The Final Chapter

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

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

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

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

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

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

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

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

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.....

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

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

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

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

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

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

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!

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



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!