Friday 10/16/09

Also I wanted to add to the arrangements Salynn had outlined below that following the mass there will also be a gathering to celebrate Valerie’s life ,held at the Knights of Columbus Hall.

Love and Prayers for Val

Ryan

Thursday October 15, 09 2PM
The plans are made. Monday October 19, 09 there will be a burial service at 9 :00 AM for anyone who would like to attend to be held at Peasantview Cemetery in Morrisville, VT. A funeral mass will follow at 11:30 AM at St. Monica's church in Barre, VT.

For all those who would like to share a memory of Val with Dad, Rudy and Lea and all her family, please feel free to do so as a comment on the blog or on the on line newspaper for the Barre Times Argus will run her obituary as well as the local paper in Kennebunk.

Love and prayers to Val for eternal peace and rest....SAlynn

Thursday Oct. 15, 09
It is with peace and great sadness that I must say Val passed away at 2 AM this morning with Dad, Rudy and Lea, Alison, Fuller her dog and Diamond her cat at her bedside. In lieu of flowers, a donation in Memory of Valerie Trombley to either the Central Vermont Home Health and Hospice or The Humane Society of Central Vermont is preferred. The services are being planned as I write this. Tentatively, there will be a private, family burial of Val's ashes in Morrisville, VT followed by a funeral mass in Barre Vermont at St Monica's Church most likely on Monday Oct. 19, 09.

Love and Prayers of eternal rest to Val always...Salynn

The Humane Society of Central VT
Mekkelsen Hill Road
Barre, VT 05641
802-476-3811

Central Vermont
Home Health and Hospice
600 Granger Road
Barre, Vt 05661

802-223-1878

Wednesday Oct. 14, 09
At 8:30 this evening, my brother Baine called to report that Val's breathing changed has changed to raspy. Her oxygen dropped to 72% on the 6% oxygen. The VNA nurse came as requested by a phone call from one of my siblings or Dad. The nurse increased Val's oxygen to 7% and her oxygen saturation returned to 92%. The morphine drip was increased also and a patch of atropine was placed behind her ear. The nurse stated it would most likely be only hours. At her bedside is her parents Rudy and Lea, Dad, Alison my sister, and Baine with his wife Denise. Val looks peaceful with no visible signs of discomfort and is surrounded by those who love her. She is not alone as she leaves us to begin another journey.

Love and Prayers to Val always....Salynn

Tuesday Oct. 12, 09
Yesterday was an agitated day and today was a day of refusal. The morphine IV drip in in place and the end is nearing.....

According to Ryan, Val was so "fired up" yesterday trying to get out of the house, banging on her window, and trying to get out of bed by herself once ( she is too weak to do so, but she was trying) that today she was "spent" and a bit more peaceful.

At 3 am this morning, Val was awake talking about a white bag. Dad finally figured out she wanted to feel and touch Fuller's dog food. As she gets closer to going to her new home, the comfort of thinking of her animals has been a common thread in her attempts at conversation. During the day today, she told her mother Lea that she had a new puppy named Fluff. What joy that thought must be for Val to think she has a new puppy!! The animals which bring such joy to Val's life have been an active part of her mind.

This morning started by Val biting Dad's finger and refusing the Ativan pill. The VNA nurse Mary came twice today to switch Val to a morphine drip (IV) through her chemo port. Val is now taking the Ativan orally by syringe as she used to take the morphine. No more pills! Boy that has been Val's feeling since day one of her cancer battle, and she finally is getting her wish. Dad will supplement the IV drip by oral syringe tonight as needed if Val is uncomfortable.

Dad is the best he could be under these circumstances. He is exhausted emotionally, physically and psychologically. He knew he couldn't let hospice in his house more than they already were. But he has finally said "I can't do this alone" and has allowed his children and Val's four stepchildren to help him. Ryan will leave for TX tomorrow early Wednesday, Alison will be there Wednesday and Thursday and then Baine will be there Friday into the weekend until I can go back up.

Rudy and Lea come daily 2-4. Rudy still reads to Val and Lea was given the job of swabbing her mouth and putting lip gloss on. Dad spoke to them to let them know if they need or want to come more now that it is near the end they should do whatever they need to do for Val and themselves as her parents.

Love and Prayers to Val always....Salynn

Monday Oct. 12, 09
The VNA nurse Mary came today. Dad asked Mary lots of questions about personality changes, mood swings, agitation, and hallucinations as Val's persona is no longer her own. Mary suggested giving the Ativan more frequently to keep Val from experiencing such periods of anger and agitation. For all who know Val, she is NOT an angry person. Perhaps, the cancer did metastize to her brain after the CAT scan of her head was done. Perhaps, this is a reaction to ALL her meds she is on (as it is alot). Mary the nurse did mention to Dad that some people become agitated and even violent or dangerous to hemselves. The Ativan can be changed to a different medication if Ativan can't handle these periods of agitation for Val. Val's request from the very beginning was not to suffer with pain; no one expected the suffering of the mind. Dad describes Val as "honery with abnormal behavior"; not violent yet.

As far as Val's day, well Dad and Ryan had her sitting in the chair twice today. She is awake a little during this, but continues to sleep 90% of the time. A new air mattress was placed on her bed to prevent bed sores. Val's water cup will be switched to a sippy cup as she is spilling her drink now ( last night at 3 in the morning all over herself). Rudy continues to read to Val every day while Dad lays in his bed to rest in the afternoon. Val ate two bites of soup and a few bites of pizza that she requested.

For all the days that Val never paid attention to her pets (at my last visit I had to take her hand to help her pet Fuller). They are on Val's mind in this hallucinatory state. Val is asking if there is enough cat food in the house for Diamond as she needs too take it with her to the next house. " I'm going" I've gotta get out of here" I'm taking Fuller" "Where is Fuller". It wasn't Val's agitated, unusual banging on the window beside her bed that bothered Dad today......it was Val's only lucid question...." Do you think I deserve this?" Somewhere in her mind Val is still able to think clearly about her cancer situation. Maybe the agitation is her way of expressing her anger about it...no one will ever know. I only pray the Angels and Saints have surrounded her from within to be with her in her mind at this time; I pray for peace within her mind.

Love and prayers to Val always....Salynn

Sunday Oct. 11, 09
My brother Ryan has been staying with Dad since last Wednesday and will stay until this Wednesday. This brings peace to us all as it is a very difficult time emotionally, psychologically and physically for Dad.

Val"s vital signs remain stable. Her oxygen is 6% , and Dad alternates 2-3 hours daily of the moisture added to the nasal cannula which doesn't seem to bring on her cough. A catheter was placed on Friday to allow Val to pee without getting out of bed and she continues to wear the diapers. The VNA nurse Mary and a home health aid gave Val a bath on Friday. Dad has signed up for this to occur every Friday. Val's morphine is now given every 6 hours (doubling the dose)instead of every three hours. Val was beginning to be bothered by the taste in her mouth. Val continues to eat only 3-4 bites at every meal and only when it is fed to her. She is drinking less now, not the three glasses of water a day any more.

Dad is still sleeping on the floor on his air mattress with an egg crate on top right next to her bed at night. Dad reports that since he changed the morphine to every 6 hours that she doesn't wake up in the middle of the night as much bright eyed and bushy tailed ready to talk.

Val continues to think that this (269 Windy wood Road) home is not her home. Val says to Ryan in multiple tries " I want to go find my home. Fuller is to go with us.". To Dad she says " I'm leaving soon and Fuller should come." I don't want to mislead anyone by writing that. Val cannot talk the phone, she still has a hard time speaking what she wants, or finishing a sentence and even getting her words out. Today, Val requested to go outside twice; once in the morning and once in the afternoon that Rudy and Lea witnessed. Dad and Ryan were able to get her in the wheelchair, bump it down the stairs and go outside in the driveway for 10 minutes each time with Fuller. Perhaps Val wants to see the outdoors again, perhaps Val is referring she is looking for her home in heaven or leaving to heaven soon. Everyone can interpret her words and actions as you may...we all must have faith and believe.

Love and prayers to Val always.......Salynn

Wednesday October 7, 09
When I left on Monday early evening I kept reinforcing to Dad that Val is peaceful, she is not suffering. Her pain is controlled. She gets brief periods of joy from seeing her animals, seeing a photo, or listening to us talk. She is beginning to look like an angel lying in her hospital bed.

Val's body has switched to the dying mode vs. the fighting mode according to her nurse Mary. Mary came on Monday and explained that the signs of her RAPID decrease in function, her need for increased oxygen, her lack of desire to eat or take her medicines are all signs. We all have to let Val know that this is OK. Mary explained to Val that if her blood levels are low it is her decision whether she gets a transfusion or not. Val's reply was " I don't see what good it would do me in these circumstances" Wow! Dad and I were both shocked, but in agreement with this. We all reinforced to Val she doesn't have to fight any more. How tremendously difficult it for all of us to say these things to her, but we do out of love for her. However, the time has come to allow her to go.

Mary explained that giving transfusions and giving her fluids are actually working against what the body is trying to do in the dying phase. We could actually cause her death to be more uncomfortable. An example of this: When the new oxygen machine was delivered on Monday, it is suggested to add a water humidifier for oxygen given at 5% and above. I said of course lets make the airway moist to avoid nose bleeds as Val is on coumadin and doesn't clot well. Val's body taught us a HARD lesson that is doesn't' want moisture. She was up with Dad on Tuesday morning from 5-7 AM sitting on the side of her bed coughing and spitting up phlem. That has has NEVER happened before. Needless to say, the humidifier is gone and we will allow her lungs to function without added fluid. Dad said it was heart wrenching to see her suffer and cough so much and so hard. Val's oxygen is being raised almost daily and now she is up to 6% by nasal cannula.The morphine is working really well t actually suppress her cough reflex and the three days I was there she had very little coughing and only with position changes.

Val's function has decreased even since I left on Monday evening. Nurse Mary will teach Dad how to change Val's diaper and pants in the bed, as standing without Dad holding her is now difficult. It was just a short week ago today that Val took her last walk upstairs and now she has difficulty just standing.

Rudy and Lea come every day from 2-4. Yesterday for the first time, Dad asked Val maybe she would like Rudy to read to her. Dad's plan is to lay down during these hours as the night are getting rougher with less sleep for Dad. Rudy began to read a Nicholas Sparks book to Val entitled The Nights in Rodanthe. I had just read it and returned it to Val commenting to her what great books she had in her library upstairs. This book in particular is a beautiful love story which takes place on the beach of New England. I know Val will like it. Rudy was THRILLED. For the first time he has a purpose and a way to connect to his daughter during her last days. I am sure it is comforting to Val to hear his voice.

Val continues to be confused and at times hallucinating. Dad tried cutting back the Ativan for the day time and saving that for the night time. After one day, he didn't see a difference. Now Val is frightened that she doesn't know it is her house. When I was giving her a pedicure on Sunday that was the day it began, "who's house is? this where am I?" Last night my brother Baine stayed with Dad. Tonight, Ryan will fly in from TX to stay (unfortunately he lost his job as of 9/30). Val has difficulty answering yes and no questions and rarely finishes a sentence she is trying to say. We have to be very patient at this time trying to figure out how to communicate with her.

Love and prayers to Val always.....Salynn

Saturday October 3, 09 ( My post last night mysteriously deleted so I will try again)

I flew to VT this morning to spend the weekend. I fly out late Monday night.
Val is tremendously weaker than 8 short weeks ago when we were in Maine
together. Now, she needs one person assistance for all these activities: getting up
from the bed, rolling in the bed, standing, walking to the bathroom is almost
a two person job, but I will call it one person for now. She walks to the bathroom
4 times a day, but that is as far and as much as she is able to do in her weakened
state. There are things she can't do any more that all of us take for granted: brush
her teeth, wash her hands standing at the sink (Dad and I have a basin for her to try
to use while she is seated on the toilet), even wipe herself she can't do.

Val 's mental status is declining. There are more periods of confusion and hallucinations.
She has difficulty finishing her train of thought (sadly, she has little spontaneous
conversation), she even has difficulty answering questions ( like would you like this pasta
with sugo or chicken broth?) Actually, the mental status seems unchanged
or no different than when she was on Vicoden. The morphine 1ml = 20mg of morphine which is given every three hours for the break through pain. The fentanyl patch of 125mg on her back is the long lasting pain control. It is sad to she her change positions and tell us she feels
abdominal pain. The fine line will be not to give her too much pain meds so she can't communicate to us, yet control her pain. We trust our nurses to help us with that. Val has moments when she is asking me " who are you? and where am I?". She is not oriented to time or day or year either.

Val's desire to eat is leaving her. She takes less than 5 bites when many small
foods are offered. Her desire to take her medications is leaving her. Her
desire to close her eyes and sleep or rest is #1. She still gets moments of enjoyment when I show her some photos of things she likes, read her a card or letter, or show her photos from the trip to ME. She smiles when I speak her animals. Diamond her male cat continues to find her legs on her bed to sleep which is his favorite spot. Before she was sick, Val would sit for hours in a chair if Diamond had come to sleep on her legs/lap so as not to disturb his sleep. Fuller, her dog, comes to sleep under her bed, in front of the bed or on the love seat which faces her. When Val is up walking the dog is under her feet and as close to her as possible giving her love an affection. She almost trips on him every time, but he is there.

Love and prayers to Val always......Salynn

October 1, 09 Thursday
I must first say thank you to all who continue to send "snail mail" letters to Val. She gets a card or letter almost every day. She no longer reads them herself, but Dad reads them to her. She wonders what is wrong on the day she might not get one. The letters and cards bring her more joy than anyone can imagine.

There have been a lot of changes this week for Val. Last night Wednesday, was the first night ever that Val slept the night in her hospital bed downstairs and Dad upstairs. Dad listened for her with the baby monitor, plus he gets up almost every two hours to go to the bathroom or feed the cat ( The cat had Val trained to do this so now Dad does this.) All went well, except Val complained of pain,which she never does, in the middle of the night so Dad gave her a double dose at that time which seemed to help her.

The morphine is suppose to help with the cough which occurs when Val changes positions. Tuesday night after climbing the stairs (to Val it is like climbing Mt. Everest), she sat in the chair at the top like she always does coughing so hard she vomited. That was scary for both of them.

It was Tuesday of this week that Val's pain medicine was changed from vicoden to morphine orally via syringe in her mouth. I think 1mg every 4 hours is the dose. After two days, Val's pain seems to be controlled on a very low dose, and she is NOT so out of it that she can't verbalize her needs. There is a fine line. Val doesn't want to be in any pain, yet Dad wants her to not be knocked out by it either. Val continues to sleep 90% of the time. The morphine has a high constipation effect. The nurse Mary used a suppository to help Val today. Val remains on the 125 fentanyl patches on her back for pain also.

Val continues to take a few bites at every meal; usually less than 6. That is joke as when we were in Maine I asked her to take as many bites as her age. (as that is how my young children do it 4 bites if you are 4 years old). Val compromised and took 6 to represent the years of her life by tens. She also drinks only when you put the glass in her hand. Her desire to eat is dwindling away. Dad has IV fluids for Val on heand in case she needs them, but for now she is OK.

Hospice trained personnel has been coming twice this week. Tuesday and Friday. Tina Ruth is her name. Dad describes her as a small woman in her 60's. Kate the other hospice trained personnel will come when Dad needs her too also. Dad is getting used to the help and realizes he needs it as much as Val does.

Love and prayers to Val always....Salynn

Sunday Sept. 27, 09
Val has had a few better days beginning on Friday, Saturday and now Sunday. That is good as both Dad and I were quite frightened that last week was the beginning of the end. We feared that she wouldn't experience any form of a "good" day. Well we were wrong . The chemo must have cleared from her system to allow her more periods of alertness and a little more appetite.

Val was able to be very clear in mind when the hospice person came on Friday. Val understood by signing she allowed more help for Dad and more care for herself with more being paid for by the insurance company. The way Dad understands it, he may be allowed 60-80 hours of help in many forms. He will slowly get used to the help by adding it on the days that the VNA nurse Mary is not there (she comes Monday and Friday). Then Tuesday, Wednesday, Thursday, Saturday he could get someone to help clean, cook, sit with Val while he went out and help to bath her when it comes to that. Val understood that this just meant that she gets more care, it was explained that it didn't take away her option to have another chemo if she was ever strong enough. No one wants her to become depressed from the words of hearing hospice, and so far she is OK.

Val was strong enough on Saturday to finally make that phone call to her friend Nancy. She even had a short visit from her friend Laura who is a nun and was the matron of honor at Val and Dad's wedding. By the evening, she was shot and wouldn't admit that just those small things exhaust her.

Val was able to take a shower this morning. She unfortunately had a coughing spell that caused her to vomit all over herself. What better place than the shower as she was washed twice as good today. Dad vows to not have her eat before the shower next time. The whole event though took a lot out of her, and she rested upstairs until 2pm today. Lea did not come for the visit as she has a fever and doesn't feel well. Rudy came by himself. When Rudy and Lea come ,Dad now lies down upstairs during their visit to give them private time with their only daughter.

Dad loves Sundays as it is a day of rest for him. No nurses or visitors coming, no errands to run, and no shopping to do. He allows himself to go back to bed around 9:30 ish and finds that he sleeps deeply for about an hour during this early cat nap. The light rain helped with the rest today I am sure.

Val's fluid on and in the lungs is causing the coughing. Dad observes that it is mostly activity or position changes that causes her to cough. That is what happened in the shower. She is still OK to lay flat in the bed upstairs without too much breathing difficulty with her 4% oxygen.

Love and prayers to Val always.....Salynn

Thursday September 24, 09
Well, for all those who were worried like myself, Val did make it up to her room on Tuesday to sleep in her own bed. She had actually forgotten at 9 pm that she had even said she didn't want to sleep upstairs that night. Thrilled, Dad escorted her upstairs. She was very tired and takes one step at a time. I did try to encourage Dad that if she ever collapses on the stairs to turn her around on her butt and bump her back down..no problem. It is not that easy, but the stress of thinking of what to do if it ever happens will be less.

It has been the Indian summer weather days in VT. Val sleeps most of the days in her hospital bed. She is too cold to open the windows, and has no desire to go anywhere...like sit outside and feel the warm sun on her face. Dad will mention it to her, but lately when she asks if she has to go anywhere today, and the answer is no, she is glad about it. She almost had the energy to call her friend Nancy today like she told Dad she was going to do, but it is the thought that counts. A big thank you to Dad's niece Sabrina who is an occupational therapist assistant who mailed Val a giant care package of well thought out gifts... Dad keeps saying he wished he could thank her. I told him I would do so on the blog.

Val continues to eat very little, feels full quickly and burps a lot. She gets afraid she will vomit so sometimes she stops eating just for that reason alone. She ate a few spoons of broccoli and cheese soup for breakfast, a few bites of a reuben for lunch and a few bites of french fries and broccoli and fish sticks for dinner.

Friday is a busy day. Kate the hospice nurse will come at 9 am. Dad has plans for shopping. Mary the VNA nurse comes at 10. Val wants a flu shot like she has gotten in the past. Dad hopes she is able to get one for her HOPE sake. Not being able to get one will only be one more thing she is too sick to do. The head person of hospice comes at 1:30 for Val to sign papers and learn about all they have to offer.

The Keene Medical supply who delivers the oxygen has Val set up on a new condenser. Val is now on 4% oxygen. Dad also has an oxygen machine that will fill up the portable tanks.
Dad thinks the maximum oxygen levels will be 5 or 6 % . Mary the VNA nurse has brought a wedge for the hospital bed which elevates Val upper torso. This has helped Val's breathing while lying in her hospital bed downstairs.
Love and Prayers to Val always...Salynn

Tuesday Sept. 22, 09
Val's hemoglobin was 7.2 (don't quote me on that number, but below 8). So Dad got her to the hospital today for a blood transfusion of two pints of blood along with IV lasix (a water pill) or drug to have her pee out extra fluid she is carrying in her legs and lungs. Dad went home an slept for 2 and 1/2 hours. He is exhausted and doesn't realize it...actually doesn't allow himself to be. She was released at 2:30 this afternoon. Dad stopped in Barre to buy her a Reuben and a small cremee. She ate a 1/4 of he sandwich and half or less of the cremee. Eating is still very little for her at every meal. She continues to refuse occasionally her fosamax pill (actually, Dad gives it to her in a liquid form). I feel she does this to have some control over this situation in which she is loosing all control. My oldest brother Baine was at their house waiting for them to arrive home so he could help Dad get Val into the house. This was a welcome surprise and sooo very helpful for Dad. Thank you Baine!! Val was resting in her hospital bed all afternoon and told dad that she didn't want to go upstairs today. This was the first time EVER she said this. It is 10pm now and maybe she changed her mind, but Dad was going to put the baby monitor next to her bed so she could call to him. This is scary for Dad, and he didn't know if he would be able to stay upstairs the entire night. He may end up on the sofa down near her.

The hospice nurse and the VNA nurse will both come on Friday. Dad feels confidant that Val will sign the papers so he can get 2 or 3 times a week help. Actually, they will inform him of ALL the help he might need. I think there is alot of ways they can help him which we don't even know.

The chest x-ray was not good, but we all know what is happening in the lungs. The report read: sever pleural effusion on the right lung, complete opicification ( whiteness ) of the right lung making it difficult to differentiate from pneumonia int he right lung. The right border of the heart is also obscured which means there is fluid either around the heart now or just so much around the right lung it is now putting pressure on her heart. The report reads there is considerable progression of the disease state since the last chest x-ray ( I think the last one was when she came back form ME). Dad reports Val has been coughing more and more every day. Val reports she is sore in her abdomen from the coughing.

Small things are happening. Val think she has another ingrown toenail. Small in comparison, but a huge annoyance to Val. We will either get someone to come to the house again or I will cut them when I go up. Another commode is coming on Friday. The one Dad has for Val is used upstairs over the toilet. This one will be kept for downstairs use.

Love and prayers to Val always....Salynn

Sept.19, 09 Saturday
Val with help from Dad was able to walk downstairs and to the car with several rests. Dad borrowed the wheelchair at the hospital to wheel her in to her lung/chest x-ray. The written report comes back Sunday when Dad drives up to the hospital to pick it up while Rudy and Lea sit with Val. Dad asked to see the x-ray and said the fluid surrounding the right lung looks worse than before. This is no surprise as Val's oxygen has been raised to 3%, and she has a persistent cough over the past three weeks. The sad reality of this, is that the cancer in her lungs will continue to fill the pleura sack which surrounds each lung until they both collapse. Val had a collapsed lung on the right in May which was treated with a chest tube and powder to re inflate.

Val had the hospice nurse Carrie for the first time on Friday as Baine drove Dad to the eye doctor in Burlington. Val reported she talked a little bit to her as this woman is a trained Raike therapist. The report from Val was that she like this person and felt safe and comfortable with her. Dad has a form that Val needs to sign to allow him to get more help from hospice. The subject has been difficult as Val doesn't want to hear the word. Dad has been saying it though, and so has the VNA nurse Mary.

Val is resting and thinking all the time, and I hope having sweet dreams. She asked Dad what he FELT about the what the doctor said. DAd said he agreed that she is too weak to continue chemo at this time. He told her again that he didn't want her to have that last chemo, but knows how imortant it was to her and supports her in all her decisions.


The nurse didn't draw blood today while Dad was gone. The orders from the doctor had the wrong date on them. This worries Dad as her Hemoglobin was 8.2 on Monday. He called to ask the supervisor of VNA to make a note to have Mary check that the order is correct for Monday.

The egg crates for both their beds are in place. Val is sleeping almost 90% of the time and eating very little. Her legs are both swollen again. Her skin condition is very fragile as we are trying to avoid any bed sores, by rotating her bed position as often as possible. Val complained of a new weird sore on her eye lid which the nurse will look at for Dad. Val continues to be weaker every day, but still is making it up and down the stairs to her bedroom with help form Dad.

Val is confused more frequently. There was a new photo of a baby at the end of her bed and when asked by Baine who this was she said " I don't know who that is either. I have been looking at him for days now." This more frequent episodes of unclear thinking and forgetfulness is a combination of the medicine, the low oxygen levels at times, and I believe Val's way of escaping reality of her dire situation.

Love and prayers to Val always....Salynn

Wednesday Sept 16, 09
Please continue to send Val letters, cards and pictures as she gets lots of joy from this.
A lot has happened in a weeks' time. I apologize for not keeping better watch to the days I blog.

Val had chemo yesterday. She received the one dose of the gemzar and the fluids and the steroids and anti nausea medication. She had no side effects. She was able to walk in, but Dad pushed her out in a wheelchair. She is in such a weakened state that Dad and the chemo nurse Tony had to help Val dress and undress for the evaluation that follows the chemo. Finally the MD said that "Val , I recommend that you take a break from chemo as you are too weak physically." Since Val was quiet and didn't respond to the MD's recommendation, Dad said we can discuss this further at home Val. Going to chemo has been Val's HOPE. Dad doesn't want to shatter or dampen any of her hope at this time though we all recognize it is futile. Val was able to make it up to her bedroom last night despite being so tired from chemo.

Egg crates are being purchased and put on their queen bed and the hospital bed as Val is beginning to get bruises on her buttocks, and the beginning stages of bed sores. Her skin is very fragile at this time and other areas of her body are getting abrasions due to skin rubbing alone which Dad is treating with antibiotic cream.

Val's right lung is beginning to sound more raspy and which is more fluid building up around that lung. The oxygen has been increased t0 3% and Dad checks it every day to see if he needs to increase it. The new oxygen machine is coming from Keene Medical to allow Dad to administer the new levels of oxygen above this 3% as we are predicting will happen.

Val's pain levels seem to be under control with the 125 fentanyl patch and 3-4 vicoden by mouth which she is still able to swallow.

Val took another fall this past week as she tried to go to the bathroom by herself from her hospital bed. Dad was outside for an hour mowing the lawn during this time. Needless to say there was tremendous tears and guilt when he found her. He had difficulty getting her up, but did so. They worked through this horrible episode together. A hospice volunteer is coming to sit with Val for the first time on Friday while Dad is gone for an eye appointment. The word hospice is not used around Val as that is not what she wants to hear. All of us are not saying these words, only that another nurse will be sitting with her. So now Dad is investigating getting help from hospice and what services are available to him.

Love and prayers to Val always....Salynn

Saturday Sept. 5, 09
Val and Dad continue to either listen to or watch the cooking channel every night from 9-10. On Friday, Val says she wants to cook in the kitchen. So before her parents arrived for their daily visit, Val requested some pesto from the freezer. Found a bowl she wanted to mix in, and found some tomatos in a can that was acceptable. She sat in a chair in the kitchen to mix. This was as far as she got before she was exhausted and said she needed to rest. This was the first time she had the desire to cook in a loooong time. Let alone the desire to do anything herself. She was cooking for Tatti her 90 year old Aunt who was suppose to visit this week. Unfortunately, Tatti has taken two falls this week, and after the second, is in the hospital for evaluation. Prayers to Tatti for her speedy release from the hospital as Val is worried about her as we all are.

The bowl of preparation still sits in the refrigerator for Val to finish. Val was at the hospital today for two pints of red blood cells. This is not surprising, as she has had a fall in RBC to 7 on Friday when the blood was checked. Because this is a holiday weekend, Val was actually admitted to the 3rd floor at CVH in Berlin which is 10 min. from her house. She was there at 8 am and home at 4 pm. Both Val and Dad are exhausted. Dad stayed with her until 11 when Rudy and Lea came to stay until 4pm. Dad left the hospital and called Baine his oldest son. Dad is too upset and worried when Val gets transfusions; afraid of all the possible things that could go wrong. (Val always tends to get a negative side effect afterward; never a boost like some people experience.) To keep his mind off things, he and Baine got to work on the pond pulling and moving stones where some erosion has occurred. So tonight, besides emotional exhaustion, Dad has some physical exhaustion which may help him to sleep.

Dad and I discussed the shower tub chair and thank you to Trudy on Foss street who has offered hers. As of right now, Dad will wait before taking doors off. Val continues to not want to shower. In order for her to still have control over this aspect of her life, Dad will approach it this way, "you can shower on this day with me or the visiting nurse". She can decide whom will shower her. Eventually, it will be a sponge bath in the hospital bed..that is the sad reality.

On a brighter note she looks forward to her friend Nancy and husband Steve's visit tomorrow. Steve has many medical problems himself, and Val knows what an effort both Nancy the caretaker and Steve are making.

Love and prayers to Val always......Salynn

Thursday Sept. 3, 09
A lot has happened in a few days. The pain patch has been increased to 125mg of fentanyl every three days. The vicoden is now 3-4 pills versus 5 pills in a 12 hour period. Mary the VNA nurse was being proactive and asked Dr. Eltabackh for a morphine prescription to have on hand, but MD vetoed. He felt Val was not taking too much vicoden as of yet. The oxygen was also increased from 2 to 3%. Val's oxygen saturations were fluctuating low 90's which is acceptable to mid 80's which is not acceptable. By increasing the oxygen and increasing the pain control Val may experience less daily confusion we pray.

Val is not able to sign her name writing due to the weakness and shakiness. Dad filled out the handicap sticker application.

The decision to finally take a shower was accepted by Val after 8 days. It was a choice of Dad giving her the shower or a home health nurse coming in to do it. The fight was stopped and Val let Dad help her to get clean. The VNA nurse Mary suggested to Dad that he could remove the shower doors in his master bath and get a transfer tub bench instead of the regular shower chair. There will come a time where Val is only sponge bathing in bed. The pros and cons have to be weighed.

Val is having difficulty getting up the stairs to her room at night. Dad and Val have to decide where it would be easier to have Val permanently as she gets weaker. Downstairs offers her the hospital bed, near to the kitchen and a half bathroom. (Our thought would be to bring down a single bed and remove the love seat so Dad could also sleep downstairs.) The other option is to have Val upstairs permanently in her own bed with access to the full bath. This plan would require help to exit the upstairs if there was a need. Val still wants to go ahead with her chemo planned for the Sept. 15 and 22 respectively.

Love and prayers to Val always..... Salynn

Sunday Aug 30, 09
Fall has felt like it entered the state of VT with the temperatures going to 40's at night and high 50's during the day. Dad put the heat on and Val was wearing the white over coat that Steffan gave to her.

Since coming home from Maine, Val has been spent the mornings in her room eating a minimal breakfast and then napping/resting the rest of the morning. Dad brings Val breakfast as well as lunch to her in bed. He sits in a chair next to the bed to keep her company. After lunch, Val takes one more nap before adventuring downstairs to be in her hospital bed for her parents visit form 2-4. The other day, Rudy, Lea and Val took a nap during their visit. Rudy and Lea are extra busy and tired with the nephews of cousin Bella who are going through Bell's belongings etc.

Val abdominal pain has worsened since Maine also. She continues to wear the 100mg fentanyl patch which is changed every three days. On top of that, Dad now gives her a vicoden every 4 hours to control the pain during the day. The difficult thing for Dad is that Val doesn't really tell him when she is in pain. He has to ask almost every hour to monitor her. This may sound unusual as if you were in pain you might tell someone right away or take a pain pill yourself. Val doesn't work this way and never has. She is never one to complain during this whole cancer journey. It is not time to increase the fenatanyl patch yet until Val reaches 5 vicoden in a 12 hour period. Pain is what Val fears most. Val wants us all to make sure the end is not painful for her,
and we have assured her we could do that for her.

Love and prayers to Val always.......Salynn

Friday Aug28, 09
The double dose of chemo has kicked in in all departments. Val has eaten very little, became constipated for three days, and has had increased pain which requires two vicoden at one time. She has had no vomiting which is a blessing. Val continues to be extremely tired with very little awake time. The times of her confusion or delusions has increased also while she is awake.
Val because she has felt basically terrible has refused a shower for 6 days now. This is a very sure sign of how bad she actually feels.

Mary the VNA nurse has seen Val both Wed and Friday. She recommends that Dad keep some morphine for Val in the house as she anticipates the pain to increase. Discussion of increasing Val's Fenatanly patch from 100 to 150 mg has occurred also. Mary always seems to be totally sincere in her words of care for Val. Dad seems so confident in how well she works together with DAd and Val reading his emotional state at each moment. According to Dad, working with Mary is like having a friend in your house. It is a comfort to know Dad feels such support and comfort in the care Mary gives to Val.

Mary has initiated the difficult conversations of letting Dad have medical authority to make decisions for Val when she is no longer capable of doing so . Val was crying and said of course she trusts Dad and has confidence he could make the correct choices for her. As of now, no papers have been signed, but the reality of it is, Val really wants to continue treatment and wants all heroic measures to preserve life. This is still her voice at this time.

Val's blood levels are still on the low levels, but acceptable. The scary thing is that Val's INR is dangerously high. This a blood thinning level. The INR normal level is .9-1.5. Val level went from 3 to a 7. The nurses called two times today to check to make sure Val wasn't bleeding out. This is Dad's worst fear that Val will start bleeding and won't be able to stop. Well, Val is safe so far and not bleeding. Her blood thinner is stopped until a new blood can be drawn on Monday.

Love and prayers to Val always.....Salynn