I’m a few days behind my normal posting schedule this week. I got the second dose of my new treatment regimen on Wednesday, and while the side effects are milder than the previous infusion, I still spent a couple of days feeling less than awesome. But things keep rolling along, as they do. A few updates:
- It’s been about six weeks since I got the injection of Restylane in my left vocal cord. It definitely strengthened my voice, which is nice. It also seems to have triggered a tickle that sometimes makes it hard to talk without coughing. That irritation comes and goes, but it is nice not to feel like I sound like a Muppet all the time.
- I’m still undergoing swallowing therapy, and I had another endoscopy and dilation. The consensus is that lymphatic fluid build-up and fibrotic tissue in my chest and neck are contributing to both issues. My doctors are concerned that I’m not managing to squeeze enough nutrition through my restricted esophagus, and the gastroenterologist doesn’t want to keep dilating me only to have external pressure narrow things again. So on Tuesday they’re going to place an esophageal stent, to remain for four to six weeks. I’m a bit anxious about it, but I do need to eat more, so I hope it will help and not be too uncomfortable.
- Meanwhile, my left arm is currently mummified, wrapped in a multi-layer compression wrap my lymphedema therapist recommended and showed me how to do. I’ll continue that for about two weeks. It seems to be helping, softening the fibrosis in my arm and moving some of the fluid. Hooray! Sadly, now I’ve got some additional fluid backup in my neck, so I’m trying to stay on top of that with manual lymphatic drainage massage. Some days it feels like I’m playing Whac-a-mole.
- I seem to be growing some hair back! My oncologist thinks I may lose it again, but we’ll see; it didn’t fall out the first time I received the two chemo drugs I’m on now. I have a fuzzy old man’s head at present.
My new regimen consists of two chemo agents, carboplatin and gemcitabine, and an immunotherapy drug, pembrolizumab. I’ll receive four rounds total of that cocktail, each three weeks apart, and then undergo a scan, with hopes that we can then move to an immunotherapy-only infusion. Despite the side effects, my body does feel like it has an ally on board. It’s hard to explain, but the pain I was experiencing has lessened, so I’m hopeful the drugs are in there kicking some cancer butt.
I don’t really have any philosophical musings to offer today, for whatever they are worth. I’m going to sit on the porch, drink some tea, and call my dad. And at some point, with hubby Steve’s help, de-mummify and then re-mummify my arm. Wishing you a good wrap-up (hee-hee) to your weekend.
The process of bilateral breast reconstruction has a tendency to highlight other asymmetries. The first thing my reconstructive surgeon said to me when he looked at my pre-surgery chest was that my left rib cage sat a little more forward, was a tiny bit more prominent, than my right. I’d never noticed this particular (minor) anomaly, but it’s apparently just as common for there to be asymmetry in the rib cage as in the face. The difference in my bone structure became most noticeable immediately after surgery and during my early tissue expander fills; for a while the right expander lagged behind the left, making me look lopsided. I also discovered I have a pocket of fat on my right upper back, unmatched on the left, which appeared only when I didn’t have breasts to pull the skin forward and keep it flattened out.
I’ve often felt lucky to be in the body I am. Aside from some cranky tonsils, a couple bouts of pneumonia, and one broken bone, I’ve been hale and hearty most of my forty-seven years, and I’ve managed to stay active and maintain a healthy, if not altogether svelte, weight into my middle age without Herculean effort. Excepting the sixth grade, when my legs had a sudden growth spurt separate from the rest of my body that briefly turned me into a sort of hybrid stork-human, my parts are mostly proportional, and my face, while perhaps not symmetrical enough for Hollywood’s standards, is reasonably attractive.
I’m just vain enough to feel relieved that the obvious asymmetries that appeared in my chest and back are slowly evening out as reconstruction progresses. But I’m far more reassured by a different realization. As I walked into the dining room Tuesday night, preparing to sit down to dinner with my hubby, it suddenly occurred to me: I no longer have cancer. Granted, my treatment isn’t quite done–follow-up radiation is the standard-of-care for triple negative diagnoses, even with a complete response to chemo, and reconstruction will take a while longer. But the chemotherapy worked; the surgery confirmed it. No more need I say, I have cancer. Now I can say, I had cancer.
Hair also began to grow “back” in places I didn’t remember having hair before. Like the front of my neck. Large downy patches on my cheeks. As a fine fuzz began to cover my scalp, tiny hairs also outlined the helix of each ear in a soft halo. I know most humans, women included, have a layer of fine facial hair, but I don’t recall mine previously having been quite so thick.
As my eyebrows have returned, I’ve stopped having to draw them on from memory (tricky to get even, easily smeared). They’re coming in the same light-brown, taupe-ish color they’ve been since college. It’s nice to see a glimpse of the familiar when I glance in the mirror, instead of a surprised alien.
There’s an article that’s made its way around the internet about the 
I’m looking forward to experiencing that revelation again, whenever it finally arrives. I know it might be a while. Until then, I try to remember what my friend Sarah said when I shared my frustrations with her about my lack of productivity, my inability to do all the things I need and want to do.
Still Life, Beyond Cancer 