No nausea, lots of pain in its place

Dear Family and Friends,
First off a huge thank you to Sylvia for coming early and staying late, for her many successful attempts to encourage Nan to try frozen gatoraide, for being so faithful in her care of Nan and for taking on the corner lazy Susan in the kitchen. No one has ever dared go there before and its looks great tonight and now offers useful space. Wow! Thank you Sylvia for sharing your day with Nan.

Nan is having to cope with some pretty severe pains from the surgery, the tube passes through her skin, her muscle layer and then through the wall of the stomach itself. And all those layers have to heal and begin to feel better. Nan has had a pretty good day overall with some naps, some awake times, munched on a whole ice tray of frozen gator aide (what a good idea), munched on gummy worms to get the taste out and of course had ice chips.

The wound care nurse came to call and the delivery from Critical Care was made also. Plus the new modem for our switch from cable internet to dsl if we decide to go through with it. Our Comcast has become so unreliable, it takes little breaks in service all day long which play havoc with our attempts to connect and stay connected.

Because Sylvia came so early this morning I was able to be in Oakland by shortly after 10 am, did a duplex then another duplex, then drove to Richmond to do a review and then just 4 blocks away did a full appraisal. It was 4:30 when I finished and it was with pleasure I took a call from Nan to check up on my arrive home time. I dealt with traffic, took back roads and got home as quickly as I could. During the day I talked to Marilyn who is our Rhode Island friend and we confirmed her coming in on Sunday evening at around 8 pm to Sacramento. We are so much looking forward to her being with us and to catching up on what her kids are doing and how her life is going. Marilyn is a dear from from early ministry days in Sacramento Central and came to visit Nan every week while we were recovering in Boston. She treated us so well and helped out so much during our stay there.

We got word today that one of our main clients had their office closed today by the home office. Everyone is fired and of course no more orders will be coming our way. Our hearts go out to the people who work in the office. We are sure that God will send us the orders we need but we will miss their faithful checks every few days.

Nan slept all night last night and I did not come down until about 6:30. She asked when I was going to use the suction pump. It had arrived too late last night and I did not want to wake her. We figured out how to make it work and turned it on, at first nothing and then suddenly the tubes became alive with fluids and in seconds the canister was totally full. Nan warned me it was full. So I emptied it and came back and we got another 1/2 canister out. Syliva has faithfully used it every hour or two during the day and Nan has felt NO nausea at all. Pray the loving Lord for that.

As I drove today (in Nan's nice van) I kept thinking over our options. Somehow we need to find the source of the blockage and get it fixed, we need to find a way to deal with the tumors, need to access the new drug AMN107 and I'm no closer than I was to submitting all the paper work and CDs etc. Frankly I'm not sure how to collect all the stuff they need on the list and I'm not sure who to turn to for assistance.

I did take the 40 minutes on the cell while I was driving today to talk to the IRS and things worked out better than expected, still I need to finish up my prep work for the 2005 year redo and soon. Just one more thing for the agenda.

Today 6 of you took time to respond to the blog. In a minute I am going to print the messages out and read them to Nan. She is too ill to operate the computer and has not checked her email messages in many many days. So when I can I print things out and read them to her and she smiles or nods her head in response. She is touched by the many many kindnesses and expressions of love and support.

I am facing another minor storm over finances, seems there are more bills to cover than income to offset, yet we are thankful for having this kind of job where I can be with Nan for days at a time and give her the help she needs. Tonight I am just tired, worn out and working to maintain a smile for Nan, she needs to see that. I just pray for relief in the blockage, for tumor control and for recovery.... broken record I know but its our reality. I met such nice people today at the properties I appraised, they are all praying for Nan and one nice guy sent home a bottle of water from a faith healer, Leroy Jenkins. I got to see him preach and heal once in Ohio with my sister Sibyl and this gentleman sent the bottle of water home saying it has God's anointing on it. What a sweet thought.

Sending our love to each of you,

tim and nan

Success in the OR, Nan is home and resting well

Dear Friends and Family,
Today went pretty well as medical days go, Dr. Gollapudi called about 9:30 from the OR to let us know to be there on site at 11. We registered and went up to OR where they took vitals including a heart rate of 110 and normal blood pressure and there was no fever. The nurses were very kind and supportive, Nan is sort of a celebrity since most nurses have never seen anyone with all the medical history Nan has. The doctor came and spoke with us briefly and then in a few minutes I once again stood there waving my hand forlornly as they rolled Nan away. I think I've done that about 50 times now for all the surgeries and procedures over the past 10 years. Never feels good. So after a few tears at Nan's instructions I found the cafe and ate. I was only back a few minutes when they said she was coming back. The doctor said they had pumped 800 ccs of fluid out of her stomach which should not have been there at all, during the endoscopy he found ulcers in her esophagus which he says will heal with the Aciphex she takes. The tube insertion went well and now she has a little coil of clear tubing under a bandage on her chest, sort of looks like the air line to add air to your tires. He told us to work with the tube, empty when she needed and as the colostomy starts putting out more then she can drink and eat more, all of this is hoping that the assumed blockage will unkink itself and material can flow through. After about an hour they woke Nan, dressed her and she got into her wheel chair. We drove home and got ice chips at In and Out Burger, I was forced to purchase a milk shake, don't want to look cheap and just get free ice. We drove home and Nan went right to bed and has been asleep since except for a very welcome phone call from David her brother.
The doctor was supposed to fax a prescription for a vacuum suction device from Apria. Well he forgot even though I had the fax number ready for him. So we just called again and now they are seeing if they have it in stock! Yikes, nothing like having a tube ready and no way to suction it out. Errrrr, don't like this much.
Nan handled it all with her normal resignation and calm. She always asks the name of her nurse, a gentle gesture which tends to make things more civilized, in spite of her current condition I heard her ask the nurses name. What a gal.

We felt very good about the doctor, several people in OR mentioned that he had worked on members of their own families and they genuinely like him. I can see why, soft spoken, very clear on what he was doing and why, seemed to have great respect for Nan and for her medical journey.

Amazingly it all started at the Antioch hospital 10 years ago when the first surgery took place and no one had any idea of what the tumor even was they took out. GIST as a name had not yet been born back then.

While Nan rests I'm taking care of some business, arranged for my bug to get its AC revived in Brentwood Thursday afternoon and Friday, plan to rotate the tires this evening on the van, need to make appointments for tomorrow to maximize my time while Sylvia is here with Nan.

We've talked to both Jason and Nikki today to keep them up to date on the progress, also Art, Sharon, Barbara Lammerding and Gerry, tried to reach Mary but she was away, talked to Dana and Dave called Nan directly. People help and the messages to the blog from you are very much appreciated today. Thanks so much.

Well now back to business. Thanks for your prayers and expressions of love. I am praying for AMN107, for tumor reduction, for removal of the blockage and for recovery!

love from

tim and nan

Nan resting, procedure now scheduled for tomorrow

Dear Family and Friends,

Its 8:50, nan has been sleeping since we got home at 6:30. The day did not go as we thought it would. First we called the doctor as instructed at 7:30 but he was on the road, please call back at 8:15, did and he said he had not been able to reach Dr. Gollupdi who would be the one to do the procedure. He said their office would call back with an appointment at 10:30. 10:50 no call back. I called and found they planned to see her on Thursday, I told the office lady we could not wait like that so they added her to the schedule and we went in for a 5:15 appointment. Nice doctor, asked the right questions and ended up saying he would call us from the hospital in the morning, Wednesday and tell us when to come in for the procedure. Expects to be done by noon or before. Will be outpatient so afterwards we will be coming home.



What they propose to do sounds helpful, they will insert a small tube into her stomach and when nan begins to feel nausea or bloating she turns on the vacuum pump and pumps the contents out, then turns the pump off until the next time. They believe it will stop the nausea and vomiting completely and immediately. We certainly hope so. nan is so worn out from the dozens of vomiting episodes, perhaps a hundred or more by now that she can hardly think straight. This afternoon we dressed her at 4, she walked to the car, rode up front in the seat, got out to the wheel chair at the Dr. office, sat in the chair for 1/2 hour, then back to the car, got ice on the way home and she walked back into the house and headed to bed. She soon was asleep but I gave her Adavan anyway to facilitate her deep sleep. I think she will sleep until at least 10 pm.



On the good news front, some checks in the mail, immediate response from City of Hope. Dr. Chow sent the dates Nan was in Sutent trial and will send CD of the CT scans that show her progress there and ultimate failing of the Sutent drug. We need this as we apply to get AMN107 from Novartis. We have heard nothing from Boston yet, I'm thinking Dr. Morgan may be on vacation as he always responds instantly.



I moved appointments from Tuesday to Wednesday and now to Thursday so I can be with nan. Kind people from Tracy were willing to be here today and tomorrow plus Thursday but we had to let them know things had changed and I was here with her.



Thank you to the 6 families who took time to write encouraging messages today, thank you very much, this morning was pretty bleak as I kept on getting the run around from the medical people. Now its time to call the IRS, got to face that one, never fun.



Do you wonder sometimes at God's leading? His timing? What His thinking is about Nan or about your life as well. How does prayer work exactly? How can he hear my thoughts as I agonize with fear, hope, disappointment, time management, financial stresses? How does it all work?



So the day ebbs away, the sun has set over our little island with its palm trees, the cool evening breezes have arrived and the day winds down to a crawl. It has been a good day I guess, got some work out, some work reviewed, some appointments made, some money to put in the bank but Nan continues to be in limbo, Adavan induced limbo for her own good. Perhaps after tomorrow we can forgo the Adavan and help her back into recovery. My prayer is for God to heal the blockage, break it loose so things can work properly again, that God will control the tumor growth, that Nan can get back on her feet and feel better.



Dana dropped a bit of a bomb shell on us this afternoon. We knew her schedule was somewhat fluid but Nan had been looking forward so much to seeing she and Marilyn next week. Well Dana has some medical stuff to attend to so won't be there until the following week. I could tell Nan was hit hard by the news but we understand Dana has some health issues she must deal with and we wish her well as she does. We just can't wait to see Marilyn and in just a few days now. Someone for Nan to talk to, to do things with, to watch movies together.



Must say good night now, I'm fading fast and I still have some things to do for Nan, clothes to fold from the dryer, TPN to prepare and tonight I will go to bed before midnight as I get up several times during the night to check on nan and I'm falling behind in my sleep.

So good night good friends and family,

We send our love to all,

tim and nan

4:30 monday afternoon report

Dear Loved Ones,
Today has been interesting! Terry came at 9 as expected and did her normal blood draw, changed the IV dressing, assessed Nan and had me call the doctor. Nan was quite ill while she was here so she got the full brunt of the vomiting. A plan emerged slowly as we talked to Dr. Patel. He wanted nan to go to an emergency room and get an NG tube down her nose to drain the stomach of the fluids backing up. Nan flatly refused saying to me she would rather die than have a NG tube. Unknow to others is a night in an ER somewhere and a Swedish nurse who decided she would put a NG tube into Nan. She crammed again and again and it kept coming out Nan's mouth until a doctor nearby told her to stop it, so she left in a huff muttering how she never failed... So Nan remembers that terrible experience and shudders at the thought of it being done. So I had her talk directly to Dr. Patel and a different plan was arrived at. I am to call him tomorrow morning at 7 or so through the office, he is setting up an appointment with a gastrol internalist (spelling and names are probably wrong) and a small tube will be inserted directly into Nan's stomach. It will extend ourside her body and can be capped off. This tube will drain any fluids backing up which are presently causing the throwing up. He feels strongly that a bowel or intestine is kinked and causing blockage. This procedure will allow the body to relax and perhaps unkink itself in a few days but in the immediate it will relieve the throwing up completely. It will be done using a microscope and could be an outpatient procedure, at the most they might keep Nan one night. We are rather excited about this step forward. He explained that none of the nausea meds will deal with a backed up GI tract since the fluids have to go somewhere. He was very kind and gentle with nan and with me explaining what his thinking was and why we needed to do this. He was willing for her to be hospitalized but does not see the need at this point. This means Nan can feel better almost immediatelly and we are very excited about that. Of course we do have some really good stuff here to sell now!!

Another point of interest, Terry bathed Nan and changed the gown and urged her to get on the scales. Two weeks ago it was 149 and today it is 135, much much closer to her normal weight of about 130. That was very good new and it means that when we want to we can use the extra hydration without fear of hurting her.

So tomorrow is now the day to watch and pray about. It seems God has been planning this all along, go to the shower and enjoy family, then get this procedure to help relieve the fluids buildup. Now to get the material together to present to Novartis to get the AMN107 on compassionate basis. One more task for busy timmy.

Terry also handled the fact that we were out of the only drug which helps her sleep now, Adavan and arranged a shipment to our front door at 12:30 with a new supply of what we needed. By 1 pm Nan was asleep and has been asleep every since, its now 4:45. You see they doubled her dosage from .25 to .5 every 3 to 4 hours and sleep has come easily to her.

I am working in our little office which is a wall away from where Nan is sleeping so I can hear her every move and whimper. ARt has been keeping me company and Nikki checked in too. Its sort of hard to plan future events or appointments when things keep changing but I am so thankful that I have this job and not a 8 to 5 job. This way I can be with Nan much more and be a help to her.

Please pray that God will guide tomorrow, I always get a little nervous when Dr. says it is a simple procedure, even a cave man could do it, so we need God's blessing and guidance.

Sending love and I loved every word people wrote in today on the blog. When I read those messages I immediatelly think of the people writing and put myself there with them as they write. Thank you friends, I have checked for messages a dozen times today and every time there was a new one, very precious indeed.

Love

tim and nan

Photo just in

Here is a photo taken at the shower.

Home again after a meaningful trip

Dear Family and Friends,
Family has never meant more to us than this weekend. Nan enjoyed seeing Jason and Jo as they visited the motor home often and in spite of being pretty much in her bed she still had many happy moments. Keanna was so cute, she decided to place kisses on Nan's foot and then rub them in to help the pain, seems to work as the pain in the foot, leg and thigh was less last night and today.
We finally got up about 9 this morning after being up a couple times during the night, not bad though. Jason came to the door of the motor home and I went out to talk to him and ended up eating a nice breakfast with them. Nan managed an entire bottle of water during the night but probably lost that much this morning. She has been taking tums that Jason and Jo had and that seems to calm the burning in her stomach. She loves to have ice water nearby to sip and we used pillow to prop her up higher in the bed. We used up nearly all of our medical supplies, each IV infusion of Adavan uses as least three saline pushes, the Adavan itself comes in tiny vials which at the most have 4 doses when drawn out using a small needle and we are down to the last little vial with 3 doses to go.
Late this morning we unhooked from Jason's power, water and cable and under his watchful eye backed out onto the road missing a power line guy wire I have hit before. Reluctantly we drove away from MBA and headed home. I had given Nan a dose of Zophram and Adavan just before leaving so she slept most of the way home and was fairly comfortable. I drove slower than normal so things would not be so bumpy. We drove directly to Brentwood which turned out to be a problem, seems hundreds of people wanting to buy produce, cherries, apricots etc were jamming the roads. We finally made our way through to Longs where we picked up Marinol, an anti nausea medicine with strange origins, pot! Nan took a dose and then we drove home. At home I helped her down the steps, actually lifted her part of the way and when she got to the ground she was ready to walk and did so quite well into the house and to her bed where she settled in for a long afternoon nap. I unloaded the motor home which ended up taking more than an hour. Fixed a cupboard door that keeps coming open above my head when we are driving, stripped the sheets, emptied the frig and freezer and started a load of wash. with Nan all settled and sleeping I drove the motor home back to Safeway for fuel, 10 cents off due to a recent food stop, parked it in storage, drove the Fiero home. Then I started the whole process of meds over again, got the TPN ready to go and decided to add hydration tonight since Nan has lost so much fluids through vomiting. One unwelcome touch today was tinges of blood in the stuff coming out.
Terry our visiting nurse is coming in the morning at 9. When she talked to Nan this evening she asked her why she was not in the hospital and Nan said, we are waiting on you to tell us so that could happen tomorrow. We are in our third week of the vomiting when ever Nan is awake and alert. Something has to be done in my opinion. We are now using 6 different nausea solutions and only one really works and that is Adavan which makes her sleep and its primary function is not to solve nausea.
What a temperature difference between MBA and the ocean and our home here in Discovery Bay. Seems like about a 40 degree difference. It was so pleasant to actually need a coat at Jason and Jo's house. As we began to drive home today it remained cool in Watsonville, even in Gilroy and we did not start the AC in the motor home until we were out of San Jose at the Sunol Grade. I was concerned that Nan might be getting to warm so I switched from vent to AC and gradually it pulled out the heat and replaced it with cooler air. On this trip the motor home worked perfectly. Due to its low profile and streamlined design the winds that hit us below Gilroy hardly effected us and the same coming home over Vasco Road where the winds were high. Only once did I really hear Nan cry out, that was due to a stop I had to make which was quicker than expected and she started to slide forward.
When we finally checked the mail the Sabbath checks had come again. Enough to pay the most pressing of the bills and to cover payroll for last Friday, praise the Lord. I already made the deposit which is good since we were slightly in the red in the business account. While I traveled home today I enjoyed talking to Art for many miles and then to Sharon in Texas. Helps keep the spirits up where they belong to communicate with friends and family.
We are thankful that we made the trip and as I came into the house on one of the many trips to bring things in I heard Nan on the phone explaining what happened at the shower and I was gratified that she got to attend. What a gutsy thing to do, she felt terrible but she went and enjoyed it so much. This morning she felt the baby kicking up his little storm and I know she liked that too. It has been a magic weekend in spite of the health issues, a weekend to reflect on blessings and relationships, to be thankful for what we have in each other.
Well my friends it is getting late and in spite of my best intentions to go to bed earlier, seems it does not happen. I honestly could use more time right now, time to complete important things that are begging for attention. Some are done, some remain but a lot depends on how Nan's health is judged by Terry in the morning.

So my family and friends, please PRAY, asking God to once again intervene and stop the vomiting. And of course may His divine will be done.

love
tim and nan

A rough day at the beach

Dear Family and Friends,
At this moment Nan is being sick. This has been a day of many, many times of being sick with naps of a few hours inbetween. But there have also been moments with Nikki, Keanna, Jason and Jo which are precious ones indeed. After Nan had a decent night with only a few interuptions she woke early to nausea. We have used Adavan many times today along with Reglan and zophram, ice water and more ice water. Nan is exhausted from this constant throwing up.
Since I started writing Jason and Jo came home from a school musical program and came to visit us in the motorhome. I had just given mom another dose of Adavan IV to see if we can calm the storm inside. We also used a bunch of pillows to help her sit up straight for awhile and she has been sipping ice water to deal with the burning in her stomach.
We enjoyed watching a DVD of a program that Keanna was in at her school and at the end she and her friends fall off the bench they have been standing on, they just disappear, very cute and since no one got hurt had a good outcome. It was fun to see the kids frolic, sing and wave their arms to the music. What a good place for Keanna to be!
Jo and Jason had such a nice shower with many many items of clothes, equipment, baby supplies, car seat, high chair etc. Nan really enjoyed getting to attend the shower and be a part of family history, what a special event for her in spite of how she is feeling right now.
I am totally in love with my family, of course I know you think you have the greatest family but excuse me but I think I do. They have made Nan and me proud over and over again and getting to spend this time with Nikki, Keanna, Jason and Jo is very special to both of us.
In the morning Jason and I will attack weeds or anything else Jason wants to work on and then mid day we will head home, back to the heat which we have escaped down here. In fact the furnace has been on the whole time since we arrived.
This afternoon yielded yet another pleasant moment, after a very good potluck hosted by Jo and Jason, Nikki, Keanna and I went to the beach. Keanna had her heart set on playing in the sand and Nikki had brought all her beach toys along. Although the weather was very cold and overcast Keanna did not seen to notice. She and Nikki dug deep holes in the sand, made castles and in general enjoyed an hour and 1/2 at the beach. Then back so Keanna could take a bath and then they headed home. Jason and Jo caught a nap and so did I in the motorhome captain chair. This evening we have watched some TV and tried to deal with the occasional bouts of nausea. Now its bedtime and I hope, I pray that we will be able to sleep most of the night. At this point I don't see how we can possibly avoid Nan going to the hospital as this nausea only gets worse. Tomorrow we will purchase and start the Marinol hoping to get Nan a high instead of the many lows she has recently been forced to experience. She is looking forward to the med in hopes that it will be the help she needs.
While I am writing House in on TV. Nan and I both often comment we need a House Character to solve Nan's current problems. Of course that is TV and we live in a very real world, a not very fun world lately for Nan as she battles with a very tiring condition.
Please pray that Nan can beat the nausea. God knows what is wrong and we so need Him to share it with a doctor, or anyone who can help Nan.
Thank you for your concern, your prayers and your ongoing love for Nan.

from our hearts to your hearts,

love

tim and nan

Nan goes to the doctor but not the hospital

Dear Family and Friends,
After having a fairly decent night we woke early, got Nan dressed, inserted Adavan, took Oxycontin and walked painfully to the van. When we got to the doctor's office Nan could hardly stand to step into the wheelchair but she did it in spite of the leg pain. After just a few minutes we were put into a room and they drew blood for a CBC. Then the doctor was there, we expected to be told to head to the hospital but the word hospital never came up. He examined Nan's foot and leg and decided to increase the lovenox from 60 to 100 mg for a while in case there might be a blood clot lurking in the left leg. Then he decided that due to the increased pain oxycontin should be increased to 40 mg morning and night instead of the present 30. We then talked about the nausea and he prescribed Marinol (Nan can now get high legally) and Reglan to try to find something which works for the nausea. WE already had some 100 mg lovenox shots at home and will order the rest next week. Longs did not have the Marinol today. I found out that of the 5 meds we now have available for nausea 4 can be used at the same time as each hits the problem from a different angle. Only Zophram and Kitril cannot be used at the same time. So we can use Adavan, Marinol, Zophram or Kitril and Reglan in an attempt to put a stop to the nausea and vomiting. I am about to give Nan her last antibiotic in the series. Lets hope, pray that with the antibiotic out of her system and good meds like REglan in her system her GI will begin to work properly again.
When we found out we were not going to have to go to hospital we decided to take a chance at something we thought was impossible before, we went home, I gave Nan Adavan and she slept while I loaded the motorhome with medical supplies, clothes, equipment. Then I loaded Nan in, the steps up are terrible, and we left for our trip, first stop to make a deposit at the bank, next stop to give Nan more adavan and go grocery shopping since I left a full box of food sitting in the kitchen and Loree had to come put it back into the frig. Next stop Jason and Jo's house. Yes on a whim and grabbing the chance we came down to see Jason and Jo for the weekend and to enjoy the shower for baby Timothy who is two months from arrival. Nan tolerated the trip reasonably well and is now sleeping soundly. Soon I will administer the antibiotic, the adavan, the TPN and then head to bed. We have a super soft mattress topper which allows Nan a very comfortable place to ride and rest. We have everything on board we need (I hope).
While with the doctor we also laid out a plan to work together to gather all the material we need to as for AMN107. As I suspected the doctor does not begin to have enough time to collect all the CDs and reports from the various places Nan has been treated, yet they are all needed if Nan is to receive the drug on a compassionate basis. So we work together collecting evidence and he will compile it and write the cover letter which may open the doors we need opened.
The doctor was very pleased with the lab reports and X ray taken on Wednesday, totally normal, no blockages, all levels in pretty good shape including Potassium, hemoglobin, white count, creatins. So while Nan feels lousy her numbers are pretty good overall. Makes no sense.
We had a call today from Travel Guard, they have denied our request that they pay the $730 we had to pay to get our luggage home, makes no sense at all and I argued and lost. But out of the conversation I found out they intend to reimburse us for the lost days at sea, we will be paid for 7 days of the 12 day cruise, that was wonderful news indeed. It will be more than the $730 we lost on the luggage shipping.
What a nice change in temperature when we passed Gilroy. We went from central AC in the motorhome to vent only and finally the heater on. We have a pleasant place to park next to their home with full hookups and we are cozy with our furnace going now.
I enjoyed talking to Art who is in Indio, he had the enjoyable task of removing Pidgeon droppings by the garbage can full off the roof of there home there, several hours on the roof with the pidgeons, sure sounds full.
Nikki and Keanna are here tonight as well, they love to play on the beach which is about 1/4 mile away, when you step out of the motorhome you can hear the surf, nice!
Well now its time to start my medical stuff and then sleep. Please pray for a breakthrough for Nan and the nausea, the pain in her thigh and leg and for her to begin to enjoy life again. Art is right, God sees things from a different place than we do.

Thank you to each of you for your help and support this week.

love

tim and nan

Thursday evening, a very challenging day for Nan

Dear Friends and Family,

Today has been a continuation of the nightmare that grips us. Yet there have been bright spots midst the gloom. Joyce Western, a long time friend from the Tracy SDA Church and a neighbor for years when we lived in Tracy, came to be with nan today. She arrived at 10:30 and gave Nan someone to talk to for awhile, someone to be here just in case nausea hit or bags needed to be emptied. Joyce brought her mail to sort since she has been away for a bit. nan and I thank you Joyce for coming and helping today. When Joyce had to leave Loree was the cover person, dropped by, called to make sure things were good and then around 4 I got home from working. nan had a terrible episode of vomiting this morning, high volume and violent, then it did not strike again until late this evening. When I got home she was ready for the remaining Adavan the little vial held. Then the delivery from home health arrived with TPN for tonight, more Adavan, needles, batteries, etc. So later in the evening I gave her a full dose of Adavan and she fell asleep. When I first arrived home her leg and thigh hurt so much she could hardly stand it so I rubbed it for awhile. Afraid I'm not as good as Jan or Pam or Sylvia at rubbing but she fell asleep for awhile afterwards.

As I drove out this morning at 10 I was upset that the doctor's office never called yesterday afternoon to tell us the results of the X-ray. When I called the office this morning the doctor that ordered it was not there and they could not find results in the office. Later they called back to tell me that the doctor that was on duty today wanted Nan to sip small amounts of water today and at the appointment in the morning with Dr. Melynk at 8:30 we would be told whether nan should go to the hospital or not. So that cryptic message is all we got. So we really don't know where we stand. Facts are: Nan has intense pain in her left leg, thigh and even foot at times, nan continues to have nausea most of the time when awake, Adavan helps her sleep and as she sleeps she has no nausea. She continues to run a low grade fever continuously. Nan feels lousy but can walk when she needs to, can talk intelligently, just would rather not since it takes so much effort not to throw up when she does anything at all.

I drove to Fairfield to see a house with rather poor housekeeping but good design and nice neighborhood, then on to review an other's appraisal of a house in Vallejo built up on a hill in a private gated community, little lots, lots of living area, high values of about a million. Hard to see how how it is worth it but there is that security gate out front of course.

Then onto Martinez to see a home where the owners have been moved by AT&T to the Midwest and are willing to purchase the home if it does not sell on its own. It is priced reasonably and is perfect property on a quiet court BUT nothing is selling, no matter what the price. I am required to find a list price that will make the house sell in 120 days. That is a relocation appraisal, pays $500 but is worth every penny of it by the time you are through.

Because Joyce was kind enough to come help today I was able to keep up with needed appointments. I was going to take nan's odyssey but I have a hard time driving her car, somehow it does not seem right, so I took mine hoping for cool weather, wrong. My little exterior device said between 95 and 100 all day, so I lived like most people in the world, that is without a/c. Windows open, can't hear the radio or the phone, shirt was wet a lot and I stopped and purchased water and drinks a couple times. Day was tight on time because I had to get there, get the jobs done and back home so Nan would not be alone very long. It all worked out. I've spent the evening with Nan while she was awake, made myself a Bagel and then Nikki asked if I wanted pasta from a new place she has located. It was great, she and Keanna came to call about 7:30 and mom got her Keanna medicine. She also got her special umbrella Pam had brought her from Yosemite Park, she played with that and discovered that she is now strong enough to open and close it by herself, thanks Pam for making her day. Nan and Nikki got there heads together over things and then they had to go home so Keanna can get her rest, Nikki too actually. We fired up the central AC to cool the room where Nan's bed is since it was up to 83, too much to be comfortable in a hospital bed with a jell mattress.

Now its time to go to sleep since we have to get up early tomorrow morning and get to the doctor on time. Need to leave house at 7:30 to there on time.

I have enjoyed talking to Art several times today as he and Connie traveled to their home in Indio. He is such a good sounding board and loves Nan so much. I also got to talk to my brother who is 10 years older than I am. He is still working as an engineer for Union Pacific. He has had to run a train the last two nights, all night, don't know how it does it. Many of his wife's grown children have migrated home for a bit so he says they have a full house right now. I think they are enjoying having family around.

I've talked to Pam several times, if the public only knew how many hours these public school teachers and administrators actually worked perhaps we would appreciate them more. She left here last night after 11 and was back at meetings this morning in Stockton at 8 am. How we appreciate and love her.

So tomorrow morning is important in that Dr. may have a better idea of what we are facing, what could be causing the constant nausea. I am in hopes that he has already started the process of trying for AMN107, I want him to know I'll do all the legwork I can to assist with getting the drug on compassionate use. We need something to help the tumors and we need it soon, that is just my opinion based on 10 years of observing Nan and tumors. How many times we have sat in Dr. offices and been told about new tumor growth, every time shocking, every time terrifying and every time so far something has been able to be done to deal with them. Over 10 years we have fought. God willing we will keep fighting for quality of life and recovery.

So please pray that God will lead, heal, comfort, instruct, open doors. I think it is highly likely that nan will be admitted to the hospital sometime tomorrow and of course I will blog and let you know what is happening. We so appreciate you keeping Nan in your prayers. She is a precious, brave, delicate, stubborn, lovely lady, worth our prayers and our love.

with love

tim and nan

X-rays and more nausea,

Dear Family and Friends,
This has been a very long day for Nan. It started this morning around 5 when we did some Adavan, Zophram and then went back to sleep until about 8. I slipped out but Nan was able to sleep until about11 when she came downstairs. I had called to speak to one of the oncologists regarding nan's continued battle with nausea. Dr. Ganey called back when he was free of patients and after listening to my concerns, some fevers, constant nausea and my desire to get started in applying for compassionate use of AMN107. He suggested that at this point instead of her coming into the hospital we have a set of X-rays done at the John Muir medical center in Brentwood which is nearby. We knew the bed was to arrive between 2 and 6 so we hurried to the medical place and after a few minutes were ushered in for the x-rays. Then Nan felt up to a coke icee at Burger King and then home to wait for the bed to arrive. We beat the bed guy by hours and Nan was able to rest in her chair until the bed came at about 4:15. Nan climbed in after I found sheets and comforter and says it is pretty comfortable with its jel pad. Mary was kind enough to come by so while she was here with Nan I headed for Steve and Nikki's, got to see precious Keanna for a few and enjoyed a few minutes with them on their front lawn. Then to the grocery store for a few things and back home. nan slept most of the time that Mary was here because I had given her more adavan at her request. Then Mary had to go and Pam arrived a bit later. We found ourselves totally out of IV saline pushes this afternoon but Terry the nurse had some in her garage once again saving the day. So now Pam has left for home in Lodi and I have the TPN running, Adavan in, Zophram in and the antibiotic in as well. Nan feels absolutely lousy when she is awake so prefers to stay sleepy with the drug.
It was my prayer this morning that God would guide us to a solution of the vomiting and so far this evening that has not happened. The x-rays will let the doctors know if there is any obvious cause of the nausea. We heard that the x-ray report was to be given stat to the doctors so we waited all evening to hear anything but only silence on the medical front.
Tomorrow our friend Joyce is coming from Tracy to sit with nan from 10:30 until about 2:30. I plan to leave about 9:30 and be home about 3:30 from my work in the field. In the morning when I rise I will need to get some work that is over due out, seems today had so much stuff to do that I was not able to get much work out. I fitted in an inspection at noon of a lovely new home which is selling for over a million and a half. It is nice but the monthly payment is amazing for a home like that. Even the taxes are higher than our mortgage payment total. Loree did good work today helping with things and even helped me move the couch out of the family room to make way for the bed. Now it is bed time. Our hearts are heavy with discouragement and the unknown. What is driving the nausea? What can be done for it? How soon?
Tonight I beg of you to seek God's will for Nan. She has suffered so much over the last 2 weeks. We need some help from somewhere for sure.
Please Heavenly Father, share some healing love with Nan, guide the medical team to be motivated to solve this present problem in a timely manner. Thank you for hearing our prayer.

So we say good night and we love you, we need you and we appreciate all you do to help with the load. Especially thanks to Art for his many conversations today, all helpful. Thanks again to John and Karen who tonight are home in Denver and thanks to Pam and Mary for coming to visit Nan even though she sleeps a lot. She knows and cares.

Love from our family to yours.

Tim and Nan

ps great news today for Bob and Carrol, no chemo in the forseeable future, good numbers. Thank you Lord for your healing!

Sylvia, John, Karen make Nan's day

Dear Friends and Family,
How can we ever thank Sylvia for her dedicated help today? She arrived promptly and was a great help all day to Nan, got her on a regular Zophram schedule, gave her Adavan to help her rest, got her to sip some ice water, rubbed her back and helped Nan pass the long day. Sylvia being here also helped in that I was able to drive to Richmond, Oakland and then back to Byron to see properties and keep the cash flowing going. Thank you Sylvia. Sylvia also discovered that Nan is running a fever and we just checked when I put her to bed and the fever was 99.8. This is alarming since it is the first temperature above normal since she left the hospital 10 days ago. So we will keep a close eye on the temperature.
John and Karen Cress came to visit this evening. They are dear friends from the years when they pastored the Tracy SDA church and ever since. They are both extremely involved in active pastoring and building people in the Lord. They had been in the bay area for professional meetings and found time to visit Nan. Unfortunately while they were here Nan was hit with a very hard bout of nausea and lost a lot of fluids. She was totally wiped out and after I gave a bit of Adavan she fell asleep. John and Karen have been prayer warriors many many times for Nan's special needs over the years. They have visited us every time they can when they can get away from their heavy responsibilities in Denver. We love to see them and I am lifted by their genuine love for Nan and concern over her present condition. Karen prayed for Nan before they left. It was hard and a bit tearful to see them leave as they are such good friends and its hard to let them go.
So once again today friends we have made over the years once again offer comfort, encouragement, memories and prayers. Our lives are very rich in quality friends. Personally I am so glad that Art is back from his trip to Greece. He and Connie had a very good time and saw lots of beautiful places and things. Yet in this day and age it is always good to have them back safely.
Today my little bug officially lost its AC cooling. Since the car is black that makes for a specially warm ride. Our local attorney referred me to a specialist in Social Security cases so I drove to Concord to meet with him and to turn over our file. He took the case and after reviewing things a decent settlement for back months and a helpful amount is likely to come each month once we can get it started. He works for a part of the settlement so no money had to be paid today, a really good thing! Since I was across the street from the VW dealer I asked at the service window what a new compressor would cost for the car, total comes to about $1,100. Wow, here we go again. I'll check other places to see if I can find someone who can do it for less. The little car has been so faithful and now has 142,000 miles on it so its easy to understand how the AC could need work. The fix engine light has been on for months and that probably needs attention too.
Today I was able to pay my E&O insurance, pay the back due on AMEX, pay the honda payment, promise a payment to CitiCard, now I watch the mailbox to see if money continues to come in, nothing today! Yikes. One thing about getting Nan unto disability is that medicare can also kick in and start helping cover some medical expenses I hope. I feel sorry for the Blue Cross system with the high costs Nan's care has racked up. Well not too sorry really, that is why we pay $1,100 a month in premiums for their care.
I had another round with the travel insurance company. They are demanding credit card proof for how we paid for the cruise. Well it was paid for a very long time ago and I have not been able to locate the old statements. CitiCard is shipping me old statements but it could take another 10 days. I tried to reason with the lady at Travel Guard. I said, you know we paid for the cruise because we are on the cruise ship and the trip was interrupted, she said I know but it is our policy that this proof must be in the file, I said but logic says we did pay or they would not have let us on the ship and we are not getting any of the money we paid for the cruise back. She could not budge and her supervisor didn't either so the whole $12,000 plus is stuck in limbo until I can prove that we paid for the cruise. I was nice but I did not feel nice right then. Perhaps God can help with this little matter, I have not asked for His help yet.
Our current dilemma is the same as yesterday, at what point do we take nan to the hospital? Terry, nurse, thinks we are doing everything for her here that they can do there and she is right but in the hospital Nan would have daily blood work and specialists mulling over her nausea and at least trying things to solve it plus if we are really back into fevers then she will have to be there in the hospital since we are poorly equipped to solve them here at home.
The hospital bed is coming tomorrow. Our part for the month was a reasonable $41.00, a bill I could handle for a change. They will deliver and tomorrow I am staying in to work except for a quick inspection up the street here in Discovery Bay. New place for $1,600,000. Should be nice I suppose.
Tonight I am grateful for a safe day personally, for the loving care of Sylvia and the good judgement calls she made in Nan's care. We appreciated John and Karen's visit very much and pray that they will have a safe flight back home. I was touched by getting to talk to my brother and then Art several times today. I am thankful that Nan slept from 9:30 last night until 7:30 this morning without waking. When Nan sleeps she is not throwing up.
Please join me in praying for a solution to nan's nausea. If we could see that solved then nan would be doing pretty well, oh and yes include the fever issues as well.
Thank you for your concern, your love and a special thank you to Jan for her wonderful care of Nan while she was here.

love

tim and nan

Monday evening - facing hard decisions

Dear ones,

This evening we are just not sure what to do next. Nan has continued to vomit all day and this time it is large amounts. She sips ice water and trys her hardest to keep things down. We have used Kitril, Zofram, Adavan and still she vomits. She appears to be doing pretty well on other fronts, heart rate is normal, blood pressure is normal, temp is normal but she feels terrible with the ongoing nausea. She is afraid to go into the hospital, not knowing how long she will have to stay, yet we are afraid not to do anything. It has been over a week of constant vomiting day and night, when I say constant I mean every couple hours and if she is lucky she can sleep all night before it hits again. The leg pain is much better and even the back pain has been less intense today, just the nausea.

We said good bye to Jan this morning. Nan got up and came down to her recliner before we left for the airport at 6 am, she slept there until Terry came to care for her at 8 am. Terry was still here when I got back from Oakland and Terry said that in general she is looking good but Terry is concerned about the vomiting and suggested Adavan IV. Now we wonder if the new antibiotic which we have three more days of is causing the nausea. It did not the last time we used it.

Nan has spent time up and down today and seems to be more comfortable in the recliner than in bed all day. Her hospital bed is supposedly on its way but no call to confirm that yet.

We are pretty low this evening. We just don't know what we should be doing to help her. We are not even sure that the Dr. will allow her back into the hospital with her general balanced vitals and such. Blood was drawn today so the reports may indicate something wrong, those results will be available tomorrow.

Jan called this evening to tell us that after being in a hold pattern for nearly an hour she landed in Denver. She was heading home, soaking in a tub and then sleeping. There are no words to express our gratitude for the time she spent with us. She was such a lift to Nan's spirits and helped her in so many different ways. She rubbed sore places for hours, played with Keanna over and over again, fed me, got movies, groceries and didn't get very lost this time. Jan brought us up to date on her world and her pleasure with Kara getting ready to graduate this week. Our lives were touched by her compassion and her love.

This is one of those evening when you just wish you could call someone with answers and get a good start on improving things, there is no one to call with the answers other than our Father in Heaven. Nan is very discouraged and badly needs lifting. Perhaps Syliva who is coming tomorrow can be of assistance. We sure look forward to her being here to help and I plan to get out and use the time to see some properties too which she is here. She has to go at 4 but I'll try to be back by then.

This evening Starr has a hard time settling down with Nan in the chair, she has been so good lately giving needed warmth to Nan's hip at night, sleeping with her quietly for hours during the day but tonight Starr is having a hard time settling down. She looks at you with her big brown eyes and you wonder how much of our unease she senses.

You may remember that recently I shared my anxiety over needing to renew my license but needing to take 28 hours of classes before I could apply. Well it turns out that all I have to have for this renewal is a 7 hour class called USPAP. I took it this afternoon online and passed so now its just find the hundreds of dollars to renew and ship out the forms. One item out of the way, IRS wants $4,400 by the 26th so that is another challenge. Sutter Delta called today seeking $15,000 for a hospital stay. I told the nice lady to double check, that our insurance and the hospital had an agreement to accept the insurance payment as payment in full and so she started to check and found that there are negoiations being conduced between Blue Cross and the hospital. I think that bill will go away soon.

Jan compiled all the medical bills we have onto a word document so I can see what I am facing at a quick glance, wow!

Nan and I really need your prayers of encouragement, healing and guidance. We just don't know what to do next to solve these issues of nausea.

Thank you loyal friends and family for your continued care and prayers.

We are looking forward to see Marilyn Titherington on June 3 and Dana and family arrives about June 5. Nan can hardly wait. Barbara and Gerry have let us know they can come down thursday evening and stay through sunday if Nan is feeling better and is not in the hospital. What would we ever do without friends and family, you all make life liveable for us.

For your love and pray support we thank you,

tim and nan

ps thank you Jan for everything!!!!!

Sunday and we bid Jan goodbye.

Dear Family and Friends,
Its 9:25 and I hear Jan and Nan talking and I know Jan is rubbing Nan's leg, knee or foot as they talk. Jan is just back from having dinner with Mary at the local steakhouse. Mary insisted on taking Jan out to eat, she had only had a yogurt all day and needed some food. Mary came this afternoon and they talked while Nan slept for several hours. I was out doing three appraisals taking advantage of fact that Jan was here with her.
Nan has had much less nausea today but still has some intense pains in her limbs. She is walking much better and stronger now but still feels lousy. Nikki did some shopping for Nan today and they got to debrief over that this evening. Nikki and Keanna arrived just as Jan and Mary went around the corner to go eat. keanna helped me do some moving stuff around in the garage and then we fed the ducks and geese. Nikki has some wonderful new photos of Keanna from this afternoon, so cute and yet I am totally partial, she is my precious little girl.
Jan flys out of Oakland at 9:30 in the morning so it will be an early start from here since we have traffic, monday security line at the airport and mobs of people in general. We will try to leave the house between 5:30 and 6 am, an early call indeed.
We are so thankful to Jan for her visit. She has been wonderful in her care for Nan, spending hours rubbing painful places, just sitting with her, talking small talk, watching movies and old TV shows. She is amazing with nan and Nan has responded well to her kindness.

We found out today that our dear friend Marilyn Titherington is coming to visit on June 2. She was so good to us while we were in Boston and came every week to visit Nan from Rhode Island. We will enjoy seeing her again, can't wait. There is no one like Marilyn and we have memories of when we were first in ministry in Sacramento and Walt and Marilyn worked with the church where we were assigned. We grew to be close friends and have kept in touch over the years.

Sylvia called today to let me know that some people can help this week in keeping Nan company. Such help really helps a lot and we thank all those who help out.

Well its time to prepare the TPN and head to bed, early call tomorrow morning. Terry, the nurse comes at 8 in the morning and I should be back around that time too from the airport. Our wonderful neighbor LeAnn has agreed to be by her phone in case Nan needs help from the time we leave until I get back. Friends everywhere doing what they can. We are so very blessed with friends and family.

So for this evening my request is that God will continue to help with the nausea, with the pain and with finding and obtaining a new med to control tumors. Lets keep praying.

love
tim and nan and jan

Saturday night in Discovery Bay

Dear Family and Friends,

This has been a day with some ups, some downs but still a decent day. As you know Keanna had a sleep over last night. I managed to get her room clean enough that she could reach her bed and have some comfort there. Jan helped her take a bath and got her ready for bed after feeding her dinner. Nan enjoyed pop in visits from Keanna to check on her Grammy. Finally it grew quiet as Keanna settled down for the night. Nan had one of the roughest nights she has ever had in her life. Pain controlled her left leg, knee foot and thigh. No amount of rubbing could take away the pain for long. She was awake at 4 when 12 hours had passed and she could have the second infusion of the antibiotic which will help her leg pain. She was ready and did not want to miss it or delay it. So at 4 this morning we infused the medicine and then tried to go back to sleep. Poor Nan was awake more than asleep with pain and vomiting. Finally this morning early on she began to sleep. We had belgium waffles for breakfast and shortly after breakfast we were startled to hear the sounds of the stair chair. Nan had got herself up, had the TPN bag in hand was coming down the stair chair. She stayed downstairs in her recliner all day and actually slept very little but hourly bouts of nausea ruined the joy of the day for her. Keanna fed geese, ducks and a big carp or bass with crackers, she and Jan played games, watched videos and both Jan and I took turns taking her to the park to play. Mid afternoon Nikki came to pick her up in her new Pilot, what a nice ride that is and I'm so happy for she and Steve, nice choice.

Late afternoon Nan decided to head up to take a big rest and did so. We heard nothing from her for a couple hours. Then Jan got pizza and a movie for the evening and now we are all either sleeping or getting close to it. It is almost impossible to believe that Jan's visit is almost over already. She has been such an inspiration and help for Nan, rubbing her leg and foot by the hour, getting her crushed ice, helping her with her pillows, Jan has been a wonderful help to Nan and I've eaten better too, real meals!

I'm not yet sure how I will cover Nan on monday morning. I will have to leave by 5:30 or 6 to get Jan to the airport in time to go through nasty monday security and to her plane on time and yet have Nan covered with help. Terry the visiting nurse will arrive around 8 to 8:30 to take vitals, blood work and that will help care for Nan until I get back.

I am going to Fairfield and Richmond tomorrow to do appraisal work while Jan is here to be with Nan to help her if she needs anything.

This evening we think we see an improvement in the pain in the leg, knee and foot but the nausea is no better, perhaps worse. We do the meds which are supposed to be wonderful at helping and yet she is hit with waves of nausea over and over. It just breaks my heart to see her so miserable and ill.

We are very grateful today to our Heavenly Father for another reason. Enough money came in the mail from clients today to cover all the payroll. What a special blessing that is and what a relief. Its never enough but it sure beats an empty mailbox. Thank you Lord.

I just want to say a special thanks to people who have visited recently, first our wonderful kids, Sylvia, Yvonne, Barbara, Jan, Mary and Jan. Your investment in Nan is wonderful and appreciated deeply.

Please ask God to provide a way out of the wilderness of nausea for Nan so she can eat and feel better. We are growing more desperate every day not knowing what to do next for it.

Praying for a real turnaround tomorrow!

love from tim and nan and jan

ps Jan tried a Sharon proven remedy, wrap the limb in plastic, what ever, her leg is better tonight!

Friday evening - wrapping up a tough week

Dear Family and Friends,
Jan is so tired tonight, she has been invaluable all day helping Nan in so many ways.
We left the house this morning at 8 am and drove to the oncologists office in Antioch. The visit was very helpful, Dr. Melynk is an incredibly kind person and listed to our woes, examined Nan's foot and leg, saw the swelling, felt the heat and saw the redness. He prescribed the same thing we had about 3 or 4 weeks ago when Nan's foot hurt so badly and it was delivered to our home this afternoon at 2:30. By 2:35 the medicine was flowing into Nan's blood stream. He also agreed to order a hospital bed for Nan with jellpad, filled out a form for our travel insurance, started the process of getting AMN107, at least he has the papers that Jerry Call emailed me. Any help from anyone getting the AMN from Novartis would be appreciated. After we drove home Nan walked into the house, up to her stair chair, from the stair chair to her bed and crashed. Before too long she call out asking to come down to her chair. So we helped her come down and she and Jan watched movies for hours. Nan was in intense pain for most of the afternoon and Jan sat in a little Keanna chair and rubbed her foot, her leg, her thigh and it helped a bit. Jan helped her so much during that time. Finally about 5:30 she went back up to bed and tried to sleep but of course the dogs kept opening the door, so I switched door hardware from another door and now her door closes and stays closed. She managed to sleep some but mostly was in pain to strong to let her sleep. Jan rubbed her leg some more. Finally Nan took an Adavan which often will help her sleep. Keanna arrived at about 6 for her sleep over and Jan made dinner for her, for me and for herself. Very tasty! Then Keanna and I took crackers out on the back deck and Keanna called geese and ducks and fed them until the sun set over the trees in the distance. Then we came back into the house and Jan helped her get ready for bed, shower, brushed her hair, the whole process. Now Keanna is sleeping (hope hope). It is so special to have her come to visit and she calls herself Grammy's best medicine. She kept popping in on Grammy and I could hear the happy exchanges from the baby monitors I have on the lower level so I can hear if Nan needs anything. In addition to the things I have mentioned Jan also did laundry, changed Nan's sheets and in general helped in every way.
We found out good news today, the blood work from monday showed good creatins, 2.3, hemoglobin at 9.5, potassasium at 4, all are good numbers. Our present challenges are ongoing nausea and leg/foot pain on the left side. How would like to see these get better. The doctor thinks the nausea will get better now that the heavy duty antibiotics we have been giving every day are over. If this is like last time by the second day of the special antibiotics the foot pain went away. We can only hope and pray that we can repeat that miracle.
So a lot has happened today but Nan will probably remember this day as the day she and Jan watched movies and the constant pain she endured.
I'm glad that the Sabbath hours have arrived. I long for the days when we could go to Sabbath School and Church, potluck and then to the park or home for a nap afterwards but those days seem a long ways off right now. Yet we have things to be thankful for. Tonight we are very thankful for Jan who took time out of a busy schedule and traveled here to spend long hours working and healing. Thank you Jan and Ann for your help in getting her here. We deeply appreciate her time with us.
I spent time at the bank shifting money today to get the accounts into the black. Without the funds resting in the recovery account I could not be in the black this evening. Of course I need thousands to cover all the bills I need to pay but tonight at least we are not overdrawn. Thank you for that.
We are fast approaching the year anniversary of Nan's surgery, June 6. We are thankful for every day we have had this year due to that surgery and the miracle team Dr. Bertagnolli had assembled. Life is not easy but it has given us many blessings and wonderful moments.
Please pray for the foot pain, for the nausea and for Nan's general health and recovery.

Thank you very much,

love

tim and nan and jan
s

Nan is ready for it to get better!

Dear Family and Friends,
Today is ending up rough again. Nan has been vomiting several times since late afternoon and evening. She is very tired of it. Tomorrow is the last day of antibiotics and we hope, we pray that her tummy will settle down. We finally gave her a small Adavan a few minutes ago to see if we can calm things down. Jan has been an angel all day helping her, talking to her, doing things for her and creating many happy moments. They laughed and snoozed.
Today I got to talk with Dr. Ganey about several points of concern. We are seeing Dr. Melynk tomorrow morning at 9 and hope to get him to order a bed from Apria so Nan can be more comfortable, hope to get his read on the constant nausea, hope to get the paperwork started for AMN107 and try to solve the intense food pain. We'll have to get going early since it takes a bit to get Nan up and dressed ready to travel.
Tomorrow evening Keanna is having a sleep over and Jan being here will help a lot with that. She has the energy to keep up with this precious little person.
In many ways Nan had a happy day and was able to talk on her cell phone to Pam. Pams calls are very interesting right now with Ryan climbing El Capitan, we hear he should be done tonight and safely back in a cabin.
I did a relocation appraisal in Stockton this morning, then back to get the antibiotic in since when I tried early this morning the lumen I use, little tube into her artery, was blocked. We had to have Terry come use her special medical rotorooter and in a few minutes she had the line cleared and it was working again. So the antibiotic got started later than usual today and so did the hydration as it had to wait until the line was clear.
Nan is so tired of the nausea. She has nothing left inside to throw up. Is she dehydrated? Is the potassium low? What else could be causing it? We use the best meds available, zophram, kitril and tonight Adavan.
I am once again facing some pretty incredible money issues, mainly I need a lot of it and quickly. Checks have not been coming in the mail at all this week which is a pretty bleak situation. could you ask God to sprinkle a bit of His mighty blessings our way. I know Nan would sure appreciate a relief from nausea and a return to being able to eat. She has basically eaten no food since she came home from the hospital a full week ago.
So this evening please pray for our dear Nan, for her foot with some pain, for her tummy which can't get settled and for availability of a new med. which could control her tumors.

We thank God for Jan and the joy she has brought us, plus a very wonderful dinner for me tonight, so sorry Nan could not enjoy it also.

love

tim and nan and jan

A better day with help from a host of friends

Dear Family and Friends,
This has been a whirlwind day for Nan. She had a very good night of rest hardly waking at all. Sylvia Ahn arrived at 10:30 to offer help and friendship, she and Nan tackled the tummy dressing, watched TV, talked, napped and passed the time. Together they made their way downstairs for awhile but the foot starting hurting and Nan wisely decided she had better get back upstairs before the foot pain prevented her from putting weight on it. So back to the sleep number bed. Sylvia had to leave at 4 but by then Mary had already been to visit and offered to return at 4 which she did. She stayed with nan until we arrived from the airport, yes Jan is here from Denver, she escaped rain to come to sunny California and be with her "sister" Nan. Nan was delighted to see her arrive. Loree had also been kind enough to work here in the office today instead of at her home office so Nan was well covered with thoughtful attention.
Jan had a nice flight but was starving due to lack of food in a very busy day in Denver before leaving. We hit a Burger King on the way home and brought Nan an icee which I noticed is now gone, go Nan! We had not been home long when Nikki and Keanna came to visit. Nan enjoyed seeing the dynamic duo and Jan entertained Keanna or was it the other way around. Jan's daughter Kara is graduating from 8th grade in less than a week, exciting stuff indeed.
Jan is now settled in looking forward to sleeping in a bit in the morning. Tomorrow they will watch movies, snooze, try to move about and try to gain strength. Today has had less nausea and vomiting and Nan has really enjoyed all the company she has had.
I drove to SF to meet a very nice couple with a home on a hillside that was almost too steep for the little bug to climb. Sweet people, then to Oakland to yet another sweet couple and then to the airport to collect Jan.
I tried to reach our doctor today but when he called back I was out of cell range, bummer. We see a doctor on friday morning at 9 am here in Antioch.
So its been a busy one and Nan has been lifted by the love of her family and friends, what a blessing to not be alone when you don't feel great.
Thanks to Sylvia for her help today, to Mary for her visits, to Loree for her watchful eye and advice on the fish tank, to Nikki and Keanna for their joyful visit and to Jan for taking time out of her life to share in ours. Thank you Lord for your blessings.

Please pray specifically that nan's foot and thigh pain can be relieved, that her GI will begin to work again and that the nausea will pass.

Thank you so much for your prayers and concern.

love

tim and nan and jan

A very sleepy day

Dear Friends and Family,
Its about 11 pm and I'm listening to the sound from Nan's TV upstairs. She likes to go to sleep with the TV on and since I have monitors in two places downstairs one tends to hear the program Nan has on. This one is the movie 51 dates or something like that.
Nan did not come downstairs today, her left foot and thigh hurt so much she could not support her weight when she tried to stand, she did make it over to her recliner upstairs for awhile but then back to bed. Constant nausea is with her. We finished one of the antibiotics today and were very glad to see the end of it hoping that without it in her system perhaps she can start to feel better.
Barbara came from our Tracy SDA church family today and spent the day with Nan. She helped Nan soak her hurting foot in some warm water which seems to help a bit. Sharon suggested a hot pad so when I got home I got it and she has had it on since and is getting some relief from it. Nan had many phone calls this afternoon from family and friends, from the pharmacist at Critical Care confirming tomorrows shipment of new TPN and supplies. Jason, Nikki and Jo all called to say hi. What a difference it makes for Nan to hear from family and friends, what lift it is. We want to say a huge thankyou to Barbara for coming to be with Nan today. I hit the road when she arrived and did an appraisal for a cute little place in Merced, tree lined streets and all. Then back through traffic to home and Nan. She was glad to see me back.
Pam has called a couple times today to check in and to give us progress reports on Ryan who is climbing El Capitan, he is actually camped on the face tonight, left earth with a 90 lb pack on his back. Pam is staying in a little tent nearby and has watched him climb most of the day. This business of parenting never seems to get easier, imagine your son or daughter on the face of El Capitan tonight, yikes. May the good Lord protect him as he climbs.
We received a kind call from Sylvia today, she and Steve have done so much for our family over the years and she continues to read our minds and know just when we need a boost. Not only did she clean house for us to come home to but she is coming tomorrow to be a friend to nan while I go do some work in Vallejo, SF and perhaps Oakland, then I pick up Jan at the Oakland Airport at 4 and head home through traffic to Nan. Thanks in advance Sylvia for your help and company for Nan tomorrow.
I've been getting tiny emails from Art and Connie who are in Greece. Art says they are well and having a good time and getting to know each other better and better. There is nothing like travel to get to know others better.
I'm going to bed, since I started this blog I heard a tiny voice say "oh no" so I raced up the stairs to find that Nan had picked up her little throw up tupperware and it slipped out of her fingers right into the trash beside the bed. She was thinking she needed it. I went ahead and gave her a dose of Zophram IV push in an attempt to try to head off more vomiting.
Please pray for Nan when you read this, pray that God will help solve the vomiting, give her strength to enjoy Jan's visit and help the pain in her thigh and foot subside so she can walk about again.
On the tumor front our friend Irene was able to make contact and get us connected to Jerry Call, a fellow GISTer, actually his wife has GIST. He is an expert on many aspects of GIST and was able to email a wonderful list of steps to take so nan might be able to have a drug that is still in testing and trial, AMN107, on a compassionate basis. There are several steps to take but if our local doctor will help we just might be able to get this drug that Nan needs which might half her tumor growth without having to travel to UCLA when the trial begins in a month or more. It is certainly worth pursuing and we intend to do everything we can to get the drug for Nan as soon as possible. Thank you Irene for your persistent help today.
So now its time to rest and sleep. I hope Nan can do both.
Thank you Lord for this day, may we have many more according to your eternal plan and mercy.

with love

tim and nan
ps the wound care lady finally made it today, a day late and took forever but Nan got the care she needed.

Wading through the antibiotics...not fun at all

Dear Family and Friends,
Its 10:23 and Nan is settling in with her TPN going full blast, antibiotic just finishing up and the need for sleep overtaking her. I'm sitting in the front of my office air conditioner enjoying cool breezes. I tend to sort of get tense and warm when I am working with the medical stuff for Nan, always have, I think its the fear of doing something wrong for her care.
Terry Hall came at 8 this morning and for the first time ever Nan was not downstairs in her recliner when Terry came in. She found Nan mostly asleep and not very verbal but the vitals very very good, good blood pressure for Nan, normal heart rate, no temperature. She was concerned about Nan's overall condition. She took blood so we will get results sometime tomorrow or the next day from the blood work.
We did our second hydration today around noon after doing both antibiotics and changing her dressings. John Muir Home Health Care was supposed to send a nurse today but after many phone calls we discovered that they messed up and did not assign anyone for today after all. The wound has been putting out a lot less fluid lately, probably because Nan's body is not so over hydrated like it was before. We could always hope that the wound was healing itself and would dry up.
We heard back from Dr. Morgan at Dana Farber Cancer Institute in Boston. After reviewing the scans he said that there has been some grown, not a lot but some. He suggests that it might be time to switch to a different medicine as the Gleevec has failed to hold the tumors at bay. He says his first choice would be AMN107 which he thought was available at City of Hope but Dr. Chow at City of Hope says they do not have that trial there. So we need to pursue where the trial is and if Nan can qualify with the creatin levels she has. He also suggested another drug to try but says people on it don't like its effects very much.
Nan slept until about 1:30 today and then asked to come downstairs. we made the move down and she settled in her chair with a blanket. It was a warm afternoon and she watched TV, talked on the phone, read cards and sorted the mail but in general felt pretty rough all afternoon. She tried some greek olives but after an hour or so lost them along with the water she had been sipping. At 4 I had to leave for Stockton to do a job and she felt she would be fine right there in her chair. While I was out I found a burger king and brought home a icee but later in the evening she lost some of the icee too.
As I got home Nikki and Keanna were in the driveway with food and smiles. They brought joy to Nan as Keanna worked on her food and of course about a 100 other things too. Hide and Seek, play the piano, do puppet shows, you name it. She is enjoying being 4 very much. Nan smiles when Keanna is here, how could you not smile, she is such joy. Nikki got a shock. She was going off a clock we have near the wet bar, well we have not set that clock for the new time and Nikki thought it was 7 and it was 8, Keanna's bedtime. Oops, I changed the clock so no more mishaps like that. After Nikki left we watched a little TV, got a new colostomy bag for nan to put on, a new nightgown and then she decided she wanted to go up to bed. After she settled in upstairs she suddenly felt much better and relaxed. Nice way to end the day.
She is so looking forward to Jan's visit which will start Wednesday afternoon at 4 when I pick her up at the Oakland Airport. Tomorrow Barbara from our church in Tracy is coming to spend the afternoon with Nan and I'm heading out to do an appraisal that the nice owners have waited three weeks for me to do.
Please pray for Nan's GI tract to settle down and for much less nausea. She is so beat down with fatigue and nausea that she can hardly make it through the day, much less enjoy the day. Tomorrow morning is the last of one of the antibiotics and then there are only 4 days more of the other one. We hope, we pray that when the antibiotics end that infection does not rear its ugly head again, we also pray that she will begin to feel much better at that point as well.
Thank you for your prayers. We are happy to report that Troy's back surgery seems to have gone well in Texas this morning.
love

tim and nan

Dear Family and Friends,

9:40, Nan is in her faithful recliner watching What Not to Wear, trying to manage all her pills and yet not lose things. Today has seen real progress, tiny steps but progress just the same. Jason and Jo spent the night which is always a treat to have your kids come home again. I got up early while everyone was asleep and wrote and emailed out a report that was promised last Thursday. Then Jason came down and we made plans for breakfast, he offered to make the Belgium Waffles. First he and Jo had to make a run to get eggs and Starbucks. It took awhile to get out of Starbucks on Mothers day morning. Jason whipped the waffles out fast. Nan however could handle the smell of food so stayed behind her closed door upstairs. After we ate we opened the doors and cleared the air. Nan got up and came down. What that means is she turns and slips off the bed onto her feet, then walks from the bedroom to her stair chair, rides down and then walks from the stairs in the living room through the dining room, down the 3 steps to the family room and then on to her chair. She settled into her chair and Jason put the heated blanket over her, Starr joined her too. We talked baby, talked weather, talked past trips, talked about Jason's recent trip to Washington DC and New York, Jo's workload with her 11 eager kindergartens and we all watched little Timothy try to kick his way to freedom.

Nikki and Keanna arrived having fed and said good bye to Steve's mom and grandmother. They were on their way back to Apple Valley in Southern California. Nikki and Jo got their heads together about baby things and explored web sites together on the laptop, Jason snoozed, I played with Keanna and then Jason played with Keanna, then to the deck to blow bubbles with Keanna, then hide a seek with Keanna, then play the piano with Keanna. We watched a couple movies, Princess Bride and RV. Then all too soon Jason and Jo had to leave to get back for campus watch duty this evening and Nikki and Keanna had to leave too. It was too quiet and Mom was ready to rest. So she headed up to the bedroom where she settled in.

When I got up this morning I was so concerned about moms repeated vomiting episodes this morning that I called Terry the nurse who directed me to Nina, the on call pharmacist with Critical Care Home Health, then called Dr. Ganey who gave the order for some basic hydration for Nan. It was my opinion that she was a bit too dry because the TPN volume has been cut back by a 1/3 and she has not been able to drink due to continual nausea. The doctor agreed and based on my description of the urine color, pretty dark he ordered 500 ccs of hydration. Amazingly before noon it was at the door being delivered. I figured out to hang it and soon nan was getting hydration and the next time I checked the bags the color was improving and volume was much better as well. It appears to be that about the time the kids had to leave mom was beginning to do a little bit better. After she went to bed I came down and went to work writing appraisals. I called Longs and worked out my missing meds and arranged to pick them up before 6. At 5:30 Nan was still sleeping very nicely so I left her a message on a board beside the bed where I had gone and when I returned I took the board back. She never knew I was even gone. It was cute when she first laid down, she asked if Starr could be with her so I put Starr up on the bed but Starr would not settle down. I could hear Nan yelling at Starr at the top of her voice to quiet down or else. I liked it because she was getting excellent lung exercise. Starr did settle down and stayed the entire time of several hours right beside her mommy. Early evening nan mentioned that she was awake and of course I heard it on the monitor and raced upstairs to find her feeling some better, she was ready to come down and did. She talked to Sharon just before Sharon went to sleep and they had a good conversation. When she came down she let me know she might like some cheese raviolis so I started the water to boil. She had a few pieces of food. She also was finishing up her Coke Icee. When I was in town I thought I would try to surprise her so bought one and put it in the freezer when I got home. It was just right when she came and she drank on it for more than an hour.

Nan just had to wrestle with getting her pills down, not an easy process when the tummy is so upset. We used Kitril today, a different kind of nausea medicine that is given twice a day IV push. I think Nan is slightly better and stronger this evening than last evening. We think the primary reason she feels so rough is the strong antibiotic she is on three times a day. She only has 2 more days on one of the meds and 6 more on the other one. Antibiotics are really tough on her digestive tract and have often caused nausea in the past.

Jan let us know that she very likely can come to visit this Wednesday morning and stay through Sunday, that is wonderful news and Nan is delighted with the prospects.

We have had such blessings this weekend in spite of nan's very rough condition. She was able to be at the party and be comfortable yesterday and enjoyed the kids so much today. She will rest very grateful this evening for the successes of these last two days.

It was nice to have Nan finally get to sleep until she woke up on her own this afternoon. I think she may be finally catching up on all the lost sleep over the past few days. What a very brave trooper she is, if you want to see what courage looks like look to Nan. This family has been blessed with a very strong, quiet and determined lady who lived to care for those she loved. Today was a high day as she got to spend it with these precious souls.

Your prayers have lifted Nan yet she sure needs more lifting, more strength, more hope, more courage that only God can give.

Dr. Morgan, Dana Farber Cancer Institute, Boston has agreed to read the scans and let us know his conclusions and treatment options tomorrow. We will certainly be glad to hear what he thinks. Today I am grateful especially to my family, to Dr. Ganey, To Anita the pharmacist who took time on her way to church to care for Nan's hydration, to Pam for calling in, to Mary for checking in, to Sharon for her calls of courage, to the delivery person who made the delivery on Mothers day of supplies, To Jan for considering coming to visit and to Irene for the ecard she sent, To Yvonne who encouraged me to get my meds and to our Heavenly Father who continues to surprise us with His mercy. My precious children were once again a pillar of strength for us today.

Thank you all

love

tim

Short and sweet

Dear Ones,
Just put mom to bed with a lovenox shot in her hip, new dressing, TPN hooked up and running. We have had a big day. Mom slept until 11:30, came down and used a candy cane to control nausea, dressed at 2:30 for Keanna's big party at the Shipleys. We drove over and found parking, wheeled mom in and she found comfortable recliner, blanket and settled in the watch our girl in action. Steve and Nikki had several family and friends as guests, some with little children and the BBQ going full blast. Nikki and Steve can really entertain and do a great job of it. Keanna opened her many presents and loved every one of them including a cute little book from Irene, thanks Irene for thinking of her. The children played in the spa, the back yard, Keanna's special play room (formerly the living room) and we all had a very good time. Keanna's other grammy and great grammy drove up this morning, are spending the night and then driving back tomorrow sometime. Steves adopted family from Tracy were there and other friends as well. Nan was able to enjoy the whole event, get to see Keanna do her thing and sing Happy Birthday to Keanna. It was a very special event created by Nikki and Steve, one which mom is so glad she did not miss.
After the party Jason and Jo came over and spent the evening with us, we watched a good story on TV, I munched on popcorn, mom had some watermelon which once again stayed down for awhile but she just lost some of it now after she laid down in bed. I think Mom might be getting slightly dehydrated at this point since urine color is getting darker. She has not been able to drink hardly anything since it just comes back up. I am praying for God's intervention for her tonight while we sleep. Jason and Jo brought some beautiful yellow roses and are going to celebrate Mothers day tomorrow morning. Oh that Nan could feel better so she would be able to enjoy this special time even more. It is so good to get to see Jason and Jo again. They are such special people and we are glad that they could come. Jo is a radiant mother to be and is handling the pregnancy very well. Both are excited about the future with little Timothy!
Tomorrow I'll include photos, everyone is in bed tonight and the photos are in their cameras. I was so busy with getting mom ready that I forgot my camcorder and camera too.
I was happy to receive an email from Art and Connie from Greece. They are safe and enjoying a nice trip with friends. Troy Nelson, Sharon and David's son is having surgery on Monday morning on a disk. I think he would appreciate our prayers for he and his family as this needed procedure is done.
I had a very nice phone call from an old friend today, Ann Fargeson (sp), she is wrestling with serious health issues and her call meant a lot to Nan and me. She is urging us to keep the pressure on over the disability money, good advice really.
Well its off to bed for me, this day went better than I expected and of course not as well as I could have hoped. I keep expecting Nan to feel better but so far that has not happened.

Please keep her in the middle of your prayers, she is so precious and so brave and so weak right now. She is the bravest person I know and she deserves every blessing Heaven can spare for her.

Sending our love,

tim and nan and jason and jo

Sabbath morning

Dear Family and Friends,
Its 10 am and Nan is managing to get some more sleep. We kept the doggies out last night, Nan did not feel up to wrestling with Starr even though the warmth she brings is nice usually. The 1 hour IV of antibiotics is going in and the 1/2 one will follow. Last evening after Pam left and after Nan had been asleep for awhile show woke enough to lose some of the watermelon and she just lost some more a few minutes ago. I rushed in a Zophram, a good medicine to control nausea. At this point its primary good effect is to help Nan go back to sleep for awhile. She is profoundly tired and has nearly constant lower back pain in the hospital and now more so since we have come home. Yet in spite of the pain she is managing to get some good sleep in. I'm going to call her doctor pretty soon to see if we can up the Oxycontin from 30 to 40 twice a day to see if that helps with the back pain and also discuss the many episodes of vomiting. She kept some hot tea down yesterday but otherwise everything she asked for, apple slices, piece of baked cheese bread, water all came up. I have some concerns about hydration but we had a decent kidney output last night. We've had a very large output from the colostomy and that usually means we are flushing out much needed potassium. Nikki just called and it was so good to be able to talk to family. She and Steve have been working very hard to get the house ready for the afternoon get together for Keanna's birthday. They lead such busy lives and get so much done, I'm always impressed. Mom and I will try to go over about 3 when most folks should already be there and just stay as long as mom can stand being up. She has been looking forward to this event for weeks and will not want to miss it. She loves Keanna in a very special way, is touched by her drawings, her phone calls, her sweet words when she visits. Keanna is like an angel comes to visit Nan and Nan responds so wonderfully to her as well.
I wish I could report that everything was going well here but I really cannot do that. Once again we find ourselves totally upside down financially. $500 in the business account, not enough to cover yesterdays payroll. House payments are due on the 15th. AMEX wants $1,500 to turn the account back on, Chase Visa plans to take $500 on the 17th to protect our credit rating and so it goes. I plan to talk to people on a list of care givers that come to the house for a few hours a day. Perhaps insurance will pick up the tab and I could then feel better about pursuing my work which is languishing once again. I am out of time getting tax info to Ken to rewrite year 2005 and I desperately need to sign up for the on line courses for my continuing ed since the request for a new license must go in 90 days before my birthday which is August 10.
Fortunately several orders came in yesterday, some are big ticket ones which are nearby which will help income in the future. The fact that Yvonne came yesterday is such a huge help to us. It allowed me to see a property in Richmond that I could not have seen otherwise. Having Mary come too was an added bonus and between the two of them Nan was lifted and felt better when I got home. We had a quiet evening sitting by the fire and Nan had less pain during that time period. When Pam arrived that was a real spirit booster. Pam works too hard, drives herself way to hard and yet finds time to drop in with yummy watermelon. She left about midnight and I was concerned about her driving to Lodi on the levee road at that time of night. Nan got to talk to Sharon last evening and they had a tearful conversation. Nan's emotions were very close to the surface yesterday and have been since we heard about the CT scan and possible new tumor growth. We have yet to hear from Dr. Morgan at Dana Farber to see how he sees things after getting the CT scans. Perhaps he is away on vacation or at meetings. His word means the most to us since he knows the landscape and can consult with Dr. Bertagnolli, the surgeon even to see what she remembers about the inside of Nan's belly. It does seem that Gleevec has begun to fail to control growth of tumor. There are other things we can try but need guidance from our expert as what he thinks should happen next. Our local oncologist has removed the Rapamune from her routine for now since it suppresses the body's healing systems. He feels that the benefit for preventing tumor is less than the negative effect on infection control at this point and we agree. Nan continues to not have a fever and we think the antibiotics are working. Unfortunately antibiotics can really play havoc with her GI system and that could be the reason for the throwing up.
Well enough already. You now know what I know and can probably understand why I am sort of feeling overwhelmed, not knowing what to do first or next. I've seen myself as a problem solver over the years but I'm not doing so well right now. For example, I have two weeks of mail to open and sort sitting in a box, I have reports that need to be written that were promised out on Thursday which I intended to write when we got home from the hospital, they had said that release would be first thing in the morning, but it turned out to be late afternoon so no report writing, then yesterday was pretty much spent in caring for Nan and going to Richmond while Yvonne was here. Today is Sabbath and I want to honor my Lord today. Wow, life gets challenging, add in that one of my meds, the one for high blood pressure is missing, can't find the bottle to reorder anywhere and right now when I get up or lie down my head swims so I know the blood pressure is up a bit.
Well enough already again..... we could use a big dose of your prayers asking God to continue to guide and help in our lives. I am asking God to do a big thing for Nan, whatever He thinks is a big thing. He is a God of miracles and Nan needs His help today.
Thank you for listening, its feels somehow better to tell someone, in the past I've been pretty good at just getting started and once into something it suddenly becomes possible. The current flock of challenges has me back on my heels and I'm finding it hard to know where to start wading into the fray.
Sending love, sending our need for your prayers, sending appreciation for all you have done.

May God be in control of all our lives for His glory and for the good of others!

love

tim and nan

ps I'll blog this evening with a report of how the afternoon went and photos if I can remember to take them.