Getting diagnosed with Rare Enlarged B-Cell Burkitt’s-like Non-Hodgkin’s Lymphoma at 25-years-old, wasn’t something I expected. I had a boyfriend (with a whole engagement timeline and everything), I was a working actor in New York City, and I had a ride-or-die trio of friends.
When I emerged from treatment, I no longer had a boyfriend, I needed to find a new job, and not all of my friends were as ride-or-die as I thought.
I wasn’t prepared for the loss I would face on the other side of recovery — not just the losing of others, jobs, and things, but the loss of my individuality as a person. I became this ‘other’ where I was not quite a person. I was a patient, but I didn’t have a full-fledged life.
There’s an image or idea I had around cancer and what treatment would look like.
Doctors told me that I would probably lose my hair, I would be sick, I wouldn’t want to eat, I would feel weak, I would be depressed, I would have hormone imbalances, I would have all of these things happen to me from treatments.
They could tell me all of that, but they couldn’t (or they wouldn’t) tell me that some of my family might betray me, some of my friends might not hang around, my boyfriend might break up with me because they’re dating someone who doesn’t have cancer.
When you get sick, you become a cancer patient instead of a whole person, and the mission becomes “don’t die” instead of “fully live” — especially when you’re not expected to survive. And of all things, it felt like my sexuality was the first sacrifice on the altar of my treatment.
I was getting mixed messages and it was disconnecting me from my body
In the beginning, I was told it was good to practice sexual release as self-care–keep those literal juices flowing. A nurse said that the backing up of the pipes could cause damage and functionality issues later in life, so I was to avoid clogging up my system — so to speak.
Another nurse later told me that I “shouldn’t” have release time because my low blood counts could burst a blood vessel in my brain and hemorrhage to death. The image of me being found in that position was stuck in my mind.
It was a very confusing time.
Being over and under informed was normal.
A lot of my confusion came from the inconsistency of information. Sometimes I was given information I didn’t need, and other times information that would have been helpful was withheld. To be clear, I don’t believe this was intentional, but it did have a significant impact on my mental health then.
One case of receiving more information than I needed was when my oncologist dropped a bomb on me in the middle of my follow-up appointment. The fact that I was a sole survivor meant two things… “Wow I’m special and I get to live against all odds,” and, “Oh Shit! If this comes back, I’m fucked because I AM the protocol for future cases.” If my cancer came back, there wasn’t a clear way to handle it.
The bigger problem was that this wasn’t information I needed or wanted to hear. I wasn’t sick and I had no signs of recurrence. Instead of getting a thumbs up and a sticker for a good appointment, we opened a can of worms for the possible worst-case scenario that was unnecessary to noodle on.
It felt like I was sitting on a chair in front of a black hole just watching it expand and grow. The news literally took my breath away.
Simultaneously, there were times a little more information could have saved me some mental or emotional distress.
Part of my treatment was a stem cell transplant. What I didn’t know was that when you have a stem cell transplant, you will expel your entire mucous membrane through one hole or another (or both). This is not something I was told. I was in the full throws of my stem-cell chemo course, and I felt sick. I leaned over the side of the sofa in my room and threw up GALLONS of emerald green liquid. It was an alarming amount.
My mom is a health care professional and said, “Ummm that doesn’t seem right,” and called for a nurse. The nurse showed up and only then was it explained to me what was happening. Through the rounds of liquid expulsion from my body, I managed to throw some sass and say, “A warning would have been nice.”
Whoops! There’s my PTSD
I didn’t realize I was going to have PTSD until I started experiencing the symptoms. There were certain kinds of hand sanitizers that as soon as the scent reached my nostrils, I would be warped immediately back to the hospital. I also had phantom pain where my tumor used to be, and I’d have phantom itching where my port used to be. To this day, I cannot have brown rice without feeling the need to gag.
It does get better
There are so many things that aren’t talked about around cancer treatment, but it did get better. I’m officially 10 years cancer free and the lone survivor of the particular kind of cancer I had. I rebuilt my identity and now have a fulfilling life that I love.
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This Post is republished on Medium.
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Photo credit: iStock
The post I Was the Sole Survivor of a Rare Form of Cancer and I’m 10 Years Cancer Free appeared first on The Good Men Project.