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.