Dying Overcome

A non-fiction account of a stem cell transplant

by Peter Higgins

Published 2022

©Copyright MMXX

Table of Contents

1. Introduction

PART ONE – SICK

• Chapter 1 – November 2010
• Chapter 2 – December 2011
• Chapter 3 – November 2018
• Chapter 4 – March 2019
• Chapter 5 – June 2019
• Chapter 6 – August 2019
• Chapter 7 – November 2019
• Chapter 8 – January 2020
• Chapter 9 – Chemo Phase One
• Chapter 10 – The Following Day
• Chapter 11 – The Apartment – February
• Chapter 12 – March
• Chapter 13 – April and May
• Chapter 14 – June 4th, Thursday
• Chapter 15 – Last Day of Chemo
• Chapter 16 – Rest Day
• Chapter 17 – Stem Cell Transplant
• Chapter 18 – Day One
• Chapter 19 – Day Two
• Chapter 20 – Day Three
• Chapter 21 – Day Four
• Chapter 22 – Day Five
• Chapter 23 – Day Six
• Chapter 24 – Day Seven
• Chapter 25 – Day Eight
• Chapter 26 – Day Nine

PART TWO – HEALING

• Chapter 27 – Day Ten
• Chapter 28 – Day Eleven
• Chapter 29 – Day Twelve
• Chapter 30 – Day Thirteen: Discharge
• Chapter 31 – Day Fourteen: Out of the Hospital
• Chapter 32 – Day Fifteen
• Chapter 33 – Day Sixteen
• Chapter 34 – The Rest of the First Week Out of the Hospital
• Chapter 35 – The Second Week Out of the Hospital (June 30 to July 7)
• Chapter 36 – The Third Week Out of the Hospital (July 7 to July 14)
• Chapter 37 – The Fourth and Fifth Week Out of the Hospital (July 14 to July 28)
• Chapter 38 – The Sixth, Seventh and Eighth Week After the Hospital (July 28 to Aug 19)
• Chapter 39 – The Ninth and Tenth Week After the Hospital (Aug 19 to Sept 2)
• Chapter 40 – The Eleventh Week After the Hospital (Sept 2 to Sept 9)
• Chapter 41 – Final Entry

PART THREE – BACK HOME

• Chapter 42 – October 1, 2020
• Chapter 43 – October 20
• Chapter 44 – October 28
• Chapter 45 – November 22
• Chapter 46 – December 11
• Chapter 47 – December 18
• Chapter 48 – December 31, 2020
• Chapter 49 – January 4

PART FOUR – AFTERMATH

• Chapter 50 – February 14, 2021
• Chapter 51 – March 8
• Chapter 52 – March 25
• Chapter 53 – May 12
• Chapter 54 – May 22
• Chapter 55 – June 3

PART FIVE – FINAL THOUGHTS

• Chapter 56 – July 1
• Chapter 57 – July 21
• Chapter 58 – August 31
• Chapter 59 – November 30
• Chapter 60 – January 9, 2022
• Chapter 61 – February 16
• Chapter 62 – Last Chapter

EPILOGUE

Introduction

Life can be boring when everything is fine and one is healthy. It is only when one is dying that one truly throws themselves into what it means to live.

And that’s what happened to me seven years ago when I was diagnosed with scleroderma – a fatal disease with no cure. That was in 2012. The doctor said that with medication I could maybe live a normal, long life but that didn’t happen with me. And the reason why it didn’t really sucks. My doctor told me to stop taking my immune suppression medication because she thought I had been misdiagnosed, so I did, but then it spread into my lungs, which gave me pulmonary fibrosis. And this is a faster kind of fatal – the twin brother of cirrhosis of the liver except of the lung – the same two proteins in action progressively destroying the lung, day by day. The day we learned from x-rays I had this deadly lung disease the doctor knew she had screwed up, so she asked me: “Would you want to get a lung transplant?”

I didn’t need to think about that one. “No,” I replied.

“Well then we have had some success with a stem cell transplant. What about that?” A light went on in my mind.

“Yes,” I said, not knowing what that treatment was or entailed. Anything so I had a chance of living. And so because the doctor had messed up she put my name in for the stem cell transplant with a specialist in Ottawa. I had zero idea what to expect, nor how horrible – and beautiful – it would be.

But at time – August of 2019 – I could hardly breathe. And that was scary. During a six-minute walk test my oxygen levels went down to 75 percent. Not good. In fact very dangerous. But again this act of slow death further forced me to see what a day is, and how to see the beauty in all the aspects of a day. When ones mortality is right around the corner, one tends to shed the stuff that doesn’t matter and as a result of this learns to seek and see the truth.

And I liked this change in me. And so did my family and so did my friends. There was a new decisiveness I had and a firmness of opinion that I felt obliged to voice and it flowed out of me unforced and naturally.

It gave me the impetus to become who I am.

But as I faced this slow death, slowly suffocating day by day, this new treatment with stem cells was a potential lifeline, so I was thrilled when I was accepted into the treatment after numerous invasive tests. For me it was: you can throw anything at me for six months at the hospital because at the end of it was life. I would walk away with healed lungs, soft skin and unclenched hands. I would become Pete Higgins 2.0

But I didn’t know how dark it would become, how brutal the treatment was and how barbaric it all would be. I couldn’t foresee my lungs becoming so bad that my natural breathing oxygen levels fell to 75 percent and that at one point the pilot of a plane I was on turned around the airplane to return me to Ottawa General Hospital because I had passed out on the flight. I never expected to spend two weeks in intensive care on pressurized oxygen as I recovered from a serious bout of pneumonia. I’m sure that a hundred years from now this treatment won’t exist. It was, as it were, the best treatment at the time, just like bloodletting was a few hundred years ago.

But let me start at the beginning. My aim is to provide the reader with a crisp, accurate account of what has transpired during this incredible medical journey.

PART ONE – SICK

Chapter 1

November 2010

The moment I thought something might be wrong was when my girlfriend asked me to plant some cedar trees along the boundary of her newly purchased property. It was something I had done on my own property so I was more than happy to help her out. But I found when I was handling the trees that my hands were sore. They felt bruised and weak and maybe even a bit swollen. I had just written a novel and thought I might have carpal tunnel syndrome. I had just finished the book so I took time off from writing but my hands were still sore. So that’s when I went to my family doctor.

“You could have carpal tunnel syndrome but it might be something else,” he said, so he made an appointment with a specialist in Toronto. I went to see her and she did some tests but she could not determine what the problem was.

“If it persists, come back and we will do some more tests.” Fine. I was pretty sure it was from too much typing. I was a healthy guy who had never had any health issues before.

In fact that summer I had run my own painting company, spending my days outside painting houses and making lots of money. I was in great physical shape, I was writing a novel every winter and I was planning to spend the year teaching in Ecuador. Life was good. But I also didn’t know that I had been exposed to lead paint at one of the jobs I did and I had inhaled some of the scraped-off lead paint into my lungs, which had triggered my immune system to attack my joints – namely my hands. Only later – after a blood test – did I learn that I had the HLA-B27 gene that was responsible for rheumatoid arthritis. And that lead paint had been the trigger to kick start my immune system to begin attacking my joints.

And so I managed my hand pain and left for Ecuador in June of 2011.

Chapter 2

December 2011

I did some teaching but I was earning enough money from my rental properties that I decided to quit my teaching post and write and party full time. I had a great time in Ecuador, meeting all sorts of cool people there. There is something undeniably magical about Quito, being more than 10,000 feet above sea level and right on the equator. It was easy for me to understand why the Spanish had made Quito their home base to build their colonial empire in the New World.

But my hands still hurt. And the swelling increased. I have a pretty high tolerance to pain and kept putting it off, still thinking that I had carpal tunnel syndrome, but one day in the fall the Dane I was partying with commented that I needed to have my hands looked at. So with the help of a local I went to the police hospital, which my friend said was the best medical care in the city.

And he wasn’t wrong.

Immediately I found the right doctor and the right care. And she had some bad news for me: I had scleroderma. It is a rheumatoid arthritis that attacks the hands, feet, knees, lungs, GI tract and esophagus. It is a fatal disease with no cure.

The doctor was an American-educated specialist who was confident in her diagnosis but I was shocked and in disbelief. She prescribed me to take prednisone every day as well as methotrexate once a week. The prednisone was to reduce the swelling and the methotrexate was to suppress my immune system so it wouldn’t destroy my body as fast.

Now anyone who experiences this – going from a perfectly healthy dude to hearing he has an incurable fatal disease when he is in his prime – goes through a hell of a shock. One’s entire system of belief and one’s life perspective goes through a serious renovation stage when everything you once believed is turned upside down. Decisions one would make if one expected to live until they were 90 years old suddenly change when one thinks he will be dead in ten years. I was 44 years old!

So I went into a tailspin while I lived in Quito, choosing to party and not to go gentle into that good night. In fact I was so freaked out with no friends or family around me I proceeded to party so hard I lost about 40 pounds. Cocaine numbed the news and helped me to think up a new plan for my shortened life.

And the medication changed me too. The prednisone lit a fire under my ass, as if I were fueled by a high octane diesel. I stayed up for three-day parties regularly, once staying up for a whole week without a wink of sleep. The steroid made my muscles tense and put an anger in me that was new. I had adrenaline running through me for the first time. It was a combination of the prednisone steroid and my new bitterness at the world that I was fatally ill. And I think the methotrexate trying to suppress my immune system also caused my system to rebel and produce adrenaline.

I became a walking live wire filled with anger and bitterness. And cocaine.

But I knew the best care in the world for scleroderma was in Toronto at Mount Sinai Hospital on University Avenue. So rather reluctantly I flew back to Canada and sought treatment there. But they only said to me to continue to take your prednisone and methotrexate and we’ll see you in twelve months.

And so the years passed by like this. Until my rheumatologist died and I had a new doctor.

Chapter 3

November 2018

My new doctor was young and seemed to treat my differently than my more experienced old doctor. But I trusted her since she was the expert and I was the patient. I saw her for a few years with no changes. I spent a lot of time keeping in very good physical shape, always trying to mountain bike and stay fit in order to stay healthy and not let this disease take over. The medications were working so I was on cruise control.

Until November in 2018, when my new doctor said that she thought I had been misdiagnosed. She was confused that I wasn’t sicker. She couldn’t accept that I was still so healthy despite having scleroderma for more than seven years.

So she told me to stop taking my medications.

“What? Like right now? Today?”

“Yes. Just stop taking them. Today.” She hadn’t done any blood tests or any other tests but I still believed her and was in fact kind of excited that perhaps she was right and I didn’t have scleroderma.

Little did I know how wrong she was.

Chapter 4

March 2019

It was in March that I was beginning to feel a hardening of my skin. The term ‘scleroderma’ means ‘hardening of the skin.’ I began to feel hard ripples in my arms and then a hardness in my skin throughout my torso. It felt like I was covered in skin-coloured armor. And the ripples were hard. I could run my hand over the ripples and feel them.

But then I began having trouble with swallowing. And with breathing. At night when I was in bed I would suddenly involuntarily breathe in violently, as if I had stopped breathing. It happened more and more. I thought it might be because I was still smoking and my lungs were reacting to too much tar and nicotine. But I stopped smoking and it progressed. And then I would swallow involuntarily too. My throat would just suddenly close.

And then I noticed I was easily out of breath from doing the simplest things.

That’s when I went back onto my medications and called my doctor. I went in to see her and she took an x-ray and I went back and she told me I had interstitial lung disease. Immediately, I knew what that meant. I had five years to live.

Strangely though I wasn’t angry at my doctor. I was just sad. Very, profoundly sad. I sat there in her office after she left and cried. Those tears were so bitter. I was going to die early. I would be dead before I was 55. I just remember sitting there stunned. Saddened. Bitter. I felt like I was being cheated out of having a full life to live. But strangely I was comforted by the fact that I had lived a full life. I had traveled and written books and met people from all over the world, choosing a life of action over a routine life of regular paycheques and conformity.

So there was that.

But it was that day in the doctor’s office when she asked me if I wanted a lung transplant. Absolutely not I replied, but when she mentioned a possible stem cell transplant, my hopes lit up.

“Yes,” I said. “Yes, I’m in.” She explained that she would submit my name to the hematologist in Ottawa for consideration but that there were a series of rigorous tests to qualify for the treatment. She told me to expect a call from Ottawa in the next few months.

Chapter 5

June 2019

This was the month I had the call from Dr. Harold Atkins, head of the Bone Marrow Transplant team at Ottawa General. He had a few questions for me about my health. I told him I had a shortness of breath and that I had trouble swallowing and that my skin was now hard and rippled.

“Yes, I see that from your file. Classic symptoms of scleroderma.”

“I was perfectly healthy for years until I was told to stop taking my prednisone and methotrexate,” I said, “So it’s been a real drag getting sick.” He laughed.

“Yes, I would imagine that is the case. So you are interested in coming to Ottawa for treatment?”

“Yes!” I replied.

“Well before you say that, let me tell you what the treatment is.” He then went on for ten minutes with a very detailed description of each step and what it did and why it was done. About halfway through his description I began to think it was too hairy for me, especially since I hate needles. It sounded like a non-stop train of needles and lines inserted into veins and chemo and bone marrow transplants and everything but the kitchen sink.

“Yes, I’m very interested.” I had no choice. Either treatment or suffocate to death.

“Okay then, I will put you on the list and we will consider you. Once we have made our decision, we will call you. Does that sound okay?”

“When?”

“Over the next few months.”

I must say I was dismayed with this because now it was their turn to decide if they would accept me. But there was nothing I could do but be patient.

Chapter 6

August 2019

“Hello Peter.”

“Yes.”

“We have decided you are a good candidate for our procedure. Could you come to Ottawa and have some tests on your heart?”

“Yes, yes. No problem.”

“Okay. My secretary will get in touch with you to tell you the time and address of your heart test.”

“Great.”

“Any questions?”

“Yes, what is the test exactly?”

“We insert a long measuring device into your artery in your arm and push it into your heart cavity to measure the force your heart pushes your blood through your venous system.”

It was then that I learned sometimes it is best simply not to know certain things. It would have been much easier for me to show up not knowing the invasive nature of the test, so now I had that knowledge that my imagination would use to keep me up at night with worry and anxiety.

“Okay, no problem. I can be in Ottawa any time.”

“Good. My secretary Patty will be in touch with you.”

A few days later I had the information of the time and place for the heart test. So I took a few days off work and drove to Ottawa and had the heart test. Strangely, once the line was in my artery I couldn’t feel a thing. This is because there are no nerves in the artery. So it felt like a large needle going into your vein and then that was it. Some wiggling around at the entry point and quite a few “eehs” and “aahs” by the doctors and the sound of my heart pumping. And so the data was collected and I had passed my first test.

“You have a strong heart Mr. Higgins. And by the way: cool tattoos.” He was a cool doctor.

Chapter 7

November 2019

There was a long stretch when I didn’t hear anything from Ottawa, which was a drag because I had become really sick. I had a cough and my breathing was even worse. I was dying in slow motion so everything hinged on the telephone call from Dr. Atkins.

“Hello? Mr. Higgins.”

“Yes, speaking.” I knew it was him.

“Yes, we have had a look at your heart test results and see a good and strong heart. We have reviewed your case here and would like to see you here in Ottawa for a checkup.”

“I see.”

“Can you be here at the end of next week?” I agreed and took down the information.

I left the following week for Ottawa, finally meeting Dr. Atkins.

“Good to meet you in person finally,” he said, his smile easy, his beard flecked with white. He was a slight man who looked like a scholar. A learned man. Gentle. I took an immediate liking to him.

“You are here so I can check your health.” He proceeded to take my blood pressure, heart rate and oxygen levels before beginning the real analysis. He felt my skin and nodded at how hard my skin had become. He listened carefully to my lungs through his stethoscope. I told him about my involuntary swallowing and about the gasping for breath at night.

“Yes, these are common problems with scleroderma patients.”

Then again he explained the different stages of the treatment, and I again felt I could not survive the barbarity of it.

“Are you okay with the treatment?”

“Yes, I think so. I am sick and this treatment is the only way to save my life.” He nodded.

“Well from what I see I think we can offer you a place in our treatment program. How does that sound?”

“Amazing. Thank you sir. That’s great news.”

“Okay, so we will begin with the collection of your stem cells at the beginning of the new year. January 2. That means we would like you here on New Year’s Day. Is this okay with you?”

“Sure, no problem.”

“We will put you up in the apartment beside the hospital but you will need a caregiver with you to help you through it. This first phase takes about two weeks. And then you can return home until the second phase begins late February.”

“Okay.”

“Do you have a caregiver?” I didn’t but I was sure I could ask my sister to give me a hand.

“Yes, my sister.”

“That sounds fine. My secretary will send you the details of the apartment and the times.” I think it was at that point when I began to weep.

“I can’t thank you enough for this Dr. Atkins. Really.” He smiled gently.

“I’m glad we can help you,” he replied, eyes bright like a savior.

Chapter 8

January 2020

A morning of planning. Nurse, doctor, and pharmacist – each explaining stages of treatment over the next six months. I am in Ottawa at the hospital to begin the treatment. This first phase is to gather my stem cells from the bone marrow.

“The immune system typically produces antibodies to combat infection, but for those with autoimmune disease like you your immune system creates antibodies that attacks your joints and specifically for you your lungs and esophagus,” said the nurse, earnest and interested. “These antibodies are rogue. The wiring in your body is haywire so that is why this happens. That’s just the way it is. So what we’re doing here with your treatment is trying to fix this. How do we do it? We begin with a bout of 24-hour chemo. You come in on Saturday and we attach an IV and give you the chemicals you need to kill the rogue antibodies in your bloodstream. We want to get rid of the antibodies in your blood cells that attack your body.”

“The corrupted antibodies,” I say.

“Well yes, corrupted. That’s a good way of putting it. So you have uncorrupted stem cells inside your bones – in your bone marrow. And we want those. We want to take them out of your bones so that when we decimate your body with chemo next month we will reintroduce these good uncorrupted cells into your bone marrow to repopulate your system. Then your body should be free of the corrupted antibodies so that your health should return to normal.”

“Okay.”

“So tomorrow we give you the chemicals that will expel your corrupted blood cells, and then we give you a drug that causes the good blood cells inside your bone marrow to explode outwards into your bloodstream so that we can take them out of you, or harvest them from you. We kill the bad stuff, give you something that will cause your pure stem cells to come out of your bones so that after a week of this (you give yourself two injections every day for ten days), we put a line into your arm and take your blood, capture the good stem cells and then actually put the non-stem-cell blood back into your other arm, wasting nothing.

“We take these stem cells and put them in the fridge until we need them when we put them back into your body the following month. They are sent to the blood bank here in Ottawa to be treated.”

“Treated?”

“What they do is to whittle the blood down to just the stem cells, readying them for reintegration into your bloodstream come late February when you are ready for them.

“You go home, rest for three of four weeks and then return here to the hospital where we give you a week-long large dose of chemo to obliterate all the bad antibodies in your system. We wipe out the army of corrupted cells so that after a week of this bombardment of chemical poison we put your healthy stem cells back into your bone marrow where it will regenerate into the rest of your body, leaving you with clean, uncorrupted blood with no rogue antibodies to attack your joints or lungs or esophagus so that you are disease free and able to live a normal, healthy life again. How does that sound?”

“Sounds pretty amazing, man.” The enthusiasm of the nurse was palpable.

“It is amazing. I agree. But there are some risks – serious risks. There is a five-percent chance of a serious, very serious problem, such as irreversible organ damage or death, so we need to be meticulous and careful throughout the treatment. For example just after the big, weeklong chemo you get next month your immune system is decimated, I mean zero so you are very vulnerable to infections and sickness, so that’s why we pump you with antibiotics and keep you in the bubble in the hospital, keeping you away from germs. And as you know from the pre-treatment tests you must have a strong heart. Some patients in the past have died from heart issues that can arise from the treatment because it is tough on your body.

“But as soon as you are given your stem cells you should begin to feel rejuvenated; feel life flow through your veins that strengthen your system and fortifies your health. It takes time to rebuild but you are rebuilding without any hindrance from the dark army of corrupted antibodies that litter your system right now. So it will be tough going but at the finish line is more life. I can’t think of anyone who wouldn’t want to fight for that because right now you have about a four-year life expectancy, with the final 24 months pretty gruelling – slow suffocation and carbon dioxide poisoning and organ deterioration and general breaking down of functionality, not a good way to end your life. Trust me you are very, very fortunate to have been chosen for this bone marrow transplant.”

“I am. I’m feel very fortunate. I’m thrilled actually. But scared, but now that you have described the process I must admit I’m not as anxious or fearful as I was before. So thank you for that. I’m eager to crush this rogue army of antibodies roaming around inside of me with some potent chemicals. And I’m psyched for what’s to come vis-à-vis the pain and nausea.”

“The bone pain can be pretty severe so don’t be too old school and endure the pain. Take the codeine pills we give you for the pain. Trust me. Don’t be a hero. Follow the protocol and take the medication just as we lay it out. Here, take this schedule. It shows you when and what to take over the next two weeks. When you come back next month we will then have another meeting as to how to proceed through the big chemo and the bone marrow transplant. We’ll cross that bridge when we come to it.”

“Okay. Thank you for this. A schedule is something I can follow. And it clarifies the flow chart of events too.”

“It is a lot to remember right now. A lot of information so just take it day by day, but remember, tomorrow you must hydrate. The chemo is a poison that is killing your dark army of antibodies so it needs to be flushed out swiftly. If not the chemicals can damage your bladder and kidneys. Hydrate every hour, even throughout the night. Remember, we’re just getting rid of the bad stuff in your system so we can harvest the stem cells inside your bones, so when you start injecting the Grass-to-fill the following day for ten days you are bringing out the good, pure cells we want from your bones. This will cause rather extreme bone pain, which is a whole different kind of pain.”

“But a necessary pain.”

“Yes, it is a necessary pain.”

“Then I’ll be okay with it. Because it will get me to where we want to go.”

“Yes. Precisely.”

“Any questions?”

“No, not right now. You’ve explained everything. And I have the schedule so I’ll keep to it, take it day by day and endure the pain by thinking of baseball.”

“Baseball? Oh, I see.”

“Actually I do have a question though it might be a dumb question.”

“No such thing.”

“These corrupted antibodies, are they white blood cells or something else?”

“That’s right: they’re white blood cells that are responsible for fighting off infections. So we will give you brief chemo to cleanse your system of your white blood cells with 24-hours of chemo, and then you start injecting Filgrastim (or as we call it ‘Grass-to-fill’) into your tummy every morning at 8am for ten days. What this does is cause you to produce white blood cells from your bones but these are not yet corrupted so from this explosion out of your bones we can capture the pure ones.”

“So this grass-filler is a pretty serious med?”

“Yes. Taking it will populate your bloodstream with uncorrupted white blood cells from which we can extract your stem cells. When we ‘harvest’ them from you in ten days we make sure we have taken enough before this first phase of your treatment is over. We actually have a machine that counts the number of stem cells we collect. If after the first day we don’t have enough then we ask you back for a second day of harvesting, but we usually are successful on the tenth day. But make sure you follow the schedule and take it every morning. The doctor will show you the best way to inject it into your stomach tomorrow when you get your chemo.”

Chapter Nine

Chemo – Phase One

There is an initial euphoria when the chemo hits but then hours later I am hit with a severe headache, heartburn and heaviness as well as shortness of breath and a sort of thickness of limb. Feels like my arms and legs are turning into a solid. Dangerous. And hydrating is tough. So much water and electrolytes…

Getting the chemo was pretty simple: they inserted the line into my vein in my arm and gave me the chemicals. It was only a small hit of chemo to kill off the bad antibodies to clear out my bloodstream so they could collect the good stuff from my bone marrow. But when I left they kept the line inserted into my arm and added a plastic bag of electrolyte-filled water that was attached to a pump to insure I was hydrated enough so I could expel the chemo. It was like a self-sustaining hydrating system. But the nurse had been very clear that I needed to hydrate by drinking lots of Gatorade and water, so when I returned to my medical apartment I drank lots of liquids.

I ended up drinking too much. I didn’t know one could drink too much water and get drunk from it. And I did feel drunk, but it was also super dangerous.

When it happened it felt like instead of using 13% of the human brain I was using 100%. I could see and hear everything from all over so that I had to close out it all and try to keep my focus on something in front of me. The wall or the light on the screen, anything to focus on and cut out the cacophony of voices of people speaking to earnestly and urgently. But most of all time seemed to stand still. Time stopped – moved forward at a drugged snail’s pace, my watch not moving forward yet deafened by how much was transpiring in each passing minute. A day’s worth of events and intensity passed through my brain in blinding insights, exploration of my inner body, the hard beating of my heart and the profound realizations that I was facing the last moments of my life. Everything was secondary to me pushing it all away to at least be in touch with the incredible and sad irony that this was my end, the result of my own stupidity during what I knew was a risky treatment. The aching sadness was intermixed with a vital curiosity of what the end exactly was like, what walking through the doorway was like, the last moments were like.

I sat in the ICU hospital bed beside doctors talking but I could not understand what they were saying. Thank God my sister was there by my side.

I knew my body was shutting down. My legs were heavy and felt like lead. My chest was convulsing as my lungs struggled to get air in. And my esophagus was in a fit of involuntary hiccups. And each convulsion of my lungs made my heart explode, putting it on the edge of bursting like an over-revved engine. The manifestation of the physical pain in my chest keep knocking me back into awareness that the end was here, and that my system was broken – broken by my own hand.

Too much water. Yes. They told me to hydrate so I did, and that the more the better. And Gatorade with electrolytes, so that I peed the chemo out of my system to cut down on the possibility of bladder infection or kidney problems. And so I did. But they didn’t specify limits. They didn’t say drinking too much water to flush out the chemicals was a risk. In fact I had no idea that two much water could cause such severe sickness. Granted I had just had a two-hour chemotherapy session and had taken six different medications that come with the liquid chemicals that streamed into my arms via an IV bag. Drip, drip, drip. And then I left but they also gave me an electric pump and they attached it to the line in my arm that pumped a bag of electrolytes into my vein. Powered by batteries, the little pump did exactly what it was supposed to do: pumped the electrolytes into my bloodstream for 24 hours as I spent the day and night back at the apartment until my appointment the following morning.

All was to go smoothly but it didn’t.

They spent so much time emphasizing how important it was to hydrate so I did. But I was too overzealous.

It was all going well. When my sister and I returned from the hospital she was tired from too much wine the previous night, and a long day at the hospital being my caregiver, so she went to her room for a nap. During her two-hour nap I worked on hydrating, drinking many cups of water and a Gatorade and a Ginger Ale – all beverages that were recommended by the nurses. But I drank so many in my eagerness, perhaps a dozen. I was so obsessed with making sure I peed out the chemo so it didn’t hurt my bladder and kidneys. But not having known too much was bad for me, I must’ve have more than a dozen. I peed at the two-hour mark and felt I had achieved the first and most important one since I knew it would be flowing out of me every two hours. But I must’ve been carried away because I kept drinking, at a much slower pace of course, perhaps characteristically of a drunk feeding from a free bar. It wasn’t until my sister came out of her room and saw the Gatorade bottles and Ginger Ale cans on the kitchen table that she raised the alarm.

“She said one cup an hour!”

“That was more of a recommendation, but she said that the more the better. As long as I was peeing every two hours.” Being a veteran marathon runner she was aware of the dangers of too much water, from incidents of runners dropping dead from drinking too much water.

“No, no. Listen, I’m going to call the hospital to clarify.” So she called but it was just after 5pm so our contact nurse had gone for the day so she spoke to someone else, who assured her that if I had drank a dozen drinks then as long as I was peeing every two hours then it was okay. So she hung up and we thought we were fine. I slowed down the ingestion of water to barely one an hour until seven when I started feeling heavy. Drunk of water. Poisoned by chemicals. With this little electronic pump making a noise every few seconds reminding me that it was pumping more liquids directly into my arm. I had flooded my body with liquids so now it was heavy. And slow. And sluggish, as my head started to be. The headache burned but I assumed it was from the chemo. My eyes became heavy. My arms heavy. So my sister suggested I go lie down so I did, and I felt better, putting my heavy body horizontal and safe under the covers, the electric pump balanced as it should be, carefully standing up against the pillow just beside my head.

But that’s when things took a turn for the worse. My mind started to go off in a direction different from the one I was used to. I looked at the alarm clock on my bedside table and it wasn’t moving forward. My sister Susan had placed a glass of water on my bedside and yelled at me to drink it before the next two-hour piece was done. I tried but I couldn’t – not because I didn’t have the will but because I couldn’t really control my arm coordination. And I couldn’t comprehend why the time was staying still. I kept calling my sister into my room telling her there was something wrong with the time, that my legs were heavy and that I had a headache.

“That’s chemo. That’s what chemo does.”

So I endured, but I started convulsing. My lungs, already hampered by pulmonary fibrosis, suffocated in my newfound waterlogged state so that my chest heaved upwards violently gasping for air. I inhaled deeply, pushing my chest out and putting such strain on my heart that it felt like it was going to rip apart. Terrible, terrible experience, but the most intense thing was my mind. I had lost the ability to think clearly yet I felt like I was aware of a new reality – one that required one to use their entire brain, and not just the 13% we as humans reportedly use. I was suddenly on the threshold between life and death – an innate perception that was as old as humankind. I felt fear and wonder and a deep sadness that this was the end – that I would be one of those five percent that died during the procedure because at that time I was still not aware that it had been due to too much water intake. I was simply too sick and the chemo was simply too much for my battered body.

After calling my sister again into my room, I confessed that I had lost track of time and that she had to take care of me – watch out for me. Call me when it was time for my next cup of water. But the time didn’t pass. So I called her in again. And that was when she looked at me with worry in her face.

“There’s something wrong with you. You’re not right.”  

“I can’t follow time. Can you call the nurse again?” But that was the extent of what I was able to say, curled up in the fetal position on my bed completely scared and confused and convulsing. “Maybe I should barf to get some of this liquid out of me. I’ve had too much. I need to unhydrate.”

She called her and stood in front of me: “He’s confused and is talking about he’s lost the ability to follow time and that his legs are heavy and he’s convulsing and hiccupping non-stop.” There was more discussion until she said: “I’m bringing him to the hospital. We’re leaving now.”

Finally I thought, finally. Something is wrong. But I won’t make it to the hospital. My heart was going to explode as I stood up, or en route. I slipped on my jacket and Susan said: “Bring the bucket,” pointing at the garbage bucket in the corner of the bathroom. “I don’t want you barfing all over my Jeep.”

Walking outside I was convinced I was going to fall dead, convulsing in air into oxygen-starved lungs. Weak, pathetic, ironic death on some parking lot in Ottawa at some apartment beside a busy street. After such an extraordinary life. So not cool. Yet so unique. An unusual death. But would anyone really know what had happened?

“We made it into the emergency room Saturday night at 10:38, my sister immediately checking in at the admissions window and me showing my health card. Immediately the woman behind the window had concern on her kind but experienced face – a face of a million wisdoms. She carefully spoke to me as if I were a child.

“What is your name? Do you know where you are? What is today’s date?” I answered them all but it took an Olympic effort to focus out all of life I was experiencing all around me with my opened-up brain. Her eyes studied mine, looking for signs that I was perhaps on drugs. Susan explained the chemo and that I might have had too much water. She directed me to a wheelchair where I sat feeling for the first time like I had permanent brain damage. That I had become that guy who had caused his own brain damage from screwing up his stem cell treatment.

All I can say is that was a very lonely moment sitting there in the emergency waiting room dying with a hundred people staring at me.  I blocked all of them out and dwelled on my sad ending.

But then the doors opened and I entered a series of rooms of high-tech equipment – an inner sanctum of screen and equipment and only a few beds. It was for the extreme cases.

It was around this time that I started to simply let go – let my sister speak for me as I sat there with two doctors looking at me. Questions came but I can’t remember if I answered. I don’t remember being put on the bed. The next thing I remembered I was lying on the bed and it was 3:30am and I had a tube in my arm, sensors on my chest for an ECG and a warm blanket over me.

“Peter?” A Chinese doctor stood in front of me. “Do you where you are?”

“Yes I do. Ottawa General.” But I was weak and limp.

“There is a possibility that it might be better to put you into an induced coma in this situation. Do you understand?” I said I did. “And are you all right with that? That we do that?”

I remember looking at my sister for a moment, and then said: “Whatever you have to do.” All I wanted to do was live. I was there in this strange hardware store-looking inner sanctum on the emergency room of Ottawa General in Canada’s capital city and I was convinced that I would not survive, or at the very least be affected with permanent brain damage – that guy who never quite can tune into reality anymore. I didn’t want to be that guy. I couldn’t be that guy. So to be put into a coma meant I could at least survive, and that was okay, but I still knew I wouldn’t make it through.

But for me because I was convulsing so much I kept saying I was going to have a heart attack. I couldn’t stop. That was the biggie. So it was right around this time they put me on oxygen. And that knocked me out. And then some time during this period they gave me something to alleviate the liquid in my lungs. I was out for hours. Warm under the blanket. Momentarily safe. Convulsing and hiccups subsiding. Some element of calm during the storm.

Then I was woken up again by the cool Chinese doctor.

“Peter how are you feeling? We’re worried you might have a swollen brain so we are going to take you to get a CAT scan. Do you understand?” At this point, after a few hours of sleeping under the warm blanket, I felt a little bit more focused when I looked at him, as if I could break through the ongoing cacophony all around me to focus on the doctor’s eyes.

“Okay, I understand.”

“And we are going to look at your chest too.” They helped my into the wheelchair but the fog had started to lift. For the first time I thought that maybe this was how it was going to be – my new reality. Out of it but somehow still connected through an old battered string.

“I sort of enjoyed the ride down the hallways into the CAT scan room where there were four people waiting for me and no one else around the entire hospital. Empty. 4:00am Sunday morning. January 5th. The young woman there had nothing but empathy for me, the worry clearly etched in their features, and then two young men there solemn, quiet with respect and pity. They took their pictures and I tried to hold my head up with some dignity, to get it done and accept my new reality as the guy with the brain damage.

They soon rolled me back to my bed and I was back under my warm blanket. That was when I looked at Susan. She was a wreck. So distraught. Did she think it was her nap that was to blame? Was she dealing with an unacceptable event that would ruin something in her life? Yes, I could see it in her face. I wanted to say something but neither of us could. The word brain damage floated there dry as a bone, hanging, and untouched, and unwanted.

I could only close my eyes and wish for my hiccups to stop. Soon they did but just as I was floating away the doctor returned and said my CAT scan had shown no brain swelling. But something in me wondered if he was telling the full truth. We were all relieved but I didn’t believe him because I still had hardly any ability to concentrate or speak clearly. Terrible, chilling thoughts.

“Peter I think you will be okay. Just rest here and we will be back.”

And so I slept. They took more blood and they turned up the oxygen, which calmed my lung convulsions. For a moment, just a glimmer, there was some hope. And so I rested in earnest. What could I do? Throw myself into sleep and hope I wake up normal.

So that’s what I did.

I’m not sure how many hours passed but I think it was around 9am that I opened my eyes. And it was only at that moment that I knew I was back – still foggy but no more screaming brain and no more convulsions. I looked at Susan and knew I was going to be all right and I had her to thank for saving my life. They prohibited me from drinking anything all day until I expelled enough of the chemo out of my system so they installed a catheter, the worst moment of the night. It burned badly every time I peed but man did I pee! Like a volcanic, hot lava pee waterfall! Burned! But somehow incredibly satisfying, each burning drop saving my life and bringing me back to that which we call life.

I was groggy but I made it through. I had to have the catheter removed because of the pain so this nurse did it with the utmost finesse. Free from the penis pain, and still on oxygen that seemed to really mellow me out, they moved me to another ward near emergency until a bed was ready for me upstairs in the hematology department, where I was to end up anyway. They were to monitor my sodium levels for the day and only let me go when they had returned to normal. They simply could not let me go into my continued treatment out of sync with the protocols. So that exactly what they did. They took blood from my arms every four hours for the next 24 hours, poking my swollen arms with sharp needles, most of the nurses using the grace that revealed a medical worker who truly cared. The worst of it was peeing into a bucket so they could analyze my urine, after it passed through my smashed up catheter-traumatized penis. But I made it through the day, learning from the doctor that my sodium levels had dropped down to 117 from the normal 136. Dangerous. Now the worry was gaining the sodium too fast that might cause brain shrinkage that would damage the myelin around the brain. So I sort of slept as they kept coming in to take blood until finally my levels had started to drop again, which was good because it meant they bypassed losing too much too soon. So I went on IV and stayed on the IV for the next 12 hours.

I made it through. But the greatest glory when I walked out of the hospital in the late afternoon the following day was that I was normal again. Even better. Wiser. More profound in my appreciation of life. Somehow firmer in my voice. More confident to have survived it and returned. Determined never to take life for granted ever again. And I knew that my sister had saved my life. And after so many years estranged, it was the greatest gift. It was a bond – a debt – that I could never forget. We had reunited and she had stepped up to the plate and was a rock who ensured I live not matter what the cost.

Except for barfing in her Jeep.

Chapter 10

The Following Day

My sleep was pure. I didn’t move all night but what was interesting were my dreams. Clear, alarming, profound.

Now was the time to administer two injections into my body each morning in order to facilitate my stem cell harvest in ten days’ time. I’m not crazy about needles but to inject myself into the layer of fat on my stomach or thigh didn’t seem that bad so for the first few days it went pretty well. I read the instructions and the pamphlet about the injections and learned that I was injecting myself with manmade E.coli. Sometimes having knowledge is a good thing – sort of gives you a firmer idea of what’s going on etc., but in this case this knowledge served to make me paranoid. I began to second guess where I was injecting into my stomach or thigh, worried about missing the layer of fat and hitting a vein instead.

My daily ritual of injections took on a monumental heaviness that served to make me more anxious and made me more worried about the possible problems that might occur.

For these ten days Susan and I were hunkered down in the apartment, me feeling less well as the days passed by. The doctors had mentioned that there might be “bone pain” because the injections were encouraging my stem cells to burst forth from my bone marrow to make the harvesting easier on the tenth day. But I did begin to feel bone pain, which is a very strange and scary type of pain.

My cough during these ten days became worse, and there was nothing I could take for it as I was supposed to be au natural for this period in fear of any extraneous medication screwing up or altering my blood for the harvest. So as each day passed my cough became worse and my breathing more laboured, and my sleep was interrupted by these new breathing problems. At the time I only suspected I had pneumonia.

Finally the tenth day arrived so I went to the hospital and they set me up in the stem cell harvest ward where they inserted a big needle into my big vein in my right arm where they extracted my stem cells. They put another line into my left arm, which took all they rest of my blood back into my system. The blood went through this machine that spun around in a manner that could trap my stem cells for harvesting. The maximum amount of time for extraction on one day was eight hours, so that’s what I aimed for. There could be several factors in a successful harvest, from the efficiency of the daily injections of E.coli I had administered on myself, to the availability of stem cells in one’s system to vein health and all sorts of other factors. So being as sick and exhausted as I was I was really hoping to reach the target of the number of stem cells needed for my successful transplant.

I was almost motionless for the entire eight hours.

Once the eight hours was up they disconnected me from the tubes and removed the lines from my arms and sent me back to my apartment awaiting the results of the daily count from the head doctor via email. The blood was sent to the Canadian Blood Institute in Ottawa and counted, and then much to my relief I read the email from the doctor saying that they had removed enough stem cells for my transplant, which was scheduled in three weeks’ time. This meant that I would not have to return for more stem cell harvesting the next day, which was a relief because of my exhaustion.

And I was tired of giving myself E.coli injections.

This also meant that I could leave Ottawa and go home in two days, catching a flight back home where I could relax and recuperate for three weeks until I had to return to Ottawa for the stem cell transplant.

I was exhausted the next day but I packed for my flight and prepared to leave Ottawa. But the day of my flight I woke up having severe difficulty breathing. I couldn’t catch my breath. Each time I stood up to get a cup of coffee I would become dizzy and need to lie down. My sister was yelling at me to hurry up so we could get to the airport in time for my flight (she was driving back to Toronto), but every time I would try to finish packing and get my things together I would need to lie down. But I was determined not to miss my flight so I forced myself to bring my bags and get into her car and get to the airport but still I couldn’t catch my breath. I thought my condition was from the withdrawal from the E.coli injections I had been giving myself and that I would recover later in the day.

Before we left the apartment I looked at myself in the bathroom mirror and saw a face that was gray. I was very sick.

When we arrived at the airport and I had to walk across the parking lot into the departures section I could hardly walk. I kept stopping to catch my breath and still unable to catch it I would force myself to carry on. Once inside the airport, my sister found a wheelchair for me, which helped. I checked in. My sister told the woman at the check-in counter that I had just finished a bout of chemo and that I was tired from it so they took that as the reason for my sluggishness. I was still very aware that my face had a grey hue that was very sickly and unhealthy looking, so in the back of my mind I knew that I was having a problem but at the same time was too weak to speak up and still determined not to miss my flight.

My sister left as I boarded my flight. I sat down and promptly fell asleep. I remember the stewardess coming around after we had departed but don’t remember what she said. My next memory was sitting upright breathing in oxygen from a tank and insisting that I felt a lot better. I thought maybe I was in the clear if I could just breathe in the oxygen but I soon was told that they were turning around the airplane back to Ottawa due to my health.

Man I felt guilty!

But my arms and legs were like lead and couldn’t find the energy to speak at all. They planted a doctor beside me during the 30 minute return journey just in case I had an emergency. I had passed out when we took off from Ottawa and when the stewardess walked passed me I had fallen off my seat. She woke me up and asked me if I was okay. I couldn’t answer so she gave me an oxygen mask. This likely saved my life. They did a U-turn over Kingston and returned to Ottawa. We landed and they escorted me off the airplane, everyone else remaining on the flight as they were about to leave again for Toronto.

I was received by paramedics who immediately took my vitals and were concerned about my low oxygen levels. My oxygen levels were at 75 percent. They set me up with an oxygen mask and they did an EKG on my heart, the results of which gave them some concern. I was loaded into an ambulance and my bag was retrieved from the airplane and then I was transported back to Ottawa General where I was taken into emergency and set up with oxygen and a line into my arm. There I sat for the rest of the day with hardly anyone speaking to me.

I would remain in the hospital for two weeks, the doctors trying to figure out what had happened to my lungs.

They quickly figured out that due to the fact that I had stopped taking my immune suppression medication in preparation for the stem cell harvesting that my lung condition had naturally worsened, but they also determined that I had pneumonia, so they administered me antibiotics via an IV for ten days. This was what saved me. The liquid in my lungs slowly dissipated and cleared up, enabling me to breathe better. And they gave me massive amounts of prednisone steroids to get the swelling in my lungs down.

These two things brought me back from the brink.

The first few days in the hospital were brutal. Just walking ten feet to the bathroom in my room was difficult, resulting in me being out of breath and as a result uncoordinated. I had an oxygen mask on and the nurses came into my room every four hours to make sure I was breathing in the oxygen and to take my vitals and give me more antibiotics. It was only after the ten days of antibiotics that I felt I had recovered my lungs sufficiently to operate somewhat normally, but the nurses had not been told to stop bothering me every four hours to check my vitals (blood pressure, listening to me breathe, checking to see if my feet/ankles were swollen, measuring my oxygen levels, etc.). And the doctors wouldn’t let me out of my room because they had not determined whether I had a virus or not, so I was locked into my room. In two weeks I lost 14lbs. I ate everything they gave to me but it wasn’t enough to even sustain my weight.

So after two weeks was up they sent me back to the apartment complex I was at before where I could recover on my own, spending my days walking outside but wearing an oxygen mask with the canister of oxygen in my knapsack. I was to re-condition myself and gain strength through exercise and continue on my high doses of prednisone to keep the swelling in my lungs down until the day of my stem cell transplant, which was to happen Feb 25th. I left the hospital after my treatment for my pneumonia on my birthday, Feb 2.

Chapter Eleven

THE APARTMENT – FEBRUARY

What was supposed to be ‘a few weeks’ ended up becoming over four months because COVID-19 lockdown hit. The waiting was tough psychologically but physically it proved to be valuable. After the extreme case of pneumonia and the antibiotics via IV that saved me, my mandate given to me by the doctor was to build up my strength again. So this is what I set out to do. By walking.

When I arrived at the apartment I was met by an oxygen specialist. She set me up with oxygen equipment after measuring my lung ability. The reading of my lungs was so bad that she was forced to leave huge oxygen tanks, not the smaller ones that I wanted, which of course I could not walk with. She returned a few days later with some smaller, more lightweight equipment that I could use while walking, which I did for upwards of a month. Every day I would go out for a walk with a small oxygen tank packed into my knapsack connected to my nose via a long hose. I walked through the residential area where I lived where there were not a lot of people around so I could cut down on the number of people staring at me.

I hated to be viewed as an invalid.

And it was cold – bone-chilling cold in Ottawa in February.

But I persevered with my oxygen tank set up using my knapsack to hide the equipment. I began walking only five minutes, which increased to 10 and 15 minutes and then to 20 minutes using the oxygen. These first few weeks I would be wracked by violent coughing, a surprise considering I thought the antibiotics had cleared out my lungs. Sometimes I would be hit with a coughing attack while walking, a sight no one enjoyed seeing especially in this new era of COVID. Most of the time I went into a coughing spasm right after my walk, as I sat in front of my laptop, cooling down from my walk. I would cough up gunk that was deep in my lungs so I knew the walks were doing me good.

Then during an appointment with my doctor that included a blood test, I had a call the next day saying I should stop one of my medications because my liver enzymes were elevated. So I stopped the medication and then, as per my doctor’ instructions, went for another blood test the following day. My enzyme levels were still high, so I should have another blood test in a week’s time. This was right at the time I was expecting to begin the final phase of my stem cell transplant – Feb 25th – so I was pretty disheartened to have it postponed because of wrong medication I had been given. Psychologically it was tough. So I decided I would do my walks without the oxygen.

The first few walks were tough but soon I managed to achieve 30-minute walks and less and less coughing. Since it was during the middle of winter in Ottawa I chose not to expose myself to temperatures colder than minus 10 C. I focused on eating well and being disciplined with my walks, so after a couple of weeks I found that I could walk farther and longer and coughed less than when I had first started out. By the eighth week I could walk one hour without oxygen – a normal walk. I didn’t walk as fast as I used to but I still walked at an acceptable pace.

I gawked at the nice houses in the neighbourhood to keep my attention from focusing on my heavy breathing, always hovering right at that point of coughing but not.

There was one day however that really scared me. I researched on Google Earth that there was a big church in the area so one day I walked to try to find it, which I did. It was about 35 minutes of walking so I thought if I could relax inside the church and pray as a rest and then return (another 35-minute walk). But the church for some reason was locked shut. So I turned around and started back to the apartment. Having a pretty good sense of direction, I decided to take a new route back, which proved problematic when I hit a dead end and a ravine – an urban planner’s best excuse to chop up the flow of roads. I ended up walking and walking until I finally was forced to turn around and go back to the church where I planned to walk back but at that point I was overcome with a coughing fit. It was scary because the phlegm was so deep inside my lungs that after I had coughed it up and spat it out there was still more blocking my breathing way deep within the reservoir of my lungs. So I coughed it up and spat it out and then again repeated and repeated, unable to walk a few feet at a time. To make it worse I was on the sidewalk in front of an elementary school just as the young kids were finishing their school day. And even more so, this was right in the midst of the coronavirus scare, which was why many parents were looking at me suspiciously.

What could I do?

So I called a taxi to pick me up at the church to take me back to my apartment – likely the first time in many, many years I have been unable to return to my place of origin due to exhaustion or ill-health.

It was a dreadful blow.

But I kept at it, going out for another long walk the very next day, which was just as long. And from that point onwards the coughing had all but ceased. So I think that church-walk day was when I reached the deepest recesses within my lung system and expelled the sickness.

So in my view, I had turned this pneumonia delay into something positive. As I am convinced that had I not disciplined myself and walked during my time at the apartment during February waiting for a hospital bed then I would have entered my final chemo/stem cell transplant phase still fundamentally sick and thus susceptible to serious illness and complications.

Chapter 12

MARCH

As the month passed I waited impatiently to be called in to finish my treatment. Then the coronavirus pandemic hit hard so things were put on pause. This was bad for me because it meant that I might be told to return to my home and thus risk not being called back to complete the treatment. I was pretty sick and high risk of not surviving the rugged treatment required to save me.

Other than making daily efforts to improve my physical health, such as walking, I was most concerned with a sore throat I had had since November. It had lingered so long and the depth of the pain in my throat told me it was serious. I had gone to the hospital several times and had taken antibiotics but nothing had worked. It lingered. It was always there.

And it was deep inside my throat.

One of the things scleroderma affects is the esophagus and the ability to swallow. It had never crossed my mind that this sore throat was from my scleroderma. It could well be due to the ill-health I was experiencing vis-à-vis the pneumonia I had and general fatigue, but I had never associated its direct cause with scleroderma. So when a month and a half had gone by and I had had a few appointments where I was still in a weak state of health, I contacted the Bone Marrow Transplant (BMT) team and asked for an appointment for my sore throat. It scared me that if I were to walk into the treatment and get four days of heavy chemo and then get my stem cell transplant and be in a state of complete vulnerability for a week or so to any infection whatsoever and have zero ability to fight it off due to not having any white blood cells to fight for me, going into it with a sore throat was not a good idea. Especially since this throat I had had for so long.

I had thought it was connected with my pneumonia and couldn’t figure out why it wouldn’t go away.

So I went into the clinic and met with one of the doctors. He didn’t take a liking to me at all. For my part I was still weak and was growing a beard and looked generally unkempt. He on the other hand was clean shaven and Spartan. He became rather suspicious of me, and told me that my sore throat was most likely from my scleroderma. I thought he was wrong. I unwisely mentioned I was having a pain in my chest from the over-revving of my heart from the prednisone I had been taking in high doses (3mg per day) for so long because of the pandemic. When we finished the appointment he said he was going to recommend that I return home and wait to be asked back when the pandemic was over.

But there was something in his demeanour telling me I had been let go from the treatment. That I was too sick to continue with this expensive and robust treatment that would save my life.

So I had to wait all weekend until the team of doctors met on Monday morning to discuss my case. My situation was unique, not only because I suffered from scleroderma and not leukemia like the vast majority of patients in the program, but because of my extreme case of pneumonia that had most likely damaged my lungs. I sensed that I was going to be asked to leave.

And it scared me.

So Saturday night in bed, as I tossed and turned, I forced myself to get up to write an email to Dr. Atkins. I outlined my thoughts on the matter and asked him that if they thought I might be too weak to undergo the treatment that I would prefer to remain in Ottawa to continue with my recovery. I said each day I was getting better and that during the pandemic I could get my health back. I recommended that I get a small dose of chemo once a month until the pandemic was over and the transplant was back on because I had had success with chemo keeping me from becoming super sick.

I was contacted via email that I would get a phone call from Dr. Atkins on Wednesday. I waited and waited until nearly the end of the day so I went out for a walk. I happened to me very cold that day so when I got the call I was cold as hell and out of breath.

“Hello Peter. How are you?”

“A little better than the last time we saw each,” I replied.

“Thank you for your email.” And then he went on to say he agreed with me that the chemo had improved my symptoms of scleroderma and that since I was improving at the apartment that I should continue to live in Ottawa until the pandemic ends.

In the email I had written that I was scared that I would never make it back to Ottawa if I left.

I think Dr. Atkins argued on my behalf to keep me in the program with the other doctors. And because of that he saved my life. And gave me the motivation to show that doctor that Dr. Atkins was right to keep me in the program.

Within a week I had bought a mountain bike and started to take my recovery to the next level.

Chapter 13

APRIL AND MAY

April and May brought an unusually warm spring that enabled me to extend my walks farther into the nicer neighbourhoods in Ottawa. The risk was catching a cold. But I wrapped myself in two scarves and had ditched the oxygen tank in late February and had pushed myself until I was out of breath. I would walk at least once a day unless it was colder than minus 15 Celsius.

In March I had extended my walks from five minutes down the street breathing from an oxygen tank to 20 minutes without an oxygen tank, but in April I had extended it to 45 minute and then an hour, but that was really pushing it. My heart raced and at night felt like it might explode. I feared the potential damage I might be doing to my heart but was so determined to get my lungs working well enough that I kept at it. But the problem became something else. Each day I could really only walk the streets that surrounded the apartment and I was fast becoming bored with the same streets and same beautiful houses. So when I came across a few bike shops on Wellington Street I inquired about buying a mountain bike. Since it was lockdown they said I could only order a bike from their website so that’s exactly what I did. I could hardly wait until it arrived the following week, impatient like a little kid!

But when I did arrive it was a big step up from walking.

At first I have to admit it was scary. The bike was bigger than the one I had at home and required more upper body arm strength to negotiate it. But it gave me that thrill of exploration that propelled me to farther routes and new nooks and crannies in Ottawa during my journey of discovery. It ended up being the perfect physical therapy vehicle for me because it allowed me to see new vistas and at the same time improve my cardiovascular abilities. I used Google Earth to map out different areas of the city to explore. And since it was in lockdown the streets were empty! Day after day I rode my Giant mountain bike into all sorts of beautiful enclaves Ottawa had to offer, including the Rideau Canal and Ottawa River bike trails. Some days I over did it but I knew I had cycled longer than before and that I was improving. The very last day of cycling I biked from the apartment down the Rideau Canal to where it met the mighty Ottawa River right below Canada’s parliament buildings and Supreme Court and then back up Parkdale Avenue to my apartment. A two-hour bike ride but it was more than that. I had cycled right around the heart of Ottawa after looking at it on Google Earth for four months. From the first five-minute walk down the street and back breathing a big oxygen tank to this, psychologically it gave me the confidence to tackle this treatment. 

When I had an e-interview with Dr. Atkins in May he commented on how “hardy” I looked. I did. I was beginning to feel hardy. And I had recalled our previous medical appointment when he said I had looked stronger. He said to me that he doubted I would have survived the treatment if I had undergone it beginning in February.

One has to have some strong stuff to endure this treatment let alone survive it.

Chapter 14

JUNE 4th – THURSDAY

The first day back at the hospital was fairly routine. I was excited because the doctors had chosen to keep me in the treatment despite my frail health and high risk of dying. Today was the beginning of my intense chemo that would destroy my immune system. My temporary bed that was supposed to last for an hour ended up lasting almost all day. I had assumed that things with moving to my new room would take longer than expected so I had unpacked a bit and made myself comfy with my laptop and prepared for my chemo in earnest. But it was the insertion of the catheter that had me pacing. I had had one before during the time I had over-hydrated from my first chemo in January but I was so out of it I didn’t have any idea of how uncomfortable it was to insert! Then it happened. The nurse, who I had surmised lacked finesse and grace, walked into the room and announced that she was ready to insert the catheter into my penis. She lay sanitized towels and other equipment I chose not to look at by my feet as she lay me back on the bed. She then called in her assistant from the hallway to help her.

This was no time to be embarrassed!

She asked me to pull down my hospital pants to expose my wang. I did just that. And then lied back.

“This might hurt a bit,” she said. She took some lubricant and wet the tip and then proceeded to shove a long tube into the tip of my penis, pause, and then shove it right down the length of it. There are no words for this feeling – the physical sensation and the utter indignation of it. Still painful, she then took another bigger tube and attached it to the smaller tube that was inside the shaft and attached it. But there was a strange feeling about it. It had propped my prostate to be open, like that of opening a tap. It would let all the urine from my bladder out to drain into a bag. This was because the chemo and other chemicals could literally burn a hole in your bladder. I had actually had second thoughts about having a catheter (because it was voluntary) and had expressed to the nurse that I was thinking I would opt for not having a catheter. That was when she sat back and told me of the potential problems involving the bladder. Her tone alone told me it wasn’t a good idea to try to take a leak every hour for five days.

So I had gone ahead with it.

For the first few hours it felt terrible – like a piercing wound in the middle of one’s number, but slowly its unnatural presence soon adapted itself to something of a trusted brother who held the tap open despite my dislike.

And I would soon come to love this thing as the automatic drip that would make chemo durable.

Then came the chemo. It was all very official how they had to have another nurse sign off on the bag by repeating each thing written on the bag, such as name of the bag: cyclophosphamide, and then the name of this and that, date, expiry date and patient’s name. Then they asked me to verify that I was that person. And then they hooked me to the IV.

Now my previous time getting chemo in January and then once in March and April and May were done through a line into my vein in my arm. It was a normal practice and was a little uncomfortable when they stabbed my vein with the needle. However, two days previous I had been asked to come into the hospital to get a PICC line. I hadn’t known precisely what this was. I had assumed it was just like the other lines I had had before.

I was wrong.

A few days before I had walked into the room and was freaked out how serious an operation it was to insert a 45cm long line into my artery in my upper arm. I’m still not sure if it was inserted into my vein or artery but it led directly to my heart via the superior vena.

It was a mini operation.

She spread out sanitized cloth and closed the curtains from the other nurses in the room and she gave me a needle for the pain, to sort of take away the trauma of it. In fact in retrospect that needle was the most painful part of the procedure. It was given to me right in the middle of my right bicep, the preferred vein and arm. She then waited until she had taken out the line that was to snake down my vein to the ventricle beside my heart. Inserting this baby was painful but not as much as I thought. Believe it or not there are no nerves along the artery so when she was snaking it down the corridor into my heart I could only feel her hand movements at the entry point.

It was just freaking weird!

Once done she taped it in place, put an elastic cotton fishnet around it (to let it breathe) and then I went for an x-ray “to make sure it didn’t take the path of least resistance and snaked up my neck.”

The x-ray confirmed that my nurse had snaked well.

I thanked her for using so much finesse and confessed I didn’t know it was such a serious process.

Now, two days later, the chemo was simply hooked into one of the two portals that dangled from my arm. It was both painless and blood-free and would prove to be a crucial factor in enduring my treatment.

I came to love my PICC line for the pain it saved me from constant pricking of needles.

The first use of my PICC line was relatively benign. There was no flush within the vein that one can feel when something in put in or taken out of the vein. Because the line reached so deep and from such a large well of active blood, there was no discomfort. And so this is how the chemo dripped into me for two hours each day for four days.

People make out that “chemo” is a big thing. It is but it’s not the chemo. It’s the ATG that they gave me after each bag of chemo. This ATG is a cocktail of chemicals that regulate everything about the killer chemo. The first day I wasn’t given it. I only had the chemo. However on the second day after my bag of chemo I was given the ATG that drips for 20 hours and it caused me to feel harsh. My eyes closed to a half stupor and my brain went into a haze. At night I sweated to the point that I became cold from the air-conditioning, which caused me to shiver. I simply turned on the light and opened my laptop to pass the time but the headache I had made it impossible. The nurse came in and suggested I take a pain med for my headache, to which I replied “Will it affect my chemo?”

“No,” she replied.

So I took a tramadol and it made things better. After an hour of trying to dry off I fell into a good, heavy sleep and woke up four hours later rested.

During chemo they take your vitals every four hours so that it as long as you get for sleep at one go. They take your blood pressure, oxygen levels and temperature.

At that point when the nurse took my vitals she asked if I wanted another tramadol, to which I wisely said yes. This put me into another stupor that took me into a very comfortable sleep into my third day. The dreadful night was over and I was confident for my second last day of chemo.

This day went well, spending most of my day getting the chemo, meeting with my doctor and nurses and washing. I was amazed at my strength as I was taking my third big baggie of chemo with only one more to go, but then I was hooked up to another big baggie of ATG after my chemo bag. And my feeling of pride and strength went out the door. I went to sleep early and then, just like the night before, hit a point when I broke out in a sweat and became bone cold in the cool air-conditioned room. I shivered and decided it was better to turn on the light and stare at the computer to pass the time. My nurse came into the room and, trained as she was, asked me how it was doing.

“I’m sweating” She took my vitals and was relieved I didn’t have a temperature and then suggested I take a tramadol, which I felt I didn’t need but it would enable me to regain some sleep comfortably. So I went for it.

And it worked.

The other thing worth mentioning about my treatment during this time is the water retention. Though it’s not really water. It’s the bags of liquid chemicals they pump into your vein. That’s why they weigh you every day.

Normally I weigh 195lbs. It was suggested that I put on a bit of weight to prepare me for my treatment so I obliged and entered the hospital weighing 216 lbs (98kg). The second day of my chemo I weighed 100.6kg. I had gained nearly five pounds in 24 hours! Was my catheter not working? The nurse informed me they were going to give me a medication that would enable to dispel the excess liquid. I woke up the next day – the third day – and in the morning I weighed 97kg. I had pissed out nearly six pounds of urine. This was filled with killed and corrupted white blood cells! The enemy! I felt good seeing that my bladder was protected, the catheter was working and that I was finally expelling the deadly white blood cells that attacked my lungs and joints.

Then once again they weighed me at dinnertime on the third day after another day of chemo and just before my ATG and I weighed 99.8kg. So they gave me more Lasix that could diffuse the chemicals that were wreaking havoc inside me.

Due to the harshness of ATG – the cocktail that sort of serves as the clean-up crew within ones network of veins – they give you a steroid chaser: a small baggie of steroids to calm and suppress the trauma of the ATG to your system. This is a small hit – only 15 minute on the drip but it goes to show you the power of the ATG.

Once the chemo is done, the ATG stops.

One effect I felt almost immediately was my lungs. I felt I could breathe better. And for someone who has been feeling restrained and restricted breathing as if my lungs were wrapped in vice grip, it was a truly liberating feeling. But it makes sense. The white blood cells attacking my lung tissue hindering the translation of oxygen into my bloodstream were being killed! Liberation! A revolution! The first day my oxygen levels went from 94% to 95%, and then the next day from 95% to 96%.

This said two things. First, it wasn’t scar tissue that was hurting my lungs and causing me problems from the pneumonia. And two: it said that what was hindering my breathing was inflammation. Dr. Atkins agreed that this was significant when we spoke that day. It gave me great hope that I might regain full usage of my lungs and lead a healthy life after this was done.

Chapter 15

THE LAST DAY OF CHEMO

On the fourth and final day of getting chemo they discovered that my blood sugar levels were high. This was from the amount of steroids they were giving me (and from all the sugary deserts they were serving me that I was obliged to eat because of the need to keep up my weight). So they decreased the amount steroids and they started giving me insulin shots in my left arm. At first I was alarmed but they gave me four tests per day by giving me a pinprick at the end of the finger, and the second reading was significantly higher.

So they simply increased the amount of insulin they gave me.

And the weight. My weight on the second day in the morning was 100.5kg, which was higher than I expected but again they’re pumping me full of liquids all the time – 24 hours per day. Dr. Atkins came in to see me and we had a good chat and he suggested they weigh me at 11:30am, which they did. I weighed 99.9kg. At least it was going down. (The nurse had weighed me as soon as I woke up just after breakfast at 8am). But when they weighed me at the end of the day I weighed 101.5kg.

With a catheter in your penis walking around really isn’t on the list of fun things to do but I forced myself to walk around the room for 20 minutes and felt significant dribbling action into the bag. I think my male nurse Phil was right: I need to walk around to expel the bladder better. I walked around the room before bedtime and then again the next day to make sure the weight did not go up too much and that I’m expending my waste.

And my white blood cell count: on the third day it had gone down from 11.4 on the second day to 5.3 on the third day. With my blood test taken today, I had hoped my white blood cell count would hit the ideal level of zero because that’s when they want to pump in my stem cells. And most importantly, getting rid of all the corrupted white blood cells that are destroying my body is when I can put the good healthy white-blood-cell-producing stem cells in there to reproduce and repopulate.

And another thing: my sore throat. I had felt the pain returning to the back of my throat right before being admitted, so I was scared as hell it was going to wreck my treatment. At night I wrapped a scarf around my neck and wore a hat and even put my hoody on to prevent getting a chill when I slept. But the third night I noticed that the “thickness” I had been feeling at the base deep in my throat had dissipated a little bit. But then on the fourth day the pain in my throat had diminished to almost nothing. Like the swelling in my hands and the capacity of my lungs – the three main areas of my body affected by my scleroderma – had become better. My hands were clearly better after a flare up on the first day. My breathing had improved significantly whereby the first time in perhaps a year I could better catch my breath, but the most surprising was my throat.

When you have scleroderma every time you breathe in for a deep breath the back of your throat clamps shut involuntarily. Now when I took a very deep breath I no longer did that. And again I use the word “thickness” I felt in the back of my throat had gone. It felt normal for the first time in a very very long time.

So that doctor I had seen that day weeks and weeks ago who had recommended I not be allowed to carry out my treatment (and who had spurred me to write the email) had been right: my sore throat was the result of my scleroderma.

I’m sort of glad I hadn’t believed him because that in itself is a very scary thought: the back of your throat slowly constricting you, as well as your lungs, until you could no longer breathe anymore. That would have been my fate without this treatment. Truly humbling.

Chapter 16

REST DAY

After a rather good sleep with vivid, almost disturbing dreams bordering on hallucinations, I woke up feeling rested. The first thing I did was get up for a walk to get my bladder drained because movement helped drainage but I saw that I had pissed three litres of urine overnight! The nurse came in and drained it for me and I walked around and proceeded to refill it.

That Lasix is an effective drug.

The night before I weighed in at 101.9kg, which was still high. Fluid weighs a lot so it makes sense that by pumping three litres into my veins 24-hours a day or more I’m going to fill up. But I still thought it would be lower. I was weighed at 10pm so I proceeded to walk around my small room for thirty minutes and proceeded to immediately urinate. I would walk for five and then stand and piss in a dribble for five and then repeat. It was amazing. And gave me much relief.

My morning weigh-in came in at 99.6kg. Better. As I was still receiving ATG at a high rate. Acceptable as my normal weight was 98kg.

But what was more concerning was my sugar levels. They had spiked from 11.4 to 17. And I didn’t have an order to be given insulin – not until the following morning. So the drainage issue had become more pertinent to minimizing this potential complication.

The morning blood-sugar reading came in at 7.8. Anywhere between 6 and 10 is normal. So I could shelve that as a potential problem. And not have any more insulin shots.

But the best thing about waking up on rest day was how I felt. My throat had improved further. The stricture I had had in my throat was gone. It was like realizing it had been growing worse for years and then one day is gone. I could swallow without pain and when I took a deep breath I no longer swallowed involuntarily. Amazing feeling. And my lungs! I could breathe better. But my lungs felt bruised – I use the word “bruised” because that best describes the pain. But it was a good and scary kind of pain, like when a thorn has been removed from a slivered hand after a long time. I took deep breaths to get the chemo deep into the lung tissue to tear out the bad white blood cells and to try to fully heal the lung tissue that had been affected.

I was definitely on the mend. It felt great to breathe so fully for the first time after so many dark months of hindered breathing.

And tomorrow I was to get my stem cells that would usher in a new era of repair and healing.

But no matter what I thought of my rest day, today was the day I was to get my catheter removed. It was big thing for me because nothing was more intrusive that this. No doubt volunteering for the catheter was a wise move but its insertion was a low point along the way, so removing it was going to revisit that moment of intrusive discomfort.

And it didn’t help when the strap holding the tube to the end of my penis ripped off my leg when I executed my morning bowel movement. Ouch. And danger! The catheter could rip out and it could cause some very serious damage in the internal workings of the appendage.

But in the interim I was happy to hear that my blood work came back and my white blood cell count was at 0.4. And having just come off of cyclophosphamide and ATG I knew that I was still expelling and killing the white blood cells in my body to get that number down to zero for tomorrow’s stem cell transplant.

But at the moment, the nurse told me, I am very susceptible to infections of any kind. “So be careful.”

“I think I’ll just hang out in here,” I said. COVID was now everywhere in the hospital so I was a sitting duck with now virtually no immune system.

A little later in the day I felt like a truck hit me. Having been taking prednisone steroids for more than eight years every single day having suddenly not taking any steroids was a big shock to my body. I couldn’t really do much of anything. They had unhooked me from the IV and I was free of what the nurses called “the Christmas Tree.” My White Blood Cell Count was at 0.2 and my Neutrophils was at 0.1 so I was as vulnerable to infection as I had ever been. The doctors were happy with everything and told me I shouldn’t expect to feel like a million bucks!

At the end of the day my white blood cell count was zero. I had absolutely no defence against anything now. No immune system. Nothing to fight off any type of infection. I was told to be very careful how I wiped my ass and told not to brush my teeth. And I was asked to tell the nurse if I had any diarrhea.

They gave me 50mg of Tramadol and it helped alleviate my headache.

Chapter 17

STEM CELL TRANSPLANT

I couldn’t really say why I was nervous about the transplant. I suppose due to its importance. And its name. Anything with the word “transplant” could make anyone anxious. I was expecting two huge bags of deep burgundy blood but they were two small apple sauce-coloured bags. They mixed each bag with a saline solution at a junction point in the tube and it was pumped into my PICC line.

Immediately I tasted creamed corn at the back of my throat as I had been warned. It was a strange sensation. Very strange.

The stem cells had been delivered from the Canadian Blood Institute down the street and were late but they thawed the bags here in the room and were swiftly pumped into me without any time wasted. Both bags went well. There were no issues.

It was actually all rather anti-climactic.

The nurses came in and said Happy Birthday to me.

Today was Day Zero. It was June 9th, 2020.

It was a straight-forward transfusion but it was an important one. These stem cells that looked like corn oil in a bag were the blood seeds that would grow new white blood cells and replace my old ones over the next two weeks. They gave me four small bags of an all-purpose antibiotic to keep any fevers at bay.

Really for me it was just sit back and rest.

Chapter 18

DAY ONE

Tremendous headache. The tramadol helped. Slept a bit.

Getting the small bags of antibiotics was already routine. But I did have a big Grass-to-fil needle today (that e coli shot that I had self-administered twice a day for ten days in January to get my stem cells out of my bone marrow), the first of perhaps nine or so. This was to encourage the stem cells to burrow back into my bone marrow where they can repopulate. The needle was given within an inch of the belly button as it is the main core in your body with regards to bone marrow, the nurses were saying. I don’t like these needles but the nurses are much better than I was at giving them.

The doctor, who was to visit me every morning during this time, was happy with my progress. No fever. He was watching my weight as there was worry that my lungs could fill with liquid. So far no issues with my lungs.

Blood counts for today: White Blood Cell Count 0.1, and the Neutrophils 0.1.

My weight: 98.8kg.

Chapter 19

DAY TWO

Still with headaches but I am not afraid to take the pain medication Tramadol. One thing was clear from the state of my body: the medicine they were giving me was very serious stuff. I broke out in a skin rash from the freezing agent. I had been warned about this that this was common. So it was no big deal. What became an issue was how my skin reacted to the stem cell transplant under my PICC line. A nurse had changed my dressing after one week, which was two days ago – the day of the transplant. When she put the fishnet elastic bandage over the dressing I felt it was too tight. I said something to the nurse, who assured me it would stretch.

Throughout the night it hurt.

The next day (yesterday) my arm was hurting because the bandage was too tight so I again said something to the nurse. She said I didn’t need to wear it! So I removed it. And we both saw how red the skin had become.

It was like a sunburn.

And it contrasted against the normal skin colour just above it on my shoulder.

When I removed the elastic bandage it was clear my circulation had been constricted. One size does not fit all! My biceps were bigger than a woman of 53! Silly mistake made by the nurse. But man did it feel good to have it off. Pins and needles feeling dominated my arm for the rest of the day and I felt as if there was still some chemo and stem cells in there as I flushed more of those out of my system throughout the night.

One thing I would say to potential patients of a stem cell transplant is to speak up. Nurses make mistakes and some of them can be life-threatening. This simple misjudgment with my elastic bandage could have resulted in serious problems if I hadn’t spoken up.

And not all nurses take a liking to you. My nurse for the day didn’t. Weighing me is one of those important measurements that tell whether I am retaining fluid in my lungs, the greatest risk I was facing. Every morning when the doctor came to see me he checked my weight, so a good nurse weighs me before I eat breakfast and before I have drank a half litre of water. My nurse for the day took a disliking to me. It was because I refused to get any more sugar tests on my fingertips. She clearly thought it was her right to give me these tests. If she had looked back she would have seen that I had had normal sugar levels for the last 24 tests. I only had elevated sugar levels twice because of the masses amount of steroids they gave me many days ago. I had become very worried of getting an infection in any one of my fingertips since I had no white blood cells to protect me!

“You tell Dr. Huebsch then,” she said in a petulant, immature voice.

“Fine.” So when the doctor was here we were talking about something else and she butted in.

“Have you told him yet?”

“Pardon?”

“Have you brought up your sugar test thing yet?” Oh, so I began to explain wouldn’t it be better if they used my daily blood test to measure my blood sugar levels rather than poking my fingertips over and over again. He agreed. And then she raised her voice at him.

“But he had insulin needles. He still needs them.” I had had two and that was a whole week ago during my chemo. And why did she care so much?

Dr. Huebsch looked embarrassed for her, raised his finger and nodded and left by closing the door to speak with her. Must’ve had issues with this one before I thought. Pretty immature on her part. Could get her fired. And could have killed me with her unbending adherence to protocol.

Just thought I would mention this to show that it behooves all patients to keep a critical eye on the care they are receiving from their nurses at all times.

This nurse’s name was Nathalie.

So Nathalie had weighed me just after I had eaten breakfast and drank lots of water – the worst possible time to get weighed. My weight was 99.5kg. Too high. Even I was surprised. I explained to the doctor that I had been weighed just after a large breakfast etc. He frowned.

“Okay, well keep an eye on it then for me will you?”

And so I did. I weighed myself throughout the day. I was 99.1kg at 11am. And then I was 98kg at 4:30pm. The next morning I suggested to my nurse, who was again Nathalie, that I get weighed before breakfast. I weighed in at 97.3kg.

Chapter 20

DAY THREE

My skin rash was still sore and red but it was getting better in spots, which I took as encouraging. My meeting with Dr. Huebsch was good too, with no new issues or problems. He said that if I were a ball I was poised right in the middle of the two uprights.

I liked that. And I liked him. And most importantly trusted him. He became a father figure and the voice of reason in this dangerous time. He was one of the biggies who ran the stem cell transplant program at Ottawa General, as was Dr. Atkins. But it was Dr. Huebsch who checked on me every morning.

Around noon it was time to get my antibiotics. Each bag took precisely 30 minutes. But for some reason Nathalie put it at half the drip speed so it took an hour. When I asked her about it she said she didn’t do anything.

I need to be careful around this person. She was immature and resentful and very dangerous for someone like me who was a sitting duck. Her carelessness kept me on my toes.

I removed my socks because my feet felt a bit puffy and I was shocked to see that they were ballooned out! I laid back and raised them onto pillows and took a nap.

At the four o’clock reading of my vitals my oxygen levels measured at 97% – the highest in six months. My weight was 95.9kg. And my rashes were subsiding, especially after removing the plastic ID bracelet the hospital had given to me.

For the rest of the day I was beginning to feel almost normal.

Chapter 21

DAY FOUR

When I woke up I was in substantial pain. The burns on my skin screamed with redness and what once looked like a rash now appeared to be something more serious. Fortunately it was Saturday and this meant Dr. Atkins was going to pop in for a visit. When he did he noticed the redness on my skin and immediately knew what it was.

“A rash is common as you know from the stem cell transplant but this…” he said, examining my arm, “I think is cellulitis. I was going to switch your antibiotic today anyway so we’ll switch it with something that will take care of that redness.”

Then he noticed the swelling in my feet.

“Is this painful?”

“No. Just a bit puffy.” He examined them and thought I should go for an ultrasound to make sure I didn’t have a blood clot. I was pretty sure I didn’t have a blood clot because they’re very painful and there was no pain in my legs.

“Just to rule it out.”

He expressed how happy he was that I was cruising through the stem cell transplant without any major issues, namely with my lungs. This gave me a great sense of pride. I was beginning to see how he had fought the other doctors to keep me in the program after my bout with pneumonia, the other doctors thinking I was too great a risk. He knew I was a strong guy and wanted to use me to show the others the effectiveness of how well designed the stem cell transplant was, even to the sickest patients.

I didn’t mind. Without the treatment I would be dead in six months.

After he left the nurse came in and gave me my new antibiotics. It took a half hour and as soon as it was done I was asleep. I slept deeply and soundly like I hadn’t slept in a long time. Then a little later in the day I was given another new, second antibiotic that took an hour and a half. Same thing happened: I immediately feel asleep into a deep slumber. My instinct told me that it was a reaction to having been given the proper medication for my skin. This was repeated twice more throughout the day, each time feeling like my skin rash/cellulitis was being tended to finally.

I was also given platelets. This is a transfusion but rather than blood it was orange liquid. It was normal procedure to get platelets every few days beginning around day four. The good thing was this was in preparation for when my white blood cells were to reproduce, or at least that’s how I looked at it. So it gave me a sense of accomplishing something: that time was indeed passing and that I was getting close to my goal of nine days.

My weight was 95.5kg.

Because I hadn’t slept very well the night before and because I was now getting the right tailored antibiotics I needed to get rid of my cellulitis, I was sleepy but the nurse suggested I might want a sleeping pill, which I decided to take. From midnight to five in the morning I slept soundly, not moving an inch. It was the first solid sleep I had had since arriving at the hospital. Since the nurses took my vitals every four hours around the clock, the nurse was kind enough to let me sleep an extra hour. Very cool. Some nurses were better than others.

Chapter 22

DAY FIVE

I woke up still rather sleepy but once breakfast arrived my appetite was strong and with a cup of coffee, felt energized. My arms were still red but the intensity of the pain had diminished. Clearly I was mending. Even the headache that had hampered my stay was not as bad as it had been before. When I got out of bed I realized that my entire body hurt. When I opened my computer I was still too sleepy to read so I went back to sleep and continued to sleep right up to when Dr. Atkins came for his visit.

I told him that the pain had subsided quite a bit and that the antibiotics seemed to be working. He checked my arms and then again asked me about my swollen ankles. I told him they drained significantly when I elevated them.

“Good.” He said again he was happy with how I was doing and that Dr. Huebsch would be back for the week. I thanked him and he was off.

I had been told by one of my nurses that another patient had the same cellulitis as me.

I was to get more platelets today as well as get the ultrasound for my right leg.

My weight came in at 95.6kg. My white blood cell count was still zero.

When I had my second platelets transfusion I felt the rash on my skin begin to burn. And then looking at my arm I saw welts on my skin so I notified the nurse and she administered Benadryl to me, which is an antihistamine. It made me sleepy and I had a nap but almost immediately the hives went away and the redness in my skin waned. But man was it scary! It was a sober reminder at how sudden things can change during this treatment. And a reminder how serious it was every time I was given anything via IV into my heart cavity.

I spent the afternoon napping because the amount of Benadryl they gave to me was a lot.

Chapter 23

DAY SIX

I woke up today refreshed after a pretty decent sleep. I know the rash on my skin was getting better because the redness was going away so as long as I keep getting the targeted antibiotics then I was moving in the right direction.

Dr. Huebsch reiterated to me today that I was meeting all expectations and that I should feel good about how I was progressing. And that my rash was precisely that: a rash and not celluloses. I must say he’s a good doctor because he was focusing on what was good rather than on small petty things. The nurses can sound the alarm if something doesn’t read the way they want. They do not have the insight to keep focus on the important things, so it’s a constant struggle for me to ignore their hysteria and just focus on what is important. For example I had one nurse who was always freaked out whenever she took my blood-oxygen levels. Sometimes they were 92 percent, and sometimes they were 88 percent. I learned that it was best to give me the test while not taking my blood pressure. But she would always be in such a rush that she did all three tests at the same time (oxygen levels, blood pressure and heart rate). And every time she would threaten me with putting me on oxygen – with an oxygen mask – but every time I would say to take my readings AFTER taking my blood pressure and every time they rose to acceptable levels. She simply could not understand that taking blood pressure decreased my ability to breathe.

I was also given more platelets. This time they gave me the Benadryl first via IV to alleviate the possible allergic reaction. When I asked them why I hadn’t had an allergic reaction when I first had the platelets transfusion they shrugged their shoulders and said it could have been something in the blood donor’s blood, such as an antibody. Sounded scary as hell to me – this sort of wonton cavalier attitude to let allergic reactions happen to you because of something in the blood donor’s blood. Like Russian roulette with your health.

My weight came in at 94.8kg today.

First thing in the morning I was taken down to the second floor to have an ultrasound on my right leg. The swelling in my right foot/ankle was concern enough for Dr. Atkins to order an ultrasound to rule out a blood clot. I knew I didn’t have a blood clot because I didn’t have any pain. But I went anyway, amazed in this COVID-19 time in the world that they would subject me to so much exposure. I came into contact with many people and even at one point was lying beside an elderly man with a cough.

I had the ultrasound and then was returned to Ward Five that is cut off from everything. I was furious with this exposure at the potential peril of my life. Should I have spoken up? But it was Dr. Atkins – my trusted doctor and saviour.

Despite the issue with my allergic reaction to the platelets transfusion, I felt quite strong today. I had energy, which suggested to me that my stem cells had returned home and were taking healthy root where they will give my immune system strength and me new life. Knowing that with each passing day I was moving closer to that time when I should be healing myself with my own white blood cells and removing me from this phase of dangerous stasis gave me hope and strength. I inched closer to witnessing this miracle cure working in real life.

It’s a big change in one’s life when one is told they have a fatal disease with no cure to seven years later being told they might be a cure “with stem cell therapy.” In my situation the medications I was taking every day would have eventually killed me from toxicity (Likely in the liver) so this treatment was truly saving my life. This experience was a turning point in my life. When the nurses and doctors refer to the stem cell transplant as “Day 0” they mean it. It is a new birthday. It is the first day of the rest of your life with your new immune system, an immune system that is not corrupted and that will not attack you every minute of every hour you are alive. It is a brand new immune system, one that will be strong and that will protect you from all that is harmful to you. It is a new armor that will keep you safe for as long as you live. No more will your most ardent defence force turn rogue and treasonous and attack you when you are not looking. There will be no more betrayal and no more underhanded attacks.

Indeed it was a new beginning. And June 9, 220 was my new birthday.

Chapter 24

DAY SEVEN

One week! Done! No major issues so far.

But that’s not what I thought this morning when I woke up.

When I woke up I thought I had a fever. I was hot and wasn’t too wrapped up in blankets. I had even sheared off my hair the day before because it was coming out in clumps. Chunks of my hair began to appear on my bed and having once gone through the hair loss from one-quarter of the chemo I had just gone through, I knew I would be losing all my hair.

Shearing it off was neater and cleaner and just plain wise.

So when I woke up I felt hot. With my exposed scalp I should have been feeling cooler, not hotter. But then I remembered my visit to the second floor. I froze with fear. Had I contracted COVID-19 yesterday? As I lay there I felt totally helpless and found myself praying to God. If I had the virus I was dead. I had nothing to fight it off. Everything I had worked for would be over. Eventually I resigned myself to my fate and faced the very real prospect of experiencing a dreadful day.

When the nurse arrived to take blood and give me my antibiotics and take my vitals, I was nervous. But when she read my temperature I was in shock. It was 37 degrees. A bit high but not a fever. Glorious! I silently vowed to be an even better patient. I was elated.

The other development from yesterday was the blood in my nose. I had been asked by the nurse to report it if I had any blood in my urine or stool or mucus from my nose. When I was shaving my head I wiped my nose on a white towel and noticed the faintest red colour. Alarmed I exited the bathroom and then wiped my nose in a clean tissue, only to see the slightest watered-down red colour. It was blood but it was so feint was it worth mentioning? I was aware of how the nurses can overreact to things and this might be one of those times. But as I lay on my bed throughout the night my imagination began to take over. The biggest worry the doctors had was that my lungs would fill up with liquid. This was why I was religiously taking my weight measurements despite the nurses not insisting. Before I shut off the light for the night I weighed myself and found that I had gained a half kilo, which sent me into a panic.

Could my lungs be filling with blood?

Is that where the blood in my nose had come from?

Is that why I was heavier?

But why would it happen now at Day 7?

And so this was how I spent the night: in worry. So when I woke up hot and thinking I had a fever, I was sure something major was happening.

But my oxygen levels came in normal and my blood pressure and heart rate all normal and my temperature was good.

Each morning the nurse arrived and went over the day’s agenda with you and wrote down your latest blood counts. For today I was to have another platelets transfusion. My platelets were up, which was a relief. This was all normal. And the other thing on the list today was me getting an infusion of globulin. This was part of the protocol, but more importantly it was to give me some white blood cells to help jump start the production of my own.

This was good news.

This was the first time I was dipping my toe into the white blood cell waters post stem cell transplant.

I was also getting my PICC dressing changed. This happened once a week.

My weight came in today at 94.3kg. I was relieved at this weight more than anything else because it told me that my lungs were not filling with blood. And so far today there had been no blood in my nasal mucus. I would keep an eye on that. If it happened a second time I would tell the nurses.

Saw Dr. Huebsch this morning and he was again happy with how things were progressing. He said it was Day 7 that was the day when most bad things happened, such as mouth sores or bowel infections. He agreed with me that my skin rash was getting better and that it wasn’t that important in comparison to the major things that he was keeping an eye on.

“So how was your day? He asked.

“Good. Just another boring day,” I replied.

“Good,” he said. “Boring is good. So have another boring day!” he said as he left.

It was amazing how his words elevated my spirit. His wisdom and knowledge instilled confidence in me and made me want to be a good patient. There was a lot on my agenda for today so I hope it all went smoothly.

And it did! The entire day was spent with transfusions. The IVIG transfusion was a biggie in the protocol as it introduces antibodies into my system that will help my stem cells produce white blood cells. And it was the first piece of my new immune system. The antibodies are taken from blood transfusions and my batch came from Saskatchewan. Good farmer stock capable of withstanding cold winters! But Katie my nurse was more than overzealous and proceeded to take my vitals every 15 minutes.

I don’t know why she gets so zealous.

But after my scare this morning I remained stoic throughout the day. I had another platelets transfusion as well as my two doses of antibiotics four times a day.

All I can say is thank God for this PICC line.

But even that was compromised today. Katie, frazzled and incompetent, did a terrible job cleaning my PICC line dressing, which needed to be cleaned once every week. She pulled part of it out and it’s bleeding and it hurts.

I just hope it’s not going to become infected.

That nurse was a danger to all patients coming through this program.

But no matter what immaturity or incompetence she threw at me, I weathered the storm.

For the first time I felt like I have rounded the corner and my immune system could now begin to work independently from all the transfusions and manufactured drug systems being pushed into me. The holding pattern was now coming to an end and the beginning of a new era was about to begin.

Chapter 25

DAY EIGHT

Woke up feeling refreshed. Energy levels were higher and the skin pain from my rash was almost non-existent now. The redness of the rash was a fine pink hue now. The antibiotics were working.

Just saw Dr. Huebsch and he was very happy with how things were going. My blood work showed that my white blood cell count has gone up! As well as my neutrophils! The treatment was working! It means I was beginning to heal on my own! I had been told my white blood cell count could begin to increase on Day nine so this was a day early! Even the nurse asked me a question about my stem cell collection. She asked me “How many days did it take for you to have your stem cells collected?” I answered her one day, eight hours of sitting still.

“Ah, that explains it then. Why you’re recovering so well.”

Dr. Huebsch even said that I could be “going home” on the 28th if things continue as they were. That was next Friday. That was in nine days!

If my white blood cells were reproducing now then with each passing hour then I was now growing stronger. How cool was that?

I was finally exiting that odd limbo phase of existing without an immune system or any antibodies totally susceptible to infection and fever.

Dr. Huebsch said that as my white blood cell count goes up, the transfusions and antibiotics and whatnot I was now getting will begin to stop. Amazing.

My weight today was 94.3kg. The same as yesterday. I’m eating well. The meals are good. I have started to ask for Boost – a milkshake-like multivitamin because I was worried my system wasn’t getting all the necessary vitamins and minerals from my diet of only hospital meals. This I think was a good idea. I can feel the energy levels are more vital and I have more vigor. And I’m even sleeping better – less fitfully.

And my biggest concern – the mild pink mucous coming from my nose that one time two days ago – has not returned. It was true there was some dried red blood in the thicker aspects of blowing my nose yesterday morning as well as a tiny bit this morning, but it wasn’t anything to worry about. It showed a bleed a few days ago but nothing since. And yesterday was the granddaddy of days with the IVIG and the platelets and the potassium and the PICC dressing change. It was the most serious day and for that to have been curtailed for some mild bleeding in the nose would have been a tragedy.

Getting the antibodies infused yesterday I think was a turning point.

So now I was just trying to get through each day without any issues. I was being super careful and super guarded against the bad nurses on rotation – the type of nurse who has a fit if they hear you cough.

The most important thing was that my lungs were clear and that I didn’t have a fever. My skin rash was slowing fading away and would soon be gone because my white blood cells will take care of it.

I felt like I was finally, truly on the mend.

Chapter 26

DAY NINE

Late last night I experienced severe bone pain in my pelvis and lower back – a deep menacing pain that hit me in waves, hour after hour. I knew my stem cells were producing white blood cells because I had read the literature and knew what to look for. I was given some pain medication but wasn’t able to get to sleep until 2:30am. In the back of my mind I knew the pain was a good pain and that it should reflect in my blood counts in the morning, so when my blood work came back and the nurse wrote it on the white board on the front wall, I was ecstatic. My white blood cells were 2.3, up from 0.2 the day before. And my platelets were up and my neutrophils were up to 2.14.

All this was good news.

When Dr. Huebsch found out he ordered another blood test to confirm the large jump. These confirmed the results. In fact it showed my white blood cell count was now 3.2.

“You are looking at going home on Monday young sir,” he said. At first I had to look at him in the eye to see if he was joking. “And there is no more need for you to have any more platelets or antibiotics. Those have ended today.”

Rachelle, the nurse, said: “You’re now off the IV.”

“You have exceeded expectations.”

His wisdom told me that everything revolved around the white blood cell count because this was what would heal me on my own. It was my new immune system and proof the treatment had worked.

My white blood cells will heal the rash on my skin and get rid of my scleroderma symptoms. In fact yesterday afternoon I had done a mini inventory of my old scleroderma symptoms and was shocked to see that all three biggies were better. The pain in the back of my throat and the ache associated with losing control of my esophageal musculature had been replaced with a stronger throat and no more discomfort. My left hand now operated almost normally. There was no more stiffness or swelling. My hand even looked normal. My right hand was still stiff and still a bit swollen but I was confident it too would return to normal.

The hardness of my skin had become softer, and most importantly my lungs felt better. I could breathe deeper. I no longer gasped involuntarily for breath out of the blue. My esophagus no longer contracted making me swallow beyond my control. My lungs had been coughing up debris but in a good way, as if the new white blood cells were cleaning up the scar tissue. My new white blood cells were like rays of shining white light healing every corner of my body after being ravaged for seven years by corrupted white blood cells.

It was a new beginning and it was real. This was the result I had hoped for but hadn’t let myself experience for fear of not reaching it. But now I was in shock and stunned by the prompt results. I was really happy for Dr. Atkins because he was the one who stood by me when the others thought I was too much of a risk for the program and a potential threat to their funding.

I owe my life to Dr. Harold Atkins.

PART TWO – HEALING

Chapter 27

DAY TEN

I was bearing witness to the success of this treatment for scleroderma sufferers. It was a long way to have gone from being told I have a fatal disease that had no cure to this morning when I could feel the magic and power of clean, healthy white blood cells immerse and cover my injured body after eight years of having the illness. Even having been in stasis for a week where nothing went on within my body other than being vulnerable to infection and fever and being helpless and defenceless against any and all attackers, what I was feeling now, in the early morning hours of Day Ten needs to be recorded.

Firstly my neck. I have been coughing stuff up from my lungs and have felt my neck muscles are sore. I have never had an issue with my neck but I was having an issue with my esophageal muscles that control the mechanics of my throat. These muscles had been compromised by my corrupted white blood cells and had caused me to swallow involuntarily. It is one of the main symptoms of scleroderma and one I was never comfortable discussing. And now I could feel the control returning to my throat, and I could feel the musculature healing. There must be an instinct man has that innately knows when something within their body is healing, and that is what I’m feeling in my esophagus and neck area. It is like a warm glow.

The other area of obvious healing is my lungs. I am witnessing healthy white blood cells visit my injured lungs for the first time in eight years. Ravaged and scarred, they are now being pampered by healthy white blood cells, eager to put things right. My breathing capacity has increased. And the junk I am coughing up is likely dispelled dead cells. I am witnessing the cleansing of my lungs and it’s a glorious feeling. I’m drinking more water but am following my thirst and helping with this amazing journey of recovery. And my lungs themselves are sore, like a bruise. It’s the feeling of being healed. And I know from the x-rays taken over the years that they hurt in exactly the places where the pneumonia hit.

It’s 4:30 in the morning just after the nurse has taken my blood work for the day and I feel the need to record this joy I’m experiencing.

And my hands. My left hand has zero swelling and is no longer stiff in anyway. It’s back to normal after eight years of being almost like a claw!

My skin I can pinch for the first time in years. My skin is no longer tough and hard but rather soft and normal looking. My skin rash is fainter today and my aches and pains have seemed to disappear overnight.

The transformation is truly astonishing.

All eyes are on my lungs. It’s why I was admitted into this program I think, as the doctors want to see the extent of the healing within the lungs. I will be having lungs tests by a professional at Mount Sinai in Toronto months after my discharge from the hospital but I can already tell the positive changes going on within them. Each breath is freer. Each breath is easier. Each breath brings me closer to total health.

It was proof when the blood test results arrived for the day. My White Blood Cell count (WBC) came in at 5.7, significantly increased from yesterday’s 2.3. And my platelets were 20. And my neutrophils count is 3.5, also up.

My weight came in at 93.6kg. It’s good because I was overweight coming into the treatment on purpose so the weight I’ve shed is welcome. I’ve dropped a solid ten pounds. During the next phase of my recovery I plan on walking and riding to shed even more so I can begin my new life with my weight at 190lbs.

I have a particularly harsh headache this morning, a rather different kind of pain to my headaches ever since my second day of chemo. And I think it’s my white blood cells healing the damage done to my brain from the chemo. I haven’t read much about this aspect of chemo, but I have heard of the expression ‘chemo brain.’ I can only wonder what damage chemo does to the brain but am hopeful that this newer, stranger pain is my body healing the damage so my headaches will soon become something of the past.

I can’t even see my skin rash anymore. Again my new white blood cells, as new and healthy and robust as they are, are proving to be magic in the race to erase the many injuries and ailments I’ve had from before and during my treatment.

The power of healing is God incarnate in the human body.

I will spend the day napping and listening to my body as it is healed each hour more and more by the hand of my new white blood cells created by my stem cells that were harvested in January. Amazing.

Chapter 28

DAY ELEVEN

Slept well – all the way through. The amount of sleep has been noticeably higher since my white blood cell count has been going up. Clearly it’s healing my battered body.

My blood work just came in. My WBC is 7.8. My HGB is 95 and my platelets is 31. And my neutrophils count is 3.92. These are the frontline soldiers that attack infections or intruders into your body. One’s first responders.

The nurse is happy with the numbers, as so am I.

I coughed up some gunk earlier this morning after my bloodwork was taken and it tasted sick – like old cells that needed to be dispelled out of my lung tissue. Just one cough right from the base of my lungs after lying on my back all night. It was a good cough.

Chapter 29

DAY TWELVE

Sleep up to this point had been in spurts and fitful. Now, last night and all this morning has been sound and thorough. Before I was full of aches and pains throughout my body from the arthritis and from skin rashes but now my body is without pain. It’s as if as balm has been painted across all four corners of my body to removed deep-seated and lingering pains that had been with me for eight years. I am witnessing and indeed experiencing the magic of how the human body can heal and repair itself after not having that ability for eight years. My body is busy commanding my white blood cells to go to all the nooks and crannies in my system to heal all the bruises and injuries at the hands of my scleroderma.

It’s Day Twelve and my WBC began to increase on Day Eight. I had the deep bone-marrow pains on the night of Day Eight so really it was Day Nine that it started, exactly what Dr. Atkins had said to me if all went according to plan. Day Nine was the day one should begin to heal. In my case that’s what has happened. But to quantify how much pain has been quelled in these past three days would be a challenge even for the best writer of note. The biggest thing that has changed is the swelling in my hands and therefore in my knees and ankles too. My hands are normal now. Before there was always swelling and stiffness in every finger and throughout the hand. And with the swelling there was a silent pain that was there whenever I used my hands beyond the boundaries of the stiffness. It is crippling after some years but one learns to overcome the pain and make the best of the situation and endure the pain. When this is removed magically, it is a fantastic feeling just to walk.

As I have noted earlier, my involuntary swallowing has ceased. I hated whenever this happened because it scared me and showed that I was losing control of my body. Now I can take a deep breath and not have my throat constrict. And the muscle pain throughout my throat on Day Ten was revealing insofar as how deeply my scleroderma had taken hold of my esophagus.

The hardness of my skin is gone. For a very long time (years) I couldn’t pinch my skin. It was too tight. Collagen had made my skin hard. That’s what scleroderma means: hardening of the skin. Upon analysis by Dr. Atkins with some of his students doctors before the treatment he noted that most of my body was as hard as it could be, rated a three out of three. Now I can pinch my skin easily wherever on my body. And what comes with this is less skin restriction when I move. Perhaps tough to imagine, but the tightness of my skin had hindered my movement because my skin was wrapped so tightly around my bones and joints. This is what caused the stiffness, this and the swelling and the pain. And this tight skin was throughout my body, particularly strong around my stomach and face and neck. I would yawn and it would feel like my skin would rip in my face. I could feel ripples below my skin across my stomach and neck and arms but these are now gone – or much softer. My stomach was hard but now there are area of softness, not completely soft yet but getting there quickly.

And the biggest thing and the one thing the doctors are keenest to measure are my lungs. Everyone wants to see how much this treatment gets my lungs back to where they were before the scleroderma made its way into my lungs. Will they stay the same but be safe from further decay? Will they heal a little bit? A lot? Completely? I will go for a professional lung test six months from now in Toronto at Mount Sinai and this data will be off great use for the medical team here in Ottawa.

And I will be the subject of that information. A willing guinea pig.

I will continue to do my best with my recovery and do what needs to be done in order to facilitate a complete recovery. But during these first three of four days I’m thrilled with how I am experiencing an exodus from my scleroderma symptoms as well as the knowledge that my life expectancy is now back to normal – or to where it was before I was diagnosed with scleroderma.

My data for today are as follows: WBC: 8.6. Platelets: 59. And HGB: 96. And my front-line infection-fighting neutrophils are 4.3.

The nurse said the normal range of one’s white blood cells (WBC) is from 3.5 to 10.5, so with me being at 8.6 it’s looking like my body has responded well to producing its own white blood cells. And it’s also a good thing that my neutrophils are significantly up as well. Getting stronger!

My weight came in at 92kg.

And my typing is easier today because my hands have lost their stiffness. Incredible.

I have Phil the nurse today, eager and helpful and he offered to assist me to walk the hallway for some exercise but I refused because everything here at the hospital is scary to me during this COVID-19 outbreak. I will again walk around here inside my single room, but it is a reminder of how dangerous it still is for me here at the hospital. I would definitely be more comfortable back at the apartment in Parkdale than here at Ottawa General. I would prefer to play it safe walking around the leafy neighbourhoods near the apartment rather than here in Ward Five at the hospital.

“Your stem cells have found their home and reproduced nicely,” said the doctor on call for today. “We call it engrafting.”

“That’s exactly what they’ve done,” I replied. “Engrafted.”

She said my new immune system if still finding its legs and needs time to strengthen. Right now it’s going all over the place putting out long-simmering fires that needed the balm of white blood cells and neutrophils but were denied that from my scleroderma. She said for me to keep it simple and ease into your exercises and eat well and sleep – keep to the basics to nurture your new immune system so it can grow into something strong and resistant.

I have a feeling I will spend the rest of my life being careful and protecting and nurturing my immune system into an alley that can help save me from the army of viruses and infections out there in the world. I have a feeling that I prefer to have an immune system that helps me rather than an immune system that attacks me.

Chapter 30

DAY THIRTEEN: DISCHARGE

I was discharged from the hospital today.

I woke up with a very sore tongue and thought there was a chance that I would not leave the hospital. I was afraid that an infection had taken over my tongue and it would swell up and I would need to have a tube inserted down my throat to eat. For some reason I had sores all over the underpart of my tongue. I thought it might be because of all the sugar in the hospital meals. I was scared and it sort of ruined my big day of leaving the hospital a week early.

But I also think it kept me honest – fully in the knowing of all the perils that still surrounded me in my still precarious state. I was very careful in everything I did. And there was a lot to do.

I had my PICC dressing changed, and the nurse did an excellent job, especially compared to the last PICC dressing change. I felt much better because now that I was going to be on my own having a PICC dressing with the bandages firm and sticking on my skin rather than half stuck and open to infection, it was a great relief.

When Dr. Huebsch came in to see me I thanked him for everything. He found me walking around the room so I sat in the chair and told him how much I appreciated his guidance and care. I started to cry but kept talking, ignoring my tears. He let me speak and it was heartfelt. He knew how crucial he was in my recovery during a time I had zero immunity. He knew that we had excellent chemistry and that we spoke the same language of muted hope and understatement. I told him when he said “boring is good,” that it helped me get through the days and be stoic. I told him he was a saviour and that he had saved my life. He nodded and told me I had done well and then left. I sat there for a long while so overwhelmed with gratitude it was unreal.

And then I had a three-hour IVIG infusion. This was me getting antibodies. I asked the nurse about it and she laughed when I said wasn’t it like cheating a bit – getting someone else’s antibodies that took a lifetime to develop. I have a new immune system and I’m getting all these antibodies just depositing into my bloodstream. She said that was exactly what it was like and that I was fortunate that medicine had progressed so much that this was how it was done!

I saw Dr. Atkins and he said he was very relieved and happy to see me leave early. He had feared I would have serious complications with my lungs and was sincerely happy to see me so healthy at this stage of the treatment. I told him about my tongue and he dismissed it, which calmed me down. There would be no feeding tubes required. He said my white blood cell count was high enough to see me through to full health as long as I rest and take it easy at the apartment. He would set up a weekly appointment at the clinic at Module L at the hospital so I could get an IVIG infusion once per week two more times. And he wanted me to have an x-ray of my lungs to see when I could taper off my prednisone medication. We both agreed that was a good thing.

The nurse was there in the room so I didn’t get a chance to really speak my mind and thank him and tell him how much gratitude I have for everything he has done, but I’m sure I will see him during the clinic visits.

I had arrived in the hospital June 4th and it was now June 22nd. I had been lying in a hospital bed for 18 days. I was weak. I had tried to walk around my room as much as I could but my ankles had been so swollen it was hard and painful to do too much. So my worry was how physically demanding the day was going to be. I had never felt so weak. My blood count were far below normal so it was like my blood was watered down. Like blood light. Diet blood. Watered down fuel. I was very careful when I packed. And when the time finally came I was careful to ask for an orderly to help transport my large bag. With the PICC line in still deep in my artery I wasn’t taking any chances of rupturing something because I was hauling a large bag full of medicines and clothes.

I said good-bye to the nurses and thanked them as I passed the nurses station, tremendously relieved to be leaving the famous Ward Five at Ottawa General. I felt I had escaped with my life and wondered about all the deaths that had happened here. I was very thankful I had kept things simple and had prepared so well for the treatment, including cleansing my colon with psyllium husks. I never realized how deadly bad intestinal flora could be to someone who went through this treatment. Every four hours of my 18 days I was asked if I had diarrhea. When the body has no defenses any bad flora in the large intestine could easily become an infection sight and this was one of the major causes of concern in my treatment. This together with the anal region – open sores or hemorrhoids – as well as the mouth were the primary sites the doctors watched. And I had managed to keep everything clean. Interestingly this was what went through my mind when I passed by the nurses’ station as I left the Ward Five behind and walked to my freedom.

But man, did I ever need to brush my teeth!

I first stopped off at the pharmacy where I picked up all my medications – five of them, which included Tramadol for my headaches. And then I dumped my bag at admitting for the guy at the counter to watch my bag and I went up to Module L and picked up some taxi vouchers that had been left for me by my social worker. The woman behind the desk really took her time and seemed hysterical and distracted as I could barely stand waiting for her to give me the envelope. I had to show ID and then sign for it and it took so long. For a moment I thought I was going to faint because I became light headed but it passed. It gave me concern for how I was going to navigate the day physically. I had nothing in the tank.

Back downstairs I called a taxi and the driver was nice enough to load my big bag in the trunk. I rolled down the window and let the air blow across my bald head and loved every second of it. I felt free in a profound way. It was the beginning of a new life for me without a fatal disease. It was the first steps of this new era that promised much and deserved to be lived with purpose. It was sunny and hot and the air felt like the breath of God.

Once at the apartment I gave the taxi a voucher and then asked him to bring my big bag up the stairs. He motioned to a car that was waiting to turn in that was holding up traffic but I insisted. Besides the car could turn into the driveway if she wanted. It was just bad driving on her part. And I’m glad I had. I would not have had enough strength to haul the bag up the stairs. I thanked the taxi driver and once inside the doors the manager of the apartment Bridget greeted me warmly and welcomed me back. She handed me my key and said they had given me my old room back. She had always been very friendly but she was at her best. She knew of my treatment and must’ve seen that I was weakened and she did everything she could to facilitate my arrival smoothly. She asked me if I needed someone to help me with my bag and I said yes, and she called someone who arrived there in the lobby within ten seconds. I could’ve cried at how much I appreciated what Bridget had done.

I could barely walk to the elevator. And the guy could see that so he took it slowly and entered the elevator gently and showed finesse. Once up to the sixth floor I sauntered along the corridor to Room 604 where I opened the door and he took my big bag right into the bedroom. I thanked him as much as I could but I was out of breath and feint and immediately fell back on the couch where I didn’t move for an hour. I just breathed and rested, completely spent.

I had never been so weak and exhausted.

This phase of the treatment was what the doctors called convalescence. And it was mandatory the patient have a caregiver but in my case I didn’t. I knew that I was in danger of passing out from physical exhaustion or thirst or something like that but I also knew I had one more thing to get done, and that was to go food shopping. But I also knew I had to recharge, so I remained on the couch for another hour and then transferred myself to the bed where I fell asleep for an hour. I drank some water to hydrate and then returned to the bed where I slept for another hour. Only then did I feel up to calling a taxi and going to the food mart. And that’s what I did.

I moved slowly and carefully knowing I was pushing the limits. My feet hurt and my ankles hurt but I needed to get food. At one point I felt dizzy and thought I was going to faint but it passed. It was a red flag how dangerous this all was for me. And there was the threat of COVID with people wearing masks. I was wearing a mask too for the first time and it was very difficult for me to breathe. I bought as much as I could carry, which wasn’t much and then returned to the apartment with my food. Once inside my room I left the bags on the kitchen table and fell asleep again but this time on the couch.

I was too exhausted to even eat the two sandwiches I had purchased that were already to eat.

I was spent. Truly. Even walking within the room I was amazed at how weak I felt. That night I slept as deeply and soundly as I had in years, especially now that I wasn’t connected to an IV.

• Dying Overcome (Part 2)