And Yet Another Transplant Delay..

This week has been chaotic.  As the transplant has been approaching I have been working to get everything in order for our 3 month absence, but it just hit me on Monday of last week that I only had 5 days left.
Panic ensued.
I had far too much to get done in that short amount of time and it seemed that with everything I checked off my list, I replaced with two more things to do.  By Wednesday I was frazzled and working speedily to get orders placed for our store before the day off for the holiday.  Willie went to Chico to get his PICC line dressing changed and get some labs done. 
When we met with the transplant doctor a few weeks ago she was concerned because his liver numbers were elevated which indicates inflammation of the liver.  He had been taking vicodin for the shingles pain which can cause liver inflammation so she expected this was the cause.  He quit taking pain meds that day and the labs on Wednesday were to make sure his levels were coming down into the safe zone. 
I got a phone call around 3 PM.
"Hi Missy, this is Dr. Laport," she talks quickly and always sounds out of breath "I just got a copy of Willie's labs from today and his liver is still inflamed; the levels are better, but still not optimal.  We're going to have to push the transplant back."
I was speechless.  She hadn't even asked how I was doing.  This seems to be a running theme when doctors make phone calls.  They jump right to the subject matter as if we are continuing a conversation that had been put on hold.  I'm a fan of formalities.  A simple "How are you?" would have put me at ease in this situation.
"OK...." I exhaled as I said it "How long are we talking about pushing it back?"
"We've already created a new schedule for Willie and he's set to start everything on December 31st."
I felt like I had the wind knocked out of me.  That's a whole month away!  I feel like I have been running a race to get to the transplant and the finish line had just been moved on me.  I didn't know if I could keep running.
"Why do we have to wait a whole month?" I asked in a tone that must have resembled a whinny teenager "if his liver is getting better, can't we just push it back a week or two?"
"We could do that if the donor was related," she explained "but with unrelated donors it gets a little complicated.  We can't ask the donor to wait a week or two and see if Willie's labs are good enough to move forward with the transplant.  These donors have lives, and jobs and families and they need to know far in advance before they donate. Also, the holidays are coming up and there is no way we can get a donor to commit around Christmas."
She paused for a moment.  I felt like she was waiting for a response, but I had nothing to say.
"Look," she said, her voice softening "I know this is a let down for you guys, but we need Willie to be in the best physical condition possible before the transplant.  If we went ahead with the transplant now he would go into liver failure and die.  It will be good for him to take a month off and allow his liver to heal.  We have offended his liver with toxic chemicals for 6 months straight so it will be good to take a month off."
I sighed deeply into the phone.
"I understand," I said "and I agree with you, this will be the best for Willie."
"It will," she said and I could almost hear her nodding her head in agreement. "We can't forget that he is the one getting the transplant here!"
We laughed.  I think we have both been guilty of trying to fit Willie's care into our schedules.
"So what do we need to do in the coming month?" I asked.
"Nothing." she said simply "You just relax and enjoy your time at home.  You don't need to worry about his Leukemia coming back because his last biopsy was perfect.  I'll schedule you to get labs and a CT scan of his liver in about two weeks, but other than that, we'll plan to see you after Christmas."
I thanked her, wished her a happy Thanksgiving and hung up.
Then I fell apart.

This is what I came home to one day. 
This is how you know Willie is feeling better!

It was like a 5 gallon bucket of emotions had been dumped on me.  I was feeling everything from relief to anger and none of it made any sense. 
I called Willie to tell him they had moved the date.  I explained what the Dr. had told me and he responded the same way I did.
"Can't they just push it back a week or two?" he asked.
I explained the situation with the donor and the line was silent.
"What do you think?" I said into the dead air.
"It's not like we have a choice," he said "we have to do what they tell us to do.  I'm actually happy about it.  I was hoping I could have some time to just live and do things while I feel good."
I cried. 
It was so selfish of me to want the transplant to occur on my time schedule.  There is a huge part of me that wants to get it over with so we can move on with life, but I often forget that life is happening in the mean time.
I always appreciated a saying that my grandma has hanging on her kitchen wall.  It is written in Swedish and I could never remember what it meant.  Each time I visited I would ask Grandma what it said.  She would respond by reading it to me in Swedish.  I loved to hear her speak it. 
"What does it mean?" I would ask.
"All these days that came and went, I didn't know that it was life."
I remember her telling me that as I sat in her kitchen that was littered with empty cups and dirty plates that the family had left behind from lunch.  There was laughter and the shrieks of playing children coming from the next room.  She came around the counter and reached down to pick up a playing card left on the floor from a roaring game of cards that had occurred the previous night.  She placed the card on the table and wrapped an arm around me.
"It means all this," she motioned her hand around the room as if to include every inch of the her home "is what life is all about."
I needed that memory this week and will always be grateful to my Grandma for teaching me that lesson when I was young.  I have been so caught up in getting the transplant over with that I have been missing the days in between. 
We have complete faith that everything happens for a reason and that this delay with the transplant is what needs to happen.  Now that I've had a few days to process it, I am happy that we are not going down for the transplant today.  It will be so good to celebrate the holidays with the family and spend time together with Willie in good health.
That is what I am most Thankful for this year. 
Good health and great family.
I hope you all had a wonderful Thanksgiving.  We enjoyed the day with Willie's family.  I don't imagine I'll have much to blog about in the coming weeks before the transplant, so I hope you all have a wonderful holiday season and enjoy every moment of this thing we call life.