10/19/12 CLL Blog? Yes, It Still Is!

I started this blog to write about my adventures in dealing with cancer. It was good for me to have done that, because nearly all of my angst and fears just vanished into the ether as I wrote about it. Three years ago I had just finished round three of six rounds of chemotherapy. November will be three years that I have been in a complete remission of my Chronic Lymphocytic Leukemia. Though in complete remission after those first three rounds, I was advised and did take the final three rounds to knock the Leukemia back even further on its rear-end. I have enjoyed my remission, but know that it is not permanent, that the leukemia is still lurking somewhere in my body, just not active enough to be detected at this time; it has not gone away. It will likely visit me again, much like an unwelcome house-guest who remarkably seems to turn up right at suppertime. It does not have to, but it most likely will.

I am still aware that I have some unfavorable genetic markers that place me in a higher risk category for a more sinister advancement of the disease, in particular the dreaded Unmutated Immunoglobulin Heavy-Chain Variable Region Gene (IgVH). This, in combination with elevated ZAP-70 protein, Cell Marker CD38, and elevated Beta 2 Microglobulin (β2M), puts me at a much higher risk of advancement than many others with the same type of leukemia; but my prognostic indicators are not the worst ones, either (Deletion at Chromsome 17q). With cancer, one learns that things are what they are. But what things are and what things seem to be are not necessarily the same thing, either. Sometimes things are not nearly as bad as them seem. Sometimes, they are worse. If, indeed, they become worse, then let it not be because they seemed worse than they really were. There is a lot of healing in our attitude.

Now, I have included attitude in the mix, perhaps provoking someone to think that I think I did well during my chemo because of my attitude. This is not so. I have had all the feelings, the dejection, the fears, and the depression all cancer patients have. I had days of great victory. I had days of great defeat where I hid in dark corners, thinking dark thoughts, making dark plans. On many days I was capable of defining my attitude, but many others saw the attitude defining me. This was not what I wanted, but leukemia wasn’t what I wanted, either.

“You can’t always get what you want,” Mick Jagger sang, directly to me, it seemed. I cringed and sought shelter in dark places, but the song came ringing back to my ears, just as if someone had turned up the volume on my vintage Marantz Integrated Amplifier. The choir in the background sounded just like angels coming to carry me home. What I wanted was to be rid of this. Mick sang again, louder this time, and pushed my attitude to a new low. The lower it got, the more I wrote.

“But if you try sometime,” Mick kept on singing, “You just might find, you get what you need.” I liked the ending of the verse better than the beginning. Was that angels or Keith Richards singing in the background? I couldn’t really tell.

I wrote and wrote in this blog, then I wrote some more, all throughout steroid induced sleepless nights, roaring like a lion with a toothache in the words typed as hastily on this keyboard as I could get them out, which is pretty fast; howling like a North wind behind a storm front, just like we had this past Wednesday night. I wrote things I knew about. I wrote things I didn’t know about. I wrote things I really felt. I wrote things I did not feel and then felt my attitude about them change. The more I wrote, the better I felt, until I finally wrote my leukemia into remission . . . or was that the chemo?

I wrote until I have over 1,200 pages of blog posts. I gave names to my physicians and the places that treated me: Mainmost, Gooday, Hemosapien, and the Big-as-Texas Cancer Center. The more I wrote, the more I heard from others who had the same type of cancer, or another type of blood cancer. Many of them had far more pressing needs and urgency than me, but they said that reading my blog had encouraged them, maybe helped them. The more I heard from them, the more I wrote. The more I wrote, the more I heard from them (You know who you are!). This kept on until I became a compulsive writer. I now keep a journal as well as write this blog. I am compulsive at both, but border on obsessive/compulsive on my journal, insisting on a Moleskine book to write in, and letting nothing but a fountain pen touch the page. Each now-filled Moleskine not only contains words, but is stuffed with four-leaf clovers. There are dozens of them in each book now sitting on the shelf.

Everyone who has ever noticed has asked me how I could find so many four-leaf clovers. Many wanted to know if I was lucky or did I know some trick. Well, I have always been lucky, and being lucky is better than being good some have said, but then I got this leukemia.

“Perhaps you are not as lucky as you thought,” they said. They may well have a point, I conceded, more to myself than to them.

I’m still lucky. Even with the leukemia, I’m still lucky. I don’t think I would change what I have been through the least little bit, though if you told me that you could guarantee my complete cure for a dollar, I’d likely betray the essence of this sentence by immediately handing you the dollar. I have been blessed with an opportunity to see life through a different set of lenses. Either the filters have been changed or the blinders have been removed, I can’t really determine which; but something is different. I like the difference. Whatever is there now that wasn’t before is welcome. Whatever is gone now that was there before is a welcomed loss. I can’t determine whether I have gained something or lost something, I just know that I wouldn’t trade what is for what was, but I may be willing to trade what will be for what was. Is that me defining my attitude, or my attitude defining me? I don’t know which. I’m not sure I want to know.

The number of things I don’t know has increased a thousandfold, by ten thousandfold; the decimal point just keeps on moving to the right, forcing an infinite number of zeroes to its left without me having had much to do with it, or about it, other than having had the occasion to stop and think about things that no one really wants to think about it. If there is a blessing in cancer, this must be what it is.

So I write. I think about whatever I am motivated to think about and I write about it. I speculate, wonder, and write, and I am the beneficiary.

“But you never did tell us. Is it by luck that you find so many four-leaf clovers, or is there some skill, some experience, or some method you use?” everyone asked.

“OK, it’s no secret. I will tell you if you are sure you want to know,” I said.

They leaned forward in anticipation, several of them already having said that they had never found one in their life. I marveled at that.

“First,” I said, “You need to find a patch of clover.”

“Well, that’s obvious,” they said.

“Never overlook the obvious,” I replied. I could hear the inrush of their breath on that one. How many times do we overlook the obvious, missing our chance, thwarting our own designs, dealing ourselves and others much grief?

“When you find a patch of clover, you have to cast your gaze downward,” I said, stating the obvious, again.

“And?” they asked.

“Well, the next part is easy,” I answered.

“Tell us!”

“Then you simply don’t look at the three-leaf clovers,” I said.

Am I lucky? I think so. Am I having to spend a lot of time, now, writing about dealing with chemotherapy, doctors, hospitals, research protocols and clinical trials, insurance, and the myriad vexations of dealing with the complexities of health-care? No, I am not, now. That was then. This is now. Tomorrow is tomorrow.

I think I’m lucky. I do know this . . . I can sure find a four-leaf clover.

Do you need one?

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