Episode Transcript
[00:00:00] Hi, everyone. This is Dawn Clem, and you are on my podcast, Milkweed and monarchs. Today, I'm going to be sharing with you the story of Chris.
[00:00:11] I first met Chris when he came into the brain tumor clinic on his initial post op visit.
[00:00:20] So, let me explain a little bit about the brain tumor clinic so you have an understanding of how it works.
[00:00:28] So, first of all, brain tumor patients usually end up having some kind of event.
[00:00:37] So, by that, I mean the brain tumor might initiate.
[00:00:43] And it starts out small. Usually it can be in any part of the brain, and over time, it grows.
[00:00:53] When it's grown to a size large enough, it will start to impact functionality. And depending on where it's located, that's where you'll start to see some deficits. So, for instance, many times, patients might have seizures, and that will bring them into the emergency room, and they always get an MRI of the brain, and then they'll see that there's a growth there, and then they take them to surgery to remove the growth or tumor.
[00:01:35] That's what happens. Many, many times, they have a seizure. Another thing that might happen, though, is they might start to behave erratically. I had a patient that was taking her children to school, and she started driving erratically, and the kids were freaking out, mom, pull over. Mom, pull over. And she wouldn't. She was kind of laughing, they said, and then she ended up having a fender bender.
[00:02:07] So the fender bender is what brought her into the emergency room once again, they do an MRI of the brain, and then they see, you know, what's. What's going on to cause her erratic behavior.
[00:02:25] And then the other patient that I had, just as an example, was on a ladder painting his house.
[00:02:35] And he didn't feel right. All of a sudden, he just felt kind of cloudy, didn't know where he was, fell over backwards.
[00:02:44] His wife called the ambulance, and he ended up going to the emergency room. So these are the kind of things that happen. They get into the emergency room, and then if it's after they've had their MRI and they see that it's a tumor, they talk to the patient in the family, and ultimately the patient goes to surgery. They remove the tumor. The patient usually remains in the hospital, you know, three or four days, depending on the severity and the location of the tumor. And then they're discharged to home.
[00:03:18] And then we like to see them in the office one week post operatively to a check on their incision. By then, we should have the pathology back. And so they'll speak with the neurosurgeon and he'll give them the pathology, he or she, and then they will speak with the neuro oncologist if the pathology comes back cancerous. And then she'll talk about, you know, that you're going to need to go through chemo and radiation. And then they would speak with both myself as the nurse, navigator, and the PA.
[00:04:03] We would go over their complete treatment plan, and the PA would ultimately order all the medications that they may need to get started with treatment.
[00:04:13] And then I would just walk them through what the treatment plan looks like and let them know that I'm going to be following them closely through treatment and that they can call me should they have any questions or concerns.
[00:04:30] So that's their first post operative appointment. And then what would happen after that is they would start radiation, ultimately four weeks after the initial surgery, and radiation is six weeks or 42 days. And then they would have a month off, get an MRI, see how it looks where they remove the tumor. And then they would start on oral chemotherapy. So that's pretty standard treatment across the country.
[00:05:07] So I met Chris on his first post op visit to the office.
[00:05:15] He came from a group home, and the woman that brought him to the appointment is. Is someone that worked in the group home. She was. Oversight and seeing daily functions were maintained in the group home. So she would, like, get the meals ready, make sure the patients were, or the residents were getting two appointments if they needed to go, that kind of thing. So she came with him to hear the results and be emotionally supportive to him.
[00:05:49] The very first words out of his mouth when I came in the room to meet him were, how could this have happened to me?
[00:05:59] How could this have happened?
[00:06:01] Well, Chris was 32 years old, and he had a backstory.
[00:06:08] He had been living with his mom, and he had two older brothers. His mother ended up having breast cancer, and ultimately she died from the breast cancer. It left him with his two older brothers, and he told me that they bullied him. Terrible.
[00:06:31] So he did not finish high school, and he decided that he was going to take off and move to Florida.
[00:06:40] He didn't really know anybody down there, but he was gonna go and take his chances at having a better life.
[00:06:50] What he told me is, ultimately, he just ended up becoming an alcoholic and drinking all the time. And he found himself getting in and out of trouble.
[00:07:01] So after about six to eight years, he decided to move back to Michigan. At least he knew people up here. He thought it would be better for him.
[00:07:14] By now, I don't really think he's been employed more than a couple weeks at a time. He just was like a drifter.
[00:07:22] So he gets up, back up to Michigan. He really had no place to go. And they found him living underneath an overpass on the highway.
[00:07:37] And so they brought him in. I think he said it was the police, actually, and they ended up taking him to the group home that he was now residing in.
[00:07:52] He really liked the group home. It gave him a purpose in his life. And he actually assisted the woman that was there with him at the initial appointment. So when they were getting ready for the meals for the residents, he would actually help her put salads together, help her make sandwiches, put the silverware out, get the drinks ready, and then they have a big open dining area with picnic tables. And so he would help take care of all of that. He labeled himself as a sous chef, which I actually really like that, because he thought he was, you know, making a difference. And that was really good.
[00:08:36] So, I mean, one of the first things he was really worried about was he going to be able to work, because they were paying him to help her out. And, I mean, that was probably the first time he had a somewhat normal life with a job, and he was working and making a difference, and he felt good about it.
[00:09:00] When he looked at me and he said, how did this happen to me?
[00:09:04] He launched right into the next sentence, was, my mom had cancer. My mom died of cancer. Why do I have to have cancer? Kind of thing?
[00:09:15] And it was heart wrenching. It really was so heart wrenching.
[00:09:21] From the surgery, he had some neurodeficits, and he ended up having a limp. And so he walked with a cane.
[00:09:32] I explained to him what the treatment would entail, and that he was going to be going to radiation every day for six weeks. And he was like, I have no transportation. And the lady that was with him said, there's no way she could bring him every day. So I ultimately looked into public transportation for him, and we were able to get him a go pass for a year, so he could ride on the go bus for free for a year. And the go bus would stop right in front of our clinic. The clinic is right across the street from the hospital, so it's all good.
[00:10:13] And so that worked out really well.
[00:10:17] And he had the cane with him, so he was safe on that bus.
[00:10:22] So, anyhow, I would go down and see him in the clinic while he was going through radiation.
[00:10:32] One of the things that he lamented about to me many, many times is that he wanted to be able to speak with other patients that had a brain tumor like him. He just wanted to see how they were dealing with it and maybe have some camaraderie or a connection with someone that was going through what he was going through. Well, as most of you know, there's pretty strict privacy guidelines in the healthcare systems now, and HIPAA is alive and well, so we have to protect the privacy. Of course, that makes sense. We can't just randomly introduce people to each other, although I don't think it was a bad idea. But you don't know what the outcome would be, right? So I did ultimately go to my director and ask her, what would you think about maybe an email list you could sign up to participate in emails with other patients if you thought that would be something that you would like to do. And again, the organization really didn't look on that favorably.
[00:11:54] We did have a contact information from an organization in Chicago, and actually, that's where they're based out of, but they're nationwide. And what you do is you can call that number, they take your personal information, and then they match you up with someone of similar age going through similar treatment, and so you can have phone calls that way with someone, which seems really great to me.
[00:12:29] I thought that was such a good idea, so I gave that information out to just about everybody, but he was really interested more in an interactive type of relationship, face to face. I think the other thing that we do have are we participate with Gildas Club, which is a great space in Grand Rapids. They have an old farmhouse, and there they do a lot of support groups for different types of cancer patients. So depending on what your cancer is, they have a support group night. So that's another way where people can actually meet up. That way, it's more independent. It's not related to the hospital. But part of the problem with that, of course, is he had no transportation, and most of the support groups were in the evening. So he was very frustrated by the fact that he just couldn't talk to someone else besides his nurse navigator. Right, about what was transpiring with him.
[00:13:38] Well, he had been coming about a year, and he was really doing quite well with his treatment.
[00:13:45] He was doing great, actually.
[00:13:48] And the clinic was trying to move forward, get the word out about our clinic, and raise some money. The PA that I worked with had worked at a different organization before and had actually organized a five k run walk to get the word out. And so she had experience with that, and she suggested that we try to do something with the brain tumor clinic. So she ultimately called it five k for gray, kind of clever gray, meaning the gray matter or the brain. So we all really bought into that and thought it was such a great idea. She went to marketing, and she had postcards made up. And so with every patient visit, I handed out those postcards. We wanted to know the patients, to know that we were fully invested in trying to, you know, let everyone know about our clinic, that we were there to support them. And ultimately, we were trying to get resources to help run our clinic. It was just a good thing.
[00:15:06] So everyone was really excited about it. All the staff in the hallway were excited about it, even if they didn't work for the brain tumor clinic, it just made us feel more cohesive as a team, and it was an exciting time for all of us.
[00:15:24] Chris was over the moon about the idea of going on a walk.
[00:15:30] He knew he was going to finally have the opportunity to meet people that were being treated in the same clinic as himself for the same disease.
[00:15:41] And he was on board 100% to go do a walk, of course. Remember, he had a cane, so he was a little nervous about that. But I'm like, we're not going to be running. I will walk with you. It's going to be fine. So he was good with that.
[00:16:00] He was great with it. And every appointment before that date, he would talk about how excited he was.
[00:16:08] I actually went out and bought him a pair of tennis shoes for the walk. I thought, why not? Let's really, you know, make this a good. A good event for him.
[00:16:21] He was worried about a ride there, and of course, I said, I'm gonna come and pick you up, and I will be happy to bring you back to the group home. Don't even worry about that. All of this will be taken care of for you. It's going to be fine. So he started getting more excited as the time grew near. Of course, it was in early may that we had the event.
[00:16:45] And I wake up that morning, and it's pouring, literally pouring rain. I'm like, oh, I figures, you know, the best laid plans. They always say yes. So here we are. It was pouring rain. I could probably live with the rain, but it was cold, too. It was like a bitter cold that day.
[00:17:07] So I got up, I got dressed, and I ran down to the park where we were having the event. There was a big pavilion there with picnic tables underneath it, and so we could actually have the patients and their families check in for their number and everything to walk or run that day. And everybody got a t shirt, so there were a lot of people there. Even though the weather wasn't that great. And ultimately, the weather did break, so it didn't rain, but it was still overcast and kind of gloomy.
[00:17:46] So I checked in with everybody to make sure we were all good. And then I got back in the car, and I went to the group home to pick him up. He didn't come out to the car. He wanted me to come into the building so that I could see it. What a great spot. I could see why he felt at home there. It was, you know, just a. It's a really great group home, and I'm. I know that they're taking care of their residents there, and that makes you feel happy. So he gets in the car, and he's like a chatterbox. He talked the whole entire way there. And then we get there, and I get him registered, and the event is getting ready to start.
[00:18:29] The neurosurgeon who was the lead of our program actually signed up, and he ran the five k with his two teenage daughters, which was awesome. The neuro oncologist had just had a baby, so she brought her baby in the stroller. I mean, she was probably six months, maybe. And her husband came, and then her parents also came from Chicago, and the pa who really collaborated with to get this whole event together had her husband and her two children there to participate. And then my husband and my oldest daughter also came. So all of us were supported by our families for this event, and that was a really great thing, too.
[00:19:21] So we're getting ready. We get up there, the starting point, and he. Chris is with me, and he completely shuts it down. He's not talking at all. I mean, here he's been waiting for this thing for so long, but he isn't. He was petrified, really, to start communicating with people.
[00:19:47] I'm like, okay, but this is gonna change. I guarantee you. Just start up, and let's see how it goes. So we start the race.
[00:19:58] I'm walking. The pa ran by herself. The physician walked with her family, and I walked with chris, and my husband and my daughter walked ahead of us. So it was all. It was all good. And, of course, while I'm walking, so many people are coming up to me because I'm the navigator. They all know who I am, right? So I'm talking to them, and while I'm talking to them, I'm introducing them to Chris. Pretty soon, he starts to talk a little bit. Pretty soon, he starts to see that there are other people there that are close to him in age, some even younger than him, you know, and he just keeps walking, and he's walking, holding his cane. And ultimately, we made it through the walk. There were bunny hills up and down, and I would pace myself according to what his pace was, and we ended up making it through the walk. And at the end of the walk, the greatest thing happened.
[00:21:07] He lifted his cane over his head, like in a victory, a victory sign. Victorious. I'm victorious. I made it through this because he never really thought he could do it. And then that was such a momentous moment. Even the camera crew who was there took a picture of him raising that cane over his head, and that picture will live in infamy in our clinic. So that was pretty amazing. Just an amazing accomplishment for him.
[00:21:49] So all of us that had been there that day went back over to the picnic tables. A lot of patients and family members had already began to congregate over there.
[00:22:02] So I went over and sat down with all of them, and I brought Chris with me. And pretty soon he was talking to people, and he was feeling so good about the whole event and the people that he started to meet, and he started to understand that he was not alone, and he could share information with people and ask them questions. I can't say he was, you know, a chatterbox, but I can definitely say that he did talk and share some of his feelings with people, and that was a good thing. It was just a great day all the way around. So we probably sat there for another 45 minutes, I think, and then everybody started to leave. And so I said to him, come on, I'll take you back to the group home.
[00:22:56] So we get in the car, and we're going to go back to the group home. And I say to him, you know, I'd like to take you out, too. Lunch as a celebration. What would you think about that?
[00:23:10] And he's like, well, I'd like to get lunch, but if you don't mind, dawn, I'd like to celebrate with everyone at my group home. Oh, I mean, what could I even say to that? I mean, it just made me feel so good that he was going to go back and tell everybody, and he was so proud of himself. So I said, okay, I'll still buy you lunch. What would you like? Do you want sandwiches, or what would you like to do for lunch? So he says, I'd like to get Kentucky fried chicken. I'm like, okay, whatever. Whatever you want. That's what I'm gonna do. So I pull up to the drive through of a Kentucky fried chicken that wasn't too far away from there. It was 11:00. They had just opened up and we had talked about it, Chris and I, and he wanted a twelve piece meal deal, as they say.
[00:24:13] So I said, okay, we're gonna order a twelve piece meal. And she said, okay, that sounds great.
[00:24:21] What kind of meat would you like for the twelve pieces? And he leans over me and says, I'd like twelve drumsticks.
[00:24:30] I started laughing, and the lady in the window said, twelve drumsticks. I've never had anybody order that before, but let me go and check and see if I can actually give you twelve drumsticks. So she goes back and she checks and she comes back and she says, okay, we can accommodate that for you today. But just so you know, in the future, probably not going to be able to accommodate. The only reason why we can accommodate this right now is because we just opened up. But you can have your twelve drumsticks. What kind of sides would you like? He said, I'll take four large mashed potatoes. The whole time, I'm just cracking up to myself thinking, oh, boy, whatever. Don, you said you were gonna buy him lunch. So we get the lunch, and it's not too far away. Kentucky fried chicken from the group home.
[00:25:26] So I bring him back to the group home and he says, I got this.
[00:25:32] So I'm like, okay. So he and his cane and his bucket of chicken and bag of potatoes walked back to the group home entrance, and he walked in and he turned around and he flashed me a big smile, and I was like, wow, this was awesome. This was well worth all the time and effort that I put into making sure he could walk that day.
[00:26:09] You know, when I think about Chris, the one thing that comes to my mind every time is that he needed a connection, right? He was missing a connection in his life.
[00:26:24] That connection that makes you feel like you belong.
[00:26:28] And that's what he was feeling.
[00:26:32] And when he finally got to connect with people that weren't so much different from him, he really changed. His whole attitude changed. After that day, it was so clear to me that connection is what I talk about when I talk about milkweed and monarchs.
[00:26:57] You might not even know that you need a connection, but once you're connected, you feel like you're part of something. You feel like you belong. And we actually do need each other for that very reason.
[00:27:17] That's the end of my story for the day, and I hope you enjoyed it.
[00:27:24] Don't forget to go on my website, milkmon.com. Milkmon.com. All one word, please. Give me any suggestions that you might have for a story or. I appreciate all the feedback I can get to. It's kind of a lonely world when you're out there just talking into a mic, so it makes a difference when I get feedback from people, and I appreciate it. I'll be back on again with you in another week.
