One day in January 2011, I made it to work and after about an hour and a half could not even stand up without wobbling so bless her heart, my boss sent me home.
That night I was trying to sleep but I had immense chest pain. I couldn’t take a deep breath at all. I was in such discomfort that I woke up my dad to find his Tylenol but he didn’t keep any in the house, so in the middle of the night we got in his car and drove to the emergency room in a small town nearby.
We were there for 6 hours until I finally saw a doctor who did an ECG and routine blood tests and he delivered the bad news. They had found an anomaly in my white blood cells and I needed more testing. It didn’t sink in right away. I called my boss (who I sidebar had a very special relationship with) and told her they had to run more tests but that I thought I’d be back on Monday(!).
This was not the case. When we met with the oncologist that day, he told me I had leukemia and needed chemotherapy. I had three days to go home and pack a bag and then basically not expect to come home anytime in the near future. During those three days I was falling asleep everywhere: on my Nana’s very uncomfortable mattress, on lounge chairs mid-conversation, and even on my dad’s shoulder 30 minutes into my sister’s theatre production.
On February 1st, 2011 I started my first ‘induction’ treatment. They are administered treatments of chemo for 24 hours a day, for 7 whole days straight. I was weak, I had nose bleeds, I lost my hair and lost 30 pounds in 10 days. The first treatment didn’t work, and death became a glaring potential reality. Life — or death — got really real really quickly. They consulted another hospital to come up with a different ‘cocktail’ of chemo drugs that would hopefully knock me into remission, and it worked. On February 15th, I had no evidence of disease. But the battle didn’t stop there.
Chance of relapse was so high that I had to get ‘maintenance’ chemo, three times a week on Mondays, Wednesdays, and Fridays, for 3 months until they could find me a stem cell donor who would hopefully cure me for good.
I had consultations at Maisonneuve Rosemount Hospital, the leader for stem cell transplants in Montreal. They have a floor exclusively equipped for stem cell recipients and have a whole team of oncologists, hematologists and stem cell specialists.
I had all kinds of complications in the hospital including but not limited to two episodes of e-coli, a sepsis infection, mouth warts called mucositis which were torn apart by my braces of the time, damage to my heart working at a reduced percentage and many minor fevers and lots of nausea.
My brother and sister both got tested to see if they are a match. Siblings have a one in four chance of being a potential candidate for stem cell transplant and these are the only family members that can be tested specifically for a particular recipient. My brother was not a fair match, and my sister was, however her previous lymphoma 8 years prior put me at 70% chance of relapse of a blood cancer within 5 years (if I remember correctly), so an anonymous donor was my best bet.
So we’re now July, and they’ve found an anonymous stem cell donor. This donor for the allogeneic transplant would be donating to potentially save my life. They explain that I have to do another induction treatment, this time of 10 days starting at day minus 10 counting down to day minus one, then zero which is transplant day. And every day after that they count up. On day 100, if I am still NED, the transplant is considered successful. Day zero was August 26th, 2011 and here I am December 2011 completely bald at around 100 days post-transplant.
There were more complications in the hospital after the stem cell transplant such as a gall bladder with over 30 stones infected to the point of gangrene that had to be removed and post-transplant diabetes which extended my hospital stay (in isolation with no human physical contact) to about nine and a half months.
For the 100 days I was on all kinds of steroids to combat GvHD, but this never was an issue for me. The transplant was successful, and now I could take a deep breath. I wouldn’t find out who my donor was until two years later. They asked if I wanted to exchange information. Not even my Drs knew who it was. They turn your name into a code of numbers and letters so both parties are completely kept anonymous to everyone. I said I do, and in December 2013 I was told that my donor had consented too and that I would be emailed the coordinates in the next week.
Now, my family had speculations about who this donor would be: some young male, living not too far, since the genetics had to be so similar that he was likely my ethnicity and living in Canada or the US, and that he would later become my husband and it would be a love story for the books.
At the time I received the coordinates I was just about to fly to Orlando, Florida to run my first half-marathon in Disney World with the Leukemia and Lymphoma Society of Canada. I sat on it for a few days and wrote her from my hotel room in Disney the afternoon after my run. I can’t remember exactly what I said, and I wish I still had the emails, but I know I profusely thanked her for saving my life. I know there was a lot of people in that equation, doctors, nurses, researchers, and the lesser gratified but equally important blood and platelet donors and many more, but the gift this young ER nurse gave me of stem cells was the cherry on top, my ‘raison d’être’ and I am forever grateful. She wrote back that she was pregnant with her first child and I was over-the-moon elated for her and her husband. She is now pregnant with her second child and I am again, over-the-moon elated for her and her growing family.
No, I didn’t get a husband out of this, but I got a new lease on life and I have a very special bond with my stem cell donor today. One in twenty-three million! It is absolutely a story for the books.
For those of you interested in being on the registry for bone marrow donors, I hope these stories have enlightened you. Here is the OneMatch website suggested by my donor that she found the most helpful. A sad part of this story is after my maintenance chemo, while I was living at home waiting to find a donor I had a nurse visit me. She did blood tests, brought me my medications, and changed my dressings for my catheter. Her son, a survivor of testicular cancer has just recently been diagnosed with my very cancer, AML. He is looking for a donor. I never gave blood before leukemia, and now thanks to AML I never will, but if you are healthy and are up for the challenge I strongly recommend you register. All it takes is a cheek swab by mail. And if this is not for you, fret not! You can still donate blood & platelets and/or raise awareness in your community.
Love always and forever,