“My Voice” by Cyndy Sotomayor

I had a feeling something was wrong.  I had always been a fireball of energy and activity, but something was “off” and I just couldn’t figure it out.  I was always tired.  Not normal everyday tired, but tired with a crushing fatigue that sleep didn’t seem to help.  I barely had an appetite, and when I did eat, I would get nauseous.  I always had heartburn.  In less than six months, I had lost over 30 pounds.  By July 2007, I had come down with a cold and hacking cough.  Two months later I was still sick.  My doctor’s diagnosis:  depression caused by anxiety and seasonal allergies.  Her prescription:  Zyrtec and a beach vacation.

And then it happened.

In the shower.

Washing my hair.

I felt it.

In my neck.

Bulging.

Something was DEFINITELY wrong.  And while the thought of the “Big C” loomed in my mind, I quickly dismissed it because there was NO WAY I could have cancer.

See, cancer was something that happened to “other” people.  With the exception of my grandmother who had died of multiple myeloma in 1993, there was no history of cancer in my family.  While I wasn’t a health nut, I definitely didn’t think I was unhealthy:  I exercised regularly, had never touched a cigarette in my life, never did any illegal drugs, practiced safe sex and got regular check-ups.  Sure, I love coffee, French fries and margaritas – but those are pretty “safe” vices if you ask me.  For the most part, I followed the rules for good health.

But cancer doesn’t play by the rules.

I went from being a healthy 36-year-old, to suddenly being diagnosed with stage 4 non-Hodgkin’s lymphoma.  My cancer was like an iceberg.  The swollen lymph nodes in my neck were just the tip.  The biggest part of my cancer was hidden deep inside my body:  a five-inch mass sat in the middle of my chest and malignant nodules had settled in my lungs.

I was suddenly thrown into a world of doctors, tests and medications.

The first time I met with my oncologist, I almost ran out of his waiting room.  A young, healthy runner doesn’t belong in a room filled with old sick people.  I quickly learned that older people get very uncomfortable when they see a young person with cancer.  Although no one wanted to make eye contact with me, those that did seemed to scream:  “That poor young girl.”  It didn’t take long for me to hate going to his office.

Within three weeks of my diagnosis, I had a surgical biopsy, learned what a PET scan and Muga scan were and started my chemo regiment.  I had never been poked and prodded so much in my life.

I also have never cried so much in my life.

I cried during my bone marrow biopsy (worst pain ever!)  I cried at the collection of pill bottles that suddenly littered my night table.  I cried every time they infused me with adriamycin, a very toxic chemotherapy drug that is bright red and cold.  I could actually feel it in all its icy glory flow through my veins.  I cried when my trademark red hair came out in clumps in the shower.  I cried the first time I saw myself bald.

Through it all, my long-time boyfriend, Chris, never waivered.  We had been together for twelve years and like most relationships we had had our share of ups and downs, but he hadn’t signed up for this.  Yet, he never left my side.  He went to every doctor’s appointment with me.  He took me to every chemo treatment and watched every drug as it was shot into my veins.  He kept meticulous records of my test results and insurance paperwork.  He kept track of my medications.  He took me to have my head shaved and helped pick out my wigs.  He took me to church.  He never complained.

After nine long months, I was finally declared cancer-free!  I could put it all behind me and go back to living my life.

Or so I thought…

Four months later, I had a mammogram.  My heart dropped when I saw the picture.  There was “something” in my right breast.  Although it didn’t look cancerous, they ordered a biopsy to be sure.  Why was this happening to me?  I had just started feeling like I was getting back to a normal routine in life.  I wasn’t ready to deal with cancer again.  Luckily, this time it was a benign fibroadenoma.

Having a breast cancer scare so soon after finishing treatment touched off a crushing depression that lasted for months.  I didn’t realize until then how terrified I was at the prospect of going through treatment again.  I truly felt that if I had to live with this constant fear of cancer, it wasn’t worth surviving.  Death would be a better option because at least then, I wouldn’t have to worry about it anymore.

Like I said, cancer doesn’t play by the rules.

To this day, I suffer from post-traumatic stress disorder that all medical appointments trigger. But cancer check-ups are the worst.  The weeks leading up to my tests are marked by regular crying jags and insomnia.  When I am finally able to fall asleep, I experience extremely violent nightmares.  Most feature my oncologist.  I know that his job is to heal me, but in the dark recesses of my unconscious mind, he is someone who takes pleasure in hurting me.  There have been times when my irrational fear takes control of my mind during an office visit, causing the emotions to run so high that I lash out at him like a cornered animal whose life is threatened.

If anyone deserves sainthood, it would be my oncologist.  With his heavy patient load, the last thing he needs is a patient that yells at him.  But he has never given up on me.  I don’t believe that he is God, but I do believe that he is very committed to giving his patients every chance he possibly can through modern medicine and science to successfully treat cancer.  I really don’t look forward to ever having to go through treatment again, but I trust him.  He has proven that he will always try to make the best decisions he can, given the information available to him at the time.  That’s all I can ask of him.  It’s been a slow process, but with the help of therapy and medication, I’m learning to re-wire my brain to accept the fact that it’s the cancer he’s determined to kill, not me.

I’m always asked how did I get cancer at such a young age.  I wish I had a better answer other than, “Shit happens and it just happened to me.”  Some of my early blood tests showed that I had a high exposure to the Epstein-Barr virus.  Apparently there is a link between that and non-Hodgkin’s lymphoma.  There are studies linking the outbreak of respiratory ailments and lymphoma cases over the years among first-responders, volunteers and residents who lived near Ground Zero after 9/11.  Six months after 9/11, I moved into an apartment less than two miles from Ground Zero and lived there until 2004.  I certainly can’t prove anything, but in the back of my mind, I think there may be a link.

Since treatment, I’ve learned that my experience was not uncommon among young adults under 40.  I always felt completely isolated when I sat in a chemo room full of “little old ladies” and the people in general support groups were so much older than me that I had a hard time connecting with anybody.  Luckily, I found The I’m Too Young For This! Cancer Foundation and I believe in their mission so much, that I volunteered to start their Long Island Chapter.  As an organization, we are committed to helping other young adults cope with everything a cancer diagnosis brings.  I think it’s important that young adults have a support network to get through cancer and we also need to bring awareness to the medical community that young adults can and do get cancer.  (Please don’t get me started on the new mammogram and pap test screening guidelines!)  Many young adults aren’t diagnosed until their cancer is at an advanced stage because doctors aren’t trained to look for cancer at our age.  It was estimated that I could have had the mass in my chest anywhere from 12-18 months.  Every time I asked my internist at the time if I should see a specialist, I was dismissed because I was “young and healthy.”  Believe me, I’ve learned my lesson and will NEVER again go to a doctor who discourages me from getting a second opinion.

Cancer survivorship has been both a blessing and curse for me.  Like many young adults with cancer, I run the risk of future medical problems. Because of the drugs they gave me, I’m at a slightly higher risk for leukemia, ovarian cancer and bladder cancer.  Radiation therapy to my chest has increased my chances of breast cancer.  I can never get pregnant.  The adriamycin will probably cause damage to my heart as the years go by.  Six months after I finished treatment, I lost four teeth.  So far, it’s cost me just over $12,000 out-of-pocket to repair the damage.  I still suffer from “chemo brain” and find it hard to concentrate or multi-task.

But cancer also helped me to re-evaluate my life.  I’ve forgiven myself for some of the stupid choices I made in life.  I’ve let go of past hurts.  I’ve tried my best to make amends with people I’ve hurt and while I haven’t always been successful, the ones that I have been successful with have renewed some pretty wonderful friendships.   Most importantly, I healed a very broken relationship with my big brother, with whom I’d been estranged from for many years.

I’m a lot kinder to myself these days too.  I’m no longer a slave to my to-do list.  Petty annoyances roll off my back much more quickly.

I’ve also done some silly things I never thought I would do:  Zip-lining through a rain forest in Antigua.  Skydiving (twice).  A tattoo.  Hiking Mt. Vesuvius.

I even got the courage to tell my long-time boyfriend that I didn’t want to be his girlfriend anymore.  To my surprise, he agreed.  And after fourteen years together, we finally got married on the two year anniversary of my cancer diagnosis.  It was our way of saying, “Nice try, cancer.”

I know that remission is not a cure.  I live in fear of getting cancer again mainly because I’m terrified of going through chemotherapy again.  I fear the day my oncologist walks into the exam room and says, “I’m sorry, but there’s nothing more I can do for you,” because I know just how limited my time on earth is and there’s still so much I want to do.

But every day I wake up.

I get dressed.

I go to work.

I laugh.

I live.

I survive.

This entry was posted on Wednesday, December 23rd, 2009 at 10:31 pm and is filed under written word and tagged with Co-Survivor, Cyndy Sotomayor, Lymphoma, NHL, non-Hodgkin's lymphoma, Survivor.