Radiation

Curt has had 12 treatments and has 23 to go. His biggest complaint, so far, is the sore on his tongue. He says it feels like he bit his tongue. A doctor prescribed some medicine to apply directly to the tongue. They also gave him something to put between his tongue and teeth during the treatment. They think radiation is hitting his dental work and affecting the tongue. His eye is about the same or maybe better. He probably will always have to use some eye drops. He has also lost some of his appetite. Chewing is more difficult. Right now he is on a soft/liquid diet because of the tongue. He lost about 3 lbs. this past week. They want him to drink Ensure and Boost and eat more often. Today he complained about soreness on the back left side of his head that has been building up. Because it was a bump, the radiation doctor sent him to the ENT doctor for a possible biopsy. The ENT doctor said it looked and felt like a knotted up muscle. There are no lymph nodes in that area. He thinks a muscle was cut on that side during reconstructive surgery in order to stick in his stomach muscle for filler. The cut muscle has now shrunk back into a ball back there. It bothers him when they put on the mask. He has seen a lot of doctors this past week. The ENT doctor told him he has a rough 3 weeks coming up. He is still playing tennis though.

The Pictures

Pictures of Treatment

I was able to go observe Curt's treatment today. I am going to attach some pictures. Next week he will be able to change to 8:40 in the morning. They said that can be changed for a day if necessary. We made an appointment with Dr. Gross at 1:30 PM at OHSU on January 15. Curt will see the doctor here tomorrow and once a week from now on.

The eye drops seem to be working better. We only put them in twice a day and he hasn't had to use the No More Tears during the day.

Joan

First Treatment

Curt had his first treatment today. The actual treatment took about 15 minutes. They move the machine to "zap" him from 9 different positions and not all the "zaps" were of equal length. (The mask keeps his head in the same position.) They also took some pictures with the mask on. I can still see the mesh impression on his forehead several hours later. He said it is a little uncomfortable because the mask fits so tightly. He also met with a nurse and dietician who told him to use a cream on his face and a mild soap. His mouth might get sore and dry later, and he might have trouble swallowing. He should avoid food with citrus and keep eating softer foods with little roughage (no potatoe chips, popcorn, etc.). He will see the doctor here once a week (right now on Wednesdays).

Right now he is finishing up his second scrapbook with all the old newspaper articles about his sports, report cards, etc. I had a scrapbook on him from his senior year in high school and up through college but didn't do as well after that. He had "inherited" items from his earlier years and some duplicates of mine from his parents and wanted to reorganize all this information. It has kept him busy for awhile.

Joan and Curt

It's a Go

Curt went in for the radiation verification this morning, and they said everything was a go for Monday. His daily appointment is for 11:40 AM for now. They said they would have some earlier times available in the near future. It only took about 20 minutes. I got to see what the mask was like by the impression in his forehead. They said they got the mask a little tight, and he will have the impression after each treatment. Maybe it will "loosen up" a little as time goes by.

He also got a new prescription for his eye today. It was a little spendy - $50 for our share. So we hope it works. Dr. Gross said to continue the aspirin a day even though Curt had an ulcer. Curt will probably see Dr. Gross in the middle of January. We need to see what time the radiation treatments will be for sure before we make the appointment.

Joan and Curt

Verification

Curt finally got a call from SRCC today. They are going to do the "verification" on Friday and start the treatments next Monday. He has been playing more tennis lately but is still not 100%. His biggest complaint (besides the chewing) is his "weeping" eye. He still has some pain in his left shoulder too.

It was good to see some "old friends" (who used to live in Corvallis) in Portland during our "long" Thanksgiving weekend with the Bakers. Curt played tennis with one of them (Bill Bregar, who actually lives just a few blocks from the Bakers). We saw the Clems at Baker's church. Hope everyone had as nice a Thanksgiving as we did!

Joan

New Mask

We are not sure when Curt will start the radiation now. Last Thursday he had to go in and have a new mask made. They wanted his head to be in the exact same position it was in when he had his radiation over a year ago. He also had another MRI in that position. When they made the first mask, they did not have all the information from OHSU. SRCC said they will call when they have everything calculated.

We are looking forward to celebrating Thanksgiving at the Baker house in Lake Oswego with some of Jef's family.

Joan and Curt

The Mask

This afternoon Curt had a mesh mask molded of his face. This will be used to hold his head still during the treatments and have the markings for the radiation. They also took another MRI and will use this with previous MRIs and other data to plan where exactly they will do the radiation. He will not return until November 19, when they will do the actual simulation. The treatments will begin the next day and continue for a total of 35 (over 7 plus weeks).

We both had our Shingles vaccine last Friday and now should be set for a while.

On Saturday, Curt blew the leaves off our roof and from the yard into the street. This afternoon he went for a walk after his appointment. Tomorrow afternoon he hopes to "hit a few" tennis balls with a friend.

Sunday we celebrated Vega's third birthday in Lake Oswego. We also got to hear both girls sing in the Angel Choir at their church that morning. This picture is of Vega combing the "right" side of Curt's hair. His other side is looking better every day!

Joan

October 31, 2007

Curt went to the Corvallis Cancer Center yesterday for his simulation but they postponed it until next week. Dr. McGowan still did not like the looks of the "muscle" behind his ear (which is gradually disappearing). She sent him to Dr. Stevens, an ENT doctor in Corvallis who came from OHSU and knows the doctors up there. Dr. Stevens "stuck a needle in the muscle" and cleaned out some "dried blood" from his ear. He thought the muscle looked okay and didn't find any infection. He did say to keep applying the Bacitracin. I continue to put an ointment in his eye at night and Artificial Tears during the day. The hydrocortisone seems to be working on the sores on this arm and back - at least they are not worse and seem better. He rode his bike to his office at OSU this afternoon for the first time.
We continue to thank you for all your support!
Joan

Dr. McGowan

Today we saw Dr. McGowan at the Samaritan Regional Cancer Center in Corvallis. She actually lives in Portland and commutes to Corvallis 3 days a week. She seemed young, but competent and answered lots of questions. She is still waiting for an MRI and information about his radiation treatment last year from OHSU, but thought the radiation would start in a couple weeks (mid November) and last for 7 weeks. It would actually be 35 treatments over this time. Since there are 3 holidays included in this time, the treatments would go into the second week of January. They don't want more than 2 days between each treatment, so there would be 3 weeks of 4 days of radiation on the holiday weeks. He is going in tomorrow morning for the setup and simulation. They will make a mesh mask for him to wear during the treatments. This will hold his head in place and will have the markings for treatments. Several people are involved in setting up the angles, dosages, etc.
The muscle behind his ear is not healed (still "sticking out" some) yet. We need to apply some more Bacitracin to part of it that looks a little "shiny" (to prevent infection). It could be another week or two for that to "go away" (they want it healed before starting treatments). He has gained a couple more pounds, and the doctor said it is important for him to keep up his nutrition (and not burn up too many calories) so that the radiation can work. She is also going to call our dentist to check on Curt's teeth and have him use a special toothpaste to protect his teeth. He can't shave on that side of his face after they start treatments either, but he will probably lose some hair there anyway. By the end of the treatments, his face will look sunburned on that side.
He also has a sore on his left elbow and a couple little ones on his back. Dr. McGowan called in a nurse practitioner who said it didn't look like shingles, but more like eczema or sores from lying on sheets in the hospital(?). They said to apply a hydrocortisone cream and watch them.

Joan and Curt

Dr. Holland

We just spent a long afternoon at OHSU - most of it waiting to see Dr. Holland. After filling out the paperwork, seeing the nurse (Curt is now "up" to 160 lbs.) and viewing a DVD, we met a Resident Assistant to Dr. Holland. After talking to her, she then took us to an examining room. Our appointment was at 1, and we finally saw Dr. Holland at 3:30. He said the radiation will be tricky. They have to avoid the area they radiated a year ago, but want to get as close as possible to that area. One reason they want to do radiation is that the tumor was very close (~1mm?) to the "anterior margin" (I think this is the area of the carotid artery where they could not take biopsy samples). They will also be radiating around the upper mandible (lower jaw bone) that is up by the ear. They had to remove part of this because of the tumor. Radiation will cause scars there and make it harder for Curt to open his mouth. So after talking to these doctors, Dr. Holland agreed to refer Curt to a radiation doctor in Corvallis he knows. He said she used to work at the University of Washington in Seattle and specialize in ENT radiation. When Dr. Holland called Corvallis, they said she had the day off but would probably agree to do this. So now we will wait to hear from her this week to set up an appointment. We learned there are 5 stages to radiation therapy. The first stage is Consultation - which we will probably have to do again with the Corvallis doctor. The next stages are 2. Set Up; 3. Simulation; 4. Treatment; and 5. Follow Up. Dr. Holland did say the treatment would probably be about 7 weeks. We're just not sure yet when Curt will reach that stage. After stopping at Angie and Jef's for supper, we didn't get home until about 8:30 tonight.
On the bright side, Curt continues to recover well and tries to walk more every day. His eye bothers him at times, so Dr. Gross said to put an ointment in it every night. Last Friday we both got our flu and pneumonia vaccines. Saturday night we went to a 1960's potluck before attending a Kingston Trio concert. Monday he walked to our dentist (over 1/2 mile each way) to get his teeth cleaned. That night he attended a SPRC meeting at church. He has been going to church and some other functions too. Tomorrow he plans on mowing the grass for the first time (we finally have gotten a few days of sunshine, but Gordon Reistad mowed a couple times between rainstorms earlier).
Thanks again for all your support!
Joan and Curt

Dr. Gross Followup

We just got back from OHSU in Portland. Gordon R. came off the driving range to drive us. Dr. Gross cut off the stitches from Dr. Delshaw's incision. The rest of the stitches on the other incisions will disappear. We were happy to learn we no longer have to smother them with Bacitracin or cover the protruding muscle behind his ear. He can actually wash his hair now (carefully) and shave around the incisions (carefully). The best news was that they did not find any cancer in the 45 lymph nodes they removed (I didn't know we had that many and that was just in this area!). The actual tumor was a little bigger than a golf ball (I think that included the tenacles it put out). Curt only weighs 159 lbs. now (I think I have gained his extra). He can actually bend over now but should still take it easy. Dr. Gross is going to set up an appointment with the radiation department at OHSU and start the radiation in about 3 weeks. Once it is set up, he can have it done in Corvallis. Curt will see Dr. Gross again around Thanksgiving. A few months after the radiation, he will have another PET scan.
The reason Gordon drove us at the last minute was because I am not feeling well. We enjoyed our weekend (Friday to Monday) with the Bakers and appreciated the chores they did for us. However, yesterday my throat started to hurt and then later I started to feel congested in my chest. This morning I lost my voice too and decided to go to Immediate Care. I had a chest x-ray because he "heard some things" while listening with his stethoscope. It didn't show anything. He also took a strep swab that was negative. They are culturing another sample for a couple days. Because I am "over 39" and because of Curt, he prescribed a 3 day antibiotic and cough medicine. I need to see my doctor for a followup in a couple weeks. He really thinks I "just" have a virus. I sure hope Curt doesn't get it.
Joan and Curt

Wednesday, October 3

We just got back from Portland. A nurse practioner at OHSU removed the drain from his abdomen. Free at last! She said the incisions and muscle behind his ear look good. We ate lunch at Wong's Chinese buffet in Wilsonville and then looked for an external hard drive for our computer (didn't buy one) at Fry's. Curt slept a little both on the way up and home. He is now resting in his recliner. Luella H. brought us some soup and jello salad before we left this morning. I helped Curt with a shower (neck down) after I played tennis yesterday morning, and he enjoyed visiting with some friends. Judy M. brought him some gluten free cookies from our local GF bakery, and my bridge group brought some beautiful mums which we (I hope Curt) can eventually plant outdoors. We appreciate all the cards and messages we have received too!
Joan and Curt

We both enjoyed sleeping late this morning. We are getting caught up on some things and trying to take it easy today. Curt has started a 1000 piece puzzle. He rests in the recliner when he gets tired. We are going back to OHSU this Wednesday between 10 and 12 to have the drain removed from his abdomen. He will see Dr. Gross at OHSU on Tuesday, October 9, at 1:45. Curt said I could play tennis in the morning. I hope to practice bells Wednesday night for an hour and play next Sunday for both services. Angie's family we be here this weekend for a football game on Saturday and can stay with him then. Gordon Reistad is here now to mow the grass. The rest of the week looks rainy. I need to learn how to use the lawnmower. When I mowed the grass for my Dad, I used a push mower.
Joan

We're Home!

Angie wrote yesterday's blog. We got to see some of the doctors this morning to ask questions, etc. They are leaving his adomen drain in for a couple more days, but took out the last neck drain and the doppler cord on his neck and IV on his wrist. The nurse last night and a different nurse this morning showed us how take care of the drain and his incisions. They gave us LOTS of supplies. He can probably get the drain out this Wednesday. I am supposed to see if our doctor in Corvallis would be available to do that (he has been gone for a while now for medical reasons), otherwise we will go back up to OHSU this Wednesday for that. I need to call OHSU tomorrow about follow up appointments. He can't play any sports or lift anything over 10 lbs. for about 6 weeks. I helped Curt take a shower and get dressed. We waited for his lunch and got a little something to eat too before we left. Angie helped me carry everything to the car. Curt walked to the car but was getting a little tired. We left after noon. It is a rainy day. Curt only slept part of the way home. We got here after 2. I made a grocery run and asked a pharmacist about his aspirin in the morning and Tylenol for pain. I left Curt to go over our mail and papers. Kathleen brought us some gluten free homemade soup for tonight. What great family and friends we have! I still have lots of things to put away.

Saturday

Dr. Gross and team stopped by to see Curt and said he is looking good. He should expect about 7 weeks of radiation starting in about a month. Good news is that Curt will be discharged Sunday mid-morning and head home to Corvallis. Today was spent watching football and relaxing.
Thanks for your thoughts and prayers.
Joan & Angie
(Beth finally caught a flight back to Chicago early this morning)

Friday, September 28

Curt was sitting on the side of his bed eating breakfast when Beth and I came this morning. His appetite is good. He said he slept better last night too. A surgeon came and removed one of the two drains in his abdomen and one of the two drains remaining in his neck. The PT took him up a flight of stairs and he walked several times today. Two speech pathologists came and gave him a few exercises to do with his mouth to strenghthen his lip and bite. He took a little nap after lunch but was up the rest of the day. We played some honeymoon bridge and then the dice game with Beth tonight. Dr. Wax (reconstruction) came by and said Curt could probably go home this weekend. Angie took Maddie and Vega to Day Care and came for awhile before taking Beth to the airport. Beth's plane was supposed to leave at 1:45. However, she called later and said she was bumped from the flight and it didn't look good to get another flight today. So she took the Max and met Angie at her office downtown. Angie then picked up the girls and brought Beth back to the hospital. She is going to try to get the 6 AM flight tomorrow morning. Jef is being nice and taking her to the airport at 4 AM. It was nice to talk to two of our brothers today (Gary was not home).
Joan

Thursday, September 27

Curt made more progress today. He was happiest to get the feeding tube in his nose removed just before supper at 5 tonight. Three ENT doctors came and gave the okay. They also removed one of the drain tubes on the incision on his neck (he still has a couple more). And speaking of supper, he can eat whatever he wants now. We finally got to talk to a dietician this afternoon about gluten free. So he can get a gluten free menu now. He is eating well (they don't serve big portions). Dr. Wax and his associate also stopped. They said he doing well, but probably won't leave the hospital until Sunday or Monday. He still likes to sit in the chair and walk, but says his right foot hurts sometimes while walking. His color is better today too.
Curt appreciated seeing the Reistads today too.

Curt is sitting up in bed watching TV. He sat in a chair a few times this afternoon. The physical therapist came after 5, and Curt did a couple laps without help (we did walk with him) around the ward. So far, he has not had any pain medication, but they cut the major nerve in that side of his head so he has no feelings there. Eventually he should get some feeling, mostly to the eyes. His stomach will probably bother him the most. They cut a good chunk from a rectus muscle in his stomach and attached one end to his cheek (underneath) and the other end comes out behind his ear (quite a bit). They do this because the muscle will shrink a lot and disappear behind the ear and the skin will grow over it. They are giving him antibiotics intravenously at times. He still has a few tubes to get rid of. The main one is the feeding tube in his nose. Hopefully that will be tomorrow because he has started to eat a little. He ate his liquid lunch and dinner, and had some extra ice cream because he has now been cleared for a soft diet. Most of the staff we have met here are ignorant about Celiac's disease. We are supposed to have consultation with a nutritionist tomorrow. I'm not sure if the broths he had today were gluten free, but it doesn't seem to cause him any discomfort if he does eat a little gluten (it does affect him internally though).

Steve Sprecher and Angie's husband, Jef, stopped by to visit. We also had a couple phone calls.

I was just getting ready to finish this, when an ENT doctor came in to see Curt. He is amazed at how quickly Curt is recovering. Curt just went for another short walk and is in the chair again now. We need to head home soon.

Joan

Wednesday Morning

It has been a busy morning. Beth and I got here before 9. A speech and "swallow" person came to evaluate that. She had him drink from a cup and then he got to eat some orange sherbert. After cleaning that up, she had him eat a little fruit cocktail. He liked that too. I think it stimulated some saliva and made his mouth feel better. So they checked with the doctor and he can begin eating by mouth soon. Then an occupational therapist came to evaluate him. She got him out of bed and into a chair. She said he didn't need anymore occupational therapy, but a physical therapist will be in later to have him walk. While he was in the chair, I helped the nurse give him a sponge bath. He hadn't had one since the surgery. He is now back in bed and sleeping (and snoring). Beth and Angie are going to bring me something to eat for lunch.
This is a nice private room with wireless connection. More later.
Joan

Tuesday - Room 22

Curt had a quiet afternoon until the male nurse decided Curt should sit in a chair. The nurse thought Curt was doing exceptionally well. Curt was up for about an hour. At 6:30 we had to leave the ICU. They do not allow visitors from 6:30 to 8:30 during the shift change. We went to the cafeteria for supper and then up to the room he will be in until he leaves. It is Room 22 on the 10th floor of the Kohler Pavilion. The direct phone to his room is 503-418-8322. This is the same area he was in for his last surgery. He finally arrived there about 7:30. The guy who brought him thought Curt was about 50 years old. The nurse and aide checked him over. His temperature was about 100. I don't know if that is "normal" (for post surgery) or bad. Curt said it is hard to talk too much because his mouth is dry, etc. You have to really listen to him a lot of the time. He was glad to get rid of some monitoring cords so he could move more. We will be anxious to see the improvements tomorrow.
Joan

Tuesday - ICU

We finally got to see Curt about 10:30 last night - right after they took him to the Trauma ICU. He was awake (as much as possible) and said he woke up about 8 - which is probably about right. When we left he said he couldn't walk us to the door. His eyes were mostly shut - especially the left one they repaired. The whole left side of his face and neck were somewhat black and blue and swollen. His left ear was completely blue. The incision for the first surgery did not go up as high as last year. The other incision that started at his ear was quite large and went down his neck and under his chin way down on his neck. It really was not that noticeable. I did notice some drainage tubes coming out of it. We only stayed for a few minutes and went home to bed (which felt great). I was tired last night, so that my blog might have a few errors. I think I spelled "graft" like "graph" (must be my math major in me).
This morning Beth and I didn't get here until 9:30. He looked a little better but has quite a bit swelling (including his hands, etc.). I guess they injected quite a few fluids (he mentioned 3 kinds, but the only one I recognized was blood cells). It will take a couple days for those to leave his body. His kidneys are working well though. He had a couple complaints. One is his stomach. His nurse gave him Milk of Magnesia through the feeding tube in his nose. His other complaint (so far) is a dry mouth. His mouth is pulled up on the left side and was more open last night. Not having the big saliva gland also would contribute to the dryness. They are giving him ice chips for that. Angie arrived after 10:30. Maddie and Vega are home today. Jef is taking a long lunch to take them to soccer, will take them to lunch and then take them to one of Angie's friends. Angie, Beth and I are eating lunch now and will return to the ICU. Curt was sleeping quite a bit this morning. He is waiting for a room to become available to move him out of there.
Thanks again for all your prayers and support!
Joan, Beth and Angie

Final Surgery Update

This is the last blog for the day. We are waiting to hear when we can see Curt which should be within the hour. The final doctor for the day came by after 8:30 to say they were done. He said this was a major surgery involving 4 surgeons. It took about 11 hours. Even though the tumor was larger than they thought, they do feel they have gotten all this cancer. The reconstruction surgeons (Dr. Wax had a "fellow" helping him) said they had to graph some nerves to help replace some of the facial ones they removed. They also had to take a good chunk of stomach muscle to fill in where the tumor was. Besides the gold weight they put in his eyelid, they also shored up the lower lid (I forgot how). They also took a suture (under his skin) to keep his passage open in his nose. So there will be some of those scars on his face too. Because the cancer was so deep, it had gone into the facial nerve that goes through his ear. This required an ear doctor (Dr. McMenimam sp.) to clear out the cancerous part and repair that. I guess there is an exposed muscle behind his ear that they will let heal itself. They did not replace the jaw bone because the part they removed was up near his ear. They rigged a "sling" (under the skin) to help hold up the lip. If this doesn't work after a while, they will probably replace it some other way. They have put a feeding tube through his nose that will stay until he can start to eat soft foods. They think he is in good shape for recovery and were impressed he started to wake up quickly afterwards. I think I will not return until about 9 tomorrow morning. Dr. Gross said that would after the change in shifts. I'm not sure where Curt will be then. He is supposed to be in the trauma ICU tonight.

Dr. Gross just came to talk to us after 2:30 (after about 3 1/2 hours of his surgery). It was both good and bad news. The good news is they think they got everything. However, it was more extensive than they thought. It was "centered" in his facial nerve so that they had to remove the whole nerve plus the jaw bone and the parotid gland, where it was also entwined. They also removed the lymph glands since that would be the first place the cancer would go. They won't know for a week whether there is any cancer there, but Dr. Gross thought it looked good. Since they had to remove the nerve and bone, they did not have to make the incision in his chin to get at it. Dr. Gross said another doctor was still removing more bone behind the ear where the nerve was to get to the point where they could see no more cancer. Then Dr. Wax will do a nerve graft to that bone and harvest some of his stomach muscle to fill in. They will probably put a gold weight in his eyelid so that his eye can close. Any surgery that Dr. Wax will do will be over exaggerated so that his face will be puffy for several months. He will also have a crooked smile. It will probably be about 6 PM before Dr. Wax is done. Then Curt will be in recovery and in Intensive Care overnight. They might even keep the breathing tube in over night since this is such an extensive surgery. He will be out of it tomorrow quite a bit too.
It was nice that the Reistads and Steve Sprecher were here when Dr. Gross came to talk to us. I can't think of anything else right now, so I think Beth, Angie and I will ride the tram for a break. The Reistads will keep vigil for us in the waiting room.
Joan

Good News from Operating Room

I just heard from the nurse in the operating room. She said Dr. Delashaw was finished (at least for now). They said they did not find anything from the "frozen" section of the nerve they removed today from where they operated before. They were happy they could unscrew the plate where they attached the skull from his first surgery to get to the nerve for the biopsy(?). So that means Dr. Gross can start working on the tumor on the parotid gland.

Beginning Surgery

I am using Beth's new laptop in the waiting room at OHSU. Curt and I got here before 7 this morning and after "signing in" went to the "prep area". Angie and Beth arrived after 7:30. I got to see Dr. Gross, the anesthesiologist (sp.), the resident neurosurgeon, and lots of other nurses, etc. They gave him something to put him to sleep and took him away at 8:30 and said they probably won't start to operate until about 9:30. The surgery will probably take from 8 to 9 hours. The neurosurgeon mentioned cutting some nerve in his cheek area that would make that area permanently numb. They were hoping this might let the tumor "drop down"? They might also do something that will make his left eye lose it's ability to "water" so he will need drops. He will also have a dry mouth. This is all speculation. We are waiting for a call from the operating room after the neurosurgeon is done. Dr. Gross even mentioned coming to the waiting room during the surgery.
I had a little scare on the way to Angie's yesterday afternoon. The Lake Oswego police pulled us over (I was driving) near some schools near them. They said I was going 33 mph in a 25 mph zone near a school and there were a couple children playing there. I was lucky to get by with a warning. They also told me the speed limit was 25 mph when I turned the corner. Angie had already picked up Beth from the airport by the time we arrived (about 2 PM). She enjoyed her First Class ticket (you even get a lunch). Curt beat us all playing Hearts that night. He was quite nervous going into surgery this morning. We think he is in capable hands and are anxious to get some news. I will write more when we learn something. We are hoping the clouds go away later so we can ride the tram (we were able to get a free pass for that).
Joan

Time of Surgery

We talked to OHSU a couple times today. It looks like we will be able to sleep an extra hour on Monday. The surgeries on Monday are scheduled for 8:30 AM (instead of 7:30 AM), so we don't have to be there until 7 AM on Monday! I guess everyone has to recover from the weekend.

Joan and Curt

Good News!

Dr. Gross called while we were eating supper tonight. He said they did not find any cancer other than the tumor they knew about. So the surgery is on for next Monday!

Joan

Dr. Gross, PET & PAT

Today was a long day, but learned a few things. Angie joined us for most of the appointment with Dr. Gross. He said if the PET scan showed anything, they would not operate but do chemo therapy. However, he didn't think anything would show up. Otherwise the surgery would begin about 7:30 AM on September 24 (Curt has to check in at 6 AM). Dr. Delashaw, the neurosurgeon who did the surgery a year ago will go first. He will cut into the skull at the same place, and possibly go up higher, to check on the place of the last tumor on the trigeminal nerve. If it looks like it has gone into his brain, they will halt the surgery and do chemotherapy. I would not do any good to remove 98% of the tumor and leave the rest (that I presume might have gone into the brain). However, he does not think that has happened. Dr. Gross will then take over and make another incision that will go from about the beginning the other incision (around the middle and in front of his left ear) that would go down about 4 inches onto his neck. He will also come in from the front and make an incision starting at the middle of his lower lip. Depending on where the tumor has gone, Dr. Delashaw will assist with this. They think the tumor (which is about the size of a walnut) is entwined in the facial nerve and his upper jaw bone (near his ear). He can tell (and so can I) that it is pressing on this nerve because his left lower eyelid is drooping and he talks like he has something in his mouth (out of the right side of his mouth). They won't know how much paralysis he will have until after the surgery. Dr. Wax will take over after they remove the tumor. He will take some flesh from his stomach to fill in and have to attach some of the blood vessels from this piece. They might use titanium instead of bone from his leg to replace parts of the jaw bone they need to remove. He will have trouble chewing hard foods when this over. Dr. Gross said the surgery will take all day. Curt will be in intensive care for about a day and in the hospital for about a week (more or less depending on how things go). Angie asked if they have done this surgery very often. Dr. Gross said this is uncommon, but they do similar surgeries about every 2 or 3 months. After the surgery he will need radiation (which could be done in Corvallis).
After seeing Dr. Gross at 10:30, we had to wait for the PET scan at 12:30. They insert a radioactive substance and wait for 45 minutes for it to circulate. Then they took him in a wheelchair (to minimize movement of the substance they injected) to their new scanner in the hospital. We didn't get out of there until almost 2:30. Curt finally got to eat a banana and plum. Then we had to wait until about 3:45 for his PAT visit. They take his blood pressure, oxygen level (she was impressed that it was 100%), did an EKG, asked lots of questions, and took some blood. He can't take anymore Excedrin before the surgery, because the aspirin acts as a blood thinner. He can take his oxycodone. We didn't get out of there until almost 5. We decided to eat in the hospital cafeteria to miss the rush hour traffic. After stopping at Costco in Albany, we didn't get home until almost 8.
Even though all this sounds grim, it does sound hopeful. We hope to hear about the PET scan tomorrow.
Joan and Curt

September 12

We received a letter from OHSU yesterday with all of Curt's appointments. They forgot to tell us he was supposed to have a Pre-Admission appointmnet last Friday (7th) afternoon. Curt called and they said he do that next Monday on the 17th. That will be a long day with Dr. Gross at 10:30, then a speech therapist, the PET scan at 12:30 (he can't eat for 6 hours before that and needs to limit his carbohydrates for 2 days before that), and now the Pre-Admission appointment. His left eye is bothering him a little (watering) and he is starting to talk out of the side of his mouth. However, he continues to be active (tennis this morning, a graduate student's thesis defense this afternoon, and supervising the youth at church tonight).
We are happy Beth will be able to come the day before his surgery (Sunday, the 23rd) and stay until the following Friday. She has become friends with the mother of one of Aaron's friends. This friend works for United Airlines and has offered Beth one of her "buddy passes". It will only cost $88 (I think), and she can choose ahead which flights she would like (if they are available).
Thank you again for all your prayers and support.
Joan

Dr. Wax

We drove to Portland today to see Dr. Wax (the reconstruction surgeon). He said he did not know how much reconstruction he will need to do until after they get in his head and see if (and where) the tumor might have spread, etc. It sounds like they might enter from the back of his head. He will take flesh from his stomach, if needed, and bone from his tibula (?) on his leg, if needed.
Curt talked to a guy from Corvallis (John Morris) who had similar surgery on cancer in his parotid gland a few years ago. He also had Dr. Wax for reconstruction, and had 8 weeks of 5 days a week radiation treatment following the surgery. The worst part was the shingles he had afterwards. John was just leaving for 2 1/2 month vacation in Europe yesterday. We don't know what will happen with Curt afterwards.

September 5

We enjoyed the past few days with family. Angie's family came last Thursday for the first OSU football game (we won!). The next day we went to the coast. Angie and the girls then stayed until Saturday. Sunday we picked up my cousin and his wife from Phoenix (Terry and Susan Rapp) in Portland. We showed them the Columbia Gorge and drove around Mt. Hood. The next day we went to the coast (and finally saw the ocean after the fog lifted). Yesterday we showed them Corvallis, stopped at Angie's, and went to the Rose Garden in Portland before taking them to the airport.

OHSU called today to say they have scheduled Curt's PET scan on the same day (Monday, September 17) that he sees Dr. Gross. He will see Dr. Gross at 10:30, a speech therapist at 11, and have the scan at 12:30. He has to limit his carbohydrates for 2 days before and can't have anything to eat after 7 AM that day. This Friday he is going to see the reconstructive surgeon, Dr. Wax. He has been feeling okay except for the pain by his ear. He is taking oxycocone and Excedrin for that and does get tired at times. I did some of the driving while showing Terry and Susan Oregon. Today he played tennis this morning and is golfing 9 holes later this afternoon.

Thank you for all your prayers and support.

Joan

Surgery Date

We talked to OHSU today and learned the date of Curt's surgery will be Monday, September 24. He is going to see Dr. Wax (reconstructive surgery) at 11:30 on Friday, September 7, and see Dr. Gross on Monday, September 17. They will schedule a PET scan one of those days, and he might see another doctor too.

We had a great time at the coast yesterday - climbed sand dunes, ate a lot, and visited. Curt finally got a refill for his oxycodone today, but had gotten by with Excedrin for Migraines (not as potent though). Today he played singles tennis at 10:45 followed by doubles until about 1:30.

New Blog

I am trying to set a blog to keep everyone informed about Curt. This is a trial message. I will add more information after we hear from OHSU about a firm date for his surgery (currently scheduled for September 26). We are going to Honeyman State Park on the coast for the day tomorrow to spend time with our church group that is camping there for 3 nights. The Bakers are coming on Thursday for OSU's first football game and will stay a couple days. On Sunday we are picking up my cousin from Phoenix in Portland to show them Oregon for a couple days. We babysat for Maddie and Vega from Friday to Sunday and had fun at the park.



Thanks for all your support.



Joan