Month: August 2016

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.


How I’m Doing

It’s been a week and a half since surgery and the number one question I get now is, “how are you doing?” I said I would use this blog as my forum to update everyone, so I figured here is where I should answer that question.

I am doing well, thank you for asking.

Last week was focused on recovering. Lots of time on the couch watching the Olympics or at the dining room table coloring in my Landmarks of the World coloring book (it was a great time for adult coloring books to become popular). I was on Oxy every day plus Ibuprofin and Tylenol, had a drain hanging from my side leaking red body fluid, and was working on breathing deeply and walking to the end of the street and back.

Now, I haven’t taken so much as Tylenol since Sunday morning. This isn’t to say that the pain is totally gone, it’s just changed enough that it doesn’t need medication anymore. The post-surgery discomfort was at first replaced with shoulder and neck pain from sleeping on my back – which I still have to do until Monday – and has now turned into a subtle but constant feeling of tightness. Imagine what it feels like when you pull a muscle, or try to touch your toes when you can’t – the feeling that your muscle has been stretched to its limit and is at risk of working too hard. That’s what I feel all the time in my side. My muscles are still adjusting to the mesh, trying to pull back against it, against where they were cut in half. This is what I assume I will work on with the Physical Therapist once those sessions start. But for now I’m still being very careful about how I get up and down, not lifting anything heavy, and watching my posture while sitting and standing.

As for the drain, well that’s a fun story. Sunday late morning it just stopped working – the suction wouldn’t stay and it was suddenly hard at the end closest to my body. I called the doctor’s office to see what I should do and while I was waiting it fell out. I repeat, the drain FELL OUT of me. Onto the living room carpet. I stared at it in shock for a second, then calmly gathered it and my medications and got in the car. On the way to the Bennington ER the General Surgeon on call got back to me and told me that it was totally fine, I could go to Bennington if I’d like so they could remove the suture that had been holding it in, but there was nothing to worry about. Apparently this happens sometimes. Would have been nice to know. Long story short, because I’d already had below 30cc the day before and was on schedule to have another low day that day it was ready to come out anyway, so the nice doctor in Bennington cleaned up the black ooze and gauze pad, took out the surface stitch, put a steri-strip on the drain hole, and sent me on my way. But not before telling me how clean it all looked, what a nice job my doctor had done, and how well it is going to heal. Great things to hear just under a week after surgery.

As for my breathing and movement, they’re getting there. I have been out of the house this week, which was a huge step. I can sit up in chairs without backs and go up and down stairs without a problem. Getting into and out of a car is a bit tricky still, as is getting into and out of bed, but I don’t feel so confined anymore. Next week I’ll tackle longer walks and small hills. The main thing I have to remember is that I just had major surgery less than 2 weeks ago. I’m at that tricky point of feeling like I can do more than I actually should do. I’m slightly impatient and one of those people who doesn’t like to be sick or hurt so I’m constantly reminding myself to wait. Healing properly is the most important thing right now.

I still have not found out the results of pathology, and I don’t think I will until my follow-up appointment on September 2nd. So TBD on that one.

In the meantime, I can’t even express my gratitude to the people in my life. In addition to all the nice messages, so many packages have shown up to help me get through this that FedEx and UPS now know us. Flowers, cupcakes, fudge, books, high school in a box, and the insanely generous iPhone, thank you a million times everyone. You really know how to make a girl who just got a little unlucky feel loved.

I’d like to end this with a strange moment I experienced the other night. I was lying in bed on my back – something I’ve become accustomed to – when I realized that I didn’t feel the sheet putting pressure on Tristen. In the past few months I had gotten used to even the slightest contact with my tumor causing some discomfort, but that night the discomfort wasn’t there. For the first time since the surgery I felt what it was going to be like from now on. Tristen is gone. Sure he’s replaced by a partially numb indent, but I’m getting used to what that looks and feels like. In this one moment – a subconscious awareness I had for the contact between blanket and tumor that was awakened because of the absence of discomfort – the consequences of this procedure became real. No more pain. Forever. I can’t put into words what that means to me.

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.

Phase 3: The Tristen Phase

For some reason I always imagined there would be a Phase 3 of Travel Abrodge. Phase 1 was the RTW trip, Phase 2 was my Central America time, and Phase 3 was nothing more than an inkling that I would have one more thing to do before going back to stability. It usually took the form of Europe in my daydreams, sometimes a road trip, or the rare Antarctica idea. I never could have predicted what Phase 3 would actually be.

I came back to the United States because I had a bump in my side that was growing rapidly. Tristen the Tumor, as I called him. My male counterpart trying to break free out of my rib – a reverse Adam and Eve scenario. If Eve caused Adam this much pain, I feel for him.

I’ve had pain in my side for almost 10 years already. Back when it first showed up I was told it was an inflamed rib – costochondritis – and there was nothing I could do but ice it and take Advil when it acted up. Then on a random day in February 2016, a small bump appeared at the very spot that had been a constant literal pain in my side. That small bump was the size of a golf ball by May. Three different doctors in Guatemala told me three different things so I decided it was time to go home and get some answers.

Two doctors, one ultrasound, four jabs to get a biopsy sample, and three labs to analyze it finally gave me an answer. Tristen is a synovial sarcoma.

Synovial sarcoma is a rare malignant tumor. The chances of getting a sarcoma are small to begin with, but a synovial sarcoma is somewhere around 3 in a million. Don’t I feel special? It has been growing in a muscle in my side for 10 years, and just in the past 6 months it outgrew its home and declared its presence to the world.

Cancer is a scary word. It’s a term that is largely perceived as a dangerous, incurable disease. What it really is is an all-encompassing word that covers a vast range of illnesses. Yes I have cancer, if you want to put it that way, but it’s a very specific kind. As the most recent round of tests showed – a CT scan and an MRI followed my diagnosis, I’m getting really used to hospital visits – my cancer is localized in the sarcoma. This is the best news I have received since I started this process. This means that the surgery to remove Tristen is most likely curative. Yes there is a small chance I would need radiation/chemo to make sure it is gone for good, but the doctors are stressing that ‘small’ word. In all likelihood, when the surgery removes Tristen, the cancer should go with him.

I have surgery on Monday. 8 weeks after my first doctor’s visit but only 3 days after being told the surgery should fix the problem. It’s both a long time coming and so suddenly here I can’t wrap my mind around it yet. Maybe that’s better, less time to really think about being put under general anesthesia and having a near-tennis-ball-sized tumor cut out of me, along with part of the muscle it has lodged itself in and the skin on top of it, to be replaced by a piece of mesh that will hold the remaining parts of muscle together. Before I know it I’ll be on pain meds to help combat a whole new kind of pain – recovery. Then physical therapy. And hopefully the news that we got it all out. And then, the best part, no more pain in my side. I don’t even remember what that feels like after almost a decade of randomly feeling like I’m being stabbed in the rib. But I don’t want to get too far ahead of myself, first things first.

I have debated whether or not to post anything about this unforseen Phase 3, heretofore known as The Tristen Phase. It’s deeply personal and uses words that probably causes more alarm than I am actually feeling. I am surprisingly calm about all of this. I even managed to enjoy the MRI (FYI if you ever have to get an MRI practice meditation, it helped me stay calm and barely even notice the loud banging noise). So why am I posting this now? Two reasons.

One. It is the easiest forum I have to update everyone. I have been facing the best problem in the world: having too many people who care about me. I am truly lucky to have so many people want to know how I’m doing and wishing me well. But it honestly does get exhausting, getting reminders almost daily that something is wrong with me and having to constantly retell what is going on. This way I can write it here and everyone gets the update at once.

Two. This is part of my journey. It is not why I started this blog and it is not about travel, but it is about life. I made the decision to travel at a time when I didn’t have any medical hinderance, knowing that the future was unpredictable. The future did not let me down, I could not have predicted this. So if anyone is reading this not because you know me but because you happened upon my blog for the travel stories (and managed to read this far into this long-winded post), take this as a reminder to go now. You never know what will happen so make that dream your reality.

When I found out I had a sarcoma… Well first I cried a little, I mean come on it’s cancer it’s scary shit… But then I realized that it came at a time when I could handle it. If I had found this out when the pain started at 19 years old I would have freaked out. Who knows what would have happened with school, how that would have affected my career or ability to travel. Having it now at 29 (which, by the way, is the typical age these things show up) I have done everything I wanted to do in my 20’s and I am okay to stay here and deal with this. Of course it would be better to never have to deal with this, but apparently life was going too well for me and the universe decided I needed some balance.

So there it is. I don’t know how much I will write about what’s going on with Tristen and me. The idea is that I will use this as a forum to update everyone, so if you want to check in on me please look here first. I have surgery on Monday 8/15 and will be in the hospital for 2 nights. Recovery will be 4-6 weeks in Vermont. I can’t promise frequent or timely updates so please be patient.

And lastly, no, they won’t let me keep Tristen and put him in a bottle of mezcal. I know, I’m disappointed too.