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jk, you're not in remission

When I left the hospital a week ago, I left under the impression that I was in remission. The folks at University hospital didn't see any trace of leukemia in my fourth bone marrow biopsy. And they said that made sense; FLAG-IDA can take a little longer to show its effects. So I went to my parents' house for a few days, got some home cooking, hung out with Pisco, and enjoyed long stretches of sleep and not being connected to an IV pole.

On Saturday I went home home, to the house I bought last year. At that point I was ready to enjoy making breakfast for myself and Brent, taking Pisco for walks, and even doing some housework. I could tell I had been languishing in the hospital when vacuuming made me sore. I also have a really hard time opening any kind of bottle or jar. Good thing I have my man hands within shouting distance at all times.

I've had a number of appointments back at the VA since I left. I had to finish a round of IV antibiotics, and I went back again today for lab work. I met with Dr. Bowles a couple times. And Dr. Bowles had some news. The testing of my fifth bone marrow biopsy showed 5 percent leukemia. How did I go from 0 to 5 percent in less than a week? Dr. Bowles said there may have been a mistake in the processing of the previous sample. I don't know details of how labs work, but I guess the pathologist he spoke to at CU didn't trust the results of the test, and said the fifth biopsy test would be more reliable. I don't know what that means, except that I'm not actually in remission.

I'll be going back to the VA hospital on Sunday for about a month. I'll be going through another round of chemo, this one with an even more exotic name than the last two. First there was 7 + 3. Then came FLAG-IDA. Now I'm moving on to GCLAM. This regimen includes a couple drugs I haven't tried before: Cladribine and Mitoxantrone. I guess one of these is blue, and turns my pee green, so that should be interesting. Maybe I'll take pictures for you. Because I know you're at least as interested as I am in my bodily fluids.

So, sometimes things are disappointing. But I'm lucky to have a wealth of experiences to draw on to get me through the tough shit. I was a rower in college, and if you didn't know, rowing is pretty grueling. Every single stroke in your race is just as tough as the last one, and you can't take a break or take it down a notch or give up, because everyone else in your boat is depending on you. During those years I was trained to take things one step, or one stroke, at a time. If I thought about the enormity of the whole race, I'd never get in the boat in the first place. If I spent all my time thinking about the big leukemia picture, I'd be crying all the time. But right now I'm just chilling with Brent and Pisco and watching basketball and writing a new blog post. And that's all that matters.
Melanie found this picture for me, from 1998-99, almost 20 years ago! I like this picture because I look so determined. I also like it because I have basically no hair. I hope you like it too. Thank you Melanie! Thank you Karen! Thank you Smith Crew!

Comments

  1. Fuck. I'm sorry Sarah. 😢 You know you have a huge audience of people who love you out here. Thank you being open and sharing what you are going through.

    And, I have to say the rowing analogy is a great one. As a former rower myself, I know what you mean about one stroke at a time. It's the same when hiking for thousands of miles, or running for dozens of miles, or living every day. We're with you every day. Big hugs. ❤️

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  2. I'm sorry, Sarah. This is a big ol shitburger; at least G-Clam sounds like a badass lady to have on our side.

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  3. Hello Sarah. I think the photo makes it look like you just remembered that you left your oven on at home.

    Oh, GCLAM. Sounds kind of ridiculous.

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  4. Love the picture! And the analogy. But don’t love this news. Wishing you wellness and strength with every step you take.
    But I am confused - when did you start watching basketball?

    ReplyDelete

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