Caregiving: A Love Story

I wanted to take a moment to share my love letter to the caregivers in our lives, family or chosen, who perhaps unbeknownst to them, are the ones who give us the strength to put one foot in front of the other day after day.

Cervivor Erica’s husband JR, had talked with Cervivor here about his feelings of helplessness but through his unique caregiver lens you feel that special bond that forms when a family is faced with such a life alerting shift.

Love may conquer all but that doesn’t make it less challenging or painful for caregivers. I won’t pretend to know what it’s like for my caregiving team but my husband, my children, my parents, my brother and my village do more for me than they may ever know.

After my second surgery left me with no bladder or colon, my then fiancé became my nurse. In the hospital, he recorded the Wound Care nurse demonstrating bag changes. Then at home *he* was the one who changed my poop and pee bags for months. While I screamed in frustration trying to do it on my own, he just held me and reassured me that I could do it. And eventually I did.

He also sat beside me and held my hand each time my oncologist told us of a reoccurrence or metastasis. We’ve cried together, and apart. It is exhausting and overwhelming for both of us and that’s why I’m so grateful for him.

My children, who each moment provide me with love, are who I fight so hard for. My children may be adults but that does not make this any easier. This caregiving thing wasn’t suppose to happen until I became very old. I want nothing more than to continue to be here with them to share the big and small moments life brings.

My parents and my brother, along with my chosen family, constantly support me. They are there each time I am hospitalized, they take care of our pets when we cannot, they lend a shoulder to cry on, they summon prayer warriors in my name, they have raised an insane amount of awareness and dollars for causes I care about, they never miss an opportunity to celebrate with me and they love abundantly and without hesitation.

These people, whose love touches my heart so deeply, are MY HEROES. This life would not be worth fighting for if they were not here. You give selflessly; you are my joy, my peace and my strength.

Whomever you surround yourself with during the hard times, know that their love is unconditional but they struggle with watching someone they love suffer and they want more than anything to help get you to the other side of your pain. Keep the door open for those who feel like sunshine.

A beautiful quote that sums up caregiving to me is this one…

“When you go out into the world, watch for traffic, hold hands and stick together.”

Carol is an 11 year metastatic, recurrent cervical cancer thriver and Lead Cervivor Ambassador. She is also a double-ostomate and is passionate about dispelling stigmas as a cervical cancer survivor and ostomate.

How One Cervivor Marks Important Milestones

On May 26, 2017 I found out my entire reproductive system needed to be removed when I received a cancer diagnosis over the phone: grade one endometrial cancer. The gynecologist said I would receive a call from oncology that day and that they were deeply sorry. One week prior, I’d received an acceptance letter into the accelerated MSW program. The start of that semester was not to be. I had hopes to begin the following cohort. 

Lorie’s original diagnosis

I was wheeled into surgery in July, eyes still damp from tears. Within a week of surgery, I received news that my grade one endometrial cancer was instead invasive grade two cervical cancer. Oncology apologized for the unexpected diagnosis. The tumor board suggested daily high dose pelvic radiation with concurrent weekly platinum chemo. I stood up, holding my entire post-surgery swollen abdomen and pelvis, agreed to it all, and left. I called my master’s advisor and said the treatment would continue through the beginning of winter. I found it difficult to breathe and I couldn’t hear what she said, except that she was terribly sorry. It wasn’t just the additional news of the treatment. It was the news coupled with the fact that I had already lost so much prior to this. I’d just spent a week in the hospital before my diagnosis due to severe asthma attack and had to rebuild my lungs. I had put myself through school for all my previous degrees (summa cum laude with my most recent), while co-managing a department and staff, while supporting my household which we lost to foreclosure after my partner lost his job (packing instead of going on a honeymoon) and staying with my mom months at a time to care for her after each of her falls. 

Lorie’s final diagnosis

I continued to focus on my dreams, even after my department closed to a college-wide restructure, my health deteriorated, and I lost my mother. The MSW dream wasn’t meant to be, and it was the first time in my life I couldn’t make the impossible possible for myself. I did not tolerate treatment well. In fact, the following years were spent dealing with the fallout from the radiation and now small nerve neuropathy from the cisplatin. Still, during this time, I became a cervical cancer advocate. Word got out, and I would begin to receive calls from strangers whose loved ones were at end of life. I would hold the hands of the dying after driving to their homes and hospitals. I used my adult-ed teaching and training to raise awareness and educate the community about cervical cancer.

Lorie with Bella striking their Cervi pose.

There is more on the horizon that only those closest to me know about. I am also due to have another major surgery to my abdomen soon and the level of fear is exquisite. Through everything, I am still grateful knowing that I find beauty in the lakes and the trees. Comforted, that I am a part of a community of survivors who hold space for each other. Although my actual cancerversary is November 1, the day I completed treatment, this month I remember the three words that changed my quality of life forever. 

Lorie is a three and half year cervical cancer survivor, thanks to life-changing surgery and cancer treatment. Prior to her diagnosis, Lorie worked in research, employee training and development, case management, workshop facilitating and sales. She now dedicates herself to cancer advocacy and support, community education on cancer and HPV awareness as well as elder and animal rights. Lorie is a community member of Cervivor.