Monday, December 19, 2016

Twenty Years Ago This Month: "Mr. Reno, You Have Lymphoma!"

Twenty years ago this month, I lay silent, scared and shaking in a cold, antiseptic surgery recovery room with a warm blanket wrapped tightly around me waiting for an ear, nose and throat doctor to tell me whether or not I had cancer. 

A few weeks earlier I had visited his office to check out a walnut-sized lump on my neck about three inches to the right and below my Adam's Apple. While cancer did briefly cross my mind when I first discovered the lump, I quickly dismissed it. Not possible, I thought. I'm just too healthy.

The doctor initially did a needle biopsy of the lump, which came back inconclusive. But when I came into the exam room he was holding a folder on which the word "LYMPHOMA" was written in large type, all caps. 

Obviously I wasn't meant to see that. My heart started beating super fast. Tears welled up in my eyes."Oh, shit," is all I could say. He reassured me it wasn't definite, and that only the surgical removal of the swollen lymph node would tell us for certain. 

When he entered that chilly recovery room, with no emotion on his face and in a monotone voice, he said, "Mr. Reno, you have lymphoma. I'll contact the oncologist," and walked out. Yes, he flunked Bedside Manner 101. 

Throughout the cancer diagnostic process, I kept thinking it was a bad dream from which I would awaken. At other times, I honestly felt like they had the wrong guy and that they were looking at the wrong chart.

But it was all real. I was 35 years old, living on the beach in San Diego and engaged to the girl of my dreams. I was an athlete and surfer who had a great career as a correspondent with Newsweek. I didn't smoke. I was very health-conscious. I was, in a word, happy.

After doing the subsequent scans and tests, the oncologist gave me the official diagnosis: Stage IV follicular non-Hodgkin's lymphoma. It was bad. There was a very large tumor in my nasal pharynx. 

There were also tumors in my neck, abdomen and pelvis. The oncologist said I could live three to five years.

I started chemotherapy a few days after Christmas. But not before my girlfriend, Gabriela, and I got married. The wedding took place 20 years ago today: Dec. 19, 1996. Needless to say, it was the most bittersweet day of my life. 

I was so freaking scared of the chemo and of dying. But I was ecstatic that Gabby chose to be my wife as I headed down that dark road. I know for sure that I would not be alive without Gabby's love these last 20 years. And I am even more in love with her today than I was the day we recited our vows and I prepared to start my treatment.

We had a big, bold, beautiful Gatsby-themed wedding planned for the following April, but we canceled that and instead went down to the San Diego County building and had a quick, no-frills wedding. Just me, my wife, and my sister, Michele. 

The chemo was even worse than I expected. It was brutal for me. Thankfully, not everyone gets as sick as I did. I got very, very sick. But I got through it. And I kept working, at least through most of it. I've never stopped working in fact.

My Roller Coaster Life Since the Diagnosis

Since my initial diagnosis, the cancer has recurred, a few times. I've fought it off with a combination of integrative/holistic things and traditional pharmaceutical treatments. 

I opted to enroll in a clinical trial for an experimental radio-immunotherapy treatment called Bexxar, which, along with all the dietary, lifestyle and supplemental things I was doing put me in remission for about five times as long as the chemo gave me.

There have been some very high highs and some very low lows in the past 20 years. I've had many difficult health issues related to the cancer, and some that are perhaps not related. 

I've learned a lot about myself, and about human nature. Perhaps the most surprising thing I've learned is that in the eyes of others, even those you love and who love you, you at some point become your cancer.

Despite all your successes post-diagnosis, despite all the things you overcome, including sickness, fear, physical pain and emotional turmoil, people eventually stop differentiating between you and your illness. 

People conclude that if you're sick, that is just who you are. You essentially become your illness. If you're unable to do something in your life, whether it's taking your daughter to school or attending a family reunion or wedding of a close friend, at some point people in your life no longer say it's because you were dealt this bad hand. They just see it almost as your choice.

At some point, people simply see you for your inabilities. They blame you, not your illness. It's not a conscious or mean-spirited thing. It is I think largely involuntary. It's human nature, I guess. And it is based on both ignorance and fear. Everyone's afraid of getting cancer, of getting sick.

We're Still Here!

So, for every cancer patient and survivor or anyone reading this who has battled any serious illness, I want you you to please remind yourself these very important words: you are not your illness!

You didn't ask for any of this. You don't deserve any of this. You are not to blame for any of this. And it is not your fault that sickness and pain prevent you from doing the things you want or even need to do. 

You are not the things you can't do. You are in fact all the amazing things you can do and have been able to accomplish despite being sick and in pain -- no matter how inconsequential they might seem to someone who has never battled serious illness or chronic pain. 

Despite being scared, despite being in physical pain, despite everything, you are still here. From the moment you hear those words that you have cancer, you are a survivor. And everyone who has heard those words is my hero. 

This month, as I celebrate 20 years of survival, I want to express my admiration and love to all my fellow survivors. Not just those of you who've survived cancer. But those of you who've survived any illness. 

And I want to send specific love and congratulations to anyone who's battled massive chronic pain. It isn't easy, y'all. But I remain a relentless optimist. Even though I'm often either sick and/or in pain, I still love my life. I still love my family. I still love my friends. I still love my career. I am a  proud cancer survivor. And I am not my illness!

Friday, November 11, 2016

Renowned Gulf War Illness Researcher Urges Americans: Don't Forget the Men and Women of the "Forgotten War" on Veterans Day

Beatrice Golomb is one of my heroes. While you may not immediately recognize her name, she is one of the world's leaders in the study of the causes of and potential treatments for Gulf War Illness (GWI), the confounding condition that plagues hundreds of thousands of our veterans who served in the 1990-1991 Gulf War.

The Gulf War, also known as Operation Desert Storm, has been rightly called "The New Forgotten War." People think because the conflict was so short that there were relatively few casualties. But GWI, which studies now show was caused by our troops’ exposure to a variety of toxic chemicals while on active duty in the Gulf, has been as devestating to our veterans as exposure to Agent Orange was during the Vietnam War..

Gulf War Illness is a horrible condition that is accompanied by a large number of often debilitating symptoms. And it's shamefully taken the Department of Veterans Affairs (VA) more than a generation to even begin to adequately recognize that this condition is real and that it is affecting the lives of so many of our brave men and women who honorably served. The VA, at virtually every turn, has downplayed GWI and accused our veterans who suffer from it of being liars.

Golomb, who's leading the way to find treatments for GWI, is my favorite kind of scientist. She cares about people. She gets it. She understands that her work in the lab has human, very real-world ramifications and potentially improves health. She is relentless in her pursuit of knowledge that will help our veterans live better lives. 

Golomb, a professor of medicine at the University of California, San Diego (UCSD), served as a primary care physician for a panel of veterans for more than 15 years, and has served as a health consultant at RAND. 

Her research is broad and accomplished, but she is best known for her work on Gulf War illness, statins, placebos – and chocolate. Dr. Golomb has a very urgent message to share, and I’m honored to have her as our guest blogger on this Veteran’s Day 2016:


Beatrice Golomb, MD, PhD
This Veterans Day is a good opportunity to remember veterans of the 1990-91 Persian Gulf War, who have borne singular challenges. Of the 700,000 US personnel deployed in that War, an estimated one-quarter to one-third of them developed chronic health problems, attributable to their service, that evidence shows have not abated in the 25-plus years that have followed.

Fatigue, muscle pain, weakness, cognitive challenges, gastrointestinal, sleep and respiratory problems are among the symptoms most often experienced. Characteristically, multiple domains are affected in veterans with “Gulf War illness” (GWI), with symptoms that are moderate to severe.

Rates of this symptom complex are markedly higher among 1990-91 veterans who were deployed to the Gulf than among veterans who weren’t deployed, or who were deployed in other conflicts. Though routine blood tests are normal, affected veterans show objective changes in a spectrum of tests, ranging from autoimmune and “autonomic” functions (like heart rate control) to clotting and inflammation.

Studies have also shown heightened risk of health conditions, some serious, like ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease, a fatal muscle-wasting condition), and, for some, brain cancer.

A quarter century has elapsed since the Gulf War, and many who served feel they are the forgotten veterans – and feel an urgency to see GWI understood. The Holy Grail to these veterans is effective treatments, to alleviate the problems they developed, as a consequence of their service to their country – while they are alive to reap the benefits.

GWI is not synonymous with the signature conditions of more recent conflicts. Post-Traumatic Stress (PTSD) is due to psychological injury; Traumatic Brain Injury (TBI) to mechanical injury (e.g. blast injury from improvised explosive devices or IEDs).

For GWI, convergent evidence implicates chemical injury. Stress does not significantly relate to GWI, while again and again, key chemical exposures do. The strongest evidence implicates “acetylcholinesterase inhibitors” (“AChEi”), a class of chemicals that encompass nerve gas (~100,000 were exposed when US personnel demolished an Iraqi chemical munitions depot at Khamisiyah), pesticides, especially organophosphates and carbamates, used widely and sometimes overzealously; and a nerve agent pretreatment pill, pyridostigmine bromide (“PB”) given to ~250,000 of those 700,000 deployed.

It was thought that PB might protect soldiers in event of a nerve agent attack. My 1999 RAND report showed these pills would be expected to harm rather than protect – for all nerve agents except possibly one, which Iraq did not have. This led to a change in US military policy regarding use of this drug, which subsequent deployed US veterans have not taken.

The ground war for the 1990-91 conflict lasted just four days, and rates of PTSD were lower than in veterans of other conflicts. While psychological stress has no relationship to GWI in analyses that adjust for other exposures, the aforementioned chemicals show a clear “dose-response” relationship to GWI: 

Those taking more PB pills become ill more, and became more ill; those closer to the nerve gas demolition show more brain abnormalities on MRI imaging, worse cognitive function, and increased risk of brain cancer.

Specific enzymes detoxify these chemicals: genetic variants of these enzymes that are less good at detoxifying (resulting in a higher de facto exposure), are linked to heightened risk of GWI. Because veterans declared their exposure and health status without knowing their genetics; and because veterans cannot manipulate their genetics based on suggestibility or media influence, which some have tried to claim accounts for GWI, this is especially powerful evidence for a causal link to chemical exposure.

Evidence now shows that civilians occupationally exposed to these chemicals – again, particularly those whose genetics heighten their vulnerability to these toxins – show similar health problems, providing important “triangulating” evidence. 

This underscores that research to understand GWI has ramifications extending beyond Gulf War veterans to other military, and beyond military to civilians.

New life has breathed into Gulf War research in the last few years, via the Department of Defense's (DoD) Congressionally Directed Medical Research Program on Gulf War illness. This has enabled many qualified researchers with good ideas, not just those with >5/8 VA appointments, to strive to understand this condition. 

Disclosure: I am a recipient. My group, for instance, has shown that affected veterans have altered lipids, and defective production of cell energy - dysfunction of “mitochondria," and that their symptoms and function improve with coenzyme Q10, a dietary supplement that supports energy production. Our current projects follow-up on these, assess effects of treatments tried, and look at genetics of antioxidant toxin protection.

In my view, and the view of many veterans, the DoD is making more progress in less time with far less money, by coupling a will to understand the issue with an approach that actually heeds the input of those with the greatest stake – affected veterans – in funding decisions. “Relevancy review” by Gulf War veterans complements the separate scientific review – something I think should be required for all funding programs.

These veterans’ service came at a great price. Those who might wish to help affected Gulf War veterans can do so in several ways, by helping in research, e.g. as healthy control subjects, volunteering, or donating to help defray costs for veterans’ participation in, or travel to, research.

Those who might wish to help, or learn more, can call 858 558-4950 x201.