Wednesday, May 28, 2014

Primary care physician

I forgot to mention the best news of all! Marshall got a call a few days ago from the Lincare people (they provide his oxygen) telling him that they thought he would want to know that his primary care physician -- Dr. Bliss -- who left our local clinic rather abruptly several weeks ago, is now practicing at a clinic in Florence, Colorado, which is only about 35 miles from Westcliffe.

So we called and made an appointment for June 12 and then I went over to our local clinic and picked up all of Marshall's records to take with us on the 12th. We have no idea what happened between Dr. Bliss and our local clinic (he had been with them for a lot of years), but perhaps it had something to do with the fact that the clinic may have to shut down for mismanagement reasons.

At any rate, we have our wonderful primary care doctor back and the world is looking much better.

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The VA keeps surprising us

We are still getting packages from the VA. In the past two weeks we received a raised toilet seat and a wheelchair (in anticipation of a time when Marshall may need a wheelchair). We are still waiting to hear from them with regard to extra money for "aid and attendance" (to help pay people who can help around the house) and for my application for health insurance (which I am entitled to through Marshall's 100% disability rating). But things are moving along.

We finally found someone to clean house. She came last week and spent two days doing "spring cleaning" and now she will come back every two weeks. How wonderful that is!

Yesterday we got a call from the specialist pharmacy that provides Marshall's cancer drug, Zytiga. The Zytiga costs about $5,000 a month and our co-pay for the past year has been $166 a month. Well, they told us yesterday that they wanted to offer to put us on their savings plan where our co-pay would only be $10 a month. She asked me if I was interested. I asked her if there was any reason I wouldn't want to do that and she said no reason that she could think of (duh). So she put in the application and if we don't hear otherwise, next month we will only pay $10 instead of $166. That was great news.

On June 5 we head to Ohio for 5 days for Marshall's 50th high school class reunion. This will be the first time we have flown anywhere with Marshall's huge amount of medications, so I'll be a little nervous but it will be good to see how it is handled before we go to Europe in September.

When we get back on the 10th, we will spend the night in Denver so we can go to Marshall's dental appointment on the 11th and start the process for new dentures to see if they can be made in a way that he can wear them without pain.

That's it for today.

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Saturday, May 24, 2014

Bad day yesterday

Well, yesterday was one of MY worst "Marshall" days since this journey began -- not because it hasn't happened before, but because I am wound much tighter as time goes on and while he has the outlet of yelling at the world sometimes, I don't have an outlet like that.

He had an appointment yesterday with our primary care physician to follow up on the oxygen thing.  Our little clinic (along with the ambulance service) is in danger of being closed due to mismanagement of funds and our wonderful doctor of the past two years left suddenly a few weeks ago.  It's front page headlines in our little paper every week.  So we have a new doctor to get used to, at least as long as the clinic is still open.  And for someone in Marshall's condition, this is tough.

On Thursday the clinic called and said we needed to bring ALL of Marshall's medications with us to the visit, in their original bottles, or the doctor would not see us.  Now with most people, they can bring all their medications in a little baggie.  Marshall's medications need a banker's box.  And if we were to lose Marshall's medications, it would cost us around $6,000 to replace.

So we started out with Marshall being "edgy."  When we checked in, they asked to see his driver's license.  For God's sake, this town has about 700 people and we are there twice a month, what in the world could be the reason to ask for ID every visit.  So Marshall got more edgy.

They were 30 minutes late calling us in (can you see the "edginess" growing?) and we are lugging his big pile of medications, which as of yet, no one has asked to see.

The nurse starts taking Marshall's vitals.  His oxygen level is 89 (not good) and his blood pressure is high (not surprising).  Then she looks at her computer and asks if there is any change in medication.  It is clear that she is not going to ask to see the big thing of bottles we brought in.  That's when the edginess turned into full-fledged rage.  He told her, in a raised voice, slamming his hand on the counter, "By God, you are going to look at every one of these bottles, every single one of them!!  You made us bring them in and you are going to look at them!"  She said, "Oh, I didn't know you brought them" (she must be blind to not see what I was carrying).  That comment put him over the top.  He said, "We were told the doctor wouldn't see us if we didn't bring them, so damn it, you are going to look at them."  The nurse told him she would not be spoken to in that way and he stormed out of the exam room and out of the clinic, slamming the waiting room door so strongly that the people waiting were quite alarmed.

By then I was crying and I stopped in the waiting room to explain to everyone the reason for his outburst.  One woman told me that she comes in weekly and they still ask for her driver's license and insurance card every single time.

I understand totally where Marshall is coming from, I just don't like his methods.  It embarrasses me and makes me less and less inclined to want to be at these doctor visits with him. The girl at the front desk who asks for the driver's license and the nurse taking the vitals are just doing what they are told to do.  There is no reason to yell at them.

I also know that Marshall is on hormone therapy and, just like women going through menopause, he sometimes cannot control his emotions.  I've been there.  But knowing that doesn't help when my stress level is pretty high, too.

So now we have no primary care doctor and we have his low oxygen levels to figure out as well as the high blood pressure reading.  And my frame of mind needs an attitude adjustment before I can even want to try to solve this little problem.  To find a new primary care doctor means driving 60 miles (one way) for every visit.

The low oxygen thing means there is a possibility we will have to consider moving to a lower altitude and the thought of moving, on top of everything else, is more than I can handle at the moment.

I try not to blog about days like this because it is counterproductive, but guess what!  Today this blog is my outlet!

But this, too, shall pass.  Today will be better.  I hope everyone has a great Memorial Day weekend -- and I hope we do, too!

Wednesday, May 21, 2014


Today was our trip back up to Denver to see a dentist at the University of Colorado who specializes in cancer patients. We spent about an hour with him and it is his opinion that Marshall just needs to get new dentures and that the major problems Marshall has been having are most likely caused by his present dentures.

So we go back on June 11 to start the ball rolling on the new dentures.

Other than that, things are going along nicely. Tomorrow I plan to spend the day with a girlfriend bumming around in Florence, Colorado, a town with blocks and blocks of antique stores.

One of the things Marshall has really been wanting to do is take a European river cruise, so today we contacted a travel agent and we are trying to put a trip together for sometime in late September or early October -- a trip down the Danube River. Very exciting.

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Monday, May 19, 2014

Next appointment at Cancer Center

When we saw the oncologist last week, he said that he wanted to do full scans on Marshall again to be sure that the lab work and the scans are all on the same page.

So on June 16 we go back for several days to get CT scan and bone scan, then more lab work, and then see the oncologist to get the results.

And this Wednesday, May 21, we go back up there for Marshall to see their dentist.

Thursday, May 15, 2014

PSA went back down!!

All lab work was excellent today. And even better, the PSA went down from 4.6 to 3.72. And we spent the night up here last night and had a very relaxing and quiet evening. It's been a great two days!

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Monday, May 12, 2014

No Cancer Center today

This is what we woke up to -- and I understand Denver is pretty bad, too, so we are officially snowed in.  But in Colorado it melts fast, so by tomorrow this will probably be gone.  Springtime in the Rockies!!

We have rescheduled the Cancer Center for May 22 -- and if they happen to have an opening sooner than that, they will call us.

Sunday, May 11, 2014

Tomorrow's Cancer Center Visit

Well, tomorrow is our monthly date with the Cancer Center, but it started snowing today and it looks like we will get 10 to 12 inches. And on the news we hear that Denver is getting hammered, too. So first thing tomorrow I will be calling to try to reschedule. We hate to have to do that because when you get your mind set on a checkup date it's hard to put it off but I sure don't want to make that long trip in this kind of weather.

Yesterday Marshall sent me over to Canon City to get a massage and other pampering. It felt SO good.

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Thursday, May 8, 2014

VA came out to measure for wheelchair ramp

The VA sent two guys out on Monday to measure for a ramp. They said it would probably be a few weeks before they would come back to install it.

Then Tuesday we received a big box with some of the other things the VA promised: raised toilet seat, grip bars to use in the other bathroom, handheld shower wand, and a few other items that are supposed to help Marshall get dressed since he can't bend over. A long thingie that helps put socks on and off, another long thingie that helps put clothes on and off, a long shoehorn, stretchy shoelaces that never need to be untied, a long-handled sponge. etc. They are kind of funny to look at and there will probably be a little giggling involved when he tries to get used to using these things. (He does not really need most of them now, but we want to be prepared for possible future needs...)

Then some sad news -- a fellow prostate cancer patient that Marshall has been talking to weekly -- is losing his battle with the cancer. He went into hospice this past week and we talked to his wife today and he is fading fast. Marshall will really miss him. They had some wonderful long talks and shared their cancer journeys. Very depressing.

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Saturday, May 3, 2014

VA came through like gangbusters!

Every day is like Christmas. First, we got a call that manual wheelchair is being shipped.

Yesterday a man came out and installed grab bars in the shower and next to the toilet.

Today we received the FreedomAlert system (like Life Alert), fully paid for by the VA.

Monday they are sending someone out to measure for a ramp.

So things are progressing with the VA.

Yesterday we got a call from a dentist at the University of Colorado. Our wonderful oncologist followed through on the dental issues Marshall has been having and he arranged a consult with this dentist to see if there is anything that can be done. We go for that consult on May 21.

But our primary care physician is leaving his practice suddenly and we are devastated about that. We love him. So now we have a new PCP to get used to.

Marshall's nausea has let up as far as first thing in the morning goes, but he still gets nauseous later in the day. I am trying my best to keep just a little bit of food in his stomach during the day because I think that would help but he simply won't eat anything until the evening and then he chows down pretty good. Oh well, what will be, will be.

Today the weather is absolutely gorgeous so he just left to go for a ride. Should do him good. He's been chomping at the bit all winter to get back on that motorcycle.

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