A Service Dog

We lost our beloved Jordan yesterday, after thirteen years filled with an abundance of love and long walks in the nearby woods. He was the dog I never thought I’d outlive. But somehow I did. And I’m just plain shattered by the loss, perhaps because Jordan was such an indispensable part of my physical and emotional healing from surgeries, and biochemotherapy and radiation treatments. Jordie wasn’t formally trained to be a service dog, but boy would he ever have made a fine one. He was a wild three-year old when I underwent biochemotherapy, but when I was so weak I could barely walk he knew it and happily walked me around the cul-de-sac at a snail’s pace. And as the days went by and my strength slowly returned, he’d gradually pick up the pace, lead me onto wooded trails and lengthen our walks. When I was bedridden, he was glad to snuggle in and keep close for hours at a time. I couldn’t have done it without you buddy. And I pray that there won’t be a “next time” when I have to.

For Jordan and all of our canine ‘nurses’ who make life at The Hotel Melanoma so much more bearable, here’s my version of Louis Armstrong’s “What A Wonderful World”…



I see trees of green,
Dog noses too.
I see them glued,
At me and you.
And I think to myself,
What a wonderful world.

I see skies of blue,
And snouts gone white.
The bright blessed days,
The snug canine nights.
And I think to myself,
What a wonderful world.

The goldens make the pain slow,
So pretty when they lie.
And also slow their paces,
Their people getting spry,
I see dogs shaking hands.
‘Saying’, "How do you do?"
They're really saying,
"I love you".

I heard puppy’s cry,
I watched him grow,
He learned much more,
Than I'll ever know.
And I think to myself,
What a wonderful world.

Yes, I think to myself,
What a wonderful world.

Oh yeah.

Can't Break My Eyes Off Of You

Yesterday’s post was so kindly received by my melahomies of the ocular persuasion that I thought I’d try another one. But this time on the lighter side.

Hoping for some new pharmaceutical breakthrough treatments for ocular melanoma, here’s an ode to OM to the tune of “Can’t Take My Eyes Off Of You” from Frankie Valli & The Four Seasons…



You're just too rude to be true.
Can't break my eyes off of you.
You'd be like heaven to bust.
I wanna scold you so much.
At long last drugs have arrived.
And I thank God I'm alive.
You're just too rude to be true.
Can't break my eyes off of you.

Pardon the way that I care.
There's nothing else to compare.
The fright of you leaves me weak.
There are no words left to speak.
But if you feel like I feel.
Please let me know that you’ll reel.
You're just too rude to be true.
Can't take my eyes off of you.

I’ll shove you baby, and if it's quite all right,
I’ll beat you baby, and scorn this lonely plight.
I’ll shove you baby.
Trust in me when I say:
Oh ‘pretty’ baby, don't bring me down, I pray.
Oh ‘pretty’ baby, now that I found you. Pray.

And let me shove you, baby. Let me shove you ...

I’ll shove you baby, and if it's quite allright,
I’ll beat you baby, and scorn this lonely plight.
I’ll shove you baby.
Trust in me when I say:
Oh ‘pretty’ baby, don't bring me down, I pray.
Oh ‘pretty’ baby, now that I found you. Pray.

Oh pretty baby. Trust in me when I say: Oh pretty baby ...

In Your Eyes

If you’ve ever felt lonely and isolated as a melanoma patient living at The Hotel Carcinoma, try walking in the shoes of an ocular melanoma (OM) patient. According to the Melanoma Research Foundation’s CURE Ocular Melanoma website, “OM occurs in approximately 6 people per million per year, while invasive cutaneous (skin) melanoma occurs in approximately 1 in 50 people per year”. That’s only about 2000 new OM patients diagnosed each year, and if you’re one of them you very likely don’t know anyone else with the disease.

Just about the only thing OM has in common with its cutaneous ‘cousin’ is that it originates in our pigment cells (melanocytes). OM usually starts in the area of the eye called the uvea. OM doesn’t demonstrate the same genetic mutations as cutaneous melanoma, and has its own distinct set of genetic alterations. It generally doesn’t respond well to chemotherapy, so surgery and radiation are the standard first-line treatments. About 50% of OM patients will develop metastatic disease within 15 years of their original diagnosis, and 90% of metastases involve the liver. Once the liver is involved, OM is current incurable. There are currently no FDA-approved treatments for metastatic OM, and that just has to change. Soon.

Even though I’d already been living at The Hotel Melanoma for several years at the time, I don’t think I’d ever heard of OM until a former colleague was diagnosed with the beast and he reached out to me for support. Sadly, by the time he was diagnosed his OM had already metastasized to his brain and he died within a matter of weeks. Please support the efforts of the Melanoma Research Foundation and other organizations to find a cure.

I haven’t walked in the shoes of an OM patient, so please forgive me if I get this one wrong. But for John, and all who have battled OM, here’s The Hotel Melanoma rendition of Peter Gabriel’s “In Your Eyes”…



Mel, I get so lost, sometimes
Days pass and this emptiness fills my heart
When I want to run away
I drive off in my car
But whichever way I go
I come back to the place you are

All fright instincts, they return
And my brave façade, so soon will burn
Without a noise, without my pride
I scream out from the inside

In my eyes (In my eyes) the fright they treat
(In my eyes) I must compete
(In my eyes) I see the doorway (In my eyes) to a thousand cure drugs
(In my eyes) The resolution (In my eyes) of all the fruitless searches

(In my eyes) Oh, (In my eyes) I see the fright that they treat
(In my eyes, the fright they treat) Oh, (In my eyes) I wanna to see this complete
(In my eyes, the fright they treat) I wanna to end the fright, the beast I see in my eyes

Mel, I don't like to see so much pain
So much wasted and the soul mates keep slipping away
I get so tired of working so hard for our survival
I look to a time past you to keep me still brave and alive

All fright instincts, they return
And my brave façade, so soon will burn
Without a noise, without my pride
I scream out from the inside

In my eyes
(In my eyes)
(In my eyes)
(In my eyes)

In my eyes (In my eyes) the fright they treat
(In my eyes) I must compete
(In my eyes) I see the doorway to a thousand cure drugs
(In my eyes) The resolution (In my eyes) of all the fruitless searches

Oh, I see the fright that they treat
(In me eyes) Oh, (In my eyes) I wanna to see this complete
(In my eyes) I wanna to beat the fright, the beast I see in my eyes (In my eyes)

(In my eyes) (In my eyes) (In my eyes)
(In my eyes)
(In my eyes)
(In my eyes)

Hysteria

Do you ever feel utterly powerless? Like so many others at The Hotel Melanoma, I want so badly to do something to kick melanoma to the curb so that others never have to follow in my footsteps. But I’m not a brilliant oncologist or research scientist, or a rich guy with a foundation. I’m just one lucky survivor with a story and a blog. And I get just a bit manically crazy at times about wanting, somehow and someway, to do more to send melanoma on the highway to hell. This has been one of those weeks. Individually, my reach exceeds my grasp. And it probably always will. But I know I’m so not alone in this manic and evangelistic quest to beat the beast; collectively, we’ll get it done.

For all of you melangelicals who are joining in the fight, here’s The Hotel Melanoma rendition of Def Leppard’s “Hysteria”…



Out of touch
Out of reach, yeah
We should try to get close to defeat
I'm in ‘love’
I'm in deep, yeah
Hypnotized
I'm shakin' to my knees

You gotta know tonight
You’re not alone in fight
Can't stop this feeling
Can't stop this fire

I get hysterical
Hysteria
Oh, can you feel it (Oh can you feel it)
Do you believe it (Do you believe it)
It's such a magical mysteria
When you get that feelin' (When you get that feelin')
Better start believin (Better start believin')
Cause it's a miracle
Say you will, ooh babe
Hysteria when we’re near

Out of we
‘Skin C’s’ through, yeah
We could hide
It's ‘just’ a sunray beast
Oh, I believe I'm with you, yeah
Hopin’ high, that's right
Dream me off my feet
Oh, believe in we

You gotta know tonight
You’re not alone in fight
Can't stop this feelin'
Can't stop this fire
Oh

I get hysterical
Hysteria
Oh, can you feel it (Oh can you feel it)
Do you believe it (Do you believe it)
It's such a magical mysteria
When you get that feelin' (When you get that feelin') Better start believin (Better start believin')
Cause it's a miracle
Say you will
Ooh babe
Hysteria when we're near

Come on

You gotta know tonight
You’re not alone in fight
Can't stop this feelin'
Can't stop this fire

I get hysterical
Hysteria
Oh can you feel it (Oh can you feel it)
Do you believe it (Do you believe it)
It's such a magical mysteria
When you get that feelin',(When you get that feelin')
Better start believin,(Better start believin')
Cause it's a miracle, oh say you will,
Oh babe (Oh can you feel it)
Oh babe (Do you believe it)
Oh (I get hysterical)
Hysterical (Hysteria)
Hysteria (When you get that feelin')
You better believe it (Better start believin')
'Cause it's a miracle
Say you will
Oh baby
Say you will

(Get close to defeat)
Get closer,
Baby
Closer (closer)
Closer (get closer)
Close to defeat

The Handicap Blues

Which is higher these days, my official USGA handicap index or the SPF factor of the sunscreen and golf duds I wear while hacking my way around a challenging mountain golf course that is too tough for my geezer game? I ain’t sayin’. But the way things have been going out there I just might start playing off the ladies tees at some wide open municipal course. Oy.

To the tune of Jackson Browne’s “These Days”…



Well I've been out golfin'
I don't do that much bloggin' these days
These days
These days I seem to think a lot
About the swings that I forgot to do...more true
And all the times I had the chance to

And I am a duffer
And it's so hard to whiff another these days
These days
Now if I seem to be afraid ... to hit the slice that I have played so long
Well it's just that I've been losin' ... fore! It’s gone!

Well I'll keep on movin' ... movin' on
Things are bound to be improvin' these days
One of these days
These days I'll hit on shorter holes
Can’t count the times I’m scorin’ strokes to ten ... my friends
Don't confront me with my failures
I had not forgotten them

Burnin' U.S.A.

Just a little lyrical nonsense dedicated to all of the clueless people who think melanoma is “just skin cancer” and are still seeking that ‘healthy’ tan this summer, to the tune of The Beach Boys “Surfin’ U.S.A.”…



If everybody had a notion
Across the U. S. A.
Then just nobody'd be burnin'
Yikes, melano-i-a
You'd see 'em wearing their burkas
A lot of sunscreen too
A blotchy blotchy blonde scares you
Burnin' U. S. A.

You catch 'em burnin' at Del Mar
Ventura County line
Santa Cruz and Trestle
Australia's Narrabeen
All over Manhattan
And down Doheny Way

Everybody's gone burnin'
Burnin' U.S.A.

You’ll be ‘planning’ that route
You’re gonna take real soon
You're tracking down your derm course
C can't wait for you
You’ll call Intron such a bummer
You’re on dermfari today
Tell the preacher you’re burnin'
Burnin' U. S. A.

Tanner sprees and palm trees
Pacific Palisades
San Onofre and Sunset
Redondo Beach L. A.
All over La Jolla
At Wa'imea Bay.

Everybody's gone burnin'
Burnin' U.S. A.

Everybody's gone burnin'
Burnin' U.S. A.

Everybody's gone burnin'
Burnin' U.S. A.

It's Been Such a Long Time

Thanks to a recent blog post from my Melanoma Diva friend Chelsea, I learned about Is My Cancer Different, a website well worth a visit. It’s “an online movement created to educate individuals about the personalized treatments available for a range of cancers whose manifestations vary widely from person to person. In recent years technology and research have vastly improved pathways to more efficient/successful treatments, but information concerning the benefits of molecular-level diagnostics and personalized care has been slow to make its way to patients.”

Is my cancer different? My two-part answer is “maybe” and “yes”.

The “maybe” part stems from checking into The Hotel Melanoma in 2003, with a Stage IIIc diagnosis and fourteen malignant lymph nodes. Back then, not a one of my merry band of melanoma specialist oncologists ordered DNA-testing of my melanoma cells to determine if they showed some specific DNA mutation that today might lead to a targeted therapy, because such testing simply wasn’t available at the time. So I underwent a very non-personalized series of treatments called “biochemotherapy”, a toxic brew of both chemotherapy and immunotherapy drugs. And, luckily, it seems to have worked, although none of the docs can tell me why it worked for me but not all of their other patients. Is there something different about the DNA of my melanoma, or my immune system, that led to a better-than-average treatment response? Nobody knows. But if you're a newly-diagnosed melanoma patient, please see a melanoma specialist and ask about having your tumor tested for DNA mutations that might make you a prime candidate for one of the new targeted treatments.

The “yes” part derives from what seems to be a unique characteristic of melanoma. Until the day comes when there is some blessed new treatment breakthrough, once diagnosed you will never, ever be declared “cured” no matter how long you’ve presented “no evidence of disease” and you will always be on your oncologist’s or dermatologist’s watch list for a recurrence. That’s why I call life as a melanoma survivor “living at The Hotel Melanoma”—because you can check out any time you like, but you can never leave.

So please, please stay out of those tanning bed coffins and wear some freakin’ sunscreen outdoors, so you too don’t check into The Hotel Melanoma.

In my tenth year at The Hotel Melanoma with no prospects of escape, I’ll leave you with an ode to melanoma to the tune of Boston’s “Foreplay/Long Time”…



It's been such a long time
I think I should be goin', yeah
And time doesn't wait for me, it keeps on rollin'
Sail on, on a distant highway
I've got to keep on chasin' a dream
I've oughta be on my way
Wish there was something I could take.

Well I'm makin' my time, I'm just groovin' along
You'll forget about me after I've been gone
And I baked and I fried, I don't want no more
You’re just outside of my front door.

It's been such a long time. It's been such a long time.

Well I get so ‘lonely’ when I am without you
But in my mind, deep in my mind,
I can't forget about you
‘Good’ times, docs’ faces that remind me
I'm tryin' to forget your name and leave it all behind me
You're comin' back to find me.

Well I'm makin' my time, I'm just groovin' along
You'll forget about me after I've been gone
And I baked and I fried, I don't want no more
You’re just outside of my front door.

It's been such a long time. It's been such a long time.

Yeah. It's been such a long time, I think I should be goin', yeah
And time doesn't wait for me, it keeps on rollin'
There's a long road, I've gotta stay in time with
I've got to keep on chasin' that dream, though I may never find it
I'm always just behind it.

Well I'm makin' my time, I'm just groovin' along Makin' my time, just groovin' along Makin' my time, yeah I'm makin' my time...

Sun SafeTee Rock

I’d be quite embarrassed to publish my official USGA handicap index on the ‘net, although it served me and my teammates well last week during a couple of best-ball competitions that included a net double eagle, which just ain’t right. So suffice it to say that on most of my days out on the links at 7000-plus feet in elevation, just about all I do well is to protect my hide from the high UV index we experience in Colorado by wearing both SPF-50 golf duds and some sunscreen on what little flesh I expose out there. And my sunglasses are so darkly-tinted that I have to remove them to find my sliced tee shots in the woods.

As a Stage 3c melanoma survivor who got his tail kicked by radical chemotherapy, I’m often distressed that not many of the other players I see out on the links take similar precautions. And I’m also disappointed that too few of the PGA and LPGA tour players I see on high-definition TV appear to be good sun safety role models. So I was pleased to recently learn about the Sun SafeTee Program, a nonprofit organization that teaches sun protection and skin cancer prevention specifically to the golf community and to junior golfers in particular. Please check it out at Sun SafeTee Program. If I’d started practicing ‘safe sun’ much earlier in life, perhaps I wouldn’t look today like a scarred and worn-out old leather golf grip?

To the tune of “Rockin’ Down The Highway” from The Doobie Brothers…



Got those slice day blues, can't you hear my bogeys comin'
Slicin' down the hole with my good balls no more
All the players brown they can fear C comin’
Mel’s just got to stop, C won't do no more
And I smell my moles ‘r burnin'
Underneath the hood is smoke
Can't stop, and I can't stop
Got to keep on usin' or I'll lose my hide

Oh, blockin' out the fry rays
Oh, blockin' out the fry rays
Oh, blockin' out the fry rays
Oh, blockin' out the fry rays

The high-paid ‘Doc Mole’ got his eyes on me
I know what he's thinkin' and it ain't good
It’s movin' so fast he can barely see C
Gonna lose that tan, I know I should
I gotta hitch in my puttin’
Make my roll move a little bit faster
Can't stop, and I can't stop
Got to keep on usin' or I'll lose my hide

Oh, blockin' out the fry rays
Oh, blockin' out the fry rays
Oh, blockin' out the fry rays
Oh, blockin’ out the fry rays

Melavangelism

I’ve never much liked using the word “awareness” to describe what so many of we melahomies are trying to achieve by talking about melanoma, the Rodney Dangerfield of cancers. “Awareness” doesn’t equate to knowledge or understanding, and I’m not convinced that we accomplish much by making more people ”aware” of melanoma if we don’t also teach them that it’s not “just skin cancer”. Thousands of things, some of them quite tacky and mercenary, have been done in the name of raising breast cancer awareness, to the degree that it’s now impossible for any sentient adult with a pulse not to be “aware” of breast cancer. But what do we really know and understand about that beastly killer until someone near and dear to us “gets it”?

In any event, I’ve decided that “melanoma evangelism” , or melavangelism for short, better describes what I’m trying to do with my inconspicuous little blog-- so please call me a melangelist or melangelical, not an awareness advocate. In the unlikely event that someone who hasn’t already checked into The Hotel Melanoma should stumble upon and read some of my posts, I hope they may “get it” before they get it. My reach may exceed my grasp, but what the heck. Even a hacker occasionally makes a birdie.

To the tune of James Taylor’s “Mexico”…



Way down here you need no reason to groove
Feel a fool sunning, your pale hide’s fame
Lose your moles, leave your hide behind, Ray C games

Oh, Melaroad
It sounds so ‘simple’, you just got to know
The sun's made spots, I forgot to check moles
Guess I'll have to glow now

"Americano" bought the creepy fry
‘Cuz his body's still baking, yikes a hide pyre
Weepy "Senorita" with a hide on fire

Oh, Melaroad
It sounds so ‘neat’ ‘til the sun’s sinking moles
Scan's so bright like to light up the night
Make everything all fright

Ray C’s hungry and the money's all gone
The docs at Sloan don't want to talk on the phone
C gets a lot better, spreads back a whole yard; times are hard

Oh, down on melaroad
You never really been so you don't really know
Oh, melaroad
I guess you’ll have to go

Oh, melaroad
You never really been but you’d sure hate to go
Oh, melaroad
I guess you’ll have to glow now
Talkin' 'bout it melaroad
With a oncy-doc down on melaroad
Oh, melaroad

A Reunion

Until I came out of my closet and joined the online melanoma community, I wouldn’t have thought it was possible to have a reunion with people I’d never before met in person. But it surely is.

I attended my second ever melanoma fundraising event yesterday, and had a marvelous time talking with several melahomies whom I’d previously ‘met’ by e-mail and social media. This particular event was centered around a polo tournament held on a lovely day in a beautiful setting but, truth be told, I’d have enjoyed it just as much had we met at the hotdog stand at the local Costco. Because the day was all about enjoying the fellowship of good folks with shared experiences in fighting a common foe.

It was a particular pleasure to connect with a fellow biochemotherapy veteran, and his loving and supportive wife with whom I’d chatted by e-mail a few years ago when they were about to embark together on that toxic treatment roller coaster ride. But I’m filled with sadness today because the treatment didn’t work as well for this young father as it has for me, and I just don’t understand the “why” of these things. And I don’t think I ever will.

Sending my prayers for this young couple and their two children, I’ll sign off with my version of Bob Seger’s “Even Now”…



Mela highway
A lonesome stretch of days
It runs beneath us
And makes me scarred array
Out in the distance
Always within reach
There’s a crossroad
Where all sun’s victims meet
I close my eyes
And see cure’s face
It's all I want to see
And deep inside
It still amazes me

Even now
It's all that I want
It's all that we need
Even now
C’s gettin’ it all
C's gettin' to me
Even now
When everything's right
When everything's wrong
Even now
C’s keepin' me straight
C's keepin' me strong
C gets to me
Somehow
Even now

And through the darkness
Through all the endless days
Through all the changes
The pointless clinic days
I can still make it
I can still stand tall
Cause I got my cure
To get me through it all
Through all the doubt
And all the fear
And all that I can't say
Still sorrowed
Please help me find my way

Even now
C's still in my heart
C's still in my soul
Even now
C's still on my mind
Wherever I go
Even now
Through all of my days
And all of my nights
Even now
C’s keepin' it real
C's keepin' it fright
C gets to me
Somehow
Even now
Cure’s all that I want
Cure’s all that we need
Even now

C’s gettin’ it all
C’s gettin’ to me
When everything's right
When everything's wrong
C's keepin' it real
C's keepin' me strong
Even now

Mallets For Melanoma

Please come join us this Saturday, August 10, for Colorado Melanoma Foundation’s inaugural event and a day of fun and safe sun!

Until then, I’ll leave you with the Hotel Melanoma rendition of “Come Sail Away” from Styx, which I promise not to sing on Saturday…



I'm paling away,
Set an open course for the white-skinned me,
'Cause I've got to be free,
Free to face the life that's ahead of me,
On board, I'm the captain, so climb aboard,
We'll search for new breakthroughs on every shore,
And I'll try, Oh Lord I'll try, to carry on

I look to ‘skin C’,
Reflections on past days spark my memory,
Some happy, some sad,
I think of childhood friends and UV’s we had,
We lived happily forever, so the story goes,
But somehow we missed out on the normal moles
But we'll try best that we can to carry on

A gathering of onc docs appeared above my bed,
They sang to me this song of hope and this is what they said,
They said come pale away, come pale away, come pale away with me lad,
Come pale away, come pale away, come pale away with me lad,
Come pale away, come pale away, come pale away with me,
Come pale away, come pale away, come pale away with me babe,
Come pale away, come pale away, come pale away with me

I thought that they were crazy, but much to my surprise,
I climbed aboard for pharm drips, I headed for drug trials
Come pale away, come pale away, come pale away with me lad
Come pale away, come pale away, come pale away with me
Come pale away, come pale away, come pale away with me
Come pale away, come pale away, come pale away with me
Come pale away, come pale away, come pale away with me...

Mole Mapping Rock

Earlier this summer I experienced my first adulthood visit to a dermatologist, at the University of Colorado Hospital’s Dermatology Clinic. One of the ‘highlights’ of the day was a session in the clinic’s “mole mapping” room, wherein a nice nurse took magnified, high definition photographs of several “suspicious” moles. After living at The Hotel Melanoma for a decade, I thought I’d pretty much lost any sense of modesty around licensed health care professionals. But apparently I haven’t, and found mole mapping to be a tad bit embarrassing.

The nurse appeared to be of my vintage and I hope this made the process of mapping my unprepossessing old carcass slightly less painful for her. Nevertheless, she has my deepest sympathies and sincere wishes that my next appointment occurs on a day when she’s off work. Nobody should have to do this twice.

For all of my suspicious moles, here’s The Hotel Melanoma rendition of Def Leppard’s “Photograph”…



I'm outa luck, outa sun
Gotta photograph, picture of
Tanning killer, you're too much
You're not only one I wanna pluck
I see your face every time I ‘screen
On every place, every sag of me
So wild and free, so far not C
You're all I ‘want’, my tan disease

Oh, look what you've done to this flock of moles clown
Oh oh, look what you've done
Photograph - I don't want your
Photograph - I don't need your
Photograph - All I've got is a photograph
But it's ‘hot’ enough

I'd be your brother, if you were fair
Put your hurt on me, if you dare
Such a demon, you got guile
You make every man feel like a child, oh
You got some kinda hold on me
You're all wrapped up in mystery
So wild and free, so far not C
You're all I ‘want’, my disease

Oh, look what you've done to this flock of moles clown
Oh oh, look what you've done

Photograph - I don't want your
Photograph - I don't need your
Photograph - All I've got is a photograph
You've gone straight to my head

Oh, look what you've done to this flock of moles clown
Oh Oh, look what you've done
I gotta map you

Photograph - I don't want your
Photograph - I don't need your
Photograph - All I've got is a photograph
I wanna pluck you

Photograph
Photograph - Your photograph
Photograph -
Photograph - I need only your
Photograph - I'm outa sun
Photograph - I'm outa sun
Photograph - You're a deadly one
Photograph - I wanna duck