Nan Mustard's Recovery

This blog is a record of Erin (Nan) Mustard's recovery.

Friday, August 31, 2007

Good news

Dear Family and Friends,
This afternoon at 4 we met with Dr. Melynk in Antioch. Nan was feeling rough for reasons I will explain later. Dr. M came right to the point. He showed Nan the PET scans which sort of overwhelmed her with the magnitude of the existing diease. There is a lot of tumor mass. However he told us that some of the tumors were essentially dead, turned to fluid. The bottom line is this, there has been no change in tumor size in the past 3 weeks, since the last CT scan. That my friends is very good news and it slowly sank in for Nan and me both as we sat there. I explored if there was anything that could be done to try to solve the blockage but he thinks the tumor mass has flattened the bowels to the point where they are blocked. He was unwilling to consider a lower GI test or a upper GI, he felt it was not worth the discomfort Nan would experience.
Nan went to the doctors today feeling rough due to the fact that we were unable to pump her stomach out. Apria arrived with the new improved suction pump which pumps continuously. Unfortunately it takes some time to get started and we were out of time needing to leave for the doctor and they had taken away the pump were were used to so Nan had to live with a belly full of fluids. It made the trip to and from the doctor rough and she was on the edge of nausea the entire time. When we got home we started the pump and it immediatelly started pumping out fluid and so far has pulled about 300 ccs. Within a few minutes Nan was on the phone sharing her good news with loved ones in Texas and then headed to sleep. She has been asleep now for hours on her new mattress Apria brought at the same time.
We both woke this morning with great trepidation and concern. We had no idea what the report would reveal and could only hope for the best. The actual report is very sobering due to the amount of the disease but the fact that for the last 3 weeks no tumor progression has taken place is very important.
So tonight we are home resting up, thanking the Lord for AMN and its positive effects and certainly thanking you for your prayers and kind thoughts in Nan's behalf. Marilyn has gone to see friends in Sacramento so its just Nan and me this weekend. Once again we have lots to be thankful for and certainly lots to seek the Lord's help with.
This evening I have come down with a summer cold so I'm sitting in the recliner with a mask on and Nan is enjoying her new hospital bed mattress and has decided to stay downstairs tonight. right now we have the suction system turned off since Nan just took pills at 9:30 and we realy don't want to pump the meds right back out after she has taken them so we wait as long as possible, up to three hours if we can and at least 1 hour at the least.
So I wrap it up now, I have every med I can find in the house, am gargling and need to push some orange juice well that is except I don't have any orange juice in the house.
We send our love to each and every one of you.


tim and nan

Thursday, August 30, 2007

Timothy and Keanna visit Grammy!

Dear Family and Friends,

I wish you could have joined us for the very special afternoon we had today. Jason and Julie brought Timothy over for a special visit with Grammy. Nan loved seeing him again and was amazed at how much he has grown since she saw him last. In spite of the heat, about 105 here today, they drove over leaving behind their 70 degree weather behind to come visit. Arriving mid afternoon Timothy got to hold Grammy, Pappa, got a kiss from Keanna, got to hold Marilyn and Nikki and of course Julie cared for him changing him when he needed and getting his bottle ready too. In spite of the heat our family room stayed comfortable and we enjoyed our time together. Nan had come down early this morning seeking a more comfortable place to be due to intense pain in her stomach and back. The recliner with a soft pillow seems to be the place these days. We worked with the pump but never really seemed to get all the fluids out we would have liked to. Terry came this afternoon and assessed the situation and ordered a new pump that is more gentle and continous than the primitive one we have. She was not intimidated by the poor service at Apria and got to a manager and got things cared for. Nan has had a couple sessions of sleep today of an hour or two each but has also suffered a great deal with pain and discomfort. Having Timothy come visit reminds Nan of how much she wishes she was well and could be taking an active role in his care, that is where her heart is but her body won't cooperate right now. Keanna was on her way to dance class and put on her little dance outfit, so cute and she was so precious trying to find a bed from her doll toys that Timothy could fit into. She gave him some kisses on his cheek while he was sleeping. I think we have several photos to share with you of the afternoon. It was a lift for Nan who did not know Jason was coming until he called. I did know but did not want to ruin the surprise for Nan.
I ran some errands today, took papers back to social security, picked up meds, accifex that was $130 since insurance is just sure we should be using an over the counter med, of course in Nans condition with a burned out lining of her esophagus she needs the real thing. In the past I would not have even noticed the charge amount but today when I was scrambling for a card that could handle it I did notice and happily I found a card that welcomed the charge! Can I say thanks in a special way to the recovery fund helpers since I had to move money over to cover the debit card. Thanks so much for your help, today it was very real and worked at just the right time.
Tomorrow is when we see Dr. Melynk at 4 pm. We are both very unsure of what to expect. It will be something our subconscious deals with tonight and tomorrow until we hear the results.
Please keep Nan in your prayers tomorrow as she has to once again get into the car, then the wheel chair, the doctors office, the waiting room and finally the inner office, then back home.
We hope you enjoy the photos, Jason took some of Keanna planting a kiss on Timothy's cheek that will be cute too.
Love to all and thanks for the great messages you sent today. I spoke to our friend Bernice White who is currently residing in the Tracy Sutter Hospital with low blood pressure and heart rate. She is making progress and would appreciate our remembering her in our prayers. She is pictured last Sabbath afternoon as she and Lloyd visited here with us at our home. We need to remember Lloyd too as caregivers need support too!!!!

Good night friends and family,

tim and nan and marilyn

Wednesday, August 29, 2007

Calm day

Dear Friends and Family,

We are in the middle of a hot spell here in Discovery Bay, it was about 100 today but the systems are working so we were cool inside. Nan and I had a decent night with only a few times of being up to care for things. At 8:30 this morning she was awake and tired of trying to go back to sleep and ask to come down. So we made our way downstairs with Nan walking the first part to the stair chair, then riding down, then into the wheel chair for the ride to the recliner. She put the soft pillow behind her in the chair and stayed there until about an hour ago. She even found relative comfort in the process. There were moments of throwing up a bit and we have pumped many times today and used the syringe to push clear water into the tube and then pull back immediately to break the blockage. In that manner we have got things flowing several times where before we just gave up until it broke itself, sometimes hours later. Nan tried a bit or two of jello this morning and some ice water, took her pills and then settled in with some trusty reruns and marilyn by her side. She helped me early this morning get ready for the visit to the Social Security office and I left around 9. The interview went well and the lawyer had covered everything with me and we were totally prepared. We are told it will take about 2 to 3 months before any money might be granted. Then since I was next door to CostCo I zipped in and got some mochas by Starbucks, cheaper there than anywhere else. Then to Longs to turn in prescriptions, then to Burger King for Marilyn's lunch and then home to hook up with Art and Connie who had driven up from Gilroy for a visit. Connie made Nan's day by rubbing her feet. After we visited for awhile Art and Connie took me to lunch in Brentwood for some very decent Mexican food. Then back to say good bye to them and back to work at my desk. Nan slept for about 3 hours in the chair and finally woke up early evening. Her stomach hurts nearly all the time sometimes more and almost unbearable. She just tried the hospital bed but only stayed there a few minutes since it is less comfortable than you can believe. Now she is back in her chair to take her pills and then we will go up to try to rest.

We are both very aware that the time is passing slowly until Friday afternoon when we get the results of the PT scan. We really don't know what to expect and so the waiting.

I just spoke to Irene Wing, her procedure went as expected at UCSF and she is home and busy as usual. She will not find out results for up to 10 days so she too is waiting. I know she appreciates our prayers and concern for her.

Late this afternoon the dogs went crazy, someone was at the door, it was a flower delivery person with a wonderful bouquet of flowers in a cute basket. See photo. Thank you Dolly, Nan was thrilled with them and had us put them in a place where she looks directly at them. Thank you so much! And thank you for your emails of hope and courage.

I think it is time to get busy with TPN, Atavan, pumping, transport etc. Having the ramps sure makes it easier to get about the house, thanks first Art and then Bob for sharing ramps with us.

Nan got to talk to Sharon and Dana today, Dana's husband Ronnie has had knee surgery and is slowly recovering in lots of pain, Dana took a fall on a knee she had surgery on, not good at all. Sharon is busy as usual helping people young and old.

Thank you Art and Connie for the visit today, for lunch and for your constant support and encouragement to us both. How blessed we are to have friends and family, just possibly the best friends and family in the world!

Please pray that Nan can feel better. Also pray that the lovely people at Social Security will get off the dime and process our request for disability for Nan.

love to each and every one of you,

tim and nan and marilyn

Tuesday, August 28, 2007

One Heroic Lady

Dear Family and Friends,
Its 11:10 now and this has been a busy day. We had a decent night and used the pump to keep Nan comfortable. At 4 am this morning the alarm went off signalling it was time to turn off the TPN, 6 hours had to pass before the PET scan. Nan had no desire to get out of bed and face the hour ride over to Walnut Creek, endure the IV stick, spend the hour in the recliner soaking in the special IV and then the 15 minutes in the machine itself.
We left a tiny bit late with medicines on board on ice, TPN on ice as well, pillows, ice water. Nan decided to ride in the front seat with it reclined. We placed a large pillow under her feet and she managed to find a fairly comfortable place. We drove to Walnut Creek having only one slow patch of traffic. We parked, loaded Nan into the wheel chair and went to Pacific Imaging. They took her in immediatelly and we gave her Adavan to help her relax as she waited in the recliner. Then they came and got me and we moved her to the PET scanner, got her in place on the tiny very flat surface, her arms above her head and for 15 minutes she did not move. Then it was over, I have spent minutes waiting dozens and dozens of times and it never gets easier. I spent the minutes in prayer for Irene who was in SF having a biopsy, for the family who just lost their mother in Tracy and for precious Nan. Exactly 15 minutes later the tech came to ask me to help her back into the wheel chair and we were on our way. nan's only request was for ice water so we stopped at Burger King in Pittsburg, then the oncologist office in Antioch to pick up a letter for Social Security and a prescription of 80mg oxycotin. Then home. nan was so glad to get home and we took her directly up to her bed, gave her Adavan and she went to sleep. She was able to sleep until Terry came to collect new urine samples as a follow up and then went back to sleep. At 6 Nikki and Keanna came to make dinner and to visit Nan. She enjoyed a picture Keanna had made for her. Dinner was great and about 8 they left to get her to bed. Nan was awake some during the evening but is now fast asleep again.
Even though today would have been a tough emotional day for a very healthy person Nan took it on and handled every part of it without complaining. She once again demonstrated the amazing stuff she has for a back bone. What a lady, Marilyn and I are both just amazed at her courage.
Now we wait until Friday afternoon at 4 pm when we meet with the doctor to get results. There is not much harder than waiting to hear news that is so important and vital. I have gone through this process many many times and every time I am nearly a wreck by the time the doctor speaks the words, stable, growth, shrinkage, or a mix of all three.
Art and Connie got home safely and we hope to see them tomorrow afternoon. In the morning I have an appointment with the Social Security office in Antioch. They want to see nan but I have let them know she can't come as she is too ill. I would appreciate your prayers over the visit as we could sure use the funds that we are entitled to by way of disability.

So good night my friend, please keep Nan in your prayers and in your hearts. We both want to thank those who made the check that arrived yesterday for nan's recovery fund possible. Thank you very much for your help. It will be used as carefully as possible, this time groceries, fuel and a new bunch of flowers for Nan. I try to get her flowers fairly often at Safeway and her roses are just petals on the floor now. Thank you very much for your help and to Bob Miller, treasurer of the Tracy SDA Church for his help in the recovery process.


tim and nan and marilyn

Monday, August 27, 2007

Holding her own............

Dear Ones,
Quick blog tonight, time to go to bed, where does the evening go? mary came to spend time with nan early this evening and nan always appreciates that. What a precious friend she is to both of us.
I drove to the valley today for an appraisal, then to Brentwood for meds and to deliver an appraisal, then home to see the girls, then back to Brentwood for three photos of houses and Kentucky Fried for marilyn's dinner, then home to enjoy mary and have some cherrios and prepare her TPN, Adavan, pump her tummy and now to head to bed.

Tomorrow we have to be up and out around 8:15 to 8:30 so we can make the PET scan in Walnut Creek through traffic. Then bring our precious patient home to rest for awhile. Nikki and Keanna are coming tomorrow evening for dinner, something special to look forward to.

Nan has had a day of controlled pain, Terry came early afternoon for blood draw and helped us learn how to clear the line for pumping the stomach. We got word today that the blood cultures were negative, nothing growing but there were bugs in the urine, always are so we took the last antibiotic this evening and we'll see what happens with fevers before we try other antibiotics.

Please remember Nan tomorrow as she has to endure a drive of an hour each way and about 1/2 in the PET machine. it will not be pleasant at all. It will tell us something about the state of the tumors at this point in time, vital information. If all goes well.

Please keep nan in your heart and prayers, she is having a very rough patch in her life right now with very little fun.


tim and nan and marilyn

Sunday, August 26, 2007

Calm evening

Dear Family and Friends,
How can I explain the last 24 hours? Well sleepy would be a good start. Last evening Nan fell asleep in the recliner using a combination of pillows for comfort. With only occassional waking moments she made it through the night. At around 2 am I went to bed in the hospital bed in the family room and only got up when she needed something during the night. We didn't really wake until about 9 this morning. Then I asked her if she would consider going out to the driveway, getting some air and walking with the walker. She consented and so we did just that. She walked very well and then we came back in with fresh air in our lungs. I then took her upstairs where she fell asleep until 4:30 this afternoon. She woke for a few minutes and then back to sleep until mid evening and I think she is asleep again now. The back pain comes and goes but is always there to some extent. This evening she was trying a heating pad to see if she could get relief that way. When I checked her temp at 4:30 it was 97.6, a nice change. Marilyn has been an angel remembering when her antibiotics are needed, helping Nan with changing the bandage on her tummy and helping with ice water, pillows and anything else she needed.
Marilyn has been upstairs in the recliner for hours this afternoon and evening sitting with nan as she rests.
I've been working, trying to get some appraisals out the door and have had some success. Its been sort of tough to keep the emotions in order but after she woke up feeling better at 4:30 I felt better. I've got to talk to Art several times today, He and Connie drive home to Gilroy tomorrow and it will be nice to have them closer.
Irene Wing has let us know that she is having a biopsy on Tuesday at UCSF. She certainly needs our prayers of support seeking God to give her healing, calm and peace. Although the biopsy only takes a few minutes she has to wait for hours afterwards just in case! So she will have a long day. Tuesday we too will have a long day. Nan is to have a PET scan in Walnut Creek, an hour trip from our home. She has to stop the TPN 6 hours before the scan and can only drink water. She is not looking forward to it at all but we do need to know what it can tell us.
Pam needs our prayers too, she came down with the flu over the weekend and has spent some quality time in bed trying to recover.
We have received word that our long time friend and fellow appraiser Mimi has lost her battle with throat cancer over the weekend. So our prayers go to her family as they cope with this incredible loss.
Oh friends and family, how we look forward to being with Jesus someday. Sometimes life does not make much sense these days.
Please pray for Nan's back and stomach and the pain that is there. Pray that God will do for her what He knows is best.


tim and nan and marilyn

Saturday, August 25, 2007

Nan rests after a day of rest, a day with friends

Dear Family and Friends,

Its about 10 and Nan has been napping in her chair for a couple hours at least with an occassional moment of waking. She has taken her pills for the night and will get her next antibiotic at about midnight. Marilyn and I are watching some TV and enjoying a time when Nan is not hurting .
Last night was the worst night of pain she has ever experienced. Shortly after Nikki and Keanna went home suddenly the pain hit and it continued all night. It was in a specific place in her back and extended through her stomach. No matter what pain meds we used the pain came through. We finally managed an hour or two of sleep and then more pain meds, then back to sleep for a few more minutes. We were up many times during the night but got through it finally. Gradually this morning the extreme pain began to subside and although she had a rough rough day she is able to sleep tonight. What is causing the extreme pain, frankly I don't know and I pondered every time I was during the night if I should be driving her to ER.
Marilyn has been an angel today sitting by her side getting her ice water, anything she needed, more pillows, dumping bags and keeping her comfortable.
I met Bob and Carrol, the Guptils and the Whites at Olive Garden in Tracy and enjoyed a quiet lunch with friends, then we all traveled back here to see Nan. I had text messaged Marilyn to see if Nan was up to company and she said yes. I also brought Marilyn some yummy food from Olive Garden. So our dear friends were here for about an hour or so, Bob showed me how to make the bed up in the van for Nan in case she cannot handle sitting in the front seat. About an hour after our friends left the door bell rang and it was George and Yvonne Miller from Tracy, It was great to see them again and to catch up with these special people. nan was awake part of the time and napped part of the time. So due to caring friends we have had a pretty good day. nan is weak tonight, worn out and finally resting quietly.
So goes our life, we are working our way through an experience no one would seek and yet we can't avoid. Every day, every moment, every chance to look again into her beautiful blues is a precious opportunity.
when you consider our last 11 years, 5 surgeries, numerous drug therapies, dozens of flights to medical centers, hundreds of nights spend in rooms away from home and yet the thrill of enjoying Keanna and Timothy, of seeing our children move into their adult lives, getting married, completing their education, Dollywood, time spent with family and friends many many times. Yes it has been worth it all and brave courageous Nan has made it all happen with her unbeatable spirit and faith, her love of life and people.
thank you friends for visiting today, it was great to see you.
So we send our love to each of you this evening, Nan needs our prayers so much. We seek God's blessings, only He knows what is to come tomorrow and beyond.


tim and nan and marilyn

Friday, August 24, 2007

Joy then pain

Dear Friends and Family,

This evening Nikki and Keanna came to dinner. Marilyn had cooked fresh vegetables and Nikki made mac and cheese, it was great eating. Unfortunately Nan was not up to trying to eat yet in spite of more action in the colostomy bag, about 150 ccs. Nan enjoyed the time with Keanna and Nikki until they had to head home about 7:45 so Keanna can get her rest. This has been a tough week at their house with Steve working long hot hours at a construction job since appraising is so slow right now. Keanna has been going to school at 7 in the morning so Steve can get to work on time so she has had a week of long days. She was in fine form this evening and asked that I dine at her little table with her which I was happy to do. How fun!

Our night went pretty well and I did not roll out until about 8. Then I decided to do a good thing and took a walk to the park with the doggies. Then when Nan woke later we got her fresh ice water, gave her her antibiotic and then brought her down stairs. She was in her recliner for hours and finally decided it was time to nap so Adavan induced sleep took over, she got several hours of rest. This afternoon I was spinning my wheels at my desk so I grabbed a couple appointments in Oakland and San Leandro, drove over quickly to see them and then headed back home. Amazingly traffic was light which was a pleasant surprise. Talking to Art and Pam helped me get back with less stress.

Marilyn has been an angel all day with unloading the dishwasher, cooking up the veges and caring for Nan so carefully all day. Its hard to think about a time when she has to go home but we totally understand that she has a wonderful family with a rapidly growing little guy to care for. We are very thankful to God for Marilyn's being with us at this point in time.

For most of the day Nan had a good day but then late this evening suddenly Nan got hit with a terrible pain in her right side on her back just above the nephrostomy insertion point. We gave dialautid twice and now she has the good effects of Adavan, finally she is sleeping. I've never seen her in more pain than tonight, one feels so helpless watching your lover in such gut wrenching pain.

Now we have her on some extra pillows in hopes that she will find a comfortable place. I find myself having some tiny pains too, I think just stress pains.

Pam is hoping to be able to visit tomorrow and we will enjoy seeing her again. Today she had both the police and fire department there at her school to assist with a student that became ill and needed help. Never a dull moment at Pam's school.

So please pray that God will bless Nan with rest tonight and pain relief.

We send our love and hope that your weekend will include a blessed worship day and much family time. We especially remember our friend Irene who is coping with some new growth in her battle with GIST. Please remember her in prayer. She is a dear friend.


tim and nan and marilyn

Thursday, August 23, 2007

Antibiotics start at 10 pm, temp normal at 2 am.

Dear Family and Friends,
My what a difference a day can make. The delivery person arrived late last night with the Zozan and we started it immediatelly. Takes about 1/2 hour to administer, is prepared in a little bottle like a small baby bottle with a balloon inside, when the balloon has reduced to nothing then the drug is in. We hook it up to one of the PICC line connections after flushing with a saline. Very slick and Nan responded after the first dose. We have had little or no fevers all day today and every time I have taken her temp she is normal, what a blessing and answer to fervent prayers by you and by us. As a result of the temp becoming normal nan has felt much better today. She and Marilyn have spent most of the day upstairs in the cool bedroom and napped, watched judge shows and new york cop shows. Late this afternoon nan decided to come down and is enjoying being in her chair now.
This morning a new wound care nurse arrived. While Nan misses Julie a lot we are aware how much she is in demand by people with new ostomies. This nurse was good, careful, knowledgeable and kind. She changed the tummy bandage over the fistula and then did the nephrostomy covers, those are very painful to remove as they are strong and secure and hate to come lose. Yet she did a good job with minimum of pain to Nan. I always hold Nan's hand during those processes, also keep an eye on what they are doing to make sure nothing is kinked, today she started one on backwards, saw my face and took it off and did it right.
For those of you that are aware of how challenging our finances are I would just like to say that several checks came in the mail today, just in time because the business account was down to $42 dollars. Now payroll is assured and so is nan's car payment. AMEX called today to tell us that they were cancelling our account, an account we have had for over 15 years. I plead with them and they have given me until Sept 25 to find and pay $3,100 and I think that might be possible. They have always been very kind and helpful to us over the years. Of course over those years we have run hundreds of thousands of dollars through the card as it does our business expenses when it is working.
Yesterday was a tough day emotionally for all three of us and today has been easier and more positive. I do not mean to suggest that Nan is without pain, she is never without some pain but she has been less ill and more able to enjoy the day. When nan hurts I hurt and when she can relax and enjoy things a bit I tend to be able to do my work better and have less stress.
I especially appreciated hearing from Art today. he has been removing items that pidgeons have left on the roof at their home in Indio with a power washer, then he is going to install some torture devices that make landing painful for the lovely little birdies, flying rats is what many people see them as. Its been 110 or so in Indio so he has to work early and keep drinking fluids. He and Connie enjoy their time in Indio as they have many friends to chat with and lunch with while they are there. Sounds like a really nice place.
I only left the house to do local work today and pick up checks, yea I'll do that any day. But two addresses are so new that the GPS could not locate them and my map book didn't have them either. I'm working on a relocation report for a home of 4,000 sf, the rooms are huge and the home is very nice but the market for huge homes is very slow right now.
In response to urging by many of you I've tried to do some changing. I've had green beans, tomatoes, microwaved grillers without bread, salad, fruit today, feel good and I'm drinking water with a tiny bit of the lemon juice you all provided when you gave so many lemons to Nan last fall. She fell behind in using them so juiced them and we froze the juice. Now we are discovering that it makes a great drink. We are loving the tomatoes from Steve's garden and from Joyce and Glens garden, delicious eating.
The antibiotic nan is taking has to be given faithfully each 6 hours and needs to be set out from the frig 2 to 3 hours before to warm to room temperature. So we set the watch alarm during the night so we can keep on schedule. I'm happy to be up and give this helpful medicine. While the wound care nurse was here we decided to change the colostomy bag since Nan has to roll onto her sides for the work on her back and the bag can break when Nan rolls. To our delight we found it full. Another tiny step of progress.
Thank you for your emails today, I'm concerned about Roger and Carol, they are very busy, the weather is hot and they are losing clients who came to their area to be cooler than in Florida. I know God will watch over them but they are sure busy and work very hard.
So another day passes, this one a better and more hopeful one, we never know what to expect next so we just have to live it without great expectations. I am very thankful for my precious blue eyed lady to be feeling better tonight.

So we are sending our love to each of you and our gratitude.


tim and nan and marilyn

Wednesday, August 22, 2007

Rough day for Nan

Dear Friends and Family,
This has been a tough day for Nan. After getting her blood drawn at 11:30 or so last night she slept until 2 am when we pumped her stomach out and I met the courier at the door with the blood samples and received the TPN shipment meant for today. Then we slept until 6 am when we found Nan to have a 103.3 temperature. We did some ibuprofen and then went back to sleep waking at 8:45 or so. I slipped out and went down to work while Nan continued to rest. The next temp was 100.7. We brought her down stairs and she alternated between the recliner and the hospital bed and by mid afternoon when I left for Berkeley her temp was normal. However when I returned about 7 her temp was once again 103. I'm not sure what it is now. When she woke up I did the pump again and pulled out 600 cc's of fluid, that is a lot. Then she went back to sleep and has remained asleep the rest of the evening.
This morning I decided that we needed some immediate help with the fevers so called back and forth between Critical Care Home Health and the doctor's office until we finally got the word at 2:15 that Zozan, an antibiotic that has been used with Nan in the past was to be sent between 5 and 9 this evening. Well its 10 to nine right now and so far no delivery. I am so anxious to get the meds started as she usually responds quickly to them fever wise. Through it all she has been brave, stoic and wonderful. She is truly an amazing person.
Marilyn has been doing a great job of monitoring her condition and helping her move back and forth, get pillows, covers etc. We used ice packs this afternoon to get the temp down and thats when it went to normal for the first time in days but the ice packs seem so cruel, but Nan never complains, she just looks up and says, it that is what you think I need then go ahead. Wow that is tough sometimes.
I want to pay tribute to Marilyn, Dana, Barbara and Gerry and Jan for their extended stays helping Nan out and also those many hours spent by helpers from the church especially Sylvia. Because of these helpers and others Nan has been able to have a degree of normalcy and changing conversations. You have helped a great deal. She has been especially touched by visits in the hospital by George and Yvonne, Irene, Dolly, Pam, Wes and others.
To be honest there are days when we are somewhat lonely, we cannot go out to mingle, to eat, to travel and its different us to have to stay so close to home, yet often when we are lonely in comes a call or a card or an email which lifts away the curtains of gloom and reminds us of the face of God, caring, warm and touching.
Nan is in a very serious place right now, next Tuesday morning we will have a PET scan, a scan which measures tumor activity, it is important because it is one gauge of whether the AMN is working or not. Whether we keep that appointment in Walnut Creek depends of course on how Nan is feeling as the appointment looms.
I think we should also remember other GISTers, all watching their scans to see signs of change, to see signs of reoccurence, we are not alone. Thousands of people have GIST and wrestle with stability, growth, meds, etc. Our closest GIST friend is Irene and she too has to cope with scans and reports. Our prayers are with her too.

So we are still waiting for a delivery promised between 5 and 9 and now its 9:30 and I'm pacing the floors wondering if I should begin called or just be patient a bit more. You wait too long and you lose, you overreact and you hurt people who are doing their best.

I'm struck again with Terry being here last night at 11:30 drawing blood, so tired she could hardly stand up, having already worked 14 hours during the day. That dedication touches our hearts and helps us in this battle.

We so enjoyed our time with Joyce and Glen last night. I've had two whole tomatoes today and loved every bite of them, they are a huge hit at our house. Thanks so much and tonight Jam on bread, homemade jam, thanks Glen, you do a great job with the jam!

Please keep our dear feverish Nan in your prayers. Life has no joy or happiness for her these last few days, I seek God's blessings for better days and more joyous times soon.

Will you join me in praying yet again for our wonderful Nan?


tim and nan and marilyn

Tuesday, August 21, 2007

Conners visit lifts spirits

Dear Family and Friends,

Joyce and Glen Conner came at 6:45 this evening for a very nice and helpful visit. Nan enjoyed seeing them so much and so did I. We have known them and their family for many years dating back to our time in Tracy. We moved to Tracy in 1976 and they were already there. Joyce is a very outstanding English teacher and Glen is a crisis counselor amoung other things. He works three different jobs and has helped thousands of people over the years. They once moved to the tri cities area in Washington and we helped them move. Then when they were able to move back to Tracy we helped them make the move back gladly. They are precious people and nan was so happy to get the chance to see them. They are pretty well tied to home since they care for both of their mothers, 86 and 90 years old who live with them.
This morning Critical Care Home Health called to say Nan's white count was elevated 13.7. So we called the doctors who decided that blood cultures and urine tests could be taken here at home avoiding a hospital stay. Terry is yet to come to our home tonight to collect the blood and urine and its 10:40 now. I may have to drive the samples back to the hospital, not sure yet about that. She has had a very long day.
When I went out this afternoon to see a property in Oakland Nan and Marilyn took the big step to wash nan's hair. By the time they were finished Nan was totally worn out but she is happy that her hair is clean and washed. It looks great. Thanks to Marilyn for her wonderful and tender help.
Now its time to rest and soon we will be doing just that. No more action in the colostomy bag this day but lots of times of pumping out fluids. I wish the blockage would just let go completely and I hope it will soon.
One of the photos tonight is the beautiful flat of tomatoes Joyce and Glen brought from their garden, also handground peanut butter, jams and jellies, fruits, what what a treasure they brought to us. Thanks so much.
We appreciate your love and prayers. Thank you so much. This afternoon I had to raid the recovery fund, we have been saving it up for special needs and to day such needs arose. Thank you for your gifts which helped a great deal today.

love to all

tim and nan and marilyn
PS Yes I am aware that there are two identical photos of Starr, just don't know how to take them out once they are in. Enjoy!

Monday, August 20, 2007

Progressing slowly

Dear Family and Friends,

We have done well today. We had a good night with minimal waking moments. The nurse came this morning, took blood for CBC, took vitals, took temperature and it was about 100. Terry found no noises in her lungs, they sounded clear. What a relief as we had been concerned about lung issues.
Then Nan came downstairs and has been down all day alternating between the chair and the hospital bed. She has rested, changed her colostomy bag and had more action in the bag as well, all good news. She woke with a new pain in her side chest area but some dilautid helped solve that. She had a piece of watermellon tonight and paid the price of her stomach being upset with dealing with food. She has had a lot to drink today, ice water glass is in her hand most of the time. She is not feeling great but is doing better than a couple weeks ago. Right now she and Marilyn are watching the Closer and we will head to bed soon.
I have continued to work hard to get caught up and am making excellent progress on my work load. Nikki called this afternoon to say she was stuck on good old Vasco Road, rocks were dropped on the road and it made a mess out of traffic, a 15 min. drive became more than 1 hour. Jason called to say school has started and enrollment is up again with hopes for some more students yet. Timothy is doing well and is gaining rapidly thats to the great care and feeding of Jo and Jason. It is now unclear when the dedication is going to take place as Julie, his grandmother really would like to be there for it too. We will go if and when Nan feels up to it or not depending on whats right for her health.
Our life is pretty much a good routine right now with bedtime between now and 11, then sleep until about 6:30 or 7 for me and about 9:30 or 10 for Nan, then take pills, come downstairs, recliner chair, hospital bed, phone calls, TV shows, conversation with Marilyn or me. Nan is holding her own strength wise. We plan to get her outside in the cool air when we can find some and thanks to the ramps we can make the trip through the garage very easily.
We are grateful for calm days of progress. Is the AMN working? We are often asked that and we do not have an answer yet but I don't think it is hurting anything and it appears to be calming the tumors.
Thanks again to Pam for the massage and to Dolly for the visit and prayers. The dynamic changes when someone new comes in.

Please keep praying for God's blessings and healing.


tim and nan and marilyn

ps I read the 6 blog responses to Nan this evening and she enjoyed everyone of them, I also printed and let her read Bob and Carrol's description of the choir party last night in Modesto at Clair and Beverly's home, we are sorry that we missed the event and nice to be remembered there by our friends.

Sunday, August 19, 2007

A big break through!

Dear Family and Friends,
This afternoon as Nan got up out of bed planning to come downstairs she found her colostomy bag nearly full. For the first time in nearly a month there was movement in the right direction. We were elated and very thankful. Nan has had a much better day with minimal fever, almost no napping all day, smiles on her face, humor and of course she has begun to tell me what to do, all very good signs. Of course we have no idea of what tomorrow brings but today was good. While Marilyn and Nan watched tv and talked upstairs I cranked out many appraisals. It was my most productive day in a very long time. I am deeply grateful to each of you including Barbara in Houston for your daily prayers and for your genuine concern. Nan has been battered by weeks of nausea, pain and just feeling lousy and we are grateful for a day like today which has worked so much better for her.

Late this afternoon I drove in to Brentwood to Longs to pick up my meds and Sandy happened to be there. She is the most thoughtful and attentive pharmacist we have ever experienced. She has been an incredible help over and over again through these past years. She was glad to hear that Nan was having a better day.

When I talked to Sharon today she sounded so tired. She and Rick have been working like troopers all day taking down some dangerous trees and she sounded like she might fall over any minute, she was really tired but happy that the trees were down. They may get some effects of the coming huricane and they did not want the defective trees blowing down over the house. Wise move on their part.

I also got to talk to Barbara in Houston, a relative who has been so helpful to Nan through this whole ordeal. It was great to put a voice with so many kind comments and time so helping.

Now its time to head to bed. nan is ready for her Adavan and a good night ahead. I sure am too.
I went grocery shopping this evening and I've grown fairly fond of doing that little chore. At least I know where most things are found and can move about quickly. The price comparing stuff I have not tried yet and Dana swears that if I would go to another store I would save money. She is right but the other store in on the other side of Brentwood and that takes planning.

Marilyn is in touch with her family constantly through text messaging and they even send photos. Its quite amazing, here she is talking to her family through texting on the other side of the country and with their plan its free. Helps her stay in touch.

My friends and family members, let us rejoice tonight and just pray that the blockage will stay open and that Nan can be able to eat a bit or two now and enjoy life more again. Perhaps we did not need the doctor to call us back after all yesterday!

Good night to all, thanks for the special messages today, we really treasure them and read them over and over again.


tim and nan and marilyn

Saturday, August 18, 2007

We are still home

Dear Family and Friends,
Nan woke with a 102 temp today and later it was 102.8. We have used small amounts of ibuprofen, 100 mg, normal amount for an infant up to 3 years old and yet it helped bring down the temperature both times. Mid afternoon I called the doctor on duty and we waited, we are still waiting, he never called back so we gave Nan Adavan at 2:30 and she slept until 6:30. Her temp was then 99.3, not sure what it is this minute. Dolly Vogel, our dear friend and appraiser trainer came to visit us this afternoon. She prayed with Nan and talked with her heart to heart. She is so precious and we really appreciate her being willing to drive clear over here to see us. How we love Dolly, she is so good to us.
After Dolly left we moved Nan from the recliner to the hospital bed where she settled in to sleep with two fans blowing on her and no sheet at all. After a couple hours she woke enough to ask for a sheet which we provided. Early evening tonight Pam arrived to share pizza with us and to give Nan a good massage. Pam left later in the evening to drive home to Lodi. Nan woke enough to take her pills and for us to take her temperature. It was an alarming 102.6 so we gave another small dose of ibuprofen and have now taken her up to bed where she is snuggled in under just a sheet for the night.
It was so disappointing that the oncologist never called back this afternoon. Our concerns are that Nan seems to have some congestion in her lungs, that along with the fevers are raising bigger concerns to both Marilyn and myself.
Nan was lifted to day by the visits from Dolly and Pam, thank you for caring. I personally was lifted by their visits too and by calls with Art, traveling in Colorado and Joyce and Glen Conner, long time friends in Lodi who wrote a couple very special emails to me. They have been helpful friends for years, many years and they are looking forward to their first grandchild, we have much in common. Jason called today and Nan could hear Timothy trying to talk in the background. They are doing well and Clayton, Jo's brother comes in this evening. Jason says the number of students who are signed up for school is good and he hopes for even more. God has blessed his work this year and he is very thankful.

We will see what the night brings and then what tomorrow brings. The fevers bring nan's situation to a different level of concern as they can skyrocket so fast and reach a dangerous level in a matter of an hour or two. Something is not right inside and we need antibiotics to manage it.
Funny things just happened. Nan used the phone intercom to call me and ask when i was going to hook up the TPN. Well earlier I had very carefully used an iv push and prepared the PICC line for the hookup but failed to hook it up, it was sitting there beeping and waiting for connection. I had to be reminded, funny.
Now I'm back to finish the blog and turn all the lights off, take Adavan up to Nan and then retire for the first part of the night.
We have all slept a great deal today and asked God to direct over and over again. I enjoyed the church service at Andrews University today thanks to the dish and this afternoon we watched a program with lots of good music.

Please pray for Nan especially now, she needs healing so much in so many ways. How we need God's special blessings.


tim and nan and marilyn

Friday, August 17, 2007

Friday evening - wrapping up a tough week

Dear Friends and Family,

Rough week is right! Nan is trying to go to sleep now with a very painful stomach, nausea and general malaise. She just feels lousy. This morning we noted that she is starting to run a fever again, she had a 100.1 and it was 99.3 last night.
I am praying nearly all the time as I drive, work and sit at my desk that something will give way and that the blockage can pass. We were able to get the pills, AMN, we needed today as we were almost out with no enough to last until monday. So a little trip to Antioch yielded the pills she will need.
We are glad Sabbath is here. It will allow me to be with Nan for the next 24 hours without being forced to be away to work. She is mentally sharp but just does not feel good at all, can't eat anything, hurts to sit up, hurts to lay down, hurts to walk.
The emotional load of seeing nan so ill day after day is heavy, not impossible, just heavy and when you call or email the load is lifted a bit. Dolly has been so helpful this week in so many ways and marilyn is a life saver. She genuinely enjoys helping nan and it shows and helps nan so much.
Tonight we have mighty mite, Keanna here. She is such a grown up girl now, we could not find enough food to keep her full tonight and she is settled in now, so precious. Nan took an early nap so she could be more awake when Keanna arrived. We are glad to have her under our roof tonight.
Please pray your most powerful prayers for Nan. She desperately needs help, healing and soon.

Thank you for your love and prayers, please do not quit or get tired. Nan needs the best we all have to give.


tim and nan and marilyn

Thursday, August 16, 2007

The week winds down, Nan is holding her own

Dear Family and Friends,
First off let me thank you for reading this, for caring enough to remember Nan when you pray, secondly thank you for being our friends and family. We never really feel alone with so many of you just a phone call away. Special thanks to Dolly Vogel who writes me the nicest emails to start my day and thanks for the ramps provided by first Art and then Bob and Carrol. They have made a total difference in the way Nan can move around the house and I can't wait to use the one to the garage and take her out into the fresh air. She felt too rough this evening to even consider it, when she woke at the time I came home she was suffering with back pains especially around her left nephrostomy tube. We pumped her stomach removing about 250 ccs of material and gave her another Zophram dose IV. She has been sleeping since and its now 9 pm. I managed to find a couple books Marilyn has been needing and also some good Taco Bell. She is so easy to entertain, she feeds herself, has no demands whatsoever and helps night and day with nan. What a total blessing she has been to us since Dana had to return home to begin work.
At this point in time Nan really prefers to be asleep since she feels no pain or nausea while she sleeps. I am growing desperate regarding the continued blockage since we are moving into our third week of it, no food, no relief, just suffering. Its hard to see what the Lord has in mind or why He does not intervene yet we trust Him.
We woke at 4 this morning to pump the stomach and do Zophram, then back to sleep and when I left at 9:30 Nan was still asleep. She woke up shortly after that. I met with our Social Security lawyer who was very helpful in preparing me for my visit with the SS office on the 29th of this month. Then on to two appointments in Berkeley, lovely homes, lovely people, then asked the GPS to take me home which it did.
Yet another check came in the mail today, a real blessing as this is the time of the month when the big bills demand payment, thousands each, what a challenge, enough to make one lose sleep!
I have thought this day was Wednesday, I was sure of it and then Nikki corrected me, I had expected to attend Keanna's chapel service on Thursday which I missed due to my unawareness of what day it really was. This 59 years old stuff is tough to adjust to.
We are continuing to enjoy cool nights, down to about 60 so windows can be opened and fresh air enjoyed.
Tomorrow I am going to stay in the office most of the day and finish a number of reports, make a bank deposit and prepare for Keanna to have a sleep over tomorrow night. We look forward to that very much. Jason called this evening to tell us that Timothy had gained weight and was now 9 and 1/2 lbs. That is a real change since he was 8.1 a week ago. Wow, go little guy and Jason and Jo must be doing a great job of feeding him. He is to dedicated on the 8th of September and we plan to try to make the trip if Nan is up to it. She wants to be there very much. So many things would change if the blockage would go away! Do I sound obsessed?

Good night my friends and family,

We love you all and thank you all for keeping us in your prayers and hearts. These are not easy days for any of us especially dear Nan who suffers through it all.


tim and nan and marilyn

Wednesday, August 15, 2007

Visitors make the day

Dear Ones,
Its 9 pm, I'm early and determined to go to bed earlier, no earthly reason to go to bed every night at midnight, just hard to settle down and get there.
Nan has had a day of resting up, she and Marilyn have managed the nausea pretty well with frequent pumping of the stomach. I gave her Zophram this morning at 5:30 and again at 9:30. I got to go to see Keanna and her class lead out in Chapel services today in Brentwood, she saw me at the back door and waved and yelled Hi Pappa, good stuff! She was so happy to see her daddy who collected her from school early and they went to have a picnic somewhere in Brentwood. I drove on to the hospital in Concord to pick up new leg bags from the IR department and copies of the recent scans to send to Boston and UCSF. The scans are pretty sobering and its a good thing we have AMN going now, we sure needed something to slow and cool down the tumors.
Then I grabbed a burger for our faithful Marilyn and came back home to work. Bob called and he and Carrol were willing to come out to visit and to bring some ramp ideas. They had purchased ramps for their powered scooter but no longer use the scooter so have the ramps just sitting in a box, thanks so much Bob and Carrol for sharing. Now we have ramps everywhere we need and can move about smoothly on those days Nan does not feel like walking up and down stairs.
Nan has continued to battle severe pains in her hip, stomach and back. She has increased her oxycontin back to 100 mg again to see if that will help with the pain load. She has taken her pills tonight and is ready to go back up to bed.
We were delighted to have Mary come to visit this afternoon. She sat on the bed with Nan and they just talked and enjoyed each others company just before Bob and Carrol arrived. Nan wishes she could feel better, seems to move from one terrible pain to the next and still the blockage remains.
I got to talk to Art and Connie today as they were driving somewhere in mid america. They had visited the Carlsbad Caverns and were on their way to Santa Fe. They are having a great time so far but had a rather ordinary hotel room last night, old, dirty and sub par. Only one resturant in town and the food was ordinary per Art's description. Soon they will be in Taos to visit as well.
We continue to look for work as the industry has little going on right now. If it were not for the Reverse Mortgages I do for one client I would be very slow.

Thank you for your faithfulness in prayer. Nan needs encouragement, a free flowing colostomy system and less pain.

We have hooked up a new leg bag for the urine, the other one had failed and was leaking. Nan and Marilyn came up with this clever way of putting a glad bag around the bag to catch the leaking and it worked perfectly, I was very impressed but tonight we have new bags, about time since it has been months on the old ones. Let me tell you they are hard to locate. Some medical items seem to be impossible to buy, steal or borrow. Leg bags for nephrostomies are one of those items.

Well its time to head to bed, we want to express our appreciation to Bob and Carrol for their prayer at Nan's chair this evening and a special thanks to Mary who didn't give up when she came yesterday and found our front door locked and we did not hear the bell. Thanks Mary for coming to visit. And Bob thanks for the ramp system.

Please God, hear our prayer for your child Nan, she needs your help, help it seems we cannot find anywhere else, please do for her what you know in your wisdom she needs. Thank you for your blessings in advance.


tim and nan and marilyn

Tuesday, August 14, 2007

More of the same

Dear Friends and Family,
This evening I am writing late because we waited up for our delivery of medical supplies and the guy was a couple hours later. Nan is settling in and Marilyn is helping her with her incision dressing. I just hooked up TPN for another 24 hours and will give her Adavan pretty soon which helps with nausea and sleep.
Today Nan woke at 6:30 and we pumped her stomach, did Zophram and then she went back to sleep again. I left about 1 to see properties in Rohnert Park and Vacaville, then home at 8 pm. I found that Nan had been awake most of the afternoon and had gotten a chance to talk on the phone to Jan and Sharon, Jason and Mary, perhaps others that I do not know about. Mary came to call this morning and even thought we were here somehow we did not hear her at the door and missed her. nan was bummed to miss her, Mary is a very special person in our lives.
It was sure good to hear from so many of you today and I'll read the comments to Nan in the morning, she likes to hear from you all.
We continue to pray and hope for a break in the blockage. It would help so much in how Nan feels to have it open again.
So now its sleep time and we thank you for your involvement in our life.

We send our love,

tim and nan and marilyn

Monday, August 13, 2007

14 months of courage

Dear Family and Friends,
This evening as George, our yellow cat, rubs against my legs and I can hear Nan is watching Saving Grave on her bedroom TV and of course I hear it through the monitor I am finally slowing down. Her TPN is hooked up for another day, her Adavan has been given, her tummy pumped, pills taken and she is finally back in her bed in the cold room. I keep remembering that just over 14 months ago Nan was just out of surgery in Boston and things were very dicey in intensive care with Amy and the other excellent nurses watching over her. I am so thankful for the 14 months in spite of the challenges and suffering. Each reader of this blog has helped us in his or her own way, thoughts, prayers, cards, emails, financial help, phone calls, groceries, ramp, stair chair, ...... what a difference you have made in our lives.
Nan slept until nearly 9:30 this morning, one of the longest nights yet and she slept pretty much without pain or interuption. At 6:30 I got up expecting her to want to be pumped but she never woke. So I hooked up hydration to offset some of the fluid loss she has with the pumping process and managed to get it hooked up without waking her. Then I sat in the recliner by her bed until past 8 when I gave up on her waking and came downstairs to work and prepare for the day. At 9:30 when I was supposed to be leaving she woke and we pumped her tummy, gave her Zophram, Marilyn helped her take her pills and I hit the road. nan remained in bed until about 1 or so when Marilyn helped her come downstairs where she sat in her recliner for a couple hours, then to the hospital bed for more rest. I had prepared an Adavan in advance and Marilyn gave that to her. Terry, nurse came at noon and hooked up little pigtails on the PICC line, makes it easier for novices like me to work with and saves the PICC line from being jerked about. She arranged for me to pick up needed supplies in Hayward.
I saw a ranchette here in Knightsen, then a condo in Walnut Creek. The lady was just home from saying her final goodbyes to her sister who had died after being ill for a long time. We talked at length about her life and her sister. Then to Subway for a quick Gardenburger sub, then to Oakland to a home where no woman has been for years, two brothers, oh wow what a mess, great little guys but sure needs a woman's touch, then on to Hayward and the Critical Care facility, then home through very slow traffic for a 8 pm arrival. Long day, glad to have the work and very glad to be able to touch Nan's hand again and talk to her.
Nan continues to be weak and to suffer with back pain, background nausea, blockage is the big enemy again.
Now its bedtime. We received a cute card from Barb and Gerry today and Nan enjoyed reading it. I continue to enjoy my birthday and encouragement cards and need to get my new shirt out of the drawer where Keanna stowed it and try it on, thanks to Nikki.
And so it goes, Nan is not feeling well, Marilyn is here and reading a big book but helps Nan with everything she needs during the day. I am trying to catch up work wise and get more organized. I keep trying to stretch the money to pay a little to different medical bills. None are huge bills, the largest being about $2,100 and the smallest about $75 so I pay a little here and there trying to keep them sort of happy.
Thank you for your prayers for Nan. Oh that God would see fit to open the blockage and Nan could enjoy eating a bit from time to time and not feel so lousy.

Thank you


tim and nan and marilyn

Sunday, August 12, 2007

Hanging in

Dear Family and Friends,
This Sunday evening Marilyn is back, the motorhome is put away, cat food has been purchased, bank deposit made, Nan is resting quietly in her hospital bed. She has had a pretty decent day but is fighting constant pain and depression over it. She continues to have a normal temperature but needs to have her stomach pumped about every two hours around the clock or she becomes ill. I could not tempt her with juice, ice tea, any food, only ice water with the special ice kept in the garage freezer.
She came down about noon and sat up in her recliner for awhile but experienced significant back pain and some pain in her left nephrostomy. She then moved to the hospital bed where she can find a comfortable position. After a bit of Adavan she was able to sleep for several hours. Marilyn came home this evening and had a great time with her friend in Sacramento. She enjoyed the break and we are delighted she is back with us again here.
I am going to see 4 properties tomorrow, my busiest day in a long time. The nurse will come tomorrow afternoon to draw blood and to check Nan's vitals.
Both Nan and I are growing pretty tense over this bowel blockage. It has lasted over two weeks now and is limiting Nan's ability to enjoy anything as the resulting nausea is almost constant. We did find a small amount in the colostomy today which is a hopeful sign. We feel like no one in the medical community even cares about the blockage, sort of alone with this one.
Nan did appreciate getting to talk on the phone this evening. Someone to talk to really helps.
So we head to bed hoping for a good night, thankful for normal temperatures, thankful for good blood numbers but oh so hopeful for the blockage to cease.
Please pray for Nan. I just long for her to be able to enjoy life again even in a limited manner.

We look forward to a good week, we seek God's special blessings.

Love to all of you and many thanks for your help in so many ways. Your involvement in our lives keeps us moving forward, keeps us from being lonely, from giving up.


tim and nan and marilyn

Saturday, August 11, 2007

Sabbath evening, this has been a real rest day

Dear Friends and Family,
Its midnight and I just got Nan settled in bed. Marilyn is away tonight visiting her friend in Sacramento so its just Nan and I. Nan slept from 2 to 9 this afternoon after a little adavan and a lot of need for rest. She woke, walked over to her chair, took her meds, ate a part of a peach and then suffered for the next hour until we could use the pump to clear her stomach.
We woke several times last night an used the pump to clear her system. By doing that she had better rest the other hours. Nikki called this morning to say Sabbath School for Keanna was on so I met her in Tracy and we enjoyed Sabbath School, then lunch at Olive Garden. That was fun as Keanna is now at an age that she can be a part of the conversation. She is a delight. Nikki and Keanna hung around in Tracy but I drove home to be with Mom and allow Marilyn to leave for Sacramento.
It is hard to describe how helpful it is to have an extra person in the house. We have enjoyed having Dana for a couple months, others for a shorter time like Jan from Denver and Barb and Gerry from Lincoln and the nice ladies of the Tracy Church as well. We loved having the brothers here even if it was so short of visit if you blinked you missed them. Nan was so happy to have all 4 together again.
Marilyn is going to be with us for another month and we are delighted and gratified for her willingness to be so helpful.
Now its bedtime and looking back this has been an ok day. Sabbath School was a nice experience, lunch was enjoyable and filling, the afternoon of rest here in the family room with mom sleeping quietly in her hospital bed was good also. In spite of everything we do have lots to be thankful for. For one thing we are very thankful to not be having fevers right now. Now if we could get rid of the blockage perhaps Nan could have a few days of joyi again.

Sending our love,

tim and nan

Friday, August 10, 2007

Interesting birthday

Dear Friends and Family,
Its 9:30 now and Nan is in bed, Marilyn is beside her in the bedroom recliner and Nan is trying to get her pills down. This day has provided revelations, cards, phone calls and a visit to the doctor for Nan.
Perhaps the most interesting thing today was, last nights CT scan shows relative stability, tumors are not larger. When we had a discussion to see if Nan could go up to the 800 mg level that patients on compassionate AMN at Dana Farber receive. Dr. Melnynk considered for a minute and then left the room to research the study data and came back to inform us that Nan should have been taking 800 mg per day for the past two weeks, that is double the amount of AMN that she is now taking. So tomorrow she will start 800 mg and we will see how that helps her with the tumors. She has had a very rough day with nausea, lots of vomiting, back pain. She was go glad to get back from the doctors office and to bed.
During the day I heard from my brother and sister, ARt, Pam and of course clients as well. Art and Connie continue to enjoy caring for the grandchildren and are really looking forward to Sarah coming home on Sunday evening to resume caring for the children. Its a great thing they are doing for the kids and they are doing a great job.
I have had a good birthday in spite of being very busy with work, caring for precious Nan and this evening Nikki and Keanna came to bring presents and to cook a wonderful dinner. Cottage cheese special K loaf, wonderful mashed potatoes, gravy, fresh corn, WOW! Now they have gone home and the place seems quiet in their absence. Nikki got some really thoughtful cards which touched my soul. My day started with Loree, book keeper, receptionist, data entry, house sitter and a bunch of other jobs, well she came in with a great card, balloon, wonderful candy and a hug. Nice way to start the day.
Mid day I drove over to Richmond to see a place that turned out to be turn key perfect, cute, well cared for and nicest on the street. Its a pleasure to see such a well maintained home. Then back to meet up with the ladies at the doctors office, then home to help Nan into the house and upstairs, then to the office to put in orders.
So in summary Nan's tumors are being helped by the AMN and when we get the right dosage perhaps she will get even more help with the tumors. We are still fighting the blockage and in spite of the wonderful white peach she ate this morning there is still no activity in her colostomy bag.
In the morning I will have the honor of taking little miss to Sabbath School and having lunch with Nikki and Keanna at the Olive Garden, that is unless Nan needs me at home. In the afternoon Marilyn is going to Sac to visit a friend and Nan and I will hang out together, napping, enjoying christian programing and just being together.

A point of correction, I turned 59 today, NOT 60 as was commented on in the blog, lets not rush it OK.
Thanks all for your nice emails, cards, calls for my birthday, Fern you were the only one who sang to me and thanks for that. Jason called and said Timothy is now 8 lb 1 oz and is doing well. The three of them had just come back from a walk through the neighborhood on a very pleasant evening.
So love to each of you and thanks for your continued prayers...........

tim and nan and marilyn

Thursday, August 09, 2007

Nan has a big and very long day!

Dear Ones,
You won't believe all the things Nan got done today. Last night Terry came and drew blood for the type and cross, then I drove it to Concord. I went to bed this morning at 1:38. Then up for a call to the doctor office this morning early. Thelma was great and said she would arrange the transfusion for today if possible. I decided to go for broke and ask if she could also arrange to have the picc line replaced internally and do a CT scan. She was not so sure that all could be arranged but we got the confirming call about 10:25 for Nan to come to the hospital. So we loaded her and Marilyn drove her to Concord. First they worked on her picc line and ended up replacing it and after an xray and a second adjustment it was completed. then the first unit of blood started about 3 pm, the second unit ended about 9:45 this evening and then she had a CT scan, waited a bit more in her hospital bed and then they drove home. Considering what she has been through she looks great this evening. Marilyn and I have just tucked her in, helped her take her meds, got TPN going again after it was off all day today, started some extra hydration, gave her Adavan and she is settled in for a long summer sleep. Amazingly this morning her temp was normal and all day at the hospital it was normal as well, after so many weeks of fever, normal, praise God!!
Marilyn is worth her weight in gold. We are deeply grateful to her family for sharing her with us.
I meanwhile drove to Valley Springs to see a little house, then using the GPS found and photographed all the comps and then headed for Turlock, about an hour plus away. That place was a mess, owner is 84 and plans to get it cleaned up and live in it again but it has had no one for several years and it shows and it smells. Great people. They are descendants of Alexander Hamilton. Then the GPS did its magic and located 5 properties over a 10 mile spread. At about 8 pm I started home which was 59 miles away.
When I got home I prepared her TPN, changed the sheets, enjoyed some folk music on PBS and had a good peanut butter and tomato sandwich with a glass of cold milk. Gourmet food! The tomatoes I picked from the back deck so they were less than 1 minute from the vine to the mouth, yummy!
I think the general consensus is that the AMN might be working as the tumor does not seem to be larger and the new one she located seems to be harder to find now. Hence the CT scan, another tool to see if any measurement of tumor size can be made.
Tomorrow Nan has a doctor appointment and I think Marilyn will take her since I have a noon appointment in Richmond. I'll try to meet them at the doctors if I can get back in time. Tomorrow I grow older and my only birthday wish is for Nan to feel better, to get better.
I had a chance to talk to Art today, he and Connie are baby sitting for his daughter Sarah in Texas while she is away and they are actually enjoying the process, a 16 month and a two year old. By Sunday night they will probably be very happy to welcome Sarah back home to resume her motherly chores. I also had a chance to talk to jason, nikki, my brother jerrry and of course work related people as well.
Thank you for your prayers and ongoing concern for Nan. She is a very determined person and that solid backbone is serving her very well right now in this tough time. If you were here with her you would be so proud, she is amazing and growing stronger every day.
My prayers are re: blockage, tumor vs AMN and increased strength.

love to each and every one of you precious friends and family,

tim and nan and marilyn

Wednesday, August 08, 2007

Home safely, Nan resting, Transfusion on the horizon

Dear Friends and Family,
After a very cold night, brrrr, we woke to a foggy morning and then it burned off and the day was spendid. Nan woke, needed Zophram, stomach pumping and then Timothy came to visit. Jason and Jo brought little guy out for a visit with grammy. I took the dogs and we went for a short walk. Grammy held him on her chest for awhile and after he got a bit heavy Jason moved him to a pillow right beside her and she got to play with him as he proceeded to kick his beautiful blanket off and wave his arms and do Super man arm waves above his head. His big eyes take things in and he jumps when any loud noise startles him. He is content if the big three are taken care of, clean diaper, yummy milk and someone to hold him. Last night he managed a couple 4 hour sleeps and he is now eating more and demanding even more after the bottle is gone. He is gaining rapidly and is about as cute and beautiful as a little boy could be. Last evening we went into the house and nan walked from the back door to the chair, several steps. She got to hold him and feed him and enjoy him again. We had food from a place we like in town, China Garden or something like that, Jo was kind enough to run to town for it. Unfortunately Nan could not eat. It has been over two weeks since she has had a bite of food, the blockage prevents any idea of food and we longing ask the Master healer for blockage relief. Both Marilyn and I do not find the visible tumor larger than it was, it might be wishful thinking on our part but it seems the same. If Nan could break the blockage she would be feeling pretty well right now. She woke this morning with a temperature of just 98.9, lowest in awhile but of course when you are sleeping in an ice box that helps. She spent most of the night under just a sheet and finally asked for a blanket, so I gave her mine and went to find another, well poor planning on my part. I was sleeping on a air bed and the bed was filled with what, cold air of course and all I had between me and mattress was a sheet, well I was cold all night, I mean really teeth chattering cold.
Mid morning I took the dogs for a long hike down to waters edge and we contemplated the pacific ocean, searching for answers, solutions, acceptance, absolution.... then back to reality and the process of preparing the motorhome for the road, turn front seats around, tie back privacy drapes, bring in the side slide, store everything safely somewhere, surround Nan with pillows, put away hoses, electrical cord, cable TV cable, back out without knocking down the power line. Oh yes it was worth it. Nan got to enjoy something more precious than gold, a little man who she had a part in bringing to this world. To see them look at each other, worth every mile indeed.
This time I got to hold him too, to feed him, to give him his binkie, pacifier. It is a nice feeling to hold this precious little person who has everything ahead, who has loving caring parents who hover over him to protect him, feed him, love him, console him. I am so proud of both of them, they are doing a great job and Jason is so much more involved in care than I was, it shames me.
Soon the nurse will arrive for blood draw and then I'll drive to Concord and then I'll drive back and then I'll go to bed, hard to think of all that yet tonight since its 8:45 now. Oh well in life we do what needs to be done, not what we feel, not what might be fun, we do the loving thing and really it is an honor and great privilege to help out.
So friends enjoy the photo galary, Nikki said to take lots so I tried to. I think there are couple that are really precious. I included one of Nan and Keanna when she was little, that was a very happy time too.

Please pray............


PS Yes I realize that I did not get one photo with Jo this time, yes she was there and very busy doing all the right mother things for Timothy, photos of Jo next time, sorry!

tim and nan and marilyn

Tuesday, August 07, 2007

Timothy is growing fast, we are at MBA tonight

Dear Friends and Family,
Thats right, we are in Jason and Jo's side yard in the motorhome watching House. Marilyn is reading by poor light but she swears she can see fine. Nan is resting with pillows and Starr nearby. We have had a pretty big day.
We heard from our oncology group today and Nan's blood is to a point where she needs a transfusion. We negotiated a Thursday transfusion and Terry will come tomorrow evening and take blood for the cross and type, then I will drive it to the hospital and blood bank group.
We loaded up this morning so Nan could see Timothy again. The last trip found Nan suffering from a very bumpy road surface so we tried a new route. We drove down I5 to 152 to Gilroy, down Highway 101 to 129 and then to MBA. Yes it was a few miles longer but we did not have the same rough surface and a much more pleasant trip. We arrived middle afternoon to find delightful weather, clear skies, perfect ocean views. We were able to go in and enjoy little Timothy. Mom got to hold and feed baby Timothy for hours. Then when she started to not feel so well we brought her back to the motorhome to rest for awhile. I also got my chances to hold the little guy, feed him, watch him turn his eyes to me wondering who I was and of course I explained that I was his Grampy.
Now we are settling in for the night happy that we have got to see our precious children and Timothy. Tomorrow morning we will spend more time with him and Jo and then head back home. Nan has been doing pretty well but has some very severe pain at times. We have just taken on some Adavan so she should sleep for awhile and hopefully will have a good night.
We are thankful for a safe trip today and it is so good to be here tonight in this cool place, so quiet and secure. Loree is being kind enough to care for the kitties and fish, the puppies are with us on this trip.
This afternoon we took a spin in Nan's wheel chair. Barbie, she got to enjoy the breezes, sunshine and beautiful scenery and was out for about 30 minutes or so. It was great.
Nan is settling in for the night. She treasured her time with Timothy today, it is more precious to her than just about anything and the two of them together is a beautiful sight.
Please continue to pray for the blockage, for the tumors and for Nan's health in general.
love from our little house on wheels to each of you

tim and nan and marilyn and timothy and jason and jo
Isn't it magic to see Nan and Timothy look into each others eyes.!!

Monday, August 06, 2007

Pain, blockage, sleep

Dear Family and Friends,
As I write Nan is sleeping in her hospital bed on the other side of the office wall. Today when she has been awake the pain in her lower back has been unbearable and after a while she asks for Adavan and goes to sleep. She had a good night only waking once. Her temperature was only slightly above normal this morning and last night she slept with a blanket and open doors and windows, it was 58 outside. She has learned to start off with a huge leg pillow which elevates her legs well above the rest of her body and then during the night she kicks it out and uses a more conventional pillow as a trade. Starr, her wonder dog, slept right beside her all night and made no move when I got up around 7. At 8:30 Nan woke up, we pumped her stomach, gave her Zophram and shortly thereafter she came downstairs to her chair. It was cold enough that she got to use the nice electric cover that Nikki gave her. After a few hours she was suffering too much from lower back pain and moved to the bed where she has been the rest of the day. We changed her fistula dressing as that is once again draining heavily. The tumor beside the fistula is huge and looks like it might pop. We have to do the dressing differently now due to the tumor size. We have pumped her stomach several times today to remove backed up juices.
I wrote an email to Boston this morning with questions regarding meds we might use for fever control if we had a need. Travis said Advil was OK to use. He also said that all the AMN compassionate users they are in contact with take 400 mg of AMN each morning and evening. Nan is taking just 200 mg each morning and evening. So leave it to the bull dog, I called our oncologist and asked if he would make an attempt to get Novartis to consider allowing Nan 400 instead of the present 200. He is concerned about limited kidney function as AMN can be hard on kidneys and Nan's operate at a level of about 15 or 16% with higher than normal creatins as a result. He agreed to take a new look at the results from todays blood work and if the creatin level is reasonable then he might talk to Novartis. I appreciated being able to talk with him as he is a very busy guy.
If Nan feels up to it in the morning we plan to take the motorhome to MBA and visit with Jason, Jo and Timothy again. We will probably just stay overnight and then come back the next afternoon. Nan would really like to see him again and of course so would I. We may try a different route this time as the one we normally use seems to be nothing but huge bumps. We think we will consider going down Freeway 5 to 152 and go across to 101 and then across 129. It is worth a try and perhaps the road will be much smoother than the other way. Do you have any thoughts on the different route?
I lost some hair today finally submitting to a hair cut and also went grocery shopping. Dana has covered all the shopping for the past 2 months which was a real blessing but now I'm back to it and thats OK. Got everything I could think of that Nan might like to eat just in case she feels up to it.
Marilyn has been very attentive to Nan's needs today, met Terry this afternoon and is content to read her book. When nan is awake they talk and watch judge TV shows or CSI shows.
I've been doing lots of research for a client who may have many orders to place soon. I have 5 orders right now to schedule and I can't get a one of them to call me back with a time. It goes like that sometimes, other times the whole day lines up instantly.
I've had a battle keeping focused on work today as I know Nan is very discouraged and down with fears and concerns about the tumors. It is very hard to think of anything else. We are doing what we can to survive but there is little joy in our lives right now. Not complaining, just saying it like it is. Nan had tried to reduce her oxycontin level to 80 mg morning and 80 mg evening but I think her back pain is much worse on the lower dose. That decision is up to her to make. She does not like to take so much pain med yet can't live with the terrible pain without the meds.
I want to thank you for your gifts which have arrived in various methods, handshakes, cards, letters and in all amounts. Over the past 14 months I've had lunch money given me, spending money given me, large amounts for the recovery fund and a couple bucks sometimes just to have something in the pocket. We appreciate it all. You have made the difference in us keeping our home, buying groceries, being able to watch Christian TV on the dish, buying meds, hotel bills, airline tickets. I was adding up the different amounts we spent in 2005 and just the trips to City of Hope in Burbank ended up being thousands of dollars, flight for 2 there, rental car and fuel, one night stay or more in hotel, various expenses to the hospital itself, meds, meals. Somehow God has stretched the resources and we have been able to do whatever we needed to do for Nan's care. Looking back over the past 11 years its been an amazing journey with dangerous surgeries, trials, new meds, old meds, always trying to makes things better and to fight off the GIST tumors which come back faster each time. Nan has been an amazing person through all of this, seldom breaks down, seldom complains, just faces each new disaster with grace and determination. I know of no other woman who could have faced all of this in the same manner as Nan has, just makes my love and admiration for her stronger every day. There have been so many milestones, seeing Nikki and Steve married, seeing Keanna born, seeing Jason and Jo married, now experiencing Timothy as a newborn.
So it goes, we intend to continue to do everything we can to support Nan's life and the results are in God's hands. We have learned to fight, to seek, to question, to promote, to push, to accept nothing less than the best available.
I was glad to see Nan on her phone today, not sure who she was talking to but I know its good therapy for her to talk and share and receive encouragement. Please call and if you don't get her call again later. When you do so you are an active member of her treatment team and are doing something proactive to help her get through the day. Don't wring your hands with worry, ring the phone instead!
Please keep Nan in your prayers, blockage, tumor control, pain!

love from our quiet place to yours,

tim and nan and marilyn

Sunday, August 05, 2007

Nan gets some much needed rest today

Dear Family and Friends,
Nan slept until 8:30 this morning almost without waking at all during the night. Once again she went to bed with a 101 temp and woke with a 99.5 and last night she used a blanket, just can not stand to be so cold for hour after hour.
We think her blockage continues since there is very little out the colostomy and we have to pump fairly frequently, Marilyn got 700 ccs out at one point today and I also got some this morning a couple of times. When I thought over how much fluid is coming out of her body I did a hydration this afternoon putting some much needed fluids back into her body. It has now been a week since Nan took a bite of anything and she battles the edges of Nausea all the time. We use zophram often which helps.
This has been a tough day emotionally for Nan. She misses Dana's cheery presence and when changing her colostomy today she discovered what seems to be another tumor just under the surface near her stoma. That was really hard to take as it seems like a setback instead of a step forward against the tumors. Physically Nan remains about the same, able to walk slowly but pretty steady, able to find a comfortable sleeping position usually with the use of pillows, able to take her meds by mouth and very alert when she is awake, no mental lapses.
We are hoping to see little Timothy again soon and nan is looking forward to seeing him up close and personal.
I worked on taxes for the year 2005 today and made significant progress, just need to find the month of December and input it and then can hand it over to the tax man who happens to live next door. Then on to 2006 since we are filing late. I am looking forward to Loree, our bookkeeper, house sitter, pet sitter, fish trainer, bank rep and good friend, looking forward to her working part of her days here in the office come tomorrow. Orders do not come in like they used to but we do see some from time to time. In spite of losing Dana to her own home where she is surrounded by grandchildren we have had a pretty decent weekend. Marilyn is a real dear and is good for Nan. When Nan is sleeping Marilyn reads her book or naps and when nan is awake they talk over movies, our history together, what is happening at her house, her kids text message and keep her up to date on events.
Tomorrow morning Terry, our nurse, comes to take blood and vitals. She was here on Sabbath afternoon to fix the picc line but this is an official visit for which she will be paid.
As I look at Nan's situation and medical condition my prayer concerns are: tumor stability or reduction vitally needed, blockage breaking lose so Nan can eat a bite here and there again, courage for the ongoing fight in spite of stiff odds, continual resistance to infection.

Please pray that the AMN will work and that the bowel obstruction will open again. Pray for Nan to have her quiet courage and faith that God is in control.

Please oh please do not forget to call from time to time. Although nan might sound sleepy it is still very good for her to get beyond these 4 walls and exchange words and ideas with others.
So tonight and tomorrow please remember dear sweet Nan in your quiet times with your God.

love from our house to yours and from our family to yours as well,

tim and nan and marilyn

Saturday, August 04, 2007

Sabbath evening, its been a good one

Dear Friends, Family, Gisters and casual onlookers,

Nan had a pretty good day with lots of rest and frequent calls from Dana as she flew home. We drove to the airport leaving Discovery Bay at 5:30 this morning, we made the trip in 1 hour 20 minutes and she and John, her son, took their luggage and headed to the terminal. It was very hard to see them go, what a special magic time they have created for us, thank you Dana for everything you have done.
I drove home and slept in the recliner not wanting to wake Nan. I was not sure if I was going to take Keanna to SS or not today but Nikki got a change to sleep in and took it. Her hours are so long during the week that I'm glad she got to sleep. I turned on the christian dish and enjoyed the general conference president as he fielded questions from young people about the church and growing as christians. Nan woke up mid morning and decided to come downstairs. We managed that fine and she settled into her bed for a gentle morning. She and Marilyn exchanged storiesa and got her meds down for the morning. We pumped her stomach several times as she appears to have bowel blockage again and things back up causing stomach pain. She has not had a bit to eat in days. Last night when we took her up one of her picc lines came undone so she called Terry, our beloved nurse, to come repair it. Terry had a day of driving all over the bay, Vallejo, Mountain View and came this evening. She was able to repair it but thinks we need a new one to be inserted when Nan has her blood transfusion.
I walked out to the car and she said Nan was doing well and was very relaxed and calm. She was quite impressed.
Nan had her normal fever of 99.3 this morning and 101.1 this evening when she went to bed. As long as her white count holds normal we are doing pretty well. She wants to reduce the level of her oxycotin to 80 mg from 100 mg to see if she can tolerate that level. She walked well each time she moved about today. Around noon I noticed Steve with Melaboo in the back yard enjoying the lake. He left Melaboo with us and joined Nikki and Keanna at the park for a huge birthday party of a 1 year old. They had a blast in spite of the heat. Then Nikki and Keanna came back to spend the afternoon. Pam arrived with gifts of Marie Calendar pies, yummma and her precious little puppy, fencing, potty box and toys. nan enjoyed meeting the new puppy and our dogs were very curious and somewhat hostile. At one point this afternoon I woke to find Marilyn, Pam, Nan and myself were all asleep, a very relaxed time indeed. Keanna played very nicely with the little puppy, was gentle and seemed to really enjoy having someone little to play with. Finally it was time for Nikki and Keanna to head home and Pam left as well, tired but happy for her visit with Nan. After she left Marilyn and I felt compelled to enjoy another piece of pie, so good.
From time to time Dana would give us progress reports. Her trip home did not go as planned. When they got to Phoenix there was only one seat on the flight they had intended to take to Houston so she sent John home to meet his father at the airport and she then started searching for another way, well she made it but her took her nearly 12 hours to get home. The last time she called we could tell she was very tired but glad to be back with her family.
Our days are on a fairly even kneel right now, low grade fevers, stomach discomfort / pumping, some pain but nan uses pillows very well to offset it, limited energy but total mental clarity, general tiredness, perhaps tumor stability, other than nausea no other side effects of the AMN are apparent yet, a couple hours of being awake and then several hours of rest, calm most of the time, very engaged in doing adavan or Zophram, helps with IV pushes etc. Kidneys working well with good output.
So we enjoy this time of being home, not in a hospital and enjoy the calls, email cards, mailed cards and visits.

So this evening I bid you a quiet good night as we jointly seek God's hand and will.

tim and nan and marilyn

ps. photos include two of Nan with Terry our precious nurse. check out Nan's smile! Nice huh!