BMT Day 50: Happy Independence Day!
Saturday July 04th 2015, 11:27 pm
Filed under: Family, Leukemia

This Independence Day, I cant’t tell if I felt a strong lack of independence or if I just didn’t get to do what I wanted to do.

I had trouble sleeping during the night and was in an unpleasant half-awake-fog, half-dreaming-state until I finally dragged myself out of bed at 11:00.  My mom entered just as I was getting up and told me that she and my dad were concerned with the lateness of the hour and had decided one of them should check on me.  I appreciated the thought.

Once I was up, I realized my neck was still stiff and my head was still hurting. I know what’s going on inside my body.  It’s building this new immune system and it’s also fighting this clot that’s causing a lesser amount of oxygen to get to my brain than should be. Both are very important.  I just wish I could catch a small break, like the Lovenox kicking in making it so I can turn to the right and look up without being in extreme pain.

I know there are people going through BMT with far worse problems.  I’d just like to think about myself for a while. Like why does Lovenox have to give such big welts?  And why do some bleed after the fact?  That’s just stuff I don’t want to be dealing with.

I had three goals for the day: shower, shave, and BBQ. it wasn’t a big BBQ, just my wonderful aunt and uncle coming over.  But I like BBQing and don’t get to do it often.

I took another nap before showering because I felt very dizzy. When I got up, I felt very capable of doing everything on my list. And watching the end of 1776 with my dad.

I had my dad tape up the outer portion of my port that already has an inner layer of tape dressing on it to protect it through the week.  It needs another level of tape when I shower because my port absolutely can’t get wet, as that invites bacterial infections. He used (Christina) Reynolds Wrap and strong hospital tape to cover my everyday dressing.

I took my shower, got out, and immediately realized there was a problem.  My dad had accidentally taped the new tape to my normal dressing; there was no way to peel it off other than to also peel off the most important part of of my normal dressing.  We had to peel off the normal dressing that normally protects the tube that normally goes into my chest and isn’t supposed to be exposed to anything.

We immediately had to go to the hospital to get my dressing replaced. Which, on a day like today, didn’t take very long.  It was just frustrating.  At least, after my shower, I got to wear my new Captain America shirt my dad had given me, in honor of America.  And comic books.

We got home and I felt dizzy again. We had told my aunt and uncle to come a little late, so I decided after a while to shave. I knicked myself right in the middle of my upper lip. I’ve had a beard for so long, I don’t remember how to reach these hard spots.

By the time I was done shaving, I was once again dizzy. My dad took on the grilling duties. In the end, it was a nice night with good food and good company.

I guess what I’m finding most difficult right now is that things aren’t going the way I plan them or want them to be.

Hopefully they will soon.

Goodnight! Happy July 4th!


3 Comments so far
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Happy 4th, Reid. Glad you were able to enjoy a barbecue with family. Am definitely sorry, however, to hear about your fatigue and neck pain. I can’t imagine how frustrating it must be to want a little break from reality like a good sleep offers, and then not be able to sleep very well. I hope that changes soon and you acquire your own sense of freedom that you so deserve. I still want to read some of your other posts. Hope your writing is in a place where it feels good to do and is not taking a toll on you. Hang in there and thank you so much for sharing, Reid.

Comment by Kare 07.05.15 @ 12:52 am

So sorry to hear things didn’t go as planned and that you are still having so much fatigue & pain. I know the 4th is one of your favorite holidays! Glad you were able to hang out with family & BBQ! Thinking of you!

Comment by Jackie Honeyfield 07.05.15 @ 5:58 am

Here’s hoping the Lovanox kicks in soon so you can have some pain relief and have some more mobility. That you have resolved to keep writing and are looking forward to all the things you could do in the future while doing what you can now shows a great independent spirit. I feel for bmt patients who have it worse and it’s good to recognize what others are going through but I agree that focusing on you for a while is healthy. I’m glad you got to enjoy the holiday with family despite some frustrations along the way.

Comment by Krista Harris 07.05.15 @ 4:35 pm

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