Sometimes having cancer- and surviving cancer- makes you feel very small. The sea is just so big, and you have only so much control over your little boat. I’m at the BC Cancer Agency today for two appointments.
About 2 1/2 years ago, I was diagnosed with a solitary plasmacytoma. That’s a blood plasma cancer, which revealed itself in the form of a tumour growing inside my upper arm. Essentially, the tumour sat there, eating away at the bone from the inside until all that was left was a fragile eggshell, trying hold itself together.
It fractured of course. Several times. The first time was while placing a coffee mug on a shelf. Another time, when I hopped down from a large step. Another in the car, going over a bump in the road. Little micro fractures. After radiation failed to shrink the tumour, I had surgery to remove the top 11 cm of my humerus and replace it with titanium. I have my arm, the use of everything below the elbow, and I am cancer-free. But pain and the limited use of my shoulder remain. There just wasn’t a lot left to make a solid functioning shoulder joint, so it doesn’t sit in there right. I can shake your hand, but I’ll hold my right arm out with my left. Just don’t shake it too hard, okay?
I have a 50% shot of this being a full cancer cure. And that’s what I hope for. The other 50% is another instance of blood plasma cancer, which would then be diagnosed as multiple myeloma. If my body goes down this road, I should expect the cancer to start continually popping up in different places. My understanding is that there is no cure, but there are enough available treatments to play “Whac-A-Mole” with each manifestation of cancer, for quite a number of years. It’s not something I like to think about.
So today, I have back-to-back appointments at the Cancer Agency- one for the body, and the other for the spirit. The first is with Dr. M, at the Pain and Symptom Management clinic.
While I’m waiting for Dr. M in the exam room, I can hear click-click-clicking down the hall, and I know my oncologist is out there somewhere. She always wears funky high heels or boots- a bit of individuality in a sea of uniforms, lab coats, and sensible footwear. She is the one who reviews my lab work and conducts physical exams every three months. I’ll be seeing her next month to make sure I am still cancer-free.
Dr. M doesn’t wear fancy shoes, but he does have the kindest bedside manner, which helps when he needs to be frank, as he was in my last appointment. “I don’t know if anyone has told you this,” he said. “There are things we can do to help, but it’s never going to be 100% – at some point, you and your shoulder are going to need to learn how to live together.”
While I wait today, I look around the room, trying to figure out the purpose of all the medical equipment. Dr. M arrives wearing a smile, asks me how I’m doing and did I start using a TENS machine? (A TENS sends electric current through a sore area on the body, with idea that raises the pain threshold.)
Shit! That was my assignment from the last visit. I’m embarrassed. I completely forgot. Even more embarrassed because, up until last Saturday, the pain was really awful and perhaps using a TENS would have helped. How could I forget? But the reality is that as I was leaving the last appointment, all I could think about was methadone. Methadone as a possible treatment. Methadone. Methadone? Really?
Today, I make a note in my phone so I wont forget the TENS machine again. We talk again about methadone and I tell him I want to use that as a last resort. He smiles and says, “Oh, no, that- by far– is not the last resort.” But he assures me that is not a “pill-pusher,” and I am glad to hear him say it.
Dr. M tells me that after while- and we are talking years- the nervous system will slowly adapt. The pain will not go away, but I should expect “reduced intensity” after the body learns that sending a pain signal from my shoulder area doesn’t do any good. We end the appointment without any new prescriptions and a promise that I will get a TENS as soon as possible.
The second appointment is with J, my counsellor. I go up two flights of stairs, which remind me of those Escher drawings. I’m sure that’s not the intended impression, but it is rather fitting, I think, for a building dedicated to treating cancer.
The cancer library is on this floor, along with Patient and Family Counselling. There is no medical equipment here. It’s cosy and carpeted, with sculpture and paintings, soft lighting and comfy chairs. Like Dr. M, my counsellor smiles and asks me how I’m doing. I tell her things have been really good since Saturday and today is a particularly good day. Before that, pretty awful. Today, though I feel like I have my brain, I have energy, and the pain is less. It’s a very good day.
Its hard to describe how these things all interact. It’s like Pain steers my ship, and, riding along with him, are his good buddies: Mood, Focus, and Energy. Sometimes one of the others will take a turn at the ships’s wheel, but they are always together. Hmm… Actually, this really isn’t the best description because it doesn’t deal with the ups and downs. What is that like?
I guess it goes back to that thing about a being in a boat on the ocean. A very small boat and a very big ocean.
Today, my boat is floating atop a giant swell and I can see everything, the horizon a clear line in all directions. And from way up here, I can also see into the bottom of numerous swells- troughs, big valleys in the water. And of course, for every valley, there are an infinite number of peaks. Some may not be as high as the one I’m on today, but they’re out there. So many peaks and valleys, for as far as I can see. Sitting up high, like I am today, I know I’ll go up and down many of them. I like being up here. It’s so bright, with lots of air and sun.
But, in times like last week, I’m in the bottom of a swell. So low, that everywhere I look is a cold wall of water. There is no horizon. There is no sense of the other valleys, and the only peaks I can see are the ones towering above me, grey walls of water teetering on collapse. I can’t even see the sun. In these times, I think: what if this is it, what if this is all there is? The new normal. It’s scary. I can’t see anything but water and a small patch of sky above me.
So today, on a good day, I think to myself that I need to write all this down because I want to remember. That’s going to be the trick when I’m sitting in the bottom of a swell. If I can just remember, just trust that my little boat will once again be heaved up into the world of light and air… Yes, remembering will be the trick.
Today, instead of leaving and thinking about methadone, I walk out of the Cancer Agency thinking, “A boat on the ocean, a boat on the ocean…”