I've said it before, but ...

My chest hurts today.
Maybe it's stress.
Maybe it's what 57 feels like.
I dunno.
My lungs are fine and I feel grateful with each smooth breath.
But the soreness in my chest seems a harbinger of something yet to come.
Something evil.

Fraidy Cat

We have these travel plans - Costa Rica in November, Las Vegas in January, and California and Mexico in February.
 

And I plan to retire in March.
 
I'm afraid though that it'll be too late, that my lungs will have worsened to the point where these trips will be difficult. Or impossible.
 
I'm ok now. I'm fine. But this is my fear.
 
I know. I worry too much. 
 
I'm a fraidy cat.

A New Car?

We’ve been looking at new cars. I want a car. Colleen wants an SUV. I’m not an SUV guy. I’m a car guy. I’d like a new Ford Fusion, but they’re a bit beyond our price range. We looked at a Mazda 3 and I quite like it. Colleen, of course, prefers the Mazda CX-5, an SUV. In case you don’t know what an SUV is, I’ll tell you. It’s a Sport Utility Vehicle, not quite a car, and not really a van. It’s kind of halfway between. SUV’s are really popular with wealthy people and people with young kids. I don’t like them. They lack style. I think they look like metal boxes with wheels.

“Don’t think about now,” says my very practical wife. “Think about the future, when you’re not as fit as you are now. Think about when your lungs are bad and it’s hard for you to get around. Isn’t an SUV easier to get in and out of?”

She’s right. I hate it, but she’s right. An SUV is much easier to get in and out of. You sit in a more natural position. There’s more room, room even for an oxygen bottle. A goddamn oxygen bottle.

“And when Ivy and Percy come with us on a long drive, it’ll be better for everyone.”

Yeah. A new car was a dream of mine. A new, sleek, cool car was something I wanted. But I guess that dream will die too. Screw it, then. I guess we’ll be getting an SUV. The Mazda model costs $45,000. We’ll keep looking.

***

Big Plans For An Uncertain Future

We had a nice chat the other day, Colleen and I. She has spoken often lately about her desire to own this house.  Or any house, really. It’s just that we live here already. She thinks we should discuss it with her parents.

“We should talk to my dad about buying this house. We should have discussed it when you first sold your house and moved in here seven years ago. We've paid him about $70,000 in rent since then. Maybe we can apply that to a down payment. And we can offer him the money you got when you sold your house. Maybe we can buy this place from my dad for $400,000. That's what it was worth when you first moved in here with me and Ivy.”

I listened to her ideas. She said she wanted to have a place of her own – “roots” she called it – for herself and Ivy after I’m gone. But Mimico has become a popular place to live. Homes here are very expensive. This old house is worth nearly a million dollars in today’s market. I knew her parents would never agree to Colleen’s plan. The Truth is, we cannot afford to buy a house here in Mimico.

Owning property was important to Colleen. I understood this and tried to be supportive. But in my heart I know that she and Ivy will be welcome, even encouraged to live here for as long as her mum and dad are alive. My in-laws are wealthy people. They own three properties. When they’re dead, Colleen’s share of their estate will be more than a million dollars. At that point, she can buy a house wherever she wants. She was persistent, though, in her desire to “at least talk to them and ask.” I knew her idea was destined to fail, but I offered no opposition. I’m content to stay in this crappy house until I’m dead. It’s close to the hospital and it’s close to my in-laws. It will be fine until I don’t need it anymore. And that might only be four or five years. Maybe less.

I have a nest egg of about $150,000. We had planned to use it for a down payment on a home of our own one day, after I retire and Ivy and Colleen finish school. We had talked about the possibility of moving to Windsor where our money would buy us a lovely home. But then I received this IPF diagnosis. It wouldn’t make sense now to leave Toronto and move 200 miles from one of the world’s leading pulmonary/transplant facilities. So that dream is dead and Colleen has changed her mind now about buying this place. She doesn’t care anymore about owning her own home.

“Let’s travel,” she says. “Let’s do all we can while you’re still able."

I watched as a silver tear slid down her cheek.

"What’s the point of having money in the bank," she said, "if you’re not here to enjoy it with me?”

We’re buying a new car this month. In November, we’re flying to Costa Rica. January will find us at Las Vegas and the Grand Canyon. In February, we plan to visit Cabo San Lucas at the tip of Mexico's Baja Peninsula. And I’m retiring in the spring. I still feel alright, mostly. Who knows? Maybe we'll visit Wales and Scotland next summer.

You can't take it with you, can you? 

***    

Chest Pain

My chest hurts. I told my GP about it and he listened to my heart.

"Your heart's fine," he said. "Chest pain can be caused by stress. Are you feeling stressed?"

Noooooo. I feel great. Everything's fine.

My chest hurts. Not bad and not constantly. Just sometimes. A kind of dull ache as though my sternum were bruised or something.

Something is going on inside my chest. When will it become more evident? And what will it look like then?

*** 

Slow But Steady

Hello friends. I hope you're all keeping well. It's been a long time since I last posted here. Sorry, but I really haven't had much to tell you. Well, that's not entirely true, I suppose. There's been lots going on - LOTS! - but not much that pertains to my lung disease. I began this blog to share my IPF journey with you. I can share other happenings with you too, though, if you'd like. God, I miss our days of blogging, don't you? A few of you still blog. Some stopped for a while and have taken it up again. Remember the Glory Days? In some ways, it seems like centuries ago. At other times, it feels like yesterday. Have we known each other for ten years? Odd innit?

At the end of July, we saw our lung specialist at Toronto General Hospital. Dr. Lau was his name. He’s young and easy to talk to, but his muscles aren't quite as impressive as the first guy we met there. He’s a research scientist as well, and very knowledgeable. He told us that my most recent CT scan, done a few weeks ago, indicates a progression of the fibrosis on my lungs. (The first CT scan was done a year ago) He said it appears to be advancing quite slowly .. and that’s good. But he also confirmed that the scarring shows a “honeycomb” pattern consistent with the dreaded IPF (idiopathic pulmonary fibrosis) diagnosis ... and that’s bad. Other types of fibrotic lung disease, apparently, have more treatment options and better prognosis. The only sure way to determine if it’s IPF, is with a biopsy. We’re still undecided about that. Yes, it would confirm or rule out IPF. But how would that change anything? I’d still have scarring on my lungs. It’s still getting worse. My future is still completely unpredictable. Six months? Three years?

 

The doctor said a few things that have stuck with me:

 

“Put your affairs in order.”  Yeah, that’s the one that keeps echoing around in my mind.

“Make sure your family knows your wishes, in case you end up on a ventilator and can’t speak.”  That one has played itself over a few times as well.

“Some patients can go for a few years the way you are – but eventually ...”

 

“Come back and see us in six months. We’ll do another pulmonary function test and re-assess. We can also arrange for you to meet the lung transplant team. It’s too early, really, but they should get to know you, get you on their radar.”

 

“We can talk about starting you on the Esbriet programme. But I have to warn you. You won’t feel better. You’ll feel worse. Esbriet has been shown to slow the progression of the fibrosis, but side effects are nausea, vomiting, diarrhea; rashes from skin sensitivity to sunlight, and fatigue. Nine pills a day in three doses.”

 

But I feel fine, my friends. I do. I haven’t experienced any serious shortness of breath and I don’t cough very much at all. However, I understand that as the disease progresses, coughing and shortness of breath will be my constant companions. Portable oxygen is definitely in my future. We have a friend who has this condition. Frank lives in North Bay and has been a great support. He had a single lung transplant last Christmas. Unfortunately, his body is rejecting the new lung. He’s fine at the moment, but it’s a constant battle waged with drugs and hospital visits. It's a battle he cannot win.

 

I spoke with my friend Bob recently. I’ve been wanting to share my story with him, but I felt he had enough on his plate already. Bob has Stage 4 bone cancer. There's no Stage 5. I did tell him, though, last week. I’m glad I did. He was very supportive.

I have not told Mum and Dad.

It’s my hope that they NEVER know about it. I may have to tell them one day, I know, when the symptoms become too obvious. But right now, it's enough of a struggle for my parents to deal with Dad's physical infirmities and Mum's steadily advancing Alzheimer's. They don't need more worries. So far, I've told very few people about my diagnosis. My siblings all know. And my mate at work, Jimmy. He's the other engineer on my train. We've worked together for nearly seven years. I don't want everyone to know about my situation. It sounds odd, but I feel sort of special because of it. If I told the whole world about it, I wouldn't feel special anymore. Does that make any sense?

 

We took our dog, Percy for a haircut last Friday. While we waited, we had lunch together at The Canadiana Restaurant here in Mimico. We talked about our future, or whatever might be left of it. And we decided we should plan a trip away to celebrate our fifth anniversary. We've got some money in the bank and we might as well enjoy it. We’re going to Costa Rica in November. Colleen will make the arrangements. I’m hoping we can do it for $5000 or so. Later, we saw a movie. At 42, Colleen looks younger than her age. At 57, I look older. I cheated and bought a senior’s ticket at the theatre. It bugs me a little to imagine that some people see us not as husband and wife, but as father and daughter. I think the waitress at The Canadiana did. I am blessed to have such a pretty, young wife. She will care for me when I need it most. Hell, she cares for me now.

 

We drove to Burlington today to have lunch with Bob and his wife Darlene. They took us to Tucker’s Marketplace where we enjoyed nearly three hours of dining and conversation. We talked about my lung disease and about Bob’s cancer. He’s much further along the journey than I am. My friend has had cancer for about six years. He’s had chemotherapy once and numerous radiation treatments. He takes handfuls of pills, and morphine to control his pain. The cancer is in all his bones. Walking is painful for Bob. He takes very small steps and uses a cane.

 

We discussed my retirement plans and I asked them their views. Darlene said she reckoned she would work until it became difficult to do so. Bob wasn’t so certain, and didn’t offer much of an opinion. My brother Pat and his wife wonder why I’m still working if I can get a full pension. Colleen says I should work as long as I can. Jimmy, my mate at work, wants me to stay with him until he retires at the end of next year. I don’t know what to do. I know I’m tired of working. And I know I don’t want to work until I’m too sick to enjoy my retirement. So I keep plodding along. Maybe I’ll wait til after my next TGH appointment in February. I’ll know then whether my lungs are still getting worse and how fast it’s happening. I hope it’s not too late, though. I still have quite a few items on my Bucket List.

 

I sent a note yesterday to my siblings with a link to a video explaining the disease, and offering a glimpse into my future. So far, my ultra-religious sister Helen is the only one who’s replied. She could have said “Sorry you’ve been given this ticket to Hell.” But she didn’t. Instead, she sent a sermon:

 

I think about you often Dale !  I believe that God has allowed you to have this IPF, and he will use you if you let him. He has promised never to leave us and never to forsake us, so he will see you through this.  Our home is not here Dale if you believe that Jesus did what he came to do. Our home is a much better place where there is no pain, no suffering and no tears. Jesus told the thief on the cross that he would be in PARADISE with him that day. If God made such a beautiful world for us to live here temporarily, I can only imagine how wonderful heaven will be. It says in the Bible all of this is just stuff & will one day all rot away. We are to put our heart in treasures above where moths and rust are not.

 

Everyone will die... Death is the great equalizer of everyone. If we believe that Jesus died for us, our Father in heaven knows our hearts and when we die, takes us home. If we do not believe... that is the only unforgivable sin... And we will be eternally separated from our Father in Heaven which is the definition of death.
Born once, die twice... Born twice, die once. When you accept Jesus as your Lord, you become born again therefore you will never die.

 

I pray for you often Dale, that this will bring you closer to God. HE has a still small voice. When He talks to you...listen. This IPF is for His glory. He will use you to spread His word of his love...that is our purpose here. I love you so much Dale... But God loves you more !!!

 

It'll be okay Dale... Jesus had to suffer for us to have a place with him forever. He never said it would be without trials for us here but he left the Holy Spirit 4 us when he ascended into heaven. The instant you believe the Holy Spirit enters into you. That's how he will never leave us and never forsake us until that day that he takes us home.

All that to say, I feel for you Dale and not to minimize the pain and grief that you may have to face as well as  the rest of your family in the future but keep your eyes on the Lord and it will be OK.

Love Helen

“God has allowed you to have this IPF ... This IPF is for His glory,” she says.

I am a Christian man. I believe in God. I do. But I just cannot see, for the Life of me, how my slow death by suffocation can possibly offer anybody any glory. Thanks for your prayers, Helen. But unfortunately, your sermon did not provide me even a scintilla of hope. I try to live Life one day at a time and be grateful. Because some days, Hope is damned hard to find.

***      

 

 

 

 

Christmas: Good Bye and Good Riddance

This is the day of our dear Saviour’s birth. I’m not sure I can blindly accept that as fact anymore, but that’s a discussion for another day. 

We were up at 7:00 this morning. I took Percy for a walk while Colleen made breakfast. After breakfast, we opened our few pretty boxes. The girls had put them beneath the little fake tree we have in the living room. There really wasn’t much to speak of, but Ivy seemed happy with her gifts. I got off easily. I’m proud to tell you I didn’t wrap a single thing this year. Colleen went to work at noon today for twelve hours. I’ll go to work at 5:00. Ivy plans to see a movie later with Nana and Papa. 

We Colleen managed to spend over $2000 on Christmas. Much went to kids and grandkids. Much went on the Visa card. Despite the best laid plans, we haven’t gotten Ivy’s new bedroom furniture yet. That’ll be another $2000. We’ll spend the better part of $5000 without improving the world one iota. Most of the world’s children will still go to bed hungry.

 

Christmas is not something I enjoy much anymore. Meagan is needy. I hurt for her, but I don’t know how to help her. Dan is ok. He's happily married and playing daddy to Ashley's two young kids. Both Dan and his sister are far away, and they’re not speaking to each other.

 

I still have to endure the awkwardness of a McPhail family gathering. They pretend they're a close family, but Colleen has no relationship whatsoever with her brother and sister. It's bizarre. And awkward. Wine is a big help. I don’t know when that’ll happen, exactly. But I’m sure it’s soon.

 

A dear Windsor church friend passed away on Monday night. She died in her sleep. The family has asked me to speak at her funeral which of course is the same day my sister has planned a Pringle get-together.

 

And Percy has a black spot on his hip. It could be cancer. He’s scheduled for a biopsy on Tuesday.  

 

Merry Christmas.