September 9, 2013
Cancer is a scary disease, a career, or an opponent in battle depending on who you are and how you look at it.
It's not a topic I know a lot about; soon that will change. Myles and I are beginning a new journey in our lives: 'Taking care of Papa.' My husband Keanen's father was diagnosed months ago with stage four Mantle Cell Lymphoma. He underwent the first bulk of chemotherapy in Reno, Nevada, where he lives.
Papa moved in with us in our two-bedroom condo on the outskirts of Seattle a little over a month ago. He will be going through a stem cell transplant in the months to come and we are his caretakers for this journey.
What does that entail you ask? We began not doing much; he drove here himself, he can walk on his own and cook, he's very independent and not in a grouchy crotchety old man way. He is kind and gentle and I had only MET him three times before now for a few days at a time.
I do not KNOW the man really by any means. Now he lives with us, and we spend hours in hospitals, waiting rooms and cars daily. We spend every meal together. Myles and I will know him very well before this is all over.
He got out of the hospital almost three weeks ago from round one of his inpatient R-ICE chemo; he went into the University of Washington for three days and then came home. He didn't even get a day off to relax, sleep or recover before going back to the Seattle Cancer Care Alliance the next day. Since then we have driven him to every appointment; with the meds he is on and with the traffic and the drive being an hour each way he shouldn't do it on his own.
We are much more chatty than it would be had he been someone in my family, since we know little about each other. Conversations are random and usually not about anyone each other has met.
He was born in Brooklyn, as were my parents; he was born the same year they were and he went to Woodstock. So did my father.
Words like 'Hickman Line' and 'Port' soon invaded my daily vocabulary. Myles and I quickly learn nurses' names and Myles flirts daily with a great deal of them. We run into the same patients almost daily in elevators, and waiting rooms on various floors. We meet children in the play room. Most of them have a sick parent or sibiling and we rarely see the same kids twice.
Most people we meet do not live here in Seattle; they are here for cancer treatment and then go home months to a year later. There is a floor JUST for Stem Cell Transplants.
The Seattle Cancer Care Alliance is our new school and work; we go almost daily for hours at a time. Some days are long, while others fly by. We have learned where the free chocolate milk and ice cream are kept. We frequent the play room for hours at a time.
We make Papa soup while he's hooked up to fluids laying in a bed in one of the infusion rooms. We bring him ginger ale and crackers or cookies. We know half of the staff by name and more than half we recognize. My husband and I took classes on food prep after the transplant; we took a caregiver class on things to look for, when to call 911, when do drive Papa to the hospital and who to call if we have any questions. Papa, Myles and I met with his assigned social worker who works onsite and helps patients with any and everything they need. We took a class on how to flush and hook Papa up to his fluids and IV's so he doesn't have to go into the clinic for fluids.
Do I have ulterior motives in being here, no. I will not deny that I keep looking for flyers on HIV stem cell transplants, or a group where I can sign up, to get me on a list to have one done. I do get to see firsthand what I would, or any of us would have to go through minus the chemo. I have checked their webpage for the study groups; we are not one of them yet, but there is always tomorrow.
It is a slow process with kinks and long hours, blood draws daily but in the long run we are all chasing the same thing. Freedom from the thought of death for a while. No one is ready to hang their coat up and lay down and die. Not cancer patients, nor us HIV patients. We have friends and family who love and care about us. We have kids to watch grow and take care of; we are searching for a cure. Next chapter: RICE Chemo round two and his stem cell harvest which will be done in the next few days.
Read Brooke's blog, Voice of ONE.