Sluggish today, Noonish

Hi Friends,

Yesterday I seem to have taken a day off from blogging.  I missed it.  It felt like I left you hanging.

For various reasons I left my laptop and shoulder bag in the car, in the parking garage all day yesterday.  I wasn't in too early because I had some help from Adam in the morning to move Dixie's kennel out to the front yard, where it now can sit in full sun on good days.  Anne's son Luke beat me in here yesterday.  I took him to lunch and then he left town for home in NY.

Anne is very slow to recover.  It is concerning.  She's clearly not happy when she's tired, and she's tired alot.  She's at her best after she's been able to sleep soundly.  I'm not encouraging any visits outside of family, and brief ones at that.  I've been here for an hour now and she has been nodding out the whole time.  I will sit quietly.  Bobby and Deanna were here when I got here today.

PT was here for a time yesterday afternoon, encouraging Anne to move her legs in beneficial ways.  Then the dietician was with her, encouraging her to eat more protien.  Then she slept nicely and had a pretty good early evening.  She had a banana, chocolate milk, and PB+J sandwich (1/2) for supper, had some pain, then later I left at 8pm, after Jeopardy.


A MMC 'care coordinator' called me today as I was entering the parking garage, then we met.  She's thinking about Anne's next move, whether she needs PT or Rehab, etc..  Once Anne is medically squared away they'll kick her out of here, and we'll want to have a plan for that day.  The care coordinator told me she hadn't spoken to Anne's doctor yet, so I suggested that she do that before we talk again. 

I'd like to see Anne well enough to get up daily, and shortly go to the Rehab hospital (if she needs it) on Brighton Ave.  Hopefully she'll be mobile by then.  It might be wishful thinking, I hope not.  I would not say she's improving in leaps and bounds, and she isn't very cheery today because she's tired.  As I may have said before, she says she wants to go home, but her hips, legs, and feet are still swollen, and she's not up and around in any way yet.  If I can keep her chin up, and keep her focused on 'today', then I think she'll get better.  To think too far ahead now would definately overwhelm her. 

It seems that just having to listen and converse with others is a heavy load for her at this pointin time.  She continues to sleep.  All good.

Late New Years Day, 5pm

Anne has done serious sleeping most of today. 

Last time she spoke to me she was concerned about her legs, with all the fluid in them, and that she can't do anything with them.  I bolster them with pillows, or move them around for her when she asks me to.  I told her what Dr. Evans said, that it would be a couple weeks for them to come back to normal.  I sensed some dissappoined in her, just a little.

I do my best to encourage her, and let her know she'd be like new soon.  It's a slow process for sure.  I'd be dissappointed too.

For lunch she ordered a banana, strawberry yogurt, lemonade, and vanilla ice cream.  She hasn't eaten any yet.  She's so tired, but she is coming around.   

Happy New Year, Noonish

Hi everyone,

(Aside - With year 2012 here, you might loose visibility to the end-of-year 2011 posts.  If so, just click the dates on the right hand side of the screen near the latest post, just below the pictures.)


I'm sitting next to Anne as she sleeps.  According to nurse Tai Anne had a good night.  I know she enjoyed seeing her son Luke who appeared out of no where yesterday.  A good thing...  Tai said Anne spent the morning in the recliner, and when I got here around 11 today she pushed the button and told the nurse she wanted to get back into bed.

Yesterday after having an uneventful lunch her supper bothered her tummy.  Just two bytes of caesar salad w/ a crouton, and one bite of baked mac and cheese.  That's all it took.  She had made a salad at home a couple weeks ago, and it worked for her, so I thought it might be worth a try.  She didn't ask for meds this time tho, she got thru it.  Tai said she had a couple bytes of breakfast today, and it was OK.  Then she struggled with a big potassium pill tho, and she vommitted.  He said he didn't think it was the food that bothered her, rather the pill and I agree.  She has a tough time with smaller pills anymore, nevermind the large ones.   

This eating game is just something Anne will have to live with I'm afraid.  She'll make choices.  She'll either make a science of it, track the good and the bad, and pay attention, or she'll eat what she wants, enjoy the moment, and pay the price.  'It is what it is', as they say.  I don't want to say much, cause I wouldn't want to walk a mile in her shoes.  Once in awhile you just want something.  She'll try, but when she wants something she can have it.

It's Patriot game time.  Anne and I usually set up and watch it together, but she could give a care about it today.  I'm happy to have the volume set to zero, and let her sleep.

Nice quiet Saturday, Noonish, New Years Eve

Hi there friends,

Last evening Anne took 2 Ativan for nausea around 7pm, and that was a good time for me to head home.  I knew it would put her near dreamland. 

Around noon yesterday I had given away my ticket to the Celtics opening game last night, so I went home and watched it on TV.  Funny how things work out since they don't have comcast sports net/boston on the TV here in the hospital.

I didn't worry last night, and when I called this morning the nurse said Anne had a great nite of rest, and she was sleeping.  She had spent time in a recliner with help before I got here.  I got in at 11:30 today (feels like a day off)  and she was back in bed.  Her brother Bobby was here.  He's been sneaking in for quick visits lately.

The nurse, Ty, asked Anne if she was hungry and she said yes.  It's the first time she's wanted to hear the words 'food' or 'drink' for 7 days.  Ty read the lunch menu to her, first entrees, then vegs, then drinks.  Anne very slowly answered each time with her preferences.   She had a small amount of broccoli, and baked potato.  I don't think she liked the gravy on the pot roast.  She lit up when I broke out a small piece of the edge of a coffee roll I picked up for her at DD this mornin.  She ate that too, drank her small lemonade, and said 'that's enough'.

I totally figured that since she actually enjoyed the food, that her stomach would make her 'pay the price'.  I'm wrong so far (knock on wood).  She is snoring right now, sleeping good.  She was in and out before lunch, but in dreamland now.  If she tolerates that food I'd classify it as a miracle.

Dr. Evans came in and is happy with what he sees.  He said the swelling in her legs and feet will take at least a couple of weeks to go away.  He said they cancelled the CT-Scan yesterday, 1.) because her test results have improved so much, and 2.) because they're no longer highly concerned about the clot.  He said they fully expect the drugs to clear that up.  I thought it was a dreadful sounding thing, and he calmed me down.

I want you all to know that our prayers are being answered.  Thank you so much for those.  There's hardly anthing else anyone can do, therefore  nothing as important.  Thanks again everybody, and a Safe and Happy New Year to you.

Roller Coaster, 11:30am

Hi All,

Once we got settled in Gibson yesterday afternoon things went downhill.  I'm thinking it will be best going forward that only one person can be in with Anne at any one time.  Conversation itself seems to exhaust her.  There were 3 of us here yesterday afternoon, and evening, and she was glad to see folks, but she was 'junk' last night to the point we were afraid to leave her for the night.  She has not been able to push the red button on her own, a worry when it comes to leaving her.

Later, once she was able to shut down the lights and have quiet, she went right to sleep and did so like a baby, and she snorred away to dreamland.  She did so for 2 hours between 9 and 11pm, was stable, and then I felt comfortable going home. 

This morning they informed me that Anne wanted me to get in here to sign a consent form.  Anne hasn't been doing that.   Just to sick.  It was for a CT Scan that they said she was strong enough to have done.  Well, I got here and they had cancelled it.  Saying that her labs etc. have been improving so much that they don't want to do the CT Scan after all.  Not sure I get that, where her belly is still bothering her so much. 

Anne is in a recliner now, and her legs are up with 4 pillows holding them there.  She said it makes her legs feel good.  Her legs are bursting at the seams with fluid, and actually weeping drops last night.  They will soon start some diarhetics to treat that, being careful not to dehydrate her again.

Her kidney labs are back to nornal.  Her liver labs are still elevated, but coming down.  She still has the clot, but they have taken her off of the Heparin drip and changed it to a twice a day shot in the belly of something else, which is a positive sign according to her nurse today who I like very much.  I know the Heparin shot to the belly always hurt her, but this one did not. 

The only IV drip left is the antibiotic which fights the staff infection.  Her white blood count is down to 8.6 today, which is a normal range.  She has fought this down from over 19 this week.  I said yesterday that she had that infection licked, but not quite I guess.

She has basically had her eyes half open all this week with the sickness.  It is troubling.  She only makes brief comments on occasion.  One can see her drifting in and out.  However, when the nurse came in to share the results of the labs, Anne's eyes opened wide and I was so happy to see that.  It didn't last long, but what a relief......

When I got here this morning we had a solemn talk about how she is, and what she is thinking about.  It was an honest talk, and she was glad to have that with me.

Dr. Evans told me he feels she'll recover from the hellacious month she has had, and that time is and rest are of utmost importance at this stage of the game.  She is still in and out of it.

Her brother Bobby visited briefly this morning, but Anne doesn't remember seeing him.  Erika is here for a day from Connecticut, got here yesterday, and Anne didn't remember it this morning.

We pray for Anne to feel better and turn the corner.

Bye bye ICU, Hello Gibson, 1pm

I never thought we'd be happy to arrive at Gibson Pavillion, but it is happening for the second time this week.  Christmas Eve I was relieved to have Anne admitted, and today we are released from ICU back here, a good thing.  We are extremely grateful to the staff in ICU.  It worked like clockwork for Anne, and took care of her in what seemed a short time.  We couldn't have written the script any better and I'm thankful to them.  Job well done.

Anne and the doctors in ICU have licked the staff infection in Anne's blood, and her kidneys continue to improve.  She's in a wheelchair right now being brought here to her room 564 at Gibson.  Day light awaits her here on the 5th floor.

Her white blood numbers over the past 4 days have gone from 19.4, to 17.6, to 14.8, to 11.4, and today to 10.6.  I think it means they are winning over the infection.  Blood cultures are coming back negative now. 

She still cannot have a CT scan, her kidneys are not that well, but soon they will check for the status of the clot, and do some checking into her belly pain.  She is back to square one as far as belly pain.

ICU update, Weds 2pm

Hi friends,

Anne survived the surgery last evening that would remove her medi-port.  They took her in at about 7pm for that, and I figured it was a good time to go since she'd be groggy following the procedure.  Dr. MacGillivary called me after he finished and said it went well, and that he removed the fluid from her abdomen.  He said they will certainly test the fluid, but that it appeared perfectly normal to his naked eye.  Nothing concerning about it.

Today she was sitting up when I got here, and it was a sight for sore eyes.  My Dana came in with me today, she called and said "I'm going in", and she'd stay for a couple hours with me and Anne.  Anne's not flying around the room, don't get me wrong, just sitting up for the first time in a long time.  Her eyes are still half closed, she appears exhausted, she's in and out of contiousness, and her body is fighting the infection as best it can.  Her white blood count is elevated, not super elevated, but enough so that they know her body is fighting hard.

They say her kidneys are slightly better as evidenced by her increased ability to produce urine.  She had produced none overnight at home Christmas eve, and none for a couple days in here thereafter.  Yeah.

Here they've accomplished one goal of taking her off of the meds that were managing (maintaining/increasing) her BP.  Now it is a little elevated, running between 140 and 175 (on the higher end of that), but it's not driven by drugs.  A good thing. 

I reminded the nurse and doctor that her BP meds were discontinued when she was admitted, due to a low BP.  Now they have ordered a beta blocker, something that should help to bring her BP down some.

Yesterday I learned that they were treating with Heparin (blood thinner) to take care of a blood clot discovered in the inferior vinicava (sp??).  That's a vein near the kidney.

I asked when they'd be able to check the status of the clot, to see if it was shrinking, moving, or desolved, since it was found Monday night (they had forgotten to tell me).  They said the best way to check it is by a CT Scan.  They cannot do one of those tests at this time however, because her kidneys are not functioning well enough.  Reason being a CT Scan uses a strong dye, and the only way for the body to get rid of that is thru a healthy kidney.

Anne is 'afibrile' (sp??), which means she has no elevated temperature.

She is basically sleeping, resting, making a few comments to the peanut gallery when she awakens, dozing off again, snoring, resting, and fighting the fight of her life. 

I'm encouraged that they have been at liberty to say they think she is a little bit better, also that her BP is getting back to normal, and that her kidneys are functioning better.

I thank all readers for being there, interested and keeping up on how Anne is doing.  Thank you for your continued prayers.  It helps so much.

ICU Update, 4pm

Hi Readers,

Anne is doing better.  She is in and out tho, confused sometimes, etc..  The infection is being treated, and her BP is good.  She has good color in her face.

An unfortunate thing is that she's going to have her medi-port removed tonight.  It will be done in Surgery so she can be sedated.  It could be done bedside, but that would be with more of a local anesthetic, and more painful for her.

Aside from that they have found some fluid around her abdomen from the Hernia repair surgery.  It is normal to have this, but they want to extract some and test it for infection.  In fact, they will try to remove most of it while they are at it, using a needle.  This will also be done tonight while she's in Surgery having the port removed.  It's a "relatively small thing" to remove the medi-port, but I don't feel good describing it as such, what with all that Anne has gone thru already.

Pray for Anne tonight friends.  Of course we aren't thrilled about another surgery at this time, but there's really no choice, it has to be done.  I have talked with the surgeon and put him on alert, so he knows all of our concerns.  The rest is in God's hands.

ICU Update, 1pm

Dr. Tracy Mae came to talk with me.

First of all, she confirmed that they do have good luck in solving blood infection problems all the time.

The central line they put in Anne's chest last night is like a temporary medi-port.  They do not want to use Anne's real medi-port for fear that it might be the cause for infection.  The central line will only be used for a couple days, but they can check volumes and metrics they need to monitor thru it, and they can administer meds thru it.

They are consulting with Dr. Ebrahim today to consider removing the medi-port Anne had installed earlier this month.  Reason being it is plastic and infection can 'stick' to it.  Sounds like a 'no brainer' to me, unfortunately for Anne she likes having the medi-port, something to do with hating IV's, and they are no fun to have installed. 

ICU, and a little better today

Mornin (OK, good afternoon.  Details,details...)

Anne is a little better today, albeit totally wired up in a very technical environment, where she needs to be closely monitored.

Her legs have those pressure stocking mechanisms on them.  They installed what they called a central line in her chest last night right after she got here.  I will find out more about that today.  There's alot of wires connected, but she's resting comfortably at this moment, snorin' away. 

She'll wake up and ask what time it is, or ask for a drink occasionally.  She wasn't doing these things yesterday so I'm encouraged.

Anne  has a staph infection in her blood.  I haven't been updated by a doctor yet, but I asked for that, and the nurse told me they clear up infections like this all the time.

Her BP is getting better.  The nurse said the goals today are to work to get her off the meds that are stabilizing her BP, and to administer antibiotics in order to clear up the infection.  As I said, Anne is a little better.

It's not a comfortable room for visitors, nothing like the Gibson Pavillion, and I don't think that visitors would benefit Anne right now anyway.  I'm pretty sure she just needs to focus on herself now, and on breathing and resting.

Move to ICU

It's been a trying day.  Anne has had good care in Gibson.  When I got in here around 10am she continued to sleep for over an hour.  On waking up I noticed she was dead tired.  Her eyes were not opening all the way, and she seemed confused a couple times.  She wasn't herself. 

She had a couple of spasms of maybe trapped gas pain in her upper abdomen this afternoon, and just about climbed out the side of the bed in pain each time.    

Dr. Evans is the oncologist today in Gibson Unit 3, and it seems Anne has finally convinced some one that her tummy is in some serious distress.  She got thru to him and he began putting the wheels in motion to find out what is going on in there.  One of Dr. MacGillivary's surgeons came in today too, and I was impressed with her.  She seemed eager to get to the root of the problems too.


At one point this afternoon everyone in the area was suddenly in Anne's room.  There was alot of activity and apparent worry.  Doctors came out of the woodwork.  Her heart (remember, strong like bull) was racing, and her blood pressure was undetectable (due to the racing).  An xray was going on, a catheter being put in, and a doctor from ICU was invited up to observe and evaluate the situation.

Dr. Evans ordered more stomach xrays/ultrasounds, since that is what Anne complains about most.  Blood cultures have been taken and are being evaluated.  They're concerned and looking for an infection, which was unexpected to me since she's not had any elevated temperature.  It could be anything, but I am feeling more confident that they'll find what is wrong soon, and of course I pray that she'll respond to any treatment.  There's no doubt, she's fighting... 

Around 4pm up at Gibson it was decided that she belonged in ICU.  It scared me, but now that she is here she is being stablized, and I'm impressed with those taking care of her, and with the condition of the area.  It is on the ground floor of MMC and it's like new.

The people helping her are amazing.  They kept me out for about an hour as they got her settled, then Allie came to see me and took me in.  Anne saw me coming and waved at me when I walked in.  That was HUGE relatively speaking, for this day.  Anne's sense of humor is showing thru too.  She dozes in and out tho. 

They are treating her with antibiotics and I was sure to share her list of alergies with them.  She can only use a few antibiotics and they were on top of that.   Also, she cannot lay flat, which I worry about all the time, even at home (risk of aspiration), and they are aware of that.  One thing we don't need at this time is any self inflicted pain.  I feel she is in good hands, but I'm at the same time very concerned.

I think she is better than she was earlier today.  I think she can rest here in ICU.  The blood culture results take 24 hours.  We'll know more before long.

Merry Christmas to All

Merry Christmas All Readers,

Well, where do I begin?  You probably noticed the tone of last nights post.  I was feeling helpless and worried, and it may have worried you. 

Well, it was a rough night, and during that time I held off on calling the VNA nurse to ask her to come early today.  Then around 5am it hit me, just how poorly Anne was doing, not getting better, and whatever we were trying to do at home wasn't working.

I called MCCM 'hot line' maybe 5:30am and the on-call doctor called me right back.  I told Dr. Hedlund what was happening, and asked her to please 'pave the way' for Anne to be admitted to the Gibson Pavillion (Cancer Unit) at Maine Med.  She was agreeable and said, "Head on into MMC Admitting, and I'll see you at Gibson in a few hours".  Anne and I were so relieved that we would not be taking the ER route. 

It was tough to get Anne ready to go.  She was just unable to do it, being so weak and worn out tired.  Dressing was about all we could handle.  I knew there was no way she'd be able to walk down to the driveway and car.

I called 9-1-1 at maybe 7am and began negotiations with them to just get some help getting Anne situated in our own car.  They have a tendancy to want to 'take over' the situation, call the shots, and take and leave the patient at the ER.  But, I said "No, we only want help to get in the car".  I convinced them that from there I'd provide a smooth ride, safely find Maine Medical's front door, a wheelchair, and that we'd be all set.  They accomodated us, and I'm eternally grateful for their assistance. 

The VNA nurse (by the way) called when we were leaving the house and was ready to come over.  I told her she didn't need to, and I'm glad she caught up with me.
Anne and I have been here at Gibson all day in Room 555.  She is getting excellent care.  It's a huge single room.  You could eat off of the floors here.  What a relief ! 

She was dehydrated when we got here (even with all the extra water weight) so the fluids are running.  I'm impressed with Dr. Hedlund and all of the staff.  They understand because they specialize in taking excellent care of nothing but cancer patients.

They've taken a chest xray and a host of other tests since we arrived, checking Anne all out.  We don't have alot of specific news yet.  Her bladder is basically empty though, hence the fluids.  I'm confident that Anne is clearly better off and resting comfortably, in good hands, right exactly where she needs to be.

It's Christmas eve, after 9pm.  Anne is resting in bed. 

This has been a tough few days since I wrote on Dec 21.  At that time it seemed that Anne was bouncing back ever so slowly.  Since then tho, she hasn't been feeling well, and I have to say I'm worried that she hasn't gotten better for the past day and a half.  She has no energy.  She still has alot of excess fluid weighting on her hips.  The swellling in her ankles has gone down slightly. 

Since starting on the flulid pills late Monday Anne has lost between one and four pounds each day, except for one.  She gained a pound today, so I called to report that to the VNA nurse.  She said I shouldn't be alarmed if Anne doesn't loose weight every day.  She needs to loose about 15 more pounds tho to get back to her normal weight.  I think there must be something else that will help. 

I spoke to the nurse about my fears as far as how Anne's progress has slowed down.  That Anne is exhausted with the slightest activity.  Has alot of belly pain and some nausea, which we continue to try to manage with meds.

I'm concerned with Annes total lack of energy.  Today she came to lay on the bed in the afternoon and did not return to the living room.  Tonight when she got up to get under the covers I helped as usual and asked how she felt, and she said "I feel like that was alot of work". 

Food just isn't appetizing to her anymore.  I'm worried she needs something she's not getting. 

I considered taking Anne into the ER today, and we discussed it, but she didn't want any part of that.  She doesn't think they'll help her.  It's a lousy process anyway, to go in there, spend hours being checked by strange ER doctors, spend hours having to review your life's history with them so that they can take a shot in the dark or admit you into the hospital next business day.  I must say tho that Anne's life history usually scares the crap out of most ER doctors to the point where they don't dare to touch her.

The VNA nurse I spoke with today said the on-call nurse Anne (we know her) will call and come tomorrow.  She'll evaluate Anne and help us to line up any kind of support that Anne is not getting that she needs.  I'm worried that what we're doing for her at home now isn't helping her.  I entertain thoughts that Anne could get better care at the hospital, and that they would be able to help, maybe find something wrong that we don't know about and take care of it. 

Please pray that Anne turns the corner and finds strength tomorrow.  I continue to tell her that this will happen and she will feel better.  She is discouraged today.

Coasting....

Another week has passed us by since updating the blog.  We must be coasting.  Anne is getting better and better, little by little, as far as the surgeries on her tummy. 

We had a couple visiting nurses at our place last week, and on Thursday one of them discovered that Anne had gained 20 pounds of water weight, just since Monday.  Anne knew her clothes were getting tighter.  We knew her ankles were swollen when she came home from the hospital a week ago Monday, and we knew how much difficulty and pain she was having moving around, getting out to the car, etc, but we never realized how much fluid was in her body causing these problems. 

We mentioned the swollen ankles on discharge from the hospital, but no one there thought it was a big deal that day.  We called our PCP last Thursday very concerned about the swelling, but they had no time to see Anne until Tuesday this week. We negotiated for Monday.  Anyway, that's when we finally got scripts for fluid pills and compression socks, collected those things (the compression socks proving to be almost impossible to find) and they are beginning to help Anne with this problem.  She is finally beginning to feel some (not much) relief, eating slightly better, etc..

Anne is still reluctant to embark on more chemo treatments, scheduled for today, it being Dec 21.  She is apprehensive about it.  So, we want to delay this for at least another week.  That'll allow Anne more time to heal, and it will make for a more enjoyable Christmas weekend for her.  As you remember, the last chemo treatment lasted 3 days and made Anne sick for 6+ days.  Hard to look forward to doing that again, that's for sure.

There may not be much news from here for the next few days.  We hope you all are able to read this and keep up with Anne's progress, and we wish all of you a very Merry Christmas.  Our best to you and you're loved ones.  Thank you for your prayers.  It means alot and feels good just to know you're there.