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