My post-treatment recovery has been a period of joy, connection, and rest.
It's been ten months since I finished radiation. I meant it when I said I leapt back into life. Since treatment, I've given seven conference talks, including my first international one. I showed up to film an episode of the Web Dev Challenge with almost no eyebrows and even fewer eyelashes than I left Atlanta with.
Most importantly, there have been days when I didn't even think about cancer.
After radiation ended, people began asking about remission. Turns out, it depends on which doctor you're talking to. Since I could have been cured by surgery, my remission either started after surgery in July 2024 or after chemo in December 2024. Since there was no proof that my cancer had spread beyond the tumor, the rest of my treatment after surgery served to kill anything that might have escaped. Cancer treatment is often frustratingly grey instead of black and white.
By the end of March, my hair was still the first thing people mentioned every time they saw me. I had kept about 40% of my hair, but my scalp was still tender and healing. As a result, I couldn't use a hair dryer long enough to get it fully dry. I was still out-shedding my Shiba Inu. Tumbleweeds of long blonde hair followed me everywhere. They stubbornly stuck to my clothes through the washer and dryer. It felt like I was suffocating and that I should be grateful to have any hair simultaneously.
My hair has never been straight, but the new growth I started to see was extremely curly. They call it the Chemo Curl. The new curls and shedding hairs formed mats. Dealing with the mats was painful and often resulted in more shedding. I tried keeping my hair braided, but the same tension every day pulled out more hair at the top of the braid. I began to feel like a fraud when people complimented my hair.
Once I cut it, I feel free. More like me. A few months later, the inch-long ringlets made it impossible to style. I cringed when I saw it in photos. Now, I'm starting to get the hang of it. My hairstylist and a friend helped me navigate curly styling products. Some of my new ringlets are now three to four inches long. I wait to see if my chemo curl is temporary or permanent. Only time will tell.
By April, the rest of the hair on my body made me feel like I was experiencing squirrel pattern baldness.
Every time I looked in the mirror, I noticed new body hair. My brain didn't know what to do with the peach fuzz on my face growing straight out. I was covered in patchy and itchy stubble. Some of it temporarily and dramatically changed color or texture. As I approached normal, I took comfort in being hairy.
During radiation, I could tell my scar tissue was changing. As I healed, I noticed changes in the surrounding healthy skin and muscle, as well. My range of motion decreased. I learned that the combination of surgery and radiation on my lymphatic channel (the tubes that hold your lymph nodes) was causing it to shrink. The shrinking pinched blood vessels and nerves, so I started getting nerve pain and circulation issues. I started physical therapy (PT) at a rehabilitation center.
For a long time, my weekly PT appointments and daily self-administered PT were just fighting the radiation still working its way through my system. I was manually breaking up scar tissue as fast as it formed. Four months after radiation ended, I started seeing progress. My range of motion returned to normal. Everything started softening back up.
And while all this was going on, I was living my best life. I'll never forget my week in Paris. I was still affected by feelings about the changes in my body, but I was so glad to be free from daily hospital rooms.
At our first dinner in Paris, I befriended a fellow tourist and cancer survivor who was finishing up the same drug I had just started. Her group whisked us away to the Eiffel Tower for its last sparkle of the night. My favorite song came on the radio on the way back. It felt like a movie.
Most of all, I was relieved to see my husband relax. He had worked himself into knots making sure he was supporting me to the best of his ability. But as my need for support returned to close to normal, his stress level didn't. The joy, relaxation, delicious food, and forty-four miles of walking put my husband and I on a better path. It was also very special that he got to watch me speak at the historic Folies Bergère about a topic that affects both of us.
Back in the States, the rehabilitation center was the first cancer center in which no one acted like it was weird that I was so young. After a handful of individual counseling sessions, I agreed to join the Young Survivors support group. For the first time, I had found people that were going through the same things. I finally wasn't alone.
We complained about the people who hadn't faced treatment with us and now expected us to satisfy their curiosity by re-living our medical trauma. We lamented that they wouldn't ask the questions they actually want to ask. (They just keep saying "How are you? No really, how are you?") We commiserated about the uncertainties, especially around having kids. I learned why so many of my doctors had reacted so dramatically to the name of the drug I'll be on for five years. The possible side effects can greatly affect your quality of life. Time and time again I have learned that it all could have been much worse.
No one will ever be able to tell me what caused my cancer. No one will ever be able to tell me if it will come back. In September 2024, this knowledge triggered an anxiety spiral in me, so I made the choice to not dwell on that. I had to believe treatment would work. I'll panic if there's something concrete to panic about. The more I interact with cancer survivors and their loved ones, the more I realize that reaction isn't the most common one.
Doctors often ask me to complete questionnaires designed to catch anxiety and depression. I remember when it was challenging to pick an answer. No anxiety or depression would have been abnormal. Now, filling them out is a breeze.
Every once in a while, I catch notes of jealousy and pain in the voice of a fellow cancer survivor who is trying to be happy for me while still struggling with the weight of it all. To be fair, I think I'm pretty good at hiding the jealousy I feel when I talk to people who are even luckier than me - the people who get to avoid chemo and radiation. I am amazed at the resilience of the survivors who supported me emotionally through treatment. Thankfully, we've never lost sight of the fact that we're all in a really cool, elite club that none of us wanted to be in.
On the anniversary of my diagnosis, I was in the same building and attending the same conference where I got the call. I felt raw and vulnerable. I was surrounded by a big part of my support network. Instead of a very sad, difficult time, it felt like the final step of learning to trust my village.
My nerves about my first scan post-treatment were about the logistics rather than the result. In the waiting room, I had a visceral reaction when they pulled out a wristband for me. Because I had never had a normal result from one of these scans, I had to ask the hospital staff to repeat the result. It felt surreal to get to leave without any fuss.
I know I'm out of the woods because the system has begun to move slowly again. (You know it's bad when the U.S. healthcare system starts moving quickly.) For the foreseeable future, I'll be getting a scan every six months and an oncology appointment every three. It's common to have anxiety about the scans and lengthening the time between appointments. This still feels like a lot of appointments to me. I'm happy to spend less time in wristbands.
Most of the feelings I still wrestle with are related to being a patient. I get nauseous if I think about chemo for too long. I used to laugh at how many supplements my parents took. Now we compare our daily regimens and studies we've read. I've had a needle phobia since I was six, and now I'm so experienced with needles that I give tips on how to find my veins.
I try not to think about how many hours I've spent in medical waiting rooms. I debate making a medical resume to make doctors' forms easier. Often, other patients ask me about the knitting or crocheting project I'm working on to pass the time. I don't tell them that it's to prevent me from fleeing the waiting room. I don't mention that I'm glad to be done with the project I took to chemo and radiation.
As I run into people who haven't kept up with me, they often unwittingly remark on things that touch a nerve. Usually, about how my attitude or body has changed. I lament that most types of cancer treatment cause weight loss and I got one of the kinds that causes a lot of weight gain. I love that I put down many of the worries and obligations that no longer served me. I hate that I was forced to miss out on 5 months of regular life.
Doctors tell me I'm stoic, a trooper, and a good patient. People tell me how strong I am. I don't know how to describe the river of tears I'm finally leaving behind. I can't put into words what it's like to learn that time can slow down until you're not just living day to day, but minute by minute. I deflect, calling it "stubborn persistence," and friends remind me that that's a kind of strength. I know that well is there deep within me and hope I don't need to draw from it again.
I've realized that being able to understand everything I went through - what treatment does and why I needed to do it - is a large part of what kept me sane. There were only a few times where it was not enough - my body didn't want to do it anymore. Until you've had to willingly poison yourself, you don't know what tricks you'll have to play on your own brain to keep poisoning yourself. Still, for a long time, it felt like I had no agency - like cancer was the thing deciding my course.
Now, I'm almost done recovering from what was hopefully my final surgery. This time, it was my choice. I was surprised by how much that sense of agency mattered to me. It was cosmetic and I'm very happy with the results. It wasn't magic - I'll always have scars. The surgeon reported that my radiation scar tissue was way better than average, so all that PT was worth it. Which was a good thing to hear before I had to start a new round of post-surgery PT.
This time, I practiced spite-driven rest. (Not a single person believed I would rest, so I had to prove them wrong.) Between that rest and the two weeks I took off for the holidays, I had a lot of time to see family and friends, reflect, and set goals for the coming year.
It finally feels like the fresh start a doctor promised me a year and a half ago.
Someone recently asked me "What's one thing you're doing today that you weren't doing a lot of a year ago?" and then we laughed and laughed. A year ago I could barely get out of bed. A year ago, I still had a long slog ahead of me. A year ago, I wondered how other people made it through longer treatment regimens. A year ago, I wondered if I would be able to do it without breaking.
I'm glad I learned to bend more easily.
Decisions that would have been difficult for me two years ago are now easy. I cry and feel love more freely. I find joy in even littler things. I trust myself and others. I try to avoid plot lines and ads about cancer patients. I collect stories from fellow survivors about being in remission for years and years.
I'm taking it a day at a time because I want to, not because I have to.
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