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!

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.