A little bit about you:

Name: Mike Wark

Age: 29

City: Red Deer, AB

What was/is your diagnosis? Acute Myeloid Leukemia (AML)

What year was it? What was your age at the time? June 2018 at age 27

What is something you’ve done that you’re really proud of?
Beating cancer and getting back in shape again after treatment. I’ve been in full remission since January 2019 and was recently able to return to work again after a lengthy medical leave. Also, finding ways to get involved and give back to the young adult cancer community has been an achievement I’ve been very proud of.

What is a top item on your life to do list?
Raising kids. At the time I was diagnosed, my wife and I had just been starting to think seriously about starting a family. Now that I’m past my battle with cancer, I’m looking forward to making good on that dream of becoming a dad.

What are your hobbies?
Writing, woodworking, outdoor sports of any kind (especially snowboarding), board games, date nights with my wife, and travelling are all things I love to do.

 

Your diagnosis:

What was your life like before your diagnosis?
Lots going on, and lots of dreams for the future. Both my wife and I had been pretty career-focused up until that point. We had been married almost five years and had both spent most of our twenties working through various post-secondary programs with the aim of getting established in our working lives before starting a family. After completing my Bachelor of Arts in International Relations in 2013, I had switched gears into the construction trades and recently finished a four-year Carpentry apprenticeship, passing the exams for my Red Seal Journeyman Certification and Certified Associate in Project Management (CAPM) designation. I had been working for a small homebuilding company in Red Deer for the past several years, and was also actively involved in my church’s men’s group, planning seasonal special events and retreats. I had a great community of friends and family around me, and considered myself blessed to have such great support when the time came that I was diagnosed.

How did you find out you were sick? What led to your diagnosis?
It all happened pretty fast. On the first weekend of June 2018, I was away on a weekend adventure retreat with some friends and noticed that I was having trouble keeping up while on a mountain biking circuit. The fatigue continued to get worse, and about a week later, I started developing flu-like symptoms that refused to go away and would keep me up at night. My GP ordered blood work which revealed that my blood counts were all at abnormally low levels, and then ordered a hematologist referral in Edmonton, several weeks away. However, after another week of feeling lousy and not wanting to wait that long to see a specialist, my wife convinced me to get checked out at the emergency room at the Red Deer Hospital.

I was admitted right away, and following two days of exhaustive testing and a bone marrow biopsy, it was determined that I had an aggressive form of leukemia, most likely AML, and was in need of immediate treatment. I was diagnosed on June 21, 2018, and that afternoon was taken by ambulance to the Tom Baker Cancer Centre in Calgary to begin chemo later that week.

What were your first thoughts when diagnosed?
Those early days are kind of a blur now. However, one memory in particular still stands out to me. While waiting to see a hematologist the night I was brought into the hospital, an internal medicine resident came in and did a preliminary assessment on me. He commented that my spleen was enlarged, and that that was a common early warning sign indicative of leukemia. That was the first time that cancer had crossed our radar as a possibility, and I remember thinking “whoa, this could be serious.” Up until that point, I had thought maybe I was dealing with some sort of medication imbalance that could be upsetting my blood counts. After that, things got pretty serious pretty quickly.

A couple days later, when we heard from my doctor that it was definitely leukemia, it felt as if my whole world had been turned upside down in an instant. After an hour or so to process the news, we began making calls to let friends and family know what was going on. My first thoughts at that point were that my plans for the summer had just gone out the window. At that point, I had no idea just how life-changing my diagnosis would really be.

In which hospital(s) are/were you treated?
I spent three days at Red Deer Regional Hospital where I was diagnosed, before being transferred to the Tom Baker Cancer Centre at Foothills Hospital where I spent the next eight months undergoing treatment in Calgary (from June 2018 – January 2019).

What did your treatment consist of? .
Upon my arrival at Tom Baker in late June 2018, I underwent a battery of tests to determine the best treatment protocol. Following that, I began seven days of 24/7 induction chemo through a newly-installed IV central line in my chest, aimed at hopefully putting me into initial remission. This protocol was successful in achieving this, and after five long weeks in the hospital and another bone marrow biopsy, we received the good news that the leukemic blast cells in my bone marrow had been reduced from 83 per cent down to 0.2 per cent. This was our first big win.

As this was going on, my medical team was conducting extensive genetics testing to determine the sub-type and risk factor of my AML, which would dictate how to further proceed with treatment. These tests determined that my AML had no genetic mutations, and I was firmly within what was deemed the “intermediate risk” category. This meant that we had two possible treatment options:

• Option 1 would pursue a chemo-only protocol of another four more rounds, which would be less invasive, but would only place my odds of not relapsing at around 50 per cent.
• Option 2 would pursue an allogenic stem-cell transplant, in which a genetically matched donor would (hopefully) be found to effectively replace my broken immune system with a functioning one. If successful, this would reduce the odds of relapse down to about 25 per cent, albeit with more complications and a longer recovery time. My medical team left it up to us to decide which route to take for treatment.

It was an agonizing decision. While pursuing transplant would mean a higher chance of long-term survival, it would also mean months longer in and out of hospital, heavier chemo than I had yet endured, a year or longer recovery period, increased risk of infections and co-morbidities — an ugly word for secondary things that can kill you as a result of cancer treatment — and likely the destruction of any of my remaining fertility, if it  hadn’t been already wiped out by the induction chemo.

After several days of prayer, thought, and discussion, my wife and I decided that if a matched donor could be found, we would pursue the option for transplant. The way we saw it, transplant offered the best chance for having a long, healthy life ahead of me, and this battle with cancer was already tough enough as it was. We didn’t want to have to fight it again in a relapse situation if we could avoid it.

It took about three weeks, but by the grace of God, a genetically matched 10/10 donor was found who was willing to donate stem cells — 1 out of 25 million on an international database. The transplant procedure was scheduled for mid October 2018, the earliest possible date, and in the meantime, I was given two more rounds of chemo to keep me in remission, each lasting about a month for the whole cycle. Eight days prior to transplant, I started on heavy prep chemo, total-body irradiation, and a series of powerful anti-rejection drugs, and on October 24 2018, my donor stem cells were express-couriered from my donor (global location unknown – I may get to find out in another year if I’m lucky) to my hospital room (they came in what appeared to be a very expensive lunchbox), and I was prepped for transplant. In a procedure very similar to a blood transfusion, approximately 766 million donor stem cells were infused into my bloodstream over the course of about two hours.

Recovery from transplant was a bit of a rough ride. I had dealt with the side effects from chemo before (hair loss, nausea, fatigue, fevers, etc.), but this was considerably worse. I was an in-patient going through recovery for about three weeks, and during that period (also over my 28^th birthday), along with the previously mentioned symptoms, I developed debilitating mouth sores that made it difficult to talk or eat and was hooked up to a continuous morphine drip for several days to get through the worst of it.

When I was healthy enough to be released to out-patient status, I went through a 100-day post-transplant observation/isolation period, where I was closely monitored for a condition called Graft Versus Host Disease (GVHD), which is where the transplanted stem-cells can attack their new host body (mine) as they continue to graft and multiply. Thankfully, despite what felt like an endless waiting period, I made it through with only minimal effects from the GVHD, and only a couple post-transplant infections, which I’ll spare you the details of.

What is your current medical status?
100 per cent cancer-free! Following another bone-marrow biopsy in January 2019, I was pronounced in complete remission. The stem-cell transplant was a total success.

Life after cancer:

How is life different for you now post diagnosis?
So many ways. Oftentimes, I have to remind myself that I’m not the same person that I was before I was diagnosed. During treatment, I lost about 20 lbs, couldn’t eat much without throwing up, couldn’t be outside my hospital room without a mask on for fear of infection, and for a time, wasn’t even sure if I’d survive everything I was going through. But I like to think that for all that, the experience has made me wiser, and (hopefully), more attuned to the things that are really important in life.

Before I was diagnosed, I put a heavy emphasis on finding my self-worth in my productivity and what I could accomplish. Cancer stripped me of that when it uprooted me from my home and removed my ability to work and my independence. Now, I’m slowly coming to the realization that I am not defined by the things that I can do, but rather by how I choose to respond to the things outside of my control. Really, that’s all any of us can do; we can choose to get better, or we can choose to get bitter.

“I’m slowly coming to the realization that I am not defined by the things that I can do, but rather by how I choose to respond to the things outside of my control.”

I’ve been blessed with a near-total physical recovery since hitting complete remission earlier this year. I started working out at the gym daily when I returned home, regained the weight I lost to chemo, and am now in better shape than I was before diagnosis. So far it’s been going pretty well. At this very moment, I would probably say I am at least 90 per cent back to my old physical baseline.

My Christian faith and spirituality were tested during my experience with cancer. Oftentimes, I found myself wondering where God was in the midst of it all, and why this was all happening. But God would show up in unexpected places during my treatment and recovery, and now, especially having faced the very real possibility of my own death, I feel that my faith is stronger and richer than it was before having been through this experience. Really, it’s one of the key things that I credit for my nothing-short-of-miraculous recovery.

Cancer did a real number on showing me who my true friends were. Some people stepped up in unexpected ways — visiting us in the hospital, supporting us financially, spending time with us during the periods of endless waiting, calling to check in, etc. Others more or less fell off the map — perhaps a message of sympathy when I was first diagnosed, and then no more contact until after I returned and was healthy again. I guess maybe they didn’t know how to deal with my diagnosis. I can’t say I blame them for stepping away, that’s on them, and my bearing a grudge won’t solve anything. If anything, now I have a greater appreciation for the friends who stayed by my side when I was at my worst.

What is/was the toughest part about having cancer as a young adult?
When you’re a young adult, you have so many dreams for your future. For me, those were kickstarting my career, raising a family, travelling around the world, getting financially stable after university, and deepening my relationships with the people in my life who really mattered. Cancer delayed a lot of those dreams for me, and for many of my fellow survivors, may have destroyed them entirely. I have been lucky enough to more-or-less pick up where I left off pre-diagnosis (at least in terms of my work and physical health), but I feel as though in many ways, my life was on pause for that 16-month period when I was in treatment and recovery. Often, I feel as though I’ve been robbed of time that I would have otherwise used turning those dreams into reality.

One of the toughest things for me to face is the thought that cancer may have stolen from both my wife and I our dream of having our own children due to the treatment I went through. While there is still hope, we have to live with that uncertainty hanging over our heads. I suppose time will tell what that looks like for us.

What really helped/helps you to keep going while you were/are sick?
Having friends around, and especially the support of my wife, Lauren, during the seemingly endless waiting periods made a big difference. She was with me every day of the eight months I was in treatment. Knowing I wasn’t alone through it all helped me get through it, and continues to do so.

In addition, my faith in God played a huge role in getting me through tough days when I was sick. There were moments when I felt like giving up, or when the pain seemed like it was too much to handle – but knowing that I wasn’t alone no matter what I faced made all the difference. Looking back on my treatment and recovery now, there are just too many things that came together perfectly for me to be able to write them off as coincidence. It’s taken some time, but I believe now that without that faith, I wouldn’t be where I am today.

What kept you/keeps you busy during treatment?
When I was feeling well enough, I spent a lot of time blogging about my experience with cancer. It was therapeutic for me, and also a great way to keep friends/family in the loop so we weren’t sending out a thousand email updates.

I also tried to stay as active as I could throughout treatment and recovery. Daily walks with the dog, yoga classes at Wellspring, and exploring hidden parts of the hospital (even while plugged into an IV receiving treatments) became part of our routine, and I partially credit this for aiding in my physical recovery.

How are you connected with Young Adult Cancer Canada? How did it happen?
I became friends with several of my nurses when I was an in-patient, and one of them told me about YACC and Localife Calgary. Last December, I convinced one of my buddies to attend a Localife Christmas party at the Wellspring location close to Foothills hospital, and I made some great new connections. After treatment, I continued to remain involved, and have recently started working with other cancer survivors and YACC on getting a support group for young adults off the ground in the Central Alberta area. Young Adult Cancer Central Alberta (YACCA) was officially born in January 2020 and we are excited to see it grow!

The issues:

Did/Do you feel isolated from your peers since your diagnosis? If so, how did/does that affect you?
Yes. For the most part, those who were close to us prior to treatment stuck with us. For those that didn’t, one of the toughest things after treatment was having to deal with the question from them “so you’re good now, right?”

I just don’t have patience for that question anymore. It’s a complicated one, and for those who don’t understand that, trying to explain it often doesn’t do much good in helping them to. That being said, I try to answer with as much dignity as I can muster.

In many ways, I feel as though I’ve developed a new peer group since my diagnosis in my connections with fellow survivors and their supporters. They are the only ones who really “get” what it’s like to have your whole world turned upside-down by cancer. When I have the opportunity to meet with them, I don’t feel isolated at all.

Did anyone talk to you about fertility options before treatment? If so, how did that affect your decisions? If not, what do you wish you had known?
The early days of diagnosis are a bit of a blur now, but yes, I do clearly remember my hematologist talking to me about fertility options prior to treatment. I had just returned from a morning of pre-treatment tests, and upon my return, my doctor met me in the hallway to tell me that she had booked me an immediate appointment at the fertility clinic and I had half an hour to get down there if I wanted to preserve my sperm prior to starting chemo. Since we knew that chemo would likely destroy my fertility, we took the appointment. It seemed like a no-brainer at the time, since our options were to either lose my fertility or lose my life.

Since my wife and I are wanting to start a family in the near future, we know that IVF is a viable option for us, however it is horrendously expensive with no guarantees of success and no available public funding, at least for Alberta residents. This is incredibly frustrating. Similarly, we would also consider adoption as an option for having children, however this is also an expensive process with many procedural hoops to jump through. I suppose we are still figuring out what to do with this one, when it comes to our options for becoming parents.

How has your cancer experience affected your body image, and your relationship to your body?
For me the biggest thing was having to wear a mask whenever I was outside my hospital room or house. For a while when I was immunocompromised, I felt like some sort of pariah, and would worry how people would react when they saw me, or that they would be silently judging me, or worse, pitying me. Now that I’ve got my immune system back, regrown my hair, put the weight back on, and gotten back in shape, I feel my body image is more or less back to where it was before I got sick. Still got the scars, though.

What are some lifestyle changes you’ve made since your diagnosis?
I think I’m a lot more conscious now of how I treat my body, especially with regard to diet. I’ve cut a lot of processed foods out, especially white sugar and foods with antibiotics, growth hormones, etc. While that stuff didn’t cause my cancer, it certainly doesn’t help my body, and since I’ve been given a second chance, I want to do my best to take care of it.

One of the biggest takeaways I’ve learned from my experience with cancer is that ultimately, none of us knows how much time we have, and nothing in life is guaranteed. So, with that in mind, I believe it’s far more important to value relationships over material things, and to make the most of the time that you do have, wherever situation you are in — whether it’s five minutes with a person or 50 years. While I may not always be very good at it, my experience with cancer has taught me the importance of staying grounded in the present and giving whoever I’m with my full attention, rather than getting lost in the past or the future. I would call that a lifestyle change.

 

Resources and recommendations:

What would you add to a treatment-day playlist?
I had a few songs for when I was getting procedures done that helped get me through, and at times, had my doctors busting a gut from my drug-induced karaoke sessions. Here are a few:

• “Ice Ice Baby” by Vanilla Ice
• “Bohemian Rhapsody” by Queen
• “Can’t Stop the Feeling!” by Justin Timberlake
• “Graceland” by Paul Simon

Which books/movies/podcasts/TV shows/etc. would you recommend?

• Twelve Rules For Life by Jordan Peterson
• The Great Divorce by C.S. Lewis
• Proverbs, Ecclesiastes, and Psalms – The Bible
• The Art of Manliness podcast and website
• Essential Craftsman, a YouTube channel on woodworking and construction

 

Stay in touch:

What would you like to say to other young adults dealing with cancer who are reading this profile?
Wherever it is you’re at, whatever it is you’re facing, you are not alone in what you’re going through. While the life you once knew and the path you thought you were going down may have changed, ahead of you lies a far bigger and brighter future than you could have imagined. This may be the toughest thing you have ever encountered, and while it may feel as though your life may be over in this moment, if you allow it and choose the path towards healing, you can emerge from this richer in wisdom, experience, and stronger than you have ever been before.

Please reach out and connect with other young adults because they know what it’s like to walk in your shoes, and there is tremendous healing in having others on your side who can relate.

Are you interested in helping others facing cancer challenges? If so please let us know how you can be contacted.
Absolutely. I am always available to talk with fellow survivors or supporters, and want to do everything I can to give back to this community.

If you want to get in touch with Mike, please send a message to [email protected] and we’ll forward it along!

If you would like us to link to your social media profiles or blog, please leave the url below:
My personal blog documents the time from my diagnosis to present day. Thanks for taking a look!