Difficult Days

As we walk this journey, I'm learning that some days are harder than others.

On Saturday evening, a bunch of us were hanging out with Billy.  We were watching T.V., laughing, and telling stories.  But I was having trouble joining in:  something wasn't quite right with Billy.  I looked across the room and made eye contact with Sam (one of Billy's friends who was visiting for the weekend).  I could tell that she was concerned too.  We had both noticed Billy struggling.  I asked him how he was doing.  He said he felt a bit nauseous, like the NG tube wasn't working quite right.  Eventually, he was able to overcome the feeling of nausea...but he still didn't feel all that great.

Yesterday (Sunday), Billy started feeling a sharp pinch under his right lung.  Every time he took a deep breath, he felt a pinch.  He said it seemed like some of the fluid in his belly was starting to accumulate under his lung.  It made breathing difficult, and it hurt.

Billy didn't sleep well last night, and this morning was worse.  We found out that Billy's NG tube had come out too far, so it wasn't working like it should.  The doctors tried--without success--to push it back in place, so they had to replace it.  The new tube is stiff and uncomfortable, and Billy's throat hurts so much he can't really talk.  The doctors are concerned about the pressure on his lung, so they want to take some "pictures" of what's going on inside his body.  Tonight, they planned to do another CT scan with contrast, meaning Billy's NG tube would be clamped off for several hours so that he could drink the "contrast" (dye).  Once he finished the contrast, he'd have to wait a few hours, and then go downstairs for the CT scan.  He had a scan with contrast done 3 weeks ago, and it took 7 hours.  3 weeks ago, those 7 hours felt like a long time.  Tonight, 7 hours without NG suction seemed like it would last forever.

What is a CT Scan?
CT scans can be done with or without contrast.  They give doctors a detailed image of the inside of the body; it's far more detailed than an x-ray.  When the scan is done "with contrast," it sharpens the images of the structures inside the body.

Billy's CT Scan
Billy tried to ingest the contrast, but it didn't work.  He couldn't keep the liquid down.  He was miserable and in a lot of pain.  It's just not going to work to do a scan with contrast today.  Billy is sleeping now (thankfully!), and they're going to try to do the scan again tomorrow.

What About Draining the Fluid?
The doctors need to see where the fluid is before they can drain it.  The scan will give them the images they need, so they can determine how--and if--the fluid can be drained.

When Will We Know If the Herceptin Worked?
It takes a few weeks for herceptin to have its effect.  It has been 5 days.  So we should know something in another 2 weeks or so.

How to Pray

• A restful night for Billy.
• That Billy would be able to tolerate the CT scan.
• That the doctors would be able to determine the source of Billy's pain, and that they would be able to help him.  
• That Billy's body would get rid of the excess fluid, or that the doctors would be able to get a clear enough image so that they could drain the fluid.
• Billy's stomach and intestines to start working, so that he could enjoy some of his Thanksgiving favorites.

Thank you for your support and your prayers.

Hurry Up! ...and Wait...

We got to the hospital around 11:30am today (Friday), and Billy was conked out.  Actually, he was wiped out for most of the day.  It turns out that there were a few issues last night—a blood clot in his port, waiting on doctors for orders for the anti-coagulant, and waiting for the anti-coagulant to kick in so the clot would go away.  It meant halting the flow of the chemo for a while, and then starting it up again.  Needless to say, Billy didn’t sleep much last night, so he was extra-sleepy today.

In the middle of all of this, we’re all getting tired—or maybe it’s just me.    When I’m tired, frustrating things seem even more frustrating, and funny comments make me laugh for a long time.  There were a few humorous moments today.  I’m going to attempt to capture them—but it’s hard to deliver the punch line well when so much of the humor comes from facial expressions and voice inflections.

Earlier this afternoon, one of the nurses was in the room, trying to help us figure out why the bottoms of Billy’s feet were a particular color.  He had just gotten back from a walk (yay!), and the bottoms of his feet were a dark reddish purple.  “I think it’s the chemo,” the nurse said.  “He’s on ‘something’ and ‘such-and-such’ and 5FU…”  In the middle her sentence, Billy interrupted.  “Wait.  What’d you call me?”  It took the nurse a minute, and then she realized he was messing with her.  In the middle of serious situations, his wit comes out, and everyone laughs. 

The conversation continued.  “There’s a side effect of chemo,” the nurse said.  “It’s called hand and foot.”  Again, Billy interrupted.  “So you’re telling me I’m going to get mad cow disease?”  Again, we laughed.  He delivers his jokes with such dead-pan humor.  His face says he’s completely serious.  There’s no hint of a smile.  He delivers the joke.  It takes us a minute.  We all laugh, and his face turns up in a grin.

Billy, on a walk with army buddies Trevor (left) and Chris (right).

At the same time, the day was a bit frustrating.  Billy still isn’t able to keep liquids down, so the medical team wants to figure out if there are any blockages in his GI tract.  They want to do an MRI.  However, MRIs use magnets to produce images, so if there is any metal in a patient’s body, an MRI isn’t a good idea.  Billy got hit with some shrapnel during the war in Iraq, so he did have some metal in his body for a while.  He thinks it’s all out now, but the physician wants to make sure before we get an MRI.  So we need x-rays.

As preparations were being made for those things, we started to notice some swelling in Billy’s right leg and foot.  The nurses were concerned about a blood clot, so they sent Billy down to the 3^rd floor for an ultrasound.  The procedure felt like it took forever.  I think they took him downstairs at 7pm.  He didn’t come back until 9:30 or so.  And that was just the ultrasound.  He still had the x-rays and MRI to have done.

I’ll spare you all the details.  The summary is:  the process was utterly frustrating.  I think we’re all getting tired (Billy especially), and the inefficiency of things sometimes feels like too much.  Tonight, Billy was really tired.  And he had to wait for 30-45 minutes for a nurse to come and move all of his machines from the transport rack to the “Christmas tree” (the rolling stand that holds the IVs), so he could lay down and go to sleep.  We finally said good night to him around 12:30am.  And he still hadn’t had his x-rays (though the nurse said that the x-ray tech would be coming tonight to take the pictures).  Frustrating.  Especially when you’re really tired, you have a tube down your throat, and there’s lots of stuff blocking your throat.

Update on Moving
We’re still working on moving to Walter Reed—but there are no conclusive plans yet.  It sounds like we won’t be moving this weekend.  Hopefully, it will happen early next week.  We’ll keep you posted.

Some Ways to Pray

• The first round of chemo is done!  Pray for it to knock out a lot of the cancer.
• An efficient transfer to Walter Reed.  Also, that Billy’s body would handle the move well and not be too drained.
• A place for my family to stay near the hospital in D.C. (assuming we go to Walter Reed).
• Billy has an NG (Nasal Gastric) tube in his nose and down his throat.  It helps to deal with his nausea, and the fluid building up in his stomach.  However, the tube doesn’t seem to be working right.  It causes a lot of discomfort, and makes breathing difficult at times.  Pray that we’d figure out what’s wrong, and that the tube/suction would start working right. 
• Rest and good health.  It’s hard to rest.  There’s a lot going on.  But we’re all tired.  Billy needs us to be healthy, because the chemo is going to attack his white blood cells (as well as the cancer), and we need to be healthy when we’re around him. 
• That Billy’s intestines/bowels would start working again—and that he’d eventually be able to eat food again. 

Thanks again for your prayers!

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!