I am Genevieve Douglass, the widow of Vietnam Veteran,
Bob Douglass. In June 1999,
I co-founded the Agent Orange Widows Awareness Coalition
(AOWAC), along with Karen Olszewski, the widow of Vietnam Veteran Robert
Olszewski. Both our husbands died of service-connected diseases
from exposure to Agent Orange and related compounds used when serving
our country in Vietnam. In addition, I am California
Representative for VWIN, Veteran Widows International Network, and a
member of the Lymphoma Research Foundation of America.
Karen and I met at Long Beach Stand Down 1999, an
outreach to homeless veterans. We decided we needed to share our
experiences and the important information we knew about, get more
educated on the issues and launch an organization called the Agent
Orange Widows Awareness Coalition. It is a national awareness
campaign effort to educated Veterans, their family members and the
medical community.
We have talked with many other Vietnam Veterans, their
widows and family members across the nation who are hurting and in the
dark or available resources. We want to work together and build
partnerships with the VA, our government representatives and officials
in better serving our Veterans and military services.
I bring to you the stories of my husband, Bob, and
others, who suffer and die from lymphoma and other service-connected
diseases. Bob’s non-Hodgkin’s lymphoma was service-connected and
caused from exposure to herbicides, such as Agent Orange, used in
Vietnam over 30 years ago.
Let me begin with the brief history about Bob and our
experience with lymphoma. Bob served in the Army from 1967-1970.
From 1969-1970, he served in Vietnam for 14 months, as a cook in a base
camp near Da Nang.
We
met after his return to the United States in 1970. We married that
same year. Bob worked for Los Angeles County for 27 years, with most of
his career in financial management for health services. We were married
for 27 years and raised two sons, Shawn and Daniel.
After celebrating our 25th Wedding Anniversary
and having finished raising our two sons, Shawn and Daniel, we talked
about what we would do with the rest of our lives together. We
were still young and had the freedom to choose to go wherever our dreams
would take us.
The very next year while Bob was on his way to a
chiropractor appointment, he discovered a small lump on the side of his
neck. His chiropractor told him to get it checked right away.
So, an appointment was made with an Ear, Nose and Throat Specialist, and
then a biopsy was performed within two weeks. Within this
time frame, the lump had grown so fast that it blocked his trachea,
preventing Bob from eating solid food. He was diagnosed Sept 3rd,
1997 with lymphoma. He was on a liquid diet, lost 25 pounds
and started loosing his voice all in the first month. This type of
lymphoma is very aggressive.
We were told he was young and would most likely respond
to treatment, giving us the impression that everything would be OK.
At this time our youngest son, Daniel, was in the middle of boot camp at
USMC San Diego. He was determined to be in a leadership position and was
responsible as a Squad Leader. We did not want to upset his goals
and plans in the Marine Corp, so we chose to not notify him until he
graduated from boot camp.
We had Kaiser Health coverage. In trying to figure
out where this disease could have originated, we vaguely remembered
stories of disease possibly related to Agent Orange. You see, Bob
was a very healthy man, rarely ill with a flu or cold. So, we
specifically asked our oncologist if there was at all a connection to
Vietnam service and Agent Orange that they knew of. They said,
“No, they were not aware of any connection.”
We proceeded with the recommended treatment of
chemotherapy and radiation for the next eight months. Bob did
respond and the tumor was shrunk to a mere trace of scar tissue.
Towards the end of May 1998, Bob was told he was in remission and given
a clean bill of health, but would be monitored regularly through blood
tests.
In July of 1998, our youngest son, Cpl. Daniel Douglass,
was preparing to marry his high school sweetheart. Bob was doing
well; we thought we had won the cancer war. We all enjoyed a
wonderful wedding. But, the next month, August 1998, Bob started
having discomfort in his stomach area. The next thing we knew, he
was re-diagnosed with a return of non-Hodgkin’s lymphoma, only this time
in his liver. It was very aggressive. He previously had a
clear gallium and liver scan the end of May and now, he had three tumors
of significant size in three different areas of his liver, thereby
eliminating the possibility of liver surgery.
A
more aggressive treatment of chemotherapy was administered. Bob
was very brave, with a positive attitude and faith in God to help
sustain all of us. We decided to go for a second opinion on
treatment. So, we went to UCLA Medical Research Center.
There they confirmed diagnosis and the treatment prescribed by Kaiser.
The goal was to get Bob as close to remission as possible, and then,
perform a stem cell transplant for long-term results. Again, we
specifically asked these research doctors at UCLA if they knew of any
possible connection to Vietnam service, Agent Orange and lymphoma.
The answer they gave was a shrug of the shoulders and a “No” response.
I have it on tape from our recorded appointment discussion.
So, we proceeded with the recommended high-dose
chemotherapy treatment. Now, we were now in contact with the
Lymphoma Research Foundation of America, (LRFA), through internet cancer
research. For some reason, I asked the question again of a LRFA
representative, “Is lymphoma at all connected to Vietnam service, Agent
Orange and Veterans?” I finally found someone who knew. The
answer was, “Yes, and we have a two page summary report I can send you.”
After reading the report, we called the Long Beach VA Medical Center for
assistance. This was November 1998.
At the VA Hospital, we were referred to the regular
registration process, and then to Agent Orange Registry. We waited six
weeks to get an appointment for an Agent Orange clinical exam. It
was frustrating, because at the time, Bob was not responding to
treatment. Our Kaiser oncologist was stumped and very concerned.
She wanted to talk with a VA oncologist for another opinion about
possible successful treatments for Vietnam Veterans with lymphoma.
We assumed the VA doctors would be the experts, with the most experience
with lymphoma in Vietnam Veterans. Only the Agent Orange exam was
not with an oncologist, but a general practice physician.
I called the oncology department to see if we could get
in for a review of Bob’s case. We made copies of his medical file
and left it at the VA Long Beach for Dr. Slater’s review. Dr Slater is
the head oncologist at VA Long Beach Medical Center. We went to
our appointment with the Agent Orange office. Basically, we filled
out paper work related to Bob’s Vietnam service; Bob saw the GP
physician, (I was not allowed in with Bob during this doctors exam,
which I find outrageous since Bob was so sick and could not focus or
remember information at this time). After he went for routine
blood and chest x-ray work, his file was stamped Agent Orange and we
were referred to the Disability Benefits office to file a claim.
We filed on January 6th, 1999.
A week later, we finally got an appointment with Dr.
Slater, a VA oncologist, who reviewed Bob’s medical file and suggested
the new treatment of Rituxin for Bob. With that, we went back to
Kaiser for Rituxan treatment the middle of January 1999. It is not
as harsh a treatment on the body as traditional chemotherapy, since it
was an antibody that works on a different cellular level. It was
suggested that Bob get Rituxan treatments once a week for a month, then
re-scan for results. If he showed improvement, he would receive
one more series of treatments for another month. That was our only
hope. And we did have hope.
Bob
finished his first series of Rituxan and was getting ready to schedule a
CT scan, when he took a fast downward spiral on February 10th.
He began to quickly lose motor control and became mentally confused.
I called Kaiser and told them I thought we needed hospice help. Nine
days later, on February 19th at noon, Bob died a sudden, unexpected
death, leaving me a widow and my two sons, Shawn and Daniel, fatherless.
Bob would never get to be a grandfather. He would have been a
great one, that’s for sure. Our sons and future grandchildren will miss
out on life without Bob. Now, I have had to experience widowhood
and, at the same time, the empty nest season of my life, all alone
without my loving husband, Bob.
Four months later, Bob’s VA disability was approved, but
he only lived for 7 weeks after his claim was filed. So, he only
received one month of compensation for his eighteen month long illness.
Because our nation’s medical community does not know of the connection
between lymphoma and all the other diseases related to Vietnam Veterans
health risks and the birth defects and illnesses of their post-war
children, our veterans and their families suffer needlessly.
Bob worked up until a week before his death just to keep
his health coverage and some income for his family. This was needless as
well. If our medical communities had known the relationship of
veterans and service-connected diseases, Bob could have gone on
disability through his work and the VA, and still have provided for his
family’s needs, but most importantly, he could have concentrated on his
health recovery. We also did not know how deadly this disease
really is. We would have made other priority decisions, spent more
time together and would have been better prepared for the inevitable,
Bob’s death from lymphoma.
Since Bob’s death, I traveled to Washington, DC in April
of ’99, with the Lymphoma Research Foundation. They hosted
educational forums in DC and we met with Congressional and Senate
Representatives to request additional lymphoma legislative language in
the proposed budgets for the future and additional research funds and
resources specifically for lymphoma.
I was the Vietnam story, sharing the now known
information about the connection between lymphoma and Vietnam Veterans.
I discovered the lymphoma research experts did not know of this
connection. They were not doing research with Vietnam Veterans
because they were unaware of the need. When we know what
causes a disease, like dioxin from the herbicides used in Vietnam, we
can better find solutions in research and treatment. The
researchers know what to look for; dioxin exposure effects.
In April 2000, I traveled again to Washington, DC for the
Lymphoma Research Foundation to testify before the House Appropriations
Sub-Committee on Veteran Affairs, HUD and Special Projects for the
Presidential Budget 2000-2001. Congressman Steve Horn of
California introduced me before his colleagues. There I gave testimony
about Bob’s and my experiences with lymphoma, shared statistics and
requested additional funding for lymphoma research for Vietnam Veterans
and their post-war children.
In
previous VA studies, it seems that the VA was interested only in some
statistical data research, not research for better treatment and
solutions to curing lymphoma and the other diseases in Vietnam veterans
and their post-war children. The data is difficult to obtain and
it produces insufficient results, even after thirty years since the war
began. In actuality the accurate and efficient data does not
exist. The VA staff does not have access to the data or the data
collection system to answer the simple questions we ask. This is
not acceptable.
Our Veterans and their families deserve much better care
and respect for serving our country in the preservation of freedom.
We must do more comprehensive and complete research with better results.
We have a generation of Veterans sick and dying across the nation,
leaving family’s devastated in grief, despair and financial distress.
We must do better for them.
It is my understanding that the percentage of Veterans
who use the VA Medical system is only 25% nationwide. The civilian
medical community needs to be educated on the Veteran service-connected
diseases. Even the San Diego Navy Hospital Oncology Department did
not know of the diseases associated to military service. My
mother-in-law, Bob’s mom, Irene Frey, volunteers at the San Diego Navy
Oncology Department and is solely educating the Navy doctors about the
service-connected diseases and giving them copies of the Agent Orange
Reviews. She is seventy-four years old. This amazes me.
A National Awareness Campaign is necessary to reach
Veterans and the entire national medical community to educate them about
the medical health risks and benefit support that is available to those
that qualify. I understand the financial implications here.
But, I ask you to consider, if it was you or your child or grandchild
with an illness associated to military service, wouldn’t you want to
know of the health risks and possible benefits for your family? I
would think so.
In my quest for information, I have discovered some very
interesting findings. One is that the local Agent Orange/Persian
Gulf Registry Offices in the VA Medical Centers do not document in their
computer databases the disease diagnosis of Veterans. A paper
registration form contains this diagnosis only and has to travel to DC
to the VA Agent Orange Registry for data entry. It seems logical
for all the registries to post this vital information in their local
registry for information protection and security.
Second, in working with the Head of the Cancer Registry
Program at Long Beach VA Medical Center, the Cancer Program and the VA
Cancer Tumor Registry, we discovered that the Cancer Tumor Registry and
the Agent Orange Registry are not cross-referenced for better
statistical documentation. So, many cases of cancer that process
through the Agent Orange Registry with Veterans that do not have cancer
treatments at the VA Medical Center, do not get added to the Cancer
Registry at all. So the statistics are not accurate. This
should be corrected.
We
ask you for your assistance to improve current research efforts and
treatment solutions for our veterans and their post-war children, with
improve collaborative cross-referenced databases in the United States.
The overwhelming increase of illness and deaths of Vietnam Veterans and
their post-war children in this nation are staggering. More must
be done here in the US for our veterans, to truly assist other countries
affected by exposure to dioxin and related compounds used in war.
Other countries, such as Australia and New Zealand, have done more
accurate and effective research and offered better assistance for their
veterans than we have in the US. This is unacceptable and
disrespectful to our veterans. We must do more for them.
They deserve more; they fought for our freedom and the freedom of other
countries.
Since the nineties, lymphoma has increased to become the
second highest incidence rate of cancer annually. There are
500,000 reported cases of lymphoma in the US today. An additional
87,000 new cases are diagnosed annually. The State of California
ranks number one in reported lymphoma cases in the nation. Los
Angeles County ranks number one in nationwide county statistics; second,
is San Diego County.
Both of these counties have significant numbers of
military Veterans living in them. I ask you, “How many of these
lymphoma cases are Vietnam Veterans or their post-war children?
And how many of them and their doctors don’t know of the connection?
Are we asking the question in our nationwide cancer registries, “Are you
a veteran?” And, “Of what wars?” And, “Are you a post-war child of a
Veteran?”
This important data is necessary and needed in our quest
for specific data on the health of our veterans nationwide. I suggest we
add these questions to statistical data systems and develop a national
awareness campaign to find especially our Vietnam Veterans and educate
the medical community in the United States of the service-connected
diseases of veterans, so they can better assist their patients and refer
them to the VA for additional assistance.
Please seriously consider our request as we try to assist
those that must face the challenge of fighting for their lives once
again, only this time here on United States soil.
Thank you very much for your attention to this important
issue.
Genevieve Douglass
AOWAC Co-Founder
