04 March 2013
Intensive care units, both in Mexico and the US were toughest. I could hardly discern any difference between the endless hours and days and nights. The days crept by like months and my internal clock ceased to determine any difference. Rarely, but occasionally I would get my right arm freed to write a message. I kept asking for less pain medication to reduce my hallucinations. Apparently their concerns were that reducing pain meds would make my already anxious, frightened and choking body crazier than I was. Finally, at some point, my hands were freed with an agreeing nod of my head that promised I would never put them close to my face and or tubing.
Being able to communicate with Iris and nursing staff on paper was a privilege and a freedom that mostly I had felt certain I would never again know. I will never forget how happy and empowered I felt to get that pen and paper and tell Iris that I loved her. Though not very legible, I was usually able to convey my message. Every hour or two around the clock, I was poked, prodded, needled, rolled to a new position or IV changed. And each time my pen and clipboard were moved beyond my reach. Usually the vampires left quickly and forgot to return my things until finally I would not release them until they promised not to forget to give them back. After too many accidently broken promises, I kept that pen and clipboard held to my chest with both arms wrapped around it night and day, no matter who or what was going on.
By now, I had not had food or water for over five days. My body had feasted on forty pounds of my lean muscle groups. The doctors would force me to do a frightening exercise every few hours by starving my lungs for air while cutting back the life support for one hour blocks of time. I hated this and always looked forward to getting back to full Life Support. After a few days of this, the doctors said that I was finally breathing on my own which for some reason, I disbelieved given the amount of labor I was doing. So they decided to pull the tubes out of my throat and lungs. With great difficulty, I was happy to whisper my first words since I went into the operating room in Mexico. I would often still hand signal for my clipboard, forgetting that I could speak a little. However, the nurses would remind me, “Mister Boone, you can talk now remember”?
The privilege of eating first required an exam by a Speech Therapist. A hospital warming tray was delivered to me of the most wonderful tasting food I had ever eaten. I slowly and cautiously ate several exhausting spoonfuls of food under the watchful stare of the therapist with two of her fingers on my throat. She determined that I would need to have all of my meals finely chopped up and so ended my hunger with complete disgust for food. Within a day I went from not being able to look at the tray, to not even being able to tolerate the smell of the hospital food in the same room. Though everyone was stern and insistent that I must eat, I would reply, “later, or the next meal I will do better.” I still can’t even think about ever eating any food under a warming lid without nausea and a gag. I would have starved for certain, had I not developed an interest to foods on TV commercials, and each day iris and family smuggled in my “choice of the day”.
About this time the doctor cut the stitches fastening the heart catheter to my chest and after warning me what he was about to do, yanked the tube out of my heart and chest with one quick stroke. I will save you the disgusting details of what was to follow this procedure. It got me out of ICU however, and into a room with a sixth floor view of the mountains. After a couple days, I moved up to Oncology on the seventh floor with a better outside view. The patients on that floor made it a very depressing place to be though considering that most of that floor looked like they would never be leaving by wheelchair.
We are feeling rather at home in Carlsbad and nights and evenings are the toughest on me now. Breathing becomes more laborious and my cough worsens. Sleep is spotty and usually occupying far fewer hours that before I became sick. I believe it would help if I could get more exercise but that is out of the equation right now. I am plagued with unsettling thoughts of the uncertainty of the future and they all fire upon me nightly after about three and a half hours of sleep. I guess this shouldn’t surprise me when every goal, passion, and plan for the future has changed, practically overnight. As yet, my overall priority remains continuing to breathe and retaining adequate levels of oxygen, especially in the evenings and night. Daytime is still much better than evenings.
I am more than thankful to be in the California sunshine each day. We especially like it here in Carlsbad. Iris takes me for small walks along the sidewalk above the beach every morning and evening. Even though it is March 2, 2013; the ocean is beautiful and often full of surfers. There are four permanently installed beach volleyball nets with teams of players and everyone is in swim suits, slender, smiling, laughing and healthy, enjoying the sun, sand and fresh air. I know I could not survive the cold northwest winter now and pray that things all work out for us to remain in the general area during throughout my treatments. As I understand it, I will do four to six months of the chemotherapy that I am on now. I will then go on a maintenance chemo for a year and be reevaluated. The up side of that conversation is that the doctor has not said “six, months Michael, get your will in order”. I asked about a time line once and the doctor would only commit himself to say “I don’t know, everyone is different”.