Wednesday, September 26, 2012

More stupid whining

Sorry. It's been a long long time. i think I really needed a time away from everything, at least in my head. I wanted to try to forget, although that is a pretty ridiculous idea since everyone who has ever had cancer is aware of it every second they're awake.

I finished my SGN treatment. The FDA only allows a certain maximum number of treatments and I hit it. They do this because the side effects can get permanent. That's very believable.

I'm currently in a complete remission. Very excellent news. However, I still have a lot of side effects from the SGN. The bottom of my feet hurt so every step is a little bit of a shock. I have become a big fan of carpeting. My hands and lower arms are nasty, as well. It's really hard to handle small or slippery things like money. So every time I pay for something, I fumble all over the place. Sort of like a mentally challenged person.

This little vacation, however annoying it's been with the side effects, is essentially over next week. I will be seeing a doctor at Northwestern about getting yet another stem cell transplant. This one has a slight chance of killing me but it's probably time.

This transplant is different than the last one. First, I won't be killing my body and then injecting my own stem cells back into me. Instead, I will be killing my body and injecting someone else's stem cells into me. Now, before this year, something like this had a less than 7% chance of success. And it still has a 30% chance of ending in death. But this last year, some granola folks out in Seattle figured out that if patients like myself get into complete remission with SGN and then go for a stem cell transplant using someone else's stem cells, they have a more than 50% chance of success. They found the right chemo drugs but the bigger key was the fact that the patient needs to be in a complete remission. Still, 50% are the best odds I've had in a long time and probably the best I'll ever see.

The key is staying in remission. Studies have shown that the cancer comes back after two years, but I've never been able to last as long as the average person. And I'm already past one year as I got into remission while I was still getting treatments. I saw a doc in Seattle and the BOSS Dr. O'Connor in New York and they are both very nervous for me. It can come back any time and just because it's tired of taking this long coffee break.

The thing is, this transplant takes time. First, I have to find someone who is a match. Then that person has to find the time to do this. And it isn't easy for that person. I've already asked my sister and she has been really into doing absolutely anything.

With this political contest, there has been all kinds of talk about Ayn Rand. I used to be a believer. In particular, she said that people don't do nice things for other people--they're really doing it to make themselves feel good. Basically, it's all about me.

Ayn Rand never had cancer. It's just not true. People almost without exception, react a certain way when they find out you have cancer. They stop. Think. Slow down their speech for some funny reason. And they become overwhelmingly sympathetic. When you get that love, it makes you feel so much better inside. As if the love almost physically passes through. Yes, that feeling could simply be gas. But I doubt it. More than saying, "Hey, I have a broken leg." People usually shrug that off or even laugh. But not cancer. For some reason, everyone completely understands the enormity of the disease.

This isn't a selfish act. People aren't thinking like that because they want to make themselves feel better even if it is on an unconscious level. I generally don't like people. A good night to me would be to stay home and watch something on TV. I would take that over a night in crowded, smokey Vegas any time. But this event has made me love people. I am reassured by the fact that we are all flawed but we are all trying to enjoy the better things in life even despite the bad things that can happen. Like what Honey Boo Boo would say if Honey Boo Boo actually thought.

My sister is the latest example of this selflessness. The process that she would have to go through to give stem cells is a bear. They shoot you up. Prick you. Knock you out. Shoot you some more for 20 plus days straight. And then the procedure really starts. She doesn't care. Now I know people will say that it's nothing compared to saving a life. But it is. It's not like I'm asking her for a few bucks. Just because someone would naturally want to do it doesn't mean it will be a pleasant process.

Any way, who knows if she's even a match. With my luck, she won't be. That's when we have to go to the database. When we do that, it could take as long as 6 months. Also, because those stem cells won't ever be a completely natural fit, I'll almost surely have permanent side effects and some of them can be nasty. But I'll take that over the alternative.

By doing this, I can get out of the corner that I'm in. My disability insurance has already withdrawn a not too insignificant amount and they are looking for more blood. My health insurance has also been cancelled because I am technically not on the TDH payroll right now. So along with making less, I'm now paying for hoth the family's insurance as well as my own. I do get Medicare and that's not as much of a nightmare scenario as it is made out to be. The insurance I now have to pay for besides my family's is supplemental insurance for the stuff Medicare doesn't cover.

Don't get me wrong. We are not in need of money. Not at all. It's just that I can see a day when the disability checks can stop for good and the health care gets even pricier. And before I started all this, I promised I'd never dip into the savings I had built up for decades, all to stay alive an extra couple of months. I still believe that to my wife's objections.

So that's it. Thanks for wanting to hear from me. I don't know why. This is my whining opportunity and I usually don't disappoint.