A Conversation About Survivorship

The first time I rang the bell after my 6 months of hell, I felt nothing. I watched as my nurses rallied around me and celebrated my “success” but inside I knew my fight wasn’t done. I tried my hardest to fake my enthusiasm but in the end I knew that I was just beginning my fight. I was scared of recurrence and I remember the voice of the nurse practitioner that dared to utter the words, “I haven’t seen anyone come back in my 17 years of working here.” Dealing with my second diagnosis her words would haunt me like a bad breakup. For a time I wondered if she had dared to tempt faith and this was God’s way of laughing at me.

My second diagnosis came on the day that I was expecting to be done. I was ready to cross the finish line. The thoughts that had lingered about not being done had been replaced with hope. I dared to allow myself to dream of what my future might look like. Due to a “slipping through the cracks” as a nurse would once tell me I found myself back in my oncologist’s office. Waiting patiently with the person who had stood by my side through it all, I was ready to be done. I was back in school and trying to push off the idea that my gut had told me something was wrong. My parents had reassured me, my partner had told me that it would all be okay. I had dared to go back to work and I began to pick up the pieces of my shattered life. Instead I crumbled as I heard the voice of my doctor telling me they found something.

My biopsy felt like a bad joke. I can still hear the doctor that asked me what song I wanted to play. I listened as Toto’s “Africa” came on the playlist as I asked the doctor to “surprise me”. His voice would echo in my head when he asked “why are we even bothering to biopsy this?” My lymph node had already shrunk and my doctor thought that if we waited another 3 months maybe I could try again before she made the next step. I made the mistake of daring to have a cold on the day of my pet scan. A consequence of the job that I loved, working with children made it feel like I was always battling something off. I proceeded. What I didn’t know or understand was that it would cloud my results. My oncologist wanted to wait, the tumor board disagreed and as a result I found myself with this doctor that thought I shouldn’t be there. In the end it was cancer and I found myself being thrust back into survival mode.

When the results came back, I was told that I was going to have to have this transplant. It led to a meeting at Stanford where I found myself in a haze of anger and frustration sitting across from a doctor that talked with me after answering my questions. I asked the question that had been burning in the back of my mind since my re-diagnosis. “What were my chances?”
He took a deep breath, one that told me that I didn’t want the answer, I mentioned the statistic I had read in the past. “10% of all Hodgkin’s patients end up needing the transplant and require further treatment” Then he mentioned that due to my circumstances and age group it was closer to 6-8%. The anger bubbled quickly.

In between spells of treatment I would hang on to the words that they said. One transplant later, I found myself returning to a world that I no longer recognized.

The second time I rang the bell it felt different. I sobbed ringing the bell as for once I felt like I understood the feelings of what it all meant. The bell became a landmark a chance to say “F*** cancer” and to celebrate my success.

My first year post transplant was a mess of hazy rebuildings. It was family members asking “are you okay now?” and trying to desperately rebuild what I felt like I had lost. I went back to school sooner than I was probably ready for. My doctor gave me the green light so I immersed myself in the books and tried to redefine what “survivorship” would mean to me.

Memories that I do have were telling my coworkers what fucking happened. All that was mentioned was that I was taking some time to battle some health complications. On a day that we were asked to give “quick speeches.” I decided to be done with the hidden looks and what I felt like were eyes on me. I jumped on my soap box and talked about myself.

“Hi. I’m Katie and I am a lot of things. I’m a writer, a jellyfish lover and a hodgkin’s lymphoma survivor. I had cancer last year and for those of you that don’t know, it could happen to you. Check your lymph nodes. The reason I bring this all up is because I recently went to Relay for Life”

My first year was a blur of rebuilding, I went to Cancer Camp. I began disconnecting myself from the cancer groups I had joined. Slowly but surely I wanted to be known for something other than being a “cancer patient” but little did I know was the first year would be easier in a haze of post transplant healing.

The real work was just beginning. My second year of survivorship came with feelings. I spent so long trying to make sense of my world that I found myself lost in the shuffle. The memories came back. The feelings of inadequacy were harder to battle and the wonderings of oh my god did this really fucking happen hit me like a ton of bricks. Survivorship my first year felt easy; it was a title that I convinced myself that I had somehow won. The survivors’ guilt snuck up and stole what little hope I had allowed myself to have. The triggers and anxiety were hiding in plain sight. I found myself lost in the haze.

While my body had felt like I had finally recovered, one of the things that I knew that I would be stuck with was infertility. In the process of determining if I would be able to freeze my eggs it quickly came to light that I hadn’t really had enough to begin with and was likely always going to have additional challenges.

When the haze wore off I was left with sadness in figuring out my next steps. My partner and I sat at different places with the same conversation lingering in the air. Planning for the future was hard and something that we had only dreamed of. For a while I refused to allow myself to hope for a world where I wouldn’t be sick.

My second year in survivorship, I finally allowed myself to dream. One of those things on the “when I survive list” was graduating from college. My dreams had been put on hold and my grades had suffered when I finally got diagnosed. Next year I will finally be able to.

The family dreams are still a mess of anger and sadness. In the past year we went from “not going to happen” to “what might it look like” to “when we start trying.” In some ways I feel like I’ve finally been able to move on post cancer. In others I still find myself feeling a bit lost.

When I think about the word “survivor” I think of the endless nights of lost sleep. I think of the anticipatory stress that came just before my transplant and I think of the feelings that I overcame. These days I find myself not identifying with the word, “survivor” but instead think of myself as someone that overcame.

In the end, there will still be nightmares about recurrence and anxiety that comes when my lymph nodes decide to make themselves known. But for right now, I find myself engaging in this idea of hope in that one day this won’t be my defining characteristic and I’ll be able to say:

“Hi I’m Katie and I am a teacher, a wife, a mother, a writer, and I am an overcomer”