So this is Christmas
And what have you done?
Another year over.
A new one just begun

I am a John Lennon fan.
One of the happiest memories of my life is dancing with my wife at our wedding to John Lennon’s Love

Love is living
Living love
Love is needing
To be loved

And one of the saddest was the news of his assassination the night before my 17th birthday.

John Lennon’s music has been important to me all through my life.

And then there’s Happy Xmas (War Is Over!)
For my entire life this song has been a tremendous weight on me every Christmas.
It hangs out there as a challenge. Another year gone by. Time wasted. Life wasted.
Every year Happy Xmas (War Is Over!) makes me feel... guilty.

So this is Christmas
And what have you done?

Well this year I finally figured out an answer for him.
This year, with the help of some really great Doctors, the care of the world’s greatest Nurses, the support of my amazing Friends, and the love of my wonderful Family
I KICKED CANCER’S ASS.

How's that, John?
Good enough?

Goddamned right.

Happy Christmas

War Is Over.

What A Difference A Year Makes.

You know it if you have kids, or have ever closely watched kids grow, a year can make a big difference. Last year Katie couldn’t read. This year she reads - everything. Last year Coop looked up to Bonnie. Now he’s taller than she is. Fortunately, he still respects her. We’ll see if that still stands next year when he officially becomes a teenager.

A year ago this week I had barely enough red blood cells to get oxygen through my body. I had barely enough red blood cells to make my blood red. A year ago, I didn’t have enough platelets to keep a simple touch from bruising or to stop my nose from spontaneously bleeding. My blood ran like water. It was more like red Hawaiian Punch than red paint.

A year ago there was a leaky faucet in my brain drip, drip, dripping blood inside my skull. A year ago, I spent my birthday and Christmas in the hospital and New Year’s Eve in the ICU.

A year ago I thought Nursing was a smart career choice. Today, I know a good Nurse is the difference between Life and Death in the hospital. My Life. My Death. If there are angels walking the earth, they work as Nurses.

A year ago I thought that Doctors were overpaid prima donnas who should spend more time with their patients. Today I know they are worth every penny…

A year ago I thought Healthcare Reform was a good idea. Today, I know without a doubt that Healthcare Reform is an absolute necessity. Not just for me and my pre-existing condition, but for our country’s economic and social growth.

I know that the foundation of our democracy, the Declaration of Independence, cites “Life, Liberty and the Pursuit of Happiness” as unalienable rights – rights that cannot be taken away. I know that there is no Life without available healthcare. There is no Liberty when you are chained to a job for fear of losing your health insurance. And there is no Pursuit of Happiness when you live in fear.

The pursuit of profit from preying on the weak and fearful is never mentioned in the Declaration or the Constitution. I think it would be hard to pass any legislation guaranteeing that right. But some people seem to think that is the first and foremost purpose of our democracy: the pursuit of profit at any cost to our fellow Americans. Some people seem to think that successful capitalism requires a steady flow of poor, weak and fearful people. I think that’s lazy capitalism. I think that’s a capitalism that values fraud over innovation and determination. And I think that any form of capitalism that seeks to undermine our lives and families and swindle our neighbors is un-American.

A year ago I was dead but didn’t know it. Today I know I am alive, but will not live forever. And whatever time I have, I hope I can spend it making life a little better for my family and my friends and a little harder on those who seek to steal our life and our liberties and end our pursuit of happiness.

Okay. I Can Explain.

Some of the bulbs were out in the 10 year old snowman. It's easier to replace them while he's inflated.
Bonnie caught me in the act.

That's all.

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

I sent it out as a reminder to friends and loved ones that:
I am still here.
I still have a sense of humor.
And that they should get checked because cancer doesn't care.

The Best Song Ever Written...

...about having cancer.

SWIM by Jack's Mannequin



When I heard this song for the first time on The Daily Show with Jon Stewart it felt like someone had been in the hospital with me or sitting next to me in the chemo chair and writing down the very advice I needed to get through the ordeal.

That's pretty much the story. Jack's Mannequin frontman Andrew McMahon is a survivor of ALL, a particularly nasty form of leukemia. Hell, what am I saying? They're all nasty.

Of course I downloaded it from iTunes immediately. But when I watched the video on YouTube I got another kick in the gut. One of the animated artworks shows a flock of origami cranes forming the word swim. I was instantly transported back to the hospital and the thousand origami cranes hanging around room made by my son Cooper.

I'm petitioning my Congresswoman to add a provision to the Healthcare Reform bill that requires this song to be piped into every cancer patient's room at night when all the visitors have gone home and you wake in the dark surround by strangers and beeping machines. Keep going. You're not alone.

In case you didn't catch all the words:

You gotta swim,
Swim for your life,
Swim for the music,
That saves you,
When you're not so sure you'll survive,
You gotta swim,
And swim when it hurts,
The whole world is watching,
You haven't come this far,
To fall off the earth,

The currents will pull you,
Away from your love,
Just keep your head above,

I found a tidal wave,
Begging to tear down the dawn,
Memories like bullets,
They fired at me from a gun,
Cracking the armor yeah,
I swim for brighter days,
Despite the absence of sun,
Choking on salt water,
I'm not giving in,
Swim,

You gotta swim,
For nights that won’t end,
Swim for your families,
Your lovers your sisters,
And brothers and friends,
Yeah, you gotta swim,
For wars without cause,
Swim for the lost politicians,
Who don't see their greed as a flaw,

The currents will pull us,
Away from our love,
Just keep your head above,

I found a tidal wave,
Begging to tear down the dawn,
Memories like bullets,
They fired at me from a gun,
Cracking the armor yeah,
I swim for brighter days,
Despite the absence of sun,
Choking on salt water,
I'm not giving in,
Well I'm not giving in,
Swim

You gotta swim,
Swim in the dark,
There's no shame in drifting,
Feel the tide shifting and wait for the spark,
Yeah you gotta swim,
Don't let yourself sink,
Just find the horizon,
I promise you it's not as far as you think,
The currents will drag us away from our love,

Just keep your head above,
Just keep your head above,
Swim,
Just keep your head above,
Swim,
Swim,
Just keep your head above,
Swim.

Absolutely Goddamned Right. Keep swimming.

ThankYouThankYouThankYou

There are so many people to thank. So many people who helped me - who helped my family. So many who kept us afloat while I recovered. I can never thank you all and I can never thank you enough.

I don't think I can say it any better than I did at the benefit. So here is the speech I gave that night. Thanks to my sister Nancy for recording it. The night went by in a flash and my memory of it remains a blur. Thanks to all who made that possible.


Thanks to FLAT STANLEY for rocking the place!

And thanks to B101's DAN BLACKMAN, our Master of Ceremonies!

The only words that come to me are “ Holy Shit.”

I look around this place an d see all these people and I am so very grateful – that I have my immune system back.

I can’t help but think… wouldn’t it be great if this was the world’s most poorly timed April Fool’s joke? I feel fine. I just wanted to get all my friends together for a party. It’s a shitty reason but I’m glad you’re all here.

I wanted to clear up the most frequently asked question. I don’t know if you have been on my blog, but the most commonly asked question I get is – just to answer it - Yes, I have leukemia. Yes, it is a form of cancer. And no, it is not the type of cancer they give you weed for. So stop asking.

From the audience: Are you sure?

As far as you know.

This is, uh… somebody came up with the word, “humbling.” And that’s about right. This is amazing. I don’t know how to handle all this attention. I’m sure my Dad is up there somewhere walking in circles and shaking his head. But what I know of grace I have learned from my Mother. So I will try to do this as gracefully as possible.

Thank you all for being here. Thank you all for coming out. It’s just – humbling.

I need to mention a few names out of many hundred. First of all, every day I go to get chemo at a place called the Perelman Center for Advanced Medicine. Which is, if you haven’t been there is like the starship Enterprise. It is going to make Philadelphia a world class center for cancer treatment. When I walk in in the morning I walk past this large bronze of the names of the people who have donated to make that place possible.

Two of the names are Ellen and Jerry Lee. Ellen is on the board of the Abramson Cancer Center and Jerry is the founder with Dave Kurtz of B101 Radio, our sponsor here tonight. It is great to know people who can look beyond the horizon and see what we will need not today or tomorrow but in ten years and in the future and bring that here to Philadelphia. So I want to thank Ellen and Jerry Lee.

So many people at B101 have done amazing things to make tonight possible. And I want to thank them. I really want to mention two names, General Manager Blaise Howard and Station Manager, Bill Boone. For two reasons. The first of which is, when I got sick and Bonnie had to come and help me, the only thing they ever said was, “Go!” And that is amazing.

The second reason which is somewhat less prosaic. In this business environment when people are looking to cut back, they have made the business decision to invest in their people and not cut back on things like health insurance. And I can tell you that I am not the only person in this room whose life that has saved. So thank you for your business acumen and for taking care of your people.

That brings me to the Gang of Six. Bonnie and I have had nothing to do with this party tonight. There are six people here who have put this all together and have done an unbelievable job.

Jeanne Behr. Where’s Jeanne?
The amazing Maria Sylvester
Heather Crosby.
The great Brian Kaiser
The great John Costello.
And my dear friend Alan Barlow.
If you’re having a good time, it is because of them.
From the audience: And if you’re not, it’s not our fault.

I gotta tell you that in addition to this, they are truly dear, dear friends who, when I got sick were there for whatever we needed. Whether it was dinner or watch the kids or whatever, they were there and I am truly forever grateful.

I think I have some nurses here tonight. Where are my nurses? There they are. I invited all of my doctors but none of them RSVP’d so to hell with them. We can talk about them. There is something with this health plan I am on. Somehow I got on the Hot Nurses program. I’ll tell you that when somebody is waking you up every 15 minutes to take your blood pressure it really helps stop you from taking a swing at them.. I am convinced that the University of Pennsylvania could increase their endowment if they all just had a calendar or a video. Nurses of the Hospital of University of Pennsylvania. Not a great title, but there are a few dozen producers here tonight. So, Girls…

If there are angels walking the earth, the odds are they are nurses. I spend a lot of time – as do many of you – working in and around the healthcare field. And until I was part of it, I never really understood it. And I will say this tonight – because my doctors are not here tonight - that a doctor may cure you, but a nurse will save your life. Thank you.

There is a list – longer than I am tall – of people who sent cards and emails and brought food to the house and who appeared out of nowhere. People who I have not seen in 10 or 15 years who when they found out that I was sick came to my rescue. And I can never thank them all enough. And I can never thank you all enough for a thousand kindnesses. So please accept this big blanket thank you for everyone.

You can’t do this without family. They have been there for everything that we’ve needed. Many many years ago when I was young and stupid.

(My sister) Nancy: Amen!

I said to my friend Tony, Why would anybody ever want to get married? Now that I am older and wiser… wise-er – I have come to realize that if you are very very lucky you get married and you get to spend your life with someone as wonderful as my wife Bonnie. If you ever need a reason to live – that’s it. That's my reason.

That’s pretty much it. I just wanted to say just one more thing. And that is... Every Christmas – including this past one, my family sits around the TV Christmas Eve and watches “It’s A Wonderful Life.” And this Christmas we did the same thing in the hospital. Bonnie, me and the kids sitting on the hospital bed watching “It’s A Wonderful Life” on my little 12 inch laptop. And it was great to feel a little normal.

I have always loved that movie and I have always felt that it was movie that made you feel grateful for, uh…

[John hands Dave a tissue. Everyone laughs. Dave dabs at eyes.]

It’s coming…

It always made you feel grateful for what you have. Tonight I understand the ending of that movie. George Bailey, Jimmy Stewart, gets a book from Clarence the angel and it says, “No man is a failure who has friends.” And tonight, like George Bailey, I am the richest man in town.

Thank you all. Thank you very much.

My First YouTube Video

Vice President Joe Biden sent out a request for videos to help destroy the myths about Healthcare Reform.

Hey Joe, you asked for it...

The Road Back

I’m not who I was.

I would be a fool to have gone through all of this and remain unchanged. I’m not a “saintly” cancer survivor who now enjoys a love of all mankind. Nor am I on a quest to “live for today.” I have too many responsibilities to the future to do that.

I feel like Tom Hanks at the end of Castaway. I am at a crossroads. Which road do I take? I know my road back will lead through physical rehab – and a much longer physical rehab than I initially expected. I guess you can’t sit on your ass for 8 months at age 45 and just bounce back. So I envision my road will include many, many laps in the pool.

I know my road back will have to include doing what I can to help the Leukemia and Lymphoma Society and cancer charities in general. Every hour of every day there are 5 more people like me getting bad news. We must develop tests for early detection of all cancers to give people a fighting chance and we must never stop working for a cure.

I know my road back will include working for a more secure future for my family. Fool me once…

I hope my road will include more laughter, more time with friends and family, making work more fun and working hard at play. I need to be deadly serious about the things I care about and take myself much less seriously.

I will need more tolerance, courage and wisdom on the road. But who doesn’t?

Here I am.

Now, where to?

Happy 4th of July!

Had a GREAT 4th of July.







Katie & Coop took First and Second Place (respectively) in the Plymouth Meeting 4th of July Parade Costume contest.







Had a great picnic with Family.
Took a nap in the hammock.








Watched some fireworks.








Why am I bothering to tell you about all this?
Because absolutely none of it has anything to do with cancer.

Just like me.

Sing It, Sister!

There's A Lot Of Love In This Room Right Now

The French have a phrase: joie de vivre.
But that's just me being pretentious.
We say it even better: THE JOY OF LIFE
Let me tell you, I've got it in spades today, my friends.



After the morning psych-out (results not available), I got a voicemail this afternoon.
Want to hear a joyful noise masquerading as an ordinary voicemail?
Listen To This: DORIS' VOICEMAIL



What does this mean?
Well for me it means that for all intents and purposes, I no longer have leukemia.
It means that the amazing doctors and nurses at Penn and the Abramson Cancer Center have not only eliminated all leukemia cells from my body, they have also destroyed the bad RNA which caused the disease to begin with. I am now in TOTAL REMISSION and completely cancer-free.



Does this mean it could never come back? Of course not. I could also get hit by a bus tomorrow, too. But that's why the word remission is used and not cure. Only time will tell if it is permanent remission.



Right now I am filled with love and appreciation for everyone who has helped me and my family through this ordeal. I am so very grateful for the amazing doctors who helped get me into remission. The research scientists who worked to develop the treatment, and all the other leukemia patients who selflessly tested it.



I am extremely fortunate to have incredible nurses who kept me alive through this process. Far too many to name here, I am also too far in their debt to ever repay the thousands of kindnesses and the professionalism that saved my life.



And the virtual army of family, friends and colleagues who helped us make it through all this.



Most of all, I am so very thankful for Bonnie. She is the rock upon which our family is built; the very heart and soul of all that is good in my life. If I am alive, it is because every single day of my life she has given me a reason to live.

Today is a beautiful day, my friends, whether you know it or not.

So take it from me, Life IS Good.

Do You Want The Good News Or The Bad News?

Well, the good news is: There is no bad news.

The bad news is: There is no news. Period.

Apparently, when they said, "Five working days," what they really meant was, "Up to two weeks."

Funny little trick, huh?

Please direct all complaints to my oncologist at (215) 618-24..... No. That would be wrong.

Cancer's Many Gifts #1

Of the many gifts cancer has given me - and they are many - the most unusual is new hair.
I now have the same hair as Kung Fu Grip G.I. Joe

Tick – Tick – Tick

Clock is ticking. (get it?)

Today I had my (hopefully) final bone marrow biopsy.
Boy, it sure was a sight. Super-Oncologist Alison Loren, MD, MS, AWESOME, who, to be frank, weighs about a hundred pounds soaking wet, standing on a stool over yours truly with a biopsy needle (picture a turkey baster with a ten-penny nail on the end) digging through my pelvis bone for marrow to send to the lab. And yes, I wrote, digging.
I wish I could describe it in more detail but I was lying on my stomach on the exam table pretending it didn’t hurt. Bonnie could describe it better. She’s seen five of these now.
Five.
Five.
The first two were at Chestnut Hill Hospital. They did two because they couldn’t get any blood or marrow out of the bone the first time. In the middle of the procedure, the hematologist said, to his crowd of students, “you sometimes see this in leukemia patients.” This was the first time the word leukemia had been mentioned to us and it came out accidentally.
That’s some bomb to drop so casually.
Anyway, back to today’s biopsy.
Couldn’t sleep last night. Why? Well the test itself is no big deal, as dig-a-hole-in-your-bones tests go. But to put it academic terms, imagine a pass-fail final that you can’t study for. You pass, and you get your life back. You fail, and you have to repeat the class. And all the labs.
So now we wait for the results.
But wait, you say, you’re in remission! Yes, well there is remission and there is REMISSION.
If you were to examine my blood under a microscope right now you would find no evidence of leukemia. The treatment has worked. But the underlying cause of the disease is some damaged RNA inside two chromosomes in my cells. If the RNA have been corrected by the chemotherapy, they will no longer reproduce cells with damaged chromosomes and I will stay in remission, theoretically, forever. If the RNA is not corrected, they could, at any time begin to reproduce the damaged chromosomes and eventually allow the leukemia to return.
That’s not going to happen. You know it. I know it. But we have to prove it to medical science.
So right now my bone marrow is being sent to a specialized lab where they will examine my cells down to the molecular level and begin counting the millions of chemical combinations that make up the RNA of a bone marrow cell.
Forget what you’ve seen on CSI:Miami. It takes five working days.
Five working days.

Tick-tick-tick…

And What Have We Learned?

I have learned many things during my cancer treatment. I have learned much about myself and my family. I have learned about life. I have learned many things about the high quality and character of my friends and colleagues.

But there are many lessons that are difficult to discuss. There are things – important things – that are not, shall we say, ready for prime time. But these important facts should be known by everyone because statistics bear out the sad truth that everyone – everyone – will be, or will be close to, a cancer patient in their lifetime.

An Example:

Be kind to – take very good care of - your sphincter ani externus.
Why do I obfuscate in Latin? Those easily offended now have fair warning to move on. Those interested can easily Google it.

Take very very good care of your sphincter ani externus. Because regardless of what kind of cancer you have – leukemia, prostate, breast, bone, skin, liver… And regardless of what kind of treatment you get – chemo, radiation, alternative, herbal… Your sphincter ani externus will be affected.

Part of the difficulty of any treatment is managing the side effects. And almost all the side effects for any treatment have some negative impact on your sphincter ani externus. One day it might be too much, and the next few days, too little. Either way, proper respect and tender loving care must be paid. You don't want to be cured of cancer only to succumb to an e coli infection.

And they sure don’t tell you that in the brochure.

Another thing I have learned is that discussing the minutiae of your bodily workings with your spouse is a real buzzkill. I understand it is necessary. But you know what? Before she was my wife she was my girlfriend. And before that, she was the hot sixteen-year-old I lured to the drive-in.
So daily comprehensive discussion of my bodily fluids and fuctions… I mean, Man! Come on!

Yesterday I was frustrated with the graphic detail of my daily health report. So I decided to use my talent for spin. When Bonnie asked how I was doing down there, I replied I felt like the prettiest guy in the Gay Pride parade.

She laughed. And laughter, I have learned through all this, is the absolute best thing in the world.

DONE!

No, no, Thank YOU

My nurses gave me this award for my last day, plus a going-away feast of chocolate-covered fortune cookies. All the fortune cookies had excellent fortunes. Just like me.

ONE MORE DAY

One More Day.
One more trip to Penn's Perelman Center for chemo.
Sure I'll be back from time to time for tests and such.
But only one more day of poisonous chemicals invading my body.
I will not miss the treatment, but there are people I will miss.
I will miss the incredible professionalism of my oncology nurses at the infusion center. Professionalism, wrapped in laughter and joy. I will say this again because it bears repeating over and over until the world acknowledges the vital truth in it: A doctor may cure you, but a nurse will save your life.
And I will miss my brothers and sisters in arms. My comrades in cancer. Although I know far too few by name, their strength and good humor through obviously terrible adversity has lifted me through this. They are a constant reminder to me of how fortunate I am. Fortunate to get a cancer that has such a high rate of remission. Fortunate to be treated by the top medical professionals at Penn, a world-class health facility. Fortunate to have an incredible support system of friends to pull me through this. And fortunate to have a family whose endless flow of love is the very reason to live.
Compared to my comrades in cancer my path has been an easy one. In my heart of hearts, I hope that my easy manner and good humor during our all-too-brief interactions represents something too: Hope.
In my secret dreams I want to be the poster boy for all that has been accomplished in cancer treatment. And I want to represent all that will be accomplished for all the cancers left to be cured.
Some of you might think I am getting ahead of myself. I am not "cured." From what I have learned there is no such thing as "cure." There is only a remission that can eventually become a permanent remission. To borrow from Thomas Jefferson, eternal vigilance is not only the price of liberty, it is the price of remission.
I am borrowing a lesson from all the sales training I have worked on: Assume The Close. Until someone tells me different, I am done with leukemia and on my way back to living a normal life. Hopefully, a much better person for the experience.

See you soon.

Life Without Leatherman

From the Random Thoughts Category
(and believe me you have plenty of random thoughts on chemo):

They took my Leatherman tool from me in the hospital and Bonnie brought it home. I have not used it since I was diagnosed.
This is the longest period of time I have gone without some sort of Leatherman or Swiss Army knife in over 30 years.

I come from a long line of pocket knife people. My Dad also included a pocket magnifying glass and a pocket tape measure in his daily kit. As I prepare for my return to real life next month, I suppose I shall have to dig the boys out and see how they feel again. Like I said, Random

C'mon! Get Up And Dance With Me!

Oh yes. It's Official.
Remission.
Say it Loud & Proud.
RE-MIS-SION
Proof? Proof, you say?
Certainly.
Here is my MyPENNHEALTH page featuring my current diagnosis:

What does that mean?
Well, as I am sure you either know or suspect, nothing happens in a hospital until the computer code gets changed. Yesterday, my diagnosis code was changed from Acute Myeloid Leukemia to Acute Myeloid Leukemia in Remission
My blood counts are back to (low) normal in less than a week. And I have one more round of chemo starting next week before we put this bitch to bed for good.
Or, to put it in a more horrifically graphic way - which I find more viscerally satisfying- The leukemia is sprawled out on the floor and I am standing with my heel on it's throat, slowly increasing the pressure and waiting to hear that satisfying crack as I crush it's spine.
Too much? Perhaps.
But boy, it sure feels good.

Can't Swim? Hell, The Fall'd Probably Kill You

Sorry I haven't written in a while. I wish I could say I've been busy.
I've been waiting. For blood to go. For blood to return. For a fever that may never come.
You know. Same cancer shit. Different day.
I know I bellyache about the poisonous chemo. But it is extremely safe and my condition is well managed.
And then... there are the side-effects.
You never know what you're going to get: constipation, diarrhea, peripheral neuropathy, itching, dry skin, sweats, hemmorhoids, hair loss, hair gain, and on and on and on...
And then there is Neutropenia. With my immune system down anything goes. What will it be? A stray virus? A little bacteria in my fruit juice? A little e coli?
So how goes it? It goes well. I have survived the chemo and I am riding out the side effects.
So I've made the jump. Let's see if I can swim.

I'm Really Not A Trekkie

But try and tell that to Coop.

Here is some more of his Photoshop work.

The Future Ain't What It Used To Be

Yogi Berra said that.

It would be nice to think that quote was from somebody like Isaac Asimov, but Yogi said the words first - whether he knew it or not.

Caught in the grips of self-analysis brought on by my recent introduction to mortality, I can't avoid questions like, "What am I leaving behind for my children?"

Most aspects of that question are too big to actually contemplate. Global warming makes me pessimistic about the environment. The economy makes me concerned over the future of the middle class. Politics makes me concerned for social progress. Government makes me lose heart over prospects for peace in the world.

You see? Too much. That way lies madness.

But Star Trek... I can handle that in my diminished capacity. What kind of Star Trek am I leaving to my children?

I grabbed Coop after school and we high-tailed it over to the 4pm IMAX. As we took our seats, I was once again surrounded by the warmth of Trekkers loudly expounding on themes from episodes long-past. It was 1979 again and I was ready to see the new adventures of Kirk, Spock, McCoy and the rest on the final frontier.

I watched for two hours as my history with the United Federation of Planets was erased and rewritten. This is a "rebooting" of Star Trek. It is definitely not this old man's Star Trek. It is a faster, funnier, more flash, less philosophy version of the famous crew. There are holes and problems. There always are. But who knows where it will go from here?

Coop loved it. And he loved it for his own reasons. What drew him into the story and the characters was not what had drawn me into the original Star Trek series. He was challenged by different ideas than I was as a kid.

And perhaps that will be how he will handle all the other legacies as well.

That's the future, isn't it?

Feliz Cerdos de Mayo!

Chemo Day 2 and all is well.

Once More Unto The Breach, Dear Friends, Once More

Bill Shakespeare, Henry V

I got my first dose of the ruby red poison this morning after being amply premedicated to prevent nausea.
"Premedicated," now there's a word. Is it a paradox or an oxymoron? They premedicate you with medicine so...

I digress.

My most excellent Nurse Julie pushed it into my IV and I watched red line in the tube snake into my chest. I expected a bigger reaction. I expected to feel something. But all I felt was my own anxiety. I popped an ATRA and drove home.

Now I wait. I wait for my hair to fall out again. I wait to see if I get diarrhea or constipation on the side effect roulette. I wait for my blood to die.

And I wait to go back tomorrow and do it again.

Before You Ask

The new Profile Photo of me shows a number of scrapes. They are nothing to worry about, my dear family and friends. They are the result of an unfortunate collision of face and floor. More embarrassing than painful.

But as they said in Junior High Health class, "If you have rug burns on your face, you are doing it wrong."

And so I am.

Why Can't We Be Friends?

The leukemia I have - APML - is caused by two damaged chromosomes, numbers 15 & 17, pictured above.

The chemotherapy I am getting is designed to repair the damaged chromosomes and get them to play nice in the future.

I'm looking for some kind of 12 Step Program they can get into. If you know of a meeting I can get them to, please let me know.

Daunorubicin My Old Friend, We Meet Again.

It's a love-hate relationship at best. This drug is a carcinogenic poison that could damage my organs and will destroy my bone marrow and my immune system and make me vulnerable to every virus and germ floating by.

Hello Swine Flu!

Of course it will also save my life.

So I am... conflicted.

I get three doses of the drug this week and seven doses of ATRA so I can kick this bitch to the curb. Wait, no... I mean achieve permanent remission.

So, hold on. Here we go!

Fear.

LITANY AGAINST FEAR

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

- Frank Herbert, Dune

I have carried this in my wallet for decades. I am not a big fan of the Dune series but I found that this particular bit of writing spoke to me. My kids are too young to share this with yet, but one day I will show it to them and explain why it has meaning for me. Like all children, they will take what they want from the lesson or ignore it completely.

I am also fond of a quote that is something of a corollary to the Litany. Variations on it have been attributed to Ambrose Redmoon and Mark Twain and others, but Dan Rather distilled it's essence quite nicely:

Courage is being afraid but going on anyhow.
- Dan Rather
That is something I have always taught my kids and something I try to live. I try.

People who don't enjoy or don't "get" Science Fiction often miss the point. The best Science Fiction is not about spaceships and phasers. The best Science Fiction is about human truths even in the most alien worlds.

George Lucas knew that when he based Star Wars on Joseph Campbell's Hero's Journey. Luke Skywalker is just another face of The Hero With A Thousand Faces - the myth common to most human cultures. It is a part of our shared humanity.

Despite the fans dogged dedication to the minutiae of Starfleet, Star Trek would be nothing without the story of loyalty, friendship and dedication of the main characters, the lessons learned on the many planets, and the Kobayashi Maru scenario, the no-win situation.

As a cancer patient, I and most of the cancer patients I have met, share the philosophy of James T. Kirk. We don't believe in the no-win scenario. It is a philosophy you might not develop on your own. So it is nice you can get things like that from Science Fiction.

It takes courage to defy the no-win scenario. Courage, in spite of the fear. I see that courage on the faces of my fellow patients sitting in infusion chairs at the Perelman Center. Others may not notice it behind the pain or the concentration or the practiced coolness we all affect. We can't fool the nurses and we can't fool each other. We know we all share the fear.

There is another lesson from Science Fiction which I have shared with my kids. It comes from Batman Begins of all places. They may not share my enthusiasm for Batman, but they have learned this lesson:

"Why do we fall?
So we can learn to pick ourselves up again."
- David Goyer & Christopher Nolan, Batman Begins

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...

Party Pictures

Benefit Photos
pass: b101

A very special thanks to Brian Miller of Chorus Media Group , our personal paparazzi, for the most excellent photos.

Was That A Party Or What?

"When you wake up in the morning with your head on fire and your eyes too bloody to see..."

It took forever to get to sleep last night. I woke up exhausted this morning with a sore throat, a headache and ringing in my ears. I didn't have anything to drink so I can only describe this as a Love Hangover. Last night's party was one of the most amazing experiences of my life. I have so many people to thank for their kindness and generosity. But I am afraid it is going to have to wait until I recuperate.

Thanks everyone...

More of Coop's Photoshop Work

We're Havin' A Party

I’m told it is shaping up to be the Media Networking Event of the Spring.

SATURDAY MARCH 28 6 – 9 PM
BROWNIES 23 EAST
23 E Lancaster Ave Ardmore

FL@T ST@NLEY LIVE!
MC DAN BLACKMAN from B101
BEER WINE FOOD RAFFLES

...and ME!

More Details

Gonna Buy Five Copies For My Mother!

Some of Cooper's Photoshop work...

I Was Cleaning Out My Computer...

My son Cooper wrote this while I was in the hospital.

My Family
By: Cooper Smith


My family is a flower.

My mom is the bulb because she always nurtures us and feeds us so we can become strong.

My dad is the root because he is strong and keeps us in place.

My sister is the flower because she is young now but she will grow into something beautiful.

My cat and dog are the leaves because they are on the opposite side of each other and they are branching off the family flower.

I am the stem because I always support the family and I am strong inside and out.

My family is strong together. Without all parts we would be weak and collapse.

TWO WEEKS OFF!

I Have No Words

My Life As A Cartoon

Up until recently, Brad Guigar drew Philly Phables for the Philadelphia Daily News. I contributed two stories before the plug got pulled. He would have liked the Giant Leech story or one or two others from the blog. Check out some of his other work online at Guigar.com He's an amazing illustrator and cartoonist.
Here are the two stories I contributed:
Some Of Them Look Good In Tights
Some Are About Doing A Good Deed

Janet Jackson's Got Nothing On Me

Remember Janet Jackson's Super Bowl nipple accessory that caused such a stir?
Pish-posh, I say.
Wanna see some serious nipple jewelry?

This is called a Hickman Catheter. It runs from my chest up under the skin to my jugular vein. Then into the jugular vein and down to the superior vena cava near the right atrium of the heart or what they call ("they" meaning me) the body's chemo mixing bowl.

The drugs used in chemotherapy can be so poisonous that they need to be administered to the body in the most diluted way possible. Daunorubicin, one of my chemo drugs in the hospital, is so poisonous that it would eat away the vein and surrounding flesh if administered through a standard IV. With the Hickman it is slowly (and manually) pushed into the Hickman directly to the vena cava. There can be some minor heart damage from the drug, but it is the least harmful way of getting the most effective drug into the system.

There are two tubes in the Hickman which allows multiple drugs to be administered or blood to be drawn without a needle stick.

Me? I'm just looking forward to all the stares at the beach.

One More Week!

Say it with me people:

One More Week!
One More Week!
One More Week!

One more week of arsenic before my two week break. Two whole weeks for my system to recover from the onslaught of deadly poison being pumped directly into my veins every day.

It has been pretty easy going with the arsenic so far. But just recently my system said started saying, "Enough of this shit!"

My white count has dropped a bit, not putting me in the DANGER WILL ROBINSON! category, but definitely in the Be Careful category. This explains why I need the afternoon naps, I guess. So no sushi. No raw vegetables. Only fruit with thick skins. Yummy.

Anyway that's the reason for the two week break. Hopefully the coming week won't kick my ass too hard and I can keep writing these little ditties for you.

Either way, I'll let you know.

Another Short One

Well there is one good thing I can tell you about chemotherapy:
It sure clears up your skin.
Not that I am recommending it over Clearasil or anything...

A Quick One

The last post was pretty long so here is a quick one...
I had a follow-up with my neurosurgeon to check his handiwork on my noggin. All better now.
I don't think he appreciated me calling him, "McDreamy," though.

Dispatches From The Hospital Room 3

More of my experiences in the hospital during December.

My oncologist came into my hospital room trailed by an uncommonly large retinue of interns, residents, fellows, and cancer groupies. I raised the head of the bed to listen. He had spoken, vaguely, of a cutting edge treatment for which I was eligible that was under study at the hospital. A nurse wheeled in an incubator with something squirming swaddled in a blue blanket.

My doctor explained that the new treatment for my type of leukemia required the filtration of the leukemia cells from my blood and the Genetic Research department of the University had engineered a new lifeform to accomplish this.

From the incubator he lifted a tube-shaped object about 2 and a half feet in length and 2 feet in diameter. I was intrigued until I noticed the tube wiggled by itself like a piglet that doesn’t want to be held. The idea wasn’t new, he continued, medical science had used leeches to bleed patients since ancient times and they are currently used with great success in draining blood after reconstructive surgery.

He handed me the tube. It weighed about the same as a terrier puppy and wiggled almost as much. It was warm to the touch and its skin felt like the nylon cover of a neoprene support brace. It smelled coppery – like blood, but with a sickly sweet finish. Surrounding the holes on either end of the thing were a brush of needle-like extensions that I can only assume were teeth.

Before the wide-eyed and excited crowd my doctor told me that this thing had been bio-engineered right there at Penn. And while it wasn’t a leech, its DNA was based on leech DNA but it was designed to attach itself to me, suck out my blood, filter out only the leukemia cells and return my clean blood to my body. The neat thing, he told me with pride, was when the leukemia was all gone, the thing would starve, die and drop right off my body. Cured.

One doctor opened my shirt. One end of the thing turned like a cobra and struck against my right pec. The sensation was like getting an over-enthusiastic hickie followed by a pleasant numbness. The other end attached itself with some force to my left ribcage. That side burned and swelled.

I was sweating. I looked around the room. I knew every face in the room. No one looked out of place. I could smell them. The air was thick from their breathing. The thing wiggled on my chest. My doctor smiled – a bit too much, I thought. He reached forward and patted the thing on my chest. I could smell the ever-present sanitizer on his hands. I could hear IV pump alarms outside the room and the soft sound of carts being pushed in the hall.

I looked everywhere for a hole. There had to be a way out of this world somehow. I felt the sheets beneath me. They felt every bit as real as they do now. I tried to rise from the bed, but the thing on my chest reset its grip on my flesh forcing me to stay put.

It was then I noticed behind my doctor – where the bathroom ought to be – was a stained glass window. My mind wrapped itself around the fatal flaw in this scene and I clawed my way back to reality.

This was no dream. I had not been sleeping. I watched the crowd disappear from my room, followed by my doctor. And when I looked down, the thing on my chest was gone, too. I sat in my hospital bed panting in sheer panic. Which was worse? Seeing a giant leech on my chest, or thinking I saw a giant leech on my chest?

Now I am no stranger to “seeing things.” I am, after-all, of the generation that spent Saturday nights watching 2001: A Space Odyssey at the Midnight Movies. Over and over again. I have been known to have conversations with inanimate objects and people that were not there. But never in my life have I had a fictitious experience as real as this one.

Maybe it was the fevers or the Dilaudid or the loneliness, strangeness and isolation of night in the hospital. Maybe it was the combination of things. But from time to time I still feel the weight of the Leech as it wiggles, smell its sweet coppery stench as it sucks on my chest.

Such is the anatomy of a hallucination.

Dave In Wii World