December 8, 2018, marked the one year anniversary of my diagnosis of Acute Promyelocytic Leukemia (APL). Removing myself emotionally from the situation it’s really quite fascinating. I was sure it would be an emotional day for me, and it was, but not the way I expected. In fact, the emotional rollercoaster started about three weeks prior on November 18th. That was the first day, one year ago, that I felt something wasn’t right. I questioned myself a lot on that day, this year, about why I felt the way I did. I felt…angry with myself for not recognizing what was happening sooner. Logically, I realize that is a completely unfair self-criticism. Based on a bit of odd mid-back pain, who would think such a thing. Many days following November 18th, I awoke first thing in the morning to vivid memories of what happened on that day one year prior. November 23rd, 2017, I had gone to the gym, then the grocery store, followed by home to bake Christmas goodies with one of my daughters when I started experiencing what became a locked muscle in my right hip. On December 5th – 8th, I felt anger at the memory of knowing something was wrong but I was being misdirected, mistreated and downright disrespected by the multiple medical professionals I tried to raise my growing concern with. Putting things in perspective, my actual diagnosis day was a blessing in disguise. What if I had taken the same position as my (former) doctor and her medical staff who clearly weren’t concerned about the severe reaction I started having only 24 hours after taking a new medication? What if I had let that triage nurse dishearten me so much that I was willing to go home and reluctantly not see a doctor about my multiple bruises, breaking blood vessels and excessive bleeding?
Simply put, I would have died…quickly.
I’ve tried hard to maintain the attitude of gratefulness. Simply being grateful to be alive. Grateful to have experienced all of the positive outcomes of such a horrific year. Despite my efforts, I can’t help but feel angry. According to an article written by the National Centre for Biotechnology Information, nearly 30% of people diagnosed with Acute Promyelocytic Leukemia die either prior to treatment beginning, within the first 3 days of treatment, proceeding the first 3 days of treatment or in the moderate to high risk group. What it boils down to is, the time from onset to mortality is very short and the symptoms of leukemia can be chalked up to anything from overexertion in day to day life to the flu. Before you know it, it has advanced beyond the point of a body’s ability to handle the treatment or protect itself anymore. I am within the high risk group and can’t help but wonder if I would still be taking maintenance medication had my doctor taken my concern seriously the first time I called. We already know I would have been dead within 24 hours from the time I was diagnosed, if I had not taken myself to the hospital and fought with that triage nurse.
If dealing with all of the above isn’t hard enough, I started Maintenance Cycle 3, Week 3 – Methotrexate, at the highest dose I’ve started a cycle at so far. The nausea was new, but tolerable. The emotional impact (an infrequently experienced side effect of Methotrexate) has been enough to throw me over the edge of self-control. Over the last week, I’ve had two temper tantrums and really botched what could have been an awesome event. I cried last week. A lot.
After hugging it out with my very tolerant fiancé, I feel a little less turbulent than I did last week and am excitedly anticipating celebrating the holidays at home this year. The outcome of dealing with a month of salt firmly placed in my wounds is this, I cannot and will not accept that nearly 30% of people diagnosed with APL will die within days of diagnosis. I cannot simply forget that I was very nearly part of the above mentioned statistic. And so, I feel, once again, a renewed NEED to help people have a different, more acceptable experience than I had leading up to diagnosis. The bottom line is, we can not change the past. We can not undo the crappy things that happen to us, but we can use it to fuel our fire. To make us better people, to hold others accountable to being better people and hopefully this formula equals lives saved.
Until next time, Merry Everything and Happy Always!