Sunday, August 30, 2009

Mary Bird

I figured since you all got the rotten report, I'd open with a picture Thierry took at the Arboretum sans topper. There was a twig structure on the property that actually resembled a hat or a wig. I have no idea what it was supposed to be, but we both thought it would be funny if I jumped in and he took a picture of me inside. I think it looks like a little bald eagle inside a nest. As it goes, we did not bring a camera and only had Thierry's cell phone, which does not have a very high resolution camera. Anyway, I thought it was a funny picture.

Today I am feeling a bit better, but still dragging. A rash broke out around my abdomen. I am sure this is a side affect of the Avastin. This also happened after my first treatment. I am concerned that I will be unable to handle these treatments. Staying positive is my current challenge.

The day I learned that my blood levels were so low and that things took a dive, Thierry, Lauren and I were walking down the street and ran into someone we knew. The person who is somewhat overweight, and sweaty on a somewhat hot and humid afternoon, reached out to take my hand and planted a kiss on my cheek. On our way to the emergency room, this memory cropped back into my head and I muttered in the car that this was the cause of the spike in my temperature. Of course, this had nothing to do with it – but I am suddenly very conscious of every hand shake.

Since Lauren's wedding I have become very aware of the fact that many people, regardless of how well you know them, want to give you a kiss – not the European air-kiss kind – but a real one on the cheek. Then there are those (usually gentlemen) who want to give you a kiss on the mouth (eeuuu)! When the nurse warned me that I should be careful, even tho I wasn't at the point where I needed to wear a face mask, this was the first thing that I thought of – and with some relief because now I had an excuse to be avoid the kiss. This memory lasted as long as it took for me to leave the infusion center, have lunch and walk a block down the street.

This all reminded me of the Seinfeld episode where Jerry is annoyed at the fact that a woman keeps wanting to kiss him every time she sees him. He then notices how everyone in his building does the same thing – so he goes out of his way to avoid it – only to become an outcast for his unsocial behavior. I plan on working on the no-kiss, selective hand-shake rule – so if I appear stand-offish – I hope you understand.

I am looking forward to a much better week. We didn't make it to the boat yet, but still plan to get there!

Saturday, August 29, 2009

Ups and Downs

This is Thierry. We had a few turbulent days. Thursday was supposed to be Mary’s third chemo day in this series. When her blood work came back it showed a low white blood cell count and for that reason she was not given the Taxol and Carboplatin chemo infusions. They did give her a dose of Avastin, and two shots to raise her red and white blood counts. She’s had all this before, except the Neupogen shot, which is supposed to increase white blood cell production.

Thursday afternoon Mary “volunteered” me to hang a cabinet in her sister Jean’s kitchen and then have dinner there, so off we went to Jean’s house in Havertown. On the way up Mary started to feel unwell, and when we arrived at Jean’s house she went almost straight to bed. While I was hanging the cabinet, what was supposed to be dinner for just the three of us, ended up dinner for ten. Lauren and Mike went out to buy more food. When they came back, Mary was feeling worse, and she had a temperature of 102F. We gave her two Tylenols and I called the doctor who told me to take her to the emergency room at Jefferson. Lauren, Mike and I took her there, where she was almost immediately put in quarantine. They don’t take risks when someone has a fever and has a low blood count. We all had to wash our hands every time we entered or left her room, and we had to wear facemasks. They gave her an IV with anti-biotics and after a little while Mary started to feel better, and her temperature was down. Initial testing did not show signs of infection, and she was put on the list to be moved to a regular hospital room, once one became available. Mike and Lauren left around 9:30 and I went home an hour later.

Friday morning I went back to the hospital and Lauren joined us later. More testing, doctors visits, but nothing was found that could explain the fever. The oncologist did not believe that it was a reaction to the Neupogen but was more likely the result of her low white blood cell count.. As all her tests were negative and her fever down, she was released at 2:00 PM. Later that afternoon she started to feel unwell again, and her temp went up a bit, but not as high as the day before. She took some more Tylenol and later in the evening her temp was down to normal levels again, but she had no energy. I did some research on Neupogen and several sites listed fever as a possible side-effect.

This morning, Saturday, did not start well. She has no energy at all and feels somewhat nauseous. So I fill-in as reporter of the events of the last few days. I hope she will be back soon.

Tuesday, August 25, 2009


I read obituaries. Have been for quite a few years now. It started when I was still working for my former employer and former board members and business associates started passing away. Then friends and parents of friends began passing; people of note in the City, all creating a reason to check the obits on a regular basis in order to stay on top of what was happening, just as you would the business section or the “around the town” section.

When I read the obituaries I tend to focus on the ages; Anna P, age 90; Robert Jr., age 52; Louis J., age 69. However, not all obits include ages. Sometimes you can extrapolate from the information included: Robert, beloved husband of 47 years; Wilma, beloved wife of 55 years; Jacqueline, survived by 16 grandchildren and 10 great grandchildren – Whew!

Some list illnesses, some talk of sudden or tragic circumstances. Some are simple; some elaborate on the life of the person – I guess if you're really special you get a separate billing at the end of the regular death notices. When our dear friend and former boss passed, the obit was a simple two/three line heartfelt statement written by his children.

Last year when I was diagnosed with another tumor I started to look at the obituaries differently. I began to focus on those that died in their 50's and 60's, with dread. Since my last diagnosis my view has changed yet again. I actually find comfort in reading about those who have died in their 50's. I should tell you that my mantra is 5-years with mets (metastatic disease), which I created after talking to a woman who is still alive 4-years after being diagnosed with liver metastases. I really am focusing on living... reading obits is just some weird habit I got into. I tell myself I shouldn't read them, but can't seem to stop.

Some of you may remember those old “motivational” training programs where you were asked to think about or write your obituary; this in an attempt to stimulate you into action. By thinking about what you wanted people to say about you when you are dead, you would be incented to make some significant changes in your life – like taking up volunteer work; getting to the head of your class; running for office.

I am wondering if I should write my own obituary or leave it to my loved ones. I am so controlling, I'll probably write my own.

Have you thought about your obituary and how you would like it to read? It's not too late to change it - to start having fun, to break out of old routines, to start giving back.

Today was a wonderful day - just because we were alive.

Monday, August 24, 2009

Red at Night, Sailor's Delight

This is Mary as a redhead – okay so it's auburn! I call it my Raquel Welch do – to be worn when I want to be sassy (how's that for a word), or a throw-back to the 70's. I am calling it Raquel because she has a line of wigs and this looks like one of them – although this is not one of hers. This one is pretty neat in that the top looks like your scalp, so the part looks very natural.

The weekend ended up on a good note. We took C-Minor out and our friends came along. We cruised along the Bristol waterfront, then docked at The Wharf restaurant in Burlington for lunch. Bristol looked like it might have some charm, but, unfortunately, there are no landings or marinas in Bristol where we could tie up. The Wharf restaurant, which is only open until Labor Day, leaves much to be desired. It is an okay place to stop for a beer, but the food was not very good. The Delaware has stretches here and there of residences (some beautiful, large Victorian homes) and some wilderness, but mostly it is an industrial river, flanked by distribution centers and abandoned piers and warehouses, and very few places to tie up and go ashore.

I have felt pretty good this weekend, although I have been getting headaches in the morning and then again in the late afternoon. I understand this is a side affect of the chemo – luckily Tylenol takes care of them. I also feel pressure on my right side, which causes me concern. I trust the headaches and pains are not related – but again, will grill the doctor on Thursday. The treatment I receive this week will be the last of this cycle. I get a week off, then start the cycle of three again. With a little luck the pains are a sign the cancer is shrinking!

We are going to take Curlew out next week – Thierry will go down to the boat early to get rid of the cobwebs, load water and turn on the fridge. We're both looking forward to getting out on the Bay and into the fresh air – hopefully the humidity will all be gone by then.

It's been a good day, and I bid you all a good night.

Saturday, August 22, 2009

Old Gray Mare

This is my gray wig – for when I want to look conservative and mature – a bit prim perhaps – hopefully not too old. I just loved the fit. It feels good and actually looks pretty real. I have received two compliments from non-family members. One of whom thought it was my real hair and complimented me on my new do. So, I guess this do will do for a while!

It's been two days since my chemo treatment and I just got back from the gym, so I guess I am handling these treatments pretty well so far. I have noticed more of a chemical taste in my mouth, and I get occasional waves of nausea, but nothing constant. My weight is up, but I am concerned about my test results. My hemoglobin was down to 9.6. My white and red cell counts were also down, so they gave me a procrit shot to increase the red cell production. This should also help prevent fatigue. My blood pressure was especially low all week (80/50), so hopefully this will help. I see the doctor this Thursday so I will insist she go over all the blood test results with me. Everything changes each week, up or down a little and I don't have any idea what they mean. I don't want to focus on minor fluctuations, but I feel if I understand what is going on in my body I may be able to control it somehow....?

I am also pleased that my mood is good. Last Saturday I was an emotional wreck, so last night while lying in bed, I told myself that I would be in good frame of mind no matter how rotten I felt physically. Fortunately, I don't feel bad physically and my mood is good – maybe the pre-work helped. I find that I wear a very thin veneer these days, and if something little scratches the surface a very ugly and evil creature is revealed.

I haven't written every day because, well, for one, we've been pretty busy and two, I don't want to drone on about insignificant things and events. Friday we shopped in the morning and went to the PA Academy of Fine Arts in the afternoon. They had an exhibit of Hudson River artists – which was okay, but what we both found really interesting and enjoyable was the Elizabeth Osborne exhibit. She is a Philadelphia based artist, born in 1936, and is a PAFA faculty member. Her “birth” father, Paul Philipe Cret designed the master plan for the Benjamin Franklin Bridge. Her studio is on Front Street (not far from our home), and several of the paintings in the exhibit include depictions of the bridge. There were several that I thought would look nice in our condo. For all you locals, I highly recommend seeing this. I should be ashamed to admit that this was the first time Thierry and I had visited the new exhibit hall at the Academy, a beautiful contemporary design.

We later had dinner with neighbors. Today I had healing touch, lunch with Lauren at Mom and Dad's house, then the gym. Later we'll have dinner with our friends – we're trying Bindi, a modern Indian byob – I've been wanting to go there for a year now so hopefully it will be worth the wait.
It's been a good weekend, and we hope that trend will continue. You have a wonderful weekend as well!

Thursday, August 20, 2009

It's Not About the Chemo

Yesterday was a great hair day! Actually, it was a good one all around.

It started out a bit shaky, however. We left at 9:00 to go to Jersey to a wig place recommended by my hairdresser – you remember, the one who ruined my wig! We got there about 10 minutes early – I had a 9:30 appointment. I became concerned when I walked to the store front and noticed that one of the three large flower pots that were gracing the display windows was lying on its side (Thierry optimistically opined that it was probably due to the storms from the previous night). The store was closed (I thought it opened at 9:00) and they had a few wigs in the window. I peered inside and it appeared that the wigs in the window were the only ones they had, visible anyway. I got a very bad feeling...

We went back in the car giving Thierry an opportunity to test out the new wireless broadband card we purchased last week for the net-book – worked like a charm! At 9:30 I went back to the store. The door opened this time and I walked in. No one was there – there was an open shop area to the left, a narrow hallway to the right which looked as though it terminated into an office. I told Thierry to come into the store, and then explored a bit. I found that beyond the office was another hallway which opened into a larger room with 3 smaller rooms off to the sides. One was occupied with a woman and a man who was having his toupee shampooed – he was leaning back in a chair with his head in a sink, talking non-stop while she was shaking out the toupee. I tried making some noises, but no one noticed.

I walked back to the shop/display area and we looked around. The place had a bad smell, was dirty and dingy. The wigs looked old and all but two were blond. There were a few wigs in a box, but they weren't much better. After browsing for about five minutes I said to Thierry, let's get out of here! We got back into the car and we pulled open the computer so I could find the information for a wig place I had previously found on the Internet in Collegeville, Russell Lauren & Co. – actually very close to where Lauren is living. They have a very nice website by the way. I called and was able to get an appointment for 3:15 that afternoon.

We then made our way up the Morris Arboretum in Chestnut Hill, PA. Neither of us had been there before. What a treat! Again I am amazed at how much our City has to offer – in art, in music, in beauty. In addition to the overall aesthetics of the Arboretum, we thoroughly enjoyed their newest exhibit, the Tree Adventure. This exhibit which puts you up into the trees is very interesting architecturally – made of metal, rope and wood, the structure winds through the trees, and even has a large bird's nest made of twigs in one corner. If you haven't been to the Morris Arboretum, you must put this on your sites to see in Philadelphia list.

When we finished touring the Arboretum, we had lunch on the “Hill”, then left for Collegeville. Salvatore, the owner, took great care of us at the salon. He lost his wife a year go to ovarian cancer. I tried on about eight and walked out with two – both very different. We laughed a lot as I tried on the different styles and colors. This is a full style salon that also does hair replacement. Sal is an expert in styling the wigs. Since I have a petite crown, he had to cut and re-sew the two I picked out to fit better. Tomorrow I'll post pictures. I felt a lot better when I left – and I think Thierry is having some fun getting used to the “new” woman he has on his arm!

We went to Jean's for healing touch, had dinner – a big dinner with egg parm, spaghetti and meatballs at Primavera in Ardmore, showed off the 'dos at Mom and Dad's, and got home around 10:00.

It was a long day – but an excellent one!

Monday, August 17, 2009

Got to Get Moving

Thierry and I are currently discussing one of the not so nice side effects of chemo. I won't go into details here, but suffice it to say I need to add fiber to my diet.

Actually the last two days haven't been bad at all. Other than feeling tired and a little uncomfortable after stuffing myself before and during dinner(s), I've felt pretty good. Went for my Vitamin C infusion today. Decided that I will only have this once a week. These take 8 hours out of my week, and Thierry and I need to start doing stuff; like going to the Morris Arboretum to see the Out on a Limb Tree Adventure, or the Hudson School Exhibit at PAFA. When we were in London last year we visited Kew Gardens and they were building a tree-top exhibit – so it would be fun to see the one in Philadelphia. Actually I've never been to the Morris Arboretum – time to get moving!

We had a quiet dinner at mom's last night. Lauren made a wonderful fish recipe she found in Cook's Magazine. We picked up some Turbot, sliced up zucchini (that was the bottom layer), added the fish, chopped up tomatoes (the top layer), veggies had been tossed in olive oil, basil and I think oregano. The whole thing is baked in foil – it was wonderful. Today my friend Ann came over and made dinner for Thierry and me – a very healthful and delicious meal.

The conversation covered many topics, from healthcare to gun toting citizens. At one point they were discussing whether it is a better idea to take social security early, at normal retirement age, or later. I find myself quiet these days when subjects like this come up. I used to worry about outliving my savings, but something tells me I won't have to worry about this. I have made up my mind to think of ways to spend some of that money. Maybe a trip to Italy – albeit only a week (at a time) rather than for a month; a visit to Holland; to San Francisco to see Barbara and the boys; a weekend in New York – at a really nice hotel! Another trip to upstate NY with Lauren at our favorite Inn. Maybe another trip to Paris – with Thierry this time – I love Paris.

Yesterday and today were good days – I hope there are a lot more!

Saturday, August 15, 2009

Sour Saturday

Today was a very bad hair day. It began when I took my shower and the little nubs remaining from my shave fell out. For a while it looked like it was growing a bit. Yes, I knew it would eventually all fall out, so I really don't know why it bothered me.

I took a good long look at my face and head in the mirror after my shower. Without your crowning glory it is hard not to notice things – like big ears – dark circles around your eyes – just how big (and droopy) your eyes are. You notice how your nose looks. Do men think about these things or is it just women who lose their hair that obsess?

For years I never really looked at myself in the mirror. When I was a kid, my mother used to have my hair cut in a very dorky, short haircut – with bangs that just barely hit my forehead. I was called bird by my mean older siblings. I always hated that haircut – but have to admit that I hated the nickname even more.

As I grew, my nose also grew. Falling at the playground and smashing my nose didn't help. It was a true Tiny Tim schnoz. I grew my hair and let it go curly and hid behind my mane. I never looked at my profile in the mirror. All through high school I had a mouthful of braces. Big hair, big nose, heavy metal. When I did look at myself I envisioned someone else.

My opinion about my looks changed dramatically when I had my nose job at age 27. I had a beautiful daughter, a good nose – and I had lost a lot of weight – I rocked. For most of my 30's, 40's and 50's I have been happy with the way I've looked, hair included.

I took the wigs to my hairdresser today – the one I wasn't crazy about – is even worse. The other is okay. We got the name of a good wig man – we'll go this week. I'll splurge for a good one – a real hair one.

As you may have guessed, I'm feeling droopy today. Not sick like the last time, just a bit down. Yesterday was actually a very good day. Friends came to visit and we had a nice lunch at Darlings in the Piazza in Northern Liberties. Thierry and I went to the gym and worked out a bit, then met up with Lauren and Mike at Yang Ming for dinner. We went to the movies where we met up with Jean and Mariela and saw Julia & Julie – which we thoroughly enjoyed. Meryl Streep is once again, amazing. Afterward we went to the Grog for drinks (I sipping my club and lime). Got home very late.... 11:00, then off to bed. It's fun going out with your adult child – we always have a good time!

Tonight we'll catch up on past episodes of Mad Men – tomorrow starts the new season.

Yesterday was a really good day – today is getting better.

Thursday, August 13, 2009

Chemo Thursday, Treatment #2

It's 8:45 pm and I am feeling very perky right now, unlike this afternoon. My treatment includes other drugs and supplements in addition to the three chemo drugs. Via IV, I receive a shot of Pepcid and a shot of Benadryl. The Benadryl hit me like a brick so after we had lunch, I meditated a bit and dozed for about an hour or so. Lauren and Ann were visiting (each other – since I was out), Thierry went home to chill and work out. We had arrived at the infusion center at 8:20 after eating our power breakfast, saw the doctor around 10:00, and the infusions began around 11:30. I was home by 4:00, which I guess is pretty good. Next week should be even shorter, I will not see the doctor, nor will I get the Avastin – that alone saves me an hour.

Susie (friend and neighbor) reviewed my blood test results with me. She said the liver tests were much improved; however my protein levels are down – so I'm back to 2-3 whey drinks a day, in addition to adding some other sources of protein. The doctor told me today that now is the time to EAT! As I type those words I envision a big round face with mouth open exposing wide large sharks teeth – oh and it has big pointy ears as well. I actually gained another 3 lbs. this week - ate a hamburger (ick - won't do that again too soon) and had lamb one night for dinner!!

I have started to read “Joe Speedboat” by Tommy Wieringa, a Dutchman. Our friend Jeannine from Amsterdam sent it to me – translated into English, of course. It is a good, easy read. Very entertaining. The story of Joe is told by Frankie, who emerges from a coma – unable to walk and talk and has limited use of his limbs. I'll keep you posted.

I received a lovely gift today. Our dear friend Doris is an extremely talented artist. Her paintings are exhibited in Old City, at the shore, in Delaware and places around the Main Line. She has won many awards for her works, and we have several in our home. She painted a lovely picture of Gladiolas in a vase, for me. Like all of her work, it is amazing and I love it.

I am so blessed to be surrounded by such caring, loving people. Life is good, my life is great! Today was a great day.

Wednesday, August 12, 2009

Life is a Beach

While I am writing, I am receiving my Vitamin C infusion at Jefferson Hospital. It is Wednesday afternoon – still hot and sticky outside – but like a freezer in here. Thierry and I spent the last few days in Rehoboth Beach DE at our friends' house (Susie and Susan kindly offered us their lovely retreat). It was great to have a change of scenery, and to feel normal once again. We ate out the entire time (B, L & D), walked the beach, visited Lewes and took a trolley tour, and shopped at a few of the outlets. We had two great dinners, at Lupo de Mare and Blue Moon and I ate gelato for the first time (and then had it again the next night), it was wonderful! Thierry and I wandered into a candy store that advertized liquorice from different countries – and he found an incredible variety of Dutch drop or liquorice – and of a different variety than they have here at the Reading Terminal Market. He was very happy.

When last I wrote I mentioned that we were having dinner at Lauren and Mike's new house. There were 22, counting the kids – their house can handle the crowd. We had spaghetti and meatballs (that Lauren made), and sausage and peppers that Ed, Mike's brother, made. Joan made garlic bread, Jean made the salad, Ann brought snacks, I made guacamole using habanero's from Ed's garden, mom and I brought dessert – it was quite a party. We decided we'd let Ed into the Taraborelli kitchen – he is a good and adventurous cook!

For years it seemed our home in Gulph Mills was the center of family functions. We were centrally located; had good party space; we invited both sides of the family so no one felt left out; and both Doug and I loved to cook – especially for big crowds. Christmas was always at our house – Christmas Eve for friends and family; Christmas dinner for family. We often had 14 people around the dining room table with more in the kitchen. When we weren't supping with family, we had friends over. We held our annual Hill House party for over 100 people; gourmet New Year's Eve dinners; Memorial Day lobster and seafood party, and father's day barbecues.

When I moved from Gulph Mills and into Philly, I held onto part of the Christmas tradition. Since we moved to Philly, the family seems less interested in coming to our house for dinners, hence Sunday dinner at mom's. Entertaining in general has become less frequent, although Thierry and I love to entertain and share our view of the fireworks on New Year's Eve and around the 4th of July.

At first I was glad to shed some of the entertaining duties, especially when Ann had Christmas Eve at her house. But I have to say you also have to shed some of your pride to be able to step down and pass the baton! I guess it's Lauren and Mike's turn to start new family traditions. I marvel at Lauren's ability to take on a houseful of guests the same weekend she moved to her new home. I know family is extremely important to both her and Mike. I know that they will be able to keep our families together and build a loving community around their home. I hope I can can make a smooth transition into the role of a supporter and cheerleader for Lauren and gracefully take a step back as she takes on her role of keeper of the family traditions.

Today the wigs came in, I think I'll keep both. They are much lighter than the wigs of old, and feel extremely soft considering they are not made with real hair. They should look pretty good once the hairdresser takes a whack at 'em.

Tomorrow is chemo day. I am hoping it will be less toxic than the last, since the dosage will be less (we are starting the weekly treatment regimen). I am prepared – I think; I went to Jean's for healing touch this evening. My friend Ann and Lauren will stop by for a bit – which will give Thierry a break. And, I am taking my own personal chemo bag with me. Ed's wife Patty is a truly talented, creative woman. I understand she paints, but she also sews. She made us all aprons around the holidays – made from patches of different fabrics – they are terrific. When I saw her on Sunday she presented me with a fabric bag (with draw-string shoulder straps). Inside was a coverlet and a head rest. I can't wait until others at the infusion center see this! Patty, you must market these – I'll help.

It has been a good week – I'm looking forward to a good weekend. Keep your fingers crossed!

Saturday, August 8, 2009

A Wonderful Weekend

It's Saturday night and I am at my sister Jean's house, relaxing, and where I'm spending the night. We had a wonderful dinner, she performed healing touch on me and we just ate watermelon (Mmmm).

Yesterday Lauren and Mike moved into their new home. I spent the day with her(them), and we were able to put the kitchen together. Jean came up and helped as well, and Mike's dad was there a good part of the day I got home late, but slept well! Today we went back up, moved some more “stuff”. Joan and Jean were there and together we were able to get the kitchen, family room and dining room in order, as well as part of the bar. I think someone said Mike has even more glasses in addition to the several boxes they unpacked (he has quite a collection of beer mugs, glasses, shot glasses, etc.). Lauren and Mike have a beautiful home, with tons of space – and which was designed for parties. I am sure they will keep it full of friends and family. As it goes, we'll all be there for Sunday dinner tomorrow.

It was fun to watch Lauren as she walked around her (their) house, so excited, and looking in the cabinets saying “this is my house, I love my house.” It gives me great joy to see her so happy, and I trust that she and Mike will have a good life together. Lauren has always worked very hard and does so much for me and the rest of her family – she deserves to be ex-tactically happy.

For a good part of these two days I have been able to act normal and like a living person. The days weren't without some discomfort. Again, when I get stressed, I seem to feel more discomfort under my ribs, and toward my back. It seems to happen around the same time every morning, and sometimes in the evening. I tell myself it's my liver healing – I've been doing some serious visualization every day – shrinking and killing the tumors. Dr. Gupta commented that the liver seemed a bit enlarged – which he said was to be expected, and, as Dr. Goldstein said,now is the time to enjoy life and DO things, so I guess I better get started.

BUT, my energy has been pretty high, I guess most of the effects of the chemo are gone. I have even been be-boppin to music in the car; and let me tell you, it felt so good to sing along with Blondie - blaring - at the top of my lungs! I could actually feel the endorphins building. I have been thinking for a while that I need to listen to some good old rock and dance around the house – loosen up. So, one goal for this coming week is to go on I-Tunes and download some good oldies that I can dance to (I'll spare Thierry my singing... well, maybe). Oh, and some ABBA. Actually, I think just getting out and concentrating on some activity – something physical – was good for my psyche.

Now tomorrow, peppers 'n eggs and home fries for breakfast with Mom and Dad, Thierry comes home, then dinner with the family – life doesn't get much better! I've had a couple of great days and look forward to another tomorrow

Thursday, August 6, 2009

Suddenly its Thursday

Times flies. A cliche, yes, but sometimes very true. Lately I've been thinking I'd like to sloooow things down - some things. Like when the day is over and I spent half of it being gloomy and short-tempered. Then I perk up and its after dinner and I wish the night wouldn't end. Then there are some events that can't come fast enough - like my next treatment (Ick, I know, but I am anxious to get this show on the road - no matter how shitty I feel). I also think about the break between my treatments - and hoping I'll feel well enough so Thierry and I can go somewhere.

I know, live in the moment - I've been trying to practice this. Especially when I am doing mundane things. Instead of letting my mind wander all over the place -thinking about treatments, vacations, getting a wig - I try to catch myself and think about what I am doing, where I am walking, enjoying the scenery and what's going on around me, using the time to blank out.

Well, about yesterday. We paid a visit to Fox Chase (Philadelphia's cancer center) and I saw a Dr. Gupta (not Sanje) and Dr. Lori Goldstein. They basically confirmed that the treatment I am receiving is the first line of treatment for recurrent BC. Generally, carboplatin is not included, however, they could understand why Dr. Mitchell would add this to my treatment plan - hitting it hard in the beginning. They do not have any trials going on at this time that I could enter. She did tell me about a trial going on now at Penn, which I probably could not enter since I just started treatment. Penn is evaluating PARP inhibitors (I don't know all the details). These are drugs that have shown very promising results in fighting triple negative breast cancers. This is a Phase II trial, where they test the drugs safety and efficacy. The drug would then have to go to Phase III, then onto the FDA (most likely) for approval. This would be something that I would like to plug into - we'll see what happens.

We then went to my sister's house. What an event that turned out to be. Father Gus joined us and Jean had also invited Father Kevin - who wasn't sure he could come. Lauren made a super fruit salad, while Jean prepared chicken, the Spanish way. She lightly floured and browned the chicken (in a little olive oil). I believe she removed the chicken from the pan (Jean you'll have to jump in here). At some point she added tons of garlic, bay leaf and dried red peppers, chicken stock and brandy. She put the chicken back into the pan and let it all cook together. After we finished my sister Ann and her fiance, Juan, came over and joined the table - and then Father Kevin came. Let me tell you, it was all so good there wasn't an ounce of anything left! Not even the sauce. We went through an entire French baguette sopping it all up! We had a good time. I haven't laughed in a while, but did last night.

After dinner, Jean shaved my head. Thierry wanted to take a picture, but I wasn't up for it. I thought it would be easier this time, but it was actually more difficult to deal with - I think that surprised me. I truly believe my ears are bigger now than they were in '05! Maybe it's because I am thinner.... maybe it's because I'm older and they've grown; but I feel like I look like Nosferatu! I guess I'll get used to it - I really don't think I'll have any choice.

I walked a lot today - about 60 city blocks altogether. I looked at wigs at Jeff - they'll give me a free one. If I like either of the 2 I picked out - I'll take it to my hairdresser for a trim. I did wear my new hat today, and really felt pretty fine in it. I went to lunch with my friends and neighbors (Barbara and Faye) - and again laughed and thoroughly enjoyed their company.

Ann came and we worked for a few hours - I cooked dinner - stuffed peppers - and now I am relaxing in front of the TV. Thierry is in Maryland - he took C-Minor down and will return on Sunday. Lauren and Mike move to her their house tomorrow so I'll spend time with them - supervising, of course!

My writing over the next few days may be sporadic, depending on how busy we are and how fast the day goes. And I hope all of the good days, like yesterday and today - and all the partially good days go very slowly!

Tuesday, August 4, 2009

Touchy Tuesday

My hair started to fall out this morning. I had asked the doctor when to expect it, and she just shook her head. When I started the adriamycin back in '05, they told me 14 days. My treatment was on the 23 of July, 12 days today. Thierry doesn't have the heart to shave my head, so we'll go tomorrow to my sister's after our visit to Fox Chase, and like the last time, she'll do the deed.

Admittedly, it dragged my mood down a bit. I knew it would happen. I just pray my eyebrows stay on – they did the last time. Actually, what bothered me most the last time was losing my eyelashes. Maybe this time I'll buy some false ones! They look pretty good today – very natural. I had little individual false ones on at Lauren's wedding. This time I'll go for the whole set. I pulled my wig out of the closet to find the back looks like it was singed?? Guess I'll have to get out quickly to find another. Maybe I'll find one with gray in it – or maybe I'll go red.

I consulted my oracle this morning and pulled three Runes – before my shower and mass of hair appeared in my hands. The instructions say you are to pose an issue, not ask a question. My issue was this: I have a difficult journey ahead (will I be able to deal with it). The Runes I pulled were similar to those I pulled before: life goes through cycles, one phase of life closes and another opens; when in deep water, become a diver (I think that is a good one); there are limitations we put on ourselves; now is the time to mend and restore myself; now is the time for regeneration – down to the cellular level. I am not sure how one goes about this internalizing and soul searching, but I am leaving myself open to whatever!

We had an appointment with the genetic testing people today. In 2005 I was tested for BRCA1 and BRCA2 (the breast/ovarian cancer genes that they had identified at that time). The results were negative. Apparently in recent years the test has been expanded to identify other areas in the DNA that increases the accuracy of the test from 90% to 98%. There are currently some Phase II drug trials in progress that target cancers that are BRCA1 receptive which have had very positive results. But the nurse was having difficulty drawing blood, so I suggested we have the blood drawn at the oncologist office when I go for my treatment next week. She readily agreed. Once tested – it will take about 3 weeks to get the results. My clock is ticking....

I have to evaluate whether I should continue with the Vitamin-C infusions. They take 4 hours. If I go twice a week, that is8 hours plus 8 when I go for chemo, or 16 hours a week spent inside, plugged into an IV. I am told that the Vit-C should give me more energy and help boost my immune system. I don't detect an increase in energy – and sometimes the infusions make me feel light-headed. The nurses tell me to graze (snack frequently) while I am being infused – which I did today. It helped a bit. I may continue until my cycle of chemo is completed and I am retested. I am still on the fence here.

The moon is beautiful this evening – 99% full! It is a pinkish color, and looks incredible against its deep bluish background.

This morining I was very blue and apprehensive. Today was not an easy day – but still a good one.

Sunday, August 2, 2009

All Saints Sunday

This morning we went to Mass at St. Peter's Church in Philadelphia. The we being me, my two sisters and friend Ann. The shrine of St. John Neumann is located at St. Peter's. In my purse were holy cards, one of St. Peregrine that was given to my by Juan. This was passed along to him by a co-worker who had cancer that went into remission. Juan just finished treatments and surgery for stomach cancer. Apparently Juan was the fourth recipient of the card. The other is a card that our friend, Mariela, Fed-X'd from Columbia. It is of the Holy Infant - whose shrine is located in her hometown. I had a St. Agatha medal around my neck; however I had left my John Neumann relic at home (I had been moving him from one pants pocket to another - he is a little big). I was pretty well armed.

Father Kevin started his sermon by noting how the crowds were anxious for more miracles, and were hesitant to commit their faith until they saw results. His sermon addressed a lot more, but I have to admit I felt somewhat hypocritical being there - having not been in a church with any regularity - and very little over the last few years. After mass, when Father Kevin gave me a blessing, I choked out my feelings (it was a very emotional moment). He assured me that God was not offended in the least by my presence and prayers for health. He commented that God is there for those who are in need and in pain.

When we left I felt less hypocritical, and have decided to focus my prayers on God (the ultimate being, energy, force, power), on all the spirits, saints, angels, energies, forces that are out there, including those that reside within me. I am starting to believe that I am worthy.

I should tell you that I started the day consulting with my personal oracle by randomly selecting Runes from a sack, and interpreting the symbols in "The Book of Runes: A Handbook for the Use of an Ancient Oracle: The Viking Runes".

"Runes are an ancient Germanic alphabet, used for writing, divination and magic. They were used throughout northern Europe, Scandinavia, the British Isles, and Iceland from about 100 B.C.E. to 1600 C.E. Runic inscriptions of great age have even been found in North America, supporting stories that the Vikings arrived in the Americas long before Columbus." (taken from

Runes are an oracle from which one seeks advice. What I learned from the Internet is that you are supposed to detail your current circumstances and then ask a specific question. Rune readings are somewhat obscure, and supposedly hint toward answers. I'll have to do a bit more research on Runes and their interpretation, but my first pull brought me the following:

Warrior Energy (looks like an arrow): Journey, Communication, Union, Reunion (Looks like and R): and a Blank - representing the beginning and the end (this one scared me a little). I am not sure what the lessons here are - but in short - they tell me to look within to delve down to the foundations of my life; that I am on a journey of self healing, change and union; and that obstacles can be gateways that lead to new beginnings.

It is now Monday afternoon and I am just finishing yesterday's blog. The day was a busy one. The church group went to breakfast and watched as a wild storm swept through the city. TD and I worked out at the gym, albeit briefly, then went to mom's for dinner. Joan made spaghetti and shrimp - it was terrific. We played a three-sided domino-type game Jean brought back from Tenerife (using the German rules), and got home later than usual.

I went for another Vitamin C infusion today. Also received a call from my oncologist who assured me the treatment was "an accepted treatment protocol" and necessary due to obstacles thrown into the fray by the insurance company. We leave in 10 minutes to have dinner at our friend Jeanne's house - where I know we'll laugh a lot as well as have a great meal!

Thanks to everyone who commented on my blog yesterday! I hope you all had an opportunity to read through them - there are some great thoughts there.

Yesterday and today were terrific days!

Saturday, August 1, 2009

Soul Searching Saturday

First I have to say how thrilled I am that we can post pictures. We'll see how this works - this being the first, but blogger makes it easy to do with Picasa (all google products). This is a picture of Hermione, the orchid that our neighbor Suzie brought to us the other day. This is the first house plant (other than maybe a poinsettia) that we have had since we moved to Philadelphia. It is difficult to maintain houseplants when you're not home very often. We have tried some plants on the balcony, but alas, they don't last very long. Hermione puts a smile on my face everyday. (Photography by Thierry)

Today started with a bang! While Thierry was showering, I was cleaning the guest bathroom! We had breakfast and I left a little after 10 to go to my sister's for a healing touch session. It was great to spend time with her. We talked a bit about god and an afterlife. This is something I have been thinking about a lot lately - but I've always thought about these things.

Being raised Catholic, I never had any connection or affinity to the church or the religion. I won't go into the reasons, it just never stuck - it never felt comforting to me, like a place I could go to for peace or answers. We spent time in the Lutheran Church where at least I felt a connection to a community. The Lutheran's are very accepting of a person's beliefs. What are mine? I guess I believe in a higher presence or being. I don't believe in heaven or hell, but want to believe that things just don't end when we die; that the spirit lives on - and in a way I can see the possibility of reincarnation.

One of the reasons I can believe in reincarnation is because on several occasions I have met people where there has been such a strong positive or negative reaction within minutes of our meeting. A shake of the hand, a hug, can send such a surge of energy or repulsion that it causes you to pause, maybe even shiver and ask what was that about!? I remember the first time I met Doug, I had this sensation that I had known him before (altho hadn't ever seen him before) - and ended up marrying him. I feel an unusual connection with my daughter - this may be a normal mother/daughter thing - but the link is so strong I have to wonder. I feel a strong link to my friend Barbara, who I've known almost my whole life - and no matter how far apart we are, we still stay connected. This has happened to me so often in my life, with people who have played such a pivotal role in my growth and development.

When Jean was performing healing touch on me today I felt another very strong connection. I felt like she was actually transferring energy, healing energy to me. But more than that I felt at peace being with her and found great comfort in the realization that I was with someone that I had known for a very long time - beyond this lifetime.

I told Jean that I was concerned that my attitude (in the past) had an impact on my health. That being a fatalist (always thinking in the back of my mind since 05 that this may get me), rather than someone who deeply, inherently believed that they could overcome a disease such as this, has had a hand in this. Now, if someone said to me, I am sick because it is God's will I would say - I really don't think God had anything to do with it.

I really don't want to be one of those people - who blames a god, themselves or some other bizarre factor for their illness or life burden. I will be spending a lot of time soul searching and working on my mental - as well as spiritual health.

TD and I are going to escape for a few hours and see the new Harry Potter movie. Tomorrow I'll go to St. Peter's Shrine with Jean and my friend Ann, and try pick up good energy from the various forces at work there.

Today continues to be a very good day, and I look forward to what awaits me tomorrow.

PS: I'd love to know where you find comfort.

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