I'm joining forces with 3000 Miles to a Cure to raise desperately needed funds for brain cancer research. On October 3rd, 2022, I will join a small team of brain cancer warriors hiking 26 miles from the North Rim to the South Rim of the Grand Canyon. We will complete this crossing in one day to bring hope to those fighting brain cancer.
I thought that letting you know a bit about my surgery and recovery, it might tempt you to give what you can. Brain tumor research is very underfunded so if you can give what you can it would be greatly appreciated!
I was diagnosed with a brain tumor
in 2016. I was having sensory seizures where I was conscious, my right side of
my body felt numb, I would have repeating words in my head, for 20 seconds at a
time. I went to my family doctor, and she said that I either had Multiple Sclerosis
or a brain tumor. I went in for an MRI and it was discovered that I had a brain
tumor. I had two craniotomies, the first one was exploratory and the second one
was a full removal conducted by Dr. Lillehei. The funds raised by this hike
will go to brain tumor research that Dr. Lillehei looks at when planning for
surgeries.
This is what he did for me: I was awake for my surgery because the doctors were worried about my speech, since the tumor was inside my language center (Broca’s area) as well as next to my primary motor cortex where my major muscle movement would be impacted if they cut the wrong area of my brain. During my surgery, I was under anesthesia for the first part where they cut into my skull, but I was awake for next part to interact with the surgery team. A speech and language pathologist was there to show me notecards of objects that I would need to name. This aided Dr. Lillehei and his resident when removing my tumor so that if I stopped talking or made a mistake in naming the object, they knew that they were really close to the line between tumor and brain. They would then take me to the MRI to determine if they needed to stop the surgery or not due to how close they were to my language center. When we went back to the operating room, they conducted a bit more tumor removal and then they closed me up. I knew that they were closing my skull and screwing in the titanium plate. I was scared, but luckily, I couldn’t feel any pain from it! It’s kind of like when I’m getting a cavity filled at the dentist and there’s a shot to numb your nerve. You don’t experience the drilling of your tooth; but you do feel the of the pressure and force used by the dentist.
My craniotomies left me with
aphasia (loss of words), but no lasting motor issues. Having aphasia, I spent
plenty of time with speech and occupational therapists practicing ways to be
able to think of the words I want to say and have them come out of my mouth. I
had to spend a few years learning how to talk again. Now, most people don’t
notice that I had aphasia, but it will occur when I’m stressed, tired, or speak
in large groups - and I’m probably the only one who notices!
When I was mostly recovered from
surgery, I started radiation for 6 weeks and chemo for about 18 months. The
chemo was only supposed to last 12 months, but with my blood work and symptoms,
my oncologist, Dr. Ney, had to lower my dose which extended the chemo to 18
months. Radiation and chemo regiments are based off research for brain tumors.
The doctors would not know how much radiation to give, the type of chemotherapy
to provide, or what symptoms to look out for when prescribing it. The research
has informed them of what to do for their standard of care. It's always changing
based on new research. But with limited funding, they only know so much. I feel
very lucky with the treatment that I had received because of how well I am
doing right now.
When I was recovering, my mom,
Rachel, and my stepdad, Walt participated in Crossing the Canyon in 2017. I
hiked down into the canyon with my aunt, Rebecca, from the South Rim to meet
them and then we hiked out together. It was an amazing experience to see them
at the end of their journey and having the experience of finishing their hike with
them.
3000 Miles to a Cure had a
breakfast that for the hikers the following day and I met another hiker, Chris.
He had a brain tumor and brought me a neckless from the North Rim and presented
it to me. He had heard about me from previous discussions with my mom when they
were talking about why they were doing the hike. In his speech, that morning,
he had some very heartfelt words for me. Chris had a very active life and
unfortunately, he died from his brain tumor the next year. I still have his
neckless that reminds me of that time we got to spend together.
I have been a part of the Brain
Tumor Support Group at UCH since my surgery. It is a place where survivors go
to talk about the experiences they have had with surgery, radiation, chemo, and
healing. It is a good place to go when first starting down your cancer path and
when you and your support team have lots of questions. There are the few who
have lived with brain tumors for decades, but many people who attend the
sessions pass away. It is very sad getting to know these people and watching
them deteriorate or have multiple surgeries and many aftereffects and then
hearing that they have died while still staying positive for yourself.
One of the positive things that I
want to do is to hike the entire Grand Canyon with my family. My partner, Ben,
my brother, Nick, my mom and stepdad, and my aunt and uncle, Rebecca and Kurt
have all said that they will cross with me. We will have lots of mini
celebrations along the way!
Part of my motivations are that I
want to do this before my health starts to fade. I have had MRI scans every 6
months for a few years now with no tumor regrowth! I don’t know when the MRIs
are going to change to signify that my tumor is growing again - but it will
eventually. Also, people tend to talk about what they are going to do for
retirement. I’m not sure if I will get that far because a brain tumor is a
chronic disease. This is one thing that I can do right now, and not wait until
I’m retired. I am healthy (well, besides my brain tumor!), I am training for
this hike, I have a positive attitude, and I am motivated!
I need your support to reach my goal of raising $5,000 or more before we Cross the Canyon on October 3rd, 2022. Everything raised over the cost of participating in the event goes to brain cancer research. Thank you for joining me in this race to #beatbraincancer.
Kristi Engle Folchert
