It looks like I haven't written in a year, but I have.
I've started so many posts, but stopped, deleted, saved to drafts. There's just always so much. Always too much. Years of medical jargon and situations that my peers, understandably, cannot wrap their heads around. My reality is unreal. It can be lonely. Some days I handle it better than others.
For starters, in my short periods of remission, physically, I find a new normal. I try to be grateful. I chastise myself when I'm not. I should be happy! Be here now! I'm still alive! APPRECIATE IT, DAMNIT! Tick tock! Mentally, emotionally, I'm a wreck. Going from an active fight to a passive wait for the next lymph node to pop up. With less appointments in Kansas City, I was able to schedule myself with a therapist for a while, who helped me understand that I am dealing with generalized anxiety disorder and, initially surprising to me, PTSD. It clicked. The repeated trauma of treatment. The looming threat of death, ever backing away, then moving closer, then back again. Learning these things about myself has helped me cope, and of course, I'm still learning.
Let's see. The last relapse? I knew. The same setting. Sitting on the couch, my hand abscently touching my neck, I feel a hard little pea. I wait and watch. No descernable change in size over a month. But then the familiar itching in my palms starts, and then the scan comes, the biopsy confirms, and it's back to our shortening list of options.
This time? I relatively new immunotherapy called Nivolumab. It essentially ramps up your immune system to an insane degree to identify the "checkpoints" at the cancer cells it was allowing to slip by. Seek and destroy. However, since I have a donor immune system from my Allogenic transplant, the biggest risk with this was that while my immune system would attack the tumors ferociously, (Graft vs Tumor effect) there was a distinct possibility that it would also attack my own body, known as Graft vs Host Disease. Any guesses as to my luck? We'll get to that.
Rewind. The eve of my 30th birthday, I took my first abulance ride. Inpatient at KU Med, wracked by alternating drenching fevers and body shaking chills, I was diagnosed with pneumonia and two viruses. I was down to 99 pounds. Initially tachycardic and septic. It was absolutely terrible, but in the words of Monty Python, "I got better!" Ah, remission was bittersweet.
Pneumonia again around Christmas this year, after my relapse and one Nivolumab treatment. The CT scan of my chest that confirmed pneumonia seemed to confirm sonething else. The tumors were smaller. The Nivolumab seemed to have a positive response! I'll take it.
Enter Graft vs Host Disease. (GVHD)
I was inpatient again a few weeks ago, over New Year's. My liver enzymes were climbing up, concerning, then alarming. The highest threshold for normal liver enzymes is around 50. I spiked to 1100.
High dose steroids. Hell. Its hard to explain, but my mind is not my own on them. Detached, unable to think deeply or concentrate, read (or write) for very long. I barely sleep. I'm not myself. But I dont have the luxury of control. I swallow my pills. I take my injections with a smile. I become a witness to myself. I hold it together because this is my life. I will take it to the alternative.
A liver biopsy confirmed GVHD of my liver. I began 4 more medications to combat the damage, watching everyday for the liver numbers to drop. Slowly, slowly, they do. They still are. We got down into the 300s yeterday. Still scary. But better. I'll take it.
A fifth therapy has been introduced. Photopheresis. Three days a week, at KU Med, I sit for three hours. my blood is extracted, centerfuged, and treated with a drug that makes it sensitive to UV light. Then it's blasted with said UV light and pushed back into me. This kills off T-cells, in the hopes of calming the severity of the reaction of my immune system. Usually, it would be through a large gauge tube through my port, but my port is being uncooperative at the moment. So it's a 17 gauge needle in the arm, until we figure things out. I'm hoping my veins hold can hold on. This therapy is long term, results, if any can take months. It's time consuming, but not toxic, with very manageable side effects. Seriously, though, sience is so neat. Also, the nurses here? The best. That makes all the difference.
You know, I don't feel the needles anymore. Even as the size goes up. Is it the skill of the incredibly specialized nursing staff? Have I become desensitized? Compared to the pain I've endured in the last few months, it seems plausible. I feel like Im just a bystander. It's another feeling. It's something I'm watching happen to someone.
To be continued, promise.
