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CLL … And Life Goes On

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By Tom Bostock – Patient

Did you ever have one of those days when it just didn’t pay to get out of bed; one of those kiss the door, slam your wife, put your pants to bed and hang over the chair days? Mine started eight years ago, when a slightly elevated blood test result caused my primary care physician to refer me to a specialist, following prostate and skin cancer several years before.

Within less than a month, I was in a strange, almost antiseptic-looking examination room, shaking my head and blinking my eyes, trying to absorb what the hematologist had just told me.

“Your blood test results show that you have a form of cancer called leukemia,” he said, reading from the report in his hand with an almost matter of fact demeanor. “In your case, it is chronic lymphocytic leukemia, CLL for short.”

I went blank for a few seconds. Short for what? I asked myself, stunned. More importantly, what wasn’t he saying in his clipped, clinical presentation, with his manila folder, and sterile, white lab coat?” Suddenly, I didn’t like him at all!

If you have never been told that you have cancer, with a sort of matter-of-fact, clinical detachment, you can’t imagine what was going through my mind at the time. I had already survived a heart attack and both skin and prostate cancer years ago, but this one really blindsided me.

“I know this is a shock, but you need to listen to me very carefully,” he continued.  “At present, there is no cure for this chronic form of leukemia, but advancements are being made every day. The key to what I told you is that it is chronic. By chronic, I mean long-term. It isn’t anything that you need to worry about immediately; we will manage your disease together. If anything develops, we will treat it accordingly. It is a matter of ‘watch and wait.’ “

I was numb, listening to him drone on and on about the finer points of CLL. “Treatment depends on the stage of the disease. When it progresses to the point where chemotherapy may be indicated, there are several excellent drug cocktails.” I immediately pictured myself at some swanky party, sipping my medicine out of a cocktail glass with an olive sinking to the bottom of the glass.  I momentarily tuned him out, but he continued relentlessly.

“Remission is the goal and our initial treatment will actually be no treatment at all. Rather, I will be monitoring the disease through regular blood tests and physical exams, with specific emphasis on your lymph nodes, spleen and the possible occurrence of any persistent anemia.

“No treatment,” I echoed. I was confused.

He got up from the chair he had been sitting in while we spoke – he talked, I listened – and started towards the door. “I’ll be right back. I’m going to get you several pamphlets to read and discuss with your wife that will help you understand your disease.”

Suddenly, I had to ask the question that I dreaded the answer to, the elephant in the room, before he left. “You said that this disease is incurable. Then how much time do I have?”

The question seemed to take him by surprise, since I had tacitly accepted everything he had already said without question. He paused, as though trying to rehearse what he was going to say next.

“That’s difficult to say. It depends upon a lot of factors like age, general health, rate of progression, stage of the disease and willingness to follow doctors’ orders.”

“That’s not an answer, doctor,” I pressed. “I have a family to think about and possibly plans to be made. Forget the bull and the equivocations. Tell me the truth!” I think that he didn’t want to discourage or alarm me.

He looked at me with a strained expression. “Five to ten years.” He paused for a moment and then added firmly, “or more.” With that, he abruptly left me alone in the examination room.

My disease, how nice, I thought. What would this mean? How would it impact my family and my life? I continued to stare at nothing, wondering what came next.

The doctor returned a few minutes later with several colorful pamphlets containing charts, graphs and pictures of cells. “These will explain more about CLL in layman’s terms. Let me know if you have any questions. I will want to see you every four months from now on. Be sure to see Norma at the front desk before you leave. She will give you the form for blood tests to be performed two weeks before each appointment. If you need to sit for a few more minutes, that’s fine,” he said, as he again walked out of the exam room, this time softly closing the door.

Several minutes later, I stood at the reception desk while a pleasant, matronly, older lady with blue-tinged hair, processed my paperwork. “Be sure to go to the lab with an empty stomach,” she said. “Otherwise, it screws up the results and the doctor gets grumpy,” she added, conspiratorially. “You don’t want that and don’t forget to get a referral from your primary care doctor each time.”

“Okay, thanks,” I said. “I will.”

Grumpy doctors and CLL, what a combination, I thought, opening the door and stepping into the bright Florida sunlight. What’s next, lions, tigers and bears, oh my? At least I still had my somewhat warped sense of humor.

My wife is probably one of the most resilient people that I know. She also has a certain sense about things. Call it heightened intuition or psychic ability, I don’t know but whatever it is, it works for her. When I called and told her that I had cancer again, she said, “I don’t have a bad feeling. We’ll get through it.” Over the years, I had come to respect what I had come to know as her “feelings.”

When we moved out to California, the drive required us to cross the Golden Gate Bridge to San Francisco on a fog-shrouded evening. As I prepared to crest the top of the bridge, she suddenly told me to change to the outside lane. As I carefully maneuvered towards the rail, a disabled car suddenly came into view, without its warning lights flashing to warn other approaching vehicles. There would have been no way to stop in time if I had stayed in the inside lane. Chalk up another one for my wife’s apparent gift!

My first step towards confronting CLL, after recovering from the initial shock, reading the pamphlets and researching it online, was to locate and meet with a cancer dietician. Although I lived in Tampa, Florida, the expert I was looking for was located on the other coast, near Orlando.

The trip was both productive and rewarding. It wasn’t a diet he proposed but a total change in eating habits. “Diets come and go,” he said. “You will be betting your life on this one. This is not a diet but a change in your eating habits for the rest of your life.” That quickly put things into perspective. Having been a type 2, non-insulin dependent diabetic in the past, I was used to controlling what I ate, but this would be different … so different.

In addition to the sugared foods that I had already given up for the diabetes and later learned that cancer thrived on, as well as salt, the result of a heart attack I had suffered years earlier, his list included many other products and produce that I routinely took for granted as healthy and good for me. Gone were many starches, bread, wheat, gluten-containing products and even white vegetables like potatoes and white rice.

Beef, most red meats, and all dairy products were also forbidden. He explained that foods that contained GMO’s or artificially enhanced enzymes and additives should be avoided at all cost. Controlled amounts of chicken, turkey, lamb and certain fish, high in antioxidants, like wild-caught salmon, or farm raised salmon from New Zealand where fish are only fed their natural diets, were allowed.  Since cancer apparently thrived on my previous diet, I thought that things were about to radically change. Boy, did they ever!

Almost everyone loves toast and eggs in the morning and I was no exception. Since white, wheat and rye toast were now out of the question, we had to find a viable alternative. I tried several specialty breads, found in the refrigerated section of your grocery store that weighed a ton when consumed, and tasted nothing like real bread. It was a local health bakery, Sammi’s, that provided the answer with flax and millet substitutes. Yup, I eat bird seed bread! Have you ever seen those funny-looking treats hanging in bird cages? Millet! I actually do enjoy it now; in cinnamon, banana and a variety of other flavors. It even comes as bagels and dinner rolls.

My wife and I had been eating at the same restaurant for many years, every Sunday. What used to be taken for granted has become an interesting lesson in adaptation. In preparation for eating out, I boil my alkaline, ionized, purified water, make my decaffeinated green tea (no caffeine allowed) and pour it into my thermos for the trip to the restaurant. My wife warms up two to three slices of my millet/flax bread and puts them in a plastic bag, along with my non-dairy (approved) butter substitute. Older customers are used to my trappings, but I still get interesting looks when new patrons see me prepare my food, open my bags and pour my tea. Life used to be so easy.

I guess you could say that I have lived in four, then three and now two-month increments, agonizing between periodic, regularly scheduled blood test results. I learned that the normal white cell count of a healthy person is somewhere between 3 – 5 thousand; mine is now 234,000. It fluctuates. I told my wife that we should sell if it reaches 300,000. Not too long ago it was as low as 169,000.

Presently, my spleen and lymphatic system show no signs of infections despite the elevated white count and persistent anemia. Although I find hope in these small victories, chemo seems about to be rearing its ugly head. I have been given 3 months to show improvement in my red count or I will be receiving an interesting recommended cocktail: Fludara and Cytoxan; they sounded like a law firm to me.

Since CLL attacks your immune system, infection and susceptibility to common diseases is always a problem, not to mention a host of other possible cancers. I recently came down with pneumonia and it has taken almost 12 weeks to even begin to recover from it. It was a great way to lose fifteen pounds, but I don’t recommend it. My energy level was one of the first things affected. With my compromised immune system, I recently deactivated my real estate license to reduce contact with communicable diseases. I do, however, continue to remotely write articles for several online magazines.

I now realize that this battle against CLL is not going to be a sprint but rather a marathon and, like it or not, I’m already signed on for this long, bumpy ride. I have been with my hematologist for 8 years now. I appreciate his no-nonsense approach that isn’t couched in ‘medi-speak’ that obscures the condition and precludes and discourages possible questions. He calls it like he sees it and I can live with that. No question is unimportant to him.

There are still periods of momentary depression, but, fortunately, they are few and far between. Armed with the knowledge about what to expect, a wonderful, caring support group, both at home and through a local monthly volunteer cancer hospital program and the CLL Society, I prefer to think positively about this unforgiving disease called CLL.  Throughout the course of this life and death race, I will be concentrating on the quality and not just the quantity of my life. “Ah, but a man’s reach should exceed his grasp, or what’s a heaven for.” Robert Browning.

Tom Bostock is a freelance writer who contributes articles to Boomerz Magazine and Tampa Bay News and Lifestyles Magazine.

Originally published in The CLL Tribune Q4 2018.

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