A Liver Biopsy

The dogs were pooped after playing with their Christmas toys

When I was young, I loved a good rain storm.  I would watch with fascination as the rain dripped down the window, each drop pushing the previous drop down the glass.  I loved riding in the car and hearing the rain pound on the metal of the car.  It was a symphony to my young ears.
On our way to school each morning we passed over the train tracks and under an overpass bridge for the highway.  We loved to throw our hands in the air and shout "WEEEEEE" as we went up over the tracks and under the bridge.  It was like a daily theme park ride for 3 young siblings.
I especially loved this ride when it was raining.  I would listen to the rain pounding on the roof of the car as we crossed the tracks.  It felt as if we were being launched directly into the source on the rain before we came down again and under the overpass.  The rain would abruptly stop as we drove under the cover of the bridge and the stark silence that it provided from the pounding rain was always profound to me.  I would hold my breath as we passed under the bridge to thoroughly enjoy the silence before we drove back into the pounding rain.
For me, that was heaven.
These past few weeks have reminded me of that kind of serenity.  I feel like I have been holding my breath and enjoying the silence that has existed in our lives before the rain begins again.  We had a most enjoyable Christmas.  I got Willie what I consider to be the best gift of all time.  In November, when we thought he would be getting the transplant, I was struggling to think of a small gift that would be meaningful that I could give Willie for Christmas in the hospital.  I wracked my brain for weeks when I had a stroke of genius:  I would get our dog DNA tested so we can finally know what breed she is!  I did a lot of Internet research on the matter until I found a company that can test the dog's saliva to determine breed.  I sent away for the kit and when it arrived, Kona and I had a show-down with the cheek swabbing.  She wanted nothing to do with the long Q-tip I shoved in her mouth, but in the end, I won and send back the kit with her DNA in it.
I got the results of her test in the end of November and could hardly keep it secret for a full month.  As Christmas approached, I thought I would explode from anticipation of him opening his gift.  On Christmas Eve we went to Willie's parents house for hours devours and opening presents.  It was a battle between me and our 10 year old nephew to see who was more antsy to open gifts. 
I scarfed my food and asked if I could give Willie his gift right then. 
I simply couldn't wait another minute. 
I had printed off the results of Kona's test and put them in a folder then wrapped in brightly colored Santa paper.  I had written on it "To: Willie  The BEST gift ever!!!!"
Attached to the top of the gift was a smaller present that I instructed him to open first.  He removed the paper to reveal a wooden ornament of a dog that looks like Kona.  Above the dog is engraved "Icelandic Sheepdog" and below it reads "Kona 2012."
"Is that what she is?" he said to me, holding the ornament in the air as he admired it.
"Don't ruin it for yourself!" I shouted "Keep opening."
He removed the paper with the speed of a snail, knowing full well that it was making me crazy.  He pulled out the folder and looked at the pictures.
"She's a sheepdog?" he said.  It was almost a statement, but had a hint of question that revealed the years of wondering and researching he has done to find out what breed she is.  We've had Kona for 3 years and she came to us from a friend that found her in a park.  She is a beautiful dog that doesn't resemble one specific breed that we could tell.  Willie had spent hours looking through a giant book of breeds entitled "The Dog Bible" and we had held many a conversation on guesses of her genetic make up.
Neither of us EVER guessed sheepdog.
The test showed that one of her parents was a pure bread Icelandic Sheepdog and the other was a mixed breed with varieties of terrier, shepherd, and chow chow.  As we have read more about the sheepdog it is clear that she gets a lot of her personality traits from that side of her make up.  He is definitely a herder of things and people and enjoys most to herd the neighbors cats back into their yard.
"Is it the best gift ever?" I asked Willie as we finished looking at the report.  I was still breathless with excitement that wouldn't wear off for the rest of the night.
"Yeah," he said, casually "It's pretty good."
I laughed as he got up to find Kona and tell her that she is a sheepdog.  That is the moment I was looking forward to from the time I had the idea to get her tested.  I couldn't wait to hear what he would say to our dog!  He gathered Kona close to him and patted her belly as he told her of her origins. 
She was unimpressed.
Later that night I was lying in bed with Kona when Willie came in.
"There's my girls," he said, lying on the bed and resting his head on Kona's belly.
"Kona," he said to her "did you know you're a sheep dog?
She responded by letting out a loud sigh.
"You're a little herder," he continued "and you like the cold.  That's why you always wear this fur coat."
He grabbed a handful of her loose fur and held it up for her to see.
She opened her eyes just enough to inform us that she was too busy sleeping to entertain our conversation.
He layed back on her belly and rested his hand on my leg.
"Merry Christmas Baby." He said, smiling at me.
"Merry Christmas!" I said and took a picture with my heart.
We were so spoiled for Christmas and I feel overwhelming blessed. I made Willie a book of messages and pictures from his friends and family to take with us to the hospital and he made me a book of pictures from our life together so far.

Christmas and Camo
 

Great minds think alike!
I was shocked when I opened my last gift from him to find a Kindle Fire HD.  It was totally unexpected.  I hadn't asked for it and didn't know I wanted one, but after using it for a day now I have fallen deeply and totally in love with it.
It was the best Christmas ever and the most meaningful one I've ever celebrated.  It was wonderful this year to reflect on the meaning of the season and feel the personal impact that the birth of our Savior has in our lives.  That is truly the BEST gift ever and one that I am deeply grateful for.
We came back to Stanford yesterday for lab work and to meet with the transplant doctor.  Willie's liver numbers have been a concern for the past month as they have been elevated.  We had been warned that if they had not decreased enough, they would have to do a liver biopsy to rule out any serious liver damage.  The thought of a liver biopsy gave us both a lot of anxiety so we became vigilant with his diet and supplements for the past two weeks to hopefully drop those numbers.
The anxiety in the dr.s office was tangible as we waited for the results from his blood work.
A man entered the room wearing jeans and a black, long sleeved tee shirt.
"Are you Mr. Beavers?" he asked, extending his hand as Willie nodded his head.
"I'm Dr. Lowsky," she said, smiling "I am filling in for Dr. Laport today."
He pulled up a stool and sat down.  He was in his late 40's with short brown hair and an athletic build that made me think that the decor of his office features pictures of himself standing on various mountains he has climbed.
He crossed his legs, revealing a pair of brown sketchers and leaned toward us
"Your labs look good, but your liver is still inflamed so we're going to go ahead with the biopsy."
Willie and I both gasped.  We had convinced ourselves we could pull those numbers down ourselves.
"What is his ALT number today?" I asked
"It's better, but not low enough," the Dr. replied "He dropped from 290 to 210, which is significant, but normal levels are below 60 so we need to make sure that isn't something else going on."
He explained that the CT showed fat deposits in Willie's liver which can account for poor function and can be a result of receiving multiple rounds of chemo.
"We will still go forward with the transplant, we just need to get a look at the liver tissue by doing the biopsy before we go into the transplant."
He stared sternly at Willie to silence any debate.
"Look buddy," he said, leaning forward on his stool "the transplant is going to be a grunt.  You're not going to eat, you're not going to drink, you are going to have blisters in all 26 feets of your digestive track and you will have blood oozing out your mouth.  You are going to be in a lot of pain, but you don't need to worry about any of that because we will put you on a pain pump and you'll have IV's and feeding tubes."
I sat there in shock.  He certainly wasn't sugar coating anything.  I looked over at Willie to gauge his reaction.  He was staring straight ahead, his eyes showing no emotion.
"We've heard all this," Willie said flatly "I've handled everything well so far so we're hoping things will go well."
I wanted to stand an applaud my husband for his optimism, but the Dr quickly squashed it.
"Even in the most mild of cases, the patients still get oozing sores."
This time he stared sternly at both of us to see if we would challenge him.
I wanted to tell him that we have talked with several people who have gotten transplants and haven't gotten the mouth sores.  We have been warned for months about the mucositis that can occur.  The radiation kills all the rapidly dividing cells in the body which means all the mucosal lining in the mouth and digestive track is destroyed.   This can result in painful mouth sores and digestive distress.  Some people become so inflamed that they can't even swallow for weeks.  We have heard all the gruesome details and prefer to remain optimistic that it will not be too awful for Willie. 
Your prayers for smooth sailing will help!
"You're going to be fine," he said, lightening the mood "You'll get the transplant and be cured.  Two years from now this will just be a part of your story."
He leaned back and observed us both.
"Do you have any kids?"
"Not yet," Willie replied "they're frozen right now."
This has become our programmed response since Willie got cancer.  It makes me smile every time I hear it.
The Dr looked confused and concerned "You have them fro.....OHHHHH!" He threw his head back and laughed as he realized what Willie had said.
"That's clever, I've never heard that before." 
He looked at us differently this time, with a heighten level of respect for thinking of such a clever line.
"You're going to have a bright future, you'll kick this cancer and have yourself some frozen babies."
We all laughed as she stood and shook our hands, although I think we'll thaw the babies first!
"Well he was certainly blunt." I said, as soon as the door closed behind the Dr.
"I liked him." Willie said.
I was just about to ask him why when the door opened and the transplant nurse walked in.
"What did you think of Dr. Lowsky?" she asked, after we exchanged formalities.
"He doesn't sugar coat anything!" I said.
She smiled "No he doesn't.  Did he say that transplant was going to be a grunt?  He's famous for using that term."
She laughed as we confirmed that he had indeed used his catch phrase.

Waiting with Will's wedding ring...again.
This time with the Kindle though!

The nurse gave us instructions for the biopsy and we left the cancer clinic.  We spent the night and reported bright and early this morning to the outpatient surgery center.  The surgeon met with us to explain the procedure.  He would give Willie some light anasthesia then insert a line in the vein in his neck.  He would feed that line down to the Liver and clip off a few samples.  It sounded gruesome, at best, but a pretty simple procedure.
"How does this compare to a bone marrow biopsy?" Willie asked the surgeon
"Have you had a bone marrow biopsy before?" He asked Willie, raising his eyebrows in question.
"Only about 6 of them." Willie said casually.
The surgeon laughed and slapped Willie on the shoulder "This is going to be cake then.  If you've done that then this will be nothing!"
I liked him.  He told us that his cousin received a bone marrow transplant 4 years ago from the same dr. Willie has. 
"I'm a huge fan of Dr. Laport," he said as he was leaving "my cousin is doing fantastic and you will do the same.  You're in good hands."
There seemed to be a running theme this trip of people assuring us things will be fine.  We already feel that way, but it's nice to be validated.
The liver biopsy went well.  He was done in 30 minutes and wheeled back to the staging room.  He was groggy from the anaesthetic, but said it had been fine and he hadn't felt anything.  We will have results from the biopsy hopefully by tomorrow, but it seems as though there is nothing that could come up to delay the transplant.
(Knock on wood!)
As we drove home it hit me that we will be leaving in 2.5 short days.  A mild panic ensued as I thought of all the things I need to do.  I realized that I have been able to complete most of the things on my list during this time the transplant has been delayed. 
What a blessing that turned out to be!
We are so happy to have had this time to spend at home with our family and friends before going back into the fire.  We are grateful to all of you who have kept us in your thoughts and prayers and feel so blessed by the outpouring of love we have received.  These next few month will probably be the most challenging we will ever face, but we are confident that we will come out of it with better health, stronger faith, and be better looking!
Happy New Year to all!  See you next year!

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...

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!

A Perfect Match!!!

We're back at Stanford for another round of chemo.  I'm writing this from the infusion center where Willie is currently getting treatment.  
Last Monday I got a phone call from Stephanie who is the nurse at the bone marrow transplant center.
"So I hear you got the good news!" she said in a cheery voice.
"Yeah," I replied "Dr. Medieros told us about the 3 possible matches."
"Is that all he told you?" she asked and I confirmed that he didn't give us much more information than that.
"Well then he didn't tell you the really good news." she paused for a moment as if she were waiting for me to guess.
"We found two perfect matches and the third is probably perfect, we just have to do more testing to see!"
I gasped.
The line was silent.
"That's....GREAT!" I replied, my voice revealing the shock I was feeling. She laughed on the other end of the line then it grew quiet again.
My mind was racing and I was trying to form a complete thought to carry on the conversation, but nothing was coming together.
"What happens next?" I finally said.
"Now we prepare the donor for transplant.  We like having more than one donor because they have to pass a physical and if they are sick in the slightest way or unable to donate then they are out.  With three possibles, if one fails we have two more!"
I liked her reasoning.  It seemed like a no fail plain in which one of them is bound to work.
"I do have to warn you though," she said, her tone lowering to match the subject "we have seen in the past that it is hard to get people to commit to donating around the holidays and we are asking this person to donate just before Thanksgiving.  That may be a for a match to drop out.  We'll hope that won't happen, but I'm just warning you it has happened before."
"Ok then," I said "We'll just hope the donor sees the holiday time off as a good time to donate!"
She agreed and encouraged the optimism.  She explained that they had created a schedule for the transplant and we should plan on coming down to Stanford the second week of November.  Everything felt like it was happening so fast and I had a million questions, but she assured me that we would be meeting in person many times before the transplant so we could take our time and think about it.
I thanked her and hung up.
Then I hyperventilated.
It felt like everything was happening so quickly.  I was reminded of riding on the merry-go-round when I was a child.  My siblings would push me around and around as I would scream for them to stop.  I hate spinning in circles; I hate anything that makes me feel like I've lost control.  This is the ultimate merry-go-round ride that we're on.  I wish it would stop!
I couldn't wait to tell Willie about his matches.  I was shocked at my response.  All the stress I had been feeling from the previous weekend had fled and I was now excited about this new beginning. 
"Guess what baby!" I shouted into the phone.
"Huh?" he grunted back.
He was busy painting the back steps and was obviously concentrating.
"I just got a phone call from the hospital and you have two perfect matches!"
He said nothing.
The silence was uncomfortable.
"Wow." He finally said as more of a statement than an exclamation.
"I know!" I replied.  "We go down the second week of November."
"Ok," he said flatly.
I felt disappointed as I hung up that he hadn't been as excited as I was.  But really, how could one be excited to be admitted into the hospital to receive radiation and chemotherapy so strong it could take the paint off a car?  I suppose the details are entirely un-exciting;  frightening even. 
The excitement lies in the possibility of a cure that the transplant presents.  We'll put in our time and stay here at Stanford until next February in hopes that after all is said and done we can go back to our normal lives without the constant threat of cancer.
Normal.
What is that?
Last night we went to a Giants game.  We usually go to at least one game each season and haven't had a chance yet this year.  We knew this would be our last opportunity to go when his counts were good and the Giants were in town so we bought tickets and crossed our fingers he would be feeling good enough to go.  And he felt great!
We donned our black and orange attire and Willie wore his SF Giants jacket that gets far too little wear.  We arrived at the park early and walked out to the field level to watch the opposing team warm up with batting practice.  We were in the far outfield and I was surprised by how many balls were flying out toward us.  Each time the outfielder caught a ball that was near the wall he would turn around and throw it into the small group of people gathered around.  He never threw one to us.  We were bummed.
We had awesome seats in the outfield where we could see everything.  It was foggy and cold and I snuggled up close to Willie.  It was a the perfect date.
When I was little I was obsessed with a movie called "Go Toward the Light."  It was a sappy tv network movie that was about a young boy who got AIDS from a blood transfusion.  His Mom fought for him to have a normal life against the stigma of the disease.  He was dying though, and his Mom prepared him for this by encouraging him to "go toward the light" when the time came.  It's not a film a small child should have enjoyed, but I was totally obsessed with it.  My favorite scene was when the boy was getting sicker and wanted to remember an event, I think it was a birthday party.  His Mom told him to take a picture with his heart so he could always keep it with him.
I've never forgotten that concept. 
Last night there was a moment when I looked over at Willie and remembered that movie.  The overhead lights captured his features perfectly as he concentrated on the game.  There was a look of complete contentedness on his face as he studied the field and commented to the players under his breath.  I leaned away from him to take in the whole scene and took a picture with my heart.  These are the moments I never want to forget.
Not that I'm losing him.  In no way do I feel like he's going toward any light any time soon, but Cancer has taught me to savor everyday moments.  I hope each of you can do the same without needing a diagnosis.  Look at your loved ones tonight and take a picture with your heart.  It will be a much better quality picture than any iPhone could take and will last much longer. 
We got more news tonight when we got to the center.  Stephanie, the nurse who I talked to on the phone last week, came in to meet with us while Willie was getting chemo.  We weren't expecting her and were surprised to see her.
She got straight to business.
"They donor has agreed to donate the day before Thanksgiving so we are a go!"
She has a way of dumping news without any preface.
"You'll be getting your transplant on Thanksgiving day, which is....." she searched for a word "Exciting!"
"Wow!" we replied.
WOW!
She handed us the revised schedule which now shows him getting the transplant on Thanksgiving day. What a perfect day for a transplant!
"Can we know anything about the donor?" Willie asked.
She paused a moment then said "I can tell you she's female.  I can also tell you her age and if she lives in the country, but I don't have that info with me right now.  Any other information will have to go through the transplant coordinator and they don't usually give you that until a year after transplant."
.....!
We asked some questions about housing and living arrangements and she directed us to our social worker.  She was kind enough to sit and talk with us for about 20 minutes, but in the end she referred all of our questions to the transplant doctor who we will be meeting with soon.  Our biggest concern is with the radiation Willie has to receive.  We are nervous about the long term effects of the treatments and want more info before we move ahead.
I felt like I had MORE questions after talking with her and I was an emotional mess by the time she left.  There are so many unknowns with this transplant and the risks are HUGE. It's the not-knowing gets me worked up.  I know that everything is going to be fine with Willie and I have complete faith that we will come out of this on top.  It's not knowing what it will take to get there that scares me. 
But that's not faith.
That's fear.
For now we move forward one step at a time as I keep reminding myself that I don't need all the answers RIGHT NOW.  We are so grateful to the mystery female who is giving us the greatest gift of all time this Thanksgiving. 
THANK YOU MYSTERY LADY!!!!
I know what we'll be thankful for this Thanksgiving and every year to come!

We Have a Match...(maybe!)

We went back to Stanford on Friday.  It was our usual check in with the doctor after another round of chemo.  The meeting is always the same; they ask how the chemo went, we report on the events of the previous three weeks, they look at his blood counts then tell us he needs to start the next round of chemo the following Monday. 
We always protest and tell them that we need more then three days notice in order to get our businesses taken care of and arrange housing for the week we have to stay there.  I am always amazed how this seems to be a novel idea to the docs.  As if taking care of living arrangements is a trivial thing.  At this point our visits always start to feel like we are negotiating to buy a car.  The doctor will tell us that the protocol advises that the chemo cycles occur every 4 weeks and pushing it back a week is not advised.  We will plead our case and explain that we need to take care of our home affairs before we can up and leave for a week.  There will be moments of silence and stern looks then the fellow doctor will leave to consult with the attending physician to see if they cam work out a deal. 
We'll sit in the cold examination room alone for a few moments as we consider what we can do to make it possible to return for chemo in three days.  We'll toss around some ideas on how we could possibly make it work and will just be warming up to the idea of starting another round of chemo when the attending doctor will return and accept our offer to wait a week.
This visit was no different.  We met with Brian first who is the fellow doctor that we really like.  He looked tired this time and his hair was combed in a way that made his thinning bald spot obvious.  I have no problem with bald spots and have grown rather fond of bald heads along this journey, but apparently a bald spot on a cancer doctor is something to be hidden.  Half of his hair was combed to the right and the front section was combed back.  It was most creative and gave his hair the look of a lattice fence. 
"You look good!" he said to Willie as he shook both of our hands.
He asked questions about the last round of chemo and Willie caught him up on the fevers.  We were lucky that we never had to go to the hospital this round and Brian was quick to point that out. 
"Your counts are good so we'll most likely want to start your next round on Monday." He said, as he stood to leave the room.
"We were hoping to have a week off to get things arranged for housing." Willie said, as the negotiating began.
"We really like to keep the rounds closer to 4 week intervals" Brain said, as per his usual dialogue "But I'll see what doctor Medeiros thinks."
He left the room and we sat in silence for a few moments.
"Isn't it silly how we go through this EVERY time!" I said to Willie.
Before he could reply the door opened and Dr. Medeiros entered in his usual dramatic way.  He was looking as suave as ever wearing a perfectly pressed gray shirt and carefully creased brown pants.
"They should make a movie of this guy!" he said, pointing to Willie.
We laughed and shook hands, not quite sure where he was going with that. 
"We were just watching a video on youtube of a guy who took a picture of himself everyday for 5 years and made a movie out of it.  We were talking about how boring the movie would be for guys like me or Brian who have no facial hair and never change our look, but you always look different!" He motioned to Willie's new lamb chop side burns as he said this.
Willie ran his hand along his cheeks and laughed.  He later said he was laughing more at the thought that the best doctors at Stanford spend their time watching videos of guys aging on youtube.  Indeed, that is an interesting way to spend a break between patients.
"We want to start your chemo on Monday, but Brian says you need to get a hotel arranged so we are going to give you a week off an start you again on the 24th."
We smiled in sweet victory.  We had won again.
"Have you heard anything from the Transplant center?" he asked, looking at Willie, then me.
We both shook our heads as I admitted that I haven't had time to call them.
"Well they found 41 possible matches for you and have narrowed it down to 3.  They pulled more lab work on you last time you were here which means they are doing final testing on the 3.  If everything goes well, one of those three should be a perfect match and this will be your last round of chemo then we'll go straight to transplant in 6 weeks."
The room was silent.  We were in shock.  This was the moment we had been waiting for since the first day he had been diagnosed, but I never imagined it would happen like this. 
In my vision we would be informed in a manner that paralleled that of a Publisher's Clearing House winner.  Someone from the bone marrow bank would arrive at our door with balloons and a large sign announcing they had found a perfect match for Willie.  We would hug each other tightly as we jumped up and down in excitement.  Confetti would fall from an unknown place and we would share a new year's eve-like kiss. 
It was so magical in my mind.
There was no magic in that examination room.
Willie heaved a sigh of relief next to me and I realized I was holding my breath.  The anxiety that was rising inside of me was almost tangible.  I could feel it bubbling up from deep within, throwing out question after question and shouting out things that need to be done in 6 short weeks.  I felt entirely unprepared.
"Wow!" I finally said.
I can't recall anything else that happened after that.  I just asked Willie and he said he doesn't know either.  All I know is that announcement opened up a well of anxiety inside of me that I didn't know was there and I have yet to begin silencing it.  I was surprised at how my and Willie's reactions were polar opposites.  He was so relieved by the news and I have yet to stop biting my nails.
In many ways I feel like we are starting all over again.  We are leaving our comfort zone of chemo treatments and entering a world of BIGGER chemo, radiation treatment and the possibility of death from graft versus host disease.
If that's not enough to stress over, we also have to figure out where we are going to stay and how in the world we are going to manage our lives here at home while we stay at Stanford for 3 MONTHS!  We don't even know were we are going to stay!  I know most of this stress is elicited by the fact that we got this news on a Friday and I have not been able to make any phone calls to pursue answers to the questions.  I'm sure things will be much better after we start putting things in place.
Despite all the anxiety, we are excited.  After all, a bone marrow transplant is the only known cure for Leukemia.  After that transplant we can go back to a normal life and never think about chemo again.  That is very exciting!
For me the excitement is buried behind tears and wild eyes, but this is what we have been praying for and we are most grateful.  This entire journey has been a test of patience and waiting on the Lord.  My entire life for that matter has been a lesson in waiting in faith.  That's probably why this announcement of a probable match in such a short span of time is something I'm not equipped to handle.  For the first time ever I feel like I'm the one asking the Lord to wait!
Who am I to choose the timing?!
We are so grateful for all the prayers, thoughts, donations and words of kindness we have received.  This is what strengthens us and makes our load seem light.  I can't say there has even been a moment in this whirlwind journey that I have felt this load was too much to carry.  Even now in my utter anxiety state, I do not feel that it is too much to handle.  We have been so blessed.
So very very blessed.
We are most grateful to the stranger who will donate their bone marrow for Willie to live.  It is the ultimate gift one can give.  If you haven't signed up for the bone marrow registry yet you can go to www.bethematch.org.  It takes about 6 weeks after doing the cheek swab to be entered into the bank.  I just got an email today saying that I am an official member of the bank.  The email said that 1 out of ever 546 members on the 11 million member strong  bank will get called on to donate marrow.  Some people will never be called to donate.  I hope with everything in me to be a match for someone so I can pay forward what someone else is doing for us. 

Please keep praying with us that one of the 3 will be a perfect match!  We'll keep you posted!