My Chemo Anniversary

A year ago today, I had my last dose of chemotherapy. I celebrate one of my most memorable passive achievements: being a master receptacle of various poisons for an 8 month duration, including IV and oral chemos, blood transfusions, iron transfusions, various antibiotics, antifungals, antivirals, antihistamines, antiemetics, antidepressants, sedatives, steroids, stool softeners, laxatives, diuretics, pain killers, vitamins, and minerals. I had memorized my medical number, the hospital menu, the hospital floor plan, the names of all the doctors and all their quirks, the food service employees, environmental services employees, and of course all of the nurses and their spouses/significant others/kids/pets. I even learned the walking schedule of an elderly person I watched every day around the running track from my hospital window (miss you, “Boris”). With over 5,000 clinical hours completed, I even earned an imaginary but well-deserved honorary Masters Degree in binge watching shows from the University of Imstuckinahospital. I spent the greater part of a year learning how to take the back seat and allow the experts to take charge, to be patient and trusting, and to control whatever was within my grasp, which oftentimes was my mere mood and sanity. Not that I’m bragging, but I think I’d be an excellent prisoner.

The type of leukemia I had was very treatable, but the chemo schedule was pretty brutal. And being the sensitive and delicate flower that I am, it eventually hit me like a ton of bricks and my heart reacted adversely after just a few weeks into the treatment. My team of caregivers decided that I had to stay in the hospital for all of my treatments so that my heart could be monitored. There were no safe alternatives, so we made do and kept our eye on the prize, which was complete remission after the chemo regimen was finished. When I was in the thick of treatments, separated from my family and friends, I was certainly sad that I had to go through all of it. “Why me?” was an inevitable question asked by me and my whole family, and there never is a good or fair response. After that initial shock, the new question in my mind became, “Now what?” It was a life-saving question because the answers were calls to actions, and actions kept me moving forward.

The first thing that came to mind was to set my family up for success while I was gone. This meant calling on family and friends to help keep the kids on their schedules as much as possible, and to help Jamie from spiraling downward. Again, I barely did anything beyond making the phone calls; my supportive tribe did the actual work. Once everyone was set in their new temporary roles, I then set my mind to making the hospital as livable as possible. As a medical professional (and as a general human being), working with the nice patients was always favorable over having those crotchety, mean ones that complained a lot and were never happy. So as shitty as my situation was, I wasn’t about to take it out on my nurses and doctors. Instead, I tried my best to get to know them, be friendly with them, and show them as much gratitude as possible. They were, after all, my substitute family for the time being. I might have even treated them better than my actual family. They, in turn, helped me feel human, instead of feeling like I had a giant cancer sign stamped on my forehead (and that would’ve been a giant sign if you’ve ever seen my forehead). They played such a big role in making my everyday life manageable; they helped me feel comfortable, recommended all kinds of shows and books to me to help pass the time, laughed with me (sometimes at me), danced with me, snuck in some food to me, and just accepted me for the loud-mouth that I am. Their care helped me not only move forward, but go onward with a smile (and you know smiling is just not my thing, so that in itself was a minor miracle).

The final thing that I did to answer my “now what?” was to write everyday. I wrote daily on CaringBridge like it was my job. Even if I barely had anything interesting or important to say, I wrote. When everything else was up in the air, writing gave me purpose, direction, and a feeling of control. If I made myself write everyday no matter what, I felt like I wasn’t going to give up or give in to any sad or frustrating feelings. I was lucky to have some people read what I wrote on a regular basis too, which also helped me feel connected, even when I was trapped in my hospital room. I wrote everyday for nearly the entire year, and shockingly to just about no one, I still have things to say.

I will never forget that final day in the hospital. It wasn’t actually very sunny out, but it felt like everything was so bright and cheerful, like that first day of a long awaited vacation. My nurses came into my room to hang my last bag of chemo, with music playing from their phones and whipping around celebration boas and streamers. They were sending me off with a bang. We recited my medical number together for the last time, and they left me in peace. I sat quietly for the final 2 hours and 10 minutes with a calm I can only describe as unfamiliar. It was neither an anxious or relaxing feeling, just very steady and welcoming. Drip, drip, drip…one one thousand, two one thousand…drip, drip, drip…one one thousand, two one thousand. I watched that final bag of arsenic do its magic until the very last drop. When my IV beeped for the last time, I felt that excitement kids experience when the school bell rings at the end of the day. I happily called my nurse to finally unhook me from the machine. Soon after, I heard tiny footsteps running towards my door, followed by excited screams of “Mommy!” from Reese and Evan. I held them so tightly, along with Jamie, my parents, and my sister. My brother was there too, but we don’t do hugs or loving touches, but I do believe there was eye contact and a smile exchange, perhaps a high five. Reese’s 2nd grade classmates made me a congratulatory dance video and a stack of homemade cards, which warmed my heart and also made me giggle to see the million different ways to spell ‘cancer’ and ‘congratulations’. My family and I were then called into the family lobby area, where all the nursing staff waited to surprise me with cheers and applause, balloons, and the best victory dance I’ve ever seen. The energy in the room was electric, with so much genuine joy and pride, maybe a little bit of embarrassment (which I loved), and a true sense of accomplishment. My chemo journey was as much of an achievement for the nurses and my family as it was for me because we all went through it together and ended victoriously. And when we win, we dance.

And then I got home. Hello, outside world, I forgot how hard you are to live in. Overwhelmed and feeling physically spent, I was face to face once more with my next challenge, except this time instead of it being about how to not die, it was about how to do life again and make it normal for everyone else. Again I heard the question, “Now what?” I was as frail as an 80 year old, with the determination of a teenaged athlete, and the patience of a toddler. It was a confusing time to say the least, and the path to success was not very clear. I had to rest and take it slowly, which is never a pace I take (unless you are directly speaking about how I run). I also had to get my family and my home back to working order, which was the polar opposite of resting and taking it slowly. Many things still seemed out of my control, like my energy level and appetite, and general desire to cook, clean, or help with common core math homework (still working on that). Some days I had it in me to do multiple things, others had me barely completing one. Some days I was teaching Reese how to cook easy meals on the stove or teaching Evan how to prepare his own breakfast, other days I was half asleep on the couch begging them to feed themselves and do their homework on their own. Believe it or not, sometimes I missed the days of being able to pick up a phone and dial 23663 to ask the hospital kitchen to bring me some dinner. Jamie never knew what he was coming home to – a happy wife thrilled to be doing things with the kids and work around the house again, or a blob in bed barely having the energy to say hi.

For someone who just wanted it all behind me as quickly as possible, the healing process was painfully slow. I felt like I maxed out on asking for help, so I tried to handle most things on my own. Many days, more than I’d like to admit, it just wasn’t happening. But no one was putting pressure on me to get back to my normal pace, except for me of course. Even my kids didn’t seem to be asking for much, just that I was around in whatever capacity I could. So why did I put so much pressure on myself to hurry up and be better? Who fucking knows. There was no prize involved for rehabbing the fastest in all of cancer rehab history. It was just me against myself (and I play to win, bitch). Jamie even made the doctors say to my face that it would take at the very least a year from the last day of chemo to start to feel closer to my baseline level of function, mainly because he knew I’d push myself too hard too fast and feel like a failure. He would remind me every couple of weeks that I was rushing the process and having unrealistic expectations. I felt like I was making life unnecessarily hard for myself and others around me for no good reason. Eventually, after months of trying too much and overdoing it, I finally took a slower pace. I dumbed down my expectations of myself, went back to “Do what you gotta do to stay alive and be well,” and worked on doing any action, simple or complex, every single day. I accepted imperfections around the house, with the family schedule, with my body and my fitness, and even my mood. I re-examined my approach to raising the kids, fostering healthier relationships, and just having a better understanding of what this healing time was really about.

The universe seemed to be throwing so many little nuggets of wisdom at me throughout the year in dodgeball fashion, and sometimes I didn’t want all the damn life lessons in my face. Damnit, universe, I’m tired, leave me alone! So I implemented a little bit of ‘dodge, duck, dip, dive and dodge’, and just grabbed a few takeaways from my experience that I could actually process and put to practice. After all, I wasn’t working towards Dalai Lama status, I just wanted to be somewhere between a tolerable and good functional human being. One of the wisdom nuggets I snatched up was learning to let go of things that didn’t work for me anymore and simplifying my paths, and it applied to so many different aspects of my life. It is scary to move on from certain things from you past that brought you comfort or happiness, but it could also feel liberating and open doors to better ways of life. The other valuable takeaway was to just take action. Do stuff. Do literally anything. It can be meaningful or it can be menial, but at least it is active. I’m the kind of person that can get trapped in my thoughts or feel paralyzed by indecision. Sometimes when I felt like I was drowning in my thoughts, I just got up and did something random, like walked laps around my house, cleaned up a few of the kids’ toys, or got my iPad out to write. The kids would ask me what I was doing and I’d say, “I have no idea, just getting out of my head.” The movement behind a simple action created momentum and inspiration to do more, steered me in a direction I might have otherwise not discovered if I was stuck in my head. The thoughts, the what ifs, the endless hypotheticals will always be there, but the actions actually take you places. My baby steps, oftentimes meandering, were still steps nonetheless. For me, those simple actions took me through an entire year of healing and to a starting point to redefine myself.

And here I am now, cancer free and feeling better than ever. I can say with confidence that I am healthier and stronger than I was when my body was at its peak level of poisoned, but still with plenty of work ahead. I’m moving in the right direction, and that’s the important part. Jamie is happy that I am around (most days), and the kids seem back to being at a healthy level of naughty. The kids constantly tell me that I’m so loud and I shout too much, so it seems like I’m nearing my normal levels of bitch mode. I’m better at making time for self-care, though many days it looks like I haven’t showered or changed clothes in weeks. I celebrate small daily victories, like using my InstantPot without blowing up my house, or letting the kids play with slime wherever they feel like it and not losing my shit when I find bits and pieces of it on their clothes and bedding, or laughing it off when I see Jamie playing a video game with the kids (or by himself) instead of folding clothes. If you ask Jamie or the kids if I’m back to my strict old ways, they’d probably all say yes. But you know what’s worse than too strict? Too dead. And I’m very alive, and feisty as fuck. Happy anniversary to me, and to everyone who shared in the fun. One year down, and God willing, a good 60 something years to go.