Episode Transcript
[00:00:01] Hi everyone, this is Dawn Klemm and you are on my podcast, Milkweed and Monarchs.
[00:00:08] Today I'm going to share the story of Matt.
[00:00:12] And I want to just warn you up front, it is a sad story, but it is a story that needs to be told.
[00:00:21] And I think anyone who has worked in the health care industry or has been ill or dealt with an ill family member is going to appreciate the story.
[00:00:36] So I hope you enjoy it.
[00:00:41] First of all, I just wanted to talk a little bit about growing up.
[00:00:47] If you've heard any of my podcasts, then you know my grandparents are owned an 80 acre soybean farm just across the Michigan border into northern Ohio.
[00:01:00] And she they had seven children.
[00:01:05] So all of us spent every holiday down there. There were like 19 cousins. So it was a lot of fun. I mean, that farmhouse was so tiny. When I look back on it, I don't know how we all crammed in there, but we always had a wonderful time.
[00:01:23] In the fall, it was hunting season.
[00:01:28] So I think November 15th is actually when hunting season starts in Michigan. And Thanksgiving is usually about 10 days after that.
[00:01:37] So every year at Thanksgiving, all of the uncles and the grandsons would get together and go hunting before we had the turkey dinner or sometimes they would go after the turkey dinner.
[00:01:54] And everybody was always so excited to see if they got anything. It doesn't seem like they ever got anything down there, which is kind of funny because a lot of times in later years, hunters would come and ask my grandma if they could hunt on the farm and they would bring her little thank you gifts for allowing them to hunt there. And I think they did get deer back then.
[00:02:23] So the most I ever remember them getting were woodchucks. And I don't think the woodchucks counted for anything. But my grandma hated the woodchucks because they were always in her garden eating the vegetables. So she didn't mind if they got a couple of woodchucks, even though they were not in season.
[00:02:46] There's no such season for woodchuck hunting.
[00:02:52] So anyway, I've been around hunters my whole life. It's very common in our hometown of Hillsdale. And like I said, in my family there were a lot of hunters and it was a big deal and it was kind of exciting. Everyone was excited when someone you knew was able to get a deer or a buck especially.
[00:03:15] And growing up, that was just a way of life.
[00:03:21] Flash forward.
[00:03:23] I'm now a nurse navigator working in the brain tumor clinic in Grand Rapids.
[00:03:31] And one day a post operative patient came in with his Wife, of course, I look on the chart right away just to see the date of birth. You want to know the age of the patient, it definitely dictates how you're going to communicate to that patient. Because I had patients in their early 20s and patients in their late 70s, sometimes 80s, but not that often.
[00:04:03] And so when I looked at the age of this patient, I. I realized he was exactly the same age as me. I think his birthday was six months before me.
[00:04:14] And when I went into the room, he and his wife, I got introduced to his wife, Kim, and they. She was the same age as us, too.
[00:04:27] So I felt right away like we had a lot in common. I don't know if it was just because they were the same age as me, but it felt like it was easier to talk to them because they were my age.
[00:04:43] So he had been diagnosed through surgery the typical way with a grade four brain tumor, which is a terminal diagnosis.
[00:04:54] And that first appointment he gets the bad news that, you know, this is not good.
[00:05:01] They always say that patients can live between 18 to 24 months with a terminal brain tumor.
[00:05:11] And so that's the kind of news that he was going to get that day.
[00:05:17] And of course I'm, you know, apprehensive about it, but by the time I make it in there, he's already gotten his diagnosis.
[00:05:29] And I'm in there to introduce myself as the nurse navigator, explain my role, tell him how I'll be following him, tell him that he'll be coming back for chemotherapy education, and that I will follow him through his six weeks of radiation.
[00:05:54] So we talked through the whole thing. His wife had a few questions.
[00:05:59] He was pretty quiet, which is typical, too. I mean, he was probably four days post op at the most. So he had had his surgery four days ago.
[00:06:10] And they're just trying to process, if you can imagine, they. They've had someone doing major surgery on their brain to remove a tumor. So he was pretty quiet.
[00:06:25] And I think the two of them were just trying to compreh terminal illness, because that is not an easy thing to hear at your first appointment in the office.
[00:06:42] Now, that being said, they will tell them. The surgeon is very good about telling them when they're in the hospital after they've removed the tumor. We don't have the pathology back yet, but this tumor doesn't look good for you.
[00:07:01] So they have somewhat of an understanding that the tumor is not great, going to be a great diagnosis, but they have to wait for the final pathology before they can really tell them exactly what's Going on. And that's why they end up coming into the office, because that is where he actually gives them the final diagnosis, the surgeon.
[00:07:27] And then I can go in and introduce myself. And they understand from that point on, they're going to have somebody that will be closely monitoring them.
[00:07:41] They give them the first month off from treatment after surgery because it takes a good four weeks for that surgery. Surgery, the surgical incision to heal and the. Where the brain tumor was removed internally.
[00:07:58] So four weeks post operative is usually when they come back. And I would go over the chemotherapy with them. Chemotherapy for a brain tumor is not intravenous. It's a pill.
[00:08:15] So I talk to them about the pillow, the side effects, when they need to take it.
[00:08:22] There is an oncology consortium that creates standards of practice for specific cancer diagnoses, and that is for all practices across the United States. So they dictate the standards of care for these patients.
[00:08:49] So I sit down with them, I tell them how I'm going to order the medication and that it should be there within seven to 10 days and that radiation orders have already been sent in and that they should be getting an appointment for. For a consultation.
[00:09:17] And then they will schedule their radiation. The first appointment, they have to map out the brain and know exactly where that beam is going to be hitting where the brain tumor was.
[00:09:33] So the first appointment, they have to have a face mask over them because they're protecting your face and your eyes. And then they map the patient out so that when they come, the radiation goes to the same exact spot every single day.
[00:09:52] So there's a lot of information that they get at that post operative appointment.
[00:09:58] And then we send them on their way for four weeks to heal.
[00:10:03] Usually I would not hear from the patient and the family Unless there was some kind of issue going on the this appointment.
[00:10:17] They were both pretty quiet, I think, you know, they're just trying to process the information.
[00:10:25] And it was probably about a week later that his wife called just to give me an update on how he was doing and to talk to me about is he going to be able to go hunting.
[00:10:42] So that's not a typical question that you would get right out of the gate. But apparently her husband was an avid outdoorsman. So he was a hunter and a fisherman, and they spent a lot of time outdoors.
[00:10:58] He was newly retired, and they had a trip planned to the west, where they knew they were going to be able to get bigger game like elk out there. And he had been quite excited about that. And so he had spurred her on to call Me, because he didn't want anything to jeopardize the trip that they were going to be taking later on. And so I had to talk to her for quite some time just to let her know.
[00:11:34] So much depends on how well he does through his first part of treatment.
[00:11:39] But I will say that when he gets through the first six weeks, he does have a break in treatment, and then he'll start taking his oral chemotherapy on a monthly basis. So we do encourage people to. To travel during that time before they're kind of tied down into sticking around and having their labs drawn and us making sure that everything is going okay.
[00:12:14] So in between his radiation and chemo, and then his just being assigned to take chemo, there's four weeks off again. And so he could potentially go on a hunting trip then.
[00:12:32] I don't know if they had the dates already planned out at that time. It doesn't seem to me like they did.
[00:12:41] But just being able to give her this information definitely took some weight off from her shoulders, because she felt like they had something to look forward to, something to plan for, and she knew that would help him get through this initial stage of diagnosis and treatment.
[00:13:02] And I really thought it was a good plan. And I told her, yes, let's just keep this in mind. I think it's a good idea. But we definitely want to make sure that everything is going okay for him before we give the final okay for him to go hunting. You know, that's a big deal, right?
[00:13:22] So four weeks pass, he starts his chemo and radiation. I'm seeing him radiation once a week, week down there. Sometimes I would go twice a week. His wife always came with them. He seemed to be doing well. There were no deficits that I could see. He was walking, talking.
[00:13:44] Everything was going okay. He seemed to go through the first six weeks without any issue whatsoever at all.
[00:13:55] And you could tell that they were breathing a sigh of relief that things were on track and he was going to be able to go on this vacation in the meantime. I did talk to the surgeon about it just to get his blessing. He didn't think there was any reason why he shouldn't be able to go hunting. And believe me, after being around all of my cousins and uncles, I know what a big deal hunting is for a hunter.
[00:14:28] There's no doubt they don't want to be held back. And this was such a big opportunity for him to be able to go and hunt big game.
[00:14:39] So all seemed well. His wife was gonna be there. They were also gonna have a group of Men and women going. So it was like a big party of everyone going out there and they had cabins and they were all very, very it. And we gave him the blessing the surgeon did for him to go.
[00:15:10] So he goes out there and everything's fine. I don't think he got anything, but they saw a lot.
[00:15:16] And it. When he came back to the office for his follow up appointment to be able to start just his oral chemotherapy, he was so excited.
[00:15:31] You could just tell that this was something that he had been looking forward to for a long time.
[00:15:38] And the trip had been completely uneventful. And everyone that had gone had been so happy.
[00:15:46] And so I was happy too, because he got to do something that he really wanted to do.
[00:15:53] It's kind of like when you talk about the Make a Wish foundation for kids that are diagnosed with cancer, and you get to make that one wish and do something that you've always really wanted to do.
[00:16:07] So that's how it felt to me. And I think that's how he felt too. He was giddy from being able to do something that they had talked about for quite a long time.
[00:16:19] He talked about how beautiful the west was and how much they had enjoyed being there and just being in nature.
[00:16:31] And so it was, it was really, really a great, great thing.
[00:16:38] So he starts in his, what we called maintenance chemo because he's had his initial chemo and radiation.
[00:16:48] Now he goes on maintenance chemo and he takes it once a month.
[00:16:54] So it's five days on and I think it's five days on and a month off. Five days on, a month off, that kind of thing. And we're drawing labs in between to make sure that he's not having any issues with lab counts because it's still chemotherapy. So it can still impact your white blood cell count, which is the count that fights off infection.
[00:17:21] And sometimes it'll affect the red blood cell count too.
[00:17:26] Less likely with this chemotherapy. But there are patients that don't do well on treatment and end up having to have a blood transfusion. But neither of these were the case with him.
[00:17:41] He seemed to be tolerating the treatment really well.
[00:17:45] So we had gone through a couple of months of the maintenance chemotherapy and it felt like he was right on track from what we would normally see in these patients.
[00:17:58] And it was, you know, so we're talking maybe four or five months.
[00:18:05] One day I'm in the office and I get a phone call from his wife saying that she's noticed a change in his speech pattern.
[00:18:15] Almost as if he had Had a stroke. He could talk sometimes, and sometimes he couldn't talk.
[00:18:22] So I talked to the surgeon about it, and he had me get an MRI on the patient, get the patient scheduled. He saw him in the office and talked to him before the mri. And then we made an appointment for him to come back after we had the results of the MRI so he could talk about next steps.
[00:18:49] The concern was that the tumor had started to regrow, and so, of course, everyone was on edge about that, especially the patient.
[00:19:05] So he had seen him on Monday, and Friday was his appointment, and we were waiting for the results of the MRI on Thursday afternoon that same week.
[00:19:24] And it was one of those dark, dreary days.
[00:19:29] And I remember that vividly thinking, oh, what a lousy day. You know, I think it had been raining off and on. It was cold.
[00:19:39] It was just a dark day.
[00:19:42] And the phone rang. My phone rang.
[00:19:46] And I answered the phone, and it was not a familiar voice.
[00:19:51] She said, is this dawn the brain tumor navigator? And I said, yes, it is. I confirmed it, although I had already said it. She said, this is Mrs. So and so, and I'm calling to cancel an appointment I for Matthew scheduled on Friday.
[00:20:09] And I remember thinking right away, that was like a red alert to me.
[00:20:14] What do you mean she's canceling it? I knew she. He had problems. Why isn't this his wife?
[00:20:21] What is going on here?
[00:20:24] She said, yes, we just want to cancel the appointment.
[00:20:29] So I said, okay, kind of tentatively.
[00:20:33] And then I hear his wife's voice in the background. And she says to the woman, is that Dawn?
[00:20:41] And she said, yes, it's Dawn. And she said, I'll talk to her.
[00:20:46] So she hands over the phone to her, and she says, hi, Dawn. It's Kim. I said, kim, what's going on? Is everything okay? She says, no, it's really not.
[00:20:59] I wanted to let you know that Matthew killed himself.
[00:21:05] I'm like, what?
[00:21:08] What?
[00:21:10] I mean, the whole world stopped right then for me.
[00:21:15] She said, I was in the kitchen. I had the radio on.
[00:21:19] He had been in the back of the house. I didn't think too much of it. Our bedroom was back there. I thought he was taking a nap.
[00:21:28] I heard a loud bang.
[00:21:30] She said, I thought it was the water heater had exploded.
[00:21:35] And she said, I ran to the back of the house to find out, thinking that I was gonna have to call somebody to come and take care of it.
[00:21:47] And there he was.
[00:21:49] He had shot himself.
[00:21:52] And I was like, oh, my God.
[00:21:56] I am so, so sorry.
[00:22:01] I am just so sorry.
[00:22:04] She said, I don't want you to think badly of him. Can you imagine that this is what she's telling me when I should be comforting her?
[00:22:16] She said, I don't want you to think badly of him.
[00:22:21] He's been around guns his whole life.
[00:22:25] He has been a hunter his whole life.
[00:22:29] This was not a far stretch for him to shoot himself. She says he wouldn't think anything of it.
[00:22:40] He knew that the brain tumor was coming back and he did not want to live out his life not being able to communicate to anyone, having his family watch him die a slow death because we don't know how long it would take before he actually ended up dying.
[00:23:07] And honestly, I was so stunned by the phone call I was in, I was shocked.
[00:23:17] I kept saying to her, I am so, so sad and I am so, so sorry.
[00:23:24] Is there anything, anything at all that I can do for you right now to help you?
[00:23:33] She said, no, but I am so glad I got the time to talk to you so that you would understand and you would not think badly about him.
[00:23:47] I said I could never think badly about him.
[00:23:51] And as a matter of fact, I think about him almost like one of my cousins. He just reminds me of someone who would have been in my family.
[00:24:02] I'm sad that he had a brain tumor.
[00:24:07] I'm sad that he thought that this was the way to end his life.
[00:24:12] But I completely understand.
[00:24:16] And I want you to call me if there's anything else that I can possibly do for you and your family.
[00:24:25] Please.
[00:24:26] It would be my pleasure to help you in any way that I can.
[00:24:32] And she said, thank you.
[00:24:35] He appreciated you so much and so do I.
[00:24:40] And she hung up the phone and I was like, oh, my word.
[00:24:46] Well, Thursday afternoon, the surgeon was in surgery.
[00:24:52] I had to let him know right away because I just couldn't deal with it myself.
[00:24:58] So I texted him in the or and I didn't really care.
[00:25:02] I texted him and told him the whole story over a text.
[00:25:06] This terrible when I think about it, because he's right in the middle of surgery.
[00:25:12] But he did text me back and pardon my English, but I'll never forget this either, because I know he felt the same way I did. And he texted me back, oh, my word, that is absolutely horrible.
[00:25:36] And that is how we both felt.
[00:25:39] I didn't know really if I was going to be able to make it through the rest of clinic that day.
[00:25:45] They called me around 2 o' clock in the afternoon and I worked until 5 usually.
[00:25:51] And I'm thinking, my God, I don't think. I can't concentrate. I'm so worked up over this.
[00:25:59] Well, 20 minutes had passed. I'm trying to regroup.
[00:26:04] I can only imagine. I'm the navigator. What the surgeon was thinking, you can imagine, right.
[00:26:12] And in the meantime, my phone rings again, and I'm like, oh, what else could this possibly be?
[00:26:21] What else could possibly happen today?
[00:26:25] And I answer the phone and it's the pathologist on the phone.
[00:26:30] And she says, hey, Don, I'm down here in the emergency room, and it looks like we have one of your patients.
[00:26:40] He didn't make it.
[00:26:42] And I said, is it Matthew? So and so. And she says, yes. How did you know? I said, his wife called to tell me. She's like, you've got to be kidding me. She must have called you right after it happened.
[00:27:00] Said, I don't know.
[00:27:01] She said she had to because we just got him into the emergency room. I said, I don't know, I don't know.
[00:27:11] She says, that should tell you something about the navigator role, Dawn.
[00:27:18] And I said, yeah, it really kind of does.
[00:27:23] And we hung up and I left the clinic. Then I just could not work for the rest of the day.
[00:27:34] But I remember driving home thinking to myself, you know, it is such an honor and a privilege.
[00:27:45] Excuse me.
[00:27:47] To be a nurse navigator for patients.
[00:27:53] You are helping them through some of the worst times in their life. We're the eyes and ears for these patients. We're the education for these patients. We're the ones that dots all the I's and crosses all the T's. We make sure all the physicians are all on board together.
[00:28:14] We talk to the family members, we talk to anybody that they want us to talk to.
[00:28:21] And to be that intimate with a patient that you are literally the first person the wife calls when your husband has killed himself.
[00:28:36] Wow.
[00:28:38] I'll tell you, that one call changed me, changed me, changed the way that I looked at at my practice.
[00:28:49] And although I had always tried so hard to meet every patient need, I think I became even more devoted after that.
[00:29:04] It was an event that actually changed me.
[00:29:16] I know this is a lot to hear, but I'm hoping that this is a story that will impact you in the way that it impacted me.
[00:29:31] Because these interpersonal connections that we make with people, whether it's in your doctor's office, whether it's your friend group, whether it's your family, that's really what life is all about, isn't it?
[00:29:45] Being able to be there for people, that's just so much more important.
[00:29:54] And that is a huge lesson that I thought about for a long time after that.
[00:30:08] Thank you for listening to my story today.
[00:30:12] I know it was not an easy one, but I hope it makes you think.
[00:30:19] The webpage is going to be updated next week or the week after. We have an appointment next week with our marketing person and we are going to finalize everything. So I'm thinking it'll probably be the following week that it gets updated.
[00:30:37] I am going to be taking a break, but I will set tell this on reels. I'm gonna be going on vacation, so I won't be posting a podcast for a couple weeks. This one won't even be impacted by it.
[00:30:57] So I don't know why I'm telling you because I'm still thinking about the story probably.
[00:31:02] But anyhow, the new web page will go up, we will have my bio on, and then I'm going to be starting to interview people. I have my first person coming and I have a couple others that I'm going to be interviewing while I'm on vacation. So I'm really looking forward to all of this.
[00:31:22] And then you, you will see the bio of the person that's talking. You'll see my bio underneath it. There'll be a new way of contacting me at the bottom and we'll have that whole section filled out. So we're finally moving forward a little bit and I think it'll be easier for you. I've been on a learning curve with all of you at the same time and I'm finally just after a year getting the swing of things. So thank you all for hanging in there with me and thank you for continuing to listen to my podcast. I really appreciate all of you.
[00:32:00] If you have a question.
[00:32:02] Excuse me? A question, or you would like to tell a story.
[00:32:07] Dawn dash a w nilkmanmilk m o n.com all one word. And if I get a message I will definitely give you a shout out somehow and we will connect and I can even tape you over the phone if you want to do it that way. Can have a couple of conversations until the next time.
