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 PeasantviewCemetery 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
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.
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.
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.
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 itdown 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.
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'thave 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 airwaymoist 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Wednesday Aug 26, 09 One day past chemo #2 of a set of 6 Val had a nice anniversary with Dad over the weekend. She ate some of the lobster meat her maid of honor at her wedding sent them. Val thought it was very cute Cindy Cato had put a sign on their lawn "honk for Jay and Val it's their anniversary."
On Monday morning, Val was able to go to the burial ceremony for Bella her Aunt. Dad was able to push her in the wheelchair which is coming in handy. Val has been having some rough days and nights as far as abdominal pain. One night DAd was rubbing her back from 2-4am as the pain meds he had given her were not doing the trick.
Mary the VNA nurse was back from her honeymoon on Monday so Val had a full check up. Mary heard the increased fluid in her abdomen and around the right lung by stethoscope despite the new aeration going into the right lung. Val admitted to having some new shakes of her body like she is shivering. This as well as the confusion that is occurring more often is both side effects of the medications she is on. Mary offered Dad some ideas to counter these problems.
Tuesday was chemo #2 of this second set of 6 which Val has elected to do. She received the gemzar and the docetaxol at 75% maximum dose. She had no reactions to the chemo so she was home by 2:30 that day. She has been sleeping most of the time almost 80% according to Dad. Her appetite comes and goes, but her weight at 153 stayed the same as she has fluid building up in her abdomen adding water weight to her.
Today is Wednesday. Another visit to Val by the VNA nurse Mary to give Val the Nuralasta shot which helps to keep her WBC up above too low. Val her RBC shot the Aresnep on last Tuesday. That shot is supposed to keep her RBC from being too low.
Saturday Aug. 22, 09 Happy 25thAnniversary to Val and Dad today!
The CAT SCAN results of Val's head has all come back negative with no signs of metastasis to the brain. This is great news as Val has been quite nervous and upset thinking the cancer had traveled further, but it has not. Her confusion at times must be from medication. Val had not had very good days on Wednesday evening and Thursday as the chemo causes increased pain in her abdomen and a decreased appetite. Dad was able to give her two pain pills Thursday during the night which seemed to bring the pain back under control.
I stopped on Friday in the am to bring breakfast to Val and Dad. We had brought them fresh picked blueberries and homemade blueberry muffins. We also brought them anniversary cards and gifts from all their grandchildren. Val was up in the bedroom and called down to us when we arrived "Is that little people I hear". She was all smiles. My three children kept them entertained for an hour while Val ate a small breakfast and then walked downstairs to her hospital bed. It is nice to see them excited to see three of their grandchildren (they have a total of 8).
Val and Dad cancelled the VNA nurse on Friday morning, not because we were there, but because their favorite nurse Mary has been on her honeymoon all week. Mary will return on Monday to draw blood before the chemo scheduled for Tuesday.
During all my visits to their house I have been helping to organize some of Val's many piles of "things". Her book collection is one such "thing". However, a friend called to borrow the Bronze Horseman, and we can't find it. If any of her friends who read this blog has borrowed it, please call Val as she cannot remember loaning it to anyone. Thanks.
On a sad note, Lea's cousin Bella passed away from congestive heart failure on Wednesday afternoon. The wake is Sunday night and the funeral is Monday at 10 am. Val was close to Lea's cousin so this brings Val sadness, yet peace as she was 90 years old.
Tuesday Aug. 18, 09 Val had a 10:30 am appointment at chemo today. She received her steroid, the benadryl and anti nausea as well as her general fluids by IV. Followed by the 75% dose of the Gemzar chemo drug. She was sleepy in the recliner when I arrived to chemo today. She began by saying to me that she had had a dream about me last night.... didn't' know I was coming to see her today...and she closed her eyes only to say she thought it was a SIGN that I showed up.
Well, she ate better at lunch time and at dinner today. She ate 4 Hershey kisses, five yogurt covered pretzels, three bites of Jane's blueberry cake and a half a grinder of ham and tomato. She only drank when I actually put the water in her hand. She did say...if I eat any more I won't be hungry for dinner. For dinner, she ate a medium bowl of fresh yellow beans with potatoes as well as more of Jane's cake. She is temperamental in her eating. Some days she fights Dad with everything he offers and other days she is more willing to eat. Eating and drinking are of such importance for val at this time. It may not seem like a big deal, but it is. She is really weak and to keep all systems going she needs nourishment.
Since Maine, Val has had a change in her status. Meaning, she has had a great deal of confusion daily and has less stability on her feet. Today as we walked out arm in arm, I was actually frightened she would loose her balance and would fall despite me holding on to her. She seems much weaker to me as well. Dad says she sleeps almost 75% of the time. Dad and I think two things could be causing this. A build up of her pain medication within her system now making her appear actually drugged. A metastatic tumor has to be ruled out so Dad scheduled a CAT SCAN of her brain for 9:30 am on this Thursday.
Val's blood markers are fine, but within the acceptable low. Her hemoglobin remains at 9.2, platelets 130, white blood cells 12, 000. Val's CA 125 cancer marker was 33 last month and now is 40. I asked the doctor why Val got this new blood clot. Other than he can't tell me exactly why, chemo patients are prone to blood clots.
Monday Aug 17, 09 Val had a busy, great day on Sunday. Joe and I and our three kids as well as Alison and John and their one son all visited Val and Dad from 10:30 to 11:30. Val wanted all the grandchildren to pick out a special stuffed animal to keep and take that day. She also listened to Brendan play his cello. She showed Alison the set of china she wants her to have. Val was smiling and happy the whole visit.
Val was visited in the afternoon by her Aunt Tatti, Cousin Bobby and cousin Jane. Tatti is Lea's only sister who is 90 and lives in VA. Jane her daughter-in-law flew down to get her and drove Tatti to their house in NH last week. Aunt Tatti has been close to Val her whole life as she used to live upstairs in their two family home in Barre Vt above Rudy and Lea. Bobby and Val are very close in age and grew up together. The visit went well according to Dad. Val wanted to give Jane some of her clothes which she did.
Val is going through a phase where she doesn't want to eat again. She tells Dad she is full. She has been sleeping all the time. Her blood levels are stable with her hemoglobin at 9.2.
Chemo is planned for tomorrow at 10:30. Love and prayers to Val always.......Salynn
Thursday Aug. 13, 09 The CAT SCAN report is in. There wasn't really any new bad news so that is the good news. Both lungs remain with very large number of pulmonary lesions or tumors throughout. That is why Val remains on 2% oxygen. There is some improved aeration or air moving into the right lung which is good news as the entire lung collapsed back in early May. The right lung now has an extensive pleural effusion; that is fluid build up surrounding the whole right lung. The chest tube she had placed in May was suppose to drain this. Most likely, this is the cancer killing the good lung cells resulting in this new fluid build up around the right lung again.
There has been an enlargement of the tumor on the anterior aspect of the liver from 1 cm to 2.3 cm. The tumor on the inferior/medial aspect of the liver is also 2.3 cm. The common bile duct remains enlarged to 3 cm. The tumor on the pancreas tail remains unchanged in size measuring 4.4 by 2.3 cm. No new tumors in the abdomen were found.
Val had a filter placed into the inferior venacava back in Dec. to prevent blood clots from traveling to her brain or heart or lung. The scan shows the new blood clot or a DVTwhich is located in the left common iliac vein extending into the left external iliac and femoral veins
The pelvis now has free fluid scattered within the deep pelvis area. Again, this is the cancer cells killing off the good cells and leaving behind fluid.
Wednesday Aug. 12, 09 It was 8:30 before I got a chance to speak to Dad tonight. He was downstairs about to help Val walk up to bed. Sometimes, she likes to stay downstairs to rest...the hospital bed is reeeallly comfortable she says. I think she may just like being downstairs for an hour more to pretend the day is not coming to an end. Don't ever forget, Val is a night owl like her parents!
Dad said the nicest things happened to him today. First, his neighbor Audrey who is an OR nurse at CVH said she would be taking the day off from work on Thursday to check in on Val while he was at the eye doctor. She said "You've never asked me to help before, and I want to.be there for you both." I told him "That's so nice, I think I might cry." So, we both did for a moment. I reassured him that it is "OK" to ask people for help. There are so many people willing to help Val and Dad, even though he has difficulty asking. He also said, that his friend Mary Simoneti called to tell him that she was around on Thursday. Mary used to be the school nurse at Spaulding High School where he used to teach if I am not mistaken. Blessings occur everyday and this is an example.
Despite Val's resistance, she let Dad put the raised toilet seat with armrests over the master bathroom toilet. She doesn't like it, but it is a lot easier for her to get up and down from.
Tuesday Aug. 11, 09 The reality of it is Val is a fragile weak person at this time. Today was a sleepy day as it was rainy in Barre, VT. Since Rudy and Lea were not visiting this afternoon, Val and Dad were resting and sleeping most of the day away. Unfortunately, Val didn't wake Dad while he was napping. She got up from the bed upstairs and tripped on her oxygen cord and fell to the floor. Dad awoke to a big bang. Val is not steady on her feet to begin with. As I told Dad, if he said she fell from loss of balance alone I wouldn't have been shocked. There were several times in ME that I had to just steady her while she was walking. Needless to say, this was a scary day because of the fall. Dad had to bring the footstool over to have her put the good leg, the right leg, under her while putting her hands on the footstool to try to rise to stand. As of right now, her only injury is a sore lower back which they are putting some ice on. The second injury is a breach of trust now ...Dad has to know Val will wake him or else he will never allow himself to surrender to sleep. The third injury is the guilt that Dad must forgive himself for not hearing her. He is exhausted and I am happy to know he is capable of napping. He never once let himself nap despite my coaxing and encouragement while we were together in Maine. Dad has an eye appointment in Burlington on Thursday. Now, he is even more scared of leaving her with her parents who are both 86. We brainstormed some people who could be called in case she needs someone. He won't ask my brother Baine or my sister Alison as he doesn't want to take them away from their jobs. They would come if he would let them. I pray the injuries Val has sustained are s minimal as they appear tonight.
Monday Aug. 10, 09 It was a busy day. Dad and Val were up at the crack of dawn to eat breakfast before the visiting nurse came to do draw blood and do a routine check of all systems. At 9:30 Val began drinking the radioactive dye liquid that prepares her insides for the CAT SCAN. Dad drove her up to CVH in Berlin which is only 10 minutes from their house for the scan scheduled for 10:30. With a few delays, the test was completed and they were back home by 1-1:30. Dad had hoped Val would like to go to the cafeteria for lunch in the hospital, but she just wanted out of there. She rested peacefully the rest of the afternoon. She continues to eat well or at least a minimal to moderate amount of food for each meal. Either the chemo is out of her system or the one steroid a day is helping. The results of the scan will be in writing by Thursday we think. The amazing thing is that during the week we were in Maine, her Hemoglobin level rose from 8.2 to 9.2. The WBC is high again at 144 vs. 117 before ME.
Prayers to Bella, Val's Aunt who is 90 and went to the hospital today by ambulance due to trouble breathing. She suffers form congestive heart failure. At this time, Bella is requesting to be put into a nursing home. All the red tape is to follow.
Sunday Aug. 9, 09 Val was happy from the moment we got to Maine and all throughout her trip. There was not a moment she expressed any sadness. Why should she be she though? Kennebunk Maine to Val is the epitome of Heaven on earth and always has been. She experienced only peace and an inner feeling of being at home on Gooch's beach. One time, she even told me she felt this was where her soul was born and thus drawn to it. In past summers, she would spend a month at a time there. I commented to her that I never could understand how she was never lonely. Now, I understand. She had all the animals on the beach and their owners keeping her company every day. The routine we had for four days was the routine she kept every day she had been there previous. She would get up and be on the beach with Fuller from 7-9 am and then go back to bed for a rest, only to return to the beach after 5pm until sunset. She kept this routine throughout all types of weather. The joy and happiness that Val experienced in Kennebunk of the beach of Maine was the happiness anyone of us wishes we could experienc in our lives. Val had that at Gooch's Beach.
Since we've been home in Barre, Fuller has been demonstrating the fatigue we all feel. A sort of exhaustion that the adrenaline we were running on was allowed to come to a stop. Val remains with no complications from our trip except a superficial bruise on the back of her right thigh that we think was where the wheel chair cushion ended. Just an example of how fragile her skin and vascular system really is. Dad and I decided to try an ace bandage around the top of her right thigh to help reduce the swelling which may reduce the pain she feels when she rises from sitting and when she walks. She is now going to be taking one steroid a day versus the two she was taking in ME. Val ate last night for dinner the Vietnamese egg rolls that she bought from her manicuristThao. Delicious!
I was able to organize Val's clothes a little more last night. She is now a size large versus a 2x. All her clothes that fit are in a drawer and all the ones that are too big are packed away. She also allowed me to borrow her address book so I could write little notes to her friends in ME. Please realize that she shakes when she writes so it is difficult for her to write. But she LOVES getting letters in the mail; she doesn't check her email any more or really have the energy to talk on the phone, please wrote to her.
I kept looking for a special sign from the Gods while I was there. As I reflect, I believe I was looking too hard the sign. The trip itself was a true miracle. The Gods were looking out for Val bringing safe travels to and from, the perfect weather, the friends and dogs, and the joy my father and I experienced watching Val experience such happiness.
Friday Aug. 7, 09 The stars aligned for this trip. For those that know Val, she believes things happen for a reason. It was another great day in Kennebunk. It started at the beach with visits from all her friends...I won't mention names as the morning is FULL of people and FULL of dogs!! A beach family of support has been with Val for four days, and she surely felt from each one of you your support, strength, confidence and love. To top off the morning trip to the beach Val had a heart felt moment with Barbara Bush. She came straight to Val sitting in the wheelchair to say hello and how good it was she was at the beach and of course which one is your dog? Val will now have a picture with Barbara Bush to put next to her one of her and George taken years ago in the pharmacy her in Kennebunk. Val has always admired Barbara and tracked her well being. It was a genuine visit from Barabara which shows her goodness comes from her heart.
Val's friend Diane came to visit at 9:30 to 10:30 as we were making our way home from the beach. Val was able to nap for an hour before she got in the car for her scheduled manicure/pedicure. I can't thank Thao enough for the professional care she gave Val's toes to keep her from getting an infection from an ingrown toenail. (That is truly the last thing Val needs.) At 2:30, we were off on a drive past the Bush's home and out to Porpouise Beach. From there back to downtown where she wanted to buy her two very special nurses a gift from her trip. She waited in the car while I showed her the choices....Val loves to shop.
Val was able to nap just one hour before dinner and then off for the final night and sunset at Gooch's Beach. It was great as her friends Sarah, Betty, Gabrielle, and Peggy and Fred were there to give best wishes and share/ exchange one more time. There was good fortune this night as I found two more sand dollars at the beach this evening. A good sign I believe.
Thursday Aug 6, 09 Wow!! What a terrific day from the moment we left for the beach. Val spent the morning at the beach seeing all her friends!!! She saw everyone from her friend Steve and his wife to all the dogs and more dogs. As we left the beach her friend Gabrielle and her husband brought their two horses in a trailer to the sidewalk in front of the Naraganset. Val was able to see the horses and pet them and love on them as they walked around beside her on the side walk!! For those who know Val she loves all animals. She had gone with Gabrielle and her horses to the Colony resort in Kennebunk to walk the horses on the grounds and have all the patrons ride or pat. She loved it all!
She rested for the rest of the morning!! She returned the the beach at 6pm. How, sorry she was she missed Gabrielle who waited form 5-5:30, but promised to come back in the morning. Her good friend Donna was waiting at the beach for her in the evening and spent the whole evening withe Val. Val was able to catch up on all the gossip of all the dogs whom she loves. The sunset was as beautiful as every moment has been.
She has been very stable medically since we have been here. She is not running a fever, her swelling in her legs is stable and she has no increase in pain. We have been very lucky.
Wednesday Aug 5, 09 Val was up at 6am dressing and ready for when Dad came back from the bakery with her favorite breakfast danish. By 7:15 she was out the door and on the beach at 7:30. The morning was beautiful and the tide was low which couldn't have been more perfect for us getting her down there by wheelchair. It takes two of us to drag and push that chair backwards toward the water so she is close enough to meet all the dogs walking. She saw sooo many of her friends from her days past of walking this beach with Fuller. We took some photos of the dogs she saw as she got to hold the little ones! She is still looking for her friend Steve and friend Donna.
Our plan to is get her to the beach early each day before the dogs are off at 9. Then get her back to the beach after 5 for the evening dog walkers. This evening her college roommate Debbie joined her for an hour.
As Val was going to bed this evening she said " Up here on the beach in Maine, I don't feel like I am sick". I responded that I thought that was great. However, I reminded her that she is taking two steroids each day to give her this elation feeling and increase her appetite; both of which are occurring!! I told her if I could give her steroids every day I would, but I can't, so let's enjoy every moment you are here and do all the things you want to do.
Tuesday Aug 4, 09 WE'RE HERE!!! We left at 8:45 we arrived at 12:45 into downtown K-Port where we bought lobster rolls and ate them in the car while looking at George Bush Estate. We drove Val around Kennebunk downtown before actually heading to the house to unload.
She rested all afternoon until 5 when we ate dinner out on the porch. After dinner we took her by wheelchair down to the beach. She wanted us to push the wheelchair closer to the water, but she was sinking too much we could only get half way to the water. I just went up to all the people who were walking dogs and asked them to bring the dogs to Val. Everyone was happy to show off their dog to val. On the wheelchair ride back to her house she was able to hold two little puppies which brought such smiles to her face.
Well, she is tired...basically exhausted, but so excited to be at her home in Kennebunk. The steroids she is taking is helping with her appetite which is all we really have to combat her lowering blood levels. If she eats well her body may produce more blood cells for us.
Aug 4, 09 Monday We have the rental car (an Expedition) half packed and we are leaving in the morning for Kennebunk, ME. Val ate a little soup for breakfast, some bites of sandwich for lunch with some creemee and then for dinner some soup with salad and some bites of sandwich again. She is forcing herself to eat a little more.
By this evening the two steroids she will take daily while we are there were already kicked in and she was picking out earrings and jewelry for the trip. Her nurse Mary came this morning to draw blood and her RBC went down from 8.9 to 8.2 which is a little scary. When it gets to 7 she needs a blood transfusion. I asked Val if she wanted to request a transfusion for Tuesday..." No, let's just go." So that we shall in the morning. If her blood goes low while we are there she may have other symptoms or side effects, but we have no plans of having a visiting nurse or going to the hospital . She will get the transfusion when she gets back if she needs one.
Val's biggest problem is a new blood clot in her left groin area that has caused significant swelling in her left thigh by 5 inches and left calf by 3 inches. It is painful for her to use the leg to walk and get up and down. So, Dad pulls her up as best he can to prevent the pain in her left hip. We have the wheelchair with elevating leg rests so we will use that to wheel her to the beach when she wants to go. The dogs are allowed on the beach before 9 and after 5 so Val is looking forward to seeing the dogs and all her friends on the beach. She hasn't been there since last July. Here we come. May all the angels be watching us as we travel and keep us safe while we are there.
Wednesday July 29, 09 I spoke to Val's friend Donna from Kennebunk ME this morning on the phone. I asked her to be the news release person for us up in ME to let all Val's beach friends know she will be there next Tuesday thru Saturday.
Val's nurse Mary came today. Val's chest wound looks better almost as if it is on the verge of healing. Dad has it covered with a band aid now. Val's BP is running low when she is lying down 80/60 and goes up to 100/60 sitting. Val ate dinner sitting up in the leather recliner for dinner tonight whihc is something she hasn't done in a month or so now. She has to spend a little more time up in chairs and not so much time lying down so she can tolerate the wheelchair and her sitting time at the beach. So now is the time to have her walk a little more each day too ( she won't be so much against it if she knows her goal actually going to happen in one week). She has been eating more every day a few more bites and a few more sips to gain a little more strength.
Everyday Dad and I are checking our list and talking about the rental car and all we are bringing and all we need to do ahead of time. Going to ME is something Val really wants to do and we will do everything in our powere to make it happen.
Minday July 27, 09 Val has had two better days! She began eating a little more yesterday and a little more today. She woke up today asking Dad "When are we going to Maine?" She and Dad were watching a reality show on Sunday night about a cooking cook off the final show is next Sunday night and Val is looking forward to watching it.
Mary the nurse came today. The WBC continues to increase from last Friday. Val is fever free though, and all the results trying to find the reason for the increase WBC count have come back negative. So maybe the Nulasta shot has risen the WBC up as all other reasons are unexplainable. The RBC is up to 9.2 and the platelet number has risen showing us that her body is working to produce the platelets herself. The thrush in Val's mouth has lessened too.
Saturday July 25, 09 Val 's blood was drawn twice yesterday, once in the morning out of her arm, and then because the blood levels weren't so good again in the evening out of her infusaport in her chest. The evening draw out of the of chest port was to check that site specifically for an infection there. Val's WBC count is up to 15,000 (normal is 4-10,000). She has an infection somewhere, but now the hard part is finding it. So a urine sample was taken also. The nurse Mary thinks Val has a thrush like infection in her mouth as her tongue is coated with a white layer. Mary brought Val some special swabs to help this problem.
Val's RBC count is down from 9.2 to 8.7. Her platelets are down t 44 from 60 so Dad has to stop her coumadin for now. The miralax keeps her bowels going daily. The fentanly patch remains at 100mg with one or two vicoden daily to supplement so her pain is well controlled.
Val is veeerrry tired. She refused to take the shower yesterday which would adhere to the every other day schedule, but Dad was able to coax her today. She is eating almost nothing.... a few sips of soup for breakfast, a half a white bread sandwich of 4 small squares of mayo and tomato, and 1/2 half a peach and some blue berries for dinner. This is with much reluctance and much coaxing on Dad's part. Despite her weakness, she is still walking downstairs to spend the day in her hospital bed, visit with her parents downstairs, but return to her bedroom upstairs to sleep a night.
July 23, 09 Thursday Val was not in a good way this morning. Her two vicoden and one ativan was not touching her pain this morning and she was not eating. By lunch she was a little more comfortable and ate some sorbet. Dinner she was back to her Campbell's tomato soup. Lea had made some small pancake like things that Val had requested, but they were "too heavy" and Val sent them home with Lea. Rudy went out and bought 14 pints of strawberry sorbet that Dad hadn't found. It might be a little excessive in the amount of pints, but the gesture was out of pure love for his daughter whom he thought was eating a pint a day. She barely eats anything these days though.
Val's platelets were 80, 000 yesterday, but they went down to 60, 000 today. We learned that Val won't be ready for a platelet transfusion until her platelets are down to 10,000. She does have to bring her coumadin from 3.5 down to 2.5 due to this platelet level.
Tuesday July 21,09 Four days past chemo # 13 Wow. I didn't realize I hadn't blogged since last Wednesday. Busy summer days down here in Jersey.
Val was able to go to chemo last Friday July 17, 09. Steffan Ryan's wife was able to visit that day during chemo. Dad said that Val was alert and speaking with a really nice couple from Plattsburg NY (she has stage 3 ovarian cancer). These women were discussing their pain patches. Val feels no real effect per say when the 100mg patch is put on whereas this other woman who receives 25mg feels something within the first hour. Don't get me wrong the pain patch is working for Val and giving her relief, but the actual feel of it working is something she doesn't perceive.
Saturday Val was resting most of the day. Baine and Denise wanted to visit, but Dad said no as he was too exhausted and don't forget they have Rudy and Lea everyday visiting for two hours. Saturday, Val received her nulasta shot to help keep the white blood cell numbers up. Speaking of blood cells, Val's RBC count was actually a 10! Wow a number she never really sees as she is usually 8 and normal is 14-16. We do believe it was from her two pints of blood she received last Wednesday and the shot of aranesp she got the previous Friday kicking in ( it works in a 1-3 week time span to boost RBC).
At chemo on Friday, the chemo nurse Tony mentioned that we could get a prescription for steroids to give Val a boost during her trip to ME that we are planning. I thought it was a great idea as she seems to feel a little less pain when she is taking them. Also, Val said that she would wait the full 21 days before having the CAT SCAN. But if she feels well enough we would go to ME before that time. It is really a Russian roulette game as to when we go to ME. It is a decision that Dad ,Val, the nurses Tony and Mary are making together. We want her to be as stable as possible to avoid having to take her to the hospital up there for infections or blood transfusions. Val is getting excited as she told Rudy and Lea that Salynn is going to come and take us to ME when I am feeling stronger. It is great she is looking forward to it.
Wednesday July 15, 09 Val has been sleeping a lot these past two days due to fatigue and low blood levels. On Tuesday she had a short visit from her friend Ginny. Val was able to give her back a pair of gold earrings Ginny had given to Val. She had intentions of doing this for at least a month as I had made her write Ginny's name in the box so I wouldn't forget to whom I was suppose to give them to. How special that Val got to do it herself!!! I am sure the visit was very special to both women.
Today, the WBC is 7ooo normal low is 10,000. Her RBC dropped from 7.5 to 6.5 so she went up to CVH at 11:45 today for two units of blood. She is still there at 6pm as I type this as they had a difficult time matching her blood today. Dad is with her as well as Rudy and Lea who always stay the entire time she ever gets a transfusions. Pray for no transfusion side effects for Val as she has experienced some bad ones from transfusions in the past.
July 13, 09 Monday Three days past chemo Val has slept the days away starting Saturday and Sunday. She needed the rest. She did make it down stairs each day to sleep in her hospital bed. Dad has been letting her eat all her meals in bed again, but being down stairs makes it easier for him. Dad actually had to wake her to eat lunch and dinner. She continues to eat very little, maple creemee with berries, ensure protein drink, ginger ale, and tomato soup are her staple foods. I know she continues to lose weight as she eats so little.
Val has kept all her food and pills down since Friday's chemo. She continues on her antibiotic for the UTI. Sunday she was fever free for the first time in almost a week.
July 10, 09 Friday Chemo day Val hasn't had the best of weeks. It really basically was rotten. Here it was suppose to be her best week the third week after her chemo and all week she fought a fever and didn't feel well. As it turned out, she has another urinary tract infection. She started the antibiotics on Tuesday, but come Thursday she started vomiting in the morning, by afternoon she was eating a little tomato soup and held down dinner also. Friday morning, today, started off the same vomiting with added diarrhea and a fever. At 8:30 she wasn't going to chemo at 9:30 she was going to chemo. What a roller coaster for Dad emotionally.
The good news is her chemo CA-125 marker is down to 30. She was able to get her IV fluids, her anit-nausea meds and her gemzar chemo today from 10:30-2:30. Ryan and Steffan were at chemo today as Ryan has never witnessed the chemo yet. Val saw the MD after chemo. Dr. Eltabackh, couldn't explain the fever except to say most likely it is the UTI, or the cancer itself. The doctor continues to say that the abdomen has less distention and less fluid which tells us her abdomen is not filling with cancer. She does have the tumors on the pancreas and liver that has been there since the last cat scan. The next chemo is next Friday and 3 weeks following is the Cat SCAN. .
I myself saw her chest wound site on Thursday morning in between the vomiting and I can say the wound looks great...smaller, less deep and not at all infected. It looks like a wound that might actually close in the next month. Hooray.
On Thursday, I was at Val's for the morning. I actually drove down a Yukon car so Dad and I could sit in it and put Fuller into it. This is the type of car we will rent to go to ME after the CAT SCAN. We analyzed the car and discussed where we will put the oxygen and the rental wheel chair. I drove it on the lawn in front of Val's window as she wanted to see it. She liked it!!! Then Dad and I went through her clothes to find her large and extra large sized clothes to take to ME. We also found all the travel bags. Dad and I also tried to make a big, giant list of all the things we will need for the trip. Something to look forward to!!!!