tumor

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.

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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.

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.