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Monday, December 30, 2013

Christmas in St. Louis

This was one of the best Christmases ever. We had such a good time. My daughter Tricia hosted all of us and we spent two days with lots of good stories, good food and LOTS of healing laughter. Today my sister Linda and I drove over to Freeburg, Illinois -- where we grew up -- and drove around town looking up the house we spent 20 years in, as well as friends' homes, the malt shop, etc. etc. I hated to see this weekend end.

When I get home, I will post the group photo (it uploads better from my laptop than my iPad) but for now here are a few photos.

My brother and sister-in-law gave us all "miners" flashlights that you wear on your head! This is my sister Linda and my son-in-law Ed.

                     
            Daughter Tricia with her headlight:


Marshall got a West Virginia gnome, along with some 3D movies and popcorn.


My niece Margaret with her daughter (my great niece) Ellie. Ellie just turned 3 so this was SO much fun.

                         Ellie got a big pink elephant.

My brother also gave us strobe flashlights and we had a light show on the ceiling.




-Posted from BlogPress on Marilyn's iPad.

Thursday, December 26, 2013

Happy Holidays

We had a lovely Christmas -- went to dinner at a neighbor's house and had a great evening.

This morning our house sitter showed up at 7:30A and we hit the road at 8A on our way to St. Louis. We stopped for the night in Salina, Kansas and are kicking back and relaxing before finishing our journey tomorrow.

The trip is going really well. Marshall hasn't had any pain and his energy level has been pretty good. Yay!


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Saturday, December 21, 2013

Ice

Thank you for the tips on our winter patio ice skating rink!!! We didn't get to town today but we will tomorrow and we will follow through. This ice is treacherous.

We are scheduled to leave Thursday to drive to St. Louis. The weather in the midwest is looking ugly -- I hope it clears up before we leave.

Nothing else interesting to report.


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Thursday, December 19, 2013

Dentist

We went to the dentist and he decided to re-line Marshall's dentures with a temporary liner to see if that helps any.  If it does, then we will try getting them permanently relined.  So far, so good.

The snow we had a few weeks ago is still lingering on the ground, which would be okay except that every day the temperature gets above freezing just long enough to cause some snow to melt (but not all of it) and then it freezes again and we now have an ice skating rink outside our door.  It is very dangerous and we can't figure out what to do about it.  The poor dogs slip and slide every time they go out and we have to be very careful when Marshall goes out.  A fall right now would not be a good thing for him.

We are getting ready to go to St. Louis the day after Christmas to spend a few days with family.  Looking forward to that.  Last Christmas Marshall was in so much pain that Christmas was a nightmare.  It's looking like this year will be much better!

Tuesday, December 17, 2013

Fun days

The past few days have been delightful. Marshall has felt really good so on Saturday we went over to straighten up and re-stock our booth at the Marketplace Shops in Canon City. We did some shopping and had lunch. On Sunday we went to lunch at a new restaurant in town. This one is so promising. Their menu lists southern cooking and so far Marshall has enjoyed comfort food like fried green tomatoes, fried baloney sandwich and biscuits and gravy -- all delicious. Very different from all the other restaurants in town.

Yesterday we bummed around in Canon City again and today we cooked a meal together. We haven't done that in years. And since his diagnosis he hasn't been able to stand at the counter long enough to cook. So today was a lot of fun.

Tomorrow he has a dentist appointment to see if the dentist can come up with anything that can be done with Marshall's dentures.


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Saturday, December 14, 2013

Goldwater Law Firm

There was an ad on TV tonight asking for men who were diagnosed with prostate cancer after getting testosterone treatments to call the Goldwater firm (sort of like the mesothelioma ads that are on TV all the time). So, since Marshall was diagnosed after receiving testosterone injections, we decided to call and see what it was all about.

The call was screened and we are supposed to get a call in the next few days from a member of the law firm. It will be interesting to see what really happens with these solicitations.

We stayed home today and were lazy bums. I ordered a bunch of Johnny Carson DVDs and they came yesterday so we're going to start watching those. I hope they are as funny as I want them to be.


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Thursday, December 12, 2013

Visit to Primary Care Physician

Today was the followup visit to the primary care physician. He's been trying to get Marshall's blood pressure under control and it looks like we've had some success. We don't have to go back for two months.

And they drew blood today for the allergist. Trying to figure out why Marshall coughs and sneezes so much. We should have those results in a few weeks. In addition, the allergist put Marshall on three or four medications (over and above the million he already takes) to see if that helps and we think it has helped.

Then we got home and the oral surgeon called with bad news. One of the medications Marshall has been on (Xgeva -- a bone strengthener) can cause a serious jawbone problem if you have any dental work done while on the drug.

Marshall's dentures aren't fitting properly any more and we went to our regular dentist to see if anything could be done and he said the dentures have been adjusted as much as they can be adjusted. So he sent us to the oral surgeon.

The oral surgeon called our oncologist and talked about the possibility of simply cutting away some of the excess tissue on the roof of the mouth. He called us today to say that the oncologist advised against doing anything that could even come close to nicking a bone, so the oral surgeon decided he would rather not work with us -- he didn't want to take any chances.

So now I guess we'll go back to the regular dentist to see if he can try to adjust the dentures again, or maybe re-line them. Otherwise, Marshall may have to be toothless and he's not very happy about that. Send good vibes his way, please, that something can be done.

The psychologist called today and they had a session. When we go back to the hospital on January 6, we will see the psychologist together.

And as I type this, we are watching a Broncos game on this new TV. Awesome.


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Wednesday, December 11, 2013

Today's visit to Cancer Center

We saw the nurse practitioner today (we don't see the oncologist any more unless there's a particular reason). Marshall is demanding to see the oncologist when we go back in January.

Anyway, her name is Kathryn. Kathryn said the following:

* The PSA went up again -- to 2.16 -- and that is something to keep an eye on but it would need to really spike before they would react.

* She said Dr. Flaig likes to "ride the horse" until it dies -- meaning that he does not want to discontinue the medication (Zytiga) unless he feels positive it is no longer working at all. She said each medication that works adds more life so they don't want to stop anything too early.

* The PSA in a healthy man should not be over 4. But the PSA in a prostate cancer patient should be zero. However, every man is different and they have one man whose PSA has been at 100 for 5 years now and he's still on Zytiga and still doing well.

* Dr. Flaig considers PSA to be part of three things to watch: (1) whether the patient is symptomatic, which Marshall isn't and hasn't been for 10 months now; (2) what the scans show, and Marshall's scans are good right now; and (3) PSA is the last thing. So since Marshall is not symptomatic and his scans are good, we should not get worked up about the PSA.

* Whenever the Zytiga is judged to be failing, the next step will be chemo, so we want to be very very sure when we make those decisions. She said that the type of chemo that would be the next step is something called docetaxel which she explained is not as hard on the system as other chemo treatments. It would be administered once every three weeks for a specified period of time.

She also said that radiation was still an option if he develops more bone pain. He just can't have more radiation in spots where he's already had it.

All of Marshall's other lab work came out fine, right where it should be. So that's it for today. I am exhausted. Marshall had brief moments of depression today, but it was nothing like it was at the last visit. Thank goodness!

We are now working with a primary care physician, an oncologist, a nurse practitioner, a psychologist, an allergist, a dentist and an oral surgeon. And he has to periodically see the VA doctor just to be sure he stays in the VA system. It makes my head spin...


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Tuesday, December 10, 2013

Smart TV

The Geek Squad that was delivering our new Smart TV insisted on using a GPS to get to our house even though we told them that GPS won't find our house. So they ended up way out of the way and in the process they slid into a ditch. Marshall called a wonderful neighbor, Dave, and Dave drove out to find the guys and help them get out of the ditch and directed to our house.

Dave even had to bring the TV up to our house in his truck because the Geek Squad's van wouldn't make it. So Dave is a star today!

The TV is awesome, but when they were hooking it up, somehow the internet went down, so that meant a call to CenturyLink to get back up and running again. It only took about 20 minutes.

Tonight we watched a 3D movie on our new TV (it came with the 3D glasses) and I had never seen a 3D movie before. It was incredible. The movie was The Hobbit and I would swear there were birds flying all over our living room. We also bought Wreck-It Ralph in 3D and we'll probably watch that this weekend. We just love the TV and we'll have a lot of fun figuring it out. Merry Christmas to us!

Tomorrow is our next visit to the cancer center and Marshall is always very nervous on those days. Maybe tomorrow will be an Ativan day for both of us. It would be really nice to have these visits be a bit more calm.


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Monday, December 9, 2013

Doctor visits

Friday Marshall saw the psychologist. He really liked the guy so hopefully it will get Marshall out of this depression hole he's been in.

The weekend was quiet. We went out to eat and watched football.

I didn't do as well as I thought I would at crafts show but it was still fun.

Today Marshall saw an oral surgeon. I will write more about that as time goes on.

Tomorrow our new Smart TV gets delivered.

And Wednesday is next visit to Cancer Center.


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Tuesday, December 3, 2013

Allergy Clinic

Today was Marshall's visit to the Storms Allergy Clinic in Pueblo. He's had a persistent cough for quite a while now and the oncologist and primary care physician have both been unable to find a cause for the cough. So we were referred to the Storms Clinic and today was the day.

We really really liked this clinic and we really liked the doctor (Dr. Bowdish). He put Marshall through a bunch of tests and now he has to have some lab work done and they will see if they can come up with answers.

Marshall's visit to the psychologist is this Friday and since a bunch of snow is being predicted again -- and since I have a crafts show this weekend that I need to be here for and can't go with him -- Marshall may drive up to Denver on Thursday and spend the night with some friends to be sure he is able to make that appointment. It isn't critical for me to be with him for this appointment. Now I just hope there isn't so much snow that I can't make it town to get my table set up for the crafts fair!

He has had three or four really good days during the past several weeks, but mostly he hasn't been feeling really great.

Today when we were in Pueblo we went to Best Buy and bought ourselves our Christmas present to each other -- one of those 60-inch Smart TVs. It will be like a movie theater in our living room and should be lots of fun. We will probably need a college degree to just learn how to operate the thing!


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Sunday, December 1, 2013

Catching Up


Now that I'm back after a monthlong hiatus from my blog, I have a lot of news to share….

Saturday, November 9, 2013

Taking a break

I am taking a break from blogging.

I hope everyone has a wonderful thanksgiving. Will be back in December.


- Posted using BlogPress from my iPhone

Thursday, November 7, 2013

Audrey's first week here

Well, Audrey has been here a week now and we are starting to get in a groove. She and Marshall are really enjoying their time together, reminiscing and looking at pictures. He took her on a few drives to see the beautiful scenery.

The first two days, Audrey was not feeling good at all so we took her to the clinic and it turned out to be altitude sickness. They gave her some medication and she's been feeling much better.

Then Marshall had a few days of feeling lousy so they sat around watching TV and relaxing and I spent time with friends. I've caught up on quite a few things.

Here's Marshall and Audrey going for a ride in Nellie Belle.



On a completely different matter, when we moved to Westcliffe, I learned that one of my childhood friends, Gary Joseph, also lived in Westcliffe. I've known Gary since we were five years old and it blew our minds that both of us retired in the same town. Gary had always wanted to be a cowboy and he has adapted to the cowboy life like an old pro.

Well, for our first ride in Nellie Belle, we went over to Gary's and got to see his 1969 Chevy Camaro convertible. For those of us who grew up in the sixties, this car is really cool, loud muffler and all. Although I'm not sure the cowboy hat goes with the Camaro. Try telling Gary that, though....




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Thursday, October 31, 2013

No news is good news!

Well, things have been going along pretty well. Lots of really good days where we've been out and about, going to lunch, being quite active and several bad days where he could barely move his legs (the lack of testosterone causes that) and had some nausea. And the pain has been quite a bit less.

Tomorrow we pick up his sister. She is coming to stay for almost the whole month of November. She will be pitching in to keep up with Marshall's medications and other needs and I will have lots of time to get caught up on tasks long overdue.

We have been thinking ahead to next year's fire season and decided to trade in our two ATVs for one 3-seater ATV that is big enough to hold both of us, the dogs and the cat and would enable us to take an "off-road" way off of our mountain in case our main road should ever be blocked by fire. It has a little "truck bed" that will easily hold two dog crates and the middle inside seat will hold a cat kennel.

Okay, we also wanted this thing because it will be tons of fun (see photo).

When Marshall was diagnosed, the oncologist cautioned him to be very careful with his bones. We were advised against going into the mountains with our ATVs because they would be very jarring on the body. Well, this new ATV is much more comfortable with a smoother ride which is great because it means that not only will we have another exit plan, but we can still do something that we both enjoy. Maybe we can't do the really tough rocky rides but there are plenty of smoother mountain trails.



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Tuesday, October 22, 2013

Scorpion Tie

One more thing. The logo for Marshall's unit when he was in Vietnam was a scorpion holding a Gatling gun.

When we got home today there was a package from one of the guys who comes to Marshall's military reunion and it was a custom made black tie with an embroidered scorpion holding a Gatling gun. It is awesome.

Marshall's favorite tie has always been one that he got from Adam Hoeflich many years ago, but the scorpion tie has immediately become his new favorite!




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Monday, October 21, 2013

Chromogranin A

I forgot to mention the Chromogranin A test -- the one that got all these tests going in the first place.

Dr. Flaig said that there are many things that could possibly cause an elevated Chromogranin A level, so we will do the test again at the next visit. He said that we know there is still cancer in the body and a few rogue cancer calls could mess with this test.

The elevated reading could also be a result of drug interactions. So we will watch it in the coming weeks and months.


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Today's doctor visit and test results

This will be long, but detailed (for any of the prostate cancer patients who keep up with this). We started the day today by seeing a neurologist (Dr. Ney).

He's right here at the University hospital and we were referred to him by our oncologist. You would think that someone might have warned us that the neurologist (Dr. Ney) has Tourette's Syndrome. So there was an initial moment or two while we were trying to figure him out.

But when we got over that hurdle, he was pretty awesome. With regard to Marshall's knee pain that comes and goes, Dr. Ney wants to see all of our previous hospital records and he wants to have two nerve tests done (a nerve conduction study and an EMG), but based on our lengthy interview with him and the silly tests he performed (not really silly, they just looked silly), he said he thinks it is possible that Marshall's knee pain could be something called radiation neuritis (which would be a long-term side effect of the radiation that Marshall had last Christmas). The nerve tests may tell him something about how the nerves are working. These tests should be interesting because they both involve electrical shocks. He said it lasts 45 minutes and would feel like being slapped repeatedly with a rubber band.

Also, he is fairly certain that Marshall has not had any mini-strokes. He wants to see any tests done on Marshall's brain, but he feels that it is highly likely that these episodes are stress-related and I must say that sounds perfectly right to me. He said there was a possibility of seizure but it was a slim possibility because Marshall's symptoms are "very atypical." We will be following up with him.

Then Marshall had lab work done. We went to lunch after that and then came back to the hospital to see the oncologist at 3:30. For the past few months we have been seeing the nurse practitioner, so it was nice to see the oncologist again. There is a comfort level in seeing the actual doctor periodically. And I am happy to report that it was all very good news.

The lab work was all normal.

BONE SCAN: He pulled up the bone scan and went over it with Marshall, comparing it to the previous bone scan. It showed that there is absolutely no evidence of new metastatic disease and all of the known lesions are "less conspicuous."

CT SCAN: The CT scan showed slightly more "uptake," but Dr. Flaig says this is not reliable and with regard to bone metastasis, the bone scan trumps the CT scan. But the CT scan also showed absolutely no new lesions and no organ involvement (liver, spleen, lymph nodes).

MRI: The MRI showed extensive bone metastasis, but it was in the areas we already know about. There was dense sclerosis, which he says indicates bone healing (meaning that the cancer shrunk and calcium started filling in the areas where the cancer was) and indicates healing. There are no compression fractures and no spinal cord compression.

Marshall's blood pressure was very high every time it was taken today but his stress level was also high.

Dr. Flaig said that since Marshall's bones are in good shape, we will hold off on the Xgeva (bone strengthener) for another month or two just in case the Xgeva was the cause of any of the pain he's been having. But they went ahead and gave him a flu shot and a Zoladex (hormone) injection today.

So we left there in high spirits, got a bottle of wine at the hotel bar and ordered some thai food and ice cream.

Now we will concentrate on the neurologist to see if he can find a cause for the sharp stabbing pains Marshall gets in his left knee and groin area. But the fear that these pains were cancer related is now gone and the stress level has toned down a lot.


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Sunday, October 20, 2013

We made it to Denver

We made it to our hotel in Denver and now we just wait (and try to stay calm) until tomorrow.  We have decided to extend our stay for another night because we won't be done with appointments tomorrow until at least 4:30 and we won't feel like hitting the road in rush hour traffic after a long day. So we'll be heading back home on Tuesday. Gina, our dogsitter, is wonderfully flexible.

Gina brings her dogs when she stays at our house so here's a photo of her dogs Baby (bichon) and Annie (toy dachshund), along with our dogs, Marlee and Coco, waiting for dinner. Our cat tends to approach this many dogs carefully so we couldn't get him in the picture.



We brought Marshall's power chair with us this trip so tomorrow will be another new adventure. Instead of driving the 4 or 5 blocks to the hospital, we are going to "walk." And no wheelchair to push in the hospital. WOOHOO!

I will post an entry tomorrow just as soon as we know something.

Stay tuned.....


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Friday, October 18, 2013

Today's lab work

Went to the clinic here in town today to get blood drawn so that they could test the creatnine level to be sure all of the contrast liquids that were used in Wednesday's tests are now out of Marshall's system and he can start taking his Metformin (diabetes drug) again.

After a little confusion at the clinic, they did the blood draw and called us this afternoon to say that all is well and he can start taking the Metformin again.

We have to constantly be on our toes both when dealing with doctors and keeping track of medications because things can get lost in the translation so easily. I keep a notebook and write everything down. That has come in so handy so many times.

Now we wait till Monday to see where we stand.


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Wednesday, October 16, 2013

Today's round of tests is done

Today was a VERY long day. We had to get up at 5AM so that we could get the cancer drugs out of the way before we headed to the hospital. We got there at 7AM and Marshall had to spend an hour drinking the contrast liquid that was used for the CT scan. He had the CT scan at 8AM.

Then we headed down to the Nuclear Department (what an awful name) where he got the injection for the bone scan (this injection came in a lead container!!). Then we had to wait two hours so we had lunch. Then at 11:45 we went back and he had the bone scan.

Then we went to another location where he had more contrast injected and then had an MRI.

The CT scan technician said that Marshall needs to see his primary care physician this Friday to get his creatnine (sp?) checked to be sure the contrast is coming out of his system and he can't take one of his diabetes drugs until we get the okay. So I guess we'll have a doctor appointment on Friday.

We were both zonked by the time we got back to the hotel. We called our dogsitter and she tells us she had to shovel snow at our house this morning. Winter is here.

Tomorrow we go back home and wait till Sunday to come back up here for Monday's appointments. (At 10AM on Monday he sees a neurologist; then at 2:30 more lab work and then at 3:00 we see the oncologist to get the results of all the tests and see where we go from here.)

I canceled the trip to Chicago. The travel agent called United and they say they will refund my nonrefundable ticket if they get a letter from Marshall's doctor so that was good news.

Stay tuned.....




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Monday, October 14, 2013

A flurry of upcoming tests

Today Marshall had a physical therapy appointment so while he was doing that I was on the phone back and forth to the oncologist's scheduler.

She said that this recent test that was done (Chromagranin A-serum) was concerning to the doctor. It could be elevated because of the proton pump inhibitor that Marshall is on, but it could also be an indication that the cancer is growing in a way that makes the PSA test less reliable. And since it would take 10+ days to get the PPI out of Marshall's system, the oncologist doesn't want to wait that long to re-test. Not to mention that 10 days without the PPI would be miserable for Marshall.

So he has scheduled a myriad of tests:
Tomorrow we will go up to Denver and get a hotel room
Then on Wednesday we check in at 7:00a.m., CT scan is at 8:00a.m., followed by the injection for the bone scan, followed by the bone scan itself. The we head to another location for an MRI.

On Sunday we go back to Denver to get a hotel room.

Then on Monday the 21st Marshall will see the neurologist at 10:00a.m., get more lab work done at 2:30 and then see the oncologist at 3:00 to go over all the test results.

Needless to say, all of this news has sent Marshall into a bit of a depression. I was scheduled to go to Chicago this weekend but I am on the verge of canceling it altogether. I will lose $800 (nonrefundable ticket) but that's the way it goes. I'm sure I'll be able to use the ticket for a future trip. I'll make that decision on Thursday.

If any of you ever watch The King of Queens, you will remember that Doug and Carrie hire a dogsitter to watch Arthur. Well, if I go to Chicago I am hiring our dogsitter to stay here with Marshall. She can take care of all of my boys while I'm gone. :)) [She actually is also a Certified Nurse's Assistant, so that will work out very well.]

Marshall's sister is coming to stay with us for the month of November. That should be a nice diversion for him.


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Friday, October 11, 2013

Veterans Fundraiser

Marshall was invited (by Jana Bartlit) to display his motorcycle at a veterans fundraiser last night. So we got the bike prepared (polished it, drained the gas tank, disconnected the battery) to be displayed inside a building. And we drove up to Denver yesterday morning.

The event was at the Wings Over the Rockies Air & Space Museum. We got the bike there and got it all set up and then went back to the Bartlits' to get ready for the event. We had a great time, but it was also very emotional being reminded of the plight of many returning veterans. I believe the event raised a nice amount of money to help veterans. We took Marshall's power chair so he could mingle easier.

We spent the night at the Bartlits and this morning went back and picked up the bike and headed home. Got back around 4:00 this afternoon. I am happy to report that for this two days Marshall's pain level steadily decreased enough that he could get up out of a chair without help.

This photo is Marshall getting set up to display the bike and tell people the bike's story:



This is Marshall with Jana right before the event started:


This plane is displayed at the entrance to the Air & Space Museum and it is special because by the tail number, Marshall realized that this was an actual plane that he worked on during the Vietnam War.



Shortly after we got back, we got an email from the University that there were new tests results to view on our Health Connection website. I logged in and found that an additional test had been run on Marshall's blood draw from Monday, a test that they hadn't mentioned to us.

It was Chromogranin A-serum and Marshall's "value" was 1,665 and he should have been in the 0-95 range. Well, that sure didn't sound good. So I immediately consulted Dr. Google and learned that this test could relate to (1) cancer getting worse; or (2) being treated with a proton pump inhibitor such as Prilosec or Protonix.

Marshall had taken Prilosec for years and was recently changed to Protonix. Dr. Google said that if your Chromogranin A-serum is high your doctor will probably take you off of the proton pump inhibitor for a week or so and then repeat the test to see if the levels go back to normal. If they do, all is well.

I immediately left a message for the oncologist because I didn't like getting a message like this that isn't accompanied by some reasoning. We've got another week before we see the oncologist again and it will be a week of worrying myself to death. Hopefully he will call back on Monday.

And we have now made the appointment with the neurologist (Monday, 10/21) and we believe the MRI will be scheduled for this Monday or Tuesday.

We were scheduled to go to Chicago next weekend for my firm's 20th anniversary celebration but Marshall has decided not to go. So I will be leaving on Friday and returning on Sunday (so I can be with him for his appointment with the neurologist and then with the oncologist on Monday the 21st).


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Monday, October 7, 2013

Cancer Center today

Today was his checkup at the University. He had lab work and then we saw the Nurse Practitioner.

Friday, October 4, 2013

Infection

I don't think I mentioned that on the way to San Antonio, Marshall tried to step up into the trailer that we were towing and his right leg gave out and he fell, scraping his right leg all along the metal strip on the door.

Sunday, September 29, 2013

RiverWalk again

Yesterday was so successful, we went back to the RiverWalk today and Marshall really can handle that Power Chair.  We also visited the Vietnam Memorial today.

Saturday, September 28, 2013

San Antonio on Saturday

Today we decided to try to get to the lively part of the Riverwalk (our hotel is at the very end of the Riverwalk and there's nothing going on here).

Saturday, September 21, 2013

Nice visit with friends

Our Chicago friends, Sue and Stas', came in Thursday night and they stayed at the Bed & Breakfast in Westcliffe (called Over The Brim).  Boy, that place was absolutely incredible.  I can't believe I didn't know about it before.  It took pampering to a whole new level.  Marshall and I joined them for breakfast Thursday morning and since we were eating outdoors, she left fluffy warm blankets on the ladies' chairs.

She served something she called French Toast.  It didn't even resemble any French Toast I've ever had (or made) but it was incredible.

Then we brought Sue and Stas' out to our house and we spent the day catching up.

Thursday night we joined them again at the B&B for the evening wine and snacks.  Again, it was incredible.  They close down at the end of September for the winter, but it would be a great place for Marshall and me to spend the night as a pampered getaway.  There were little alcoves everywhere and 5 or 6 patios, some of them hidden, some with awesome views of the mountains, with flowers and bushes everywhere.  And the proprietors wouldn't let you lift a finger for anything.

Then Sue and Stas' left and we have started our packing and planning for our trip to San Antonio.
Sue, Stas', Marilyn, Marshall -- at B&B

Marshall, Sue and Stas' -- breakfast at B&B

Stas', Marilyn, Coco, Marshall and Sue -- at our house

Thursday, September 19, 2013

Pain

Today Marshall had his left knee x-rayed to try to figure out what is causing the pain.

The doctor called this evening to say that the X-rays showed a perfectly healthy knee. No arthritis. No cancer. So what is causing the pain? Must be a side effect of medication and there's not much we can do about that.

So this was a meltdown day.

Friends from Chicago will be here tomorrow and on Monday we head to San Antonio for his military reunion. We will be towing the bike so he can display it at the reunion but he doesn't feel comfortable riding it. Legs hurt too much.


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Friday, September 13, 2013

Gene Testing in Prostate Cancer

This is for any prostate cancer patients who follow this blog:

The following link is to the website of a burgeoning research company that will be collecting saliva for free genome sequencing of prostate cancer participants. In exchange for the free service they would be collecting your genetic info to put in a mass database regarding prostate cancer genomes. They are awaiting approval before they get started but you might like to pop on your email address to get in line. I understand that they do give you results regarding your genes. Since the tests usually cost between 5 and 10 thousand dollars I thought it might be worthwhile to check it out.

Http://myprostatehealth.us

I put Marshall on the list and if anything comes of it, I will report back.

In the meantime, feel free to share this link with others who may be interested: http://lnc.hr/p2aYD

Monday, September 9, 2013

Physical therapy

Today Marshall started his physical therapy and so far, so good. He made it through the hour doing very smooth and easy stretches and moves. This will be a good thing.

Saturday, September 7, 2013

Scorpions

We have neighbors who have lived here for 20-plus years and they have NEVER seen a scorpion. Why is it that since we got here in 2003 we have seen about 7 of them? I get a little freaked out but since 6 of the scorpions we've seen were dead or close to it, I thought maybe they came with our house (which came from Texas) and they were dying off.

But tonight, our cat (Okie) was playing with something and when I looked down, I thought "well, that's a weird bug," and then I looked closer and IT WAS A SCORPION. Alive and well and moving fairly quickly. I don't handle crawly things very well, so I started yelling for Marshall who, as you know, moves very slowly these days. I managed to summon the courage to get a paper plate and keep the scorpion in one place until Marshall got there to kill it. Now I will think about scorpions every time I put on a pair of shoes...

And earlier today my cute little dog went outside and came back to the door eating a rat. There was nothing I could do. He ate the whole thing. I knew that within a few hours he would be throwing it all up. And since Marshall had been nauseous all morning, I went shopping and told Marshall I would come back after everyone was finished being sick.

On top of all that, Marshall still has leg pain and we are using painkillers again to try to control the pain.

THIS HAS BEEN AN AWFUL AWFUL DAY!!!


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Thursday, September 5, 2013

Doctor appointment

Today was the appointment with Marshall's primary care physician. Marshall woke up feeling really bad so it was tough for him to get to the car and then into the doctor's office, but he did it.

Tuesday, September 3, 2013

Cancer Walk

Yesterday I participated in a 3-mile cancer walk here in town (Custer County Cares About Cancer).

Thursday, August 29, 2013

Depression

Marshall is in a hole of depression that he can't seem to come out of. And there is nothing I can do to help. He doesn't even feel like getting the motorcycle out because he is having so much achy-pain in his legs and here lately intermittent stabbing pains in his groin.

Tomorrow or Saturday I'll try to get out and get the compression stockings. And we have an appointment with Dr.Bliss next Thursday to get the physical therapy started and to get the referral to a cardiologist to see if we can take him off the Plavix and get started back on Prilosec and hopefully at least try to get the coughing/nausea situation under control.






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Wednesday, August 28, 2013

Today's visit to Cancer Center

Lab work today was good. PSA is still 0.88 so that is really good. He is well hydrated (also good), his iron levels are coming up nicely, calcium level is normal range, kidney function good. So he will now stay on monthly monitoring instead of every two weeks.

With regard to leg pain, they recommended that Marshall start a physical therapy program to try to regain some strength. The goal of the cancer treatment is to kill off the testosterone which in turn causes fatigue. So building up the muscle strength will help in that regard. He will call Dr. Bliss here in Westcliffe tomorrow to set up an appointment to get the physical therapy started.

With regard to the increasing nausea, they want Marshall to see a cardiologist to see if he can discontinue taking the Plavix (which has a bad interaction with Prilosec) and if he can stop the Plavix, then he can start the Prilosec again and hopefully calm the stomach down which will hopefully cut down on the nausea. (The Plavix was prescribed as a precaution during one of Marshall's hospitalizations when they thought he may have had a small stroke and it's possible that now it is not needed any more).

With regard to the varicose veins, which also cause leg pain, they want him to get some compression stockings.

With regard to the coughing (which has gotten progressively worse and usually leads to nausea), they think it might be from GERD and that if he is given the go ahead to start taking Prilosec again and his stomach calms down, the GERD will go away and the coughing will lessen.

He got his Xgeva (bone strengthener) shot today.

So we have some doctor appointments to make but we felt good when we left the Cancer Center today because we had some concrete action to take to try to resolve some of these quality of life issues.

PS -- we had a laugh with the doctor today because for the longest time all we did was agonize over the PSA and everything else took a back seat. But his PSA has been at zero for two months now and we immediately put the PSA on the back burner and moved on to other things to obsess about! How soon we forget.....



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Friday, August 23, 2013

Quiet days

It's been a quiet week since I got back from St. Louis. Marshall still has leg aching problems and his knees are hurting. Plus he continues to have nausea that comes on suddenly.

But we did manage to go to Pueblo on Tuesday and we went to lunch (although he just didn't have an appetite). And we went to lunch yesterday (again, he didn't have an appetite). So we bring doggy bags home and he eats it later.

And he hasn't used his cane much this week, so maybe that's a sign that some of these side effects are going to calm down a bit.


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Tuesday, August 20, 2013

Back from high school reunion

I got back from my reunion late Sunday night. Marshall did well on his own, but he was glad to have me back (smile). He still doesn't feel well and his legs ache, his knees hurt and he is exhausted all the time. We go back to the University on the 28th and we will talk about those things.

As for my reunion, I had so much fun. It was great to catch up on classmates. We had a very fun class. I think 32 of us showed up out of a class of 61.


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Back from class reunion

I got back from my reunion late Sunday night. Marshall did well on his own, but he was glad to have me back (smile). He still doesn't feel well and his legs ache, his knees hurt and he is exhausted all the time. We go back to the University on the 28th and we will talk about those things.

As for my reunion, I had so much fun. It was great to catch up on classmates. We had a very fun class. I think 32 of us showed up out of a class of 61. Here is our group photo:




Tuesday, August 13, 2013

Awesome end result of Marshall's photo shoot

Our photographer friend, Sean, finally finished putting together a 6-minute video with all the photos, interviews and videos he took of Marshall over the past 3 months.

Saturday, August 10, 2013

My 50th class reunion

On Wednesday I am heading back to St. Louis for my 50th reunion.

Marshall is staying home and fending for himself. I won't be writing any more until I get back on the 19th (unless something noteworthy happens).

Our next appointment at the Cancer Center is August 28th.

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Monday, August 5, 2013

Feeling better

Marshall has been feeling steadily better since Saturday. He is now on Zantac for his stomach and the iron pill is going to be taken with food from here on out. It isn't absorbed as well that way, but the doctor says that's okay. We'll continue eating more iron-rich foods.

Today we went to lunch and ran some errands and he did really well.


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Saturday, August 3, 2013

Battling nausea

I had to go to the Apple Store in Colorado Springs today to see what's wrong with my iPhone. When I got home, Marshall was pretty sick -- sicker than I've seen him since we started this journey. I won't go into ugly details but it took a while for him to get to a point that he could get into bed, calm down and go to sleep.

We have absolutely no idea what caused this, but he had just had his iron pill which he is supposed to take on an empty stomach with a glass of orange juice. I'm thinking either one of those things could have caused this.

I hope he feels better when he gets up.


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Friday, August 2, 2013

Thunder and lightning

We are still getting lots of lightning and some rain. So to avoid another strike we unplug phone and Internet the minute we hear the first rumble. So we are out of touch off and on. Ugh.

Marshall was really tired today and his legs ached so he didn't do much today.


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Wednesday, July 31, 2013

Cancer Center Day, PSA 0.88 !!!!!!!!!!

Today was the 2-week monitoring visit to the Cancer Center. All of the blood work came back in the normal range -- AND THE PSA IS NOW DOWN TO 0.88. This could not have been a better day.

The nurse practitioner said that he is doing so well we are now going to have monthly visits instead of bi-monthly. That is excellent news, but it is also a bit scary. Those 2-week visits were comforting in their own special way. But it's really good to not have to drive 400 miles every 2 weeks.

He is feeling much better after his hospitalization as well. So perhaps the medication tweaking is making a difference, too.




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Saturday, July 27, 2013

Getting back to "normal"

We are slowly getting back to our "normal." Marshall has been feeling pretty good and his spirits are better. He will feel even better after our next visit to the Cancer Center on Wednesday for the regular checkup and to go over this recent hospitalization with the oncologist.

Today his lift chair arrived and it is pretty cool. It is a combination lift chair and zero gravity chair so it's supposed to help keep the blood from pooling in the legs. He can adjust this chair about 20 different ways.


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Thursday, July 25, 2013

Home from the hospital

Marshall was released today, but no real diagnosis. They changed a few medications to see if perhaps some of them were interacting badly.

We are home and relaxing.





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Wednesday, July 24, 2013

2nd day in hospital

Marshall had a brain scan (it was normal); a CT scan of the kidneys (it also was normal); a visit with speech therapists and a visit with a physical therapist (they said he was fine); an EEG (no results yet); and 24-hr heart monitoring (no problems). His blood pressure has been running a little high. Tonight he got an MRI of his brain and we will get those results tomorrow.

The hospitalist said that he really thinks it was a mini-stroke and he hopes that the MRI will determine it for sure. And for the time being Marshall will stop taking Prilosec because it has a potential to interact poorly with Plavix and Plavix is the more important drug.

When I left the hospital this evening, Marshall was up and about and actually taking a walk around the floor. But when I got home and called him, he was kind of depressed. Too many things going on with his health.

He should be released tomorrow and with any luck we will leave there with an actual diagnosis.


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Tuesday, July 23, 2013

In the hospital again

Well, Marshall got back from Wyoming this morning on his trike (it finally was fixed and he was able to pick it up). I went to town to get him at the place where he stores the bike and he pulled in, parked the bike and got off. He was in a great mood.

He took a few steps across the garage and started talking funny and he grabbed the wall at the door and said his stomach hurt. I got him a folding chair that we keep at the garage and he slid down to the chair and he was sweating and cold and clammy (sound familiar? -- something almost like this happened earlier this year here at home) His speech was slurred and he said his vision got blurry. He said his neck felt stiff.

We were only a few blocks from the clinic, so I called 911 and the ambulance was there in moments and took him to Parkview They did some tests in the emergency room and couldn't find anything wrong so they admitted him.

They did an ultrasound of his neck to check the arteries and that looked okay. Tomorrow they are going to do an MRI -- if they can sedate him for it since he has severe claustrophobia -- on his kidneys. They said the blood work showed kidney problems. We've been dealing with this at the oncologist's office, too, so I am hoping it's just another episode of dehydration from the motorcycle trip.

The hospitalist spent a bit of time with us and said for the most part he just didn't see anything wrong. He thinks that perhaps Marshall is having a series of mini-strokes. He did some checking on medications and came back and said it was possible that the Prilosec was interacting badly with the Plavix so we are going to tweak that a bit.

As soon as Marshall gets out of the hospital, we will run all of this by the oncologist to get his feel for this medication tweaking.

And it goes without saying that the eye surgery scheduled for Thursday is going to have to be canceled.

But the good news for the day is that when I got home from the hospital around 11PM I noticed that our phone was working again and our internet is back. It's a small thing in comparison, but it was so nice to be able to have a few things on the plus side.


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Saturday, July 20, 2013

Motorcycle is ready

They called last night to say that the motorcycle was fixed so Marshall headed back to Wyoming today to pick it up. They said that they test drove it a bunch of times to be sure it was okay and it checked out.

We had a little meltdown this morning -- every now and then we let ourselves dwell on the cancer and how it has changed our lives and when that happens it gets emotional. But we move on....

Our land line is still out and our internet is still out. I feel so isolated (ha). We are very grateful for the rain but I can do without the lightning strikes.

This morning I went into the cupboard to get a coffee cup out and there was a scorpion in it!!!!!!!!!! My screams scared Marshall to death. It's so weird -- we have neighbors who have lived here 20+ years and they have never seen a scorpion. We have been here 9 years and we have seen 5 scorpions, three of them were in the house. Marshall said it was a "fine specimen" and wanted me to look at it closer. Fat chance.


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Friday, July 19, 2013

Eye Surgery

Well, Marshall has to have eye surgery on July 25.

Evidently the vitreous fluid behind the retina has broken loose and formed large globs of "gel" that are floating in his eye and making vision in the right eye almost impossible.

The retina specialist (at the University of Colorado) will remove the vitreous fluid and replace it with an air bubble and some saline.  Within a week or so, the air bubble will be absorbed by the body and the eye will start making its own saline solution.

The recovery will be like recovery from cataract surgery.  One week of total rest and using eyedrops every day, wear a patch to bed.  On the second week, he can move around more freely and resume most normal activities (although probably not motorcycle riding for a while).

Since his next visit with the oncologist is on July, we will be at a hotel for the 24th, 25th and 26th.

Thursday, July 18, 2013

Addendum to today

The visit to the ophthalmologist (at the University Hospital) was kind of a downer.

Ever since Marshall had cataract surgery on his right eye -- about a year ago -- there has been a kind of film floating back and forth across his eye and it really messes with his vision.  It's not a floater, it is a film that moves around.  We were hoping that some kind of minimal laser surgery could take care of it.

So today he had a very thorough examination by a retina specialist.  He said that the "film" is actually vitreous fluid that has broken away and is kind of gummed up together.  He advised that there are only two options:  (1) live with it; or (2) have risky surgery.    I asked the doctor what the risks were and he said infection or detached retina or, in the worst case scenario, loss of vision.

The doctor went to great lengths to be sure Marshall couldn't just live with the situation as it is and Marshall said it impairs his vision so badly that he really wanted the surgery.  Since it is elective surgery we need to see if Medicare will cover it so the doctor's scheduler will call us in the next week or so to discuss it.

I asked the doctor if he had performed the surgery before and he said "many times," even though he looked like he was only about 18.  I asked him how successful this surgery was and he said problems only occur in 1 out of 4000 patients.  He also said that the results were usually very very good.

If anyone reading this has any input on this surgery, I would appreciate it.

Today at Cancer Center

Lab work showed that he was starting to get dry again so she stressed the water intake.

He got his Xgeva shot and his Zolodex shot. Zolodex is taking the place of Lupron. They think he will tolerate it better.

For a lot of reasons, Marshall is depressed today so this has been an incredibly ugly day. And we still have a 4-hr drive home. Ugh.

Now we are waiting for him to see the ophthalmologist and they are running late. I hope they are able to help him. It would improve the mood.

We will head back home when this is done.


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Sunday, July 14, 2013

Update

First of all, I want to clarify that Marshall broke down in Wyoming, not Montana like I said in my entry a few days ago.  I learned about my mistake when my friend Jane -- who lives in Montana -- called me this morning to find out where in Montana Marshall was and why did I mention Wyoming in the last post.  My apologies.

Marshall made it back to Denver in the rental car and is staying with a friend.  Tomorrow he has lab work done at the University Hospital and then he'll be home tomorrow afternoon to begin his fight with Harley Davidson about getting a new engine for the trike.

In the meantime, the lightning strike to our house is still playing with my brain.  The land line works one minute and doesn't the next.  The internet is bouncing on and off.  I'm writing this during a brief "on" period.  And on top of that my iPhone is acting all wonky.  I may have to drive to Pueblo tomorrow to have a talk with the AT&T folks.

We love living in these mountains, but those dry lightning strikes are dangerous.

Friday, July 12, 2013

The saga continues

Marshall's motorcycle has huge problems. I won't even pretend to understand what happened, but there were words like "hole in the piston," and "burned through the plastic," etc. The Harley dealer in Caspar, Wyoming was not able to fix it so Marshall had to leave the bike behind and rent a car to drive back. He also had to miss the Wyoming State Harley Rally and eat the cost of two nights at a hotel. What a trip.

I realized that Marshall doesn't have enough cancer medications with him for the extra time that his return trip is going to take and had a bit of a panic for a while so I called the on-call oncologist at the University and she talked me off the ledge. I was going to get in the car and start driving up to meet him so we could keep on our medication schedule, but he should be back home on Monday in time to take his medications a little late so the oncologist said it would be okay.

He is due for more lab work on Monday so on his way back he also has to stop at the University Hospital.

Our new wireless router finally arrived today at 5:30 and I spent the next 4 or 5 hours trying to get it all set up again. I'm not sure I succeeded. I'll know for sure tomorrow.

PS: Marshall made the comment that when he had his Honda GoldWings, he NEVER had a breakdown or any mechanical problems whatsoever. Just saying .......


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Thursday, July 11, 2013

What a day

Our house got hit by lightning twice. Knocked out the land line for the day (thank goodness for the iPhone which I'm using now).

Fried the wireless router so no Internet till Saturday or Monday.

Scared the daylights out of me, the dogs, and the cat.

And then I hear from Marshall that the Harley broke down in the middle of nowhere in Wyoming. He will be stuck there a while.

What next?


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Tuesday, July 9, 2013

PSA DOWN TO 1.04 !!!!!!!!!

We came up to the hospital yesterday so that Marshall could go to the Rocky Mountain Lions Eye Center. They couldn't find anything definitive wrong with the eyes, so they set another appointment for next Thursday for him to have a thorough retina examination.

So we spent the night at our favorite hotel, the Spring Hill Suites, and had a nice evening just kicking back.

Today was the regular 2-week lab work and checkup with the nurse practitioner, Kathryn. The best news is that the PSA has gone down even more and it is now 1.04. That is so exciting.

His iron levels are coming up again, which is really good, so we will continue the iron supplements until it gets back up to normal.

His Vitamin D levels are getting low again, so they will be starting him up again on 50,000 units of Vitamin D a week for the next 24 weeks to bring those levels back up. We mentioned that it was odd that his vitamin D would be so low when he gets a lot of sunlight. She said she is not at all convinced with regard to the correlation between sunlight and vitamin D production in the body.

With regard to the petechia/purpura on his arms, she said that is probably caused by the prednisone and that, while it is annoying, it is not harmful and he shouldn't worry about it.

The varicose veins on his legs are not concerning her at this point, but we will keep an eye on them and monitor them. The varicose veins could be causing some of the leg pain he's been having.

She said that if the restless leg syndrome continues to get worse, she will prescribe Gabapentin for him. (Tricia, I mentioned that you gave us your bottle of Gabapentin and she seemed to think he could use that if necessary, so thank you.)

We mentioned that he's been having some leg pain that is reminiscent of the bone pain he had before and she said that if it was bone pain from the cancer, it would not be intermittent, it would be constant, so she was confident it was not the cancer.

Marshall asked her for her opinion about what was happening with the cancer in the bones -- if he could be considered in remission. She said that the term remission isn't really used any more except in very limited cancer situations. It is not used in prostate cancer that has metastasized. But she is confident that the tumors are being starved and thus are not growing. She said that's what all of the test results tell her.

And she's not sure what is causing the nausea, but she wants him to try to not take the anti-nausea pills unless he absolutely has to. Easier said than done.

But then she saw one of the tests that indicated he was severely dehydrated again and that concerned her. She did not want him to leave on his motorcycle trip today without being hydrated, so he had to stick around until 3:30 to get hooked up to an IV for several hours. She stressed to him again that he needs to get 60 or 70 ounces of water a day.

She wants him to see his primary care physician on Monday when he gets back to check the kidney function and if it isn't back up to par by then, she wants him up at the hospital ASAP in order to do an ultrasound of the kidneys to see if anything bad is going on. She feels confident that he is just dehydrated from not getting enough water and that he will be back up to par by Monday but she wants to be sure we stay very much on top of this.

I asked her whether drinking coffee could cause dehydration and she said absolutely. She said that for every cup of coffee he drinks, he needs to have two glasses of water -- one for the water he should be drinking and a second glass to make up for the cup of coffee. So Marshall may cut down on coffee.

He is due for another Lupron (hormone) injection and Xgeva (bone strengthener) injection and he'll get that next Thursday.

One of Marshall's childhood friends was in Boulder this week so he came over to the hotel to spend a few hours with Marshall this afternoon. That was a special treat.

I think that sums it up.


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Sunday, July 7, 2013

Back to see the doctor

Tomorrow (Monday) we head up to the University Hospital again.  On Monday Marshall has an appointment with an ophthalmologist at the hospital to see if they can do anything about the film that is covering one eye and moving back and forth.  He's had cataract surgery and went back to the ophthalmologist who did that surgery and this doctor said "sorry, nothing can be done, you have to learn to live with it."  That wasn't really an acceptable answer, so we are going to the very highly regarded University doctor to see what she says.

Then Tuesday morning is more lab work and then a visit with the Nurse Practitioner to see where we stand with regard to iron levels, Vitamin B levels, and all the other things they check every two weeks.  Marshall has developed what the Nurse Practitioner said was petechia on his arms.  (I hear that word on Law & Order all the time and now I know what it is...)  Basically that's broken blood vessels that then cause these purple blotches on his arms.  And he scratches them and they get worse.  So we want to talk to her about that.

In addition, he says his legs still have that very very heavy feeling and his knees feel wobbly.  When I consult Dr. Google, it seems like this could be due to the low iron levels, but we will talk to the Nurse about that, too.

Then after that visit on Tuesday, he is taking off on his bike and going to the Wyoming State HOG Rally to enter his bike in another show and I will head back home.  He'll be gone till Sunday.

I have already made an appointment for a massage and a manicure on Wednesday!!

Our sweet sheltie, Marlee, has developed a lipoma (benign fatty tissue) on his stomach.  It is weird looking but at least it is benign.  Poor thing, he is now almost totally deaf, he has thyroid problems, cataracts, and extreme arthritis (without Rimadyl, he can hardly walk).  He does a lot of sleeping these days.  We've bought him a very nice bed with a bolster pillow around it that he loves.  Every hour or so he gets up enough energy to chase the cat and then he lays down for another nap.  We will do whatever it takes to keep him comfortable and pain-free.

Saturday, July 6, 2013

More Photo Shoot

Marshall's depression lifted a bit and we got out and about several times this week.

Sean Halverson, the photographer who is doing the photo shoot, asked us to come to his studio Friday night to do some video of Marshall.  Everything he did was SO cool.  He put Marshall in an entirely black background and sat him in a big armchair.   There was a table next to the chair with a glass of wine on it and an old time radio (indicating the period of time of the VietNam war).  Then he did a video interview and Marshall appeared to be sitting in the shadows but you could see him clearly.  Marshall was dressed in his Harley gear and the glass of wine sitting on the table was kind of a quirky touch.  Really cool.

When he is finished -- which will still be a while -- he plans to post a short video on YouTube and when that happens I'll put the link here.

He also gave Marshall an 8x10 of one of the pictures from the last shoot.
Sean's wife, Heidi, is a fellow crafter (she makes dichroic glass items) so she and I made earrings while Marshall and Sean were doing the video.  It was a fun night.

Then this morning we met Sean at 6:00am (YAWN) so he could get a video of Marshall on the bike.  The town was totally dead at that hour so he was able to shoot Marshall coming towards him and then heading away from him, all on Main Street with no other traffic in the video.

Sunday, June 30, 2013

Finally, we got some rain

For the past three days, we have had an afternoon shower every day.  That was BADLY needed.  It is drizzling right now.  It's the talk of the town.  Everybody is overjoyed.

Yesterday Marshall went out and bought a 300-gallon water tank and today a neighbor came over and filled it for us.  He situated it outside right where the fire department could see it if they ever have the need to come up our road.  And we bought several more fireproof boxes for the important things.  We have a big stack of things at our door all ready to grab and run if we have to.

Marshall has been extremely fatigued the past few days.  It has been depressing him a bit.  Fatigue is going to always be part of his life because of the medications but it seems to have gotten worse, so we are hoping the iron supplementation will slowly help in that regard.


Wednesday, June 26, 2013

Still hot and dry

The last few days have been miserably hot. We operate on solar power so we don't have air conditioning (although we do have a window unit out in the garage and we just may install it in a bedroom window and only run it when absolutely necessary).

Marshall has been able to get a couple of nice rides on his Harley the past few days but today he said his legs felt like they had lead weights on them and he didn't move around much. Those varicose veins showed up again today, too, and I believe they can cause a heavy feel in the legs. We'll have to ask about that. But it was great that he had a couple of higher-than-usual energy days. We are attributing some of that to the iron supplementation he's getting.

We noticed that the "check engine" light was on in the Prius so I drove it over to Toyota in Pueblo today. Turns out that the mice have been busy again. They've gotten in and chewed some important wires. In the past four years we have spent more than $2,000 fixing mouse damage to our various vehicles. So I sat at the dealership for several hours and came home $200 poorer.

I have heard that peppermint oil is a deterrent so tomorrow I am going to put cotton balls soaked in peppermint oil in both vehicles. The smell is overpowering but if it keeps the mice away it will be worth it. If anyone has other suggestions (other than poison) I'd love to hear them.

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Sunday, June 23, 2013

Colorado Fires

The fires in southern Colorado are all around us (Walsenburg is 40 miles away, Royal Gorge is about 40 miles away, Texas Creek is about 27 miles away, Wetmore is 26 miles away, Colorado Springs is 80 miles away) and even though none of those fires will threaten us, they are showing us that southern Colorado's drought situation from the past few years is serious and dangerous.

We met with some of our neighbors today and explored all of the feasible escape routes if our area should have a fire. All of these routes (except one) require 4-wheel drive and a keen sense of direction.  I have 4-wheel drive but the sense of direction???  Not so much.  So let's hope that if worse comes to worse, Marshall and I are both home and he can do the driving.

We also have two ATVs and we spent several hours yesterday making sure they will start and that we have gas for them, etc., so that will give us even more escape choices.  I thought I was getting a little paranoid, but everyone around us is doing the same thing.

And for the past few days we have been gathering our important belongings and packing them up and putting them at the front door, very easy to grab if we have to leave in a hurry. We have also packed some suitcases and they are in the car. Better safe than sorry. All it takes is one idiot tourist throwing a cigarette butt out a car window.... and it is tourist season in Westcliffe.

Usually when we go up to the Cancer Center our neighbor Cathy comes over several times during the day and takes care of the animals (bless her), but she wants to stay close to home this summer so I've got a message in to our dogsitter to talk to her about coming over on those days.

Marshall has been having problems with his legs lately. His knees hurt (which we think is arthritis and I'm getting him some of those Ace braces to stabilize the knees). He appears to be developing varicose veins which are causing pain issues. We will discuss that on our next visit on July 9.

He is having some dental difficulties -- and one of the possible side effects of the Zytiga is jaw bone problems -- so he has an appointment with the dentist to check that out. And he is having vision problems, so we made an appointment with an ophthalmologist at the University of Colorado on July 8.

I got my "post-cataract" glasses and I'm not at all satisfied with my vision, so another doctor visit will be in the works for me.

MAKE IT STOP!!! :)

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Tuesday, June 18, 2013

Today's lab work at hospital

We spent the night in Denver last night because our appointment this morning was early. Marshall forgot to bring his CPAP machine so he didn't get any sleep and was totally exhausted today.

[At our last visit, the Nurse Practitioner had suggested that Marshall needs to eat things like red meat and spinach to help with his iron intake, so last night we went to the Texas Roadhouse and had a wonderful steak dinner!  Following doctor's orders.....]  :)

We got to the hospital at 8AM and got the lab work done and then settled down to wait for the results. We saw the Nurse Practitioner at 9:15. She said the kidney function is back where it should be. Yay!  He now needs to be sure to remember to stay well hydrated every day.

However, Marshall is anemic and needs to start a daily iron supplement. I asked if this would be temporary and she said this anemia was a side effect of the Zytiga so the iron supplementation will be long term. She warned that iron supplementation can cause constipation.  Ugh.

But the PSA is down and there's no pain, so we're very happy.


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Sunday, June 16, 2013

Colorado State HOG Rally

I have very cool news to report.  This weekend, Marshall took his bike to the Colorado State Harley Owners Group Rally in Greeley, Colorado, and he entered it in the competition.  The bike won 1st place!!!  He will be home today (Sunday) and then Tuesday we go back up to the hospital for more tests to be sure his kidney function has improved.... He's been a good boy and has been drinking the water like he's supposed to....
FIRST PLACE!!
Bikes lining up for parade

Wednesday, June 12, 2013

Cancer Center -- lab work

We saw Nurse Practitioner Kathy Breaker again today.

Good news: PSA is now down to 1.45. That is cause to celebrate!!!!!

However, the lab work showed that Marshall was very dehydrated and his kidney function was suffering. So they hooked him up to IV to hydrate him before we left the Center and we have to come back next week for another kidney function test. He was also instructed to drink 80 ounces of water a day from here on out.

In addition, there were issues with his hemoglobin. I kind of got lost on that one, but she said his blood was more pink than red. She is going to ask the oncologist what he wants to do in that regard and she will talk to us about it next week when we come back.

All in all, though, a really good visit.




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Sunday, June 9, 2013

Photo Shoot, Part 2

Yesterday we spent about 5 hours with the photographer who is taking the photos of Marshall and his bike for possible publication. It was a very tiring 5 hours, but lots of fun.

He met us at the place where Marshall stores his bike -- a garage off of an alley -- and he really liked the lighting there so we spent 3 hours there. When you see these pictures you will wonder what in the world we are doing in a spot like that, but he says he will change the background later.

Then he found a great place in an alley behind a 100-year-old building that was a car dealership back in the early 1900s. The windows were cracked, the brick was really funky and there were humongous red doors. You could definitely see the possibilities with those photos.

While I was watching I took some pictures of what was going on and I'm attaching some so you can keep these in mind several months down the road when you see the finals.












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Friday, June 7, 2013

Marshall got home safely

Marshal got home Tuesday night, all sunburned and tired. He had a really great time.

The motorcycle was covered with bugs and since this weekend will be a little more of the photo shoot (for a possible publication in Harley's magazine "HOG"), yesterday we went down to where the bike is stored and we worked on it for a few hours. Boy, was that a job. And it's still needs a few more hours of work.

Today it rained off and on, so we just stayed home. Tomorrow (Saturday), we will go back and work on it some more and then the photographer will meet us in the afternoon and hopefully take the rest of the pictures.


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Tuesday, June 4, 2013

All is well

Sorry I don't update regularly, but things have been going so well.

Marshall has been gone on his motorcycle trip several weeks and will be back tonight. He has had such a good time. Went to St. Louis and saw Tricia & Ed; then off to Ohio to see his sister and lots of nieces and nephews; then to South Dakota to see an old military buddy. He encountered a little rain and lots of wind, but he says he had a blast.

Marshall is ready to be home and get a little rest.

And I have had some very nice "me" time.




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Sunday, May 26, 2013

Beautiful Sunday....

Today is just a gorgeous day here in the mountains. I think I'll go to the mall. It's 60 miles away, but I think I'll go anyway.

My eye is doing better each day. On my followup visit to the doctor, they took the left lens out of my glasses to see if that would help me and I was still adjusting, so that didn't really help. But this morning I put those glasses on and tried again and I think they will do the trick until I can get new glasses. So everything is progressing nicely.

Marshall's visit to the Cancer Center on Thursday went well. We saw the Nurse Practitioner (I think I told you that we don't see the oncologist any more ... he has put us in the hands of his Nurse Practitioner and we will only see him if there are problems -- let's hope we never see him again).

She did lab work and said that all of Marshall's tests are good. His alkaline phosphate (phosphatase??) gets lower every time. I have no idea what that is, but she said that (1) it means his PSA is likely continuing to go down; and (2) his bones are doing good. Excellent news.

So he headed off on his trip. Today he is at my daughter's house in St. Louis. He expects to get to his sister's in Ohio on Monday. He is having a great time. And so am I. It's a win-win.

He and Tricia were out and about and came across the mascot for St. Louis' KSHE Radio. I understand his name is Sweet Meat??




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Wednesday, May 22, 2013

I had my cataract surgery today and I guess it will take a few days (or weeks) to see if it was successful. Right now I don't notice any difference in vision and my eye feels gritty. I'm sure that's all normal.

Marshall continues to feel good and tomorrow is his next monitoring appointment up at the University Hospital. He is going to pack up his bike tonight and after his appointment tomorrow he will head off for a 2-week trip to Ohio and maybe South Dakota to visit family and friends. I have my followup appointment with the ophthalmologist tomorrow so I won't be at Marshall's appointment, but I think I will be able to be there by speaker phone.

That's all for now. Pretty good, isn't it?


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Location:Regular daily life

Wednesday, May 15, 2013

Busy Busy Busy

Marshall continues to feel good and it feels like all we do is go-go-go. He is itching for the weather to finally settle into spring and summer so he can start his bike trips. If all goes well, he plans to leave here on May 23rd and head to Ohio for a week or so.

In the meantime, I am getting ready for cataract surgery next week and I can't wait to get that over with.


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Wednesday, May 8, 2013

53 days pain-free and another exciting checkup

Still pain free and enjoying life. Planning a busy summer.

Today was another 2-week checkup. All lab work was right where it should be. But the high point of the visit was learning that the PSA has now gone down to 5.1. What a great day.

Also, the nurse practitioner told us about another patient who in 2008 had a PSA of 750 with lots of pain. They started this guy on Zytiga (the drug that is working miracles with Marshall) and his pain went away and his PSA came down to the 100s and has stayed there consistently for over four years. He has stayed pain free That is a great story to hear.


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Tuesday, April 30, 2013

45 days -- enjoying life

At some point I will stop counting the days.  But it's now been 45 days of no pain and feeling good and getting out and enjoying life.

Marshall's daughter was here this past weekend and they went to Cripple Creek for the day on Saturday.  Tanya had never been to a casino so they had a fun time.

Saying goodbye at airport
And some fun news -- A friend of ours is a photographer and has asked Marshall if he could photograph Marshall with his trike for a possible publication in the Harley Davidson magazine "HOG."  He believes the unique paint job on the trike, as well as Marshall's story, will make for a good article.  So last week they met at dawn (yawn) for the first session.  They hope to finish it up this week.
Photo Shoot #1

Photo Shoot #2

Monday, April 22, 2013

Another good report

Our visit to the Cancer Center today went well -- the lab work was all good, no problems.  Another very good day.

Marshall got his quarterly Lupron shot today and he will have a few days of pain at the injection site (sitting will be a little touchy!) but he's used to it.  :)

Sunday, April 21, 2013

36 days -- and Paypal

Today marks 36 pain-free days.  Tomorrow is another 2-week checkup.  Things are going really well.

And after filing a claim through Paypal for the money I lost at The Scooter Store, today I heard from Paypal -- they have deposited $250 back into my account.  Just wanted to report that Paypal honored the promise on its website that they will make good if something goes wrong when buying from a Verified Seller.

Saturday, April 20, 2013

35 days -- and a spa treatment

It is now 35 days of good days and no pain.  I don't know when I'll stop counting.

Yesterday Marshall sent me and a friend to the Broadmoor in Colorado Springs for a full day of spa treatments.  We had SUCH a good time.  When we arrived we were given warmed robes and warmed slippers and that is what we spent the day wearing. 

For the massage and the facial we were in heated beds with heated blankets and soft music.  For the pedicure we were in heated massage loungers with heated blankets over us. 

Lounges overlooking the mountains with cucumber water and berries served all day long, steam room, sauna, aromatherapy room, 50-minute massage, 50-minute facial, pedicure, lunch, it was wonderful.  I haven't felt so relaxed in a very long time. We left there totally limp.  :)

That was very very nice of Marshall!

Wednesday, April 17, 2013

32 days of no pain

Nothing much to report -- except things are still going very well!

Saturday, April 13, 2013

28 days of no pain

Things are going so normally that I forget all about this blog. That's a good thing.

Marshall continues to feel good and he's been out every day enjoying life.
The only side effects he has been having are hot flashes (which he's been having all along), fatigue (which isn't nearly as bad as it was), and restless leg.

The oncologist's office called a day or two ago to tell him to start taking Vitamin B6 -- his levels are very low. So we went and got a bottle of it. (It's possible that a Vitamin B6 deficiency can cause restless leg, so maybe we will get rid of that problem in the coming days.) Also, until his calcium levels come back up he will not be getting his bone strengthening injection.

He is starting to look into various bike shows this summer so he can sign up and start getting that Harley entered into some of them.



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Monday, April 8, 2013

2nd Monitoring visit

Marshall went to the University today for his second followup "monitoring" visit since starting the Zytiga.  (I had to stay home because his cancer medications were arriving today and I had to be here to sign for them.)

All of the lab work came back good and he has not been suffering any side effects to speak of.  Still no pain.  Such good news.

But the best news of all is that today's tests showed that his PSA has come down from 31.06 to 10.23.  The oncologist always tells us that the key thing to go by is how Marshall feels and as long as Marshall feels good we should not get too wrapped up with tracking the PSA, and also that the PSA can bounce around a little on this drug.  But still, coming down to 10.23 is something to rejoice about!

Friday, April 5, 2013

20 days of no pain

Today was the 20th pain free day for Marshall. The weather was gorgeous and he got his trike out and was out all day riding. When he got home he was a little tired, but still had energy.


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Monday, April 1, 2013

16 days of no pain

Another day of no pain and good energy, as well as upbeat mood. Getting out and doing things. Puttering around the house. Getting caught up on things he hasn't been able to do in months.

Is this getting monotonous? Never!!




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Sunday, March 31, 2013

15 days of no pain

Marshall has now had 15 straight days of no pain.

He is having more severe hot flashes but they don't last long. And he thinks that he is more fatigued than he was, say, 4 months ago, before the excruciating pain started. But from my perspective, comparing him to 4 months ago, he is like the Energizer Bunny these days! What a difference.


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Tuesday, March 26, 2013

2-week checkup

Marshall has to be monitored every 2 weeks now that he is on the new drug, Zytiga. Today was the first monitoring visit to the Cancer Center.

We got there at noon and had the lab work done. Then we saw Dr. Flaig's Nurse Practitioner to go over the results.

I have to say that I got very confused at this visit. I usually write everything down and leave with a decent understanding of what's going on but even though the NP was very clear and answered all our questions, I was still confused.

But here's what I think we went over: Marshall's liver and kidney functions were fine (and that's the main thing they are checking). But his calcium levels and Vitamin D levels were low. I think she said that this didn't have anything to do with the Zytiga but instead was associated with the Xgeva (the bone strengthener) injections that he's been getting. One of its side effects is hypocalcemia or low calcium levels.

I also think she said we would maybe delay the next Xgeva injection until we check the Vitamin D and calcium levels again. She said to continue taking the Citracal every day because it has elemental calcium and that's the best kind but that the Citracal should be taken on an empty stomach. This presents a problem. We have so many medications now that can't be taken at the same time and some on an empty stomach, some with food, that we are not sure we can work out a schedule that will fit every dosage instruction. I think I need an Excel spreadsheet. :)

She also said that she prefers he gets as much calcium as possible from food and she gave us a list of food items and their calcium content. But she said to try to not take the Citracal close to the same time he eats a dairy product because it doesn't absorb as well. On the up side, though, on her list of food items that contained elemental calcium is ice cream!

Then she talked about the prednisone. Marshall had gained a few pounds and the NP said that the prednisone could be increasing his appetite and that if he continues to gain weight they will probably need to adjust the prednisone to a lower dosage. My mind is racing -- since the prednisone is a part of the cancer medication team (Zytiga and prednisone), won't it be less than optimal to adjust the prednisone to a lower level? I'm having trouble keeping up.

But we go back in another two weeks -- on April 8 -- for more lab work, and this next time there will also be a PSA test, and I'll try to get a better grip on it then.


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Monday, March 25, 2013

The Scooter Store has gone out of business!!!

Marshall got his power chair from The Scooter Store.  I then ordered several hundred dollars worth of ramps.  I waited three weeks and they didn't come and The Scooter Store didn't respond to my emails and they didn't respond to voicemails.

Today Marshall finally reached someone in Customer Care and they told Marshall that The Scooter Store is basically now out of business.  They have laid off a lot of people and the only department that was going to remain running was the service department.

They said they would forward my request for a refund to their refund department but does anyone think I'll actually see that $250 again?

I paid them through PayPal so I thought I could go to PayPal for help but, oh no, it appears that buying from a PayPal Verified Seller doesn't really mean much.  I have to submit a complaint and wait 45 days for the Seller to reply (since they are out of business that means I'm just waiting 45 days for nothing).  Then I can file a claim with PayPal and they basically go through the same thing and it could take two to three months to even get a response from PayPal as to their final decision with regard to the claim.  I don't have high hopes of getting my money back.

So in the future I won't be using PayPal to pay for anything other than eBay purchases.

PS:  Marshall is still pain free and we had another great day.

Sunday, March 24, 2013

More of the same :)

Just a quick note -- things are still great. No pain. Much more energy. Out and about living life. We love Zytiga.


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Thursday, March 21, 2013

Days 8, 9 and 10 of Zytiga/Prednisone

Tuesday (3/19), Wednesday (3/20) and Thursday (3/21) -- all pain free and active.

On Tuesday, March 26, we go back up to Cancer Center for bloodwork to test for any side effects to liver, kidneys, etc. This bloodwork will need to be done every two weeks as long as he is on Zytiga. They won't do a PSA test until early April because our oncologist says that doing PSA tests too close together is like "chasing your tail."

But we are told that with this drug we should not be concerned if the PSA rises before it goes down. The important thing is how the patient is feeling.


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Monday, March 18, 2013

Days 5, 6 and 7 of Zytiga/Prednisone

Day 5 (Saturday) - horrible day, pain and moodiness

Day 6 (Sunday) - pain seems to be less. And Marshall actually got outside for more than an hour and helped me get the truck ready to trade in. Kelley Blue Book says we can get $25,000 trade-in for the truck. I find that hard to believe.

Day 7 (Monday) - got up early to go to Toyota dealer and see about trading in truck and getting new 4Runner. Woke Marshall up and he was pain free for the first time in weeks and weeks.

Went to Pueblo Toyota, spent hours there making deal for new car (Kelley Blue Book was right!), went to lunch, went shopping, got home around 4:00 ---- and still no pain.

And we now own a Salsa Red Pearl Toyota 4Runner which is plenty big enough to put a hydraulic lift in the back to load Marshall's power chair when we go places!

So he is exhausted but he had a pain free day.






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Friday, March 15, 2013

Day 4 of Zytiga/Prednisone

He still has pain, but it seems like it is lessening just a little bit every day. Still lots of fatigue and long naps.


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Thursday, March 14, 2013

Day 3 of Zytiga/Prednisone

Marshall had some pain today, but it wasn't "over-the-top" like it's been. Can't say for sure yet, but the pain seems to be lessening. His sugar levels dropped this morning during that time period when he needed to keep his stomach empty so we had to call the oncologist's office to see what to do. We spoke to Sarah and she said to give him orange juice and maybe he should consider taking the pills at a different time of day.

And then there's me: I have a nondangerous heart condition called supraventricular tachycardia. It's where sometimes the top of the heart beats at a different rate than the bottom and the pulse gets up over 200. It feels very much like a heart attack, but I know now that it isn't. For me, this comes on when I've been drinking too much coffee, which I have definitely been doing this past year. And the episodes usually start out with me fainting and then the irregular heartbeat lasts about an hour or a little more.

Well, I had one of those tonight and poor Marshall was trying to help me in any way he could from his Power Chair -- we were like the blind leading the blind. It started at 6;30 and at 9:30 the heart rate was still at 185. And I was doing all the silly things the cardiologist had told me to do: plunge my face into a bowl of ice cold water, hold my nose and then blow, cough, etc. Just when we thought the heart was not going to go back into rhythm on its own, all of a sudden it did. Then I was left with a slightly sore chest and a headache.

My sister has a more serious version of this -- atrial fibrillation -- and when her heart goes out of rhythm, she sometimes has to have it shocked back into rhythm. I'm the lucky one....

But guess what? I really think I'm going to be able to give up coffee for good this time. This was a miserable evening.


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