treatment
four months after the onset of my double vision caused by a meningioma pressing against my 6th cranial nerve, i'm finally getting treatment this week: five fractionated doses of gamma knife every day from Monday to Friday.
i'll update this post after my treatment each day to document the process and any symptoms or side effects i might feel throughout the week in real time.
monday, september 8 (session 1 of 5)
this morning, i had my first of five gamma knife treatments. after my ct sim on friday, i was ready for another spa day, but despite my best efforts to convince myself i was getting a facial, i couldn't quite get my mind fully there. the mask felt much stiffer today and really held my head in place, which gave me comfort in knowing my head was unlikely to move during treatment but otherwise not a ton of physical comfort being locked down onto the table.
after bringing me back to the same room i was in for my ct sim on friday, my radiation therapist informed me that my treatment would take 46 minutes each day this week. he helped me get comfortable on the table, gave me a wedge to elevate my legs and a blanket for warmth, and even placed a heating pad behind my neck for extra comfort. finally, after securing my mask to the table, he placed a piece of tape with a tracker on the tip of my nose so the machine sensor would instantly be able to detect any movement and pause the treatment.
the session started with another quick ct scan to ensure the machine and beams were aligned perfectly with my head anatomy. after my physician double checked the imaging, which only took a few minutes, the 46 minute gamma knife session began.
i was left alone in the room for the duration of the treatment, but my radiation therapist was able to communicate with me through a speaker, and i was given a call button to press in case i needed anything during the treatment. every five minutes or so, my radiation therapist would let me know how much time had passed or how much time was remaining so i was never kept in the dark for a long stretch of time. he would also pop in over the speaker to let me know how the treatment was going and whether i was staying still enough.
overall, the treatment wasn't bad. the session neither felt longer nor shorter to me than 46 minutes. i didn't feel any pain, other than a very mild headache on the back of my head that i think was caused by the relatively hard surface i was lying on because it dissipated as soon as i got up from the table. the mask was secured tightly to my face, so that i couldn't really open my eyes or mouth, and i had some nice lines left over on my face afterwards that took about half hour to disappear. i also had some blurry vision in my left eye after the treatment that also disappeared after about half hour that i believe was likely caused by the mask pressing too tightly on my eye.
so far, i haven't felt any fatigue, headaches, nausea, or any other symptoms. i was warned that side effects typically worsen throughout the week, so fingers crossed i continue to feel good over the next four days.
tuesday, september 9 (session 2 of 5)
today i had my second gamma knife session, followed by an appointment with my radiation oncologist (the only time i'll be meeting with her this week).
the session once again started with a quick ct scan to ensure accurate positioning and immediately moved into the 46 minute treatment. compared to yesterday, today's treatment felt like it was easier and faster, probably because i already knew what to expect. i was also able to find better positioning under the mask that allowed my face to rest into the mask so i was able to relax more and even came close to falling asleep a couple of times. i was shocked when my radiation therapist said "10 minutes have passed" today because it felt like we had just started minutes earlier.
after my treatment today, i was able to meet with my radiation oncologist to discuss any side effects i'm feeling and ask any questions. since i haven't really felt any side effects yet and asked most of my questions before even scheduling my treatment, the appointment was a short one. my ro offered to preemptively prescribe me a short round of steroids in case i experience any swelling or inflammation throughout the week, such as worsening double vision, and she said i can take advil/tylenol or any otc med for any headaches or nausea i might experience. while i have noticed some slight changes in my double vision over the last 24 hours, it's difficult to definitively attribute that to the radiation since my double vision has been so variable over the last four months.
if i'm able to get through this week without any symptoms, i could still face a flare up next week, but after that it's unlikely i'll experience new symptoms. since my meningioma hasn't shown any growth over the last 2.5 months and meningiomas are so slow growing in general, i won't need a follow up mri until six months post-treatment. in the meantime, it'll be more or less a waiting game to see if the treatment was successful in stabilizing my double vision or even helping it improve.
otherwise there's not much she suggested i do or not do this week or thereafter, other than maintaining a relatively anti-inflammatory lifestyle as i've been trying to do leading up to this week. luckily, i have my family here with me this week, and they've been cooking some tasty and healthy meals for me. i haven't been running or exercising since sunday (the day before treatment started), but i have been walking around 20,000 steps per day, which is hopefully helping keep the inflammation down.
keep sending those good vibes!
wednesday, september 10 (session 3 of 5)
today was a rough one. as soon as treatment began, i started to feel a bit nauseated. it wasn't bad at first, but then it really escalated and i ended up having to pause my treatment about 30 minutes in to go get sick in the bathroom before coming back to finish up the final 15 minutes.
walking into treatment this morning, i felt totally fine -- perhaps a tiny tinge of nausea caused by some anxiety on an empty stomach, but i never eat breakfast that early (9am) so it was all pretty normal for me. as soon as treatment began, i started to feel a bit warm even though i was in the same room i was in the previous two days under the same conditions. as treatment progressed, i felt warmer and warmer until i could feel my whole body sweating. this was accompanied by waves of nausea that worsened with every wave, until i was getting that feeling of saliva pooling in my mouth that happens before i'm about to vomit. finally, at about the 30 minute mark, when i seriously doubted if i would be able to hold it in any longer, i gave up and pressed my call button to pause treatment and call my radiation therapist in to release me from my mask. i explained that i felt like i was about to be sick, and he gave me a cold towel and barf bag and led me to the bathroom, where i proceeded to get sick. my body was shaking at that point, but after using the bathroom, drinking some water, and resting for about 10-15 minutes, i was ready to get back to it and finish up the final 15 minutes of treatment. fortunately, i was able to power through the rest of treatment with only some lingering nausea but no major issues.
after i finished my treatment, my radiation therapist sent me to meet with a nurse to sort out my nausea issue. my vitals, temperature, etc were all normal, so she gave me a zofran (anti-nausea medication) and sent me on my way. she also recommended arriving early for my treatment tomorrow so i could take a zofran preemptively before my treatment to hopefully prevent an episode like today's from happening again.
my nausea stayed mostly at bay the rest of the day, but i did feel some fatigue for the first time all week. i listened to my body and took it easy the rest of the day, still making sure to get a couple of walks in to help with inflammation but keeping my steps low at 10,000 and making sure not to exert myself physically.
according to chatgpt, day 3 (today) is usually the worst, so i'm hoping this holds true for me! 🤞
thursday, september 11 (session 4 of 5)
i'm feeling much better today compared to yesterday! i woke up without any fatigue, nausea, etc. and felt great during my treatment, other than a tiny bit of nausea towards the end. i'm not sure whether the zofran i took prior to treatment is to thank for that, or if what happened yesterday was just a fluke, but either way i'm just grateful and relieved that yesterday's incident was not repeated again today.
most of the fatigue is gone today as well. the most noticeable symptom i have is a mild headache, but i would rate it maybe a 3 out of 10. i've also had headaches and migraines most of my life, so it's the one thing i'm most used to and least worried about.
tomorrow morning is my final treatment, and i can't wait to be done! i'll likely go in early to take another zofran beforehand, even if i'm not feeling any nausea. i'd rather play it safe for my final treatment and go out on a high note than risk an incident like yesterday's again.
thanks for following along this week, and i hope to be back tomorrow with a positive final update!
friday, september 12 (session 5 of 5)
i am DONE with radiation!! going into today's treatment, all i could think about was how i was only one session away from never having to come back and get strapped into a tight fitting mask, so i was ready to do whatever it took to get through the next 46 minutes.
same as yesterday, i took a zofran before going into treatment, and today's 46 minutes went by faster than any other day this week. i didn't feel any symptoms during treatment and felt just as good afterwards. the adrenaline and excitement from being done probably played into how good i felt, but regardless i was just glad to be symptom-free.
before i left, i told my radiation therapist, billy, how thankful i was to have had him as my radiation therapist because he did such a great job and made the entire experience 10x more pleasant for me, and he told me he hopes to never see me there again (real). all the staff at ucsf were amazing - from my radiation oncologist to my nurse to my radiation therapist and even the reception staff - i had such a good experience working with everyone there and fully put my trust in their care. i'm so grateful to have had the opportunity to get my treatment here.
i decided to take my gamma knife mask home with me and can't wait to be the ghost of gamma knife past for halloween!
thank you all for following along this week and for all the support you've sent me in your various forms. i appreciate you all and will keep everyone updated here as i continue to heal and hopefully see full relief of my double vision in the following months.
peace & love!
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