Wednesday, October 6, 2010

Medicine Hospitals Can't Provide

Struggling and Hoping
As you know from the last post, my brother, Bobby, is here now.  (Actually, that’s not entirely true…because “here”, for me, now means Washington D.C.  I arrived in the D.C. area tonight, and I’m staying with a friend.  But I’ll get to the D.C. part in a minute.)  As far as the situation in Miami goes, Bobby arrived at the hospital around 6:30pm on Sunday night.  He took in the scene and jumped in to help Billy as much as he could.  But there was little he could really do to solve anything.  Billy has been fairly sick for the past few days.  The NG tube has been utterly frustrating (getting clogged with super-thick mucus), and Billy’s pain level has been high.  We’re pretty sure the chemo has kicked in.  Billy has been very tired, and his hands, feet, and lips are peeling a lot (which they said would happen with chemo).  Additionally, his white blood cell count recently dropped (which they said might happen with chemo), resulting in an increased need for caution on our part.  If the white blood cell count goes down, it means his immune system isn’t totally up to par.  Translation:  If you’re sick, it’s best not to be in Billy’s room.  And you should wash your hands before you touch Billy or give him anything.  Fresh flowers aren’t a good idea, either.  They’re pretty, but they increase the risk of bacteria in his room.  There’s a lot of tough stuff going on for Billy, and it is hard to watch.

During Bobby’s first few hours here, he commented on how different the blog was from life “on the ground” at the hospital.  So I asked him to put some of his thoughts in writing…

When I first read the blog and heard the news about Billy, a Hollywood-esque picture came to mind of Billy fighting an epic struggle.  Pictures of him smiling and greeting people as they came to help him bear his burden passed through my head.

When I arrived and saw Billy today I found my fabricated image to be far off from reality.  I went to give Billy a hug and it was a struggle for him.  I see the pain in his face as he sits in bed and am next to powerless to help him.

There is no epic soundtrack, no cheers of a small success that will lead to an eventual victory.  I feel beyond powerless. I feel lost.  I don't have anything to offer but to simply be here. I wonder if that will be enough...

I think we all wonder that.

In a world that tends to be critical and skeptical, I am striving to be hopeful.  For all of us, the world as we know it fell apart sometime in the last two weeks as we heard news of Billy’s diagnosis.  How can that be?  we wondered.  How could such a thing happen to Billy?

Cancer.  The word is so jarring and harsh.  It doesn’t make sense for a 25-year-old.  Not a newly-decorated Blackhawk pilot.  Not a guy who is so easy to love and so fun to be with.  Not Billy (or Cooter, or Will, or Mac, as many of you know him).  As we look around the oncology floor at Baptist Hospital, we feel a bit out of place.  All of Billy’s neighbors are at least 60 years old.  He doesn’t seem to belong here.  He’s too young.  This doesn’t seem right at all… 

I started reading a book today.  It’s called Anticancer:  a New Way of Life.  It was recommended to me by a friend.  Her boss’s brother had been diagnosed with some scary form of cancer.  One of those advanced, incurable kinds of cancer.  The guy is now cancer-free, healthy, and loving his life. 

All of this brings up a point of tension in me.  Who can I believe?  The doctors who say there’s a limit to the time left, given the diagnosis and the aggressive nature of this cancer?  Or do I believe the story of my friend’s boss’s brother, a guy who I’ve never met?  Doctors told him that his days were numbered—and somehow, he defied them.  Is such a thing possible for Billy? 

Well, I read something in the book today that struck me, and I wanted to share.  The story is from Anticancer (David Servan-Schreiber), chapter 2.  It’s about a guy who discovered that he had mesothelioma (cancer) of the abdomen.  When he asked his doctor about the best technical articles on the disease, she told him that the articles on the subject weren’t really worth reading.  He decided to read them anyway, and discovered some terrible news:  “mesothelioma was ‘incurable,’ with a median survival time of eight months after diagnosis.”  (Servan-Schreiber 17)  But then the guy started thinking…  If the median survival time is eight months, then some people die sooner.  But that also means that some people die later.  And some die much later than eight months after diagnosis.  He started thinking that maybe he could be one of those patients who lived a long time after diagnosis

That’s how I’m thinking about Billy.  Bobby is right.  This isn’t a Hollywood film, where you know the suffering is going to turn out all right in the end.  This is real life, and watching your brother battle with cancer is gut-wrenching.  My mom keeps saying that “Billy’s in the fight of his life.”  It’s painful to watch him struggle—but we’re all rooting for him.  And any sign of hope, no matter how small, is worth celebrating. 

I have watched as family and friends have come to visit, and their presence has been a form of medicine.  When he has enough energy to laugh, we celebrate.  He has been witty and fun, even with an annoying NG tube down his throat. 

Even during the past few days, when Billy was so tired that smiling was difficult, I could tell that the presence of Tyler was helping him to heal.  On Monday night, Billy was sitting on the edge of his bed, in pain and exhausted because he has been unable to sleep.  Tyler sat in the room and talked and joked with him.  Tyler would say something to try to get a reaction out of Billy—but Billy didn’t have the energy to “fight” back.  It was hard to watch, because this isn’t the picture of the Billy we all know.  But it was beautiful to watch—because it was a picture of one brother loving another.  I saw one man being willing to suffer—to be with his brother through misery.  I know Tyler would hardly call that suffering; instead, he feels like he finally has a chance to give back to the man who has given so much to him over the years.  And I see something healing in Tyler’s willingness to care for my brother. 


Tyler, Billy, and Nate (September 29, 2010)

I think there is medicine that hospitals can’t provide.  I think I’ve seen it quite a few times over the past week or so…

The other day, my mom was standing behind the head of Billy’s bed.  She had reached her hand out, and was running her fingers through his hair.  He closed his eyes.  The look on his face was one she didn’t understand.  “You okay?” she asked.  “Yeah,” he said, “just appreciating human touch.”  I almost broke.  There are countless drugs and solutions dripping into my brother’s body, but not one of them holds the same power as my mom’s hand running through Billy’s hair.

Another afternoon, as we talked with the chemo teacher, I stood between Billy’s bed and the window, my hand on the bedrail.  The severity of Billy’s condition hit me head on.  I looked away, out the window, knowing that I needed to be strong for Billy.  I didn’t want him to see me cry.  As I felt the tears run down my cheeks, my back to my brother, I felt a hand reach out to cover mine.   I had turned away to hide my pain—but Billy knew, and he reached out to comfort me. 

There is something vital in being in this together, and in helping each other to hope.  There is something incredibly important in friends and family surrounding Billy—both for Billy and for all of us.  Servan-Schreiber says in Anticancer, “in nature, the median is an abstraction, a ‘law’ that the human mind tries to impose on the diverse profusion of individual cases.”  (17)  This cancer business isn’t something we can control or predict.  But there is the possibility that this thing could turn out really well for Billy.  We’re continuing to hope for miracles, and we will celebrate any victory—no matter how small.

Some Victories Worth Celebrating
Billy is moving to D.C.!   Granted, this has been quite the fight to get him to D.C.—and he’s not in D.C. yet.  But I’m in D.C., and Billy will be on his way shortly.  On Tuesday, we received official word from the army that he would be moving within 24 hours.  I am planning on meeting him and my mom at the hospital sometime on Wednesday. 

This story is well-worth telling, but I will save it for another post.  This post is already long enough.

The past few days have been difficult--but I hear that Billy slept for 9 hours straight today!  (That hasn't happened in a LONG time!)  He's still throwing up (the NG tube has been removed to give him some relief), but he's holding down water.  He had enough energy to go online today--which he hadn't done in several days.  For the past few days, he's been so tired, he has fallen asleep while sitting up.  He's also been in some significant pain, a lot due to the increasing amount of fluid in his abdomen.  But his white blood cell count came back up enough to drain the fluid again, so they took care of that today.  We think that's one of the reasons he was able to sleep so long.

There is more news to come...  So stay tuned for details regarding the move.  In the meantime, here are some ways you can pray:
  • Safety—as they transport Billy and my mom by air, and as my brothers (Bobby and Danny) drive Billy’s car from D.C. to Miami
  • Rest and Health—for all of us, and especially Billy
  • A safe and smooth transition from Baptist Hospital to Walter Reed
  • Billy’s new medical team—that he would have a team of physicians, nurses, and others who are willing to do whatever they can to give Billy the best life possible
  • Wisdom for the decisions ahead—regarding treatment and setting up life in D.C.


Also, the last time Billy moved (from the ICU at Baptist Hospital to the 5th floor), it wiped him out.  We’re expecting that this move will do the same sort of thing.  I know many of you are longing to come for a visit, and we’d love to have you.  However, if you could wait a day or two, until we get settled in and Billy has a chance to rest, that might be a good idea.

One final note…many of you have asked about my other brother (Chris) and my dad.  Where are they?  Chris is attending to some work obligations out west, and my dad is doing what my mom calls “holding down the home front.”  He and my mom own their own business, and my dad is at home in Colordao keeping that going.  There are plans for him to come visit at some point—though all of that has been on hold until Billy gets moved to D.C. 


Our Family. From Left: Billy, Chris, Danny, Michelle, Bobby, Jill, Ken. (June 20, 2009)

Thanks for all the love, prayers, and support.  You all are an amazing group of family and friends. 

6 comments:

  1. here's the set up: George Muller is on a boat and he's got to get to shore by sat. BUT there's been a fog for 24 straight hours, so bad the captain has been staying up all night long to make sure the boat don't crash. George comes out to the captain Charles Inglis, Captain, I have to be in Quebec by Saturday I have an appointment. Captain: That's impossible.
    George: Well if you won't take me, then God will make a way.
    Let's pray. George asks God to clear the fog. Captain goes to pray: George says, nope, you don't need to cuz you don't believe and God's never let me down.

    Now i'll quote directly. Captain: "Mr. Muller," I said, 'do you know how dense this fog is?'
    George: 'No,' he replied, 'my eye is not on the density of the fog, but on the living God, who controls every circumstance of my life.' He knelt down and prayed one of those simple prayers...Captain, I have known my Lord for fifty-seven years, and there has never been a single day that I have failed to get an audience with the King. Get up and open the door, and you will find that the fog has gone.' I got up and the fog was indeed gone. George Muller was in Quebec Saturday afternoon for his engagement."
    -From I Will Lift Up Mine eyes by Glenn Clark

    This has encouraged me to keep my eye on the Living God.
    I love you!
    ~jen

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  2. Continuing to pray and trusting whole-heartedly that our God is a BIG God. His hands are on Will, and all of you.
    Thank you for continuing to share with us. Thank you for allowing us in.

    xo*tricia

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  3. Prayers from here that "THY Will be done...." Keeping the faith with you all..(and faith has no - geographical - boundaries..)

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  4. Michelle, So sorry to hear about your brother. But so glad you and your family get to be with him. Praying for you all!

    Erin stine

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