A Day in Mary's Life

The Final Chapter

2011-05-31T22:02:00.001-04:00

Mary passed away Monday night at 9:15, surrounded by her family. She died peacefully in my arms.

During the last two weeks the pains in her abdomen were getting more intense and she was feeling weaker every day. On Sunday, May 22^nd her friend Barbara drove her to her daughter’s baby shower. I don’t know how she made it through the day as she was already feeling very ill. On Monday she stayed in bed almost the entire day. Early Tuesday morning she was feeling nauseous and light headed and at 5:00 I took her to the emergency room at Jeff. She was admitted right away. Tests for signs of infection were negative. It was the cancer that was taking its toll. After talking to her oncologist she decided to stop all further treatments. On Friday we moved her to the hospice of the University of Pennsylvania. A nice, new facility with 20 rooms and friendly staff. There she was kept comfortable. She was ready.

Mary gave me the best 8 years of my life. I miss her terribly.

Thierry

I’m Still Here

2011-05-17T10:50:00.002-04:00

I know some of you are concerned about me because I’ve been quiet the past couple of weeks. Well, it hasn’t been quiet from where we sit. I think in my last blog I mentioned that I had new pains in my chest – which is not really my chest but sort of the chest- abdomen area. I did call the doctor on Monday the 2nd and got an appointment immediately. This was Dr. D at Penn. They took a chest x-ray, did blood work and had me get a PT scan. We got home about 5:00 p.m. that day, having left at 10:00 in the morning.

Dr. D called me on Tuesday evening to tell me that the pain came from the liver and that the tumors were still growing. She told me I would be going off the study immediately and that she would contact Dr. A at Jefferson to talk about future treatment. It was a big decision deciding to go back to Jeff and to stick with Dr. A and not go back to Dr. M, my original oncologist. This was one of the major decisions we had to make that day, which caused me much angst. We had to think about the convenience of Jeff over Penn to receive treatments; Jeff is closer if I need to go to the emergency room, or what they offer in hospice care – to name a few. I liked the fact that Dr. A and Dr. D didn’t seem to have any problems talking to each other – there didn’t seem to be any egos or territorial issues involved.

Later in the week, while the folks at Jeff were trying to work out all the details with my new treatment plan, I received a call from Jeff saying that my platelets and white counts were low. The platelets were too low for me to get treatment. This would mean a delay in beginning the new chemo.

On Wednesday the 4th I sneezed and got a searing pain down the right side of my abdomen. The pain was debilitating and hurt especially when I took a deep breath, belched or sneezed. We had our friends take me to the emergency room at the hospital – fortunately there was only a 1.5 hour wait. They immediately plugged me into a morphine IV and came up with a list of tests: chest x-rays, ultra-sound of my gall-bladder, blood tests and cultures. They sent me home at 7:00 a.m. the next morning, unable to tell me anything. They did give me scripts for morphine. It’s amazing how quickly you become constipated on morphine. Now I have to take more stool softeners and laxatives to keep things moving.

I was told on the 13th that my platelets and white counts had gone up and that I could start the treatments this week. On Saturday evening, the 14th, I came down with the chills. When I took my temperature it read 99.9 which is high for me. We cancelled the plans we had to go out for food and drinks with friends, and I went to bed instead. When I awoke Sunday morning my temp was 100.8 – at this reading the docs would have wanted me to go to the hospital. I took two Advil and took my temperature every couple of hours. It went down and settled to about 97-something. This morning my temperature was normal.

As soon as the office opened today I called the oncologist and spoke with her assistant. I explained everything that was going on with me. She had me come in for a series of blood work, cultures and an x-ray. There will be no chemo this week either – we just have to wait for the tests results.

I think I’ve been handling things pretty well. This may be due to the anti-depressants I am now taking and the constant state of “high” I think I am in from the morphine. My support system has been here for me. During these last two weeks I was treated to a massage, been to lunch and movies with friends and family, went shopping and bought an outfit to wear to Lauren’s baby shower, which is this weekend.

Thierry was busy as well – when he was not sitting in a waiting room somewhere, he managed to plant twenty-four tomato plants,30 hot pepper plants and roughly 36 sweet pepper plants in my dad’s garden. Thierry also planted a tomato plant in a pot on our balcony and filled out the containers. The grass we had planted last year came back. (Unfortunately, Jeannine’s bulbs that she planted in the fall did not.) We picked something with a purple flower and they look great with the grass.

Hopefully I’ll find out what is going on this week and we can get a handle on it. It’s very odd to roll along with a temp of 97.6 and in a few hours have it read 100.8. Have a great even week!

A Bit Up and a Bit Down

2011-05-01T11:48:00.000-04:00

I want to thank everyone who commented on last week's blog. I realize I must have sounded like I was throwing in the towel, but I was really a bit angry at some of the things I had been hearing - and I guess about the cancer itself. All of your kind thoughts and words meant a lot to me. Many folks sent me emails because they are unable to post on the blog.

It's been a bit of a seesaw week. I have had my dark days, but have also had a couple of really good ones.

Lauren had a big crowd at her house on Easter Sunday. Lots of food and family from out of state. My dad's brother, along with his wife and son, were visting from New Hampshire, as were my sister's two sons. It was great to see everyone.

I had to have blood work done three days in a row. All for the study, but I found out that not all the blood work would be paid for by the study. So, after several phone calls and suffering a minor meltdown, I learned that because my family doctor is at Jeff, I have to go to Jeff for routine blood work and tests (like MRIs, etc.). I guess I should see all this as a minor inconvenience. Thursday was the big day. I had to be at Penn at 7:00 am for a blood draw before I took the meds. Blood was taken two more times, 4 and 8 hours after the first, so we had to hang around all day. Fortunately, Lauren was able to get away for lunch so she picked Thierry and me up and we scooted across town to an old favorite restaurant. She was in great form and her humor and spirits really picked both of us up.

Friday I met with a psychiatrist (for the second time) to talk about things. She prescribed an anti-depressent which I will begin taking today. Hopefully this will smooth out my moods. When I asked the trial nurse if this would be okay she told me that everyone is on an antidepressent and no, it wouldn't impact the study.

Friday afternoon I actually felt very upbeat and happy. I went to the movies with friends and then out to lunch. After a very big glass of wine and spending time laughing, I actually had a lot of energy. Thierry and I went out for coffee, then later friends came by and we ordered a pizza. Then Saturday came. I awoke with terrible pains in my chest/abdomen which hurt only when I move. It feels like things are growing or swelling - just what, I am not sure.

Lauren treated me to a fundraising luncheon Saturday afternoon, which we did attend. Unfortunately I was not great company. I came home and took some Advil and lay down for a while. I felt a little better and Thierry and I went out to dinner and then to a friend's joke party. What a great idea for a party, isn't it? It was really fun to sit back for a couple of hours and just listen to jokes - and laugh! I am amazed at how comfortable some people are in getting up and letting jokes roll off their tongues - and the fact that they remember them. Two couples did skits that were really funny. If you've never been to one, time to host one!

This morning I am in pain again. I took some Advil and it seemed to help for a while, but the pains are creeping back. I'll try to see the doc tomorrow.

Much to do this week, so I am hoping for a good one.

Doom and Gloom

2011-04-26T20:54:00.000-04:00

I’m doomed. I don’t say the rosary every day – don’t even go to church. I don’t believe in God, at least not the God most people attach to. I am on the fence about miracles. I am not a vegan and do not pop tons of supplements every day (they don’t go well with chemo). I am taking chemo – allowing all those evil toxins into my body. I don’t visualize enough and sometimes have trouble seeing the cancer completely disappearing and I don’t spend a lot of time self-reflecting.

It has been coming at me from all sides this past week. First there was a conversation over dinner about miracles and prayer, and how if you don’t believe, you won’t be the recipient of a miracle. The second topic which left me feeling a bit doomed was an email about a woman who appears cured of rectal cancer after a pretty grim diagnosis. She attributes the cure to self-reflection. Now, to be fair, the woman with the rectal cancer truly believes that “for her,” and I want to emphasize that she stressed that this process worked for “her,” self-reflection and visualization helped cure her cancer, which she believes sprung from her internal struggles. She also had special radiation treatments – in other words, she did it all, but she truly believes it was her self-reflection and recognition of internal struggles which had the greatest influence on her health.

So, what have I done to help myself? I actually have prayed – to whomever and to all the saints known to cure cancer. I put my trust in my doctors. I have tried to enjoy each day. I eat whatever goes down and is not a turn-off due to the chemo and makes me feel good. I have tried not to worry about the cancer itself by keeping busy and not focusing on the disease. I sporadically do some visualization and meditation (the phone rings off the hook every time I lie down to do this) and go to bed with good thoughts and envision being with my granddaughter.

I know that this information is passed along with good intentions. I am being presented with alternatives and options to help me get through this time. Intellectually I get that, and, deep down, believe in the power of creating your own reality. But, and it is a big but, when you feel tumors growing inside of you and awaken each day to a new pain in a different part of your body, these ideas also make one feel like a bit of a failure. Because a couple of dozen people in the same number of years had a serious cancer that went into remission (or was “cured”) and who happened to practice some form of alternative treatment, we are all presented with the notion that this can be us.

I don’t want to die. I never thought I would die young, although I worried at a young age about breast cancer. Did I create my cancer? Did my early fear of cancer (my aunt died of BC when I was in my 30s and another aunt was diagnosed shortly after) cause this disease to grow in my body? Is this whole thing ultimately my fault, and is the fact that I have had several different treatments with limited results due to the fact that I really have a death wish and haven’t focused on the right things.

This totally is not where I want my head to be right now.

The Trial Begins

2011-04-18T21:50:00.000-04:00

I’ve hesitated to write my blog for a couple of reasons. The first being I think I am depressed. Don’t know if this is due to the new drugs or just to the general state of my condition. The second reason is that my blood pressure will rise when I start to relive Wednesday, the day I officially began the study.

Actually, the study was sandwiched between two very nice events. Early in the day I went with two friends to the Art Museum to see an exhibit of fashions created by Roberto Capucci (http://www.philamuseum.org/exhibitions/411.html). Over eighty of his works were exhibited encompassing his entire career. His designs incorporated a wide spectrum of colors, incredible fabrics, and are more art forms than fashion. We then had lunch at the museum restaurant before heading off to Penn.

Thierry met me there, along with a research assistant who was anxiously awaiting my arrival. For some reason everyone was in a tizzy, worried that my blood work and EKG wouldn’t be completed in time for my scan. I had to throw a wrench into things by insisting that I be stuck only once – taking the blood from the access IV for the scan. I was quickly strapped into the EKG wires and someone was brought in to access my scarce veins. She was determined, and after what seemed like several minutes of digging, got the thing in.

A nurse handed me pills and paperwork and spouted off some instructions while all this was going on. By the time I got out of the little treatment room I started to become anxious – not feint – just teary.

We were then escorted to the basement where the scanning equipment is, only to find that we were scheduled to be in another building. Fortunately the buildings are connected by a series of walkways so we didn’t have to go out into the rain. The doc who was in charge of the scan was very nice. He did the injection and took his time answering my questions and explaining the procedure. We had to wait an hour after the injection before I could be scanned; the scan itself took about 30 minutes.

I was mentally exhausted when we left and went home and crashed for an hour. We later had dinner with friends which revived me a bit. Early Thursday morning I got a call from the research assistant (M) informing me that they did not perform the correct blood work and I would have to go back that day. I made it clear they would have to access my port if they wanted blood.

I checked in with the front desk and told them I was there for blood work. They said M would be up shortly to see me. She and I talked and she apologized for the mix-up with the scan – stating that I was in fact scheduled to have it done in that building. She again went over a few of the instructions and future blood work requirements, then left me in the waiting room. After sitting there for an hour, I went up to the receptionist at the desk to find out when I would be getting the tests done. She said I would have to talk to the triage nurse and pointed with her finger around the corner.

I went up to the triage nurse who for a few minutes just looked at me. Finally, after taking a phone call, she asked if I needed something. I began to explain the mix up with the tests and wondered when they might be calling me, stating that I had already been there over an hour. I didn’t tell here that everyone else around me had been called back for their various treatments. She looked up my chart and said that I was there to see M and that I saw M and that was all I was scheduled for. I explained again I was to have blood work done – she proceeded to repeat her statement. I told her she was going to have to call M and get it straightened out. She told me that they were very busy, she had 8 people ahead of me and that I could be there for over an hour. I told her that all I needed was to have blood drawn – which takes minutes – and that she should speak with M and let me know how long I would have to wait – since I wasn’t supposed to be there anyway. She suggested I go to the regular lab – I told her no, they were to access my port – which only a nurse can do. Needless to say, neither one of us were very happy. I was called about 15 minutes later.

What amazes me is; here I am, at a world renowned medical facility, in a medical trial, and the place appears so disorganized. I have such an unsettled feeling about all of this. I miss the girls in the oncology unit at Jeff, and I feel pretty much out there – alone.

The pills seem to be going down alright. Other than feeling a little tired and having minor flue-like symptoms later in the afternoon, I am okay. I do feel a bit depressed, and continue to have some intestinal discomfort (resulting from the tumors). I plan on doing something about the depression, and will try to remain focused. I feel bad for Thierry, though. When I get like this I don’t feel like talking – to anyone. I could just curl up in bed with some mind pabulum on the TV.

The week ended on a good note. Friday Thierry and I went out for dinner and had a delicious paella. We then went to the Kimmel Center to see the Orchestra National de France. Two of my favorite pieces were played, Debussy’s “La Mer” and Stravinsky’s “Rite of Spring”. This performance was part of the Philadelphia International Festival of the Arts – the theme of which is France. The Kimmel Center erected a replica of the Eiffel Tower covered in lights. As we were leaving the concert, we were entertained by a light and music show. It was much fun. I felt good and we had a really nice time.

Sunday we baked pastiche at my mother’s house; quite a production. Pastiche is a pastry that looks like a baked ravioli. We made the dough and ran it through a pasta machine. The dough is filled with a cheese filling and baked. It took us (Jean, Ann, Joan, Lauren and I) a few hours to make about 8 dozen pastiche. One person managed the dough, one person turned the wheel on the pasta machine, another stuffed and cut the pastries, another pinched the dough and another coated the pastiche with egg and manned the ovens. My sister tried to find out the history of this pastry and came up with a blank. It appears this is a Taraborelli original.

Now to get ready for Easter. Lauren and Mike will once again host both families – about 35 in all; something to look forward to.

PS: My friends have been wonderful and have been checking in on me and occupying my time. I don't mean to sound like all I do is sit and brood - there is just only so much one can write about, but I am every so greatful for those folks in my life.

Anxiously Waiting

2011-04-12T10:13:00.001-04:00

This week I start the trial. Wednesday I go for blood work and scans and begin the pills on Thursday. I am most anxious.

I am extremely uncomfortable. My side hurts, my back hurts; nothing that I need to be snowed for (morphine) at this point - just uncomfortable. Luckily the weather has been nice and we have been able to get out for a bit.

We went to a concert on Sunday that featured the Pennsylvania Ballet (a first time event - pairing the ballet with the orchestra). This performance was part of the Philadelphia Festival of the Arts celebration currently taking place at venues all over the city. The festival encompasses live performances (ballet, theater), art exhibits and cinema. This is an event that should be recognized (inter)nationally for the level and diversity of programs that are offered.

I managed to take a couple of walks, and even took my weights out of the closet (2 and 5 lbs. only). The weight work did make me feel a bit better; I'll try again today.

That's all for anow. Going to put the invitations together for the "baby shower". Will try to write more over the weekend.

A Mixed Bag

2011-04-05T22:13:00.001-04:00

A mixed bag, is what Dr. A from Jefferson Hospital said. My recent scans showed improvement in some tumors, but not so in the liver. She took the liberty of calling Dr. D. at Penn and they both thought that the Phase II trial study was the place for me to be.

I could have guessed the outcome of the scans. The pressure under my right ribcage has increased considerably. Sometimes it even hurts in that general area. I also feel pressure in other places, and often have a backache, albeit on the other side.

I had the scans on Tuesday, but had to cancel my regular appointment with the oncologist on Thursday because I came down with a horrific cold. After several unsuccessful attempts to reach Dr. A. by phone, on Friday morning I called Dr. D. at Penn to get an appointment. I had left the house for about an hour when Thierry got the call from Dr. A. with the news about the scans and her call to Dr. D, so all in all the timing worked out okay. I saw Dr. D. on Monday, yesterday, and I will begin the trial as soon as they can schedule a special scan for me (and assuming the blood work they ran yesterday comes out okay), very possibly next week.

It seems I have lots of the protein that my tumor needs to grow. The hope is that this experimental drug will stop tumor growth. It is a CDK inhibitor that affects this particular protein. It appears that in some cases there has been tumor regression. And that is my wish; that not only does it stop growing, but that this thing (or things) in my liver actually get smaller so I am more comfortable.

I will be taking two pills a day for three weeks, have a week off, then start the pills again for another three weeks. This 3-weeks on, one-week off is a cycle. I get blood work done and see the doctor at the beginning of each new cycle. This is very similar to prior treatments. What is different is that I will now get scans every 8 weeks (MRI/CT/PT), and they will add a new type of CT scan, called “FLT”. The only difference between the two scans I can remember is that the typical CT requires an injection of sugar which goes directly to the tumors. The FLT does not use this type of injection. I only hope I have enough slivers of veins left for all of these scans. Another difference in the schedule is an extra day of blood work that requires my going in for a blood test on the 15^th day of my treatment cycle early in the morning before I take the meds; then I take the meds and four hours later return to the hospital for another blood draw. Thankfully they will use my port for all this blood work – I would have it no other way!

Needless to say I have been a bit in the dumps. Been thinking about “the end” and how I will know when it is coming and what we need to do to prepare for it. I know everyone says to stay positive and focus on the new treatment – and I am sure I will when I get out of this funk. But the day will come…….

So, another (newer than) new treatment; another new normal to get used to, and hopefully another few months of a reasonably comfortable life. I’ll keep taking deep breaths and try to keep the engine fired up, because, as the words on one of the nurse’s pin said: “Cancer Sucks” and there ain’t a whole lot I can do about it.

Keeping in Touch

2011-03-21T23:07:00.001-04:00

I’m sitting in front of the TV watching the Food Network waiting for a program to come on that will feature one of our favorite local restaurants. I am thankful that I haven’t become addicted to this channel, because I became so hungry while watching one of the programs that I grabbed the chips and some cheddar cheese and chowed down (and this is after dinner and an hour before bed)!

The channel I am addicted to is HGTV – the home and garden network. I love to watch the show where they stage houses for sale and the international home searchers show. In this program they go into countries all over the world and look at houses that range from “they should be torn down” to “unaffordable for the common man”.

A few weeks ago we met friends of ours at a favorite BYOB in a cute town in the suburbs. My girlfriend is living with metastatic breast cancer which is being controlled by herceptin. Unfortunately she has had a few medical problems stemming from her treatments. Most recently she suffered a broken vertebra which is causing her much pain, prevents her from driving and she needs the support of a walker.

It is difficult to see such a high-spirited, fun-loving person have to deal with all of this “suff” but she does so with a sense of humor and continues to keep herself as active as possible. She always had a lot of friends, and I was fortunate to be included in a celebration of those friendships during a party she threw a few years ago. She had a very tight circle of women friends that she had known for a long time and had frequently traveled with to many fun places.

During our conversation she mentioned that she hadn’t seen or heard from some of her friends as much as she used to (something to that effect). Her body language and facial expression caused me to think that she was saddened by that. I wonder how often that happens to folks who become ill or eventually become less mobile or somewhat incapacitated by their illness.

I know it is extremely difficult to speak with someone who has a potentially terminal illness. What do you talk about? What questions do you ask? What topics are off limits? Maybe for some it’s just a matter of not being able to deal with watching a friend suffer or go through the physical changes that often come along with a difficult disease.

I have come to appreciate how important and therapeutic it is to maintain connections, friendships and social activities while going through this process. There is a part of me that believes as long as I keep moving, I will keep living. Now, probably more than ever, my friend could use her friends to keep her moving forward. Even though she is on major pain killers, she is aware of those around her, maintains conversation, remembers your family and hobbies, and puts you at ease by asking questions and showing her interest. She doesn’t focus on her illness and seems genuinely glad to hear what others have to say.

The point of all this is that we shouldn’t just assume that because someone is very sick or in pain that they don’t want company – or that if we go to see them, we will automatically walk away saddened and depressed. I suppose that at some point, if I am really ill, I won’t want company. Until then, I hope you all keep in touch. That reminds me - I have a call to make tomorrow!

Up, Down and All Around

2011-03-13T17:35:00.000-04:00

Well, I passed the test. I mean, I tested positive for the protein that makes me eligible for the CDK inhibitor study at Penn.

I had received a call on Monday from one of the nurses informing me that I tested positive. Then I heard from the doctor (Dr. D) Thursday morning – the day of my regular chemo treatment. She reiterated that I was eligible and we discussed my options.

Usually oncologists like you to go through three cycles of a treatment plan, then have scans done to see the results. That day I was to begin my third cycle of Halaven. Dr. D said I could either continue with the Halaven or enter the program. I asked her what she would advise had I been one of her patients. She said if a chemo regime is working, then it is best to stay with it until it stops (working) – which eventually it will.

I asked if she would talk to my oncologist (Dr. A), which she did that morning. It was decided that I would continue with the next two doses of Halaven, then have scans to see how things are. If the drug is not working, I will enter the study. As it goes, I would have to wait 28 days after my last treatment before I could begin the study drug. When I have the scans it will be about 12 days after my last treatment. I was concerned about what would happen if the Halaven is working now, but stops in the next 3-6 months. Both doctors feel I should still be able to make it into a study within that time frame.

I can’t tell you how anxious I was when I received the call from Dr. D. My thoughts ran everywhere from should I switch to what if I switch and it doesn’t work; what if I have an allergic reaction; what if it doesn’t work; what if it works – for how long would it work. And then of course, all the other questions: who else is on it; how many breast cancer victims; how well has it been working; how does it work, exactly… etc. The level of anxiety was staggering.

As fearful as I was to stop what I know and go to something so new, I was (I think) a bit disappointed to learn that I will have to wait. New questions came into my mind like: could this really eliminate or put the cancer into a longer term of remission; will I, in fact, still be eligible for this treatment at a later date; am I staying with a drug that still has side effects (like neuropathy, hair loss, digestion problems, watery eyes) when I could be taking a drug that is just as good with no side effects?

Trying to contain all of these thoughts and emotions can be daunting, and sometimes leaves me short-tempered and irritable – but Thierry tolerates it all pretty well. Now to wait….. time seems to stand still while I wait for the next scans. A lot to be afraid of, a lot of questions unanswered.

On a lighter note, Dad seems to be using the medical alert system, at night anyway. Mom comes home on Wednesday. She has done very well at rehab. The weather is warmer, and Jeannine's bulbs are starting to sprout in our planter!

It's A.....

2011-03-06T16:35:00.010-05:00

It’s been an amazing week. We got mom tucked in at rehab on Tuesday. They started her in therapy right away - even keeping up on the weekends, and she has been pretty good…. That is until she got a roommate who she decided she didn’t like. All in all she is doing well.

Barbara arrived Wednesday night. It is amazing how even when you haven't seen someone for a long time, you pick right up like you were together just the day before. We met Lauren and Michael for lunch on Thursday, then went on to the clinic where she was to have her 20-week ultra sound. When I was pregnant, they didn’t give you ultra sounds – I don’t even know if they had them then.

The amount of detail they show is incredible: the brain, the heart – beating, the spinal column. When the doctor was exploring the baby’s heart he put on the sound – incredible. He also showed us a 4-D image – amazing the detail that you can see! Then he did a search of the genitalia. A friend of mine gave me an idea of where to look on the image to determine if it was a boy. It’s very difficult when you don’t have a clue what you are looking at. Finally he said, “see those three lines, that is the labia…. It’s a girl!

My first comment was: “are you sure”? My second exclamation was: “your aunt Jean said it was a girl”. One night at dinner she took her necklace off and held it over Lauren’s belly. At first it swung from side to side (indicating a boy), but then it moved in a circle. She tried a second time and that time it went right into a circular motion – indicating a girl. When this came out of my mouth, the doctor replied: “so why do you need me?”

We are thrilled. All the Taraborelli women are anyway – except maybe mom – she thinks we already have a lot of girls in the family, notwithstanding the fact that she has three grandsons and two granddaughters. Men dominate Michael’s side of the family. There are only two granddaughters out of eight grandchildren.

Lauren and Mike have chosen the name, Mary Jane, after the baby’s two grandmothers. Now to get through the next 4.5 months! I am a nervous wreck – about everything. Everything from how healthy I’ll be, about Lauren’s health, and of course, about the baby. I am trying hard not to dwell on anything and to stay positive. One day at a time, one day at a time, one day at…….

The week didn’t end there. When we left the kids Barbara and I picked up medical alert systems for our parents. We went over to my parent’s house to set up theirs. Set up was easy and we tested the system. Dad stood by and pressed each alert button and listened each time the service called in to verify that the signal was received. I must say he looked skeptical and resistant. My sister does not think he is wearing the alert. I can only hope he gives this some serious thought at night, especially while he is alone.

On Friday we (Barbara, Thierry, Lauren and I) had lunch, then went to the Barnes Museum where Michael joined us for a tour. Later that evening, Barbara, Thierry and I enjoyed first Friday and toured a few of our favorite galleries. We ended the evening at a local cheese shop which was just bought by our friends, Lisa and Kirk. The shop opened shortly after Thierry and I moved to Philadelphia about four years ago. Gradually, the amount of cheese dwindled and the shop survived by selling sandwiches and light suppers. We were thrilled to walk in and see a case full of a wide variety of reasonably priced cheeses. It will be great to have this type of shop in the neighborhood.

Barbara left early on Saturday morning and I headed up to the Reading Terminal market to meet Judy and Margaret for breakfast before the Flower Show. Again, it is amazing how you just pick up where you left off with old friends. Lauren joined us and we strolled the market and did some shopping where Lauren treated me to a fun pair of earrings. We then went to the Flower Show whose theme this year was Paris. We walked into the exhibition area to a 60’ high replica of the Eiffel Tower.

I really don’t know if there is another flower show in this country that compares to this one. It draws attendees from US and abroad and exhibitors from 26 states. We always enjoy the exhibits, especially the miniatures and the jewelry and purses made completely from plant material.

Saturday night the family gathered at mom's rehab facility to reveal the baby’s sex to the whole family. Sandwiches, salads and cupcakes were served along with a little bubbly (and of course, a flask of Manhattans). We had a grand time.

Today, Sunday, I am taking a break. I’ve had a bit of a sore throat for a few days now and am feeling a bit tired. It is a rainy day, so a perfect one to veg in front of the TV. Looking forward to a much quieter week ahead, and still enjoying the high from the last.

Note: The family pictures taken at the party are by Juan.

A Whirlwind of a Week

2011-02-28T09:25:00.003-05:00

It has been a very busy week. We had a great time in the Adirondacks. It snowed twice and I think the lowest temperature Michael clocked was 8◦F. This was Michael’s first visit to upstate NY, Thierry’s second (but first during winter). We toured Paradox Lake where Lauren and I vacationed for many years, and walked on Schroon Lake which was frozen solid. It was very cold and blustery that day and when the wind whipped across the lake it felt like the temperature was around -10◦F. Needless to say we didn’t hang outside too long.

On Sunday the sun was bright and the wind was down. We went to the Lake Placid area and visited the remains of the Olympic village. Michael took a bobsled ride and then we went onto the ski jump area. To get to the top we had to take a chair lift. I am not really afraid of heights until you put me into a lift or tram that runs on a pulley! I managed to keep my breakfast down, and we enjoyed the view of the high peaks region.

We stayed at the Friend’s Lake Inn, one of my favorite places for many years. We had a fireplace in our room which Thierry dutifully kept lit. Our room was pretty large with great seating so Lauren and Michael spent a lot of time with us before and after dinner, reading and playing cards. I was very sad when we had to leave; I so enjoyed spending time with Lauren (and Thierry and Michael).

On Wednesday I got a call from Dad who told me he was calling 911. He said Mom was very dizzy and light-headed and felt faint. In actuality, it was time for what has become Mom’s semi-annual hospital visit. They kept her overnight and we learned the next day that she had a stroke. Fortunately it is a relatively mild one that took place at the bottom of the cerebellum. Other than dizziness and a feeling of being off-balance, she has no other side effects. She will need a couple of weeks in rehab, then we hope to have her back home.It’s funny, just two weeks ago I talked to my parents about getting a medical alert system in their home. Mom looked at me and said, “I don’t think we need that yet.” Dad just growled! I told them both the other day that they are getting one – and they WILL wear the damn things! Thank goodness my Dad was there with my mother when this happened. Had he been out, my mother never would have been able to get to the phone.

We had a great weekend, which included dinner with friends on Friday. I even managed to stay out until 11:00 (a big wow)! Yesterday I vegged, and watched 13 episodes of Nurse Jackie. Today TD and I heard a wonderful concert of French Baroque salon music at a local church. Afterward we had a drink at a bar we used to drink at after work during the “good old days”. We used to drink there until one of our gang got tossed (I won’t mention names). I think TD felt very old, especially when he noticed that the bar tenders probably weren’t even born when we were there last.

I heard from Penn the other day. They do have my tissue samples after all. I had called Jefferson twice who said they had no record of receiving a request. When I finally got through to the right person at Penn they said they had made the request to Jeff on the 8^th of February (the day after my appointment at Penn) and still had not received them. A day later they appeared. I have no idea how they suddenly fell into someone’s lap, but they are there. It will be about four weeks before I hear any results. Now I have to keep myself from getting my hopes up. Focus, focus, focus.

The week coming up is going to be another busy and exciting one. Mom will go off to rehab. My dear friend Barbara arrives on Wednesday from San Francisco. We go to Lauren’s doctor appointment on Thursday when I will get to see the ultra-sound. Friday we all go to the Barnes museum. Saturday is the Flower Show preview day when I’ll get to see other dear old friends, Judy and Margaret (Judy treats Lauren and me to the Flower Show). Saturday we find out what the sex of the baby is – we hope! So, don’t be surprised if I am late in posting, again!

Challenging Technologies

2011-02-17T17:57:00.002-05:00

I am technologically frustrated today: A two-plus hour wait for my blood work at the infusion center; I can’t take photos with my cell phone (was going to post a picture of Thierry); and now I can’t get onto the Internet with my Netbook! Guess I rely too much on all this technology. It is hard for me to imagine me or Thierry in our 80’s complaining about not being able to keep up with technology, like the generation before us. Maybe I am unjust in making that last statement. My Aunt who is in her mid-80s is on Facebook and uses email. The only thing that keeps my dad from using his computer is his eyesight.

But technology is our future, and biotechnology maybe my future. I met with a doctor at Penn to get a second opinion on my treatment. She was wonderful and spoke to me in a very positive, clear and concise manner. While she did say that I have been receiving the same types of treatment they would have prescribed, she also mentioned a phase II clinical trial they are conducting at her hospital. They are testing a cyclin dependent kinase (CDK) inhibitor, which interrupts cancer cell growth. This is an oral agent that is well-tolerated with no side effects. In order to qualify for the trial, a certain protein must be present in one’s tumor. I signed a form authorizing them to get samples of my tumor. I guess my chances are the same as winning the lottery…. I am trying not to get my hopes up.

When I say things like that, everyone says I am being negative. Folks don’t understand that I can’t put my eggs in that basket, because you can only handle so many let downs. I’d rather focus on what I am doing today, which is receiving my second cycle (two weeks in a row of treatment, one week off) of Halaven. This new chemo regime really has been so much more tolerable than the last. I was a bit nauseous with the first treatment, not at all with the second. I was wondering if the massage I had the day after my second treatment may have had an impact on how I felt. I really felt so much better all around after the second treatment that I asked the doctor for a prescription for massages – which also makes it tax deductible. The massages also provide some relief to my headaches and shoulder pain… can you tell I feel guilty; like this is a luxury!

But today, cancer research is all about breaking down cell make-up and targeting treatments to the individual type of cancer. Triple negative cancer is a tricky one and has many variables. No triple negative cancer is alike, so they tell me. Often I have wondered if there is a researcher out there who would be willing to take a sample of my tumor cells and work on them in his/her lab to determine what makes it grow.

Last week was my week off of treatment, and this week I felt almost normal. Now, let’s ask all the powers that be that it has a positive effect on the tumors (or should I say negative effect on the tumors).

We leave tonight for Lauren and Mike’s, then tomorrow for upstate NY. Just in time too, because the temperatures in Philly are going up into the 60s – way too warm for this time of year. I hear we may get snow in the Adirondacks.

We have much to look forward to.

PS: I ran into a neighbor who works as a Physicians Assistant in the oncology center. I was lamenting the long wait for my test results and she reminded me it used to take two weeks for the same tests!!

Denial

2011-02-03T21:10:00.001-05:00

I realize that my last blog was probably a bit of a downer, but that is the reality of living with cancer. You have down times and up times. If I only wrote about the good times, it would negate the impact of the disease on my life. It’s not all roses. It is not easy to tell yourself every day “live in the moment, enjoy each minutes, it is what it is!” It basically sucks and you make the best of it – recognizing that some days you just have to bitch, and that is okay.

Today I began to think I am in denial. You are probably thinking, no way. Yes, I know what this disease is about and I know the outcomes. When I feel good I really believe I can live a long(er) time. When I feel bad… well you already know about that. But it hit me today that I can deal with things in this capacity; however, when someone else infers I am doomed it really upsets me. This is what happened to set me (off) thinking.

I went in for my treatment, which went pretty much okay. We were there three hours, but the time went pretty fast. We chatted with my nurse and one of the other nurses and had some interesting conversations. The evil Physician’s Assistant (EPA) appeared on the infusion floor and stopped by to say hi and wreak her usually havoc on my day. She mentioned she speaks regularly with Dr. A, the new oncologist, and gets updates on my treatment. She said she knew I was on a new drug (didn’t ask me how it was going) and then I heard her say something like “well you know, this is the THIRD treatment plan you are on and we have to be creative. We are going through the available drugs… (while she was nodding her head from left to right with her right eyebrow lifted in a “you know what that means” sneer).

This occurred as I was enjoying a cup of Starbucks coffee which I haven’t had in a while (been teetotalling due to mouth and intestinal problems which have resolved since on new drugs) and munching on a fattening piece of iced-pound cake. I immediately felt like I was going to vomit. I promptly told EPA that it was nice talking with her and brought the conversation to a close. Although I have gotten over it, her comment bothered me for several hours. When my oncologist gets back, I am going to have to tell her I don’t want to see the EPA anymore. It has always been my philosophy to remove negative influences from ones environment – this is a major one.

So, does this mean I am in denial? Somewhat (and maybe that is a good thing??). I think what it means is I am not ready for anyone to say we can’t help you anymore. And I hope the one that gives me that news has the right amount of empathy and ability to follow it up with a how to plan.

We were fortunate to be given two gifts of bulbs over the holidays in little growing pots. One I failed to take a picture of. This photo is, alas, of the remaining one. They both provided many days of brightness during this gloomy winter. This acorn basket was given to us by Judy S, who also helped us with the planters. Soon we hope to see the bulbs burst that Jeannine planted in the planters when she was here in December.

PS: TD thinks I am being a little unjust in my description of the discussion with the EPA. Note, I said this is "what I heard". She has a tendancy to make comments like she is thinking outloud, with no real thought to how they sound or how they will be taken. Obviously, I take almost everything she says the wrong way!

Changing Up

2011-02-01T21:56:00.004-05:00

It's Tuesday night and I have finally had enough to drink to put me in the mood to write. I guess that is an awful thing to say, "had enough to drink". Especially for a person who has tumors growing in their liver. But, so be it. Actually, I haven't felt really well enough in the last week to drink, so I guess this is a good thing?

I have been somewhat depressed - maybe because I feel the suckers pushing up against my rib cage, or maybe because I feel a bit more nauseus with this chemo - or maybe just because the weather is so f..ing miserable - or maybe a combination of all of the above. It is hard to stay positive when you feel shitty. All you think about is: "is this what dying feels like?"

Wow, I really don't like to write when I feel negative; but, oh well, this is how I feel, so I will share. You, my dear readers, may feel obliged to ignore this posting; and, that is ok!

The treatment went okay. Thierry and I thought we would be in and out of the infusion center quickly since the chemo is delivered in a syringe. Well, we were mistaken. We spent about five hours at the center between visiting with the doctor, blood tests and drug delivery. Hopefully this Thursday will be a breeze: no doctor, no zometa (the bone drug). By a breeze I mean two hours. We'll see.

The drug doesn't seem to drag me out as much as the other regime. Today I actually went to the gym and felt like I was pumping more than other days. I did take a nap this afternoon, but feel good now (at 9:30 pm). I do have to say, tho, that my stomach doesn't always feel so good - and yet again, my tastes have changed - meaning that I have to again find new foods that I feel like eating. Can you imagine what it feels like to have to cook or prepare a meal when you have a) no appetite or b) can't think of anything you "desire" eating?! For one who has always loved to eat, this is a travisty - and a major chore.

Well, let's talk about good things that happened this week. We finally got our FIOS installed. For those of you who don't know FIOS, this is an internet/cable/phone service provider. It is such a big deal because after finally deciding to consolidate all of our services, it took us several phone calls and internet sign-up attempts to get the order placed. Then, after we got it placed, the order was somehow cancelled by the provider - go figure. You would think that they wanted the busines so much they would jump on this opportunity for a customer.

The one thing about Verizon that amazes me is when you ask them a question the first response is always, "we can't do that." In this instance it pertained to my phone number which I have had for many years. I had to switch to Vonage to keep the number when I moved in 2004 which Verizon couldn't transfer from one part of town to the other (the same town mind you). In this age, where you are suppposed to be able to take your number with you, they still refused to give me the same number. Thierry handled the transaction (I didn't try to fight or get involved) - during which he was told "the number is not available." Of course not, I had it!!! Anyway, they assigned us a new number when we placed our order. So, being concerned about connectivity, I started to distribute the new number. But, when Verizon cancelled the order and we rescheduled, they gave us yet a new number. After almost an hour on the phone and 4 reps into the process, I was able to keep the number originally assigned and disseminated. Amazing, that a supposedly technologically advanced company like Verizon is so inept at processing such a simple request. To boot, they get indignant when you complain. The installation actually went okay and they even called the next day to see if everything was ok.

Two very nice things that happened this week: Lauren asked me to be at her March doctor's visit to see the ultrasound. I can't wait! And, my oldest and dearest friend, Barbara, is coming to visit from San Fran - at the same time as the doctor's visit. Barbara is Lauren's godmother - so it should be a joyous time:)

I have an appointment with a doctor at the Hospital at the University of PA on Monday to get an opinion on my treatment and to see what, if anything, is out there that I don't know about.

I am reading Franzen's book, FREEDOM, which I am struggling with. I have yet to find an Oprah pick that I like. Don't know why I thought this would be different. And for those of you who give a hoot, I love my Kindle. I know there are a lot of people who believe in paper - and I do believe they have their benefits and place, but the Kindle is really a convenient little gadget.

Here's hoping for an early Spring!

Another Day, Another Treatment Plan

2011-01-23T12:56:00.000-05:00

Today is Sunday, sunny but very cold; temperatures going down to the single digits tonight. This morning Thierry said he was sick of winter. I reminded him that it is one-third over. So for those of you who are suffering the winter blahs, keep that thought in mind.

I received a call on Friday that my new treatment has been approved by the health insurance provider. I will be getting a brand new, just on the market a few months, drug called Halaven. It is so new that none of the nurses I have spoken with at the infusion center have administered it, and they don’t have a supply at the hospital pharmacy. They do expect to have it by Thursday so I can begin treatment. Also because of its newness, no one knows what the side effects really are. In looking on line, it appears they fall in line with the rest; hair loss, fatigue, nausea.

The treatments will be administered two weeks on, two week off. Apparently it is an injection given intravenously (as opposed to a slow drip). This is a good thing as it means my time at the infusion center will be greatly reduced. Then it will be about settling in to the new normal.

I have to say the response from my new doctor has been terrific. She did explore trials to see if I could get into a Parp study. Unfortunately, the only study combines a Parp with carboplatin – which I developed an allergy to. Although they say some people can be desensitized to the drug, they refused to include me in the study. I have decided it is time to get a second opinion, and have selected a doctor at Penn to contact. We’ll see where it goes.

This is the first time I have not read my test results. I really don’t want to know what they say. I remember when Mike’s mother was going through treatment for lung cancer. There were a lot of questions I don’t think she asked. I thought then that I would want to know everything. And, up until know, I stayed on top of everything. I am not exactly sure what changed. I guess it’s about knowing what the outcomes ultimately are, and trying to maintain hope that we will beat the odds. I can’t focus on living, if I am focused on dying.

So, I’ll focus on exploring options for living – and trying to live each day the best that I can.

The New Normal

2011-01-17T10:27:00.000-05:00

Sounds like a subject philosophers could debate for a long time. What is normal?

When we were in New York recently my son-in-law asked me how I felt. I said fine, I guess; but what I really want to feel is normal again. By that I meant how I used to feel before chemo.

Before chemo I could wake up in the morning and jump out of bed, get my shower, start breakfast, make the bed and begin my day without hesitation or pause. I could eat whatever I wanted without a care (other than worrying about fat content or calories or sugar). I could get up early and go to a meeting, walk to and from appointments and shopping trips, pick up last minute and go do whatever – dinner, movie, a concert, even stay up until midnight, one o’clock. Doing all this and feeling - well, good. We didn’t hesitate to plan trips and go when we got the urge.

During my first course of treatment, I had to be at the infusion center every week for three weeks, then had one week off, so things had to be planned around this – very doable. Other than one day of minor nausea and tiredness, the chemo didn’t debilitate me that much. I could even walk to and from the infusion center in all weather. We did take a trip or two when I could arrange it around a break in treatment – and twice actually took a week off of treatment. There was some neuropathy which was not debilitating, and for the most part, things hummed along.

Then I started the new chemo regiment which meant going to the infusion center once every three week, but taking chemo pills for 14 days, leaving one week to “recover” before the next trouncing. This chemo inhibited my ability to walk as much as I used to including using the treadmill at the gym. I was constantly tired, so tired that just the thought of going to the gym seemed like a major hurdle. It takes me many minutes to actually get out of bed and over an hour to get dressed. I rarely utter a word to Thierry for the first hour or so after I get up. Often I have to sit to deal with the regular morning headaches that sear through the right side of my head and neck.

My diet changed dramatically because my mouth became so sensitive, including the onset of mouth sores which I never had to deal with before. I am usually in bed by 10:00 and rarely get up before 7:30. I don’t like to make plans in advance anymore because I am not sure how I will feel – although we do have reservations for a stay in upstate NY in February (I am so determined to go). I still managed to work but timed meetings carefully to ensure I’d be physically able to make the meeting.

So as I began to accept this new normal and adapt, I learned last week that the chemo is not working. My substitute oncologist (who I like) is looking for an alternative chemo to start either this week or next.

I guess what I am learning from all of this is that feeling normal is relative… It’s just how you adapt to how you feel and decide that you can still live and enjoy life, within its limitations. But I still miss those nights of drinking and laughing until 1:00 in the morning!

Somtimes a Simple Thank You is all it Takes!

2011-01-09T14:04:00.002-05:00

Since it is the new year, I thought I’d write about something that everyone could add to their resolution list. That is, to say Thank You.
Something so simple, yet it seems that today certain courtesies are expected and don’t warrant acknowledgment. Or perhaps people are so preoccupied with getting somewhere or acting busy, that saying thank you is the last thing that comes to mind.

Times when people fail to say thank you include:

when you hold a door for another person – although there are many people who are oblivious that there is someone behind them and they let the door slam on you, or again are in such a rush that they just let the door fly wide.
when you step out of the way – or make way – for a person to get through a small area; particularly for a person pushing a stroller or for a person in one of those automatic wheel chairs. Seems that both of these groups believe it is their right to make headway since they are in some way attached to a wheelie thing.
when a waiter brings you something you asked for – or not. Seems many people feel that it is a server’s responsibility to take care of them while drinking or dining out and that the tip is thanks enough. I find if you recognize their routine efforts, waiters tend to be much more attentive and pleasant.
when you ask someone to bring you something – like your husband, daughter, sister, etc. Maybe being close to a person causes us to feel the thank you is assumed. It seems that older people especially feel it is their right to ask others to get them things and the thank you isn’t really considered.
when someone stops to let you pull out into traffic from say a garage or parking space, or lets you merge into traffic. I remember when I was little I wanted to be the one to wave and thank the other driver. Where did that go? It is even rare these days that people are so willing to let you in, even in a tight merging situation that often you don’t get the opportunity to say thank you. I like to do the wave – probably because I truly am appreciative when someone lets me in because it is so rare.

There are many other incidents and stories I am sure you are thinking of and can share relative to this topic. The last bullet was actually what caused me to write about it. People behind the wheel tend to be very unfriendly, preoccupied – especially when on the phone, and always in a rush. Maybe if we all slow down a bit and be more present, we’ll remember to say Thank You!

But there are times when saying thank you can seem trite; like when someone rubs your feet or leaves little packages of goodies at your door or secretly sends a book to your Kindle. How do you show your appreciation for those who go that extra length to make your life a little better. I’m working on that one.

The tree is down, the weather is cold and more snow is expected during the week. My goal is to get myself out of the house no matter how rotten it is. It’s been a busy but good week.

Bringing in the New Year

2011-01-03T16:42:00.001-05:00

Annual Photo
(All part of the Spain Trip contingent except Mom)

Happy New Year! It is already the 2nd and the year has started off on a good note – I feel good today! Even went to the gym.

I won’t write about making resolutions, I did that last year. The only observation I will make is that over the last two days I have seen in the paper and heard on NPR news people making resolutions for others. Editors and so called experts making resolutions for everyone from Angelina Jolie to Ben Bernanke. WHO CARES!

We have had a wonderful holiday. I dreaded the thought of getting chemo on the Thursday before Christmas. I would have asked my doctor if I could skip the treatment, but I didn’t get to see her. She was in a bad car accident and will be out of commission for a good while (dread!). I did manage to get an appointment for this month with a young oncologist I heard speak at one of the conferences I went to and am quite happy about that.

During my treatment we had a few visitors. Lisa R came for a bit, then Lisa M and Barbara H came and we played scrabble and snacked on Barbara’s wonderful cookies. Lisa wanted to give me a foot massage. Reluctantly I agreed. I admit I felt awkward; first in having a friend spend her time pampering me and second, because my feet are so awful from the chemo. What a wonderful treat that was! These visits give Thierry a break and help the eight hour treatment day go by quickly. I left in a great mood which lasted for several days. I was surprised at how good I felt the days following – better than I had after all the three previous treatments.

We celebrated Christmas Eve at home, having a spaghetti and clams dinner with Barbara and Barry. Kirk and Lisa joined us for drinks and Lauren and Mike came over to spend this night. On Christmas Day everyone rallied around and we had a great time and lots of food. I made another venison stew, Ann brought shrimp, Koniko made her incredible sushi, Jean made sautéed mushrooms with garlic and hot peppers, Joan brought snacks, Lisa made the salad, Lauren brought the Yule log! Joan also brought a game which kept us entertained for a bit and the conversation flowed. Lauren and Mike stayed over again Christmas night – another wonderful treat. Lauren and I fell asleep on the sofa watching the Wizard of Oz. Mike gave Thierry and I our most prized gifts of the season: a radio controlled helicopter for Thierry and a foot massager for me! We have used them every day since.

The first snow of the season fell on Sunday, close to a foot. We got a call that afternoon from Barbara, who suggested we all meet up at a bar for drinks then head to Lisa M’s for dinner. Normally I would have bowed out, but decided I wasn’t going to miss the fun of a first snow again (last year I hunkered down while Thierry went out). I was very glad I did, and managed to last for quite a while – although I was in bed by 10:00.

I had two days of meetings during the week and am thrilled to be working with an old chum that I haven’t seen in a couple of years. The project, if it goes off, should be a fun one, and working with Marian will be a wonderful experience.

We had dinner twice with my sister and her friend Teresa from Spain, who spent several hours over the week working on my feet.

Thursday was the family wine tasting. My brother and his wife came for the first time, which made it even more of a special event. The wines were from different regions in Italy, a sparkling, two whites and three reds. The food gets more creative and plentiful every year. Another great party and everyone seemed to be pretty sober when they left.

Friday morning I had a meltdown. Maybe it was all the activity that occurred during the week; maybe it was too much booze, perhaps the chemo. On top of that it was our second wedding anniversary so the guilt of being short-tempered and cranky only made me teary and more frustrated. Thierry and I went for a walk and picked up a scrumptious pound cake made by a friend of ours. It was good to get out in the fresh air and relatively warm weather. When we got back, I took a long nap. Feeling much better when I got up, we went out to dinner at a local restaurant to celebrate. I slept more when we returned, waking in time to prep a few things for New Year’s Eve. A few friends stopped by to join us in bringing in the New Year and watching the fireworks from our condo.

On New Year’s Day Thierry went to the Mummers parade while I went to join in a farewell lunch for Teresa who was returning that day to the Canaries. We will miss her terribly. Lisa M (what an angel) wanted to do my feet again, so she and Barbara came over and we played scrabble, which Barbara won, and I got a great massage. I awoke today feeling incredibly good and, as I mentioned, went to the gym for the 2nd time in about two months! I think the foot massage has more therapeutic powers than I realized.

If the year continues the way it started – it is going to be an outstanding one!

Merry Christmas

2010-12-25T12:38:00.001-05:00

Merry Christmas!

I wish all of you a day filled with friends, family, fun, too much food, lots of booze and much love!

Holiday Cheer

2010-12-19T15:22:00.004-05:00

I was all prepared to sit down and use this entry as a bitch session, but last night I went to bed feeling pretty good and spent some time reflecting on the week.

Sunday we (almost the whole clan) had dinner at Lauren & Mike’s house so we could see their incredible tree and Christmas decorations. She made wonderful turkey meatloaves and Jean brought a cake to celebrate Thierry’s birthday, albeit a bit early. We all had a great time.

Monday I worked a bit and had a wonderful massage. Not feeling well over the past month and being cold all the time, I found myself constantly in a crunched up position. My neck and shoulders ached terribly and I felt that it had to do with my bad posture as well as the neuropathy. The guy I went to was wonderful! When he worked on my neck and around my shoulder blades you could hear things crunch and pop. I had to ask myself why I waited so long, and signed up for another session next week.

Wednesday we met Lauren and Mike at the train station and we all headed up to New York. The main purpose for the trip was to see John Stewart and a taping of the Daily Show, one of our favorite TV programs.

When we checked into our hotel we were given the option of getting a suite rather than two separate rooms. It was a great idea which we took advantage of. We had a two-bedroom, two-bath suite with a kitchen area, complete with an oven, microwave and refrigerator.

Shortly after we put our clothes in our rooms we took off for lunch and then went to the Guggenheim – one of our favorite museums in New York. Lauren and Thierry walked and Mike kept me company in a cab – my days of long walks are, unfortunately, over due to the neuropathy in my feet. The gallery had a show called “Chaos and Classicism” which looked at Italian, French and German art during the period between the two world wars. The exhibit was intriguing, and they had some magnificent early Picasso pieces that I adored. There was also a gallery of Kandinsky works from the period 1922-1933, another favorite.

After enjoying the exhibits, we taxied back to our hotel. We picked up beer, wine, cheese and olives and relaxed in our suite before heading to Tribeca. There we had a good dinner at Locanda Verde, a restaurant partly owned by Robert De Niro.

Thursday was the big day, when we were to see John Stewart. After breakfast we took a walk in the neighborhood and found a furniture store that carries a chair I was anxious to show Thierry. I thought it would make a great addition to our living room – especially since the chair we bought just four years ago seems to be falling apart. We ended up buying two and delivery is scheduled for January. I am so excited! They actually are recliners – but don’t look like recliners. Yes, I am at that stage where I need a recliner!

Everyone walked me back to the hotel then took off for Rockefeller Center. After their power walk, everyone met me at Macy’s. We walked around a bit, but it was bitter cold the few days we were in the City. We took a cab to Hell’s Kitchen where the studios are located and found an Irish Pub to warm up in.

We had lunch and drinks (not Lauren, however) which made the two-hour waiting period to show time fly by. At one point a couple of regulars came in and the bartender started to mix Manhattan’s. Mike and I watched him, and having been satisfied that he knew how to make them, we ordered two. He made the Manhattans with Maker’s Mark (bourbon). They were great – although I think Mike is used to having his Manhattan made with Canadian whiskey. Bourbon is a little harder to get used to.

We enjoyed the taping of the show and got to see Mike Huckabee, who was John’s guest. Although I would never vote for him in any election, he can be a good interviewee. The show was a bit solemn as John wanted to talk about a bill Congress is ignoring, which would provide aid to the individuals who responded to the 9/11 attacks and are now suffering illnesses as a result.

Rather than go out to dinner that evening, we went back to our hotel, picked up some soup and egg and potato salads and brought the cheeses and snacks back out. The next and last day was a sunny one in the City, but still a bit cold. We walked around after breakfast, bought some books and then relaxed until check out.

Yesterday was Thierry’s birthday. Thierry took the Christmas Tree out of the box and set it up. I had a visit from two new house-cleaners. Oh JOY! They came in here and tore everything apart (well it seemed that way). Four hours they spent here, I am so pleased with their work. If they are willing to come back into the city – I would be thrilled to have them here.

We then picked up Kirk and Lisa and headed to the parent’s house for dinner. Jean cooked a wonderful meal with help from Ann and Joan. Juan made morcilla (blood sausage) and he found a kindred spirit in Thierry when it comes to this gastronomic delite. I did not try it but a few at the table did; some even liked it, including Thierry! Then we once again sang happy birthday to Thierry. Jean’s friend, Teresa, arrived from Spain on Thursday. Teresa is a reflexologist. There is nothing more soothing than having your feet worked on, and that is what she did. Oh I was in heaven.

When we got home, Thierry and I decided to go out for a drink – not something I do too often these days. We had a nice time at a local bar and got home before midnight. I then spent some time on the phone with my dear friend Barbara on the West Coast, getting to bed after midnight would you believe!

I went to bed with a big smile on my face with thoughts of what a great week it was!

PS: Thierry finally got the lights to work on Curlew. Here she is decked out for the holidays!

2010-12-10T21:39:00.001-05:00

I am well aware of the fact that it has been two weeks since I wrote my last blog. We had visitors from Holland last week (that is excuse number one). The second excuse is that I have had a hard time getting myself to type as I have been pretty negative lately and feel that anything I write will be a downer. As I type this, I am also thinking that that is the reason I started this in the first place. Not to wax political or philosophical, but to share how I feel, both mentally and physically as I go through this treatment. It seems that I get very down a few days after my treatment – which is usually around the same time the side effects kick in.

Well, I have decided to write something and keep it positive, this time! I may write again in a few days but don’t promise that it will be a happy, life is wonderful, piece.

As I mentioned above, our friends Jeannine and Carl visited us for the first time in our new home. I think 1993 was the last time they were in the US. They are a wonderful couple who are fun to hang with. They are also very independent, and didn’t hesitate to go off and spend time on their own. I think they timed their trip well, as the city is resplendent in its holiday attire.

We took a ride out to Longwood Gardens in the suburbs to visit the only horticultural center in the Philadelphia area with an indoor conservatory. Spread over 1,000 acres, the development of Longwood began in the 1930’s by a wealthy businessman, Pierre DuPont. It had been a long time since I had been there, and was pleased that Jeannine (and Carl) seemed to genuinely enjoy the surroundings.

The weather was really quite good while they were here, with only one day of rain. Timing was also good as I had chemo on Thursday during their visit. This meant that I actually felt close to being human for most of the week. We had dinner with my folks and dinner later in the week with our friends Lisa and Kirk. They got to experience a Macy’s Christmas sale and saw the incredible show in the lobby of the Comcast Center – a must see if any of you come to Philadelphia.

They left on Saturday, and we were sad to see them go, but thrilled that they took the time to visit.

This chemo treatment went much better than the last. I guess my feeling so poorly after my last treatment had to do with being ill the week of my treatment. I have actually worked quite a bit this week, but do crash pretty early in the evening.

Thierry and I will pick up our tree from my sister’s basement this weekend (it’s a fake!), and gradually begin to decorate for the holidays. Thierry doesn’t like to put the tree up until (at most) a week before Christmas. Thierry put lights on Curlew which we should be able to see from our window – but something went amiss – maybe we’ll have a picture in my next blog.

The big news – which brings me great joy – is that Lauren is pregnant! I have pictures of the ultra sound if anyone is interest. I decided I will begin to brag now as I am not sure how long I will be able to brag when s/he is born – which may be around July 15th.

We are looking forward to a busy week. I have much work to do and we leave Wednesday for New York. We are going to the Daily Show on Thursday, which was made possible by Mike. Hopefully the weather stays around freezing (unlike our trip three years ago when it was 0oF) so we can walk and enjoy the city.

Today was a pretty good day… I’m hanging in there.

Thank You

2010-11-25T11:39:00.000-05:00

As I sit here and gaze out the window watching the snow falling lightly in the city, I am thinking about the meaning of holidays and how they impact our lives.

Today, as Americans celebrate Thanksgiving, I suppose we should be thinking about all the things we are thankful for. I am sure, however, most of us are thinking about the cooking we have to do, how we are going to fit all the people around the table or packing the car to get us to our family dinner.

Hopefully we don’t need a holiday to remind us that we can devote small amounts of time each week (month or year) remembering our parents, giving gifts of time or other resources to those in need, and finding ways to let our friends and family know how fortunate we are to have them in our lives.

As I write this I know I am remiss in thanking all of my blog followers for reading my rants, commenting and showing support as I go through my cancer/chemo experience.

Thanks to all of you. May you be surrounded by those you love and your lives be filled with joy.

The Blahs and the Blues

2010-11-21T11:39:00.001-05:00

It’s a beautiful Sunday morning. The sun is streaming in and I have plopped my butt down on the couch to take a breather and write my blog.
I take a lot of breathers these days. Since getting back from our trip, I have spent more time on the couch than I have doing anything else. Saturday and Sunday after chemo Friday were uneventful. I felt pretty much like myself. Monday I couldn’t get out of bed, although I made a great effort. I had a business appointment at 11:30 I was hell bent on keeping. I got up, took a shower, laid down, got dressed, laid down, forced some food, laid down, then put on my coat, got in the car and drove three blocks, parked the car, called my appointment and cancelled. I drove back home, got into my jammies and went to bed.

Tuesday wasn’t much better, although I did get dressed. I just had no energy. If I stood too long, I felt like I was going to drop, so another day of lying around. Again I had little appetite, and have lost about 10 lbs in two weeks (this has me a bit worried). Thierry once again was fetching me soup, tea, etc., and made a wonderful spaghetti and clams dinner.

I spoke with my physician’s assistant who suggested I come in the next day for fluids. When I awoke Wednesday I felt worse. I couldn’t walk very far without feeling faint, and once again had no appetite. When we got to the oncology center the PA called my doctor. They decided to give me a brain MRI and lung PT to make sure the cancer hadn’t progressed. Fortunately the tests came out negative. I went to the infusion center and had blood tests taken and was set up to receive fluids. By this time I was actually feeling a bit better and able to walk without assistance (Thierry was taking me to the various offices in a wheel chair!).

The blood tests all came out normal, giving no indication of what was wrong with me. The only thing I can assume is that this was a reaction to the chemo after having been ill the week prior. The PA had nothing of substance to offer, in fact, she made comments like: “Maybe you just can’t handle chemo.” She also shared the fact that another of their patients is receiving the same treatment and “she is handling it quite well!” As if I wasn’t depressed enough, her words were pretty damning.

The PA then decided, having not looked at my ears, nose or throat – or listened to my chest – to prescribe antibiotics. She just figured I must have something lingering that was causing me to be unwell. I decided not to take the antibiotics and made an appointment with my primary care doctor. The appointment was Saturday, and he could not find anything that could be causing my malaise.

There were several bright spots that shone through this miserable week. They were my friends and family that gathered round to support me. Lauren was here twice to keep me company. Ann came to get some work done and have lunch. My friend Barbara made the most wonderful chicken soup, better than any medicine a doctor could prescribe and took me to the doctor and food shopping. Faye came over to keep me company and brought wonderful bread to go with the soup. Lisa made me a sweet potato pie to help “pump” me up. A good choice as my mouth is very sensitive as a result of the chemo. My sister came and stayed with me one night as Thierry was away two nights bringing the boat to Philly from Baltimore.

Each day I feel a bit better, but not really well – not like myself. I have been fighting thoughts about death and dying all week, convinced that this is what was happening. I am trying to force myself to do a little more each day, and may take a walk this afternoon. I have business appointments tomorrow which I fully intend to keep, and am planning to get ready for the Thanksgiving holiday.

It’s hard sometimes, but I try to remind myself I am alive today, so I’d better make it the best it can be and appreciate all the wonderful people in my life.

Westward Ho!

2010-11-14T19:44:00.000-05:00

Finally I have a chance to sit down and write; so much to catch up with.

We left the morning of Saturday the 6th for Chicago where we were to begin a six day trip I had booked on-line for a scenic railway tour that would take us first to the Grand Canyon and then to Los Angeles.

We had two hours to kill before our departure from Chicago’s Union Station. Just enough time to grab lunch and shop for sleep-ware which neither of us packed… a good thing considering how much time I spent in bed during the trip.

We boarded and left the station on time. We had booked a sleeper car with a bathroom and shower. Our sleeper had a long settee on one side, a teeny tiny sink and counter on the other, space in between that configuration to allow for a small open area and a single seat along the window. The toilet and shower combination were in a closet behind the sink/counter. We had two fairly large windows which gave us an ample view of the ride we were about to take. One thing you notice as soon as you enter these trains is the stale odor that permeates the air.

Both of us had wanted to take a scenic rail trip, and had wanted to see the Grand Canyon – a trip I couldn’t make by car. This particular package included meals while on board the train, one night at a lodge in Williams, Arizona, (along with a meal), a trip on the Grand Canyon Railway into the park, a two hour bus tour in the park, a room at the Maswik Lodge, a return trip to Williams and onto Los Angeles which included one night at the Biltmore Hotel.

We settled into our car and claimed our territory. You are required to schedule your dinner and lunch time and had arranged a 6:15 time slot for dinner that evening. We were told that our time would be called. The view leaving Chicago was not unpleasant taking you primarily through residential areas. Then we hit the cornfields, miles and miles of cornfields that had been plowed for the winter. Dusk was creeping in, casting a golden light to the browned fields. Dusk is my favorite time of the day for the way the light falls on buildings, trees and cornfields.

We waited to be called for our dinner seating, but 6:15 passed and no call came, so we figured we would walk down to the dinning car. Well, it was made clear that we were not to come before we were called, but after a few minutes we were told to take a seat. One of the rules of the dining car is that you share your table. The booths seat four, so if you are a party of three, you may expect one guest. This is actually a good idea as you get to know others on the train and you could find yourself in some interesting conversation. Well it didn’t happen that night. We sat with two very odd sisters from Long Island who also happened to be our neighbors in the sleeping car. They were extremely chatty and Thierry told me he heard some “interesting” conversations from where he sat in our car.

The food was really quite poor. Okay, as Thierry says, the trip was not about the food; but when you are Italian, it is always about the food. I ordered the salmon and mashed potatoes. String beans and salad also came with the dinner. A good thing! The salmon tasted as if it had been processed and boiled. The potatoes were from the box, but edible. We got through dinner and went back to our sleeper. About an hour after returning, I came down with a bad case of the chills. I tried to warm and curl up on the settee, and may have slept a bit. We asked for our berths to be turned down at 10:00 and I promptly went to sleep. The next morning I felt awful. Fortunately Thierry had a thermometer with him. My temperature was 100.6. I ended up sleeping almost the entire day, waking long enough to take a peek out the window, drink liquids and pop Advils.

Thierry was on his own for breakfast, lunch and dinner – and he did, in fact, have a few interesting conversations with other passengers.

The train ride took us through Iowa, Missouri, Kansas, Colorado, New Mexico and then into Arizona. It was fascinating to see the landscape change, as Thierry put it, “cornfields changed to moonscapes in New Mexico.”

In New Mexico, hills and plateaus seem to rise out of nothing in the middle of vast fields when we entered the Santa Fe Trail. We then hit the prairies and were entertained by an entirely different landscape.

We de-boarded the train at 10:30 p.m. in Williams, where we were met by a small bus and taken to the lodge. We were the only two in the bus, which rambled up and down a pitch black dirt road for sometime before reaching the highway. We checked in and went right to bed.

Monday my fever was 101.2. Thierry was extremely concerned and wanted to get me to a doctor or hospital. I told him we were going to the GC, especially since it didn’t require any effort on my part except to get aboard another train and bus. And we learned they had a clinic there. The one nice thing about the trip was that your luggage was always taken care of – they removed it from you room, put it on the train, from there to your next hotel and then back again.

The Grand Canyon Railway which takes you to the park is charming, designed to look like something out of the 1800’s. The ride included a strolling guitarist who serenaded us for a quarter of an hour. The ride took two hours and fifteen minutes – mainly because the train travels at about 30 mph for a 65 mile trip.

When we arrived at the park our bus tour was upgraded to another which included lunch. What a treat, a buffet at a large cafeteria which consisted of a salad bar (thank goodness), ultra cheesy pasta, chicken, beef and fish in various sauces, rice and potatoes. I was craving chicken soup the entire trip – their offering was cream of potato with bacon – ick.

The tour took us along the southern rim of the Grand Canyon and we were able to get out and walk around and take pictures at two locations. As Thierry said, it was AMAZING, a term we rarely use. The sheer magnitude of the canyon, the colors, the way the terrain is sculpted and carved are breathtaking. (See pictures in photo gallery). So is the altitude! Both Thierry and I found ourselves struggling to move around our room on our second day there.

We checked in at the Maswik Lodge and I promptly got into bed. Again, Thierry was on his own for dinner. I won’t go into it other than to tell the story of Thierry smuggling a tiny bottle of wine out of the dining hall. When he bought the first along with his meal, he was told – these don’t leave the building, and the checker removed the cap and threw it away. When he picked up a sandwich for me, he bought another bottle of wine and the same thing happened. So, he snuck off into a corner, stuffed a napkin in the neck of the bottle, put it in his pocket and snuck out. Luckily he didn’t spill any on his way back to our room which was a bit of a walk from the lodge – in the pitch black. They have no lighting around the facility.

The next morning my temperature was down to about 99.5. I had an appetite and was craving a good breakfast. We choose the El Tovar hotel which is situated along the rim and had our first good meal. We then went to the clinic where they took chest X-rays, blood and urine tests. The upshot of all this was I had an elevated white count and was handed a bottle of antibiotics. We returned to the El Tovar where we had some lunch and I then parked myself in their lobby near the fireplace while Thierry took a walk along the rim-trail and snapped more pictures.

We took a final look at the “big ditch” and boarded the GCR to head back to Williams. On the return trip we were boarded by “bandits”, had to give up a few bucks, and were once again serenaded. We were treated to yet another buffet at the lodge in Williams, but they at least had a good chicken-rice soup. We boarded our train for LA at 10:45 p.m.

Neither of us got much sleep on the way to LA. We rose about 4:30 a.m. and made it to the dining car for breakfast. We arrived at LA and grabbed a cab to the hotel. The Biltmore was built in 1923 and sits in the heart of the business district. The interior is decorated with frescos, murals, marble fountains, bronze stairwells, and crystal chandeliers – quite an impressive building. We had a pleasant room and once again, I was craving a good breakfast – so after walking the neighborhood, I had my second most wonderful meal on the trip – the eggs and the bacon were perfect!

We went back to the room after breakfast and I promptly went to sleep. After a few hours Thierry decided to take a walk and visit the new concert hall designed by Frank Gehry. I wasn’t up to the walk so yet again, he went alone – but was really thrilled with what he saw and the design of the building. We had a nice dinner that evening then turned in early as we needed to be up and out by 7:00 a.m.

Our flight home was uneventful. Southwest was very efficient; we arrived in Philadelphia about 20 minutes late. Our friends Lisa and Kirk picked us up and I made it to bed by 10:00 pm. I was able to have my chemo on Friday and have remained fever-free.

All-in-all, I am glad we pushed on to the Canyon. This was not exactly the trip I had in mind, and worried about Thierry the whole time who was worried about me the whole time. It was a memorable trip in many ways.

Almost Made it as a Candidate for the Darwin Award

2010-10-31T22:11:00.001-04:00

It was a blustery day on the Bay today (Friday). Thierry and I came aboard Curlew on Wednesday and took her out on Thursday, figuring this will be our last sail of the season. The temperature was still a balmy 70, and we had a good wind enabling us to sail down the Patapsco River and the Bay, We anchored in a quiet spot on the Rhode River just south of Annapolis and were able to enjoy a beautiful sunset.

We left the anchorage around noon this morning and headed east to the Wye River. Tomorrow we go on to St. Michaels where we will meet some friends who are driving down for the weekend.

Today the winds averaged 25 knots, with gusts over 30. The skies were an incredible blue, laced with puffy white clouds. The winds were from the NE, and the waves were pushing 4 ft and steep; high for the Bay. As we were crossing the Bay, we noticed a very large sailboat heading north. Thierry thought that she was a racer and wondered if there was a race going on. Before too long, the boat got closer – and closer. She looked to be about 60’ or so; black hulled with white stripes angled on either side of her bow. She flew huge Mylar, high-tech sails and had a crew of about 15, most of which were hanging over her port side as she made her way north.

We were on broad reach with the wind on our starboard quarter. The approaching boat was on a port tack – all this meaning we had the right of way. The racer was making incredible headway, and seemed to come up to our starboard side in a matter of minutes. Thierry seemed to think she was going to pass behind us – but from where I was sitting, this boat looked like she was going to hit us.

So, what did we do, I grabbed my cell phone to take pictures and Thierry went below to get the camera. Here we both are, cameras in hand watching this boat gain on Curlew – Thierry saying, well we have right of way and there really is nothing we can do! The racer was flying, literally- Thierry said she was planning, meaning her bow was out of the water, spray flying everywhere. We were so close I could see the expression on all of their faces – none of which looked panicked, annoyed (that we were in their way), or in any way interested in the two idiots standing on deck trying to take pictures.

Several thoughts ran through my head – the main one was: So when they recover our bodies, will someone comment on the fact that we were standing there taking pictures when we went down? Would they find the cameras which would show the point of impact? I really didn’t see how they could miss our stern. Oddly enough, I wasn’t afraid, but I sure felt like a bit of a dope. It made me think of those people who take pictures of natural disasters like tornados. Can you imagine standing there being pelted with 100 mph winds, hail and debris, taking videos of a tornado so you can get it shown on the local news? My next thought was – so I guess this is how one becomes qualified to win the Darwin award; too stupid to avert danger!

Obviously, since I am writing this, we came out of the incident unscathed. But if you could have seen how close this boat was and how fast they were moving – I don’t think they passed more than a few feet behind Curlew. You could hear the loud roar of their sails and feel the spray from their boat. It was amazing. As it goes, I never did get a decent picture because I had sunglasses on and couldn’t see to shoot. Thierry got a few as she approached and after she passed us. I have since learned where the video buttons are – so I’ll be ready next time!

It is now Sunday evening, and since I hadn’t posted yet, decided to finish out the weekend.

We spent Friday night in Dividing Creek off the Wye River. This is a very secluded and scenic anchorage. On Saturday morning we left for St. Michaels where we arrived about 11:30 a.m. We ate lunch aboard and headed into town around 1:00. Our timing was perfect, as our friends from Philly, Barbara and Barry, arrived around the same time, having driven down that morning. We met them later in the evening for dinner. Today they came aboard and we had a nice motor down the Miles River and a great sail back to St. Michaels. The winds were 25 knots gusting to 30 from the NW, so we plowed through on the northern leg of the trip. Fortunately the sun was blazing, so it kept the temperatures at a very comfortable 60+ degrees.

When we got back to the anchorage, we left for town and had a fun time at Ava’s Wine Bar where we had drinks and dinner and great conversation with a variety of bar partrons. Now, back on board, we are hoping that the winds die down enough tomorrow to make our 45-mile trip back to Baltimore bearable.

It has been an incredible and very fun couple of days!

PS: I got a call this week from the pharmacy company who will be sending me my drugs. All I have to do is call each time I need a refill – and there is no co-pay! Now I just have to figure out how to overcome all the side effects But, as Christopher Hitchins just said in a recent interview on NPR: because the drugs are so toxic, they must be killing something – hopefully it is the cancer and not the rest of me.

A Brief Update

2010-10-26T17:23:00.000-04:00

I am feeling a bit draggy as I write this, so reader beware.

I had my second treatment under my new treatment plan on the 21st and ran into a bit of a glitch. My visit with my doctor went well. I explained a few of the side effects I had after my first treatment which consisted of an itchy, facial rash and constipation (ugh!). She seemed pleased that I was manifesting some symptoms as this was an indication to her that the drugs were working.

She told me a funny little story about a woman who was in a trial that my doctor was involved in some years ago for one of the drugs I am taking. The woman had a very nasty, fast growing breast cancer that was not responding to the drugs of the day. Fortunately, she responded well to this chemo; however, one day she came to the doctor's office in a wheel chair. My doctor panicked, thinking this doesn't bode well for the study. She asked the woman why she was in the wheel chair. The woman told her that the soles of her feet were sore, so rather than walk she decided to just get in a wheel chair. The doctor was concerned that this side effect would prevent the woman from continuing in the trial. When she told the woman how important it was that she notify her of the side effects, the woman stated that she didn't think this was a problem... especially since she was finally responding to a treatment, and she had no intention of stopping!

The drugs I am taking cause, among other things, painful feet (primarily in the balls of the feet). Foot and hand syndrome as it is called, can cause the hands and feet to become red, swollen, painful and blistered. Oh joy. So far, the only thing I have noticed is an increase in the neuropathy in my feet. They have also become very sensitive to uneven shoe-soles and seams in socks, and it is very uncomfortable to walk barefoot.

After my meeting with the doctor, Thierry and I went to wait for my blood test results and treatment. About 11:00 we were informed that my white count was low which could prevent my receiving treatment. Another blood test was taken - this time from my arm rather than from my port. The test results were vastly better and I subsequently was treated. We finally left the infusion center at 4:30 pm - some 8.5 hours after we had arrived!

Since my white count was low, my treatment plan has changed - at least for this week. I also found out that one drug I am given - Zometa - which builds bone and has been shown to be very effective in treating bone metastases - can only be administered once a month. I am now receiving treatment every three weeks, so I will have to arrange to have this infusion done on an off week. Not a real problem, just didn't realize this until my infusion nurse informed me.

So, I am learning how to adapt to the new treatment. I find that the day after I feel a bit nauseous. This is something that really is not treatable with anti-nausea medication. Many of the anti-nausea medications which I took in the past made me dizzy and sleepy. It is something I can deal with and when really necessary, take a few puffs of a joint (yes, a marijuana cigarette). This not only relieves nausea but helps my appetite and calms me. Often right after treatment I become restless and suffer what could be described as restless leg syndrome, only it affects me all over. By Sunday afternoon I begin to crash and on Monday I don't feel like doing anything other than staying in bed - but I won't let myself succumb to that - totally.

I have also noticed that my esophagus is becoming sensitive - especially right after treatment. By that I mean I feel it when I drink something hot. I am not sure which drug is causing this, so am not sure what to do about it. I take my pills with food, rather than after I eat, as it seems to help me digest them better. My tastes are beginning to change - again, and my appetite has dwindled.

Regarding the pills, I was told by the social worker that my insurer did say they would pay for the drug under the medical (chemo) portion of my plan. The problem is they have no mechanism in place to distribute a drug that does not go through a pharmacy plan. In essence, there is no way to bill for the shipping and handling. This is all great, except I still don't know when, how or where I will get my drugs.

I was hesitant to write this blog as I felt it would be a downer, but then, this is what some of my days are like. Since my treatment on Thursday, I made two trips to the doctor with dad, we had company for dinner and actually had a good time with friends watching the Phillies lose, made dinner at mom'n dad's on Sunday, went to the gym, and went to a concert last night. Today I had a client meeting which was the kick off of a new project and tonight we have our book club.

Hey, it's been a good week.

Bedside Manner

2010-10-18T21:09:00.003-04:00

It’s late Sunday evening and I am under a lot of stress. The Phillies lost their first game in the playoffs and are playing terrible baseball tonight. Thank goodness the pitcher is doing a decent job, although he just gave up a run. I am not sure how long I can sit here and write, but will give it a whirl.

It seems when a subject comes your way twice in a few weeks, it is one you should write about. A friend brought my attention to an article in the local paper written by a spouse who accompanied his wife to a doctor’s appointment. If I recall correctly, she was diagnosed with cancer (I believe breast), and he was shocked by the doctor’s attitude. From what I remember, the doctor’s attitude suggested there was little hope for her. They subsequently went somewhere else, but the point was that the doctor showed little empathy for the patient.

When I was at the breast cancer conference last week, one of the speakers was a survivor who was there to talk from the patient’s perspective. She told the story of her visit to the doctor when she received the news of her diagnosis. The female doctor informed her of her triple negative breast cancer, then basically gave her a bleak prognosis and also showed little empathy. The patient proceeded to get other opinions, landing with my doctor who provided some “hope”.

I have had this experience myself, both in dealing with my own disease and that of my sister. When Jean was diagnosed about three years after my first bout of BC, we went to the pros at the Hospital at the University of Pennsylvania. Jean had a stage III cancer, based on the size of the breast tumor and the fact that it had spread to her lymph nodes. The docs at Penn basically wrote her off – and proceeded to talk about bone marrow transplants (the drastic treatment that was given at that time when the disease spread). Then she saw the man who would become her surgeon, Dr. Schwartz. He looked her square in the eye and said he could treat her and shared his experience with this type of disease and basically, gave her hope; not a promise of a cure, but hope.

When I spoke with an oncologist after my latest diagnosis, I looked at his face, and although he emoted much empathy, he also looked defeated, tired and worn. Even his voice sounded glum. I am sure after years of treating cancer, a person must become somewhat jaded and at times, feel defeated; however, this was not an attitude I either needed or wanted. When I met my current oncologist (the same as the guest speaker’s), she took my hand, looked me in the eye and said “I can help you”. She didn’t promise to cure me. In fact, she didn’t make any promises; she just projected confidence and gave me a feeling of hope.

The latest unpleasant doctor experience I had was with an ENT. Suffering from the effects of the chemo, my sinuses were a mess. The doctor I saw barely looked at me, spoke to his intern the entire time – even gave her my instructions, ordered an MRI and never followed up with me. You know that was the last time I ever saw him – and I will never see him again and will be sure to tell everyone how awful he was.

Are doctors so busy that they don’t have to care about treating patients as human beings and with a little dignity? Many doctors over-book and make patients wait for hours in the waiting room. Obviously they haven’t heard about customer service. But if most patients are like my parents, things like this don’t matter – my parents find a doctor and stick with them, no matter what! They are of the era before Google! When the doctor tells them something, it must be right. When a doctor tells me something I Google it; then I go back to the doctor and start questioning.

Now, I know some very good, very fine doctors – so this is really a generalization. However, I am sure many of you would agree – it feels like the norm.

The article mentioned a movie starting William Hurt (called “Doctor”). He is a doctor who is diagnosed with throat cancer. He gets to experience first hand what his patients have dealt with and it is this experience that changes his perspective. The author suggested that all doctors see this movie. I haven’t seen it, but my friend, a nurse, agreed with the author.

On a better note, the Phillies did win the ball game. Today was a wonderful day in the city. We managed to get the pictures of the karaoke party from Lauren and I figured out how to upload them to YouTube. So, for those of you who were there, check yourself out. For those who weren’t and want a chuckle, take a look by going to YouTube and doing a search on iwanaberma (until I figure out how to link them to this blog). Mind you, I did not detect any candidates for American Idol; but what a wonderful group of people they are!

Oh, I understand that the pill thing has been straightened out – more on that next week when I find out what is really going on.

It’s been a fine day!

Cleaning Day

2010-10-10T22:12:00.001-04:00

The last few days have been absolutely beautiful ones in Philadelphia. So, what did we do? I went to a breast cancer seminar for Triple Negative Breast Cancer in African American Women from 8:30 – 1:30 yesterday (Saturday), and TD went to a simulcast at a local movie theater of a Metropolitan Opera performance of Das Rheingold in the afternoon from 1:00 – 4:00. This morning I went to the gym, then decided to clean the condo – and of course, we had dinner at mom’s tonight – prepared by Jean and it was wonderful!

We were supposed to go to the Annapolis Boat Show and spend a couple of nights on Curlew, but some things came up with Thierry and we decided to postpone until Monday, the last day of the show, and one of the more interesting. You get to watch the break-up of the show which is like watching a ballet on the water only the dancers are the boats, with lots of near misses – but often a crash or two – an event in itself, and a big party. Watch this video from last year’s show: http://www.youtube.com/watch?v=xfOl6lcrhL8&feature=player_embedded

Our housecleaner injured herself several weeks ago, and although she offered the services of her sister, I haven’t been motivated to call – until today. Actually I think it happened (her injury) at the end of August, how time flies! Thierry was away then, and on occasion I would be inspired to get off my duff and take a swiffer (dusting thing), and clean off the furniture. I even ran the vacuum a few times – especially before the book group met at the condo.

Mind you, my housecleaner doesn’t clean like I would, but she generally gets the basics done. This morning as I was vacuuming, I realized how much I really don’t like cleaning. I especially have a hard time with vacuum cleaners. Having had several in my lifetime, I have yet to find one that isn’t cumbersome and unwieldy. I have had up-rights and canisters, but no matter what size or shape of machine, I feel like they are out to get me. I mean, my legs get caught up in the cord, the hose gets twisted the wrong way, the canister either climbs up my leg or ends up crashing into furniture or turning upside down.

Thank goodness we don’t have a “lot” of stuff around (knickknacks) because moving things drives me nuts. As it is I have to skirt the edges of the bookshelves in both the library and office, thinking the whole time that there is an awful lot of dust that’s hiding in and among the stacks.

For weeks I had wondered why the condo smelled so chemically toxic every time the cleaner was here. I realized why when I opened a bottle of lemon scented Mr. Clean. Ugh! I thought I was going to lose it – the smell was incredibly offensive. I dumped the bottle down the drain and swore that’s the last time I buy that stuff. From now on I am going green and unscented if that is possible! Swiffer floor cleaner is next to go out of my cleaning materials inventory. These smells are bad enough under normal circumstances but when you are on chemo, the intensity is magnified by about 100.

Although I didn’t scour the shower, I did manage to clean a lot of things that my housecleaner consistently misses – so I feel like things are in good shape. I will give her sister a call tomorrow, and make sure at least once a month, I go through and catch all of those misses.

There have been two times in my life when we hired a cleaner who lasted only a few months. I was never happy with their work. I used to pay Lauren to help with cleaning when she was a teenager, and she did an amazing job when she got down to it. She even started cleaning for her aunt, and did some house cleaning when she went away to college. Does anyone really think their house cleaner does a good job? The answer is, they do if they get the basics done and lighten your load at any step.

The seminar I went to was good. I walked away with two bits of info. One has to do with overall survival rates of folks with my type of cancer, which isn’t as horrible as I thought. The other was about a new drug in the pipeline I need to explore. My sister Jean came with me which really made the whole thing easier for me – she was great company. She even got up at 6:30 a.m. on her day off to come into town!

My birthday was on Wednesday and we had great fun at a Karaoke Bar in China Town. Everyone sang, danced, laughed and seemed to have a really good time. Definitely something we should do more often. It actually is a boost to go dancing and just letting loose – something I never did/do enough of!

They still haven't been able to straighten out my chemo-pills. Fortunately I was able to get a stash so I am okay for a while. Amazing, one hand of the insurer does not know what the other is doing.

It has been a wonderful week, the house is sparkling and the Phillies are winning in what could be the last game of this series – making them division champions! Go Phills!

Between the Two of Us

2010-10-02T17:35:00.000-04:00

When someone tells you something in confidence, who do you tell? Do you keep it a secret from everyone, or do you have a list of your own confidants that you share the secrets of others with?

This is a conversation that Thierry and I have had on more than one occasion. I will admit that there are things I am told that I won’t tell anyone. Especially if the person says, “this is strictly between you and me”. Then there are things I might share with those who I consider a disinterested third party. I’ll share the story and most likely won’t name names. Then there are one or two people (namely Thierry and Lauren) I may share someone else’s secret with, especially if I think they won’t really care about the subject matter – or if it is something I want to work through. I know if I tell Thierry, the story will go no further – as a matter of fact, he most likely forgot about it three minutes after I shared the tale.

But then who will Lauren share the secret with? Will she keep it to herself or share it with her husband? Where will it go from there? I know there are things I absolutely cannot share with my sisters. And please sisters, do not take this as a slight. There have been times when things have been said that should have not been shared – period. I am sure we are all guilty – me as well! It just is how it is among family I guess.

Thierry’s tongue-in-cheek theory is that if you tell a woman something in confidence it is like a women saying no when she means yes (this statement could incite a riot!). Meaning that by saying the subject is confidential you are giving the go ahead to spread it around!

I do try not to talk about people’s personal lives with others. I am guilty of talking to one of my physical therapists about people in my life who cause me angst or who I believe I may have caused angst - and named names. Of course, I justify this by saying it helps me work through the issues that caused the angst in the first place – the listener just doesn’t happen to be an actual psycho-therapist.

I like to think when someone tells me “this is strictly between the two of us”, that it stays there – between the two of us. Conversely, I like to think when I tell someone something in confidence, it stays there as well. Perhaps Thierry would say if you don’t want someone to find out about something, just keep it to yourself.

I began my new treatment on Thursday. I receive an infusion of Avastin and Ixabepilone (Ixempra) which takes a total of 4 hours to administer. In addition I receive pre-meds and Zometa. It was a long day! The Xeloda issue (those are pills) still has to be resolved. The manufacturer told the social worker that it is covered under my medical plan. At first they (the hospital) tried to submit a prescription to the regular drug store who told us that they could not bill the insurer and it would cost me $5,000 for a 30-day supply. The social worker then tried the next level of pharmacy – who informed me yesterday that they cannot work with my insurer. It is now being reviewed by yet another pharmacy. Fortunately I was able to get my hands on a supply which should last until this issue is resolved. (Next stop Canada???)

It was also fortunate that I read the brochure and info sheets on the drugs. I learned that I am not supposed to drink grapefruit juice (which I have been doing lately), nor am I supposed to take folic acid supplements such as what is included in my multi-B vitamins. Keep this in mind the next time your doctor prescribes new medication for you!

The picture at the top of the page is of our rock-on-rock sculpture. We collected these rocks at the Roque Island Archipelago this summer in Maine. We thought they would make a fine addition to our balcony – and they have.

It has been a beautiful few days now that the storms have passed, and a great week – this is news you can share.

How Are You..... Really?

2010-09-26T09:22:00.001-04:00

Several times over as many months I have spoken with acquaintances that I don’t talk to very often. All asked the same question, how are you? All know that I am dealing with cancer, again.

So, I give my usual response, I am really doing well, which is also an honest response. Then they will ask, how are you feeling. Again, I iterate that I am really feeling pretty good. Sometimes tired, but overall, I am doing well. The conversation may go on to other things, but then the person says, well it all sounds good, but I’d like to know how you are, really!

The last time I was asked this question I lost it. My response was something like: What would you like me to say? I am really doing fine; trying to live each day and enjoy the life I have left. I don’t believe in dwelling on the negative and becoming morose over my fate. I choose to live…. Mind you, I said all this with much frustration and anger in my voice.

Why do people who I see and speak to so rarely think that they can illicit some deep, emotional response from me about my situation? Is it arrogance or just plain ignorance that causes one to believe that people are so ready to share their deepest feelings and fears with mere acquaintances? I have enough trouble thinking about these things myself, don’t like to talk about them – period – why would I want to open up to someone who shares so little of my life?

You may be thinking that I am overreacting here, but think about it! I mean there are a lot of questions one can ask a cancer victim. How are you is fine – so is:

How are you handling the chemo?
How frequently do you receive treatments?
Are you able to continue working, go out, travel?
DO YOU MIND TALKING ABOUT YOUR CANCER AND/OR TREATMENTS?

I guess it is our job to educate those folks who really are concerned but don’t quite know what to say. When Doug passed, the pastor of our church where the services were held made an interesting observation. He told me that guests would be unsure and somewhat awkward, not knowing what to say to me and Lauren, and that we would be spending our efforts trying to put them at ease. That was, in fact, the case. I guess talking to a cancer patient is a similar conversation. People aren’t sure what to say and feel awkward. It is fortunate that most people can read signals, and when someone changes the subject, realizes it is time to shift the conversation.

So, you all may be wondering how I am, really. I did speak to my oncologist Thursday who gave me the results of the scans. The pain in my hip is osteoarthritis. The bone mets have remained stable (actually appear healed). There is some additional activity in my liver, though, so she is changing my treatment plan. I did not receive chemo on Thursday, and am waiting for the new treatment to be approved. One of the drugs is in pill form. I do not have prescription coverage and the pills cost $25.00 each and I would have to take four a day for about two/three weeks a month. The social worker is applying to the pharmaceutical company to see if they will provide the drugs to me directly at a reduced cost. Hopefully all of this will be resolved this week so treatments can resume quickly.

I am trying to stay positive, I feel slightly physically ill over the news and I really don’t want to talk about it with anybody! I guess that is how I deal with things; suck it up and cope. If I talk about it I will probably cry – and I don’t want to do that either. Maybe a doctor would say this is not healthy. I find if I make an effort to get past the fear and self-pity, I can actually manage to accomplish something constructive or do something I can enjoy – even if it is just watching a goofy movie on TV, and eek out another good day.

The Other Side of the Story

2010-09-19T12:08:00.000-04:00

In my last blog I wrote about dating after the loss of a spouse. Well, there is another side to that story; that of the dying spouse and how s/he feels about the whole thing.

In his last days, Doug never spoke about dying, nor did he speak about his life to that point, or our lives together, or what might occur after his death – with the exception of his burial. I could start talking about my life before and with Thierry now – to anyone (including Thierry) who would like to listen. The ups, downs, things I should have done better, could have done, etc. But then, what is the point? Is this a woman thing; the need to talk about your relationship on your deathbed?

As I sit here on my sofa in the living room I look around and see all of the things Thierry and I put together to create our home. When we made the decision to buy our condo, we also decided to rid ourselves of all our furniture and start fresh. Everything in here, with the exception of a few pieces of furniture and kitchenware (and bookshelves) is new, and we selected them together. We’ve roamed the streets of Rockland, Beufort and Philadelphia collecting artwork. We picked out our dishes and flatware, and carefully add pieces to our collections as we go along.

My sincere wish is that Thierry not spend the rest of his life alone. He is a wonderful companion, self-sufficient, interesting and smart. He is respectful and not the least bit condescending. He is neat, clean and never leaves toothpaste in the sink. (He can use this in his ad someday when posting on a dating site!)

Even though I know that he may likely find another mate, emotionally I have difficulty with the idea that someone will come into the home we’ve created and either settle in or start anew. Actually, I am okay if they start over – new condo, new everything (well, almost everything). Oh, alright, they can keep the condo – new everything else. I am sure whoever comes in here would want to do that anyway.

Fact is I won’t be worrying about any of this at that point. And the things I am talking about are just that – things. If it all went up in smoke tomorrow, there really isn’t too much I will cry over. So, instead of thinking about Thierry after Mary, I’ll concentrate on Thierry with Mary, and try to make our time together fun and memorable!

Yesterday we celebrated Mom and Dad’s 90th birthday. We had a catered affair at Lauren and Mike’s house. About 40 people came including Dad’s brother (and only surviving sibling) and his wife, cousins and their friends and neighbors. They both looked really well and happy. We are so fortunate to still have our parents with us.

Thierry is finally home – I picked him up on Thursday. The weather has been wonderful. It’s been a good week.

What is the Appropriate Amount of Time?

2010-09-10T20:35:00.001-04:00

Last week I met a man whose wife had passed two months ago after a long illness. He is a fairly young guy – about my age - with grown children who live outside the area. He raised the question of when is it appropriate to begin dating after your spouse has died.

What a great question. I tried to do some online research to see if there were any professional takes on the subject. I couldn’t find anything, but did come across one writing that stated that men tend to remarry more often, and more quickly than women. I do know of several instances where a man who recently lost his wife remarried within one year of her passing. I know a few women who have lost their spouse. They had good, strong, happy marriages and mourned their deaths for years and are still single.

This is not to say that women are more devoted to their spouses or their spouses memory, it is just what I have experienced. The article I mentioned above did say that women are starting to remarry after the death of a spouse at a higher rate.

Doug passed after a relatively brief illness. It was the most stressful three months of my life. All I could think about after his passing was selling our house and starting a new life; one that did not necessarily involve a man. My business was picking up; I had new friends and a great new house. I also was very apprehensive about dating again, mainly because I felt old and out of shape. After 19 years of marriage, the thought of taking my clothes off in front of a man scared the heck out of me.

My relationship with Thierry started some 20 years ago as workmates. Doug and I sailed with him over the years and he new my family. We started to see each other as friends about 4-5 months after Doug’s passing, and our relationship stayed that way for about 6 more months. While I was seeing Thierry (as a friend), I was conscious of the timing. I was concerned, somewhat, about what people would think.

Often people say “you should wait a year.” Where that came from I don’t know. I think every situation is different. When someone is suffering from a long illness, the spousal relationship goes through many changes, feelings and emotions, including a mourning period while the person is still alive. There are also those situations where the marriage may not have been the happiest. A death frees the survivor, who for whatever reason stuck with the relationship.

Then again, a person who has been married for say 30, 40 years, and had a relationship that was heavily dependent on their spouse is most likely the person to remarry quickly in order to recreate the environment they had and relieve their fear of being alone. This, they say, is why men tend to remarry so quickly.

There may also be children to consider. However, I don’t believe that the decision to date or remarry should be heavily dependent on what the kids have to say. Yes, they are going through a lot of emotions and may be suffering a devastating sense of loss, but they have their own lives and their interference in their parent’s relationship is as warranted as a parent’s interference in their own. Often children are concerned about their inheritance, and rightly so. It is up to the surviving parent to be thoughtful of dispensing of heirlooms and if possible, taking care of financial arrangements.

Each situation is very different – and personal. We can’t judge someone else’s choices. I have two answers to the question, when is it appropriate to begin dating after the loss of a spouse. This first is, go with your gut – meaning what your conscience is telling you is the right thing to do. The second is, when in doubt, do nothing. Eventually the answer will come to you.

Thierry is finally on his way home. His two crew members arrived in Newport, RI this morning, and they shipped out mid-afternoon to take advantage of northerly winds. He sent me a lovely picture of a fish that they caught being filleted. It is time for him to be home!

I had my treatment yesterday and had lots of company. We played scrabble and the time flew by. I can’t tell you how special it makes me feel when my friends and family share their time with me on chemo days.

I feel pretty darn good today – tomorrow I have my scans. I feel positive, and will deal with whatever news I get. I am off chemo this week, and next weekend we have my parents’ 90 birthday party. It has been a great week, and I anticipate another good one coming up!

Now What Was I Looking For?

2010-09-06T21:47:00.001-04:00

I took my dad to the auto body shop the other day. They have finally decided to sell their car which needs a repair before the transaction is finished. Dad handled the entire transaction/discussion and before we left, the shop-owner asked for his phone number. Dad rattled off the first 8 numbers without a problem, the last two were lost somewhere in the nether-land.

I stood there waiting for him to remember for what seemed like ten minutes, and then finally gave him the info. Dad doesn’t seem to suffer from memory loss, unlike my mother. Before I went away I had told my folks that we would go out to lunch. I told mom the night before and called again just before I left the house to pick them up. On the way to their home, I got a call from my sister telling me that mom was in the middle of making tuna sandwiches. Dad can rattle on telling stories from his childhood and working years. He also seems to be pretty aware of immediate things like doctor’s appointments and what day it is.

Two days after our trip to the auto body shop I was getting ready to go out and was packing a bag. I walked into the kitchen, wandered around for a minute with no idea what I was doing there. I left the house realizing after I got out to the street that I forgot to grab the cash that was sitting on the table.

I don’t believe any of our family members suffer from dementia or Alzheimer’s. We are fortunate that way. But isn’t that what we first think about when we can’t remember the right words to explain ourselves or someone’s name? I’ve been thinking about this for years, memory loss. It seems like it has been ages since I started to forget names of actors and the words I needed to finish a sentence. I originally blamed it on menopause, now I blame it on chemo-brain (a legitimate side-effect of chemo causing memory lapses, problems with concentration, etc.).

The reality is our memory actually starts to fade in our 20’s and progresses in our late 30’s and early 40’s according to an article by Cathryn Jakobson Ramin published in the New York Sunday Times Magazine (12/3/2004). Things like alcohol, diseases, head injury, stress, and lack of sleep can add to memory loss. According to the article, “middle-aged forgetting follows a pattern: people's names go first, because they are word symbols with no cues attached. Then there are difficulties with word retrieval. Instead of the phrase you want, you get what James Reason, a psychologist at the University of Manchester, in Britain, called ''the ugly sisters'' -- similar-sounding but frustratingly incorrect combinations of syllables.” I can really relate to this!

It appears that as we get older, prospective memory and working memory become more difficult. Prospective memory is remembering to perform some action in the distant future, like picking up something on the way home. Working memory gives us the ability to “manage several ideas or intentions at the same time.” No more multi-tasking!

There is a theory that when we get into our 60’s or so, forgetfulness troubles us less – I guess we learn to adapt or our lives become less complicated. But I know my mother (and us kids) is very troubled by her memory loss. Fortunately, they are working on a lot of drugs to help combat the problem, and many have proven quite effective – although they also have side effects. All in all, I am relieved to find that what I suffer from is so common. Hopefully by working on the puzzles in the newspaper and physical exercise will help lessen the severity of memory loss. At least I know I am not alone.

Since I got back from Maine, I have had energy and have actually been productive. I guess I am getting used to Thierry being gone. He actually is on his way home having survived the non-event hurricane. Friends will join him this Friday for the overnight portion of his trip south. It has been a good week, and my weeks will be even better when Thierry gets home!

No Regrets

2010-08-30T21:28:00.000-04:00

I heard an interview on NPR a few months back with Lee Kravitz, former editor of Parade Magazine. After losing his job he began to reflect on his life and decided to make amends for the wrongs he had committed in the past and reconnecting with people in his life. This included his family that he had ignored for years because of his job. One of the people he reconnected with was a college chum who he borrowed $600.00 from and never paid back. When he contacted the friend, the friend had forgotten all about the loan.

It caused me to reflect back on my own life to see where I may have some unfinished business that should be taken care of before its too late and to identify any “regrets” that may be eating away at my subconscious. In all honesty, I couldn’t come up with too much. Does that mean that I’ve lead a good life or a boring one?

I didn’t have that many close friends in high school, yet have maintained contact with several of them. There were a few working relationships that occasionally went sour, but I either have lost contact with those folks or am totally at ease that these either never developed into true friendships or went by the wayside.

My first marriage was a disaster, but I have long ago come to accept my poor decision to marry this person and the life we had together for two years as a learning experience. I really don’t regret this relationship although I am sorry for some of the pain that I caused my family because of it. The silver lining to this saga was my daughter, Lauren, my life’s joy.

There is one debt that remains unpaid. That was a $1,000 balance on a lawyer’s bill from the lawyer that handled my divorce. I was receiving $12.00 a week in child support from my ex, paying $240.00 a month in day-care, plus rent, and was making about $18,000 per year (is this justification enough?). There was no money left to pay that bill. I have been thinking that I should take the money and make a donation in her name to some charitable organization.

I also feel badly that I never really understood how I contributed to the atmosphere in our home during my second marriage until after my husband had passed. I took the time to work this out and truly believe I did what I could at the time, and came to terms with my inability to handle things differently. I try very hard not to practice passive-aggressive behavior now, and believe that I am not repeating all of the same mistakes I made in those years.

Some folks suffer regrets over luxury-type things that one wishes they should have – or things they should have done, like buying that Porsche or traveling to some distant place, going skydiving or some other exotic adventure. I never had the desire to do anything exotic (would love to have had a little black Carrera), but did want to get to Italy, which I did. Thierry and I will be visiting the Grand Canyon by rail in November, and we will continue to look at the list of places we’d like to see while I still can. But in all honesty, I will not be sad when reflecting on my life that I never got to see some of these places. In the grand scheme of things, these things are not important.

So, is having few regrets due to living a boring life, a good life, or just learning how to deal with and accept those things that we did in the past, and putting them in proper perspective?

I returned home from Maine on Wednesday and got right back into my throne at the infusion center on Thursday. It took a wallop out of me, but I have bounced back today and took advantage of my renewed energy level and got some stuff done. I go for scans on the 11th, and we’ll see where things stand and hopefully identify some of the pains I have been feeling.

It’s been a good day, and I can honestly say, I have no regrets, and just a little bit of business to take care of.

Concentrate on the Good Things

2010-08-19T15:49:00.000-04:00

We have had a great week exploring the “Down East” coast of Maine. The weather has been very good this year in Maine (the best in 10 years we’ve been told). We have done only a little sailing the last few days due to light winds, and managed to make way under some pretty heavy fog. Today we are in Rockland and although there was a lot of fog out in the bay, the weather inland is spectacular.

I am on my third book, The Constant Gardener, which has turned out to be a good read. I saw the movie years ago, but don’t remember the ending so the book remains a mystery to me.

This past week I have been quite pensive. I’ve had pains in various parts of my body, mostly around the middle and in my back. I have been working hard at trying not to think about them and what they could be. I concentrate on the scenery, or what is playing on the radio, or try to concentrate fully on my book. It works most of the time. So, rather than spend time writing about my pains, I will write about what makes me happy.

Flowers: especially in the winter when everything is so dreary outside. I always cheer up and smile when I look at a vase holding a colorful bouquet. The more variety the better, although I do like a vase overstuffed with just tulips or a bunch of sunflowers.

Maine: Relaxes me and continues to amaze me in its beauty. I really think I could spend the whole summer here.

Lauren: Although she sometimes causes me worry, she is my sunshine. She is funny, pretty, good-hearted, quick-witted and kind.

Thierry: My rock. Even-tempered, funny, and smart; I find peace when my head is on his shoulder. I will miss him when I go home next week without him.

My parents: Yes, at this stage of their lives they can be frustrating, but I never tire hearing my dad tell stories, and nothing feels as good as hearing them tell me that they love me – a phenomena that only occurred in their old age.

My sisters: Who anchor me and are there to support me when things are bleak.

My friends: So many beautiful, intelligent, witty and talented women (and men) that share our lives.

A Grey Goose Martini: Which I allow myself every now and then, mostly on off-chemo weeks. They never tasted as good as they do now.

Hot peppers from Dad's garden: Aside from being a great addition to almost any dish, we have had more laughs over situations arising from those peppers!

A really good pastry: I’ve pretty much lost my taste for chocolate, but love a good croissant or fruit tart. I guess it’s the combination of fat, white flower and sugar that does it! Things I haven’t allowed myself in a long time!

Spaghetti and meatballs: Still my favorite meal, especially when Lauren makes it. (Sorry Jean, I haven’t had yours yet!)

Email: A great way to communicate, along with texting!

A good book: I can be entertained for hours with a good book. Fiction in particular can take me places where I don’t go on my own.

There are probably more things I could add to the list, but these jump out at me at the moment. Plus it would probably get monotonous for my dear readers. I’ll continue to concentrate on the good things and being in the present – and with a little luck, my weeks will continue to be as good as this one.

A Maine Story

2010-08-15T10:03:00.001-04:00

It is Saturday night, August 14th, and we just arrived back on Curlew after having drinks and dinner at the Islesford Dock Restaurant on Little Cranberry Island, Maine. (See Curlew’s blog if you are interested in hearing about where we’ve been the last week.) I just hung up the phone after talking with my parents who sound amazingly good and who were very chatty.

We were here several years ago, and it is interesting to see the huge houses that grace the shoreline of what once seemed like a remote, traditional Maine Island; inhabited in the summer by a few folks from away, lobstermen, and during the winter, by a handful of die-hards who manage to brave the weather and remoteness of the island.

Little Cranberry is to the south of Mount Desert Island and close to South West and North East Harbors, both on Mount Desert, but very popular and wealthy if you judge the real estate populated by the summer visitors and the boats that are produced here: Hinckley out of South West and Morris yachts out of North East. It is unfortunate that these islands are becoming places for the rich, displacing the locals who have lived here for dozens of years but can no longer afford the taxes which rise along with the million dollar homes.

Tonight, while dining at the bar of the Islesford Dock, we heard a story of a man who purchased several acres of property some 30 years ago from a woman who happened to take a liking to him, and built a house. According to our storyteller, she sold it for some ridiculously low price at the time. I can’t help but imagine what it is worth now, let alone hearing something like that happening today.

On our way back to the boat, we were guided by a crisp, crescent moon, accompanied by Venus gleaming brightly to its right. When I am here I am reminded of the many years we spent in the Adirondack Mountains. There you could see the Milky Way in all its splendor; a mass of stars so congested that they looked like a malted shake. A sight like this you just don’t see in the city or its surrounding suburbs.

This morning, before we left our last anchorage, we watched the scenery morph dramatically as the tide, which dropped some 15 feet, exposed the rocks and plant life that lay hidden upon our arrival. Thierry spotted two sets of seals sunning on the rocks and two swimming in the water, along with a loon and other birds. Maine always offers up something entirely new and wonderful.

Tonight I outdid myself. I had a Grey Goose Martini before dinner, along with a terrific mussel appetizer which Thierry and I shared. We then had halibut for dinner with a bottle of Sangiovese, both of which were very good! I haven’t drunk that much in a long time and I have to tell you, it feels pretty good. We’ll see how it all shakes out tomorrow!

Speaking of tomorrow, we may go back to North East Harbor to do some laundry and buy some food as we are out of fresh vegetables; or we may just decide to hang out and take it easy. Then we will make our way southwest to Rockland where we will meet our friends, the Davisons, for dinner and pick up Lauren and Michael who will join us for a few days. I will ride back with them to Philadelphia the week after.

Although I would love to chatter about something I’ve thought about this whole trip (regrets; you might ask where that came from!), I will save that for another blog. It has been a truly wonderful week, and a special evening. No regrets here!

Thoughts

2010-08-09T13:11:00.003-04:00

It’s a rainy Monday in South West Harbor Maine (one of my favorite places), but that hasn’t dampened our spirits and excitement over the few plans we have made since I arrived on Friday. My flight to Bangor from Philadelphia was uneventful and even arrived a few minutes early. My taxi was waiting for me and we made the trip to Belfast in about 45 minutes. Thierry was at the dock, looking dapper and very tan!

I won’t go into all that we’ve done since my arrival – I’ll leave that for you to read on Thierry’s blog. Suffice it to say, we’ve had two beautiful days of sailing and are looking forward to a great week ahead.

For a few months now I have been wanting to write about a specific topic, but other ideas always came to the surface. Part of the problem is getting started – I guess I should just sit down and write when the thought first pops in my head – it would make things a lot easier.

A young woman I know told me a while back that she was leaving the area to move in with her partner, who happened to be a woman. I think maybe she was a little apprehensive as to what my reaction would be. I actually was pleased that she felt she could share this news with me.

I personally believe people should be able to live their own lives and be in relationships with whomever they choose, as long as they are loving, healthy relationships. I don’t know why I am still shocked when I hear blatant comments being made about blacks, gays and other groups. I guess I figure that we are a more enlightened, educated and mature society than we really are.

In some 34 states, employers have the right to fire gay employees for no reason – other than they are gay! I’ll stay away from the subject of “don’t ask, don’t tell”. People have been screaming that by allowing gays to marry in California, the sanctity of marriage is going to be ruined. Considering the high divorce rate in this country, I would think that the last thing to threaten the tradition is gayness! I know several gay couples that have truly loving, caring relationships that have endured for many years.

Why are people so threatened by something as innocuous as a same sex relationship? Is it the result of centuries of repression by religious leaders who perhaps felt the need to suppress homosexuals just like they did with females over the centuries, forbidding them to learn to read/write and participate in religion and government? Or maybe is it fear? Fear of what though; this eludes me.

We are who we are. It is what we bring to the table that defines our worth. To those who spout their Christian virtues I say start thinking like Christ, be giving, forgiving and welcome all of humanity into your hearts.

It’s a great day in Maine (even though they defeated same sex unions in 2009 – but only by a few percentage points!).

What To Do

2010-08-02T21:36:00.000-04:00

Thierry’s been gone for two weeks now (although it feels longer), and I really thought I would be extremely productive in his absence. To the contrary, I find I have become somewhat of a slug, spending a lot of time thinking about what I should be doing, could be doing, or what I should want to be doing, and actually doing very little. When Thierry’s around I am at least motivated to appear busy!

What I should be doing is to continue the clean out process I haven’t really made a dent in for a few weeks. I also have a new computer which needs to be set up – but there again, it sits on the sidelines waiting for my attention. Then there’s the cookbook project which I haven’t even thought about since I wrote it down on a yellow sticky and posted it on my computer monitor.

The things I could be doing or should want to be doing are a little less clear. I mean, when you get the talk (about now is the time to do the things you always wanted), isn’t that when you make your list and start charging ahead? I’ve been thinking about the list for a while. Yes, I want to travel, but that takes planning, money and time. Travel needs to fit in with weekly chemo and trips to Maine. We are and will continue to travel, but what about the in-between time?

We go to plenty of concerts and movies, visit with family (although maybe not enough), and spend time with friends. There are only so many concerts and movies to go see and hear, and friends have jobs and friends and families of their own. Filling up evenings isn’t as difficult as filling up the days.

I have thought about getting more work. This takes effort – like networking and going to meetings in which you are really not interested. Some days I know I am just not physically up for that, and then what do I do, wear my wig or go au naturelle? Would someone want to contract with a chemo-patient? Also, having networked for over ten years, the idea of doing it again makes me feel ill. I’ve considered a part-time job, but that limits our potential travel plans.

I have some thoughts on how to get more work without being “out there”, and I’ve been thinking a lot about volunteering somewhere. This idea sounds most appealing. Of all the volunteer work I’ve done or work for pay with the underserved population, the most satisfaction I received was when I worked with boys between the ages of 13-18 with their homework after school. They really appreciated the time, and I loved seeing their interest and progress. I really felt useful.

This state of inertia is new to me. I was always the type of person that thrived when busy and always found ways to be even busier. I not only joined organizations but got elected on their boards. I participated in events and planning, constantly on the go. I knew tons of people and they knew me, but that just doesn’t interest me anymore. On the other hand spending my days being unproductive is frightening. I don’t think I am depressed, but I certainly am not motivated. Self-motivation is always difficult, but is much easier when you have a goal. Sometimes I feel like I am in a state of limbo; waiting for news. Just what news, I don’t know, but I do know I can waist a lot of time waiting. I guess it goes back to how you want your obituary to read, and I don’t want mine to say that she had an exciting life until the end, when she just sat back and let it pass her by.

The day is only half over, and I’ve actually done some work, went to the gym, wrote my blog, and am going out to do some errands. It has been a good and relatively productive day.

PS: Some of you have told me that you have started cleaning out closets, etc. When planning your clean-out, don’t forget your kitchen cabinets and pantry. I was surprised to see that a bottle of Rose’s Lime Juice actually has a shelf life – what a weird color brown the liquid became! So did the open bottle in the fridge. Can’t even remember the last time I used it – or where I moved it from.

Catching Up

2010-07-25T12:40:00.000-04:00

Well, I debated whether I should iron clothes, slice the cabbage to get ready for tomorrow’s barbecue or sit down to write my blog. After thinking about all I need to do tomorrow, I figured I’d better get to it now otherwise another week would slip by without my writing.

It has been a busy two weeks since we brought the boat up from Baltimore. Thierry started right in on preparing the boat for her journey north. I was busy with laundry, shopping and catching up on my paperwork.

I had thought about writing a couple of times but had a few dark days, thinking about illness and I think, dreading the thought of Thierry going away. These thoughts also made me a bit grouchy, but, I managed to put all that out of my mind and we had a busy and fun two weeks.

While we were occupied with our own things during the day, we went out at night; to see the movie, The Girl Who Played With Fire (based on Steig Larson’s book), and then the next night, to the Blarney Pub to hear our neighbor play. We had a big crowd and a lot of fun.

We had got it into our heads that since we are spending a lot more time at the condo we should have some plants; in particular, on our balcony. Many of our neighbors have planters, flower boxes, and furniture, making things look very homey. Our balcony gets sun in the morning and a lot of wind. Some time ago I had mentioned our thoughts to my friend, Judy, who lives in Maryland and is a huge plant person. She said she would be interested in helping me with this project and she spent a lot of time researching plants and planters that would require little care, withstand the elements and survive the winter on our balcony.

Judy came up on Friday (the 16th) and she and I went to the Barnes Foundation to see the remainder of the exhibit before it moves to its new location in the city. For those of you who are not familiar with the Barnes, the “museum houses the world’s largest collection of French Impressionist, Post-Impressionist, and early Modern paintings,” with a large number of paintings by Cézanne, Renoir, Matisse, Seurat, Modigliani and Picasso to name a few. The museum is known for its historically restrictive practices, one of which is that you can only go if you have a reservation, in addition to only being open four days a week in the summer, less in winter. We had to chuckle when we entered the property and had to search for the entrance as there were no signs directing you from the parking lot.

The next day we went shopping for soil, stones, peat moss and plants. We decided on a Oriental Fountain Grass for the main focal point, framed by Rex Begonias. The greens, silver and purple leaves look great against the silver frame of the balcony and provide a very peaceful, calming effect when gazing onto the balcony from the living room.

On Friday night we had a gathering on Curlew. There were 15 of us and we pretty near depleted Curlew’s wine locker in addition to the bottles our guests brought. A good time was had by all.

We spent Sunday and Monday supplying the boat, and Thierry took off on Tuesday morning along with his crew, Tom and Barry. Be sure to click on the link to Curlew’s log to get an update on his adventures.

Since Thierry left, I have kept busy with work and housework. After two weeks of no real physical activity I am back to my gym routine. I panicked a bit when I heard that the FDA took Avastin off its approved list for breast cancer treatment. I saw my oncologist on Thursday, and she told me not to worry. I am not sure what that means, but I am hoping that my insurance provider doesn’t take it off their approved list.

I also asked my doctor about the status of my tumor cells that are housed somewhere in the hospital. I had heard that many women ask for their cells in the event that they may be used by researchers in the future. I would like my cells to be used in research, and possibly to be used to develop a drug that may put my cancer into remission. My doctor, who did not answer my question directly, seemed to indicate that the research she is involved with would be looking at cancers like mine. She assured me she has my back, and my front. Mmmmm, I think I need to push her on this a bit.

Today has been a rather quiet day, five loads of laundry done and my in-box is cleaned out and my bills are all scheduled for payment (pretty productive I guess). It’s been a good couple of weeks, but I miss Thierry and I am counting the days until my plane takes off for Bangor!

When the Children Become Responsible for Their Parents

2010-07-12T10:33:00.000-04:00

The weekend is just about over, and we are relaxing on Curlew and recovering from Holland’s loss of the World Cup to Spain; however, some of the folks in my family are very happy with this outcome!

Thierry came to the boat on Tuesday hoping to get some work done and to prepare for his trip to Maine, but the weather decided not to cooperate. It was extremely hot and humid and then the rain came; not conducive to varnish work. When I arrived yesterday (Saturday), the rain was sporadic, so we hunkered down below. Thierry was able to get a coat of varnish on the wood trim this morning, finishing just in time for us to meet my sister and her husband at a local sports bar to watch the game. We leave tomorrow for Philadelphia where Thierry will finish his preparations for his trip.

Due to my chemo schedule, I will not be sailing up with him. Two friends will help Thierry take the boat north. I will take a week off of treatment in August and join him for a few weeks.

As I’ve mentioned in past blogs, mom has been in the hospital and rehab twice in the last nine months; the first time with bronchitis and this last time, with a broken clavicle suffered after a fall she had in the kitchen at home. Since the winter, mom has been complaining that she doesn’t remember things and she has been in a lot of pain from a torn rotator cuff. The rotator cuff really requires surgery, but due to the difficult nature of this type of operation, it does not seem to be an option for mom at her age.

After mom’s fall, we all scurried to figure out how to make the home habitable for her as an extended stay in a rehab facility would ultimately be unaffordable for my parents. My sister went on Craig’s list and found a stair lift which my brother spent hours installing. A few years back, he had added bars to their bathtub/shower enclosure, along with a hand-held shower head. We asked for a portable toilet which can be placed over the bathroom toilet, providing support bars for the user. Fortunately mom had a hospital bed in a guest room that she acquired when her sister passed some years ago.

For several years, my sisters and I have been worried about how my parents are going to continue living by themselves in their two-story house (with a basement). Dad has some difficulty seeing and has a very bad knee. Mom tends to fall – she just kind of keels over. Their laundry is in the basement as is their food storage area (cantina, or condine as Thierry and I call it). When mom was in the hospital during the winter I talked with them about getting an alert system, one that requires them to wear a device that can be activated if they need emergency assistance. Dad immediately rejected the idea, but now mom is okay about having one. Dad says he takes a telephone with him when he goes out into the garden, but I don’t think he has it with him all the time, like when he is in the basement.

Trying to get them to talk about moving is an impossible discussion, primarily because my dad absolutely does not want to move. Also, the cost of a senior facility can be prohibitive – but only if they both live another 5 years. They will both be 90 in September. Due to my mother’s illness, they finally gave up the idea of my mother continuing to drive – but for a long time, that also was a discussion we couldn’t have. We have been talking about cleaning out their basement which is cluttered with stuff collected over 50 years and is now old, broken, dirty and unused. Dad won’t hear of it!

I’ve heard experts on the radio talk about how we children should have discussions with our parents about their well-being and how “we” can make decisions together in order to help them maintain a safe and healthy life-style. These experts haven’t dealt with my parents. At what point do they (our parents) - or we for that matter (when we reach their age) - shut out the noise and suggestions from those around us and insist that the status quo is the right decision? Good grief this sounds like me at 17! But aren’t adults supposed to know better?

It seems that at some point, when we reach a certain age, we become almost incorrigible, cranky and more determined to have our own way. A friend said that our parents don’t consider the impact these types of decisions have on their children. True, and they really don’t care. Perhaps they make these decisions to reinforce the fact that they are still in control of their lives and of their own minds. And how much should we push our parents to make these decisions. Like a child, experience is the best teacher, but falling at 89 is a lot more serious than falling when you are 17 – there is a good chance you won’t get up. But then, even if mom was in a senior community, she could still fall and dad would be in the same position of having to send for help.

I am rambling. I am concerned and I feel a bit guilty that my parents can’t live with me (and wouldn’t want to), and feel guilty that I am not there more for them. But maybe elder-proofing their home and enabling them to stay there longer is the nicest thing we can do for them.

I’d welcome any input to this writing from all readers, especially my senior readers. If you have trouble posting, email me at iwanaberma@gmail.com and I will post your comments to the blog with your permission.

Who knows what the future holds. It’s been a good day and a great week.

The Good Life

2010-07-05T21:31:00.001-04:00

Last Friday I was thinking of writing a blog about things that piss me off. Perhaps this all came to mind on Thursday when the nurse tried to give me a drug which I was not scheduled to receive according to the last conversation I had with my doctor a week prior. My nurse patiently tried to make some sense out of my file, and was finally able to get things clarified with the doctor. Then there followed a series of minor things that got me thinking the subject would make a good blog topic.

Luckily it was a busy weekend and my writing was delayed. Over the weekend I spent time with friends and yesterday and today received several emails that made me smile and left me feeling very grateful for the life I have and the people I know. This pushed all the sour thoughts out of my mind.

The weekend started on an up note when we went with friends to “First Friday”. In our neighborhood, all the art galleries and some of the small shops open their doors and display new artwork, with many offering snacks, soft drinks and wine on the first Friday of the month. The streets are filled with young artists displaying their wares (some good, some not so) and occasionally there are street performers doing magic tricks, walking on stilts or singing and playing instruments.

A group of us ventured out and visited some of our favorite galleries. The girls naturally were drawn to the jewelry vendors, among others. I had declared that I was looking for big earrings as someone had suggested that they might look good with my dramatically short and white hairdo. I was coaxed into a pair of dangling metal orbs which I modeled on Saturday and they were a great success.

Saturday was the first day of the 4th of July weekend, a big day of celebration in the US. The city puts on a terrific fireworks display which we can view from our condo, so we invited friends and family to join us for an evening of food, drink and celebration. The fireworks were wonderful and the food was good, but nothing compared to the spontaneous concert that we were given by two of my neighbors (and friends). Barry walked in with his guitar around 9:00 p.m. and immediately changed the tempo of the party. Tom was coerced into bringing up his fiddle and mandolin. The two of them started to jam and the party rocked. Tom actually plays with a band at a local bar – we all are planning to go see him play in a few weeks. Be sure to check out the video Thierry posted on YouTube http://www.youtube.com/watch?v=EojwcwnZAcQ.

Sunday was a slow day, but we did go for a walk in the 98 degree heat to have a beer with friends at a little pub and later had Chinese take-out for dinner. Today, Monday, we celebrated Mike’s birthday (long overdue, it was the 25th of June) and had everyone over at mom and dad’s house for stuffed shells – one of Mike’s favorites – and chicken cutlets. Oh, and an amazing yellow-cake with chocolate icing.

Occasionally Lauren and I will go on a negative rant about something (or someone) that annoys us. Whenever one of us starts this type of diatribe, the listener will remind the complainer to focus on the good things. Letting off steam is necessary and sometimes what you need to do in the moment, but focusing on the fun things that you do and the friends that you have is the best medicine in the long run.

It has been a great week.

The Recipe Box

2010-06-28T09:24:00.000-04:00

Recently Thierry and I have been discussing the cleaning up that we need to do around the house. He is particularly bothered by the clutter, although many would say our house is NOT cluttered. Granted, the office is a little overgrown with books and the papers on my desk. I finally brought two bags of my old books to the used book store down the street. The library has a stack or two of books that need to be placed on the shelves and the old printer is sitting on the floor waiting to be disposed of. I tend to leave coupons and odd pieces of mail around the house, mainly because I don’t know where to put them. I always had a junk drawer in my other houses where I could stash things, but not here.

We have a glass coffee table in the living room and we each have a pile of reading on the lower shelf and I recently added a file folder full of recipes clipped from magazines and downloaded from the internet. Thierry noticed this new pile which I brought out from the office bookshelves where I keep my cookbooks. I had to add clippings from two Vegetarian Times magazines to the folder, which is still there days later as I keep telling myself now is the time to file the contents. I keep meaning to scan them and file them in my computer recipe file, but the whole process seems daunting: first figuring out how to use the scan function on the printer, then figuring out how to save and file them on the computer.

I routinely go through my stack of cut-out and photocopied recipes and tell myself someday I should try this one! A few I actually have tried and my favorites (used more than once) are in pretty bad shape, full of food stains and water spots. When I moved from my home of 19 years, I tossed or gave away many cookbooks that I really never used. I kept about 40 or so and added to them when I went through my vegetarian phase.

With the internet I rarely open my cookbooks anymore, but try to copy or download right into my recipe file those recipes that seem interesting. At this stage of my life I should be able to just create a meal gleaned from all of my past meals, but alas, my mind gets boggled when I try to whip up something spur of the moment. Now I take my little Netbook and put it up on the counter, do a search on the ingredients, locate a recipe and follow it on the screen while I am cooking. I am not totally incapable of being creative – I do add or subtract from a recipe as appropriate, but do depend on the author to pull together the main ingredients of a meal for me.

I don’t know how many recipes I’ve clipped over the years or how many I have actually tried or eventually just thrown away. I wonder if it is genetic; clipping recipes, putting them away and rarely looking at them. My father did the same thing and so does my sister Jean. My uncle collected cookbooks and had video tapes of all types of cooking shows. He was a gourmet cook, and most likely didn’t need a recipe for anything – but this was his hobby and joy.

This week’s goal is to do something with these recipes – toss or save – and clean up yet another pile of clutter. As it goes, I made dinner at mom’s tonight and used a recipe that was clipped from some magazine. Maybe Thierry will be in for a real treat this week!

By the way, mom is out of rehab although still recovering from her fall. She is doing quite well, and Jean has been there to help her get reacclimated to her home and daily routine. Home therapy will start this week.

I saw my doctor on Thursday and she informed me that I will no longer be given the carboplatin due to the reaction I had a few weeks prior. She said that she had been thinking of discontinuing this chemo anyway, since my scans were so good. Hopefully things will continue to improve.

It has been a very busy and wonderful week and weekend.

What's a Friend to Do?

2010-06-15T22:34:00.002-04:00

Well, I thought I’d have this posted days ago, but when we left on Friday to go to the boat I left my netbook in the car! It doesn’t matter if I make a list, I still forget things. The last time I went down to Baltimore I had a list but left two things off which I thought were minor and I’d remember them (my neupogen syringes and the bolts to the cockpit table that Thierry had varnished and that I had already put in the car). This time I did not have a list. The only thing I forgot from home was the container with my vitamin supplements. The computer, which I remembered to remove from the house, was in the backseat of the car (we drove from Havertown to Baltimore with Lauren and Mike in their car). So.......

At any rate, I probably would not have written as we were busy with Lauren and Mike who decided to spend Lauren’s birthday (the 13th of June) and their one year anniversary with us on Curlew. We had a terrific weekend. They are such fun to be with. We got to sail three out of four days and had a great evening in Annapolis. I actually got drunk (haven’t been drinking much) and had a slight hangover on Monday. Have to be sure I don’t do that again!

When I got back to town I had a conversation with a friend of mine who told me some news about a personal issue she was struggling with. Have you ever been in a situation where a friend shares something that is severely impacting their life, the subject of which you have some definite opinions on; opinions so strong that you fear if you share them you may injure the friendship?

This is the second time I have been in this position. The first time was many, many years ago when a close friend was involved in a situation that was clearly bad for her. She would share her angst with me and I know I voiced my opinions because I distinctly remember her commenting at the time that she just needed me to listen and not to judge or make comments. I always felt I let her down by not being a better friend and just listening. You would think that I learned my lesson, but it happened yet again.

But how do you stand by and see someone make what you think is not the best decision and not say something, if you are truly a friend? When do you just keep your mouth shut and listen? One complaint a lot of women have with men is that men always want to solve problems. I always wanted to be listened to by my husband (to vent), not told what to do. Seems I do the same thing, feel I have to fix things for others.

Perhaps one answer is to listen, carefully, then question. That is ask questions that will (may) help the person come to their own conclusion. I fail miserably at this, at the most important times. Maybe this is one of the life lessons that I need to master. I plan to work on it!

It was a struggle this morning getting to the gym – perhaps I’m still suffering from the weekend. I was literally lying on the bed in my gym clothes having a conversation with myself over whether or not to go. But I kicked it in gear, got to the gym then later to the burbs to take Dad over to see Mom at the rehab facility. Yes, once again Mom is being rehabbed as she took a spill last week and broke her clavicle. Other than the pain from the break, she is really doing pretty well.

It was truly a great weekend and a good day, even tho I’m still struggling with lessons I must learn.

Creating a Few Memories

2010-06-06T22:01:00.002-04:00

It’s a lazy Sunday afternoon, and I am just sitting down to write for a few minutes before company comes for dinner - now that I have finally decided what to write about. Sometimes I am at a loss for a topic, other times, like now, there are a few things on my mind. This is good, so perhaps I’ll write earlier next week.

We have done some fun things over the past three weeks or so, so I thought I’d write about them. They are light and I have good pictures to back up the stories. I think pictures add a bit of punch to the blog and certainly bring things to life.

About three weeks ago now, Thierry and I went over to my parents’ house to help Dad plant his garden. My sister Ann and her husband Juan had been there the day before and planted the tomatoes. We went to plant peppers and Thierry hoed the other beds. Juan came again to plant while Ann took Mom to the doctor. We would have planted more, but Dad misplaced a batch of seeds which we have since sourced and hope to plant this coming week. At the same time Thierry will stake the tomato plants.

My father, at 89 years of age with limited sight and walking ability, still likes to have his garden. He does go out almost every day to water and to weed, and even plants seeds. The garden, which is still sizeable, has been active I think since the time my parents moved into the house in 1953. It used to be much bigger, and we’d always complain that the spot was better suited to a swimming pool. Dad didn’t fall for that one. My brother used to help in the garden when he was little (and I am sure bitterly complained). I don’t remember doing much in the garden other than picking vegetables and later selling them to the neighbors. Dad used to grow radishes, onions, herbs, zucchini, eggplant, tomatoes, two types of peppers, several types of lettuce, beets, swiss chard, cucumbers, and two types of string beans. The list is a little shorter today, and so is the volume.

Juan calls this the Taraborelli Community Garden because it has turned into a group project. As much as I would like to see my parents give up their house at this stage, I have to admit that going to help them with their garden has added a new dimension to our family life. Dad stands over all of us and provides explicit instructions; while we all kind of chuckle under our breaths yet work obediently to get the job done – right. We all benefit from the effort when it is time to harvest.

I have come to realize that I should relish this little bit of time that I spend with my Dad, Thierry, Ann and Juan, because one day the garden will be gone, and we’ll have these wonderful memories to look back on.

Thierry and I took Curlew out for Memorial Day weekend. This is the first time I have been on the boat in about 8 months. It was another hot, humid weekend and I really thought there would be no wind, but we were pleasantly surprised. We left the marina on Saturday and headed across the bay to Swan Creek which is near Rock Hall. We were able to sail almost the entire way, from the mouth of the Patapsco River to the entrance of the creek. We ended up sailing 3 out of the 4 days we were on the water.

We met up with our friends Sylvia and Tom, who have a boat at a marina near the anchorage and had dinner in Rock Hall. I realized I hadn’t been to Rock Hall in close to 15 years. The town hasn’t changed too much – although a Walgreens has been added. Still many of the same stores and restaurants remain.

We stayed put on Sunday and friends of ours, Scott and Sue, came along with their boat and rafted with us. We had a really pleasant night and the next day, Scott helped hoist Thierry up the mast to do some repairs to the genoa furler. Here it was Sue’s birthday, and we infringed on her celebration once again by asking them for help. It was May 31st two years ago exactly when Thierry and I were in Washington DC on Curlew and I had to call Scott to come lend me a hand.

The night prior both Thierry and I were taken by ambulance to Georgetown Hospital, he with a tightness in his chest, me with a high fever and diarrhea and extremely low blood pressure. We must have been a sight when we staggered into the marina office to ask for assistance. The next morning, they let me out of the hospital but wanted to keep Thierry in for observation.

The forecast that day was for severe thunderstorms with a threat of tornados. Here we were anchored out in the middle of the Washington Channel anchorage. I was still feeling quite ill and weak, and I have never experienced being on board by myself, let alone in a storm. Not knowing what to do I called sailor friends who suggested I call Scott – a very experienced sailor – who lives in Columbia, not horribly far from DC. When I spoke to him he told me that they didn’t really have plans for the day other than to go to a movie to celebrate Sue’s birthday. They both came down and stayed with me while the winds kicked up. In the meantime, Thierry called and said he had been released. Scott picked up Thierry in the dinghy and we all waited out some strong winds and a thunderstorm. In two years we’ll have to think up another reason to get Scott and Sue to come help us on Sue’s birthday, just to keep the tradition going.

Yesterday, Thierry, Lauren, Mike and I went to a local vineyard for a wine tasting. Our favorite wine expert, Robert who does our family wine tasting each year, organized a luncheon and tour of the vineyards of Penns Woods Winery. The owner is an Italian from Abruzzi (same region as my parents), and he spent a good deal of time talking about his efforts to get the vineyard back to producing good grapes and the threats and challenges he faces. We had a nice lunch, sampled wonderful wines, bought a few as well, and spent a great afternoon with “the kids.”

I had a light chemo week as they decided not to give me the carboplatin in my last treatment. The doctor was out of town, so I will find out this week what the next steps will be after my reaction to the drug the previous Thursday.

So, all in all, with the light chemo, the great wine and wonderful time spent with family and friends, it has been a great few weeks! Tune in for the serious stuff later in the week!

The Results Are In

2010-05-28T22:36:00.003-04:00

I am writing this week’s blog spread out on the settee on Curlew, a spot I haven’t held in some 8 months. I’ve missed this; the boat, the water, Baltimore. As soon as I spend a few minutes on the water I feel calmer, more relaxed. Tomorrow we hope to head out - to where, we’re not sure. We’ll figure that out once we see what direction the wind is blowing (if it is blowing…), and go from there.

Okay, so the big news. I saw my doctor on Thursday. Mind you, I haven’t seen the reports myself, hence, I don’t have all the details. She told me that according to the report, all tumors are gone except one. The tumor in the lymph node is not there, nor is the one in the fourth rib. One of the tests had shown a spot on the lung, which they did not think was cancerous – this is gone. The tumor on the hip is gone, but that did not show on the last test either. There also was a spot on the femur – which they did not officially declare a tumor – that also has disappeared and again, this was not on the last set of scans. The July 2009 report stated that there were innumerable tumors in the liver. This report indicates there is one tumor that is about 2.4 centimeters. This tumor had been originally 6.7 centimeters.

A marvelous report! Everyone is really excited for me and yes, I am very happy about the news. I didn’t realize how nervous I was about all this until I was sitting in the exam room and I started to shake. After I heard the news, I immediately became stoic. You see, we still have a way to go and this cancer is so unpredictable and aggressive, that I have to remember that things can change in a second. This is when I have to remind myself to live in the moment, one day, one hour, one minute at a time, otherwise if the news comes back not so good one day, I may truly crumble. They say that today they don’t talk about curing cancer; it is all about getting it to stop growing. Many women live many years with breast cancer. You just don’t know who are going to be the lucky ones.

What does all of this mean in my treatment? Not much, at least not now. Although the doctor did not allude to a future, she made it clear I have to continue with my current treatment and reminded me of this cancer’s unpredictability. I figure we’ll see what happens with the next set of tests in three months. I can take an occasional break from treatment – but that was not defined either in terms of how often or how many I could skip. I am planning to get a second opinion to determine if I am doing the right things at this stage. I did ask the doctor if they could cut out or nuke the liver tumor. She thought about it and said it was a possibility, but it would mean stopping the chemo. She doesn't think that is a good idea.

Although the day started out on a fantastic note, things kind of went haywire from there. About six months ago I had a reaction to one of the chemo drugs – the carboplatin. Since that time, I am given an extra shot of Benadryl and another dose of steroids prior to receiving the drug. This time the doctor increased the carboplatin dosage because my weight is up (ugh!) and because my renal function has improved (actually all my organs are functioning normally). I did not want them to do this since I felt I was responding to the current treatment and I am concerned about worsening the neuropathy. Anyway the PA (physician's assistant) came out fighting and stating how it is important to match the drug to the weight, etc. so it reaches its maximum effectiveness, blah, blah, blah, so I said fine!

Well, I don’t know if it was because of the increased dose, but after eight minutes of receiving the infusion (the total time to administer this drug is one hour), I felt my mouth, throat and sinuses begin to tingle. Then I felt my face flush. My sister Ann and her husband Juan were there with me (Juan receiving his infusion that day), and I asked them if my face was red. They looked and said yeah, a little. I called the nurse, by the time she came my face was bright red – my ears were actually scarlet! They immediately stopped the infusion and began a saline drip. After some discussion, they gave me another shot of Benadryl and another dose of steroids. After about 20 minutes things returned to normal. They began to administer the carboplatin again.

Things went along smoothly, for a while. When there was only about an inch remaining in the bag I noticed my legs started to itch, then my arms. I pulled up my shirt and noticed a rash beginning to appear – same on my legs. Before I new it my hands turned deep red. I had already called the nurse and once again, they stopped the treatment and started the saline drip. Soon the little red spots that appeared on my arms started to connect themselves, and I now looked like I was wearing a pair of scarlet elbow-length red gloves.

The PA and pharmacist had a bit of a row over what to give me next. The upshot was another shot of Benadryl. Now I have had 100mg of the stuff… Although I was wide awake, thanks to the 50mg of steroids, I found I had difficulty forming sentences – so when my sister Jean called in the middle of all this she insisted that she come and pick me up to take me home. I finally agreed. Fortunately I had a great nurse that day, Cheryl. She insisted they keep me (after the PA had said to send me home), and got me another bag of saline. The color finally disappeared. All that remains today is a little puffiness in the ankles and fingers. We left the hospital at 5:55 pm; I had arrived there that morning at 7:55.

Lauren had stayed over the night before my treatment so she could go with me to the doctor. We got up early and went to Mrs. Kay’s for breakfast. She got to experience this wonderful eat-at-the counter restaurant, with all the locals who show up there faithfully every morning. She was so thrilled with the doctors report, that as soon as we got back to my throne room she texted all her friends. What a kid!

Jean drove me home and hung out for a while. We had meatloaf and mashed potatoes for dinner that Ann had brought for me earlier that day. I have the most amazing family! It was a great ending to a rather emotional day.

PS: As I told a friend the other day, now is NOT the time to uncross your fingers and toes, nor is it time to stop your prayers! We’ve got another tumor to go, and there are drugs in the pipeline that we got to get to market. They may be my future – as well as the future for many others!

Am I becoming one of those....?

2010-05-24T22:00:00.003-04:00

I almost became one of those. Well I kinda am one of those. The folks I may have criticized in a past blog: the ones that are constantly on their cell phones, either chatting or texting.

You see, I had to get a new cell phone after we returned from our trip to Italy. My phone had died over a month before, but Verizon wouldn’t let me get a phone a month early without me giving up a $50.00 cash back gift and charging me $20 or so as a penalty. Thierry met me at the store, and we decided to switch to a family plan and reduce my minutes (which initially made me quite nervous but has proven not to be a problem so far). Given that I had to make a 2-year commitment, I was concerned about buying a phone that didn’t have internet access and would be immediately outdated. This meant I needed a smart phone.

Prior to going to the Verizon store, we researched phones on-line, and checked the user reviews. Blackberries got high marks and I was pretty convinced of the make and style of phone I wanted. Naturally, when I got to the store I chose something different. I did select a Blackberry, but picked out one that has a touch screen and required that I purchase a $29.99 a month plan to access the Internet. This was not a shock as I had already figured that by reducing my minutes, I could add the extra cost without incurring additional expense (well, it is costing $10 more but that didn’t seem onerous). I have unlimited internet and texting ability with this plan.

The phone was remarkably easy to use. I didn’t have to look at the “how to” manual for several days (actually didn’t have the time). My son-in-law (Mike) helped me out with a few features. He has an older version of the same phone. What I wasn’t ready for was how addicting it would become. My email is delivered to my cell phone! OMG! Instant access to email AND web browsing! And, when someone sends me an email with an attachment, I can actually open it and read it!

When I first got the phone, whenever I saw the little light flashing in the corner I had to pick it up and read the emails or texts. Regardless of where I was, I was always looking at my phone; in a restaurant, walking out of the Met, walking down the street, sitting at a table sipping a drink. Worst of all, I found myself looking at it while driving! Yes, just as bad as driving drunk, so I immediately told myself this was not good. Lauren is reading this and she is probably thinking, “yeah mom, after constantly nagging me about looking at my emails and using my phone while driving…..”

I heard something on NPR the other day about teenagers using cell phones and texting while driving. One of the speakers talked about how parent’s behavior influences their children’s behavior and actions, and how parents are just as bad as kids in using cell phones at inappropriate times. I felt like they were talking about me (ha, maybe I learned it from Lauren). Now I deliberately try to leave the phone in my bag, at home when not necessary to carry, or I try very hard to just ignore it. I really am afraid of having an accident because of a cell phone – once I actually swerved while trying to look up a contact. How dumb was that?! Dumb, yes, but it also scared the heck out of me.

I have to admit that I love texting. I find that I really don’t like speaking on the phone for long stretches. A lot of cleaning or computing or reading can be accomplished during time spent on the phone. It also is impolite to not “listen” to the person you are on the phone with. When you are with a person, albeit face-to-face or on the phone, you should be present in the conversation. I tend to get impatient after a while and begin to fiddle about. When you text you say what you need to say in one line and then can sit back and wait for a reply. A lot gets accomplished with few words.

I like my new phone. I feel like I have made it to the next level in technology. Now all I have to do is learn how to control myself and use it smartly.

I am including pictures taken during our recent weekend in New York. We had perfect weather and a great time. We arrived on Friday and rented a rowboat in Central Park, then had drinks at what used to be Tavern on the Green. Thierry really enjoyed the opera on Saturday, I really loved the Met. My friend Ann joined us Saturday evening, we had a good dinner and on Sunday we all went to the Whitney Museum. I am ready to go back.

I got through the dreaded scans okay, but my vein hurt until yesterday (from Tuesday). They have to inject a substance which provides a contrast between images while I am being scanned. I’ll find out the results on Thursday – yes I am nervous as hell! Keep your fingers crossed!

It has been another busy and wonderful week.

PS: The pictures were taken with my new cell phone!

Wrapping Up

2010-05-14T10:44:00.000-04:00

I realized I left a few items open regarding our Italy trip so I thought I would dedicate this blog to wrapping up a few odds and ends. Also we are on our way to NYC and I am NOT bringing my netbook and don’t want to post too late in the week.

Thierry’s suitcase did arrive intact from Italy. It appeared that the case had been searched; however, all bottles arrived safely – we were most concerned about the Jenever (Dutch Gin), which has since been refrigerated and sipped!

We learned on the last day of our trip why the bread in Tuscany is rather tasteless. During the 1500’s Tuscany was under Papal rule. One of the popes decided to raise taxes (probably to build a cathedral as a monument to his reign), and taxed salt. The residents protested by omitting salt from the bread – this was supposedly one of the first major protests of its type. To this day, they make bread without salt. The trick to eating the bread is to first salt the bread, then coat it with olive oil.

We had a wonderful Mother’s Day. My sister and Lauren took charge of the festivities. Jean cooked chicken cutlets, which were wonderful; mushrooms in oil, garlic and hot peppers, which are to die for and must be eaten with good crusty bread, and asparagus. Lauren brought these outrageous pastries from a French bakery, each one better than the next. We ended up with 18 people, some of us eating in the living room. Things went very smoothly and appeared very organized. For some reason (here is my control freak coming out), I was nervous in the days leading up to the day as all I could think about was where everyone was going to sit. Normally we would use the back porch, but we had put the screens in and the weather had turned cold and rainy.

While writing my last blog about Mother’s Day, I felt something was lacking and it has weighed on my mind ever since. And that is this. There is a lot of angst that goes with motherhood. Since we begin the journey with no experience, it is all trial and error. Along the way, we constantly question our decisions and judgment. Hopefully we realize we are helping to form these creatures into human beings; a task in itself which can be daunting and can’t be taken lightly.

Mother’s are usually the ones that get the phone calls from school, learn about the accidents, and take the brunt of the child’s reactions to authority. Mothers are the ones who arrange the schedules, worry about doctor appointments and entertaining the kids. We plan the parties, the meals and at the same time, try to coordinate with our spouses (or figure out how to do all this on our own), and remember that we have parents and extended family that need attention. Oh, and then there is maintaining the house, grocery shopping, etc.

I do not mean to infer that fathers don’t have a role; however, these tasks generally fall to the mother – even when she is a working mother. So, if I didn’t properly recognize all that they do, mothers should be recognized for their efforts, and not just one day a year.

I was reminded of a comment that a person made about people having children – that having children was a selfish act. Some people may decide to have children in order to continue the family line; perhaps to have someone who takes care of them in their old age; or out of loneliness. This is not to say that there aren’t bad mother’s out there – unfortunately there are many and this blog will not address them. Raising children requires one to be selfless. It is a tremendous responsibility that should not be taken lightly. I give kudos to those that have decided not to have children for whatever reason. It is better to not give birth than to have a child that is not really wanted.

I just wrapped up another series of chemo treatments. I go Tuesday the 18th for another set of scans. Pump up the prayers and keep your fingers crossed. I’m learning about new supplements that are supposed to help neuropathy – I am leaving no stone unturned. I even started to ice my feet during chemo – the nurses are all very curious to see if this works. Oddly enough, I found that after icing, my feet feel a lot better for several hours. I did this last night and noticed a marked improvement in movement.

As I mentioned, we are leaving for New York. Tomorrow we are going to the Metropolitan Opera to see a performance of Lulu. I understand this opera is pretty intense, but I have never been to the Met and am very excited! The weather is supposed to be warm and sunny, so we should have a great weekend….. just like the week before!

Mother's Day

2010-05-09T11:24:00.000-04:00

I am sure many of us are spending at least a few minutes reflecting on our memories of our mothers and/or our experiences with our children as they were growing up. Hopefully most of those memories are good ones and bring smiles to our faces.

Parenting is difficult. Motherhood does not come naturally although I think most people believe it should. Most often, all we have to draw on once we have a child are our own experiences of growing up and being “mothered”. I grew up in a rather chaotic household, youngest of four. My widowed grandfather lived with us and needed much care. My mother worked full time when I entered elementary school, my father had his own business, my mother was probably going through menopause during my early teen years – there was much screaming and yelling. I can only imagine the difficulties and rough periods my parents had to overcome during this time. There was not a lot of nurturing, vacations or ball throwing in the backyard.

My parents were raised to never question an adult’s decision and never to ask why. Women didn’t talk about menopause, and my parents would never share their concerns with us or talk about how they were feeling. It was “do as you are told or else…”

My philosophy on parenting was to treat your child like you would have liked to be treated. I tried to create an environment where Lauren could grow confidently; knowing she was loved, that she was beautiful and that she could do anything she put her heart and mind to. I spoke to her in a way to enable some understanding of what was going on around her, not treating her as a child, but not as an adult – as a person. She was also taught how to be responsible for herself by being independent. This last trait was something my mother instilled in me. I always loved being a mother. It was never a chore.

Today I am also thinking of my surrogate mother, Louise, the mother of my oldest and dearest friend, who I called "mom". On Sunday mornings I would go to her house (skipping church), and she would prepare breakfast for the family. In an electric frying pan she would cook a load of bacon and then fry eggs – over – in the bacon grease. She taught me to eat a fried egg on top of a piece of toast, which to this day is the only way I will eat an egg. I lost my taste for eggs when my mother forced me to eat a scrambled egg until I threw up. Louise was always there to commiserate with when I would have screaming battles with my parents.

So how do we celebrate mothers? Many feel that Mother’s Day is a Hallmark celebration; I tend to agree with this. Yet again, things get blown out of proportion. Instead of true appreciation for what it takes to maintain a household, especially today, and raise a healthy family, the day becomes an obligation to buy gifts, go out for a pre-fixed menu dinner and compare notes with your friends about what you got. And, why should appreciation be limited to one day?

A group of us discussed this at lunch yesterday, and the consensus was that at least naming a day for mothers serves as a reminder that we are here, for better or worse because of those who raised us; of our obligation to our own children; and to those who for many reasons leave the bulk of parenting responsibilities to one person in the household (be it mother or father), that they should be thanked and celebrated.

So to all of you who are responsible for caring for a child, Happy Mother’s Day!

It has been a very busy week, so my blog is very late. Thierry is on Curlew getting her ready for the sailing season. I am not really sure what I have been doing, but haven’t been home much. I began a volunteer project this week which will continue for a few months – working with a non-profit dance group on board development. I spent a night at L&M’s which was like a mini-vacation. We pampered ourselves with massages yesterday, and today my sister Jean and Lauren are preparing dinner for 18-20 – final tally not in. It has been another wonderful week.

Italy, the Final Chapter

2010-04-30T22:43:00.001-04:00

It is 6.26 a.m. on Friday morning. I finally decided to get out of bed after waking at 5:00, the usual time I rise the day after chemo. It is a good time to begin my blog, there is nothing to distract me and I can watch the sun rise over the Ben Franklin bridge.

During our final week in Italy we managed to see a few of the local attractions and other towns in Tuscany and Umbria.

Thierry and I went to the Gothic church of Santa Croce which was built in 1294. One guide book compared this church to Westminster Abbey in London, as it is filled with tombs and grave stones of the dead. There are some elaborate tombs including those of Galileo (Thierry wondered why he was here as at one time he was almost excommunicated), Michelangelo and Machiavelli, among others. There was some restoration going on but we did manage to see these important tombs.

We then walked to the Palazzo Pitti, built in 1457 for the banker Luca Pitti. It was later bought and expanded by the Medici family and became their main residence in 1550. Later all Florentine rulers lived here. There are many galleries, and we decided to limit our tour to a few and then tour the Boboli Gardens which are an extension of the property. As it happened, our tour of the residences was quite extensive. When we found the entrance to the gardens, we were faced with a huge climb including many steps. After our long walk from the apartment to Santa Croce and then to the Palace, and facing a fairly long walk back, I was too tired to attempt this. We decided to return another day, unfortunately, that day was Monday and they were closed.

We had a wonderful evening at the local wine bar with our friends from Holland, Roely and Hans. Happy hour started at 7:00, which means a buffet of various appetizers served until 10:00. Our bartender for the first part of the evening had spent five years in San Francisco and brought out a terrific Chianti from the shelves. A new bartender came on later in the evening and laid out shot glasses for all of us! Whew, had a really great vodka that we never heard of – 42 Below from New Zealand, I think. Went down real smooth!

We had our first formal tour on Friday. We were picked up at 9:00 by Carlotta, a native of Sienna who speaks very good English. This was our first really rainy day, but the weather did not dampen our experience. We went to the lovely town of San Gimignano which became very popular in medieval times as it was on the main pilgrim route from northern Europe to Rome. At one time the town had 76 towers built to serve as both private fortresses and by symbols of wealth by the rich. Of these, 17 remain. The palazzo remains much the same as it did in the 13th and 14th centuries.

We then went on a wine tour of the Verrazzano Vineyards. Part of the tour included a five course lunch and a selection of four wines, a dessert wine served with biscotti, and grappa. The food was very good, and included wild boar prepared in various ways – all of which were wonderful. Wild boars are plentiful in this region and are raised at the vineyard.

Our second tour was on Saturday. Our first stop was the monastery founded by the followers of St. Francis, Hermitage (Santuario) of Le Celle and the Cell of Saint Francis. St. Francis came and prayed here. It was a lovely, serene place and is open to those wishing to go away for a peaceful retreat.

We then went onto Cortona, one of the oldest cities in Tuscany, founded by the Etruscans. Here two movies were filmed: Under the Tuscan Sun and one of the Twilight films. We left there for Montepulciano, a walled town - it is also one of the highest hilltop towns in Tuscany at 1,950’. We had lunch at a local restaurant, then went for a wine tasting. Of course we purchased a few bottles as well as some olive oil to bring home for the family.

Sunday was a national holiday dedicated to celebrating the liberation of Italy from the Germans. There was a market set up in the Piazza della Repubblica selling local specialties such as cheese and olive oil, which we discovered on our way to the Market at San Lorenzo. The prices at San Lorenzo were much better than at the New Market – where I shopped before. We made a few purchases, had lunch, then finally toured the Duomo. The Duomo or cathedral is huge and does dominate the city with its enormous dome. The dome was built by Brunelleschi without scaffolding. The interior was also quite impressive, although much of the artwork was removed to another building.

Monday we toured the Medici Chapel, the first floor of which was filled with magnificent vessels containing relics of 40 or 50 saints. Thierry was a little taken aback as he could not understand the significance of the bones. The chapel is on the second floor and is quite magnificent, even though it was under repair. Six grand dukes are buried here in elaborate tombs. Another room contains tombs designed by Michelangelo, considered to be among his most famous works.

Tuesday, our last day in Italy, we went on our final tour to Deruta where the famous majolica is made and Perugia, famous for its chocolate. We toured the U. Grazia factory in Deruta where we were shown the manufacturing process from start to finish – all done by hand. It was a real treat to watch the potters, stencilers and painters at work creating these magnificent pieces. The owner has sold his products to Tiffany’s, William Sonoma and Neiman Marcus, as well as to George Clooney and a famous Italian director, and now to us. He was quite a character – we had a really good time. From there we went to Perugia, which combines the old with the new. We toured the old town and saw some magnificent views of the surrounding countryside.

Our trip home took us through Frankfurt via Lufthansa, where we were to pick up a US Airways flight. We arrived with about an hour to spare; however, the Frankfurt airport is sprawling and full of large, low buildings that are not connected. A bus met our plane and drove for about 15-20 minutes to the hangar. We then had a 15 minute walk to the gate, where we had to re-ticket our flight. We were the next to the last to board the plane. When we arrived in Philadelphia, we were shy one suitcase, Thierry’s. This was quite disturbing as it contained 3 bottles of wine and a bottle of Dutch jenever by our friends from Holland.

We had a wonderful trip. Tuscany is absolutely beautiful and unlike anything I have ever seen. But as Thierry said, it was nice to be back in our bright condo, with our big windows and large shower.

Italy, Capitolo Duo

2010-04-22T05:02:00.002-04:00

As I write this the washing machine is humming in the background (just like home). Thierry had to help with this one, as he has experience with European models. Speeds and cycles are grouped by temperature, not by regular, heavy, delicate, like we are used to in the US.

We have been taking our time exploring Florence, and took an overnight trip to Venice. I have good days and not too good days, so we haven’t been pushing. On Saturday, we walked around the Duomo and onto the Accademia Gallery to see Michelangelo’s statue of David which he created at the age of 29. The statue is quite magnificent. The Accademia also has an exhibit of musical instruments from the late renaissance, some of which were built by Stradivarius, and were part of the Medici collection. This also was very interesting and an exhibit that Thierry thoroughly enjoyed.

On our way back to our apartment we found the second of two open air markets where they sell leather goods, scarves, gloves, etc. The vendors were packed in very tightly and the stalls were quite crowded. Thierry felt uncomfortably claustrophobic and wanted to leave. We’ll have to go back and look again so I can buy something. So far, other than books, food and one scarf, that I purchased at the New Market, but found cheaper at the second market even after my negotiations, I have purchased nothing.

Thierry found a few walking tours detailed in his favorite travel guide, DK (Dorling Kindersley). One was billed as a two-hour (two mile) walk to the Church of San Miniato al Monte, starting at the Ponte Vecchio which is about a half-mile from our apartment. I failed to notice that the trip to San Miniato is uphill. I mean, really uphill complete with steps – lot’s of steps. But we made it, and it was worth every step. The views of Florence were breathtaking.

The church itself, which was built in 1018, is said to be one of the most unspoiled of all the Romanesque churches in Tuscany. We heard some beautiful singing and we were trying to determine where it was coming from. Thierry thought perhaps it came from the crypt. We then happened to walk past a closet and inside was a wifi router and a sophisticated amplifier system. Thierry also noticed little Bose speakers around the church. Well, it certainly added to the ambiance.

We treated ourselves to a birra when we arrived back in our neighborhood. We managed to find a great bar a few streets away and had a nice conversation with the bartender. We haven’t noticed any bars or places to go and sit on a barstool and hang out and drink beer. There are wine bars which have a bar with no stools, and may have tables in the back or out on the street, but this was the first one that we noticed that had a few seats at the bar. The bartender told us of another place not too far away that has a big bar, “just like you see in American TV shows, with a long bar and many stools”. We haven’t explored it yet.

We left for Venice on Monday morning. The train terminal was quite crowded and a sign was posted indicating that all trains heading north were booked until the end of the week (due to the airline situation). We arrived in Venice around noon and found our way to the hotel. Ca’ Le Vele was located on a quiet street and canal in the Cannaregio section of Venice. It is owned by two brothers, Max and Ivan. The hotel only received one star in Frommers, but was listed as a “find”. And it was. Quite charming, beautifully decorated, quiet, and they served a nice breakfast. It was very close to a Vaporetti (water-bus) stop and was also within short walking distance from the Rialto Bridge and the Piazza San Marco, both of which we visited.

Venice is wonderful and unique, charming but crowded with tourists. The decay that we saw everywhere was amazing. You would expect some day that the entire city will collapse. Add to this that the water levels are rising, and that the city itself is sinking by one inch per decade, and the recipe of disaster is complete. We’re glad that we saw it in its current state. We decided to walk as much of the neighborhoods as we could and get a feeling of the place, without the tourists. We visited the Ca’ D Oro Galleria Giorgio Francetti and saw an exhibit of Italian renaissance art as well as an exhibit of Dutch and Flemish drawings and 17th century art, including a Rembrandt.

We took advantage of the Vaporetti to spare me some walking. Our first stop was the Lido, where we walked around the neighborhoods nearest to the Lagoon. We left again back to Venice and got off at Giardini and walked in the garden and had lunch. We then got back on the Vaporetti and stopped to see the Jewish Ghetto, which was not far from our hotel. Thierry got a bit of a water/boat fix, and we both enjoyed the quieter side of Venice.

We arrived back in Florence to learn that L&M’s plane was cancelled (just that day), so they will not be joining us. My disappointment is palpable. Friends of Thierry’s from Holland (Hans and Roely) visited with us today and we’ll see them again at dinner. We have six very busy days remaining, and hopefully our flights will be able to leave the continent without any difficulty.

Since my last blog, we have found grocery stores. Now it seems they are almost everywhere. Very hard to see, they are much more subtle in their advertising here than in the States. Generally they are small, but carry a sufficient amount of fresh and packaged goods.

I have learned to walk down the street without having to jump out of everyone’s way. You must not look the opposing foot traffic in the eye (especially males!) Once you do, you are lost. You must walk with your head down or tuned sideways and with purpose. You don’t always make it without being forced aside, but it works more often than not.

Arrivederci, it has been a beautiful week in Italy.

Firenze, Capitolo Uno

2010-04-17T05:09:00.005-04:00

Our trip over to Italy generally went well. Thierry finally forgot to take his Swiss Army knife out of his pocket and had to give it up at the airport, quite traumatic. I then left my cell phone in the “bin” after I got myself and stuff back together from the security check, but was able to retrieve it before departing.

The flight was pretty smooth. We were able to upgrade to first class which made a huge difference. At least we were able to stretch out and get a few hours sleep. We made our connection in Frankfurt, but I was frisked pretty thoroughly – I had taken my water bottle off the earlier plane and put it in the outer pocket of my backpack. It was over 3 oz, a major offense.

When we arrived in Florence, we telephoned our landlord to let him know we had arrived. We rented an apartment in Florence Centro (near the Palazzo Strozzi), just a few blocks from the Arno River. He told us he would meet us within an hour. We took a cab and arrived at our destination in about 20 minutes, and waited almost an hour for Federico to arrive. He was all flustered, and commented that the cleaning lady hadn’t finished preparing our apartment. I was a little shocked at first to see that the place looked so “rustic”, but have since become quite used to it.

The apartment is on a busy, expensive shopping street, with high ceilings and long windows facing the street. There are two bedrooms which are in the back. One with twin beds has a window overlooking the alley; ours has no windows other than a small one that opens to the stairwell. Needless to say, with no noise and no natural light, we have been sleeping pretty late (or maybe it’s getting used to the time difference?). There are two bathrooms, a big dining area and kitchenette, and large living room with two sofas.

It took us some time, but we finally found grocery stores. I guess I am so used to Amsterdam, with fresh markets, bakeries and grocers within a few blocks of each other, I find it a bit hard to acclimate. You know I always think of food first! There are stores that sell fresh parma and cheese; however, the cheese selection is very limited, mostly to parmesan and gorgonzola. Perhaps this is regional, or perhaps our view is limited to where we are staying. The bread here is not very good. As a matter of fact, it is very bland, and it is the same everywhere you go. Even the bakeries sell the same thing you get in a restaurant. It is white, with a fairly hard crust, but just not very tasty. Thierry thinks it lacks salt.

We have eaten in a good restaurant, a not-so-good restaurant, and a great restaurant. All of these we have found by walking the streets and just popping in. Tonight was the topper. The owner/host/manager was very friendly and engaging – spoke great English – and, like all good hosts, made a slew of recommendations which we could not say no to. So, we had a great Chianti, a wonderful, thick tomato soup, a dish of pasta with fresh clams and shrimp, ossobucco and veal scaloppini. Finally, we had a strawberry tart for dessert. I am stuffed as I write this. For those in the family reading this, before the meal they brought a plate of fried dough. I don’t know what they called it, but it reminded me of pitzadells (sp?) – without the powder sugar.

Our apartment is in a great location; easy to walk everywhere. We bought our tickets for Venice yesterday at the train station. We saw a marvelous art exhibit at the Palazzo Strozzo which included artworks by Giorgio De Chirico, Max Ernst, Rene Magritte and Balthus. I know we will not be spending a lot of time viewing Renaissance art, and this was really a treat. We walked across the Ponte Vecchio, the oldest bridge in Florence, and walked to the Pitti Palace, but did not go in; we may go back.

Generally, we have spent the last two days getting acclimated. Oh, and waiting for Federico. Our internet connection went down on our first full day here and we actually believed him when he said he’d be here in an hour. When the internet still didn’t work this morning and Thierry called him from the pay phone, he told us he forgot! I guess we are on Italian time.

Today we finally bought an Italian phrase book. While sitting in the restaurant tonight we started to browse through the book. The first page that opened contained the following statement: “I suffer from coeliac disease, which is a gluten intolerance leading to serious digestive problems.” Ok, I realize this is a problem for some people, but even if a gluten-challenged individual was able to spit this out – would they understand the answer? And what would the answer be? And what would be the next statement? Perhaps it would be easier to just skip the pasta course.

Some observations:

The streets are very clean. Little litter.
The shops are very clean – the windows sparkle as do the display cases.
You actually see shopkeepers (women in their very nice outfits and high-heels) who work in these high-priced stores outside sweeping the sidewalks in front of the store and cleaning windows before they open for the day.

You see lots of young people (as well as old), but very few totting little dogs. It seems the cutsie little dog obsession has not hit Florence, or at least where we are. Thierry thinks it’s because there are a lot of tourists here, but there are many residents as well.
Instead of hundreds of bikes (like in Amsterdam), you see motor scooters and little electric cars.
People on the sidewalks move for no-one. The streets and sidewalks are narrow. But no-one will move for you. We thought this was bad during tourist season in Philly – well Philly is a cake walk compared to Firenze.

We are having fun learning the neighborhood and are looking forward to seeing more of the better-known sites. Monday we go to Venice for two days and then Lauren and Mike join us for a week.

It has been a great adventure and a wonderful day!

NOTE: Thierry added a link to our pictures from Italy (see right)

Celebrate!

2010-04-13T16:25:00.000-04:00

I am worried that I am becoming a bore. You know the kind of person that always knows better, or has to interject words of wisdom when all you really want to do is rag a bit?

We celebrated my sister Ann’s 60th birthday the other day. It was really nice; a lovely, four-star restaurant overlooking Rittenhouse Square; it was a beautiful day, everyone was in a good celebratory mood. Ann really is not dwelling on turning 60, but comments were made when the waiter brought over a petit four on a plate with Happy 60th written in chocolate. We got into a discussion about age and once again I had to chime in…. celebrate 60! You are so lucky to be 60! I hope I live to be 60.

There aren’t many things people say about their health, their situations, their trials and tribulations that upset me. Often times my friends will apologize and say they shouldn’t complain (“Look at what you’re going through”). However, this doesn’t bother me. I never think about how their situation relates to mine. When someone is in chronic pain, whether physical or emotional, it hurts and you suffer. No one should feel badly about sharing their pain with a friend. There is always someone who has it worse than you!

But when one of our friends hits a milestone age and comments on the number I open my mouth. I consider significant milestones to be 50, 55, 60, etc. I understand that when you reach one of these ages it causes you to reflect a bit on the past, makes you realize the clock is ticking and the future is looming and daunting. But what wouldn’t I give to celebrate another birthday! I have to admit, I truly don’t want to die in my 50’s. It is just too frigging young! I’ve really set my sights on 60.

And yes, there are people who have it worse than me. There are women walking around with the same disease and symptoms who are younger than I am. Some with new husbands and small children that they won’t get to see grow and develop. Although I have pretty much stopped reading the obits, it is sad to see so many young (younger than me) people die from all causes. I try to tell myself that in many ways I am lucky, and I do believe that – but it doesn’t quell my frustration when I hear someone dread their upcoming birthday.

CELEBRATE! Every year… every day.

We’re getting ready to leave for our trip. We’re both looking forward to having an absolutely incredible time… I am determined to make my 56th year the best it can be. BUT everyday is now a milestone and I am thankful for each one!

Yet Another Food Fest

2010-04-09T17:46:00.001-04:00

Our Easter week was a busy one. I managed to go grocery shopping on Wednesday anticipating crowds as the weekend approached – I think that was a good idea, although as usual, needed to make several trips to the local market for things I overlooked. Thank goodness Thierry is such a good sport – he made one trip to the store for me.

Chemo was on Thursday. My nurse, Jackie, was terrific and got us out by 2:00. Friday I managed to get to the gym. Made a pizza out of whole wheat pita which fell upside down in the oven, well mainly on the oven door, which I had just cleaned two days prior because I had done exactly the same thing the week before. Follow? Then I began making the lemon squares for Sunday. Things were humming along until I added the baking soda to the egg/sugar, lemon juice mixture. The recipe did not warn me that this was also a science project. The liquid started to fizz and rise to the top of the bowl, eventually spilling over the edge and onto the counter. I began to scream for help, along with a few other choice words. Thierry rushed in and actually looked somewhat stunned. I managed to lay out some aluminum foil and moved the bowl on top enabling me to save some of the liquid. What fun!

Saturday I picked up my sister Jean and Joan and we trucked out to Lauren’s and Mike’s (L&M's) to get our part of Easter dinner ready. It is so wonderful to have a “team” to work on the preparations, and after having done so many dinners together it is like a well rehearsed performance. We made stuffed shells, basically from scratch meaning we boiled the pasta shells, mixed the cheeses and stuffed the little buggers. We also made our own sauce from canned tomatoes. We cooked 4 boxes of shells (don’t ask me what WE were thinking, but they made good leftovers). While this was going on, preparations for Italian wedding soup were also underway.

We had ordered (on Pop’s recommendation) two 10 lb pork shoulders, so we could prepare Joan’s pulled pork dish. Don’t ask me what HE was thinking! We made a group decision that that was too much and cut a hunk off one of the legs. Joan showed Lauren how to prepare the pork, which was once again, wonderful. We helped put Easter baskets together for the kids, stuffed plastic eggs for the egg hunt and got the tables ready. When we left at 3:00 things were in good shape.

Thierry and I took our bikes out Easter Sunday and rode up to Fairmount (near the Art Museum) for breakfast, then up and down the West River Drive along the Schuylkill River. It was a beautiful day and the Cherry Blossoms were in bloom. We rode a bit slow as I have little power pushing me these days, but it was a great relaxing ride just the same.

Later we picked up Lisa and Kirk and their 20 lb. Easter Bunny Cake and headed to L&M’s. Due to the precarious nature of the cake “plate” one of our passengers had to lean over the back of the seat to hold the cake in place on what turned out be almost an hour long trip. We arrived to find the house bustling with kids and food prep. Lauren’s brother-in-law, Ed, loves to cook. He prepared a chicken dish, veal marsala, linguini, rice pilaf, a ham, and roasted peppers. Of course, there were appetizers to start – cheeses, dips and Koniko made Sushi! We were all thrilled as her Sushi is wonderful. For desert there was another bunny cake prepared by Lauren’s sister-in-law (Kathy) and Michael’s Aunt Bernie brought an amazing strawberry cheesecake, and then there were my lemon squares and all kinds of chocolate candy. I am sure there is something I have left out (Oh mom’s broccoli-rabe), but you can only focus on so much food at one time.

I should mention that Lauren expected about 35 people, not counting the four under 16. I believe she did have that many over the course of the afternoon. Yet, as you can imagine, there was a ton of food left over.

Growing up, Easter was one of those holidays celebrated with the “families”, my two aunts/uncles who lived about 20 miles away in Newtown Square. They each had children close to our ages (for a combined total of 5-add our 4), it was always a bit chaotic. My grandmother lived with my one aunt/uncle which is why we usually went there. Holiday dinners generally consisted of soup, often pasta, meat as the main course, fruit and nuts, dessert and of course, after dinner drinks. Afterward everyone sat around the living room dozing in front of the TV.

Holidays always carry a certain amount of angst when it comes time to decide where you are going to spend it. Some families celebrate with both sets of parents, others alternate holidays – Thanksgiving with one, Christmas with another, e.g.. Others spend Christmas one year with the wife’s side, the other with the husband’s side. It seems that adjusting to these arrangements is always most difficult for the wife and the set of parent’s that are left on their own.

I could never give up Christmas with my family, but was willing to alternate Thanksgiving – which worked well especially when Lauren was in West Virginia during her college years. Easter was one holiday I really had no feelings for – I mean what is Easter anyway (I get the religious significance, but this is subject matter for another time). Doug and I handled the Christmas issue by having it at our house. That way we never had to make a decision as to where to go. This may not always have been the best decision for those attending, but it worked great for us.

My sister, who lived in New Hampshire, would come home for Thanksgiving (I think sometimes for Easter), but stayed home for Christmas. A few times my parents would go up to NH to spend it with them, and once or twice I went when I was single. I always missed having my parents around at Christmas, but can imagine what it was like for Ann not to have any family around.

When we started cruising on Curlew, we were away for Thanksgiving and Easter. I was able to adapt at Thanksgiving, missing only the time spent with family that I hadn’t seen for several months. We always flew home for Christmas. My sister went away with her husband this Easter. I know deep down it was probably a little hard for her to not be there with all the activity. But I think it is good sometimes to just do your own thing, especially during a holiday that has a very deep spiritual meaning for many, and a highly commercialized component focused on distributing and eating massive amounts of colorful junk food. We frequently have family meals together, we shouldn’t need to attach such significance to “holiday” meals, but traditions are hard to break. I can imagine for those who see so little family, that these occasions are important times. Any time spent with family is important to me, and I truly enjoy each opportunity – even when I have to cook (and complain to myself about it).

It was a wonderful week!

Battling Cancer

2010-04-01T12:02:00.003-04:00

A friend sent me a link to an article written by a guy who recently went through chemo and radiation for prostate cancer. His article discussed phrases that are used to describe one's journey with cancer, in particular, about battling cancer. You’ve seen them or heard them, terms used when someone passes, the obits that begin “So and So died after a long battle with cancer;” or “So and So died after a long, hard fight with cancer.”

For some time I have thought about my obit and how I did NOT want it to make any reference to a fight or battle with cancer. I agree with this author, you don’t fight cancer; you learn to live with it. When you are first diagnosed and you recover from having the floor drop from under you, you make a choice. You’ll choose to deal with the disease, its treatments and the outcome and make the best of things, or you’ll choose to go through the treatments, etc., feeling sorry for yourself and bemoaning your circumstances for the rest of you life – no matter how limited that may be.

You look in the mirror each morning and try to focus on your face, not on the lack of hair on your head. You learn how to draw on your eyebrows and complement yourself on your artistic ability, and make a commitment to looking your best each day no matter how lousy you feel. And on those lousy days you tell yourself to keep moving, go to the gym, walk to the store, find something in the house to do so you’re not curled up on the sofa, and you try to focus on positive thoughts instead of the death scenarios. The trips to the infusion center become part of your routine – like going to the office – and you tell yourself you are going there to kill cancer cells and buy yourself some time. You look for ways to lessen the side effects of the treatments and you try not to complain too much and drag everyone down around you. You don't think about the travelling you can't do (like back to the Bahamas on Curlew), and figure out how you can fit in a long weekend in NY or to the West Coast, and how you can skip a treatment to take two weeks to go to Italy or maybe Maine in the summer.

There are also those people that say cancer is a blessing. I certainly don’t buy that one! Although I still don’t really know how much time I have (the proverbial bus could be on its way up Arch Street), I do know my time is very limited. So having the disease does put a new urgency on truly living each day and spending time with all those close to me. But I do not feel lucky or have a sense that any spiritual deity has done me a favor.

I have generally (on good days) accepted that cancer is part of my life; that I have to live and deal with it. And yes, I have instructed Thierry to make sure that in my obituary, words like struggle and battle are not to be used. Maybe he could say “she loved life, family, friends and food.” Mmmm, maybe I should work on this!?

On Tuesday I had my first acupuncture treatment. It went fine I guess. Today is my second, almost right after my chemo treatment. We’ll see how it goes. I spoke to the Doctor about getting a Tens-unit for my feet – she said she hasn’t heard that it is helpful for neuropathy. She suggested exercise and walking, which I am doing.

It has been a great week! Now we’ll get ready for Easter dinner at Lauren’s. It promises to be quite a feast – with 35+ people and kids. I’ll be sure to post pictures – the food is going to be incredible.

Charting a New Course

2010-03-28T13:46:00.004-04:00

I decided to make a few changes over the last few weeks regarding my alternative medicine treatments.

During my last chemo break I continued the vitamin C treatment only to find that I really did not feel very well, the afternoon of the treatment and during the following few days. I was terribly tired and just felt lousy overall. Also, the neuropathy continued to worsen.

I did speak to the “fellow” who is working with my oncologist about the neuropathy and later, the oncologist. Both said it would continue to get worse. The fellow said if it gets really bad they would cut back on the treatment, either by lessening the chemo dose or the frequency of the treatments. When I spoke to the doctor, she said neither of those were options for me as the cancer would begin to grow again; yes, scaring the s..t out of me!

Not to be defeated, I decided to try a few things on my own. I learned on the internet that Vitamin B is supposed to help with neuropathy, so I called the doctor and ordered up some pills. One of the effects of neuropathy is that you can lose muscle control/mass, so I now keep a weight near the sofa. When I sit for any period of time, I put the weight under the balls of my feet and roll it back and forth. This is my own idea, I really don’t know if it will help. I also started doing some exercises with my hands using the dumbbell. I had learned these from an exercise program geared toward basketball players that were designed to strengthen the hands. I am also getting some squeegee balls that Jean picked up at a convention to work my hands.

Finally, I made a series of appointments with an acupuncturist. Dureet works in an office two blocks from our condo. What I did not know until we met is that she works several days a week with cancer patients at the American Cancer Center. She is very familiar with neuropathy, and recently attended a workshop at Sloane Kettering on the subject. She said her patients do see results – although it may take time. She also said that acupuncture has been shown to help people with allergies, so I am hoping it will help with my sinus issues as well. Another good aspect to this decision is that it is much cheaper than the vitamin C infusions; two acupuncture sessions are less than one C infusion. They will take less time (1 hr vs. 3) and, to top it off, I get to lie on a heated bed. Tuesday is my first session.

I have felt surprisingly well during this chemo break, having many days with lots of energy. It has also been a busy week. My art class ended on Wednesday and I signed up for another which begins in a few weeks. Thierry and I have been to two concerts, and I went bowling with the family and friends (TD paid Curlew a visit). I haven’t bowled in probably 20 years – it was great fun. Dad came and coached Juan (my brother-in-law). Mike was the big winner. I managed to break 100 the first game, bowled 78 in the second.

We’ve booked a number of day tours that we will take when we are in Italy. In case I didn’t mention that yet on the blog (with Facebook things get confusing), we are going to spend two weeks in Florence in April. We rented an apartment and plan on taking day trips to see Tuscany. We also booked a hotel in Venice, where we will spend two days. Lauren and Mike will join us on the second week. We are all very excited. I have never been to Italy.

It was a great week, and tonight another great meal at mom’s – I’m cooking!

NOTE: The picture of the Kimmel Center stage was taken by Thierry on his cellphone. We heard a performance of Mahler's Symphony #2 by the San Francisco Orchestra conducted by Michael Tilson Thomas. The bowling picture was taken by Joan on my cell phone.

Dear Journal

2010-03-20T23:23:00.001-04:00

The subject of journals came up at our book club meeting a few weeks ago. We had been discussing the book, “Sing Them Home” by Stephanie Kallos. A very long story about a dysfunctional family from Nebraska, that takes them from present, back through the past, and back up to the present again in some 600+ pages, paperback.

The story focuses on three children who watched as their mother was felled by MS, and who on the day of her planned suicide is swept up along with their home and the youngest child (a daughter) in a tornado. The mother’s body is never found but the child survives, having landed in the roots of an upturned tree. The mother’s story is told by way of her journal, pages of which somehow survived after being thrown in a fire the day of the suicide attempt (and retrieved by her daughter) and then swept up in the tornado.

A lively dialog took place about whether people should destroy their journal before their death (assuming one's timing is good), keep a journal after someone’s death, share one’s journal, or whether a survivor should share the stories found in a deceased relative’s journal. One of our members was adamant that she wanted no one to see her journal as she wrote it in times of great personal strife. She felt it wasn’t necessary for anyone to know these intimacies, but also feared them being taken out of context since the stories didn’t really reflect who she was today – but who she was during one specific period in her life.

Another told the story of a person she knew who died at a fairly young age, and excerpts of her journal were read by her children at her memorial service – something my friend thought was too intimate (I think) to be shared. Another member of our group has been journaling for years and has about six volumes completed. She is hoping her children will read it when she passes, thinking that maybe they will get some insight into who she really was.

I have only sporadically journaled. All during my catholic schools days we were encouraged to keep a journal. It was said that journaling would help with our writing and grammar. I never had the desire, and later never made the time.

After Doug passed and I cleaned out his stuff, I came across some old letters and drafts of letters he had written to his two ex-wives. I was quite shocked to see that these letters discussed marital issues they were having – the same issues with both wives – and the same issues he and I had been arguing over for years! Needless to say it left me in quite a state as we had been through counseling (he with his feet dragging), and then you learn that you had been trying to deal with things that would never be resolved. Maybe the lesson is, clean out anything you don’t want your surviving wife/partner to find!

At any rate, I started to journal then to get my head around what had transpired the last few years of our marriage, and how I was going to deal with my new found realization. I probably have that journal somewhere. Would I want someone to find it? I don’t think I care. During some of our trips, I have journaled – noting places we visited, restaurants where we dined, etc. I don’t think these would really interest anyone, nor would I be embarrassed for someone to find them. My blog is my journal, and I am happy to share what’s on my mind with anyone. I am amazed that people are interested. It is my release. I hope my daughter reads it and gets a little more insight into who her mother is. That is really what it is for. Oh, and maybe someday for the grandchildren that I may never know.

Do you journal? What do you want to happen with it, with your stories? Do you ever go back and reread what you wrote years ago? Maybe it would be a good exercise to go back and see where you’ve come from and how you’ve grown – or not. Maybe it’s a good time to check to see if we continue to make the same mistakes.

Today is a beautiful day. Temperatures in the 70’s. I walked across the Ben Franklin Bridge this morning with our friend Susie. We then piled into C-Minor and took a lovely boat ride on the Delaware River. Tonight we have dinner at our friend Ann’s, a concert on Sunday and dinner with the family. It’s going to be another wonderful weekend.

Pictures taken today, courtesy of Susie - a marvelous photographer!

I Guess I'm Just a Good O'l Socialist

2010-03-14T14:46:00.007-04:00

I’ve never wanted to get political on my blog, but I received an email that so incensed me I felt I had to address the topic. The email started like this:

Did you know.... If you're a conservative and belong to the American Association of Retired Persons (AARP), .you're actually funding Barack Obama's radical agenda to change America into an all-powerful Socialist State.

I am so fed up with the Right screaming about the “socialist agenda” of President Obama. They have become as rigid as some Muslims in their way of thinking, and in their approach to issues and their inability to have any dialog that stretches their narrow views. This President, when he just began his term, was immediately targeted by the Right for extinction. Why, because he is “half” black? What are they afraid of, losing power? Is that what this game is all about? Never before do I remember hearing so much disrespectful drivel towards a president coming out of the mouths of Americans, where their slander was not immediately denounced as un-American. And then it was certainly not supported by the mainstream media as it is now by some channels.

Is his agenda “socialist” because he is trying to ensure that all Americans have access to healthcare? I am sure this is not the “only” reason, but surely it is one of the drivers. As I’ve mentioned before in my blog, I live in fear that I will lose my health insurance which will surely speed my death. But the reality is that this is an issue that confronts so many people on so many socio-economic levels – and it will only get worse.

When I see all these people protesting against healthcare reform, I have to ask myself, where do they get their insurance? Are they current retirees on Medicare, are they receiving wonderful retiree health benefits as veterans or as former government workers, or are they lucky to work for a major corporation, school system or union that provides their medical? It is interesting to note that we, as taxpayers, subsidize much of these costs, whether directly through our taxes or indirectly in the cost of services.

The percentage of Americans with Medicaid, Medicare, or military/veterans coverage increased to an average of 24.6% last year, from 23.3% in the year prior. The percentage with employer-based healthcare dropped to an average of 46.8% in 2009, from 49.2% in 2008. These numbers are surely lower now.

Dennis Cauchon of USA Today and Stephane Fitch of Forbes recently wrote that “State and local governments have set aside virtually no money to pay $1 trillion or more in medical benefits for retired civil servants… With bills coming due as Baby Boomers start to retire, states, cities, school districts and other governments may be forced to raise taxes, cut benefits or both.” They further added "that the task of cutting benefits for government employees is especially difficult because state and local politicians are generally beholden to the government employee unions.” Let’s not forget it’s all about getting re-elected – so don’t expect to see any movement to make any changes here.

Cauchon also spotlights the big picture problem: “These medical costs are part of a larger burden taxpayers face in providing health care for an aging population. The federal government has a $1.2 trillion unfunded obligation to pay medical costs for retired.”

For those that currently are depending on their corporations to provide retiree healthcare benefits (especially for pre-65 year old retirees), the future may hold quite a shock. A Watson Wyatt study indicated that “The benefits provided to future retirees will be significantly less generous than those current retirees receive today, as employers are cutting back, capping or completely eliminating their retiree health benefits programs. They further state that the net result of public policy and skyrocketing medical costs has been to render retiree health benefits economically irrational for many employers. Many employers have already reduced or eliminated retiree health benefits, and the trend will only accelerate as health care costs climb. The burden on retirees to pay for their own health care is increasing dramatically, and far too few employees are prepared for the magnitude of the changes that will befall them.”

One advantage for corporate retirees is that they have “access” to group benefits which tends to limit the increase in premiums. But what about all those workers who do not have retiree benefits and retire prior to age 65 - or the self-employed - or those who work for small employers that do not provide healthcare benefits (or do so at a significant cost to the employee).

When people lose their coverage and get over the shock of the cost of COBRA benefits which expire after 18 months, they fall into the “individual” policy category. Costs for these benefits can be staggering. When Thierry’s COBRA benefits ended a few years ago and he tried to switch to an individual plan, the cost went from $395 to $675 per month. Six months later it went up to $845 per month. Eight months later it went to $958, and two months after that he received a notice that the cost was going to $1,346! AND THIS was for an HMO – not even a top of the line plan. Do the math; insurance would have become unaffordable after a few years!

No system is perfect, but we have to start somewhere. The cost of insuring the uninsured is significant, but the cost of doing nothing is much greater. Sitting with your arms crossed in front of you and spouting conservative rhetoric is not going to get us moving forward. It might be said that President Obama is an idealist – aren’t there worse things? Perhaps if this country instituted term limits for members of congress, it would help remove the fear of re-election which is keeping this country at a standstill. I was grateful that this President has tried to improve our country’s image abroad after the damage that was done during the last administration; now I live in fear that this subversive Right may turn us into another third world country, catering to a ranting minority who thrives on conspiracy theories and fear mongering.

As I write this it is gloomy outside, with the wind driving the heavy rain against our windows. Notwithstanding my agitation and this gloom hovering, I feel pretty good and I am going to party tonight – so on average – it will end up being a good day.

Just Call Me Sentimental

2010-03-06T20:47:00.003-05:00

It’s been a busy couple of weeks so I am somewhat behind in my writing.

Last week Thierry got the urge to clean out old files which pushed me to do the same. We purged a bunch of documents (almost wore out the shredder), and made new files for 2010 – albeit a bit late. I also began to clean out some old files that had been sitting on my shelves and found a stack of Christmas cards from this past Christmas, along with wedding cards we received last year, as well as get well wishes that I received when folks heard of my illness, and old birthday cards.

I knew what to do with the files, but the cards were another thing. What do you save when it comes to greeting cards? I have mother’s day and birthday cards from Lauren that go back pretty far, and a few that my sister had sent me -she always picks out beautiful cards and writes such lovely sentiments inside. I have a few cards I received from my parents that actually had something very special written inside and whatever cards I received from Thierry.

When I cleaned out my old houses just before moving, I tossed stacks of cards – after first salvaging those I thought I should keep (as mentioned above). One day, all remaining cards that I have received will be tossed out with all the other junk I have collected. So, the question remains, what should I keep today and leave for someone else to pitch later on.

I decided to toss the Christmas cards, but did save two that were hand done and quite pretty. I threw out the birthday cards, but am hanging onto the get well wishes – I think they could be a big boost to my mood from time to time. I’m also on the fence about the wedding cards. I think I’ll throw them in the bin, but not yet. I was once told I was not sentimental – is this an indication that I might be just a bit or am I keeping them to prove I am?

The ironic thing is, when it comes to cards, I am lousy at sending them, but love to receive them! I am not good at remembering birthdays, although my computer calendar has helped somewhat. Problem is, Thierry is not good about it either – so we tend often to be late in getting things out. In my previous marriage, cards were a big issue. I have a big family, and only send cards to immediate family members (when I remember). It was considered to be the wife’s responsibility to be sure cards went out – which I naturally resented as I never sent cards to my aunts and cousins and didn’t see why I should send them to his!

Now, when reminded, cards will go out to my dear aunts and uncle – you see there are not too many left. Today things are easier, as you can send an e-card. Deep down I think e-cards are somewhat impersonal – there is something about picking out a card, writing something on it and posting it that just makes sending a paper card special. However, I often resort to the e-card as I am usually too late to get the card in the mail.

As I mentioned, it has been a busy couple of weeks. I went to the flower show with several dear friends (it was wonderful - picture by Juan). We went to an opera (Tea – written by Tan Dun, a Chinese/American - very unusual), had dinner several nights with friends, mid-week family dinner (spaghetti and meatballs a la Lauren), heard an organ concert today by Cameron Carpenter – very entertaining. Click on his name to play a clip of him rehearsing one of the pieces he played today at the Kimmel Center.

Tomorrow I am going with my friend Jeanne to hit some golf balls (haven’t done that in about six years).

The sun was out today, the temperature was in the 50’s, I wore a wool coat instead of my down coat – which has been my standard for the past three months – it has been a good couple of weeks!

You Asked Me What?

2010-02-23T15:54:00.001-05:00

As most of you know, my daughter got married in June, 2009. It was a beautiful wedding. She and Mike bought a house and moved in right after they were married and immediately began settling in to their new home and life together.

Not long after the wedding the questions started. To Lauren, “so, are you and Mike planning to have a family”? To me, “so, is Lauren trying to get pregnant? I mean she does want children, doesn’t she”?

Mike told us the story of how he was outside working in the yard one day shortly after they moved in and a neighbor, who he hadn’t yet met, came over and the first words out of her mouth were, “how much did you pay for your house”? Not even with a caveat or mild opening like – would you mind if I ask….

I’ve been arbitrarily polling people to find out about other inappropriate questions that they have been asked and here are a few of the answers I received:

From a single friend: Are you dating anyone yet? Why not? Don’t you want to get married?
From a childless married friend: How come you never had children?
From a recent widow: I guess you’re going to sell the house now that your husband is dead (this was immediately after his death).
From a woman who gained a few pounds: Her co-workers asked if she was pregnant?
Are the baby’s parents going to get married?

I don’t think that there is one reader of this blog who hasn’t known someone who had difficulty conceiving a child. Doug and I couldn’t have children, and it was such a traumatic thing for him that he insisted when someone asked (and they did), that we say we decided one child was enough. I had a neighbor who tried for years to get pregnant – spent a fortune on invitro – had several miscarriages and finally adopted in her late 30’s. She did get pregnant in her early 40’s, but went through pure hell for a long time.

We all have single friends and we know how difficult it is to find the right person, and why would we assume that someone who is single is unhappy? Today it is not uncommon for people to live together and not get married and for single women to have children. It’s nobody’s business why people make these choices, yet often we feel the need to question their motives.

Are people really coming from a place of pure innocence when they ask these types of questions? Is it idle curiosity; is there bit of a snicker behind it, or are these people just that clueless? A person can’t help but be put on the defensive when questions that confront immediate, hard reality are asked. My reaction to someone who wants to know what I paid for my house is to get my back up and say none of your damn business, even though they can look it up in the tax records (which actually could be a good response: “If you are so interested – go look it up!”).

Thierry says this is a purely American phenomenon; Europeans would never ask such personal questions. Perhaps he is right. I often think that we are losing our manners (what are they?), and people have become less thoughtful of others. Perhaps instead of reacting defensively or negatively to an inappropriate question, we should just address the issue head on and express our discomfort or anger – at least it would get the person thinking before they ask another.

As you can tell, this is a subject that gets me riled – I’m a defensive mother hen. But I don’t let things like this spoil my day – and a rainy one it is today. The good side of the rain is that it will clear out some of the snow that is still piled high in the streets. So, I’m curling up on the sofa, with the Olympics on the TV, my book in hand, my man in his chair, and thinking about how good life is.

A Trip to the Barber with Dad

2010-02-21T10:00:00.002-05:00

When my parents were over for dinner on Valentine’s Day I was wigless. Everyone was commenting on how much my hair had grown. Yes, I have a fine covering of fur, sort of like a puppy’s I guess – no more like one of those baby chicks at Easter - light and wispy and mostly gray. Thierry has been telling me for weeks I needed a cut, mainly in the back as it was starting to get a bit out of control. So, I said to dad maybe I should go to the barber. He asked mother if he needed a cut, we decided yes, so on Friday the two of us went to his barber shop.

They happen to have a female barber there, and she was up when it was my turn. This is a pretty traditional shop, by the way. Joe, the owner is a man in his early-mid 70’s and apparently followed in his father’s footsteps. He owns the shop and the building it is in. If any of you have seen my father’s head, you know there is not a lot of hair there, yet Joe takes his time, about 20-30 minutes to give dad a trim around his rim!

Dotty is the woman who cut my hair. She was a bit nervous, I guess looking at this lopsided growth, thick in spots, almost bald in others (definite signs of male-pattern baldness – thicker on the sides, thin on top) was a little unsettling. As it goes, she and her twin sister are both breast cancer survivors. She was very sweet and actually did a pretty good job considering what she had to work with. Hey for $10 what more can one ask for. So now when I wake up in the morning my hair is a little less… messy.

It is pretty odd the way my hair has started to come back – not just on my head but on my whole body. I now shave my legs about once a month AND my eyebrows are starting to sprout. Not as thick nor as long, but light wispy little things. I have to say that I’ve gotten used to drawing them on – but it really helps to have more of a guide.

I have no idea how long this hair will last or how long it will grow, but it is interesting to watch the changes that my body is going through –some good, some not so good – but overall I’m doing great and appreciate everyday for what it brings.

Note: Pictures are pre-haircut

How Long Do You Want to Live?

2010-02-17T17:46:00.004-05:00

About a month ago I had dinner with a friend at a fairly posh suburban restaurant to celebrate her birthday. The restaurant had recently opened a more affordable “bistro” which is where we dined. During the course of the meal the clientele shifted from business diners to local couples. I couldn’t help but observe how well dressed and chic they all looked, especially the tall, elegant woman in her haute couture skirt.

Not only did the women look stylish, but the men were also dressed well and perfectly quaffed. One thing I noticed about these couples were how smooth and silky their skin was – I thought this interesting since their ages seemed to run from early-mid 40’s to late-50’s early 60’s.

Later when we were in Miami, we spotted many women with obvious breast augmentations, as well as many men and women who had some facial work. Then the news hit the stands about a young Hollywood wannabe starlet who had a series of surgeries done to perfect what was already a fine looking body.

Then just the other day, I caught a radio interview with Greg Crister, author of “Eternity Soup: Inside the Quest to End Aging.” The current theory is that aging is a disease to be cured and that aging is, unnatural. Hormone therapy is one of the “potential” cures being touted by the anti-aging movement (although this has not been proven to be effective, and is very costly).

He also discussed another theory, that eating fewer calories will result in a longer life. This is based on research conducted with lab mice and studies of rock fish (where some are suspected to be 200 years old). Folks who follow this thinking eat between 30-40% less calories than you would normally consume at a meal. It has been shown that by eating less, you accumulate less plaque in your arteries. Many anti-aging seekers also take statins regularly, which apparently have the same benefits. One result of eating fewer calories is a decreased libido, but those in this group think it is a small price to pay for a longer life.

Hip and knee replacements are common surgeries these days. Recently a man in Spain who was cured of cancer had his trachea replaced by a non-cellular tube that was infused with his own stem cells. The stem cells fused with the replacement part and the individual was able to recover without the use of anti-immune drugs. While the current and most acceptable theory is that longevity is driven by genes, there is a lot of research being directed at curbing the aging process, and much will be done in the future through genomics.

I am one of those that has snickered and looked askance at people who have had facial work done. Quite hypocritical for a person who had a nose job (when I was 28 - desperately needed – even my mother said she had always hoped some day I would have it done!). I’ve always held the belief that we should age gracefully… but then what does that mean? I would give anything to have someone grow me some new genes to eliminate my cancer. And even as I struggle with chemo in an effort to extend my life, I still look in the mirror and see my mother’s jowls looking back at me – and I think maybe…..

I believe in improving one’s quality of life, but what means quality to me may be very different for someone else. One person’s quality may depend on being wrinkle free, while another’s may be being able to walk without pain.

It is very scary to think that 20 years from now we could have a huge population of “older” adults. What would our society be like, having millions of centenarians walking (or being wheeled) around – with faces that look like Joan Rivers? Where would all these people be housed and how would they be taken care of, needless to ask what would it do to our healthcare system?

So, how old is old, and how long do we (you) really want to live, and what does that life look like? I’ll keep focusing on stem cell research and hope it progresses before it’s too late for me. If I make it, maybe I’ll consider the facelift, lipo-suction, thigh lift and tummy tuck -and when I do die, I’ll make sure the casket is open and I am lying in it – naked.

In the meantime, I’ll try to continue to live my life gracefully, making sure each day is a good one, because eventually, we’ll all end up in the same place.

Test Results

2010-02-08T22:10:00.000-05:00

The news was good – I guess pretty darn good. The scans showed that the tumors are, in fact, responding to treatment. Many of the liver tumors can no longer be seen on the scans, and the two larger, scarier ones have continued to shrink. The larger of the liver tumors has been reduced by a little more than half. There are still small (3 and 5 mm) tumors in the chest area, but the bone lesions have disappeared, and there is no new metastasis.

So, the plan is that I continue on the same treatment plan – at least for the next three months. At that time, I’ll have another set of scans and depending on the outcome, the treatment may change.

I know this is all great, and I should be jumping for joy. But the fact is, this is all extending my life a little, and I will be living with cancer for as long as I live. The time bomb continues to tick. This reality hits me when I see the results, (when I really want them ALL to be gone) and when one of the doctor says, you know this is the best we can hope for. I can’t help but get slightly nauseous when I read these reports and scan the internet for explanations.

I actually wrote this several days ago thinking I would be in a better place to write and post about my tests and my state of health. However, when rereading the reports to relay accurate information, it all affected me again. Overall, I’m doing great. My doctor says all my vital organs are functioning perfectly. I generally feel good, with the exception of the neuropathy which gets worse in both my feet and hands, and my nails (hands and feet) are starting to deteriorate.

I’ll continue to try and focus on meditating, healing and killing cancer cells, and pray for another five years and a breakthrough in treating triple negative breast cancer… and living a full life by trying not to waste any day – making each one the best day of my life.

I Want to Be in Miami!

2010-02-05T17:59:00.002-05:00

Well we’re back, several days now, from sunny, party cloudy, rainy, but warm South Miami Beach (SoBe), awaiting the second major snow storm of the season. They are predicting up to 14 inches in Philadelphia.

We had a nice time away. Our room at the Sagamore Hotel was pretty good – a suite with a kitchen area that included a refrigerator, microwave and a toaster. No flatware or plates, so we picked up some paper and plastic at the drugstore. We shopped at a little gourmet market we found when we were here three years ago with Curlew. We had our breakfast in our room, and also wine and cheese. The room had a king-sized bed, so it was sometimes hard to find Thierry under the sheets.

The hotel boasted that it was an “art hotel”, and they did have quite a number of interesting photo arrangements, sculptures, paintings, and video images throughout. They also had murals painted in the stairway. As the hotel only had 5 floors, it was easy to take the stairway and enjoy the artwork.

We managed to spend one afternoon at the beach – and learned that the chairs and umbrella (which was necessary as my skins is sensitive to sun due to the chemo) each cost $10 (umbrellas $15) to rent (ugh!). We spent the second day (afternoon) at the pool. We went to North Miami Beach for an arts and crafts show on the third day – which was not very impressive, but we had a good lunch at a Thai restaurant.

We saw a performance by the New World Symphony of Bach’s Orchestral Suite No. 3, which included a discussion of the way performances of this piece have changed over the centuries.

Each day we also walked quite a bit, visiting various sections of South Beach, and tried several restaurants on Lincoln Road for dinner at night. One of the more memorable was a Sushi restaurant (“Sushi-Samba”), where there was a lot of action and a great place to people watch – the sushi was good. The other was a place called Spris, where we had salads and a pizza. The pizza was good, the salad was great and the waiter was a lot of fun.

Our last day started out rainy. By the time the rain stopped it was lunch time. We decided to try a little place about a block and a half from our hotel. We were sitting outside under an awning and had just about finished our lunch when it started to rain again. After a few minutes the rain turned into a deluge – it just poured, and poured. We sat there for about two hours observing traffic and those that were brave enough to walk. The streets quickly became flooded.

When the rain seemed to calm a bit, we made a break for it. Unfortunately, the cross streets were so backed up with water, we had to wade through it with the water coming up to mid-calf. Thierry thought it was lots of fun. I was near tears as I was wearing one of the two pairs of decent walking shoes that I own (suede Merrils). When we got back to the hotel, Thierry stuffed them full of newspaper to help them dry out. I kept telling myself I needed to find humor in this (as my sister Jean would say), but the best I could come up with was that I was sure I would laugh about this in a day or two (it only took me until dinner time).

On our last night, we had dinner at a restaurant called Sardinia, which is away from the main drag and is actually very close to where we anchored several years ago. The food here is really good and not too expensive, and of all the places we have eaten in SoBe, they have the best bread. Most of the restaurants in So Be are expensive for really mediocre food. If you want to go to a good restaurant expect to pay $30-50 for an entrée. You can usually find a reasonably priced glass of wine, but the cocktails are in the $12.00 range and up.

I think if we go again we’ll look into renting a place for a month. We would probably spend the same as what we paid for 5 nights. But I like the area, there are things to do, good beaches and much to observe. It was a good getaway.

Letting Go

2010-01-26T22:26:00.001-05:00

I’ve written in the past about incidents that occurred with people in my life that have held me in a state of angst… some silly, and some that have caused quite a moral dilemma.

Although none of these situations have occurred between me and a close, personal friend or family member, they have weighed on my mind and caused me to behave in ways that actually bother me even more than the issue itself – like not returning phone calls of those who have upset me and talking negatively about someone. How do you just let go of these things and move on?

When I was a kid, my mother had an aunt who apparently was a bit of a trouble maker. We called her the professional mourner because no one ever heard from her, but when someone died, she would show up at the funeral and cry, loudly. Apparently she and her daughter did not speak for years. There was some rumor that the mother was after the daughter’s husband (although I couldn’t see that happening), but I never really learned what it was that caused this mother and daughter to go without speaking for so long. I do remember wondering at the time what would ever be so bad that it could keep a family apart and how incredibly sad the whole situation was.

I often wonder about how a person can carry a grudge against a family member, or what used to be an old dear friend, for so many years. As I think about people that I know who have had falling-outs with others that I have also known, you can see the affect it causes among the immediate social network. I find myself trying to accommodate one friend to the exclusion of another – leaving me feeling bad. I can only imagine what that does to families where one member doesn’t speak to the other.

Eckart Tolle in his book, “The New Earth”, says it is the ego that keeps us trapped in thoughts and emotions that propagate these long term grievances. He theorizes about how the ego strengthens itself through complaining, name-calling, resentment and sometimes violence. While charged with these emotions, we tend to become reactive, looking for opportunities to reinforce our opinions, or resentment, our need to be right. Imagine how long term grievances or grudges can change and manifest over time, given the opportunity for us to revisit the subject and apply new issues and resentments on top of the old – do we even really know why we were offended or put off in the first place?

The story must eventually become so diluted, our story being reinforced by years of negative reinforcement – our ego being strengthened – by us being right, the other being so wrong. When do we stop defending the truth and start defending ourselves? When does the offense become so ingrained that it becomes part of our identity, adding a weird sense of value (and drama) to what might be seen as an otherwise humdrum existence?

The fear is that we become creatures of our conflicts, identifying with our rightness in situations, looking for sympathy and validation rather than being whole, pro-active beings, living and enjoying each day for what it brings. (Ok, a little melodramatic here - but it sure does zap a whole lot of energy!)

I am starting to re-evaluate a few of those things that have been weighing on my mind – trying to break them down to identify what really caused me angst in the first place – and to understand the emotions and personal needs that caused me to make certain decisions or take offense in the first place. We all have stories, but rather than try to create one for someone else, I’m working on flushing out the root cause of my own actions.

It’s been another good week. I’ve been taking steroids over a period of four days after my treatments and they are keeping me in good spirits and make me feel much better physically. I go for my scans tomorrow, and then Thierry and I leave for South Miami Beach on Thursday (yeah!), and are looking forward to some fun in the sun!

Meal Time

2010-01-17T22:36:00.000-05:00

There was an article in the Philadelphia Inquirer on January 14th giving step-by-step instructions on how to break into the habit of having family dinners – at home (pathetic). I don’t really remember a time not having family dinners at home – regardless of who made up our family and where we were living. Okay, maybe for a period when I was single and childless I may have eaten out more than a few nights a week – but more than likely I was content with a bag of potato chips and cream cheese and chive dip, and a scotch and soda.

Mom always cooked dinner. Eating out when we were growing up was a major treat; almost like a vacation (which we never really went on). When I started high school and was getting home early, I had to cook. Got to the point where the family would gripe that I always cooked the same things all the time. After my divorce, and Lauren and I had moved to our own place, we always ate together, in the kitchen, at the table. On weekends we would have fun meals in the living room in front of the TV (other evenings the TV was off limits).

When Doug and I married, we still ate a home cooked meal together every evening. Friday was fun meal night (tacos, pizza, in front of the TV), Saturday may have included friends (or was our night out), and Sundays were extended family days. I worked full-time and Lauren needed to be picked up from daycare, so our evenings were usually rushed. Often the trains were late and I was the last mother at daycare. For almost five years I went to night school, and worked, and cooked. Occasionally Doug would make a meal, and when she got older, Lauren began to learn to cook - and she is a great cook today.

I really believe those dinners had a lot to do with our closeness as a family. It provided a great time for everyone to decompress and express what was going on in their day-to-day lives. We told stories, debated issues, argued sometimes and I am sure cried.

We were lucky because Lauren’s sports were right after school. She would get home in time for dinner and then do homework. I do not know how parents with more than one child who are involved with sports do it, nor do I really understand why they want to do it…. put up with all that running around, I mean. Kids are involved in so much – maybe too much, with multiple activities going on at the same time. I wonder if parents think it is easier to run their kids around than having them at home. I believe athletics and the arts are an important part of a child’s growth, but not to the point where they become frenetic, obsessive and all consuming.

It is difficult to have “family” dinners when there is soccer or hockey practice at meal time. It is also difficult to have a family meal of any meaning when the TV or the computer is on, or when someone is texting. More and more I think adults are texting as much as the kids do. I hate to admit it, but as Thierry and I eat our dinner at our lovely table with the million dollar view of the Ben Franklin Bridge, the TV is sometimes on (ohhhhh!). Maybe I can justify that by stating we spend an awful lot of time together!!!

In our family, a lot of what we do is centered on meal times. Tonight we had 13 around the table, three or four conversations going at the same time, lots of noise, lots of laughter – these are the days we’ll remember. So, maybe its quality not quantity, but family meals are a great way to stay close and share – and there are so few times that we really do share as a family today.

We’ve had a terrific weekend. Dinner and a concert (with great seats) on Friday; movie (Avatar 3D) and dinner with Lauren and Mike on Saturday, a visit from friends this afternoon – and then there was tonight, and a wonderful night it was.

Hemoglobin 12!

2010-01-14T13:25:00.004-05:00

Wow, my hemoglobin hasn’t been that high since I started treatment - means I don’t have to have a Procrit shot when I am finished my infusion today. I have a great nurse today, Kevin, that I wish could be assigned to my case – not that Jackie (my regular nurse) isn’t nice and competent, but Kevin is such a jovial, upbeat person (must be because he is Irish). He makes me laugh, is a good conversationalist and makes the day go faster.

I am getting anxious. The neuropathy in my feet is worse and my hands have been tingling this week. It feels like my upper lip is a little numb. My scans have been scheduled for the 27th of January. I have this hope that I will be told I can stop the Taxol (causes neuropathy) and Carboplatin. I have been feeling pretty good, everyone says my test results are great, I look good (so I'm told), I've been sleeping well, and my cancer markers are stable and within the normal range.

With all this good news I can’t seem to calm my thoughts: am I really doing better, will she (the oncologist) stop the chemo drugs once she gets the test results, I need to get off the drugs - but...., how long will the neuropathy last, will the neuropathy lessen, how long can I live on Avastin? HELP, I am out of control!

But, the sun is shining today – temperature is rising into the 40’s, days are getting longer, spring is getting closer – it is a good day!

Turn up the Controls

2010-01-12T18:56:00.001-05:00

The word controlling came up at dinner last week at my parent’s house and has been on my mind ever since. I’ve been struggling with the subject in an effort to write about it in this blog.

I was discussing my problem with how to begin the discussion about control with Thierry the other night in the car, and he commented that the word control has a very negative connotation… when used in the context of controlling other people’s lives. A few synonyms for control: dominate, power, be in command of, regulate, rule, govern, master. No attributes you would want in a marriage, friendship, or at work!

So, let’s take a look at a few of its definitions... the verb form:

a : to exercise restraining or directing influence over : REGULATE. I spent a good part of my last marriage trying to control situations that arose at home. My husband was doing the same thing. Instead of trying to work together to come to conclusions and having open and honest discussions we battled, each one trying to win the argument. When the focus of a relationship is on control, passive aggressive or obsessive behaviors take over. Needless to say, we wasted a lot of time and energy on nonsense, when we could have been having fun.

b : to have power over : RULE. I don’t know about you, but I have always had violent negative reactions to individuals who try to rule or dominate me in any way. I left a board because the president was just that type. Oh, she would sometimes go through the motions of discussing the issue, but ultimately things had to go her way. I’m sure you’ve experienced a boss (or even a parent) whose idea of leading was to basically rule.

Another usage for this definition is the ability to control our emotions and reactions in an attempt to deal with situations and reason through a discussion or disagreement. We can control our thought processes by thinking before we act or speak, and we can control our emotions and how we view our life and the people in it. This takes conscious effort, being aware of our own egos and being able to set them aside to understand the other’s point of view. This sounds simplistic. Yes, we can step back and try to find common ground, but ultimately, the other person has to be willing to do the same. We may just have to walk away.

As I sat on my perch in my chemo cube at the oncology center on Thursday, I couldn’t help but think about how little control I had over anything. I was barely able to control my emotions after a conversation with the doctor, even one in which she expressed how thrilled she was at my progress. This juxtaposition is an interesting one. I am in a relationship where the issue of control doesn’t come up at all. Thierry and I just seem to be able to work together, to get things done – with no big debate or discussion. Yet day-to-day, I am constantly working to keep my emotions in check and not let them get the better of me.

Perhaps that is one of the lessons I am supposed to master in this lifetime… one of control, but over myself. So, I’ll try to concentrate on controlling as much of each day that I can to ensure that time isn’t wasted on negative energy and that it is a good one.

A Few Acknowledgements

2010-01-10T17:39:00.001-05:00

While I am trying to write my next blog, I thought I would take a moment to acknowledge some of the feedback I have received over the last few weeks from my readers.

Many of you have emailed comments on various postings and have shared some wonderful thoughts and moments with me. I understand it is difficult to post to this site. Even I have trouble when I try to respond to someone's comment. I believe Google wants you to open a Google account. Even then, once you enter that you have a Google account and hit post, it comes up with an error message. After entering a second time, the comment is generally posted.

We have had some problems with editing recently and have missed some typos, which my sister Jean kindly pointed out. We review the blog several times before posting, but errors still manage to get through.

My sister Ann found two websites where you can buy eyebrow stencils. I'd be happy to share this info with anyone who is interested. I haven't bought any, but.... around the holidays I received a package from my friend Marion. In it was a complete eyebrow kit which can be used by those with or without brows. The kit, by Anastasia (distributed by Sephora), includes several stencils with different shapes, powder, marking pencils, and brow brushes. This really made me laugh. I actually tried out one of the stencils today. Not bad!

I'll be wrapping up my blog, hopefully this evening. Keep your comments coming!

Happy New Year!

2010-01-02T09:46:00.002-05:00

Are you all sitting down to write up your New Year’s resolutions? I will not be making any new year’s resolutions as I don’t believe in them. I believe that we should be checking and evaluating our actions all during the year and adjust them as we go along.

Any conscious adult knows when they are doing something they shouldn’t – because they feel guilt or shame; like after eating that piece of Godiva from the box sitting on the counter just after eating lunch and a bowl of popcorn with cheese sprinkled on top. You can hear that little voice in your head saying “you shouldn’t have done that”. Or pouring that extra glass of wine when you are already a little over the edge. Or telling that little white lie and convincing yourself that no one will be hurt by it.

Some people make lists at the beginning of each year – like lists of to do’s or goals and objectives. I had tried the old goal setting in the past, and I did achieve some of them; however my goals were not always written, they were mental notes or challenges to myself; like being determined to not be afraid to speak at a board meeting when surrounded by a staid group of old, successful Main Line business men. In order to get over my fear I developed a mental plan: become a lector at church - forcing myself to get up in front of a group of people and read; join professional groups and become active on their boards. Eventually I could interject during a discussion at a Board meeting without turning red and shaking.

A public broadcasting news show I heard this morning talked about the “Exhibit of Lists” at the Louvre. They noted that they have found lists in hieroglyphics on ancient pieces of Egyptian art. The speaker commented that lists appear from the very beginning of humanity, as soon as man was able to write. One visitor to the exhibit commented that “lists may help you remember things, but they stifle creativity”. I agree that lists help us remember things. Thierry is great at making lists: of to do’s, things he needs to pack when traveling, things he needs to buy. My problem with lists is that you have to refer to them periodically – which I usually forget to do.

I don’t necessarily agree with the second part of this statement – because again, lists are really to help you remember things – perhaps he is addressing those that set goals, following their “plan” faithfully to the point of obsession and never straying from the path. I have known people like that – planning when they would get married, start having children, when they would buy their first house and how much they would spend for it, and so on. And they are rather dull people.

One idea about making resolutions that resonated with me the most was stated in a column in our local paper by the writer, Lisa Scottolini. She believes in unresolutions. That is doing what makes you happy. In her case it’s washing her hair once a week instead of every day. A simple rule on how best to spend each day. Just as we know when we are doing something we shouldn’t, we know when something makes us feel good. We can have that piece of chocolate as long as we don’t eat the whole box – at least not in one sitting, and savoring the moment.

I have already decided to try and spend my days doing what makes me happy, even though I don’t always feel up to it. I don’t see this as making a resolution, but adopting a philosophy on how to live.

Thierry and I celebrated our first wedding anniversary on New Year ’s Eve by watching two sets of fireworks from our condo and having dinner at our friends’ apartment. We then welcomed the New Year with a small party at our house, with my daughter and son-in-law and some very good friends.

2009 has been a challenging year, but there have been so many wonderful moments that it has also been a very wonderful year to have been alive.

PS: Thierry took the picture above at this year's Mummer's Parade held in Philadelphia

Christmas Season 2009

2009-12-28T12:17:00.002-05:00

Christmas has passed and I am only just now sitting down to write. I’ve been thinking about what to write for days, but in between getting ready for meals – and eating – I’ve been pretty much lying on the sofa or bed with heating pads and hot water bottles, quite lethargic.

It really has been a very nice, joyous holiday. On the Wednesday before Christmas we went with our friends, Kirk and Lisa, to the Italian Market in South Philadelphia for breakfast and shopping. We went to the “wild” game purveyor and purchased some venison – as we were planning a venison stew for Christmas. This I kept secret from certain members of my family as I thought they would be predisposed not to eat it!

It is always fun shopping at this outdoor market during the holidays. If it weren’t for all the Asian vendors it would feel rather Dickensonian. It was cold that day, and the fires were going in the trash cans behind the vegetable stalls. We stopped in another of our favorite stalls to pick up provolone and pasta cheeses, then went over to the seafood store to buy fresh little neck clams and chopped clams for Christmas Eve dinner.

On Christmas Eve we put together a simple dinner of spaghetti and clams and salad. Mom’s neighbors joined us, as did my brother and his family. Joan and I made a terrific white clam sauce – and she made her killer garlic bread. Earlier that day, Thierry and I put together our venison stew. It was Thierry’s idea to make it the night before – and he was right – sitting overnight enabled the flavors to blend, and if I say so, it was a tasty meal. All but one person ate it, some even had seconds!

Again, our Christmas meal was simple, starting with a salad, then the stew, followed by delicious fresh made applesauce (by Lisa), topped with vanilla ice cream. Joan also made her famous chocolate cake. We began the party with stuffed mushrooms made by Ann, asparagus and nuts by Jean, and absolutely delicious dumplings made by Koniko.

Last night, Sunday, we had our 4th annual family wine tasting; a tradition begun as an alternative to inter-family gift giving. Lauren and Robert (famous wine-guy from one of our local state-run liquor stores) chose a wide selection of domestic and imported wines. We began with a sparkling white from California, a white California Viognier blend, and reds from Argentina, Spain, and France. Everyone (each couple or individual) brought an appetizer and a cheese selection.

Each of these celebrations can be characterized by the same ambiance. A general feeling of (relative) calmness prevailed (which is unusual when a big crowd of Italians and sisters get together). Missing were the frantic, rushing to get the food on the table gyrations that normally take place. I don’t think anyone felt overworked. Everyone pitched in, both in getting things together and in the clean up, and everyone seemed to be engaged in conversation, laughter, and in having just a plain old good time.

I don’t know if I speak for myself, but I must say it was a wonderful holiday, especially when surrounded by my terrific family, great friends and loving husband.

Holiday Wishes

2009-12-28T12:07:00.000-05:00

Christmas got away from us this year. We had hoped to make our own cards again, but unfortunately, couldn’t find an appropriate photo. We then pulled all of the cards purchased at end of season (over the years) and still sealed in their boxes, and other left-overs from previous years. Thierry pulled together his mailing list – I didn’t get that far. We sorted all of the cards on the floor of the office, but alas, that is where they stayed.

So, we would like to now wish all of you a terrific holiday season, and a New Year filled with everything special to you, and may you find fulfillment in all that you do!