Smart Patients Get Smart Care™

The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

Into the Abyss, A Veteran’s VA Journey

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

By Bruce Wright – Patient, Patient Advisor, Patient Educator

Chapter One

My name is Bruce Wright and I am a Patient Advisor as well as Patient Educator for the CLL Society. I have been asked to contribute an article to the CLL Tribune and I am happy to oblige. I am a Vietnam Veteran, who, at first, was reluctant to tell his story; however, due to the diligence and patience of one angel, Betsy Dennison, MS, RN, FNP, Director, Strategic Planning, CLL Society, Inc, I shall tell my tale. We Vietnam Veterans are permanently scarred; from not only from the war itself, but from the reception we received upon returning home from the war alive.

I am the classic American story. Born near Syracuse, New York in 1945 while WW II was still a two-theater war. I grew up in a single parent environment, well grounded by my maternal Grandfather, a Justice of the Peace for 32 years. My high school was an hour bus ride away and limited in sports; but, I did manage to be successful in football and wrestling. Graduating in 1962, in a class of 38 members, I needed another year of post grad studies to become better prepared to attend college. I was fortunate to receive an Honor Military School Appointment to the United States Naval Academy in Annapolis, Maryland in 1963.

The United States was at peace when I entered in 1963, but tranquility was being destroyed through events like the assassinations of President John F. Kennedy and Reverend Martin Luther King. Upon graduation in 1967 The Vietnam Conflict was in full scale war, and that was what I was trained to do – contribute to the success of that event.

My first duty assignment was as the Gunnery and Fire Control Division Officer on the USS Turner Joy DD-951. April 1968 found me making my first steps in Danang, Vietnam (a life altering moment in time – more later). Having successfully fired 23,000+ rounds of 5”54 caliber ammunition in support of the Vietnam war effort, my true passion to fly guided me to alter my career path at the end of that first deployment.

I entered the Naval Aviation Training pipeline and became a Naval Flight Officer, assigned to a fighter squadron, VF-142, flying the premier fighter aircraft at that time – the F-4J Phantom II. The squadron was assigned to Air Wing 14 and embarked upon the USS Enterprise CVAN-65 (first nuclear powered aircraft carrier). I participated in 2 deployments to Vietnam from 1971 – 1973, which included actions in North and South Vietnam plus Thailand. These three deployments provided repeated reinforcement of my life altering moment in April 1968. I received multiple exposures to Agent Orange (AO) while involved in combat operations in Vietnam and Thailand. I continued flying after the Vietnam War until I retired as a Commander after serving 20+ years with 2,400+ flight hours, 220+ combat missions and 400+ carrier landings.

Life continued, with its ups and downs, until I completed my registration the VA system in 2009. I had started the process in 2005, but did not properly follow through, a mistake I lament to this day. I had been exposed to AO many times during my deployments; consequently, I was entered into the AO registry and given an immediate blood test, chest X-ray and tactile exam. The results of the blood test revealed that I had CLL and an abnormal PSA (a later biopsy proved I had Prostate Cancer {PC}). Remember that life-altering moment in 1968 that I previously mentioned? When informed by the HEM/ONC Dr. that I had CLL, I asked “what is that?” The answer was “Google it”.

Chapter Two

Now what do I do???? There is no established, proven path to follow as one commences this journey to receive proper recognition and treatment for one’s contribution to this great country of ours. The VA is divided into two parts. First, the Health Care, which administers to the Veteran’s physical, mental and emotional needs. This consists of neighborhood clinics and regional VA Hospitals. While this is altruistic at first glance, as one peels back the layers of the onion a more unsettled image emerges. The second part of the VA is the organization that receives, analyzes and determines a Veterans eligibility for disability compensation as well as the amount of compensation received for our services rendered to our great country.

I shall first discuss the VA clinics and hospitals. The VA Clinics are staffed with contract employees who are true professionals and caring individuals. They work hard to administer to one’s needs and display the necessary empathy to comfort one’s concerns. The resident nursing staff, Lab, Dental and administrative personnel of the VA Hospital are a great group of people who want to provide the best comfort and care deserved by our Veterans. They all are, however, overworked and understaffed for the case load presented.

The VA Hospital is often 40 to 100 miles away and requires proper prior planning. The quality of service and services are highly variable and not to be handled in a trivial fashion. They are staffed with recent medical school graduates that are doing a “Fellowship” in a particular medical field. In other words, these are doctors who avoid internship and receive residency training in the field of their choice. After a 1 to 2 year experience, they all move on to other locations. The only consistency is that they report to a senior doctor who oversees their efforts and is referred to as “The Attending Doctor”. In the Dental Department the newly graduated Dentists spend even less time under the tutelage of staff dentists. Additionally, not all VA Hospitals offer the same treatment protocols or equipment to execute the protocols. An example of this is a Veteran may receive a dental implant at the Long Beach VA will it is impossible to receive an implant at the La Jolla VA. My own personal example had to do with the determination of what treatment protocol I would employ to treat my PC. The Staff explained the robotic surgery equipment they employed should I desire surgery and the IMRT equipment should I desire a radiation protocol.  A thorough study of available treatment protocols would disclose several other successful protocols to consider; none of which were available at Long Beach VA. I would have to travel to other VA Hospitals around the country to be fully informed of what protocol was done where. This would have been a very costly journey. I selected the Brachytherapy protocol and would have had to travel to the VA Hospital in Seattle Washington to receive said treatment; that being the closest VA Hospital offering me my choice. While the story of my PC journey is a good read, it is a story for another time. Yet, for the record, in my humble opinion, Brachytherapy is the best treatment protocol for PC today.

My personal experience, post diagnosis, was to endure a 5 year “watch and wait” period during which every 90 days blood was drawn and analyzed to monitor my unique journey with CLL. My Fellowship doctor departed 2 years into this journey and I decided to self-advocate, resulting in me requesting to be a patient of the Attending Hem/Onc. It turns out that I was the ONLY patient; ergo, I received first rate continuous treatment for the same doctor for 3 years. At the end of 5 years, it was time to enter treatment for CLL, so I chose to seek treatment at a renowned cancer center in La Jolla, California.

Now I shall discuss the second part of the VA organization that receives, analyzes and determines a Veterans eligibility for disability compensation as well as the amount of compensation received for our services rendered to our country. Honorably discharged/retired Veterans are eligible to receive disability compensation for illnesses, traumas or disabilities incurred during service to our country. The Veteran is “led” to believe that a copy of his DD-214 is all that is necessary for him to receive earned compensation for dedicated service. This is the darkest hour that ALL Veterans must suffer through. The “System” is set up in such a way that it is darned near impossible for the Veteran not to feel absolute frustration, deep angst and profound anger. The administration of this process is so onerous that the response of the Veteran is to often just walk away, cursing, from the seemingly impossible effort to receive proper recognition and compensation. The Veteran justifiably feels like a second-rate citizen, not deserving of recognition – shame on him! The VA expects the Veteran to provide proof of exposure to AO decades after the exposure when records are missing or destroyed. Sure, one could get a Layman’s letter” from a person who served with him at the time; however, often that person has disappeared into the general population or has died. So, if the Veteran did not keep his own personal set records at the time of the exposure (50+ years ago), the records destroyed, and/or the witnesses were dead or disappeared the Veteran is left with his word – and his word is worthless. He is guilty until proven innocent, a liar, a charlatan, gold digger, undeserved, etc. The Vietnam Veteran quickly links this present treatment to the treatment he received upon his return from the war. Welcome home for a job well done? NO, complete degradation, name calling, spit upon, etc. The Veteran went into the men’s room at the airport, changed to civilian clothes and threw  his uniform away, sneaking out of harms way from the demonstrators. No one cares about him, his plight and yearning for assistance.

This part of the VA system was and is still ill-equipped to handle the number of Veterans in need of assistance in the claims process. So, the solution was to form Veteran Service Organizations (VSO) made up of Veterans affiliated with Veteran based fraternal organizations. This costs the VA system nothing and distributes the case load for the preparation, submittal and status of a Veteran’s claim for disability. Sadly, these organizations run the full gamut of quality and performance, often creating their own unique horror stories and amplifying the Veteran’s plight. A Veteran is truly lucky if he affiliates with a VSO who provides the necessary support. If a Veteran wants to change VSO support from one organization to another he must submit a written termination letter and wait until it is approved and distributed; yet another delay in the process. Without a VSO, a Veteran is condemned to an even more difficult journey to receive compensation; hence using a VSO is a necessary evil.

My own journey is submitted as anecdotal evidence of this wretched system. It took me 3 years to receive proper recognition and compensation for my disabilities associated with my service to this country. Along the way my claim was lost by the VA; I was accused of being a liar; I had to remain on the telephone line on hold in excess of 100 minutes to make a connection to lodge an input; three times I had to submit in writing (using a number 2 pencil and lined paper) to the claim review personnel the errors of their calculations. On each submittal they would write back that the error was noted, a correction implemented, and the claim closed, no further to be performed. Had I not immediately appealed their continued error, nothing would have been done. They declared that I was thoroughly and properly processed.

I now freely advocate and help Veterans, regardless of service period with this process – 35 to date.

I received a routine physical exam, for Agent Orange exposure, at the VA Hospital in 2009 and was informed that I had two cancers: Chronic Lymphocytic Leukemia (CLL) and Prostate Cancer (PC). I had to drive home through congested big city traffic on a motorcycle, all the time thinking – I have cancer! I do not know how I did it without crashing. I was told to Google CLL to learn about it. The PC was treated successfully via Brachytherapy and I began a five year period of Watch and Wait (Worry) for the CLL. During this period my WBC rose from a count of 20,000 to 194,000+, my spleen enlarged 19 cm as my RBC and platelet counts descended to minimum levels. I was most fortunate to be encouraged by Terry Evans to join our local CLL Support Group. This group is where I REALLY learned about my disease and took ownership of it. My numbers are 13q deleted, mutated, CD38 negative, ZAP 70 negative and bone marrow 90% CLL involved. My six month treatment protocol with Gazyva began in 2014 and completed in 2015. The results reduced the CLL marrow involvement to 17% and I was evaluated as in remission with Minimum Residual Disease (MRD)+. I currently am a Patient Educator for the CLL Society and participate in establishing Support Groups just like ours around the country.

Originally published in The CLL Tribune Q2 2018.

CLL Society - Living With CLL

When appropriate, the CLL Society will be posting updates and background information on the present Coronavirus pandemic focusing on reliable primary sources of information and avoiding most of the news that is not directly from reliable medical experts or government and world health agencies.