I’ve been trying to decide what to write for six weeks now. Some days, the struggle was thinking through the brain fog. Other days, the rage, sorrow, and pain took up my full attention. More often, the pile of new, cancer-related tasks overwhelmed me. Which is why I’m not going push myself to regularly produce technical writing at this time. However, like Brandon Sanderson on vacation, I can’t promise I won’t write anything.
Even after I started tweeting about cancer, I debated writing about it. It’s not like I haven’t gone over a month between articles before. Eventually it became clear that not one of my half-finished technical articles tugged at my attention like the phone note with six week’s worth of cancer thoughts. The time since my diagnosis feels much longer and much shorter than that at the same time. And still, there’s a much harder road to come.
It started with a lump at a regular checkup. A lump I was reassured I shouldn’t worry about. The imaging results should have confirmed that. Except they didn’t. The next round of imaging didn’t either. In shock, I didn’t even notice the “suspicious findings” box that was checked on the biopsy form I got from the doctor. In denial, I asked the biopsy coordinator if I should schedule it as soon as possible. “That’s what we’d recommend,” she said.
That’s how I ended up getting “minor outpatient surgery” on Wednesday of RenderATL instead of attending a workshop on design systems. I was told I would get the results six days later. “Great!” I thought. “Render will be a good distraction.” That night, I warded off sadness and fear by working on a costume and matching stickers. Friday, the biopsy sites were still sore, but I was feeling fairly normal. Then, I found a quiet back hall to take a surprise call from my doctor. My lymph node biopsy was clear, but the lump was officially a cancerous tumor. I needed to see him on Monday to make a plan.
So I sat down to watch a talk, trying not to think about how my friend next to me was also trying not to cry. “Should we do something?” he whispered. “I don’t know. What is there to do?” I whispered back. Laughing at Kelsey Hightower’s amazing talk felt surreal. Talking to people about anything but cancer felt surreal. I found myself putting on a brave face and emphasizing I’d probably be fine. “Fight” and “beat” started coming up. I was at maybe “persist” or “persevere”. They say you always remember when you found out you had cancer. I’m lucky my memory is filled with the warmth of friendship and hours of fun distractions.
My husband, Matt, and I fell asleep crying that night. It wasn’t until a day later, when I saw my parents, that I really broke down. My little sister, who has battled with Chron’s for a long time, didn’t say “brave” or “fight.” She told me I can believe that I’ll be ok and that this fucking sucks at the same time.
For three days, my anxiety felt thick enough to cut with a knife. Since finding out, there’d been a pit in my stomach that no relaxation technique could touch. Food was difficult. More than anything, I was scared. When I managed to forget the fear, I was angry. It seemed like the moment I became content with my life, I got a big fat cancer curve ball. Without context or a plan, I felt like a ship adrift in a suffocatingly calm sea.
Luckily, my support network jumped into action, and for once in my life, I leaned into accepting help. Matt and I walked into the surgeon’s office with two pages of printed questions and a notebook with even more. By the end of the appointment, we still had questions, but they were for the oncologist. First, I had to prep myself for the next surgery. This time, it would require general anesthesia. That was the first day I actually slept properly since the biopsy was scheduled.
I took the week off. Learning about cancer and talking to people about cancer was a full time job. The benefits? crying breaks and little treats from loved ones. I really disliked delivering bad news to people over and over. At this point, I had heard “you’re so young,” so many times that I had to remind myself I was not an eight-year-old child with a terminal cancer diagnosis. All the test results we were getting back were best case scenario. I wouldn’t say I hopeful yet, but I was getting better at delivering the news without apologizing.
Outside of my new vocation, I prepped for the baby shower I was hosting the day after surgery. Cancer survivors, doctors, and counselors were the only ones who saw this as reasonable. Hobbies, but more so purpose, would continue to be extremely important. The surgeon okayed it as long as I left any day of prep to my support system, who readily volunteered. I wanted the focus to be on the guest of honor, not me. I had only told my family and the friends who knew about the biopsy already. Luckily for me, one of those people was my baby shower co-host.
Up until the day it happened, my desire to get the tumor out of me outweighed the fear of surgery. Matt and I are chronically late, so we overcompensated and arrived at the hospital early. This worked in our favor – the sleepiness and hunger were distracting, and we were able to start surgery an hour early. The procedure to prep for surgery was performed by the doctor I saw for the biopsy. The same nurse assisted. It was comforting to see familiar faces, and their kind words made me cry. The surgery itself included removing the tumor and checking my lymph nodes again. Right before I went under, the surgeon told me he expected to take at least one lymph node. On waking up, I asked how many they took. None. My lymph nodes continued to be clear.
At home, the anesthesia wore off, but the pain meds stayed. I watched my stepmom and best friend assemble a balloon arch while Matt took excellent care of me. Saturday arrived and the baby shower went perfectly. I managed an outfit that I can only describe as “surgical chic.” As time went on and no one asked why I had on hospital socks, I longed to be able to keep the lie by omission going.
Slowly, the guests I didn’t know well trickled out. Then, it was me and my friends. Seeing them react to the news, I remembered why I had started telling people by phone and text. Shock and horror filled their faces. I wanted so badly to go back to the joyful party vibe. I cracked jokes and focused on the best case scenario test results. My friend who had worked administering radiation therapy nodded in agreement. “Still,” she said, “treatment is going to suck.” I nodded too. I thought about the survivors who had already told me they opted for more aggressive surgery after treatment because they wanted to avoid any chance of having to go through it all again. I paled at the thought of the next steps being worse than my current recovery.
After everyone left, I sat trying to watch what was on the TV. I wanted to go back to focusing on bringing joy to someone. Now, all that was left was to focus on waiting and healing. I was so hungry after surgery that I finally started eating normally again.
The next appointment a week later was tough. My support network was eager to find out what treatment would look like. I was supposed to be finally referred to an oncologist. Instead, like about 30% of these surgeries, there was an edge of the tumor that was still positive. I needed another surgery in three weeks to go back in and remove a 1 mm piece. A treatment plan would have to wait.
The next week, I was starting to get my range of motion back. The week of surgery, I had enough energy to be bored with resting. The normalcy was almost difficult because I knew I was about to lose it again. The third surgery was physically far easier than the second. That afternoon, I watched balloon decorations be assembled again. This time, I was only attending a baby shower the day after surgery. The next few days I oscillated between exhausted and hungry. Before long, I was going stir crazy.
I was referred to an oncologist one week after the third surgery. As part of the comforting and scarily surreal level of care I was now getting, he was able to see us the same day. It was the toughest appointment yet. Never before have I been encouraged to think about existential philosophical conundrums in a physical health appointment.
We started with the context: I will probably be fine. At this point, with the tumor completely removed, I could be cured.
Next, the limbo I now live in: There is no test that can tell me if some cancer cells escaped to other parts of my body. Even if there was, no one can say if those cells would become a tumor. Furthermore, I fall into a category of 5% of patients for which there is no data on how chemo affects our outcomes. There is even an ongoing study for which I might be eligible.
Finally, the certainties: I will be doing 5 weeks of daily radiation appointments. After that, I will go on a cocktail of drugs for 5 years.
That was a bad day for me. The people in my support system did not like the answer they had once so eagerly awaited. To make a decision based on no data is a struggle for me. There are no guarantees and chemo has side effects in perfectly healthy people. There is also no data on how it affects people with connective tissue disorders. Suddenly, I understood why so many cancer survivors said they were always there if I needed to scream.
Luckily, I had another baby shower to distract me. For about 24 hours, I thoroughly enjoyed making themed foods and crafts with my co-host. I had a little champagne. That Saturday was a good day. I’ve learned the art of taking it a day at a time.
It’s now two weeks after the third surgery. The cancer is only a part time job. Thankfully, my real job is extremely supportive. I’ve quickly grown more comfortable relinquishing control, accepting help, and resting. Thanks to my connective tissue disorder, I’m so comfortable navigating all the new jargon and procedures that I keep being asked if I’m a medical professional. Through our network of cancer survivors and doctors, we’ve been able to schedule appointments with specialists who are actively generating data on patients like me. I have plenty of tests and appointments to get through, so it may take up to six months for me start chemo or radiation. Since there are no more baby showers to distract me, I’m still making plans and picking up hobbies.
This has been and will be the most difficult journey of my life so far. Moments of joy and beauty feel softer and brighter, but they are often bookended by tears. Every time I’m asked if I can do something over a month from now, I long to have some clarity and peace about future plans. While I take it a day at a time, my husband has picked up the marathon view. He attends all my appointments. He reads up on current studies. He reminds me that today is not forever. We weather the storms and celebrate the little wins together.
I’m going to be ok, and this fucking sucks. And if you’re going through something similar, we can always scream together.
