The Other Stuff!

Friday, February 13, 2004
We started talking to Christy the social worker, who was being replaced by John Eric last week. She had questions regarding how we were getting along with the SCCA experience. Linda is ready to get the show on the road. They talked about how the kids are getting along with all the stress, and change. They do have a person who's job is to explain to kids what is happening, and help them through this if we need it.
The 15:00 appointment was with Christi, not the same one, for the nasal wash thing, wherein they do a regular throat swab, then they squirt some saline up Linda's nose, and catch some as it comes back out.
Chemo & Radiation Teaching: Shima. Sometimes the skin turns red, but isn't usually painfull, and most people don't feel the radiation at all. We went over all the drugs for the next few days, and there are a bunch. There are a bunch for everyday, and some are as needed for countering all the side effects of the radiation. We then moved two doors down for the dressing change part of the class. I was mainly watching, as Scott learned the routine. I did try to note the differences from what they told us at Evergreen. The swab things they use are lots easier to do than what we did before. We learned about 5cc's of this 2 cups of flour, 3cc's of sugar. Maybe I got confused there, oh well, I guess it isn't important.

Thursday, February 12, 2004
7:17AM Where did all the traffic go? We were expecting a heavy commute, and it was pretty clear all the way, so we are half an hour early, for being early! Linda gets to meet the famous Dr. Hickman today, for her new hickman line. We are here in the Lab waiting area, waiting for them to get ready for all the samples she is supposed to give them this morning, then we will go to the second floor for her 8:00 appointment with Dr. Hickman. We got up to the floor around 7:37, and found that Daniel had been waiting for us for some time, thinking we were supposed to arrive at 7:00. Linda has not gone in, and I am here watching the shadow of Capitol hill creep down Queen Ann hill, as the sun rises on a beutiful day. All the mountains were dimly out, as we crossed a mirror smooth Lake Washington, on the way here. My brain will go off to work for a while here in the lobby, till Linda comes out, in about an hour.
At about 8:20, Dan came out to get me, because the doctor wasn't in yet. We read about Non-Violent Comunication while waiting. He finally fought his way through traffic, and made it in just before 9:00, and introduced himself "Hi, I'm Bob Hickman". He commented that it was written in Linda's chart that she has a pleasant personality. He asked if we would like to hear Hickmans Law. Hickmans Law: Those who take the best care of their line, have the most invested! Linda asked whether a person with a line could ever go swimming, and he said "Yes, but they tend to discourage it." He was really not fond of hot tubs. After explaining what he was going to do, he asked if Linda was warm enough, because he had had an experience of being a patient, and he told us the story, of freezing, and being unable to get the attention of his caregivers, because they had installed a trache tube, and he couldn't talk. He ended up grabbing an arm to get their attention. At 9:10, they took her into the room, saying they would come and get me in half an hour to an hour and a half. Another guy, not Dan, came to get me around 9:45, as they were all done. We went to where Linda had been, and there she was. I sat down, and Dan came in, looked at me, and said "How did you get here so quick?" Dan moved her down to the recoverey area, and shortly they took her away again for a chest X-Ray to see how they did. After that, Dr. Hickman came by, and asked if I would like to see the X-ray? We started walking after I say certainly, and I commented that I would have enjoyed watching, and he said that might have been worked out if I had mentioned it, even though the administration wouldn't have liked it much, because of some medical and legal bits. Anyway, he showed me what the modern GE X-ray machine can do, and described where and how the line gets to where it goes. We discussed the facts about where it ends, and as I was sure, Linda had been slightly mis-informed with her first line. The line stops before the right atrium, so as to leave the valve alone. Dr. Hickman aparrently quit counting how many of these lines he had installed after 6000.
After Linda felt ready, we went upstairs to check on the radiation schedule, then we walked across the street to the Hutch, so Linda could have breakfast. We got home just at noon, then I left with Nancy and Richard to get Tristan from Kindergarten, drop Richard off at school, and Nancy dropped me at Strobe.

Wednesday, February 11, 2004
I don't remember what was going yesterday morning, but Nancy went with Linda. I didn't get home till about 22:00, and by the time she was done with her movie, I was asleep. I think the only appointment today is the "data review". I think this will be where they give us the statistics one last time before we make the final decision to transplant. As far as I know, all systems are go, but I will give you more data from the scene of the crime, later today.
Ok, we start with her giving a sample of blood for them to check before they install the Hickman line tomorrow. She got to Strobe a little later than she thought, and the traffic was pretty heavy on 520, across the bridge, so we are running a little later than we thought, but we still have time to make it to the 15:30 meeting at the moment.
Dr. Doney: Blood and bone marrow look all fine. Liver and renal is "smack dab normal". Heart EKG was totally normal, Pulmonary functions were norrmal. No nasty viruses. Linda comments that it seems odd that she will change chromosome types in her blood after the transplant. She will be living with male blood, in a female body. She will be participating in a study on how much of the "CY" toxin they will give her on Tuesday and Wednesday. IIIIIIIIII, all those "I"s are counting all the other studies she will be participating in.

Tuesday, February 10, 2004
Yesterday, Linda met with the dermatologist, now that her rash is almost entirely gone. It stopped getting worse after she and the kids went swimming last week. Between the two of them, they have decided it is probably a tape allergy, which Linda probably made worse by using hot water to alleviate the itching. Last night, Linda and I went out for dinner, and a movie. We saw Mystic River, which was pretty good. Sean Penn does a great job. I don't recall seeing much of Kevin Bacon since Footloose. Linda had kind of a rough night, not getting to sleep till around 1:00, waking up at 2:30, etc, etc. I think I got to sleep around midnight, when she turned out the light, and woke up several time briefly, then at my usual 5:00, and got back to sleep around 6:30, in time to get up at 7:00. Sleep is overrated, and if most of the world does it, it probably isn't good for me.
Today, Linda see's the Shrink, and someone else, whom I have forgotten at the moment.
The other folks are the Infectious Disease department, who is looking into this thing they found in her lung. They appear to be having a great time calling all around the country, trying to find bits of information, and to Evergreen Hospital, to find what drugs she was on for the last chemo round. I thought they had all that in her chard, but I guess they don't.
I will be splitting this tome again on Friday, so we will have a new shorter version to chronicle the actual transplant process.

Sunday, February 8, 2004
How is it going today? Let's start with Friday. Linda was supposed to have just one appointment at UWMC (University of Washington Medical Center) with the cardiology department, which didn't understand why she was there. She suggested maybe they were supposed to go over the effects of the radiation / chemo process we are about to start, and they said there really weren't any. Somewhere, the SCCA had called, and set her up for another appointment to talk about the lumpy thing under her arm, that they already decided was nothing. While waiting for the shuttle to take her back to SCCA, she checked out the place she will be living for a month. They have two floors for transplant patients, and the transplant intensive care is in the same unit, so if she gets complicated, she will still be dealing with the same crew, they will just add a few more folks to the team.
After taking the shuttle back, she met with Dr. Herr again, where she received no new information. She felt the day was a waste. Maybe they schedule something every day to keep the out-of-towners occupied. Troy, the scheduler, is playing a giant game of tetris, trying to match up all the people, and rooms, and time.
On Saturday, Linda and I went to the airport to get Saint Nancy (Linda's Mom), while the kids finished their three week long Risk 2210 game so we could have the dining room table back.
Back to today, I was doing sound at church today, and Richard was working in the nursery, so we left early. Nancy stayed home to be with Tristan, who had a bit of a fever. Brian stayed home, because he had stayed up reading till after 1:00. Linda and Robin came to church, but I didn't see Linda till she was in the Joys and Concerns line, so I wasn't able to support her as she announced her fears about the coming procedure. After church, she went off to lunch with Melissa Caeton, and the guys and I went home. After lunch, I decided I should probably spend the afternoon doing NOTHING, so I proceeded on that track. When I woke up, Linda and I talked about going for a walk. I had been lying on my back, with Jaymes, the cat, on my lap. When I sat up he kind of glared at me, and I set him and the blanket off my lap, whereupon he got up off of the blanket, climbed back on my lap and sat down. He apparently thought I should do nothing too. Oh, well, we went for a walk anyway, and he didn't join us.

Thursday, February 5, 2004
I chose to come to Linda's appointment with Dr. Stirewalt, because I basically haven't seen her this week. Last night, I went over to Dave Clouds to watch Star Trek with the guys, and didn't get back till 23:00. Yesterday, she had fun taking the shuttle over to the U, for some appointments about the radiation therapy, but the shuttle didn't get her back in time for the next appointment. Because of that, she didn't get home while I was there. Linda found out that estrogen has at least 402 specific functions that it enables. Her bodies ability to generate it will be ZERO, after the radiation, so they will be starting replacement therapy.
She just got out of her dental appointment, and her mouth is still numb. Ian, the nurse, is a real character! He has been telling us stories of people who have invented things, and he gave Linda some pointers on dealing with her lower back. On the 11th, she does a data review, and on the 12th she gets to meet Dr. Hickman for her new Hickman line. Dr. Wolfgang Herr, visiting from Germany, has come in, and they are discussing her rash, which is going away in the original places, and showing up in some new places. Dr. Herr is replacing Dr. Anderson as the primary physician.
Results of the CT scan, show no problems, and the lump appears to be nothing to worry about. Since they did a high resolution CT scan, they noticed a 5mm something in the right lung. It could be some kind of infection, possibly a fungus, that her system has now cleared, but the dead bodies still remain. The bone marrow was fine, blasts were 3%, so she is officially still in full remission. Heart function was 52%, which is on the low side of normal, pretty much where they expect it to be after this much chemo, and fine for what they need to start the transplant. The lumbar puncture was fine.
Some of the discussions we have had with Ian are pretty weird!
After a snack in the cafeteria, we are now waiting for the radiology department to get ready for Linda's mamography session. It turned out we were in the wrong place, and the receptionist should have caught it, but didn't. Eventually they squashed and zapped her, and we went home for dinner. Dewey had been watching the kids, and we sent him home to take care of his own kid. Linda and the kids have now gone swimming at the Redmond pool, maybe with the Meitzners.

Wednesday, February 4, 2004
Yesterday, Linda spent a lot of time in classes about various things, but didn't fill me in much. She also had a chest CT scan to check out a lumpish thing that has been around, on and off, for 10 years. Today she didn't have to go in till 13:00.

Monday, February 2, 2004 9:15AM
Gosh, a whole weekend without doing anything medical, with the possible exception of drugs. Linda's rash, that started when they put in her last line, continues to spread. It itches like crazy at times. We almost got the evening off on Saturday night, but I had to go to Meitzners to get Tristan because he was haveing some athsma. We did get the night off, after dinner, and ended up watching two DVD's, Hitchcocks "Stranger on a train", and "The Claim". I dropped Rogin and Brian off at the bus stop on the way to work, and It turns out that Robin left his backpack in the van when he got out. Tristan is staying home today, with a sore throat.

Friday, January 30, 2004 8:44AM
Starting out with a very unsatisfactory half hour call to the prescription insurance company Medco, we continued with a meeting with the social worker John Eric. They have been talking about how we handled life the first time around. I noticed that she had a couple of tissues in hand when I walked in. He asked if we were overwhelmed with the support we were getting, and Linda said no, my answer is more like "sometimes". They are now going through the bipolar history. In the middle, Lupe from the finance department called to say we could have Dr. Wenker fix the most recent filling he put in, we should set up the appointment, and have them call Dr. Schuberts office at 206-288-6455 and they can figure out what to do. Back to the room, Linda is worried about their changing her psych meds, because she is afraid of getting depressed. We discussed what she does with her copious spare time. Books, movies, email, phone... John can help put us in touch with people who know how to do fund raising to cover all the extra expenses. He will check on whether there are ethernet ports in the rooms.

Thursday, January 29, 2004 14:10PM
Lupe from the finance office says we are doing an allogenic mini transplant for $125,000, instead of a full transplant for $200,000. Our plan has $1000 deductible per person, with $4000 for all of us , so we will hit that soon. We haven't gotten full approval yet, but she expects it tomorrow. The transition nurse will contact us for after transplant care. The nurse at UW Hospital will get approval for hospital admittance. We will be responsible for dental stuff, including the filling Dr. Mark Schubert decided was necessary. We might be able to get Dr. Wenker to do it cheaper than Schubert. Other costs will be for drugs, dental, housing. Lupe doesn't know much we might get hit by outside of the medical. I wouldn't be surprised if we get to pay another $2 or $3000 for drugs. SCCA keeps track of which things have been billed against the $250K transplant max, and which goes against the $2M lifetime max. They will watch for the Insurance Company putting bills against the wrong max. Lupe will mail us some stuff on raising money to handle all the extra expenses. The social worker also has information on that subject.
While waiting to see Ian before the 15:00 meeting, we discussed the current state of her line. One of the things they might do is to run a new one it before taking the old one out, so they can use the same holes the old one used. We talked to a lady from Columbus Ohio, who had been here for a couple of weeks, dealing with Non-Hodgekins Lymphoma in her husband. Scott and I have been waiting for the 15:00 meeting for the last half hour. Shortly after 15:00 wandered by, we moved into the conference room where we are to have the meeting, but they are having a line party somewhere else, and they are telling us that the rest will show up soon. Linda just walked in, and said "No more line, they pulled it".
Dr. Derek Stirewalt (pronounced "stairwalt"), Ian Anderson, RN. She will go to the first floor to get a blood culture, later. She will start on keflex, vitamins and some other stuff.
We will do a lot of tests over the next two weeks. The will check out her lungs, and heart. The diagnostic Lumbar Puncture is to check to see if the leukemia has migrated into the fluid around the brain, because the chemo doesn't give much help there, but the radiation does. They will do a lot of these tests about 80 days after transplant to help Dr. Kraemer set up the follow up plan. OK, the radiation will KILL ALL HER MARROW. It is very rare for a person with this good a match to suffer a rejection. Most rejections happen with CML. Dr. Stirewalt doesn't expect to have any rejection here. Scott asked about freezing cells in case of a graft failure. The doctor said they don't have good data, but not all the cells survive freezing. The chemo can cause damage to the bladder on it's way out. 5% can get bleeding, and it can get severe. She admits to the hospital on the 17th, for the chemo, she gets to recover on the 19th, and gets Scotts cells on the 20th. One of the biggest complaints they get mouth sores, because of the chemo affects all fast growing cells. This is called mucositis, which is happening all through her digestive tract, which can cause nausea, and diarrhea. Day 0 is transplant day. day 14 to 21 we can expect to see Scotts cells start showing up in her blood. They will let her out when the counts are up, and can eat and drink enough. One of the worst things is damage to the liver, called VOD (venous occlusionary disease). They have some new treatments, which they don't use unless they have to. It can start from day 2 till day 30. 40-60% chance of GVHD. They try to prevent it with some of the drugs they will give her later. They might have to change her bipolar drugs while they are doing the transplant thing. Some people are still on immune suppressant drugs after 2 years from transplant. First remission transplant survival is 50-60% to 5 years, second remission survival to 5 years is 30-40%. We are in this later category. This is match related donor statistics, but the studies are from 10 years ago. He is trying to make it look a bit better now, but he had to state those statistics. 25-30% treatment related fatality, with 25-35% relapse problems. So now we get to sign all the consent forms. Information can be found under leukemia/lymphoma society, and the bone marrow registry. This is not a mini transplant!

Wednesday, January 28, 2004 12:24PM
OK, here I am at the Seattle Cancer Care Alliance, waiting for Linda and Scott to arrive from the airport. Yesterday went reasonably well, as I heard no major complaints about problems. Linda was tired when I got home at about 19:30, after having given blood.
This morning, I was prodding Brian, and helping Richard through their homework, when Linda came in saying she needed me Right Now! Somehow her line had gotten tugged, and it managed to pull out an inch or two. I had the Answering service have Dr. Kraemer give us a call, and since she wasn't in major pain, and it had only bled a little bit, he decided they could look at it at SCCA later today. Everything seemed OK, when I left for work, and I haven't heard anything different as yet.
12:32: Linda and Scott just walked in, and spent a couple of minutes talking to Jim, the lunch time receptionist. They are now having fun filling out forms, Whooopeee!
13:12: We moved to exam room 10, and Dr. Larry Anderson, Oncology Fellow came in to check on the history. We are having a great time trying to remember all that has happened, and going over todays events. He examined some curiosities along the way. He checked out the Groshong problem, and will have one of the nurses check it out too, as they work with it more. They will do another bone marrow biopsy to make sure that there are less than 5% blasts before they start up the transplant machine. If there are more than that, we will do another round of chemo before starting. They will also do a chest X-Ray, a spinal tap, test the length of her eylashes, and anything else they can think of.
Tania came in, and made sure we knew she would only be here for today, and Ian will be back tomorrow, but not on Friday. She confirmed we will be handled by the yellow team, and gave us a contact sheet with all the contacts. We moved my arival tomorrow back to 14:00. The logistics of the radiation will be that she gets radiation in the morning, followed by a visit to the SCCA, and more radition in the afternoon. That starts on St. Valentines day, finishing on my birthday.
15:20 We are now down on the first floor getting blood drawn, and we will go up to the second floor for Linda's chest X-Ray. We finished up about 16:00, I went home, and Linda and Scott were making noises about checking the path to Carol Nelson's house.

Monday, January 26, 2004
The weekend went pretty good, with the exception that Linda let herself get a bit dehydrated on Saturday, and found the floor really attractive for a while. This lasted about five minutes, and she was fine after we got some Gatorade into her. We went to church on Sunday, and had most of the Meitzners over for dinner.
This morning Linda called me to tell me the latest from the Hutch. We now have two appointments there this week, both Wednesday and Thursday afternoons. We are now part of the "Yellow Team". The schedule looks a bit like this: outpatient radiation twice a day February 14 thru the 16th. This will make her feel REALLY BAD. If that isn't enough, she gets admitted on the 17th for really serious chemo, which will make her feel worse. Then on the 20th they start the actual transplant stuff. She thought she was feeling pretty crummy with the last round of chemo, but they say, "she ain't seen nothin' yet". The good news is that with Scott being a full 10 point match, they don't expect any major GVHD (graft versus host disease) problems.
The thing that was keeping me awake between 3 and 4 this morning, THE MONEY: I signed up for Premera Foundation Plus, which is the same as the other Premera plan I looked at, with the exception that they don't cover UWPhysicians. Well no big loss, I didn't have a great time with them before. The nasty part is that guess who the Hutch is part of? You guessed it, UWPhysicians! I was worryig about where I was going to come up with another $20 to $50,000, when I can't come up with $5,000 for the taxes. I guess that the finance people called Linda today, about some additional paperwork that is required from Dr. Kraemer, but that eventually the finance thing works itself out. Worrying is such an incredible waste of time, and energy! If I could just convince my brain...

Thursday, January 22, 2004
Yesterday went better, but I wasn't around much to see it. Linda was feeling good enough to let me go to the Wednesday night Star Trek party with my recumbent bike friends. I guess I was around in the morning, as I paid the bills, then typed a bad character while trying to erase a floppy to save the financial data on. I freaked as I saw it delete my business billing spreadsheets, all the files in the root directory of my laptop's hard disk, and proceed deleting everything else. I stopped it having not lost much, but I spent the rest of the morning and part of the afternoon saving things to CD, expecting it would not boot next time I asked it too. I finished that, around 14:00, having left it running while driving to work. I closed my eyes, and told it to restart, and much to my surprise, it booted! After picking myself up off the floor, I shut it down completely, and turned it back on, it still worked! I decided I would keep using it till I find something that doesn't work before wiping the disk, and starting over. I guess it was time to do a backup anyway. When I came home from Strobe, I spent half an hour building boxes for my product, before Dave came by to take me to Star Trek at Dusty's house in West Seattle. Getting home at 22:30, I spent an hour finishing a paper for one of my other customers, and mailing it off.
This morning, I spent about an hour finishing the boxes I started yesterday, so I could get the first layer of paint on them, (I have to ship tomorrow), and spent 20 minutes on the phone in the middle talking to How Kuff, about last nights paper.
As I was leaving this morning, Linda and I were discussing that we haven't heard for the Hutch yet, and she is getting a bit worried. Her blood hasn't been checked in two weeks. She is going to call Dr. Kraemer, and see if he can find out what is happening.
She talked to a doctor at the Hutch this afternoon, who actually had her file. Somehow he didn't know what the current status was. When she told him the current status, he said they should get going right away, she should get a scheduling call tomorrow.

Tuesday, January 20, 2004
Yesterday went off pretty good. Linda went to see "The Return of the King" with Richard in the afternoon, and took him to archery in the early evening. She was tired after all that though, and was in bed by 21:00. She had a bad night, with gas cramps and some nausea. She was still feeling crummy in the morning, so I got the kids started, and made ther snacks, till Ryan and Megan got up just after 8:00. Ryan did a great job getting them on the bus. Linda was sleeping when I called around 10:00, but she called me at 11:30, to say she was feeling better, but was NOT interrested in food.

Sunday, January 18, 2004
Early, no one else is up. Friday seemed to work ok. Linda is getting her strength back, and her body is complaining of lack of exercise. Yesterday, Brian and I went to see "The Return of the King", and Linda and Richard were supposed to go to the 16:15 show, but they got there too late, and Richard didn't want to wait till 20:00 to get to Mathews place for the night, so Linda dropped him over there, and came home. After dinner, the rest of us watched the rest of a Ted Dantzen version of "Gullivers Travels", and it was pretty good.

Thursday, January 15, 2004
Dr. Kraemer called to give us the news that according to last weeks biopsy, Linda is Officially in Remission! He will be officially passing off control to The Hutch in the next day or so, and we can expect to hear from them in the next week. Linda has been worried about this whole transplant thing, because the statistics aren't real nice. She said today, that she is getting a handle on her attitude, but it is still pretty scary. We discussed various analogies, one being the final exam at end of term, bad word final, let's not go there. I suggested maybe this is the thesis paper at the end of college, so it is a lot of work, but when it is done, you are done with school.

Wednesday, January 14, 2004
Linda seemed to feel better when she woke up this morning, so I went to work. I spent all day installing a very fancy bathroom fan/light in the shower at Strobe Data. I did manage to call in the afternoon to see how things were going, and Megan told me that she had Tristan, that Robin and Brian were taking the bus home, and that Linda was with Richard meeting with Patty, his school liaison person. When I got home she still had some life to her. She still had her smile! She spent a while doing homework with Robin, and Brian claimed to not have any. As I type this, we are sitting next to each other on the couch, each typing away on our respective laptops.

Tuesday, January 13, 2004
This morning Linda was feeling a bit sick to her stomach. I got the kids ready for school, with a little help from Ryan, and then took them there. Tristan hadn't yet figured out where to go for his class, so we got directions, and found Polly Collins, his teacher. She explained to me that the kids don't come in till 9:00, till then, they play outside. OK, we'll get this right soon.

Monday, January 12, 2004
I started bringing up the house lights around 6:50 to wake everyone up. We got them all fed, the remaining paper work filled out, lunches made, and shoved them out the door in time. Whew! Linda wasn't home at 10:00, so I guess she was sticking with one of them.
I got home at about 17:30, and left to take Richard to archery at 17:40. I got back from that at 18:15, and had 25 minutes to eat diner, and left again to get Richard. NO rest for the wicked!

Sunday, January 11, 2004
Yesterday, was our family Christmas get together, and Linda seemed to survive. Her apetite is improving, as she managed to make reasonable attempts at all three meals. Our new-old(Ryan)/new(Megan) roomates arrived in time for lunch. I think a good time was had by all. When Ryan and Megan interviewed for the position, neither of them had a job, and now they both do. Of course both of their jobs are near where they, now, used to live in Seattle. It will be good to have someone else around the house to watch Linda for me.
Linda is stressing about the kids starting school tomorrow, I think the ducks are in a row, but we will find out. After the little ones are installed, she might work on getting Richard registered, but I think she still doesn't agree with me on that. Oh, well.
After church, Richard and Brian went to visit their friends the Chapmans, while Linda mostly napped. I left to get them with Tristan, in time to get Richard to his Jr. Youth Group at the church. We ended up half an hour early, so we went to buy backpacks for Tristan and Brian, then dropped Richard off. We got home just in time for dinner, and I worked a bit, then went to get Richard.

Saturday, January 10, 2004
Yesterday, I left work at 13:45 to take Linda to her to Dr. Kraemer's new office, but ended up meeting her there instead. While she was getting stabbed, I dropped Richard and Brian at Mathew Millars for a while, went to the library for a new kid book on tape, took Tristan to the pediatrician for a immunization shot, and got back to Evergreen in time to catch Linda. Richard and Brian arrived at home seconds after we did, and I left most of them to watch a movie, while I took Richard to Archery. I came home, and made sure Linda's laptop was OK to receive mail, then went to get Richard again, stopping at KFC to pick up dinner, on the way home.

Friday, January 9, 2004
Linda gave me a call yesterday as she was on the way to Dr. Rogge's office to tell me she was getting tired, so After, I met them at a restaurant near there for lunch, and I drove for the rest of the days activities. We went from lunch to Dr. Kraemers office in Bellevue, for the blood draw, then to the drug store, for the prescriptions that hadn't showed up by mail yet. We also went to the local CD store to pick up a CD Linda had special ordered. We then went home, and Linda and I opened our Christmas presents. She spent a fair bit of time napping, in the afternoon, and evening, and had some trouble sleeping in the night.
I think today will be a bit easier, as I don't think they have much to do outside the house. I will go take her to Dr. Kraemers new Kirkland office for this weeks bone marrow biopsy.

Thursday, January 8, 2004
Sorry for no update yesterday, we had no power, or network, and it was very busy. When I got there yesterday at 7:30, Dr. Kraemer was there, and they were discussing getting out. Everything was fine, except for maybe platelets, and it was freedom day. We set up for me to come get her around noon. She was a little nervous about coming home to no power, but we made it. I went home and got the kids going and fed, and about 11:00, Robin and I left to run some errands, and get Mom. We went to McLendons, and got a couple of electric heaters for the downstairs rooms when the power comes back, and I asked for 12 press-to-logs. There was a bit of confusion, because the loading slip was for 12 bags of pellets. She wanted to give me my check back, but it was the last one I had, so we figured out how many press-to-logs I could get for 12 bags of pellets, and the number was 80! Well that should hold the back end of the old blue van down in the slush. We went to the Hospital, and packed up Linda, and left there around 13:00. When we got home, Lori McConnel had arrived to be with the kids while we did errands. We found the Northshore School District Office, and signed the paperwork to have Brian, Robin, and Tristan all go to the same school, which isn't our neighborhood school. We had been hoping to go to the school, and do their paperwork, but they were closed for the day. We did a short trip to Trader Joes, and to the dairy for milk. I then took Linda home, and continued by myself. It turned out that dinner would not show up due to weather conditions, so while I was out, I picked up makings for dinner. The kids absolutely love what they call "Chips and Dip", which I made on the old propane camp stove. The downstairs was nice and toasty with the press-to-logs in the fireplace insert, and we watched a bit of "Finding Nemo" on the laptop before bed. It was so nice to have everybody in one house! I will now make Linda a latte before I show my face at work for a few before coming home to get Robin and Brian to their orthodontist appointment around 10:45. Linda is still very weak, and I'm not going to let her do much driving by herself yet.
OK, we agreed she could take them down, and call me to tell me how she was feeling. I think she has two stops to make while they get their teeth tweaked.

Tuesday, January 6, 2004
I got in around 7:05, and Linda woke up, and turned on the light, and had had a good nights sleep. She took down her Christmas Tree, and we went for a walk to the end of the hall past the elevators. We stopped in the SunRoom on the way back and were watching the snow news on the TV, and talking to the nurses as they came in for coffee. I had to leave before Dr. Kraemer arrived, in case kids were waking up. Linda called a bit after I got home, with the results of the visit. All counts are OK! Thanks to all those who did the "white cell dance"! Her white count is over 9000. Reds are happy, but platelets have dropped a little, so she might still need some more of those. Dr. Kraemer stopped the last antibiotic and pulled the Neutropenic Precautions sign off the door, and left the door open! We still haven't jumped through the "24 hours no fever" hoop yet, so she doesn't come home today, but probably tomorrow.
For those of you not in the Seattle area, here is a picture out our living room window and one from the porch looking out the driveway, and another looking at the house from across the street.
Linda tells me she is trying to get her next bone marrow biopsy set up for tomorrow before she leaves. She complains that she won't remember anything of going home, but I think that is just too bad. I just won't let her open her Christmas presents when we get home is all.

Monday, January 5, 2004
Linda was sleeping when I got in around 7:20. Dr. Kreamer came in about 15 minutes later. There were no results yet. Linda had gotten some platelets yesterday, and her fever spiked up to 38.5 in the evening. Everything seemed fine, but Linda had trouble sleeping. She was sitting in the chair looking out the window, dozing, and having bad dreams from 4:00 to 6:45. She decided to get back in bed, and a few minutes later I show up. Johndude was in saying good morning when Dr. Kraemer poked his head in to say that he had pried the white count out of the lab: 4000! They didn't have the ANC number yet. That is over twice the white cells she had when she came in. It looks like we have the counts today, we just have to get the temperature stabilized, and stop the antibiotics. Maybe we can have an adventure getting her home in the snow tomorrow. Brian spent most of the afternoon with Mom, and when HomeZone was over Robin, Tristan, and I went over for the last of "War Games".

Sunday, January 4, 2004
I got in a bit late, but there is good news! White count: 1200, neutrophils: 230! So we need to wean her off of all the antibiotics, the IV food stuff, no fever for 24 hours, and we are free soon. The real number we need is 500 on the neutrophils, but we will probably have that tomorrow. The rest of the stuff could take longer. On the darker side, Linda woke up at 4:00 very confused. We need to get her out of here so she can sleep! I would have been completely nuts long ago, from lack of sleep, if I had to stay here. On the good side, by 5:00, she was hungry, and ate some yogurt. Now she is looking at her breakfast tray, and trying to decide if she can do it. She is drinking her orange juice, but isn't sure about the omelette. They say she need to start eating at least 2000 calories a day to get off the TPN (Trans Parental Nutrition). It could be tough to eat that much yogurt. She could only do one bite of the omelette, and the english muffin seemed more like english leather. All four guys and I went over to visit Mom for a bit in the afternoon, and we dragged Mom down to the stairway door on the way out at 16:45.

Saturday, January 3, 2004
Linda had a pretty rough night. She was trying to get to sleep early, but the nursing staff was not cooperating. She finally got the atavan at 1:15. She ended up calling me at 23:00, 0:00, and 2:00, waking me up each time. They got her up at 3:30 for a bunch of tests. Ididn't get back to sleep after the last call. I'm not sure if I can stay, this morning, because Richard spent the night at Mathew Millars, so I should be home before anybody wakes up.
10:00 Linda just called with some good news: this mornings white cell count was 800! This is more white cells than we have seen in weeks! Maybe we are coming out, let us hope so.

Friday, January 2, 2004
The day is dawning, clear, cold, and white. Plenty of ice on the way in, but the worst of it was right near the hospital. I was having fun maintaining direction on the way down the hill next to the hospital. Dr. Kraemer was already here when I got here at 7:15. He said he had left early because of the road conditions. Linda had her usual headache. Doctor says she gets no blood products today. White cells are still zip. She did report having eaten a little yesterday. She had some weird dreams which we figured were from the IV food stuff. She said she might try to wean herself from that stuff, I.E. eating more. He asked if she had had no nausea, and I got the impression that that might be an exaggeration.
The doc suggested that she get up and either sit in a chair or do a bit of walking today. She had me chase him down to find out about headache treatment, and he said it was already on order, she just had to ask for it. I think she is going back to sleep, and I have to decide to hang and wait for road conditions to warm up, or leave early to get home eventually.
I stayed a bit more because Linda had gotten an earworm stuck in her head, so I played a bit of David Grisman for her, on the laptop. The tech came in for morning vitals, and mis-read the tempadot as 36.9 when it was 36.4. shortly thereafter, Linda started shivering, and calling for warm blankets. She was starting to lose the shakes by the time I left at 8:45 to go check on the kids. I had a bunch of errands to do in the afternoon, and Linda was feeling pretty good, and asked if I could leave Brian, Robin, and Tristan with her. This worked out pretty good, except that she was tired about forty minutes before I could get back. The kids and I spent a pretty quiet evening, and went to bed at a reasonable time.

Thursday, January 1, 2004
Happy New Year! I got in this morning around 7:15, and Linda sat up, and was feeling pretty good. This is the first time she has felt at all well, when I have been there, in at least a week. Johndude came in, and said she would be getting platelets today. We broke out the clippers, and got rid of the last of her hair that hadn't fallen out yet. When Dr. Kraemer came in, he said she could have red cells today, or tomorrow. They seem to think the fever problem is probably an infection in the Groshong line. We don't know if it was just a very conscientious tech or what, but 0.02 was reported as her neutrophil count this morning. We are being very guarded about this, as it could be nothing. The significance is that if she has more tomorrow, they might keep the line, if not they will pull it, because of the infection, and go in some other way. We started watching a Norweigian movie, but I had to leave to do the parent thing.
After Lunch, the guys and I went to see Linda for a bit. We took one of Linda's Christmas presents, which she opened. It turned out to be "Pirates of the Carribean", and funny thing, I had my laptop along. We watched the first three chapters, but in the fourth, Linda got tired and kicked us out. I let the kids argue over which game they would play while I napped. After dinner, we went on an adventure to get milk in the snow, and rented a newer version of "Heidi". Afterwards, we called Linda to wish her a good night, and her fever was on the rise, and the nausea wasn't doing real well either.

Wednesday, December 31, 2003
Even with snow, Dr. Kraemer is very punctual. I saw him on his way out at 8:00. I figured I might have 15 minutes leeway for snow, but no. There is no news on the counts front. The search for the elusive white cells continues. I think they have all gone to Maui. Linda was still sleeping when I got in, or at least trying to sleep. She had again had a crummy night. If I recall correctly, her temp was 36.9 this morning. Tristan had a bad dream, and came into my bed a 4:30, but it didn't bother me much. Scott and Sandy may go home today, they hadn't decided last night. They weren't up yet when I left. This having a cough really sucks, because I can't spend anywhere near as mich time with Linda as I should. I come in for an hour or so in the morning, when I'm feeling good, but the rest of the day is pretty much shot. I used to come in two or three times a week, and she would keep me up too late watching movies, but we haven't done that since I can't remember. Maybe today is the day my coughing will slow down. Usually in the evening, it gets worse. I don't know how she does it, I would never sleep here at all, with pumps going brrrrrrup, brrrrrrup, in ever varying patterns, and people in and out all the time. Maybe after three and a half weeks I would sleep anytime too. She has been getting platelets about every other day, as these fevers just burn them up. The kids need someone else to play with. Richard went over to Matthew Millars yesterday, but the other ones are starting to tear each other apart. I tried to find someone for them to play with yesterday, but with no luck. Well, it is 9:00, and I guess I should go home and feed them.
When I called her at 11:15, she was still trying to sleep.

Tuesday, December 30, 2003
I think Linda had a bit of a rough night. Her temperature was still doing the roller coaster thing. I didn't wake up till 7:30, so Dr. Kraemer had come and gone when I got there at 8:15. Linda didn't really wake up while I was there. The news I got was that they were going to try 24 hour tylenol. Rather than regular saline, they had a bag with some calories in it hooked up, because she has had such a rough time eating. Scott, Sandy, and Diana went over to see her for a while in the afternoon, and said she was feeling a bit perkier, but was settling in for a nap, as they left. I tried to call, but she had turned off the phone. We poked around in her old blood charts, and this round is not so long as we might have thought. The first round, she didn't get out till day 28, and there were no white cells till day 24. I think we are currently on day 23.
When I dropped by the hospital with a milk shake from Dick's, at 20:30, Linda was feeling bad again. Her fever had spiked again, and was on the way back down. She was feeling so crummy, she had to sit in a chair to wash her hands after going to the bathroom. I couldn't stay long because I had been coughing my guts out the whole time I had been driving around. At 22:00, I sent Scott over on an errand to take her some Gatorade.

Monday, December 29, 2003
This morning dawned bright, clear, and cold. There was a thick, very persistent layer of frost on the car when I went out. When I got to the hospital, I found Linda had had a terrible night. A tech came in at 1:30, turns on the room light, and says cheerily "Good Morning". This isn't the way to win friends and influence people with Linda. She explained it was the middle of the night, and could he please go about his tasks quietly, where he proceeded to chatter happily, and things went down hill from there. They ended up changing Her dressing at 2:00. Dr. Kraemer came in, and decided to give her some red blood cells, and will adjust the antibiotics to help the schedule. April was going to adjust when drugs were scheduled for, so maybe Linda could get some sleep.
One of the things we discussed with the doc, is that Linda is feeling more normal, unfortunately, for this stage of the game. She just managed to skip this part last time around, and now it's catching up with her.
17:40 Linda just called to say she had a temperature of 40(104). I wish I could go over, but I don't think it would be wise with my cough.
19:50 Linda just called to say her temp had come back down to 37.5(99.5). They didn't do anything in particular, she just napped, and sweated it off. They also forgot to bring her lunch or dinner.
21:30 Linda just called saying her fever had spiked up again as she got out of the shower. This was the full shakes and vomiting version. They were giving her compazine to stop the nausea. Sometime this evening, a new Doctor, from the Infectious Diseases department came by to introduce himself. He is going to try to find exactly what Linda's body is fighting.

Sunday, December 28, 2003
I went over for a while this morning before church. There appeared to be a bit of a gravity storm, as we kind of napped together till about 8:15 when they brought in Linda's breakfast. I had to leave at 8:30 to feed the kids, and get to church. I guess I did OK, because we had our pancakes, and made it on time. After church I got interviewed by KIRO on how I felt with Alex, our new minister being in the hospital from a hit-and-run car accident right in front of the church. I have no idea whether they used it. Scott took Richard and Brian to see Linda for the afternoon, while Robin, Tristan, and I went to Costco. On the way home, Scott rented "A Christmas Story" which we watched. I didn't go to see Linda because I had been coughing pretty bad all afternoon. I did talk to Linda in the evening, and she was feeling much better. She may have turned the corner when Scott and the kids were there. I hope I am feeling good enough to go see her tomorrow.

Saturday, December 27, 2003
My fever was gone, so even though I am still coughing, I went in this morning. I figure we have to strike some compromise between health, and well being. It is better for us if I can see her than if I can't. She was really happy to see me, even though she felt bad. She did manage to eat a little bit while I was there, but she isn't feeling very good. Her counts are still in the toilet, they just haven't moved. I guess they count the days the same as they did before, so today was day 20. I think we had one round that her counts didn't come up very fast before, we are just getting impatient I guess. I went home around 9:00. Scott spent most of the afternoon with her, getting his laptop set up for her with a year of a spam filter service he likes. It should all work with her existing email address, so don't panic. After dinner, I went back to spend some time with her and we watched the rest of "Octopussy". She was really sleepy by the time I left at 22:00. I hope we get some sleep tonight. Oh, I stripped off, and made a link to, my old notes to speed download. You can find the link at the end of this page if you want to read what I wrote from the start till last April.

Friday, December 26, 2003
This morning the alarm woke me up at 6:00. This was unusual, because I am usually awake by then. I looked out my bedroom window, and could see stars, I was not sweating or freezing, and I was pretty sure Linda's counts would start their climb out of the cellar today. My nose is still messed up, and I still have a cough, but life was pretty good, and I went back to sleep till Linda called at 8:30. This is probably the first good night of sleep I have gotten in a week! We had a pretty good Christmas, all in all. All the kids got what they wanted from Santa, though Brian thought he had been stiffed for a while. It seemed that Brian wanted cash, and Santa got sneaky on him. Brian dint notice the words printed on the inside of the envelope containing a sheet of purple construction paper, all he saw was the paper. He eventually found the other envelope hiding between two other sheets of purple construction paper downstairs. The kids just had to open all their presents, and appear happy with them. I saved most of my presents to open with Linda when she gets out.
Linda was feeling a bit low when she called, but hearing the way I met the morning cheered her up a bit. She had woken with a temp of 39, which delays her possible getting out another day, because it has to be down for two days first. She hadn't heard today's numbers as of the time of her call. She would really like to get out, so she can see us, but it probably isn't wise, while we are still plague ridden. Yesterday afternoon, along with helping Scott drop off his rental car, I dropped off some stuff for Linda at the hospital, but I didn't get to see her. This is the hardest part of this is not being able visit her. All the other times, I was there at least once a day, but with this flu, I can't go into the hospital at all. Imagine: sick people can't go into the hospital, go figure! I think it wearing on her too, but there isn't much I can do other than try to get healthy again.

Thursday December 25, 2003
Linda's temperature spiked last night up to 39.3 (102.7), so they took some blood cultures. She had made it back down to almost normal by morning.

Wednesday December 24, 2003
Linda called with the news just after 8:00, and it is good. She felt as if she was having a fever, with temps around 37.9, but Dr. Kraemer says his magic number is 38. He also noted that her rashes are getting better. From this he deduces that the white cells are coming back, they just all have something to do, so there aren't many floating around in the blood to count. They had a discussion about the length of her leash, and he still wants her to stay on the second floor. In other words, we are still grounded from the cafeteria incident. Dr. Kraemer gets tomorrow off, and Dr. Oo will be in to see Linda. They even discussed her checking into a motel if she gets out, because home is full of the plague. Robin appears to be getting it now, and I'm sure Richard is not far behind. Today, I have a haircut scheduled, but I'm not sure I can drag sick kids to the University District, so I can get a haircut.

Tuesday December 23, 2003
The plague arrived last night. I was awake most of the night trying to keep from drowning in drainage. This also means that I can't visit Linda! This morning, I went in, and handed the paper to Peter, so he could give it to Linda, said hi from the hall, and left. I was pretty worthless at work, and had to leave to take Jan to the airport before 10:00. Linda got her bone marrow biopsy today, and seemed coherent afterwards, but who knows if she will remember anything. I spent the whole afternoon on the couch, with Tristan on the other one. By 17:00 I was able to sit up, but I think I am losing it again. I may be able visit Linda before she gets out, but that is not certain. Scott and Sandy arrive tomorrow evening. Scott offered to catch a shuttle from the airport, and the way I feel, I decided to let him. My temp is 100.7, which is pretty hot for me.

Monday December 22, 2003
Yesterday, Linda got two units of blood. Richard and Robin spent most of the afternoon with her, and finished watching Mrs. Doubtfire. Tristan had been sneezing a lot, and didn't want to go, and I thought that was wise. Brian had been sick for two days, and didn't think Mom would be safe if he went either. While the kids were doing that, I went to McLendons, then Fry's to find Dr. Kraemer a new flashlight. His freebie drug company advertisement was getting really tired. After dinner, Linda and I watched "Music of the Heart", and I exited the parking lot at 23:26.
I woke up at 5:00, but didn't make it to the hospital till 7:20. I decided to try the espresso machine in the cafeteria again. After two tries for a latte, the cashier poked around inside the machine with a knife, and I got something resembling what I wanted. Linda was still trying to sleep when I got upstairs, after the last unit of blood finishing after midnight, then getting two different antibiotics. Her temperature was edging up again this morning, after being down all day yesterday. Dr. Kraemer came in at the usual time, just before 8:00, without a flashlight, so we made him open his present. He was happy to see the bulb wouldn't burn out, and the batteries would probably last a year or so. Johndude got all ready to do more blood cultures, but the doc said "Not necessary now". We discussed what The Hutch schedule might be like. As soon as she has achieved remission, and is back to feeling good again, then it will depend on The Hutches schedule more than ours. When they have room in their schedule, then we go. This could happen in January some time. If it takes too long, we may do another round of chemo. It depends on their schedule. As I was leaving, they were dragging the chest x-ray cart in to take a peek, because of today's temperature. They are going to take another bone marrow biopsy tomorrow morning.

Saturday December 20, 2003
This morning Linda and I are paying bills! I have her captive, and other people woke her up. We are expecting more blood today, but Dr. Oo will be in shortly to decide. Dr. Kraemer is off doing his Christmas shopping. Dr. Oo says the other bug is Staph. He discussed the various antibiotics, and when we might change that particular cocktail. Linda's Headache has been getting worse. The doctor discussed what that might be, but the worst isn't likely, because we have just killed off the leukemia. We discussed what drugs to use to control the headache. Her white count went from 400 to 600, but is probably noise. Her ANC went from 0 to 0, and needs to be above 500 for her to get out. Normal for that is like 5000.

Friday December 19, 2003
This morning, Dr. Kraemer informed us that Linda had two different bugs infesting her blood. He will adjust the antibiotics as he finds out what the bugs are. Her fever was down to 101, but still not normal. Platelets were down to 11,000, so she is getting platelets this morning. I was still around when they showed up, but they weren't what Linda was expecting, so Susan went out to check with Dr. Kraemer before he left. The doctor decided whatever it was, was OK. Linda has a recollection the doc was very specific about this feature, before, but he wasn't today. Three of the boys came over in the afternoon to watch Mrs. Doubtfire with Mom. Brian stayed home because he was sick.

Thursday December 18, 2003
Linda's temperature was 37.9, so it was coming down this morning. Dr. Kraemer decided we should start pumping the GCSF now too, to get her immune system going again. Shortly after he left, John Sincock came in, and was called out for a phone call. When he came back, he said the call was the lab saying that yesterday's blood culture had "gram positive rods" (bacteria) in it. That was probably why she had a fever. He expected the doctor to change the antibiotic today. Since her temp was coming down, it looks to me like the other one was doing the trick, but a more specific one is probably better. She was feeling better today, and was talking about a shower and a walk.

Wednesday December 17, 2003
When I got in, Linda was still sleeping, and I guess they changed their mind on platelets, because her numbers chart had platelets listed for yesterday. Today number of 400 white cells, down from 700 yesterday, indicates that her immune system is on vacation. Dr. Kraemer said she could get rid of the IV pole anytime she could truster herself to drink enough, but she wasn't ready yet. He thinks that the spots that appeared yesterday, are the chemo aggravating old sun damage from when she was a kid. She doesn't have a lot of energy, probably because of the lack of blood in general. She seems to want to sleep half the day and most of the night too.
17:02 Linda's temp is up to 102.4! We expect to get some antibiotics on board soon.

Tuesday December 16, 2003 06:55
I woke up around 4:30 this morning, but didn't drag my body out of bed till 5:45. As we left yesterday, Linda was getting a headache. She fought with that till around 4:00, when April let her have some oxycodone. Her sleep schedule was pretty messed up after yesterday's sleep-a-thon. I think she might be getting to sleep now, of course Dr. Kraemer is due any second. There is no more Chemo on her IV pole! Her leash is gone! Of course, her counts are in the basement, but that is where they are supposed to be, just now. We decided that Linda should stay in the hospital till maybe the 24th. Dr. Kraemer hinted we could maybe pry her out early, but the insurance companies don't like day passes. Her counts should be good enough by then, that she can come home. I guess we will have a different care protocol, with the Groshong, instead of the Hickman line, but I expect it is easier going in this direction, than the other way. The nurse came in just before I left, and from the numbers, it looks like Linda will be getting some platelets today. Doc must have had a meeting or something, because there was no sign of him by 8:15, when I left. Linda tells me that the doc decided save platelets for tomorrows entertainment. I guess she is having her Solutions Meeting at the hospital tonight, so I may not see her again today.

Monday December 15, 2003
Yesterday was much better than Saturday. I ended up making 4 trips over to the hospital and back. I went with coffee in the morning before church. Dr. Kraemer explained that the restrictions on where we could go were related to while Chemo was running, and to protect Linda, and the rest of the world from the chemicals, should anything strange happen. This made much more sense than what we first understood. After church, and lunch, I took Richard over to be with Mom for a while, and maybe get some homework done. I guess the homework didn't happen, as our friends Carol and Nir showed up shortly thereafter. I later came back with Brian, and took Richard home. I sent Jan over with Tristan, and She brought both kids home around dinner time. After Dinner, I went back to watch "American Beauty" with Linda. Linda hadn't done any walking yet, so we did 8 laps from her door, around the elevators and back. We got going around 20:00, and a 2 hour movie takes at least 3 hours to watch there, with all the interruptions, so I left just after 23:00, very tired.
I was a bit slow getting going this morning, so I didn't get there till 7:30, but she was sleeping anyway. Dr Kraemer came in a bit before 8:00, and everything seems fine at this point. The last bag of chemo was running, so Linda's movement shouldn't be restricted tomorrow. She hadn't slept well. She had been having trouble getting to sleep, and the saline ran out at 00:30, and the chemo ran out at 01:30, and they had to weigh her at 5:30, so she decided to go back to sleep after I left.
After a mad dash to Bothell for Richard's Archery lesson, the kids and I stopped by the hospital to see Linda. She had slept till well after noon. We had a bit of a fuss, and left around 20:00. Jan and my sister Linda had gone to a movie together. They saw "Calendar Girls", and Jan said she laughed her ass off.

Saturday December 13, 2003
Last night, Robin and I went over to walk Linda around for a while. She is supposed to do nine laps around the hospital every day, but she hadn't done any all day. She was mostly sleeping, and hanging in bed.
I called her this morning, as I was approaching R&R Espresso, to see what she wanted in her coffee, and she didn't want any! This is odd! When I got to the hospital, she was looking very pale, and said she felt that way too. She got up to go to the bathroom, and started feeling real sick, but nothing happened. While she was in there, Dr. Kraemer showed up. He said it was probably a 'mumble' reaction (I don't remember what the mumble was). He had the tech come in and take the vitals, and ended up ordering some oxygen. After a while of that she started pinking up again, but was getting sleepy. She asked how she was looking, and I told her she looked about half way back, and she said that was about how she felt. I decided to go home to help Jan get the kids organized for the day.

I came over just after noon, so we could talk to Ryan an Megan, about a possible roommate situation. After we all agreed, that it would probably work fine, so maybe after the first of the year. After they left, and Linda couldn't really look at her lunch, I was starving, so we headed out to the cafeteria to get me some food. Linda wanted to take the long way. As we were waiting for the elevator for the trip to the basement, she was looking very pale, so I suggested just getting something and going back up stairs to her room. She said she was OK, so we continued on, and I got a sandwich. Linda sat down, and was finding my potato chips tasty, but then started feeling bad. She was again white as a sheet, and she wanted something to vomit in. We ended up calling up to the floor, and Sunny came down to help us get back upstairs.
When we got her back in bed, and some oxygen into her, they checked her blood oxygen level, and found it at 92%! Her blood pressure was 72/48. Dr. Kraemer ordered 1/2 liter saline fast, 1 liter slow, and two units of packed red blood cells. He also orderd Linda restricted to the floor. I guess we are grounded. We are going to watch a video called "Ed Wood", with Jonny Depp, Linda's recent heart throb. This was a movie about "Hollywoods worst director". He did "Plan 9 from Outer Space", remember that stinker? Linda was doing much better after 1.5 units of red blood cells, and was straining at the leash of staying within sight of the nurses station, when I left a little after 22:00.

Thursday December 11, 2003
Linda tried to be asleep the whole time I was there this morning, from 7:15 to 7:45. One of the techs came in to get the morning vitals, but went away, when Linda asked her to come back later. Dr. Kraemer hadn't arrived by the time I left. I had forgotten my lunch, and my morning drugs, so home I went, before I could go to work. I hope I don't forget anything major.
When I got to the hospital, there was an old guy in Linda's Room! I asked at the nurses station, and found Linda had moved to 2-236, the very first room she had back last August. Her new number is 425-899-1239. While we were going for a walk, Paula Amell called me for directions to deliver dinner. My brother Gale, was supposed to be coming at 18:00, so I didn't stay long. He ended up driving our old VW van back, for my sister Linda, after dinner. In the middle of Gale's visit, Steve Grant called from California. We talked for a bit, then I had to let him go, so I could finish my visit with Gale. After Gale, Linda and my nephew Mike left, I went to watch the end of Finding Nemo with Jan and the kids. Jan hadn't seen it, and had a great time. I then read to the kids, and got them into bed. Next was a bit of work for one of my customers, and now I'm writing this. Life goes on...

Wednesday December 10, 2003
This morning I was in line at R&R Espresso when the alarm for my dental pre-medication went off at 7:00. When I got to the hospital, I had the two coffees in a stack, and was getting stuff out of the back, when my cup jumped off of Linda's, and exploded on the door sill of the car. Oh, well. Linda was still sleeping when I got in around 7:20, as she had been up till 1:00. I was letting her sleep, when the tech showed up for morning vitals. A few minutes later Dr. Kraemer arrived. The basic news is that there is one more dose of the Red Stuff, and that her counts hadn't dropped much since yesterday. I had to leave just after the doc did for my 8:00 dentist appointment. I went over a little after 20:30, to hang around while they gave Linda her last dose of Idarubicin (the red stuff). We went for a short walk afterwards, her standard 3 laps around the east information desk and back. She was doing OK, but not as fast as sometimes. She was feeling a bit tippy, probably because of one of the drugs they gave her, but I can't remember what it was. I left around 22:15.

Tuesday December 9, 2003
There must have been a severe gravity storm this morning, as I couldn't get out of bed, till about 6:30. I arrived, with Linda's coffee at 7:20, to find her out of bed rooting around in her purse, looking for drugs. The hospital pharmacy didn't have the exact flavor of one of her medications, that she is used to, so for today, they let her take her own. She agreed to try their flavor tomorrow. Instead of a Hickman line, they installed a Groshong, which has little valves on the inside end. When Dr. Kraemer came in, he said that for his purposes they were the same, and it didn't matter what he had installed, the Hutch would yank it and put in their own, when we go over there. The doc asked how the pain was, and Linda said it was there. The surgeon had prescribed morphine for it, but Linda didn't think it was bad enough to go there, and about 4 AM gave up trying to get anything else. I forgot to bring anything on the list of things to bring, maybe tonight.

The Crows provided a wonderful barbecued chicken dinner, with salad, and cookies. There was a thing with a self destructive plastic bag resulting in a minor soup explosion, but there were no major casualties.

After dinner, the kids and I went over to visit, watch the Peanuts special, and give Jan a break. I am going to keep Linda's phone number at the top of this page, so you can keep track of her as she moves from room to room. If you want to find Jan, starting tomorrow, she will be carrying Linda's cell phone: 206-909-3404.

Monday December 8, 2003
I delivered Linda to Evergreen this morning. We were already 10 minutes late by the time we left the driveway, but they took us anyway. There was confusion, because they had reserved a room, but because of that they thought they didn't have a room when we got there. We got that straightened out. and plugged her into 2-206. I got Scott's spare laptop plugged in, but we couldn't log in, so I left her talking to Earthlink support, and went to work at 11:30.
She just called to give me the latest. Because of other confusions, she will be getting her new Hickman line installed in her room around 16:00 today, and start the Chemo tonight.

So far, the plan looks like this: do the Chemo thing now, and get her into remission again. Take a bone marrow biopsy in a couple of weeks to see if we have successfully managed remission. Take another one two weeks later for the Hutch to examine, to see how it is growing back. From there, they decide what kind of transplant to do. They don't do many actual bone marrow transplants anymore, but they do some. This one is REALLY PERMANENT! The marrow gets KILLED OFF, and ain't coming back. If the graft doesn't take, you be hosed. Mostly they do one of several types of stem cell transplants. How they choose, I don't know. With this one, Graft Versus Host Disease (GVHD) is expected, and good. It means that the new stem cells are producing blood, and they are trying to fight off the old, hopefully weak, marrow, that is still lying around. More news later as it comes in.

The nurses are squabbling over who gets to take care of her. She would like to move down the hall to a room that EVERYBODY doesn't have to walk by. That would change who gets to take care of her tomorrow. At least it makes for a more amusing time in the hospital!

Wednesday December 3, 2003
I am currently on the phone with Premera, and XKL started on July 1, so our Transplant coverage will start on January 1. That's a $200,000 load off my back! I suspect that the transplant stuff won't start before then, because we have to get past induction first. I am getting a case manager set up. More later.
The current plan, is that Linda's sister-in-law Jan, will come up on Friday, for a couple of weeks, and then Scott and Sandy will come up to replace her around Christmas. These folks will help me keep the family going, while Linda is in the hospital. Linda and Brian will check out the PACE (Parents Active in Children's Education) program at Woodmoor Elementary School tomorrow, and maybe Robin will go with them, even though there isn't space for him there yet. Robin may end up at Hollywood Hill Elementary instead, till there is space in the PACE program. If we can get in there, we may be able to get Tristan into Polly Collins' class, which would be very cool.

Tuesday December 2, 2003
OK, We go into the hospital on Monday, where She will get a new Hickman line. We start with a similar Induction phase, but with a different cocktail, then go to transplant. We are trying to figure out exactly when the Insurance will kick in. They will certainly cover the Chemo and stuff, the question is when will they cover the transplant. My Sister Linda, the health insurance guru, will try to determine this for us. Linda, you remember my wife Linda, was going to call Premera, and get a case manager, this afternoon. So we have at least one more time around this particular mulberry bush.
We were thinking about having Brian and Robin go to public school next semester, and we may just have to send all of them, but we will have to see. There are so many things to get lined up by Monday.
My sister just left, after having gone spelunking into the Premera benefits booklet. They hadn't changed the wording, so our transplant coverage will start 6 months from when XKL started on Premera, not when Bruce Sherry Designs did. I will check with XKL tomorrow to see when they started, because I don't remember when for sure. I probably remembered what happened last summer, better in August, than I do now. The worst case at this point should be February 1.

Monday December 1, 2003
It's BAAAAAAAACK! Dr. Kraemer is talking to The Hutch to see where we want to go from here. Tomorrow we expect to find out if we do another round of Chemo, or go direct to transplant. Come back later for "Further adventures in Modern Medicine".

Friday November 28, 2003
Dr. Kraemer called early Wednesday evening to say he had no definitive answer yet, but so far the results looked suspicious! Maybe we get more info today. A couple of new church members came over for Thanksgiving dinner, Peter and Hildi, along with their two kids they are adopting. I barbecued the turkey as usual, and it was a bit late, but definitely worth the wait. It may have been the best I have done, it was certainly close.

Wednesday November 26, 2003
Yesterday, the kids and I dropped Linda off at Dr. Kraemers office, and went for a walk in Bridle Trails State Park. We came back to get her, an hour or so later, and She spent the rest of the afternoon sleeping. She woke up around 8:00, and had some dinner, and was awake till I went to bed around 12:30.
Today, She is tired. As of 4:00 we hadn't heard from the doctor yet.

Monday November 24, 2003
Friday, Linda had an appointment with Dr. Kraemer. We don't exactly know what is going on, but all her blood counts are low, so we will be doing a bone marrow biopsy tomorrow. We are a bit worried, but at least He isn't saying the AML is back. I don't know how much we will find out before Monday, it is just pins and needles time.

Tuesday, November 12, 2003
The trip back was a bit of a panic, because the ferry that they thought was fixed last night, wasn't fixed this morning. We ended up meeting Scott, Sandy and the kids at the airport, and they managed to get off on time.
We had a wonderful time! Thank you Scott and Sandy!

Monday, November 11, 2003
Linda's brother Scott Wedge gave Linda a very nice birthday present. He and his girlfriend Sandy flew up, to be with the kids, while he sent Linda and I to a bed and breakfast on San Juan Island for two nights. Last night, we had dinner at the Roche Harbor resort, and today, we didn't make it out of the room till almost Noon. We go back home tomorrow, hopefully in time to get Scott and Sandy to the airport in time for their flight back to San Jose.

Monday October 6, 2003
Linda called yesterday, and said she had just gotten up from a nap. She and everybody else had arrived, and found each other just fine. The condo, was just great, and all were having a great time.

Tuesday September 30, 2003
Linda is going to PuertoVallarta for a PlayHouse Roommate Reunion on Saturday. Things are going fine, but she had a Dr Kraemer appointment during that week, and has been having trouble deciding to visit him before she leaves, or after she gets back. Decisions, decisions.