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!

Day 35.

I haven't been posting as much lately because there is very little to report.  Willie is still doing well so the clinic has changed his appointment from three times a week to only two. We now go on Tuesdays and Fridays for lab work and to check in.  His labs looked good today and he is on his last few days of the antibiotic for C-Diff which has helped immensely.

Yesterday was my 30th birthday.  I have officially joined the ranks of the old.  I am so grateful for the texts, phone calls, and messages I received from so many caring friends for my day.  I knew this year would be different since we are living in isolation and can't go out to celebrate, but it was probably the best birthday I've had yet.  I got to spend the day with my favorite person with no demands on my time. 
My parents sent a surprise package, but Willie wouldn't let me open the gifts until his arrived.  I was touched that he had even thought to order me something.  We waited all day with no sign of a package.  At 8 PM he had decided to give in and let me open the other gifts when a knock sounded at the door and a UPS man delivered the surprise package.  Enclosed were two adorable aprons; one printed with cupcakes and the other with produce.
"One apron for baking and the other for cooking." He explained with a smile.
He was obviously pleased with himself for thinking of something so clever, and I could only respond by putting both aprons on immediately.  It was a fabulous, unexpected gift and I absolutely loved it.

Today we got the sad news that Willie's grandma passed away.  She fell a few weeks ago then got pneumonia and steadily declined.  We were so sad to hear of her passing, but grateful that she is no longer suffering. 
It's days like today that make me realize we are all living on borrowed time.  It was such an honor to know Will's grandma for the few years since I have joined this family.  She was a spit fire woman with a warm laugh and enjoyed a long life up to the age of 89.  Some of us will not be allowed to borrow that much time. 
I am so grateful for the time I feel we are stealing with Willie.  It's not even a matter of borrowing time with him, we have flat out stolen it!  Without the advancements in modern medicine we would have lost him months ago. 
For this I am most grateful.
I am also most grateful for my faith that teaches me there is life after death.  This life is a time to learn through our experiences and trials.  Some of us have more trials than others and some people's circumstances seem unfair in comparison, but each of these experiences are opportunities to become acquainted with God.  If we turn to Him in our trials, he will always strengthen and direct us.
I know there is a God in heaven because I have felt his hand guiding us through this incredible journey.  I have seen doors open where they should have been closed and witnessed miracles in times of doubt.  I know that he loves each and every one of us with the love of a caring father and rejoices with us when we graduate from this life and on to the next.
Grandma earned her degree in life today and I know her celebration in heaven is a joyful and lively one.
We are talking with Will's doctors to see if he will be able to attend the memorial service.  It will depend on a number of factors, including him finishing this antibiotic and seeing how he does, but the Dr we talked to today seemed hopeful that he may be able to attend.  We will pray that everything will work out so he can be there!

Thank you all for your continual love and support. 
I'll update after our next clinic visit on Friday.

Day 30.

Our visit at the cancer center yesterday went well. We were there for a short 3 hours and Willie's labs looked good.  He is starting to feel better after being on the antibiotic for C-Diff for the past few days.  We drove into the parking lot at the apartment at the same time a man was crossing the lot.  He waited for us to park and when Willie got out of the car wearing his large filter mask the man shouted to us.
"You made it out!" He said brightly.
Willie mumbled something back and the man came closer to hear him.
"It must feel good to be out of the hospital." He continued.
Willie nodded his head in agreement.
"Do you have family here." I asked, motioning to the apartment building.
"No, my wife is on day 6 after transplant.  I'm on my way to see her now."  He opened his trunk and tossed a Trader Joe's bag inside.  The car was completely empty and spotlessly clean; I assumed it was a rental.
"How is she doing?" I ask.
"It's rough, but she's plugging along."
We nod in agreement.  In my life before cancer I probably would have saturated this moment with a huge dose of sympathy, but I have learned from being on the other side that no one is looking for that treatment.
"She'll be out soon." Willie's voice was muffled through the mask, but the man nodded that he heard him. "I got out on day 15."
Our new friend slapped his forehead and leaned back like he'd been pushed.
"DAY 15!" He shouted emphatically "That's gotta be some kind of record or something."
We smiled and laughed in agreement.
"That seems too close to even consider for my wife, but that makes me feel better.  The doctors have never given us a day for when she could go home."
"They didn't give us a day either." I assured "Everything goes by the counts."
We all stood, nodding our heads for a moment in acknowledgement of the almighty blood counts that rule each of our worlds.
"What kind of cancer does your wife have?" I asked without shame. 
This is another thing that cancer has changed about me.  In the past I would have been curious, but never bold enough to ask about what kind of cancer someone had.  I would have asked round about questions to possibly identify the type without directly asking, as if the person would scream at me if I was direct. 
I'm not like that anymore. 
After walking through the drudgery that is cancer, I am no longer afraid to ask people about their diagnosis.  In general, people are eager to share and I have yet to have someone take offense or refuse to answer my inquiry.
"She has a rare form of T-Cell lymphoma." He reported.
Willie and I nodded.
"Is the transplant a cure for...."
"There is no known cure for her type of cancer." He interrupted my question "they say that transplant is the only possible way she may reach a potential remission. They're really vague, but I guess there is hope."
I held his eye contact as he stared back at us.  In the past I would have looked at the ground as I tried to come up with a response to his admission that his wife is receiving the last possible treatment to prolong her life. 
I'm not like that anymore either.
"There is ALWAYS hope." I said back to him emphatically.
We stood there staring at each other.  I wanted to shake him and scream that there is nothing but hope for his wife because if there is no hope for her, then there is no hope for any of us, and that's not something I'm willing to accept.
After a moment he slowly nodded his head.
"I guess there is." He motioned toward Willie.  "Look at this guy!"
We smiled then exchanged hand shakes and learned his name.  We wished his wife the best and he left saying he hopes to see us soon.
I hope we do too.
I hope for a lot of things.
But that's what keeps us going.

Hooray for hope!

Day 28.

Today I am grateful for the following reasons:
1. We had a good weekend and enjoyed watching the super bowl.  Willie wanted to eat wings while he watched  even though his tummy is still not up to par.  I made him a few BBQ chicken wings and he ate them in bed while he watched the game.  It was the highlight of my week to watch him laying in bed like a king eating a banquet while he watched football.  It was a moment of sheer bliss and I could have watched it forever.
2. Yesterday we saw our friends Wes and Bekah at the cancer center.  Wes was Willie's roommate before he got the transplant and we were so happy to see them and catch up on each other's progress.  They are 22 days ahead of us and doing well which is always good to hear.
3.  We had a frustrating day at the cancer center yesterday.  We arrived at 10 AM and Willie had his labs drawn.  It usually takes about an hour to get results, but lately they have been so busy that it has been taking longer.  We finally got results at noon and everything looked good.  He is still having some bowel issues, but the nurse didn't seem worried about it.  We were ready to leave at noon, but we had to wait to see the Doctor first.  The Dr. ordered a stool sample to rule out any infection so Willie complied and we continued to wait.  2 hours later we still hadn't seen the doctor and we were both ready to leave.  I found the nurse and asked her what was going on.  She assured me that the dr knew we were there, but we needed to be patient.
At 2:30 PM Dr. Lenny arrived.  He shook our hands and introduced himself.
"You are the one that did my bone marrow biopsy." Willie reminded him.
He looked at Willie and squinted as if trying to remember.
"I do so many of those, I'm sorry if I don't remember.  Was it good?"
"I wouldn't say any biopsy is good, but it was my first time with the power drill and it went OK."
Lenny smiled at his response.
"Well we got the results back on your stool sample and you have C-Diff."
Willie and I both sighed at this news and I smiled at the doctor.
"What a relief!" I said.
"You think this is good news?" He looked at us like we were crazy.
"At least we have an answer now!" I explained "We are going on 10 days of these bowel problems. Now we can get him some antibiotics to fix things."
Lenny looked at Willie who was nodding in relief.  He didn't know what to think of us.  Most people aren't relieved to discover they have C-Diff.
4.  Willie started the medication last night and is feeling marginally better today.
5.  I am so so SOOOOO grateful that doctor Lenny insisted on running a stool sample when the other doctors hadn't.  I know Willie is going to feel a lot better once he kicks this infection.

We have been so blessed all along this journey.  I am so grateful that Willie has done as well as he has so far, I am grateful for the good people who we have met along the way and for the overwhelming support of the friends we have back home.  Thank you all for your continued support through prayers, words of encouragement, donations of time and money and most of all for your friendship. 
We are so incredibly blessed!

Day 24.

Hair is almost gone!

We go to the Stanford Cancer Center every Monday, Wednesday and Friday at noon.  They have been ridiculously busy lately as it seems EVERY cancer patient has contracted the flu.  There is a giant sign stating that everyone who enters the cancer center must wear a yellow mask and the waiting room has the feel of a hazmat area.  For some reason they had Willie listed as contagious so the past few times we have visited they have quickly escorted us into a private room with sliding glass doors. 
When we checked in on Wednesday, the front desk lady asked his name and typed it into the computer.
Her eyes grew wide and she jumped up and came around the desk.
"We'll take you right back Mr. Beavers." She said, pushing us down the hall.
We didn't argue with her because it's unusual to not have to wait at 10-15 minutes for a room.
"I have Mr. Beavers." She announced as we came down the hall.
I watched with interest as the crowds of nurses parted to let us through.  She took us back to the doors of a private room, but a housekeeping lady was inside sanitizing the room.  She wore a full yellow gown and my nose burned at the smell of bleach.
The lady helping us seemed antsy and she watched Willie's every move as if he was infecting the entire building by standing still. I noticed a sign on the door that read something about contact precautions for infectious disease.
"He doesn't have anything infectious." I said to the woman.
"He's listed as isolation in the computer so we have to treat him like he does." She replied, obviously not trusting me.
As soon as the room was clean she practically pushed us inside and slid the door shut quickly behind us.  The entire scene was a bit comical to me.
The nurse practitioner came in a bit later.  Her name is Amy and she is a cute, blond, 30 something doctor who is about 8 months pregnant.  We have been seeing her since Willie was released from the hospital and we really like her.
She came in wearing a full yellow gown and mask.
"How are you feeling?" She asked, sounding concerned.
Willie reported that he is doing OK with the exception of the hemorrhoid that is ruining his life.  She relaxed as we talked then explained that she thought he had contacted some sort of virus because of the room he is in.  We tried to trace back the origins of the mistake and she discovered it dated back to the day after he was released from the hospital when we asked for a room with a bathroom in case he needed to go.
This request somehow translated into the need for a private room because he is contagious!
She changed that in the computer for us so we wouldn't be treated like a disease.
Today when we arrived no one even batted an eye.  We waited a good 20 minutes before we were led back to the common room to choose from one of the many recliners in the open room.  Willie was feeling nauseous and requested a private room to be away from others.  There were no rooms available so we ended up sitting in the corner next to the window.  Across the aisle there was a man receiving an IV treatment.  Moments after we sat down his wife arrived with lunch and the pair sat together and ate the most aromatic Chinese food I have ever smelled.  The stench made Willie gag and I was sure he was going to yak all over them. 
I don't understand why anyone would eat anything stinky in a cancer ward.  It seems there should be some sort of sign that prohits anything that has a greater aroma than saltine crackers and apple juice.
We were able to move to a different chair, but it was in the same room and the smell seemed to follow us.  He got some meds for nausea then slept in the chair for an hour while we waited for the labs to return.  His counts are doing great!  His white count jumped to normal reading of 6.5, his reds are still low at 9.0 and his platelets are in the normal range at 215. 
The haemorrhoid seems to be healing and he is having less pain which is good, but it seems he has traded that for nausea today.  I hope tomorrow he will get his first day free from both.
His hair has been falling like confetti this week.  There is a trail of dark hair slivers left behind wherever he sits or lays.  I've been running through silly amounts of lint roller tape to keep up with the hair fall, but it is too fast for me.  Today we buzzed his hair again to get a bit closer to the scalp. The hair that falls now looks like sprinklings of pepper.
We don't have any schedule appointments this weekend at the cancer center so we are looking forward to a few days of rest.  I hope everyone has a wonderful weekend!
See you all Monday!