Day 32: Growing pains.

Day +32. My counts from my appointment yesterday are all in the normal range except for my red blood cells and lymphocytes. So insane! I don’t know how they climbed so quickly! Neutrophils, white blood cells, platelets, all in the normal range. The RBCs usually take a while to get back to normal, but each week they are increasing slowly. The lymphocytes (T cells, B cells, NK cells) will take a while to come back too as I rebuild immunity to everyday antigens or pathogens.

The CMV viral load is about half of what it was last week, which means the meds are working well. I imagine I’ll be out of the “dangerous” range later this week. But I’ll have to continue on the antiviral meds for another 4 weeks just to make sure it doesn’t come back guns a-blazing. I still have the annoying congestion but the cough is better and the mucus is thinner and less abundant. Yay for getting better!

I’ve slowly been regaining energy as well! I try to make a goal to walk to a different spot in the city (and back), to different parks, cafes, etc, just to break up my routine and sort of feel normal again.


Sometimes in life, you’re disappointed by people you most rely on. Sometimes your own family members are the ones who disappoint you. Sadly, this is the case for me. For reasons I’d rather not discuss here, my dad decided to leave to go back to Texas. I spoke with my NP asking if I really need a 24/7 dedicated caregiver since I’m self-administering meds, can make my own food, and can take cabs to my appointments (since I still can’t take public transit). For him, he thought it was okay but he would have to get the okay from the care team before giving an absolute green light. Until then, my friend Graham has graciously offered to be my temporary caregiver helping where he can and where I need any assistance. But let’s be real, I’m more than self-sufficient to be able to take care of myself.

I’m very saddened by this turn of events, but it was clear that my dad wasn’t comfortable here and after talking to my sister, he felt like he didn’t know how to take care of me. Whatever his reasons, I’m incredibly disappointed and really hurt, heart broken even. I understand and empathize with him so I’m not mad, but that doesn’t take away the pain and sorrow. I know it’ll pass, but until then I’ll just keep carrying on receiving support from my amazing friends and “chosen family.”

I’ve said this time and time again, but when life gives you lemons, squeeze out the juice, mix in some gin, simple syrup, and champagne, and enjoy yourself a nice French 75!

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3 thoughts on “Day 32: Growing pains.

  1. It is a hard thing to be disappointed by people who you know care about you, and want to care for you, and yet cannot overcome their own doubts or difficulties in order to do so. I am glad to hear you have “chosen family” to support you. That makes a big difference.

    Thanks for sharing your experiences on this blog. I appreciate the frankness and nuance with which you tell your own story, as well as the many joys and difficulties that mark your days. I only wish we’d become better friends when we were living in the same part of the country. I hope you had a great day, and that you can get back to being your driven self sooner rather than later!

    -S

    Like

  2. It is a hard thing to be disappointed by people who you know care about you, and want to care for you, and yet cannot overcome their own doubts or difficulties in order to do so. I am glad to hear you have “chosen family” to support you. That makes a big difference.

    Thanks for sharing your experiences on this blog. I appreciate the frankness and nuance with which you tell your own story, as well as the many joys and difficulties that mark your days. I only wish we’d become better friends when we were living in the same part of the country. I hope you had a great day, and that you can get back to being your driven self sooner rather than later!

    -S

    Like

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