Day 35-36: The Truth Is That I’m Finding This Very Difficult.
Tuesday June 23rd 2015, 6:32 pm
Filed under: Leukemia, Me, Myself, and Reid

Day 36. Tuesday, June 23.  I really thought that once chemotherapy and radiation ended, I would be in the clear.  I thought I could blog everyday about what happened that day and about something I hadn’t yet blogged about from the past several months.  There are a lot of leukemia, hospital, and explanation stories.  But it hasn’t worked out that way.

That kind of jokey thing I keep repeating, “Should I blog today?   I should blog today, but I’m too tired,” that’s really how I feel.  In fact, there are very few days I feel up to doing much at all.  I sleep a lot, way more than I remember being capable of sleeping.  When I’m not sleeping, I’m exhausted, and my body wants me to be sleeping.

I try to reject that the best I can by reading a comic book here, watching some TV there, playing some music, or, if I’m really feeling like a pissant, I try writing in my blog.  My problem is that I simply can’t write every day.  It takes way more energy than I ever knew.  Not to mention all that other stuff.  Most days I just sleep and get mad at myself for doing it.

My nurse in the BIC yesterday (Day 35, Monday, June 22.) said something that made me feel a lot better than I’ve been feeling about myself lately.  She said that, originally, I had ten months to develop my bone marrow in my mama’s belly.  Now, though, I’m only 35 days old.  All of a sudden, that “new birthday” thing made a lot of sense to me.  She told me no one was expecting me to do more than I could do and that this is how it’s expected to be.  I’ve been hearing that a lot, “You’re supposed to be exhausted, you’re supposed to be in pain.  It’s okay, that’s how you’re expected to be.”

Frankly, that got irritating.  But when my nurse yesterday explained it in terms of age, it made a whole lot of sense.  I was also told that BMT is harder than chemo and radiation.  No one had ever told me this before.  It was a refreshing–if not long overdue–revelation.

I’m going to stop trying to write news for every day I’ve missed for right now.  It just makes me feel guilty.  In a perfect world, I would be collecting notes every single day since Day 0, and in a really perfect world, since January.  But my body is dedicated to creating bone marrow and changing over to Rachel’s immune system right now.  That’s where all my body’s energy is right now, and there’s absolutely nothing I can do to help it, except to stop fighting it and do what it says.  Which means sleep a lot and not write so much.

Which sucks.  What is a writer who doesn’t write?  I keep asking myself that.  But the true answer is something much harder for me.  But it’s a better question: What is a BMT patient who overdoes everything for the sake of satisfaction?  The answer is “sick.”  So I’ll keep writing when I feel up to it.  I will try my hardest not to beat myself up about that.  In the meantime, here’s some recent stuff that’s happened:

1) I received a bone marrow aspirate on Day 26 (Wednesday, June 10), the results of which showed that Rachel’s cells have taken over 91% of all systems they’re supposed to, except for my t-cells, of which her cells have only taken over 65%.  T-cells are the memory cells that learn how to fight off viruses and bacteria and even leukemia.  I was taken off one anti-rejection medication (don’t worry, I’m still on two more) in the hopes that that will strengthen her stem cell army’s resolve.  At this time, it’s not considered a big deal.

2) Over this past week-and-a-half, I’ve had this growth in my neck, right under my chin.

2.a) My beard fell out on some day I feel I haven’t published.  So, anyway, I have a “chin” now.

Back to 2) This growth hurt a lot.  Between seeing several nurse practitioners, having two ultrasounds, four CAT scans, and a procedure to go into my neck and pull out whatever was in there, it turns out, it was “an infection.”  It wasn’t a swollen lymph node or a tumor or lymphoma, it was just “an infection.”  Luckily, one of the nurse practitioners had put me on a very strong antibiotic before running all of these tests, so by the time the tests were done, I was already feeling better.

3) Today,  I wrote some new music for a song Joe wrote.  That was fun.  I need to keep practicing.

I’m tired now so I’m going to sleep before I get woken up again for dinner.


70 Comments so far
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Sending all good thoughts from Vermont. Don’t forget what Madame Pomfrey said to Harry Potter: “Regrowing bones is a nasty business.’ Go back to sleep. Then sleep more.

Comment by Amy Rubin 06.23.15 @ 7:12 pm

Amy Rubin, you are brilliant!

Comment by Scott Levin 06.23.15 @ 7:55 pm

From the perspective of someone watching a tiny human grow, they really do sleep a lot, so your nurses’ explanation really makes a lot of sense.

Comment by Jen Murphy 06.23.15 @ 8:09 pm

You continue to amaze and surprise me with your strength and resolve. Keep up the fight – the weapon needed for now is slumber!

Comment by Karen Lozow 06.23.15 @ 8:39 pm

I don’t know many 35 day old people that even write a little so you’re way ahead of the curve. Please try to be patient and kind to yourself. Even if you’re “a writer that doesn’t write” as much, when you DO feel well enough to write, you open up a window to greater understanding of what it’s like to persevere through chronic illness, and touch our hearts not only with your incredible strength but with the ocean of love and support that surrounds you. You are #reid strong

Comment by Lisa Soicher 06.23.15 @ 9:13 pm

Hi Reid, While I don’t know you and while I also live in the Denver area, I’ve been following your ‘progress’. I send you loving thoughts and wishes for strength EVERY DAY. Some day, once you’re immune system is back up and running and you’re back to full energy, I want to contact you — I’m beginning a ‘book writing project’ that I’d like to speak to you about. In the meantime, be gentle with yourself; listen to your body and never forget what that wonderful nurse told you about being a ‘baby building an immune system.”.

Comment by Nancy Cohen Nowak 06.23.15 @ 10:32 pm

I’m so glad that one nurse provided you with an explanation that resonated with you. You are on an incredible journey – thank you for sharing when you are able.

Comment by Dani Newsum 06.24.15 @ 3:52 am

congradulations on your engraphment-that was the worst part of the whole process for me. I just remember when they wanted me to start walking and those old Jewish Russian women would lap me around the block.
Your body need to focus on healing right now so listen to it. There will be plenty of time to write and happy second birthday!

Comment by Ellen Beller 06.24.15 @ 5:29 am

Hi Reid – Just read your blog above and wanted to tell you: a. how brave you are, b. what a good writer you are and c. let you know that I am thinking about you.

Keep fighting as you have done these past 3-1/2 years … and for now allow yourself to sleep …a lot.
Thinking about you.

Comment by Joyce Lozoq 06.24.15 @ 7:30 am

Reid, While I only know you through your dad’s posts, I’ve been following your remarkable resilience and courage as you struggle to get well. You are a gifted writer – your blogs never fail to bring me to tears. Sending warmest wishes and hugs to you and your family.

Comment by Marilyn Winokur 06.24.15 @ 8:58 am

I’ve never met you except through FB and your blog, but I can tell that you expect great things of yourself and you are in a hurry to get started. All in good time; all in good time. Your job right now is to concentrate on re-booting your immune system with your sister’s bone marrow. After that, you can move on to other things. I wish you only good things from now on. Be well; get even better.

Comment by Anita Fricklas 06.24.15 @ 9:49 am

Hi ReidStrong,

Your nurse is a wise woman and sometimes it takes that one person to remind us what we know deep down is true. I’ve always called nurses “aids” or angels in disguise :) Rest up dear friend, it will help you get to where you want to be where the amazing writer that you are will burst through even more and you will surprise yourself. Are you still accepting friendly visits?? Can we come see you soon? Jay’s schedule is much more open in July :) We love ya!!!

Comment by The Millmans 06.24.15 @ 7:00 pm

I admire your willingness to write…and your courage with that wicked disease..best wines … (I’m a friend of Scott’s)

Comment by ellie greenerg 06.24.15 @ 10:27 pm

Millmans: I am accepting visits, but only of the friendly kind! Just give me a call and we’ll set something up!

Comment by Reid 06.24.15 @ 10:38 pm

Jen: I guess my nurse was not so far off!

Comment by Reid 06.24.15 @ 10:40 pm

Amy: thank you for your reminder of Madame Pomfrey’s wise advice!

Comment by Reid 06.24.15 @ 10:44 pm

Nancy: thank you for following my blog. I’d very interested in hearing more about your book project!

To everyone else: thanks for the support!

Comment by Reid 06.26.15 @ 6:45 pm

still reading, still caring.

Comment by Jessie 06.26.15 @ 7:45 pm

Hi Reid, when I looked at your blogs, I didn’t realize I was this behind. As always, you’re amazing. I believe you have a soul of a writer and that doesn’t change. Even if the words are more in your head than in black and white for a while. Even the way you regard everything will always be through the eyes of a talented writer. Although this process must be incredibly difficult, I am glad you received acknowledgment from the nurse that BMT challenges you and your body even more than radiation and chemo. The important things you want to say (and which you already DO share) will remain with you for when you are more able to write. Rest is a wonderful commodity. I think I will sleep now and save your next blog for tomorrow. Thanks, Reid, for all that you do. You are brave to share; brave in many ways. Hang in there, Karen

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