Background Info

It's been said that I am not an open book. I can live with that. But don't be surprised that I now have a blog. The purpose is to give everyone a place to get the latest on Marye's condition. Also, this way I won't have to make numerous calls to all of Marye's fans to keep everyone updated (she has a lot of fans). Having said that, I'm more than happy to talk to her fans and give any additional information or answer questions to anyone. I just prefer to do that via private phone calls or emails, which is why I'm using this and not a Facebook group.

I'll start by giving the background of what's happened since July 30, 2011, then start with daily updates. Start at the bottom for the whole story.

I will try to update this page every day as often as possible with her treatment and status. As I get more familiar with the features, I'll add links and email features, etc. Thanks.

-Chris

Friday, January 27, 2012

Still Fighting

Ok, there has been a lot of activity in the past 72 hours, and it's not over yet.  But I'll try to get everyone caught up.  On Wednesday, they did the cholesystogram, and the initial report had the drain tube in the right spot.  This was backed up by the amount of horrid-looking bile that was draining into the bag.  She still had a lot of pain in her belly, but her gall bladder is still severely inflammed.  Over the past few days, the amount of fluid draining continuously fell, which totally made sense.

The other major symptom she had was the high white blood cell (WBC) count.  That has gone up and down daily.  They take a blood draw twice a day, and it went from 40, to 32, back up to 38, etc...  She has no fever, but that could be a result of the steroids, or her weakened immune system, or both.  Well, today, the doctor came and explained that they revised the initial to say that the drain was, in fact, not in the proper location in the gall bladder.  It definately started out right, but it can pull out very easily, especially if the swollen gall bladder retracts somewhat once it starts draining.  Also, she started coughing up some, today.  That makes sense, since she's been in bed since Sunday.  So she got another chest x-ray to make sure she doesn't have any pneumonia.

Moving forward, the plan is to get another CT scan to see if there are any other areas of abcess (infection) in the abdomen, then have the radiologist attempt to replace the drain tube in the gall bladder.  If that doesn't work, then they'll have to do it on Saturday in surgery.  Her symptoms pretty much make sense with what the theory is about the drain tube.  If it started to drain well, then her WBC count would certainly go down.  But if it later slipped, then the infection could have taken hold again, accounting for the WBC spikes.  She is on a very potent antibiotic, Zosin, which is probably helping to keep it at bay.  The longer-term plan is to get the infection under control, then wait a few weeks before they try to remove the gall bladder.  Waiting will allow the inflammation to go down and increase the chances that it can be done laproscopically.  But that's still a ways down the road.  For the time being, we're just trying to get this infection under control and get her comfortable.

I'll post more as I can.  I'll update again tonight with the result of the drain tube procedure and CT scan.

-Chris

Wednesday, January 25, 2012

The word of the day is...

dilaudid, aka hydromorphone. 

Tuesday started with the usual round of junior doctors waking us up at 6:00 am.  Of course, they can't offer anything useful, so they're just practicing.  Overall, it was a quiet day.  Marye has been enjoying the effects of the aforementioned pain medication.  Apparently, this stuff is several times stronger than morphine, and is considered the Egg McMuffin of pain meds.  Within five minutes of getting the shot, her eyes start to glaze over and she becomes less coherent, spouting nonsensical sentences to the nurses.  Eventually, she drifts off to sleep, awaking momentarily only to holler out some out-of-context non-sequiter.  Funny stuff.

In other news, her white blood cell (WBC) count, which had come down after the first few doses of antibiotics, actually shot up again.  As of Monday night and Tuesday morning, they were hovering around 39- way too high.  The doctor theorized that after the procedure to install the drain, the gall bladder might have become more inflammed, temporarily, prompting that reaction.  By Tuesday night, the WBC was slowly falling and stood at 35.  At least it's moving in the right direction.

The other good news was when Dr. Riley came in and sat with us for about an hour.  She explained that the lesions that were visible on the CT scan were likely abcesses, not cancer, and there is not much reason to worry about them now.  The latest tumor marker number was down to about 300, and there is no clinical indication that the cancer is growing.  Anyway, with the infection in her gall bladder, she can't take chemo- possibly for as long as two months.  It would be very dangerous to attack her immune system until the infection is taken care of.  Still, it's scary to stop the treatment, as the cancer could start to rebound.  If they decide to take out her gall bladder, they could then go in and biopsy the lesions.  Until then, she's just going to continue with the same chemo drug (taxol) when she restarts her therapy.

Also, on Wednesday, they plan on doing a cholesystogram, which is a scan of the gall bladder.  They'll inject a dye into the tube that's draining the infected bile, then look at the gall bladder under a flouroscope.  That will give them a good picture of what it looks like.  For the near-term, it looks like she'll be in the hospital until the infection gets under control.  Eventually, I anticipate that she'll go home with home infusion of antibiotics.  Again, they may or may not decide to take out the gall bladder.  She may also have the drain tube in place for some time.  There is still a pretty ugly looking bile/blood/pus mixture draining.  We don't have a lot of answers, as far as timeline goes.  It's just depends on how she responds to the antibiotics.

Overall, it was good to hear that the cancer doesn't seem to be playing a part (or growing), even though she is still pretty sick.  As long as she can fight this infection, I think she'll be ok.  Thanks to everyone for their concern.  She's a fighter.  I'll post again on Wednesday after I know something.

-Chris

Monday, January 23, 2012

As big as a grapefruit

So, after the eventful evening in the ER, Marye finally made it to radiological to get a CT scan.  It was pretty late, so we weren't expecting to hear anything until the morning.  However, we soon got the word that the scan showed Marye's gall bladder was as big as a grapefruit.  Also, there was a lot of fluid around the liver, which could be ascites- or, worse, a ruptured gall bladder.  Now things started to make sense: with the extremely elevated white blood cell count, the bloating in her abdomen, and the extreme pain, it was clear that she had a pretty good infection going on.  I debated with the resident surgeon on the best course of action.  A ruptured gall bladder is a medical emergency, but they weren't positive that's what it was.  By this time, it was 3:30 a.m., and they figured that they would get in touch with her GI doctor within a few minutes.  So I agreed.

She got into the Hematology/Oncology (HemOnc) ICU ward at around 5:30 a.m., and the circus with the residents and interns started promptly at 6:00 a.m.  I won't bore you with too much detail about the peanut gallery of interns that make the rounds with the attending physicians, except to say there were at least 22 doctors in her room before 8:00.  In any event, after talking to the oncologist and the GI doctor, everyone decided to leave the gall bladder in place for now, but to insert a tube to drain the bile/blood/pus from the gall bladder and relieve the pressure.  Also, with the heavy antibiotics she's been getting since Sunday night, her white blood cell count went from 34 to 23.  So, it appears that the infection is getting under control, and with the drain now in place, the rotten, infected bile is leaving her body.  That's the good news.

The bad news is, the CT scan indicates that there are some new lesions in her liver.  If that is what they are, then the taxol she's taking isn't working, anymore, and she'll need to change medication.  But that will be only after the gall bladder infection is clear.  Anyway, Dr. Riley (the real oncologist) came in and told Marye that the tech who reads the CT scan doesn't know what he's talking about and that there are no new lesions.  Only a tumor marker test will tell us for sure.  I'll keep you informed on that as we find out more.

As of 9:30 p.m. on Monday: Marye is pretty well doped up on dilaudid, a very effective pain medication, and numerous antibiotics.  I'm trying to find out the latest WBC count numbers, but she looks a lot better than she did last night.  Future plans: depending on how the infection reacts to the antibiotics, she might stay here for another day or two.  They may send her home with more antibiotics, and will eventually decide what to do with the gall bladder.  If it shrinks down to normal size, they could leave it in place, or remove it laparoscopically.  It doesn't appear that the gall bladder is ruptured.  Once we figure all this stuff out, we'll get back with Dr. Riley to address the possible lesions.  I'll keep updating until she gets stabilized at home.

-Chris

Sunday, January 22, 2012

Live. Late-breaking.

I realize it's been quite a while since I've last posted.  Attribute that to the holidays, and the fact that it's been pretty quiet on the Marye front.  When I left you last, Marye was scheduled for an MRI.  So, that happened and it was very good news.  The tumor has shrunk down to 1.3 cm and the tumor markers decreased to 335.  Everything is moving in the right direction.  She's had two treatments since the last blog update and the biggest complication is just the constant fatigue.

Today was different.  Marye had some abdominal pain starting this weekend.  She initially thought that it was gas.  I wasn't convinced, since she hasn't eaten anything that would cause that kind of gas.  Also, she took some Gas-X, and it didn't help, when it usually does.  Anyway, the pain got progressively worse, until she was in absolute agony.  Also, her temperature was down to 95 degrees and she had some serious cold sweats.  I planned on driving her to the ER, but she couldn't even get up to walk to the car.  So I called 911, and the ambulance came to transport her to U of L.  The paramedic had to lift her up and carry her outside.

As of 11:30 pm on Sunday night, she is resting in the ER.  They gave her some heavy pain medication, so she's pretty dopey.  She's also trying to down the quart of contrast they gave her so she can get a CT scan and see what's going on.

Breaking update: she just vomitted up all of the contrast, probably due to the pain meds she's been getting intravenously, so, no more contrast.  The plan is to get the CT scan, then she's going to be admitted for the night.  They're arguing amongst themselves on whether she should go to the oncology ward or ICU, but I think she's going to wind up in ICU.  Also, her white blood cells count was at an astoundingly high 34, indicating either and infection or something else just as serious.  As a reference, even after the Nuelasta, which stimulates white blood cell growth, her WBC count rarely goes above 12.  So, we don't know what's happening.  At the moment, she's pretty dopey from the pain meds.  Her pain has gone down some, so at least there's that.  I'll post more tomorrow when we know something.

-Chris

Sunday, December 18, 2011

MRI

Hey Folks,
There were some big developments last week, and I'm sorry I haven't posted lately, but it's been pretty busy here.  So, we went to Brown Cancer Center on Wednesday for Marye's scheduled chemo treatment, but we had to talk to the oncologist about the activities from the previous week.  Marye still had quite a bit of pain in her side, i.e. the oxycodone was not working.  Even though she was taking every four hours.  But, prior to her chemo, she took the usual steroids, and actually had some relief from the pain.

So after kicking it around with Dr. Riley, she decided to get an MRI of Marye's liver before she would give her a chemo treatment.  She doesn't know what is causing the pain, but the fact that the steroids relieved it led her to believe that it's some kind of inflammation.  Also, with the new lesions showing up on the last two CT scans, she wants to get a better handle on what the cancer is doing.  The plan is to see the MRI, then decide if it's time to change chemo drugs.

She also gave her a new pain medication that's not a narcotic, but a strong analgesic, and put her on a low-dose steroid.  Well, Marye is feeling much better due to all of this.  The steroids are giving her a good boost of energy, without the side-effects that steroids can cause, and the pain is there, but not too bad.  Anyway, she's much happier now, and actually drove her own car for the first time in 4 1/2 months.  They did the MRI on Friday, so we don't have the report yet, but we're scheduled to go back on Thursday to find out and get the chemo.  Again, the oncologist will make a decision on whether to change the chemotherapy when she sees the MRI report.

So, until then, it should be fairly quiet.  Hope everyone is having a nice holiday season, and you'll hear from me on Thursday or Friday of this week.

-Chris

Saturday, December 10, 2011

Undermedicated

Well, after two days in the hospital and several tests, the doctors couldn't find one thing wrong with Marye.  Aside from the cancer in her liver, they said she looks as healthy as anyone.  There is no infection, her gall bladder looked ok, the stent was in the right spot, etc.  But she still had a fair amount of pain in her side.

So, they figured the pain could be from the tumor doing something in the liver, or even just irritation from the ERCP.  Anyway, we started talking about pain management, and it came out that she really hasn't taken enough pain meds to give them a chance to work.  She's been taking an oxycodone every night and it hasn't really helped.  But according to the docs, you really need to take it more often so it stays on board and can build up in her system.  So that's what she's doing.  Taking an oxy about every four hours or so, and she seems to feel a little better already.  This will be the plan until Wednesday when she sees her oncologist and maybe we can get to the bottom of the pain issue.

It seems a little wasteful that she spent two nights in the hospital, but really, we're glad that she got checked out.  She has a high tolerance for pain in general, and this is a new development.  So, if she's complaining of pain, I take it seriously.  But everything looks ok and she is pretty healthy, considering.

I'll post again after her chemo treatment on Wednesday.

-Chris

Thursday, December 8, 2011

New trouble

So, there's some new stuff going on that we didn't anticipate.  After Marye's ERCP last week to replace the stent, she's had a pretty severe sharp pain in her side that she really couldn't explain.  She at first thought that it might have been some irritation from the procedure, but it didn't go away, and in fact, it continually got a little worse as time went by.  It was also much different than the pancreatitis she had after previous procedures, in that it didn't make her nauseas and it wasn't affected by her eating anything.

We called the doctor on Monday and they sent her to the hospital for some xrays and blood work, but nothing looked wrong.  There's no infection, the stent looks good, all the blood work is normal.  So yesterday, she got admitted to Norton's to try to figure it out.  There are only a few things that can cause pain in the abdomen like this, including pancreatitis and cholecystitis, an inflammation of the gall bladder, but again, the symptoms aren't matching.  Also, the tumor is continuing to shrink, so it doesn't seem to be anything to do with that.

She had an ultrasound today as well as a HIDA scan, which tracks the bile as it moves from the liver to the small intestine.  Apparently, it seems like the gall bladder may not be working properly, but we're still waiting for the doctor to give us his report and plan of action.  It seems like they're leaning towards removing the gall bladder, but we don't know, yet.  I'll post again when we find out what's going to happen.

This is a fast-breaking news story.  Check back often for updates.

-Chris