Meandering Thoughts
Officially, after several rounds of chemo, a stem cell transplant and a menin inhibitors on clinical trial, I’ve been in remission since November 2025. This means that there are less than 5% of cancer cells detected in my blood under the microscope. That sounds promising. But I’m weary. We get even better results one week later: “You have no traceable disease, or residual cancer cells, in your blood under the microscope with DNA testing.” This is amazing news! But it does not really sink in. Maybe they made a mistake? The cancer came back once (relapsed May 2025), maybe the cancer will resurge again! Maybe tomorrow they will find another problem! The whole thing started off so quietly (August 2024), with very few physical indicators, and despite a months long hospital stay (hôpital Sacre Coeur) it took a while to officially diagnose AML (October 2024.) And now that the treatments are over, I have to learn to live with this new reality: the constant fear of recurrence.
Why?
Do you ever think it’s something I did wrong that caused me to get cancer? I had a nice life with so many good things and all of a sudden they were taken away…
Traumatic. No more family life. Gone are the routines. Gone is the constant struggle for work life balance. Gone is the dignity of my physical body as tubes collect data on my temperature, heart rate, urine output, etc. The machines beep and shout out when things go wrong. Which seems to be often. Lying on my bed in my stark hospital room, with paint flaking off the walls, I press my call button. The orderly rushes in.
-What’s wrong?
-The machine is beeping.
-Ok. I’ll tell your nurse.
The nurse eventually strolled over, jiggles the line and turns off the alarm.
-Try not to move your arm.
There is a line into my arm for easy blood draws and administering medicine.
-Ok. I’ll just lay here without moving and stare at the clock on the wall. (But of course I don’t say this out loud.)
No one ever congratulates you for surviving.
Gone are the daily decisions about what to wear (a hospital gown), what to eat (yellow goop through a feeding tube). There are so many pills to take: big ones, little ones, tiny round orange ones, octagons shaped light pink pills, etc. A waterfall of pills to control the possible side effects of the treatment itself. I diligently gulp them down with a glass of water followed by spoonful of apple sauce. After a while, I no longer have the curiosity to ask what each of the pills are for.
I place my trust in the team of doctors, nurses, and orderlies to make the right decisions. And there is a formidable team working for me. Taking in all the information of my complex case, weighing the pros and cons of each pill, and medical intervention. I was informed that there is a team of specialists who individually study my particular case before they meet as a group to discuss the next steps. They each enter the meeting with their own idea and suggestions for the medical protocol. No one leaves the meeting until a consensus is formed and agreed upon by everyone involved. This way of practicing reassured me immensely. I could imagine the doctors, nurses, and specialist debating the what ifs of each pill and transfusion. Together we are all hoping for the best possible outcome.
“Mama your picture should be in this book. One of survivors. Granny too (my mother beat both lung and skin cancers.) Well, this book is for blood cancer. Ok. Then your picture should be there.” I hope so too, my dear.
So vivid! I can see it all in my head. Cheers to new beginnings! 🌈