Anyone who has taken care of someone, whether it’s a small child with the flu or an adult recovering from a complicated surgery, knows this truth: It can be a very tough road for the person doing the caregiving, as well as for the one who is sick.
But there’s a special kind of caregiving challenge that comes when a person’s illness is serious, incurable and intensely unrelenting.
Cara and Craig were in their 29th year of marriage, with two grown sons, when 54-year-old Craig was diagnosed with multiple myeloma, an incurable cancer of the plasma cells that affects the immune system. It’s a disease that can require a high level of caretaking, particularly as patients undergo treatments.
For the past 30 years Johnson & Johnson has been working toward its goal to eliminate cancer through advances in treatments and to give hope to patients and their families.
For National Caregiver’s Day, we’re sharing Cara’s story of her own journey of hardship and joy, and the lessons she has learned over the years.
Cara: “Craig and I met when I was 17, when we were both moving into our college dorms. From day one I was so impressed with his sense of humor and his love of life. We started dating, and got married right after college. We’ve now been married for 37 years, and we live outside of San Francisco.
Eight years ago Craig was diagnosed with multiple myeloma. Unfortunately, I already knew way too much about the disease because my father also has it. My father’s diagnosis was smoldering myeloma, which, for some patients, can be managed with mild chemotherapy pills, and he never had to be hospitalized.
It was different with Craig.
A shocking diagnosis—and a sense of disbelief
Craig hadn’t been feeling well, and was on a business trip in Texas when he received his blood test results. He called me from the Dallas airport and said, ‘I’m flying home.’
The results indicated that his protein levels were super high, which can damage your organs, and his doctor didn’t even want him to get on the plane. But he was desperate to come home, so he took the flight and I picked him up in the pouring rain.
We went to the hospital and they immediately did a bone marrow biopsy and diagnosed him with multiple myeloma. I said, ‘You’ve got to be kidding me. My dad has this.’ After they did all the bloodwork, the doctor said, ‘Well, it’s not exactly the same. Craig has a very rare, aggressive form.’
He was given a year and a half to live. My husband was 54 years old, at the height of his career and of our lives.
A week later on Thanksgiving, which was also my birthday, I was sitting at the table with my dad on one end, and Craig on the other. I looked at these two pillars of my life and thought, How can this happen? What do I do?
Craig kept saying to me, ‘I need you to be my rock—don’t let me down.’ I said, ‘Well, I’m not a rock; I feel things deeply. I process things. But I can be a tree.’
What I meant was that I can be a tree with deep roots and find ways to nourish myself with my family and my friends, and by taking care of my own health. I told him that, and said, ‘And I can be your shade—the wind’s going to rock us, but I am going to be there, standing over you.’
Everyone wanted to be a part of our support network. And at first I didn’t want to let them because we’re private people. But I came to learn that it’s really important to share the load and allow other people to love you and support your family.
The doctor showed us Craig’s potential path and it was always going to be tough, with bone marrow transplants, many other treatments and isolation because of his weakened immune system.
At the beginning, life was a five-alarm fire, and I was forgetting to eat and just frantically trying to keep my family safe.
Learning to accept help and love
Before Craig’s diagnosis, I was the one who always brought the soup to other people. I know how good it feels to help that way. But it was a really hard thing for me to learn to answer the knock on my door and accept the soup.
Everyone wanted to be a part of our support network. And at first I didn’t want to let them because we’re private people. We don’t post things on social media about this journey; Craig doesn’t want to be Cancer Craig. He wants to be Craig.
But one day our son, who was in college, blew his knee out and needed surgery. The only day he could get the operation, which a parent had to be there for, was the morning my husband had a very important medical appointment. This moment helped me learn that not only do I need help, but that it’s okay to ask for and accept help. So we called a friend, and of course he took Craig to the appointment.
Years ago, when a friend who has four boys became the main caregiver to her children, I showed up with food. And she remembered that. As soon as she found out about Craig, she started bringing giant pots of things that we could eat for a week. She did that for years, and it took the stress off of me so I could nurture my children, my husband and myself.
I have a couple of friends that I meet clandestinely at a fast food restaurant, because we’re all pretty healthy eaters but sometimes we just have to go get a taco. I love getting that “Let’s get tacos” text out of the blue, because I might be having such a tough day. You know how dogs will just hide in the bushes when they don’t feel well? A lot of us do that; we don’t reach out, we hide in the bushes or stay under the covers.
I came to learn that it’s really important to share the load and allow other people to love you and support your family.
“We only have so much of a reserve tank": The power of self-care
If you’re a caregiver, I think it’s good to make a list of things that make you feel better. I tried to create my perfect menu of activities that fill me up and nurture me—for me, it’s reading (it’s so inspiring to read stories of people who have survived things much tougher than this), photography and walking.
It doesn’t matter where I am; I can walk anywhere. When Craig’s in treatment they won’t let me come into the hospital, so I go to the botanical gardens in San Francisco or I walk to a beach, listening to podcasts or music to pass the time.
I think the person you’re taking care of wants you to be joyful and connected to people. So I try to have a life because I don’t want Craig to worry about me worrying about him.
Even if you aren’t that mobile, just open your door and step outside and smell the air and listen to nature. It’s important, because we only have so much of a reserve tank. There’s something so nurturing about connecting to nature.
There are a lot of difficult emotions to process, like guilt. Craig has been through every treatment available, so there were periods when he was in the hospital for weeks at a time. I would pack food and go visit him, then drive an hour and a half home by myself and turn the key to a dark house. And I’d do that over and over and over again. And yet I felt guilty that my husband was having to suffer so much, and I got to leave the hospital.
But I think the person you’re taking care of wants you to be joyful and connected to people. One time Craig said to me, ‘I just feel so guilty that I’m causing all of this stress and grief and disruption to everyone.’ So I try to have a life because I don’t want Craig to worry about me worrying about him.
Keeping hope alive no matter what
When Craig was diagnosed we had just closed on a house, and he and the boys surprised me on that Mother’s Day—they had some plants and a shovel and they said, ‘Plant your garden.’ And I looked at Craig like, Are you crazy?
I thought to myself, He’s dying. Why would I plant a garden? We’re not going to be here and we’re never going to be able to really move into this house. Why would I do that? He knew what was going through my mind, and he said, “Because gardens are hopeful.”
Hope has played such an integral role to me throughout this journey.
Craig was always a beautiful skier. He had horrible boots and he just didn’t want to get new ones—I think he thought, I don’t know if I’m going to get another year. Why would I invest in boots?
Well, recently, he got some new boots. Craig has been doing well on his treatments, and I think his purchase is just so hopeful and wonderful. They had to be custom-made because his legs have changed from his treatments, but our goal is for me to watch him ski. And there’s no way that I could have ever envisioned this time in our lives in 2014.
As a caregiver, I think the most important thing—and it sounds so clichéd—is to always keep hope alive. It’s been eight years since Craig’s diagnosis, and even after a number of different treatments, no one knew if we’d still be sitting here now. But I’m so grateful that we are.
