Dr. Chui (kidney problem)

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

Dr. Lee (for mouth)

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

Blood Transfusion #2 & Update

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

Treatment #9

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

Back Home

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!