Statistics

We went to breakfast and then came home and watched funny DVDs all day. Then I spent more time researching and came up with the following that I really like:

How reliable statistics are
No statistics can tell you what will happen to you. Your cancer is unique - for example, the same type of cancer can grow at different rates in different people. The statistics are not detailed enough to tell you about the different treatments people may have had. And how that treatment may have affected their prognosis. Many individual factors will determine your treatment and prognosis.

Remember - statistics are always slightly out of date. As with all statistics, do remember that it takes quite a long time to bring them all together. So they don’t always reflect newer developments in treatment. Specialists now use treatments such as chemotherapy and bisphosphonate treatment for advanced prostate cancer. Most statistics are unlikely to take these new treatments into account. Our specialists tell us that the outlook is improving all the time.

An active and tiring day

We are both exhausted!  We went to the open house for the new veterinarian this morning and were able to pass out flyers for Pet Project's spay/neuter program.

Then lunch.

Then over to the Share Center where we spent the afternoon distributing cat and dog food to people who are on hard times.  It was sunny, cool and very windy so we were outside on a beautiful day.  I think we distributed about 400 pounds of pet food today.

Then we stopped at a martial arts place in town that works with Wounded Warriors.  We wanted to see if they taught tai chi because I've read that tai chi would be very good for Marshall's bone strength and balance.  It turns out they don't teach tai chi but they offered him a stretching program which we may sign up for once the oncologist tells us what type of exercise he recommends.

By the time we got home Marshall was having some back pain and some rib pain in the areas where the cancer is but he said it didn't feel like bone pain, just more like twinges.  So he probably just needs to rest.

Now we are just being couch potatoes for the rest of the evening.

Animal rescue volunteer work

For the past two months, we have been unable to keep up with our volunteer work with Pet Project, but Marshall has been feeling pretty good, so tomorrow we are going to resume our pet food distribution to people who are having trouble feeding their pets.  We do this on the last Friday of each month. 

And we are also going to attend the Open House of a new veterinarian who just moved to Westcliffe and we will hand out flyers for our low cost spay/neuter vouchers.  Marshall has been getting a little nervous about his upcoming visit to the oncologist on Monday so tomorrow should keep him busy enough so that his mind won't wander too much.

We also did a little advance planning (yay, advance planning is a good thing) and made reservations to spend the 2012 Christmas holiday at Gaston's Resort in Lakeview, Arkansas, on the White River.  We've done this for 5 or 6 years and we always have a great time.  My family joins us and the menfolk go out and fish and then they cook a delicious fish dinner on Christmas Eve.  The weather has always been mild and we have such a good time.  Here are some photos:


Ed fishing near the steps to our cottage's deck



Ed with a small part of his "catch" -- and part of our dinner



Marshall and Ed coming back from fishing



Liz and Tricia

(1) Patient Advocate for the VA; (2) Greenhouse

We are starting to get our first bills for the emergency room and hospital stay, and we see that instead of the bills being covered by the VA, like they were supposed to, the hospital billed Medicare.  When we were on our way to the emergency room back on March 14, Marshall had called the VA and they agreed to cover all costs.  We reminded every provider along the line (emergency room, hospital, etc.) but still, the bill went to Medicare.  So we went to Pueblo today and Marshall visited with the VA's patient advocate.  She is going to do her best to get this straightened out.  It really doesn't matter as far as what we will end up paying, but it's the principle of the thing.

While we were in Pueblo, we stopped and bought a few tomato plants and when we got home, we planted them in our greenhouse.  We got the greenhouse last year and we couldn't keep anything alive in there last year -- the temperature gets up to 160 degrees.  So, as you can see from the photo, we got creative and took sections of a doggie enclosure and made sort of a "screen door" out of them so that there is more air flow.  We also now have a thermometer in the greenhouse that we can monitor from the house.  So if we open the doors in the morning and close them at night, we are hoping we can control the temp -- there is also a pane in the ceiling that opens automatically based on the temp.

In case you are wondering, we haven't installed any electric fans or thermostats because we use solar power and need to be careful with our power usage.  And we can't simply open the doors without a "screen door" because the deer would gather there for dinner every day.  We learned that with our roses.

We are going to need to really watch what we eat.  According to the oncologist, Marshall's diet will be more important than even exercise.  And the more produce we can grow ourselves, the healthier it will be.  And my hours and hours of research tell me that tomatoes are a wonderful food for the prostate.  So we are starting with tomatoes.

PS:  Marshall wants me to mention that the Beauty Contest he was in for the Viking Lodge was for charity!

Viking Lodge - Tinley Park, Illinois

We have been hearing from our old Lodge buddies in Tinley Park, Illinois, and they are reminding us of the fun we had over the years at that lodge.  We may have lost a few brain cells in the process, but boy, it was fun.  Belly laughs galore.

Pictures speak louder than words -- see if you can find Marshall in these photos!


Luau



Western Night



Beauty Contest

A lovely Sunday

We went to breakfast this morning with some neighbors. A new restaurant opened in town called Maverick's and so far we are really liking it. They are experimenting with serving breakfast to see if they get enough business to make it worthwhile and we sure hope it works out. The choices down here are slim.

When we got home Marshall did some more Internet searching for a motorcycle (trike) and found a Harley that sounded good. He called the owner, who lives near Denver in Westminster, and the owner is waiting on one other person to come and look at the bike. They are coming from Utah so it will be a few weeks. He will call us if they don't buy it.

We also did more planning with our greenhouse and will probably get some tomato plants this week and see if we can actually grow something in that greenhouse. We have a LOT to learn about managing the temperature! Marshall felt good today ... except for the ever-present fatigue ...but the fatigue is better than pain.

Small meltdown today... :)

Marshall woke up with back pain this morning and a bit of incontinence ... put us into a small meltdown.  But we realized that occasional incontinence is a side effect of the hormone shots and back pain is something that he's been plagued with for years.

So we tried to calm down, took a nice walk and felt much better!

PS:  Another side effect reared its head today -- hot flashes!!  (I have a hard time being sympathetic towards that one....)

Quiet days ... nothing to report

We are having a series of very quiet days.  Nothing new to report.

The VA didn't do a PSA test

When Marshall had lab work done at the VA last week, the doctor said he would order a PSA test, so we've been kind of counting the days.  Today Marshall contacted the VA and the nurse said that no PSA test was requested.  The good old VA.....  So we can quit holding our breaths for those results and now we wait until we go back to the University of Colorado on April 30 before we find out if the PSA has gone down.  It would have really been nice to get that early "sneak peek," but oh well....

I was doing more research today and came across the name Mike Milken.  He was a junk bond dealer back in the 70s and 80s and went to prison for a few years.  After he got out of prison in 1993, he was diagnosed with advanced prostate cancer and his doctors told him he had about 12 to 18 months to live and he should get his affairs in order.

Well, this is a really encouraging story.  First of all, he opted for the same treatment that Marshall is now getting -- the hormone therapy -- and then he had radiation.  Also, he decided to do everything possible in his lifestyle to beat the cancer and he went to a vegetarian diet, no fat, no dairy, lots of fruits and veggies, and exercise.  In addition, since he was/is one of the richest men in America, he founded the Prostate Cancer Foundation and he has been awarding grants to scientists to find a cure for prostate cancer.  The main requirement of his grants is that the people who get the grants bring their research results back to him and the people around him, so it's one great big give-and-take.

It is now about 18 years after Mr. Milken's initial diagnosis and he is still cancer free.

He has also written a cookbook, along with a friend of his, with lots of recipes and delicious ways to give up red meat and dairy.  I have the cookbook and once we see our oncologist on April 30 and discuss diet with him, I'm going to start a whole new way of eating for our household.

So even though not getting that early peek at the PSA levels was a downer, this was a pretty "up" day.

Busy two days (and no PSA results yet!)

Yesterday, we took Kevin and Angie to a late breakfast.  When we got back to the house, Kevin and Marshall took the chainsaw down our road and trimmed some trees that were starting to hang into the road and become nuisances.  Then Kevin and Angie headed back to Denver.  It was a very nice visit.

Today Marshall had an appointment with his ophthalmologist in Canon City to see if there was any reason the cancer treatments would cause a problem with getting cataracts removed.  The eye doctor said he didn't see any reason why it couldn't be done, but he wants us to check with the oncologist first.

After we left the eye doctor, we went to lunch and then we went grocery shopping.  By this time, Marshall was getting very exhausted.  I'm thinking he was more active these past two days than he's been in a while, so it just caught up with him.

Still no results from the VA on the PSA test.  Can't help but be a little impatient....

Family visit

Marshall's great-nephew Kevin (and his fiance Angela) came to visit for a few days.  Good food, good company, a very nice visit.

Marshall is still feeling good and we have been very active doing all the things we usually do, so that's good.

And even though the Cardinals lost their home opener versus the Cubs, they compensated by beating the Cubbies Saturday and Sunday!!

The Cardinals lost their home opener...

A very quiet uneventful day. We watched the St. Louis Cardinals home opener and they were slammed...by the Chicago Cubs!

Motorcycle

Just a few days before we got the cancer diagnosis, we had picked out a trike and were pretty sure we were going to buy it.  Then we got the diagnosis and the trike became unimportant.

Today we talked about it again and I think we are going to go ahead and start looking again.  It's something we both enjoy -- and more importantly, it's something Marshall is passionate about.  So stay tuned!  Peak riding season is almost here.

Appointments in Pueblo

We went to Pueblo for some regular shopping as well as an appointment Marshall had with his VA doctor. It was an appointment that was made back in February while we were still blissfully unaware of the impending cancer diagnosis. He goes regularly just to be sure he stays in the system because he is eligible for some benefits and doesn't want to be dropped.

The doctor was wonderful. He took down all the pain medications Marshall is subject to need and is approving them to be covered through the VA. He said if there were more, Marshall should just call in and he will try to approve them, too. They also did lab work so that means we will get to find out the PSA level before our next visit to the oncologist. We should know within the next five or six days if the PSA level is being lowered by the hormone treatments. We will try not to hold our breaths... :)

Then when we were done at the VA we decided to run over to the Dorcy Cancer Center to check on a prostate cancer support group that meets there. Everyone there was so nice. We left there with stacks of literature and cookbooks for cancer patients and we will go back on May 15 for the support group meeting.

Marshall's energy level stayed up today and the weather was nice so it was a really nice day!

A nice, normal day

We went to breakfast this morning like we used to do regularly; then I met three friends for lunch; and when I got home Marshall and I worked cleaning out the garage for a while.  Very nice normal stuff.  How good that feels.

And my job is helping me to stay very sane and normal as well.  I love it!  Fred went to Los Angeles for the Dodgers opening game (he was invited to sit in the Club Box) so Marshall and I watched the Dodgers game this afternoon to see if we saw Fred.  We didn't, but it was fun watching the game.

This afternoon, though, Marshall got a sore throat so of course I headed straight to the internet.  My research did not indicate that a sore throat could be a side effect of the hormone treatments, so I calmed down a bit.  We are assuming it's just a regular old sore throat and if it gets worse, he'll see the doctor at the clinic.

Tomorrow we're going to Pueblo for some appointments -- something else we did regularly -- so it should be another nice normal day!  I could get used to this.....

Agent Orange Application

We met with the VA representative this morning, gave her all of the medical reports and filled out the application for benefits.  The rep told us that it should be a slam dunk and we should hear from the VA as soon as the paperwork goes through their bureaucracy.

One good part of this is that it will bring in more money every month that could come in very handy with regard to any future bills.  Another good part is that if Marshall is granted permanent benefits for Agent Orange, it will mean that when he dies, his benefits will go to me.  There is a little twist in there, though, that you always expect with regard to the VA -- in order for me to get any spouse benefits after his death, he will have had to die of prostate cancer.  In other words, if he dies in a car accident, the benefits are terminated and I am not entitled to anything.

Also, if he is granted permanent benefits, he is entitled to a $10,000 life insurance policy.  That will be a good thing.

If he is not granted permanent benefits, he will get temporary benefits, which means that they will pay benefits for six months and then re-evaluate and if he should go into remission, the benefits are stopped.  The rep wasn't sure exactly what "remission" meant.  We are very hopeful that Marshall will have a long period of remission, but the cancer is still not curable.  The rep felt that the word "remission" meant that a person was given a good prognosis to begin with.  If the initial prognosis is "incurable," then a few years of not needing treatment is not necessarily a remission.  Semantics.   We will take it a day at a time.

We spent the rest of the day enjoying the absolutely gorgeous weather we are having here in the mountains.

Happy Easter!

Today was a gorgeous day, a perfect Easter Sunday. We went to the neighbor's for a lovely dinner and ate a little too much. It was a little slice of "normal" and it felt so nice. But Marshall got pretty tired and we were home by 5:30 to relax with the boys. Tomorrow we have a meeting at 10:30 with the VA rep to apply for Agent Orange benefits. Happy Easter!

Laughter is a great medicine

We have been getting a lot of "breaks" in the what-ifs by watching the videos that were sent by friends.  Laughter is such a good medicine.

And my cousin Tom (who lives in Minnesota and who has been battling Stave 4 non-Hodgkins Lymphoma for five years now) sent us a book by comedian Robert Schimmel called "Cancer on $5 A Day."  I opened it up and started reading randomly and we laughed so hard we were crying.  And it's stuff that a person would not ordinarily think was funny (vomiting, mouth sores, and other yukky stuff) but somehow in this situation it is just side-splitting.

***************
An excerpt:

During a hospitalization, I'm sitting up in bed, waiting for the doctor to check me out of the hospital, when the door opens and a man pokes his head in.

     "Mr. Schimmel, my name is Steve Blauner, do you have a moment?"

     "Jesus, I hope so.  Come on in."

     Steve has a head of shiny black hair that rests on his head like a dead animal.  Talk about a bad wig.  This guy's wearing a possum on his head that looks like it just came out of Earl Scheib.

     "I'll cut right to the chase.  I'm a wig salesman."

*****************
Another excerpt:

I see my doctor for a once-over and I want to mention my list of horrifying side effects, the worst of which, without a doubt, are the hemorrhoids.  They are killing me.  It's like Al Qaeda living in my rear end.  The door opens and the most gorgeous nurse I've ever seen walks in.

     "I'm Meredith.  I'll be doing your preliminary.  Are you having any side effects?"

     "A couple.  Minor stuff.  Nothing I can't handle."

     "Does it burn when you urinate?"

     "Me?  No.  Not at all.  Sometimes."  She wants me, I can tell she wants me.

     "Hemorrhoids?"

     "No.  None.  Zero.  Clean as a whistle."

     "Okay, that's it, then, the doctor will be right in."

     Dr. Mehldau:  "So no hemorrhoids yet?"

     "Have you seen Meredith?  Then you know I can't tell her I have hemorrhoids. ... 'Hello, Meredith, I'm Robert, I have a horrible case of hemorrhoids.  Would you like to go out?'  I don't think so."

************************

So you see what I mean -- a very funny book.  All of these diversions are really wonderful for us.

The jelly beans were great (thanks, Catherine) and the puffy stickers brought smiles (thanks, Tricia).  A neighbor plowed our half-mile drive when we had the two feet of snow earlier this week.

Today Marshall got on the treadmill for a while.  Weight bearing exercise is going to be crucial to his bone health during his treatments, so I was beside myself happy that he did that.

We are going to lunch with friends today and tomorrow we've been invited to the neighbor's house for Easter dinner.

God Bless all of you this Easter weekend!

Agent Orange

In order to keep my sanity, I have been spending hours and hours doing internet research and I have learned that one of the big risk factors for advanced prostate cancer is being exposed to Agent Orange between approximately 1969 and 1975.  Which Marshall was.

So further research shows that he is entitled to money from the VA for having gotten this cancer.  That is not much of a consolation, but it could amount to a nice monthly check.  So he is going to contact the local VA rep and get that paperwork started.  Every little bit will help.

Biopsy results

The urologist just called with the biopsy results.  No surprises.  It is an aggressive cancer.  I guess we were still kind of hoping for a little break, like maybe the cancer would at least be an intermediate one, but at least we now have the biopsy over with.  Dr. Maroni says Marshall will stay on the same treatment -- hormone injections -- for the time being.  When they stop working, they will move on to other treatments, maybe chemo, maybe clinical trials.

We go back on April 30 for another hormone injection and some lab work to see how well the first series of shots worked.

Even though this news was not unexpected, it was a bit depressing and we hugged and cried for a little while.  I have a feeling the rest of April is going to be tentative and then after we go back on April 30, hopefully we can get in a better frame of mind and start getting out and doing some fun things. 

Medication Mishap

This morning I woke up in a huge panic.  I realized I have not been giving Marshall his antibiotic!!  When he had the biopsy, the urologist stressed that an antibiotic was critical because the biopsy goes through some yukky areas and the risk of infection is higher than normal.  Marshall hasn't been in a frame of mind to deal with his regular medications (diabetes, blood pressure, acid reflux, and a few others), so I've been making sure he gets his twice-daily meds, as well as his insulin shot and whenever he needs a pain pill, BUT I FORGOT THE ANTIBIOTIC!  I cannot believe I did this.

I left an urgent message for the urologist's nurse.  She called back within 30 minutes and said that as long as he's feeling okay, and there's no fever, all is well.  In other words, I haven't managed to kill him yet.....good grief.  What a way to wake up.

View from deck

So after getting that fire drill out of the way, I let the dogs out and noticed that it snowed another six inches last night.  We probably got a total of close to two feet of snow.  Much needed moisture for our area ... the forest fire danger is really high this year because everything is so dry.  And it's especially nice when we can sit at home and look out the window rather than needing to go anywhere.

Yardstick on deck -- 13 inches

Tanya went back to Virginia

When Tanya got here last week, it was warm and sunny.  When we woke up this morning -- the day she needed to get to the Colorado Springs Airport -- it was snowing and there was already a foot of snow on the ground.  But she really needed to get back to her kids and to work, so we packed the car up (and we took food, water, blankets, flashlight, etc., just in case) and we headed out.  It was a very scary ride off the mountain, low visibility, and lots of snow.  But we made it.  And by noon the sun came out and the snow started melting, so our ride back home was much better.
Saying goodbye to Tanya was emotional.  Marshall really enjoyed having her here, he really needed that.  We got home around 5:00 and we were both exhausted, so it will be an early night.

We stopped at the Post Office on our way in and had three Red Green DVDs from Karen.  Red Green is a hoot.  So we have more laughter coming our way.  Laughter is definitely the best medicine.  We really appreciate the DVDs and the laughter and forgetfulness they bring.  And my grade school and high school friend, Donna, made a motivational tape and sent lots of great ideas for dealing with all of this.

We are still waiting for the biopsy results.

Kissing Daddy....

Heading to airport

Went to the mall....

Another good day. Marshall took Tanya and me to breakfast and then he ran a few errands and Tanya and I went to the Pueblo Mall. We spent the afternoon at the mall, had a late lunch and then we were home by 5:00. Marshall reported that he felt pretty good all day. Good news. Tanya leaves tomorrow and they are predicting a possible two feet of snow tonight! So the drive to Colorado Springs tomorrow should be interesting. I hope Marshall feels like making the trip!

A nice outing

Tanya and I got Marshall to go to breakfast today and we enjoyed it.  Then he still had some energy so we went to visit a neighbor's newborn baby goats -- fourteen of them!  We had a great visit, but Marshall got tired out so we came home and settled down for the rest of the day. He had a lot of bone pain today and we kind of thought that was going to die down.  It's hard to be patient. And he hates to keep taking Oxycodone.  But after a nap, we are looking forward to Lou Malnatti's pizza for dinner and some nice movies to watch!