Month: September 2016

6 Weeks Post-Op

Today is 6 weeks since my surgery. Physically, that means I’m healed. Mentally, it means so much more.

My surgeon told me I would be healed in 4-6 weeks. What that means is that tissue has started to incorporate the mesh into my body and the incision is a securely closed scar. It means that I am no long at risk of popping a suture. It means that I can start to resume a normal life.

Start to resume.

It does not mean I am totally back to normal. I am still in a healing process that is beyond the surgery. My muscles are adjusting, my range of motion is increasing, but I am still limited. I can do some warrior yoga poses now and quicken my walking pace, but runs are still 6 more weeks away, as is any attempt at a routine yoga class. Cycling is on hold for now too, as is lifting anything more than 10 lbs. After that 12 week marker I’ll be able to resume more movement as long as it doesn’t require quick, hard action from my right side. Think of someone throwing a ball and saying “think fast!” and having to grab it with my right hand. I can’t do that. Yet.

Which is why I’ve set the personal goal of learning how to play tennis. Tennis is pretty much the antithesis of what I’m supposed to be doing right now, especially since I’m right-handed and the tumor was on my right side, so I think the day I can play tennis is the day I’ll be fully healed. Apparently that is a 9-12 month goal.

I had my last doctors appointments on Thursday (for now). Four appointments in two days, I covered everything from Physical Therapy to a chemo talk with the sarcoma expert to what the eff is the sudden rash that showed up and how to get rid of it. It was exhausting, emotionally draining, and, in the end, wonderful. The odd rash that showed up was a delayed reaction at 5 weeks to the glue – strange to everyone who saw it – and is going away with the strong cream the dermatologist gave me. My PT was thrilled at my range of motion and was as happy to give me some yoga to work on as I was to be able to do some yoga.

The sarcoma expert and I talked about the decision to not have radiation or chemo, why chemo would be the choice in the future but why we should avoid it, and the idea of talking to a familial cancer specialist. Chemo is not as effective on synovial sarcomas as it is on other types of cancers, and it could actually give me a different kind of cancer in the process. It’s not worth it for someone my age who had the surgical results that I had. According to a metric devised by some doctors at Memorial Sloan Kettering, I have an 80-90% chance of staying tumor-free. That is fantastic news. Of course it could always come back, and in more places than just its original home, but at least the odds are in my favor. It’s most likely to recur in the first 3-5 years after surgery, hence the close monitoring. I have a follow-up MRI/CT appointment in January. At this or my follow-up PT appointment, I will see a familial cancer specialist. Since my grandfather also had a sarcoma, it’s possible I have a gene that means I’m more prone to getting cancer. We will discuss genetic testing to see if I have it; if I do, I’ll have to be tested for all kinds of cancers for the rest of my life. I’ll deal with that when I need to.

For now though, I am free. I can leave Vermont, I can get on a plane, I can get a job, I can move on with my life. This is a momentous mental shift. For months I have been waiting – waiting to find out what I had, waiting to schedule a surgery, waiting to heal. Even before the waiting began was the decision to return to the United States to deal with Tristen. Ever since he first appeared 7 months ago, my life has been dominated by Tristen. And now he is gone, really gone, and my life is mine again.

Vermont was the best place to go through all of this. The support from my family has been incredible, the tranquility of the setting perfect for healing, and the doctors and hospital experience at Dartmouth-Hitchcock Medical Center the best I could have ever hoped for. And in the grand scheme of life, the three months I spent here dealing with my sarcoma will seem like the blink of an eye. But I will forever be grateful to everyone here. Thank you for getting me through this.


No Radiation

I found out last night that 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.