Back Home

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

Stinky Snot

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

Schaumburg, Illinois

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

Blood Transfusion

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

Treatment #8

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

Dr. Chui

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

Ear Pain and Dr. Gross

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

Good or Bad News?

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

Treatment #7

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

Dr. Chui & Treatment #6

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

Dr. Gross & MRI

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

Treatment #5

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

Treatment #4

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

VERY Good News

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

Change in Schedule

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

Third Chemo Treatment and Good News

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

Chemo Treatment 2

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

Port Operation

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

Followup

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

Chemotherapy

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

Bad News

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

Change in Plans

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

Dr. Dailey, MRI & Dr. Gross

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

Annual Checkup

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

Dr. Downs

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

Dr. Downs

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

Day After Surgery

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

Surgery Complete

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

Beginning Surgery

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

OHSU Visit

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

The Next Operation

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

January 6

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