Late September 2013

Most of the visits to this blog are to track my health and see what I have been up to.  Well health wise I have been fairly stable.  I do get outside for a little exercise and to move around some.  So as I am, writing this blog I asked myself; can I still do a push up?  Well I found I can do two “girl pushups” (knees on the ground) and not the twenty I remember doing a few years back.  Well I knew it would not be twenty, but I was shocked that it was only two.  Plus I got light headed from the ordeal.  Wow.   Well okay.  It has been a few years since I was 45.  I am not running or going to the gym and my six pack left me a long time ago.  Plans to climb Mount Rainier were never asking if we were physically ready but what food do we want to bring.  So… I lose track sometimes of where I am today.  I think I can ride my motorcycle or get on a ladder or hike into a lake.  It is like the guy who has had a leg amputated.  In his head, he can still roll his toes and take a step with his phantom limb.  Yet for me reality shows up and tells me to hold on to the walker and it helps to walk if the ground is flat.  This month there have been no changes in my health status. 

The biggest news this month for me is that I am painting a lot more now.  I just hope I am getting better.   I am posting a few of my paintings here. 

There was an interesting investor article on drug companies developing drugs to help cure various forms of Amyloidosis.  I am posting a link here should you follow this blog to find out more about AL Amyloidosis.  The article does mention a little about this rare disease that I have, but the emphasis is on investments as some of these companies are developing ways to manage and cure the disease.  It may be too late for me to take advantage of these new developments.  Though I cannot lose sight of all the developments I have been able to benefit from. 

August 2013

 





This past month I have ventured out a bit further from home to take advantage of each day that I have been given.  I mentioned to my friend Jerry that I would like him visit a few historical places in Montana for me after I am gone.  He took that as a challenge to get me off my rear and out to see those places first hand.  I had never been to Montana and there were some points visited by the explorers Lewis and Clark that caught my attention.  Several years ago, I read Steven Ambrose’s book “Undaunted Courage” a story about the Lewis and Clark expedition of 1803 - 1806 across the newly acquired Louisiana Purchase and to find a trade route across North America.  The book remains one of my favorites.  So on August 1, after getting clearance from my Hospice Team, we left Washington for Montana for a five day road trip.  One place I wanted to see was a spot William Clark had carved his name in a sandstone formation and was still visible today.  The location was called Pompey’s Pillar by the members of the expedition.  “Pomp” was the nick name given to Sacagawea’s infant son Jean Baptiste Charbonneau.  Pompey’s Pillar is a one acre sandstone formation that stands 150 feet above the Yellowstone River.  Today it is located just outside of Billings, Montana.  As we arrived at the location, we learned from the park ranger that the entire exhibit was wheelchair accessible with the exception of sandstone carving of William Clark’s name, which required going up a 100 step stairway.  My friend Jerry, who I have climbed mountains and run marathons with wanted to carry me on his back up the stairs.  So being the good friend that I am gave him some physical cross training in preparation for his next marathon.  I have been losing some weight, but I am still 150 pounds.  He carried me to the top of the stairs so I could see this name carved in the sandstone with the date of July 25, 1806.  I was able to scratch one more thing off of my “bucket list.”  Other places we saw on this five day excursion were the Little Bighorn where General George Custer died and Yellowstone National Park.   

 

 

 

There have been no noticeable changes in my physical strength or health this month.  I will continue my classified as a Hospice Patient per the recommendation of my oncologist.   

 

 

July 2013

Part of the symptoms of AL Amyloidosis is light headedness and weakness of muscles.  This month I have mastered getting into my home safely.  Our home has one set of stairs that brings you to a single level with our rambler style house.  Once inside I am fine.  I move up the stairs safely by sitting down on each step and lift up backwards one step at a time.  This activity does not exhaust me and I am completely safe from a fall since I am already sitting.  It sounds strange but this is how I can enjoy going home for a few hours in the evening or on the weekends.  

I attended a fun run/walk open to employees and their families from Chelan, Douglas and Grant Public Utility Districts.  I had an opportunity to see many of my colleagues from my office as I had worked with Douglas PUD for close to 20 years.  Rose had her two daughters, seven grand kids and her mom all participate in either the mile walk or the 5k run.  We received a nice T-shirt for being a participant and several family members won trophies for their age bracket and gender for the race.  The trophies were made from a short piece of high voltage wire.  Very clever.  Another outing we made was to attend the Bach Festival at Lake Chelan.  What a treat to hear a Brandenburg Concerto (No. 3), Mendelsohn’s Violin Concerto in E Minor and Vivaldi’s Gloria.  The evening was very warm.  Many in the audience came in casual attire with shorts and sandals.  The music was not casual as the orchestra and choir made a great performance with skill and feeling. 

My health has been about the same as last month.  I have lost a few more pounds.  I am getting too skinny and weigh about what I did as a freshman in high school.  My attempt to eat more at meals and snack between meals has not been that successful to gain weight.  Another common symptom of AL Amyloidosis is the disruption of the gastro-Intestinal system.  I do fine eating sea food and poultry but I struggle with beef, most dairy products and chocolate. 

 

 

June 2013

This month I spent a lot of time painting.  I have completed a dozen or so small paintings.  Paintings from photos I took in my climbing days and some from photos off the Internet.  I have learned a few things of how the water and paint act. In the photo I am painting at a local park near the Columbia River.  I have a traveling palette or paint set I have taken on camping trips and use water right from the stream I was painting.  There is a difference in how the paints of my two palettes are used.  Paints with the traveling palette are in small cubes that move freely with water and a brush.  The larger palette has colors that are squeezed from tubes into wells and then after drying are worked with a wet brush to move the pigment to the paper.  Though the traveling set has a third of the paint wells, I like the challenge of mixing to get the right colors.  In theory, I only need three wells for the primary colors, red, blue and yellow.  From there I should get any color I want.  Well it sounds good.  The abundance of color and shades of greens and browns in the larger palette helps a lot.  And oh yes, the traveling palette has one brush that is less than four inches long from end to tip of brush hairs.  I enjoy the simplicity of the travel set. 

This was a good month as I continue to see improvements with strength in my legs.  I am using my walker more and can see my balance is improving.   I have been monitoring my heart rate and oxygen saturation to see what some exercise was doing to my circulatory system.  A small amount of walking will elevate my heart rate and my oxygen saturation will drop some slightly.  I saw my oncologist this month for check up of a possible respiratory infection.  The lungs were in good condition with no sounds of a pneumonia.  We were surprised when my blood pressures did not drop between laying, sitting and standing.  Generally my blood pressure would drop over 20mm of pressure when I would stand.  But this time they dropped only 10mm of pressure, a very healthy number.  Then the blood worked up showed good values also.  This after I have been pulled back on some of the vitamin and mineral supplements.  We were all pleasantly surprised.   

My daughter-in-law told me she was not surprised I was getting better as there are a lot of people who are praying for me.  Thank you for your prayers.    

 

 

Working on my attitude

Since the 2002 Winter Olympics I have been a fan of Seattle speed Skater, Apolo Ohno.  With the 2008 Olympic Games he became the top US Winter Olympian with eight metals of which two were gold.  Being in three Olympic Games, a span of twelve years, is an accomplishment in itself for an athlete.  But beyond his ability as a speed skater, I like the guy for his personal philosophy of life.  The coffee chain Starbucks used a quotation from Apolo to place on the side of their coffee cups a few years back.  “If I have given my all and still do not win, I have not lost. Others remember the winning and losing.  I remember the journey.”  Several years back I was a long distance runner.  The weekends were usually set up for a long run, at least eight miles and more like 14 to 18 miles when I was in the peak of my training.  I looked forward to every run and the visit with whoever I was running with.  When time was short I would get in a four miler and then get ready for work.  I would log my time; keep records of my total mileage for the year, etc.  For me the journey and the analysis of my running for training schedules and looking at how my pace was improving were more enjoyable than the race.  For all the races I was in, there were few that I came in first for my age division.  One race I tied for first with my good friend Jerry.  One half Marathon I tripped my good friend Joe as our feet got tangled up on a curve.  There was no one else close to us to crowd me into him.  So how did it happen that I tripped him all by myself?  I am not sure.  It may have been that for that race I got the start time wrong and we were 40 minutes late and we were trying to passed up some people that were way ahead of us.  The journey of my running had many memorable events.   

Today my five year journey through AL Amyloidosis has also accumulated a lot of memories.  They include the fine doctors and nurses that have worked with me.  Also the friends that were being treated for cancer or other diseases.  And the times of recovery, either from the medications or the healing from the various surgeries from heart transplant to minor procedures such as a bronchoscopy.  They all become part of the experience; the journey.  A lot of it was not fun. 

 I am going to close my discussion about the journey with one more quote.  “Life consists on not playing good cards, but playing those you hold well “Josh Billings.  I had no way of selecting the cards that were dealt me, but I can decide how to play those ugly cards to the best of my ability.  My attitude about life has yet to be changed from the Amyloid protein.  I have the ability to still do some good for those around me and help in some way those I love.  That is the focus I have with every day I am given.  The journey has become my focus.   

For the past month I have been working on small improvements to my overall health.  I have moved from continuous oxygen to supplemental oxygen at night.  I have been able to get up and walk with my walker for short distances.  I remain on hospice due to the condition of my vascular system that has been damaged from the deposition of the Amyloid proteins.