Last Full Day at OHSU

Yesterday afternoon one of the Oncology Doctors (I think a Resident stopped by) and answered some questions. Curt took the long loop on a walk with me, and I practiced tube feeding on him. Angie left at 6:30 to go on a Girl Scout outing with Maddie. I got back to their place after 9:30.

I rode up the elevator this morning (before 9) with Dr. Chui and his Resident doctor. He was carrying what looked like a donut box and Thermos cup of coffee. We talked a little bit about Curt. Dr Chui and a couple Resident Doctors came by Curt's room later (after 10) and answered some questions Angie (she came after 9) and I had. I was wondering who our doctor would be in Corvallis, and he said it would be the Hospice doctor who could consult with Dr. Chui if needed. He thinks the holes in his mouth are from the tumor which has spread quite extensively like fingers in his head. Curt received 2 more bags of blood today to perk him up for his discharge tomorrow (hopefully by 11). The Bregars visited before lunch. Jef brought the girls here after church, and we all ate in the cafeteria. We all took a walk with Curt after that to a lounge room with a better view of the city and mountains. Another beautiful day! When we got back to the room, the Clems came for a visit. Everyone (except Angie and me) left about 3:30. Angie and I have played some Honeymoon Bridge today. The nurses keep telling and showing me things about his care. The Case Worker (or Discharge Lady) also stopped by. She contacted Hospice in Corvallis and talked to the nurse on call. This nurse called me on my cell phone and will arrange for the Hospice admitting people to meet with us tomorrow afternoon. The nurse today is gathering some feeding supplies for me, and we will probably get more tomorrow. We are still working on getting his liquid medicine lined up.
Right now Beth is flying stand by here on Tuesday morning and Angie will bring her to Corvallis. Jason and the boys will come from Thursday to Sunday (they don't have their tickets yet). Denny (Curt's older brother) and Sandy will drive to Atlanta from their vacation in Florida and fly here next Saturday until Wednesday.
I am running out of battery on Angie's laptop and better publish this. We need to go eat too.

Bad News

It was too late to finish my blog last night. They finally took Curt down for surgery about 5:15. Angie and I were able to go with him to "pre-op". He had to wait in there until he went into surgery about 7:10. The doctor called me about 7:50 to say they were done and everything went well. They were able to put in the feeding tube using a scope. The doctor said to go back to Curt's room and he should be there in about 45 minutes. Well, he didn't get back until around 11 PM. They were waiting for Curt to wake up some more. Angie and I went home shortly after.
I wanted to get here early this morning (got here about 8:15). Curt got up for the bathroom and walked a "half loop" around this floor with me. Dr. Chui and a couple other doctors came in after 10. He said the MRI was hard to read, but they could see the tumor had grown. He looked in his mouth and said there was nothing else they could do. He could also tell that Curt's speech was getting worse because of the deteriation caused by the tumor on the left side of his face. We told him we wanted to return to Corvallis and he agreed. They will make arrangements for us to meet with Hospice in Corvallis on Monday. We told Dr. Chui that Beth's family was coming at the end of March, and he said Curt would be at his best right now. Right now Beth has plans to come next Tuesday. Later Curt said "the tumor won." We are listening to the OSU-Stanford basketball game and the Huffords just arrived for a visit. Another beautiful day outside. I'm not sure I will have much more to add today.

Friday - Part 1

I think this will be a long day so I am going to start a blog now. It is another beautiful, sunny day. I forgot to mention that Curt looks and feels much better. I got here after 8:30 this morning. The surgeon came in earlier to see Curt. They were supposed to operate at 1:30 and he is still waiting to go to the operating room at almost 5. He got back from his MRI last night about 10. This morning he had a little bit of a sponge bath and walked a little to "get things moving". It worked. Angie came about 11 and will stay this evening. Jef has the girls. The nurse said once he goes to surgery, he will be gone about 3 hours. Shortly after Angie arrived, a Pallative Care Nurse came. She spent a lot of time with us. She wanted to know how the cancer has progressed, etc. Then she asked what we wanted to know. Among other things, Curt said he wanted to know what the prognosis is, how it would be, etc. The PN was very caring and informative. They are still waiting for the results from the MRI. Dr. Chui is out of town today, but will be here this weekend. So I don't think we will learn the results until tomorrow. The PN said it is important that Curt feel better after getting the fluids, nourishment, blood, etc. (he does feel better). She said it is also important that it seems the cancer is still in just the head area. They are trying to figure out pain medicine dosages by how many times he uses the morphine pump (I don't think he uses it enough - he says he his pain level is always 2 or 3). They will then prescribe a long lasting pain patch or pill to use at home. She said she thinks he still has time to spend with the grandchildren and thought it would be nice if Beth came to visit while Curt is still feeling okay. If the prognosis is not good, they will refer us to hospice. She had a Resident Doctor come back later with a "pink form" called POLST. It is essentially a shortened Advanced Directive. The Sprechers (Lynda and Steve) came as she was finishing. It looks like we won't come home until Monday. Curt was awake quite a bit this morning and has been sleeping quite a bit this afternoon. I will write more later tonight.

Busy Day

I didn't get to OHSU until 9 this morning. Curt said Dr. Gross had been in earlier. He told Curt they were still considering chemo. Curt had lots of things going into him - fluids, "food" & 2 more bags of blood. They also disolve his medicine and give that through his Port. They put another IV in his arm for magnesium and something else. I think they will use that for his MRI too. Later in the afternoon they started a morphine pump for pain. The Oncology doctors want to get the pain under control. They will adjust the pump dosages as Curt uses it. A Resident Oncology Doctor Lin came in the morning and asked lots of questions and examined Curt. She came back with a colleague of Dr. Chui in the afternoon and ordered the pump. They are waiting to see what they will do next. Some Resident ENT Doctors also came in a couple times and didn't say or do much. The nurses were constantly in and out check Curt's "vitals" and the tubes. Angie was there from about 9:30 to 2:50. She had to take the girls to swimming lessons at 4. Our minister and Angie's minister also stopped by. A Speech Pathologist came and decided it was too soon to work with Curt on speaking and swallowing. Curt said it hurt a little to talk. I think that was mostly because of the feeding tube down his throat. They will stop giving him liquids at midnight tonight so that he can have surgery for a feeding "peg" in his stomach tomorrow. A "Discharge" lady came to talk about feeding Curt at home through this peg. She is going to arrange with Good Samaritin Home Health in Corvallis for someone to come to our house to teach me how to do the feeding "bags". The nurse will also check on the "peg". This will taper off eventually. The Discharge lady said that "Good Sam" doesn't come to the home after 1 PM. So when we leave here we will have to be home by then. That could delay Curt's discharge. We were hoping to leave on Saturday, but are not sure. An Occupational Therapist also came. She was impressed by Curt's strength and how handicap friendly our house is, and said she will "sign off" on him. She wants him to sit down while showering and dressing. Jef came after he got off work. We walked with Curt on a loop around the rooms in this section. The OT said he needs to get up or he might get pneumonia. He also gets up to use the bathroom. His bed has to be on an angle so that the feeding tube will keep the food going down. Jef and I got something in the cafeteria (the food is pretty good) and brought it back to the room to eat. Curt tried to get some rest. The night nurse (they do 12 hour shifts) said they would only do his "vitals" every 4 hours now. They also increased the flow of the "food". They have to see how he will tolerate it. Curt can pick his schedule for eating at home. Some people have the pump going for 12 hours over night and then have day off. I'm not sure about that. They took Curt for an x-ray about 5 o'clock so that he would be ready for his MRI (they have never done this before). They finally came to get him at 8PM for the MRI. I came home because this could take a little while. I hope to get there earlier tomorrow to what is going on.

Change of Plans

We had a call on our cell phone last night saying they could not get the medicine needed for his shot this morning so we did not need to come in. Curt was really complaining about his mouth and said there was some blood. I thought I noticed some blood on the corner of his mouth. I got a flash light and looked way in the back on the left side. I saw a hole in his mouth, some dried blood near his wisdom tooth, and a white spot. I sent an e-mail to Dr. Gross and he answered right back that he was in surgery all day today, but he would see if their Nurse Practioner could see him. They called this morning and said he could come in at 2. After Curt ate his Cream of Rice and went upstairs, he acted like his was going to collapse. I was a little nervous about that and called our friends, the Huffords. They came over within an hour and stayed until we left for OHSU. Angie met us at there. We saw the lady NP who seemed very competent. She asked some questions and looked in his mouth. She was quite concerned and had us look too. There were actually 3 holes. She thought it could be "osteoradio-necrosis" (deteriorating bone from radiation) and a tumor there. You could see some white in one of the holes, which she said was the tumor. She talked to Dr. Gross and they said Curt needed to be hospitalized right away to get fluids and nourishment. Hopefully he would get enough fluids so they can do an MRI on that tumor by his mouth. She didn't think the misery of more chemo would be worth it, but that is Curt's decision. So right now Curt is in the hospital here with lots of people coming and going doing tests, etc. The nurse was able to access his Port right away to start the fluids and take blood samples. Another nurse tried to put the feeding tube through his nose and Curt gagged and gasped for air. She quit and a Resident Doctor came later with a "snake camera" and some numbing substance to help the other nurse. It went down much easier. An x-ray person just came in to make sure the tube was going to the right place. Now they will start nourishment and maybe some other things. They gave him some pain medicine through his Port. A couple Resident Doctors came in earlier to tell us the plan. They will keep the fluids and feeding tube going through his nose until Friday. Then a surgeon will implant a feeding tube in his stomach. They need to watch where they "harvested" his stomach muscle for his operation in 2007. He will need to wait at least a day to see if that is working okay. Then he can return to Corvallis and I will learn how to use the feeding tube. We hope that will be Saturday. There was a discrepancy with his weight. At the ENT office they said he weighed about 139 lbs., but in the hospital they said he weighed about 143 lbs. (which is probably closer). The NP canceled our appointment with Dr. Chui tomorrow morning. Angie went home after 7 and I will go back soon to Angie's and return tomorrow morning. Hopefully Curt will start to feel better.

Weight Loss

When Curt went for his MRI on Friday, they could not do the contrast dye portion because his CRE was up (an indication of kidney malfunction). Because he was dehydrated, they had him get another bag of fluid. We had hoped to leave for the coast in the early or middle afternoon, but didn't leave until after 5. Jef drove our car with Curt and I rode with Angie and the girls. We took Hwy. 30 and got to Seaside about 8. We had the best unit (a penthouse on the corner of the 8th floor) with beautiful views of the beach and ocean. It was a little rainy on Angie's birthday (Saturday) and beautiful and on Sunday and Monday. The girls had a great time on the beach and swimming in the heated outdoor pool. Curt did not do well. He ate and drank very little and was in bed or resting most of the time. Most of his pain was in his tongue. I called a doctor on call at OHSU on Sunday, and she recommended Curt be checked out when we returned to Corvallis on Monday. When we went to our car at WorldMark to leave, Curt rode in a wheelchair (it was a long walk). I took him straight to our Immediate Care in Corvallis on our return around 2 PM. He weighed 143.5 lbs. (a loss of about 4 pounds over the weekend). His blood pressure was really low (106/70 lying down and 98/64 standing). The OHSU doctor implied Curt might need more hydration. The Clinic doctor also thought he needed hydration, so Curt had another bag of fluid. It was a slow drip and took over 2 hours. The Clinic doctor said this was just a temporary fix, and he should probably go to the hospital for intravenous feeding and fluid if he continues like this. Last night we sent an e-mail to Drs. Chui and Gross. I will print Dr. Gross' reply this morning.

"Sorry to hear that you have been having so much pain. It sounds like you have been quite dehydrated. I think we should seriously consider a feeding tube for you. We can discuss more but I am concerned about your trouble eating and drinking.
Unfortunately, there is no easy remedy for this [tongue pain] because it is almost certainly a referred pain. You feel it in your tongue even though the source of the pain is really at the skull base [where the tumor is]. Numbing the tongue probably wouldn't touch the pain."

We finally got ahold of a nurse with Dr. Chui this afternoon. She said he agreed with the feeding tube and would like to have the contrasting MRI. Curt is scheduled for a shot at OHSU at 8:30 AM on Wednesday. This contains an element (iron?) that is okay with kidney failure. It takes 24 hours for it to get in his system. Evidently this is an unusual situation for "parotid tumors". He will then have the MRI at 8:30 AM on Thursday and see Dr. Chui at 10:30. We are headed to Angie's later this afternoon to spend the night (8:30 AM is pretty early to drive from Corvallis).
Curt did eat his usual Cream of Rice cereal this morning and has actually drunk one Ensure so far today.

Dr. Chui (Good News)

We got to OHSU before 10 this morning. They did his blood work first. He weighed 153 lbs. and his BP was 135/85 (about normal for him). Dr. Chui (no Resident doctor today) said the ultrasound of his kidneys showed they were okay. However, his CRE and BUN were still elevated - but less than on Monday. His Red Cells were actually up a little but not quite in the "normal" range yet. They were good enough that he didn't need another transfusion. Dr. Chui asked Curt how he felt (pretty good, although he still takes Excedrin for his headaches) and decided to let him have a reduced dose of Cisplatin (it is hardest on the kidneys). Dr. Chui thinks Curt's problems with the CRE and BUN are because he does not get enough fluids. He also wants him to eat more. We mentioned Curt's doctor at the Corvallis Clinic thought Curt should take some medicine to stimulate his appetite. Dr. Chui thought it was worth a try and gave Curt a prescription. The nurse who took his blood sample did not have trouble with his Port, but 90 minutes later the fusion nurse had trouble and had to use some TPA to open it. While waiting, he got a massage of his feet, hands and shoulders from a volunteer masseuse. It was another nice day. There was fog in the morning until we got past Salem and then a ceiling of clouds the rest of the day with some sun peeking through. We had a great view of Mt. Hood from Curt's station at OHSUand didn't get out of there until almost 4. On February 12 Curt will have another MRI. We will head to the coast with the Bakers after that for the long weekend. On February 18 Curt will see Dr. Chui for the results of the MRI and possibly another treatment. Dr. Chui said to just schedule one more possible treatment after that.
I will post this now and Curt can edit it after the OSU-USC basketball game (on TV) is over. OSU won!