Proton Radiation era

Cancer doesn’t know what’s coming next. Radiation treatment has begun! Boyahhhh!!!!!! 

Treatment is every weekday for 6 weeks (33 sessions). Today marks day 10 on my journey. That means I am 30.30% of the way through! My dad texts me every morning the next percentage, it seems shorter when you look at it that way! On May 22nd, I’ll be ringing that bell loud and proud. 

I’m rockin with proton therapy. This treatment is more targeted compared to traditional radiation which can reduce side effects on healthy tissues. It’s a great option for younger patients and adenoid cystic carcinoma, the specific type of cancer I’m facing.  

One of the amazing nurses totally blew my mind today! She showed me behind the gantry room. Three stories of concrete wall, she even moved it for me. Here I was, feeling all tough, and this humbled me. It moves like a garage and funny story, I actually was jump scared at the sound of it moving up the first time. I thought it might’ve been falling on me! And yet that was just one piece of the technology, there are other rooms with different functions compacted with concrete for this to work.

I did a little bit of research on my own and these are my findings. Traditional radiation therapy uses x rays which are like magnets that are so powerful they pass through your body. They can’t pass through things like bones, which is why they show up white! A film is behind you which captures the image. X rays are small amounts of radiation and research shows this amount is generally considered safe. The traditional method uses much higher doses of that radiation to kill cancer cells. This type of radiation therapy can be less precise. 

On the other hand, protons are tiny particles in an atom that are positively charged. A giant machine spins to rev the protons up to insanely fast speeds. It is transmitted to a machine called a gantry. Then, it is like a laser beam that hits the tumor. It’s basically shooting out high-energy particles right at the tumor to kill the cancer cells. They stop right at the target because it is precisely controlled leaving healthy cells alone for the most part. The technology isn’t brand new, but it’s still being improved. 

Estimates in 2021 show over 154,203 patients have benefited from it globally. As of 2023, there are (around) 31 operational centers worldwide but steadily increasing. A study also showed between 2012 and 2021, the total number of patients receiving it around the world nearly tripled- from 5,377 to 15,829. Interestingly, they found that (what they thought) would be the biggest target for prostate cancer, that it’s actually been used more for head/neck, breast, and gastrointestinal tumors. An estimated 279,455 patients treated worldwide by December 2021 compared to the millions receiving traditional radiation therapy. It is not as widely available as traditional radiation yet, and researchers are working on making it more affordable and accessible for everyone because of the high success rates they’ve seen. 

Mayo Clinic was the first place in the United States to offer proton beam therapy. They began treatment in 2015 at the Rochester location. In 2011, they received a $100 million donation from Richard Jacobson, an entrepreneur. This donation supported the progression of their therapy across their campuses. My radiation hall is called “Jacobson” in honor of his life- changing tribute for us.

My amazing radiation oncologist is leading a clinical trial in 3 weeks of this radiation instead of 6-7 weeks for head and neck cancers. They are tracking the effectiveness of the treatment in controlling cancer and the side effects. There has been positive feedback but it is too early to determine the effectiveness. The goal is to determine cancer control at 2 years after study registration. Interestingly, since some radiation oncologists are paid per treatment, this could reduce their salary. This raises questions about the influence of economic factors on the integration of new treatments.

These are some resources that helped me.

This video is about myths on radiation therapy for cancer treatment by Dr. Peterson, a radiation oncologist. 

This video is about radiation therapy at Mayo Clinic.

This is an informative video on the approach on radiation at Mayo Clinic. 

This video is about a young boy named David who battled cancer. The video talks about his experience with proton beam therapy to fight cancer.

April 8th marked the official start of my radiation adventure. It felt like a big step, a little scary even stepping into that treatment room for the first time. I teared up while walking back. It was just a wave of emotion washing over me. It was a very sentimental moment for myself as well, and for the pain my loved ones are enduring through their own battles. It wasn’t just about that; it was about the others battling this disease by my side. Seeing them in the waiting room was a moment of reflection. But when someone rings that bell, it is so cool. You know I’m standing up cheering. We are all warriors together in this fight.

I told one of my nurses I wanted my family to see it, without hesitation, she said she would take pictures for me. She went above and beyond getting all of those angles for me girllll. Thanks to her, I can share this experience with the people who matter most. Sorry about my ratty hair, I roll out of bed normally.

(picture taken by Mayo Clinic)

The mask and mouthpiece were a bit nerve-wracking at first. The nurses and doctors helped me through. They will give me warm blankets, music, conversation, touch, whatever helps me chill. Though those warm blankets make me sweat!! A gentle touch, and their words “we’re here with you every step of the way” meant the world to me. If I need anything at all, I just raise my hand. They can see and hear me at all times. They built my trust quickly, and knowing they’re there if I need them keeps me calm. It really built trust, a feeling of safety that let go of the anxious part of me. I was trying to be tough, but their unwavering support allowed me to truly surrender to healing.  

Here’s the breakdown: I take out my dentures (really just my retainer but I think it’s funny). They take daily X-rays to ensure precise positioning and make adjustments if needed. There’s one big beam for proton therapy and four different treatment rooms. Patients take turns getting zapped. My people update me, “we have the beam” or “second in line” on the microphone. I personally get treated in four different positions, each with a specific dose targeting the cancer, surrounding areas, and even a little nerve love. I do one position, then they move me to the next, chilling in between while others get their treatment. Let me tell ya, not the place to be if you have vertigo! They don’t move the table fast, but sometimes they gotta turn me a full 180 degrees. It can get a little… disorienting! The first time I got a CT scan during treatment, naive me thought I would go to a different room before they whirred it across the room. Full send on the spinning table! It was wild, I let out a little muffled “woohoo!” at the time.  

The whole session clocks in at around 20 minutes, super efficient. And weekly CT scans track my progress at the end of treatment. I always have these funny marks on my face after which cracks me up. And sometimes I accidentally put my face in a weird position while they’re putting the mask on and it gets stuck there! Like one time, my eye lash got stuck and it was curly. Also, caffeine is not good before treatment, made that mistake once, merely saying this for my future self.

Day 2 of radiation treatment I threw up all night. I slept on the bathroom floor! I had caught a stomach bug somehow. I did another treatment, I’m not wasting any time! 

During treatment, I smell farts! Let’s just say it is not roses! So radiation itself doesn’t have a smell, I learned it can irritate the lining of your nose and sinuses. This irritation triggers the release of certain chemicals that some people smell as metallic or burnt.

Makes sense, especially because I’m starting to see the side effects. We expect to start to see side effects around the 2-3 week mark, maybe gradually increasing. Right now, I have what looks like a sunburn, eye irritation, skin flakiness and some sinus drying. The side effects are manageable. Fatigue, dry mouth, mouth sores and some skin changes are the most common. Luckily, my doctor and nurse monitor these effects and my progress closely to help me manage them. My nutritionist is also ensuring I maintain a healthy weight. I’m working on keeping a healthy weight and eating as much of a balanced diet as I can while getting around 2,000 calories a day. I didn’t realize that if I lose weight, it affects how well the mask fits during treatment which can make the target inaccuarate. It was positioned as my face weeks ago, so I need to make sure I stay the same as I was then. I’m also trying to drink more water, aiming for over 60 oz a day! They call me “Camel Kam” for a reason I suppose. But I’m feeling the benefits already, I got that glow girl. Anyways, if it comes down to it and things get bad with the mouth sores, a milkshake won’t hurt, whatever gets those calories down.

My team sends out messages during treatment and they’re really interesting. On exercise, “We see faster recovery from radiation and less side effects from radiation when patients exercise consistently.” but one thing was intersting is resistance training is particularly encouraged: “We see the greatest benefits from resistance training.” The benefits extend beyond muscle as exercise releases “myokines… that signal the body to increase healing and health of many areas of the body—including those that are receiving radiation.”

They suggest taking an oral probiotic 3 times a day, but even once a day may be helpful. “This has been studied and shown to reduce mucositis (mouth burning) during radiation.” Their recommended brands are NOW OralBiotic Lozenges and BLIS K12 Throat Health Probiotics.

They specifically recommend checking Vitamin D levels and aiming for 40 or above. If your level is low, they suggest supplements (1000 IU daily for levels 20-40) or dietary sources like eggs, fish, and mushrooms. They advise avoiding other vitamins unless your doctor finds a deficiency. “The answer is complicated and science hasn’t given us a definite answer.” I did a vitamin D test to see if I need more. Though, no vitamin C, or immune system vitamins, because it might cause my body to fight back, and we want those cancer cells gone! That’s so interesting!

While some side effects linger, I’m grateful that they’re all temporary. This will definitely change some things, I mean after all, I’m radiating my damn body. 

Additionally, they have an amazing support system for people going through radiation treatment here. She became my personal cheerleader. We chat every day, and she’s even helping me find things to do to keep my spirits up. A social worker even made a personal list for me. Plus, she put together scholarship opportunities for me, how awesome is that. And get this, one of the staff members is my fishing guy now!  He’s even bringing me some equipment so I can keep enjoying the outdoors. I love this place.

Of course, there’s bound to be some chaos and unhinged energy along the way.  This whole experience is a wild ride but hey, that’s just how I roll! 

Emotionally, living by a hospital can definitely be a downer. The constant ambulances, helicopters, and medical equipment are a reality check, but they’re also a reminder of the amazing healthcare workers fighting alongside me every day. Missing out on family and friends stinks. Of course, I feel bummed about it at times, but that’s not my style. They will be there for me, cheering me on from the sidelines, waiting to celebrate when this is all over. This is my chance to embrace this journey I’m on, and I’m going to rock it! This phase might not be what I expected, but I’m gonna throw everything I’ve got at it and make it fun!  After all, you get out what you put in, right? Onward and upward! The weekends are fun chances to recharge and focus on getting healthy. I love hiking and adventuring.There is even real bingo around here, so I’ll keep you updated on our experience with that! I love to get coffee in the morning and go on fast scooter rides around the city. Sure, treatment’s an adjustment, and cancer isn’t exactly the college experience I pictured at 19. It’s completely valid to grieve the “normal” life you envisioned for yourself. But you know what, I’m f*ckin here, I’m fighting, and that’s  cool as hail.

Next session, watch out, I’m planning on taking over the aux cord.  I got to spice things up in this joint. And cancer, listen up, never underestimate the power of a positive attitude and a killer playlist. By the way, I added a new section to my page on music that pumps me up, excited about hyping ourselves up and if there is any songs I should add, let me know!

My doctor described it perfectly. It’s like a touchup on my road to recovery. Here’s to conquering treatment, one zap at a time.

Thank you for reading my story…

Kam