Today's Thoughts

Friday. I had hoped for a relaxing day, but often it doesn’t work out that way. I did sleep late, though. It was my “pill” alarm that woke me this morning. I take my Ofev at 8:00, morning and evening, and when the alarm sounded, it woke me from a sound sleep. It’s become my habit lately, to rise at approximately 7:00. I guess I must have needed the extra sleep. It felt good to lay there with the dogs - Percy in Colleen’s place and Maisy at my feet. I opened my mouth and breathed deeply and slowly, listening again to the now obvious crackle in my chest. The noise is a characteristic symptom of my disease – idiopathic pulmonary fibrosis. I’m getting worse. I can feel it.

Some mornings are harder than others. It was a bit of a chore to complete my ablutions and take the dogs around the block. Oxygen helped, but still, I felt less than energetic. I felt like a tired old man. I was glad to get home again. I’d set the coffee maker before I left and the smell of coffee brewing greeted me as I re-entered the warmth of the house. The couch seemed to beckon me and, after removing coat and boots, I sat. Mindlessly, I watched an hour of television. The phone rang. It was Patricia from the hospital pharmacy calling to ask how I was doing on my medication. When I told her I’d experienced no side effects whatsoever, she was a bit surprised.

 

“You are in a small but lucky minority,” she said. “This medication is notorious. Nearly everyone suffers side effects. Diarrhea is the most common.”

Surely the road ahead will be challenging. Fortunately, it's relatively painless at the moment.

On May 11th, we're to see Dr. Shane Shapera to undergo "pre-assessment for lung transplantation."

I know he'll comment on my weight. I wish I weighed twenty pounds less.

***

Slushy Sidewalks & Thorny Mornings

The day began, as usual, with a walk round the block. It was cold and raining. The dogs pulled me along. At home later, I fed them and then hurried off to a chiropractor appointment. After my adjustment, I went back to the ground floor to an office called “Life Labs” where a technician took two vials of blood. I’m to have monthly blood tests to monitor my liver function. Liver damage is a possible side effect of Ofev, the anti-scarring drug I'm taking. I was tired by the time I got home. 

At lunchtime, Colleen phoned. She calls nearly every day from work to chat while she has her lunch. She told me about her exercise regimen this morning. 

“I only ran about three kilometres today. I don't like the treadmill. I just wasn’t into it. I was really tired.” 

I didn’t listen, really. I don’t care. I don’t want to hear about her good health and physical fitness. It only makes my situation feel worse. When she finished her story, I told her about my difficult morning, walking the dogs in the slush. Her response was predictable, I suppose.

“I’m trying hard not to be frustrated with you. This is really frustrating.”

I shook my head and decided not to share my next thought which was, “Gee Colleen. Sorry my condition frustrates you. Because I’m fine with it. I feel great. And I’m thrilled, by the way, that you can run five fucking miles every morning before work.” This was my thought. But I kept my mouth shut while she continued.

“You need to wear your oxygen as soon as you get out of bed. You need to rest more often. You always try to do too much in the morning and you overdo it. You’ve got to stop ...”

Listening, Colleen? ‘Cause that’s what I did.

I resolved then that I’d “stop” complaining to her. I’ll stop telling her about my thorny mornings. I mean the rest of my day is pretty good, actually. I don’t seem to exhaust myself the way I do in the morning. So I won’t mention mornings anymore. That way Colleen won’t get frustrated.

My health problem has introduced a lot of stress into our relationship. Colleen, it seems, is feeling it more than I do at present. I wonder how she’ll we’ll manage when things worsen.

***

The Courage at Last to Tell Them

I went alone to Mt. Forest on Tuesday. My brother often comes with me, but this time, he was busy with a leaky pipe in his basement. Perhaps it was for the best. I had decided to tell my parents about my illness. I had tried to protect them by not telling them, but I was wrong. Parents want to know when their children aren't well. They deserve to know.  

It was a hectic day. I arrived later than I’d planned and so we went directly out for lunch. I didn’t share my secret with my parents in the restaurant because I didn’t want to spoil our lunch. Mum’s Alzheimer’s was barely detectable. She seemed just like good ol’ Mum. Dad remains deaf and nearly blind, but he puts on a brave face and tries to snatch a bit of joy from each day. God bless him. Both of them. After lunch, there were errands to run and before I knew it, the afternoon was gone and they were being summoned to the dining room for supper. A local outbreak of flu prevented me from joining them. 

I went out, ate, and returned after dinner. And in their little apartment later, I told them. Simply. And without much detail.

“I’ve got a problem with my lungs, Dad. Same as you.”

“The doctor’s have me using oxygen when I exert myself.”

“There was an incident in the kitchen a couple of weeks ago. It really frightened Colleen.”

“My faith. My family. My friends. The experts at Toronto General. I’m in good hands.”

“There’s the possibility of a lung transplant.”

“Chronic. Progressive. And eventually, fatal.”

They asked a few questions.

“Do you keep a tank of oxygen in the car?”

“Do you have to pay for the oxygen?”

“How are you feeling now?”

“Do you take any pills?”

There were no tears, no there-there hugs. It was not as difficult as I’d imagined. They took it well. After all, I’m not terribly ill yet, am I? Colleen suggested I might feel as though a weight had been lifted, and I suppose I do. I’m glad I’ve told them, finally. I know they’ll think of me – Dad, especially. Each time they do, it will be a kind of prayer or a silent benediction, an invisible, powerful energy flowing across the miles from their hearts to mine. That’s what I believe. It may not help. But it can’t hurt.  

F-ather A-nd M-other I L-ove Y-ou 

Fit & Fat

The subject of exercise has occupied my thoughts lately. I really don't do much to maintain my health. Sure, I sleep reasonably well, and I try to eat healthy foods. But I lack motivation where it comes to physical activity. I walk the dogs. But really, that's about it. 

Colleen is athletic. She loves to exercise. She runs every morning before work, often covering distances of four or five miles. She says she enjoys it. And I am pleased for her. But she comes home each day and tells me proudly how far she ran, and it somehow bothers me. I listen, of course, and try to support her. It’s what she needs. Jogging makes her feel good, and it reduces her stress. But I can’t help noting a certain resentment that stirs inside me. She’s getting stronger and I’m getting weaker. 

I must find a way to exercise my muscles. It would be good for me. It would help relieve my stress. And it would show Colleen that I’m trying. She’d like to see that I’m doing all I can to stay healthy, even in the face of this creeping terror that resides in my chest. Colleen wants me to exercise. Should I join a gym? Rent a treadmill? A stationary bike? I’m to see the doctor next month. I have a strong feeling he’ll prescribe exercise. I know I should. But I don’t want to. I’ll have to find a way to overcome that. Exercise and fitness are a big part of the transplant programme, both pre and post. The hardest part is overcoming inertia. 

I've got to get started somehow. Somewhere. Someday.