Everything I learned about being a patient...

Everything I learned about being a patient, I learned from my husband. My husband was born with cystic fibrosis and struggled with it his entire life. I knew about it from the beginning of our relationship and it became one of the biggest parts of our life together--taking up so much of our time and energy. In a lot of ways my primary role was as witness. Witness to the pain and suffering that my husband endured and witness to his beautiful, wonderful life despite of CF. I was the one person who saw it all, walking beside him, holding his hand. For some reason now, the fact that I was there to witness feels like one of the more important roles of my life. I got to see all of the parts, where he only showed other people certain parts.

As the witness, I always saw him in his role of patient many times. He was a different man when he was in a hospital gown. At times the different behaviors drove me crazy, but I could also understand the reasoning for some of them. And now, as I am forced to wear a patient gown, I see myself modeling my behavior after Gessner. It was so exact the other day that I felt like Gess was speaking through me. It was during my first chemotherapy treatment.

I arrived to the Cancer Institute about half-hour early, picked up my lab slip and went to the lab. It was my first treatment and somehow I already knew the routine. Check it at the front desk, get lab slip, take slip to lab, get blood drawn, take slip back to the front desk. It went seemlessly; the nurse accessed my port, drew my labs, and put a dressing on the port so I could keep it until I did my treatment. I took my slip back to the front desk and sat in the lobby to wait. And wait. And wait. Gess taught me to always have something with me to do while waiting...so I had my iPod, iPad, knitting, and a kindle full of books. I also had a friend with me and the hospital had jigsaw puzzles on a table. So, we were sufficiently entertained during the wait.

Finally we went back to a treatment room, for some more waiting. Again, something that Gess went through all of the time. There was some delay in getting my assignment for a clinic trial, so we literally sat there waiting for the researchers to randomize me. I handled the waiting with poise and grace, not by getting grumpy at the nurses or pacing around the room.

The results were finally brought to my room and I signed the consent forms and the nurse took me up to the infusion floor. More waiting, but I tried to stay calm by listing to my "relaxing" playlist. Gess often slept at these times if possible.

When I went back to an infusion room, the nurse told me that they need to get another blood draw and that it needed to come from my arm, instead of my port. This happened a lot with Gess and I know that it was frustrating for him. But, Gess never allowed himself to take that frustration out on the nurse or the phlebotomist. And just as he would have, I found myself smiling at him as he walked in, asking how his day ways, and making other small talk. I apologized for him having to come all the way upstairs just to get my blood and as he left, Gess's words came out of my mouth, "Well, thank you sir. Have a good one." Those were his words, but they felt completely natural coming out of my mouth.

Gessner's demeanor and attitude with the doctors and nurses impressed everyone he encountered. I received countless notes and cards from nurses and MAs who had cared for Gessner during his many stays and they all commented on how friendly and positive he was even when he was feeling so sick. I want to be like Gess in this way and want the people who I encounter during the journey to have a positive association with me. Of course, there were plenty of times during my reign as wife that I had to be stern or demanding of medical professionals--and those times were necessary. But for the most part, I want to be a caring and compassionate person to those around me, even when I am not at my best.