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, March 30, 2012

CT scan, ERCP, and Stents

Good morning, everyone.  It's been a busy week inside of Marye's belly.  When we last left you, we were waiting the results of the CT scan from last week and she has been suffering through pretty much constant nausea and pain caused by the aggravated gall bladder and gall bladder catheter.  Dr. Riley called me early this week to let us know that yes, the tumor has grown- but not by too much.  It went from 3.7 cm to around 4.1 cm across.  There is also a second, smaller tumor that is roughly 1.5-2.0 cm across.  That's not great news, but it's not unexpected since Marye has not been on chemotherapy in over two months and the tumor markers have gone up.  Since the cancer is growing, it needs to be addressed; but it is slow-moving, so we have some time to deal with her sick gall bladder before she goes back on chemo.

We started that process on Thursday with another ERCP by Dr. Vitale, Biliary tract doctor, extraordinaire.  First, we discussed getting the gall bladder removed to ease her discomfort and give her a better quality of life.  Dr. Vitale is not keen on removing it due to the fear of complications and the fact that it is not causing serious problems.  According to him, with the inflammation she had/has there, there will be adherences and other abnormalities that raise the risk of cutting her open.  He said it will look like "someone poured a bottle of glue all over the gall bladder" and surrounding area.  For this reason, it's not possible to do the cholesystectomy laparoscopically.  He's going to have to do open surgery, further increasing the risk.  Even with the best surgeon (himself), he estimates a 20% chance of complications, with a 30% chance that the procedure won't decrease her discomfort.  Remember, she still has a lot of other issues in her abdomen (cancer) that could be the source of the nausea/pain.

On to the procedure: he did the ERCP and allowed me to sit in the control room to observe it live on the monitors.  It helps to be educated about these procedures.  I felt like a groupie getting backstage at a rock concert.  Dr. Vitale's excellent Fellow, Dr. Barr sat with me and narrated during the procedure.  I can say it was truly fascinating.  Vitale is like a fighter pilot, navigating his way through her GI tract and sending down tools to remove and replace the stent.  Pics below!  The whole thing took about 20 minutes.  Dr. Barr says it would have taken him over an hour!

After the ERCP, I sat with Dr. Vitale again and talked again about removing her gall bladder.  Again, he said that he recommends against it "unless he really has to".  I explained to him that although it doesn't appear to be causing her any medical issues, she really is uncomfortable and we believe that taking the gall bladder will help that.  He conceded that it could be the cause of her nausea/pain and scheduled us for a consultation and follow-up surgery in two weeks.  He will do the procedure if she wants it, but he wants to schedule an entire afternoon for her to make sure he has enough time to go slow and do it right.  He also wants her to fully understand the risks involved.  The two weeks will also give her a little time to see if the new stent might ease her discomfort.  Dr. Vitale also removed the catheter from her gall bladder, so that will likely help, as well.  She might decide that she's feeling better enough to not need the surgery.  If that's the case, we'll go back to focusing on the cancer (chemotherapy).  In the meantime, the Aromatase Inhibitor should keep the tumor from growing too quickly and she can get on chemotherapy in another month or so.

On to the pics!  You can also check them out on my Picasa photo album.











Tuesday, March 13, 2012

One step back...

I think I've used that post title before.  Sorry.  Anyway, it's been a while since I posted, so I wanted to give everyone an update.  Since the last post, Marye has been feeling ok, relatively speaking.  She still suffers from fatigue and lethargy, but nothing concrete that she can put her finger on.  That's good in a way, since she's not really having a lot pain.  She had blood work done last week, and on Monday we found out that her tumor markers have increased to over 200.  The last number we had was 160, so it's definitely moving in the wrong direction.  This isn't exactly unexpected, since she hasn't had chemotherapy in about two months.  However, she has been on an Aromatase Inhibitor, which stops the producution of estrogen in the body, hopefully starving the tumor of what it needs to grow, but the AI usually takes 4-6 weeks to have any effect.  So the question is: do we go back on chemo or give the AI a chance to work?

We'll have an answer in the next week or so.  More important than the tumor marker is a CT scan, so we can see exactly what the tumor is doing.  We expect that to happen soon.  After that, Dr. Riley will consult with Dr. Vitale to decide if Marye is strong enough to go back on chemo.  Those conversations are forthcoming, so I expect the next week to fairly busy.  One thing about cancer, it never lets you forget who's boss.  Just when you get into a rhythm, it pokes you with a stick to get you moving in another direction.

So, that's it for now.  Marye is fairly comfortable, aside from the aforementioned fatigue.  She's eating well and her hair is actually growing back, much to her chagrin.  Of course, that won't last much longer.  I hope everyone is well, and you'll be hearing from me soon.

Sunday, February 19, 2012

Another long week

Unfortunately, no news is not good news this week.  Marye was quite busy with doctor's appointments all week.  She started with the pulmonologist and a chest x-ray.  There was some fluid in her lung, known as pleural effusion, but it wasn't enough to be worried about.  The doctor wants to see her in two months.  I'm afraid that's the extent of the good news.

Since she's been home from the hospital, Marye has been suffering from a good amount of pain from her abdomen.  We've been attributing that to her sick gall bladder, but it seemed to be getting worse.  She was scheduled to see Dr. Riley on Thursday, and the doctor wanted to get a CT scan to see what was going on in Marye's abdomen.  So, we did that.  The CT scan showed some abcesses in her abdomen that are probably infection.  They also took blood to check on the tumor markers to see what the cancer is doing since Marye hasn't had chemotherapy in five weeks (still waiting on the lab results).

Since Marye is scheduled to see Dr. Vitale on Tuesday about the gall bladder drain tube, Dr. Riley prescribed two fairly generic antibiotics to hold off any infection until next week.  She also gave her an anti-estrogen medication to try to keep the tumor at bay while Marye is off chemo.  Since Marye's cancer is estrogen-receptor positive (ER+), it feeds off estrogen.  Prescribing an aromatase inhibitor slows the body's production of estrogen to keep the tumor from growing too much.  We're also concerned with the amount of pain Marye is dealing with, so Dr. Riley gave her MS Contin (long-lasting morphine).  Unfortunately, the problem is that Marye is suffering from pretty bad nausea and vomitting for the past two days.  We've yet to figure out what's causing it, but we're suspecting the MS Contin, so she moved back to Dilaudid.  As of Saturday night, she hasn't left the bedroom since Thursday night, but she is awake and has periods where she feels ok.  I'm giving her a lot of Gatorade and trying to get her to eat as much as she can.  I'll update again on Sunday or Monday.

-Chris

Saturday, February 11, 2012

Hospice care

Since we got Marye home on Wednesday, she's been kind of up and down.  The oral pain medication isn't quite as effective as the IV stuff and she's very, very fatigued.  On Thursday, she was so tired and sleeping so hard that she was borderline non-responsive.  So, I was talking to her oncologist who suggested we call hospice in.  Before you get nervous about that, I found out that there is a big misconception about what hospice is for.  People think that hospice is brought in during the final days or weeks of someone's life- and while they do provide that service, it's much more.  Hospice is about quality of life care, and they will send a nurse in once a week and a nurse tech in three times a week to evaluate and help Marye (and me) getting cleaned up and comfortable.  They manage her medications and (this is the big thing) act as the eyes and ears for the doctor.  So when she does have a bad day (like Thursday), the nurse can evaluate her and give the doctor a good assessment.

In the meantime, when Marye gets strong enough to start chemotherapy again, hospice will stop.  So, it's a good resource and just another tool to have in the bag.  The oncologist said that statistically, people live longer when they have hospice because they are getting better care.  So we'll run with this for a while.

Anyway, as I said, Marye is having ups and downs.  She perks up for a few hours every day and I'm trying to manage her pain.  She's also taking ritalin to give her a boost of energy.  She is off the steroids since they actually weaken the immune system and we're still watching her for signs of infection.  Overall, she's much more stable and comfortable now.

The hospice nurse will be here on Monday morning and we'll get her started.  I'm looking forward to Marye getting some professional care at home to supplement what I'm doing for her.  I'll post again on Monday to talk about how it goes.  Have a good weekend.

-Chris

Thursday, February 9, 2012

Seventeen Days

Marye came home on Wednesday, 17 days after first going to the hospital.  Since the last post, there was a bit of a downturn.  Over the weekend, she was walking around, eating well, etc...  On Monday morning, she again began to feel pretty lousy, mostly in her chest.  She had a chest x-ray; that and the PE CT scan both showed more fluid in her lungs that no one could really explain.

They wanted to insert a chest tube (pleuracath) into her lung to let it drain naturally.  They did that on Tuesday, and it did drain a lot of fluid.  By Tuesday night, she was feeling a little better (although not as good as she was over the weekend), and we planned on taking her home on Wednesday.

So, here we are.  It's been 17 days since she's been home, so we need to get her back into a comfortable groove.  She's not as strong as she was before she went to the hospital.  I hope that changes, but it will take some time.  I'll post again in a day or two, with an update on her condition. 

As always, I want to thank everyone for their kind thoughts for Marye.  She appreciates it, as well, but is unable to respond to everyone's well-wishes at this time.

-Chris

Monday, February 6, 2012

Quiet weekend

As I hoped, there were no catastrophes this weekend.  Marye was resting pretty well and her pain situation is slowly getting better.  She has pain from the cholecystitis (gall bladder attack) and from the thoracentesis (needle in the lung).  They're managing it well with the dilaudid, but it is still there.  That said, she's been able to get up and walk around the hospital floor every day and she's eating well.  Her WBC count is good, so we're looking forward to her getting discharged soon.  They need to transition her to an oral pain med (dilaudid) and she might need home oxygen, but there is no reason for her to be in the hospital anymore.

As of tonight (Sunday), she's been there two weeks, and she hasn't been pushing to go home like she usually does.  So I know that she was pretty sick, and still isn't 100%.  But there are no acute problems that can't be managed at home, and it's so much more comfortable on her own couch.

Monday is a new day, and I'll post an update when we get a timeline for her discharge, as well as her condition.  I have a feeling, though, that she'll have some pain for quite some time.  That gall bladder is a nasty booger.

-Chris

Friday, February 3, 2012

A lot of dollars

It was a busy day today.  The plan was for Marye to have a procedure called a thoracentesis, which is using a needle through the back into the lung to draw off any fluid from the pneumonia.  So while we were waiting for that, she had the usual gaggle of doctors and technicians coming in to the room every few minutes.  Another procedure she had was an ultrasound of her heart.  We should get the results of that tomorrow.  In the meantime, her breathing has not really improved at all.  She was able to take a walk around the floor today, so that was pretty good.  But she needs to get back on the oxygen right away.

Anyway, they did perform the thoracentesis and were able to draw off about a liter and a half of fluid from her right lung.  They will do a biopsy on the fluid to see if there's any cancer, but they don't expect to find that.  There will also be a full culture done to check on the pneumonia.  As I write this, her breathing has not improved yet, but it should as her lung should now be able to fully expand.

She was no longer taking any IVs, and the pain is being managed well with the Dilaudid.  I'm not sure yet when she will be able to come home.  I doubt it will be this weekend, but hopefully by Monday she'll be strong enough.  I'll post again over the weekend with any updates.  I'm hoping that it is a quiet weekend.  I'm telling you, if I had a dollar for every time someone came into the hospital room throughout the day, I'd have a lot of dollars.

-Chris