Transplant Delay

We got a call last week from Stanford.  It was Stephanie, the bone marrow transplant nurse.  She is all business and generally jumps right to the point of the phone call. 
"Sooooo," she started the conversation with the word drawn out so long I knew it must be followed by bad news "we're going to need to push the transplant back another week...."
"Ok...." I said, waiting for an explanation.
"We've had some problems with the donors," she continued "the first donor didn't pass the physical, the second donor has backed out and we're now on to the third donor who has committed to do it, but can't donate until the first week of December."
"Well let's hope the third time is the charm on this one!" I said and she laughed.
"This is where it can get a little stressful, but we ended up finding 4 perfect matches for Willie so we still have one to fall back on.  It will all work out, we just have to push the dates back."
She filled me in on the new appointment dates which now have us going down on November 26th.  It is frustrating to keep moving the date back, be we are happy to be able to have Thanksgiving at home with Will's family before the transplant.
Willie has been feeling good, but has had a hard recovering from this last round of chemo.  He has had to get a lot more blood than he has had to get on previous rounds and it feels like his recovery is stretching on and on.  His hand has healed nicely from the Staff infection and his white blood cell count is up so he can be out and about. 
On Friday we went back to Stanford for our usual post-chemo check up with Dr. Medieros.  We were expecting to see Brian, the fellow who works with Medieros, so we were surprised with an Eastern Indian man entered the room and introduced himself as the fellow.  He told us his name, but it was far to long for me to remember or pronounce.  He had dark curly hair and eyes so dark brown that you couldn't see the pupil.  I was reminded of Dr. Mitra who was the first Fellow we ever met at Stanford.  Like Mitra, this fellow also wore a wedding ring and I instantly wondered what his wife was like.  It's rare to see a wedding ring on a Stanford Dr.  I imagine the demand of being a Stanford doctor is like a marriage in itself. 
"How did the last round of chemo go?" he asked Willie.
Will filled him in on the Staff infection and hospital stay while the Fellow typed notes into a small laptop that he couldn't seem to balance properly on this lap.  He would type with the computer balanced on one leg and we watched as it teeter tottered back and forth.  I was sure he was going to type the computer right on to the floor, but he would catch it just in time and switch legs before beginning the balancing act again.
"My blood counts just don't seem to be recovering as fast as they usually do this round." Willie said.
"That's to be expected," the fellow replied, "we have given you a lot of toxic chemo in the past 4 months.  The body can only recover so quickly.  How is your energy level?  Are you feeling tired?"
Willie shook his head to the negative then paused "Well, I have been feeling a little tired, but that is because I have been on my feet all day the last couple of days supervising a job."
The Fellow's eyes grew big and Willie quickly explained.
"I'm not doing any plumbing," he said "I'm just supervising, but I haven't been on my feet all day for a long time and I've been a little tired."
A laugh escaped the Fellow's lips and we were caught of guard.
"Hey man," he said "you have every right to feel tired after working.  I can't think of anyone with Leukemia who even tries to work!"
We laughed. 
He assured Willie that he can continue to do tasks from his normal life as long as he feels up to it.
He then switched gears to talking about the transplant.
"If you think these last rounds of chemo have been bad, just wait till you see what we're going to do to you for the transplant." He smiled when he said it and was obviously trying to make a joke of it, but the humor was lost on us.
There was a brief silence in the room until I flatly said
"Well that's encouraging."
He quickly back peddled
"What I mean is we are going to give you a lethal dose of chemo.  The goal of the transplant dose chemo is to kill your immune system then give you a new one.  It will be far worse than anything you have experienced yet."
We just stared at him.  I knew he was trying to be helpful, but something about the way he was saying it was aggravating to me.
Finally, Willie spoke
"I've done really well with all of the previous rounds of chemo. I was a weight lifter before all this started and it has helped me handle the treatments better.  I have asked other doctors if the fact that I have done so well with other rounds will mean I will do well with the transplant chemo and everyone says I should be fine."
I looked over at Willie. I was proud of him for defending himself.  This guy didn't know Willie.  He had no idea what he had been through and how relatively easy it has been for him.  He knew nothing of Willie's record breaking character. 
He didn't know Willie.
"I agree with that." He said, nodding his head "and you're right, if you've done well so far there is no reason to believe you won't do well during the transplant."
He forced a smile, but I felt like he was humoring us. 
He examined Willie and typed some more notes in his teetering laptop. 
"You look great!" He said, looking up from the screen "We're waiting on your labs to come back, but I'll get Dr. Medieros and they should be back by the time we return."
He left the room and we sat in silence for a moment.
The next time the door opened the air in the room changed.
Dr. Medieros entered liked a rock star arriving at a party.  He smiled and shook our hands then tilted his head to the side and fixed his hair.  He was looking as suave as ever with a crisp, pressed button up shirt and khaki pants.  He was back to his usual hoop earring in his right ear which glinted in the light every time he turned his head.  He rolled the stool over and said down in front of Willie.
"So what is new my friend?" he asked.
Willie gave him a brief update and he nodded, but seemed disinterested.
"Well it sounds like you are headed to transplant soon." He smiled as he said this and looked genuinely excited for us.  Medieros has been the biggest champion of a transplant from day one so it must feel like a long awaited gift to see Willie find a donor.
We filled him in on the donors falling through and he nodded
"This happens all the time, but all you need is one and you'll get it.  You'll be fine."  He smiled and all of the anxiety the fellow had left us with disappeared.
"So do you want to meet again before the transplant?  Or do you want to say goodbye now?" He asked.
"Did you hear that Willie? He's killing you off now!  He's saying goodbye!"  I laughed at I said it, I couldn't resist.
Medieros laughed too when he realized what he had said.
"I don't mean goodbye forever.  We just don't follow any patients after they go to transplant.  I may see you around the hospital, but I won't be your doctor."
I was surprised to feel a twinge of sadness at this, especially since we didn't like like this doctor in the beginning.  He has certainly grown on us.
We decided that it's not worth a three hour drive to come for another check up so we said our goodbyes and relayed our deepest gratitude to Dr. Medieros. 
We left his office and returned to the cancer unit where Willie received yet another unit of blood.  We are hoping that will be the last one he will have to get until we return for the transplant. 
Life is good for us right now.  Willie is feeling good and the Giants won the world series last night!  I want to believe that they did it for Willie.  It's funny how many people have relayed congratulations to Willie as if he is the one that won the world series!  He deserves it though.  The Giants have been a consistent diversion during our whole journey and I feel like they have been the reason for many of Willie's good days.
Thank you Giants! 
And may next season be as exciting as this one!

A Quick Hospital Stay

Willie's blood counts crashed fast this round.  The Doctors told us to expect him to be hit harder on each round of chemo he gets, but this was his 4th round and every round previous he has had a good week after chemo to enjoy life before his counts drop.  This round he was not so lucky. 
We knew it was going to be a wild ride when we reported to the cancer center on the Monday after his Friday chemo treatment and he already needed red blood cells.  We optimistically thought that because his counts dropped faster then they must also rise faster.  Chemotherapy follows none of these rules.  Instead of rising faster, we have been treated to two weeks of continually low counts with blood and platelets transfusions as a reward.
A couple of months ago we got a new back door.  This is BIG news because our previous door could hardly pass as a door since our dog had chewed up the greater part of the bottom half.  It seems she has outgrown her door-chewing habit so it was time for a new door.  We had a cat door installed that is just big enough for her to stick her head out of, but not escape.  The bad news of the new back door is that the threshold is much thicker than the previous door and we have all tripped over it.
Last Friday night, Willie was coming through the back door while carrying some cans in his hands.  His foot caught on the threshold and he fell on his right hand.  His hand was in a fist and he caught the full weight on his knuckles.
"OH NO! OH NO! OH NO!" I shouted, as I tried to empty my hands to get to him.  (We later laughed at my ridiculous response.)
We inspected his hand which had the tiniest of tiny scrapes on the pinkie finger knuckle.  It was sore, but it didn't seem like too big of a deal.
And it wouldn't have been a big deal IF he had an optimal functioning immune system.
But he doesn't right now.
On Monday we went back to the cancer center for his usual lab work.  His hand was now red and streaking and he had a small tempurature when we got there.  The nurses tossed around the idea of sending him to the hospital, but Willie was entirely against it.  Dr. Talebi wasn't in to look at his hand so another Hematologist came by to have a look.
"It looks like you've got yourself some cellulitis there." He said, as he sat down on the edge of the bed to exam Will's hand.
He poked a prodded a bit then continued "I'll write you a prescription for an antibiotic and you'll need to keep it clean with antibiotic ointment on it."
"So I don't need to go to the hospital?" Willie confirmed, with obvious relief in his voice.
"No," he said, "not unless it gets worse or you get a fever."
We sighed in relief as he left to write a prescription. 
Willie had to get blood and platelets so we were at the cancer center all day.  They put us in a private room and it seemed to make the time go by slower without the passing foot traffic to look at.  There was a picture on the wall of a coastal lighthouse scene that I spent a greater part of the day looking at.  In the picture there is a house on the water that has a sun deck with a beach chair.  The house across from it has a table with chairs. 
"Would you want to live at this house with the beach chairs or the house with the table?"  I asked Willie as I pointed at the picture.
"The house with the table looks bigger." he replied
"Yeah, but the house with the beach chair is right on the water." I rebutted.
"We can still see the water from our house with the table." he said
"Our house?" I said, suppressing a laugh.
"Yeah," she said, a smile playing on the corner of his lips "we live there."
I laughed out loud. 
These are the moments I love.
We stayed at the center far too long and finally got home around 7PM.
We at dinner then he started to run a temperature again.
I hate the feeling that comes along with a rise on the thermometer.  We have a "quick read" digital unit so it's easy to tell that his temperature is high if it takes more than a few seconds to spit out the reading.  I caught myself counting my own heartbeat in account of how long it was taking. 
3 heartbeats; his temp was normal.
4 heartbeats; it was getting higher.
5 heartbeats; his temp was dangerous.
His temp bounced up and down like those colorful bouncy balls I would get from the 25 cent machines when I was young.  I loved those balls and collected them by the dozens.  I found a particular thrill in throwing a handful on the ground at once and then trying to catch them all.  It was a futile effort and always ended with a ball being lost in the busy street we lived on. 
Temperature bouncing provides that same thrill, but the stakes of loss are much higher than a neon bouncy ball.
When the thermometer reached 101.5 I demanded a trip to the ER.  Willie wasn't happy with the idea, but I have seen too much cellulitis in my family in the past that has not ended well.  I packed a quick bag and we drove to Chico.  He took his temp ever 15 minutes on our drive and it wasn't coming down.
I was on the verge of panicking when we reached the ER.  He needed attention NOW!  It was 11:20 PM and there was a handful of people in the ER. 
"What's the problem?" the girl at the front desk asked me as we check in.
"My husband has Leukemia and is running a temperature." I said through the impossibly small hole in the glass.
She stared back at me blankly and I wondered it my voice hadn't carried properly through the glass.
"So he has a fever?" she asked in a tone that suggested I was a hypochondriac wife who should have kept her husband home and gave him Tylenol.
"He has LEUKEMIA!" I emphasized.
"Ok," she said, and pushed some paperwork out to sign.
"He can't be around people because he has no immunity right now," I continued "Is there somewhere we can sit away from people?"
"There's no where private out here," she said flatly "You can stand by that desk if you want or wait outside."
He indifference was irritating.
We chose to hover by the desk.
I scanned the people in the room trying to guess what ailment had brought them there. In the corner a young couple huddled together, the girl doubled over in pain as her doting boyfriend rubbed her back.  Across the aisle sat two middle aged women talking and laughing like they were in a coffee shop.  On the back wall an elderly woman held hands with her daughter as they discussed politics.  Everyone was a threat to Will's health and I despised them all for being there. 
After about 20 minutes they called his name and we were taken to a bed in the middle of a hallway.  The nurse motioned for Willie to lay down.
"Can I have a private room?" he asked and the nurse started to shake her head to the negative "I have Leukemia and I shouldn't be in a hallway around people."
"Oh," she said and instructed us to follow her down the hall.
She led us to the room next to the original ER room where Willie had his first bone marrow biopsy.  I shuddered as I passed it.  Those are memories we will never forget.  I wondered how many illnesses that room had seen.
The ER doctor came in rather quickly and looked at Will's hand.
"We'll need to get you some IV antibiotics for the cellulitis," he said immediately after seeing the wound.
"I also think we need to admit you for a few days to make sure the infection didn't get into your blood."
We nodded in consent, but Willie was not happy about it.
"I don't want to stay here." she nearly shouted as soon as the doctor left.
"I know," I replied "I don't either, but we need to get this infection under control."
He sighed and rolled over.
A nurse came in a few moments later to take some blood.  She was an older nurse and I had little confidence in her skill.  It started when she entered the room and left the door wide open. 
"Would you mind shutting the door?" Willie asked politely amid the sounds of someone coughing up a lung just outside our door.
"No problem," she said "It is loud out there with everyone who has the flu.  It's really going around."
I suddenly felt like she was a walking flu virus.  How many people had she helped already who had the flu? 
She pulled out a rubber band and tied off Willie's picc line arm.  This is the first time we have ever seen anyone do this and it is entirely wrong.  It would be appropriate if she was drawing blood from his vein, but the picc line flows directly through the vein and needs no tying off.  We didn't want to tell her how to do her job, but I bit my tongue as she tried to pull blood from his tied off picc line and complained that nothing was coming out!
She finally got a small sample of blood and took his blood pressure.
"Can you take my temperature?" Willie asked, when it became apparent that she had no intention of doing so.
"Oh sure" she said "If you want."
We couldn't believe it!  That's the whole reason we had come to the ER was because of a fever and these people didn't even feel the need to check his temperature!
!!!!
I felt irrational in that moment.  Like a mama grizzly defending her cubs from ill trained ER nurses.  I wanted to steal the bag of IV antibiotics sitting on the counter and administer it to Willie myself in the safety of our home. 
Another lab tech came in a few minutes later to draw more blood.  We told her what had happened with the previous nurse tying off the picc line.
"She did what?" she asked in shock "That means that blood sample is worthless!  I'll have to draw everything again."
And she did.
They started Willie on the IV and everything got quiet. 
The hours passed slowly and we saw no one.
Willie dozed on and off, but there was no option for sleep in the lawn chair-esque seat I was occupying. 
By 3AM I was annoyed.
Had they forgotten we were there?
4 AM rolled around and still no one had come.
By 5 AM we were just mad.
At 5:30 AM a new doctor wandered in our room.
He introduced himself as the admitting doctor in the ER and said he had received orders to admit Willie and would begin the process immediately.
"He's just starting the process now!" I said to Willie as soon as the doctor left "This is just silly!"
In our past ER visits it took nearly two hours after the admitting doctor came in to get a room so we knew it would be a while.  It was simply ridiculous. 
Finally at 6:30 AM we got a room on the cancer floor, a mere 7 hours after we had arrived at the ER...! 

The nurses creative use of tape...

On Tuesday Willie received more IV antibiotics and some blood and had no sign of a fever.  By Wednesday morning he had still been fever free and we were anxious to go.  The doctor agreed he was good to go home and we left around 2PM on Wednesday. 
I can't say I'm anxious to EVER go back there.
On Friday we went to see Dr. Talebi.  He was nicely dressed in a blue striped shirt with a bright red tie and khaki pants.
"You look classy," I said as he entered the room.
He looked down in surprise as if to remind himself what he was wearing.
"Oh yeah," he said "I was cold."
He took a seat on his rolling stool and looked at Willie.
"When I heard you were in the hospital with another infection I was going to go over there and yell at your for not wearing your mask.  Then I heard you had fallen and got the infection and I thought 'well this time it wasn't his fault'!"
We all laughed at this.  Talebi has yelled at Willie in many of our past visits for not wearing his mask so this was a welcome change. 
"You have had quite the list of infection" he said as he listed some of the bacteria Will has had in his past cycles.  He ended by listing the Staff infection that they had discovered in the cut on his hand.
"I have never had a patient with so many different bacteria!"  He laughed.
"You are a microbiology students dream!"
We all laughed at that, then the mood grew serious as he leaned in.
"But you both have learned a lot," he said, looking from one of us to the other "I don't have any patients that are on top of their care like you are."
It was a tall compliment indeed.
"I remember when I was in med school and I had to memorize the name of one bacteria," his eyes grew distant in memory "It took me 4 weeks to memorize that ONE name and you guys spout off every bacteria Willie's had like it's nothing!"
Haha!
We have learned a lot in an incredibly short amount of time.  It's crazy to think that its' only been 5 months since this all started.
We told Talebi about Willie's bone marrow match and he was visibly excited.  He then informed us that he won't be here when we get back from the transplant.  He has decided to go back to Miami where he came from.  When we asked why, he simply said that Miami is more his style.
I guess that explains why he was cold on an autumn morning while the rest of us are breathing a sigh of relief from the heat.
He has been a great doctor and we will be sad to see him go. 
Willie's hand continues to improve and his counts have been holding steady.  He should be out of the woods this week so we can enjoy a good month of "normal" living before we go down for the transplant.
They have pushed the transplant back a week due to a conflict with the donor's schedule so we are now going down the third week of November and he will get the transplant on November 29th.  Thank you all for your continual thoughts and prayers.  It is the reason we are still kicking!