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!

 

 

Grateful

Today my heart is bursting with gratitude.  We had an AMAZING day yesterday and had an overwhelming turn out at the fundraiser BBQ for Willie. 
Our day started early as we met at the park with a group of friends to start setting up for the event.  My sister in law, Tammy, has been the lead planner for this whole thing and she helped us set up according to her vision.  I have never seen Tammy put on any event that wasn't orchestrated to the smallest detail and even a BBQ in the park received her same attention to the small things, like making sure the plastic table clothes were perfectly centered on the tables!
I admit, I mocked her a bit, but she turned that park into a haven that border lined on wedding reception quality.  I don't have that gift of organizing events.  If I would have been in charge, I would have thrown some tables haphazardly around the park and called it good.  I doubt I would think to even wipe the tables off yet alone cover them, and everyone would most assuradly leave with a sliver.


Signing up for Be The Match

That is the difference between me and Tammy though, and I think she's got it right.  She had the tables lined up in perfect rows (which we moved to make sure they were perfect!) and covered in white table cloths.  A friend of ours brought the most beautiful flower arrangements that were placed in the center of the tables and complimented by strings of Ivy.  It was so beautiful and when we were done setting up I stood back and marveled at how it had come together.  I admire people who can envision the final product in their head before it happens. 
I'm better at using a mixing spoon and wearing an apron.  I think I'll stick to that.
The guys from the gym got the meat and rice going and we waited for people to show up.  The weather was perfect and the entire park was shaded as we were getting started.  Our friend Rob set up a speaker system and treated everyone to a fantastic mix of music that had a little something for everyone. 
People started trickling in around 1PM and by 2PM the line for food was winding around the park.  We had a lot of friends who had volunteered to help in any way we needed and I was amazed on how they just showed up and took over at the right moment.  We had a mix of family and friends making the food, taking tickets and dishing up plates.  It was like watching a well oiled machine function without the need of a director.
We couldn't believe how many people were coming.  It was awesome!  Around 2:45 the guys realized we were going to run out of meat so I was sent to the local grocery store to "get everything they've got!".  I got 20 more chickens and 6 tri tips which I rushed back to the park so they could get them cooking.  People kept coming and we just kept serving.  It wasn't stressful or overwhelming in the slightest way. 
It felt like Christmas dinner to me, but amplified to include the entire community.  Everyone wished us well and lifted our spirits with their expressions of love and concern.  Willie was feeling great and wandered around talking to people in between helping shuttle the meat from the barrels to the serving table. 
He got himself a fancy new Fedora hat that made him look suave and stylish.  I found myself watching him several times throughout the day and being overwhelmed with gratitude that he could be there with us.  There was a moment where I looked up just as he was sharing a laugh with one of his close friends.  The sun was dancing on his face and arms and he looked like he was glowing.  I felt frozen in time as I looked at my angel surrounded by an entire park of community angels.  It was an out of body experience as I processed the last 3 months of mayhem that had brought us to that moment. 
Is this really my life?
Has all that really happened to us?
It's difficult to comprehend.
But the ultimate blessing and gift from all of it is that we have learned how to love to the fullest.  We have seen the best sides of people brought out in support of our trial.  And most importantly, we have become better people.
Or at least I hope we have.
We are still a work in progress.  There is a children's church song that says "God gave us families to help us become what he wants us to be." I know that to be true because Willie is helping me become a better person every day and I am most grateful for our trials that allows us to change and to grow. 

The most exciting part of the BBQ was the representative from Be the Match who came to promote bone marrow donation.  She had a tent set up with information and kits to do the cheek swabs to donate.  I was excited to glance over at the tent from time to time and see different friends with giant q-tips shoved deep in their cheeks as they did the swab test to joined the registry. 
We talked with the rep at the end of the event and she said she had about 50 people sign up.
Awesome!
Simply Awesome!
We served until we had nothing left to offer and called it a day around 4:30PM.  We fed well over 300 people.  It was nothing short of a miracle that we pulled it off! 
It's uncommon for me to be at a loss for words, but I can't even think how to begin to say thank you.  I wasn't born in Willows, but I have come to feel like I belong here.  I have experienced so much warmth and love from this community that I now consider it my own.  It will be an honor to one day raise our children in this amazing place.

My cousin's lovely thumb at the Utah yard sale

My Mom was not going to be left out of our day of fundraising and organized a yard sale that took place yesterday in Utah.  She has been preparing for over a month and has enlisted the help of my entire Utah family for donations and organization.  They held a yard sale/ bake sale yesterday morning and had wild success.  She said there wasn't a single lull in shoppers the whole day and people were so eager to show their support in donation as well as in kind words and well wishes. 
I'm feeling doubly blessed to be from a supportive community and now be transplanted into one.  It is a testament to Will's strong character to see how quickly people come to his aid.  He would do the same for anyone else in need and we will forever be paying it forward.
Thank you to everyone who helped us either in Willows or Utah.   We are humbled by the love and support we have received and offer our sincere gratitude to anyone who was involved. 

My Mom said it best last night when she said it is as if the windows of heaven have opened up and poured blessing on us.
Indeed, we are experiencing a glimpse of heaven and we are most grateful!

The Tooth Trashtrophe

We're on the last day of chemo and this week has gone great.  The big news of the day is that the infusion center got fancy new chairs!  These new pleather chairs have remotes and Willie was quick to test it out.  He moved it up, down, back and forth.  We laughed as he tried the recline function and the chair just kept going back.  When it finally stopped reclining his feet were far above his head.  Our friends in the neighboring chair also noticed the ridiculous angle of his chair and laughed with us.  It was a good start to our last day here.
He has avoided any infection this week and overall has been feeling pretty good. 
I am the one that has fallen apart this round.  I have a tooth that I had a root canal in about 6 years ago and for the past couple of years it has progressively turned black.  When I went to the dentist who performed the root canal in January of this year he said the tooth would have to come out at some point so I've had that in the back of my mind.  For several months I have constantly been tasting bacteria from that tooth and just last week I felt the sealing on the crown is wearing thin. 
This week I reached my limit with the tooth and wanted it out.  NOW!  I called around the area in hopes of finding a holistic dentist who would follow the directions of my dentist in Utah.  We were lucky to find one in the next city over and he just happened to have a cancellation on Thursday!
He was a young dentist with deep brown eyes and impressively long eyelashes that brushed the top of the blue face mask he was wearing.  We talked about options with the tooth and he tried to persuade me to keep the tooth and have it cleaned out.  He doesn't do that type of cleaning, however; so he would have to send me to Santa Rosa.  We tossed options back and forth and I finally told him that this tooth has been one issue after another for over a decade and I just want it gone.
"I agree with your decision" he said with a soft Spanish accent "I just have to make sure you understand the options because when the tooth is gone, it is gone!"
I hate it when people put words to thoughts I already have in my head.  I know that once the tooth is out, it cant be put back; but something about him saying it out loud made me instantly regret and re-think my decision.  I stood my ground though and told him to proceed.
My only experience with tooth removal was when I had my wisdom teeth pulled and I was asleep for that.  I healed up easily from that event and because of that, assumed the all tooth removal episodes are easy. 
Boy was I wrong!
He numbed me up and went in with a pick to loosen the root.  There was scraping and pulling and cracking noises that I hope I soon forget.  He then grabbed a large pair of pliers and started yanking on the tooth.  I felt like he was going to rip my jaw right off the hinges, but the tooth didn't budge. After a few minutes of this push and pull he announced he was going to need to section the tooth and began drilling.
It was at this moment that I wanted to take back my decision to have the tooth pulled.  Suddenly the option of having the tooth gutted and filled seemed like a better choice.  I wanted to raise my hands in the air and shout
"Just kidding, I decided I want to keep the tooth and the rampant infection."
Even a constant infection sounded better to me than the shrill of the drill bit tearing my tooth apart.   The crown popped off the tooth and the whole room was filled with the smell of rotting bacteria.  It was disgusting at best, and mildly embarrassing that I have been carrying that stench around.
"You're right," he said, noting the smell in the air "this tooth is badly infected."
I didn't know he had doubted there was an infection!
He removed one section easily after drilling, but the last section was not budging.  He had to stand several times to find leverage with the pliers.  After about 5 minutes of constant movement with the tooth I was about to freak out.
"It's just holding on by thread," he said.
The statement brought to mind images from my childhood when a loose tooth would literally be hanging by a thread and I would stare at it with great fascination, wondering if I should pull it.  I doubt I would have looked at this tooth with any sort of fascination.
With one final authoritative pull he removed the tooth and I watched with a mixture of horror and interest as he set in on the tray.
"That was quite the infection," he said, pointing to different areas on the tooth.  "You can see the old root canal here," he pointed "that's probably where the infection got in."
I took a picture.
Sorry if it grosses anyone out, it fascinates me.
I know I am going to feel light years better with this trash dump tooth out of my head. 
The gaping hole left by the tooth has given me nothing but pain so far.  I had expected it to be painless like my wisdom teeth sites, but I have now learned that it is much less painful to have a tooth removed with the gums stitched up than to have it ripped out with a gaping hole. 
I am left with a swollen cheek on the tooth removal side and a puffy eye on the opposite side.
So attractive....
It's funny to think how painful this has been for me when Willie had 4 teeth ripped out of his head a few months ago and had no pain or side effects whatsoever. 
And he has cancer!
I must be a cry baby.  But I'm looking forward to better health without that infected tooth!
After the tooth removal we took a 30 minute drive over to Half Moon Bay on the coast.  It is a quaint little down with a cute downtown full of artistic shops and restaurants.  We had fun window shopping and enjoing the 70 degree weather.  When dinner time came we debated about where to eat.  All I wanted was mashed potatoes.  We were back at the hotel by that point and had any restaurant in Palo Alto as an option.  The hotel is right next to a Boston Market which Willie has not wanted to eat at, but as it got later we decided to just eat there.
We took a 2 minute stroll to the restuarant and had a dinner.  Willie had a lovley Thanksgiving dinner with all the trimmings and I had the most delicious mashed potatoes in the world.  We haven't heard very good reviews on Boston Market, but I thought it was great.  Willie wasn't as impressed. 
"How as your dinner?" I asked as we walked back to the hotel.
"It was a Trashtrophe!" He said.
"A Trashtrophe?" I asked while laughing "What is that?"
He laughed at himself as he realized what he had said.
"I mixed together tragedy and catastrophe." He explained.
"With a little bit of trash." I added and he agreed.
We laughed.
That will be added to the book of Willie-ism.

We are so excited about the fundraiser BBQ tomorrow.  Willie is feeling great today and is planning on coming.  We keep selling out of tickets so we have printed more and sold out again!  It will be so much fun to see all of our friends and enjoy visiting with the community. 
There are no words powerful enough to relay our gratitude for everyone who has made this event possible and to all those who will be attending.  Thank you all in advance!

For everyone who hasn't gotten their tickets yet, they are still available at the Health Habit all day today and we will have them at the park tomorrow.  The event starts at 1PM at Jensen Park.
We are most excited that Be The Match will be there to sign people up for the bone marrow registry.  The chances of someone in the community being a bone marrow match for Willie are slim, but this is a chance to help other people like us who are hoping and praying for a match.  To me, that is the most exciting part about the BBQ tomorrow.  Not only is the community giving support and hope to us, but they will be passing that on to the world by joining the bone marrow registry.
Is there anything more fantastic?!
I don't think so!
 See you all tomorrow!

Chemo: Round 3

We're back at Stanford.  This place is starting to feel too familiar and I'm not sure if I like it.  It feels a bit like coming home every time we come back.  I think I'm relating the feeling of comfort I get from knowing we are in the best hands to the feeling of home.  The two shouldn't be confused, but if we have to have a home away from home, I choose here.
We are staying in the same hotel we stayed at last time, but this time we have got a room upgrade!  We slept well on our king sized bed in a room that is tucked in the back corner of the complex.  It feels a little cave like since our windows are covered by an overhang and let in no light, but it's nice and cool and a welcome change from the 100 degree weather at home.
Last Friday Willie had his PICC line re-interested.  We were happy to have the same nurse who inserted his first line.  She is the adorable Korean nurse who hums to herself while she goes about her work.  This time she was more talkative and told us all about her kids while she poked and prodded Willie's vein.  She decided to put the PICC line in his right arm this time in order to give his left arm a break.  The line went in in easily and I watched with a mixture of shock and interest as she pushed a two food long tube up Willie's vein. 
Willie had a sonogram unit on his chest that alerted her when the PICC was in the right place and she watched the screen with an eagle eye.  I was standing across from her, but could see the screen in the mirror that was behind her.  She hummed a low, sad-sounding tune, as she fed the line up Will's arm, her eyes never leaving the screen.  The music stopped when an image began to appear in on the screen.  It was the tip of the PICC line and it had to be positioned just so.  She fiddled with her end of the line and the image moved fractionally on the screen.  She was deep in concentration as if something was amiss. The silence was nerve wracking.  I needed her humming to tell me everything was ok.
The image on the screen moved again and a loud beeping came from the machine.
I thought it must be the warning bell that she had punctured his heart and it had alerted an emergency squad to come and save my husband.
"Got it!" she said, over the beeping, a smile dancing in her eyes that peeked out from below her bright yellow mask.
Apparently the beeping was a good thing. 
Why in the world would they make such an alarming noise be the signal of a good thing?!
Choon cleaned up and said she would send in the ladies to get a chest x-ray before she cleaned up.
"They will check to see if I did it right," she said in her endearing Korean accent "but I already know I did!  I always do it right!"
I love her confidence. 
The x-ray was perfect so she finished up by putting the sticky plastic dressing over the PICC site and sent us on our way.
We got back to Willows in the evening on Friday and went directly to our shop.  There is an annual car and bike show in our town and Friday night was the beginning of the show.  I was excited to watch the classic cars and bikes cruise by our shop and we got a lot of good business from people seeking ice cream and frozen yogurt in the 98 degree weather. 
The next morning, Willie got up and shined his bike up.  He has put his motorcycle in the show for the past several years and he wasn't sure if he was going to be able to participate in this one.  I watched from the kitchen window and nearly choked up as I watched his fresh white bandaged arm move back and forth over the shiny red paint.  His balding head and PICC line bandage made the scene look starkly different from the one just last year, but his obsessive attention to detail still remains.  I smiled as he sprayed and shined and leaned in close to make sure it was clean. I smiled as I watched him, and in that moment I was overcome with gratitude that he was feeling good enough to do that.  What a simply silly blessing that is!
We went down to the park where he parked his bike among the other shiny motorcycles then we set up a booth to sell more ice cream.  We stayed busy the whole time and had a fantastic afternoon enjoying the show and visiting with friends.  It is days like these that recharge our batteries.  I'm so happy we were able to go!
We woke up at 3AM Monday morning and drove back to Stanford.  I keep thinking that there has got to be a time when there is no traffic in the bay area, but we have yet to see it.  Even at 4:30 AM we were in heavy traffic!
He gets chemo from 7AM to 10AM and again from 5PM to 8PM on Monday, Wednesday and Friday.  Yesterday's treatments went well and we are looking forward to uneventful, easy week.  We are crossing our fingers and praying that he will avoid any infection during this week of chemo or in the coming weeks when his counts drop.  If everything goes well this week, he will be able to go to the fundraiser BBQ that will be held this Saturday at Jensen Park.
If you live locally and haven't got your tickets yet, go down the Health Habit and get some!  You can also buy tickets the day of the event.  It starts at 1PM and goes until we run out of food, so come early and join in the fun!

Say When

Home again!  This is what we came home to.

When I about 4 years old I used to get babysat by our neighbor named Wen.  She had kids the same age as me and my siblings and we always had a blast at their house.  One afternoon we sat down for lunch and she appeared with a gallon of milk.
"Say When." she told me as she poured the milk into the cup.
I came from a family where the amount of liquid poured into a cup was never dictated by the child.  Mom had a habit of filling our glasses half full in order to cut down on clean up if we spilled it.  She never let us have a full glass of anything.  She carried this habit on well into our teen years and we started calling a glass that was half full a "Mom full."  It was common to hear statements like
"Can you get me a glass of juice, and don't make it Mom full!"
Thus, in my 4 year old state, this concept of telling an adult when to stop pouring was far beyond me.  I watched in awe as Wen poured the milk into my cup until it was nearly overflowing.  It was the fullest glass I had ever seen. 
Wen stopped pouring and looked at me.
"You didn't say when!" she said.
"Why should I say Wen?" I asked, positively perplexed at why I would call out her name when she poured my milk.
"You say When, when the cup is as full as you want it."
A light bulb flicked on in my head.  What I heard was that you said that name of the person who was giving you something when you had enough of that item.  I had mixed up a common statement of saying "When" with my neighbor's first name!
I remember going home that night and watching as my Mom filled my glass with water.
"Mom!  Mom!" I shouted, as the glass reached the half full mark where she would have stopped pouring anyway.
"What honey?" she asked me, clearly perplexed at why I was shouting her name.
"I was telling you it was full," I explained, as if she were stupid "Wen taught me how to do that today!  She said to say Wen when it was full, but your name is Mom!"
I remember her laughing and feeling so confused. 
What a fabulous memory!  That was brought to mind yesterday when I heard a song entitled "Say When."  If we follow the theory in my childhood mind of saying the name of a the person when you have reached the limit, then I nearly shouted "Cancer" this week. 
It was a challenging week indeed.
Willie was feeling much better last Sunday and we had every intention of leaving the hospital that day.  Some of the doctors and nurses had lead us to believe that all he needed in order to go home was to be fever free for 12 hours.  By Sunday morning he had been clear for nearly 24 hours and we were ready to go.  He was starting to feel sick from the amount of antibiotics they were giving him and he wanted no more of it.  When the nurse came in that morning to give him another IV of antibiotics he told her he wouldn't take it until he talked to the doctor.
She was a cute little nurse of Asian decent and responded to Will's request as if he had threatened her personally.  She removed all of his IV bags and worked on getting the Dr to see as as soon as possible. 
The Dr. came in about an hour later.  She said she was happy with Will's stats and felt we could go home that day.  She was not the oncologist; however, and reminded us that she would have to defer to whatever Dr. Talebi decided. 
We were hopeful we would get out of there and waited for Talebi to show up.  He came in around noon and examined Willie.
"You look good," he reported, after listening to Will's lungs.
"But you are still in a fragile state" he continued "you have to realize that you could be dead in an hour."
It was a heavy thing to say.  His words hung in the air as we considered the reality of his statement.  I don't remember a doctor ever being this blunt with us. 
But we needed to hear it. 
"I can't let you out of this hospital until I'm certain the bacteria is gone." He continued "we will draw some blood today and see if any bacteria grows in it over the next 48 hours."
"That means we have to stay until Tuesday!" I said, defensively.
"If the cultures are clear, then yes, you can leave Tuesday." He didn't seemed phased by my outburst.  I suppose it is his job to keep Willie alive and not to accommodate our schedule.  For that, I am grateful.
He left the room and the silence that fell in his wake was too heavy.  His words kept playing over and over in my head like a broken record.  My husband could be dead in an hour. 
60 minutes.
We have become too casual with cancer.  It has become a part of our lives that we tolerate, but don't give much respect to anymore.  His words were a reminder that we are not in control.  Willie was really lucky to beat this last infection quickly, but there's no telling if he will be able to do that every time.  This round in the hospital introduced me to the speed at which infections can ravage a body with cancer.  It's not anything to toy with.
We waited out the next two days with little patience. 
On Tuesday morning the female doctor came in to report that his blood cultures were clear and we could go home.  That happened around 9 AM and we got out of there by 1PM.  By hospital standards, that was quick!
On Friday we went back to Stanford to see Dr. Medeiros.  We met with the Fellow MD first who we remembered seeing when Willie was staying at the hospital.  His name is Brian and he looks more like a guy who would come to install your cable than a doctor who will cure your cancer.  He has a relaxed way of talking that puts you at ease and makes you feel like you understand the complexities of cancer.
We caught him up on the events on the previous week and he took down some notes.  He wasn't surprised by the infections Willie had caught and said that it's inevitable to catch something while going through chemotherapy.  We asked him how we could have prevented it from happening or what we did wrong.
"Everyone is bound to get an infection at some point during chemo treatments," he explained "the last thing you need to do is blame yourself or try to pinpoint what caused the infection. It's just something that happens."
That was a relief to hear.  I had been feeling a lot of guilt about what Willie or I had done or not done to lead to his terrible infection.  Now we know it was bound to happen.
Brian took his notes and went to consult with Dr. Medeiros and returned about 20 minutes later with the dr.
He was looking suave as usual with a new silver earring in his left ear.  His hair looked darker and the coloring on his scalp suggested he had recently colored it.
"How are you my friend?" he said, as he extended his hand to Willie.
We shook hands with him and he sat back comfortably in the chair as if he were having a chat with some buddies.  I suddenly realized he has become our friend. 
Our arrogant, attractive, well dressed, too smart for his own good, best cancer doctor in the whole world-friend.
He was pleased at how well Will is doing considering the infection of last week.  He reported that they haven't heard anything about finding a match for the transplant so we will continue on with Chemo.  They wanted us to start the following Monday, but we immediately protested that.  There is no way we could get things in order with the shop and finding housing for our stay in just 3 days time.  They agreed to push the treatments back a week and we are now going back the week of the 20th for his next treatment.
"How can we avoid him getting an infection this next round?" I asked Medieros as our visit neared an end.
"You can't" he said bluntly "Unfortunately, these things happen. You just need to do what you did and get him to a hospital if that happens again."
That was the message he left us with.
Medeiros and Brian decided that Will's picc line should be removed in case there is any bacteria in it from his infection.  They sent us upstairs where a nurse removed the line.  It was a ridiculously easy process.  The nurse clipped the stitch that holds the picc line in and pulled the line out. 
I was in awe as I watched the line come out.  It just kept coming! 
Willie said he felt nothing, but he was shocked at how long the line was.  It was close to 2 feet long!
He is now picc line-less and gets to enjoy a week of freedom from the dangling line.  We go back to Stanford on Friday to have a new line placed then start the next round of Chemo the following Monday. 
Please keep the prayers and good thoughts coming for this next round of chemo.  We will certainly be more cautious and hope that he can walk through this round without any infections.  We are so grateful he was able to kick this last infection quickly.  That was a blessing.  We are also grateful that the Olympics have been keeping us distracted and occupied during these past three weeks.  It's as if they were timed to fit our schedule!
Happy weekend to all.  I hope our local friends are staying cool in this 113 degree weather and that the rest of you not in this kind of heat are appreciating anything cooler!

113 degrees in my car!  Yikes!

On the Mend!

Klebsiella: the nasty bacteria that caused this whole mess

We're still hanging out at Enloe.  Will's fever finally broke early Friday morning.  They had been pumping him full of every IV antibiotic they had available in hopes that something would kill the infection that they couldn't locate.  He had a CT scan late Thursday night to look for an abscess or anything that could be causing the infection.  On Friday morning we got our answer.
The dr. that works on the cancer floor came in around 10 AM. 
"We've found an infection!" she said, her eyes breathing an air of excitement.  I imagine she was smiling behind the mask, but her eyes told us she was relieved that the 3 day search for an infection had reached an end.
"You have a bacteria called Klebsiella in your blood," she paused and looked at us as if we were going respond like we knew what she was talking about.
We stared blankly back at her.
"It is a bacteria that usually found in urine and stool," she continued "but we think it is in your lungs.  The CT scan from last night showed that you have patchy pneumonia all over your lungs."
She explained that pneumonia is usually centralized, but with the patches all over his lungs it makes them think that the bacteria is causing the problem.
"We will continue to test for other things to rule out any other infections, but now that we know what the main bacteria is, we can treat it!" She was enthusiastic and I liked it.
She has a picture of a baby hanging from her white lab coat.  The baby looks to be about 9 months old and smiles at us every time she comes in to check on Willie.  I haven't asked her yet if that is her baby, but judging by the overly optimistic way she delivers news, I can only assume there is a lot of baby talk going on at home.  I imagine her baby is incredibly smart and already knows what Klebsiella is. 
Willie asked about the plans for the day and she said that it was going to be pretty quiet now that they had an answer.  His job was to rest and keep getting IV's.
After she left, we decided that Will was doing good enough that I could go to the store for a while and take care of business. 
It was the last thing I wanted to do, but businesses don't run themselves!  My sister in law and our family friend have been so helpful this week and have stepped in to run the shop the last couple of days.  We are so blessed to have amazing people around to help us at the drop of a hat.  We had a record day of sales yesterday which is another amazing blessing.  It never ceases to amaze me how we have been blessed in the right way at the right time along this journey.
I stayed at the shop until 7PM then picked some things up from the house and headed back to the hospital.  I felt antsy as I drove back, as if couldn't get back fast enough.  This round in the hospital has been the most nerve wracking days of my life.  I thought it was bad when they diagnosed him, but I was wrong. 
It is most definitely scary to learn that your husband has Leukemia, but the fear disappears with the knowledge that its' treatable.  I have now discovered that it is terrifying to know that your husband who has leukemia also has an infection of unknown origin that could kill him.  Fear is created by the unknown and we have been hanging out in that gray area all week.
I raced into the hospital and was shocked to find the doors to the unit had been locked.  There was a security guard sitting in front of them and a giant sign proclaiming that visiting hours were over. 
"What do you need Ma'am?" the guard asked me.
"I need to get to my husband!" I practically screamed at him. 
He looked bored as he scanned me from head to toe.
"What's his room number?" he finally asked then typed information into the computer as I quickly gave it to him.
After what felt like 10 minutes he picked up a phone and called the nurses unit.
"I have a Missy Beavers here to see Willie Beavers" he said into the phone. 
"His wife," he said after a long pause. 
"She said she's his wife" he repeated again into the phone.
My heart was beating a mile a minute as my mind raced through the possibility that they may not let me through the door.  I thought that I could take a back door in that I had seen employees enter through earlier.  Or maybe I could snag one of the white lab coats I had seen in the laundry room next to the cafeteria entrance and work my way up to the fourth floor posing as a doctor.  I thought of a scene from the movie "The Fugitive" in which Harrison Ford plays as an inmate who has to escape from a hospital.  He ends up stealing clothes from an employee locker and walking out of the hospital.
'I could do that,' I thought to myself as I played the scene from the movie in my head.  There is nothing I wouldn't do at that moment to see my husband.
The security guard hung up the phone and began writing on a sticky note.
"He you go," he said, as he peeled a visitor badge from it's sticky backing and handed it to me.
"The nurse had your husband mixed up with a man that's not married," he explained, "but she figured it out."
"Have a good night," he said.  I didn't respond since I was halfway through the door by that point.  I ran up to his room and burst through the door.  Willie was laying in bed looking better than he had in days. 
"Hi baby!" he said, and smiled.
My shoulders nearly touched the floor as I sighed in relief and smiled back at him.
It was the best moment of my week.
He said the doctors had come by and reported that his blood counts were improving.  He hadn't had a fever all day and had taken a really long nap.  He was feeling much better.  We were both relieved.
That night we had the same nurse we had on Tuesday night when we were admitted.  She is a middle aged women with shiny bangs that sit perfectly poised on her forehead.  She is spunky and has a level of quirkiness that must be induced by a chronic lack of sleep since she has worked the night shift for years.  She gave Willie another round of IV antibiotics and said he would be needing more red blood cells when the IV was done.  He didn't start getting the blood until midnight and I was out of it by then and dozed on and off as he received the infusion.  That finished around 2AM and Will decided he wanted to lay on the cold water pad again. 
He hadn't had a fever for a day at that point, so we didn't really need to cooling machine anymore, but since it was there and his back was sore from laying in bed he thought he would take advantage of it and lay on the cold pad for the back pain. I must have looked like a zombie as I helped him arrange the cooling pad in his bed, then I collapsed onto the couch and fell back asleep.  A few moments later the nurse came back in.
"Willie has Influenza B" she announced. 
We were both drowsy and nodded back to her in response. 
"That is the common flu, but people who are immune compromised can get it really easy and it can be life threatening.  We just got a call from the lab that they found it in Willie's blood so we'll start him on medicine for that ASAP."
"Ok," Willie said with his eyes half closed.
She stood for a moment more as if waiting for a bigger response from us, then turned and left.
I was sound asleep when I was woken up by Willie shouting at 4AM.
"It's leaking!" he said "There's water everywhere!"
I shot off the couch and joined him on the side of his bed.  There was a giant puddle flowing from the cooling pad.  I got the nurse and it took us 8 towels to mop up the mess.  His bed was also soaked so we had to changed all the bedding. 
"Did you hear what I said about the Influenza B?" the nurse said to me as she helped me put new sheets on the bed.
I nodded.
"Oh good," she said "Because that was a good find on the labs part.  It's important we treat that."
I agree.  It's important that we treat anything and everything that is keeping us from going home.
We finally went back to sleep around 5AM and were both exhausted when the nurses woke us up again 2 hours later.
We've had a pretty quiet day today filled with antibiotic IV's and naps.  The doctor came in this afternoon and reported that Willie's counts are still rising and we may be able to go home tomorrow or Monday if he continues to improve.  They are still checking for another lung infections called PCP, but she feels like that he doesn't have that since he is doing so much better.
Willie's weight lifting team had a competition in Sacramento today.  The team had "Strength For Willie" shirts printed with the gym name on the back.  Will was honored that they would remember him at the competition and he wore his shirt today to support them.  We just learned that the team got first place!  Congratulations friends!  That is a good ending to our day.

Here's to more healing tonight and hopefully a return home tomorrow.
Happy weekend to all!