How are you feeling?
As I approach my 61st birthday this week, I am feeling like I am playing a waiting game. My surgery is done. My body is healing. Last week, I did my first gentle yoga class. It felt so good to be on the mat and connecting with my body in a way other than recognizing my pain levels from recovery. I still have pain, but I’ve gone from a level 7 post-surgery to a level 2-3. That’s progress. That’s manageable. Next week, I start a new regimen: I start a year of immunotherapy. Every 3 weeks, I will be tethered to an IV that provides immune-boosting medicines to help fight off any sleeping cancer cells in my system. So I am giving a year of my life to treatment to stave off cancer. How do I feel about that?
When I think about being tied to treatment for a year, I feel frustrated and angry. I feel scared. Since retirement, I don’t tie myself to anything for a year. Sure, I lead meditation once a week. But if I want to go away, I just get someone to sub for me. With this treatment, no one can sub for me. If I don’t accept the treatment, I have a 50% chance of the melanoma recurring. Those are pretty high stakes. A course of immunotherapy should lower my risk to 25-30%. I’ve been offered a trial drug. This drug is on its 3rd trial phase, so it’s soon-to-be-approved by the FDA. That said, I’m in a trial, so I may just get the approved immunotherapy medication. It’s a double blind trail; my doctor and I will have no idea. I may never find out if I received the trial drug, even 5 years out.
Anyway, regardless of the medication, I am tethered to being treated for the year. And does that guarantee my health? No. But neither does living, actually. By nature of being born, I am of the nature to die. I could get hit by a bus, develop some other illness, get in a car accident, die in a plane crash, or any number of life-ending things could happen to me. But those incidents seem to be ones that will catch me by surprise. Knowing I have cancer and that it could be terminal, that inevitability is harder for me to swallow.
I’m wondering what my year will be like. Suddenly, I don’t feel comfortable leaving the country. While that didn’t matter for years, now it matters. I might not have left the country in the next year, but just knowing I can’t (self imposed I can’t), I feel trapped. I’m worrying how I am going to handle the winter knowing I can’t leave the country, and I may be tired all the time. How depressed will I get? Will I need a mood-elevating medication? So what? Can I just appreciate every day for being every day? There are roses blooming in my garden and beautiful sunsets every evening to the west. Yet I am scared and worried. I don’t want to throw my fear away or discount it. I want to accept it and hold it like a small child.
I am wondering where this melanoma came from. My surgeon said that I either had a melanin (skin) cell that was floating around at development and it landed in my lung and then 60 years later became cancer, or I developed a melanoma on my skin that was absorbed and then got lodged in my lung. My oncologist thinks it’s the latter. Really? How long was it floating around in my body? Could it have been sleeping? Was it from when I was 5 years old and my family went to the Caribbean? Could it be from when I was a teenager trying to get a tan? Could it be from when I spent 6 weeks in Bali? Why must I find a culprit? I notice I’m always looking for cause and effect with my body. An “if only” to lay blame on. I’m in the here and now. At this point, the past makes no difference. I must live and care for who I am now. I must learn to continually be applying sunscreen.
I am thinking that the things that mattered to me before surgery don’t matter quite as much now. I was in the supermarket buying raspberries. They were $6 for 18 ounces. Initially, I thought, “That’s crazy. Who pays $6 for 18 ounces of raspberries?” Then I thought, “I love raspberries. Why am I denying them for myself? This cost will not put me into bankruptcy. If I’m not going to enjoy them now, when do I get to enjoy them?” I was going to hold on to a sagging 29-year-old couch and a file cabinet that’s falling apart. I was going to wait to replace my stained carpeting with flooring; wait until I hit the 10-year mark of living in the house I’m currently in. Why? Can’t I enjoy my space now?
I’m hit with thoughts of my mom saying, “Waste not, want not”, and a desire to not use things to elevate my mood. But really, I don’t know if I’m finding joy or escaping my sadness.
I’m sitting in confusion wondering what this new part of my life is bringing me. I’m having challenging conversations with people now where I’m putting my needs first. I’m setting new boundaries. Having “no regrets” is becoming more and more important. I’ve spent the last 6 years in an amazing retirement having fantastic experiences. What will I have this next year? Does it need to be made up of superlatives to be a valuable time? Can I just learn to live and accept my body as it changes? The faucet of my brain does not have an off switch and often my thoughts overwhelm me. Yet my body pushes forward. Off we go to start a year of immunotherapy. Every treatment will bring me closer to the end and a return to normal. Or perhaps the return to a new normal.