I am a Grade 3 Anaplastic Ependymoma Survivor: Survivorship Story

btg_bri

Hello. I learned about this group during my most recent clinic visit. I want to connect with others who have undergone or can relate to my treatment story.

In 2016 I turned 18 years old. Three weeks later I was diagnosed with a Grade 3 Anaplastic Ependymoma. I had attributed 6 months worth of daily headaches to being a senior in high school. Shortly following graduation, I learned the headaches were being caused by a brain tumor.

The treatment plan was surgery, chemotherapy, & (proton) radiation therapy. I am fortunate to say surgery was successful with resecting the tumor; the surgeon felt strongly he was able to remove all of the tumor. The removal of the tumor would reduce the odds of tumor regrowth to 30%. The additional chemotherapy and radiation would further reduce the likelihood for regrowth to 20%.

When I woke up I could not move the full right side of my body, nor could I feel anything on the right side. I had lost 50% of my vision. I could not read (part of this was aphasia, part of this was caused by the visual field cut).

I spent a month at a medical rehabilitation facility. Through intense therapies, I regained my ability to walk with the support of a crutch. I began chemotherapy following my discharge from the hospital. I am fortunate to have only undergone two rounds of chemotherapy. I was hospitalized several times during treatment as a result of low blood cell counts that resulted in fevers. I also broke out with a rash that covered my back and abdomen (the oncologist was not sure why the rash was occurring, but I have my suspicions it was the chemo...).

The most difficult part of chemotherapy treatment for me was losing my hair. Something as seemingly insufficient as hair loss had a huge impact on my mental health and perception of self. Up to that point, I had maintained a positive attitude regardless of the major life changes I was facing. The thing about hair loss is that it is visible. At first, I believed that perhaps not all of my hair would fall out. After 3 weeks of chemotherapy, I noticed I was losing a large amount of hair whenever I brushed or combed it. Within a week, it was to the point where there were patches where hair was missing throughout my head.  My mother's friend shaved my head later that week. I cried as it was being done. In reality, this was difficult for me because I was accepting the fact that what I had been going through and what I was going through was actually happening. I was sick, and people were going to know I was sick.  They could now see the 6" of stitches on my bald head.

I wore a knit hat for the next 8 months.

I underwent chemotherapy treatment for 2 months. Shortly afterwards, I began proton radiation therapy. Proton radiation is a type of concentrated therapy that does not go beyond the targeted area/tissue. This treatment was intense; I received treatment 5 days a week for 6 weeks. It involved an 1 & 1/2 to 2 & 1/2 hour drive to and from the treatment facility. I experience high rates of fatigue within the first week of starting treatment. A plastic mask molded to fit my entire head was placed over my head to keep me from moving my head. Radiation, though the sessions only averaged 20 minutes or so, was the most difficult part of treatment for me.

At this point in my treatment journey, it had been 5 months. My 3 month MRI scan showed there was residual radiation, but the tumor no longer existed. The treatment plan included a 3rd round of chemotherapy, one my family and I ultimately decided not to undergo. My treatment was part of a trial, and there was no subanal evidence to show it would increase or decrease the chances of regrowth.

I spent 1 year in outpatient speech therapy, 6 months with outpatient occupational therapy, and two years receiving outpatient physical therapy treatment. In 2017, one year following the beginning of my cancer treatments, I enrolled in classes at a community college. I had a delayed reading ability, but with accommodations I was managing classes and coursework well.

The first year following the surgery I had MRI's every 3 months. In 2018 the MRI's were moved to every 6 months, which remained the status until 2020. The highest rate of regrowth for Grade 3 Anaplastic Ependymomas occurs in the first 2 years. The next goal became hitting the 5 year mark.

During the time I underwent treatments in 2016, myself and my family were connected with a family undergoing nearly identical experiences medically. The patient was 18 at the time of their surgery, chemotherapy, and radiation treatments. Our mothers connected well, and it was nice to connect with someone undergoing similar circumstances. This person and I did not talk much following treatment; we kept tabs via social media.

I had finally reached a place during 2019 where I was no longer afraid of MRI results or random headaches I would get.

In 2021, I was a few months away from reaching the 5 year milestone. My mom called one day with devastating news; the individual I met during treatment had passed away. This news triggered all of my medical trauma, all of my fears. I never thought this person or I would die as a result of cancer. We were beating the odds, because for a long time, we were.

For months, I struggled with feelings of survivor's guilt. I stopped functioning for a month. I was constantly comparing myself and my achievements to this individual's. I still do.

It's 2022 and I am 24 years old.  I am a senior in college; I am studying to be a Social Worker. I want to work within hospitals and medical facilities helping patients and their families cope with medical trauma/life changes.

I am struggling to cope with feelings of not being good enough. There are so many lives lost to cancer. There are people who fought harder and longer than myself. There's often the thought in the back of my mind "Why did I survive when so many people do not?".

My medical trauma is deep, I am working to manage it with therapy. Some days are harder than others. I am grateful to be alive, I am grateful for the ability I do have, and I am grateful for my family and the unconditional support they offer. The next milestone is to reach "10 years cancer free".

My current challenge is trying to find the courage to visit the person's grave. I believe this is an important step in my healing journey.

I know this story is long, I appreciate it if you have read this far. I hope this might be helpful to someone maybe one day. Learning you have cancer is terrifying because there is so much in the future that remains unknown/uncertain. Cancer takes so much from those it affects. It's important to have a strong support system by your side throughout the process.

Best wishes,

btg_bri

aaron6547

Thanks for sharing your story. I realize this is some six months old, but i also just recently discovered this site. It's nice to read similar stories and hear about people doing well.

I also had a whole side paralyzed after surgery, but it was my left side. In December 2020, I went in for a biopsy of one of my lesions (because I was diagnosed with MS two years prior) and woke up unable to move anything on my left side. After a total resection a few days later and the confirmation of it being grade III anaplastic astrocytoma, I underwent rehab where I got my arm and hip working and am at least able to walk now (with the help of a brace and/or cane). I made so much progress in that initial month and not much since, I wonder if I continued the strenuous rehab for just a bit more perhaps I would be normal again now (at least in terms of being able to walk). I also have very reduced sensation on my left side, something the doctors just write off, as if i've got too much other stuff to worry about.

After getting out of rehab, I also underwent proton therapy followed by a year of chemo. I didn't have a bad reaction to it, but it did exhaust me. I also remember the plastic mask, and I remember freaking out that i had moved or something when they formed it because it never fit exactly right. I think in retrospect i had my mouth a little open or something and it probably wasn't that big a deal.

The chemo was the worst part for me. Regardless of how much zofran I took, the temodar made me so sick. Basically for the year I was on it, it was the week on the pills, followed by two weeks recovery from the pills, followed by one week where I could function, and then it all started again.

As I read all the literature about survival rates and how small my chances were of making it to five years, a guy I talked to gave me the best advice: Be the outlier. Back when I taught economics, I always used to tell the students that all these statistics were "on average", but there will always be outliers in the data that don't conform to the average results. My goal is to be the outlier in terms of living to where they have to throw my data point out because it's so different.

Anyway, that's my piece, hope it helps!