04: Haircut Poll Results, False Alarms and More!

The haircut poll results are in and hair has been cut. The big winner? Who loves ya baby?  Kojak! (see the attached JPEG) First of all, let me just say that all of you are crazy. Kojak? That’s a real easy call to make when it ain’t your head. Hands down, 97% of respondents said they would shave it. Two percent said go for the mullet and one person said i should just cut it short. One person! What’s scary about this, is that it means i only have one sane friend in the world. Of course many of you reminded me that i have a cute head and face, and naturally i agree. So you can’t be completely insane. However, I’m not a detective, nor do i play one on TV. If i EVER go full on Kojak you can bet it’s because i joined the swim team or it fell out. What’s weird is not only is the hair on my head falling out, but the hair in my right armpit is too. Now that’s funny. In the meantime, as a preparative measure, i’m shopping for a 70’s style afro wig. (for my head, not my right armpit) So if anyone knows where to get one, let me know. By the way, for those of you who didn’t know what a mullet is, this should explain it. I think it’s a good look. For other people.

The big bummer here is that my donor match isn’t really a match. Yet. It gets confusing, but basically there are three levels of testing: HLA, Serological, and Molecular. You may remember I had 51 HLA matches. Those were narrowed down to four based on various criteria and then tested Serological. The second of those 4 candidates was a serologic match. Now, up until a few months ago, that was the end of it. If you had a good serologic match, you had a match. And that is why the Duke coordinator called me and told me they had a confirmed match causing me to spontaneously touchdown dance. But now they do even more refined testing, the Molecular testing, which hasn’t been done yet. So, it’s not really a match. Yet. See? Anyway, keep your fingers crossed for me and if you still haven’t registered with the National Bone Marrow Registry and you want to, now is the time. (1-800-marrow-2 for info)

Here’s where it gets interesting: My doc at Duke is leaning towards postponing my BMT (even if a suitable match is found) The reason? My balding head. See, he thinks the interferon is working. And if it’s working, then the CML in my bone marrow is getting it’s but kicked and, hopefully, will eventually cry “uncle” and give it up. I won’t know anything for sure until late november when they’ll do what’s called a bone marrow biopsy or aspiration. Basically they set up a little oil well on my hiney and mine marrow out of my tailbone (properly called the iliac crest for you smart kids). Then they look at it, and look at it and look at it. And then finally they call me up and say, “Eran you are an amazing guy, we’ve never seen anybody (any body) kick CML’s butt like this.” Or they might just say something about possible remission. I’m not sure exactly. What i’m getting at is while a transplant is still the only cure for CML, it’s possible to put it into remission for a few years. Even if the odds of remission are 1%, someone has to be in that 1%. I think it could be me. I used to think i wanted to do the transplant right away, but a BMT is pretty damn hard time, and i guess maybe waiting would be all right too. Besides, my doc keeps telling me that in a few years the way to treat this disease could be completely different. In other words, it might suck less. Might.

In the meantime, i’ve been reading a lot about a technique called visualization, for example when i inject my medication i imagine that it is a bunch of miniature tanks cruising around my blood stream blasting away rogue white blood cells. Scientific isn’t it? Well, I’ve come up with an experiment to see if it really works. I need your help. I want you to try it: Visualize me in remission. Visualize me with a thick bushy head of hair. Visualize me living to be 100. Visualize me in bed with voluptuous twin sisters this weekend. This last one is strictly as an experimental control. It’s the only way we’ll ever know if this visualization technique really works. Really, I wouldn’t ask if it wasn’t important.

That’s it for now. I’m feeling good overall and trying to decide what to be for halloween-my favorite holiday. I was thinking about dressing up as leukemia and letting everyone kick my ass, but then i realized that’s my job. So if any of you don’t know what to be come Oct. 31, swing by my house dressed up as leukemia and I’ll work you over.

And finally, if you haven’t read “The art of happiness” by the Dali Lama, go get it right now and don’t turn your TV on until you’ve finished it. It should be required reading for humans.

Thanks and hugs to all of you for your ongoing prayers, good vibes, emails and support. Please know that even if i don’t reply right away to your emails, i still appreciate the responses.

I’ll let you know how it goes with the twins.

-ET

PS. After recent inspection I’ve concluded that my armpits are equally hairy. Whew!

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