I need to clarify something. I don’t write these pieces looking for sympathy. These are observations about what it’s been like for me to go through a cancer diagnosis and stem cell transplant. My first intention in sharing these thoughts is to get them out of my head.
My other intention is to connect. I know there are people out there who, like me, have found the experience of diagnosis and treatment profoundly changed them. There are also people who care for someone going through this - their lives are changed, too.
During the pre-admittance appointment to discuss all the details of a stem cell transplant, my case manager said something that gave me goosebumps.
“Once you have the transplant, you become a transplant patient for life.”
It’s never over and done. My body chemistry has been permanently altered. Even my blood type has changed from O+ to A+. My hair grew darker than it’s ever been. And I feel different.
In my last post, I wrote about a Graft vs. Host Disease (GVHD) flare-up I was having. I ended up calling the transplant clinic, and they put me on antibiotics and 30 mg. of prednisone. While I’m glad there’s a treatment, I hoped I wouldn’t need it. I wanted to power through. I thought I could manage the symptoms by applying cream to the affected area.
However, the nurse practitioner disagreed because the rash covered over 50% of my body, and my arms were densely populated with layers of bumps. She suspected this outbreak was most likely the result of a couple of things.
I was out in the sun for longer than I should have been. I had on sunscreen but should have also been wearing one of my SPF 50 shirts. I’d become complacent and wanted to feel the wind on my skin while we took a boat ride.
The second thing was the swollen and sore lymph node in my neck, which was accompanied by a constant headache. I get the weirdest upper respiratory infections ever since the transplant. The symptoms seem benign until suddenly they’re not. When I spiked a fever, I knew it was time to call the clinic.
Right here, I need to stop and say a few words of praise for my care team at VCU Health. They have never let me down. They’re always available to discuss any concerns I have, and they listen. They are genuinely some of the best medical professionals I’ve ever been exposed to—and I’m a doctor’s daughter.
Many of my fellow patients prefer the word thriver over the word survivor. The thinking is that we don’t just get through the treatment, but we keep getting better. We don’t just cross the finish line and stay there. We go back out into the world and continue to build our lives.
The definition of survive is to continue to exist despite hardships. The definition of thrive is to grow vigorously. To be healthy and strong.
I wish I could find a word between those two. To survive doesn’t inspire contentment. It’s more about acceptance. And the word thrive feels like a lofty goal.
Striving isn’t the right word, but it does reflect the time between surviving and thriving. Do the words have to rhyme?
As a cancer and transplant patient I feel like I’m in a constant state of recovery. Even though the treatments seem to have worked and I’m in remission, things like this outbreak of GVHD set me back. It’s now completely evident that I will continue to live with the aftereffects forever. These outbreaks can happen again. And again. And again.
Just as I get comfortable and try to return to how my life used to be, something always seems to remind me of my limitations. It’s so tiresome.
But do I want to return to a life where I don’t pay attention to every nuance of my health? Do I want to return to a life where I don’t appreciate the little things as much? Do I want to go back to a life where I don’t understand my mortality as well?
No, I don’t.
So, I guess I’d rather be a person who accepts my current state for what it is. I made it through chemo, radiation, and stem cell transplant and am still living. I know others who weren’t so lucky.
The cancer diagnosis alone is a trigger for trauma. It’s knowledge about what could kill you. It’s the possibility of death sooner than expected. Your expiration date is looming.
As I write, the word crusader popped into my head. I looked it up, and one definition said, “a person who works hard and campaigns vigoursly for a cause.” Hmmm, campaigner is a good word, too – “a person who actively promotes the goals of a cause.”
I guess feel a bit like a campaigner these days. I’m constantly designing goals to help me feel stronger and more active in the world. I go to my appointments, have lots of tests, pay attention to my medications, keep a journal, and volunteer.
I don’t think there’s one word to describe my current state of being. It reminds me of the quote:
“No matter where you go, there you are.”
Did Confucius say that? I remember it mainly from the movie The Adventures of Buckaroo Banzai Across the 8th Dimension (1984). The main character said it in response to someone being mean. In my situation, I think it’s more about accepting my current state of being.
When I write these pieces about my experience, I’m trying to promote the idea that the aftereffects of cancer and transplant aren’t unique. Hopefully anyone who’s gotten a life-threatening diagnosis of any kind can relate.
I didn’t win any battles, and I don’t simply want to survive. Instead, I want to use all I’ve learned to make a difference in this next chapter of my life, no matter how long it is.
Surthrive? Always rooting for you! ❤️