Apologies for the gallows humor in the title, but it does rather suit my state of mind. Diabetes doesn't have quite the stature of cancer, and pre-diabetes even less so—more a storm in a tea cup— but it did give me an idea of what I would be like as a patient. Plus it opened the door to a wealth of information that would convince me that carbohydrates were the cause of the "diseases of civilization", the ones that frighten us the most—cancer, coronary heart disease, Alzheimer's.
As we sat in the waiting room of the infusion lab, the cheerful volunteer lady came around pushing her cart of snacks, asking if we'd like some saltine crackers or apple juice.
"Have you got any medical marijuana brownies in that cart?" Catherine asked her wryly from under her rakish fedora. The lady burst out laughing and a woman waiting with her sick husband looked around appreciatively. (Just about everyone we asked, who had been through chemo, said that they couldn't have gotten through it without marijuana. I suspect it's a huge underground movement, one the medical establishment has chosen to ignore.)
At lunch time when I asked Catherine if she'd like me to bring her anything, she asked for a grilled cheese sandwich. Then she ate it while sitting in the infusion chair. We marveled at what a difference her experience was this time and hoped the clear sailing would hold. Her oncologist had been pleased with how well she had tolerated the first round of this chemo. Everyone who had cared for her remembered the wretched time she had with the first chemo. It had even had an impact on my health as well. I had lost 12 lbs (down from 115). Adrenaline, I would learn, forced fat from your body plus we had been on a starvation diet for six weeks.
The week before Catherine's surgery I went in for blood work as follow-up to my annual physical. The results came back with the news that my blood sugars were worse and the doctor wanted to see me. When I picked up the message on my cell phone after my morning client, the lovely in-the-moment high I was enjoying crashed spectacularly. I was seething, the beautiful day forgotten. How could this be happening to me? I was fit and skinny. I felt like my inheritance had been taken away from me.
Luckily, I was headed to a friend's house. She hadn't had lunch yet. Was I hungry? I was hungry all right. I hadn't stopped being hungry since Catherine's chemo regime started two months ago and I had already eaten the sandwich I packed. I told my friend of my news about being pre-diabetic and now even more so — (6.0 on my A1C test up from 5.7 in six months. 6.5 was officially diabetes). She told me she was in the same boat with the diabetes/pre-diabetes thing.
This was such a serendipitous coincidence that my mood was immediately mollified. She offered me a pork chop with refried beans. I cheered up considerably and, after lunch, began to accept my new status.
I did not call my doctor; I had no intention of coming in. I had heard enough discussion with doctors in the last month that I couldn't bear the thought of it. Of being so clueless about what was happening and being talked down to in that way that doctors have when they assume you wouldn't understand anything technical and only want to give you orders based on facts that only they can confidently assert.
All my doctor could tell me, at my physical in November, was to avoid white foods. The year before she had told me my cholesterol was too high. I offered to give up ice cream. She also wanted me to eat less cheese. We ate vegetarian at home; if we gave up cheese, what would be left? Besides that would mean changing Catherine's diet as well. I gave up my egg for breakfast and replaced it with an English muffin. That turned out to be the wrong thing to do.
"I'd rather you had stayed with the egg," she had said. Now I was suspicious. Why did I have to care about cholesterol when it made things so much worse for my blood sugars?
"Don't eat white rice", she advised me, "especially Jasmine rice".
"So why do all the recipes call for Jasmine rice?" I asked her.
"Because it tastes good, " she said slightly exasperated. This was fast becoming the most ridiculous conversation I had had in a medical context, especially with a doctor who was so nicely plump, her long frizzy hair giving her the silhouette of a persian cat. Her Indian heritage called for loads of Jasmine rice as did mine.
"There's a higher incidence of diabetes in the Asian population now," she said as if that explained everything.
I'm only half Asian I wanted to say, but decided not to quibble. I liked Dr. V. I liked her quite a lot. She was only half Asian herself, had a white mother just like me. She and a colleague had opened a private practice so they could offer their patients much more than the five minutes the HMO system would allow. Catherine had found her and persuaded me to see her as well. That was over a decade ago. We had seen quite a lot of her lately and she had been so caring and helpful during this cancer ordeal of Catherine's. In fact I was feeling rather neglected, but I was damned if I was going to let her reprimand me for eating too much "white food".
I had turned to brown rice and replaced the English muffin with whole wheat bread. Then when Catherine was too sick to eat, Dr. V suggested white rice with broth. On days when she felt up to it, she sent me out for mac and cheese or pork fried rice. She ate just a little, so I ate the rest. I stopped cooking much, made a baked potato, at most, and veggie sausages (wheat based). I ate a lot of toast with marmite and English muffins because Catherine wanted them, but wouldn't eat them if they were a week old. I had no time to worry about feeding myself and I was hungry all the time. I was the human garbage can. I ate everything. The weeks I took her to the infusion lab every day, I packed sandwiches. It was painfully obvious to me why my blood work was worse. It was nearly all carbs.
The Friday that I got the news, I spent the evening on the internet reading about diabetes. A book was referenced—Dr. Bernstein's Diabetic Solution. By Saturday I had it from the library. My obsession had begun; similar to the cancer one that blots out every other interest because you've just been given a life threatening diagnosis.
The following Monday, on the day of Catherine's surgery, I called Dr. V's office from the hospital, to report that she had come through the surgery and was doing well. The receptionist, recognizing me, asked if I would like to schedule my appointment to see the doctor myself about the results of my blood work.
"No," I said, not even "no thank-you"; I was already mad again.
"But Dr. V wants you to come in," she said.
"Every time I come in the situation deteriorates," I said, which was as diplomatic a statement as I could muster. "So I'm going to do my own research," I declared having already gained confidence from Dr. Bernstein's story of being a medical outsider. (He had started his career as an engineer, but after discovering an improved treatment for his type 1 diabetes had become a doctor.)
"Can you hold a minute?" said the receptionist and put the nurse on. It took me 15 minutes to get around the nurse interviewing me, my cellphone warming in my hand. I assured her I was on the right track, I was cutting rice out altogether. She would report our discussion to my doctor, she said. When I got home there was a message saying the doctor had approved my not scheduling a visit. Smart doctor. I wouldn't have to fire her after all.
The Big Fat Lie
When I told Catherine how much I weighed now she, too, was stunned. She had guessed that I had lost 5 pounds max not 12. I had no intention of losing weight. Being thin was not the sort of attention I wanted. I designed my clothes to make me look bigger in the hopes of beefing up my presence, so to speak. And a skinny hug offered so little I felt naked and preferred padding. Plus I already had so little weight with which to pin my opponent to the floor in jujitsu. Soon I would be no match for even the 12 year olds.
I read the nutrition chart on the side of every cereal box in the house. I recorded everything I ate and added up my daily carb intake. But it wasn't until I got my own glucose meter that these numbers became meaningful. (My chiropractor, who turned out to be diabetic, after many years of keeping his levels down to pre-diabetic with this device, told me which one to get, and to order the test strips on e-bay where I'd get the best deal.)
"You're going to test your own blood?" said Catherine slightly horrified when I showed her my nifty pocket size kit. Even the nurse had thought a glucose meter was jumping the gun a bit since I wasn't officially diabetic.
"Yes, I'm the doctor now," I said defiantly. This was my idea of Do-It-Yourself authority. Obviously the medical establishment knew nothing about me, I told myself (not to mention my own ignorance). But with my handy truth-o-meter I would find out. Toast was definitely out I decided. It shot my readings up and toast was what I had been eating the most. So much for whole grain, I thought. It wasn't even a white food. Hah.
In Dr. Bernstein's book I read about the medical establishments misguided obsession with fat and cholesterol. That was the answer to my question. The doctors had it wrong. It was actually okay to eat saturated fat, even bacon because fat had no effect on cholesterol. It had just been a theory and no one had managed to prove that eating cholesterol or fat made your cholesterol higher. But did they give it up? No, for years more research money was thrown at it and when contrary evidence came up implicating carbohydrates was the problem, they chose to ignore it, said those results were too ambiguous. It conflicted too much with what had, for years, been taken as gospel.
Meanwhile, in response to public demand based on the fat-is-bad prophecy, all sorts of man made fats were put in food as substitutes, that could then be labeled as non-fat. Thus margarine. These trans fats even made food less likely to spoil, a plus for industry. The industry created fats would cause havoc in the body because the molecules were too big to be digested and bonded chaotically to proteins, creating large floating junk in the bloodstream—much more likely to cause heart attacks.
This was my introduction to The Big Fat Lie
as the science and health writer, Gary Taubes, put it. It took me three weeks of serious reading to get through his dense 600 page book Good Calorie, Bad Calories
, (460 actual pages, 140 pages of footnotes and index). Once I slogged through it, I had the science I needed, along with the story of bias in the medical hierarchy obfuscating the science and making Western medicine into a faith-based religion.
The Paleo diet people were right, humans were not meant to consume huge quantities of grain because we had evolved as hunter gatherers and agriculture was a mere 10,000 years old. Grains—carbohydrates, simple or not,—turned so quickly to sugar once in the stomach, that it raised blood sugar to toxic levels—hard on the kidney and liver to process. The body was smart though. It had a hormone, produced by the pancreas, to get rid of the sugar. This hormone, called insulin, was the heavyweight body guard that expelled blood sugars. It knocked at the door of muscles and the liver, and facilitated the transference of sugar to these tissues. Once satiated, the tissues refused to open the door and became "insulin resistant", but there was always the fat tissues, the last to turn Mr. Insulin away. And that is how carbs make people fat. Obviously not working for me, unless I was 15 lbs overweight and no one noticed. (This is actually a claim of researchers regarding Asian diabetics.)
Once I learned about insulin, I understood the adage I had been hearing from several sources that "sugar feeds cancer". This had even been explored on 60 minutes recently (on April Fools Day, heh) with that handsome Indian fellow Dr. Sanjay Gupta. Nearly a third of cancer cells, including breast cancer cells, have six or seven times more receptors for insulin. This means when the insulin body guard comes knocking he gets a good reception at the cancer cell hotel. Lots of sugar molecules are allowed into the cancer cell, a big party ensues and it grows and grows into a block party, a tumor, producing insulin of its own even.
Cancer cells are an ongoing mutation event in the body, what researchers now believe to be errors in the replication of DNA, but the body has ways of policing and getting rid of them. Excess insulin, as I could now see, doesn't help. In fact just the very presence of insulin, gets in the way of other hormones doing their work to regulate the body such as allowing fat to exit fat tissue and the brain to clear away amyloid protein, the build-up of which causes Alzheimer's.
Insulin levels could not be detected in the body until late in the game, long after the scientist, Ancel Keys, initiated a crusade to persuade the country that eating fat was the cause of an alarming increase in coronary heart disease. President Eisenhower had just had a heart attack, so must be true, reasoned the public.
During World War II, farmed meat wasn't available in some European countries and mortality rates there dropped which led Keys to believe that animal fat was the cause of heart disease. Sugar was also rationed, but that was overlooked. And not enough petrol for cars, so more people walked, but that was beside the point, at least his point. He was so convinced of the evils of fat that he didn't wait for the research to back his theory and his crusade. The thinking of his era, that he generated, was frozen in time by Senator George McGovern and his government campaign to create Dietary Goals for the nation. This, in turn, gave us the famous food pyramid and our current low fat, complex carbohydrate, government sanctioned diet!
Fighting Cancer: The Warfare Model
After reading this story I was convinced that the medical establishment would be the last to find a humane way to treat cancer, let alone find a real cure or learn how to detect it soon enough to reverse it. Western medicine was determined to do battle with cancer as though it were an invading enemy and not a part of the daily life of the body. Focused on warfare to obliterate cancer, such treatment would in turn kill off a lot of body function, not to mention grossly disfiguring it. So proud they were of saving lives, that it didn't even cross their minds that their approach was so barbaric that it nearly wasn't worth doing. Sure they said it was temporary, but not completely. They took your body, occupied it for close to a year and gave it back to you in worse condition. I would as soon have a tribe of cockatoos rent my house.
The following weekend, on my camping trip with 13 lesbians, I met a breast cancer survivor who had walked away from chemotherapy. Briahn was a friend of my long time friend Stacy, and was a practitioner of Chinese Medicine. When it came her turn to run the gauntlet of treatments for cancer, she opted for surgery and refused chemo. As it turned out she had the same aggressive triple negative cancer as Catherine had. Her oncologist warned her that it would be back within 18 months.
"Well, if it did, I would just do surgery again", she reasoned. Then she got herself a Chinese medicine doctor specializing in cancer, started on a regime of herbs, exercise and diet and had been cancer free for three years. Not quite long enough to prove herself cured, but still impressive. I envied her her confidence and good health. She was happy to share with me her story, but warned me that the medical establishment would fight such a decision every step of the way. I could see she was an inspiration to everyone who knew her story. Such examples were ignored by Western medicine, not even recorded.
Catherine's doctors told her that if there was a recurrence of this triple negative cancer there would be no cure. Her only option would be to do chemotherapy for the rest of her life. So even though she could very well be cancer free now, with the removal of her tumor, they could't know for sure. So it was best to obliterate any chance of a recurrence with 12 weeks of Taxol and likely more treatment after that.
Taxol had all sorts of debilitating side effects documented on the net by patients. Catherine made me read up on it; accounts of chronic joint pain, neuropathy (numbness) in the feet and hands and impaired cognitive ability; symptoms that hadn't gone away for years. It just made me angry. But Catherine was not one to risk walking away; she would do this regime because she had no other choice. The parallel universe of alternative medicine was used only to clean up the damage. We were lucky to have that much with acupuncture.
Catherine asked that we do a ceremony for the Yew tree from which the Taxol drug was obtained. I read up on it. The tree was a conifer from the Pacific Northwest. The drug was made from a substance under the bark of the tree. It had been discovered in the '80s. Scientists had nearly obliterated the tree population in their eagerness to harvest all they could for research. Now I felt sorry for the tree. (Later the drug was synthesized from cultivations grown for the purpose.) I had new appreciation for the forests of the Pacific Northwest and for forests in general for what cures to cancer that might be hidden within.
I walked around the neighborhood looking for yew bushes and clipped a few small boughs to represent the yew tree. In our ceremony we asked the Taxus Brevifolia to be gentle and effective. I acknowledged its plight as an endangered species and we thanked it for its contribution. I no longer felt angry and was on board for the treatment.
The drug made her incredibly fatigued after the first day and she slept day and night, but there was no pain and only slight nausea that came and went. We were so grateful for that. The second week, the oncologist dialed back the accompanying steroid and that gave her a little more energy. A little pain was creeping in and the usual chemo brain. He said it was in the first two weeks that we would know what level of pain she would have. So far so good. We also knew that these drugs were cumulative. She still had tinnitus, ringing of the ears, from Carboplatin in the first chemo regime.
A Diet Of One's Own
On a sunny day at high noon I took out the oven rack and put it in my extra large solar oven, over a cookie sheet. Then I proceeded to lay out a whole package of bacon in a nice row across the rack. (Uncured bacon so no nitrites.) Just doing so made me feel sinful—so deeply ingrained was the notion that this was heart attack food. I felt the same way about the heavy cream I began to use in the recipes I was learning from The Primal Blueprint Cookbook, part of the trendy Paleo way of eating; the book serendipitously introduced to me by a friend. It basically resurrected lots of hearty European foods—cabbage and sausages, pot roast, boiled chicken as well as favorites from Asia rich in coconut milk and lemon juice.
Both the heavy cream and bacon reminded me of England in an unexpected, deeply emotional way that I identified as grief. I was back in my grandmother's kitchen eating bacon for breakfast. I loved my grandmother and remembered how she cared for me. I had never smelled bacon cooking until visiting England that summer of my eighth year. But even more luscious was eating the bread dipped in hot bacon grease.
And cream teas with chocolate biscuits. What could be more English? My grandfather, by the way, lived until he was 94. (My grandmother had a head injury and dementia after that so didn't quite make it to her 90s.) This longevity was what made me skeptical of the health foods and fad diets of California. In adulthood I had never felt much enthusiasm for food one way or the other, and assumed I didn't care. I was a social eater, an assimilationist. I ate what people offered me in order to appear to be worldly. Now that I was on a fat-seeking food quest, I could eat such an array of subversive food. This new diet obsession made Catherine a little nervous.
"What is this food?", she asked, "you're eating like you're in Nova Scotia." This in response to the sardines I had laid on a pair of rye krisp crackers.
"Shall I make a veggie stir fry or do you want to eat the cabbage and Keilbasa sausage I made last night?" I asked. She opted for the cabbage dish, said she had developed a hankering for it.
Every new dish I made from the cookbook was equally well received. Catherine hadn't been able to cook since her illness. She had been the reigning foodie in the house. With this breakthrough I was the new chef in town. Hah.
Labels: cancer journey, diabetes, health, paleo, pre-diabetes