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.

 

 

 

My Wellbeing

  I just came home from my doctor appointment at the Seattle Cancer Care Alliance.  I have been in remission for quite some time from cancer, however, I am followed up for tumors in my right breast.  So far they are benign. My wellbeing is dependent upon consistently having checkups.  That story changed after I took a direct to consumer DNA test.  My life became a bit complicated…Maybe you will relate.  Come along for a story friends…..

Random Acts Of Kindness

Something cool happened to me yesterday. Keep reading for the awesomeness vibes you are about to uncover here! 

Imagine a world without hurt. Everytime I turn around lately,  the world’s a bit more cold, distant, aloof. The pain is palpable.   

I am full of life and know this feeling comes from deep within. It is a blessing from God. I know when I crash, however, it can be as if my breath is taken away from me. 

Last night I attended Neil Diamond’s 50th anniversary concert here in Seattle. I loved every minute.  After the concert, my friends and I stuck around the venue late walking around. A medic working with the musicians came up to us and asked me specifically if I was a big fan.  I said yes. Before I knew it he handed me the oxygen mask Neil Diamond utilized right before he came back onstage to give his encore.   

Random, don’t ya think? It was very sweet of him. It was a breath of fresh air figuratively for me and physically for our star. I wonder what I should do with it. I need your ideas!!!!  I am one happy girl right now.          

The Hurt

Building on last week’s post, Outsmarting Getting Old, I wanted to thank you for your expressions of concerns and sharing with me your own struggles.  All paths can bring healing.  It is finding the one that works well for our own needs.

Today this little vehicle popped up next to me to my surprise!  What if I would have not seen that thingie and hit it while I was driving. Oh my the hurt, right.

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.

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.

I Did It My Way

Photo taken of the Cascade Mountains reveals the majesty of our world around us.

I am not into reblogging, but this one from a peer of mine who is speaking from her experiences with the dying just about choked me up beyond words. She interviewed the dying and asked what regrets they had in their lives. As a cancer survivor on more than one occasion, I truly get this list. Most with good health will not, but you do have a chance to. Review this now and see what you can do to change your ways:
http://www.alternet.org/5-top-regrets-people-have-end-their-lives

10 Tips On Giving Advice

This is yor friendly blogger holding up a SEAHAWK FLAG I had signatured by the players several years ago when the IRAQ WAR first broke out. We sent it to the troops we were sponsoring to encourage them. Helping others is always important!

When you are qualified to give advice is it prudent to do this outside of your work time? Today was a perfect example of someone asking me for help. As a retired Registered Nurse I have been asked numerous times from family members, neighbors, friends, or just someone in a store that saw me in a nursing uniform for instructions on a certain medical subject. The questions asked of me have been simple to really quite complicated.
This morning a friend called me after accidently sticking herself in the thumb with an epipen. An epipen is an emergency treatment injection for life threatening allergic conditions a person may be having. This medicine actually belonged to her husband for his medical problems. This particular drug if given is administered in the thigh not the thumb where she accidently gave it to herself. I offered her advice rather quickly because of the type of situation she was in, but the problem is that she lives close to 3000 miles away from me! You can feel flattered someone trusts you enough to call you, however, was it prudent to give advice to her? My answer to the question is quite simple- IT DEPENDS!
Here are my top 10 advise giving tips. This is in no particular order and it does not mean this is the only advice out there. Many folks know alot more about almost everything than I do, but after this incident, it occurred to me that giving advice is not what it is all cracked up to be. So again my disclaimer is that this is just some helpful advice on giving advice and not necessarily for only medical types as myself:
1. Be very sincere. It may have taken alot for someone to approach you. AKA-do not roll your eyes….like you are being bothered.
2. Make sure that you understand from them that they are indeed asking for your advice. Clarify with the person especially in nonemergency situations.
3. Do not get judgmental at all. No one needs a lecture. If you can offer a book on the subject then do that or a link from the internet.
4. Allow the person to explain their situation clearly if they can and what exactly their question is.
5. Make it clear that your “advice” is not the only answer especially if there are many different approaches to the question that is being asked of you.
6. Be kind to the person. Do not make fun of someone for asking your opinion.
7. Make sure the person understands your advice and that you ask them to explore in their mind if what you are saying coincides with what they are thinking.
8. Do not act like you are 100% correct unless you know you are 100% correct.
9. Remember most times folks know what is best to do in their situation and they just need you as a friend to confirm their suspicions for their circumstances.
10.Before you end your time with that person, make sure they have a plan of action in their mind.

I am sure many of you are wondering what happened to my friend that stuck herself with the epipen needle. Since I knew she was speaking easily, I made sure she was breathing all right and asked her how long ago she had done this to herself. I said she needed to go have her husband take her to urgent care for assistance especially since she was experiencing some increased heart rate and my friend does have high blood pressure and a history of breathing problems at times. I also mentioned that she should get a tetanus shot. Sticking yourself with a needle or any kind of cut means it is time to update your immunization if need be. My primary concern is to do no harm so encouraging her to seek medical attention was paramount in my mind.

Redefining Mental Illness

When I was growing up, mental illness was shunned.  We did not talk about it in my household.  The first time I really heard much about mentally ill people was from my two aunts. They were nurses in a mental hospital for chronic patients in Kentucky.  As a young girl of 16, I was immediately drawn into the strangeness of this new world.  I went up to visit my aunts when they were working and I was able to actually walk the halls with the patients.  I was not scared, but what impressed me most about these sick folks was how they mostly kept to themselves. They talked to themselves and did not seem to notice the world around them.  One man did come up to me saying some jibberish that had to do with eatting Ronald Reagan’s liver for lunch and I said, “I hope it tasted good.”  I did not know what to say and as many of you know I do have a strange sense of humor.

When I became a Registered Nurse, I left the crazy world my aunts loved to concentrate most of my nursing in critical care or post operative surgery.  I thought this kind of nursing was a much safer world for me.  I guess I was fooled. However, the world of Mental Health never left my personal life.  In 1993, I welcomed  a beautiful baby boy named Luke.  He would be diagnosed with PDD-NOS or Pervasive developmental disorder not otherwise specified.  Later this was just noted as Autism.  My world as I knew it was shaken to its core.

You see a panel of experts in 1994 had completed a new revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) that would be used by the medical community to identify and diagnose children like mine with Autism.  They say 20% of the population has some form of mental illness.  I think it is higher, but what do I know.

This year a revised version of the DSM ( ONLY fifth revision since its creation in 1952) came out. Many folks in the medical community are up in arms about it.  Change is not easy.   My concern is more that we do not let the new DSM take away the much needed health care  for individuals who need it to function in everyday life.  Globally this book will be used to diagnose, but in America this book is hugely significant to the ordinary person because if a person is not diagnosed, one does not get the dollars from their health insurance.  This concerns me.  I think time will tell how all this plays out especially with Obamacare taking root in the next year or so. In general I applaud the mental health community for updating the book.  It needed to be done.

I also want to mention that I fear for the over diagnosing of individuals with mental illness.  A word of advice:  Do not take a pill for every whim and especially do not put a child on a pill to mask symptoms until you really understand what is going on.  Patience is needed .  Do not be in a rush.  Where the heck you going anyway?  It has taken many years of finding the right medication for Luke.  He is on two main meds right now and is functioning fairly well on them.  He is monitored very closely by doctors we have found in our community we trust in Seattle.

Luke and Linus enjoying some much needed rest time.