In December of 2017, as I trudged up the stairs to a hot yoga class, a poster caught my eye. It said, ‘YOGA TEACHER TRAINING IN NICARAGUA’. I had been a musician for more than 15 years, supporting myself on the side as a server and bartender. The grind of trying to support myself through music and serving had become challenging. As I grew older and had more responsibilities to handle, the wanderlust, and often money-deficient lifestyle of music was starting to get hard to maintain.
I had gotten married the year before, and while I know my husband endlessly supports my pursuits and dreams, the purchase of our first home and its required renovations left a huge strain on our relationship and I often felt like I couldn’t contribute to our life together in the way that I wanted to financially. We also wanted to have children in the next year or so, and I wondered how we would make it work. I longed for a better way.
I had been practicing yoga for over five years and truly enjoyed the practice itself. One of my best friends was a yoga teacher and watching her grow into the amazing woman that yoga gave her the channel to become was inspiring. As I looked at the poster, I became convinced that this was my way out. This was the way to make all of my problems dissolve. Become a yoga teacher (during a month in Nicaragua, sweet!), practice and teach something I enjoyed, make some extra money and still get to pursue music. What could be better?
I ripped off the little email strip, and as I practiced yoga that day, I dreamed that everything would change. As the sweat fell off of my body, the fears that had dogged me down began to fade away. I visualized that I would become a yoga teacher, finally have financial control of my life, have a baby with my husband, continue practicing music and truly live the life of my dreams.
Over the next few weeks I convinced my husband and family that this was something I needed to do. Every fibre of my being was screaming at me to do this. I worked every shift possible and scraped as much of the $5000 together for the trip as I could. My parents and husband saw the fire in me to achieve this goal and helped chip in every chance they got. In January, it was official. I registered for teacher training and was set to leave in March of 2018 for 30 beautiful days in sunny Nicaragua.
To prepare for 30 days abroad, they suggested having a physical to ensure I would be safe to be at a resort far away from regular medical treatment. I had been extremely healthy for several years after really buckling down on my health and working to correct life-long nutritional absorption issues. I hadn’t seen a doctor in nearly three years, I’d barely even had a cold! I figured I was due for check-up anyways.
They day after my checkup, I received a call from my doctor. She personally requested my presence in her office immediately. My heart skipped a beat. I had just clocked in at work and knew I wouldn’t be able to get someone to cover my shift now. I told her I couldn’t make it in that day, and she told me she was working in urgent care the following day, and to come and see her there first thing in the morning.
Due to the wonders of technology, I had access to my blood test results from the day before, and when I logged on after work to see what she was so worried about, I nearly had a heart attack. An endless list of ‘abnormal’ filled the screen. Almost every single blood count was too high or too low, and my drastic amounts. I immediately started googling what this could mean and narrowed it down to infection or cancer. My husband and parents told me that everything would be fine, and I tried to believe them. But my heart already knew it. I couldn’t sleep at all that night.
The next day, I walked into urgent care, and instead of making me wait they walked me right into a room in the back and closed the door. When my doctor walked in she closed it quietly behind her and said,
“Listen. There’s something seriously wrong. I think you have leukaemia. You’re going to go to the hospital and see a haematologist. I’ve already set up the appointment. You need to cancel your trip. Your blood counts are so high you could have a stroke. I know you really wanted to go. I’m so sorry.”
Just like in a movie, I thought it was a joke. There had to be a mistake. “Are you sure you’re not looking at someone else’s chart?” I asked, hoping she was the worst doctor in the world and had made such a silly mistake.
“No. This is your chart.”
“Are you sure it’s not just a really bad infection and I can maybe just get better?”
“Yes. I’m sure. You have leukaemia. I’m sorry. I don’t know what kind, but they will tell you at the hospital.”
I left the office in a daze. I went out to my car and called my sister in tears. “I have fucking leukaemia,” I said. She came and met me in the parking lot and we ate dairy queen for breakfast. I cancelled my Yoga Teacher Training Trip (you can read more reflections about that here). Then we went to my house and drank a bottle of wine at lunch. What the hell was happening to my world?
It was few days before I had my appointment at the hospital, with my Hematologist, Dr.Kopolovic. She was probably not much older than me, very cheerful, and put us at ease right away. She told me not to worry, that maybe it wasn’t even leukaemia. I was so young that it was more likely to MDS (Myelodysplastic Syndrome) than cancer. I let myself breathe a small sigh of relief.
I waited another week for my bone marrow biopsy, which was one of the most painful things I’ve ever experienced. I’m not sure if I could even articulate into words how uncomfortable it is to feel the pressure on your bone as the needle goes in and then wiggles slowly out for the aspiration. It’s kind of akin to someone scraping a million plates with forks at the same time. I hoped I would never have to do it again.
On February 12th, about 10 days later, we got the results. My doctor was very sorry to report that she had been wrong. I was diagnosed with Chronic Myeloid Leukemia in the Chronic (first) stage.
She still managed to be so positive, which at the time helped ease the immediate panic I felt. She tried to liken CML to winning a lottery of sorts- for cancer. It had progressive treatment and great odds. While a Bone Marrow transplant is the only cure for CML, research had advanced the field so much in the last twenty years, that there was now a pill I could take every day, that would diminish the cancer cells to a nearly undetectable level. I could skip chemo. I could keep my hair! I could keep working. This drug worked so well, it would hopefully allow me to maintain a nearly-normal life, for a nearly-normal life-span. What was this wizardry?
All I had to do was take this one pill, every day, forever- at a cost of around $5600/month. It was called Dasatinib (Sprycel).
I was elated, but confused. How could I have cancer, that isn’t really like cancer? My perception of cancer had always been the one I had mainly seen in movies. You have a tumor and remove it, or you have chemotherapy and you get really sick. You lose all your air. Sometimes you could even die. Cancer was scary as hell. It’s taken some of my friends. It’s affected many members of my family. This didn’t seem that scary at all so far.
I still had a lot of questions. Why could we diminish it but not cure it? How would we pay for the drugs? Could I ever have children? How was this all going to work?
Over the next couple of weeks, I read all the pamphlets the doctor had given me and started doing some research on my own. When I say some, I really mean lots, because I’m a bit of an information addict and fully understanding what was happening to my body on the deepest level gave me a sense of control in the midst of the madness and confusion.
There was a hold up getting approval from the insurance company for the drug my doctor had chosen to treat me with. After discussing how my husband and I had hoped to have children soon, which led my doctor to selected a second generation TKI (Tyrosine Kinase Inhibitor), which would target and hopefully slowly kill off most of the PH+ cells circulating in my blood and bone marrow faster, and to a deeper response level than the drug they were typically using for first line treatment at the time (Gleevec). She had seen promising studies of people who achieved a deep enough response early in treatment to pause, or shift drug treatment onto a pregnancy safe method of controlling my blood counts, for long enough to carry a child. My insurance company pushed back. They wanted me to take what the typical first line approach.
While the argument between my doctor and insurance company ensured, I found a group online through my maniacal google sessions that was meeting in Toronto, and it was all people with CML. The thing about CML is, not a ton of people really have it. It’s hard to find a group of other people that truly understand what you’re going through because it is a rare disease. My husband and I went to a meetup in Toronto at the Canadian CML Network for the first time and I instantly knew I had found my tribe. These people spoke my language. Literally- we talked about all kinds of medical stuff that only people with CML ever talk about that drives my friends and family crazy. BMB’s and PCR’s and WBC’s, you name the acronym, everyone understood it. It felt like a relief to know I wasn’t alone. To meet other people, and especially a couple of other girls my age who were living, happy, and making CML work for them. It gave me hope that things would work out for me too.
My doctor pushed back harder against my insurance company and explained how important having children was to me. They eventually relented and agreed to cover the drug, and I laughed and cried at the same time when I picked it up at a local pharmacy they required me to use, after waiting five days for them to order it in specially, only to find that I still had to pay $600 out of pocket, because the annual cap on drugs through my insurance plan was $5000, and since the prescription was $5600, I had already maxed it out. In one single prescription. All that waiting and fighting for one freaking month of drugs. I was frustrated already, and it was just the beginning.
I started taking the prescription, and the drug access coordinator at the hospital helped set me up with a program to reimburse my co-pay’s and full out pays for the drug while helped get me registered for Trillium drug coverage, which would take a couple of months. She was great. I must have spent hours on the phone with her trying to iron everything out so that the debt load of these drugs, I now had to take forever, wouldn’t bankrupt us. She understood.
The Side effects for people on TKI’s are varied depending on the drug and dose. I had prepared myself for a rough few first weeks, as most of the people had told me at group that adjusting the drug in the beginning would be hard. They were notwrong. The headache behind my eyes was so intense I could hardly open them. Sometimes it made me intensely nauseous. I was exhausted physically, like my body had become a sack of bricks I was simply dragging around. I got sores in my mouth and terrible teenage acne like I was suddenly 12 years old. I went back to work after a week of adjusting but it was hard. Slowly over the first 3-4 weeks the symptoms began to gradually lessen, and I started to feel a bit more like myself.
After the first month my counts had drastically improved. My doctor was pleased at the great early response. We continued with the standard 100mg/day dose and continued to hope the great response would continue. We were surprised when a month later, the drug appeared to be working so well, that suddenly my counts were below normal. We lowered the dose to 50mg a day and continued, but my counts kept falling. We then held the drug for two weeks when they became lower than my doctor was comfortable with, and resumed at 50mg, every other day. I was experiencing lots of bruising from low platelets, it was hard to miss. My chest, arms and legs were covered in them, and my doctor struggled to understand why the side effects of the drug were so different than the typical. My platelets were low, but they weren’t so low I should look like I got caught up in the middle of a bar fight all the time. It was puzzling.
By this point I was beginning to grow concerned. I had been reading various forums and studies about the possibility of myelosuppression (low blood counts) in the treatment of CML with Sprycel. It was listed as a common side-effect, but typically corrected itself within the first few months, once the leukemic cells had begun to die off, and your bone marrow was less overwhelmed. My doctor also was concerned that a few months and several dose reductions into treatment, things had not yet stabilized. She had referred with a colleague about the course of my treatment and he had encouraged her to keep pushing forward with the drug. That sometimes people took a bit longer than usual to adjust. So, we continued to wait.
Before I was diagnosed, I had gotten a 23andme kit for Christmas that I had sent in, and sometime after starting treatment I had gotten the results. Interested in all things genetic now that I knew my genes were defective little buggers, I wanted to know more than just ancestry. Once I had my genome as a file, I sent it to a company who provides detailed medical reports based on your genetic composition. One of the things they had found, immediately caught my attention. I possessed a genetic combination that made me a poor metabolizer in the CYP3A4/5 channel of my liver. I knew from reading things about TKI’s, that they were all processed mainly by that channel.
I took the information I had found to my doctor, and together we looked it up and came up with a theory that perhaps my inability to process the drug properly was leading to toxicity, even at low doses, which was causing the prolonged low counts. When the 50mg every other day resulted in another stoppage, I started to get nervous. Good responses to TKI’s happen early, and deeply, when the drug works as designed and can be delivered at the full dose, continually without interruption. They track your response based on a set of internationally accepted milestones that your doctor is aiming to achieve by the 3, 6 and 12 month marks. I had already missed the 3 month mark and we couldn’t even find a dose that I could tolerate safely yet. Why wasn’t this working for me?
We waited for my counts to come back up again before starting the drug again, and it seemed like each time had had to stop, it took longer and longer for my counts to recover. We lowered the dose again, to 20mg a day, just a tiny bit less than 50 every other day. It seemed to work at first. My counts started to drop but slower, and would plateau every now and then making it look like things were starting to stabilize. At the end of July, almost 5 months into treatment, when my monthly check up showed my counts had plunged again, and we had failed to make any ground in getting the leukemia under control, we withheld the drug again, and she referred me to the specialist she had already discussed my case with: Dr. Lipton at Princess Margaret.
I had already met Dr. Lipton once before, and perhaps that was what made the uncertainty of the situation feel even a little more comfortable. Sometime in May of 2017, a few months into treatment, I attended a Canadian CML Network conference, where people from all over Canada with CML get together for a weekend meet, mingle and geek out over all the crazy science going on in our bodies. It was wonderful. Dr. Lipton was the guest of honour at the conference, and many people spoke about how he saved, and changed their lives; How his bravery, research and understanding of a disease that many other doctors turned a blind eye to was what saved them. I had the chance to hear his keynote the next day and was blown away by his compassion and understanding of the complexities of an illness I was still struggling to understand.
The first time I went to Princess Margaret, it was overwhelming. I went alone, because I had convinced myself it was no big deal. That we were just going to switch drugs and everything would be fine. This guy was the master of CML. He had treated hundreds and hundreds of cases, been a part of tons of studies and knew all the ins and outs. If anyone could fix me, he could.
I met first with another doctor Dr. Macnamara, and for about an hour and a half we did a detailed family history and I answered an onslaught about specific questions. I could tell by the things I was being asked, they already had an idea of what was happening, and they were trying to gather up enough information to make an informed decision about how to proceed. She wanted every detail, in order to rule out all possibilities. After she left, I waited in the room for about a half hour, before she joined me again with Dr. Lipton.
He was friendly, but pretty quiet. He sat across from me and asked more but different questions. In between each one, he would pause, while staring at me as though he was weighing the response in his mind before asking another question. I could see the wheels turning.
After a while, he explained to me what he thought was the problem. He thought that perhaps I had some platelet aggregation issues causing the extreme bruising, and wanted to run some tests to rule that out. In regards to not being able to tolerate the drug, he said that some people took a long time to adjust to the drug, or couldn’t tolerate a full dose. He explained that in some cases some people’s marrow takes a long time to ‘wake up’ after it’s been dormant for so long, while being overwhelmed by the PH+ cells. In other cases, your body can’t tolerate the way the drug operates and the result is hematological toxicity. In either case, the inability to take the drug long enough without interruption, and at a dose high enough to have results had left us without knowing for sure whether the drug could work for me.
He explained that all TKI drugs have the same mechanism of action, and that if we couldn’t get this drug to work for me, that drugs would effectively be ruled out as a treatment option, because they would all cause the same myelosuppression. He wanted to try an approach called titration, where I would wait for my counts to return to close to normal, and then we would try the drug again, at an even lower dose, and slowly try to wean my body onto it. If titration didn’t work, we could have to talk about a bone-marrow transplant.
I tried to let myself skim over the bone-marrow transplant option, and mostly soaked in the news that I would get to spend the next 4 weeks, in beautiful august, drug-free while I waited for my counts to come back up. It ended up actually taking closer to 7 weeks for them to recover, and when we finally started the Sprycel at 20mg a day, three times a week, I held my breath.
At this point it was September 2017, it had been 6 months since I started treatment and my leukemia was still essentially running around unchecked. The limbo of going to the hospital every 2, 3, 4 weeks was beginning to wear on me. I started to wonder why my experience didn’t seem to fit with my girlfriends from CML group who were taking the drugs, and doing pretty good. It was getting hard to plan my life around the uncertainty of knowing whether this was going to work.
During the next two months my counts dipped, but not as bad. Then they seemed to stabilize a bit. In mid-October We increased the dose to 4 times a week, and they dipped again, but stabilized. The limbo was killing me, and at one point I tearfully demanded a bone-marrow transplant, afraid that they were missing something. That the drugs weren’t working and I would die of this cancer. He understood my fear, and I could tell by the small smile on his face, he knew that I didn’t even remotely understand what a bone marrow transplant fully entailed. I had researched it a bit, but not much. It mostly just seemed like some chemotherapy, no big deal. I could handle that. I now humorously know, that no one who actually understands what a Bone Marrow Transplant entails and has the option to avoid one, goes about demanding them. He knew that. So he gave me a bunch of scary reading material about transplants to read, and told me to stick with it. He wasn’t giving up on the drugs yet, and I shouldn’t either. In the meantime, I should research what transplant really meant.
I went home and did just that. I was beginning to fear that ultimately this attempt to wean me on to the drugs would fail and I would need a transplant as he had mentioned, so I wanted to know that that really meant if it happened. I read all the booklets, I reached out to a few people who I met at CML group that had transplants, and what they told me was unsettling. That it was a chance to survive, but with high risks, and sometimes at a high cost. It was a completely different and more involved procedure than I had ever imagined. Suddenly I was terrified.
I was grateful the next month that it looked like my doctor had been right. For the first time in a year, now almost 3 months on the drug without having to stop, my counts looked like they were starting to creep back up into the normal territory. It was December 14th, and I hoped that things would return back to normal in the new year I could finally have my life back. My heart swelled with a bit of hope for the first time ever. Then he handed be the form. It was a form for my siblings to fill out to be tested for a transplant.
He told me that my counts were promising, but not promising enough. We were verging on a year of me having leukemia that hadn’t been truly treatable. While I was starting to tolerate the drug, it wasn’t enough to keep the cancer in check. If my counts didn’t improve vastly in the next month, we needed to be prepared to act quickly to reduce the risk of it progressing into a stage that they would have trouble controlling, where a transplant wouldn’t be viable. He was starting to think that perhaps my bone marrow never woke up at all, and that I was living on PH+ clones only, with my body making a limited amount of new blood. If that was the case, I would need a transplant regardless.
Christmas was hard. I prayed for a miracle. On January 9th, 2019, I got one, but not the one I was hoping for. A 10/10 Match had been found for me in the donor database, and we were going to proceed to transplant if I was ready. I would attend meetings the following week with the transplant team as well as attending a transplant class, that would prepare me to make the decision about whether or not to move forward.
At the meeting, they told me that uncontrolled CML has a survival rate of 3-5 years, and that I had already been at least a year. Without the transplant I would die. With the transplant, I had a 50% chance of surviving the first year. After that my odds would increase. They also told me that acting quickly was within the best interests of ensuring I would be healthy and able to have a transplant, since unchecked, my cancer could progress any time. Due to the lack of information about the effect of Dasatinib on your eggs, they told me preserving my fertility could add a 3-6 month wait before my transplant that could still result in an unviable pregnancy. They urged us to move forward and focus on saving my life. It was the easiest, hard decision I’ve ever had to make.
I am schedule for a Bone Marrow transplant March 28th, 2019.
Click here to read my Transplant Diary!
Click here to check out my Counts from the date of diagnosis