How Do You Survive as a Caregiver?

Being positive and fighting goes a long way!  Listen to John Hoffman tell an inspirational story about his wife, Judy’s battle with an inoperable brain tumor and how she lives a full life now.  His story tells us how they chose to go to Oregon to do an experimental treatment. Judy is a hero: not only did she win her battle with cancer, she went on to help found Grey Matters, a nonprofit organization to help those fighting brain tumors. Rather than thinking that she would die in vain, she and her husband live to help others.

Transcript

0:02

Instrumental music playing

Kezia: 0:10

Hi, I'm Kezia, a stroke survivor and a member of BIND.

Carrie: 0:15

And hi, I'm Carrie, a stroke survivor and a member of BIND as well. And today we welcome John Hoffman, whose wife Judy was diagnosed over 28 years ago with a very unusual brain tumor. And since then they have gone on, she was given just a couple of weeks to live, but she's still going strong today and with us here. So, but then after that, they founded the Gray Matters. North Texas Brain Tumor Support Group, which is dedicated to providing emotional and logistical support to brain tumor survivors and their families. So welcome, John.

John: 0:46

Well, thank you.

Brian: 0:47

Welcome to BINDWAVES, the official podcast of the Brain Injury Network of Dallas. I'm Brian White, BIND's Executive Director. On each episode, we'll be providing insight into the brain injury community. We'll be talking to members and professionals regarding their stories and the important role of BIND's Clubhouse. We work as a team to inspire hope, community, and a sense of purpose to survivors, caregivers, and the public. Thank you for tuning into BINDWAVES. BINDWAVES Let's get on with the show.

Carrie: 1:19

Just to get started, um, can you tell our listeners a little bit about you?

John: 1:23

Well, uh, we're originally from the Northeast and, uh, I work for the DuPont Company as a chemist, and I was transferred to Chicago, Illinois. Uh, we spent about four years in Chicago, and then I was transferred down to Dallas, Texas, and we've been in Dallas now for about 43 years.

Kezia: 1:41

Okay. I feel like we heard so many cool things about you and I would be like, let's talk about chemistry. But I'm sure all of our listeners will hear more about you and like how all of your, um, your experience kind of partakes into who you are today and how you got here. Um, so we do also want to know a little bit about your, uh, wife's experience and then how you helped her, like as her, as her husband. So if you could share that too, that would be great.

John: 2:09

Okay, thank you. September 30th, uh, 1991, um, my wife was diagnosed with a primary central nervous system lymphoma. Uh, but prior to that, uh, my wife's a registered nurse and she was working for, uh, a doctor in Plano. And she was doing some things that were funny that nobody told me about. Uh, but then on Uh, Friday, September 30th, uh, 1991, um, she started doing some unusual things, and, and so I, I talked to her boss, who, who is a, a, a doctor, and I said something was going on, and he said that, well, you know, if you, we put her in the hospital today, she's just going to sit in the hospital all weekend, and not much is going to get done. And, let's wait till Monday and we'll put Judy in the hospital. So, over the weekend, uh, Judy just really went downhill. And, you could look in her eyes and there was nothing there. I mean, it was just like looking straight through her. She was like, for lack of a better word, a zombie. And so, Monday morning, we put her in the hospital and they immediately, uh, gave her an MRI. And then, a week later About an hour later, after the MRI was done, they separated us, which I thought it was unusual, but anyway, the doctor, one doctor told Judy and the other doctor told me that Judy had a brain tumor and it was pretty bad. And that, um, it was too big and too deep to operate on and she might only have, uh, seven, 7 to 10 days to live, which was pretty shocking and, uh, you know, it's hard to describe, you know, being told something like that, you know, about a loved one, but that started our journey on brain tumors.

Carrie: 4:05

Now, I know that things change quickly. I mean, people go from being, like I said, being a husband, you're already partially a caregiver, but when someone has a brain tumor or a brain injury, that caregiver role takes on a whole different, unique role. Um, how did you How did you handle that? How did you deal with that?

John: 4:24

Well, I can say thankfully, uh, because of my background and what I did, you know, I am detail oriented. And, uh, right away, I started thinking, you know, what can we do about this? And, uh, I certainly didn't want to hear somebody tell me my wife could be, could pass in the next two weeks. And so what we did is, uh, we talked to the doctors and, uh, eventually they sent us down to UT Southwestern in, uh, down in Dallas. And we, uh, linked up with Dr. Eugene Frankel, who was the Director and Professor of Oncology and Hematology. And so in my book, I mean, we couldn't have been linked up with anybody that was better. But that started our journey, and, uh, the tumor was too big and too deep to be operated on without devastating effects, and so her only options were chemotherapy and radiation. And when I spoke to the doctors, I asked them, I said, you know, uh, what's chemo going to do? You know, what's the function of the chemo? And then what is radiation going to do? And, uh, I asked them if radiation could save her life. And they said, well, and remember, this was 33 years ago. I mean, things have changed so dramatically, you know, over those 33 years. It's unbelievable. But they said No, it's not going to save her life, but it could give her 12 to 18 more months of life. And so what I did is I told the doctors, do not radiate her. I said, let's try the chemo and do whatever we can with the chemo. And then if we find out that the chemo is not working and that we need more time, then we can radiate and we can get more time. And so we started chemo down at UT Southwestern, uh, unfortunately. And I learned a lot of things from, um, the doctor, but eventually things stopped working and he said I think you need to go to Portland, Oregon. I have a student out there that I taught, and he's working with something called a blood brain barrier disruption. Because what I found out is when you get chemo, it really has a very difficult time getting in the brain. Because your brain has something that's called the blood brain barrier. And the blood brain barrier really protects your brain against toxic materials. And if there's anything toxic in this world, it's chemotherapy. And so it made very good sense to me that, If the blood brain barrier was trying to keep out the chemotherapy that would cure my wife, that was a problem. And if there was some place that could solve that problem, and that was Portland, Oregon. So I took Judy out to Portland, Oregon every 28 days for a year and a half. And Judy had what was called, had 24 treatments, uh, basically where they opened the barrier chemically, and then they put 100 times more chemotherapy injected directly into her brain. They would do one hemisphere of her brain one day, and the second hemisphere of her brain the second day. And then she would be released, we'd fly home, and in 28 more days we'd go back. Happened 24 times. She was, uh, they flooded her brain.

Kezia: 7:54

Wow. That's, that's a lot. Like, I think this is the first time I hear about this. So it's like a little bit shocking and like a lot, it's a lot of information to gather and put together. Um, but you were also experienced, you were also saying how, um, her symptoms were very different. Like, you couldn't explain, and you're very, you're very smart, you have a lot of things going on. Like, what were her symptoms like before you even knew where she was at, um, with the, with the tumor? Like, what were her symptoms?

John: 8:25

Well, to be honest, and maybe, maybe it was me, uh, I didn't see a lot until, you know, that Friday. But then when I talked to her doctor, there were some of the People that work with my wife, they said, Yeah, she was doing some unusual things. She would take blood from a patient, and she'd go put it in a drawer and leave it there. She wouldn't send the blood to be analyzed. And when everybody started talking and we added everything up, we said, there was something wrong. I didn't hear these things. I only visually saw what was going on at home. And on that Friday, I really noticed something. Because when she started to slip, she went downhill fast.

Kezia: 9:14

Yeah.

John: 9:15

Very fast. And, uh, I just picked that up and that's why I took her to talk to her boss and say, Hey, what's going on here?

Kezia: 9:22

Right. And I had another question. And then, um, for, like, once she started doing the treatment in Oregon, it's okay to be flying, like, that frequently? Um, regardless of the, um, the treatment she was being put through? I mean, if she didn't, she's fine.

John: 9:43

It's so very difficult to describe, to be honest with you. And, uh, I look back and I really wonder how we ever did it. Thank you. Because I had to give Judy needles in the stomach on the airplane. She was taking, uh, Coumadin to thin her blood. And Coumadin's a long lasting drug. But with the treatment, she was actually being operated on in Oregon. They considered it an operation. And so she couldn't be on Coumadin. And so when we flew to Oregon, we had to take her off of Coumadin and put her on Heparin. But heparin is only a short acting blood thinner and it only lasts for like four hours. Well, the flight alone to Oregon was four hours. And, you know, you have to go to the airport, you have to go through security, you have to wait for the plane. And, you know, we weren't working with somebody that had the usual mobility. So anything we did took longer. And so We were required, I was required to give her shots in the stomach on the airplane to get her to Oregon and it was a, it was a horrific experience and I honestly look back and I, I, I don't know how we did it, but I made up my mind, my wife is going to survive.

Kezia: 11:07

Right.

John: 11:08

And if she did not survive, I wanted to make sure that we learned something that would help somebody else. Uh, three quarters of the way through her treatment in Oregon, they told me, they said, John, take her home. I said, why? They said, it's not working anymore, John. I said, the heck we will. I said, I don't care what you do. And I mean this. I said, kill her. But don't let her die in vain. If my wife is going to pass, let's learn something that could help someone else survive. And they told me that, well, there's this drug called carboplatin, which we haven't used on a human yet in the brain. And I said, use it. And they did. And ultimately, that saved her life. That's the drug they injected in her brain. And it killed the, killed the cancer, uh, it almost immediately, uh, for lack of a better word fried her hearing. My, my wife is severely, um, hearing impaired, but in my book that was a, uh, a small price to pay. But they learned from that experience and everyone thereafter, they, they injected another drug that prevented them from losing their hearing.

Kezia: 12:41

Wow. Well, this is a very impactful story. Like I, I didn't know as much from you. So I'm very thankful for you being here to, um, basically to share this story. And it's very detailed and it's, it's, It's shocking, so I'm very thankful for you being here. Give me a minute. I do want to remind all of our listeners to make sure to check us out every Thursday. We do have great guests, just like John, so make sure to check us out. And check all of your social media platforms to follow BINDWAVES. Okay, so I have more. I have so many questions, but if you want to take over. No, I know. I was just like, wow.

Carrie: 13:19

I know it is, it's crazy, um, thinking about all that. So, did you eventually have to do radiation as well, or were you able to stay away from radiation?

John: 13:26

No, she was never radiated, and basically the protocol that she was on, let's call it what it is, it was experimental. Sure. Yeah. And, um. So after everything was over and, you know, four, five, six years later, whatever it was, I don't know, they looked at all the results and I got copies of the results and they basically found out that the test group that was radiated did less, was less successful than the test group that was not irradiated. So basically, you know, the the call that we made was A good call. And, and, and again, I'm very thankful for my nature and for my background as a, well, for lack of a better word, a scientist. Uh, but nowhere's near what these people were. I mean, they were in the outer limits. They saved my wife's life. And I, I, I don't know how we did it for two years.

Carrie: 14:29

I think it's amazing that, um, it really shows how much you're passionate about science. Just helping everyone in the brain cancer, tumor world, because you're saying if my wife dies, I can live with that, but don't let it be in vain. We need to know what, what works, why it didn't work, what we can do for others, and that, that just amazes me. I mean, it, is brain cancer common?

John: 15:01

Um. It's not uncommon, let's put it that way. And I think now we're seeing more and more of it and it is, there's lots of cancers. They're all terrible, terrible. And I don't wish any, any on anybody. But when you've got a brain tumor that's malignant, you have a very, very serious problem. I mean, it's typically life or death. And, um, it was my goal that, I was broken hearted, I love my wife with all my heart, and I wanted to keep her on this earth as long as I could. But if she was going to pass, I wanted to have a legacy for her, that she would leave, that she would teach the doctors something that would save someone else's life.

Carrie: 15:55

You know, it sounds like y'all did that.

Kezia: 15:57

Yeah. Yeah, and I think only sharing the story here on the podcast and having more listeners, I think it's really important. Because for right now, just what I'm learning from you right now is like your dedication to being detailed and researching and seeing different options. Because a lot of the times, like for example, like for me, I wasn't able to do that for myself. And I think I am that type of person that I always want to see options. But knowing that that's a possibility, you know, to learn, to learn and take time and figuring out maybe as a caregiver, as a, uh, as a partner, um, is really important for that person and also for yourself is really important. And I think it's good for people to hear that too, so.

John: 16:43

Well, you know, care, a caregiver has such an important part in it because, you know, you said something, uh, my, my wife had absolutely no idea what was going on. All I wanted Judy to focus on was the To live, to live, and you put all your energy into it, you know, some people got upset when they lose their hair or whatever and you know, when you get chemotherapy, I understand the first time you get it is the most important time and then each time thereafter the disease sort of gets acclimated, or that's probably the wrong word, but or is less effective on the cancer. And so I told the doctors, I said, you hit her as hard as you can hit her. I said, let's kill this thing. And, you know, Judy felt terrible. She is my hero. She's the strongest woman I have ever known. But, and there were times she would tell me, she'd say, John, I can't take it anymore. And I'd say, okay, we're gonna stop. But you know what's going to happen, that maybe the next day she'd say, I really didn't mean it, John, but I used to tell her, I said, you know, you know how bad you feel, Judy? How bad do you think the cancer feels? So I sort of, I'm concerned when people say, oh, I feel great, you know, I didn't lose my hair and, you know, and I just sit back and I think, I just hope they're getting. You know, the maximum effect from the treatment they're getting. I mean, and, and I'll say it again, Judy is my hero. She is the strongest woman and what she went through is unbelievable.

Kezia: 18:31

Yeah, I, I mean. Just your story. It's like, pretty impactful for me, for sure. It's, it sounds, I mean, I think we hear brain injury, um, stories a lot as members of BIND, and then also, we've been experiencing a lot through our guests alone. Um, but this is definitely a different, different, um, story. But I, I love that you're saying that she's like, You're here like the strongest person. Uh, earlier you did say she had a hearing issue as a limitation. Does she have anything, any other limitation, um, from her like day to day life?

John: 19:05

Well, she's got Let's say stability problems in physically walking. Um, I'm always, I'm always sure that I'm next to her to hold her or just hold her hand to give her stability. Because, uh, you know, as we get older, our stability gets It gets a little worse, but, you know, she has another issue to work with and, and if you fall, it could be a serious issue. I mean, you go to the doctor now, and the first thing they ask, you know, the older generation is, you know, have you been falling? And I mean, I didn't mean it to laugh, but the first thing I say, have you fallen? And it's, it's important. So. It's the hearing issue and, and it's her stability that I watch, but she's, if, if she sat down here today, uh, you probably wouldn't know she had a brain tumor. Yeah, and I love that. I love to hear that. I like to hear that. I also, you've been talking a lot about the story and about your experience as her husband, her caregiver, and how amazing she is. Can you share to us a little bit of how you created your community and like where you are right now with Gray Matters? Well, you know as I said, it's it's such a horrific experience and And it honestly breaks my heart when I hear someone else has a brain injury or a brain tumor and, you know, we're a family. We are a family. And, you know, they told me when Judy first, you know, went into treatment, they say, John, you're probably going to need counseling. And I think you can imagine 33 years ago what men thought about going to a counselor. But it was unbelievably helpful. Judy would go alone, I'd go alone, we'd go as a couple. But that taught us something. Uh, you know, in order to talk about our issues. And so we found two other couples in Plano. They were both in the medical profession. Uh, but anyway, um, we started to meet. There's six of us and we just started to meet and we'd sit down and we'd talk and We understood each other. You know, if you had a physical deformity or if you didn't have any hair or if you had a scar on your head, we didn't care. You know, we understand. You know, people, unfortunately, some people tend to stare or whatever, but not in our group. And it just so happened, and that happened during Judy's treatment where we started to meet. And then, then the group just starts to grow. And we went from, you know, six people and then just more and more people. And then we found a place where we could meet. And we became so popular that, uh, October 20th, uh, 2000, we came, became an IRS 501C3 nonprofit organization. And over the years, I mean, on our rolls, any, any particular time, I bet there's 150 people. on Grey Matters Rolls. And they can come to the in person meetings or get on the Zoom calls. We never had Zoom calls until COVID came. And COVID really hurt us. But we're back up and running in person now again. And, but you know, if you walk in, we're family. You know, you need a meal, we'll get it to you. You need a ride, we'll give it to you. And, and it's not something that Gray Matters financially supports because we can. It's the members. We're a family. We hug, we laugh, uh, we cry. We cry, but that's okay to cry. I mean, that's a mechanism that you're given to, you know, release emotion. Um, but, you know, sometimes I think it's been 33 years. Why don't you give it up, John? Thirty three years. And, and the thing is, I, I can't give it up. I can't give it up. I have a wife that's sitting at home right now that I love, and I can hold her hand, and we go out to dinner, we go to the movies, and if we can help just one person One person going through this journey, then all our efforts are successful.

Carrie: 23:49

I love that. Um, we kind of are all part of the same community. I know there's, um, people may be wondering, you know, Well, Carrie, Kezia, y'all are brain injury survivors. Y'all don't have brain tumors, brain cancer. Why are you talking to this guy? But what people don't know is unfortunately, sometimes because of the cancer or the tumor in the surgeries, it could cause a stroke or some other sort of brain injury. But, so we are kind of entwined in that way. I know that we have a lot in common in the, like you said, our community, we support each other, and I know you do a lot with Head for the Cure as well, so.

John: 24:29

Well, Carrie, without question, you know, our focus is primarily on brain tumors, but really, you know, it's all about brain injury. You know, when your brain is injured, you, you have issues you're going to have to cope with, and unfortunately, um, Um, there aren't, some people don't have a place to go, but you know, Brian White, he comes to, he's our licensed professional counselor at Gray Matters, so we've learned about BIND too. And, uh, There's no difference between us. You know, we're both going after the same thing. To help people, to give people hope, to help people cope with what they're going through, to help them understand the doctors and the language. You know, we certainly cannot recommend treatments or, or doctors or whatever, but we can guide people. We guide people. And, and my, my thing is, be strong. Be positive and fight. Fight with everything you have. And don't rely too much on the internet. You know, it can be very discouraging. You know, people come to Gray Matters and I'll say, You know something? Everything you've gone through, I've gone through. And you know something? There are probably some things that I've gone through that you haven't even thought about yet. And so we're here to help you make that journey. And that's what BIND is about also, is to help people make that journey. We care. You care. We're a family. We're a family.

Carrie: 26:22

We are a family and we, we love collaborating with Gray Matters. I know we'll be going, some of our group will be going to speak next week at your support group. I love that y'all are just right down the street and again, like I said, you do a lot for Head for the Cure and we do everything we can for Head for the Cure too so that again, like I said, we're all brain injury related. We are a big community but as we talk about Gray Matters, um, I guess probably the easiest thing to say is when do y'all meet? when do y'all meet so that, um, we can put that information in the description?

John: 26:54

Well, we meet, we meet at Encompass, Encompass Rehabilitation Hospital in Plano on 15th Street and Independence. And we meet the second Tuesday of every month at 7 o'clock. And, uh, then on the fourth Tuesday of every month, we have, uh, our Zoom call. And believe it or not, we get people on the Zoom call from all over the nation. I mean, Washington, you know, state, and, you know, but anyway, that's when we meet and, uh, during our in person meetings, we actually have, you know, little something to eat to keep you interested. We have speakers. Uh, but again, we're there to support each other. There's, I, I believe there's not a question somebody going through this journey can ask where there's not an answer in the group.

Kezia: 27:48

And I, I honestly, I just love everything that you've been sharing, uh, and then I think it's really important also what you, uh, you mentioned that, uh, We're all a family and we all do this and how we need to keep away a little bit up out of the internet, um, to like self diagnose ourselves. But I do think it's really important to look at our bodies and understand each other. And the people that have, that we, what we're feeling, we need to express how we're feeling. And the people that are next to us that have had, that are, have gone through this like 10 years ago or however many years ago, they're like, Oh, you know what? I felt like that too. And then it just creates it like a closer bond and it's not it's not so bad anymore. Like you don't feel alone anymore. And it's so important for that.

John: 28:37

I think it's key what you said. We're not alone.

Kezia: 28:40

Yeah. Yeah, I agree. Well, I did want to thank you so much for coming. I feel like we can talk about this forever. It was very impactful for me to listen to you. I'm really glad that I met you in person. So thank you so much for being here.

John: 28:54

oh, thank you.

Carrie: 28:55

Thank you, John. We appreciate it. And then again, for our listeners, um, if you would like to contact us, remember you can email us at bindwaves@thebind.org and we will put the Gray Matters information out there as well. Um, you can follow us on Instagram at BINDWAVES and you can visit our, um, website at thebind.org/bindwaves. So we also have Facebook well bind, has Facebook bind waves doesn't. Um, if you're interested in becoming a member or volunteer, visit the thebind.org and there are applications for those two positions out there.

Kezia: 29:26

And like I said earlier, don't forget to, like, share on all of your social media platforms and, uh, continue to listen to us on every Thursday.

Carrie: 29:35

And as Kezia said, you'll find a new episode every Thursday. So until next time.

Kezia: 29:40

Until next time.

29:41

We hope you've enjoyed listening to BIND Waves and continue to support BIND and our non profit mission. We support brain injury survivors as they reconnect into the life, the community, and their workplace. And we couldn't do that without great listeners like you. We appreciate each and every one of you. Continue watching. Until next time. Until next time.