Acute Promyelocytic Leukemia - a Retrospective

As I approach my one-year cancer-versary, I’ve been feeling a need to reflect on the time and to wrap up the story, to record something profound about having cancer or learning from cancer or something to make it all make sense. It feels like an unfinished chapter in the book of my life, and I need to find the appropriate words to complete this chapter.  

What is having cancer like, one might wonder. Here’s the physical aspect: Since December 8, 2023, I’ve spent 45 days in the hospital (stay #1 was 42 days, stay #2 was 3 days). I’ve made almost 100 trips back and forth, to and from Hartford Hospital (one!!! more to go). I’ve been infused with more than 100 doses of arsenic trioxide, which is one of the most toxic forms of arsenic, the toxin most commonly recognized from the 1944 film Arsenic and Old Lace. There have been two bone marrow biopsies, a pic-line placement, a mid-line placement (which I was awake for…this was an experience), and a port placement. There have been collapsing veins, blood clots, echocardiograms, ultrasounds, dozens of EKGs, dozens of lab draws, multiple transfusions of blood, platelets, precipitate and plasma (I totally appreciate a vampire’s bloodlust in a way I never did before). There was an episode of potential liver failure, which ruined the family vacation as I was hospitalized the day before we were supposed to leave for the Bahamas. There was near-baldness, mouth sores that were one of the most painful things I’ve experienced, and the port still in my chest that feels like a Mento just beneath my skin, serving as a daily reminder of the things my body has gone through.

My four doses of chemo in the earliest days arrived in a heavy black suitcase, with a skull and crossbones on the case. There was a nuclear stress test in which a tiny portion of radioactive material was injected into my bloodstream. The syringe with the nuclear material was in a heavy metal box and the nurse had to wear protective gear similar to a heavy-duty x-ray shield. The doses of arsenic also required the nurses to suit up, wear gloves and a mask, with the requirement of placing the empty infusion bag – after the arsenic flowed into my body for an hour each visit - in a special garbage can, also with a skull and bones on it. I’m reminded of my cure’s toxicity every day. Who knew that arsenic, a naturally occurring poison that is also used in pesticides, herbicides and insecticides, just so happens to be the “miracle cure” for exactly one type of cancer?

What is it like, mentally and emotionally, to have cancer? I was devastated to receive the news at a walk-in clinic on a Friday night in December and, in hindsight, I think I went into shock, where I remained for several months. I was afraid sometimes but, most of the time, I thought I’d be okay. I was in the ICU for 11 days and I honestly don’t remember a lot of that time. Mike’s, the kids’, and my siblings’ faces revealed to me their fears. While I did feel awful, I don’t think I realized how sick I really was until about a month or more into my hospital stay. On a particular visit from the oncologist as my labs started to reveal that I had “turned a corner,” she told me how much sleep she’d lost over me and my case and how, based on better lab showings, she was finally able to relax a little.

After I got out of the hospital, I was just exhausted – physically spent from all my body (and mind) had endured the previous six weeks. I took A LOT of naps and largely tried to proceed as normal. I went to the kids’ sports games, I worked from home part-time and eventually went back to the office part-time in my off cycles of treatment. I planned a Canadian vacation (during which our car was stolen…I’ve never been known for my luck). I painted a couple rooms in the house, did some yardwork. Get cancer and carry on…that was my motto. During the recovery, I also remembered how to feel again.

This part is all a little more complicated. Due to a variety of personal and familial traumas between 2019 and 2023, I became emotionally catatonic around 2021, completely depleted of tears and feelings. I kept on keeping on, grateful to get through each day. And so I approached cancer, matter-of-factly, the same way…this cancer business was just one more crisis to deal with, amongst my many other crises, which had been occurring sometimes consecutively and sometimes concurrently. Upon diagnosis, one of the first things I said was, “If my regular life hasn’t killed me, cancer doesn’t stand a chance.” In hindsight, I have to wonder if my “regular life” and the stress and frequent misery wasn’t a contributing cause of the cancer. Perhaps my “regular life” was, indeed, going to kill me. But my emotional paralysis was probably a blessing in that it helped me stay rational to get through CANCER. There were, of course, fleeting moments when I would think of the possibility of not being around to see my kids finish growing up…I tear up now as I type this. But, as a whole, especially after the earliest days, I was pretty sure I would be okay. I don’t necessarily think it’s mind over matter, but I also don’t think that the mind isn’t a part of the process.

I’ve decided over time that the cancer was a blessing. Those years of preceding family trauma came to a head at this exact time (whether directly or indirectly because of the cancer), and the elusive ‘breaking point’ was finally found. And when things broke, they broke dramatically. But it was this “breaking” that finally, eventually, allowed the rebuilding process to begin. I don’t know definitively if the cancer contributed to the breaking, but I do believe that the cancer played a role in the fixing and rebuilding. So I’ve chosen to be grateful to and for the cancer for being a major player in this situation. If cancer contributed to ‘the fix,’ then it was all worth it and I’d do it all over again.

My girl, Grace, is named Grace because of a woman I met at the age of 19 (she was 39), who died of cancer when I was 21 (she was 41). Gail was an amazing and funny and kind and strong woman who battled multiple cancers during the two brief years I was fortunate to know her. She was a fast friend and she took me in to her family and her life. She had a husband I adored and a 9-year-old son, for whom my heart broke. Gail lived her life – and, more importantly, her disease – with such grace, that I knew if I someday had a daughter, she would be named Grace, to honor Gail and all she taught me about humility and hope and strength and grace. I still choke up, 26 years later, when I think of my beautiful friend.

Have I changed? Probably. I’m probably a little more able (on my good days) to let the small stuff go. I’m probably a little more aware of the preciousness of each day, though I’d always been conscious of the fragility of life and time and the lack thereof. I’m probably a little more inclined to not put the important things off until later, just in case there isn’t a later. I’m probably better at saying “I love you” more frequently than I did before.

I tried to follow in Gail’s footsteps and be positive throughout, be a compliant patient, and, so importantly, to have patience. I tried not to complain, which was fairly easy as I watched several of the other patients on the floor be there one day and not the next (they were not discharged; they lost their fight). Even though my situation wasn’t ideal, I tried to remind myself that there’s always something worse. I tried to set an example for my kids like Gail set for me, that it’s possible to deal with some incredibly heavy stuff while also keeping a sense of humor and being kind and not wallowing in misery. I tried. Every day, I tried. Which is all any of us can do every day, in any situation – good or otherwise. I tried to be a good person. Tried to stay positive. Tried to be grateful. Tried to live with grace. Tried to find the “good” in a crap situation. Tried...still trying...to make it all make sense.

I think that's it. This is really all I know. No matter the situation, the only way through it is through it. Keep going. Try.