The evening of May 22 was pretty normal for me. It was a Sunday night, so I went to bed at my usual time of 9pm. The following Monday was going to be a long and busy one, as it was my last day in the office before a 10 day vacation.
Sometimes I struggle with insomnia. Usually when my anxiety is up, which it was, and had been, for weeks. Midnight rolled around and I couldn’t fall asleep. I grabbed some pretzel sticks, turned on a movie, and was having a midnight nosh when one of the pretzels broke and punctured the gums behind my upper front teeth. It started bleeding of course, but I didn’t think anything of it because that’s what happens when you poke your gums.
Fast forward to 6am. My gums were still bleeding. Something was clearly wrong so, I woke my mom up and we headed to urgent care. The bleeding was my primary concern but, I’d had some other weird things going on for a few weeks leading up to this. I was bruising easy, which isn’t normal for me. I was getting random bruises that I couldn’t account for which, again, isn’t normal for me. I had these weird red spots that would show up on my body—on my stomach, my arms, my legs, my shoulders. (I later learned these are called petechiae.) I was falling asleep and taking naps a lot because I was exhausted. I also had blood blisters randomly pop up on the inside of my cheeks and tonsils. Truth be told I knew something serious was wrong. I know my body and I listen to it when things go haywire. I’d done some research on what these symptoms could indicate and while it was possible I had an autoimmune disorder, Leukemia showed up as a possibility as well. And, in my gut, I knew this was probably cancer. I just didn’t want to face it.
Urgent care did a blood count test and my platelets came back at 6,000. The normal range is 150,000-450,000. The doctor informed me that I would not be going on my vacation and that I needed to head over to the hospital ASAP because something was killing my platelets and we needed to figure out what.
Multiple tests and loads of anxiety later, a hematology oncologist came into my ER room and said that based on the numbers, all signs pointed to Acute Myeloid Leukemia. I’d need a bone marrow biopsy to make a final diagnosis but, she was about 95% sure I had AML. They admitted me to the hospital shortly after that and after a bone marrow biopsy, confirmed that I had AML.
Nobody wants to hear the words, “You have cancer.” The first thought that went through my mind was, “There’s a good chance I’m going to die from this and if I do, who will be there for Mom, to take care of my cats, to take care of Bill, to take care of the people that I support at work?” I’m a medical Google machine and when you do a quick search on the prognosis for people with AML, it doesn’t look good on the surface. The 5-year survival rate for people over the age of 20 is listed as 27%. Those odds are not in anyone’s favor. That number threw me. I didn’t share it with my mom, or my best friend who was on a plane and in MN the day I was hospitalized. I didn’t share it with my dad or anyone else. I kept that number to myself because it was bad enough that I knew the odds were stacked against me. I didn’t want that weight on anyone’s shoulders. The first night I cried myself to sleep thinking about how I probably wouldn’t get to see my goddaughter graduate and because Minnesota doesn’t offer assisted suicide, which meant I’d have no choice but to succumb to this disease and any awful things it threw at me in the end. I also asked the doctor for advanced directives, because if things took a course for the work I didn’t want machines keeping me alive.
What I didn’t know at the time was that blood cancer is a whole different beast. They don’t stage AML. There’s no tumors to remove. I asked my oncologist about my prognosis and, being the straight shooter she is, she informed me that she couldn’t answer that question for a few weeks because they needed to do genetic and molecular testing to determine how I’d respond to treatment. When it comes to AML, there are three categories for this response – favorable, intermediate, and not good. I was in the intermediate category based on initial findings but, the genetic and molecular testing would either push me up into the favorable response category or knock me down into the not so good response category. She also let me know that these results would determine whether I was going to be a candidate for a bone marrow transplant. (Back to Google I went and again, scary stuff!)
May 26 I was moved to the oncology floor and by that night, I started what’s called Induction Chemotherapy, a 24/7 around the clock chemo for 7 consecutive days. I was told I’d be in the hospital for at least 4 weeks, because my white blood cells and other counts were going to drop so low that I’d be at high risk for infection and other complications. I had no idea what to expect but I knew I needed to have a positive attitude to carry me through this. I have Major Depressive Disorder as well as Generalized Anxiety Disorder and I knew there was a potential for me to get caught up in negativity, catastrophizing things and ultimately letting the depression win. I couldn’t let that happen. I knew I needed to stay strong and wait for the results of the genetic and molecular testing to come back. Without that information, I had no idea what to expect or what I would be in for on this journey.
I don’t want to make these entries too long, because I know it’s frustrating to read a blog post that goes on and on and on. I plan on covering all the ins and outs I’ve experienced in multiple entries—from a candid discussion about chemotherapy and bone marrow biopsies to the importance of nurses to the trauma I have from the hospital and the impact this has had on my overall mental health. I’m planning on covering this journey in chronological entries, so in the next few days I’ll talk more about the days after I finished induction chemo, the complications that came with it, and hospital discharge. And of course, I’ll get to present day, the next round of treatments, and my official prognosis based off the genetic testing.
I realize this blog has taken a turn now with this new set of life events. But, I promised this would be my corner of the internet where I could be authentic and share my journey. That means the good, the bad, and the ugly.
Thank you for being here with me.