Melanoma Black Monday

With the best of intentions I’m sure, the American Academy of Dermatology is touting the wearing of orange on Melanoma Monday, May 6, and has invited us all to take part in their “Spot Orange” event to promote “skin cancer” awareness. I’m not sure how these good folks came up with this air ball of an idea, but it’s clear they didn’t consult any actual melanoma patients before launching their promotion. Sorry, AAD, but I’m not going to walk around on Melanoma Monday looking like a giant Cheeto.

Please join your fellow melahomies/molemates/melanistas in wearing black on Melanoma Monday. The official facebook page for Melanoma Black Monday, a counter-cultural event for people who actually have melanoma (and their loved ones and friends) and wish to promote awareness of a potentially deadly disease that “isn’t just skin cancer” by wearing our real awareness color, is:

https://www.facebook.com/events/313045752156540/?ref=2

On this eve of Melanoma Awareness Month, I’ll sign off with the Hotel Melanoma rendition of “Back Where You Belong” from .38 Special…

http://www.youtube.com/watch?v=sz6l0KsgM5s




I heard you're asking how I'm feeling
I guess I'll play it day by day
I'm still around now, my parts are healing
But something's never gonna change
'Cause now I know cure ain't easy to find
I used to glow, now I'm saving my hide

I know that cures, they don't come easy
We’ve looked so long, it's been hard to find
So love, you must believe me
Ain't gonna get it snipped away
I know I was wrong
I want you black where you belong
Want you black where you belong
Black where you belong

I laid around now, I've done some peeling
I found that sun could leave skin through
And so U’s gone now, my head is healing
Don't wanna be that son sun-hued
And so I go, with sunscreening to hide me
'Cause I know what I'm leaving behind

I know that cures, they don't come easy
We’ve looked so long, it's been hard to find
So love, you must believe me
Ain't gonna get it snipped away
I know I was wrong
I want you black where you belong
Want you black where you belong
Black where you belong

I guess sometimes I stop and think it’s over
Everything that I’ve been through
These parts of mine may never find another
Who bugs me just the way mel do
Hey mates

I heard you're asking how I'm feeling
I guess I'll play it day by day
I'm still around now, my parts are healing
But something's never gonna change
'Cause now I know cure ain't easy to find
I used to glow, now I'm saving my hide

I know that cures, they don't come easy
We’ve looked so long, it's been hard to find
So love, you must believe me
Ain't gonna get it snipped away
I know I was wrong
I want you black where you belong
Black where you belong, hey, hey

I know that cures, they don't come easy
We’ve looked so long, it's been hard to find
And so love, you must believe me
Ain't gonna get it snipped away, baby

The First Cut Is The Deepest

Dr. Death, my favorite melanoma oncologist, has kicked me halfway to the curb. I’ve apparently become boring enough as a patient that he thinks he now needs to see me only once a year, with a visit to the hospital’s dermatology clinic six months in between our annual soirees.

I’m not real happy with this idea, although I’m not entirely sure why. Maybe it’s because I think I have more than enough docs on my payroll already and I don’t need to add to my collection of doctor cards. Or it could be that I haven’t seen a dermatologist since I was a teenage jock wannabe with athlete’s foot and have the mistaken opinion these guys are “just skin doctors” I’d go see to fix a tattoo mistake. Perhaps I’m just pissed that I couldn’t get an appointment until mid-June, while Dr. Death would see me tomorrow if I thought I might have a problem.

But I’ll do as I’m told and give them a tryout. All I know for sure is that if I show up and “Spot Orange” in this clinic or they want to biopsy every abnormal mole on my old unprepossessing carcass, there’s gonna be trouble.

To the tune of Rod Stewart’s “First Cut Is The Deepest”…



I would have given U all of my parts
But there's someone who's warned me that’s smart
Black C’s taken just all that I had
But if you want I'll hide from sun again
Baby I'd try to sun again but I know

The first cut is the deepest
Baby I know the first cut is the deepest
But when it come to being lucky I’m first
When it come to sunning me C’s worse

I still want U by my hide
Just to help me dry the tears that I've cried
And I'm sure going to give you a try
And if you want I'll hide from sun again
Baby I’d try to sun again but I know

The first cut is the deepest
Baby I know the first cut is the deepest
But when it come to being lucky I’m first
When it come to sunning me C’s worse

I still want U by my hide
Just to help me dry the tears that I've cried
But I'm sure gonna give you a try
’Cause if you want I'll hide from sun again
Baby I'd try to sun again but I know

The first cut is the deepest
Baby I know the first cut is the deepest
When it come to being lucky I’m first
When it come to sunning me C’s worse

Feel Like A Number

I suspect that everyone living at The Hotel Carcinoma sometimes feels like a number. Soon after our check-in, we’re given a stage number for our cancer. We hear survival statistics. There are numbers for our tumor classifications and dimensions. We experience extended wait times in various departments of our cancer treatment centers that are reminiscent of our last visit to the drivers license bureau (“now serving customer number 64”). A sticker with our clinic patient number is affixed to every blood vial, tissue specimen container, and paper form or report our case generates; and even to us when wearing those lovely wristbands. And don’t even think about contacting the claims department of your health insurer if you’re not prepared to enter your group and patient identification numbers into an automated call answering system.

I wonder if I’ll be given a scanable bar code tattoo the next time I check into a hospital.

So each and every time a health care provider refers to and deals with me as a person with a name, rather than as the “needle biopsy in examination room three”, I really do appreciate the respite, however brief, from feeling like a case with a number. Fortunately, it happens quite often because it seems the vast majority of doctors, nurses and technicians working at cancer treatment centers are genuinely nice people who truly care about we patients. For most of these good folks, we’re people, not procedures. We’re names, not numbers. And for that, I’m thankful.

But for every medic who’s referred to me in my conscious and sentient presence as “the patient”, here’s the Hotel Melanoma rendition of Bob Seger’s “Feel Like A Number”…

See all music videos Bob Seger

I take my card and I stand in line
To see the docs I wait overtime
Feared collectors keep calling for the kale
I work my Black ‘til I’m racked with pain
Some docs can't even recall my name
I show up late and beat docs
It never fails
I feel like just another
Spoke in C’s great big wheel
Like a tiny blade of grass
In C’s great big field
To surgeons I'm just another mole
To tan shills I'm just ‘skin cancer’s’ toll
I'm just another statistic on a sheet
To preachers I'm just a face on aisle
To my Blue Cross I’m just another file
I'm just another lost census ‘til C’s beat

Gonna cruise out of C city
Head down to the sea
Gonna shout out at the ocean
Hey it's me
And I feel like a number
Feel like a number
Feel like a stranger
A stranger in strange land
I feel like a number
I'm not a number
I'm not a number
Dammit I'm a man
I said I'm a man

Gonna cruise out of C city
Head down to the sea
Gonna shout out at the ocean
Hey it's me
And I feel like a number
Feel like a number
Feel like a stranger
A stranger in strange land
I feel like a number
I'm not a number
I'm not a number
Dammit I'm a man
Feel like a number
Feel like a number
Feel like a number
Feel like…

Color Wars

The cancer awareness game reminds me more than a little of the color wars competitions some us participated in at summer camp and the like. Like it or not, we’re competing to win the public’s attention and the money that attention brings to our causes. And we bond with our teammates and grow quite proud and fond of our official team awareness colors.

One of the reasons wearing orange rather than black on May 6, Melanoma Monday, isn’t going to work for me is that I associate orange with a really tacky fake tanning job. (Try entering the words “orange tan” into your favorite search engine and see what truly frightful images you’ll find.) I suspect that Coppertone QT self-tanning lotion has been improved in the forty years or so since I last applied it, but that stuff could leave you looking like a tie-dyed Denver Broncos jersey from the 60’s.

But, oh well, I’ve ranted and pontificated more than enough on this subject so I’ll sign off with the Hotel Melanoma rendition of “Orange Crush” from R.E.M.…

http://www.youtube.com/watch?v=ToVIlrfpBAA



Follow me, don black with me
I've got my spine, I'm not an orange crush
Hear our plea, don't color me
I've got my pride, I'm not an orange crush
We are agents of our C
I've had my sun and now its time to
Serve your conscience over C (Black’s our C, not ‘just skin C’)
Coming in fast, over me

Follow me, don black with me
I've got my spine, I'm not an orange crush
Hear our plea, don't color me
I've got my pride, I'm not an orange crush
We are agents of our C
I've had my sun and now its time to
Serve your conscience over C (Black’s our C, not ‘just skin C’)
Coming in fast, over me

Fry on the roof
Skin like blood,
Another one braised on sun waves tonight,
Sunnin’s in, you're told.

Need mir’cles and need mir’cles and need mir’cles from docs to consider and
lowered on co-payments jacked up all the bucks jacked up and
our spiels to rush and orange crush won’t cut it and all this here Hotel
hell any Hotel it's just like ‘heaven’ here and I was remembering and I
was just in a different country and all then this whirly world that I
headed for I had my nodules pulled off I knew it all I knew every black
mole and every derm doc

Follow me, don black with me
I've got my spine, I'm not an orange crush
Hear our plea, don't color me
I've got my pride, I'm not an orange crush
We are agents of our C
I've had my sun and now its time to
Serve your conscience over C (Black’s our C, not ‘just skin C’)
Coming in fast, over me

Fry on the roof
Skin like blood,
Another one braised on sun waves tonight,
Sunnin’s in, you're told.

Fry on the roof
Skin like blood,
Another one braised on sun waves tonight,
Sunnin’s in, you're told.

The Problem Child

The Skin Cancer Foundation’s website includes a very informative summary of some basic facts about the three major classes of “skin cancer”-- basal cell carcinoma (BCC), squamous cell carcinoma (SCC), and melanoma.  (See http://www.skincancer.org/skin-cancer-information)  In a nutshell:

■  “Usually caused by a combination of cumulative UV exposure and intense, occasional UV exposure, BCC can be highly disfiguring if allowed to grow, but almost never spreads (metastastasizes) beyond the original tumor site. Only in exceedingly rare cases can BCC spread to other parts of the body and become life-threatening.  There are an estimted 2.8 million cases of BCC diagnosed in the US each year.”

■  “SCC is mainly caused by cumulative UV exposure over the course of a lifetime. It can become disfiguring and sometimes deadly if allowed to grow. An estimated 700,000 cases of SCC are diagnosed each year in the US, resulting in approximately 2,500 deaths.”

■  “Melanoma is caused mainly by intense, occasional UV exposure (frequently leading to sunburn), especially in those who are genetically predisposed to the disease. Melanoma kills an estimated 8,790 people in the US annually. If melanoma is recognized and treated early, it is almost always curable, but if it is not, the cancer can advance and spread to other parts of the body, where it becomes hard to treat and can be fatal. While it is not the most common of the skin cancers, it causes the most deaths. The American Cancer Society estimates that at present, about 120,000 new cases of melanoma in the US are diagnosed in a year. In 2010, about 68,130 of these were invasive melanomas, with about 38,870 in males and 29,260 in women.”

The medical profession insists on lumping melanoma together with other “skin cancers”.  And as a recovering attorney with a J.D., not an M.D., I’m certainly not qualified to say they’re wrong.  But a lot of we melahomies believe that we need to differentiate melanoma in our education and prevention efforts, precisely because it is far less common but so much more deadly than BCC and SCC.  (As a teenage sun god lifeguard I was vaguely aware that my excessive UV exposure might someday lead to a “skin cancer” diagnosis, but I didn’t have a clue that it wasn’t easily curable with surgery and was potentially quite deadly in the form of melanoma.)  So when a fine organization with the best of intentions-- The American Academy of Dermatology-- tells me I should “wear orange for skin cancer awareness”  to celebrate Melanoma Monday, May 6, I think they’ve shot an air ball from way outside the 3-point line.  As I see it, wearing anything but black on that day will, at best, dilute our melanoma awareness messages and, at worst, risk trivializing the problem child of the “skin cancer” family.  So I’m just not going to look like I took a dive into a vat of Coppertone QT self-tanning lotion.

Enough ranting, time for some rocking.  To the tune of “Problem Child” from AC/DC…

http://www.youtube.com/watch?v=0KMnFmD_-hk

Cop this

I'm hot

And when I'm not

I'm cold as ice

Get out of fry rays

Protect your hide

Or pay the price

Those I want I take

Those I don't I break

And I might want you

With a fling with the fries

I can change your life

There's nothing you can do

I'm a problem child

I'm a problem child, yes I am

I'm a problem child

And I'm wild

Make my stand

No tan’s bland

On my own

Plans for you

It's up to you

The seed is sown

When I want I stash

When I don't I smash

And you're on my list

Dead or alive got a .45

And I never miss

I'm a problem child, ey

I'm a problem child, yow

I'm a problem child

Just runnin' wild, ha ha

'Eh oo

Just watch your step

UV light

C fright

I hunt for youth

Some run

Some fight

But I win they lose

When I need I hide

When I don't I fright

And I don't like you

So say bye fries

While you’re still alive

Your hide is new

 'Cause I'm a problem child, yow

 I'm a problem child

 I'm a problem child

 I'm a problem chi-ih-ih-ild

 Problem child

 I'm a problem child

 And thy doctor hates me

 I'm a problem child, oh yeah

 I'm a problem child, hey yeah

 Problem child

 Problem child

 Problem child

 Problem child

And you've got troubles, if you’re mine

Problem child

Problem child

Problem child

Problem child

Woh, problem child

I'm a problem child

Problem child

I always bring trouble/Problem child

Problem child

Problem child

Problem child

Problem child

Problem child

I'm a problem child/Problem child

Problem child

Problem child

Problem child

Problem child

Problem child

Nerdy White Boy

I guess I’ve always had nerdish interests. One of my favorite law school classes was corporate tax law. As a practicing lawyer, I became fascinated with the minutiae and regulatory maze of banking and environmental law. And this geeky pattern has followed me intoThe Hotel Melanoma, where I find myself getting paler by the day and reading articles on melanoma treatment research that I understand at the level of someone who found high school chemistry to be magic. One of my favorite facebook pages nowadays is that of the MD Anderson Cancer Center’s melanoma clinic. What’s next, a personal subscription to the Journal Of The American Society of Clinical Oncology?

As I continue to proscrastinate on completing my tasks in preparing for an oncoming spring blizzard, I’ll leave you with the Hotel Melanoma rendition of Foreigner’s “Dirty White Boy”…

http://www.youtube.com/watch?v=LUDMy-GplkQ



Hey baby if you're peelin’ brown
I know what's good for U sunrays

Are you worried what your friends see?
Will it ruin your reputation foll’win’ me?

'Cause I'm a nerdy white boy
Yeah a nerdy white boy
A nerdy white boy

Don't like those “Big Black” scars
Don't fry like Hollywood movie star

You want me to be true to U
You don't give a damn what fries do to you

I'm just a nerdy white boy
Nerdy white boy, nerdy white boy
Nerdy white boy, nerdy white boy
Nerdy white boy

Well I'm a nerdy white boy
Nerdy white boy, nerdy white boy
Nerdy white boy, yeah, nerdy white boy
A nerdy white boy

I've been in Hotel since I don't know when
I'm in Hotel now and I know somehow I'll find trouble again

I'm a loner but I'm never alone
Every night I get one step closer to the danger zone

'Cause I'm a nerdy white boy
Nerdy white boy, yeah, nerdy white boy
Nerdy white boy, I'm a nerdy white boy
Nerdy white boy

C'mon, c'mon boy
Nerdy white boy, white boy
Nerdy white boy, I'm a nerdy white boy
Nerdy white boy

Hey I'm a nerdy white boy
Nerdy white boy, yeah, I'm a nerdy white boy
(Nerdy white boy) boy, nerdy white boy, yeah

Some Guys Have All The Luck

I’m not a fan of cancer survival statistics, because I don’t think they mean much when applied to any particular individual. Plus they can cause us to be unjustifiably gloomy about our personal prognosis-- particularly if we don’t fully understand how to interpret those statistics. (See
http://hotelmelanoma.blogspot.com/2011/05/lies-damn-lies-and-cancer-statistics.html.)

Nevertheless, I get the impression from the medics that I, as a Stage IIIc melahomie who’s healthy and NED almost ten years out of biochemotherapy treatments, am a very lucky member of a pretty small club. And there are times, like now, when I’m not entirely certain how I feel about that. But I think I’m mostly just angry. Angry that the state of melanoma treatment hasn’t moved forward a lot farther and faster than it has over the past decade. And angry when molemates I’ve gotten to know and come to care about a lot just can’t seem to catch a break. Why do some guys have all the luck? Oy.

To the tune of Rod Stewart’s “Some Guys Have All The Luck”…

http://www.youtube.com/watch?v=xK8beW6dGVM



Some guys have all the luck
Some guys dodge all the pain
Some guys get all the breaks
Some guys have nothing to complain

Alone in a crowd, got good drugs, cancer’s cured
and I'm dreaming
The guy next to me has no cure in his arms
My scans are empty
How does it feel when the cure failed for you,
Black C ‘loves’ you
It seem so unfair when there's luck everywhere
but there's none for thee

Some guys have all the luck
Some guys dodge all the pain
Some guys get all the breaks
Some guys have nothing to complain

One drug to take, cancer’s gone and you’re great
Lord let it be free
One drug to try
No one will die from bad UVs
I know I would cry if I ever found out
C was fooling me
Cure’s not just dream, scans are thrill when they’re clean
I am that lucky

Some guys have all the luck
Some guys dodge all the pain
Some guys get all the breaks
Some guys have nothing to complain

Some of my friends have some things that do linger
They have drug ‘fun’
Some ‘fun’ and scares for them, it ain't fair
I got no ‘fun’
My head overheated
I called God and pleaded
There's help when you pray
I called God collect, he always accepts
You have help on the way

Some guys have all the luck
Some guys dodge all the pain
Some guys get all the breaks
Some guys have nothing to complain

But if you were here with me
I'd feel so happy I could cry
You are so dear to me
I just can't let you say goodbye

The Rodney Dangerfield Of Cancers

To a lot of folks who haven’t checked into The Hotel Melanoma, melanoma isn’t a “real” cancer. So many of we melahomies have heard a friend or family member say, when they first learned of our diagnosis, “well thank heavens it isn’t _______ cancer” or “you’re lucky it’s only skin cancer”, which are uninformed but well-meaning statements you’ll certainly never hear from an oncologist.

Because The Pink Nation has done such a marvelous job of raising awareness about breast cancer, it’s unimaginable that a newly diagnosed patient would be told they’re lucky it’s just breast cancer. Maybe we’ll get there someday.  And I think we will.  Until then, all we can do is smile and keep on working together to chip away at the ignorance and indifference.

To the tune of “Stick With Me Baby” from Robert Plant and Alison Krauss…

http://www.youtube.com/watch?v=sOuczlD5KBw



Everybody's been talkin'; they say our stuff wasn't real
That it would soon be over; that's not the way I feel
But I don't worry, honey; let them say what they may
Come on and stick with ‘screen, baby; we'll hide from rays
Yes, we'll hide from rays

Everybody's been talkin'; yes, C news travels fast
They said C’s fire would stop burnin', that C’s flame wouldn't last
But I don't worry, honey; let them say what they may
Come on and stick with me, baby; we'll find our way
Yes, we'll find our way

Come on and stick with me, baby
Come on and stick with me, baby
Come on and stick with me, baby