Lisa's Story: Lymphoma Originating in the Brainstem

Recorded August 22, 2002

Listen With 25 minutes, 01 seconds.

Username: lisa777

Hello. My name is Lisa. I live in St. Petersburg, Florida. I'm 27 years old, single with no kids, and I'm going to tell my story, so here goes. It all started way back in 1995. I got dizzy when I was working out, and that was very odd for me, because I've always been a very healthy person, and I just never had dizzy spells before. But I blew it off as just one of those weird things that happens, but then they started to increase. They increased, and I kept blowing them off, and then I started losing my balance. And I was an avid swimmer, dancer. I loved gymnastics. I didn't have a problem with my balance. So this was just so odd. I mean, I was falling down hurting myself.

And then I began to hallucinate, very small things at first. And then I got very tired, like chronic fatigue, but I didn't know what it was. And then it all came together and I started having dreams in my reality. I didn't know it at the time. All I knew was that I was like in my own personal hell, basically. Either I was dreaming when I was awake, thinking awake, but I was not really awake. I was still sleeping. And then I got myself into some not so good situations doing that, but I didn't know what I was doing. I was dreaming, but I thought I was awake. It was very bad, very bad. And I was terrified.

Doctor, Why Is This Happening?

So I went to a medical doctor, and he did the blood tests, and he said that there was physically nothing wrong with me. Well, that of course only added to my fear that I was losing my mind. What else could be happening if I wasn't losing my mind? But everyone tried to convince me that I wasn't losing my mind. And my mom was like, "You're not losing your mind. If you're losing your mind, you don't know it." But I didn't believe her. They weren't inside my head. My head was crazy. I was seeing things and imagining things that weren't there. I was picking up things that weren't there. It just was not a good time.

So she made an appointment at a mental facility to convince me that I was not going insane. But I didn't believe her. I figured once we got there I would be in--not custody, it's not jail, but I would be taken away, because my mind was so crazy that I could be controlled or something. This is how afraid I was, and this very irrational fear came to me. So I figured I'd be taken away in a strait jacket, so I just accepted my fate. And we went to the mental facility, and they did a complete evaluation on me, and they said that I was in fact not losing my mind. There was nothing wrong with my mind.

So there's nothing wrong with me physically and nothing wrong with me mentally, but yet I was hallucinating? At this point I couldn't walk 20 feet without falling down. I had complete migraines every single day, but yet there's nothing wrong with me. I couldn't understand, and that started to become the real problem--not understanding or knowing what was wrong with me when I'm absolutely turning into a different person and being very sick. And this started to eat at my soul because I didn't understand the hardest thing is knowing how sick you are and not being able to know how or why you are. So at this point I just wanted to know what was wrong with me. Why were these things happening to me?

Me and my boyfriend at the time decided to move to Gainesville, and there's a hospital there that they recommended. My dad recommended it, my grandpa recommended it, and my boyfriend. So we decided that that's where we were going to go. So when we got up there, the night we got up there, I was feeling--at this point I couldn't even hold food down. I said, "We have to go tonight, because if we don't, I don't think I'll be here tomorrow." So we went straight up to the hospital, and we went to the emergency room and we had to wait. But then after waiting and waiting and waiting, I lay down on his shoulder and I fell asleep, and I wouldn't wake up. So he went up to the front desk, and he said, "I think my girlfriend is dying," and boy, they rushed me in then! The very first thing they did was a spinal tap. When they did the spinal tap, they realized that I didn't have any spinal fluid in my spine. So that being very odd, of course, they did a CAT scan of my brain, and that's when they found the tumor, and they still didn't know what kind of tumor it was. All they knew was that I had a brain tumor. And that's when they called my mom and dad in St. Petersburg, and that's a whole emotional story, but--so they came up.

They came up, and the next morning I was still in a coma. I was in a coma for approximately a week. I was still in the coma, so I wasn't aware of what was going on here, but they decided that they had to do an emergency surgery to see if they could remove the tumor if it was removable, or if it was cancerous, because they weren't sure. They just knew I had a brain tumor.

Undergoing Diagnostic Brain Surgery

They did the surgery, which cut me from the top of the middle of my head down to the bottom--the middle of my neck. Because I was in a coma, I had no way of telling them if I wanted the surgery or not. So they asked my mom and my dad. So they had to make that decision for me. They said it was the hardest, most emotional decision that they ever had to make, and I believe them. They said that they wanted me to have the surgery with one stipulation, that they didn't do anything if it would paralyze me or make me a vegetable.

So the doctor went to operate, and as soon as he opened me up, he knew he couldn't touch it. It was wrapped around my brainstem, and all my involuntary motions. So he knew he couldn't touch it, but he was able to get a small part of it to do a biopsy with. So they did the biopsy, and when they did it, they found out that it was lymphoma, which only two percent of all lymphoma originates in the brain. So it was very rare that it was a lymphoma, and if they wouldn't have done the surgery, they wouldn't have got a biopsy; and they probably would have treated me for something different and would have killed me. So I always call that my Irish luck. [laughs] The best and the worst, you know?

Lymphoma is very treatable. So that was my only saving grace at this point. They figured out I had fourth stage, B-cell lymphoma that originated in the brainstem. But I had an even bigger problem, which is what put me in the coma. The tumor was blocking all the spinal fluid from getting into my spine which was causing my brain to swell, and that was what was my immediate danger. That's what was killing me. That was what put me in the coma. That's what they had to deal with before they could even think about dealing with the cancer.

What they had to do was they had to drain the spinal fluid out of my brain. So they had a tube going into my brain and a bag that spinal fluid was going into, and I had to lay at a 15-degree angle for 24/7. I was not allowed to move; because that's the angle I had to lay in for this stuff to drip out properly so that they could start the cancer treatment. They were afraid of infection because of the cancer and everything else. They couldn't leave the tube in there for more than a week, so every week they had to do surgery and switch sides, from one side, the right side to the left side, right side to the left side. This lasted approximately four weeks, maybe four or five weeks, and when that was finally done, then they could actually start the cancer treatment.

So the first thing I had to deal with was the brain trauma. I had major brain trauma. I wasn't in an accident, but it was the same kind of thing if I was. They didn't know if I was going to live or die. So then after about a week, I actually came out of the coma, and they induced me back into a coma because at that point, they said it was so painful and so ridiculous that I didn't need to remember that. It just would have done me more harm than good to remember that.

So they induced me back into the coma for another couple of weeks. Once they stopped that drainage of the fluid, we were able to go on to the cancer treatment. So he did another full MRI of my entire body before he started the treatment, and the bad news was that I had gotten three more tumors in that one month because it was so aggressive. I had three more on my spine; one on the top of my spine, one on the middle of my spine, one on the bottom of my spine. That was very crushing, as you can imagine. So I had to deal with that, and I didn't deal with that very well, but what could I do? I didn't have any choice, so I just dealt with it.

Aggressive Cancer Calls for Aggressive Treatment

Then when they were coming up with a treatment plan, they had never really seen a case exactly like this in 1995. So actually six or seven of the top research hospitals, cancer research hospitals, got together, and they all discussed it. And that's when they came up with what they thought was the best thing to do, and they were honest with me, my mom, my family.

They said, "We don't know what it's going to do to her, but it's the only thing that we know to try, because to beat this cancer we have to be so aggressive because it is so aggressive." But they were honest. They told us up front they didn't know.

One thing that I remember saying to my doctor, [laughing] I asked him, I said, "Am I going to be an invalid, an idiot, you know, am I going to be stupid?" He goes, "No, but you might lose a few IQ points." And I thought that was funny. So I was like, "OK, I can deal with this." And it was basically like I didn't have time to stress over whether I wanted to do it or not. Like, do it and maybe you won't die. Don't do it and you will die. [laughs] So I really didn't have a choice, so I just had to deal with it.

They decided they'd start me on six treatments of--It was eight different chemotherapy medicines. It took four days to go through my body. So after the four days of going through my body, and the first time because it was so experimental, they wouldn't even let me leave the hospital. Well, I was too sick anyway, but they didn't know what it was going to do to me, so they didn't want me to even leave the hospital. So for those two weeks before I needed the next round, I stayed in the hospital.

The fourth cycle, I fell back into the coma, so they decided, well, I guess we're not going to do any more of those. So they gave my body a two-week break before they started the radiation.

They let us go--there is a hotel very close that they're sponsored by, so they let us stay there in this hotel that they had. They wouldn't let me live more than five minutes away from the hospital. It was just too critical. So we lived there, and the chemotherapy just totally wiped me out. I couldn't even get out of the bed. So basically, my mom took care of me, and she was wonderful. Absolutely wonderful.

From the first day that she came up there, the very first day when they got the phone call, she never left. She didn't go home. She never left. She stayed the whole time in the hospital. My grandpa used to live about an hour from us, so she was able to go there to take a shower or sleep if she needed to, but she never went home for seven months, the whole time I was in the hospital.

And if she wasn't there, I don't think I would have made it, because I'm a very, like, proud person, I guess would be a good word to say it, and she took care of me and did things that, not that I had a choice, but that I would have fought a lot more if somebody else was trying to do them for me. At one point she was feeding me, everything. I was unable to do anything. I was an invalid. So I know that her being there helped me so much, and I really don't know if I would have survived if she wasn't there.

And the other thing was my dad, because they still had three kids at home. So my dad took the role--so that my mom could be with me--as mom and dad at home, to take care of the other three kids. So it was just beautiful the way that they all worked together, and it was awesome, and I love them so much for it. So much.

So, they gave my body a two-week break, because I just could not handle it. So that two-week break was nothing. I had no chemo, I had no anything, except for they did put an Ommaya reservoir into my brain, and it's just a tube that goes directly to the tumor so that you can get chemo directly to the source. So they still did that, but they didn't do anything else but that. It really didn't make a difference to me. I was so sick that two weeks didn't matter.

And then I started radiation. So we moved into a place totally supported by the Cancer Society and Winn-Dixie. It was strictly for people with cancer going through radiation. This was a marvelous place. You might think that if you were living with a bunch of people that had cancer that it would be depressing. It was the opposite. It was the most positive, loving place in the world, and I'm so blessed that I got to stay there.

I remember the very first day, because you have to kind of make a mold cast of yourself. So what you do is you--they put this mold stuff in this, like, net stuff, and then what you do is you have to lay flat down and it molds your body exactly, so that every treatment, you are giving it the exact same spots because you're laying in the exact same position. So I remember doing that the first day that I went for my radiation treatment, and that wasn't very much fun, because mine was my brain, so I basically just had to get on my knees and fall into my place. And that hurt my head, or that hurt my body just to fall, because I didn't have any flexibility at this point. I was too sick, you know.

I had really lost a lot of weight. I was down to nothing, so we were very concerned about my weight. I mean, I was never big to start with. I was only like 115, 120 pounds, and I had gotten down to 80 pounds. So I started to gain weight, and we were all happy. Of course, me the happiest, because, like wow, I'm actually starting to get some weight back. And I was--every time I went to the doctor, I had a few more pounds, and so I was like, "Yes! Yeah!" Because I kept getting closer and closer to my ideal weight, or at least a safe weight.

And then we got there, and it kept going, and we're like--now I was starting to freak out. And I was getting--now I'm getting too big! I couldn't understand why was I getting big, you know, when I was going through cancer? So the doctors told me that it was from when you take this certain medicine--when you have brain surgery, you have to or else your brain will swell and you will go into a coma, which is the problem I had before. So they didn't tell me that the rest of my body would swell up.

I just kept gaining weight and kept gaining weight. It was just getting very unsafe. Now I was getting unsafe in the other direction, and I had these humongous scars all over my body, stretch marks from on my chest, underneath my arms, my legs, my stomach, and before it was all over, they extended almost down to my knees and to my elbows and my arms.

They said, "Well, this is not safe for her, and I think she will be OK if we take her off of it, as far as the brain swelling is concerned." But I began hallucinating again.

They had to put me back on the medicine. So they couldn't get me off the medicine, my body could not accept it, so I just kept getting bigger and bigger. By the time they finally weaned me off, I was up to like 180 pounds; 80 pounds to 180 pounds in a two- month period, maybe a three month period.

The whole thing was very terrifying, but throughout it I had peace. I really, truly had peace. An incident that happened to me one week before I went to the hospital-- when I was hallucinating and falling down and tripping over everything and forgetting everything, not even able to know what reality was every five minutes, and being terrified to fall asleep, not knowing if I'd wake up in some altered reality--we went to the river. My friends have a property on the river. I went out there, and I was sitting out there looking in the water, and I felt totally calm. I heard a voice, in my head of course, and it said, "You're very sick. You're very, very sick, and you're going to have to go to the hospital, but you're going to be fine."

I don't know why I heard that voice but the whole time I went through all this stuff I went through, I was never afraid I was going to die. I knew I wasn't going to die. There were actually times I wished I could die, [laughs] but that part I didn't write down. Say, "No, no! I don't want to go. I'm staying." But I felt, I mean, I was in pain and it sucked but I knew that I would be OK. So that was the one other grace that I had.

The other thing with the radiation was that the mask--the body mask that I had to lay into, that got a lot harder to do when I gained weight. I had to fall into it, because at this point I was so stiff. It was the steroids--it wasn't natural weight. It was just, I was so stiff, I didn't even barely move my body, and just getting in and out of this thing was ridiculous.

Then they do the radiation. And the radiation is really weird. I mean, it freaked me out. They put me in this thing, and then they all leave the room, and if anyone opens the door, [laughs] if anyone even touches the door, it goes off automatically. I'm laying here from minute to minute to minute, seeing this stuff doing it on my body, and everyone else is like coming in with gas masks. [laughs] It's like, "Whoa. Wait a minute! What are you putting in my body?" But you have to do it, because that's what you have to do.

So at this point, like a few months back before this point, actually, I wasn't able to walk anymore because I was just too weak. So that's when I got a wheelchair, and my mom basically rode me around everywhere. That was very--because I was such an independent person--that was unbearable to me to have to wait for someone to move me. I had a really hard time with that. Like I said, when you're in that kind of situation, you don't have a choice. You just have to deal with it or not. What's your choice? Which actually is probably a good thing, because if I had a choice--I don't know. [laughs]

Then they had these radiation treatments, and my radiation treatments lasted about three full months. I saw like two and a half cycles of people coming through the place that I was staying, because most people's radiation is only four weeks, or six at the most. But I was there for two or three cycles of people, because I had to go for three months.

Cancer-Free!

Then there was a point when, for some reason, my doctor said that he was going to do another MRI. I needed an MRI, and like, it was gone. Everything. It was all gone. I totally had no cancer. I was cancer-free! [laughs] I mean, it was beautiful. I didn't expect it.

So you can imagine, I was extremely elated to find out, and my doctor was extremely happy to tell me that I no longer had cancer. So I got to go home and spend Christmas with my family, and I had to come back up for a few last radiation therapy treatments, just to make sure, and then I got to go home! I was so disabled, though, but I was alive and I had made it through, and if I made it through that, then I can make it through the rest of it, so that's what I'm doing now. [laughs]

Then I was released from the hospital, and then my boyfriend who was absolutely wonderful through the whole entire thing, he came and visited me every single day. There was really nothing he could do, but he came and visited me every. Well, not every day, maybe he missed a day or two, I don't know, but almost every single day he was there with me, not the whole day, but part of the day. That meant so much to me, even though we're not together now--but just knowing that he was there every day and imagining our life together after I got well helped me to heal so much that we're still best friends.

But unfortunately we're not together anymore because of the person I was after the cancer. I was not an independent person like I was before, and he was just unable to take care of me. So we had to separate, but I have to give him credit for the whole time I had cancer, because people would just tell him, how can you bear that? How can you stay with her? And he would say, "What do you mean? I don't have any choice. How can I leave?" And that perspective just always blew my mind, so I have to just thank him so much for that, and so--but when I first got out of the hospital, that's where I went, and we lived in Gainesville in an apartment building.

My mom went back to St. Pete for the first time in seven months after that whole ordeal, and so we lived in an apartment, and at this point I was so sick. I mean, I was still so sick from all the brain trauma and the brain surgeries. I was still getting migraines on pretty much a daily basis, and I just needed so much care. I was still in the wheelchair. I couldn't stand up or walk. I could walk, but I had to hold on to the walls so I could like walk on the walls. That's all I could do. So one day, being an independent person, stubborn person that I am, I got really frustrated and I just told myself, "I'm not ever using this wheelchair again. If I don't ever leave this house again, that's fine. But I am not ever using this wheelchair again!"

And I didn't leave the house [laughing] for only a couple months, but I didn't use the wheelchair. I told myself to walk using the wall, because I was not going to be confined to a wheelchair. There's just no way, and it wasn't like a thing that was in my spinal cord. It was just that I was too weak. I had lost so much weight and gained so much weight and I just--and plus I didn't have good balance. So it wasn't a permanent thing, like your spine is messed up. I knew that I could walk.

So I started walking around the house and doing things around the house, and I never got in that wheelchair ever again, because I was not going to do that! My stubbornness helped me out. It's hurt me a lot in my past, but at that point, it definitely helped me out. So I have just been healing, and after about a year of living with my boyfriend, it became unbearable for me and him, so we just decided that the best thing to do was to break up.

So I came and lived with my mom, and that's where I live now, and they are so much better able to take care of me, which is what I needed at that point. I loved my boyfriend and he loved me, but it just wasn't working in that taking care of sort of way, and that's how I've been living the last three and a half, four years. So I'm healing, so I guess I'm done.

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