Radiation – Life As I Know It

Busy September capped by radiation ☢️

October 11, 2025

September was a busy month for me in managing cancer.

Back in June I had a brain MRI, which includes the very top of your spine (cervical). At that time, it looked like there might be an active tumor in part of my C1 vertebrae. I also had a full body PET scan that showed “stable” cancer at the time (mainly my spine has been problematic).

The stable PET scan means that my treatment (Enhertu) is largely working. However, the tumor on my C1 made me nervous. Your C1 is directly at the back of your head at the height of your nose. If anything goes wrong there it can be complicated and in the words of my oncologist “catastrophic” 😳

After discussing with my oncologist in August, we decided to radiate it. It’s not uncommon with metastatic breast cancer (MBC) to consider radiating smaller tumors if everything else is stable or no evidence of disease (NED).

So, I decided to pack this in to September which was already busy.

After another MRI of my cervical spine I met with a radiation oncologist. He wanted to do Stereotactic external Beam Radiation Therapy (SBRT) – a concentrated radiation that would have been 2 sessions.

My insurance company disagreed with my radiation oncologist and wouldn’t cover it.

I could appeal it but that can take weeks and I didn’t want to give the tumor more time to get comfy and grow. So instead, I had to go for 10 sessions over two weeks.

You have to lay perfectly still for radiation so that the beam hits the intended target. At my planning session appointment they created a mask. A mesh of warm plastic was placed over my face and head and molded to my exact shape. The photo of the mask shows me with a big smile – not that I’m super happy to be doing this, I just naturally smile for photos.

A spanking new mold of my face and head.

Then I got out of town. Drove Maddy to Cal Poly and then back home. The next day I jumped on a plane to Providence for work. Glen flew out at the end of the week and we spent the weekend (our first as official “empty nesters”) with my cousin playing tourist.

Beautiful fall weather made a boat tour of light houses on Naragassent Bay just delightful!

We got home late on a Sunday and Monday morning at 9am I had my first radiation treatment.

The photo shows me right after they finished a treatment. The mask mostly feels like a heavy blanket with a lot of holes draped over your head.

The mask is literally snapped to the table. You can’t move your head at all. You can kind of see through the holes and of course you can breathe. The round equipment above my head rotated all the way around the table that I’m lying on.

I had 10 treatments (M-F) over two weeks. Within those 2 weeks I also had my Enhertu infusion and got my flu and COVID boosters.

As soon as I finished radiation I headed back to the east coast, Washington DC this time to advocate on the Hill for funding for cancer research.

It’s been a lot, however, I refuse to let cancer dictate my life. Most of those days I was in bed before 9pm. I’m grateful that my side effects are minimal and I can still do “all the things”.

The side effects of radiation to your head are not pleasant. This week I developed a wicked sore throat to the point that I couldn’t swallow. Food doesn’t taste like anything. My fatigue has been ridiculous.

October is a little more quiet but more travel for work and fun.

I hope you all are living your best life and doing the things that make you happy and matter to you, whatever that might be.

Onward!

Our last family dinner before Maddy left for college.

❄️ February 2024 Update ❤️

Hi everyone. It’s mid-February, time slipped away from me. The main message to you all is hello, I’m still here 🙂 working to get back to 100% and staying positive.

Last month I had 10 days of radiation (20 rounds total). The lumbar spine and S1 showed cancer growth and the recommendation was to zap it. They zapped it all right. That radiation took me out of commission for quite some time. The radiation was from my L1 down to my S1 and from both my front to back and back to front. Anyway, it was a lot of radiation and I did not do well with it.

Nancy came out for a week when Glen was traveling and drove me back and forth. I’m super grateful for that. She also helped with so much stuff around the house I can’t begin to thank her properly.

Evelyn & Keiron came home to make potstickers and visit with Aunt Nancy

The second week of radiation was hard. I became nauseous and could not keep anything down for over 24 hours. I got some extra IV fluids and switched my diet which helped some. I’m still not a fan of eating right now. The further I get from the radiation the better I’m feeling.

I turned right around from the radiation to start IV chemo. I have a new medication now (previously I was taking Xeloda oral pills). This will be every 3 weeks and an infusion so I have to go in to the cancer center.

The new medication is called Enhertu (Trastuzumab deruxtecan). The type of medication I get is based on my cancer sub-type. It turns out that this medication was just approved for my sub-type in summer 2022. Read that again. Prior to summer 2022 this medication would not have been an option. This is why research for new treatments is so critically important. Since I have been diagnosed there are at least 3 new medications approved to treat metastatic breast cancer. Please continue to spread the word about the importance of research for MBC.

Dance competition season has begun and Glen was taking Maddy to Colorado Springs for the weekend for dance. We felt like it would not be a good idea to have me stay home alone after this infusion. Ann came out and took me to my first infusion and then stayed through the weekend. Fortunately, I did not have much in the way of side effects – just fatigue. So, Ann and I had a lovely visit. She also helped with finishing up some errands and doing some shopping. We are grateful for her taking the time to come (even if all we did was work and sleep!).

Ann came with me to my first IV chemo infusion

So, today I’m feeling “ok”. I don’t have to take any medication regularly. I do have a fentanyl patch for pain. I’m mainly trying to get my right hip back in shape. The good news there is that both my physical therapist and acupuncturist think the problem is a very tight hip flexor (not cancer). If that really is the case then hopefully I’ll be walking better soon.

I’m super appreciative of my neighbors who have driven me to appointments, ran to the pharmacy for prescription pick ups, brought food or coffee, and sent cards. It all means a lot to me and my family. We appreciate you.

Tomorrow I’ll be watching the big game 🏈 (hopefully feeling well enough to attend a watch party). Of course my beloved Packers are not in the running, the commercials should at least be entertaining.

Be well, be kind and get out there and move as best you can. Sending love to you all in this Valentine’s month and beyond.

Onward!

Graduation tears

This morning was my last radiation treatment. The purpose of the radiation is to knock down any cancer that might be lingering in my hip and pelvis. The radiation does not cure my cancer.

Overall the radiation experience has been pretty straightforward. I only had 10 sessions and I haven’t really noticed any side effects. Fortunately, the treatments are quick and I live pretty close to the cancer center so the impact to my daily routine was minimal.

Radiation is done one person at a time and so you don’t interact much with other patients. I did get to know my 2 technicians relatively well. Interestingly, both of them were here on assignment (one from Tennessee and one from the Caribbean). The cancer center does not have enough full time local employees and so they contract health care workers from other parts of the country. This is not a new phenomenon, it’s been happening a lot since COVID not just here but across the country.

Did the radiation help? It’s too early to know. There won’t be a clear, obvious signal. If my cancer become stable again then, yes, it probably helped.

So I’m “done” with radiation. When I arrived, the technicians greeted me with “happy graduation day.” When I finished, the nurse I met with to ‘discharge’ me handed me a certificate of sorts congratulating me on finishing radiation, signed by all the staff. It was a lovely gesture. After I met with her, I cried.

I shed tears not because of the kindness of the radiation staff or for finishing radiation. I cried because I know this is just one small blip on my road of trying to keep this disease under control. I’m not “done” with cancer. I haven’t really graduated to anything. I don’t feel like this venture into radiation is anything more than documenting and checking off a procedure.

I know it’s ok to cry about this. I feel sad knowing the reality of my situation. I let tears fall until I got to my car. I composed myself and drove home. I have things to do today and I’ll tuck this into the back of my mind and get back to living.

Hope you have plans to live big today too.

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See my day-to-day living with MBC on Instagram: @nottodaymbc
Sciency-cancer stuff on Twitter: @dcharlevo

Woah, we’re half way there

Quick check in now that I’ve got 5 of 10 radiation treatments completed (with a music nod for a title to my fellow Gen-Xers).

Fortunately, things are going smoothly. The radiation staff are great. I’m literally in and out. I leave the house at 8:30 am and am back home by 9:15. (Watch me jinx myself for tomorrow!)

I don’t have any notable side effects (at this point). I’m slathering up with lotion and staying hydrated.

They do the same procedure every time so it does go a tiny bit quicker than the first time. On Wednesday I had a check in with the radiation oncologist which went fine.

Also on last Wednesday I had my monthly medical oncology appointment. That didn’t go as well. It was “fine” overall. My neutrophils were low (1.02) and normally they’d let me restart my Ibrance medication with that value but because of the radiation they are holding those meds for a month.

I get 3 shots each month. 2 were in my right hip and it seems like one has hit a nerve so I’m have some really unpleasant side effects with that.

On Friday I learned my tumor markers have almost doubled as well. Why? Could be many reasons. Not really sure.

So, it’s been an eventful few days.

On a fabulous note, I read a book on Saturday (Big Little Lies, recommend!) and Sunday watched both football games. It was a very relaxing weekend.

I’ve not been able to get outside for a good solid walk since late October. The weather is helping me to be less sad about that. It’s very Midwest-like with overcast skies, cold and occasional snow.

Soon the weather will break and I’ll be up and about. Darkest before the dawn!

Be well my friends.

View of the mountains from the cancer center parking lot this morning. You can barely make out some of the foothills. I’m ready for some sunshine!

1 ☢️ down, 9 to go

After a short delay, radiation treatment is on.

I got a call late Monday (yesterday) saying my insurance approved the treatment plan, so in I went today for my first dose.

As my kids would say when they were younger “easy peasy lemon squeezy”. At least this one was. 15 minutes from when I walked in the door to when I left.

Two things stuck out to me.

The first is that it sounded exactly like when you get x-rays of your teeth at the dentist. Except, it lasted for like 20 or 30 seconds. Not gonna lie – that was a little unnerving.

The second was that they radiated the “front” of me and then the machine spun around the table and the radiated the “back”. This tripped me out a little because that radiation was traveling through the table into me. That hit differently. This is some powerful stuff.

Of course I knew this. At the same time, I go through most days with stage 4 cancer compartmentalized, ideally in the back of my mind. This made it come screaming front and center.

Tomorrow my appointment is at 8:45 am. They’ve already closed schools across the front range area due to a winter storm so there is a good chance I won’t make it. Not to worry, I have more appointments in the afternoon for regular oncology check ins and it sounds like they can squeeze me in for radiation in the afternoon. All the appointments are in the same building.

I’ll leave you with this wintery scene. We are expecting anywhere from 4-12” inches by tomorrow mid-morning.

Radiation and tattoos!

Well, I’m entering a new chapter of cancerland: radiation. I have avoided the radiation dance up to this point.

Alas, here we are.

One of the ways they monitor my metastatic breast cancer is through blood work and what they call “tumor markers”. If the tumor marker value is below a certain threshold, no active cancer. If it is above that threshold, “probably” active cancer. My tumor markers have been slowly rising above the threshold for a long time and then rose rapidly recently. My scans did not show any progression so the interpretation of the oncologist was that the cancer was stable.

Maybe not.

My hip/pelvis stabilization surgery last month showed significant “space” in my hip where basically the cancer had eaten away at the bone. That sort of thing does not show up well on imaging. So, the surgery was to shore up the bone, which it did.

The surgeon recommended a round of radiation to my hip to kill off any cancer cells that might be hanging out. For weeks now I’ve been preparing for the radiation therapy. This includes a consultation with a radiation oncologist, a preparatory appointment with a PET scan of the hip and then a simulation appointment where they line up everything in the radiation machine.

I’ve completed all of that.

I’ve learned that there is an entire team of medical professionals that work on my case. The radiation oncologist leads the team. Radiation therapists are experts in operating the machines. Radiation oncology nurses help patients manage side effects and also communicate with the family. The medical physicists work with the radiation oncologist and others to make sure each treatment is tailored properly for each patient. The dosimetrists work with the radiation oncologist and medical physicist to develop the precise treatment plan for each patient including calculating the correct dose of radiation.

No wonder it’s so expensive!

At my first preparation appointment I got a few tattoos! Not as exciting as it might seem.

I have 3 small black dots across my hips that will be used to align the radiation machine using lasers. It’s very common to get these small tattoos when getting radiation. The radiation technician joked that he has done more small black dot tattoos than any tattoo artist in Boulder!

The radiation machine looks like a very large Kitchen Aid mixer! The white draped surface to the right is where the patient lays, the table slides back toward the machine and the round element on the underside of the top is where the radiation comes out.

Now that everything is set up, I’ll have 10 doses of radiation over two weeks. I show up at the same time every day. It’s 15 minutes from when I walk in the building to when I leave. Fortunately the cancer center is only a 10 minute drive from my house.

The only hiccup is one that is not shocking. Insurance.

Cigna called to say that my radiation therapy is still not approved. The first request was for a procedure that did not conform to NCCN (National Comprehensive Cancer Network) guidelines. The radiation oncologist submitted a revised request. This one is still pending. It was pending as of 3:30 pm Friday afternoon. I can’t risk going to my 8:45 am appointment on Monday and not having it covered.

So, we wait.

Likely this will just be a short delay. It probably won’t have an overall impact on my situation. It is worrisome though because if I were in a more urgent situation, it would be frustrating and potentially harmful to delay.

In the meantime I’ll be spending the weekend doing some treadmill walking, playing with the cat, and reading some scientific papers on lobular breast cancer. Wishing you a weekend that is exactly how you want to spend your time.

Stay tuned for the next episode of Cancerland!

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Current medication: (2nd line of treatment) Fulvestrant, Ibrance, Zometa, Lupron