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!

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.