Caregivers (co-survivors)

This section is for the special role of a caregiver or co-survivor. I am both a co-survivor and a pre-vivor. I cared for my mother along side my father as primary caregivers. It is a part of my life that has forever altered my character.

Table of Contents:
  • Definition
  • My caregiving story
  • Resources
  • Media
    The caregiver plays a key role in the patient’s care. Good, reliable caregiver support is crucial to the physical and emotional well-being of people with cancer. A caregiver is the person who most often helps the person with cancer and is not paid to do so. In most cases, the main (primary) caregiver is a spouse, partner, or an adult child.
    When family is not around, close friends, co-workers, or neighbors may fill this role. (American Cancer Society)
My Caregiving Story:

Below, is my address to the Susan G. Komen 2009 3 Day walkers.  I was honored to be chosen to speak. 

Good evening!
Before I start I wanted to acknowledge what a terrific honor this is to be able to speak to you tonight. This is my second consecutive year walking in the 3 Day and I have to say that this event is the highlight of my year.  My name is Megan and I am the daughter of a survivor.  I can’t think of a better way to honor my mother’s fight then share her story and mine with you tonight and with the world throughout this weekend. 
My mom is super woman.  Really!  She raised two kids, worked a full time job in a man’s field all while keeping a 4 bedroom house and playing soccer mom in the evenings.  Our house was so spectacularly clean I could eat off the bathtub.  There was nothing my mom wouldn’t do, didn’t know or couldn’t make happen.  I could only dream of having her energy and motivation in life.  Her spirit and amazing will could only be a gift from a God knowing the battle she was in for.  There came a day in March 2004, when superwoman almost met her match. 
I was a junior in college when I found out that my mom found a lump in her breast.  I called my mom on a Wednesday knowing that she had seen the doctor the previous day.  She wouldn’t tell me the news.  Instead I had to ask the hardest three word question known to man. “Is it cancer?” 
I held myself together long enough to end our conversation.   My mother in her infinite strength continued working after that phone call.   I on the other hand fell apart, called 2 of my sorority sisters and skipped class...for a week.  I wanted to know everything I could about this disease.  I wanted to know every fact, every statistic, every tragedy, and every triumph.  I dealt with my mom’s disease by throwing myself into her recovery.  I came home early from school that year so I could go with her to treatments and take care of the house and my dad so she could rest.   I finished my classes from her oncologist’s office while sitting there for hours on end.  And I planned my upcoming wedding with her nurse’s and doctor’s input as they stuck her with needle after needle. 
Treatment sounded so easy.  Insert a port, take 6 chemo treatments, and continue to get scanned every 6 months once in remission.  Well, nothing was easy about my mom’s breast cancer.  When she went to have her port put in, the surgeon nicked her lung and she had to be admitted to ensure that air was not leaking into her blood.  Her port only last 2 treatments before it became infected.  They tried to save it, but it had to come out.  She had a gaping hole in her chest that had to be packed and dressed twice a day.  They tried a deep IV in an effort to save her veins, but that got infected also just days after they put it in.   So she battled through needle sticks over and over again to try to find a vein that would hold the IV to inject her chemo drugs.  Before this experience I would vomit and pass out at the sight of a needle.  Now, I think I could start an IV with my eyes closed.  

While we struggled at home with my mom’s treatments, my family continued to be devastated by cancer.  My grandmother died of pancreatic cancer.  Two of my mom’s aunts were diagnosed with breast cancer and lost their brief battles.  And one of my mom’s aunts was diagnosed with ovarian cancer.  To add insult to injury, my mom’s best friend since college past away of lymphoma.  It seemed that we couldn’t escape the reality of this disease.  Everywhere we turned it was there to stare us down and try to stomp us out.  We needed to ban together as a family to support my mom emotionally.  I needed her to survive.  I need my mom.  
My mom’s treatments made her so tired she would sleep for days.  She wasn’t sick thankfully due to the advancements in the chemo drugs.  But the mom who used to thrive on 8 hour long shopping trips could barely make it to the supermarket.  Despite her setbacks my mom fought without a single complaint.  She never missed a day of work.  And even though I wanted to be her rock in this experience, unknowingly she continued to be mine. 
Part of her treatment regimen included a genetic test for the BRCA mutations.  There are 2 gene mutations that predict amazingly high risks of certain cancers.  The second most devastating day of my life to this point was the day she tested positive for BRCA 2.  She statistically had a 90% chance of getting breast cancer before age 70.  And I had a 50% chance of having this gene as well.  All the sudden the tables turned.    Despite her best efforts I didn’t test right away.  I didn’t have the strength my mother had to face my own mortality.  It took 2 years for me to woman up.  I met with a counselor to discuss my thoughts and feelings on the hypothetical results should they go either way. 

In April 2008 I got “the call”.  The test was positive and I needed to have an MRI immediately and meet with an oncologist to start a prevention regimen.  I didn’t know how to tell my mom.  So I called and asked for her oncologist’s number.  She cautiously asked why and I told her that I tested positive for the BRCA 2 and I need to meet with her doctor.   She cried.  For the first time in this entire time period, she cried; she felt like she failed, like she ruined my future.  But in a weird way, I felt like she just passed the torch, she passed on an opportunity for me to be as influential for someone else, as she was for me.  She opened the door for me to do something great with this information.  She didn’t fail me; she tested me so that I could start believing in myself and my own strengths.     
In the end, superwoman prevailed against breast cancer.  She won.  She fought a hard fight, lost a few rounds, but won.  Tragically, my mom passed away March 1st.  A year after she was cleared of breast cancer she was diagnosed with ovarian cancer.  And after 5 years of battling cancer, she died at home among her husband and children, and 2 granddaughters. 
My mom is a survivor of breast cancer.  And I will always walk in her honor, never her memory, because she is, as she always has been, with me every step of the way.
I am Megan.  And I walk because everyone deserves a lifetime. 


Caregiving Overview (American Cancer Society)
A Guide for a Caregiver
Links for the Beginning, Middle and End of Caregiving (National Cancer Institute) 
Online Support Groups