Episode Transcript
[00:00:00] Hi, everyone. This is Dawn Klemm, and you are on my podcast, Milkweed and Monarchs.
[00:00:07] Today, I'll be telling you another patient story of a young couple that I treated in the brain tumor clinic.
[00:00:17] But before I get started on their story, I want to just talk about the five stages of death and dying.
[00:00:27] So terminal brain cancer can impact any age.
[00:00:32] If any of you have seen the commercials on St. Jude's then you see children, little children, even babies that are born with neuroblastoma, which is a grade four brain tumor, the highest level, the worst end of the spectrum of brain tumors.
[00:00:53] And that means that you're not going to have a long life. It's a terminal diagnosis.
[00:01:00] In our clinic, we treated patients age 21 up through and well into their 80s, patients that had terminal brain cancer.
[00:01:13] One of the things that I saw happen frequently, and there is no judgment here, believe me, is that when the patient, male or female, got diagnosed with a terminal illness, and we went over all of the treatment plan with them for brain tumors, we also discussed life expectancy, which is usually around 18 months, maybe longer. We've had patients that lived quite a bit longer, and we've had patients that lived less than 18 months. So 18 months is about the average for a terminal brain cancer.
[00:01:55] But what the patient and the family experiences right away are the five stages of death and dying. And that was created by Elizabeth Kubler Ross.
[00:02:07] If you've been listening to any of my podcasts, then you may have learned that I was first introduced to the five stages of death and dying when I was a corpsman in the Navy and I was 19. I had no real understanding of what death looked like at that point.
[00:02:28] And so they put me through training because, of course, we treated all medical patients on that unit, and that included patients with terminal cancer, not necessarily brain tumors.
[00:02:41] So the five stages of death and dying are listed as number one, denial.
[00:02:50] So when you get the diagnosis, you're in an initial state of shock and disbelief, often a temporary coping mechanism to absorb the overwhelming news.
[00:03:05] So you can imagine somebody just told you you have a terminal brain cancer. Life expectancy is 18 months.
[00:03:12] Denial is the first thing. You're like, no, that can't possibly be happening to me.
[00:03:18] The second stage is anger.
[00:03:20] And of course, feelings of anger may arise. It doesn't always arise, or from a medical point of view, maybe we don't see a patient's anger. Maybe the anger is elicited when they're at home with their loved ones and they feel free to verbalize their feelings of Frustration, especially if it's somebody you know in their 20s or 30s, they're feeling like we haven't, we're just barely getting started to live our life. How can this be happening? And they're angry about it. Completely understandable.
[00:03:54] The third step is bargaining.
[00:03:56] It's often an attempt to postpone the inevitable.
[00:04:00] Often involving if only statements or promises in exchange for more timing.
[00:04:07] You know, I can envision if something like this were to happen to me, I can predict that I would be having a direct conversation with God. What if I did this, God? Or I'm so sorry I didn't do this, God. Next time I'm going to do it better. Please just give me more time. I can just hear that with myself.
[00:04:27] So I can only imagine how anybody else would, would feel in that situation.
[00:04:34] The fourth stage is depression.
[00:04:37] Of course they're going to be depressed.
[00:04:40] That goes without even saying.
[00:04:42] But they go through the first three usually before they get to the point of depression, because depression is going.
[00:04:51] But I have so much more life to live.
[00:04:53] But I'm going to be leaving my children and my spouse behind. But I finally got that great job that I wanted. And know they think about all of that and they are definitely depressed. And I can't imagine why they would not be depressed. And then the final stage is acceptance.
[00:05:12] They come to a sense of peace or quiet understanding of the situation, acknowledging that the inevitable death is going to come.
[00:05:25] So you can imagine that first post operative appointment in our clinic when they are given that news sets off a firestorm. Of these five stages.
[00:05:39] They usually go in that order, but sometimes you experience two or three of those same emotions at the same time.
[00:05:49] It really is just a devastating diagnosis to the patient and their family or loved ones.
[00:06:00] One of the things that I saw quite often was the bargaining one.
[00:06:07] And I think it's denial and bargaining at the same time.
[00:06:12] So the patients began to believe in their mind that our health care system had it wrong. Our doctors, well, they aren't the best doctors that they could be taking care of them, right?
[00:06:29] So they start to pursue looking for other doctors.
[00:06:34] They go everywhere looking for another doctor. Right.
[00:06:40] And a lot of times that may even bring them outside of our country.
[00:06:46] Many times I have seen over the years, many of our patients would go to Mexico and there was a particular physician down there that they would all go to see and they would have MRIs down there as well. And then that doctor would give them various kinds of medication also.
[00:07:09] And I think he gave them hope.
[00:07:12] He gave them hope, whereas I Think our clinic gave them truth.
[00:07:19] Now, this is only my personal opinion, okay? This is not something written in stone. This is what I believed was happening.
[00:07:30] So we had a patient, and his name was Dan. He was wonderful. Oh, my gosh, he was so wonderful. He was one of the most outgoing people I have ever met in my life.
[00:07:45] We have a lot of Dutch people here in western Michigan, and he was Dutch himself.
[00:07:54] And he was tall. A lot of the Dutch men are very tall. As a matter of fact, we had a lot of Dutch physicians that worked here. And as you know, I'm an Italian, and I'm working with these Dutch physicians, and all of them just towered over me. So they'd be like six, four, six, three. And I'm barely five, too, right? So they'd be towering over me, and I'd be like, well, I'm working amongst the trees today. They just got the biggest kick out of it.
[00:08:26] But this patient, getting back to the patient, was tall like that, too. I believe he was about 6, 4.
[00:08:34] So gregarious, so outgoing.
[00:08:38] I didn't meet him until after I had been there, probably about six months.
[00:08:45] So he had already had his surgery, he had already gone through phase one of his chemotherapy and radiation, and now he was in maintenance mode.
[00:08:57] Well, what happens with maintenance mode is you're sitting around waiting. You do take oral chemotherapy once every six weeks, but you're continuingly having MRIs looking for that tumor to start regrowing again, and it's just a question of when that is going to happen.
[00:09:22] So I met him, you know, well into his treatment, and he came in with his wife.
[00:09:30] When you bring him back to the room, the patient room, where he's going to be seen by the physician.
[00:09:37] His room was at the end of the hall. He looked in every single patient room on the way down the hall and waved hi to everybody, talked to everybody, shook everybody's hand that was in the hallway.
[00:09:52] And he had been like that since day one.
[00:09:55] So he had gotten the nickname of the mayor in our clinic because he was like a politician, we thought. He was always smiling, always so charming. You would have never, ever known in 20 million years that he had a terminal brain tumor diagnosis and that he had already undergone surgery and treatment. You just wouldn't have known.
[00:10:22] Just didn't seem possible.
[00:10:25] His wife, for as how gregarious and outgoing he was, was very stern, I would say subdued and definitely his best patient advocate.
[00:10:42] I'll tell you what, if I was sick, I would have wanted her for my patient advocate. I can definitely Tell you that she would do anything to save this man's life.
[00:10:57] They had three young daughters. I think they were in, either in middle school or just barely starting high school when their dad was diagnosed.
[00:11:08] So you can imagine this was just devastating to this family. It just doesn't even make sense.
[00:11:16] So in the interim, his wife, who was his advocate, decided that she needed to look around at other health care providers, other regimens.
[00:11:30] Can they do, like, health healthy, you know, nutritious diet? Can they do this? Can they do that? Is there any new technologies out there that they could look into? There had to be something more that she thought maybe we were missing in our clinic. This is very, very common. This is very common.
[00:11:54] So you see, it's not just the patient that might be going through denial, but it's also the spouse and the family that goes through denial too. Those five stages impact everybody around you.
[00:12:11] They go through that with you together.
[00:12:15] So she decided she had heard about this clinic in Mexico, and she definitely wanted to take him down to Mexico to get a second opinion and see, see what that doctor had to say. And sure enough, she took him down there and.
[00:12:34] And I think he ended up getting treated down there several times. I know he did get MRIs down there, and I don't know what kind of medication they were giving him, but he was getting treated down there.
[00:12:50] Finally, after about six months, they decided to come back and just have an MRI with us to see if what he was doing down there was making a difference.
[00:13:02] So they get a copy of the MRI films or they have it sent to our system so that we can look at the MRI films online.
[00:13:15] And I'll never forget it, because the neuro oncologist at the time was like, my gosh, their technology is so far behind what we have.
[00:13:29] You know, I mean, we were doing advanced pictures and we could see much clearer images, much more detailed.
[00:13:39] And the images from Mexico were not. They were a low, lower grade quality, and they would not be able to pick up necessarily the nuances that our neuro oncologist and our neurosurgeons would have seen immediately.
[00:14:03] So nonetheless, she did a comparison of the MRI from Mexico and the MRI from our clinic.
[00:14:13] And what came out of that discussion is that, yes, his tumor had started to grow again.
[00:14:25] I don't think he or his wife believed it.
[00:14:29] I wouldn't really expect him to believe it because he was in happy denial. And that is just how I would define him. You know, just talking to everyone, pleasant to everyone in his mind. He was doing great. He didn't feel ill at all. And that is the hard part about a terminal brain tumor.
[00:14:53] Sometimes you do have symptoms with it, and sometimes you don't. Usually you have symptoms when they're, when they first diagnose you.
[00:15:05] Like you might have a seizure or erratic behavior, or you may start gibberish when you're talking. So there's some kind of thing, event that happens that gets you into the emergency room.
[00:15:20] But after that and after treatment, I mean, many of my patients, you would have never even known that they had a terminal brain tumor. They were just proceeding on with their life and going through treatment. The chemotherapy was an oral chemotherapy. It doesn't make many patients sick. They do fine on it.
[00:15:43] The worst part of the treatment really is the radiation.
[00:15:47] So the radiation is what can make you more nauseous than any of it. But they went through all of that, all of that already by the time I had met him. And they were thinking, according to what they had learned in Mexico, that he was perfectly fine, doing great, no problem.
[00:16:12] So you can imagine the shock when they get into my clinic and the neuro oncologist and the neurosurgeon are saying, hey, your tumor started to grow again and we're going to have to come up with a different treatment for you.
[00:16:29] His wife, who was the strong advocate for him, absolutely did not want to believe it at all. Matter of fact, she did not believe it and she was kind of argumentative. I would say they were solemn and a little bit unargumentative. Wife, I mean you, I mean, side, you have to imagine that his wife was madly in love with him and she was his strong advocate and she was a warrior. She was going to fight for him and everything that he needed to make sure that he could continue to go on.
[00:17:12] So that's how strong our defense mechanisms can be.
[00:17:18] That's, that's just an example of many that I have witnessed.
[00:17:25] So they leave the clinic that day devastated. His wife, is he of course, still being the mayor, as we called him, was still shaking people's hands on the way out the door of the clinic. Very gregarious guy, just a great all around guy, Very, very nice.
[00:17:46] She goes home with him and probably about a week later I get a call from her. And she was angry on the phone. She definitely was angry and questioning our results of the mri, questioning what next steps would be for treatment, questioning whether or not they even wanted to put him through that.
[00:18:12] Definitely I felt like she was kind of taking it out on me. But hey, that's what my job was if I was in that situation, maybe I would have been the same way.
[00:18:23] You know, you're just talking to the first person in the chain of command, and that's the person that you're allowed to kind of unleash on.
[00:18:33] So I didn't hold any regrets for her to talk to me the way she did.
[00:18:41] I tried to go down the path with her of what next steps might be, and that I would talk again to the neuro oncologist and the neurosurgeon, get their recommendations again and see what they thought this patient should path should start up next.
[00:19:06] So she said she was going to think about it again, and she hung up. I talked to the neurosurgeon and the doctor. I got the next stages for the plan of care, and I called her back a couple days later. And when she got on the phone, she's like, well, I guess I get that you think that he should go through treatment again. But I ended up talking to his physician again in Mexico, and he is painting a completely different picture.
[00:19:37] And all of this has just been too much, way too much for our family to take. And I feel like we need a break from all of this.
[00:19:49] We just need a vacation. I said, I completely understand.
[00:19:54] I. I definitely understand.
[00:19:56] I wouldn't want to be in your situation.
[00:19:59] We're going to be here for you.
[00:20:02] Where do you think you want to go?
[00:20:05] And so then she tells me that she's made plans for the whole family to go to a tropical island.
[00:20:12] I'm like, oh, my God. Really? She said, yes, we're gonna go fly to a tropical island. We're gonna. We're planning on going for two weeks.
[00:20:21] Hopefully, if everything goes well, we'll get back. We'll take another week off. And so we're thinking we'll come back and see you in about a month or so.
[00:20:32] And, you know, I just want a copy of all of his records so that I have it with me when we're on the plane and if something were to go wrong when we're on vacation, although I can't imagine that that's gonna happen.
[00:20:50] So I made a copy of all her records, his records, and she came and picked him up, and I wished her bon voyage.
[00:20:57] I told both the oncologist and the neurosurgeon, and both of them were like, you gotta be kidding me. That tumor is growing, Dawn.
[00:21:07] I said, I know that. I know you told them that, but they're in denial, and there's nothing we can do about it. Maybe a vacation is the right thing for them to do.
[00:21:22] And they're like, okay. I. You know, I mean, I don't think they really felt like that, but they're. I'm. I'm actually trying to comfort the two of them, right? They're like, todd, don't try to tell us. We are the experts. I'm like, okay, but whatever, maybe this is all gonna work its way out, right?
[00:21:43] So, you know, we get on with the business at hand in our clinic.
[00:21:49] And I just didn't think about him after that because I thought, you know, they made their decision. It was an informed decision.
[00:21:59] Everyone was clear with them right up front. I gave her the records up front. She talked to both the doctors at our clinic and also the doctors in Mexico, and she made an informed choice.
[00:22:13] So off they went on their tropical island vacation.
[00:22:18] I think it was about two to three weeks later when I got a call, and it was not from the patient or his spouse.
[00:22:34] It was from a family member calling to let me know that the patient had died.
[00:22:43] And I was like, you gotta be kidding me.
[00:22:47] She's like, no.
[00:22:49] I said, what happened? She said, they were on their tropical island vacation.
[00:22:57] So they got to the island, and I don't think they were very long there. And she had gone to take a shower, and she came back to the room, and he was gone. He was in bed and gone.
[00:23:12] So she had to pay to have the body shipped back to the United States.
[00:23:20] And their vacation was over.
[00:23:24] And I was like, oh, my goodness. Oh, oh, oh, oh.
[00:23:33] It was so shocking.
[00:23:35] It was so sad.
[00:23:39] The one thing I think about when I look back, though, is I don't think she should ever have any regrets about anything at all, including going on that island vacation.
[00:23:55] She advocated for him every step of the way, even if it meant going out of the country to a different doctor, Even if it meant taking the whole family away for a tropical vacation.
[00:24:12] That's the kind of spouse I would want to have.
[00:24:16] And even though we have the five stages of death and dying, they're damn hard to stick to.
[00:24:24] I mean, you know, you just gotta hang on with your faith and hope that life gives you what you need and that God is right there with you. Because you never know when your day is gonna come and you're gonna be called.
[00:24:48] I hope you enjoyed the story.
[00:24:51] It's a little bit different from some of the other stories, but I'm just trying to give you a variety of patient experiences that I was privileged enough to go through while I was caring for my patients.
[00:25:11] And this one tells a story too.
[00:25:16] To all of us.
[00:25:21] Until the next time.
