Thursday, October 30, 2014

University of Melanoma

Today, the story about the research findings regarding tanning facilities on or near U.S. college campuses, is swirling around social media outlets…as it should! The study revealed some startling facts. The researchers stated this:

"The presence of indoor tanning facilities on and near college campuses may passively reinforce indoor tanning in college students, thereby facilitating behavior that will increase their risk for skin cancer both in the short term and later in life."

When I read that, I became quite curious about the goings on around my town…a university town..and actually one of the universities used in the study, as "researchers investigated the top 125 colleges ranked by U.S. News and World Report."

As many of you know, when my inquisitiveness gets flipped on, some form of action is soon to be taken.  And here's how that went:

1- A visit to an off campus apartment complex designed for students.

~The visit looked like this…me going directly to the gym find a tanning room right off the main workout area…a tanning booth, with "rules" on the side of the door, and no supervision, nothing to sign. Nothing.

2- An "interview" with the property reps about what I found in the gym.

~This exchange consisted of me asking two young women about the "amenities" of the complex, with a focus on how the tanning usage works.  I asked about waivers, information they give tenants, how they oversee this, etc. What I found out was this: you can "only" use the tanning bed once a day, for 15 minutes…that the office controls the ON/OFF of the machine, there is no info given about the risks of tanning, no signing of anything, and that most of the apartment communities around the university have tanning facilities.

When I read the brochure and saw that a "new tanning bed" was listed as a "LIVING" amenity, my first thought was, it should really be called a DYING amenity.

3- A phone call to the university's OneCard (student ID and payment card) office.

~This call revealed the fact that there are no tanning facilities ON campus (YAY!).

4- A Google search for local tanning salons, and phone calls to each to see if they take the OneCard.

~The search mapped out 6 tanning salons within the town.  I called each, asking if they take the student OneCard as payment for tanning.  All said no, BUT they do give student discounts (UGH!).

After all of this inquiring, the question out of my mouth was,"What can be done next?" (Yes, I talk to myself.  Often.) Well, the researchers stated, "Public health efforts are needed to raise university administration and student population awareness of the harms that indoor tanning poses to young adults in order to increase demand for policy-related action."  Yes, there's that…but that will take a lot of time…what about right now?  

On the bottom of the apartment brochure, I noticed what looked like an umbrella corporation, which oversees this community and many others.  Hmmmm.  I look it up...It's called American Campus Community, this huge company.  I know what I can do next…start calling and emailing this company about taking ALL tanning beds out of ALL of their  apartment communities.  Join me! It's a place to start.

Thursday, September 25, 2014

POPPY: One Year Later

A year ago, I introduced you to a new friend I had made, named Poppy.  She suffers from a behavioral addiction, specifically the addiction to tanning, as well as tanorexia (click here to read Poppy's story).  

This morning I accompanied Poppy to her every-six-months full body skin check…….except it was not 6 months from the last appointment; it was one year later.  

Here's how the past year has looked for Poppy, in terms of changes (or lack there of) in her tanning behaviors:

~We meet.  We become friends.  I know she tans.  I share my story with her about my 2 melanomas (foot and arm) and primary acquired melanosis of the left eye.

~She hears me.  She becomes willing to go to a dermatologist….AND to quit the tanning beds.

~She tells her story….looks at her history...Admits to her addiction.

~She has her full-body check, with one biopsy taken, which comes back severely atypical, needing further excision.  It is then the doctor recommends Poppy be seen every 6 months, because of her lengthy tanning bed history and her pathology report.

Poppy made changes.  Some.  She stopped visiting the tanning salons.  She bought sunscreen.  She borrowed my UPF clothing when she traveled to Mexico and Costa Rica.  

Poppy, however, still engages in risky behaviors.  Many.  She sits in the sun whenever possible (see pic below).

Poppy's "office" in full sun, mine in the shade.

She only uses sunscreen in foreign countries, with no reapplication taking place.  She makes a concerted effort to get tan and to stay tan, most of the time claiming she is "not tan".

In March, Poppy received a letter from her dermatology office, reminding her of the fact that she is due for her full-body check (6 months from the first visit).  She ignored it.  She told me, but she did not make the appointment.  As C. Northcote Parkinson said, and feels very pertinent to this situation, "Delay is the deadliest form of denial."

I can ask, remind, educate, pester, etc…but I can not make her make the appointment.  I care about her deeply, and would love nothing more than for her to be spared the hell of melanoma, yet I know that with addiction, there is no forcing recovery.  I do my part, the way I know how, and I wait for Poppy to make her appointment.

Well, yesterday, she made the appointment.  But, guess why!  Poppy had run out of her antibiotic she uses for acne, had tried to refill it, but the dermatologist would not refill it without her coming in to be seen.  So, the fear of zits is what got her to make the call, and get the appointment that we went to this morning.  

The appointment was extremely thorough (as it should be), with the doctor looking at all of Poppy's moles, asking her if she has noticed anything new or changing, and stating more than once, "Because of your tanning history and your severely dysplastic mole, you really need to be seen every 6 months for the next 2 years.  It is very important."  The doctor took pictures of 6 moles she wants to monitor.  Poppy asked some questions.  I asked some questions.    Poppy got her antibiotic prescription refilled.  It was a productive visit, overall.   

Despite Poppy's wrong motives for making the call, she did have her skin-check nonetheless.  
So now what?  The doctor instructed her to come back in 6 months…and I do what I do…continue to educate in hopes of change.

"Awareness is the greatest agent for change."
~Eckhart Tolle

Tuesday, September 9, 2014

A Day In The Life….

The alarm goes off at 6:00 a.m... I pop up, knowing what today is….a day of melanoma life.  I mean, everyday is that, but today I have two melanoma related appointments to jack up the anxiety of living with this diagnosis- 1) My every-9-months check up with my eye tumor specialist (the doctor who performed my Primary Acquired Melanosis surgery) and 2) My full-body skin check with my dermatologist.  

On a day like this, my brain and body go like this…

Jump out of bed.  Stomach hurts. I tell myself to just focus on what it is I am doing in THIS moment…brushing teeth…I am brushing my teeth.  Brushing.  Brushing.  Still brushing.  That works for a fraction of a second, and then I soon notice my mind has been hijacked by the what-ifs (my anxiety default mode).

What if today is like 2 years ago, when I heard the words, "We need to biopsy your eye and freeze the cells around the area."?
What if the words I hear today are worse than 2 years ago?  
What if I just don't go to the appointment, and pretend I don't have to do any of this?

The what-ifs LOVE to take up residence in my brain, getting the storm of insanity swirling strong.  Most of the time, the only way out of this for me, is to do something action oriented.  Action.  Oh I know, I need to circle my suspicious moles.  That's action!  I circle the ones that have caught my attention for one reason or another- very dark in color, a weird shape, new, etc.  Eight.  There are 8 moles I don't like…  I get dressed (another action!).  I say out loud, "God, be with me…whatever that means." And I go.

circled moles

Blast the music. Sing.  Sing loud!  Make my voice louder than the thoughts in my head.  It's a duel of sorts…. combat between my voice noise and my brain noise.  Unfortunately, the brain usually wins single handedly.  Self pity begins to ensue….until I am stopped at a red light right off the highway, and a man approaches with a big sign that states: "I am a homeless vet with cancer."  BAM!  Rocketed into gratitude…a much better place to be.  

I start to make a mental gratitude list…
I am grateful for the doctors I get to see today, who are experts in this disease.
I am grateful for ….
This goes on…and changes everything.  

This shift in perspective served me well during my time at the eye center….the poking, the stinging eye drops, the pulling of upper eye lashed to flip my eye lids, the pictures, the waiting, the shuffling from one room to another, and from one person to another, and hearing the words, "but because of your history…..we will examine it.." (in response to me mentioning I have 3 new, tiny, dark speckles on the white of my right eye- "They are nerve loops").  I have no doubt gratitude helped me through this 3+ hour appointment.

my left eyeball

I finally get called to see my doctor, the expert, after picking large amounts of purply sparkle nail polish off my nails, trying to focus on writing, taking some deep breaths, just wanting to hear what my doctor has to say.  Patience is not my strong suit when it comes to disease.

my picked nails

And he says this: "Everything looks good.  I want to see you back in 9 months.  Be well." …with his gentle, yet reassuring voice.  I smile.  He smiles.  And we say goodbye.

Exhaling is possible, as I drive out of the parking lot…brimming with gratitude….until the fear sets in about the next appointment…which is in 3 hours.

Walking into the dermatology center, I noticed my body's response to the synthesizing of the adrenaline crash, following this morning's appointment and the ramping up of adrenaline triggered by the appointment I was about to walk into.  What it felt like was, walking on a boat that is out to sea (unstable would be another way to say it).  Considering I strongly dislike boats and wavy tides, I was not enjoying this feeling.  Feel the weirdness, and keep going...

In walks the doctor...she talks; I talk (lol); we talk.  She does her thing (a full-body skin check, using mole mapping pictures along with questions and the feeling of many lymph nodes), I do mine (showing her all of circled moles…as if she couldn't see the circles of pen all over my body).  She decides to remove one mole….one that I circled, one that is new.  We say goodbye, and I make my next appointment for December (every 3 months).  And now I wait…for pathology results.

punch biopsy 

As I walk out of the office, I notice the what-ifs leaning in, clearing space for their occupancy…
What if it comes back as a melanoma?
What if it's a thick melanoma, worse than the others?
What if I just never come back here, and pretend I have never heard of melanoma (because, in all honesty, I do let that fantasy pop up now and again)?

When I burst through the doors to the outside (as in…GET ME OUT OF MEDICAL FACILITIES PLEASE!), I smell the incoming storm air, look up to the sky, see brilliant clouds, and say….

What if everything is ok?
Because really, in this moment…it is.

Thursday, July 31, 2014

The Call of All Calls: The U.S. Surgeon General Invites Stakeholders to Private Call

Tuesday, July 29, 2014 consisted of events I can only describe as the bestowal of unexpected gifts.  These surprises, ones which prompted goose bumps and produced tears, were given by The U.S. Surgeon General.

Gifts that cause tears and goose bumps?  And delivered via the Surgeon General?


Here's how that went…

Tuesday morning, Dr. Boris D. Lushniak, U.S. Surgeon General, along with Dr. Howard K. Koh, Assistant Secretary of Health, and others, presented The U.S. Surgeon General's Call to Action to Prevent Skin Cancer to the public.  This webcast was chock-full of facts, plans, goals, inspiration, and the like, which can be read in The Executive Summary

 Top: Dr. Howard Koh
Bottom: Dr. Boris Lushniak

I believe the most important part, or word here really, is ACTION. We were presented with personal stories, programs that are successful thus far in the schools (SunWise), the 5 goals set forth (a MUST read!), the fact that this is a multi-sector call to action, a public health issue, and more. After a two year preparation for this Call to Action to Prevent Skin Cancer, "the real difficult part begins," stated Dr. Lushniak…the part that requires the action.

What caused emotion in me during this webcast?  Hearing from all of these dedicated people is what stirred me to tears, and the details of what they proposed is what roused the reaction of goose bumps.  All of this came as such a surprise.  I had no idea that would happen.  I was unaware such thrilling information was coming.  But hearing there is proposed action to be taken, and that this action IS going to happen, was most incredible.

Needless to say, my head was spinning (something that typically happens to me after being overwhelmed with joy…or fear…or sadness…) after this.  I felt a sense of being listened to, being heard, being taken care of, a feeling of invigoration, a spark to act…more.  More action!

Speaking of more action, Tuesday afternoon was the Stakeholder's Call with the U.S. Surgeon General, which happened to be by invite.  When I got my email invitation, I actually thought is was spam of some sort.  Why/how on earth would I get an email from the Surgeon General's office?  I still have no idea how I landed in that pool.  But after finding out it was legit, I became quite eager to participate.

The phone call was similar to the webcast, in terms of delivering the information described in The Call to Action.  It had a more informal feeling to it, maybe because it was all audio, and no viewing of these people dressed up and standing next to the American flag.  But what it really did for me was, confirm that what I had heard earlier in the day, was not a dream!  It was real.  

Here are some of the many pivotal things I heard:

~Dr. Koh (ASH): 
"…specifically, there are troubling trends for melanoma, compared to other cancers."  "We are facing a rising tide of skin cancer."

~Dr. Lushniak (TSG): 
"We need to do something about this."  
"Now is the time to protect yourself."  
"Have that fun, but take care of your skin."  
"We must change social norms about tanning….from how 'healthy' you look, damaged you look."  "This is a year round issue."  
"Be a role model for sun safety."
"You have a stake in this…being part of this incredible call to action."
"The time for action is now."
Talking about the tanning industry- "We have a movement out there that is allowing exposure to a carcinogen."
"Let's take this mission seriously."

~Stacy Escalante (mother, reporter, and stage 3 melanoma survivor):
In reference to melanoma- "No one is immune."
"If only I had gone to the doctor when I first noticed that spot."

Am I getting excited over just words?  Empty talk?  Political fluff?  No, I think not.  I believe that when the United States Surgeon General (a doctor with a dermatology background) presents the country with a call to action, that ACTION will take place!  And as Dr. Lushnik said in closing, while talking about promoting the health and safety of our nation, "Join me in that endeavor when it comes to skin cancer."

You know I will.

Tuesday, July 8, 2014

Preoccupations: Porn VS Protection

I came across a story the other day, that has me thinking about how we (not me…and not most who are reading this), as a nation, seem to focus our attention on such strange things, when there are actually important issues, issues of monumental importance, that need our dedication.

What am I talking about?  Why the word porn in the title of this blog post?  Where is this going?

Ok, here…have a look at this picture:

So, the picture above and to your right was posted on Facebook, flagged as pornographic, taken down, and the mother who took this picture was told if she posted it again, her Facebook account would be shut down.

The mother did not see this as sexual, and neither do I!  However, the mother "thought it would be cute because of the old Coppertone ad and how much her tan line looked like that."

Tan lines?  Kids?  Cute?  HELLO!?!??!?!  Therein lies the issue!  The fact that there are parents out there that don't know about the sun safety, or choose not to practice it.

There is nothing cute about a tan.  Simply put, here are some facts about getting a tan, which are nothing to smile about:

~ Exposure to UV rays during early childhood is most damaging.

~ Just ONE bad sunburn as a child or in adolescence, more than doubles the chance of developing melanoma.

~ A tan is DNA damage (UV rays harm the skin cells' DNA)

~ Sun damage can lead to premature aging, eye damage, and melanoma.

~ There is no such thing as a healthy tan.

If only the amount of energy spent on flagging for "porn" where spent on educating the general public about life saving, sun safety information, it seems the message would get out there…loud and clear.

In the meantime, we continue what we do, educating the best we can, hoping that we get the word out and help to save lives.

Friday, May 9, 2014

Sleuthing In and Around the Tanning Salon

A quick blog post about what I learned today during my sleuthing session at the tanning salon....

On the way to my hair color appointment, I had a thought (well, probably many), about popping into the tanning salon next door to my hair place.  My thought was this: I'm going to waltz in there, and straight up ask them if I can tan there, having had melanoma twice.  I just had to know what the answer to that would be.

Well, that's the thought that got me in the door, and here is what unfolded...

Me: Hi.  Can I tan here if I have had melanoma skin cancer twice?
Young Girl: (22 years old,working there):  Yes.  You just have to sign something first.
Me: OH!
Young Girl: I've never had anyone ask me that before.
Me:  Yeah.  Well, I'm actually not interested in tanning.  I was just curious about the policies in place, and how things work here.

Now that that was out in the open, I could freely ask whatever I wanted...and I did (of course).

Me: So, you have red don't use the tanning beds here, right?  Because redheads have a higher chance of getting melanoma.
Young Girl: I do.  But I use it for my eczema.  It gets so bad and then I'm embarrassed by it, so I use the beds to help that.
Me: But what is worse...being embarrassed by eczema..or possibly dying from melanoma?
Young Girl: I know.  My mom just had a section of her arm taken off because of melanoma.
Me: OH!  You should really consider the fact that you have 2 factors that raise your risk of getting melanoma- being a redhead AND a family history.
Young Girl: I know. Ya know what blows my mind?
Me: What?
Young Girl: That pregnant women come in here and tan!
Me: Yes, I have heard that before.  It's very scary that such things are allowed.  What about age restrictions?  Can you tell me about that?
Young Girl: If you are 14-16 years old, you need a parent's signature, the parent must show ID, AND the parent must stay on the premises while the child tans.
Me: But that doesn't actually happen, RIGHT?!
Young Girl: Oh yes it does.  A lot!
And if you are 17 or 18, you need parent permission, the parent needs to show ID, but that's it.
Me: FUCK! I'm so sad about this.

In walks a young, pale college girl...checking in at the desk where I am standing...
Me: You are so beautiful just as you are.
College Girl: Oh, thank you!
Me: Are you sure you want to do this?  You know the risks?
College Girl: Yes, I am fully aware of the risks.
Me: So, is it kind of like most people know it can kill them, but do it anyway?
College Girl: Exactly!
And off she went, into a little, scary room to lay in a bed that will give off radiation that will damage her forever.

As I thanked the young girl that worked there for her time and the information, I sadly watched a half a dozen women saunter out the door after having been radiated...while others walked in.

I left with a pit in my stomach and some tears...just thinking of how much work there is to be done, to get the truth about tanning beds out into the world!  And also, I cried for those that have lost their lives to the horrible disease of melanoma because of these beds.

This blog is dedicated to Jillian H. & Jaime R.

Monday, April 21, 2014

Serendipity & Such

There are times in my life that feel like a colossal webbing of convergent threads which form a wildly serendipitous occurrence.  These threads vary in their origin.  Whether it be a common interest of something extracurricular, or the diagnosis of a disease...there is always an incredible piece of sparkle that I can find when this happens.  Most remarkable to me, is the fact that intersections seem to occur when no one is looking.  Serendipity and such! 

I have actually been experiencing this quite a bit, as of late.  And I cherish it each and every time.

I often find it hard to describe these connective encounters, but I'm going to attempt to depict a recent happenstance that has really made an imprint upon me....

Here we go:
~A girl contacts me on Facebook, having found me on one of the many melanoma groups I am part of- The Badass Melanoma Warriors.
~The message I get is about trying out for a commercial, one that has ties to cancer.
~I email her pictures (as requested); she calls me.
~And our phone call is where the magic is revealed....kindred minds unveiled!

We get off topic slightly, moving away from the commercial and more toward my melanoma story.  And then, this person on the phone, the one I already feel connected to, tells me that SHE has melanoma.

She tells me of her story.  I am forever changed.  This is why it is so important we tell our stories.  They make a difference, wake people up, shed light on the reality of this disease.

Her story, in brief, goes like this:
~Jaime is 26 when she goes in to see a doctor about a mole on her back that has been there for awhile and is bleeding.
~The biopsy comes back- melanoma. Wide excision, lymph nodes removed.
~Lymph node pathology comes back CLEAN- no cancer.  Jaime is told to get skin checks every 6 months and that no scans are needed.  Good to go.
~5 years later, Jaime has extreme pain in her abdomen, goes to the ER, has a chest X-ray which shows cancer is in multiple places.  She is admitted for further examination (liver biopsy, CT scan, etc).
~Diagnosis: melanoma in her chest, lung, liver, and brain.  Stage 4 melanoma, BRAF positive.
~Treatment thus far: Yervoy/BRAF and Gamma Knife twice.

After hearing her story, not only was I in shock, as I seem to always be when I hear of melanoma stories like this, I know we have been woven together...for some reason.  And I say to her, "I don't care about this commercial thing, the next time I am in LA, we must get together."  And we did....about 2 weeks ago.

Our meeting, for me, was such a clear example of how these paths that cross, often so randomly, yet not, create unexplainable unity.  We talked, laughed, pondered, bonded. As theologian John Fawcett said, in the hymn Blessed Be the Tie That Binds, "We share our mutual woes; our mutual burdens bear; And often for each other flows a sympathizing tear."  I did not want our time together to end.  It felt like we could have talked for days straight, understanding every word each other would utter.  

I cried on the way home from this...feeling immense empathy, love, understanding and admittedly, fear...just thinking about melanoma, how people come together, feel understood, can really relate, etc.  We had all of that at this lunch together...and will have all of that forever.

We both acknowledged that we use humor as a way to cope sometimes, and we both know this is a way of attempting to deal with the barrage of insanity this disease brings with it.  We also know that, like Erma Bombeck said, "There is a thin line that separates laughter and pain."  #truthbomb  

We both love to use the word f*ck, and especially enjoy telling melanoma to f*ck off (as you can see in the pic above).  This is apparent in Jaime's blog posts, as well as mine.  You can follow Jaime's melanoma journey here : The Jaim Abides 
Oh, and you can get these hats here: FxCK CANCER Foundation

And so it is, this horrible disease has woven together, people who had never met a way that we will forever be connected to each other.  I am so grateful for the blessings to be found in the storm.  

I love you Jaime!

"There Will Be a Light" By Ben Harper & The Blind Boys of Alabama