Interview with Kristina Schnack Kotlus:
Kristina is a speaker, writer and mother and all-round wonder woman. 36-year-old Kristina was diagnosed in 2013 with a Posterior Fossa Ependymoma, which was a citrus-sized tumour wrapped around her 4th ventricle and wrapped around her brain stem. She was then re-diagnosed in 2017 with Leptomeningeal metastases.
Here is Kristina’s Story:
How did you find out about your brain tumour diagnosis?
I had actually been having symptoms for months.
My initial symptom, which sounds silly, was that I couldn’t lay on my stomach to read. That progressed into having terrible headaches and sitting up in the morning from laying in bed feeling like a brick was smashing into my face. The pain was really the worst part for me.
I finally went to the ER with terrible head pain, the doctor told me I was having migraines and to basically man up. I went another 5 months trying to do that before I passed out one morning from what we later found was hydrocephalus.
I found a neurologist who was very kind and compassionate and actually listened to me, and she ordered an MRI to rule out a blood clot since I have a family history of them. She called me the same day to tell me it wasn’t migraines.
I was then diagnosed with a Brain Tumor. I was booked in for a 16hr craniotomy.
What symptoms did you feel after the brain surgery?
Immediately after the surgery, I mostly felt pain and difficulty thinking/processing lots of noise.
I was very slow and timid, which is not my typical personality type. The left side of my body had pins and needles constantly, which hasn’t gone away, but I’ve learned to deal with it.
I will still also occasionally get headaches that are just tension in all the muscles that were cut during surgery.
Generally speaking, I got away with nothing to deal with that I can’t handle.
Was the Posterior Fossa Ependymoma fully removed?
We were told that the surgery was completely successful and the ependymoma was completely removed. This was particularly impressive because it was some kind of a mutant tumor and had grown tentacles that were wrapped around my brain stem and some of the blood vessels nearby.
I had a shunt during surgery, but since we did it so quickly and the hydrocephalus was cured by the removal of the tumor, it was removed before I left the ICU.
When were you Re-diagnosed?
In 2017 I was having numbness and discomfort in my legs, hips, and lower back. I had an MRI and diagnosed again with another ependymoma. This time it had Leptomeningeal metastases.
Surgery was not possible as the location of these tumors was in a very dangerous area and surgery to remove them may incur paralyzing me or causing loss of various functions, like bowel and bladder control.
My original neurosurgeon wouldn’t even attempt a biopsy to confirm the grade due to the location.
Did You Ask For A Second Opinion?
We were able to find another surgeon who was willing to get a biopsy, so I had a laminectomy to go in and grade the tumor.
This ended up being vital to my success in treatment as we were all working on the assumption that since it was so widespread it was Anaplastic (grade 3) and it ended up only being a grade 2.
We changed our treatment plan to do more radiation.
What was it like having Chemo and Radiation?
Brain radiation was not fantastic!
I stay pretty positive about most things, but by a few weeks in, I had to really do a lot of positive self-talk in my head to get myself to let them pin me down to the table by a face mask.
By the end, I was too tired to even drink through a straw, and my husband had to force-spoon-feed me liquids to keep me off an IV.
I thought I had been tired before, but the exhaustion and brain fog were really hard. It was okay the first few weeks, but once the exhaustion hit, it hit pretty hard.
The second time with the spine radiation, the process of getting fit for the giant body mold was a little weird, being naked in a whole room of medical professionals while they vacuumed me into a medical bean-bag was not my favorite- but the radiation itself felt like a cake walk compared to the end of brain radiation.
Funny story – I try really hard not to complain, but the last week or two of radiation I had unbearable heartburn (because if they’re blasting your spine, they’re blasting your esophagus).
I finally broke down and called my radiation oncology nurse just to make sure what I was allowed to take on the chemo, and when they heard I had called because I had an issue, the fellow, the nurse, and the doctor all called me back because they figured I must be dying.
A little Mylanta in my purse and I was good to go. The Temodar wasn’t that bad, compared to what I’ve seen friends with other types of cancer go through. I had really bad eczema because the inactive ingredient in every brand of temozolomide is lactose, which I’m allergic to.
Other than that, as weird as this sounds, the hardest part of the year of chemo was that Temodar doesn’t make me “look sick” so I kept my hair and looked mostly normal, aside from the eczema.
That meant that when I got tired, which was the worst part, feeling run down and not as energetic as I normally am, people would sometimes get frustrated with me because they forgot I was still in treatment.
How are you doing now after such a terrible time for you?
I can’t complain! Occasionally I take over the counter pain medication for headaches or back pain, but that’s about it.
Every day above ground is a good day, according to PitBull, so I try to focus on the positives! I feel like if I get to be here for what my husband calls “bonus time” I should be making the most of it by doing things I consider to be positive contributions to the world around me.
Not everyone survives a 16 hour brain surgery, let alone still gets to be functional, so I want to press on and help people.
What is the toughest challenge a survivor’s face?
I don’t know if there is one universal answer to this question, but I will talk about two that I know have been hard for me. I really struggle with survivor’s guilt.
Every year at the Race for Hope I have really had a hard time when they do the survivor’s lap, both because I feel like I got an easier diagnosis than a DPIG in a child or GBM in an adult, and also because I know many of the people in that lap won’t be there next year.
I’ve tried to assuage that by hosting fundraisers for brain tumor research, as well as by attending Head to the Hill and volunteering as a cancer mentor with Immerman Angels.
The second thing I really struggle with is that I look pretty normal now, but the left side of my body has pins and needles all the time, and I still get terrible headaches.
I think once you “look okay” people expect you to be fully back to normal, and while I have a new normal, I’m never going to be the person I was.
I am okay with that, I actually like this new me better, but it is hard when I can’t do something I want due to pain or knowing I will hurt my neck, and I feel like I’m letting people down.
Any advice for people or loved ones that get daunting diagnoses?
- For people facing their own brain tumor diagnosis, don’t be afraid to take the help, whether that’s a little Zoloft from your doctor, or someone who wants to come run a load of laundry.
- Also, sometimes it can be really exhausting to try to fight off bad feelings constantly, so I would sometimes shut myself in the bathroom, set my timer on my iphone for 10 minutes, and have all the bad thoughts in my head. I’d cry, and I would be miserable and when the timer went off, I would say to the thoughts, “Okay, you’ve been heard.
- I understand it’s possible, but I’m putting you away now, and I’m choosing to focus elsewhere.” And that would let me refocus my energy on good things, rather than having to spend all of my energy on fighting the dark thoughts in my head.
- I tell people I meet at cancer support groups all the time to be available to be the percentage. What I mean by that is the numbers for many tumors and cancers can be really bad, but someone has to be the survivor- even if it’s a 2% survival rate. Be available to be the 2%.
Suggestions for Loved Ones:
- There’s actually a chapter in my book called “My friend has cancer and I don’t want to suck, a general guide.” that gives great practical suggestions.
- I think the best advice is you don’t have to solve this.
- Don’t come at your loved one with google answers for their diagnosis
- Don’t try to bully them into a treatment you’d pick, just love them, and tell them you’re there if/when they need you. Some of my best support came from people who would text or leave messages and say, “I’m praying for you today, but don’t call me back unless you are bored. I know you have to be tired, I just wanted you to know I’m still here.”
- Also, I really advocate practicing joy- for our family a really easy way we did that was keeping a Blessing Book where we wrote down every good thing that happened, even on really bad days.
- Flipping through that book is still really helpful to me on bad days because I can see evidence of all the good things that have happened to us.
Where does your passion for writing come from?
I think my passion for writing comes from needing a place to put everything.
I found out that not everyone has an inner monologue. I can’t even comprehend how lovely that must be! I am constantly having ideas and thoughts and narrating my own life.
Right now I’m promoting my new book and doing a lot of speaking events,
What else do you do in your life?
I have three children who are 16, 14, and 12, and I homeschool them, so I spend most of my time with them. I also teach writing and science classes at a homeschool co-op I coordinate that serves other homeschool families.
I run a website for parents and families in my community, helping them feel more connected to other people and activities in our area, which is a lot of fun.
Here is the link www.pwcmoms.com
I also freelance for several local publications, and I speak to moms groups, church groups, and cancer survivors groups about choosing joy. I teach Sunday School and enjoy volunteering.
I’m also getting ready to send my first child to community college next year, where he’ll spend his final two years of high school, so I’ve reached a point in homeschool where I actually need to figure out what I want to be when I grow up and get a real job. I’m 36, so it’s probably time.
What motivates you?
I am a person of faith, and that really provides me with a lot of strength and motivation. I would say next to that, my children really keep me going. I want to show them you can face hard things and keep going.
What is your favourite Biblical verse?
I had Joshua 1:9 printed on a planner I ordered one night when I couldn’t sleep – The company asked me if I wanted to upgrade to 18 months instead of 12 and I got all excited that the internet thought I would definitely live that long!
It ended up being really heavy as an 18 month planner and hurting my neck, but I loved it!
“Be Strong and Courageous for the Lord Your God is With You” – Joshua 1:9
The first thing you see when you walk into my home is:
“He has told you, human, what is good: and what does the Lord require of you but to do justice, love mercy, and walk humbly with your God?” – Micah 6:8
It’s a good reminder on days I can’t do much that as long as I walk with God while I do it, it’s enough. It’s also a good reminder on days I do too much that I need to stay humble.
Who is your personal hero or are your heroes?
This is a really tough question!!
I find people inspirational and motivational all the time, but in terms of a hero, I don’t think that’s really something that I have in my life.
I am in awe all the time of the people around me- everyone has a story, and when you listen to them and realize that fact, everyone around you has the capacity to be a hero, it just depends on where they bend their storyline.
What would you say is the most interesting thing you’ve ever done?
I joke that my life is a lot like the movie “Yes Man” with Jim Carrey, not because I went and joined a new age cult, but because I generally say that things sound interesting and I’ll give it a shot.
My Prince William County Moms website has given me many opportunities to try different things- I met the Ringling Brothers elephants before they retired, I’ve sat next to the ice at Disney on Ice.
I’ve been to movie premiers, I got to fly down to the Chick Fil A Home Office and tour the premises and meet the founder before he died, I have been to museums before they open to the public- nothing totally earth shattering, but a lot of individual yesses that have kept my life as a whole pretty interesting.
Tell us something about yourself that people probably didn’t know… anything?
When I was first diagnosed, a radiation oncologist told me that in medical school they’re taught, “when you hear neigh, think horse not zebra,” and that I was a zebra. I posted that on Facebook and a friend told me to call that doctor back and tell him I was a “magical effing unicorn.”
Because of that post, I now own a collection of unicorn stuff that would make any 10-year-old girl jealous.
It’s actually kind of embarrassing how much unicorn stuff I own, and people just keep sending it! I even have unicorn salt and pepper shakers.
Kristina Schnack Kotlus you are an inspiration. Thank you for talking about your posterior fossa ependymoma experience. You show that even when you go through such a frightening and exhausting experience that you can use faith and family to pull you through.
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