The first is, "When is this jerk off going to die?" Okay, you probably frame it quite differently. More like, "How long does he have to live? He looks like death already. And doesn't he have another hat?"I'm just going to focus on the first question, which is sort of funny from my point of view because most people certainly wonder about how long I have to live but don't think it's right to ask and of those that do ask, they never get it out very smoothly.
The answer that some docs will give is I generally have anywhere between 1-3 years from the time of relapse. However, because I relapsed within six months of my stem cell transplant, that changes things a little. One study showed that of these patients, half die before making it the other six months in the year. I didn't die. My year anniversary was June 21 or June 18th. My wife knows. I don't remember much from that time. So I didn't die but I do have an aggressive form of cancer and that means it could turn on me at any time. To sum up, the answer is one day to three years left of life and no I don't have very many hats that fit my head right.
By the way, that's incorrect information. While I barely got a C in stats class at Texas, I can say with certainty that statistics are only snapshots and, most importantly, outdated ones. A stat is past due by its nature. Three years ago, almost all of the drugs that are now in clinical trials weren't available. So patients got sicker quicker and died with little to help them other than traditional chemo. Now the new drugs are around.
The second question is one everyone asks and don't stutter about. That is, "How am I doing?" Well, not the best. The cancer is clearly spreading and making things uncomfortable. Worse yet, relief is not in sight. I just heard from my team in New York that the drug company won't let me take the treatment until September. The team is still trying but it doesn't look likely. I'm a little peeved at my team too but I'll get into that in my next post.
After getting mad, I decided to get even. Ya see, while I can barely walk a flight of stairs and look like Hume Cronin's Grandfather, I am in high demand. Per the statistics above, there aren't a lot of me alive. Maybe about fifty people. That means there aren't a lot of people to take part in a drug company's study. I'm a hot commodity. So I decided that if the drug company can't make it sooner, they won't get me at all. I called the Mayo Clinic and am now waiting to see if I can get on one of their trials. They haven't called me back. I'll keep you posted.
Needless to say, this new chain of events has made me a little anxious, worried, more uncomfortable, more sick and flighty. That's a long time for this disease to go unchecked. I need to get something in me to at least slow this down. I had to wait before the last trial and my nodes grew. They, in fact, became the nodes that got me kicked off the trial as they continued to grow while the older ones stablized.
Those are my answers. But you can keep asking them if you want. I don't mind.