How Do You Survive Cancer Survivorship?

Survivorship: it’s a positive word that elicits the idea of success, winning and, as a four-time cancer survivor myself, the idea that everything is fine.

The reality for survivors is much different and my personal experience has even made me feel shunned and guilty by others who are neurotypical and dismissed. Survivors are constantly walking the tightrope of continuing to live.

When I was diagnosed with Hodgkin lymphoma as an 11-year-old, I never thought about the late-term side effects. What I wanted to hear was that I was going to live. But if I survived, how was my life going to be?

Yes, there was a reprieve for 12 years after a relapse right after radiation treatment in 1985, but there were constant x-rays and check-ups for the first five years and the anxiety of waiting for results all the time left me with a legacy of post-traumatic stress disorder (PTSD).

Let’s move to 12 years later. Was I warned at age 11 that I was at a higher risk for breast cancer down the road? Yes. But at that point and age, I just dismissed it. Here I was at 25 with a diagnosis of breast cancer in my right breast! I didn’t even focus on the fact that it could kill me. This was typically a disease for women who are older than me, so I thought, and now would have to have my breast removed. I couldn’t wrap my head around what was going to teach me the true meaning of survivorship.

Survivors would have to constantly be on alert. Survivors would have to struggle to find doctors who understood their long-term side effects. Survivors would get criticized by doctors or be on the receiving end of ridiculous statements like, “Wow you’ve been through so much. If I was you, I would have just given up.” (By the way, that was my anesthesiologist who I brought a grievance against.)

As life moved on, I was able to achieve so many goals and at the same time, my survivorship kept knocking on my door and ringing my bell or trying to climb through my window. I would get kudos for being such a strong woman and all I could think of was that this was not a title I asked for nor wanted.

I met my group of friends at Hodgkin’s International some time ago and for the first time, I felt like I was on the right planet. One where others were just like me, where we could share our stories and empathize with the pain, worry, sadness and handicaps that come with survivorship.

It seemed that the longer I lived, the more of my complications from chemo and radiation were coming back to haunt me. On Nov. 6, 2023, I had a massive heart attack and died. I was brought back by Duke paramedics, and thankfully my heart hadn’t broken down beyond repair. With the help of my spiritual beliefs, Duke doctors and my son who is my health proxy, I survived and got yet another chance with a new heart.

Yes, I am proud of being a cancer survivor, but others misunderstand that we are not exactly fortunate, lucky or blessed. Survivorship is an entirely different way of life and the fight is for your entire existence.

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