The Poster Survivor of Childhood Cancer and Heart Transplant

I had the great pleasure of meeting Terri Dome after her first photoshoot as the 2011 poster patient of the Texas Heart Institute.

In telling her story, Terri hit on several topics that I thought were particularly insightful – but first a little background on Terri.

Terri was diagnosed with non-Hodgkin lymphoma at age 13. After receiving treatment of chemotherapy as well as large doses of radiation over the course of a year and a half, her cancer was in remission. When she began fainting at age 28, she discovered that the radiation that treated her cancer had damaged her heart and lungs. After years of pacemakers, she began to become short of breath and have swelling problems. The pacemakers weren’t working anymore. Terri underwent a surgical procedure known as a “pericardiectomy” in which the some of the pericardium (the outer tissues that surround the heart) is removed. The operation was not successful at improving her breathing. A heart transplant was the next, and last, thing to try. After more than a year of waiting and multiple “dry runs” in which Terri had to be ready and prepped in case a heart became available, she successfully received a donor heart.

Terri’s own experiences have given her insight on life and health that anyone can benefit from.

“More than cancer.”

Even though cancer, and it’s treatment after-effects, has largely shaped Terri’s life, she refuses to identify with cancer. She finds the roles of wife, daughter, sister, friend, aunt and even pet owner (Lucy – a cocker spaniel) much more meaningful and significant. Most important, she remains “madly in love” with her husband.

“How much is it going to hurt?”

Having been diagnosed at such a young age, Terri said that even now, her first thought is “how much is it going to hurt?” She tries not to worry about what the procedure that she faces might mean, but rather focuses just on getting through it.  She feels that her experience as a young cancer patient has made her more compassionate and sensitive, Terri feels a certain “connection” with people who have suffered. Terri said she feels a special bond with those who have suffered, a kind of knowing, an understanding.

“You kind of have to survive.”

When talking about surviving Terri said, “You kind of have to. You go to the test. You go to the procedure. What else are you going to do? People love me, depend on me. I have a responsibility to them. Sometimes I don’t want to go, but I just can’t be that selfish. Cancer is just stress, stress you never see coming. There is no right or wrong way to deal with it.”

“Cancer, for me, is isolating.”

“As a girl, having cancer and being sick was isolating. As an adult, the ramifications of fighting off that cancer are also isolating. Cancer, sometimes, almost feels like a third person. I don’t know how I will feel on any given day. Things are more serious now. My cancer is in the past, but it is omnipresent. I like conversations when I talk about other things. Normalcy.”

“Ask questions.”

“I always get a lot of credit for surviving, but it’s not me. I’m human. I lose hope. I don’t cope with this wonderful attitude. But I’ve always had wonderful doctors and the best care. I’ve always asked questions. A good doctor won’t get irritated with questions, even inane ones. That is why I’ve survived. The odds were against me. I’m not a hero, I was just a little girl who got very, very sick several times. I’m not different or brave or strong. I just got the very best care.”

“I’d rather be the patient.”

“I’d rather be the patient than having to watch someone that I love have to be sick. Being the patient is infinitely easier than being the support team. The patient doesn’t have to think . . . the support team has to think, deal with mood swings, plan.” She spoke of how her husband and her friends helped her, how she could call them and just cry for hours.

“Too much fight to then get well and do nothing

Right now, Terri is still trying to figure out what comes next, but she doesn’t have the answer (yet). She talked about how she got a bit depressed after all the procedures, “There was not as much to do, the days weren’t filled…” However, she is determined to figure out the next thing for her. “I don’t want to get to the well side and just sit on the bleachers.”

Of course, Terri is not sitting on the bleachers. As the Texas Heart Institute’s poster patient, she is sharing her story of hope with others. While she may be looking forward to figure out what is next for her, her past successes will certainly help others get through difficult chapters in their own lives.

Category: Survivors in the News

Tags: chemotherapy, heart transplant, non-Hodgkin lymphoma, pericardiectomy, Terri Dome, Texas Heart Institute