The Truth about Living with Chronic Myeloid Leukemia
This post was originally published on my personal blog McAuley Musings.
truth is that I have good and bad days. Last week was filled with bad days and this week was four pretty good days in a row. That’s probably my longest stretch of good days in months, even pre-diagnosis. I’ll take it.
The truth is that I thought I had no symptoms when my routine bloodwork came back with high white blood count.
The truth is that I was exhausted but thought it was from running Blogging Badass while planning a wedding.
The truth is I now know why I was so tired after my gym workouts.
My body was doing overtime because my bone marrow was spitting out immature white blood cells at an alarming rate.
The truth is I have Philadelphia Positive Chronic Myeloid Leukemia (Ph+ CML) and there is no cure.
I take a pill everyday until there’s a better solution or a cure. We know the cure is close. #somedayistoday
The Bad Days
You will probably never see me or my husband post about the bad days or the ugly moments on social media. It’s not who we were before cancer and definitely not after the diagnosis. The reality is the bad days leave me too tired to post anything and he’s too busy caring for me and our life to look at Facebook, much less add a note.
What’s a bad day like?
It’s always changing but in the first two weeks, here’s what I’ve experienced:
• Two conscious sedations — one for bone marrow biopsy and one for port placement
• One CAT scan.
• Four (five?) blood draws and four IVs.
• One surgery center and one outpatient hospital visit.
• Near daily nausea on varying levels and other GI issues.
• Five days in a row of headaches.
• Jaw and gum aches.
• Joint pain that made me feel at least 20 years older than my 43 years.
• Blurred vision, watery eyes.
• Brain fog, dizziness, and forgetfulness.
And the best part is that I have the “boring” cancer, at least according to one of my doctors. I can’t imagine what it’s like to be sicker. For that (and so much more), we’re thankful.
What’s good about my condition?
My red cells and platelets are healthy, like really healthy. My spleen isn’t enlarged and is, “one that most CML patients wished they’d have,” and my other organs are healthy. That means I have an excellent prognosis even though some days it doesn’t feel like it.
Philadelphia Positive Chronic Myeloid Leukemia (Ph+ CML) is manageable with targeted therapy. In my case, a chemo pill called Gleevec is killing the bad protein my body is producing which is enabling my good white blood cells to work to make me well.
Here’s a post I wrote about Ph+ CML diagnosis along with links to people way more scientific than me.
For all the bad days, I have already had glimpses of feeling like my energetic self.
We celebrate the good days. I have a list of people I want to see in the next few months and one by one I’ve been seeing them even if it means they have to come to me. We’re grateful for the limited number of bad days. We know the cure is coming soon.
Learn more about what we’re doing to fight CML and all blood cancers on our Team McLopez Facebook page.
