New Friends and a Dead Battery

We made a new friend today.  His name is Casey and he is scheduled to have a bone marrow transplant the same day as Willie.  I noticed him on Monday when he came into the radiation waiting room.  He was wearing a pair of heavy, black, military boots that stood in stark contrast to his blue hospital gown.  He stands well over 6 feet tall and is as broad as he is tall.  I have watched him over the past few days and marveled at how the radiation has seemed to have no effect on him.  He whizzes into each appointment, pulling his carry-on bag of fluid behind him like it was invisible, then sits by himself and drums his fingers on his legs to a beat that only he can hear.
Tonight it was just he and I in the waiting room and I interrupted his finger drumming to ask him about himself.  He informed me that he is 22 years old, from the central valley and has been battling cancer for a year and a half now.  On his 21st birthday he got diagnosed with a cancerous tumor on his lung that led to radiation and chemotherapy.  The mass shrunk quickly and he had 6 months of complete remission last year before he developed 2 different kinds of leukemia. 
"I'm an overachiever," he said flatly "I didn't stop at one kind of cancer, I had to get 3."
I wasn't sure if it was mean to be funny, but I smiled back at him
"Well you must be excited about the transplant then.  It should be a cure for you!"
"Yeah," he shrugged "I've been on life support three times and I'm not even supposed to be alive now.  The way I see it, if the transplant works, it works, if it doesn't then it's over for me."
It was the saddest thing to hear.  I didn't know how to respond.
"Well at least it is hope." I said softly, but I think it was more to myself than to him.
"That's how my family is," he continued "they are all positive and say that it's going to work and that there is so much hope.  I don't know if Will feels the way I do, but me being the one with cancer, I don't really think that way.  I've heard the numbers and the realities and I know what can happen so we might as well be realistic."
He was wearing his filter mask which covered most of his face but his eyes; eyes that were far too sad for a 22 year old.
Willie came out and joined the rest of the conversation as we talked about the hospital and the plans to check in on Saturday.  He may end up being Will's roommate, we'll just have to wait and see.
As we walked out of the radiation clinic I filled Willie in on the conversation.  I told him about Casey's dismal feelings on the transplant and asked Willie if he felt the same.
"I've never been on life support," he said "I don't know how I would feel if I had been."
That's something I admire about Willie.  He is always careful to consider another persons circumstance in regard to their behavior.  Most of the time he helps me realize that I have never been in situations that most of the people I complain about are in so how can I judge?
"You know Casey has been dealing with cancer for almost two years," I said as we stepped into the elevator "When I hear stories like that it makes me think we have really been blessed that it's been such a short time for us."
"Yeah," he said "We are lucky."
It seems wrong to group cancer and luck in the same sentence, but we really have been lucky.  When all is said and done we will walk away from cancer after only one short year of mingling with it.  I will take that year with gratitude in contrast to the countless years some people deal with the awful disease.
We got in the car to drive home and decided to take the scenic route since last night we got stuck in rush hour traffic on our way home.  I stopped at the grocery store and Willie waited in the car.  When I got back in the car the engine wouldn't turn over. 
The battery was dead.
Worst.
Timing.
EVER!
I pulled out my phone and made two quick phone calls.  One to the car rental place, the other to a mechanic shop.  Both places closed in 10 minutes so I had to act fast to make sure it really was the battery that was the problem.
I went back into the store and asked the service desk if there was anyone who could help us.  The manager agreed to jump us from her own car.  We were parked with the front end next to a barrier so we needed to either move our car or move the car next to us.  The manager had the front desk page the owner of the car next to us and soon a dark haired Asian lady came running out.
"What happen to car?" she asked in heavy accented English.
"Nothing is wrong," the manager assured, "We just need you to move your car so I can help this lady jump her car."
She just stared at us, clearly not understanding.
"My car is broken," I said motioning "It does not drive."
"Oh...." she nodded, "But what wrong my car.  It get hit?"
"No, " the manager said, patiently "your car is fine, we just need you to move it or allow her to use your battery to jump her car."
She stared back at us blankly until the manager started using hand motions
"I need you to park your car there," she said making hand motions for driving and pointing across the lot to an open space.
"Ok,"she said back "my car ok?"
"Yes," we said back in unison, then she got in her car and moved.
The manager parked her car and hooked up the cables and our car started right up.
What a relief!
And what an awesome manager.  I can highly recommend the outstanding service we received at Whole Foods Market in Palo Alto.  It is the place to go for all your organic food and dead battery needs!
Willie is feeling pretty good today.  The nausea meds keep him pretty sleepy so he slept most of the day, but at least he wasn't feeling yucky.  He ate a muffin and some soup today which both felt like a victory for me.
Only one more day of radiation!
Goodnight all.

(Sorry no picture today.  For some reason it won't let me upload any tonight!)

A MUCH Better Day!

Today was a MUCH better day.  Willie slept through the night after we doped him up on anti-nausea meds.  He woke up this morning still feeling nauseous and dry heaved all the way to the hospital.  We were lucky to have the same nurse as yesterday so she got right to work getting him some medication.  I knew he was feeling better when he opened his eyes and looked across the room at me.  He pointed at his foot and shook it twice which is his way of asking for a foot rub.  I smiled at him moved my chair closer to rub his foot.  He smiled and closed his eyes, obviously pleased with himself for his clever communication. 
I spent the day sitting at the end of his bed occasionally rubbing his feet whenever he would wake up and shake his foot in demand.  He had three radiation treatments spaced 4 hours apart so we would go downstairs for his 8 minute treatment then come back up to the cancer center and wait the 4 hours.  He spent most of the time sleeping as he is feeling exhausted.
I knew he was really feeling better when he asked for some french fries.  We stopped on the way home and got him some.  He ate each fry like it was the last one on the planet.  So far they have stayed down just fine and he is sleeping again. 
That's all the updates for the day. 
Short and sweet. 
That's so unlike me!

Off to a Rocky Start

Last Friday I got a call from Dr. Laport, Willie's transplant doctor.
"I thought you are on vacation!" I said, after we said hello.
"I am," she said with a laugh "but I had to call you personally because I actually have good news this time!"
"Impossible!" I teased, although it is true she has been the bearer of bad news in recent months.
"We got the results from Willie's liver biopsy and everything looks perfect!  There is no scarring or tissue damage so it confirms that his numbers are high due to fatty liver."
I heaved a sigh of relief into the phone.  It was fantastic news!
"We'll go ahead with our planned schedule then and I'll see you guys next Wednesday!"
We said our goodbyes and I hung up, but not before another small wave of panic hit me.  I only had two days left at home. The time was going by too quickly.
We started to pack on Saturday afternoon, but hadn't made it very far by Sunday afternoon.  We had Willie's family and friends over for lunch and had a great time talking and laughing.  It was a recharge for our batteries that we were both happy to have.  Our plan was to leave for Stanford by 3-4PM on Sunday.  We didn't leave until 9 PM!  Willie just didn't want to go!
We got to our apartment at Stanford about 1:00 AM on Monday morning and had to be at the hospital at 7 AM.  Needless to say, we were both sleepy for his first appointment. 

Waiting for treament to begin

We had no idea what was planned for the day when we showed up at the cancer center.  His nurse started him on IV fluids and gave him some IV Zofran for nausea.  We have been warned that radiation can cause vomiting so they get try to stay ahead of the game with the meds.  At 8:30 we were sent downstairs for his first radiation treatment. 
The hallway down to the radiation department is long and cold.  It is on the bottom floor of the cancer center and passes by a series of windows that are covered half way by concrete stairs.  We were instructed to enter the only door on the left side of the hall.  When we entered it was a different world.  It looked looked like a lobby from a classy hotel with waist high banisters surrounding the room and calming colors of carpet and paint.  The chairs are set up around the perimeter of the room leaving every patient in the awkward position of trying to avoid eye contact with other patients.  Several people in the room were wearing hospital gowns and a nurse came out and instructed Willie to join them in gown wearing. She showed him to changing room and he came out a few minutes later in an open back gown.
A few minutes later he was taken back to the radiation room and I waited on pins and needles.  A woman came in with a soft pink hat covering her balding head.  She removed the hat and began fanning herself.  Moments later another woman entered with a shaved head and tired eyes.  Her feet were covered in cozy pink socks and tiny pink ribbons that gave away her fight with breast cancer.  There was no talking in the room, everyone kept silently to themselves.
Suddenly the door opened and an older woman entered with a flurry of movement and noise.  She plunked her purse on the seat next to me and sat down with a loud sigh.
"I'm so sick of cancer!" she announced to the room.
I watched as every eye in the room looked up cautiously toward the woman.  Several heads nodded and the woman in the pink socks laughed softly.
"My husband is getting radiation," she kept talking as if everyone had an interest in her story "I can tell you this, if I was getting radiation I wouldn't be nearly as angry as my husband is."
She paused to see if anyone was listening.  Most of  the eyes in the room were now buried in magazines.  Only the pink sock lady and I remained her targets.
"Can you believe he didn't like what I am wearing today, but I told him I don't care, it's the only thing I have clean!" she nudged me as she said this and I turned to look at her.
I had to stifle a laugh as I took in the full absurdity of her outfit.  She wore a heavy brown overcoat that is better suited for someone working construction, under that peaked out a neon green shirt with some writing and pictures on it that suggested it came from the juniors department at Walmart.  Her pants were an over sized pair of camo print with giant cargo pockets that could hold a medium sized cat.  She topped this all off with a multicolored hat that blended well with her outrageous eye makeup. 
She was a prize to behold.
"Yeah, cancer sucks..." she said again, this time to me "but you wouldn't understand that, you're too young!"
I stared back at her, but said nothing.  I didn't even know where to begin to respond to such an attack.
I wish I didn't understand cancer. 
I wish age qualified someone to be affected by the terrible disease. 
I wish I was too young.
"But you've got a pretty purse," she said, after a moment of silence "I like the way it shines." She pointed to the rhinestones on the outside of my purse and smiled at me like we were old friends.  Apparently if I can't understand cancer, at least I can have a pretty purse!
It was a stupid exchange, but it put me on edge.  When the nurse called my name I jumped out of my chair and nearly ran to the door.  Willie wasn't with her and I felt a bit of panic. 
"The nurse is waiting to meet with you and Willie." she said, as she lead me to an examination room.
"Is everything OK?" I asked, keeping my voice steady.
"Yes," she replied "this is what happens on the first day of radiation."
I relaxed a bit when I saw Willie sitting on a chair and looking the same he had when he left.  I don't know what I had expected from radiation, but the images in my mind were far worse than the reality.
"Did you feel anything?" I asked as I sat down.
"No," he shrugged "just my feet got tired from standing still so long."
We met with the nurse to discuss the plan for the week.  He will have New Year's Day off from treatments then receive 3 treatments on Wednesday, Thursday and Friday before being admitted on Saturday to start receiving chemo.

The carry on bag of water

We went back up to the cancer center after our meeting and met with the home health nurse.  He was a pleasant man of Asian decent with a jolly smile and an affinity for hearing himself talk.  He explained that Willie will be receiving continous IV fluids during the radiation treatment.  This means he will be receiving the IV when we go home.  He pulled out a 4 liter bag of water and set it on the table.  It was quite the sight.  He explained that Willie will get one of those bags infused every 27 hours.  He showed me how to work the pump then connected Willie to the IV and placed the bag in a black bag with wheels that looks like carry on luggage. 
It was about 11 AM by this time and Willie was starving.  We had ordered food long before that time, but it was yet to be seen.  The tray of food finally arrived around 11:45, but Willie was nauseous by that time.  He tried sipping water and eating crackers, but it didn't help.  He was still queasy at 1 PM when it was time for his next treatment.  The nurse got him a wheelchair and kicked us out to radiation, handing him a pink bucket for the road.
We made it out into the atrium before he threw up.  Willie doesn't do anything quietly and his retching noise is horrifyingly loud.  The sound echoed around the open hallways as he heaved over and over again.  Tears came to my eyes as I watched him bent over in pain. 
I have only seen him throw up a few times in our years together.  The first time he was sick was when we had been dating about a year.  I was living in Sacramento and had come up to Willows to visit for the weekend.  We had gone out to dinner and were watching a movie when he suddenly announced he was going to throw up and ran to the bathroom.  That was the first time I met his beastly grunt of a throw up noise.  It was as if all the walls in the house were shaking from the echo of his retch.  I recall sitting on the couch and staring straight forward in shock.  I didn't know how to respond.  I had heard time and again that in order to know if someone you are dating is the one, you must first see each other when you are ill. This was advice passed from one lovestruck teenager to another. I recall the explanation being that you must see your partner sick in order to see if your love could endure the illness.  If you still loved them afterward then it was meant to be!   Now I feel like that is the most ridiculous advice of all time, but at that moment on his couch the words echoed in my head and I flew into action in hopes of this illness being the confirmation of our destiny. 
Apparently the marriage advice worked for us.  I spent that weekend nursing him through a 24 hour flu and 2 short years later we were married....!
It took a few moments for the echo to leave the atrium when he finished throwing up. When all was silent he handed me the bucket and said
"Let's go."
I handed the bucket to a passing nurse and we continued downstairs.  He handled the second treatment well and we met afterward with the radiation doctor.  We told her about his throwing up and she assured us that unfortunately that is going to happen.
"I guess this means it's working though," Willie said, looking on the bright side.
Her laugh was unexpected as she was caught off guard by his remark
"I guess that's one way to look at it! They definitely turned the beam on!"
We went back up to the cancer center and the doctor and nurse were waiting in his room to discuss the throw up incident.  I was impressed at the speed and interest everyone was taking in Willie.  The Doctor wrote Willie a prescription for Zofran to take at home and we left for the day.
Last night was rocky. 
Willie threw up several times and hasn't kept anything down yet today.  We went back to the cancer center this afternoon and the same doctor from yesterday came to check in.  We told him about the constant heaving and he responded quickly


Snoozing in the apartment with his suitcase of water

"It's time for the big dogs then," he said "I will order you some IV treatments that should knock this out.  You'll get one today and one for the next two days."
We both smiled and thanked him and soon the IV began.
Our hopes were high that the results would be immediate, but 2 hours later Willie was still sitting on the side of the bed with a trash can in his lap.  He was still feeling quesy, but hasn't thrown up since and he is now sleeping on the couch so I'm hoping he will wake up with some relief from the nausea. 
I think we have learned in one short day that radiation is ALOT worse than chemotherapy.  We could use some prayers for the rest of the week.  I'm praying that he can make it through the rest of the treatments and that the doctors who work with him will be inspired on how they can best help him.  We are still in good spirits and I admire Willie's attitude in the face of trial.  He is stronger than cancer and will grit his teeth and see this through.
Happy New Year!!! 
We are looking forward to a year of adventure and healing!

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...