Day +85. My counts dipped today back into the “let’s be careful with everything again” range. Food restriction, public restriction, and more rest are in order. Over the past few weeks I’ve gone from the yay, I’m seeing progress every doctor’s visit to yay, we’re playing games with my meds to keep my counts in a good range. This week happens to be a low week due to a different antibiotic that I switched to recently (to Septra from Dapsone) that’s more strongly immunosuppressive. Also, the immunosuppressant I’m taking, cyclosporine A, was relatively high in my blood.
To break it down:
High immunosuppression (via drugs, etc.) = less functional marrow.
Less functional marrow = lower blood counts.
Lower blood counts = more tired Min who’s cooped up inside.
These things compounded together, plus some other things that’re prolly going on but are not graft failure *crosses fingers and does tribal rain dance*, help explain the drop in counts. But I’m not discouraged. I was never guaranteed at any point that my counts would ever completely stabilize during the recovery process. Heck, I’m not even guaranteed at any point in my life that the graft won’t just decide to fail, randomly. #BMTtransplantproblems
Overall though, my health has been on the up and up! Despite my right ear still being 50-80% deafened (still waiting for my ENT appointment) and the sparse rashes/red bumps on my torso/head/neck, I really don’t have much to complain about. I’m still super grateful that I haven’t experienced any of the more severe GVHD symptoms (e.g. vomiting, diarrhea, cramping, excessive nausea, etc.).
Apologies for being so slow (lazy… tired?) to post updates! I’ve been getting out more to walk and do things in public. I unfortunately didn’t win the $1.5bn Powerball lotto though.
I went grocery shopping. Never thought it’d feel good to say that. I saw movies, in the theater. Star Wars and the Revenant to be exact. Exciting and gruesome, respectively. I played tour guide. For my mom. I took her out for a hair coloring and dinner for her birthday. I also got a rental car and we picnicked at Half Moon Bay, took in SF views at Twin Peaks, and drove over the Golden Gate Bridge. She really enjoyed the beach at HMB. She said it reminded her of where she grew up in the motherland by the same ocean (see: Pacific Ocean). I’ve been catching up with friends over coffee, ice cream, and meals. Slowly but surely getting back into a rhythm and re-crafting my independence/life.
My mom leaves next week. It’s crazy to think that she’s been here for just under three months. She was very resistant to booking the flight, but really I think it’s time for her to go. Not because we’re fighting or that I don’t want her here because honestly, it’s so nice being pampered by the woman who birthed you and knows you best. Breakfast made first thing in the morning, lunch ready to go, and dinner hot and served when you sit at the table. Who could complain about that?
I feel though, at this point in my recovery, I’m unable to keep progressing with her here. Sure, the special treatment has been super helpful and absolutely wonderful, and I’m beyond grateful and have a new appreciation for parents/my mom, but I’ve reached a point now where I need to start doing these things for myself. It’s really difficult to tell my mom, “No, I don’t want your eggs and bacon, I’ll have my granola and yogurt instead,” as she waltzes into my room with a tray for breakfast in bed. Who doesn’t like breakfast in bed?
There’s really no other way to break into independence than to jump into it head first. I’m well enough and strong enough to go grocery shopping, do my own laundry, and go about doing simple daily tasks — trust me, I’ve test run everything. The sooner I can get back into the routine of taking care of myself, the sooner I can get back to feeling normal and to living my life.
Now, this is all great and dandy and idealistic, but I’ve been burned before and I won’t let it happen again. I’m still being very cautious and careful with myself, taking as much rest as I need. I’ve gotten really good at listening to my body. What’s that you say? You’re tired from walking yesterday? That’s okay. Let’s binge watch a whole season of ‘Happy Endings’ today. Feeling a little achy? Let’s stretch it out and take it easy today. [The internal monologue I have with my body is ridiculous.]
Another great perk of progressing further in my recovery is that my brain is clearing up too! I solely base this on the fact that my personality (see: sass) is ramping up and the quick comebacks have resurfaced in conversation. #checkyoself
At the Golden Gate Bridge. 🙂