Episode Transcript
[00:00:01] Hi, everyone. This is Dawn Klemm, and you are on my podcast, Milkweed and Monarchs.
[00:00:07] A quick reminder before I get started today, I'd like to let you know that my memoir, The View from Five Feet and Under, is now available on Amazon.com Simply type the View from Five Feet and Under into the Amazon search bar and the book will pop up.
[00:00:27] Thank you for your support. And now on to today's episode.
[00:00:32] Hi, everyone. This is Dawn Klemm, and you are on my podcast, Milkweed and Monarchs.
[00:00:40] Today I'm going to share another patient story with you. Actually, it's more of a story about the spouse than it is actually about the patient.
[00:00:53] And it's a story that comes full circle. So it's sad, but it's not sad. It actually comes full circle. And so I think you might find it uplifting. I hope you do. Anyway, so being the only brain tumor navigator in the clinic had its challenges. Let me just say that right up front, you can imagine if you get diagnosed with a terminal illness, how much angst that provokes in a family, especially for the spouse.
[00:01:31] I mean, I. I can envision some of the spouses that I work with just watching their spouse sleep to make sure that nothing is going to go wrong. You know, that kind of thing, because you have been told that your spouse is going to die from this disease, and you want to make sure that they live as long as they can. And so you have anxiety, wondering at every moment when the shoe is going to drop.
[00:02:04] And I spent a lot of time talking to the spouses of my patients to. To try and get them to come to a reckoning of the event so that they would be able to deal with the inevitable, which is not easy.
[00:02:24] But usually when the patient was first diagnosed and they would come to the clinic and we would have a team meeting.
[00:02:33] So first the surgeon would go in, then the oncologist would go in, and then I would go in with the PA and. And I would ultimately end up doing chemotherapy education with them, talk about side effects.
[00:02:49] The PA was there to answer any kind of questions that they might have. And she would go over things, too, like sexuality, because people always wanted to know. I think you want to be more intimate with your partner during that time because you know that they're not going to be with you for the rest of your life, and you want to feel close to them at that time. So she would talk to him about the side effects of chemotherapy and how it would impact you with your sexual activity.
[00:03:26] And she's like, dawn, do you want to teach us? I go, no, I'd rather talk about constipation. I can handle pooping, but I don't want to talk to them about sex. So it was kind of like a joke in the clinic because I was like, no way am I talking to him about sex.
[00:03:45] But we would go through that first meeting, we get everything's straightened out with them, make a game plan with them, and, you know, I'm sure they all went home, they had a folder, everything was spelled out.
[00:04:02] But you're. You're not completely concentrating. You're still trying to get through the cloud of is this really happening to me?
[00:04:14] And.
[00:04:15] And I knew that was what was going on many times, so I would always give them my business card. Here's my phone number.
[00:04:23] Go home. If you have any questions or please reach out to me. I'm here Monday through Friday, more than happy to get back to you.
[00:04:33] If I don't answer right away, I might be in with another patient. I might be at radiation, but I will call you back. So that was always my little mantra.
[00:04:46] Well, the problem is that they wanted me to be available 24 hours a day.
[00:04:53] And if I did not answer the phone right away or within the next 24 hours, they would call the manager and suggest that I be fired. Which is so. I mean, it's. It's not funny. But it is kind of funny because you're not even going to give me 24 hours.
[00:05:15] I think, you know, you have to cut them some slack. They. This is an anxiety provoking situation.
[00:05:23] And I do get it most of the time. Once I'd been fired by the patient, which they couldn't really fire me, but they got it off their chest when they called my manager.
[00:05:37] And my manager would say, she just happens to be out for this afternoon, only she'll be back tomorrow. She couldn't get in because of the weather, you know, any sort of thing. I was hardly ever sick. I was always there, believe me, more than I wanted to be. But there were times, if I went on vacation, I always put a voice message on my answering machine. So they knew that I would be out of the office and who to call. I was very responsible that way.
[00:06:07] So it kind of cracked me up. When I would get fired, you know, the manager would come out and go, well, you got fired again today.
[00:06:15] Well, why was she mad? Well, she wants to be part of a team. I go, she is part of a team. But I was not in the office at the time she called me. Do I get a chance to call her back, she says, of course.
[00:06:28] So one of the patient spouses, his wife, the patient was the husband.
[00:06:36] And the wife who fired me became a very good advocate for her husband.
[00:06:46] And we ended up working out a system after she had tried to get me fired, of course.
[00:06:53] But we did work out a system.
[00:06:55] She was an executive, and so she had to be up early in the morning and get to work early in the morning.
[00:07:04] And I wasn't even at work when she was on her way to work. And so she wanted to have a system where she would be able to call me and, and even if I couldn't talk to her right away, I would get her message and be able to get back to her.
[00:07:23] So I go, there's no system for that. All you have to do is call. My, my voicemail is always ready for a message.
[00:07:32] So we, we talked about it for a long time. She would always get up at 4 o' clock in the morning and 4 o' clock in the morning every single day.
[00:07:42] For the rest of the time that I took care of her husband, she called me and left me a message.
[00:07:50] There might be a message about his medication, there might be a message about his symptoms, there might be a message about how she was feeling.
[00:07:59] But every morning I could count on coming to work and having a message from the spouse when they did come into the office for office visits. She was calm, though, and she always felt relieved because I would call back and either leave her a message or talk to her directly and answer any of her questions.
[00:08:25] Once they knew that they would hear from me and that they didn't have to wait very long, they did calm down, and she definitely calmed down too.
[00:08:39] She got to the point where she knew she was always going to hear from me. She felt completely comfortable talking into my voice message and leaving me a message.
[00:08:51] And we had our system worked out really well. It was going good as far as, you know, getting a hold of me.
[00:09:02] He was starting to. He got through the first part of chemo and radiation. So he made it through the first six weeks and it was going okay.
[00:09:14] They have the, a break in between three months before they start what we call their maintenance phase.
[00:09:22] And I think during that time he was talking to her a lot about, well, this isn't even worth it.
[00:09:30] This isn't even worth it. We know what the end result is going to be. I'm exhausted.
[00:09:36] I don't know how long I want to be able to do this. I just don't know how I feel about it.
[00:09:44] And so, and I completely understand that actually.
[00:09:48] So they would come in, when they would came back for, to start on maintenance chemo, they had a lot of questions about longevity.
[00:09:59] Is this really worth it?
[00:10:02] You know, well, when you come back for maintenance chemo, you have a follow up mri.
[00:10:10] So you've gone through surgery, you've gone through your first part of treatment, you have three months off. And during that, three months off, off, that's kind of a period for us to see how he has, he or she has responded. And if we're going to continue on the route to maintenance chemo.
[00:10:33] And 99% of the patients would continue on the maintenance dose of chemo.
[00:10:42] So he had had his MRI and the MRI was pretty much status quo. There was no new growth or anything like that.
[00:10:52] But the patient was depressed, majorly depressed. Why wouldn't you be?
[00:10:59] He just did not know if this was really the road that he wanted to go down.
[00:11:07] And she kind of understood what he was, was talking about.
[00:11:15] She didn't know if she could actually handle going down that road with him.
[00:11:22] Which is, you know, when, when you face a life changing event like this, you really have to look at yourself and know yourself to understand what you're capable of dealing with and what you're not capable of.
[00:11:43] And I know that sounds kind of crazy, like why wouldn't you continue to fight? Some people aren't fighters especially you're fighting, but you know you're gonna die in the end. The average patient lives 18 months with a brain tumor before they pass.
[00:12:01] Now we've had pretty good results and I've seen patients that have lived five years with it. Okay, but that's not, not as often.
[00:12:10] The problem is you don't know if you're going to be one of those patients that lives five years. Right. You have no idea. There's where the problem comes in.
[00:12:20] So most of the patients, you know, 90% of them definitely wanted to continue to go forward.
[00:12:32] At least 50% of them wanted to go forward with standard treatment. And at least 35% was going to start looking to see if there were other options out there or different doctors. That's very common too.
[00:12:46] You know, you've got a terminal diagnosis. Maybe the people in Grand Rapids don't know what the people in California know. Right? That's very, very common.
[00:12:56] There's nothing wrong with them pursuing a second opinion. Why wouldn't you? We're talking about your life here. So no judgment at all.
[00:13:06] And matter of fact, a lot of times I would send all the documents to a lot of people went to Mayo Clinic. That was very common. Cleveland Clinic. That was very common.
[00:13:18] You know, the places that have big reputations.
[00:13:24] And so.
[00:13:25] And I had no problem sending out the information to make sure that everything made it to the next facility.
[00:13:34] But with him, he didn't even want to go forward with treatment.
[00:13:40] He really did not think he was up for going through treatment and then not living in the end of all of it anyway, what was the point is what he said.
[00:13:57] I do understand that. I actually do understand it.
[00:14:03] But as a spouse, you can imagine that's really hard to hear because you're. You want your. Your spouse to hang in there for as long as they can, and you're letting go of them before you feel like you're really ready. But this is really about the patient's experience.
[00:14:20] So, I mean, I give both of these people huge amount of kudos because I don't know how I would handle it myself, Especially now that I've been an oncology nurse. Would I be like, okay, forget it. I'm not going through treatment. I could see myself doing that, actually.
[00:14:40] So I did understand him questioning things.
[00:14:45] But he did finally agree to start on the maintenance chemo, and it's just pills, and he take it one week out of the month.
[00:14:56] So he thought he could. He's gonna try it and just see how it goes. But he was wavering. He was definitely wavering about it.
[00:15:06] He got into about the third month of it, and he's like, this is not for me, really.
[00:15:14] I don't feel like my level of functioning is where I would want it to be.
[00:15:21] And he could feel himself getting weaker. Some of that is the chemotherapy, but some of it is just because the disease is debilitating.
[00:15:32] And like I said, he had some depression. Why wouldn't you?
[00:15:36] So he finally said, I'm not going to go any further with treatment. I don't want to go any further with treatment at all.
[00:15:46] And.
[00:15:47] And I was talking to his wife. Are you. You know, how do you feel about this? She goes, you know, I'm sad, but I want to honor his wishes. This is what he wants to do.
[00:15:58] And I feel like it's the right thing for him.
[00:16:04] And I'm, you know, I still have a life. I'm still working. I've got this executive position, so I'm gonna still keep moving forward in my own life.
[00:16:19] So we made the decision with him to stop all the treatment.
[00:16:24] It was kind of funny, too, because even after he stopped the treatment and he would have symptom issues she would still call me at 4 o' clock in the morning. Right. I would still get the messages on my answering machine from her and I would still call her back and tell her my thoughts or tell her that I had spoken with the doctor and this is what the doctor's thinking. And so I still remained in contact with her during the whole time he was off from active treatment.
[00:17:00] I can't remember exactly how long it was, but it does not feel like it was that long. I feel like it might have been six weeks.
[00:17:10] I really don't think it was two months.
[00:17:14] And then he did pass away peacefully at home and she had called my phone and left me a message pertaining to that.
[00:17:31] So I was like, oh, this is sad. I'm not going to have any more 4 o' clock in the morning phone calls anymore. Right. I mean, I had gotten used to her, really.
[00:17:42] And, you know, I just felt so bad about it, but I completely understood.
[00:17:49] And you know, that's just another chapter in the clinic.
[00:17:54] And there's going to be somebody else now that I'm going to have to take care of. That's. That was always my next.
[00:18:03] Always moving forward with the next patient. That's just how it has to be.
[00:18:09] So probably two weeks had passed and I'm sitting at my desk and in comes the most beautiful bouquet of flowers. Of course, you know, I'm gonna over exaggerate that, but I'm not kidding you. They were really beautiful. They had snapdragons in them and snapdragons to me always look like a little velvet on them. So they were just beautiful. The colors were beautiful.
[00:18:39] It was leaning towards the fall. So where there were Burgundies in there. And it was just a beautiful bouquet of flowers.
[00:18:46] And I'm thinking, who would be sending me flowers? You know what, my birthday is coming up. Maybe my husband sent flowers. Right? You're always trying to figure out who's sending you flowers at work. It doesn't happen that often. So when it did, it was like a big moment and everybody's like, oh, what's going on?
[00:19:03] Why'd you get flowers today? You know? Well, I opened the card up and sure enough, it's from his wife.
[00:19:13] His wife sent me the most beautiful bouquet of flowers and probably the nicest card that I had gotten in a very long time.
[00:19:24] And how she respected me so much and she's sorry that she tried to have me fired, which I thought was so funny, and that she knows she couldn't have gotten through this whole thing if it hadn't been for me, which of course is not true. I mean, I was part of it, but I'm part of a team. We need the whole team.
[00:19:51] I'm just the front man of the team, you know, the talker. So that helps. But the rest of the team is the important part. I'm the one that keeps things moving because I was the talker, so.
[00:20:05] But I appreciated getting those flowers. Oh, yes, I did. I really appreciated them.
[00:20:12] And I thought about her so many times after that because I no longer would get my 4am messages.
[00:20:21] So it was kind of sad to see that go away.
[00:20:28] So fast forward now, and it's probably been a year and a half, and I have retired.
[00:20:37] I have retired since this all happened.
[00:20:43] And we have a walking trail where I live.
[00:20:47] And I started taking long walks on that trail because I was healing myself from that job. I love the job, but I also loved all the people that I cared for. And so it was a loss.
[00:21:02] There was always a loss happening to someone's family and to someone that I cared about.
[00:21:10] I know you're not supposed to get that involved, but I truly, really felt like they were part of my family.
[00:21:17] So I. When I retired, I started walking this path in my town and I was working through, yeah, know, my own grieving process of not going to work anymore, going to get healthy now.
[00:21:35] I'm not going to be helping anyone else like I was. I'm going to help myself now. You know, I'm trying to work through this whole thing.
[00:21:45] And I walk into town and there on the path in front of me was this patient's spouse, and she was with another man.
[00:22:00] And I could tell from their conversation that they had just met each other and that they were talking about things that they liked, things that they didn't like. You know, that first initial couple conversations you have with someone when you're first starting to date them.
[00:22:20] So it was very obvious that that's where she was in this process.
[00:22:26] And I was like, ah.
[00:22:28] And then I'm like, I don't know, should I say something to her or shouldn't I? But I really felt compelled to say something to her. I almost felt like a little tap on my shoulder from her husband who was gone. I felt like pushing me a little bit, like, go ahead, go ahead.
[00:22:45] So. So I said her name softly, and she turned around and she looked at me and I said, I don't know if you remember me or not.
[00:22:56] I am the person that took care of your previous husband. She's like, oh, my gosh. Dawn. I cannot believe I just met you out here. I cannot believe it.
[00:23:08] And I said, I'm so happy to see you.
[00:23:12] I'm so happy on so many levels. I missed your 4am phone calls, number one.
[00:23:20] And number two, I'm so happy to see what you're doing today that gives me great joy.
[00:23:29] I really appreciated those beautiful flowers that you gave me. And I wish you all the happiness in the world.
[00:23:38] And we both gave each other a big, big hug.
[00:23:43] And then we both went on our merry ways.
[00:23:47] And I thought, wow, that was so profound. What are the chances of that really happening, right? What are the chances?
[00:24:01] But it was a great moment, a full circle moment, and I'm so glad I got to experience it.
[00:24:15] That's the end of my story for today.
[00:24:18] I hope you enjoyed it.
[00:24:24] Until the next time.
