Caregiver

My Life As a Caregiver

August 27, 2007 will forever be etched into my mind. 

Not only was it my Mom’s 62nd birthday, but I had just found out my Mom had Stage IV Lung Cancer (NSCLC) and of course I was beyond devastated.  She assumed it was stage 3 which can still be cured and was so excited by the news.  The surgeon’s nurse said “Your mom didn’t ask what stage it was so I didn’t tell her.  She will find out soon enough.”  

I called my father and we along with my brothers decided to let the doctors tell her when we went for the next appointment.  It was the hardest few days of my life not being able to share my agony and profound devastation with the one person who always understands, my mom.  From my limited knowledge on the subject I was sure her death was imminent.  We would lose her in a few short months. And I knew I wouldn’t be able to handle that. She was one of my best friends.   

Both of my brothers have kids, but I had just gotten married 2 years before. My husband and I were planning on getting a house and to start having kids that year, cause there wasn’t any rush. All of a sudden, all I could think of was “OMG my children will never know the most amazing woman, mother, wife, grandmother and friend that I’ve ever known!!!” And that was just unacceptable to me. But then I remembered two very important things she and my father always taught us kids. Knowledge is Power and you MUST be your own advocate. She was mine when I was in Sloane Kettering at age 12. 

After experiencing pain and other symptoms (and being told by our orthopedist that it was GROWING PAINS), my parents didn’t just ignore my complaints and eventually we ended up at Sloane Kettering. The doctors at Sloane found a tumor in my tibia bone. They were sure it was bone cancer and all the tests showed it had spread. But when they did a biopsy, they found the tumor and removed it instead. After testing and finding the malignancy hadn’t spread as the previous tests had shown, they were shocked and couldn’t explain how 3 different tests could be wrong. So I am a case at the Mayo Clinic for the Unexplained Medical Phenomena. One thing they were sure of though was that if my Mom hadn’t persisted on my behalf I would have definitely lost my leg if not my life. The only scar I have is about an inch and looks like a shaving scar. Crazy right? 

So I went into researcher mode and found a ton of information through some great books, websites, booklets, articles and support groups.  So when she did find out 4 days later, that her cancer could go into remission but would never be cured, I was ready.  I showed her stories of people with her same illness that now have been living for 5, 10 even 15 years with Stage IV Lung Cancer.  She said the greatest gift I gave her that day was HOPE.  

So when my family and friends, especially my Mom and Dad, told me how amazing I was in helping her, it’s only because she taught me how. And because of the Lung Cancer Alliance support board I remembered that doctors are great and statistics are fine, but doctors don’t know everything and statistics are just numbers. You MUST HAVE FAITH!!!!
 
If you believe you’ll get better and fight for it, I think you can definitely beat the odds for a lot longer than if u just give up.

And also EVERYONE at Memorial Sloane Kettering Cancer Hospital in NYC was so truly helpful throughout everything from her initial diagnosis to even making sure the insurance company pays the bills.  It’s about $10,000 just for each chemo treatment.  Crazy, right??

We thought about going to the Sloane Kettering facility @ one of the Long Island facilities, but heard mixed reviews.  I pulled aside the head nurse of the Chief of Thoracic Surgery at Sloane in NYC and asked her if it was her mom would she trek all the way in to the city or go the easy route and stay closer to home?  She said without a doubt, she’d trek to the city to give her mom the best care with the best specialists.  My parents, brothers and I all agreed and we’d take turns going in whenever possible. My Aunts, Uncles and cousins helped out too.   But for the most part it was me, my amazing hubby and my parents.  

It was tough because she broke her ankle and was in bed with a cast, got shingles, pneumonia and pulmonary embolisms. We almost lost her twice that year. My Dad and I did pretty well most days, but it was hard.  When we got overwhelmed, I tried to remember how my Mom must feel.  She was always so strong and independent.  I cannot fathom how out of control she must have felt.

It really does give you an amazing feeling helping others, especially loved ones.  I finally understand why people donate so much of their time to great causes.  It feels great to give back.  You almost get more out of it than those you help.  

A year since Mom’s diagnosis and Mom was doing great!!! It had been a rough year, but all 3 of her tumors in lungs were GONE!!!! She did have a spot on her liver, so they had put her on Tarceva, which they thought would shrink it. After that it was a runaway train that couldn’t be stopped.

It was a big shock and there was a lot of ups and downs.  But there was also a lot of love and laughter. My Mom has been gone for over 6 years. I am so glad that I had all the time with her that I did. We knew she didn’t have years to live, so we made each day count. I miss her so very much but I’m happy she’s at peace and no longer sick.

I am so lucky to have had her as a Mom. She wasn’t just my heart, she was my best friend. I miss her smell, her adorable little face, her smile and her laughter.

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24 thoughts on “Caregiver

    • emmagc75 says:

      Thank you. I get an amazing capacity for empathy from her. Thankfully we’re also intuitive and even the most cunning of narcs set off warning bells that I have learned to never ignore. Sorry for the loss of your best friend. Cancer sucks. Hugs to u!

      Liked by 1 person

  1. XandrewX says:

    Thank you for sharing, I’ve read your previous family anecdotes about her and your mother comes across as a lovely woman, I’ll never forget the one where she sat your brother’s down giving them a list of don’ts when you were first diagnosed with depression, I guess that’s mother’s for you always caring 🙂 x

    Liked by 1 person

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