Talking About My Cancer, and The Decision it Led Me To

Since I got to NYC I have spent a lot of time talking about my cancer diagnosis. I thought I was escaping the focus on my medical adventure when I left Vermont, but I should have known it would be impossible to escape. I don’t blame anyone for this and don’t discourage anyone from continuing the conversation, it was just not what I expected.

There are a few reasons for this. First was the fact that I hadn’t seen anyone since the surgery happened; every update was a medical recap. And second was the Cycle for Survival event. I can’t say enough how wonderful it was to be there, but an interesting side story was the light in which my experience was put. I was “a survivor.” I had been diagnosed with rare cancer – monophasic synovial sarcoma – and had been treated – surgery – and was now cancer-free.

During the whole process we talked about Tristen as a sarcoma, not as a cancer. These things are one in the same: sarcoma by definition is a cancerous tumor. But “sarcoma” is not as commonly known as “cancer,” so outside of the doctors, the c word has become more prevalent. That doesn’t change the fact that I still feel uncomfortable using that word. As Dr. Kalanithi put it, “there’s cancer, and then there’s CANCER.” Sometimes I feel like a cheat: I didn’t have CANCER, I didn’t have to go through radiation or chemotherapy, I didn’t have a years-long battle that took its toll on my body and my emotions… Or did I?

The whole time I’ve been thinking of my sarcoma as a quick process – diagnosis, surgery, 4-6 weeks healing, and back to normal life – when in reality it’s not. I started feeling the pain 10 years ago. Even though I didn’t know it was a tumor growing in my muscle, agitating a nerve once in a while that stabbed me in my side, that’s exactly what it was. I had already been dealing with a sarcoma for a decade.

“How did you discover you had a sarcoma?” I hadn’t even thought this would be a question because he popped out and said hi to the world. I was lucky he did. Some sarcomas don’t get discovered until the cancer has already spread, and if I had waited any longer its possible mine would have spread too. I was lucky he outgrew my muscle. I was lucky it was still contained.

And then I had surgery. 4-6 weeks healing was just for the incision and the mesh. The healing for the muscles that had large chunks removed is more like a year. And the close watch to make sure it doesn’t come back will continue forever. As my doctor pointed out to me on my last visit, this will affect me for the rest of my life. My battle with cancer may not be the typical struggle, it may be more of a passive watch, but it is not over.

I had cancer. I’m now cancer-free. I could not be cancer-free at any moment. At the same spot, at a different spot, or even a different cancer. I may be doing genetic testing to find out how susceptible I am to other cancers.

So my thinking has shifted. I have realized just how much a diagnosis like this resurfaces in even the most minimal ways (medical history forms and health plan enrollment are my enemies). And I have realized that I need to be responsible medically. This is not something that I can forget about, ignore and hope everything will turn out okay. For two years I have to be closely watched, and then it eases up a bit to every year. For 3-5 years I’m most at risk for it coming back, and then it’s a forever maybe. So for 2-5 years, I want to be near my doctors. I know there are great doctors all over the place, but I like the ones I have at DHMC. They know me, they explain things to me perfectly, they answer my phone calls and see me as soon as anything comes up.

So now, my sarcoma has decided one more thing: I am moving to New York City. I was back and forth between NYC and SF since my return to the US, another decision my sarcoma forced, but my medical needs tipped the scale. Who knows how many more times this will happen in the future? All I do know is that even though Tristen is physically gone, he will somehow be with me for the rest of my life.

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3 comments

  1. Good to see your sarcoma cured. God bless you with a disease free life.
    My husband had one surgery and then more mass taken out from the same thigh where he had 2 cm tumor. Now a few more remaining cells in the next small surgery next week. And then he would be sarcoma free. Like you. Hope so.

      1. Yes it is! And may you be cancer free for the rest of your life. Last week my husband had third surgery. They’ve now taken out any remaining cells. A relief…and hope it never comes back.

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