Out of the Closet: When to Tell Friends and Family about a CLL Diagnosis
Posted by: Denise on: November 11, 2017
For whatever reason, when I was first diagnosed with chronic lymphocytic leukemia by my original hematologist, he advised that I keep the news to myself.
“It’s stage zero. You have no symptoms; you look healthy. So there’s really no reason to tell everyone you know—unless you want to.â€
Unless you want to.
I had no idea what I wanted. I honestly didn’t even believe I really had CLL until my follow-up visit. I was totally expecting them to test my blood and apologize for their mistake. And I knew what I would say to that. “Thank you! God bless you! No harm, no foul.†And most of all… “Good bye!â€
Of course, that didn’t happen.
But back to the issue of what and when to tell people. Now that it’s been sixteen years, as of this writing, I’ve learned that most people tell everyone everything. From day one.
But not me. I told my immediate family and one special friend and her husband. I could tell by her husband’s response that he felt like he was talking to a doomed woman. At that moment I knew what I wanted, and that’s what I did for nearly fifteen years.
I told no one.
I felt safe in my anonymity. I told myself I would share my story when I started chemo. At the time, I was positive chemo was inevitable. In 2001 if you look up “CLL†or “chronic lymphocytic leukemia†on Google, the news was not good. It was all about the Rai or Binet stages. And while I was low on both, all the attending information was not encouraging. Even the brochure from the hematologist was a colossal downer. The last section was about end-of-life decisions. How’s that for encouragement?
I didn’t want everyone to think of me as a dead woman, so I kept my mouth shut and swore my family to secrecy. I kept it that way for a long, long time. For years, actually.
It wasn’t until November 2011 that I started CLL Alternatives.com at the urging of my husband. He said it was time to share my story with other people. I wasn’t keen on that idea because I wasn’t ‘cured’ yet and, at the time, that was my personal benchmark. I wanted to be cancer free.
The reason for this benchmark: I’d been reading a site by a man with CLL who was trying just about every alternative under the sun, including artemisinin. Unfortunately, his final entry was a farewell post. His CLL was fatal, his body was riddled with cancer, and he didn’t have anything to add to his site. I was horrified. For him. For myself. I didn’t want to start a site to do that to others.
But still…by 2011 I was already ten years into this thing and it appeared I wasn’t about to sign off just yet. Not only that, I’d been actively researching and trying out alternatives and changing my lifestyle—and seeing results! So I felt I did, in fact, have something to share. So I started my web site, bringing me out of the closet, albeit anonymously. And ironically.
But slowly, some time around 2013, I started telling friends, one at a time. At first it made me uneasy, as if telling my tale would somehow make it more real. And lethal. But things had changed since 2001. A lot of people I knew were living with cancer. It wasn’t quite the sudden and immediate death sentence it had been.
So I told more friends, one by one, especially and always those who had or were close to someone who had a diagnosis. At this point, it couldn’t make the diagnosis any more real than it already was. And it certainly didn’t make the course of the disease any worse. In fact, by 2013, my WBC (white blood count) started to drop as a result of starting a raw food/low temperature-cooked food diet.
At the time of this writing, after sixteen years of living with a CLL diagnosis, I believe I’m out of the closet. I’m Denise and I have a CLL Diagnosis. Here is an important point: because of Hessel Baartse’s web site and story, I’ve learned to refuse to say that I “have CLL.†No. Instead I say I have a “CLL diagnosis.†This separates me from the illness, and I enjoy every degree of separation!
So what should you do if you are newly diagnosed? To tell or not to tell? My answer: it’s entirely up to you. I’d go with whatever feels right. For me, I needed the cushion of years—and wellness—before I could share my story with my in-person friends. I’m so glad my husband encouraged me to start CLLAlternatives.com because I’ve made so many friends, and so many valuable connections. And if I’ve helped a lot of people along the way, well, that’s kind of the point.
11 Responses to "Out of the Closet: When to Tell Friends and Family about a CLL Diagnosis"
January 21, 2018 at 9:39 pm
Thanks Denise. You are kind indeed.
I am not joyed with the results but it does not bother me that much. Just wanted to update you and your readers. I have been doing many things including low temperature cooking but nothing seems to have worked so far. The other issue I mentioned is low kidney filtration. It has become worse over the last few months. I am not sure if the they are related. Probable not. My feeling is that both issues are the results of excessive antibiotics that was given to me for bronchitis/pneumonia over the years. Irony is that it could have been cured with chicken broth and herb-potion I mentioned earlier.
Good news is that everything else is normal. When I went for the test I had requested 25-Hydroxyvitamin D evaluation. Other results are posted on the net but the D-25 results are pending. I will let you know when it is available to me.
I wouldn’t know where to buy CBD oil. It is not freely available here.
And, once again thanks for your help and moral support. I will keep you posted and in the meantime if you have any idea please do post. Most probably I will not go for conventional treatment even when suggested. So far I have not been asked to take any “medication” yet.
Cheers and best of health.
January 20, 2018 at 4:08 pm
Hi Denise.
I live in Toronto area and it has been quite cold here.
I fully agree that some of these ancient cures are true cures as compared to chemical balancing to cure the symptoms. But, then as you say alopathic medicine has its own place.
Just to let you know that I had another blood test. Again the wbc count has gone up. In my case it has NEVER come down. It has been consistently been going up. Every test shows higher numbers. Tests indicates that there might be some other issue as well, not sure whether it is relatedto cll.
I have a question for you. How long does it take before cooking at lower temperatures shows results? I have now been on that diet for a few months but then last month has been bad with the cold, and no exercise at all. Hopefully, I will be able to start walking again.
You take care and I wish you the best. Regards.
January 21, 2018 at 11:00 am
Hi Vin,
I’m sorry about your WBC results.What is the “other issue” you’re referring to? About the WBC, mine also seemed to go in an upward trajectory until I was at 47 (47,000). At that time I went on the low-temp diet (which I remain on to this day) and it dropped to the low twenties in three months, and with added efforts has gone into the mid-teens (and back up into the low 20s, and back down again). So this worked for me and it is evidently not working as well for you. The good and the bad news is that what works for one person does not necessarily work for another. Bad news because it’s frustrating to try something that worked for someone else and find that it doesn’t work for you! But, the good news is that something else might very well work. (And in my opinion, I would stick to the low-temp diet, as cooked food DOEs raise your WBC, and perhaps yours would be worse if you weren’t making this effort. Again, just my opinion.) Here are a few suggestions about what else you might try at this time:
1. Ramp up eating fermented foods. Either make your own (much cheaper) or buy in the refrigerated section of the supermarket. It’s easy to make your own. 1 tablespoon sea salt to two cups filtered water for the brine. Cut up vegetables (start with cucumbers; they’re easy!) stuff into a clean jar, fill with the brine. Cover, but not too tightly. Put jar on plate or in bowl and set aside for a day or two on the counter. The veggies will “cook” at room temperature, and the brine will expand from what is leached out of the veggies and will spill over the top of the jar and onto that plate or bowl. Taste and recover the jar if not done. When done, rinse jar and put in refrigerator. For more complete info, go to youtube.com. The point of fermented veggies is that in order to heal the CLL, we need to first heal our guts. Healing starts in the digestive system, and our digestive system LOVES probiotics. Yes, the pills are good (and keep taking them). But the fermented food way outdoes the pills. Remember, do everything as close to the way God made it. God didn’t make the pills, but you can appreciate the natural process when you put cucumbers out on the counter in saltwater and end up with delicious pickles. Yum! (and oh, so healthy) Hubby made suggestion here: You can keep tasting and testing the veggies when fermenting. Suggestion: try the perfectpickler.com. That’s what got us started on fermenting many vegetables. It’s like training wheels — with videos and instructions. very helpful. You can also call and talk to my husband, Pete. He does all the fermenting here. Send me an email at cllalternatives @ gmail.com (no spaces) and we can arrange a talking time, if you’d like. (another note from hubby: learning to ferment is a process. Don’t give up if your first batch(es) isn’t so good. It takes a lot of trial and error.
2. Eat orange and lemon peels. Yes! Eat the whole thing, peels, seeds and everything. Cut up and put them in your blender. (Do you have a Vitamix or a Ninja?) and add to a morning smoothie, or start making desserts with this. Add avocado, ice cubes, kale (or other greens), protein powder, and frozen berries or cherries and it will be delish. I’m not telling you this to give you a dessert (or breakfast) but because citrus peels contain d’limonene, an anti-leukemia property. I did start to improve when starting this practice. So buy some ORGANIC citrus and start blending!
3. Bone broth soup. It’s a lot of work, and thankfully my husband does this for me. It is also available to buy (sure it’s expensive). But…I was advised by two different alternative practitioners to have this soup as they had knowledge that it is healing for blood disorders and cancer. There are many good recipes online. There is one on mercola.com. Go to their web site and type “bone broth” in the search box. This is a good one to do, Vin.
4. B-17 pills. I take 1500mg/day (500mg pill at each meal). I’ve been taking them since 2007 and do believe they help. My WBC DID climb while on it, but…as earlier discussed, not everything works as well for everyone. I know of one woman with pancreatic cancer who held it off for about two years with this (and had already taken debilitating treatment). Google it or check out youtube for testimonials. B-17 is apricot seeds (bitter almonds) You can buy the actual bitter almonds at apricotpower.com. Look like almonds and taste like vacuum cleaner bags. (I’ve not personally been able to tolerate this, but many have had good results.) Again Google and youtube for testimonials.
5. CDB extract oil, with THC. (cannibus, marijuana) Okay, I haven’t tried this one as yet. But a friend in her 50s is taking this for stage 4 lymphoma and it doing oh-kay. There are at least two CLL testimonials about this on youtube. Yes, Vin, you are going to have to do some research. But it has been my experience that doing research beats hell out of severe depression and paralyzing fear.
So, pick a favorite and start looking it up online. You might want to try one or two. Or maybe your research will present something else…that might work for you! I was at this for 11 years before the low temp diet and citrus peel helped me. (Currently I’m off the citrus for another problem which has cropped up, but I’m waiting to see how my next blood test goes.)
I know how hard it can be. But I’m sure you’re a fighter or you wouldn’t be posting on this site. I’m here for you if you have any more questions.
Wishing you the best of health!!! – Denise
January 21, 2018 at 3:13 pm
Hi Vin, Two more things…
1. Get your vitamin D3 level checked with a vitaman D hydroxy test. Take enough Vit D3 (inexpensive) to keep your levels at 75 to 100. Taking 10,000 IU/day (divided doses) helped me get to optimal range. I’m now taking about 9000 IU/day to maintain, and I get tested regularly. This definitely helped my WBC and general health! (Don’t count on your doctor’s opinion on this. They will be happy enough with a level of 40 or so, and that’s not high enough when you’re fighting cancer or leukemia.
2. Check out this ‘what to do about cancer’ list at mercola.com
That’s it for now. Thinking of you and wishing you well – Denise
January 13, 2018 at 6:17 pm
Thank you Denise. The cold is now certainly better. I drank the potion I had mentioned earlier eg cloves/ginger/garlic with lime and honey. I also drank a lot of chicken broth (mostly bones), as you had suggested. And, I have recovered without antibiotics.
I was quite young when I migrated to Canada. I went to school in Windsor, just across the river from where you live. I consider Windsor as my “home town”. So, I am quite familiar with Detroit. Has the weather improved?
January 15, 2018 at 11:36 am
Hi Vin,
Thanks for writing! So glad you’re feeling better. Those “potions” are what people had before modern medicine and the pharmaceutical giants came into the picture. (Don’t get me wrong, occasionally I will have a drugstore cure.) And that bone broth is wonderful! Glad that it helped you heal. About Windsor, it’s hard to wrap your head around the fact that Windsor, Canada, is south of Detroit. That said, our weather is roughly the same. We’ve had moderate amount of snow and nearly continuous frigid weather. Right now it’s in the teens, with an expected high of a whopping 23. My dogs HATE it. Their paws freeze up in the cold and snow.
Where about do you live these days? = Denise
January 3, 2018 at 8:43 am
Happy New Year, Denise and everyone else.
I am doing well so far, already about 2.5 years and counting. Denise thanks for some of your recommendations. I will keep you informed as the time passes. So far so good. I feel great except for the cold I have. In fact it has been very cold here.
Take care
January 3, 2018 at 10:42 am
Happy New Year to you, too, Vin! Glad you are doing well, and sorry about your cold. I had a nasty cold about two or three weeks ago. Took a lot of CVS’s version of Zycam, and it worked for me. Was sick for five days (two of them in bed, and an extra day just puttering around the house in my pj’s) And yes, it is cold here, too. I live in metro Detroit, and we’ve had way too much single digit weather here. Detroit is in the southern end of the lower peninsula, so we really don’t often have this extreme weather. Looking forward to the 20s and 30s again next week. Keep warm and feel better soon, Vin. And wishing you the best of health!!! – Denise
November 23, 2017 at 6:18 pm
Hi Denise! Thanks you so much for providing more info. This is to thank you for recommending The Metabolic Approach to Cancer. I have skimmed through it quickly.
Wishing you best of health!
vin
November 24, 2017 at 11:52 am
Hi Vin,
You are very welcome. I wrote this while in the vet’s office waiting to see if my dog has long for this world (he does!). I also skimmed The Metabolic Approach to Cancer. It bears re-reading more slowly. I particularly found meaning in the chapter on Hormones. Relevant for all of us. I have given away copies and keep reading it myself.
I have more posts to come.
All best, Denise
January 22, 2018 at 9:20 pm
The number for 25-Hydroxyvitamin D is 132nmol/L which I guess is not bad.
I take 2-3k IU of D-3 everyday.