Friday, October 14, 2011

Major, Significant Change for the Worse

I am suddenly very, very ill. Over the past five weeks, I've gone from feeling pretty darn well, to being essentially bedridden.

My problem is in my abdomen. I've been to the emergency department twice, had an MRI, three stool cultures, multiple blood tests and blood cultures to look for blood infection. I've seen 12 doctors in total. They have no idea what has happened to me.

I do have some ideas. Based upon my rapid decline, one naturally thinks of Richter's Transformation. I am a prime candidate because I foolishly listened to Dr. Weirda and had four cycles of FCR. The combination of a purine analog (fludarabine) with a potent alkylating agent, is a recipe for disaster. This ups the risk of Richter's, as well as secondary myelodysplastic syndrome, which is quickly fatal.

Based upon troubling new symptoms, other possibilities must be considered. The most likely problem based on these new symptoms involves the pancreas. Pancreatic cancer, unfortunately, comes up all of the time when I analyze my overt symptoms.

I will say it could be curable, whatever it is, but it doesn't feel that way. I think many, if not most of us, have a sixth sense when something is very, very serious. That's where I am at right now.

I am going down to UCSD next week to have more of a work-up, though not too many people seem willing to go very far to get this done soon. So what I am thinking of doing, based on advice from a community gastroenterologist here in Sacramento, is to get everything looked at, not just a scan. I'm thinking of going to the emergency room right after (or before) the colonoscopy, and see if I can get admitted.

That's really the best option. The docs here in Sacramento revel that they don' think much of the medical community in this city, and I have to agree with them. That's why I go out of town for pretty much all of my cancer care.

To be honest, I will do my best to keep everyone posted as to my condition, but I may not want to share things about my body and the developments in the case.

I have no idea what this means for the CAL-101 trial. It does not seem possible that that drug could be responsible for my pain and anguish, but I guess we may have to look at everything if something doesn't pop up soon, which I think will come next Wednesday.

I do belong to a church, and the kind folks are praying for me. They will be a support network for my wife once I depart this failing planet. And she will be very well provided for once I am gone.

I'd like to make it to Christmas. We will see.

Thursday, October 6, 2011

Steve Job's death

The passing of Steve Jobs has affected me more than I thought. It's not that I am an Apple devotee; far from it. I own no Apple products, and I have long believed that they were over-priced. That's not why his passing has affected me.

Here was a man with more money than Midas, yet he could not beat cancer. He had the best care in the world, one would assume. He could have access to drugs and treatments that no one else could have, simply because he could have bought the drug company with promising products, outright. Yet, he could not beat his cancer.

What chance is there for the rest of us? The one who have to depend on government health care, or health insurance that is cutting back services in order to pay for millions more on the government dole. We all know it's coming, and we all know these cutbacks are being implemented as we speak. (For example, Stanford cannot come to agreement with Blue Cross because they are instituting cuts in reimbursements.)

It is a dark period in cancer research. The number of drugs approved for cancer use is declining. Vulture lawyers are trolling for patients who may, somehow, blame some past use of a drug for some unlikely outcome. Drug development costs are rising. The FDA has instituted a 'go slow' policy so that they aren't blamed for problems with drugs that come up years after approval of the drug.

Already, promising drugs for CLL like flavopiridol (Alvocidib) are being dropped because the CLL population is so small. One can only expect further degradations of health care as time goes on, and as Medicare comes under greater assault by the millions of Baby Boomers (such as me) begin to retire. As the economy continues to falter, income to the federal government, including Medicare, drops.

It's a bleak time indeed. And nothing illustrates that more than the passing of Steve Jobs. The world may have lost a visionary, but it also lost a fellow cancer fighter; one of us.