Meanderings ... From Mimico

Hello friends. You know, when I first began this blog, I thought I was dying. I thought my disease would progress more quickly and that I might soon be posting from a hospital bed or invalid's home. Blogging was a way, I thought, to help me get through it, and to access the support of gentle, caring people who'd helped me through some very trying times in the past. I'm not sure what this thing is now. Should I kill it? Keep it? Change it? What will become of me? I mean honestly, guys, I feel ok. I walk to work sometimes and often walk home. That's a mile each way. I walk with Percy two or three times a day. Sometimes, he invites me to run and I do for a block or so. Colleen and I marched all over northern France and Belgium and Holland last month, uphill and down. That was the trip of a Lifetime, or at least it was planned with that possibility in mind. And I felt fine. No, I couldn't always keep up with Colleen. She's younger than I am, and in far better shape. She's lost over a hundred pounds after her gastric bypass surgery. She actually lost two pounds in Europe. I gained six. Yeah, I know. French food is amazing. And the wine ...!

 

For a guy who's been diagnosed with a fatal lung disease, I feel pretty damned good. I have an appointment on December 19th to attend Toronto General Hospital for another pulmonary function test. The last one I took showed an improvement over the first one. Remember that? Maybe I'll do better again this time. The doctor suggested I lose twenty pounds. He'll likely change that to thirty pounds this time. I wish I could take some weight off and give it to Colleen. We'd both look better, I think.

 

Anyways, that's about all I can tell you for now. Reiki once a month. I think it helps. My chest still feels tight sometimes and it still hurts a bit at night when I lie on my side. But other than that, I'm fine. Those horrible days and sleepless nights of last winter seem well behind me now. I am a worrier by nature, but I'll try not to dwell too much on my own situation. Lord knows, my parents provide enough fodder for worry. Meagan too.

 

Thanks so much, everyone, for caring enough to read my thoughts. It means more to me than you might think.

 

...

Still Here. Still Breathing.

Well it's been a while, hasn't it? Two months. I haven't much to tell you, really. Our plans for France in October are nearly complete. We're really looking forward to that trip. It'll be quite an adventure, I'm sure. There's not been much change in my lungs. They feel about the same, I suppose, as they did a few months ago. "The disease progresses quite slowly sometimes," said the doctor. The day-to-day changes are imperceptible. I continue to take great, deep breaths often in hopes of stretching my lungs, and countering the scarring. I don't know if it works. I doubt it, but I feel I have to try. It hurts still when I lie on my side at night, although not bad. And sometimes when I walk, I feel a bit of a sharp pain behind my sternum with each footfall. Is it the disease? Is it stress? Do I even have the bloody disease?

I don't know what else to tell you, friends. I know you're all familiar with my muse, Ms J. So I've included a couple of recent ramblings.

August 5, 2014

Tuesday. My neck and shoulder are bothering me. Tight muscles. It hurts to turn my head. I’ve been wondering when I might expect to feel the effects of my worry about my lungs and my parents. I see the chiropractor bi-weekly, but I may have to increase the frequency of my visits. My next appointment is on August 11^th. Maybe I’ll call and see if I can go earlier.

August 6, 2014 

Wednesday. Colleen was up at 4:45 this morning. She ran (jogged) for an hour, then had a shower, made her lunch, walked Percy and then went off to work. I do not know how she has so much energy. It would be great if she could clean the house.

I went to visit the chiropractor this afternoon. The treatment helped, I think. I’ll have another on Monday morning. The chiropractor is helpful, but I’ve grown to dislike the trip there on public transit. I’m not comfortable around others. Strangers. Foreigners. I live in Canada’s (or perhaps the world’s) most ethically diverse city. You’d think I’d be used to it. But I’m not. I hate it. I hate sharing space on a bus or streetcar. I don’t like foreigners with their odd smells, strange attire and incomprehensible language. It’s stressful for me. And the older I get, the more anxious I feel. I don’t like people.

The World English Dictionary says xenophobia is the fear of strangers - hatred or fear of foreigners or strangers or of their politics or culture. Maybe that’s it. Maybe I’m xenophobic. On the bus, (or in public anywhere) I try to sit or stand away from other people. But it seems there’s always someone who will stand or plonk themselves down right next to me. Why must they be so close to me? Why can’t they choose another seat? No matter how empty the bus is, someone will sit next to me with a cell phone and blather on in their gobbledygook language about God knows what. I want to tell them to fuck off and find somewhere else to sit. Cell phones ringing. Earphones buzzing. Bumptious teens. Sweaty men. Stinky old people. I am so tense I can hardly stand it. Colleen says I should ignore them. Just listen to your music, she says. I try and it does help. But I don't always remember my iPod.

This city has too many people, Ms J. And waaayyyy too many foreigners. Tolerance becomes harder and harder to practice. Have I mentioned I don’t like people? I guess I’m stuck here for a few more years, though. Especially if my lungs get worse. Stupid city. Stupid lungs.

***

Drifting on a Tide of Uncertainty

I feel lost lately. I feel as though I’m going nowhere. My Life is stagnant. My family is drifting apart. Ivy often stays late after school to participate in extra-curricular activities. Colleen is gone to work all day, wasting gasoline and earning a pittance. Our savings are not growing, nor have they grown since Colleen quit her job late last year. We rarely eat dinner together as a family anymore. Fourteen-year-old Ivy is becoming more and more reclusive and selfish. My own kids live far away and I rarely see them.

I don’t know. I just ... Well, I don’t even know what I feel anymore. I’m worried about Mum and Dad. I want to be with them, but I want to be home. I enjoy my time with them, but I begrudge my time with them. I want to be with Colleen and Ivy, but I was glad when they left me alone here this morning. I want to visit France this fall, but I hate spending all that money to do it. I’ve applied for a management job with the company that assumed the contract for the GO trains. Bombardier is the company that took our jobs in 2008 when CN (my former employer) walked away from a long-held contract. If I can get a job there, I’ll retire from VIA and claim a double income. Do I really want to be a manager? I’ve hated management all my Life. And I’ve resented Bombardier for taking our jobs. And let’s not forget about my lungs. Am I sick? Am I not sick? What the hell is happening? Or not happening. I’ve spent the morning watching sad movies and crying. I wish I could go to work today. I feel like I have a purpose there. What I do there is important. At work, I feel as though I’m making a difference in the world, or at least in the Lives of a few people.

What am I doing here? Waiting for Dad to die? For Mum to get worse? For my health to fail? What’s the point of any of it? I've been dealing with these feelings for a week. I can't seem to shake it off. Colleen says I'm in a rut. Am I in a rut? Depressed? Self-indulgent? Maybe I need a new leash on Life. 

 

C'mon, Percy. Let's go for a walk.

 

***

Authentic Healing or New Age Bunk? If It Works, Who Cares?

Last Thursday, Colleen went to an appointment elsewhere while I went to the church to attend my Healing Circle.  

With Paul and Colleen both absent, only Charlotte and Nina were there to practice their Reiki on me. Charlotte’s hands felt very hot as she placed them on my chest. Nina used a small metallic weight on a chain to measure my Chakras. She said my heart was very open. As I began to relax on the table, Nina invited me to share the thoughts and images that came to me. I tried hard at first, and there was nothing. But as I allowed my mind to rest, the image of Ivy was there. She was dancing, on a blade of grass! She was smiling and filled with the joyful exuberance of a young girl. Her long hair floated freely and gently around her face as she swayed and spun on the grass. The sun shone brightly. The wind bent the grass, but Ivy raised her arms and danced on. She laughed and I felt her joy. Giggles – little girl giggles – bubbled from inside me. I grinned broadly and tried to suppress the energy that wanted to escape. I felt so happy! I couldn’t stop smiling. I must have grinned through the entire session and when it was over, (the time flew past!) Nina asked me how I felt.

 “Good,” I said. “I feel calm. I feel encouraged and hopeful. I feel happy!”

 

As I rolled off the table, I realised my ears were full of happy tears. I lack words to adequately describe my love for Ivy. I was still smiling. And I smiled all the way home. Maybe I’ll be fine. Maybe I’ll live till I’m 80. Maybe this disease will progress very slowly. Or not at all. But if I do get sick, if things get bad, I know that the Love and compassion of Charlotte and Nina, and the Spiritual power channeled through them will help me face my adversities with courage and with hope.

 

And I have a wife and three children who love me. God is good, my friends. I am truly blessed!       

Happy News

I'm so glad we decided to find a new doctor. What a difference! The first guy simply looked at my CT scans and pronounced his diagnosis of IPF. He handed me a little glossy pamphlet explaining the disease. "Here," he said. "Read this. I'll see you in six months. NEXT PATIENT!"

The treatment I received at TGH was incomparably better. The appointment was scheduled for 11:00, and at precisely 11:00, my name was called. A pretty technician led me toward the pulmonary lab where I underwent a series of breathing tests like the ones I did in December. Collectively, it's called a pulmonary function test, or PFT. I huffed and puffed into a machine that measured the strength and volume of my lungs. Next, she did an ambulatory oxygen assessment, which measured and recorded the efficiency of my lungs, and how well they worked to provide oxygen to my blood. In this test, I was wired to sensors on my wrist and forehead, and asked to walk briskly for exactly six minutes.

Then it was lunch time.

"Can you come back at 1:00?" the receptionist asked. "A resident will see you first, and then the doctor."

After lunch, we were led to an examination room where we met an honest young fellow with Buddy Holly glasses and a white lab coat.

"I'm not actually your doctor," he explained. "I guess you could call me a trainee. I'll ask a lot of questions and then I'll examine you. Dr. Moric will see you when I'm done. OK?"

And boy, did he ask a lot of questions!

Timeline.
Symptoms.
Drug allergies.
Age.
Health history.
Occupation.

He recorded everything diligently on hospital forms. Then he examined me and asked more questions. Thorough, I think, best describes the procedure. When he was done, he said, "Wait here. I'll go find the doctor." And he left us.

Friends, I'll have to backtrack a little to provide more information.

When we first arrived in the waiting room on the 10th floor - Pulmonary Clinic, we were chatting and leafing through magazines when a strikingly handsome man approached us from the hallway. He turned and disappeared into an office before he reached us.

"Check that guy out, Hon'," I said to Colleen. "Did you see the arms on him?"

Colleen had not failed to notice his dark wavy hair, and bulging biceps.

"Yes," she said. "He's really good-looking."

Well guess what? That guy turned out to be my doctor. It was he who returned to the exam room with Buddy Holly. He didn't look like a doctor. He looked like a movie star. He wore dark slacks and a light Polo shirt. The short sleeves were stretched to their limit to contain his arms. His eyes were brown and soft. His smile was kind. His teeth, straight and white. He stuck his hand out and introduced himself.

"Hi Dale. It's nice to meet you. I'm Jako. Jako Moric."

He pronounced the J like a Y. Yako. Just Yako, not Doctor Moric. I felt instantly comfortable.

He sat and talked with us for about a half hour, answering questions in layman's terms. He was eloquent, intelligent, but a regular mensch like you or me. I asked about my diagnosis.

"OK," he said, "Let's talk about IPF." And he leaned back in his chair and smiled warmly.

He was unwilling to accept a diagnosis of IPF. However, he explained that he was also unwilling to rule it out. A clinical diagnosis of IPF is difficult to trust. A lung biopsy is the only way to be certain.

"Your CT scans definitely show scarring. But your lung function is still quite good. As a matter of fact, you did better on your walking test this time than the first time. Did you have a sore foot or something the first time?"

I told him the test had been administered differently. The first time I did it, the technician told me to walk at a normal pace. This time, I was asked to walk more quickly.

"Well that would explain it," said Jako. (I think of him as Jako, not Dr. Moric.) 
"You actually scored in the 109th percentile for men of your age and weight. You're in pretty good shape. But I would like to see you lose twenty pounds before our next visit."

I began to feel a bit confused. Did I have IPF or not? Am I fine? Will I live 'til I'm 80?

"Your lungs are scarred, Dale. That's a fact. We'll do some blood work to rule out other disorders. But we simply do not have enough information yet to render a firm diagnosis. Your symptoms are mild. You still have a good Life. I hope you're not disappointed, but you're just not sick enough yet to treat."

I asked about next steps.

"Go home. Live your Life. We'll keep your test results and see you again in six months. We'll do another lung function test and another walking test. If things have changed, we'll take another CT scan. And of course, if you notice a change, come and see us right away."

"So .... I'm still ... just ..."

Jako sensed my confusion and leaned forward in his chair. His eyes held great compassion.

"Look. There's something wrong with your lungs. The scars will never go away. It'll never get better. But it might take months, even years before it gets any worse. All we can do is wait and see."

I am relieved. Yes I am. But it still feels rather like sitting under the Sword of Damocles. I still feel unsettled. I've been worried since December. I suppose a burden of that size can't be put down all at once.  I replay his words now and find comfort there.

"Go home. Live your Life.  It might take ... years before it gets any worse."

I suppose that's the best I can hope for, realistically. Meanwhile, carpe diem.

We're going to France in October.


***

Today's the Day

Hello friends,

Colleen has gone to drive Ivy to school. When she returns, we'll be heading downtown to the Toronto General Hospital. 10th Floor. Pulmonary Clinic. 11:00 This is my first appointment with my new doctor.

I'm feeling emotional this morning.  Frightened.

Remember that expression about today being "the first day of the rest of your Life"?

Well, today feels like that day.

I know you'll be thinking of me. And that means a lot.

***

Busy Week

Meagan is on her way to Kincardine by bus to see her brother today. Dan and Meagan haven’t seen each other for more than two years. The meeting will surprise Dan. His girlfriend, Ashley has planned it, and even paid for Meagan’s bus ticket. I’m thrilled that they will finally get together. I’m sure they’ll discuss me, but they will not talk about my illness. They don’t know of it yet. I dread telling them. I don’t know how to tell them without worrying them, without hurting them. I’ve told them of the challenges facing my parents. They seem to accept that without fear or sadness. Grandma and Grandpa are old. Old people get sick and die. It’s normal. But I’m not old. I’m their father. I guess I’ll let them have their fun in Kincardine this week. On Friday, I go to the hospital to have a lung function test. I’ll know more then about the progression of the disease. Maybe I'll have good news to tell them. Maybe.

This afternoon, Ivy is excused from school. The three of us are going downtown to see our eye doctor. We go every year. Colleen insists and so we do it. We'll have dinner after and then come home amid the frantic rush of suburban commuters. Not looking forward to that.

You know, I’ve always looked forward to a visit with my parents. For more than twenty years, I’ve gone happily to Mt. Forest to see them. But quite honestly, I don’t look forward to it anymore. It’s very hard to see my parents so needy and infirm. I plan to spend Tuesday, Wednesday and Thursday with them. I’ll continue to visit, of course, for as long as they need my help. It’s only right that I should give back something to the ones who’ve given me so much.

 

Thursday afternoon, I'll meet with my Healing Circle for another Reiki treatment. And on Friday, I'll go downtown again to Toronto General Hospital. 10th floor. Pulmonary Clinic.

 

And so it begins. Wish me luck.

 

***