“I want everyone else to take care of Lucy so that Lucy can take care of me”

When Breath Becomes Air - coverWe are honored to be featuring an interview with Lucy Kalanithi, wife of Paul Kalanithi.

Dr. Paul Kalanithi, M.D. was a neurosurgeon and a writer who died of lung cancer at the young age of 37. Paul’s book, “When Breath Becomes Air” explores his life as a surgeon turned patient.

We spoke with Lucy to obtain insights and perspectives on what it is like to be a caregiver. Our discussion with her reflects the life of a caregiver, how important support is, and how she was able to maintain balance in her own personal life.

Lucy focuses on the importance of much needed support and how Esperity can help caregivers, patients, and survivors through their struggles. As a strong caregiver advocate, she hopes that sharing her experiences will benefit others in similar situations. To support Lucy, please share this article with your loved ones.

Q. Let’s start with an introduction. Please tell us a little bit about yourself and your husband. How did you guys meet?

A. Paul and I met in 2003, when we were first year medical students at Yale. I had a crush on Paul, and found him very kind, thoughtful, and funny. We started dating pretty soon after we met and were married by the fourth year of our medical school program. We then moved to California, for our residencies. I pursued internal medicine and Paul pursued neurosurgery.

Q. Let’s talk about your husband’s diagnosis. When did it happen?

A. Paul was diagnosed with stage IV metastatic lung cancer in May 2013. At that time, he was a sixth year resident and was one year away from finishing his residency and becoming a full fledged neurosurgeon. He started experiencing unintentional weight loss, back pain, and cough.

We later found out that he had lung cancer which had spread to his liver and bones; the cancer was already metastatic, which meant that it couldn’t be cured. His lung cancer was caused by a spontaneous mutation. He had an EGFR mutation.

Q. Do you believe that certain lifestyle activities might have put him at higher risk for lung cancer?

A. No. Paul had a sporadic EGFR mutation, for which the cause was unknown. Other risk factors for lung cancer include radon gas exposure or tobacco; he didn’t have those exposures.

That being said, I’d like to add that no matter what, no one deserves cancer.

Q. What types of treatments did he undergo?

A. Paul went through several stages of treatment. He basically stayed on each treatment until it stopped working. His first treatment was erlotinib (Tarceva), which is a relatively new medication that targets his specific mutation, EGFR. It was relatively easy to take.

Then he tried traditional chemotherapy. However, he developed a lot of side effects and complications with chemotherapy, and was in the hospital twice. He was even in the ICU for two weeks. His third line of treatment didn’t work too well. We then tried to enter a clinical trial, but before we could start, he had a complication and died shortly afterwards.

Q. How did his treatment affect you (before, during and after)?

A. I felt that I needed support and help coping. I wanted Paul to get the best healthcare possible and took on the role of managing his medications, scheduling appointments, and a variety of other things. I wanted him to spend time doing things which were meaningful to him.

Paul had also made the decision to go back to work until 11 months into his diagnosis. I was also 38 weeks pregnant when he was in the ICU which was a pretty intense period.

Kalanithi.interior ATA photo - Suszi Lurie McFaddenQ. Tell us about his book “When breath becomes air”. What is it about? What was the messaging behind it?

A. Paul was a neurosurgeon and a writer. Before he became a doctor, he had studied literature and philosophy. The book is about Paul’s experiences being a physician and then a patient.

It is a reflection on life and illness from both perspectives. It is about what makes your life meaningful, how to build a meaningful life, and how to cope despite a terminal illness. In short, the book is about how Paul found meaning in his own life.

That is Paul’s contribution — an additional voice in a larger conversation about dying and about living. Friends and strangers with serious illnesses have told me that “When Breath Becomes Air” put into words some of their own feelings and experiences — including learning to cope with uncertainty and suffering, and finding hope and meaning in the face of death. I wrote an epilogue that includes the experience of bereavement. It’s been a wonderful way for Paul and me to connect with other people and their families.

Q. How did his diagnosis affect your day-to-day life/ your lifestyle as a whole (personally and as a family)?

A. Burnout and stress are very real concerns for caregivers, and I had to understand my own abilities and the need for rest. I had to tell myself that you need to put on your own oxygen mask before you put it on for another. I had to take care of myself as well. It was back to the basics – I was really trying to get enough sleep, exercise, and eating regularly. It was even as simple as not sleeping over at the hospital every night, and allowing myself to rely on friends and family for help at night. I definitely felt the stress, the uncertainty that is accompanied with an illness and discomfort. Mindfulness meditation helped me cope. Paul was also very supportive. I remember him saying, “I want everyone else to take care of Lucy so that Lucy can take care of me.”

Q. What was it like being a caregiver? What type of responsibilities did you have?

A. I started working part time and undertook all household activities. I did all the cooking, changed all of our daughter’s diapers, as Paul became more and more frail. I took on anything that required energy such as going to the pharmacy, cooking dinner.  In short, I took on a lot of day to day responsibilities.

Paul and I spent a great deal of time together, having fun and supporting each other, especially so he could be focused on his chemotherapy, physical therapy, writing, work, and spending time with friends and family.

Q. What type of support did you have while going through all of this? How did you deal with the stress of it all?

A. We were lucky enough to have the support from friends, and family. Through their support we were able to take care of the housework, babysitting, and even meal planning.

We both also went on leave, I started working part-time, and then later took maternity leave. Later on, we took disability leave. All of these, really helped us cope and focus on the important things during his illness.

Q. Could you share with us the most important things you learned from being a caregiver?

A. I learned a multitude of things.

  1. DON’T be afraid to ask for help.
  2. Give yourself a BREAK.
  3. BE HONEST with the person you are taking care of about how you are doing. Taking care of someone can make you feel disconnected and alone. You shouldn’t be afraid to be yourself.
  4. Cancer or chronic illness can be very stressful financially. DON’T BE AFRAID to speak with a social worker to ask about patient assistance programs, financial support, estate planning and other concerns.
  5. Cancer or chronic illness can be very stressful financially. Don’t be afraid to speak with a social worker to ask about patient assistance programs, financial support, estate planning and other concerns
  6. SUPPORT is very IMPORTANT and I couldn’t have done it without the support and compassion of others.
  7. Sometimes even ASKING for help organizing the HELP IS OKAY. You may not even know what kind of help you could use, but a friend can help brainstorm and organize help for you (for example, your friend being in charge of organizing meals, rides, fun events, financial support, etc.).
  8. GIVE each other the BENEFIT OF THE DOUBT. It is okay to let things go sometimes. Everyone is under stress; try to give each other the benefit of the doubt.

Q. For those people who do not have an extensive background in medicine, what type of resources do they have access to (support, information, guidance…)? Do you feel the healthcare system is sufficiently equipped to provide these resources?

A. I’ll give a plug for palliative care — they can be very helpful for anyone managing a serious illness, whether or not it is a terminal illness.” These teams focus on taking care of both patients and family. They also help a lot with symptoms (such as pain or anxiety), quality of life, and difficult medical decisions. For any patients or families who are feeling overwhelmed, I suggest asking to see a palliative care specialist. I was fortunate to have doctors and social workers check on us to see how we were doing.

Peer-to-peer support groups are also very important. There are also various support groups available online (for example, the Bonnie J Addario Foundation for lung cancer, or social media support groups on Facebook and Twitter).

Esperity is also an example where patients, caregivers, and survivors can access information and connect with others for shared experiences.

Paul had lung cancer, so we explored handbooks for patients who were newly diagnosed with lung cancer. These handbooks guided us on the disease and how to proceed, and the treatments varied by the type of lung cancer.

There also needs to be a conversation around “caregiving” policy nationally, in both politics and in the healthcare system. We are a nation of caregivers! I am big advocate for caregivers to have adequate workplace leave, logistical support and financial support.

Q. What advice do you have for other caregivers going through a similar situation?

A. As a caregiver, you are going through a hard time in your own life. I would encourage people to talk HONESTLY about how they are doing and feeling with the other person. Caregivers shouldn’t feel that they are being selfish. You should be your full self, emotionally, and physically and you can’t do that if you can not express yourself fully. It also helps with your mental state and helps the caregiver not feel resentful and disconnected.

I would also encourage caregivers to talk to the doctor about your needs. If you are having a problem with something, tell them what your needs are! Whether it is that the loved one is having trouble taking medications, is worried about a symptom, or the medication is too expensive. They don’t know your needs until you say it. It is also okay to bring up costs and ask for affordable alternatives. It is your right to get the best care and to ensure that your family’s needs are met.

I would also encourage families to do an advance directive. Doctors don’t always bring it up, but it is useful and can help avoid further confusion.

Q. Is there anything else you would like to share with cancer caregivers?

A. Being a caregiver is a tough job and NOBODY can do it perfectly. I want to give a big hug to caregivers and say that we are all in this together.

Interview done by Pooja Rajani

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