No Progress

Not much progress has been made on the manure spreader. Gus just has not felt well enough to go outside. He has put on a substantial amount of weight but not because of his eating. Gus is retaining fluid. After starting on Lasix, he has been able to drop 7 pounds. I know there are still several more pounds to lose before he is at his true weight. His ankles and feet still have swelling.

Gus has no appetite. He does not skip meals; he just does not eat very much. Nothing appeals to him. The pain is steadily increasing. With the pain medication that Gus is on, though, it is fairly easy for us to keep the pain controlled.

It is not unusual for Gus to take a lengthy nap in the afternoon. It’s been 2 ½ years since radiation. That was when Gus would go back to bed during the day to rest. Sleeping in his recliner has been his preference until just lately.

We have finally activated Hospice. For two months, Gus has been on Home Health so the same nurses will be coming to the house; they are just able to offer more services with Hospice. They will continue to monitor his blood levels and check his vital signs.

TJ, Gus’ oldest son, is talking about flying to Montana for a week-end. I am going to try and talk him into bringing his tool belt with him. I think it will only be right for Gus’ kids to spend the week-end putting the manure spreader back together.

It would definitely be a labor of love at a time when Gus really needs an emotional lift. Nothing would make him smile more than watching his kids have to reassemble something he disassembled.

Progress Report

Gus was very disappointed that not one of his friends commented on his life being centered around spreading manure. What are good friends for if not to ridicule?

As you can tell by the picture, Gus has been busy dismantling his project. I found a manual on e-bay for the manure spreader. It will really be useful once Gus starts the assembly. The new wood has already been delivered and is sitting in the shop ready.

Our trip to Fairmont was enjoyable. Gus did not feel well the Saturday that we drove there so once we arrived, he went to bed. He did feel good enough to enjoy our family dinner that night celebrating Lane's birthday.

Last weekend we drove to Missoula to attend April's grandfather's funeral. He passed away Monday January 24th from hyperthermia. Ron had dropped his daughter off at the airport and had only a few miles to drive to reach home. Somehow he became disoriented and drove into the mountains instead. The mountains in winter are not very forgiving for an elderly man, lost with no cell phone coverage.

We had never met April's grandfather, but you could tell by the outpouring of love at the funeral that he was a very loved man with the community as well as his family.

Gus' New Project

Gus' New Restoration Project

It is the old 1940 New Idea manure spreader that was up at my grandparent’s old homestead. Gus and Scott moved it down to Gus’ shop ten days ago. Restoring it has been Gus’ desire for years . . . long before we started working on the old homestead.

The manure spreader was the first piece of equipment my grandparents bought new. Of course, it was pulled by a team of horses. My aunt Virginia tried to tell us that she was sure the main color had been green. I want you to look closely at the picture and tell me where the green is. Well, today Gus dismantled enough to actually find the original color buried deep inside the metal parts. You guessed it. It is green.

Throughout our walk of restoring the old homestead, Gus and I have been continually amazed at Virginia and my father’s ability to remember details from seventy years ago. This is just another example.

Gus still has good days and poor days. His coumadin levels have seemed to stabilize finally so we will only do blood work every two weeks.

Our biggest opportunity is pain management. Dr. Madany came and checked on Gus last Wednesday. He increased the daily dose of pain medication. Instead of taking the long term every twelve hours, Gus now takes it every eight hours. The breakthrough pain is very minimal now and Gus has been sleeping great at night.

Tomorrow the family is headed to Fairmont Hot Springs to celebrate Lane’s 7th birthday. Scott, April, Lane, Lane’s friend, and Lindsey will spend many hours in the pool and on the waterslide. Gus and I will spend many hours watching. We will only be gone one night. It is too hard on Gus to be away from his warm, soft bed and all of us have to work Monday morning.

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.