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.

 

 

 

Autism And Its Challenges

Luke’s autism is a story I have chronicled so you could see the challenges we face. This disorder comes with a big price and it takes much determination to succeed. Along with Luke’s disability, he has significant cognitive delay. His mental age in my opinion (his mom) is about four years old. The question by some may be, “How does one live like this?” The answer is, “It depends.” For example, many people have their own commentary of quality of life. We all have “our truths” about that subject. So do we impose our idea of quality of life on the one that is actually suffering, yet he does not even know it? My perspective is pretty simple. Life matters. No matter at what stage or age you are in. Life matters. Why are others quick to pull away from their responsibilities? See what you think of my example below as I describe a week in the life of a mom and her son trying to find medical help. Sorry medical professionals–you seem to get picked on by me a lot.
We have had quite a week dealing with Luke’s need for dental surgery. I spent undo precious time trying to find a doctor willing to do the surgery for Luke without giving him General Anesthesia. Finally I found an oral surgeon willing to take the chance to do the procedure in his surgical suite under IV sedation. I am very grateful that Luke was taken care of there and the surgery was a success ( no general needed!).
The post op journey has not been easy though, but I believe we may have made it through the worst of it. We make a third trip to the dental surgeon this week, and I hope that will be it except for routine cleanings! I think Luke would agree. I wonder how many people could go through the agony of hearing from one doctor’s office after another not willing to care for Luke.
I say Luke will endure and maybe Mom will too! I am glad sometimes he does not understand the discrimination he gets. So many are still ignorant that Luke is human and made physically just like them. Anyway, this is just one example of how autism impacts families and brings undo burdens that should not be there.
There are dentists who actually say: ” I don’t take care of that kind of medical issue (even though they do) because there are “others” who will. I wonder which dentists are the “others?” For now our other was Dr. Sorenson. He was great as well as his competent staff and front office. In the photo –you will see Luke is still smiling!!! He always will.

Central Pain Syndrome

This photo was taken not long after my first brain tumor surgery.

Having a brain tumor was the last thing on my mind (no pun intended) as I dealt with many symptoms leading up to that diagnosis. Apparently it was for the doctors too as they never entertained the thought even after carefully describing my symptoms 3 years earlier than my diagnosis. At least the initial doctor confessed he had “missed” it. I hold no animosity as a doctor that can be apologetic is better than the one who is an ass hole. You all know the type if you have had much medical treatment.
Over two years have gone by since my brain tumor was removed. In fact it is time for my annual MRI soon. I will keep you posted on the results. One of my most lasting and chronic problems I seem to present with these days is called central pain syndrome. It is one of several issues I have going on, but this one is tricky. Treatment for this is difficult. In fact the treatment can be worse than the pain. There is no cure. I hope to share more with you all as I can. I have some tough days and my focus is limited when I do not feel good. I take each moment and am thankful when I am not hurting.
I wanted to share with my readers a very important thing about the brain. Our brain is a vascular organ. If you can imagine your brain as a river with many creeks running through with purposeful directions than you have an idea how important all the blood vessels are in our head. No one knows for sure the cause and effect of certain disease processes that coexist and what may have to happen first for another disorder to occur. Much of medicine is a discovery just waiting to happen. When I had my brain tumor removed, I had a procedure called an embolectomy first than my crainiotomy the next day. It was soon after the embolectomy and being sent to the ICU that I had symptoms like a stroke patient. All the doctors like to deny that the cause of the stroke may have happened on their dime. No one knows for sure, but being a relatively young person ( ok I was in my 40’s when this happened) the most common cause of strokes is disease of the arteries in the brain. We all have heard of problems too that all of us can try to tame. One last thing readers, please work hard on those things you can change with a good doctor helping you: high blood pressure, high cholesterol, and physical inactivity.

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.