The Diagnosis #CMLWarrior
This article was originally published on my personal blog McAuley Musings.
In April 2016, my routine bloodwork came back with high white blood cell counts. I was retested and the counts were even higher. Armed with a copy of my bloodwork, and obsessions with Google and Grey’s Anatomy, I could make a pretty good guess of what my diagnosis was even before we were told. It didn’t make it any easier.
On July 26, 2016, four months after our Arizona wedding and one month to the day after our Connecticut vow renewal, I was diagnosed with Philadelphia Positive Chronic Myeloid Leukemia (Ph+ CML).
Before the final diagnosis, the hematologist said she was sure from the bloodwork she had in hand that it wasn’t a worst-case scenario. What I had was manageable, likely treated with a pill.
We breathed a sigh of relief knowing that it was likely still Leukemia but in a form that could be managed with a chemo pill. [The pill called Gleevec, or the generic imatinib, was the result of research by Dr. Brian Druker featured in Triumph in the War Against Cancer.]
Manageable or not, I was told that I had cancer, a chronic, slow growing form of cancer.
Ph+ CML is caused by nothing more than a couple of chromosomes exchanging material and forming a short chromosome they call Philadelphia. That chromosome creates an enzyme that prevents my body from killing off bad cells. That means the bad cells stay and, if left untreated, will take over other parts of my blood and eventually my entire body. Pretty scary shit. [Check out this patient information on Ph+ CML from Gleevec.]
There is nothing I could have done to prevent this and nothing except taking a pill for the rest of my life would keep me healthy.
My husband and I got on the phone calling friends and family as if we were volunteers at a telethon. Call after call.
Yes, I am going to be okay. It’s manageable.
Chronic means there is no cure.
Life expectancy is the same if I take the pill every day, no exceptions.
I just need to get a bone marrow biopsy and CAT scan and then I can start the pill.
We don’t know why this happened.
Yes, we’re lucky they caught it early on routine bloodwork.
I could say all of these things and for a few days I even fooled myself. How could I not pretend everything was okay? My stepsons were visiting and no one wanted to hear bad news or see me melt down.
Instead I cried in the shower.
I cried for the life I had before diagnosis.
I cried for my mother who lost her 22 month battle with breast cancer in 1995 at the age of 46 years old.
I cried. Not like at the end of a sad movie but the kind of crying when someone you love dies. The kind that shakes your whole body and wears you down. I did it alone in the shower and I wondered if my mother had done the same when she was diagnosed.
Yes, there are too many cancer cells in my body and it’s scary to think about for too long.
I probably won’t lose my hair. It might even go back to it’s pre-gray brunette.
Yes, there are side effects but the doctor said her patients don’t get severe symptoms.
Yes, for the rest of my life I have to take this pill unless there is a better option or a cure.
I called my friends, Sisters with Blisters, who had walked 60 miles in three days with me back in 2004 and 2005 to raise money and awareness for breast cancer research. One of them thought I had breast cancer. While she was relieved it wasn’t, she became what she always is in a crisis, the big sister. She said to sign her up for whatever I needed and send her a t-shirt in the color we wore for my cancer. She, and the rest of the old team, are ready for a battle.
Today is August 2, 2016 and my inner warrior is tired. She’s exhausted from talking about it. She’s tired of being tired. The bone marrow biopsy put her — and me — over the edge. My body is more tired every day and I can’t wait to start on my chemo pill. I never thought I’d say that but it’s the truth. UPDATE: I started my chemo pill Gleevec on August 17, 2016.
Here’s what sucks
It’s cancer and it’s chronic. There are people who go through much worse than what I am but they get to say they’re survivors. They get to say they’re free of cancer. They get to be treatment-free. Even when I go into “remission,” it will be because I am taking a pill. There is no cancer-free unless there’s a cure. And I am so fucking tired that I nap at least once a day on most days. I can push harder but I pay for it the next day.
I have a gym membership that’s getting little to no use. UPDATE: I went to the gym on September 1, 2016!!
I hate needles. I hate blood. I hate that my blood needs to be tested every 4–6 weeks to see how it’s doing. I hate that even in “remission,” the cancer could still come back. UPDATE: I had a port placed to make blood draws and IVs less traumatic. That means less bruising and that’s good.
I hate that my father has to go through another woman in his life having cancer.
What Doesn’t Suck
I have a loving and supportive husband who is balancing career, community service, and my cancer with grace. I couldn’t have asked for a better partner and don’t know what I would do without him. We were married on March 13, 2016 and this isn’t the life we had planned. And that sucks but we have each other and we’re in love. Just ask the nurse at the surgery center who caught us kissing before I went in for my biopsy.
Community — We have friends and family supporting us in ways we never would have imagined. From meal trains to donations to Team McLopez Light the Night Phoenix, to prayers around the globe, dogsitting, housecleaning, and reconnecting with old friends, this has brought our community together.
It IS manageable. In my moments of clarity and gratitude I am thankful we’re dealing with a cancer that is treatable, even if it’s not curable.