The Heart of It All

“Your heart is not responding appropriately.” — My doctor

Dude, story of my life.

I’m still here, oddly beating heart and all. I’ve done two months of immunotherapy and all of the post-transplant checkup appointments. I recently hit my six month post-transplant mark and honestly thought I would feel better by now, but everyone keeps saying I’m still “so close to transplant”, to “be patient”. The latest doctor I met thought I was a year out and seemed shocked at my (good) state when I said six months, so that was reassuring. Still, I’m tired of feeling like I am dragging my body around. Being in your 30’s and feeling like you are 80 is not a super fun time.

A note on this fatigue, because I see this a lot: I am not tired. I am exhausted. Another patient and I were talking about how to describe this particular fatigue and came up with this: It’s like running a marathon, wearing a wet coat, with a kid on your back, in the mud. Unless you are regrowing the bone marrow/cells in your body, never try to out-tired-story a cancer patient.

My body has bounced back relatively unscathed and I am thankful for that. My lungs, which were at the most risk of damage, are testing at completely normal and show no real signs of damage. My hair and skin are bouncing back, appetite is mostly fine. I had one abnormal heart test, then a normal test, and now we are back to doing more tests.

In short, simple things like brushing my teeth send my heart rate to 150, which is what your heart rate usually hits when you are running. When doctors and nurses see my fast heart rate they instantly go to “you’re anxious”. I thought maybe it was subconscious because I haven’t felt anxious (and was once described as being so mellow that I was barely alive). But maybe! I met with a new doctor this weekend who listened to me, started off by saying that I seemed like a super chill person, and hey, maybe what I have been saying for four months is right. We are going to do a series of tests and the good news is that medicine can correct the issue, which is fairly common.

Immunotherapy has been uneventful for the most part. It’s not side effect free, but it’s not as bad as chemo. In short, I will be on this until the neuropathy in my hands and feet gets too bad. My hands and feet will start tingling and go numb and then we will either space it out or cut it off. I tend to have side effects that my doctors have never heard of and this has been no exception. I feel flu-like for about a week post-infusion and fatigued for about two weeks. They keep saying this is all most likely related to my transplant, but it’s happening like clockwork post-infusion so I’m going to disagree. Still, it’s tolerable and I have really enjoyed having two completely clear scans.

I’m almost two years into this whole thing and I am still shocked at how little information is available to people just entering it or going through it. It feels like I could write a hundred blog posts and still only start the conversation. Still, I’d like to keep trying. I’m hoping to launch a new project in a few weeks, so stay tuned and thanks for reading!