Time to Care: Unexpected Illness
I didn’t think family-supportive policies were about me, a young professional. I thought those policies only applied to working parents. But then I had a conversation with my mom that broadened my view. My parents, Diane and Bruce, had only been married for a year when my father was diagnosed with a rare, rapidly-progressing form of cancer. With limited vacation time and no access to paid family leave, my mom had no other choice but to work through his treatments.
I’ve heard Dad talk about his cancer story my whole life, but I’ve never heard it from your perspective. I also never thought to ask you what it was like to be his new wife one moment and then suddenly also be his caregiver. Can you tell me your story?
We met in a bar celebrating a mutual friend’s birthday. We were engaged six months later and married nine months after that. Our first year of marriage was a dream. We just did things together and had fun. We liked to go to the movies, and we would hang out with friends. I was working at Iowa State University as a secretary. He was working for the United States Department of Agriculture (USDA) Labs as a lab tech. We were both taking classes at Iowa State University to work towards our bachelor’s degrees.
At what point did you realize Dad was sick?
We had been married for a little over a year. He didn’t feel well, and he said he never got sick. He began throwing up every now and then without warning. He had been going back and forth to the doctor, but the doctor thought it was just nerves; we were buying a house, going to school and working.
Then, the week of Thanksgiving, he couldn’t keep anything down and was hospitalized. He had developed a mass that blocked off his stomach. Two days later, they did a biopsy on the mass. The doctors thought it was a Hodgkin’s tumor, and they started chemotherapy right away. He was in the hospital for about a week before we went back home.The next week we were supposed to return for another chemo treatment. Instead, they said they were wrong. The doctors had done additional testing. They diagnosed him with Acute Myeloid Leukemia. That was a worse diagnosis than the Hodgkin’s tumor. We had to travel to Iowa City immediately for an appointment the next day.
How did you feel? You were so young. How did you handle it?
I went into shock. I was numb. There was so much information to take in: treatments, insurance. Decisions we had to make for a future we couldn’t predict. For example, we found out he would eventually need a bone marrow transplant, but his insurance wouldn’t cover the transplant in Iowa City. We would have to choose to go to either Chicago or Minneapolis.
First, we had to stay in our city, Ames, for several rounds of chemo to get the leukemia into remission. Simultaneously, we were looking for a bone marrow donor. Your dad had to be periodically hospitalized for the chemo treatments. I remember we were there over the New Year.
I’m grateful we were young. When your dad was hospitalized for treatment, I spent nights with him in the hospital. I would go home around 6 am to shower and be at work by 7:30 am. After work, I would go back and then do it all again. He was finally in remission around March.
My parents were right there for me all the time. And for your dad, his parents and sister were there. Your aunt was thankfully a bone marrow match. Throughout all of this, we had the support of such good friends – your dad especially. Bruce and Gayla, Mel and Steve and others had their whole congregations praying for him. And we felt that.
I can’t imagine the schedule you kept was good for your physical or mental health, though. And, at some point, Dad was hospitalized for the bone marrow transplant out-of-state. What changed, and how did that impact your schedule?
It wasn’t ideal. None of it was ideal. We just tried to make it work. We had people around us – friends and family close by to help.
The cancer went into remission in March, so the doctors wanted to do the bone marrow transplant. Earlier in the treatment phases, when we first learned about the transplant and insurance situation, we decided to go to the hospital in Minneapolis. When he left to go up to Minnesota[....]that was the very, very worst part. I couldn’t go with him the whole time. I didn’t have that much leave time from work. We tried to figure out when I would be most needed. His sister, as the bone marrow donor, went with him at first, instead of me. The doctors wanted to keep her safe while they killed off his immune system for the transplant anyways.
When you don’t have the ability to be present for everything, you have to figure out when you’re needed most and hope you’re making the right choice.
He wasn’t at his sickest at that point, and we decided it was most important that I was there for the transplant, so I waited a week before joining him. I was a mess. I didn’t know if he was going to live or die. The odds weren’t good. We didn’t know what life was going to look like afterwards. I had to wait, knowing that he was going through chemo and radiation without me. I had to wait, knowing that when he walked out that door for the hospital. I didn’t know if he was coming back.
After the bone marrow transplant, he had to stay in Minnesota to recover. The hospital gave us a place to stay for 10 dollars a day. It was like a dorm set-up, with a kitchen area and the bathrooms and shower in the hall. It was a way for people from out of the area to go back and forth from the hospital for long periods of time, like patients waiting for a donor match and transplant.
During that time, his parents volunteered to be with him during the week, and I would stay on the weekends. My parents were afraid I was too tired from the stress, so they drove me up every Friday after work and brought me home every Sunday. When we were originally trying to plan this out, it was incredibly stressful. I didn’t have that kind of leave time, and I couldn’t stay with him the whole time. We’d only been married for a short time, and it was hard having someone else care for him when I couldn’t.
How did both of your jobs impact the choices you made during this season of life?
I worked through everything, for the most part, and focused my evenings and weekends on him. When my boss was away, my coworkers would let me sleep if I had fallen asleep during my hour lunch break. They knew what I was going through, and they knew I needed the rest. Even though I had already been working with the company for several years, I was only earning eight hours of vacation time a month. I had built up some vacation, but it didn’t accumulate well. The Family Medical Leave Act had just been enacted at that point, but we were newlyweds and had just bought a house. Taking time off without pay wasn’t an option.
Your dad’s workplace, on the other hand, was really excellent. They were so supportive. He had a lot of sick time he was able to use, which helped a lot. Many of his coworkers donated their leave time for him. They also stepped in to help us with our housework. Our lawn would be mowed, or the snow would be plowed, and we didn’t know who did it. All we knew was it had been somebody from his work. Additionally, his coworkers collected cash to help with gas for the transplant. Like I mentioned, I didn’t have the leave to be with him during the week, so I could only spend the weekends with him. The gas money helped me afford driving back and forth from Minnesota.
Then, when Dad couldn’t go back to being a lab tech because of his compromised immune system, the USDA offered him a job as a computer tech. He had never even plugged in a computer before, but they wanted to keep him and they offered to train him to start over. It was really incredible.
So, Dad was diagnosed in November. He went into remission in March. He had a bone marrow transplant on St. Patrick’s Day. By Easter, his white blood cell counts were showing his body was accepting the transplant. Everything you just described happened in the span of six months.
Yes. I was told early on in his illness that if we made it through cancer, then we would make it through anything. I don’t think that’s true for everyone, but it was true for us. We have a stronger marriage because of it. Early on in his illness, we found out he wasn’t going to be able to have children. It would be a side-effect of the radiation. But after he recovered, your dad and I returned to our dream of having kids. We wanted kids, and we found a way. Now we have you and Kevin.
What makes you feel optimistic about the future?
Well, I feel like you and Kevin are strong people who are finding your way. You in Washington D.C. and Kevin starting college this year. My babies are leaving me.
But, I think we have a tight family, and I have hope that it will stay that way. I still worry about your dad’s health. There have been so many complications from the treatments he went through for the cancer: cataracts, early heart disease and severe arthritis in his joints. I want more time together with him. I hope your dad and I get more time together.
Diane Maxwell is the wife of Bruce and mother of Chelsea and Kevin. She is also a loving daughter, dependable sister and unapologetic bookworm. Diane shared her story for “Time to Care” because unexpected illness can happen in anyone’s family, and work shouldn’t stand in the way of family care.
Chelsea Maxwell is the Program Associate of Families Valued, an initiative of the Center for Public Justice, and the contributing editor of “Time to Care.” To share your story, email firstname.lastname@example.org or reach out at www.familiesvalued.org/connect/share-your-story/.