PCMH - Continued - November 1

The door to John's room was open and we could see the activity in the hall.  The move had begun.  Lots of people, carts, and machines were being systematically moved, one room at the time.  We were next.  And it is not easy.  Heart monitor, oxygen tank, IV pole, and oh yeah....the patient, had to be moved, hopefully with no negative impact.  But that was my job.  I kept checking his tubes to make sure he was still getting oxygen.  One time it was unhooked for a move and reconnection was inadvertently missed.  Didn't take long before John's oxygen levels started dropping.  That's how we learn.  Mistakes are made and we learn to not let that happen again.  So, I was like a mother hen rushing around making sure my baby was just fine.

As the crow flies, it was not a great distance from the oncology ward to the Heart Institute, but going by way of the inner halls, it was quite a hike.  Soon we were in room 603.  And what a difference.  The large windows were allowing the Monday morning sun to stream in.  Lauren and I set about getting our nest made in this room and it was ever so much nicer.  The nurses and care partners were scurrying around, finding their stations and getting things in order.

It was noisy, so I closed the door.  There was so much activity in the halls and we were tired.  Lauren left the room to make a few phone calls and John said, "Come sit on the bed with me."  I sat beside of him and he held my hand.  Out the large windows, we could see the top of the trees with their beautiful fall colors, what a wonderful sunny day.  Off in the distance, the ECU football stadium.

"This is not the way I thought it would go down.  I don't think I will live through the night," John said.  I looked at him, confused.  "What are you talking about?  I know you feel bad, but give the new medications time to work,"  I said.  "You have to allow a little bit of time." Tears were starting to stream down my face.  As hard as I wanted to remain positive, I saw it too.  But I was still hopeful that he would get better.

"I've gotten worse the past 5 days.  I've looked after animals a long time and I know what happens when they are about to die.  My kidneys aren't working right, my swelling is getting worse, the uric acid will build up.  I just don't think he will be able to turn things around this time."

"Let's give the medicine a little more time, it's only been a few hours," I said pleading with him.

"Don't go your chemo treatment tomorrow, I'm going to need you here," he said.

"We can make that decision in the morning, right now, let's just focus on you getting better, okay?"

"It's been a good run, Boogie, we've had a good life, two beautiful girls, great friends.  Don't think I could have asked for anyone to have been any better to me and you know I love you.  You've sure gone above and beyond the past few months," he said.

"I wish I could have done more for you.  You know I love you so much," I said.

"I know you do, I have never doubted that," he said.

Sometimes, during his illness, it seemed as though all I did was hurt him.  Changing bandages, giving meds, draining his Pleurx catheter, flushing PICC lines, things that had to be done that most of the time involved pain.  But they had to be done.  Even the mundane rituals like brushing his teeth were painful.  He had horrid sores on his tongue and gums.  Just looking at them made me hurt, but he never complained and did his best to brush.  And being the medical wimp that I am, it was sometimes difficult for me to do some of these things and John knew that.  But it was even more difficult for him, but he never complained.  He always thanked me for any task that I had done and though he wasn't able to help me any more, he would tell me to get the lotion and come sit by him and he would do the only things he was still able to do, rub lotion on my hands or feet.  Chemotherapy can cause neuropathy in your hands and feet.  John and I both had that, though John's was much worse than mine due to his swelling.  It is exacerbated by a lot of walking or standing.  Apparently, the medications given will leak out in the extremities and cause nerve endings to be impacted....and not in a good way.  It is actually very common.  Thankfully, mine would diminish some as time passed between treatments, though it never completely goes away.  John's stayed constant and he was beginning to lose feeling in his feet.  That caused him to be unsteady and I insisted he use the walker when he would get up.

We sat there holding hands, tears rolling down our cheeks, looking out the window.  What do you say?

To be continued....
PCQ