Introduction

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.



Tutu Brothers

Monday, August 19, 2013

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...

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