I'm having a hard day. What my friend and I have come to call a "bad anxiety day." When there is a whirlpool of suffocating thoughts in your head that spin round and round, showing themselves again and again but never disappearing.
So, let's see. I relapsed in May. I underwent one treatment of Brentuximab (immunotherapy), tried for a second one, had a near-anaphalactic allergic reaction, tried again with premeds, got a second dose of Brent in, had a great response (all that pain was a good sign!) and a "normal" PET scan, tried for a third treatment, had near-anaphalactic reaction despite premeds, the pharmacist and doctor decided I was building up a sensitivity to the med, and decided to call it good. A little less than three months later, I had a night two weeks ago where I couldn't breathe. A Saturday spent at KU Med, blood work, CT scan, virus panel, nothing taken away from the whole damn thing but a shrug, a guess of asthma, and what looked like a slightly enlarged lymph node in my neck. Fast forward 2 days, PET scan. It showed some progression of disease in my neck and left arm pit. I already knew, so it isn't a big surprise. I know my body now, I know the signs, I know before they do these days. I've been on this road for so long. The big surprise is that it isn't a large amount of activity. It hasn't spread very far yet.
So now I wait. I wait until Friday, I wait for 6 more days. 6 days that stretch on in anxiety and circling thoughts. I wait to plan my life around treatment. Can I work? Maybe. It depends on if we try Brentuximab one more time. If we go down that road, it will be inpatient an KU Med, involving a huge dose of Benadryl (which makes me slide drunkenly in and out of consciousness) and constant monitoring to make sure I can breathe. Or we go back to good ol' fashioned chemo. Gemzar. Bald, sick, so so tired. Either way, I have PTSD at this point when it comes to getting treatment. My mind and body get tense and expect suffocation again.
This is only snippits. Bits and pieces. I'm sorry. But that's all I can do today.
Sometimes, it's all just too much.
