Oct. 10, 2023
23-Iron Sharpens Iron: Glioblastoma Warrior Hedy
This episode is dedicated to Hedy Vincent June 21, 1976-December 15, 2023. She will forever remain my hero in faith, strength, perseverance, kindness, humor, humility and love.
All warriors are recognized on 1 in 3. This is an episode shared from the podcast "Another Situation."
While glioblastoma typically affects Caucasian males with a median age of 64, it can be found in others. Listen as Hedy shares the details of her diagnosis with GBM. With the support of so many around her, maintained her faith, determination, strength, and sense of humor. We love you Hedy!
#hedstrong
If you are in the United States and need help right now, call the national domestic violence hotline at 800-799-7233 or text the word “start” to 88788.
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Thank you for listening!
Cover art by Laura Swift Dahlke
Music by Tim Crowe
00:00 - Hedi's Glioblastoma Battle
09:33 - Medical Mystery
23:32 - Living With Glioblastoma and Finding Support
32:53 - Strength and Resilience in Facing Adversity
41:28 - Glioblastoma Impact & Power of Support
50:21 - Stay Grateful
WEBVTT
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Hi Warriors, welcome to 1-in-3.
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I'm your host, ingrid.
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Please bear with me as I try to get through the rest of Shelley no Tech's story.
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This is a really heavy one.
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While I continue to finish working on the last few episodes, I want to leave a different kind of episode with you.
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This is an episode from my other podcast I have with my sister, jessica.
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The podcast is called Another Situation.
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In the summer of 2022, we had the privilege of interviewing one of our childhood friends and Jessica's hero, hedi.
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She was diagnosed with glioblastoma and agreed to share her story.
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Hedi has fought long and hard over the last almost two years and she's come to the decision to proceed with hospice.
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While this is not a domestic violence story, this is a story of a strong survivor.
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Here is Hedi's story.
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Hey guys, I don't want to take too long on this introduction because I want to get right into Hedi's story, but here are a few statistics for you.
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Glioblastoma is a very aggressive and fatal form of brain cancer.
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It's most commonly found in Caucasian males with a median age of 64 years.
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The survival rate is only approximately 5% at 5 years.
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Yeah, I know we don't have a lot of time, so I don't know.
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If you want to, just yeah, let's get to it.
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Okay, do you want to maybe just do a little background about yourself?
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Sure, first, okay, sure.
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So I guess, well, I've known you guys since grade school, so back in the 90s, right, yeah.
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But after high school well, actually, during high school, I joined the military my junior year of high school, so I joined the Wisconsin National Guard when I was 17.
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So it's been, you know, 29 years in the Guard.
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Now, well, july will be 29 years for me.
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But you know, on and off active duty, you know deployments here and there.
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My last assignment, my last assignment, when I was diagnosed was as the university at, was the APMS or assistant professor of military science at the University of Wisconsin, eau Claire.
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So I had done my first 18 years as a non-commissioned officer.
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So I made my way up to E7 or Sergeant First Class, and then I switched to become an officer in 2011.
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I did graduate from Martin Luther College, though.
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So I did teach at Luther Prep in Watertown for a couple of years and before I got deployed, and then I ended up having like back-to-back deployments and I ended up just staying on active duty, and so that kind of my career and the course of my life just kind of went with the military then.
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So I spent a lot of my time away from home and you know, having to balance that, you know, because my husband's also military and he's retired military and he retired in 2018, april of 2018.
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So I think, in that manner, it's kind of been a blessing because he's able to be around all the time, I guess.
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So, military, a teacher, a coach.
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As far as, like fitness enthusiasts, my entire life I've competed in bodybuilding CrossFit, that one's more recent, but you know, I did a half ironman, I wow.
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So endurance sports and, oh goodness.
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But you know, through college I played sports too.
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So I had never played soccer before and I ended up loving soccer.
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So I ended up playing all four years of soccer and college and then softball as well.
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This year.
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Recently, I started roughing basketball too, so I was able to ruff my son's basketball games and I coached his team for a little bit too, at St Paul and Tomah for a little bit.
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No kidding, yeah, yeah.
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So we had, I've had a lot of time that I've had to kind of force to get in there to make sure I spend time with my family, but I want to say that's always kind of I hate to say that because I think back on it and I think, man, I really let and I don't know if you can say, when you do sign that dotted line and you, you know, take that oath and you know, for your country.
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I think a lot of times you end up like they take it takes precedence over everything else, because you don't really have a choice.
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It's almost like I signed the, I swore that I would do this, and so it's not like it can be like, well, sorry, I don't want to, I don't want to do this anymore, I don't want to go, or whatever you know.
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So I think that was.
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It's not certainly not a regret, but it's something that I think, with with being diagnosed with GBM, it just kind of made everything come to a head as far as realizing and recognizing what's really important.
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What's really important Did you want me to talk about, like leading up to?
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Yes, quick question how old is your son now?
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He's 14.
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14.
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Okay, yeah, in fact he is.
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He wants to go to prep, so he's going to go to Luther next year.
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So, yeah, that's awesome.
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And then, did you meet your husband in the military?
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I did, yeah, we both were recruiting.
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So we like, when I came back from deployment, that's where I spent most of my.
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Most of my career was was with recruiting and retention command and and then I switched to becoming officer and I I took command of the 108 forward support company in Sussex, after being a lieutenant at the 108th, and then I was also in the 157th maneuver enhancement brigade, but part of the field artillery unit, and I ran a company I had a company of of about 125 soldiers and but we were part of the field artillery so we supplied logistical support for a field artillery battalion and and then I was a training officer for a little while.
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And then I don't want to say ironically, because, well, maybe it is, I guess a little bit, but I ran the Army resilience schoolhouse in Fort McCoy for for a few years.
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So we have, you know, taught how to overcome like obstacles in your life, build relationships how you, because we've had the military in particular, we have a lot of people with PTSD, a lot of people that were deployed.
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You come back from deployment and you're trying to figure out how to fit back into civilian life, and so I look back on all of these things in my life and I think you know God really like kind of laid the groundwork and prepared me for what I'm going to right now in particular.
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My husband's still active duty and I was in the Navy for a little bit, but like I what?
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And now I work for the VA as a social worker and actually one of the things that we see is a lot of people that have the hardest times are like the reservists in the National Guard, because they come back and your unit's not together anymore.
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So like when you're active duty, you all stay together and so it's super hard.
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So exactly what you're talking about it's just so much harder for you guys.
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Yeah, and people trying to go back to school too.
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It's.
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It's often difficult because when you've seen the things you've seen overseas and in third world countries and then coming back to you know, the richest country in the world and you see, you know that people take so much for granted, it's tough to integrate back into the college life and be around.
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I think people that you almost, you almost have to kind of bite your tongue and just be, you know, be accepting and be tolerant of other people that that have you know that maybe don't necessarily, maybe aren't necessarily thankful or recognize what they have, because they've never seen anything else or they've never been forced to be in any kind of Pressure or or high stress situation, absolutely.
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Yeah, okay, yeah, if you want to go ahead and look up into the start.
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Yeah, sorry for that kind of sidetrack, but well, that's okay.
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So Everything started, honestly, I started at ROTC as the assistant professor of military science and in July of 2019 and I want to say maybe a month after that because I remember when the first incident happened, I was in the weight room and I remember I was warming up with a bench press and I just remember having a.
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You know it was lightweight for me and it should have been lightweight for me, but what happened is, as I pushed up, my left side just completely gave out and I ended up kind of having to roll, roll the weight off off me, and I Remember thinking what's going on with my left side?
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So I lowered the weight, I lightened the load and and the still same thing, like this side, just was giving out on me.
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So I and you know what I'm just gonna go get checked out.
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And then I proceeded to go through physical therapy for a good year and a half because you know insurance makes you do all physical therapy Before they decide, hey, let's do an MRI or let's, let's see if there's something else going on.
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So they they you know they kept saying you're a medical mystery, because this my left side, especially towards the back of my arm, my tricep, back of my rear delts, back on my shoulders.
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They were, or it was at completely atrophy and compared to my right side.
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And they did the MRI.
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But they only did it from the neck down and they saw oh well, you know, I'm in my 45.
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At that time I was early 40s and they said you have, you know, spinal degeneration it looks like, which is pretty common, for you know, being in your 40s, so that wasn't unusual.
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But what they saw was like maybe a pinched nerve and that's what they were thinking that was causing all of the discomfort and the lack of strength on that side.
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So they were like let's do an up a girl, do a trigger shot and see if that fixes it.
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And before I was able to do that, I I Woke up one morning and I ended up like almost, it was almost.
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I got up and I was like whoa, what's going?
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The whole room started spinning and I just like fell backwards into back into bed and I started.
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I was really nauseous.
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So I and we have PT at six o'clock in the morning and I've never missed a PT session or physical training session with the cadets, you know.
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And I ended up saying hey, honey, and talking to my husband, I like, can you take me to the emergency room?
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Something's not right and I'm not I'm usually not one to even that's not my go-to let's go to the emergency room.
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I just felt something was, something was off and they did a bunch of like just visual tests and they were like I can't remember the name of this maneuver, but they're like turning your head in different directions really quickly and they're lying down, but they thought that I had vertigo and so I started seeing a physical therapist for vertigo, and this was in April of 20 2021.
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I started seeing the March of 2021 when I started seeing a physical therapist for vertigo and I ended up getting a trigger shot in the epidural and Neither one of them seemed to work very well.
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And I had gone to Michigan to my nephew, my niece's confirmation, and so it's like a six hour drive.
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There's six hour drive Back and on the way home I was Experiencing numbness in my my left hand was lasting maybe 36 seconds, and I knew to time it.
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You know, to time, if you know, you start feeling these.
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You know weird things.
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Because I was thinking of you know, I'm wondering if I'm having a stroke.
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I kept thinking that and then it lasted, like you know, 30 seconds or so, and Then, on the way home, like the whole left side of my body felt like ice and and I thought, and I was driving, so I ended up pulling over and walking around and then the feeling started coming back onto that side.
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So I had called my husband and I said this is really weird.
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He's like well, are you sure you're okay to drive?
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And I said yeah, we'll make it home, which I did.
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I made it home, but I just thought I'm gonna let my physical therapist know that, that I was having this numbness.
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So the physical therapist the next day said that's not normal.
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She said I'm gonna let your primary care doctor know.
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And I want to say, maybe 10 minutes after I left the physical therapist office, my doctor called and she said that's not, something isn't right.
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She said you need to get.
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She's like if you have another bout of that numbness, she said go directly to the emergency room.
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And she said let's make an appointment for the next day, which would have been Wednesday.
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Wednesday was the next day and so I was gonna meet her in the morning.
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Well, that night, that Tuesday night, I went Into I have a gym, a home gym, and I was working out in my home gym and it was kind of a.
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It was a heavier workout of like a pile of and it was kind of a.
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It was a heavier workout of like a pulling and pushing movements and I just remember feeling so much pressure in my head and I dropped my phone and I was trying to pick it up and my hand just kept like flopping, like it was just going to.
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I couldn't move it, I, it was just dead.
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And I said out loud, I said what's wrong with my hand?
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And I could hear, I could hear my voice Flurring and I could feel like drool coming out this side of my Face or out of my mouth and I was like what is going on?
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And so I ran.
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I thought I was having a stroke for sure.
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So I came inside and I yelled for my husband.
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I said I got to go to the ER.
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I said I think I'm having a stroke and so, yeah, and so he, he drove and called the, the emergency room and let them know I was coming.
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So they were ready for me when I got in and they took me into.
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They took me in to get a CAT scan and then they were, you know, doing all these vision, vision tests again.
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And I still I can still see the lady, that, or the, the female doctor that was kind of pacing back and forth outside of my, outside of my room, and she was doing this.
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She was like shaking her hands and I said it's not a good sign.
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You know that wasn't good.
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So she came in and she, you know, put the the image of my brain On the screen and she said we found them.
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She's like it.
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She's like it took me eight minutes to get the courage to come in here and she's like it's.
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I never like to deliver this kind of news, but she said you have what appears to be a black mass on the right temporal lobe.
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She's like I Don't know what it is.
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She said, but you're likely going to be here in the hospital for a really long time and I thought you mean like starting now.
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I have to stay here.
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She was well.
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No, she said, but you know, in and out.
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She's like, because we don't know exactly what it is, she said.
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But she said I think it's a tumor and it was.
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It was a pretty good size, like.
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The image always looks larger than I think what it actually is, because they said it was like three centimeters, which is not doesn't sound very big to me.
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But what I could see around the tumor was a large black blackness around the tumor which was swelling because the tumor was starting to grow to such a point where it was pushing my brain and certain parts of my brain, that was affecting this entire side of my body, and it was it was getting very dangerous.
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And they were like we need certain, you need surgery immediately.
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And then we need to test, we need to take fluid from the, from the tumor, to find out what kind of a tumor it is, and they needed to find out if I had any other tumors in my body.
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And so even at that moment, I thought I am naturally a positive person.
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So I was just, I don't, it's got to be benign.
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I'm like 40 years old, I'm in good health, there's.
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You know, I eat well, I watch what I eat and I thought there's no way that this is gonna be anything serious.
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So but at the same time, you know, I was, you know, I don't think I slept at all that night I just kept running through different scenarios and and Even at that, at that time, I had a really hard time focusing and just like coming back to, you know, my faith and my foundation, like what should I be doing right now?
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I was so wrapped up in this.
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What is it gonna be, or what, what am I gonna find out?
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And they, they came back and they said it's a, it is a, it is definitely a tumor.
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And it was over Memorial Day weekend, so literally almost a year to the day, and I I had the surgery.
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I didn't even make it to surgery.
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I had to come in early because I was having such terrible nausea, headaches, drooling was constant and my left, I was even starting to drag my left leg a little bit, it was starting to not function.
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And, gosh, I just remember going in and they said you know, we're gonna be able to remove some of it.
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We're not gonna be able to remove all of it because glioblastoma is a.
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Well, they didn't know this at the time, but they were gonna try to remove as much as possible without risking damaging anything Like my, you know, motor skills or anything with with cognitive abilities or memory loss or anything like that.
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So I had to wait until after Labor or Memorial Day weekend.
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So I had to wait until Tuesday for the pathology report to find out what kind of a tumor it was.
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And so Tuesday the the doctor had come back in and he said it's a, it's a, it's a glioblastoma, it's a malignant tumor.
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And I never heard of GBM.
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I've never heard of it before.
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It's a rare brain cancer and it's the most deadly brain cancer there is, usually, you know, taking overtaking somebody.
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And you know they told me seven to twelve months is how much time I had left, and that's with Treatment, that was with the chemo and the radiation, um, but at the same time I, I guess I always start like, well, what kind of patients do you normally have a make?
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Is this pretty common for someone like I'm, like, what did I do?
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What did I do something that caused this?
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And they said it's.
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They said it can be genetic, it can be, you know, exposure to radio radiation.
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And I don't know, I don't know if I was ever exposed to radiate radiation.
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I may have been, but they said that it's typically found in the brain.
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May have been, but they said that it's typically found in white males.
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You know, 60 to 80 year old, yeah, and it's.
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You know, one in every 300,000 people in the world have GBM or get diagnosed with GBM, and every case is different.
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That's what makes it so just unpredictable, because every single case is, you know, everybody's cancer.
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If you have cancer, the cancer cells are made up of different types of cells or different type of DNA cells that respond differently to different types of medications, and so, you know, part of it was figuring out what my cells are made of.
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They just don't know.
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So it's almost like you're you're playing a guessing game and what they found is that radiation and chemo normally work to help extend somebody's life.
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You know, to that seven to 12 months.
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Most patients don't live beyond two years, and in fact they said most die within that year, and so so for me again, it was almost like when he said those words, I want to say when he said the numbers, it's like that's kind of the elephant in the room, like how much time by I got left, you know, it's like we probably evolved an asset question.
00:19:46.003 --> 00:20:05.684
You know, like if you knew you had X amount of time to live, and I think I remember just at that moment that's when everything became very clear to me like I just felt this overwhelming sense of of peace and calmness about my life.
00:20:05.684 --> 00:20:36.540
You know, because I was thinking this is, you know, like you know beings, like having such a lot or intrinsic love and joy, of fitness, nutrition, my faith, from the time, you know, being baptized all the way up until you know adulthood, and thinking about being in the army and all of the obstacles and challenges being a woman in the military, I guess, in particular to being, at a minority, female in the military a lot of different obstacles to overcome and challenges that you always are thinking about.
00:20:36.540 --> 00:20:46.613
I'm an underdog and I have to, you know I have to, you know, outdo my male counterpart, male counterparts or you know just competitions all in.
00:20:46.613 --> 00:20:58.211
You know, in general and, and you know, being the, the, the officer in charge of the Army resilience program, having to teach it.
00:20:58.211 --> 00:20:59.673
You know, you, you have to live it.
00:20:59.673 --> 00:21:09.683
You can't just teach it and and you know like and not live it, and so those are things that I think you know, practicing those certain things on a daily basis.
00:21:09.683 --> 00:21:12.185
You know devotions and things like that too.
00:21:12.645 --> 00:21:18.510
I think it started to fall to the wayside because I was so caught up in, you know, the rat race of life.
00:21:18.510 --> 00:21:18.872
You know.
00:21:18.872 --> 00:21:27.781
You know kids got sports and you know COVID was just kind of coming to an end too and people were trying to figure things out.
00:21:27.781 --> 00:21:31.345
Everybody was afraid of everything and to go anywhere and do anything.
00:21:31.345 --> 00:21:47.903
But I think, like I said, that entire year I mean the amount of support from my friends, from my army, army, friends and family, my own family, my church family, my fitness family.
00:21:47.903 --> 00:21:50.424
It was just overwhelming the support that I got.
00:21:50.424 --> 00:22:01.575
I mean, they, they, they ran a you know a competition in my name and I, you know, got to see all these people that came for me to you know compete and and it was just a really you know awesome experience.
00:22:01.575 --> 00:22:11.707
And they did that in in September and I still remember thinking like this was, you know, in June, that they were starting to plan for it and I was like I mean, I really hope I'm alive in September to see that.
00:22:11.727 --> 00:22:19.192
You know, just to think about you know the future in in terms of I wonder if I'm going to be there for that and be okay with that.
00:22:19.192 --> 00:22:33.251
You know, you know, sadly, the things that you're going to miss out on, but I know that you know, no matter what, I don't have any control over this, it's not something that I can, you know.
00:22:33.251 --> 00:22:39.819
I can, you know, eat the right foods, I can exercise, but you know it's not those things don't cure, cure, cure cancer.
00:22:39.819 --> 00:22:49.026
This is what God had in store for me and I really think that that it's a message.
00:22:49.026 --> 00:22:58.573
It's a clear message, because I think, when I started talking about it to those around me too, they're like I, you know, like I'm going to start, you know, spending more time with my family.
00:22:58.573 --> 00:23:08.839
I'm going to start, you know, if anything it it made people realize that we just can't take, can't take life for granted, can't take what we've been given and what we've been blessed with.
00:23:08.839 --> 00:23:18.950
Our time here on earth is limited and you know the, the glory that will, that will, that we will see.
00:23:18.950 --> 00:23:22.874
You know Romans 8, 18, I always think of that Bible passage in particular.
00:23:22.874 --> 00:23:28.839
You know, all the sufferings that we have in life now are, you know, don't compare to what will be revealed to us later.
00:23:28.839 --> 00:23:30.441
So I think of that too.
00:23:30.441 --> 00:23:32.542
But I think that that's it.
00:23:32.563 --> 00:23:36.405
The hardest part is, you know, knowing what you're leaving behind.
00:23:36.405 --> 00:23:39.568
And I'm, I'm, I think I'm a natural empath.
00:23:39.568 --> 00:23:42.131
Like I, I feel what other people feel, and I can do it.
00:23:42.131 --> 00:23:58.470
You know you walk into a room and you can, kind of you know you, you kind of you feel the energy from different people, or you, or you know you feel their, their lack of energy, and you know those are the things that you know I, you know, with my son too.
00:23:58.470 --> 00:23:59.451
It's like I just I don't.
00:23:59.451 --> 00:24:24.599
I want him to always feel, you know my energy around, you know, even when I am gone, and so I think that's just the hardest part is not knowing I'm going to miss some of those things, but at the same time, you know, staying positive about, about the future, because there are, there are a lot of I shouldn't say a lot, but there are people that make it to you know 510.
00:24:24.599 --> 00:24:30.530
I think I met somebody the other day that it's been living with GBM for, I think, 19 years.
00:24:30.530 --> 00:24:31.593
Oh, yeah.
00:24:32.501 --> 00:24:35.210
Yeah, she's had like nine surgeries, maybe 10.
00:24:35.210 --> 00:24:48.115
And you know it's struggling, but she's, she's happy and she's just, you know, in in awe of God as well.
00:24:48.115 --> 00:24:55.070
So those, you know, those people that I talked to too, are a sense of comfort and inspiration for me too.
00:24:56.859 --> 00:25:01.811
Do you, do you have like a support group, or how did you get into contact with the?
00:25:03.035 --> 00:25:04.819
Facebook has quite a few support groups for you.
00:25:04.819 --> 00:25:09.962
I'm support groups for glioblastoma, and, and there's so much.
00:25:09.962 --> 00:25:10.703
And then there's a.
00:25:10.703 --> 00:25:15.790
There's support groups for caregivers too, because that's something that that we don't often think about.
00:25:15.790 --> 00:25:17.433
Because I mean me personally.
00:25:17.433 --> 00:25:28.314
I do Because, like I said, I I do tend to be an empath when it comes to other people, but I want to you don't think of the people that are.
00:25:29.194 --> 00:25:32.386
I hate this, I mean it sounds kind of mean, but they're stuck caring for you.
00:25:32.386 --> 00:25:35.224
I know they don't look at it like that.
00:25:35.224 --> 00:25:36.821
I guess I was.
00:25:36.821 --> 00:25:52.625
I think about it in those terms too, because I feel like you know, you feel somewhat of a burden, you know being that person, but I know, I know that they don't feel like that and most not.
00:25:52.625 --> 00:25:57.575
I can't think of one person, every single person is all you know from church like what can I do for you?
00:25:57.575 --> 00:26:04.938
You know and that was overwhelming at first too because I don't know I, you know I always, I don't know you can pray for me.
00:26:04.938 --> 00:26:05.839
That's what I need.
00:26:05.839 --> 00:26:11.573
I need prayers, and you know my family was, has always been there for me.
00:26:11.573 --> 00:26:21.839
You know my sister, you know Johanna, and she came up with her girls and they spent the summer, literally they spent the summer with me helping out at home while I was going through chemo and radiation.
00:26:21.839 --> 00:26:35.809
And my brother you know, junior tube he's he's he's been a pastor for gosh 20 years now and he's now the Dean at Michigan Lutheran High School in St Joseph.
00:26:35.809 --> 00:26:43.819
Yeah, so he, he and his family, he had come up for a while to help out and periodically.
00:26:43.819 --> 00:26:51.942
But you know, and when you guys asked me to do this, I was, you know, I am, I still feel well and I'm doing okay.
00:26:52.022 --> 00:26:59.819
Yet but my last MRI did reveal tumor regrowth and that it was like in the it's in the exact same spot.
00:26:59.819 --> 00:27:10.839
So it's this side of my head and it's like a C shaped here where they will just they'll cut an incision in the same exact spot and try to debulk it as much as possible.
00:27:10.839 --> 00:27:14.448
And glioblastoma is a is a cancer that it's.
00:27:14.448 --> 00:27:18.317
It has like tentacles that are not seen.
00:27:18.317 --> 00:27:19.799
You can't see them in an MRI.
00:27:19.799 --> 00:27:39.633
So even if the tumor looks like it's in a certain location, the origin of it is probably somewhere else in your brain and it more than likely spreads and and so like I've met people, like one of my friends I just became friends with because she has GBM and she's had it for three years.
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