Baseball on Father's Day

Gus pitching a slow pitch to "The Babe"

Wind-up and the pitch

At 62, Gus still loves the game of baseball and throws a mean pitch.

Gus and April have been brainstorming this day for several weeks. When her family came from Missoula for Father's Day was the perfect time. There were 10 of us on the field. We didn't even pick teams. The rules were simple. Anything was acceptable and everyone was a star.

It looked like we were going to get rained out, but God blessed us again and gave Gus a desire of his heart . . . . to play baseball again. Parts of the state were experiencing tornadoes while we played in the sunshine on a beautiful afternoon.

A Victory

Today is a milestone in our lives. Two years ago today, Gus and I received the phone call from the doctor telling us the results of the CT scan. Neither one of us can forget how hard it was to breathe.

The fact that Gus is still breathing is a miracle. In fact he is breathing so well that he has been up since 5:30 this morning getting things accomplished. Last night he was out mowing the lawn at 10:00.

Gus had chemo on Tuesday and felt terrible that evening and the following day. This seems to be his normal response after chemo (whatever normal is). By Thursday he was back among the living and ready to achieve something in his day.

The biggest opportunity we still have is his weight. Gus weighs 16 pounds less than he did at the end of radiation the fall of 2008. He was so thin then. Gus still looks good overall, though, because he forces himself to get out each day. He also is begrudgingly drinking his calorie rich drinks.

Last Tuesday, Gus was finally able to golf before going to chemo. We had met with the doctor in the morning, and then Gus headed to the golf course to meet with his good friend, Gail. They had a wonderful time and a beautiful day for golfing.

Everyone greeted Gus when he went back to the cancer center to ask how the game went. They all take a personal interest in his victories. Nine holes of golf was definitely a victory!

Denver

Mary, Jan, Gus and Dorothy

Katherine and Gus

Gus loved his trip to Denver. He stayed with his sister, Mary. Monday afternoon, his other sister and brother-in-law, Jan and Ray, came from Paige, AZ. He was with his Mom four times. They took Dorothy to lunch on Tuesday, before Ray and Gus spent most of the next three hours lost in the rain somewhere in the Denver area.

While in Denver, he spent time with his nephew, Jeff, and his family. He visited his cousin, Nancy and her husband, Vick. Gus also went to Kiowa, CO, to see Katherine and her husband, Randy. Katherine is the daughter of one of my favorite cousins from Washington.

Gus was able to golf only one time while there. He and Mary went Monday morning. He thoroughly enjoyed himself, but rumor has it, no records were set on low numbers. Gus never felt well enough again and the weather never co-operated. In fact, Denver even had tornados on Tuesday.

The struggle continues for us. Food no longer tastes good to Gus. He lost three pounds in the few days he was gone. Our next step is to start on the calorie rich weight gain drinks that Gus detests. There is a powder that the doctor gave us to try. You mix it with whole milk and get 600 calories in 8 ounces. I will probably gain weight just mixing it for him.

We talked last night of the things we refuse to give up. No matter how hard golfing is on Gus, quitting is not an option. Golf is one of the things he loves. Even if he can physically do only five or six of his nine holes, that is enough. We are going to force ourselves to focus on what he can do, not on what he can’t do.

A Long Overdue Trip

Lane, Gus and LT

Lane kept begging his grandfather to go for a motorcycle ride, so last Sunday they had some fun. They have only gone to the golf course once this spring, due to the nasty weather we have had. Gus can tolerate very little cold.

Gus is flying to Denver this Saturday to visit his mother and both sisters. He will be gone for six days. It has been fourteen months since Gus last saw his mother and sister, Jan. This trip is long overdue.

We were waiting to see how he responded to this new treatment before making plane reservations.

Gus maintained his weight this week and only has a rash as a side effect. The rash looks like teenage acne and only seems to be affecting his face and chest. It was quite the challenge this morning to shave around all those pimples.

Gus is planning on taking his golf clubs to Denver in hopes the weather cooperates.

This morning, we did schedule his next cycle of chemo with golf in mind.Gus will do blood work and see the doctor first thing each Tuesday. He will then go to the golf course and hopefully have the strength to play nine holes. After golfing, Gus will go back to the cancer center for his infusion.

New Treatment Plan

Gus has been on his new treatment plan for ten days now. Nothing drastic has happened with side effects other than weight loss. Gus has lost ten pounds in the last two weeks . . . seven of those pounds in the last week. This has become the biggest concern for everyone involved.

Gus’ appetite is good and he concentrates on eating throughout his day. He is getting so frustrated. No matter how hard he tries, the scales will not reward him.

We questioned the doctors as to why the sudden change with Gus’ treatment plan. The decision was based on Gus’ symptoms April 6th when we had met with our oncologist. We don’t disagree; we just felt the other treatment plan was still very effective and we knew how he tolerated it.

The CA 19-9 taken April 27th was great. It was 58, which is almost in the normal range. We were surprised the positive numbers on the CA 19-9 didn’t have more influence with the doctor than it did. Gus’ other symptoms of pain and fatigue seem to be more of what the doctor is concerned with than what the CA 19-9 shows. I feel so much of the fatigue he is experiencing is because of the narcotic pain killers. He is drugged all the time.

Another note of interest, the oncology pharmacist in Bozeman has been studying reports on the toxicity of the drug given to Gus in the infusion room. She has discovered that the faster it is infused, the less toxic to Gus. So after 1 ½ years of being on this chemo, the last two times Gus has received it, it took only 30 minutes as opposed to 90 minutes. The oncologist also increased the dose because it is the only traditional chemo Gus is receiving now.

The PA we met with on Tuesday worked in a VA hospital oncology department for 13 years. In all that time, she can only remember one patient having pancreatic cancer. They have at least three patients right now in Bozeman being treated for pancreatic cancer.

Changing Treatment Plan

Last week was an emotional time for us. The oncologist was more concerned with the CT scan results than we had realized. Gus met with a young PA for his appointment, so the oncologist came to the infusion room to visit with Gus.

The doctor had already changed Gus’ treatment regimen without discussing anything with us. We were not even aware the insurance had approved the new treatment plan.

Gus will no longer take the Xeloda chemo tablet. He now will be taking the Tarceva tablet. Gus will continue to have the weekly chemo infusions in Bozeman only now he has three weeks in a row before a week of rest. He also will take the tablet every day of the month with no break.

In the past, Gus always has low blood counts after the second infusion. I cannot imagine what the counts will be after a third infusion. Next Tuesday, the 27th, will be the first time starting with the new treatment plan. We are a little apprehensive about how Gus will tolerate something new.

Yesterday, I called the special pharmacy to set up payment and delivery instructions for the new chemo tablet. $12,816.00 was the amount they wanted to put on our credit card!! Even the person I was talking to was shocked. After my brain started functioning again, I realized they were sending a three months supply. I immediately requested only a 30 day supply for obvious reasons.

Gus is excited to see the month of May approaching. The reason is a four letter word starting with “G”. In fact, he won’t let the cancer center schedule him too far in advance for his appointments because everything must be fitted around his golfing. They are only too anxious to comply with their Poster Child’s wishes. That is no joke. He is known as their poster child there at the cancer center.

Through all the ups and downs of this walk, we still know that God is blessing us through it all. We cannot imagine going through this without our faith and our prayer warriors.

Test Results

Gus and I have avoided updating the blog until we knew results from tests. The first CA 19-9 that was done on March 16 was scary. The numbers had almost doubled in the three weeks of no treatment while we went to Mexico.

The CT scan done March 29th showed slight growth in the cancerous mass on the pancreas. Gus’ appetite had disappeared and he was at an all time low with his weight. Gus and I were doing our breathing techniques that we use when trying to control our fear . . . gulping in large amounts of oxygen.

Today we received the results of the CA 19-9 taken last Tuesday, April 6th. The number has dropped substantially. It has gone from 98 to 85. We were preparing ourselves for some bad news. Instead, we got good news. Gus just doesn’t feel well enough today to appreciate it.

Our oncologist is already making plans to change some of Gus’ meds in preparation for Gus getting worse. The hospital is presently checking to see if the insurance will cover a new med. It is Tarceva and there has been mixed results on its effectiveness. It is not your traditional chemo, but it is targeted therapy.

Gus’ appetite has improved in the last week and he has gained two pounds. Gus is back on the narcotic pain meds, though, because of the pain.

The surgeon was planning on putting the port in on the right side of Gus’ chest. He will not put a port in on the side where there has been a blood clot. The surgeon asked Gus as he was leaving the room if Gus was a hunter. You know Gus’ answer.

So the surgeon went against his own rules and put the port where the recoil of the gun can’t touch it. We so appreciated him even thinking of something so important to Gus. The port is working great. It has been used four times.

With all the negative events going on in Gus’ life, he must have decided to end things as painful as possible. The other day he smacked his shin with a hammer. Not just any hammer, but a sledge-hammer. His comment was if you’re going to hit yourself with a hammer, you want to use a big one.

Then last night, he attempted to cut off the end of one finger with his jigsaw. The big boy in this household is about to have his toys taken away.