Get Well Soon

I have forty minutes to live. When I say live, I meant leave, to drink my coffee, and I dog willing, to write. The peripatetic pacing pup is back on her beat, back to her old tricks. Generally speaking, up to no good. What would happen if she actually stopped pacing? Would the world as we know it simply cease?

My friend Mark is just about the best friend a guy could have. He is a brilliant musician. I am fortunate to play with him in the Nightflower Orchestra. Last night we practiced, working on a Kink’s song I Go To Sleep. Ray Davies has the gift of writing perfect songs, where a subtle melody marries with his world view, all this in under three minutes. Recently, I heard a demo version by Ray himself, and the simplicity screamed at me, saying “you would be an idiot not to cover me.”

Practicing music with Mark is much more than just learning a song. We get to talk, and we talk about everything. Deep conversations that make my day feel like I am really living.

It may sound incongruent with the last statement, but last night we talked about death. Death is not as dark or dire a subject as one might think. In Canada, we have a program called MAID, which translates as Medical Assistance In Dying. Essentially government approved suicide. But medically done. No guns, ropes or razors. In my song I wrote with The Judy’s, Freedom 85, “ I told my wife take me to the vet. Put me down like your favourite pet.”

Why should pets get all the benefits? You could sleep for a million years.

MAID is a program that allows people in certain circumstances to choose how and when they die. Assisted Dying is all about going out on your own terms. Mark told me about a friend named Steve, who died this past week. Steve had called Mark, and told him this would happen. Steve would die in his own bed, with his loved ones around him. Steve had brain cancer. It had been in remission, then it came back. Hard. The end was coming. For the time he had left, he could look forward to seizures, further loss of control, plus all the pain this cancer would inflict upon him and his family. Steve decided enough is enough. He wanted to go out on his own terms.

We marveled at Steve’s bravery. Dark days are common for both Mark and I. But for his friend, his last day was not a dark day. This decision was carefully made with love. Death is a part of Life. For Steve, it was, “I think we are done here.” Whatever may come next, this journey was ending and a new one was about to begin. Or not. Depends on what or how you believe. Either way, this end was not sadness, but relief.

My friend Brent died this past summer, during my summer of cancer treatment. Brent and I were both fighting our own fights, but in Brent’s case, his cancer had grown aggressively. There was no way forward. I wasn’t aware that Brent had decided on MAID, and in the end, he died 2 days before his scheduled exit. I learned of this irony at his celebration of life.

I had spoken with him only a few weeks before. He knew there was no hope. He was at the stage where my friend Lenore had been advised to consider her “spiritual options.” All that was left in his short future was pain, more pain, and still more pain. As difficult as the decision probably was, it made itself. He had discussed this with me a couple months before he went.

Recently I had another friend of mine who was in hospital having a triple bypass. I read the comments from his friends as they wished him well.

“Get well soon”, they said.

You all know that I went through the bypass procedure, so I can assure you that anyone recovering from a triple bypass doesn’t get well soon. It takes time. Healing has its own schedule. You have to give it time, you have to honour the process. There is no “soon” in healing. It took me about three months. You would have to have a long term view to see three months as soon.

I learned more about the concept of “soon” this week. Cancer is often framed as a fight, a battle. You don’t run cancer. Cancer runs you. Cancer is a process, hopefully a very long process. I feel I have many good days ahead. Many years hopefully. Certainly not a get well soon type of thing.

I went through the treatments, and for the past two check-ins, I received the “all clear.” Cancer treatment is not easy- in any way. It is very hard, and the treatments take it out on you. All the effects of radiation and chemotherapy and weight loss are not spelled out in advance. They feed you information as you go along, so as not to overwhelm you. I maintained a super positive attitude through most of the treatment. It really got bad after the treatment ended. The after effects continue to present new challenges, which affect my health and body. These are the gifts that keep coming, hopefully for years to come in ways that I cannot predict.

Post-cancer treatment introduced me to lymphedema, which is when your neck puffs out, as the radiation affects the lymphatic system. I was given exercises to do which help with the symptoms. At first, I did them diligently- for about two weeks.

Recently I met with a speech pathologist. First thing she said was “have you been doing your exercises?” Occasionally I offered, somewhat disingenuously. The outward appearance had improved. She said doing or not doing the exercises will have eff3ct on the changes to your voice and and your continued difficulty in swallowing. The post treatment symptoms are due to the internal affects of the lymphedema. What might look like improvement on the outside may still be an issue on the inside. As my radiologist oncologist said, your throat and tongue are still swollen six months after the end of treatments. That is to be expected. It could take another six months to a year before that changes.

Radiation can also affect hearing. What? For the past month, the hearing in my left ear has been muffled. There is some kind of fluid in my Eustachian tubes. My ear can’t “pop”. Technically it is called Patulous Eustachian Tube Dysfunction, which is a disorder of the valve of the Eustachian tube that causes it to remain open. When this valve remains open, sound can travel from the nasal-sinus cavity to the ears, allowing you to hear your own voice, or even your own breathing register too loudly. Sometimes you can hear the sound of blood pumping.

I started hearing voices in my head. Lucky for me, they are my own voices.

Additionally, my feet feel funny. They feel a little puffy, numb and tingly. My radiologist said the hearing issues can be attributed to the radiation. Major weight loss (30 lbs) can also contribute. But the foot issue, which is called peripheral neuropathy, is not a side affect of radiation.a side effect of chemo.

These challenges are not things that happen, then go away. Or they are. There is no guidebook. They might go away. They might not. Most likely, they will be part of the ongoing process of life post-cancer. These after effects are part of the bargain, part of the deal of the healing process. One has to be a bit philosophical. These late effects beat the alternative. And people with the type of HPV related tongue cancer that I had, they have a very high success rate (85-95% after five years). So reason to be hopeful. Not necessarily cheerful, but hopeful. And that is ok with me.