Wednesday, September 04, 2013

part two of our journey from sickness into health:

When sickness feels like all we know...

(please read part one first)

Once diagnosed, his GI doctor prescribed medication for the inflammation, and his dietician provided supplements to add to his meals for extra calories. By Spring 2012 he had begun to drop weight. He had always been thin- lanky, some would say. But in the process of only a few weeks he dropped about 25-30 lbs. At his worst I think he came in at near 135 at 6ft tall, and Having about 20 bowel movements a day had become average for him, and there is just little one can do to catch up with that kind of loss. He actually had developed sores on his rear from sitting on the toilet so much with almost no body fat to cushion it.

Emotionally, in many ways I began to feel like a single mother. I was the primary caregiver and only worked part-time myself- Michael at this time was still doing his part-time music director job, but he couldnt work full-time. He was unable to commit to spending time with jennifer during her toddler days because he often had to run to the restroom and might have a mess to clean up afterward, and if that didnt happen, he just didnt have the energy to enjoy her. She couldnt sit in his lap, because his insides were so inflamed that they were painful and tender, so his lap became off limits most of the time He couldnt sit on the floor. If I went to the store, she went with me or stayed with my parents. When it came to our intimacy, that was hard to come by, too. I wouldnt know when or how to simply hug him without hurting him...I usually had to rely on his initiation for...anything. I did my best to prepare healthy meals for the three of us, but never knew if he would be able to stay at the table, or even feel like eating anything. In April Michael had to step down from his music position because he just couldnt know he could be in place each week. We were going to church in separate cars. He had begun having to leave during church services, or was sometimes unable to show up at all. It was difficult to delicately explain his reasons, because usually it meant he had either been up most of the night running to the bathroom and maybe moping the hallway, or that he had had an accident on the way to church...or in the middle of church. I was raising our child, holding our only job (and part-time), keeping up with our groceries and our bills, leading the hymns at our church, and all the while keeping a loving and gracious face toward my husband as I tried my best to be his helper though sometimes i just watched him fade, not understanding how much longer we would have to deal with not seeing healing...or how much longer his body could last at the rate it was going.

He was on pills, infusions, and steroids for inflammation, for diarrhea prevention, for blood loss...I cannot remember the number of times Michael's medications were changed...every month or couple of weeks...either from a bad reaction to one, or simply not seeing any result from another. Side-effects ranged from sleeplessness, immune suppression, thrush, constipation, fatigue, cancer-risk, there was even one he was on which was known to cause birth defects in children, if we had conceived during his taking it, or within 6 months after ending it.(that one, I was thankful to move past-i was so thankful that it didnt work. I remember crying prayers in the shower during that because I wanted so much to have another baby, and for jennifer to have a close sibling, as I had grown up blessed with, and if this drug worked or didnt, it was taking months off of our being able to try to conceive. I remember releasing it to the Lord and realizing that at that very moment he could be forming a baby for us to have later by adoption if he wouldnt have us birth another of our own blood. So right there in the shower I prayed for that possible baby and for the struggles the mother may be facing which might draw her to need adoption down the road.) After trying every medication and sticking with the low-fiber diet for a ridiculous amount of time, He. Never. Saw. Remission. Surgery clearly became our only option. His body wasn't gaining weight back. To me, his body had begun to look like images of people in impoverished countries, or in the Holocaust. He wasn't that far gone...yet, but his ribs and collar bones were more than sightly visible, and his rear had become concave at each hip. His thighs matched my calves, I think. In my mind, surgery would seem like a miracle....bringing him back from a road to an early death which I couldnt bear to think about...and his dad passed away that June....I had watched Linda watch her husband fade out of health and into the arms of God, and she and I gave each other looks that seemed to say how much we understood one another's pain in loving and caring for someone that you cannot possible actually help...we had that in common, though I did not want to follow her entire road just yet....

We met with Dr Lane, the GI surgeon, in September of last year to evaluate Michael's candidacy for surgery and what the outcome could look like. We came loaded with questions, and Dr. Lane seemed to answer each of them before we had to ask them. We knew that he was not only familiar with the subject matter, but also very conservative and cautious in his approach to it. He suggested because of how much strength Michael had lost, that the surgery be completed in three parts. (This is sometimes done in only two) He did not want to rush the decision process or the healing process of the surgeries. In all, Michael would first lose his entire colon and receive an ostomy his first surgery, have a “jpouch” created during a second surgery, and then have his ostomy reversed on the third surgery. While we were certainly apprehensive about surgeries and about the months michael would spend with a bag on his belly and what that would be like, I felt like this man was offering me our lives back, giving us the “in health” portion of our marriage vows which we have so longed to experience.
He put Michael on some extra protein to prepare his body to be better able to heal after surgery, and then told him to try his best to put on some weight. We scheduled his first of a three-part surgery for November 2012.

Next entry: the surgeries and recovery periods, etc

(proceed to part three)

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