My transplant coordinator Molly called me mid-week. Amazingly, the EBV level in my blood is now negative. I haven’t been on the Valcyte that long, so my team is surprised, to say the least. I believe it was your prayers. Thank you.
On the other hand, my WBC level hit 1.26. (Normal range is around 4-10.) Both the Valcyte and my Cellcept could be contributors to this, so they took me off of the Cellcept. To take me off of the Valcyte with EBV so recent is a risk, so I will finish out another month of that.
Either way, I was/am too neutropenic to stand any infections that may be floating around, so my surgeons started me on Neuopgen, aka the injections chemo patients give themselves to increase their immune systems. They prescribed me a series of three injections, and, once my insurance finally approved them, I picked them up yesterday.
I know a lot of people give themselves injections all the time – insulin, these Neupogen injections, all kinds of things. After you do it a few times, I’m sure it’s not that hard. And as a senior in nursing school, I most definitely know how to give an injection. It’s just the whole idea of pinching my own skin, darting a needle into my own body, aspirating, and pushing the drug into my tissue. Pressure and out. To my own body? Yes, emphasis on that. No thank you.
After hearing my fear, Molly suggested I go to the doctors office and have the nurse there do it. I called them and made an appointment. What a great idea, I thought.
But then I thought, what kind of nurse am I? I can give injections to patients but not myself?
So I gathered my mom and my dogs for support, sat at the kitchen table, pinched my thigh and darted the needle in. Aspirate, in, and out.
And it wasn’t as bad as I thought
I did it again today, and still, not as bad as I thought.
Honestly, I’d like to do this a few more times so I can see myself get really good at it, but tomorrow is my last injection. Wanting to give myself injections means I’m a nurse, I think. Or just an overachiever who doesn’t want to quit until I’ve perfected it. But on the other hand, I’m glad to see them go. The side effects of Neuoogen include bone and muscle pain, which I am definitely noticing.
You know, I never thought this would be part of transplant life. Yet I never thought I’d get EBV in the first place. And then again, I never thought my hair would fall out and the surgeons would be super picky about any help I try for my back pain. I never thought they would actually rescind my clearance to drive for a couple of weeks last year. I never in my wildest dreams would have imagined a scar this big, and I never thought it would still ache, 4.5 months later. I never thought I’d have this many insurance problems with medications, and I never thought medical bills could actually go this high. I never thought I’d be so scared, yet I never thought I’d ever find the kind of peace I’ve found in the last few months.
Transplant life definitely isn’t what I thought it’d be, yet for these extra days of life, I definitely can’t complain. I’m truly so grateful, and these are all small sacrifices for the gift I’ve been given.
Here’s hoping my white cells are in normal range Monday. Molly expects it to be really high. We’ll see!
Have a great weekend, sweet friends.
– Written yesterday 🙂