It’s been two years since I posted a CLL update. I’m still alive and relatively well. The picture above is a current snapshot of my six grandchildren, all of whom I’m grateful to be with! Twenty-two years ago I wasn’t so sure I’d get to see my sons married, let alone have children. (Please note the Pesticide-Free lawn sign behind them; I distribute these throughout our neighborhood, but I digress.) I’ve neglected this site, but I’m writing once again because despite the fact that I’ve not had any conventional treatment, I have had issues, and I’d like to share what I’ve done about these issues in case it might help you in your own CLL/life journey.

Back in April I had a comprehensive blood test that revealed an increased WBC (yikes), decreased RBC (double yikes), and lower than normal neutrophils. I might be making light of this now, but it was anything but light at the time. First of all, it came at a time when I was dealing with several weeks, maybe months, of depression. Like most normal humans, I have issues. Lots of them. I’m normally a fairly upbeat person, but… My husband was dealing with a long case of shingles. I was dealing with a rambunctious (and difficult) new puppy, and there are other more personal issues I won’t get into.

As it turns out, the general advice you hear (and that I’ve given myself) is that in addition to diet and supplements and seeking out the newest and latest alternative treatment, a very basic pillar of our health is to find your joy via meditation (relaxation, reading, journaling, etc.). Just as important is getting a consistent good night’s sleep. (I could write a whole article about sleep, and maybe I’ll start posting more than once every two years and write it!) But let’s get down to the nitty gritty about WBC, RBC and neutrophils.

1. WBC White blood cells. My count climbed. Not enough to concern the doctor, but it concerned me as I’ve been stable since 2013, a decade! And I wasn’t interested in starting a decline. I went from the high teens up to just about 30. The next test I was a bit over 30. Oddly enough, this caused me to lose my depression and get back to work on my health.
2. Platelets. I rarely have normal level of platelets, but they are usually above or at least close to 100. They dropped to 80
3. RBC Red blood cells. I have historically had a low RBC (anemia), but it dipped even lower. I don’t recall the exact numbers right now, but they were as low as they’ve ever been.
4. Neutrophils. Also lower than usual; in fact, out of the normal range. (My neutrophils are generally normal even though my neutrophil percentage is, once again, always low.

So what did I do?

1. For platelets I did some research and ordered papaya leaf extract, which did make for some improvement at my next blood test, where it was up to 90. At first I bought the large bottle you take with a spoon (yuck) and then switched to drops that you put in fruit juice (or that I put in my morning semi-smoothie.) Further research revealed that some of my supplements are blood thinners and I have at least temporarily cut back on them. (Omega 3 krill oil, vitamin E comes to mind. Also reducing vitamin D3 back to 5000 IU/day)
2. For my RBC/anemia, I started to take chlorophyll drops (Amazon/iHerb, etc.), also into the fruit juice or semi-smoothie. (Semi-smoothie is all the ingredients stirred in a bowl rather than mixed in the Vitamix. Delish!) So far, RBC has been improving as well.
3. Neutrophils. I was already taking OM mushroom powder, but I added at first Maitake D Fractions, and after that bottle was finished, I added Maitake powder which I’ve found at Walmart online and on Amazon. My neutrophils returned to normal. Yay!
4. I’ve added more probiotics, Dr. Ohirras, a women’s probiotic, another one from Costco and I ressurected a bottle (new and still good) from my cupboard from Dr. Gundry.
5. With all these changes, my WBC also dropped a bit. (I want it to drop more, but I’m currently in my be-patient mode.)

All these changes have made a difference. In general my numbers have all mostly improved. I will test again in September (October the latest) to see how I’m doing.

Other changes?

1. In addition to working at our family business about 25-30 hours a week, I’m a poet and writer. I had decided that enough was enough and I stopped writing. Hence the depression. (How thick am I! I should have known that was perhaps the major cause of my depression.) Once I decided to start writing for “fun” again, my depression totally lifted. Weirdly enough, or perhaps appropriately enough, two publishers reached out to get permissions to print one each of my poems in upcoming textbooks. Trust me, this is not a living, but it IS gratifying. And I had already given up on this. Duh.
2. Sleep, always sleep. I make a bigger effort to get into bed by 10 or 1030 which makes it less likely to have insomnia.
3. I shared my troubles with Jay Blatt, another CLL buddy who has a great Facebook page (CLL Survivors and Thrivers) and he made many helpful suggestions, some of which I’ve shared above.

So, in this age of disclaimers let me remind you that I’m definitely not a doctor or a medical professional. I am a woman who was diagnosed with CLL 22 years ago and who has managed to be well with minimal medical intervention (only took IGG infusions for a Covid episode). This is not medical advice; it is a sharing of my experiences. To be honest, all of us are different. If you make any changes be sure to get tested or seen by a medical professional at least once a quarter to make certain that you’re on the right track, and that your changes are helping and not hurting your health.

If feels good to be back here sharing once again.

Wishing you the best of health! – Denise