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!

Our Anniversary!

Today is our 3rd wedding anniversary.  What a wild ride these past three years have been!  The past 4 months specifically have been the wildest.  If our life were compared to a roller coaster I think we are suspended upside down somewhere in the middle of the first loop.
I have never been one for roller coasters.  I went on my first coaster at the late age of 10.  When all the other kids were standing on tippy toes to reach the height limit, I was shrugging to fit below it.  It was impossible to hide my height though, seeing as how I have been 5'10" since Kindergarten...!  When I was 10 years old, I was the only child in my class who had not been on the old rickety roller coaster at our local amusement park.  The ride was simply called the "White Roller Coaster" and was comprised of slates of wood that must have been taken from pioneer wagons that crossed the plains.  You could see rusty railroad spikes driven into the wood from yards away and each time a car of people passed by, the track would groan and shake back and forth.  I had no intention of ever going on it until the day the hazing from my friends became so bad that my Mom agreed to go with me.
I'll never forget the fear that filled my soul as the car was pulled slowly up the track.  The wood groaned and creaked and I could feel the track shifting below us.  As we reached the top of the dip all noise stopped and we sat for a moment, suspended in mid air.
"Put your hands up!" My Mom instructed, and I turned to see her lift her arms high in the air, a glimmer of mischief in her eyes.
I released my death grip on the bar and started to raise my arms when we began to fall.  My hands instantly shot back to the bar and I held on for dear life during the next 45 seconds of pure torture.  When the ride ended I could hardly breath.  Mom had to pry my death grip from the bar and escort me out of the ride on legs that functioned like a bowl of jello.  I nearly fell down once we exited the gate and had to sit with my head in my hands for a good 20 minutes before I could pull myself together.
This is how I react to roller coasters.
My new life is a roller coaster.
I have ridden a handful of roller coasters since that day and handle them marginally better.  I only have to sit for 10 minutes to re-group now!
Willie loves roller coasters.  I have seen him ride the kind with loop after loop and walk off the ride un-phased and ready to ride again.  I suppose that is what helps him handle our current roller coaster life so well!
It was mid afternoon, three years ago, that I stood across from this man and committed to ride any roller coaster that life has to offer us.  At the risk of being cliche, I thought I loved him then and knew what I was getting into, but I had no idea.  I had no idea what it truly meant to love.  I didn't understand that love means sacrifice. 
Compromise.
Patience.
Concern.
Complete and utter selflessness.
And the list goes on and on.  What I didn't understand is that love is a living, changing thing that must be nourished.  It is challenged by circumstance and choices.  It is always present, but rarely thought of.
Willie and I dated for 3 years before we got married.  We had our times when we were in love and other times when we fell out of it.  We had our break ups and make ups like every other couple.  During one break up I was determined to move on and agreed to be set up with a guy to go out with a group of friends.  The moment I met him, I knew it was not going to work.  He was tall and skinny with pale skin and a carefully combed part that was slicked down by either grease or hairspray.  He looked me up and down after we shook hands and asked
"How old are you?"
"23" I replied.
He winced.
23 is a tender age in Utah.  Back when I was in the dating field, most girls were married by the age of 21.  When you pass that age you enter the category of girls who must have some sort of defect because they weren't snatched up before then.  I was used to adverse responses to my age or fielding questions as to why I wasn't married.  Why I hadn't found someone yet.  What was wrong with me!
It is a funny culture, but it is the culture I grew up in and I have no ill feelings toward it. 
"You're just a baby!" he responded.
I was shocked!  This was not a response I had ever encountered.
"I'm 33." He said, leaning in close so no one would hear.  "I had a brain tumor a few years back that took me out of the dating game for a couple of years and I'm just getting back out there.  You're too young for me, but I guess we can hang out tonight and I can teach you a thing or two."
His arrogance was disgusting, but I felt bad for him.  The brain tumor card won me over.
That was the longest date I've ever been on.  At one point we played a game where one couple hid within an area that spanned 6 city blocks and we had to find them.  It was dusk as we walked alone down the city streets, looking for the couple.
"I want to teach you about love." He suddenly said.
"Oh.....Ok." I replied, not really sure what had sparked the discussion.
"I have been in love before and it didn't work out.  I doubt you've ever been in love before, you're too young." He glanced at me from the corner of his eye before he continued.
"What I learned is that you can never love the person the same amount they love you back.  It's like you are each driving in your own car and there is a rubber band between the cars.  Sometimes one car will be ahead of the other one because one person loves the other one more.  The cars never drive side by side.  The rubber band just keeps getting stretched back and forth when each persons feeling change."
"That's.....interesting" I struggled to find a word to describe such an absurd thought.  It was so different from anything I had ever heard about love and way off from the feelings I had for Willie.  It made me question whether I really was in love.  If love was what he was describing then perhaps I really had never experienced it.
I think about his theory often.  I understand now that he had never experienced a healthy love if that is how he viewed it.  I can agree that sometimes the degree you like you partner can stretch back and forth like a rubber band.  There have been times when I have tripped over Willie's clothes that he left by the shower after 100 times of asking him to PLEASE pick them up when my rubber band of like was terribly stretched, but it is almost funny to think that I could love him less for that.
I have proven his theory wrong.  I really hope he found someone to teach him.
Today I am so grateful that I found unconditional love.  My life changed for the better the day I married Will and it changed again for the better the day he was diagnosed with Leukemia.  I have learned how to love without restriction.  How to live in every breath and savor the moments that I previously would have neglected.  With Will by my side we have been riding the roller coaster that life designed for us.  I am still scared to death, but he is teaching me to relax enough to put my hands in the air and enjoy the ride.
I still have a feeling I'll need a good time out to recover when we reach the end though!

Our anniversary celebration has been quiet.  Willie's blood counts are at the lowest point right now so he is not able to go anywhere.  He was feeling tired this morning so we spent day inside watching TV while I rubbed his feet.  That's all he wanted for our anniversary.  I just wanted to be together.  He went outside for a short time in the afternoon and came back drenched in sweat and pale as a ghost. My heart sank when I looked at him and I immediately flew into action getting him in bed and checking his temp.  He was running a tiny fever, 99.5.  We don't have to take him to the hospital until his temp passes 100.5. 
I spent the rest of the afternoon checking his temp every 20 minutes.  I watch the numbers as they climb on the screen and beg them to stop.  The highest he's gotten in 100 degrees flat.  I hate this limbo.  We don't want to have to go to hospital so we want his temp to stay down, but at the same time, I don't want to keep him home if he has an infection!  It's going to be a long night of temperature checking, but at this moment his is feeling better and watching the New York Giants play football at the same time the San Francisco Giants are playing baseball.  He is in sports heaven!

I will end with a poem by E.E. Cummings that I found the other day.  It was in a magazine that I read while waiting for one of Will's doctors appointments.  It brought me to tears as if he had written it about us.

 

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)

i fear no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

 

~e.e. cummings

 

Happy Anniversary to the better part of my heart.  Here's to many many MANY more!