Topic: Overdue Update
Hi One and All,
I was recently emailed by a user of this site, who, considering my prolonged period of silence had to prod gently about my status. With CC, you are better, the same or worse- with the same or worse not that great and better not that common. I answered her back, not sparing her my particular brand of unreserved observations, recommendations, insights, delights, kvetches and humor about CC, cancer, medical treatment in the USA currently and life & death overall. As perfectionist and caring guy, you can just imagine how all the errors, blunders, stupidity, rigidity and mess-ups drive me crazy. Because they hurt people.
My CC health is great. On a scale of 100, I give it a 98. My CA 19-9, 120 before the Whipple, has run 4-12 since. My PET, CAT and MRI scans are totally clear, and they are the full series ($14,000/scan). I have no symptoms of any kind. Notably, I have nothing from the Whipple itself- no adhesions, inner scaring I can detect, digestive problems, or need for insulin. Some top docs told me my Whipple is the best healing incision of that type they ever saw, and these are senior dermo’s and surgeons, so I feel very lucky. I have a tiny bit of pulling at the scarline that is relieved with a kind of pinching massage to break up tight tissue.
At 66 and with a vast history of bodily adventure, I am slowly falling apart elsewhere with bone-on-bone hips, foraminal stenosis, Barrett’s Esophagus (that can develop into esophageal ca, just a notch better than cc on the cancer continuum) and varying health squawks. I do my best to treat them according to what my body likes. Most of us just supplicate ourselves before The Doc and do what our insurance will pay for. Because I don’t, I vex certain docs and spend tons on alternative medicines and have to work very, very hard.
I am most upset with our crazed ‘health care system’ which is a series of different systems for different kinds of people, and woe betide those who are one of the ‘wrong’ kinds. It overtakes one’s entire life in the final years as we spend so much time and money in clinics and shuffling between tests. Historically, traditionally, we live until we die, do the best we can, pay what we can and hope insurance and the government step in. But along come drugs at $30,000/injection and a few other things, and we find out we can run out of money before we can run out of physical life. What are our choices?
I never considered this that much. I never thought it was literally “Pay or Die”, but I believe so now. I have wealthy friends who only worry over physical health as they have enough money. But I also have ones who have to choose between treatment options or running totally out of money at some senior age like 75. Who wants to old, wobbly, unemployable and flat broke? Some are literally mapping out their remaining time and money so they enjoy quality time now and maybe chop off the messy last years when they might become little more than medical specimens racing from one doctor or hospital to another while inevitably on the way down no matter what they are doing.
For me this is especially troubling. I had hoped to retire and do OK in a modest way during my final years. But I still need to work at 66. Medicare would have been great had I been on it when I got CC and had the Whipple, so I didn’t have to shell out that extra $122,000 this cancer cost me out of pocket. My pancreatic enzyme is around $475/mo. even on the Medicare supplement drug plan. I can run up $500-3000 in alternative medical expenses/mo. without blinking. If I cut back on these, I fear I am compromising my health. If I don’t, I fear running out of money. I can almost see a cartoon panel of me in a few years exulting over ‘beating cancer’ as they wheel me into a dilapidated nursing home nestled in a slum neighborhood where the streets teem with packs of wild dogs and carjackings. “Cancer couldn’t get him, but the economics of the current US healthcare system could- and did”, I don’t want my epitaph to read, but I could be heading in that direction.
So, I remain around, obstreperous and cantankerous as ever, wishing things to be better, certainly for CC patients, and willing to work toward anything that helps. Anyone is free to write me on this site or at Jeff@JGYoga.com.