Countdown to Transplant!

Hello all you awesome allies,

I can’t believe how long it’s taken me to write this update. I found it more difficult than past ones. It seems as though every time I feel well enough to write, something veers me off course – unexpected side effects, paperwork, etc. I’ve been down the rabbit hole and back again since my last post – I’ve shaken the dream and processed some things, and feel prepared to share again.

Enough with the excuses, here it is!

My care has officially transitioned from the Complex Malignant Hematology Unit at Sunnybrook to the transplant team at Princess Margaret Cancer Centre (PMCC). I’ve been admitted, and lucked out on getting one of the bigger rooms with an exceptional western view of the city and snippets of the waterfront. The staff refer to the big rooms as the “suites”, which suits my own vision for my stay here. I have managed to do enough mental gymnastics to convince myself that this is a meditation retreat. A leukemia cleanse. I have my yoga mat and there is a stationary bike I can pretend I’m riding through the city on. It’s a ritzy rehab for my immune system!

Despite my wilful fantasies, I have to recognise that the process for a stem cell transplant is intense, thorough, and sometimes jarring. I had to take a course prepared by PMCC that walked me through everything from the actual stem cell infusion, to the many risks and potential complications, and even aftercare, which includes countless lifestyle and dietary restrictions. The goal is to return to life as it was, they say, but it’s a long journey ahead. I’m now on another round of extreme chemo for five days, called “conditioning”, that strips my bones of all the marrow cells. The day I get my new stem cells is called “Day 0” (May 28th), and the days following, like “Day 30” and “Day 100” are important milestones for me to reach. I will be unable to return to work for at least a year after the transplant – my transplant coordinator said that I will have to celebrate my “first birthday” before I go back. When I first set out on this path back in February, I had hoped I would only be incapacitated for a few months to a year in total. I had also hoped that after that year, I would bounce back like a cat that can withstand such a fall. Now I know that some complications could affect me later, and I’m twice as likely as the average person to get a secondary cancer (these chemo drugs are no joke). While I have adapted to this new territory, I do continue to be surprised by the tougher news as it unfolds. I keep hoping to round the corner and find home, but instead, I find a longer path through the woods as it grows dark. I’m not afraid of the dark, I just look forward to feeling home free, and I don’t know if I ever truly will.

My transition from Sunnybrook to PMCC has been relatively smooth – I will miss my Sunnybrook caretakers, but the ones here are already wonderful. The food is a bit better as well, but my overnight nurse said that she has heard the opposite, so we’ll see. The main difference I have found is that my care providers at Sunnybrook were so focused on the positive, they left no room for what-ifs. They also didn’t mention survival odds or my scarier mutations. Here at PMCC, everyone seems a little more realistic, which I now find reassuring. When you need a stem cell transplant, it’s because nothing else is going to work. They acknowledge the challenge because this is the team you turn to after you’ve already exhausted your options (in my case, because of others before me, we knew that my mutations mandate a transplant).

I first met with the team a few weeks ago, and then they had to bring my case forward to their committee of twenty other doctors for approval. During this meeting with my transplant team, I was informed that if I pursue the transplant, I will have a 50% chance of survival over the next two years (this seems better than the AML survival rate of about 20% over the next five years, so I’m all for it). To be confronted by this stark reality, even with better odds, caught me off guard. I had assumed my odds would be better, given my youth and minor comorbidities, but the doctor said that these are actually considered good odds. My AML is considered high risk, they informed me. Because of the FLT3-ITD and other mutations (RUNX1, CEBPA, DNMT3A, WT1), they knew my transplant would be approved unanimously, and it was. The excellent news is that there were five 10/10 matching donors for the team to choose from, which makes the transplant safer and more likely to work than a lesser match.

I’ve had some time now to sit with this all and indulge in a scant few days of slothful contemplation… and to be honest, I will need many more. Especially because the last month has been a whirlwind of appointments and procedures, now that I am formally approved for the transplant. My spirit felt poised and ready to charge again, but my joints felt arthritic, my hair and nails were falling out, and my blood counts hadn’t recovered from the second round of chemo. One reason why I handled my diagnosis so well in the beginning is because I knew that things would only get tougher, and now the time has come.

The past few weeks flew by, and now I can say I am armed and ready for the part of my journey that is bound to be the most strenuous. A couple weeks ago, for instance, I conquered the dreaded bone marrow biopsy! They freeze the skin and hip bone, then pierce it all with a large needle to perform the aspiration, which collects bone marrow fluid. Then a chunk of the bone and marrow is taken. Calm and steady (only one little groan escaped), but also quite sweaty, I slayed that jabberwock! Now that I have finally managed to endure this procedure with more grace than before (I swore throughout the first two – it’s supposed to help with the pain), I fully intend to keep slaying them. I have now had three, and there will be more, as they are a semi-regular means of monitoring the status of my leukemia as we move forward with treatment. I also took on the lumbar puncture, which was a much easier procedure to endure. The side effects, however, were crippling back pain and a headache for a week after, if I did anything other than lie flat on my back.

Because my leukemia cells have those mutations that make them particularly aggressive beasts, even after transplant, there is a 30% chance of relapse (I may even need another transplant at some point). The recent bone marrow biopsy showed that there are still 3% blasts in my marrow. While this is considered to be a state of remission, the fact that they were detected is not ideal. This means that my treatment has to be just as aggressive in return.

The doctor’s strategy is to unleash the full power of the new immune system a little earlier than planned, so that it can get to work and kill off those residual leukemia cells. When I get the donor’s stem cell infusion, there is a risk that these new cells will see mine as foreign and attack them – this is called Graft Versus Host Disease (GVHD). Typically, the liver, lungs, and skin are impacted the most. They give me a few medications to prevent severe GVHD. However, one of the benefits of the stem cells is that they are also inclined to destroy the leukemia cells, so there must be a balance struck between encouraging them to kill those bad cells while also keeping my good cells intact! The best way for this to happen is to stop taking one of the GVHD prevention meds earlier than planned. The donor’s stem cells, uninhibited, can then kill off the leukemia cells, hopefully with reckless abandon. This does mean that the GVHD could flare up, but this is a small price to pay for survival. When my time in the hospital is done, the regular blood work and bone marrow biopsies will help determine if the AML does return. If it leaves me be for five years, I can consider myself out of the woods! It’s one foot in front of the other until then.

Yesterday, my first day as a patient here in the stem cell transplant unit, I overheard a nurse say to a patient: “I don’t know how to tell you to not be scared, because you should be scared… but I don’t want you to worry. We know it’s there, and we’ll keep an eye on it.” This was referring to a blood clot, but I felt like it was just as relevant to my situation. Here at PMCC, I am in the best hands possible. While this might not be the resort of my dreams, I have a phenomenal view of this great city I call home, and a path forward that will lead me back to all of you. Once the pandemic is over, and we’re all vaccinated, that is!