BMT Day 54: Great Expectations.
Wednesday July 08th 2015, 11:44 pm
Filed under: Family, Friends, Leukemia

I started the day off by doing some physical therapy with my insurance company’s mandated physical therapist. I like her and she’s good at what she does, she’s just not the PT I’ve grown to like to work with over the past seven years. I have another PT, Jackie, whom I’ve been working with since the first time I had leukemia, that I get along with very well and it’s just weird not working with her. But as I get energy and can build up to more than one session of PT a week, I’ll do two days with the insurance company’s PT and one with Jackie. Or something like that.

To say that my first PT session since starting BMT (which now stands for stem-cell transplant, because “bone marrow transplant” is outdated and a misnomer and I keep having to explain it to people, which is fiiiine and everything, but… let’s get out of this parenthetical notation) was difficult or exhausting would be incorrect. Actually, I felt pretty good while we were working out. We did all kinds of leg lifts and stretches and then she left and I collapsed on the couch. And Ferris Bueller (the dog) crawled on to of me and we slept for a couple of hours. So maybe it was just the PT leaving that exhausted me so much. Yeeeeeah, that’s the ticket.

What I think–in not fake terms–is that I have the willingness and willpower to do things, but, as I suspected, and have been told many times, it’s the energy I lack. Ironically, I never seem to lose the energy to beat up on myself. Now that would be something to lose. I woke up because Ferris (the dog) jumped off me, sensing it was lunch time. He doesn’t get anything for lunch–he just gets breakfast and dinner. But the fact that Mom was making lunch was very interesting to his sense of smell and to his sense of being named after Ferris Bueller (that rapscallion character of the 1980s). He is a lovable dog. He is a loving dog that knows when to cuddle and when to play. But my grandmother was right when she said that whatever you name your dog gives it the personality for that which you named it. Ferris Bueller the dog would definitely take advantage of Cameron’s dad’s car if he could. But he cannot, as he is a dog. And being in cars freaks the hell out of him.

Right, so, anyway, I think there were three points in what I was trying to get to: A) I ate lunch, B) I didn’t feel anymore energetic after eating lunch and taking a morning-long nap, and C) except in the ability to beat myself up for not feeling more energetic. This was a big disappointment to me. Why? I don’t know. I just thought that with the extra sleep and lunch, I might feel a little different than I had on every other single day of my unfolding BMT. But, alas, this was not to be. I went down to bed and tried to sleep, but instead just beat up on myself for not getting all my teeny, tiny tasks taken care of, which I don’t do any day, anyway. But it just hurt more today, and was easier to hurt myself today, and I don’t know why. I got depressed, which hasn’t happened much during BMT, or even the round of leukemia I most recently finished.

I finally fell asleep and was woken by my mom, who told me that it was almost time for my online young adult iPad cancer support group. It’s kind of amazing that these people were all were all picked for a grant to be studied, but we were picked by oncologist psychologists who know us and picked a very a good group. Tonight was our penultimate meeting, and when one of the moderator psychologists reminded us of that, my heart sank. These have literally been the only people my age that I could could talk to about my disease that truly understood what I was talking about ever. Not just this year. Ever.

It’s not that my normal friends don’t get me or don’t ask big, hard questions to try to understand what’s going on, but they’ve just never been through any of it. And, as well as I can sketch it out for them–and really appreciate them checking up on me and asking how things are how things are going and what they can do for me–I’m not going to be able to give them what I want to give them. Which is my perspective. I don’t want them to have cancer (ever) or go through BMT, but I do think what I’m going through is somehow impossible to truly understand without going through one’s self.

Which takes me back to this group; they just get it, because they have it or had it. Not necessarily pre b-cell ALL, but other blood cancers and we can relate. Even if someone’s been affected by for a much longer time, or someone just got it, we all speak the same language. And I’m not sure what I’m going to do without that language. The most comforting thing I was told today, was when I asked about being on BMT Day 54 and having no energy, and getting a response from all the people that remembered being where I was, walking around the block, and sleeping the rest of the day.

I think I’m going to need to lean on my non-cancer friends a little harder. I’m just so good at beating myself up which I don’t really know how many people know. But what it gets bad, it gets really bad. Lying awake in bad doesn’t help that at all; it just gives me time and a void.

I think I need to tell my friends exactly when I need them, rather than leaving them to figure it out. I think that will do wonders. And I think I need to stay connectected to the people in my cancer group, because that would be wonderful.


5 Comments so far
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I was happy to see that you were able to write this detailed blog post on top of everything else you did today and especially like the last paragraph. Keeping in touch with people who can relate to what you’ve been through via their own experience would be a great thing for you and vice versa. And yes, sometimes people need to be told when they are needed as it can be difficult to figure out when that is, especially among those who might share in the tendency to beat themselves up or if not that, at least second guess themselves. Maybe there’s some confusion about when to call and when to let you rest. That said I think you have a great network of friends, normal and otherwise, who would consider it an honor to be there. I know that simply telling you not to beat yourself up won’t really cut it and might even sound dismissive, annoying and annoyingly dismissive so instead I will just say this: you’re way more important than all of those little tasks that may or may not get done in a given day. Without you, they’re pretty much nothing if you think about it, and, the tasks are even closer to nothing if you don’t think about it.

Comment by Krista Harris 07.09.15 @ 12:22 am

17 years later – next week -( they wanted me to do it on my birthday July 8 but refused) I still say BMT because back then no one knew what a stem cell was. And yes I didn’t want to explain – took too much energy. Plus all the stupid questions which no one understood even after I explained everything. I know I mentioned the old people at the Allied Apartments running laps around me but they also made me get on a stationary bike and ride it 5 minutes a day. Pretty funny couldn’t do that either. Finally donated the bike a couple of years ago. Impressed they have PT’s now. Would have loved that. Do whatever you need to do to get thru this. And don’t forget when you feel like shit it’s easy to beat yourself up.

Comment by Ellen Beller 07.09.15 @ 6:35 am

Thank you, Ellen, that’s the kind of attitude I need in my corner! I appreciate all your advice. But, I especially want to congratulate you on 17 years free of this–that’s tremendous!

Comment by Reid 07.09.15 @ 9:08 pm

And thanks Krista, that’s a good way of looking at it. Thanks for your ongoing support throughout everything. Hopefully we can get in touch soon; I’d like to hear how you’re doing, too.

Comment by Reid 07.09.15 @ 9:12 pm

Reid, I’m sure you won’t remember me, but I was honored to share in your Dad’s 50th birthday celebration, when your group performed. Your last paragraph was so poignant. How we all wish people would tell us when they need us, rather than assuming we can/will figure it out. We CAN’T! So kudos to you for being bold enough to ask for a hug when you need it. Well done. And thanks for sharing your thoughts and feelings…

Comment by Sandy 07.09.15 @ 10:18 pm

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