Updates and Anniversaries

It's a little ridiculous that I haven't updated this blog in a full 3 months!  We have been so busy with work and life that I have had no time to think of anything else.  Our summer was magnificent.  We took a trip to the coast, went to a Giants game, visited family, took a few weekend getaways, and traded in our old car for a Toyota Highlander.
We are moving up in life!
Willie has been feeling fantastic!  Our only complaint, if we had one, would be that we are becoming too busy between our two businesses.  This is a great complaint to have and we feel so very blessed for the success we've had in business and health. 
Today we celebrate 9 months since Willie got his new cells.  It's hard to believe how fast the time is flying by.  We also celebrated our 4th wedding anniversary last Thursday. We took a trip to Reno for the weekend to celebrate.  The highlight was a trip to Scheels which is a HUGE sporting goods store that is so big it houses a Ferris wheel!  I have been talking about riding it for a year and couldn't wait for our spin.
It was so much fun!  I could have stayed in the car next to my husband spinning round and round forever.
Life after cancer is a curious place.  There was a time when we had to adjust our expectations of life and our future and adapt to our new reality, but mostly we have returned to life as it was before Willie got sick with one stark difference:
Everything has changed.
I have found that my capacity to love has grown beyond my own ability to understand.  We are able to find joy in the simple things in life and laugh with greater ease.  We empathize with people in their own challenges and understand that everyone walks their own path which shapes who they become.
And we are always in the process of becoming.
Our future is bright and our hopes and dreams are limitless.  We go back to Stanford this week to check in with Willie's doctor and hope to be moved from every 6 week check ups to every 8 weeks.  He continues to take immunosuppressant drugs to keep his body from rejecting the new cells and we are in the process of weaning him off of those.  They hope to have him off of these entirely by next summer. 
And life goes on.
I am writing this in my living room as Willie lies next to me on the couch and flips happily between 2 football games.  Kona is lying at the foot of the couch and he intermittently scratches her belly and talks to her. 
I am complete.
Life is good.
"Happy football season!" Says Willie.

One Year Later

One year ago today our world was changed forever. 
I remember the day in vivid detail as if it were yesterday.  Time drifted by at a glacial pace as we were quarantined in Enloe hospital anxiously awaiting the results from Willie's first bone marrow biopsy.  We were both exhausted.  The 2 days previous had been filled with countless doctors, a battery of tests, uncomfortable hospital beds and an underlying fear that prohibited either of us from relaxing.  I hadn't washed my face or changed from my black and white striped shirt from the moment we had arrived at the hospital. 
At lunch time I left the room momentarily to get some food at the cafeteria in the basement of the hospital.  A woman ahead of me in line kept glancing back with concern and asked if I was OK.  I forced a smile and nodded.
"I'm fine." I lied.
She smiled softly and we stood in silence for a moment. 
"Things will get better." She said, touching my shoulder with a caring hand. 
I nodded and smiled back at her with an expression that probably looked more like a grimace.  I didn't see how anything could get any better.
I knew in that moment that my husband had Leukemia.
He didn't know it yet, but I did.
I had known for a week after doing endless research on his symptoms and lab work.  It was a dark, nagging feeling that spawned from the depth of my core.  I wanted more than anything to be wrong, but I knew in my heart that I wasn't. 
I caught my reflection in the elevator mirror on the way back up to his room.  My eyes were hollow, eye makeup smeared, hair in a ratted mess and the trail marks of tears were evident in my worn makeup.  I looked like a train wreck!  It was no wonder the woman in the cafeteria was so worried about me.
I pulled my hair into a pony tail and wiped the makeup from my eyes with the tail of my shirt, before stepping off the elevator.  Willie was in one of two isolation rooms that had an attached foyer with a hand sink in it.  I entered the first door and carefully washed my hands.  The door to the neighboring room was wide open revealing a Hispanic family gathered around their aging father who lay motionless in the bed.  Their eyes held the same hollow pain that I had witnessed in my own, yet I knew their journey had been a very long one. 
My eyes caught those of an older woman who held the hand of the sick man.  I forced a small smile of empathy, but she returned nothing.  I lowered my eyes in respect and pushed the door open to our room.  I was shaken to the core, as if I was witnessing our future.
And I wanted no part of it.
It was only a few hours after that when Dr. Lombardi dropped the bomb of a Leukemia diagnosis.  We processed the news together for a few hours as I sobbed from a place in my soul that I didn't know existed.  I felt there wasn't enough tears to soften the blow that we had been dealt.
In the evening hours I stepped outside to call my family.  The sun was setting behind the hospital tower and I recall the long shadows that crawled across the parking lot.  I stood in the shadow of one of the towers and felt engulfed by it's darkness.
"Mom?" I shouted into the phone when she answered.
"Hi sweetie." She said brightly.
"Mom, it's leukemia." I sobbed.  "Willie has leukemia."
I screamed the news between sobs that I didn't even try to stifle.  I felt like an inconsolable child in the midst of tantrum, except there was nothing that could be done to make things better.
The other line was silent as I gasped for air.
"Moosie." Mom said firmly, using my childhood nickname.  "We're going to get through this." Her voice was fierce with conviction.
"I don't know if I can do it." I admitted.
"You will do it." She assured.
I cried some more.
"Moosie, what is the worst thing that can happen?" She asked.
"He could die Mom!" I shouted.
"Yes honey, he could die.  And then what?"
"Then I'd be alone."
"And do you believe you'd see him again?"
I stopped pacing around the parking lot and looked up to the sky.  A feeling of peace filled my soul as I was reminded of this truth.  I know there is a life after this one and I know we will be able to see our loved ones again.  This perspective takes the fear and pain out of death.
"Yes." I breathed through my tears.  "I do know I will see him again if he dies, but I don't want him to die."
"None of us want him to die honey and I don't think he will, but it's good to address the worst case scenario so we can move forward with hope."
I nodded my response knowing full well that she couldn't hear it through the phone.
She was right, and the reminder made me feel much better.
I walked across the parking lot and stood in the last rays of light that peaked around the tower.  The evening heat tickled my skin and I held my hands out at my sides as I welcomed the warmth that filled my soul.  It was as if the solar energy was recharging my warn batteries and I could feel my fire rekindling inside.
I stared the hospital with renewed determination. 
We would face this cancer and we would win. 

And win we did!
Today we look back at the past year with gratitude.  We have learned more from walking through the fire of cancer then we could have learned in a lifetime of experiences.  I have cherished every moment I have been able to spend with my husband and I'm most grateful for the amazing support from family and friends that have made it possible for us to be together.  We have been blessed so deeply that I stand in awe at the kindness that has been shown to us.  Most importantly I am grateful to a loving God who has perfectly orchestrated all of this for us. 
There are no words to express our complete gratitude.
Thank you will never be enough.

Willie is doing fantastic!  We have had two follow up appointments at Stanford with Dr. Laport and both appointments have been uneventful.  Yesterday we drove 3 hours to Stanford just to see the doctor for 10 minutes!  It was a 6 hour round trip for her to confirm that he is doing as well as he feels and tell us to come back in 3 weeks. 
The drive is never a burden though, as we are happy to give up that time in order to consult with the best doctors on the planet. 

Life is good.
I started to work again at our nutrition store and Willie has been helping out at the gym.  His doctor cleared him to start lifting weights again so he has been slowly starting back.  I watched him bench press 150 lbs the other night like it was nothing.  I find it funny that in my wildest dreams I could never bench that much and he is doing it easily after having a bone marrow transplant!  It's fantastic!

Thank you all for your love, prayers, donations, thoughts and support.  We are so very, very grateful.  I'll still update the blog occasionally, but I'm dedicating my time now to writing a book about our adventure!
And what a wild ride it has been!

The Last Visit at The Cancer Center

People are fantastic!
This world would be so empty without our relationships.  The best part of this past year has been the people we have met along the way.  We have welcomed doctors into our lives like family members and made friends that will last a lifetime. 
Last Tuesday we went to Willie's appointment at the cancer center.  Lenny came over with his usual smiling face and got updates on how things have been going.  Willie had been feeling fantastic and we have no complaints except for the ingrown toenail that is nagging him, but even that is nothing in comparison to where we've been.
"You've done really well." Lenny said with a smile.  "I'm going to miss seeing you here, but I wish you two the best of luck in the future."
"Is this goodbye?" I asked in shock.  We've had a lot of false alarm goodbyes in the past and this one was entirely unexpected.
"But we have an appointment here next week." Willie corrected.
"Your appointment next week is with Dr. Laport downstairs." Lenny said with a shake of his head. "She will do your lab work down there so this is the last time we will ever see you here in the ITA."
It was a declaration I wasn't prepared for. 
We must have looked like we had been slapped because Lenny just laughed and gave us both a hug.
"You're going to be fine." He assured.
We thanked him profusely for all he has done for us then said another goodbye. 
"Come and say hi anytime." He encouraged with a wave.
We said goodbye to a few nurses in the hallway then took our final walk out of the cancer center.  That is the last time we ever intend to enter that unit as a patient!
On our way out to the parking lot we stopped by a booth that was promoting clinical trials.  Willie told the woman at the table that he had given blood and tissue samples for research studies and the lady jumped out of her chair and gave him a Stanford pin that says "Hero for Research."
He immediately pinned it on his shirt and smiled.
"Now I'm a Stanford doctor." He said and I laughed.  I had to agree the resemblance the pin provided was uncanny.
We were still a little dazed as we waited for the valet to get our car.
"I didn't know today was going to be our last time." I said to Willie.
"Me either." He agreed. "It feels weird."
A nurse called to us from the crosswalk then came over to congratulate us.
"Today was our last appointment at the ITA." Willie told her.
"I know." She smiled. "I am so happy for you."
"Aren't you retiring soon?" I asked, knowing the date is drawing close.
"Tomorrow is actually my last day." She said bashfully. "I'm trying not to broadcast it, but it's ironic we are both leaving here at the same time."
We gave her hugs and thanked her for all of her help as well.  She has been with us through these past few months and we have grown to love her.  We wish her all the best in her retirement.

There is not a word powerful enough to relay our gratitude to the staff at Stanford.  We have always had complete confidence in their care and have felt like family among the staff.  If we had to have cancer, I'm happy we were able to get treatments at such a stellar hospital.
I am also most grateful to our community for their continual support of Willie.  I have been working a bit at our store and have received nothing but encouraging comments and well wishes for Willie.  His victory over cancer is a victory for the entire community and their joy brings us joy anew everyday.
We wouldn't be here today with the support of this awesome community and the thoughts and prayers from loving friends and family. 
People are awesome!
This coming week we meet with his original transplant doctor.  We haven't seen her since February so we are looking forward to meeting with her again.  She will be giving us the results on how many of the cells in Willie's bone marrow are his and how many belong to the donor.  Lenny said he expects that 100% of the cells will belong to the donor and that is what we're shooting for. 
More updates on that to come.
Happy Sunday to all!

Day 100!!!!

Today marks 100 days since Willie received his transplant.  This is a big day in the transplant world because it is the day that most patients get to go home.  We were lucky that Willie did so well that we have been able to be home for two weeks now. 
The day got off to a fabulous start when we learned the our friend Casey got good results on his bone marrow biopsy.  They found no cancer cells and he gets to join Willie in the cancer free club!  We are so happy for him and his family and celebrate in their joy with them.
Willie and I went to lunch in Chico to celebrate our victory.  We had an amazing meal at the Pour House which is a restaurant we've been talking about going to for a full year. 
"Do you feel like the past 100 days have gone by fast or slow?" I asked Willie as we ate our delicious burgers.
"It feels like longer." He said between bites of his fancy burger.
"To me it feels long and short at the same time." I agreed.
"Yeah." He nodded.  "There were parts that were really long, but overall it wasn't that bad."
I agreed.
It was 100 days spent in a total time warp.
And I'm grateful for every moment of it.

Things have been awesome the past two weeks since we've come home.  Willie continues to improve and has been feeling excellent.  Baseball season started again so he is busy watching his Giants play and annoying the dogs as much as possible.  The dogs couldn't be happier to be annoyed by him so it is a perfect scenario.

That's all the news for today.

Happy day 100 to all!

Cancer Free!!!!

Yesterday we walked away from cancer.
FOREVER!
We woke up early for our 3 hour drive to Stanford which didn't feel like the slightest inconvenience since it comes with the freedom of living at home.  We arrived at the cancer center just before 11 AM and got to sit in the common area instead of an isolation room for the first time in almost two months.  Willie was feeling good and looking great! 
"I'm just so happy to be here today." I said to Willie as we took a seat and waited for our nurse.
"Why?" Asked, slightly skeptical.
"I don't know." I replied.  "I guess because it's the first time we've come here just to check in and not for anything else."
He nodded in reply and I sat back in my chair and smiled. 
I was completely content.
A handful of nurses came by and talked with us like we were celebrities at an event.  Each of them congratulated Willie on a job well done and he accepted each remark with grace.  After a few minutes Lenny came over, found himself a rolling stool and sat down in front of Willie.
"Congratulations my friend." He said with a smile so wide I thought his face would split. "We got back the preliminary results on your biopsy and there are no cancer cells to be found!"
Neither of us were expecting to hear results until our appointment on May 1st so this news slapped us both into a stunned silence.
I looked at Willie, who was looking back at me with the same face of shock that must have been on my face.
"You got results back already?" He responded in what must have been the only thought he could grasp.
Lenny laughed and patted Willie on the knee.  "You did it man." He said brightly.  "You did it!"
I exhaled so long and loudly that I think the people across the room may have felt the wind.  It was as if the breath I have been holding since his diagnosis finally found it's escape in this amazing news.  I have imagined this moment when I hoped to hear news like this.  I thought I would cry and throw myself on the ground in exhausted sobs, completely overcome with gratitude.
That didn't happen.
I was overcome with gratitude, but it translated into a feeling of happiness so intense that I can only compare it to the excitement I felt on Christmas morning as a child.  I wanted to stand on my chair and sing out to the world that we had made it, that we did it!
I reached out and touched Willie's other knee and he smiled back at me.
"We did it!" I echoed Lenny.
"We did it." He repeated softly to himself, as if he didn't really believe it.
"That right," Lenny nodded. "You both did this. You couldn't have done it without your awesome wife."
"I am awesome!" I joked.  "I have to remind him how awesome I am though."
"My wife tells me too." He laughed.
He turned to the computer, implying it was time to get back to business.
"We are still waiting on the cytogenetics of the biopsy which will tell us what percentage of the cells are the donors, but I would be surprised if it wasn't 100% donor cells since everything else looks good."
We nodded in reply and he continued to click on the computer.
"Your labs look excellent today so we'll just stick with the current plan and see you in two weeks!"
With that, he shook our hands, congratulated us again then sent us on our way.
It was the shortest appointment we've ever had which is truly ironic since we had to drive 6 hours round trip for it.
But it was worth the good news.
The best news ever!
We left the cancer center walking on air.  I can't remember a time in my life when I have ever felt a sense of complete and utter joy as I did in those moments.  It was the definition of bliss.
We walked over to the F Ground unit to visit Casey.  He was having a hard day and we had nice visit with him. I hate the fact that he is still in the hospital while we get to go home, but I have to remind myself that cancer does not take any two people on the same path.  Casey said he wasn't feeling very inspiring that day and it led to an interesting discussion on staying positive through cancer.  It is no easy task to remain upbeat and happy through the drudgery of treatment.
In fact, I think it's impossible.
Casey is an inspiration as is Willie and any human being who has ever been dragged through the battlefield of cancer and struggled to stand at the end with their heads held high.  They are an inspiration not because they are happy every day or smile in the face of torment, but because they have the courage to face the fears that many of us cannot comprehend.
When we were in the hospital last year waiting for Willie to be diagnosed, a good friend of ours counseled us to have courage to accept the diagnosis he would be given.  We didn't know the full depth of this statement until we were thrown into the fire and our courage was tested on a daily basis.  Courage is defined as the ability to do something that frightens one and strength in the face of pain. 
Cancer has given these men courage beyond any of our ability to understand.
It has tumbled them through a course of refinement until all of their rough edges have been polished and they have shined like precious stones.
It has pushed them to the very edge of their capacity, past the point where the rest of us would have waved a flag in the air while shouting "I give up! I can't do this anymore!"
They are men of complete and total courage.
And their courage brings us hope to face our fears that are far less challenging.
And that, Casey, is what makes you inspiring!

Today I am overwhelmingly grateful for the events of this past year.  Willie still has a lot of healing to do and we know our lives will never be the same, but I am happy to accept that.  We are different people than we were a year ago when we began this journey. 
We are better.
We are stronger.
Above all, we have gained a deep and personal relationship with our loving Father in Heaven who has sustained our hope, quieted our fears and provided us with miracles beyond comprehension.
It is this gift that I am most deeply grateful for and one that makes this trial a small price to pay for the reward it has given.
I feel we have walked through the fires of Hell and come out happier because of it.  The concept boggles my mind, but it is undeniable.   I now stand with a firm conviction that there is no trial so big that it is impossible to conquer.  There were times along our path where the weight of the burden brought us to our knees, but these were the times when we looked upward and cried out for help. 
There is always divine help awaiting those who ask.  I know this because we never would have made it without the silent support of heavenly hands that helped carry our load when it seemed we couldn't go a step further.  God does not take our burdens from us, but he is always waiting to help us carry the load.
Thank you all for your love, prayers, thoughts, donations and overwhelming support.  We have been blessed beyond reason and are most grateful to everyone who helped us along the way. 
Hugs all around!
 

Day 85. Willie's Birthday and Moving Home!

Tuesday was an emotional day for me.  We moved out of the apartment in the morning then went to Willie's appointment at the cancer center.  It was the big biopsy day that we have been dreading and simultaneously looking forward to for weeks.
"I've been getting my arm loosened up." Lenny joked as we passed him on the way to a private room.  "I'm just going to lift some weights then I'll come do the biopsy."
We have really grown to love Lenny and will miss seeing him twice a week.
The nurse drew about 15 tubes of blood.  Some of them were for tests, but most were for a study that Willie has been a part of that will help identify blood markers in Leukemia patients.  When she finished, Lenny came into the room with a lady from the lab.
"You ready for this?" He asked with a broad smile on his face.  "We only need aspirate today so I won't need to use the drill."
We both exhaled loudly at this news.  When a bone marrow biopsy is done they drill into the hip bone with something that looks like a hollow screw driver and take out the blood inside the hip.  This is called aspirate fluid.  Sometimes they take a bone sample as well which means drilling into the hip again with a hollow screw driver and popping out a piece of bone.  That second part of the biopsy is the most painful and Willie was not looking forward to that.  We were so happy to hear they only needing aspirate.
Lenny prepped Willie for the biopsy and started drilling within minutes.  He got into the hip on the first try and attached a large syringe to the instrument to suck out the marrow blood.  Willie says this part feels like they are sucking your insides out and can be painful.  Lenny needed 6 cc's total and took his time drawing up the aspirate.  He handed the syringe to the lab tech who squirted it in the dish and smiled.
"This is a great sample!" She said. "There are a lot of spicules."
"Is that a good thing?" Willie asked.
"It means there are cells in the marrow, which is good." Lenny replied.  "Now we have to test them and see if they are cancerous cells or not."
The room fell quiet under the burden of this news. 
"We have no reason to think there will be any cancerous cells though." Lenny added as he placed a large band aid over the hole he had just drilled in Willie's hip.  "The cells would have shown up in your lab work by now if there was any cause for concern."
We relaxed at this news.
"You're going to be fine." He reassured.  "You've done really well and your labs have been looking fantastic."
As if on cue, the nurse returned with Willie's labs for that day.  All of his counts improved and he is almost normal on all of his levels. 
"He won't be needing that PICC line anymore."  Lenny said to the nurse.  "You can go ahead and take it out."
She had already planned on doing this and had all the equipment ready so she got right to work.  The process of taking a PICC line out is much easier than putting it in.  All she had to do was snip the stick that held it in place and pull the 18 inch line out. 
Willie complimented Lenny on his biopsy skills as the nurse pulled his line out.
"I guess I'm better at it than others since I've had 9 biopsies myself and I know how it feels."
"Did you have cancer?" I asked, in total shock.
He looked at the floor and laughed, looking a little ashamed.
"No, I didn't." He said. "I was in medical school in the 80's and back then they would pay people to donate bone marrow for study purposes so I did it as often as they would let me."
We laughed at that.  It's just like selling plasma to pay rent, but to the extreme.
"I had a lot of bad biopsies that were really painful and very few good ones, but I learned from them how I could do them better."
"I'm glad you did." Willie laughed.  "What did they pay you for them?"
"200 a pop." Lenny said, looking sheepish.
"I've had 7 and no one has paid me a dime!" Willie joked.
"And then we ask you to pay us!" Lenny added. and we laughed.
By this time the nurse had finished pulling the line and had placed a large bandage over the hole.
"Looks like your free!" Lenny said, helping Willie to his feet.  "We'll see you next week to check in.  Now all you have to do is go home and have a happy birthday!"
We thanked him and had the nurse take a picture of us together.  He has been such a blessing to us and we are so grateful to him.
We left the cancer center and walked over to the main hospital to see our friend Casey.  He is in the F ground unit which is where Willie was admitted for a month last year when he was first diagnosed.  It was strange to walk back onto the unit and think about everything that has happened since we were there.
 It was on that floor that the doctors first mentioned the possibility of Willie needing a bone marrow transplant.  It was there that we cried after hearing this news and refused to consider such a risky procedure.  It was there that we began facing the fear and relentless anxiety that comes along with cancer.  But it was also there that we learned that there is an abundance of peace to be found in times of trial. That unit represents the beginning of a journey that we are nearing the end of and it was an appropriate time to come full circle in our path.
Casey has been receiving chemo and was not doing well and had a high fever when we got there.  He had been out of it all day and was sleeping when we arrived.  We talked with his parents for a while then Casey started to come around.  He was still out of it so we didn't stay long.  Those are the moments that I wish no one ever had to go through.  We've been through it with Willie and it never gets any easier.  Our thoughts and prayers go out to that dear family who we have grown to love. 

Yesterday was Willie's 34th birthday.  33 was the most challenging year of either of our lives, but also the most rewarding.  It is a relief to move past 33 and onto a brighter future.  We celebrated with smoked ribs and mashed potatoes at his parent's house.  Some family and friends came over and we enjoyed the evening together.  I was overwhelmed with gratitude as we sang "happy birthday" to him.  I will never again take the singing of that song for granted. 
Willie's 33rd year is one I will forever be grateful for, but never want to repeat.
It taught me how to life deeply.
Laugh fully.
Love with reckless abandon.
And hope beyond anything that makes sense.
It is that hope that will keep us going for 33 more years then 33 more after that! 
Happy Birthday Willie!
I love you!

Day 82. Happy Easter!

Happy Easter to all! 
I love this day.
Easter this year is incredibly poignant to me.  We celebrate this holiday to remember that the Savior Jesus Christ rose from the grave.  His sacrifice made it possible for each and every one of us to overcome any trial or challenge we may have such as death, pain, sickness, fear or a broken heart.  It also brings us hope that we can all rise from our personal darkness into the light of a brighter day.
I feel as if Willie and I are emerging from our personal tomb.  I am so grateful for the improvements he continues to make each day and look forward to the new life we will build together. 
His clinic appointments last week were uneventful which is how we like them!  Lenny had some time off so we had Tammy who we met during the first week of radiation and haven't seen since Willie left the hospital.  She couldn't believe how good he looks.  She just kept staring at him and shaking her head in disbelief.
"You've done really really well." She said and patted him on the back.  "I remember that first week when you couldn't stop throwing up!"
We assured her that we remembered that awful week too!  Thank goodness that was short lived!
She agreed with our plan to go home next week and walked us through the next steps.  Next Tuesday Willie will have a bone marrow biopsy and have his PICC line pulled from him arm.  We get to move home for good on Wednesday, which is his birthday!  After that we will check in at the clinic once a week or every other week until May 1st when we meet with Dr. Laport who is his transplant doctor.  She will make all the plans from there regarding his medication and appointments.
He is still on steroids, but the dose is down to 30 mgs and his blood sugars are not nearly as high.  He will stay on those for a good 6 months as they slowly taper down the dose.  If the skin rash or gut issues return at any time, he will have to up the dose again.  The steroids are keeping his immune system suppressed enough to keep the donor cells from attacking his own.  The hope is that over time his cells will be able to live in harmony with the new cells without needing medication.
He is also taking Prograf to suppress his immune system and discourage GVHD.  Lenny said to plan on continuing this pill for another 6 months to a year.  Willie's immune system will be suppressed by these meds as long as he's on them so we are hoping it wont be for too long.
Our friend Casey, who got a transplant the same day as Willie, got some bad news last week that his cancer is back.  We have been thinking of him and his family daily and keeping them in our prayers.  He was re-admitted to the cancer unit on Friday to start chemo again.  We have hope burning like a forest fire for Casey because his hope is our hope.
We have been so blessed with Willie's healing, but also know that everything could change in a moment.  I suppose that is true for everyone on the planet, but the cancer world heightens one's awareness of mortality.
As for now, we move forward with our heads held high and our hearts full of gratitude and hope.  We are still at the beginning of Willie's healing and have a long road ahead, but hopefully that hard part is over.  The mortality rate for a bone marrow transplant is 40%, which means one out of every three transplant patients doesn't make it to the 5 year mark.  I hate thinking of these stats because we have made too many friends now who have had transplants and I refuse to believe that any of them won't make it.  I especially refuse to believe that we will be one of those stats.
That is simply unacceptable.
We have been told that this 5 year point is when they can say you are "cured."  Until that time, doctors hesitate to declare anything.  These are things we don't like to think about and rarely speak of, but it lingers in both of our minds.
I asked Willie the other day if he will ever be able to live without the fear of a relapse being a constant thought. He said he doesn't know about that and only time will tell.  I know it is something on my mind constantly even though I try to deny it.  I don't see a place in our future when the fear of relapse will disappear.  There will never be a time when he will have a cold or flu that we won't fear it is something more. 
Our life will never been the same after this, but I don't see that as a bad thing at all.
Because our life will be better.
We have learned so much through this trial of fire.  It has molded us into better people, changed our outlooks and welded our marriage into an unbreakable bond.
I can honestly say I am the happiest now than I've ever been, not because our circumstances are perfect, but because my definition of happiness has changed.
To me, that is a miracle.

I hope you all have a lovely Easter filled with peace and hope for a brighter tomorrow.  There is a light at the end of the tunnel for all of us!

Day 70. Ten Weeks Post Transplant!

Scout likes her new ball with teeth printed on it! 

The girls got two new toys this weekend!

This past week has been really busy.  Willie has been feeling really good and we have been working on getting things going again for his business.  We have also been working on taxes for the shop which turned out to be quite the task! 
Last weekend was Will's Dad's birthday and we got the OK to go home and celebrate.  It was so good to be home.  Willie felt good all weekend and got to enjoy some delicious meals at his mom's house.  His blood sugars continue to be an issue, but they aren't nearly as high since he dropped the steroid dose to 40 mg last Friday.
The next step in our journey is the dreaded bone marrow biopsy that is usually given on day 90.  We talked with Lenny about this at our visit last Friday and it has been on both of our minds since. Last night I dreamed that Lenny came to our apartment to do the biopsy while I slept on the couch the whole time. I woke up laughing at the way my mind turned that anxiety into a dream.
Our visit to the cancer center today went really well.  Lenny came in with his usual smile and reported that all of Willie's blood counts look fantastic.  His red count came up to 12.2 which is almost normal!  Everything else is within normal ranges and he is really happy with how Willie is improving.
"We need to pick a date for your bone marrow biopsy." He said, with an upbeat arm motion.
"Will you be doing it?" Willie asked.
"If you want me to." Lenny replied, looking a bit touched by the honor.
"I dreamed last night that you came to our apartment to do the biopsy." I said.
Lenny threw his head back and laughed.  He has a contagious, high pitched chuckle that makes us laugh every time we hear it.
"Now there's a business idea." He said.  "Boutique bone marrow biopsies!"
He adjusted his face masked and wiped a laughter tear from his eye.
"So what day do you want to do it?' He said, returning to his regular business tone.
"My birthday is April 3rd and we would like to be home for that if possible." Willie ventured.
"What day will that be after transplant." Lenny asked, as he took a seat across from Willie.
"Day 85." Willie quickly replied.  He has had that day memorized since he received the transplant.
"Day 85." Lenny repeated, slowly.  "Well I don't have a problem with you going home then if everything keeps going well.  I'll schedule the biopsy for the 2nd.  We'll take your picc line out after the biopsy and let you go home."
His eyes crinkled below the yellow mask suggesting a broad smile underneath.
I can't believe the day to go home is arriving so quickly.
We are excited!
And anxious.
At the same time.
I suppose it is natural to have some level of anxiety about returning home after a life altering event like a bone marrow transplant.  We have become accustomed to the life that cancer has scheduled for us and it is going to be weird to adjust to living without constant doctor appointments, medications and lab counts.  Willie still has a lot of healing to do so those things are not going to disappear completely, but his appointments will be weekly then monthly and in time he should be able to wean off of all medication.  There is still a road of recovery ahead of us, but it is nothing compared to where we have been!
We are so grateful for the prayers and faith that has brought us this far.  There has never been a point in this journey where we have had to walk alone and we are most grateful for the love and support we have received.
Here's to more good days ahead!

Day 64.

If happiness could be quantified in a sound it would be that of the crashing ocean waves.  There is nothing that an afternoon near the water can't fix!  Willie has been having a series of good days and we have been taking full advantage of them by taking day trips to the water.  On Monday we took a 45 minute drive to Half Moon Bay and spent a few hours basking near the water and enjoying the crash of the waves. 
Willie got some curious stares from others as he walked down the beach in his industrial grade filter mask, but we didn't mind.  There wasn't a cloud in the sky and the wind was cool enough to keep us moving down the sand.  I stood and watched Willie for a moment as he waited for the waves to crash on the sand.  He would stand his ground as the water lapped dangerously close to his toes before dancing away just before the tide touches his shoes.  It was a moment of pure and simple happiness, like that of a child. 
These are the moments I am most thankful for; the moments when everything in the world is right.

His appointment at the cancer center yesterday was perhaps the best one we've ever had.  Lenny was out on his rare day off so we saw Dr. Kamal who is a student in his last year of fellowship.  He was doing his rotation in the hospital when Willie had the transplant so it was good to see him in the clinic now.  He couldn't believe how much better Willie looks since he last saw him in the hospital and was happy with all of his lab work.  The elevated white blood cell count returned to normal which proves that it was inflated from the C-Diff infection.  His blood sugars have improved a lot since he dropped the steroid dose so the threat of insulin has been removed and his stomach is feeling 1000000% better now that the C-Diff is being treated.  It's amazing what killing a superbug can do for a guy!

Today we took a ride up to Benecia and walked around the waterfront.  We wandered through the cute shops that line the downtown strip and pet too many dogs to count.  It seems everyone in Benecia has a dog as an accessory and we got to see all kinds today from Chihuahuas to Labradoodles. 
There isn't a breed of dog that Willie doesn't like and we had a good time talking to the owners and learning about their dogs.  It sounds silly to be so refreshed by a day of petting strange dogs, but it was a recharge that we both needed.  We miss our dog desperately and count the days until we can be home for good, complaining about how badly she sheds!

Day 60- C. Diff....Again!

Yesterday was a bummer day.  I woke up with a terrible feeling that something was going to go wrong.  I've had this feeling a handful of times since Will's diagnosis and most times he has ended up hospitalized.  I'm most grateful for these impressions because they encourage us to act. 
We went to the cancer center and his lab draw showed his white blood cell count had shot to 19.2.  Normal count is below 11 so we were concerned. 
Lenny, however, wasn't worried at all.  He said it is a side effect of the steroids and is to be expected.  Willie has been having terrible gut pains since Wednesday night and Lenny thought it is the GVHD acting up.
"Can you please test him for C. Diff?" I asked.  It was a thought that came to my head a few days ago
 that I haven't been able to shake.
"I don't think it's C. Diff." He said with a slow shake of the head. "He doesn't have any of the symptoms.  Unfortunately this is just part of the GVHD and we're seeing now that it may be worse than we thought. We also can't decrease the steroids today like we discussed until this is taken care of."
"I just don't think it is GVHD." I debated.  "Last time he had C. Diff he didn't have the classic symptoms and I feel like that is the problem again."
He stared me down for a moment before slowly nodding.
"We can test his stool if you want, but I don't think it's the problem."
I thanked him and we moved on to discuss diet to relieve his gut pain.  He suggest moving Willie to BRAT diet which is comprised of bananas, rice, applesauce and toast.
"I can't do that." I said, trying not to sound belligerent. "If I put him on that diet his blood sugar will shoot through the roof."
"Oh yeah." Lenny said, scratching his head. "I'll have the dietitian come in and talk to you then and you guys can figure it out."
It is not Lenny's job to know the inner workings of nutrition so referring to a dietitian is exactly what he should do, but I was annoyed by the suggestion.  I have the same schooling as any dietitian with one mild difference: I couldn't afford to do a 6 month, non paid internship after I graduated to qualify for the dietitian exam.  Perhaps my annoyance is motivated by pride since I am a certified nutritionist, but I have a firm grasp on my husband's diet and don't need to be told what to do by a government trained diet counselor who knows nothing more than the food pyramid.
The dietitian that came to see us was the same girl who had visited us when we were inpatient.  That previous visit had gone poorly since she spent the entire time trying to tell me that there is no such things as powdered pea protein which does, in fact, exist.  I had a bad taste in my mouth after that exchange so I was less than excited to see her yesterday.
She came in with a fury and began drilling me for what Willie is eating.  I responded in dietitian-speak, reporting his meals in terms of how many carbs, fats, and proteins comprised the meal instead of the actual food.  She wrote down the items feverishly and pulled out a calculator.
"He is not eating enough calories." She reported.
"I'm fully aware of that." I replied.  "We are doing what we can and his calorie intake is improving daily."
"He needs to start drinking the high calorie shake." She said.  This is the dietitians solution for everything.  I learned this in the years I ran the nutrition department at a skilled nursing facility.  They are trained to get calories into their patients in the quickest and easiest manner which involves forcing a patient to drink a high calorie sludge that  is made from corn syrup and soy bean oil.  The main ingredients are toxic to the body and the last thing that an immune compromise patient should be eating.
"The shake has far too many carbs." I replied.
"And what's the problem with that?" She shot back.
"We're trying to control his blood sugars with diet and that means carb control." I explained.
"That's why there is insulin.  He will start taking the shots today and then he can eat a BRAT diet and drink the high calorie shakes."
I have a problem with everything about that statement.  I see no reason to give my husband shots of insulin just so he can eat a high carb diet. 
That to me, is insanity.
"We are not interested in using insulin." I explained. "His family has a history of diabetes and he is high risk for developing it."
She made a dramatic display of grabbing her hair with both hands and rolling her eyes toward the ceiling.
"Insulin does not cause diabetes." She yelled.
We stared back at her, speechless at her childish display.
"I never said that it does." I said after she calmed down a bit. "But injecting insulin can damage the beta cells of the pancreas which causes the pancreas to stop producing insulin like it should which leads to diabetes."
Now she was speechless.
I doubt she knows any of that.
"You don't understand how insulin works." She retorted. "It is used to help lower his sugars so he can eat a high carb diet."
I could see the debate was futile.  There is no need for him to eat a high carb diet.  That is western medicine thinking and everything I learned in college about nutrition as well. It has only been through my own study and practice that I have learned the follies of the Standard American Diet which appropriately can be abbreviated as SAD.  I can't blame the dietitian for preaching what she learned in school, but I can blame her for treating us like we were dumb.
"Fine," I said. "You can go ahead and give us the insulin and I'll use it if I feel it is necessary."
She nodded and smiled.  "That is the right thing to do."
She left the room and I fell apart.
"I can't do this anymore." I cried to Willie. "I feel like they are pushing us into a corner and forcing insulin on you and I can't handle it.  I refuse to give you shots in the belly multiple times a day.  Its' something I just can't do."
"You can't be upset about this because I am upset about this and only one of us gets to be upset at a time." Willie replied and I couldn't help but laugh at his reasoning.
"I'm sorry, baby." I said, wiping at tears. "I just felt so attacked by her."
"She did attack us." He validated me. "But you know what you're doing so let's keep doing what we're doing and see what happens.  I'll eat whatever I have to, I just want to feel better."
He held his gut and rolled over, obviously in pain. 
I hated that he had to console me when I should have consoled him.
We left the cancer center around 3:30 PM and got a phone call from Lenny at 5 PM.
"Well you've done it again." He said.  "He has C. Diff, just like you thought.  I don't know how you do it. I need to just give you a job here." He laughed through the phone and I sighed in response.
"What a relief." I said.
"Yes, it is.  I agree with you now that it is not GVHD and that his gut pain is from the infection.  You can go ahead and lower his steroid dose and we'll start antibiotics for the C Diff tonight."
I'm am so grateful for this tender mercy. I don't take any credit for finding this infection.  All the credit goes to a loving God who has guided our footsteps and inspired us along this curious path.
I got Willie the antibiotic last night and he took the pill with a smile.
"The Flagyl is going to work." He said.  "I feel better already!"
Of course, he was joking, but he did actually feel better last night and is having a much better morning today. I hope this is the beginning of an official climb to the top.  We're tired of this up and down stuff!
Happy Weekend to All!

Day 57. Neither Up Nor Down.

I'm loving this pic I took the other day!

When I was young we would sing a song called the "Duke of York" that tells of how the Duke  marched 10,000 men up a hill and down again.  The chorus of the song says:
When you're up your up
and when you're down your down
but when you're only half way up
you're neither up nor down.

I thought of that song today when I reflected of the events of the past few weeks.  It seems we have been hanging in the limbo of being neither up nor down, but I've come to realize it is a fine place to be.
We returned to the cancer center yesterday for our regular appointment.  Willie's labs look awesome and Lenny was happy to see that the rash has resolved.  I reported that I am unhappy with his blood sugar spikes which we have been able to control with diet and Lenny applauded us.
"All of my other patients have to be on insulin so you guys are doing something right. We will decrease his dose on Friday so it won't be like this forever." He said.
"I'll let you know our secret." I divulged and he leaned in close. "I give him his prednisone with a smoothie made with full fat coconut milk."
He hovered inches from me as a look of confusion crossed his face.
"And how does that help?" He asked.
It was the exact question one should never ask nutrition nerd like myself.  I gave him the long winded answer about how blood sugar spikes can be dramatically decreased by adding fat to a meal.  He listened intently to my explanation.
"Wow!" He said. "That is going to be so helpful for my other patients." 
We agreed.  I hope he passes the useful tip on.
"So when can I get back in the gym?" Willie asked, as Lenny listened to his lungs with a stethoscope.
"You must be feeling better!" He replied. "That's the first time you've ever asked about doing anything active."
"I'm feeling a lot better and I want to start getting my muscle back." Willie replied.
"Unfortunately, you can't got back to the gym for a while." Lenny said with a sad shake of his head. "There's just too many bacterial risks there.  You can work out in the apartment though, maybe bench press the couch or the bed."
We laughed at that.
He finished his exam and confirmed our appointment on Friday. 
"Next time we see you Willie will bench press you." I said, as we got up to leave.
"Maybe we can settle on an arm wrestle." He said with a smile. "But I don't think I'd stand a chance."
He patted Willie on the back and said goodbye.
We do like our Lenny!



Because what electronics store doesn't have a train inside?

We had a fantastic day today.  Willie felt good enough to run some errands with me.  We went to Fry's Electronics which was an adventure in itself.  The store is decorated in the style of a western saloon,  It was quite the experience to look at laptops and computers while surrounded by bales of hay.  The store was huge and filled with random items.  Never before have I been to a store where you can buy a pair of pajama jeans from one aisle and a computer motherboard on the next.  We didn't buy anything, but had a great time looking!
He had a good lunch and dinner and has had no nausea today.  At the risk of jinxing ourselves I think we may have graduated from being
"neither up nor down" to being "up!"

Day 54.

Last time I posted I praised the steroids that saved the day; today I hate them! 
Everything was going along fine until Thursday afternoon when Willie broke out into a full body rash.  This is one of the warning signs of graft versus host disease and they have been watching his skin since transplant.  It was obvious now that Lenny was right about Willie having GVHD even though the scope results were negative.
I called the cancer center to see what we should do and nearly fell to pieces when they said Lenny had a day off.  We don't expect our doctors to have a life outside of our needs!  He has been there every time we go so we decided it was probably OK for him to have day off once a month...
I talked to the doctor who was filling in for Lenny, but she didn't know our case and just said to put some anti-itch cream on the rash and check in tomorrow. We were hoping to start the steroid that day, but it seemed we would have to wait.
The rash was still raging when we went to the cancer center on Friday.  The nurse drew labs and reported that Lenny was still out so we would see someone else.  Again, we nearly fell to pieces.  It's funny how easy it is to become attached to one doctor!
One of our favorite nurses, Sandy, came by to say hello.  She is quite the talker and we always enjoy hearing her stories.  We showed her Willie's rash and smiled.
"Well there she is." She said brightly.  "Looks like your donor is showing up!"
I appreciate her bubbly attitude about a dismal rash.  She assured us that these rashes are common and it just tells us that his body has recognized the cells he received are not his own.

Willie was sitting in a chair for the first time and we were really hoping to impress Lenny with his progress, even if it involved a full body rash.  A few minutes later Lenny came around the corner and we nearly shouted our hello.
"It's good to see you in a chair!" He said to Willie.
"We thought you had the day off." Willie returned.
"I did yesterday." He confirmed.
"Only one day off for you!" Willie replied and we all laughed.
"So what's new?" Lenny asked.
Willie lifted his shirt in response.
"Well, there it is." He smiled.  "This confirms our suspicion of GVHD."
He wheeled a computer over and started typing rapid notes.
"We'll hit you with an IV dose of prednisone today and then put you are a large oral dose.  This will make you even more immune compromised so we'll need to add another anti-fungal medication."
He looked at us to make sure we were keeping up and we nodded in response.
His fingers flew over the keyboard at a dizzying speed as he continued to make changes to Willie's meds.
"The steroids will probably make him diabetic so we'll get you a blood sugar meter and some insulin." He said casually as if it was no big deal.
"Hang on." I stopped him. "I'm not interested in giving him insulin shots, can we do a lower dose on the steroids?"
"Unfortunately not." He shook his head. "Now that we know it is GVHD we need to give him the highest dose to attack it.  We can't afford to let it get worse."
We nodded in agreement, but my anxiety was reaching the limit.
"This is your field Missy." He stopped typing and looked at me. "You know how to control his blood sugars.  I won't order the insulin and if you find that his sugars are in the 300 and 400 range then I'll just call in a flex pen for you and you can pick it up."
It was the only compromise we could reach so I agreed.  The last thing I want to do is start injecting Willie with insulin.
He gave him the steroid and we went on our merry way.  Later that night his blood sugar shot to 300 so I forced him to drink some water and go for a walk.  That pulled his numbers down to 220 and we went to bed.  On Saturday his sugars were up and down all day.  I have worked myself into an anxious mess.  I know if I had the insulin pen on hand I would have the security of knowing that if his sugars shoot too high, we'd have a back up.  Instead, I control his carb consumption with an iron fist and poke his finger multiple times a day to check his sugar.  That is the part he is least excited about.
It's ironic that after all we've been through, a simple finger stick to check his blood sugar is pushing us both over the edge.
Willie is having a rough day today and threw up this morning.  There is definitely something happening in his gut, and we can only hope it's a good thing.
These are the though moments that we have to go through to get to a brighter future.
Keep the prayers coming that he will respond well to the steroids!

Happy Weekend!

Day 49. Half Way There!

The steroids that saved the day!

Willie is doing 100% better!  The steroids did the trick and he has been feeling good since Sunday.  Yesterday he was feeling so good, we took a trip to his favorite gun store down the road and looked around.  His appetite has increased and he actually gained 1 pound! 
He was looking forward to sitting in a chair for his appointment today to impress Dr. Lenny.  This is the first time he has felt good enough to be in the common area and we couldn't wait to hear what Lenny would say about it. 
It was not meant to be though.
When we arrived at the cancer center they ushered us quickly into the back isolation area like they did when he had C-Diff.  We told the nurse that he did not have anything contagious and requested a chair and she insisted that he had been sneezing and coughing.
"I saw in his notes that they did a nasal swab last week." She said as she escorted us into a private room.
"Then you also saw that the results were negative." I corrected.
"Yes, they were negative, but if he is coughing and sneezing then we can't risk him sitting in a chair."
Willie and I looked at each other and rolled our eyes.  This is not the first time they have confused his symptoms with someone else so I'm sure they were taking caution for someone elses's cold. 
It's too ironic that the one time he was actually feeling well enough to sit in a chair, the nurse wouldn't allow it!
Lenny came with the results from the blood work a short 45 minutes after we arrived.
"I see you're still in bed, but at least your sitting up today!" He said as his usual greeting.
"I asked for a chair, but they think I'm contagious." Willie insisted.
Lenny laughed and assured us that he would fix the status in the computer.
We filled him in on Willie's good weekend and Lenny smiled with satisfaction.
"The results are still not back on the pathology of the scope, but the fact that the steroids fixed everything means that we still can't rule out GVHD."
"What do we do now?" I asked.
"Now we wait for the pathology results and see how he feels." It wasn't exactly a definative answer, but we would take it.
"You're labs are perfect today so there are no concerns there. You're looking good man!" He said as he opened the door to leave.  He paused, then leaned in and gave Willie a fist bump before leaving.
We definitely like Lenny.
Willie had a great afternoon with no nausea.  He ate a good lunch and is requesting tacos for dinner.  I know he's feeling better because he has started making comments about how good the food on TV commercials look.  He even said McDonald's fish bites looked good, which to me, look disgusting!
I got a phone call from Lenny about 6 PM.
"I just got the pathology back from the scope and everything is negative." He said.
"Hoooray!" I shouted into the phone.
The other end was silent.
"That is a good thing, right?" I asked because of his silence.
"It is a good thing." He assured. "But we still can't rule out GVHD.  We usually diagnose based on symptoms and the pathology backs us up.  If we find that the symptoms return and he starts feeling bad again then we will move forward with GVHD treatment."
I was quiet for a moment as I processed this.
I'm so sick of good news not really being all the good.
"So what happens if he feels good for a few weeks then..."
"Starts feeling bad again?" Lenny finished my thought. "That won't happen.  If it is really GVHD then he will start feeling bad again within the week.  We'll check in at your Friday appointment and see how things are going and just take it day by day from there."
I sighed and agreed.  I find it hard to relax when there is still a thread of GVHD on the table.
"Have you ever seen a case where someone improves from taking a few doses of steroids and doesn't need any more after that?" I asked hopefully.
"Yes, I see it all the time.  All this started when he got the C-Diff so there is a possibility that the inflammation was from the infection and the steroids fixed that.  I personally think that is what has happened, and that will be our best case scenario.  Only time will tell."
"We'll hope for the best case scenario!" I said brightly and he laughed in response.
"Yes we will.  See you on Friday."
I hung up and reported the news to Willie who was relieved-ish.  I don't think either of us will be totally relieved until we see what the coming days bring. 
In the meantime, we'll pray for more good days!

Day 46. Back to the Graft....

Yesterday was a rough day.  Willie woke up feeling nauseous and dry heaved a few times before we left for the cancer center.  He wanted to sit in a chair in the common area to prove to Dr. Lenny that he was feeling well, but the nausea got the best of him and he chose a bed. 
"Still in bed I see." Lenny said as he entered the room.  He wasn't smiling as broadly and it felt like bad news was forthcoming.
He asked how the scope went and we told him the good news from the Endoscopy doctor.
"I called the pathologist a few minutes ago and he said he hasn't received tissue samples for Willie yet. We'll still wait and see if there is some kind of bacterial infection, but I think it's time we treat this like Graft Versus Host Disease."
We stared at him in shock.
"But the doctor said his gut looked good." I rebutted.
"And that is good." Lenny agreed. "But he has far too many symptoms for me to say it isn't GVHD.  I think what we've got here is a really mild case that we've caught early before it has damaged the gut which is a really good thing."
He smiled after saying that, but we didn't return the sentiment.  It was as if he had taken all of our high hopes from the previous day and incinerated them in front of us.
"So what does it mean moving forward?" I asked.
"We're going to give him a steroid treatment today and tomorrow.  He should start feeling good this weekend which is a really good thing, but it will also indicate to us that it is GVHD."  He had removed his mask at this point and was staring from Willie to me to make sure we understood what he was saying.
"And what happens after this weekend?" I needed all the details.
"When you come back on Tuesday we'll see if the steroids helped.  The test results from the scope should be back by then so we can see if it is simply a gut infection, there is a chance it could just be a bug."
We smiled at that.
We are hopeless optimists.
"I just want to let you know that I don't think it's an infection though." He said, bringing us back down. "The clinical presentation is identical to GVHD so I need to treat is like that."
What a bummer!
We sat in silence for a moment until I could formulate the scrambling thoughts in my head into a question.
"And what does this mean for our future?  Is this a set back?"
Lenny broke into a broad smile and reached out to pat Willie on the back.
"Not at all." He said, reassuringly.  "This is all part of the game and it's a good thing we're catching it early.  If it is GVHD it is a very mild case and we'll treat it with steroids.  You'll still get out of here by day 90."
We both perked up at that.  It was the first time any doctor had hinted at the idea of getting out before the 100 day mark, although we've heard plenty of first hand accounts of people being released in around day 80.
"Have a good weekend." He said, slapping Willie on the back. "You're going to be feeling so much better."
Willie nodded in response and Lenny left.
Neither of us said a word.
The nurse gave Willie a dose of the big-dog IV nausea meds he had during radiation treatment, and we hoped for a better afternoon. 
The IV didn't change anything and he was throwing up as we left the cancer center and dry heaved all the way home.  When we got back to the apartment he slept for a while then woke up and ate something and took the steroid.
I think we were both expecting something magical to happen immediately, but we were sorely disappointed. 
He was still nauseous so he laid down to take a nap and I sat on the couch staring at the wall.  It's days like these that I want to forget.  We had allowed our hopes to soar so high from the endoscopy results that I had never expected to hear the GVHD threat.  I know that it is not necessarily bad news, but it definitely disappointing news and I hadn't prepared myself for it.  I know in my heart that everything will work out and in comparison to many of the other bone marrow transplant patients Willie is doing well, but the roller coaster of fear that we ride can sometimes become exhausting.  It's days like this that make me want to raise my hands in the air and shout "I'm done now, let me off the ride."
We are both grateful to have Lenny along for the ride though.  Willie was feeling better last night and we talked about the discussion with the doctor.  We agree that it is a bummer, but we will do whatever we need to do to get him feeling better.  We are blessed to have such an astute doctor as we have in Lenny to take such excellent care of Willie.
On a brighter note, Willie is feeling better today.  He went for a walk in the courtyard and is currently playing baseball on his PlayStation. 
Thank you all for the continued prayers and words of support. 
Happy weekend to all!
See you Tuesday.
(hopefully with better news!)

The Forgettable Stomach Scoping

First of all, thank you all for the thoughts and prayers for Willie's scope today.  We have learned, yet again, that the fear of something is almost always worse than the reality. 

The day started early with a 5:45 AM alarm ring.  Willie already warned me last night that he was going to be grumpy today so I was prepared for the groans and grumbles.  We arrived at Stanford hospital at 7:05 and took a side corridor, down a rusty looking escalator and into the basement of the building.  It was creepy at best, but I was pleasantly surprised when the escalator dropped us in front of a glass set of doors with a beautiful waiting area behind it.  A large sign on the back wall read "Stanford Endoscopy" and the lobby was decorated in classic Stanford fashion with marble counter tops and trendy wall colors.  The chairs were plush and comfortable and we took a seat while they checked him in.  A large computer monitor on the wall listed a series of numbers next to which a status was posted.  The receptionist handed me a card with Willie's reference number on it, then a nurse took him back. 
I said goodbye and reminded him that it would be quick and easy.  I myself have had a stomach scope years ago and it was nothing short of uneventful.  I told Willie yesterday that when I got the scope done it was so quick and easy that when I woke up from the anesthetic I asked the doctor when he was going to start!  He smiled at that, but I could tell he was anxious about the procedure and it set me on edge.
I watched his number on the monitor as it changed from "Patient in building" to "Patient in Prep" then "Patient in OR."
The fact that they had him listed in the operating room was unsettling to me.  Why couldn't they list him as "in procedure" or "in process."?
I watched an older couple across the aisle as they tried to busy themselves with books and magazines.  The man would read for 30 seconds then intently watch the status board for 2 minutes until his wife would smack him on the arm and tell him to relax.  I didn't even pretend to be interested in anything but the status board.  I sat and stared at it like I was watching an exciting action film. 
The status above Willie's number changed to "in recovery" and the older gentlemen shot out of his chair and clapped his hands.
"She's in recovery!" He announced to his wife  and everyone in the waiting room.  She pulled him back into his chair scolded him for being so loud..  He looked around the room with a smile so big, you would have thought he had won the lottery.  I looked over at him and we made eye contact and smiled. 
I knew how he felt.
At 8:30 Willie's status changed to "in recovery" and I sighed in relief.  I wanted to jump up and clap like my older friend, but I'm sure his wife would have scolded me too.
A few minutes later a nurse called me into the back where Willie was recovering.  It was set up identically to the surgery center comprised of a long hall of compartments holding beds with groggy patients trying to wake up from surgery.  Willie was in the first room, fast asleep.
"He's really sleepy and has been trying to come out of the anesthesia for 15 minutes." The nurse said as she took his vital signs "I have to watch him for 15 minutes more then you guys can go."
I sat next to Willie and rubbed his arm.  His eyes fluttered as he tried to open them, but they never made it all the way open.
"Hey baby." He mumbled through his mask.  "I don't remember anything."
I smiled at his hello. 
"That must mean it went well." I said, but he was already asleep again.
The nurse returned in 15 minutes as promised and took another set of vital signs.  Everything was normal, except the fact that he was sleeping like a bear in hibernation.
"Willie." The nurse practically yelled at him as she rubbed his shoulder "You need to wake up now and show me that you are stable to sit and stand."
His eyes fluttered open again and he looked at the nurse and me with surprise, as if we had just arrived.
"Can I get your some water?" She asked and he nodded.
She went to get him water and he drifted off to sleep again.
I could see this was not going to be an easy venture to wake him up.
She returned with the water and positioned the straw in his mouth then commanded him to drink.  He cracked his eyes a fraction as he sipped.  She then placed the cup in his hand and informed us that the doctor who did the scope would be coming by to see us then we could go.
Willie nodded in reply then began snoring 10 seconds later.  He nearly dropped the cup of water and I hurried to grab it.  My quick motions woke him up.
"Hey baby." He said, this time his mask was off. "I don't remember anything."
I laughed at the repeat conversation, but responded the same as I had before.
"That must mean it went well." I said.
"I guess so." He said.  "I'm sleepy."
He closed his eyes and fell asleep again to prove it.
A few minute later a tall, Eastern Indian man in his mid 50's pushed back the curtain.  He was wearing a classy blue shirt with a power-colored red tie and khaki pants.  I found it hard to believe that he had just performed a stomach scope in that outfit, but he seemed to be a seasoned doctor who could do stomach scopes in his sleep. 
Willie opened his eyes and looked at him as the dr introduced himself.
"I have good news for you." The dr said, flashing a brilliant white smile, "I didn't see anything in your gut that screams GVHD.  There were no areas of redness or inflammation so that is very good thing.  There were particles of food left in your stomach which is caused by what I like to call a 'lazy stomach.'"
He looked at Willie as he said this and watched as he sleepily nodded in reply.
"There should not have been any food left in your stomach so that tells me you are digesting slowly." He continued. "This can easily cause nausea and vomiting and it can be from any one of the medications you are taking.  I will refer you to your oncologist to discuss medication, but I don't see any cause for concern.  We will still run the lab reports on the tissue samples and let you know what we find."
I had a million questions to ask him, but he was obviously in a hurry so we accepted the good news with thanks and he left.
I heaved a huge sigh of relief and looked over at Willie who was sleeping again. 
That's when the tears came. 
I was simply and utterly, overwhelmingly, grateful.
A few minutes later Willie opened his eyes and looked at me.
"Hey baby."  He said as it if was the first time seeing me all day. "I don't remember anything."
I laughed out loud this time.
"That's what I've heard." I replied "Do you remember the doctor coming in?" I asked.
He looked confused. "Did he come by?"
"You were looking at him the whole time!" I informed him.
He looked at the ceiling as if trying to find the memory.  "I don't remember anything."
"So I've heard." I said, then filled him in on the good news from the doctor.
He smiled then closed his eyes again and was snoring a few seconds later.
The nurse returned about 10 minutes later and began removing the heart monitor and blood pressure cuff.  She kept coaxing Willie to sit up, but it was obvious he had no intention of going anywhere.
"I'll come back in 10 minutes." She said after several failed attempts "If you're not up then, I'm going to have to make you sit up."
Her threat may have been valid if he had heard it, but he was fast asleep.  I didn't want to be on the nurses bad side so I began prodding Willie and moving his arms and legs.  It was like trying to get a sleeping infant to walk. 
The task was impossible.
Just before the nurse returned, as threatened, he opened his eyes and focused on me.
"Hey baby." He said.  I was tempted to beat him to the punchline, but he got there before me.  "I don't remember anything."
He looked confused when I laughed at his statement, but I couldn't keep it in.
"We've got to get going." I urged.  "Let's go home and you can sleep there."
He smiled at that idea and let me help him sit up on the bed and get dressed.  I went to get the car and a transport person wheeled him outside.  He slept the entire ride home and when arrived at the apartment he was snoring again.  I shook him awake and helped him walk inside which looked something like helping a drunk man walk a plank.  He insisted on putting one foot in front of the other and walking heel to toe all the way inside.
He slept for 2 hours after we got home then woke up hungry.  I helped him sit at the bar and eat half a sandwich and a few bites of soup.  He was still really groggy, but needed to take his pills so I set them out for him.  There is one pill that makes him gag nearly every time he swallows it and today it got the better of him.  I heard him gag and turned from the sink just in time to see him projective vomit all over the counter.
There are the fun moments....!
He crawled back in bed after vomiting and is still sleeping now.  They had warned us that the anesthetic could make him nauseous today so he has every excuse to throw up all day if he wants.
But I hope he doesn't!
Here's to a better night and a good conversation with Lenny tomorrow.  I'm hoping this new info on his gut will help the oncology team make some decisions with his meds that will stop the nausea and allow him to eat.

Thanks again for the prayers!  We'll keep you posted!

Day 43

Yesterday marked 6 weeks post transplant.  Willie woke up feeling OK and ate a pretty good breakfast.  When we got to the cancer center he was blindsided by a wave of nausea and lost it all in the trash.  They ushered us into a private room and he laid down on the bed.  The nurse drew his blood then Dr. Lenny came in.
"What are you doing in bed?" He asked, but it was more of an accusation.
"I just got sick and threw up." Willie replied.
"So I take it your still nauseous then?" Lenny said as me made a note in the computer. 
"You know I haven't seen you sitting up in a chair at one appointment yet." He pointed out.  "You're too far in the game to still be feeling this sick.  I'm also concerned because you lost 4 more pounds over the weekend.  I'm going to order the stomach scope so we can see what's going on."
He is a tough love type of guy and we respond well to him.
Willie wasn't so sure about getting a scope done, but Lenny talked him through the process and explained that he will be asleep and small tube will be guided into his intestines to see what's going on.  They will be looking for areas of redness or inflammation.  If they see anything they will clip a small sample and test it.  There is a whole host of things that could be causing the problem.  Most simply would be finding a tummy bug of some sort that can easily be treated.  More complicated would be finding graft versus host disease in the gut which would require a heavy medication regiment.  We are hoping that they don't find this. 
Lenny was quick to remind us that even if it is GVHD in the gut, it is only temporary.  We will need to treat it now and he can try to wean of medications later. 
"At this point in your recovery you should be having more good days than bad days and I don't see that happening for you." He patted Willie on the shoulder as he said it.  "I know your Grandma's funeral is tomorrow, but I don't think it's the best idea for you to be going right now."
We nodded in agreement.  Willie has been nauseous all day long since Sunday and I was worried that we would have to tote the pink throw up bucket to the graveside service if we decided to go.  We agreed it was probably safer to stay here in Palo Alto, although we would much rather be at the service.
They scheduled the stomach scope for 7 AM tomorrow morning which means we will be up bright and early!  I'll keep you posted on what the results are.  In the mean time, we need all the prayers we can get that they will be able to find a solution to his tummy woes and that he will begin having some good days!

Day 38!

Today's appointment at the cancer center went really well.  We met with Lenny who is quickly becoming one of our favorite doctors.
"Your labs look excellent." He said as he came into the room wearing a yellow paper gown.  "I hear you have finished the antibiotic for the C-Diff so I don't think we need to wear these anymore." He motioned to the gown, but didn't remove it.
"I'm a little concerned because you've lost 10 pounds this week." He continued.  "Have you been eating?"
Willie reported that he has been trying to eat more, but still doesn't have much of an appetite.  He has had some nausea the past few days, but nothing that has stopped him from eating.
"I think I'm eating good." Willie told Lenny.  "We had tri-tip and baked potatoes last night and I felt like I ate alot."
Lenny's eyes grew wide above the yellow mask that hid his face. "You are doing really well if you are eating tri-tip." He confirmed with a laugh.
Lenny explained that the weight loss is a giant red flag to the doctors.  It is an early sign of graft versus host disease in the gut.  If the weight loss continues they will do a scope of Will's intestines to see what is going on.  If it turns out to be GVHD in the gut then he will be put on steroids and 2 additional immuno suppresent drugs. 
"That's somewhere we don't want to go if we can avoid it." Lenny said when he finished explaining the risks.  "If we have to put you on additional drugs, then the risk of infection nearly triples and you are at a greater risk for hospitalization."
We absolutely agree that we don't want to go there.
"If it were really GVHD then you wouldn't feel good enough to be eating steak, so I'm hoping we will see a stop in the weight loss at your next appointment." He pulled off his paper gown and threw it in the trash then wished us a happy weekend on his way out.
It was kind of dismal information, but it's good to know what to look out for.  We are praying that Willie will be able to eat more and start holding his weight and that we will be able to dodge GVHD.  Your prayers for this will help!
After our appointment we drove home to Willows.  Kona, the most amazing dog in the world, was so excited to see her dad.  This is only a short trip as we have to go back on Sunday, but I can already see that a little time at home with his dog is what Willie needs to speed the healing process.
Happy Weekend to all!  See you next week!