Discoveries

It has been quite a week of ups and downs!

Monday was a hard day--difficult for us and difficult for Billy.  After weeks of small improvements every day, it was difficult to watch Billy struggle again.

Several weeks ago, Billy successfully completed a CT scan with contrast.  The whole process was amazing, really.  Being off of the NG suction is difficult for Billy.  The fluid backs up in his stomach and makes him nauseous.  Several weeks ago, despite that, Billy was off of NG suction for 7 hours!  He ingested 700mL of contrast and kept it in.  And the CT scan was successful.

On Monday night, after a rough day, a new NG tube, lots of nausea and some vomiting (sorry for the graphic detail), a CT scan with contrast seemed impossible.  Billy tried anyway, but it just wouldn't work.  His stomach refused to tolerate it.

They tried again on Tuesday.  Billy kept 100mL of the contrast in, but that was it.  It wasn't enough for a CT scan with contrast, but they took a scan anyway.

We were hoping the scan would show positive results:  a reduction in Billy's tumor and some large pockets of fluid that could be drained.

Even though Billy wasn't able to keep the contrast down, the scan was clear enough for the doctors to see what's going on.  Yesterday, we heard the results, and the results were mixed.  The scan showed four things:

1. The infection in his left side is smaller.  (The catheter is doing its job!)
2. There is no large pocket of fluid in his belly.  This raises a question:  why is his belly so "distended" (full)?  
3. There is more fluid under his left lung than under his right lung.  This raises another question:  why is his right side pinching so much?
4. The small bowel is more swollen that it was the last time, so they think it's probably obstructed.  A question remains:  what is causing the obstruction?

So what does all of this mean?  
It goes back to Billy's diagnosis.  Poorly differentiated gastric adenocarcinoma is an incredibly difficult condition to treat.  Scientists have made huge advances in cancer treatment over the years, but very little progress has been made in the realm of gastric cancer.  In patients who have Billy's particular version of gastric cancer, 3 types of chemotherapy are used together.  More recently, herceptin has been found to be effective when used in combination with the 3 kinds of chemotherapy.  However, herceptin, when used alone, has very little killing power.  It can slow the cancer, but it probably won't do much to kill it.

Why not use chemo and herceptin for Billy?
Simply put, Billy's body isn't strong enough for chemo.  Billy took one round of chemo in Miami, and it was very destructive.  Billy's body is too weak, and the chemo is too hard on the liver and the immune system for Billy to be able to tolerate it.

Those are the facts--or what we know to be the facts right now.  But in this world, things can change quickly.  Billy is doing well, but as we saw on Monday morning and again today, slight changes can make a whole day feel hard.  When the NG tube gets blocked up, Billy feels nauseous, and the activity in the room becomes about clearing the blocked NG tube.  When his side pinches, conversation stops as he gets his pain under control.  Billy was all set to go outside today (the first time since he arrived on October 6), but his side pinched too much during his morning walk--and the focus on the day became about getting his pain under control.  All of us--the doctors, the nurses, and his family and friends--are doing as much as we can to take care of Billy.

But we're starting to come across questions we can't answer.  The doctors don't know why Billy's right side is pinching.  It doesn't seem to be the liver or the gall bladder.  The doctors think it's from pressure further down his side, from inflammation caused by the cancer.  There's very little room in his belly for the fluid to build up anymore, and hence there are no pockets of fluid they can drain.

At this point, there aren't any drastic measures that we can undertake to fight Billy's cancer.  We can do things to improve Billy's quality of life, and that's where the doctors are focusing their efforts.  There's plenty of pain medicine, and a lot of different options.  There's benadryl for the incessantly itchy skin.  Herceptin is an antibody that is generally well-tolerated, so Billy can keep taking that as long as his heart stays healthy.  But outside of a miracle, the cancer will eventually win.

It was hard to type that last sentence, and thinking of publishing it makes the tears come.  It's not something we ever expected to face.

So in the meantime, in the limited time we have, we're trying to savor every day we have.  Every day we have is a miracle.  I'm treasuring the time I get to spend with Billy and with my family.  And I'm discovering some of the things that make us who we are...

• This September, my parents and I went to Fort Rucker, AL, for his graduation from flight school.  On the morning of graduation, my dad handed me a box.  "That's from Billy for you to wear to the graduation," he said.  It was a necklace.  A set of wings.  Billy had two of them made--one for me and one for my mom.  

Billy's graduation gift for me.

When I saw Billy later, I asked him about it.  "It's your graduation, silly," I said.  "I'm supposed to be buying you a gift!"  He disagreed.  "You came to visit me," he said.  "And that's enough."  That's Billy for you--always a giver.

• I went in the family room last night to wash the crock pot after I had made chili.  (Thank you for the ingredients, Sara!)  All the dishes had been washed.  I asked Bobby and Danny about it, and all evidence pointed to my mom.  She's so sneaky sometimes!  

• Several weeks ago, my mom and I had gone to get massages at a local spa, courtesy of Walter Reed.  I was supposed to have a pedicure that day, but something got messed up, and I wasn't on the schedule.  So my mom decided to give me a pedicure last night, and it was awesome!  

A pedicure...just because my mom wanted to give me one!

• Yesterday, my mom went to Dunkin Donuts to get my favorite coffee.  Later that morning, as I was drinking my coffee, Bobby and Danny showed up for the family meeting.  Bobby was carrying a cup of coffee.  He extended the cup, saying "This is for you, 'Chelle."  He had made coffee in the French press, and added sugar-free hazelnut and half-and-half, just the way I like it.  I didn't know what to do with 2 cups of strong coffee--but I felt incredibly blessed and loved.

We're a family of givers, and I love it.

Ways to Pray

• For miracles.  For the impossible.  For us to continue to be hopeful.  
• For special moments as family and friends.
• For endurance in this journey that has no definitive timeline.
• For the pain in Billy's side to dissipate.
• For Billy to be able to go outside.  
• For Billy to be able to celebrate Thanksgiving.

Thanks for everything! For the friendship, hugs, notes, groceries, money, encouragement, prayers... We could not do this without all of you!

Cookies!

Just the other day, Bobby, Danny, and I were getting coffee at Whole Foods Market, and we spotted some packs of Cowboy Cookies and Cowgirl Cookies!

Seriously?  Cowboy Cookies and Cowgirl Cookies at Whole Foods?

I couldn't believe it, so I quickly scanned the list of ingredients on the back.

The Ingredients List

I know the font in the above picture is a bit small...but if you'll look closely, you'll see why I was immediately disappointed.  Palm Fruit Oil?  Who bakes with that?  And we certainly didn't use Vermont Well Water in our family recipe.  Nothing against the Cowboy Cookies at Whole Foods, but they're not the real deal...

...which leaves all of you at a dilemma, doesn't it?  How in the world will you get to experience the wonders of our family's favorite cookie recipe?  Now, it's not common practice to give out secret family recipes, but we've decided to make a concession.  Since we're all in this thing together, and many of you have become like family anyway, we figure the least we can do is share the recipe.  So here it is.

Cowboy Cookies
Recipe From:  Melanie (my mom’s friend whom she met when she moved to Colorado years ago…)
Makes:  5-6 dozen (which, of course, completely depends upon the size of cookies you're making!)

Ingredients
1 cup shortening or butter
1 cup white sugar
1 cup packed brown sugar
2 eggs
½ tsp vanilla
2 cups flour
½ tsp baking power
¼ tsp salt
1 tsp baking soda
2 cups regular oats (not quick oats)
1 cup (6oz) semi-sweet chocolate chips

Instructions

1. Preheat oven to 325° F.
2. In a large bowl, cream the shortening.
3. Add white and brown sugar, and mix.
4. Add eggs and vanilla.  Beat.
5. In another bowl, mix flour, baking powder, salt, and baking soda.  Stir into batter.
6. Add oats and chocolate chips. Mix well.  (A strong wooden spoon works well at this point.)  
7. Drop onto ungreased cookie sheet.  
8. Bake for 10-12 minutes.

The perfect Cowboy Cookie.  Yum!

Cowboy Cookies...slightly more brown and crispy. They should never be darker than this.

These are the "flat" version of Cowboy Cookies. If  they're this flat, you may need to increase the flour or decrease the sugar.

Cowgirl Cookies
My mom—ever the creative cook and baker—decided to try a variation.  She left out the chocolate chips and added 1 tsp of cinnamon, plus 1 cup of raisins.  The result was amazing, and so we came up with a name.  As girls are made of “sugar and spice and everything nice,” we settled on Cowgirl Cookies.

Some things we’ve discovered…

• We grew up in Durango, CO, where the official elevation is 6,512 feet.  We’ve discovered that the cookies bake with different results in different places.  This cookie recipe has been perfected for the high elevation of my mom’s kitchen.  When I’ve made these in the low-lying “mountains” of Pennsylvania, they’ve come out a bit more runny and crispy.  So if you’re in a lower elevation, you may need to make some modifications.  You might try using ¾ cup of both sugars, instead of a full cup.  
• The definition of a perfect Cowboy Cookie depends upon the preference of the taster.  I love them when they’re a light brown color, sort of crispy, sort of chewy, and mostly soft.  If they’re a little doughy when they cool, that’s perfect!
• The cookies are great as chipwiches!  Just take two similar-sized cookies and place a scoop of ice cream between them.  Freeze, and you’ll have a perfect snack for later.

Cookies for Billy
Before all of this happened, I was planning on making some Cowboy Cookies for Billy's birthday, and sending them to Hawaii, so they'd be there when he arrived.

But Billy hasn't been able to eat since September 19th or so.  And his stomach still isn't working.  It's a bit disheartening to hear the doctors talk about his dysfunctional stomach and the possible block in his GI tract.  He'd really like to be able to eat, so would you keep praying that he could eat again?

Family Meeting
We had a family meeting today with Billy's medical team.  We talked about how Billy is doing and how everything is going.  Here's the big picture.

• Billy's cancer is still there.  It's "diffuse" gastric adenocarcinoma, meaning it's all over his stomach.  And it's also in the fluid around his stomach.  There are no established treatment regimens that can cure his cancer.  The medical team can do things to try to help Billy live with the cancer, but they can't cure it.
• Billy's infection is probably still there.  It's under control (his white blood cell count is normal), but he's still on a major antibiotic.  If his body becomes resistant to the antibiotic at any point, Billy could quickly take a turn for the worse.  At the same time, the doctors didn't expect him to do as well as he's been doing.  So no one knows how all of this will go.
• Billy is not a candidate for chemo, for several reasons:  (1) He probably still has an infection, and chemo is incredibly hard on the immune system--not a good combo.  (2) His liver function hasn't been stellar.  Chemo is also hard on the liver.  
• Billy's body did not like the first round of chemo.  It responded very poorly (with a septic infection and a depleted immune system).  More chemo would be too harsh right now.  

Given all of this, there is a new option!  In some kinds of aggressive cancers (breast and stomach), some patients have an amplification of the HER2/neu gene (simply said, "her 2").  In these cases, an antibody called herceptin has been effective when used in conjunction with chemo.

Billy's cancer has the HER2/neu gene.  Normally the gene is present in a 1:1 ratio.  Billy's ratio is 2:1.  So...the oncology team here wants to try herceptin alone, to see if it would do anything.   

How Herceptin Works
In some gastric cancer cells, the tumors overproduce a receptor protein called HER2.  These proteins promote growth and survival of cancer cells.  In some tumors, there's an overabundance of these receptors.

Herceptin is an antibody that latches onto the receptors and sends signals to the immune system to promote destruction of the cells.

http://curetoday.com/index.cfm/fuseaction/media.showSectionArtwork/section_id/4306

There's some risk involved, as there are other cells in the body that have HER2 receptors.  (The heart has many of these cells.)  So it would be good to pray against adverse side-effects.

Billy has decided to pursue treatment with herceptin.  So that's the next step.

How to Pray

• Billy's stomach to start working.  There may be some kind of blockage.  His intestines are experiencing what the surgeons call ileus.  They're "paralyzed" or obstructed.  This needs to change if Billy is going to eat again.
• God to completely heal the infection.  Enough said.
• The herceptin therapy to work, and the cancer in Billy's stomach and abdomen to shrink and disappear.  
• Perseverance in this "marathon."

Thanks for praying!  Thanks for all of your visits and messages.  They're helping to keep us going.

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.

The Current Situation

It is hard to put all this into words, and when I try to make sure the words sound okay, I get stuck.  So I'm just going to write...

Billy is my brother.  He's 25.  A newly-awarded blackhawk pilot in the army.  He just finished flight school in Alabama, and is on leave until mid-October, when he is supposed to report to Hawaii.  He's been visiting friends, and had plans to stop and see several of you.  As we all know, sometimes life doesn't go according to plans.

There are many details in this story.  I will give the basics now, and share more in future posts.

Billy (or Cooter, as many of you know him), just spent the past weekend in the Florida Keys with friends.  He was losing his appetite, and his stomach was hurting more and more.

Tyler and Melissa went with him to the ER on Monday.  They found lots of fluid in his abdomen, some sort of mass, and a bunch of "nodules."  He had a CAT scan on Monday.  They drained 2 liters of fluid from his abdomen on Tuesday, and did another CAT scan.  They saw a bunch of masses in the CAT scan, but weren't sure what all that meant because of the fluid.  On Wednesday, they did an endoscopy.  During all this time, he was on pain meds, and the frequency started increasing.  But the pain meds are harsh, and they made him throw up.  He's been throwing up since Monday night.

Billy was diagnosed with poorly differentiated gastric adenocarcinoma on Thursday morning.  In basic terms, that means stomach cancer.  It's in stage IV (highly advanced).  The doctors say it's incurable and inoperable.  It's too big and too far spread to get it out.

We have lots of friends and family with connections trying to help out with information and options.  And we're trying to filter through everything to make the best choices for Billy.  At this point, he's in a lot of pain.  He's hot a lot of the time, and he's very thirsty.  He's now on pain meds every hour (instead of every 4), and he's counting down the minutes until they can give him more meds.  We're trying to get some nutrition into his system, as he hasn't eaten since Sunday.  His body needs nutrients if it's going to heal.

If you pray, here are some things we need:

• We're going to try to sell his car (which he had planned to do in preparation for going to HI).  Pray that we'd get an excellent price for it.
• We're working on alternative options for treatment.  Pray for us to know what's true, and what's the best.  Pray for healing.
• We want to get a 2nd opinion.  Pray that we'd find gracious people who are willing to go above and beyond expectations to advocate and fight for Billy.
• Billy is in a lot of pain.  Pray for his body to settle down, the medical staff to find the best pain medication possible, and his body to hold onto any nutrition that we're able to get in him.  Continue to pray for healing.

We're heading out now.  I will update more later when we're able to see Billy and I have more information.

Thank you for all of your prayers and support.