Sunday, February 27, 2005

I have been waiting for a good day to “blog” – a day when I feel optimistic about the future, excited about the “new day”. It has been long in coming and I’m still waiting. This chemo has been wearing me down gradually – especially the 2 week cycles where it hardly seems as if I can catch my breath and enjoy a few days of relative “normalcy” before it all starts again. On the good side, I have not been hospitalized with these regimens as I was back last April/ May. Still, this week has been particularly demoralizing for me. I had a new regimen of Avastin/ 5-FU 48 hr drip on Tuesday – still a 4 hr affair for all the infusions. Karl and Stacy and their 3 children arrived the same day (Karl was attending the annual conference of Orthopedic Surgeons held in the Washington Convention Center). I was ecstatic and we had a good night together Tuesday and then a glorious and unexpectedly good day (for one day post-chemo) on Wednesday taking the kids to the Spy Museum and the Natural History Museum and the T-Rex I-Max production. Then I had to pay the price Wednesday night with a terrible bout of intestinal cramps and hours of violent vomiting (my doctors think possibly again to a partial intestinal obstruction and not the chemo) which lasted through Thursday and some of Friday morning. However, that couldn’t stop me from having a wonderful time baking cookies with the grandchildren on Friday afternoon to let Karl, Stacy and Bob enjoy a lunch “downtown” and tour Bob’s majestic office on 19th and Pennsylvania Avenue. But then, just as I thought that I was emerging from all of my troubles, I got a sore throat, cough, and fever which put me in the Georgetown ER for about 4 hrs this morning. The good news is that the Neulastin still has my neutrophils level pumped up to the point where I was able to come home with oral antibiotics. Nonetheless, this whole cycle has me quite down. My usual optimism is flagging and will take a few days of feeling like “me” to come back. But then I still am crazy enough to assume that it WILL come back.

Tuesday, February 15, 2005

Off we go into the great blue yonder….As you might have surmised from my last blog, this last round of chemo was extremely difficult for me mentally. I have finally decided that the root of the problem is that last April/May I was cheerfully able to endure any problems just to be alive. If I could go to work or do anything useful, I was triumphant, regardless of how I felt. Now, having experienced a glorious remission of sorts on the immunotherapy protocol and return to full functionality both mentally and physically, I find that the debilitating effects of the chemotherapy are more difficult for me to accept. I have been so tired that I cannot muster up an intelligent thought, and even if I manage to haul myself to the Y to exercise, it’s then all I can do to get up the steps to go home. This has been very tough for me to handle, given that I have always been so active physically and so “multi-tasking” mentally.

So today, after about 5 days of non-stop arguments with myself, I had finally steeled myself for a final fourth round of chemo. I was at last comfortable with my reasoning and convinced that it was the right way to go. But the body said NO. All of my blood counts were so suppressed today that I was unable to undergo treatment. So bingo –my arguments flew out the window. Now Dr. Marshall is proposing to do two rounds of Avastin (a monoclonal antibody directed against VEGF and angiogenic agent) and 5-FU starting next Tuesday. This regimen has proven effective in prolonging disease-free progression and survival in advanced colon cancer. I’m still a little ambivalent about whether this is going to be the best thing to do in the 5 weeks remaining before my Keystone meeting/ San Diego trip/ visit with the kids, but I’m sure that we will work out the details before then.

Meanwhile – life is good. We had an incredible afternoon/evening with Dorrie and Jeff on Saturday the highlight of which was a concert by the King’s Singers in the Kennedy Center. And the real kicker was hearing them sing “You are the New Day” as an encore. This song has been my mantra since the beginning of this saga. The last verse goes:

Hope is my philosophy
Just needs days in which to be
Love of life means hope for me
You are the new day

Tuesday, February 01, 2005

One angry lady…. Today was my third chemo infusion. By the time the whole sequence was over, we had spent 6 hr in infusion - 6 hr during which I had to control my emotions and not scream in anger or punt and pull the needle out of my port. I haven’t figured out why, but it is becoming increasingly difficult for me to sit there passively. And yet, I truly believe that this is the best treatment course available to me at the present time. Further, I know that it will end sometime and that I will experience the joy of the recovery phase. Still I was very angry today – first the anzemet (anti-emetic), then decodron (upper), then epirubicin (bright red – scary), then the oxaliplatin (already has started freezing my fingers into locked configurations and contracting my eyeballs such that it even hurts too much to cry), then leucovorin, and finally 5-FU. Dr. Marshall is trying a 48 hr 5-FU infusion in the hopes that it will be less toxic to me than the week on Xeloda. But meanwhile I feel like a Swiss cow with this infusion pump hanging around my neck with its soft beep, beep, beep every 4 seconds to tell me that it is alive and well! And finally, because my hematocrit continues to fall (as expectedly, have all other components of my blood), I got an injection of Aranesp (Amgen’s version of an erythropoietin relative). For a woman who has probably taken only 3 or 4 prescription drugs in the past 20 years, this was just a little hard to handle today. I’m not complaining, just venting!!! So now I am unhooked (except for the pump) and “free to roam about the cabin” filled up to the eyeballs with poisons! Oh joy!

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