Last week was rough for me. I don’t know if I felt lonely because friends here were leaving, if I was getting overwhelmed just by being where I am, or if months of suppressed anxiety were finally catching up to me. Or it might’ve been one big sugar crash from all the sweets some of you lovely people have sent me.
Seriously though, by Friday I was miserable, the kind of sad that makes you forget what joy feels like. The kind of sad that make you want to kill a kitten.
Well, thank god for friends. And alcohol. Along with food and sleep, they are easily two of my favorite things. But seriously, a day of bar hopping, crab claw cracking and drunken singing with close friends was all it took to rescue me from becoming the angst-ridden, screamo-loving me of a decade ago.
I’m approaching the halfway point, and this weekend was a much-needed boost. In the upcoming weeks, I’ll get to go home for a long weekend, attend a friend’s wedding in Philly, and have a couple more visitors up here. I feel like I can see the light at the end of the tunnel, and that feeling alone is more important than anything else right now. Almost there!
Sixteen treatments down, nineteen to go!
I’ve had 15 treatments so far and I gotta say, this whole proton therapy thing isn’t growing on me. It’s uncomfortable. The complete surrender of control I’m giving to my radiation therapy team is unnerving. And, as far as I can tell, I haven’t developed any super powers…yet.
If you’re unfamiliar with proton therapy, don’t worry. It’s quite uncommon. There are only ten centers in the country, and Mass General’s is the oldest in the country. Back in the ’60s, scientists and doctors from Harvard and MCH decided to take a particle accelerator built for physics research and aim it at patients. For a long while, MGH had the only proton therapy center in the country, probably because most doctors were hesitant to aim devices normally used for bashing high-speed atoms together at their patients. Its benefits – the ability to deliver high doses of radiation while sparing healthy surrounding tissue – are becoming more and more evident, and more centers are popping up around the country, including seven since 2010. Fucking posers.
So how does it actually work? It all starts with hydrogen atoms, which are made of a happy little couple of one proton and one electron. Hydrogen gas is placed in a device called the cyclotron and, like alcoholism, the cyclotron splits the pair. The cyclotron is MASSIVE, like thousands and thousands of pounds massive. It has its own room. It uses magnetic fields to guide these lonely protons around a large loop, increasing their speed with each pass. When the appropriate speed for treatment is reached, the beam of protons is redirected to the patient’s room.
In the patient room (or gantry), the visible portion of the device is staggeringly big, but it’s only the tip of the iceberg. The rotating portion of the machine in the room is about one story tall, but surrounding that outside the room is a larger part that is about three times larger.
My radiation oncologist used my MRIs and CT scans to map out a “treatment plan.” They treat me from four different angles, usually two a day. Each angle has its own shape, which is carved into a brass cylinder. To control depth, they use a “compensator,” or fancy piece of plastic that keeps protons from going too deep and damaging my brain.
So what does it feel like? Well, nothing really. The mask is uncomfortable. They have Pandora hooked up to some pretty nice speakers, so I listen to a little Pinback radio everyday to mellow myself out. As I lie there, I can hear my team of techs mumbling to each other. Sometimes they laugh. The machine buzzes as they move my bed and spin my gantry, using X-rays to line everything up just right. Eventually one will walk over, slide the brass cylinder in and say something like, “Barrett RA-1A.” Someone else confirms. “We’ll be right back, Tom,” they announce before heading out. Then it’s quiet. After a few seconds, I’ll hear the machine doing something. It sounds like roller coaster brakes releasing. This happens a couple times. Then it beeps, like I’m in a microwave and I’m all done. They’ll walk in, and the whole process repeats one more time. Then, my favorite part, they take off my mask. I get up, lightheaded from lying there with too much blood trapped in my face. And that’s it. No pain. No nausea. Just the uneasy awareness that something very unnatural has just happened to my body.
Well, I’m three weeks in! I’ve got a couple friends here this weekend, so I’ll write again on Sunday hopefully.
Fifteen treatments down, twenty to go!
I’m almost three weeks deep in my stay here, but I’m still amazed by how open and warm people here at the Hope Lodge are. I’ve met people from vastly different parts of the country, including born and raised New Yorkers, lifelong suburbanites in the Midwest, and even small-town Texans. And, save for a few Hermitic Henry’s and Henrietta’s, people here chat it up like they’ve been friends for life. Seriously, it’s like the end of an after school special from the 70s. I guess friendships form easily when you share an adversary, and cancer seems as good as any to bring people together.
We’re all here in a very vulnerable state, and when we’re vulnerable I think it’s natural to crave the companionship of others. It’s good for us. Seeing other people in high spirits has snapped me out of potential funks, and I know that other people feel the same. We all support each other and want to see each other do well, because I think we all see a bit of ourselves in those around us.
It’s nice here, really nice. But no one wants to be here. I know I can’t wait to go back to NJ… well, I can’t wait to see all my family and friends. NJ, not as exciting. At least to me, the connections here feel very intense, but they are short-lived. People here come and go. Friendships are formed and then the dynamic changes. For me, as I pass more time here and change from newbie to Hope Lodge veteran, it’s getting harder and harder to put myself out there. I feel the urge to close up, count down my days here and move on with life. With a Netflix account and a steady stream of banana bread coming my way, it’d be easy to hole up in my room and let the hours pass me by. But the times when I fight these urges and spend time with people, I’m always happy I did so. I think it’s good for me personally, and I feel it contributes to what makes this place feel so warm.
Fourteen treatments down, twenty-one to go!
Being that I’m in Boston with not a lot going on, I’ve watched The Departed one or three times in the past couple weeks. What? It’s a wicked good movie. I’ve always loved the opening lines. Jack Nicholson says, “I don’t want to be a product of my environment. I want my environment to be a product of me.” I’ve always thought it was pretty badass.
Well, up here I have not felt like I’m influencing my environment. No, there’s been something dictating how I behave and feel far more than I’m comfortable with. It’s not that I’m a cancer patient. It’s not having to go through radiation therapy. It’s not even being in a new place. So what’s been this controlling factor? A cough. A relentless, violent, soul-sucking cough.
It started, coincidentally or not, the day I arrived in Boston. I assumed it was my delicate lungs reacting to the filthy Los Angeles/Boston air (I was in LA for a week before coming to Boston). By the end of week one, this stupid !%@#ing cough was waking me up several @#$!ing times a night. I haven’t been able to laugh out loud without feeling like my lungs were trying to jump out through my mouth for two weeks now. If I talk too excitedly with people, it’s a matter of moments before I’m spewing Tom germs all over the place. On the plus side, it’s a great ab workout. Read More…
Today was gonna be a big day. I woke up determined that I, Thomas F Barrett Jr, would successfully not nap.
Despite my high hopes, the day got off to a rough start. I was a couple minutes late to my 7:50AM treatment. As I climbed up on my little table like I’ve done 11 times before, something was different. I tilted my head a smidgen too far back, and I didn’t realize it until the mask was on. I couldn’t ask them to readjust it because, well, my mouth is basically clamped shut. I tried fidgeting, but my techs told me to hold still. Call me irrational, but I didn’t want to risk irradiating the wrong part of my head.
After my first uncomfortable treatment, I decided to explore downtown Boston a bit while I ran a couple errands. Unfortunately, the roads here feel like the original plans were laid out by a kitten playing with a ball of yarn. I didn’t mind getting a little turned around, but I wonder how long it took the guy who asked me for directions to regret that decision. Read More…
If I had to pick one thing at the Hope Lodge that has shocked me more than anything else, it’s the amount of laugher I hear every day. You’d think it’d be a somber place, you know, with all the cancer going on, but it’s really not. The kitchen is always filled with new friends and old, family members and even staff joking around together. There always seems to be some kind of activity going on, whether it’s a yoga sessions, movie night or a trip to the grocery store. Even the van rides in the morning are surprisingly cheerful, though I can’t say I contribute much to that. I don’t think I’m physically capable of smiling before 9 AM.
I used to be a big believer in talking things out to make them better. If there was something bothering you, the best and only way to make the problem go away was to talk, talk, talk it away. That was before I had real problems. Obviously, some things need to be discussed, problems like “Hmmm, suicide’s sounding pretty good these days” and “Son, I, your father, am actually your biological mother but became your father after a sketchy, yet affordable procedure performed in Bangkok.” But for problems like what I and my fellow patients here are dealing with now, words can only do so much. Dwelling isn’t a good idea. It would hardly be helpful to walk around thinking, “OhmygodIhavecancerOhmygodIhavecancerOhmygodIhavecancer.” Read More…
Just checking in real quick. It’s been a VERY busy weekend in a very good way. Friday, I met up with an old friend for an early sushi and beer lunch which was followed by a trip to a chocolate factory. Then I stayed up until 4:10AM waiting for my first overnight guest to arrive (no, that’s not a euphemism for a hooker). We got up Saturday, met up with other friends for some brunch/afternoon cocktails before touring the Sam Adams brewery, came back to the Hope Lodge and feasted on steak, veggies and Momma Barrett’s special potatoes, and then to cap it all off we scored free Red Sox tickets from my two new friends from Washington (the state). Today, I slept. And ate. Then slept some more. Then got an unexpected international phone call from an old friend. Then I slept more, followed up by some more eating. I just watched the new Breaking Bad episode and was not disappointed. I swear I’m not on vacation.
Welp, I have 7:50 AM treatments this week and am going to sleep once again. Before I head to bed, I’d like to share a video that I think is a pretty good explanation in itself of why I love both Germany and the internet so much. Enjoy.
Week three, here we go!