“My Voice” by Jamie Lindsay

Jamie Lindsay - 'Survivor'

Thanks for the lessons, and Happy Father’s Day,  Dad!

I was born a long time ago and was Jean and Sandy’s bouncing baby boy, James, a.k.a. Jamie.  A review of the facts surrounding my arrival might lead one to believe that I was not supposed to be here.  You see, seven years before I hit the planet, my father was diagnosed with brain cancer.  Well, okay, it was never called cancer!  It was a “malignant tumor.”  After all, we were members of polite society, and as such, we never used the word, cancer.

For the first thirteen years of my life, I witnessed my father deteriorate.  In his youth, driven by his genetic disposition to be “too lazy to work and too nervous to steal,” he followed his love of aviation and became a test pilot, a Military pilot in WW II, and an airline pilot.  After passing out in an aircraft at age 26 due to what was first thought to be epilepsy, his flying days ended pretty much forever.  By the time I arrived, he had been diagnosed with the tumor, and had his head opened to remove some tumor and some brain.  He was left with speech difficulties and ever-increasing paralysis on his entire right side, and some disposition issues, which could be pretty ugly.  Throughout the years, he had surgeons take more swipes at his head even though they readily admitted that the procedures would not, in all likelihood, improve his condition.  On that, they were correct.   Willing to take any chance to improve, he agreed to have his head reopened several times even though doctors told us that it was very likely that he would not survive the operation.  Each operation resulted in a degrading of his condition with further paralysis, constant acute pain, speech impairment which made conversation frustratingly impossible, and quick transitions from cane, to crutch, to wheel chair to permanently bed ridden.  Not a great picture for a young boy to see, his father having to be fed, washed and moved into a bed at home.  Every move he made resulted in agonizing pain and a tortured outcry that would break your heart.  However, at the end of the agony he would always catch your eye and somehow screw up the courage to laugh at the situation.   After his final eight hour operation, much to the surprise of the doctors, he awakened, looked around the room, felt his bandaged head and uttered the ONLY word he could ever get out without stuttering and said, the new family motto: “Shit” and then laughed. How he managed that laugh remains a mystery to me even to this day.

About three years later, after my siblings were clearly on their way to getting good educations, and I was accepted into a prep school, my father really began to fade.  He was transferred to a nursing home, and in the Spring of my thirteenth year, confident that his children were going to be okay, he quietly passed.  He was 45.  He never got to meet his granddaughters my brother wanted him to show him, nor did he ever get to share a cockpit with me.  You see, I inherited the “lazy gene” from him and started flying shortly after his death.  In the end, however, he did teach me enough to survive his cancer, his death, and my childhood.

Fast-forward over 40 years to the March of 2007.  After two years of living in the Arizona desert actively skydiving,  I returned to my home in Virginia.  I was tired, having extreme night sweats, and had terribly sore hips.  Even though most doctors attributed my sore hips and fatigue to doing over 500 skydives a year at an age when I was supposed to be playing golf, I knew something was wrong.  After over a month of testing and being transferred from one amazing doctor to another, on the 27th of March, a young Doctor who was participating in an oncology fellowship came into the room and told me that I had cancer.  He went on to say how busy he was and that I should go out into the waiting room and think about any questions I might have and when he broke free he would do his best to get to me to answer my concerns.  Reverting to my father’s irrepressible laugh, I chuckled and then told him, “Listen you pencil-necked little geek, you have ten seconds to get out of this room and send in the REAL doctor and do not return without her or you will practice the rest of your career with a severe limp!”. He bolted from the room and the “real doctor” returned, alone.  After straightening out the participation level of her “Fellows” in my upcoming treatment,(read zero) I was advised that, indeed, I did have cancer, Stage 4 Lymphoma to be exact.  Left untreated I had mere weeks to live: three weeks at a minimum and twelve at the outside.  It seems that tumors had invaded my hip and pelvic bones and were surrounding my spine.  In my Doc’s view, if the spine was invaded, it was game over.  Trying my best to emulate my father’s laugh even during the worst of times, I suggested that with only three weeks to live I could call my ex-girl friend, get her to move back in and move to Cleveland.  Three weeks like that would seem like forever!  My Doc was unmoved and suggested that I needed to begin treatment immediately.  Because during all the testing I was fairly certain that I was going to get bad news at this visit, I had been scouring the free information provided by the Lance Armstrong Foundation at www.Livestrong.org.   I was ready with a ton of questions. I asked my Doc about clinical trials, second and third opinions, about my odds of recovery, and side effects of treatment.  We went through it all and agreed on a course of action; a flight plan for me.  After a couple of hours, it became clear that because of what my father had taught me about facing adversity, I was going to survive being told those lovely three words, YOU HAVE CANCER!

Five days later I was in treatment paralleling a clinical trial.  Paralleling because at the end of my treatment my Doc wanted to add 20 blasts of radiation just in case my cancer didn’t get the message.  The radiation was not part of the trial she was conducting.  Just like my father, I was going to be a test pilot to see if this treatment would really fly.  I just had to survive the flight!  Under the trial, I would be hospitalized for six days and receive chemo 24 hours per day along with huge doses of steroids.  After the six days I would be sent home for two weeks and two days to “recover” just enough to allow the Doc to repeat the chemo infusions in the Hospital.  The six days of chemo sucked, but then again, so did the two weeks and two days at home.  I was home alone, and not by choice.  Unfortunately besides inheriting the “lazy gene” from my father, I also got his looks and “charm”, both of which I have successfully used as “birth control” for decades.  Except for one extraordinary neighbor and some friends who called to check on me every day, this was going to be a one-on-one fight: me against cancer.  Bring it!

As the pilot in command of this flight, I took on responsibility for my care and the terms of engagement with my doctors, nurses, hospital administrators and insurance company.  Just as my father had, I would make all the decisions I could and be actively involved in all others.  Doctor’s policies and procedures were followed ONLY if they fit into my plans, schedule and idea of how this whole thing should go.  I made all of my own appointments with radiologists, for scans and blood work, and I decided what kind of exercise I would do and what meals I would have and most important, I decided on MY attitude and how I would react to all of this “stuff!”.  It was, as the LAF Manifesto states, my life, my disease, and my fight.  I was the captain of my plane, and I was going to fly it my way.  If I had weeks to live, I was going to decide how I was going to feel and behave as I departed the planet.  Otherwise, IN MY MIND, I was already dead.

Fortunately for me, my lowest day came on Father’s Day of 2007.  For the first time I was sure I not could keep going.  The toll on my brain and body seemed too severe.  Then, as if he never left, my father gave me another lesson. My father hung in for two decades without any of these new treatments or symptom reducing meds.  If he could do that, I can make six months!  I mean if this DNA stuff is to be believed, then OJ did it and I can survive a fight that is about 2% of what my father withstood. Time to man up, stop your whining and Fight On!  That day and for the rest of my treatment I started walking like a maniac.  I even walked a 5K for breast cancer research at the Richmond, VA, Komen Walk with 15,000 of my new best friends. (Much to the dismay of my germ-o-phobic Doc.)  I swam, I spoke on the phone, and I organized my death and the distribution of all of my stuff.  I even got the Allen-Edmonds shoebox (American made shoes) into which my ashes were to go so I could be buried next to my dog Sidekick out in Colorado.  Just as my father did every day of his life, as I fought for life, I worked on my “exit strategy” to be sure that everything was under control so no one else would have to worry.

Like my father before me, when someone would have trouble finding the right words, or back away when they heard I had cancer, or tried to do everything for the “dead guy,” I just let out a laugh at the absurdity of it all and made them feel comfortable.  Here I was fighting for my life and, just like my father taught me, I was worried about their feelings.

After six, six-day chemo treatments and a weight gain of just over 70 pounds, I graduated from chemo with a diagnosis of complete remission and went on to 20 radiation treatments.   Finally, exactly six months to the day after diagnosis, I had officially survived treatment for cancer and the cancer itself.  Now it was on to one journey for which I thought I had no role model, the journey to survive each day after staring into the eyes of my own mortality.  Despite being overweight, suffering from neuropathy, arthritis, a fried thyroid, malfunctioning adrenal glands, fatigue, hair that returned as puppy fur and not scalp cover, and having to decide whether it was “chemo brain” or old age, I had to figure out how to survive real life!

It did not take long for me to realize that the answers would, as usual, come from my father.  Although he lost his battle, his lesson was clear, fight on, take no crap, assist others when they need a hand, laugh a lot, hit the BS detector when necessary, and above all, take back the sky!  After all, that is where our dreams live.  I have tried to get involved in the “best cancer” movement, but it is pretty clear that at my advanced age and disposition I do not fit well there. So I have jumped back into the air.  I began skydiving again and I am preparing to fly my antique open cockpit bi-plane again very soon!

I am trying to raise awareness about cancer and how it is impacting the next generation of Americans.  I am a firm believer that my generation is OBLIGATED to leave this planet BETTER than we found it, and when it comes to cancer and young adults, we are failing miserably!  We must do better.  WE must give our children a future free of cancer! Perhaps that message is the lesson I have learned from my journey battling cancer.

So I have now survived re-entry into MY life. Just as I was able to define my treatment and my fight with cancer, I continue to try to define my new chance at life.  I have joined the ranks of other survivors who have fought this battle on their own terms.  They are a very tough bunch. I hope they stay by my side, as I would not like to fight any of them.  They are tough.  I fought my battle remembering the lessons learned from my hero, my friend, and my role model, my father.  Almost 50 years after his death, he is still teaching me lessons and through me, he still survives to this day!

I never got to say this to you enough, but “Happy Father’s Day and Thanks Dad, you gave me life, TWICE!”

Jamie Lindsay