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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