Tristen

I Can Run Again

I went for run today. For the first time since Tristen popped out to say hello, I jogged along for 15 minutes with no pain.

I repeat: with. no. pain.

In my prior life, a 15-minute run would not make me feel very good. It would mean I was feeling lazy that day, or I’d had a few too many glasses of wine the night before. But in my new cancer-surgery-recovery life, a 15-minute run is a huge milestone. It’s a sign that things have improved. It’s a sign that I am inching ever closer to a return to my normal life.

As my feet moved along with beat of the music, my mind began to clear. I had forgotten how good exercise was for the spirit and the body, and just how much I had missed being active. Which is probably why, when my short run ended, I felt an overwhelming wave of sadness. Here I was, one day shy of 13 weeks after a major surgery, having just completed my first step towards the more active life that I was used to, and I was crying. What the fuck?

The only explanation I can think of is that for every happy step I take up the recovery ladder, I come face to face with a reminder of what just happened. I am only excited by this little activity because I wasn’t able to do so much for so long. And now that it’s becoming possible again, it’s like the weight of what I’ve gone through, the things that I say I am fine about, push back even stronger.

But I won’t let that discourage me. Because as I ran, proudly sporting my “JOIN THE BATTLE” Cycle for Survival shirt, I felt hopeful. I felt an elation that only physical activity can give me, I felt like I’d recovered a part of myself, and, perhaps most importantly, I felt like I’d overcome a bad stroke of luck that will in the end make me an even stronger version of me. And that is the feeling that will win in the end.

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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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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.

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.

Pathology Results

So I was totally wrong when I said I would have to wait until September 2nd for my pathology reports. About 2 hours after I posted my last update I got a call from my doctor. She had my results.

The margins are negative. This is priority number one, and it is a huge relief. What does this mean? They got it all out. No more surgery – Tristen is completely, officially gone.

The official size of the tumor was 3.6 cm. Even though they removed 7 cm, he was actually only 3.6, hence the clear margins. Anything under 5 cm is considered small and typically means no radiation. This means, despite appearances, he was actually a small tumor.

Those are two incredibly great pieces of news. They’re exactly what everyone was hoping for. Typically with those results there is no radiation, the surgery having been enough to be considered curative. However those aren’t the only results I received. Continuing on…

The mitotic rate (how fast it multiplies) is 24. This is considered a high grade, aggressive tumor.

While clear, the margin at the skin was close. She did take some skin but not all, in order to avoid doing a skin graft, so we knew this would be tight.

The combination of a high grade tumor and close margin typically means radiation. So you see the dilemma now – half the results say no radiation, half say yes. So what’s the consensus?

The tumor board is going to review me again. With the new information they’ll form a recommendation for my next steps. Right now it’s a 50/50 chance of radiation. Radiation can only occur in an area of the body once, so if we radiate now and it somehow comes back (Tristen missed me too much) we won’t be able to radiate again next time, so surgery will have to be enough. If we don’t radiate now and it somehow comes back (that bastard) we could radiate me then to make it smaller before surgery, making it a less invasive surgery. This is just considering the off chance that it comes back, but since synovial sarcoma is so rare we unfortunately have no information about the risk of recurrence. The other consideration is whether or not to radiate someone at my age and the effects it could have on me. Some people think it’s better to avoid radiation at a young age, others think I can handle it at a young age and it’s better to give me a higher chance of non-recurrence.

Either way radiation would be a preventative measure. The tumor, the cancer, is gone. I will have ultimate say once they tell me their referral. I have to wait about 2 weeks for that.

In the meantime, I have my first Physical Therapy appointment on Thursday.

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.

I’m Home

The surgery went well. At least that’s what they told me. All I knew when I woke up was PAIN. SERIOUS PAIN.

People said I would wake up from the anesthesia (I had general, so I was totally out) and not even know that the surgery had begun. I wish this was the case. I knew very well that something had happened to me. I opened an eye so the nurse would know I was awake, it was my only hope of contacting her. I did not remember there was a call button on my bed. I didn’t even know anyone had told me that. My eye move worked though and when she came over I was able to get out one word: pain.

She wiped my tears and pumped me full of something, lots of numbers and letters I had no hope of understanding, and I felt like I was floating on a cloud being showered in tingly confetti as I drifted off to sleep.

After a couple of rounds of coming to and passing out again, a swap out of the epidural they had given me for a much higher dosage (pregnant women heed my word: the epidural is a wonderful invention, get it), and my first and hopefully last experience with voiding in a bedpan, I was able to finally leave the recovery area and move to my room. My parents saw me there, filled me in on some of what my doctor told them and life outside the OR, and I fell asleep in the middle of the women’s gymnastics beam event final.

The first night went surprisingly well. In between vital signs checks, IV bag swaps, and pee breaks, I slept steadily the whole night. For my 5 am bathroom break I even managed a little walk to the neighboring reception desk and back. In normal life this 20 yard shuffle would be an embarrassing attempt at movement, but 12 hours post-surgery it was an accomplishment. By the time my doctor came to see me, around 9 am or so, I was sitting up in bed watching TV, having already consumed a breakfast of scrambled eggs and toast.

Then she told me it went well. They were able to get all of Tristen out, cleanly. He was, however, larger than anticipated. Instead of sticking to his home in my outermost muscle, he set up shop in the neighboring #2 muscle as well, so they had to take some of that one out too. Good news was that he didn’t touch the #3 muscle or my rib at all. Bad news was I now have 2 pieces of mesh in me, one in each muscle, and a permanent convex side. What used to be a huge bump has now become a sinkhole.

Now we wait for pathology. They will measure the cell sizes of Tristen and the margins of the muscle/tissue extracted with him, and that will determine whether or not I go through radiation. I’ll know in 7-10 days.

After our chat I talked to Physical Therapy, who taught me how to properly get in and out of bed so I don’t use what’s left of my abdomen muscles, and the Pain guys, who decided we could turn off the epidural and see how I did just on Oxy. Apparently I did just fine, and by 5 pm I was discharged and on my way home.

This does not mean I’m all better by any means. I still have a drain hanging from my side leaking red fluid that has to be emptied and measured consistently. As soon as it’s less than 30 cc for 2 days straight I can remove it, but we’re still seeing 75 cc so it’ll be a few days. I still have to take Oxy and Tylenol or Ibuprofen every 4 hours, although I’ve gotten it down to 5 hour intervals and will continue to wean myself off of it. And I still have to make a concerted effort to breath deeply, take shuffle walks every few hours, and shower. But at least I can do this all from the comfort of my home.

My family has been amazing. From 3 am pill doses to tetris pillow configurations they are there for me above and beyond. My parents, my sister, and her husband have all made this so much easier to bear, a thank you can’t even begin to cover my gratitude. My friends, I’m sorry I haven’t been near my phone to thank you for your support too. From the beautiful flowers that made it to my room before I even did to the endless goodybag of candies and trashy magazines, you guys are seriously the best. And to everyone who reached out to me after my last post, I am amazed at the wonderful, kind-hearted people that I have met in my life and thank you all for your words. They meant so much to me.

I’ll continue to update as I find out more and as the healing process continues.