CLL: My Journey to Healing

My Road to Healing

In The Beginning; How I Found Out I Had CLL
1999 – In late August my son was visiting from Chicago. After drinking a very sugary mixed drink, I develop a nasty rash on my head located mostly just behind my ears. Because of this, I decide to seek treatment at the local county health care clinic. The doctors there referred me to see an oncologist, and as I noticed troubling changes in my body, I became concerned. I was soon diagnosed with CLL – Chronic Lymphocytic Leukemia, which had already progressed to stage 4, meaning I had approximately 4 years to live. I was told this disease usually only happened to old people over age 60 and I was only 51 years old!

At first I simply freaked out! I had recently come to California in 1998, a year prior to the diagnosis, to begin a new life with my partner. When we heard the diagnosis, she and I had a sense of disbelief, as so many of our plans seemed to be crumbling before our eyes. I was faced with something I seemingly had no control over. I had a lot of soul-searching to do.

I was unemployed at the time. Some of my Big Dreams had failed to materialize. Later I figured out that this failure had something to do with the CLL. It represented a type of “giving up.” Then after I regained some of my composure I started to look for ways I could get my life back. I kept going to the local county hospital to see my doctor since I had no health insurance or job at the time.

My Journey into Healing Alternatives
In the months that followed, I was hospitalized twice for massive infections because my immune system wasn’t working properly anymore. I had huge lumps on my neck, shoulders, and arms. I was tired all the time and my bones ached. There were many emergency room visits as well for related problems.

I told my doctors that I wanted to investigate alternatives, and they reluctantly agreed to give me six months to do so. I began a journey of doing everything I could think of to get better. I entered into vitamin regimens, positive thinking, and going to healers. I investigated eating raw foods, grinding wheat grass several times a day, and eating raw liver. The liver made me sick.  From there I went to intensive vitamin therapies, essential oils, and therapeutic enzyme therapy. I landed in the hospital after a bad reaction to some of the things I was taking (potent essential oils). Nothing worked, and I was spending a fortune on alternative modalities, In the meantime, my white blood cell count kept rising.

I Finally Give Up. AMA Medicine, I’m All Yours!
I realized I’d used up my alternative options, My Stanford trained doctor suggested that I try a standard chemo called Chlorambucil in pill form. It is a nitrogen mustard alkylating agent, which is derived from mustard gas that they used in WWI. That made me sick so I quit after a few weeks. Later I tried Fludarabine chemo as a liquid drip. It didn’t hurt or make me feel sick, but after a few sessions I sensed that it was poisoning my body and decided that I didn’t want to go the standard AMA route anyway.

Even though I didn’t experience horrible reactions that some people tell about, after the second or third round, I felt it was time to stop. Killing the healthy parts of my body to get to the bad guys didn’t seem right, and I didn’t like the side effects I did experience, or the implication of what I was doing.

2000 – At the suggestion of my doctor, I looked into BMTs’ – Bone Marrow Transplant, which is the “holy grail” for CLL sufferers. My doctor had suggested that a BMT would be the way to go for me. So he arranged for a trip to see the friendly doctors at Stanford. Their plan was to have me go on the chemo drip for up to eight months and then undergo the BMT on an outpatient basis. What this really meant was that first they would poison me to within an inch of my life with the chemo and then suck all the marrow out of my bones, and then clean it, and then replace it. I would have to live in a contraption that looks like a beekeeper’s hat for weeks while my immune system was rebuilding. After that, I would be on drugs most likely forever. I told them I would think it over.

My doctor at the County Hospital was a pretty cool guy. He had been trained at Stanford and was willing to work with me at the pace I wanted to take. About six months after my diagnosis, he retired and was replaced by a much younger woman doctor from Sloan-Kettering, one of the premier cancer hospitals in the US.  After I was diagnosed with CLL, my WBC went as high as 159,000. It decreased minimally with the chemo, but then stayed rather high. I was stable, but the prognosis for the future was not too good; uncertain at best.

I am a Failure!
I was unemployed at the time, and very depressed. I felt that my life had been a failure. Some of my Big Dreams had failed to materialize. A radio show I had worked on for many years had ended, and so I felt at the end of my rope. Later I figured out that this failure had something to do with the CLL. It represented a type of “giving up.”

About this time I got a reading from a psychic friend of mine in Britain. He basically told me that I was not going to make it unless I made a key decision to live. According to him this was a pattern from past lives repeating once again. I decided, “It’s time to lick this!” And so I made a decision to live! After I regained some of my composure I started to look for ways I could get my life back.

My doctors (including one at Stanford) recommended a BMT as the “final solution” after six months of chemotherapy. The cost and the uncertainty of success made me pause. I felt this could not possibly be the only way, even though medicine had no other alternative and all the other things I’d tried didn’t work either. It was time to put on my researcher’s hat and leave no stone unturned. It was time for me to take my health and well-being into my own hands. I’d come to a point where I wasn’t able to work because of the fatigue level, and knew I had to do something to rebuild my body.

I began an extensive research process. I heard about a Chinese Qigong master who was having good results with people who had cancer, so I went to her 24 hour intensive, and began a qigong regimen that included intensive fasting. I felt better, lost a lot of weight (I’d been overweight) and was feeling pretty good. However, the white blood cell count was not lowering.

2001 – I figured since I was feeling better, I would try to work again. (I also needed the money.) Yet, I also sensed that I needed a very physical job after my years of a sedentary job editing video and doing a lot of computer work. I got a part-time job at a local Kinko’s so that I’d be on the move more, and as I’d suspected, it built up my stamina. At first I would come home dog tired, but as the weeks turned into months, I was able to sustain energy levels that I hadn’t experienced for a number of years. Yet I could also feel a pain deep within my bones if I sat around too long after I got home.

While at this new job, I had time to continue my research into the human body and into the interaction with nutrients, minerals, and chemical interchanges. I felt an answer was looming just out of reach. In April of 2001, while researching new types of water filters, I found a little book that talked about the role of calcium in cancer. What I read in the book made sense to me, and after a few inquiries, I found a company that sold a product that I felt intuitively was going to be good for me. I contacted one of the distributors, who was extremely helpful, and I began taking coral calcium.

After only 5 days on the product, I went for my regularly scheduled blood test. The results were pretty impressive! For the first time in a year, my WBC blood count had dropped. It had been hovering around 30,000, and suddenly it registered 18,000! My doctor asked me what I’d been doing differently. I told him, and he dismissed it. As he walked out the door, he looked over his shoulder at me. “It can’t hurt anything, though…. so why not keep it up.” I did.

Each month when I went for my check up, the WBC blood cell count either stayed stationary or decreased. However, other parts of the blood panel were also moving in positive directions, and I was noticing major differences in my body. The lumps were slowly going down. My skin was clearing. My hair was growing in darker. The horrible body cramps I’d had were alleviated. I could sleep through the night without pain, and a particular problem I’d had with waking up in a jack-knifed position was gone. My endurance level increased, and I was feeling more like myself than I had in years.

Root Canal Therapy!
Somewhere during this timeframe my brother told me of a book that I am now certain contained the key to reversing my CLL. It was called Root Canal Cover-Up by George E. Meinig, D.D.S., F.A.C.D., one of the founding members of the American Association of Endodontists (Root Canal Therapists). The book summarizes the 25 years of root canal research of  Dr. Weston Price, which was conducted in the early 1900s and covered up for 83 years.

While living in Chicago I had a fancy Michigan Avenue dentist who performed a not so fancy root canal on one of my teeth. I assumed it was ok.  Now almost two years later I had my doubts. After reading Dr. Meinig’s book, I decided that I could not take a chance and leave it in my mouth. I decided to have my single root canal filled tooth removed. I felt lucky I didn’t have any more than one to worry about.

I continued on coral calcium. As of November, 2001, my doctor began to show signs of taking what I was doing seriously. He asked a lot of questions, and determined that my improvement did not follow the normal progression of the disease. Since there was nothing else I was doing, he determined it – the coral calcium – was worth recommending to another of his patients who was about my age and had a similar case.

Since I was doing so much better, I continued to go for tests only every two months, and at the last one, my doctor told me that I could live with the levels as they currently were indefinitely. What started out as a “death” sentence was transmuted into a normal life!

Although I was not yet totally healed, my WBC levels as of April , 2001 were down to 15.6!  I consider that to be a pretty decent demonstration after having a high of 159.0 just two years before.

2002 –  In October I have been working at Kinkos for one year and I have had enough. I was able to obtain a position at a local non-profit organization where I still work today. Through this job I get Kaiser HMO insurance. After about a year I finally make contact with the Chief Oncologist. I tell her my story; that I have healed CLL. Of course she doesn’t believe me. She orders more blood tests. And over time these tests only go to provide additional proof of my ongoing healing.

In 2003 she orders a full body CT Scan. It shows nothing serious. Over time my blood tests continue to get better. As of 2009, the tests are the best ever! Everything is now totally within the range of normal and it has been this way for many years except for some anemia. And now even that is normal!

In 2009 I saw her again for a routine checkup. What does she want? Yet another CT Scan! I am holding off for now. I may have other health issues from time to time but not CLL!

Summary
I think we have to make sure we are not trapped in a mindset that believes only one way is possible. Medicine does not yet have the magic bullet that will cure this disease, and many of the regimens used to help it are harmful to the body as a whole. I am not against using the benefits of medicine, but I do think we need to recognize that its limitations do not have to be our own.

I plan to live a long and healthy life. I took the coral calcium for several years, and as I feel other things might enhance the quality of my life, I introduce them, too. If the medical community comes up with a magic bullet that cures this disease, I’ll be the first in line. But until then, I’m acting as my own advisor. I’m learning about my body and its needs, partnering with medicine, and taking a view that answers don’t always come from the expected sources.

Today, Life is good!
– Steve