Back in July I had a tough decision to make: do I start treatment immediately or do I delay treatments and carry out my summer as planned? I knew my life would change drastically once treatments began, and even once treatments were complete it wouldn’t be an immediate shift back to the normal. I consulted with my radiologist in making this decision to get perspective from a medical standpoint and was told that it would be low risk to delay treatments until my summer trips were complete. I decided to delay treatment until mid-August. I spent a week at my cabin for our annual family reunion, and 2 weeks later went to Montana for a week for my cousin’s wedding.
Preparing for Radiation
I had one week between my two summer trips, so on the week of August 1st I completed my radiation planning session. After the planning session it takes the radiation team about a week to put together the final mapping and treatment plan, so doing this session between my 2 trips meant that my treatment team could get everything ready on their end while I went on my final summer trip. Radiation could then begin as soon as I got back. The planning session consisted of a MRI, some more blood work, and creating my radiation helmet. The radiation helmets are custom to each person since they need to fit perfectly to each person’s face and head in order to keep that person as still as possible during treatments. To create the mask they put a mold over my face and allowed it to harden. It didn’t smell the greatest, but aside from that it wasn’t a big deal. There was a hole for my eyes and nose so I was able to see and breathe. In the week leading up to radiation I had a lot of feelings. I didn’t know how much treatments would affect or change me and I was terrified about hair loss. I had no idea what I was in for and I don’t like the unknown.
Radiation Treatments
A full course of radiation treatments can be up to 6.5 weeks of daily treatments. My course of treatment ended up being just shy of 6 weeks. It’s a huge commitment which I knew going into it. My first radiation treatment was 8/15/22. Treatments were every day, Monday-Friday up through September 22nd. My parents put together a transportation schedule in which several family members and friends volunteered to help transport me. I asked for an early morning time slot – they try to give you the same time slot every single day. There were only a couple days that they had to shift me to a different time.
Each morning I would wake up around 6:30am and wait for my ride; we always tried to leave by 6:45am to head to Minneapolis and get to Abbott by 8am. We would pull right up to the Piper Building and received free valet service since I’m a radiation patient. The valet staff were very efficient – we would hand off the keys, provide a phone number, and off we went. Once I arrived to my radiation clinic I had to scan my treatment card which told the radiation therapists that I was checked in, and then I’d stop at the front desk to receive my wrist band.
Shortly after that I would be called back into the radiation area. I would head back, get up onto the radiation table, and make sure I laid down with my head positioned in the headrest. Then, they would cover me with a warm blanket, strap me onto the table, adjust my head position if needed and place the radiation helmet over my head and secure it to the table. They also gave me a ring to hang onto since the table was very narrow; it helped to make sure my arms didn’t want to fall off the sides of the table. They would then leave the room and head to the control room while I made sure to hold very still for the next several minutes.
They always had music playing and there were stars projected on the ceiling to look at during treatment. Once the machine started, first there were 2 arms that made one rotation around me – this was actually a CT scan. Not a diagnostic CT scan but just for positioning purposes since these radiation treatments have to be extremely precise. Then the radiation began – it would rotate around me once, then the table I was laying on would turn 45 degrees to the right, then it would rotate around me once more. The radiation machine was only on for about 2 minutes. The other few minutes were spent getting me into and out of position for treatment. It was very quick and efficient!
I’ve had a ton of questions about what radiation is like – did it hurt? Could I feel anything? How long is the treatment? I did not feel any sort of sensations during the treatments – they were completely painless. The machine was quite loud but outside of that I experienced no discomfort. I adored the radiation therapists I worked with. We built up a really fun rapport throughout the course of my treatment. I was typically in and out of the hospital in 15-20 minutes! See below for some pictures ☺
Life Outside of Treatments
I only worked through my first week of radiation and then I went on a medical leave so I could focus on myself and my treatments. I would typically get back home around 9:30 each morning and was left with the rest of the day to myself. A lot of people have asked me how bored I would get and the answer is not at all. I kept extremely busy! Read my last post Hailey’s Toolbox: Coping 101 to see some of the things that kept me going.
I spent a lot of time building my blogging website, brainstorming content, cooking, exercising, and doing macrame. Most of my weekday evenings are busy with family and friends but I usually had the daytime to myself. I was allowed to drive, so sometimes I would run some nearby errands, but for the most part I kept busy at home. I was finally able to do some of the projects that I had been avoiding and spend time getting my house rearranged.
Radiation Effects
Some of the side effects I was warned about were fatigue, headaches, nausea, and hair loss in the treatment area. Doing my own research I learned how my biggest weapon against radiation fatigue was drinking tons of water (about a gallon a day), eating healthy full meals, and staying active. I was told that I would likely be put on a steroid starting week 2 of treatment to combat brain swelling. The symptoms of brain swelling are headaches that are associated with nausea and they don’t go away with medicine. By week 2, I was not experiencing any of this so we did not start the steroid at that time. As the weeks went on, I still did not experience symptoms of brain swelling. I made it through the full course of radiation without having to go on the steroid! I was so happy about that because I was not looking forward to another medication, and especially the side effects that came with it.
At the end of week 3 the hair loss began, as expected. It was hard. I am especially attached to my hair and I had no idea how much I would lose. It was coming out in clumps like you wouldn’t even believe. My philosophy is to let myself have my moment, and then accept it and get over it. I allowed myself to feel bad for myself for 2 days, spending a lot of time in bed. And then I got over it and pushed on! I am now 2 weeks post radiation and am still having some hair fall out, but as I’ve been told, I still have more hair than most. The hair loss is only in the treatment area which is on the right side of my head, so I was able just part my hair farther to the left side of my head and cover the bald areas. I’m blessed to have a cousin who styles hair for a living. Thanks to her, I never once had to feel alone in terms of my hair loss. She had all the tricks ready to go!
I did experience some fatigue but nothing out of the ordinary – I was already used to the fatigue that came with having the brain tumor in the first place. I did nap most days but not all. On the weekends I was able to still go out and have fun as normal. Anytime people around me found out I was undergoing radiation to my brain, they couldn’t believe it. Overall, I’m proud to say that radiation barely touched me which I largely attribute to the positive attitude I maintained before, during, and after. Had I spent my days laying in bed feeling down, I would have been far more negatively impacted by radiation.
How I’m Doing Now
It’s been 2 weeks since my last radiation treatment and I’m feeling pretty good! My hair regrowth won’t start until 3 months after treatment, so late December. I am still often fatigued but it’s nothing I can’t manage. I’m still experiencing all the same symptoms that I was prior to radiation since the tumor is still there and isn’t going away anytime soon (check out Astro-what? for more info on that). At this point I’d say the most troubling symptoms I experience are tremors and fatigue.
This week I began my return to work. I am so blessed to have an employer that genuinely cares about my well being. They are having me work 100% remotely and working half days for the next 4 weeks focusing on projects. I am a manager at a mental health organization with a team of over 30 staff. I miss my staff dearly and am so excited to reconnect with them, but I’m also grateful to be able to ease back into things and start with projects.
Exciting Updates
I finally launched my Etsy shop, KissMyAstrocytoma. There are only a few designs to choose from at this time while I keep working on stocking up on some pieces, but I was so eager to launch my shop that I decided to just go for it ☺ Keep checking out my shop for newer designs to choose from including fun seasonal designs! Also, if you ever see any designs you like in the gallery on the Macrame page you can always reach out to me and request one.
I made a new journal entry on my Caring Bridge page for anyone who is interested in checking that out.
The Kiss My Astrocytoma t-shirts are ready for purchase! Check them out here. Please note that this is a 3 week fundraiser only, so if you are interested you’ll want to order now! T-shirts will be sent out after the fundraiser is over.
Finally, the links for all of these things can always be found on the Contact Information & Links page of my website.
Coming Up on Kiss My Astrocytoma
A Letter to my Mom
A Letter to my Pops
Making Tough Decisions
♡ Hailey
Questions? Comments? Suggestions?
