Dear Friends and Family,

Tommy is having a good day today.  We went to the hospital lab because the gastroenterologist wanted to check his electrolyte levels and liver numbers.  She feels that he might have an electrolyte imbalance, and this may be the reason why he is constantly nauseous.  I PRAY that the problem is that simple.  As stated in a previous post, all other digestive functionings are working; the unrelenting nausea and vomiting should not be happening.  I was just very glad that this doctor wanted to investigate the problem further.  She stated that he does NOT have a bile duct blockage.  If he did, he would be jaundiced and having acute abdominal pain, which is not the case.  In addition to going to the lab, Tom also went to get his hair cut from his favorite stylist at Great Clips.  I'm glad we were able to do this.  He looks nice and handsome.

While he threw up very early this morning, he was able to take a shower and go on these errands without throwing up at all.  I think he felt good being out and about.  He is now sitting in the living room, and we just finished eating lunch together... all three of us.  It made me happy, our doing this; it was almost like the old days.

I'm remaining strong, but I feel teary every now and then.  Our new social worker from the hospital came and spoke to us.  She also met TJ, who was his usual stoic self... his "meeting a stranger" persona.  Shortly after, friends came by with food and love.

All of this is a praise.  More later...

Love,

The Canterberry

Dear Friends and Family,

At this point, we must pray for a miracle.  Due to the methadone and dilaudid, which were prescribed for the bone pain, Tom's body has not been able to eliminate.  This is why all of this vomiting and nausea has occurred.  He has shared with many people now that he is tired of fighting.

His first bout with nausea and vomiting occurred on April 16th, right after his first radiation appointment, and it has been steadily worse since this time.  There have only been a handful of days when Tom has not thrown up since this time.  The radiation oncologist insists that radiation was not responsible for the nausea, and the gastroenterologists state that it has been due to the heavy opiates.  Between norco, morphine, methadone, and dilaudid, Tom's system has not been able to handle the narcotics, which halted all peristaltic movement in the intestines... all of which led to daily vomiting.

It is in my heart to see this situation turned around, but I am not the one experiencing this level of discomfort.  While Tom says it's fine to pray for a miracle, he is ready to go home.  Until the last hour, I will not stop hoping and believing, as I wish to cling to life... but this is not my race to be run.  I have had to learn how to accept that, without bitterness or regret, and simply love Tom today, for the time that he is here.

I don't know if any of you have any words of wisdom for us.  I know that God holds us all in His hands, and His plan may not be in keeping with what we want.  It will take everything that I have to trust Him, to stop worrying about what the future will hold without Tommy, and to accept that there is a reason behind all of this.  Again, love always hopes, and I haven't stopped hoping for a miracle.  However, if one doesn't come, I'm prepared to accept this.

My heart is broken.  Please pray for Tom, that a miracle will somehow happen that will give him the strength to continue; please pray for me, and for TJ.  Pray that all of us will have the strength to endure this as a family, with love and kindness in our hearts, and that we come together, hold Tom in our arms, and love the moments that he has with us.

Tom wants me to stop fighting for him, and to let him go.  He is tired and weary from drugs that have taken away the pain but have halted his system.  Please pray for wisdom, discernment, and loving compassion on my part as he struggles to find his way.

Thank you to all who came to our house last night to be with us, to Tiger, Jim, Jeannie, Shorty, Nick, Allie, and Amy... I know that Tom felt your love, and so did TJ and I.

Lord, please have mercy on Tommy.

Love,

The Canterberrys

Dear Family and Friends,

"'Get ready, 'Lizbeth!  This is the BIG one!"  For those of you who know me well, tell me the one thing that you NEVER, in a MILLION years, thought I would do for Tom.  Yes, that's right.  I handed him a freshly-rolled joint.  He was so miserably nauseous, it broke my heart to see him lying in bed writhing.  In fact, it's been breaking my heart every day.  A dear friend, who for these purposes shall remain nameless, suggested that I get a doobage and that this would be helpful in stopping the nausea and creating some kind of an appetite.  So, I called on a couple of other dear friends, one of whom came to deliver.

Again, those of you who know me understand that I haven't touched a drop of alcohol or taken a hit of anything since age 22.  And, of course, that still goes.  However, the Zofran pharmaceutical wasn't doing ANYTHING to help the nausea and vomiting, even though it was a highly-touted medication among the nursing staff at hospice.  In fact, it was completely ineffective.

Well, I couldn't see this sweet man starve to death while continuing to puke his brains out every day, and I was at a loss.  Tom seems more relaxed and has eaten a little more food, which is a real praise.  We'll see where this goes.  Tom cannot afford to lose any more weight, that's for sure.  The picture on this post shows Tom a few weeks before the diagnosis.  Since then, he has lost 35 pounds... in about a month and a half.  Granted, a lot of it is in muscle from not being able to move around while he was in excruciating pain; but now that the pain is under control, the nausea and vomiting has shrunk his waist size and made the weight loss more extensive.  Of course, my friend Amy was quick to point out that Tommy's face is still very pretty and his cheeks are so sculpted, and I do agree!  However, he's got to start eating, and if lighting up a joint will help with the nausea, then that's what we've got to do.

Folks, it's been really hard to come up with a compromise between symptom suppression and symptom relief.  The former technically doesn't solve anything, but makes you want to keep trying.  The latter technically DOES solve something, but might put you through a bit of hell because it attacks the CAUSE of your problems first.  You know the old adage of "it get worse before it gets better."  Nothing could be more true.  Tom has been puking up some very nasty materials from all this cleansing, and now that the vomiting has calmed down, he needs to eat.  But, who can blame him for being afraid to eat after all of this?  Anyway, I'm learning a lot about how to meet people where they're at.  I can understand how someone wouldn't want to keep fighting through non-stop misery, and we are working hard to strike a balance between suppressing symptoms so that we can solve underlying problems.

Thank you for checking in, and please let Tom know that he must always keep faith and hope.

Love,

The Canterberrys

Dear Friends and Family,

Tom ate this morning!!!!  🙂  And, didn't throw up!  And it's already 11:15 a.m.!

It's amazing how the little things in life make us so happy!  Please continue praying for us:  for fortitude, hope, perseverance, and... to quote Chris Farley's SNL character, Matt Foley:  "A PMA!  Positive Men'al Attitude!"

We have our gastroenterology consult tomorrow night at 7:30 p.m., as I asked for an earlier appointment.

Tom is trying to decide whether he really wants the hospital bed they're bringing him; I don't blame him for not being sure about this.  Psychologically, it's kind of crossing over a threshold.  That's a tough one, huh?  If you have any opinions, we'd like to hear them, so please post on our "Guest Book" and let us know what you think.

Stay tuned, keep us in your prayers, and pray that we continue to embrace these challenges.

Love you all!

The Canterberrys

Dear Family and Friends,

Disclaimer:  this particular post is for those who don't mind reading about graphic medical details.

First, the good news.  Tom's mobility has been/is improving, particularly in both of his arms.  The right arm, especially, was a real mess; it was simply hanging out of it's shoulder socket, with the right hand ending in a virtually immobile claw.  This is no longer the case.  Tom is moving around, can sit up, and is able to take care of himself far more extensively.  This was not the case prior to a week after radiation was completed.  He is also maintaining good color, and has normal vital signs every time the hospice nurse visits.  Finally, Tom is no longer using Prilosec, AND he has slept through the night for the last two nights, without any need to go to the bathroom.  All of this is incredibly encouraging.  So let's take stock and give praise for these very positive developments.

Now for the positively puzzling situation regarding Tom's digestive tract.

Tom has been on pH water of 9.5, Essentia brand, but has been eating very little food.  Reason:  there has been excessive vomiting, nausea, tremors, and hence, no appetite for anything.  Even the water was causing nausea and vomiting.  The radiation oncologist insists that radiation was not responsible for this problem (although it was listed in their general brochures as possible side effect), because she said the low dosage, and location of the radiation, would not cause nausea and vomiting.  Thus, we had to look at other factors.

After having read that nausea, vomiting, and tremors could be the result of excessive alkalinity in the blood (alkalosis), we ceased using Essentia water (temporarily, at least) in order to see if Tom's symptoms would improve with filtered tap water and distilled water.  The rationale behind this was that alkalized water is incredibly cleansing, but paradoxically not very hydrating.  In other words, there needed to be a balance between cleaning (alkalized water) and flushing (plain water).  Tom appears to be doing a bit better, particularly with the tremors, which have lessened considerably after his second day of filtered tap water.  However, I will state that the alkalized water was bringing up some very frightening-looking material, including an alarming degree of phlegm (and I do mean "alarming") that was ejected from the lungs.  This discharge has not recurred, so let's hope whatever was in the lungs got out.

So now what?  The problem is that excessive alkalinity is ALSO caused by excessive vomiting, which creates a vicious cycle.  Thus, it's hard to tell what is really causing all of this vomiting.  Changing the water back to a normal pH is the only thing over which we had any control.  Hopefully, this will help, but we're not sure yet.

In the meantime, our hospice nurse is positively stumped (as am I!) regarding the vomiting.  His vital signs are normal, he is on an anti-nausea medication (Zofran, which isn't stopping the nausea), he is not bloated, his abdomen is not distended, he has good sounds on all four quarters of the abdominal cavity, he can pass gass, and his vomiting either comes with or without a nausea warning.  We have a gastroenterology consult appointment on Wednesday, May 6th with our regular hospital... and the hospice nurse heartily concurred that we need the appointment, largely because there is a possibility that tubes are blocked.  Since there is absolutely NO esophageal, stomach, or colon cancer, it would certainly be reasonable to assume that the problem lies in the center (where the liver, pancreas, and gall bladder come together).

Again, the diagnosis of biliary duct cancer was ultimately an educated guess on the part of the doctors, and was not genuinely confirmed beyond the shadow of a doubt.  This is why UCSF (not our regular hospital, but one where I have registered Tom as a new patient) was wondering why an esophageal retrograde cholangiopancreatogram hadn't been done as a confirmation for this diagnosis.  This particular test gives a direct image of the bile ducts, and the test was never done by our hospital.  If this test IS done, it could shed some light on why Tom cannot keep down water.  As for the doctors claiming that the test was "too invasive," there is a much less invasive test that tells the same information, which is called magnetic resonance cholangiopancreatography.  It's like an MRI specifically for the biliary duct.  I'll certainly be asking about this alternative on the day of the consult.  Meanwhile, I want Tom to have a good quality of life, even if they claim that he is terminal.  In the absence of all other intestinal issues, there is no reason for him to be vomiting all the time, if there is something that they can do to help him.  If this hospital won't do it, then we are off to UCSF.

So where are we in need of prayer?  Mostly, with regard to hope.  Please tell Tom not to give up hope, despite these complications.  Relatively speaking, he is in much better shape than a lot of people who have beaten cancer.  While this has been a very difficult month and a half, God has also shown us how incredibly giving and wonderful people can be.  Personally, I feel inspired by all of you... inspired to keep going, and inspired to be a better person.  Please help Tom feel your love and inspiration, and let him know that there is always hope!

Love,

The Canterberrys