“Can you believe this?” asked a woman who has heard about an outrageous fake Go-FundMe fraud.
“Yes, I can. Because I know them. It is true,” replied my neighbor, Jacquie.
They were talking about us—my husband, daughter, and me, and our truly unbelievable and terrible series of tragedies that began with a cracked tooth.
Our First Nightmare
We don’t know how, but my husband, Robert, cracked his tooth one day. He was not bothered by it, and we were in the process of moving from New York to Rhode Island for a job change, so he waited a couple of months before seeing a dentist. He got a temporary crown.
Robert came home with a headache and slight fever, took Motrin, and went to bed. The next morning, I saw him get up out of bed and start dressing, as I was leaving for work. How I wish I had lingered longer. It was the last time I would see him do that on his own.
“I might have had a stroke.” The text came that day after lunch. I called him at once, but it was too late—my husband could not speak. A receptionist told me he was being transported by ambulance to the hospital. So began our first nightmare.
Over the next 3 months in hospitals and rehabilitation centers, I learned that my 39-year-old husband had a rare bacterial abscess, of oral origin, in his brain stem. He never recovered his normal speech. He lost the ability to walk overnight, and he had double vision because his eyes lost coordination.
After 2 years, Robert cannot use his hands for any fine-motor tasks such as writing, typing, eating, or doing electronics (he has a PhD in engineering). He is fully cognitive and has perfect memory, but he is trapped in a thoroughly trashed body. There is no deeper hell.
Then Came Cancer
The day that I found out I had cancer, I drove back to my house and sat alone in the car, wondering how I was going to tell my husband and daughter. My husband was in the care of a certified nursing assistant, or CNA. My good friend, Elaine, had driven 1 hour from Massachusetts to help watch my daughter.
These were the type of arrangements I needed just to be able to get to my medical appointments. The house seemed so dark. It was as dark as my world. As I walked reluctantly in, I first saw the CNA. Then Elaine appeared, just in time for me to break out sobbing.
“They think it’s cancer. How am I going to tell Elisa?” There was no time for an answer as my daughter appeared right away, wondering what was wrong. “Mommy got some bad news today, honey,” I said. The rest somehow followed. My dear friend took Elisa away to play, while I sat and cried with my husband.
In the months that followed that diagnosis, I had 3 port surgeries (because it became infected and needed removal and replacement), 6 rounds of “kitchen sink” chemotherapy
(4 drugs in each round), a mastectomy, 21 rounds of radiation, and then 14 rounds of chemotherapy with Kadcyla (ado-trastuzumab), better known as T-DM1, used for people diagnosed with breast cancer.
The Big Whammy: COVID-19
My chemotherapy was wrapping up when my daughter’s school shut down. The COVID-19 pandemic hit at the peak of my immunocompromised condition. I still had about 8 rounds of T-DM1 treatments to receive every 3 weeks.
My mother-in-law lived with us for the first 6 months after Robert fell ill, but she had to return to California. She was there when I was diagnosed with advanced-stage breast cancer. All our relatives were in California when COVID-19 struck. And we had no family in Rhode Island.
My husband’s caretakers (a few hours per week) became a risk to allow in the house.
We lost playdates, which were the few breaks I had to rest while my daughter was happily releasing energy. Robert was still not physically capable of even playing or watching her independently for any period. I felt so alone.
Although I have often been asked, we could not move to California to be near family, because my job, as a professor of biology, was based in Rhode Island, and I was suddenly the breadwinner. I certainly needed the health insurance benefits.
Even if academic positions were not so hard to get and transfer, I wanted stability for our daughter—to keep the home my husband and I had always dreamed of at least in the short- term. For the long-term, I love being a professor, and I love the life I can give my daughter in Rhode Island. But my sick leave was used up. I had to work now.
I was able to work online, teaching 112 students. The flexibility of working from home helped a lot. We also had help from unlikely places: neighbors who went out of their way to extend a hand. They dropped off groceries. A few of them stepped up to watch my daughter (wearing a mask and staying outside) when I had to get chemotherapy.
Friends from middle school and high school set up and sent donations through the GoFundMe account. This helped me to pay the medical expenses and mortgage, while filing forms to refinance our home.
After a few months, I hired a babysitter from www.care.com. She wore a mask and stayed outside with my daughter until my chemotherapy was complete. This was expensive ($20 per hour), and I had to ration those hours.
Like so many parents in the COVID-19 era, I took on the education of my daughter. There were some good days, but my oh my, there were bad days. She hated sitting in front of our zoom room. She cried about hating school. A professional educator probably never struggled so much to teach kindergarten.
To cope with isolation, I created my own site on Caring Bridge (www.caringbridge.org), an online site that lets people build their own site, where donors, friends, and family could stay in touch with updates about me and Robert. I found comfort in nature whenever possible.
We started weekly family zoom calls with relatives in California. We joined an international Hope for Ataxia support group. I took a “sustainable caregiver” course based at the University of California-San Francisco. Our geographical boundaries flexed with help of online technology.
Finally, as I watched my science career crumble, I sought temporary refuge in art. I painted a wall in our home (a family portrait still in progress). And I wrote a poem I called “Cancer, you can’t,” which I wish to share with you.
"Cancer, You Can't"
Call me all you want, cancer. I will not answer.
Cancer, go ahead. Have my hair. I will grow it back. Take my tastebuds, torment my stomach, and taint my skin with bruises and rashes. But cancer, you can’t stop me from rising out of bed, and breathing, and learning, and loving my family.
My daughter and husband need me. We have big plans. We are going to Disney World. And then, we will go to Paris. We may even bike in Tuscany. I’m not sure. I am only sure of this—I am going to talk and read and walk with my husband and dance and sing and play with my daughter, every day…for years.
Cancer you may concern me, but you cannot really scare me. I have seen true terror and it does not look like you. I have stood upon Death’s door, and peered in his dark windows, and he’s made it clear—he will not take me in.
Cancer, you can linger, but you cannot stay. My doctors will poison you, excise you, genotype and ablate you. Every time you try.
So, sorry cancer. Go ahead, tear away at my breast. Hell, help yourself—have two. My baby has outgrown them. They served her well. And if I miss them, then I’ll rebuild them, maybe even better.
So, that’s all you can have cancer. Everything else is mine.
Gloria Gemma Breast Cancer Resource Foundation