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.

The Radiation Team

Last Thursday we arrived at the Stanford cancer center at 1PM.  We were scheduled for a 4 hour appointment with the radiation team, but we had no idea what it was about or why it was going to take so long.
We were taken to a small room with Pumpkin colored walls and a radiation Fellow began asking us questions.  She was young with dark brown hair and small facial features that gave her a childish look.  She was firing question after question about Willie's medical history and medications he has been prescribed in the past 6 months (which is quite the lengthy list!)
Our answers were short and rebounding as quickly as her questions.  Her hands flew across the keyboard with each response.  She began to read another question from the computer screen when she suddenly stopped and looked up at us.
"Do you have any idea why you are here today?" she asked.
It was as if she had read our minds. 
"Uhhhh, not really." Willie responded "We just know it is supposed to be a 4 hour appointment."
How incredibly disconnected we sounded.
She smiled and turned toward us.
"Today we are going to get you ready for radiation treatments which means meeting with the doctor and radiation team to get measurements taken."
We nodded as if it all made sense, but I was inwardly noting that what I thought I knew about radiation was apparently false because nothing I was aware of included measurements.
"We are already running late which is why I have to rush through these questions before Dr. Million comes in."
She said "Million" with an accent over the "o" in a way that reminded me of fillet Mignon.  It sounded so exotic and ritzy.  I felt under dressed, like we were about to be in the presence of a famous Spanish Dr.
We finished answering her questions and she left the room to get the attending Dr.
"I thought her name was Million like a million dollars.  Did you hear the way she pronounced it?" I asked Willie.
"Yeah," he said "It was fancy."
I had an image in my mind of a sultry Spanish Dr with dark hair and a deep accent so it was a shock when a blond, middle aged, mom-looking woman walked in.
"I'm Dr. Million" she said with no exciting accent.  She pronounced her name without any flair and I found myself feeling a little disappointed.  My vision of her was so much better.
We shook hands and she sat on a stool near Willie.
"We are short on time, but I wanted to go over all the risks and benefits of Radiation treatments and answer any questions you have."
We nodded and she continued on without missing a beat.
"Radiation will kill the cancer which is our main goal, but it comes with side effects.  You will experience nausea as 100% of patients complain of this.  You will lose your hair, but it will come back,  you will be exhausted and may sleep most of the day, you may have problems with cataracts later in life and you may develop another form of cancer later in life...."
I found myself tuning out as she rattled on.  I could see her lips moving, but I felt overwhelmed by the laundry list of side effects.  I felt like we were sitting through a live commercial for a drug in which the benefits are discussed for 5 seconds while the rest of the commercial is filled with warnings and side effects. 
I looked over at Willie as he listened to the Dr. and nodded from time to time.  She spoke directly to him as if he was the only one in the room. 
"You will not be radioactive," she said as I tuned back in "The second you leave the room you will no longer have radiation in you.  It's like going out in the sun and coming inside.  The sun is no longer on you once you go indoors, but the effects can happen later like developing a sunburn."
"Do you have any questions for me?" she asked Willie.
He nodded his head no
"I think you covered my questions."
She smiled and stood up. 
"Ok then, we need to get your downstairs to get your fitted for the machine."
"What does that mean?" I asked.  We had heard the term a few times now and the images that came to mind were from the scene in Star Wars when Harrison Ford got stuck in the metal casing.  That is what I thought of being fitted for a machine.

"The lungs cannot be exposed to radiation so they will be taking measurements and using x-rays and a ct scan to make a special shield for Willie's lungs that will protect him from the radiation."
What a concept!
The nurse took us down the back stairs on a "super secret" route to the radiation department.  They rushed Willie directly into the x-ray room where a man and woman were waiting for him.  They began working on Willie like he was a piece of equipment, positioning him against a wall while taking measurements and noting distances.  A machine projected a giant "X" on his chest and the nurses were moving Will to center the mark over his lungs. 
They worked in silence, the only sound in the room being a low hum from the x-ray equipment.  It was unsettling.  I sat in the corner holding Willie's sweater and hat tightly on my lap. 
Finally, the man nodded to the woman and they turned toward me.
"We all need to leave the room now for the x-ray" the woman said and lead me into the hall.
They took pictures from the front and back then moved Willie next door for a CT Scan.  He was handed off to a new pair of male nurses who were much more personable.  They talked and joked with Willie as they positioned him on the table then ushered us all out of the room.  The scan took about 3 minutes.  When the heavy door opened I laughed when I saw Willie bent over with one of the nurses picking up change from the floor.
"Did he give you a tip?" I asked the nurse.
He laughed and offered a handful of pennies to Willie which were placed back in his pocket.  We walked down the hall to the jingle of pocket change and were placed in yet another examination room.  After a few minutes a female doctor with a heavy Chinese accent entered the room.  She was from a research study group and wanted Willie to participate in a research study.  After the radiation incident in Japan they are working on developing methods of handling an incident like that if it were repeated in the US.  They will take Willie's blood before radiation and during radiation to look at changes in genes and proteins.  The idea is to identify specific changes that occur after a person has been exposed to radiation in order to test people if needed in the future.
Willie agreed to help in the study and she was visibly excited.
"Thank you!" she said "You will be participant number 257."
She had him sign some waivers then left with a bounce in her step.


Not a Sauna!

A nurse poked her head in the room and announced that they were running behind and that there would be an hour wait until the last part of our appointment.  We decided to walk upstairs and spent the hour listening to a woman playing a grand piano in the common area.  It was a relaxing break from an emotionally racking day.
We returned to the radiation department and were taken into a white room with a hard wood sauna in the middle.  It was a simple box made from beautifully stained wood with a glass doors.  We knew this was the radiation treatment room, but I couldn't wrap my brain around what I was seeing.  The nurse motioned toward the sauna looking box
"This is the radiation booth," she said, as if we were site seeing from a tour bus "this is where you will be receiving your treatments."
She invited Willie to get inside the booth and began adjusting levers and taking measurements. She had Willie place his hands on two bars that hit him about mid thigh.
"We are going to trace your body so I'll need you to stand as still as you can for a few minutes."


The machine that delivers the radiation

A second nurse turned off the lights and I watched as the shadow of her hand traced around Willie's limbs.  This took a few minutes then they turned the lights on and began measuring the distance from Will's face, neck and body to the glass door that will be shut in front of him.  It was only a few inches from his nose to the door and I found myself feeling claustrophobic just watching him stand there.
He was so patient with the nurses, but was out of the booth the second they said he was done.
"You'll have to stand there for 8 minutes, three times a day."  The nurse explained.
"I got an itch on my head when I was standing there," Willie said, pointing to his head "I won't be able to scratch it when I'm getting radiation will I?"
The nurse laughed "It never fails that the second you have to stand still, everything will itch!  I hear this from almost everyone.  You are free move back and forth a bit and scrunch you face if needed, but no hand movements.  It's hard, but you can bring your own music if you want to keep you distracted."
That sounded like a good idea. 
The nurses were kind enough to walk us to the lobby and send us on our way.  The next time we see them it will be for radiation,  It's a notion that is scary, at best.
I left with an irrational feeling of fear that I haven't felt in a long time.  I think there is a fine line between being well informed and being told too much.  I felt the info we had received had crossed over into the category of too much information. 
As we talked on the way home we realized it was the same feeling we had before Willie began chemo the first time.  It is fear that is fueled by the unknown.  Willie has responded well to every treatment he has received so far and we have no reason to believe that he wont skate through radiation as easily as he has the chemo. 
 
If we have learned one thing, it is that everybody responds to cancer treatments differently and most of the warnings they provide for treatments don't actually occur.  We have been so blessed that Willie has handled everything well and appreciate all of your thoughts and prayers in our behalf to help us weather the storm.  We are most grateful for our family, friends and faith that carry us through the dark days and into the light. 
We know there is a rough road ahead, but we have faith and trust in a loving God who will see us through this trial and make us better people in the end.
Keep the prayers coming!  We can never have enough!

The Bone Marrow Biopsy Drill

Halloween 2012

Things have been pretty quiet since I last posted.  We had a rainy Halloween without a lot of action; My parents came to visit for the weekend and we had a fantastic time; otherwise we have been living life as usual.  Willie has been feeling good and has been out and about running errands and taking care of things.
On Monday of last week he complained of having sensitive skin on his left thigh.  It continued on Tuesday and was making him very uncomfortable.  On Wednesday we were getting ready to go to Stanford when he noticed a rash that had appeared where his skin was sensitive.  A red, angry, shingles rash.
Oh Boy!
We got to the Stanford hospital campus to find it in an uproar of construction.  We parked in a car lot that was farther away from our usual lot, but still a short walk to the hospital.  We started walking, but Willie was slow and limping to keep his pants from rubbing on the shingles site.  He crept along at a snails pace and I worried we would miss our appointment.  Just then a golf cart pulled up and offered a ride to the hospital.  It was divine intervention!
We made it to his first appointment on time which was a pulmonary lung function test.  His insurance is requiring him to complete a series of tests in order to confirm he is healthy enough to get a transplant.  This is the second time he is taking these tests in the past 4 months.  It seems a bit of a waste of resources to test him twice, but we are willing to do whatever it takes to make the insurance folks happy.
After the lung test he had an echo cardiogram where they map his heart with an ultrasound machine in the same way they check on babies in the womb.  It was interesting to watch his heart beating on the screen and observe the tech as she pushed and prodded in order to find the valves opening and closing with each beat. 
He checked out fine on both tests so we headed to the cancer center for his biopsy.  The cancer center is just down from the hospital and is about a 3 minute walk away.  Because of the construction, there is no route to walk to the center so we were directed to a van to drive us there.  It was a winding route by car that took 15 minutes and seemed like the longest ride ever.  We got ourselves a driver named Frank who was quite the interesting fellow. 
"Hop in guys," he said to us as he pushed a button that opened the van door "I'll take you to the cancer center although I can't guarantee we'll get there fast.  I've only been her 2 hours and I'm learning the route."
He clearly wanted us to ask about that so we did and he told us about the company he works for that supplies drivers wherever they are needed.  He had been in Southern California the night before and had received a call to go to Stanford the following day.
"Wow!" I said "what an interesting job, do you have family you leave behind?"
He looked at me in the rear view mirror and said
"No, I've screwed up all of my marriages.  There is no one waiting for me."
It was the saddest thing to hear so I was surprised when he started laughing
"It's really a good thing that I'm not married.  I tried it a few times, but I couldn't find a woman that I love more than cars.  I always say the first lie I ever told to my wives was that I loved them more than cars."
I think it was a joke, but it fell flat on it's face.
Willie was sitting in the front seat and remained quiet.  I was uncomfortable in the silence, but wanted to see what would happen next. 
He began naming off the cars he had owned in the past.  Willie nodded as he named them, acknowledging he knew the make of the car.  I just felt sorry for him.  It was a surreal moment to be listening to a man declare his love of cars while we were en route to a cancer center to meet with people who will save my love.
Sad.
We checked in at the cancer center and asked them to page Carl, the dr who has done most of Willie's previous biopsies, and let him know we were ready for the biopsy.  We had been told to do this and if Carl could break away he promised to come.  We told the front desk that it didn't matter to us if Carl couldn't come right then, we were willing to wait all day if necessary.  The receptionist clearly thought we were crazy and explained that they run on schedules and can't just accommodate our request of doctors. 
She must not know Carl.
We waited for nearly an hour which we decided was a good sign that they were waiting on Carl.  They got Willie set up in a room and a man came an introduced himself as the doctor who would be doing the biopsy.  He was a short man of Eastern Indian decent with a shaved head and dark rimmed glasses.  He had a warm smile and a twinkle in his eye that told of a healthy sense of humor. 
"No offense to you," Willie said, eyeing the doctor up and down "but we have a doctor we like and we are waiting to hear if he is available to do the biopsy."
"No problem!" He said, "What's his name and I'll see if he's been contacted."
We gave him the info and he disappeared for a few minutes.
He returned with bad news
"I just talked to Carl and he is not available, looks like your stuck with me." he laughed as he said this and we felt more at ease "I've done thousands of biopsies though so you can be assured I know what I'm doing.  Why don't you tell me what you like about the way Carl does it."
I appreciated his attitude.  Most doctors egos get in the way of offering the care the patient desires, but this doctor wasn't offended that we liked Carl.  It was refreshing.
We told him about the wonders of Carl and he nodded as he listened.
"So you like that he's quick," he said when Willie finished talking "I will use the drill today and is very fast."
Willie sat up straighter, visibly tense.
"I'm not sure about the drill." he said, "I work with power tools and I can't stand thought of it."
Dr. Lenny pulled out a small drill that looked like a hot glue gun in a neon orange case.
"Here is the drill," he said, holding it toward Willie "It's probably nothing like what you use.  It is a DeWalt drill in a fancy case though."
He buzzed it a few times to show that it wasn't very loud.
We all looked at Willie as he turned over the options in his mind.
"Should I try the drill?" he said to me as if we were discussing menu options and he had to decide whether he should order steak or chicken.
"Sure," I said "At least it will be faster and you can see how you like it."
"We'll go with the drill," he said to the Dr. and the fun began.
Lenny had him lay on his stomach and covered his hip in iodine.  He filled some syringes with numbing fluid and began numbing the bone.  Willie entered his "Zen Zone" which has become his way to deal with the biopsies.  He hums deeply to himself to drown out any other sounds.  We probably should have informed Lenny of this before he started because he pulled his hands back from Will's hip the second the humming began.
"Am I hurting you?" he said, clearly shocked at the deep moaning noise that came from him touching an area of skin he had already numbed.
Willie nodded his head no and kept humming.
"He's OK," I explained "this is his M.O. for biopsies.  It helps him relax.  He'll tell you if it hurts."
He nodded and began inserting the long biopsy needle.
"So do you have kids?" he asked casually as if we were having a conversation over lunch.
"Not yet," I answered "Our kids are frozen right now."
He laughed and continued drilling with his hand.  He gave the instrument three quick turns then connected the drill to the top.

"Ok Willie," he said "One quick drill"
He pushed the button and the instrument drilled deeper into Willie's hip.
"Ow!" Willie shouted and Lenny pulled his hand back.
"Are you feeling pain?" He asked
"No," Willie said, and I relaxed a bit "It just felt weird."
Lenny nodded, then continued.  He began pulling the marrow fluid from Will's hip.  Will made some faces and said it was a bit painful, but Lenny helped him breath through it.
He handed the fluid to the lab tech who placed it in the lab dish, swirled it around a few times then turned to the Dr and smiled. 
"Looks good!" he said.
Lenny nodded and attached the drill to the instrument and with one quick twist, removed the piece from Willie's hip.
I checked the clock. 5 minutes in.
"You're doing great baby," I reassured Willie "We're almost done!"
Lenny nodded as he loaded a slightly larger drill bit onto the drill. 
"We just need a bone sample now."
I shuddered inside.  This is the worst part of the biopsy.  They don't always require a sample of the bone so Willie has only had to do this part of the procedure 3 times.  They obtain the sample by drilling an hollow tube into the bone and wiggling it back and forth until the piece pops out.  Then they push the bone sample out of the tube into a lab dish.  The sample is usually 1/2" in length and requires a lot of pressure and drilling on the part of the Dr. doing the biopsy.
Lenny inserted the metal tube and gave it a few turns with his hand before attaching the drill.  He secured the drill and informed Willie he was about to drill.  This time he drilled deeper and my eyes nearly popped out of my head as I watched the drill bit disappear.  I was sure he was going to drill the entire thing into his hip and wanted to scream at him to stop, but Willie did it first.
"OWWWW!" He yelled and the Dr. stopped.
"Are you feeling pain?" he asked again.
Willie breathed in deeply and let it out before answering.
"I guess it's gone now," he said "I just felt that nerve pain down my leg."
This has happened in previous biopsies and is apparently normal, but incredibly unpleasant.
"Well I'm done now so I just need to remove the instrument." he said to Willie "are you ready?"
Willie nodded and he attached the drill to the short end of the instrument that was poking out of his hip.
The drill buzzed its exit as Willie again yelled out in pain. The doctor quickly applied pressure to the sight and announced he was done.
It had been 15 minutes.
Carl still holds the record.
Willie began to relax and I turned my attention to Lenny as he tried to get the bone sample out of the hollow instrument.  He inserted a smaller tube to push the bone from the instrument into the lab dish.  This usually works, but he was struggling to get it out.  He handed it to the lab tech who tried to shake it out of the tube.  My heart sank as I considered the possibility that they may not get the sample out of the tube and would have to repeat the test. 
They looked at each other and shrugged.  I appreciated their silent communication to keep from alarming Willie of a problem, but it was easy to see that they were frustrated.  Lenny took the tube back and tapped it a few times on the edge of the counter then tried again.  This time the sample moved and he began pushing it into the dish.  The eyes of the lab tech grew wide as he observed just how big the sample was.  I too was shocked to see that the section of bone he took had to be close to 2.5".  It was at least 3 times bigger than any of his previous samples.
"Well the lab will certainly be happy with the sample size we provided." Lenny joked to the lab tech.
"Yeah," the lab tech replied, still staring incredulously at the bone sample in the dish "this is the biggest I've ever seen."
And there Willie goes again with the record breaking.  He now holds the record for the largest bone sample from a marrow biopsy.
I wonder if there is a world record book entry for that...
Lenny bandaged him up and asked what he thought of it.
"I'm not sure yet." Willie said "It was fast though, that's for sure."
"You're lucky you got Lenny," the lab tech said "He is the best guy for biopsies at this hospital."
Lenny shrugged and thanked him and the lab tech left. 
We are still partial to Carl.
Lenny looked at Will's rash and diagnosed Shingles.  He gave him a prescription and advised me not to be near him.  I informed him that I have already had shingles and he relaxed.  What a strange blessing it is that I have already had the virus as a child and will not have to be separated from my husband because of it.
We left the cancer center very slowly.  Partially because of the shingles and the other part due to the biopsy.  It was a terrible combination.
We stayed at Stanford that night because of our appointment with the radiation team the next day.  That turned out to be my least fun day ever.
Stay tuned for more info on that...