Appointments on the 6th

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

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

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

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

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

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

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

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

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

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

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

Good Summer

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

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!

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

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

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

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

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)

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

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.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Dr. Gross & Happy 65th!

Today is Curt's 65th birthday. He saw Dr. Gross yesterday and got to use Medicare and his new supplemental insurance. While waiting to see Dr. Gross, Drs. Wax and Gannon stepped in to see him. I asked Dr. Wax about when he might do surgery on Curt's mouth since we were trying to make plans for the summer. He said it would be good to wait until after summer if Curt can tolerate it (he has no pain, but eating is still slow). One good thing is that Curt is eating more "solid" food now. He finally went back to his dry cereal in the morning this week. They might do the eyebrow lift earlier, if needed, since that is minor surgery. The longer they can wait for his face to "settle", the better. Dr. Gross thought Curt looked much better than he did in the middle of January. I think our 9 days in Arizona might have helped. Curt mentioned some hearing loss in his left ear. Dr. Gross removed some wax, but said the ear canal will be different now and there is probably still some fluid that might go away later. He wants Curt to have a PET scan (whole body) 3 months after the radiation ended. So on April 14 Curt will have the PET scan in the morning and see both Drs. Gross and Wax in the afternoon.

Dr. Wax Followup

We saw Dr. Wax this afternoon for the followup on Curt's eye surgery last Tuesday. Curt is happy he does not have to put drops in his eyes all the time now. He only put some in a couple times this past week. Curt's only complaint with the left eye now is that his upper peripheral vision is slightly blocked. When Dr. Wax pulled up his eyebrow that helped. However, Dr. Wax said he does not want to do surgery on that for another month or two. Dr. Wax also said he can pull up Curt's lip a little to help with drooling, talking, eating, etc. That also needs to wait a month or two. Dr. Wax said he grafted a nerve in the mouth area that is not working yet. He wants to see if it will "take hold" eventually. We were going to see Dr. Gross and Dr. Wax on March 3, but Dr. Wax said he doesn't need to see Curt again until we see Dr. Gross after the March 3 appointment some time in April or May. So we are off to Arizona tomorrow until February 29th.

Eye Surgery

We just returned from Portland where Curt's surgery went well. We met with Dr. Gannon on Monday afternoon and then went to Pre-Admissions. We learned Dr. Gannon is spending his last year as a Fellow under Dr. Wax. We then did a little shopping before going to Angie and Jef's. Tuesday morning we were supposed to be there at 9 with surgery planned at 11. Angie met us there. Curt didn't get called back for preparation until about 10:45 and didn't leave for surgery until about 1:15. Drs. Wax and Gannon were delayed because an earlier surgery took longer than they thought. We were able to stay with Curt while he was waiting. When the anesthesists came to get him, they gave him a shot and Curt doesn't remember much after that. We saw Dr. Wax after 2 as he was leaving the surgery. I think he was at the surgery to supervise and left the "cleaning up" to the other doctors (Gannon and residents, etc.). Dr. Wax said they really pulled up his lower lid, but it would eventually sag again. If this procedure does not work, they will put a piece of cartilidge under the lower lid. He wants to see Curt again next Tuesday. We leave the next day for Arizona and will be staying at Bakers' again Tuesday night. Dr. Gannon thought they would not need to see Curt again until his appointments with Drs. Wax and Gross on March 3. Dr. Gannon also said the one eye drop we were using was more for allergies and said to just use Artificial Tears. So far Curt hasn't needed any drops. I think he has 2 sets of stitches. One is underneath the skin and the other is on the skin on the corner of eye. We are to use Bacitracin on the stitches for about 3 days to help with the healing. They are disolvable stitches. He is not supposed to lift heavy things and generally take it easy for a few days. However, it is hard to hold him down. He was able to leave OHSU about 4 PM. I drove up and they brought him down in a wheelchair. He was able to walk though. He slept a little when we got back to Bakers' and then had some Cream of Rice cereal. His biggest complaint about this surgery is that they stuck a breathing tube down his throat and that has irritated his tongue some more. So he is back to liquids or very soft food again. He had been chewing a little more before this. He felt good enough that night for Angie and I to "let" him and Jef beat us at bridge (quite soundly). I drove home this morning and we stopped for a little shopping in Albany on the way. Finally, after just a few days, the exercises suggested by the therapist in Corvallis has helped reduce the restriction on his left shoulder.

Physical Therapy

Today we went to see the physical therapist about Curt's left shoulder - he has restriction when he lifts his arm. After taking several measurements, moving his arm around, and feeling around the area, the therapist agreed that some of his shoulder (especially in the back which involves some posture) and rotater cuff muscles had atrophied. The therapist gave him a couple stretchy things and we bought another stretchy thing for over the door for Curt to use in exercises at home. Curt has a protruding pouch on his stomach from the operation. When he mentioned this to the therapist, he told him how to reduce this by contracting his stomach muscles while lying on his back with his legs bent in order to strengthen the stomach muscles. Dr. Wax removed some of the rectus stomach muscle to put into his left cheek (this was inserted behind his left ear) to fill in where they removed his facial nerve, etc., during the surgery in September. Curt will see the therapist a couple times before we go to Arizona (assuming it is okay after his eye surgery next week) and then see him a couple times a week until March 21 after we return.

Dr. Gannon

I was going to write this on Monday, but was waiting to hear from OHSU. Curt was supposed to see Dr. Wax last Monday at 3. However, he was in surgery and we saw his associate, Dr. Gannon. Dr. Gannon was part of the operating team but did not recognize Curt at first. He said I looked familiar though. When he remembered Curt, he was amazed at how much Curt's face has "shrunk". He looked at Curt's eye and decided the lower lid should be "tucked up" to meet the upper lid. I thought the lower lid looked droopy. I don't think they wanted to put a heavier weight in his upper lid because it could possibly come down over his eye and obstruct his vision. This will be an outpatient surgery at OHSU. We finally heard from them today to see when this will be. Curt will see Dr. Gannon next Monday at 2 PM and then see the Pre-Operation Admissions at 3. Tuesday he will check into OHSU at 9 AM and the surgery will be about 11 AM. We are going to spend both Monday and Tuesday nights at Angie and Jef's place. Hopefully Curt will be able to golf when we go to Arizona February 20-29. We will have to see about that. Curt will see both Dr. Gross and Dr. Wax on March 3 when we return.

Dr. McGowan plus

We saw Dr. McGowan, and she thought Curt was healing well (and maybe faster than "normal"). Curt thinks his tongue is slightly better, but it could take 6 weeks. His saliva glands are gradually returning and might be the last to fully recover. She (and the dietician) want him to gradually eat more things. He is still mostly on a liquid diet with lots of supplemental drinks. His weight (159.5 lbs) is about the same. His skin is healing well, but Curt still puts on Aloe Vera quite liberally. We will see Dr. McGowan again in 3 months.
Dr. Wax's office called yesterday to schedule a quicker appointment (we had another appointment scheduled for Feb. 11). We will see him on Monday (Feb. 4) at OHSU at 3 PM. Curt's left eye is bothering him more and more. It does not close completely. We are putting in lots of drops and he started taping it shut at night. Dr. Gross's office indicated a doctor might put in another gold weight in the eyelid.
Curt is going to see a physical therapist next Friday for his left arm. It hurts when he raises it above his head. Dr. Gross thinks he needs to build up some muscles in his neck and arm area.
We are seeing Dr. Gross again on March 3. Curt also scheduled an annual checkup with his primary Corvallis doctor in March too.
We are looking forward to a vacation in Arizona from February 20-29!
Joan and Curt

LAST TREATMENT!

Curt had his last radiation treatment today ("only" 33 instead of 35)! They gave him his mask. He only weighed 158 1/2 lbs. and needs to watch his diet for a couple more weeks. It will take a while for his mouth to heal. They were surprised that he was able to play tennis the entire time. He saw McGowan today and will see her again in 2 weeks (February 1). She is going to find a physical therapist for his left shoulder and have them call us.
Joan and Curt

Dr. Gross

Today we went to OHSU to see Dr. Gross (ENT). He said Curt looked good (and "well done" on the left side of his face). He looked in Curt's mouth and saw the sores on his tongue and how "raw" his mouth looked. It is getting very difficult for Curt to eat now. Chewing hurts and is a real chore. He is drinking supplements (like Ensure and Boost) to help maintain his weight (he weighed about 159 lbs.) It will take a few weeks after the radiation for his mouth to heal. His bite will always be off since part of the jaw is missing. It will take quite a while before the "scarring" is done and he can see how the bite will actually be. Curt mentioned that his left shoulder has been bothering him and hurts when he raises that arm when shooting baskets or lifting something. This could be caused by the operation and the removal of so many lymph nodes. We are supposed to find a physical therapist who specializes in neck surgeries in Corvallis and Dr. Gross will write a presciption for Curt to see that person. Curt will work with the therapist to try to strengthen those shoulder muscles. Dr. Gross noticed his left lower eye lid was "drooping" so that the eye does not close well. The eye has been bothering Curt - at times it waters a lot (a sign of dryness). We put a drop in it twice a day to try to help. Dr. Gross wanted Dr. Wax (reconstruction) to look at it, but he was not around. They might have to do another "tuck" to raise the lower lid. So Curt is going to see both Dr. Gross and Dr. Wax in 6 weeks (March 3). In about 3 months they will probably do another PET scan of his body. They need to wait for him to "cool off" (I guess the radiation keeps working for a while after the treatments) before doing this. Anyway Curt is counting down until his last treatment this Friday!
Curt has lost some energy from the radiation but has continued to play tennis - more doubles now than singles. He usually takes a nap in the afternoon. The past weekend he noticed the most loss of energy. The radiation probably was most responsible for this, but some may be attributed to his mainly non-chew diet - soft foods and liquid supplements. Today was a long day - radiation at 8:20 AM and then he drove to Portland. Angie fixed lunch for us and we got to see Maddie and Vega. On the way home we did some shopping and didn't get home until after 6:30. No nap today. We got to see the sun today too!

Joan and Curt