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
9 Responses to "CLL Book…Taking Topics"
July 27, 2018 at 10:31 am
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
July 27, 2018 at 2:56 pm
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
July 25, 2018 at 8:44 pm
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?
July 27, 2018 at 3:18 pm
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
July 23, 2018 at 12:48 pm
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
July 23, 2018 at 3:29 pm
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!)
August 27, 2018 at 8:03 pm
Hi Denise,
As I sit here drinking my amazing trio of wheat grass, barley grass and alfalfa, (as I do everyday) I also wrestle with myself everyday on how much stricter I’m willing to be with what I eat. Let me explain – Since my diagnosis, just prior to last summer, I’ve stepped up my nutritional intake exponentially – many supplements, vegetables, greens, foods with probiotics, major cutdown on sugar and chocolate etc. etc. etc. Yet I seem to have a limit as to how much more I’m willing to do even though I beat myself up for not doing enough. How much more am I willing to sacrifice some of the foods that give me pleasure? How many salads can I eat over that corn beef special that I’ve been dreaming about for the last six weeks? How many times when I’m walking through the supermarket and accidentally (haha) find myself in the bakery, eyes bulging & mouth watering, passing up those beautiful pies, cakes and donuts? I’m sure the bakery employees see me coming and say, “here comes that slobbering zombie again, when will he actually bye something?”
This is my ongoing challenge – my love of foods that are not great for me. 85% of the time I suck it up and move on, but, that 15%… I don’t know how much better at this I can actually get. Maybe we each have our own tolerance level. I don’t know.
I’d like to hear if you or others are dealing with this too.
Thanks,
Mike
September 3, 2018 at 2:17 pm
Hi Mike,
You pose a very important question! And believe me, despite the fact I’m able to be a frickin’ Girl Scout about 95% of the time, I, too, sometimes waver. The way I handle this challenge is to try to always have a substitute food that becomes my new “guilty” pleasure. For example, you mentioned chocolate. Prior to my health problems, I ate chocolate every day. That’s: Every. Day. Ditto for coffee and other rare treats. To substitute for chocolate, I’ve had almond butter (sometimes in larger quantity than I’d care to admit), later I moved on to carob bars (see my site for the recipe), and then carob became a problem, and I went into a tailspin. Yes, I become cranky when there isn’t a go-to food that I LOVE to eat.
So after trolling the Internet for appropriate (for me) recipes, I came across and altered a cococnut cookie recipe which is delicious, satisfying, and unfortunately (for me) causes gastric distress (severe stomach ache) if I eat it in excess. So plan D (or is it E or F?) is to put some almond butter on one of my coconut cookies and eat it slowly. Very. Slowly. This is working for me now.
But that’s just my dessert issue. I like to enjoy my food all day long. So I’ve developed a smoothie that I LOVE to eat most mornings, and a weekend breakfast of either vegetable-miso soup (trust me, it’s an acquired taste and it’s DELICIOUS) or cream of rice (home made) with fruit, pumpkin seeds and grass-fed yogurt. (This breakfast is something I look forward to all week!
Okay, if this still doesn’t sound appealing, keep this in mind: it gets easier over time, especially if you are seeing positive results when you have blood tests or visit your doctor! Trust me, this is so true. So the solution is to seek out favorites within the realm of what is good for you. For example, I have an issue with high-oxalate foods. This is probably not true of most CLL diagnosis holders. So my diet might be (eek) even more restrictive than yours. One thing I can tell you is that I am able to tolerate more fruit than is recommended by alternative practitioners. I just keep the ratio of vegetable-to-fruit at about 80-20 (or 75-25 on a hungry day). Keep to organics, put in in your smoothie, along with those greens or organic, in-season veggies, like zucchini at this time of the year. It IS delicious.
In short, experiment till you find new favorites. I used to be sad about not going out for ice cream… or frozen Cokes. (I think the 7-11 people knew me by first name, back before I started working on my health for real). I missed the ice cream trips not only for the ice cream, but because it was a fun social thing to do. It took years, but I’m over it now. I can have friends over and serve things I woulnd’t eat…but I also have things I DO eat, and enough for everyone, so I don’t feel secluded.
It takes time. Let yourself cheat now and then…once a week, or really better would be once a month. When you develop the favorite substitutes, the desire to cheat will lessen. You might also discover that you don’t feel so good when you eat food you shouldn’t. (stomach aches, mouth sores, hives, I’ve had them all.)
thanks for writing about this. It’s an important topic. I hope this helps. Check in now and then and let me know how you’re doing — in general, and about this issue.
Now go and search for some substitutes!
Wishing you all the best of health!!! – Denise
PS These is a lot more to say about this topic. I will be thinking about it… making notes, and most likely making a post on this site, and a chapter in the upcoming book.