Carole's story: I've never known 'normal'
"It’s struck me as ironic that a girl who has craved a normal life has experienced a life that has been anything but normal." From the age of 25, Carole has experienced it all: multiple cancer diagnoses, high-risk pregnancy, and the birth of twins with autism and intellectual disabilities. Today, she shares her endless pursuit for a 'normal life'.
When cancer struck at 25
My husband Clay and I had been married a little over a year when I was diagnosed with Hodgkin’s Lymphoma. I knew no one my age with cancer. I felt so weird, and as we had recently moved to St. Louis, I had no close friends or family nearby.
This was 1991, there was no social media and long-distance calls (yes that was a thing) were expensive. At Stage 2B, Carole did 6 months of MOPP ABV chemo - a treatment that was very toxic but had a 95% cure rate.
After 6 months of chemo, I was in remission and quickly attempted to get back to life as a normal twenty-something.
Baby fever after cancer
When Carole turned 30 (5 years after her Hodgkin’s diagnosis), the baby fever struck. Although Carole had been told that fertility could be an issue, she was expecting her first daughter Blaire. When the couple decided a few years later to welcome a new addition to their family, normal was quickly thrown out the window again as they were expecting identical twins, Paige and Mia.
We had no history of multiple births in our families, and what woman gets spontaneously pregnant with twins after aggressive chemo that could have left her infertile?
Carole admits that life was insanely complicated with 3 daughters under 3 years old, but they seemed to be doing fine - except that it wasn’t too long before the couple noticed the girls weren’t meeting their milestones.
At age 2, our precious babies were diagnosed with severe intellectual disabilities. At age 5, autism was added to their diagnoses.
The mum of three shares how the years that followed were marked with many emotions.
Fear, anger, exhaustion, stress, worry, you name it. By 2017, my husband and I ran out of gas caring for our special daughters. After much searching, we found a home group nearby, so we could get a break from the daily care of our girls who, even at 17, needed help with personal and life skills.
When cancer returned
Carole returned to work full-time that spring. Finally, the couple thought it was a chance for them to reinvent themselves and start restructuring their lives.
In May 2017, I was diagnosed with a Granulosa Cell Tumour, a rare Ovarian Cancer. I had a hysterectomy and at Stage 1A, I didn’t need chemo or further treatment. I applauded myself on my cancer fighting skills and was ready to move on with life.
In July of 2018, Carole found herself sitting in a free-standing ER as she heard the news that Ovarian Cancer had returned with vengeance.
I always felt I was in tune with my body, but I had ignored symptoms since my last CT scan: bloating, heartburn, exhaustion and basically developing a belly that looked like I was pregnant again.
Turns out that Carole's cancer had morphed into this horribly aggressive Tasmanian Devil type cancer, called dedifferentiated Granulosa Cell Tumour.
I had a belly full of fluid that had to be drained 3 times before my surgery. My doc removed most of my tumour (5 lbs), but I didn't want him messing with my bowels.
Carole stressed that she did not want any type of bag waiting for her when she woke up. So the doctor got what he could, and they started EP chemo four weeks later.
After my scan in November, I was devastated to discover that not only had the chemo done nothing to halt the remaining disease, but I had new tumours growing in my liver! Because I will do almost anything to keep living, I got a second opinion and took on Chemo 2.0.
So far, the protocol is working. Carole has had 9 treatments and the nodules that are left are getting smaller. She is now moving to a 33% dosage reduction due to concerns over bone marrow toxicity and neuropathy.
The silver lining: what has cancer taught me
Here I am writing to you today, a girl who craves the status quo, but finally realises she is probably not going to get it. Although I would NEVER have signed up for this, I look back to think about how cancer has affected me.
1. Cancer has truly increased my faith
I am a Believer and I see that God has never left me during this trial. He’s provided me with friends and family that have been eager to help me out with food, transportation, a shoulder to cry on or whatever I need.
Carole made a commitment to do Bible Study and pray each day. She claimed it makes the rest of her day so much easier and better.
I’m still a private person, but I have experienced the joy of deepening friendships that I would probably not have made if cancer had not shown up again.
2. Cancer has caused me to make health changes I was unwilling to make
I drink way more water and have now basically cut out diet Coke. I get on the treadmill and do the weight routine several times a week.
Carole admits that exercising gets harder around chemo.
I stop right after treatment, and the minute I feel better, I try ramping up my routine again.
3. I have been blessed with a sense of humour
Even when things are awful, I can find something to laugh about. My humour is not for everyone. It’s quirky, raw and odd, but it works for me.
The ovarian cancer thriver admits that this battle has taught her to cultivate a positive attitude.
It’s funny, but when I had a cancer that was 95% curable, I was depressed, angry and fearful most of the time. I’m a much more fun person to be around this time.
4. Not sure if it’s just age or experience, but I truly am happier now
I appreciate the fact that I have lived almost a year since I’ve found out the cancer returned.
During that time, Carole saw her oldest daughter graduate from college, took her on a graduation trip to San Diego, and got her settled in to her apartment in Nashville.
I don’t know how much longer I will be on this earth, but I do know I can try to get as much as I can out of every day. That’s one of the reasons I had a floral cross tattooed on my lower right leg last week. I didn’t want to regret NOT doing it. Hopefully I will have many days ahead, full of life.
Try to live as normal a life as possible
When asked what words of wisdom she had for other cancer thrivers, Carole said:
Develop a routine and stick to it.
As quickly as you can after surgery or treatment, get up and move around.
Do whatever you can, even if it's nowhere near what you did before cancer.
Carole claims that working part-time has been a huge blessing throughout treatment and made her feel as if she had a purpose.
knowing I have meaningful work to do, social engagements, and I can help my family out by earning money has made me feel useful.
Carole and Mel