“My Voice” by Karen Schueler

Karen Schueler - 'Survivor'

Five years ago I heard those dreadful words, “You’ve got breast cancer”.  It was suppose to be a routine mammogram.  I didn’t have any family history of breast cancer and I never felt a lump.

At my annual exam my GYN pointed out I hadn’t had a mammogram in 3 years and encouraged me to get one – just to be sure.  I didn’t feel any urgency, so I “got around” to it a month later.  I didn’t panic when I got the re-test letter.  I started to get a bit worried when I was told to schedule a core biopsy.  The core biopsy confirmed I had breast cancer.

My body felt numb – my mind went blank then started racing –  “Am I doing to die?”   “What am I going to do?”.  “I’m a single mom – my daughter is only 15.  How will I take care of her?”  I was told it was probably a small mass and I was informed of my options – a lumpectomy or a mastectomy.  I was determined to learn as much as I could.  I searched the internet and found valuable information I could understand so I could weigh the pros and cons of each treatment option.  I spoke with others who had been there.  Speaking with survivors gave me the confidence I needed to face what I had to do.  I knew it would be a challenge of a lifetime, but I believed I would get through it.  Being open and learning as much as I could about MY cancer helped me to keep moving forward.   In the end, I chose to have a mastectomy with a DIEP flap reconstruction.  A decision that saved my life.

The surgery took about 10 hours.  When I woke up in the recovery room the first question I asked was “How was the sentinel node” (the sentinel node is the first lymph node biopsied to determine if the cancer spread outside of the breast).  I was crushed when I learned it  and 5 others were positive.  To everyone’s surprise I had three tumors.  The cancer was spreading.   I was going to need chemotherapy and radiation.  Who knew?

Looking back I really hadn’t prepared myself for the post-surgery period.  Because of the reconstruction, I had an incision across my abdomen and 3 drains that had to be emptied and measured daily.  It never occurred to me that I might need help getting out of bed or that stairs would be a challenge.  A hospital bed made it easier to sleep.  Don’t fool yourself into thinking you can handle this alone.

The next step was to meet my oncologist.  I considered a clinical trial, but because I didn’t fully understand the program, I declined.  Knowing what I know now, I would have agreed to participate.  My oncologist said I needed “the big elephant gun” and was prescribed a dose dense regiment of 3 powerful chemotherapy drugs to be administered at the same time instead of the usual regiment of a 2 drug cocktail followed by 1 powerful agent.  I hoped my body would be able to tolerate the toxic assault.

About 10 days after my surgery, the drains were removed.  I felt like a new woman!  A week later a port was implanted in my chest to administer the chemo because the veins in my arm would never be able to withstand the dose dense regiment.

The following week I started my first chemo treatment. I was prescribed 6 chemo treatments, one every three weeks.  My hair started to fall out after my 2nd treatment.  It was very disheartening to wake up and see hair on my pillow each morning and to have handfuls of hair fall out every time I washed my hair.  I knew my hair was eventually going to fall out, so I decided to take control and have a head shaving party.  It was a small triumph for ME to choose when I would become bald, not the cancer.  It never occurred to me ALL of my hair would be gone – – including my eyelashes, eyebrows and nose hair.

One of my biggest fear of getting sick never happened thanks to the wonderful anti-nausea drugs.  Chemo does tend to give everything you eat or drink a metallic taste , so I didn’t have much of an appetite for anything except Starbucks mocha frapaccino.  I drank 3-4 every day.  Fighting extreme fatigue was also a daily battle.  Simple activities like taking a shower and getting dressed was just draining.

Chemotherapy destroys white blood cells  Not having enough white blood cells makes  your body susceptible to infections and germs.  A few days after each treatment I would return to the hospital for a shot of Neulasta to boost white cell production.  One of the side effects is excruciating bone pain that mercifully only lasted a few days.   I finished all of my chemotherapy at Christmas and was blessed to have a week before starting radiation therapy in January.  Happy New Year.

After chemo I thought radiation therapy would be a breeze.  Little did I know.  Radiation therapy was just as challenging as chemo, but in a different way.  Treatments were daily for six weeks instead of every three weeks.  The first two or three weeks weren’t all that bad, but after the 4th week my skin was very burned and hurt all of the time – similar to a bad sunburn.  The burn went completely through my body and I even had blisters on my back.

During this time I noticed I couldn’t straighten nor raise my arm above my head.  I learned I had “cording” from removing so may lymph nodes and was at risk for lymphodema.  Six weeks of physical therapy seemed to do the trick.  All was going well until about a month ago when my arm and hand started swelling and became quite painful.  I thought after five years I was in the clear.  Apparently not.  I started wearing a compression sleeve that does provide some relief.

I am happy and grateful to be a survivor. Cancer sucks – no doubt about it. Being a survivor changed my life in many ways and not all was bad. Survivorship has given me the opportunity to do something I’ve never done before – talk about cancer.  I hope by sharing my experience others will be motivated to get their mammogram screenings on time and to take action to reduce their risks.  I gave up my breast, my hair and a year of my life.  In exchange for those losses, I gained friends, peace within and strength from knowing I am a survivor.