My bone marrow needs a pep talk

TL; DR version: Last weekend was rough but doable. Same schedule drama as last week. 🙂 No treatment this week because my neutrophils are still low, even after the injection. Path forward: 2 more injections (one today), wait, hope for better numbers on Tuesday and then hopefully treatment next week. (My bone marrow needs a pep talk!)

Last week was treatment #7 – all 3 drugs. Overall it was ok, not fun, but not horrific. They aren’t kidding when they talk about chemotherapy/immunotherapy being cumulative. While it’s all still doable, I was a lot more tired this time around and the nausea was a bit rougher. I slept a lot. So much it was hard to get all the fluids in and between that and not eating as much as I should have that day I didn’t help myself. I have some lessons learned for the final round for sure. It all mostly resolved by end of the day Monday, but the step changes in feeling better are strange. Sunday night in the space of an hour or so I just suddenly felt a ton better. It’s a bit bizarre. Although, I did sit down while brushing my teeth due to fatigue both times on Sunday and that’s a humbling experience.

The other humbling side effect is the shortness of breath. I get winded walking from my car to the building at work now carrying all my bags. The energy reservoir is decreasing in size for now and that’s hard.

That decrease in energy is part of the reason I spent much of the week really angry about the lab work scheduling and timing. Despite it seeming perfectly logical to me to make one small tweak to the 1st round of labs each week the team is flatly refusing to make an adjustment. This is frustrating because I just don’t have as much energy and I don’t want to “waste” it running around at the last minute for injections and bloodwork when the pattern is pretty clear on how this works. For me, this feels like a minor adjustment and for me would be a huge difference. There is clearly some policy or charging practice that makes the change that would work not something they’re willing to do and I’ve lost too much sleep this week being angry about it. So, I’m trying to let it go and figure out what my next steps are there.

As the paragraph above implies this week was a repeat of last week in the sense that my friend and I were driving to treatment and my labs confirming I could get treatment hadn’t come through yet. There was an extra special snafu this week that meant they actually called and told us to not come because they weren’t sure when the results would come in. (The special snafu was that my “stat” lab which is supposed to result in 4 hours was apparently on it’s way to San Diego for processing vs. somewhere locally..although it did ultimately get processed in Torrance. I’m guessing that the courier wasn’t having a good day. Clearly it didn’t make the 4 hour timeframe…more like 6…)

The bummer though was that when the labs finally came in my neutrophil number had sunk even lower than it was the other day before my injection. (They are really low now…) So, no treatment for me this week. I went in for an injection instead and will go again tomorrow. We’ll do labs again on Tuesday so that hopefully I can do treatment again next week. I’m disappointed. I do just want to keep going, but all I can do is keep going in a different way – there’s not much I can do other than these injections and try to rest and heal. So, it’s going to be a quiet weekend…

My immune system is pretty tanked which is a bummer. The nurses basically said…yea, your bone marrow just doesn’t work very well and you don’t bounce back as quickly as others. So, that’s why my bone marrow needs a pep talk…heal thyself bone marrow…I need those neutrophils! 🙂

Maybe this means I get a super tiny glass of wine this weekend? Not sure. I’ll ask about that tomorrow. Could be a silver lining?

I hope that all of you have an incredible 4th of July weekend! I am grateful to all of you for all you do for us – all the comments, check-ins, support, rides, meals, fun gifts, cheerfulness, and just everything (because I’m sure I’m missing something…) …so grateful. We are so lucky to have each and every one of you!

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