Yesterday marked our third week in Indiana. It has flown by and the change in John’s appearance is so much more evident since our arrival. Through these three weeks it has become harder and harder to build his appetite and to keep things from seemingly “going wrong.” John said those two words yesterday after an incredibly hard weekend. “Why is everything going wrong on top of what we are dealing with?” he sobbed. I wish I had some sort of answer for him and it hurts to know he is feeling this with this avalanche of disparity wanting to devour him in these final moments.
The weekend was not what we expected. We were hoping for a relaxing, problem free few days and instead, his side started giving him issues. We noticed the slow ooze coming out of an old incision on Friday night in the form of a dark, yellow pus. Sorry…a little graphic…I know. Later that night, John shakes me awake and turns on the lamp next to our bed. He had bled through the bandage we put on hours before…through his shirt…through the sheets to the down comforter underneath. He looked shocked…and so was I. There was blood everywhere. I kept asking him if he was in any pain and he kept assuring me he was not, but the area to the touch was a completely different story…it was painful. We quickly took the bandages off to see what was happening to the incision site that originally started as a pin hole. It had expanded further through the slit that was originally scabbed over and was now like a leaky faucet. It did not stop flowing no matter how many gauze pads I stacked and taped on top of it. Every hour on the hour, he would bleed through and we would be awake to strip another set of sheets and try to somehow slow down the continuous flow. It was such a long, agonizing night…finally morning came and we called Robyn, our hospice nurse, to come quickly to the house. She taught me how to bandage it tightly and brought different supplies (thicker, more durable pads) to keep it from leaking every hour. I asked her where the fluid was from and she said it could be any number of things, but we have to continue to let the “bad stuff” come out. It is completely understandable…there would be no reason to stitch him up because his body just wants to push it out… stitching it could cause it to want to come from somewhere else, in turn, causing him more pain.
With all this…John still wanted to make the effort to get out of the house. Getting out of the house is his favorite thing in the world. He pushes himself to get on his feet, get dressed, and move. He wants to move. I cry every time he tells me he wants to do things on his own because I know he does not want to lose that part of himself. This is becoming less and less….and I cannot tell you how difficult it is to realize. One giant step John took this weekend was going out to dinner with friends. He wanted so badly to have a night with friends to eat, laugh, and again, get out of the house. He was there…but I know he was not completely comfortable. The ringing in his ears was louder than ever, the weight loss has caused sitting for any amount of time to be excruciating, and he is slowly losing his voice which made the conversations in the loud restaurant harder than normal. Here we are...with his sister Megan and her husband Chad.
Sunday came and both of us were completely exhausted and we had to keep a close eye on his dressing. On top of this, we continued to drain…and on top of that, John’s feet were swollen and needed to be elevated. Monday at the doctor proved that his counts were at 8.8 and the doctor ordered a transfusion for later that afternoon. We were there over 6 hours and were craving to leave the hospital quickly…it just felt longer than expected.
Can he have a break now? I am pretty sure he has enough to deal with and has enough on his plate than having to now deal with this. He realizes all these things are happening because his mind is still very much here….and he cannot seem to control the downward spiral his body is taking him on. He loathes what is happening…as do I. His sweet spirit is taking a beating yet he continues to press on. If anything, he is not going to stop fighting until the very last second…and with that, we all continue to rally around him to do the same.