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

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

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

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

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

Improvement

I know it's been few days since I've posted, so file this under the category of "No news is good news".  Marye has been showing slow but steady improvement this week.  Her white blood cells are down into the normal range and she is feeling better.  She's still taking dilaulid for pain several times a day, but it hasn't been as bad as it's been.  Also, the dilaulid is not knocking her out as much as it was, while it still eases the pain.  They discontinued all of the IVs and she's taking antibiotics via pill.  Finally, she's been working with the occupational and physical therapy folks, and is able to get up out of bed on her own and can walk without a walker.

On the downside, she still has pneumonia.  There is a fair amount of fluid in her lungs and the plan is to tap her lungs tomorrow, using a needle through her back and into the lungs to drain the fluid off.  They can also run a culture of the fluid to see how infected it is.  Her only realy clinical symptom is her oxygen saturation.  She's currently on oxygen, her levels are good when she's laying down.  Today, though, as she walked around a little, they tested her O2 and it went way down.  Hopefully, draining the fluid from her lungs will help that.  So, it's possible that she will go home on Friday.  The last thing they need to do is to transition her to oral dilaudid for pain.  If she still needs the oxygen, she can get that at home, though it would be better if she didn't need it, obviously.  But it's looking much better, overall.  I'm not sure if they will get everything done in time to discharge her, but it's very possible.  I'll post again on Friday with the results of the procedure and the timeline for discharge.

I'd like to take this time to again thank everyone for their thoughts and well-wishes for Marye.  She's gotten a lot of cards, calls, visitors, etc. this week and they really lift her spirits.  So thanks to all of you.

-Chris