Thursday, July 7, 2011

July 7: A "Death-Defying" Encounter Tuesday

Tuesday I showed up at the doctor's office thinking that I had acute leukemia. I walked out thinking that I only had a precursor to leukemia called Blastic Plasmacytoid Dendritic Cell Neoplasm.

I was almost disappointed.

"Wow," I thought, "this isn't very dramatic." (Hey, if you're gonna live, it might as well be interesting.)

Worse, I had just met a lady whose Acute Myeloid Leukemia (AML) was in remission from chemo. She comes in every month crossing her fingers, hoping the AML will stay in remission for two years. If it is, she's probably cured. Yeah, cured. Really cool when you have a killer disease like AML.

But, me, I just had baby-AML. I might even go through an outpatient chemo, the doctor told me.

But, hey, whatever God wants. I tried not to be too disappointed.

So I went back to the hotel, opened my laptop, and began googling to find out what in the world Blastic Plasmacytoid Dendritic Cell Neoplasm really is. And I began to read ...

WARNING!!! If you are one of the many wonderful people who love me, you WILL want to read this morning's post before proceeding. Do not have happen to you what happened to me. It's hard to breathe.

Here's what I read. Honestly, I'm not kidding, these are the things I found on the first few pages I looked at with no good news in between. I've bolded the kick-you-in-the-gut words.

  • "Despite the initial response ... being mostly excellent, the prognosis is poor"
  • "this aggressive hematological disorder"
  • "which is VERY RARE [caps in original] and according to the Internet not curable and usually presents with skin lesions [note: I have these]. There are very few cases reported and not very good outcome."
  • "Systemic dissemination and short survival are characteristic." [Keep in mind here that "systemic dissemination" means having leukemic symptoms, which I have.]
  • A very rare aggressive cancer that manifests in skin lesions ... No long term treatment has been developed ... to date. Life expectancy is estimated at twelve to fourteen months. Chemotherapy offers a short term remission (approx. three months). A bone marrow transplant extends lifetime up to three years.

  • The prognosis ... is generally poor with a median survival of 14 months. The treatment is conventional chemotherapy for AML, which generally shows a good initial response followed by QUICK AND FATAL RELAPSE.

The "quick and fatal relapse" was the final straw. I think the word "fatal" set something off in my subconscious. I staggered out of the hotel room, muttering something about needing to get advice on how to tell my family ... as though it really didn't bother me, right?
I went in the parking lot and cried. I was having trouble even breathing right, and it wasn't the anemia causing it.
Then I looked up at God.
I don't know if you believe people can do that, but it's worked for me for 29 years.
And God said, "I'm not giving you any grace for next year. Do you want to know what I'm thinking today?"
Okay, that was just a feeling. With some exceptions, several of them recent, when I say, "God said," I mean, "God made me feel like this is really true."
Not very convincing for atheists and agnostics, I know, but incredibly successful way to live. Incredibly reliable. 29 years, no regrets, just more and more reliability.
Okay, so I'm thinking, "Oh, yeah. I want to know what God is thinking right now."
And God said (feelings, as above), "I'm really not worried. How about you?"
I told him I was fine, too, and I was. Total peace.
Suddenly I understood why I've worried so much financially. Getting everything in place so that things are secure is always just around the corner. I can't ever get there, and I'm always a little worried, no matter how much I try to be a good Christian take-no-thought-for-tomorrow kind of person.
I've been living in next year!
I've been living around the corner!
God's not around the corner! He's right here!
Man, I needed that lesson back when my business went under in 1989. I been thinking wrong for 22 years and being one of those unspiritual, fretting Christians.

An Excursive Rant About Fake Faith

The fact is, faith comes from God. Working up good self-made faith based on something you read in the Bible doesn't work.
Yeah, I'm suggesting a lot of people have a fake faith that's a lot better for producing guilt than healing, miracles, or the peace of God.
I was a charismatic for almost a decade. I'll probably offend charismatics saying this, but most of what they do is wishful thinking, anyway. Not all, mind you! There's some incredible demonic things have been done and some awe-inspiring answers to prayer I've seen. Benny Hinn, for example, definitely had some real power back in the 80's (probably demonic), though I think he's fallen in love with money so much that he just limits himself to fake stuff now.
Okay, enough of that diversion.

Back to Real Faith

Looking at God settled me. I really believe that he told me I'm not going to die.
Then I really did make a phone call to figure out how to tell people I have a disease that's normally fatal in about a year.(That's not accurate. I just thought it was.)
Then I went back inside and found out that my demise was a bit exaggerated.
A few years ago, this very rare disease was fatal. They were treating it like other leukemias, and they would use chemo to drive it into remission, then wait to see if the remission "took." You can do that with other leukemias. With BPDCN, no remission "takes." The patient always relapses, and once he relapses, he's going to die. Too late to save him.
Now they know that once you achieve a remission, you do a stem cell or bone marrow transplant. You don't wait and watch for relapse, as that is fatal. On the other hand, stem cell and bone marrow transplant during remission prevents relapse.
For how long?
The disease is too rare for anyone to know. I know of a couple men who have been healthy for 18 and 26 months, respectively. How long will that "take"?
We'll see.
I guess I'm a medical study now.

1 comment:

  1. This is easier on the heart to read in 2018 than when you were in the midst of your battle.... (Hard on a mother's heart, and certainly equally as hard on many others who love you as much as I) Hope these kind of postings are a help to others who must go through a similar battle.