helping me through my radiation journey

Hello! I'm Kiersten Pepping, and this is my story. (Sorry it's so long, but there's a lot to unpack.):

I've been sick for many years and have fought tirelessly to figure out why. In June of 2024, we found out half of the reason why. (The other half is still undiagnosed, but we are working on that.) I was diagnosed with a meningioma, which is a tumor that is formed from the outer casing of the brain.

Most meningiomas don't cause symptoms, but because of where mine was (in the falx), I have suffered from various speech issues, memory problems, muscle weakness, aggressive fatigue, visual disturbances, random mood changes, and light and sound sensitivity. If I do not escape lights and sounds when they become a problem, I will get extreme headaches and the occassional seizure. Almost none of these symptoms have gotten better since my surgery, but I'm hopeful that they will with time.

I got it taken out on December 5th. Luckily, the surgery went very well, and while the healing process has been very very slow, I'm told that I'm doing as good as could be expected. However, the biopsy came back as it being a grade 2, so while its still not cancerous, it's not benign either. This type of meningioma grows faster than grade 1 meningiomas, can infiltrate brain tissue, and has the potential to become a grade 3 (cancerous) if left untreated. Given the seemingly innocent writeup from the original MRI, and the fact that only 17% of all meningiomas are grade 2, we all thought that mine would be benign, and that my current journey with this would end for now if the tumor was removed entirely.

Unfortunately, even though it was 100% removed, because it is a grade 2, I have to endure 30-33 sessions of radiation therapy to help it not come back. Getting radiation therapy takes the likelihood of recurrence within the next 10 years down from 30% to 6%. 10-20 years would've been 60% without radiation, but would be 10-12% with it, and so on. Basically, due to my age, without radiation, I would almost surely have a recurrence in my lifetime, so I have decided to go through with the radiation. (See my cover photo for my super cool mask that I get to wear during my sessions. )

My airport job does not approve of light duty or short days, so I can't come back until I can be cleared for every job that we have since we are cross-trained. I spent the first 3 weeks of recovery being able to do basically nothing, so I'm having to start physical and occupational therapy at a very fragile level. As for my delivery driving (I work for DoorDash and Uber Eats), I just started being able to do that last week. However, driving on bumpy roads (which have been all of them lately with the snow) eventually causes headaches and full-body fatigue. Too, when my light sensitivity gets bad, which is often, I can't drive at night due to people's headlights. The hours that I can handle are few, and the real money gets made at night, so while I am pulling a little money right now, it's nowhere near enough to live off of, let alone pay off my extravagant medical bills.

Also, this is where I'm at BEFORE my radiation (which starts on January 13th). My oncologist says that side effects from radiation usually start about one week in. I have to do 6 weeks, plus I'll be doing 2 PT sessions and an OT session every week on top of that. I expect not to be able to do much work through all of that.

I was prepared to be gone from work for a month, 2 max, but I did not prepare myself for being out of work for 3-4 months. I'm a prideful person and hate asking for help, but as much as I hate to admit it, I can't do this by myself, so I'm doing what so many people have told me to do and have started a gofundme. If you happen to have anything to give, every dollar counts and is so greatly appreciated. To those of you who donate, please know that I am forever grateful for your help. Thank you all so much. ❤️

*****UPDATE 01/21/25 (Copied from my Facebook post):

Radiation:

I started radiation treatment last Monday, and it hasn't been as kind to me as we had hoped. I had an inflammatory response (head and eye pain, plus sinus irritation that lasted for the rest of the day) coming off of the table on my first day, which is evidently not normal at all. Side effects shouldn't even start for about a week, and pain shouldn't be experienced at all during a session. My oncologist legit told me that such pain should be impossible. (Story of my life. ) I have subsequently been prescribed steroids for the duration of my treatment. I also started experiencing the fatigue that they warned me about on Friday, and it's a lot heavier than they made it sound like it would be. (Making things sound like they'll be easier than they actually are seems to be a very common theme with this whole brain tumor experience. ) My scalp is constantly itchy, the skin is starting to hurt, and I've been getting the tingling that happens right before you start to lose hair for a while now, so I expect that to be starting soon. I also started experiencing "headaches" in my skull where the radiation passes through over the weekend. I don't even do therapy on the weekends. They told me that even if I'm not doing a session that the process is still active in my body, so having new side effects occurring on days when I'm not in session is normal. This is also why they say that I'll be experiencing side effects for about 2 weeks after I stop therapy. All of this makes me kind of nervous about the rest of my treatment, ngl. I'm only a little over 1 week into this with 5 more weeks to go. I'm officially intimidated.

Physical/Occupational Therapy:

The fatigue from my surgery has FINALLY started to dissipate. It was only probably a week ago when all it took was wiping off my car to make me weak for the rest of the day. With such fragility, I haven't been able to do much in regards to getting better physically. However, like the flip of a switch, it's been a few days since I've had that weakness. I made it one day with no fatigue (best day ever) before the radiation fatigue kicked in, but as much as the radiation fatigue sucks, I can actually push through it without feeling like I might hurt myself. My last PT session was the first one where I was able to go until my muscles burned. It felt amazing. I still have very far to go, but I'm just so happy to finally start feeling some progress. Seriously, it's about time.

Neurology:

I saw a neurologist who diagnosed me with a functional neurological disorder, which was caused by the tumor. This is the condition that causes my light and sound sensitivities. Luckily, this can apparently be fixed through a variety of therapies, which I am getting referrals for. I'm also being given anti-migraine meds to take in the meantime. I'm in enough therapies right now and have chosen to wait to deal with this until after I'm done with my current ones, but I'm very happy to hear that this can be fixed, as it has been the most debilitating symptom of my tumor.

Dermatology:

I went to a dermatologist to inquire about radiation hair loss prevention/treatment, as well as have them look at some moles that didn't look right. As far as the hair loss thing goes, they told me that they don't have anything that they can do for me now, but they want me to come back after the therapy to discuss recovery treatments. As for the moles, they biopsied 3 of them. One was normal, and 2 were atypical. One was mildly atypical, so we will be monitoring that area. The other was severely atypical, so they will be surgically removing a large chunk of skin around where it was on my calf. Since this requires staying away from things that could bump into it for 2 weeks, as well as keeping tension in the area low, I'm electing to do this now while I'm still in low level PT.

So yeah, there are definitely some good things that have been happening, but it hasn't been all sunshine and rainbows by any means. I'm just happy that I'm finally in a forward motion with becoming myself again. It seemed so stagnant for so long, so progress is refreshing, to say the least.*******