Health Update 10/4

It has been awhile since I have posted a health update and there has been lots going.  I had hoped to do a recap of summer fun first.  We'll still recap the summer because we have much to celebrate, but first an update from the Mayo Clinic.

My PSA continues to climb with a doubling rate of monthly. This month the PSA went from 108 to 227.  We had been running out of options for treatment.  Then God blessed us and brought a little gift our way in the form of a stage 3 clinical trial for a new drug looking for FDA approval.

The company producing this drug has a link that does a great job explaining how this drug works.  Over the link below, hold the "Crtl" key down, then click on the link below if you would like to learn more about the drug/trial:

LU-PSMA-617

There were forty positions available for the portion of trial through which Mayo is involved. I made the cut!  😅  My first injection was Wednesday.  The injection has brought no side effects so far other than what has been expected.  (Nausea, constipation, diareha, feeling of tiredness, and some impact on the savory glands.)

Besides the PSA climbing, I have been dealing with pain caused by the cancer in my bones.  I have cancer spots running from my skull to my femors.  My worst pain has been in the lower back and left thigh, and I have a crack in the left #9 rib.  This past week I signed up to work with the local home health group at CHI here in Little Falls along with my local doctor to try and get some relief.  Great people.  With the stronger medsI forgot that I can't drive from doctors appointments that I have and Mary was in a meeting at work.  The nurses got me home.

Besides the PSA climbing, I have been dealing with pain caused by the cancer in my bones.  I have cancer spots running from my skull to my femors.  My worst pain has been in the lower back and left thigh, and I have a crack in the left #9 rib.  This  past week I signed up to have local home health health care to work with me on the pain in conjunction with my family doctor. Great people.  With the stronger meds I cannot drive by myself.  When I was at the doctor's office on Friday, I forgot to arriange for driving so my doctor had his nurses take me home.  I am so blessed!  We did increase the strenght of the med to and will continue to do so/  Want to get things to the point that I have a normal life to live.  I am not dead yet, the fight goes on.

I am not the only person with medical struggles these days.  My sister has been officially diagnosed with PLS.  Not the same as ALS (Lou Gerhigs Diesease), nonetheless there is going to be some life changes for both of us.  With God's love, we still have some great times ahead of us!

Bob Health Update 5/5/18

I recently heard a band perform a song entitled "Put It In God's Hands".  Seemed like timely advise as a lot is happening these days.

Since my last update, I have continued to have challenges with my digestive system and pain in my left thigh and lower back.  The pain in my left thigh has been extremely painful at times, especially at night when I have had episodes that have forced me to crawl to the bathroom because it hurt too much to stand.  Still, I managed to work through the challenges and was able to enjoy most of March touring the southeast United States.  Once I was home again, I decided to seek help again.  So far the digestive challenges remain; the good news is that I have lost thirteen pounds.  The bad news is that this week I have once again had trouble with digestion, had dry heaves, vomited bile, and run a low grade temp in the evenings.  Then I get days like yesterday when I felt almost normal.  For the leg/back, an MRI showed that I had a compression fracture in the L4 lumber in my spine, caused by the cancer there.  An appointment was set up for me to visit a neurosurgeon in St. Cloud to see if anything could be done to stabilize the area and reduce the pain.  But before visiting the neurosurgeon, it was time to visit Mayo for my quarterly checkup.

The first piece of news at Mayo was not good.  My PSA jumped from 2.0 in January to 16.6.  That tells us that for this time period the velocity of the cancer growth was that it was doubling in size in about a month's time.  (2.0, 4.0, 8.0, 16.0)  Now you can better understand why it has been so important to attack the cancer when the PSA is a small number:  when the cancer starts growing and the PSA starts doubling, it can become a big number in a short period of time.  If this rate of doubling continues, we'll be into some big numbers by fall.  Pretty scary thought - a worse case scenario in my mind.

The next piece of news was unexpected good news.  We are pretty much out of traditional treatment options.  (Trying other chemo drugs is another possibility but that gets into some very concerning quality of life considerations after my first chemo treatment did not go well.)  The goods news is it just so happened that Dr. Kwon had learned of a new prostate cancer drug and related clinical study that very week.  And I am a top candidate to qualify for the study.  The drug is Lutetium 177 and is used when other treatments have failed.  The drug is administered every two months through an infusion with a total of four infusions (so an eight month period).  The trials done so far have yielded very good results.  So the plan is to have me receive additional scans and blood work so that I am qualified whenever this study opens up, which was expected sometime in the next 4-6 weeks.  The study is only accepting 800 participants so Dr. Kwon wants everything in order for me to get the best shot at getting in.  So I will be back in Rochester on June 1-4 for these scans and consult.

During this visit, we also saw the latest scans showing where the cancer spots are growing.  By my count there is approximately fourteen spots in the shoulders, arm, ribs, spine, hip, and thighs.  On the good news front, my liver numbers are back to normal.  I can once again have an occasional adult beverage, assuming my stomach is up to it.

On Friday we met with Lindsey Dingman (PA) and Dr. Gerdes in St. Cloud about my back.  Turns out that the compression fracture was already visible on the CT scan done in January.  Comparing this to the MRI showed that things seemed stable and some healing has probably taken place.  Zooming in on the MRI we could see that the nerve in L4 was being pinched, probably causing my leg pain.  As a result, the plan is to do a quick surgery (45-60 minutes through a one inch incision) to "roto rooter" bone from around the nerve to relieve the pain.  The feeling is that things will be stable enough that after 4-6 weeks of limited activity, not only would I feel better but I can potentially even ride bike again.  (I'm walking with a cane these days so that was music to my ears.  No bike riding in my current state.)  So the process of getting insurance approval and on Dr. Gerdes' schedule has begun.

We knew that eventually the cancer would advance, just a little surprised at how quickly things have been moving lately.  Hopefully we can slow it down a bit, but there are no guarantees on that at this time, just hope.  At times it is all tough to deal with.  The tears flow and anxiety attacks get you worrying about what is coming.  When you consider when I first started having symptoms, we have now been dealing with cancer for a dozen years.  My body is feeling all of those years of treatments.  Yet there are also times when I am surprised at how well Mary and I have held up emotionally/spiritually.  I hope our faith in God is truly that strong moving forward.  Fortunately God has surrounded us with some very wonderful people that help us remember all of the positive that has been a part of this journey.  Just recently I received a beautiful prayer shawl from my sister-in-law Dana's niece as part of her 1st Communion experience.  This past Sunday, Fr. Joe came up to me after Mass and asked if I would like to receive Anointing of the Sick.  What a boost to have that experience once again surrounded by friends.  I have so many people asking how Mary and I are doing, and letting us know that they are praying for us.  That means so much.  Tough to get down for any length of time when you have so many people lifting you up.  And so much easier to "put it in God's hands".  He is answering prayers.  More "moments" await!

The Great SE Road Trip

After spending too much time on the couch all winter not feeling well, it was time to get out of the house, live life, and create some more "moments".  After considering a number of trip options, we settled on a driving trip to the southeastern U.S. and back.

Road Trip!!! - Southeastern United States

A three week trip with me driving solo with Mary joining me in Fort Myers on March 17 - 24 (some people have to work).  Visit family and friends and take in the sites along the way.  Turns out I only had to drive two days by myself as brother Doug flew into Minneapolis to drive with me to his place in Georgia, and brother Chip flew into Jackson, Mississippi to drive with me back home.  True "moments" are created by being with people and I was so blessed to spend so much time with family and friends on this trip.

Left Little Falls on Tuesday morning, March 6, to meet brother Doug at the airport, just as most of the snow from the storm the day before was ending.  Doug was true to his word and did not let a little snowstorm affect how he was going to dress.

Nice legs

That night we gathered with my sister Rene' and her family, brother Ken and son Nate, and Christy and Caleb for supper at Shamrock's in St. Paul.  (I'll confess now:  I did a really poor job of taking pictures of people on this trip.  Have to do a better job of keeping the camera out and looking for those photographic moments.)

Wednesday morning it was time for the journey to begin.  After a brief stop in Rochester to see Sue and Paul Anderson, we headed for Doug's home in Georgia and saw the following along the way:

Metropolis, IL

Can't go to Metropolis and not see Superman!

Superman's Gift Shop - Notice the old fashioned phone booth left just for Superman.

And there he goes!

Nashville, Tennessee

Stopped just long enough to do a little scouting for what I hope will be a future trip with Mary.  Checked out the area by the Country Music Hall of Fame.  Can't wait to explore this town!

Checking out all of the restaurant and live music choices.
There were pockets of live music even in the afternoon.

Does riding a Pedal Pub qualify as a bike ride?
Seems like the thing to do in Nashville.

U.S. Space and Rocket Center in Huntsville, AL

Always loved following the space programs and I had previously visited both the Johnson Space Center in Houston and the Kennedy Space Center in Florida, so couldn't pass this one up.  This is where all rockets for both the military and space program are designed.  They also hold camps for groups of young future astronauts.

The space shuttle Pathfinder greets you at the entrance to the center.  Never heard of the Pathfinder?  It was never meant to be launched, display only.

One of the exhibits was a partial mock up of the international space station.  For some reason, one of the biggest signs marking what things were was the sign for the bathroom.  Guess it can be a priority.  😊

Hitting the target is important in zero gravity.

Saturn 5 rocket used for going to the moon.

The command module for the Apollo missions. 
In such close quarters, the astronauts better like each other.

Chattanooga, Tennessee

Chattanooga was a key strategic location to winning the Civil War.  Numerous battles were fought in the fall of 1863 for control of the mountains and areas surrounding the city.  Eventually the Union Army was able to gain control, cutting off supply lines for the Confederate Army, and paving the way for the Union to advance in the South.

Lookout Mountain.  Great view of the city below.
Easy to see why this was a strategic area to control during the Civil War.

Chickamauga National Military Park

Statues and monuments marked the battlefield.  We learned more about
battle from the movie inside the visitor center than we did from the information
provided out in the field, unlike what you find when visiting Gettysburg.

The trip down to Georgia had also included plans to visit Jack Daniels or some other distillery and to visit Great Smoky Mountain National Park.  Brother Doug decided he didn't really need to visit a distillery and the main road through the park was closed due to snow and ice.  We managed to see some of the park and the weather while we were out on Doug's business route the following week.

Blue Ridge Parkway.

Great Smoky Mountains - snow on the tops with more on the way.

After ten days with brother Doug and his family, it was time to head for Fort Myers to meet Mary.  While waiting for Mary's flight to arrive and before they left town, I was able to spend time with friends Chris and Doug celebrating St. Patrick's Day.

A very happy Doug after he discovered that Bell's Hopslam was on tap.

During the time Mary and I spent together in Fort Myers we did the following:

Minnesota Twins Spring Training Games

We were able to attend two games and had a great time as we are both big baseball fans.

Tony Oliva

Joe Mauer

Time on the Beach

Because I was having challenges with my left leg and lower back, our time on the beach was much less than we originally planned.  We were unable to enjoy Sanibel Island as we spent our time in traffic or trying to find a parking spot that never materialized.  But we did get to spend some time having supper at Fort Myers Beach and watching the sunset.

Everglades National Park and Big Cypress National Preserve

Best day of the trip!  We took a boat ride in the Everglades.  Our captain then mentioned that if we were willing to drive eighteen miles, there was a gravel road that would allow us to see lots of wildlife without leaving our car.  That was Big Cypress Natural Preserve and it was definitely worth the drive. Lots of birds, turtles, and especially alligators, all in their native habitat.

A dolphin popped up to greet us.  A great "Flipper" moment!

Manatee Park and Six Mile Cypress Slough

Closer to Fort Myers we were able to take in some wildlife as well.

Can't come to Florida this time of year and not find a way to see these gentle creatures.

We were also able to spend a couple of hours visiting with cousins Sue and Duane Paulson and Sue's dad Lloyd.  An unexpected but very wonderful visit.

After dropping Mary off at the airport in Fort Myers, it was time to visit friend Tami in Panama City.  Two days of quality time running around PC as the final preparations are made on oldest daughter Lindsey and her fiance' Nathan's wedding.

Sunrise on the bayou behind the Graham house.

Friends!

The final leg of the road trip involved meeting brother Chip at the airport in Jackson, MS to ride home with me.  We stopped to see the Clinton Presidential Library in Little Rock, AR.

Besides replicas from the White House, there were many displays detailing Bill Clinton's political life.  I consider myself independent; I don't like either political party at this point.  One of the reasons became clear during this tour:  we haven't found a way to balance the budget and pay down some of our debt in over twenty years.  Baffles me why we can't get that done.

We stopped at Chip's home in Olathe, KS.  Besides visiting with the family (Melissa, Aidan, Finlay, and Kannon), we took in the National World War I Museum.  One of the best museums I have ever visited; we were there 3.5 hours and could have stayed longer.

Returned home in time to attend Good Friday services and see ten inches of snow fall over night.  It was a great trip; as always it is good to be home again, despite the snow.

I've shown many pictures of the places visited during the 3.5 week trip; it's a lot to document in one posting.  The best moments from the trip came from the time I was able to spend with my two brothers, Doug and Chip.  They and their families made sacrifices so that we could have that quality time together.  I can't say thank you enough!!!

"Life is not measures by the number of breaths we take but by the number of moments that take our breath away"  Keep looking for the moments in your life!

Bob Update 1/6/18

Love this picture that my brother Doug took of me back in the early days of this journey.  I think it still applies.

Mary and I were back at Mayo Clinic this week for imaging, consult, and treatment.  Cancer has shrunk slightly since the end of September based on imaging and my PSA dropping from 2.6 to 2.0.  This is a really good reaction to the Xofigo (Radium 223) treatments.  These treatments seek out cancer spots on my bones and release radiation that targets the cancer while leaving surrounding tissue mostly unaffected.  Radiation doesn’t kill cancer immediately; it changes cell DNA so that when the cancer cells try to reproduce, they can’t.  As a result of this time lag, the halfway point of treatment doesn’t always show positive results with this treatment.  So everyone is very pleased with these results.  Had my fourth treatment/infusion on Wednesday; the final two treatments will take place later this month and at the end of February (4 week intervals).

On the flip side, since early October it seems like I am dealing with one health challenge after another.  I won’t go through the entire list, we’ll just say I have spent way too much time in doctor’s offices, ER, and on the couch.  We did end use of one of my cancer treatments, Zytiga and Prednisone.  I developed bone and muscle problems in my lower back, hips and legs that were making standing and walking an adventure; had trouble depending on my legs to support me.  We had already cut down dosage and I was feeling better when FDA came out with a recommendation to not pair Zytiga/Prednisone with Radium 223 treatments due to risk of bones breaking and other concerns.  Zytiga/Prednisone has now been discontinued.  We are currently trying to figure out why my liver numbers are up, why I am vomiting almost daily in the morning, running low grade temps off and on (no flu currently, I have been tested for bugs), body aches, and numbness in my shins/calf muscles, among other things.  Mayo did an MRI of my liver and stomach this week; found nothing to account for the high liver numbers.  I see my family doctor on Monday and hopefully we can come up with a game plan.  Part of the challenge is that all of the many treatments that I have had are starting to have an accumulative effect; the body can only take so much radiation, chemo, drugs, surgeries, etc.

Because my immune system is not at full strength as a result of treatments, I had to end my volunteering at the local hospital, at least temporarily.  It was a tough phone call; I really enjoy the volunteering but the risk to catch bugs is too great at this point.

Hopefully we can get me feeling better so that I can enjoy some of the benefits of the Radium 223 treatments.  Our goal with any treatment at this point is quality of life.  That doesn’t mean we are giving up.  We’ll do what we can to fight the cancer.  But we don’t want to do it at the expense of being able to live life because the side effects are worse than the treatment benefits.  Obviously much effort is currently going into finding that balance.  The treatment goal is also a result of the fact that we know of no curative treatments available at this time.  Frankly we don’t even know what other treatments might still be available after Radium 223 treatments are completed.  We are okay with this as we continue to have faith in God’s plan and His love for us.  Make no mistake, some days it is easier to stay positive than others and the past few months have created their moments of tears.  We are human after all.  Still, God’s love sustains us and look forward to someday being in His loving embrace in heaven.  Just not quite yet.  J  We keep praying for some more time to enjoy on earth the people and beauty He has surrounded us with.  He certainly has surrounded Mary and I with the best!

With all of this in mind, I am hoping to use most of March to take a driving trip to the southeast part of the country to visit family and friends and take in the sites along the way.  The little boy in me wants to come out and play some more.  J 

“Life is not measured by the number of breaths we take but by the moments that take our breath away.”  Continue to appreciate those "moments"!

Christy and Caleb's Wedding - A Few More Pics

So many "moments" from this special day that I had to share more.  These pics are just a small sampling of the pictures that we received from Mariah Wilder Photography. Enjoy!

Maple Island provided a perfect backdrop for pictures.

Back at St. Mary's Church

Reception, dinner, and dance at the Falls Ballroom.

Continue to look for the moments in your life to celebrate!