PROLOGUE 5/7/14: So I’ll start the story where I am currently. It is almost 5:00am. I sleep when I sleep. I awake and if I am able, I write here, answer e-mails, look at work e-mails, and work on work things. I am blessed to work from the comfort of my home. But how did I get here? Well first off – what is in my field of view as I type? Obviously my lap-top computer is front and center. Sportscenter is on in the background but directly in front of me as I sit in my 22-year old lazy-boy. Then there is this tube. I’ve never measured it – but it is about 6-feet long – extending from the center of my neck, snaked under my lap-top and connected to my ventilator. Wait a minute? Ventilator? Are you in a hospital, you ask? I thought you just said you work on things from “home?” Technology has come a long way. I am on a portable ventilator. It sits on a stand and has a name – “Karen.” She goes where ever I go. To the kitchen. To the bathroom. To my bed room, living room, dining area – you get the picture. I am dependent on Karen to expand my lungs and provide me with life. We are partners – but it wasn’t always that way. There was a time that I wasn’t ventilator dependent. So let’s rewind to September 2012. In September 2012 I was having a “normal day” – well normal for me. Laurie, my wife, would pull out my walking stroller from the back of the car. I’d slowly make the 100 foot walk to the doctor’s office front door. I’d sit down because I was winded. It had been a month since I last my saw my doctor. After I was called into the room for vital signs and precursory weigh in, my doctor entered the room. She took a look at my blood work. She took a look at me. She asked me how I was feeling. Without thinking I said “good.” I always feel “good” for me. I’m an optimist. She said “Well you don’t look so good. What’s going on with your weight? Looking back at your chart you are down 25-30 pounds since February.” You see, while September 2012 was really not the beginning, in February 2012 I had a total meltdown. Laurie had witnessed my decline. We were visiting with my brother and his daughter in a small diner in upstate NY. I ordered stuffed shells. I knew it would be easy to eat as things were getting harder to swallow. I was increasingly uncomfortable sitting in restaurants. As I poked at my food, everyone else was about finished with their meal. I knew I had to eat but I had no hunger. Finally my wife scolded me for not eating lately – asking me if wanted a feeding tube in my stomach? I was nowhere near needing a feeding tube, but my wife has an uncanny way of seeing the end game and knowing that if I kept it up, I was going to dwindle away to nothing. With that said, I broke down crying right there publicly in the restaurant. Everything just came crashing down on me. I had seen my health declining for unexplained, and to that point, undiagnosed reasons. I had a long and complex medical history. But what was going on during this time frame was not right. For me to have no appetite was unheard of. At my maximum weight in 2010, I was pushing 205 pounds – but at five foot four I was beginning to look like the Michelin man. And now, some two years later, I was maybe 150 pounds. I was so confused. I was helpless. I was seeing myself in my quiet moments in the bottom of a pit – looking up, seeing the light, but unable to crawl or scratch my way out. I felt cold and alone. What was happening to me? My self-esteem was shot. I had a really good paying job, but lost it due to my health. I used to fix things around the house but with this increasing shortness of breath I was unable to carry a ladder, close or open our pool, or even mow the lawn. I was a train wreck. After I composed myself we asked for a to-go container and left the restaurant. I was broken. I was depressed. I drove home with my brother in his pick-up truck so we could have some private time. My wife followed us with my niece in our car. I am sure the two conversations, like the cars we were in, were very different. During my monthly doctor visit in March 2012 I finally asked for a prescription for something to increase my appetite. By April, things were seemingly better eating wise, but I was having intermittent episodes of shortness of breath. I really couldn’t go up or down a flight of stairs without taking a few minutes to recover. My resting heartbeat was in the 100-120 range. My heart was compensating for my unexplained shortness of breath. By May of 2012 I was wearing a C-Pap while sleeping/napping, but I had to wear the machine at times around the house - just to feel comfortable with my breathing. In July of 2012 I went to the Mayo Clinic in Rochester, Minnesota. Among the myriad of tests - blood tests, urine tests, etc., - I was scheduled for a lung function test (an objective diagnostic measurement of the capacity of air exchange for a typical guy my age, and my size). I was at about 65% of normal – which explained some things – the shortness of breath, the elevated heart rate. But why was this happening? A further look into my breathing history indicated a gradual decline in my lung functions. Two years prior, in 2010 – when I was at my heaviest – a 205 pound porker - my lung function test had me at about 90% of normal. I chocked it up to being overweight and being out of shape – I was unconditioned. I made a concerted effort to lose weight. I was determined to get to a comfortable 175. I figured I should feel much better then. Well here I was, at the Mayo clinic, at 175 pounds, and I wasn’t feeling any better. The Mayo clinic does what it does and after being scheduled a week of tests I finally met with my team of doctors and nurses. The findings were not surprising but very concerning. The shortness of breath was attributed to my diaphragms being paralyzed. How was that? Not sure they said. Among some of the tests I had I also had a very extensive EMG test. Personally, it seems like a very barbaric procedure – they take small yet sharp probes and poke them into muscles in the neck, back, chest, stomach, arms, legs, hands and feet. Looking at an oscilloscope they poke in 20-30 places on your body to see the conductivity of the muscles. And how do they do that? The doctor has an assistant that cranks up the electricity in order to get the muscle to move or jump – it’s a real joy. Ranks right up there with a root canal, or a bone marrow biopsy – but that’s another chapter. The results of the EMG, coupled with the diagnosis that my diaphragms were paralyzed, they scheduled another interesting test – a muscle biopsy of the upper arm. I thought, with my medical history, this should be a piece of cake. They took me from the waiting area into a small room that looked like so many others at the Mayo clinic. The doctor, nurse and intern arrive and explain how the procedure will proceed. They were going to numb the surface of my upper arm near the tricep – so I wouldn’t feel the incision. That made sense to me. However, the next thing they told me about the procedure did not give me a warm and fuzzy feeling. Since they needed a small muscle biopsy for testing, the muscle couldn’t be numbed with novacaine. They told me they were going to have to do the biopsy in the deeper part of muscle tissue without numbing it. Suddenly this was the best day ever! If I thought being poked and prodded during the EMG was special, I was about to understand the new meaning of special. Without going into the gory detail, I ended up with about a three inch incision and the results were shared with me during my visit with my medical team. They explained that the biopsy revealed a diagnosis of myositis – a muscle condition where the there was an indication of graft-versus-host-disease within the muscle tissue as a result of a previous bone marrow transplant coupled with the results of long term use of prednisone. Essentially, their opinion was that the diagnosis of myositis explained the shortness of breath as my breathing muscles were unable to expand and contract my chest to properly exchange the air in my lungs. That tied in with the objective findings of my lung function test. It was starting to make sense. But what now? My team suggested that I start a treatment regimen of IVIG (intravenous immunoglobulin). Interestingly enough, I had been taking IVIG for several months prior to this because my IGG blood levels were low. But the dose they were recommending was far higher than my “maintenance” dose. As such, it would take several months to get me to the new therapeutic level they wanted me on in order to combat the effects of my newly diagnosed myositis. So this being July 2012 we ratcheted the dose up in July, a little more in August and finally in September 2012 – where this story began, I was to be given the highest therapeutic dose I needed to help with my muscle disease. But do you remember what my doctor said that day in September? I didn’t look so good, she said. I think I’m going to admit you to the hospital, she said. In that moment I thought, yeah, but wait, I walked in under my own power – granted, I was assisted all the way by Laurie, and I was using a walking roller chair. I was in a state of denial but I finally accepted the fact that I needed some help. Without any convincing I said okay. Laurie and I drove to the Upstate University Medical Center in Syracuse, NY - about an hour from home. I was admitted to the hospital on September 9, 2012 and things went downhill quickly from there. By September 18, 2012 I went from an ambulatory person, breathing on my own, to having to have a tracheotomy in order to keep my lungs inflated and working properly. My admitting doctor saved my life. Had I not had the tracheotomy and been put on the ventilator I was told I probably had two, maybe three weeks to live. The time between September 9th and September 18th were a mere blur. My breathing was so degraded that my CO2 blood levels were climbing. I was okay in the moment, seemingly cognizant and alert, but the increased CO2 was causing me to have memory problems. I was asking people the same thing, being told the same thing, but not remembering I had just been told what I was told – and moments later I ask the same thing again. My family must have been concerned where this was going. I really hadn’t a clue. By this time, I was fully dependent on my C-PAP machine to breath for me. I’d only take it off to eat, or brush my teeth, but being unable to comfortably breathe without it, I was loosing weight at an alarming rate. I was spiraling to a place I didn’t want to be. Yet, after being told that the only way I was to survive, I needed a tracheotomy and was to be put in a ventilator – not temporarily, but for the rest of my life. It seemed like a bit of a limited death sentence. My wife and I “what if-ed” some possible scenarios. What if I didn’t do it? What if I did it, and it became incompatible with the life I had imagined? There was obvious talk of death, making me comfortable, resting in peace. It was so sobering. My two sons were in their first weeks of college – Josh, a junior and Stephen, a freshman. And here I was, in the hospital, fighting for my every breath. I was so very tired. I was tired of being tired. I was sick and tired of being, well quite honestly, sick and tired. I was at the end of my rope. I had been told that people know when enough is enough. I was there. And for about an hour, after we discussed all the possibilities and eventualities, I was ready to meet my maker. I was ready to leave the surely bonds of earth. Enough was enough. No tracheotomy. I would be made comfortable and maybe by the end of the month I would be dead. It was pretty heavy stuff. But honestly, God’s Gift of Cancer?
Posted on: Tue, 13 Jan 2015 03:55:31 +0000
Trending Topics
Recently Viewed Topics
© 2015