Linda may be home! More likely, she is shuffling kids from someplace to someplace else, doing her thing. Our phone is 425-481-8870.

The Old Stuff!

Bruce's notes from when we first heard.
Bruce's notes from Discovering it again.
Bruce's notes from the first 51 days post transplant...

Day 1217: Wednesday, June 27, 2007
It is very busy again! We have friends from Kauaii, the Stars, visiting, Nancy is up for a month or two. This weekend our nephew Dan Wedge gets married, and he, his fiancee, her sister, and his friend were over for dinner: total count 14. Steve Star is a professional gourmet cook, so the Stars did all the cooking, but it was still a zoo. Most of the rest of two familys show up Friday for the wedding on Sunday. Seattle seemed like a middle ground for the wedding couple, as they live in Denver, Dan's family is from California, and his fiancee's family is from Alaska. Life is full.
Oh yeah, this is about Linda... She is doing fine, plus or minus a little GVHD. We are still navigating a switch to Group Health medical insurance, so she has to pick an Oncologist, and I have to find a Cardiologist.

Day 1133: Thursday, March 29, 2007
It again has been a while. Early in December, Linda and I went to a weekend long seminar in Denver about money. Linda has since started a business, and you can watch her trials and tribulations at her site: WatchMeSoar.

It must be Spring, as my business: BSDesigns is getting busy. I have multiple customers asking for new designs, my main customer Strobe Data, Inc. has me writing software, and they are happy with what they are getting.

Richard is now driving himself all over, which saves Linda lot's of time. He is also getting buried under University recruitment mail. He is currently taking classes at Woodinville High School, the Northshore Homeschool Network, and Cascadia Community College.

Day 1011: Monday, November 27, 2006
On ThanksGiving we had a little extra to be thankful about. The last time we got bad news about leukemia had been three years before. That next six months had been pretty bad, but comparatively it has been great since.

Day 1001: Friday, November 17, 2006
Life continues to be life! There isn't much to report of late. Everybody is pretty much being who they are. We have a new housemate, Julie. She doesn't spend much time around the house. She is a farmer most of the summer, and now she is spending 12 hours a day doing conservation work. I'm going to have to push Richard to get his drivers licence, as it is taking a lot of my and Lindas time taking and getting him, when he can drive himself. I guess we don't have much to complain about, but we still do.

Day 861: Friday, June 30, 2006
Linda left for 10 days with the women of her family in Montana yesterday. Nancy flew up Tuesday, and they took my car to drive off, away from the sunset around 2:30. Linda has been having a touch of trouble with her skin lately and is thinking it might be GVHD. I have been having the same kind of stuff for 40 years, so what is my excuse? It is difficult to tell what is getting old, and what is related to the transplant. Four of the seven of us at the house were throwing up last week, but Richard, Diana, and I were spared. Diana is our new housemate for a few months, till she goes back to school at the University of Idaho. Richard starts a Princeton Review SAT prep course tomorrow. Things in general are doing pretty good.

Day 767: Tuesday, March 28, 2006
It was about a month ago that I took Linda in to Dr. Kraemers office to get a two year Bone Marrow Biopsy. I haven't heard anything, so I guess no news is good news. A couple of weeks ago, both Linda and Richard had the flu, and since they are both better, I guess Linda's immune system is working.

Day 663: Wedsday, December 14, 2005
Yes, it has been quite a while! Life goes on, doesn't it? Am I still counting the days? Not exactly, I had to get out the calculator to find todays number, and discovered the last several were wrong. We have all been doing fine. Richard is learning to drive, but I don't see it much as I drive sticks, and he doesn't as yet. Both Linda and I have had this stupid cough since September, but I think it is starting to slowly wander away.

Next week it is time for a little pay-back, as Linda goes down to San Jose to be with her Mom, Nancy, as she has a mastectomy for breast Cancer. It isn't a particularly nasty version of cancer, but we will worry about it anyway. We owe Nancy so much for all the help she has given us through all this, there just aren't words to say.

We Love You Nancy!!!

Day 489: Thursday, June 23, 2005
How are we doing this week? I would say pretty good overall. Linda took her last dose of cyclosporin, the immune-suppressant on Saturday. This is a Major Milestone! She is still having some symptoms of GVHD, but the plan is to treat the symptoms directly, instead of systemicly. I guess this means we can go back to being our normal sloppy selves, or maybe not.
She is frustrated that her brain doesn't seem to work as well as it used to. We joked that Dr Rogge should give her some smart pills, but I guess he doesn't have any magic bullets either. I seem to recall them warning us there would be things like this when we interviewed at the Hutch before the transplant, but that doesn't make it feel any better. I guess we have to be content with what she can do now, and let go of what she can no longer do. It seems to me there have been some wise words said along those lines, somewhere in the last 50,000 years or so.
Linda's Brother and Sister-in-law, Rick and Jan Wedge will be moving in to take the housemate position, recently vacated by Eric Martin. They have been doing due-diligence on what will be available to them here, as they are both on SSDI. They will be moving up from San Jose in the next couple of weeks.

Day 472: Monday, June 6, 2005
I guess it has been a while since Linda wasn't feeling good. She started feeling cold and tired yesterday afternoon, and was pretty stationary all evening. I am getting the kids off to school. Things have been going reasonably well lately, and it really has been a while since she wasn't feeling well enough to get the kids off. OK, i didn't hang all the way till 8:50 when the bus departs, I talked Brian into walking Robin & Tristan to the bus stop. I then called to remind them to leave at the proper time, which they were in the process of doing when they answered the phone.

Day 468: Thursday, June 2, 2005
Linda had her last Dentist appointment yesterday, so her teeth have officially been repaired from the damage caused by the transplant process. She is going to look into whether we can get the medical insurance to help some with the dental repairs.
She is having some skin problems on her face, and did some research and is not sure of Dr. Kraemers diagnosis. She is going to call him with the results of her research and see if he wants to change his diagnosis and treatment suggestions.

Day 452: Tuesday, May 17, 2005
Linda woke up hurting all over again this morning. I managed to get three of the kids off to school, and had to come back to get Richard later. She was vertical, but still hurting at Noon. Dr. Kraemer had previously told her he wanted to see her when she was hurting, but she won't go.
On another subject, Eric's van left yesterday! He spent three days last week clearing a spot in the blackberries on a vacant lot to hide it in, and several days trying to find his favorite tow truck guy. When they got it over there, they were stopped by a guard from Verizon, next door, so they didn't get to put it there.

Day 445: Tuesday, May 10, 2005
Robert Cray said "But when I woke up this morning I knew everything was wrong... you were still around". Eric was going to be gone first thing yesterday, now first thing today. I think he is getting in his last TV watching and stereo listening before we unplug him.
I started sending in bill payments with notes explaining where I am financially, and why I am so slow paying. This hurts, but it must be done. I am starting the process of choosing which IRA goes next.

Day 444: Monday, May 9, 2005
Things went OK yesterday on Mother's Day. I got up and cooked a nice breakfast, and bought a rose for the table. I sent her an email, and made her a card, and the guys all had something for her.
Unfortunately, I had to spend a lot of time with Eric, the housemate, getting his van ready for moving out. We built a shelf that runs around two sides of the interior to hold his stuff.I think he finished moving his stuff out at around 00:30 this morning. I think the goal for today is to get the van towed somewhere else, off OUR land. We first asked him to leave in January, and I ran out of patience last week. He is welcome to come back for the occasional meal, but he is no longer welcome to live with us.
Linda's tooth decay was largely caused by chemical changes in her mouth from the chemo before the transplant, and drugs used after. I was mistaken in my previous assesment. She told me this morning that she didn't have to get up to take more tylenol in the middle of the night last night. I think this is a first since we started the dental work.

Day 437: Monday, May 2, 2005
As a result of the radiation and such a year ago, Linda's teeth didn't get brushed as well as they might, because it was painful. During that time she started developing some really nasty cavities, which we discovered a while ago. Last Monday, she went in to Dr. Wenker, for two and a half hours to start the repairs. Since then, she has been living on tylenol and ibuprofen, because her teeth hurt. Yesterday, she was getting pain everywhere, but that may be something else.
Friday we had a bit of a scare. We were going to see "The Incredibles" with and at the school, but Richard and Brian were late coming back from their friends. We almost left them behind, but decided to grab the blue van and go find them on their way back. We had just started down 158th Avenue when Richard came around the corner at 160th Street. We met up at about half way, and Linda was explaining to get the bike in the van, when I looked down the street looking for Brian, who should have been right behind. What I saw was a big van stopped crooked in the middle of the street, with someone like Brian getting up off the ground, and the driver of the van jumping out to run around the front of her vehicle.
Brian hadn't been paying lots of attention, didn't stop at the stop sign. The driver assumed that he would stay to the right, but it had been raining for the first time in a while, and the street was like ice. As Brian tried to turn sharper to avoid the van, he lost traction and the bike slid out from under him. At the same time the driver jumped on the brakes of her van, which locked up, and ended up sliding away from Brian, into the middle of the street. The end result was that nothing and no-one was hurt, but Brian got a very "up close and personal" view of her right front tire, and we were having to wade through about an inch of adrenalin, which was flowing everywhere, as we were determined that really everything was OK.

Day 417: Tuesday, April 12, 2005
Last week we had about 1 1/2 crummy days. Luckily, they weren't during the weekend when Linda drove some of the Church Youth Group up to Canada for a Convention. She came back just bubbling, and highly energized.

Day 408: Sunday, April 3, 2005
Today is doing fine, but we had a couple of rockier days this week. Linda was not feeling good on Thursday, and her temperature was around 99.5. I managed to get the kids to school, and Richard back before she was mobile. Saturday, she felt crummy, and slept in till around 11:00. but other than that, things have been pretty smooth. She is getting pretty tired of the crummy days though.

Day 392: Friday, March 18, 2005
While Linda was at the dentist yesterday, the school called to tell me that Robin was sick, and could I please go take him home. He had had some difficulties in the night, but he had seemed OK by time to leave for school.
Oh yeah, this is supposed to be about Linda isn't it? Well, the news from the dentist is that she is set up for seven hour and a half appointments in the next two months. Why, you might ask? It seems that the chemo-therapy and radiation left her teeth a bit open to decay, and she now has nearly continuous cavities all around the bases of most of her molars. the good news is she doesn't need any caps, crowns, root canals, and isn't losing any teeth now, just getting a bunch of fillings.
I guess everybody had kind of a slow morning today. I pried them all out of bed before I left, but Linda only made it to the couch, where she fell asleep again, waking up just at the time to leave to get Tristan off to school. I am not sure whether he made it to school today, or not.

Day 388: Monday, March 14, 2005
Linda seems to be OK, but sleepy. It seems Richard didn't turn in a very required paper at school on Friday. This paper is REQUIRED to get out of 9th grade. We got at least two calls over the weekend inquiring how he was doing on it. Saturday he chose to go to his friends house, so he didn't work on it. He stayed home from church and youth group to work on it yesterday. Linda and he worked on it, with a break for dinner, and another for story from about noon till 1:30AM. Linda got him back up again at 5:00AM to finish it up, and I had to remind them that the bus had aready left at 7:30. I expect they will both be napping this afternoon.

Day 384: Thursday, March 10, 2005
Things have been pretty quiet in Woodinville lately. Linda started to get a fever yesterday, and was a bit warm this morning. I got the kids off to school. She is kind of functioning, but isn't feeling very good. Her visit to Dr. Kraemer on Tuesday went pretty well, but we haven't settled on the Cyclosporin level yet. I think he is back in touch with the Hutch to see what they say.

Day 374: Monday, February 28, 2005
Last night, Linda mentioned that she is feeling her skin! She is just aware of it. This is probably the onset of more GVHD (Graft Versus Host Disease). She has stopped the Cyclosporin taper at 200mg/day for now, till she see's Dr. Kramer.
If I recall correctly, this is not necessarily a bad thing, because what I remember is that mild GVHD tends to go with long term survival. That doesn't make it feel any better, or allow us to get back to fewer medical safety precautions.

Day 364: Friday, February 18, 2005
The Hutch called last night, and told us that the blood, and XRAY they took as we left Wednesday were just fine. Her ANC was back up to 2000, where it should be, and they decided they were correct about the XRAY, it was nipple shadows. That means we are good to go! Hooray, we have successfully negotiated the first year! Now, if we can just get rid of these stupid cold like ailments we both have...

Day 362: Wednesday, February 16, 2005
15:00 Here we are at the SCCA for the long term follow up conference. Here we should find the results of all the tests and exams they have been doing over the last 3 days. Linda commented on the way over that she is more than a little bit anxious to hear what they have to say. When she arrived at the office, she squoze the hand of the teddy bear sitting on my shelf, and we danced to "The Turtles" singing "So happy Together".
Today is a beautiful day in Seattle. I think they moved Mt. Baker to Lynnwood or maybe the Seattle city limits for the day. Visibility must be over 150 miles. I think the weather service would say it was "CAVU", clear and visibility unlimited. These are the days that make the rain endurable.
Dr. Nash arrived at 15:36. Everything looks good except that her neutrophil counts were a bit low. Cytogenetics were normal except one of the things they had identified with Scott. She is classed as being neutropenic with the neutrophil at 890. It didn't appear like the cancer is coming back. The counts were fine in December. It will only a concern if it says low. It could be the virus she had last week. All the other things seem OK. They will take more blood on the way out to check it again. All the GVHD seems fine. They will decrease the cyclosporin by 25mg per dose per week, with being done in six weeks or so. There is some possibility of GVHD flaring. The t-cell counts are normal. The K-cells were low, and the B-cells were a bit low. The Bactrin drug will stop 6 months after the cyclosporin stops.
They will take yet another Xray because they keep seeing something, which they currently think might be a nipple shadow.
Kidney function is a little low. Most every thing except that I have mentioned looks very good. We need to follow the liver function tests as she is tapering the cyclosporin.

Day 360: Monday, February 14, 2005

Happy St. Valentine's Day!

8:30 After an hour and 20 minutes of driving around, Linda and I are waiting at the SCCA for her One Year Check Up!!! Yes folks, we have made it through the most dangerous year. It is supposed to be all down hill from here, although there are sure to be a few bumps along the way.
9:05 The current task is for yet another bone marrow biopsy, and we will hear some of the results on Wednesday. This is the first biopsy since we left the SCCA system in May. Neither of us slept a lot last night. Linda has been getting very nervous about this event, and last night was no different. I think she will settle down now that it is in progress.
9:12 Hey, this time I get to watch the Bone marrow! One year ago today, we started radiation, and had all the fun with Linda taking her meds at the wrong time and getting sick during the radiation treatment. I didn't even remember that we started all this mess on Valentine's Day last year.
11:35 Linda is starting to wake up from the drugs they gave her for the biopsy. We may manage to get out of the recovery area by noon. 11:57 Now we are waiting for them to take a chest XRAY.
14:15 The Doc's have been interviewing Linda for half an hour now, and they just started the physical exam. Basically they say she is looking good! They even expect to try tapering the cyclosporin. Average cyclosporin time is 4 to 5 years.

Day 355: Wednesday, February 9, 2005
Linda is not feeling well again today. I will stay home to get Robin off to school, and probably come back to take Brian to the Orthodontist, and fetch Richard from School. Linda may have the stuff that Tristan had last week. Her stomach feels like it has been holding on to dinner all night. I am afraid she is obsessing about the Hutch thing next week.
I stayed home from work yesterday to build up and debug the board that arrived on Monday. It is alive, and mostly working well. Another board arrived yesterday, and I took them both to the SEVA meeting last night. I started working on this other board almost two years ago. The person it is for kind of sat on it for a year and a quarter. I got tired of waiting for him and did it myself.

Day 352: Sunday, February 6, 2005
Ok, OK! It has been a while. Things have been going about as expected. Linda functions OK about 80% of the time. Last week she had trouble on Monday and on Friday. The week before, Robin had a throw-up bug Thursday night. Tristan came down with it Tuesday night, and was home for the rest of the week. Linda felt crummy Friday thinking she might be getting it, but nothing came of it. Tristan is finally mostly back from it only today. Yesterday he was still not eating much, or interested in much of anything.
Life for me is busier than usual, I think. I spent Friday afternoon repairing fire breathing battery chargers for the local electric go-kart track, Champs Karting. I have two different projects entering debug next week, and at least 3 more to finish before Memorial Day. Life is full!
Linda is getting ready for her one year check up at the Hutch. Nancy is going to come up to keep the place going while Linda spends a whole week over at the Seattle Cancer Care Alliance with appointments pretty much all day, every day.

Day 318: Monday, January 3, 2005

Happy New Year!

Christmas went pretty well, and Linda immediatly escaped to Santa Cruz to play with her friends for 10 days. I understand she gets home tomorrow. We sent Nancy and Eric to the Pacific Northwest Ballet Nutcracker for Christmas, and they came back just bubbling about it. Santa Clause managed to bring a Lego Mindstorms Robotics Invention System to the family, and there has been a lot of robot building over the last week.
New Years Eve was pretty quiet at our house, as we stayed home. Quiet might be the wrong word. Our housemate had his thirteen year old son, Chris, for the holiday, and invited three little girls over for the evening, so their parents could party. Quiet was something it wasn't much, with eight kids. The guys mostly played video games, while the girls did other stuff. We did manage to set off a whole bunch of fireworks, from about 23:40 till 00:30. Brian still has a bunch left over. We finally got the girls shipped off by about 17:50 on the first, almost in time to get Chris back to his Step-Dad at 18:00.

Day 288: Saturday, December 4, 2004
Thanksgiving went fine, although a bit late. I started at 7:15, but I still didn't get the turkey in the BBQ on time. Linda had told everyone that dinner would be at 13:30, without talking to me. OK, so instead of getting the turkey in at 9:00, I made it by 10:45. Apparently the weber was a bit cold, because we didn't get to pull out the bird till just before 16:00. I had called to warn people it would be late, but I had been expecting 15:00.
Linda has had some not so great days of late. Yesterday, she did mostly nothing all day. This morning she tried another taking pills on an empty stomach experiment. She got pretty much the same results as every other time, nausea. I don't think she lost her breakfast, but her stomach was not happy when she got around to eating. She was fine for lunch.
We went out to hunt the wiley christmas tree this morning, and managed to sneak up on an unsuspecting one and kill it, to bring home. After, we had lunch with a bunch of the church folks that went hunting with us, and some that didn't. I got to play with the industrial dish washer! That thing is amazing, ninety seconds to do a load of dishes!
Linda's weight loss program is doing pretty good, as this morning she reported being 50 pounds lighter than the highest she noted in recent history! She is looking lots better. Congratulations to her!

Day 278: Wednesday, November 24, 2004
I was cruel this morning, as I made Linda get up and get the kids off to school, while she had a horrible headache. I called her later to see how she was doing, and things were better if she was horizontal. After Squiggle (virtual Friday), I went to get Richard and drop him at home. At Strobe, I have been chasing a bug for two months, which is very repeatable in Germany, or Australia, but I can't get it to happen in Redmond to save my soul! I am getting extremely frustrated! I really want to get this thing, as it is starting to piss me off.

Day 272: Thursday, November 18, 2004
Things have been reasonably well at the Sherry house of late. Yesterday, Linda appeared to be emulating the cat: She had her early mid morning nap, and her late morning nap, and her early afternoon nap. On top of that she slept fine last night. It could be the effects of the cold, still wandering around. I may have to take a noon nap today.

Day 266: Friday, November 12, 2004
Last week Linda managed to get a massage that had been donated to her. It was given by a Chineese lady who was an MD and Accupuncturist in China. Afterwards, Linda's hip, which has bothered her for years, didn't for several days! Se set up for an Accupuncture treatment yesterday, and that seemed to help the cold she has been developing since Monday or so. She has been coughing alot the last couple of days, so sleep has been a bit hard to find. The Doctors husband did a little massage on Linda's back, and her cough went away for several hours. Besides the Accupuncture, the Doctor gave Linda some Chineese herbs for the cold, and we are having a tough decision to try them or not. Dr. Kraemers thing was to let him know if she wanted to try anything strange, but yesterday whoever she could talk to at the doctors office just wouldn't go there, wouldn't even write down the names for him to check. She has another appointment with the accupuncturist today.

Day 255: Monday, November 1, 2004
Linda wasn't real happy about getting up on Saturday morning, but she did, and when she got back from teaching OWL, early Saturday afternoon, she was BACK. Late saturday afternoon, Richard, Brian, and I went to church to help with the Haunted House, and I got to be the troll under the bridge! The bridge was pinning me to the spot, but I had a great time! On Sunday, after church, we scattered to the four winds, as Brian went with the Meitzners, Richard stayed home to do Geometry, then went to Mathews, Linda, Robin, Tristan, and myself went to Federal Way to see a LEGO convention. After that, Linda and Tris went to Redmond to trick or treat, and Robin and I went to trick or treat with Robins friend Cole, in Lynnwood. What a Zoo!

Day 252: Friday, October 29, 2004
Linda is still feeling punk this morning. She took some tylenolish stuff, and we will see how it goes. In the meantime, I will get the kids off to school. Where is Eric? I can't find him! I hope Linda can crawl out of bed in time to get Richard from school at 10:05. She thinks she might call Dr. Kraemer this morning, but I doubt he would have much to say. Her temperature this morning was 96.7, so she might have a cold, but she doesn't feel that way.

I got a call just before 10:00 asking me to get Richard, which I did. I got back to work and played squiggle at lunch for an hour and a half, then I got a call at 14:30 informing me that Tristan needed a ride home, because he was sick. When I got home, Linda still wasn't up to speed, so I made dinner.

Day 251: Thursday, October 28, 2004
Today was another slow one for Linda. She had gone to Canada to get a flu shot on Monday, and everything appeared fine. This morning, she had a fever of 99.5, and wasn't feeling good at all. I managed to get the kids off to school, and headed off to work. She managed to get up to get Richard at school, just afer 10:00 and they went shopping for some school books. She was having a bit of trouble concentrating, but she made it through. When I got home she was on the couch asleep. I got the dinner ready she had initiated. She didn't manage to wake up to eat with the rest of us, but had some later. We watched Cows with Guns.
She has been doing pretty good on most days that I haven't reported on. Mostly she is fine, if a little wimpy. It is just some days that are like today. I tried to convince her that this is just her body reacting to the flu shot, and maybe I succeeded. Maybe she hasn't taken enough water too.

Day 245: Friday, October 22, 2004
It has been a pretty good week or so. I managed to vacuum the whole house last Saturday, while Linda was taking Robin to his soccer game. We had gone out with Johndude for dinner Friday, I think, and he came over with videos on Sunday evening. Linda is having a little difficulty waking up this morning, but I expect that to wear off soon.

Day 236: Wednesday, October 13, 2004
Linda is having another slow start day. I started breaking in Eric to help getting the kids going in the morning. I left for work at just about the same time they started walking to the bus stop, at 8:35.

Day 235: Tuesday, October 12, 2004
Linda might have something cooking this morning. She has a headache, and is very tired, so I am doing the morning thing today. We won't be doing the bus thing, I will take Brian and Tristan to school, Robin to the Orthodontist, and then to school. Then I think I have to get Richard home from school, before I can go to work.
I sent Brian in to take Mom's temperature, and we will see. 97.8, which is about normal for her. I guess today is just another one of those "post transplant" days. Last time Linda was in to see Dr. Kraemer, he said most everybody who gets a transplant has days when their body just isn't home.

Day 232: Saturday, October 9, 2004
I had meant to update this sooner, but Life is rushing by. Last Sunday, Linda had a big day. We went to church at the normal time, and she stayed to lead a memorial service for Herb Pockell, a lontime member, who died recently. Then she had a sex education class (Our Whole Lives) to teach to the Senior Youth in the late afternoon. She was pretty tired when she got home around 18:30.
Monday the fourth, she was wasted in the morning, and didn't get up till just before noon. I managed to get the kids to school, and Richard back before I headed off to work around 10:30. The rest of the week went pretty well.
As I am typing this, Linda is at the church doing a OWL sleep over, and will be teaching till around 23:00. Tomorrow may be a slow day for her, we will have to see how it goes.

Day 221: Tuesday, September 28, 2004
Last Tuesday was another poor day for Linda, but she took me to the airport on Wednesday afternoon, so I could go to Animal Camp. Animal Camp was great! I didn't think about bills or work or cancer at all. She arrived in perfect time to pick me up on Sunday night, and things so far this week have been pretty good. She was a little slow getting up yesterday, and she had a temperature of 99, but by noon she was alive and well.

Nancy goes home today! ;-(

Linda's Mom Nancy goes home today after about 10 months of keeping us together, and we will miss her greatly. I think it is good that we feel we can survive for a while without her.

Thank you Nancy!!!!!

Day 213: Monday, September 20, 2004
What has been happening in the last 2 1/2 weeks? Linda continues to do pretty well, about 80-90%. Some days she feels bad all day, others she crashes early, but mostly she seems fine. I continue to reminder her that we poisoned her to within an inch of her life in February, and she is likely to feel crummy sometimes. The kids seem to be settling in to school pretty well. This was entertainment weekend I think. It started on Friday, when I got home just before 15:00, and we headed for the Puyallup Fair to see REO Speedwagon and mainly STYX in concert. Richard and Brian went with Linda and myself, and we all had a great time. We were happy to have cheap seats, because the folks with expensive seats got rained on pretty hard during REO Speedwagon. The rain pretty much stopped by the time STYX came on, but we were dry either way. Saturday, Linda and I went to the "The Terminal" at the cheap theatre, and we both liked it. Sunday was Tristan's Birthday, and Nancy took everybody to the "Ringling Brothers, Barnum and Bailey Circus", and we all had a great time there too. I head off to "Animal Camp" on Wednesday afternoon, and I probably won't update this for a while.

Day 194: Wedesday, September 1, 2004
Linda and I managed to head off for the southland around 12:30 Thursday, spent the night in Medford, and arrived in Gualala around 17:00 Friday. We had dinner with Steve Grant, and his new girlfriend Marnie, and breakfast Saturday morning. The party started getting going around 14:00, as people arrived from the Bay area. We had a great time visiting with old friends and workmates till around midnight, and started again around 7:30 Sunday morning, with a lot of folks camping out at Mike and Paula's. The crowd was getting pretty thin by the time we left at about noon.
The trip home was less than perfect, as Linda didn't feel real good, and lost her breakfast in Ft. Bragg. We had to stop another time, but there wasn't much left. Things were a bit better once we hit I5, and I drove till I couldn't anymore in Roseburg, OR. We managed to make it home, with Linda taking more of the driving, arriving around 15:30, so we got to the 18:00 school picnic with plenty of time.
Things seem to be pretty normal just at the moment, as we are getting the kids all settled into their new classes. Richard is doing some regular classes, along with his homeschool network classes. Brian is starting into the Chrysalis School. Robin and Tristan are both doing the PACE program at a regular school.

Day 187: Wedesday, August 25, 2004
Linda is starting to panic about School, which starts a week from today. Getting away could be in doubt, even though I think it would be good for both of us. She is way stressed out. We will have to see what happens. There is now a debate about which vehicle to take. We were taking the Chrysler and trailer, when all the kids were going, but I ASSUMEd that once we made the decision to leave the kids, we would be a little easier on the earth. If we do take the great white whale, we will have to see what it takes to pry me out when we get there.

Day 186: Tuesday, August 24, 2004
Well, it turned out Linda didn't feel very good yesterday. She ended up losing her lunch. It could be because of the antibiotics they started her on or maybe something else, who knows. She was seemingly fine today, except that she is maybe a little grumpy, so maybe she still isn't up to par yet. We have been planning on leaving the kids with Nancy for 6 days this weekend, and we will have to see how it goes. Planned departure date was Thursday, with return on Tuesday.

Day 185: Monday, August 23, 2004
Last week was pretty quiet, till the end. Linda, Maggie the dog, and the guys all disappeared Thursday afternoon to go to Salmon La Sac, camping. After two different panic shipments to the east coast Friday afternoon, I joined them around 21:30 Friday night. We had a pretty good time fooling around in the woods till around 18:30 Saturday, when Linda called me in to look at her line. The entry site was all red, with some red following the line up to her neck where it enters her Jugular vein. It appeared to be getting infected. After much gnashing of teeth, and whining, Linda got into the old blue van, and went back to town. She went to the emergency room, where they stuffed her full of antibiotics and sent her home.
It poured down rain from 2:30 till 5:30, so I didn't get a lot of sleep. Hard rain in the tent-trailer is a pretty noisy affair. I woke up with my back sore, but the guys and I managed to pack up the soggy trailer, and very soggy dog and headed back to town at 10:32, arriving home around 12:45. Of course everything was much better by then, except for my back. For someone used to good seats in Volkswagens for years, the seats in the Chrysler SUCK! My back doesn't like them even when it is feeling good. I almost couldn't get out when we got home. We managed to get all unpacked, and I spent most of the afternoon on the couch.
This morning Linda seemed fine, and I am a bit better.

Day 176:Saturday, August 14, 2004
Earlier in the week Linda spent the night with leslie Schmidt, as kind of a birthing support person. She was there all night, but no joy. she had a little fever (100) last night, and has been sleeping most of the morning. They were schedule to break Leslie's waters this morning, and Leslie called a bit ago, saying she was getting some contractions, but there was nothing to get excited about yet. Rather than going to "Subversive Movie Night" at the church, they all stayed home and watched the Olympics on TV. I ran off to dinner with the MEN. Neither Linda or I had a good nights sleep last night.

Day 171: Monday, August 9, 2004
Saturday, Linda, Diana and I wandered off a little after noon, and ended up at Georgia's Greek Restaurant in the Greenwood neighborhood of Seattle for lunch. I had a Falafel that wasn't as good as Falafel's Drive-In in San Jose, but clearly the best I have had up here. We then went to the new Science-Fiction Museum, which was small, but we all had a good time gawking at all the stuff.
Sunday, I was the only one up when Diana headed for Portland and Powells Books. I was the only one who made it to church, which I did because I had sound duty. Afterwards, I managed to temporarily hook up the TV antenna so Linda could catch the second half of the Blue Angels, and I could catch the rest of the Unlimited Hydroplane Races on the TV. Most of us spent the afternoon watching the boats and the airplanes.

Day 168: Friday, August 6, 2004
Things have been quiet in Lake Wobegone. Linda is doing pretty much fine. She still gets tired in the evenings, but she is working out at the YMCA to build up her stamina, and seems to be improving. Her friend Diana Burnell arrived driving her new car up from California on Wednesday. Last night we went to hear Chinese music at St. Edwards Park. The Group was called "Silk Road Music", and they were very good. Their Pipo player was just incredible. I wasn't very fond of their very classical Chinese Opera. What can I say, I don't like Opera, but they only did one or two songs that way. We did a picnic having stopped at the "Texax Smokehouse BBQ" to pick up dinner. The event was sponsored by KBCS Radio, and we met Johndude there and we all had a good time. John dude does the Friday afternoon show on KBCS.
Tonight Linda and Diana have gone out to dinner with one of Diana's friends.

Day 160: Thursday, July 29, 2004
I apologize, my daily log is getting not so daily. This week has had it's ups and downs, mostly ups. Linda is generally doing pretty good, but her stomach hasn't been happy every day. She has been feeling a little queasy some days, and she gets tired easily. We all survived the weekend camping just fine, and were happy to be out of the heat. Temperatures were in the mid 60's to mid 70's. This was much better than the 105 when I was crawling through Bellevue traffic on the way to Westport. I guess I wasn't in much of a camping or visiting mood for the weekend. I did nap a little on Saturday afternoon, before I cooked dinner for the potluck.
Linda's friend D.J. arrived from Hawaii Monday morning, and they and Nancy have been having a great time visiting. Tonight the four of us left the kids home and went to Tony Roma's for dinner. Linda was getting tired before we left the restaurant, but seems to have perked up since.

Day 154: Friday, July 23, 2004
Nancy is Back! Her plane was a bit late, so she, Linda, and the kids didn't arrive home till after 22:00. I worked on a new prototype BatMan design till about 21:30, then retired to the couch to spend a little time with my book. I think the lights were out by 23:45. I should have been more tired, waking up at 4:00, but I wasn't. About 23:00, Jaymes brought in his fifth adolescent rabbit of the week. He was still munching on it when I finally crashed. As usual, there was about half of it left this morning.

Day 153: Thursday, July 22, 2004
Tuesday, Linda had all the various doctors appointments to deal with. Brian had at least two, and she had one. By the time the afternoon came by, she was feeling pretty crummy. She called to have me do dinner, so when I got home at 18:45, I went into chef mode. I had stopped on the way home to get milk and diner fixings. I caramelized a walla-walla sweet onion, along with some bell peppers, and mixed in sliced polish sausage. Even the kids liked it. Afterwards, I was sent to the video store for the third Matrix movie, which the big guys, Linda and I watched. By the time the movie started Linda was feeling better, having tanked up on water in the late afternoon.
Yesterday, Rachael, from Boston, came by with her son Nathan, and his cousin? for a visit. Linda was doing better, and Rachael sent her out on some errands while she vacuumed and dusted. I had promised Nancy that I would do that but I guess I forgot. Oooops!
Today, Rachael was taking all six kids to the Seattle Center for the day while Linda gets ready for the WUUC campout.

Day 150: Monday, July 19, 2004
Brian is Back! Brian had disappeared to go on a "Coming of Age Journey" three weeks ago, and we got to collect him over the weekend. The weekend was spent reinventing our relationship with him. Richard sat with Tristan, and Robin was out camping with the Meitzners for the weekend. Linda and I were outside pretty much all weekend, and we seem to have survived. I got home Friday night, and found Linda and Richard watching "The Matrix", and we picked up "the Matrix Reloaded" Saturday night on the way home, and were up till midnight watching it. All in all, there wasn't a lot of sleep hanging around our house this weekend. It is good to have everyone home again.

Day 146: Thursday, July 15, 2004
Things have been pretty quiet for a while. I guess there have been some changes, Nancy flew off to Florida, as they are expecting her sister-in-law to pass away soon. This means we are coping by ourselves, and it seems to be going OK so far. Tristan is scheduled for an overnight tonight, so Linda, Richard, Robin and I are going to see "SpiderMan 2" at 17:30. Linda's energy is doing a bit better, and the female difficulties she was having last week seem to have been adequatly delt with by the medication changes they made. All in all, things are going pretty good. Knock on wood.

I guess I forgot to mention the benefit concert that happened last Friday. About 80 people managed to drag themselves to the venue in north Seattle. I think they were all quite happy they did, as it was a very funny evening. It started with Ken, the master of ceremonies asking the audience for a subject. The piano player started playing a tune, and Ken would point to one of the four other cast members, and they would invent a rhyme on the subject, and sing it on the spot. Sometimes they would do a line or two, and sometimes they would only get half a line.
The best part was when they decided to do their gibberish thing. Ken picked a man and a woman, and the woman was sent out of the room, with an escort to make sure she didn't cheat and listen. The man asked the audience for a story, one bit at a time. The resulting story went like this: The Martians landed next to our hero, but they didn't want to be taken to our leader. They wanted a Pecan cookie recipe! Our hero takes off his shoe, and shakes it at them, and a rabbit falls out of it. The aliens were so impressed by this that they opened a black hole in space, and then started doing the "Hokey-Pokey", whereapon the black hole sucked them up, and our hero put his shoe back on. When the woman came back in, it was the man's job to get her to tell this story, but he couldn't use any words, only gibberish. They actually managed to pull this off, and by the end, everybody was rolling in the isles. If you missed it, you missed it. It was a GREAT time. The troupe is local, and play on one of the islands at least once a month. Look for "THE EDGE Improv Comedy Team".

Day 137: Tuesday, July 6, 2004
Things went pretty well for a logical Monday. Linda was doing pretty good all day, and went to her Solutions meeting after dinner. Nancy got a call to inform her that one of her eastern relatives is seriously ill, so she may take a break from us for a while. This isn't exactly the kind of break we were thinking about though. I think we might have to send her home for a while after she is done back there. I suspect that we could probably survive at least till school starts again.

Day 136: Monday, July 5, 2004
Linda wasn't feeling very good most of the day, and spent quite a bit of time searching around for the appropriate health care provider to talk to. We didn't end up going to see anybody, but they did modify the drug coctail she is to take for a while to see if that helps. A couple of movies ended up getting watched over the course of the day. In the afternoon, some of us watched Robin Willliams and Billy Crystal in "Fathers Day", and the little guys and I watched "CaveMan" in the evening before fireworks. I think we finally gave up around 23:00, but there was plenty to keep us going for another hour or two. This was without any from Brian's stuff. Linda was feeling a bit better by the time we started the fireworks, but she and Tristan crashed out 15 or 20 minutes before the rest of us.
Today we got out of the house around 13:30 to go down to the Seattle Center. Mark your calendars, I was wrong! I had thought the "Bite of Seattle" was this weekend, but it isn't for another 2 or three weeks. We had a good time anyway, watching and playing in the fountain, eating carmel corn and cotton candy, then headed up Capitol Hill for dinner. We had dinner at the "Coastal Kitchen". Eric knows the mother of one of the owners, and we were supposed to give a report: GREAT! Linda's energy was pretty much there all day.

Day 135: Sunday, July 4, 2004
I spent Friday in a whirl of spending other peoples money, and I can't remember what happened. Saturday, we all (minus Brian) went to "Boom City" for the annual insanity. I think we all had a great time. It is such a gas being in what seems like a complete buyers market. Boom City is several acres of wall to wall fireworks stands. The competition for business is just incredible. Everything is marked a little under retail, but you seldom pay that. For instance, Richard wanted to spend $30 of his baby-sitting money. We saw a lady marking a nice assortment at $35, so we started talking. She started with the assortment, and threw on about another $25 worth before Richard handed over his $30.
We decided to try one of the restaurants at the Tualalip Casino next door for lunch, as it was nearing 14:00, and Richard had another baby-sitting gig at 16:00. We eventually found the way in, got an escort to the restaurant, had a great lunch, and headed out. Unfortunately, we lost Eric on the way out, and it took over 15 minutes to find him. Richard ended up being 17 minutes late, but they were covered by the other kid in the mean time.
During all this Linda was doing fine. I would say she has been running around 70% for the last few days.

Day 132: Thursday, July 1, 2004
Linda did much better on Tuesday, and Wednesday. Eric Carruthers, Nancy's S.O. came into town on Tuesday. Yesterday, our old housemates, Ryan and Megan, came over for dinner. We all had a great time. I was a bit grumpy because of some business things going on, and the fact that my back went out Tuesday afternoon. I guess Linda's stomach wasn't feeling real good after dinner. What she described seemed to me like what mine has been doing for a couple of months. Life: can't live with it, can't live without it.
My business deal finally came to a reasonable point around 11:00, so after about 16:00, I went home and took a nap. I finished "The Life of Pi" on tape on the way home, and over the course of the afternoon and evening I finished "Footfall" in hardbound. Linda, Nancy, and Eric were at the Seattle Art Museum, checking out their Van Gogh exibit. They stopped at the soon to be defunct "Armadillo Barbeque", on the way home, and picked up a ton of ribs for dinner.

Day 130: Tuesday, June 29, 2004
Linda felt pretty crummy all day yesterday. She was still in her robe when I got home, and watching "Dances with Wolves" with the little guys. The kids had a pretty tough day, and I think they were suffering from lack of parental attention.
I couldnt' tell for sure if she was feeling better when I kissed her goodbye this morning, as she was still in bed, but she sounded better.

Day 129: Monday, June 28, 2004
We had a pretty good weekend! We went shopping, with all the kids, to the downtown REI, to pick up most of the stuff Brian needed for his Coming of Age trip. We also hit Value Village, Fred Meyer, and Campbell Nelson Volkswagen, arriving home around 18:00. Sunday, we went to church, and sent Brian off for three weeks.

Day 126: Friday, June 25, 2004
Linda's energy is slowly coming back. Most days are better, but there are always ups and downs. Tuesday, she went to her Solutions meeting in the evening. Last night we watched the new version of Peter Pan, and it was OK. Linda talked to Maggie's current owner, and she would really like for Maggie to come live with us, and so is willing to keep her for the next two months, till Linda is past the first six months. Where did the six months come from? Linda asked Dr. Kraemer when she saw him on Tuesday, and he pushed for at least six months.
Tonight, Nancy is taking Linda and I to see Fahrenheight 9/11, and my sister Linda will be with the guys.
I misunderstood! Nancy took Richard, Brian, and myself to the movie. Linda stayed home to avoid the crowd. I went to got Richard at 19:00, and headed for the theatre for the 19:50 show. Richard got a pretty good spot in line, while I parked the car in the jammed lot. By the time Nancy and Brian arrived with the tickets, the whole line had disappeared into the theatre.
The Movie: Being a pretty reluctant liberal, it appears to me that Michael Moore is spinning the information for all it is worth, but in spite of that, pretty much everything he says line up well with my perceptions and observations of George W. Bush. It portrays a pretty ugly picture. The first half deals mostly with facts, and the second half deals with emotions, and the war.
Did I enjoy the movie? No! I think the movie should be seen, and I am horribly embarrassed by the fact that this man managed to become President of the United States of America.

Day 122: Monday, June 21, 2004
Linda has been doing pretty good for a few days. Saturday, we had a dog interview. Why I am allowing this, I am not sure. The SCCA was very adamant that we could have "No new pets for the first year". We first interviewed Maggie, when Linda was in the hospital, at her request. At that time Maggie was a bit on the chubby side, but she has slimmed down quite a bit since then. We took her on a short walk around the neighborhood, and if she gets Linda out walking, that might be good. Right now, I am still having to deal with "Can I keep her, can I keep her?"
Sunday was pretty active. We all went to Church, except for Richard, whom we picked up after. We then did a drive through Wendy's, and headed off to the Pacific Science Center for the IMAX version of Harry Potter III, but it was sold out when we arrived. We thought of checking out the Science Fiction Hall of Fame, but that was a long way for Nancy to walk, so we went to the information booth at Center House to borrow a wheel chair. When we arrived, we found there was the Seattle International Juggling Festival happening, and we watched those happenings for a while, then went out to the fountain, and the kids all got wet, but we had come prepared for that. At 16:00 we headed for the movie. Afterwards we went to Chan's Place for chinese food on the way home and we were all pretty tired when we got home around 21:15. It was a pretty long day, and Linda came through it pretty well. I was the only real grumpy one, as my stomach was not behaving itself very well.

Day 119: Friday, June 18, 2004
Linda had what appeared to be a quiet, but higher energy day yesterday, while all the kids and I were gone. She seems awake and in reasonably good spirits today.

Day 118: Thursday, June 17, 2004
Yesterday, Linda felt the worst she has since she came home. We had Cole, Robin's friend, and his Mom Lisa, over for dessert, and Linda had already gone to bed. I was getting worried, but she is feeling better today, at least she doesn't hurt all over. Today is a busy one for me, as I am taking all our kids, and two Erics, to Wild Waves for the day. We will get back somewhere around 18:00, in time to get ready for Robin's Campfire meeting tonight at 19:00. Eric Meitzner has already arrived, and I expect that Eric Gronquist will be here soon, and we will push off.

Day 117: Wednesday, June 16, 2004
Things are pretty quiet at the moment. Linda went to visit Dr. Kraemer yesterday, and since I didn't hear anything, I guess no news is good news. We had Steak and Crab for dinner, Ice Cream and chocolate sauce (eat your heart out Hershey's) for desert, then watched "Brother Bear". I think we all liked the movie. It was kind of a late night, but we managed to stumble through it. I had to wake Linda up to take her medicine, when I came to bed at 22:45.

Day 115: Monday, June 14, 2004
Linda went to the airport on Friday, to pick up Teri Hart, who came from Santa Cruz to visit for the weekend. Saturday was mostly a slow day, with dinner out at Azteca, where they try to feed you way too much. Teri took Linda out for a massage Saturday night after dinner. Sunday was church, with the church "Beginning of Summer" picnic. I had to disappear to Kingston to deliver a custom BatMan to Rich "Mad Man" Rudman, and when I got back just before 17:00 Linda was coming back from the airport having dropped Teri off, for her flight home. Linda had better energy Sunday than most days recently, and was up before I left for work.

Day 111: Thursday, June 10, 2004
Things appear to be returning to normal, all except Linda's energy. She crashes early, and usually needs a pretty long nap in the afternoons. I have no idea what happened on Tuesday, as I was at work, or the SEVA meeting until nearly 22:30. Yesterday, was pretty normal from what I could see. Linda slept a LOT, we had dinner, with Richard's new friend Jordan, and then it was bedtime.

Day 108: Monday, June 7, 2004
We had planned to go to the Seattle Childrens Museum on Saturday, but Richard had a fever, so we stayed home. we ended up watching several movies over the course of the day. Linda was doing fine.
Sunday Linda got up just about the crack of Noon. We managed to get out of the house around 16:30 to see Shrek 2. Linda wasn't doing as well as she had, but we went to Lenny's for dinner.
Today, Linda managed to make it through the day, all by herself! Nancy hasn't come back from her short vacation yet, so Linda had to do it by herself, and she did fine. It did help, that there was a catered dinner at the church that we were invited to, to feed us. Another crop of fresh High School graduates is released upon the unsuspecting world. Congratulations: Max Brown!

Day 105: Friday, June 4, 2004
The last week has flown by for me! Richard and I left for Portland Friday night around 19:00, and we would have gotten to the track around 22:00, but we threw the tread on one of the trailer tires, and took an hour out to fix that, so we got to bed around 23:30. The upshot of the weekend was that we didn't go as fast as last year, but we still won. We got all sunburned, and had a good time in general.
I guess the family went to folklife before we left, on Friday, and on Saturday. Sunday, they stayed home and watched six movies, skipping church. Monday, they again went to folklife. Tuesday, Linda saw Dr. Kraemer, and everything seemed ok there. I can hardly remember the week. Yesterday, Linda went to visit Dr. Rogge, the shrink. He thinks maybe her sleepiness and munchiness might be caused by the drugs the SCCA had her on in place of her old psyche meds. He said there was something new they would try. I was getting worried that she might have been heading for depression again. Tonight we watched a movie after dinner.

Big Gap!

Day 97: Thursday, May 27, 2004
Things have been a little slow I guess. Linda seems to get tired in the early afternoon, takes a nap, and really doesn't wake up much. We did manage to stay up to watch "DeathTrap" last night. She has an appointment with Dr. Kraemer this morning, and we will see how it goes.
Don't expect to find any updates to this page over the weekend, as I will be gone to Portland, and away from the net.

Day 95: Tuesday, May 25, 2004
Linda told me she didn't need me for the morning, but she called at 9:00 asking if I could come take her to the 10:00 clinic. Her phone rang as we were on the bridge, wondering where she was. Ooops! Her clinic appointment was at 9:30 with nutrition at 10:00. I dropped her at the door, and parked the car. Since we were late, we talked to Kerry, the nutritionist first. She got a multiple page sheet describing what she should try to eat. She should try to limit high fructose corn syrup (soda, syrup), because it, and cyclosporin both, tend to increase triglycerides. She should take some multi-vitamin without iron, whatever is on sale. If she has to go on prednisone, she will need more calcium and vitamin D. Linda has been having some indigestion in the evenings, and Kerry suggested to go back to a bland diet, and add things back in slowly. This could be that she might have different food tolerances now.
She went over the indigestion thing with both Kim and again with Britta. It could be related to maybe over eating. She goes off the oral magnesium oxide. The gas and cramps ARE oral magnesium symptoms. Cyclosporin levels stay the same. No more steroid cream, but the fk507 ointment stays. She finishes what she has.

She's FREE!

Day 94: Monday, May 24, 2004
Linda wasn't feeling very good today, she hurt in the places affected by her fall at the bowling alley yesterday, and in general all over. She went in for lab work this morning, and they called in the afternoon, to request that she go back on the IV magnesium. The said that could be why she was hurting so much. She was basically stationary on the couch when I got home. I managed to get the IV plugged in at 17:40, so we will have to unplug around midnight somewhere.
I guess we got a weak battery, because the pump gave up at 23:30, and I had to install another battery for it to finish. It got done around 23:50.

Day 93: Sunday, May 23, 2004
We ALL went to church this morning, and there was a wonderful musical service. Everyone was tickeled to see Linda, but in an effort to stay alive, she has instituted a no hugs policy till her immune system is back on-line again. This appeared to be a little hard on some, but we do what we have to do. After lunch, the whole family went bowling at Sunset Bowl in Ballard, where my family went when I was growing up. Linda cleaned everybody's clocks. We all had a great time. On the way back, I was talked into stopping at a chinese restaurant for dinner.

Day 92: Saturday, May 22, 2004
Linda, Nancy, Robin, Tristan and I went to Bothell Highs production of "Once on this Island" Saturday afternoon, and we all had a great time. When we got home around 17:30, Richard had disappeared to a baby sitting job, and Brian was hanging out. Richard got home around 23:30.

Day 91: Friday, May 21, 2004
Today is the day for the long awaited Fred Hutch/SCCA "Discharge Conference". Linda will come to Strobe just after Squiggle, and we will go over to the SCCA Clinic for the conference. After Tuesday, Linda transfers back to Dr. Kraemer for her care.
Dr. Riddell. He wants to review where we are. Chronic GVHD. Engraftment happened pretty quickly. Total white cells: 4.91, neutrofil 3.63. Her immune system is still not fully there, and may not be there for a year. Scott has a abnormality. We have a slightly have lower chance of relapse, because she has had some GVHD. 20-30%. Acute and chronic GVHD has best chances, which she has had. We will stop the beclamethesone again, after the two week course is done. Liver function is normal, so no GVHD there. They would probably recommend prednisone, but it is contra-indicated with her psyche history. Cyclosporin treatment for a year. She comes back in September for a long term follow up with Heather.
Immunologic reconstitution. Takes at least a year to get back to normal. Immunoglobulin transfusion if her count goes below 400, it is now at ~550. No vaccinations for the first year. No live virus vaccine without permission from long term follow up office. She doesn't need voriconizole because the lung spot changes, which it hasn't. Bactrim goes to 1 pill per day. If counts fall, call LTFUO. Stay on acyclovir for a full year, to prevent shingles/chicken pox. It can be serious when on immunosuppressants. Liver is ok, but kidneys are still in danger from cyclosporin. This was in response to Linda's question about the psyche. Jaymes is OK, but Linda can't change the litter box, which he doesn't use anyway. We can have plants, but Linda can't take care of them. Repotting, and care should be done when Linda isn't around. NO HOT TUBS! NO SUN! Cover UP! Wear sunscreen under long clothes. No fluid for the weekend, but some oral magnesium. Linda's Questions:
1. What do we need gloves for? Nothing when the line comes out.
2. If PUVA works with UV, why does she need to stay out of the sun again? Psoralin sensitizes the lymphosytes. The highest secondary cancer likelyhood, is skin cancer.
3. What are the statistics from here? The chance of relapse is significant, in her case ~20%! Just check blood counts regularly.
4. What is most likely to get us? Relapse, Infection, and GVHD. Check on fevers NOW! Let Dr. Kraemer decide.
5. What does Rogge need?
6. Swimming? Stay away from public pools!
7. Line? Out Tuesday! They will send him the same report that Kraemer gets.
8. Folk Life? Yes, be careful! Don't touch things!

Day 90: Thursday, May 20, 2004
Linda and I were up early paying bills, but she was too tired to go to Tristan's Kindergarten class "Spring Whing Ding". While attending this with everybody except Linda, we managed to miss Robin's CampFire meeting. So many things to do, so little time.

Day 89: Wednesday, May 19, 2004
This morning started, for Linda and I, with an 8:15 meeting at Woodmor school to discuss Brian. When we got home, Linda jumped into the old blue van to get to a 9:00 meeting with Richard's homeschool network advisor Patty, at Leota Jr. High. On the way home, I stopped at Dave Cloud's house to install Ad-aware so that his computer would have time to work for him, as opposed to all the spybots it had collected. While I was there, Linda called and told me we were having a picnic at Cottage Lake Park for dinner. I met them there, about half way home and we had a nice dinner. We played a bit of Frisbee, and headed home. When we got there, I found the milk bottles, still sitting at the top of the stairs, that I was supposed to replace with full ones. It turned out that the white van was full of stuff for the church rummage sale, so I took that stuff to church, and sorted it into the appropriate places. One of the church members was supposed to be there, and I was supposed to give her a container for Friday's dinner, but she wasn't, so I dropped it off at her house. Then it was off to the dairy for the milk. They have been hacking the intersection where the dairy is for several months now, and with evening construction it took about fifteen minutes to turn left to get to the dairy. I finally got home just after 21:00.

Day 88: Tuesday, May 18, 2004
This morning, Linda and I have a LTFUGVHD conference. For those not in the know, that is "Long Term Follow Up Graft Versus Host Disease", and a bit of a mouthful. Even Frank, the sixth floor receptionist, had to struggle to get around it. Heather Hooper is the P.A. for the conference. Linda's eyes have felt a bit dry in the last few weeks, and her mouth has been dry for a few days. Heather checked out Linda's mouth and eyes very carefully. Nothing was very exciting, they are just checking and making notes for when she comes back in another six months or so, so they can compare. We checked her flexibility. She has mild symptoms in her mouth and her skin. Sensitivity to spicy foods is GVHD. Linda asked about contact lenses, and they suggest that she doesn't use them. The bumps on her skin is chronic GVHD. There have been times when her skin would change in less than ten minutes. They will have to treat for two to four years. They check about every nine months. The facts that she has good platelet counts, and is not on steroids, are good. They discussed long term cyclosporin, and the possibility of prednisone. Linda doesn't seem to be a good candidate for one of their studies involving prednisone, and Linda would like to stay away from that drug if possible. They would like to increase the bactrim drug to once a day. She will have to take drugs to prevent shingles/chicken pox for a whole year. She will have another bone marrow biopsy after a year. Last weeks biopsy was fine. She basically has Scott's immune system now. 250 is the normal level for cyclosporin. We will get a formal plan from Dr. Riddell on Friday, not Thursday, at the discharge conference. A place that GVHD likes to attack is the tear ducts. This is why her eyes are dry. There are sun glasses called Panoptics that are cheaper than moisture chamber glasses for the dry eye problem. Sunlight can initiate GVHD, so she should stay out of the sun. Afterwards, we went back to Strobe, and had lunch next door at the Brown Bag Cafe. We split an Omelette, at it was still too much.

Day 87: Monday, May 17, 2004

Linda comes home today!

Day 86: Sunday, May 16, 2004
Rick and Jan left this morning about 9:00 to start their drive back to San Jose. The Brian, Robin, and Tristan just kind of hung out. I did a couple hours of work on one of my consulting jobs. The guys were mostly playing together just fine. Richard was gone to Mathew Millar's. Linda and Nancy got home about 17:00, and the retreat had gone fine. At 17:45, Linda, Richard, and I left for the Junior Youth meeting, at the church , where we had a "Fishbowl", and learned what some of our youth think, and they learned a bit about what parents think. One of the girls confessed she lied about a lot of stuff, and I was glad to hear Richard doesn't. I am glad we provide an environment where he doesn't feel he needs to lie. I sent Nancy off to be with Linda at the apartment for our last night there, so maybe she could help Linda work on cleaning the place in preparation for Linda's departure.

Day 84: Friday, May 14, 2004
Rick Wedge has been helping me get some BatMans ready for delivery, which we managed to do by this morning, but the company that wants them can't get them till Monday.

Thanks Rick!

Linda spent last night in her own bed, but she leaves for the church Women's Retreat this afternoon. This morning, I spent a while moving boxes of medical and other supplies from the old blue van to the Passat for the trip. She and Nancy will return Sunday afternoon. Linda has been doing fine since Tuesday, and moves out of the apartment Monday, and has her last SCCA Clinic appointment a week from next Tuesday, or something like that. I think her SCCA "Discharge Conference" is on Thursday. I guess this means they trust Dr. Kraemer to take care of her again.

Day 82: Wednesday, May 12, 2004
Linda is having another good day! We are at the SCCA for the "Long Term Follow-UP: Discharge Orientation". They aren't starting early like last time I came to a class. Jane Jocam will be the instructor when she arrives. The main thing I remember, is that even if she does get "chronic GVHD" they usually have it all cleared up, at worst, in five years.
We went from there to a meeting with Brian and his teacher at school. He has been having a bit of touble getting used to the school thing, but he has been improving very fast.

Day 81: Tuesday, May 11, 2004
Tuesday went pretty well for Linda, she said she had a "good day". I didn't get to talk to her much, but Nancy roported she was looking great, and eating well. Apparently firing up the beclamethasone again helped. After the Seattle Electric Vehicle Association meeting, Dave Cloud and I were out till midnight collecting a broken Sparrow for him to fix.

Day 80: Monday, May 10, 2004
I called Nancy to see how things were going at lunch time. It appears that Linda threw up at least some of her dinner last night, and wasn't feeling very good this morning, when she headed off to the clinic. I guess she had eaten a little bit of breakfast. Nancy and I discussed my going to be with her for the bone marrow biopsy this afternoon, but with my coldishness, we decided it would be better for her to go. I guess I will see her again some day.
She was feeling better when I talked to her later in the day, but I am still in purgatory with my cold. The monthly Doc rotation happened this week, and the new one said: "Let me get this straight, you were nauseus, so you started beclamethasone, and a few days later you felt better. Then you stopped taking the beclamethasone, and a few days later, the nausea was back. I think we can figure this out!"

Day 78: Sunday, May 9, 2004 Mothers Day!
Nancy's number 3 son Rick, and his wife Jan had arrived at about 2:30 in the morning. Nancy had wondered why we had asked her to sleep in the guest room last night. I managed to squeak a couple of Mothers Day cards out, before I went to church. Richard and I did the church thing because we both had to work, while everyone else stayed home. I didn't have time to do a big breakfast thing, but I did cook swiss steak, mashed potatoes and asparagus for dinner, which seemed to go over pretty well. Linda was feeling pretty good all the time I was there, but after dinner, I sent Nancy to the apartment with her for the evening, as I am getting a cold.

Day 78: Saturday, May 8, 2004
Linda wasn't feeling very good, as Steve and I packed up to go to the Lacy Electrathon race. We ended up getting a bit of a late start, but we got there while the high school race was in progress. Dave had brought a car that had been built by a high school, and stuck a student in it for the race, but it hadn't been built to stand up to the Lacy course, and the rear suspension failed. Steve Nash offered to have me drive my regular car, but I had safely left all my gear at home, since he had offered to drive. The event turned out to be our usual disaster at this race. Steve had to come in to get the canopy taken off so he could see because of the rain. Old BatMan number 1 failed because each time he drove around one corner, everything in the car was drenched with about a gallon of water, as he went through a puddle. Oh well, such is racing.
Steve Grant has been getting into gourmet cooking of late, and decided to cook us dinner. He grilled some Ahi, along with prochutto? wrapped asparagus. The Ahi, with the blueberry mango salsa was wonderful! Thank you Steve! Linda was feeling better by dinner time, and enjoyed it with the rest of us.

Day 77: Friday, May 7, 2004
Steve picked Linda up, and brought her over to Strobe about lunchtime, where I conned them into playing Squiggle with us, for the Friday Squiggle game. Later, we went home separately, and eventually Linda, Nancy, Steve and I wandered to Tony Roma's for dinner, while my sister Linda watched the guys. We all had a great time.

Day 76: Thursday, May 6, 2004
Linda's day went pretty good, if you don't count all the waiting at the clinic. One appointment was sick, and another had to be delayed. Next week they start all the pre-discharge testing with a bone marrow biopsy, and pulmonary function tests. All this to see how much damage they did in the transplant process so far. They also try to estimate the likelihood of continued dificulties with GVHD, in order to set the taper schedule of the immunosuppressants. This is all for the next weeks, as we approach day 100, Independance Day! My evening was pretty busy, with fixing the first BatMan for Dave as he gets ready for Saturdays race, taking Robin to Campfire, taking two BatMan units over to Dave's, and then driving to Seattle to spend the night with Linda.

Day 75: Wednesday, May 5, 2004
Cinco de Mayo! I guess we aren't good Mexicans, because we didn't do a lot of celebration. We did have a vaguely Mexican dish for dinner. Linda didn't get up very early, I think I called at 11:30, when I was starting my lunch, and she was still in bed. Nancy had said that she was feeling a little nauseus, but she dildn't mention that to me. She was sounding perkier when I talked to her as I was leaving Strobe. Nancy and Linda left just before 21:00, and I was in bed with the light out by 22:00.

Day 74: Tuesday, May 4, 2004
Sleeping would be a very strong word to use to describe what I did last night. I stayed on the couch, away from Linda's IV pump, which grinds happily every 5 seconds or so, until 3:20, when it was done. I did sleep for a while, till the traffic started up at around 5:00, then it was on and off till 6:30, when I got up. I got Linda up, and made her eat a little breakfast, and we got all her meds down, started, and otherwise handled, so I headed off to work.
As I was getting my lunch ready, I called to see how things were going, and she didn't answer the phone! Off I went, leaving my lunch, and coffe, and headed for the apartment. She wasn't there! I called her cell phone, and she was at the clinic, so I headed over there. I found her on the 5th floor, in room 7, where we hung out till 15:15, whereapon we headed off to radiology, where they were going to do a follow-up ct scan of her chest, and while she was there, they would do a scan of her head. They hadn't found anything specific, as to why she was feeling badly, but sent us away after radiology. They did decide to lower one of the drugs, which sometimes tends to gork some people out. From there, we went back to the apartment, to collect drugs and other paraphenalia, and we headed for home, where she will stay tonight. We had to stop at Strobe, to pick up my computer, and see if there was anything I could do for Cookie, who was looking for an anomoly in the software for the StrobeMux USB, which is one of my projects. Unfortunately, the customer is in Melbourne, so we can't just hop over there. I might be more useful tomorrow, when I have had some sleep.

Day 73: Monday, May 3, 2004
How did it get to be Monday already? A recap of recent events: Saturday, R, B, R and I got up fairly early for a Saturday, and went over to the Apartment to pick up Scott and Tristan. We then went to the UW School of Engineering Open House. In Mechanical Engineering we saw some fantastic "Rube Goldberg" contraptions for dispensing tortilla chips, toilet paper, and preparing a bowl of cereal. We saw some interesting stuff in civil engineering, including a "roundabout" simulator. In Computer Science, we saw soccer playing Sony Aibo robots, and the last thing of the day, was laser tag. We spent a quiet evening at home, which wasn't what Linda had planned, but that is the way it worked out.
Sunday, Richard, Brian, and I did the church thing, then Richard went to the zoo with the junior youth group, while I repaired a new BatMan which wasn't quite working right yet. Linda came over, after dropping Scott off at the airport for his trip home, and took a nap in her own bed for a change.

Thank you Scott! We will miss you!

I have no words to express the gratitude for the selfless way Scott put his own life on hold for two and a half months to come up and take care of Linda 24 hours a day. There is no possible way to repay that kindness.

When she woke up, she went to get Richard from his excursion. We had a nice dinner, and Linda and I went over to the apartment for the night. I had a little documentation to write, then we headed for bed, just after 23:00. I did lay down, but I can't really say I slept.
I got up at 6:30, and left about 7:10 to take some tardy parts over to the electronic assembly house in Ballard. I got back around 7:40, and made sure Linda was up before I headed off to work.
Since she doesn't have any appointments tomorrow, she is toying with the idea of spending the night at home! I could maybe spend the night with her and sleep too!
By about 18:00 she had decided it would be better to stay at the apartment for the night. About 20:00 she called to say that she had a horrible headache, felt like she needed to throw up, and would I come over? When I arrived, I started up another liter of saline, and took her temp, which was fine. She is currently lying on the couch, and I am not sure if she is awake or not. I will get her into bed around 23:00 if she doesn't go there on her own.

Day 70: Friday, April 30, 2004
Linda is having a slow day today, but is feeling pretty good. I guess Johndude might be coming over tonight, to watch one of the other movies I didn't watch yesterday, but I think some sleep might be in order for me. I was woken by Robin twice in the night, as he was having some difficulties with a bladder infection, or something. This happened Wednesday night once, so I am a bit short on sleep. I also don't like to miss bed time too often, certainly not two nights in a row, if I can help it.
Linda and Scott came over to celebrate Ryan's birthday, and Megan and Ryan's farewell dinner. While driving back from fetching Richard from archery, we got into a discussion about how many days it had been since tranplant. As a result, I went back and renumbered the days from the 19th of March, where I had miss counted. Yes, Fridays should all be divisible by 7. Tristan went to spend the night with Linda, and Megan and Ryan packed the rest of their stuff in their borrowed pickup, and they all left. Scott is thinking of going home in the next few days, so we may be all on our own, with the exception of Nancy, soon.

Thank you for all your help Ryan and Megan!

Day 69: Thursday, April 29, 2004
I usually think of calling Linda around lunch time, and she is usually in a meeting at the SCCA clinic. This time she said she was having another good day. She had a sandwich for breakfast, after her fasting blood test of the morning, and everything seems fine. I may have more when she calls me back.
We had some excitement at work: one of the guys was going out for lunch, and noticed a swarm of honey bees clinging to the bottom of one of the decks on the building. We ended up calling a bee keeping supply store in Snohomish for some leads to local bee keepers that might want a free family of bees. A guy named Richard came and got out his bee suit, and proceeded to collect them. He even gave us a bottle of honey for our toast. I am not sure he got the queen though, as they are still hanging at the same spot. It was a smaller pile, and he had left the bee box underneath in hopes of luring them into it.
I got home at 18:33, was eating dinner at 18:47, and left to go watch a movie with Linda, Scott, and Johndude. It is now 23:45, and I'm going to turn off the computer, and try to sleep.

Day 68: Wednesday, April 28, 2004
I got home a little early, around 16:30, and what do I see, but the blue van parked in front! Linda and Scott were over for a visit! Scott and Robin were trying to fix the lawn mower, and Linda was talking to someone I didn't recognize right away. I had some work to do, so disappeared into the office to do it. Linda and Scott stayed for dinner, and left just before bedtime. Linda was feeling much better than last week this time. It was sure good to have her around feeling more like herself.

Day 67: Tuesday, April 27, 2004
I talked to Linda this morning, and she is doing better, and says she has turned the corner. She sounded more like herself. She apparently started feeling improvement yesterday. She didn't have any appointments today, other than a Solutions Meeting tonight.
When Sheer and I arrived to rescue Scott for the evening, Linda seemed to be doing pretty good. She didn't get out of her chair while I was there, but her eyes were bright, and she looked like she had a real tan, as opposed to the funny color she had Saturday. Besides being a programmer, Sheer is an electronic musician, and has several pieces by the company Scott founded, E-MU Systems. We had a great time, and didn't return to the apartment till 22:30, and Linda was already asleep. After dropping Sheer off at his place, I got home at 23:20.

Day 66: Monday, April 26, 2004
Scott heard it right, said it right, I heard it right, my brain just didn't get around it. One of our friends in the medical community writes:
Adrenal insufficiency is tested for by using the Cortisol Stress Test, where you first check the baseline cortisol level, then give the patient a dose of Cosyntropin IV, then test the Cortisol level at 30 minute and 60 minute intervals.
Adrenal insufficiency shows up as lightheadedness, nausea, poor appetite, fatigue, joint pain, low blood pressure, and a darkening of the skin, like a sickly tan look.
I stand corrected.
I think Linda fits everything except maybe the low blood pressure. Maybe today we will hear the results of the cortisol test.
13:30 No results yet, but she sounds a bit better. The doc's said it takes a couple of days for the results to show up. She was even making noises about making some lunch, and watching it for a while. Her body was apparently making some vague hints that food might be in order.

Day 65: Sunday, April 25, 2004
Yesterday was just another cruddy day in paradise! I had some work to do in the morning, but was done about 14:30, so Tristan, Robin, an I wandered over to the SCCA to see how Mom was doing. She was finishing a liter of saline as we came in. As soon as that was done, she wandered into the bathroom, and came out saying she still felt light headed when she was anything but horizontal, and she was still nauseous. They asked a bunch of questions, but sent us back over to PGH, where we watched some cartoons, and Linda said she maybe wanted a hamburger. Huh? Food? Right ON! I went off to get some burgers at Dick's. Linda actually made it through about three fourths of her burger. That is probably the largest meal she has eaten since before last Friday. After that we played a couple of games of squiggle, and the kids and I went home for diner. The early news from the doc's was that they didn't know why she felt so bad. Later in the day one of them came up with a possibility, so they are doing a test today to check this out. What I heard from Scott was "adrenal insufficiency", but maybe it was "renal insufficiency". That might make more sense given all the symptoms that I have seen, not that I know anything. We were warned that this whole process is a bit tough on the kidneys, because they run so much stuff through her system.
At noon, Scott told me she lost her breakfast, along with the morning medications. I hope they figure out what is going on soon. She doesn't look good, and feels worse. Scott describes her color as gray, but I don't know what to call it, it just isn't right. I suppose some of it could be from the tanning treatments, as she is much darker than usual, but she isn't yellow like some of the folks over at the U, when she was still in the hospital. Her color is just dark and strange. I suppose if she ends up back in the hospital for a "tune up", at least they warned us that most transplant patients do have to come back at least once.
I was just starting some work in the office, when I heard the blue van. It was Scott and Linda. They had come over for the afternoon. She was bummed that she couldn't go to the Church Building Dedication with us. She, Scott, and the small kids stayed home, and Richard, Brian, Nancy and I went. I think all who went enjoyed themselves. When we came back, we all piled into vehicles, and went to Las Margaritas for dinner. Linda's color was better than yesterday, and she pointed out that she was vertical, unlike yesterday. I think she had two chips, and was unable to touch her dinner.

Day 63: Friday, April 23, 2004
Scott called at 23:00 last night to ask if I had any secrets about how to wake Linda up to take her evening meds. He wasn't quite panicked, but was concerned. She had woken up once to go to the bathroom, but didn't manage to get her clothes off before she fell asleep on her bed. Scott called at 9:30 to tell me how it had gone, which was he got her to take the cyclosporin, which is the main defense against GVHD, but the clinic had said it was OK to skip the others if they had to. I guess she did wake up in the middle of the night a couple of times, but was still sleeping as we talked. I guess it is a good thing that they moved her appointments for today to the afternoon. Maybe she will be awake by then.
14:00 It has now been 24 hours since Linda was anything like awake. Scott has managed to get her medications down her, and she has kept them down. I guess that is good, but I sure would like her to wake up soon.

Day 62: Thursday, April 22, 2004
I looked for a street parking spot at around 9:50, but was unable to find anthing, so I parked in the garage. I found Linda and Scott in the 6th floor waiting area, just about on time. So far, Scott has cancelled his rides to the airport, but hasn't cancelled the flight yet. Very uncharacteristicly, the SCCA was running a bit late, and we didn't get into the exam room till around 10:30. We are going over the history of her nausea and skin rash. The reason for this is that as far as GVHD goes, the skin on the inside of her stomach is the same skin as on the outside, so she can get GVHD there too. The reason I am here today, is because they might be using some kind of scope to check out her stomach and such. The doc is discussing the possibility of scheduling a EGD at 12:30. Clear fluids and medications only till then. They will peek around, and take a biopsy, and Scott and I get to watch! Ooops, there went this mornings drugs and such into the bucket. My girl is not feeling good at all. They might treat with prednizone, which usually helps within a day or maybe two.
At 12:30 We went in and Daniel started getting everything all set up for the 13:30 procedure. Linda was scared, so I held her hand a lot. The Doc's were pretty much on time, but they had a bit of trouble getting Linda to sleep. They ended up giving her 10 units (mg?) of versedd, a bunch of fentanyl, and 25mg of benadryl. The procedure went fine, they took 4 samples, and several pictures. The Doc came out and showed me the pictures, and explained that the normally perlly white lining of the stomach was a bit red in spots, which is regularly true with GVHD. She showed where the pictures and samples were taken. Linda didn't get any of this at the time, because she was sleeping. Around 16:30 she woke up long enough to get into a wheelchair, so I could take her over to PGH, where she promptly fell asleep again. Linda regularly takes 6.25mg of benadryl to got to sleep, and this was 4 times that! She might wake up tomorrow.

Day 61: Wednesday, April 21, 2004
Yesterday was a slow one for Linda. I don't believe she made it out of the apartment all day. She did eat some though. I didn't get over to see her, partly because just as I was finishing dinner, I remembered that I was now 20 minutes late for a meeting. I got back from the meeting at 21:30.
Today, she ate her breakfast, and took all her medications, so her stomach is doing better, but she still feels crummy. She says she is kind of going through the motions because she has to, not because she feels good enough to. She was headed out to her drug enhanced sun tanning session at SCCA when I talked to her.
When I talked to her in the evening, she had felt really crummy all day. She had lost her cookies after they got back from the SCCA at around noon, and discovered all the pills she had taken in the morning. They are having her try to take a couple of CC's of what seems like straight corn oil, a couple times a day. Linda had to try to swallow it four times to get it down the first time.
Nancy just got back from a visit, saying that Linda had kept down a glass of jello. I'm not going to bet the farm that she is better though.

Day 59: Monday, April 19, 2004
Today was a busy one, but not for Strobe. I had a breakfast meeting in Seattle at 9:00, then I had three stops to make on the way back. I bailed at 15:00, to go see Mike Ubell, and Paula Hawthorn who somehow managed to get lost between their relatives house in Portland, and the airport, and ended up at the apartment. Well, alright, they didn't get lost, they figured as long as they were this close they would fly back from Seattle instead of Portland, and come up for a short visit. Mike had been worried last week, because of the gap in my reports. I apologize, as last week was rather a zoo, what with taxes and all. We had a nice visit, and they headed out for the airport at 17:30, I headed home half an hour later.
Linda still isn't feeling very good yet, but at least they decided she no longer needs to be in respiratory isolation anymore. That means the Doc's don't need to mask and gown around her anymore. In an effort to describe her level of nausea, she commented that brushing the outside of her front teeth was pushing her gag reflex this morning. We discussed going out to eat, but she was afraid that she might not get along with the smells in a restaurant, so we just hung out. I, my very own self, saw her eat double digits of calories while I was there. She had 3 pretzel nuggets, and a girl scout cookie. I think they were trying atavan for the nausea again, and she was feeling very spacey, like she was stoned.

Day 58: Sunday, April 18, 2004
I talked to Scott at about 8:30, but he was still sleeping. I guess Nancy had talked to him sometime later. The kids had wandered off to various places, Richard to Matthew Millars, and the others went to a movie with Auntie Linda. I finished some work, and tried to call them, but was not able to find them, so about 15:30 I headed off to find my wife. I found them at the SCCA, and she had just finished another liter of saline. She is really tired of not feeling good. She hasn't felt good since last Sunday, and is getting impatient. She feels that even though this is sort of expected that she will have these ups and downs, she lives in the 90th percentile and was expecting to avoid this kind of stuff. We got her to drink a little, and she is crunching on some sun chips as I type this. Maybe things are improving.

Day 57: Saturday, April 17, 2004
Linda wasn't feeling very good today, and we had a pretty major house cleaning going on, and I didn't expect to see her. After getting pretty much straightened away, Ryan and I went to the hardware store for some stuff, and shortly after we got back, in she walked. She threw up a few minutes later, and spent the rest of the day on the living room floor, or the couch. She had brought with her Gene and Marilyn. Scott had been helping most of the morning, and had set up to do a computer recycling run, when his back went out, so I took the van over to my old stomping grounds in Seattle to get rid of it. When I got back, Gene and Marilyn had taken Tristan to the park, Megan and Ryan had taken Robin to Archie McPhee's for his birthday, and Nancy and Brian had gone on a milk run. I decided that maybe I could get a couple of BatMans a little farther along, but discovered I needed screws and spacers, so off I went to the hardware store again. Most everyone was back when I got back, except Ryan had left for work. I got a few more blankets for Linda, as she was cold. We all had chineese take out, except for Linda, whose stomach was not accepting deliveries. She still didn't feel like she could do much about eating or drinking. We eventually talked to the SCCA folks, and got some suggestions, which didn't pan out, so Linda called back, and they sent her and Scott over to UWMC to get her some fluids. I last talked to Scott about 21:30, who was leaving the hospital to go to the apartment to get her evening medications. He said they expected to let her out when she had a liter of fluid. If she wasn't stabilized after 1, she would get another, but she would have to stay.

Day 56: Friday, April 16, 2004
I woke up in the apartment this morning, having slept not too badly for not being in my bed. Linda and Scott had wandered into the house just before dinner last night, and I guess I followed them home like a lost puppy. Whatever weirdness they are having Linda do is helping her skin a lot. I helped put on a couple of different creams on her back, and it is almost back to normal.
Linda felt pretty crummy most of the day. She threw up into her bucket in the van on the way back from the clinic today. Later in the afternoon, she was feeling a bit better, and called me to go to dinner with Scott, Gene, one of her other brothers, and Marilyn, Gene's wife. It was an early dinner at Ivar's Salmon House, and I made it back to lend a bit of help cleaning up after dinner. Eventually the kids, Nancy, and I all got into a dart game till bed time.

Day 55: Thursday, April 15, 2004
It has been a quiet week in Lake Woebegone... Wait a minute, that is another tale. This week has been a bit crazy. From my point of view, it has been TAX WEEK, with little bits off for Robin's birthday. He turned 9 yesterday. Linda wasn't feeling very good most of the day, and wasn't sure if she could come over and see Robin on his birthday. I had been doing taxes since about 13:00, when she called around 17:00 to say she and Scott would make it after all. At that time, it was just me and the cats and chickens. I crawled out of the tax mines long enough to get Robin a preent before everyone got home. We had a nice casserole for dinner, which nobody expected to like, but it was all gone at the end. Robin got a few presents, including an R/C airplane, which I won't let him fly, till we go to the flying field, or somewhere else big enough. He has aleady lost one electric airplane to the trees in our yard. We had a short meeting of all the adults in the house, discussing some of the clean-up left to be done, in preparation for Linda coming home.
Super Scott will be going home next Thursday, so I will be spending more time over in the apartment. Linda is expecting to come at the end of the month.
Today I went over to the apartment to have Linda sign the tax return, and she was feeling a bit nappy, and was on the couch huddled under a blanket. I hung out for about 45 minutes, then had to go back to work. On the way, I filed the taxes at the post office. They may not be paid, but at least they are filed. Tuesday was Seattle Electric Vehicle Association meeting day. Linda had a Solutions Group meeting, so I dragged Scott with me to that. I can't remember Monday at all.

Day 51: Sunday, April 11, 2004
I woke to the sounds of Tristan and Robin getting up at around 6:15, then their discussion about the Easter Bunny not coming. Nobody knew what had happened, but the eggs they had dyed on Friday were still in the refrigerator, and there were no baskets of goodies. I had sound duty at church, so Richard and I left just before 9:00 to get to church, and get the sound system set up. There were a few other preparations to make also. The rest of the family showed up about 9:50, and at 10:00 Linda and Scott came in to sit in the chairs I had reserved for them in the front corner by the door! She left just before the postlude by Janet Putnams family of 9 or 10 year old daughter, and Dad on violins, with Mom on piano playing a rocking Bach concerto for 2 violins, which was wonderful. When we got home, we discovered that the Easter Bunny hadn't forsaken us after all, he was just running late. He left us a nice note signed "Mr. E. Bunny". Nancy provided a wonderful roast beef dinner at around 1:00, and we hung out for most of the afternoon. Jaymes the cat managed to catch and bring in the house the Easter Bunny! Twice! There have been a couple of wild rabbits living in the neighborhood, and one of their teenagers apparently wasn't paying enough attention. We took the little bunny away from Jaymes, and let it go twice during the afternoon. Around 17:30 Linda dragged me to a Johndude barbeque, where we had a nice time, and I went home to make chocolate sauce for Eric, because he had purchased the ingredients special, and he was leaving in the morning. When I got back Jaymes had the bunny in the front yard again, so I grabbed Jaymes and took him in the house, and tried to block the cat door, but the official block has gone on vacation since the major cleaning, and he got out and brought the bunny back in again. This time I dropped the bunny in the middle of the island in the back yard, and Jaymes hadn't brought it back in by the time I went to bed.

Bruce's notes from the first 51 days post transplant...