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.