Difficult Conversations and Small Celebrations

Every day here feels so long!  It’s not that the days drag on.  They fly by.  But so much happens in a 24-hour period, it’s hard to believe all of it happened in just one day. 

Today, my parents had gotten up early to be at the hospital by 6:30, so they could be there when the physicians made their “rounds” (when all the doctors go around and see the patients each morning).  Somehow, they still missed the rounds. 

Later this morning, my mom and I got to spend some time with Billy in the ICU.  His room was small, so we stood on either side of his bed while he slept.  And all of a sudden, the physicians came by!  We had missed “rounds”—but for some reason the doctors came by again anyway.

This time, it was Dr. Lettieri from internal medicine.  He gave us an update on Billy.  His pain seems to be under control now.  (They got Pain Management involved, and some of the recommendations seemed to be working!)  His platelet counts were low, and that was something they were continuing to watch.  And they were as “on top of the infection as much as they could be,” so they were planning to move him out of the ICU up to the Hematology/Oncology ward.  Back to the 7^th floor! 

As Billy slept and we talked, the conversation turned to harder things.  Last Thursday, according to Dr. Lettieri, they would have said Billy might live a few more days.  But it was Monday now, and Billy was doing better than they ever expected!  It was good news.  He was interacting with people more.  He seemed to be in less pain.  After the intensity of the past few days, it felt relieving to hear about Billy’s improvement. 

However, according to the doctor, Billy’s cancer is still a big factor, and it’s a factor they don’t think they can beat.  As my mom asked questions, I could see the pain on her face.  The fear of losing her son was overwhelming her.  The doctor shared some hard news—news I’ve always been reluctant to share.  I want to hold onto hope, to have faith that God could heal Billy. 

So I asked the doctors a hard question.   “I’m writing a blog,” I said, “to keep people informed about what’s going on.  I’ve focusing on celebrating our victories, even if they’re really small ones.  This journey is incredibly hard, and I don’t want to focus on what’s hard all of the time.  But there’s a difficult reality to this.  How do I continue to celebrate, without giving people a false picture of what’s going on?  How do I let them in on some of the things we just talked about?” 

And the doctor recommended that I give you all the full picture—to let you see what’s really going on, and to invite you to choose to hope and celebrate with us, even in the middle of the hard stuff. 

In reality, Billy is very weak.  He’s doing better, but he has lost a lot of strength.  His platelet counts are low, and we’re not completely sure that the infection is entirely gone.  They’re not sure if or when he’d ever be able to take chemo again.  And when Billy was originally diagnosed on September 23, we knew that the only option was chemo.  If they can’t do chemo… 

I know.  It’s hard news to swallow.  I want to fix it.  To try whatever we can.  To extend his life as much as possible…  But Billy is not a science project.  He’s my brother.  And his spirit was never meant to live in a hospital bed.  Everyone who knows him well knows that.

“There are things,” the doctor said, “that we could try to be able to say that we did all we could.  But not all of those things are going to be good for Billy.”  So the question now is about giving him the fullest life possible, for the longest amount of time we can. 

When I think about all of this, it overwhelms me, and I cry.  I can’t imagine life without my brother.  There are so many things we planned—things we talked about (like running the marathon next summer in Hawaii), and things we haven’t spoken much about because life hasn’t gotten there yet (like having Billy in my wedding, or getting to introduce him to my kids…two things I hope for but aren’t yet part of my life).  I always imagined Billy in all of the wedding pictures for our family. 

I think all of us imagined a lot of things, and it hurts to think about those things not happening the way we had planned…

So now, what I’m hoping for has changed.  Big-picture, I still hope for Billy’s healing.  But there are smaller, more tangible things I’m hoping for here…

Today, I got to spend quite a bit of time with Billy in his room.  My family had gone to eat lunch, and I stayed behind to keep him company while he napped.  He woke up after a while, and was far more alert than he had been in a long time, probably since before we left Miami last week.    I told Billy about his infection.  I filled him in on the A-line on his right wrist.  And I got to ask him how he was feeling about moving back up to the 7^th floor.  It was really good time with Billy—similar to the time we had shared in Atlanta a month ago.  Talking about life and about deep stuff with Billy, and just spending time with him…that has always been one of my favorite things in life.  And I got to do that today!

One of the life things we talked about was the idea of me going into nursing someday.  I’ve been thinking about it for the past 4 years, and I told Billy about how I enjoy helping people with medical stuff.  “You want to be a water nurse?” he quipped.  I thought for a second, and then I looked at his face.  Aha!  There was that smile!  He was cracking a joke…coming up with a fun way to ask me for some water.  I love seeing that smile, and hearing him joke around!

I shared some stories with him, and messages I’d heard from friends who had sent emails and texts over the past few days.  Sam, I shared some of your recent email about Buddy and some of your memories, and I told him about a few of the pictures you had sent.  He smiled when he heard about the one after you picked them up from SERE school, when they all had little moustaches.  His face said he was remembering good times with friends, and maybe some inside jokes or stories that would make you all laugh.  I know we’ve all laughed as we’ve heard some of them.

When Sam dropped them off for SERE school.

The morning Sam picked them up, 3 weeks later.  Note the mustaches!  

The things I hope for every day are smiles and laughter, good memories, and small signs of progress.  I want Billy to be able to celebrate and remember the friends and family in his life—and I want all of us to be able to do the same.

I know a lot of us are hurting.  It’s hard to see someone we love so much suffer.  And I long for times when some of you get to see Billy and to laugh, share stories, and celebrate his life.  I like seeing the banter that happens between friends.  Billy loves that stuff. 

I have one more quick story to share…and I should probably ask for permission…but I’m going to share it anyway.  I know many of you know my brother as Cooter or Will, but he will always be Billy to me.  And I know that some of you have attempted to use that name to refer to him, only to be reprimanded, or wrestled to the ground, or sprayed with a fire extinguisher.  To family, my brother is Billy.  To the army, he is Cooter or Will.  That’s how he wants it. 

Well, a funny thing has been happening.  As we’ve hung out with army friends, I’m hearing more and more people call him Billy.  How can you not, when that’s the name I use on the blog? 

Anyway, Billy’s friend and former room mate, Rob Smith, was telling me that he used to call my brother Billy all the time, and Billy used to get really mad.  So much earlier, before Rob got here, he sent me a text.  “Michelle,” he said, “please pass this along to Will.  He’ll understand because he hates when I call him Billy.  ‘BILLY!!!!!!!!!  I’m trying to arrange a trip.  I’ll get there as soon as I can foo.  Love ya.’” 

I shared the message with Billy.  And Rob’s message was clear.  Billy smiled. 

Just yesterday, as we were talking about Billy’s sense of humor, and how it seemed to be coming back, I told Rob he should call him Billy.  I thought my brother would appreciate that.  ;-)

I never heard how that went, but I saw the following message on the dry erase board on Billy’s room when I left his room tonight (Monday night).

I smiled.  Well-done!  “Billy, did you see what Rob wrote?” I asked.  "Yeah," he said.  And gave me the biggest eye roll!  So annoyed...  Rob’s message was perfect, because it was done in the slick, sneaky kind of way that Billy often uses (like leaving a case of beer in a friend’s refrigerator before he even knew he was there).  Billy loves people well, and he’s clever in his delivery.  He loves to surprise people!  Most of the time, you don’t know he was there until he’s long gone.

The banter between friends is a fun thing to watch.  And despite infections and cancer and hard questions, today I saw that my brother is very much alive.

Some ways to pray:

• Pray specifically.  Today, my mom prayed that she’d see Billy sitting up, and that she’d get to see him without all the tubes and wires sticking out of him.  That was NOT the picture we've had recently.  But today, he was more alert than he’s been in almost a week!  And, many of the tubes and wires were removed because they were no longer needed outside of the ICU! 
• Billy’s 26th birthday is coming on Thursday.  We want it to be a special day.  Pray for creativity in figuring out how to celebrate my brother.
• For us, as a family, to figure out how to love each other well through all of this.  We’re hurting.  This is really hard stuff.  And we’re all dealing with this differently. 
• God’s help in making hard decisions as the difficult questions come up. 
• The fullest, best life possible for Billy.

A note...I've gotten a lot of calls, emails, messages, and texts.  And I haven't been able to respond to all of them.  But thank you!  Thank you for your concern, your encouragement, your thoughtfulness, and your prayers.  Even if I'm not able to tell you personally right now, it means the world to me and my family.  And Billy still can't believe so many people are praying for him!

Unexpected Changes

I have so many reflections I want to share…  And finding the words to transition from that, to the news I must share… it feels utterly impossible.  I think this is the hardest blog entry I’ve had to write yet. 

Billy is VERY SICK.  According to the doctors, he is “as sick as a person could be from a medical standpoint.”  It’s not just limited to stage IV stomach cancer anymore.  Billy has developed an infection in his abdomen and it is VERY SERIOUS.

I know you’re asking how this could possibly be happening.  Many of you heard about Billy’s walk off of the plane yesterday when he arrived at Walter Reed.  It is true that he walked off; it’s not a rumor.  But the other truth is that his walk could not be completed without massive amounts of effort, and quite a bit of pain. 

Billy is not one to complain.  Many of you know that.  He takes a hit.  Life doesn’t go his way.  And he shrugs his shoulders, accepting what has come, and moving forward the best he can.  Consistently through the last 2 ½ weeks, the nurses have come in his room to asking, “On a scale of 0-10, how’s your pain?”  He hasn’t really complained.  He just gives the number—sometimes verbally, and sometimes by holding up fingers on his hands—and the nurses move to address the situation.  Most of the time, they’ve been able to get his pain down to 1 or 2.  It has crept up to 5 or 6 at times, but then they’ve gotten it down to 1 or 2 again.

But that’s not the case anymore. 

Since Billy arrived at Walter Reed yesterday afternoon, his pain level has been climbing.  It held steady at a 5 or a 6, and then increased to 7.  Sometime yesterday or today—I can’t remember when it was—I asked him for his pain level as he grimaced.  “I don’t know,” he said, sort of groggy.  “I can’t put a number on it.  It just hurts.”  Many times last night as I stayed with him in his room, he’d ask me what time it was.  “1:15 in the morning,” I told him.  He replied, half moaning, “Oh, God…”  The time was creeping by so slowly. 

But time until what?  He didn’t know.  He just wanted the pain to go away.

The physicians at Walter Reed have been collaborating and working hard to assess Billy and come up with the best treatment possible.  This morning, as they did “rounds”, a group of 10 or so came into Billy’s room.  The head physician wanted to fill us in on what they were seeing, and what they had planned for the day.  It was an ambitious list:

• Paracentisis (drain the fluid from Billy’s belly)
• An ultrasound to look at his bile system—to inspect for any kind of blockage
• Perhaps he would get albumin (in an IV line)
• The GI doctors would reassess his anatomy with an endoscopy (camera down his throat), and possibly consider a stent to help his stomach to drain
• Someone from nutrition would come in and start the TPN (a bag of fluid nutrition)
• Starting the PCA (patient-controlled anesthesia) pump

That was the list this morning.  By mid-afternoon, it was clear that the day’s list had to change.  The ultrasound happened, as did the paracentisis.  He got the PCA pump, and someone from nutrition came.  But then it all stopped.  We met with the physicians in Billy’s room, and Dr. Gallagher told us that there was something wrong with the fluid from Billy’s abdomen.  There always has been something wrong; the liquid shouldn’t even be there.  The cancer is producing the fluid, and it causes swelling and pain in his belly.  But this time, they weren’t able to drain much fluid.  According to Dr. Gallagher, the fluid was probably “unlike any other fluid that had been drained from his belly before.”  (He’s had this done 3 other times.)  The doctor proceeded to tell us about his fluid.  It was thick, like mucus.  It was yellow—the wrong color for this kind of fluid.  It should be more of a dark green shade.  And it was filled with bacteria.  Billy has developed a major infection (sepsis) in his abdomen.  There is “unequivocal evidence.”  Billy has an elevated heart rate, his blood pressure is falling, and there are three kinds of bacteria in the abdominal fluid.  It’s not good.

To make matters worse, there is an even greater danger.  If Billy’s bowel tears, all kinds of bacteria will leak out from his intestines.  In the words of the doctors, it will be a life-threatening situation for him. 

At this point, the doctors are unsure whether his bowel is already torn.  They can’t quite tell. 

Everything inside me wants to scream.  I was in Billy’s room earlier, and my mom came in to gave me a hug.  I know I can’t break down in front of him.  I have to be hopeful and strong.  But when my mom hugged me, I lost it.  I fought to contain my emotion.  “I have to get out of here,” I whispered.  She let go, and I left.  I went to bridge overlooking and outside garden and bawled.  This can’t be happening to my little brother! 

Just a month ago, we had hung out in Atlanta, talking about relationships, weddings, and plans for the future.  He planned to be in Hawaii with the army by mid-October, and we talked about training to run a marathon together sometime next summer.  I actually found one in Hawaii on June 26.  It sounded like a fun challenge, and a good excuse to hang out together. 

And now, I’m not sure how much longer my brother will be alive. 

I have hesitated to say such a thing, because I have refused to despair.  I believe in a God who does the impossible.  I’ve seen miracles happen in my life and in the lives if my family and friends.  I believe that God can heal Billy.  The painful part is not knowing if He will. 

We face some tough choices ahead.  If Billy’s bowel is torn, the question of surgery arises.  If the bowel is torn because of cancer, the surgeon faces an impossible task:  you can’t attach cancer to cancer and expect it to heal.  If the bowel is torn, and it’s not because of cancer, surgery could be possible.  But it could be too much for Billy’s body to handle.  He might not come out alive.  And even if he did survive the surgery, we’re not sure what quality of life he would have.

The reality, medically speaking, is that Billy is dying.  And nothing short of a miracle will save him. 

He’s currently in the ICU at Walter Reed.  They’re trying to stabilize his pain, to bring his pulse down, and to bring his blood pressure back up.  He’s on a ton of antibiotics, and we’re hoping that his body responds to them.  We’re praying that the antibiotics kill his infection.  If they don’t, surgery may be our only option.  And we’re not sure that’s a good option for him. 

There are a lot of hard decisions ahead.

In the meantime, people are trying to get here as fast as they possibly can.  My dad and my fourth brother, Chris, are flying out here tomorrow from Colorado.  Bobby’s wife, Blair, is flying in tonight.  My mom’s sisters and a few nieces and/or nephews are driving from Massachusetts as I write this.  We’re trying to be together and with Billy as much as possible.

He’s in the ICU, and visits are restricted to the immediate family.  The focus right now has changed.  We’re not trying to beat cancer right now (we’ll get to that later).  Right now, we’re focused on beating the infection and keeping him alive.

Billy is there, but he’s not the same Billy we’ve all come to know and love.  That Billy loves to care for people, to buy things for them, to clean up their messes, to give until he has nothing left, and to make life a lot of fun.  The Billy in the ICU is in a lot of pain.  He can’t really talk, and isn’t always alert all of the time.  He’s needy, and he looks ill.  He’s not the same Billy that we all saw a month ago. 

The picture at the top of this blog was taken at his graduation from flight school on September 2, 2010.  No matter what happens here at Walter Reed, that’s the Billy I’ll always remember.

At this point, the picture is grim, but the hope isn’t gone.  He’s still alive.  We can still pray.  So please pray, for whatever comes to mind.  I trust that God will show you how.

You may text, or send Facebook messages or emails.  We probably won’t respond right away.  And we may not answer calls.  We can’t have our phones on in the ICU. 

I was in the ICU with Billy a little bit ago.  I felt so helpless.  It feels like there’s nothing I can do.  I spoke to him about our plans for the evening…we were going to get something to eat, and then we’d be back to visit him.  He seemed confused.  The pain and medicines and trauma are a lot for him to bear.  All I could do was to say, “I love you.”  And I saw his lips move.  I read his lips.  “I love you too” he said silently through his lips.  But I heard him loud and clear.  I know he loves me.  He has proven that time and again by how he has lived. 

I know some of you may think it absurd for me to write a blog entry at a time like this—but this blog has been good for me, for all of us.  It’s the best way I know to let all of us be in this together.  I don’t know how all of this will end, but we’re going to need you—our family and friends—to press forward.  And I wanted you to know what’s going on.  It happened so fast, and it has taken all of us by surprise.

The social worker told us not to try to make sense of it all.  “Your brains will be like scrambled eggs,” she said.  And she’s right.  It’s hard to understand anything right now.  Except that I want to be with my brother as much as I possibly can.  So I’m off to the ICU…

Thank you for your thoughts, words of encouragement, hugs, prayers, and offers to help.  I don’t know how we could do this without all of you.

Reflections

We heard from our friends, Erin and Debbie, that Billy was going to have his abdominal fluid drained again today.  They had arrived at the hospital early this morning, and then shared the news.  When we arrived at the hospital around 11:30am, he was already gone for the procedure.  Not too long after that, we spotted his bed rolling down the hallway, back toward his room.  We saw his face, and watched the grin spread across it.  He had spotted our youngest brother, Danny, who had arrived late last night.  :-)  "What's up?" he said, as he continued to roll by us, into his room.

We've had a good time with him, talking and laughing.  Sharing jokes.  But in the middle of all that is the reality of cancer:  the NG tube (nasal gastric tube) that sucks out the contents of his stomach, the port on his left shoulder, the tape and bandages covering the lesions from the two chest tubes.  He is incessantly thirsty, and he can't really eat anything.  A few people were around this morning when he "ate something and held it down for about 25 mintues"--but I haven't quite gotten the whole story, so I can't relay the details.  Things have seemed to get a bit better (the main thing being that his pain is under control), but there's still the reality that he has stomach cancer, and he is not holding in any nutrition.  The nursing staff mentioned starting him on intravenous feeding today.  I'm not sure if that has happened yet.  Often, things move a bit slower than you'd expect.  It's a whirlwind, and it feels so slow at the same time.  So much happens in a day, and yet so little.

In the middle of all of this, our friend Erin asked me if I'm keeping a journal.  It's a good thought, and I probably should, because there are so many things going through my head.  But there's no time!  I sit down to do one thing (to write this blog, or to contact someone who has sent a message, or to phone a doctor who might be able to help us sort this out), and I realize there are 20 things left for me to do.  There is no time for me to journal and reflect on what is going on.  Billy and my family need my help too much.  It's not that I feel pressured.  I really want to help!  There are just so many things to help take care of.

As I've thought about Erin's question, I've realized that this blog might be a good place to share some of my reflections.  I hesitate, because this is about Billy much more than it's about me.  But you can't talk about Billy without talking about the huge network of friends and family that he has impacted, served, loved, and touched deeply.  Everywhere he goes, he makes friends.  As my mom says, it's like he casts a spell on people.  People all over love him deeply.  And you can't talk about Billy having cancer without talking about the effect it's having on the people who love him.  So I thought we could take time to do that today.

I've tried to write positively and hopefully on this blog, because I am hopeful.  I believe God could heal Billy, despite anything that any medical facility says.  But his diagnosis is "poorly differentiated gastric adenocarcinoma."  It is stage IV, meaning the cancer has spread beyond his stomach.  Because of that, the doctors here have said it is inoperable.  The only option is chemo, and we don't know if that will work.

A few days ago, as Billy lay sleeping in the ICU, I stood by his bed and watched him.  All I could do was cry.  I had my Bible in my hand, but I couldn't even read it.  In my head, I believed that God could heal my brother.  But in my heart (and even admitting this in writing is difficult), I wondered if God really would.  I was afraid.  What if I read scripture out loud, and the people around me heard me, but God didn't do what we asked?  What would that say about the God that I follow?  My voice felt stuck in my throat.  In the middle of all that, slowly, I began to read the words to Psalm 46.  It's the scripture I held onto when Billy was in the 82nd Airborne, and he was stationed in Iraq during the war (2003).  At that time, I listened to the radio every day, hearing news of bombing in Fallujah and Bagdad, wondering if my brother was okay.  Every time the phone rang, I was afraid of what I'd hear.  It felt like my world was threatening to fall into the ocean...

During the war, Psalm 46 spoke to some of my fears.  Now, it once again feels like my world is threatening to fall into the heart of the sea.  Once again, Billy's life is threatened.  And I am fighting to believe that the Psalm is true.

Psalm 46
1 God is our refuge and strength,
       an ever-present help in trouble.
 2 Therefore we will not fear, though the earth give way 
       and the mountains fall into the heart of the sea,

 3 though its waters roar and foam
       and the mountains quake with their surging.
       Selah

 4 There is a river whose streams make glad the city of God,
       the holy place where the Most High dwells.

 5 God is within her, she will not fall;
       God will help her at break of day.

 6 Nations are in uproar, kingdoms fall;
       he lifts his voice, the earth melts.

 7 The LORD Almighty is with us;
       the God of Jacob is our fortress.
       Selah

 8 Come and see the works of the LORD,
       the desolations he has brought on the earth.

 9 He makes wars cease to the ends of the earth;
       he breaks the bow and shatters the spear,
       he burns the shields [b] with fire.

 10 "Be still, and know that I am God;
       I will be exalted among the nations,
       I will be exalted in the earth."

 11 The LORD Almighty is with us;
       the God of Jacob is our fortress.
       Selah

In the middle of this confusing world, there's a lot going on.  Writing this blog has been helpful.  It's a place to focus and direct my thoughts, and it's a place to communicate with all of you.  It keeps my mind going in a particular direction.  But it also helps me to help Billy.  I want to be able to explain this stuff to all of you, so it helps me to ask better questions.

The situation is serious, and we're trying to figure out the best possible course of action.  We're also trying to understand how the army works, because the army has been a huge part of Billy's life for the past 7 years, and they are playing a huge role in his care.  Here are some things we've learned...

• The army is a huge network.  Even though soldiers may have said their goodbyes when they left one place (D.C., for example), they can (and likely will) see each other again later (in a place like Ft. Rucker, AL).  Billy--and a lot of his army friends--are connected to people all over the world!
• Billy has made a lasting impression on a ton of people.  Everywhere we turn, people are offering help in concrete and specific ways.  It is amazing to watch!
• Tyler just arrived tonight.  He is stationed in Kuwait, and the army expedited an approval of emergency leave for him to come and be with Billy for a while.  The army even paid for his plane ticket (and it wasn't cheap)!
• Billy was stationed at Fort Rucker in AL.  When they heard about Billy's diagnosis and this blog, they decided to publicly display the blog so that people could keep up with what's going on!
• All over, people are offering to step in and help.  People are connected to information, resources, and other people who are helping us to sort through all of this.  There's a lot to sort through--but it's amazing to have so much help!  

As we understand things now, there are three major geographical steps to this process.

• Step 1.  Billy is an inpatient at Baptist Hospital in Miami.  He's undergoing one round of chemo, so that he can move to the next step.
• Step 2.  Billy will be moved to an army hospital to be evaluated by army physicians.  The plan is to move him to Fort Gordon, GA, sometime after he finishes this first round of chemo.  He should finish this round on Friday night, just before midnight.  
• Step 3.  The army will assess Billy's condition, and give a suggestion for long-term treatment.  (We still have to figure out what all of that means.)  And then Billy will be moved to a long-term treatment facility.  

It's not that Billy couldn't be treated in Miami.  He's just here because he was on vacation in the Florida Keys, and this is where he went to the ER.  But Florida isn't home.

It brings up an interesting question, though:  Where is home?  For our family, Durango, CO, is where we grew up.  But for many of us "kids", Durango doesn't feel like home anymore.  Billy and I actually talked about this a few weeks ago, when we were together for his graduation from flight school.  We talked about home--and how it's not really a particular place, but more among the people we love deeply.  For me, home isn't the house I grew up in.  It's spending time with my family, wherever that is.  And that's what makes this situation difficult, because my family is so spread out.  My mom, Danny, and I are currently here in Miami.  But what about long-term treatment?  The army base in Colorado is in Fort Carson--but that's an eight-hour drive from our hometown.

At this point, being near Durango doesn't feel nearly as important as being in a place where our family can be together, where Billy can get the best treatment possible, and where we can see Billy as he works through this whole thing.  I don't know how all of this is going to turn out in the end.  I don't know how much longer I'll have to spend with my brother...  (It makes me cry, just thinking about it.)  But whereever it is, I want to be able to spend as much time as I possibly can with a brother who means the world to me.  But that's how I feel about it.  I think it ultimately depends upon what the army says, and what Billy decides to do.

The set-up here has been amazing.  Melissa has been amazing.  She opened up her home for us to stay for as long as we're in Miami.  Adrienne came from Fort Rucker, AL, and cooked us meals.  Melissa, Adrienne, and Nate (Germany) have shuttled people to and from the airport.  Melissa's family has prepared meals.  Her parents have helped us think about treatment.  Nate's mom bought us dinner last night.  Adrienne did our laundry.  It his been incredible to have such a support team, so that we can be at the hospital, interacting with Billy's medical team and asking questions.  We have not had to leave the hospital one time during the day--and it has allowed us to spend a lot of time with my brother, caring for him and helping to decide what would happen with his treatment.  The time in Miami has been phenomenal--more than I would ever have expected.  Thank you to all the friends who have stepped in to care for my brother and my family!  We could not do this without you.    

As I've pondered everything that has been going on, I've also been thinking that this blog might be a good place for some of you to share your thoughts.  Perhaps you might like to share one of your favorite memories of Billy, or some way he has impacted your life or the life of someone you know.  Feel free to share in the comments below.  I'll be sure Billy hears them!

Here are a few more things you can be praying for now...

• Please pray for the chemo to knock out the cancer.  
• Billy still needs nutrition.  He hasn't eaten anything in over a week.  Pray for his body to be able to receive and hold onto food.  
• My family has a lot of questions, and we want to get time with the oncologist.  But we haven't been here early enough to talk to the physician while he makes his rounds.  Pray that we'd get good sleep tonight, and that we'd wake up early enough to get here in time to talk to the oncologist.  Pray that we'd get a lot of clear answers.

Thank you for everything!  Thank you for your prayers.  

Treatment Plans

Note:  This was posted at 3:30am on Tuesday, but it refers to everything that happened the day before, on Monday, September 27.

Holy cow!  What a day!

At 8am on Monday, we woke up to quite the phone call.  A social worker informed my mom that the army had made it's decision.  The orders had been signed and Billy was going to be moved to Eisenhower Army Medical Center in Fort Gordon, GA.  The army would evaluate Billy's condition, and then he would be sent to Colorado for treatment.

In any normal life, with any minor medical issue, I guess such a phone call would make sense.  But after yesterday?  When the move from the ICU to the 5th floor wore Billy out so much?  When the move was painful and difficult?  If an hour-long move from one floor to another took so much out of him, how could he possibly be ready to move hundreds of miles to another medical center?  Last night, we had decided to start chemo to try to knock out some of his cancer.  If that could happen, his pain could lessen.  Maybe he could start to hold down some food.  And then, hopefully, he'd be ready to move.  But not yet.  He didn't seem ready.

It was a shocking message in and of itself.  But it was a jolting, abrupt message early in the morning in this strange new world--a world that doesn't seem to make any sense.  Sometimes (in my "normal" life), I like to snooze when my alarm clock wakes me.  But I've never once set an alarm here.  I've gone to bed at 2 or 3am, and I somehow wake at 8am every day.  You wake up, and your mind starts going.  You realize that life isn't normal, and you're not in your own bed.  All of a sudden, cancer entered our world, and life seems like it doesn't make much sense anymore.

Needless to say, that 8am-phone call woke me right up, even after going to bed last night at 3am.  We got ready as quickly as we could, so we could make it to the hospital by 10am to see Billy and figure out what was happening.

We got to Billy's room, and he was as confused as we were.  Right away, he asked, "Why are they talking about moving me?  I thought we were staring chemo."  We had no idea.  And it was a bit disorienting.  "I don't get it," he continued.  He pointed to his chest.  "We had this port put in a couple days ago, so that we could do chemo, right?"  And we agreed.  [I'll explain this in a minute.]  "And that's why I got the chest tubes, and it's why I was moved up here [to the 5th floor tower]."  It was more a statement than a question, but we nodded anyway.  He was right.  All of the physical distress--the weariness from moving, the pain of moving, the installation of the port--all of that was so that he could take chemo.

And then to be told that he was moving to another facility now, without any chemo, didn't make any sense to us.  His pain had just been stabilized.  We didn't want to jeopardize that again before we tried to use chemo to knock out some of the cancer cells.

Allow me to pause the story for a sec, while I explain a couple of things...

"The Port"
The purpose of the port is to allow delivery of chemotherapy to the blood stream.  The port deposits the chemo to the inferior vena cava, just above the heart.  The chemo gets mixed with a large volume of blood right away and circulates throughout the body.  The chemo attacks all of the cells in the body (not good), but it attacks the fastest-growing cells the most.  Since cancer cells grow the fastest, they take the biggest hit.  But the rest of the cells take a hit too.  The hope is that the body regenerates the good cells, and the cancer cells stay dead.  I don't understand the whole thing completely...but in some cases, it really works.

Anyhow, the port gets put in for chemo delivery.  But there are risks to inserting the port.  One of them is "pneumothorax".  It's rare, but it happened with Billy.  In normal situations, there's a lining around the lung.  In the space between the lining and the lung, there's fluid.  When pneumothorax happens, air gets in that area around the lung.  So when the diaphragm moves to bring air into the lung, the pressure doesn't change like it should, and air can't come in the lungs.  (When people talk about lungs "collapsing", this is what they mean.)  It's not a good situation.  In Billy's case, this happened.  So the medical team here had to put in two chest tubes (very painful) to allow the air to get out, so that Billy could breathe.  During the first night, he was on a ventillator.  Over time, that was stopped.  Eventually, one chest tube was removed in the ICU.  The other was removed this morning!

The Move
The move out of the ICU was always planned.  But the move up to the 5th floor tower was so Billy could begin chemo.  Moving him out of the ICU yesterday was good news!  But it was a tough day, and it wore him out!  He was exhausted and in pain for a lot of the day.  It wasn't until late yesterday evening that they seemed to be able to regulate his pain medication, and he was able to sleep.

So back to the story...
The phone call had informed us of a move to Fort Gordon.  Why move there, when Billy had already been evaluated here?  That's where the presence of Billy's friend, Nate, was invaluable.  Nate is an "army insider", currently on leave from Germany.  As we asked questions, Nate was able to explain the "army way".  "It's not that the army doesn't trust the doctors here," Nate said.  "It's just that they have their way of doing things--the army protocol.  And it's in army protocol to move Will to an army facility to have him evaluated by army doctors.  And then the army will decide on the best place for his care."  It makes sense.  As the army sees it, Billy is their responsibility, so they're going to handle his care.

But they won't do it blindly, without regard to Billy and what he needs.  Together, my mom, Billy, Nate, and I talked with the patient care facilitator and the social worker about the options.  We talked about Billy's pain and his current state.  His stomach is currently shot.  The cancer is so strong, his stomach isnt working.  It's building up a lot of fluid, and that's causing a lot of pain.  We can address the fluid.  The pain may go away for a time.  But if we don't address the cancer, the fluid will keep coming back.  And so will the pain.

We knew a move to an army hospital would happen eventually.  But the most pressing issue was dealing with the cancer.  If we could just knock some of it out, then maybe we could get some of the fluid to go down.  Maybe we could get his stomach to process some food.  And maybe some of his pain would go away.  I say "maybe" because chemo isn't guaranteed to work.  A lot of times, it works.  But there's no guarantee.  And there are risks to consider.

However, at this point, we haven't gotten very far.  Billy's pain has been regulated, but we have to do something about the source of the pain--the cancer.  And the only thing we have is chemo.  Billy's doctor said he would be okay with moving Billy after one round of chemo, as long as he would be moved to another medical facility.  So Billy decided we should go for the chemo.  Wait on the move.  See what happens.

At this point, there's so much more I could write about the details of the day.  Instead, I'll give a few brief summary.

More friends came to see Billy today (Monday) .  Some of the same visitors were around...

• Kelsey (from D.C.)
• Nate (from Germany)
• Melissa (married to Tyler, who is on his way back from Kuwait)
• Judy and Doug (Melissa's Parents)
• Jill (Billy's and my mom)
• me :-)

We also had a few friends fly in from Durango, CO...Debbie and Erin.  Erin and Billy have been close friends since high school, and Billy has been an honorary member of her family ever since.

Also, once again, Laurie and Adrienne did a stellar job as our support team!

So how is Billy?
Tonight, after everyone left, I asked Billy if there's anything he'd like to share with the world.  "Today was a good day," he said.  "I felt really good, and I feel like we're making progress."  I asked what he meant by that, and he referred to the reduction/regulation of pain.  [He got a PCA today...a device that allows him to control the delivery of his pain medication.  And that really helped!]  I asked how he was feeling about chemo.  He knows it's a poison, and he wasn't wanting to do it at first.  "You do what you have to do," he said.  [Such an army mantra!]  "We'll get through this!"  His attitude is so great!

As he sat up tonight to try to grab something on his own [he's still got his independent spirit...and friends who know either one of us will know exactly what I'm talking about!], I told him, "You know, when you get through all this, you're going to have to do a ton of situps to build up your abs again."  "Oh, I know," he said confidently.  And he's still talking about running a marathon with me sometime.  Maybe not in the next nine months...like we planned to do together next June in HI...but eventually.  It's a good sign.  He's got a lot of fight in him.

And he's right.  Today was a good day!  Despite the difficulty, there was fun and laughter.  Billy was punchy and witty.  He was joking around and always ready to fight back.  It was fun to see family and friends "messing with each other."  It sort of feels normal.


From Left:  Erin, my mom, Debbie (Erin's mom), and Billy. A few laughs and smiles after my mom ambushed Billy with a paper airplane (made from orange tissue paper).


The joking and fun and time with family and friends feels almost normal...except that all of it is happening in a hospital.

So what's ahead?  When will Billy be moved?
We're not completely sure.  He'll be at this hospital until his chemo treatment is finished.  He's on 3 kinds of chemo.  The 1st bag is done in an hour.  The 2nd kind takes 6 or so hours to finish.  And then there are 4 bags that take 24 hours each.  He started the 3rd kind (4 bags) at midnight tonight.

At some point, the army will have to evaluate Billy.  And then he'll have to establish a plan for long-term treatment somewhere.  We're just not sure where.  More to come on that...but he'll be here for at least 4 more days.

I'm beat...gotta head to bed.  But I wanted to share one final note.  In a world that so easily feels chaotic and out of control, I often feel powerless.  A friend shared something that spoke to me today, so I wanted to pass it along to you.

What Cancer Cannot Do...
corrode faith
shatter hope
destroy peace
silence courage
invade the soul
steal eternal life
conquer the spirit
cripple love
kill friendship
suppress memories

Author: Unknown

Thank you for praying and supporting and loving and just being in it with us!

What a Day!

Phew!  What a day...  It's amazing how so much can happen in one day, and yet it feels like an eternity.  The time crawls and flies at the same time.  We have good news to share!  Billy was moved from the ICU to the 5th floor tower today (the floor where cancer patients are treated).  It's a good move.  It's calmer up here, and he's sleeping really well right now (it's 12:00am as I write this).  His sleep seems deeper and more rested than it had been in the ICU--where there was always light and more noise.

It's nice to be on the 5th floor.  The cell signal is stronger, and Billy can receive texts and messages in the room.  We're also able to be in the room and get messages and texts.  It feels a lot less like a cave, less detached from the outside world.  There's sunlight too.  Billy hasn't said anything about liking his large window--but it's nice for the rest of us.  :-)

If you'd like to send mail, we have an address for you!

Will McCotter
8900 N. Kendall Dr.
5 Tower Room 5220
Miami, FL 33176

There were lots of visitors today!

• Trevor (a buddy from the Old Guard in D.C. who now lives in FL)
• Kelsey (a friend from D.C.)
• Nate (all the way from Germany, and he really surprised Billy!  I got to meet Nate and Melissa in April 2009, when we were in AL for Billy's promotion to Warrant Officer; it's really nice to see him again!)
• Uncle Paul
• Melissa
• Judy and Doug (Melissa's Parents)
• Pastor Matthias (Tyler and Melissa's pastor)
• Jill (Billy's and my mom)
• me :-)

And thanks to some amazing "support staff" who have helped us with anything we've needed.  We haven't had to worry about leaving the hospital at all.  They've brought us books, chapstick, food...anything we've needed...

• Adrienne (from AL)
• Laurie (Melissa's sister)

So how is Billy?
He's hanging in there...trying to "get through," as he says.  The move from the ICU was difficult and tiring.  Also, it's been an ongoing effort to get the pain medication dose right.  He's taking a painkiller that's 8x stronger than morphine.  His pain is never really fully gone, but it disappears enough for him to sleep.  About 45 - 60 minutes later, he wakes up and asks for another dose.  He's alert for a bit as the pain increases.  Then a nurse comes to give him another dose.  He drinks some water, and he's out again.

In the past few days, he had been throwing up a lot.  Every time anything went down, it would come up within 10 minutes.  This morning when we came in, Billy had a drainage tube in his nose.  It goes down his throat, and pumps out liquid from his stomach.  Whenever Billy drinks water, the liquid in the tube changes from dark green to clear.  In other words, whatever Billy ingests comes right back out.  He's still not getting any nutrition, because the cancer is so strong, and his stomach is under huge duress.

New Treatment
So with that in mind, Billy has decided to start chemo.  He knows it's a poison in his body, but he doesn't see any other choice.  We're hoping that the chemo will halt the cancer enough so that Billy can start holding onto nutrition.  Pray that it works!  We're also giving Billy some supplements that we're hoping will help him to heal.  Pray that his body absorbs things, even if the nutrition is in his stomach for only a few seconds or minutes.

I have so many thoughts and questions these days.  There's so much to read and research, to try to figure out what's best.  It's hard to process it all.  During some moments, it's really fun to have everyone together.  The picture below was taken soon after Nate and Kelsey arrived.


From the left:  Melissa, Kelsey, Nate, Jill (Mom), Doug Lyew-Ayee, and Billy


(Note:  People always ask about the "leg things"...they're compression cuffs that help keep his blood circulating and prevent blood clots in his legs.)

At that point, the room was full of energy, and Billy seemed pretty excited to see everyone.  Even though the pain medication makes him tired, he fought to stay awake to be with people.  After he slept, we would all tallk and hang out.  It's good time to be together.

But then moments come that are harder.  I remember that we're in a hospital, and Billy is lying there in a bed with tubes and wires all over him.  I remember that there's a horrible disease inside trying to take his life.  Then, it gets hard.  When my mom told me his diagnosis last Thursday, the world seemed to come to a halt.  The only word I could say was, "No!"  And I couldn't seem to believe that it was possible for him to have such a thing.  Being here, I have something to do.  I try to help the nurses as much as I can.  And when Billy needs water, chap stick, his cell phone, anything...I try to be on top of it.  The past three days have been filled with looking out for him.  I'm so focused on that, I forget that life last Wednesday wasn't like this.

In thinking about the future, life feels hard.  Billy's situation isn't good.  Yes, he has made some progress.  I think we've found a pain manament regimen that's working.  The anti-nausea medication finally seems to be helping.  And he seems to be resting well tonight.  But he still can't keep anything down, and that's the serious part.  He NEEDS nutrition if his body is going to heal.  He NEEDS nutrition in order to be moved anywhere (and we still don't know where) to receive further treatment.  But in order to get nutrition, his stomach has to stop revolting.  We're starting chemo tomorrow, hoping that will work.  Please pray for it to work!  And not just to work, but to work quickly and effectively.  Pray for it to knock out as much cancer as possible, so that his body can hold onto healthy food!

Thanks again for all the prayers and support.

Oh, and one more thing I almost forgot!  We have a way for you to help, if you want. Krystian is trying to get together a care package for Billy, and he's putting together a digital picture frame. Could you dig up whatever pictures you'd like to include and send them to msmarcy1223@aol.com? He needs them by 9pm CST on Wednesday, September 29. Thanks!!!

Questions

There are lots of them.  Why does a 25-year-old guy have cancer?  Why Billy, of all people?  Why didn't they find it sooner?  Will he be moved anywhere else soon?

As I've talked with many of you over the past few days (I know, it's hard to believe we've only known about this for 2 days), we're discovering more questions than answers.  For now, I wanted to share some of the answers that we do have.

How's Billy doing?
The answer to that--for now--is he's hanging in there.  He does have some fight in him.  Yesterday, he heard word that they'd be removing his breathing tube.  It seemed like it was taking forever!  They told him they'd need to shut the machine off, and then they could take the tube out.  Once they finally shut the machine off, he yanked out the tubes himself!

He is very sick, however.  The pain medicine makes him nauseous.  He gets pain meds every hour.  Almost immediately, he throws up.  And then he falls asleep.  He wakes up every once in a while.  Sometimes, he talks.  But he's thirsty and sleepy.  And he watches the clock for when the pain meds can come again.  Sometimes, it feels routine.  More often, it's hard to watch.  My brother should not be laying there like that.

So, was Billy sick for a while?  Where did the cancer come from?
Who knows where it came from.  Lots of times, it's hard to detect right away because the initial symptoms are indigestion and a loss of appetite.  When a 25-year-old guy has indigestion, you don't think much of it.

Billy said that his stomach cramps started when he finished flight school, around mid-August.  We saw him over the weekend of August 21 in MA for our cousin Kelly's wedding, and he seemed fine.  My parents and I saw him again in AL at the beginning of September for his graduation from flight school.  He was still having occasional stomach cramps, and had lost his appetite somewhat.  He said he had lost about 10 pounds since flight school ended.  We talked about it a few times as we'd eat together, and we thought he might have an ulcer.  He thought so too, and he stopped drinking soda to try to cut back on the acid he was eating.  He wanted to wait to get it checked out until he got to Hawaii.  At the time, the cramps didn't seem all that bad.

Billy was with Melissa and Tyler this past weekend in the Florida Keys.  Melissa said she noticed that he ate less and less over time.  On Sunday, he ate a little bit of spaghetti, and that was it.  (He hasn't eaten since then.)

On Monday, he went to the ER.  On Thursday, he was diagnosed with stage 4 stomach cancer.  It's so advanced because the symptoms didn't get strong until now.

We don't know where it came from or why.  Stomach cancer can be genetic, but there's no history of it in our family.  We don't really have any more answers than that.

Where is Billy?
He's in the ICU in Baptist Hospital in Miami.  He will be moved out of the ICU to a room "upstairs" as soon as a bed is available.  The move from the ICU is a step in the positive direction!

How long will Billy be in Miami?  Will they move him soon?
Billy is currently a Warrant Officer in the army.  So we're waiting to hear back from the army regarding treatment recommendations.  We can go with what the army suggests, or we can go somewhere else.

In the meantime, we're researching the options.  We're not sure where he'll be treated, what it will cost, and how much will be covered.  There are lots of questions.  I'll get to the treatment questions in a minute...

Regarding moving Billy, that depends on treatment.  But it also depends on his condition.  Right now, they're trying to regulate the pain.  The pain is strong and fairly constant.  Billy is getting medication every hour.  It's quite intense, and makes him throw up.  So he hasn't been able to eat anything for almost a week.  His condition is "not stable" due to those facts.  The doctors want to regulate his pain before he gets moved anywhere.

But he needs to get somewhere for treatment (maybe here, maybe somewhere else).  So he may be here briefly, or he may be here for a while.  Billy will be wherever the treatment option is best.

What are the treatment options?
Billy's version of cancer is very advanced and very aggressive.  The doctors here say they can't operate to remove it.  We can try chemo to try to knock it out--but every patient is different.  Some patients respond really well and really fast to chemo.  Others don't.  We won't know until (and that's if) we try.

(Note:  With cancer, chemo can help, but it doesn't always.  As the nurse said this morning, there are "atom bomb versions" and there are "sniper versions".  You don't want to hit him with an atom bomb if it's the wrong kind.  So we want to figure out exactly what he needs and go for that.)

There are stories out there of people being miraculously healed of cancer, if they change the kinds of things they're putting into the body.  But Billy is in so much pain at this point that he needs pain meds.  And the pain meds are making him throw up.  So it's hard to put anything good into the body.

It's hard to say what's best.  Ultimately Billy will get to decide what treatment he gets.  We do have some leads, but it is the weekend.  Please pray that we'd get connected to people in places of power who will help us get answers quickly!

I will address more questions later.  Feel free to keep calling and texting.  I am answering Billy's phone, so if you call, don't be surprised to hear a woman's voice.  :-)  I will relay messages to him.  There are some visitors coming...  Christy is here now.  So is Melissa, as well as her brother and dad.  Matt is on his way.  Trevor should be here later.  More are coming tomorrow...  Thank you for coming to see him!