Isn’t it wonderful to be alive? You know, you can forget all about it. Then suddenly you remember, and think of all the things you can do. Here I am. I can walk around. I can talk. I can see things and remember things. I am alive. How wonderful. – Sophia Loren
We were going to spend the winter wandering the Baja Peninsula in Mexico. However, this ultra-exclusive health club persuaded us to spend it here in Canada’s largest city, Toronto. They extolled the health benefits, stressing the exclusivity; there were just six available spots, and one had Christian’s name on it. They even offered to cover the $10,000+ supplements. And the clincher, there would be a steady stream of professionals attending to Christian’s every need, offering warm blankets, icy drinks, free wifi and more drugs than anyone could ever want. And the view from the most coveted treatment zone was to die for. Or not to die for, ideally.
Okay, it wasn’t a health club, per se, but an Outpatient Transplant Clinic on the 14th floor of Princess Margaret Hospital. But everything else is true. Christian is 31 days old today, Tuesday, February 7, 2023. In other words, it is Day 31 post autologous stem cell transplant (ASCT). If you’ve been following along, you will know that four cycles (months) of induction therapy (chemo) preceded the ASCT, as well as a slew of safety checks (tests) Christian needed to pass to undergo the transplant. What follows is a description of our life this past couple of months. It’s a far cry from wandering around Mexico, where we were sure we’d be spending/ avoiding this winter. So, if you’re interested in the details of our alternative journey, here it is, followed by a Q and A on all things ASCT, perhaps more than you ever wanted to know (that is how we feel), with answers by each of us. xo Christian and Julie
Contrary to what you may imagine, a stem cell transplant involves many steps. This was the timeline:
On December 14, my stem cells were collected, a process referred to as Apheresis. The actual collection took about 4 hours through a tube in my arm. I was lucky as some patients were sent home because the preceding four days of Grastofil injections (medication to make the stem cells multiply) didn’t yield enough for a collection, or they had to come back for multiple days of collection. Not to brag, but I was the star of the Apheresis unit. I collected twice as many stem cells as needed for two transplants in half the time I was told to expect.
On January 3, I had a PICC line installed in my left arm through which all blood could be taken, and chemo, stem cells, fluids, and infusions would be administered.
On January 4, we attended an orientation to prepare us for what was ahead.
On January 5, I received an injection of high-dose chemo (this took about 15 minutes) called Melphalan for the sole purpose of killing all bad blood cells and some good ones, too, preparing my bone marrow for the reintroduction of the stem cells, which were collected, frozen and saved.
On January 7, I received a bag of my thawed stem cells via the PICC line in my arm, which took about 20 minutes.
January 8 was Day 1 of being a born-again Christian (me). I was born again because I was like a newborn baby with no immune system, and my body had to learn how to do things again from scratch.
January 19, Day 12, was a momentous day as the stem cells started engrafting, urged along by a few days of more Grastofil injections. From this day on, blood tests began revealing counts of neutrophils, white and red blood cells, etc.
By January 20, Day 13, I was released from daily visits to the transplant clinic. We only have to go once a week to have my blood taken and tested, symptoms and side effects managed and treated, and fluids given as needed. This process is nothing short of a marathon. I was told by another patient with Multiple Myeloma that Melphalan, the high-dose chemo drug administered on January 5, is derived from mustard gas. Melphalan is indeed the gift that just keeps on giving adverse side effects.
ASCT Q and A (the good, bad and ugly shared with complete honesty):
How did you feel about embarking on the ASCT as part of your treatment plan?
CHRISTIAN: We knew the ASCT was the prize after four months of induction chemo. It was a big undertaking, weeks of preparing, testing and procedures. I can’t imagine, nor am I aware of, any alternative to stem cell transplant in Ontario. It’s the gold standard for blood cancers.
JULIE: We were both excited. Following four months of weekly chemo, getting to this point felt like progress, like we were that much closer to getting to live the way we wished to. That was how it was presented to us in August, induction therapy followed by an ASCT, then topped off by a daily drug cocktail until relapse. Bam, we would be back to living the nomad life. Ish!
What does it mean to do the transplant as an outpatient?
CHRISTIAN: I decided to do the transplant as an outpatient. I could sleep at home, go outside, and eat what I liked (not hospital food) throughout weeks of daily visits to the Outpatient Transplant Clinic at Princess Margaret Hospital. We would arrive at the hospital daily by 8am and be there for roughly 5 hours. During those hours, the nurses and nurse practitioners would take my blood, monitor and treat my side effects, prescribe medications to be taken outside of the clinic, give fluids and medications, answer questions, and when they deemed it safe, release me to Julie’s care armed with guidance for the intervening hours. They were also available to us 24 hours a day by phone.
Do you feel the care team prepared you for what was to come?
CHRISTIAN: The care team defined includes my primary oncology doctor and nurses at Humber River Hospital (HRH) and the transplant team at University Health Network (PMH and TGH). From August 25 until January 3 was almost entirely ‘preparation’ for the ASCT. The nuanced references to ‘side effects’ by the entire care team understated the side effects of chemotherapy and the ASCT. My transplant coordinator prepared and guided us through the transplant during a two-hour orientation on paper a month beforehand.
Julie: It was all outlined very clearly. They could even tell us when to expect adverse side effects from the high-dose chemo, when to watch for infections and fevers, when the stem cells would begin engrafting, etc., right down to the day. But living and experiencing differs from seeing it on paper or in a video.
Is there anything you would have wanted to know beforehand that you did not? Any surprises?
CHRISTIAN: I joked with the care team and Julie (the BOSS of the care team) after the process started that if patients knew what would happen to them, they might not do it!
In truth, keeping my cancer at bay for a couple of years or ten is worth the curves in the road.
In retrospect, it would have been good to know more about ‘deconditioning.’ This body may have finished the transplant day with a 6 km walk, but the best I can do now is about 2 km. Fatigue, shortness of breath, and the weather haven’t helped with powering up those walks.
JULIE: Not really.
Was it harder or easier than you anticipated?
CHRISTIAN: It was not easier than I expected. A bit harder because of nausea, which is a feeling that supersedes everything else. I would have a sense that I might be getting hungry or thirsty, but if nausea started to well, it was all we could do to keep the nausea meds from making a second appearance. For me, nausea and its control were the most challenging parts. It might be my tetchy stomach and heightened sense of smell, but nothing could prepare me for the other patients receiving their stem cells, giving off a pronounced odour of creamed corn. The smell is pretty awful. Fortunately, the patient has no sense that they smell like a corny side dish.
JULIE: Harder. First, being back and spending so much time at Princess Margaret Hospital triggered PTSD. This is where my mom endured 3 solid years of treatments, including radiation, chemo, trials, and surgeries that would leave her disfigured with unmanageable pain. She and my dad lived with us for most of those three years while she underwent treatments and eventually died. I had suppressed those painful memories, and being back at PMH brought them back.
I experienced increased anxiety, particularly leading up to the transplant. They warn caregivers, for instance, that if the patient develops a fever of 38.3 C, to rush them to the hospital immediately. One night Christian had a fever of 38.2 C, which fortunately resolved on its own. We were instructed not to call an ambulance! Aside from caregivers and clinic staff, everyone else is a risk to patients while they are neutropenic, meaning they have no white blood cells to fight off infection. I kept waking throughout the night to check Christian for fever and other adverse side effects they told us to watch for, worried that I might sleep through something critical, thus risking his life. I worried every time he started vomiting or was too unsteady to walk. I worried he would slip on the ice as any skin break or bruise could lead to infection. The pharmacy staff frightened me with their warnings about the risks and side effects associated with certain medications. I watched as Christian’s colour changed, his eyes dimmed, and he shed more weight, hair and skin; I was helpless as he battled fatigue and round-the-clock nausea. And the isolation, being unable to see people, afraid to leave him in case he needed me, was all such a weight.
Would you do it again?
CHRISTIAN: In a word NO, but yes, I would if I could do it four years from now, not two months from now. A tandem ASCT at the end of March is not for me; the benefits are outweighed by the sheer immensity of a second ‘tandem transplant.’ I’ve got places to go and spaces to fill.
JULIE: I will support and love Christian no matter what. Whenever he chooses to embark on another transplant, I will be there with him, armed with knowledge and experience from this one. However, knowing how he feels now, I can’t imagine embarking on a second transplant in two months. I can’t imagine Christian going into a second one, potentially weaker than he was going into the first.
What was the best part of the experience?
CHRISTIAN: Every day, getting home to our borrowed digs, warm up and power down for an afternoon walk and cuddle.
JULIE: We met other transplant patients and caregivers we got to know during our daily visits to the outpatient clinic. It would have been a much different, more solitary experience if you were experiencing it alone in a hospital room as an inpatient. Because we love meeting people choosing the outpatient route suited us. We’re also not terribly private, so the oversharing in an outpatient clinic was a comfort. Transplant dates were staggered, so patients were a day ahead or a day behind Christian in the process, so we could often see what was coming. Of course, not everyone had precisely the same experiences. One patient developed an infection and, we presume, had to be admitted to the hospital. Another was going through his second transplant after finishing the first in November. And a third was two or three days behind Christian, and most of her experience mirrored his. I could talk with other caregivers and commiserate with people whose experiences and feelings mirrored my own. The nurses and nurse practitioners are compassionate and adept at anticipating and problem-solving symptoms. Plus, they were available to us by phone 24 hours a day. They made it all bearable.
I spent a couple of hours each morning walking, exploring, seeing, and remembering this part of the city where I spent so much of my twenties and thirties. All the while, I snapped photos which I made into videos for Christian to watch while he sat in the transplant clinic and shared on Instagram. I am so glad that the transplant took place downtown rather than, for instance, Humber River Hospital. I could walk these streets every day and never be bored.
What was the worst part of the experience?
CHRISTIAN: Worst isn’t the word. It’s too negative: most challenging or difficult. Because the process aims to buy some time, a bit more time to hang with grandkids and our kids, to travel more, not less and to live the heck out of what’s left. You already know that nausea was my Achilles heel. Nausea can be intractable and immovable.
JULIE: Feeling helpless to make Christian feel better. The fatigue. On the 14th, I backed the van into a concrete pole near the hospital. I was just that tired. The van sustained a minimum of $7,000 in damage to the back corner. The time and energy needed to deal with the insurance company and auto body work we absolutely didn’t need. While Christian was in the transplant clinic, they advised caregivers to use this time to do errands and grocery shopping. This would be our time while the patients were being cared for by nurses. In addition to walking to buy groceries, I would walk between 7 and 10 km each morning (this was a good experience). Over those weeks, I developed a pain in my left hip, which seemed to grow into stomach pain, but I couldn’t visit my doctor (time and neutropenia). On the first morning, we didn’t have to go to the transplant clinic; I saw my doctor. My symptoms worsened in the days that followed and culminated with what I thought was a heart attack. Christian called an ambulance, and after many tests, the second ER doctor wondered if I was experiencing anxiety attacks. I was relieved on the one hand and incredulous on the other. How could I have anxiety attacks now when the most challenging part was over?! Doctors, Christian and friends reasoned that my body had been in fight mode until now and that all the accumulated stress was finally being released. The jury is still out on anxiety attacks. Still, I am sure stress is a factor in the varying array of physical symptoms I continue to experience.
Were you happy with the care provided by the nurses and nurse practitioners?
CHRISTIAN: What a powerful, wise, and warmhearted vocation. The nurses are the team that changes the tires and checks the fluids in record time every day. Speaking of the Autologous Transplant Day Hospital and when my PICC line was installed, what friendly, efficient and knowledgeable workers.
JULIE: Exceedingly. They are heroes.
Are you glad you chose to go the outpatient route?
CHRISTIAN: Oh, yeah. The alternative is inpatient, where aside from walking your IV pole around the hospital halls, the patient is confined to a private or shared hospital room for two to three weeks. As an outpatient, we got to share meals, go for walks outdoors, and even hike from wherever we parked in Chinatown to and from the hospital.
JULIE: Yes. See, what was the best part of the experience.
Has this process changed you?
CHRISTIAN: Nope, not at all… 😉
I am more conscious of my health and my energy levels. That could be a thing later; Julie and I live to climb rocks and swim in lakes and oceans. For instance, there are issues like where to go and how to do it, camping at the rim of the Grand Canyon. We need to know the nearest urgent care or ER if I get an infection or a complication. I think we still want to travel in a largely unplanned way, but with a nod to cancer (whom we hope will take the back seat, so to speak, for a while).
JULIE: I am learning that I need to take care of myself in addition to caring for those I love. I am learning to be more patient. Particularly about the future. We haven’t been able to plan, often even a day ahead, for so many months now. That caused me anxiety initially, but now I probably understand what ‘being present’ means more than I ever did before. I definitely no longer take good health for granted.
Are you now cured or in remission?
CHRISTIAN: Neither, really. My cancer is incurable but controllable with medications like Thalidomide, Lenalidomide, and Dexamethasone. I hope to go into remission (my cancer hibernates for a while). Remission is managed with weekly, monthly and quarterly blood and urine testing, and the medications mentioned above are self-administered.
JULIE: Doctors were clear from the beginning that Multiple Myeloma is treatable but not curable. It wasn’t until December that we learned that the genetics of Christian’s cancer is high-risk and rare. Treatment options change or become more limited when this is the case. We hope that all the treatments he has received up until this point will result in remission.
Do you know what comes next?
CHRISTIAN: I’ve got two months of healing to do. I’m sure there’ll be lots of blood tests, getting back into hiking and biking, and working on our photography game. We have lots of writing and photo projects to keep us busy.
JULIE: No. We understand that all of the tests done before the transplant will be repeated at the end of March, and then we will learn if Christian is in remission. We really hope this is the outcome!! If the cancer is still active, the oncologist may recommend a second transplant right away. At this time, Christian has indicated that he is unwilling to undergo another transplant right away. We’re hoping what’s next is a cocktail of medications that will keep cancer at bay for several years. We just don’t know.
Are you able to plan yet?
CHRISTIAN: I am living more or less in the present. As far as travelling in the future? It’s hard to plan now. We hope to loosely plan in two months.
JULIE: No. Until Christian has recovered from this transplant and all necessary tests are done, and results are revealed, we cannot plan. Also, 100 days post-transplant inoculations begin. Christian will continue to have no immunity until then. He will have to be reinoculated for everything from birth: tetanus, TB, chicken pox, polio, Covid, etc. The process of reinoculation takes several months.
Hope is not a lottery ticket you can sit on the sofa and clutch, feeling lucky. It is an axe you break down doors with in an emergency. – Rebecca Solnit
Are you hopeful and excited for the future?
CHRISTIAN: Yes! Heck— I’m hopeful and excited every day when I wake up! Aside from the minor complications, this process has buoyed my mood and outlook for the future. I feel the urgent need to move on, give our friends their house back and embrace however much the future holds.
JULIE: Of course. We are both excited to travel again and so ready to live again, really live, to spend time and share meals with the people we love. Once Christian is well enough, we intend to make the most of every day. Until Christian has immunity, our travel will be limited to van travel which is okay with us. We won’t be flying anywhere anytime soon. We also realize we need a home of our own sooner than later. We need to be prepared for a relapse. It is not a question of if but when. We can’t afford to remain in Toronto, so we will explore our options once Christian is well enough.
Do you have any advice for future recipients of ASCT?
CHRISTIAN: Before you undergo ASCT, listen to your doctor, nurses, and transplant coordinator. There’s a ton of information coming your way, and your transplant coordinator has info to share with you. If going too fast, ask to hear it again, and for heaven’s sake, after the ASCT, listen to your body. Back pain? Loose bowels, headaches, fevers and Nausea are all things your body uses to tell you what it needs or doesn’t.
JULIE: Consider doing it as an outpatient. Of course, you need to live within 45 minutes of the hospital and have a willing and able caregiver available 24 hours a day for more than a month. Keep as active as possible before the transplant. All of our walkings helped Christian. Even on the day of his transplant, we walked more than 6km afterwards. So many of the other patient’s caregivers would drop them off at the entrance to the hospital and then go to park their vehicles. Christian insisted on walking from wherever we could find parking for the van daily. Sometimes he would have to walk up to a kilometre each way between the Hymer and the hospital. The nurses approved and said this would only aid in his recovery.
‘In order to grow… you must betray their expectations.’ – Hayao Miyazaki
And if you haven’t yet subscribed to our blog, we’d be grateful if you would. Thank you! Julie and Christian