Sunday, August 26, 2012

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!

Friday, August 24, 2012

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!

Tuesday, August 21, 2012

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!

Saturday, August 11, 2012

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!

Saturday, August 4, 2012

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!

Thursday, August 2, 2012

Stupid Fever



Today I'm quitting cancer.  I've put up with it long enough and I'm sick of it.  I think it's time we part ways.
I'm writing this from a hospital room at Enloe hospital.  We have been here since Tuesday.  Willie had been feeling pretty good after receiving his last chemo treatments two weeks ago.  So good that he was out and about doing things when he should have been at home.  We went to the infusion center on Monday to get his labs checked.  His red count was 7.7 and platelets were 22.  The parameters for infusion are when reds are below 7 and platelets below 20.  We had the option to get the infusions on Thursday or Wednesday.  We chose Wednesday; the sooner the better, we thought.
It's funny how different it is to receive care as on outpatient.  I would think that we should have gone back the very next day for an infusion since his counts were borderline for infusing, but they didn't seem concerned.  When we were inpatient at Stanford they watched the counts like a hawk.  I remember one day his counts were OK in the morning, but had fallen below the mark by the night draw so they infused immediately.  Knowing this history of quick count drops, I was nervous to take him home and not be able to know for two days if he counts had dropped.
On Monday night he started feeling dizzy.  Red blood cells are responsible for carrying oxygen throughout the body so when they are low one will feel dizzy.  He shrugged it off and said he could make it till Wednesday.  I've never been so worried.  I woke up every hour on Monday night to check if he was breathing.  He was, and he breathed his way all through the night.  When we woke up Tuesday I had a feeling that we would be going back to the hospital that night.  I went to work for a half day then came home to find Willie curled up in bed. 
He had been there for about three hours after he had walked outside in the heat and was overcome with weakness.  He was running a fever so I insisted we go to the hospital. I called the Infusion Center and had them arrange for him to receive the blood they had ordered for him on Wednesday a day earlier.  They said they would work everything out and all we had to do was ask for Dr. Talebi when we got to the ER. 
I have discovered I have no patience for emergency rooms.  Willie was wearing his heavy duty filter mask and was slumped over in his chair when I wheeled him into the ER.  The waiting room was full of onlookers who were all instantly focused on the man in the mask the second we pushed through the sliding doors.  I could feel the weight of 30 sets of eyes scanning us up and down as they tried to assess why we were there and what the mask was all about.  I know they were doing that because I have done it myself in the past.  I am not above staring.  I like to think I do it a bit more tactfully though.  If anything, this journey has taught me just how much I do stare at people in different circumstances than me.  I try not to judge those who stare at us because I realize that I stare out of concern and curiosity.  I know they were doing the same, but I wanted to turn to the room and shout at them to stop staring.
"He's got cancer!" I wanted to yell "That mask is protecting him from you!"
We were instantly met by a woman with a clipboard who checked us in and led us to the front window.  Another woman finished the paperwork and told us to wait with the others.  I objected and told her that he has no immunity and I would prefer he be moved somewhere private if possible.  She allowed us to park in the middle of the 5 foot space that separated her desk from the crowd.  It's silly how cancer turns strangers into germ harboring enemies, everyone is suspect.
We must have looked adequately uncomfortable for them to expedite our case and we were called up next.  A girl hooked willie up to a blood pressure machine and started asking questions rapid fire questions.  The mask muffles everything Willie says so after asking him to repeat himself several times, I took over for him.  She was asking a silly amount of questions and we were both getting antsy.  Suddenly Willie announced he was going to throw up and I no sooner handed him a trash can than he lost his lunch inside.
The intake girl was unfazed and continued on with her exam.  Willie had his head buried in the trash can as she tried to run a rolling thermometer across his head.  It was comical to watch.  I couldn't figure out why she couldn't wait until he was done.  She looked annoyed when she couldn't get the blood pressured cuff to work on his bent arm that was holding tightly to a trash can.  She sighed, then got up and and disappeared though a door.  He finished expelling his stomach contents as she returned and announced that she was just going to move him to a room.
We now know that all we have to do to get priority is thow up in the ER!
We got a private room and the place flew into action.  They ran an EKG, took a chest x ray pulled labs and had doctors in and out in a matter of minutes.  After about 30 minutes a doctor entered the room and introduced himself as the attending physician.
"Congratulations," he said with a smile "you have the lowest blood count I have ever seen!"
We stared back at him, not sure how to react.  I wanted to break into applause and demand a speech from the amazing Willie Beavers who walks around with blood counts so low that ER doctors are impressed.
His red count was 6 and his platelets 7.  The doctor was amazed that he was sitting up and talking.  There goes Willie again, breaking records....!
He said we would get blood ASAP and be admitted upstairs.  This was around 6PM, we didn't see the blood until 9PM.  We have learned that nothing at Enloe hospital happens at the speed of Stanford.  We have been spoiled by Stanford standards.  They started the blood in the ER and we were finally transferred to a room at 11:30, just a short 6 hours after we arrived!
He received two units of blood that night and a unit of platelets.  He spiked a fever on and off all night and the blood he received did little for him.  In the morning his red count was  6.2 and the platelets had made it to 9. 
Wednesday he received two more units of blood and one more unit of platelets.  That night his counts were up to 9.2 for reds and 22 for platelets.  That was great news, but he still had a fever.  They have been giving him every antibiotic on the planet in hopes of targeting the bacteria they know is in his blood.  They were able to tell that much, but they were running more tests to find out exactly what it is. 
Willie was out of it most the day and shifted between fevers and chills all day.  It is the most nerve wracking thing I've ever witnessed.  This is the worst he has been in this whole cancer journey which is kind of incredible since he has already endured the strongest chemo on the planet, twice and had a C-Diff infection.  It's so hard for me to watch him lay there and shiver with a fever of 103.  I want to scream at that fever and tell it how ridiculous it is to mess up our lives like this.  Doesn't that fever know what we've been through already?  How dare it do this to us on top of everything else we've already been through!
I hate that fever.  That stupid, selfish, fever.
This morning he was still running hot so the nurses introduced the water blanket.  It is a thin sheet of plastic attached to a pump that pushes cool water through it.  The first one they brought in was not working right so they called in other nurses to assist.  At one point there were three nurses surrounding the unit while Willie patiently waited to be cooled.
How many nurses does it take to operate a water cooled blanket?
Apparently more than three!
They finally had to bring in a whole new until which worked like a charm and brought his fever down in no time.

Then he started coughing.  It started with one single cough, then in a matter of minutes he was having a hard time breathing and was weezing.The nurse listened to his lungs and got a worried look on her face.  She left to call the doctor and returned with an answer.  His lungs had started filling with water from all the IV fluids he has been receiving.  I couldn't take any more of this rollercoaster of emotions.  He laid there weezing and I could see his heart beating through his chest.  I was sure he was going to fill up with water until he suffocated.  The nurse gave him Lasix which is a diuretic that made him pee off some of that water.  It worked instantly and he was able to breath better after about 20 minutes.  They also stopped the IV fluids so he won't drown!
The doctor came by around 4PM today and announced that they had found the offending bacteria.  That's good news because now they can give antibiotics specific to that bacteria which will be more effective.  The bad news is that since he is still spiking a fever and has been on a slew of antibiotics, they need to find the source of the infection.  She is thinking he has an abscess somewhere in his body that is full of bacteria.  Tonight they will be doing a CT scan of his whole body to find the offender. 
Please join us in praying they find it quickly. 
Until then, we continue to wait and Willie continues to sweat and get blood.
This was only Will's first round of consolidation chemo.  When I think about the three more rounds he has to do it makes me sick.  At least this current experience is teaching us a lot about what NOT to do next time.  Now we know that when they say he has to be in isolation after receiving chemo they mean ISOLATION!
As for now, we wait for the CT scan and hope that this fever will go away. 
A few minutes ago Will decided to lay on the cooling blanket instead of draping it over himself.  I laid the cool sheet down on the bed and he climbed on top and shivered.
"Chili Willy the Penguin!" he said.
I laughed.
It was the first thing he has said in days that isn't related to his current state.
"That's clever!" I praised him, thinking he had made that up himself
"Do you know that cartoon?" he asked, correcting any thoughts I had of his cleverness.
"Nope." I said
"Go look it up on your Google machine!" he said and I laughed again.
He must be feeling better if he can mock my love of Google. 
I looked it up on my Google machine and found the following:
http://www.youtube.com/watch?v=WJ_L1OFujD8
This has become our theme song.

And now I'm off to tend to Chili Willy the Penguin.  I just played that theme song for him and he smiled. 
I love that smile that the fever has taken away for the past few days.
Less fever.  More smiles.