Just Enjoying Life

Gus has his good days and his less than good days, but nothing as bad as when he was on treatment. Spending time on medical treatments that were doing more harm than good was not what he wanted to do with his time. Quality of life became his focus.

Gus didn't keep all of those 5 ½ pounds on his frame, but he kept a few of them. One of the important things that I have learned is to not pressure Gus into eating if he does not feel like it. The decision needs to be his and his alone how much he eats and when he eats.

The only blood work that is done on Gus now is to track his coumadin level. I have no desire to deal with blood clots, so this is one medication and test I insist on.

There are no more CA 19-9 tests or planned CT scans. Very soon there will be no more scales in his bathroom to track his weight. Gus is getting very tired of knowing how much weight he has lost. I made it very clear that those scales will not be a part of my life. Hide them in the closet was our decision.

Gus spends most days in his heated shop working on his projects. He also spends time splitting firewood using his hydraulic splitter. Gus usually knows he has tried to do too much the day after splitting wood.

No More Chemo

It is time for a change.

Gus continued to decline until last Tuesday night when he decided no more treatment. No more trips to Bozeman. He had enough of chemo. Gus had lost a total of 9 pounds in 8 days. He was taking oral chemo twice a day and each time he took the pills, he could feel himself getting worse.

Gus called his oncologist on Wednesday to tell him his decision. Since stopping the oral chemo, he has gained back 5 ½ pounds. He felt so good today that he spent most of it outside in his heated shop.

Gus’ primary doctor will once again be Dr. Madany in Dillon. He is the doctor who discovered Gus’ cancer so quickly 2 ½ years ago. We spent a couple of hours yesterday with him making plans for the next step in our walk.

We never realized the pressure we were under until it was gone. There was a true freedom for both of us after the decision was made.

Tomorrow Will Be Better

We never did receive a phone call from Bozeman telling us when to come back. I started making phone calls to them on the 10th trying to force the process.

Gus had his first infusion of Oxaliplatin last Tuesday, November 16. It is platinum based and the actual infusion takes longer than the previous chemo. Gus was in the infusion room at least 4 hours. He has been very sick since Tuesday evening. He did not even get dressed the following day which is a first.

One of the toughest side effects of this platinum based chemo is the reaction to cold. Gus can no longer drink or eat anything cold or even cool. He cannot reach into the refrigerator without wearing gloves. This side effect lessens as the body recovers, though.

We are in the middle of a winter storm with temperatures below zero which has really limited us. Gus has not set foot outside since coming home on Tuesday.

The oncologist changed the protocol of the FOLFOX regiment. Instead of Gus coming home with a chemo pump, he takes the oral chemo Xeloda. Gus has taken that before so we are used to the rules and side effects.

This regiment is a 3 week plan. On day 1, Gus starts the oral chemo and has the chemo infusion in Bozeman. He then continues the oral chemo for 13 more days. After 14 days of oral chemo, he stops and has one week of recovery before starting the cycle over again. Our next appointment in Bozeman is December 7th.

Gus is a very, very sick man. He lost 7 ½ pounds from Tuesday morning to Sunday morning. As of this morning, he now weighs 130 pounds.

The CA 19-9 has increased steadily. It was 248 last Tuesday. Since November 2nd, it had gone up 83 points in just two weeks. The pain is increasing also. Overall the outlook is not good.

Gus does plan on feeling better tomorrow and getting back into life, though.

Just Waiting

Last Tuesday was an emotional day for us. It had been two weeks since chemo, but Gus did not feel well the entire day. In fact, it was one of the worst days he has experienced.

The oncologist had not submitted the necessary paperwork for the insurance’s approval so we only visited with the doctor. Gus did not start any new treatment regiment. He did appreciate not having an infusion which would have just made him even sicker.

The doctor wants to start Gus on FOLFOXIRI. It is a chemo regiment for colon cancer. Gus would wear a chemo pump for 48 hours every two weeks. We’re hoping that they will allow me to disconnect the chemo after the 48 hours.

Right now we are just waiting to hear from Bozeman for the next step. Gus has even stopped taking the daily targeted therapy pill.

Gus has spent these nice fall days getting projects done outside. Our place has never looked better.

Last Saturday, Gus and I attempted to get a load of firewood for Scott and April. I emphasize the word attempt. Gus said he has never worked harder for a little bit of firewood. There is a song about “if it weren’t for bad luck; we’d have no luck at all”. That was our theme song for the day.

More Wedding Pictures

Wedding pictures are pouring in from Washington, Colorado and Nebraska. Our day was certainly well recorded and we so appreciate it. We just had to share more of them on this blog.

Gus’ CA 19-9 counts continue to rise. His pain is worse. He has lost almost 70 pounds total. They did a CT scan last Monday and it still is showing nothing suspicious in surrounding organs. Because of the other symptoms, though, the oncologist is not comfortable with staying on this course of treatment. Dr. Hensold does not feel it is effective anymore.

Right now, the cancer center is checking with the insurance to see if they will accept different treatment plans . . . ones that Gus has not tried before. November 2 should be the start of a new chemo regiment.

Because Gus’ pain is increasing and he is chilled all the time, he made the decision to not go to hunting camp. Gus weighs 35 pounds less this year than he did last year, so that was a large part of his decision.

Today is the first time in 26 years that opening day of hunting season has not found Gus standing on his Montana mountaintop waiting for daylight.

The minister of the local Methodist Church asked Gus to share his story. So last Sunday, Gus gave his testimony. He had no notes, just a heart full of love as he stood in that pulpit. This is at least the third church this last year that has asked him to share with them. Each time he speaks, it gets better.

The weaker Gus physically becomes, the stronger his faith is. He has touched more lives in his sickness than he ever did in good health. He is amazing.

Left to right: Billie Jo, Lindsey, Kathleen, Scott, Gus, TJ and Cammie

Front Row: Lane and Grayson

This was two of Gus' grandchildren, two of his sons, and both of his daughters. He has one of his daughter-in-laws in the picture, but we neglected to get a picture of the bride with her new family.

The Wedding

I apologize for being delinquent with the blog. September was the month for serious wedding planning and clean-up at the old homestead where the wedding ceremony took place.

Gus and I were so honored that April and Scott chose to exchange their vows at The Fenton House. A place so special to us. We were blessed with so many friends and family joining us for this milestone in our lives.

Gus continues to struggle with his weight, his lack of appetite, his low energy level and being so cold all the time. His CA 19-9 continues to rise.

He cancelled his chemo the Tuesday before the wedding to give himself more recovery time. That decision really paid off. He was able to enjoy every minute of the wedding with only one time out for resting between the wedding and reception.

We drove to Bozeman yesterday for chemo. Gus had his wedding pictures to show the doctors and nurses at the cancer center. Last night and today he has not moved from his recliner. When I came home from work, he had only eaten two slices of toast all day. By tomorrow he will probably have lost a couple of pounds again.

This picture has a story behind it.

Gus was explaining to me how he has trouble now getting out of his own shadow. As as example, Gus used the walk the three of us did down the center aisle at the beginning of the wedding.

Scott had a mission and was hustling his dad and I along at a fast clip. I saw no problem with the pace of the walk, but Gus is about to collapse at this speed. I thought he was emotional by the look on his face. In reality, he was being dragged along by the anxious bridegroom and was about to beg for mercy.

Gus asked April and Scott several months ago if he could do a Father's Blessing at their wedding. This was a beautiful moment.

Pastor Rob asked Gus if he would like to be the one that introduced Mr. and Mrs. Scott Wuelfing for the first time. This picture is the emotion after that announcement!



Later in the evening, Scott was relaxing with some of his friends. Gus saw the moment and couldn't resist the tempation! Imagine that.

A Transfusion of Blood

Gus continues to get things accomplished even though it is a struggle. He was given two units of blood August 24th in hopes it would help his energy level. His hemoglobin was getting too low. Gus was in the infusion room 7 ½ hours on that day. The transfusion really helped the hemoglobin levels, but it took a couple of weeks to improve his energy.

Gus continues to lose weight. He has lost over 60 pounds now. We appreciate the doctors’ attitudes so much. They know how hard he tries so they don’t harass him about the weight loss. Gus will have to shop in the children’s clothing section for what he will wear to the wedding.

The CA 19-9 that was taken August 17th increased slightly since the previous one. In July, it was 67 and this last time the reading was 76.

The upcoming wedding is our focus right now. You want Gus to get emotional, just ask him about Scott’s fiancé and the joy of knowing April will soon be family.

The four of us, Scott, April, Gus and I, are planning on spending tomorrow working on the site for the wedding ceremony. It looked like a hayfield until Gus brush hogged it yesterday. Now the rakes, lawnmowers, and weed eaters can start the fine tuning. God watered it during the night and I think He plans on watering it again tonight if the weatherman is accurate.

Gus loves a day getting firewood. Kathleen loves a day working at the old homestead.