The "Hotel Melanoma" moniker is a metaphor for living with my particular brand of cancer. Except for those lucky few of us deemed "cured", all we cancer survivors are guests of one of the many, many branded hotels in the "Hotel Carcinoma" chain. We can check out any time we like, but we can never leave. Meanwhile, let's be livin' it up; and please support cancer education, prevention, and treatment research.
Tomorrow is my fifth anniversary of completing stereotactic radiotherapy, and I’ll be celebrating by having a MRI and checkup with Dr. No to confirm that Mr. Schwannoma doesn’t need another nuking. And I’ve vowed to keep my smart mouth shut when I’m once again asked to complete the redundant questionnaire confirming that, no, to the best of my knowledge after reasonable and diligent inquiry, I have no body piercings or other metallic implants on my person. Although I’ve always wondered what would happen if I did but lied about that on that questionnaire.
Until next time, I’ll leave you with The Hotel Melanoma take on The Firm’s “Radioactive”…
Well I'm up for fight Not feelin’ passive Burn it gone with light 'Cause I'm radioactive Radioactive There’ll be a fight And I'm won’t be captive Burn it through with light 'Cause I'm radioactive Radioactive They shot some rays at U I’m wont to stay with U’s Rad D I want to pray at U And I want U to know Got to lay and wait Must be contrastive Burn it gone with light ’Cause I'm radioactive Radioactive Radioactive Radioactive They shot some rays at U I don't want to stay at U I want just to stray from U And I want U to know Got to lay and wait Must be contrastive Burn it gone with light Cause I'm radioactive oh yeah Oh yeah radioactive Don't you stand, stand too close You might catch it Radioactive Radioactive
Several of my recent posts have been awfully serious. So, I’ve declared it “Animal House Day” at The Hotel Melanoma. It’s time to do your best impersonation of John Belushi’s movie character, John “Bluto” Blutarsky, and sing along with this ever-so-slightly altered version of The Kingsmen’s “Louie Louie”…
UV do fry, oh no C gotta go Aye-yi-yi-yi, I said UV do fry, oh Black C C gotta go Fine little cure waits for me Catch a drip across IV Black’s New Pink, I shout, all alone Never know if my Black C’s grown UV do fry, oh no C gotta go Aye-yi-yi-yi, I said UV do fry, oh Black C C gotta go These nights and days I’m pale for C Think of cure, constantly I’m so hip, I ‘screen sun’s glare I check those moles in my hair. UV do fry, oh no C gotta go Aye-yi-yi-yi, I said UV do fry, oh Black C C gotta go Okay, let's give it to 'em, right now! See C breakin’, it’s Moon Shot love It won't be long, C see new drugs Take cure in my arms again With cure we'll never grieve again UV do fry, oh no C gotta go Aye-yi-yi-yi, I said UV do fry, oh Black C C gotta go Let's take it on outa here now Let's go!!
When I received a Stage IIIc diagnosis in 2003, my post-surgical treatment options were few. I could roll the dice and “wait and see”. Or I could choose treatment with Interferon, approved by the FDA in 1995, which my doc said would only marginally improve my odds of avoiding a recurrence. Door Number Three was biochemotherapy treatment, which my doc seemed to believe was showing better results than Interferon, although it hadn’t been done long enough for him to quote any reliable statistics for me to mull over. During the mercifully brief time the docs thought I was quite likely at Stage IV, the only treatment option seemed to be biochemotherapy to delay the inevitable for a few months. And it wasn’t all that long ago when my doc told me that melanoma was one of the forgotten stepchildren at The Hotel Carcinoma.
But, oh my, how things have changed. Over the past year or so we’ve seen FDA- approval of two new Stage IV treatment drugs, Yervoy and Zelboraf, and others like anti-PD-1 are in the trial pipeline. Yervoy and Zelboraf trials for Stage III patients are also underway. And just last week, MD Anderson Cancer Center announced the launch of its Melanoma Moon Shot Program, aimed at dramatically reducing both the incidence and mortality of melanoma.
We seem to have arrived at a crossroads, a turning point where the road that lies ahead is paved with the promise of more and better treatment options for advanced melanoma patients. And it’s about time. Now if we could just get the feds to issue the equivalent of a fatwah against the indoor tanning industry and quacks like ‘Dr.’ Mercola. And live to see a black flash mob shutting down the streets of a major city for a race for a melanoma cure.
The Hotel Melanoma twist on The Allman Brothers Band’s “Melissa”…
Crossroads ... seem to come too slow ... yeah The kids they fry from coast to coast Sowing skin C, sunning done Bearing sorrow, baking sun But black-prone we'll always run ... for sweet remission Great pain ... each scar hooks a name ... none the same And no one knows “just skin C’s” game Young ones hear the UV lies There are those tan beds where C lies Lord in our deepest dreams “just skin C” cries ... for sweet remission It seems our morning's come It seems C’s on the run Sunscreen shinin' through the air Better not to have a care So pick up your gear and skin C roll on ... roll on Crossroads ... will we ever see it go? Yo... yo...yo...When will we hide the dead tan's ghost? Lord, when will C lie ... beneath the plain? When will this devil go away? But I know that C won't stay ... we’ll flout remission Yes I know that C won't stay ... we’ll flout remission
I’m kinda thrilled and grateful that MD Anderson Cancer Center has selected “just skin cancer” as one of the targeted cancers in its Moon Shots Program. We’ve arrived. The biggest cancer center in the country is showing us a whole lotta love. What’s next, black ribbons on bottled water?
My slightly altered version of Ruby & The Romantics' “Our Day Will Come”…
Our day has come And we'll have everything. We'll share the joy Finding new drugs can bring. No one can tell me That I'm too dumb to know (dumb to know) That funds will grow (funds will grow) When you fund me. Our day has come And we can't wait for trials. No tears for us - Think cure and wear a smile. Our dreams have magic Because we'll always stray From harmful rays Our day has come. (Our day has come; our day has come.) Our dreams have magic Because we'll always stay With sunscreen way. Our day has come.
Our day has come.
MD Anderson Cancer Center has announced that it’s launching a Moon Shots Program, “an unprecedented effort to dramatically accelerate the pace of converting scientific discoveries into clinical advances that reduce cancer deaths”. And little ol’ “just skin cancer” melanoma is one of eight cancers at which the program will take a moon shot. That is just way cool. On more than one occasion I’ve been referred to as a space cadet, so give me a ticket on that moon rocket!
Melanoma, you are going down.
The Hotel Melanoma rendition of Creedence Clearwater Revival’s “Bad Moon Rising”…
I see the Black’s moon a-rising. I see trouble on your way. I see cure breaks like lightnin'. I see Black’s time to pay. Don't hang around to fight, Well, it's bound to take your life, There's a Black moon on the rise. I hear cures for pain a-showing. I know your end is coming soon. I hear new cures ever growing. I hear a choice for Black C’s ruin. Don't hang around to fight, Well, it's bound to take your life, There's a Black moon on the rise. All right! Hope you got your things together. Hope you are quite prepared to die. Looks like you’re in for nasty weather. One eye is taken for an eye. Don't hang around to fight, Well, it's bound to take your life, There's a Black moon on the rise.
Don't hang around to fight, Well, it's bound to take your life, There's a Black moon on the rise.
“On the way-too-early morning of Monday, September 15, 2003, I checked into the university hospital’s critical care oncology unit to begin my first of four rounds of biochemotherapy. After nearly three months of diagnostic work and surgery, I was ready to finally do something, perhaps anything, to start putting up a fight. Put me in coach, I’m ready to play, today.
I really didn’t have a clue what was in store for me over the course of the next five in-patient days. That’s not because the nice folks at the clinic didn’t tell me all about it, because they most certainly did. Call it a healthy state of denial born from desperation. I was so scared of the alternative, i.e. likely and imminent death, that I’d probably have swallowed plutonium if that’d been the recommended treatment regimen.
A couple of hours or so into the initial blast infusion, the sense of bravado was way gone. Had I been physically capable of doing so, I probably would’ve hightailed it out of there never to return. I’ll spare you the details of the brutally toxic side effects of this treatment. Suffice it to say there’s a good reason they only do this on an inpatient basis, which allows constant monitoring and treatment of side effects; otherwise you’d probably die. A fine nurse named Johanna eventually knocked me out with a nice dose of Demerol into the infusion line. Thank you and goodbye. Unfortunately, my wife was still wide-awake and had to watch what has happening; I think the rest of the week was harder on her than me.
The week ended with nurse Johanna deciding I needed to take a walkabout around the unit, to help bring my blood pressure and blood oxygen levels up to a safe enough level for discharge. I recall slowly shuffling down the hall, propped up on either side by my wife and Johanna—both are short and of convenient crutch height—with somebody dragging the IV pump tree stand along. The walkabout worked, and I thank her for that.
I think the hardest thing about chemotherapy is going back for more. I’m still not sure how I talked myself into returning for rounds two, three and four. My best guess is it was some combination of desperation, determination, and the sense I’d be letting everybody down, including myself, if I’d failed to show up.”
I know of several rebel mole mates in the midst of biochemotherapy right now. So with my hopes that you are a more obedient patient than me, my prayers for your successful treatment, and my apologies to nurse Johanna, I’ll leave you with my rendition of Tom Petty & The Heartbreakers’ “Rebels”…
Nurse, please don't walk out I'm too drugged to follow You know I won't be this way tomorrow Well - maybe I'm a little rough around the edges Inside a little hollow I get ‘fused with some things sometimes That are so hard to swallow - Hey! I was prone to rebel Down in C.C. on a Monday morning Yeah - with one foot in the grave And one foot on black devil I was prone to rebel. Well she hooked me up in the morning And she laid out her wish list IV’s streamed in my arm And drew C out on the hit list Well - I never would've dreamed That cure part was so wicked Oh - but I keep coming back 'Cause it's so hard to kick it. Hey, hey, hey I was prone to rebel Down in C.C. on a Monday morning Yeah - with one foot in the grave And one foot on black devil I was prone to rebel. Even before the doctor’s bothered They showed us their mettle Heard our call pleas And kept our BP’s level I can still feel kind eyes Of those blue nursing angels When I'm blogging sounds at night For the defeat of black devil. Hey, hey, hey I was prone to rebel Down in C.C. on a Monday morning Yeah - with one foot in the grave And one foot on black devil I was prone to rebel. Hey, hey, hey I was prone to rebel Down in C.C. on a Monday morning Yeah - with one foot in the grave And one foot on black devil I was prone to rebel.
My golf game has been quite ‘hazardous’ lately and I’m feeling a lot like the guys in this public service announcement from The American Academy of Dermatology. And I just might rename my golden retriever “Three-Putt”. But if I can’t hit the green, at least I do ‘screen. And I hope you do too.
Until next time, I’ll sign off with The Hotel Melanoma rendition of The Beatles’ “Yesterday”…
Yesterday, all my doubles seemed so far away. Now it looks as though they're here to stay. Oh, I still grieve for yesterday. Suddenly, I've got half the tan I used to see, There's a shadow hanging over me, Oh, paler days came suddenly. Why C had to grow I don't know doc couldn't say. Instead something’s wrong, Now I long for yesterday. Yesterday, sun was such a breezy place to play. Now I need a place to hide from rays. Oh, I believe in yesterday. Par 3’s have to go I don't know tee’s up today. Instead hitting long, Now I long for better play. Yesterday, golf was such an easy game to play. Now I’m bleedin’ case of slice today. Oh, I believe in Tanqueray. Mm mm mm mm mm mm mm.
I’ve lived long enough in the big sky country of the Great Plains and Rocky Mountain West that I now feel quite claustrophobic in the skyscraper canyons of a big city. So you might imagine how much I enjoy the close confines of a MRI tube. (The occasion of my first brain MRI led to an accidental Ativan overdose and you can read all about it here) And there’s just no way I’d climb into a tanning bed, even if I was buying the snake oil that ‘Dr.’ Mercola and his ilk are selling. But I’m due for a MRI of Mr. Schwannoma in ten days or so and have learned from having a slew of these scans to do them without benefit of pharmaceutical assistance. And I’ve even come to the point of kinda chilling and grooving to the banging of those magnets.
For all of you who’ve learned to dance to the rhythms of a MRI, The Hotel Melanoma rendition of the Moody Blues’ “The Story In Your Eyes”…
I've been thinking about my fortune And I've decided that I’m really not to blame For the lump that's deep inside me now Is still the same And the sounds we get from leather Is the music to my forty MRI’s It's been shining down upon me now I realize Listen to your hide slowly burning ’Screen all your heartaches away You’re part of the pyre that is burning And without tan beds you can build another day But I'm frightened for the children That the hide that they are tanning will bring pain And fake sunshine they've been baking for Will turn to stain Listen to your hide slowly burning ’Screen all your heartaches away You’re part of the pyre that is burning And without tan beds you can build another day But I'm frightened for the children That the hide that they are tanning will bring pain And fake sunshine they've been baking for Will turn to stain When the final line is over And it's certain that the curtain's gonna fall I can hide inside from sweet sweet sun For ever more
My golf date with the Geezer League got rained out today. (This is a blessing since we badly need the rain and I might as well be chipping and putting with my eyes closed.) So I’ve nothing better to do than be annoying and beg for financial support for melanoma research. Nearly everyone who reads this blog is already an inmate at The Hotel Melanoma, and I know you mole mates are already doing all you can to support the cause. But one never knows how many misdirected Google searchers might get lured here and actually read this post before realizing that it’s not ‘Dr.’ Mercola’s quackery blog. So here goes…
There are several worthy melanoma nonprofits out there, like the Melanoma Research Alliance featured in the recent Stand Up To Cancer fundraising telecast. My personal favorites are selfishly close to home-- the Lewis Melanoma Research Fund, which supports my doc’s research efforts, and the AMC Cancer Fund, which supports the University of Colorado Cancer Center. And I’m participating in the AIM For A Cure Melanoma Walk in Charlotte, NC on November 17th.
If you choose to support one of my favorite melanoma nonprofits I’ll certainly be grateful, but all I can reasonably ask/beg is that you choose your own favorite organization and support it generously. The Indoor Tanning Association seems to be dead set on creating the demand for a new wing here at The Hotel Melanoma for former teen tanners, so we need your help in finding more effective treatments and, maybe someday, a cure. The life you help save just might be your own.
Hey you, not yet in C’s fold Getting UV, baking moles Can you feel C? Hey you, tanning all the while With bitchy tweets and snake oil smiles Can you heal C? Hey you, come help us to bury black fright Won't give in without a fight. Hey you, out there lying prone Getting basted like a scone Would you touch C? Hey you, in salons out at the mall Waiting for some sun to come out Would you touch C? Hey you, would you help me to carry C’s stone? Open your heart, it’s coming home. And it’s not only fantasy. The wall’s not too high, As you will see. With fatter wallets plied, We could stop Black C. With new cures end cancer’s old reign. Hey you, out there on C road Always buying what Oz sold, Can you help me? Hey you, out there beyond these walls, Getting mottled at the mall, Can you help me? Hey you, don't tell me there's no hope at all Together we stand, divided we fall.
It’s time for me to schedule a MRI scan of Mr. Schwannoma and a follow-up appointment with my favorite nuke doc, so I was shuffling through my deck of University of Colorado Cancer Center M.D. cards to find his appointment line number. It’s a fairly full deck, at least compared to the deck my spouse would claim my chemo-depleted brain is playing with. At age 9 I collected baseball cards and now at age 59 I collect oncology cards. Life has a way of circling around on you. Does anyone want to trade a Mickey Mantle rookie card for my radiation oncologist’s card, even up?
And the same old, same old CIGNA claims department drill now begins. Dr. No’s office will get my MRI preauthorized. And when the hospital submits the bill, CIGNA will deny payment, claiming the scan is medically unnecessary. Or that Mr. Schwannoma is an uncovered preexisting condition. Or both. And I’ll eventually win the argument.
But, hey, life is good and I retain high hopes that one day we’ll all celebrate the demolition of The Hotel Melanoma and dance as its walls come rumbling down. Meanwhile, I’ll sign off with my rendition of John Mellencamp’s “Crumblin’ Down”…
Some tumors ain't no damn good You can't trust 'em you can't bust 'em No good read goes unpunished And I don't mind bein' their whippin' boy I've had that pleasure for years and years Yo, Yo I ever was a tanner--tell me what ‘screen can I use Second guessed is what you get when insurers bend the rules And time respects no patient--what you claim up they’ll stall I’m waiting on hold to make my pay beggin’ calls Saw my pictures at the doctor’s Read the news around doc’s face And now some people just want to beat me on claim When the walls come tumblin' down When the walls come crumblin' rumblin' When the walls come tumblin' tumblin' down Some people say I'm a blogger that’s crazy I'm law-educated--my opinion costs somethin’! But I know I'm a real bad dancer Don't need to look over my shoulder to see what I'm after Every body's got its problems--ain't no new news here I'm in same old trouble I’ve been havin' for years Don't confuse mole problem with scar tissue, cured? It's recurrence fear Just a human desire to have my scans clear Wanna put my arms around you Hear your songs in my ear C can bend me C can’t break me So I’d better scan clear When the walls come tumblin' down When the walls come crumblin' rumblin' When these walls come tumblin' tumblin' down When the walls come tumblin' down When the walls come crumblin' rumblin' When the walls come tumblin' tumblin' down Wanna put my arms around you Hear your songs in my ear C can bend me C can’t break me So I’d better scan clear When the walls come tumblin' down When the walls come crumblin' rumblin' When the walls come tumblin' tumblin' down
This weekend a pink horde will descend upon Garden of The Gods Park in Colorado Springs for the “Guess Who” Race For The Cure. (A Pinktober race at this elevation would be at risk of being snowed out, so the pink frenzy season starts early in these parts.) The event will benefit from an abundance of promotional local media coverage and corporate sponsorship. And that’s all simply wonderful. And I’m just more than a little envious, in the sense that I’d love to see a fraction of that success replicated for the benefit of my mole mates.
Someday, somehow, the Black Cancer Posse will get there, at least at a level commensurate with our numbers. Please take a first little step in that direction by either joining us at the AIM For A Cure Melanoma Walk in Charlotte, North Carolina on November 17 or sponsoring a participant. This, my friends, will be a beautiful day. And maybe on another beautiful day in the not-too-distant future I’ll join a black horde descending upon Garden of The Gods Park.
The Hotel Melanoma rendition of U2’s “Beautiful Day”…
The heart is in gloom, cries out blue lonely sounds ’Cuz there's no boom, no race to ‘tend in this town You’re out of luck with the passion that you’d like to share The Black C lacks bucks and you're not runnin’ anywhere You’d love to find mole friends to join you out on a race Someone that would ‘friend’ your brand so it earns its place It's a beautiful day, The sky’s fall and you feel like It's a beautiful day, Don’t let it get away You’re on C’s road but you’ve got no destination You’re in the mud, in the maze of cure imagination You loved your brown even if that’s deadly skin hue U’s been all over, now you’ve been all over U It's a beautiful day, Don't let it get away It's a beautiful day, Join me, Black C’s due one mother race Show some love, I know it’s not a hopeless case See Black World with ‘screen for you See skin checks right in front of you See the tan ones joining our crowd See the ‘noma cheats cheering our plea out See the partyin’ fires at night See the park fields at first light See the horde with a smile on our mouth After pink flood fall’s black colours came out Will be a beautiful day Don't let it get away A beautiful day Join me, Black C’s due one mother race Beat C, I know it’s not a hopeless case Tan you don’t have, you don’t need it now When you don’t glow you can feel it somehow Tan you don’t have, you don’t need it now Don’t need it now Will be a beautiful day
During my college days I worked as a surgical orderly in a big hospital. It was an unskilled “fetch and carry” sort of job where not much was expected of me other than providing the muscle to move an anesthetized patient from Point A to Point B and to hustle when a surgeon needed something like getting a tissue sample to the pathology lab for a quick read while the patient was on the table. But I witnessed the histrionic behavior of the small minority of surgeons who act like prima donnas and abuse the surgical staff. A few years later I was a baby lawyer working in a firm that did medical malpractice defense work and played minor roles in defending a few malpractice lawsuits against surgeons. (My favorite defendant was an osteopath who removed a perfectly healthy appendix to treat his patient’s recurring headaches and seriously botched the unnecessary operation to boot.) Later on in my legal career, working as a banking lawyer, my only dealings with surgeons occurred when I was trying to help clean up the mess they’d made with some boneheaded tax shelter investment that put them in financial trouble despite the fact they earned high six-figure incomes.
So I must confess that I checked into The Hotel Melanoma not having the highest opinion of surgeons. Thankfully, however, I’ve been the beneficiary of the skills of a couple of very fine, kind and gentlemanly surgeons and my opinion of this medical specialty has vastly improved. With gratitude to both of them, here’s my version of James Taylor’s “Handy Man”…
Hey mates, won’t you gather round Look at what I'm cutting down Yeah maties, I'm your handy man I'm not the kind to use a pencil or rule I'm handy in the gloves and I'm so cool Fixin’ broken parts, I know that I truly can If your broken parts should need repair Oh mole mates, I’m The Man to see I fix your C things, you tell all your friends They'll come runnin' to me Here is the main thing I want to say I'm busy 24 hours a day Fixin’ broken parts, I know that I truly can Come-uh come-uh come-uh come come Yeah, yeah, yeah Come-uh come-uh come-uh come come You’ll come runnin’ to me Here is the main thing I want to say I'm busy 24 hours a day Fixin’ broken parts, I’m your handy man Come-uh come-uh come-uh come come Yeah, yeah, yeah Come-uh come-uh come-uh come come Yeah, yeah, yeah
For some, September marks the beginning of various and sundry hunting seasons. For me, it marks the beginning of open season on me as a patient.
I’ve already knocked off a visit to my primary care doc, who refuses to renew prescriptions for blood pressure and cholesterol meds unless I see him annually for a checkup and lab work. Granted I’m 59 and already a one-time loser of the carcinoma sweepstakes, but this fellow takes way too much interest in my prostate health.
This month I’ll see my favorite radiation oncologist (f/k/a Dr. No) and have a MRI to see how Mr. Schwannoma is doing after being nuked several years ago. I find MRI’s only slightly more pleasant than watching the endless barrage of negative and misleading political ads (from both parties and all super-PACs) on television.
In October, it’ll be time for a six-month checkup with my favorite melanoma doc (f/k/a Dr. Death), when we’ll spin the diagnostic Wheel of Fortune to determine whether any scans or other tests will be performed.
I’ll cap off my season of poking and prodding in November, with a retina scan and visit to the ophthalmologist who will once again tell me he doesn’t know what the cause of my leaky blood vessel problem is and that there’s no cure for it. So why am I here? I suspect only because I’m just about the only patient at the eye institute who isn’t on Medicare and they receive a much higher reimbursement rate for seeing me.
I’m tempted to just blow it all off and stay safe at home, so I’ll sign off with my take on The Clash’s “Should I Stay Or Should I Go”…
Wooh! Oh yeeeeeaaaaah! Doctor you got to let me know Should I pray because I glow? If you say that I’m not fine I’ll be here ’til the end of time So you got to let me know Should I pray because I glow? It’s always tease, tease, tease You’re happy when I’m paying fees One day it’s fine, and next it’s back So if you want me coming back Well come on and let me know Should I pray because I glow? Should I pray because I glow now? Should I stay or should I go now? If I go there could be trouble An’ when I pay it will be double So come on and let me know! This kind physician’s bugging me (his indecision me protestuh!) If you can’t cure me, set me free I have some questions, answer me Exactly how’m I supposed to see? (time for scannin’ and pokes) Don’t you know which gown even fits me? (why do I have to wear this blue dress?) Come on and let me know (my time’s important too!) Did I fool it or did it grow? (Schwannoma is still stable?) Sit! (tell me NED, no mo’ suffer) Should I pray because I glow now? (tell me NED, no mo’ ‘fusin) Should I pray because I glow now? (tell me NED, no mo’ chemo) If I glow there will be trouble (CIGNA say preexisting condition) And if they pay you’ll dose me double (give me chemo on double) So you gotta let me know (pardon me but waitin’ causes fear) Did I fool it or did it grow? (tell me NED, no mo’ nukin’) Should I pray because I glow now? (tell me NED, no mo’ ‘fusin’) If I glow there will be trouble (CIGNA say preexisting condition) And if they pay you’ll dose me double (give me protons on double) So you gotta let me know (pardon me but waitin’ causes fear) Should I pray because I glow?
My blog reflects an ongoing quest to find the good stuff and the funny stuff I've stumbled into during my stay at The Hotel Melanoma since receiving a Stage IIIc diagnosis in 2003. And to raise awareness about this relatively unknown brand of cancer. If you find it of value in your own quest, please share it with others and make a donation to your favorite melanoma nonprofit organization to fund melanoma education, prevention and treatment research. If you're wondering why my golden retriever, Jordan, is pictured here, well, he actually writes most of my posts and he's a lot better looking than me.
