CurtCook

Anniversaries

2011-03-11T15:56:00.000-08:00

I haven't written on this for a long time. Last Friday (March 4) would have been Curt's 68th birthday. Next Friday (March 18) is the day he died last year. On his birthday I walked with friends, played tennis and went to Baker's in Lake Oswego. We all went out to eat and then back to their house for dessert with Steve and Lynda Sprecher. We played Progressive Rummy with them and thought of Curt. I also made some contributions in his name that day.
On the 18th I am flying to Southern California with the Bakers. The Bogners will meet us there. We will spend 3 nights in Anaheim, 4 nights in San Diego and 1 night in Long Beach. We are going to Disneyland, Universal Studios, SeaWorld (on March 23 -Aaron's 12th birthday), Legoland and possibly the San Diego Zoo, Old Town or Seaport Village.
I have been keeping busy with my other activities too. This June I will be a lay representative to our church conference in Salem. July is Eagle Crest and my 50th high school reunion in Moline, IL.
We are still working on the columbarium plans at church. A church member has drawn up some up some good plans and is trying to get cost estimates. We meet again this Tuesday (15th) and hope to be able to present these plans to our congregation and the city in the next month or two. My hope now is that it can be built by the end of the summer.

Scholarship and Columbarium

2010-07-11T12:45:00.000-07:00

I received good news from the OSU Foundation that Curt's Scholarship is now fully endowed at $25,000. This will generate income for annual scholarships of at least $1,000. If the endowment grows, the scholarship can increase, or possibly generate two scholarships (unlikely). They have awarded the first scholarship to a student who will be a senior next year. According to their information - "He is a College of Engineering Dean's Scholar, and among the best and brightest in the program."
Also, the church is going to use some of Curt's church memorial money to hire a landscape architect to draw up plans for columbarium "garden" at our church. This is going to take awhile. It has to be approved by a couple committees in church, the city planners, and then by the congregation. We won't have the full plans until October. But things are moving.
I am keeping busy, but still miss Curt. I spent last week at Eagle Crest in Central Oregon with Angie's family. I am leaving for Beth's in Schaumburg, IL on Tuesday (July 13). Angie and the girls will join us the following week. Next weekend I will go with Beth, Aaron and Sam to the Wisconsin Dells, where Aaron is playing in a baseball tournament. On July 23 we will all drive to Aurelia, IA for a Stutz Family Reunion. Jef will join us there. I will return to Oregon with the Baker family from Omaha on July 26. I am looking forward to Meryl Simpson coming for a visit from England on September 2-16. On September 24 I am flying to Boston for a one week Trafalgar tour of the Fall Foliage with 2 other couples from church. I will stop at Beth's on the way home and return to Oregon on October 7. While I was at Eagle Crest, I had my living room painted and added crown molding. He also painted the hallway. I bought myself a Wii and the Bakers and Bogners gave me Wii Fit for my birthday (tomorrow). I also bought myself another TV in my bedroom.
I miss having Curt proof read this.

Update

2010-04-12T15:03:00.000-07:00

I haven't had a chance to write here lately. There is a lot of paper work to do, and I have started back in my "old routine" (tennis, bridge, Folk Club, church, etc.).
I think I mentioned trying to attach Angie's slide show. I don't think I can upload a Power Point file. There are over 200 pictures in the slide show and I don't want to upload all of them. If you were able to download the video of the service, part of the slide show is in that.
I have Curt's ashes here at home and am waiting to see what happens at our church. That could take awhile.
Angie is coming tomorrow to start going through Curt's personal things. It is hard to look at them. The whole Baker family might return next weekend.
I want to maintain all Curt's work in our yard and have arranged for lawn care. I have some things that still need to be planted though (not included in the maintenance).
I still hope to get personal thanks yous written someday!

Memorial Service

2010-03-29T20:00:00.000-07:00

It was wonderful to see all the people who came to celebrate Curt's life at his Memorial Service last Saturday (I think over 300). My house is slowly getting more quiet. Today Beth, Angie and I took Jason, Aaron, Sam and Andrea Simpson to the Portland airport. Andrea was on the same flight to Chicago where she was connecting with her flight to London. The other out-of-town relatives started to leave late Saturday afternoon. Beth and Angie will stay here until Friday. A former neighbor took pictures and video (about 1 hour) of the service. To view this you need to go to http://bit.ly/cfeF8E. I think the file is 1.5 gb. I didn't know he was going to do this, and it was a great surprise. Angie also made a slide show of old pictures that we showed before the service and at the reception/lunch in the Community Center afterwards. I might try to attach that on a later blog.

By the way we had a great time at the beach in Seaside. The weather was good and the house was big, very nice, and close to the ocean. We celebrated Aaron's birthday on March 23 by him feeding sea lions at the Aquarium, riding bumper cars and visiting Ft. Clapsop (Lewis & Clark). The next day we climbed the Astoria Column (164 steps) with spectacular views and exploring the batteries and grounds of Ft. Stevens.

Obituary

2010-03-20T21:14:00.000-07:00

I have submitted an obituary for Curt to the Corvallis Gazette Times, Quad City Times, and (Moline) Dispatch. The Dispatch already has it online at www.qconline.com. I'm not sure when it will appear in our paper.

Plans

2010-03-19T16:57:00.000-07:00

Everything is set for the service on Saturday, March 27, at 10 AM at the First United Methodist Church in Corvallis. There will be a light lunch afterwards in our Community Center. We hope you can all come.
Curt was cremated today. He has always said that is what he wanted. He even mentioned one time putting some ashes on the pitchers mound. I would like to make a contribution to our church for a Columbarium for his ashes and for other members in the future. This would be different way for you to contribute, besides the Curtis Cook Computer Science scholarship through the Oregon State University Foundation, Benton Hospice, or the Cancer Society.
I am still working on an obituary and keep getting distracted, etc.!
Thank you again for all your support!

Making Plans

2010-03-18T17:08:00.000-07:00

We have decided we would like to have Curt's memorial service at 10 AM on Saturday, March 27. This needs to be confirmed by our church (First United Methodist in Corvallis), but our minister indicated that date should be free. We want to have a light lunch afterwards in our church's Community Center. If anyone would like to make contributions, a Curtis Cook scholarship for an OSU Computer Science student has been set up with the OSU Foundation. We would also like to support our church, Benton County Hospice and the Cancer Society.
Before all this happened we had planned to rent a house in Seaside from Monday, March 22, to Thursday, March 25. We have decided this would be good time to spend together as a family. Beth is now here with the Baker family. The rest of her family is going to arrive this Saturday and probably return after the weekend of the 27th.
I don't know how to thank everyone for all the support we have received. It has been a great comfort to me and our family (as well as it was to Curt).

The End

2010-03-18T11:38:00.000-07:00

While I have a few minutes in all the hubbub, I want to share that Curt passed away last night. Curt's breathing continued to be heavy yesterday. I called Hospice a couple times and gave him some Lorazepam about 8:30 and midnight last night. I slept on a cot next to sofa and woke up about 1:30 with him flaying around (and partly on my cot) and having difficulty breathing. I called the Hospice nurse on duty (Chrissy), and she came over after 2 AM. She gave him morphine to help with the breathing. This made him flay some more, so she gave him more Lorazepam too. That did not work either, so she gave him some Valium. That seemed to do the job. She was here over 1 1/2 hours and talked about how bad this cancer is. It grows quickly and was impinging on his air supply. She thought the Valium should last about 4 hours and told us to get some sleep. I was going to get a hospital bed and caregiver today and see about sedating him. I did go back to sleep listening to his snoring, but Sue thought it got quiet around 5 AM. Jack and Sue woke me about 7:30 and said they thought Curt had passed away. They called Hospice and Linda was here right away. She removed all Hospice things and made important phone calls. The Huffords and Reistads are here and helping out. We caught Beth before she got on the airplane here. Angie packed and is driving down now. Jef is going to get Beth and bring the girls down later. We have lots of things to take care of now.
Curt was strong until the end. He walked with his walker to bathroom at 9:30 last night. On Tuesday night he played a couple rounds of Mexican Train Dominoes (with lots of help) with Gordon and me. I don't think he was in pain. He did not ask for any pain medicine, but did have the patch. Chrissy said she didn't see any furrows in his brow to indicate pain. He is finally at peace now. We hope to decide on time for a memorial service by this evening. I want to talk to the girls. I am thinking of Friday or Saturday next week (March 26 or 27).

Not Good

2010-03-17T14:11:00.000-07:00

Yesterday was a busy day. I was able to get my hair cut and go to the bank while some friends and a hospice volunteer stayed with Curt. I have someone with me at all times now. Kathleen Reistad spent the night last night.
This morning Curt woke up with heavy breathing. When Linda came, she said his breathing is like sleep apnea. She gave him some Lozarepam to relax his breathing and said to stop feeding him. It is a matter of time now. However, Curt has gotten up a couple times for the bathroom. You need to watch him - he has popped right up and tries to walk, with or without the walker. The last trip was difficult to get him back to the sofa, where he will probably be now. The Huffords just arrived and are going to spend the night. Beth is flying in at 1 tomorrow afternoon. Angie might bring her here, or else I will try to find someone to get her. Everyone else is arriving on Saturday for Spring Break week.

Another "Wrinkle"

2010-03-15T13:54:00.000-07:00

The Bakers left after supper last night. Curt wanted to go out to our porch and wave goodbye to them.
Linda had some more information for us today. She said Curt's jerking, etc., could be a side effect of the anti-nausea gel I put on his arm 1/2 hour before he eats. I am glad to discontinue that to see what happens. Another cause of the jerking could be that the tumor has reached some nerves in his brain. This could lead to a seizure. I will need to contact them right away. They are having some medicine delivered here today for them to use if this happens. So one more thing to look out for. Linda also said not to feed him if he doesn't want it. So far when I ask him, he says he is hungry.
Tom Plant called this morning to say the OSU Computer Science Department is going to offer a $1000 scholarship in Curt's name next Fall. Tom is checking on the funding for this. I think Curt wanted to give some money to the OSU Foundation for this. Tom wanted to know if Curt had any preference on who could receive it (i.e. undergraduate or graduate or whatever). I don't think Curt cares. It is very hard to understand him.

Update on Blog Today

2010-03-13T16:47:00.000-08:00

After writing a blog this morning, Dr. Foley called and came over to see Curt. I feel a little better now. His biggest concern was the bleeding, and there is none now. However, nobody can say what will happen. He thinks Curt's jerky movements, sleepiness, and mumblings could be from the pain medication. He does not want to change any of that over the weekend and will wait until Monday to see what how things go. He thinks Curt is getting close to a hospital bed and a caregiver. Dr. Foley didn't think I looked too exhausted, so we don't need a caregiver right away. If we do get a hospital bed, I would like a caregiver for overnight because we would probably put the bed in the family room. Later I had a nice visit with Tom Plant (who brought goodies from Glenda). Tom is going to talk to the EEC Department about a scholarship in Curt's name (Curt had talked to me about this). Curt was the first full-time (Assistant at time) Professor in the OSU Computer Science Department when it formed in 1972. The department has since merged with Electrical Engineering.
Jef and Tom are now working on our dryer vent that is venting into the garage, rather outside. It requires moving a shelving unit with lots of "junk" on it. Maddie and Vega are outside playing with some neighbor children. I guess they had a good time swimming.
So we continue one day at a time.

2010-03-13T11:05:00.000-08:00

Last Thursday a caregiver (Barb Smith), recommended by a friend, came to assess our situation and for us to meet her. She is busy now, but might be able to help in an emergency (depending on the time). She also knows of some other caregivers when, and if, we need one. That night we all watched the OSU-Washington tournament basketball game. It went quite late. We decided we wanted some popcorn, so I was going to make some in our microwave popper. I said that Curt usually does that, and I would have to figure it out. Curt then hopped up with his walker and came into the kitchen to tell me what to do. Of course, he can't have any.
Friday morning the Hospice Chaplain came for a visit. Late in the morning, Angie took Maddie and Vega to get their hair cut. She then got Tom and Sharon, and they all ate at McDonald's. The girls could play there too. Linda came at noon. She warned me again about what could happen to Curt, but they really don't know what will happen. Mary Beth came at 4 to give Curt a shower. She noticed more of his confusion, sleepiness, and unsteadiness, and was concerned. We received more food - homemade spaghetti sauce with uncooked noodles, fresh Parmesan cheese and tulips; a chicken casserole; homemade vegetable soup with sour cream; and fresh fruit salad and cookies. Everything has been wonderful and we don't know how to thank everybody!
Jef arrived this morning about 9:30. He did a little yard work. The past couple days have been rainy, but the sun was out a little today. Curt is very tired. I really have to rouse him to get up and eat. He still uses the walker to the bathroom, but that is getting more unsteady. It is time to rouse him again to "eat".

More Family

2010-03-11T15:38:00.000-08:00

Yesterday (Wednesday) Mike Creighton came over to be with Curt so I could walk with 4 of my friends. It felt good to walk and be outdoors. I was able to get some groceries after that. Jack Hufford arrived with my brother, Tom, and his wife, Sharon, after 1 o'clock. They were delayed at the airport in Portland because the airline had had bent the frame and broken the seat of Sharon's walker (she has Parkinson's). Linda came shortly after they arrived and later Hospice brought a walker for her to use while here. She has a problem with the seat being too high, but I think they will use it. Linda and I both notice that Curt is getting much weaker. A big concern is the blood in his mouth. It is not much now, but Linda could see the holes in the back of mouth are growing. It could possibly lead to some major bleeding. She brought sponge swabs to wet and use in his mouth. Curt had a couple other visitors during the day, and a couple people brought some supper and more "goodies".
This morning the Cravens came over to be with Curt. I didn't want Tom to take care of both Curt and Sharon. I played tennis again, but decided to get a sub for my USTA match this Sunday. Angie, Maddie and Vega and Steve Love came about 10:30. Steve was flying back to San Diego this afternoon. I heard that Curt actually sat at our dining table a little while I was gone. He has been sleeping this afternoon. It is a rainy day today. Maddie and Vega have been good, but Angie took them to the "bouncy place" to get rid of some energy. Tom went to the grocery store. I finally finished my mailing labels for the Folk Club, but I still need to work on those files later. Angie is going to make some chicken noodle soup for supper. A Caregiver is supposed to come sometime after 5 to talk to us.

2010-03-09T22:03:00.000-08:00

I forgot to mention how many ways people have found to help us. On Sunday one of our neighbors took some of our "extra" garbage and put it in another neighbor's can. We have a small regular garbage can, recycling can, and yard debris can. Lately, we have been filling all of them.
Beth was able to fly standby on an 8:20 AM flight on Monday and got home about when the boys got home from school. One of our ministers (Courtney) came at 10 on Monday to talk with Curt and about a memorial service. Nurse Linda came at noon. His blood pressure was up a little. Curt has started to use the walker around the house now. He slept all afternoon and had a few phone calls. A nurse from our Long Term Care Insurance called to do an "evaluation" over the phone. I am trying to get caught up on some Folk Club files to make mailing labels this week. It seems like I can only work in short intervals. That evening the Reistads brought another supper for us and our mutual friend, Steve Love, who had flown up from San Diego that afternoon and will return this Thursday. We hope to see him again on Thursday morning before he leaves.
This morning the Jones' came over to be with Curt while I played tennis and showered. They left after lunch. We had a couple visitors in the afternoon and phone calls all during the day (and evening). Mary Beth came about 4:30 to help him with his shower and shaving. I told her I noticed he has been having a little bloody/yellow discharge from his mouth. She looked in his mouth and said she would report it to Hospice. Linda will be coming again tomorrow. My brother and his wife are also arriving tomorrow (their plane arrives in Portland about 10:15 AM). Kathleen has arranged for more meals for us on Wednesday, Friday and Sunday. Angie, Maddie and Vega will be coming for a long weekend on Thursday too. I had leftover steak for supper tonight and need to make a grocery run tomorrow morning after walking with some friends. The Creightons' are going to be with Curt while I do that. Late Thursday afternoon, a caregiver is going to come over to see Curt and our situation. She is already working until 5 every day. I am still not sure when I might need extra help. Hospice is impressed with our Long Term Insurance coverage.
Thank you AGAIN to everyone!

Quiet Again

2010-03-07T22:35:00.000-08:00

It is hard to find a time to write the blog now. The Bakers left with Beth about 7 tonight, and Curt is now in bed. I'm not sure how the wedge is working in bed. This morning he had slid down with his feet hanging over the end of the bed about a foot. It was about 8 AM, and I was happy he had not gotten between 4 and 6 to throw up. However, soon after he threw up.
Yesterday, Curt had a good day. It was beautiful outside - sunny and in the mid 60's. The Bakers arrived around lunch time on Saturday. They brought a rhododendron and a few small plants. They cleaned up the yard (and our grill) a little, and Jef went to get peat moss, and propane and steaks for our grill. Jef then planted the plants and grilled the steaks. Carolyn and Terry Miller brought a nice poppy plant yesterday too. However, Jef noticed the flower gone this morning (we thought the poppy was "deer proof"). Brett and Sarah Reistad also stopped by. Curt was first outside supervising where to plant the "rhodie" (he sat on a walker). He then sat in our sunroom and on our front porch visiting. Beth, Angie, Jef and I played Mexican Train Dominoes that evening while Curt "rested" in his recliner.
Today Curt has been sleeping in his recliner and on the sofa all day. He moves around and "talks" at times. I will be glad to have Linda see him tomorrow.
Thank you again to everyone for your all you do. Curt (and I) appreciate your thoughts and prayers.

A Quiet Birthday

2010-03-05T14:11:00.000-08:00

Wednesday night we watched a DVD of Aaron and Sam's basketball games. Beth was happy to finally reconcile our bank statements with Quicken then too.
I was able to play tennis yesterday morning. When I came home, I was concerned when I saw Linda's car in the driveway. She had just brought Curt a couple birthday balloons! Beth showed me some things on Quicken. Curt appreciated phone calls and cards from brothers, grandkids and friends (including Meryl Simpson from England) that he received for his birthday. Reistads brought over some stroganoff, salad and rolls for supper (and a beautiful hanging plant for Curt). Curt did not want to try to eat anything (like ice cream) because of the pain in his mouth. We listened to some of the OSU-WSU basketball game (we won), opened a few presents, and visited. We reminisced about the 40 years we have spent holidays, camped together, etc. Their 2 boys are about the same ages as our 2 girls.
This morning our minister, Jim Fellers, came by to visit and talk a little about a memorial service. Our associate minister, Courtney, is coming on Monday morning to talk more about this. Curt would also like to involve Steve Sprecher. We received the forms from our Long Term Care Insurance via Fed Ex today, and I filled them out and gave them to Linda to take back to Hospice. They need to fill out information too. Our cleaning lady brought a helper today. Beth just ran to the store. Curt threw up his usual one or two times early this morning, but threw up what looked like his food right before I was going to give him his second feeding. Linda arrived shortly after and said to wait 4 hours before feeding him again. I also rubbed on some more anti-nausea medicine. His left eye is getting more "matter" in it. Linda said she noticed some swelling on that side of his face (same side as the tumor). We both noticed some slight deterioration (sleeping more, etc.). They are still not sure if it will be a continual decline, or something sudden could happen. I contacted the man about the rental house in Seaside during Spring Break. He is going to advertise it again, but check with us before actually renting it if he gets an offer. Linda brought a foam wedge for Curt to use in bed. Maybe it will help to hold things down. She also brought a chair for the shower. Mary Beth (the Hospice bathing aid) called and said she could help Curt with his shower this evening, rather than this afternoon. Curt said he would like that. The Jones are bringing some Bento food to Beth and I for supper tonight.
Angie's family is coming tomorrow afternoon. Beth will return to Portland with them Sunday evening and fly back to Chicago on Monday. My brother and his wife will arrive on Wednesday. The Huffords are going to bring them here. Angie, Maddie and Vega will be here for a long weekend the next week too (the girls do not have school on Thursday and Friday). I would like to play tennis at 9:30 on Tuesday morning and go walking on Wednesday morning between 9 and 9:30. Is there anyone who would like to sit with Curt during those times? He will probably be sleeping.
Thanks again for all your support (we can't say it enough).

A Quiet House

2010-03-03T15:22:00.001-08:00

Denny and Sandy left at 6:30 this morning for the Portland airport. It is Curt, Beth and me now. I am still not getting much done. There were several calls with Benton Hospice and our long term care insurer (Genworth), etc. Hospice does not do over night care, and some other support. Yesterday, the social worker from Hospice came and met with Beth, Angie and me. She wanted to let the girls know they are available to help them and their families too. She took our Genworth policy and contacted them. We have started the process for this care, but don't really need it right now. However, it looks like Genworth might even cover my house cleaner!
Jef's parents did visit late Sunday afternoon. Jason mowed our grass. Jef, Maddie and Vega returned to Lake Oswego after supper Sunday. Curt played Farkle (dice game) with all of us for awhile. He had a frank and emotional talk with Aaron and Sam before they went to bed that night.
Gordon Reistad took Jason, Aaron and Sam to the Portland Airport Monday morning. Denny and Sandy moved into our house then for Monday and Tuesday night. Nurse Linda came at noon to check on Curt. Monday afternoon Beth and I went to the bank and did a little shopping. Gary worked a little more on the driveway/paver stains. He and Curt walked a little outside, and Gary walked further later. Gary left for the Portland Airport about 5 PM. The rest of us ate leftovers for supper. We played a little "team" Trivial Pursuit.
Tuesday (yesterday) morning Denny and Sandy went to our Clinic for a "coumadin (sp.)" blood check for Denny. Angie did some sewing repair projects for me, and Beth keeps working on our Quicken. A Hospice aid helped Curt with a shower late in the afternoon. Denny and Sandy got our supper at McGraths.
Linda came at 2 today and commented how quiet it was. She sat down to visit awhile. She thought Curt looked good and his "vitals" were good. She said her schedule would be Monday, Wednesday and Fridays for now. Beth is out running errands.
Reistads are bringing dinner tomorrow night to celebrate Curt's birthday. I plan on playing tennis at 9:30 tomorrow morning. I think Angie, Maddie and Vega (I don't know about Jef) are coming back Saturday afternoon for the weekend. Beth will leave the first part of next week. Her family will be returning on March 20 for Spring Break. My brother, Tom, and his wife, Sharon, are making plans to fly here from Kansas from March 10-16.
So things have settled into more of a "routine" and Curt seems to be stabilized for now

More Family

2010-02-28T13:58:00.000-08:00

I usually keep a diary for myself but haven't had time lately. I hope I can remember what has happened.
Curt actually took a shower late on Friday afternoon with the help of a Hospice person. Right after that, our supper arrived with some friends.
The past 2 mornings Curt has thrown up a little the first thing. I think he has swallowed stuff coming out of the holes in his mouth during the night (he actually swallows this all the time). I rub in a couple nausea creams and then feed him later. He ate 4 times yesterday (half portions), and so far twice today (it is after 2 PM now). Right now everyone (except Curt's older brother (Denny) and wife (Sandy)) went to the sheep barns to see the baby lambs and then are going to stop at a used book sale for our library. Curt's younger brother, Gary, arrived at our house yesterday morning about 8:30 (he flew in the night before). At noon everyone (except Gary, Curt and I) went to our friends, the Reistads, for lunch. Their older son and his family came down from Seattle to see Curt. They visited Curt in the morning. It was a beautiful day - sunny and around 60 degrees. Curt sat on the porch to watch the kids play and actually walked around our street in the afternoon. He then watched Gary, Jef and Jason try to clean off some iron stains on our driveway (they had gone to a hardward store to get a something for it). Angie and Beth took the kids to a nearby playground for a little while too. We had Woodstocks pizza for supper.
Denny and Sandy arrived in Portland around 2 o'clock on Saturday. It took them a long time to get their rental car. They were going to stop at a Walgreens in Albany (we don't have one in Corvallis) to get some medicine for Denny, but they didn't have it, so they had to drive back to Salem to get it. They finally got to our house about 7:30. They left here about 10 PM to check into their hotel. Gary is staying in Albany (the motels were busy in Corvallis) and returned this morning after 9. It was after 10 before Denny and Sandy showed up.
Curt has been sleeping alot today. Jef said his parents might come for a visit from Salem later this afternoon. I think Jef, Maddie and Vega might return to Lake Oswego tonight. Gordon Reistad is going to take Jason, Aaron and Sam to the Portland airport tomorrow morning. Gary has a "red eye" flight back to Moline, IL, on Monday night. Denny and Sandy will leave early Wednesday morning for the airport. Curt will turn 67 years old on Thursday, March 4. Angie is staying part of the week. Beth will leave at the end of the week. We have all been enjoying all the goodies that have been brought. We will all have to go on a diet soon! Thank you so much for everything!

Family Time

2010-02-26T15:41:00.000-08:00

Angie, Maddie and Vega arrived after 6:30 last night. Jef brought Jason, Aaron and Sam after 10. Curt stayed up until they arrived.
Today has been a good day. Curt has not thrown up since yesterday morning. He has eaten twice (still with smaller portions). With all the accountants in the house (Jef, Jason and Beth), they have been working on our taxes all day. Curt answered questions, etc., in the morning. Linda came at noon and thought things were going well. She thinks they have found the right balance for nausea, etc. She brought some stronger pain patches, which are changed every 3 days. She will return on Monday, but there are nurses on call all weekend (and every night). Curt has been sleeping all afternoon and we are now waiting for the Hospice lady to come give him another "bath" right.
While most of us were working on taxes, Angie played games, etc., with the kids. They set up our ping pong table in the garage. There has been some rain on and off most of the day. The boys played a little basketball outside, and now everyone except Curt and me and Jef (who just returned from the grocery store) went for a walk. Three more people stopped by with food. We are fixing a ham tonight and some other friends are bringing side dishes.
We are looking forward to seeing Curt's brothers tomorrow.

Thursday

2010-02-25T16:42:00.000-08:00

Curt just had one spit up (white blob) during the night. This morning he threw up 2 or 3 times. "Nurse Linda" came at noon with more medicine for nausea and instructions. We also had some medicine delivered by Fed Ex. Curt went back to bed after all his morning visitors, but got up in the early afternoon. After more nausea medicine he finally had his first feeding today at 4:30 (half his former serving). Curt had a good "sponge bath" yesterday afternoon. I also forgot to mention that Dr. Foley had talked to Dr. Chui about Curt.
My family thinks I go into too much detail, and I am afraid I will forget someone, so I will try to generalize about visitors and gifts. Three people visited this morning and 4 this afternoon, plus the Hospice Chaplain. Some other people brought food (We got some more brownies and also got a good looking coffee cake and cinnamon rolls), flowers, e-mails and cards. Someone left some goodies on our porch too. THANK YOU for all your help and support!
We are looking forward to the arrival of our grandchildren (and their parents) tonight. We just found out that Curt's younger brother (Gary) is coming from Saturday to Monday too.

Dr. Foley

2010-02-24T14:43:00.000-08:00

Curt has done fairly well until about 5 AM this morning when he threw up. It wasn't much and was a clear fluid with a few blobs (looked like mucus). I gave him one of his medicines a couple hours later when we got up. About half hour later I started his first feeding. About half way through he spit all that up. I stopped the feeding and called Hospice. A little later "Nurse Linda" brought some nausea cream that you rub into his lower, inside arm near his wrist. You use this every 4 hours as needed. She also doubled his pain patch. She didn't stay long and is returning tomorrow. While she was here, he threw up again. The Hospice Doctor, Dr. Foley, came about 1. He talked to us and took a look at Curt. Curt also threw up when he was here. He said the tumor is probably the cause, for one reason or another. It could travel to other parts of the body or be growing into "bad" areas around his mouth or just not making him feel well. Dr. Foley also thought the substitute medicine they were using (the one we got at Rice's) was not strong enough, so he is going to change medicines. If Curt doesn't throw up for 4 hours and feels okay, I can give him another feeding of half the amount he was getting. We should continue with half these feedings as long as Curt can tolerate it. It could also be he wasn't tolerating as much as they were giving him. Dr. Foley made the comment that feeding Curt was feeding the tumor too. Sometimes your body tells you stop feeding this tumor. We will see how things progress.

One of our ministers (Courtney) came while Dr. Foley was here. If Curt is feeling okay, I might go to coffee with her in the morning. This morning Sue Creighton brought some brownies and cookies. Our neighbors, the Swansons (plus their daughter's family), came over to say goodbye before heading to Arizona for a month. Lloyd put something else on our yard for moss again today. We will miss them. A person from Hospice is coming soon to shave Curt, wash his hair, etc. I'm not sure he can have a shower yet with feeding tube.

Beth finally got out to get some groceries today. She is working on that "helping" website, and we will post it in this blog when and if it is up and running. It can be used to coordinate meals and other offers of assitance as well as anything that we might need help with. With our family in town through next Wednesday there should be lots of helpers around so we may not have any specific requests right now. Our Congregational Care group at church is providing some food for our family. Angie has been doing some work on her laptop and tried to have a conference meeting on the phone. Dr. Foley came early and interrupted that. Angie is returning to Portland tonight.

Home At Last

2010-02-23T14:07:00.000-08:00

What a whirlwind of activity the past 2 days. Yesterday they were a little concerned about some diarhea and took a sample to check. It could be from the tube feedings, the antibiotic, an infection, or bacteria. There was the usual parade of people in his room. I was glad Angie was there to go to the OHSU pharmacy and get his liquid medicine. Hospice wanted him to have a 30 day supply. We have had a little trouble with a couple of the medicines and got some "holdovers" in Corvallis. Right now I think we are covered. Curt and I were finally able to leave about 1. The OHSU Case Worker made an appointment with Hospice at 2:15 here. We asked the Reistads to be there about then and let them in (through our garage). I made good time and was home about 2:20 or 2:25. The Hospice lady with the paper work was here along with Curt's assigned personal nurse (Linda Smith). The "head" nurse came a little later and set up everything. She made a chart of the feedings (5 a day) and medicines (several at different times). I am finding it useful. It seems like you finish one feeding (it takes about 35 or 40 minutes for the food drip into his tube) and it isn't long before the next one. There have been a lot of phone calls, e-mails, and visits from friends. Gordon Reistad picked up a single dose of one of the medicines late yesterday afternoon. Then he and Kathleen returned with supper for them and me. I will have leftovers for the girls and me tonight. My neighbor (Grace Swanson) had gotten a few groceries for me. Her husband put moss killer on our yard and was going to mow it. They will be leaving for Arizona this Thursday. I had a little trouble with one of the medicines last night and called OHSU. From now on I will call one of the Hospice nurses.

Curt only got up a couple times last night. They want me to get up with him, so I take care of my business then too. We both slept pretty well. Susan Creighton picked up some more medicine for Curt this morning. Hospice pays for all the medicine, food and supplies so I don't have to worry about any of that from now on. Curt has a low dose pain patch on, but still gets some pain, so I give him some liquid oxycodone a few times a day. He keeps his eyes closed most of the time. I had a few calls from Hospice this morning. They will arrange for respite care so I can play tennis or walk or whatever. They also told us about a website called http://www.lotsahelpinghands.com/. Maybe Beth or Angie or I will have time to set that up soon. We have been getting lots of kind messages of support and offers for help. Kathleen Reistad has arranged for some food through our Congregational Care at church while we have all this company. Someone from my bridge group (Irene) just brought a frozen lasagne. The "Ladies in the Basement" (via Farl Tubb) at our church brought a beautiful lap quilt today. The Hospice Nurse (Linda) came at noon to answer questions and monitor Curt. She will return tomorrow so she can talk to Angie and Beth too. Beth arrived late this morning from Chicago and Angie brought her here about 1:30 (I think). They have done a couple loads of wash, rearranged some things, etc. I still need to figure out where to put all the supplies, etc. Angie is going to return to Lake Oswego tomorrow evening (Wednesday) and then return with Maddie and Vega on Thursday evening after their swimming lessons. Maddie and Vega do not have school on Friday. Jason, Aaron and Sam arrive about 8:15 PM on Thursday and Jef will drive them here. Curt's brother and wife (Denny and Sandy) will arrive from Atlanta on Saturday afternoon and stay at the Hilton Garden Inn in Corvallis on Saturday and Sunday nights. Jason and the boys leave Portland about 1:40 on Monday. We're not sure yet how they will get up there yet. Denny and Sandy leave Portland on Wednesday morning. They are renting a car.
Its time to flush Curt's last feeding now. I hesitate to put names in the blog, because I might forget someone. We just want to let everyone know how much we appreciate you.

Last Full Day at OHSU

2010-02-21T16:55:00.000-08:00

Yesterday afternoon one of the Oncology Doctors (I think a Resident stopped by) and answered some questions. Curt took the long loop on a walk with me, and I practiced tube feeding on him. Angie left at 6:30 to go on a Girl Scout outing with Maddie. I got back to their place after 9:30.

I rode up the elevator this morning (before 9) with Dr. Chui and his Resident doctor. He was carrying what looked like a donut box and Thermos cup of coffee. We talked a little bit about Curt. Dr Chui and a couple Resident Doctors came by Curt's room later (after 10) and answered some questions Angie (she came after 9) and I had. I was wondering who our doctor would be in Corvallis, and he said it would be the Hospice doctor who could consult with Dr. Chui if needed. He thinks the holes in his mouth are from the tumor which has spread quite extensively like fingers in his head. Curt received 2 more bags of blood today to perk him up for his discharge tomorrow (hopefully by 11). The Bregars visited before lunch. Jef brought the girls here after church, and we all ate in the cafeteria. We all took a walk with Curt after that to a lounge room with a better view of the city and mountains. Another beautiful day! When we got back to the room, the Clems came for a visit. Everyone (except Angie and me) left about 3:30. Angie and I have played some Honeymoon Bridge today. The nurses keep telling and showing me things about his care. The Case Worker (or Discharge Lady) also stopped by. She contacted Hospice in Corvallis and talked to the nurse on call. This nurse called me on my cell phone and will arrange for the Hospice admitting people to meet with us tomorrow afternoon. The nurse today is gathering some feeding supplies for me, and we will probably get more tomorrow. We are still working on getting his liquid medicine lined up.
Right now Beth is flying stand by here on Tuesday morning and Angie will bring her to Corvallis. Jason and the boys will come from Thursday to Sunday (they don't have their tickets yet). Denny (Curt's older brother) and Sandy will drive to Atlanta from their vacation in Florida and fly here next Saturday until Wednesday.
I am running out of battery on Angie's laptop and better publish this. We need to go eat too.

Bad News

2010-02-20T12:20:00.000-08:00

It was too late to finish my blog last night. They finally took Curt down for surgery about 5:15. Angie and I were able to go with him to "pre-op". He had to wait in there until he went into surgery about 7:10. The doctor called me about 7:50 to say they were done and everything went well. They were able to put in the feeding tube using a scope. The doctor said to go back to Curt's room and he should be there in about 45 minutes. Well, he didn't get back until around 11 PM. They were waiting for Curt to wake up some more. Angie and I went home shortly after.
I wanted to get here early this morning (got here about 8:15). Curt got up for the bathroom and walked a "half loop" around this floor with me. Dr. Chui and a couple other doctors came in after 10. He said the MRI was hard to read, but they could see the tumor had grown. He looked in his mouth and said there was nothing else they could do. He could also tell that Curt's speech was getting worse because of the deteriation caused by the tumor on the left side of his face. We told him we wanted to return to Corvallis and he agreed. They will make arrangements for us to meet with Hospice in Corvallis on Monday. We told Dr. Chui that Beth's family was coming at the end of March, and he said Curt would be at his best right now. Right now Beth has plans to come next Tuesday. Later Curt said "the tumor won." We are listening to the OSU-Stanford basketball game and the Huffords just arrived for a visit. Another beautiful day outside. I'm not sure I will have much more to add today.

Friday - Part 1

2010-02-19T16:21:00.000-08:00

I think this will be a long day so I am going to start a blog now. It is another beautiful, sunny day. I forgot to mention that Curt looks and feels much better. I got here after 8:30 this morning. The surgeon came in earlier to see Curt. They were supposed to operate at 1:30 and he is still waiting to go to the operating room at almost 5. He got back from his MRI last night about 10. This morning he had a little bit of a sponge bath and walked a little to "get things moving". It worked. Angie came about 11 and will stay this evening. Jef has the girls. The nurse said once he goes to surgery, he will be gone about 3 hours. Shortly after Angie arrived, a Pallative Care Nurse came. She spent a lot of time with us. She wanted to know how the cancer has progressed, etc. Then she asked what we wanted to know. Among other things, Curt said he wanted to know what the prognosis is, how it would be, etc. The PN was very caring and informative. They are still waiting for the results from the MRI. Dr. Chui is out of town today, but will be here this weekend. So I don't think we will learn the results until tomorrow. The PN said it is important that Curt feel better after getting the fluids, nourishment, blood, etc. (he does feel better). She said it is also important that it seems the cancer is still in just the head area. They are trying to figure out pain medicine dosages by how many times he uses the morphine pump (I don't think he uses it enough - he says he his pain level is always 2 or 3). They will then prescribe a long lasting pain patch or pill to use at home. She said she thinks he still has time to spend with the grandchildren and thought it would be nice if Beth came to visit while Curt is still feeling okay. If the prognosis is not good, they will refer us to hospice. She had a Resident Doctor come back later with a "pink form" called POLST. It is essentially a shortened Advanced Directive. The Sprechers (Lynda and Steve) came as she was finishing. It looks like we won't come home until Monday. Curt was awake quite a bit this morning and has been sleeping quite a bit this afternoon. I will write more later tonight.

Busy Day

2010-02-18T21:54:00.000-08:00

I didn't get to OHSU until 9 this morning. Curt said Dr. Gross had been in earlier. He told Curt they were still considering chemo. Curt had lots of things going into him - fluids, "food" & 2 more bags of blood. They also disolve his medicine and give that through his Port. They put another IV in his arm for magnesium and something else. I think they will use that for his MRI too. Later in the afternoon they started a morphine pump for pain. The Oncology doctors want to get the pain under control. They will adjust the pump dosages as Curt uses it. A Resident Oncology Doctor Lin came in the morning and asked lots of questions and examined Curt. She came back with a colleague of Dr. Chui in the afternoon and ordered the pump. They are waiting to see what they will do next. Some Resident ENT Doctors also came in a couple times and didn't say or do much. The nurses were constantly in and out check Curt's "vitals" and the tubes. Angie was there from about 9:30 to 2:50. She had to take the girls to swimming lessons at 4. Our minister and Angie's minister also stopped by. A Speech Pathologist came and decided it was too soon to work with Curt on speaking and swallowing. Curt said it hurt a little to talk. I think that was mostly because of the feeding tube down his throat. They will stop giving him liquids at midnight tonight so that he can have surgery for a feeding "peg" in his stomach tomorrow. A "Discharge" lady came to talk about feeding Curt at home through this peg. She is going to arrange with Good Samaritin Home Health in Corvallis for someone to come to our house to teach me how to do the feeding "bags". The nurse will also check on the "peg". This will taper off eventually. The Discharge lady said that "Good Sam" doesn't come to the home after 1 PM. So when we leave here we will have to be home by then. That could delay Curt's discharge. We were hoping to leave on Saturday, but are not sure. An Occupational Therapist also came. She was impressed by Curt's strength and how handicap friendly our house is, and said she will "sign off" on him. She wants him to sit down while showering and dressing. Jef came after he got off work. We walked with Curt on a loop around the rooms in this section. The OT said he needs to get up or he might get pneumonia. He also gets up to use the bathroom. His bed has to be on an angle so that the feeding tube will keep the food going down. Jef and I got something in the cafeteria (the food is pretty good) and brought it back to the room to eat. Curt tried to get some rest. The night nurse (they do 12 hour shifts) said they would only do his "vitals" every 4 hours now. They also increased the flow of the "food". They have to see how he will tolerate it. Curt can pick his schedule for eating at home. Some people have the pump going for 12 hours over night and then have day off. I'm not sure about that. They took Curt for an x-ray about 5 o'clock so that he would be ready for his MRI (they have never done this before). They finally came to get him at 8PM for the MRI. I came home because this could take a little while. I hope to get there earlier tomorrow to what is going on.

Change of Plans

2010-02-17T19:33:00.000-08:00

We had a call on our cell phone last night saying they could not get the medicine needed for his shot this morning so we did not need to come in. Curt was really complaining about his mouth and said there was some blood. I thought I noticed some blood on the corner of his mouth. I got a flash light and looked way in the back on the left side. I saw a hole in his mouth, some dried blood near his wisdom tooth, and a white spot. I sent an e-mail to Dr. Gross and he answered right back that he was in surgery all day today, but he would see if their Nurse Practioner could see him. They called this morning and said he could come in at 2. After Curt ate his Cream of Rice and went upstairs, he acted like his was going to collapse. I was a little nervous about that and called our friends, the Huffords. They came over within an hour and stayed until we left for OHSU. Angie met us at there. We saw the lady NP who seemed very competent. She asked some questions and looked in his mouth. She was quite concerned and had us look too. There were actually 3 holes. She thought it could be "osteoradio-necrosis" (deteriorating bone from radiation) and a tumor there. You could see some white in one of the holes, which she said was the tumor. She talked to Dr. Gross and they said Curt needed to be hospitalized right away to get fluids and nourishment. Hopefully he would get enough fluids so they can do an MRI on that tumor by his mouth. She didn't think the misery of more chemo would be worth it, but that is Curt's decision. So right now Curt is in the hospital here with lots of people coming and going doing tests, etc. The nurse was able to access his Port right away to start the fluids and take blood samples. Another nurse tried to put the feeding tube through his nose and Curt gagged and gasped for air. She quit and a Resident Doctor came later with a "snake camera" and some numbing substance to help the other nurse. It went down much easier. An x-ray person just came in to make sure the tube was going to the right place. Now they will start nourishment and maybe some other things. They gave him some pain medicine through his Port. A couple Resident Doctors came in earlier to tell us the plan. They will keep the fluids and feeding tube going through his nose until Friday. Then a surgeon will implant a feeding tube in his stomach. They need to watch where they "harvested" his stomach muscle for his operation in 2007. He will need to wait at least a day to see if that is working okay. Then he can return to Corvallis and I will learn how to use the feeding tube. We hope that will be Saturday. There was a discrepancy with his weight. At the ENT office they said he weighed about 139 lbs., but in the hospital they said he weighed about 143 lbs. (which is probably closer). The NP canceled our appointment with Dr. Chui tomorrow morning. Angie went home after 7 and I will go back soon to Angie's and return tomorrow morning. Hopefully Curt will start to feel better.

Weight Loss

2010-02-16T14:52:00.000-08:00

When Curt went for his MRI on Friday, they could not do the contrast dye portion because his CRE was up (an indication of kidney malfunction). Because he was dehydrated, they had him get another bag of fluid. We had hoped to leave for the coast in the early or middle afternoon, but didn't leave until after 5. Jef drove our car with Curt and I rode with Angie and the girls. We took Hwy. 30 and got to Seaside about 8. We had the best unit (a penthouse on the corner of the 8th floor) with beautiful views of the beach and ocean. It was a little rainy on Angie's birthday (Saturday) and beautiful and on Sunday and Monday. The girls had a great time on the beach and swimming in the heated outdoor pool. Curt did not do well. He ate and drank very little and was in bed or resting most of the time. Most of his pain was in his tongue. I called a doctor on call at OHSU on Sunday, and she recommended Curt be checked out when we returned to Corvallis on Monday. When we went to our car at WorldMark to leave, Curt rode in a wheelchair (it was a long walk). I took him straight to our Immediate Care in Corvallis on our return around 2 PM. He weighed 143.5 lbs. (a loss of about 4 pounds over the weekend). His blood pressure was really low (106/70 lying down and 98/64 standing). The OHSU doctor implied Curt might need more hydration. The Clinic doctor also thought he needed hydration, so Curt had another bag of fluid. It was a slow drip and took over 2 hours. The Clinic doctor said this was just a temporary fix, and he should probably go to the hospital for intravenous feeding and fluid if he continues like this. Last night we sent an e-mail to Drs. Chui and Gross. I will print Dr. Gross' reply this morning.

"Sorry to hear that you have been having so much pain. It sounds like you have been quite dehydrated. I think we should seriously consider a feeding tube for you. We can discuss more but I am concerned about your trouble eating and drinking.
Unfortunately, there is no easy remedy for this [tongue pain] because it is almost certainly a referred pain. You feel it in your tongue even though the source of the pain is really at the skull base [where the tumor is]. Numbing the tongue probably wouldn't touch the pain."

We finally got ahold of a nurse with Dr. Chui this afternoon. She said he agreed with the feeding tube and would like to have the contrasting MRI. Curt is scheduled for a shot at OHSU at 8:30 AM on Wednesday. This contains an element (iron?) that is okay with kidney failure. It takes 24 hours for it to get in his system. Evidently this is an unusual situation for "parotid tumors". He will then have the MRI at 8:30 AM on Thursday and see Dr. Chui at 10:30. We are headed to Angie's later this afternoon to spend the night (8:30 AM is pretty early to drive from Corvallis).
Curt did eat his usual Cream of Rice cereal this morning and has actually drunk one Ensure so far today.

Dr. Chui (Good News)

2010-01-28T18:41:00.000-08:00

We got to OHSU before 10 this morning. They did his blood work first. He weighed 153 lbs. and his BP was 135/85 (about normal for him). Dr. Chui (no Resident doctor today) said the ultrasound of his kidneys showed they were okay. However, his CRE and BUN were still elevated - but less than on Monday. His Red Cells were actually up a little but not quite in the "normal" range yet. They were good enough that he didn't need another transfusion. Dr. Chui asked Curt how he felt (pretty good, although he still takes Excedrin for his headaches) and decided to let him have a reduced dose of Cisplatin (it is hardest on the kidneys). Dr. Chui thinks Curt's problems with the CRE and BUN are because he does not get enough fluids. He also wants him to eat more. We mentioned Curt's doctor at the Corvallis Clinic thought Curt should take some medicine to stimulate his appetite. Dr. Chui thought it was worth a try and gave Curt a prescription. The nurse who took his blood sample did not have trouble with his Port, but 90 minutes later the fusion nurse had trouble and had to use some TPA to open it. While waiting, he got a massage of his feet, hands and shoulders from a volunteer masseuse. It was another nice day. There was fog in the morning until we got past Salem and then a ceiling of clouds the rest of the day with some sun peeking through. We had a great view of Mt. Hood from Curt's station at OHSUand didn't get out of there until almost 4. On February 12 Curt will have another MRI. We will head to the coast with the Bakers after that for the long weekend. On February 18 Curt will see Dr. Chui for the results of the MRI and possibly another treatment. Dr. Chui said to just schedule one more possible treatment after that.
I will post this now and Curt can edit it after the OSU-USC basketball game (on TV) is over. OSU won!

Dr. Chui (kidney problem)

2010-01-25T19:33:00.000-08:00

It wasn't bad driving to and from Portland today. The sun was out and there were a few sprinkles this morning, and no moisture coming home. We got to OHSU after 10. Curt has lost about 5 lbs. (weighs 149.9 lbs.) in 3 weeks and his BP was 124/80. He saw another Resident Doctor first and Curt told her all his problems. One of the biggest concerns is the headaches he is getting. He needs to take Excedrin about every 4 or 5 hours and sometimes takes some Oxycodone. They asked how painful these were compared to before he started the chemo (they seem to be less, but Curt tries to take something when he feels the pain coming on). The other big concern is his weight loss. His sore tongue and cheek, with a lack of chewing, are major factors. He only eats liquids or very soft foods. I have used my new hand blender a few times for him. The numbness in his hands and feet are about the same. We have been having nice weather lately (not much rain and in the 50's), and he has taken several walks. His ear is bothering him again. It feels plugged and sometimes has pain. We have been putting in some drops again, and he thinks it helps. He is going to run out of that pretty soon. Dr. Chui thought Curt looked pretty good in general and his eye is not so bad now. Dr. Chui told Curt to double the antidepressant he is taking. I guess it is good to gradually work into the dose he might need. Because of the pain and Curt's weight loss, Dr. Chui wanted to do one more treatment today and then have a MRI in a couple weeks.
When Curt went in for the treatment, they had trouble again with his Port. They finally took a blood sample from his arm. One good thing is that the red cell count was okay (it was a little low). However, it showed his kidneys were not functioning right to get rid of the BUN (Blood Urea Nitrogen) and CRE (Creatinine). This can be caused by certain medications (including chemotherapy) and dehydration. Curt does need to drink more. So Dr. Chui did not want to proceed with the chemo today and wanted Curt to get an ultrasound of his kidneys after getting 2 big bags of fluids. It took a couple nurses almost 2 hours to finally draw some blood through his Port (they finally put in something to dissolve any obstructions and had to wait for that to work). Then it took at least an hour for each bag of fluid. Our friends, the Huffords, stopped by to visit for a little while. The ultrasound was afterwards in the same building. It was almost 5 o'clock before we got out of there. Dr. Chui wants to see Curt again this Thursday for another blood test, go over the ultrasound, and possibly have the chemotherapy. If this chemotherapy is not working, there is only about one other kind to try, and it has very bad side effects on your skin. So we wait to see what happens next.

Dr. Lee (for mouth)

2010-01-12T15:23:00.000-08:00

Curt saw Dr. Lee this afternoon to see if he could do anything for his sore mouth. Dr. Lee was concerned about Curt's weight loss (he weighed almost 152 lbs. and his BP was 130/90) and his general all around weakness. He said Curt should be drinking 3 Ensures (or Boost or whatever) a day and eat liquids or soft food. He did prescribe a numbing gel to put on his tongue. If his appetite does not improve in a month (he wants to see him again then), he will give him something to stimulate his appetite.
He also said Curt should try to "exercise" (i.e., some walking) every day. Curt stumbled a little when he stood up, and Dr. Lee could feel the atrophy in his leg and hand muscles. He thinks Curt should maybe use a walker. Curt doesn't want to do that. I will walk with him. If he hasn't improved in a month, Dr. Lee will prescribe physical therapy. He said it is important to keep up his strength with the chemotherapy. Dr. Lee said OHSU has been sending him updates about Curt and mentioned the CT scan that did not show any cancer. However, I think the cancer might be in a different place in his head.
Dr. Lee also had Curt get the H1N1 vaccine. I shouldn't have gone along, because I got one too!
(I did need to go though, because Curt doesn't drive anymore.) After seeing the doctor, we went to Borders and BiMart. When Curt got home, he drank an Ensure and is now resting.

Blood Transfusion #2 & Update

2010-01-09T10:49:00.000-08:00

On Tuesday, January 5th, Curt had his second blood transfusion for red cells. The nurse tried on and off for about 1 1/2 hours to access his Port and finally gave up and put an IV in his arm. He had 2 units of blood that took almost 2 hours each. When he began, his BP was around 106/67. They check it periodically and it was around 114/75. Toward the end, it was 85/54. The nurse had him walk around and it went back up to 116/74 (the final reading). After the transfusion, he got his "booster" shot for white cells. We went to OHSU after 9 AM and left around 2:30 PM. I went to bridge that night.
On Wednesday some Portland and Corvallis friends came over about 10 AM and helped put our Christmas boxes, suitcases, etc., up in our storage area in the garage. They also did some yard work and brought lunch. Curt got up about 11 AM, but got sleepy again about 3 PM. They left then. Curt is still able to do most things (except heavy lifting) a little at a time.
Yesterday afternoon Curt went with me shopping (got Turbo Tax and Quicken, among other things) while the cleaning lady was here (my Christmas present). Curt is still pretty tired and weak (a shower really wears him out) and sleeps a lot. He feels light headed at times. However, his nose does not run like it did. He is taking some Excedrin (not Oxycodone) for a little pain. Eating is still a problem with his sore tongue and trouble chewing and nausea. So there is a slight improvement, but we need to wait to our next visit to Dr. Chui on January 25 to see how things are going.
We are looking forward to the Bogner family coming during Spring Break. We hope to spend 3 nights with them and Bakers at Seaside on the coast. We also plan to spend President's Weekend in February at Seaside with Bakers. Angie's birthday is February 13.

Treatment #9

2010-01-04T16:44:00.000-08:00

Another long day at OHSU. We drove up this morning for his 9:30 appointment with Dr. Chui. Curt weighed about 155 lbs. (lost about 5 pounds). As usual, he saw a Resident Doctor (they are always different) first. Dr. Chui wore a mask, because he had been sick. I was actually encouraged with what Dr. Chui had to say. He looked at the CT scan from Illinois and thought it looked good. It showed what had been done during his past surgeries around his sinuses, but didn't show any new tumors or growth. He said the discharge was to be expected from his sinuses, and he needed to watch for infection there. The odor was probably from old gunk that has been accumulating there. The lack of feeling and weakness in his feet, and somewhat in his hands, is a side effect of the Taxotere chemo. Dr. Chui decided to skip the Taxotere and just do the Cisplatin this time. He thinks the Taxotere might have been doing the best job on the cancer, but we will wait 3 weeks to see how the Cisplatin is doing. At that time they will decide on what to do for the next treatment (if any). Dr. Chui really thinks the chemo is helping. Another major problem is the pain around his left ear and jaw. Dr. Chui said that is to be expected with a "tumor eating away at the base of your skull." Curt has switched to Oxycodone for that and hopes he doesn't get too constipated. Another major problem is his tiredness and lack of energy. The nurse had a hard time opening up his Port to draw blood. We had to wait about an hour for something to dissolve and open it up. The first blood he drew was not conclusive, so he did another draw. This was a better draw. It showed his kidneys were borderline and his red cell count was way down again. So we are returning at 9 AM tomorrow for another blood transfusion. This time we came prepared to spend the night at Angie's. He can get his followup shot here after that. I thought we would be out of there sooner, but it took a long time to get the Cisplatin started, and he also had 2 big bags of saline fluid. It was after 4 before we left. I am worried that he is not eating enough. It is hard for him to chew, and because he has no feeling, he often bites his tongue. He did eat breakfast at home, but has only had an Ensure, a little soft drink, and a piece of candy so far today. We got to Bakers' after 4:30, and he immediately went to lie down (after trying to sleep in the lounge chair the whole day at OHSU). Sure hope the transfusion does better this time! Curt is also going to start to take an antidepressant. He has expressed some emotional these past few weeks. Dr. Chui said that is to be expected too.

Back Home

2009-12-29T10:46:00.000-08:00

We had a nice Christmas with the Bogners. On Christmas Eve we went to the 5 o'clock church service. Afterwards the boys opened their presents to each other before eating. After opening presents Christmas morning, we went to Jason's parents. Curt was able to rest before going there. Jason's Grandmother and Uncle's family were also there (13 total). They opened presents, played games and had a nice meal (including Swedish potato sausage). The weather that day reminded us of Oregon (rain and around 40 degrees). However, on our way home that evening, it started to snow and the next day Schaumburg got about a foot of snow. Curt's younger brother (Gary and Linda) managed to drive back up from the Quad Cities that day (Saturday), so we had another nice visit with them. They returned to the Quad Cities the next day. Curt didn't go to church on Sunday. Beth and I did some exchanging, and Jason's parents came for another visit in the afternoon. Beth got us to the airport after 8:30 on Monday for our 10:40 flight back to Oregon. We checked our bags relatively quickly and got in the long security line. Curt started to feel weak and thought he might collapse. I managed to get the attention of a TSA guy who came right over and helped him to a chair near the scanners. Curt had one last Ensure in his bag and drank that and took an Excedrin. We then waited about half an hour for a wheelchair. We had to go under the tunnel to get to our gate in the C Concourse. We didn't have to wait long to board the plane. We took off a few minutes late, but were about 25 minutes early to Portland. Curt ate a little there before we caught the shuttle to Corvallis. It was sunny in Portland, but we ran into fog in Salem for the rest of the way home. After getting a few groceries, we were home before 6. We both slept well last night. I played tennis at 8:15 this morning and got a few more groceries.
Curt is still bothered by his runny nose and circulation in his legs, etc. His next appointment is Monday, January 4. We are planning to go to the Bakers for New Years Eve and Day to celebrate with them.

Stinky Snot

2009-12-23T17:45:00.000-08:00

We just spent about 6 1/2 hours in Alexian Brothers Hospital Emergency Room in Hoffman Estates. Curt has been having a lot of discharge (snot) that is thick and yellow and really stinks. This happens especially when he lies down. Yesterday he called OHSU and they said as long as he didn't have a temperature or extreme pain, it should be okay. However, the nurse said she didn't think it was a side effect of the chemo. We were concerned that he could have an infection in his sinuses, or somewhere else. Beth and the boys took us there about 10:30 AM and stayed until he finally saw a doctor after a couple hours (there were a couple computers in the children's waiting area). Beth got me something to eat before leaving. I brought an Ensure for Curt. We thought they were going to do a blood test, but they did do a CT scan about 1:45. They gave us a CD with the scan and a written report. The doctor came back after 2:30. She said the scan was hard to read because of all the things that had happened in Curt's head, and they didn't have anything to compare it with. She wanted to talk to Dr. Chui at OHSU. She thought there could be a "fissure" or something else that could be draining dead cells from the tumor or other cells that would stink. Beth left the boys with a neighbor and came back about 4. Finally after 4:30 the doctor said they hadn't heard from OHSU, but to be safe, she would prescribe an antibiotic. If his temperature rises above 100 or he has extreme pain, he should return. Then as we were leaving, they finally heard from OHSU. They said the same thing she said. We finally got out of there about 5. It was snowing an icy snow. We stopped at Walgreens on the way home to leave his prescription. When we got home, Jason was busy with the snowblower after mixing up and putting in the oven the meatloaf I was going to fix for supper. He took Curt back to get the medicine. It does seem like Curt is feeling a little better. Right now he is playing Royal Rummy.

Schaumburg, Illinois

2009-12-21T19:35:00.000-08:00

We had a good trip here on the limousine and airplane. Our plane was actually about one half hour early. Jason was there to pick us up. Curt slept most of the way and went to bed soon after we arrived at their house (after 8:30 PM). Both of his brothers drove from Moline to see us on Friday and Saturday. Curt was not up to going out on Friday, so we brought food in. Curt had to go lie down a couple times. Aaron went to a pre-party before a 5th Grade Dance that night. We did go out to lunch on Saturday with Denny and Sandy before they returned to Moline. At 6 that night we went to watch Sam in his Free Throw contest (he made 8 of 25). Aaron was at a birthday party at that time. Then Beth and Jason had their church group (5 other couples) over at 7:30 for game night. Curt went to bed when the boys did, but I played Progressive Rummy with the group. Sunday we all went to church. Jason took the boys sliding in the afternoon (there has been snow since we arrived), and the rest of us stayed home. Today Curt had a nice visit with his former catcher from grade school through high school. He also drove from Moline (about 2 1/2 hour drive) to see Curt. We went out to lunch with him and he visited here for awhile. Curt then rested while the boys went to a birthday party and Beth and I shopped this afternoon.
Curt has been disappointed that he has not had more energy (still rests a lot) and still gets a little pain by his ear (taking a couple Excedrin a day). He has also had a lot of discharge - mostly through his nose. He still complains about the "numbness" in his feet. He is not eating that well either.
I got a cold the day before we left (last Wednesday), but it is better now. However, I have been sleeping in Sam's room the past couple nights because of my snoring. Sam is sleeping in Aaron's room.
We are looking forward to watching the Beavers in the Las Vegas Bowl tomorrow night. We will go to the 5 o'clock church service on Christmas Eve and then come home. On Christmas Day we will go to Jason's parents'.
Merry Christmas!

Blood Transfusion

2009-12-15T19:09:00.001-08:00

It seemed like another long day today. We left here after 8 and were a few minutes late to his 10 o'clock appointment. I don't drive as fast in the rain, and we ran into a traffic jam in Portland. They had trouble drawing blood again from his Port, but it didn't matter for this. He got a little clear fluid before starting the 2 units of blood. The transfusion was just like a chemo treatment - just added blood and did not remove anything. It was almost 3 PM when it finished. His BP was low before they started (117 over 70 something). After the first unit, it went up to 134/80. The nurse slowed up the process a little on the second unit. She said it was probably low due to the lack of red blood cells. He weighed about 163 lbs. after getting all these fluids the past 2 days. The nurse said it will take a couple days for him to perk up. After the tranfusion, he got his shot to buiild up his white blood cells. When we got home, Curt took an Excedrin for "a little bit" of pain. We are looking forward to riding in a limousine to the airport this Thursday and heading to Chicago.

Treatment #8

2009-12-14T21:04:00.002-08:00

Today was a long day. We left after 7:30 AM and got home after 7:30 PM. They had a little mix up and got Curt started later than 9:30. They took his "vitals" before seeing the Nurse Practioner (he usually sees the doctor or NP first). He weighed about 157.6 lbs. (4 pounds less than last week), his BP was 121/77, and his temperature was 99.3 (slightly higher). Maybe that is why the NP asked us if we were visiting a big city with hospitals available in case of infection or something. She told Curt to wash his hands a lot and move away from anyone coughing or sneezing on the airplane. He could wear a mask if he wants (he doesn't want). We told the NP about Curt's tiredness (he has been sleeping A LOT) and doesn't have any energy. The blood test showed he is severely anemic (his "RBC" and "HGB" were half of what they should be), but the white count and other things were good enough for him to have the treatment. The good news is that Curt took an oxycodone at 7:00 am before we left (he had been alternating between oxycodone and Excedrin every 4-6 hours) and has not had to take another oxycodone or excedrin all day. Tomorrow we are returning at 10 AM for him to have a blood transfusion (2 units). Hopefully this transfusion will do as good a job of raising the red cell count (and restoring energy) as the treatment did for his pain. I guess the transfusion takes about 4 hours. After that he will get his followup shot for the white blood cell count there. We didn't get out of OHSU until 4 PM. We then stopped by the Bakers for about half an hour and ate supper in Albany. It was a nice drive up in the morning, but it was raining hard driving home in the dark. We are cancelling our trip to California at the end of January (for now). They have scheduled another treatment on January 4 and possibly another on January 25. Curt might have another MRI around this time depending on how he feels.

2009-12-14T21:04:00.001-08:00

Dr. Chui

2009-12-07T16:06:00.000-08:00

Curt weighed about 161 lbs. and his bp was 134/84 today. He saw another Resident Doctor before seeing Dr. Chui. Curt told them about the pain in his ear (we think they already knew about that) and his mouth (caused partly by his difficulty with chewing and biting his tongue) , his tiredness, and his tingly feet and ankles. They recommended he take the oxycodone for the pain (the pain is not much better with the drops). The nurse recommended another over-the-counter stool softener/laxative to take for his oxycodone side effects. The tiredness is from the chemo and tumor. The tingly feet and ankles are also from the chemo (it can destroy muscles, and his kidneys might not be taking care of potasium and magnesium that could cause this feeling - Dr. Chui will watch this, because this could also lead to his heart stopping). Dr. Chui also thought Curt's eye was drooping more (I think so too) and wanted to restart the chemotherapy ASAP. It will be the same thing (taxotere and cisplatin). They didn't have time until next Monday, December 14. Right after Dr. Chui said he wanted to start ASAP, he left the room. Shortly after a nurse came in to help us schedule it. We had a few more questions to ask, but asked the nurse some and will ask about going to California at the end of January (one of the 3 week treatments would be right in the middle of our week at San Diego) next week. We asked about going to Illinois from December 17-28 and didn't get a direct answer. However, we are assuming that will be okay. We also don't know for sure how many more treatments he will receive (that will probably depend on several things), but they did say they would be 3 weeks apart. Hopefully we will find out more about that next week too and these treatments will help!

Ear Pain and Dr. Gross

2009-11-24T19:59:00.000-08:00

Curt has been having pain and clogging of his left ear. He e-mailed Dr. Gross a week ago Sunday about a thick yellow drainage. Dr. Gross said it was probably from the tumor, but to let him know if he had a temperature (for an infection). For the past several days it had been getting more painful and bothering Curt more (he was taking Excedrin everyday for the pain), so he e-mailed Dr. Gross again last Sunday and told him we were coming to Lake Oswego from Wednesday to Friday. Dr. Gross said he could see Curt on Tuesday, so Curt called for an appointment. He saw Dr. Gross' new Resident doctor first this afternoon. The Resident couldn't see very far into his ear and had to clean it out first. He commented about his crooked ear canal. It took him a little while to get it cleaned out so he could see the drainage tube. He said the tube looked good, but there was "debris". They prescribed ear drops ($83 worth for 3 weeks - 4 drops twice a day). The drops have both a steroid for swelling and an antibiotic. They also looked with their "snake" in his nose and saw a polyp that didn't seem to bother them. Dr. Gross also looked at his MRI and its results. He thinks the ear pain is from the tumor. The tumor is not just one lump. It branches out. Some of it has been destroyed, but not all of it. The tumor is deep inside where his ear is. He also said there are other chemo treatments that might work. It will be up to Dr. Chui to decide what to do (Curt sees him on December 7). Dr. Gross said the MRI can't tell you everything. They also have to go on how Curt feels, etc.

Good or Bad News?

2009-11-09T15:18:00.000-08:00

Curt saw Dr. Chui this morning. His weight was good (161.1 lbs.), but his blood pressure was up a little (143/82). He first saw another Resident Doctor who asked questions and examined him (briefly). Curt told her all his "problems". One of his two biggest complaints are runny nose (that causes congestion - especially at night), ear, & eye (with a little pain above his eye a couple times where he took some Excedrin, and some blurry eyes for reading). The second biggest complaint is tiredness. He needs to rest while doing most things, like mowing the grass, and then take a nap afterwards. Some of his other complaints are tingling in his ankles and feet; feeling cold at times; nausea that lasted longer; and some minor memory problems. All of the symptoms can be from the chemotherapy or cancer. Dr. Chui said he didn't know what to say about the MRI. It showed some "enhancement" that could be caused by swelling from the treatments or by more cancer. We believe he said the "enhancement" is an enlargement of nerves around the large tumor that was at the base of his skull. One good thing is that this tumor is about the same or smaller. Dr. Chui said the only way he could tell if the enhancement was more cancer would be how Curt felt and looked. He thought Curt looked pretty good (especially after receiving doses 30% HIGHER than normal dosages). Dr. Chui said Curt was tough and a fighter. The Resident doctor wondered how much daytime Curt spent "resting". We thought it was over 50% of his time. He said Curt could drop the treatments for 4 weeks and then return to see Dr. Chui. If Curt continued to feel better, then the treatments were probably working. If Curt felt worse or had more pain, then it is possible the cancer has returned or spread. He won't have another MRI unless Dr. Chui thinks he needs one after his visit on Monday, December 7. If there is more cancer, we would have to discuss what to do next. He could possibly try another treatment, but it wouldn't be as good and could cause worse symptoms. He thought we should go to Illinois from December 17-28, and he could work around it.
Last Thursday is when Curt had his MRI at OHSU. Afterwards, we picked up Vega at school about 2:30. She was at school while Angie was doing some work from home. Later we celebrated Vega's 5th birthday at Build-a-Bear and McDonalds in the Mall with them and then went back to their place to open some presents. On Sunday we were going to go up to Vega's party at the Little Gym at 12:30. However, Vega had a temperature (102), so they postponed the party until next Sunday. Jef was cooking a big a turkey on the grill for his family and us after the party. So we drove up about 4:30. Jef's parents were also there. We tried to keep our distance from Vega. She feels better for awhile after some Tylenol and eating. When Angie e-mailed Vega's pre-kindergarten teacher about school today, the teacher e-mailed back that she only had 4 of her 10 students. Curt was able to get the seasonal flu vaccine last Friday. There isn't any H1N1 vaccine available around here yet.
So we wait and see how Curt feels during the next few weeks.

Treatment #7

2009-10-19T19:43:00.000-07:00

We spent last night at the Bakers because Curt had to see the Nurse Practioner at 8 AM this morning. He is gaining weight (162.6 lbs.)! He thought maybe his jeans contributed to some of the weight, but noticed they were feeling tighter. Curt mentioned how much his runny nose bothers him. His eye is also watering more and affecting his reading some. I noticed water running out of his ear the other day too and his ear sometimes feels clogged. The NP said these can all be side effects of the chemo. She also mentioned some of his eyelashes and nose hairs have probably disappeared and contributed to the problem. She recommended he take both Benadryl (which he has been taking every night) and either Claritin or Zyrtec. All of this makes him lightheaded at times too. Curt also told her how tired he has been feeling. The only tennis he played since his last treatment was with my group once. He also had to rest between mowing the front and back yards and takes naps almost every day. Walking doesn't seem to bother him as much.
The NP thought since the symptoms seem to be increasing, he should have another MRI before his next scheduled treatment on November 9. So they scheduled one on November 5 (Vega's 5th birthday). He will then see Dr. Chui on November 9th too. She hinted it might be time to take a break on the chemo. She also said he could get flu shots (not nose sprays) just before his next treatment. This will give his blood counts time to build up again.
The blood tests were all about the same as last time. The kidney portion was almost exactly the same. Curt has been working on drinking more fluids. So they went ahead with this treatment. We were out of there a little after 1 and stopped several places for shopping on the way home. We didn't get home until after 6.

Dr. Chui & Treatment #6

2009-09-28T20:12:00.000-07:00

Curt weighed about same (about 157 lbs.) and blood pressure was good too. He saw another Resident Doctor (who was shorter than me) before seeing Dr. Chui. She could barely see in his ear and said there was still a little wax there. She questioned and briefly examined him and then went out to confer with Dr. Chui. Dr. Chui said they could see where more of the tumor had died even though the size had not changed much from the last MRI. Eventually the dead parts will be absorbed. Evidently there is some fluid that builds up from this that could become infected. Curt would feel intense pain from this and Dr. Gross might have to drain it. So Curt needs to watch for pain, redness, and possibly a temperature. Since the chemo seems to be working, Dr. Chui thinks Curt should continue (they actually scheduled 4 more treatments! After the next one in 3 weeks, they will probably schedule another MRI. They also want to see how Curt is doing. Curt told him this last treatment was probably the hardest. He never got back to his regular tennis, but he did walk, ride his bike, etc. He has felt light-headed quite a bit. The doctors thought Curt needs more fluids. This was proven when the nurse did his blood test before starting the treatment. The blood test showed his kidneys were not working like they should. She said Curt was "a quart low". She told him to drink at least a quart of water a day and try to work up to 2 quarts. If he mixes up something (like Crystal Light) and puts it in the refrigerator every day, it will help him keep track of the fluids. He needs to flush out all these chemicals and dead stuff from his kidneys! We doubt they will actually do 4 more treatments, but they want to get rid of as much of the cancer as possible. Dr. Chui said they can't get rid of all of it, but the more that is gone, the longer it should be before it returns. They will keep a close eye on it after the treatments ends. BTW my root canal has gone well so far.

Dr. Gross & MRI

2009-09-22T21:52:00.000-07:00

Another long day at OHSU. Curt saw a Resident ENT Doctor and Dr. Gross after 10:30 this morning. Curt told them about his left ear feeling plugged (the canal is fouled up from his surgery 2 years ago) and his very runny nose (especially at night). They had him get his hearing tested before he went for his MRI. While waiting for the MRI, there was an emergency that postponed it from 12:30 to 2:30. They gave Curt a lunch voucher and pager. I had already gotten something to eat at one of their deli's and ate while waiting. I went with Curt to the cafeteria where he got something to eat. After that we stopped briefly to see Judi French from our church. She had been admitted the night before for acute leukemia and was getting ready for a bone marrow (sample?). Curt's MRI took about 1 1/2 hours and we returned to Dr. Gross' office. The hearing test showed that his right ear was normal "for someone his age". The left ear showed hearing loss due to fluid in the ear. The Resident Doctor removed quite a bit of dried wax from that ear and implanted a tube for drainage (just like children get). This tube will probably work its way out in about a year. We got a prescription in Corvallis for ear drops to put in for 3 days to keep away any infection. He thinks he can hear better even with the cotton in his ear now. They recommended he try taking Benadryl for his nose. Dr. Gross took a quick look at the MRI and could not see much difference from the previous one in July. He said they will need to take measurements, etc. Curt might hear from Dr. Chui about it before Curt sees him next Monday for his last scheduled chemo treatment. It was almost 5 o'clock before we left OHSU.
Curt hit a few tennis balls yesterday for the first time since his last chemo treatment. He got a little light-headed doing it. He did play with my ladies' doubles (not so strenuous) a couple days after that treatment before he started to feel worse. It seems to be longer each time before he starts to feel better now. During this time he does walk and ride his bike some (and then takes a nap).
I get to have a root canal tomorrow afternoon. Not much compared to Curt.

Treatment #5

2009-09-08T21:12:00.000-07:00

Today was a long day. We left for Portland about 7 AM and didn't get home until almost 8 PM. Curt's weight (157+ lbs.) and blood pressure (108/81) were good. He saw a Nurse Practioner (instead of Dr. Chui) this time. Curt told her he was extra tired and it took longer to recover after his last treatment (which is a normal reaction). His stomach bothered him a little more the first week too, but he didn't feel like he was going to throw up. He only played tennis once (last Sunday) in the last 3 weeks, but we were busy with Maddie and Vega from August 28 to September 5. Angie was here for the first couple days and then she went to work for a couple days before she and Jef went to the coast for a couple nights to belatedly celebrate their 10th Anniversary. They came here Friday night (4th) in order to get to the first OSU football game at 11:30 AM on the 5th (OSU beat Portland State 34-7). They went home after supper that night and we went to our pinochle group.
Curt told the Nurse Practioner how his left ear really feels plugged up and that it affects his hearing. She e-mailed Dr. Chui, and he recommended Curt see Dr. Gross about the ear. Dr. Chui also recommended another MRI before Curt's last (we hope) treatment on September 28. So we are returning to OHSU in 2 weeks to see Dr. Gross and have the MRI. Curt also mentioned how much his nose runs (especially at night). Curt has had a few headaches above his eyes and has taken one Excedrin for that. He thinks the congestion might be the cause. The Nurse Practioner suggested he take some Claritin or Zyrtec to help with that.
Curt doesn't feel too bad right after the treatments. We stopped at Baker's afterwards to return a couple things they left behind. Vega started her preschool class (she will go every morning at Maddie's school from 9 to 11:30) and Maddie started First Grade today. They were anxious to show us the goldfish in their new water feature in the backyard. On the way to their house we looked at a Columbia Outlet store and after their house we stopped at the Woodburn Outlet Mall for Curt to look for a new lightweight jacket. Someone took his at church a week ago last Sunday. He did find one at Helly Hansen. So after stopping for supper, we didn't get home until about 8 tonight.
(Curt thinks I get too "sidetracked" on these blogs, but I was trying to explain why it took us so long to get home, etc. - I guess I also tend to talk too much).

Treatment #4

2009-08-17T20:15:00.000-07:00

Today was a long day. We were at OHSU for about 7 hours (about 9:30 to 4:30). We had to wait a little to see Dr. Chui (we actually saw his Intern first). Curt weighed 157.4 lbs and his blood pressure was low again (111 over 75). Curt mentioned that it seems like his left ear has been affecting his hearing more lately. This ear also has a very "crooked" canal from his surgery. Curt thought it started to get worse in Colorado. Dr. Chui said that a side effect of the Cisplatin medicine can be hearing loss. He asked me if I noticed Curt's hearing getting worse (I think it has a little). He wants Curt to have a hearing test in a couple weeks. Dr. Chui does not want to change this medicine though since it has done such a good job (he said it is better to be deaf than dead.) He said he showed the results of the MRI to a couple people (including Dr. Gross). They were impressed with the big dead tumor hanging in there. Curt was still getting tired after exercising (walking, cutting the grass, playing tennis, etc.). He wants Curt to have another MRI sometime after the next treatment that will be on September 8. He will continue with the chemotherapy until he doesn't see any improvements in the MRI.
After seeing the doctor, we had to wait a little to get started on the treatment. They were busy and put us in a room with no windows and a bed to start. We were there a couple hours and then Curt got to move to a recliner with a view of the river and Mt. Hood. His nurse was slow. She had a little trouble opening the Port completely, then we had to wait quite a while for the results of his blood tests. The other nurses had started his first bag of clear liquids while waiting for these results. She waited and started the liquids with the first medicine bag (they mix up this medicine in the Pharmacy right there - it doesn't have a very long shelf life and everyone is probably different). He has 2 big bags of the liquid he gets each time along with the 2 bags of the chemo-medicine. So we had to wait a little at the end for the last liquid bag to empty. We need to call the Corvallis Clinic in the morning about his followup shot tomorrow afternoon.
On the way home we stopped in Albany for supper and got gas and some other things at Costco. So we were gone from about 8 in the morning until 8 tonight.
By the way, we had a great time in Arrowhead, Colorado (west of Vail). There were 22 of us in a big beautiful house next to a couple tennis courts and pond with goldfish (the kids did some catch and release there). We all did different things but all went to a rodeo on the last night.
Last Friday we celebrated our 44th wedding anniversary.

VERY Good News

2009-07-27T18:23:00.000-07:00

Curt had a MRI at OHSU this morning and saw Dr. Chui later. He apologized for not having the results of the MRI, but did feel Curt's neck. He said it felt much better - soft and not "lumpy". We were concerned about Curt's "lightheadedness" - especially after rising. Curt even fell once last week. Dr. Chui feels this is the result of his treatment, hot weather, and not getting enough fluids. Dr. Chui said several patients coming in for treatments lately were dehydrated. Curt also thinks his level of activity (tennis, softball, etc.) contributes to being lightheaded. Dr. Chui is impressed with this activity. Curt's weight was 161.8 lbs and his blood pressure reading was 105/75. (The nurse wondered if he was asleep.)
We stopped at the Bakers after that and Dr. Chui called us there after looking over the MRI. He seemed exceptionally delighted that the MRI showed a significant decrease in the tumor (I think he even eluded to more than one tumor). He said we will decide whether to continue the treatments after our reunion in Colorado next week. Curt's next treatment is scheduled for August 17 right now. Dr. Chui thought more treatments might be good though. While driving back to Corvallis, our car's outdoor thermometer stayed right around 103 degrees. We are supposed to have temperatures over 100 degrees for a couple more days. We are so glad we now have air conditioning!

Change in Schedule

2009-07-09T13:41:00.000-07:00

OHSU called today and changed Curt's MRI and meeting with Dr. Chui from Monday, July 20, to Monday, July 27.
Curt is still doing well after his treatments. We stopped at Costco on our way home on Monday, and he walked around there and had some ice cream. Tuesday he did not do much before his shot at the Corvallis Clinic that afternoon. Wednesday we did quite a bit of shopping. We shopped around some in Corvallis the morning, and he had to rest before eating lunch at home. In the afternoon we went to Albany and shopped. This morning he planted some of the plants he bought yesterday and is now resting after lunch. He said his stomach does not bother him as much this time, but he still gets the hiccups quite a bit. He is talking about going to an outdoor concert in Albany tonight.

Third Chemo Treatment and Good News

2009-07-06T19:01:00.000-07:00

Last week was great at Eagle Crest with Angie, Maddie and Vega too (Jef was there on the weekend before we came, but had to work during the week). The weather was almost too hot, but we were able to do lots of things (swimming every day and some tennis, golf, hiking, bike riding, many games of Uno, etc.). Curt had to watch it swimming, because he forgot to bring goggles. He can't close his left eye, and he got water in it the first day. It really bothered him for awhile.
Today Curt saw Dr. Chui. He thought Curt looked much better. Curt was quite relaxed and slouching on his chair. Dr. Chui said the last time he saw Curt, he looked like he was in pain. No pain now! Dr. Chui was also impressed with Curt's activites and thinks the chemo is working. He wants to prove the tumor is shrinking by doing another MRI in 2 weeks (July 20). We were only at OHSU from 9 AM to 2 PM today. Curt weighed about 158 lbs. when he checked in and weighed about 164 lbs. when we got home. The last couple times he gained about 7 or 8 lbs. after each treatment. It takes a day or so for his weight to go back down. They pump in lots of liquids! The nurse had a little trouble opening his Port and took his blood in his arm first. However, the Port finally did open for the IV's. Tomorrow Curt will go to the Corvallis Clinic for his followup shot.
Curt can postpone the treatment in 3 weeks at the end of July, so he will feel better for our trip to Colorado on August 2-9 with our family and my brothers' family. His next chemo treatment is scheduled for August 17 and his last treatment is now scheduled for September 28.

Chemo Treatment 2

2009-06-13T19:53:00.001-07:00

Everything went well for the second treatment. Curt first saw the Nurse Practioner who was very impressed with his progress. She gave him a brief examination and talked with us. She couldn't believe he had been playing tennis, softball, and golf. She said the chemo must be working for him to feel like this and no longer have pain. She also thought his eye (not as protruding) and general appearance looked better. She ordered an MRI for him to have on June 27 before he sees Dr. Chui on July 6 and has his third treatment. The nurse who prepared him for his treatment couldn't believe how good his Port looked. She wondered who did it. Curt had a nice corner chair with windows looking both East and South. It was too cloudy to see the mountains. I enjoyed watching some work on a nearby skyscraper that was being built. Curt saw the Nurse Practioner after 10:30 and went into the chemo about 11:30. They first have to draw blood to see if everything is okay and start a "plain" IV. The blood results were very good. Then they start the 2 chemo bags. They take 1 hour each. We ate our lunch while all this is going on. He was done about 3 PM. He said he felt a little "drunk" afterwards. His main side effects seem to be hiccups (for about a week) and fatigue. We went back to Angie's and Curt rested. We had a "take out" supper. Jef had to work late. Curt, Maddie, Vega and I went to Angie's softball game at 6:15. It sprinked a little during the game (they lost). We were home about 7:30. After the girls went to bed, we played some more bridge. Curt got a little tired about 10 and wanted to quit (I think it was because he and Jef had gained a lot of points on Angie and me).
Today we went out for breakfast and went to Costco and Target. Vega got a bigger bike (16 in.). We went to a park after that so the girls could ride their bikes (it is too hilly around Angie and Jef's). Curt rested again after lunch. We went back to OHSU at 3:15 for his followup injection and then stopped at the Woodburn Mall to do a little shopping. Curt got tired and went to the car before the last store. We had a little something to eat at Arby's nearby and made a couple more stops before getting home after 6:30. Curt is reading our mail and papers now.
So far, so good!

Port Operation

2009-06-11T12:26:00.000-07:00

Curt has been doing well since his first chemotherapy. He was almost back to doing everything as before. He has played tennis several times, but doesn't have as much stamina with singles. He has pitched 3 coed softball games (won 1 and lost 2), golfed 9 holes, worked in the yard, etc. He is most happy about not having any pain. He thinks he might have taken a couple Tylenol since his treatment. His eye also does not bother him as much.
We came to the Bakers in Lake Oswego on Tuesday afternoon. We enjoyed watching Maddie and Vega do their tap, ballet and gymnastic routines then. We walked Maddie to her last day of school on Wednesday and then went to the lower campus of OHSU for a class on chemotherapy from 10 to after 11:30. A Social Worker, Nurse Clinic coordinator, Dietitian, and AMC Patient Navigator spoke and gave us a notebook with lots of handouts. We ate lunch at a Thai Restaurant and did a little birthday shopping for Jef before going back to Bakers. Curt went for a walk with the girls later in the afternoon. We have been continuing our bridge marathon with Angie and Jef in the evenings. So far the women are ahead for the year.
This morning with had to be at OHSU's upper campus at 6 AM! We got to meet the surgeon, Dr. Billingsley, before he went into surgery at 8. Curt had heavy sedation and did well. There are 2 incisions. The bigger one is near his right bone below his neck. This is where the dome-shaped disk about the size of a dime or penny is that will be used as the "Port" for all blood work and chemo from now on. A special needle can be inserted in it almost indefinitely. There is a catheter that goes under his skin from there up about 3 inches to a large vein in his neck. That is where the smaller incision is. They insert this catheter into the vein and it goes down about 3 or 4 inches toward his heart. The doctor came to me in the waiting room to see me about 9 (the surgery takes about 35 minutes) and said it went well. I went back to the recovery room and we had to wait about an hour for a portable x-ray machine to come and x-ray that area to make sure it was okay. They would not give any liquids until they knew they would not have to do any more operating. Curt was pretty drowsy and it didn't seem to bother him. They only complaint he had was around the neck incision. The nurse said it is harder to numb that area. They gave him an ice pack to put on the area and an Oxycodone to help with any pain he might have. They also gave us one of the special needles to use as needed if we are someplace where they do not have the needles. We got back to Bakers before 11:30. Angie and the girls took off shortly after to go swimming (indoors - it has been a little cool, around highs of 70). They will be back after 1:30. Curt ate some cereal and is now resting. The hard part for him might be that he can't play any tennis or softball for about 10 days. They want those incisions to heal first.
Tomorrow we return to OHSU at 10:30 for the second chemo treatment. We hope to watch Angie's coed softball game that evening at a nearby Junior High School. Saturday afternoon Curt will have the followup shot and we can return to Corvallis.

Followup

2009-05-27T14:44:00.000-07:00

Curt has been doing pretty well since his treatment last Friday. At 1:30 PM on Saturday we returned to the upper campus of OHSU for his Neupogen-type shot to start rebuilding his white blood cells. The nurse recommended he stay away from crowds for at least a week (she gave him some masks to wear sometimes, but he hasn't used them yet). It was interesting that his weight was up about 8 lbs.!. Since then, it has returned to about 159 lbs. We did stop at Costco in Albany on the way home for some shopping and ice cream. He napped for about 1 1/2 hours when we got home and watched TV that night. He was happy that he had little, if any, pain and was able to read a book during the treatment and not have his eye bother him. It has continued that way so far.
So Curt did not go to church on Sunday (crowd). He fertilized his flowers, etc., outside in the morning, listened to a book on CD, napped, mowed the grass, and watched some TV. Monday we went to a friend's house from about 10 AM to 5 PM. We took about an hour walk (the weather has been great since we returned), ate and visited. Later that evening we went to the tennis club and hit some tennis balls for about 45 min. No naps this day.
Tuesday morning Curt played some singles tennis, but did not complete a set. He said his legs seemed rubbery. He cancelled his dentist appointment for that day because of the possiblity of infection (he takes his temperature every day). I drove him around for several errands in the afternoon. He had finished his followup anti-nausea pills the previous day and his stomach starting feeling a little queasy. He took a backup anti-nausea pill in the afternoon. They had him get 3 different anti-nausea prescriptions to use if necessary. He feels better if he eats or drinks a little. Tuesday night our neighbors had us over for some Gluten Free cake.
I worked at the Thrift Shop this morning. Curt said he did not sleep well last night (too many trips to the bathroom). He listened to a book and napped a little. He went to the store on his own this afternoon to return something and is napping again. There is a makeup coed softball game Friday night at 8:40 PM and another game this Sunday. He wants to go to those and might play. I think he might go to church Sunday too.

Chemotherapy

2009-05-22T16:19:00.000-07:00

We had a nice visit in Illinois from May 5 to 20. We started by celebrating Beth's 40th birthday and watched lots of baseball and soccer. The weather was cool a lot of the time (the wind made it extra cold). Some games were rained out. We also went to a Boy Scout Olympics, helped the boys with their school work, and Curt launched 2 rockets into orbit (we assume they are in orbit because we could not find them). We were able to see both of Curt's brothers, his aunt and uncle, Jason's parents, and Curt's former baseball catcher from 5th through 12th grades. When we left, Beth's kitchen was gutted. They hope to have the new one done in about 3 weeks.
We got home about 10:30 on Wednesday night (20th) and came back to Angie's Thursday evening. Curt went to OHSU at 8 this morning. He first saw a Nurse Practioner who checked him over (he weighed 158.3 lbs.!) and talked about the treatments. She also mentioned we might work with a Palliative Care Team later. I think they are concerned about the tumor being so close to the carotid artery. They hope these treatments will cause the tumor to shrink in this area (as well as other areas). He will see Dr. Chui on July 6 to check it out. After seeing the Nurse Practioner, we waited back in the waiting room before going to one of the 22 stations they have for treatments. We had a nice view of Mt. St. Helens from the 7th floor of the lower campus building. Curt had a nurse there who put in the IV, hydrated him for awhile, gave him a steroid and another anti-nausea pill, and finally started the first drug (Taxotere) about 11 AM. After an hour she gave him the second drug (Platinol) for an hour. It took about 45 minutes to finish his last hydration. We were out of there before 2. Curt read a book and rested during the treatment. The Pharmacist came to tell about more anti-nausea pills to take. They would prefer he not take so much Excedrin and try some Tylenol instead. He hasn't taken any of those all day. On our way back to Angie's, we stopped to get a few groceries. We got back before 3 and Curt has been sleeping since then (about 1 1/2 hours). Tomorrow at 1:30 we return to the upper campus of OHSU so Curt can get a shot of Neupogen that will help to rebuild the white blood cells that were killed by his drug treatment. He can do whatever he feels like and needs to drink a lot to flush out the chemicals.
On June 9 we will return to Lake Oswego to watch Maddie and Vega's dance and gymnastic "recital". On June 10 we will attend a class from 10 to 11:30 at OHSU about chemotherapy. On June 11 he will have a "Port" surgically implanted in his upper chest for future blood tests and treatments. His next treatment will be on June 12 (provided the blood tests are okay at that time).
So far, so good. The next few days will tell more about how he tolerated everything.

Bad News

2009-04-30T20:48:00.000-07:00

Today we spent 2 1/2 hours at OHSU. We first talked to a "Fellow Doctor" of Dr. Chui's. He said there was a significant change in the tumor from last November. It is growing down around Curt's carotid artery and up towards his brain. If it continued to grow unchecked into the brain, Curt could have symptoms of meningitis (stiff neck, sensitivity to light, confusion, etc.). Growing around the carotid artery could lead to serious bleeding. They said we could go to Illinois, but if he has any of these symptoms, he might have to go to emergency and we should to return to Oregon as soon as possible. They said he would probably feel more pain now, if they hadn't removed so many nerves during his operations. To be safe, Dr. Chui gave Curt a prescription for more oxcodone. The "good news" is that they think there is more than a 50% chance they can shrink the tumor with strong doses of chemotherapy. However, they cannot get rid of the tumor completely. They want to get started as soon as we return from Illinois (he will start on Friday, May 22). They will use 2 drugs (Cisplatin and Taxotere) one day every 3 weeks for a total of 6 treatments (depending on how things go). After the first treatment through a vein in his arm, he will have a port inserted in his chest for further treatments and blood draws. The veins in the arms are destroyed after a treatment. He will take a steroid pill the day before and have a Neupogen shot (against infection) 24-48 hours after the treatment. We will only have to go to Portland the day of the treatment (when it is early in the morning, we will probably stay at Angie's the night before). They are going to see if Curt can get the shot the day after in Corvallis. He will gradually feel worse for 4 to 10 days after the treatment and then gradually feel better. There are lots of possible side effects he could have, but everyone is different. Because Curt is in good shape, there might not be as many side effects. He can be as active as he feels like. After a couple treatments, they will do another MRI to see if the tumor is shrinking. They think he will have fast relief from the headache pain he is having now after the first treatment. They would like for us to take a class there about chemotherapy, before he starts but there is not enough time. We spent quite a bit of time with a nurse(?) who explained some things, gave us some literature, and showed us where he will have treatments (on the 7th floor of the building by the river with good views looking south and looking at Mt. Hood). Another good thing today, was that he weighed about 157 lbs.! Curt also cancelled his surgery on his eye on June 1 today.
I hope I remembered everything (Curt helps me). We had a lot thrown at us today!

Change in Plans

2009-04-27T12:56:00.000-07:00

Curt is probably going to postpone the eye surgery scheduled for June 1. For the past week he has been taking one Extra Strength Excedrin about every 6 hours for headache pain above the eye and occasionally in his ear. The pain occurs regularly even when he reduces his reading or watching TV, and includes getting up at night. He is still playing tennis and continuing other activities. His weight is about the same, but he feels he is getting a little weaker. He e-mailed Dr. Gross, who contacted Dr. Chui about starting chemotherapy after we return from Illinois (May 5-20). Curt has an appointment with Dr. Chui this Thursday at 11 AM at OHSU.

Dr. Dailey, MRI & Dr. Gross

2009-04-14T19:58:00.000-07:00

Because his eye has been bothering him the past few weeks, Curt had an appointment with Dr. Roger Dailey at the Casey Eye Institute at OHSU this morning at 8 AM. We spent the night before at the Bakers in Lake Oswego. Another doctor (possibly a Resident Doctor) really checked out Curt's eyes (he even measured how much tears they produced). After that Dr. Dailey came in. He seemed very competent - mentioning articles he had written and read about concerning similar eye problems. He recommended more surgery to put in another heavier gold weight in a different position in the eye lid (I thought his latest weight was not in the right position and caused some of his problems), take a tuck on the side of the eye and anchor it with alloderm (which is holding his jaw in place now), put some enduragen (sp.?) under the eye, and tuck up his cheek some more. The surgery right now is scheduled for June 1. Dr. Dailey suggested some other eye drops and a spray too. One reason Curt's eye hurts more after reading, watching TV, etc., is that it doesn't blink when doing these. The eye does not bother him when he plays tennis.
After Dr. Dailey, we went from the Eye Institute through a maze in the basement of the main hospital to get to his MRI. That was delayed because of an emergency that came in. They did give us each $5 gift certificates to use in the cafeteria though. By the time we saw Dr. Gross, it was 2 hours late. Curt is still at 154 lbs., which is a couple pounds less than the last time. When Curt mentioned some pain above his eye and a little inside his left ear at times, Dr. Gross said he wanted to look at the MRI. He came back and said there was definitely a change that did not look good. With Curt's other symptoms of some pain, weight loss, and less energy, he thinks it is the cancer is slowly growing (he won't say for sure though and says he has been wrong before with other people). He said Curt really needs the calories (i.e. Boost, Ensure, etc.) and could go ahead with the eye surgery if he is not showing more symptoms (more pain, weight loss and lack of energy). We should go ahead with our 2 week trip to Illinois in May and keep making plans for now. We should e-mail him after our return to tell him how things are going. If things are worse, he should consider chemotherapy and postpone the surgery.

Annual Checkup

2009-03-20T10:16:00.000-07:00

Curt went to his new primary care doctor (Dr. Chee Lee) on Wednesday. He had all his lab tests done before hand, and they were all good. His weight was only 154 lbs. The doctors have been telling him to drink Boost or Ensure during the day sometime. He has played tennis 5 days in a row and is playing doubles today. He still needs to rest after this. He has started to take some Extra Strength Excedrin for pain, but not on a regular basis. On April 14, he will have another MRI at OHSU and see Dr. Gross.
We are looking forward to seeing Beth, Aaron and Sam. They arrive tomorrow night and will return the next Saturday. We will split our time between Corvallis and Portland with the Bakers. We hope to go to an OSU baseball game (weather permitting) on Sunday and an OSU basketball game on Monday (our team is in the second round of the CBI tournament). Aaron will be 10 on Monday too!

Dr. Downs

2009-03-06T10:57:00.000-08:00

Curt saw Dr. Downs yesterday. Dr. Downs is moving to North Carolina at the end of this month, but he didn't think he needed to see Curt again unless something comes up. Curt's eye is now closing better, and he is adjusting to chewing again. He hasn't taken any pain medicine for a couple weeks but does feel a little something occasionally. He needs to use eye drops frequently for the dry eye but there is less "matter" in it in the morning. He is able to read for several hours and watch more TV now too. The scar on his forehead (from raising his eyebrow) might take 6 months to "disappear". The only things we are concerned about now is his weight and stamina. I think he has lost a few pounds. It is hard for him to chew and then there is the Celiac disease too. Hopefully this weight problem isn't caused by something else. He is playing tennis about 3 or 4 times a week, but only singles about once or twice. Usually he has to rest or take a nap after tennis and other times too. Wednesday (March 4) was his 66th birthday. He said the major tune-up on his bike last week could be one of his presents (he is hard to buy for). He rides his bike often too. Dr. Downs said we should contact Dr. Gross about his progress now. On March 18, Curt has his annual physical with his new primary doctor in Corvallis.
We are babysitting for Maddie and Vega today. Maddie did not have school today and Angie is in New York (from Wednesday to Sunday) with 3 of her "girlfriends". Jef is busy with some bank regulators this week and next week.

Dr. Downs

2009-02-06T10:50:00.000-08:00

Yesterday Curt saw Dr. Downs at OHSU. There was good news and bad news. The headache pain is less but not gone completely. He is still taking some Extra Strength Excedrin but not oxycodone. The pain from the surgery should be pretty much gone by now. His eye does not close completely, but is better than before the surgery. He doesn't have much of the accumulated matter in his eye in the mornings now. After everything "settles", the eye could close better. His cheek no longer "caves-in" to interfere with chewing, but he has to be careful not to bite his lower lip at times when he chews. Over time he should learn to chew without this biting. He will see Dr. Downs again on March 5. We will probably contact Dr. Gross next week if he still has headaches. To end on a good note, he is now reading and watching more TV, and he is going to hit a few tennis balls this morning.

Day After Surgery

2009-01-27T15:03:00.000-08:00

I think I left off waiting for Curt to go home. He was really thirsty (he had no liquids since midnight except for a sip of water with a pill that morning) and drank lots of apple juice and some jello in the recovery room. We got back to Angie's after 5:30 and Curt ate some supper too. His left eye really bothered him for a while (watered), but finally settled down. He noticed the difference in his mouth too. His cheek does not feel so caved in. He bit his lower lip, but is not sure when that happened, and thinks eating will be better. He took some oxycodone when we got to Angie's and before bed (about 9). He had trouble sleeping with his head elevated to help with the swelling and used eyedrops a few times. He is used to sleeping on his stomach.
We had an exciting ride to see Dr. Downs this morning. It was snowing when we got up after 7. We left about 9:15 and Angie mentioned we might have trouble with about 1 to 2 inches of snow and the steep hill down from their area. I went slowly, started going sideways and managed to head into the curb. Some people standing there recommended we stay there, but other cars managed to make it down. A man standing there offered to drive it down (I was most of the way down and Curt is not supposed to drive) while a couple ladies held up the cross traffic at the bottom - so I let him. After we got down, a car coming down behind us went sliding across the road at the bottom and up over the sidewalk. Angie suggested we drive through downtown Lake Oswego and on Hwy. 43 along the river to OHSU's lower campus (instead of taking the Interstate). The traffic to downtown L.O. was stop and go. An ambulance passed us. We were almost 45 min. late for the appointment, but I guess some other people had problems too. Dr. Downs cleaned his forehead wound and thought everything looked good (considering). We need to keep the wounds lubricated twice a day. He will have swelling and bruising for several days, but his eye does close better now. They gave us the gold weight that was in his eye before - very interesting. Dr. Downs said to keep using the dry eye drops until the eye adjusts to its new configuration. It will take a couple weeks before we know if this will eliminate the pain. He cannot play tennis or do any heavy lifting, etc., for a couple weeks either. He took some oxycodone this morning and switched to Excedrin when we got home. By the time we headed back to Corvallis (about 11:30), it was just raining and wet. We stopped to eat in Albany and got home after 2. Curt wants to go to his class at church tonight. I will take him and he will get a ride home. I admire his resilience! He sees Dr. Downs again on February 5.

Surgery Complete

2009-01-26T15:10:00.000-08:00

Dr. Downs came about 2:15 and said the surgery went well. He raised Curt's eyebrow, tucked the corner of his lower eyelid, and put in a heavier weight positioned closer to his nose in his eyelid. This should help with his eye closure - and hopefully the pain. He also was able to use the "aloderm" (sp.) that Dr. Wax used in the September 2007 surgery pull up his upper lip and did not need to use the Goretex and screw in his cheek. So the surgery only lasted about 3 hours. We are waiting to see him in the recovery room. Dr. Downs thought he could probably go "home" (to Angie's) about 4:30 or 5 and do and eat what he feels like doing. Curt will take antibiotics and can go back to his Excedrin tomorrow if he wants. We will see Dr. Downs tomorrow at 10 AM and will head back to Corvallis. We will return a week from Thursday (Feb. 5).

Beginning Surgery

2009-01-26T11:34:00.000-08:00

Angie and I are in the waiting room. I'm using her laptop. Curt and I got here at 8:30, and Angie came at 9:00. We were able to wait with him in the prep room. Dr. Downs came by about 10:30. He said he might raise his upper lip using the sling Dr. Wax used during the operation on September 2007. He will have to see when he gets in there. Curt has been in a lot of pain with his eye and around it - especially since he could not take any aspirin after last Tuesday in preparation for the surgery today. He has been taking a lot of oxycodone and Tylenol and not doing much. The oxycodone has some side effects he doesn't like. He finally went into surgery after 11. Dr. Downs said he thought he might be ready to go to Angie's about 5 o'clock. I will write more tonight.

OHSU Visit

2009-01-20T17:14:00.000-08:00

It was a beautiful day to drive to Portland and ride the tram from OHSU's upper campus to the lower campus by the river. You could see all the mountains and the sun was shining. We were late to see Dr. Gross from the Preadmission Testing Clinic, but everything went well there. Dr. Gross checked Curt's nose and throat with his "snake camera", and said it looked good. He thinks the surgery will help with Curt's headaches since most of his pain is around his eye. He also said that Curt's reading and watching TV could contribute to the dryness in his eye because he probably does not blink while doing this. He is still noncommittal about the "suspicious" spot. He wants us to keep in touch via e-mail after Curt's surgery and will contact us about another appointment. If Curt's headaches continue a couple weeks after the surgery, he will schedule another MRI sooner than April or May. We felt pretty good after seeing him. After a quick lunch, we saw Dr. Downs. He thought Curt's left eye looked irritated and slightly swollen in the corner of his lower lid, so he might correct that as well as raising his eyebrow and adding another weight to his eyelid. He will pull up his upper lip with 2 Goretex "strings" imbedded in his cheek and attached by a screw to his cheek bone. The surgery should take about 4 hours. We will spend the night at Angie's and then see Dr. Downs the next morning before returning to Corvallis. There will be another followup appointment in 1 1/2 weeks. After about 2 weeks, Curt can start to return to most of his activities (i.e. tennis).

The Next Operation

2009-01-16T13:42:00.000-08:00

Curt has surgery scheduled for his eye and mouth with Dr. Downs at OHSU on Monday, January 26. We are going to OHSU next Tuesday, January 20, for his "pre-op" and to see Dr. Downs and Dr. Gross. He already had an appointment with Dr. Gross that was scheduled last November. Curt wants to have this done as soon as possible because his eye continues to bother him. He is now taping it shut at night to see if that will help. He substituted in my ladies tennis group yesterday. Because of his hernia surgery, he is supposed to wait 3 weeks before tennis (that would be next Monday), but I guess he is getting desperate and my tennis is not like his tennis.

January 6

2009-01-06T18:37:00.000-08:00

Curt saw Dr. Hudson this morning to check on the hernia surgery. He gave us some interesting pictures of Curt's intestines. There was only about 1/4 to 1/2 inch of skin covering them (there should be some muscle and fat between the intestines and skin). Now there is some mesh to help keep them in place. Curt no longer takes pain medicine for that, but needs to take it easy for a couple more weeks. He will see Dr. Hudson in a month.
Late this afternoon Curt saw Dr. Downs at OHSU. When he came in, he said, so here is the famous Mr. Cook. (He had talked to Dr. Gross.) After looking at Curt, he said he can raise Curt's left eyebrow and put in a heavier weight in his eyelid to help his eye to shut and not get so dry. This could help with the pain he has been having in and around that eye. He is also going to put a screw in his cheekbone and make a sling with Goretex to pull up his lip. This might help with eating and talking. This will be outpatient surgery at OHSU that could take about 4 hours. It will be in about a month. We are spending the night at Angie's tonight since it is dark and raining (lightly).

Appointments on the 6th

2008-12-30T10:03:00.000-08:00

This is the reply we got from Dr. Gross:
Curt,
I would start with Dr. Downs. If you eye is getting dry, then you have a reason for the eye pain. There is a worrisome area on your scan at the base of the skull where the cancer was first discovered. If this is recurrent cancer, then it could cause headaches and face pain as it gets bigger. I suggest that if your eye is ok after you see Dr. Downs and you still have the pain, then it may be worth seeing Dr. Chui or Dr. Holland again to discuss options.
Dr. Gross
So on Tuesday, January 6, Curt is going to see Dr. Hudson for his followup on the hernia operation at 11:15 in Corvallis, and then we will drive to OHSU for an appointment with Dr. Downs at 4:30.

Hernia Surgery

2008-12-29T15:24:00.000-08:00

We went to Good Samaritan Hospital in Corvallis this morning at 7AM. Curt went in for surgery before 10 and I talked to Dr. Hudson about 11:20 afterwards. He said everything went well. There was a hole about 3 or 4 inches in diameter, and they covered it with mesh through 4 small incisions. He also looked around inside and didn't see anything. We were home about 1:30. I went to get some pain medicine for him, and he has been resting. He can take off the bandages and take a shower on the last day of the year. He is not supposed to drive for about a week and gradually go back to a normal diet and activities. He has a followup appointment next Tuesday with Dr. Hudson. We are writing an e-mail to Dr. Gross about what to do for his eye.

Cancelled Appointment

2008-12-23T19:10:00.000-08:00

We got a call Monday night about 6:15 to cancel Curt's appointment today (Tuesday, Dec. 23). The person was calling from home because OHSU was not open due to the snow storm. She had an e-mail that Dr. Downs was stranded somewhere. They will call to reschedule when they are back in their office. Dr. Downs only sees patients on Tuesday and Thursdays. Curt's eye is still bothering him. He did get a call this morning from the Corvallis Hospital about his hernia operation on Monday. He needs to be there at 6 AM for the 7:30 AM surgery.
We decided to drive to Lake Oswego today because today was supposed to a break between snow storms. We left Corvallis about 1:20 and stopped for gas at Costco in Albany. We did not get to the Bakers until about 5:15 tonight (it usually takes about 1 hr. 20 min.). The traffic was stop and go in Salem and Woodburn because some people were stopping to put on chains. There were tracks to follow on the road. After Woodburn some were really bumpy. We did not put on chains and made it to Maddie's school parking lot. Jef met us there with his 4 wheel drive and chains. We transferred everything and then drove to their house During the night and morning, there is supposed to be about 3 or 4 more inches of snow and then freezing rain. On Christmas day the warm temperatures (upper 30's & 40's - our usual temperatures for this time of year) are supposed to return to start melting all this snow. We have very little snow in Corvallis now. What a difference! We plan on returning to Corvallis on Friday, weather permitting.
MERRY CHRISTMAS!

Appointment Change for Eye

2008-12-18T15:53:00.000-08:00

Yesterday Curt went to see his eye doctor to make sure there is no infection in his eye. The eye doctor said his eye is very dry and to continue with the eye drops. He did not know about the prescription eye drops Curt is also using. This morning Curt called Dr. Downs office and changed his appointment from January 20 to next Tuesday, December 23, at 3 PM. So we will go to Lake Oswego a day earlier for Christmas.

Curt's Eye

2008-12-16T09:59:00.000-08:00

Dr. Downs office called from OHSU yesterday after Curt called Stepanie again about his eye. Dr. Downs is a plastic surgeon specializing in the face. His office said they got an e-mail from Dr. Gross' office about Curt. Dr. Downs' office is by the river. Curt is going to see him for consultation about surgery on the same day he sees Dr. Gross on January 20 (unless Curt's eye bothers him too much before that). He is using both the prescription eye drops from Dr. Gross and the over the counter eye drops. His eye bothers him more after reading or watching TV. He likes to lie down for awhile after putting in the drops. So far Curt is still on for the hernia operation on December 29.

Hernia Operation

2008-12-12T14:50:00.000-08:00

Curt saw Dr. Hudson at the Corvallis Clinic (after being referred from his new primary doctor at the Clinic, Dr. Lee) today about surgery for his stomach hernia caused by the removal of one of these muscles to be used for "filler" in his jaw during his major surgery a year ago last September. Right now the hernia surgery is scheduled for Monday, December 29. He could spend the night afterwards (it depends on how the surgery goes), and might only have to give up tennis for about 3 weeks afterwards. He almost weighs 160 lbs. now!
Earlier this week Curt called Dr. Wax's office at OHSU about his eye. It has been watering a lot and having some pain. He started to use a prescription eye drop from Dr. Gross that he got a while ago, and that has seemed to help. He will see Dr. Gross again on January 20.

Gross Visit Continued

2008-11-25T13:15:00.000-08:00

I forgot to say Curt is still going to see Dr. Gross again in January and have another MRI/PET scan in April.

Visit to Dr. Gross

2008-11-25T11:21:00.000-08:00

Curt has been having some minor headaches around his left eye and above it, so we e-mailed Dr. Gross on Sunday and were able to see him this morning. We didn't realize that Curt had both an MRI and PET scan of his head on November 10. Dr. Gross said the PET scan showed there is still some "activity" in his head, but they are not sure what it is yet. As long as Curt's headaches do not interfere with his lifestyle, he does not need to do anything else. He thinks Curt has a high tolerance for pain. Curt did take an Advil on Saturday and might take some ibuprofen or Tylenol, etc., when needed. We are having a nice visit with all of our family. The Bogners arrived on Saturday and we are staying at the Bakers until tomorrow when we will go to Corvallis for Thanksgiving. The weather was nice on Sunday and Monday. Sunday we visited the Vista House (very windy), Multnomah Falls, and the Bonneville Dam and Fish Hatchery in the Columbia Gorge. Maddie has kindergarten Monday through Wednesday this week. Yesterday afternoon we took a short hike at the nearby Tryon Creek State Park and spent some time in their Nature Center. Today we might visit the Oregon Trail Museum. Jef and Jason are going to the Civil War game on Saturday and the rest of us will come back here. The Bogners leave on Sunday.

Call from Dr. Gross

2008-11-17T15:27:00.000-08:00

Curt finally heard from Dr. Gross this afternoon while I was at an Antique Meeting. He said there is still something at the base of the skull or a little lower, and they are still not sure what it is (could be a tumor, or possibly scar tissue). It has changed very little, if any, from the last MRI. As long as Curt does not have any other symptoms (i.e. headache or trouble opening his jaw, etc.), there is nothing to do now. He would like to see Curt again in January and have another MRI in 6 months. He said Curt could go ahead with surgeries for his jaw/lip and possibly his eye with Dr. Wax. He can also have the hernia repaired in Corvallis. Curt might contact Dr. Wax later this week.

November MRI & Dr. Wax

2008-11-10T20:43:00.000-08:00

We just returned from Portland after Curt's MRI and seeing Dr. Wax and his "Fellow" doctor (a doctor from Cleveland who is studying under Dr. Wax for a while), and then having dinner with Angie's family. The "Fellow" doctor removed a chunk of wax from Curt's ear and mentioned the canal in this ear is not straight like ours after all the surgery on it. They said they could put a heavier weight in his eyelid to make it close more, but this would make his eye get very tired by the end of the day. Dr. Wax could pull up his upper lip and straighten the lower lip, but he could not do anything about his bite since part of his jaw bone was removed during the surgery. The hernia from his removed stomach muscle could be repaired here in Corvallis. We did not see Dr. Gross because he was not available for another hour (we could have waited, but Dr. Wax said he could talk to him). They want to study the MRI and will not get back to us for another day or two. They won't do any cosmetic surgery until they see what is on the MRI. So we are still waiting!

November Appointment

2008-10-02T14:00:00.000-07:00

Curt's next MRI is going to be Monday, November 10. He will see doctors Wax and Gross later the same day.

Good Summer

2008-09-07T15:52:00.000-07:00

Well, we had a good summer and Curt seems to be doing well. The coed church softball team even made it to the playoffs! Curt did most of the pitching for the team. We never heard about the "extra" MRI in July and assume everything was okay. We had a good week with Angie's family at Eagle Crest in July and a good 10 days with Beth's family in Schaumburg, IL in August. Following that we spent 5 days in Moline, IL and got to see both of Curt's brothers and some other relatives and friends. The weather was great while we were in Illinois and it is great back in Oregon.
Last Friday, September 5, Curt had laser TURP for his prostrate (non-cancerous). He had the procedure about 10 o'clock and we were headed home by noon. He will have some discomfort for a few days and should be back to "normal" activities in a week or two.

Another MRI

2008-07-04T09:04:00.000-07:00

We had a call from the MRI technicians at OHSU this week. They said their radiologist told them they did not cover all the areas completely on their last MRI and Curt needed to return for another MRI in the area they missed. So yesterday we went back to OHSU and they did it. I thought they said the missed area was in the jaw area and the doctors keep talking about the area at the base of the skull. We don't kow if these are the same areas. We are not sure why it took so long for the OHSU radiologist to look at this, but maybe they thought the UCSF doctors were covering this. The UCSF doctors didn't say anything about it. OHSU said there was no charge for this (our insurance covers it anyway), but it was an inconvenience (not counting the cost of gas) since we are leaving today for a week at Eagle Crest with Angie's family.

GOOD NEWS!

2008-06-25T16:38:00.001-07:00

Dr. Eisele called while we were both out today. He left a message that was cut off, but we were able to talk to him later (actually I talked to him while Curt was golfing). He said their tumor board was not sure the cancer had returned (without a biopsy). It could be an inflamation (Dr. Gross also mentioned that). Since Curt does not have any other symptoms, they did not recommend chemotherapy. They did recommend that Curt have another MRI in 4 to 6 months. We cancelled Curt's appointment with Dr. Chui tomorrow and have left a message with Dr. Gross. Dr. Eisele said he would try to contact Dr. Gross too (he tried to call him before he called us). We gave the wrong phone number for Dr. Gross to Dr. Eisele in the note we sent with the MRI. So we are feeling much better!

MRI

2008-06-23T20:46:00.000-07:00

Everything went well today. We got to OHSU a little after 11 and checked in for the MRI. They gave us a pager and said they would call us if we could get in earlier than our appointment at 4 PM. They called about 2:45. It didn't take 3 hours - "just" a little less than 1 1/2 hours. We then went up to the film library to get a copy. That closed at 6, but we got there before 4:30. Their last FedEx pickup is at 3. The lady was nice and called a few places. She found out a Kinko's FedEx by Portland State University had a 7 PM pickup. That was just down the hill from OHSU. So we were able to get it shipped overnight to UCSF. Right now Curt is scheduled to see Dr. Chui this Thursday, June 26, at 1 PM. We hope to hear from Dr. Eisele at UCSF before that.

Appointments on June 23

2008-06-17T19:21:00.000-07:00

We have a slight change of plans on Monday, June 23. Our morning appointment with Dr. Chui was cancelled until we hear from Dr. Eisele at UCSF. Dr. Gross scheduled 2 MRI's (one with contrast) at 4 PM that day (the earliest time they could get) that will take 3 hours. They suggested we come early to see if there are any cancellations. We hope we will have time to get copies sent to Dr. Eisele for their tumor board on June 25.

The weather has been great here. Any rains have been at night. This week the temperature during the day is in the 70's. Aaron's soccer game in Rockford on Father's Day was cancelled because the fields had been flooded. So far we have seen 3 of Sam's T-ball games and 1 of Aaron's traveling team baseball games (one game was forfeited when the other team did not show up). We have 2 more of Aaron's games to watch on Thursday and Friday evenings. Today we got to see my brother and his wife. They are heading back to Kansas tomorrow. Tomorrow Curt's older brother and wife are going to meet us at a Scandinavian Festival in Geneva, IL after the boys' baseball (Sam) and basketball (Aaron) camps in the morning. They will be here until we leave on Saturday. Curt's younger brother is coming Friday. Thursday morning we hope to visit Curt's aunt and uncle in Batavia, IL.

UCSF

2008-06-10T20:24:00.000-07:00

Yesterday we had a good flight to Oakland. Since we had no time constraints, we decided to travel like we do in Europe and took the BART and a long, interesting city bus ride right to our hotel in SF (at the corner of Presidio and California Streets). This morning we took a short taxi ride to the UCSF Medical Center to see Dr. Eisele (who is the chairman of their Otolaryngology Department). His nurse and a Resident doctor met with Curt before Dr. Eisele. Dr. Eisele reminded us of the neurosurgeon (Dr. Delashaw) at OHSU - very personable and to the point. We have heard good things about him and saw a certificate on the waiting room wall saying he was selected as one of "The Best Doctors" in the U.S. by some magazine. He came in and after some initial banter said "Let us cut to the chase". He wanted Curt to tell about his symptoms and his two surgeries, etc. He said it is very rare for squamous carcinoma to first show up on the trigeminal nerve. It needs to start somewhere else. This is what the OHSU doctors find perplexing too. Dr. Eisele wants to see the pathology slides and the MRI scans, etc., from both surgeries. So after a few phone calls we were finally able to arrange for OHSU to send these things. We brought all the other medical records for them to look at later. Dr. Eisele knows Dr. Wax and said he did a good job on Curt. He thought Curt was healing very well. Dr. Eisele thought the PET scan in April could have occurred when things were still too unsettled and could give inconclusive results. Curt did have an MRI in April too. Dr. Eisele wants Curt to have another MRI as soon as we return to Oregon to see if there are any changes. He thinks it is good that Curt has maintained his weight (around 155 lbs.) for the past couple months and that Curt has no pain or other symptoms now. Like OHSU, UCSF also has a tumor board that meets once a week. Dr. Eisele will be gone next week, so his next meeting with them will be on June 25. If Curt can get his MRI on June 23, they could send it over night for them to look at before their board meeting. So it looks like we might have some answers after that and decide when and if to do chemo.
We were able to get a taxi to the airport after Curt's appointment and had a good flight to Chicago. The weather isn't too bad here (so far). It was beautiful in San Francisco. Tomorrow we see Sam play baseball. Curt pitched for our coed softball team on Sunday night and got 3 hits. It was a good game that we won in the last inning.

UCSF Change

2008-06-06T14:38:00.000-07:00

We had a call late this morning from UCSF. They said Dr. Wang had to perform emergency surgery on Monday afternoon and wanted to reschedule Curt for the following Monday. We told them we couldn't do that because we already had plane tickets. So they called back and said Curt could see the head of the department (Dr. Eisele, we think) at 9 on Tuesday morning. Our plane to Chicago leaves at 1:25 PM. They said Dr. Eisele is on time and Curt is his first appointment. We hope this works out.

Home (temporarily)

2008-06-06T08:33:00.000-07:00

It feels good to be home and back in the USA. I forgot to mention one neat town (Les Baux) we visited in Provence, France on our way to Roussillon. This town sets way up high on a hill and has some interesting ruins of a castle. The views were spectacular. We did take the train to Heidelberg on Monday. That is a nice town with lots of tourists. Tuesday we took the train to Frankfurt and stayed with the family of one of Curt's former students. His former student took us to the airport on Wednesday. We had 2 meals and watched 2 movies on our flight to Portland (about 9 hrs. 45 min. - left Frankfurt about 10:15 AM and arrived in Portland about 11 AM). We took the shuttle to Corvallis and finally arrived home about 3 PM. We managed to stay awake until 9 and had a good nights sleep. We are still catching up. Curt saw his regular eye doctor yesterday. The doctor said he could only get Curt's left eye to 20/40. Curt needs to continue using eye drops in that eye. He will get his new lenses when we return from our next trip. Curt played tennis (singles) yesterday and will play doubles at noon today. He also hopes to play coed softball Sunday before we go to Angie's. Angie and the girls are coming down tonight and leaving tomorrow night. Angie has been able to pick up Curt's images on a CD and will pick up some more of his medical records from OHSU today. We will take them with us to UCSF on Monday. Curt has an appointment with a doctor there on Monday afternoon for a second opinion. On Tuesday we will fly from there to Chicago to see Beth's family, our brothers, etc. We are looking forward to seeing our grandsons play baseball and soccer. We return from Illinois on June 21. On June 23 Curt has an appointment with Dr. Chui at OHSU.

France to Germany

2008-06-01T07:46:00.000-07:00

Here we are at the Schuessler's house in Bonfeld, Germany. We left off on our way to Roussillon (sp.), France. We spent the night in this town where there is a lot of red rock (ochre). It reminded us of Sedona, AZ, but more green. We spent the next 2 nights in Nice. There were a couple of accidents on the autobon that delayed us some. We had to change our plans for lunch on the way from Antibes (on the coast) to Grasse. William (our tour guide) gave us a good walking tour of Nice. Our hotel was right across the street from the beach and our room had a beautiful view. The next day Curt and I took a bus to Eze (a town high above Nice) and then on to Monaco (it takes about 45 minutes this way). We looked at the palace and cathedral there and then tried to get back to Nice. The bus back to Nice was full so we tried the train. The first train was also full and passed on. We finally caught a train for the about 15 minute ride back to Nice (however, it took about 2 hours to do this). That night was our final dinner with the group. Most of us had homemade pasta (Curt had veal). Our guide served us champagne on the promenade after dinner and we said our goodbyes. It was a nice group of 28 diverse people.
Saturday morning we flew to Stuttgart, Germany (a little over an hour). We had a little trouble connecting with our shuttle driver to our hotel in Bad Rappenau (about 3 miles from Bonfeld). The Schuesslers' came to our hotel and we walked to a big flower show in a big park nearby. It was warmer in Germany than in Nice (the weather was improving there though). This morning the Schuesslers picked us up and brought us to Bonfeld. We were able to go into the church where the Stutz ancestors were married, baptized, etc., after their church service. We met the Lutheran church's priest and even got to climb into the church tower. After lunch they drove us to Hochhausen (about 15 km) where Conrad Stutz married Katharina Helmstatt (the daughter of a Baron) in 1797. Anne S. had arranged to meet the town historian to let us in the church there. Katharina's father is buried inside the church. I have learned lots of things and hope I can remember them. Anne S. is giving me some written things too. Tomorrow Curt and I might take a train to Heidelburg to visit on our own. Tuesday we head to Frankfurt and home on Wednesday.

Arles (cont.)

2008-05-27T12:00:00.000-07:00

I'm not sure when we will get on the internet again, so I will update our stay in Arles. It rained during the night and after we had supper tonight. It was nice for our walking tour around town this morning. A local lady led us. Afterwards we all got museum passes to use on our own. We went to an interesting archeological museum with lots of Roman artifacts (statues, mosaic floors, scale models of the old Roman structures, etc.) found in Arles (just recently they found an old head of Julius Caeser from a statue in the Rhone River here), an old Roman ampitheater, and a coliseum that they are restoring. In fact our hotel is right between these Roman structures. We had to park our bus and wheel our suitcases for about 5 minutes to our hotel last night. Curt helped some of the women (including me) carry there suitcases up some stairs. On our walking tour we saw some of the places that Van Gogh painted here. This is the city where he cut off part of his ear. We also did a little shopping. Tomorrow we will stop at another Provence town (Les Baux) on our way to Roussillon for one night. After that we end our tour in Nice for 2 nights.

Arles

2008-05-26T13:35:00.000-07:00

We arrived in Arles tonight. It rained some this morning, but stopped this afternoon. We visited a local winery at noon today and learned how they make. We tasted 3 wines and the owner made us a good lunch. We then saw the Pont du Gard (an old Roman aqueduct) before coming here. We had delicious group meal tonight and got back to our hotel after 10. Tomorrow we have a walking tour of Arles and are on own. We are in Provence with lots of Roman ruins around here. Hope the rains are gone now.

Carcassonne

2008-05-25T12:20:00.000-07:00

We have internet access here tonight, so we thought we write another quick message. We had about a 4 or 5 hour bus trip from Sarlat to Carcassonne today. We stopped for a picnic lunch on a "barge" on the Canal du Midi south of Toulouse (I´m not sure I am spelling these places correctly without our maps, etc.). After we got to Carcassonne, our guide took us on a walking tour of the fortress. It started to rain and rained a lot until after we finished supper about 9 tonight. We are learning a lot about French history and France. In Chinon we learned about Joan of Arc. Tomorrow we have wine tasting, another picnic at a Chateau, will see the Pont de Gard (old) and arrive in Arles for a couple nights. We will finally be in Provence then, but have enjoyed the other parts of France too. Curt could not have the local dish here (casserlout (sp.) - beans, duck and sausage) because of his celiac. Our guide wrote a note about this in French which we show whenever we eat out (which is quite often). When we have group dinners, our guide has already taken care of this. We hope we don´t have any more rain now!

France #2

2008-05-24T04:45:00.000-07:00

Our last day in Paris, we walked from the Louvre along the Champs-Elysees to the Arc de Triomph and went to the top of that. We took the Metro to the Eiffel Tower, but did not go up.
We went to Chinon the next 2 nights and saw inside 2 Chàteaux (castles) and the gardens of another. This will be our third night in Sarlat tonight. On the way here we stopped at Oradour-sur-Glane (?). This is a small village where the Nazis massacred the 642 villagers (including 193 children) on June 10, 1944 and burned the entire village. They left the ruins as a memorial. Yesterday we visited a cave with prehistoric etchins and drawings of animals in the morning. In the afternoon we paddled a canoe 10 K down the Dordogne River. Today is a free day. It is also market day and quite rainy. We were able to have a big load of laundry done for us for 15 Euro. One night we had duck gizzards on our salad. Curt is managing the eating. He has had Cornflakes every morning, plus yogurt, etc. Tomorrow we head for Medieval Carcassonne for one night and then to Arles. The time is going quickly.

Paris

2008-05-18T23:04:00.000-07:00

We had a good flight over and met the Beckers at the Charles de Gaulle airport and took the shuttle to our hotel. We met Reistads there and walked about 5 miles around the 11th District (where we are staying) and the 3rd District nearby. On Friday we took the Metro and train to Giverny (Monets garden). Saturday we went with Reistads to Versailles and came back to meet up with our Rick Steves tour at 5. We ate dinner together that night. Yesterday our group went to Sainte Chappelle (beautiful stained glass), Paris underground museum and Notre Dame. We ate lunch in the Latin Quarter and then went to the Orsay Museum and barely Orangerie (Monet) Museum, and Place de Concorde. Today we are off to the Louvre and on our own. Had some rain. Curt is holding up as well as the rest of us ( we all get tired). Gotta go now.

Travel

2008-05-13T22:13:00.000-07:00

It has been a hectic day today. We finally got packed for our trip to France and Germany tomorrow (May 14). We return on June 4. We also scheduled a trip to UCSF for a second opinion from Dr. Steven Wang on June 9 at 2:45 PM. We will fly down to San Francisco that morning and spend the night. On the next day (June 10) we will fly directly from San Francisco to Chicago. We plan on watching our grandsons play a lot of baseball and soccer while there. We will return to Oregon on June 21. The next Monday (June 23) Curt has an appointment with Dr. Chui at OHSU at 10:30 AM and might start chemotherapy soon after that.

Dr. Gross Phone Call

2008-05-09T17:25:00.001-07:00

We were surprised that Dr. Gross called late this afternoon. He wanted to make sure we knew about the Tumor Board meeting. In a way, he said this is a "second opinion" because a couple other doctors (including an oncologist besides Dr. Chui) had their input. Without a biopsy (which would be very invasive), they cannot say 100% that this growth (which could be residuals from radiation) is cancer, but they all strongly think it is. Dr. Gross knows the doctor at Sloan-Kettering (by first name) and said he (Dr. Gross) is a "product" from there. He thinks they would do the same things he has done. He also reiterated that there is no chemotherapy recipe for this rare cancer (i.e. in this area). It is hard to say whether to start the treatment while Curt does not have any symptoms, because the treatment will probably make him feel worse. That is why he does not have to start the treatment right away. The cancer could just "smolder" there awhile too. Dr. Gross thought it is worth getting another opinion from UCSF. We called UCSF today. They said Curt's information had been forwarded to a Dr. Wong (sp.) there. We left a message at his office that we would like to hear from him before we leave next Wednesday.
When Curt told Dr. Gross to have a nice Mother's Day, we didn't know his wife is expecting their second child that day. We are going to spend Mother's Day (going up there Saturday night) with Angie's family in Lake Oswego and then Curt has a coed softball game in Corvallis later that afternoon.

Dr. Chui Followup

2008-05-07T15:32:00.000-07:00

We finally talked to Dr. Chui again today. After the Tumor Board meeting on Monday, the doctors still agreed that the only thing they can do now is the chemotherapy. It would be up to Curt to decide how active he wants to remain during the therapy. Dr. Chui said the tumor is still very small, and he can probably wait 4 to 6 weeks before deciding. He could set up the treatment in 24 hours. It would take 2 to 3 months or more to see how affective the chemo would be and how tolerant Curt would be of the treatment. He encouraged us to get a second opinion. We have spent a couple hours trying to set something set up. When we called Sloan-Kettering in New York, they said their doctors do not have time to give second opinions to anyone outside their surrounding district. However, our doctor could call one of their doctors to discuss the case on the phone. Dr. Chui did not think this was a good idea. He thinks we need someone to look at the "raw data" of the case and give an opinion. Curt's doctor would be interpreting the information he discussed with another doctor. So Dr. Chui recommended contacting the University of California at San Francisco. We called UCSF and they asked for our doctor to Fax them the information and they would then contact us. So we cancelled the appointment with Dr. Chui on Monday and will wait to hear from UCSF now.
I forgot to mention that Curt is a little shorter than he thought. At his meeting with Dr. Chui on Monday they had him remove his shoes for his weight (156 lbs.) and height (5 ft. 9 in.).

Dr. Chui

2008-05-05T17:42:00.000-07:00

Well, we are still waiting, but it doesn't look good. We picked up Angie at work and took her with us to see Dr. Chui. He was not able to attend the meeting at OHSU last Monday, but plans to attend a meeting at 5 today. He had called Dr. Gross with some questions about radiation and Dr. Gross returned the call while we were there. I guess they had radiated some in the area of the new tumor, so that rules out any radiation. The tumor (or possibly 2 spots) are in a very bad spot - at the base of the skull where the brain stem attaches. This would make operating very risky too. He said there could be cancer in other places that haven't shown up yet and that the cancer returned rather quickly after the radiation. He didn't know we were going to France on May 14, but thought we should go (and get medical evacuation insurance). At this point all they can do is chemotherapy to slow or stabilize the growth. The amount (if any) that they do will depend on what Curt wants to do. The more chem the more it will impact what he will able to do. Chemo is essentially poison. If they gave him enough chemo to kill the cancer, it would kill Curt too. The chemo will also cause nausea, etc. They have some drugs to help with the nausea. The treatment he is considering would be weekly for a half day, and Dr. Chui would like to have it done at OHSU. We can set the schedule. He said that waiting 4 to 6 weeks (after our trip to France) should not make a difference. We asked about a second opinion, and he recommended it. He said Sloan-Kettering in New York is the best in the world (Dr. Gross spent 2 1/2 years there a Senior Fellow). We will wait to hear from OHSU tomorrow before making out next decision. Right now we have another appointment with Dr. Chui next Monday (May 12) at 8:30 AM.

Appointment with Dr. Chui

2008-04-30T16:12:00.000-07:00

Curt has an appointment with Dr. Chui at OHSU next Monday (May 5) at 11:30 AM. He is the oncologist who we hope will tell us about a treatment.
Curt is keeping active. He played doubles tennis on Monday and is going to play singles tomorrow. He might go to the men's softball practice tomorrow too (it will probably be rained out). Last Sunday he went to the coed softball practice. The past couple days he has been busy planting flowers in the yard. He has even gained a couple pounds. He still has some dizzy spells though.
We leave for our Rick Steves Tour of France on May 14 and will return (after spending a couple days in Germany) on June 4.
More after next Monday.

Dr. Gross

2008-04-25T19:02:00.001-07:00

Dr. Gross called late this afternoon. He told us to go to France. He had talked with Dr. Delashaw about operating, and they both agreed it was not worth it. It would be major surgery again and likely not be able to remove all the cancer. They both thought Curt's being light headed and losing weight were signs it was cancer. Dr. Gross is going to bring Curt's case before their board (I forget what he called it) when they meet this Monday. He is also going to have Curt see Dr. Chui at OHSU (who has an interest in innovative strategies to treat malignancies, according to information on the web) before we leave for France. They will probably start chemo therapy when we return. OHSU will set up the procedure and Curt can probably have it done in Corvallis again. Curt should eat as much as he can and keep hydrated. Dr. Gross said this is a moderately progressing cancer, but it can progress at different rates. Maybe it will be stable for awhile. As it progresses Curt could start to feel pain. Dr. Gross said to live life to the fullest.

Bad News

2008-04-20T16:58:00.000-07:00

We were surprised to get a call from Dr. Gross this afternoon about the results from the MRI and PET scan. He thinks (although he is not 100%) the cancer has returned near the trigeminal nerve (which was removed earlier) where the first cancer appeared. He has a message in to Dr. Delashaw (the neurosurgeon) about whether he thinks it is operable. Dr. Gross is not optimistic since they have both operated and radiated twice in that area already. Radiation is not an option because of all the radiation in that area that he has already received. There is no "textbook" chemotherapy for this type (or location) of cancer because it is so uncommon, but they could try something. Dr. Gross is going to talk to Dr. Holland about this. If they think nothing can be done, they will do all they can to improve his quality of life, and we should go on our tour of France. We will wait to see what they decide. Dr. Gross said he would call us on our cell phone this week since we will be gone (the coast 2 nights and at Bakers 2 nights). If we have not heard from him by Thursday, we are to call his office. We will let you know if we learn anything.

March/April Checkups

2008-04-15T16:11:00.000-07:00

On March 17 Curt had his annual checkup with his Corvallis doctor (Wirth) and then had lab work (including an EKG) done a couple days later. After 3 weeks we finally had to go to the Clinic to get the printed results of that. They said everything was okay (i.e. cholesterol of 159).
On Sunday (April 13) we stayed with Bakers' overnight so Curt could get to his PET scan at OHSU at 9 AM on Monday. After that we had an enjoyable lunch with some "old" friends (Jack and Sue Hufford) from Michigan who were in Portland visiting their son. They came to OHSU and we took the Tram down and then hopped on the Max train to downtown for lunch and came back the same way. Curt had appointments with Drs. Wax and Gross at 2 PM. Curt's eye is still bothering him (watering (which requires eye drops) and a little blockage of vision). He had a little trouble at first hitting the softball at practice on Sunday. Dr. Wax also noted the displacement of his jaw and left lip. The removal of part of his jawbone is a big factor. This makes it very difficult for Curt to chew and bite. He also has not regained much (if any) feeling in that side of his face (I guess Dr. Wax grafted a nerve there). I guess one good thing is that the radiation has permanently removed his whiskers on the left side (no shaving). His weight is down to 154 lbs. now. Dr. Wax doesn't want to do any more corrective surgery for awhile. Another "problem" is the hernia in his stomach caused by the removal of some muscle there to be used as filler in his jaw. This could be corrected in Corvallis at a later time.
The biggest concern raised was when Dr. Gross noted a "hot spot" on the PET scan that is near the removed tumor. Dr. Gross pointed above his ear and said it was at the base of his skull. He wanted Curt to have an MRI soon. We could not get in that afternoon, so we returned today at 11 AM for that. While they were doing the MRI, the machine broke down. So it took over 2 hours to get this done. We now have to wait to hear from Dr. Gross. Curt has also had been lightheaded at times - especially while playing tennis or other activities. He quit playing a singles match about a week ago because of this. Right now he is hauling bark mulch for our yard.

Physical Therapy

2008-03-04T13:12:00.000-08:00

We forgot to mention that Curt decided not to go to physical therapy again after today. He has been doing the exercises they recommended at home with stretchy things and a weight for his left shoulder. He is now able to lift his arm all the way up before it hurts a little. He will continue to do these exercises at home now. His eye only bothered him a few times - usually when he does something different. The eye drops help at this time.