Today’s testimony comes from Carol Miele. I love her no nonsense approach to life and how she encourages us all to “live our best lives” despite living with a giant time bomb. She is also a gifted writer and has authored two books, Metastatic Madness and Kicking Cancer to the Curb.
Can you share with our readers what your life was like before you were diagnosed with metastatic breast cancer and how you got to the stage IV diagnosis?
My career was coming to a close as I contemplated retirement in January 2010, right after my 65th birthday. It was exciting to think of the freedom I would have after 45 years in a nursing that was as exciting as it was exhausting. In those 4 ½ decades, I’d gotten married, raised 2 daughters, became a grandmother, travelled a little, worked hard, earned both a BS degree in Nursing Education, a Master’s degree in Public Health, and settled into a 3-level chalet on a wooded acre in the Pocono Mountains of Pennsylvania. It was in the heart of ski country, where we lived for 35 years.
Preparing for retirement, I decided to start with a clean slate. After emptying my file cabinets at work and tossing, shredding or passing on pertinent documents, I started to clean closets, storage spaces and a lifetime of files and records that accumulated at home. It felt good to purge those old papers! It was a symbolic gesture to shed the years behind us while readying for the golden years that lie ahead.
This notion was to be short-lived. I had just recovered from cervical spine surgery, an event I hadn’t seen coming, when I discovered a long breast mass while in the shower! With fibrocystic breasts, I had gotten used to the lumpy, bumpy terrain of my breast tissue. But this time, there was an intense itchy sensation that I followed very deeply into the breast tissue on the left side. It was large, hard and felt so foreign! This definitely was not normal. How did it get in my breast tissue?! Testing showed invasive carcinoma with a large lobular tumor on the left, a small ductal tumor on the right and bone metastasis in eight locations…growing for years and missed on every mammogram due to dense breast tissue! Shocking… bone deep, jaw-dropping shock!
What is your official diagnosis? Tell us about your current treatment .
Following several months of chemo, I went into remission. Since I’m ER/PR+ and Her2-, I’m maintained on hormone therapy with letrozole daily and Xgeva injections every 3 months when I see my Oncologist. Pet Scans are every 6 months; I’m currently NED (no evidence of active disease). My main symptoms are joint aches and pains, muscle stiffness, backaches with any prolonged walking, standing or vigorous activity, slow but incremental weight gain, and fatigue by mid-day that passes. Otherwise, I’m doing well and am fairly strong and active.
How has cancer changed your life? Did you have one pivotal moment or has the journey been one of progression and growth?
Cancer changes everything, or at least your perspective of everything! There is nothing you can think of or ponder without looking at it through the lens of terminal cancer that has an expiration date. While you may not know exactly when that it, you are living life with a giant time bomb strapped to you. Tick, tick, tick! If there was one pivotal moment that turned things around for me, it was on my first day of chemo. I met a young woman completing her last round of chemo who told me before she left to put cancer on the end of my foot and kick it to the curb! She urged me to live my life fully and forget about my diagnosis when I left the cancer center to go home. Best advice…ever!
How do you live your best life now, thriving with a metastatic diagnosis?
My husband and I moved from the cold, frozen winters of the northeast to sunny and warm Florida. We traded in our 4-wheel drive for a hot red convertible. I began painting portraits and wrote my 2nd book* about my experiences with Stage 4 breast cancer. We traveled to Italy for our anniversary, Hawaii for my birthday, a Caribbean cruise for my husband’s birthday and other trips just for fun! We now have four grandchildren who light up our lives fill our hearts. We intend to make the most of whatever time I’m fortunate enough to have.
What makes you most happy, and where do you find the most joy? Is this different than BC (before cancer)?
What makes me happiest now is just a normal day with no appointments or tasks to do…to wake up, stretch and thank God for the new day and do whatever I want to do, maybe nothing but read a book or do a painting. Just snuggling with my dog and having my husband come over to kiss me on my neck ever so gently is all I need to make me happy. There are days we clean, but my husband Gene helps with so much around the house that I don’t feel the weight of those tasks that once consumed me. He shops, cooks, vacuums and mops!! This is different for me. Before cancer, I got up and mentally listed all the tasks I had to do and felt weighted down by them before getting dressed for the day!
People mean well, but often they don’t know what to say, so they say the WRONG thing. What is the worst thing someone has said to you? And what is the best way someone can help?
‘I know you. You can beat this!’ Most people need a crash course on the terminal nature of MBC.
If they don’t know how to help, tell them. I think most people would be grateful to know exactly what you need in the way of help. Get rid of the pink elephant in the room and give them some tips or a written list & let them choose what they can do most easily.
Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?
Yes! We are victims of our less stricken sisters….a hard act to follow. So, we shouldn’t follow them. We shouldn’t have one day (Oct. 13th no less…..how unlucky is that number?) set aside for us. That just underlines how little we are thought of. I kind of like the ‘mets Monday’ concept because it’s infinite.
Do you think our cure is near? Or what one scientific advancement in the treatment of MBC do you find most encouraging.
No, I don’t think so. I think they’re on the right track with the immune system & vaccines, but I doubt I’ll see a cure in my lifetime. I worry there isn’t enough incentive to cure a disease that has spawned a billion dollar industry. Big salaries of the corporate types leading the charge, powerful & rich Big Pharma, money being thrown at everything but MBC….it can go on forever!!
Do you have a favorite poem, song, quote, or work of art that you would like to share with us.
My favorite poem is one I wrote in my 1st book and is the title poem:
M e t a s t a t i c M a d n e s s
By Carol A Miele
You have to be half-mad
To live with this disease,
It seems to have a way
Of bringing you to your knees.
Cancer cells invade your body
And soon they settle in,
Uninvited and unwanted,
The beast beneath your skin.
The big bad chemo drugs, like a tsunami,
Blew it all away.
But like the worst kind of nightmare,
It will return someday.
You don’t know when, you don’t know how,
You only know it will,
So you clean out closets, throw away old papers,
And update your Living Will.
People say, “We’re all going to die,
…each one of us.
Tomorrow, I could go out,
And get hit by a car or bus.”
If I stepped off a curb,
And got mowed down by a truck.
How quick an end that would be,
Not an agonizing one, just my luck.
Treatment means constant oversight,
By my oncologist and her team.
I accept that I must comply,
But inside I want to scream.
And all the while I pray,
It won’t ruin my life plan.
I’d like to see my grandson,
Grow up to be a man.
And see my friends and family,
For just a little longer.
Doesn’t seem like much to ask,
From the ‘evil cancer monger‘.
Tumor markers, cancer antigens,
Scans and other tests,
Rule my world like the cancer,
In my bones and both my breasts.
The truly maddening part is that,
One day it will spread too far.
How will I cope as I begin to fade,
Just like a falling star?
No one knows what lies ahead,
As we don’t have a crystal ball,
All we know is we want someone,
To catch us when we fall.
Carol A Miele is the author of Metastatic Madness published by Xlibris in 2012 and Kicking Cancer to the Curb, published in 2015. She enjoys the creative arts, writing and painting, with her ever present dog Flora at her side.
We would love it, if you could share Carol’s story to your greater community. Be sure to use the #voicesofMBC hashtag. And as always, I would love to hear your story as well. Contact me at @Lkailani@gmail.com