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Tuesday, February 26, 2013

Snow and slick roads

It was snowing a little bit this morning and I had planned to go to Canon City today to pick up a few things at Walmart. I took my truck and since it has 4-wheel drive, I decided to take the back road which is mountainous but much shorter. It is a 25-mile drive.

About 12 miles down the road, I hit a patch of ice and slid off into a deep ditch, slid for about 25 or 30 feet, barely missed a rock wall, and veered back up on the road. I saw my "low tire pressure" light come on. It is not a well populated road, but I knew there was a small country restaurant/fire department/cowboy church/combination called The General Store a few miles down the road, so I kept on driving. I made it there and they were closed but they have a nice parking lot where I could assess the damage without being a sitting duck out on a very narrow snowy road.

By that time, I had a flat tire. The running board was broken in half and the driver's door was scratched up. The people who own the General Store (and who also live there) came out and told me to come in and use their phone (there's no cell coverage along that road). So after a few hours, the tow truck came and got my truck and I called another friend who came and picked me up and drove me home.

And here's an interesting side story: Coco goes with me everywhere and when I leave the house he is right behind me waiting to get picked up and put in the truck. Today he followed me out but he absolutely refused to get into the truck. And when I tried to pick him up, he ran back to the house and wanted back in. He simply would not go with me. Very very unusual. Perhaps I should have paid attention??



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Monday, February 25, 2013

X-rays are being scheduled

Heard from Dr. Flaig this evening. He is going to order another round of x-rays for this Friday to see if he can figure out exactly what is causing this leg pain.

Some of the guys on the message boards that I subscribe to say that Xgeva (the bone strengthening injection that Marshall gets once a month) can cause bone pain in some of them and when they switch to a different bone strengthener (like Zometa, which is an intravenous infusion) the bone pain goes away. If the x-rays don't show anything on Friday, we will discuss the Zometa thing.


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Saturday, February 23, 2013

PAIN

Can't seem to get a handle on the pain for any measurable length of time. And now there is also nausea every morning. I've been able to try to be there for him for all of the things that are happening, but I can't handle the nausea. I just can't. When the nausea starts, I run for the hills (disappear into another room of the house). Depressing.

Looking forward to Friday when we see the oncologist again and we will discuss a complete change in treatment. If morphine isn't totally conquering this pain (and adds nausea and constipation to the mix), there has to be another option.


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Thursday, February 21, 2013

Another day of pain control

It was another day of barely keeping ahead of the pain. But for the most part, he stayed ahead of it, even if it did keep him a bit groggy.

We had about 8 inches of snow last night so it was a good day to stay in and look at the beautiful view of snow-covered mountains.


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Wednesday, February 20, 2013

Controlling the pain

Well, the TENS unit didn't really do the trick with regard to pain. But it was a nice try.

Marshall is getting used to his Scooter.

And he has been meeting the pain head-on rather than waiting until it's off the charts and that has been working really well. At least it appears so to me. He takes several Advil when he gets up in the morning and then the second his leg starts to twinge with pain, he takes more medication and then again when he goes to bed. He can't really go anywhere, but at least he is managing the pain.


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Saturday, February 16, 2013

TENS Unit

Today I was doing more endless researching while Marshall was trying to control the heavy pain he had and I found several message boards where guys were using TENS units for pain (I think that's Transcutaneous Electrical Nerve Stimulation). We happen to have one of those things (they really work well on back pain), so we got it out and attached all the leads to Marshall's right leg and turned it on.

He thinks it might be helping, but he's also taken an oycodone, so we'll have to wait a while. If he's still got all this pain on Monday, I'm going to call the acupuncturist here in town. Can't hurt and might help.



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Friday, February 15, 2013

We now have an intercom system

I had to go to Canon City today to pick up a prescription for Marshall so I ran by Radio Shack and bought an intercom system for the house so that Marshall can always find me if he needs me, even in the garage. We got it all set up this evening and it works fine.

Also, he was approved for the Scooter and they will be delivering it on Monday. (Donna, I told him you said he needed to always remember it was a Scooter, not a Harley!!! Maybe we should get him one of those silly looking bike helmets?)

Marshall had a few bouts of pain today but did a pretty good job of staying on top of it.


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Thursday, February 14, 2013

Pain came back a little bit this afternoon

We went to town this morning and saw Dr. Bliss and filled out all the paperwork for the Scooter.  Now we wait to see if he gets accepted.  Next step will be to try to get a ramp built at our front door.

Then we went to a Valentine's Day Breakfast (strawberry banana pancakes with a chocolate covered strawberry -- yum).  Very nice.  And then we picked up our mail and my new purse arrived (see picture below).  I just love it and it's so great that it arrived on Valentine's Day.  The dachshund on the right really resembles my little guy Coco.  I just love this bag, it was a highlight of the day.
But when we got home, Marshall was in pain again, after six good days, and he needed some morphine.  He felt better in an hour so we hope that if we just stay on top of the pain we can keep it at bay.  The doctor keeps telling us not to chase the pain, but to hit it head on.  We still need to get in a better routine with regard to that.

I think that for both of us, the pain is a reminder of the cancer and we are of course happier when there's no pain to remind us of the cancer, if that makes any sense.  But we are doing better all the time in accepting the fact that there will always be times of pain and then acting on it rather than letting it get us down.

Wednesday, February 13, 2013

Day Six -- Little or no pain

Another day of very little pain, maybe just a little arthritis acting up. Of course, he is staying off that right leg for the most part, but we did go to town today to meet with the accountant to get our taxes started and he had no problems other than fatigue.

We're also watching our diet so he can bring his body mass index down before our visit to the oncologist on March 1st.

If I didn't mention it before, we started the process of getting a Scooter (one of those cool motorized chairs) and it has been approved by Medicare, so tomorrow we have an appointment with our primary care physician to do the paperwork. Having that Scooter will give Marshall more of a sense of independence knowing that he can get around if his leg gives out and I'm not here.

And the Rotary Club in town has a van for sale with a wheelchair lift. We went and looked at it and we're thinking of taking it for a test drive. He doesn't need it at this point, but it is a good price and we are trying to think about the future. It doesn't have 4-wheel drive but one of the guys who has been driving it says it manages really well on our back roads. We will have to give that more thought....


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Tuesday, February 12, 2013

Day Five of little or no pain

We just finished Day Five of very little pain. He was able to go to town, get a haircut and go to lunch before the fatigue set in. And then we came home. He had a little pain around 9:00PM (but everyone watching all three State of the Union addresses probably experienced one sort of pain or another, right?). A few Advil took care of that.


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Monday, February 11, 2013

A possible snag in the clinical study

I already have an update. Our oncologist, Dr. Flaig, called this evening to say that there's a chance Marshall won't qualify for the clinical study of GTX-758 because of his weight. He says that one of the requirements to be enrolled in this study is a body mass index of 35 or less and he looked at Marshall's records and said it was going to be very very close.

So I found a BMI calculator online and the way we figure it, Marshall's BMI right at this moment is 34.8. So we have determined that we are going to really watch our diets between now and March 1st to be sure that at least he will pass that hurdle. Dr. Flaig said that he thinks this drug is going to be the drug of the future in the fight against prostate cancer so we are very excited about it! (Talk about an incentive to diet and exercise....)



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Sunday, February 10, 2013

Oops, I spoke too soon regarding radiation...

Last night around midnight we got a message from Dr. Flaig saying that he reviewed the scans again and spoke to Radiation Oncology and, considering the intermittent nature of the leg pain, he does NOT feel strongly about more radiation right now.  He said that if the pain becomes worse -- or more steady -- we can revisit this issue.  So no more radiation just yet.

So we feel pretty good about that decision.  Marshall has had very little pain in the past several days (and the minute he feels a pain, we get on top of it with Advil) and that has put both of us in a more calm good mood!  We are relaxing this weekend and catching up on chores that were left undone (one of which is working on the tax return!)

Friday, February 8, 2013

I guess radiation is in our future after all

We got home today early afternoon to find a voicemail from the Radiation Oncology Department of the University Hospital saying we needed to schedule an appointment to set up radiation treatments to Marshall's right leg. Dr. Flaig had told us that he didn't think radiation was necessary right now but that he was going to show Marshall's x-rays and scans to a radiation oncologist just to be sure.

So I guess they have decided radiation is in order after all. I called and made an appointment for February 20.


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Thursday, February 7, 2013

A long tiring day of tests

I'm going to go into a lot of detail in this post for the prostate cancer survivors that follow our travels. It might get pretty boring to anyone else!
I got up at 4AM this morning to get to Denver in time to be with Marshall for his tests. When I got here, I found that he had been nauseous all morning, couldn't keep any food down (not even coffee), and couldn't take his meds. Not a good start to this day.

We got over to the Radiation/Nuclear Medicine Department by 9:00AM and Marshall was so exhausted from the nausea that we needed a wheelchair immediately.

They took him back for x-rays of the femur. It was supposed to be quick, but they had equipment problems and it took over an hour. I was sitting in the waiting room wondering where the heck he went.

They brought him back to me with a bucket in his lap, so I knew the nausea had not let up.

He drank the contrast material for the CT scan and they inserted the IV for the injectable contrast. I kind of got fuzzy on which test these contrast materials were for.

He finally went for the CT scan around 11:30 and then at 12:30 he went for the full body bone scan (the sign said "Nuclear - PET.") The technician doing the full body scan asked Marshall if he had injured his back since the last bone scan.

By this time he was exhausted and he still hadn't eaten anything. I went to the cafeteria and got him some Saltines.

At 2:00 we showed up for our visit with the oncologist and when they saw him come through the door in a wheelchair with a bucket in his lap, they quickly found him a private room (they didn't need a waiting room full of nauseated people!). They gave him a Zofran (anti-nausea pill) which helped a lot. Their verdict was that the nausea was caused by the opiates (oxycodone and morphine) he was taking yesterday on an empty stomach. They stressed that he needed to take pain meds with food.

Then Dr. Flaig and Dr. Breaker came in and went over all the tests. If you remember, we just had most of these tests done at the emergency room last week where the emergency room doctor told Marshall that "a fracture was imminent" and that he should get a wheelchair and stay off of that leg.
Our first question for the doctors was why did the technician think that Marshall had a back injury -- what showed up in the scan? Dr. Flaig said that the radiation that was done to that area of the spine in December caused it to "light up" more than usual. We had a little laugh about glowing in the dark.....

Then in no particular order:

**The tests definitely did NOT show signs of an imminent fracture. In fact, quite the opposite. They said the left leg looked good and the bone structure looked strong and healthy. There was cancer present but it was not causing any problems with the integrity of the left femur. The right leg -- the one that has been giving him excruciating pain -- does not show any increase in cancer and looks pretty much the same as it did on the last tests several months ago. I don't know if I can describe this in correct terms, but I understood Dr. Flaig to say that the femur in the right leg had cancer inside it, but the outer sheath was stable and showed absolutely no signs of the cancer breaking through it and causing a break or a fracture. He said, of course, anything can happen, but he sees no signs whatsoever of imminent fracture.

**As to what is causing the pain, both Dr. Flaig and Dr. Breaker said it would be very unusual for cancer pain to come and go the way Marshall's pain has been behaving. They believe that it is possible that the intermittent pain is being caused by the withdrawal of the Casodex (the drug Marshall was taking for a few months and they discontinued three or four weeks ago).

**We are scheduled to come back to see Dr. Flaig on March 1st for a PSA test to see if the withdrawal of the Casodex caused a drop in the PSA (which happens in 30% of men when Casodex is withdrawn). So they want Marshall to persevere with the pain until then by using the oxycodone and/or morphine as soon as the pain starts. The pain may start to fade away as the Casodex fully works its way out of his system.

**On March 1st, if we learn that the withdrawal of the Casodex has caused a drop in the PSA, and if the pain has started to letup, we will probably continue with just the Lupron hormone therapy and the Xgeva bone strengthener. However, if the PSA has gone up -- and Dr. Breaker says she feels like it probably has -- Dr. Flaig wants to put Marshall in a clinical study of an estrogen therapy called GTX. They gave us a packet of information to bring home and read. This would not be a blind study -- all of the participants would be getting the actual drug and they would be very closely monitored. Dr. Flaig is the study's leader.

Dr. Flaig says that two pluses of the estrogen therapy are (1) the hot flashes would let up -- which is a huge selling point for Marshall (ha); and (2) it is a bone strengthener. As I read up on this estrogen therapy (which, by the way, would be given in addition to the Lupron and the Xgeva), I will try to get some information here on the blog for those who are interested. The only men who qualify for this study are those men whose PSA is rising and not responding to just the Lupron. So far, without reading the packet of materials, I really like the idea of being closely monitored. So we'll see.

So we are both feeling much much better about things right now. The doctor in the emergency room last week had Marshall at death's door and it only took 30 minutes with Dr. Flaig and Dr. Breaker to do a reality check and get us all calmed down.


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Wednesday, February 6, 2013

More tests, maybe more radiation

I had to go to Pueblo early this morning to see my dermatologist and while I was gone, the oncologist called Marshall and told him to get up to the hospital today if possible to get more tests to see what's causing all this femur pain.

So Marshall has a bunch of tests scheduled starting early tomorrow morning (MRI, CT, PET and PSA). So he took off for Denver to get a room for the night so he'll hopefully get a little rest before the busy day. I hope his leg handles the drive.

Dr. Flaig says that if radiation to the femur is called for, they will start it right away, so I have no idea how long Marshall will be in Denver.

Our wonderful neighbors who usually go above and beyond to help us by taking care of the boys are losing their beloved dog to leukemia this week so they are dealing with their own sadness right now. (Dave and Cathy, our hearts go out to you.)

So my friend Mary is going to come over and take care of the boys several times a day tomorrow and Friday so that I can be with Marshall. We are so thankful for all of the good friends who help out and email us and give us so much support. We love you all!



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Tuesday, February 5, 2013

New tests on the horizon

Dr. Flaig called today and chatted with Marshall for a while.  He is guessing that the cancer is moving down the leg causing the excruciating pain and it is very possible that there will be more radiation.

His office will call us in the next day or two to set up more tests and scans and if radiation is called for, it will probably start the same day as the tests.

Stay tuned.

Monday, February 4, 2013

The weekend was nice

Marshall really enjoyed the time with his daughter, but all good things must come to an end. I took Tanya to the airport this morning. Marshall didn't go because his leg was hurting.

By the time I got back home this afternoon, his leg was hurting a lot. He took Advil but it didn't really have any effect, so he took an oxycodone and that doesn't seem to be helping either. We are still waiting to hear from the oncologist about setting up more scans to see what the next move should be.


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Sunday, February 3, 2013

Happy Birthday to Marshall!

Tanya arrived in Colorado Springs on Marshall's birthday (Feb 1), but because of flight cancellations and delays, she didn't actually arrive at our home until the wee hours of Feb 2.

On Saturday, I bummed around with a friend all day (spent a bunch of money shopping, very cathartic) and Marshall and Tanya went out to eat and spent a nice day together catching up.

This morning (Super Bowl Sunday) we went out to breakfast and then we took the trike and had a short photo shoot (smile).

Beautiful mountain backdrop.




Marshall and Tanya

Marlee and Okie vying for Tanya's attention.
Now we are going to watch the Super Bowl!  Tanya leaves to go back to Richmond tomorrow morning.