Steff's visit with Val & Jay on 1/25/09

I visited with Val for a couple of hours last Sunday. We had a very nice visit. I felt better after seeing her. She looked strong to me and had color in her cheeks. We did visit in her bedroom where she is most comfortable. I also think she feels her bedroom is her "safe" place along with having the conviences of a full bathroom near her. Jay visited with us and fixed Val lunch. She ate well and drank well. After a few hours of visiting, she was tired and needed to rest.

I am so thankful I was able to go to VT and see she & Jay.

Much love to Val & Jay.


Steff

Friday Jan 30, 09 7 pm
Dad and Val left at 8 and got home around 5pm from chemo #3. Their favorite nurse Tony was sick so Joanne administered the chemo treatment. She received 20% less of the dose today and will at every 3rd chemo to give her body a break. Everything was given the same as the second chemo so Val should have the same results and feel "as good as she did last time". The CA-125 marker was 245 last month and now after the 2nd chemo is 146 (Yea!). The MD listened to her lungs and felt that her R lung presented with less fluid compared to last time. She still requires oxygen, but this deserves a (Yea!) also. The MD palpated her stomach and decided it was less hard than last month...what this tells us I am unsure. Except to tell you that the yesterday Dad reported her abdominal pains as worse. She still takes her two pain pills a day apparently. The chest x-ray and abdominal C-T scan which we thought were happening after the third round of chemo is not happening until after the 8 chemo. He originally told us these tests would be repeated after 3 and that she would get only 6 rounds so why he changed his mind on these two factors is an answer yet to get. Thank you to Baine and Denise who met Dad and Val at chemo and who drove them back to Barre after it was over. (Denise followed them as Baine drove their car). Dad went to lunch for Mexican with Alison. She reports he is still in many phases of coping: angry, sad, angry, sad. Thank you to Nancy who spent some time visiting Val during her chemo today (Nancy please comment on this blog if you could. Thank you ).

Val apparently looked like a million dollars today. She wore a great pink hat, pink outfit, lipstick and jewelry. She has them fooled down at chemo. No one would know that she doesn't leave her bedroom, refuses to walk downstairs or take care of her animals, and eats all her meals with Dad looking at the back of the television in their bedroom. So if anyone can encourage her to take some steps to "live while she is living" that would be much appreciated from myself as she won't do it for me or my father. Love and prayers to Val always Salynn

Friday Jan 3o,09

This past weekend Ryan's wife Steffan was in from TX and was able to visit Val and Dad on Sunday so look to this blog for her comments.
This week also Prudy Val's friend visited ( I think on Tues.). She may want to comment also for us. Thanks.

Cindy Catto called from FL and has allowed me to add her comments.....
"I just had a great chat with Val to wish her well tomorrow and tell her I would see her next week. She was really upbeat and said she going to wear earrings and maybe even lipstick to tomorrow's chemo. Val talked about giving your father cooking instructions for a tomato sauce that even a first grade could make. She is feeling like she's starting to heal from the surgery.
I heard the old "Val" in her voice. I think this is something to celebrate. I'm not sure how many people read the comments on the blog spot; so please feel free to quote from this e-mail."

Cindy Catto

Thanks for all the support form family and friends. Love and prayers to Val Salynn

Jan 25, 09 Sunday (Day 16 after chemo#2)
I spoke to Dad last night for 20 minutes. That is chatty for him! He stated that the first 7 days post chemo for Val were very tiring, but since day 10 she has had pretty good days where she eats well and rests well. She gets up stays in the chair in her bedroom a little, walks in the hallway little and then rests. She did go down stairs 3 days ago to help Dad make the "sugo" (red sauce), but otherwise she doesn't want to go downstairs. She was apparently craving Dad's eggplant Parmesan. She is now on 2 senna pills and her BM are 2-3 x per day with no pain. She stands a little in the shower, but still uses her shower chair all without oxygen. When she gets out of the shower, her oxygen is down to 85 before she gets it back on. Her right calf is still swollen, but not painful despite her coumadin level being at 1.4 ( they like it between 2-3). I mentioned Jobst stockings to him and explained that they have to be measured and she would have to wear them. He said he would speak to her and see if she would wear them.. I explained she could just wear one knee high on the right to stabilize the clots and prevent them from moving on her. Less swelling means less discomfort in that leg. She is a tough sell though form all that know her well. Her friend Mary Lou has spoken to Val and shared her own experience with the Jobst stockings so she may have been a positive influence too on Val. The last RBC count remained at 10.4. The next CA-125 marker number will be drawn this coming Wednesday Jan. 28. Her next scheduled chemo #3 is this Friday Jan 30, 09. She continues to take two pain pills a day for her abdominal pain. One she takes and hour before Rudy and Lea visit which is everyday around 2-4. I was happy to hear my Dad say it is a little lonely and we look forward to their visit everyday. Thank you to Paul Porior who will drive Dad to his eye appointment on Monday Jan 26. Rudy and Lea will come up and stay in the house with Val. Dad can't drive after the appointment as they will dilate both his pupils to check his macular degeneration which has been stable for a few months. Love and Prayers to Val Salynn

January 19th

January 19th.
I spoke to Dad on the phone today. Val and Dad are resting today as they are a little tired out. Val has had 3 good days in a row so that has been good. Val has been eating pretty well and enjoying some Odawalla drinks. The home nurse is coming tomorrow to take blood and hopefully the red blood cell count is staying up.
Love and Prayers to VAl !!!
Ryan

Friday 1/16/09

I spoke with Dad on the phone today at 2:00 o'clock VT time.
They got a good blood report back yesterday that Val's red bloood cell
level is at 11. So this is good news as Val does not need to go for a
transfusion at this time. This level was at 10 on Monday so it is good that
it stayed up and even went up a little. Val was up and took a shower today.
The swelling in Val's leg has gone down a little and she was able to walk in the hall
upstairs today. Val has been eating pretty well yesterday and today. Apparently
she is enjoying some prime rib and jello.
Val is still pretty exhausted and resting a lot.
Hopefully the Vermont -24 F is not going to last much longer.
Love and Prayers for Val!!!
Ryan

Wed. Jan 13, 09
Dad and Val are having land line telephone problems. They will be up and running tomorrow on Thursday after the repair man is there.You can call Rudy or lea if you need something urgent before Friday. They do have their cell phone if needed. From speaking to Tony the chemo nurse Val is passing her hardest days of 2-5 after chemo #2 Last Jan 12. We are expecting the next chemo to go even better if this one continues on it's current positive track. Day 7-10 post chemo is where the blood may dip and transfusions may be warranted. Rudy is trying to convince Val to take her Tylenol for the abdomen pain vs. the codeine which is addictive and has constipation effects. Kudo's to Rudy for trying we are all supporting you. We are all hoping that Val will begin to go downstairs once a day again real soon for so many good reasons! Love and prayers to Val Salynn

Jan 12, 09 6 pm
I spoke to Dad tonight and he reported how tiring the trip was for both he and Val. " The trip wears her out. When we got home she didn't want to stay down stairs at all". "Baine was a big help to us as he stopped at Dr. Ettaback's office before his class in Burlington. He walked the dog which was a big help". Dad said they got to the MD at 11:30 as they stopped at a store to get the Adwalla drinks that Val likes so much. She did get her shower yesterday so tonight and tomorrow will be days of rest. Dad expressed that Val was upset over her CA-125 marker results which came back today. After surgery CA-125 was 265, after first chemo CA-125 was 165, today CA-125 was 245. The chemo nurse Tony explained the marker can be affected by many things esp when taken so soon after giving a chemo treatment. I was surprised and happy to hear Dad even picked up a pamphlet to read to Val about how variable the marker is. Of course, we all want this marker to keep going down with each chemo. Tony drew Val's blood so the visiting nurse doesn't have to come tomorrow. That is one less person coming tomorrow as Dad has to go out to pick up the organic dog food chicken necks. Ans he may do a little shopping as Ginny Val's friend will stay with her. So Val describes this abdominal pain as the same pain before surgery which has reappeared that last week before Jan 9. She takes codeine for the pain which constipates her. I was encouraging Dad to talk to Tony about different meds that wouldn't constipate her. As now, the seneca laxative is working well with less pain with her BM's. For good news, she ate minestrone soup with some strawberries for dinner.
Love and prayers to Val. Salynn

Monday January 12

I saw Val and Dad at Dr. Eltabbach's office at noon today. Val said that she felt fine, and walked fairly easily into the building by herself. She was there to receive her $6,000.00 blood enhancer shot. Val has not had any vomiting or nausea as of this time. Our prayers are working. We are so hopeful that she will have more than two out of 21 good days during this 2nd 21 day chemo recovery session. We appreciate your continued support and prayers.
Love,
Baine

Jan 11, 09 Sunday 11:00am
I spoke to Dad who was melancholy as Val has been sleeping deeply for a couple of hours this morning. He reported that Val had been up early ate eggs with cheese and choc milk, brushed her teeth all by herself and was regular with painful BM due to the seneca medication she is on that increases the bowel contractions. He said she had two good days up until around 11:30 yesterday when she just began to feel uncomfortable ( like she had poison circulating in her body is how I interpret this). She even picked up a magazine and made a few phone calls before this occurred. Both had been extremely anxious awaiting the nausea and vomiting to begin which hasn't so far (knock on wood). Dad is mentally preparing for tomorrow's journey to Burlington with Val by himself to get the Nulasta shot that is done to help keep up her stem cell production in the bone marrow. He plans on getting her to shower this afternoon as it will be too busy tomorrow. Dad shared that Val for the first time last evening mentioned her "spirits were down". You each have your own connection with Val so each can interpret this in your own way.
Love and prayers to Val Salynn

Sat Jan. 10, 6 pm
Val and Dad waited all day for the nausea and vomiting to start. None ever did. How grateful are we all for small favors. By noon, Dad said Val started feeling a little tired, but was still eating. She didn't feel like coming downstairs despite Dad's encouragement. Rudy and Lea spent a couple hours with Val as they always do every afternoon, and left around 4:30. Her right leg with the stocking was bothering her all day. Love and Prayers to Val Salynn

Sat Jan 10, 09 12:30
Baine drove dad and Val to and from Burlington yesterday for chemo #2. Dad said it was a big help having Baine; 'he waited on the two of us". He also took Dad shopping for groceries, Dad got a hair cut,and they both did some "book work". Sounded like there was some quality bonding going on while Val had her chemo. Her visit started with and evaluation by Dr. ettaback. He showed Val where the blood clots were in her right leg and told her she had to wear the stocking during the day ( she will now the MD has told her to). He listened to her lungs which he felt sounded more clear with less fluid (hip hip hooray). (During chemo the nurse Tony tried to reduce and take Val off the oxygen for a period. Her oxygen saturation dropped so she remained on 2 %. That OK she didn't need more o2 so we are ahead of the game.) He palpated her abdomen to identify the source of Val's discomfort which is relieved with vicoden, but had no answer why for her. The chemo nurse administered different nausea meds to help Val not have such a bad reaction after chemo. And during chemo there was no allergic reaction what so ever!
They left the house at 7:30 and got home around 4:30. A long day, but when I spoke to them at 5:30 Dad and Val were downstairs having soup and crab meat for dinner feeling only slightly tired from the day. Val did not wear her sea-band bracelets for naseau , but the chemo nurse spoke positively about them. I hope she wears them. Her hemoglobin was 11 on Thursday and 10 on Friday. No Ca-125 marker has come back yet. No fever as of yet. Her coumadin is back to 1.7 on 3 (pills or mg i don't know). Love and prayers to Val completing round #2 four more to go. She can do this!!!! Salynn

Jan.8, 09 8:30 pm Val's best day out of the first 21! She called two friends today and actually got on the phone to speak to me for a short time. I encouraged her to drink the ginger teas which are suppose to help with nausea, wear the sea-bands on her wrists for nausea during chemo and every day following, and to try to take ALL of her vitamins EVERYDAY. I am worried about the potential for the tingling in her hands and feet that she probably will get. Val will take the predisone tonight at 9 and 3 am (they will set the alarm). I also verbally said to her that she can do this she has the strength. She only replies oh Salynn. She needs to hear positive statements. Even the chemo nurse Tony encouraged them both today explaining she had some new tricks and changes up her sleeve to decrease all the side effects Val experienced with her first chemo. Off to chemo #2 Jan 9 Love and prayers to Val for a better experience on round two. Love and prayers to Val Salynn

January 8, 2009

I spoke with Dad this morning at 9:45a.m. He said that Val had a good night. She felt like watching a little television last night. She took some pain medicine that helped reduce the stomach cramping. This morning she took a shower without much help from Dad. When she got out of the shower she tried on some cloths by herself! She did not feel like eating much this morning, but she is drinking the odwalla organic vitamin induced juice smoothies (a little advertising) that Denise found for her. The nurse had already been there this morning to take a blood sample.
Dad was very upbeat about how well Val was feeling. He was well rested himself. I will be in Barre tomorrow morning at 7:30 a.m. to drive them to Val's second chemo treatment.
On Tuesday Val showed Dad and I that her hair was starting to fall out. Denise is going to buy her a few head scarfs today.
I know everyone is praying for a successful treatment tomorrow and for Val to win this battle that she is fighting. Thank-you for all of your prayers and support.

Love,
Baine

January 7th

I spoke with Dad on the phone this morning.
Val went for her blood transfusion yesterday at the Barre Hospital.
She got 2 pints of blood and an additional clear solution of electrolytes in parallel.
Baine drove them home from the Hospital around 3:30 and Val seemed pretty well and
was able to walk to the couch by herself and rest there.
Val did not sleep well again last night so is still quite tired today.
Val feels quite a bit of new pain in her abdomen today and will try and rest as much as she can.
The home nurse is there this morning to take blood.
The nurse is scheduled to come tomorrow as well. Then the Chemo appointment is on Friday.
Love and Prayers for Val!!
Ryan

Monday Jan.5, 09 10:00pm I spoke to Dad this noon time. He said Val had had a shower and walked only to and from the bathroom and to the chair beside her bed. Both are scared of the right foot pain which is limiting them pushing to walk any further today. He measured the right upper thigh to be 2 inches bigger than the left. The right foot arch area measured one inch bigger than the left. He said his call to the chemo nurse was specifically to ask if they should be concerned with this right leg pain. I never found out tonight if he got his answer. I tried to reassure him that Val is protected against a stroke or a traveling blood clot given the greenfield filter and the coumadin. I thought the question should really be is there any reason she should be "developing" new clots...that would be my concern if they say yes maybe a new tumor is pressing on her vascular system again. Let's hope not. Val ate well french toast for breakfast, chicken salad for lunch with no signs of nausea, vomiting, diarrhea today that I am aware of. The visiting nurse has been coming every day. Today blood was drawn ( I am not sure if Ettaback office requested this as it was scheduled for Tues and Thurs ). It revealed a 7 hemoglobin. Dad will take Val up to CVH in Berlin at 8 am tomorrow for two more pints of blood. We were thinking maybe while she is there is it possible to get the IV meds to battle the vomiting and nausea that she experienced the first time? Denise has been speaking to Dr. Caplan office in montpelier. This is the naturapathic doctor who will help her with her chemo side effects and nutrition. They are only able to do a phone consult this week and will schedule an appointment with Val near the end of Jan. before chemo #3 (21 day s after Jan 9, 09.) Love and prayers to Val. Salynn

Dec.4 7:30pm Dad has adopted our notebook version of writing everything Val eats and drinks, meds and symptoms, down daily. He makes a daily am call to the chemo nurse Tony or Jamie who work directly for Dr. Ettaback to discuss her status. Val's day was OK. Her right foot and calf remain painful at rest and with walking. It measured 17cm the first day, and has gone down to 16.5 compared to 14cm girth of the left calf. The nurse did not recommend another Doppler or feel this was anything to be worried about. My personal opinion is that it could be a new DVT ( why would one develop would be a mystery) or a shift of the one that was already there. Remember, she has the greenfield filter to catch any traveling clots, she remains on 2.5 (mg or pills I did not clarify this with Dad) down from 3 of her coumadin (warafin). So from a treatment standpoint, all her DVT's ARE being treated. Val doesn't like wearing the compression stocking. Transfusions have a side effect list of 12 things: swelling, nausea and vomiting are on that list. Since,Jan 1 Thursday, the visiting nurse has been coming every day. Tony the chemo nurse said blood will be drawn on Tuesday and Thursday of this week. Her blood level is an 8 (hemoglobin that is) since the transfusion. Val still doesn't not have the strength we want her to have and remains in her weakened state. When Dad mentioned that he felt Val might not be ready for chemo on Friday Jan 9, Tony the nurse insinuated that the doctor doesn't really like to deviate from the 21 day cycle. The next question to the nurse has to be what medical guidelines are they using to determine what makes her "ready" or not. Is it the blood levels or her overall weakened state? Val has little desire to eat and drink still. She had pasta with cheese and butter for lunch and salmon with cream cheese for dinner with choc. milk. She is a tough patient if you all can believe it... a little ornery...she gives Dad more resistance than she ever gives me. She was getting the abdominal cramps from too much constipation medicine which has been dropped back;the 2 senna pills. She still takes pill that dissolves on her tongue for nausea. Since she gets EVERY side effect that could possibly happen I reminded Dad that the tingling in her hands and feet that come with chemo can be avoided with the Vit B 12. Val was never one to take vitamins so she hasn't been convinced yet (and resists us) that she should be taking the B12, calcium, D, and multivitamins that Alison worked so hard to get for her in an easy to swallow or dissolvable form. She still says that the pills get stuck in the back of her throat. We showed Dad how to dissolve some of them in her tea with honey, but not all are able to be dissolved without tasting horrible. They are easy to swallow and we are trying to get Dad to just present them with her daily meal at lunch time. I hope this answers all the questions on the comment section. All input is very important to us. Keep them coming! We all want Val to have the best outcome possible with the least amount of side effects.
Love and prayers to Val Salynn

January 3, 2009: By Alison: Yesterday, Friday 1/2, Val had a rough day. She seems to get every side affect that there is from all the treatments. She had a lot of vomiting all day on Friday, a side affect of the transfusion. She also has a swollen leg, her calf area. Also from the transfusion. So she did not eat on Friday until the evening, some tea and broth.

Today, Saturday, she had a much better day. Dad had her walk in the hall up and back twice but she complained that her leg hurt where the swelling was and so Dad brought her back to bed. She has stopped vomiting but she does have bad cramps when she goes to the bathroom, painful per Val. She did eat today and seems to be regaining her strength. Now that her blood is up to an 8, as she continues to keep her food down, hopefully she will start to get her strength back. The visiting nurse was there today, Rudy was not sure what she did so I'm not sure if she tested the blood again today or not. I did not want to call Dad again tonight so the afternoon update was from Rudy. I will call Dad tomorrow and encourage him to try and bring Val downstairs if he thinks she is strong enough. It would be good to give her a change of scenery and do more walking. Love and prayers, Alison

Jan. 1, 09 Last night Val's blood level was a 4 and went up to a 7 after two liters of blood transfusion. Normal we think is a 14. Coming home was difficult. She made it into the jewelry room then rested. Then into the living room then rested. Then up the stairs with Dad and Baine's help. She vomited at the top of the stairs then rested. She eventually made it back to bed. Denise washed her up, changed her clothes and freshened her up with lip gloss and lotion before tucking both Dad and Val into bed at 11:30. Dad and Val made it up to the new year against all odds this year. Dad hasn't seen the 11:30 in years! Love and prayers to Val. Salynn