Month: October 2016

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.

So Long TravelAbrodge-Tristen-Hair

When I was 17 I donated 10 inches of hair to Locks of Love. I had always had long hair and knew I had plenty to donate, so, prompted by the suggestion of a friend that we do it together, I sent in my long locks to help a kid who had lost their hair to cancer treatments.

12 years later, I found myself thinking that I was going to lose my hair to cancer treatments. I went through a period when I was really convinced that it had spread beyond the tumor and the only solution would be chemical. I realize that not all chemo results in hair loss, but when you’re still in the questions part of being told you have cancer your mind can’t help but go there. It took me 2.5 years to get hair this long again, and it was all about to be for nothing. So I started wrapping my head around the idea of a hairless me, and for a while a pixie haircut me, and it actually didn’t take long to feel okay about it. It’s just hair, after all.

I didn’t have to go through chemo. The cancer was localized, removed with surgery, and no chemicals were necessary for my recovery process (with the exception of that fun week of oxycodone). But other people still did have to go through chemo. Millions of women around the world have had thoughts like I had, and actually had to go through with it. Suddenly my long hair didn’t seem so great anymore.

So I cut it off. My hair will grow back, fairly quickly, but those women may not have that option. So this time I sent it to Pantene’s Beautiful Lengths. They, partnered with the American Cancer Society, make real-hair wigs specifically for adult women who have lost their hair in their battle with cancer. I don’t know these women, but I feel like, in some way, they are my kindred, and I want to help them.

That’s not the only reason I cut my hair off. The last time I cut my hair was June 2014. Yes, you read that correctly. Two and a half years ago, the day before I left to travel the world, I cut my hair the shortest I’ve ever had it. It was for maintenance; shorter hair seemed easier to deal with on the road. As my travels continued so did my hair growth. Then when I came home, I was too distracted and uncaring to go for a very necessary trim. So I’ve been carrying around 2.5-years-worth of hair.

My TravelAbrodge hair. My cancer hair.

It’s time for a change. This last phase of my life was simultaneously the most incredible and most difficult so far. From achieving my life’s goal of long-term solo travel to being told I had cancer, my highest highs and lowest lows have happened in the past 2.5 years, while this hair was growing. And now it’s come to an end. So it’s time to move on, start over, and this is just one little way to begin again. Goodbye TravelAbrodge-Tristen-Hair. It’s been quite the journey.

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I Rode in Cycle for Survival’s Times Square Takeover and You Should Too

Friday night I rode in my first Cycle for Survival Times Square Takeover. It was everything.

I heard about Cycle for Survival from my friend who has participated in it for years, first with and then in honor of his fiance, who battled rare cancer. So when he found out about my diagnosis he wasted no time convincing me to come ride with “my people.”

Cycle is an event put on by Equinox and Memorial Sloan Kettering that raises money to fund rare cancer research – 100% of the proceeds are donated to MSK. In 2016, Cycle raised $30 million, and $2 million of that went to sarcomas. Funding research like this is the most effective way we can learn more about these diseases, and in the process take a stand against them. The work being done at MSK is saving lives, and I heard some of those stories first-hand on Friday night.

My doctor was trained at MSK. When she and her Dartmouth colleagues were discussing whether or not to radiate me, she also asked the opinion of her former colleagues at MSK. And when we were reviewing the only metric that attempts to predict my chances of recurrence, it was something that had been developed by doctors at MSK. So you could say I have a connection to what Cycle is all about. Plus when they heard that I was recovering from a sarcoma surgery, I received the nicest card from a dozen people I had never met before sending me good vibes, along with some great Cycle for Survival swag.

My friend was right, I was part of a special community now. One that supports each other, that cheers each other on through the good and the bad, and that understands how it feels to be told you have rare cancer.

I rode with that community in Times Square on Friday. The event was more than a cycling class, it was a party. The energy was high as the instructors led us through group chants and singalongs on our bikes. A band played along with the DJ and dancers moved to the same beat as our legs. It was a struggle to not go all out – I was encouraged against participating in the event since I’m still in the healing phase and technically not supposed to do any very vigorous activity, aka no more than some brisk walking, but there was no way I was not going. So I held back as everyone around me bounced and sprinted, and toward the end had my right foot resting on the bike while my left foot kept the pedals moving. I did what I could my first time around, only 6.5 weeks after surgery, and I would do it again if I could. Just being there with other supporters, seeing what people are doing to help those of us who have been touched by rare cancer, was amazing. Next time, and there will absolutely be a next time, I will be healthy enough to go all out.

Cycle for Survival is one of the best things I’ve done, and I encourage everyone out there to get involved. There are events all across the United States and 2017 registration is open. Please, sign up, and help us beat rare cancers.