In Kathy Giusti’s empowering and deeply personal book Fatal to Fearless: 12 Steps to Beating Cancer in a Broken Medical System (HarperCollins, 2024), she details the shock of being diagnosed with multiple myeloma, in 1996, at the age of 37. Told she had 3 years to live, the book recounts how Ms. Giusti overcame her fear and learned how to successfully navigate the challenges of a life-threatening cancer diagnosis in a fractured health-care system. In this excerpt from her book, Ms. Giusti writes about her experience undergoing an allogeneic stem cell transplant with donor cells from her twin sister, Karen Andrews, and the caregiving and loving support she received from her husband, Paul.
We were at the hospital’s check-in station, back to signing the same endless forms on the same famous clipboards repeating the same information I’d given the center for years. We were then taken to an outpatient area, where a resident placed a central line called a port in my chest just above my heart. This was how they’d deliver the chemotherapy and Karen’s stem cells. With Paul beside me, I was wheeled up to the small, cheerless hospital room, where an unbelievably kind team of nurses did everything possible to make us comfortable. It was clear they’d watched this scene unfold among many anxious patients and caregivers.
Paul organized what personal items I could have, including my laptop, which would connect me with the kids and anyone following my progress via the CaringBridge site. He replaced a generic landscape print hanging on the wall with the kids’ collage. It was the only symbol of life in this isolating box of a room where I’d be the experiment and my cancer cells would be scolded and punished, hopefully beaten back into a remission of sorts. Transplant floors are special places with extra precautions in force for patients who are at their most vulnerable. I would not leave this room for three weeks.
Chemotherapy and Stem Cells
Complications started on day 2. My port got infected, necessitating antibiotics right off the bat. One day later came melphalan, the high-dose chemotherapy. Melphalan goes after every myeloma cell in your body. These chemotherapy drugs do not discriminate; they basically attack every immune cell. The high-dose melphalan is what makes the transplant so hard. You know your body is going to react; you just have no idea how badly. Then once the melphalan has done its killing, it’s time to give you those precious stem cells back. Those stem cells will grow into healthy immune cells that will protect you from this day forward. The transplant regenerates both blood and immune cells.
In some ways, the transplant itself was anticlimactic. The life-saving infusion simply went through the port in silence, and there was nothing to watch unfurl within me. Such a small act with incredible promise. And that’s why the doctors and nurses remind you that it is a big deal. As I received this precious piece of my sister on what is called day 0, my medical team all sang “Happy Birthday” to the dawn of my refreshed immune system. I quietly celebrate that new birthday, January 23, every year.
Next, we waited to see how my body would react to Karen’s newly transplanted immune system. While we were identical twins, we had small changes in our genomics that might generate graft-vs-host disease. In graft-vs-host disease, the donated cells view the recipient’s cells as a threat and attack them. The result can be dangerous and has to be carefully monitored by the transplant team.
Caregivers at Work
As my donor, Karen had the first caregiver shift, while Paul went back home to deal with work, the kids, and all their ongoing activities that didn’t stop for cancer. She helped me fight through the nausea with ice chips and distracted me with Oprah and Ellen on TV. I was getting more tired by the day but holding on.
A few days in, the hurricane hit, just when Karen was passing the baton back to Paul. I descended quickly into a hellacious morass of symptoms as my immune system sputtered through the effects of the transplant. Friendly fire. But it felt like I was on the brink again and at the mercy of my body’s inner brawl. The sensations were so intense that it was hard to distinguish between hot and cold, pain and paralysis. In a desperate attempt to get the fever down and manage the GI issues, I lay in diapers on frozen sheets of ice packs with my teeth chattering as the doctors and nurses tried to comfort me. Another angry rash covered my body. I feared the tiniest of movements, not wanting to disrupt any of the machines, tubes, and hands holding sway over my ravaged body. I was totally out of it—the ragdoll listening to all the hushed chatter among the nurses and doctors around me doing what they could to keep me settled and safe. Although everyone seemed calm, I sensed their concern.
Because I couldn’t bear any light, the room had to be pitch black. And quiet. I lost track of time, to the point that it became a meaningless construct as I drifted in and out of sleep and semiconsciousness. The comings and goings of the nurses and doctors were constant. Ken Anderson dropped in occasionally to check on everything and say I’d be okay. The revolving nurses tried to be discreet and nonintrusive.
“Hey, Kathy, I’m just checking your vitals.”
“I’m here to change this IV . . . this will only take a minute. Kathy, we’re doing everything we can to get this fever down.”
In brief moments of lucidity, I thought about how much I missed the kids and how terrifying it would be for them to see me like this. Paul never left my side, holding vigil in the nearby recliner, sitting in the dark all day long. The only moments I truly remember were the ones when I turned just enough to see if he was still there when I felt like I was dying and barely able to breathe.
“I’m still here,” Paul quietly said to me. “And I’m not going anywhere. I promise.”
I would have lost it if I hadn’t seen Paul in that chair to help me. I would have lost it if Karen wasn’t home checking on all five cousins and getting them together. The mighty five, as we’d come to call them, could get one another through anything. I would have lost it if my friends weren’t keeping things normal as best they could while the battle of my transplant took me down. No matter what you think you know, no matter how much you convince yourself that “you’ve got this,” cancer is humbling.
Slowly Life Returns
As I slowly came back to life, Karen returned, and we were cocooned like we were kids again, telling stories in a fort we’d built. Although this was far from the playfulness of a makeshift fort, we had good laughs as we did the only thing possible to pass the time: talk. And hide from everything and everyone else. The hum of the machines droned on in the background. I continued sucking on ice chips, a respite to my dry mouth and fear of the inevitable mouth sores.
Reproduced from Fatal to Fearless: 12 Steps to Beating Cancer in a Broken Medical System by Kathy Giusti. © 2024 Kathy Giusti. Published by Harper Wave, an imprint of HarperCollins Publishers. Reprinted by permission.
