January 30th Update

I received a phone call yesterday from my insurance company.  They will not pay for the chemo if Gus receives the Taxotere.   It is in case studies and the results are promising, but because it is not a standard approved drug for pancreatic cancer, the insurance will not pay.  I asked the insurance representative if the physician who made this judgement call specialized in pancreatic cancer like the medical oncologist in Seattle.  Her answer was to avoid the question.  I did thank her, though, for making sure we knew before Gus started.  It is nothing to have a bill for $3000.00 for one two-hour session in the infusion room.  You can imagine the dollars when another chemo is added to that.  Two weeks of the chemo tablet was $1,720.00.  Thank God for the day the owners of JDL Construction decided to give their employees health insurance.   

 

Gus talked to the doctor today and next Tuesday, Gus will only receive the Gemzar in the infusion room, not both as previously thought.  The doctor is challenging the insurance company to try and get them to approve the Taxatere.  I am sure he will get Dr. Whiting in Seattle involved.  The doctor hopes by the next cycle, they will get approval for all three chemos. The worst that can happen is you just don't take all three.

CA 19-9 Results

Gus' CA 19-9 came back with excellent results. The tumor marker count was down to 86. Lower than we had even dreamed was possible.

Gus did receive his chemo oral tablets in the mail so he will start taking those this Saturday, January 31st. After three days of the oral chemo, he will go to Bozeman to the infusion room for the two IV chemos.

He no longer has any weight limit, so now the work begins. Gus, Brian and myself are working at the old homestead tomorrow setting the rafters on the barn we are restoring. It has been a long 6 weeks for Gus trying to remember not to lift anything. It is just habit to pick something up to move it.

We were reading some of the DON'TS they advise when you're taking one of the chemos. Housework was on the list of things not to do. That hurt. The other day I was looking at my kitchen tile trying to figure out how to make it look new again. The grout looked terrible. So I was on my hands and knees scrubbing with 409 to see if that made a difference. What I had done looked great so I was proceeding to really get serious. Gus quietly mentioned behind me that was something he could do. My hearing was excellent at that moment, so Gus is in the process right now of scrubbing our kitchen tile. He scrubs a couple of rows a day and is more than half way done. I am so thankful he will have that project finished before the DON'TS are appliciable with his chemo. Housework may have been listed, but there were a lot more things not listed.

Both of us are really looking forward to getting something done again. We have been in the idle mode too long.

Gus and I went to Bozeman last Thursday, January 22nd, for the CT scan.  They did blood work at the same time so we should have the results on the CA 19-9 this Monday or Tuesday.  We are anxious to see what that number is.  The last pancreatic tumor marker blood test was done two months ago.

 

We did learn something we had not known concerning the chemo.  We are to be very careful and not touch the oral chemotherapy tablets when Gus takes them.  That is something we would not have thought of.  The likelihood of hair loss is increased this time, so we all might see Gus without a beard for the first time since October 1972.   For many of us, including myself, this will be a first.   

 

Bozeman had not ordered the oral chemotherapy tablets so Gus is not starting chemo this Tuesday, the 27th as planned earlier.  I had checked with the oncologist twice to make sure they had the different chemos that Gus will start using.  Yes, they had what we needed.   They even called us to get everything scheduled.  Well, that was not accurate.   They do not keep the oral tablets on hand.  Those have to be ordered and take at least a week to arrive.  The oral chemotherapy will be mailed directly to us.

 

The oral tablets have been ordered (we think) and if they arrive in Sheridan within the week, then Gus will start Saturday morning, January 31st, with his first pill.  He takes this chemo tablet twice a day for 14 days.  On the 4th day and 11th day of the oral tablet, then we go to Bozeman and have the two IV forms of chemo.  They do not administer the IV's at the same time, so he will have one chemo infused slowly followed by the second one.  They will be observing Gus closely to see how he handles all these chemos in his body at the same time.  If there is a reaction, then they will slow the infusion down even more.  After 14 days of treatment, Gus gets one week with no treatment.  The only thing he will have to do on his off-week is blood work.  They will keep a very close watch on the blood counts.  Then the process starts over again.  Two weeks of treatment, one week of rest.  This is considered one cycle of treatment and he is scheduled for 6 cycles, which will take him into the middle of April. 

 

Neither Gus nor myself has any desire to start chemo again, so we are not half as upset with Bozeman's lack of details as we were when they neglected to send the test results to Seattle in December.  We are half tempted to tell them to take their time.

January 19, 2009 Update

Gus and I met with our medical oncologist last Friday to discuss the options, side effects, and goals for the future. The doctor admitted that he had never given these three drugs at the same time to a patient. When chemo drugs are combined like this, they are given in a lower dosage than when given individually. Thank God. Gus' wish is to start with the three chemos and see how he feels. The taxotere which is the one Gus has never been exposed to before really affects the blood count.

Dr. Hensold agreed that CAT scans are not that accurate in determining the status of Gus' tumor. He feels the tumor marker CA 19-9 is the most accurate test we have for Gus, so that will be a blood test done every three weeks. The regular blood work is done each time before the infusion.

They are doing a CAT scan and the CA 19-9 blood test on Gus this coming Thursday, January 22nd to get a starting point before the second round of treatment. Even though CAT scans don't show the true picture on Gus, the medical oncologist still wants a current one because so much of the tumor was removed during surgery. After the CAT scan, then they want us to meet with a medical person to learn the side effects of chemo. I have a hard time believing they can tell us anything we have not heard or anything Gus has not experienced already. Nausea, weight loss, low blood counts, yeast infections, diarrhea, constipation, hand and foot syndrome, fatigue, chills, pain, dehydration and a reaction to the 5 FU that sent him to a dermatologist for the spots to be burned off. And I am sure I am forgetting something.

We are then meeting with Dr. Hensold Tuesday, January 27th followed by chemo that afternoon. They have warned us it will be a long day. Anytime we set foot in that infusion room, it becomes a long day.

The most important part of the discussion with the doctor, I felt, was the doctor telling us he would not continue chemo if there was no positive proof that it was destroying the remaining cancer cells. He knows how toxic chemo is and the side effects associated with it. If chemo is not making a difference with the cancer, he will encourage Gus to stop. I appreciate that so much.

Gus is still struggling with his weight. He lost 5 pounds in Seattle with surgery and he has lost one or two since coming home. He just doesn't have much of an appetite. He is really going to concentrate on eating several small nutritional meals throughout the day. Gus is walking every day. He only has five days left of injecting himself with the blood thinner and soon he will not be restricted on how much he can lift. What more could any man want.

Gus is finally home

Gus is finally home as of a few moments ago.  He is presently challenging Lane to a board game and I think Gus is losing.  

 

On Tuesday morning, January 6th, Beau Bradley flew Scott, April and myself to Everett.  It was quite the ride.  April and I were oblivious to the fact that we had head winds as strong as 117 miles per hour.  Scott sat in the co-pilot's seat and he knew that the winds were 70-80 miles an hour the entire trip.  Scott was fine, but did feel a moment of tension when he saw the pilot tighten his seatbelt.  Turbulence is too mild a term for what we experienced once we started dropping down to land in Everett.  Gus and T.J. were waiting at the airport and were told we were 1-2 minutes out.  25 minutes later we still had not shown up and now Gus was starting to feel some tension.  The winds just really slowed our trip. 

 

We arrived fine and immediately rushed to Gus' doctor appointment.  Gus had the staples removed and we saw the surgeon.  He answered our questions and explained the pathology report.  We came out of the meeting in shock.  Dr. Park removed Gus' gallbladder and we had not even known that fact.  It is standard procedure when this type of surgery is performed.  The scar tissue would have made getting to the gallbladder in an emergency very difficult, so they took care of it.  It is obliviously an organ that isn't needed.   I had asked about the pancreas and the spleen, but obviously did not ask every question.

 

Wednesday, we borrowed T.J.'s car and drove to Olympia so Gus could see his Aunt Margaret.  It was raining, but was not a concern to us until we got T.J.'s phone call.  The rivers were rising rapidly and flooding was inevitable.  The warmer temperatures were melting the snow and between the snow and the rain, the Seattle area was becoming a disaster.  T.J. was going home to gather our suitcases and move us to a motel in Redmond on the west side of the flooding.  It was vital that we be on the same side as our medical oncologist and our pilot.  Sure enough, 22 rivers flooded and closed roads east of Seattle Wednesday night.  Interstates were closed south of Olympia and east of Seattle.  To our knowledge, T.J. and Billie Jo are still stranded at home in Duvall waiting for the water to recede so they can retrieve their van which is sitting in the parking lot at the Redmond motel. 

 

Thursday morning Scott got the opportunity of driving us into downtown Seattle in driving rain with a borrowed van.  Thank God Scott has a strong heart.  We were very impressed with Dr. Samuel Whiting.  He is a young, enthusiastic doctor.  He is exactly what we had hoped for.  I could never get him to admit that Gus' lack of cancer cells was miraculous, but he did admit he is very pleased with the results.  There was definitely microscopic cancer cells in the tumor samples sent to pathology during surgery.  They were not macroscopic like they would have been when the cancer was diagnosed, but there was still evidence of cancer.   Because the entire tumor could not be removed surgically, the cancer is considered non-curable.  

 

Dr. Whiting recommended a very aggressive approach to treating the remnant of cancer still found.  He gave us four choices.   The first choice and the most aggressive are three drugs given at the same time.  The gemzar and taxotere in an IV form and xeloda in a pill form.  Gus would have 2 weeks treatment with one week of rest.  The second choice is no taxotere, but just gemzar and xeloda.  The third choice is just the gemzar which is the most proven drug for pancreatic cancer and we know Gus tolerates that well.  The fourth choice is no treatment at this time and wait until symptoms appear.  Dr. Whiting recommended the first and most aggressive treatment.

 

This time Gus makes the choice of what he receives.  If the three drugs make him ill, then he can make the choice to receive less or none at all.   Gus is to enjoy life with an illness as part of the scenario, not to let the illness rule his life.  Dr. Whiting will monitor Gus and be a part of the medical team, but he wants the main oncologist who will administer the treatment to be the one in charge.  That will be Dr. Hensold in Bozeman.

 

Gus wants the coming week to be free of cancer treatment.  Then the following week, we will start with a CAT scan and a CA 19-9 blood test to give us an accurate starting point.   For three months Gus will receive treatment followed with another CAT scan and CA 19-9 to check the results.  I would feel better about this if CAT scans were more accurate, but they are not and yet they are the best we have.   Out of the five Gus had previously, none showed how invasive the tumor truly was.  How long Gus continues treatment is up to him.   For the first time since June, Gus makes the decisions.