Tag: cll alternative health

CLL: My Personal 20th Anniversary

If pigs could fly…or maybe elephants. Here I am
with one of my six grandkids, having a grand time in the air via a pink elephant!

Celebrating My 20 Year Anniversary of CLL

I remember vividly when I was first diagnosed with CLL at age 46. It was July 2001, shortly before our national disaster. At the time, my brand-new oncologist told me that if I was lucky, I might even live for twenty years. Well, I guess I’m lucky, because here I am. And while CLL has definitely been a life-changing diagnosis, it has not been a quickly life-ending diagnosis, as I thought at the time. In 2001, chemo was the first line of action. And the research I looked up did not look promising. The researchers congratulated themselves on increasing survival time from 1 year to 18 months, calling that a fifty-percent improvement. Yikes! And the quality of life for those taking that chemo sure didn’t enhance those extra months, I’m sure. So, I was a terrified skeptic.

Of course, not everyone is dealt the same cards. Some people get their CLL diagnosis when they’re way beyond watch and wait (W&W). With impending threat to life, they ignore the stats and take their chances, and who can blame them! But from what I see on Facebook these days, there are a lot of us on W&W, and this gives us options. Better yet, it gives us time. Time to make a plan and to make changes. Better yet, there are many non-chemo treatments on the market today, some of them even advertised on TV. I’m glad they are available, and at the same time I’m grateful I don’t need that as yet.

To be honest, it took me a couple of years to stop feeling sorry for myself and get started on working on my health. I’ve learned a lot, met a lot of wonderful people, and in what I hope will be a short article I will share my experience.

Step 1: Learning about EDS

My husband and I talked with a stranger on a flight home from North Carolina (I’m in Michigan), and she told us about going to an alternative practitioner who did EDS, a form of electronic screening or testing to see what was wrong with you and what you needed to get well. Because of this conversation, I went to Ellen, a local nutritionist and alternative practitioner. I didn’t much like or believe in the testing. It was way too woo-woo for my taste. But she did suggest that I had a yeast problem, and further that I had to give up bread and all sugars (and my beloved Slurpees. (7Eleven’s frozen Cokes for those who are unaware). I obviously looked horrified as she said I should do that for a week and return.

Here’s where it gets dicey. She tested me again and said I took care of the yeast. Yes, in one week. But now she could see that I had parasites and needed some of her parasite killer bottles of supplements. I declined, and probably went home for a Slurpee. And a sandwich, and maybe a frozen fudge bar. But here’s the kicker. I had no idea that I would eventually be on a much stricter diet than suggested by Ellen. Today I am sugar-free, gluten-free, dairy-free, and worst of all…low oxalate. It’s a miracle I can find something to eat, but as I’m constantly watching my weight, I guess I’ve been able to meet that challenge. 😊

Step 2: Searching for a Cure

I went to various alternative doctors in Metro Detroit, looking for someone who could guide me to good health. Okay, let’s be honest, I was looking for a cure and willing to do just about anything to get there. None of these doctors provided that golden ticket, but one of them sold books in her waiting room. That was where I came across my first helpful book. I’m sorry but I don’t remember the title OR author, and can’t find it in my house. (My husband now uses books to prop things up on occasion, as I mostly read on my Kindle. If I come across it eventually, I will update this post at that time.) The point of this book was that you could ‘control’ cancer with diet and lifestyle. The start of the book recounted a sign in a wildlife park, “Don’t feed the animals,” the reason being the potato chips and twinkies were bad for their health…and therefore, what about us? To this point, at my hematologist’s word, I was still eating what I thought was a healthy diet. The fact that it included frozen Cokes and ice cream cones (quite regularly) hadn’t changed my opinion of my diet. This is where I started to make change.

Step 3: EMF Remediation

In late 2004, my husband was in the local library, reading a natural health magazine. There was an article about EMFs and it’s affect on health, as well as an ad for an EMF detector (gauss meter). We bought one. I started measuring. It turned out that our bedroom (in which we’d slept for 20 years) measured an average of 7mG (milligauss). The WHO (World Health Organization) at the time listed safe levels at anything under 2mG! We measured again with our electric meter box shut down in the basement. It didn’t have ANY effect on the milligauss reading in our bedroom! Creepier yet, the higher you held the Gauss Meter to the ceiling toward the back of the room (closest to the powerline, just about eight feet from our bedroom), the higher the reading. My husband and I didn’t sleep well that night and moved into a guest room.

Long story short, it took five months to remediate the issue. Detroit Edison (now DTE) did not take me seriously at first, but eventually revealed that they had an EMF department! That alone was no help. The EMF department’s goal was to make me feel like a fool. They didn’t talk about danger, but instead about my “comfort” level, like I was a lunatic. For the full story, see my other website, EMFDamage.com.

Step 4: Macrobiotics

 Despite my new and improved “anti-cancer diet” (my words), my WBC persisted in climbing. Keep in mind that I was now eating store-bought organic cookies topped with sweetened yogurt. I had a long way to go, but at least I was on the path. There wasn’t much encouragement on the Internet just yet. At the time, a Google search for “cure CLL” (or something like that) brought up a lot of depressing information about chemo treatments and life expectancy. Or, worse yet, end-of-life planning. So I went to the bookstore and started searching for books. I might have even bought some online. One favorite was, I Beat Cancer: 50 People Tell You How They Did It. That led to many other books about the Gerson diet, the Breuss cure, and others. But the one that stood out, spoke to me, if you will, was The Macrobiotic Way, by Michio Kushi, which led to a trip to Western Massachusetts, to the now-defunct Kushi Institute for a week of intensive study of the macrobiotic way, which includes diet, exercise, and lifestyle.

I was on the healing diet for nearly two and a half years. I saw the most improvement in the first month. But at the end of two years, my WBC started to climb back up. Worse yet, I was diagnosed with both anemia and osteoporosis/osteopenia. I started adding animal protein and smoothies to my diet. To this day, both the anemia and osteoporosis remain a challenge. Although I eventually left the diet, many of the principles remain. I eat mostly organic vegetables. I don’t cook at high heat. I don’t have white sugar or white noodles (or any noodles for that matter), I wield a large knife against my wooden cutting board in the kitchen. Even in non-Covid times, I rarely eat out, and buy a minimum of processed foods. I am mindful of my stress level and strive to be calm. My husband had noticed my change of personality. I’m no shrinking violet (I’m not shy!) but I rarely agonize about things over which I have zero control.

Step 5: Laetrile

While I don’t believe that vitamin B-17 (amygdalin, laetrile) is a magic bullet, I consider it to be one of the many pillars holding up my health. But in 2007, I didn’t take it lightly. I’d read Dr. Phillip Binzel’s book, Alive and Well: One Doctor’s Experience with Nutrition in the Treatment of Cancer Patients. This book gave the stories of patients of his that had survived cancer via (in his opinion) the use of B-17. I was thrilled to read that one of the patients had CLL. Like a detective, I tracked her down, and unfortunately, I was able to speak only to her husband as she’d recently passed away. Of course this was sad, and discouraging, but I spoke with her husband at length. He felt certain that her life had been prolonged by Dr. Binzel and his protocol. He also admitted that while his wife took the B-17 and even had it via IV treatment, she found it hard to stick to the diet. Given their experience, I felt this was worth pursuing. Time for another road trip.

My husband and I drove east again, this time to Suffern, New York, to the Schachter Center, where we met with Dr. Jeffrey Kopelson. I’m sorry to say that he died several years ago, suddenly, from a heart attack. While I wanted to have B-17 via IV treatment, he advised against it, as it requires many visits and would have been useless during our three-day stay. Instead, he advised taking 500 mg, 3X/day, starting with one pill a day and working my way up to the full dose. I’ve been taking it ever since, and order mostly from TJSupply.com. I’ve heard good things about ApricotPower as well. Read more HERE about how Laetrile works.

Step 6: Ultraviolet Blood Irradiation

This was probably my most exotic treatment to date. I found a doctor about an hour and half away, near my alma mater, Michigan State University, in East Lansing. At first, I went three times a week, then two, then once a week, then every other. The process is that a technician inserts an IV needle and withdraws a pint of blood into a glass container. Your blood is then returned to your body, via that same IV, once it’s gone through an ultraviolet light machine they have for this purpose. It was painless (except for the first poke) and relaxing, and I met many other interesting cancer patients. I eventually stopped after examining my lab chart. I keep my own spreadsheet. I determined that while I was no worse, I was no better. It wasn’t worth the time and expense. This was my experience, and I know that this works well for other people. So please don’t be discouraged if you’re considering IVBI therapy. It’s definitely worth a try.

Step 7: Patient Heal Thyself

One thing I learned about going for the IVBI treatment was that I didn’t have to go to my hematologist for blood work. As I was so frequently going to E. Lansing, where they were drawing blood anyway, I’d gotten into the habit of getting my CBCs done there. It was so much less stressful than a trip to the hematologist where you had to see the people getting chemo while you waited for your blood draw. I used to dread those visits.

But it was a nuisance to go all the way to East Lansing. My son, then a nutritionist, suggested that I use DirectLabs. You go online and order up your tests. The cost is out of pocket, of course, but not much more than the copays I had at the time. You receive a voucher and locate a participating blood draw location. Today I use Quest locations but have used Labcorp in the past. Your results are emailed directly to you. I don’t recommend this if you’re not familiar with reading your own lab results. Or if you feel the need and reassurance of a medical professional. I do a mixture of both. I see a doctor once a year, and get blood draws every three months. It’s been working for me. I don’t like to be surprised and this keeps me in tune to what’s happening with my body as I continue with my diet and with often changing up supplements. It’s a good idea to check with your doctor to make certain that this is a good plan for you.

Step 8: Living with CLL

There are many with CLL who have reported that they have been totally healed from CLL via natural means. I’ve spoken with three of them, all men. I’ve read about two more. This is wonderful and an inspiration to all of us. It can be done! There is a path, but it is our job to find it. Unfortunately, this has not been my experience. I still most definitely have the diagnosis of CLL. Every blood test proves it.

However, and this is a big however, in some ways it doesn’t matter. I’ve changed up my lifestyle and my diet. I’m ever watchful of my lab work. I eat virtually zero processed foods and nothing (zip,zero,nada) foods made with white sugar. Ever. It’s not even that big of a challenge anymore. It’s just the way I live. But while I’ve been working on this, wonderful things have happened.  I’m still here and living my life. I’m still working. I’m still writing and even drawing and illustrating these days. Best of all, I’m still here with my husband and two sons and their families. And as you’ve probably seen, we’ve had six little additions to the family over the last eight years. Six grandchildren! Such an unbelievable blessing! I am grateful every day. If anything has been worth all the work, and all the work to come, it would be this.

Step 9: Sharing

I really left out a step. I believe that it was in 2011 that I started my web site, CLLAlternatives.com. I was worried that I would depress the hell out of people if I died and therefore stopped writing. But it’s been nine years since then, and here I am. Sharing has enabled me to meet and enjoy the friendship of countless CLL Buddies. I keep in touch with people from Ann Arbor (45 minutes away) to London, Spain, Canada, Washington, D.C., New York, California and Florida. There are so many more! Some of these contacts have been fleeting. Many of you I consider to be friends. We are all bound by this terrible and shocking diagnosis that turns into something we can live with. I truly love you all!

As usual, I’m thinking of many more things I could say, but this is long enough. I hope you are inspired to keep on keeping on. Keep up your diet, your lifestyle. Keep testing out supplements and make changes as your health dictates.  Check in with your doctor, but also remember that you are the final decision maker of your own health.

Wishing you all the best of health and happiness! – Denise

CLL DIY treatment

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. 

CLL Alternatives Gets Updated Look

I’ve been working on CLLAlternatives since November 2010, and I thought it was time for an updated look! The man you see picture with me is my husband, Peter. I’m sure I’ve mentioned him here and there. But I should mention him a lot. He has been my partner in wellness since I was diagnosed in 2001. He wakes up early to set up our home made chicken soup, sauerkraut, dehydrated kale chips (yum!) and more. Whatever diet restrictions I’ve had over the years (and they have been compounding lately), he sticks to it with me, at least during meals. Let’s just say I really appreciate everything he does. For some weird reason, it seems he wants to keep me alive.

The picture you see was taken by a volunteer at the Marietta Museum of Art and Whimsy, in Sarasota, which I highly recommend if you enjoy smiling. We visited last December. It is, of course, closed at this time because of the pandemic. But this, too, will pass. If you find yourself on the gulf coast, try to make time to go there!

In addition to the site, I’d like to update you on my health. I generally have blood tests every three months. Because of the COVID-19 pandemic, I delayed until just last week for seven full months. While I kept to my diet and supplements, I have to say i was just a little nervous about the results. Fortunately, they weren’t so bad. While I’d always be thrilled to find out that I’ve finally reached full remission (smiley face here), I was pleased to see that I’m still bobbing along in my low 20s WBC. I would prefer the mid-teens, but after all the stress and worry of the pandemic (which is still ongoing!)I think I’m doing okay.

I did put on a few pounds while working from home, despite all efforts. It’s just too easy to migrate over to the kitchen when you’re getting up from the computer. I did manage to take them off with a concentrated effort to STOP EATING sunflower seed butter and rice cakes. Also to cut down on the amount of nuts and fruit that I eat. Yes, you can gain weight eating healthy food. I just proved it! : )

As always, I will TRY to post more often. I hope this format makes it more clear when it was the last time that I posted. A recent and new reader emailed me to ask if I was still walking the planet because she thought I hadn’t posted for a year or so. The last post was March 2020. So while no one is going to accuse me of posting too often, I do try to check in now and then. I did promise a book, but… all the Google and Amazon and Facebook censorship of all things natural health has been really discouraging. I don’t know if you are aware of the NY Times author whose COVID-19 book was taken off Amazon because it wasn’t conventional enough for the Amazon censors. To be fair, it’s up there now, but only because this author has clout. He’s a best seller. Go ahead and buy his book, just to show Amazon what’s what!

Please write and let me know what you think of the new format. Please forgive me for the lack of a book. (I have written a LOT so far, but compiling it all into a book, not so much just yet.) Please let me know if there is a topic of interest that I can post on this site. We have a much better chance of that happening.

I hope this post finds you hanging in there and doing well. I really care about each and every one of you. We are unfortunately bound in a sense of understanding each other because of this CLL thing we’re all dealing with. I wish you good health. I wish you happiness. I wish you peace. – Denise

CLL & COVID-19: What to Do!


Denise with three of her six grandkids. No, I’m not able to be with them now. Yes, I miss them!

I’m always dishing out advise, so I will share my take on CLL and COVID-19 here. If you have the CLL diagnosis, be careful! I’m not sure we have the immune system to fight off COVID-19. I read one CLL doctor’s recommendation to get IGIV (immunoglobulin by IV) if you get sick, to build your immunity and prevent pneumonia. So keep that in mind to ask your doctor should you come in contact with this virus. I personally do not go in for vaccinations, as I believe they further stress our immune systems…however, get this information from your doctor and make your own choice. This is serious, life-threatening business, and we’re all in it for the long haul.

So what have I been doing? As of last Friday, I’ve been working at home. It feels like I’m hiding out, although I do call girlfriends, and I have nearly constant contact with the people at work. That said, I still feel isolated. I’m not confident about seeing my grandkids (there are six of them now, and I miss them!). Yesterday evening, the president indicated this could last till August, maybe July. OMG! I know I have it easier because I have the house to myself and don’t have to amuse or entertain children. We have heat and electricity, running water with a working hot-water tank, and natural gas. So far, we’ve been able to stock up on the basics. I won’t go into crowded supermarkets, but there is a local health-food store that has groceries, and I wear my gloves and go in and out quickly. There are no more restaurants, no more sporting events, our synagogue closed, schools shut down. Like everyone else, I hate this!

I’ve been ordering my supplements and stocking up on my most important items. I need my Peak Immune and my D’mannose (prevents UTIs). Yes, we have enough toilet paper. LOL My husband always shops for our home and business like a hoarder, and he bought a huge supply about a week prior to the rush, just because. We are a little low on tissues, because apparently hubby shops like the rest of the country and finds TP to be the biggest necessity.

At work, one person called in sick and another came in sick! This is a particularly vexing situation, and world-wide at that. It hit home Monday when one of our newest and youngest employees showed up to work, sick with fever and cough. (Honestly!) This despite two company-wide personal-distance meetings where all were told to stay home WITH PAY. All employees were also given printed materials stating the same. He was tested for COVID-19 yesterday. Our business is 90% shut down; it is a small business with about 25 employees. We’re waiting for his results. 

All that said, I prefer to remain optimistic. This situation will not go on forever. When the weather complies, we all can gather outdoors. In Michigan, that won’t be till April, and sometimes true spring doesn’t arrive till May. But the point is that this is temporary. 

What can we all do? Do you need the official list again? I’ve added a few thoughts of my own.

Stay home, if at all possible. I’ve been able to get my work done from home, so far. Avoid young children, unless you live with them and can’t help it. 

Wash hands frequently. Yes, I know that most people have heard this one ad nauseum. I use lukewarm water and mild soap, so as not to make my hands dry and cracked and vulnerable to germs. Remember also to moisturize your hands frequently. I like coconut oil because its soothing and it kills germs. Also O’keefe’s Working Hands is in all drugstores and is recommended by EWG.org (Environmental Working Group). 

Clean your doorknobs and other surfaces. I use peroxide or vinegar, either sprayed or applied to paper towel and wiped. (Mostly peroxide, as it doesn’t stink.) I’ve started doing this every day. Every. Day. (Getting tired of it, but still a good idea.) Clean your car interior, light switches, faucets, handles, everything you regularly touch.

Wear gloves if you go into public to shop. I wear those cheap stretchy gloves from the dollar store and wash them frequently. It’s less crazy looking and more comfortable than vinyl. It’s also still cold where I live, so not a bad plan. 

Cough into your elbow.

Bow vs Elbow Bump. According to my alternative doctor, do not elbow bump in greeting if you’re also sneezing into your elbow. Instead, he suggests a Japanese bow, from a distance. If you do get an unavoidable hand shake, wash your hands ASAP immediately after, or use hand sanitizer. (I prefer soap and water.) If you can’t wash or sanitize, keep your hands away from your face until you can!

Get enough sleep. Sleep restores your immune system. I often feel better in the morning no matter what’s going on, so long as I’ve had a good night’s sleep.

Take extra supplements. Zinc tablets. Peak Immune by Daiwa. Garlic pills (odorless, if you prefer). Elderberry (all sold out now, everywhere, but keep checking). Dr. Oz recommends Beta Glucan at 250 mg. There is also Echinacea, Oil of Oregano, and Licorice.

Chicken broth. Yes, mama’s traditional chicken soup is good for the soul – and for the immune system. Home made from organic free-range chicken is best. Simply put chicken in pot with carrots and celery, and maybe some parsnips. Add filtered water, just enough to cover all chicken and veggies. Add sea salt, bring to gentle boil. Once boiling, or nearly-boiling, cover and reduce to simmer for several hours. This makes DELICIOUS chicken and excellent soup. Sally Fallon of the Westin Price Foundation wrote an entire book about the health benefits of chicken soup. 

Meditate. My personal meditation is reading or writing, and sometimes sketching. Anything that gets your brain off COVID-19 or any other worry. Anything that makes you lose track of time. 

Air out your house. If It’s warm enough, and even if it isn’t…open your windows once or twice a day and let the fresh air in! A good air exchange can help rid your home of some of the pathogens.

Remove your shoes when you come in from the outdoors, particularly if you went to a market. Wear slippers inside, or go around in your stocking feet. No need to potentially track in dirt and possible germs.

Change your pillowcases daily. Or every-other day, if you prefer. This might involve more laundry, but this is where your face spends seven to nine hours each night. Keep it clean!

Know we will get through this. Engage in positive belief. We are a strong country and we will prevail. After that thought, we all need to take care of ourselves and our loved ones.

If you have more ideas on how to be safe, please share in the comments!

As always, wishing you the best of health! 

CLL and Intermittent Fasting

Denise and two of “her boys.”

Intermittent fasting has become quite the craze. Google it and you will see countless pages, including many youtube.com videos touting its safety and effectiveness. I agree…to a point. It turns out I’ve been intermittent fasting for years – but didn’t realize it. Does that sound crazy? Let me explain.

Before I started a truly healthy non-SAD (standard American diet), I would be ravenous for breakfast. I remember standing in the shower with true stomach PAIN gripping my being. I would speed dress and run to the kitchen for relief. Yes, relief. I wasn’t just hungry; I was crazy hungry. I believe the reason was sugar, and probably gluten. My standard breakfast at the time was a bowl or two of cereal, sometimes topped with bananas. At the time, I thought it was a pretty darn healthy diet.

Cut out the sugar and enjoy your morning calm. It wasn’t until I read Beating Cancer with Nutrition by Patrick Quillin and started cutting out most processed foods that I felt a difference. This difference became even more pronounced when I went on the Macrobiotic diet as taught by the now-defunct Kushi Institute in Becket, Massachusetts. At the Institute, they had morning exercises prior to breakfast. Before my Quillin-inspired diet, and the fare I was eating at the Institute, there was no way I could have made it through exercise class. I would have hopped in my car in a mad search for a restaurant or a supermarket. But I felt the change. Waiting was no problem, and neither were the gentle stretches and exercise. I’d already begun my Intermittent fasting; I just had no idea that was what I was doing. This was 2005.

I’m already intermittent fasting! In fact, it wasn’t until I recently (this is September 2018) listened to a Nasha Winters youtube.com video that I realized I’m an Intermittent faster! Dr. Winters said that fasting for a mere thirteen hours was enough to prevent breast cancer. Thirteen hours! I generally fast for fifteen! I will explain.

The hours of fasting include sleep. For me, this is about seven hours on a good night. The rule is to not recline or go to bed for at least three hours after eating. No problem. I’m usually done eating by 7:00 pm, and rarely make it to bed by 10:00 pm (even though that’s my target bedtime). Even if I set the clock for 6:00 am, which I generally do, I’m rarely out of the house till 9:00 or 9:30 am, and I let myself have my morning smoothie at 10:00 am or later, when I’m at my desk, ready to work. (I often have some sauerkraut or pickles at about 8:00 am, and a cup of bone broth soup at around 9:00 am. According to the experts, these “treats” don’t count. If you haven’t had sugar or carbs, you are still in IF.) The last time I checked, 7:00 pm till 10:00 am is fifteen hours. And I often go longer than that. Without any struggling.

Is this the reason for my continued good health? The point is that I’m doing well, or at least well enough. I’m seventeen years into this CLL gig, and my numbers are similar to what they were at diagnosis. (Please note: I still most definitely would be diagnosed with CLL if I went to any doctor for the first time. I’m NOT cured, but I certainly am a well and healthy human being!)  The short answer to this question is: yes, but. Yes, it is part of why I’m doing well, but it is most certainly not the only reason. There are also the large issues of diet, supplementation, exercise, sleep, clean water and air, and the general avoidance of toxins.

So how does IF work? Yes, this is an important question. Our bodies are complex and busy machines. We all know that we heal best overnight. When we’ve suffered a cut or minor injury, we often find it at least partially healed in the morning. When we have the flu or other minor illness, there is nothing quite like a good night’s sleep to help us recover. Our bodies are designed to heal. When we are at rest, our internal machinery is busy at work, our immune systems on high alert, clearing out the toxins we’ve come across, kicking out the pathogens (germs), rebuilding damaged tissue, and so on. While it’s not a cure for CLL, it is certainly one of your major pillars of health. It’s a wonderful system, but there is a hitch.

If we’re loaded up with food, the body must divert its energy and attention to plain old garden variety digestion. What a waste of energy and time! This is why it’s vital to stop eating a good three hours or more before bedtime. Your digestive system will have had plenty of time to work on its latest load of nutrients, giving the immune and reparative systems what they need to help heal your body. It’s a beautiful system. Don’t muck it up with late-night snacks.  Water or herbal tea is fine. Stay away from caffeine; your body doesn’t do this repair function nearly as well when you are awake.

Intermittent Fasting Side Effects. It’s all good. IF can improve your heart health, suppress inflammation, fight free radical damage, and more. In general, it’s just plain good for your overall health. While many use this method of eating to lose weight, that has not been my experience. Read more about IF in this article by Dr. Joseph Mercola.

Check out your eating schedule. If you’re already cut out the sugar and glutens, chances are you’re not starved all the time, and eating day and night. You might already be intermittent fasting. It might be that you’re close, but still eating a late-night snack. It’s hard to make those changes. But now that you know about the mechanism of self-repair and healing, perhaps you’ll find it worth your while to try.

[Please note: my husband (who I adore) pushes himself and pushes me to be my best. He nagged me (sorry, but that’s the most accurate word) to keep my hours between 5:00 or 6:00 pm at the latest and 11:00 am or 12:00 noon at the earliest. When I tried to meet this eating schedule I developed stomach issues. To be specific, stomach pain while sleeping that kept me up many nights. It turned out, on self-reflection, that I was rushing through dinner to get enough ‘fasting’ hours in. And I was famished by 11:30 am and didn’t eat slowly or mindfully.  In other words, I was stuffing my face, quickly, all during my ‘feasting’ hours, and it was hurting my health.]

Pay attention to your body. Maybe thirteen hours is your limit. Maybe twelve. The important thing is to go to bed on an empty stomach, and then to delay breakfast for as long as reasonably comfortable.

 

PS: If you wonder why I always post photos of my grandchildren…it’s because when first diagnosed I really didn’t believe I’d live to see weddings, let alone grandchildren. It’s a joy in my life and I’m grateful for my extra years. I wish them for you as well!

 

CLL: How to Eat

living well with cll
Living well with CLL! The author (in red) and some of the family, 4th of July 2018.

Please notice that the name of this article is not ‘what’ to eat, but how. We all think we know how to eat. After all, we’ve been doing this since birth. But sometimes we need a reminder. Let’s start with a scientific fact. Our immune system is strongly related to our gut, also known as our digestive system. Of course, it matters what you put into that system, that is more than true. But as someone who has struggled with digestive problems pretty much her whole life (at least as much of it that I can recall), there is much more to it than the food.

To explain, let me share my Macrobiotic experience. I was diagnosed at stage zero in 2001. In 2005, I was getting increasingly alarmed at my deteriorating blood markers. My platelets were low. My white count was high, and my hemoglobin and red blood count were also worrying. My husband and I did our due diligence and research, and we came up with Macrobiotics. I went to the book store and loaded up on several Macrobiotic texts and cookbooks. We also decided to make a trip over Labor Day to the Kushi Institute in Beckett, Massachusetts, for a week-long class. I believe it was called The Way to Health. (Please note, while I still eat an organic, whole food, mostly cooked-from-scratch diet, I am no longer technically Macrobiotic. Also, the Kushi Institute still has a web site, but they no longer offer the resident classes.)

The first thing I noticed was how the residents were skeletal thin. And many were missing teeth, which was concerning. But I was fighting leukemia here, and if I had to get thin and lose a few teeth in the process, well, that would be the breaks. As it turns out, I did suffer some gum recession and was about twenty pounds thinner than I am these days, but still it was absolutely worth the experience. I learned so much.

One of the first things I learned was to chew my food thoroughly. To count how many times you chewed, chewing until the food in your mouth was liquid — or as close to liquid as possible. To me, this sounded disgusting. But honestly, there is wisdom in this practice. The more work you consciously put into chewing, the less work your digestive system has in order to process your intake each day. When you chew, saliva mixes with your mouthful, adding digestive enzymes to the mix. Yes, those pills you buy in little bottles are naturally available if you just chew, chew, chew.

I’ve recently gone through a spate of serious stomach aches. I’m talking abdominal pain for a 36 hour stretch. Go to bed with a stomach ache and wake up with the same dull ache emanating somewhere from the left side of my waistline and radiating out to other regions of the digestive tract. I felt hunger but was afraid to eat. My husband was out of town on a business trip. I took to the Internet and looked up stomach pain and CLL, learned that it could be related. Of course, this led to a night of insomnia, keeping me from healing. I’m a strong person, but I sometimes also feel the fear.

When my husband came home, I shared my fears. He reminded me about the chewing. It’s so easy to forget. I started out by making myself meals of vegetable miso soup for breakfast, and chicken soup and rice (home made from the freezer, of course) for lunch. For dinner I had a smoothie. Everything I ate was either stewed or mush. Nothing required much chewing, but I chewed nonetheless. I feel better now, back on my regular diet, and I’m obviously very relieved. I was worried it could be the CLL, or my diverticulosis (or diverticulitis) kicking up. I was worried I might end up in the hospital where they would start running invasive tests and wearing down my immune system. (Conventional medicine saves lives, but you must be a careful and cautious consumer!)

But please take note that my main suggestion here is to chew your food well. Sit down when you eat and focus on enjoying your meal. Put a reasonably-sized helping of whatever you’re eating on your plate. Take a look at your plate before you eat and see if you agree that this is enough. Would you think it was enough if you were in a restaurant? That is your clue. Taking seconds will overload your gut and overwork your digestive system. When your digestive system is free from processing that food you put in there, it can work on making you healthy. That’s what IF/intermittent fasting is all about. But that, too, is another article. Just be sure to concentrate on eating while you’re eating. We tend to gulp food while walking around. I’m the worst while I’m cooking, and I’ve resolved not to do that any longer. So eat slowly and mindfully. Put down your fork between bites. Breathe.

So be well, enjoy your food. Eat hearty (but don’t overeat!), and chew, chew, chew!

Wishing you peace and the best of health!

Living Well with CLL —
the Movie Part 1

If you’re interested in more CLL alternative health videos, here is video #1. (I know, I know, this is my second posting of a CLL video; I posted out of order. Please forgive my inexperience at becoming a movie “professional.”) In this movie, I introduce Teresa, who came with her husband, Keith, to visit us in Michigan. I took advantage of the opportunity to record our conversations. Teresa told me she had a lot of questions, and I thought it was a good idea to share those questions online. It turns out that Teresa also has a lot of good ideas to share, even though she’s only be at it for a few months. I am impressed… and grateful for this new connection. And please return again and again as I continue to figure out how to make these videos! 🙂

 

New CLL Alternatives Video

I made a series of videos with Teresa, a CLL buddy I met through this site — and who was visiting the state for her son’s graduation. This is the first of what will be many videos from this meeting. I hope you get some good information from it.  It took me some time to figure out the iMovie software. It turns out that it’s easiest to edit and create the video on my iphone — and also to upload it to youtube the same way. Another (funny) fact…the best how-to videos about how to make DIY movies are on youtube and made by kids!Â