No One "Gets" Me Like Another Survivor

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.

Introduction

Hi, my name is Lisa and I am a cancer survivor.  Not just any cancer survivor, but a two-time cancer survivor!  As a matter of fact, I belong to three clubs:  the childhood cancer survivor club, young adult cancer survivor club and the breast cancer survivor club.  I didn’t want to belong to three clubs, but nobody asked me.  My initiation began when I was twelve. 

One hot summer day I was in my backyard, and had just climbed out of the swimming pool, bending over to grab my beach towel when my mom startled me by yelling “Lisa, bend over again!,” which I did and she walked over to me and rubbed my right shoulder blade with her hand.  She told me there was a lump about the size of a golf ball.  She said we needed to call my doctor. 

Dr. Hanley said it was most likely a cyst.  However, he did say it needed to be removed.  He referred me a surgeon with zero personality and an awful bedside manner.  Before I knew it the day had arrived.  I do not remember much about that day.  I know we arrived early and when we left the hospital it was daylight and my back hurt.  That was it!  Apparently, Dr. Shearer told my mom to bring me back to have my stiches removed.

Ten days later my mom and I arrived at Dr. Shearer’s office to have the stitches removed.  After he removed my stiches he told my mom that the pathology report came back and showed that my tumor was a sarcoma.  He quickly left the room as my mom looked at me and I said “mom, what is a sarcoma?”  My mom shrugged her shoulders and we left the office feeling confused as neither of us knew what a sarcoma was.

I do not remember the exact moment I learned I had cancer.  One would think hearing the news that you have cancer would stick in your mind forever, like you would remember every detail of the moment, like where you were, what you were wearing, what time of day it was.  Not me, I am a fan of denial.  What I do remember is my mom crying in the car.  One thing about my mom is that when she cries I cry and I do not even have to have a reason.  It has been that way as long as I can remember.  So, as I watched and heard her cry, I started to cry as well.

Next thing we did was go to Children’s Hospital of Los Angeles.  We had a consultation with the doctors there.  I recall my dad yelling at the doctors as we left the hospital.  He yelled “I will not accept that!”  I was told later he was replying to their suggestion that there was really nothing they could do to extend my five-year survival rate past 10%.  That is right, they told my parents that 12 other children were diagnosed with my rare sarcoma and none of them had lived past five years.  It made my parents angry and seeing my dad yell always filled me with dread.

Next stop Long Beach Memorial Hospital with Drs. Finklestein and Groncy where we had yet another consultation.   I do not remember anything they said that day except for the word camp.  They told me I would be able to attend a camp for children with cancer.  I never heard another word after that.  I was so excited to be able to go to camp.  As their mouths moved discussing boring things like survival rate, chemotherapy, 18 months and radiation, I asked myself when is camp, what will I pack, what will I do, what if nobody likes me?  My brain was absolutely thrilled with thoughts of camp.  I always wanted to attend a camp but my parents were so overprotective I was never given the option. 

Immediately following my doctor appointment, I went straight to the hospital for a week.  My mom lived an hour away and had two-year old twins.  I did not receive many visitors.  I called home every night in tears wondering when I could go home.  I did not know that my life was going to become hospital visits and chemotherapy for the next 18 months.  I did not know that my world would turn upside down and things would never be the same.  I never imagined that I would learn words like chemotherapy, broviac, Heparin, undifferentiated sarcoma, Thorazine, Adriamycin, etc.  I had no idea I would start learning to self-soothe and to hold my tears in, to be a “big girl” and to complain as little as possible.  That was the day of a new journey; one that was filled with good, bad, pain, happiness, loneliness, dread, fear and friends.  That was the first day of the rest of my life!

Scars and Appearance

I was thinking of cancer today which is not that unusual anymore.  I was actually reading a book that spoke about the changes that happen to our outsides, our physical appearance.  Besides the most obvious, hair loss, it was talking about scars.  My first cancer gave me the old-school Broviac catheter scar, the scar on my back/shoulder; the radiation burns, and then they thought the cancer spread to my lungs so there was another big scar.  By the time I was done with that cancer at 15, I had many scars and spent years ashamed of my body. 

Then, the second cancer came and along with it came a new catheter scar, a mastectomy scar and reconstruction surgery scars.  I was thinking, damn, yes I may have bigger boobs (trying to see the positive), but I am covered in scars!  I really didn’t know what to think of myself.  I looked okay in clothes but underneath was a lot of scars, and I felt insecure and hated my body for years. This affected me for a long time.

So what do we do with these sometimes not-so-subtle reminders of the wars we fought?  Some of us are lucky not to have the outside physical scars, but may instead carry the just as painful internal scars; many of us carry both.  The outside scars will always be with me; believe me I have checked with several plastic surgeons.  I have gone to many lengths to do away with my scars, I have kept them well covered, I have gone to the tattoo parlor to ask if they can be covered (the answer is no) and I have tried other creative ways to get rid of and/or hide them.  Unfortunately, there is no permanent remedy for their removal.  Therefore, the solution had to be to accept them; easier said than done.

I wish I could explain the exact moment that my self-image changed.  Not sure if it was a retreat I went to, the anti-depressant that I finally tried, or just age, but somewhere along the line I learned to accept them as a necessary part of me.  I cannot honestly say that I love the scars, but I can now see them as little miracles, each one necessary for the miracle of the life I have today.

So, now, I think differently about my self-image and the scars.  At the last retreat I went to I was one of many.  We all had the catheter scar just under our clavicle bones.  I was part of a tribe!  In addition, although I had always been girly on the inside I tended to be more of a tomboy on the outside, wearing baggy clothes and rarely in a dress.  Through my cancer experiences I have tapped into my femininity.  In the summer I am rarely found in anything but hippie skirts, flip-flops, toe-nail polish, girly, rhinestone shirts and in my new favorite color pink.  Pink!  I hated pink all my life!  All the sudden, I wish I could paint my whole house pink!  It is the color that makes me feel the best.  I also have grown my hair long.  It is the longest it has ever been and I love it.  In addition, I chose to add a few of my own scars to my body – tattoos of my choosing.  I intend to add a couple more very girly ones.  And oddly enough through the most recent cancer I found I love to dance!  I was always too self-conscious to do much of either. 

So yes, many of us carry our battle wounds but they do not need to define us.  Today I carry them proudly and no longer need to hide who I am.  This has helped me tap into a more authentic me.  I am happier and way more secure.  Somewhere along this path I turned more girly than ever, scars and all!  I love being a cancer survivor and being a girl J