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CHAPTER 1
MY WAKE-UP CALL
"Action cures fear, inaction creates terror."
Douglas Horton
I was raised on a ranch, and from an early age adopted a pretty solid work ethic. I worked hard and played hard. I did not go directly to college after high school, opting instead for the Marine Corps. When I got out, I went to work on a drilling rig and worked at various other oil field jobs. When the price of oil dropped and the fields were shuttered, I went to work at a rock plant making little rocks out of big rocks, kind of like Fred Flintstone, operating various pieces of heavy equipment. About the time I had mastered every process at the quarry, there was a change of ownership, and I used that as an excuse to move on. I then went to work for a cable television company in the small community where I had grown up in the southern Sierra Nevada Mountains of California. I had moved from in-house with the cable company to subcontracting and was toiling along when my younger brother was killed in a car accident.
David, a pre-med student at the University of California, San Diego, was just about to turn 22, and then, in the blink of an eye, he was gone. I struggled tremendously with his death. Here was the person with whom I had spent almost every day, every holiday, and every event of my life. Sure, we fought, and as he got bigger than me he challenged me as all little brothers do. But it soon became apparent that if we continued down that route, someone was going to get seriously hurt, so we settled into a fantastic adult brother relationship. And now he was gone.
I struggled emotionally, eventually closing my contracting business and moving back in with my mom. I tried to find meaning in this tragedy, but there was only a vacuum. And then one day it occurred to me that even if I could not find meaning in my brother's death, I could use this tragedy to better myself in his memory and in his honor.
I started college and finished in less than four years, despite long hours spent participating in student government and speech and debate. At the end of my junior year, I was hired as a clerk in the state legislature. After finishing school, I went on to work for a total of 10 years in the legislature – first as clerk, then legislative assistant, and finally as committee consultant to the Assembly Health and Insurance Committees.
I left the legislature to work as a lobbyist for the California Medical Association (CMA). As a lobbyist for the CMA, I represented physician interests before the legislature by analyzing legislation and influencing the respective measures through meetings with legislators and staff, correspondence, and committee testimony in ways that were consistent with the perspective of physicians. I learned a lot about the modern practice of medicine from the physicians themselves, as well as the development of public policy in the health field. Little did I know that this experience with medical policy and physicians and the world of modern health care delivery would be valuable preparation for navigating the fight of my life.
After several years with the CMA, I struck out on my own, establishing my own contract-lobbying firm. I represented clients in the energy, automotive, and petroleum industries. I loved developing strategy for clients who faced threats from prospective legislation, and I loved the public policy development process. Because of my experience as a clerk, I knew the rules like few others, and because I had run campaigns along the way, I knew the politics. I really enjoyed creating client campaigns to influence legislation.
Before I knew it, I had been at it for 10 years. But years eight and nine were in the aftermath of the economic downturn, and client budgets were reduced, which meant that there was less money for things like lobbyists. About the same time, politics changed. Politics has always been a rough and tumble sport, but in my opinion, the political climate just seemed to get mean and nasty. Another factor that perhaps influenced this shift was that term limits, passed in 1990, finally swept all of the pre-term limits legislators out of office. Regardless of your perspective on term limits, an indisputable result was that there were a lot of new people, and many old relationships were now no longer relevant.
Representing clients before the legislature and state agencies was a stressful career to begin with, but these changes in the landscape made things more difficult and more stressful. There was a lot at stake. And the legislative process, at least in California, which is really a nation-state with an economy that ranks seventh in the world, is deadline driven with most bills being heard in long hearings at the deadline and the end of session consists of weeks of around the clock activity. After more than 20 years, I was used to it. But with the added stress of managing the business in the softened economic climate and having to work harder to build new relationships, I began having a hard time keeping up. It was initially most noticeable with my ice hockey team.
And then something terrible happened, which, in a book about fighting cancer, is saying a lot. As you will read later in Chapter 5, high-stress events can have an emotional impact that lodges in our subconscious and lays the groundwork for subsequent illness. The following event threatened my very livelihood and, as a result, adversely affected my subconscious. This subconscious impact very likely set off a chain of physical events that ultimately impacted my immune system's ability to function properly.
Every two-year session, lobbyists must take an ethics training class. I had been through them numerous times as a lobbyist, and before that, I had been through them as a legislative staffer. But this particular year, I waited until the last offering and then had a conflict when a client measure for which I had to appear and give testimony came up at a regional Air Resources Board meeting in Los Angeles (the ethics training was in Sacramento). There was no provision for make-up or remote attendance. I went with the client appearance and missed the training. I proactively attempted to make it up after, but was denied. Turns out the Secretary of State was a former state senator who I had tangled with in her committee during testimony on a very controversial bill, and she wasn't about to do me any favors. Within weeks, I was notified that my lobbyist registration was revoked, and a letter went around to all legislators and staff that a number of lobbyists were suspended for failure to attend ethics training. I wasn't the only one, but this was of little consolation.
Eventually I appealed, was allowed to remotely attend the training, and was reinstated as a lobbyist. But the highly visible, embarrassing experience in an industry where perception is reality, coupled with the timing, took a severe toll on me. I experienced extreme fatigue and gave up hockey all together. I stopped riding my mountain bike. I did continue playing golf, but my game sucked because I couldn't get out of my own head. I saw the doctor, and he took me through a lot of tests. When statins failed to control my high cholesterol and I began experiencing brittle fingernails and thinning hair, he sent me for an ultrasound of my thyroid.
The ultrasound showed that I had a nodule on my thyroid. The doctor said very little by way of background, other than that we would continue to monitor it. I did a little cursory research and found information on goiter, but the Internet had far less information available then than it does now. I just knew I didn't want a big growth bulging out of my neck! They measured it every three months for two years. All this time I didn't feel well, I didn't sleep well, and I was on an emotional roller coaster.
During this time, my wife's brother died of a heart attack at 52 years old. Her whole family was angry at his wife for not trying to do more for him during the attack, and they were blaming her. It was a very difficult time. As far as my condition, the doctor finally told me that we needed to wait until the nodule got to three centimeters. He tried putting me on thyroid hormone therapy, but it just made me feel weird, so I told him I didn't want to take it. I felt increasingly out of sorts, with fatigue, night sweats, and irritability. I found it very difficult to console my wife over her family difficulties as I struggled with my own physical and emotional challenges, and the relationship became strained.
Then my wife's brother-in-law was diagnosed with pancreatic cancer. I had golfed with him in February, and he had complained of unexplained back pain. When I saw him on St. Patrick's Day, he was jaundiced and looked like he had lost 40 pounds. It was just three months from his diagnosis until he passed away. My wife was overcome with grief, and her doctor prescribed pills for her anxiety and depression. Her father had died when she was seven and now, the two men who had acted as surrogates for her growing up were both dead. In addition to the pills, she was drinking more than usual.
My primary care physician had given me a number of scenarios up to this point about what might be going on with me, and most of them sounded like routine stuff. Just to be sure, the doctor ordered a scan. So, I presented myself to the radiology department, where I was given a gown that ties in the back and seated outside the advanced radiology rooms along a wall with 12 other scantily clad people, mostly women, who all looked a little pale and didn't even attempt small talk.
The clinic had overbooked the CT scanner worse than United Airlines, and I spent almost two hours waiting for my scan. The woman next to me had gotten up three or four times to check to see if her turn was close. Finally, she announced to no one in particular that she had to pick up her son from school because she had no one who could do it for her, so she left after having waited for two hours and had to be scanned another day. I felt really bad for her, but like everyone else in the hallway, I said nothing.
Two weeks after the scan, the doctor called and suggested that I make an appointment with another doctor for another procedure. The scan was inconclusive, the doctor said, but there appeared to be some atypical cells, so they wanted to poke the nodule and have a closer look at the cells. A pathologist poked me with a long needle, known as fine needle aspiration, and another couple weeks went by; I was starting to wonder what might be really going on. At the same time, I was feeling less energetic than my usual self, and promised myself that I was going to get to the gym and work out. And work seemed more stressful than ever. This was particularly difficult because I was not sleeping well, waking many times per night with night sweats.
Finally, my doctor called again and said that they weren't sure what to make of the atypical cells. They wanted me to go to another specialist, an endocrinologist. At this next appointment, the specialist reiterated that the cells were atypical and said that he wanted me to see a surgeon. Finally, I thought, someone is going to do something. The surgeon will just cut out the "atypical" cells and we can get back to normal, get life back on track.
The surgeon was a kind man from India, and he was accompanied by a young resident. He said that I had papillary carcinoma of the thyroid and that he wanted to remove my thyroid completely. I asked if complete removal was necessary, and he said yes, that was what was indicated because there was a very strong likelihood that once diseased, the organ would continue to produce malignancy. I asked when he was thinking about doing the surgery, and the resident said we should do it right away. I understood the sense of urgency she was trying to convey with her non-verbal emphasis, so I scheduled the surgery for two weeks out and drove home in a fog.
I felt like I had been punched in the gut. Numerous scenarios were discussed up to this point, but the word cancer had never been uttered. The surgeon wanted to schedule the surgery next week. Four doctors into this experience, and this was the first anyone had said anything about cancer. Why wouldn't they say the word?
The surgeon gave me an old, poorly photocopied list of resources, including the Cancer Society, the Thyroid Cancer Society, support groups, web links, etc. A million thoughts raced through my mind. My inner marine wanted to fight! But how? I didn't even know where to start. Even with all of my experience with the healthcare system and the fact that I knew hundreds of doctors, I felt anything but in control of my care. Instead, I felt more like a shuttlecock in a nightmarish game of badminton.
I researched the surgeon and found that he went to medical school in India. I thought about seeking another surgeon, someone trained in the United States. I thought, like most people, that doing something meant trying to choose the best doctors. But then I had a meeting with my intuition, which told me everything I needed to know: that this physician was highly skilled and possessed a kindness that obviated any concern over where he went to school.
As a kid on the ranch, I rode bulls in junior and high school rodeos. I participated in extreme sports like hang gliding and "jump, turn, or die" snow skiing. I climbed Mount Whitney. I was a marine. I had never known fear. Suddenly, I got a taste of raw fear. The thing about raw fear is that it isn't a single taste; it is accompanied by the mother of all esophageal reflux, which keeps bringing it up for another taste so that it is constantly with you.
The next week I was involved in a lobbying coalition that defeated a bill sponsored by a major car company that would have hurt my automotive aftermarket clients. It was a nice victory to experience right before the legislature broke for summer recess and I went under the knife, as they say. My close friends wondered how I was remaining so calm. I just said there wasn't much more you can do. I didn't tell them that the feeling I had when told I had cancer, that feeling of being punched in the gut, never went away, instead lingering as a constant reminder and accompanied by that fear reflux.
The surgery – a thyroidectomy and a lymph node dissection – went well, or so I was told. My wife was by my side for the overnight stay and tended to me thoughtfully. But through the haze of morphine, I was a little perturbed at the young nurse who, upon seeing my wife help me use the bedpan, asked if she was my daughter. This gave me the impression that I wasn't looking so good, since my wife was only four years younger than me. Nevertheless, in fairly short order, I was back home playing with my young kids and trying to regain strength.
Without a thyroid, my metabolism was off, which had all kinds of implications and would for several weeks, as they wanted me completely devoid of thyroid hormone for my first scan. Nonetheless, I had client comments due on the Cap and Trade measure, and a week after my surgery I wrote 24 pages of comments to the Air Resources Board. I was really proud of myself for mustering the fortitude to draft these detailed comments, and the effort had the effect of reassuring me that I still had my mental faculties as well as my fortitude and work ethic. It also didn't hurt that my clients thought I was a machine for delivering so soon after my surgery.
Two weeks after the surgery, I tried to attend a client board meeting and had a martini at the reception the first night, which was a huge mistake. I couldn't metabolize the alcohol, spent a miserable sleepless night, and drove home the next morning. For all of the bolstering effects of getting substantive, detailed comments written and submitted for my clients so soon after the surgery, this experience of a sleepless, restless night where I felt like a stranger in my own body took me in the opposite direction and left me wondering what my post-cancer future would look like.
Several weeks later, I was given a radioactive iodine pill and then scanned. Since the only organ in the body that takes up iodine is the thyroid, the scan showed to what extent any residual tissue remained. The pill would cause the residual tissue to decay, or ablate, as it was operated on by the retained radioactive iodine. The experience was a bit unnerving, as the physician entered a small room with the pill in a lead container and then exited very quickly after telling me to open the container and take the pill only after he cleared the room.
Because I was weeks out from having thyroid hormone, I felt like I was a 78 record being played at 45 (for those too young to know what that means, I was in slow motion). I had to be isolated for three days while radioactive. Neighbors and family members cooked for us and watched our kids; everyone was very helpful and loving.
Time passed. My healthcare providers assured us of an excellent prognosis and told us that papillary carcinoma is well understood, well differentiated, and generally responds well to treatment therapies. What my wife heard was, if you have to have cancer, it's the best kind. She was ready to get back to normal as if nothing had happened, and in fact, began to act as though it never happened. She didn't want to talk about it, and she certainly didn't want to mention anything about it in front of the kids. What I heard was, if my cancer didn't respond well, distal metastasis went to bones and lungs. I wanted recognition that I wasn't out of the woods yet.
(Continues…)
Excerpted from "Take Charge of Your Cancer"
by .
Copyright © 2019 Norman Plotkin.
Excerpted by permission of Morgan James Publishing.
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