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Posted on August 8, 2018

Dear friends,

On Saturday night, I posted this piece on Facebook and thought I’d send it directly to you.

I’m sitting up in the middle of the night, in too much pain to sleep. I’ve been reflecting on my journey with mesothelioma and the fight against asbestos interests, and how things have changed over time. So please forgive me if this is too long to read, but there are some things I want to get off my chest, so to speak. I hope you will find value in this.

First, a bit of an update on my medical status. I had been having pain in my upper back for months, starting around the time our house burned in the Tubbs Fire last October. It had become gradually worse, and I was chalking it up to sleeping on a bed that was way too soft in the rental we were occupying. (We’ve now moved into a home that we are renovating around us, but we have a great bed!)

I was having increasing symptoms of muscle weakness in my legs and arms, numbness and tingling, and such. My wonderful oncologist decided I ought to have a spinal MRI, just in case. That happened in late July and revealed a tumor in the thoracic vertebrae, about T3-T5 or even larger, which is in the mid-back, between the shoulder blades, right where my pains are centered. The tumor had started on the back of the T4, maybe, grown through it into the spinal canal, grew up and down to span multiple vertebrae, and is pressing on the spinal cord. That accounts for my symptoms.

We had already decided to irradiate a new tumor that had shown up in my abdominal muscles on the right side, where I’ve had a chronic problem with such growths (this is #6) due to leakage of ascitic fluid into the muscle tissue during/after my original diagnostic laparoscopy in 2004. The idea of using radiation is based on an emerging concept that it will be synergistic with my ongoing immunotherapy with Opdivo/Yervoy. So we added the thoracic tumor to that regimen. We finished 5 treatments of the abdominal tumor and are continuing to a total of 10 on the thoracic tumor. I have 4 to go, scheduled this week.

Meanwhile, I’ve developed chronic anemia and have had periodic transfusions of red blood cells over the past year. The frequency of this necessity has increased. So there is bleeding happening, and it’s likely coming from one or more of the large, malignant colon polyps that we’re already aware of, and that are inoperable (without a colonectomy). This last week I became extremely weak, and I ended up in the hospital for 2 days to have transfusions of 4 units of red blood cells. Previous transfusions were just 2 units and were done on an outpatient basis. In retrospect, my blood count was so low that I think I was in immediate danger of a cardiac event. I can tell that my systems are recovering, but I feel like I’ve been hit by a truck. Massive fatigue, and walking with a cane now. My weight is down to 159 pounds, which speaks to muscle atrophy.

I’m going to advocate for regulating my blood count at a higher level than the standard, because it’s clear to everyone that my system is more sensitive to low red cell count than most people’s. We’ll see how that turns out. For treatment, we will continue to just do transfusions until the frequency becomes something like weekly, if it does. At that point, we will consider intervention. I’m hoping that with recovery and better regulation, the bleeding will decrease.

Well, so there’s my medical update. Sorry if it’s too much information. Bottom line: My personal war against mesothelioma is getting tougher. But it’s been 20 years since onset, so I guess I can’t complain. By the way, I do think of it as a war. We fight on a strategic level with weapons like immunotherapy, but we also fight local battles with localized weapons like targeted radiation. As a patient, I have to have the will, the knowledge, the commitment and the resources (including a great medical team) to lead the fight. I’m the Supreme Commander, like Eisenhower, I suppose. And the generals, the medical folks, are the ones with the detailed knowledge and access to troops and weaponry who are helping to determine the strategy and engaging the enemy directly. We’ll keep up the fight, although there are dark moments when, I admit, I feel like quitting.

Enough of that bit.

Now the reflective part, and what it means to my friends around the world who are fighting mesothelioma and asbestos interests themselves.

Back in 2006, I spoke at an annual meeting of the Asbestos Disease Awareness Organization at Mt. Sinai Medical Center. My topic was “Ending Asbestos Poisoning: Global Advocacy from a Survivor’s View.” (Funny, I didn’t expect to survive anywhere close to this long!) I was asked by the editor of the American Journal of Industrial Medicine to turn the speech into a peer-reviewed article for the journal, and that happened. (I can say that I’ve been published in technical journals in aerospace research, energy research, and medicine!)

The article made the point that for many decades, asbestos industry forces expected victims to die fast and quiet, and that’s what happened. I’m not making that up. There is documentation of corporate executives deciding not to tell medically monitored employees that they had disease, but rather to use them for labor as long as possible and then just let them die. This strategy helped keep the lid on the truth about asbestos.

But things were changing in 2006. Patients were starting to live a bit longer than a few months or a few years. And patients, their families, and advocates were beginning to connect globally, via the internet. Remember, this was way before Facebook!

I felt that we were on the verge of a shift in the power structure of this asymmetrical war with asbestos interests. People weren’t dying as fast and quiet as before. We were becoming connected, so that we could pool our ideas, resources and actions. We had at our fingertips a vastly powerful tool in the internet, of which we were only seeing the beginning. And we held the moral high ground and still do.

As I mentioned, this is an asymmetrical war, meaning that we advocates do not have the financial or political power that the asbestos interests enjoy. But that doesn’t mean we can’t win. Remember Vietnam?

So I advocated adopting guerrilla warfare tactics. Co-opting the enemy’s resources. Utilizing hit-and-run strategies. Taking the long-term view that this is a battle for public opinion. Breaking the enemy’s will to fight. It would not be a quick war but would take years, maybe decades. Most of us would not survive to see the victory at the end. But the victory would come eventually. We would see asbestos trade banned globally. We would see improved treatments and means of prevention of disease. We would see the rights of victims preserved.

Here we are, a dozen years later. Back in those earlier times, other patients and their families were often referred to Michelle and me for advice and counseling. Those referrals would come from doctors and lawyers, generally. I have records of over 70 such encounters. But they became more infrequent over time.

I used to think that maybe Michelle and I had not done as good a job as we’d thought, and so referrals were shrinking. But tonight, thinking about one particular patient I’d talked with, I realized that this was not the case. Instead, the war has progressed, and we are winning.

This patient was a man in his 70s, who was being told that he needed chemotherapy to try to survive a bit longer. He was afraid of the loss of quality of life and was thinking of foregoing the treatment and letting nature take its course.

I assured him that I understood his conundrum, that he was the person in charge of his decision, and that no one else had a right to tell him what to do. I asked him what he had to live for. He responded: “My grandchildren.” So I asked if he felt that the possibility of more quality time with his grandchildren would be worth the suffering and risk of the chemo. After a little more back-and-forth, he suddenly said yes. It was clearly his decision, and it was just the chance to talk with someone else in the same boat that helped him get to it. I can’t say I felt good about his decision, because it was his decision and I had no stake in it, but I felt good that I’d helped him get there.

Then he said something about going to his next therapy appointment, and I asked him what he meant. He told me that he’d been seeing a “physician” who would hook him up by wires to a computer and run a program that said it was curing his mesothelioma! I was shocked. I assured him that, as a Caltech-educated engineer, I was certain that there was no such technology available on the planet. But he was insistent. He told me that he felt better after every session.

I was an amateur at this kind of counseling and still am. But I saw a clear ethical dilemma. In truth, I ought to be seeking to have the quack arrested by authorities. I was certain that other patients were being bilked as well. But I’d have to break the implied confidentiality and trust between this patient and myself.

“May I ask how much you pay for these sessions?” As I recall, it was about $300 each time.

“And do you feel that the cost is justified by how much you feel better?”

“Yes,” he replied.

I realized in that moment that I couldn’t own every problem in this arena, and I certainly couldn’t solve every one. Since this man felt that he was getting value, I let the issue go. It gnawed at me in the background ever since, although I knew it was the right decision at the time.

But here we are, in 2018. The quality and availability of information on real medical treatments is vastly improved. We are connected via the internet and a myriad of social media. The truth is pressing on the asbestos industry, causing it pain, just like this tumor is pressing on my spinal cord, keeping me awake and writing this. Canada finally shut down its one asbestos mine, overcoming decades of political pressure over a few hundred jobs.

We are winning the war. I don’t know how long it will take, but it will be years yet.

Here in the US, it will take a regime change to enact a ban on asbestos and to better ensure the rights of victims. Michelle and I were recently interviewed at great length by a well-known science and technology reporter, and I hope to see an airing of a special report on toxic chemicals that includes that interview. At the very end, he asked me what it would take to make the change, and I told him it would require a change of leadership in Washington. He asked me if I felt it could happen in my lifetime, and I surprised both him and myself by saying yes. He asked me why I felt that way, and I said it was because I felt that a resurgence of political awareness and commitment on the left, along with our enhanced ability to communicate, had a good chance of changing that very regime in the 2018 and 2020 elections. I hope to survive long enough to see it happen.

Thanks for allowing me to share my thoughts with you. I wish you well.

Paul Zygielbaum, ADAO Leadership