CLL Alternatives

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

 

 

 

7 Responses to "CLL Book…Taking Topics"

Hi Denise,
What a great picture! I’m sure your grandchildren keep you busy & happy.
Your postings have been nothing short of incredible. They gave me answers to “everything CLL” and I’ve found much comfort in your approach.
The time, energy, trial, error and caring you must’ve gone through in your endeavors to find answers and share all of this with us is very much appreciated.
In an effort to contribute to your forum I’d like to share something I lost but also gained since learning of my diagnosis in May 2017.
This probably fits into your category of “Managing the Fear of a CLL Diagnosis.” — I don’t feel immune to disease anymore. The young man omnipotence has slowly drifted away although at times I feel it in the distance. Thus I’ve had to face my mortality and the mortality of those I love. This can be scary, but what I’ve gained is a self invitation to liberate my mind from some invalid beliefs that I’ve held onto for years, or cared too much about. I decided to explore this because I want to enjoy my life as unencumbered as possible. I believe I’m hitting on some things that i may not have explored without this diagnosis. It’s a weird kind of a phenomenon but, my mind is clearer now and I feel more energized then I did before I found out about this CLL diagnosis. This is all an ongoing process.
I look forward to your book and more of your super postings!
Mike

Hi Mike,
Thank you so much for writing! I’m so glad my posts bring comfort, because that is exactly why I spend time on this site. I want it to be everything I would have loved to find back when I was first diagnosed (and the few years following, when I was still a wreck). I truly agree with what you write…the flip side of facing your own mortality is to appreciate the time you DO have on earth. I’m always hoping there’s more on the “other side,” but we never know if thats’ more than a hope. So our only option is to maximize our time while we’re here. I lost my mother last year (2017) and my dad in 2014. Neither death was a shock, but it has shifted me into being the oldest generation, so I’d probably be thinking these thoughts nonetheless.

But what I’ve gained is the ability to take all the special things I do, eat, don’t eat, take, the accommodations I make for myself, etc., etc., in stride. (Most of the time; sometimes I’m a baby and just get frustrated like any one else.) But I strive to always appreciate that fact that I’m still living and living quite a normal life at that, seventeen years after diagnosis. I do agree with you that it’s scary not to feel invincible, and to feel how temporary it is for ALL of us. And I also agree that this leads to us looking at what we do every day, and making up those inevitable “bucket lists.”

It sounds like you’ve come a long way since diagnosis. It took me about 4 years before I got down to business and really worked at my wellness. I’m truly lucky I had the time to get my act together. (Of course, I didn’t see it that way at the time.)

I think your thoughts are perfect for this book. Wishing you the best of health!!! – Denise

PS Yes! My grandkids keep me and my hubby very busy. We’re lucky they’re all local. (And don’t tell anyone, but one of our two d-i-law’s just announced another one is on the way. Clear the calendar for babysitting!)

Denise,
Even though it sounds like your parents death wasnt shocking, it’s still tough losing mom and dad.. Must’ve been a few tough few years. What a great thing to have your grandchildren close and a supportive spouse. My wife is also very supportive. I feel very lucky about that.
Glad you’ve been such a trailblazer. Do you remember when and how you wrapped your brain around going the alternative route?

Hi Mike,
Thank you for understanding about my parents. The last few years of my 50s were spent largely in doctors’ offices and in the hospital. It was so intense. I’m now 63, and I miss my parents so much now because I’m back to thinking of them as who they were when they were young (enough) and self-sustaining. I think of them both every day. And yes, my husband has been a rock, and for that I’m very grateful. I’m glad you have a supportive wife. Not everyone is blessed with a good partner, and it’s very hard to make it all work without one. And grandkids are great. It seemed to all happen at once.

Now about your question about how I started going the alternative route…it was a process. I used to be, like many people I think, terrified about doing anything that wasn’t under the auspices of conventional medicine (which I didn’t think of as conventional at the time; I thought of it as seeing a valid doctor!) It seems to me that one thing led to another. First I tried what I call the “anti-cancer diet” that I learned about in a book by Patrick Quillen. It didn’t work. My numbers got worse. I was taking lots of supplements, but still my numbers got worse. Then I discovered Macrobiotics. My husband and I went for a week-long live-in class at the Kushi Institute in Massachusetts. I started the diet by reading two or three books prior to the class. When I was tested, my numbers had dropped down to where they’d been when I was first diagnosed. This was astounding, and for the first time in four years I felt like I had some control in my life. Before that I was a slave to going to the hematologist, feeling like I was at a lethal wheel of fortune every time. It was a hideous way to live. I was even seeing a psychologist as I was crying often and very depressed (which the hematologist told me was bad for my health). I did well with the Macro diet for 2.5 years, and then my numbers started to get worse again. AT this point I felt like there had to be more that I could do. I was still going to official doctors at the time (still do, but not exclusively). I’ve probably been to about 10 alternative doctors over the years, one in New York, and an alternative (biologic) dentist in Houston. (I live in Michigan.) I’ve learned something from everyone. I remember thinking at one point that it was terrifying to realize that the hematologist was not going to be the one that made me well. They didn’t have a cure, and their treatments were debilitating and could possibly hasten death. (There are better treatments now, but I’m still staying away from them for as long as possible.) Once I decided that “if it’s to be…it’s up to me,” I’ve been a happier person. It’s HARD to get to that point, and I don’t expect everyone to get there with a snap of the fingers, or by reading my blog. But I really want to help people see that they have more power than they think. Yes, Mike, this is a very important question, and I really want to write a chapter for this in my book.
Thank you so much for writing !!!
Wishing you the best of health, Denise

Hi Denise,

You have a super commendable resolve, if you can convey that

in your future book so the reader can acquire that resolve as well

then it’s sure to be a winner.

God Bless, Chip

Thanks, Chip. Yes, I am very determined. It’s helped to keep living year after year. : )
And yes, that will be an underlying theme in the book: CLL IS a DIY project. A Do-able DIY!!!
To me, it wins if people can read it and get hope and confidence to take charge at home.
All best, Denise

What I meant by “resolve” was that you have an intelligent
well thought out plan of action to solve your CLL dilemma.
And Yes you are also obviously determend to carry out such a plan, which is also super commendable!
Best, Chip

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