Miscellany

This is an experimental writing tool. Blogging is an excellent way to write a little bit, every day. That's all fine and good, except that there's something that I've been meaning to write about for the better part of ten years now. So instead of finding links (and interesting articles, and humorous anecdotes) to fill my calendar day after day, I will try to piece together my own history with leukemia.

As much as I want the story to be linear -- and as much as I realize that the finished product most likely will follow in chronological order -- I can't command my mind to remember it the way I want to write it.

So I will bite off a little bit here and a little bit there. I will categorize the memories. That's what matters. Because I expect to be writing exclusively about the past, the current calendar seems less than useful. I may change my mind about this, the further I get into documenting my history. But for now, everything goes to a category. The home page will still retain recent work, but archived "posts" all belong to a greater whole.

For that matter, I reserve the right to edit any post, for any reason. I will be using a blogging tool at the same time that I fly against some blogging "conventions." No calendar, for example, and when you view my "categories" (i.e. the Table of Contents), the display order is reversed, so it should read the way the story unfolded.

'Nuff said. Time to build some back story.

Written last year, but still applicable today. Two big reasons to be thankful.

It was probably Dr. Collins who first brought the possibility to my attention. My chemotherapy would be very strong. Lots of nasty side effects, some short-term, some, maybe, long-term. And this doesn't even include the chance that I might have needed a bone marrow transplant. That process is much more involved, with the stated goal of "obliterating the marrow function."

I don't think it had even been two weeks since my diagnosis, and I'd pretty much focused on what I'd considered a long-term goal: get healthy enough to return to school in the fall. Six months away was about as far down the road as I wanted to plan.

Dr. Collins, on the other hand, was definitely thinking long-term. Before the chemicals started slowly dripping into my Hickman catheter, she asked if I wanted to, umm, make a donation. The phrase "put some sperm on ice" may have entered the conversation. She didn't know. She couldn't say for certain, at my age, with the chemo, with other drugs meant to mitigate the side-effects of the chemo, well, she simply could not say one way or another if I'd ever be able to have children.

I was twenty years old. A month earlier, the most important decision I needed to make was whether or not I wanted to listen to Kate Bush or Neneh Cherry while I played pool with "da boys," whether I would be drinking Beck's or Guiness. The thought of one day having children had never entered the equation. There wasn't much time to decide, and my future vision was still pretty myopic.

I did not, shall we say, make any deposits in the spring of 1990.

Consider me absolutely, eternally, unbelievably thankful for the way things have turned out so far, all things considered.

It has been brought to my attention, recently, that it's probably not the best thing to have a five year gap on a website chronicling my adventures with leukemia. Couple that with the fact that comments have been broken for I-don't-know-how-many-years and it might have appeared that the site was dead and unresponsive because, well, I was, too.

Not at all true. In fact, within the past few months, I've celebrated nineteen years in remission, as well as my fortieth birthday. I am returning my focus and attention here after a very long absence.

Unfortunately, while attempting to clean things up a bit, a few things were inadvertently broken along the way. I apologize for the mess. Should be able to muddle through the updated MT templates over the next couple of weeks and put together a serviceable design.

Some long overdue changes are going to be made around here. Among other things, there will be less of the "story" available (and maybe organized a little better). Colors might change. Might also drop a few other links here and there, in particular to highlight what's I'll be doing to celebrate twenty years in remission.

Much more to follow.

There is a great deal of story behind my story, much of it available deep in the archives -- a couple hundred pages or so detailing my initial diagnosis in (and flight from) England, as well as that turbulent, touch-and-go first round of chemotherapy. I have been filling in the gaps in the story offline, including my second round of chemotherapy, a summer of healing away from the hospital with Scott, Blake, Jeff, and other high school friends, and my also crazy tough third round of chemo (brain abscesses, surgery, and all that hanging by a thread).

As I've been reviewing and editing and revising everything over the course of this summer and fall, some entries stand out more than others. Consider this the ultra-condensed version. A "greatest hits," if you will, ten (or so) of my favorite entries culled from the larger set of archived posts. In chronological order:

• Here Is How It All Begins


• Insert Irony Here


• Sunday Is Difficult


• Survival Rates


• Dr. Hickman, I Presume


• Introducing Cindy & Anne


• I Should Rage


• Could Be Worse


• Susan's Room


• Do A Little Dance


• Sucking Finhead

This is a great article that provides more details about the recent breakthrough in gene therapy -- specifically modified T-cells that have been re-engineered to fight CLL.

The trial was a Phase 1 study, meaning that its main goal was to find out whether the treatment was safe, and at what dose. Of course, doctors and patients always hope that there will be some benefit, but that was not an official endpoint.

Mr. Ludwig thought that if the trial could buy him six months or a year, it would be worth the gamble. But even if the study did not help him, he felt it would still be worthwhile if he could help the study.

When the fevers hit, he had no idea that might be a good sign. Instead, he assumed the treatment was not working. But a few weeks later, he said that his oncologist, Dr. Alison Loren, told him, "We can't find any cancer in your bone marrow."

Remembering the moment, Mr. Ludwig paused and said, "I got goose bumps just telling you those words."

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