Showing posts with label melanoma. Show all posts
Showing posts with label melanoma. Show all posts

Tuesday, September 14, 2021

Earth Angels

 I don't even know their names. They were just two women camped out in the visitor lounge outside the palliative care unit of our local hospital. I would learn that they were sisters and that their mother was in the room next to my daughter Jaime's. Jaime, after being diagnosed 9 years earlier, at age 20, with melanoma caused by her tanning bed use, had been a "guest" of this hospital for 5 weeks, and within a couple hours, she would leave us and her pain and suffering behind.

I had left Jaime's bedside for a short break. I went to the lounge and curled up in a recliner, physically and mentally exhausted, with my world taking a deep dive into the darkness that only a mother who has lost their child can know. 

My husband came in and gently asked -- "Are you okay?" I snapped back out of my fog with the fury of an injured wild animal -- "My daughter is dying, and you ask me if I'm okay???" My husband, who needed consoling himself, was just lost in my anger and couldn't respond.

Then, as if it had been choreographed and rehearsed to perfection, those two women pulled up chairs on each side of me and took my hands in theirs. One told me the story of how her teenage son was in a horrible auto accident and died in her arms. She told me how painful this was going to be for me; she told me that I would want to die every minute of every day for a very long time. And she told me that it would be the most painful thing I would ever face but that I would survive. She was right about everything.

I returned to Jaime's room, knowing that what was about to happen would be the best thing for my little girl but would rip my heart right out of my body. A few minutes later, the nurse came in with a small stuffed lamb that she said the women next door wanted me to have. 



Such a loving gesture ... one that had even more meaning to me than they could ever know. Years before that, Jaime's nephew, my grandson, had died when he was a week old. I had put a little stuffed lamb in his casket with his tiny body. And here I was once again clutching a little lamb for comfort.

You might think all this is coincidence, or fate, or an accident, or maybe pure chance ... but I believe it was more than that. I think people are sometimes put into our lives for a specific reason. I don't know how this happens, but it just does. I am so grateful to those two strangers and have thought about them often over the years. We had a bond, a special moment in time, and I don't even know their names. But I call them "Earth Angels."

 

 Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations) 

 http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)

Friday, January 24, 2020

Ding Goes My Heartstrings

A Facebook friend of mine who lost her young daughter to melanoma posted about a broken alarm clock that somehow would occasionally sound its alarm, like when the family was all gathered around the Thanksgiving table with the dreaded empty chair or when the conversation turned to memories of their daughter. I responded that this didn't sound at all unusual to me ... because since the death of our daughter Jaime at age 29 of melanoma, we have a chatty ceiling fan.

This is the ceiling fan in our bedroom. Looks like your typical fan, right? Well, on occasion, it becomes, believe it or not, Jaime's means of communication ... her way to say hello or in some cases, not often but more often than we like, to keep us awake all night.


You see those two short chains with the metal bobs on the ends? Somehow she gets them to knock against the glass globes, causing a loud DING. Sometimes it is just one ding (and I can smile and say "Good night, Jaime! I love you" as I roll over). 

                      (You may need to turn up the volume on your computer to hear the dings here)


Other times she is chatty and keeps it going with DING, DING, DING, DING, DING, DING ... (and I guarantee that in the middle of the night it is not so entertaining!).



Sometimes she goes for a long time without showing off her talent -- months or even years; sometimes she makes it happen several times a week. Sounds weird, right? We just say "Jaime's here! Hi, baby girl!" and let that ceiling fan warm our hearts with Jaime's DINGY thing!!! Bizarre is our new norm!
 
For you doubters, the dings came at all times of the day or night, in all seasons, in all weather, with windows open or closed, with fan on all speeds. My engineer-minded husband has tried to logically figure it out but had to conclude that it was Jaime.
 
The last time we heard the dings was over a year ago. I remember the last time because her dinging did not stop. It seemed that she was really excited about something or really agitated. The dinging continued throughout the day and the night. I told her that we needed our sleep ... yes, I'm the crazy old lady who talks to ceiling fans ... but it continued through the second night, at which time my husband flipped the switch to turn off the fan. Finally, sleep!

But when we turned it back on the next day, only quiet came from that fan. And that is all we have heard from it for more than a year.  I don't know what she was trying to tell us, if anything. I don't know if we pissed her off by shutting down her means of communications. I do know that I miss those dings, and every day I hope for their return.

[UPDATE July 2022: It has been a few years since I wrote this blog and another before that (When Angels Speak) since Jaime's last ding. But I'm more than delighted to report that in mid July 2022, as I was recuperating from my final chemo treatment for breast cancer, my husband and I heard one single ding come from this fan. Just one. But to me it said so much. It said "I'm still around and always will be. I've watched your struggle with cancer and I'm proud of you. Can you feel my love? Can you feel the strength I'm sending you?" Yes, baby girl, I can ...]


Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)


http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)
 

Tuesday, September 18, 2018

February Was Once "Fear"uary

February is always a difficult time of year for me. 

Not only is it dreary and cold but it was during February in 2007 that my 29-year-old daughter Jaime walked into the hospital not knowing that she would never walk out. 

I took her to the emergency room for pain management for her Stage IV melanoma, not an uncommon thing for us to be doing at that point in time since the cancer had spread everywhere. 

Usually we both fought for her to not be admitted (one time I even smuggled her out against doctor's orders) ... just get her pain to a manageable level and let us go back home ... but for some reason neither of us balked this time when they wanted to keep her overnight, that turned into just for the weekend, that turned into 5 weeks, that turned out to be the rest of her life. 

That time was a nightmare for Jaime, me, and our family, knowing where we were headed but not wanting to believe it. 

We were out of treatment options, which years ago were few; there was nothing left to try ... yet Jaime refused to quit fighting. When the doctor offered her hospice, she responded with, "Will they work to make me get better?" When he sadly shook his head no, her words were sharp and direct -- "Then hell no!"   

We were in a free-fall, unable to control anything, feeling so helpless and hopeless but at the same time needing to stay strong and positive for Jaime. It was the ultimate conflict, but we wore our happy masks (I still have mine and wear it frequently!) for our girl. 


We had successfully fought off this evil beast of a cancer for 9 years, but Jaime's little body had taken as much abuse as it could and there would be no more surgeries, no more pumping poison through her veins.  As much as we all wanted to rewrite her story, in February 2007 the end was quickly approaching.

Somehow, no matter how hard I try to ignore these memories, every year at this time they creep back into my mind and remind me how much I HATE melanoma and how unfair life can be. I am reminded of that relentless fear that gripped us all that February, along with the love that surrounded us as we faced the stuff that horror movies are made of

But one thing I never need to be reminded of is how much I love and miss our beautiful baby girl!


Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)


http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)
 

Monday, July 30, 2018

Hello Cancer, Goodbye Friends

Friends come and go throughout our lives. Some stay for a short time; others for a lifetime. Some are casual; some are close and intimate. But even those close friendships, the ones you think will be there through thick and thin, are put to the test when you are diagnosed with cancer or you become the caregiver of a cancer patient. Probably not at first, when they are eager to provide support, before things get really rough. But after a while, you notice they have moved on with their lives while you are stuck in cancer hell!

After a lot of thought about this, I have come to realize that it is not their fault alone. There is enough guilt to go around. You, the cancer patient or caregiver, are also to blame, even though it's totally out of your control. Cancer can be very destructive to, among other things, friendships, and some of those friendships will not survive. Sadly, they just become another casualty of cancer.



When my daughter Jaime was diagnosed with melanoma at age 20, she had lots of high school and college friends who were very close to her. They were precious to her, and she would do anything for them. Over her 9-year battle, many of those friends gradually drifted away. They had living life on their minds; Jaime had surviving cancer on hers. They were planning careers and weddings; Jaime was planning her next surgery or treatment plan or her funeral. 

To avoid being a downer, Jaime never let on about how bad her cancer was or how horrible she felt. She always put a positive spin on it, along with a huge smile. It was her way of coping with the nightmare she was in, but at the same time, she was sending out very confusing messages. Then she couldn't understand why her friends didn't offer the support she so badly needed. In their defense, they just didn't have a clue that she needed it. But, in Jaime's mind was the question, "What kind of friends are they?" Cancer is really good at creating emotional conflict, along with everything else.

However, I was so touched that even at their young age, some would come to the hospital during Jaime's last days and sit in the lobby or the chapel, sending notes through the nurses that they were close by but didn't want to intrude. Others would visit, and laughter and love would fill the hospital room ... until they would leave and fall into my arms in tears. One even planned a pizza party that had the nurses fuming because too many people were in the room! 

They were all so young, and death was a foreign concept. Yet some continued to keep Jaime in their lives, thoughts, and hearts throughout her journey, surrounding her with love and comfort and truly being a friend even when that became extremely difficult. You know who you are, and I am forever grateful!

As Jaime's caregiver, I was also struggling with friendships. My world had been bombarded by cancer, and caring for and making memories with my daughter was my top priority. There really wasn't room for much else. 

For a friendship to work, it really needs two people ... and I no longer could contribute. I also understand that my friends stopped calling because they were protecting themselves emotionally from the disastrous news they might hear. They no longer knew what to say or do, so it was easier for them to stay away. And I get all that. But I sure could have used their love and support during the worst days of my life. Again, cancer kept marching through our lives, leaving a path of destruction and chaos behind.



Cancer is no one's friend, and it makes having friends really complicated. Everyone handles a cancer diagnosis differently, whether you are the patient, caregiver, or friend, and friendships can be more fragile than we think. Many, including marriages, can't handle the stress that cancer creates. But the ones that can will be even stronger!  



Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)


http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)
 

Sunday, April 2, 2017

40 Years of Celebrating Jaime

It is hard for me to imagine that this week will be my baby girl's 40th birthday. Wasn't it just yesterday that she just a beautiful infant (see Birthday Girl)? Wasn't she just a very loud and energetic child? Wasn't she just a snarly teenager? Wasn't she just a proud college grad? Wasn't she just a blushing bride (see With This Ring)? Wasn't she just a terminal cancer patient (see Blowing Out Birthday Candles)?

Those memories, both amazing and horrific, are all that's left. My Jaime will not be here to celebrate this milestone or any others in the future because melanoma took her life when she was 29. Thanks to her love of tanning beds, she was diagnosed when she was 20 and only celebrated 9 more birthdays. And for many of those, she wore a brave mask to cover her pain. Melanoma has a nasty way of stealing birthdays!

I know that many of you have come to know my only daughter, my best friend, my hero, my courageous melanoma warrior Jaime through my stories on social media. However, in honor of her 40th birthday, I'd like to share a few of the
pieces that made up our Jaime.

Jaime was, in many ways, unique, seeming to live life at a faster pace than most, perhaps somehow knowing that her time here was limited. She was the ultimate free spirit. No one else could make me so angry or make me laugh so hard. She had a huge heart but wasn't all sweetness; there was plenty of spice mixed in. She definitely did her own thing and wasn't concerned about what others thought. She was outspoken, sometimes brutally outspoken. Either you adored her or you couldn't stand her -- there was no middle ground -- and she didn't really care. But if you were her friend, she would do anything for you!

She always wanted to be the center of attention and usually made sure that she was, much to her brothers' dismay. Jaime was that annoying child who always had to be first in line. She never met a stranger, and she could talk your ear off. But she always had that beautiful smile on her face and a contagious laugh. And she loved to sing and dance. For Jaime, life was one big party ... her show and she was the star!

As a toddler she looked like an angel with unruly strawberry blonde curls going everywhere, bright blue eyes, and freckles flowing over her nose and down her cheeks. But when that little angel opened her mouth, her vocabulary made your toes curl up and your eyes pop out. The "F" word was among her favorites ... and remained so throughout her entire life. I tried to clean up her potty mouth by washing her mouth out with soap, until one day she gave me a bubbly smile and declared that she was starting to like the taste of that!!

At the first parent/teacher conference of each school year, Jaime's teachers would tell us that we should be prepared for them to recommend holding her back to repeat the grade, but by the end of the year they couldn't wait to pass her along to the next group of unsuspecting teachers. The school psychologist assured us that Jaime would be a powerful leader as an adult ... but because of the damn cancer, all she could do as an adult was fight for her life!

I'm sure she was responsible for giving her teachers more than a little gray hair! She was the child who got bored and roamed around the school for hours, ending up in the nurse's office every day just to chat. It was impossible to know whether Jaime was a good student in elementary school because she never really took a test. She insisted on being the first student to finish a test so she just went through and marked a, b, c, d answers, without reading the questions. We weren't even sure she could read, but she did graduate from college with honors so I guess she had us all fooled!

To my knowledge, she never discriminated against anyone, having friends of all colors, faiths, cultures, and sexual orientations ... but she did not hesitate to judge people based on whether or not they were a$$holes (a word that took second place in her list of favorites!).


Every summer Jaime participated on the YMCA swim team, not because she was a great swimmer or was competitive in any way, but because she could hang out every day with friends of all ages. For her, it was a summer-long party, and swimming a lap now and then was just the price she was willing to pay. Jaime was also goalie on a soccer team, where she spent each game perfecting her cartwheels in front of the goal box. She was a social animal, not an athlete!

Then that little girl then became a feisty, independent, defiant, moody teenager with a wild streak, who declared war on her parents and any other authority figures! One night when she was out with friends, her phone butt-dialed us. We could hear her laughing and proclaiming that "I'm so drunk! And my parents don't even know that I drink!!" Giggle, giggle, giggle! Well, her parents did then, and they weren't laughing. That got her grounded for months.

That snarly teenager blossomed into a college student but not without some bribery. Her high school dean had destroyed her confidence by telling her she could never pass a college class. But after passing the first class with an A (with a lot of tutoring from Mom), she found her lost determination and continued to take and pass classes until graduating with honors.



Jaime was very orderly and organized (must have gotten that trait from her daddy) -- and a control freak. She planned and executed the magical wedding of her dreams without a single hitch, but I'm sure her vendors were dreaming about executing her before it was over!

Her career in fashion merchandising had its start and devastating finish at Fossil, with her being told to leave because of her melanoma diagnosis. But I will save that story for a future blog dealing with cancer patients and employment. She did, however, go on to create her hand-crafted jewelry business, which I now continue for her.

And that brings us to the Jaime you are more familiar with, the one who fought melanoma for 9 years with grit, determination, and her delightful sense of humor, never allowing the cancer to define her. She made me so proud of the fierce warrior she became ... and she never lost her love of life, her spunk and sparkle, or that beautiful smile.

When we were planning her headstone, I was told to think of a 6-word saying to include on it. When I asked her oldest brother Ben about it, he said without hesitation "She Gave the World the Finger." That is not the saying that we chose to live on her grave marker for eternity, but it was oh so fitting! Jaime definitely lived life her way ... and lived it well.

Jaime was not perfect -- but she was so perfectly Jaime!!


Happy 40th Birthday, sweet girl!

Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)

http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)

Sunday, March 12, 2017

Life Interrupted, 10 Years Later

Life has its ups and downs. You buy a new car and then have a fender bender; you graduate from college and then it seems like forever to get a job; you find the love of your life and then you discover that he/she is not your soulmate after all.

But imagine that your life involved climbing up the slope of a steep cliff with someone you love more than life itself, some times dragging them and some times being dragged by them and some times carrying them on your back ... only to reach the top and step over the edge into a free fall, losing your grasp on your loved one along the way.

That is kind of the way it feels to lose a child to cancer. And I've been in a free fall for the past 10 years.

My daughter Jaime was 20 when we heard those terrifying 3 words "you have cancer." It was also the first time we had ever heard the word "melanoma." She had been diagnosed with melanoma, an often-fatal form of skin cancer, caused by her love of tanning beds since about age 14. But everyone said "she was too young for cancer" -- and "she didn't look like a cancer patient" -- and "it was just skin cancer, right?" WRONG!

It's been 10 years this week since Jaime took her last breathe, and I feel I should have something important to share. I feel like I should have encouragement for those mothers who are also grieving but not as far down the road as I am. I feel like I should have some answers to all the questions that all of us angel moms ask. But I don't.

I hate to tell you, but it does not get easier; it just gets different. The grieving continues, but you do get better at wearing your mask, the one you put on whenever you are not alone. The unimaginable pain is chronic, but you somehow get used to carrying it and it is not as raw or heavy.

You will never be the same person you were before. Your life has been divided into your life with your son or daughter and your life after having them ripped from your arms. My "post-angel wings" life now is nothing like it was when Jaime was alive. As I said, I'm in free fall.

Ten years has been an agonizingly long time to be without my child and best friend ... honestly, much longer than I ever hoped I would be separated from her ... and at the same time, it seems like it was just yesterday that she came through the front door yelling "Mom." Jaime was always the center of attention and I was her shadow. Now I am just a shadow looking for its missing object.

That doesn't mean that my life has no meaning or direction. I still have a husband and 2 sons that I love with all my heart, but my direction has only come from a little voice whispering in my ear, giving me passion and commitment to fight the tanning beds that took my baby girl.

One thing I have learned in the past 10 years is that life is not fair. Growing up, my mom always would tell me that because I was such a bleeding heart. But now that I'm here and Jaime is not, I do believe that my mom was right. It's really not fair -- not fair at all! And don't assume that because you have gone through the unthinkable, nothing else bad will happen. You think you have paid your dues, but life just keeps happening.

Then there is the tremendous guilt. She was my child and I should have
been able to protect her. I should have been able to fix her. I've always been a fixer, but not this time. Why not this time? Then there was the guilt that I was not the same wife I had been before Jaime's death, and not the same mother. I realized how badly my family wanted me to be the same ... but that Donna was no longer here. She had died with Jaime. The guilt has been suffocating!

For the first couple years I had a never-ending loop running in my head of all the events leading up to Jaime's death. All the second guessing; all the what ifs; all the searching for answers when I wasn't even sure what the questions were ... playing it over & over & over. I finally came to realize that no matter what I had done or hadn't done, the final result would be the same. And as weird as it sounds, I haven't worn a watch or carried a purse since the day Jaime died and I have no idea why that is. I've just learned to accept that not everything has an answer, at least not one I understand.

At the beginning of my grief, I heard all the comments from people who mean well but just don't know what to say -- "she's in a better place," "it was God's plan," "at least she is free of pain," "I understand your pain because my grandmother died," etc. FYI: The best thing you can say to a grieving mom is "I'm sorry," "I love you," " He/she (and use their name!) will never be forgotten," or a story about the son or daughter, or even just a hug.

It was 3 years before I could look at Jaime's photos. And then it was not because I wanted to but because I was forced to as part of the video presentation on tanning beds that I had agreed to do. It was so very painful to dig through all the pictures from a better time, a happy time, but I did so with a lot of tears. The nightmarish memories from Jaime's death were just beginning to let the happy memories of her life come forward.

Somewhere along the way, I learned to recognize the warning signs that I was sliding into that deep dark hole of extreme grief and despair (you angel moms all know the place I am talking about) and eventually gained the strength to not allow my mind to take me there. The climb out was extremely exhausting. If you haven't been there, it's not someplace you ever want to visit.

It took me several years to feel comfortable about going out socially. Small talk scared the crap out of me. The question I feared most was the pleasant, simple "How many children do you have?" And if I got through that one without breaking down, there was usually the innocent follow-up "And where do they live?" I was also aware that people who knew about Jaime's death felt uncomfortable around me, like I had a contagious disease, and they were afraid of doing or saying something to cause me pain. Let me assure you that I was already in more pain than you can imagine. You couldn't make it any worse -- unless you tried to ignore or avoid it.

About 5 years after Jaime's death, I began to smile again and really mean it. It would be almost 10 years before I would hear myself laugh -- not a tears-running-down-your-face, pee-running-down-your-leg laugh like Jaime could provoke, but it was a laugh. And it was such a strange sound coming from me after so long that it actually startled me!

Ten years out and I can finally tell Jaime's story without sobbing ... at least some of the time. I don't think it will get much better, but I will not stop talking about how her use of tanning beds took her life at 29 because the killing has got to stop. Melanoma is a cancer that, in many cases, can be prevented ... and it must be prevented. I have a mission. I did not choose it but I have it. Some of the time I don't even like it but I have it. And I will continue on that mission until that little voice in my ear leads me in a different direction.




Ten years out ... and I can't tell you everything is fine or back to normal (whatever that is) or that the road of grief is behind me. I still find it hard to imagine that she is really dead. But I can tell you that, even after 10 years, Jaime hasn't left my heart or my side. I may be in free fall, but she is right there with me. That I do know.



Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)

Friday, January 6, 2017

When Angels Speak

When my 29-year-old daughter Jaime died from melanoma (caused by her tanning bed habit), people told me to watch for signs from her. I was skeptical, as I'm sure that many of you reading this are, but in the almost 10 years since her death, I have seen enough to make me a believer. At some point, you don't question -- you just listen when angels speak!

I'm not sure when I stopped trying to logically explain unusual events and just accepted that my Jaime was the responsible party. Perhaps it was when I put a bouquet of flowers in the vase of her headstone. Yes, I did notice that there was one white carnation in it, and yes, I did know that Jaime hated carnations, but I didn't think it would matter. The next day when we returned to her grave, the flower arrangement was untouched ... except that the white carnation was lying on the ground and had been flattened.

Or perhaps it was when her dad and I and her brother Tim were sitting in our backyard, and we were joined by hundreds of beautiful butterflies. Or maybe it was when I was filming a PSA about Jaime and the dangers of tanning when a strange tapping on the glass behind me stopped everything, which turned out to be a dog that wasn't even supposed to be there. Or could it have been when our front yard was covered with little white feathers and the neighbors' yards had none?



And the list goes on and on and on ...






Most recently, my husband and I were visiting Las Vegas and were in a hotel lobby. Now before going any further with this story, I need to give you some background. Jaime had a little blonde chihuahua named Peanut. She had rescued Peanut from a puppy mill, and they adored each other.


Okay, back to my story! Into the lobby walks a young couple with a little blonde chihuahua prancing along on a leash. The instant the puppy spotted me she dropped to her belly and scooted across the lobby floor until she reached my feet, never losing eye contact with me. She then stopped and just looked up at me. The young couple was baffled by their dog's behavior, saying that she had never done this before. I leaned over and petted her head ... and then poof, the magic was over. She just got up and trotted away without looking back. I knew what was happening and so did my husband, and we could only smile at each other and softly whisper "Jaime."

Now perhaps you are thinking that this was just some bizarre dog behavior and had nothing to do with a sign from beyond, and I get that. But in the past 10 years, bizarre events seems to be attracted to me, so I know that little puppy was delivering a message from my very special angel ... that she was thinking of me and loved me and that there was no way I was going to do Vegas without her!

Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)

Tuesday, May 24, 2016

The Giant Hug (aka Melanoma Patient Symposium)

As soon as my husband and I stepped foot off the plane from Dallas at Newark New Jersey Airport, I knew I was in trouble. My eyes began that now familiar feeling of a waterfall starting to cascade down over my cheeks.

This was the first time I had been to New Jersey in 10 years ... and the first I had ever been there without my best friend and precious daughter Jaime, who died at age 29 after a 9-year battle with melanoma. So many times I had walked through that terminal shadowing our princess and pulling our bags ... but not this time.

What had I gotten myself into when I agreed to speak at the AIM at Melanoma/Atlantic Health System patient symposium in Morristown? Why didn't
I think about it for longer than 2 seconds when Dr. Eric Whitman, Jaime's melanoma specialist for 5 years, asked me to tell Jaime's story and update the audience on the ongoing battle with the indoor tanning industry? Really ... what was I thinking???

Well, I did have a few moments of being a blubbering idiot, but then I felt Jaime's presence and the love that everyone there still had for her and I knew that I belonged there. It had been 10 years but Jaime had not been forgotten, and I realized that even though she couldn't speak herself, she was speaking through me (although I did censor some of her more favorite 4-letter words!).

So even though public speaking is not really my thing, I put on my big girl panties and did what I was asked to do ... what I needed to do ... and that was to spread awareness about the dangers of tanning bed use so that maybe ... just maybe ... someone would be spared from losing their Jaime. 

I entered into this as a rookie. I had not attended a patient symposium before and frankly thought they sounded stuffy, with a lot of technical/medical terms that I might recognize but certainly couldn't understand. After all, I had failed my college biochemistry course so it doesn't take much to put me into anxiety mode!

To my surprise, the doctors who presented (Dr. Whitman and Dr. Bickenbach) brought the information down to a layman's level, and I was totally fascinated with what I heard. As I mentioned, Dr. Whitman was Jaime's wonderful melanoma specialist and now Director of the Atlantic Melanoma Center and the Carol G. Simon Cancer Center at Morristown NJ Medical Center. Dr. Bickenbach is a surgical oncologist there and the new (really cute!) kid on the block. You need to remember his name because I'm pretty sure you will be hearing lots more about him in the future.

But my main take-home point (term I learned from the symposium!) was that the auditorium was just bursting with love and compassion and hope. My first thought was that it wasn't just a symposium ... it was a giant hug.

The doctors were both very approachable and made everyone feel comfortable and welcome. The patient panel told stories of their difficult roads to survival, and all showed such gratitude and admiration for the two amazing doctors who had helped them along the way.

I know, I know ... it all sounds so warm and fuzzy. Well, it was! And in the world of melanoma, warm and fuzzy just doesn't come along that often, so it was most welcome.

So as I reflect back over my trepidation upon our arrival in New Jersey, I realize that I needed that giant hug ... to be around people who understood what Jaime had gone through, people who had loved and cared for her so many years ago, people who wanted to hear the message about melanoma prevention by staying out of tanning beds.

Thank you, Dr. Whitman, for asking me (and Jaime) to be part of such a wonderful event ... and thank you, sweet Jaime, for being by my side the whole time.



See all videos from the symposium at https://www.youtube.com/playlist?list=PLOnM_erAQqID5av4kIzM1PkeCoNLYZfw1


Melanoma Mama (Jaime's mom, Donna) 
 
Twitter: @melanoma_mama
Facebook: http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
Etsy: https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
Ebay: http://stores.ebay.com/Sweetpea321 (Jjem Creations)

Sunday, December 20, 2015

Dare to Dream

Last Friday was just a normal Friday ... or as normal as the Friday before Christmas could be ... until I received a notice from the FDA of a HUGE, earth-shattering announcement. They were proposing a ban against tanning bed use for all minors under 18 in the US! I had heard through the grapevine that this ban was coming, but I didn't know when. And I wasn't holding my breath because I'd been holding it for too many years already. Then suddenly, last Friday became AMAZING! The planets had aligned!!

It was almost 6 years ago that presentations were made at a FDA hearing on the issue of teens and tanning beds. One of my friends from the melanoma community gave this presentation that included Jaime's story. 


Her presentation was one of many that shared stories about how tanning beds had changed or destroyed young lives. The hearings seemed promising ... but then the waiting game began. If you know me, you know that I am not a patient person, so ...

In the meantime, my attention turned to state legislation when Texas introduced a bill to restrict children under 16 from using tanning beds. Even though it wasn't the under-18 bill that I was dreaming of (and many thought it was just a foolish pipe dream!), it was a step in the right direction. With help from Jaime's story, it passed, which was surprising for such a conservative state. (And eventually, a full under-18 tanning bed ban would pass as well!)

Others began to share my seemingly impossible dream of an under-18 ban in every state. I'm not sure I even really believed that it was possible ... but I was being pushed ahead by some energy and force that insisted I just keep going. (Thank you, Miss J!) Then along came AIM at Melanoma, working on an under 18 tan ban in California, and I was hooked! Although it was far from easy, it passed! Twelve other states would follow to pass under-18 tan ban laws, but for years many more tried and failed. I am proud, along with Jaime and many, many others, to have been part of most of these difficult battles, but my dream was that all 50 states would pass these laws to protect their children by keeping them out of tanning beds ... and there was a long way to go.

Then just as my energy was draining and my dream was dimming, last year the FDA renewed its focus on under-18 use of tanning beds. It announced a strong recommendation against the use of UV devices by all minors. Many of us thanked them, but also let them know that it just wasn't enough.

And that led to Friday's announcement. Now there will be a 90-day period to respond to their proposal, and assuming it will be adopted ... that will put it becoming official just about on the 9th anniversary of Jaime's death!

The stories of all the melanoma victims whose cancer was brought on by tanning bed use have been heard, including my Jaime's. The years of hard work by thousands of supporters for this teen tan ban are FINALLY bearing fruit. Many lives will be saved!! I am proud to have played a role in this, and my sincere thanks go out to everyone who contributed to making this happen, to those who dared to dream.



But wait ... we're not done yet with the indoor tanning industry! Visit and "like" our Facebook group Pull the Plug on Tanning Beds to keep updated regarding our continuing efforts. Now that we have seen the impossible become possible, there is no dream too big!!


Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
http://stores.ebay.com/Sweetpea321 (Jjem Creations)

Friday, May 29, 2015

Birth of an Anti-Tanning Bed Grassroots Movement

Previously published on May 21, 2015, at http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/




Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.



My Jaime's story gave me the passion and conviction to become "the indoor tanning industry's worst nightmare." The day after Jaime's funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.

 

I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed ... but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime's story for both of these laws.



As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety ... but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.



It has been up and running for about 5 months, and now has almost
1,900 members [in 2021, close to 4,100]. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that "glow" for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.


There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons' Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising "self-harm," which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.



Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 [now 300+] colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. [Dr. Sherry Pagoto, who did the original research on this topic for the University of Massachusetts, is providing guidance.] We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.



Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!



Melanoma Mama (Jaime's mom, Donna)

Twitter: @melanoma_mama
Facebook: http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)

http://www.facebook.com/BanTheBeds (Pull the Plug on Tanning Beds)
Etsy: https://www.etsy.com/shop/sweetpea321 (Jjem Creations)
Ebay: http://stores.ebay.com/Sweetpea321 (Jjem Creations)
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf
Eight years ago, my daughter Jaime died from melanoma, which the doctors believed was from her use of tanning beds in high school and college. She was diagnosed when she was 20 and fought the evil beast of a disease until her death at 29.
My Jaime’s story gave me the passion and conviction to become “the indoor tanning industry’s worst nightmare.” The day after Jaime’s funeral I began going after the indoor tanning industry and their lies and deception. I drew their wrath by commenting on magazine and newspaper articles on the internet about the dangers of tanning beds (see http://www.vice.com/read/i-was-paid-to-go-undercover-for-the-tanning-industry-122). Social media was in its infancy; Facebook and Twitter had not yet been born.
I also contacted my state legislators about writing a bill to ban teens from using tanning beds but I was ignored, and it would take several years before the Texas legislature would have such a bill introduced and passed … but it did. Two of them in fact. The first one was weak, but the one that followed was a full under 18 ban, and I testified with Jaime’s story for both of these laws.
As Facebook grew and melanoma patients found each other, many groups were formed. There were groups for skin cancer or melanoma in general, groups for survivors, groups for support, groups for mothers of melanoma patients, groups for care-givers, groups for individual melanoma journeys, groups for fundraising, groups for ocular melanoma, groups for pediatric melanoma, groups for research, groups for grief & remembrance, groups for advocacy, groups for sun safety … but I recognized there was a void. There was no group or page devoted entirely to the dangers of tanning beds. So Pull the Plug on Tanning Beds was created.
It has been up and running for about 5 months, and now has almost 1,900 members. January was designated Tanning Bed Dangers Awareness Month since it is the beginning of the peak tanning bed use time for teens wanting that “glow” for Prom and Spring Break. The page has provided photos and information regarding tanning bed risks that have been shared across Facebook and Twitter.
There have also been numerous activities that the members could participate in, and many have done so. These include contacting fitness centers to ask about whether they provide tanning beds at their center and attempting to educate them to the contradiction between promoting a healthy lifestyle and offering cancer in the form of tanning. We have also tried to educate the customers of tanning salons through the salons’ Facebook pages and to identify any false advertising and notify the FTC. Another project is to make Facebook aware that tanning salons with Facebook pages are advertising “self-harm,” which is something that Facebook has a policy against. And our members are kept up to date on the latest legislation in all states.
Our largest project has been writing letters/emails/Facebook messages and posts/tweets to over 200 colleges and universities in the US, asking whether they have tanning beds on campus or in off-campus housing and whether tanning salons are merchants in their college cash card programs. AIM at Melanoma was kind enough to draft up a letter for our use. We have received over 40 replies, with most stating their tan-free campus policy. Some, like Michigan State, are reviewing their criteria for selecting merchants for the student cash card program or for their discount program. Our message is being heard; colleges now know that concerned people are watching them. They cannot continue to promote, or even be perceived to promote, risky behavior in their students by making tanning beds more easily accessible.
Every day new projects that pertain to tanning beds come to our attention, and there is something in our group for everyone who wants to Pull the Plug on Tanning Beds. I hope to see you there!
- See more at: http://www.disruptivewomen.net/2015/05/21/birth-of-the-pull-the-plug-on-tanning-beds/#sthash.J3JLflVi.dpuf