Monday, June 28, 2004

What a celebration of life! Never in the throes of our “March madness” would we have envisioned having such a wonderful beach weekend together. I am getting back to post-chemo normalcy with a vengeance and a fierce determination. My only reminder of the past is when I look in the mirror and see my 300 or so remaining quiescent hair follicles and my BIG ears – in 62 years of having hair, I never noticed what big ears I have, but maybe that’s why my hearing is so acute! We have started each day with a 6 mile walk/run on the beach and tonight will finish with a short 2 miler to make it an even 20 miles for the 3 days. I’m up to 300 steps running – comfortably – when last weekend I could barely do 100 and felt as if my knees would collapse on every step. There’s something about running barefoot in the licks of the ocean waves that puts me on a high. We have seen dolphins frolicking in the surf and pelicans zooming down for deadly aim on their lunch. Even Kiara (our golden retriever) has overcome her fear of the waves – instilled after getting badly tumbled in a stormy ocean last summer – and is back to retrieving sticks with a new awareness of when to turn around so that the wave hits her in the back and she can ride it in. We have dined on our favorite crabs – softshells, cream of crab soup, and crabcakes, all in one weekend – while sitting on the porch watching the boats go by in the canal. The weather has been unseasonably cool and dry with sunny days and beautiful wispy cirrus clouds sweeping across the blue sky. Life is more than good – it is terrific – and we treasure each moment, knowing what could be.

On the medical front, it has been decided that radiation will not be an option unless I develop symptoms (blockage by the primary tumor) and then the radiation would be low-dose palliative. It has also been decided that neither surgery nor laparoscopy would be appropriate at this time. Dr. Alexander (NCI, surgeon) thinks that my present situation is rather remarkable given the initial findings and proposes that if I'm still alive and well in December, then he would want to discuss the possibility of laparoscopy or lapatotomy to remove about 1/2 of the stomach, which he thinks he can do cleanly and without significant consequence to my lifestyle. He basically wants to see if we can keep the mets in check with the immunotherapy- then there might be a situation in which surgery of the primary (and maybe any mets that he could see) would be beneficial. He was also most enthusiastic about Dr. Marshall’s proposed "maintenance" chemo regimen of Xeloda, celecoxib, and a PPARgamma inhibitor as a possible sequel to the immunotherapy. He thinks Xeloda is a wonder drug - I would agree, given my outcome, but it is also very tough on the gut epithelium, the feet, the hands, the mouth, etc.!

Now I'm working aggressively to set a date to start the immunotherapy. We are still waiting for the single patient exemption, but I'm aiming to start no later than July 12. The PANVAC trial against both CEA and MUC1 antigens will consist of immunizations spaced 2 weeks apart and then the possibility to continue with monthly injections, depending on the disease status as determined by CAT scans.

Now it’s onward with life and especially with the wedding of my niece, Kathy – something that again I never dreamed I would be a part of in the bleak days of March. So far I have been one incredibly lucky woman and have benefited from excellent medical advice and care. Let’s hope I can continue on such a path.

Sunday, June 20, 2004

Recovery….I am recovering in so many ways, both in terms of measurable aspects like my stamina and my appetite, but also in so many subtle ways. As an example, I found out tonight on my walk that I could whistle again. The chemo had done such a number on my lips and my mouth that I had been totally unable to purse my lips to whistle. When I was young, I took great pleasure out of whistling “duets” with my father – who was a whistler extrodinaire. Our favorite was the Sousa marches which we would whistle as loud as we could taking turns with the various parts – especially the piccolo. This was tough on my poor mother, who was subject to migraine headaches and could not abide whistling. So tonight, while walking, I contentedly “fifed” out my tunes with lots of great memories of times past. Other mental signs of my recovery are that I am again able to play “Solitaire” on the computer without thinking that losing means losing the battle with cancer, and better, that I am again able to enjoy listening to my dearly beloved Requiems, without thinking that they might be played at my funeral! Subtle changes, but important. Another big step is that Bob and I are now sufficiently confident about my health that he has agreed to let me be alone while he is on a trip to Alaska for 4 days. So we are making lots of progress.

Fears….The more I recover, the more I become worried that the cancer cells are recovering from their chemical onslaught just as quickly. This fear will be abated only when I get on a treatment plan – which I hope will be implemented in the near future. This week I will meet with a surgeon, a radiologist, and hopefully the NIH immunotherapy group. After that, I hope that we can settle on a plan. I am fully aware that this will be a continuous battle and I don’t want to let my guard down.

Friday, June 18, 2004

Lots of good news this week, though from what I have read, this is a very tough disease to conquer and we should simply remain optimistic. The endoscopy showed no involvement of either my esophagus or duodenum and that the tumor is limited to about 1/3 of the stomach wall. Further good news is that the biopsy showed few viable tumor cells, though Dr. Marshall cautions that it may not have been deep enough. Next week I will meet with a surgeon and a radiation oncologist to discuss possible treatment options. Regardless, I hope to start immunotherapy the first week in July and the NIH is moving heaven and earth to get the appropriate paperwork signed off to permit my treatment.

Otherwise, my taste buds are slowly recovering post-chemo making eating more enjoyable. Tonight for the first time I could taste popcorn! Bob and I are treasuring these “chemo-free” times and both of us are learning to relax a little and take life one step at a time. Our long walks after dinner and our green tea (with Greg’s custom-made Japanese tea bowls) and hot-tub at night are the highlights of the day.

Tuesday, June 15, 2004

After today, I am ready to schedule an endoscopy every Tuesday. The procedure went smoothly and the wonderful cocktail of Fentanyl and Versed left me feeling nothing and remembering nothing. Bob brought me home and after 3 hrs of blissful sleep I feel SENSATIONAL! Not surprisingly, there is a “malignant appearing” mass in the stomach, and we are awaiting the histology. Many wonderful people at the NIH are working hard to get the paperwork in place for me to be treated with the vaccine trial, and I hope that this will still be the preferred treatment after Dr. Marshall evaluates the histology.

That all aside, our few days of “life without chemo” have been most special and therapeutic. My appetite has returned and I am trying to improve my physical conditioning. I attempted to run a little on Sunday, but my knees and hips felt rather “wobbley”. But I’ll get there. Bob and I did get back to the “Y” and the Nautilus circuit and that in itself was a milestone. Life is good!

Friday, June 11, 2004

Well, in reading my previous two blogs, be happy that I spared you the unpleasant details. After being quite “down and out” for 4 of the past 5 weeks, there is now a rainbow on the horizon. A big rainbow blazing its colors in the sunshine after the storm. After visiting with Dr. Marshall on Thursday (to discuss my scheduled 4th round of chemo for today) it was decided that I will go off chemo for the present. This decision was based on my present weakened state due to increased toxicity from the chemo regimen, and, better, on the very small tumor burden as indicated by the CT scan. As a final check, I will have an endoscopy/ biopsy on Tuesday to determine the state of the primary stomach lesion from the “inside”. However the decision is now to proceed to immunotherapy as a next step and to get a special exemption to participate in the NCI study based on virus driven expression of the CEA and MUC1 antigens, both of which are expressed by my tumor cells. What is exciting to me at this crossroads is that data suggest that chemotherapy enhances the response to immunotherapy and subsequently, that immunotherapy enhances response to further chemotherapy. So I am beginning to set my sights a little further ahead with increasing optimism.

Bob and I feel as if we have been handed a silver platter holding a magical package called “quality of life”. Since March we have dealt first with the initial shock of the diagnosis and the prognosis and then with each increasingly problematic 3 week chemo cycle. Especially in the past four weeks we have felt that we could plan only one day at a time, if that. Now it feels as if our horizons have been expanded and our emotions are soaring with unbounded joy – regardless how temporary this may be. We feel as if we’ve been given a little breathing room in this journey and view each day as a precious unexpected gift. My immediate job is to regain my strength and I will do so with a vengeance. The wedding is becoming a reality and then the lab site visit September 1. I wouldn’t have believed either of these possible in those dark days of March.

Tuesday, June 08, 2004

I realize that it’s been a while since I made an entry, but I got stuck in a few potholes on this rocky road. The truly wonderful news is that the CAT scan showed no visible metastatic lesions, no ascites, and apparently a clear spleen and pancreas which had previously appeared to be involved in the primary lesion. The bad news is that the effects of the chemo, probably exacerbated by the barium for the CAT scan, threw me into a tailspin of fever, nausea, diarrhea, and dehydration that ended up with my being hospitalized Thurs through Sunday last week. It was as hard on Bob as it was on me. But there’s always something to be learned from these incidents and in some of my sleepless nights in the hospital I thought that if one were to have a “Special Olympics” for chemo patients, I might win my age group for the “unplug the IV, get the lines unentangled, then run as fast as you can with your IV to the toilet”. What fun. What made the episode even worse was that Greg and Suzanne were visiting with Max and Alyson. If they hadn’t released me on Sunday I would have tied sheets together and crawled out of the window (a little difficult because I was on the 6th floor). But we did salvage the last day together. Today for the first time in 10 days I have kept all food down and feel very much on the mend. We will meet with the oncologist on Thursday and discuss the future course.

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