Ringing the Bell after Cancer Treatment
It is done! But, we definitely had a few glitches along the way. Rather than starting proton radiation treatments on January 9, my start date was moved to January 10 due to issues with the machinery. Then, the very next week, Nashville was hit with an icy/snowy winter storm. We had moved Andy’s car to the cul de sac behind our street before the storm hit, which is at the bottom of our hill, in hopes that if the Proton Center stayed open, we could slide out of the neighborhood and onto a nearby road that gets treated for snow and ice. On Monday, January 15, the center closed due to the storm, but on Tuesday, we got to try our ice sliding method and it worked! We made it to 3 treatments that week in the midst of our own street being impassable. But then, machines were down again that Friday, so my appointment was canceled. Thankfully, that was the last canceled appointment was encountered.
I somehow managed to continue working 40 hours per week throughout my treatments. I think I took a total of 6 hours of PTO during those 6 weeks. I kept waiting for the most severe side effects, but they never came. Fatigue definitely descended, but I was able to navigate it. I would get up at 6:45 AM. Start working by 7:30 AM — work for 4 hours. Then head to treatment around 11:30 AM most days, which was about 2 hours total. Come home and work 4 more hours, wrapping up around 5:30 PM.
I only took sedation for the first two treatments. I didn’t like how it made me feel. That being said, it definitely helped me get over the initial anxiety, which for most part, I was able to keep at bay. I definitely had a few treatments in the mix where it felt difficult to breath in the mask, and I would start to panic and then talk myself down with box breathing techniques.
My neck and jawline pinkened as the weeks passed by and then turned red during my last week of treatment. By the very last day, the first signs of peeling started. Thankfully, now 8 days after my last treatment, the peeling has almost completely ended and my neck is back to pink rather than red.
We met with my doctor every Tuesday for him to check in, look at my neck, and answer any questions. His mantra to us each week was, “Let’s keep it boring.” I think we accomplished that.
At each treatment I could select my music from Spotify, which they would play over the speakers in the treatment room. I learned quickly that the easiest way to make a selection was to pick an artist (not a playlist). But, you never knew what songs from that artist might play — they definitely had some sort of shuffle function on. I stuck mostly with 90s/00s artists and loved having familiar/nostalgic lyrics to listen to and sing along with in my mind. I picked a new artist every time so that none of my beloved songs got tied into radiation treatments causing future PTSD when I heard them — I wanted to protect them from that. :)
In selecting music, I also knew I wanted Will’s music (my brother-in-law who died of cancer in 2013) playing during one of my treatments. I wanted his tangible presence in that room with me for one time. I had decided to have his music playing during my next to last treatment. The last one felt too emotionally overwhelming, but having him play earlier in my treatment cycle also felt too difficult (getting used to the mask was hard enough). But the techs ended up playing David Gray (wrong Gray) during treatment #29, so in order to have Will’s music with me, I was left with treatment #30. At that last treatment, as soon as the music started playing, I felt comfort but also overwhelm — what in the world had I done to myself — there is always an emotional charge with his music. With the mask tightly in place, tears started creeping out of the side of my eyes. I had to talk myself out of focusing on the music, so that I didn’t smother myself with sobs. But it also felt right and appropriate and good to have his music playing on that last day. 11 years earlier during these exact months, he too had gone through radiation for a head and neck cancer. (We both also had our surgeries to remove our tumors in Novembers — 11 years apart.) He knew what it was like to be strapped to that table, to have a mask so tight that you come out each time with a waffle face. And, I remember when I saw his mask when he had completed his treatments, I thought, “I could never do that.” And, now here I was, in the middle of my very own last treatment about to have completed the task.
When I was done, the tech handed me a bag with my mask, hair ties, and neck rest, which had been used for each treatment. I went back into the changing room to change my clothes and then stopped by the nurses station for them to take one final look at my neck. The nurse practitioner decided to prescribe a cream that is used on burn victims in hopes it would keep my skin from weeping in the coming days. And, then I headed to the front where Andy, my mom, dad, Angie, and John (via Facetime), were all waiting for me. I read a poem they have all patients read, and rang the bell 3 times. Tears started once again. I had done it.
During my weeks of treatments, I was showered with meal train meals, notes and cards of encouragement, flowers, Door Dash gift cards, texts and emails to check in, and a pile of cozy blankets that I would melt into each evening. My mom came down at the halfway mark to help with drives to my appointments and to stockpile some soups for us. My in-laws mailed me cards everyday with notes of encouragement. And, my family gave me a small gift to open at the end of each week. Plus, I was counting down my treatments on my countdown calendar with all of the encouragements you sent my way. And, I bought myself a ring as something I can wear to remind me of what I accomplished. I am SO, SO grateful for the many ways all my friends and family loved me (and us) so well during these treatments. THANK YOU!
Yesterday was one week since ringing the bell. On Wednesday, I attended a cancer survivor group for the first time. Today, we met with my medical oncologist for a follow-up as he will be my point person moving forward for follow-up scans and monitoring my case. (I have my next follow-up CT scan on April 12.) I’m honestly still pretty overwhelmed by all the events of the last three months. (I found out I had cancer on November 21. On February 22, I rang the bell.) And, in the midst of it, I’ve been trying to figure out how to best care for myself and heal. I’ve continued seeing my therapist and going to acupuncture through the treatments. This week, I was back in the gym. Today, I’ve taken off work to have some space to think and write and redeem some of the gifts from my family. (I’m writing this from Crema.) Because, in the midst of all of this, which has been A LOT, Andy and I have also been on a fertility journey for over two years now, which is A LOT all on its own. We thankfully get to enter back into that journey more fully now that radiation is complete, but the timing of it continues to be pushed out further than I want or hope. But, we keep moving forward. One day at a time.
