Big things are taking shape at Alissa's Hope! On Tuesday night we were invited to Lindenwood to sit in on presentations from an emarketing class with new ideas of promoting events and promoting our message. The students had been working all semester on marketing campaigns just for our charity!
The results were magnificant and the information that was passed on to us was priceless. I can't even imagine the amount of money and man hours it would have taken us to do this research and preparing on our own time. I want to sincerely thank each and every one of the students and their lovely teacher for being so generous. We were blown away hearing each group of students quoting us on something that we said when we spoke in front of the class at the beginning of the school year. They really listened to what we wanted to accomplish with Alissa's Hope. They gave us more hope than we ever could have imagined!
Each of the 5 projects that were presented to us had grand ideas and I know that parts of each program that were suggested to us will be used in the future. The wheels are turning and new ideas are generating even since last night!
Big things are going to happen soon! We can't wait to be able to unvail our big campaign for 2013. Thank you to all of our generous supporters over the years. You will not be disappointed for what we have in store for the future!
Thursday, October 11, 2012
Wednesday, October 10, 2012
My Cancerversary - May 15th
I have had 12 cancerversaries so far. It was on May 15th, 2000 that I received my diagnosis of Triple Negative Invasive Ductal Carcinoma. We celebrate this day every year like it is a birthday.
When my now husband was asked to join us in the celebration for the first time, he was very reluctant. "Why are you celebrating the day you found out you had cancer? It was a terrible day."
Sure it was a terrible day. No one ever wants to hear that they have cancer. But that day represents more than just that news. This day to me also means that they finally identified what was wrong with me. It had been months of problems and no one could pin point what this was. It also meant that the lumpectomy that I had days before removed at least part of my cancer. It was a terrible day but it was also the beginning of my survival.
Life changed on that day. For better or worse I was never the same person as I was on May 14th, 2000.
When my now husband was asked to join us in the celebration for the first time, he was very reluctant. "Why are you celebrating the day you found out you had cancer? It was a terrible day."
Sure it was a terrible day. No one ever wants to hear that they have cancer. But that day represents more than just that news. This day to me also means that they finally identified what was wrong with me. It had been months of problems and no one could pin point what this was. It also meant that the lumpectomy that I had days before removed at least part of my cancer. It was a terrible day but it was also the beginning of my survival.
Life changed on that day. For better or worse I was never the same person as I was on May 14th, 2000.
Monday, October 8, 2012
The Taste of Ensure
I lived an entire month on Vanilla Ensure. I can still taste it in my mouth when I think about it. I could not eat, I could not think about eating. The chemo had really taken it's toll on me. I was numb. I couldn't feel anything and I wouldn't let myself feel anything. I was starting to believe that this could be it. If I couldn't find the will to eat food, what did that mean for me? I started drinking a lot. I didn't care anymore. If I was going to die, it was going to be on my terms. Not from cancer and not from the effects of chemo. Eff that. I was going to live my life and I was going to live like there was no tomorrow. And oh Lord how I did. There were many things I wish I could take back from that time.
I would go out and I would drink myself stupid, which wasn't hard. I would drink until I forgot how bad things were and someone would have to carry me home. I remember being at my boyfriend's house and drinking an entire bottle of Jim Beam and smoking a whole pack of cigarettes. I ended up so sick on the floor of the bathroom of his apartment. Out of desperation since I might be suffering from alcohol poisoning, he called my mother to come get me. They both carried me up 3 flights of stairs while I wept about how "I would have never made it through college if I had gone to SMSU." I wish I could say that this was an isolated incident but it wasn't. This became normal to me for a long time.
I drank to forget. I would wake up the next day and be even more sad. I would go to school, go to work, and then it would start all over again. I didn't care who I took down with me either. This was my life for years. I don't think it was even possible to be a more miserable person than I was.
When I reflect on that time in my life it feels like it isn't even me. I feel sorry for that person. What a waste of a good life. I don't ever want to taste Ensure again.
I would go out and I would drink myself stupid, which wasn't hard. I would drink until I forgot how bad things were and someone would have to carry me home. I remember being at my boyfriend's house and drinking an entire bottle of Jim Beam and smoking a whole pack of cigarettes. I ended up so sick on the floor of the bathroom of his apartment. Out of desperation since I might be suffering from alcohol poisoning, he called my mother to come get me. They both carried me up 3 flights of stairs while I wept about how "I would have never made it through college if I had gone to SMSU." I wish I could say that this was an isolated incident but it wasn't. This became normal to me for a long time.
I drank to forget. I would wake up the next day and be even more sad. I would go to school, go to work, and then it would start all over again. I didn't care who I took down with me either. This was my life for years. I don't think it was even possible to be a more miserable person than I was.
When I reflect on that time in my life it feels like it isn't even me. I feel sorry for that person. What a waste of a good life. I don't ever want to taste Ensure again.
Sunday, October 7, 2012
PINKAPALOOZA
PINKAPALOOZA happened on a dare. For those of you that have never attended, PINKAPALOOZA is our annual trivia night. But it isn't the average trivia night with a dull powerpoint presentation and a house PA system. We pull out all the stops, often having live performances and video montages and light shows and confetti and dancers. It is out of control! We love doing it but it takes every bit of 3 to 4 months out of our lives.
After my friend Gwen had passed away we decided to do a fundraiser to make some extra money for the Race for the Cure. Since she had had such a big roll in the first years that it had been in St. Louis we were happy to keep up her enthusiasm for it. We had thrown a party at a bar and raised a few thousand dollars when a friend of ours challenged us to raise $10,000 for the next year for my 10th year in remission.
We gave it a shot with the PINKAPALOOZA trivia night and succeeded beyond our wildest dreams. That year we ended up giving Komen St. Louis nearly $20,000!
In the past 3 years of PINKAPALOOZA we have raised over $60,000 in the fight against cancer. Each year we have over 50 volunteers that take the time to make something of this size possible. I credit them and especially my husband for all of the success. I am just the reason that brings everyone together. That is humbling. And we have had a lot of fun doing it. Here are some of my favorite memories in the last few years.
http://www.youtube.com/watch?v=WsgLfJR8oS4
http://www.youtube.com/watch?v=Xm5UsngVMpE&feature=endscreen
http://www.youtube.com/watch?v=tmKboV9O37M
http://www.youtube.com/watch?v=StDnXBKEAD4
Scars
Everyone that knows me can tell you that I am a lover of music. I love all genres and hearing a song can bring me back to a certain event in my life or a feeling that may have been forgotten about for some time. I can create a soundtrack of my life. I can relate a lyric to a relevant life event. (I can do this also with Simpson episodes but we can save that for another topic)
So today it is all too fitting that when I heard the song "Name" by the Goo Goo Dolls that I relate it to today's post. Particularly the line "Scars are souvenirs you never lose, the past is never far."
I have many scars. Some show my ambition, like the gouge out of my shin from running along side of the merry-go-round at the playground and trying to jump on when it was going it's fastest. Or the bleached out skin on my knee from tripping on blacktop trying to out run a team for first place in an orienteering meet. (OK, I was clumsy too.) Some are a reminder that my bones grew faster than my muscles could keep up like the 3 holes in my knee from the numerous dislocations I had to have repaired. And some of them, like my mastectomy scar and the scar from the 42 staples on my leg, make me sad but also remind me just how far I have come and how lucky I am to be alive.
I am not the scared little girl that started this journey. I am not alone and I am certainly not alone in this fight. I have been lucky to not only beat this disease but to have the opportunity to share my story so that others may learn from my mistakes, my heart brakes, my triumphs and my good deeds. Cancer may still beat me in the end. But before I go, I will spend my time trying to make the biggest impact that I can to inspire the next generation to fight. Like Gwen inspired me.
So today it is all too fitting that when I heard the song "Name" by the Goo Goo Dolls that I relate it to today's post. Particularly the line "Scars are souvenirs you never lose, the past is never far."
I have many scars. Some show my ambition, like the gouge out of my shin from running along side of the merry-go-round at the playground and trying to jump on when it was going it's fastest. Or the bleached out skin on my knee from tripping on blacktop trying to out run a team for first place in an orienteering meet. (OK, I was clumsy too.) Some are a reminder that my bones grew faster than my muscles could keep up like the 3 holes in my knee from the numerous dislocations I had to have repaired. And some of them, like my mastectomy scar and the scar from the 42 staples on my leg, make me sad but also remind me just how far I have come and how lucky I am to be alive.
I am not the scared little girl that started this journey. I am not alone and I am certainly not alone in this fight. I have been lucky to not only beat this disease but to have the opportunity to share my story so that others may learn from my mistakes, my heart brakes, my triumphs and my good deeds. Cancer may still beat me in the end. But before I go, I will spend my time trying to make the biggest impact that I can to inspire the next generation to fight. Like Gwen inspired me.
Friday, October 5, 2012
Chemo
Chemo is a crazy beast. It is everything people think it is and worse. Or at least it used to be. I take solace in thinking that a lot of things have changed as far as treatments go in the last 13 years.
As a first timer it is an incredible mix of being sad and scared. Here you are with all of your hair walking past people of all races, colors and ages and it becomes abundantly clear that cancer does not discriminate. You read every face that you pass and wonder which cancer has been eating away at them. Some people were sleeping, others reading, some just looking around. Some people had a friend or spouse or other support person with them. Some were alone. Some people were proudly bald, some had new hair growth, some wore hats. There were a few women with beautiful scarves tied neatly around their heads. Everyone watches you, pities you, because you have no idea how shitty this is going to be. It's like walking the Green Mile.
My mother always sat with me. Always. I think it was harder for her than it was for me. Now that I am a mother I have a new appreciation for what she went through. The helplessness is debilitating. She always said that if she could trade places with me, she would. I know that wasn't just talk.
My friend Natalie was with me all but one of my treatments. Even coming home from school to hold my hand. That was huge. I realize that more now than when it was happening especially because we were kids and the world was her oyster. She could have been anywhere and done anything but she was with me to show that she hadn't given up on me and I shouldn't give up either.
Another memory of all of this was that the cafeteria at Barnes was directly below the chemo room. My brain made the association with the smell of the Aunt Annie's Pretzels with being sick from chemo. For several years the smell of pretzels made me throw up. I wish I was kidding about that! I love hot pretzels!
After a treatment I would be very tired. I was still trying to work and would often fall asleep on the job. I was still trying to hide it and would often get ribbed for "being out too late again" last night. Sometimes that was true, I have to admit. I played hard for many years. But the chemo was a huge energy drain. On the third day like clock work the nausea would start. I would throw up for days at a time. I remember feeling paralyzed in my bed because I felt that if I moved just a muscle I would throw up again. How can you vomit so much without eating? My throat was raw. My body was weak. It was like the flu times a million.
And then the worst of it would pass. In the next two weeks I would do my best to rest up and eat if I could so that I would be ready for the next treatment. Then it would start all over again.
I was lucky in so many ways. I made it to the other side. I have been in remission ever since. At the time I didn't understand that. I was just mad. I hated cancer, I still do. I hate everything about it. I hated having it. I hated that some of the people in that chemo room were there every week that I was and would probably be there for weeks after I was done. I hated when some of those people I got used to seeing weren't there and I had to wonder if they had been cured, had passed away or changed their appointment times. I hated that my friends were having the time of their lives and I was just trying to live. This was the beginning of a very dark time in my life.
As a first timer it is an incredible mix of being sad and scared. Here you are with all of your hair walking past people of all races, colors and ages and it becomes abundantly clear that cancer does not discriminate. You read every face that you pass and wonder which cancer has been eating away at them. Some people were sleeping, others reading, some just looking around. Some people had a friend or spouse or other support person with them. Some were alone. Some people were proudly bald, some had new hair growth, some wore hats. There were a few women with beautiful scarves tied neatly around their heads. Everyone watches you, pities you, because you have no idea how shitty this is going to be. It's like walking the Green Mile.
My mother always sat with me. Always. I think it was harder for her than it was for me. Now that I am a mother I have a new appreciation for what she went through. The helplessness is debilitating. She always said that if she could trade places with me, she would. I know that wasn't just talk.
My friend Natalie was with me all but one of my treatments. Even coming home from school to hold my hand. That was huge. I realize that more now than when it was happening especially because we were kids and the world was her oyster. She could have been anywhere and done anything but she was with me to show that she hadn't given up on me and I shouldn't give up either.
Another memory of all of this was that the cafeteria at Barnes was directly below the chemo room. My brain made the association with the smell of the Aunt Annie's Pretzels with being sick from chemo. For several years the smell of pretzels made me throw up. I wish I was kidding about that! I love hot pretzels!
After a treatment I would be very tired. I was still trying to work and would often fall asleep on the job. I was still trying to hide it and would often get ribbed for "being out too late again" last night. Sometimes that was true, I have to admit. I played hard for many years. But the chemo was a huge energy drain. On the third day like clock work the nausea would start. I would throw up for days at a time. I remember feeling paralyzed in my bed because I felt that if I moved just a muscle I would throw up again. How can you vomit so much without eating? My throat was raw. My body was weak. It was like the flu times a million.
And then the worst of it would pass. In the next two weeks I would do my best to rest up and eat if I could so that I would be ready for the next treatment. Then it would start all over again.
I was lucky in so many ways. I made it to the other side. I have been in remission ever since. At the time I didn't understand that. I was just mad. I hated cancer, I still do. I hate everything about it. I hated having it. I hated that some of the people in that chemo room were there every week that I was and would probably be there for weeks after I was done. I hated when some of those people I got used to seeing weren't there and I had to wonder if they had been cured, had passed away or changed their appointment times. I hated that my friends were having the time of their lives and I was just trying to live. This was the beginning of a very dark time in my life.
Thursday, October 4, 2012
The Prettiest Drag Queen
I was in the marching band for my entire high school career. I loved it and have a million wonderful memories of being in the band and traveling across the country and to Canada. One year we went down to Southwest Missouri State (I think it has changed names since then) for a a competition. I fell head over heals in love with the campus. We watched a football game and saw their marching band and I knew right then that there was no where that I would rather go to college. That was the plan.
My diagnosis came a week before high school graduation. The summer was filled with surgeries and chemo. Even though I had been accepted to SMSU it was becoming less and less likely that I would be able to go. If I did go I would have to come home for treatments every 3 weeks and during that time it was almost guaranteed that I would be sick for one of those weeks. There was too much that was up in the air. I was forced to make another hard decision. I had to decide to give up my dream school and stay close to home and the hospital.
Anyway, I did get to make some visits to the campus to see friends and we had some amazing nights out that I won't forget. It was a nice escape from what was going on back at home. And I was getting a taste of big campus life. It was the best I could do.
The funniest thing that ever happened to me while I was sick happened one night at gay bar we went to to meet an old friend and his boyfriend. They had been talking up how amazing the drag show was and I couldn't wait to see it. I got ready at the dorms with the girls and put on my best pair of pleather pants and a cute black shirt that tied in the back. I was skinny as hell then. I stood 6 feet tall and probably weighed 140 pounds. I put on make up. Not something I usually did but I was going out and everyone else was. I also had my trusty blond wig. I felt like a million dollars when we left to go to the club.
We watched the show and danced all night. We got drunk in the bathrooms since we didn't have hand stamps. We thought we were hot shit. We were getting ready to go and a cute guy slightly shorter than me with jet black hair walked up and slipped his arm around my waist.
"I just wanted to tell you that of everyone here tonight, you have got to be the prettiest drag queen I have ever seen. I am not into dudes but you are way hot."
I wish I could tell you how I responded to that! The next memory I have was being in the car with our friends laughing hysterically and me checking myself out in the overhead mirror trying to figure out why he thought that? Was it the wig and the make up? Was it because I was tall and had no curves? Either way, I convinced myself to take it as a compliment. After all, he did say I was way hot.
My diagnosis came a week before high school graduation. The summer was filled with surgeries and chemo. Even though I had been accepted to SMSU it was becoming less and less likely that I would be able to go. If I did go I would have to come home for treatments every 3 weeks and during that time it was almost guaranteed that I would be sick for one of those weeks. There was too much that was up in the air. I was forced to make another hard decision. I had to decide to give up my dream school and stay close to home and the hospital.
Anyway, I did get to make some visits to the campus to see friends and we had some amazing nights out that I won't forget. It was a nice escape from what was going on back at home. And I was getting a taste of big campus life. It was the best I could do.
The funniest thing that ever happened to me while I was sick happened one night at gay bar we went to to meet an old friend and his boyfriend. They had been talking up how amazing the drag show was and I couldn't wait to see it. I got ready at the dorms with the girls and put on my best pair of pleather pants and a cute black shirt that tied in the back. I was skinny as hell then. I stood 6 feet tall and probably weighed 140 pounds. I put on make up. Not something I usually did but I was going out and everyone else was. I also had my trusty blond wig. I felt like a million dollars when we left to go to the club.
We watched the show and danced all night. We got drunk in the bathrooms since we didn't have hand stamps. We thought we were hot shit. We were getting ready to go and a cute guy slightly shorter than me with jet black hair walked up and slipped his arm around my waist.
"I just wanted to tell you that of everyone here tonight, you have got to be the prettiest drag queen I have ever seen. I am not into dudes but you are way hot."
I wish I could tell you how I responded to that! The next memory I have was being in the car with our friends laughing hysterically and me checking myself out in the overhead mirror trying to figure out why he thought that? Was it the wig and the make up? Was it because I was tall and had no curves? Either way, I convinced myself to take it as a compliment. After all, he did say I was way hot.
Wednesday, October 3, 2012
A Gift That Changed My Life
When I started chemotherapy I knew that I was going to have to prepare myself for my hair to fall out but I never thought that it would be as traumatic as it was. I am not sure what I was expecting but when it started to come out, it came out in big chunks. The first time I had noticed I was out with a friend on a hot night. My car didn't have air conditioning and I was sweating like crazy. I ran my hands through my hair to get it off my face and all of the hair that I had touched ended up in my hands. I wept uncontrolably.
I guess why it hurt so much was because I just wanted people to treat me like I was normal. I didn't want to be fussed over or pitied. I just wanted to be a normal kid and do normal things. I could hide my scars. I could put on a smile and hide my pain but I couldn't pretend that my hair wasn't falling out.
Realistic looking wigs aren't cheap. Especially ones with a youthful style. My mother brought me to the wig store to check out our options and there was one that that looked like my old hair. It had the same highlights and the same cut. I can't remember how much it was but I do remember that we went home without it because we needed to weigh our options. It was another expense, bills were starting to come in and this was not necessary to my physical health.
Sometime after that my father had one of his regular union meetings. By this time word of my diagnosis had spread through the union and my dad's friends decided that they needed to spring into action. The people that my dad has worked with over the years have incredible hearts and they always band together when times call for them. They are also huge supporters of the MDA and have multiple fundraisers throughout the year as well as a large food drive each year to collect food for the poor. My dad helps in some way with every single event.
Even though some of these people had never met me, they decided to pass a hat at their meeting before dad arrived. At the end of the night they gave my father an envelope with the entire amount of a new wig.
I was blown away by this! What an incredible act of kindness. How humbling. Why would they want to help me? I mean nothing to them at all. It really made my heart sing. They cared enough to want me to feel like me again. Now I could feel "normal".
When we started Alissa's Hope, that was the feeling that we were hoping to give back to someone. We wanted the money that we raised to go to someone who really needed a hand, needed a pick me up, needed an advocate. We wanted the money to go to someone that would be inspired by the fact that a stranger cared enough about them that they made an effort to make a difference in their life. We hoped that the good feeling that this act of kindness had given them would make them want to pass along that good feeling to the next person once their life was back in order.
The gift that my dad's friends gave me was so much more than money, or the wig itself. My dad's friends gave me hope. And that is what I really needed.
I guess why it hurt so much was because I just wanted people to treat me like I was normal. I didn't want to be fussed over or pitied. I just wanted to be a normal kid and do normal things. I could hide my scars. I could put on a smile and hide my pain but I couldn't pretend that my hair wasn't falling out.
Sometime after that my father had one of his regular union meetings. By this time word of my diagnosis had spread through the union and my dad's friends decided that they needed to spring into action. The people that my dad has worked with over the years have incredible hearts and they always band together when times call for them. They are also huge supporters of the MDA and have multiple fundraisers throughout the year as well as a large food drive each year to collect food for the poor. My dad helps in some way with every single event.
Even though some of these people had never met me, they decided to pass a hat at their meeting before dad arrived. At the end of the night they gave my father an envelope with the entire amount of a new wig.
I was blown away by this! What an incredible act of kindness. How humbling. Why would they want to help me? I mean nothing to them at all. It really made my heart sing. They cared enough to want me to feel like me again. Now I could feel "normal".
When we started Alissa's Hope, that was the feeling that we were hoping to give back to someone. We wanted the money that we raised to go to someone who really needed a hand, needed a pick me up, needed an advocate. We wanted the money to go to someone that would be inspired by the fact that a stranger cared enough about them that they made an effort to make a difference in their life. We hoped that the good feeling that this act of kindness had given them would make them want to pass along that good feeling to the next person once their life was back in order.
The gift that my dad's friends gave me was so much more than money, or the wig itself. My dad's friends gave me hope. And that is what I really needed.
Monday, October 1, 2012
"You were 17 when you had breast cancer? I have never been so happy to hear that."
This past weekend my husband and I and a group of 8 of our friends went to a trivia night benefitting a young women's breast cancer group for one of the local hospitals - the same hospital that saved my life as I battled breast cancer nearly 13 years ago. Around us were doctors and surgeons and a room filled with donors looking to outsmart everyone else in the room. Needless to say, we never stood a chance... but man did we enjoy the bar!
The highlight of my night was meeting a young woman who was stalking an item on the silent auction next to one of my best friends who was stalking a chance to get us on a morning show to be able to tell my story during breast cancer awareness month (sadly we were outbid). After they had exchanged small talk I got a tap on my shoulder letting me know that there was someone interested in meeting me. This itself is not unusual at these things. While I never brake the ice by saying "Hi, my name is Alissa and I had breast cancer at 17," my husband and my friends all have brought it up in conversation with a stranger and that stranger always seems to be exactly who I was supposed to meet. It is like magic.
So here is this wonderful young woman, maybe 3 or 4 years older than me immediately reaching out for a hug and in our embrace she says something along the lines of, "You were 17 when you had breast cancer? I have never been so happy to hear that. I was 26. This is great! You understand what I mean, right?"
I DID! I totally understood. The "young women's" breast cancer groups are considered 45 and younger. In no way am I saying that 45 is old but when you are 17 or 26 it can still be hard to relate to someone who might already have a husband, a family and a career when you are fresh out of school, dating and trying to find your way. These age groups pose enough challenges as it is but then add nausea, strange side effects from meds, chemo brain, no hair, one boob, and endless recovery time and you are in a whole new ballgame. But closer in age, we felt like kindred spirits. We hugged again and started throwing out stories as if we had known each other our whole lives in the span of about 10 minutes. We both had miracle babies that we never thought we would ever be able to have. We both worked and finished school and were in remission and life was great.
A cancer diagnosis of any kind seems like a very lonely place and while you are going through it I think that all you want to know is that someone else is out there that can relate to what you are going through exactly. You want to know that you are going to be fine; that the road was paved and now you know exactly the way to go. After hearing for years from all of your doctors that "you are the youngest person I have ever treated for breast cancer," the two of us were comforted to know that there was someone else out there in the world that went through a lot of the same experiences.
As one of the trivia answers showed us that night, 13% of breast cancer diagnoses are in people under the age of 45. This number has increased since I was diagnosed in 2000. With this being Breast Cancer Awareness Month, I want to bring attention to all women but especially younger women who may have never considered themselves to be at risk. I personally had no family history and did not carry a genetic mutation. Here are my two cents:
1) Know your body. Do your self exams. I can't stress to you how important they are. That is how I found my cancer and was able to get the courage to tell my pediatrician that I thought something was wrong. As you can imagine no one was expecting that diagnosis in a teenager and it took several months to convince anyone to remove the lump. Which brings me to my second point,
2) Be persistent if you feel like something is wrong. Get a second opinion if you have to.
3) Know your family history. Did your mom have breast cancer? Your Aunt? Your grandma? You should start cancer screenings AT LEAST 10 years before the age of their diagnosis.
4) Maintain a healthy weight, exercise and eat right. More studies are proving that not carrying extra pounds reduces your risk.
5) And finally know that if you do find yourself with a diagnosis, you are not alone! There is someone out there who understands. Seek them out. Ask a million questions. Let's talk.
The highlight of my night was meeting a young woman who was stalking an item on the silent auction next to one of my best friends who was stalking a chance to get us on a morning show to be able to tell my story during breast cancer awareness month (sadly we were outbid). After they had exchanged small talk I got a tap on my shoulder letting me know that there was someone interested in meeting me. This itself is not unusual at these things. While I never brake the ice by saying "Hi, my name is Alissa and I had breast cancer at 17," my husband and my friends all have brought it up in conversation with a stranger and that stranger always seems to be exactly who I was supposed to meet. It is like magic.
So here is this wonderful young woman, maybe 3 or 4 years older than me immediately reaching out for a hug and in our embrace she says something along the lines of, "You were 17 when you had breast cancer? I have never been so happy to hear that. I was 26. This is great! You understand what I mean, right?"
I DID! I totally understood. The "young women's" breast cancer groups are considered 45 and younger. In no way am I saying that 45 is old but when you are 17 or 26 it can still be hard to relate to someone who might already have a husband, a family and a career when you are fresh out of school, dating and trying to find your way. These age groups pose enough challenges as it is but then add nausea, strange side effects from meds, chemo brain, no hair, one boob, and endless recovery time and you are in a whole new ballgame. But closer in age, we felt like kindred spirits. We hugged again and started throwing out stories as if we had known each other our whole lives in the span of about 10 minutes. We both had miracle babies that we never thought we would ever be able to have. We both worked and finished school and were in remission and life was great.
A cancer diagnosis of any kind seems like a very lonely place and while you are going through it I think that all you want to know is that someone else is out there that can relate to what you are going through exactly. You want to know that you are going to be fine; that the road was paved and now you know exactly the way to go. After hearing for years from all of your doctors that "you are the youngest person I have ever treated for breast cancer," the two of us were comforted to know that there was someone else out there in the world that went through a lot of the same experiences.
As one of the trivia answers showed us that night, 13% of breast cancer diagnoses are in people under the age of 45. This number has increased since I was diagnosed in 2000. With this being Breast Cancer Awareness Month, I want to bring attention to all women but especially younger women who may have never considered themselves to be at risk. I personally had no family history and did not carry a genetic mutation. Here are my two cents:
1) Know your body. Do your self exams. I can't stress to you how important they are. That is how I found my cancer and was able to get the courage to tell my pediatrician that I thought something was wrong. As you can imagine no one was expecting that diagnosis in a teenager and it took several months to convince anyone to remove the lump. Which brings me to my second point,
2) Be persistent if you feel like something is wrong. Get a second opinion if you have to.
3) Know your family history. Did your mom have breast cancer? Your Aunt? Your grandma? You should start cancer screenings AT LEAST 10 years before the age of their diagnosis.
4) Maintain a healthy weight, exercise and eat right. More studies are proving that not carrying extra pounds reduces your risk.
5) And finally know that if you do find yourself with a diagnosis, you are not alone! There is someone out there who understands. Seek them out. Ask a million questions. Let's talk.
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