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.


Recovering with the Olympics

Recovering from a surgery that just removed parts of two muscles that I will never have back while watching Olympic athletes in the best shape of their lives compete in intense physical tests could go two ways.

Option 1: depressing. I could lay there remembering all the sports I used to play, wondering whether I’ll be able to play them again one day, even though I know the doctor said I’ll have full mobility again, but I currently can’t even sit up without rolling over on my side and pushing up with my arm so that seems very far away.

Option 2: inspiring. I could listen to the stories of these athletes who have overcome adversity, who have trained every day, who have dedicated years to achieving their goals, and I could think about what I want to do when I’m able to fully move again, what sport I want to get back into or discover for the first time, what hike I want to accomplish, what bike ride I want to be ready for.

I chose Option 2. I will not let this get me down. Tristen is gone, and for the first time in a decade I won’t have pain in my right side when I try to do the simplest of athletic activities. This recovery period is limited, and while I’ll carry the mark of him for the rest of my life, I will not carry the pain. When I am fully recovered, have completed my physical therapy, and finally feel no more pain, there are no limits to what I can do.

I am already making a mental list of physical feats I want to accomplish. It all starts on September 30th, when hopefully my PT clears me to get on a stationary bike and join team Ginger Strong in the fight against rare cancers at the NYC Cycle for Survival. Of course I’d like to run and play on a team again, but of all the things I did, I miss hiking most. The scenery, the sense of accomplishment when you summit a peak, the hours or days spent just appreciating this earth – I want to hike the Long Trail, I want to hike the Lost Coast, and one day I want to summit Mt. Kilimanjaro. Really I just want to be active again. Get out there and sweat, feel like my body has overcome this sedentary phase and can take on anything I challenge it to.

In the beginning of the Olympics I was watching Women’s Rugby and suddenly heard two words I never thought I’d hear in the Olympics: synovial sarcoma. One of the USA women, Jillian Potter, was diagnosed with synovial sarcoma in her late 20’s. Hers was Stage 3, mine is Stage 2, so our treatments have been different (Jillian had to go through chemo, which I have luckily been able to avoid, although I may still need radiation TBD), but here she was, two years later, competing on an international stage in a seriously tough sport. When I first saw her story, I broke down. Here was a face with the diagnosis, images of a hospital, talk of chemo making her weak – at that point I still didn’t know if mine was contained or not, so I’d been burying the worry that it had spread to my lungs and I too would need chemo. But after I let that fear and sadness wash over me, I let it go, and found inspiration in her story. If she can come back from this thing and be there, I can come back from it too. Right then I became a US Women’s rugby fan.

The Olympics are an amazing time when our world joins together to watch one thing. Not news, not violence, but good old-fashioned athletic competition. People from different countries help each other, cheer for each other, and celebrate their victories together. For a traveler who loves the world and a patient recovering from surgery it was the best possible thing to watch last week.