CLL: Intermittent Fasting,
Reducing Carbs, and Detox Bath
Posted by: Denise on: February 11, 2019
I just wanted to check in because it’s been a while since I’ve made a post, and one of my CLL-buddies just wrote to ask if I’m okay. I am. I am okay. My numbers continue to be stable and I like to coast occasionally. By “coast” I mean that I continue doing whatever is working, and otherwise try to live a normal life. This can be a challenge. I will explain.
Getting me ALL BETTER. My husband is a real go-getter, and lately he’s been of a mind to get me ALL BETTER. He’d like me to be one of the people who get a clean bill of health when they go to the doctor. In my case, that would be a CBC (complete blood count) that is totally normal. Now look at my picture. Do I look like a normal person? (Don’t answer that.) Sometimes I don’t even try.
But back to my husband and his quest. He and I were scheduled to go the Weston A. Price Foundation (WAPF) Conference last November. (Check out their podcasts; they’re amazing!) Unfortunately, I came down with a cold from hell (was it the flu? I’m not sure) right before our scheduled flight. We were meeting a friend, so hubby went without me. I have to say that the WAPF is loaded with wonderful information. He was in Baltimore for three days of expert speakers on all things health. And being my husband (I know him well; it’s been 42 years) he came home with books, and also ordered ALL the recordings of not only the 2018 conference, but also the 2016 and 2017. It’s a bonanza of information. My husband is driving me crazy!
Don’t get me wrong. I know that his heart is in the right place. He loves me and wants me to keep living, which is a wonderful thing. And despite the fact that I feel like a Girl Scout (or maybe a Tibetan nun) about my lifestyle and eating habits, he has been encouraging (okay, pestering) me to CHANGE. As much as I proselytize about taking charge of your health on this site, I understand what it’s like to be on the receiving end. It can be a challenge, and sometimes I’m grumpy.
Here are the changes I’ve made so far.
- IF (intermittent fasting). This could be its whole own post. But briefly: the point is to put as many hours as possible between your last meal of the day and your breakfast (break-fast) the following morning. I’m up to about 16 hours now. It sounds like a lot, but it’s not really. I finish eating dinner at about 7pm, and don’t have breakfast till about 11am. I do have coffee and tea, and sometimes some chicken broth. The point is to give your digestive system a chance to not only get the obvious job of digestion done, but also to start scavenging around the body and ridding it of pathogens and other odds items, like toxins, that don’t belong there. You are supposed to lose weight, but so far I have not. In fact, I started gaining weight. Oy!
- Lowering my carb intake. Okay, if you start following the now-popular KETO diet, the point is to eat animal protein (but not to excess), lots and lots of fat (nuts, seeds, butter, olive oil come to mind), and low-carb vegetables (skip the root vegetables and stick with the leafy stuff), and a bare minimum of fruit. This has been challenging and I’m not there yet, and may never be strictly KETO. What I have changed, as of a week ago, is I’ve eliminated my morning smoothie as the only way it is palatable to me is with a LOT of fruit. Good fruit like berries and green apple, but still… a whole lot of it. Instead I’m having eggs or sardines with avocado, mushroom powder, and some nuts. It’s actually delicious, so no problem there.
- Epsom salt baths. Okay, I’ve only had one, but it was wonderful! You take a bath with Epsom salt and baking soda (Google for amounts; I think I used too much) and soak for about a half hour. I did this before bed and I was warmed to my core and slept like a well-fed baby. Unfortunately, I was still woozy in the morning, but I’ve read that changes after several baths. This is supposed to detox, removing toxins from your skin, much like sweating in a sauna.
The results? I don’t have results yet! Well, I did lose weight since cutting back on fruit. But that is not really the entire point of this thing. I was my thinnest (too thin!) when I was Macrobiotic back in 2005, but not my healthiest. I will keep on posting and let you know what works, and what doesn’t. I just wanted to check in so that no one worries that I’m going downhill. I am fine. I really am. Please feel free to post any opinion you might have about these changes.
Wishing you good health and the ability to coast! – Denise
PS: I do actually work on that elusive book of mine. Maybe that’s why I don’t post as much as I should.
CLL The Cure is in the Grocery Store
Posted by: Denise on: October 5, 2018
- In: CLL Diet | Lifestyle
- 15 Comments
Shopping for a future pickle at our local Farmer’s Market.
Last night my husband and I had what we call “fast food†for dinner. Don’t raise your eyebrows; it’s not what you think. I tend to cook an elaborate dinner, in quantity suitable for leftovers, about three times a week. After that, we either eat leftovers combined with freshly steamed vegetables or a raw salad, or we make “fast food.†In this case, it was slow-fried eggs, corn on the cob, and steamed brussels sprouts.
Why is this fast? Dinner took considerably less than a half hour, and it was delicious! Before I get into recipes or cooking techniques (like what is “slow-fried�) I need to make another point. Success in the kitchen, as measured by truly healthy and nutritious meals and snacks that taste good, require more than kitchen skills. They require shopping!
Shopping Time!
Yes, if you want to beat this CLL thing, and you want to do it naturally, you have to spend some time in the supermarket and, if available, your local farmer’s market. This is another case of failing to plan is planning to fail. You have to shop the stores in your neighborhood until you find the best places for abundant organic fruit and vegetables. Yes, I do eat eggs, chicken, fish, and sometimes even beef, but I still eat a plant-based diet. The animal protein is more of a side dish.
Times have changed.
It wasn’t long ago that I had to go to health food stores for a fairly limited and often dried-out selection of fresh veggies. Today, even the corporate behemoths (like Kroger, here in SE Michigan) have an impressively well-stocked organic produce section. My personal choices these days are Kroger, Trader Joe’s, and the local Royal Oak farmer’s market. They all have their good and bad points. We (hubby and I) often go to two markets in one evening for a quick, targeted shopping trip. We know each store’s layout and can get in and out quickly. Even with these quick trips, keep in mind that you will likely have to do this at least twice a week. Some vegetables keep only so long, and if you’re doing it right you’ll find that your refrigerator has an ever-dwindling selection of fresh produce
Another time saver is stopping in on the way home. Hubby does this more than me, especially in the summer, as I take my dog, Tina, to work, and I don’t like to leave her in the car unless it’s cold outside. (It’s cold outside today now…sigh.)
Another side note: sometimes your organic produce choice won’t look so good. Sometimes conventional might be a better choice, in which case please soak in 50-50 white vinegar and water to cleanse as much pesticide residue as possible. Another choice to shop more than one market. If the selection at the first isn’t so good, you still have one more chance to get your organics.
And where do I buy all my animal protein?
This is not an answer set in stone. We still buy eggs from our local farmer’s market. They are consistently better than the organic eggs at any supermarket. The yokes are orange rather than yellow, and they are delicious! In the past my meat sources have been Trader Joe’s, Whole Foods, farmer’s market, other specialty stores. You have to continually be aware and look for the best places. Your local Weston A Price chapter can help you source local good foods.
The point is to BE PREPARED.
Shop ahead and get the best organic veggies and fruits in season. You can rinse and freeze the fruit. Store the leafy greens and other veggies in a loosely closed plastic bag so that some air can get in. This works for me, and it’s fairly simple. Simple is good. The more complicated you make your food gathering, the more of a task it will seem.
Of course, it’s not all about veggies and fruit. Also keep stocked with organic pastured free-range chicken and grass-fed pastured beef, wild caught white fish and salmon, and pastured free-range eggs. An extra freezer is wonderful, if you can afford it. Beyond that are the seasonings and sauces. I’m honestly not the most skilled cook, but I do keep tapioca starch (flour) on hand for mixing with water and seasonings and pouring over a stir fry when almost done. It turns into a delightful gravy reminiscent of a Chinese food dish.
Also keep organic, extra-virgin olive oil in the cupboard, along with apple cider vinegar, other vinegars (I love Eden-brand umi-plum…yum!) and balsamic vinegar as well. (all organic, please) A supply of fresh lemon is great to add to dressings and sauces, and also to squeeze into a morning glass of water for your alkalinity and digestion.
Coming soon to a blog near you!
In another post soon, I will write about some of my favorite cooking techniques. Not only should your vegetables be organic and fresh, and your animal protein free-range, organic and pastured, but nothing should be over cooked at temperatures above 300-degrees Fahrenheit.  This is a challenge I’ve managed to overcome by checking out advice on Google and youtube, and by experimenting on my own. I am happy to share and will do so soon.
In the meantime, get out to your local market and start checking out the best sources and prices. You’re in this for the long haul. As environmental doctor Sherry Rogers wrote, “The Cure is in the Kitchen.†I would add, in order for that to happen you have to get to your grocery store first!
Happy shopping! – Denise
PS A good cancer cookbook is The Cancer Fighting Kitchen. There is an earlier addition at a greatly reduced cost on Amazon.
CLL and Intermittent Fasting
Posted by: Denise on: September 25, 2018
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
Posted by: Denise on: August 28, 2018
- In: CLL Diet | Lifestyle
- 9 Comments
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!
CLL Book…Taking Topics
Posted by: Denise on: July 19, 2018
My four grandkids. It doesn’t get better than this!
It’s been a while since I’ve posted about writing a CLL book. I still want to! (I still haven’t.) I have compiled a list of important topics to be covered. I will list below. I’m taking suggestions. What would you like in a book like this (that isn’t included in the topics below)? I can’t promise that I’ll be able to write about any of your questions, but I have to say that when I read your comments, I always find myself learning more than I did when I first wrote the original post.
Here are my proposed topics:
(Keep in mind that a “topic” might turn into a whole chapter, or perhaps a small part of a chapter. It all depends.)
Living with CLL – It Doesn’t Have to be a Cure! (this might be the title)
Diagnosed with CLL: What to do? When to tell?
Doctors – Hematologists, Alternative Doctors, Alternative Practitioners/How to Find/ How to Choose
Blood Tests – what matters on a blood test. Using DirectLabs.com
Supplements – What I (Denise) take and why. How to evaluate what to take yourself.
Alternative Treatments – Ultraviolet Blood Irradiation-Accupuncture- Vit C IV – Laetrile IV
Managing the Fear of a CLL Diagnosis
CT Scans and Other Tests
Cooking Low and Slow for CLL – Why? How? Basic Recipe?
Eating Organic Foods
Do I have to be Vegan or Vegetarian? Food Options: Veg/Fruit/Meat/Poultry/Fish/Nuts/Seeds/Dairy and ratios
Bone Broth Soup – benefits and instructions
Fermented Veggies – benefits and instructions
Eating Out/Plan Ahead or Plan to Fail
CLL and Living a Non-Toxic Life/pesticides/lawns/EMFs/house cleaning/personal care products/EWG.org/clothing/sheets/etc.
My Macrobiotic Experience and How it Helped (even though I’m no longer macrobiotic!)
Either You’re Committed or You’re Not/doctor has 15 minutes and you have a lifetime/drugs/radiation/chemo/
(My husband and I disagree on this one. For the record, I think it’s fine to have conventional treatment if your life is immediately on the line. However, if you’re going to get well as a DIY project, if you’ve had conventional treatment or not, you have to live this lifestyle every day. EVERY. DAY. Hubby thinks it’s okay to do some things, that it’s better than nothing. I say, if you want results, get committed!)
Never Stop Learning
This is my list to this point. I am more than open to suggestion! Please comment. As always, wishing you all the very best of health! – Denise
CLL Bad Blood Test: Now What?
Posted by: Denise on: March 18, 2018
Reading time with Naomi and Moshe. Life is good!
Dear CLL Reader,
And…here’s the important part: at some point I learned that if my doctor wasn’t sounding alarm bells, then I just wasn’t going to get nervous either. What I also learned was to take a day (maybe two) to allow myself to be upset and depressed. Then it was time to do research and find ways to improve the blood test scores. So you’re on the right track by writing me. (Although by no means should I be your only source of answers.) Check each of your markers and do a Internet search. There are many examples below.
CLL WBC natural treatment.I just did this search and came up with this page:Â http://
The next question is: do you cook “low and slow”? This means at low temperature for a longer time, making certain never to burn or totally dry our your food. If you’ve been grilling or overcooking food, this is a place you can make an improvement.
Eat bone broth soup and fermented veggies. This is more advanced, as in not what people will start to do the moment they decide to take control. However, learning to make your own fermented vegetables provides probiotics that far exceed the numbers in those pills we buy online or in the health food stores! See this article: http://darwinian-medicine.com/ask-eirik-how-many-bacteria-are-there-in-sauerkraut/. And at least three alternative doctors/practitioners told me personally to have bone broth soup specifically for leukemia. These are both healing foods. The Weston Price Foundation is all about both these foods. They have local chapters that teach classes on how to make your own sauerkraut and other veggies, and also how to make bone broth soup.
D’limonene and CLL. Are you eating citrus? I was doing very well eating whole oranges 5X/week. I had them in my smoothie. (Organic, of course.) (I’m not able to do that anymore for a non-CLL reason, but this is a very healthy thing to eat. The peel has d-limonene, which is specifically anti-leukemia.) So if you’re already having a smoothie, add that orange (or lemon or grapefruit or lime). Here is a study about that from a search on “Dlimonene Leukemia”: https://www.ncbi.
Vitamin D3 and CLL. What about vitamin D3? have you had it tested? Your level in a Vit D hydroxy test should be somewhere between 70 and 100, in order to battle cancer. I takek 9000 IU of vit D3 every day, and test my levels about 4X a year. (It’s a blood test.) I also take at least one vitamin K2 pill/day to balance out my vitamin D3!There are also studies that indicate that D3 helps people with CLL. Here is one from a “Vitamin D Leukemia” search: https://www.
Other ways to get well. Are you getting enough sleep? Are you avoiding toxins? Are you taking Peak Immune by Daiwa? (check out LuckyVitamins.com, for the best deal.) I have a comprehensive list of what to do in this article: http://www.
Remember that the C in CLL is for Chronic. Generally, this is a slow-moving illness, giving us time to work on our wellness. An important part of getting well is to think of yourself as well, and to expect to be here for the long haul. Visualize yourself in your eighties. Think of what life will be like then. I know it’s really hard to conquer the fear, but there is joy and life on the other side! I remember when I first became Macrobiotic in 2005. That is what helped me conquer the fear. At that time, my WBC had jumped into the 20s, so like you, I felt the end was near. It wasn’t! But early July, it will be 17 years and counting. If it’s like this for me, it can be like this for you, too. Hang in there, and allow yourself some happy thoughts. Do something fun and get away from it for a while, and then double down with one or two new things to add to your wellness plan.
Out of the Closet: When to Tell Friends and Family about a CLL Diagnosis
Posted by: Denise on: November 11, 2017
For whatever reason, when I was first diagnosed with chronic lymphocytic leukemia by my original hematologist, he advised that I keep the news to myself.
“It’s stage zero. You have no symptoms; you look healthy. So there’s really no reason to tell everyone you know—unless you want to.â€
Unless you want to.
I had no idea what I wanted. I honestly didn’t even believe I really had CLL until my follow-up visit. I was totally expecting them to test my blood and apologize for their mistake. And I knew what I would say to that. “Thank you! God bless you! No harm, no foul.†And most of all… “Good bye!â€
Of course, that didn’t happen.
But back to the issue of what and when to tell people. Now that it’s been sixteen years, as of this writing, I’ve learned that most people tell everyone everything. From day one.
But not me. I told my immediate family and one special friend and her husband. I could tell by her husband’s response that he felt like he was talking to a doomed woman. At that moment I knew what I wanted, and that’s what I did for nearly fifteen years.
I told no one.
I felt safe in my anonymity. I told myself I would share my story when I started chemo. At the time, I was positive chemo was inevitable. In 2001 if you look up “CLL†or “chronic lymphocytic leukemia†on Google, the news was not good. It was all about the Rai or Binet stages. And while I was low on both, all the attending information was not encouraging. Even the brochure from the hematologist was a colossal downer. The last section was about end-of-life decisions. How’s that for encouragement?
I didn’t want everyone to think of me as a dead woman, so I kept my mouth shut and swore my family to secrecy. I kept it that way for a long, long time. For years, actually.
It wasn’t until November 2011 that I started CLL Alternatives.com at the urging of my husband. He said it was time to share my story with other people. I wasn’t keen on that idea because I wasn’t ‘cured’ yet and, at the time, that was my personal benchmark. I wanted to be cancer free.
The reason for this benchmark: I’d been reading a site by a man with CLL who was trying just about every alternative under the sun, including artemisinin. Unfortunately, his final entry was a farewell post. His CLL was fatal, his body was riddled with cancer, and he didn’t have anything to add to his site. I was horrified. For him. For myself. I didn’t want to start a site to do that to others.
But still…by 2011 I was already ten years into this thing and it appeared I wasn’t about to sign off just yet. Not only that, I’d been actively researching and trying out alternatives and changing my lifestyle—and seeing results! So I felt I did, in fact, have something to share. So I started my web site, bringing me out of the closet, albeit anonymously. And ironically.
But slowly, some time around 2013, I started telling friends, one at a time. At first it made me uneasy, as if telling my tale would somehow make it more real. And lethal. But things had changed since 2001. A lot of people I knew were living with cancer. It wasn’t quite the sudden and immediate death sentence it had been.
So I told more friends, one by one, especially and always those who had or were close to someone who had a diagnosis. At this point, it couldn’t make the diagnosis any more real than it already was. And it certainly didn’t make the course of the disease any worse. In fact, by 2013, my WBC (white blood count) started to drop as a result of starting a raw food/low temperature-cooked food diet.
At the time of this writing, after sixteen years of living with a CLL diagnosis, I believe I’m out of the closet. I’m Denise and I have a CLL Diagnosis. Here is an important point: because of Hessel Baartse’s web site and story, I’ve learned to refuse to say that I “have CLL.†No. Instead I say I have a “CLL diagnosis.†This separates me from the illness, and I enjoy every degree of separation!
So what should you do if you are newly diagnosed? To tell or not to tell? My answer: it’s entirely up to you. I’d go with whatever feels right. For me, I needed the cushion of years—and wellness—before I could share my story with my in-person friends. I’m so glad my husband encouraged me to start CLLAlternatives.com because I’ve made so many friends, and so many valuable connections. And if I’ve helped a lot of people along the way, well, that’s kind of the point.
CLL: Curable? Manageable?
Posted by: Denise on: September 1, 2017
Me (Denise) at my desk at work. Notice the journal, to my left, and my MacBook Air (not visible, but just to the front of the notebook), where I am penning a book about my CLL experience.
Hello, It’s September 1st of 2017, and I thought I just might be overdue on making a post here. An update, if you will. I’m doing fine. Great, even. As a matter of fact I pay more attention to my signs of aging than I do my CLL, which is amazing! When I realign my psyche, I realize that I’m totally grateful to be living long enough to worry about wrinkles! Yay. I’m 62, and I have four grandchildren. When I first started this CLL Odyssey, I wasn’t at all certain I’d reach this stage or status. But I have. And the more I read and learn, the more I believe that it’s not a fluke. Others have done it, and I’m doing it, too.
WBCs and other markers. When I was first diagnosed in 2001, my WBC was a paltry 14.something and I was in Stage Zero. Of course I was still totally freaked out, and gearing up to die sometime soon. Despite all my efforts, my highest WBC was somewhere around 47, in 2012 or so. (I don’t have my Excel Chart with me.) Today, at last reading it was 17.something. Better yet, it’s been in the teens for about over a year. And my hemoglobin, which has dipped as low as the 10s, has been consistently normal, and over 12, for the same period of time.
My magic bullet? I don’t have a magic bullet. And I’m not cancer-free, either. If I went to the doc’s office for the first time and had a blood test, I’d be diagnosed. (I’m working on this, but not at all with the fear factor; I just work to be as well as possible, very consistently.) But back to the magic bullet. Over the years (since 2001), I’ve changed up and tweaked my diet several times. I eat zero processed foods, I buy and eat organic as much as possible. I slow cook all foods, vegetable and animal protein. This means I have soups and stews, and slow stir fries, which all happen to be delish! I eat no sugar or gluten, and the only dairy I eat is grass-fed butter. I’ve gotten rid of all toxic home care and personal care products. (This means I clean my house with baking soda, vinegar, and peroxide.) I exercise on an elliptical trainer, rebound, and lift weights 3-5 times/week. A big part of my daily/weekly diet is home-made fermented foods (sauerkraut and pickles) and bone broth soup. And I take a boatload of supplements, including my 9000 IU of vitamin D3 and four Peak Immune pills (by Daiwa) every day. I (try hard to) get to bed by 10 or 10:30 and get a good night’s sleep. And it is my goal to make my life as stress-free as reasonable and possible.
Okay, that’s my magic bullet. Or my magic ammunition. Sorry, I know it’s not an easy answer. But it works! It’s possible that if I tweaked just a bit more, I could get those numbers down to normal. But honestly, I’m pretty happy where I am. Watchful. Persistent and consistent. (I don’t cheat. Ever.) And despite all those changes, I feel like I live a pretty normal life. We enjoy our grandkids (and their parents), go out with friends, entertain. We even travel. Traveling is challenging, but worth it. We try to rent hotel rooms with kitchens, and bring enough food to make it comfortable. If it’s a weekend away, I just order a lot of salads in restaurants, and eat oatmeal for breakfast. But if it’s a week, and that’s the longest we ever go, we pack cooking equipment and containers to take food with us on bike trips, or wherever. It’s not normal like everyone else, but it works. It’s still fun. I guess it’s our “normal.”
A CLL Alternatives Book. I’ve decided to write a book. I know that the information in this web site is disjointed. I know I should spend more time on it. But despite all my best intentions, I normally do not. But I am a writer at heart. And I’ve started to pen a book that puts all of this information into perspective. And into chapters. This is not a money-making venture. I plan to have the book available as an ebook on Amazon for $0.99 and I will sell the POD (print-on-demand) book at cost. (Whatever they charge me to put it together, that will be the charge.) So whoever needs the book can have it. Once again, the book is not necessarily a blue print for what exactly to do with a CLL diagnosis. Because we’re all different. But…it will be a blueprint for learning and testing until you find what it is that YOU need to do to be well. I’m sure there will be a lot of commonality in everyone’s approach. And keep in mind that conventional allopathic treatment (chemo, etc.) is also not one-size-fits all.
This will be a long process, but I’m making my commitment here. My husband also wants to post videos of interviews and cooking demonstrations. I think the cooking would be helpful. I unfortunately learned how to cook naturally after our boys became adults and flew the coop.
Two Book Recommendations. Before I leave, I have to recommend two books. By rights, they should each be a separate blog post, and eventually (no promises) they may be. Both books opened my eyes and made me see that what I’m doing makes sense. And my results also make sense, too. I will go into no more detail but to say, please read these books! If you can choose only one, choose the The Metabolic Approach to Cancer, as it is most instructive of how to fight cancer with nutrition/etc. However, if you or a loved one has a leukemia or cancer diagnosis of any kind, you deserve to read Tripping over the Truth: How the Metabolic Theory of Cancer is Overturning One of Medicine’s Most Entrenched Paradigms.
Please respond by post or shoot me an email. We’re all in this together!
To your good health! – Denise