Monday, June 29, 2009

Tuesday June 29, 09 eleven days past last chemo
Val continues to read her mail so if anyone wants to send her a note she loves to hear from you.
Baine helped Dad wash the windows by Val's hospital bed so her view of the outdoors is much clearer. She sees Fuller on the lawn and the humming birds at her feeder.

We were proud of Val as she was not in the hospital nor did she need a blood transfusion since the last two chemo's. (Yea!! That was actually great) She continues to run the low grade fever on and off, but until it reaches 100.5 they don't even count it as a fever. The fever is either unexplainable or the fact that she did come back positive for a staph infection at the chest tube wound site, but it was not MRSA.

It has been a rough eleven days with that gross feeling in her mouth returning and causing a lack of appetite along with more pain and more fatigue. This past week Dad brought her breakfast to her in the bedroom and sometimes lunch too. However, Val went downstairs every day to the hospital bed so her parents didn't have to climb the stairs to see her. I consider this a great feat also as she continues to do the stairs! That is good for her lung health and her overall strength. Dad stated today that she is a little stronger as she needs less help rising from the toilet.

Last week Thursday, Val made the decision to change her primary care physician to Dr. Nicole Belinger, a physician in Barre. Val had to get dressed and go out for an appointment which was exhausting in itself. However, to both her and Dad's surprise was an positive, compassionate, thorough physical. This doctor had definately read all of Val's reports and knew what she had been through thus far. This doctor will coordinate with Dr Eltabacht all the medicines and treatments. This way if Val needs or wants to see a doctor she can go in Barre instead of all the way to Burlington. We are happy for Val for standing up for herself and getting a new MD that she really liked and one whom she can gain new trust in.

Val is scheduled to have her next chemo on July 10 and July 17. If she delays this chemo, Dad and I could take her to Maine that weekend or the weekend of Aug 1. First and foremost, Val has to WANT to do this for herself, this is NOT for me, Dad or any of her friends. If she wants this, Dad and I will make it happen. There are so many factors, her strength, her need for oxygen, her medications, her need for a rental wheelchair, her infection, her visiting nurse schedule, etc., etc., a big list, but one that could definitely be accomplished. Val will make the decision herself.

Love and prayers to Val always.........Salynn
(apologies to all who follow the blog as I was not near a computer for a week. If anyone needs a phone update please feel free to call me on my cell phone at any time 908-337-2983)

Friday, June 19, 2009

Friday June 19, 09 Second cycle of Gemzar and Docetaxel

Val was feeling well last night and into today as she began the pre treatment steroids at dinner last night. I will attest for her that she is eating much better; french toast for breakfast, egg salad sandwich for lunch with a big peanut butter cookie, and pasta with sauce for dinner with garlic bread. As a treat, I made some chocolate chip cookies and bought some strawberry sorbet for dessert.

Val received both chemo drugs at 80% today. This is considered her second cycle. The treatments are every 21 days one Friday followed by the next Friday is considered one cycle. We asked if we delayed the next treatment by one or two weeks to get her to Maine (if she wants to go for a long weekend) how would that impact her treatment. He said that would be fine and wouldn't hurt Val. The doctor said a repeat CAT scan would be done after cycle number 3 or 4. He also said that he won't change her type of chemo after the Cat scan results. This is the chemo she will continue to receive.

The Doctor explained to Val, Dad and I that Val has a rare type of ovarian cancer that is resistant to chemo therapy. The chemo is not curative, but definitely slowing down the rate of cancer progression. The doctor said of course it is her choice to continue or not the chemo treatments. He instructed her to decide herself when the side effects of the chemo were too much. As of right, now she wants to continue.

Val's hemoglobin went from 6.7 to 9.4 (normal is 11.8-15.8). Val's RBC went from 2.23 to 3.02 (normal is 3.8- 5.2). Her platelets remain on the low side at 102 (normal is 150-400). The WBC went from a 4.0 to 7.1 (normal is 4-10). Her neutraphil count is 3.19 ( normal is 1.8-7.8).
Val received a shot to day which will boost her RBC production over the next 2-3 weeks called Aranesp (darbepoetin alfa). The VNA nurse will come tomorrow on Saturday to give her the Neulasta shot which will boost her WBC count over the next week. The unexplainable low grade fever Val has been running remains unexplainable or could be just her body response to the fight between the cancer and chemo.

It has been a special weekend between Baine's oldest son Cote graduating High School on Thursday night to helping Val and Dad at chemo and at home.
Love and Prayers to Val always.....Salynn

Thursday, June 18, 2009

Thursday June 18th

I spoke with Dad this morning. The visiting nurse was at the house yesterday to take blood and the red blood cell count was down to 6.8. Val had to go to the hospital and received 2 pints of blood. They were released and back home by around 7:30 or so last night. Val slept pretty well and felt pretty good today. I did not get an update on the fever she had been having the last couple of days so hopefully that was gone as well. Dad was helping her get a shower this morning so that is a good sign that her energy was ok. Val has been eating small meals and since her energy is good hopefully that will continue. Salynn is flying up today to help with the planned trip to Burlington tomorrow for chemo. We are all praying it goes well as it is a large dose that is planned.
Love and Prayers for VAl !!!


Sunday, June 14, 2009

Sunday June 14, 09 Two days past chemo #??10 ( I actually forget)

Val did not receive RBC on Friday as her count went from 8 to 8.8 (normal is 12-14). She did receive the gemzar chemo at 20% less than the 100% she got last time because she is soooo weak. She was the weakest ever at chemo and basically slept through the chemo. She didn't really remember the event at all that much the next morning on Saturday. Her next chemo is scheduled for this coming Friday, June 19 where she will receive the Gemzar and the Docetaxol chemo. She will receive a special shot Saturday after this chemo which will help to maintain her WBC (white blood cell) count high. We hope to keep her out of the hospital free from infections which comes from the low WBC.

Dad thinks Val received some steroids on Friday at chemo because she seemed to bounce back by Saturday afternoon and have almost a complete 360 turn around. By dinner she was feeling much better, more alert and asking to see the chinese menu for take out. They sat at the dinner table for dinner together which hasn't happened in a long time. Val continues to come downstairs daily and use her hospital bed. She is able to see Fuller outside, see Dad getting the mail, watch humming birds at the feeder at her window and watch Dad in the kitchen. Some vantage point!! Val's oxygen was increased from 1.5 to 2% oxygen as of Friday also. This she uses constantly.

Val's fentanly pain patch was increased from 75 to 100 as of last Friday. Val was able to go 24 hours before needing one Vicoden pain pill. Mary the VNA (visiting nurse association) nurse recommended changing this patch every two days instead of every three days for better pain control.
Love and Prayers to Val always....Salynn

Thursday, June 11, 2009

June 11, 09 Thursday
Val had enough energy for Cindy Cato to come up with a woman to give Val a manicure and pedicure today! Cindy says Val is in good positive spirits and is mentally ready for chemo tomorrow on Friday. Dad went to the medicine shop to get some medications and to the grocery store while Cindy was there.

Val's VNA Mary has been incontact with Tony the chemo nurse. Tony and Eltaback are aware of Val's weakness and lack of strength at this time. Her RBC remains at 8 which it was when she was in the hospital . Normal is 14. (if a 7 she would be a candidate for a transfusion). Tony has Val scheduled for a transfusion first tomorrow, before receiving the Genzar chemo drug. This will be a long day at the MD office as the transfusion takes several hours itself. Dad won't leave for lunch as he used to because Val is too fragile medically and he is fearful of an adverse negative reaction to occur to Val while receiving the chemo drugs.

Love and prayers to Val always....Salynn

Tuesday, June 9, 2009

Tuesday June 9, 09
Val has been gaining strength and eating a little bit more every day. She says things don't taste gross and that her taste buds are a little less sensitive. It took all her strength to do, but she has walked downstairs these past two days to spend the days in her hospital bed which is in the living room now. She walked slowly back up each night to reach the top of the stairs where dad has placed a chair for her to rest. She remains on 1.5% oxygen, and has had no fever. From the hospital bed, Val can see Fuller when he goes outside, see the TV, and see dad in the kitchen. She is still on the fentanly patch which may be increased from the current 75 to 100 for pain and takes several vicoden with tylenol to keep her pain level at a 4 on a 1-10 scale throughout the day. Dad has been changing the chest tube wound daily and says that it looks a lot better and that Val reports no pain from that location. Her coumadin level remains high, but she doesn't complain of her bloody nose. As a matter of fact , Val is not a complainer at all. If you were at her bedside it would appear that she was resting comfortably with no pain. When actually it is when you ask her to specifically let you know on the 1-10 scale that you realize wow this woman is suffering.

Lea's cousin Bella who is single and 90 years old is not well in Barre. Val made it in the car yesterday and into her house for a 15 minute visit of this special woman. Let's keep Bella in our prayers as she is alone and suffering herself.

May Val continue to gain strength everyday. Love and Prayers always....Salynn

Thursday, June 4, 2009

Thursday June 4, 09 Day #14 past chemo #10
The NVA physical therapist who is a wound specialist came today to treat the wound. She cleaned it with a local antiseptic and then packed it with gauze soaked with antibiotic cream. She taught Dad how to do the wound treatment and what to look for if it gets worse or doesn't respond. She said she would change treatments if this happens. I feel so much better. The cancer may be out of our control, but an infection and a non healing wound is something we surely can treat wisely.

Mary the VNA nurse that Dad likesso mch is coming tomorrow. He already has a list of questions for her. She seems to bring him peace with her compassionate advice. She helped him the other day on the telephone trying to straighten out all of Val's pills she is taking.

I guess our/my biggest concern is Val's lack of intact of food and fluids. She knows she should be eating and drinking to gain strength and fight off further infection, but she just can't. She barely intakes 8 ounces of drinkable fluid a day ( water, Ensure, drinkable yogurts).

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

Wednesday, June 3, 2009

Wednesday June 3, 09 Day n13 from Chemo #10
The hospital bed was delivered yesterday. Val has remained upstairs so she hasn't used it yet. She continues to eat very little. She has been drinking the Ensure vanilla shakes, but really nothing else: the food either looks bad or tastes bad or she doesn't like the chewing part.

The wound specialist from the VNA will come tomorrow to give us advice on how to change the treatment of the wound.

Mary the new visiting nurse is available M-W-F and a woman named Dorla from the VNA were veryhelpful to Dad on the phone today ccoridinating medications. Val's blood was drawn yesterday. The RBC level went from 8.2 to 8.7. The WBC count went from 13000 to 17000. The coumadin level went from 53 to 74. The ANF in the hospital was .06 and went up to 1.88 at her discharge from the hospital. Val's Fentanyl patch will be increased from 50 to 75 so she can decrease the oral vicoden from 8 down to 4-6 pills per day. Perhaps it is the chemo giving Val such a bad taste in her mouth and not allowing her to eat.

Today was a good day for Dad in the fact that all the people he spoke to on the phone from the nurse Amy at Eltabahk office, to Carrie the case manager at Blue Cross Blue sheild, to Mary and Dorla the VNA nurses.....they were all on his side making his life easier and helping him. Almost like finally people are really coordinating Val's care for Dad instead of Dad having to do it all alone.
Love and prayers to Val ....Salynn

Monday, June 1, 2009

Monday June 1, 09
Val was discharged from the hospital today and got home around 2:30. She rested all day downstairs and then went two steps at a time up to her bed and, she remains on 1.5-2 % oxygen. She will take an oral antibiotic pill beginning tomorrow. The chest wound hole looks bigger and deeper to Dad tonight. It is healing from the inside out. We are treating it with normal saline rinse and triple antibiotic cream. We will cover it with tegaderm during her shower. If any nurses or anyone has any ideas on how best to promote this healing please comment to us thanks. Her sources of infection we feel were coming from 4 areas: the open sores on her tongue, her sore throat she had, the chest tube hole/wound and the UTI.

Val's red blood cell count remains low at 8.2 normal low range is 10. Val's white blood cell count is up to 13 (13,000) with normal range 4000-10,000. As much as we are glad she is home, we pray she gains strength daily through rest and eating.
Love and prqyers to Val always ......Salynn