Latest / Minnesota Masonic Histories and Mysteries / Episode 67. A Warrior's Story (ft. Mike Neeson)
Transcript
- 0:00Hi everyone.
- 0:00Welcome back.
- 0:01It's another episode of Minnesota Masonic Histories and Mysteries.
- 0:05My guest today is Mike Neeson.
- 0:08He's been married to his wife Patty for 32 years, has two sons, Nick and Ben that are 28 and 26 years old, respectively.
- 0:16Mike was born in St.
- 0:17Paul and moved to Stillwater when he was five years old.
- 0:21Attended school here locally and then graduated from the University of Wisconsin River Falls in 86.
- 0:28Mike worked for Anderson Windows and patio doors for 30 years, retiring just a few years ago.
- 0:34A big fan of golfing, bike riding, playing tennis, skiing, a pontoon enthusiast, and some travel in there too.
- 0:42A stage four colorectal cancer diagnosis in 2008 when he was 45, has kept him very involved in volunteering with the University of Minnesota in support of cancer patients.
- 0:54Mike and his wife, along with another couple, have raised approximately one and a half million dollars with 100% of these funds.
- 1:01Going to colorectal research at the U of M Masonic Cancer Center.
- 1:05Mike, welcome.
- 1:06Well, thanks for having me here today.
- 1:08I appreciate it.
- 1:09Before we talk about your cancer journey, tell us a bit more about you.
- 1:12You're from this region, retiring not terribly long ago.
- 1:17Yeah, I, I grew up here in the Midwest, as you said.
- 1:19Grew up in St.
- 1:20Paul, uh, moved to still are when I was, uh, very young, uh, probably about five years old.
- 1:26had a great life there, you know, uh, enjoyed the, the local schools and activities there.
- 1:31as you said, uh, went over to Wisconsin for, uh, uh, undergrad school then, uh, started shortly after that at Anderson Windows and my career started out in New Jersey.
- 1:41When you, when you sign up at.
- 1:43Anderson for a sales job, typically they're gonna send you somewhere else, uh, in the country.
- 1:48So New Jersey was, uh, where I was, uh, sent and being a Midwest kid, you know, that really changed.
- 1:55Uh, how was that?
- 1:56Um, you know, I, I was single at the time.
- 1:59so the thing I really liked about it, there was a lot of other, uh, single Anderson sales reps, guys, you know, typically under 35.
- 2:08And, uh, you know, the thing in the Midwest here.
- 2:11Uh, you know, in two hours you're not very far.
- 2:14You're down to Mankato, you're up to Duluth.
- 2:17You know, from where I lived in New Jersey, in two hours I could be in New York, dc, Baltimore, Philadelphia.
- 2:22So, you know, I appreciated that.
- 2:24And, uh, you know, being single out there and I like to play golf and my friend, so almost every weekend, you know, we'd just take turns, uh, you know, showing up at somebody else's place to play golf for the weekend.
- 2:34So.
- 2:35you know, it was enjoyable there, but I, you know, I don't think I would've wanted to raise kids and the family, um, you know, they talk about East Coast and it's the fast pace of life.
- 2:45I always thought that was a little ironic because to me everything was really slow.
- 2:50If I went to the bank, there was 12, 12 people ahead of me, so it was slow If I went to the grocery store, you know, it was slow.
- 2:57The post office, whatever, you know, traffic, obviously.
- 3:00Yeah.
- 3:00So, you know, they talk about the pace of life, but I, I always thought that was a little, ironic because in many facets it's not fast.
- 3:08I had a work transfer to Boston for a couple years, and we came back from that thinking Boston, New York, great places to visit.
- 3:17But living, I had the opportunity to come back to Minneapolis, St.
- 3:21Paul and had a whole new, a renewed appreciation for coming back to the Midwest.
- 3:25Yeah, me, me too.
- 3:26I, I'm really glad I spent a few years out there.
- 3:28but this is where I was born and raised and I, I think, you know, kind of, uh, my personality and, and some of my interest, you know, uh, align a little better here in the Midwest.
- 3:37How crowded was the sales market out there to be a new guy?
- 3:40A rookie, you're single.
- 3:42Was that a tough market to crack or were there opportunities everywhere?
- 3:45Uh, and Anderson now is, is uh, is pretty much nationwide, but you know, it's 130 3-year-old company now.
- 3:53For a long time, it was Midwest and East coast.
- 3:56Um, along the shore out there where I was in New Jersey, you could literally find 50 homes in a row that were Anderson windows.
- 4:03Really.
- 4:04One that wasn't 40 Anderson is, is kind of out there.
- 4:09It's like Coke or Pepsi or whatever you'd say.
- 4:11It's, it's synonymous with Windows.
- 4:13People would say, That's what they think of for Windows.
- 4:16Now if you're in the Southwest, it's changed a little bit now.
- 4:19but when I was out there, it was a very prominent name.
- 4:23so and, and it wasn't a sales job, like you think you're going house to house or anything like that.
- 4:27We worked through distributors, so all it was really was working with your distributors who had salespeople who called on the lumberyards.
- 4:35Then the lumberyards, you know, deal with the contractors and architects and things like that.
- 4:39So it was really, uh, kind of a multiplication of efforts and as much of a sales job, I would say.
- 4:44It was more of a, a training and education and, um, you know, helping the people, who were really dealing with more of the frontline builders and architects, contractors, things like that.
- 4:55As you were recapping that, in my mind I was thinking about what it would've been like to go door to door and have the door slammed in your face in the old New Jersey, New York cliche.
- 5:04So the arrangement of having distributor and whatnot had to make life a whole lot easier.
- 5:09Oh, yeah.
- 5:10Yeah.
- 5:10You know, but the, and again, this is just my opinion, right?
- 5:13It was to, to make friends out there wasn't real easy.
- 5:17They're a little cliquey, you know?
- 5:19but once you made friends, they were pretty good friends.
- 5:22They, you know, once you could get in, they were pretty tight, pretty loyal.
- 5:26And, uh, I, I used to kid people, I said, you know, I was about the only middle class outta 18 million people living there.
- 5:32You know, being from the Midwest here, I had never seen that kind of wealth.
- 5:36And on the other hand, I had never seen that kind of poverty.
- 5:38And, you know, I used to joke here in the Midwest, uh, I'll just say, in the Twin cities, 70% of the people are middle class.
- 5:46You know, you have 10 or 15% at each end.
- 5:49But out there, to me it was the opposite, you know?
- 5:53Yeah.
- 5:53It was extreme.
- 5:54Extreme wealth along the shore, some of the suburbs of Philadelphia, you know, New York, things like that.
- 6:00And then, like I said, in Camden and parts of Philly, the poverty I had never seen, even if you talk about North Minneapolis.
- 6:07Oh, it, it doesn't hold a candle.
- 6:08No, not even close.
- 6:09You see the full spectrum like you described of both and then everything in between.
- 6:13No doubts.
- 6:14How many years were you out there before you returned to the Midwest?
- 6:17Uh, about two and a half years.
- 6:18Okay.
- 6:19And then when along that journey did you meet Patty?
- 6:22Um, shortly after I came back and, uh, um, one of my friends, uh, and one of her friends set us up on a, a blind date.
- 6:31So many blind date stories and I'm, let me guess, were you reluctant to do it?
- 6:35Were you thinking, oh God, what's this gonna be like?
- 6:37No, no.
- 6:37I'm, I'm super outgoing.
- 6:39I'm always open for.
- 6:41You know, uh, and as we talk today, I'll give you some examples of, of things you'd go that that's not what a normal person would be comfortable doing.
- 6:50Two sons, Nick and Ben.
- 6:52I believe we said they were 28 and 26.
- 6:54Mm-hmm.
- 6:54I'm sure that's gone fast.
- 6:56Uh, I, I can't believe it.
- 6:57I was talking to a friend of mine yesterday.
- 6:59We had a retirement party for, uh, one of my coworkers and, uh, you know, we were talking about our kids and stuff and they both, uh, graduated from the University of Minnesota in Duluth.
- 7:09And it seems like they were just.
- 7:11Starting there and we were just dropping'em off.
- 7:13And now actually they've both been done for years and years, you know.
- 7:15Wow.
- 7:16And so, yeah, it, it's crazy how fast, you know, from when they were, you know, they were both, uh, super involved with, uh, baseball when they were young.
- 7:25And I remember going to all the fields and the games and, you know.
- 7:29Every single weekend.
- 7:30My wife had had one direction with one to Apple Valley.
- 7:33I'd had, you know, the other direction up to Forest Lake or something with the other, and it was a ton of fun.
- 7:38But it sure doesn't seem like that was probably now 15 years ago.
- 7:42You know, and I, I can't believe it.
- 7:44The exhausting schedules I think are continually getting worse for parents.
- 7:49I dunno if worse is the right word.
- 7:50Yeah.
- 7:50But more hectic.
- 7:51The, the tournaments that are year round, the travel.
- 7:54Oh yeah.
- 7:54When you, it's when, when I was in school, you know, e everything was pretty much free.
- 7:58You know, I played in the golf team, I played tennis.
- 8:00Um, now, you know, like you said, the time commitments in the year round and the expenses, Unbelievable.
- 8:06that.
- 8:07A friend of mine has an 8-year-old eight.
- 8:10Relatively new to hockey.
- 8:12Mm-hmm.
- 8:12And there are tournaments in Chicago in travel and when, when I was a kid, it was a seasonal thing, basketball, hockey.
- 8:19And you just picked it up again.
- 8:21Well, I guess that's aging me.
- 8:22Aging us.
- 8:23Yeah.
- 8:23Because now it's a year-round thing.
- 8:24Oh yeah.
- 8:25Everyone's focused on making it to the big time and it, I can't even fathom having kids.
- 8:30In that crucible of activity between schoolwork and extracurriculars and hopefully some other, just hobbies in general.
- 8:37Yeah.
- 8:38When I played baseball, you know, I think most of my games were noon or one, there were no parents there.
- 8:43If dad, if dad showed up, it was a nice surprise.
- 8:45Mm-hmm.
- 8:45But never expected.
- 8:47Right.
- 8:47Sometimes he'd sneak out in June or early July, and you're right, that was just glove over the handlebar and away we went in that little pack of bikes and God, what great memories.
- 8:58So in 2008.
- 9:00You received some devastating news, to say the least.
- 9:04To say the least.
- 9:05Was that a phone call or what led to that appointment that you went in to see a physician?
- 9:10Yeah, I, you know, um, I was diagnosed in, uh, September of oh eight, but, uh, my symptoms really started early in 2008, and I was in perfect health, and I'm telling you, I'm super active, super involved, you know, physical activity.
- 9:24Sure.
- 9:24Things like that.
- 9:25but in, uh, spring of, of 2008, I started to have some unusual, I'll just say.
- 9:31Stomach issues, you know, everything from gas and kind of bloating and, you know, uh, digestive problems, things like that.
- 9:37So I went into my local and I didn't even have a GP think of this.
- 9:41I didn't even have a doctor'cause I hadn't really been in other than maybe for a physical or something, since I was in college.
- 9:48Really?
- 9:48Mm-hmm.
- 9:48You know, playing sports.
- 9:49And, uh, so I went in, he, you know, I explained my symptoms and he said, I, I really, really think you're based on everything you say, you're, you're probably lactose intolerant.
- 9:59You know, what do I know, right?
- 10:00I'm a sure window guy.
- 10:01Yeah.
- 10:02And, uh, and you're healthy otherwise.
- 10:04Oh, I, yeah.
- 10:04It's not like there's some obvious thing of, oh, you should eliminate this or do Right.
- 10:08And I wasn't really, you know, I wasn't fatigued or tired or anything.
- 10:11It was just these stomach issues kind of.
- 10:13So I changed my diet for a few months and it didn't get any better.
- 10:16So I went back in, he said, tell me your symptoms again.
- 10:19Remind me, you know, and so I go through everything again.
- 10:22And he said, uh.
- 10:24I think it's gluten.
- 10:25I think you have gluten issues.
- 10:28So I changed my diet again a few more months.
- 10:30Right.
- 10:30And, but now it's midsummer and, uh, and I'm not getting better.
- 10:34I'm actually getting worse, these symptoms.
- 10:36And now, I have blood in my stool.
- 10:38Oh boy.
- 10:39So that's, you know, kind of a ripe, pretty serious.
- 10:42So that gets your attention.
- 10:44And, uh, so I was 45.
- 10:45And so he said at that time, the, the protocol was really like 50 for.
- 10:50Uh, to have a colonoscopy.
- 10:52So he said, Hey, you know, you're gonna have a colonoscopy in a few years.
- 10:55Let's just do it now.
- 10:56And so I went in and sure enough, I remember waking up outta the sedation and he shows me a photo and he says, do you know what this is?
- 11:04You know, I'm kind of like, I'll go out in a limb and say.
- 11:07It's my colon.
- 11:08You're still under a little Dilaudid.
- 11:09A little, a little.
- 11:10Yeah.
- 11:10Verse said di you know, so I said, you know, it's, I assume it's my colon.
- 11:15He said, yep.
- 11:15And he goes, he points to a spot on.
- 11:17He goes, do you know what this is?
- 11:18And I said, no.
- 11:19He said.
- 11:21That's, that's a mass, a tumor, and we did a biopsy, but we believe it's malignant by, you know, our experience.
- 11:28And he said it's, you know, like three centimeters, it's over an inch.
- 11:33It's very large.
- 11:34Mm-hmm.
- 11:34You know, and so to your point, my, my life changed in a day, you know, in just one.
- 11:40Day.
- 11:41And uh, you know, I was really fortunate when people talk about, you know, sometimes the medical system here, you know, in the health system in the us but, um, I spent a fair amount of time in Canada for one of the companies.
- 11:54Okay.
- 11:54You know, we had acquired, so I had friends there and I, you can say, yeah, things are.
- 11:59You know, maybe free up there, but the time and the delays, you know, here from when I was diagnosed, uh, and then I had all my treatment at the U.
- 12:07I was diagnosed on the 18th of September, and by the first week of October I had already had PET scans, CT scans, MRIs, and I, in that first week I had already started my chemo and radiation.
- 12:21Really?
- 12:21So really from two weeks from when I was diagnosed, I had not only been into the U for.
- 12:27You know, to see an oncologist, colorectal surgeon, urology surgeon, and I was already starting my treatment, all of that in two weeks.
- 12:36It's unheard of.
- 12:37Amazing.
- 12:38So in, in that diagnosis, I.
- 12:40Was a stage four mm-hmm.
- 12:42Colorectal cancer.
- 12:43What, what does that, what did, how did that conversation go?
- 12:46What does that sound like with a doctor?
- 12:48Not good.
- 12:49So, you know, again, I was a lay person and so I, I go in and I had one of the best surgeons in, in the Midwest, and I, I can't say enough about, David Rothenberger, he's renowned, all over the u in the Midwest.
- 13:00And, uh, and it couldn't have been better to deal with.
- 13:03And he, he had said to me.
- 13:05He had looked over all my scans, imaging.
- 13:08He said, you know, this is stage four.
- 13:11And while I'm a late person, I know there's only, there's no stage five and I know four is worse than three than two, you know, and so I said, uh.
- 13:21Well, what's that mean?
- 13:22Tell me more.
- 13:23And he said, well, it's metastasized to your lungs, you know, and then some of my other organs in my, my abdomen.
- 13:30And, so real quick, it got really serious.
- 13:33Yeah.
- 13:33You know, it's one thing to get the diagnosis, but then to hear that it's metastasized and it's spread.
- 13:38I went down, um, for a second opinion to the male.
- 13:43when I speak, I, I say, it's kinda like a car.
- 13:45They, they weren't calloused down there, but they're kinda like the radiator shot, the transmission shot, the engine shot.
- 13:50You know, the, they're kinda like, I, I don't know if it's worth.
- 13:54Maybe we need a new car.
- 13:56You know, I'm not sure it's right, you know, financially prudent to try to, you know, fix this and, and so, but, um, Dr.
- 14:04Rothenberger was great.
- 14:05He said, you know, uh, didn't make any promises.
- 14:08but he was always, you know, encouraging.
- 14:11My oncologist over there.
- 14:12I can't say enough about, um, when I got back from the Mayo with some less than encouraging news, I asked him, and I didn't tell him what the Mayo had said, but, uh, I said, you know, what are my odds?
- 14:25And he said, Mike, unless I can find a whole pile of 45-year-old non-smokers, non-diabetic, really healthy people goes, I, I don't know what your odds are, but he said, and I, I always mention this when I speak, he said, but I'll tell you this, Mike.
- 14:39He goes, at the end of the day.
- 14:41Odds are zero or a hundred'cause it can't be 30% alive.
- 14:45And that really, that really kind of stuck with me.
- 14:48And from that point on I was kind of like, alright, you know, we will give it everything we got.
- 14:52Mm-hmm.
- 14:53You know, and my, uh, actually for stage four, uh, colorectal, uh, cancer patients, even today when I was diagnosed, the five year survival rate was about 6%.
- 15:04Which, you know, it's one out of 17.
- 15:06Right.
- 15:06That's not.
- 15:07Not too encouraging.
- 15:09now, today, um, 16 years later, uh, it's about 12%.
- 15:14So it's still, it's still low.
- 15:16You know, colon cancer is one of these unusual super preventative, right?
- 15:20You're going for your colonoscopy.
- 15:22All this starts as a polyp.
- 15:24If they have the polyp, they don't even tell you, right?
- 15:26Come back in two weeks.
- 15:27They just take it off right in there.
- 15:28Do it.
- 15:28Yeah.
- 15:28So it's.
- 15:29In a way it's really, really preventative.
- 15:33'cause there aren't many other cancers where you could, really get that early detection that, that easy.
- 15:39I mean, you know, without, uh, without a, a lot of involvement.
- 15:44But, uh, you know, so I started, uh, you know, all my chemo and radiation, the, the fall of oh eight.
- 15:50Um, and fast.
- 15:52It was just about immediate after your diagnosis.
- 15:54Oh yeah.
- 15:54They got me in, you know, right away and, uh, so I ended up actually, that fall going through, um, 40, uh, radiation treatments Monday through Friday.
- 16:0440 40 for eight weeks.
- 16:06Oh yeah.
- 16:06Monday through Friday.
- 16:07Eight weeks, every single day.
- 16:09Um, and the chemo, and then they gave me.
- 16:11December off, you know, that was to kind of recover.
- 16:15They had already told me surgery would be in early January, so I had December off, but, um, had went back in for another, uh, PET scan, MRI, things like that.
- 16:24I was getting CT scans, uh, pretty frequently, but the tumor had shrunk by about 50% Really when I went in, in early December.
- 16:34And, you know, I remember asking Rothenberg, he, he said, that's very encouraging.
- 16:39I said, I, I get that and, but it's gonna come out anyway.
- 16:43Why?
- 16:43Again, as a lay person, I'm like, why does that matter?
- 16:46And he, he said, well, you know, if, if the large tumor is being impacted, all these things on the periphery, these microscopic cells, there's a good chance those are being impacted.
- 16:58And so that, you know, made sense to me.
- 16:59And so, Then it, uh, I, and I knew as soon as I went out because my tumor was extremely low in my colon, actually, on day one, he said, you're gonna have a colostomy.
- 17:12Yeah.
- 17:12Not there's a chance price.
- 17:14No.
- 17:15100, not the 99, 100 because it was so low.
- 17:18He said, when we take that mass out and then um, some of the surrounding tissue, So I knew that, but you know, that didn't really bother me.
- 17:27I didn't think about that much.
- 17:28I'll fall.
- 17:30Because I was really kind of in the battle with the chemo and the radiation Sure.
- 17:33And, and things like that.
- 17:34But then in December, right now I'm not, I'm done with the chemo and radiation.
- 17:39And so I start thinking about that and I don't know anyone with a colostomy, you know?
- 17:44Yeah.
- 17:44If, if all of a sudden tomorrow you were diagnosed with diabetes, you, you know, whether people with that and maybe somebody with a pump and you can ask questions, whatever.
- 17:52But, uh, but I didn't and so, I was kind of in denial a little bit.
- 17:57I thought, well, maybe because this tumor shrunk, maybe when they actually get in there, they won't have to take as much and I won't end up with it.
- 18:04You know, I was kind of, and that's not my nature to kind of be in denial, but in, in that case, I was, and so late December, I go in and they do.
- 18:12What's called marking you where the stoma is gonna be.
- 18:15Okay.
- 18:15You know, kind of in your lower, under your belt line, you know, but they mark me twice left and right and I'm like, well maybe they, until they're in there for the surgery, they won't know if they're gonna put it on the left or the right side.
- 18:27Yeah.
- 18:28So I go in on January 6th and, uh, Dr.
- 18:34Rothenberger, who again think the world of says, this is Dr.
- 18:38Sean Elliott.
- 18:39He's gonna take out your bladder.
- 18:42Oh boy.
- 18:42And I'm like.
- 18:44Humor me, kind of like, why, why would we do that?
- 18:47You know, I don't have bladder cancer or anything, but what had happened is through those 40 radiation treatments, which probably helped save my life, but it's not without collateral damage.
- 18:57Yeah.
- 18:58And so it fried, um, what are called, um, my ureters And so he said, and he wasn't, he, he meant this in the nicest way.
- 19:08He said, if, if you're used, if you get used to one bag, you'll get used to two.
- 19:14And so I literally said to him, I said, whatever type of sedation you're gonna give me in a few minutes, I said, you gimme something right now.
- 19:23But he made the right call because you know, I've been a double ostomy patient here now for, It'll be 17 years almost.
- 19:30Yeah.
- 19:30And I'm, I'm telling you, and it's all right.
- 19:33Perspective and how you handle things.
- 19:35I, I'm telling you, it's just not a big deal.
- 19:37It's just not.
- 19:38Yeah.
- 19:38You know, I, I golf, I ski, I do everything.
- 19:40I travel.
- 19:41Um, and I tell people,'cause I deal with a lot of ostomy patients pre and post-surgery.
- 19:47Really?
- 19:47And I tell people, if you think it's gonna be a big deal.
- 19:51It's gonna be a big deal.
- 19:52Mm-hmm.
- 19:53If you don't, you know, people deal with all kinds of things.
- 19:56Right.
- 19:57but sometimes paralysis and, uh, you know, amputations and Sure.
- 20:02All the things people deal with.
- 20:03And then people go, oh, I couldn't deal with that.
- 20:05Yeah, you could.
- 20:06Mm-hmm.
- 20:07So in 2008 you received the news stage four colorectal.
- 20:11You go through this regimen, 40 sessions of chemo, the December off to get lost in your thoughts.
- 20:17Here.
- 20:18Here we are though.
- 20:18Fast forward 16, almost 17 years later, that is defying some serious odds.
- 20:24Oh, a absolutely, because, You know, after, so I was in the hospital 24 days, you know, go home, get used to my new body.
- 20:31Right?
- 20:31You, you have, you know, urostomy, mm-hmm.
- 20:34Colostomy, things like that.
- 20:35I.
- 20:35and then, you know, I go back in, see my oncologist a little, you know, few weeks later and he says, Hey, we're gonna start another 26 weeks of chemo.
- 20:43Oh my God.
- 20:44So that gets me down to, you know, around the 4th of July.
- 20:48And you know what, Reid, the, the chemo never bothered me too much.
- 20:52The radiation is brutal.
- 20:54especially depending where you get it.
- 20:56I, I'm not saying breast cancer or something would be easier, but you know, if you're getting.
- 21:02Radiation right in your rectum effect.
- 21:06I, I, early on, um, it was so painful.
- 21:10I was kidding.
- 21:11My radiologist, Dr.
- 21:12Chen, I said, uh.
- 21:14This isn't gonna be a problem.
- 21:15'cause I said I'm done eating.
- 21:17I, I would because I'm like, if nothing goes in, nothing comes out.
- 21:20Right.
- 21:20And she, she says, that's not realistic.
- 21:23I said, I realize that.
- 21:24I'm just joking.
- 21:26But anyway, so I go through the other 26 weeks of chemo.
- 21:29Um, so that gets me to the summer of 2009.
- 21:33Um, I'm not working during this time.
- 21:35My employer couldn't have been better.
- 21:37I, I had a pretty big job.
- 21:39they.
- 21:40Back filled it.
- 21:41But when I came back in October of that year, it was my job.
- 21:44It wasn't like, Hey, you know, we have a project to put you on.
- 21:47Your job's gone.
- 21:48I mean, they, they, and they were checking in with me all the time.
- 21:50Couldn't have been better.
- 21:51But, so that summer, um, I finished the chemo in July.
- 21:55I get back to, to golfing a little bit, which is a big deal for me.
- 21:59And so my friends, who I haven't seen in a long time said, uh, you know, like, how's your golf game?
- 22:04I said, it's fabulous.
- 22:06I said, I haven't hit a bad shot yet.
- 22:08And they're like.
- 22:09What do you mean?
- 22:09You know, what's your deal?
- 22:10And I, and I, you know, if you're a golfer, I'm like, it can go in the pond, it can go out of bounds, it can go in the bunker.
- 22:16There are no bad shots.
- 22:18Right.
- 22:18It, it's all perspective.
- 22:20And, uh, so then I went back to, uh, work in October, uh, full-time, you know, in October, about one year later.
- 22:28Um, yeah.
- 22:28Um, about exactly from what, I'm sorry.
- 22:30And you know what Rothenberger told me?
- 22:32He goes, this is gonna be a one year deal.
- 22:33And it literally.
- 22:34It was a one year deal, but then, you know, we had talked about being stage four, so did metastasize right away, even at my early diagnosis, um, into both lungs.
- 22:45I.
- 22:46And at that time they weren't too concerned about,'cause they're just trying to deal with the colon cancer.
- 22:51Right?
- 22:51Sure.
- 22:51but now, you know, I go back to work in, October of oh nine.
- 22:56have a really good, you know, two years.
- 22:58I'm going in every, quarter, every three months for checkups, things like that.
- 23:03things are okay.
- 23:04But then in the fall, two years from then in the fall of 2011.
- 23:09I got a cough and I can't shake it.
- 23:11And it's, it's brutal.
- 23:13And so I go in early.
- 23:15I had just for cancer patients the first two years you go in for CT scans, blood work, things like that, every 12 weeks, every quarter.
- 23:24But if you can make it two years, then they move you to six months.
- 23:28So I had just gotten onto my six months, but I got this cough and I'm not gonna wait.
- 23:32I'm only two, three months into, you know, the six months.
- 23:36So I go in early.
- 23:38And they said, sure enough, one of the lobes, one of the tumors in one of my lobes had started to really grow.
- 23:46And so they said, we gotta remove that.
- 23:49So I go in for what's called the lobectomy, and you have three lobes in your right, two in your left.
- 23:54And uh, I was, when I was diagnosed, I had five tumors, one in every lobe.
- 24:03If they were all in one, you, you know, you could, mine were all spread out.
- 24:07So that was why the mail gave me such a dire prognosis.
- 24:11so I have it removed and instead of a 24 day hospital stay read, I literally go in on a Friday morning.
- 24:19I am out Saturday night, compared to what I'm used to, I'm, I'm like, this was.
- 24:24Pretty easy, right?
- 24:25Sure.
- 24:26So, and it, it really wasn't too painful or anything, you know?
- 24:29so it's a couple weeks after that, I'm back home and I go see my oncologist, he says, how's it going?
- 24:35I'm like, you know, it's not too painful.
- 24:37I said, I was kind of in and out, literally like 36 hours.
- 24:41Mm-hmm.
- 24:41and he said, well, I'm, I'm glad it went well because.
- 24:44We're gonna start another 26 weeks of chemo.
- 24:48So now this is gonna be 62 weeks.
- 24:50And he said, plus we're going to do two types of chemo.
- 24:54We're doing the oral, what's called Xeloda, and then we're also gonna do an IV infusion called Oxaliplatin, which you wouldn't wish on your worst enemy.
- 25:04Really?
- 25:04It's you.
- 25:04You can't even imagine.
- 25:06It's highly, highly metallic.
- 25:07So everything, oh yeah.
- 25:09Uh.
- 25:10Feels cold and I was taking it, think of this in the winter, but you can't really even drink, uh, room temperature water.
- 25:17'cause let's say that's 65 degrees.
- 25:19Mm-hmm.
- 25:19That feels incredibly cold.
- 25:22so, you know, I went months and it's just tea.
- 25:26Think of this warm ensure, like e everything.
- 25:28You can't have anything that's remotely.
- 25:31Yeah.
- 25:31so I, I get through, I'm almost through that 26 weeks.
- 25:36I.
- 25:37And, uh, which puts you at a chemo schedule now of over a year if you're Oh, yeah, yeah.
- 25:42Adding the weeks out now.
- 25:43Yeah.
- 25:4362 weeks.
- 25:44I did.
- 25:44I did 10, 10 weeks in the beginning, then 26, then another 26.
- 25:48But before I can finish that second 26 weeks, I start getting brutal kidney pain.
- 25:54And so I, I go in and I see Dr.
- 25:58Elliot, my urology surgeon, and what has happened, I, I mentioned earlier, everybody, for the most part, right?
- 26:04You have two kidneys and you have what are called ureters.
- 26:06They're like straws that drain your kidney down to your bladder.
- 26:09And although I don't have the bladder, I got the, the ureters, the.
- 26:12Again, picture'em like straws, but what has happened from all the radiation and it took a while, but I have what are called strictures or kinks in a straw.
- 26:22So if you think about a straw, instead of it being clear, you know, there, there's kinks in it.
- 26:27And so the urine can't really, I.
- 26:30Come out of your kidneys and drain through these straws, you know, seamlessly, because there's kind of kinks if you think of a hose or a straw.
- 26:37So Dr.
- 26:39Elliot explains, he says, we're gonna put in stents, you know, to, to open these ureters and, and these.
- 26:47And I, I swear Reed, I golfed with a couple guys and I worked with a couple guys who had heart stents, but obviously I've never seen one.
- 26:55But I remember sitting in Dr.
- 26:56Elliot's office and he says, we're gonna put in stints, you know, to keep this open so the urine can flow through.
- 27:03I swear, Reed, even though I haven't seen one, I take my fingers and I hold'em like this, like an inch apart.
- 27:09And I say, I get the concept.
- 27:12He looks at me and goes, I don't think you do.
- 27:15He said, these are gonna be 16 inches long.
- 27:17Oh my God.
- 27:18And he said, we're gonna change'em every 70 days for the rest of your life.
- 27:26How were you maintaining any level of.
- 27:32Optimism of, okay, well this is the next, this is the next chapter.
- 27:36This is the next part of the to-do list.
- 27:39It, you know, part of it.
- 27:40How, how do you part of It's just the way I was wired.
- 27:42Okay.
- 27:42I, I, I, I, you know, I, I never, and I, I'm not boasting, but I, I never, once through the whole thing ever was like, why me?
- 27:51Or, you know, I, I wish I had my old life back.
- 27:55'cause that was just kind of not a good use of time or energy'cause it was more always about going forward and, and again, I'm just kind of wired as a pretty optimistic person.
- 28:05My friends, like I said, I play a ton of golf and I.
- 28:09my golf game, right?
- 28:10Everybody got strong points, weak points.
- 28:12You know, my strong point is, is putting be, and, and they're, you know, and some of it's mental, and I say I actually, and obviously I don't, but I, I think every 15, 18, I don't care if 22 foot put, I actually believe I'll make everyone.
- 28:25I don't.
- 28:26But it's that mentality, you know, uh, of that.
- 28:29But with the stint, so if you think about now, it's been.
- 28:33Because I didn't have those right away.
- 28:34It took two years.
- 28:35So it's been about 14 years.
- 28:37I've had the stints.
- 28:38Now I go in, I'll go in a week from Monday here on the 14th.
- 28:41So I go in every 55 days here, so it's been 14 years.
- 28:44So I go in seven times a year.
- 28:47first of all, your level of optimism is.
- 28:53I've never heard a story like this.
- 28:54And then to be in the face of such adversity, just dealing with it.
- 28:59I, I was listening to a different podcast recently and the line of the, the encouragement of the guest was, I.
- 29:07How do we maintain indifference to things that we can't control?
- 29:11And while Sure, being a happy warrior and being an optimist, we, someone could set out to do that, but what you've been through would've taken down a mere mortal How was your experience at the Masonic Cancer Center?
- 29:25I know Dr.
- 29:26Rothenberger was a pivotal person along this journey.
- 29:29Who else?
- 29:30What else?
- 29:31I'd love to hear more about what that Yeah, it's interesting.
- 29:34You know, I've referred a lot of people over the years, you know, to, to the U in the Masonic Cancer Center there.
- 29:40and I was just telling a story, um, the other day, um, to a patient I was working with.
- 29:45you know, again, not in a medical sense, but just in a support sense.
- 29:49Mm-hmm.
- 29:50You know, it's a very, very large place and I had a urology, surgeon, oncologist, radiologist, you know, colorectal surgeon.
- 29:57The, the thing that's amazing over there, Reed, very large people in different buildings.
- 30:02The left hand always knows what the right hand's doing.
- 30:05Really ne never once in the 16 years I've been.
- 30:08Dealing over there has somebody said, well, I don't have those test results.
- 30:12I don't have those blood results, or, I can't see that scan or image.
- 30:15I, I mean, never once.
- 30:17It's so seamless.
- 30:18I, and you know, my local, um, hospital clinic, I.
- 30:23it's one, 100th of the size and, and something's always getting lost.
- 30:27Sure.
- 30:27Or somebody doesn't know, or they can't find something.
- 30:29I don't know.
- 30:29Yeah.
- 30:30You know, but I, I can't say enough good things about the u and and that's why we, you know, um, ended up kind of in a philanthropic, charity.
- 30:39Uh, we've been super supportive, you know, trying to give back.
- 30:42Yes.
- 30:42Um, not only, uh, financially, but I've probably spoken with, I'm just gonna guess.
- 30:50200 plus, patients, either cancer or ostomy patients.
- 30:53A lot of ostomy patients.
- 30:55you know.
- 30:55So they'll refer a lot of people to me.
- 30:58again, not in a medical sense, but you know, how do I deal with this?
- 31:01How do I, you know, what, can I eat?
- 31:04Can I swim when I travel?
- 31:06It's, uh, I, I get a lot of fulfillment trying to, uh, help people with some of their anxiety and fear.
- 31:13know, people when they, when they don't know, they speculate.
- 31:17And typically when you speculate, it's to the negative.
- 31:19That's where the trouble begins.
- 31:21And.
- 31:22This podcast has a wide reach, and not all of our listeners are just regional or even within the US only, but for our listeners, it may not be familiar.
- 31:32The Masonic Cancer Center at the University of Minnesota is one of the nation's leading comprehensive cancer centers, M Health Fairview, combining a history of science and discovery with a commitment to delivering personalized cancer care for every single family they serve.
- 31:50And this is a partnership that allows them at mHealth Fairview to provide the most advanced treatment options in early phase clinical trials.
- 32:00We're recording this in April of this year.
- 32:02In a few weeks we have our annual Masonic Cancer Center dinner, and over the last handful of years, we've had the privilege of hosting and hearing from Dr.
- 32:11Douglas Yee.
- 32:13He's a medical oncologist.
- 32:14He specializes in breast cancer.
- 32:16Dr.
- 32:17Jen Poynter, she's a professor of epidemiology, clinical research.
- 32:21She's overseeing the 10,000 family study, which is an incredible cohort study going on that is in this region, not just limited to Minnesota.
- 32:32Last year, Dr.
- 32:33Jacob Toler spoke at the Masonic Cancer Center.
- 32:36He's in pediatrics, blood and marrow transplant, cellular therapy, and it was very special to hear him say.
- 32:43That they're able to do the work that they do at the Masonic Cancer Center, the Children's Hospital, because of the Masons, because of the free Masons of Minnesota and of across our country that have contributed to, to this endeavor.
- 32:58It's very special for the Masons, especially in Minnesota, to feel as though they have a part of all of these tremendous things that are happening, especially at the Masonic Cancer Center in the.
- 33:11Diligent search for a cure and for research breakthroughs that are happening at a very breakneck pace.
- 33:17From what we're, from what we are told.
- 33:19Mm-hmm.
- 33:20In my journeys, I visit a lot of lodges.
- 33:22I visit with business leaders about how they can contribute to Masonic Cancer Center or, or any one of the number of facilities we have.
- 33:30And you, you have a charity specifically that you and your wife are I.
- 33:35And one and one other couple.
- 33:36Yeah.
- 33:37Take the lead on.
- 33:37Tell us more about that.
- 33:39well, one of our friends, he lost his, uh, wife, uh, Danez and Coates, uh, to colon cancer, uh, back in 2015.
- 33:48we were friends and, um.
- 33:51hers was very, very aggressive.
- 33:53and unfortunately for her it was, it was a short, um, a short battle.
- 33:58But, um, before she passed, she started, um, a research fund.
- 34:03And, uh, I.
- 34:05The two couples, my wife and I, and then, Dick and and his new wife, uh, Lyne have, uh, we've continued that on and, uh, with, you know, the help of the u you know, we've been very successful in, in raising money.
- 34:19We have a big annual, Boat ride, paddle, boat, ride in the St.
- 34:22Croix every year.
- 34:23and I think we've done it now nine years.
- 34:25And as you say, like Dr.
- 34:26Y has attended each year, the, the, the faculty at the U has been super supportive.
- 34:32I.
- 34:32Of, you know, our charity and, and you know, you could say, well, sure they're getting all the proceeds, but I think it's more than that.
- 34:40They, they're very engaged in, in the work we're doing.
- 34:43Um, and it's important work, you know, um, But a lot of the work we've done and the money we've raised, we refer to it as seed money.
- 34:52So, you know, some people think, you know that the NIH or the U just has a big pile of money and somebody has an idea and you know, and it gets funded that that's not how it works.
- 35:04And so the money we raise, a lot of times they might take 50,$75,000 and they'll use it in a proof of concept.
- 35:14And sometimes that bears fruit, right?
- 35:16Sometimes it doesn't.
- 35:17But in some of the cases where it has.
- 35:20The D-O-D-N-I-H some of these, have ended up giving one to even$3 million grants off of, uh, projects that we helped fund in their infancy.
- 35:33So it's, it's very important work, to get started.
- 35:36Or a lot of that work never would because, uh, some of the labs we support at the u and some of the research, they, they simply wouldn't have funding if it wasn't for groups like us.
- 35:48and I really appreciate what you do in supporting, say a new patient who, someone's going to be undergoing a new regimen of treatment, or have an operation, have a procedure where obviously nerves and stress are at an all time high.
- 36:02And what you do, it sounds like to mentor, coach, help give them some affirmation that You're gonna come out of this just fine and it's gonna be okay.
- 36:12I, that's gotta, the peace of mind of that is Yeah.
- 36:15I, I didn't have that and I really wish I would've.
- 36:18And so I enjoy, as I said earlier, trying to take care of some of that fear and anxiety for people.
- 36:24And, you know, people obviously, are sometimes, I'll just say maybe a little hesitant to share some of their fears with family.
- 36:34You know, our close friends, if it's things with mortality or, uh, other things, you know, I'm a little more neutral, right?
- 36:42They don't know me.
- 36:43So sometimes they will share some things and ask some questions, that maybe they wouldn't with immediate family out of fear of, you know, scaring them or something like that.
- 36:54So, you know, my oncologist one time and again has referred a number of people to me.
- 37:00Said, you know, Mike, I might deal with 2000 people a year, right?
- 37:05Well, he said, I can never sit with somebody and go, I know exactly what you're going through because, uh, I'll tell you, for a lot of cancer patients, the 2, 3, 4 in the morning, it's hell because your family's all sleeping.
- 37:20You know, I think back of the years when I was going through all the chemo, the radiation, things like that, and this is common with a, a number of the people I've.
- 37:27You know, spoken to over the years, it, it might, you know, and, and you're pretty sick, so you don't, you know, somebody says, well, read a book or watch a movie, or, you know, listen to, it's hard to focus on things'cause between the nausea and some of the, you know, it, it's tough And, you know, I remember read it might be two 20 in the morning.
- 37:47I'm up sitting in the chair, the couch, everybody's sleeping.
- 37:51And I'd try and pass the time, right.
- 37:53I might try and read a little bit.
- 37:54I might try to, you know, whatever.
- 37:56Do crossword puzzle, Sudoku, whatever.
- 37:59And I'm not kidding, you read an hour later, it's two 30, been 10 minutes.
- 38:05No, I, I, that's how, how slow it's dark.
- 38:08Yeah.
- 38:09You know, you don't want to make noise, you know, on the tv, on everybody's trying to sleep.
- 38:13those nights for people can be just.
- 38:16Agonizing, it's so slow, you know, during the day it's bright out, you know, it, it's just different.
- 38:23But, uh, the, the nights can be really long, so I, I try to help people with some tips to, you know, try and get through, uh, some of that.
- 38:32Um, everybody reacts different to the chemo and the radiation.
- 38:37But there are things you can do to, you know, obviously your medical team helps with, um, nausea medications and, and things like that.
- 38:44And some work better than others and you can go back and try others.
- 38:47But there's, there's things you can do on your own.
- 38:50sometimes it's acupuncture, sometimes meditation.
- 38:53You, you kind of have to find your happy place a little bit, you know?
- 38:58And, and that's nothing.
- 39:00I'll say maybe your medical team there, there's, there's things they do, right?
- 39:05They carry a lot of load and a lot of the weight, but there are things you, you have to do on your own.
- 39:13Having you as an advocate though, in that position is, that's just seems invaluable for a new patient of family.
- 39:21The perspective that you can provide and all these years later your, your story of being a survivor.
- 39:28And still being so active as an advocate and as an ambassador, really, that it's just, it's tremendous.
- 39:34I'm going to put my contact information in the bio of this podcast, and if somebody wants to learn more about your charity, I encourage them to reach out to me and I will coordinate that with you.
- 39:48And we, we also talk frequently about a specific donation to Minnesota Masonic Charities that will help us ensure that that donation goes specifically and directly to where someone wants it to go.
- 40:02It, It's more efficient to do that, to go directly through us instead of just writing a a check and sending it in.
- 40:09That way we can know exactly where those funds and that support is going to go.
- 40:13So I will have that in the bio when we, when this goes live, 16, almost 17 years later, you're a paragon of positivity.
- 40:25what advice would you give someone who is in the midst of their journey with cancer, with disease, or even at the front end of it?
- 40:34you know, you take things one day at a time.
- 40:36You don't try to look out too far'cause it's for most people, and, and I typically deal with stage three, stage four, pretty advanced, it, it's a long road.
- 40:46So I'm like, you know what, you take it one day at a time.
- 40:49You don't try to say, Hey.
- 40:51Two years from today, I'll be great.
- 40:54You know, hopefully you will.
- 40:55But it, you know, I, it's kind of like the eating the elephant thing, right?
- 40:59One, one bite at a time.
- 41:01And what I tell people, and this is my personal experience, and a lot of the people I've, you know, uh, worked with over the years, you know, you, you go in and you very often you get a good scan, good blood test, good imaging, whatever.
- 41:18But I tell people, be careful about spiking the football.
- 41:22I, I'm not trying to reign on their parade.
- 41:24But then you go in, you know, what the next time and they say, you know, we see something.
- 41:29We're not sure what it's, and you don't want to get crazy despondent because then when you go in 10 weeks later, they're like, you know, whatever that was, it disappeared.
- 41:40So, the best advice I try to give people, don't get too high.
- 41:46Don't get too low, I will tell'em, it's, it's linear, you know, your improvement, but on that track that that slope of improvement, there is a lot of peaks and valleys of, hey, we're kind of wiping it out, we're knocking it, backing its heels, and then you hopefully knock it completely out because what happens, like I said, if there's ten five percent remaining, that can kind of be a super bug and that gets really tough to deal with.
- 42:22Balance, equilibrium, secret to life, really.
- 42:28Mm-hmm.
- 42:28Not just this journey, but day-to-day lives for, for all of us.
- 42:34Mike Neeson, I can't thank you enough for coming in studio today and sharing your journey and.
- 42:41I, I just wanna say thanks for having me.
- 42:42I enjoy, you know, um, sharing my story and, and trying to give people, um, some inspiration you know, when, when things look tough, right?
- 42:51You, you can get through it.
- 42:52Like I said, people always will say, I couldn't do what you do, and I tell'em Yeah, yeah, you could.
- 42:59Absolutely tremendous.
- 43:00Mike Neeson, thank you again.
- 43:01This has been another episode of Minnesota Masonic Histories and Mysteries.