Yesterday morning, I got the kids off to school and headed down to the hospital for my first dose of ipilimumab, as I start my Stage IV treatment journey. My wife caught the early train back from NYC, got off in Providence and met me there. First, we met with one of the clinical social workers who specializes in oncology and talked about (1) how I was handling things, (2) how my wife was handling things and, most importantly, (3) how we explain everything to the boys. She thought we were doing well on all three counts and gave us some other reading materials and some online resources for each of us. I’m glad we talked to her.
My attitude is both good and possibly bad. I told her I don’t feel anything about my melanoma; I’m not sad or angry or disappointed or anything else. I can’t tell if I’ve accepted it, or if I’m in denial. On some level, it’s bothering me that it’s not bothering me. We talked about the care giver stress, balancing job and kids and home and job and me and job and laundry, etc. She gave us some resources to look at, both for us and the kids. She said we’re doing well with the kids and we are doing a good job keeping the communications open. We need to talk to their teachers and the school nurses to ensure the boys get support (if needed) at school, too.
After that, the doctor came in and sat with us to review the treatment plan and talk about my ongoing back pain. Based on conversations with the Radiology Oncologist and my doctor, we chose to do radiation concurrently with the ipilimumab to alleviate the pain. Turns out doing both simultaneously looks to have a higher rate of success. Who knew?
The ipi treatment was just like the interferon – I got a little saline solution, they brought down my outrageously expensive dose (I was looking for the gold flakes á la Goldschlager, but there was nothing) and hooked it up and then I chatted with my wife for about two hours. I must admit I’m a big fan of not having immediate side effects. Going through fever and chills was never fun.
I got a late start on my ipi, so we were getting calls from Radiology asking when I’d be down for the prep work. When I got down there, we talked to the doctors and I went in to get prepped. Prepping consisted of me climbing on a hard, cold table so they could align me to the machine and tattoo me with reference points to ensure I got put in the exact same position every time. Tattoo Number One was on my spine and OMFG did it hurt! Fortunately, she got it marked sufficiently so I didn’t need another stick. The other two tattoos are on either side, I imagine like a big triangle – I haven’t seen them yet for reasons to be explained. So when they had me marked up and complete, I went to get off the table and inadvertently found out what Level 10 pain is. I think the poor radiologists were taken aback by the level of pain.
I was scheduled to come back next Thursday for my first treatment, but the ladies felt so bad about my pain they coordinated to get me my first two treatments last night and this morning. Oh, and my oncologist decided I should remain overnight to allow them to help get my pain under control. I checked in, got some morphine and did my first radiology at 8:00 pm. Once I got back to the room, I kicked my wife out so she could get some sleep. I slept off and on, probably about four hours total, until they came in at 4:30 to take me down for my second radiology treatment. At 5:00 am.
Part of my failure to sleep was pain. I tried to get up to put on the pajama pants and dressing gown, but my back wouldn’t cooperate. I decided to sleep in my clothes, in the recliner. Oh, and I have a roommate, too. He’s an elderly gentleman who keeps setting off his bed alarm when he tries to get up. I feel bad because I’m not too sure he knows where he is, or why he’s here. I really hope someone comes to visit him today. To be alone and not have all your wits about you seems worse than cancer.
So, anyhow, the treatments went well. I’m not sure when I get to leave. At least my wife will show up in a half hour with coffee and a blueberry muffin. And my iPad charger (18% battery as I type). I have a lovely, sunny view of an internal courtyard. Nice high clouds, looks like a good breeze in the trees – a lovely day to spend in Rhode Island Hospital.
My next radiation treatment is Tuesday morning and my next ipi treatment is in three weeks. So far, so good!