Nan Mustard's Recovery

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

Monday, July 31, 2006

Home again! We can't believe it.

Dear Family and Friends,

Nan is in bed at home with her beloved Starr at her side. We sure did not expect this outcome when we started this day. I knew we had tests and I thought the hospital would take forever getting them done and then we would wait for results and then we would wait some more. Well when Nan arrived back from her second test this afternoon, the one that had her eating radioactive oatmeal and even liking it, she was so very hungry, well when she got back the doctor had signed her release papers so when Sylvia Ahn, our friend from Tracy arrived in her Honda Odyssey Van it was the perfect way to get Nan home. We said good bye to the wonderful nurses, she grabbed one last delicious hospital meal??

We arrived home about 7:30 and Sylvia helped her get comfortable in first her chair and then her bed. She had a Boost over ice and a glass of milk, some very special crackers that Sylvia gave her and decided she was tired. I'm heading up myself in just a few minutes.

We received an email from our friend Bob Miller who is the treasurer of the Tracy SDA Church. He wanted to let us know that he was sending a check for several thousands of dollars to the Nan's Recovery Fund. I was shocked, I figured that once we were headed home and coming back to start work again that the donated funds would not happen again. It comes at a time when we are just facing some pretty serious bills and I am totally overwhelmed at the timing. I just want to say thank you for the help. I also pledge that as soon as we are up and running again with the business that we will in turn find others to help with their challenges.

So once again God has surprised us with His blessings, Nan getting to come home and feeling much better, a boost financially, cool weather, new orders to begin working on to generate income. I am constantly amazed at His love and His help.

I know there are many hurting people tonight. My heart goes out to them as they struggle through life and death issues. This old world has nothing to offer that lasts but people, family, friends, natures beautys, quiet moments, beautiful music, these are the good reasons to live and prosper. My prayer is that I will never forget God's goodness and presence and that as the crisis we have been living with for months subsides I will not get sucked back into the same old work night and day routine ignoring health, relationships and life itself.

Tonight I ask that you remember us in your prayers as being thankful and very happy. It would be nice to know why Nan was so physically troubled thursday evening. It would be nice to know what to do to avoid it in the future. It would be nice to see her be able to eat and gain some weight and strength and be able to travel again, drive again, shop again.

We send our love and appreciation,

tim and nan

Tests, more tests, blood arrives

Dear Family and Friends,

Nan is resting between tests and is back in her room trying to sleep between IV tower beepers and warnings. Her blood transfusion which started at 4 am this morning is just now completed. Probably the longest transfusion in recorded history and you know what, she is not happy about the time it took. Turns out our sweet traveling nurse applied Tenn standards in the rate of flow which is pretty slow compared to the normal standards of this hospital. When Nan raised the issue around 7 they moved the flow rate up. However when she was taken for her first test today where she got to drink wonderful barium they had to send a nurse along to monitor her vitals since she was still getting blood. She says the barium tastes like lemon and orange rinds mixed with too much sugar, does not sound good to me. Anyway that test is behind us now, they kept her drinking and then shot x rays every 15 minutes. We will find out the results later.

Well since I started this blog things have changed. Hospital Dr. came in and said subject to the results of the tests which he has not seen yet Nan can go home later this afternoon. Well that sort of took our breath away so now I need to get to Oakland and do my appraisals, go home an get the van and load the bed in the back and then come back for her highness. Nan is set to go for another test at 2 pm this afternoon which is about the time I need to leave for Oakland so I'll see her down to the test area and then head to Oakland.

Our roller coaster ride continues, we are very pleased to get to take Nan home yet are of course nervous about it. The last time she was able to be home for 8 hours. We will try to do better this time. At least the weather is pleasing today, nice temp and cool breezes.

Nan is doing well with all of this, at the moment she is sneaking ice chips, a no no for the next test. We had a nice call this morning, it was Michelle, Dr. Bertagnolli's, physician assistant just checking up on Nan and offering to provide anything we need from Boston. We were touched by her call and appreciate it very much.

When we got home Loree's daughters had created a welcome home sign on the garage door for Nan, it was so neat and colorful. We were almost drawn to tears to see it knowing how long we have been away. Thank you girls for your thoughtfulness.

My first appointment today didn't bother to let me know that the buyer had changed his mind and the deal was dead so the appointment was cancelled. Love those wasted moments!! Not worth getting upset over though, just move on.

Nan is looking forward to being able to eat after the next test. She has not been able to eat or drink since midnight and her appetite is certainly back big time. She is looking foward to sitting in her chair, playing with the doggie Starr, working the QVC magic and eating her own choice of food. I look forward to having her beside me as we sit on the deck watching the ducks and the sunset or watching the fish tank that STeve has in such beautiful condition.

Well I need to sign off now and get my actions going. We are sort of making this day up as we move along. So far there are no indications of what is causing Nan's problem but the results from the morning test and the test to come are yet to be made known.

Please keep us in your prayers. This has turned out to be a busy day after all.

We send our love and kind thoughts,

tim and nan

Sunday, July 30, 2006

Sunday evening - still no blood

Dear Family and Friends,

Its about 8 pm and still 24 hours later they have still not located the correct blood for Nan. So she waits. Her endoscopy this morning was inconclusive showing only some inflamation and a possible hernia that the doctor says almost everyone gets. So tomorrow Nan will be once again subjected to a different test, this one involves barium being swallowed and traced through the upper GI and then through the small intestine. Nan has been able to eat watermelon, pineapple, grapes, strawberries, cantelope and sherbert. The Cream of Wheat of not eatible after all, too grainy for Nan's tastes. For lunch she had a grilled cheese with tomato slices on sourdough bread. She has had many herbal teas, milk, Fiji water and ice chips. She has not gotten sick again and other than being sort of sleepy from the meds that were given this morning for the procedure she is doing well.

Jason and Jo came to visit this afternoon. Jo was on her way back to summer school at Pacific Union College near Saint Helena and Jason drove back to their home near Monterey Bay. We loved seeing them and they brought a lovely pillow cover with beaded edges from South Africa for Nan in a gift bag. Our kids treat us so nicely and we love them so very much.

I'm heading out soon to do some work at home before I get back into the field tomorrow to do some serious work. It will seen strange to have Nan having tests here at the hospital and I will be away working. Mid day I can come back from Oakland and check on her for a few hours. God has been good to us and given us some new orders which will generate some income over the next month or so. It will be needed for sure.

Sometimes it seems like we will never get to be normal again, it is getting to be very scary to consider having Nan home with just me caring for her and of course I won't be there all the time which means she will be alone for hours at a time. Perhaps as time passes and she begins to recover her strength it will be less concerning but right now it is worrisome to me.

Nan has appreciated the phone calls and if you call and don't get her she is sleeping and has buried the phone. We are told that tomorrows tests will not involve any sedatives just drinking lovely barium, yuk.

We hope and pray that they will be able to locate blood for Nan's transfusion soon. Her hematocrit is now 22 and her hemoglobin is about 8 so its time. At Boston Amy tried to maintain her blood at 30 and she did much better at that level, perhaps in time Nan's body will recover to the point that she will be able to hold her red cells and generate enough new ones.

I personally will feel better when we can get some more weight on her body, 99 is too low. I think with proper diet, smoothies that her weight will come up rapidly, I certainly hope so.

Tonight we seek your prayers for Nan's recovery, that blood will be located for her transfusion, that tomorrows tests will locate any problem that we need to know about and that she can be released soon. Starr, Lady and I miss her lots.

I want to thank my children for making time to visit their mother, when they walk in she lights up with appreciation and joy. We really enjoy time spent with these talented young people. We are so thankful that we are on this side of the country though we miss the talented and dedicated people of the Brigham and Womens and Dana Farber.

We send our love,

tim and nan

Sunday morning - waiting for blood

Dear Family and Friends,
Just spoke to Nan, she had a good night, slept alot but is still waiting for the blood that was promised yesterday. She has a strange anti-body in her blood and it sometimes makes finding blood difficult. That is the case this time. She has not been able to have anything to eat or drink since midnight due to the upcoming test this morning to scope her digestive tract. She has had so little to eat since last Wednesday, however yesterday she was able to handle Jello, toasted cheese sandwich, watermelon and spaghetti with yummy cheese. So she actually got some calories finally yesterday. Our of all of this comes the good news that she does not have bowel blockage. Which should bode well for the future if we can locate the current problem and find a solution to it.
As I am writing Starr, Nan's pug, is sleeping and snoring in the background. They begged for and got a walk to our little park which is nearby. Starr and Lady love to do the park thing in the morning after which they come home and crash for awhile. They are good company when the house is so quiet.
Nan has a 92 gallon reef tank with salt water, favorite fish and corals, and plenty of other interesting creatures and plant life. We have been battling keeping it from getting too hot. We have a chiller, a small box that cools the water when it gets too warm. Yesterday morning before I drove in to see Nan found me taking the lid off the little device and vacuuming out a whole lot of dog hair from the vanes of the heat exchanger but even after I restarted it the tank remains too hot. This morning I made an interesting discovery, the internal heater for the tank which is supposed to come in when the tank water gets too cold appears to have malfunctioned and was trying to heat the tank while the chiller was trying to cool the tank. Those heaters are touchy and can easily slip up temperature wise and setting wise. Well for the immediate time I unplugged it, won't be needing any heat for several months and amazingly the temp in the tank began to drop.
Our son in law, Steve, is an expert on setting up and maintaining salt water tanks. He is just nearing the end of a long process where he is tearing down his 125 gallon tank, selling the beautiful corals and fish life and moving on to a new adventure. Steve can do anything he sets his mind to. He is full of energy, brilliant and capable of doing a great job over a wide spectrum of life, he is a great wake boarder, excellent landscaper, professional appraiser, knows fish tanks inside and out, is a very hard worker, a tender and caring father who actually cares for Keanna for days at a time when Nikki is traveling for her work. He is the most amazing man I have ever seen and Nan and I have the privilege of having him in our family. I do not mean to suggest that he is perfect, no one is, but he is a very caring and capable human being that we love with all our hearts. We feel very fortunate that he and Nikki found each other years ago and now live nearby.
Well I am doing some basic appraisal research this morning and then heading over to the hospital to be with Nan. We may find out some answers today regarding her upper GI, we certainly hope so.
Amazingly through all of this stuff of the last 3 months Nan remains optomistic, calm, faithful and just keeps looking great. Dr. George and Yvonne Miller, who visited yesterday, remarked on how good she looks. People are amazed at how beautiful she remains in spite of the many dangers and perils she has been through.
Our weather is wonderful right now, 60 degree nights, cool days and it reminds me of why we love CA so much.
Amy, if you happen to still be reading the blog, could you email me directly at We are still considering documenting these last few years and especially the last couple months and Amy, you have information and insight that no one else has. We are thinking of a book which would include a chapter written by Dr. B if she would consider it and a chapter from the ICU if you, Amy, would consider it. We would like the book to be inspirational and give hope to others who may be facing tough odds with cancer.
Well its off to do some research, shower, eat and hit the road. Concord is about 45 minutes away from Discovery Bay where we reside on a sunday and about an hour or more on a workday, traffic everywhere. I have to watch myself here, when I drive like I am in Boston people tend to get offended, don't they know the horn was made to be honked and that red lights were made to be run occasionally.!! Need to be careful to control our risks.
Please continue to pray for Nan, that she can be home soon and really get her recover going while riding her recliner. Please pray that they can locate the cause of the vomiting.

Thanks for reading, for responding and for your continual love,

tim and nan

Saturday, July 29, 2006

A turn for the better, we'll take it.

Dear Family and Friends,
I am writing from a waiting room outside Nan's room. She is heading to lala land after a very big day. When I first spoke to her this morning she told me that her temp was 101.5 and that they had just weighed her and she was 99.6 lbs. I found no good news in either piece of information so I arrived sort of bummed out and expecting nothing good. However when I arrived she was starting to feel better, the temp turned out to be 100.1 and it quickly dropped to normal. The doctor covering the hospital for the weekend was very helpful and willing to refer to a GI specialist and a urologist. He corrected some incorrect info regarding timing of the Gleevec, they had it at a schedule of every 8 hours yet Gleevec needs to be taken with food and needs to be three times a day at mealtimes. He also explained what was being done to help Nan regain her health. He was very helpful. He said that he wanted Nan to try a regular food lunch and shortly later a grilled cheese sandwich and watermelon arrived. Nan ate 1/2 of the sandwich and all the watermelon. She had had jello for breakfast but the broth really caused a burning sensation in her stomach. The cheese sandwich and water melon worked well and she kept them down.
Pam Burgess and her two sweet children came for a visit and brought a cute dolphin table centerpiece and a nice card. Later Nikki and Keanna arrived and were able to stay most of the day, our dear friends George and Yvonne Miller came to visit from Tracy and got us all caught up on the news of the area and the church. Mary from Discovery Bay Travel came mid afternoon and visited for several hours.
Nikki suggested that I go with Keanna and her to eat so we did, while we were there Nan called asking for a small amount of spaghetti. We brought it back and she ate a lot of it, better than the food they had brought to her in the room.
Nan is doing much better this evening, not perfect yet but better. During the day the doctor said that because of a lowering red cell level Nan would receive two units of blood. Well as of a few minutes ago the blood has not yet arrived so perhaps in the morning.
The GI doctor came by for a visit and laid out several possibilities of medical conditions Nan might be suffering from. He arranged for an endoscopy in the morning, I have misspelled it for sure. This process involves sending a very small scope down through her throat into her stomach and just looking around to see if they can find any obvious problem. We are pleased that she will have this procedure done as it may help answer the questions about what is making her lose her cookies. We have also been assured that the radiologist has been contacted regarding the blood in her nephrostomy bags.

So another one of those mixed days but overall positive for Nan. She is tired this evening and will be asleep by the time I get back to the room. We have already had our prayer together. I will be heading home soon. Highlights of this day have been Nan feeling better, Nan eating and keeping it down, Nan calling and asking for spaghetti, visits from Pam, Sheena and Bryce, Nikki and Keanna, Mary, George and Yvonne and the many calls from family and friends. We even got some cards at the house that had been forwarded to us from Brigham and Womens and Nan loved opening them.

Thank you for your prayers for Nan and we would appreciate it if you could keep praying for her as well as many others that needs God's special healing.

We send our love,

tim and nan

Friday, July 28, 2006

A new hospital room, 3107

Dear Friends,
I am writing from Concord, CA this evening sitting in a patient waiting room while Nan sleeps a few steps away.
Last evening Nikki came and cooked dinner, Jason and Jo arrived from different directions and along with Keanna we had a very nice get together. Unfortunately Nan was not able to eat or drink anything. When we went to bed it only got worse. Finally Nan said, its time to go so we loaded up the van and drove to Concord, 45 minutes away and entered a very busy ER. They quickly found her a bed and we spent the entire night in a tiny room in ER. Xrays showed no bowel blockage at all, blood work showed very low magnessium and her heart was not doing too well. She quickly gave her 2 units of magnessium and started IV fluids in at a rate of 250. They had to do two different IV sticks and both blew eventually. Finally at 8:15 this morning they sent her to a room and I drove home to do an inspection that had been set up days ago. After doing my appraisal work I came back and was back by 12:30 this afternoon.
The thinking is at present, Nan has a blocked bile duct or pancreatitus (sp) or a combination of both. They are taking a conserative approach looking to let her body heal up, they think the pancreas may be inflamed and needs to calm down with no food to have to cope with.
We are both in a state of disbelief, after looking forward to coming home for so long, not fully accepting that we are once again in a hospital.
The floor that Nan has been placed on does not allow cell phones at all due to possible interference with the heart monitors. So Nan's phone access is as follows: 925-682-8200, room 3107 bed 2. She has the phone right in the bed with her and loves to have calls. She can only call out in the 925 area code though.
I will be hanging pretty close to her room this weekend, there is a window seat which is large enough for me to stretch out and nap which I intend to do in a few minutes from now.
Once again I need to ask if you would be willing to include Nan in you prayers. I think we need to pray that God will guide the Drs in discovering and treating this condition which keeps Nan from moving about freely, eating and drinking. It is my prayer that God will help us find a real answer to this vomiting reality, help get it solved and allow Nan to move on with getting healthy, gain some weight, gain strength and rejoining normal life. Fortunately she is in no pain, can rest comfortably and can walk just fine, just no food, no liquid, ice chips only.
I will blog again when I can and Nan and I both appreciate your prayers and support so much. We send our love to each of you.

tim and nan
PS, we'd love visitors if you happen to be in the area. Call and we'll give you directions.

Nan is back in the hospital

Dear Family and Friends,
Nan is in the Mt Diablo / John Muir Hospital in Concord. Our family came over last night, Nikki made a great meal and we enjoyed getting together. Nan was not able to eat or drink anything or she would lose it immediatelly. After the kids left we went to bed but around 11 it became clear that we needed to go to ER. We spent the night in ER, both of us got about an hour of sleep. When I left her this morning they were wheeling her to her room which is 3107. Phone number 925 682 8200. What we heard is no cell phones on that floor so she will not be answering her phone. They started fluids immediatelly and did a blood work up. Magnessium was very low and after that was given by IV her heart settled down. Xrays showed no obstruction and a clear functioning bowel and intestine tract.
At this moment they are installed a PICC line in her arm, she is not happy about that let me tell you. They think she has pancreatitus (sp) which they will treat with antibiotics. We know nothing other than the pancreas deals with the fats in food and has something to do with the sugar levels in the blood stream. By tonight we will probably know a lot more about this new wrinkle in Nan's recovery.
I am back home briefly to do some limited appraisal work and then back to the hospital as fast as I can. I guess you know the routine and could guess what I am about to ask, will you pray for this sweet gutsy lady today? Nan is handling it all in stride like always but is very disappointed that she is not at home but in a hospital.
I really wrestled with this new challenge last evening, what does God have in mind for us? Nan and I were bone tired from our trip home and when we were in the hospital we noted that we had been up for 23 hours since the hotel in Providence.
I'll write more when I know more, Please pray that God will be in control today and guide what is done for His glory and our happiness and peace.


tim and nan

Thursday, July 27, 2006

Home but not all is well

Dear Friends,

Nan had a rough day. Our first flight lasted over 5 hours and she was in pure agony by the time we arrived. She fell as she was putting on her sandals in the hotel this morning bruising her leg but also wrenching her back in the process. She braved it through today in spite of extreme pain. In addition since yesterday afternoon she has not been able to keep anything down once again. Tonight she cannot even keep water down. So unless God intervenes very soon we will be heading to a local ER for hours of waiting and questions before getting the IV fluids she needs to rehydrate her body giving it a chance to start working again.
All the planning for the day went smoothly, once again the manager of Budget Rental at Providence helped us as we needed to return a car we had rented at Logan to Providence and we were told the fee would be over $800. I called him on the cell number he gave me last time and he called back. Said he would see what he could do. When we turned in the car today it was only $420 including taxes for two weeks of rental, half what I was quoted last evening on the phone. Thank you Lonny Brown.
Our plane left on time and arrived on time in Vegas where we had an hour to move about and stretch. Then back on for a second flight which was just 1 hour to Oakland. The attendants on both flights were wonderful to us. The second flight had a cancer survivor who insisted on Nan taking 4 pillows, 3 blankets for the limo ride home.
The limo was on time and we loaded our 8 pieces of luggage and Nan was able to lie down. Shortly after we left Oakland we became sick and threw up. Then she slept most of the way home except for some nice phone calls from friends and family. When we got home I changed the sheets and put her to bed. She slept soundly for a couple hours and then was sick again.
Nikki came over and made dinner, a wonderful home cooked meal, thank you Nikki, brought Keanna to play with Grammie, Jason and Jo both arrived from different directions and we all spent the evening together. It was wonderful except Mom feels lousy. We tried Gatoraide, no luck, we tried cold water, no luck, room temp does the best but only for a short while. So either during the night tonight or tomorrow we will be in an ER somewhere near. We know she cannot become low on body fluids or it begins to effect her heart, that is a risk we cannot take. We do not understand why these GI blockages seem to be happening, normal food, normal colostomy output yet a feeling in the stomach that the water is making her bloated and then it comes back up.
This is sure not the way we wanted to come home. I am wound up like a spring right now, we have lots of new appraisal work to do, appointments have been made for tomorrow yet of course Nan comes first, so not sure what to do.
Please pray for Nan tonight. Something is not right inside and no one seems to know what is wrong, I despair if anyone will ever know what is wrong.
Right now I need to stop writing and go be with her. We praise God for bringing us this far and we sure need His divine help tonight and His guidance.
Thanks for your prayers for Nan's safe return and thanks Irene for calling and talking with her. We appreciate your taking time to pray and we sure need it now.
Sending our gratitude,

tim and nan

Wednesday, July 26, 2006

We can almost hear the jet engines winding up

Dear Friends,

We are at a hotel located next to the Providence Airport tonight after a very long day. It started when we left Rick and Roxanna's place around 9 this morning, then the hospital 1 hour 45 minutes later, Michelle met us and checked Nan out, took the PICC line out, removed the vacuum sponge, had Dr. Raul (sp) render his opinion and released Nan to travel home. Then we had to return the huge box of vac sponge supplies to a place they could pick up. Finally it was decided that I should leave the box at the surgery office, well when I tried to walk through the front door of the hospital with the box I was stopped and told all deliveries had to be made through the delivery area to the rear of the hospital we drove around, left Nan in the running car and I dragged the box for what seemed to be blocks of hallways before finding the surgery offices. Then we were free to go find crepes at Harvard Square. We did and ate them in the car with the AC running, hot muggy day and all. Then we headed out for Marilyn's house, made a bad choice of freeways, very slow traffic but finally arrived. While we were driving Nan began to feel ill and by the time we reached Marilyns she was not feeling well at all. After visiting for awhile we drove over to the Providence Airport area and located our hotel, Nan came in and went directly to bed and was asleep very quickly. She had been up about 12 hours and she was totally tired. She insisted I go find food which I did. When I came back she was up to a Boost on ice so she could take her meds. Now we are heading to bed.
We are feeling a mixture of elation at being away and some trepidation about being away. Fortunately the beds in the room are good and I think Nan will sleep well.
We send our love and appreciation to each of you. Please pray that God will guide tomorrow and provide the support and help we need for a safe trip.

love and best wishes,

tim and nan

Leaving Conn.

Dear Family and Friends,
A quick message to let you know we are leaving in a few minutes for Boston. Had a good night, Nan ended up sleeping in the recliner part of the night and is rested and feeling good this morning.
Thanks for remembering her in your prayers today as we go through some final stuff at the hospital and then head to the hotel and Marilyns. We have loved our time here in Conn. at this beautiful place with these gracious and kind people. This is one great! bed and breakfast.

tim and nan

Tuesday, July 25, 2006

Another step closer home....

Dear Friends,

Its nearly 5 pm here in East Lyme. The weather is gradually changing and there is a chance of thunder storms. Humidity is creeping up yet it is still beautiful outside and in the 80s. I just ventured out after Roxanna came home to be with Nan, found the local CVS pharmacy for a couple blood pressure meds. Since I was already in their system it was simple. Made my way back without event and returned a couple QVC packages which contain clothes that no longer fit Nan since the surgery. Until she completely heals we really won't know what size she will end up wearing since right now there is so much healing going on on her tummy that there is no way we could put anything snug around her waist.

When I returned Roxanna had washed her hair and blow dried it, looks great. Then a smoothie later and Nan is once again resting in bed. I used this morning to empty all our suitcases and we decided to donate some things to local causes, packed a suitcase just for the hotel stay on Wednesday night, packed books, CDs, DVDs, clothes, medical supplies in the other 5 suitcases. I think we are ready for the trip, I have all suitcases and her walker already in the car. We leave here in the morning around 8 am for a 10:30 appointment at Dana Farber Cancer Center to get final release for travel, to get vac sponge removed, to get PCCK line removed. Then to Marilyn's to say good bye and to pick up my laundry. Then to a hotel Nan found on sale right at the airport in Providence. We fly out on Thursday at 8:45 and arrive in Vegas at 11. We fly out of Vegas at noon and arrive in Oakland at 1:30. Then limo home. It will be the first time Nan has been home in over 3 and 1/2 months. She looks forward to finally being home, in her recliner, with her doggie, on her back deck, in her own sleep by number bed, visiting with Keanna, Nikki and Steve.
I look forward to mowing the lawn, selling the Fiero, selling the boat, taking loads of junk to the dump, having Dana help us paint the living room, finish the stain of the back deck and overhang, try to do a little work for the company, sell some items in the garage through Ebay or Craigs list, get back to living.
Nan looks forward to have some help from Barbie and Gerry as she considers what clothes to keep and which ones to donate to others. We are also going to need to move Keanna's crib out as she now sleeps in a big people bed, no crib!! Big girl you know.
Our minds are in a state of being on autopilot right now, just hope everything goes well tomorrow and we get that much needed release to travel.
Some thanks are in order I think, Dr. B, Michelle, Travis, Dr. Morgan, Dr. Ng, Trina, Amy, Loren, Heather, Andy and many other very helpful people. I have enjoyed getting to know many of the cleaning people, nurses, cooks, and transport people. Both Dana Farber and Brigham and Womens are excellent institutions with top quality care and people. We believe Nan is alive today due to the level of care she received and God's leading and healing. We are thankful on a daily basis for the Nan blessing!
Yesterday we read through all the cards we have received. We were touched again by the thought put into the selection of the cards and the personal comments that were added to the cards. We are touched by the thoughtfulness by so many in keeping Nan in their thoughts, prayers, on their card lists and sending emails. The financial impact of the 52 day ordeal has been mitigated by the extreme generosity of many of you. Over $9,000 has now been given to Nan's recovery fund. We have used the funds to replace the funds I would normally generate doing appraisals. We normally use those funds to cover travel, business expenses for data, payroll every friday and our own personal home payment and other expenses related to owning a home and a car. We really do not know what we face when we get home financially. Loree has been extremely faithful in using what funds are available to pay all the bills she can pay but gradually we have fallen behind. When we land Nan will continue to be my first priority, to care for her on the level she needs at the time, my second priority will be to let the business community know I am back and hope to help them with their needs. We plan to get a web site going very quickly after we are back and I will be making contact with lenders we have worked for in the past. I do not enjoy making cold calls but in the current lending enviroment we need to clearly state we are in business. I will be working closely with Steve, Heather, Loree, Nate and Ron to begin to pick up my part of the business again. It is due to these dedicated people that I have been able to stay at Nan's side day by day. We will never forget what has been done for us. There are so many people who helped, Pam, Ken and LeAnn, Scott. Thank you one and all.

I will not be able to blog until tomorrow afternoon late since we will be in transit, at the clinic, driving to Rhode Island to Marilyn's and then to the airport hotel. Please pray that all will go according to the divine plan. Nan has mentioned a new spot of sensitivity on her tummy by the wound that is slowly healing, we continue to have much more blood in the right nephrostomy than we would like to see, her lower back hurts badly at times and overall she remains very weak. The next two days may be the toughest days in her life so we really need your prayers.

We have enjoyed this quiet time away from the hospital for a bit of recovery but we sure are not recovered yet to any kind of normal activity on her part yet.

Nan and I both appreciate your being there for us. We hope we can be there for you if and when you need us.

with love

tim and nan

Monday, July 24, 2006

Enjoying the outdoors in CT.

Dear Loyal Friends, Family and Fellow Gisters,

Nan and I are in chaise lounges on the back deck of Rick and Roxanna's lovely home. We are looking out to a bird feeder and have seen a beautiful blue bird, robins, cardinals, sparrows and a very persistant squirrel who has tried everything to get to the seeds in the feeder. He has jumped and ended up holding on with all fours while hanging upside down beneath the feeder, climbed the metal pole and ended up on the top of the feeder where he could not get to the seeds and for a brief moment actually in the right place where he was eating. The back area is upsloped and partially landscaped with beautiful trees, a Christmas tree perfect spruce, Stargazer lillies and many many mature tall trees which provide shade. A stone wall is to the right marking a property line and below it is a solid granite rock about 20 feet high with color growing anyplace that will hold a bit of dirt. Further to the right is a fish pond where several little fogs live. The only sound is the distant hum of a window AC and a constant sound of some sort of bugs in the trees. The sun is trying to make its way through the trees and shafts of light reach us, right now one is lighting up Nan's face and she looks totally lovely. On the rear deck Rick has assembled three different tables, many metal chairs and a stainless steel BBQ which looks very serious, he proved it works last night. What a feast, now the food at the hospital was good but this was even better!!
Nan has had many cups of decaf tea today, three cans of Boost so far, Cream of Wheat for breakfast, Asparagas soup for lunch prepared by chef Tim, yikes, thats the way people end up in a hospital! Saltine crackers, lemonade. Nan has tried on some clothes today, walked around the circle of the interior of the house, read the emails, watched TV and slept in the recliner and slept some in the bed. All of her body systems appear to be working well. We are getting onto our schedule for meds, keeping water and fluids going and limited exercise.
Last night was challenging to Nan since she has been used to a hospital bed for 2 months. She handled it pretty well but could feel pain at times since she is not used to lying flat in bed yet. We both made it through the night though and have had plenty of chances today to catch naps.
This is a very beautiful part of the country. Nan says we are very near to the ocean, everything is green, most homes have been here for a very long time, there are many streams and lakes and hundreds of country roads which are very quaint and easy to get lost on. We are staying in the town of East Lyme. Saybrook, Old Lyme, New London are all nearby. Our weather has been pretty good today, sunny yet not hot at all. To those of you with hot hot temperatures we know you are suffering and we are so sorry for you. We talked to both Nikki and Steve today. Their power was out 25 and 1/2 hours. They survived using good old fashion ingenuity. Keannas pool was set up in their driveway and they spent the afternoon keeping sort of cool that way. Steve went and got the motorhome so he could use the generator to power his frig. He never was able to get the motorhome cool enough inside to stand it, down to about 116. Motorhome ACs are not very good and ours is weaker than most. Nikki and Keanna visited friends homes a few blocks away that had power and that helped. Finally at 7:30 PG&E found a blown fuse in the transformer which sits in front of their home and powers the entire block. They were told that the fuse was large enough to power the 12 homes it serves but several homes now have pools and the pools pushed the power needs over the limit and the fuse blew. Way to plan ahead PG&E.
Roxanna just came home and found us on the back deck enjoying the beauty of this place, Nan was starting to get chilled by the breeze so she is back inside in bed under covers. Roxanna baked some potatoes last night but we all forgot them and when she discovered them later they were very baked. So she is going for it again tonight. She just brought out a plate of chips and alvocado, yummy! This is one Bed and Breakfast you don't want to miss. We appreciate Roxanna and Rick opening their home for us as Nan recovers. I have been sorting things today, deciding which items need to go home and which items can be shared with someone around here. We will come home with 6 suitcases.
Sort of a bummer news item today, Gleevec has been linked to increased heart problems. Gleevec is the targeted cancer drug which has helped Nan in the past with tumors and is being used along with Rapumune to resist tumors from coming back. Really did not need the news flash from researchers who found that mice had heart problems when put on Gleevec. So just one more little challenge to face as we move forward.
We called Ellen who runs Dr. Bertagnolli's office and firmed up an appointment for 10:30 on Wednesday to have the vac sponge removed and to have the PCCK line removed. Also to get an OK for thursday morning travel via Southwest to Vegas and then to home. We hope to line up a limo for the trip home from Oakland. Our one big splurge on the trip and a worthwhile one. This limo company has been great to us over the years. They carried Nan to the plane when shortly after a surgery we had to fly to Texas for Jason's graduation. They did not hit one chuck hole in the street, smooth and perfect. After getting up at around 6:30 on thursday morning, to the airport at 7:30 and on the plane for a 8:45 departure Nan will be very tired when we reach Oakland and finally home.
When I see Nan taking a nap and her face is relaxed I enjoy the moment knowing that she will soon wake up and open those baby blues. Her being here is a precious gift of the Father and I treasure it. We face some hard times in the near future as we try to put our financial life back together again, we face the challenge of my balancing my time between caring for her and doing business, of finding the right balance between rest and exercise, of finding what food work best, of keeping her magnessium and potassium at the right levels, of guarding her hermatocrit, of getting the wound to finish healing at home. Of me learning how to change the wet to dry dressings at least twice a day without doing hard to her recovery. Yes there are challenges but considering what we have already faced I firmly believe the rest is doable somehow. Our friends the Lammerdings who live near Sacramento have offered to come down for a few days to help and that sounds real good to us. We have traveled with them, cruised with them, enjoyed their cabin at Tahoe dozens of times, played games with them, laughed with them, cried with them, yes they are good friends, you know they are good friends when they come to your house and pull weeds, amazing. Hopefully Dana will be able to come to California and help us paint the living room. Nan has a color selected and with Roxanna's input feels really comfortable with it. We hope Sharon can come visit but we know for her to get away is tough because so many people depend on her but we have hopes anyway. We can't wait to see our kids and Keanna, to see Jo's new car, to just be able to relax with the greatest family in the world.

Does it sound like we are anxious to get home? You bet and its all positive.

Please pray that God will keep his protective hand over Nan as we move about, ride in the car, fly, have Dr. visits. She is such a brave lady, 4 bags and tubes to cope with and right now a 5th tube connecting to the vacuum pump. Yet she never complains. She hurts, she gets tired but she never says, why me?

So I sign off for now. Nan and I both live our lives these days with a load of gratitude for your help in every possible way.
we send our love,

tim and nan and roxanna and rick

Sunday, July 23, 2006

Sunday evening in Ct. with Rick and Roxanna

Dear Friends,

Nan left the hospital about 1:30 today. We loaded up our rental car and headed out 9 to end up on 395 which is a beautiful and direct route to East Lyme which is where we are tonight. Rick and Roxanna did a BBQ and included some really good vege meat, burgers and hot dogs. Nan and I both enjoyed our meal very much and have been just laying around this evening watching their plasma TV and fully appreciating not being in a hospital room. Of course it is very frightening to me personally, just hoping and praying that nothing will go wrong for Nan. So far so good. All her systems appear to be working well and she handling food well.

It felt very strange to drive away from Boston, it has been nearly two months where that was home. Now we move back into a more normal life.

Our plan appears to be lay low for a couple days with Nan recovering strength, then back to clinic in Boston, then to a hotel in Providence for the night, then to the plane for home via Vegas so Nan can get up and move around.

Our hearts go out to our kids tonight, Nikki and Steve have been out of power for about 50 hours, have a little generator going to keep their fish tank alive and grabbed the motorhome with its generator to run the frig. The temp was 106 and I feel so sorry for them, how can they sleep in such heat? And that is the weather we are heading into, whoopee!!

Your prayers have covered us for weeks and tonight we would appreciate your remembering Nan that she can get a good nights rest in a normal bed, not a hospital bed. Pray that she will continue to get better and stronger.

Our friends Roger and Carol need our prayers tonight. They have faced some tough challenges in the past 24 hours and they need God's hands over them. We have other friends who desperately need God's blessings as well and I'm sure you have friends who need God's special help as well.

We are thankful tonight for life. Praise God! Thank you Irene for the beautiful CD, we listened as we drove down today, beautiful in every way.

We love each of you and appreciate all you have done.

tim, nan, rick and roxanna

Headed for CT.

Dear Friends and Family,

It is sunday and Nan is READY to leave this place. It is a wonderful blessing to hear her on the phone booking a hotel for Wednesday night, booking our flights on Southwest for thursday, spitting out numbers, discount options. What a wonderful outcome to have her mentially intact, to have her left leg working, to have her heart functioning well, to have her feeling whole and hopeful about the future.

For many of you who have been with me through the blog from the very beginning you know full well what the journey has been like. Nan's recovery has been a miracle, a long struggle, a test of her metal. Each of you has played an important part in this process and we will always appreciate what you have done. We have experienced something that most people will never have to go through, we would never have imagined that we could go through all of this but each step has been possible because of God's hands.

We have no idea what God has in mind for our future but we certainly want to be available to do His will whatever that is. We know we are not the only people facing serious medical issues and we would hope that we can help others as they face impossible odds and frightening times.

Today we hope to collect all the various items sitting in the window ledge, seat Nan in a wheel chair, head to the elevator and to the lobby. I'll run to the car which is parked in a place I've found that is free, been there for a week so far, drive the car up to the front door and load the most beautiful patient in the world. Then we will drive out Highway 9 to Freeway 395 and head south to East Lyme, CT. If Nan wants to stop for lunch we will, if Nan wants to do anything we will. At Roxanna and Ricks Nan will get to sit in the recliner, eat baked potatos for dinner, play with the doggies and relax.

Our weather here is not as warm as the west, mostly clouds and rain, however we'll take some nice dry heat for a change I think.

I'll blog later when our day is over. For now please pray that God will grant us His blessings and a safe trip today.

We send our love and deep appreciation.

tim and nan

Saturday, July 22, 2006

Last day in the hospital !

Dear Family and Friends,

Its Sabbath (saturday) afternoon here in room 15, Nan is doing really great. Today she was given the go ahead for regular food, she has had Cream of Wheat, milk, hot tea, Boost, grilled cheese sandwich, a few frys, cottage cheese, watermelon, water and that is just through lunch. All systems are working well, the blood in her urine is much less now and she is feeling really good. We have walked (run) around the floor twice and are getting ready to do it again. The surgery team was here early today and put the vac. sponge back into the incision wound. She has had her antibiotics and is now off the iv fluids. For now she is supposed to have 2 Lovenox 50 mg shots per day but its 5:30 and she has not had any yet today.

We have talked to Roxanna and have a plan which has us leaving here by noon tomorrow after the last IV of antibiotic. We will drive to Conn. and begin sorting our things, visit with our precious friends and enjoy being out of the hospital after about 50 days of being in. We leave the hospital with so many good memories along with painful ones. We have been treated with such a high level of professional care starting with Dr. Bertagnolli, surgeon, her team, Dr. Bernard, the surgeon who did the bypass to save Nan's leg, the entire ICU team led in our case by Amy, a team of people that saved Nan's life a number of times and caught problems before they became life threatening. I have a new respect for the role dedicated nurses play in patient care. Heather, Loren and Amy are the main names we remember but the entire group including doctors was just plain wonderful. We will measure any care we receive in the future by the high calibre of the ICU here at Brigham and Womens.

We really appreciate the tremendous effort that the Dana Farber people have made to get Nan back on a drug plan to head off future tumors. Dr. Morgan, Dr. Ng, Travis and all the others have been very proactive in the care Nan has received. They have been willing to explain what is being done and given us a good sense that they are there for us in the future.

In reality I have been in the area for about 2 months and Nan has been here nearly 3 and 1/2 months. We have become pretty familiar with this place and have been treated very kindly by the chaplins, the patient coordinator, the social workers and by even the team that keeps the room clean.

Being here in Boston has given Nan the chance to begin again with her recovery. We feel very grateful for how God has led us and extended His healing hand to Nan over and over again. We know we face challenges when we get home but with God's blessings we will built business up again, our son in law Steve has helped out so much with assuming many of the things I normally do, Loree has been a great help with the house, animals, check book, mail, clients, phones and a lot of other things like Nan's Recovery Fund. We have been blessed with help from Heather, Pam, Nate, LeAnn and a host of others like Bob the treasurer of the Tracy SDA church who has handled the funds sent to that address. A special thanks also to John and Karen Cress who forwarded some very special help from the Denver SDA Church. We have been on the receiving end of help in so many ways. When I got home to my hotel last night the message light was blinking. When I went to the desk they handed me a package from Irene Wing, it had the nicest shirt, a CD by Celine Dion and a very nice booklet with messages of hope all centered around the idea of Miracles. Nan and I were both touched by this and the many messages and emails Irene has sent us.

Evening is setting in as I write. I am looking directly out the window at the downtown cityscape. I see the Prudential Building in the distance, it is the highest building in Boston I think and has a TV tower on the top and a fancy resturant at the top, bet the prices are steep up there. Below are the many stores of the Prudential Center and a huge parking lot that goes and goes for blocks, easy to get lost there. I can barely see the harbor as the fog and overcast weather limits visiblity. Yet as I note the computer the temp at home is 106, I think this overcast is looking better all the time.

When I go to the Marriot tonight I will finish packing up, every time one leaves the hospital the nurses pack us with everything they can think we might need, saline, gause pads, needles, paper tape, gloves etc. We have sacks of their generosity already at Roxanna and Ricks and we'll have to figure out what we need and then try to find someone who can use the rest. I don't plan to fly home with anything more than we need. We have books, CDs, movies, clothes, things that we have collected from our stay here. Nan has many items she had while she was living in Conn. while on the cancer trial, now everything has to go home. Fortunately we have many suitcases so we will be OK with it all. We plan to do one splurge on the way home, that is have Finesse Limo Co. pick us up at the airport, that way Nan can lay down for the hour trip home and they drive so carefully and avoid any rough spots. They are great people and have helped us in the past many times.

If all goes well we will fly out of Providence on thursday morning around 8 am which will get us home sometime mid day. We are purposely booking a flight which has a landing and plane change in Vegas so Nan can get up and move about rather than a straight flight of 6 hours without leaving the plane. Of course our trip home is based on how she feels.

It is hard to imagine being home again yet it seems to be on the horizon. We look forward to hooking up with you as soon as Nan is up to it. Her recovery is not yet complete and she needs to build up her strength so she will be alternating between being up in her recliner and resting several times a day.

Our hearts are full of gratitude to our loving Heavenly Father for His kind intervention in Nan's life. Praise God for His blessings!

with love

tim and nan

Friday, July 21, 2006

Friday is looking up

Dear Friends,
Nan is talking on the phone, that is always a good sign. She was doing much better when I got here this morning at around 7 am. Soon after I arrived she wanted to walk so around the floor we went, strong and feeling pretty good. The doctors had already removed the vac. sponge this morning so Nan has a wet to dry on it right now.
A little later in the morning a doctor from interventional radiology came. His visit was very insightful and answered many many questions. For example he explained that when a nephrostomy tube is installed they include a circle of the tubing inside the kidney which can only be released by turning a tiny device which is located down the line on the outside about 8 inches. I always wondered why that device was there. He said it is almost impossible to dislodge the tube out of the back by accident. That gave me some relief because we are concerned about the tubes being accidentially jerked out.
The doctor also told us that if the tubes had been inserted here they would need to be replaced now. That is every three months or so. He also told us that there is a process where the external tubes can be internalized safely. We may consider this in the future, Nan would love to get by without the tubes and bags always in the way.
Dr. Morgan was here with us and explained several things. He went into great lengths to explain how Gleevec worked in resisting tumors and then how Rapumune assisted in resisting tumors. He also insisted that we make an appointment with a high quality surgeon in California, perhaps someone at UCSF or Stanford. He wants us to be "friends" with someone good just in case we need follow up assistance due to the extensive surgery. That is very good advice.
There is general concensus that Nan's current partial blockage is due to the many meds they gave her to try to slow the output of her colostomy. Everything that was done was for her good but it backfired a bit. She is back on a liquid diet and so far has had hot teas, broth, Italian Ice and is doing well. Dr. Bertagnolli was just here and like usual was full of information about the surgery. She gave us the name of the top oncology surgeon at UCSF who is a personal friend and will become our contact when we go home if something needs attention.
It now appears that Nan will be released on sunday from the hospital and we may very likely go directly to Roxanna and Ricks house for a brief stay, then back on Wednesday to see doctors in clinic and then ready to head home on thursday or friday. We will have to see how things go. Nan will need to try solid food tomorrow to see if that works OK. She is really doing much, much better. She was delighted to have a visit from Amy today, our lead ICU nurse. What a great help she and her team was in caring for Nan

Please pray that God will guide us over the next few days. Dr. Bertagolli is doing a seminar in Colorado next week so I think we just saw her for the last time on this trip. We will see her again in two months when we come back for follow up CT scans. We are so thankful to God for his blessings and help in every way. We are very thankful to each of you for your help, cards, emails and financial donations. You have helped us through an impossible situation!

Please have a nice evening, we are being hit by thunder and lightning right now and heavy rain, glad we are not outside right now. Marilyn has put off her trip home back to RI until the weather improves.

Please have a nice evening, we send our love,

tim and nan and marilyn

Thursday, July 20, 2006

Bummer night, bummer day

Dear Friends,
How I wish you could be with us this evening just to have someone to talk to and pray with. Nan had a rough night with constant throwing up and the searing pain that goes with it through her throat and voice box. We starting calling the surgical team at about 6:30 this morning when it became clear that she needed further medical attention. At 8:15 we got confirmation that we could come to the surgery clinic, then we were told to go to ER so we loaded up in the car for an eventful trip, yes I took a wrong turn and cost us 30 minutes as we traveled streets we have never seen and never care to see again. Nan was so wonderfully patient even though hurting and sick, never complained about my lack of direction at all. Finally we happend on the right street and arrived at ER. We went in and after a few minutes of waiting and no signs in sight of when Nan would be seen I called Ellen at Dr. Bertagnolli's office and she got back to me, said Michelle would meet us over at Dana Farber so I loaded Nan back into the car and drove the two blocks to Dana Farber where we went to the adult clinic. Michelle had arranged for Nan to have a blood test and then she would see her in a room there. Well the blood test never happened, they were so backed up with other patients and we finally got a room, Michelle was very persistent. She listened to Nan's tummy and heard good belly sounds, checked out the bags full of blood and urine, listened to her lungs, ask loads of questions, no Nan had no gut pain, Michelle was concerned that the substance Nan was throwing up was the same color as that coming out the colostomy, dark green! Then Michelle went to confer and we were left alone. Nan was on a narrow cot and she went to sleep, I was in her wheel chair and I went to sleep, remember it was a very short night last night of sleep. Finally Michelle came in and said that the CT scan was going to be done at Dana Farber, she thought it would be faster. We headed down to imaging and Nan did so with dread. Remember this is a lady that lost every drink of water she tried to put down all night, now she was going to be asked to drink two full bottles of Ice Tea with special meds in them, I'm told they taste awful. So I watched with admiration as this gutsy lady, sick, weak, freezing cold drank down her first bottle. She had me turn her to the wall so if she lost it others who were doing the same drinking thing would not become sick. Then she faced the next bottle, I watched her play mind games with herself, focus and she did not lose a drop of either bottle, kept it down and about 30 mins later was done with the CT scan and we were on our way via interior walkways and catwalks over to Brigham and Womens to be admitted. Michelle had greased the slids and they were ready for us, yet it took 2 hours for them to locate a private bed for Nan. The first hour was in the wheelchair and an upright chair and believe this, I have done a whole lot of back rubbing today. The second hour two recliners became available and we both laid out and the nice lady brought a warmed blanket for Nan and within seconds she was asleep, I followed shortly thereafter. At around 6 pm we got to room 15 on 15A floor. Private room due to her prior infection and with a recliner, unfortunately it won't recline but I think after I get to it in the sunlight tomorrow it will recline.
We waited for about an hour before Drs came, the ones that came were some of our favorites. Michelle was there again, she has been an angel all day.
The CT showed partial bowel blockage and they believe it could have been caused by the extensive use of Imodium, Benefibre etc over the prior few days to slow the liquid flow from the colostomy. So all such meds are now not being used, the IV they started with went in at a rate of 990. I have never seen anything go into Nan at a rate higher than 150 before. Almost immediatelly the blood flow into her nephrostomy bags began to run urine color and less bloody. Blood tests reveal that in spite of excellent overall numbers yesterday morning this evenings numbers showed mag and potassium both low and her hematocrit had dropped to 25.6 so a unit of blood may be in order as well.
All of this goes to show how delicate Nan is right now. One day of constant throwing up and not being able to keep any fluid or food down and she goes into crisis. This evening her heart was acting up again due to drop in Mag and Potassium. Beats were irregular but as soon as fluids started going in things smoothed out. They have her on a heart monitor for the night anyway and I'm glad they do.
We are both pretty low. Certainly not giving up but 2 days ago Nan was doing so well, felt great, was walking up a storm, climbing stairs and astounding nurses and PT alike, now she is so sick again. During the night I watched her as she reluctantly began to accept that she would have to return to the hospital, it was tough for her, very tough. She has not been home in over 3 and 1/2 months and is missing being normal a whole lot. She is totally grateful for what has been done for her with the surgery but still has emotions and feelings. This evening she appeared like a person hit by a truck, just all the hope and wind knocked out of her. We prayed together before I left and she thanked me.
So what I need most is sleep. Got to share one thing. God keeps blessing in His own sweet ways. We were needing some help with meeting some financial deadlines and a very helpful check arrived just in time once again. Many, many thanks to those of you who have been able to help us during this very unexpected time in our lives. Our entire family thanks each and every one of you for your cards, your email responses, your financial donations and your words of comfort and courage.
Let me just say, this is not easy! I'm not a patient person and being away from what I love, that is making the business work, well it is very hard because a lot of people depend on me. Fortunately I have great people who have stepped up to the plate and really amazed me with their maturity and professionalism. I am grateful to them and to God who blesses them in what they are doing.
Yet I know that I am needed here. I give Nan a level of care that only a private nurse could give, I empty any bags that happen to get full, I rub her feet, her legs, her back, her neck. I make sure her bedside table has spray, hand sanitizer, puffs (thanks Sharon), water, glasses (thank you Roxanna and Sharon), white gloves, cell phone and a pink bucket to throw up in. She needs to be able to reach all these things without moving too much. I make sure her blankets are not tucked in at her feet, she hates that, that her call button and TV control is nearby, that her bed has the right angle to it, that the room is the right temp., that the blinds are closed to keep out early morning light, that her things are safely tucked away. I make sure she gets hugs and kisses, pats and rubs and lots of affirming words. She has given me her best for 36 years and let me tell you Nan knows how to give!!! Its time that I give her my best as well.
As I write Nikki is flying home from her classes in Tenn. So my prayers have been for her to have a safe flight and drive home after she lands. She works with the nicest people, they have sent such thoughtful comments and suggestions on the blog and I love them all.
Tomorrow Marilyn comes to visit. We love to have her and her visit means I have someplace to send my laundry, yea!! Poor Nan has almost no clothes to wear. Everything she has back here is at Roxanna's house in Conn. She has one outfit and the new dresses from Sharon that so far we have not had a chance to try on yet.
Well I am getting very sleepy. PLEASE PRAY THAT NAN WILL HAVE GOOD REST TONIGHT AND THAT SHE CAN FEEL BETTER. We both long to return to our home in CA as soon as it is safe to do so.
Thanks, thanks, thanks for everything!


tim and nan

Heading back to the hospital

Dear Friends
Nan has had a terrible night, could not even keep any water down. She was very brave about the whole thing but we've called the surgery team and are waiting to hear whether we go to ER or Clinic when we get to the hospital. In addition to throwing up everything since mid day yesterday her urine output contains a lot of blood so we really need some help. She arranged some pillows and slept in a nearly upright position. We have no idea what we are facing but we know for sure this was not the plan.
We trust God to know what He is doing and have been asking Him continually to help and heal. We really need your prayers when you get this blog message. As you might expect our spirits are not great but we will face whatever knowing God is in control.
I will blog later when I know more and when Nan does not need my immediate attention.
Thanks for your prayers, your support and your love.

facing the day

tim and nan

Wednesday, July 19, 2006

Nan leaves hospital but not all is well

Dear Friends and Family,

At long last Nan was rolled from room 16 and Brigham and Womens Hospital this afternoon, July 19 at 4 pm. We are overjoyed with that development however she is not feeling well. The feeling that something is caught in her throat was with her this morning where she threw up and again this evening after we got to the hotel where she threw up several times. She kept repeating, I just want to feel good.
This afternoon we left the hospital with our many sacks of assorted items that have collected over the past 46 days. Nan left with a tiny vacuum pump for her wound. I spent the morning collecting prescriptions from various doctors with the help of Trina and Anne Marie. I ended up over at Dana Farber to get the last two prescriptions for Gleevec and Rapamune. Then to the pharmacy but could not locate it per the instructions I had been given so kept walking and finally found it, they said it would be awhile so got a quick sandwich from Rebecca's Cafe, back to get the meds, some won't be there until tomorrow but of course we have to go back tomorrow to have the vac. sponge replaced at the hospital after the visiting nurse comes to the hotel in the morning. Traffic will be tough like it was this morning, during the night a 30 inch water main broke under the main street, Mass. Ave. So this morning the only connecting link I knew to use to get to the hospital was closed. A 20 min. trip to 2 hours. Woke at 6 am and got to Nan at 8:30. This afternoon when we left the hospital we faced the same bad traffic so took a different route which includes a rough road, Nan felt every bump. She was so glad to get to the Marriot and found the bed to be incredibly good. Once she hit the bed it was over an hour before she woke again.
Later she sat up in a pretty good chair and tried to feel better but ended up feeling worst. After she lost it a couple times we ordered room service, sandwich and French Onion soup. Well the soup did not work and she lost that too, lost even with Malox, with Zophram. The sandwich stayed down better and she has had the rest of her meds now and is asleep again.
This has not turned out to be the joyous escape from the hospital we expected. I have been praying all day that God would help her throat and digestive system get over its irritation and let her eat and drink again. Both are vital or she will be back in the hospital again.
Its 11:16 here and I'm heading to bed. We hope and pray for a better day tomorrow.
Please pray for Nan this evening, that she can overcome this problem and get on with her recovery. We are discouraged this evening I think dreading the possiblity that Nan would have to go back into the hospital.
We remember how far we have come and we look to the future. Yet tonight the way still seems dim. Please pray that God will wrap His healing arms around Nan and given her peace, healing and strength.
We send our love and appreciation for everything.

tim and nan
ps Sharon got home safely and was back at work today. Thank you Sharon for all you did for us. We miss you!
Nan enjoyed calls from Nikki and Jason today, they really lift her spirits. Nikki is in training in Tenn. and Jason is at Campmeeting in Soquel near Santa Cruz, CA.

Tuesday, July 18, 2006

Its's official, Nan is leaving room 16, Praise the Lord!

Dear Friends and Family,
After about 45 days here at Brigham and Womens Resort and Spa Nan is checking out. The wonderful lady from Physical Therapy came today and put Nan through her paces. She walked without the walker, did stairs, did her exercises and passed everything. No rehab needed, Nan rules!!
Last evening Sharon and I went to a mall and purchased some dresses for Nan to try, we will probably do that later in the day. They are very nice and we hope some of them fit just right. Nan's doctors were here early this morning and laid out the plan. Nan needs a few more days of two different antibiotics and a smaller vacuum sponge. The patient coordinator, Anna Marie, ordered a small traveling version of the vacuum pump saying it might be 2 to 5 days but she did her magic and the pump was delivered this afternoon to our room. Trina, the nurse practiciner who does her vacuum sponge is arranging the perscriptions we will need to get at the pharmacy and Travis over at Dana Farber is getting the prescriptions we need from them arranged. Sometime tomorrow afternoon we will load this precious lady up and drive the 8.2 miles to our hotel room at Marriot in Quincy which is down Freeway 93. The next day, thursday we will drive back to have the vacuum sponge changed at the surgery clinic and then back to our hotel. A visiting nurse will bring the antibiotics to us each day at the hotel. After I took Sharon to the airport today, yes through the tunnels which have concrete pieces falling from the ceiling, I ended up on Freeway 93 south by accident. Well I decided that I would just go find the hotel so after driving through detours etc I located the Marriot, checked in, looked over our room, 735 and headed back. I timed my return trip up Freeway 93 to Mass Ave to the hospital, about 23 minutes even with some slow traffic. I'll stay there tonight and then back early in the morning to get prescriptions filled, load things in the car and get ready to transport the princess to her new digs. We have the room for 10 days but won't probably need it that long. We are considering seeing if we can visit Roxanna and Rick perhaps on sunday afternoon through Wed. when we see Dr. Bertagnolli in clinic and get our final release to go home. Our going to Roxanna and Ricks depends on how Nan tolerates the ride in the car from here to the hotel and how she feels overall. Sharon kindly purchased a blood pressure device today which measures her blood pressure from around her wrist. That will let us monitor her while at the hotel.
Our emotions are all over the place right now, on one hand we value the safety of this place, no matter what happens Nan receives the care she needs, on the other hand we want to leave the hospital and head home as soon as we can to resume and treasure our lives. It felt very strange to pack my things today in the hotel room, I have lived there for over a month.
Today Nan had me pick up a Falfalla sandwich for her and Sharon at the Galleria across the street. She ate most of it but has suffered with nasea this afternoon, once again it feels like something is stuck in her throat. The throat specialist here has recommended that she have a swallow test with barium when we get home to see if there is something that can be fixed or made better for her for the future.
Overall Nan is stronger than at any time since surgery. She moves about freely but tires easily. Her balance is good, her stability if pretty amazing.
So this evening I am doing some appraisal work and relaxing after running the whole day. Outside is brutal, about 100 with 90% humidity. And of course I had to drag suitcases to the car. Anyway everything has gone smoothly today.
Once again we would like to let you know how much it touches us to have received your support during our crisis. On June 6 our life changed forever, Nan got a new lease on life, a fighting chance, all her tumors removed and now she has recovered enough to venture out on her own. It has been a miraculous time, an amazing time, a tough time, a frightening time and out of it a new kind of faith has been born. We continue to be amazed at the different groups of people that have been faithfully praying for Nan, almost every day we learn of more people who have been praying. Nurses and doctors here at the hospital believe that Nan has "an angel" on her shoulder.
Sharon, Nan's sister in law, arrived at just the right time and has been a great help to us and especially to Nan. They cried together, played together, ate together, played Gin Rummy together. She has touched our lives in a manner that will never be forgotten and Nan and I say thank you Sharon for EVERYTHING you have done to help us get through this time. Everytime we have needed special intervention God has sent someone to help us and we appreciate them all, Sharon, Dana, Roger and Carol, Marilyn and Roxanna, Nikki and Keanna, Jason. Thank you all!
Please pray for our transition, that God will continue to send His blessings.
Thank you each and every one for all you have done. Also a special thank you to our son in law Steve who has worked so hard to keep things going at home and to Loree for covering so many things for us. Soon Loree we will be there, soon.
We hope you have a nice evening.
With love and appreciation,

Tim and Nan

Monday, July 17, 2006

A change of scenery perhaps!

Dear Friends,
Nan is now slipping in and out of sleep after a huge day with good eating, some medical surprises and a walk that was close to a 1/4 of a mile long.

When Dr. Bertagnolli came in she was very impressed with Nan's progress. She pretty much decided that we could skip whoville altogether. At some point this week Nan will be released from the hospital. We will need to come back each day to infusion for a hour or so to get the iv antibiotic for her kidney infection. That should continue through Sat. One of God blessings fell on us this afternoon when we were looking for a new hotel for me to stay at and for us to stay at as soon as Nan is released from the hospital. What happened was we tried a local Marriot but they were sold out as is every other hotel around the hospital. But the guy on the Marriot line started to work for us. He found two hotels in the Marriot chain with availability for the next 7 days or so. We chose Quincy, 8 miles to the south, a brand new hotel with water views. The rate was $209, out of our price range but then he discovered that we were Marriot members and that Nan was a travel agent. So the rate went to $120 a night which is better than any other rate we found in the entire area. Free parking, some special kind of bedding, a couple eating holes and a full gym. So I won't be sleeping in the car after all.

Tomorrow afternoon we have to get Sharon back to the airport for a 4 pm departure. We have loved every minute of her being here. She is consistantly faithful to her Lord, has a great sense of humor, is totally committed to seeing Nan recover and is generous in every way.

This evening Sharon and I went toe Nitak (sp) to a mall, our trip downtown earlier in the day was a waste, we found nothing Nan could wear. Our trip this evening yielded several nice dresses that we think Nan may like, hope, hope. On the way back we were both hungry but did not want to take valuable time at a resturant so we found this hole in the wall pizza place, double parked, got the special, 2 pieces of cheese and a can of soda for $3.00, ate in the care and it was very good pizza.

So tomorrow we find out more about when Nan can be released. She is not on any IVs other than antibiotics for a couple hours a day and the pump for her vac sponge. Her incision wound is healing up so well, we all watched the change of sponges take place today. Sharon was facinated with the whole process.

So having enough fluids in Nan's body is now up to her, no more liquid in the IV so she has drinking water lined up and is already working on it. She is tired, has had a great day and has accomplished everything she set out to do.

We got a couple cards today and appreciate them so much. Thanks Dunstons for lunch and dinner money, that makes such a great difference for us as we buy most everything with cash right now to save the cards. Its an example of how kind everyone has been to us. For your prayers, your thoughts, your emails, your financial help and your calls we THANK YOU.

We send our love, seek His blessings, they come when you don't expect them.


tim and nan and sharon

Powerhouse Nan

Dear Friends,
Nan has been up and at em today. She started this day by walking three times around the circle and then came back to bed. Then she had breakfast and PT came. Nicole suggested Nan walk again and so she did, ended up walking without any support, just walking without walker or anything. Tomorrow its with a cane. Nicole also taught her to do some really good exercises next to the bed which she is to do twice a day. They are so basic and helpful that we will do them faithfully.
When Nan was half way through her walk the patient coordinator found us and was amazed at Nan's improvement, her strength and her fitness. She wondered if Nan really needed to go the rehab hospital at all so that is the new wrinkle, the other issue is some antibiotics that go for a few more days by IV and the vac sponge. Could we go home or to Roxannas with the vacuum sponge in place still? What about the antibiotics? Questions that will have to be answered this afternoon but I think Youville may not happen, not sure. We know that they will change the vac sponge this afternoon, Nan does not look forward to that happening, lots of pain as the shrink wrap comes off the body. Still seems to be working great on the wound.
Sharon and I are about to leave to shop for clothes Nan can wear. She has almost nothing here in Boston and with the new placement of the colostomy above the belt line of the body we will have to come up with new options for Nan to wear. Sharon has some clothes in mind that will work so we are heading downtown to the Prudential Square where there are lots of stores around.
Prayers are working and we sure need the colostomy to slow down. For lunch Nan had me go get grilled cheese sandwiches, peta chips, peach ice tea and watermellon.
Right now we are going to hit the road. We send our love and thank you for your help on all levels.
More blog later when we know more. Pray that God will be in charge today of her future placement.
We send our love,

tim and nan and sharon

Sunday, July 16, 2006

Are we ready for the upcoming week? What will it bring?

Dear Friends and Family,
Well our sunday is winding down. Nan is sleeping after a big excursion which included getting her totally dressed in street clothes, heading down 7 floors to outside air and breezes. After she sat there in the wheel chair watching the pidgeons and enjoying just being outside we came back in to the AuBon Pan where she and Sharon chose a roast beef sandwich, peach ice tea and some peta chips. Then we headed back up to our luxury suite where Nan put back on her jonnie, Sharon tucked her in so she would be warm and she is now asleep. Sharon meanwhile being tired after walking all over again today buying goodies like playing cards, new reading glasses for Nan (they are so cute) and assorted other items is reclined in the chair reading with poor light from the closed blinds on the window. She looks cute with her reading glasses at the tip of her nose and stretched out with a towel wound into a ball behind her head. She has been very helpful and her presence is much appreciated.
This afternoon I used the card that Dana left me to do my laundry. Dana explained to me how to do laundry, not an easy process. To do the laundry you have to have a guy from our hotel walk you over to a special elevator which serves the apartments which go up to the 25th floor. You tip him and he lets you into the elevator and then you stay put until the laundry is done. The actual laundry room is hot HOT H O T but there is a lovely place in the hall by the elevators where AC blows cold, of course you have to stand there with no chair if you want the air. I sat on the floor nearby and read some in my book while the washers slowly did their job, then there were no dryers available but several had stopped and were full of clothes, so tempting to remove them but I'm not willing to make someone upset so I waited until one became available. I hour later the clothes were dry and I folded them and headed back down to the room. Then Nan was calling wondering where I was so I walked quickly back in the very hot and humid temp. to find her ready to go for the ride and to get dressed. It was a wonderful event, to see her dressed, hair done, nails done and she looks so hot. What a total cutie!
First time in clothes in 42 days, now that is something to live with.
We have a partial idea what is to come tomorrow. They will remove the vac sponge and replace it with a smaller one and the doctors are considering allowing Nan to have a swallow test with barium to see if there is anything physically wrong with her ability to swallow food. She often complains of it hanging in her throat. Our big objective for tomorrow is to make the move to Youville. I will believe it when I see them put her into the ambulance to transport her over. I just hope everything goes smoothly.
It is very easy for Nan to get cold right now but she cannot take the weight of the blankets they have here so Sharon is trying different things to get her warm. She put a bengay patch on her neck but that ended up being too cold so now Nan has a towel behind her head to warm it up. Then Sharon put a blanket over the AC / heater outlet, that should be interesting!!
I'm going to put my head back for a nap soon, this chair sleeps pretty well I think. I'm tired, late nights and early morning calls tend to catch up with a person after all.
What have you been doing today? I hope you enjoyed the sun, did chores and spent some good time with your family. Have you ask God for His blessings for you today, they may come in unusual ways, like when Nan feels up to smiling, that is a blessing or all the lights are green going to pick up Sharon, little blessings that make a big difference.
Sharon has signaled across the room that she is ready to go explore her new Bed and Breakfast called the Friendly Inn.
Please have a nice evening and lets all have a very good week. Our daughter Nikki is flying somewhere this week for training for her work. We hope she has a good week and a safe one.
To all we send our love and appreciation.
Please pray that Nan's digestive system will slow down and that she can continue to be stronger and stronger each day.
love to all
tim and nan and sharon

One Busy Sunday - Nan Steps Out

Dear Friends and Family,
It is noon here in room 16, Sharon has been busy today giving Nan a complete pedicure, clipped her nails, soaked her feet, washed her hair, rubbed her feet.
Nan was awake and up at around 7 this morning after a very good night of sleep, doctors took the beta blockers off her orders (finally), doubled up on the Imodium, stopped finger sticks for blood sugar levels, plan to do a throat scan with barium tomorrow morning, plan to change the vacuum sponge tomorrow and still plan for her to get over to Youville tomorrow. We will see....
When I got here bearing a blueberry muffin Nan was already ready to walk so we did. She went around twice covering about 1,000 feet and was wearing her happy shoes, that is special flip flops that Sharon prepares with dozens of ballon. They are super colorful and always bring smiles to the faces of all who see them. Thanks Sharon for the happy shoes.
When Nan got back to the room her breakfast was here so Cream of Wheat, milk disappeared in no time. Our private room is snug but we've found ways to make it work fine. We have a sink with mirrors, a tiled bathroom and a large window with counter from wall to wall. That counter tends to hold everything from M&Ms to clothes, Keannas precious picture, lotion, boxes of tea bags, Pepsi bottles and a few other things. Sharon is reclining in the fully recliner but has tied a sheet to the top so it is always covered, much more comfortable that way, she is reading "Family Blessings" while Nan's bed is in the middle of the room and has a direct view of the flat screen TV and the clock, on my side is a upright chair and the IV tower which has a single bag of fluid going in and the pump for the vacuum sponge. Nan has her trusty tray next to her bed with bottled water, purell hand cleaner, a candy bowel, hot tea, brush and a box of Kleenex. She is watching Trading Spaces, a home improvement show, pretty cute.
Both Nan and Sharon are bugging me to take my pills for the day but so far I have not gotten around to it, soon when I finish this blog. Today I also need to do laundry at the hotel and start packing for my move on tuesday morning, move to somewhere, not sure where yet. Need to look into that for sure.
Today Nan and Sharon are going to play cards, we are going to dress her up in street clothes and take the wheel chair for a spin, outside again to enjoy the fresh air and breezes. I'll probably go to VinnyTs today for take out pasta of some kind, Nan is really ready for some better food. We are also going to give peanut butter toast with applesauce a try. Dana was kind enough to buy peanut butter and I brought good applesauce to the hospital so that might be a winner too. Sharon has great ideas to help the time pass.
Nan's blood pressure has been good today and Sharon just prepared her baked potato with sour cream and butter and salt and it is so good. It is good to see Nan eating again.
So we plug on, hour by hour, day by day trying to facilitate Nans recovery. When we consider where we were right after surgery and where we are now it is night and very bright day. Nan longs for her recliner at home, comfortable, has a heating pad nearby, a place for Starr to sit and sleep, TV shows to watch, naps to take and phone calls to make. We have it all set up so the laptop sits on a tiny table right next to the chair so she can stay in touch with the world. We can definitely see our trip home on the horizon now.
I want to pay tribute to Nan who has fought hard to get well, has endured without complaining, has never lost the goal, flying home, has remained faithful to her Saviour. She is an amazing woman and just keeps surprising me with her spunk. Now when we walk or sit up in a chair its her idea.
Please continue to remember Nan in your prayers. Right now she is eating watermelon, its amazing to see when for so long she was just being fed TPN. I often wondered if she would ever get to eat again and I'm seeing it. Our prayers center around less output from the colostomy right now, food needs to stay in her body longer so she can pull the nutrition from it.
Have a good day, love those around you and know we long to see you all soon.
with love

tim and nan and sharon

Saturday, July 15, 2006

On the move again, Nan escapes 7th floor

Dear Friends,
This has been a good day. Sharon has added a very nice touch with her loving actions and kind words. Sharon walked many blocks searching for gloves for Nan's cold hurting fingers without success but she came back with many other goodies, candy, reading glasses, Dr Pepper, a Harvard Medical School bag to hold every thing. Of course she did not plan to be out walking so she did the whole thing in sandles and her feet hurt tonight.
Nan has sat up for all three meals today. After lunch with the baked potato Nan slept well for several hours. Then she was up and walking again. During the afternoon I migrated down to locate a wheel chair with a tower, found a wide one and brought it to the room, by then she was ready to go. So Heather, our great nurse, unhooked the IV, I loaded the vacuum pump on the tower and we were off, Nan sat on a pillow and had one behind her. Sharon kept her covered to keep her warm and we headed down the hall, down the elevators and out the front door into the warm breezy afternoon. Nan enjoyed seeing the plants along the side of the hospital that Sharon had pointed out and just stopped and enjoyed the gentle breezes for awhile. Finally she started to get cold so we headed back. We then visited the Au Pan food place off the main lobby. She found a bagel which we had toasted, some cut up watermellow, apple struddle, peach ice tea and then headed back to the room. We stopped just inside the door and spread the food. Nan ate all the watermellon, half the bagel, drank the ice tea, then had a hot tea, took her meds and is now back in bed with a much deserved rest in mind. That means she has been up for several hours today in various chairs, she gets tired but she is pushing herself forward. Her hematocrit is dropping, yesterday it was 28, today it is 26 so I would not be suprised to see a unit of blood appear at some point. I am about to take Sharon back to her Victorian bed and breakfast where she can settle in for the night. All in all we have had a good day with phone calls from Keanna, Nikki, Jason, Lammerdings, Mary from travel, her sister in law Linda and others I can't remember.
I would like to ask that you direct your prayers to helping Nan's body do a slower job of processing food so she can gain more nutrition from it. She has a couple kinds of meds in her right now but so far we have not turned a corner on that issue. Her creatins are 1.9, her bun was 20 which is within correct range, her white count is good, red count is low, potassium is within normal range, truly every day things get better and better. She really enjoyed being up for the two hours in the wheel chair, first time she has left the 7th floor in 40 days and 40 nights. She was ready!
We are already planning ideas for tomorrow, perhaps I will go get take out from VinnyTs or something like that. Anything to get her enjoying eating again and to get nutrition in her.
We thank you for caring in so many ways. Have a blessed evening and keep asking God for his special blessings which He wants to shower you with. We have certainly felt some today.
we send our love

tim and nan and sharon

ps Sharon has been so good to Nan today, its amazing to watch!

Saint Sharon has it under control

Dear Friends,
Wait til Sharon sees that heading!!
Nan is doing well today, called me about 6:45 and needed to "get up" so I hurried over with biscuit and cinamon roll. We got her up to take her walk and she burned up the track, twice around and going strong. Picture this, Nan is charging along with her new green plaid walker and I am coming up behind doing a balancing act of keeping the tower from hitting her heels and not lagging behind so IV lines get tight, to loose and she might trip over them. Thats how we walk and I'm always glad to get back without hitting her ankles. She tends not to like things large and steel hitting her ankles.
She came back, sat in the chair, had biscuit, hot tea while I ate the cinamon roll. Then I took off to go get Sharon, another adventure but its easier to see what I am doing direction wise near Harvard Square and where I went 10 times wrong last night in the darkness. One little left turn I kept making over and over needed to be a straight ahead, not turn. Well I was happy to be on the right road this morning that I overshot the yellow Victorian where Sharon stayed. Had to back track and found her having breakfast with fellow residents. Turned out two were from Houston and one from Sharon's home town in Texas. They were talking up a storm, dragged her away to the car and we actually made it back to the hospital in 40 minutes without incident. Nan had finished her Cream of Wheat, milk, more hot tea, had taken her meds and was ready to return for a nap to the good ol bed. She has been up almost 3 hours, thats half the way home on a jet!!!! Sharon rubbed legs, hands, feet which Nan enjoyed very much. We have this good lotion which must feel nice. I have the softest hands in Boston since I have used the stuff so much rubbing Nan down. Leave it to Sharon, she opened the sack of wash clothes and folded them, tidied up the room and got Nan all settled in bed. Nan was asleep in minutes. Then Sharon hit the walking trail looking for a Dr. Pepper or something. Hope she does not get lost. Having family here is such a boost. We have been blessed with visits from Nikki, Keanna, Jason, Dana, Sharon, Roxanna, Marilyn and Roger and Carol who win the award for driving the furtherest. Everyone who has come has had a major impact on both Nan and myself. We have been lifted, encouraged and helped so much by the visits.
When I was with Nan this morning she said she had been thinking about our beloved children, Nikki and Jason. She said she realized that they had come because noone knew for sure if she would survive the ordeal. They she teared up a bit. They came because they wanted to see their beloved mother again, to encourage her along and yes to see her one more time. Gradually what the doctors have told us would happen is happening. Nan is becoming aware of more and more of what she went through and how blessed she is to be alive and doing so well. The doctors have told us that a full awareness of all the facts could take up to a year to happen.
I rose this morning sleepy but very thankful that I was once again able to see, to touch and to be with this precious human being. Both Nan and I talked this morning about what it means to still be here, why God has seen fit to save her life. We both feel we need to be there for others that God will put in our lives.
The two doctors who came in this morning commented that it was so good to see Nan smile. She seemed surprised by that comment but it is very true. Until the middle of this week I don't think she felt like smiling yet, just to much suffering and uncertainty. I am enjoying her smiles, humor and even gentle chides about not doing this or that. It means she is mentally great and physically doing better every day. Nan has complained for years about "things sticking in her throat". The doctors agreed to take another look at the tape of when they used the scope a few weeks ago looking for bleeding, to see if there is something unusual in her digestive tract that causes this feeling. If Nan ignores the warning feeling she usually has to throw up a bit to clear it so the feeling is very real, an indication that something is not quite right. Now that feeling works against her because she needs to eat lots of food and after a few bites she feels that something and has to stop for awhile. She needs to pig out but can't very well do that.
It is sort of scary when I stop to think and find myself thinking of this as home, not home in CA. No way is this home, this is camping out for me and for Nan like being in the military or something. We just need to get home to see our kids, our doggies, Nan's recliner (purchased on the way home from the last surgery 3 years ago), her own bed, her own kitchen with eatible food.
This is a hospital moment I hate yet understand. They are here to do vitals, of course she has been asleep less than an hour and needs her rest but vitals are more important. Numbers are good, blood pressure was 104 over 53, oxygen 99 %, temp 98.4. Now she is trying to go back to sleep again.
People ask us sometimes if we think this will change our lives, I think the answer is yes but I'm not sure how. We once again have the opportunity of starting to rebuild Nan's strength without tumors. It has been over 2 years since the new tumors were belatedly discovered and we have made dozens of trips to cope with them, many trips to City of Hope which is located near Glendale in southern California, sometimes by motorhome and usually by air, plus 27 trips to Concord by car for radiation for one dangerous tumor, dozens and dozens of visits to regular doctors and oncologists, trips to Sacramento the Sutter for stent replacements and consultations. It would be nice to be able to channel some of that energy into visiting friends, having friends over, traveling with our precious kids, visiting people we love in Denver, Idaho, Weed, Sacramento. We know that these tumors have a habit of coming back they have returned at least 6 times since the first one was removed. Our front line of defense this time is Gleevec and Rapamune (sp) which is a combination we have not heard about before. Dr. Morgan thinks this is the best we can do to hold off the return of future tumors and we trust his opinion. He and the team here at Dana Farber know a lot about GIST and see GIST patients every day. We will be returning here to Boston every two months for CT scans and Dr. visits because they know best how to read the scans for trouble.
There are no obvious reasons why Nan cannot rebuild her strength and start doing the things she loves once again, she may end of with pains she did not have before surgery. During surgeries like this sometimes nerves end up being touched or disturbed. When that happens Nan may end up with a dead area that has less feelings or feels strange when it is touched. She has a couple of those areas from the last surgery already and might have more now. Amazingly her pain level from the surgery has been very low. She has had almost NO pain meds since surgery and she is taking none now at all. Up to the surgery she was on 40 mg of oxycotin twice a day plus other things for breakout pain. Now almost no pain and no pain meds. She says the vacuum sponge is sort of creepy as she can feel it pulling her body back together where it was still open. It is amazing how good the wound looks due to the vacuum sponge. Probably another week of that they say.
On this day we rejoice in our blessings, we urge you to ask God for the blessings He has in mind for you. God loves to do good things, to shower little helps and touches to our everyday lives. But we have an enemy that wants to prevent the blessings, gets us so busy that we forget to ask, or so busy trying to solve our own problems instead of include God in the mix. For someone who works hard and trys hard allowing God to be in control almost feels like being lazy, yet there are many things to do, just not try to solve the things that are beyond our control at the minutes.
I am in no position to lecture anyone about anything, I am weak, shallow, thoughtless and undisiplined but I will not give up trying to do what is right and trying to be of help. God has been able to use me in spite of my being a rather poor tool and so I concentrate of what He has done instead of my faults. For years I have not made the best financial decisions. A lot of money has come through my hands and my love for big ticket items like a boat, a motorhome, a home on the lake, a nice car, I have not been responsible like I should have been and now when I need that nice 6 month nest egg financial advisors talk about I found out that my egg lasted about 6 days. Due to your help I think and pray that we are going to make it, I don't pretend that the next few months are going to be easy. When we get home it will be a tough balancing act to be with Nan as much as I can and yet work as hard as possible. Yet I do believe things will work out right.
Nan and I hope you have a good Sabbath day, a good Saturday and that you will enjoy family, friends, projects, camping, whatever, treasure life and buy those flowers for the kitchen table, send that card of thanks for someones kindness, touch a neighbor who needs help, play with the kids or grandkids.
We send our love and appreciation. We wish you were her or we were there. Please continue to pray that Nan's recovery will get moved over to the rehab place on monday and that soon, very soon we can say goodbye to Boston for awhile. All of this is God willing!


tim and nan and sharon