May 16, 2025
Feels like it's been a while since I gave a report from the realm of Very Serious Disease. So here you go...
This week I had a follow-up with my vascular surgeon regarding my new dialysis fistula. He did the surgery to place it and removed my worthless peritoneal catheter about six weeks ago. The fistula is healing well, and has good blood flow through it. I'll be able to start having dialysis done through it in a couple weeks.
I guess because I had no what a fistula was until I got one, I should explain what it is. In my case, an ultrasound was done to map out veins in my non-dominant arm (my right). Then a vascular surgeon did an incision in the crook of my arm to get access to a vein and artery determined in the mapping. He grafted the artery onto the vein to increase the total blood flow through that vein. Over several weeks, this causes that vein to grow significantly, and ideally it will be raised enough to be visible under the skin of my bicep. That gives an easy access point for the dialysis techs to insert the needles for blood to go out, get filtered, and go back in. Once that's used successfully for three weeks, I get to have the catheter that's been dangling out of my right shoulder and running into my skin, up and over my collarbone, and back down into (I believe) my aorta just above my heart finally removed. It's been in since September. They're usually only used for a couple months because they carry a high risk of infection compared to the fistula.
I also had my fourth round of pembrolizumab immunotherapy for my cancer. I've been having side effects, but none of them are unexpected. Certainly none are as bad as when I did the two rounds of ipilimumab and nivolumab previously that had me in the hospital four times in two months and knocked out my transplanted kidney and my own thyroid. I usually get slightly scratchy throat for a couple days after each treatment. And each dose makes me fatigued, and that effect is cumulative. It's a little worse and a little longer each time. On days I have dialysis, the two combine to make me light-headed and a bit wobbly on my feet at times, so on most of those days lately I've had to not drive myself to dialysis. (Which I hate because I want to do as much on my own as I can, but I get solo time with my mom that I don't get a lot and fun rides in her new big pink fire-breathing Jeep Rubicon 392). I've also had some nausea and vomiting here and there, but I've got good medications for that now. As far as how well the treatments are working, we'll know for certain in a few weeks when I have another PET scan. But for now, since I have a form of cancer that is showing itself in visible areas, currently in lymph nodes behind my right ear and one on the right side of my neck, I can actually see my cancer getting smaller. One spot is almost back to normal, and the others seem to be shrinking. I am so grateful to be living in a time where we just now have these amazing treatments that work with the immune system so the body itself can stave off and hopefully in my case get rid of cancer. It's been well over a year now since I was diagnosed with melanoma, and I feel lucky to not only be alive, but seeing what looks like the beginning of the end of at least the cancer. Then I can move on to the process of having another kidney transplant, and hopefully keeping it this time.
In the meantime, I've been doing what of my usual craft work I can manage the energy to do. Mostly embroidery, with some crochet and hand sewing thrown in the mix. My work room is basically a neglected disaster area, but I've started a very gradual process of getting it cleaned up and reorganized because I'm itching to get behind my sewing machine and make a quilt, which I haven't done in a while. I've also been taking my Jeep out for rides here and there when I feel up to it, which isn't a lot lately, but hopefully I will be able to do more soon. It's about to be summer and I'd love to take advantage of my first vehicle with a removable top.
