Tuesday, February 23, 2010

MDS Becomes AML - You Can (and Sometimes Must) Go Home Again

Back in the hospital. It's like old home week here. Everybody knows my name. Everybody remembers what the problem is and what I'm here for. Even the guy who wheeled me down to x-ray remembered me—as did the woman who coordinates the order in which patients go into x-ray. She greeted me enthusiastically, saying "We've met!"

"Several times," I replied. With a smile.

This place is rapidly becoming my second home. Not really what I had in mind. I've always wanted a second home in the Berkshires or Vermont. With five or 10 acres, if possible. And a mountain view. Oh well.

It's an odd feeling to come here while feeling fine. When I arrived last April and this past January, I was really sick and I knew it. There was a logic that said, you need to go to hospital.

But, here I am, almost hairless but feeling rather chipper, and basically I'm saying to my keepers, "Sure fill me full of hi-test and make me feel miserable. And, while you're at it, feed me some of that god-awful food you serve up around here. Why not, I'm feeling great."

Luckily, Penny and Laina will take turns bringing in dinner. There are limits to my culinary tolerance..

The biggest news so far is my socks. Hand-knitted for me by Leena-the-Elder (namesake of Laina-the-Younger) they're bright red-gray-pink striped woolen foot covers that fit perfectly and—Penny is glad to see—don't cut off any circulation at the ankles. (When I get a camera in here, I'll publish a photos of them.)

Everyone—and I mean everyone—has commented, "I love those socks."

Whilst I was waiting down in x-ray for a return push to the room, an older woman (well, older than I) was wheeled in and parked next to me. Her knit hat gave her away as a cancer patient, too. The first thing she said was "I need a pair of socks like those!" a chat followed about the need for warm, loose socks  which, after I complimented her hat, morphed into long discussion about how to keep one's head warm when you're not accustomed to being bald or semi-bald.

My newfound friend related how she wraps a turban around her head for sleeping at night, but "sometimes it comes undone and it wakes me up immediately. It's cold!"

I agreed. Laying one's head on the cool side of the pillow is a whole other experience. But, I've assimilated well enough now that I no longer wear my cousin Susan's knit hat to bed.

So, the deal here this time is this:
  • two hours of chemo at a 12-hour interval on Monday, Wednesday and Friday.
  • Tuesday and Thursday off
  • discharge as soon as my counts return to something normal and my GI functions show no ill effects.
This schedule caused a big sigh of relief. What I'd understood was two 12-hour infusions on the three days, which would've meant being tied to my five-wheeled friend (a.k.a. Ms. I.V. Pole Queen of Chemo) for all of the three days. This way, I'm Pole-free most of the time.

Oh freedom.
Oh-oh freedom.
Oh-oh freedom over me.
Before I'll be a slave [to Ms. Pole], I'll be buried in my grave
And go home to my lord and be free.

6 comments:

  1. Glad to hear your treatments will be less time-consuming than anticipated. Good thoughts to you for tolerating them.

    The socks sound great.

    Question: Did the facial hair fall out too? Eyelashes? I'm learning with your every journal entry, Mitch.

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  2. Just been catching up, man...wanting to let you know I'm still out here keeping you in my sights.

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  3. Mitch - I have been following your blog since early this year when I was diagnosed with MDS. I cannot begin to tell you how you have given me courage and inspiration as I stuggle to come to terms with this syndrome.
    Thank you so much for helping this 60 year old female from London. I wish you well and will follow your progress avidly as I to, await a donor.

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  4. Your hair will grow back curly, I hear. Then we'd all love to see you in a photo with your curly hair and striped sox!

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  5. All--
    Thanks for checking in. Yes the beard hair disappeared; the eyebrows are still there, but much reduced. And, yes, curly hair will be interesting, but it's going to be quite a while before that has a chance to re-emerge.

    Peppertree, I'm glad to hear my musings have been some help to you. Hearing you've got MDS is terribly shocking,especially since almost all of us who hear that bad news have no idea what MDS is. But, hopefully some of the new drugs will be available to you, like Vidaza, and that they'll work. It worked well for me but only for about five months. Still, I was being treated at the same time as a woman who was at least 10 years older than you and I, and she' been doing fine on Vidaza for almost three years, with no sign of let up. Hope springs eternal.
    mk

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  6. Mitch-
    Glad to see that you are able to focus on the positive in the midst of really scary stuff...I love your socks and think you should go into business promoting them for anyone with swollen ankles...keep the faith, friend, I am inspired by you as always..Vicki

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