Category Archives: Uncategorized

Cancer

Recently at my last appointment at the VA , I met this amazing character actor Arlen Dean Snyder from the film Heartbreak Ridge. Photo courtesy of IMDb.

The Today Show has one of my favorite weatherman Al Roker who was recently diagnosed with prostate cancer. As a familiar face on television, he has actively decided to educate the public and bring awareness. Mr. Roker’s doctor opted to do a biopsy. The pathology report showed an aggressive prostate cancer and he will need surgery.

Last November in 2019, I reported to my family physician with the VA a worrisome spot on my face under my eye. Being suspicious, I looked up the best surgical dermatologist in Seattle. In documented emails discussing back and forth almost begging my doctor , I requested this specialist. The only thing she offered was a picture taken of my face. In December of 2019 that photo of my skin lesion was read to be benign.

Again, I asked to have it taken off and I was made to feel like I wanted a face lift. This was very disturbing to me so I made a decision to go to a civilian surgeon. Unfortunately because of COVID, my surgery was not until July, 2020 and by this time the suspicious mole had grown four times its size since December of 2019. The good news was the specimen was taken to pathology to be read and I went home to heal.

For two months into the second week of September, I slowly mended. Never hearing from my doctor, I thought I dodged a bullet.  Starting to receive my bills for this surgery I called the billing offices. I mentioned to the billing personnel never being notified of my pathology report. She stated staff would call. Soon my phone rang and the nurse gives me the shocking news. “I am sorry to say your path report was scanned into your chart and it was missed. You have cancer.”

Shockingly I responded, “You are kidding me, right. How could you guys do this?”

As I hung up my phone, the anger was setting in as I had to go back to square one with the VA and get the doctor I originally requested. It has taken the VA system another two months to get me into this specialist and finally on Monday I will have an extensive surgical procedure to clean out the cancer and work on getting clear margins with plastic surgery if needed.

As a highly energized advocate for myself, but falling through the cracks at every turn has become like PTSD. Their were a number of doctors involved in my cluster of poor care and a VA system that is slow and not conducive to timeliness. I am not writing this to blame anyone as that is apparent there is enough blame to go around. Rather this should be looked at as a system’s failure along with physician’s fatigue syndrome ( lack of a better term).

I do not know if this is a volume and processing issue in the VA system keeping up with the soldiers’ care, but this was important for me to share with you as it is something that we can and should do better.

Think of me next Monday as I have more surgery and thanks to Al Roker for being public. It has given me some courage to do the same about my cancer. The wounds I have carried throughout my life are deep, but it does not mean I should not share with my readers. I need you guys ever more praying and sending healing thoughts.

Meeting the actor Arlen Dean Snyder at the VA was a lot of fun. This is a really nice guy.

 

 

 

https://wp.me/p2rYD1-8S

https://wp.me/p2rYD1-8S

Revised version of a very popular post from my early days titled Pioneer Woman. If you love genealogy and stories about hard lives of women In the 1800’s in rural Kentucky, please read this true account of Jennie Jenkins the original pioneer woman in my family.

Finding Joy: Autism and COVID

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Luke gazing at me from his apartment window

As many of you know my son Luke is autistic.  When he was a kid,  he brought much joy as well as significant heartache in the midst of his diagnosis.  I desired Luke to have everything any other child would want, but I knew it would look different.  Luke did not know this and throughout his life he has shared an important intrinsic ideal that I always have looked to aspire to—-lots of joy!

Luke and I have experienced many extremes in our steps we have taken through his journey on earth. Everything that mattered to me has always been wrapped up in my sense of family and raising children in an atmosphere of love and acceptance.  It was not a surprise that the first time I spoke about COVID19 to Luke, he understood in the simplest of terms.  He knew life would have to change as we managed a new normal.  Luke likes to call COVID ‘the virus’ as he understands that term very well from having had bad colds in the past.

For safety, cautious steps were taken in Luke’s apartment with his care providers.   New rules were being put in place including social distancing and keeping me out of Luke’s apartment for the unforeseen future.  This sounds awful, but for all concerned it was paramount to abide by this rule.  His apartment is so small and sitting outside of his first floor bedroom window was not a dreadful place to be.  I know not everyone has this luxury to sit in a lawn chair by their loved one’s window so I count my blessings.

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Luke on video chat is fun although he may not say one word! 

As Luke is just about to turn 27, I began to realize almost half of my life’s memories  include his beautiful presence .  It is through those lens I am reminded of some of the fun habits in Luke’s life that may help others in coping with the stay at home orders that we still find ourselves in.  After all our wellbeing is so important.  Here is Luke’s list:

A.  Luke loves music.  We listen everyday to all genres.  Recently, we watched a Disney sing a long where Luke and I sang along proudly with Pocahontas on The Colors of the Wind.  This definitely puts a beat in our step and heart as I know it will do for you.

B.  Luke loves walking . He exercises in place very well.  He may be stuck in his home, but his feet are always moving.  Luke and I also walk trails around his neighborhood when we can.   Anyone that knows Luke knows you have to catch up with him!  I am reminded of the Bob Dylan song about keeping up —  The Times Are A-Changin’–

“Come mothers and fathers throughout the land and don’t criticize what you can’t understand. Your sons and your daughters are beyond your command.  Your old road is rapidly agin’.  Please get out of the new one if you can’t lend your hand.  For the times they are a-changin’ .”

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Luke and Dan on a recent visit to my backyard

C.  Luke loves to smile.  His face reminds me to do just that especially to our friends and family.  Make your time count with a smile.

D.  Take your vitamins.  Luke loves to remind his care provider’s to not forget his meds. He takes an excellent multivitamin and vitamin D.

E.   Luke loves to focus on routine.  If anything keeping a schedule is probably one of the most vital steps all of us should be making especially through this pandemic.

As these steps are thought about by you, know that Luke of all people is socially vulnerable.  Socially distancing is not new to him.  You are learning perhaps for the first time how it feels to be alone.  Remember Luke is almost 27.  He has been living a socially distanced existence way before anyone heard this term.  Not for a pandemic, but for him to adjust at times to life’s rapid pace when he needed to be removed from too much stimuli.

Last but not least, Luke and I video chat a lot.  It is important for us normal folks to gather and feed off each other positively as it is for those who are intellectually disabled.  I would encourage all of you to look for an outlet on a fun platform such as zoom.  Many of the kids ( including my 23 year old son) are playing on gaming platforms and doing their thing.  Lastly, Let us all not forget to do our thing with confidence.

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Alesia 2020

 

If I Died Tomorrow

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Monday would be a good day for gardening. The weather man convinced me of that. I bought plants at Costco Sunday evening and surprisingly it was a breeze shopping despite the COVID stock-up frenzy the past two weeks.  Driving  by earlier in the morning, a line went around the building with no end in sight. No one would believe what COVID has done.

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How Did We Get Here?

March 3, 2020:

“How did we get here?” My mind wandering in disbelief as two men cough near by.

“COVID I will not panic, but you got my attention.”  Then another person sneezes.

My name shows up on the computer screen indicating my meds are ready.  Going to the window the distressed lady shouts out to me,

“Look at the spit all over my window.  We have two Coronavirus patients in the ER and my family just called me and said don’t come home.”

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What is home anyway? Is it as safe as you think if you’re not invited any longer?

 

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Dream Escape To Berlin

There is no better dream escape to Berlin’s ideals and principles than its modern era architecture post the fallen wall that will treat the vacation traveler to a rich experience. Many old buildings were rebuilt after firms won contest bids.  One example is the revitalization of the Reichstag Building that took place between 1994-1999.  This architecture masterpiece was chosen and built for the country’s governmental move from Bonn to Berlin.

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Dome of the Reichstag is behind me and is a symbol of Democracy in Germany

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An Open Love Letter to Berlin

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Paul Klee’s The Lover is obviously in the abstract and darn if all I saw was The Pink Panther.

“Berlin, remember my time with you back in the summer of 87′, then again the fall of 89′, and yet one more time on my latest visit of 2019?”

Arriving autumn 2019 late in the morning after traveling almost 24 hours, the Tegel International Airport looked frumpish and out-dated. So naturally Tegel gave me no clues to the transformation I was about to realize in Berlin. Determined not to miss anything, my eyes foraged around as I studied the environment.  No doubt, I was anxious how to fit in.

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Someone Asked Me

Olympia, Washington

My friend Kara and I went to Olympia our state capital to meet with our senators and representatives. What a great experience.

Someone asked me, “What is your idea of a dream life?” Without restraint, I answered.

“It begins with trusting your gut to know when it is time to stand up and be a part of something bigger than yourself.  It is when you know you have met an ideal that finally satisfies you’re very being. It is digging deep in yourself and pulling out the silent parts.”

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Berlin And The Hollow Tooth

Tip three:  Discuss Holiday ideas with those who live in the area.  That’s my uncle! Consider Rick Steves guidebooks for additional information .  I like his books.

93B29B59-7139-4982-A428-A1BC9ED8122DSitting in my Uncle Peter’s small, but efficient flat in the Charlottenburg borough of Berlin,  we studied very old photos. He lived within minutes of the largest surviving royal palace in Berlin actually called Charlottenburg.  Sharing these pictures brought him happiness yet also caused him such consternation.  He recalled as a boy how he and my mom ran to the castle for protection when the city was being bombed by the Russians.  While hiding and playing on the grounds, he did not comprehend WWII.

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Berlin: Who Are You?

D9B4BAB5-024D-4FB5-8FC3-8BDC021C1BABThirty years ago Berlin’s wall came down.  I was working in Germany when that happened from 1989-1992.  After a nightshift at the military hospital, I went home to watch the news on the Armed Forces Network.  It seemed surreal to visualize the East Germans and many others excitedly chiseling the stone wall away!

On my recent trip to Berlin, it was with the wall in mind that I began another day exploring my mother’s hometown.   In my last post , I gave the tip to spend at least two days in the Mitte area.  Tip two is to look at Berlin through the eyes of history.

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