Chapter 1

Hello you rockstar guardian angel friends, family, York family, etc.

Some of you don’t know how this began. On Sat., Feb. 6th at 7:30pm, my boyfriend Oliver and I were playing a card game and sipping on some wine, about to have an early celebration dinner for my upcoming birthday. Then my phone rang, labelled “No Caller ID”. Against my usual instinct, I answered, because that’s often my health clinic or family doctor, and I’d been waiting to hear from them. Just not on a weekend night in the middle of a worldwide pandemic. The specialist who’d done an endoscopy had said everything looked good, so I had dismissed my mild concern about cancer. What could this call possibly be about?

I hear my doctor’s voice tell me that I have to go straight to an Emergency department because the blood work (to accompany the endoscopy) I’d had done earlier in the week was abnormal, and indicated some kind of leukemia. I say “Okay, yes. Ah, okay, of course. Yes. No, it’s okay… We can go straight there, we’ll do that.” I turn to Oliver and say that I have some kind of leukemia and need to get to emerg to have more tests done tonight. Then the phone rings again. “Yes, hi… oh. Oh. Oh, I see. No, it’s okay, really. I’ll be okay. We’ll go now. So you recommend Sunnybrook, then? Yes, it’s close enough, we will leave now.” And then I have to tell Oliver that it has actually already been determined that I have Acute Myeloid Leukemia; we just don’t know the subtype. I stay calm, but go to the bathroom to look up what on earth this even means. The stats on survival rates being heartily discouraging, I choose to dismiss them as applicable to “those other people,” and I am content to march on, undeterred. I return to Oliver, who asks if I need a glass of wine. I say, “Yes. Yes, we better have another glass of wine, and then get a Lyft to Sunnybrook” – as though we were on our way to a friend’s dinner party.

Somehow, from the very beginning, I have (for the most part) remained as cool as a cucumber. Through MyChart, I have access to all records and reports, which is wonderful and helps me keep track of everything. The doctors’ notes comment on my demeanor – they say things like “She shows no signs of distress” and “She is remarkably mature and calm about this whole thing.” 

That Saturday night I was admitted to the Complex Malignant Hematology Unit at Sunnybrook, not realizing that I wouldn’t be able to go home for 4-7 weeks. That night, God/Spirit/Love (I will use “God,” but feel free to insert your own preferred term) was with me and washed over me, and let me know he was there and in complete and perfect abundance. I cried with joy at this beautiful awakening. I cried with gratitude for a life so fully-lived, I wouldn’t do it over again any other way. I cried for my loved ones, because I knew it would be devastating if I had to see them go through what I was about to go through. 

There are these little moments of melancholy time, anywhere between 4-8am, when I am with God and he lets these lovely little crystal tears roll down my cheeks and I feel such relief. I give space and time for processing my feelings and come out ready to face a new day of ups and downs in peace and with unwavering resilience. I believe I am experiencing this gift as God intended, and can only hope to come out of this a better, stronger person. At the very least, I will not let it change me for the worse. 

To this day, I continue to cry (not too much, not too little – just enough) for all of these reasons and another: for the support I am being shown by people my life has crossed paths with. People from many moons ago and more recently-made friends have all made their love known; so many people have reached out to show me that I am not alone in this. Please continue to keep sending these good vibes, prayers, and best wishes – I swear I feel it all, and am reveling in the love. It pulls me back up by the scruff of my neck every time I get knocked down by some new complication. 

Some people may have a hard time seeing this from my point of view, and still others will not believe that I purely see this as a gift and am soaking up the lessons it has already taught me. All I can say is that for me, this is my truth, and I intend to live it. 

Some of the many precious gifts I’ve received from friends are subscriptions to meditation apps. One of them had a notification pop up that was a quote of the day: “Is a problem still a problem if you don’t think it’s a problem?” I liked this particularly because I have been finding silver linings to almost everything I am going through, and can’t possibly see these challenges as anything but opportunities. 

At times, the pain or other symptoms have been SO intense, but my superstar Sunnybrook nurses and doctors have provided ways for me to manage all of this. The mouth pain was spectacularly unbearable and the pain when eating was a scorching 10/10 for weeks, even with serious painkillers and a lidocaine mouthwash, but that is finally on the mend and I have my fingers crossed that I can eat the (mild) Indian food that Oliver is bringing for dinner tonight. (Update: sadly, I could only have the mango lassie, but darn was it ever good!) 

I’ve been asked about how I can be supported during this time. My main request is that if you and your loved ones are healthy, willing, and able, please donate blood and platelets! I myself have often been too anemic to give blood, and was only successful twice. My current condition has already required about six blood transfusions and four platelet transfusions, so if there is one way you can help me attempt to pay this gift forward, it’s to “raise a toast” to me at a blood bank. Bone marrow transplant donation is more complicated, but it can be as easy as a cheek swab and blood donation.

I would like to report to you all that even at my most feverish, weak, and painful moments, this AML has not gotten the best of me. My joie de vivre is intact, and I try to catch every little glimpse of beauty hiding in the periphery of this experience. I know I may not always have the energy for this, so I am doing it while I can. I have overheard many a roommate meet their breaking point already, and I am not sure what mine will be or when it will happen, and I want to fend it off for as long as possible. 

I treasure the exquisite moments of human bonding with my caretakers, who are so precious to my healing. We share moments of dignity in vulnerability, and it goes both ways! I had a nurse share a funny story that had to do with the same vulnerability that I was experiencing that day. We laughed together, and I knew that our little bond was going to be one of many threads keeping me connected to love and light. 

Well, now that you know how it began, I would also like to share some excellent news about how my first hospital stay (of potentially many) is coming to an end! I was admitted Feb. 6th, and am now looking at a release date in the next week or so. I will get to go home for a couple weeks’ break, and then return for chemo on an outpatient basis afterwards to prepare for my bone marrow transplant. They have found a 70% match for me, which is wonderful news. 

Perhaps the only thing this AML will take from me (temporarily) is my love of blue meat and plants/flowers. I like my steak still mooing, and one of my more convoluted nicknames is “cloud-hopping, flower-sniffing dirt fairy”; with such low white blood cells, I must avoid all meat that isn’t well-done, and avoid all houseplants, dirt, and flowers. While previously considered essential to my identity, I know I can forego these little things until I am in remission. What a small price to pay for such an incredible journey, I say. 

All my love and gratitude, 

Alex

P.S.: Here are some links that were shared via Facebook by my family earlier this week 

For tax deductible donations, you can directly donate to the department that is caring for Alex at Sunnybrook: (https://donate.sunnybrook.ca/champions-of-care), select: Department: Other > Other: K3C (Complex Malignant Hematology Unit) > Caregiver Name or Care Team: Complex Malignant Hematology Unit Team

You can also donate to The Leukemia & Lymphoma Society of Canada https://www.llscanada.org/

Information on donating blood, plasma, stem cells, or financial gifts can be found at: Blood.ca