I thought I’d start out by sharing what brought me here; “here” in the sense of my story, starting with my cancer diagnosis last fall. But also “here” as in why I decided to make a blog/newsletter about it and what I plan on posting.
My Story
Let’s start with last summer. I had just come out of an extremely low winter of my life, mourning the loss of my father, my dog, my relationship, and the sense of self that comes along with such grief. But by the time summer had rolled around, I finally felt like I had returned full swing, and the pieces of my life were falling as neatly into place as possible. I had accredited this success to my ambition, believing there was no hurdle I couldn’t jump, or at the very least hoist myself over, simply by “putting in the work.” Yoga, meditation, and journaling in the morning, a hearty work day at my job, and evenings spent trying recipes and planning dinner parties, making plans with my expanding roladex of Austin friends. I had even taken on a weekend job to pad my social resume, if not my real one.
So by that summer I was on top of the world. I had recently started dating my now boyfriend, Sam. I had gotten a promotion at my job. My days were filled with WeWork cold brew, bike riding, swimming, sunbathing; my nights with concerts, patio drinks with friends, and dancing at Outer Heaven. I was “living my best life” as they say, and was grateful for every day of it.
Summer was coming to a close as I embarked on a trip to Portugal with my best friend at the beginning of September, a much needed escape from the Texas heat. This was when I experienced my first symptom. As we found ourselves running to make a connection in the Madrid airport, I found myself completely and utterly winded. Like “call me an ambulance” can’t breathe. While we waited to board I struggled to recover myself, but chocked it up to being out of shape due to not cycling in the recent heat.
The second symptom came in the form of a rash of little red dots on both my legs, which I had identified as petechiae. I remember seeing “Leukemia” in the possible causes (which, if you look at the list, none are particularly good), but as a recovering hypochondriac, I decided not to worry about it and assume that it was just a reaction from increasing my step count exponentially on vacation. On the last day, while I was showering, I had noticed the lymph nodes in my neck were swollen — a lot of them.
My condition immediately declined the day after I returned from my trip. Suddenly I had a constant feeling of “fullness” in my abdomen which prevented me from eating much of anything. I was winded just walking from my car to the entrance of my house. I made an appointment with my doctor the following week, certain I was having gastrointestinal issues. But when the bloodwork came back, the nurse practitioner on the screen asked me, “Do you have a family history of Leukemia?” She was looking at me like I was already a ghost.
The next morning I called my mom telling her my intention to go to urgent care. I remember a decisive feeling coming over me, today was the day I had to do something about this. The urgent care doctor was sweet, hugging me as I cried to her about thinking I had cancer. “The good news is we don’t think its Leukemia. But we see fluid around your lungs so we’re sending you to the ER, and you’ll probably have to be there overnight,” she assured me. I texted everyone who I had been updating on the situation, “False alarm! I’m gonna be fine!” I still asked my mom to fly in from Florida since I would be in the hospital, but I was feeling relieved.
Still, the walk from my parking spot to the ER entrance was the closest I have ever felt to death. On one of many sitting breaks, I remember reading “congestive heart failure” on the urgent care discharge paper and thinking “that does not sound great”.
The next few hours in the ER were a blur. I had a CT scan that I could barely lay down flat long enough for - I couldn’t breathe nearly at all in that position. A doctor came in and told me there was a mass in my chest, fluid on my heart and lungs. They were pretty certain it was lymphoma or leukemia. I accepted the news rather calmly; it was almost a relief getting an answer for why I had been so sick. And with both my parents having cancer, I was, in a strange way, already comfortable with the concept. Sam arrived with gifts of Tony’s Chocolonley and the Austin Chronicle for me, and I broke the news to him. “But don’t worry about it, I’m gonna be fine. I’m a fighter,” I said, something I fully believed, and continue to believe today.
My mom met Sam for the first time in the ER room, and soon I was admitted to my room. Over the next couple days, we received more information. T-Cell Acute Lymphoblastic Leukemia. Aggressive. But treatable! I was transported to St. David’s South where I would be starting chemotherapy right away.
The next thing I remember was waking up in the ICU, and intubation tube being removed from my trachea. I was hooked up to a lot more machines than before. And everyone was really glad to see me awake. Over the course of the next few days, I was slowly given the pieces of information that were missing from my memory. I had gone in to the operation room to get a drain placed in my chest to remove the fluid from around my heart. While I was there, I “coded,” meaning I went into cardiac arrest and needed resuscitation. This was caused by something called tumor lysis syndrome, my body’s reaction to the cancer cells dying off from the chemo.
Once revived, I was intubated and put on dialysis, and I remained like that in the ICU for 3 days. I don’t remember anything from this time, but I was told I still managed to communicate using hand gestures and nodding my head, and sometimes, nearly indecipherably, writing things down (apparently the first word I wrote down was “karaoke,” which to this day I don’t know what that meant, other than that was the location of Sam & I’s first date).
The following weeks were a horrid combination of recovering from that episode and adjusting to chemotherapy. My hands were so swollen I could barely use my phone, and my leg muscles so withered I had to slowly retrain to be able to walk again. The nausea was unrelenting. I had a catheter, a drain coming out of my chest, and I was hooked up to several IVs. Most of the time I couldn’t do anything but stare at the wall or close my eyes and watch the mild hallucinations behind my eyelids.
I really hate writing all of this out like I’m doing because it sounds like a sob story. But it’s important to me to describe how bad things were and how much I had to overcome. It was certainly one of the hardest things I’ve ever had to do in my life, and I want to give myself credit for fighting through it.
I was released on October 25th, after my doctor confirmed with a bone marrow biopsy that I was in remission. I cried on the way home because it felt so overwhelming to be back out in the “real world” again.
The next few months held a series of chemo treatments, labs, doctors appointments, blood transfusions, and attempts at having a normal life while being a cancer patient, periodically immunocompromised from the treatment. Each treatment meant 5 days in the hospital, hooked up to an IV pole 24/7. I worked through my last two just to stave off the boredom. They did leave me tired and slightly nauseous, but thankfully were not nearly as bad as that first month.
All of this culminated to April, just last month, when I received a bone marrow transplant. That should be a post all on its own, but the long and short of it is that I received stem cells from a generous donor’s bone marrow, in hopes that it will do a better job fighting off the leukemia cells than my lousy bone marrow did. It also means that I have a brand new immune system, which is a vulnerable state for the body to be in. I’ll have many restrictions over the next 3-12 months: dietary restrictions, no restaurants, bars, or crowds of any sort, no swimming or being out in the sun. Basically anything that could conceivably get me sick is off limits. Which leads me to why I’m starting this newsletter.
Why I’m Writing This Newsletter
Now I live in a state of limbo — done with the majority of my treatment, but not quite given the “clean bill of health.” Waiting for day 100, month six, one year. My immunocompromised state leaving holes in my life and time to fill. And lots of thoughts swirling in my head about cancer, grief, gratitude, loneliness, connection, and a bunch of other stupid shit.
While I’ve been blessed to discover other young women who have had similar journeys, whether that be peer mentors or creators on TikTok, I’ve struggled to find a voice to totally relate to. There’s no “good” time to get cancer, but getting diagnosed in your mid-twenties, as someone who is extroverted, ambitious, and still figuring it all out, feels extra cruel. So my intention is to be that voice for myself, and maybe for someone else in my situation.
I also hope this will be a way to connect with everyone in my life while I’m so limited in my ability to see them and share experiences with them. The feelings I’m having are not exclusive to those with cancer, and maybe you will be able to relate or find insight in what I have to say. So if you know me personally and have made it this far, THANK YOU I LOVE YOU! LEAVE A KISS IN THE COMMENTS!
This diagnosis has changed me. Presently, I do not know whether for better or for worse, or if that’s even the question. I hope that through writing about it I may find out.
XOXO,
Carrie
thank god you’re a great writer in addition to being a fighter. consider me a Hot Girl Cancer loyalist
Babe wake up, new post from Hot Girl Cancer!! Add kisses from your friends in LA to your collection ❤️