Tuesday, November 30, 2004

The aspirates of the nodules showed only activated fibroblasts and no detectable tumor cells, so I have once again skirted disaster. Now I have to reset my brain for two more months, stop reading clinical reports, and not think about the longer term problems inherent in my stomach tumor. I think that it will take a few more days for all of this good news to sink in and for me to get back into high gear. Maybe I just need another Thanksgiving!!

Monday, November 29, 2004

Today I got another 2 month lease on good living with another “clean” CT scan and another injection of the PanVac vaccine. The only possible hitch might come with superficial nodules that are developing near my original incision line. They did a fine needle biopsy today and I will know the results tomorrow. Thanksgiving was so wonderful in every way that I found myself resolved to accept whatever news I would get today. As a result, I am completely devoid of emotions regarding the good outcome. I’m just totally drained and exhausted by the events of the day.

Sunday, November 28, 2004

Thanksgiving day was of the stuff that dreams are made of……..The day was so special and so perfect that I thought perhaps I had died and was viewing it all from heaven. Jeff got the ball rolling by starting the turkey in the smoker in the early morning hours. Then as the sun warmed the day we all headed for the beach with dogs, kids, and kites. It was totally utopian. The (big) kids had the stunt kites zooming up and down always threatening to crash in the surf but then evading disaster at the last second and sailing back up into the blue. The (little) kids managed to soak most of their clothes and their shoes and socks even though they all insisted that they took them off before they went into the surf – of course they forgot to mention that they had each stomped their way through every puddle that they encountered on the way to the beach! Then they spent the next two hours all enthusiastically digging together to build a sand crab castle complex. Bob and I reminisced back to the days when our own children were playing with their cousins (also here) on the same beach on Thanksgiving about 25 years ago. Here we are playing out the same scene with the next generation. Bob and I celebrated the day with what might be our last barefoot run on the beach. Then Greg and I practiced the Yoga Sun Salutation on the wet sand facing the king of the universe – the sun. It was all so memorable.

The rest of the day was just as good with continuous activity in the kitchen as everyone made their special contributions to the impending feast – stuffing, cranberries, yams and apples, pies, etc. There was so much chatter, occasional singing, and just plain fun. And then finally the great feast with lots of toasting and harmonizing with the family trademark “Ein Prosit”. It just couldn’t have been any better.

The next two days continued with great weather – “great grama” (Bob’s mom) taking all the grandchildren shopping in the Dollar store and to McDonalds for ice cream, the (little) kids playing for hours in the sandbox, playing kickball, or riding their bikes, and the (big) kids playing golf, running on the beach, cooking, etc. We even managed to get everyone together for a family picture on the dunes – something that is a real feat in this family of strong individuals. We are simultaneously raucous, boisterous, and joyous. We are so blessed to be part of such a loving family- cousins, brothers, sisters, parents, grandparents, great-grandparents, and spouses, all enjoying the bond of family. It enriches each of our lives.

I gave everyone LIVESTRONG bracelets – and we will.

Thursday, November 18, 2004

I consider myself a very stable person. But dealing with this disease takes its toll on my brain. The past week and a half I have had increasingly unpleasant feelings in my abdomen which, coupled with all the reading that I do on gastric cancer, convinced me that I was accumulating ascites fluid in my gut. I finally had myself so convinced of this that I was sure that I was going to have to go off the immunotherapy trial, and was already thinking about what chemotherapy I might have to endure and worrying about my ability to honor commitments even in the short term future. These thoughts so consumed my brain that I finally contacted my doctor and he scheduled an ultrasound exam. Fortunately, and very surprising to me but of immense relief, it seems as if everything is still OK. I can’t believe that I am turning into a hypochondriac – me, the person who always counted on my body to heal itself and never saw a doctor for anything. But now I no longer can trust my body – it has let me down in a big way. And I am truly afraid that my usual “heal thyself” philosophy could lead to my demise. I can’t afford a wrong move.

With the good news, I can now really look forward to Thanksgiving. I am trying hard to push all negative thoughts out of my head. Bob’s Mom arrived today and she and I will do a lot of baking this weekend. Then on Tuesday the great family gathering at the beach starts with the arrival of Karl’s family. Everyone else will come on Wednesday and we will have a rollicking time – 12 adults, 5 children, and 6 dogs – through Sunday. It will be sort of like the Pete Seeger “Foolish Frog” song with all the kids, grandchildren, dogs and soda pop exploding out of the building and everyone dancing and happily singing the song! This means so much to me. I never would have dreamed in March that I would still have my feet on the ground at Thanksgiving, let alone be planning for long runs on the beach! I want these good times to last forever, but I’ll buy even a few more months. I feel so alive and am so appreciative of living!

Saturday, November 13, 2004

This is both a wonderful and difficult time. As my impending CT scan gets closer (Nov 29) I am increasingly aware of the fine line that I am walking between the high quality of life that I am currently enjoying on the immunotherapy protocol and the abyss that I might fall into should I show any progression of disease on my scan. And of course, whether it is my mind playing games or whether it is real, I imagine the worst. At this point, I no longer have any reference point of what might be “normal” feelings for my gut. When one is “normal” or “healthy” your body is not part of your conscious thought – it’s just there. However, for me, in my present situation, a significant percentage of my brain activity is unfortunately focused on every single rumble and grumble of my gut or discomfort in my stomach. I feel the best when I don’t eat at all.

But …. So much of the good times in life are associated with good eating, good drinking, and , most of all, good company.. Tonight Bob and I enjoyed a wonderful rack of lamb accompanied by a 1999 Valpolicella Amarone (rating 97). It was an evening worth remembering with lots of laughing and crying. It was life at its fullest. We are at the beach where it is very cold and windy, but a walk after dinner treated us to the most sparkling starry night – making us wish for a peace that doesn’t exist in most of the world.

Why do we need a life threatening disease to make life this intense??

Tuesday, November 09, 2004

A week ago we met with my oncologist and with a surgeon at the NIH to discuss possible future options for me. Although I have no detectable metastatic disease, I still have a tumor involving the major portion of my stomach. Surgery to remove the stomach or a portion of it could possibly also require removal of the spleen and part of the pancreas, depending on whether these are also involved with the tumor as stated in the initial surgical report. Because the surgery will clearly have quite a significant impact on my quality of life, and because my present quality of life is so exceptionally high, there is a lot to consider. What helps in the decision is that surgery is usually not considered for stage IV disease, because the likelihood is that the patient will die from the disseminated metastases. Further, my initial surgical report puts me in the very worst category – despite my rather amazing “health” at the present time. The choice is made even clearer by the fact that I would be disqualified to continue in the immunotherapy protocol if I were to have any major surgery. So besides having uncertain benefit for my survival, I could be shooting myself in the foot by having to stop the very treatment that appears to be keeping me in the game. I am fortunate to have a lot of advice from a Korean colleague who is expert in treating gastric cancer, and he too agrees with the decision that it is not in my best interests to have any surgery in the near future. Rather, we will wait for the next CT scan (Nov 29), and if that is still good, the we have two more months of good living. If not, we will have to consider additional chemotherapy options.

No matter what, we have been blessed with some unexpectedly wonderful times these past few months. With “good health” comes some intense “good living”. “Carpe Diem” while the scans are good! We just got back from 4 days in Arizona visiting old friends in Tucson and then hooking up with my sister and brother-in-law for a trip to Sedona and then to the outskirts of Phoenix to reconnect with my cousin who is recovering from a broken neck resulting from a car accident this past summer. She’s doing remarkably well – an inspiration to me and hopefully vice versa. LIVESTRONG. While in Sedona we had a glorious hike up the red rocks and visited some of the ruins of Indian dwellings in the region. I have embraced the Southwest style and culture for years and enjoyed every minute of it. Now it’s onward to one last peaceful weekend at the beach with just Bob and me before the great family event at Thanksgiving! November is going to be a month to remember.

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