Conner used to sleep walk. That was a little creepy because he looked perfectly awake and then he'd talk about going on a horse back ride or something like that. I think I used to sleep walk when I was a kid. My Grandmother one night found me relieving my bladder into a closet.
My wife doesn't really do much in her sleep which makes her very boring in that respect. She doesn't even remember her dreams. I mean who doesn't remember their dreams? Heck, that knocks out the plots of hundreds of movies right there.
I say she doesn't do much because every once in a while, she'll slumber. She doesn't talk in her sleep. She sort of moans, groans, coughs, farts and does a weird gargling thing. Sometime all within ten minutes of each other, accentuated, of course, by the grand fart.
A couple of nights ago, she did something that she occasionally used to do. She just shortened her routine to a sigh. I heard it. I remembered how she used to do that much more often. And I heard it again in my head and I noticed how her sighs are always filled with all the goodness in life. There were smiles, relief, relaxation, pleasure, innocence and more smiles. Such a great sound.
And at that time I knew what I had to do.
For a couple of months my doctor has been pushing me to consider an allo transplant in the future. This is the type of stem cell transplant you get by using someone else's donor stem cells. You'd think it would be a lot more successful than doing a transplant with your own cells because these come from a healthy body. But actually it's quite the opposite for Hodgers. I think the deal is you have to trick the foreign stem cells into thinking that they're still right at home with their usual liver, kidney, heart and lungs when in fact they are hanging out with someone else's and they can't get out. All kinds of kinds of anything can go wrong.
The chance for a full cure has been around 8-12%. My docs are telling me that this rate has risen much higher since those stats. The chance of dying from the procedure is around 30%. That's about the same.
So if my math is correct (and if anyone has seen the way these kids are doing math these days, you know that it can be way off), 42% of the people either die or are cured right away. That leaves 58%. What happens to them? I believe the answer is they simply die later on, probably within a year or two.
Sometimes they die a very painful death. There is something called GVHD. It is a disease you get when your new stem cells don't like your liver or lungs or pancreas. they get pissed off, cause a lot of pain and eventually you die.
Sometimes people die a very frustrating death. Assuming they don't have GVHD, they're still not in the greatest of health. And their cancer is tough, really really tough. A doctor last week told me the tumors in my lungs were already as hard as concrete. Because of this, drug companies exclude people who have had an allo in their trials. They argue, quite correctly, that a person who has failed so many treatments is not a typical hodge patient and will therefore, skew the trial results in a negative way. They get bad numbers.
So the post-allo hodge patient is left with trying to beat back the disease using traditional chemo, which, at this point, isn't a whole lot. To put it bluntly, it's certain death. It just depends on how long you can hold out.
My original plan to hop on and off trials as long as possible has hit a snag in the form of me. Well, my body, at least. My mind is all for trying whatever drug to get me healthy. But my body is giving up. Right now, I am typing this at 3:39 in the morning because I can't sleep on the account of my nueropathy. Nueropathy is pains that start in the feet and hands and present themselves at first as tingling, as if your extremities are falling asleep. then it progesses to pain. then it progesses to pain that randomly shoots all over your body, all the time. The cure? Stop getting treatment or nueropathy will kill you. Without drugs, I just have pain in my extremities. Without pills, I have shooting pain all over my body all the time. the drugs evenutally lose their effectiveness. And I spend more nights trying to sleep but just getting shooting pain.
And then there is New York. Nobody ever fund out what caused me to be very sick and in a hospital this month. But I'm still not better and may never really get better. My lungs are badly scarred. My liver functions is low. My kidney is actually doing okay. My other organs aren't.
I think my body is telling me it's had it. My doctor, in his easy way, has basically told me that he can keep giving me drugs but that doesn't mean I'll still be able to take them. It feels like to him, I need to get an allo. He would agree with what my body is saying.
I was pretty dead set against it until I heard that sigh the other night. That was a sigh of another time. After the events of this last month, I know I'll never get that time back just by jumping from trial treatment to trial treatment. I know now that I'm only going to get worse.
And so instead of asking how long I can take or how long my body can take, I should also ask how long can she take? I know many of you out there will say stuff like don't worry about her or she'll take whatever she can because she loves you and stuff like that. But I see what it is doing to her. And I'm fucking tired of only hearing that sigh on a random night. I want to hear it every day and every night. Instead of conversations about the pains in my feet or the coughing, I want to talk about nothing and love talking about nothing. She is great at talking about nothing. The best. But nobody can do that when someone has cancer. There is no nothing any more. That stuff is trivial. There are, however, sighs in the middle of the night. They sound so beautiful. I should love them but right now I hate them, instead. I think I may be ready to die to love them again.