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You Never Know: Twenty Years since Stage IV and Counting

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By Dennis Fried – Patient
Although it’s not the usual way of doing things, I’ll come to the moral of the story first: You never know.

When you’re healthy and everything is going well, the fact that you never know is not a comforting thought. We want to feel that we have a degree of control over keeping our lives tidy and safe. Of course, we adults (and especially we adults who read this publication) know that that is primarily a myth. And, ironically enough, it is just at those times when our lives are no longer tidy and safe that the fact that you never know can be a comfort.

Okay, back to the beginning.

On my fiftieth birthday, in 1996, I was diagnosed with stage IV CLL. This upset me no end because I had been hoping for a large-screen TV. It all transpired in the course of a single lousy day: routine colonoscopy in the morning, discovery of a massively enlarged spleen, x-rays, blood tests, visit to a hematologist, diagnosis (later confirmed by a bone marrow biopsy).

Yeah, I know what you’re thinking: How could I get so sick without knowing it?

At that stage (unfortunate pun) of my life, I didn’t go for routine physicals, and thus I never had a blood test that would have showed trouble. There were two reasons for this. When it came to medical matters, I believed that if you look for trouble you were bound to find it. And, as my father, a dentist, always said, “Doctors will kill you faster than the disease will.”

As for symptoms, there were few. A couple of mysterious bruises. A nosebleed, something I never get. Strangely troubled sleep, which I described to my wife as “haunted.” The need to eat even more than I already did to keep my weight even. And increasingly swollen glands in the groin area (but I had had swollen glands there since my teens, so why worry?). I felt fine, was working full-time, and running to stay in shape (something I’d been doing for twenty years). In fact, only a few months before my diagnosis, I raced a twenty-year-old co-worker in a 100-yard dash. (The whippersnapper beat me. I later used the diagnosis as the perfect excuse.)

A second opinion at a renowned cancer center confirmed the bad news. They did not have all the sophisticated genetic testing then that is available now, but what they did have pointed to a worse prognosis. When I pressed the specialist for my expiration date, he estimated “three to five years.” I was put on Fludarabine in the hope of a remission, which I was assured would be only temporary.

As they say, I was not a happy camper and I wasn’t even camping. My primary emotion was not fear or anger—it was frustration. Most problems in life offer an avenue of attack, something that can be done to try to help the situation. This seemed to be an exception. As I said at the time, if the doctor had told me that crawling from Florida to California would give me a chance of a cure, I’d immediately buy dozens of pairs of kneepads and gloves, and leave that night.

I did have one thing going for me: a very strong and disciplined will. After the initial shock, that will started to exert itself.  I was told I had to get a port to prepare for chemo. I refused. I knew ports were prone to infection, and during my “normal” life outside the doctor’s office I didn’t want any physical reminders of my situation. So I got stabbed anew every time I went for chemo.

I was told not to ride my bike or engage in rigorous physical activity because of my enlarged spleen. After a few weeks of indolence, I said “screw it” and got back on my bike and started playing tennis again.

In spite of my lifelong aversion to needing help from anyone, I decided to see a psychiatrist on the chance that it might help me deal with the illness. I summarized my situation to him in about ten minutes, he shook his head wisely and sympathetically, and then he said, “What you are dealing with is grief over your own life. So what we need to work on is grief therapy.”

I said, “No, what I need is life therapy,” and I never went back.

I got a prescription for anti-depressants. For someone who avoided even aspirin at almost all costs, this was quite a concession. But during that time I developed a saying that I resorted to many times over the succeeding years: Extraordinary circumstances call for extraordinary measures.

I read that attending a cancer support group helped a lot of people, so I decided to try one. (This for me was another extraordinary measure.) I’m sure that the dynamics of such groups vary considerably, but I found it an extremely depressing experience. I never went back there, either.

The plan that I was developing, seemingly without consciously constructing it, was to live as if there were nothing wrong. My doctor and chemo visits were the only unavoidable exceptions to this.

I did try visualizations a few times, willing the little good cells to attack the little bad cells. But this felt silly to me. Instead, I sometimes would close my eyes and marshal the inner strength I knew I had, steeling my resolve and determination to cure the incurable. I told people, “If the chemo can just get me close, I’ll do the rest.”

Every time the nurse hung the chemo bag I checked the label carefully to make sure I was getting the right drug at the right dose. At one point my counts were quite low so the doctor lowered the chemo dose for that week and said we’d return to the normal dose the following round in three weeks. The following round I checked the bag and saw the dose was still the lowered one. I told the nurse that the dose was supposed to be back to the original. She disagreed, looked again at the doctor’s orders, and told me I was wrong. I told her that she needed to call up to the doctor. She was quite annoyed with me but she made the call and found that I was right. You cannot be a passive subject once you’re forced to enter the medical battlefield. You are your own last line of defense against carelessness, oversights, and miscommunications.

Another time, during a chemo week (I got chemo five days in a row, and then three weeks off), I got sick with a fever and felt terrible. My white blood cell count was already low, so I knew my ability to fight off this illness was compromised. I called the doctor and he told me to continue coming in for the chemo. My intuition strongly disagreed, so I took a day off and returned two days later when I felt that I was recovering.

After almost a year on Fludarabine, I reached what I call “macroscopic remission.” That is, my blood counts were back in line, my spleen was back to normal size, and the nodes in my groin were no longer palpable. We didn’t do a bone marrow biopsy because the finding at that point would not trigger additional treatment. And I could “pretend” that I was cured, even though my doctor assured (warned?) me that the remission was temporary, hopefully for as long as a year.

I was then supposed to go in once a month for a CBC (complete blood check), to monitor for the disease’s return. I did this twice, and each time it felt to me like I was going before the firing squad, wondering if this time the guns were loaded. I decided I was not going to subject myself to that anymore. I stopped going. I was going to live as if the disease was never coming back. And I knew that if it did, I would eventually know it.

To go along with my determination to live as though nothing were wrong, I told very few people what I was dealing with: a couple of close friends, my coworkers, that was it. I even hid it from my widowed mom, who lives fifteen minutes from me. I saw no point in subjecting her to the stress and anguish before I absolutely had to. She still doesn’t know!

(When I started chemo I was assured that I would lose my hair. That’s a trauma in itself, but what bothered me most about it was that I would not be able to hide the truth from my mom any longer. Every time I took a shower I feared the appearance of that first big clump of hair on the drain. It never happened.)

Around that time my wife finally won a long-standing domestic “debate” and we got a two-month-old puppy. I had always loved dogs, in fact grew up with one, but as an adult I didn’t want the accompanying inconveniences and responsibilities. But this new little family member (we had no others) turned out to be a very important contributor to my mental health. Genevieve had to be fed and walked and trained and played with. She made me laugh, divided my attention in a wonderful way. She forced me to get out of bed on mornings when I otherwise wouldn’t have (by flying through the air and crashing onto the back of my head).

So, I returned to normal life, doing my best to ignore the CLL of Damocles swinging gently on a string above my head. The string broke almost three years later. I developed a head cold that refused to go away. I went to my family doctor and she diagnosed sinusitis. But that wasn’t all. She looked at my inner eye lids and my palms and said, “I can tell that you are very anemic.” I didn’t much like the sound of that.

Then she asked, “Can I feel your spleen?” She did, and my charade was over. The spleen was huge. Again.

She sent me right back up to the oncologist. Stage IV, revisited. My red cell counts were so low that the doctor ordered me to go right to the hospital to get two units of blood, because I was in danger of a heart attack or stroke. I refused. I could not admit to myself that I was that sick.

A week later, I admitted to myself that I was that sick (and I got tired of hearing my pulse pounding in my ears when I tried to sleep) and arranged for the transfusion. I drove myself to the hospital, parked in their garage, and walked probably a half-mile through the complex to the infusion room. When I announced who I was at the front desk, the nurse looked down at the paperwork and then back at me with a puzzled expression.

“How did you get up here?” she asked. I really did not understand the question.

“I walked,” was the truthful (and obvious) answer.

“Wow, when we saw your report with the blood counts we expected a very sick person in a wheelchair.”

As it turned out, they were right—except for the wheelchair. This little anecdote underlines something very important here, and that is the power of the mind to influence the body. And it works both ways. In his wonderful book Deep Survival: Who Lives, Who Dies, and Why, author Laurence Gonzales describes how people who get lost in the wilderness sometimes give up, lie down, and die within a day or two, far quicker than can be explained in physiological terms alone. The mind surrenders and the body follows.

This time around I received the newer drug rituximab for the better part of a year, and once again achieved a remission. And once again I was told that the remission would only be temporary and that it would probably be shorter in duration than the first one.

The remission has lasted for sixteen years and counting.

You never know.

I am not naïve enough to believe that I have discovered some secret way to beat this, or any other, disease. But I can share some of my beliefs and intuitions.

When the doctor gives you encouraging news, take it and run with it. When the news is not so encouraging, treat it like the weather report: maybe yes, maybe no.

Exercise is one of the best medicines that exist. Whatever form you choose, you have to get moving. And as you start to get fitter, you move a little longer and a little harder. I find it almost impossible to be worried or depressed when I’m in motion. After my second remission I again started training seriously on my bike and within a year I was one of the top age-group time-trialists in Florida, and I’m still at it today. I am convinced that vigorous exercise produces chemical changes in the body that fight disease. And more and more clinical studies are confirming this.

Dealing with the physical and mental aspects of serious illness is some of the hardest work there is. It’s draining, wearing, and exhausting. Sometimes you have to take a break from being strong in the ways that I’m suggesting here. Never feel guilty about taking a day “off,” whether that’s staying in bed, lying on the couch watching TV, crying, or having one (or two) too many. Just don’t let that kind of day become the norm.

I’m a vegetarian. I believe that eating animal flesh is unhealthy (and ethically indefensible). I’ve read many stories about people who have “beaten” various types of cancer, and becoming a vegetarian is a common theme in many of them. I think olive oil is one of the healthiest foods out there. Every night with dinner I have a large garden salad, doused with my own dressing of olive oil and vinegar. I don’t think that anybody other than children should drink milk, and other dairy should be consumed very moderately. Several nights a week I’ll have wine, or beer, or rum. Bottoms up!

If you have a healthy diet, I believe that supplements are a waste of money and can be harmful. I do take a daily multivitamin, vitamin D, and B12.

I think it’s important to have something in your life that you’re trying to get better at, or a long-range project that requires forward thinking. During my second chemo go-round, I had the idea for a book. (And that puppy that I hadn’t wanted was the inspiration!) My wife encouraged me to write it. My reply was, “I don’t even know if I’m going to be alive next month.” Her reply was, “Get off your ass and do it.”

So I did and it turned into a wonderful new career that continues to this day. The project was daily sustenance for me, something to look forward to each day, week, month.

Once again, from the book Deep Survival, comes this passage:

Psychologists who study survival say that people who are rule followers don’t do as well as those who are of independent mind and spirit. When a patient is told that he has six months to live, he has two choices: to accept the news and die, or to rebel and live. People who survive cancer in the face of such a diagnosis are notorious. The medical staff observes that they are “bad patients.” unruly, troublesome. They don’t follow directions. They question everything. They’re annoying. They’re survivors.

I discovered this book only a few years ago and it was quite amusing to see myself so accurately described there! We can’t change our basic personalities. But the lesson here is not to be an ornery pain in the butt just for the sake of it. It’s that, ultimately, we are in charge of our own bodies, health, and medical care, and we should not abdicate our responsibility to educate ourselves, ask probing questions, research data, evaluate options, and then choose our path and commit to it. The doctor is your consultant, not your boss.

Aside from the book already mentioned above, I would recommend two others: Radical Remission: Surviving Cancer Against All Odds, by Kelly A. Turner, and The China Study: The Most Comprehensive Study of Nutrition Ever Conducted, by T. Colin Campbell.

I wish you all courage, determination, and good fortune in whatever challenges lie ahead.


Dennis Fried holds an M.S. in physics and a Ph.D. in analytical philosophy, and has had careers in college education, software development, and sales and marketing. He claims (quite reasonably) to be the only person to have had both a philosophy article reprinted by Oxford University Press and a humor book published by a major New York City press. His hobbies include guitar, biking and swimming, foreign languages, and eating.

His books include Memoirs of a Papillon: The Canine Guide to Living with Humans without Going Mad, and A Tongue in the Sink: The Harrowing Adventures of a Baby Boomer Childhood. You can see a cute video from the Discovery Channel by going to youtube.com and searching for “A Day in the Life of Genevieve.” His email is symbolic418@gmail.com       

Originally published in The CLL Tribune Q4 2016.