October Stirs Up Memories of Blood Cancer Diagnosis

When October comes, many people associate it with pumpkins, beautiful foliage, or even football games.

For me, October is significant for other reasons.

No, it is not because it is my birthday during that month. However, I do have a different perspective about birthdays these days.

Diagnosed during October

It was October 2014 when I was diagnosed with chronic myeloid leukemia, a rare blood cancer that happens when chromosomes 9 and 22 translocate to form the abnormal BCR ABL gene.

So, this October I am trying to look back nine years ago to that day when my life changed forever. My brain has blocked out parts of that time while a portion of it allows me to vividly remember the important stuff.

Meeting with a CML specialist

I had an inkling in September from my first oncologist and testing that there was the possibility I had leukemia or another bone marrow disorder. At that time, my records were transferred closer to where I had moved the year before and where I was to be assigned a new hematologist/oncologist at a large medical school campus with a cancer center.

Early in the month, I received a phone call from the doctor’s office with the secretary telling me I was a very lucky person because my new cancer caregiver was head of the leukemia department as well as a CML specialist.

It is rare to have a CML specialist on staff because it is not that common a form of leukemia and some patients must travel across state lines to meet with a specialist of this type.

Feeling weak, tired, and weird

In the middle of the month, I was a bridesmaid at my friend’s wedding. I remember when photos were being taken feeling very strange and almost dizzy. When I started to feel weak, tired, and weird, it reminded me I was facing a possible serious diagnosis. The thoughts transported me temporarily out of the event.

Later in October, accompanied by two other friends, I had my first visit with the hematologist/oncologist. I have told the story many times of the three hours I spent listening to scientific information about genes, chromosomes, bone marrow biopsies, oral targeted treatment drugs called TKIs, and a whole lot more.

Information overload overwhelms me

Not only was this scientific lecture accompanied by his scribbling drawings and charts, but it was far too much for my brain to absorb in one sitting.

After a while, I developed a raging headache. It was late in the afternoon and the doctor mentioned I could have a bone marrow biopsy then and there to confirm the CML suspicions and give clues to my prognosis going forward. I refused, saying it would have to be done another day.

“You're making my head explode,” I told the doctor, preferring to hightail it out of that office and try to absorb at least some information. I also said I was a busy woman with a lot to do and I could not be running back and forth “every minute,” to have all the frequent blood testing he said I must do.

I added I did not want “God awful bone-crunching pain,” from a bone marrow biopsy and what was he going to do about that.

Holding back the tears

Nine years later, I wonder what my CML specialist was thinking about me that day. I was certainly belligerent but not upset or crying, just cocky. In fact, I have never cried in his office or in front of him, although I did tell him once about crying in the car early on because I hated waiting a week for BCR ABL test results. Too stressful.

He appeared sympathetic and told me he would try to get the results of how much leukemia was showing in my bloodwork quicker if possible. "I don't like the thought of you crying in your car, Susan."

Anyhow, we made plans for me to return the next day for the biopsy and when I made it out to the waiting room, that is when I cried. One of my friends was with me in the office while her husband waited outside.

When I saw him, I lost it. I apologized profusely for having to come back the next day but I just could not take anymore. I quickly recovered my composure and went home.

The biopsy confirmed CML and my first TKI treatment began. All in October.

Birthdays hit differently

I suppose by the end of the month mostly everyone in my circle learned what was going on from me. I’m told I primarily called people on the phone to deliver the news. I really cannot remember the details now.

What I do remember is thinking that my October birthday would be my last.

Obviously, it wasn’t. That’s why when birthdays come and go, I don’t worry about getting older or any of the things some other people do about aging. I just regard each October birthday as amazing and unexpected.