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 !!