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.
Wrapping in progress
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.
Check out that peach fuzz!
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.
My dear friend Sara is visiting this weekend, so I’m focusing on enjoying her company. We first met in 1993, shortly after we’d each graduated from our respective colleges. For many years we were able to meet up at least once a year for a visit–we took the photo we’re holding below during an outing to Six Flags over Georgia in the early to mid-nineties. But it’s been a while, so there’s much to catch up on! We’re taking advantage of our vaccines and renewing our tradition.
I’ll be back next week with a longer post. For now, I’m going to focus on recalling old memories and making new ones, and sharing lots of laughs. Cheers until then!
We need to talk about death. Not mine, which isn’t imminent, as far as I know. But generally, as a society, we’re really bad at talking about death, which is a bit ironic, given that it’s the great common denominator, the only certainty.
Are you uncomfortable, reading this, hearing a cancer patient raise the specter of death? Is your first impulse to want to reassure me, change the topic, tell me I’m going to beat this and it’s not something I need to worry about? If that’s your initial response, I urge you to pause and take a deep breath. And not so much for my sake, but for the sake of all the cancer patients you might encounter in your life. Because I can almost guarantee that anyone who’s ever had a cancer diagnosis, of any kind, has confronted thoughts and feelings about death. The word “cancer” has a way of foregrounding one’s mortality, even if the diagnosis isn’t immediately life-threatening. And you don’t do anyone who’s in that space any favors by shutting down the conversation with well-intentioned reassurances, however unlikely death may seem or how uncomfortable the subject makes you. People need space to be with, and share, their thoughts and feelings about death. It does, finally, come for us all.
Glasgow Necropolis, Scotland, 2019
I have three specific fears about death. First, I worry about the pain my death will cause the people and creatures who love me. It makes me especially salty at the universe that my husband Steve, who lost his first wife to MS, might have to face losing a spouse a second time. Neither he nor my stepsons should have to go through that. I worry about the impact my early death might have on my parents, and my brother’s family. My friends. My cats, who I’m afraid would be confused were I suddenly absent. I’ve always been a pleaser, and I really don’t like the idea of being the source of hurt and grief for anyone.
I also fear experiencing physical pain. Cancer isn’t known for being a fast, painless way to go, so if that’s what takes me, I can only say I hope I have access to lots of good drugs.
My third fear is that I’ll depart this earth with dreams unrealized. I really would like to get my act together to turn all this writing I do into a book. I’d like the gift of holding a book with my name on it in my hands before I die. You’d think that would mean I was working diligently toward that goal every day, but focus and energy aren’t always easy to come by. And the other thing that’s kept me from realizing that dream all these years–fear of failure–hasn’t magically disappeared with my diagnosis. So I’m still working on it.
The New Yorker, Carolita Johnson
I suspect my fears are fairly common ones, shared by many.
I’m not sure if I fear death itself. I know many people are comforted by specific beliefs and visions of an afterlife, but if I’m completely honest with myself, the only thing I can say truthfully is that I don’t know what happens when we die. I know that matter never disappears, only changes form, and so the energy that is me will continue on in some form. Is that a soul? I don’t know. Is there another plane I will remove to and keep my awareness of self and my identity as an individual? I don’t know. I’m not sure I’m even attached to the idea of maintaining a singular identity after death. Maybe it’s more like what The Cryptonaturalist on Facebook describes in a recent post: “We could name each individual raindrop and then mourn its loss when it reaches the sea, but we understand that the water was neither lost nor diminished by rejoining the vastness from which it came.”
Don’t get me wrong. Mourning someone’s death is natural and necessary. And it makes me sad to think about the prospect of leaving the people I care about, to contemplate a world without me in it. While I don’t like the idea of being the source of anyone’s grief, I hope I’ve had enough positive impact in my small circles to think such a world would be at least a little bit diminished by my absence. But an exit is inevitable.
If there’s a heaven, Roscoe will be there.
I do like the idea of an afterlife in which I would get to see my beloved Roscoe kitty again. And Tiko, Eliza Jane, Bliss, Lola, and Imoh, not to mention the cats and dogs of my youth. That indeed sounds heavenly. In recent years I’ve thought a lot about reincarnation. Something about the concept makes sense to me. Sometimes I think there are a certain number of souls in the universe, and they reincarnate to inhabit different physical beings through those beings’ lifetimes–but there are more physical beings than souls, so not every human or creature has a soul. That would explain why my cats have always seemed deeply soulful beings, while some of the humans I’ve encountered act soulless and cruel.
If someone you know has cancer–terminal or not–and they raise the subject of death or dying, please: let them talk, and really listen. Needing or wanting to talk about death does not mean that someone is assuming they’ll die soon, that they want to die, or that they’ve given up. It means they have complicated thoughts and feelings they want to process. It means they recognize that death is part of life. It means they trust you enough to be vulnerable with you. Stifling the conversation does not stifle their fears or concerns; it tells them you cannot or will not be fully available to support them when they’re wrangling with the big questions.
It shouldn’t be awkward or uncomfortable for any of us to talk about death. The unknown is scary–it scares me. But the best way I know to manage a fear is to face it. And that’s always easier when someone you care about is standing by your side.
Still Life, Beyond Cancer 