Caregiver's

Crucible

Caregiver To a Cancer Survivor

My Kimi

She was my Mohican, the last birth child I planned to have. She was a very early preemie and weighed just 3 pounds when she arrived. She was born on June 5 but wasn’t due until August 27. She was tiny, but she was a fighter. She gained weight rapidly, was removed from the incubator, supplemental oxygen was removed and within 3 weeks she was home…barely weighing 4 pounds. She fell and gashed her eyebrow when she was a preschooler. In second grade, she was hit by a truck and suffered a hairline skull fracture. There was always something going on with Kimi. But we made it.

She made it, we made it until the December day in 2019 when she was 38 years old. When I answered the phone, she quietly said, “Mommy, I found a lump in my breast.” Her tone said she was afraid. I was afraid. Her siblings were afraid when they heard the news. We made plans to shave our heads in solidarity with her since we concluded that ALL who get a cancer diagnosis lose their hair. We were her support team!

We waited for test results, hoping for the best and fearing the worst. The call came.

“Mommy! It’s benign!” “Wait! It’s benign?! Hallelujah and thank you, Jesus!” Our entire family cheered and heaved a sigh of relief. But she still had pain and could not let it rest. She made an appointment for another opinion.

A punch biopsy was scheduled, and she made a request of her doctor: “When you get the results, don’t make me wait for them. Just call me, please?” The call came on New Year’s Eve. It is malignant.

“Malignant? How? The first exam said benign, though.”

“I know. They missed it.”

The Diagnosis

“Thank God, you went for another opinion! What happens now?”

As she outlined the course of treatment she’d been given, I knew I was going to be there. I’m her mom. She was not going through this without me. I had no idea what the courses of chemotherapy and radiation would be like. Would she need surgery? What course was she going to choose? I couldn’t tell her what to do. It was her journey. I was just a support person. How little I knew about her diagnosis and being a cancer support person/caregiver, we would discover together.

When she chose her treatments and I asked when they started, she said: “Mommy, you don’t have to come. You just got home. I’ll be okay.”

Seriously? I had to be there for her—for myself, so I packed for an extended stay, closed my house, and headed back to Alabama, back the hundreds of miles I had crossed just a few weeks earlier. I understood the words of the diagnosis of triple-negative invasive ducal carcinoma, and not much besides. Ports, surgeries, and “the red devil” chemotherapy drug they hoped would kill the cancer cells and not my child. I didn’t know how much she would suffer with each treatment. I didn’t know how much I would suffer. I didn’t know about the fear—hers or mine. Fear of death from the drugs, death from the disease. I didn’t know about anything.

I felt totally helpless from week to week as we went through the cycle of chemo treatment, white blood cell loss, the pain of generating new cells, and relentless waves of nausea. Those were just part of the routine. When her hair started to fall out, she asked me to take her to her salon--where they shaved her head. I wasn’t ready for the new look, but it was so cute. Her head was cold. Her nails turned black and started coming off. What do you say? “I’m so sorry.” How many times, though?” Keep saying it.

And then I’d say the wrong thing. I’d try to encourage her, to lift her spirits, and she’d say, “Mommy, I don’t need that. I just need you to be a soft place for me to land.” That meant that I had to get to know my child as a patient, and hear Kimi, the patient, as her caregiver and not with my "mommy brain".

Why God?

Then, Covid-19 hit and we went into isolation. Why, God?

As if He heard my question, He sent His answer through Kimi. She had been asking God her own why question. Since she didn’t have the breast cancer gene, and they could find no lifestyle reason for her having this diagnosis, Kimi wanted God to give her a reason for it…to give her life a purpose.

In her quiet time with Him, God planted the dream for Kimi’s Closet, a non-profit organization that would provide help and support to women of color primarily because on her journey she learned that there are disparities in the care provided to women of color. There are also disparities in the types of support and help these women receive. She was to make a difference for some of her Pink Sisters.

After weeks of unrelenting nausea, insomnia, port problems, anemia, constipation, anger, frustration, and all the stages of grief, Kimi rang the bell indicating the end of her chemotherapy treatments on June 19, 2020; I thought, "Whew, we made it!" But no, we just finished chemotherapy. The rigors of radiation lay ahead. It was grueling. Covid meant she had to finish chemotherapy alone and now she had weeks of radiation. It wasn’t fair!

She rang the bell, but we learned that it doesn’t end with the ring.

The role of caregiver to someone with a cancer diagnosis never ends. Not really. Why? Because even with a “cure” the fear of recurrence remains. The patient and caregiver remain vigilant. You talk and plan. This was the hottest crucible of my life! I’d faced the prospect of her life ending a few times since her conception, but this was different. This time she saw the prospects I did, and we faced the unknown future together.

I made many missteps that I will share with you. I had some successes, too.

Today, 2.5 years later, Kimi is still showing no evidence of active disease. She is speaking out for other women and the men who battle breast cancer. And I keep cheering her on, learning how to support her journey. This journey brought us closer than we’d been in recent years. It gave us a chance to get to know each other as mom and daughter who truly are supportive friends---most of the time.

If you are a parent, not just someone who has a child with whom you share DNA, you are a caregiver. That’s a reality parents just accept.

Caregiving for mothers begins the moment we know we are pregnant. For fathers, it begins the moment he gets the news, “I’m pregnant!” “We’re pregnant!” “We’re going to have a baby!”