Tuesday, October 22, 2013

Guest Blog By Heather H.

My journey with melanoma started in June of 2005 with the removal of a mole. The words that would change my life!!! I had to have a skin graph on my hand to get it all. 

Then a day after my 21st bday I had my second surgery of my life. More lymph nodes... The one they tested had been positive. I was dx as stage III I did the high dose interferon for a month then the 11 months of shots at home. I did chest X-rays & blood work until February of 2010 showed a shadow on my right lung. Had a biopsy came back melanoma!!! Now I'm stage IV. I had 2/3 of my right lung removed & went back to the wait'n'see stage.... 

October 2010 I was having terrible migraines & had a CT scan that showed I had two tumors in my brain. I had to have brain surgery then gamma knife on the other. I then had a seizure because the gamma knife didn't work on the second tumor. I lost the use of my right arm & leg for a while. After the surgery I was able to use my arm & leg just fine!! 

By then I was told that the melanoma had spread to too many places in my body to count. I was terrified!!!! I was 26 years old!!!! I took a lot of different treatments (Just to keep me going) because I didn't qualify for any trials at that time. At the end of 2011 Yervoy was FDA approved. I was the first person to get it at my cancer center. 

By the Grace of God & the Prayers of so many I'm still here!!!! By my next scans the cancer was in ONE spot, my right thigh. I was stable for about a year when the melanoma started showing signs of growing and had spread again. So I did the Yervoy treatment again at the end of 2012 & I'm happy to say I'm doing great!!! I will be having my scans again next month Nov. 21st and we shall see where I'm at then...
Just wanted to let everyone know there is always hope!!! Don't ever give up!!!!
God Bless y'all 

Sunday, October 13, 2013

"You Must...For Others!"

My mind is still spinning from yesterday's Miles for Melanoma walk in honor of Amanda & Corey.  I can not describe exactly what this day stirred in me (too deep, too complex for words...at this point), but Herman Melville summed it up for me when he said, "We cannot live only for ourselves.  A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our actions run as causes, and they come back to us as effects."

I'd like to just stop there with the writing, post my pics, and wrap it up with a song...because I'm afraid I won't be able to relay to you the experience of yesterday.

But...I'm not going to do that.  Ya know why? Well, really for many reasons, but most of all, because I just said the word afraid...and when I notice fear come up, my first response is to avoid or hide. For me, fear equals "time to escape".  

I almost did that with this walk....I was asked to speak at the event, to tell my story.  And my first thought was, "No way!  I can't do that.  I'm too scared." At this point in my life, I recognize this crapy anxiety, know that it's fear, and I know (intellectually) what to do about it...
I wish it were that easy, but it's not for me.  So, I run these things by a very wise woman (Hi Kendra!)who says to me after I explain that I have been asked to speak at the walk, "Well, it's not about you.  You have to do this for others.  Be of service. Suit up and show up."

BAM!  Right then, I knew I was responding with a big, fat YES, and that I'd be speaking, whether I was comfortable or not.  

See, one of the many awful things about fear and anxiety, is that it keeps you small, and in self....me, me, me.  These kinds of opportunities take you out of ME and into WE..a MUCH better place to be!

Below you can see the WE...
The WE was glorious.  The WE was connected.  The WE was divine feeling, exhilarating, moving! 

My life is forever changed after meeting the families of Amanda and Corey.  I am so grateful for the opportunity I had to spend time with them, show up for them and others, speak, walk with them, and all who were there in support of this magical event.

You can learn more about Amanda and Corey in the video below...

This day will never be forgotten, and neither will these young women.  We continue to speak out, to educate, to tell our stories (even in the face of fear)...to honor them and with the hope that we will save lives doing so.

And so I ask myself this:

And the answer is this...I would speak out about melanoma, to everyone, everywhere, no matter how big the crowd, to help make change!

#f*ckfear  #speak  #outofmeandintoWE

And a HUGE thank you to all of you who donated to the walk!!!!!

Thursday, September 19, 2013

Came to Believe: Confessions of a Tanorexic Tanning Addict

People come into our lives for reasons we may not even know or understand when we first meet them.  I relish in the discovery of these serendipitous, sometimes ironic moments when I get to see these connections unfold.  I've recently had this type of experience, and would like to share....

I have a new friend, for whom I will call Poppy in this post, to maintain her anonymity.  Poppy and I have been hanging out for about a month now.  When we first met for coffee, I of course, noticed that she was very tan,evenly tanned....all over...fingers, feet, arms,legs, chest, face...all the same color.  My first thought was, "tanning bed goer, for sure."  And then there's me, pale as one can get, with a history of melanoma.  Where do we go from here?  What do I say?  How do I start this dialog? (my brain going full speed with these thoughts)

Yeah, you know I did....I told Poppy my story, she read my blog, we talked a little about what her current tanning practices involved, etc.  And here is one of the many acts of Providence, that I believe occurred for a reason...It is revealed to me that Poppy is a tanorexic tanning addict.

Before I share Poppy's story with you, I will lay out a few key points in the understanding of tanning as a behavioral addiction.  

~Despite warnings of dangers, tanning continues.
~UV rays may trigger a release of pleasure inducing chemicals in the brain.
~Studies show that tanners experience brain activity that mimics the same patterns as the brain activity of a brain on drugs.
~Using tanning beds has a "rewarding effect" on the brain, so people may feel compelled to continue with this behavior, ignoring the dangers.
~Tanning addiction is different from tanorexia, in that addiction is a brain/reward circuit in nature, and tanorexia is more along the lines of body dysmorphia , where the mind distorts the truth, and in turn creates a misconception about what one sees in the mirror.  For example, a statement such as, "I'm getting SO pale and ugly." might be said by someone whom otherwise appears to others as tan.
*So, here is me (obviously, on the left, pale and sporting my latest biopsy scar)and Poppy (on the right) after not tanning for a month..and she thinks she is pale!

Ok, let's have a look at the interview I did with Poppy about her tanning addiction, and see just how similar this behavioral addiction is to other addictions.  

Q: How and when did you begin tanning?
A: I started when I was in 9th grade.  It began when my friends started doing it, and I liked the way I looked.  At first, I just did it for things like prom or if I was going to be wearing a bathing suit.
<possible peer pressure related to image, self-esteem, etc.>

Q: When you started, did you know it was bad for you?
A: Yes.  I knew it was dangerous, had heard it could cause skin cancer, but did not know the specifics, and just thought that the dangers could only happen if you went tanning all of the time.  I was young and healthy, so why would anything bad happen to me?
<having some knowledge of the danger, yet doing it anyway>

Q: How did tanning make you feel?
A: It made me feel prettier, skinnier, more attractive in all ways.  I liked how I felt after I'd go tanning.  It made me feel better about myself.
<possible brain reward and dysmorphic thinking>

Q: Can you identify a "tipping point" when your tanning went from occasional use to frequent use?
A: I think it was when I started going during the winter, with no reason or occasion.  That started for me around the age of 18.  My mom would notice, and tell me to stop.  I would tell her I'd stop, and then try to hide it from...with no intention of quitting.
<increase in frequency, lying about behavior, trying to hide it>

Q: How did you "support your habit" of tanning?
A: Well, in college, all of the girls were so pretty, and I noticed I would tan more, so I got a job at a tanning salon.  That way, I was able to get free tanning when ever I wanted.
<hmmm...this can't help but remind me of an addict that becomes a drug dealer in order to keep up with the increase in use>

Q: Looking back now, did you ever feel the "need" to increase your tanning, more and more, over time?
A: Oh yes.  I would get used to the way I looked and feel like I needed to go to a darker shade.
<sounds like tolerance and a progressive nature>

Q: Were there ever specific situations you can recall that showed your tanning was high priority?
A: Many!  One thing is that I remember being on antibiotics, and knowing you are not supposed to be exposed to UV rays while on antibiotics, yet that did not stop me.  I didn't care about the risks.  And when I'd go to the dermatologist for acne or whatever, the doctor would tell me to stop tanning, but I never listened.
<continued behavior even with warning>

Q: So, let's talk about the present, about where you are today.  You just turned 26 a few days ago, which means you've been tanning for about 12 years now.  Tell me about your decision to stop, and how things have been since you stopped.
A: I have not been to the tanning salon since we became friends...after you shared your story with me, introduced me to Jillian's story . Those really stuck with me.  I could really relate and identify with a lot there.
At first I just told myself I'd cut back, not go as often.  But after learning about the reality, the dangers, the fact that young people get melanoma and can die from it...all that has made me not go.  
There's this one statistic that I can't get out of my head... "From the first time you step into a tanning bed, your risk of developing malignant melanoma is increased 75%"
I am starting to notice my skin tone changing, getting lighter...and I don't really like that.  I'm just now getting to the point where I'm not comfortable with the color of my skin.  I'm committed to not tanning, but honestly, I can see getting to a certain point where I'd say to myself, "Just 10 minutes!"
<withdrawal, having full knowledge and awareness of dangers, yet still knowing you may be back to it anyway, the struggle to STAY stopped>

And so there it is.... an addiction, awareness of the addiction, admitting there is a problem, and then taking action to facilitate change.  As Josh Billings said, "It is easy to assume a habit; but when you try to cast it off, it will take skin and all." 

I am grateful for a new friendship, and for the many reasons Poppy and I are connected!  It's times like this, I clearly see the gifts that come out of something as ugly as melanoma.

Change by Tracy Chapman

#WEcanmakechange  #WEcanspreadtheword  #WEmust

Sunday, September 1, 2013

The Apple Cutter

I have a very vivid memory related to the scar I have on my right arm from my second melanoma.  I’m almost ashamed to tell it, because my thoughts seemed so twisted, vane, and insane, but it’s the truth, honest and open, without holding back.  And maybe, the reason I am so willing to share now about it, is because I have had such a shift in my thinking since then, that I want to show how things can change, thoughts evolve, attitudes progress, and we grow.

Ok, so here it goes….

It was the first warm day, coming out of winter…  You know, a day to wear short sleeves.  I was thrilled, as I love when spring emerges and winter clothes are shed.  I looked forward to my short sleeve tees and tanks!  And today was the day for that!

I had an appointment at the Apple Store, to meet with a “Genius” to figure out why something with my computer was not working.  All ready to figure out this mess, I waltz into the store, donning a tank and a wrap sweater, as it was still a bit chilly when I left the house. 

I plop my stuff upon the Genius Bar, start to tell the Genius about my troubles, and as I’m listening to him start to explain the nature of the problem, I start to get warm.  I take off my sweater.  For reasons I can’t explain, I go from a total attentive listener to a self-absorbed obsessor, focused only on one thought: My scar, revealed for the first time since my surgery, looking very big and purple and jagged and ugly, is going to have this Genius thinking I am a cutter.  Yes, a cutter.  How on earth did that even come to mind?  I don’t know, but I do know that as the Genius’s eyes met my newly unveiled scar, ALL I could think of was that! 

The Genius was talking, I was looking at him, his mouth moving, explaining what I needed to do to fix this problem (the computer problem that is, not the mental problem I was having in front of him), but I was no longer hearing him.  I was swirling in my thought, my one thought…of him thinking I was a cutter. 

I left the Apple Store, not knowing how to fix my computer problem, but also exiting with a new problem…a self-created problem.

Well, this surely was not going to work!  I cannot hide.  I cannot waste my time in Crazytown!  I need to turn this around.  Breathe.  Pause.  Breathe more.

And what came was this…”This is me.” 

This scar is part of me.  It has a story behind it.  A story of melanoma.  Not of a cutter.  So, TELL IT! 

And after that Apple Store moment, I have watched my scar evolve, as well as my thoughts.  I have seen my scar go from deep purple and numb, to red and itchy, to pink and wide, and more.  I have seen my thoughts go from cutter scenario worry, to “this is me”, to “TELL the story”.

And today, I wear my scar proudly, use it as a conversation piece, talk about it when asked, use it to educate.  

My scar = my story.

Photo by Robert Sturman