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


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.