Kathy Kuhl survived a rare cancer, ependymoma, a tumor of the brain or spinal cord.

DESCRIPTION

For Kathy Kuhl, what she thought was dizziness or vertigo, became a diagnosis of a rare cancer known as ependymoma.  It is a tumor of the brain or spinal cord.  In this episode of the @CancerInterviews podcast, Kathy tells host Bruce Morton she had to undergo surgery to get her spinal cord removed, which began a years process to regain something close to normalcy.  During that time, she suffered paraperisis, a form of paralysis that required additional hospitalization and rehab in which she had to learn how to walk.

All seemed to be well for Kathy Kuhl of Minneapolis, Minnesota.  In 2014, she began experiencing dizziness and vertigo.  Doctors checked it out but couldn’t find a problem.  Nonetheless, Kathy had problems, namely a severe burning sensation in her back between her shoulder blades.  The burning was so intense, in order to sleep she had to lie down on an ice pack.

Kathy went to see a neurologist, who ran an MRI.  Upon seeing its results, the neurologist told Kathy she had to get to a hospital right away, and another neurologist was waiting for her because the scan on a cancer tumor in her spinal cord.  Kathy knew things were getting worse because with greater frequency she was experiencing back pain, blurred vision, dizziness and neck stiffness.  She was told that was because the tumor was growing and impeding the flow of spinal fluid.  Kathy recalls feeling “blank and dark” with this news, but knew she had to be proactive.  In addition, prior to surgery, the care team had to make sure the procedure would not adversely affect nerves or motor skills.  But they went ahead with the surgery, and when she woke up, she was told the procedure went well.  Kathy was happy the surgery was over, but she couldn’t feel anything, and that’s when she was told she had paraperisis.  After being taught how to walk, she left the hospital, but had to come back for outpatient physical therapy for the next two years.  Kathy says until one loses the ability to walk, they don’t realize that walking involves several intricacies.  While she regained pretty close to a normal gait, she still goes in for physical therapy as she has weakness in her left leg. 

It wasn’t until two to three years after the surgery that Kathy Kuhl really felt like she was getting back to normal.  The day she went in for her MRI, she actually went for a run, but says going forward, she won’t be able to do that.  She loves to go on walks with her dog, but says sometimes even that can be a challenge.  Kathy is grateful that she lives in the Twin Cities because if she lived in say, rural Minnesota, her journey would have been much tougher. 

That’s when Kathy Kuhl and her husband founded a non-profit, WalkTalkConnect.  Its primary focus is to get survivors, their friends and families to go on a three-mile walk, connect with other patients and caregivers, to share their experiences.  It is also geared toward health care professionals, so they can learn more about what those with rare cancers go through.  WalkTalkConnect has a website, https://www.waltalkconnect.org, where people can find post-patient stories from survivors of ependymoma, astrocytoma, meningimoma, and other rare tumors, whose numbers go into the hundreds.  The site tries to address information and facts about different tumors.

Additional Resources:

Support Group: WalkTalkConnect  https://www.walktalkconnect.org

Book: “Reconnected: Stories from Survivors of Spinal Cord Tumors” by Dawn Standera

TRANSCRIPT

Bruce Morton: An ependymoma is a tumor of the brain or spinal cord.  Our guest survived an ependymoma, but it wasn’t easy.  This is a rare type of cancer, and because it is rare, it brings additional challenges.  We are going to hear about that and more from our guest, Kathy Kuhl of Minneapolis, Minnesota.  Here she is, and Kathy, welcome to the Cancer Interviews podcast.

Kathy Kuhl: Thank you, Bruce.  Thanks for having me on today.

BM: Before we get to your cancer journey, let’s start out the way we always do.  If you would, tell us about your life away from cancer; where you’re from, what you do for work and what you do for fun.

KK: I am from Minneapolis, Minnesota.  I have been here since 1998, and after stints in advertising, I opened my own business, sort of by happenstance, I started a candle business that is focused toward pet memorials.  That’s been going on since 2009, doing really well with that.  I am married, no children, just dog number three at the moment.  For fun, dog stuff. Photography, boating, anything outdoors. 

BM: Now, I want to talk about your cancer journey.  For all of us who are cancer survivors, many of us from a health standpoint, were getting along just fine, and then something went wrong.  When did you notice that something with your health wasn’t quite right?

KK: Years ago, I started having a little bit of dizziness and vertigo.  They couldn’t find anything.  They weren’t looking in the right place is what we found out.  Back in 2014, after experiencing increasingly more painful back pain between the shoulder blades, which turned into sort of a burning sensation, like someone had lit a match inside my back and I would go to bed at night on an ice pack because it was just so incredibly painful and uncomfortable.  I thought because of my candle business, I must have pulled a muscle or agitated something.  That’s when I went to a neurologist, and talked with her about the symptoms.  I could tell by the look on her face, she already knew what was going on.  So, we had an MRI immediately and upon finishing that MRI, I was told I needed to get down to the hospital right away because a neurosurgeon was waiting for me to talk to me because they found a cancer tumor in my spinal cord.  When I heard that, everything went blank and dark.  My husband and I thought one cannot get cancer inside their spinal cord, this must be a mistake, but when we saw the images in the surgeon’s office, clearly that was something that shouldn’t be there.  I had been experiencing more dizziness, blurry vision and neck stiffness and it was because the tumor had grown to the point that it was impeding the flow of the spinal fluid.  The surgeon said this needs to come out sooner rather than later because it was becoming a more dangerous situation.  I ended up having surgery about ten days later.  When you go in for surgery for something like this, they want to monitor you to make sure they are not getting into any of the nerves that are not going to impede your motor skills, sensory nerves, anything of that nature.  So, I was being monitored the whole time.  When I woke up from surgery, I was told everything went great.  At first, I couldn’t feel or lift anything.  They asked if I could lift my foot, can I feel this or that.  I couldn’t feel anything, but I was just so excited that the surgery was over.  What ended up happening was, I ended up with paraperisis , it is sort of a paralysis that happens, and ended up staying a month in the hospital, going into rehab and learning how to walk. After a month, I went to outpatient physical therapy for about another two years because until you lose the ability to walk, you appreciate the intricacies of everything that goes into walking.  So, it took a long time for me to get to a point where I had a more normal gait and I really had the strength to walk without a walker or a cane.  That’s kinda where I am at now.  I still go to physical therapy because I continue to have some weakness in my left leg that we’re working on.  Other than that, I am doing pretty good.  I did lose sensory from the diaphragm down on both sides.  So, if my dog lays her head in my lap, I can’t feel it.  Sometimes my pants might feel like I am wearing sandpaper.  So, the sensory nerves are a little out of whack, and if they are not back a year or two after surgery, they are not coming back to where they were originally.  You might see incremental improvement, but it is not going to be life as it was. 

BM: We’re confident you’ll be able to learn some tips and tools to help you through your cancer journey, but first we’d like to invite you to please give us a ‘like,’ leave a comment or review below and share this story with your friends.  Kindly click on the Subscribe button below and click on the Bell icon, so you’ll be notified when we next release an interview.  And if you or a loved one are facing a cancer diagnosis, please click on the link in the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.”

At what point, Kathy, did you feel like things were starting to turn for the better because we have heard about the treatment you have gone through, especially with your gait, your ability to walk.  At what point did you feel like things were starting to get better.

KK: I would say it was it was about two to three years in to my recovery.  I was a runner prior to the surgery.  In fact, the day I went for my MRI, I went for a long run with our dog.  It was just normal.  Coming out of all of this, that was off the table.  Even going for a walk with the dog was something that took a long time to be able to do.  When I was starting to have those opportunities, I started feeling like I am coming out of this, but it did take about two or three years before I was able to do just a walk.  I went for some walks, but it was until much later that the improvement started and I felt more confident.

BM: You were and are in the Twin Cities area which I suspect has plenty of topflite health care professionals; but what if you were in rural Minnesota and had the same diagnosis.  How much tougher would the journey have been for one with ependymoma to get the treatment and support they needed?

KK: It probably would have been much more difficult.  I was lucky in the fact that my neurologist has a very big personal relationship with a neurosurgeon that I got to see.  He is someone that is very much in demand.  Pediatric brain tumor is his primary focus, but he also does spinal cord tumors, which he did for me obviously.  I do know other patients who are in outlying areas in Minnesota go to the same facility where I am being treated.  It just takes them a little bit longer to sort out where to go.  I know a gentleman in southwest Minnesota and when he was diagnosed, he actually came up to the Twin Cities because he was having issues and was directed to the Given Brain Tumor Center.  Then there is another woman I know from Bemidji, and she went to MD Anderson in Texas, and MD Anderson is a renowned facility.  I think for both of them, it took a bit of time and research, but it is difficult because it is so rare.  When diagnosed, one doesn’t know if they are going to the right surgeon or if they are doing the right thing because some do a wait-and-see, some respond immediately.  I had no choice but to have it immediately.  So, there’s a lot to unpack once you are diagnosed, especially if you are living somewhere where you don’t an MD Anderson at your back door.  Fortunately, in Minnesota we do have the Mayo Clinic.  I think for those not in a good location it just takes a little bit longer.

BM: Kathy, there is the piece that involves treatment and the post-treatment piece.  This is, I am guessing, where being diagnosed with a rare cancer or a rare disease can be extremely difficult because whereas for those of us diagnosed with prostate cancer, or breast cancer, but where does one go when one is diagnosed with a rare cancer or disease to find support?

KK: For me, it was difficult for me to find that support. In fact, when I got to Abbott Northwest Hospital, for rehab, they handed me the book from the Christopher Reeve Foundation for paralysis, which shocked me.  I just wondered if I had missed a meeting on something because I thought I had gone there to learn to walk, and not this.  They said they don’t have anything for spinal cord tumors, and that they don’t get patients like me very often.  I thought to myself that is going to have to change. I joined this online forum that I found, and the minute I filled out the form and hit Send, this woman came back to me.  She said she, too, was in Minneapolis and had an ependymoma tumor, too.  She and I formed an immediate bond.  She was learning how to speak again because her tumor was higher up.  I was learning to walk again, and we were both in need to connect with someone and can understand what we were going through because it was just so hard to do.  In 2014-15, there wasn’t a lot of this going on, and so they only knew about this one forum that I joined.  Since then, there have sprung up a lot of Facebook groups that are helpful. Facebook is great, but one on one communication is important also.  That’s when we started a non-profit called Walk Talk Connect.  It is geared toward patients and their families to go for a three-mile walk and just connect with other patients, other families that are going through this, have been through this.  That’s the kind of care we need as patients and families, and it is important for caregivers because for them, it is all new.  Where do they turn?  It is also geared toward medical staff so they can come and hear stories from patients, and they can understand what patients need in the recovery process.  Then in 2021, Dawn Standera, she wrote a book about her own personal experience.  She asked me if I would put together a book about patient stories with people with spinal cord tumors.  That book got published and we had a book launch in 2022.  The book is available on www.walktalkconnect.org  and Amazon.  Proceeds from Amazon go to the Collaborative Ependymoma Research Network, which is hugely helpful for people going through ependymoma.  Proceeds from Walk Talk Connect go to Givens Brain Tumor Center.  Since 2016-16 we have really started to connect with people on a one-on-one, more personal level.  I have been in touch with a woman in Maine, another in New York.  Phone calls, we text, we e-mail, we have really been able to grow our network of people that we can connect with. 

BM: You had mentioned dealing with people in New York State, the state of Maine, so this tells us that Walk Talk Connect’s reach goes well beyond the Twin Cities.  So, if somebody wants to go to the website, what are some of the other ways www.walktalkconnect.org can be of help?

KK: We do post-patient stories on there dealing with brain tumors or spinal cord tumors and different tumors, ependymoma, astrocytoma, meningioma, there are hundreds of rare tumors and we try to address information and facts about different tumors.  People are always free to reach out to me through Walk Talk Connect.

BM: And this helps to fill the void, especially people who are in, as you say, outlying areas, who are not able to immediately access the health care professional they want, you might be able to put them in touch with someone or you can provide the support because we talked about the support for people with rare cancers is not as plentiful as it might be.  So, these are a number of ways in which Walk Talk Connect can be of assistance.  Now, Kathy, this book, could you mention its name?

KK: Yes, the book is “Reconnected: Stories from Survivors of Spinal Cord Tumors.”  It’s by Dawn Standera.  I worked with her on it.

BM: Okay, Kathy, we are going to wrap up now, and we always conclude with the same question.  If you encountered someone who had just been diagnosed with a brain tumor or spinal cord tumor, you might have a lot of things to say to them, but if there were one or two things that you would really want to make sure the other person remembered, what would they be?

KK: I learned I was stronger than I ever thought I was, going through this process.  I would also encourage them to come out and talk with me, I’ll have coffee with them.  I think that is the biggest thing we need is having someone to talk to, someone who listens and fully understands what we are going through, and someone who can hold your hand and walk you through the process.

BM: Once again, that web address is www.walktalkconnect.org.  Kathy, that’s gonna wrap things up.  We really appreciate your sharing your story because it is a story that needs to be told and there are people out there who need to hear it, and they need to hear about what Walk Talk Connect can do.  So, Kathy Kuhl, Minneapolis, Minnesota, thanks very much for being with us on Cancer Interviews.

KK: Thank you so much, Bruce.  Appreciate the opportunity.

BM: Thank you, Kathy, and as we always say, if you are on a cancer journey, you are not alone.  There are people like Kathy and organizations like Walk Talk Connect that are there to make that journey a bit easier.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group: Walk Talk Connect  www.walktalkconnect.org

Book: “Reconnected: Stories from Survivors of Spinal Cord Tumors” by Dawn Standera

SHOW NOTES

TITLE: Kathy Kuhl, Ependymoma Survivor – Minneapolis, Minnesota, USA

Kathy Kuhl survived a bout with ependymoma, a rare type of cancer tied to a tumor of the spinal cord.  However, once she was in post-treatment mode, she discovered sources of support were difficult to find.  That’s when she and her husband found Walk Talk Connect, a support group for those diagnosed with tumors of the brain and spinal cord.  This is her story.

Additional Resources:

Support Group: Walk Talk Connect  www.walktalkconnect.org

Book: “Reconnected: Stories from Survivors of Spinal Cord Tumors”

Time Stamps:

02:20 Kathy experienced a burning sensation between her shoulder blades.

03:11 Said a tumor was found in her spinal cord.

04:36 Underwent surgery to remove the tumor, and then had to re-learn how to walk.

05:58 Continues to need physical therapy.

08:03 Kathy said after surgery, she could no longer run, and it took years before she could go on a long walk.

10:30 Says battling a rare cancer can be difficult for those living in a rural area.

12:28 For those diagnosed with a rare cancer, there is a lack of support options.

14:00 She and her husband founded Walk Talk Connect.

KEYWORDS (tags):

cancer

ependymoma

cancer interviews

brain tumor

cancerinterviews.com

spinal cord tumor

bruce morton

brain cancer

kathy kuhl

rare cancers