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.

 

 

 

Finding Joy: Autism and COVID

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.

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’ .”

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.

Alesia 2020

 

Luke And Alesia

My friend from Kitsap texted me last night inquiring about my New Year festivity’s. I texted her back a photo exactly what I was doing at 8pm. I was standing in line at McDonald’s! Such excitement with my autistic son Luke, but when I look into his eyes I know exactly this moment here is where I belong.

Outsmarting Getting Old

Lately I have been experiencing a bad round of chronic pain that is not well controlled with my regular medications. It is frustrating to live with this. I have been to more doctors lately, but I leave their offices more depressed. Doctors give too many pills as the answer.

I have a goal with all my physical issues and it is to maintain my happiness despite my pain.  One other important aspect for me is to continually look  for current modalities in overcoming my discomfort.  The other option is finding a distraction  to get through the ongoing pain. Perhaps a distraction is being with your partner enjoying each other. This distraction can come from friends too.

The development in some circles in medicine is to ID more precise medicine treatments. This can be done by studying one’s individual genetics. This tool is the future. What do some of you think? I believe potential breakthroughs are around the corner.   Now that puts a smile on my face.

Smelling The Roses For Her

“This is heavy…” He was right.  

“Yeah.”  The flowers helped me concentrate on something else. Her death was heavy.  His perspective was ..”death is final. That’s it.”  I didn’t see it that way.   

The curtains to the “other” side was torn down for her.  Windows were opened when she took her last breath. My view is my friend’s death was a setting free. Not an end, but a new beginning. 

There is no forgetting her. Family will not. Nor will friends. Nature will keep her alive in my mind.  My concentration is on God’s natural beauty while I remember. Released from the earthly pain, I catch my breath.

Today is all I have and will make it count.  Ready for a day for God to show me the sun as I walk and smell the roses for her. 
 

The Honesty Factor

There will never be just one way to explain any given topic. If that were so, we would all be robots.  The honesty factor can be in different colors, yet with the same truth. 

Last week all hell broke loose with an issue dear to my heart. I am unable to discuss it fully on my blog. You know it is big when I can not even come up with the words. 

How many times have you had a metaphor utilized by someone to translate what they are trying to communicate?  Ministers love them in their sermons to help us achieve to that “higher” level.  Even physicians pitch them to translate science. 

How many of us have heard evidence based lingo?  We all value the meaning behind what facts are known on any given subject. The question is do we need those  facts thrown at us without some thought? 

Transfer of information always brings to mind a childhood game of whispering in one friend’s ear and then another, etc until all have heard.  What comes out at the end is always a good laugh. 

What if the transfer of understanding  goes amok? Communication 101 in college  after all is more important than even I thought.  

I am always full of questions . I wonder. I think.  I wait .  I need some answers. Maybe you do too. I hear ya.  Is a miracle around the corner? I hope. 

Collision Course

Convinced it’s finished, we find excuses. Lots of them. It is never done.  Conflict comes and goes.  We can be on a crash course that promises to be the collision of a lifetime.  No one said life is fair.

Stupid Blog Writing

I am driven to write. There is no exception even when unhappy with my words. I can not compare myself to those that have editors or proofreader’s to read their work before it is published.  I even hate freshly pressed endorsed by this platform.

Why do I write these days?  I received that lone comment that gives me pause.  Hearing from a woman dealing with two rare brain tumors brought tears to my eyes.  She seems to have a strong will and a determination in her spirit. If you are reading this, I am glad you decided to follow me.

Ceiling Prayers

Many times I have felt like my prayers only reached the ceiling. Can you relate?

As I entered a hotel in Las Vegas,  the most beautiful glass ceiling mesmerized my conscious. I wondered again about God and my earnest prayers only going so far.

Living In A Bubble



A man chooses to walk out in a dangerous area of the North shore of Oahu.

I live in a bubble at times.  We all do.  It’s human nature.  Reflecting about my time in Hawaii makes me feel free in my spirit and safe. I love tropical climates. I am sure the fact I lived here for several years attributes to these feelings. In the above photo, I enjoyed viewing this man who seemed to feel free getting close to the waves. Water is peaceful even when we know it’s dangerous…

Stumbling along in this life is not what we were intended to do.  We have purpose.  When given the opportunity ,  I can feel music in my body and dance the night away. 

I have done that . Those nights of dancing  can be so much fun. I am in control and enjoy myself in the rhythm. Music can control the mind. I wonder how much fun this surfer was experiencing on his longboard as he allowed the waves to control him as he surfed the direction the ocean was taking him. 

Our mental state can take over our physical state.  For example, if we hurt ( brain talking to us) we may take a pill to help this brain state.  My chronic pain was so much better in the warm climate . 

Enjoying Hawaii is always a spiritual uplifting experience for me. Hawaii is a benchmark for me getting in touch with my spiritual self.

It’s amazing to me when folks argue that their conscious can not accept faith or theology. The idea of science enters the picture and is integral to mankind , but it can not explain my conscious state nor yours. It just can not know the subjective.

We human persons are more than the sum of our parts.  We have spirits that have the ability to think , feel, and can make conscious decisions. Respecting each other’s  life decisions may mean we need to climb out of our bubble once in awhile.  I know I do. Do you?  Living in pain chronically makes me think on spiritual ideals as this post conveys.  So much crisis and turmoil fill up our world these days. Sometimes removing our bubble can bring clarity.  

Credit: google and the others pictures were taken solely by Alesiablogs