My Story

(Please note: This is the long version  of my introduction to CLL leukemia.  For more pointed (and short) articles about nutrition, supplements, lifestyles, causes, and so forth, click on the Categories on the right side of the blog page. )

My Story. In 2001, I was forty-six years old, the mother of two college-age sons, celebrating my 25th anniversary with a man I still loved very much, and I was at a good place in my career.  It had been a long time since I’d gone to the doctor, so I asked around and found a female M.D. not too far from home and went in for a check-up and a CBC (complete blood screen).

The answering machine. When there was a message from the doc on my answering machine a few days later, I was uncharacteristically unworried.  Silly me.  I was pretty certain she was calling to tell me that my cholesterol was high and it was time for a statin drug.  I had no interest in statin drugs.  Still don’t.  I think they’re nothing more than a poisonous profit center for Big Pharma, who is constantly trying to find common “abnormalities” that they can “treat” and therefore make billions.  So I actually waited a day.

The message. But it wasn’t about the cholesterol, even though it was on the high side.  It was about my white count.  I had too many white blood cells, and she wanted me to come in again and get tested the following week to see if it was a passing infection, or if it was still high.  I didn’t freak out.  People get infections.  I was kind of annoyed, actually, at having to return to the doctor’s office again so soon.  I have a real problem with paper dresses and the smell of alcohol.  Not to mention sitting still while a stranger touches you, and then another stranger pokes you with a needle.  Not my thing.  I was expecting a five-year reprieve.  Silly me.

Back to the lab. So I took my sweet time and went in the next week with a chip on my shoulder, rather than having the proper amount of worry.  I gave an arm to the technician and turned the other way.  I don’t like seeing anyone’s blood, especially my own.  I did my ironic thank you to the technician who’d just inflicted minor pain on my inner elbow, packed myself up and went home.

Time to worry. As the days passed, I started to worry.  Finally.  When it was too late.  I called the office, but the doctor never returned my call, even though the receptionist told me that the results were in.  I fretted and waited another day.  But no call.

Calling the doctor. The next morning, I called again, and insisted on talking to my doctor, who still didn’t have the cohones to call back.   I called later in the early afternoon, and said that I NEEDED the results.  That I would talk to ANY doctor who would call me back and let me know the results.  A short while later, doctor number two, another young female, gave me the call. She told me that my white count was still high and that I should see a hematologist.  She gave me the number of a medical school buddy that was in the business, and wished me well.

Hematology-Oncology. I called the hematologist’s office, and the receptionist said, “Hematology-Oncology.” I freaked out.  Cancer?  The doctor hadn’t said a word about cancer. I had to make an appointment at the local Cancer Center?  No way! It couldn’t be true.  Someone had obviously made a mistake.  Oh my God.  It couldn’t be true!

See me now! I swallowed hard and got my voice and absolutely begged the receptionist to squeeze me in THAT DAY.  I couldn’t possibly wait another minute to find out WHAT THE HELL I HAD.  Fortunately for me, the doctor’s practice was young yet, and they were able to squeeze me in at 4:00 pm.  Just a few hours to wait.

Cancer Center. The drive to the doctor’s office was no picnic, especially when the big”Cancer Center” letters came into view.  My husband left work to join me, as I was in such a panic.  We sat in the waiting room, a large airport-like arena, with just about as much personality, before we were called in.

Another visit. Another doctor feeling my neck, my armpits, squishy belly, my groin.  And then the first  and only visit to his office, where we could sit in chairs, across the desk, like equals.  “Good news,” I swear he used those words.  Maybe he did his undergraduate work in marketing?  Good news!  “You have chronic lymphocytic leukemia.”  I was looking out the window of his office, seeing the rooftop of an adjacent part of the building, imagining eating on that roof, sitting at an umbrella table, laughing and talking, without a care in the world, wishing I could just go out there right then and leave this ridiculous appointment.

“Don’t worry, it’s like having diabetes.” He said this too.  I’ve since discovered that having diabetes is a horrible thing that affects just about every other part of your health and your life.  But at the time, it was oddly comforting.  People with diabetes didn’t die.  At least not right away.

To tell or not to tell. I went home.  My husband went back to work.  I called my best friend, who wasn’t at home.  I talked to her husband.  I remember it now through the haze of numbness.  I remember telling him that I had CLL leukemia, and I remember feeling his response more than hearing it.  He was sorry, just like everyone was sorry about an Uncle Abe I’d never met, who’d died of leukemia before I was born. I was a dead woman.  I decided right there and then that I wasn’t going to tell anyone outside my immediate family unless I had to.  Until it was obvious.

Still undercover. It’ s been a lot of years now since that day (July 2001), and I’m still undercover about the leukemia thing.  I haven’t had any conventional therapy,”  but I’ve been trying to move mountains with all the alternative and nutritional changes I could make.  As one man I spoke to recently said, “You’ve been skating uphill for nine years.” (I’m editing today; it’s been fourteen years.) I kind of like that.  It makes me feel much more athletic than I really am.  And despite the fact that I still have this leukemia thing – despite all my efforts — it made me feel more successful at it than I’ve felt in a while.

And now this site… At the urging of my husband/mentor/coach/favorite nag, I’ve decided to create this website to put out all the information I’ve discovered — all in one place.  For those of us with CLL leukemia, our second greatest enemy is fear.  The more you know, the less you fear.  Here’s to knowledge and a long future ahead for all of us!