Lynne's Story: neuroblastoma and osteosarcoma

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Lynne: two-time survivor

Hi. My name is Lynne, and I am a 32-year-old female, and I've survived cancer not one, but two times. I'm gonna tell you a little bit about my story. When I was sixteen months old, I was diagnosed with something called a neuroblastoma, which is a form of childhood cancer, and my mother actually found a lump when she was changing my diaper, and wasn't sure what it was so took me to the pediatrician. And it turned out to be a neuroblastoma and I was treated with chemotherapy, radiation and surgery. My chances for survival were not good. Back then radiation was still at the edges you know still being a clinical trial, they hadn't perfected it yet. The type of cancer and the size of it was not good, so they basically told my mother I probably had 3 to 6 months to live. My mother is a very religious person so she prayed a lot, took me to healing masses, and she also took me into Boston and I was treated at one of the major Boston institutions, so I was very fortunate and survived. So that's my infant story.

But when I was 13 years old I was diagnosed with osteosarcoma, which is bone cancer. I had been experiencing pain in my right leg and kept going back to the doctors and they couldn't seem to find anything wrong with me. They actually went so far as telling my mother that I needed a psychiatrist because you know I needed some extra attention and I was regressing back to when I was a child and wanted the attention of when I had been in the hospital. So my mother just kept taking me back, and finally they found a very small spot on my hip that they gave fancy diagnostic name to, and told us that we didn't need to worry about it, it may have been caused by radiation and wouldn't be cancerous. So we asked for a second opinion, and because we were again fortunate enough to be treated in Boston, received nine second opinions from some of the top bosses at that particular hospital, that all decided to use the "watch and wait" theory.

The second time

When I went back in a couple of months, the small site that they had discovered had turned into probably the size of a golf ball, maybe a little bit larger, and turned out that it was bone cancer. So immediately they brought me to the hospital to have a biopsy and they went from the little site being nothing to being terminal bone cancer. And they wanted to amputate my right leg and told my mother, again, for some reason, that I probably had 3 to 6 months to live. 3 to 6 months seems to be the theme for some reason with me. And obviously they were wrong both times. I was fortunate enough to be diagnosed at a time when they were just perfecting instead of amputations, ways that they could remove pieces of bone or replace pieces of bone and still have people keep their limbs. And so I was brought to an orthopedic doctor who had been one of the pioneers in this and had perfected it. And what they did for me was rather amputate my leg, because it would have been from my hip down, they removed what is called my "ilium". And if you're familiar with the skeleton, it's the bone that looks kind of like a wing. So they removed my ilium and put a bone graft in, because there was a big space there, which in turn got infected, so they ended up having to remove that. So, not only did I beat the odds of fighting cancer, I also defeated the odds of never walking again. I had to learn how to walk all over again, and they had determined that I would never walk without crutches or walk without a cane, because of all the pieces of bone that I had missing. In fact, then I wasn't as nice as I was now. You know, I was a renegade, I guess is the nice way to explain it. But everything they told me I had to do the exact opposite and told them that they were absolutely crazy if they thought I would never walk again , and pushed myself and pushed myself, and today I'm walking without the aid of crutches or a cane, and I do still have my leg, and feel very fortunate for that.

Beating the odds

I wanted to talk a little bit about what it means to be a cancer survivor, to me. I know it's different for everybody else and because I was so young when I was first diagnosed and treated with cancer, it was interesting. I always grew up knowing I was different, but I could never quite put my finger on why I was different. I had a perfectly normal, happy childhood, wonderful mother, very supportive, and I was very happy. But I always knew there was something about me that was a little bit different, and really couldn't put my finger on it. I think it had something to do with my being so young when I was treated and hadn't really matured enough to really quite understand that. I had beaten the odds and I was very lucky to be alive.

When I was diagnosed as a teenager, I handled it in a quite different way because I was older. And being a teen, I grew up in an inner city, so it's not only struggling with fighting cancer, I was also struggling with trying to remain cool and not miss out in high school and trying to stay as normal as I could. So I actually didn't acknowledge the possibility that I could die. Actually, nobody actually bothered to tell me anyway, because back then they didn't tell teenagers much. The parents were the ones that got all of the information. And I actually was told that I had been terminal in my chart, which was about a year and a half later, when I read that they had given me 3 to 6 months to live, so I thought it was absolutely hysterical, that they were way off. But anyway, what I'm trying to get to, is when I was thirteen, after I finished treatment, I was very fortunate. I've talked to a lot of survivors of adolescent cancer, and now realize how lucky I was. My friends were very supportive, they came to visit me every single day, they were there when I needed them, I got to go out when I wanted to, they would come and pick me up and so I had a very, very strong social network. And a lot of children that I speak to that have been adolescents, experienced problems where their friends where afraid to talk to them because they were afraid to talk about cancer, and did not act with them. So I was very fortunate in that way.

From shame to pride

But I was not always comfortable being a cancer survivor. I was actually ashamed to be a cancer survivor for a very, very long time. It was something I was embarrassed about. It was something that I didn't always share with people, and created all of these wonderful stories. I limped because the bone was missing, so obviously I couldn't hide that, but when people would ask me what happened, I told them everything from, "I was in a Moped accident" to a water skiing accident. Sometimes I would tell them I was in a skiing accident. So, it depended on who the person was whether or not I shared that I was a cancer survivor. And it really wasn't until I went to college that I started to realize that being a cancer survivor was something not only amazing but something to be very, very proud of. And that I would be a very different person and a totally different person if I hadn't had cancer. And people that hear me talk sometimes think I'm crazy, but I honestly wouldn't trade having had cancer for anything in the world. Not that I would want to be terminal again, or have chemotherapy, and go through everything that I went through, but cancer truly made me who I am. It made me see things differently than how my friends see thing. I see life in a much more positive way than I probably ever would. Every day is truly a gift to me. And I try to remind myself that, every single day, that I am very, very lucky to be alive, and to enjoy life to its fullest.

When I was in college, what happened was I had to meet a whole new group of friends, and, depending on my comfort level with them, some people I shared with I was a cancer survivor and some I didn't. But it so happened that the college I went to, U Mass Amherst, had this particular class called, "microbiology of cancer". And it was one of the most popular classes. Everybody wanted to get into that class because of the professor, L.B. Reiner, who was wonderful. He not only talked about the microbiology of cancer but also talked about other things related to cancer and non western tradition types of ways of looking at handling cancer, so he would have people that practiced accupuncture come and speak. He had a woman who could diagnose illnesses with psychic powers, He had all different kinds of speakers. It was actually a great class, and I begged Professor Reiner to let me into the class, even though I wasn't a junior or senior because it was saved for only juniors and senior. It was a very large class and he knew I was a cancer survivor, I did share that with him. I also thought I would pass the class, having had cancer, that it would be breeze for me, and boy was I wrong. I mean, having cancer is not anything like knowing all the microbiology of having information about cancer. But anyway, I had a long conversation with Professor Reiner, and he had wanted me to speak to the class about what it meant to be a cancer survivor. I told him I just couldn't do it. There were too many kids in the class and I really wasn't comfortable speaking to a roomful of people about having had cancer, and I really didn't think I could do a good job. And he told me that was fine, it was my decision, and he totally understood that. But he felt that I was underestimating myself and he thought I had a lot to offer to the world because of my experience, and basically said I was the person I was because of everything that I had been through.

And that was really the first time that I thought about being a cancer survivor, and I thought about it a lot after I had that conversation. I regretfully never did speak to his class, and wish that I had, because now I really enjoy public speaking and talking and am very open about being a cancer survivor. But I started to change in college, and I started to reflect and realized that being a cancer survivor was a gift. Like I said earlier, it made me who I am and what I am, and helped me get grounded and realize the important things of life. And I really hadn't looked at cancer that way, as a positive impact on my life, because I always looked at the negative impacts on my life. You know, I went through all the different phases of worrying that nobody would ever marry me because I limped and because I'd had cancer, and because I was unattractive because of my limp and people were afraid of cancer so they wouldn't want to come near me. I had a lot of fears, and when I was in the hospital, I actually had a friend, Tommie, who unfortunately passed away, but Tommie was my best friend. He was also a bone cancer survivor and we made a pact in the hospital that we were just gonna marry each other, because then we wouldn't have to worry about the dating scene. We wouldn't have to worry about ever being married and finding someone to love us, and because we understood each other and understood what each of had gone through that we would just marry each other and avoid the whole situation. And when I think about that now, it makes me very sad that I would even think the thought that no one would love me because I had had cancer. But I was thirteen back then and didn't have the understanding or the maturity to understand that it was a gift. And I wish Tommie was alive today so I could share all the good experiences, the wonderful experiences, and the wonderful people that cancer has brought into my life.

My family

I am married, I have two step children. Stephanie is nine and Timothy is eight, and I couldn't ask for a better husband than my husband, Steven. Steven is really, I dated a lot when I was in college and high school, but Steven is the first man that ever met that I was completely honest from the very beginning about being a cancer survivor. I just knew that he was the one and that he would completely understand. I wasn't afraid to tell him for the very first time that I was a cancer survivor. Intimacy was never a problem with my husband from the very beginning, and I have a number of scars all over my body, in the hip.

It never was an issue for me worrying about Steven at all. And he's very, very supportive. And if you had asked me fifteen years ago if I ever thought I would be married and have children, I would have told you no. I can't physically have children, so I also thought nobody would ever want to marry me because of that reason, because people would want to have their own children. And I also didn't think people would love me because of the way I looked. Now I'm old enough and mature enough, I realize it's what inside that counts, and it's who I am that is what matter and not the way that I look. So, cancer has really, you know, enriched my life in that sense.

Evolution of the Cancer Survivor movement

I also meet so many wonderful people that are cancer survivors and family members and caregivers, that truly amaze me. So many different people, and people rise to the occasion and I've made unbelievable friends and have seen unbelievable acts of courage on the parts of people and the physicians and the nurses and you know the staff of the American Cancer society. Everybody who does something for cancer to me is providing life to other people. But I really was embarrassed to be a cancer survivor. And I was treated in that the medical community also didn't help you become a cancer survivor. You now, they didn't talk about the positive impact that cancer survivorship had on one's life. They didn't even talk to as a cancer survivor or as an active participant in your treatment, it was kind of an "us-them" mentality. They were the doctor, you were the patient, and you did exactly as they told, which is why I alluded to the fact that I was a difficult patient. I still am a difficult patient and I take great pride in that, but I was far ahead of my time when I was a teenager. I fought them tooth and nail about everything. I wanted to know everything, and the reasoning behind everything that we were doing. I had permission to read my chart when adults didn't have permission to read their chart, because I would just go and take it and read it, because I felt it was mine. It was my right to read what was going on, and my doctor happened to agree with me. So I'm very fortunate to have wonderful, patient doctors who understood where I was coming from.

But the momentum of cancer survivorship hasn't even begun back when I was being treated. You were not considered a cancer survivor until you reached your five-year statistic and you were off treatment for five years and cancer free for five years. Then you became a cancer survivor and you became basically a medical statistic for five years and cancer-free for five years. And then you became a cancer survivor and you became, basically, a medical statistic, and then that was it, they forgot about you, unless they wanted to put you on their annual report as a success story, or when you went back for a checkup once a year. And the wonderful thing today about the cancer survivor movement, is that back then there weren't as many people surviving cancer, so there was a voice, but it wasn't a very loud voice. Now it's over eight million cancer survivors in the United States alone, we have a voice. And working together to make a difference and the empowerment that that happens truly is bringing cancer survivorship to where it belongs. The shift from being off treatment to being a cancer survivor is amazing. Now from point of diagnosis throughout end of life, you're a cancer survivor. And I've always said that, since I was a child, that even though I wasn't in treatment, I was still a cancer survivor. I still have some effects from the cancer treatment. I have what they call "late effects" and I deal with chronic pain and early menopause because of estrogen, and have a whole range of different things wrong with me, but and I'm sure I'll have more things to deal with as I get older. But it doesn't really bother me because it's all a piece of why I'm alive. And I always try to take a positive outlook in dealing with life and being a cancer survivor. And I try to tell people that being a cancer survivor is just one piece of me, and I think sometimes people tend to forget that. Especially if you're in treatment, people try to look at you as a cancer survivor or the cancer patient, and they forget I'm many other things. And when you're fighting cancer, you don't just drop everything else that you are. I'm still, when I'm in the hospital, I'm still a stepmother and still a wife, I'm still a friend, I'm still someone that likes to read, I still have all of the hobbies; cancer is just one piece of me. I try very hard to teach people that cancer is just one piece of them and it makes them part of who they are, but it's not the only thing, the only positive thing about them.

My advice for you

I wanted to talk a little bit about some of the experiences I had when I was in the hospital. My biggest piece of advice would be I guess to embrace the help that others might begin to offer you. And what I mean by that is I'm a very strong-willed person, and I always have to do things for myself, which is probably one of the reasons why I can walk and why I'm still alive, but it's taken me a very, very long time to accept help. I had always given my mother a very hard time about helping me when I needed it, and I was always telling my friends that I didn't need to talk or I didn't need help, or, even with my husband. He always tells me I'm stubborn, and he's absolutely right, I am. It's part of who I am, but I guess what I would say is, when you're newly diagnosed, people will want to help you and you really decide what type of help you really want to accept and what type you really need. Not take it in the wrong way as I sometimes did, that they felt that I was incapable of doing things myself, it really truly is because people love you and really want to help and do whatever they can to help you beat the disease.

I think a lot of time I probably wouldn't change being the cancer patient to being a caregiver or family member because it sounds strange. But I've talked to a lot of family members and a lot of caregivers, and even though they are there for us and there for the person, there's almost a feeling of helplessness because we are actively fighting the disease, you know. We're taking the chemotherapy or having radiation or surgery or whatever it might be we're doing to actually fight the illness, and it's something physical that we know we're actually doing something to the cancer and we're fighting it, and sometimes caregivers and family members don't have that peace. You know, they can help us take showers or be there for social support and we know that they're helping us, more than they could ever know. But sometimes they feel like they're not doing what they should be for us, so it's a very delicate balance, and it did take me a very long time to be willing to accept help. And I wish now sometimes that I'd been a little bit more open to accepting some help from my family and friends. It probably would have made it a lot easier on them. I always jokingly refer to myself as the "B" word I guess is the best way to say it, and truly believe it but a piece of me because I can be so testy when I'm ill, I guess is a nice way of saying it, is one of the reasons that I survived so well.

Be an active participant

Every case is different. Just because the person sitting next to you has the same type of cancer, it doesn't necessarily mean the same things are going to work for them that work for you. Your personality is much different. While some of the treatment may be the same, what works for you personally might be very different. Ask questions. It's okay to ask the doctor a question and to ask them why they've come to a certain decision. Doctors all have e-mail now, or most of them do. Ask them if you can e-mail them questions if you're not comfortable asking them questions in person. Make sure that before you go to the appointment, you jot down things that have been bothering you that you want to ask so when you get in there, you don't forget. And try to bring someone with you whenever you possibly can, especially if it's a doctor's appt, to hear what the doctor has to say. This way if you're not absorbing everything, if someone you can count on is taking notes and been able to listen 100% and not get emotionally distraught at different times.

I would also say talk to as many other cancer survivors as you can. We're living examples of success stories, and know all of the tricks. About dealing with nausea or helping you know with bedsores and the different things. I also suggest laughing. Laughing is wonderful medicine and if you can't laugh at some of the things that have been happening to you, then you're probably not going to deal with it as well. So, laughter is a wonderful tool. Journaling is absolutely wonderful as well. I journal now but I did not when I was going through treatment as a teenager, and I really wish I had. Journaling can help you see if you start journaling when you're diagnosed, you will be able to see the progression that you've made just by looking back in the journal, and a lot of times you don't even have to read it. Writing down fears and things that you want to do with your life, and getting things out of your system and just jotting it down helps tremendously. You need to do what's best for you. You can either read it later or put it away or do whatever you want.

Positive advocacy

But the most important thing is be a positive and active advocate for yourself, and if you're too sick to do that for yourself or you're not feeling well, find a partner and find someone that can help you be an advocate. Don't be afraid to tell the hospital that you want to speak to a social worker, not every hospital automatically will assign you a social worker and if you need help getting resources, you know, there are other avenues beside the hospital that can provide you with that. Obviously the American Cancer Society the Survivors Network. I'm so excited about this network that I can't even put it into words. I think it's going to provide an opportunity that has never been provided before for people, that they're going to be able to meet and touch people's live that they've probably never in a million years had the access to. And the wisdom and the collective, the collective wisdom and the collective energy and positive impact that the CSN is going to be able to provide to people probably could never be measured. People that traditionally don't like support groups or aren't outgoing, can even just sit back at their computer and just watch chat rooms or look at information, and don't have to participate unless they want to. And then if they do participate it's from the privacy of their own home. Just listening to this tape recording, you're making a positive impact on your life by looking for other non-traditional venues to help yourself.

So, be an advocate for yourself, and as I said, talk to as many survivors as you possibly can and caregivers and family members, and if you're the type that likes support groups, I would highly recommend you go into a support group. And um, really give support groups a chance. Sometimes the semantics of the group might not fit for you so you might want to talk to a group leader or investigate some other groups but there's a lot of new types of support groups and wellness communities and different pieces that are out there. And I also was not a support group type when I was treated, even though there were a few of them for teens back then. And um, because hopefully I've Matured I probably would definitely go back and do a support group because I do think it would have helped me emotionally.

Important issues for Survivors

I dealt with survivor guilt, which can be difficult at times. Even though I'm 32 now so it's been you know a number of years since I was 13, I still at times, although I don't dwell on it, wonder, why, I survived. and Why some of the close friends I had in the hospital, who actually had better odds, and better you know, statistical odds, I should say, than I did for survival because of the types of cancer they had, the terminal and still living, there has to be a reason for it. And I still think about my friends, Tommy in particular, among the others that had such great things to offer the world and did have such a high success in treatment. And then you know ended up not winning the battle and, really grapple with the fact that I'm here and they're not and try to take a positive outlook. I believe that I'm here to make a difference and to help other people who are fighting cancer and who are dealing with longterm survival issues. It's my passion, it's one, anybody that knows me knows my passion is fighting cancer and empowering cancer survivors and working you know I'll do anything in the cancer community, I've never forgotten those people that have gotten me to where I am and have made me comfortable in my cancer survivorship and proud of being a cancer survivor, it has made a tremendous difference.

But you know, sometimes I get tired. Sometimes there are days when I get up and I'm dealing with chronic pain and I go through the why me whine fest sometimes. Although I try not to do it often, there are times where you know things will hit me the wrong way. I'll cry or I'll think about my friends, and you know, I've learned that that's okay too, I can't be a wall all of the time. It's taken me a long time to be comfortable letting down my hair and admitting that sometimes things are difficult for me. It's very difficult to be an example to other people. It's very difficult to be you know always the positive one and always the survivor that does so well and excels and everything, even with my family and friends, if I happen to have a bad day and I'm crying or I'm upset or I'm in so much pain that I don't want to deal with it, you know, everybody around me collapses, it's Oh, no, Lynn's falling apart, what's the matter? Because I'm always the strong one and sometimes that can be a burden as well always being the strong one and always being okay. And I've learned that in order to get to the point where I need to do what's good for me, then it's okay to have these days sometimes. For a long time I felt very guilty if I wanted to cry or if um I needed some extra help from the hospital. I think I was more upset at the time when I had to start going to a pain clinic and take pain killers, to help deal with my chronic pain. I was actually more upset for the fact that I had to take pain medicine and that I had to go and get extra help and that I couldn't handle pain on my own. That was bothering more than you know that I had nerve damage that I was going to deal with chronic pain for the rest of my life.

I felt like I was letting everyone who knew me down, especially my doctors, because I've always excelled at being you know the patient that's beating the odds, and was distraught about taking a stupid pill. I've gotten over it, obviously, but you know it's tough sometimes being the one who's there for everybody else. Not that I would change it for anything in the world, but I guess my advice is for people to be comfortable you know letting their hair down sometimes and realizing that you're only human and that you can't be positive 24 hours a day 7 days a week. That you always should try to be positive but if you need to take a day for yourself and if you need to take a day to just lay in front of the TV and watch whatever it is and relax and give you some you time, then do it. Um. I guess some other advice I would give to people is that your relationship with your doctor is extremely important and if you find that they don't value the partnership, you need to have a heart to heart conversation with them. And don't be afraid of getting second opinions. Don't be afraid of looking at other venues of treatment and looking into complementary types of therapy like yoga and stress relaxation there's a lot of ways out there now to help you deal with stress and nausea and they call it complementary therapy because it complements western medicine. But always be honest with your doctor and always talk to your doctor, you know, don't take herbal supplements that people promise will cure you of cancer or promise you energy because sometimes you might actually be doing yourself more harm than good.

So always be honest with your doctor and remember that you're actually in charge of your own survival and your own health, and how you handle it is up to you and if you're not happy with your physician and don't be afraid to talk with them about it. And again I can't say enough, don't be afraid to ask questions. Don't be afraid if you're not feeling well on a weekend and you feel you need to go to the hospital, pick up the phone and talk to somebody, don't wait until things, I've landed in the hospital probably three times off the top of my head because I've waited too long to go because I thought I could handle it myself and I would be okay or I've gone back to work too soon because I felt that I was ready to go back to work and my doctor kept telling me not to go back too fast. Or I didn't want to bother the doctor on the weekend. And now that I think about it and say it I know it's absolutely ridiculous to even think that way but I was that way for a long time and wasn't a proactive participant in certain parts of my treatment. For the most I was but for a lot of different things I didn't help myself. I was always worried about everybody else and what it would do to everybody else and if I cried it would make everybody upset so wasn't going to cry of if I said I didn't feel well that people would worry about me. There's a fine balance between that, balancing what's best for you and what's best for everybody else.

No more walls

But I promise you that if you're a newly diagnosed cancer patient and you see all that, know the walls have dropped around you and the world you know is not the same place it was yesterday. Know that this experience is going to be more positive than you probably would ever ever imagine, and now being a cancer survivor is what I am. And it's one of the most wonderful pieces of me and one of the most wonderful pieces that I share and if I hadn't had cancer I truly wouldn't be who I am today. You belong now to a very exclusive club that you are now a member of. And you'll see things much differently than you ever did before and that people have never experienced this disease can even understand and um you're in control of your destiny and how you handle your survivorship. There's gonna be days that you don't think you'll be able to get through it, and you will, and you'll come out a winner. One of the tricks that I wanted to mention, it's very simplistic and it sounds crazy but I have shared it with a number of people and it's funny that they come back to me and tell me that you know it does help sometimes. One of the tricks when I was a teenager that I used to use when I was receiving chemo or if I was in a situation that I didn't think I could take one more second of a painful test or even just the worrying about what was going to happen the next day, but I would think about you know what time of year it was and what the month was and some positive things that I've wanted to do. And then I would say, for instance, this time next September not gonna be in the hospital, I'll be finished with treatment and I will be you know, back at school or I'll be taking a trip to Disney that my mother promised me. But I would look ahead to the year ahead or to two years ahead and say, you know, or even the month ahead, I'd say this time next month this test will be you know a memory it'll be all over with, I'll have already finished chemotherapy.

Basically look ahead and look for the positive and get yourself out of the situation that you're in and think that, it helps to know that there's going to be an end to something. So if you're in the middle of a painful test you know even thinking a couple of hours ahead you know, at six o'clock tonight I'll finally be in my bed this will be you know something in the past and a long forgotten memory. Trying to think of things that you like to do, you now, also, you now, are very helpful for me. I love the beach and whenever I could when I was even if I was sick if I was able to I would go, have someone take me, even in the winter sit and watch the ocean. And it gave me a calm and it made me very happy to do that. And I'm sure there were many things that would make you happy, so whether it's reading a book or watching a soap opera or you know calling a good friend on the phone. Think about the things that you like to do and try to incorporate that or give yourself some time or save some energy to be able to do it, or think about some future things that you'd like to do and you know, plan it in your mind when you're in the middle of something you don't think you can handle. But I promise you that being a cancer survivor is one of the most wonderful things that ever happened to me. And like I said, people think that I'm crazy when I do say that, but I would not change being who I am today for anything in the world. And I've said it before but cancer truly has made me what I am today and has made me live my life to the fullest, potential and has enriched me in ways that I probably never will find the words to say.