This immunotherapy stuff is so cool! What it does is take the brakes off the immune system so it can go after cancer with gusto. People with cancer have weakened immune systems due to various reasons, which contributes to cancer arising to begin with.
I’m in a clinical trial to treat my metastatic melanoma and leptomeningeal carcinomatosis. It’s a combination of two drugs, Yervoy and Opdivo. I’ll get four infusions, each three weeks apart. Some people can’t do all four because this drug combo is kind of toxic and stresses the liver, and some people have autoimmune responses that attack their organs. Yikes! I’m pretty sure I will avoid that — all the work I’ve done (pills pills pills) to increase my functional health has paid off. Other than cancer I’m actually pretty healthy now.
The first day was a breeze. It was a five hour infusion and we sat there with our snacks and books and felt magical and powerful. We did a mini ritual in the infusion room to welcome healing. It was awesome. The nurses were friendly and didn’t look at me like I was going to die right there in front of them, the way some people do.
Day One, the next day, I awoke with a massive headache and fatigue. Day Two, the headache was gone but the fatigue was still there and I felt like my body was turning inside out. By Day Three the pain along my spine where these new tumors are had significantly increased, and riding in a car was excruciating. I had no idea how many tiny bumps there are in a road until that day.
Ah, but the pain, we suspect, was from the immunotherapy doing its job. This stuff can work FAST. You know the pain of a sore throat? That’s from your immune system doing its thing, causing inflammation from white blood cells coming to the rescue and attacking your virus (remember all those 3rd grade filmstrips on the wonders of the human body?). Same thing here — we think my immune system went to town on those tumors and caused inflammation, which made the tumors expand some and push at my spinal cord causing pain.
Anyway, the pain has subsided significantly now, ONLY SIX DAYS AFTER TREATMENT. So, yay. Go, Talyaa’s immune system!!
That’s pretty much it. My fatigue is mostly gone and my spinal pain is waning. I have more energy and can think and remember things again, which was hard for months before my craniotomy. I still feel shaky when standing sometimes, and my body is still pretty weak, but I’m convinced I will rock this immunotherapy. Today I walked up all the steps from Swami’s Beach (50 steps? 60?) with only one brief rest pause.
I’M ON MY WAY BACK.
Today I’m mailing my California voter registration. This is worth mentioning because it means I’m planning to be alive to vote in more than a year. I reject this new “terminal” diagnosis of Leptomeningeal Carcinomatosis. Cancer is not the boss of me!
Oh, and my wonderful daughter Serena arrived last night for a visit before she goes back to school (an arts school a couple hours from us), and we’re already healing and reconnecting. My heart needed this so much. I feel way more complete already. I’m reclaiming a part of me that I hadn’t realized was missing until recently.