Every road I go down in the cancer journey seems to lead to increased vulnerability. I sit in rooms half-naked and get poked, prodded, weighed, and measured by dozens of strangers. There is a blind reliance on strangers that didn’t exist six months ago that I will never get used to. At some point in each appointment I have to disconnect. There is only so much information I can absorb in one sitting. Thankfully Amelia is at these appointments to pick up my slack.
Radiation has brought up a lot of emotions that I did not expect. I feel uneasy, exposed, and overwhelmed. Just when I think I’ve got my emotions around cancer cataloged and organized into tidy little volumes, some brand new situation surfaces and feelings bubbles up. I simply refuse to ignore my feelings. It does no good for me, and it certainly doesn’t make anything go away. I’d rather ride out the emotions that come with the territory, there’s far more for me to learn on that path than one of of blissful ignorance.
Radiation is some serious shit. A physicist is now part of my treatment team. Beams of radiation blast my chest wall, collar bone, and lymph nodes, annihilating any rogue cancer cells that happen to be hanging around. The mission of radiation is destruction and/or interruption of fast growing cells. I will most likely have a skin reaction. It may look like a burn, but it will not technically be a burn. With burns, damage occurs from the top down through the skin layers. Heat burns more layers with each degree and eventually blisters. Radiation works differently. It damages skin from the bottom up: damaged basal cells (cells below your skin layers) move upwards to the surface of the skin and ulcerate. It is not a burn, and does not act or heal like a burn even though it looks like one. But it all sounds a little creepy if you ask me.
For the next six weeks every week day I will lay topless, hands over my head, taking deep breaths and holding them three separate times for 45 seconds while I receive radiation doses. I take a deep breath to pull my heart away from the radiation beam as much as possible. This treatment will have a whole new healing process that can take two years to recover from physically. The radiation oncologist said two to three years, but I’ll take two, thank you very much.
Amelia and I had our first real dinner date in five months last week. Bad chemo (taxotere and carbolplatin) is over, my taste buds are almost 100% back, my liver numbers are at a healthy level, and I’m no longer neutropenic. I may be bald and a little fatigued, but it was an occasion to celebrate.
We recognized one of the waitstaff. She knew I had cancer and shared with us that she had breast cancer a few years ago and was just beginning to feel normal again. We talked about holding back the urge to talk to, ask questions of, and hug other women with cancer that we see out and about, but also not knowing where these women are in their process, not wanting to intrude and assume they wanted to talk about cancer at all. It was an amazingly genuine exchange.
I keep asking myself, Why do I see cancer everywhere now? And Amelia reminds me that cancer has always been everywhere; it’s my lens that has changed. I now experience cancer through strangers and friends alike because we’re in the Cancer Club. None of us usually walk up to strangers and start talking about our cancer – unless we know that person has also dealt with cancer.
It’s not as easy as Gay-dar, which is walking into a room and usually knowing immediately who’s gay. Cancer is harder to identify unless someone is in the throes of treatment with a bald head or a donning a bag of chemo. It’s as though we are coming out to each other in whispers, I have cancer, I had cancer, my wife had cancer, I’m a survivor, I’m three years out, I’m a lifer, I’m Stage 2, I’m triple negative.
As Amelia and I were leaving, I paused near the door. I felt I needed to give our waitress a hug. I turned around, and she was standing there, waiting for me. A connection through cancer with a stranger is a powerful thing.
“It must feel great to get your last bad chemo! Congratulations!”
Three weeks ago, this was the message that kept flashing on our cell phones and repeating in our emails. Leah read them as she laid on the couch with achy muscles, bowel pain, and a mug of ginger tea. She did not feel great.
I keep waiting for the moment when everything feels better. We’ve been holding our breath since September 3, waiting for the moment that it’s “over.” I’m starting to feel just how much it’s a process, not a moment.
Yesterday was the first day I relaxed a little. These past three weeks I’ve been waiting for the bad chemo to work its way through Leah’s system – especially her immune system – so I can stop worrying that she is going to die from a stupid little germ that hitched a ride on her off a clumsy orange cart at Home Depot. I have never known what it’s like to worry like this, and to have the worry actually be based in reality. Leah’s blood work came back good yesterday, so woo hoo! She’s not going to die for hopefully another 40 years or so.
But Leah’s treatment is still so far from being over. Until November, we will drive the hour and a half to Rochester once every three weeks for her targeted chemo, Herceptin. Starting March 14 she’ll get daily radiation for six weeks at the nearby Cayuga Medical Center in Ithaca. In addition, in the next six months Leah will need at the minimum two echocardiograms, two appointments with the hair growth researcher, an annual mammogram and ultrasound at the breast clinic, a follow up with the breast surgeon, a new patient appointment with a local Ob Gyn, and a consult with a Rochester Ob Gyn surgeon named, of all things, Doctor Toy.
So yeah, we don’t feel like celebrating. With Leah feeling a bit better, the chaos and stress of life is already knocking impatiently on the door. When she was diagnosed, we had closed the lounge for good only five days earlier. The goal was to finish the renovations on the new restaurant and bakery and open in November. And March is here and we’re not there yet. Talk about stress. I can’t even begin to describe it, but good grief I am sure not exhaling anytime soon.