CLL Alternatives

CLL DIY treatment

Posted by: Denise on: August 28, 2020

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 Covid-19 Update

Posted by: Denise on: August 3, 2020

Denise in her grandkids’ backyard playhouse.

So it’s August 3, 2020, and despite all my expectations, all of us (CLL or not) are still dealing with the COVID-19 pandemic. I have good news to share. While I am still absolutely careful (and “safe”), despite my long-term CLL diagnosis, I’m not nearly as crazed, worried and frightened as I was earlier in the process. Why? There are a few reasons.

Keeping track. I’ve been watching the stats for Michigan, where I live. In fact, we live in one of the “hot spots,” and early in the course of this thing I live close enough to a main street to hear the ambulance sirens wailing on their way to either Beaumont or Providence Hospital. Very unsettling, to say the least. I knew many people who took ill, some who we’d been with socially just about when they’d become infected — two generations of the same family. Thankfully, they’ve all had a full recovery and no hospitalizations.

We are no longer a hot spot. (Yay!) Yes, there are more cases. But I also look at the daily deaths. And daily deaths are way down. I’m sure one of your local stations would have the same where you live. Be sure to click on all three tabs so that you can see the cases, the recoveries, and the deaths. If you look at the accumulated death rate (scroll down to find this), it’s horrible, going up, up, up! But if you look at the daily deaths, you can see that the numbers are way down.

Why is the death rate down? I truly don’t have a definitive answer. We only get the information that is given us. I can make an educated guess. It could be that younger people are among the ill, and they are, as a group, more able to recuperate. It could be we’re better protecting our residents in nursing homes. It could be that the disease itself has mutated and is now less lethal. It could be that we have better treatments that are keeping people from going into that final deadly stage with the cytokine storms we’ve been hearing about. Whatever the case, in southeast Michigan, right here in a former epicenter, we’re doing pretty well. Thank God!

So what am I doing to be safe? (Disclaimer here: this is what I do, and not a blanket recommendation. Consult with your own physician or trusted health professional if you have reservations. Or research it further — which is always a good idea.) Despite these wonderful Michigan indicators, we still have to be careful. Just like we have to be careful all the time, because of our CLL diagnosis. Here is a list:

  1. I wear a mask. I don’t like it, particularly when it acts like summer here, and the temps are in the 90s, along with the attending humidity. I don’t wear it all the time, though. I wear it at work, but only when I have to leave my one-person (me) office and mingle with others.
  2. Disposable gloves. When I go to the market (yes! I go to the market), I wear not only the mask, but also some disposable gloves. I know, I know. “They” have told us not to wear gloves. Sorry! “They” used to tell us not to wear a mask, either. So there. No harm done. I wear some disposable plastic gloves made for sandwich making 🙂 and remove them and my mask, once I return to my car.
  3. Supplements. I’ve added to my boatload of supplements. Time for a list within a list: a.) Quercetin with zinc is supposed to be the next best thing to hydrochloroquine. The recommendation is to take it as soon as you suspect symptoms. I take it prophylactically. Which means I take it all the time, ‘just in case.’ I believe it fortifies me and keeps me from getting ill to begin with. I have no discernible side effects.
    b.) Beta Glucan. Beta glucan with l-lysine. Read the beta glucan article for information about this immune enhancer, which I ‘m now taking regularly. I take the product that includes l-lysine, which is an anti-viral I’ve used before to successfully get rid of cold sores. c.) N-A-C (N-acetylcysteine) Here is an article that includes information about N-A-C, as well as many other helpful supplements. I’ve been taking N-A-C for over a year now to help prevent hearing loss (along with other supplements –ai yi yi, I do take a lot!) It does help for that as well.

Please keep in mind that these supplements are just that…supplements. I still keep to a healthy diet with no added sugar, etc., etc. Get sleep, exercise, clean water, clean air, reduce stress (when possible), and all that other healthy stuff. Read through this blog for more of that.

The bottom line is that I’m treating the pandemic, now, the same way I treat CLL. I take precautions, I stick to them like glue. And then, I just live my life. It feels a lot more normal.

What are you doing to make yourself feel safe during these crazy times? Please write and let me know.

As always, wishing you the very best of health,

Denise

CLL Alternatives Gets Updated Look

Posted by: Denise on: June 19, 2020

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!

Posted by: Denise on: March 18, 2020


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 Personal Care Products

Posted by: Denise on: February 14, 2020

Personal care products for CLL
Some of my personal care items.

Today I’d like to talk about personal care products and how using the right things can absolutely help your immune system keep  your CLL symptoms and progression at bay. Here, in simple terms, is the theory behind it, in case you or a loved person is new to fighting leukemia or cancer. Our immune systems have a big 24/7 job. The first purpose of the immune system is to fight off pathogens, things like bacteria, virus, fungus and the like. When your immune system is instead clearing toxic matter out of your body, it overloads the system and makes it harder for you to fight off colds…and leukemia. So give your body a break!

In modern times, our immune systems are also tasked with fighting off toxics and other nasty things in the environment. So if you’re spraying your home with pesticide because you’re not fond of spiders or flies (or some other pest), you are putting a burden on your immune system, which has to make an effort to clear the toxins out of your body. Some of the toxins, like pesticides, are obvious. 

Other toxins are more subtle and hidden in your self-care products, like your toothpaste and shampoos. Always look at the ingredients on the label. If there are things you cannot pronounce, chances are it’s not a good choice. Too many chemicals!

I would recommend going organic, but that is really not enough. Unless you are familiar with a particular manufacturer and know that their products are ‘clean,’ that is free from toxic ingredients, I suggest you check it out with EWG.org (the Environmental Working Group). This organization tests products and rates them on their website. This is an invaluable tool for preserving your health! 

So what do I use? What are my habits. I will share.

Face and body cream.

I use good old-fashioned coconut oil. Yes! I buy the organic tubs at Costco and transfer a small amount into a glass container which I keep in the bathroom. It’s called ‘oil,’ but if you live in Michigan or other northern climes, it’s really more of a chalky oily paste until we’re experiencing deep summer. The trick of using it is to take about a half finger-tip of from the container and warm it between your palms, where it will melt into oil. Then spread onto the backs of your hands and then onto your face and body. Make sure your hands are clean when you start this process. 

The ingredients here are one. Coconut oil, and organic coconut oil at that. No need to look this one up on EWG.org. If this doesn’t appeal to you, go to your local health food store or order online your choice of organic oils, such as avocado, jojoba, almond, etc., etc. I used to do that, too, but I’ve learned to love coconut!

Hand Cream.

Yes, in Michigan winters this can be a separate category. When coconut oil isn’t enough, I use O’Keefe’s Working Hands. Yes, it passes the EWG.org smell test and it works! When my hands start getting rough I apply at bed time, when there are a few hours before my hands will be in water. If I wait too long and my fingers start to crack (ouch!), I apply the Sierra Bees lip balm on the finger cracks. Instant relief and it helps it heal. Once again, night time is best for me, as I am a compulsive hand washer.

Toothpaste.

There are people who make their own, and I encourage you, if you are so inclined to look up recipes for home-made. That said, while I spend a LOT of time on my personal care and health, making toothpaste is not my choice. Instead I’ve been using Jasen’s Powersmile. It works well, tastes great, and I’m getting good dental check-ups. Several times a week I wet my tootbrush with plain old peroxide before adding the toothpaste. Over time, it has whitened my teeth, with no toxic effect!

Soap.

I use Dove brand scent-free soap for ‘sensitive skin.’ I tried the organic type made locally by a dedicated organic soap maker, but…over time my plumbing got clogged with the cement created by rinsing my hands in the sink. (Have I mentioned that I wash my hands a lot, maybe too much?) I was told since then that if you use both the organic soap AND conventional soap, the chemical reaction in your plumbing creates the problem we had. So I reverted to my Dove soap. It doesn’t seem to hurt my numbers at all. 

Dishwash Liquid.

This one I scout around and buy the brands that have no chemically ingredients. My current favorite is Trader Joe’s Lavendar and Tea Tree scented soap. While it doesn’t totally pass the smell test of ingredients, at least the ingredients are listed! On a Palmolive dish soap my husband bought one time, the only reference to ingredients was “no unnecessary ingredients.” I would have preferred a listing, and haven’t bought it since. Keep in mind…dishwash soap is not applied directly to your skin like hand cream. Still, it’s best to limit your contact with these potentially toxic chemicals. 

Fragrances.

I’ve always been allergic to perfume so, so much for that. But, that said, watch out for fragrances in other personal care products. If you check things out in EWG.org, you might notice that the fragrances added to personal care products, soap included, are toxic! If a natural/organic product has lavender, tea tree oil, or other true scent added (as opposed to a chemical substitute), leave this product on the shelf and make another choice. This goes for liquid hand soaps and bathroom spray! (The best bathroom spray is an open window!! Just saying.) 

Makeup.

Well, I don’t wear much, even though sometimes I think I should (but not for health reasons J). I use Ecco Bella and Suzanne Sommers products, and for lip gloss I use Sierra Bees (which I find on iherb.com.) Once again, whatever your choice, run it through the EWG.org app either on your desktop or on your phone. Check before you buy!

Shampoo and Conditioner.

Okay, I have difficult-to-deal-with, unruly, prone-to-frizz curly hair. Nothing but the Deva Curl products (not organic) make my hair look okay enough to make me happy. Happiness matters. However, I do get my bloodwork done regularly and if it were a choice between acceptable hair and my life, LIFE would win every time. This product/manufacturer touts that they do not include sulfates, parabens or silicone. This is nice, but they also include many ingredients I cannot pronounce and I’m afraid to look up. This is a conscious choice. I’m pretty much an annoyingly goody-goody Girl Scout when it comes to my health habits. This is my one questionable habit that is always up for change. But thankfully, so far, so good.

Before I sign off, I would like to apologize for waiting so long between posts about CLL! I’m alive and well, in case any who returns to this site from time to time was concerned. The reason for my absence is many. But one main concern of mine is that I felt this site was being sidelined in the search engines, particularly by the big one who (starts with a G and) will not be named.  More than one of you wrote to tell me that this is not true. That my words do in fact reach people who can be encouraged and helped by what I share. So I’m back!

In addition to grandchild number six (who knew! I only have two sons!) I’ve been busy working at my regular job and also on what is probably a less important site that is near and dear to my heart. Perhaps one day I will link to it on this site, which is in great need of updating. All in good time.

If you have any personal care product recipes or product suggestions, please share. I’d love to hear from you! 

Wishing you the best of health and a nice, long life! – Denise

CLL: Facing the Fear and Loneliness

Posted by: Denise on: March 31, 2019

I just answered an email from a CLL-buddy who is feeling the fear and loneliness of a CLL diagnosis. She does not want to burden her husband by dwelling on her dark thoughts and worries about CLL, and her friends don’t seem to be any comfort. Of course not! This worries them too, and while they wouldn’t say it to her, knowing that a friend has a potentially fatal diagnosis makes them worry about their own lives, as well as about their friend. So what is a person to do? This was my answer to her:

Dear CLL Buddy,
I do understand how difficult it is to keep a happy face on this when you are so frightened. Eventually, you will feel confidence in yourself and in your health, and you won’t feel so frightened. Believe me, you are not alone in having fear of CLL! Here are a few suggestions that have worked for me.

1. Allow yourself to be frightened or upset for only one day at a time, particularly after a blood test that wasn’t what you wanted.

2. Research. The next day, concentrate on the blood marker that concerns you, and start some research on what you can do about it. Look up supplements and herbs. Make a lifestyle change, etc.

3. Have fun! Find time every day to do something you enjoy that is relaxing and gets your mind off of CLL! Read a book, go to a funny movie, visit with a friend (and not talk about CLL) maybe shopping or an art museum or something that you find fun (and gets your mind off the CLL).

4. Find your own personal meditation. I’ve tried meditation tapes (now they would be CDs or better yet, mp3s). This wasn’t for me, but many people find relief in this. My personal meditation is reading novels or writing, or even drawing. I have sketch books, and I find that when I’m sketching, I’m not thinking of anything but the pencil and sketchbook. I lose track of time. It is wonderful! Think back to childhood and what you enjoyed doing that made you lose track of time. Give yourself a gift of figuring this out, and then act on it!

5. Get a good night’s sleep. Make your bedroom light-proof so you can get a good sleep at night and make your own melatonin. Nothing makes you feel better than a good night’s sleep!

6. A new watchword: you are NOT about to explode! Any doctor that would see you today would send you home and then go about his or her business. You are not in imminent danger! Enjoy today! None of us know if there is a tomorrow (we get hit by the bus, etc., who knows?) So why waste today? Enjoy it! It is a gift you are squandering on worry.

7. Recognize that you can gain control of your health. It wasn’t until I became Macrobiotic (ironically, I am no longer macrobiotic, but still…) that I started to see the control I could exert over my CLL diagnosis. After one month of giving up all processed foods back in 2005, my WBC dropped back to 14, where it had been at diagnosis. While I’ve moved on from Macrobiotics, the lesson learned was that I COULD get control of this CLL thing. Since then, I’ve also learned that healing is all about the gut, the digestive system. Work on your digestion and you are working on your health! I’ve not been able to get to where my blood work indicates I’m CLL-free, but I am back in stage zero.

8. Seek out a therapist. If all of this leaves you worried still, see if you can find a therapist. There is nothing to be ashamed of about this. You are facing down your mortality, and we don’t like to do that. It is crazy-making. Back in 2003 or maybe 2004, I was constantly crying with worry and wondering how my boys would grow into manhood without me there. I worried about my husband. I cried about never meeting grandchildren. And see, all those tears were a waste of energy. That said, I DID see a therapist at that time, and it really helped me.

What I learned from him at that time was that I had to take action. Until that point, I felt like I was a victim; I had this CLL diagnosis and I believed it was too late to do anything about it. Damage was done, and I had to accept my fate. Now THAT was crazy! There was so much I could do, but talking to this therapist helped me see it. 

If you continue to be depressed, please find someone who might help. If they make you feel worse, find a different therapist. But do try all the other items above, first.

And I AM here for you. So please write whenever you need to. I do truly understand. I’m wishing you radiant health and a wonderfully happy day! Love, Denise

PS Writing about your worries here, on the site, really helps others. We’re all in this together!

CLL: Mushrooms and Neutrophils

Posted by: Denise on: March 8, 2019

CLL Mushroom Powder
CLL Mushroom Powder

In a recent email one of my CLL buddies wrote and told me about her improvement in neutrophil count She had been taking  600 mg of shitake, four tablets of Maitake-D Fraction, 1950 mg (3 tablets) of Reishi, and two tablets of AHCC. She noted that her neutrophil count went up to a high normal at her next blood test! Great news!!!

After this success, she experimented by dropping to a 1/4 of the dosage. Unfortunately, at her next blood test, the neutrophils showed a rapid descent. It was no longer in normal range. This CLL friend of mine wanted my opinion of what to do.

Management vs. Cure
Of course, I told her to go back on the dose that worked for her! Not as a doctor (of course) but as a CLL friend. The reason being — and this is so important — we are not curing our CLL by everything we do and all the supplements we take; we are managing it! Let me repeat…it would be wonderful if we all could have a home-made cure. I’ve spoken to three men who feel that they have, in fact, beaten CLL by DIY, home-done efforts. This has NOT been the case for me. I still would be diagnosed today if I had a blood draw for the first time. They would call me in or call me back to give me the hideous news. And yet, here I am, alive and quite well (thank you very much) after 17.5 years at this. Why? Because I am managing the disease, and this is working for me!

Now, why do have the photo of mushroom powder on the top of this post? Good question. Because of this CLL friend’s email, I reviewed my own history, my supplement notes in particular. I used to take the Maitake D Fractions, and that was at a time when I was starting to show real improvement. (At that time, my WBC went down over 20 points and for a change my RBC didn’t nosedive along with it. Whew!) I was also cooking low and slow at that time, and I gave that one thing a lot (maybe too much) credit.

After I stopped taking the Maitake D Fractions (recommended by one of the CLL healed, no less) I substituted by buying dried shitake mushrooms and grinding it to add to soups and stews. Later (I really don’t know when) I started buying organic mushroom powders, and adding a scoop to my smoothies I have about five days/week. The good health, including normal absolute neutrophil counts, continued, and continue to this day.

I mix up the type of mushrooms. The pictured above are just four of the variety that I alternate day by day. If you do a search on each of these mushrooms, along with “CLL” you will see there is evidence that this food (not a medicine) is good for you! It helps people with CLL! The types of mushrooms I take regularly include shitake, maitake, reishi, cordyceps, lion’s mane, and turkey tail. I have no favorites; once they’re mixed in the smoothie I can hardly tell they’re there.

Are Mushrooms ‘the’ Cure?
Do I recommend that you drop everything else and start taking mushroom powder and that this alone will heal you? Not such a good question this time. The answer is NO! Getting cancer or leukemia is a comprehensive process, and so it healing yourself enough so that you can continue to live a good life. All the other pillars that create health matter: clean food, clean air, clean water, reduced/managed stress, good sleep, meditation, finding joy in life; these are ALL critical, and not something that you will find in your oncologist’s office. Perhaps not even in your alternative practitioners office. We need all our professionals, but to be well you have to count on yourself.

What about the Peak Immune? I’ve written about this product before. I am NOT affiliated with this company or any other. This is a non-profit site written only to share and help! I started Peak Immune years ago, at the advice of a Chinese herbalist (himself recommended by an alternative MD I traveled to see in New York.) Peak Immune is an immune modulator. This means that it regulates your immune system to the place it should be. Not ramped too high, and not dropped so low that you are in physical danger.

Peak Immune is not a mushroom. I believe it’s rice bran arabica, in this case a food derivitive. I’ve taken Peak Immune for years (cheapest in the States at LuckyVitamins.com, when you buy via autoship). It has been the one thing for certain that has increased my neutrophils. On the literature it says that it “increases the activity of NK (natural killer) cells.” So when I first started taking it, I wasn’t expecting it to increase my neutrophils But it most certainly does. Now, with the mushroom powder, I take only three Peak Immune capsules a day, and I seem to be holding steady.

You have to test this for yourself. Once again, this is my experience, along with the stated experience of a woman who wrote me recently. It is not harmful; it is a food. The mushrooms are not inexpensive, and neither is the Peak Immune. You don’t have to buy an arsenal like I do, but change it up, one at a time. And if you do try this, and test your results at your next blood draw, let me know — good or bad — how it works out.

Special request: While I do respond to emails, I think it’s kindest of everyone to respond directly on this site, to the pertinent post. This will help people on a search find not only my words, but your concerns, questions, worries, and your own answers and experience as well. I promise you will remain anonymous. It all helps!

As a final note, I am still working on my book. I will check in again, not necessarily “soon,” but please know that it is in progress.

Wishing you peace, joy, and the very best of health! – Denise

CLL: Intermittent Fasting,
Reducing Carbs, and Detox Bath

Posted by: Denise on: February 11, 2019

Third birthday party fun!

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.

  1. 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!
  2. 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.
  3. 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

Farmer's Market for CLL

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!