In 2006, Jai Pausch's husband Randy, a professor of computer science and human-computer interaction and design at Carnegie Mellon, was stricken with pancreatic cancer at the age of 46.
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Given only a few months to live, his life was prolonged for two years by heroic measures, including a dangerous operation followed by an experimental program involving radiation and three different chemotherapy drugs.
Randy is notably known for giving the speech at Carnegie Mellon titled “The Last Lecture,” which also went on to become a New York Times bestseller he co-wrote with Jeffrey Zaslow (who also sadly died in a car accident in February while on tour promoting his book The Magic Room).
As Randy’s illness took hold, the role of primary caregiver fell on Jai Pausch’s shoulders, along with the care of their three young children. In her new memoir, Dream New Dreams: Reimagining My Life After Loss, Pausch shares her experiences as a way to help other caregivers. As she writes in the preface, she hopes that her story will help draw attention to the much overlooked need for the medical community and society to provide support for those left to care for the sick and their families during times of great duress.
In his bestseller The Last Lecture, Randy wrote that he asked you what lessons you had learned since his diagnosis and comments, “Turns out, she could write a book titled Forget the Last Lecture: Here is the Real Story.” Is your book a belated answer to this question?
I don't think my experience as a caregiver was necessarily unique, but my experience was valid. In our society, caregivers are expected to be stoical and shoulder the burden without support, but I think this is unrealistic.
You describe the period when Randy was receiving chemotherapy at the University of Texas MD Anderson Cancer Center in Houston on an outpatient basis. It was a trial program, and the regimen was very harsh. You had to leave your children behind in the care of others, traveling back to Pittsburgh on the weekends to be with them. Could he have managed on his own?
I don't see how. He was getting three types of chemo and radiation for five days at a stretch. He could barely eat, and he became weaker and weaker over the seven weeks of the treatment. The few blocks walk to the hospital would take him an hour with my help.
I have no complaints with Blue Cross and Blue Shield. We were very fortunate to have the coverage. The cost of just one chemo infusion was $2,000. Fortunately, we did not have to pay it, but many people are not so lucky. Even so, our stay in a hotel near the hospital for the weeks of his treatment was a big expense for us. For people without good insurance the cost would have been prohibitive, which is why I think we need universal health coverage.
Throughout his illness, I was the one picking up the pieces, his fevers, kidney failure and so on. Randy was determined to fight to survive despite the harshness of the chemo. Our discussions were about whether he should take more despite his body's increasing inability to tolerate the treatment or stop. With the ability of medicine to prolong life this is a question people do have to talk about. I am thankful that Randy got the chance to fight against the odds, but it was a tough decision for him and for me.
And when you came back home to Pittsburgh from Houston?
I was becoming more and more exhausted, and we were both under great stress, psychologically and physically.
We were lucky to find a counselor who could help us deal with the stress. Both of us were resentful of each other at different times. I was very upset when he suggested that I offer our young daughter, Chloe, for adoption should he die. Without the counselor I am not sure even if Randy survived that our marriage would have.
It is too much to expect that people in my position at that time should be left by the medical community to struggle on their own. It was natural for both of us to feel resentment and guilt in such a situation. Both the patient and the caregiver need psychological help and support. Our counselor helped us maintain our ability to communicate and discuss things together. With the counselor's help we were able to continue that dialogue to the end.
You showed such strength throughout the terrible ordeal and also in picking up the pieces of your life and moving on.
Writing the book has been cathartic for me. I started the project in 2010, and it helped me move on with my life. I was a caregiver for 23 months, but now I am determined to forge ahead and enjoy life. I didn't want our tragedy to define the rest of my life. I didn't want to be like the high school quarterback who makes a winning touchdown and 20 years later that's what everyone remembers.
You had a storybook romance with Randy, and now you've remarried?
Yes, I met my husband Rich a year and a half ago, and we are very happy as a family. I love him very much. We share different things than Randy and I did, such as cooking together and a love of history, and he is wonderful with the children.
Is Randy's family still a part of your lives?
Absolutely. They have visited us, and they accept Rich.