Monday, August 31, 2009

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, August 28, 2009

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

Wednesday, August 26, 2009

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.

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

Saturday, August 22, 2009

Saturday Aug. 22, 09
Happy 25th Anniversary 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.

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

Tuesday, August 18, 2009

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.

Love and prayers to Val always....Salynn

Monday, August 17, 2009

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, August 13, 2009

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 vena cava 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 DVT which 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.

Love and prayers to Val always....Salynn

Wednesday, August 12, 2009

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 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.

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

Tuesday, August 11, 2009

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.

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

Monday, August 10, 2009

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.

Love and prayers to Val always....Salynn

Sunday, August 9, 2009

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 manicurist Thao. 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.

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

Friday, August 7, 2009

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.

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

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

Wednesday, August 5, 2009

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.

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

Tuesday, August 4, 2009

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.

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

Monday, August 3, 2009

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.

Love and prayers to Val always....Salynn