Where I Stand

Life is beautiful. 'nuff said.
Okay, probably not. I have completed 10 weeks of arsenic chemo at the Perelman Center for Advanced Medicine at Penn. It has dropped some of my blood counts down a bit, but not dangerously so. I have a little peripheral neuropathy as a result - some burning in my feet and hands. That, fortunately is fading quickly as the arsenic leaves my system. Right now I am experiencing some numbness and tingling in my feet. So that's going pretty well.

I have 2 glorious weeks off from my "bad part time job" getting chemo. The only downside of that is I miss all my new best friends, the gorgeous and glamorous oncology nurses at the infusion clinic. It is amazing how fast you become accustomed to new things. Their good humor and smiling faces make poisoning my body so much easier to take.
NOTE TO SELF: Must use that idea in a story one day.

Next Up: In 2 weeks I start on a new chemo regimen. Actually it is the old chemo regimen I had in the hospital, daunorubicin and ATRA. This will destroy my immune system and my ability to make blood cells again. I will be easy pickings for any bacteria or virus that passes by. It's like burning the sugar cane fields, I guess. You need to clear everything out so new healthy growth can return.

When my blood counts come back, they will hit me with the same combo again and torch the field one last time. After that, my friends, the sky's the limit! Hopefully I will be back in time for the beach.

So that's the story. This week and next week I will be loving life as much as possible before returning to the drug chair and a life of germaphobia. Stay tuned.

Winston? Smith? What's In A Name?

While Dave recuperates from his last week of arsenic chemo, please enjoy this story from the archives.

Brian Kaiser has been very intent for me to finally reveal the story behind my two last names, “Smith” and “Winston.” After 45 years it can, at last, be told. Legally, I was only obligated to keep the secret for 20 years. I kept quiet for a long time after that. But in the early 90’s, Oliver Stone kicked up a fuss with a movie that ignited people’s interest in things better left buried. So I have left them buried. Until now.

I was born December 9, 1963 in Reading, Pennsylvania. Up until two weeks before my family lived in Texas where my parents worked for a book company.

In November of ’63 my parents requested time off for Thanksgiving to visit family in South Carolina. November was a busy time in the schoolbook business with many orders coming in for second semester delivery. So my Mother, a billing accountant and my Father, the warehouse manager, would be needed for order fulfillment. Needless to say, they were disappointed.

Then, a week before Thanksgiving, the depository manager suddenly told them they could take the week off if they were back the day after Thanksgiving. It would be tight, but my folks decided to risk it. While packing, my mother realized she had, in her excitement forgotten to put the week’s checks on the boss’ desk for signature. And, being dedicated and reliable employees, they drove into work Friday morning to make things right.

The police had blocked off the street approaching the building, so my Dad parked in the railroad yard lot on the other side of the warehouse while my Mom went inside.

What happened while my Dad waited in the railroad parking lot by the little grassy hill overlooking the plaza and my Mom went to her office on the sixth floor of the book warehouse, I do not know. What I do know is that my folks never made it to South Carolina.

Over the weekend, my family packed up and moved From Dallas to Reading. My Father, George and my Brother, Ray were now called Wally and Wally Jr. My Mother Elinor now called herself Jean and my sister Dissy became Nanci. Only my sister Ellen was spared, she became “Ellyn.” Collectively, they became the Smiths. My Father would joke that the “feds” really got creative with that one. I was born two weeks later, David Smith.

After the 20 years expired, I was the only one of my family to reclaim the name Winston. But a birth certificate and a stubborn federal government keep me from making it permanent.

So that is why David Winston needs to have flights booked under the name David Smith. Even today, they are still watching.

The Parade's Passing By

Okay all you amateur psychoanalysts out there, here's a peek inside the cranium of yours truly.

Since my diagnosis, I have been afflicted with particularly vivid dreams. Some are horrific nightmares - like watching my little daughter get in a stranger's car while I am unable to do anything about it. And some are banal tedious and exhausting - like last night's.

I won't share the really awful dreams here. But the banal and tedious are so remarkably so and so remarkably exhausting that I wake up more tired than when I went to bed. Here is a prime example.

I am in a college town that looks like Durham, NC near Duke. I must get from one college building to another on the far side of town in my bare feet at night. The town is hosting marching bands from all over the nation and they are practicing in the streets. The bands snake through the town on various side streets and alleys moving like the bugs in that old video game Millipede. These aren't high school bands marching slowly along and trying to hit all the notes. These are college bands with all the choreography and swinging instruments and such. I can't walk through a band, I must pass the band, get ahead of the drum major and slip between bands. In addition, there are others trying to do the same thing, and they are passing me because I am in bare feet. Sometimes they cut me off so I cannot get through the opening between bands and must pass another band to get through.

This went on all night. All night.

What's up with that?

I Am In So Much Trouble

A Poem By Sara Catherine Smith, age 5

He cries,
With blood coming out of his eyes.

I guess this is better than the tied-up Bondage Barbies I've been finding all over the house.

Gotcha!

After 10 weeks of arsenic chemo it finally got me. The dreaded Side Effects.

I guess it would be a tough body that would not react to being poisoned on a regular basis. Rasputin comes to mind. Stabbed, poisoned with enough cyanide to kill 5 men, shot 4 times, and clubbed into unconsciousness, Rasputin didn’t die until he was tied in a sheet and thrown into the icy Neva River. The autopsy revealed that the cold water revived him and he drowned trying to claw his way out of the bedsheet. But I digress.

I make a big deal out of being treated with arsenic, but it really is a relatively small amount. Over 10 weeks I have received 800 milligrams, which converts to slightly more than 0.2 ounces. Much more than you would ever want to get at one sitting but not enough to really kick your ass when spread out over 10 weeks. Or so I thought.

The second-to-last day of my chemo I awoke with my feet on fire. I didn’t think much of because that sometimes happens after a night of carousing and fire-walking. But since I hadn’t been to Mahina Maharu’s Poi Palace in months, I took it up with my oncology nurse.

It seems 40% of patients treated with arsenic develop peripheral neuropathy. The symptoms range from mild tingling to numbness to burning. I apparently jumped right into the fire. Have you ever walked across Georgia asphalt in your bare feet in August? Yeah, that’s about right. It has my thumbs, too. Which is odd.

They say it goes away as the arsenic leaves the system. We shall see. Perhaps I will take to walking around in buckets of ice water. Now there is a conversation starter for you!

You Gotta Love The Funny

My son Cooper and I tease each other with brutal regularity. The other day when I told him he couldn’t do something, he reminded that I was an awful Dad and he hated me. He did so with a smile on his face. Per my programming, I immediately jumped into “Guilt” mode.

“Hmmm. I wonder who it was that asked you to list all the fun things you want to do this summer so we don’t miss anything? I wonder who it was who helped you with your latest project? I wonder who it was who let you use my laptop to look at that video on YouTube?”

“Who was that? Was that the Easter Bunny? Was that Santa Claus?”

Without a beat he replied, “Well I knew it was one of the two fat men who give me things.”

Sometimes you gotta look past the disrespect and just love the Funny.

I'm Down, But Not Out

While I recuperate this year, some of my older projects are finally seeing the light.

Here's a little documentary I worked on last year for UK's Channel 4. It has been picked up by HBO and was an official selection at Sundance.
Click Here for times.
This doc is a great example of why I love what I do. How else would I meet interesting people like Joe and Marvis Frazier and learn so much about the arcane world of boxing in such a short time?
The other great thing about my job is working with very talented people like director John Dower. This was not an easy story to get other people to tell and he did a wonderful job getting the story out of them.
I am very proud to have worked on this one. Even if you are not a boxing fan this is truly worth watching. It is not just a story about boxing. It is a story about two very different champions living with the cost of past glories and a time in America that is very different from today.

Resurrection

Never been a big fan of Easter. For me it has always been a celebration of getting sick on bad chocolate each Spring.

This year things are different, of course. The theme of resurrection or rebirth has particular significance for me. The theme is ancient. It is pre-Christian. Christ was reborn in the Spring as were Attis, Adonis, Osiris and Dionysus from older civilizations.

Today, remission is my resurrection.

This Spring I am feeling reborn from a December dalliance with death. I am reminded by circumstance that ten years ago I would not have made it through to Spring. Or, if I had lingered this long, it would have been an awful painful time that I care not to think about.

I feel it is most fitting to remember those who came before us – those who are no longer with us. This Easter I would like to remember all the people who I have never met who have conspired to save my life.

The chemotherapy regimen that is keeping me in remission did not appear out of thin air. It is a result of hundreds, if not thousands of men and women who bravely allowed the doctors to test hundreds of drugs and drug combinations on them. The people who took one for the team. The people who ran into the fire to save people like me.

Imagine if you will, your own reaction to the doctor who first proposed the use of the deadly poison arsenic as an experimental treatment for your disease. Imagine, if you can, agreeing to try it. Imagine the weeks of trial and error as the dosage is adjusted to find the right amount to kill the cancer and not kill you. As a result, I get a daily dose of arsenic that kills off any stray leukemia cells but affects me very little.

Thank you all whoever you were. You are the giants on whose shoulders we stand.

Things I Never Thought I'd Say #124

"I must learn to have more patience when doing my nails."

How do the transvestites do it? I know how the ladies do it. They are, for the most part, trained from birth to paint their nails. But trannys have to learn how to do it much later in life - like me.
[The original version of that sentence read: "But trannys, like me, have to learn how..." Boy am I glad I caught that in time.]

I have what they call "chemo nails" It is a change in the thickness of my finger nails due to the treatment. In my case, the new nails are thinner than the old, causing a bump in the nails.

I know what you're thinking. No biggie, right ? The problem comes when you try to use them. They bend at the line between the old and new nail. And that hurts. Particularly when the line is in the middle of the nail. Until now I never realized how much I use my fingernails.

So I've had to start painting 'em. Nothing fancy. Just some clear polish. Gloss polish unfortunately, so it looks like I just got finished tearing apart a particularly greasy fried chicken. My problem is that I have no patience for this nonsense. I have no patience for dry-time. I find myself waiting about a minute before absent-mindedly jamming my hand into my pocket for change or something.

And how do you paint your right hand when you're right-handed? I'd make a lousy tranny. For many reasons.

Anyway, that's my story. And I'm sticking to it.

NEXT UP: Chemo Nipples

What's Going On

If you haven't heard from me in a while, it is because I am still recovering from last Saturday night. I picked up a bug that has been kicking my ass for the last week. I am just getting my voice back but it is still weak. I know the kids are enjoying that part.
Hopefully this weekend...