Saturday, June 28, 2014

Bike show a huge success

On the way to Snowmass on Thursday we made a wrong turn and our 4-hour drive turned into an 8-hour drive through the most gorgeous scenery you could imagine. So we didn't get to Snowmass until around 8:30 and we missed the Grand Funk Railroad concert. That was a bummer, but it was still a great trip.

We spent Friday cleaning up the bike and getting it ready for the show. And we spent a lot of time looking at all the other bikes. There were a lot of events on Friday but we didn't attend any of them. The logistics just weren't right. The hotel went out of their way to be accommodating with regard to Marshall's need for his wheelchair plus wanting to ride his bike, so whenever he wanted to take a ride the valet guys would rush out and get the wheelchair and as soon as they saw Marshall pull back in, they rushed over with the wheelchair for him. You could not have asked for better service.

Friday night was the bike show. We learned that some of the judges were two Harley reps and the mayor of Aspen, but we didn't know who the others were. The Best in Show award was voted on by all the people who came to the show.  It was fun for me because I was watching the people.  I was sitting close to the trikes and no one knew who I was so I got to listen to all the people coming by to be sure they had the number off of Marshall's bike so they could vote for it.  And people would bring their friends by and say, "You've got to see this bike."  It was cool

Saturday we took a short ride and then Saturday night was the closing ceremonies. The ceremonies were in a large open area that was just grass, dirt and rocks. The wheelchair simply would not roll over this stuff. So three of the bikers (big burly fellows) practically carried Marshall in his wheelchair over to the stage. Unbelievably nice. But bikers are nice people in general.

Marshall's bike won first place in the trike category and then he also won best of show (or Peoples' Choice). It was a great evening. When it was all done, these same burly guys carried Marshall back over to the concrete where I was able to push him again. Marshall was beaming from ear to ear.

Marshall on stage getting his First Place award -- the guys helped him up the steps.

He's pretty happy with his awards!

Poor lighting, but the HOG emblem looks pretty cool reflected onto the wall, doesn't it?

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Tuesday, June 24, 2014

Bike Show

We ran around all day doing errands and having lunch. It felt like a nice normal day. We are both doing our best to keep a positive attitude leading into the next lab work in July.

In the meantime, on Thursday we head up to Snowmass, Colorado, for the Colorado State HOG Rally and Show. He's had this planned (and paid for) for months. Marshall won first prize when he went to last year's show -- let's see what this year brings. No matter what, though, it should be cool to spend the weekend in Snowmass.

And there is also going to be a Grand Funk Railroad concert on one of the nights. I know they are from my "era," but I don't remember any of their songs.

Stay tuned for updates.

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Saturday, June 21, 2014

Digesting this last cancer center visit

When Dr. Flaig told us that the next drug in line for Marshall would be something called Xtandi, he casually mentioned that occasionally "some men fall" while on this medication. He didn't really go into any more detail.

So we looked Xtandi up today and learned that a seizure is the most serious of the POSSIBLE side effects of Xtandi, so if you are on Xtandi you need to avoid any activity that could injure you or others if you were to have a seizure. The percentage of men on Xtandi who have had seizures is something like 0.9% so it is a low number, but you wouldn't want to take a chance.

So that would mean that Marshall would have to give up driving his motorcycle, or the car, or even the ATV.

So we had a conversation tonight about how that would affect his mindset if he goes on that drug. And after we talked about it and hugged some more, he realized it wouldn't be that much different from what we do now. He really doesn't go anywhere without me, so if I was driving instead of him, it's no big deal. But the motorcycle would be tough.

Oh, well, we don't know for sure if that's going to happen, so we're going to put it on the back burner until we go back for the next visit.

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Thursday, June 19, 2014

Today was a downer

The CT scan showed nothing new. But the bone scan showed new activity on the upper spine. I think. Your mind kind of closes down when you see the scan showing a new "lit up" area. The PSA went up from 3.72 to 7.46.

However, Dr. Flaig says that the PSA does "bounce" a bit in some men. He is concerned about all of this, but he says we shouldn't immediately jump to the worst conclusions. He wants us to come back in 4 weeks and get lab work done (especially the PSA) and then 2 weeks after that he wants Marshall to have all of these scans over again. (UGH) If the universe is aligned, these tests will show the PSA has gone back down and that the spot on the bone scan is an anomaly. But at any rate, at that point we should have a handle on what's going on.

But then Dr. Flaig kind of eased us into what the next steps could be. There is another drug called Xtandi. If the Zytiga that Marshall is taking is truly failing, then we will probably try Xtandi. There is one more drug that might be approved very soon for prostate cancer patients called Xofigo, but it's not approved yet.

We asked about chemotherapy and Dr. Flaig said that sometimes three sessions of chemotherapy, each session three weeks apart, kind of "resets" the body into a place where the hormone therapy will work again. He said that's something to discuss in the future.

We went back to the hotel and had a mini-meltdown, crying a little and hugging. Now we are home and it feels good to hug the animals after being gone four days.

In the meantime, here's a picture of Marshall at the dentist yesterday Dentistry has come a long way. This dentist is treating this like artwork. Very impressive.

Sent from Marilyn's iPad

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Tuesday, June 17, 2014

One day down, two to go

Today was the CT scan and the bone scan, so we were at the hospital from about 10:00 to 2:00. Marshall's stress level was much lower than it's been in the past, which was a huge relief for me. And today we were able to avoid the awful side effects of him drinking the contrast medium (a dose of Immodium right before drinking the stuff!).

And because of the chest pain Marshall had on Monday, the oncologist added a little extra bone scan time to the chest area.

We stopped for lunch and came back to the room and relaxed for the evening. Tomorrow is just dentist and psychologist.  And then dinner with Marshall's nephew.

Special messages:
      To Bill Dowell -- I've lost your email address somehow and Marshall and I want to wish you a belated happy birthday.
      To my cousin Tom in Minnesota who has been battling non-Hodgkins lymphoma for five years and is still battling -- thinking of you all the time.  Cancer sure sucks.

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Monday, June 16, 2014

We are at cancer center

This evening, we checked into our hotel across the street from the hospital and we are actually relaxing, which is unusual for Marshall on these days.

This morning before we left the house he had some severe chest pains and I was ready to dial 911 when the pain stopped. Now his chest is just sore, so we think it's just maybe a muscle spasm. I sent the oncologist a message and we'll talk to him about this in more detail on Thursday.

Tomorrow is the CT scan and the bone scan. Wednesday is dentist and psychologist. Thursday we see the oncologist to get test results.

Stay tuned for an update.

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Thursday, June 12, 2014

Back from a fun trip

We are back in Colorado after a great trip to Ohio. Marshall's 50th class reunion was fun. Then we spent Sunday at his sister's house and the whole family showed up (lots of nieces and nephews and great-nieces and great-nephews, etc). Good food and lots of laughs. His great-niece Tammy is like a stand-up comedian. It was great.
I'm not good at family trees, but I believe all of these youngsters (above) are Marshall's great-great-nieces and nephews.

And these (above) are the great nieces and nephews (along with sister Audrey). Tammy is on the left in the front row. I could listen to her stories all day.
And these (above) are the nieces and nephews.

And then there's me and Marshall and Audrey.

When we got back to Colorado we spent the night in Denver so Marshall could see the dentist at the University Hospital. Things sure have changed since Marshall got his first dentures 15 years ago. Back then, they took an impression and then boom, you came back and got the dentures.

This dentist is going to take 5 visits to perfect the impression and then he gets the dentures. We have high hopes that this will work.

Today Marshall saw his primary care doctor at his new offices in Florence, Colorado, so we are back on track with him, thank goodness. Marshall's oxygen levels have been good so for now all he needs is oxygen at night like he's been doing.

And between yesterday and today we have seen 3 scorpions in the house. I will be sleeping with the lights on for a while..... I have read that spreading food grade diatomaceous earth around the house inside and out will get rid of them. I have ordered a 50-pound bag of the stuff.

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Friday, June 6, 2014

We made it to Ohio

We came to Ohio for Marshall's 50th class reunion and to visit his sister and to have a small family reunion.

It was a great test of how well we will get through the airport with him in a wheelchair and with all of his medications. The wheelchair thing worked great -- he got taken to the head of every line and I got to ride on his coattails. So we got through security very quickly.  The girl pushing the wheelchair just kept calling out, "Wheelchair coming through, wheelchair coming through...."

However, my carryon bag got picked out for a thorough check -- I thought it was because it was full of medications, but instead it was because I brought along a can of hairspray and that is a no-no. So we threw that away and were allowed to move on.

I hate to fly, but today's flight was uneventful, smooth and on time. Very little stress.

We got to Detroit, got a rental car and now we are in Ohio all settled in. Tomorrow is the class reunion. Sunday is the family get-together. Monday is a day of rest and Tuesday we go back to Colorado where we will get a hotel in Denver and spend the night so Marshall can see the dentist at the University Hospital on Wednesday. Then we head home.

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Tuesday, June 3, 2014

We have a new neighbor

Well, the thing I dreaded has happened. Someone bought the parcel of land that borders ours, which means that after living a hermit life out here for the past 10 years, we now have a neighbor who will be almost as close as houses are on a city block. He stopped and introduced himself today and he seems like a very nice young man, but that doesn't help.

He owns a coffee shop in Denver called The Amsterdam. I Googled it and it looks like a cool coffee shop. He has purple hair and he travels with two cats (being an animal lover is a plus, I guess).

We live at the very end of a half mile road and that means there is never any traffic up here. But now there will be.

On the plus side, if we ever do have to move for health reasons, it will be much easier to accept.

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Monday, June 2, 2014

Wedding Anniversary

Today was our wedding anniversary (24 years married, 27 years together), so we went out tonight and had a perfect romantic dinner. The weather was really nice so the doors were open, there was live music (a duet playing some nice background music), and the food was incredible.. We had a great evening.

He had a little nausea just as we got to the restaurant but a nausea pill took care of that. I hated to see that happen because he's gone about five days now without any nausea (and very little coughing) ever since I started giving him his pills in the wee hours of the morning so he can go back to sleep while they settle in.

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