Category: Lifestyle

How your lifestyle and mindset can affect your health and recovery.

Alive and Well with CLL — 14.5 years now and counting…

Me and Peter with brand new grandson.
Me and Peter with brand new grandson.

I’ve been so busy with my life lately, that I’ve neglected posting here on my CLL web site. The good news is that I’m doing well! My numbers have been improving. I’m stable, and therefore have been able to concentrate on other things in my life: like my work and my grandkids. (Jared, pictured at left, is our fourth grandchild. When diagnosed in 2001, I didn’t know that I’d be blessed to live long enough to see our sons marry and have children.) However, sharing my CLL experience is so important to me. I’m doing well and it’s not by accident. It’s not “spontaneous,” even though that is how a conventional doctor might describe my condition. It might not be “spontaneous remission,” but instead “spontaneous improvement.”

There is so much I’ve done, and so many changes I’ve made, that it will take many, many posts to share everything there is that you can do to try and improve your health. I believe that a lot of what I’m doing would benefit anyone with any kind of cancer—not just blood cancers, and certainly not just CLL.

Unfortunately, there is no one-size-fits-all breakthrough. Not in the conventional medical world. And not in the alternative world. However, (this is a BIG however), the alternatives don’t hurt you. They may be more difficult and require more effort and commitment, but they will cause no harm.

Here is a quick laundry list of my changes:

1. I never eat burnt food or any food cooked at too high a temperature.

2. I stick mainly to organic food, whenever possible.

3. I eat out once or twice a week, tops. This means I take my lunch to work. (I don’t consider this a hardship anymore, but a pleasure.)

3. I ferment my own vegetables, and eat them at each meal, at least a little bit.

4. I drink filtered water and organic herbal tea (specifically raspberry leaf tea, as it doesn’t leach iron and I tend to be anemic).

5. I have a whole orange about 5X/week in my smoothie. By “whole,” I mean the peel and the pith (the white part). The pith contains d-limonene, which is anti-leukemic.

6. I drink a cup of home-made bone-broth soup nearly every day. Several sources have recommended bone broth for leukemia and other blood cancers and disorders.

7. I exercise 5X/week for 15 minutes. On an elliptical, a rebounder (trampoline) and with weights. I’m not an athlete, but still pretty fit for a 60-year old.

8. I get sleep at night!!! It feels wonderful. I shoot for going to bed at 10, and get into bed by 1030 or 11 each night. Since taking a new pill (for my hair, prescribed by an alternative doctor), I’ve been sleeping like a baby. Okay, I’ll amend that: I sleep like a baby without colic. : )

There is probably more, but I’m writing at the top of my head right now. Each of these eight items could be it’s own blog post. And I’ve been asked by my CLL-buddies who write to me to please post some recipes. And I will. I promise. It all takes time and I’m delighted to say that I have a busy (and pretty healthy!) life. But this matters to me. YOU matter to me. So I promise I will get on with it and keep posting.

If you’d like to be one of my CLL-buddies, please write me at cllalternatives @ gmail.com (with no spaces — those are for the mail-bots). And please feel free to post on this article and on this site, because the more we share, the more we help even more of us struggling with CLL.

Living Well with CLL — June 2015 Update

DenisePeterDogsSummer2014Living Well with CLL — June 2015 Update
It’s been just about fourteen years since I was first diagnosed with CLL, and I thought it was time I made an update. It’s always my goal to post more frequently. I worry that people who go to this site will get a flash of fear if I haven’t posted in months (or even in a year!). I know I used to worry that other CLL-ers might have become too ill to post — or worse. So I always resolve to post more frequently. One resolution I have made good on is that it’s now possible to make posts in the comments section of this site rather that to be available only via email. This is huge! The more we can communicate on this site, the more people can benefit from the information we put out here.

I would like to say that as much as I’ve started this site to help others, it has been helpful for me, too. So a big THANK YOU to all the people who have become my email buddies! We are all proving that CLL does not have to be a death sentence. We can survive with — and without — conventional treatment, depending on our needs and particular situation. Whether we choose to go conventional or not, all the good things we do for our health will help us stay well and prevail!

Now I feel like I’m writing a State of the Union address. But what I really want to do is give an update of my health. I’m doing very well! My last blood test was better than it had been in eight years! Perhaps I will soon post my personal Xcel sheet, showing my blood test results from June 2001 to the present. Now here comes the question: what have I been doing to be well and stay well (and even get a little better)?

I wish I could give you a magic-bullet answer. But the answer is simple and also complex. (sorry) If you look through this web site/blog you will see a lot of the things I’m doing and have done. But there are some basics and I will share them with you.

1. Get eight hours of sleep each night. We heal while sleeping, so why not get the most benefit out of this. You can go to mercola.com and look up suggestions to make this happen. What I personally do is eat a light dinner (most of the time), make certain your bedroom is super dark (room darkening blinds or drapes), take your magnesium before bed. Wind down and keep electronics out of your bedroom. (I do read my Kindle each night, but no TV.) I love this! It’s very luxurious to get enough sleep each night. I go to bed with the expectation of at least a half hour to read. After that I sleep well. Also, I try not to drink too much after dinner to avoid trips to the bathroom.

2. Reduce stress. Yes, life is worth living with less stress. Maybe even worth more than a high-stress life. Make subtle changes in your work life and in your personal life to accommodate this. Be kind to yourself. Imagine that you’re helping someone else, if that’s what it take to allow yourself to say ‘no’ to others’ demands. (This doesn’t mean you have to become self-centered; just that you don’t over-extend yourself to the point of making your life difficult.)

3. Eat food as close as possible to the way God made it. This means eating a lot of fresh, organic vegetables, either raw or lightly cooked — or better yet fermented. Learn how to ferment your own food. It’s easy once you get the hang of it. I can perhaps make some posts about how to do this. But honestly, youtube.com is loaded with videos of more talented people sharing their cooking and fermenting tips. I also eat organic beef, chicken, turkey, wild-caught salmon, some dairy (not much, still have some lactose intolerance), organic nuts and seeds (pre-soaked) and occasional bean and rice dishes. I soak all grains and legumes for several hours before draining, rinsing and cooking. This releases the phytic acids that protect the grains/beans from spoiling, but also make these foods hard to digest.

I’ve recently started to drink GT brand kombucha, which is a fermented tea — and it’s delicious! And also chock full of probiotics and a great way to detox. I’ve taken a class through my local Weston Price Foundation in how to make this drink at home. Can post about that as well, eventually.  The point is to take in as many natural probiotics in the fermented foods and drinks. This is much more effective that taking the probiotic pill. (Not that I’m against pills; I take a boatload daily.)

4. Never eat burnt or even browned foods. I know this is hard to deal with to start, but honestly I’ve learned how to make delicious foods even with slow-cooking only. I make soups and stews. When I roast chicken, I season and then add a lot of water to the roasting pan (about half-way up the raw chicken), and then cover the top of the pan with foil or the lid, and cook at 350 degrees for the usual amount of time (an hour to 1.5 hours), keeping an eye on the chicken to make certain it doesn’t get close to burning. The chicken comes out tasting great! Fall off the bone delicious. I cook enough for leftovers, so that I’m not cooking all the time. On nights when I don’t have time to cook (or haven’t planned ahead) I slow-fry farmer’s market eggs in grass-fed butter on my cast-iron skillet. I simmer all the way through, carefully turning over when the eggs are just done enough to turn. No brown–front or back — and delicious. You can also boil or poach your eggs, as this is easier! (just love those fried eggs) 🙂

5. I’m gluten free all the time. I’ve been doing this for so long it’s not a challenge. I just about never eat bread,but do keep gluten free bread in the freezer for emergencies. I’ve found that if I eat even the gluten free bread twice in one day I get mouth sores! This is a message from my body to stay away from processed foods!!! I will make that it’s own number:

6. Do NOT eat processed foods! It’s poison, even the organic so-called healthy stuff (see GF bread above). It’s okay on a rare occasion, particularly when you’re with other people. but try to avoid this on a regular basis.

7. Exercise regularly. Your body was meant to move. Exercise as much as you can and as often as you can. I’ve never been athletic, but even I can exercise. I rebound, sprint on the elliptical, and lift weights at least three times a week. Rebounding is bouncing on a mini-trampoline. This is great for CLL as it moves the fluid through your lymph system. If we’re sedentary, the lymph doesn’t drain, which is not good. So bounce several minutes a day at least. Gentle bouncing works as well as high bouncing (and doesn’t jar your body so much). Sprinting means I go as fast as I can 30 seconds out of every two minutes I’m on the elliptical. I don’t recommend the treadmill. It’s more boring (to me) and too many people have been injured on it. I’m thinking of a co-worker, Sonia, Harry Reid, and also the Facebook COO’s husband. No point in taking good care of yourself and then risking your life while exercising, no?

8. Choose your supplements wisely. I probably take too many. Supplements are like advertising. You take a lot of them and they work; but you’re not sure which ones are working! Here are two of my favorites: (not going to include my entire list, as some of them are to preserve my hair as I’m one of the 1/3 of women who experience hair thinning with age; also take a lot for natural thyroid care and heart health. Not all my issues are CLL-related).

A. Peak Immune (by Daiwa) ~ has been a life saver, possibly literally, in keeping my neutrophils at an acceptable level. I’ve actually inadvertently done a double-blind on myself with this pill. When I take it, my levels are good. When I stop, after a few weeks or months, down they go. If your neutrophil level is fine, don’t bother with this pill as it is expensive.

B. Vitamin D3 ~In recent years, this vitamin has been shown to be a potent anti-cancer product. See this vitamin D3 article. Is my good health due to the fact that I’ve been taking 8,000 to 10,000 IU/day, in divided doses for years now? The point is to keep your level, measured in the vitamin D hydroxy test at 70 – 100 for cancer control.  My level varies between 79 and 102. (Nothing bad happened when I slipped above 100; I just reduce the dosage for a while.)

9. Get at least 15 minutes of natural sunshine in the peak time of the day during the summer months, despite what your dermatologist might say. Just don’t burn!!! Otherwise you are gathering up natural vitamin D the way Mother Nature intended.

10. Bone Broth Soup. (Okay, this is out of order here, but bear with me.) Boil beef bones and chicken soup bones (with and without meat) simmering for 24 – 48 hours. Store in freezer in portioned jars. The soup  should gel when refrigerated. This will provide cancer-fighting nutrients. There is a whole book on this subject by Sally Fallon of the Weston Price Foundation.  Go to their web site for more info: Weston Price Foundation.

11. Coconut Oil and other Fats. After all these years of being told to eat less fat, it turns out these saturated (and other) fats are healthy! You’re supposed to eat at least three tablespoons of organic, UNrefined coconut oil/day, possibly six tbsp/day — all in divided doses to keep the level in your body even. Coconut oil is an anti-pathogen, meaning that it kills bacteria and other germs. This supports your immune system in its fight against the CLL cells. More of your immune system is available. Butter (not margarine, which is a fake, synthetic food) is also healthy and if recommended for every day use. Take care not to overdo. I LOVE coconut oil mixed with toasted carob powder, and tend to overeat this, which tends to make me put on weight… so watch your quantity. You can get too much of a good thing.

12. Alkalize.  Every morning I have a 16-oz glass of filtered water with 2 tbsp ACV (apple cider vinegar) and 1 tbsp organic lemon (my husband juices the entire lemon to make use of the d-limonene in the peel, which is also supposed to be anti-cancer, but you don’t have to do that, of course). At bedtime I have a 12-oz glass of filtered water with 1/4 to 1/3 teaspoon baking soda. These drinks help keep my PH at about 7, which is desirable for preventing and treating cancer. The other good news, you are pre-, post-, or just plain menopausal, is that, at least for me, the baking soda before bed has eliminated hormonal night sweats. Yay! Easier to sleep. Measure your PH level with strips you can buy online or at your local healthfood store. My favorite online supplement/health item source is iherb.com. Very reliable and reasonably priced. (Please note that I am not an affiliate; this is an absolutely NOT for profit site.)

13. Blood test regularly. I really don’t like going to the doctor. I really don’t, especially not to the hematologist where I get to see people getting chemo, and a lot of sick-looking people in the waiting room. It is demoralizing! So what I do is I pay out of pocket for blood tests between visits (which are getting farther and farther apart). I go to Direct Labs and order a CBC and whatever else I think I need. (I have anemia and thyroid issues — and hair issues — as well as CLL.) You place your order online. It lets you know what location(s) local labs are available. You print out your order (requisition is emailed to you), take it to the lab, get the test, and in 24- 48 hours, most test results are available. In my case, my co-pays and deductibles are so high these days that it makes sense to pay out of pocket. If I became concerned, I would go to the doctor. (Just saying.) But in my case it’s been a great way to keep score and get an idea of what’s working and what isn’t. I also mail a copy of the results to my hematologist so we can be literally on the same page.

I guess I will end at Lucky 13. Please post comments on this and other pages, and I promise to get back to you. If you’d like a more personal communication, I can be emailed at cllalternatives @ gmail.com (no spaces). Wishing you good health and peace! – Denise

 

 

 

 

 

 

CLL Update August 29, 2012

There is a reason there are so few posts on this blog.  Initially I was positive that I could totally reverse my CLL diagnosis.  This hasn’t happened — yet.  My plan for this blog was to be an uplifting, upbeat place for people with CLL (newly diagnosed or those trucking along like me) to get a positive feeling.  To get hope and inspiration.  I have to admit I’ve been discouraged more than once since starting this blog.  But…. I’m still here, and I still have NOT had any conventional treatment — even though it has been recommended.  I’ve managed to turn the ship (to use a metaphor), but I haven’t yet been able to get the ship back to shore.  It’s been eleven years, and truthfully, I’m doing fine, and living a relatively normal life.

My last problem was with my Neutophil count, which about a year an a half ago were dangerously low.  That was when my hematologist was recommending Rituxan and Neupogen.  I didn’t want the Rituxan because I looked it up on Google, and apparently it doesn’t work well without a jumpstart from some chemo (perhaps a little bit of chemo?), so I said no thank you!  The same for the Neupogen.  Neupogen comes in a shot, which you apply yourself to your stomach regent — twice a week.  If that wasn’t bad enough, I looked that up as well.  Neupogen does increase your Neutrophil count, but it causes your body to stop making its own.  Eventually you need more and more frequent shots.  This did not sound like  a good plan to me!

So I conferred with my son, a Nutritionist, who suggested that I take several bacteria-, virus- and fungus-fighting herbs.  So I started on a heavy-duty regimen of Olive Leaf, Pau D’arco, Coconut oil, and Goldenseal.   This helped.  The next time I had a blood test, my Neutrophil marker improved.  After that, I decided to start the Ultraviolet Blood Irradiation treatments at the Wycoff Wellness Center in East Lansing, Michigan.  Prior to this time, I’d heard of it, but was frightened of the process.  They withdraw blood, add a little heparin, and then the blood is returned back into your vein, after it passes through a machine that treats your blood with ultraviolet irradiation.  I have to admit that it sounded scary, risky even.  But now that it’s been more than a year, I have to say that it most likely has been a factor in keeping my Neutrophil count closer to normal.  I get no more warnings and I’m back to being tested everything 4 months (rather than monthly).  The people there are wonderful!  It isn’t scary at all, or risky.

So while I have not yet effected a complete reversal, I can confidently say that I am stable.  I am much more consumed by caring for my ailing parents than I am in thinking about my diagnosis.  (I don’t “have” a disease, I have a diagnosis.  This is a comfortable separation in my mind.)  I’m planning another trip to Texas for another nephew’s wedding.  And perhaps I’ll change the picture in the About section.  I’m not taking the time now to illustrate this post because I am busy.  I’m well, thank you very much.  But I’m working part-time, taking care of my parents part-time, and trying to squeeze writing a book into my spare time.  Oh, and my husband and I are getting more and more into the raw food diet.  (I really have to write this thing more often.)

If you are dealing with the emotional toll of CLL and you want to write me, please do!  I always have time for that.  You are my number one priority. You can contact me through this website/blog in the comment section, or email me directly at cllalternatives@gmail.com. Think happy thoughts and be well. – Denise

CLL Alternative Protocol

Here is the list of what I take and what I do, at this time in my life (it has changed many times) to be well and get well.  My goal is, and had been, since July 2005, to become cancer-free.  Others have done it and so can I.  (By implication, you can too!) There is no one path.  Unfortunately, we all have to find our own formula.  While that sounds daunting, to me it’s a heck of a lot better than counting on one professional who will give you fifteen minutes of his or her time, each visit.  You can give yourself as much time as you need!  Be your own health care advocate, and you can spend an hour or more EVERY DAY on yourself.  There isn’t a doctor alive — conventional or alternative — who can do that for you.  You can only do that for yourself.

Between Meals
(before breakfast, mid-afternoon, before bed)

  • Univase Forte enzymes, 6 total,  2 pills/3X a day
  • Apricot Seed pills (grind and make myself) 4 pills, 3X/day btw. meals
  • Natural Thyroid 60mg, 1X, 1/2hour prior to breakfast
  • Wheatgrass Juice (I grow and juice my own) 4-5 ounces, every morning 1/2 hour before breakfast
  • Low Dose Naltrexone 4.5mg, before bedtime

Breakfast

 

  • Actifolate 800 mcg
  • Magnesium 200mg
  • B Complex 1 pill
  • Black Currant Seed Oil 1000mg total – 2softgel
  • B-17 Laetrile 500mg
  • Vit C 1000mg
  • Bioflavinoid 1000 mg
  • Vit E 200 IU softgel
  • D3 1000 IU softgel
  • CoQ10 50 mg ubiquinol (not ubiquinone)
  • Primrose Oil 1300 mg softgel
  • Calcium 250 mg
  • Probiotic 1 gram 20 bill organisms, 12 strains
  • Broccoprotect 1
  • Regenemax (5mg silicon) 1
  • Reduced Glutathione 300 mg
  • Iron Pill (Iron Glycinate) 29mg, 4X/WEEK (every other day)

Lunch

  • Vit D3 1600 to 2000 IU dry (Twinlabs Allergy D)
  • Potassium 99mg
  • CoQ10 50 mg unbiquinol (not ubiquinone)
  • Zinc Asporotate 15mg
  • Iodoral 25mg
  • B-17 Laetrile 500mg
  • Selenium 200 mcg
  • Grapeseed Extract (every day @ lunch, one month on, one month off)

 

Dinner

 

  • Magnesium 200 mg
  • B-17 Laetrile 500 mg
  • Fish Oil 1000 mg (Omega 3,5,6,7,9)
  • Curcumin 665mg
  • CoQ10 50mg unbiquinol (not ubiquinone)
  • Vit D3 1000 IU softgel
  • Primrose Oil 1300 mg
  • Calcium 250 mg
  • Joint Ease (glucosamine 250mg, chondroitin 250mg, queritin 250mg, taurine 250mg)
  • Vit K2 100 mcg (bone health)

 

Immune-Boosting Butter
1tablespoon/day (more if I want an extra immune boost)
Recipe:

  • 1 stick room temp organic butter
  • 1/2 cup organic cold-pressed virgin olive oil
  • 10 capsules probiotic
  • 10 capsules colostrum
  • 6 capsules l glutamine
  • 1 tablespoon raw honey (local)

Empty capsules into a bowl.  Add olive oil, butter and honey.  Blend with immersion blender (that’s what I use).  Cover and refrigerate.

D’Mannose
I use this, as needed for UTIs (urinary tract infections).  This has been, quite possibly, a life saver.  While I still carry a prescription for antibiotic in my wallet, I rarely, if ever, use it.  This deserves a page of its own.

Diet

  • NO sugar
  • NO gluten
  • NO white bread
  • NO refined salt
  • NO processed foods
  • NO store-bought baked goods
  • NO nuts or seeds (unless powder-fine or smooth paste

What I DO eat:

  • YES Organic greens
  • YES Organic vegetables
  • YES Organic fruit (small amount/day)
  • YES Organic grass fed beef
  • YES Organic poultry
  • YES Organic free-range eggs
  • YES Wild-caught salmon and other fish
  • YES Organic olive oils and other oils
  • YES Sprouted lentils, grains
  • YES Almond butter
  • YES Rice Cakes
  • YES Oatmeal
  • YES Organic butter
  • YES Raw milk yogurt
  • YES Greens/Fruit Juice in my Vitamix

It IS hard to eat out, but I manage.  I mostly try to limit eating out of the home to two times a week (total, includes lunch AND dinner).

Exercise
I walk my dogs every day. I exercise for 15 minutes 3X/week on our elliptical trainer.  I lift weights 3X/week for my osteoporosis and heart health.  I can now run up a flight or two of steps without getting overly winded.  Couldn’t do that 10 years ago.  It pays to exercise!

Sleep
My goal is to be in bed by 10pm, and to get at least 8 hours of sleep each night.  I feel wonderful when I achieve this goal.  I’ve read again and again that the sleep before midnight is the best healing sleep. It makes sense.  Try this.  It is one of the best things you can do for your immune system and your health.  It’s free -  and you can feel the results literally overnight.

Mindset
Don’t worry.  Be happy. I know they have studies to prove it, but who need studies?  We all know we feel like crap when we stress out and worry.  Racing pulse.  Palpitations.  Bile in mouth.  How good can that be for you?  The experts tell us to meditate.  I’ve tried it, and it always feels weird to me.  I prefer writing in my journal or reading something relaxing.  Either one gets me away from myself, and helps me to relax and stop stressing.

That’s it for now.  I think that you can see that it takes a lot of time, effort, not to mention cash, to take care of yourself.  Whatever I’m doing is infinitely less expensive than chemo treatments.  None of it has side effects.  And I feel great.  Please write with any questions.

Due to an unreasonable amount of SPAM, I suggest that you email me at info(at)cllalternatives.com if you can’t seem to get a comment posted.

CLL Leukemia Diagnosis: Overcoming the Fear

fear

Now that it’s been over nine years since my diagnosis of CLL leukemia, I have to say that my mental state is quantifiably better than it was July 2001, when I first had to deal with it.  It helps enormously that I am still stage one, and have remained “steady” without the help of any conventional therapies.  Not a drop of chemo.  No prednisone.  This despite many harrowing brushes with low platelets, dropping red counts, rising white counts, hematuria (blood in urine) and other freak-out factors.

Like many CLL diagnosis “victims,” I experienced sadness, grieving, easy tears, insomnia, and morbid thoughts. At one point, I even started thinking carefully before investing in something lasting like, say, a leather coat.  It might be “wasteful,” I thought at the time.  After all, I wasn’t sure how many seasons I’d be around to enjoy it.  I was overcome by negative thoughts and FEAR.  Fear of dying.  Fear of death.  Fear of leaving my family behind.  This made me overwhelmingly sad.

How I overcame fear: Action! Once I realized that I could not and would not count on medical doctors to keep me alive, this truth set me free.  Once I started to take charge of my health, doing all the things you can read about on this site (and elsewhere), my mindset changed.  It started with my macrobiotic diet (which I ironically no longer follow) that I felt a sense of calm and peace.  I started to know in my heart that I was going to be fine.  I was planning to live.  That was in 2005.  It is now nearly the end of 2010 and I’m still here, living my life, doing what I have to do to be well.  But I am also quietly and calmly confident that I am going to be “here” for a long time.

The first step to wellness. So if you are depressed, worried, fearful, or in any way devastated about your CLL leukemia diagnosis (or that of a loved one), take heart!  You don’t have to curl up into a ball of worry.  There are things that you can do.  The more things you try (and measure with frequent blood tests) the better your chance to prevail.  Saying goodbye to fear is your first step on the road to wellness.

Due to an unreasonable amount of SPAM, I suggest that you email me at info(at)cllalternatives.com if you can’t seem to get a comment posted.