Talk Shows & Stories : Featured Stories : Jackie

Recorded December 12, 2001

Jackie's Story: Caregiver, Brain Cancer

Listen With 46 minutes, 26 seconds.

Username: jackiematz

A Caregiver's Love Story: A Husband with Brain Cancer

My name is Jackie. I'm 41, live in Florida with my husband and my two daughters. When my husband, Gary, was diagnosed with cancer, both of our daughters were in school. One was in eighth grade and one was in eleventh grade. It was very difficult for them to accept or understand the thought of their daddy even being sick, more or less having brain cancer. He's never been ill before in all of their lives. Both my husband and I have always been very involved with all of their activities in and out of school. Since my husband's diagnosis, both of our daughters have graduated from high school and both are attending college; one on a part-time basis with a full-time job, and the other going full-time in the medical field.

It all started in about October of 1996. I noticed Gary's behavior was changing, and actually, thought we were through. He kept denying that there was anything wrong, which left me perplexed and disturbed. He had then started laughing at stuff that I didn't think was funny and I thought was very inappropriate. When I asked him what he was laughing at, he would tell me that he was not laughing and that I was making it up. I thought he was being cocky with me to make me mad on purpose. This went on for about four months before his diagnosis.

It wasn't until January of 1997 that I ever thought he was ill. Once when he had a laughing attack, I asked him again, "What are you laughing at?" He responded at this time, "At all the little men running around in my head." That got my attention. Another time, at a very serious business meeting at our Baptist church, he was a deacon in this church, so he had to sit on the first pew with the rest of the deacons. Another gentleman was giving a financial report, and Gary busted out laughing, falling forward, like bending in half, sitting and slapped another man next to him on his back. That moment I thought I would die right then of embarrassment. I slid all the way down into the pew to hide.

The next day, when I was discussing this issue with my closest friend, Karen--who happened to be married to a very good doctor, and he actually was our family doctor--that I realized that I needed some kind of counsel. My girlfriend, Karen, had a lot to do with this. So I went to their home to discuss this with Dr. Paul in person. He finally convinced me, that he absolutely thought Gary was having neurological seizures. He told me it sounded serious and to take him to the neurologist and Paul recommended one. I went home and began to try to explain all of this to Gary. It took a long time and I probably didn't say it the right way, but he sure didn't understand. I was still leery he was doing this on purpose. He would not agree to go to the neurologist.

Again I went to Paul, this time to ask him what to do now. After a lot of counsel--I was very upset mentally and emotionally from all of this--I asked Paul if he would talk to Gary. He agreed. I truly don't know how that conversation went or what was said. I didn't rush him to find out what was said. I just waited a couple of days and then asked what he thought about what Paul said. We discussed this at length now, and I realized during this conversation that he was not doing this on purpose. He finally agreed to see the neurologist, but only after his ski trip with the youth group of our church. I agreed. This included our daughters as well and he wanted to have a good time before finding out something upsetting.

Finding the Tumor and Facing Brain Surgery

When he returned, the appointment for the neurologist was already made. We went to the doctor's office for the consult. The doctor was very interested and concerned and sent him for a CAT scan, MRI and blood work. The day he had the scans done, he went alone. We both were working stressful and demanding jobs, and I couldn't take the time off because the project I was working on deadline was coming up and I had to finish the project.

Later in the day, actually after his appointment, at work I received a phone call. It was the neurologist's office, and it was the doctor himself asking for me. I was real scared. He told me Gary had a tumor in the left frontal lobe the size of an egg in his brain. Immediately, I asked where Gary was, so he put me on speakerphone and I heard Gary's voice that he was right there. Apparently during one of the scans, one of the technicians notified the doctor and sent a copy of a scan to the doctor's office. The technician, before he got out from the test, told Gary to go straight to the doctor's office, so he did.

The three of us were speaking. I asked a lot of questions. I'm in the health care executive administration field, so I was very inquisitive. Later, Gary and I met at home and I was very frightened. He never lost his faith. He never was frightened or scared. The neurologist's office set up the appointment with the neurosurgeon for the next week. Went to the neurosurgeon and he immediately set up surgery. I thought the whole time to myself that this couldn't be happening to me. This has got to be a bad dream, but it wasn't, and I was in shock.

At the time of his surgery, which was the beginning of February, we had notified many of our friends and our church and our families. Everyone was praying and we had hands laid on him, he was anointed with oil, the whole congregation of our church was praying for him. My sister had put it on the Internet and had people praying all over the world. My family, his family, everybody was just praying.

The day of his surgery, there were so many people that came to the surgery to be with me and to support me that we had to take them down to the cafeteria. I was almost embarrassed that as many people had shown up. You see, my husband is also a clown, a professional clown and I just didn't know what to think of a lot of the people that were coming, because most of them were his clown friends. A lot of them were friends from church and old friends.

So we went to the cafeteria. I felt like I was a hostess at a party. We had this huge group of people. There must have been thirty of us. We were all sitting around in a circle, everybody talking to everybody, when Gary's best clown friend and his associate looked at me and said, "Jackie? Do you mean after all this time I thought Gary was funny, and it was only a brain tumor?" He said, "I'm really going to have to start analyzing people better." That really broke the ice, and I was at peace the whole rest of the time.

The surgery took about seven and a half to eight hours and by then I was very antsy. Many people had had to leave, and the surgery had extended longer than the amount of time that the doctor had said. After the surgery, the neurosurgeon came out of the operating room and talked to me. My family, my father, my mom, my sister and I went into this little consult room, and he began to tell us the news. He told us he had gotten as much of the tumor as he could; however, he couldn't reach it all and was not going to cut brain tissue to get to the rest of the tumor. So basically, he said that he did all that he could and couldn't get it all. So that was very disconcerting. We were very upset. He pulled through the procedure, and he was in the hospital for three days. The hospital--the doctor was amazed that he had healed so quickly.

So we came home. During the operation they had put the original cranium piece back on his skull. This particular cranium piece had been rubbed by the tumor and it was made very thin and it was questionable, however, the doctor put it back on.

Gamma Radiation and a Grand Mal Seizure

After the surgery, he went through very aggressive gamma radiation, which was the most updated technology that I've ever seen. It looked like the future--what the future would be like--the way that they did his therapy. It was just very, very extensive, and I can't even really go on to explain how pleased with the way that they cared for my husband and the way that they treated him, so to speak, in both the physical and emotional ways. They were very encouraging. They were very positive, and they told me what I wanted to hear. That they could make it go away and that he would be okay.

During the six and a half-week therapy of radiation Gary began to run a temperature, and he ran a very high temperature for several days. During this time I was in contact with the doctor. We were keeping a very close eye on him. By this time I had to take off from work to be able to stay with my husband. He ran this temperature for several days, took him back to the doctor, the doctor tried to pull fluid from the tumor site and to see if there was anything wrong inside, and nobody could find anything wrong. They did blood work. Nobody could find anything wrong with him. So, like I said, we were just watching.

One night, after I had taken him to the emergency room for the third time, I had even taken him to a different hospital, thinking that they would at least admit him due to the 104.7 temperature that he had been running. They wouldn't admit him because they said they couldn't find anything wrong with him except the fact that he was running this temperature.

I brought him home. Five o'clock the next morning, I was awakened to my husband having a grand mal seizure in the bed next to me. I had never experienced a seizure or even seen one on TV. Scared me to death! I immediately hollered, and both of my daughters came running in here, into the bedroom, and of course there was panic, and I couldn't even dial the telephone. My oldest daughter had to take the phone from me and dial 911, while my other daughter was trying to calm me down. We got 911 on the phone, and they told our oldest daughter, exactly what to tell us to do. We did it to the point where he was--it was a very violent seizure, and they told us to make him lay on his side. And every time we'd get him on his side he'd flop back the other way. He was like a fish out of water. So finally, as the seizure was passing, it was probably ten minutes, it was a bad seizure, my daughter, my youngest daughter wound up sitting on his hip, keeping him straddled sideways so he wouldn't flip-flop.

By this time the ambulance had come and the EMT's were in the bedroom. Gary is not real responsive to authority or to other men telling him what he can and can't do. So he got very violent with them, to the point where I finally came into the bedroom and I said "Wait, let me try to do something." So I came into the bedroom, and I looked at Gary and I said, "Gary, these guys are here and they want to take us to a party." I said, "And you ought to see this great big truck that's outside. You just wouldn't believe it." And I just kept talking to him in a very just sweet and loving tone and I convinced him to get up and walk to the front room.

In the meantime they had the stretcher in the hallway. So I was able to get Gary up, and during this time he was still in an unconscious state, the EMT's said. I got him to walk into the hallway, and I said, "First, let's have a seat here," and kept telling him about the big truck outside, and I just kept going on and on and on about the big truck. So I got him to sit down on the stretcher, and I said, "Aren't you tired?" And he said, "Yeah." And I said, "Why don't you just put your head down for a second." And when he lay down on the stretcher, that's when I told the EMT's to take him. They strapped him in and they put him in the ambulance. He was in his underwear, and my youngest daughter [laughing] kept saying, "Put pants on him. He's got to have pants on him. He's going to the hospital." And looking back, I find that to be cute.

Another funny thing at that time, when I look back was, I immediately called my girlfriend down the street, and Kathleen came to my house. She could tell the panic in my voice, and so she was at my house within seconds. In the dark, she had put her shorts on, and they were jogging pants and she had put them on inside out, and the whole white part of the cotton crotch was showing. And it was just so funny, now that we think back on it, but at the time nobody even knew.

Using Healing Music to Arouse the Spirit Within

He was in the hospital; he wound up with staph infection of the brain. They took him immediately into surgery. They removed the portion of the skull, the cap that they had put back on, where they had initially done the surgery. They had taken that piece of skull back out because it had been rubbed and it was so thin that it was infected, and the doctor wasn't aware of that at the time. Nobody was aware of it. So, they did surgery on him. They put him on vancomycin. He was on vancomycin for quite a long time. He was very lethargic. In fact, at this point I really thought that we were losing him, and I was petrified. The only thing I knew that kept me going was God.

The night that he had his initial surgery, after everybody had left, I went down to the little outside area where there is a little waterfall and a pond with fish. I went out there to smoke a cigarette. And being alone, of course, that's when I broke down. I prayed and I asked God to please give me the peace, the comfort and the strength to make it through this and for me to totally understand what was going on. At the time, I actually realized that I couldn't control it any more. I could not control the situation. It was totally out of my hands. I had given it to God.

So when he was in the hospital the second time with the staph infection, I was very much at peace, but was frightened for his life. The Lord had spoken to me, and I thought that it was absolutely ridiculous that I had even thought of this. I actually thought I had thought of it, but now we see that God had spoke to me and I'm glad I listened. What God told me was to go home, get my stereo and get some healing tapes, some praise and worship music and to play it to arouse the spirit within Gary. Gary, at this time, is still unconscious and they're monitoring him very carefully. He was on the verge of being put into ICU. They were questioning whether to do that or not. I begged them not to because I wanted to be there to comfort him, and being in ICU, he couldn't be comforted.

At this point we had talked about quality of life versus quantity of life. We, as a family, chose the quality of life. So I asked them to leave him in the room, which the doctor did, and I began playing. I brought the stereo to the hospital and I began playing this music. I also crawled up in the bed with Gary and just put my arms around him with my head on his shoulder, and just with an open mind tried to let the spirit of God flow through me, into him. About two and a half to three days later of doing this all day and all night, he began to come around. The doctors were amazed. They absolutely thought that he was going to die; that he was not going to come out of the coma. He began to progress really well health wise. He was still on the vancomycin.

Crash Course in Caregiving from Home Health Care Nurses

He was in the hospital for a week. Because during the radiation therapy that he was taking, which was interrupted by the seizure, he only had a one-week period of time that he could miss to be able to regain where he left off with his therapy, or he was going to have to start everything all over again and they didn't want to have to do that. So they let him come home. I took him back and forth, and back and forth with his therapy, with a lot of help from the staff at [the] clinic. I would stop at the front and get a wheelchair and carry him in. He was very weak. He was very ill. They continued the radiation therapy, however. Gary had a PICC line sewn into his artery and we had home health care nurses coming to the house. I wound up going out on short-term disability. At that time, they had taught me how to give him the IV medicine twice a day and all of his other medications; his seizure medications, his stomach medications. They taught me how to keep the wound clean, and how to look for infection and things of that sort. I kind of got a crash course in medical assistant.

So I took care of him here at home for weeks. It was probably six weeks that he was on that vancomycin, and he got well. He began to comprehend what people were saying. He, at all times, was not afraid. He just kept looking at me and the spirits within ourselves both knew that everything was going to be okay and that I was taking care of him. And he knew it. He knew who he was. He knew who our children were. He didn't remember a lot of people. He had lost a lot of his memory; totally lost sense of time [and] place. This went on for about six weeks when he began to come around. He progressed very well to the point where he was back working with the youth group at our church.

By this time, our youth group was getting ready to go on another ski trip up in North Carolina. My husband just begged and insisted that he go. He just begged me and begged me. I didn't know what to say. I felt as though, because at this point it didn't matter what he did, because we both wanted him to have the best time of his life. So I told him that if the doctor approved then he could go. Well, the doctor approved him going on the ski trip only if he wore a helmet because the place where he had the surgery, the surgical site, there was no cranium. He had a very huge soft spot on the side of his head. We called him slant head for a while, and it really kind of became a joke. At this point, all we could do was make jokes. It was the only way that we could make it through and continue with life in the quality type manner, which took a lot of prayer. We had a lot of people praying for us.

So I made arrangements and the four of us went along with the youth group on the ski trip. We had a wonderful time. Gary insisted that he ski. The fact that there was hardly any snow and that they were making snow didn't matter to any of the kids or to Gary. I was just basically there to husband-sit, but I wasn't letting him know that. I was acting as though I was a chaperon as well, but mostly as a chaperon because my husband was going and if something was to happen to him, I wanted to be there.

So we're at the ski resort. We get our skis. We get everybody fitted and everybody goes up, gets on the ski lift and goes skiing. Well, here's Gary. He's got his ski suit on and his skis, and he's trying to walk across the ice and the snow, and we're making a joke of it, and he did pretty well. And he went ahead, and he went over and got on the ski lift. Well, it seemed as though an hour had gone by, I actually wasn't watching my watch, but it was a very long time before he came down the slope. There was quite a few people there, and the one way that we could tell which skier Gary was, was because he had the big red helmet on. It was a motorcycle helmet. He made it down the slope one time, and [laughter] he came over, put his ski poles up, took his skis off, and said he was through.

Gary, being an experienced skier, was pretty disappointed with the fact that he fell about eleven or twelve times coming down the slope, and the fact that he was exhausted by the time that he got down the first run. We just kind of hung around the lodge the rest of the day while the youth skied. Then we went back to the cabin where we were staying. The rest of the trip was very quiet. Gary was very quiet and didn't participate in a lot of things, but his presence was there.

Doctors Create an Imitation Cranium

After that ski trip, during this whole time from when he went to the neurologist on, every six months he was having an MRI and a CAT scan done as a follow-up treatment. Gary at that time was concerned with the fact that he wanted his head [skull]. He was coming more around, and to the point where he was understanding and comprehending a lot better, and he had talked to the doctor and said something about him not having a skull. So the doctor said, "Well, you know, there's a spot in there that we want to look at. So this will be a good opportunity for us to go ahead. I can go in there, I can look at what I need to look at and resect anything that's in there, and we can put an imitation cranium on him."

So when we talked about what it was made of, my husband immediately thought it was funny and said that he had "Whammo Frisbee material" in his head, because that's the way he understood it to be, because it was like a hard plastic that was like a powder and that he added liquid to it and he formed the skull. I mean, I actually had hand prints of the doctor in my husband's head. That went very well. They put the skull on, and like I said, Gary went around announcing to everybody that he had Whammo Frisbee material implanted in his head.

Since then we've really appreciated what life really is. It really made me take a step back, and now I can understand why we had our children at such a young age. I was 18 when I had my first, it was kind of like taking a step back, and I could see the whole--the big picture so to speak. So we were really into the quality of life. We made frequent visits to my family, and Gary's family came and stayed with us. His mother stayed with us for about a year. His cousin came and stayed with us. His brothers came and visited, so we've had a lot of family in and out, and basically have had family living with us since.

Learning to Accept Help

At the time that we were going through all of Gary's problems, his medical issues, I was president of the athletic league here within our community, our housing community. And we have a league of girl's softball--oh I'd say about 75 girls that play softball. So I wasn't able to fulfill my duties down at the park due to my husband's health and I wound up giving the position up and resigning, to be able to spend more time with my husband.

At this time I was still working. I was back at work full-time. I had taken a promotion into the executive offices and was working for the chief medical officer of the company that I work for. It was a very demanding position. I would come home at lunch. I would make sure that Gary had his pills and his lunch, because he was unable to fix it. You could put all the food right there in the refrigerator, you could put it all out on the counter, and he would not know the order in which to put the sandwich together. He wouldn't know where to begin, so I would come home and I would make him lunch.

This continued for quite a while. I'd say probably almost 13 months; working a full-time job, coming home during the day, taking care of him after work, constantly calling him during the day. Gary and I both thought it was very important for the girls to have their teenage life, so we did not burden them with the medical issues of their father. They knew what was going on. We always kept them abreast of what was happening, but we never put any real heavy responsibilities on them. To me, it was important that they had their teenage years and their fun in high school years because they were growing up quickly.

Since then we've had a lot of people living with us, and at this time, like I was saying, I was doing everything on my own. I can honestly tell you that in a state of crisis, you can really tell who your real friends are, because your real friends aren't the ones that say, "Give me a call anytime you need me." Because when you would call them, even if they said that they would come over to help do something, they wouldn't show up.

So I basically had given up on everybody and had taken this whole heavy weight totally upon my shoulders--which I had already been doing but just hadn't been admitting it. And I finally came to the realization; I was very stressed at work. Gary's cousin was living with us at the time and he had to go out of state to take care of some legal business, and Gary was coming down with the flu. His cousin stayed with him for a week, but he wasn't well enough for him to stay alone yet, for the first time plus have the flu. So I wound up taking family medical leave for the next week.

Well, the next week after I went back to work, I cleaned my desk off. I knew I had some pending issues on my desk. During the time that I was out, someone else had come over and worked and done things at my desk to help my boss, which was very appreciated. That Friday, of the first week back, I was called into a conference room. In that conference room I was told that I was being written up for not having work completed on my desk, for excessive absence,--I felt like I was being accused of things that I was really trying to deal with. And in the paper, it states that I didn't have a caretaker for him which I did, it was his cousin. His cousin had to go out of town and I had to stay home.

There were several things that I disagreed with. However, I signed the write-up out of duress, and I explained that to them. I absolutely went hysterical and had a nervous breakdown right then and there in front of my boss and the senior project manager of the area that I worked for.

I wound up in the hospital. My daughters did then, at the time, have to take up the slack. A friend of ours, who was an umpire down at the ballpark--that's how we met him--he was always very nice. We've known this gentleman for probably eleven years, as long as I've been involved with the ballpark. He saw the stress that I was going through and he would always come talk to Gary and I. He would always do things with Gary and one day he said to me, he made me realize that I was not allowing people at this time to help me. I didn't trust people to help. So when he asked if he could help, I looked him square in the eyes, and I said, "If you don't really mean that you're going to help, don't even say it." He told me he was serious and from that day forward he has been Gary's friend, Gary's buddy. He takes Gary off and they go to Home Depot and they do the whole man thing and we just really try to make the best of Gary's life.

Redefining: Making the Best Out of Life

And the whole experience has brought Gary and I closer together. We realize that we're soul mates. That even something this traumatic wouldn't separate us. I was on the verge of leaving him before I found out that he was ill. Because, like I said at the beginning of this interview, I thought he was being cocky and I thought he wanted to get rid of me, because he never wanted to do anything and so on. So we've just realized that life is far more important than worrying about work and worrying about the hurry-hurry of the day, and this has got to be done and that's got to be done. We basically, now that I've been staying home, we've basically just been staying together. We do everything together. If I go to the store, he goes with me. But on his bad days I don't take him anywhere, because it's like sometimes taking a 7-year-old to the store and them throwing a temper tantrum. It's very embarrassing and very demeaning to Gary if I have to confront him or, so to say, discipline him in public. So I have at times sworn the fact that I would not take him anywhere with me again out in public, but I do it anyway. He has his good days.

The main thing that got Gary and I through, mostly me--I thought I knew God, but I didn't know God until I needed God, and unfortunately that's how God got my attention. But God gave me the strength and the courage and the peace. As soon as I prayed the night of his first surgery outside when I was smoking a cigarette, I felt the power of God. I even asked him to show me a sign that he was really in control. There was no breeze blowing. The air was very stagnant. Living in Florida is very humid and muggy. A breeze blew within this area, so I immediately knew at that moment that God was in control.

Gary and I have been married for 23 years, and like I say, we laugh about this experience only because we realize that life is far greater than things that are happening in the world. I told him that I forgave him of everything that he's ever done to upset me or make me mad because he couldn't help it, he had a brain tumor. And we still laugh about that one statement. When I said it I really kind of said it seriously, but after it was said, we both realized how funny what I had said was. And it was true. I had forgiven him of everything that he had ever done and I tell him to this day that I forgive him for everything he does because he can't help it, he had a brain tumor.

Recently, this past year, during one of his semi-annual scans, the neurosurgeon wanted to take a biopsy. They thought the tumor was spreading to the front center of the brain. So recently he had a biopsy done. Spent the night in the hospital and we were home. At this time our neurosurgeon says that Gary is in a stable condition. He will not call him in remission, because the type of brain cancer that he has is a very aggressive cancer. Everyone is surprised that Gary is not dead. The prognosis initially was that he would die within six months.

Blessings in Disguise

It's been almost five years post diagnosis and Gary is still involved with the children in the church. We have changed churches. He is working with the children's church now which are ages 7 through 12, and he goes to his meeting. The only liberties that Gary has--that I can feel comfortable with without him being watched over--is him walking from our house to our church, which is about seven houses away from us. We are very blessed that he found this particular church that he wanted to be in and that he can walk there. Everybody in the church, the pastor, everybody knows about Gary's condition. They also have been in on the prayer and actually they knew about Gary beforehand because it's the neighborhood community church. And the status that I held within the community at the ballpark made us noticeable, I don't want to say popular, but everybody knew who we were. We knew who everybody was. So Gary feels very comfortable going up to that church.

I don't go to the same church that Gary goes to any more. I was born a Catholic and I've gone back to my Catholicism. The joke about the reason I did that and it's the truth--but like I said, we try to make humor out of everything--is that I tell his church that I don't come to church with him, because if I did neither one of us would get anything out of it. I'd be smacking him telling him to hush because he'll be talking out loud and then he'll be giving me dirty looks and we will probably argue with each other which would disturb other people and would take away from what other people would learn. And we wouldn't learn a thing, so we'd be wasting our time and everybody else's time. So his church knows how he is. They accept him and love him for who he is and how his behaviors are. His behaviors have changed.

I have had to learn to accept Gary the way he is and love him for who he is and for the reasons why I married him. All of this has brought that back around full circle. At this point Gary has his little house out in the backyard. It started out to be a little shed, but it looks like it could be a little efficiency apartment. He has made a Murphy bed in there. It's the size of an efficiency apartment with a big 8-foot porch on it. So he goes out and he stays in his little domain, and he feels as though he is more in control of himself, which I allow. He always asks me to forgive him for going out there, but I let him do what he needs to have his life, too.

I know I've left a lot of things out. Gary has had to retire from the Federal government. He was with the Federal government for 21 years. He had to retire. So he is out on his retirement. I am out on sick leave with my job due to my nervous breakdown which--and I hate to say this--but in all actuality really winds up to be a blessing in disguise because I realize that I'm being able to spend this time with my husband. So in all of that, that's our story.

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