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

Monday, January 30, 2012

Between a rock and a hard place

Since Saturday things have been fairly stable with Marye and her various conditions.  You may remember that the plan was to observe her until Monday to decide whether to take out her gall bladder.  What they're looking for is how she responds clinically to the antibiotics for the infected gall bladder as well as the pneumonia.  There was a bit of excitement around 3:00 am Sunday morning as her heart started to display a slightly irregular heart beat.  She was never in any real danger, although I admit that my heart rate went up as they paged "stat response" and four nurses appeared in about six seconds with the fibrilator machine.  Anyway, it turns out that her magnesium was low, and magnesium regulates heart rhythm.  Who knew?  The doctors and nurses do, apparently.  I won't dwell on this episode since it was over as soon as they gave her a magnesium supplement infusion; but I learned more about the heart in that hour than I ever even knew existed.  I think it was former SECDEF Donald Rumsfeld who made a comment about how we "don't know what we don't know."  I also would like to take this time to point out that the nurses on this floor are incredibly competent and caring.  I'm thankful that there are people in this world who are so caring and dedicate their lives to the well-being of others.  I know this is their job and they are getting paid, but they obviously do this for reasons other than money.

Back to our story...  We heard conflicting reports through the weekend on whether they were going to do a procedure to either reposition the drain in her gall bladder or just remove the whole thing.  However, today we were completely underwhelmed with the amount of activity from the various doctors.  But Dr. Riley came in a few times and put everything together for us.  The plan was for the radiology team to fix the drain tube.  But they have been looking at the scans and the gall bladder appears to be completely deflated at this point.  So it is both impossible and futile to try to get the drain tube back in there.  Dr. Riley thinks they should just remove the tube, since it's not draining anything at this point.  Also, they cannot rule out that the gall bladder is ruptured.  My question was, if it's a possibility, then why are they not going in to find out.  Dr. Riley explained that there really is no point, since the risk of open surgery is fairly high, given Marye's condition.  So, even if they were to see a rupture, they would not want to open her up as long as she is improving clinically, which she is.  Also, it's not at all certain that they could even see the gall bladder without open surgery, since there is a lot of scar tissue and fluid around it.  So, without being forced to open her up due to acute complications, it's safer to leave it be.  Again, Marye is showing slow improvement, so we're just going to stay the course.

And that's the plan... stay the course.  She is on antibiotics for the pneumonia and the infected(?) gall bladder.  Of course, the problem is that with the chemo and cancer, she is weaker than most people, so whether to do surgery is a matter of risk management.  Unless they absolutely have to, they will hesitate to cut her open; but that makes her recovery slower than it might otherwise be.  We're kind of between a rock and a hard place.

-Chris

Saturday, January 28, 2012

Fractals

fractal is a geometric shape or pattern in nature that is made up of smaller parts that exhibit the same pattern.  For instance, a tree is made up of branches, each of which looks like a small tree.  Or a snowflake is often made up of smaller geometric shapes that, in turn, look like snowflakes.  Well, this past few months has been a fractal, as well.  I said yesterday that it felt like I was on a roller-coaster.  The day started off well, then went downhill as they discovered the pneumonia and the doctors scrambled to develop a plan.  Throw in a little miscommunication late in the evening, and you can see my point.  But if that one day was a roller-coaster, it was also part of the larger roller-coaster that was the entire week.  And that week was part of the even larger roller-coaster that has been the past six months.  See where I'm going with this?

Anyway, in typical roller-coaster fashion, today is looking much better.  After I had a chance to sleep on yesterday's events, I cooled off a bit and recognized that the miscommunication was not a huge, systemic problem, but rather what I like to call an "opportunity for improvement."  I decided that there was no way that any surgery (or any other procedure, for that matter) was going to take place until I talked to the attending physician.  They must have read my mind, because Dr. Vitale and Dr. Smith both came in this morning to talk to Marye and me.  Well, just me, really, since Marye had just had a shot of dilaudid, so she was pretty well out of it.

But the good news is that they don't want to operate just yet.  She is stable, and although her WBC count is still high, the other numbers regarding the various types of WBCs are looking better.  They would rather not operate until the pneumonia is under control, so they're going to just watch her and reevaluate on Monday.  If she does not improve (or gets worse), then they will likely go ahead and take her gall bladder.  If she does show improvement, they might decide to leave the gall bladder in place with the drain so she can get back on chemotherapy sooner.  The drain can stay in indefinitely, although they are not confident that it is exactly the right spot.  So they may decide to try to reposition it.  Again, though, she's in a holding pattern until at least Monday.  She is in the Oncology ICU, so if there are any rapid changes for the worse, the staff here is qualified to handle it.

For now, things are quiet.  She's resting well, and I'm calming down.  I'll post a quick update tomorrow, but we shouldn't have too much activity until next week.  Have a great weekend.

-Chris

She's got some gall (bladder)

What a roller-coaster on Friday, and Saturday doesn't look to be much better.  First, the chest x-ray showed that Marye does, in fact, have a slight case of pneumonia.  So they added several new antibiotics that can fight respiratory infection.  Then they did a CT scan on her abdomen to get an idea of what is going on with the gall bladder.  At first, the doctors told me that it looked like there was no fluid in it and it was almost down to its normal size.  Later, though, I read the report and it said that the drain tube did appear to be outside of the gall bladder and that the whole thing was still distended.

Then they started making preps to have surgery on Saturday to either remove the gall bladder or maybe just try to fix the drain tube.  We also theorized that they were just reserving the OR in case they wanted to do surgery.  Who is "they", you ask?  I don't know.  At this point, everyone was deferring to Dr. Vitale (at Norton) who was in surgery all day.  I also hear a lot about "the surgeons", as if they're some mythical group of super-docs who never show up until the very moment that they're needed to save the day.  Sounds a lot like Coast Guard aviators.  Anyway, we heard that Dr. Vitale was going to show up and give his blessing (or not) to remove her gall bladder.  But by 8:00 pm, he still hadn't.  However, one of the (junior) surgery residents did show up and informed us that they definitely planned on doing laparoscopic surgery in the morning.  When I asked him who ordered it, he told me the Chief resident did with the blessing of the attending physician, who is a partner of Dr. Vitale's.  Ok, then.  Sign the paperwork for Doogie Howser and he's gone.

Not five minutes later, Dr. Vitale, himself, walks into the room (it's 9:00 pm by now) and asks, "what's the latest?"  So I told him about Doogie and that they're planning on operating in the morning, to which he says "I don't think that's right."  One phone call to his partner later, and he confirms that they only reserved the OR in case they want to operate.  There are still a lot of reasons NOT to operate at this point, including (but not limited to): the gall bladder is still very infected; she has pneumonia; her WBC count is still very high; her immune system is weakened due to the cancer and chemotherapy.  Dr. Vitale tells me there are two types of infection: abscess, which you can see on the CT scan; and infected tissue, which you can't.  The only way to ensure that they will get the entire gall bladder and any surrounding infection is probably to open her up, and he doesn't think that that's the right thing to do, yet.  So, they may go in and try to re-position the drain tube to get more abscess juice out, or maybe not.  At this point, I don't think anyone knows what the plan is.

All I know is, I'm not going to listen to any more residents about what is going on with Marye's health.  For now, she's sleeping with the help of her new friend, dilaudin.  I'll have more info tomorrow.

Thanks for listening.

-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