HxD Patient Story - Part One

I've been thinking about my presentation for the Healthcare Experience Design conference. The audience could be filled with physicians, researchers, designers, project managers, business professionals, and other patients. It's a wide audience interested in a slightly narrowed topic of designing for healthcare. I get a bit overwhelmed at the thought of providing a valuable experience to anyone who may choose to attend my presentation.

The abstract is done, but I really need to start listing out what I want to express to the audience, draft an outline, flesh it out, make the presentation, and get some feedback before it's finalized. Truthfully, I've had presenter's block, so to get my brain into gear, I'm going to write a few blog posts about myself. Hopefully that will trigger some interesting points for discussion at HxD.

The Beginning
My patient story begins at nine months old. I say this knowing most everyone is a patient from birth, in the sense that babies are born and have pediatricians and appointments and vaccinations, well-child visits, and catch colds. We're all patients at some point. For the purposes of this conference, I'm referring to be a patient as being treated for a serious illness.

When I was nine months old, my mother noticed something unusual in my abdomen. She felt a lump or a bump and being concerned, had me seen by a doctor, presumably my pediatrician, Dr. Medlinsky, who referred us to Children's or Dana Farber, or both. My memory of being nine months old is foggy. I was diagnosed with a liver tumor, hepatoblastoma, and scheduled for surgery and chemotherapy. Since I have no memory of anything before three years of age, I've asked my parents occasionally about the details of my medical situation, but it was 36 years ago, and over time, the memories have faded (for my parents' sake, I'm glad).

Highlights of Childhood Cancer
1. My mom's job was taking care of me because I was really sick from chemo. She had to deal with vomit, fevers, grumpy, crying, miserable me. Babies are usually a lot of work when healthy. They're a hundred times more challenging when they are incredibly ill. It's emotionally and physically exhausting.

2. Money was tight. We lived in a tiny apartment in Lynn, Mass. My parents had very modest, inexpensive cars, but cancer is expensive. If we didn't have the support of the Jimmy Fund, I'm not sure my parents could have gotten through this without bankruptcy. If ever you're looking for a great non-profit to support, please check them out.

3. Most babies are starting to get more hair right around the time I was going through chemo. I went bald. I noticed in pictures I also never smiled during those times, so I'm assuming it wasn't pleasant for me.

4. My dad mentioned my chemo had to be stopped earlier than planned because I didn't tolerate treatment well. Not surprising since the doses of adriamycin I received were not insignificant. This is interesting because the same thing happened during my more recent cancer treatment. I didn't know about the adriamycin issue until I mentioned stopping chemo halfway through treatment in 2010.

5. Chemo's effect on the body can be lifelong. Most of the first 20-25 years of my life, I was constantly sick. I missed a lot of school. I've also been diagnosed as having a some heart weakness related to chemo treatment. Though not life threatening, when having babies and such, I have to be monitored carefully.

6. I remember going for checkups at Dana Farber as a young child and during the Christmas season, there was a decorated tree and each child could take home a present. This memory sticks with me and the experience of seeing the tree and getting a gift brought some normalcy to what was otherwise a routine medical exam. Amazing how the little things matter.

Becoming Me
So much of my life experiences have led me to the profession I have now, and more specifically, to work in the the healthcare industry. For example, thinking about my mother taking care of me has inspired me to always think about the caregiver when working on patient experiences. I think I'll take some time to think about the ways my childhood illness spawned a career in experience design. Perhaps this little exercise was a good idea!