In August 2019, I developed pneumonia for the third time in two years. I had been finding that my ability to fight off illness was not as good as it used to be. Once it got to the point that I was having problems breathing, I decided to go to urgent care. Two years prior, I had been hospitalized for pneumonia, and I wasn’t looking forward to it happening again.
I googled the nearest urgent care, and it was closed. There was only one nearby that was open, but I had never been before. I was the last patient at the urgent care, and they took great care of me. I was about to be discharged around 11:00 p.m. with steroids, an antibiotic, and instructions to go back onto my asthma medication when the phlebotomist pulled the physician’s assistant out of the room to consult. When she came back, she explained that I needed to call someone to come and take me to the nearest emergency room. She wanted me to be checked out for a pulmonary embolism just to be sure but also informed me that my white blood cells were about seven times higher than they should be. I distinctly remember her saying, “We don’t see that here.” And when I asked her who does see it, her honest (and appreciated) reply was “typically an oncologist, with leukemia or lymphoma.” I remember being shocked and in complete disbelief. I called my husband who was home with my sleeping kids and told him I wouldn’t be coming home.
Fast forward through a long night in the ER with my dad, an appointment the following day with my primary care physician, and another appointment that day with my new oncologist. I was sent for bloodwork, a bone marrow biopsy, and within a week it was confirmed that I had chronic myeloid leukemia (CML). Over the next month, I would begin treatment on a second-generation tyrosine kinase inhibitor (TKI) that I would take daily for the rest of my life if it worked appropriately.
The first year of treatment was difficult as my body got used to my medication. For a while, it felt like I had side effects after side effect, but eventually, they started to lessen. Although there was a small blip in my response to my medication, I have, for the most part, been responding quite well and am still on my first TKI.
Having CML has been an adjustment. As I finish up my third year of treatment, I find that living with CML is much easier. Side effects, although a daily part of life, is more manageable, and being able to live a full and active life with my 5- and 7-year-olds is not an issue.
Possibly the hardest part of having CML is coming to terms with the fact that I will likely have it for the rest of my life. I have hope that The Leukemia and Lymphoma Society (LLS) will find a way to eradicate CML, and I will once again be healthy. For now, my life is run by alarms and reminders. I have found amazing support and friendship through the CML support chats offered by LLS, and even though life gets busy, I always feel welcome when I sign back in. In my first year of treatment, I participated in the LLS Big Climb and have registered and participated in Light The Night all three years.
Hindsight being 20/20, I was able to look back and identify CML symptoms that I had been experiencing leading up to my diagnosis. Not being educated about the symptoms of blood cancer, I didn’t think anything of it. Now I am very vocal about having CML and share often on social media in hopes to educate others and increase awareness to help with fundraising to support LLS.
Leigh
Chronic myeloid leukemia (CML)
