9/1 Visit to Cardiologist

We saw Dr. Sze yesterday as planned.

He explained that back on Aug 24 Anne had about 10 centimeters of fluid around the back of her heart, and now there are 7 centimeters. This means that the body has been absorbing the fluid naturally as we had hoped it would. Let's hope the trend continues. He doesn't need to see her again for 2 months.

Tomorrow we see the oncologist Dr. Ebrahim, and I think he'll be pleased when he sees Anne. I don't know what the next steps will be with him. Will let you know.

We were camping up at Pemaquid Point Campground last week and we went out to dinner one night at New Harbor. The parking lot for Shaw's Restaurant was hillside, from the road (Rt. 32) down to the restaurant at sea level. It was quite a steep hill such that it was a long drop out of the pick up truck if you were on the downhill side. That wasn't a problem.

Anyway, as we ascended the hill after dinner Anne fell behind the group. You know me, I didn't even notice her standing back there all alone. She had to stop and struggle to catch her breath, point being, she still cannot do things like walk up hills. It's because of the fluid that crowds her heart, lungs, and stomach. She has started to go back to Curves tho, starting slowly to try to work out once again.

Thanks for reading, and I'll keep you posted with any news about Anne. She is feeling and doing much better all the time, and happy with her curly hair.

Our best to all of you friends. Thanks for being there.

Anne is slowly improving, getting better now

Hello all,

This is to let you know that Anne is improving ever so slowly, day by day.

She still cannot take deep breaths, so cannot exercise or take walks yet, and, she has some digestion issues occasionally depending on what she eats. I can tell you that the red licorice was a very bad idea. I thought after she tried that that we'd be on the way back into the ER, but she weathered the storm and used pain medicine. There are some other foods that have a terrible affect on her intestines.

Anne has lost alot of weight, and she looks great.

She will see a Cardiologist on 9/1 and have another ekocardiogram done to look at the fluid near her heart. We hope the fluid will leach out of there and dissipate naturally throughout her body. Her Cardiologist will be Dr. Sze and he is very good.

We saw the surgeon (Dr. MacGillivray) yesterday, and he has released her. He felt she was doing well, just needing more time. Doug is an exceptional surgeon, but not someone you'd want to be stranded on a desert island with.

We have another appointment with the oncologist (Dr. Ebrahim) and we are glad for that. He is just fantastic and he ties everything all together for us. When we're with him it's as if he has nothing else to do except care for Anne, with no one else waiting in line to see him. He's a blessing as have been so many of the Drs., nurses, residents, technicians, and all who have cared for Anne this year.

Anne still has to avoid the humidity and take it pretty easy, but she feels like doing things now, and soon there will be no stopping her. Thank you all again and again for all of your cards, prayers, and well wishes. She knew you were there and thinking about her, and you helped her so very much by being there.

Discharged and Home Again

This morning Anne was discharged. She still has some labored breathing and shortness of breath if she over does it with physical activity.

Dr's did not want to do anything else to try and solve the problem. They think Anne needs much more time to recover from the esophagectomy.

Anne has some new anti-inflamatory meds to take too.

The majority of time in the hospital the past 5 days was used in taking xrays, ekocardiograms, etc, etc, and with various Doctors analyzing those test results and discussing those together. At the same time Anne was taking meds to reduce the amounts of fluid in her body.

Long Weekend In The Hospital

Anne will be in Maine Medical Center all weekend. She is being treated with diaretics and monitored. The diaretics are being used to try and reduce fluid around Anne's lungs and heart.

This morning Dr. Poulan came in and told Anne that he thinks these diaretics will work. All of the Drs working on this problem agree that there is fluid near the lungs and heart, but the amount of fluid doesn't alarm them. They do not want to do anything to invasive at this time.

We learned that Anne's diaphram is out of place, higher than it should be. It may be a result of the esophajectomy. It is keeping one of Anne's lungs from filling to capacity, thus the shortness of breath and chest pain.

Other than that there isn't much news to report. Let's hope and pray that this plan is going to help Anne feel better.

Thanks for reading.

Anne Hospitalized again

Yesterday we went to Maine Cardiology Associates for a scheduled appt for an EKO Cardiogram. This was a follow up to the one done 2-3 weeks ago which showed a small amount of fluid around Anne's heart. Drs weren't concerned with the amount of fluid found at that time, but scheduled this EKO Cardiogram so as to do a comparison.

A bit more fluid was found yesterday, and the Dr. (Dr. Z) (Sze) was concerned. He arranged for Anne to be admitted to Maine Med for additional testing which would determine whether a procedure would be necessary to remove fluid from around Annes heart or lungs.

Anne hasn't complained very much (I wish she WOULD complain more and sooner), but she has had chest pain and has been unable to exercise due to shortness of breath. She felt that she had pulled a muscle getting into the pickup last weekend, she was wrong. Now, this fluid is suspected to be causing the pain and shortness of breath.

If you remember, Anne has sufferred from both plural effusions (fluid near the lungs) and paracardial effusions (fluid near the heart). Now, several Drs are analyzing lots of numbers and test data, and they work as a team to share ideas and to agree on the best approach.

This morning Anne went to the 8th floor for a test where they inserted a catheter/wire thru the groin and pushed it up thru a vein near to her heart in order to check for pressure (from fluid), and determine how the heart was performing. This test did not 'hurt'.

Dr. Poulan completed this test and spoke with me and he said there was pressure around both sides of the heart. With that, he would recommend a procedure be scheduled asap to remove or displace the fluid from the area around the heart. It would be done via a small incision (a simple surgery). A 'window' would be made in there so fluid could escape from around the heart, and move to other areas of Anne's body where it can and should dissipate on it's own. Some of the fluid will be captured and sent away for testing, i.e. for pneumonia, bacteria, etc.. the fluid is said to be caused by inflamation from the surgery, i.e. just like any wound drains fluid.

At this point, the latest plan that the Drs have agreed to is to use a needle this afternoon, bedside, to remove fluid from the area near the left lung. They concur that this is the least invasive thing that will do Anne the most good at this time. They will observe her afterwards and this weekend to see how she does with that. If she worsens, there are other more invasive things that would be considered to solve the problem (alleviate the pain and eliminate the shortness of breath). At present, we wait for the bedside procedure to happen. The team of Drs are interested in doing this as soon as possible. Anne is resting comfortably.

Home Again !

On Thursday Anne was looking and feeling better. A pulmonary Dr came to evaluate Anne. He did some breathing tests. He didn't find anything of concern.

Anne came home late on Friday.

There was no pneumonia, and no concern for any fluid around Anne's heart or lungs.

Hospitalized once again !

Hello all readers,

Anne was hospitalized this morning.

This all started at 1am Tuesday (yesterday) morning. That's when she awoke with breathing difficulties at home. After a couple hours with no improvement we called the 'rescue' and I followed Anne into the ER. After ER found nothing they sent us home around 10am and we needed to try to catch up on our sleep.

We followed up with Dr. MacGillivray's office in the afternoon and he ordered a CT Scan. With that, we headed into Brighton Medical for the CT scan at approx 3pm. We understood that the CT would help rule out any blood clot problems in the chest area. Dr. MacGillivary left word that we were to stay at Brighton until he had a chance to call and speak with Anne directly, however he was still in surgery. At about 7pm he was still busy in surgery, so his office sent us a message saying that he wanted Anne to go to the ER. We headed to the ER and then Anne was admitted to the hospital from there by 1am.

The word on the CT scan is that there are problems in Annes chest. There are questions about a potential for pnemonia in her lungs, also fluid around her lungs, and also for fluid around her heart. It's now about 1pm and we don't have a plan of attack yet.

Dr. MacGillivray was here this morning and told Anne this was unusual for this recovery. He referred us to a cardiologist due to his concern about the fluid around the heart. The cardiologist was here and ordered an EKO Cardiogram, to get more information about the fluid around Anne's heart. We do not still have any results from that or a plan of attack as of yet.

Anne is resting, I would say less than comfortably, because she can only get small breaths. She isn't visibly complaining or visibly in trouble, but I know she would be much happier if she could take a deep breath. She's also be happier if we had a diagnosis and a plan. Before much longer we should know what might happen from here on.

The cardiologist just told me that if there is much fluid around the heart that they can go in with a needle to drain that. I asked him about the pneumonia and fluid around the lung linings. He said that there was nothing crucial regarding those concerns. He said his team of residents will be making their rounds shortly, and thay they hoped to have the results of the EKO cardiogram by then.

CANCER FREE !!!

Good morning friends,

We saw the surgeon (Dougald MacGillivray) and the oncologist (Kurt Ebrahim) late this week and we're so happy to let you all know, Anne is cancer free !!

Dr. Ebrahim gave us the news as he helped us interpret the pathology reports that came out following surgery. He explained that the tumor (removed) had been reduced by the treatments to 1.5cm.. He said there were 15 lymphnodes in the region near the tumor, only one of those contained cancer, and that six of those were surgically removed.

We're so grateful we were able to seek and find these specific doctors early on. Dr. Ebrahim gave us undivided attention all along and because of his manner we just had faith in him because we were so comfortable in his care. If you remember, he told us he would go after this cancer with 'curative intent', and that it would be painful and sickening. He sure was right about that. And the surgeon (man of few words) was as metticulous and thourough as advertised.

It's just amazing to think that the tumor was found on Dec. 22, and here we are six months later, cancer free, this considering the ordeals that so many folks go thru with cancer treatment. We feel so blessed. This was no walk in the park, but comparitively speaking, we are just soooo fortunate.

Anne is doing better all the time now, however she is having troubles eating and digesting many foods. She wakes up coughing and choking many nights. She has stopped doing the tube feedings overnight, and she eats pretty much as she pleases, just smaller portions. She is trying to build up some endurance and is tired most of the day.

She has a real hard time breathing when she wakes up in the morning. Dr. Ebrahim explained this. She has alot more anatomy in her chest cavity now, because her stomach is taking up some of the space in there along side her lungs, sharing that space. It's important for her to continue to do the breathing exercises to help with lung capacity, etc..

It's going to be a long slow recovery, up to six months before she is anywhere near back to normal. She gets tired easily, needs alot of rest, and she needs to do alot of walking exercise now.

I know you will all be happy to read this news, and we thank all of you for reading and praying as you have done. Anne really appreciates all of your support, and again, can't tell you how helpful for her to know there was an army of you friends out there thinking of her during the past 6 months. Thank you so very much.

Ninth Day at Home, cont'd

OK

The Dr. MacGillivary's resident doctors have been here, and they were pleased with the blood work, and therefore don't think Anne was dehydrated or under nourished. Even so, we'll stay here until the fluid bag is empty.

They don't know why Anne's blood pressure was low this morning however. They guess it was due to doing too much in the hot sun. Anne was only outside for 5-10 minutes tho, so I think Anne's sickness this morning is mysterious, and I do think she was dehydrated to some extent. Maybe not under nourished tho, because the blood tests would have indicated that.

They are going to send us home with a new script, for Reglan. It is something that will move matter thru Anne's intestines faster. This may alleviate the belly pain Anne has been feeling this past week.

The doctors have set our expectations a little lower going forward too. Here we were expecting Anne to be a bit better every day, and to start flying around soon. They told us that isn't completely out of line, but that Anne may take a couple of months to get better, and to fully expect a lousy day occasionally.

So,,, shortly we'll be out of here, and back on the way home once again. When Anne is allowed soft foods again they said we should avoid fruit for awhile. No more single servings of applesauce or pears. They also want us to increase the amount of tube feeding again, and we'll get specific directions on how much how fast. She was also advised to try increasing the angle of her sleeping incline, and to do more walking than she has been doing.

Thanks for reading all, and thank you for your prayers and well wishes for Anne.

PS The residents said that in six months Anne will be eating and drinking just about anything she wants, just like before. We weren't too sure what to expect with that, what with no esophagus and all. They said in six months Anne won't even know she had surgery. I hope they are right !!
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Ninth Day at Home, back to the ER, Fri 6/18, 3pm

Hello everybody,

It has been a tough week at home for Anne. She has had several things go wrong, and just hasn't been able to bounce back as she would have liked. Here's an abreviated list of things that have happened to Anne since she got home.

As it turned out, she wasn't able to tolerate any soft foods, so on Tuesday (or was it Weds?) she was put back on clear liquids only, and the rate on her tube feeding was reduced from 60 to 30. So, instead of having 3 cans of food via tube (in 12 hours overnight) she has only been getting 1 1/2 cans.

Anne had some periods of belly pain this week. She has had to grin and bear it, or sit on the toilet for some time to get rid of it.

She sleeps on the incline pretty well, but wakes up to a cough, which develops into vomitting which empties her stomach every morning (except for Weds and Fri). She has vomitted once, sometimes twice daily since coming home.

Anne's stomach incision developed and ooozed puss from a small hole between where 2 of the staples were removed(she may have pulled it apart when vomitting. That is now being dressed and watched daily. The 'wound lady' says it shouldn't develop into a problem (knock on wood). It's a very small hole, not deep, and looks good now.

Her neck incision, healing from the inside out, is dressed by a visiting nurse everyday, and looks good. With this tho, the skin on her neck around the incision is irritated and sore due to the tape being applied and removed every day. We opted to use 'montgomery straps' to hold the dressing in place the past 2 days which has been a blessing. With these, tape stays on, and doesn't have to be put on and pulled off each day. That was a great suggestion from a friend, and very helpful.

Anne's bowell movements have been soft or liquid since coming home.

Since coming home Anne has not been able to take a good deep breath due to what we think is a pulled muscle in her back, probably due to the vomitting. That is why we spent last Saturday night in the ER. We wonder if there isn't a broken rib in her back, but it didn't show on the chest xray done in the ER. She winces in pain when she tried a deep breath.

Her shoulder, which was sore from manuvering around in the hospital bed, is feeling better now.

She has had a sore throat from vomitting.

Did I mention that we are back in the ER right now????

Anne had 3 nurses scheduled to come to the house today, one for the neck dressing, one for PT, and one for O(occupational)T. When the 'wound lady' came at 8:45 Anne was doing well. Then, as Anne walked around in the yard (10am) with Amber (PT) Anne began feeling weak and sick. Anne's BP was 88 over 60, and her oxygen level was down to 89. We called Dr. MacGillivrays nurse Jenn on the phone (as we have each day this week) and we determined that Anne was probably dehydrated and possibly undernourished. Keep in mind, she has had reduced tube feeding overnight for the past 2-3 nights, and been reduced again to clear liquids only (popsicles, chicken stock, jello, and water) during the day for the past 2-3 days. She was initially told to sip the clears slowly so as not to cough/vommit, and today they said she should have been told to 'push' them so as to drink a gallon a day. Those specific orders weren't clearly given the other day.

So now we're in the ER being hydrated. Anne is sleeping with the IV running, and I look forward to her waking and feeling alot better shortly.

The concern is that she cannot seem to keep any nutrition down, and that she could not tollerate soft food. We need to get past that. The art of eating without an esophagus is something Anne hasn't mastered yet, but she will. We don't know whether she'll be released from here today, or possibly be admitted again. Anne will be disappointed if she is admitted again and I don't look forward to that news, however, we need to do the right thing to get this situation turned around so Anne can recover. She is in good hands. More later...thanks for reading and thanks for your prayers.

Fifth Day at Home, 6/14, 11:30am, (trip to ER on Sat.)

Hi Friends,

Anne was released on Thursday. It was a very long day with many many hospital associates needing to see Anne before she left. It seems like they came out of the woodwork, and that it would never end. Very tiring. Finally we got home late afternoon. By the time they let her go she was ready to 'climb the walls'.

It has been challenging and tiring at home, but we are starting to feel better in terms of having energy. For the first 2 days we were both glad to be here, but completely exhausted it seemed. Some sort of 'crash' from an adrenaline rush of the past 2 1/2 weeks I suppose.

Anne has had some difficulty eating etc.. She's using the feeding tube overnight along with eating regular soft foods during the day. The first 3 mornings Anne woke up coughing and vomitting so we thought we'd have to contact the surgeon today, however, this morning she was fine. Progress is being made.

We had to make a trip to the emergency room at 6pm Saturday. She was having stabbing back pains and back spasms. We thought she may have pulled a muscle while coughing in bed, and we told them so. They checked her for everything under the sun however, and then sent us home after mid-night thinking Anne had a pulled muscle. They needed to rule out numbers of other things. Many tests, including EKG, Chest xray, and Catscan were done. There was no fluid around Anne's lungs, and no blood clot (which was their primary concern). It was exhausting, and as a result we were both pretty much 'junk' all day Sunday. We were unable to attend church, and it was good that no one came by on Sunday. I'm not sure Anne would have attended church anyhow, she still has an awful lot going on in terms of recovery.

Nurses come to the house frequently. The first one (Laurel) got us going with using the feeding tube Thurdsday evening.

Anne's dressing on her neck wound is changed daily by one of a number of visiting nurses that have come here since Thursday. The wound looks good as it heals from the inside out.

A physical therapist (Amber) comes twice a week, and yesterday was very helpful in terms of Annes back spasms. She returns on Friday.

Anne isn't walking as much as she did in the hospital with the back spasms quite troublesome and painful. With these, she moves around slowly, but she is getting better day by day. She is keeping up with various exercises given to her by Amber.

Anne loves her new mattress and adjustable bed. It was fit right into our regular King bed, next to my mattress. It's working out well for her.

Anne wants to let you know she is getting better, however healing much more slowly than she expected.

Sixteenth Day after Surgery, 7pm

Hello everybody,

Anne is being released tomorrow.

The first result for the c.diff infection came back negative today.

Her feeding tube was removed in the morning, and Anne ate small amounts of soft solid food all day. The tube is hooked up again for this overnight. Evening use of the feeding tube may continue at home. If she tollerates enough calories with the solid food while she's here, the tube may not be needed at home. This is to be determined before we leave tomorrow.

The dressing on her neck incision was changed by the wound specialist here this morning to determine the level of nursing care she will need for that when she is at home. They are using a dressing that will last 24 hours, twice as long as what has been used to date.

A mixup in meds this morning left her in bed for alot of today. It was a double dose of pain meds when she asked for anxiety meds, at least she thinks she asked for anxiety meds. Whatever,,,,, no worries on Anne's part.

Anne has some stomach pain from diarreah. The doctors aren't overly concerned with this, in hopes that the solid foods will resolve this shortly.

Anne continues to take laps around the floor on foot, but this is the first day with no tubes attached, none !!!!!!!!!

Nurse Nancy taught Anne to make a sundae with vanilla ice cream, peanut butter, and graham crackers stirred up together. I guess that was pretty good, but Anne couldn't finish all of it.

She is now having an egg salad sandwich, at least half of one.

Let's hope for the best for this overnight and tomorrow.

Thank you so much everyone for bein there.

Fifteen Days after Surgery, 3pm

Hey you guys,

Anne is doing real well again today, but as you might expect, when she feels well she raises heck, so right now she is snoring away after a morning full of having too much fun. She's usually a very light sleeper, but right now she is sleeping soundly and noises aren't waking her up. She must've gotten overtired from talking too much this am..

Today regarding her eating/drinking, she has graduated from small amounts of water to unlimited amounts of clear liquids.

Since Anne had some diarrhea last night her room now is under quarantine. The nurses have to gown up, and I'm not allowed to use the kitchen at this time. You might remember this happening when she was in the Gibson wing in January. You don't want to have diarrhea in this hospital and be using an abundance of antibiotics. If so, they immediately take precautions against the infection known as C.diff. If Anne is here for three more days, they'll test her each day for C.diff until there are 3 negative tests. She isn't allowed to have a roomate till then either, so maybe it has it's benefits. They have told Anne that the tests alone are not cause for keeping her in the hospital longer than she needs to be here. If you remember back in January, Anne had gone thru this regiment of testing and there was no infection.

An abundance of antibiotics can actually be the cause of c.diff because that will not only kill off the bad germs but it kills off the good germs too.

So we wait for the doctors orders to come in this evening to see where Anne stands. Her Physical Therapist person here said she is ok to go home, but the doctors have the final say.

Fourteen Days after Surgery, 4:00pm

Hello Fans,

Well, we don't expect that Anne will be flying out of here today or tomorrow. Don't be alarmed, she is doing super good, and without any complications.

One of Dr. McGillivray's team came in an hour or so ago. He said orders will be placed soon requesting that Anne begin the process of drinking something light, followed by something heavier, then eat something light, followed by something heavier like ice cream, then eat something even heavier. Any one of these he warned may bother Anne's stomach, i.e. cause nausea, so they've already given some meds in anticipation of that. Her body will have to process that which she eats and drinks. Then home.

We don't know how long this process is going to take, and tho we tried we can't pin the doctors down to any timeline. We'll just do what we gotta do to get thru it, and do our best to enjoy the ride.

Fourteen Days after Surgery, 9:30am

Good morning friends,

Spoke with Anne earlier and she is doing great.

Her Barium swallow test, scheduled for 9am, should be happening right now.

She is encouraged that she'll be coming home soon, however we don't have any of those details yet. She must pass the test, and then we'll surely see the discharge nurse. Training will have to take place before she is discharged too, at least we expect so, i.e. how to mangage the feeding tube, and how to take care of the dressing on her neck incision. Visiting nurses will be coming to the house as needed too.

If (and when) she passes the swallow test we aren't sure whether she will then be asked to eat anything while in the hospital. Of course if she eats, then the food will need to pass by all 4 cheeks before they discharge her. I kinda think they will want to make sure all of that works before she comes home, but we'll see. They know best.

I am leaving for town again now, so thanks so much for all your prayers, cards, visits, flowers, gifts, etc. etc. etc.... Wish good things for Anne this day, thanks.......

Thirteen Days after Surgery, 8:45am

Mornin everyone,

Anne called me first thing this morning, she's doing really well today and sounds wonderful. She has already had the chest tube removed from her left side this morning, and she's 100% better again. She is looking forward to seeing any visitors today.

She likes having the plan in place in front of her which Nurse Brenda wrote on her daily log board yesterday. It has encouraged her so much !!

She can hardly wait for the 'barium swallow' test tomorrow.

She has been listening to some talking books which she's found to be very enjoyable. Thanks to all of you for your cards, flowers, visits, well wishes, and prayers.

We expect some discharge planning to be happening tomorrow, and not sure what after that.

Twelve Days after Surgery, 5:35pm

Hello all,

Today Anne is resting comfortably. She had her right chest (drainage) tube removed this morning (after being told it wouldn't happen) and she immediately felt much better, maybe 50% better.

She took a one lap walk around the 3rd floor today too.

Anne's breathing is better now with the tube 'gone' from the right side. Breathing is still restricted on her left side of her chest. She will be having a chest xray tonight, and with a good result the left chest tube will be removed tomorrow. The thought of that brings on a big smiley face.

If the other tube is removed tomorrow there will be another chest xray tomorrow night. Nurse Brenda just told me the chest xray is done at least 6 hours after removing a chest tube to check and make sure that lung is fully expanded as it should be. They can look at the other lung as well to determine if there is any more fluid in it.

The Barium Swallow test should happen on Monday morning. I'm thinking if Anne passes that test there will be some discharge planning and home training going on on Monday.

So we have a good plan for tonight, tomorrow and Monday and we hope and pray for smooth sailin' till then.

The dressing on Anne's neck incision is still being changed twice per day, and Anne is still using oxygen and pain medications on a schedule. She still does breathing exercises to expand lung capacity.

Anne is much better off now, comfortable, and I have a feeling she won't want to be in here any more that what's necessary from here on out. It's been a long time.

Anne said she wouldn't mind if friends wanted to come in to visit tomorrow.

Twelve Days after Surgery, 7:15am

Good mornin,

Anne had an up and down day yesterday, but she sounds great this morning. For the first time, her voice actually sounded normal again when she called at 7am today. I think there's some real healing going on in her throat now.

I just called Anne and she asks that you refrain from visiting today. She said she may be up for it later on today, but right now she isn't.

Yesterday, noonish, Anne coughed up some red (or pink) flem, and she got worried and decided she didn't want to take the Barium swallow test. She said she knew she would fail the test. She actually got pretty keyed up over it, causing discomfort and some real painful spasms in her back. Her doctors went with her idea to wait until Monday to do the test. This swallow test isn't a very pleasant thing to go thru. Anne said that the material they have you swallow tastes just awful.

During the afternoon she got calmed down and resting comfortably again. She then was taken down to Radiology for a chest xray to check on the fluid in her chest. We could see by looking at the drainage repositories that her right lung had not drained any fluid for the past day, however the left lung was still draining. Anne would love to get the tubes pulled. They are very uncomfortable. The doctors actually told us they would probably remove the right side tube today (Sat), but this morning they told Anne they would hold off till Sunday and hopefully remove both then. These tubes run in thru Anne's sides just down from her armpits. They run between the ribs and inside against the diaphram, causing pain.

Anne stated to me that it seems her bladder is finally waking up from the surgery. She is having to get up more frequently to exercise/empty it. She's going to start sitting in a chair again today, and will start moving and walking more. She has not been walking laps since the tubes were installed, but she is perking up to 'get moving' now.

Nurse Jenn explained to me yesterday that the kind of setbacks we've had seem huge to us, after all Anne had done so well for a week or so following the surgery, however for a recovery from a surgery of this magnitude, such 'bumps in the road' are common and to be expected, and we shouldn't be discourged.

The doctors were in changing her neck dressing when I called.

On Monday we expect to be talking with the discharge planning nurse again. She stopped in for a moment yesterday, just to touch base before going home for the weekend.

I hope I'm not repeating too many things in the blog the past few days. It seems like the news is repetitive, and to be honest all of the activities are sort of blending together for me lately. Not only that, but there are many many staff working on Anne's case, walking in and giving their thoughts and opinions all times of the day, and with that nothing seems to happen exactly as you are lead to believe. You know how selective hearing is........I'd also like to apologize if I am not able to keep up with any of your phone calls.

Have a good weekend all, and thanks for being there and for your continued support. Anne looks great, with rosey red cheeks, and is feeling much better minute by minute.

Eleven Days after Surgery, 10:30am

Hello friends,

I spoke with Anne this morning and she is doing ok. She awaits the Barium Swallow test scheduled for today. I hope she was a good girl and studied for it.

Anne's dressing on her neck had been freshened up early this morning. Last night it was changed promptly at 7pm. The wound is looking good, however worrysome as it is open and healing from inside out as you know.

Anne's breathing is improving ever so slowly. She has picked up again with the breathing exercises, and she is weening off of the oxygen now.

She isn't complaining about pain in the abdomen area at all, and that wound is looking especially good where the staples were removed and replaced with the steri-strips.

This morning Anne said she felt wiped out. I think it's related to the day she had on Wednesday. It hit me yesterday, and perhaps is catching up with her today.

Anne asks that you refrain from visiting today because rest is of key importance right now. Thanks for being there, for reading, praying, etc. Anne knows there is an Army of you folks concerned about her and it means the world to her. Thanks again.

Ten Days after Surgery, 8pm

Anne looks great tonight, with red cheeks again. She is getting up and down now when she needs to. It is painful and she's more out of breath, but it's improving steadily. She still has a hard time trying to breath deeply. It will be at least 3-5 days before she will be able to do that.

Anne had a nice day of rest today. She said she may have slept 5 hours today. Not straight thru of course.

Yesterday was such an extraordinary day that just about everyone paid the price being tired today.

Her right lung lining may be all finished draining fluid !! It looks like it hasn't drained any since 2pm. Her right lung liner has drained some since the last reading at 3pm. If one side stops draining, they can remove the tube on that side. Anne says they'll take an xray and make sure before removing any of the tubes.

The incision in Anne's neck is healing. The dressing is changed twice daily on schedule. It's a big gash there now since it had to be opened up because of the infection. Dr. McGillvary came in at 7pm while the dressing was being changed by Nurse Jenn. He put gloves on and stuck his finger right in there, which caused Anne some pain, and he did that to make sure there was nothing pooling or collecting in there. He said it looked very good, and the Nurse said it looked exactly as it should. I may have already mentioned that Anne said it may take a month for this incision to heal from the inside.

The nurses have said that it would be ok for me to bring Dixie in to see Anne. I would if Anne wanted me to, but I just haven't had time to even brush her lately and get her all shined up. Anne said she also needs her nails clipped. Maybe Dixie won't visit the hospital after all. I don't exactly need any extra trips to town and back anyway.

Anne has been coughing alot, like a good girl, to clear stuff from her throat.

Anne is supposed to have another Barrium swallow test tomorrow. I asked her to get studying so she can pass it this time.

Anne wants to thank you all for all of your prayers, positive thoughts, and cards.

Ten Days after Surgery, 11:00am

Just spoke with Anne and she is sounding much better.

She is dozing in and out so far today and I think that is the best thing for her. She has been able to get up and out of bed this day, so that is a very good thing. She is bouncing back again.

My plan is to visit later on this afternoon, and watch TV with her tonight.

We ask that you please refrain from visiting for the next day or so, and rest assured knowing that Anne is on the rebound, needing to rest today.

Thanks for being there and for your continued prayers. I pray that the road smooths out going forward from here.

Ten Days after Surgery, 9:00am

Good morning,

Anne made it thru the procedure. They took her to Radiology at 10:45 and brought her back at 12:45. Anne was in much pain with the drainage tubes installed. Yesterday afternoon was a very trying time for Anne, and all of us present, and of course all those working on her case. I knew it was trouble when Anne's nurse went to get help from the charge nurse, then the charge nurse went looking for help from the nearest resident doctor. At one point there were perhaps 6 to 7 support people in the room when the pain was at it's worse.

Anne was totally uncomfortable following the insertion of the drainage tubes. At maybe 4pm she was more comfortable, and resting, however not moving a muscle. Lots of medications were carefully used yesterday. A large amount of fluid drained out from around Anne's lung cavity very quickly as soon as the tubes were inserted. Her chest, lungs, etc., went thru alot of change in a short period of time. The tubes brougnt great pain for Anne for a few hours with her lungs able again to move up in her chest and fill with air. These tubes go between her ribs and rest up against her diaphram and it wasn't pleasant, there was much concern.

Around 7pm when we adjusted her bed for her by lowering her head just a bit it caused Anne's pain level to go back up to a 10, but with meds and time, she settled down again and began to rest within an hour or so. Keep in mind that during the afternoon doctors worked hard to get her pain level to come 'down' to a 10 according to Anne.

She is going to be OK. Her breathing is difficult at this time however, and she'll need to rest, work, breath, move as much as possible and have patience to get better. No one is discouraged, she'll inprove but she will be in the hospital for 3-5 more days.

She has spoken with me twice this morning and she is sounding good, just a bit discouraged with the news of staying there for 3-5 more days. It really doesn't matter, just as long as she continues to improve and the doctors are able to fix her up.

We hope and pray that these setbacks, which Anne has fought to overcome, will be the end of the bumps in the road.

Nine Days after Surgery, 9:30am

Good morning,

Anne called me at 5:30am today and she sounded 100 percent better than last night. I was glad to get that call.

I got in here at 7:30am and Anne is resting very comfortably now. I'm relieved at how well she is today compared to how nervous and agitated she was last night. She is in good spirits and talkative once again. She isn't worried about the procedure that will happen today.

They have started some morphine this mornin, I think for her neck pain or else just so that she relaxes before the procedure, and she still gets the Oxycodone for the stomach pain. By the way, the Dr. removed the staples (20) in Annes stomach this morning, and he applied some of those steri-strips (10).

They will be tending to her neck dressing twice a day, treating it with wet (saline) and dry gause. This mornin the doctor checked the newly opened incision and told us it is looking good. It will heal from the inside out now.

It is now 10am and we continue to wait to know when Anne will be taken downstairs to Radiology. That is where Anne will go to have tubes installed (today) to drain the fluid from the lining around her lungs. Once that is done she'll be even more comfortable because her breathing will finally be good, and she'll be able to start walking laps again.

Eight Days after Surgery, 11:30pm

Hello All,

Well, it would be an understatement to say that today could have gone better. Anne ran into some bumps in the road.

Anne was told that the next Barium Swallow test would be done Friday. She won't be able to think about eating, drinking, or going home till sometime after that.

Late this afternoon the surgeons team decided (what seemed suddenly) that they needed to open the incision in Anne's neck because they suspected infection around the incision. The way it sounded when this was explained to us earlier in the afternoon was that the bottom end of the incision would be tapped into and fluid would be allowed to drain. That was not the case. After I had gone for the day the surgeons came to Anne's room after supper time and let her know they were going to open the entire incision. This pretty much put Anne into a atate of shock. She totally didn't expect this, she was alone, and she was very nervous. She called me and said her body was shaking, so I came back in tonight however the job had already been done. Anne was still under the influence of the drugs from the procedure, and she was dreaming like crazy, halucinating, and talking about her dreams. She talked about how they stuck needles in her neck all up and down the incision before cutting her skin. Finally around 10pm Anne calmed down, and was resting comfortably. The incision will monitored closely and be treated so that it will heal from the inside. She is on increased anti-biotics now.

We also learned today that tomorrow Anne will be taken down to radioloty for another procedure. They need to insert tubing (I believe thru her back) and up against the lining of the lungs to drain the excess fluid that has been in there for the past few days. This fluid is the reason for Anne's breathing difficulties this past weekend. Anne isn't looking forward to this. I will be back in there first thing in the morning so I can be with her up until this procedure happens. As you can expect, Anne is anxious about this too.

Regarding the failed Barium Swallow test, the leak that was detected is expected to heal on it's own in due time.

As you can see, not alot of good news today. We look forward to these steps being completed, and that they make things easier for Anne so she can get better soon. As you can imagine, these procedures are not without risk, so please continue to keep Anne in your thoughts and prayers, and thank you for being there.

Eight Days after Surgery, 11:30am

Hi Friends,

Well, we have mixed reviews today. Anne is resting fairly comfortably, however, she is given oxygen which helps with her breathing. She still has the pulmonary effusions (excess fluid around the lungs) which is the culprit as far as Anne not being able to get deep breaths. She described it as feeling like a tight bungie cord around her chest, or a bra 3 sizes too small. Somewhat uncomfortable for her, so she does her best to relax thru it.

They swapped out her double IV pole for a single pole today. It was pretty entertaining to watch the nurses swap and move all the components with all the tubing from one pole to the other.

Anne's potasium is low, so they give that thru the IV, and at the same time they give Lasix (as a diaretic) to make her pee more to get rid of salt related fluid. It's kinda like shoveling 'you know what' against the tide, but she needs both going on at the moment.

Anne isn't generally as happy as she has been to date. She eagerly awaits a visit from the surgeon because she did not pass the 'barrium swallow test' this mornin and she wants answers as far as what that means. The test showed there is a leak in there where the surgery happened, and what we know about this so far is that it means no eating or drinking yet, nor going home yet. We'll know more about what the plan is shortly,,,, we hope.

They completed a chest catscan this morning to rule out any blood clot issues, and there is none of that. It was said that a potential cause for shortness of breath could be a blood clot that moves from the legs to the lungs. This was ruled out.

Anne is still doing the coughing and breathing exercises. She walked once today (so far) and at the moment is 'not on top of her game' so she doesn't feel like walking right now. She'll bounce back. A hospital stay can't be all fun and roses, right??

I sense she may be a bit discouraged this mornin with the recent developments, however she rests fairly comfortably with the oxygen, and she just needs to be patient as she waits for news and plans from the surgeon or others who know.

Patience is a virtue.........

Seven Days after Surgery, 1:40pm

Good Memorial Day to you all,

We took a day off from blogging yesterday, and it was a good day for that because there wasn't much news anyway.

Today Anne was moved out of the COR section into Room 302. This is a double room on the other side of the block. It has a view of the White Mountains and into Hadlock Field where the Seadogs are actually having a game with New Britain right now. It's another beautiful day, however unusual because the city of Portland (as well as much of the State of Maine) is covered with smoke from the wild fires in Quebec that have been in the news. We opened (and closed) Anne's window and could actually smell the smoke. Same phenomenon at home the past 2 days.

This morning Anne has a Chest-xray and an EKG done. No results were discussed with Anne yet.

She is walking 4 laps around the block 4 times per day now. She's up to 2/3 of a mile of walking daily.

Anne is experiencing shortness of breath, and I can tell it is not comfortable for her. The breathing exercises don't seem to be expanding her lung capacity as designed. An inhaler has been ordered and is on it's way to see if it will help. She asked Nurse Jamie if there was any medication available that would relax the muscles in her stomach and chest, to ease the sensation. The Dr. will be consulted.

Big news of the day, at 10:10 Anne passed gas for the first time. That's not only a milestone but a requirement for getting out of here. There's been nothing said about going home yet.

Anne stated that since the epidural has been removed that she has alog more pain when she coughs, makes sense, however she is still encouraged to freely cough.

Pat the respiratory therapist just arrived. She is going to give Anne a breathing nebulizer treatment rather than use an inhaler. Pat is listening to Anne's lungs as she breathes in on a device which generates a 'mist'. Anne will keep this up for 5 minutes. I hope it helps her out. Pat said the Chest-xray showed bilateral infusions of fluid on both sides of Anne's body. She said that sometimes they tap into that to relieve it, and sometimes they do nothing and let the body absorb it. The nebulizer treatment is done now, and aparently was not helpful for what is bothering Anne.

More to come........don't be alarmed, Anne is fine and resting pretty comfortably.
She needs to do more work with the breathing exercises than she has been doing.

Five Days after Surgery, 5:35pm

Happy Memorial Day Weekend everyone! It's another beautiful day here today, 75 degrees and sunny. Everyone seems to be a bit more relaxed in this wing of the hospital today with the long weekend upon us.

Anne is especially happy to have two fewer tubes !! Both the epidural and her drainage tube (which drained her stomach thru the nose) have been removed.

An Oxycodone cocktail (a large syringe full of red solution injected thru the j-tube(feeding tube)) was started today to make up for the epidural to manage pain. She can request this every three hours as needed. Anne said her pain has been at a 5 today.

When I arrived at 1:30pm Anne was taking a couple of laps around the loop so I joined her. The volume of her walking around the halls increases daily, and she still does the breathing exercises to increase lung capacity.

Anne is still in Room 326 in the COR section. She had a couple of rooms (with a view of Mt. Washington) picked out down the other end of the third floor, and she's been pulling some strings, but it's starting to look like she might just stay in Room 326 for the duration.

They now plan to do the Barium swallow test on Tuesday. The initial plan was for Friday, but due to the long weekend things have changed. The results of this test will determine 'what and when' Anne can start eating. The Dr. said this test is a test for leaks in Anne's reconstructed digestive system.

She is still being encouraged to cough alot to bring up congestion. She recently told the nurse she's getting pain from having to cough so much, so they'll try using a vibrating massage tool on her back near the lungs to try and help her loosen up some of the congestion.

Anne is also having some pain from gas pressure inside. She said she doesn't feel constipated, rather it feels like gas that is just starting to move. This will be a welcomed milestone.

We each took a nap between 3:45 and 5:15pm which was good because we were up so late last night watching the Celtics write their ticket to the NBA Finals. They have eliminated some great teams and we're pleased about that.

Anne wants to thank all of you very much for your continued prayers, cards, and visits. You have all helped her out so so much and she appreciates it.

Four Days after Surgery, 1:30pm

Good day readers,

Today is another day in Maine paradise weatherwise, 75 degrees, warm sea breeze, and full sun.

Anne had a good night and sounded great when we talked first thing today. She walked a long walk by herself early this morning, and she took a sponge bath by herself after lunchtime.

I came in around 11 and brought your cards in to her. others of your cards have been delivered directly here. It's early afternoon and she is off for a walk down the hall again. She just got back and says she took two laps around this time. I hope she doesn't sneak down the back stair and try to thumb home later today.

Dr. McGillvary made his way to Anne's room around 9pm last night (he deserves to get out early today!). He was still in his blue surgery outfit. He had been in surgery when we were concerned about the clogged feeding tube late afternoon, and even when I left around 7pm. Regarding the tube, he said 'we'll get it cleaned out, it'll be OK'. I suppose the chief surgeon at Maine Med has more to worry about than feeding tubes. Lo and behold, early this morning "two cute young residents" came to Anne's room and using a small syringe with solution they cleared the feeding tube. It seems various folks spent all yesterday afternoon using a big fat syringe to do the job. Anne said she then had a belgian waffle for breakfast, followed by some bacon and eggs.... :)

He told Anne that the pathology reports from surgery were all good. He said, regarding the surgery, that there was one lymphnode 'involved' and that he removed it along with 5 others nearby for good measure. He reitterated that the lining of the esophagus had a small tumor which came out with the job. We were told back in January that he was a fantastic and very thorough metticulous surgeon, as well as a man of few words, very serious. On Monday morning before surgery I made sure he went in to see Anne because she had told me she especially wanted to see him and ask him to smile at her before he started cutting. He got there to see her, and 'yes' he smiled.

Tomorrow Anne's epidural is going to be removed. Then she'll rely on the push button for her pain meds. Today they changed her antibiotics to Erythromycin. They checked against her list of bad drugs before using that and it seems to be OK for her.

Annes nurse today is Kristan, and she'll be working all weekend. We like her. Anne says her pain is stabalized at about a level 4.

Third Day after Surgery, 2:15pm

Hello all,

When Anne spoke with me at 7am today she was sitting in the recliner and watching the Today Show. She sounded fine. I should be clear and say that her voice is not working/sounding as usual, it's more or less of a squeek now, but they say it may come back to normal when swelling goes down.

I got in late morning today. It's another beautiful day here. The last 2 days have been 'dog days', hot, 90 degrees and sunny but with no thunderstorms. Today and tomorrow will be 75 degrees and full sun again with no thunderstorms in the forecast. Haven't seen a cloud in the sky all week. I was able to mow the lawn and brush the dog when I got home last night. The last couple days were 'dog days'.

Anne's daughter Erika has been here since Tuesday night, so that's been great for Anne to be able to see her. It helps me too because I can go home earlier than usual. I think it's been kind of a vacation of sorts for Erika too. Erika is working at her job from our house during the day and she comes in here after she quits work at 5pm. This has been good for Dixie too. Before Erika got here, Laurie and Dana came thru as usual to help by taking care of Dixie at supper time. Thanks to all of you guys for all of your help again this week.

Anne continues to focus on doing all of her breathing exercises, as well as taking several walks today. Her strength is clearly improving now by the minute. She is a good girl and a good patient. She seems to know what it takes to get better.

She is still in the COR area. Anne had told me last night that she'd be moving today, however no orders have been issued to move her yet. There are only 6 beds in this COR section and a couple are available, so there's no rush to move her out of here. We're told there are no empty rooms 'out on the floor', so it's unknown when Anne might move. It's a blessing tho because the care in here is especially good, also Anne has a very cold room which is to her liking.

Anne said she had a 'not so good' night with the blood pressure fluctuations. The epidural had been turned off to get her BP up, so she had to deal with increased pain. She had to push the manual 'dilotted' button more often to make up for the reduced amount of meds being pumped thru the epidural.

Right now there's a blockage in the feeding tube that has given the nurses a challenge this afternoon. I think they are going to get a new line, or they are waiting for an order from the residents to flush the existing line. Hopefully they don't have to take Anne anywhere for any procedures or anything.

Moments ago the discharge planning person (Kim) came by to get acquainted and start that process. There will be lots of discussion about how much help and equipment might be needed at home. We actually hope she won't need any equipment. We aren't sure how long the feeding tube will be needed, but if Anne is unable to get enough nourishment by eating when she goes home then feeding tube will be used to supplement that.

Anne is doing alot of light coughing. It's a good thing. Big coughing is also encouraged so that fluids/muccous are brought up. It's important for her to get up and move around and to lay on her sides (not just on her back) so that fluids don't pool up inside of her and stay in there for too long. The light suction tube is still installed in her nostril to help with the draining of Anne's stomach. All of this because her digestive anatomy has been reconfigured.

Nurse Jamie is working now to flush the feeding tube clear.

If any of you folks would like to see Anne she tells me that starting tomorrow that would be good.

Two Days after Surgery, 1:30pm

Hi All,
Anne continues doing well today. She looks very good and very tired.

Anne has not been moved out of the 'Continuous Observation Rooms' section yet however, and she asked me to let you know that she'd prefer not to have visitors at least until she has been moved out of the COR area. I guess at this point 'rest' is the most important thing for her. She expected to be moved today, but there's been no indication that that is going to happen. Nurse Carrie said that maybe the other areas are full, if so, Anne is in luck, able to stay in her private room for now.

This morning she got some exercise by walking about 100 feet, so she attained that goal.

Right now Nurse Carrie is removing Anne's catheter, so Anne will be getting up and down more often now to use the bathroom. That's not only a good sign, but one less tube. Yeah !! I believe she still has a drainage tube, a feeding tube, an oxygen tube, and a fluid tube (which occupies her 'port'). There is also an IV set up in her hand which is not being used at this time.

Today the bandage on Anne's abdomen was removed, exposing the incision there. That incision is 8 inches long running straight up and down ending 3/4 inch above the navel. I'd call it a doozy. It's loaded up with staples, perfectly placed and holding the skin together.

Carrie said the incision in Anne's neck is held together with glue. That incision has some redness but it's fine, it's just from some tape or something. Carrie checked it for us and said it felt and looked just fine.

Anne has been using chloraseptic since she complained about the sore throat yesterday. You should have seen the look on her face the first time she squirted it down her throat. It's an understatement to say that first sensation quite surprised her.

I asked Anne if she can swallow and she said 'no'. We'll learn how that's all going to work sooner than later. One thing's for sure, she'll need to adapt with the absense of the esophagus. I think that could be Anne's motto....'Adapt and move on'.

Yesterday I asked Dr. McGillvary how long Anne's esophagus was. He didn't exactly tell us but he did say that when you cut the top of it and then the bottom that it shrivels up to almost nothing. How's that for a visual?

Anne has fallen asleep again, hopefully the Nurses will be busy for a bit. Ops, well not exactly, she's up and walking again with Nurse Diane. Maybe I'll catch a power nap while they're gone.

Day One after Surgery, 4pm

Hi Friends,
I arrived to visit Anne today at around 2:30pm. Her adjustable bed was installed at home this morning. She's going to need to sleep with an incline now. There's no more flapper (check valve) in her throat, and gravity will be her ally from now on, helping her with the task of swallowing. I don't think she will actually swallow any more, I think the gravity will be the only thing that moves 'stuff' from her mouth to her stomach.

Anne has been sitting in a reclining chair since I got here. She just called the nurse to report that her throat is very sore and the nurse has gone for some numbing spray for that. Anne told her it hurts to swallow and her belly hurts to cough. Anne is dealing with congestion in her throat too. They have told her that light coughing is a very good activity for her, so she tries. She has a breathing mechanism/exercise to do which displays the strengh of her exhale. She is good about doing the exercises.

Anne said that she doesn't want any visitors until she is moved into another room off of this floor. She expects to be moved tomorrow. That's too bad because she has this nice private situation here now, with a nice view of both front doors of Maine Med just three stories down. It's shady out side her window now and I know she likes that. She had the fan blowing all morning when the hot sun was shinning brightly. Now the fan is turned off. It's in the 90's here today, hopefully a one day phenomenon.

Dr. McGillvary was in this afternoon and was happy to see Anne sitting up and looking well. I forgot to mention yesterday that he had told us that he checked Anne's liver during surgery and it looked fine. Today he repeated that Anne will have the drainage tube coming from the nostril for a week or so. At the end of this week they will do some sort of berillium test, to check Annes throat etc. for leaks.

Anne's blood pressure has come up today to where they aren't concerned now. It measured 104 over 70 last time, and they were pleased. The low bp earlier was attributed to her being dehydrated.

Anne has a feeding tube installed. Nurse Carrie just explained that it is a continuous feed going thru, so much per hour, and every four hours there is a flush of water that occurs. Anne said she heard the last flushing of water when it happened. The nurse said the amount of feed going thru is very small, designed to just give a bit of work to Annes's digestive system at this time. It looks like she's getting a coffee milk shake thru there at current, however slowly.

Anne is doing her best to keep from talking too much and to get as much rest as possible for now. She looks real good with color in her face, and she is a good patient, not trying to over do anything.

Looking back, yesterday was sort of a day of elation, with the good news out of the surgery, the relief from the news, and with Anne talking and joking some. Now reality is setting in as we realize she has alot of work and healing to do, with a long way to go. My feeling is that she's doing as well as can be expected. Learning to eat again is going to be a real adventure when that happens.

Day One after Surgery, 8am

Mornin all !!

I was up 21 hours yesterday, starting with the early trip to Maine Med, and ending with the late overtime Celtics playoff game late last night (I admit, I fell asleep in my chair during the 3rd quarter). I slept like a rock until Anne called me at 5:30am 'to talk'. Then she called me again at 6:15 and woke me again 'to talk'. Point being,,, she is doing fantastic and she sounds great, if not just a bit tired. There’s a lot of relief in her voice too. She said the nurses come in and wake her too much, and it's been hard to get a decent block of time for any real rest. Opps, she just called again and is sounding pretty tired at this point.

The one real concern is that her blood pressure is low. They're working to find out why. She is great tho, and I’m so surprised. When I left her last night and asked what she might need she said 'a T-bone'.

She mentions that she'll have the drainage tube in her nostril for one week. Now that's got to be anoying at times. Dr. McGillvary's assiatant surgeon was already in this morning early to check on Anne.

They have changed the morphine pump over to a 'dilotted' (hydromorphone) pump. I knew she didn't care much for the morphine but I know it served a good purpose for a while. The epidural is taking care of her stomach pretty well according to Anne, but it does hurt. I hope she is squeezing in a power nap now.

Hi to everyone and thanks for your continued good wishes, thoughts and prayers.

Day of Surgery, 4pm

YEAH !! The good news came at 12:30pm when Dr. McGillvary came to the waiting room looking for Anne's family. He took us aside into a private room and explained that he was extremely pleased with how the surgery went, and with how Anne was doing.

He stated the tumor was small and that he had removed it. He explained that he removed the 2 lymphnodes that previously had been detected with cancer, and all other lymphnodes in the general area anywhere near those. He said he completed the planned work of removing Anne's esophagus, some of the stomach, reconstructed and moved the stomach, and connected it to her throat. It took 5 hours to do so.

The surgeon explained that Anne may only have to eat thru a feeding tube while she is in the hospital, in other words, she may be eating somewhat normally when she get's to go home. I'm relieved with that news as I wasn't looking forward to that training class or the process. By the way, the insurance company has authorized 9 days in here, but I don't think Anne will stay 'in' that long.

Paul, the excellent facilitator of the waiting room informed us that Anne wouldn't actually be going to ICU from Recovery as we expected. Rather, she'll be going directly from the Recovery area to the Richard's wing room 326.

About an hour after talking with Dr. McGillvary in the waiting area we were allowed to go in and see Anne in the recovery area. Anne had her eyes open and felt well enough to talk and try to crack some 'funnies', as usual. Don't get me wrong, she was extremely drugged and groggy, but using her thumb and index finger she grabbed a couple short hairs on top of her head before anouncing to the nurse that she'd like her to 'pull her puppet string' to raise her head a little bit. I just tried to encourage her, and let her know how well she did, how well Dr. McGillvary had done, and let her know that she was 'all fixed'.

Anne was moved up to the Richard's wing room 326 around 4pm. This is one of a number of COR rooms here (continual observation room). She'll be closely monitored here until she is moved again.

At this point, 6pm, Anne isn't having alot to say. She is trying to rest, and the nurses are just trying to make Anne more comfortable. Anne has alot of pain in one side of her neck where there is a large incision. For this pain she can push a morphine button every 10 minutes in order to get 2mgs pumped in. There is another large incision across her stomach. Anne has an epidural form of anesthesia in place which is there to take care of her lower torso including the stomach area. I think that is pumped into here lower back, but I don't know how long she'll have that installed. She hasn't complained about her stomach yet.

All in all, we're just so pleased with how the day went, how Anne is doing, and especially with the comments made by Dr. McGillvary. He gave us the report we had hoped for. The cancer 'mind game' is over now and I can tell that Anne is very much relieved. She can now focus solely on getting better.

Thanks to all again and again for your well wishes, thoughts, cards, and prayers.

Day of Surgery, 11am

We arose today at 4:30am which enabled us to get to Maine Medical Center ASU at 6.

Anne slept well overnight and was very relaxed and ready this morning.

By 7:15am I was saying good-bye to Anne as the doctors took her into another room for anesthesia. She was ready. She is expected to be in the OR for up to 6 hours, and in recovery for up to 5-6 hours as well. I may get in to see her during recovery for 5 minutes or so, but that's it.

It will be a long day of waiting, but I am encouraged (now 11am) since 'no news is good news' at this point in time. Wouldn't want the surgeon to give up early, so I'm relieved to know Dr. McGillvary is still in there doing his job, taking care of Anne.

We look forward to some good news today around 1pm.

Thanks for reading, praying, etc. Anne is comforted to know that you are all concerned for her, and (again) knowing there's an army of folks praying for her is very good medicine. It really helps. Thank you for being there.

More to come...........

Surgery Rescheduled

Hi All,

Thank you all for you continued love.

My surgery has been pushed back 1 day (yeah!). The doctor has another major surgery to do and didn't want to do 2 in one day. So now my surgery will be May 24th at 7:30am.

My oncologist has given me the name of an individual who has had the same surgery. She is willing the talk with me and answer all my questions about the surgery. I hope she likes talking because I have at least 100 questions.

For a good laugh my hair continues to grow in every direction. It reminds me of those babies with the wild hair. Mine is very thin, very grey and very wild. It makes me smile when I walk past a mirror. I got a sunburn on my scalp, that's a first for me.

God Bless you all and have a wonderful day!

Surgery is Planned

Hi all,

Thank you for all your continued support, positive thoughts, prayers, calls, notes and cards.

My surgery has been planned for May 25th. The surgeon will be removing my esophagus and 1/3 of my stomach. He will then reshape the remaining stomach move it up thru my chest and attach it to my throat. I will be in the hospital for 9 days. I'm not sure on the length of time for recovery. I'll be having a feeding tube place during surgery and I don't know how long it will be there.

This waiting period is called my healing period. The doctor said the time was needed to heal my inside from the radiation. He explained to us that the radiation made my tissues like raw hamburg and the surgeon can't operate under those conditions.

I've been exercising daily to get my strength back. But I still seem to get tired easily, nothing a little rest or nap can't take care of. I find the pain in my stomach is getting better needing less pain medicine. My hair is growing, it's about 1/2 inch long now. I was hoping it would come back in curly but it is straight as a board. Just call me spike!

3/31/10, Endoscopy

Hi all this is Anne. I'm working on my first posting. I wanted to give you good news.

Dr. Millspaugh did a follow-up endoscope yesterday. He viewed the esophagus and stomach only. He could not view the infected nodes.

Findings: There was a smooth circumferential, superficial unceration in the distal esophasgus, extending from 29 cm to 31 cm. The gstroesophageal juntion apeared to be located at 31 cm. There was a cm hiatial hernia present extending from 31-35cm. The remainder of the stomach and duodenum were normal. Biopsies were taken within the ulcerated segment of the the distal esophagus.

Bottom line: tumor no longer appearing in the esophagus!!!

Impressions: Smooth, circumferential, ulceration in the distal 2 cm of the esphagus, Likely radiation injury. Biopsies taken to rule out neoplasm.

Dr. Millspaugh wished me luck with my upcoming surgery.

We take the these results to our visit with the surgereon Dr. McGillvary next Wednesday for more interpretation.

Praise the Lord and thank you for all of you prayers, positive thoughts.

Sunday March 21, 2001

Last week we got good reports regarding Anne's blood counts, yeah !!!

Anne has been sleeping and resting an awful lot since she finished her treatments. It's real important, and she definately needs it because she still feels really worn out most of the time. She sleeps morning, afternoon, evening, and overnight. As of late tho I've noticed her trying to do more and more things around the house.

This morning Anne was a little worried and emotional so we decided to take a ride in the car with Dixie. We took off for the White Mountains and went over to Rumney N.H. to see if we could visit my Aunt and Uncle at Stinson Lake. We weren't sure anyone would be home today because they winter in Florida. Well, they were not home, and I'm sure we were the first ones there this Spring. We walked the property and spent time enjoying the wonder of sitting there in the sun. It's just a beautiful place, especially when no one else is around. It was 48 degrees, much cooler than home. The ice was out about 10 feet on the lake, then frozen solid all the way across. We didn't see a sole anywhere around the lake the whole time we were there. It was neat!! The only other life was 2 creatures, otter or beaver(?), in the distance showing themselves three quarters of the way across the cove, coming out onto the ice from their holes a couple of times, perhaps to see about the noise we made. I've never been there on a day like today, so quiet. It's a good size lake, however so abandoned and serene on this day. Anne and Dixie really enjoyed it. We wrote a note for our relatives, and slid it through the crack under the porch door.

Last Thursday we had to head into Brighton Medical to have an ultrasound done on Anne's right leg. She had pain, checked with Dr. Ebrahim, and he ordered this to determine whether maybe a blood clot was causing the pain. There was no clot and we just went home. Anne's leg is feeling better day by day.

This week on Wednesday the 24th Anne has an appointment in the morning for a cat scan, at Scarborough. Then on the 31st we have an appointment to have another endoscope with Dr. Milspaugh in Portland, the same Dr who did this for Anne on New Year's Eve. On April 7th we'll see the surgeon in Portland, Dr. McGillvary, for the first time since the first week of January I think. We'll review with him these tests and images. We look forward to having Dr. McGillvary schedule Anne's surgery for later in April.

On April 9th we have an appointment scheduled with Dr. Ebrahim. Anne will remain in his care even after he 'hands off' to the surgeon to do his work.

Please keep Anne in your prayers such that this plan will proceed on schedule, and pray for her strangth, peace, and courage. She still has so much work ahead of her, and it really is alot for her to wait for and to think about. Thank you so very much friends!!! We love you and appreciate you and you're prayers.

Day 56, Weds., 12:30pm

We're home !

Anne was released by Dr. Ebrahim today. Her blood counts were not ideal, but Anne was dressed and ready to go, and he allowed it.

We'll check the blood counts next week on Monday in Scarborough. Anne was instructed not to get into any close contact with the public at this time. In the meantime we'll continue to check Anne's temperature, and report anything unusual to the doctor because her immune system is weak at this time. We're thinking it will be ok to do things like walking on the beach.

When we got home we made calls to Anne's PCP to check into her medical records because Anne is alergic to 90% of the known pill-form anti-biotics, and we want to know what has been used safely in her past. We found that she used Augmentin and Erythromycin in 1997 without incident. Anne is alergic to Penecillin, Tegratol, anything that ends in 'quin' i.e. Leviquin, and any sulfers/sulfates.

To all readers, your thoughts and prayers are so much appreciated. Thank you again for that and for your cards and calls too.

We'll continue to pray that the treatments were successful such that when we see the surgeon in a month or so that he will see what he wants to see, and be eager to do the rest of the work necessary to finish the job in this war on cancer.

Day 55, Tuesday, 4:20pm

Dr. Ebrahim had decided to keep Anne here at least one more night. Her count of Neutrophils wasn't as high as he would like. He explained the white blood cells help prevent infection, and the neutrophils in the blood help prevent bacterial infection. He said now that these counts are rising, nothing will stop them. He will keep Anne on the anti-biotics, and he expects to send Anne home tomorrow. He'll be back in the morning tomorrow.

That's when we'll talk more about the 'rest' period. He said in 4-6 weeks we'll have a Catscan and a scope to check on the tumor and lymphnode where the cancer was last seen. Then he'll arrange meetings where we'll meet with the surgeon (Dr. Doug McGillvary). Anne will work to get in better shape during and after resting so she'll be better fit and able to recover from surgery.

He said they wait the 3-4 weeks to do the Catscan and scope because if done now it would actually 'look like raw meat in there'. Hence, the reason for the nausea and pain meds. He said in a couple of weeks that Anne would feel alot better than she does now.

Anne just got herself cleaned up, and she's exhausted, not from the laps we took around the floor, but from getting cleaned up. She has alot of work ahead of her to lick this disease, but there's no doubt that she is better now, and that she is going to succeed.

Day 55, Tuesday, 2:50pm

Celebration day !!

It's for Anne who has completed her cancer treatments !! Yes, she had R/T here at Maine Med today, and that's all there is. I hope I'm not jinxing her because we haven't actually seen Dr. Ebrahim yet today, but as far as we know there's no more C/T or R/T.

We just learned that Anne's white blood count is 1900 today. That is up from 1100. We're told a decent low number would be 4000. Regarding the immune system tho, I have learned there is at least one other factor (and probably others). It's the count of neutropils in the blood. We don't have that number for today. Depending on that as well as the white blood count, the Dr. will decide if it's ok for Anne to go home, whether she can have any company, go out in public, under what conditions, etc, etc...

I think she'll be dissappointed if she has to spend another night here. She's been feeling good since last night, considering that she has pain and nausea all the time. I've seen her ask for pain and nausea meds twice today but never complain about either one. She's a strong girl, sometimes a little strong for her own good as we've discussed. However, we definately don't want to go home to soon and risk having to be admitted again any time soon.

Dr. Ebrahim is on the floor now so we'll see him pretty soon. What happens next is up to him. Anne wants to ask him what he thinks about the disruption in her R/T schedule. I want to ask him about the impending 'rest' period, how long it might be before we'll want to see the surgeon, when we might have another scope done to check on the tumor that was found in December, etc...

I beat Anne at cribbage today and yesterday. Only one game each day tho. If we had played best of 5 she would have cleaned my clock as usual.

Day 54, Monday, 7:40pm

Anne had R/T here today at around 3:30pm. They interrupted our cribbage game for that.

She has been feeling better. Her blood pressure is up and down, and we don't know about the blood counts until tomorrow mid-morning. Today her white blood count was up slightly, but no where near where it needs to be for her immune system to be sufficient. Because of that, whenever she leaves her room she needs to wear a mask.

Anne is feeling herself tonight, and so we hope the white blood count is up tomorrow.

Anne will have her last R/T tomorrow wither here or in Scarboro. Both computers are set up for her now.

Day 54, Monday, 10:25am

Hello friends,

I hope you enjoyed a good weekend. Anne has had a long one. She feels as though she doesn't want to be here, but her blood counts are still low, i.e. she still has neutropenia, still highly suseptible to infections, etc... this is critical because such infections can become life threatening for a cancer patient with this condition. Even with this going on, we still hope to get Anne's final 2 R/T's done, one today and one tomorrow if there is any way possible. All we can do is wait for the anti-biotics to kick in, clear up any infection, and cause the white blood count to rise. I read where this condition is chemo induced, and Neutropenia usually shows up up to 7 days after chemo is finished. In Anne's case it took longer.

I don't think I mentioned that Anne has been constipated. This started last Thursday and ran through today. Her tummy was aching when I left and went home last night around 8:30, and the poor girl was super miserable this morning when I called in here early. She is better now, and finally getting thru that, but she has had 'that' feeling mounting all weekend too. I believe they started to give her the softeners on Saturday.

Dr. Ebrahim beat me in here this morning (he was in at 7am, me at 8:30), so I don't know exactly where we stand as far as blood counts, plans for R/T, going home, or any of that. Anne doesn't know whether he will visit her again today or not. It's 'hurry up and wait' time.

Glad Anne is feeling better now since the constipation is clearing up. The nurse just told me that Anne is going to have R/T here today, and that the Dr. mentioned that she may go home today, but that he is gone now and did not leave any orders for her to be released. Think positive!!

Day 52, Saturday, noon

Anne called me at home around 8am, and she was sounding better. I was fixing to get chores done, pets etc., and head back into Maine Med. She asked for her cleanin stuff, some clothing, and a bagel. Did you notice she didn't ask for her toothbrush, we'll neither did I, oh well....

Too bad I didn't bring the cribbage board in today....

Anne is being given 2 anti-biotics today, Vancomycin and Aztreonam. She actually wants to come home (doesn't want to be here), but she can't because her white count is only up to 1100. It is rising, but...... The on-call oncologist today is Dr. Dugan. He says best case Anne could be released tomorrow (Sunday), and maybe Monday. Anne is discouraged with this news having to hang here for awhile, but we'll just try and make the best ot this day day that we can.

Dr. Dugan also informed us that Anne may have a urinary or bladder infection. We just need to treat with anti-biotics and wait for blood counts to come up.

It's a beautiful day today. Looking and thinking back, we've been blessed to have had zero ice and snow storms during late Jan, Feb and March so far (knock on wood) considering all the driving we have had to do so far this year. I too am looking forward to the rest period that lies ahead before surgery.

I want to thank and recognize Laurie, Adam, and Dana for helping so much with Dixie and Beasley while I've been spending so much time with Anne in Portland these days. It helps so much to know that these guys will work together to help us out. Takes a load off of our minds to know they are there. Thanks you guys, and we love you very much.

Day 51, Friday, 9pm

Ready for this ?

At 3pm I was trying to convince that we should be out taking a walk. She was wiped out however and not up to it. I put Dixie's leash on and Anne was considering going with us after all.

But wait,,,,,,,
About 3:30 now Anne began to shiver, and couldn't stop. She asked me for pain and nausea meds. At about 4pm I asked Anne to call the CMMC emergency number and she did. They advised that we take Anne's temperature, and it was 101.2. The emergency folks said it was critical, could be an infection, and we must rush into Emergency at Maine Medical. The girl on the phone (Tammy) would let the on-call oncology doctor (Dr. Devon Evans) know. She also said that Anne would probably be admitted to the Gibson Pavillion. Anne was able to get up and move around just fine, so we didn't need the ambulance this time.

At 5:30 we were being admitted to a room in the new Emergency area at Maine Medical. At 7:30 they took blood and told us it could be tested in a half hour. they told us how important it is for Anne to get some anti-biotics, but they didn't know what kind to use since Anne has so many alergys.

At 9:30 the supervisor of ER doctors came to our room and told us Anne's white blood count was low, that it was 800 and it should be 10,000, and that her immune system was compromized. He said this is when we don't even think, rather we just give anti-biotics thru the IV. That's when I lost it. I blew up because had been being told startin starting at 4pm about the possible infection, and the need for anti-biotics, and none were forth coming. This is when this supervisor (Tamas) turned the case over to the oncology Dr on-call to determine which anti-biotic would be safe to give to Anne. Dr. Evans was on his way in from home to do this, and to admit Anne to the Gibson Pavillion (cancer wing) once again. Soon Dr Evans was with us and he quickly prescribed Vancomycin. He said the condition with the low white blood count is called a "neutropenic" condition. It's scary because Anne's body cannot defend itself right now. I asked if he thought Anne would be able to have her final 2 R/T's on Monday and Tuesday and he said 'yes'. He is a good doctor, I can tell. All of the oncology staff here has always been fantastic.

Shortly Anne was feeling somewhat better and she was taken to room 565 at Gibson. I headed home after midnight.

Day 51, Friday, Noon

Tough morning today for Anne!

At 3:00am she woke me asking for pain and nausea meds, and the bucket. She was coughing and did so for a miserable half hour, spitting clear stuff and finally ending with some yellow stuff. Anyway, at 3:45am after some tending I was able to calm Anne down and we fell back asleep.

After Anne finished R/T this morning we explained what had happened to a nurse who said it wasn't out of the ordinary. She said the yellow was probably the end of the spitting up, and we said "yes". She said is a sign that the stomach was approaching empty. OK, makes sense I guess.

We took Dixie girl (our dog) with us into R/T this morning. Plan was to go to Pine Point and run on the beach after R/T. We did that. Anne did quite a bit of walking this morning, it was low tide and the walking was good. We picked up 2 sand dollars. It was a beautiful, sunny, cold, windy day on the ocean. Almost too windy so we didn't stay too long. The weather man had said today would "look" like a nice day, and tomorrow will "be" a nice day, so we look forward to less wind and more warmth tomorrow.

Anne was exhausted when we got home, but she put together a casserole, felt quite accomplished, and we had a good lunch.

Day 49, Wednesday, 7:30p

Evenin friends,
Just 4 more radiation treatments. Our appts are at 8am and we are out of there at 8:30. Anne is doing so much better each day with the chemo going away. Where does it go? Does it just wear out? Is that what I smell? HA!

Anne walked the yard with Dixie yesterday.

Today she felt like going down to Higgins beach after R/T to watch the surfers, so we grabbed a Mister Bagel and headed over there. The tide had just turned in when we arrived so the waves were building and there was action. Dogs were running on the low tide beach and owners enjoying their walks too. Just 5 surfers.

Although Anne is alot better, just a trip into the grocery store wears her out, she continues to use pain meds for her esophagus, and she's still using plenty of nausea meds too. She is having more and more trouble eating. I imagine the radiation is tearing up her insides. The mouth sores are starting to clear up now.

Her hair is coming back fuzzy. She's into Gatorade now, with water suddenly getting very old. She's had a ton of it.

It feels to me like we're seeing clearer and clearer now, maybe like coming out of a black cloud, with the tunnel vision opening up wider and wider every day. Things are looking up. Tomorrow I'll try and get Anne out of the car and onto the beach to walk, and the next day maybe Dixie can come with us to run. Anne loves watching dogs at play.

Day 47, Monday, 01:30pm

We are home from R/T in Scarborough this morning. Only six more treatments. All is well, it's just that Anne was so tired today that I moved her from place to place in a wheelchair. The radiation doctor encouraged Anne to start walking more and more, to force herself to do so even thought her legs are tired and lazy, no matter how hard it seems, and that it will get easier once she pushes herself. We should finish R/T next Tuesday, then rest, then surgery. Did I mention that Dr Ebrahim had told us that the Esophgectomy surgery is harder than the cancer treatments. UGH...

Soon, we'll see the surgeon again, Dr. Doug McGillvary. First tho, Anne has 6 weeks of rest coming to her. The blog may get boring for awhile, assuming it hasn't been so all along.

This morning in the car I asked Anne to write todays blog. She told me her fingers were too tired to type. I didn't buy that excuse, but she is snoring away right now. Little does she know, I know exactly (well maybe not exactly) how she feels. One thing is fur sure, she needs some serious rest combined with exercise the next 6 weeks to be ready to recover from the surgery that awaits her. Dr. McGillvary and all concerned will appreciate that, so I'll be pushing her.

Thank you for reading everybody, and thanks for your prayers. They help !! Anne appreciates all of your cards and kind well wishes. Back to Scarborough tomorrow, and on we go.

Day 46, Sunday

We're home !!

Today Anne called me before 8am and was doing well, and she said the Dr wanted to see me. When I arrived in Maine Med at 9:30 and Anne was sitting at her window table working on finishing a breakfast sandwich she had made for herself from the breakfast things that came from room service. I brought my breakfast in, so I joined her.

After awhile, she said to me 'Please get me my stuff'. I had had her clothes ready and in a grocery bag in her closet. She wanted to change. When she went into the bathroom I went and told the Nurse Melissa that Anne was getting dressed. She said "OK, I'll tell the Dr she wants to go."

Before long we had spoken with Dr Ebrahim. He said her blood counts were good, she needs to drink as much as she can, and not to order pizza tonight. She still has severe mouth sores Dr Ebrahim has given her a soft diet. We were on the way home before noon. Anne had a good afternoon, lots of sleep, all of the hockey game except for the napping, and a good nights sleep. She only got up once for natures call.

Monday morning we are heading to Scarborough for R/T at 9:30am. She has 7 more R/T appointments, then her treatments will be done. She is going to make it thru her treatments !!

Day 45, Saturday, 4:45pm

A good day. Anne had breakfast and was fine afterwards. She had lunch and did OK. And she has been up walking twice. Each time she took a lap around the Gibson floor which is 1/14 of a mile each time.

She's been sitting in a chair at her window today, which is a first, so she is just feeling better.

Anne requested pain medication twice today, and nausea medication three times. The pain in the esophagus is always present, and she only asks for pain meds when it is bad. She has been having some hickups today which she is very uncomfortable with.

Day 44, Friday, 8:05pm

The hydration was just what the Dr. ordered. She really needed that, and she perked up right away and she looks and feels good.

At 7pm we had some dinner and Anne had asked for nausea meds ahead of time. She got some of the new Nytril about a half hour before eating. She ate a good supper and seems to be fine.

I'm thinking it was a mistake to take Anne off of the hydration last night, but hind sight is 20/20. We move on from here and hope for a good night tonight,and better day tomorrow.

Anne is like a different person tonight. No stress in her face.

Friends, thanks for reading, and for your prayers. I'm packing it in for another round trip. More tomorrow. Thanks again.

Day 44, Friday, 4:10pm

Dr Ebrahim came in around 4pm. He says to Anne, "you look the same". Anne says, "I don't feel good". He said "then you aren't goin anywhere, else you'll be calling me at 2am asking me how to get back in here". Anne didn't argue.

Since Anne has gotten a bad taste in her mouth for the Zorfram (which she used for several weeks now) he has replaced it with Kytril for nausea. He said it is in the Zorfram family, and is a 12 hour drug.

Anne asked for some pain med at 3:45 this afternoon because of pain in the esophagus. She got some hydromorphone delivered.

She explained to the Dr that she is very lifeless and tired, so he is going to restart the dydration which was discontinued last night. Another reason is that she has such a hard time drinking with the sores in her mouth. Hydration always has a good effect on Anne, so I look forward to her feeling better shortly. The Dr. would like to see her taking R/T again on Monday as an outpatient, meaning back in Scarborough at MCCM. That is a goal. Let's hope the hydration gives Anne some energy.

Anne asked for some real soda so she's having some sprite (which is a first), so that's another good sign.

I feel so bad for Anne. She is just filled with so much courage it's hard to imagine.

What a long strange trip it's been!

Day 44, Friday, 02:55pm

Hi all,

Well the house didn't float away overnight, but lots of roads were flooded and closed on the way home. I walked thru 3" rushing water on the driveway to get from there to the house last night. The house was becoming an island with much water in the front and side yards. Then early this morning the rain stopped and all the ditches drained into the river which very high, only 5' from the road. No water in the basement, and no leaks anywhere, so all is well.

Anne is having a better day today than yesterday. She called me at home early, and didn't need me to bring anything in. She had some breakfast and tollerated that pretty well, except for some nausea. She got some nausea meds mid morning, started feeling better, no vomitting, and she had a good nap.

Her mouth is very sore today, and she struggles to speak and eating is difficult. I can see the sores on her lips and toung now and it looks painful. Who knows how long that side effect will last, but probably until the chemo works it's way out of her system.

She felt good at lunchtime, had some late lunch, and she is having some nausea from that now, but she hasn't requested any meds for that yet. She says she's ok. She had another nice nap after lunch.

Dr. Ebrahim had been in before I got here this morning and Anne told him she wants to go home. He said he'd come back to see her this afternoon to discuss that. Anne has only been up for one walk, and that was this noontime. It concerns me that she isn't interested in trying to walk some more, but what do I know. She isn't saying much about how she feels because it hurts her to talk. Something interesting that Dr. Ebrahim said yesterday was that he believed it was the two half doses of chemo from last Thursday (Cysplatin) that made her sick on Monday and not that (5F-U) which was pumped in over the weekend.

Right now Anne is kinda resting with a touch of nausea, being quiet and doing pretty well. We're waiting to see what Dr. Ebrahim has to say. I feel that Anne is a bit discouraged today, and certainly tired of having to use so many drugs, and she's tired. I'd bet that she doesn't get to go home till hopefully tomorrow, if not then Sunday. We'll see, but for sure some fresh air will do her good.

We can see a team practicing lacrosse out on the astroturf at Fitzpatrick Stadium. It's a good sign of spring, but it's only February.

Day 43, Thursday, 5:45pm

This has been a pretty good afternoon for Anne with no real sickness or diareah.

We had lunch together. Anne orders from room service, and I go to the caf. Anne had some humus, a plain wrap, and some oatmeal. She tried some hot chocolate but never finished that. It was a good lunch which she seemed to tollerate pretty well. There was some nausea which was treated with meds, but no real sickness.

Mid afternoon Dr. Ebrahim came by. He is a good Doctor. He is setting it up so Anne can resume R/T on Monday. He said "the R/T is not being done to cure the problem, rather it's a pre-surgery step to improve the situation, so, it isn't so important that Anne's R/T program has become interrupted". He said he is 'on' all this weekend, so when Anne is ready to go home, he'll be here to release her. He said she needs to be eating, processing food, and walking.

The Dr is going to discontinue her hydration IV for the night to see if Anne can do will without that.

Anne is ready to get cleaned up this afternoon. She wants to take a shower by herself. When she is all set for this, Nurse Cheryl will assist and will remove her medi-port. It has been in for 7 days now, and it is time to replace the access mechanism to the port. All of this happened this afternoon. After her shower Anne had some nausea, and she has had some Ativan thru the IV for that. Now she is resting comfortably contemplating something to eat. She must order from room service before 6:30pm if she wants something tonight.

Anne is concerned about the water at our house, with all the heavy rain today, 4" to 6". I guess she thinks the house might float away, which it almost has a couple of times over the years. Maybe she'll kick me out of here early tonight. Adam went over to feed Dixie on his way home from work tonight. Anne has decided to just have a pnut butter and jelly sandwich tonight, nothing from room service. I can make that here on the floor. If she's a good girl I may trim the crust off of the bread for her.

Day 43, Thursday, Noon

I got here for 9am today, and Anne was a sight for sore eyes. She looked great and had good color in her face. She had ordered something to eat, and she was waiting to have breakfast with me. It looked like all she had was plain yogurt, a small banana muffin, and some cranberry juice. She was feeling good. We have a new roommate this morning. I told her I was bored with the bobsled racing in the Olympics, and she lets me know it involves skill, she likes it, and she likes all the events. She always has been a great race fan. She sees things I don't even notice when we go to the stock car races in the summer, she knows her stuff. She's having a good mornin.

Anne couldn't finish the cranberry juice because of the mouth sores and sore throat. She said it's not the ordinary sore throat, rather it is definately related to the chemo, and different. She swishes with two liquids every so often to help with this, but it appears that she is struggling more and more with this particular side effect, so I looked into it and read where it can very painful, even to where pain meds are needed just for that. We hope it won't get to that. Whatever develops, Anne will get by it. She is known for saying "this too shall pass".

At 11am a Reiki practitioner came by. I had requested this for Anne yesterday. She asks him to wait till her meds come.

At the same time Anne is having discomfort, pain in her chest, and is needing to use the bathroom. She requested pain medication from Nurse Jess who seems wonderful. Anne didn't vomit or have any diareah this time, progress(???). We've been tryin to time her nausea meds better so that she can tollerate what she eats, and maybe that strategy is working. It was Anne's idea.

At noon Anne is having a hard time keeping her eyes open. She wispers to me "one more week". I'm sure she is thinking about finishing the 7 more radiation treatments. I didn't have a chance to ask whether she enjoyed the Reiki session. She's was on the phone with Luke when I came back into the room! She's pretty tired, she reminds me to get some lunch, and she falls asleep.

I want to let Luke and Erika know that when they call it's like rolling dice. There's a chance it might be a strong moment, or a weak moment, and they shouldn't be discouraged if they happen to call at a weak moment. They could just as likely call when Anne is 'up' and have a great conversation with their Mom. As we have said, Anne is on a roller coaster this week.

It's 12:30pm, Anne is resting, and it looks like she'll sleep thru the lunch hour.