Thursday, January 27, 2005

Oh the wonderful new experiences this disease has in store for me. Yesterday I had a “therapeutic” paracentisis, which means that they drained my ascites fluid to make me more comfortable. Unbeliveably, the nurse told me, "we usually see patients like you every 4 weeks, then every 2 weeks, then every week and then..." That was enough to convince me that she would not see me again in 4 weeks, even if that meant that I would explode! For the first two liters drained off, I watched my belly deflate and I felt better and better, but then for the next 1 ½ liters I started feeling as if my innards were being sucked out. I lost 7.5 lbs and almost 4 inches in my waist in a matter of about 20 min. That started the weird feelings from which I am just now beginning to “re-normalize”. First I had a lot of pain in breathing, probably because my diaphragm which had been pressed upwards by the ascites was likely then sucked downwards. Then – and all day today – I have felt absolutely starved, except that I could not eat enough to satisfy the hunger. Again, it was probably signals from a stomach that was no longer squashed by the pressure of the ascites. It got so bad in the lab today that I just couldn’t think and came home for an hour to try to eat more. Finally tonight I am starting to feel better. Now I’m going to plot increases in my weight versus my waist and hope that I can increase the former while the chemo suppresses the latter. Of course, the chemo does its work on my weight too, so this may not be as informative as I hope.

The exciting news is that the nurse let me tuck a liter of ascites into my backpack to take back to the lab and Seong-Jin Kim is trying to culture out some cells. I wish I had got some “pre-chemo” ascites, but maybe we’ll be lucky anyway.

Monday, January 24, 2005

Hair we go again……My hair is dropping off my head at an astounding rate and making a mess of everything. If I didn’t need it to keep warm, I would simply bite the bullet and shave it all off tonight. It’s going to be more difficult to be hairless in the cold of winter compared to last spring – I’m going to freeze my brain! Now it will be at least another 8 or 9 months before I can think about a haircut! But I guess that will be something to look forward to.

Saturday, January 22, 2005

Today I am slowly returning to some semblance of “me” after the second round of chemo. I handled the nausea much better this time by being very careful to keep drugged up with anti-emetics, but I just don’t feel good. I still tire very easily and find it hard to get much accomplished. And, much as I love to be outdoors, I simply cannot tolerate the cold. The cold neuropathy from oxaliplatin causes my hands to tingle and freezes my face muscles so that I can’t smile or talk. But I took care of my doldrums in a wonderful way that moved my mind out of my body and into another world. I decided to start updating my Ipod. Oh such fun. I literally went from Bach to Beatles to Simon and Garfunkel to Wagner, Dvorak, Brahms, to my beloved King’s Singers to all sorts of my favorite odd-ball folk singers. I played various bands as I loaded the CDs and let the music envelop me and take me back to wonderful memories or just to simple enjoyment of the moment. It made the day very special.

Monday, January 17, 2005

Ready to go again….Chemotherapy cycles are called that because the “cycle” is for me the most prominent feature. I get depressed when I am feeling my worst. My horizons shrink and I can’t seem to project ahead. Besides the effects of the initial infusions, the Xeloda is still my nemesis, destroying my appetite and just generally making me feel uncomfortable and queasy. But underneath it all, I am always hoping that the next day will be better. And when, inevitably, the next day actually does get better, my spirits soar like a kite that just got a lift of wind and goes dancing through the sky with unbounded joy. Today is one of those days. After a weekend battling unexpected bouts of nausea I am having a very good day. To celebrate, on the way home from the beach I even ate a bacon cheese burger at Ruby Tuesday to satisfy an unexpected appetite and desire for “real food”. Now I am sufficiently filled with optimism about the future to be ready to again be knocked down tomorrow with another “cycle”. As long as these “cycles” continue to begin and end on high points, I know that I am on the right track for the future.

Tuesday, January 04, 2005

Hope springs eternal. We had had a most upbeat meeting with Dr. Marshall today. He appeared very optimistic that the ascites can be controlled and has put me on a 2-week cycle of the same drugs as previously – oxaliplatin, epirubicin, and Xeloda, with the thought that alternate weeks on and off the Xeloda (my favorite pink pill) will reduce the toxic effects. After that, he suggested that he has a large arsenal of exciting new drugs that we might try. So I got through the 4 hour infusion today feeling extremely upbeat and visualizing the poisons zapping those errant tumor cells that are happily swimming around in my ascites. It’s astounding how little things that are said and observed can change your entire perspective – and in this case our perspective again has a sunrise on future horizons.

Sunday, January 02, 2005

As per tradition, we heralded in the New Year by watching the sun rise over the ocean. The water was calm with several loons swimming peacefully. Bob and I each made our personal vows to be strong in facing whatever the new year brings. I have not felt good over the weekend – my stomach has been very problematic. Hopefully it’s just the stress of the present situation.

Bumps in the road. So far this journey has led to places and events we wouldn’t have dreamed about on that emotional walk that Greg, Karl and I took through the labyrinth at St. Lukes Church 4 days after my surgery and diagnosis last March. At that time we read the inscription, “Surrender to the journey with an open heart and mind”, and were not at all sure how long we might be on the road. But since July, when I enrolled in the NCI immunotherapy trial, the road has been rather smooth and easy to travel. It took me to Kathy’s wedding and brought me to an almost overpowering and joyous sense of well-being that carried me through two wonderful weeks at the beach with our grandchildren, and through our great Thanksgiving fest. Now we’re into some bumpy terrain. Even before Thanksgiving, I had a sense that I was losing ground with this disease, but nothing significant showed on either the ultrasound or the CT scans. However, in December it was clear that undesirable changes were occurring and an ultrasound just before Christmas showed a “significant” amount of ascites fluid in my belly and an enlarged kidney. The ascites made me very uncomfortable. The Monday after Christmas was a rather traumatic one with a renal function test (the doctors learned never to give me 40 mg of Lasix unless they have a mop and bucket handy!) and paracentesis to remove 2 liters of the ascites (it came out like a good German Weizen beer “vom fass”). I lost 7 lbs in 1 hour! Unfortunately, but not unexpectedly, the analysis showed that my ascites is malignant, containing signet ring cells. This now disqualifies me from continuation on the trial and puts me into new terrain.

On Tuesday I will again see Dr. Marshall at the Lombardi Cancer Center and the present plan is to start that day with the same chemotherapy that I responded to initially – oxaliplatin, epirubicin, and Xeloda. So now I’ve got to steel my mind to the task. I’ve had many strong emotional swings in the past few days. My immediate reaction to getting back to a more aggressive approach was very positive since I knew that I was losing ground with the immunotherapy. Then I felt scared because I’m not sure how far the pendulum can swing in one direction and still come back to the equilibrium point. Then, in talking to people and putting on a brave front, I actually had a huge letdown. Part of this comes from thinking that I have let people down. I could see it in their eyes that this setback dashed their hopes and ruined their dreams. I had been feeling and looking so well that many people naively decided that I had the odds “beat”. But I had never thought that I could defeat this cancer. I had just hoped that I could keep the process in check as long as possible. Now that equilibrium has been disturbed. I am presently at the beach trying to get psyched up for the battle ahead. I know that I am stronger both physically and mentally than I was when I started chemotherapy 3 weeks after my surgery last March, but my ability to keep my spirits high is going to depend, in part, on whether we can control the ascites. And then too, when I talk to the ocean, I know that it also has an evil side that can snuff out hundreds of thousands of lives at will. Still I hope that its power will give me strength.

So we start inning number three. I’m not sure what the score ended up in the second inning, but it was fun to play. Meanwhile, I will try to stay on the winning side!

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