Purple, Pink, or Black: It All Sucks!

Kerry Harvey, the 24-year-old pancreatic cancer patient who shook up the breast cancer community with her statement "I wish I had breast cancer" a couple weeks ago [in 2014], has died. She was a brave young woman who spoke her mind to create pancreatic cancer awareness, even during the precious last days of her life.

Kerry, as part of a pancreatic cancer awareness campaign (the "purple" cancer) in the UK, expressed the sentiment of many of us touched by a cancer that is not the "pink" one. It is not cancer envy ... no one wants cancer and no particular cancer is better than others ... and it in no way diminishes anyone's cancer journey. It is simply that breast cancer gets more attention, more awareness, more funding, more research than other cancers. I get it. I understand where the campaign is going, and it is unfortunate that it has to go there to get the attention pancreatic cancer deserves. But sometimes you just have to get LOUD to get your message heard, and I think this ad campaign was successful in doing that.

Don't get me wrong ... I think all cancers, no matter what color is associated with them, are horrible, but some offer more hope than others for survival. I've had close family and friends die from breast cancer, as well as melanoma, and I am a bladder cancer patient myself [Update 2022: I am now also a breast cancer patient]. No cancer is a "good" or "fun" cancer, and I have no clue how the breast cancer community twisted that message from this ad. Quite honestly, if I were diagnosed with pancreatic cancer, because of its dismal prognosis I would wish I had ANY type of cancer other than pancreatic!

The breast cancer community's reaction on social media to this ad was fast and furious. The words "vile," "offensive," "despicable," and "reprehensible" were flying around Twitter and Facebook among the ruffled feathers of the breast cancer advocates. I was disappointed to see people from that community whom I have known and respected for years, men and women, physicians and survivors, with such an ugly knee-jerk reaction, as if Kerry were personally attacking them or those with breast cancer. But most concerning to me, where were the compassion, caring, and support for a young woman struggling with a terminal disease? Instead Kerry received hate mail and death threats from the "pink" side.

One leader of the breast cancer community suggested that the ad campaign was a missed opportunity to educate.  But I don't agree. I didn't know much about pancreatic cancer before the ad launched, but now I know it only has a 3% survival rate and that the prognosis is only about 4-6 months from diagnosis. And I know that pancreatic cancer is a bottom-feeder at the funding pool for research. It is a nasty disease without much hope! I also learned something about many in the breast cancer community ... and that saddens me.

Kerry just wanted to live but there was no cure for pancreatic cancer or even effective treatments. My daughter Jaime who died of melanoma (the "black" cancer) at age 29 just wanted to live but there was no cure for melanoma or even effective treatments. Too many young adults ... too many people ... are losing their dreams and their futures to cancer, lots of different cancers with lots of different colors. All cancers need more of the recognition that breast cancer has, so forgive us for being jealous. We are not jealous of the disease or the pain and suffering and death that comes with it but jealous of the awareness, funding, and research. 

It all comes down to hope. Kerry just wished, if she had to have cancer, that she had a cancer that would give her a glimmer of hope. All cancer patients deserve to have hope. It is up to all of us to work harder so that more cancer fighters have the tools they need ... no matter what color awareness ribbon they wear.

Rest in peace, Kerry Harvey. 


 Melanoma Mama (Jaime's mom, Donna)

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A Note from Mom Doesn't Block the Rays

Many state legislatures are currently considering bills to restrict teens from using tanning beds. They got the part right about wanting to ban minors from their use because the increasing popularity of tanning beds is related to the climbing rates of skin cancer and melanoma, the fatal type of skin cancer. Actually from 1970 to 2009, the incidence of melanoma has increased by 800% among young women and 400% among young men, and it continues to rise at around 3.1% a year. However, the legislators seem to be confused about what type of legislation they want ... or perhaps it is how much can they restrict and still get re-elected? 

Five states are determined to protect ALL their kids from the dangers of the excessive UV radiation that comes from tanning beds -- California, Vermont, Texas, Illinois, and Nevada. [Update: As of 2017, this number has grown to 15 states.] Oregon also has an under 18 ban on tanning beds, but it includes a physician's permission exception. [Update: Washington state has same legislation as Oregon in 2017.] Since we know that there are no medical or health benefits from the use of tanning beds, which is not the same as phototherapy, this sends a very confusing message to an already very confused public. But that is a whole other blog! 

Parental consent tanning bills don't work

Much of the legislation being discussed this year includes a parental permission exclusion. And I am here to tell you from painful personal experience that parental consent laws simply do not work ... and they certainly don't prevent melanoma. 

It is, however, logical to think that parental consent bills should be appropriate. A parent should be able to decide and control what activities their children participate in. And until recently, as far as tanning bed use goes, parents have had that responsibility ... and they have failed terribly. 

Currently 28 million people use tanning beds every year [Update: In 2017 that number has risen to 30 million], and 2.3 million of those are teens -- all participating in risky behavior knowing what we know about the relationship between UV radiation and cancer. According to the Center for Disease Control, "A tan does NOT indicate good health. It is a response to injury." And that injury to your skin opens the door to a life of fear and pain.

If parents knew the facts about the dangers of indoor tanning, ZERO kids would be permitted to use them. And unfortunately, that is not the case. In fact, studies have shown that many teens get their start in tanning beds by going with their moms ... some sort of bizarre bonding ritual!



There are laws for minors regarding alcohol and tobacco that don't require or allow a parent to consent. Why should tanning bed use, exposing our children to cancer-causing radiation, be any different? Parents have so many parenting decisions to make that I seriously doubt that they would miss this one.

Even the permission forms that parents are asked to sign before their child can tan,

From skincancer.org

at least the ones I have seen, are problematic. Yes, they do alert parents to the risks to some extent ... but do they state that it could KILL your child?!

 

 

 

 

Indoor tanning industry's web of lies and myths

I'm sure parents hear the warnings from the medical community and melanoma advocates like me, but they also have the indoor tanning industry pulling them in the opposite direction, weaving a web of lies and myths. 

In Texas there are laws against the tanning salons being able to advertise any benefits to tanning bed use other than cosmetic ... but what they tell potential customers is probably a different story. It certainly was years ago when I was faced with the decision-making process of deciding what was right for my daughter Jaime.

Here is some of my testimony before the Texas House and Senate health committees:

          "FACT: Parental consent laws do not work.

Jaime was our princess, our precious baby girl. As a teenager, Jaime was bubbly, outgoing, and popular and wanted to do what all her friends were doing … use tanning beds. I was a busy working mom with 3 teenagers, having a difficult time keeping track of all their activities. It wasn’t until the day Jaime came home from school with a sunburn that I realized she was using tanning beds. Texas had a parental consent law in place at the time, and Jaime had been signing my name to the forms. But that’s not all.

FACT: The indoor tanning industry is misleading customers.

Not knowing whether these tanning beds were safe for her, I went to the tanning salon with her to ask questions. They gave me lots of information, but it was misinformation, which proved to be deadly. They assured me that the beds were safe … because the government won’t allow them if they weren’t. They also told me that with her pale skin, she needed to develop a base tan in the beds to protect her from the sun. There was never a mention of skin cancer … or any risks for that matter. So unfortunately, I bought into their slick marketing and gave them my money … and signed away my child’s life. And although that was 20 years ago, they are still holding on to their false claims."

Rights vs responsibility

The bottom line with parental permission exceptions in teen tan ban bills: A note from mom does not make tanning beds any less dangerous. If we want to protect the children of this country from unnecessary cancer, we need to change our thinking. Perhaps instead of being concerned with our parental rights, we need to thinking about our parental responsibilities. We need to realize that as parents, our role should be to demand that our lawmakers make public health decisions to protect our children based on sound research and medical data -- and not for political reasons. The health and safety of our children should trump everything, including parental rights.


For more information on melanoma and/or on the status of state teen tanning bed restrictions, see www.aimatmelanoma.org


 Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
http://www.facebook.com/jaime.regen.rea (Remember Jaime)
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Fitness Centers & Tanning Beds Don't Mix

Last week CVS, the second largest drugstore chain in the US, announced that it would no longer be selling cigarettes or tobacco products as of October 2014. The CEO said, "The sale of tobacco products is inconsistent with our purpose – helping people on their path to better health." It was a bold move that will cost CVS $2 billion in annual revenue. However, lung cancer claims more lives each year than breast, colon, and prostate cancer combined, according to the Oncology Nursing Society. Cigarette smoking kills half a million Americans each year; another 16 million suffer from smoking-related conditions.
 
BUT WAIT ... A new study has shown that more skin cancer cases are caused by tanning beds than there are lung cancer cases caused by smoking. (See my Jan. 30 blog about this: http://melanoma-mama.blogspot.com/2014/01/what-is-it-going-to-take.html) So this definitely needs some additional thought. 

The World Health Organization lists tobacco as a Group 1 carcinogen (cancer-causing agent), along with arsenic, plutonium, and ... oh, right, tanning beds that zap us with excessive UV radiation for the sake of vanity! 

So what about all the health and fitness centers that also have the goal of promoting good health ... yet offer their membership unlimited use of cancer-causing tanning beds????

There are no statistics that I am aware of that show how many gyms or fitness centers offer tanning beds, because in most states, licenses to operate UV equipment are not required, but many, especially the large franchises, do ... too many. Health/fitness centers do not offer tanning beds for their health benefits (because, duh, there are none!); they offer them to make money.
 
Most fitness club members are health-conscious. They eat right, exercise, don't smoke ... and yet they then climb into a tanning bed when they are done with their fitness routine. Why? Because many people think that a healthy glow is part of a healthy look; because it is really convenient; and/or because they want that tanning "high."

People go to the gym to workout so they will look good; however, the UV exposure from those tanning beds will give them wrinkles, age spots, leathery skin ... and skin cancers or melanoma, the fatal form of skin cancer. Perhaps they cannot imagine that a health/fitness center selling health and fitness would also be selling cancer!

Skin cancer rates are continuing to climb, and yet these fitness centers are making the use of tanning beds more convenient than ever. According to the Journal of the National Cancer Institute, those who tan 1 or more times a month increase their risk of getting melanoma by 55%. And tanning bed use before age 35 increases the chances by 75%. 


A few additional problems with these tanning beds offered by fitness centers and gyms, aside from the obvious health issues, are

1. their cleanliness -- imagine all the people who worked out and then jumped into that bed, possibly naked, leaving behind all the sweat, germs, and even fecal material just for you!
2. their lack of regulation and maintenance -- who knows when the lamps were changed last or the bed calibrated, and we're talking radiation here!
3. unlimited availability -- which means more time for the UV radiation to damage more DNA 
4. lack of enforcement of eye protection -- which can damage eyes and cause cataracts and ocular melanoma. UV rays can penetrate through the eyelids, so simply closing your eyes in a tanning bed doesn't provide the necessary protection.
5. availability to minors -- even if state law restricts teens from using tanning beds in tanning salons

Using a tanning bed offers no benefits ... but it could offer a life-time of suffering ... for you or for the loved ones you leave behind. My daughter Jaime would be the first to tell you, if tanning had not killed her, that no tan is worth dying for!!

"Being fit equates with being tan" ... it's a confusing and dangerous message to send, and that is the message that health/fitness centers are sending when they offer tanning beds at their facilities. If the purpose of a fitness center is to promote good health ... then it makes no sense at all to offer indoor UV tanning. CVS was claiming to care about the health of their customers while selling a carcinogen (tobacco products) but has now taken the brave position to no longer sell those products. So then, why can't health/fitness centers step forward to protect the health of their customers instead of selling cancer through their tanning beds????


 Melanoma Mama (Jaime's mom, Donna)

http://www.facebook.com/donna.h.regen
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With this ring ...

February 2nd -- Today my only daughter Jaime should be celebrating her wedding anniversary with the love of her life ... but melanoma had other plans. It stole her dreams, her hopes, her happiness, her future. It is a horrific and evil disease that was an uninvited guest at her wedding, and I HATE that it shared in her most special day!

Jaime was a very organized young woman (not taking after her mom, for sure!), and for 2 years Jaime had meticulously planned out every detail of her wedding. It was to be perfect ... a fairy tale wedding befitting a princess. It started with the date ... 2/2/02. Jaime was into numbers, and this was the date she claimed for her most special day. 

Everything was going according to plan ... except that she left the groom unsupervised at his last haircut before the wedding. When he appeared sporting his much-too-short haircut (and if I recall the story correctly, to make matters worse the hair stylist who did the deed was an ex-girlfriend) ... well, to say Jaime was furious would be an understatement, and the marital bliss almost ended before it had even begun! But love won out and the wedding was back on track.

A couple days before the wedding, she was trying on her wedding gown. I was buttoning her up in the back while admiring her beauty in that gown ... and my heart skipped a beat. I felt a lump in the middle of her back, like a pea under the skin. I didn't want to alarm her, but as calmly as I could, I told her about my discovery and suggested that when she returned from her honeymoon in a couple weeks, she have her oncologist check it out. It was almost time for her annual visit with her surgical oncologist at Dallas Baylor anyway.

You see, Jaime, who had regrettably visited tanning beds frequently in high school and college, had been diagnosed 4 years earlier, when she was 20 years old, with Stage IIA melanoma, an often fatal form of skin cancer. However, it had been found fairly early, and after the initial surgery to remove it from her upper back, it had not reared its ugly head again. Her prognosis was great. Matter of fact, her doctor had declared her "cured" at her 3-year visit ... but that was wishful thinking because melanoma is never cured.

Well, the wedding went off perfectly. Jaime was glowing as she became Mrs. Jaime Regen Rea, and as far as I know, everyone had a great time. But no one else knew what I did ... that it was not only the radiant bride and her daddy walking down that aisle. Melanoma was tagging along as well ... as unwelcome as it was.

Now I have to admit it ... I am a crier. I cry at funerals, weddings, bar mitzvahs, births, graduations, award ceremonies ... and I have even been known to cry when my son scored a goal at a soccer game. Any time my heart is bursting with emotion (either good or bad), my eyes become waterfalls! Jaime's wedding was no exception. 

My tears were contagious, and soon tissue boxes were circulating among the bridesmaids. Even the groom had watering eyes. Theirs were crying tears of joy ... but mine had more meaning than they or anyone could possibly know. My tears were tears of love and pride, and they were falling because I was grateful to be sharing my daughter's happiest of days ... but they were also streaming down my face because I knew that her cancer was back. I had no idea the extent of its return ... but I knew the Black Beast had returned and I was very, very scared!

Turns out, my fears were confirmed, and all those bittersweet tears were just the first of so many more to come ...


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)
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