How long do I have to do this!

When I first started trying to treat my CLL naturally, as a DIY project at home, I was still thinking in conventional medical terms. In my mid-forties, I was working towards a CURE, after which I could return to my NORMAL life. (Yes, I’m yelling; there was a lot of passion at that time.) My normal life was seductive, filled with coffee houses, chocolate cake, frozen Cokes, and frequent ice cream cones. I wasn’t fat or food obsessed, but that was my life and I liked it, thank you very much. I was also fond of not worrying about dying young and leaving my sons and husband behind. It was a very bleak time.

CLL as a DIY project. So after a long period of fear and self pity, I started working on my health. Initially, I felt that it was futile.  Locking the barn door after the horse was already stolen. Damage done. DNA ruined. Nothing I could do but watch and wait for the inevitable. I remember going to a local nutritionist/homeopathist who did one of the electronic tests and told me I had a yeast problem and that I needed to go on the yeast diet. This meant no sugar, no bread, no cookies, no frozen Cokes. All the goodies. I was a bit like an addict. I told her I could do it for 5 days, that was it. And I meant it. 

The Anti-Yeast Diet. I was true to my word and I stuck to this seemingly hideous diet for five miserable days. After that, I did, over time give up my precious frozen cokes and ice cream cones. I started buying organic cookies and slathered them with organic yogurt. Okay, I wasn’t there quite yet. The point is that I wanted an end game. And there really isn’t an end game.

The Macrobiotic Diet. Fast forward to 2005. After four years of a CLL diagnosis, my WBC had climbed to the low 20s, which at the time totally freaked me out. So after some research on the Internet, my husband and I packed our bags and drove to the Kushi Institute in western Massachusetts to learn macrobiotics. I was going to CURE myself with this diet, and then I could return to NORMAL. The macrobiotic diet was even more stringent than that hideous yeast diet. It consisted of beans, greens, brown rice and seaweed, with a weekly treat of white fish. It allowed for tempeh, tofu, sauerkraut and seasonings, one whole tablespoon a day of olive oil (no other fats) and lots and lots of kombucha tea. 

After one month of trying it at home prior to our Kushi visit, I lost about 10 pounds and my WBC had returned to 14, where it was at diagnosis. This is why I expected a CURE. I stuck to the healing diet for nearly two and a half years. I was extremely thin. I was waiting to improve those numbers, to get back to NORMAL so I could STOP. (Yes, I’m yelling again, because that’s how I truly felt.) But I didn’t get down to normal. In fact, I stopped the macrobiotic diet at two years and four months because my white count started once again to climb. Also, I was tested and found I had both osteopenia and osteoporosis. And anemia. It was time for a change. 

Reconfiguring my diet. So we got into the car once again, and this time drove to New York where I met with Dr. Kopelson (now deceased) of the Schachter Center (now closed) in Suffern, New York. I returned once again to taking supplements, something not allowed in macrobiotics. I also started juicing, and very slowly started adding eggs, chicken, and fruit. No more tofu or tempeh, yay! (I didn’t like them at all.) But once again, as I started up the supplements, I recall asking the doctor how long I had to do this! Because my goal was still to get CURED, and get back to NORMAL. (Yes, I’m yelling again.)

A (Very) Gradual Turnaround. So when was the big turnaround? When did I realize that this was it? That this WAS my normal? I don’t know. It was a gradual process. I didn’t start writing this blog until 2012, at the urging of my husband who felt that I had a lot to share. “But I’m not cured! I might still die of this and get everyone who reads this all depressed.” But my husband pointed out that it had already been 11 years, and that many newly diagnosed people would still appreciate my words (even if I were to keel over momentarily). Two major factors helped in the turnaround. One was finding out that I had to heal my gut. (Digestive issues had been a life-long problem.) The second was that I could no longer eat food cooked at high temperature. (Burnt food is a known carcinogen that immediate raises our white blood count.) All the efforts put into these two factors, along with my supplements and lifestyle choices, started to turn the course of my CLL markers. It wasn’t one major revelation, or one major pill. It was and still is a process, a continuing process.

The Secret Revealed. Some time after 2012, it finally occurred to me. I had to keep working on my diet and my lifestyle…indefinitely. That’s right. Just like the sign in my dentist’s office: only floss the teeth you want to keep. There you have it. There IS no cure, at least none that I’ve found. There is only management. You have to take the supplements, eat a healthy diet, get exercise and good sleep, drink clean water, breathe clean air, so long as you want to live. Once I got this in my noggin, my attitude changed. No more anxiety about getting cured (CURED!) by a certain date. No more figuring out how to reduce the number of supplements I take (I do take a boatload.) No more dreaming about bumpy cake. Nope. 

Grandchildren and Happiness. The tradeoff is that I no longer worry about my longevity. I’m fairly confident that if I follow the path I’m on that I will continue to be well enough to live my life. So far, I’ve been fortunate enough to see both my sons marry wonderful girls and to become the deliciously happen grandmother of six wonderful uniquely lovable grandchildren. Not too bad for giving up frozen cokes and ice cream. If I’d been given that choice in 2012, I would have been happy to take it.

Forget the Cure and Stay the Course! So if you’re working on a cure, please stop! Once your body has been a host to cancer, that potential is always there. It is your job to make your body as unpleasant for cancer as possible. This means… no sweets, minimal processed foods, minimal fruit, organic clean produce, wild caught fish, free range chicken and beef, and a good working immune system. In short, clean air, clean water, clean food, good nights’ sleep, and regular challenging exercise. Cancer feels unwelcome in such an environment. It is your job, every day, to maintain this inhospitality – and to keep living the good life – your own.