Gus with the Old Works Golf Course in the background

Gus, Scott and April

Gus, Scott and April

Scott, April, Kathleen, Gus at the Old Works Golf Course

Golfing on Gus' Dream Course

Last week, April brainstormed and came up with the perfect gift for Gus during his week of no chemo . . . golfing on the "Old Works Golf Course" in Anaconda, MT. She did not know at the time that this was one of Gus' dreams for this summer. He wanted to practice all summer and then golf on the Old Works this fall. It is an extremely challenging golf course designed by Jack Nicklaus. Gus has never felt competent to golf there before.

The room couldn't contain Gus' smile when I told him the plans. The chance to be with three of his favorite people doing one of his favorite things meant so much. Yesterday, the four of us headed to Anaconda. My part in golfing is to always make sure Gus' golf cart stays balanced. Two sides -- two people.

Once again, God orchestrated the afternoon and evening for Gus. The weather was incredible and the chance to be on that course golfing was a dream come true. Gus made a consious effort not to count his golf balls ahead of time so he never had to count how many didn't come back with him. Life is too short to waste on the trivia.

Gus was exhausted when we got home last night, but he was so happy. I was sent an e-mail that quoted a Vivian Green. "Life is not about waiting for the storm to pass . . . it’s about learning how to dance in the rain!" Last night, Gus danced in the rain.

Low Blood Counts

Gus had blood work done here in Sheridan last Tuesday, July 28. The results were then faxed to Bozeman which resulted in the doctor calling us to make us aware of how low the counts were. That is not good. We have never had a call from Bozeman informing us of the results of the blood work. I have had to always call them.

The platelets were their biggest concern. It is very low, but it was slightly lower last November. I was concerned with his absolute neutrophil count which is the white cells that fight infection. It is the lowest I have seen since starting this cancer walk thirteen months ago. Now we have dangerously low levels after only one cycle of chemo. Last year it took an entire four months of treatment to reach these low levels.

This is frightening to Gus because of his wife’s past history of becoming overly protective. He loves crowds of people and I keep him in solitary confinement at home. He is not allowed to find a new wife or home, either!

Golfing at Bridger Golf Course

Gus had an enjoyable day overall yesterday even though the afternoon was spent in the infusion room at the cancer center. He and a very special friend, Gail Fremont, played 9 holes of golf in the morning and then they went to lunch. Gail and Gus worked together 27 years ago in the Belgrade sawmill and have remained close friends through the years.

Gail and Gus have plans of spending many hours on the golf course this summer before Gus has his chemo infusion. We are desperate to find ways to lighten our Tuesdays and we appreciate so much Gail making time on the golf course important. He understands Gus' love of the game. I spent the morning visiting an elderly friend and then I met Gus at the cancer center.

One of our main questions to the oncologist yesterday was what he believed was causing the pain. Pancreatic cancer is one of the few cancers that have pain associated with it because the pancreas is located very close to a network of nerves called the celiac plexus. With a lack of any other evidence, he believes the pancreatic tumor is causing the pain.

The doctor doubled the pain medication that Gus takes in the evening. It has not been keeping him pain free throughout the night like we had hoped.

Gus rested on the way home yesterday and then went to bed and slept most of the evening. This is becoming a trend since he started chemo again. His blood counts are quite low after just one infusion. The absolute neutrophils are the lowest I have ever seen with Gus. The second infusion of each cycle usually affects the blood count more than the first infusion. Gus will get next week off so his immune system can recover and we will be doing blood work here in Sheridan.

On a lighter note, yesterday one of the nurses was giving a tour to a businessman. They were walking through the infusion room. When they passed Gus sitting in his recliner, she commented that this is the patient that saves other patients lives.

No More Being a Part of Haying

Gus had hopes of being able to stack hay bales for others this summer. It would give him something to do and give him a little spending money. We still had our stack wagon and tractor. A couple of weeks ago Gus listened to his inner feelings and decided to sell his stack wagon. He did not want anyone to be vulnerable to him if he was too sick to do the job. Last Sunday he sold the stack wagon and this man will stack the bales for the customers Gus had committed to. As lethargic and tired as Gus was last evening, he was so wise to have taken this step.

Our world is shaken again, but at least we are not dealing with the shock we experienced a year ago.

Golfing With Chemo

It was very difficult to drive to Bozeman. We had no desire to start this chemo walk again. Gus and I brainstormed on the drive to the cancer center how Gus could have the chemo infusion in the afternoon after spending the morning on the golf course...anything to lighten the day and give Gus something to look forward to. We will see how well Gus tolerates the chemo and hopefully we have the opportunity of coordinating his chemo infusions around golfing.

The pain continues to increase in intensity. We were given a prescription of oxycontin to try and control the pain better. With this new medicine, Gus will not have to get up during the night to take pain pills. Oxycontin is a long acting medicine so it will last for 12 hours. It will not take effect as quickly, though, so Gus will have to be more proactive and not wait until the pain starts to take his pain pills.

The CA 19-9 blood test taken last Tuesday in Bozeman was 70. The previous one taken from the same lab on June 2 was 41. The tumor marker is rising which makes Gus' decision to start chemo and not wait any longer a very wise choice.

Gus' Saving Moment

Last Tuesday was uneventful in the chemo infusion room other than Gus being a large part of saving an elderly woman’s life.

She and Gus were the only ones on one side of the infusion room. He was laid back trying to go to sleep when he realized she coughed and sounded odd. He sat up so he could check on her and realized she could not breathe. She was having an allergic reaction to her new chemo. The nurses were dealing with another patient having a blood transfusion and so they were preoccupied and nowhere close. There is a reason God gave Gus a loud voice when needed. Within seconds, he had the nurse’s attention and within minutes the room was filled with doctors and nurses doing immediate rescue procedures.

After the excitement had died down, the oncologist looked at Gus and offered to put Gus on the payroll. Two hours later we walked out of the infusion room beside this elderly woman. She was unsteady on her feet, but very appreciative to Gus.

Starting Chemo Again

Gus’ pain continues to get worse each day. Gus called the oncologist and all of us agree that it can only be the cancer that is causing the severe pain. The tumor has to be growing again. Gus will start his chemo tablet this Saturday and we will go to Bozeman next Tuesday for his chemo infusion. Once again, it will be two weeks of chemo and then one week of rest so the immune system can build itself back up. It will be the same routine that Gus followed earlier this year.

Gus had wanted to golf some time this week, but he does not even feel well enough today to try and go golfing. Gus and Lane golfed after the CT scan a week ago. Gus played very competitively even though he was in pain. It amazed me he could do so well when he felt so bad. Now, I am very glad he took the time that day.

Meeting With the Doctor

We met with the oncologist at the Bozeman Cancer Center this morning. He studied the CT scan, examined Gus thoroughly and spent time discussing Gus’ scan with the radiologist. The CT scan did not show any noticeable changes in the tumor, the liver looked clean and the lungs looked good. The only thing that the doctor saw that concerned him was fluid in the pelvic area. He had no clue what had caused it. The oncologist did notice that Gus has diverticulitis disease, but he did not feel that it was the source of the pain.

The oncologist wants to see Gus in three weeks hoping that during that time frame, something will manifest itself so we know what we’re fighting. We will have blood work done in Sheridan prior to meeting with the oncologist July 28.

Gus has no appetite so weight loss will quickly become a major factor again. Nothing appeals to him to eat. Except lemon pie!

Gus slept most of the way home from Bozeman and he went to bed as soon as we got home. Gus has to be sick to sleep during the day. He started taking his narcotic painkillers today. He hates to take them, but that is an excellent indication of how serious the pain is.

The day was disappointing because we received no answers for why Gus is experiencing the pain, yet it was encouraging that there are no obvious signs of active cancer. The doctor is very concerned which we appreciate. He mentioned that we might need to start the chemo again. We are not surprised.

Not Feeling Good

Gus has not felt very good lately. Eating has lost its appeal and as a result, Gus has lost almost 5 pounds. The CA 19-9 blood work taken in Sheridan last Tuesday, June 23 was 61. Their normal range is 37. The CA 19-9 has continued to rise since April 28th when it was 31 with Bozeman's levels of normal being 50. Gus has been experiencing pain in his abdomen and this morning he woke up to extreme back pain. We decided this morning to call the doctor and get the CT scan moved up instead of waiting until July 14. Gus will do a CT scan in Dillon in the morning. We do not know yet when we will see the oncologist for the results. Gus and I both wished we had more faith in CT scans than we do.

To keep all of this in perspective, Gus is doing more physically than he has since getting sick a year ago. He is in the process of painting the inside of our home and yesterday painted the cathedral ceiling in our living room. That would give any of us back pain. All the questionable signs we are seeing with Gus could have logical reasons. We just want to be on the cautious side if the cancer has become active again.

Throughout this walk, Gus has truly tried to live outside the darkness of cancer. That is why he has seized his moments every chance he got. He pushed himself on his golfing trip; he pushed himself on his walk in the Relay for Life, and he is pushing himself on painting. All of these were things he did not need to do, but things he wanted to do. Gus is an example to all of us on how we should live.