Sunday, September 27, 2009

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, 2009

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 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 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, September 22, 2009

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

Sunday, September 20, 2009

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, September 16, 2009

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, September 5, 2009

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

Friday, September 4, 2009

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