moving on

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.

No Radiation

I found out last night that I do not need radiation.

I DO NOT NEED RADIATION!

This is the huge final step I’ve been waiting for. After I reviewed the pathology results with my doctor it sounded like I had a 50/50 chance of radiation. Typically for tumors under 5 cm and clear margins there is no way they would recommend radiation, but for high grade tumors – very aggressive, high rate of multiplication – they usually do recommend radiation. I was facing the possibility of having to make the final decision myself with no clear yes or no from the doctors.

A little background on the radiation factor. Radiation is an x-ray treatment that is targeted at a specific area. The treatment would be 5 weeks, 5 days a week, 15 minutes of radiation a day. While it’s possible to do radiation treatment before or after work, or whatever other activities are going on, it is still a month plus commitment to shooting up your body with harmful rays almost every day. And it was not an option to wait and do it in six months or a year. The radiation had to be done immediately to be effective, so my window was at 6 weeks post-op, when the mesh has healed into my body and the wound safely closed up.

Radiation would be purely preventative; the tumor is gone but just in case a rogue cell went off to find home (Tristen’s cells were poorly differentiated, meaning they didn’t look like where they came from like normal cancer cells do, so it’s possible a few could have felt lost and confused and went to find where they belonged) and was wandering outside the margins, we would zap it with radiation. This would help lower the possibility of Tristen’s younger brother showing up in a few years. However it was still possible he’d show up anyway even with radiation.

Obviously exposing your body to strong x-rays is cause for concern. It could damage the skin, tissue, muscles, organs, and bones in the nearby vicinity. We had to weigh whether the harm would be greater than the help or vice versa. Some people think because I’m young it’s better to keep me away from radiation so it doesn’t have long-term adverse affects on my health. Some people think because I’m young it’s better to do it now because my body can handle it. And then yesterday I found out that radiation could also damage the mesh that was just put into me. Why would we want to weaken the thing that’s now holding me together?

Then there’s the consideration of what happens if it comes back. The rate of recurrence is really unknown for synovial sarcomas. No matter what we do now, my Hulk Hogan-level aggressive cancer cells could decide they’re coming back anyway. But if they do come back they’d be at Terminator levels. Those bastards would really want to survive. So if Tristen II shows up and we had already radiated, then a) what a waste of time, and b) we can’t radiate again. Radiation can only occur in a place one time. So not radiating now means that we’ll have that card in our back pockets if we need it later. But also as I found out yesterday, if Tristen II does happen, it’s possible they would recommend chemo instead of radiation, thinking he’s so damn persistent that his cells could have moved beyond my abdominal obliques so let’s do a full body treatment to really cover our bases. All recurrence treatment options would include another surgery, of course.

So all of this was talked about in Tumor Board on Tuesday. Tumor Board is where all the oncologists discuss cases to come to a unified treatment decision. In addition to Tumor Board, my results were sent to the Mayo Clinic for a second opinion e-consult. And for a third opinion, my doctor talked to hear colleagues at Memorial Sloan Kettering, aka the leading sarcoma experts in the country.

Tumor Board: Every person said do not radiate except one, the radiologist, who would have voted yes even if I didn’t have cancer just because it’s his thing. Their reasons: small tumor, clear margins, young person who does not need harmful radiation rays to not only harm her body but the mesh we just put in.

MSK: Do not radiate. Same reasons. And not only should I not radiate, but if this comes back I should have chemo instead.

Mayo Clinic: I still don’t know. They’ve had my info since Labor Day but we haven’t heard an answer yet. It’s unlikely they would recommend radiation, but it’s even less likely that their recommendation would change my mind.

In the end I have the final say. But with the best oncology doctors on the East Coast – Dartmouth and MSK – saying don’t do it, why on earth would I decide any other way?

“So, does this mean I’m done? When do I see you again?” “Yes, this means you get a break. I’ll see you in 4 months for your MRI.”

I get a break. Even though I want to say I’m done, I know I’m not really done done. I have two appointments next week, one with the sarcoma specialist just to make sure it’s healing ok and I know my next steps, and one with my physical therapist. Then I have to keep up my exercises and see a physical therapist probably once or twice a month. And for the next two years I need an MRI and CT scan every 4-5 months. If they stay clear, then I go down to once a year. For the rest of my life.

I will never be totally free of Tristen. The dent in my side will lessen as tissue forms around it and the scar will continue to diminish to a fine line, but they will still be there. My monitoring scans will reduce from every 4 months to every year, but they will never end. But today, with the immense relief of not having to go through 5 weeks of radiation, for the first time since this all began 7 months ago, I feel like I can finally start to move on with my life.