Tuesday, April 26, 2011

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.

Monday, April 18, 2011

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.

Tuesday, April 12, 2011

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.

Tuesday, April 5, 2011

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 15th 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.