Thursday, 6pm

Hi Friends,
Well, Anne hasn't felt well today.  She's had alot of nausea.  We discussed this with Dr. Ebrahim when he came around 2pm, and he's thinking it may be the Augmentin, an anti-biotic that he ordered yesterday to help fight the UTI and bladder infections Anne had going on.  It is known for causing nausea, so we hope he was right.  He has discontinued that drug from Anne's list.

Unfortunately, he was planning to send Anne home tomorrow, and how he has changed his mind.  I don't know if she could go home on Saturday or Sunday or not.  Anne can ask him in the morning.  He gets here so early I am usually not here yet.

Other than that, Anne is good, she continues to walk and exercise.  She said the stairs really sent her for a loop yesterday, but she needs to work thru that.  Anne is having her share of pain during the day still, and she's using a mixture of medicines.  Hopefully we can make some sense out of all of this after she gets home.  Just getting home may make her feel alot better.  Let's hope so. 

Wednesday, 5pm

Hi Friends,
Well, the blood test results are in and we've learned that Anne has a bladder infection as well as a UTI.  These are bein treated and Dr. Ebrahim is not overly concerned about them.

He is coming back tomorrow in the afternoon, and in the meantime he's thinking about Anne's next move and the timing of it.  I'm thinking she will be going home on Friday.  I could be wrong.  I asked Anne if she is concerned about coming home, and she responded with a question to me, whether I am concerned about taking care of her at home.  I said 'No'.

Anne and I had veggie burgers for lunch today with all the fixings.  She finished her burger, and tried to squeeze in some (guess what?) hummus.  Well, either the veggie burger, or the extra hummus made her miserably sick for this afternoon.  She had taken Dillotted before eating but it didn't do the trick this time.  The eating mystery continues.  We'll simply have to write down everything that goes into her mouth once we get home and try to find a pattern in there in terms of what's good and what's bad.  Sometimes I feel that one extra bite might put her over the limit, like trying to follow the veggie burger with hummus today.  Hopefully we can figure this mystery out over time.  As you've heard me say over and over, I wish the Lord had taken some of her appetite when he took her esophagus.

Anne took a short walk today with no walker.  Impressive.  Then late this afternoon Anne and Corina from PT went to test the stairway for the first time.  Anne climbed and descended 4 stairs and was pretty tired and dizzy from it.  This will get better with practice.  Anne is sleeping in the recliner next to me now as I write this.

Anne (and I) haved received tons of cards from all of you, all of our friends, old and new, and we wants to let you know how much we appreciate those.  They have each one been a blessing to her spirits.  Thank you everybody!!

There's not a heck of alot going on in here these last couple of days, it's almost getting boring, no IV's, no electronics (knock on wood!), and there seems to be no hurry for anyone to kick Anne out of here.  It's good, that's what Anne needs.  She's pretty much still in slow motion as of late, and that's not a bad thing, but she is getting more and more back to normal and 'with it' all the time.  Today she mentioned being challenged with her spelling.  I think she is happy that no one is chasing her out of here this time.  Lord know a mistake was made last month on that note.

Aside from all of that, I myself had an awful night of sleep last night.  It felt like I was awake all night, but it may have been just a flash in time.  I'll never know.  Anyway, I was dreaming that I was blogging from the SuperBowl Game.  I was having a terrible time, struggling to convey what was going on in the game in writing, and I couldn't figure out how to make sense of it.  I continued to wake up, telling myself to "STOP", that it didn't make any sense what I was doing, that the game was not being played yet, rather next Sunday.  But, I'd go back to sleep, toss and turn, and struggle to try and write a conversational blog about the game again and again.  It was terrible.  I know what you're asking, and 'No', I don't know who won yet.   

Tuesday, 5pm

Hi all readers,
Not sure I'd menioned that on Saturday Anne had a low grade fever for awhile.  It went away with some Tylenol.

On Sunday she had a good quiet day, sleeping alot, and she walked one lap around the 400 foot block, late afternoon, without stopping.  I don't remember much else happening on Sunday, maybe it will come to me as I write.

On Monday another low grade fever was detected and it got the doctors attention.  Around 7pm we learned that Dr. Ebrahim had ordered a chest xray, and blood work. 

Anne also learned that there is concern for 2 blood clots.  One is near the pelvic area, and the other in the chest.  It seems that these are expected, maybe routine whenever someone spends alot of time in the hospital and it not up and around much.  These are treated with blood thinners, but doctors do not spend alot of time tracking or studying them to see if they are dissolving.  It's seems like they are common, treated casually.  They can be dangerous though if they make it to the lungs, especially if they are large.  Remember David Bloom from NBC news.  Anyway, Anne is being treated for these. 

Last night Anne and I enjoyed hamburgers from Room Service.  Anne ordered us each one, with cheese, and loaded with all the condiments you can imagine.  I cut Anne's burger in half and I got upset when she went for the second half.  She was enjoying it so much I was certain she'd soon be in severe pain, calling for meds, and that I'd be here late all worried about her.  Well, the burgers were fantastic, and big, she was still raving about it today, and, she never became sick after eating the whole thing.  I'd have bet money otherwise.

At around 8pm we headed down to have the chest xray done.  I stayed with her because I don't like her having to go down to the basement alone where the xray dept is.  It's kinda the older part of the hospital.  They kind of drop you in a parking area to wait, then they call your number and you go in, then they park you again until the transport person comes to take you back to your room.  Anyway, it went quickly.  We were back in the room by 9pm.  Our concern was that the xray might reveal something serious causing the low grade temps, such as pneumonia or something like that.

Today we learned the good news that there is no pneumonia to be found.  A urine test did conclude that Anne has another UTI.  Perhaps caused by the catheter being used for so many days?  Anyway, all good news.  The UTI can easily be treated. 

Blood tests results from last nights draw were not available today.  So, we hope those tests do not show any other infections beyond the UTI.  Dr. E. warned that the pic line is a possibility, and so are the 2 small incisions from the stent procedure.  We hope for all good news coming out of the blood work.

Today Anne ordered a chicken sandwich for lunch, which looked as good as the burgers did last night.  She loaded it with condiments and enjoyed again, and without sickness afterwards.  I am amazed or should I say I give up trying to figure out this girl.   

She took 3 walks around the 400 foot block today.  Everyone is happy about how she's doing. 

Today Dr. E. called the fever and UTI minor setbacks.  He seems in no hurry to send Anne home.  He has reduced her Lasix dose to one pill daily, down from 2.  She has lost 47 pounds of fluid weight and he said he'd like to see her loose 10 more.

Our prayers are being answered. 

Sorry I left you hanging yesterday.  It was a long day with activities will into the evening keeping us busy.  And thanks for returning today to keep up with Anne's progress.      

No Visitors Sunday Please

Hi Friends,
Anne has had a good weekend.  Her catheter was removed yesterday, and after 2 tries she remembered how to pee at the toilet.  Now she's running back and forth to the bathroom frequently as the body fluid continues to vacate her body.  Anne has lost around 43 of the 54 extra pounds so far, and she's getting around much better.  There was one pound gained yesterday, and 6.8 lbs lost today.  She is now only 11 lbs over her original weight dating back to  November.

The on-call doctor today, Dr. Hedlund (the one who kindly admitted us to Gibson on Christmas eve based on our phone call) recommended strictly rest for Anne today, Sunday.  Same as what Dr. Ebrahim recommended on Friday for Anne for this weekend.

Yesterday Anne got up and walked around the block here, around the Gibson Pavillion block that is, it's about 400 feet.  She continues to have some pain after eating, and after excercise, but it seems manageable using pain meds she has available to her.

There has been concern at times for an occasional low BP.

Anne would like to thank all of you for your cards and expressions of love and concern.  You're prayers help so much, just knowing you are there.

If Anne can continue to get stronger, and to loose the excess water weight, then she may come home before long.  We'll have to see.  She is having some really good times now, looking good and feeling alert, that mixed with many periods of belly pain, much to be expected.

We hope you are all having a good weekend, enjoying the bright sun and warm temps. 

Feeling and doing better, Fri, 3:44pm

Anne has done very well since surviving yesterdays 'stent event'.  It was certainly draining (no pun intended).

There's a noticable difference in how she feels.  Alot of it could be relief, as she was definately 'freaking out' in the morning as she waited for the procedure to begin.  She was told she'd be 2nd of the day, happening in late morning.  It ended up starting at 2pm and ending at 5pm, so it was a long and tedious wait.  She's more 'herself' ever since sitting up last night once the sedation started to wear off.

Today Dr. Ebrahim told us he was pleased with the reports he'd gotten back from Interventional Radiology.  He said they radiologist was challenged, but he emphasized how well the job was done, just as good as it could have. 

For this weekend he's prescribing nothing but rest and relaxation for Anne. He's now changed her diuretic med from IV Lasix to pill form. 

Sounds kinda boring, but for me it doesn't matter.  It doesn't take much to entertain me while I'm here.  I'm fascinated just watching the urine drip into the catheter bag, as long as she's smiling, and she is smiling more and more. 

I told Dr. Ebrahim how I was just amazed how on Wednesday he had called for the CT Scan and uncovered the problem with the IVC vein, and on Thursday the problem was successfully repaired and fluid was running from Anne's body.  Some of the things they do here just blow my mind. 

I'm so happy for Anne that she has that procedure behind her.  We were given all the necessary information ahead of time as far as what needed to be done, and what to expect, and in a very relaxed fashion.  With that we  were given a chance to ask all of our questions, but Anne was groggy tired and was never really sure what it was all about.   It was all very frightening to me too, just to think that Anne was facing yet another procedure. 

Dr. Ebrahim had said to us yesterday morning that the stent would be our 'last option' in terms of helping Anne offload the excessive body fluid that was keeping her down.  He didn't know of anything further that could be done.  Thinking about that, that was a very scary thing to hear.  Anne said to me this morning that if the procedure had failed, that her entire thought process would have shifted to things like palliative care and hospice.  Can you imagine what she went thru yesterday?  She was so courageous.  

This morning when I got in she was relaxing in the recliner.  She had a heat pad on her right front shoulder where the upper incision happened yesterday.  There was some pain there.  She had already had breakfast.  Then she asked for help with a shower, then she combed her hair out.  She ordered and ate lunch, and now she's resting in bed.  It's around 4pm. 

There shouldn't be too much news to blog about over this weekend.  All in all we're just relieved, happy, and pleased to think that Anne will be mobilizing soon, wanting to walk about and get stronger. 

We again thank you all for your continued support, prayers and good wishes.  Thank you for being there.  Know that Anne is feeling better, and relieved, not ready to give up.

Stent procedure a success, Thursday 7pm

Hi all friends and readers,
Today was a long, tumultuous, stressful day.  Important decisions were made by Anne, and this afternoon she went thru yet another procedure.  She came thru it as you'd expect, like a trooper, with flying colors.  

Anne was finally taken for the procedure at 2:00pm.  She was taken to the procedure room down in interventional radiology. She came out of it around 5pm.  At the moment, 7:15pm, she's still very drowsy.  The procedure of installing 2 stents near the liver and heart, to create a channel for the Inferior Vena Cava was a success.

She's just now taking her first drink of the day, first water, then she asked for her mango-pineapple smoothy which was on standby in the freezer.  We're just listening to some TV and waiting to see if she becomes interested in the turkey dinner that's been delivered for her.  The pumpkin pie looks good, and she has a serving of humus too.

The doctors had said they would go in thru the groin to install the stent, but they went in from a spot near the clavicle as well, and they installed not one but 2 stents.  The doctor came to see us after he was done and reported that it came out just as good as it possibly could have.  He was pleased.  He said on entry, they discovered that the IVC was completely ecluded (sp?), or closed.  Now it is freed up and fully operational. 

Since Anne has been back in the room here we've been pretty amazed in watching the generous flow of urine thru the catheter.  The IV lasix will not be given tonight.  I'm sure Dr. Ebrahim is hoping that maybe Anne's body will be able to process and expell the fluid on it's own.  In terms of the bodily fluid problem, the future is bright.

Yesterday as Anne pondered the stent procedure she was saying 'why not'.  Today, this morning fairly early, the doctors showed up to talk with and console Anne, and to get her decision.  She was much more unsure and anxious about it today than yesterday.  I can't blame her.  She was especially brave to make the 'go' decision, and I'm very proud of her considering what she's gone thru today. 

She asked for pain meds around 7:15pm, saying the pain was not the usual belly pain, rather that it felt as though it was a different pain from the procedure.  The nurse brought her some Dilloted and she is comfortable with that now.

It's time for me to shove off for the night.  I'm grateful for all of your prayers and concerns.

Weds, 7pm, CT scan results

I arrived early today, early enough to be here with Anne when Dr. Ebrahim came.  Laurie was here too.

Anne said she had a good night sleeping, and she was continuing to have a good morning.  Very sociable and alert. 

Dr. Ebrahim came with the news from the CT Scan.  He told us Anne's cancer spots, one on her liver, and one near her windpipe, were maybe twice as big as they were last October when they were discovered.

He told us what else he learned from the CT scan.  He understood why the diuretics were no longer as effective at removing the fluid to the extent that he had hoped.  He said the tumor in the liver is putting pressure on the IVC (inferior vena cava).  That is the largest vein we have which brings fluids to the heart from the lower half of our body.  With that pressure, the fluid cannot get to the heart, therefore cannot get to the kidneys, therefore cannot leave the body.

He talked about the possibility of having a stent placed in there to open the channel.  If it can be done, Anne could get down to her normal weight before she goes home.  She would also be more comfortable, and more mobile on her feet once home.  He was going to have a talk with the people here that do this, in interventional radiology.  He would study the CT Scan with them and ask for their opinion on the possible benefits, risks, etc..

Later, Dr. Chris Anderson, an interventional radiologist, came here to visit us and he spent time talking about the stent procedure.  He was very informative and helpful, and he answered all of our questions.  It is a non-invasive procedure, where they go in from the groin.  They can do a pre- exam and go in and look into the area before actually doing the procedure.  They can make a fairly good determination of their chances for success.  He says they do these every day, and as outpatient procedures.  There is very little of a recovery time involved.  All of this is going to be up to Anne and how she feels about having another procedure.  She has had a very good last 36 hours.  We'll see.

He did state that the recurring esophageal cancer is pretty agressive, and it will grow without treatment, and possibly cause other problems along the way.  At this point we don't know whether Anne will opt for any further cancer treatment.  I'm thinking not, but she never ceases to amaze you know.  So, the cancer could grow and over come the stent in the future.  No one knows.

Anne and I will sleep on it, pray about it, and make a decision tomorrow when Dr. Ebrahim comes back to see us.  It's alot for her to think about.  I have spent time explaining all of this to her when she has been alert.  We agree that we should sleep on it and pray. 

This could be done tomorrow if Anne opts for it.  After that a few more days of fluid removal with diuretics, and then she'd come home as long as any extensive Physical Therapy are not needed.  Anne would only go to one place for PT, and that would be the Brighton Campus of MMC.  That's where she went after her brain surgery, and more recently where she went to volunteer with Dixie, her therapy dog, on Friday mornings during the summer.  They know and love here there.

Please pray with us tonight.  Pray that we are guided to make the right decision, and do the right thing for Anne.

Tuesday, 7pm

What do ya know, a down and up day. 

When I got in, early today, Anne was miserable after being treated for constipation the last half of the night, including a suppository, very painful according to Anne, which she said brought her to tears.  That battle lasted well into this morning before it ended, and it included another painful suppository.

I missed Dr. Ebrahim on his rounds to Anne's room before 9, but then I was able to make eye contact with him in the hallway and he said, "I'll come see ya."  So, I sat tight till he came by.  I hadn't seen him since around last Thursday, so he knew I'd wanted to see him, and Anne told him I was trying to get in early for that reason.

He came back around 10:30.  He stated that Anne would be here for at least another week because of the fluid weight.  I've been keeping a chart of Anne's weight loss and we looked at that, and it showed she hadn't lost any weight for the past 2 days.  He knew that, and he stated that since Anne, and her kidneys, are tolerating the Lasix just fine, that he planned to increase the dose starting tonight.

Not only that, but since it's been a while since Anne's last CatScan, he ordered one for this morning, and Anne completed that between 11 and noon.  Before that she had to drink a quart of 'red stuff' in prep for the CT scan.  That was WORK to get that down.  She had a bunch of pain so that when the ride came for the CT Scan they put in for a 15 minute delay.  With all of that, it was a lousy morning, and she went down stairs not feeling very well for the scan.  Afterwards she asked for pain meds, and they came thru with IV Dilotted.  She had a good nap after that, and I ran to do a couple errands. 

I brought in a basic bare bones (2 inch thick) sandwich from Full Belly Deli and we shared that for lunch.  Yum.  She didn't even come close to eating half.  Moderation is the key.  Lean cold corned beef on marble rye with yellow mustard.    She tolerated it nicely. 

This afternoon she came to life and had a great afternoon.  She walked some, even out of the room.  We took several wheel chair rides which involves a small amount of getting up and about.  She had a good time seeing everyone around the hallways again. 

Then she had a good PT session even tho she didn't want to.  Corina did a good 'sell job' on her.  Good thing.  Gotta move. 

It's after 7pm now and Anne's still comfortable, watching TV and dozing after having some of tonights special, roast pork loin, gravy, mashed and green peas.  I was afraid she was going to really enjoy it (if you know what I mean), but she ate in moderation and it paid off.  No belly pain tonight, knock on wood. ! ! !

It's wonderful that she's suddenly wanting to move out of the bed and recliner more and more, to get up and move.  The narcotics coupled with a lack of movment is a recipe for disaster in terms of constipation issues.  She knows that.  She seems to just be feeling better today, and stronger too.  A pleasant surprise after a very tough morning.

I've gotta tell you, we both know we're going to learn something from the CT Scan, and it's worrysome.  Please pray for good news coming from that test tomorrow.  Last time a shadow was seen, last Fall, and we all know what that meant.  So keep Anne in your prayers.  Thank you everybody.     

The Long Weekend, 7pm Monday

Hi all friends and readers,

At the moment Anne is relaxed and watching afternoon TV.  She had a few lousy days this weekend, Fri, Sat, Sun, just not feeling well.  Not hardly any smiles at all.  It was a very long weekend and I noticed that I didn't update the blog all during that time.  Sorry for that, but well, there wasn't much good to say. 


Dr. Duggan was on call here this weekend, and when they couldn't help Anne get rid of the nausea on Saturday he introduced a new drug, at least new for Anne, Decadron (dexamethasone). I'm wondering if this had anything to do with the lousy weekend?  Just making a note of it here.
Anne continued to lose fluid weight, almost every day, to the tune of 27 pounds total so far.  There was a day she lost nothing, and another day she gained a pound.  Last Tuesday we determined that she'd been carrying 54 pounds of fluid weight.  With that, I guess she is halfway home. 


The IV lasix is still being used, and actually is being increased this evening.  It is given morning and night.  The nurse was wrong last Friday when she said she thought they'd change back over to Lasix pills and be sending Anne home in the next couple days.  Anne says that Dr. Ebrahim said today that she could be here another 10 days.  I hope to catch the Dr. visit tomorrow, but it's tough to be here daily, well into the evenings with Anne, and then get in here early enough to catch the Dr. when he's in here early.  Besides, there's no schedule, so I need to be lucky too.  We never know when the Dr. might pop in.

Anne went thru a sad period this morning, what with all the belly pain and nausea she experienced all weekend long.  It got to her and she became pretty discouraged.  She was having some tough thoughts and I was so glad it came out while I was here with her.  We cried.  She's pretty tired of all the drugs and care needed, and when the belly pain sticks around too long well she gets worried and scared. 

This afternoon though, when she became eligible for 2 more oxycodone pain pills around 2pm, her smile came back, her eyes opened wide again, and her face relaxed.  I hadn't seen that relaxed look since last week.  It was a relief.  So we hopped into the wheelchair for the second time since yesterday, and we took a spin around the place.  She saw tons of people around the hallway who she was glad to see, and she socialized as we walked.  So many people have such nice things to say about Anne, they just love her around here.  They are like me in that when Anne is down, they are down, and when Anne is up, they are up.  There's alot of love between Anne and her caregivers.

I'm asking you all to pray for Anne's well being, that she has more good times than bad going forward, that she makes good choices at meal time and can tolerate those meals, and that we can find the perfect mix of meds to make Anne as comfortable, alert, and pain free as we can, more often than not.

Weds_Thurs

Sorry friends, I guess I dogged the blog yesterday and left you hangin.  That's because not much happened on Wednesday, EXCEPT WE LEARNED THAT OVERNIGHT TUESDAY 8 POUNDS OF FLUID HAD BEEN REMOVED FROM ANNE'S  BODY.  That's more than 3 litres!!  There are 2.2 pounds of water per litre.

As soon as the IV Lasix was administered the fluid began running thru the tube and into the bag.  It works that way for about 6 hours following the injection.  Then it slows down.

Last night it happened again, alot of fluid was removed.  Anne is doing well with it.  She's eating and she's more alert. 

Anne had a great morning today, Thursday, then she ate about 1/2 of her chefs salad, and she had belly pain.  She did not ask for pain meds, rather she gutted it out, fell asleep, and now she's watching TV.  She's not interested in getting up right now.

Before the pain came,she turned to me and said, "I need to walk".  I was pretty psyched, but she hasn't walked just yet.  Now that she's awake maybe the urge will come back.  I get her up and around as much as she will allow.  I know she's encouraged today.  The PT person who came before lunch did a good job, moving Anne around the room etc, and she was  motivating to Anne.

Dr. Ebrahim came in at 2pm and said he was pleased with Anne's blood counts, that the protein in her blood is better and better.  That's important because, with that, the body is able to pull the fluid from the tissues to the veins, then the kidneys can move the fluid out from there, especially with  help from the Lasix.  He want's to continue this regiment, or some form of this regiment (maybe he'll switch back over to Lasix pills now that the blood protein count is up?) thru this weekend.  He was not alarmed with getting 3 litres at a whack the first 2 nights using the injectible Lasix.  The nurse thinks they'll inject the Lasix one more time, tonight, then move to the pills for the weekend. 

I don't see where Anne is being adversely affected by this big loss of fluid so far.  She seems better and better with it.  She had a good overnight last night and a great morning today.  I haven't seen her better for some time.

We had company yesterday afternoon, 2 close friends, and I won't name names, but I do want to appologize because Anne and I were not very sociable while you were here.  I keep saying this, but Anne is 'in slowslow motion', and I was just plain tired (maybe relaxing) when you were here.  It was good to see you tho, and Anne was happy to see you too, so please forgive us if we weren't very lively. 

Tomorrow will be made interesting where we'll be getting some snow between midnight and noontime.  It's sounding like a nice blanket will cover the ground between those hours, and then the sun is due to shine.  Gotta love those warm sunny days following a snowfall, with the accompanying bright blue winter sky, then listening to those clean drops of water spattering down from the trees in the sunlight.

Move day, full day Tuesday

Hi friends and family,

What a day we've had, full of activities.

Starting last night at 5pm we got word that MMC would be ready for Anne at 10:30am. 

I arrived at Springbrook at 9:30am to get Anne ready, then like clockwork, at 10am today the ambulance vehicle pulled into Springbrook and Anne was taken from there to Room 575 in Gibson Pavillion at Maine Medical.

Anne was having a nice morning before leaving Springbrook, doing well, but tired.  I asked if she was keyed up about moving back to Maine Med and she said 'yes'.   She said she hadn't slept very well overnight.

It is making such a difference to be here.  It's brighter, cleaner, there are professional nurses everywhere.  Anne is pretty psyched to be here.  The transition here was good, at least until they tried to install Anne's IV.  It took 4 tries.  Perhaps her veins are worn.

Dr. Ebrahim came in around 3ish.  He had waited for blood testing results to come back.  He was totally encouraged about Annes blood testing results this afternoon.  He said the blood protein numbers were much better than he expected, which was encouraging as an indication of her liver function. He said lots of her numbers looked good.  What a relief to see him.

He wants to remove at least one litre, or 2 pounds of fluids from Anne's body every day.  He may stop when 20 odd pounds are reached.  It will be done methodically.

Shortly after getting here and settled I had asked the nurse to replace the catheter that Anne came here with from the other place.  I was never happy with how it was working, we had asked to have it checked several times last week, and it seemed every night that Anne would call for the nurse to tell her that she had an urge to pee.  That didn't make any sense. Anyway, the catheter has been replaced with a shiny new one. 

Dr. E. has ordered lasix via the IV.  And another diuretic drug he called Bumex.  I haven't looked up the official spelling.  Our nurse also said they're going to use a diuretic called Spironolacton.  Maybe that is the Bumex.  Everything has 2 names ya know.  None of the Ethacrynic Acid will be used anymore.  I was told the IV lasix is way more effective than the pill form.

I can't tell you how pleased I am, and emotional too.  The fluid is flying thru this catheter into the bag.  I can litterally see the fluid rising in the tube.   The bag was emptied once already, only 1 1/2 hours after it was set up.  It holds 2500 ml, and it was almost half full, filled up to the 1000 level.  For the past week we've been waiting for something like this to take place, but it never did at Springbrook.  We don't know if it's the catheter, IV lasix, or a combination, but we're so relieved about what is going on here.

Today it was good to have some of Anne's friends and co-workers from Town Hall come in to visit her.  I actually asked them to come in and they couldn't wait.  Anne was glad to see them.

Dr. E. had ordered a Picc Line for Anne this afternoon.  That was after the IV had been installed, oh well.  The Picc line is like a central line, a fixed IV near her bicept that is sort of like a medi-port in that it can be used to administer meds, blood can be drawn from it, and it can be used for up to a year according to the tech who installed it.  They did it with ultrasound machine (?) and it took about 45 minutes to complete.  It is working like a charm, so the IV that was so troublesome to install has been removed. 

Laurie has been spending tons of time with Meme this past week, and we're so grateful for the help she's been.  She is so nurturing and loving.  It's been great.

Dana and Laurie have teamed up to take care of our pets Dixie and Beasley every day since end of November, and I am so grateful for that.  I don't know what we'd have done without that help.  I don't have to worry about it, and the pets are very important to Anne and me.  What a relief.

Tonight Anne ate her supper of haddock, mashed, green beans, and a tossed salad with ranch.  I think she enjoyed her dinner a little too much, and now she's complaining about belly pain.  It's getting worse by the minute.  She must've had that 'one or two bytes too many'.  Poor kid.

Another thing about today, the Dr. didn't order her the the oxycodone.  Anne's been living on it for months.  But, this afternoon when Anne had pain they offerred Tylenol 650, and, low and behold, it did the trick.  I like the thinking.  The fewer narotics the better.  We'll see.

It's 8:20pm now and I'm ready to head home on this icy night.  It'll take me a while to get there this day.  I'm so much more comfortable leaving Anne for the night than I was last week.  I hope she'll have an ok night, but right now she's fighting thru alot of belly pain.  As soon as it starts to calm down I'll say goodnight.

Monday, we have a plan

This morning I had a need to get in touch with Anne's Oncologist.  He has always pulled things together for us, and I felt like we had become estranged since we came here to the Springbrook Rehab and Nursing facility last Saturday.  I got a hold of Dr. Ebrahim's nurse this morning as soon as MCCM opened, and low and behold Dr. Ebrahim called me and Anne back at noon.  He hadn't had an update on Anne since last Saturday, so he asked me for the low down.  He wants to get involved and help us out.  He has a plan.

I told him that here at Springbrook we haven't made any progress in terms of reducing the fluid that has collected in Anne's body.  They have done all they can and Anne hasn't shed one pound of fluid all week 

In terms of PT, Anne has been here for 9 days and has shown only minimal improvement physically.  She can stand now without getting dizzy.  She stood for up to 10 minutes last night as the nurses fiddled with the catheter.  During the day she was up from her recliner several times, and she moved around between the bed, recliner, and comode with a walker, but no big strides.

For these reasons, I was eager to 'go for help' and make something happen today, actually, you might even call it my first 'panic attack'.

Dr. Ebrahim agreed that we've reached the law of diminishing returns here, and he's arranging for Anne to return to Maine Medical Center, probably tomorrow, for some aggressive diuresis.  It involves using drugs to pull the fluid from her body, and some serious and close monitoring, more timely blood testing than can be done here at Springbrook.  Anne is on board and OK with this plan. 

We hope and pray that this effort to mobilize the fluid will produce results.  It's important for Anne's well being because some of her blood counts are low now.  I pray this will help Anne feel better.

Anne wants to be at home as soon as she can, she is interested in the Paliative Care concept of being pain free, and as you know in her heart of hearts she would like to be on her feet. 

    

Plan for Sat

Hi Friends,

Today I'm going to take Dixie in to see Anne. 

Aside from that I have placed a call into the Maine Center For Cancer Medicine so that I can explain the situation to the Oncologists as soon as they return my call.

I need to focus on how to make Anne comfortable, and to discuss her wishes with her going forward.  Anne has worked as a hospice volunteer, and she's aware of facilities and options available to her.  We will be having this discussion today, with that and in consideration of what medical professionals say, we'll be making decisions on how to proceed.

Rest asssured that Anne is loved and in good hands, and she will actively participate in the plans for how we move ahead.  She told me she does not want pain, and she wants to 'die well'.  These are my goals now. 

I know that her family wants to be there for her, and at the right time, and I do my best to keep you informed.  In my minds eye, we will decide on a wonderful place where she'll feel like she is living out her life as she dies, rather than fight for the rest of her time.  It would be a place with first rate nursing, where Anne will have a clear mind, be communicative, and where family and friends can visit and share time with her in.

I'm not giving up positive thinking.  No one knows how long Anne will carry on.  At this point just trying to take care of Anne, to be with her, surround her with love and care, find the right mix of medicines, and make her comfortable in any way possible for as long as she lives.

Friday Evening News

First part of today was good for Anne.  Her head is back and alert, her eyes clear, her sense of humor is returned, and she is up and around just a little bit more.  She rode a recumbant bike today in the gym at Springbrook, and the PT said she's doing so much better.  She still needs help to get up out of her seat, and she cannot freely walk.  

Anne's been eating better for the past 2 days too.  She hadn't asked for any pain meds since we got her off the oxycotton, that's until tonight after supper.  I'm certain she had one or two too many bites of the chicken lo mein served for supper.  At least she had the appetite, and she enjoyed it.

I'm very sad though to let you know that we got some bad news from Dr. Steinbrecher tonight around 5pm.  Right now, when we're thinking Anne is on the mend, she was weighed and then we learned she's only lost one pound of the body fluid all this week while taking the dieuretics.  They're not doing the trick, and her body cannot seem to shed the fluid, or should I say move it to where it needs to be, in her vascular system. 

Her legs and feet are looking better and better, but all of the fluid we've been telling you about is still with her, problem being a lot of that is now in her mid section, near her abdomen and other organs.

With that, the Doctor said her liver is not able to make protien that her blood needs.  She said her organs are struggling with the fluid surrounding them.  She reiterated, it's a very serious situation.

The Doctor said that the cancer is complicating matters.  She warned that when esophageal cancer returns, that it's dangerous. 

She also said with this fluid around her abdomen (Anne's tummy is very tender) there is always an increased risk of infection.  Also that the fluid could affect her lungs.

All this news threw us for a loop, and we were somewhat shocked for a time.   I asked Anne if she feels the cancer, and she responded, "I feel the pain."  This girl has been thru hell and back the past 2 years, and is in the fight of her life right now, however she still has never complained and she is somewhat at peace with it all.

The plan is to enhance the dieuretics over this weekend with the additional one that was being used at Maine Med 2 weeks ago.  They'll start the new one in the morning (it's a once a day med), and set up a catheter to make it easier on Anne to pee.  We hope and pray that her body responds so it can shed fluid this weekend.  The Doctor will be back on Monday and we'll see where we are.  We pray that her liver will then recover and be able to create the protein that her blood needs.

Thank you for your prayers everybody.