Two Down Forty-Eight To Go

Well that's two days of consolidation chemo down and forty-eight more (over the next 12 weeks) to go. So far, no adverse effects. They start with an anti-emetic drip - a palette cleanser, if you will - to keep me from getting nauseous. That is followed by the arsenic on a two-hour drip. The only side effects so far are a mild metallic taste in the mouth and a minor headache. The headache is more mild than the one I get when I wear my hat too long.

So the whole adventure is a 3 to 4 hour block out of my day. So much for my plan of getting a part-time CFO job.

I have to compliment Penn. Have you seen the new Perelman Center for Advanced Medicine at Penn? It is like the cancer facility you would see on Lifestyles of the Rich and Famous. Individual infusion rooms for each patient. Your own TV. And the World's Most Comfortable Chair. If you are uncomfortable in this chair, the problem is most likely, you. They could probably use it as a diagnostic tool. Imagine a La-Z-Boy that could read your mind and instantly know how soft or hard to be, or how high you would like your legs raised. Great chair.

Anyway, it is a first class act. If I had known the Abramsons were going to be funding my recovery from leukemia, I would have worked harder for them when they had Criterion. Wait... no... I did work pretty hard for them as I recall. Scratch that.

So if you're looking for me Mon-Fri 9a - 2p from now until (sheesh!) mid-April, I will be at Penn at the Perelman Center in the World's Most Comfortable Chair. Probably watching a movie on my laptop (Thank you, Tony) or plotting the boycott of all Fox News sponsors.

The Story Thus Far...

Some folks are just joining us so I thought I would interrupt my senseless musings for a story summary.

My name is David Mayer Smith. I'm known to many of you as Dave Winston, location sound mixer extraordinaire.

I have leukemia. APL (m3) to be specific. I am very fortunate in that APL has a very high permanent remission rate (95%+) and I am relatively young and strong for the treatment coming up.

I worked my ass off in October. Possible best month ever. But I was feeling kind of run-down afterward. I took it easy through November, but still felt tired. Thinking it might be diabetes or some kind of infection, I went to see my doctor who took some blood and sent me off to Thanksgiving. Well, the blood test came back and - surprise - there was no blood in my blood. Low red & white count and scarce platelets. The doc told me to be careful about bruising and bleeding.

On December 3, I found a bruise on my arm about the size of an orange - a bruise that had no known origin. I went to work anyway. Did the job. As I was wrapping out - nose bleed. So on the drive home I decided it was time to go to the hospital.
I spent a few days at Chestnut Hill Hospital where they dug a little hole in my back and into my hip bone looking for blood. They didn't find any. Now I don't know if you know this, but that's what they call bad. When they drill into your bones, they expect the blood to gusher like something out of There Will be Blood. In fact, I think that's where that movie got it's name. But I digress.

Anyway, no blood in my bones and no blood in my blood are two signs of leukemia. Chestnut Hill shipped me to Penn.

Merciful heaven above! Penn is awesome. If you want to know where they keep all those nurses like you see on TV - the kind, cool, caring, highly professional, yet highly empathetic ones - they all work on the 6th Floor of the Rhoads Pavillion in the Abramson Cancer Center at Penn. Oh, and I had about 150 doctors. I might be able to pick one or two of them out in a police lineup, but by God I had 'em!

I was put on a program of chemotherapy. That means, if you don't know, they find some of the deadliest poisons ever made and pour them into your body in amounts that almost, but not quite, kill you. The objective is to destroy all of the bone marrow in your body to prevent it from making bad blood. And when - when - your marrow re-grows it will make good blood again. In the mean time, you feel like shit and you have no immune system, so they pump you full of antibiotics and transfuse you with red blood cells and platelets to, you know, keep you alive.

You're attached 24/7 to a pump that constantly floods your system with all this stuff plus all the extra nutrients etc. that your body no longer processes properly. You take the pump to the bathroom with you. You walk the pump around the halls for exercise. You sleep with the pump. You eat - when you can - with the pump.

I celebrated Christmas with no immune system which meant I had no place to go but up. Then, my brain handed me a curve ball. I was highly sensitive to light and had a constant low grade headache from Day 1 of chemo. A skull CT showed some blood in my brain where blood ought not to be. So I celebrated New Year's Eve with the fine folks of Penn's Neurosurgery Dept. They opened up my skull and drained off the blood and plopped me into ICU in time to see the ball drop.

As 2009 dawned, I sported 13 cool stainless steel staples in my skull. With the bald head, dry wrinkled skin from the weight loss, it made for a striking look - in a Pirates of the Caribbean way. While I was getting my noggin' drained, my bone marrow was growing like crazy, now making fresh clean blood to power the Dave Machine. Since the chemo, my body has been coming back with a vengeance. My blood count numbers have been steadily rising ever since.

January 8th they decided to kick me out of the hospital and I have been home and feeling better ever since. There have been a few small curves in the recovery at home, but nothing to slow me down.

Monday (1/26/09) I start the second round of chemo called consolidation. This is designed to make sure my bone marrow doesn't get out of line and start making bad blood again. I go to Penn 5 days a week for 10 weeks to get a little dose of arsenic. Now I have spent most of my life avoiding arsenic as I was told it was bad for me. Now I will be spending a great deal of my time with it coursing through my veins. Oh the things modern science can do!

So that is the story to-date for those of you just checking in. I have left out many, many things, like the incredible devotion of my wife and kids, the visits from friends which meant more to me than they could ever know, the hundreds of emails and phone calls from friends and colleagues - all of which helped me get through one hellish December.

The rest of this blog is me whining. Like most blogs. I just hope it is entertaining whining. If not, let me know. I'll either kick it up a notch or ridicule you for mocking a cancer patient.

Patient's privilege.

The Bucket List

No. Not my bucket list. I'm not there yet. Not for decades.

The movie.

Did you know Hollywood sometimes misleads you in movie trailers and descriptions? It's true!

In this case, they make The Bucket List seem to be a wacky buddy comedy about two older gentlemen doing all the cool things they ever wanted to do in their declining years. When it really is a melodrama about two terminal cancer patients and their final struggle to make sense of life as it slips away.

The Bucket List features all the highlights of chemotherapy: the diarrhea and vomiting, hair loss, bleeding catheters, and your perpetual partner, the IV pump, wheeled around with you wherever you go. It aims for high-minded "make life count" but misses completely and hits "you're really screwed unless you're a billionaire with the cash to make your dreams come true" - and buy redemption.

I only bring this up because when you're in treatment they tell you to keep your spirits up, laugh and watch funny movies.
I watched The Bucket List.

Ooops. My mistake.

Our Long National Nightmare Is Over

You don't think I would stay silent on a day like this, do you?

What I wouldn't give for a Presidential bitch slap up on that dais from the one person who could get away with it.
But that is not what today is about. It is about moving on.

As the criminals pack up and move out of Washington, and their friends and supporters in New York check the balances on their off-shore accounts before taking a last squirt in the CEO's bejeweled crapper and high-tailing it in the company jet, the rest of us will stand with the new President and hope he can figure a way out of this mess. The heroes of the ignorant and the greedy have left us with a steaming pile that even our grandchildren will struggle with, unless we can find someway to turn this whole country around.

It is no comfort for those of us who have known - for nearly 30 years - since Ronald Reagan, that this Republican philosophy of "Feed the Rich" and " Survival of the Fittest economics" was morally bankrupt and criminally stupid. "I told you so," will not mend the broken economy, nor will it resurrect the more than 4000 Americans who have given their lives at the behest of of an administration that views war as a profit center.

Today is about moving on. But it is not about forgiving or forgetting. Forgetting made it possible for the Bush administration to use the age-old game plan for stirring a nation to war - the one the Nazis made famous:

“Naturally, the common people don’t want war, but after all, it is the leaders of the country who determine the policy, and it is always a simple matter to drag the people along, whether it is a democracy, or a fascist dictatorship, or a parliament, or a communist dictatorship. Voice or no voice, the people can always be brought to the bidding of the leaders. This is easy. All you have to do is tell them they are being attacked, and denounce the pacifists for lack of patriotism and exposing the country to danger. It works the same in every country.” - Hermann Goering, speaking at the Nuremberg Trials after World War II

Forgiveness, for me, is not a requirement of faith. So I view forgiveness as something one gives someone who has erred - someone who has strayed from what they know is right. Forgiveness is for those who have repented, for those who have seen the error of their ways and desperately desire to be forgiven. It is not for those who blame their sins on "branding" and miscommunication, retell and compound the lies and perpetuate a myth that continues to get Americans killed and provide motivation to our enemies.

I continue to support the idea of punishment and retribution against those who have sullied our American flag and Constitution. But I agree with the new administration that this punishment cannot interfere with the mission of helping the nation recover from this long national nightmare.

What does this have to do with leukemia?

Everything is connected. Every out-of-work person today - every person without health insurance will wait until the cancer - any cancer - makes itself known before seeking medical care. And as we know from experience, by the time cancer makes itself known, treatment can be very long and difficult if at all possible. So the criminally negligent stewardship of our economy - the blind adherence to the economic "survival of the fittest" doctrine - despite all evidence to the contrary, puts more Americans at risk.

Anyway, you didn't think I could keep quiet, did you?

No. Not on a day like this.

New York Times Crossword Puzzle

My lovely wife, Bonnie bought me a collection of Will Shortz's New York Times Crossword Puzzles to do while in the hospital.

Couldn't.

Maybe it was chemo. Maybe it was the dilaudid. Maybe it was despair.

I just couldn't muster the focus or the will to work on them.

Today, I'm am kicking the ass of a puzzle on a daily basis.

I did two on Thursday.

So the noggin's workin'. Time to work on the rest of me.

Food Glorious Food

I've never cared much for food. I know those of you who have seen my paunchy self tear through a meal might beg to differ. But I think that's why I ate so much. I used food as fuel - lots of sugar and caffeine. I used it for immediate gratification - take a break, fill the belly. But I never cared about the food.
Then came chemo.
Things don't taste the same. They don't taste "real." The texture is different. And then, it's hospital food, so...
Some things don't taste at all.
I came home with orders to eat, to bulk up and get ready for the next round of chemo. Didn't. Lost weight. Developed problems from that. Then I couldn't eat.
Have you tried Ensure or Boost? Mmmmm-mmmmmmm.
And water. Water. Water. Water. Keep drinking the water. The drink mix helps.
But then I hit bottom the other day.
Bonnie was cooking some hamburgers for dinner. And they smelled... Good. No, they smelled Great!
And then the weirdest thing happened. I started to crave food. Very specific foods. Lee's Turkey Hoagie with lettuce, tomato and mayo, no oil, no oregano. Kentucky Fried Chicken. Extra Crispy. Spinach salad with pecans and feta dressed with raspberry vinaigrette.
Now these aren't particular favorites of mine. But I guess my body has decided they contain what I need right now.
So now I eat again..

Wish me luck.

R-E-M-I-S-S-I-O-N

Say it with me, now! R-E-M-I-S-S-I-O-N!
No visible leukemia in my bones says my oncologist. So a word of thanks to everyone who prayed and kept good thoughts for me during my hospitalization. Whatever it was, it worked! Thank you all.

Now what?

Well, No visible leukemia ain't good enough. The genetic code to make the bad stuff may still be hanging out in the cells. So guess what? More Chemo!
Starting on the 26th I travel to HUP 5 days a week for a little arsenic. After 5 weeks I get a little break. And then another 5 weeks of arsenic to clean me out again. There will be a third round of the nasty stuff I just had later on, with the whole process finishing in June.

But for now, we celebrate!

R-E-M-I-S-S-I-O-N !

Falling Out Of The Dream Cycle

After you fall out of working life and before you fall out of the middle class, you fall out of what I call the dream cycle. All the dreams you have, “I’d love to retire to…”, “I’d love to sail my boat in…”,”When I finish my book, I’d love to…”, seem to fade away. Replacing them are survival dreams. “I want to see my kids grow up.” “I want to make it through chemo.” “I want to make it through the year.”
Despite my strong positive prognosis, one thing the disease robs you of is certainty. Before leukemia, I was going to live forever. I had all the time in the world. There was no reason to hurry. The disease removes that arrogance pretty quickly.

It leaves the small dreams.

Everything else relies on the big dream: Permanent Remission.

Oh, I Hope I Don't Get Pulled Over...

What do you do when you don't look like yourself anymore?

Looking out from the inside I forget I am not the paunchy furrball I once was. I went to pick up my daughter at daycare and they almost didn't give her to me. Although they knew Katie's daddy was going through cancer treatment, it didn't prepare them for the change in my appearance. Fortunately Katie convinced them I was daddy, but that was after the question, "Who was that guy we've been giving her to?" Who indeed.

I passed a woman at the school who I have known since Cooper was small. She has a son Coop's age and we spent many hours together watching them earn their black belts. She tossed some friendly non-personal conversation my way, but when I responded in perhaps, a more familiar tone than she would expect from a stranger, she withdrew. It took me a few minutes to figure it out.

So I am driving a bit more carefully. Partially because I don't have the platelets for a big mistake, but also because I don't relish the "recovering cancer patient" explanation to the trooper.

As for me, the mirror on the medicine cabinet has a stranger on it. I guess I better get used to him, he's going to be there for a while.

The 40lbs I Always Wanted To Lose

I know 4 or 5 lbs of it was hair, I guess. And January is not the month to test the insulating value of hair. Trust me. Hair insulates like a blanket of R-38 fiberglass. I made the mistake of running outside to start the car without my new constant fashion statement, the touque.
Hoo-Wee! I don't know if the staples conduct heat away faster, or if it was just total rapid skull radiation, but the chill hit the bone pretty quick. So I will be within a few steps of a chapeau until summer comes.

So that leaves the rest of the weight I lost... Now my pants don't fit unless I pull the belt tight past the holes. It's a new look for me, tres vagabond. I guess if I start the sit-ups now I have a shot at having a six-pack for the first time since eighth grade.

What are the odds, do you think?

HOME!

After 36 days in the hospital I am finally home!

My blood counts are coming back strong and my last biopsy looked good. I am so happy to be able to sleep in my own bed. Most of all, being home with the family is the best medicine.

Next steps are still being planned. But for right now, staying home with the family feels pretty darn great.

I Thought I Would Join Up Before I Got Drafted

I got some very good advice from another cancer survivor. He said it was much better to grab the bull by the horns and shave your own head before you find yourself standing in the shower with a handful of hair.

My philosophy about this disease from the beginning has been: Forward! My model has been Ernest Shackleton's ship, Endurance. A sailing ship can't back up. It can only, you guessed it, move forward.

So with that in mind, I asked one of my terrific nurses, Caroline, to bring out the clippers and shave the noggin.

Well, it seems that may have been premature. Here I sit with a head covered in fuzz and no sign of further depiliation.

Live & learn.

The bald scalp does make the steel staples look fierce. Someone remarked the other day that the staples are just outside the hairline. So I will have some scars to brag on down the line. I'm sure my surgeons did what was medically necessary but I can't help but think of the line from M*A*S*H (the movie)

Voice 1: Does anyone know if this is an officer or an enlisted man?
McIntyre: An enlisted man.
Voice 1: Make the stitches big.

Ah, vanity.

I have never been overly-proud of my looks. I have often considered myself the "BEFORE" picture or the picture in the Post Office. But let me tell you with the head shaved and the badass scar, I am definitely the guy you don't want to see behind you at night at the ATM.

Thank Yous & Apologies

First, let me apologize to everyone who has written and not gotten a reply. I am amazed and humbled by the sheer volume of emails from friends and well-wishers. During the first part of my illness I wasn't able to respond as I would have liked to everyone who emailed, but please know your kind thoughts and prayers are very much appreciated.

And of course, many, many thank yous to everyone. I can't begin to express my deep appreciation and gratitude to everyone who has called, emailed, visited, sent cards, offered their time, love, labor and blood, delivered food, physical and moral support to me and my family.

Thank you all. You have a special place in my heart. And always will.

I'm Baa-ack!

So after a month in custody - er - hospital, my head is back on straight, albeit with a few steel staples in it. I am done with my first round of chemo, my bone marrow has been destroyed and reborn and my blood counts are rising fast. The word I hear is that I might be home this week.

Stay tuned.