When my partner Debbie was diagnosed with angiosarcoma of the breast in May 2005, it hit us both like a ton of bricks. We were in the midst of a move from Washington, D.C. to Tampa and had no idea how we were going to cope with her cancer diagnosis and treatment while simultaneously starting new jobs in a new town with no family to speak of in the vicinity.
For Debbie, who was 35 at the time, the diagnosis seemed especially cruel. She’d battled and survived Hodgkin’s lymphoma 10 years earlier, referring to that period of her life as a “bump in the road.” But now, cancer had thrown a new roadblock in front of Debbie, and she was less sure about how to navigate it.
I decided then and there I would do anything and everything within my power to help her beat cancer. I would be her rock, her cheerleader and her advocate. I would be at her bedside as much as possible and be the best caregiver.
My plan worked, but only for a little while. As good as my intentions were, I soon learned the expectations I had set for myself were unrealistic.
I remember one trying period in particular, when Debbie was in the hospital fighting an infection. I was shuttling back-and-forth between my job in St. Petersburg and Moffitt, getting very little sleep, and forgetting at times to even eat. When I was with Debbie, I stressed about not being at work. But when I was at work, I was distracted and worried and had trouble concentrating on my job. Our dog was getting no attention whatsoever, and I felt guilty about that too.
Overwhelmed, I eventually broke down in front of a co-worker and through my sobs, told him I wasn’t sure how to handle it all.
After letting me cry for a minute or so, my co-worker asked me a question: “If you were on an airplane and there was an emergency and the oxygen masks deployed, what would you do? Would you put your mask on first? Or help someone next to you?”
“I’d put mine on first,” I said.
“Well what you are going through now is an emergency, but you’re not wearing your oxygen mask,” my colleague said. “You need to take better care of yourself first.”
The advice was so simple and yet so spot-on. After all, how could I expect to help Debbie when I wasn’t taking care of myself?
That night, I visited Debbie to make sure she was OK, but I didn’t stay late. I went home and walked the dog, made myself some dinner and watched some TV. Instead of feeling guilty that I wasn’t sleeping in a chair in her hospital room, I savored eight hours of uninterrupted sleep, knowing that the excellent nursing staff at Moffitt would take care of her needs. The next day, I felt like a new person.
Though it wasn’t always easy, from that point forward, I paid more attention to my own self-care. I reached out to neighbors and welcomed their casseroles, their offers to drive Debbie to a follow-up appointment, and their invitations to come by and just have a glass of wine. In addition to learning how to accept help from others, I also made sure I was getting adequate rest and nutrition. I never again let my health or well-being take a backseat to my role as a caregiver.
While Debbie’s cancer journey continued for several years thereafter, finding that balance made it an easier path to navigate.
For more information on self-care or support for your role as a caregiver, please call the Social Work Office at (813)745-8407.
Content for this story is from PARTNERS fall 2014; a newsletter of the Patient and Family Advisory Program. For more information about the Patient and Family Advisory Program, please email Kim.Buettner@Moffit.org or call 813-745-1390.