I haven't written anything since my initial blog. I will start blogging more often from nowon. This is a repeat of something I wrote in my Survivor Alliance group but thought I would share on here as well with those who are not in the group.
Tonight I was thinking that the best thing about being diagnosed with cancer at twelve years old was that I had a free pass to cancer camp. I remember so vividly being in the oncologist’s office, the doctor talking about surgeries, chemotherapy and radiation therapy, I could hear them speaking to my parents about the 12% chance that I would live five years, and as my family sobbed I was brimming with joy about camp. Call it denial, the best defense mechanism known to man and woman.
I had my surgeries, my catheter was inserted, I lived through five days of radiation seeds inserted into my back and was on my way to chemo hell. Twelve years old and soon to be 100% hairless; that was certainly a self-esteem booster! I ended up wearing the most horrific wig I have seen to-date, was made fun of at school (teens whispering about pulling off my wig) and life at twelve was a living nightmare. The only problem is that the nightmare was real. I did not get to wake up in the morning in a pool of sweat and console myself with the reality that it was just a dream. No, cancer was my reality.
Finally! The time had come! I had just turned thirteen and was headed to cancer camp; I was nervous, scared and excited all at the same time. From the bus window I waved to my mom who had tears running down her face. I couldn’t wait to get away from the constant hovering, the over-protection, the incessant reminders that I was not like other kids my age.
I arrived at cancer camp to find that most of the kids had hair! They were alive and well and their treatments were over. They offered me hope. I learned a lot at that first session. First, despite many of us being so sick and staring at our own mortality we could laugh, and laugh we did. I learned that although I wore that hideous wig (no I wouldn’t even remove it at cancer camp), people still liked me. It was the first place I had ever been where people were liked for what was in their hearts and not by how they looked.
I learned about boys and crushes, I learned that I still had strength in me to hike and climb mountains, and I also learned that sneaking out and breaking rules was a lot of fun. Most importantly I learned to love my co-campers for the simple fact that we shared something huge, each and every one of us shared the cancer path.
Over the years camp offered me every experience possible; spin-the-bottle, lots of kisses, my first sexual experience (to my counselor’s dismay), I learned how to deal with adversity, and I broke every camp rule there was, but best of all, it provided me lifelong friends who continue, thanks to Facebook, to be my special chosen family.
When I turned 19 camp ended and I was devastated. No more cancer camp, time to move on. Call me immature but for some reason I did not want to let go of camp. How would I keep in touch with my friends? At that time we barely had cell phones and Facebook did not yet exist. I felt like a fish out of water. Although I had been cancer free for quite a few years I always bonded best with my cancer homies. I found that I continued along a rocky path, figuring out life as it happened. Before long I had no contact at all with any of my cancer family. Camp was nothing but a forgotten memory.
At 28 years old I found a lump in my breast. No way could it be cancer! I had been there, done that. There was no way that God could be that mean. To my horror the doctors said that the radiation used to save my life when I was twelve caused me to develop breast cancer. The term they used was “late effect.” This time as the doctor talked mastectomy, reconstruction and chemotherapy for six months I was an adult and alone. No mom and dad to cry for me and certainly no talk of camp. Instead I was given a brochure about a women’s support group. I had used up my defense mechanisms. The reality of my immortality was staring me in the face. Needless to say, I was devastated and alone.
Support group! WTF! I finally was so miserable I decided to attend. I was the youngest person by at least 30 years. I listened in horror as they spoke of knitting, the books they were reading and their diets. Many hadn’t had cancer for years. In my head I was like OMG shut the fuck up and talk about something real. I wanted to know how I was going to work while on chemotherapy, would I be fired? Was any man going to be attracted to me again? Would I ever again feel confident strutting my stuff around the house naked? Will I ever enjoy sex again? Would I be able to have children? And of course, the biggest question of all, AM I GOING TO DIE? Nope, nobody mentioned a single topic that was meaningful. All I wanted was for someone to tell me everything would be okay, and throughout the whole second cancer experience I never heard those words, not once. At 28 I desperately needed a cancer camp!
Eventually I made it through the six months. Luckily I did not lose my hair. I continue to suffer from scoliosis, osteoporosis, a weak heart, short stature, severe hearing loss, a thyroid growth, PTSD, severe anxiety and chronic fatigue. I discovered most of this on my own. I tried different things to help. I went to counselors, psychologists and group therapy. I tried journaling and yoga. However, nothing took away the loneliness, the feeling of being misunderstood. Finally I stopped sharing. I held it all in. When I was alone I would cry. Mostly the grief would come out in strange and embarrassing ways; like at the movies. The movie might be a little bit sad, just sad enough to safely tap into my sorrow. I was the only girl in the theater sobbing loudly and gasping for air. Strangers would come up to me and ask if I was okay and offer me tissues. It was one safe way to express my grief.
Finally! Cancer camp for chicks! I am so down for that. So off I went for five days up to the mountains. Immediately the feeling of loneliness was stripped away. Although I had never met these women I knew them because I knew their sorrow. Over the week we laughed and cried together. I met special young women my own age and no topic was taboo. We talked health, spirituality, we took midnight walks under the stars and we talked about sex. A LOT! Questions such as “Doctor, I haven’t had an orgasm for a year. What kind of vibrator should I buy,” or “It hurts to have sex, is there a special gel I can use.” The days were intense but my female cancer homies and I danced our nights away, listening to dance music full-blast at a Buddhist meditation center. We rocked and had so much fun!
I have been home quite some time now. I haven’t attended a cancer camp in a few years. I am currently cancer-free. Facebook has connected me to the majority of my cancer camp friends yet something is still missing. It has been twenty years since my childhood cancer camp yet I continue to yearn for relationships as real as those. To me there is no intimacy like looking into the eyes of another cancer survivor. So, I sit and ponder how to make it happen. I wonder where the 18 year-olds go when they get cancer. I wonder where the 35 year-olds who suffer heart attacks from late effects of chemotherapy go. I wonder about all of us who have growths on our thyroids and need to undergo yet another biopsy…where do we go? Who “gets” us?
It is these types of questions that keep me up late at night. The answer is that there isn’t much out there. It is in trying to create that special place for the next generation that drives me. When I am quiet and alone in the wee hours of the morning I hear a small quiet voice in my heart that motivates me to try and put something special together. My vision is that no one with cancer or a history of cancer need feel alone. I would like every survivor and newly diagnosed young adult to have a cancer camp. Finally, I want every cancer survivor to experience what I do when I look into your eyes; that I am not alone, that we are all perfect just the way we are, and that I “get” you. I want to look into your eyes and welcome you to our special family.
So, if you wonder what I am doing these days, most nights I am up until midnight writing, planning, researching, interviewing, speaking to other survivors, learning about their illnesses, tests and their families. I am trying to create something very special.
I certainly hope I am not alone with my feelings, I hope you can relate to me even if just a bit. Most of all I hope you stick around to watch my dream turn into a reality for all of us; and that no one has to go through cancer or the late effects of cancer alone.
The biggest lesson I have learned along the way in my life is that my support had to come from other survivors. As much as my family, friends, nurses and doctors loved me, no one totally “gets” me like you guys. So, I hope you will stick around. I need all of you. And quite possibly you need me too.
No comments:
Post a Comment