Unpredictability and Patterns

The every-other-week treatment schedule has become habit at this point. In at 7:45 am, IV and blood draw, discussion with the trial nurse, meet with Dr. Ani, get the blood test results, then infusion and home by 1:00 pm.

What isn’t habit yet is the unpredictability of immunotherapy. Unlike chemo, it’s not cumulative. Unlike chemo, side effects don’t occur in the first dose–they can crop up any time, even after several years. Today’s treatment caused the worst post-treatment side effects I’ve had since the very first treatment–headache, sore throat, body aches, feverish, fatigue. My recent CT scan was great–so clear that even the two remaining lymph nodes are normal and probably won’t be tracked next scan. So my immune system is probably not attacking cancer… but it’s revved up and attacking something.

Yep, my T cells are on the attack.

I have other auto-immune side effects, which might explain at least part of what my immune system considers an enemy. Last treatment, my thyroid levels were very low, so we increased the synthetic hormone (which takes 4-6 weeks to kick in) and I have a referral to an endocrinologist. I’m still having stomach/intestinal problems so I have a referral to a new GI specialist.

When I told Dr. Ani today that I’m more breathless than I have been in months, I got to see her “Hmmm” frown. It’s probably a combination of thyroid-related fatigue combined with bad allergies affecting my low-capacity right lung… but we need to rule out one specific rare side effect: my immune system attacking my heart. So tomorrow I have my first ever echocardiogram. We don’t expect it to show anything unusual because my regular CT scans get a pretty good look at my heart… but Dr. Ani wants to be certain. As soon as that’s all clear, I get a referral to specialist #4, a thoracic surgeon, to try to figure out whether we can safely remove the rest of the fluid in the lining of my lung.

It’s strange to go from “Hey, I’m almost cancer free!” to “I can barely get out of bed except I have to because I have a dozen doctor’s appointments.” I still consider it a good problem to have, though: I’m still alive and, most days, feeling pretty much OK. Some days I actually feel… almost normal?

That’s pretty amazing, when you stop to think about it.

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