Evey: “You did this to me? You cut my hair, you tortured me… you tortured me!”
V: “You said you wanted to live without fear. I wish there was an easier way, but there wasn’t.”
–V For Vendetta
A month ago I logged in to my medical record to check the results of a PET scan part of a neurologic workup my oncologist ordered. I had called his office about the results, but as the end of the day neared I become inpatient waiting to hear back. All of my other scans had been normal, and I assumed this one would be, too.
I logged in and opened the radiology report. I scanned down and saw this:
There is a triangular shaped mediastinal soft tissue prominence, which although it has the triangular configuration of thymus, has increased in size along with interval increase in FDG uptake.
I paused, confused. My head tilted sideways. My fingers lifted off the keyboard for a moment. I scrolled to the bottom.
Impression: Local recurrence is likely.
I closed the report and sat for a moment. I waited for my heart to stop beating. It didn’t, so I paged my doctor.
He called back almost immediately and reassured me it was “probably” not a relapse. Most likely, he said, it was a condition called thymic hyperplasia, where the thymus grows abnormally large in response to chemotherapy. We don’t know for sure, he said. We would need to get a repeat scan in a month to see if it was growing.
At first we were both reassured by the fact I was not having any symptoms in my chest. The next week, however, I started feeling sicker. I hoped it was anxiety, but the feelings were eerily similar to what I remembered from when I was first diagnosed. My heart would randomly start racing, even when I was sleeping. I felt like I couldn’t catch my breath. My chest felt tight, like it was being squeezed.
When I told my oncologist these symptoms, he was concerned, and urged me to move my CT scan up sooner. But I didn’t want to. If I had relapsed, there was nothing I could do. I still had time that fear was not going to take away from me.
When I was first diagnosed with Lymphoma in December of 2013, adrenaline kept me going for the first few months. I ran out of gas and spent the next six months in free fall. Every day was a nightmare from which I couldn’t wake up.
A crucial difference between being ill and being close to someone who is ill is that if it is not you, there is always escape. You can be close to the fear, you can touch it, you can assuage your curiosity, but you can always turn away when it’s too much. For me, there was no escape. I waited for the fear to kill me.
But it did not—days passed, then weeks, then months, and now almost two years. New insults were thrown at me faster than I could brace myself. They are still thrown at me now. I lost my hair, my body, my beauty, my work, my mind. I lost relationships, I lost family. I lost my purpose, my confidence, my autonomy, my ego. I got some of those things back. Others I got back only to lose again. I make mistakes, and I am wrong; I am humbled by my smallness and insignificance.
But—I am no longer afraid. Not because I am brave, but because the fear ran out. I experienced every nuance and nook and cranny of fear until there was none left. Now, there is only death or courage; I am still alive, and so… well, you get the idea.
In the last week I took my puppy to the park, I walked to the ocean, I played the guitar and ukulele for the first time in a year and a half. I went to my residency retreat in Lake Arrowhead, I made new friends, I reconnected with old ones. I fired a shitty employee and hired a better one. I asked for help. I gave advice. I went on some dates and told four men “no” and one man “yes.” I watered my plants, because hey, if I’ve relapsed I’m probably not going to remember to water my plants for a while. I wrote all of this post, except the end. Then, this morning, I went to UCLA for my follow up CT scan.
The report reads:
Interval decreased size of triangular shaped soft tissue in the anterior mediastinum.
Impression: May reflect thymic hyperplasia. Recommend close attention on follow up imaging.
So I am still here. I live to fight another day. I live to live another day.
Photo by Tess Mayer