Monday, Discharge Day

Anne called and woke me this morning, all excited to come home.  They had ordered her some breakfast, and told her she'd be discharged.

She looks and is feeling better than she has for some time.  So happy for Fridays surgery, that it has helped her so much.  The other procedures last week didn't afford so much relief, and it was discouraging, but this hernia fix has made all the difference.

Anne called me twice more before I got here.  She's very excited to roll out of here.

I'll be giving Anne an especially smooth ride home.  They have taken good care of her in here, and she'll get more of the same at home.

More later friends !!
Thanks for reading, and for your kind thoughts and prayers.  Know that Anne is so much better today !!

Feeling better without the hernia

It's Sunday.  I got in here to see Anne around 9:45am.  I want to thank Bobby and Deanna for coming in last night between 5 and 7pm.  It helped us out alot, I got home early, and I know Anne was glad to see family.

Anne is definately feeling better, still with pain tho, and not ready to go home.  They haven't given any solid food yet because she hasn't passed gas yet.  Positive or Negative???  HAHA

She isn't using any IV at the moment, rather they've converted her to oral pain meds.  We need to be sure to keep ahead of the pain tho, by getting her the pain pills on a timed schedule.  Also, they aren't concerned about dehydration at the moment, so no fluids are flowing.  I'm concerned tho because her feet and ankles are swollen, but the nurses aren't too worried.

Anne was able to walk down the hall and 'around the block' today using a walker !!!

She IS getting better.  I can tell she feels better without that hernia, so our prayers were answered.

We're hoping she'll stay on plan with the chemo, scheduled to start-up again on Wednesday.  We may not be looking forward to it, but we know it's best to keep on schedule.

The nurse just came in and told us her potassium level is down, so, the IV will be used once again to administer some of that.

Anne is dozing in and out.  She enjoys watching the Patriots game, as usual for a Sunday.

Day after hernia repair

Happy Saturday everyone,

First of all, I want to mention that Erika called last night.   She survived  thyroid surgery yesterday.  She was in the OR just about the same time Anne was.  She said she couldn't talk long because her voice wouldn't hold out.  Stands to reason, after all I'm sure they 'slit her throat'.  So, I was surprised that she herself called up.  She sounded good, and it was great to hear her voice.

For Anne, she didn't remember anything that happened after surgery yesterday, or anything from last night.  Today I reminded her about Erika's phone call.

Anne looks as though she's doing well.  She has pain from the surgery, but Dr. MacGillivary said to expect it for a couple days.  There are 14 holes in Anne's abdomen.  I'm not sure, but I suppose 4 or 5 are like a 1/2 inch gash.  One of them was used for a camera, and the others are for the tools which move the mesh and position it inside to where it needs to be.  The rest of the holes are smaller, stitch holes from where the mesh is secured to the muscles inside, all around the area.

Anne has a push button she can use to administer pain medicine, as needed, to some limit of course.  She's used it several times since I've been here.  I've been told the holes in her tummy will look like a clock.

Anne told me she has been up and walking in the hall.  Good stuff.

I was thinking at home this morning, I don't ever remember Anne being released on a weekend in the past.  She may have insisted once, but I suppose if you're here on a Friday and don't get out, then chances are you might be stuck for the weekend.  She isn't interested in going home today anyway.  All good.  She isn't getting around that well yet.

They've changed her pain medicine from dilotted (sp?)  to fentanyl.  They did this because Anne was very confused overnight on the dilotted.  They said the fentanyl will be better as far as leaching thru her system faster, and managing the pain too. 

Hernia Repair Day !!

Hi readers,
We were up between 2 and 3am with Anne having pain, but this morning at 8:30 we arrived at MMC for the hernia repair, and Anne had pink cheeks and smiles.  Finally this day has come.  We're hoping she'll feel alot better after she gets past this surgery.  Then, there will be only one thing to think about, chemo-therapy.  As you know, this is the last of several things (procedures and surgeries) that have happened to Anne during the past 2 weeks.  It's been alot.

At 10:45am she was taken into surgery with her Dr., Dougald MacGillivary.  Yes, that should ring a bell, he did the esophagectomy 1 1/2 years ago.  This surgery was expected to take more than 2 hours.  Now it's 1:40pm.

Speaking of the devil, Dr. MacGillivary just came out and said it went very well.  He said Anne might be a very uncomfortable for a couple of days.  He said she should spend the night here at least tonight, and we'll go from there.

She'll be in recovery for at least 1 1/2 hours, then I can see her.

I'll write more later.

Thanks for being there, and for your prayers.

More to come....

Thursday Morning, a good one

Good day,
Anne is home from treatments this morning, she's had lunch, a pain pill, and is off to dreamland for the afternoon while I go to work.

The ride went well, and she's doing better than yesterday.  Real glad there was no snow on the ground this morning around here.  It's a nice day.

Tomorrow mornin we get to Maine Medical Center at 8:30 for her hernia repair surgery at 10am.  They will have fluids connected to her there, so no special hydration appointment needed tomorrow.  If she feels it's needed over the weekend I'll make those appt's tomorrow.

I'm reminding Anne to call Erika later tonight.  Erika is also having a surgery in the morning tomorrow.  Good luck Erika !!, and we'll talk later.  Thinking of you and love you very much !!

General TSO's Chicken !!

Hi all,
It's the first chance I've had to write today.

Last night Anne called me as I left the job.  She asked if I was interested in picking up some 'take out'.  I was pleased that she was up for it, however  cautiously optimistic.

After 7pm we had Chinese food at home, it was late for her to eat.  Let's just cap this off by saying it was an awful night with Anne being up for the most of it while I just listened to her struggle.

She was pretty wiped out this morning.  We had twin dentist appointments at 8am and we made it to them.  After that, Laurie visited at the house and it was a blessing.  Anne had her eyes closed for alot of that time, but I know she was happy to spend time with family.

At noontime Karolyn arrived ready to take Anne to her hydration appointment at 1pm.  We couldn't get it scheduled for the morning this time.  On their way home Karolyn took Anne to the church so she could pick up the Treasurer's mail, then they shopped a bit at the grocery store.  So, Anne was very active today on the whole, and even on the way home from hydration in Scarborough.  All good. 

I worked earlier than usual today, an early dismissal day for the kids, which means the teachers had a big meeting together this afternoon.  So, 'After School Program' today was 5 hours long, not 3. It was fun.

Anne tolerated a one egg omlette and piece of toast for supper tonight. She was exhausted after that, and now she's gone off to bed.

In the morning we have a hydration appointment at 9:30, so we'll be up and away by 8:45.

Hi all readers,
It was an OK afternoon Monday, not good, Anne didn't feel well.  I worked 3 hours (back after a week off) and she slept while I was gone.  Anne had a salad and tolerated it ok for supper.  She made it herself.  It was a tough evening, and just an OK night overnight.  We're on a roll.

Guess where we are?  MCCM getting hydration.  It's Tuesday am..  Anne had toast this morning and it worked for her. 

We're trying to mix the nausea meds and give them on more of a timed schedule today, whether she needs it or not, trying to stay ahead of it.   She needed a pain pill today after the hydration started.  I ran for gas and picked up a repair at GM Pollack after she drifted asleep.  This way I can take her straight home when we're done here.  We find the smoothest road surface and drive like there's an eggshell between my foot and the gas peddle, it makes the ride better for her.

Anne is not so sick today.  She's miserable, but better.  Does that make sense?  Positive or negative???  Who knows at this point?  Poor kid.

Today her friend Karolyn is coming to sit with Anne at 1pm at home.  I'm going to see Carli and Emma's Xmas concert.  I'll work after that at 2:45pm for 3 hours.  Thanks to you Karolyn !!

We're looking forward to a better night tonight.  I see it coming.  This particlar chemo mix from last week has played havoc with Anne like nothing else.  The Drs here promise to shake things up next time (Dec 14-16) to try and make it better.  It's hard for me to imagine Anne going thru anything again like the last 7 days have been, nor me.

The stress is out of her face right now as she rests.  I'm encouraged.

Thanks for reading.

Love to all.

Monday Mornin Update

We went straight home from MMC on Sunday.  I've learned, it's not worth trying to squeeze in any errands during these trips.  Anne always ends up paying the price.  All this riding is hard on her.

On getting home Anne sat and said, 'I'm exhausted'.  Next thing I knew she was up trying to cut sweet potatoes, asparagus, and cut a game hen in half.  I chipped in and we got everything cut and covered in olive oil and some salt, spread them on a foil covered baking sheet along with the 2 game hen halves.  We baked it 1 hour at 350 degrees.  It came out great.

Thing is, Anne hasn't done anything like that since before last Monday's ERCP.  She was back in her element, and feeling well enough to do stuff, or so it seemed.  It seemed good.  Problem is, she req'd a pain pill afterwards, afterall, we are on a roller coaster for sure.

We really didn't pay attention to the Pat's game Sunday afternoon because we had Dana for company.   That was a treat.

Then, I really enjoyed the meal, while Anne had just a little bit of it.  As I've said, the good Lord didn't take her appetite when he gave her the cancer.  Almost wish he had.  Yes, she paid the price for having eaten.

Anne had a better evening than usual, sleeping and watching a little TV.
Low and behold, she had a lousy night in bed with a sour stomach bothering her overnight.  She was sick on getting up in the morning too.  Dry heaves, nausea, etc.  She did ask for a piece of toast and jelly.  That was followed by diareah and she was just ill in the morning.

With that, we made arrangements and now we're back at MCCM in Scarborough noon Monday, getting anti-nausea meds and hydration.  We spoke with oncologist Julie, and she wants to prescribe an anti-nausea med to replace the compazine.  It will be Phenergan (promethazine),  Yes, it rings a bell.  Keep you're fingers crossed.

Hydration appointments have been made for every morning this week with the exception of Friday when we go to MMC for hernia repair surgery.

More later friends.  Pray for the best for Anne.  It really helps.  Thanks for being there. 

Mornin everyone,
It's Sunday and we found our way, as planned, back to Maine Med for some hydration for Anne.  We'd hope she'll not need it soon, maybe tomorrow will be the day. 


Yesterday on the way home from MMC Anne was hungry so we stopped to eat.  She ordered a cobb salad (half sized) and enjoyed some of it.  In minutes afterwards when the car rolled she was in pain.  It wasn't a good ride, and once situated at home she was still miserable  and remained so all afternoon and evening, all the while trying find the right mix of meds.  She slept most of last evening until she went off to bed.  At one point we had an emotional release together.  A long time coming and much needed. 

She had a so-so night but got up at 3am with nausea, so we got her moved to the living room. She used all of her nausea meds at that time, then later at 6am one Compazine, and one Zofran at 7:30. 

Anne had a couple of things to eat this morning, a banana at home, then a couple nab crackers in the car on the way in.  They didn't bother her too much.  On leaving the house for Portland, she took an Ativan for the ride.  Also this morning, we washed her hair, then she changed up and got ready to leave before I did. All good.....

When they hooked up the bags this mornin we reminded the RN that something apparently made Anne sick yesterday immediately after it started.  We questioned the use of the Decadrone/Zofran mix.  Anne uses Zofran all the time, but I can't recall her using any Decadrone.  I asked that they don't use any Decadrone today, and the RN complied.  Subsequently, Anne hasn't been sick with the medicines today.  We keep learning and asking questions, and get lucky once in awhile I guess.

Anne slept comfortably with hydration flowing till noon as I read the sports page.  On waking up, she said she was hungry and asked for some creamy soup, or something.  I found some cream of broccoli and she enjoyed a little, but then became sick and as a result has taken one of her pain pills.  We wonder if it's the hernia causing this pain with eating, and hope the surgery this coming Friday will afford relief for this on-going problem.

Shortly now we'll be heading home.  I hope for a good ride home for Anne.  She'd like to watch the Pats today, as usual.  We're planning to fix a game hen today, but I don't know how much eating she'll be able to do.  We pray that after Friday she'll be able to satisy her appetite with no pain.

OK, Hi everyone,
Saturday, 11:30am and Anne is comfortable being hydrated at MMC, in the ol' Gibson Pavillion.  When they first hooked her up she felt sick, but she got past that.  It's a nice facility we are familiar with from 2 years back.  We're high over Portland on a sunny day with a beautiful view.  I wish Anne was more in the mood to take it in and enjoy it.  Some other time.... 

Last night Anne really enjoyed the Holiday Celebration put on by her peers at the Town Hall.  Lot's of folks did alot of work to make that happen and it was a real good time.  Anne didn't make it to the end.  We rushed out early after the meal.  She wasn't feeling well but she attended, she was proud to have made it, and I'm glad she did. It was time well spent.  I'm sure she felt alot of love all around her. Thanks to Tom for helping us get to the car on the way out.  What a gentleman!

On the way home, again last night, she was awful sick for the ride.  Then it was a long walk from the driveway to her living room chair.  Got her calmed down with the TV on, then she woke at 10pm, doing pretty well.  I let her go into bed by herself.  It was a big deal.  Before, while the chemo was running she couldn't even walk from the living room to the bedroom, so she was better than that now, and felt accomplished I'm sure. 

Ten minutes later I checked on her and she was on the edge of the bed, doubled over, struggling in pain again.  It seemed she took her nightly meds as usual and began to suffer.  She enjoyed the food at the event earlier, said she didn't eat very much, but that may be taking it's toll on her now.  It's hard to tell.  Drugs finally calmed her down so she could sleep.

No matter how poorly she felt, I'm sure that Anne completed her nightly bedtime ritual with Beasley, our cat.  It involves treats, shaking both right and left paws over and over on command, and giving high fives to each other.  It's a real fun show.  Anne is truly amazing when it comes to raising and relating to our pets.  She trained them, they're an important part of her life, and their routines are serious business in this house, so as for them being well behaved.  I've learned alot from her. Incredible stuff.

We were up twice overnight, 2am and 5am.  She needed meds both times.  I've been afraid and cautious with the Ativan because of the warnings that it is dangerously habit forming.  However, we've learned here from the RN this morning that her pills are of a low dose, .5mg, and that 2 pills could be taken together on the schedule on the jar.  It does say 'take 1' tho, darnit.  Duh, it really pays to ask alot of questions, and to use the drugs appropriately to manage her pain.  We keep learning.

You guessed it, she was uncomfortable at home after waking up this morning (Sat.), and it was so for an hour or more till we left to come here to MMC for the 10:30 hydration appointment.  Once here they administered Zofran and decadron for anti-nausea, then the 2 hour dose of sodium chloride was started.  It's the big bag of fluid that Anne sometimes refers to as 'a lobster roll', or 'steak and potatoes'.  Gotta keep you're sense of humor.

She began to squirm and fuss in pain right after the infusion started, so I reported it.  Anne stated that the Ativan is the only thing that really helps.  This is when the RN explained that it's ok to use 2 of them.  We took another one (one was taken in the car on the way in), and soon the frown turned to a bit of a low stress smile.  Now she is in dreamland.  I pray she'll continue t improve this weekend, and have a good week ahead. 

Remember, on Friday she has another surgery (arthroscopic (sp??))scheduled to fix the incisional hernia.  She'll get thru it, but it's hard to look forward to the next 2 months with chemo happening every 2 weeks, perhaps making making her 'pay' for 4-5 days each time.  Doesn't seem fair that she 'pays the price' when she eats too.  This is the 'battle' everyone talks about, she knows it, and she's super strong and courageous.  Lord forbid she tries to take too much without complaining.  That's not one of her strengths.  I pray she speaks up every time she needs to.

I hear her snoring now, her face is relaxed, a good thing.

More later, all out love to you all.

Anne made it to the event at the town hall.  We couldn't stay till the end.  It was good fun for her to see everybody.  And, lots of folks worked hard to put on a great event.

It was a very tough night, and we'll be heading in for hydration treatment in about an hour now.  Anne isn't feeling well.

Pray for her strength and courage, and that she will begin to feel better soon now that the chemo is not running.  We'll write more later this morning.

2nd and 3rd day with the chemo pump

Even though they took great care of Anne at MCCM yesterday afternoon they couldn't help her on the way home. She began to feel sick during the ride. She did have an OK evening tho, and she enjoyed watching some TV.

Last night overnight was a better night for both of us. Me, I didn't wake up once. She did wake up sick tho and moved to the living room recliner in the middle of the night. She was sleeping there when I got up at 6am.

She woke up in pretty good shape today, looking good, and there was no stress in her face. She wasn't interested in eating very early, but when she got hungry I made what she wanted, a scrambler and a piece of toast. She enjoyed that but shortly thereafter she was miserable and was having dry heaves.  We called MCCM to let them know we wanted to come in right away for hydration. They said they had no seats available, but they could take us a few minutes earlier than our scheduled appointment at 11:40.

We got there at 11:15 and they took her right in. You know the routine, anti-nausea meds (Ativan) followed by a 2 hours of sodium chloride. She's resting now with eyes closed, good color and no stress in her face. That's good considering a few minutes ago her smile was completely upside down.  Before we finished she bacame pretty sick.  With that, these folks have scheduled appointments for her to get hydration at 10:30 on both Saturday and Sunday mornings.  We'll go to Maine Medical Center, the Gibson Pavillion for this.  Scarborough MCCM chemo room will be closed on the weekend.  Let's hope Anne feels wall enough going forward so she won't need to use either of these weekend appointments.  Would be nice to have a break from going in to town.

Anne and me were invited to a holiday function with her co-workers and friends at the Town Hall tonight at 6pm. It's a murder mystery dinner.  She really wants to go. Time will tell.  I'm betting she'll make an appearance for a little while.  She has her heart set on it.

Thanks to all of you for being there, for your continued prayers, and for keeping up with us.    We know you're there and it means so much.

Aside from all that, want to let you know we realize the blog can seem very impersonal, and sometimes a real hassle for those with a telephone or slow PC. It's a life saver for us tho, in terms of making the latest information available to all of you. If it is difficult for you to use, know that we're grateful that you continue to read. If you can, get your hands on a relatively new laptop and you should have no problems. For example, my Toshiba is 3 years old and when I open the blog all the pictures load in 5-10 seconds. I can then drag the scroll bar, and blast right past all the pictures to the latest post. I'm still trying to find a way to move the pictures down below the postings to make it easier for everyone to use, but it is not looking good.  I've updated to the latest version of IE and updated to the latest blogger interface, but still cannot do this.

First night with the chemo pump

Hi all,
It hasn't been easy getting re-acquainted with this chemo-therapy (poison) again. Anne didn't have much fun last evening or over night, up several times and ill. This morning she fought it as hard as she could, but was just miserable. Mid morning we called MCCM (Maine Center for Cancer Medicine) and they suggested we get in there for 1pm for hydration and anti-nausea meds. Anne is trying to 'put the fluids' to herself, but it's hard. This is like deja vu, it's coming back to me now, the sickness and need for hydration thru the IV port.

We headed into Scarboro, parked at MCCM and started walking in. Anne walked very very slowly clutching my sleeve and struggling. Then she grabbed me and we stopped before being rescued by a kind person who ran for a wheelchair.

They immediately got her situated in the chemo room and the anti-nausea meds, then the sodium choloride for hydration, were flowing. She quickly appeared ok, so I ran to the car to pick up this laptop. When I got back she was doubled over and ill.

They switched her over to some Ativan (lorazepam), a relaxer mixed with another anti-nausea med, and when that was done it was back to the hydration (sodium chloride). It will flow for 2 hours. They have been right there with her since she sat down in the chemo room, and very responsive to her needs.

This is so hard for her but she fights it with all she has. If she crys I know something is drastically wrong. She did and it scared me.

Now her eyes are closed, in fact she's asleep, and her color is back in her face.

They said that in 2 weeks when she comes back for her second treatment, they'll give her a booster of some 'super duper' anti-nausea stuff, along with the chemo. They say it will cover her for the 2 days of having the pump running at home. Let's hope so. Can you imagine having to use all these drugs and trying to get better.

From 2 years ago I remember rushing her to town, sick and needing hydration, over and over. Poor kid hasn't had much of anything to eat since Monday, trying yogurt and chicken/rice soup starting Wednesday, neither working out that well.

We hope for a better night tonight, and look forward to having the pump disconnected tomorrow.

The battle is under way.

PS. For curious minds, the chemo drugs being used are as follows: A mix of Oxaliplatin (aka Eloxatin) and Leucovorin (aka Citrovorum Factor) for 2 hours (at MCCM) once every 2 weeks, followed by 48 straight hours of Fluorouracil (aka 5-FU) using a portable chemo pump.

Back to Grand Central (chemo) Station

Hello all,

At 9am today we left home to return to Maine Center for Cancer Medicine, Sarborouth to start Anne's chemo treatments. It was a challenge to make the 9:45am appointment this morning. Anne was dragging a bit what with the past 2 days at Maine Med and all that she accomplished there, but we got to the parking lot here on time and got a handicapped parking slot in front of the door.

We learned we'll be having 2 hours of chemo while were here, and when we leave Anne will have a chemo pump attached and working for the next 48 hours. On Friday we return, just to have that disconnected. That'll be the routine every 2 weeks for the next 2 months. Then they'll evaluate the progress of the treatment by comparing a CT to the one taken on 10/20. If necessary, the treatments can then be altered or continued for up to 6 months.

When we first set down, they administered anti-nausea drugs, followed by steroids which facilitate the anti-nausea meds. Then the chemo was 'hung' and it will flow for 2 hours. We'll leave then with plumbing attached.

Anne didn't eat sunday night or Monday. Since Tuesday night she has been OK'd to eat soft things, chicken noodle soup, yogurt, cooked cereal, etc. With that she's had very little, but some, stomach pain after eating, nothing like it's been for the past 18 months. We're wondering just how long the bile duct had been clogged, regardless it is clear now and it's a good thing.