September 30, 2008

What a roller coaster our lives are right now.  There was good and bad yesterday at the doctor's appointments.  Gus had lost 8 pounds in a week.  He is not able to keep anything down that has calories in it.   Part of the weight loss is dehydration so they escorted him to the infusion room and gave him fluids through his PIC line for two hours.   We had so looked forward to this part of the radiation being easier on him.  For the majority of people, it would have been.   With Gus, there was not that dramatic a change in how large the field was that is still being treated.   We are trying a nausea patch that is placed behind the ear hoping to get the upper hand on his upset stomach.  This is easily the fifth medication for nausea Gus has tried. 

 

Gus convinced his radiology oncologist into allowing him to have two radiation treatments this Friday and that would complete his 33 treatments.  Then he convinced his medical oncologist into taking the PIC line out the same day.   We already knew that when radiation stopped, the continuous infusion pump would also be removed.   We hadn't decided what to do with the PIC line, but because of the yeast infection under the dressing, the PIC line needs to go.  The yeast infection was much better, but still an opportunity for us.  As we were leaving Bozeman, Gus did finally ask if I agreed with removing the PIC.   Of course, I agree.  In his defense, he knew me well enough to know my silence while he was giving his presentation to the doctors was my agreement with his decision.   So, Gus will have a tough day on Friday, but he will come home with his freedom.

 

All that is left to complete this cycle of treatment is the three chemo infusions which are done once a week.  Because hunting season occurs in the middle of those scheduled treatments, the doctor decided to not start any of them until Gus is back from hunting camp.   His first treatment will be November 4th, the second November 11th, and the final one November 18th.   A CAT scan is scheduled for November 26th in Bozeman to determine the success of the chemo/radiation.  We will meet the doctor on December 1st for the results of the CAT scan. 

 

Gus will have almost the entire month of October with no trips to Bozeman.   You can only imagine what that means to us right now.   This last stage of chemo is what will affect his blood count so much.  It is a huge relief to me that he will not be going to hunting camp with low blood counts.   Gus and I both know that going to hunting camp is not a practical choice, but for Gus, it is the only choice.  Living every moment to the fullest is of utmost importance to both of us right now.

Yesterday was a difficult day for us. The soles of Gus' feet are starting to hurt from the chemo.  That is one of the side effects we were warned about.  The hospital was running almost an hour late on the CAT scan and then the technician had difficulty getting the IV started in Gus' arm for the scan.  

After the CAT scan, we met with the oncology doctor and he wanted to move the PIC line into Gus' right arm because of the yeast infection on his left.  After 6 days of taking the antifungal medicine, the yeast is worse than ever.  We only have to have that PIC line for two more weeks so we did not want to go to the emergency room and go through that procedure again.    Gus was keeping his composure and co-operating with whatever the doctor wanted to do.  I was not.  It was the first time since starting the 3½ month chemo-radiation treatment plan that I was ready to quit traditional medicine. I questioned the doctor about just discontinuing the chemo infusion so we didn't need that PIC line, but of course he wants to run the full regimen of the 5-FU with the radiation.   

What gave us temporarily a reprieve is the nurses who take care of the PIC line had one more trick up their sleeves.  They have a dressing that allows the skin to breathe under that bandage.   Also Gus and I did our reading last night and discovered that one of the medicines he is on reduces the effects of the antifungal drug.   Our prayer is that between the different dressing on the PIC and not taking his two medicines at the same time, the yeast infection will be controlled and the PIC line can stay where it is.  

Gus realized afterwards just how upset he had been and he just didn't let his emotions surface until we were by ourselves.   We just sat in the cancer unit waiting room for awhile until we both had the strength to face our walk again.  

 

On our way home from Bozeman, we stopped and visited our Amish friends outside of Whitehall.   We realized we needed the simple beauty they could offer us.   After a couple of hours, we came away refreshed and renewed.   It is beautiful to see the love and respect this man has for Gus.  We plan on going back in a couple of weeks for a meal and taking Scott and April with us.  Their boys love to be with Scott and Scott loves to be with them.  One of our fun memories is going to the Amish community dinner and the sons would compete to see who could serve Scott the quickest.   The younger ones had to keep working and taking care of other customers, while the older ones could sit with Scott and visit. 

September 19, 2008 Update

Gus had an appointment with a dermatologist Thursday, September 18th.  The red, angry looking spots on Gus' hands, arms, and the top of his head were pre-cancerous areas reacting to the 5-FU chemo drug.  The doctor conferred with the medical oncologist and they chose to deal with the spots.  The dermatologist spent over 30 minutes burning all the areas.  When I asked Gus how many spots, he replied "too many to count".   In the past, doctors used the 5-FU chemo drug for women with breast cancer and their skin would react the same way.   Also, 5-FU is usually the ointment prescribed by doctors for pre-cancerous spots and is just applied to the skin to kill the abnormal cells.  Partly what we are dealing with is the skin of a redhead that reacts to everything. 

 

Gus also now has a yeast infection under the dressing for the PIC line.  As discouraged as we get with all the opportunities right now, we are thankful for prescriptions that can kill that yeast and for the trained nurse that immediately realized what she was dealing with.  The area on his forearm was just beginning to itch. 

 

The radiology department is performing another CAT scan on Gus this coming Monday, September 22nd.  It is to determine the exact location of the tumor for when they confine the radiation to just the tumor and no longer the surrounding area.  Of course, you would love for this test to show that the tumor is greatly reduced in size and now operable, but only the tests done in Seattle can determine that.  The endoscopic ultrasound is the one that is invaluable for that diagnosis.  The preparation for the CAT scan is what takes the fun out it.  By my estimation, this will be Gus' fourth CAT scan and he knows the routine by heart.

 

Gus so enjoys the members of "His Dream Team" that drives him to Bozeman each day.  Each one has been so uplifting and fun to be with.  I had so many people volunteering to drive Gus that I have never needed to ask the same person a second time.  I do have a few drivers who wanted at least two days of driving Gus.  I have even had to turn some people down because of not enough days left for the daily radiation.   Like I mentioned before, as the cancer walk intensifies, so do the blessings.  We are overwhelmed with all the love. 

Letter to Gus and Kathleen

Dear Kathleen and Gus,
At the risk of demonstrating to everone how scattered and disorganized I am, a year after these pictures were taken, I was trying to file a bunch of pictures. I happened upon these particular ones and had a flash back to your beautiful home in Montana. I thought back to our time visiting and the day we spent riding in the hills where you spent so much time working your stock. I remembered Gus's and Jack's narative as we climbed the wooded hills. Barb asked so many questions about the days gone by and I really got a perspective from ranchers about the land and how one could come to love it. I know you hardly have met me, but I want you to know that I took away from that time a connection that is not easily described. As you spoke about times in those hills when your kids were learning to be cowboys or more importantly learning to be responsible adults, and you described the ache of a missing child, and then the incredible relief of a found one, I came to know what these hills mean to you. Thank you for sharing with me all their beauty from your perspective. I won't forget them or you. Gus, and Kathleen, I know this road you now walk is heavy with burden, but please know that each of us who love you, walk with you and pray for you and think of you every step of the way.                                                 

John Lasher

September 15, 2008 Update

The radiation department was closed last Friday and this Monday for upgrading their computer.  Gus actually had four days of no treatment.  I would like to report that he felt great and thoroughly enjoyed it, but that is not the case.   Saturday we had a full day of vaccinating the calves and Gus was not able to participate or even watch.   He slept as much as possible.  He did join us for moving the cows back to their pasture in the evening.  Gus drove Scott's truck and horse trailer.  For the first time I can remember, we were moving cows in the dark with only the full moon to help us.  

 

Sunday we did get Gus onto the golf course for 9 holes.  Lane, Scott and April joined us.  Gus even birdied one hole and ended up with his best score yet for that course.  His score would have been better, but his chemo pump went off during his back swing one time and let's just say it wasn't one of his best shots.  It is a 3 par golf course which welcomes the grandfather and his 4 year old grandson, so that is where we choose to go.   It was a beautiful evening and Gus enjoyed himself, especially when Lane did so well on the driving range.  Gus did get sick after we left the golf course, so we knew he had tried to do too much.  For Gus to accomplish anything during this treatment time is strictly on his willpower and the refusal to quit.  We were told by the surgeon in Seattle that the radiation would get him down, but until you experience it, you always hope they are exaggerating.  The surgeon was not.   He has 15 radiation treatments left so his last one should be October 6th.   That will be a day of celebration.

 

The skin on Gus' arms, hands and the top of his head is reacting to the chemo.  The skin has angry-looking red patches that are tender to the touch. The doctors are perplexed because that is not one of the side effects of this particular chemo.  If anything it should be affecting the palms of his hands and the soles of his feet.  It is nothing serious, just another irritant to deal with.  

 

The weather is beautiful and the second cutting of horse hay is getting put up with no rain.  That is quite the feat this time of year.   Dave was too busy haying to go golfing yesterday.  We appreciate him so much.   Hopefully by the end of the week, the haying is over.

September 9, 2008

Finally Gus and Lane showed up on the golf course together. Lane loves when his Papa Gus reaches the green and he gets his turn. He is very disappointed when Gus only gives him a "2" on the green instead of "5". We can't convince him that the lower the number, the better you did. Gus loves golfing more than ever now. He is so limited in every other aspect of his life, but he still is strong in his golf game. He struggled Saturday to even get out on the golf course and then he did not feel well enough to take Lane to the driving range afterwards. Fatigue is his constant companion. Pills control the nausea and the pain, but nothing helps the exhaustion. He did enjoy the golfing so it is worth every effort to get him there.

His other constant companion, the chemo pump, is wearing its welcome thin. We have had two different chemo pumps in the four weeks whose alarms go off during the night for no apparent reason. Last night, 3 or 4 times this siren went off in our bedroom. Gus and I are so exhausted; we cannot remember how many times we enjoyed it during the night. After it sounds the alarm, you have to reset it. Not one time has the alarm ever sounded during waking hours, only when you are sound asleep. It is like a naughty little child. It will admit to no wrong doing. The nurses checked the last one we returned and there was absolutely nothing in it's memory to show that it had sounded it's alarm, let alone what the issue was. They are valued at almost $3,000.00, so it wouldn't be cost effective for us to silence it like we would like to. Gus will be calling them today and probably switching it when he is in Bozeman for his radiation.

Yesterday we met with a naturopath in addition to the other two oncology doctors. So much of naturopathic medicine counteracts the effects of radiation and chemo, so we can't truly utilize it yet except to aid in the digestion system and increase Gus' appetite. His weight is becoming a real concern. The funniest part of yesterday was when the social worker at the cancer center was trying to figure out a way to get Gus to eat. One of her suggestions was medical marijuana. It has the least side effects of any of her ideas. The old redneck from Sheridan is still alive and well. He let it be known that marijuana is not an option. Having an appetite and being stoned was not something he dreams of doing. Thankfully we felt the naturopath would have some suggestions which she did.

The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassions, gentleness, and a deep loving concern. Beautiful people do not just happen
Elisabeth Kubler-Ross

September 3, 2008 Update

It has finally happened.  Our house now sits beside a golfing fairway.  Gus outlined on the lawn where he wanted one for Lane to golf on and then I finished mowing it.  He never felt well enough during his three day vacation from treatment to go golfing in Dillon or to even take Lane outside and practice on the lawn.  It was a huge disappointment to him.  Gus had so looked forward to his few days off during Labor Day.   The weather did not co-operate either, so that was the final deterrent for him to venture outside.  Keeping Gus warm since he got sick is always an opportunity.  

 

We learned from the radiology oncologist yesterday that Gus' last 8 radiation treatments should be easier on him.  At that point the radiation is strictly concentrating on the tumor on the pancreas and not the surrounding area.  That definitely helped our outlook for surviving the month of September.