From Battlefront to Homefront: A Vietnam Veteran's Journey through Cancer and Advocacy

Can you imagine fighting a war only to return home and discover an entirely different battle looms ahead? Our guest for today's episode, Bruce Wright, doesn't need to imagine, he's lived it. Bruce, a Vietnam veteran, was exposed to Agent Orange during his service, leading to a diagnosis of chronic lymphocytic leukemia (CLL) years later. His story is one of survival, resilience, and advocacy. Bruce takes us through his journey within the VA system, emphasizing the significance of proactive healthcare, expert consultations, and seeking help when facing the aftermath of Agent Orange exposure.

In addition to his personal story, Bruce introduces us to the CLL Society, a beacon of support for veterans grappling with a CLL diagnosis. As the chair of the Patient Advisory Board, Bruce has been instrumental in providing guidance, resources, and a sense of community to hundreds of veterans. His mission is not just about offering help but empowering other veterans to receive the disability rating they've earned and live their lives to the fullest. Immerse yourself in this powerful conversation and learn about the unwavering spirit of a veteran turned advocate. Remember, reaching out for help is not a sign of weakness, but a testament to strength. Bruce's story is a powerful reminder of that.

Transcript

Larry Zilliox: 0:15

Good morning. I'm your host, larry Zilliox, Director of Culinary Services here at the Warrior Retreat at Bull Run, and today our guest is Bruce Wright. He is a Navy veteran, a former commander, Vietnam veteran, and he is the chair of the Patient Board for an organization called CLL and I'm gonna let him tell you a little bit about what the organization is and what they do. First, welcome to the podcast, Bruce.

Bruce Wright: 0:49

Thank you for having me, larry. My time serving was during Vietnam, which I made three deployments to Vietnam One on a destroyer in 1968, and then two more on an aircraft carrier in 1971, two and three. During that period of time I spent time in country, both either in Da Nang in Vietnam or over in the Confonom or Bangkok, thailand. So my exposure to Agent Orange occurred in several places and I came down with two cancers related to Agent Orange Cross-state cancer, which is a subject for another day, and the current subject, chronic Lepusitic leukemia. I was a member of the American Legion and went in for an exam at the VA in Long Beach, california, and I answered some questions and they put me in the Agent Orange registry which gave me a touchy feelly exam, an X-ray and a blood draw. The results of those indicated to the people at the Long Beach VA that I had cross-state cancer and leukemia.

Bruce Wright: 2:02

I was called in to see the doctor about leukemia and after he gave me a physical exam, he said you have cancer. I went wow and he said it's CLL. And I said what is CLL? And he said Google it. And according to Dr Google, I shouldn't be talking to you now because I only had five years of life left. That was in 2009. So here we are 2023.

Larry Zilliox: 2:34

Yeah.

Bruce Wright: 2:35

And I'm talking to you. So I was looking around on the web and came in contact with an organization that was very local in Orange County, turns out to be the mother organization that later became what's known as the CLL Society.

Larry Zilliox: 2:52

Right.

Bruce Wright: 2:53

Our website is www. cllsociety. org and it's available for everybody. That has a wonderful web interface and many selections available to the curious person who is wondering about CLL. Through that organization, I became more and more involved because when I found out I had CLL, I made an application to the VA for disability, which took three years for me to get my disability assigned. That should never happen to a vet. That's a story for another day too. Okay. So with the help of a wonderful veteran service officer, VSO, I was able to finally achieve my disability, which is over 100%, including special monthly compensation. Wanting to pay it forward, I took it upon myself to stay active with the CLL society, become involved with it.

Larry Zilliox: 3:55

Right.

Bruce Wright: 3:55

It was founded in 2013 by a doctor, Brian Kaufman, who himself has CLL and had to give up his medical practice because it was a family practice and the little people were giving him infections Just kids coming down with whatever they get and unfortunately he gets sick. And when we have CLL, we're immuno compromised, our immune system doesn't work right and it's a blood cancer that never goes away. We can treat it, but it's not curable. Getting it involved I started helping vets who came to the CLL society and wanted to talk to someone. They sent them to me, a veteran, so it could be that that go ahead.

Larry Zilliox: 4:39

So do you see a lot of veterans coming down with this? That would seem to indicate that it's a direct result of exposure to age and orange.

Bruce Wright: 4:50

Yeah, I have encountered many who have CLL or other forms of disabilities. I've helped 102 veterans to date achieve the disabilities that they've earned by serving their country. Not all of it's no l, but a preponderance of it is. It's something that seems to come up on you often later in life and you're really not aware you have it until you get a blood test done one day and they call you in and say something's abnormal here, and that's the first time you see it. You learn that you have CLL.

Larry Zilliox: 5:25

How prevalent is expert treatment for it within the VA.

Bruce Wright: 5:31

The VA's are teaching hospitals. They take graduates from different universities Long Beach, where I go as doctors who graduate from University of California at Irvine and they do their residency training there at the hospital and once they've completed it then they move on. There's a core staff at the VA which may have levels of competency but you usually don't see them. They're busy training the newbies and when I was told by the newbie to go Google it, he shortly after that moved on to a Washington state where he wanted to set up this practice. So they have an overseer called an attending physician who was on the staff at UCI as a doctor in residency and he was the attending physician that signed off approving the diagnosis.

Bruce Wright: 6:31

So I just became proactive, which is how they tell veterans is own your disease, learn everything you can about it and then be proactive and seek the help you need. So I went to the attending physician and I said Do you have any patients? And he said, no, I keep an eye on these guys here. And I said, well, you have a patient. Now that's me, do you mind? And he said, well, no, I guess not. So we had a wonderful relationship until he retired and my CLL became aggressive enough that I needed to have do some treatment to it to put it back in its place.

Larry Zilliox: 7:11

Do you know of any veterans that are receiving treatment in and through the VA's treatment in the community care program with Local experts?

Bruce Wright: 7:22

No, I am not aware of that. They usually try to treat you within their own network. It's an organization like the CLL Society which gets you to learn that there are other doctors out there that are treating CLL. From the CLL Society, one of the major recommendations we do is inform the patient to seek an expert If a doctor is treating three to five patients a year for CLL as well as other forms of leukemia or lymphoma. That's not as good as seeing a doctor who treats nothing but CLL, and there are several of those in California alone.

Larry Zilliox: 8:06

I looked on the website and I did notice that you can find an expert provider, but it seems like experts are few and far between. When I looked up Virginia, where we're at here, there were three. There was nothing listed for Washington DC and nothing listed for West Virginia. So are there not that many experts out there?

Bruce Wright: 8:33

There appear to be more out here in California than what you're experiencing back east. That's normal. It's at a point where I would then tell you, as a veteran, is this is a critical juncture in your life path. Spoiler yourself. Do everything you can to get to an expert. Let the expert tell you what's really going on. It may cost you more and take more travel time, but it's worth your help to do it. Sure, we have embedded within the CLL Society website what we call Expert Access, which we have several of those experts that we have listed, some of which I've helped recruit, who you can set up an appointment with and take your medical data that you've received to date from the doctor you're currently seeing and ask for no extra charge for this expert to review your case, see what's going on and to provide you recommendations and answer your questions, all at no cost to you.

Larry Zilliox: 9:36

And they would find those providers through the society.

Bruce Wright: 9:41

then yes, sir, On our website we have a list just for what we call Expert Access.

Larry Zilliox: 9:47

OK, One of the questions that I had was that I noticed in the latest American Legion magazine there was an article about the VA may widen coverage under the PAC Act to include some acute leukemias and chronic leukemias. Do you know if they're looking at CLL for that?

Bruce Wright: 10:10

Well, cll is already on the Presumptive Disease list and so you don't even have to prove the origin of it. It's accepted already. There are other leukemias and such informants that are there which are not on the list but the VA is handling, and they're expanding. I'll give you an anecdotal evidence the lady who keeps care of our database at our local mother CLL Society group in Orange County, california. Her husband was a artillery officer stationed in the DMZ of Korea and he was in Korea in the DMZ at the time they used Agent Orange. He came down with a niche form of lymphoma called I can't remember to say the name LPL. I helped him fill out his forms and he got 100% disability. So he and his wife are both patients and caregivers for each other.

Larry Zilliox: 11:09

Wow. I think the other thing that's important to understand for our veteran listeners here is that you don't have to be a Vietnam veteran to have been affected by Agent Orange. So I myself, I filed for compensation under the PAC Act and an agent exposure when I was stationed on Guam in the 70s, and so you could be where it was stored, you could be where the planes and the equipment were worked on, so you don't necessarily have to have been in country, and so it's important for those listeners out there. If you're not sure if you're covered, check with the VA, you'll know. They'll know where you were stationed and whether or not you might be covered under the PAC Act. Or certainly, if you have this condition as presumptive, then really it's gonna be where you were stationed or where you operated in the timeframe that it will come down to. Since the there's no causal connection that you have to prove.

Bruce Wright: 12:27

Yes, sir, I'll give you another anecdotal one. A gentleman that worked in the Metalsmith's shop on the USS Kitty Hawk and he got on the Kitty Hawk when it arrived back from Vietnam. He worked on it and then when it deployed to Vietnam his time and service remaining was less than the full deployment, so they put him ashore early. So he did four years and the Navy and got out. He worked in the aerospace industry and then retired and he came down with CLL. He had no actual verifiable exposure Agent Orange.

Bruce Wright: 12:59

He lived in Georgia, he came to our group, he talked with me. I told him to get into the VA hospital closest one to him in Georgia and put in the fact that he has CLL. He had been in a trial study for the latest drug out of the time called imbruvica I, brucianib. That's a tyrosine kinase inhibitor and he was through with the clinical trial. Therefore he couldn't get any more medicine and he couldn't afford it, didn't have the money. And so he went ahead and just said well, I guess I'm just gonna die from this because I don't have the wherewithal to pay for it.

Bruce Wright: 13:35

I told him to get into the VA and just tell him that he has CLL, doesn't matter where he got it, he has it. They evaluated him, said he has CLL and they said we'll treat you Okay. And they put him in treatment and they then did a means test on his income and he and his wife had had to sell their house and lived in their camping trailer and he just didn't have the funds to treat himself or to live. And the VA said we'll take care of you and the normal cost at the time for a 90 day supply of those pills was very expensive $10,000 a month. Wow.

Bruce Wright: 14:12

Okay. So they evaluated him and they said, okay, you're a veteran, you have CLL. Here's 90 days supply of the pills will cost you $45.

Larry Zilliox: 14:20

Yeah, yeah.

Bruce Wright: 14:22

Then later they did another means test. He said, no, it will cost you 25. Then the final means tested on him. It cost him nothing and he's alive today.

Larry Zilliox: 14:32

Well, let me tell you, I'm really I'm glad that you're out there advocating for veterans, especially with something a cancer that can be so complicated, in trying to understand what options are available to you. And I've been on the website, I've been looking at the website. It is a very good website. It's very well put together. There's a ton of resources on it. I mean it would really, if you wanted to get down into the weeds, you could be on this for days, but it looks like it's got plenty of resources that will point you to the right people. The main thing, as you say, is to get into the VA and get tested and get compensated for it and get that treatment. That really is the key. What's the last thing that you want people to know about the society and about CLL?

Bruce Wright: 15:28

CLL. Everyone has CLL, but the next layer down, each one of us has a different form of CLL. It's very complicated, as you just said, and we're all just slightly different in each other. So we have the same name disease, but we're all looked at differently and treated differently. Very complicated, exactly right. The next thing I want to let the veterans know is all that you do with the CLL society is free. It cost you nothing but your discretionary time to spend your time looking at the website and learning about your disease, how to handle it, how to be treated and how to live a happy, productive life, which we can with this particular disease. You have time to get it figured out and get it treated, and the medicines that are around now are profoundly better. The original medicines were derivatives of mustard gas and were terrible on the bone marrow.

Bruce Wright: 16:27

Today's medicines are not. I've been treated twice with a monoclonal antibody and seven years between treatments and I'm doing fine. It's all good. You come and you join a group. Cost you nothing to join a group except to fill out a form and your email address and a phone number, and you'll find that all of us are enjoying full lives. And you'll soon learn this is not a group that's crying and weeping. This is a group that's laughing and scratching and enjoying life every day and we welcome you. It's the disease you never wanted to get, but now that you've got it, you've got a whole bunch of friends out there.

Larry Zilliox: 17:03

Great. Well, listen, bruce, thanks for joining us today. We really appreciate it. This is such valuable information. I'm afraid that some of these veterans that are stricken with this are just not aware of how and where to get help, and this is just so, so important. So, listen, thank you so much for joining us, and I really appreciate it.

Bruce Wright: 17:29

It was a pleasure talking with you and I live with this thought. This is for you as well as anyone else. You cannot call me too much, email me too much or text me too much. We can't cram it all in 30 minutes, but I'm here for you tomorrow, the next day too.

Larry Zilliox: 17:43

Great, really appreciate that. So have a great night and for our listeners. Thanks for listening and we'll have another episode Monday morning at 5 am, so take care.