Terry: Fibrosarcoma

Listen With 23 minutes, 11 seconds.

Username: terryh

Go to terryh's personal Web page

Hi. My name is Terry Healy and I'm a 37-year-old male. I was diagnosed in 1984 with a rare form of cancer called a fibrosarcoma. I was a junior at Cal Berkeley at the time and was president of my fraternity, and I had pretty much lived life on Easy Street. I had been a high school prince and was my fraternity president, and life was going pretty smoothly. When I was diagnosed with the fibrosarcoma it took five weeks for them to give me the diagnosis, and a lot of that had to do with the fact that a fibrosarcoma is a very rare form of cancer, and a rare form of a sarcoma cancer. Just to provide some background, sarcomas represent about a half of one percent of all cancers to the best of my knowledge. So it's fairly rare, and part of the reason I believe that there isn't a lot of information widely dispersed about sarcomas is that they occur in all different parts of the body. So there isn't a lot of focus on necessarily how to treat them.

But, anyway, so when I was originally diagnosed with my fibrosarcoma, it was caught in the fairly early stages. It was behind my right nostril, and you could kind of feel it in my hard palate above my two front teeth. I was basically not too concerned about it because originally the doctor had diagnosed it as a pimple, if you can believe that, and I knew better than that, being a 20-year-old male who had had many of those. But I was patient and went back to the doctor three weeks later. They determined that it was a tumor or a cyst that needed to be excised, but it took five weeks to get the diagnosis, again because it went from one lab to the next before they were actually able to provide that diagnosis. So the shock of it all wasn't probably as great as a lot of people would experience getting a diagnosis of cancer, probably because I had started preparing myself after a few weeks, knowing that I didn't have a result, it wasn't a good sign. But I was able to go to the hospital, get the rest of the tumor cleaned out, and I was given a clean bill of health, and that was pretty significant in that I suddenly felt like, "Hey, I've already beat this cancer. This is no big deal." I didn't need radiation. I didn't need chemotherapy. I returned to school right away. Continued to kind of fall back into the old mode of things, and I looked like I had been in a fight maybe with someone but not something. I had a tiny little scar on my nose that healed. Everything was okay.

Six months later I had a recurrence, and the recurrence was pretty significant. The risk I faced when I was originally given the diagnosis was that fibrosarcomas are typically very aggressive. In my case it could be disfiguring and life-threatening. Given the way it was treated initially, I wasn't too concerned about that, but when I had a recurrence, I knew something was wrong. I had tingling sensations in my cheek. I could feel a mass in my cheek, and so when I went back to the doctor they reacted pretty shockingly in terms of what they were seeing. So I was sent to a Tumor Board for head and neck cancer patients. That Tumor Board was very interesting because I was examined by about fifteen oncologists, specialists, different types of doctors. And it was a very difficult process because their job was to examine me, make some recommendations, and move on to the next patient. So I definitely felt like I was a lab specimen in this environment. There was no communication except gestures and body language. So I saw shaking heads and things that really frightened me. That led to my doctor coming back into the examining room and telling me that this was a very serious situation that would require extensive surgery to remove the tumor, which they believed could have reached my eye, would probably result in the loss of part of my nose and cheek, and they didn't know what else.

Ultimately I came away from that surgery in October of '85 with the removal of half of my nose, muscle and bone from my right cheek, part of my upper lip, the shelf of my right eye--though they were able to save the eye--which was monumental, six of my teeth, and part of my hard palate. Following those surgical procedures I had 6,000 rads of radiation and 48 hours of iridium seed implants. I had some side effects from the radiation, nothing really significant other than getting thrush in my mouth which prevented me from being able to eat or talk for a couple of days, which turned out to be on Christmas day and Christmas Eve day.

At Face Value: My Struggle with a Disfiguring Cancer

But really, my story and what became ever more difficult for me in my recovery was the aftermath of the cancer, which was the disfigurement that resulted from it. So I decided ultimately, and I will talk more about this in a bit, to write a book about this experience for a number of reasons, and I'll talk about what really the core message is of that book. But the book is called At Face Value: My Struggle with a Disfiguring Cancer. It's written by myself, Terry Healey, and I have a web site, and I wanted to mention this early on as well as later, because for anybody that has sarcoma or disfigurement, I have tried to aggregate resources, sites, books and movies that might be relevant for people in those categories, as well as basic cancer information. So that site is www.at-face-value.com. So it's the title of the book, www.at-face-value.com.

So, anyway, to get back to the story, I had over thirty surgeries during the course of the following six years. Most of those were reconstructive in nature, and it really took that long to become content with who I was as a person. It took, however, a series of events to get me there. So there's no doubt that these types of things take time to recover from. And a lot of people ask me how I sustained myself through the surgery and the disfigurement that resulted from it, especially in this society that judges all of us so much by our appearance. And I attribute a lot of that to the incredibly supportive and caring family and friends that I had. They were amazingly optimistic. They kept their sense of humor. They made me feel good. But I also attribute a lot of it to my medical team.

I had an oncologist at UCSF who was an amazingly confident and competent man, who never expressed doubt that he would eradicate my cancer and reconstruct me back to the old Terry Healey. One of the things that he mentioned was that he would make me "streetable", and that term kind of freaked me out. I asked him, you know, "What does 'streetable' mean?" thinking to myself that 'streetable' would mean something like what I thought Tom Beringer looked like in the movie "Platoon". Where he had a big knife scar across his cheek and he actually looked pretty cool and heroic, and I thought that I could live with that for a while. But ultimately I came out of the initial reconstruction far from where I expected I would be, but again, I had confidence in my doctor. He believed that he would get me back to who I was, and I believed that. I believed in him, and you know, at every stage of my reconstruction, I was sent to the best and the brightest specialists, the best nasal reconstructive surgeon, the best cranial and eye reconstructive surgeon.

But I realized after having several procedures and not really seeing any great results that I needed to have another purpose, one that I could control, and so this is where some of the turning points in my life began to happen. And the first was getting that first real job, because you've got to remember that I was a senior in college when all this stuff was happening. So, completing all this surgery, graduating from Cal, doing all that stuff was somewhat of a purpose, but it seemed like the primary purpose was reconstructing my face. So a key turning point for me was getting that first real job. I was finally given a lot of responsibility. I had goals and objectives and I was contributing to society in a way that I felt was important. It was a valuable position that I had, and that was really the first stepping stone to helping me rebuild my confidence back.

Life suddenly changed

Following that, though, I continued to have the surgery because I was going to Chicago to a specialist, and there was a series of procedures that were required to complete this whole process of reconstructing my nose. So leading up to 1989 is when really another key turning point happened. So I was just kind of living my life and focusing on work. I didn't have an extremely balanced life for those few years because I didn't feel that good about myself. Life suddenly changed. People that treated me one way were now treating me very differently, and when I left the hospital for the first time, you know, the hospital made me feel very protected and insulated. The people there were used to caring for patients that had some pretty serious things happen to them. So I felt really good and protected there. The minute I left the hospital, though, is when I began to encounter the pointing from kids, or the giggling from teenagers, or people's jaws dropping in shock at the sight of me from adults. And those things over time really multiplied, and as they happened over and over again they began to have an incredible impact on my psyche and really affected my self-esteem and my confidence to a point where things weren't really improving.

But when I had had close to thirty surgical procedures and I was in a hospital in Chicago, when I was able to get up and walk to the mirror. I looked. I went into the bathroom and I looked in the mirror, and I realized that I had many new scars that had been created in an effort to reconstruct my nose and upper lip. So they had borrowed tissue from my forehead to replace the prior reconstruction that had been done to my nose. They were transplanting tissue from my cheek toward my upper lip, and I felt like, when I looked in the mirror I felt like I was taking two steps back for every step forward. The new scarring was making me feel worse about myself. I still felt like I looked like the elephant man as much as I had when I first woke up from this major surgery at UCSF in 1985. But in that same hospital on that same stay, I met a beautiful woman who had a great attitude, and she was a patient in the hospital at that time. We began to see each other after that, and we started having a long-distance relationship. It quickly became intimate, and the only reason that I mention that it was an intimate relationship is that it was significant to me in that it was the first intimate relationship I had had with someone who didn't know me as the old Terry Healey. So this was monumental for me in that respect.

And it felt so good to have somebody like me and want to be with me and be attracted to me. But after a long weekend together, she told me that I had a lot of issues that she didn't think she could help me with. I needed constant reassurance and she couldn't give me that. And what really she taught me was that the scars I'd developed on the inside were far deeper and far more disfiguring than the scars had ever been or ever were on the outside. So my physical appearance wasn't the issue really, but my person was, and that was an incredibly--it was a very devastating moment for me. But it was also liberating in the sense that it put things in perspective and helped me realize that I needed to do something about it. I needed to find psychosocial support.

So I began looking around and eventually came across the Wellness Community in the Bay Area, specifically, in the San Francisco Bay Area in Walnut Creek. And the Wellness Community provides support services for cancer patients and their families. When I went to those groups, people in my group were inspired by my story and thought I should be proud of what I had been through, how positive I had managed to be throughout the whole process. And it was there that I began to realize that actually I had a lot to offer other patients who at first seemed very concerned about things like losing their hair, or gaining or losing weight from the chemotherapy. So suddenly they realized that those types of things maybe weren't so important and were minor in comparison to what really mattered, which was living your life and accepting yourself for who you are, which is really part of my message. We have to become comfortable with who we are as people before we can really move on. So I really felt like those sessions helped me tremendously because I felt like I could help other people. So that was pretty significant.

What gave me strength

But throughout the process, you know, there were some key things that gave me strength that I really relied on heavily to keep me going, and there were a few different things. One was my faith in God. I was born a Roman Catholic and always found that my faith really helped me in a lot of ways to continue to be courageous and really give me the strength to get through some of the tough times that I was dealing with. Another one was really the family that I had, the support structure that I had from my family. They were very positive and optimistic, and maybe they shed tears in the background but they never showed that to me. So that made me feel good. I had great friends who were with me through the whole process. The group therapy really helped me. To be in an environment with other cancer patients who could be objective, who didn't know me, because after a while you want to talk to people outside of your family, get that other perspective.

Visualization was something that I employed. And, you know, these are good tools to employ, regardless of whether you have cancer, at any crisis point in your life or stressful period of time. I found that visualization was very powerful for me, and I can recount one or two visualization exercises that worked for me. One was, I used to backpack a great deal, and I used to backpack in a place called Trinity Wilderness Area near Mount Lassen in Northern California. I had fond memories of it and I could recall some of the beauty there, and so I would go to bed at night and I would visualize myself standing under this mountain waterfall and standing there with this cool clean mountain water pounding on my head, and I would just imagine that it was cleansing everything out of my face, my head, my whole body, and washing it out my feet and going down the stream. So, kind of this blessed water moving downstream and those kinds of things really calm me. They help me relax and they are very positive ways for me to visualize.

Striving for balance was the other thing, I would say, that took a while for me to master, but I think I finally found it, and that is just basically making a conscious effort to try to have a balanced lifestyle. So it's the way we eat, it's getting enough sleep, it's exercising, it's having a purpose, you know, and whether that's working or volunteering or anything, it's just having a purpose. Something that gives you goals and objectives, or your own self-imposed goals and objectives that enables you to kind of focus on things. Because I think that aspiring in anticipation is one of the greatest gifts we have. Looking forward to things is what makes us want to go on. So that was really important for me.

I guess from there I would like to shift to really what's my message and what's the lesson, and this kind of relates to the book that I came out with, again called At Face Value. The book was just released in August and I'm getting really positive response because it's an inspirational memoir. It's not just about cancer, but I think it's something that can help a lot of people, and really the message I am trying to convey is that none of us should judge a book by its cover. We all need to be less judgmental, and as I said my story is not about cancer or even disfigurement. It's a much broader issue for society to think about. It's for people that have weight problems. It's for people that feel discriminated against based on the color of their skin or their sexual orientation. Whatever it is, we all need to look beyond appearances and look deeper and give everybody that chance.

Final turning points

You know, one of the final turning points for me was meeting my wife. We had two dates before she even asked me what had happened to me. That told me a lot about her. She didn't really care what had happened to me. She was interested in who I was as a person. I thought I could recount one particular situation that I learned from, and that was that this whole message that I'm trying to convey I think is important. Through the whole process I was as guilty as other people in making judgments. At one particular point when I was coming back and forth from Chicago I had bandages that would cover a big part of my face, my nose and part of my cheek, because they were open wounds. And so one night I went out with that bandage on, and originally I thought that having bandages would be something that would protect me. People wouldn't notice my deformity, but what I found was bandages actually open up opportunity, I think, for people. People look at you and say, "Wow, this is temporary, so I can ask him what happened to him."

But, anyway, I was sitting in a bar one night, and this older gentleman who was sitting next to me--who was actually half drunk, I would say, and this was actually a pizza parlor--but I was sitting there at the bar having a beer waiting for my pizza, and he looked at me and asked me what in the hell had happened to me. And, the way ... his tone of voice really shocked me, so I made a judgment that he was drunk and that he would not want to hear the truth. So my next question to him was, "You want the truth? You want to really know what happened?" And he said, "Yeah, that would be great!" So I proceeded to tell him that I had been a D.E.A. agent who was working with border patrol agents in Texas monitoring and surveying drug runners coming across the border. Out of nowhere there was gunshot and a bullet pierced through my cheek and nose. And I had since resigned from the Agency and had made an effort at this point in my life to reconstruct my nose. And his response was overwhelming in terms of, I don't know, his feeling for me. He thought I was a hero, and he thought that I was everything that America stood for and that I was trying to do great things, and that he admired me and I was courageous and all these things. It kind of made me feel guilty because I thought, you know, telling the truth is much more important. But I was too far along at that point and he was eating it up. So I kind of let that episode go on. I'm sure he told all his buddies about me because he was fascinated by it, and we ended up talking for a long time about it. But ultimately, that experience told me very clearly that we all need to be honest with people and tell people the truth. That's the only way that people can learn from all these things. So today I make a conscious effort to tell children and to tell adults exactly what happened to me so that they hear the truth from the outset. And I think that was one of the reasons I wrote the book, and I think for anybody else that's a writer or enjoys just writing in a journal, it can be very liberating and it can be very therapeutic to do. And it certainly was for me.

One little thing that I thought was interesting is that all the scarring that I developed on my chest because of the fact that they had removed part of my deltopectoral tissue to create new tissue on my face in the form of a free flap. They actually take three layers of your skin and attach it from your chest to your face so that it develops its own blood supply. Well, when that was put back on my chest, it left me with some pretty severe scars, which left me very insecure about that as well. So I stopped taking off my shirt in public places and that kind of stuff. I found that when I released the book, it was almost like giving birth--though I can't relate to that exactly, that kind of thing--where suddenly I felt proud of everything and happy to be alive and thankful to be alive and thankful to be who I was. I remember a couple days after the book came out I went for a run, and its summertime, in August, very hot, and I used to wear my T-shirt. I didn't even put my shirt on when I went for my run, and I was about six minutes into my run before I realized that I had forgotten my shirt. It was kind of a proud moment because it made me realize that, you know, I should be proud of this. I shouldn't be intimidated by anybody. I shouldn't be insecure about it. So that's just a little tidbit.

You know, today I am very happy. I'm happily married. We've been married for seven years and I'm married to the woman I described earlier as a key turning point for me. And now, I run my own business so I can really maintain a balanced lifestyle. I run a marketing, business development and business strategy consulting company called Iron Horse Ventures. And between that and my book and everything else, I feel like there's a lot of good things happening. I'm thankful for every day. So, if you are interested in getting more information from my web site, other resources or books that might be helpful, including my own, feel free to go to www.at-face-value.com. It's also available at Amazon or other locations.

Thank you very much, and I hope this was helpful to somebody. Bye-bye.

Help |  About CSN  | Legal & Privacy Information