Gus' 61st Birthday Pics

Billie Jo, T.J. and Grayson

Gus and Grayson

Cammie, Gus, T.J. on Gus' birthday

Kathleen's Reflections

I have personally wanted to know when Gus' tumor stopped growing and the healing started. To many this moment would not be important, but to me it was. Half way through the weeks of radiation, Gus and I learned that the radiation could not touch that tumor and stop it. All we could think was why then are we doing this. Gus felt horrible and was so sick. We did not share this information with others because the knowledge was too painful to us.

During the four months of treatment, Gus had his blood drawn for a CA 19-9 test. It is a tumor marker test for pancreatic cancer. The radiology oncologist did his best to discourage us whenever we asked for one to be done. He did not want us to get our hopes up as this is not a very accurate test for some people. Gus had this test done five times. The first time was June 16th and Gus' count was 475. Normal is anything below 37. All through treatment, Gus' counts continued to rise. On October 14th, eleven days after Gus had his last radiation, the fourth CA 19-9 test was done and the count was 604.

The fifth and final CA 19-9 was done on November 4, the day Gus started chemo again. This time it was 254! I went back on the blog today to see what that time frame between October 14th and November 4th held. I want each of you to go back and read what I wrote on November 3rd after Gus had come home from his hunting trip. After he had been on HIS mountaintop.

Dec 30th Update

It has taken an entire week to get an answer from the medical oncologist's office as to our appointment in Seattle. It took getting the surgeon involved today to get a response from Dr. Whiting, the oncologist. There is no opening for Monday or Tuesday, but they could get us in on Thursday, January 8th. Gus will still have the 22 staples removed from the incision on Tuesday. He refuses to wait until Thursday to get the staples out.

Beau will fly Scott, April and myself to Everett early Wednesday morning, then fly all four of us home late Friday or Saturday morning. We have to be home by Saturday night. The four of us have a company prime rib dinner and Gus has every intention of being there.

The surgeon e-mailed me the picture that was taken of Gus' tumor and the official pathology report. Neither one makes any sense to me, but I forwarded them on to T.J. so he could present the tumor picture to his father on his birthday. Today was Gus' 61st birthday.

I apologize that I cannot understand the pathology report and share what it says. It might as well be written in a foreign language. I e-mailed it to my sister and both of us are still at a loss. The important thing is the medical oncologist will have it in plenty of time to read it. I could understand it enough to know that cancer is still present even if it is limited. The battle is not over yet.

Gus has been Sprung

Gus was discharged from the hospital late Tuesday afternoon. 

At the University of Washington Hospital there is a team for everything. The pain team disconnected the epidural, the resident team disconnected the drainage tube from the incision site, and the nurse disconnected the central line. It took two days to get everything disconnected. It was almost comical. 

One of the things we were not aware of earlier is that Gus is required to give himself a daily injection of blood thinner in the fat of his abdominal muscles. Only problem is he does not have any fat there. Needles don’t bother him. He just cannot see what he is doing. If you see band-aids all over his left hand it is because he cannot see where the needle is going.

Doctor Whiting, the medical oncologist will meet with Gus the same day that Dr. Park is seeing Gus again. It will be on Tuesday January 6th. We are excited to meet with Dr. Whiting so soon. 

Dr. Park stopped by just to say goodbye to Gus as we were leaving the hospital yesterday. I think Gus is more than just a patient to him. 

Sunday Update

After visiting with Dr. Park on Saturday afternoon, Gus questioned him about the pathologist statement that he rarely had seen a pancreatic tumor respond to treatment like Gus’. We were wrong. The Pathologist had NEVER seen a pancreatic tumor respond like this in all his years of practice and he is an older man. 

The samples of the tumor are now undergoing very extensive test to see exactly what is present. The test results will take six to seven days. 

My sister, Lynne, made the suggestion that while Gus is in Seattle he should get a 2nd opinion from a medical Oncologist who deals with pancreatic cancer all the time. Dr. Park was in total agreement and he wants Gus to see Dr. Samuel Whiting who specializes in pancreatic cancer. This will mean that Gus will stay in Seattle longer. Gus will be staying with his son T.J. and family. 

Right now it looks like Gus will be dismissed from the hospital on Tuesday. I will bring him back with me to the hotel where we will stay until Saturday. T.J. will then pick us up on Saturday and take me to the Airport and take his dad home with him.

12/20/08 Update - Day after Surgery

To say that yesterday was a frustration is an understatement.

Actual surgery did not start until 5:30pm. I only knew that because the nurse I had met called to say she was going home and who the new nurse was. She said the new nurse would keep me updated. Three hours later I received a phone call telling me they were starting to close Gus up, and the Doctor would come see me.

Dr Park spent at least 45 minutes with Cammie, TJ and I describing what he had seen. The tumor was very large and had encased the major artery and vessels much more than any of the tests had shown. In all probability, it was a high grade tumor.

Instead of just calling it quits, Dr Park chose to chip away at the tumor encasing the hepatic artery and send samples to pathology. A well known and highly regarded pathologist had stayed just to assist Dr Park and his surgical team. To everyone’s amazement the sample had no viable abnormal cells. It was fibrosis, which is just scar tissue.

Twice they sent samples to pathology with no abnormal cells found. The third sample did show miniscule spots. It took a high powered microscope to detect them. The pathologist in his years of experience had rarely seen such a positive response to chemo and radiation.

The goal we had been praying for was a successful, 100% removal of the tumor. This was not possible due to its size and involvement of vital blood vessels and arteries. However Dr Park was very pleased with the dramatic response of the tumor to treatment. There was no advantage to Gus’ well being to remove the part of the pancreas affected or the spleen. It would have jeopardized him at this time. Surgery will never be an option in the future.

The goal now is to get Gus walking and eating so he can go home to heal. Then he will start more chemo in three to four weeks. The exact regiment we will follow will be up to the medical oncologist in Bozeman. Once Dr Park releases Gus he will no longer be a part of our lives.

After meeting with Dr Park last night, Cammie, TJ and I could not even put into words our thoughts. We had started our day knowing that there were two options: The tumor was beyond controlling and could not be removed or there was enough scar tissue to give the surgeon the margin he needed to successfully remove the tumor. We ended the day being told that the tumor was more involved than tests had revealed, but that the cancerous cells were all but gone. What was left was so minute the pathologist could not even say for sure if the spots were malignant.

It was two o’clock in the morning before the nurse had Gus completely admitted to his private room in the Hospital. He and I both got about 3 ½ hours sleep with only two interruptions.

They have had Gus up already this morning. They had him sit in a chair and they stood him up to weigh him.

We’re still waiting to see Dr Park sometime today.

We praise God for what He has done. We look forward to what He has in store for us in the future. We continue to covet your prayers that God’s will be done. Gus is in His hands.

Gus is out of Surgery

Kathleen just called at approximately 10:00 pm.  Gus is out of surgery and in the recovery room. He most likely will not go to ICU. They did not remove any of the pancreas or spleen. They did remove about 70 % of the tumor. There was strong evidence that the tumor had responded dramatically to the chemo and radiation in a positive sense. Gus will go directly from recovery to his room. More details will be posted tomorrow.