It was nicer here, more of the staff smiled at the patients and each other, the level of respect was pretty cool. We found oncology, checked in, and had a seat. It was my mom Barbra, sib Alex, Ha and myself. Dr. Kelley has turned out to be one extraordinary oncologist. At the risk of fawning effusiveness she has been one hundred percent behind every standard and alternative treatment that was put on the table from yoga and acupuncture, to clinical trials she heard about, as well as Reishi mushrooms and the Burzynski Clinic. She could only recommend the FDA approved clinical trials, but she would let me know if it was safe for the other things. With the exception of the Burzynski Clinic, on which ethically, she couldn’t really talk about. But she did want to see all the reports from the clinic.
At Kaiser they had put me on the Nexavar, but I was supposed to start full dosage the next week. Dr. Kelley kept the dose lower for a month and then raised it to full. She said the efficacy would be there and it would give my body a chance to get used to it. I felt a lot better on the Nexavar. Aside from a few side effects like little sores at the corner of my mouth-Blistex, dry feet and hands-Eucerin, and even after preparing great meals for my wife and I, I’d sit down and the smell of the food would sicken me-Peanut Butter filled Pretzels and Popsicles on those nights. Other than that Nexavar seemed pretty miraculous. I felt good and the quality of my life, all things considered, was good. I continued my thirty to forty minute walk in the morning almost every day, practiced the restorative yoga, and woke up fairly happy most days. But most days there was a beast looming...it was always there.
Then a couple of months later Dr. Kelley told my wife and I about a clinical trial she thought had real potential. First thing though is I had to stop the Nexies for a month! But I trust her so I stopped. After she tried and tried, for that month, and I did many tests to get me into this one clinical trial, I was eventually turned down through no fault of hers. The ’08 heart-attack was the culprit. It was a fairly crippling blow especially because I couldn’t go back on the Nexavar. Dr. Kelley said that at this point it would be too risky.
Her next recommendation was a combo chemotherapy deal called CAPOX which her boss recommended. It had a ten percent chance of working and had been used previously for a different type of cancer that had metastasized to the liver, but never directly for liver cancer. It involved a regimen of Capecitabine plus Oxaliplatin one was an infused drip for which I needed to surgically have a "port" inserted and the other was pills. A port is an implanted direct line to a major vein. My intuition told me no but ten percent are the best odds I’d heard yet and was swayed.
We read the side effects and Dr. Kelley explained them as best she could. It was very strange. After the first infusion anything cold made my face, fingers, and hands tingle. If I drank anything, even above room temperature, it felt like drinking gravel. There go my popsicles. And that lasted for three weeks, at the end of the fourth week it was time for another infusion. My fingertips began to crack and split (which they still occasionally do) and bleed. At around four to five o’clock the fevers and cold sweats would start...every night. Sleep was like intermittent at best, and every night it would be the same scenario, sleep a couple of hours up a couple of hours. The first half of the day I’d feel ok, so I kept up the walking but it was down to a slow half hour. Then in the second week depression was strangling me and every night when the fever went up to 101 or so I began to think that this is my last night. I would not be waking up tomorrow. When I’d wake up throughout the night I would be scared to go back to sleep so I took a Xanax. Which helped with the stress and relaxed me enough to sleep a couple of more hours. I set my iPhone for six in the morning with a harp alarm and a message that read “Another day you lucky bastard!”
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