Saturday, May 31, 2014

What Makes a Cancer Survivor?

As we approach National Cancer Survivors Day, I am thinking about what defines a cancer survivor. 


Is a cancer survivor one of the lucky ones who has been determined to be cancer free? Many know the exact day that they attained that status and celebrate it every year. They have every reason to be proud because their cancer-free status did not come easily.

Or does the title of cancer survivor include warriors still in search of hearing they are free of cancer, fighting furiously to hear those beautiful words ... No Evidence of Disease ... and for the opportunity to live life without all that cancer brings?

Or is it the newly diagnosed cancer patient who is overwhelmed with all the medical jargon and the journey that awaits them?



I was first introduced to Cancer Survivors Day around 2005. I had taken my daughter Jaime, a 27-year-old melanoma patient, to Baylor Hospital Sammons Cancer Center in Dallas for an appointment. Baylor's lobby was filled with tables overflowing with cookies and punch and flowers celebrating cancer survivors, and I was excited that they had done this to make my little cancer fighter feel special (along with all other cancer survivors, of course!). Jaime was a cancer survivor for 9 years, and we cherished every single one of them.

And does the honor of being a cancer survivor extend to those of us who have never had cancer but were caregivers and advocates to someone very special to us who did? Although cancer claimed our loved ones' lives and our hopes and dreams, we remained behind ... we survived. 

I have told the story before of attending my first melanoma walk a few months after Jaime died, and at the registration table I was asked if I was a melanoma survivor (because they had special t-shirts for the survivors). I didn't even stop to think before I answered "yes." Jaime had died from melanoma and had taken most of me with her ... but the small part of me that was at that walk had survived. In my mind, I was a melanoma survivor!



No matter what definition you use for "cancer survivor," I salute you all. Every one of you have earned the title! And one way to celebrate is to change your profile photo to honor yourself or someone you love who is or has been a cancer survivor by using the OHSU Knight Cancer Institute's Facebook app: https://apps.facebook.com/onedown/?utm_content=Knight+Cancer+Challenge&utm_campaign=Facebook%3A+OHSU+Knight+Cancer+Institute&utm_source=Facebook&utm_term=&utm_medium=Facebook


I do hope that all cancer survivors will take a minute on National Cancer Survivors Day (or any day for that matter) to thank their medical teams for fighting by their side along the way to becoming a survivor. 

I further hope that this year and every year going forward, we will see more and more survivors until there is a cure for cancer. Isn't it about time? 

Please also see my blog "Purple, Pink, or Black: It All Sucks!"


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)



Monday, May 26, 2014

Focus on Remembering

Memorial Day is a national reminder to set aside time to salute our heroes ... the ones who have fought for our freedom. We remember; we reflect; we honor and thank them. It's also a special holiday weekend for making lots of wonderful memories and welcoming in Summer ... and practicing sun safety. No one will get sunburned, right? (Shame on you, if you do! You need to go back and read my blogs about the dangers of tanning ... and yes, there will be a test!) But with all the talk about "remembering" and "heroes" and "brave young men and women who died," I can't help but think of those we have lost to melanoma and other cancers ... and of course, my Jaime.


I don't mean to diminish the meaning of Memorial Day, and we should all be grateful to those men and women who served our country and even made the ultimate sacrifice so that the rest of us could be free. To expand on that, we have other heroes in our lives ... policemen, firemen, doctors, nurses, teachers, etc ... and we should also remember and thank them for all they do to keep us safe and healthy and educated.

And then we have our own special "heroes" who bravely fought a disease like cancer ... and those warriors who continue to fight. They are heroes not simply because they have or had cancer or a particular disease or disorder; they are heroes because of the way they have dealt with it. They have taught us courage and showed us strength. They have fought hard not only for their own lives, but many have participated in clinical trials or taken experimental drugs to pave the way for better treatments for future patients with that particular disease. We also have patients who have donated tissue for research ... like to the AIM at Melanoma/Skin of Steel Melanoma Tissue Bank. (I'll tell you more about that in a later blog) Researchers and doctors have learned from them ... these heroes have helped save lives even if not their own.

My daughter Jaime is my special hero. She fought melanoma for her entire adult life (20-29 years old) and never complained. She was brave beyond what I ever could have been, and that beautiful smile never left her face. From her diagnosis to her last breath, Jaime showed determination and a positive spirit. She confronted cancer head-on but didn't allow it to stop her from truly living. One of her doctors said she reminded him of a pansy during our Texas winter. Even though it gets covered by snow or encased in ice, it continues to live and thrive, spreading joy and beauty.

Jaime was a "lab rat" in several clinical trials; none of which benefited her, unfortunately. But in the 7 years since Jaime's death, five new treatment drugs have been approved for melanoma, and what was learned from her melanoma case might have helped in some way. At least they learned from Jaime and others what treatments are not successful and can be abandoned! (The importance of patient participation in clinical trials is a topic that seriously deserves it own blog so that will come at a later time.)

So as my heart goes out to the parents of all servicemen and women who made their final trip home in flag-covered caskets, I also remember, as I do every minute of every hour of every day, my own little soldier who fought one hell of a battle with an evil enemy but didn't make it out alive. I am a rememberer ...








I miss you, Sweetie Pea! ... and you will never be forgotten.

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)


Friday, May 9, 2014

Pain of Mother's Day

Mother's Day is not on my list of top 10 favorite holidays. Matter of fact, I detest it! Now don't get me wrong. I don't hate mothers ... 'cause I have one (although she is 94 and usually thinks I am her sister) and I am one, three times over. None of us escaped having a mother; many of us are mothers or hope to be someday. But the sad truth is that many have lost mothers, and many mothers have lost children, and many women are trying unsuccessfully to become mothers ... and Mother's Day is huge reminder to us of all that pain and emptiness.

I don't understand why there should be one designated day when everyone is told to honor and adore your mother. Why not give her special attention every day? Why not visit or call her, show your appreciation, tell her how much she means to you, shower her with love and affection without being prompted by retailers and florists? Mother's Day is the 4th biggest retail holiday in this country. I prefer to buy gifts for people, including my mom, when I see something that makes me think of them and not when I am told I must. Perhaps that is just the rebel in me.

If your mom is no longer living, I am sure it is difficult to celebrate this day. It is a huge reminder that she is no longer a living part of your life. Your visit to the cemetery isn't the same as giving her a hug or hearing her voice or seeing the delight in her eyes at the sight of you. Mother's Day reminds you of the unconditional love that is missing from your life. And if you are a mother missing your mother, the day must be painfully complex.

Many have moms who are living with dementia or Alzheimer's disease, like mine, who no longer recognize their children. It is bittersweet. She is still alive but no longer the same mom you have known all your life. Mother's Day is difficult when your mother doesn't remember your name or recall that you are her child.

If you are a woman unable to have children, Mother's Day must be hurtful. You want so badly to have the title Mother. You dream of little arms wrapped around your neck and hearing a little voice call you Mommy. What's to celebrate for you with your breaking heart? It's just a reminder of what you yearn for but are being denied.

If you have lost one of your babies (however old, they are always your babies), then I do understand the pain you will be feeling. You feel it every single minute of every day, but on Mother's Day the pain is sharper and your loss is more intense. I lost my daughter Jaime to melanoma when she was 29. I was her mother; I was supposed to protect her ... and I failed. It may sound silly that I think I should have been able to keep the cancer from destroying her little body and taking her life, but I was her mom and keeping her from harm was my job. I failed ... and Mother's Day is a reminder of that.

If you still have other living children, the day is a major predicament. You have trouble celebrating the day because your heart is torn. A valuable piece of making that day special is missing ... one of your children. But your other children have a mother and want to celebrate with her ... because, after all, all the commercials on TV remind them that that is what they are supposed to do. So for your surviving children, you put on your happy mask and somehow get through the day even though you are crying silently on the inside. 

So although the retailers look forward to Mother's Day, I will just be glad when it is over. And I know I am not alone in those feelings.  It makes me so sad that this day causes so much pain to so many ... but please know that I am thinking of each of you this Mother's Day.

Tuesday, May 6, 2014

Promises Made Are Not Necessarily Promises Kept

Earlier this spring I wrote a blog about the positive impact of social media (http://melanoma-mama.blogspot.com/2014/03/social-media-black-ribbon.html). It was about the American Academy of Dermatology's (AAD) attempts to change the color for melanoma awareness from black to orange in 2013. The outpouring from an angry melanoma community through Facebook and Twitter made them rethink their "orange" party campaign. It was ugly, with dermatologists and their staffs caught in the middle (see photo).


This was being promoted by AAD in 2013
This past spring, as my blog described, a small group from the melanoma community was beckoned to a phone conference (more specifically, a one-way presentation by the AAD). We were told what we so desperately wanted to hear. The AAD made promises about encouraging black (which we take as seriously as the breast cancer community takes their pink!) and supporting our efforts to create awareness by retweeting and sharing our messages. We came away from that "meeting" feeling like we had been heard ... that social media had worked to help us save lives. With all of us working together, we could concentrate on creating awareness instead of creating drama.

After that, there were follow-up emails and phone conversations with our ideas and suggestions ... which as it turns out was a total waste of everyone's time. We were being played. It seems that we were being told just enough to keep us calm and not stir the waters.

And now for an update: Fast forward to May 5, 2014, Melanoma Monday. The melanoma community received the rude awakening that for the AAD, there is no "us." They did not follow through with their promises (yes, you can read that as they lied to us). It is obvious that they are typical big business and only care about the $$$. The melanoma community, on the other hand, is forced to deal with the pain, fear, and destruction of melanoma every hour of every day and wants to create awareness so others do not have to suffer. So we obviously have different agendas.

We complain about the indoor tanning industry and their deceptions, but it seems the AAD is learning from them. I am offended that the AAD is being so disrespectful and insensitive to the melanoma community. I am dumbfounded that they are sending me emails asking me to support THEIR efforts for Melanoma Awareness Month, which they call Skin Cancer Awareness Month, when they seem oblivious to our requests that BLACK be used for melanoma. Now don't get me wrong ... I have nothing against skin cancer or any other cancer, but Melanoma Monday isn't about any of those other cancers. And promoting black for that one day or for even a month shouldn't have taken any effort on their part.

All in all, I am just plain angry! I come from a generation when a person's word was everything. I don't understand or appreciate being lied to or manipulated. And I feel used. I wrote that blog that gave everyone hope for a great new-and-improved melanoma awareness day and month ... and now I am forced to write this one to say "never mind."

So maybe David can't slay Goliath but perhaps he (or me) can just ignore him and do his own thing!



Sunday, May 4, 2014

Every Day Should Be Melanoma Awareness Day!

The first Monday in May is Melanoma Monday. It is a designated day to create melanoma awareness and to honor those fighting this evil disease and remember those angels whose fight is over. It is a day to wear black, the color for melanoma awareness (and don't let anyone tell you it is a different color, like orange, because they are wrong!). But melanoma awareness doesn't need to just be -- and shouldn't be -- confined to just one day.


As you probably know, my daughter Jaime was diagnosed with melanoma when she was 20 years old. We had never heard of it before the doctor said those three words that started our nightmare ... "Jaime has melanoma." It took her life ... and along with it, most of mine ... 9 years later. Since her death, I have been obsessed with trying to keep other families from the pain that ours has been through. So please bear with me ... I'm going to throw a lot of facts at you, but these facts could save your life or that of someone special to you.

Your best chance of beating melanoma is not getting it in the first place


As horrific as melanoma is, it can, in many cases, be prevented.
  • Be sun smart. 

  • Avoid excessive sun exposure, especially between the hours of 10am - 2pm. Remember that water, snow, and sand reflect damaging UV rays to increase your chances of sunburn.

  • Apply sunscreen with a broad-spectrum (with both UVA and UVB protection) sun-protective factor (SPF) of 15 or higher. Apply 1 oz (a shotglass full) 30 minutes before going out. Reapply every 2 hours, even if it's cloudy (UV rays travel through clouds), or after swimming or sweating.

  • Keep newborns out of the sun. When they are older than 6 months, you can use sunscreen on them. 

  • Seek shade when your shadow is shorter than you are.

  • Slip! Slop! Slap! Wrap!: Slip on clothing, slop on sunscreen, slap on a wide-brimmed hat, and wrap on sunglasses.

  • Examine your skin often and take note of any changing or new moles.

  • NEVER, never, never use indoor tanning beds or sunlamps. According to the World Health Organization, ultraviolet radiation is a proven human carcinogen. First exposure to tanning beds before age 35 increases melanoma risk by 75%. Of the 28 million people using tanning beds in US each year, 2.3 million are teens.

     

    Early detection could save your life

     

    And if not prevented, it can be caught early, which means it is easier to treat and hopefully stop in its tracks. Know the ABCDEs of melanoma. Unlike all other cancers, melanoma is visible on the skin, making it easier to detect in the early stages. Warning signs of melanoma include changes in size, shape, or color of a mole or appearance of a new growth on the skin. Any mole that itches or bleeds warrants a trip to your physician ASAP. However also be aware that these are only guidelines and melanoma can appear entirely different from the ABCDEs, particularly pediatric melanoma. See your doctor with any skin lesion that concerns you. Monthly skin self-exams and annual skin checks by your doctor are important as well.




       

       

       

       Melanoma facts you should know

      • Melanoma is the most deadly type of cancer of the skin; it's not "JUST" skin cancer.

      • Melanoma is the 5th most common type of new cancer diagnosis in men and the 7th most common in women.

      • Every hour someone in the US dies from melanoma. Jaime’s hour was 1pm, Friday, March 16, 2007. 

      • Although the incidence of most cancers is declining, melanoma diagnoses continue to rise significantly, at a rate faster than that of any of the 7 most common cancers.

      • The incidence rate for invasive melanoma is highest in Caucasians, who are almost 30 times more likely to develop melanoma than African Americans. However, melanoma can affect anyone, no matter their age, sex, race, religion, or political beliefs. It is an equal opportunity cancer! Although melanoma is uncommon in people of color, when it is diagnosed it is frequently fatal for these populations because the melanoma is more advanced at time of diagnosis.

      • Melanoma is most common in men older than 50, more common than colon, prostate, and lung cancer. Men aged 65 and older are more than twice as likely to develop melanoma as women in the same age group.

      • Women younger than 39 have a higher probability of developing melanoma than any other cancer except breast cancer and are twice as likely to develop melanoma as men.

      • Melanoma is now the most common cancer in the 25-29 age group and second most common for 15-29 year olds.

      • Melanoma accounts for about 3% of all pediatric cancers; 90% of pediatric melanoma cases occur in girls 10-19.

      • 76,100 new cases of invasive melanoma and 63,770 new cases of non-invasive (in situ) melanoma will be diagnosed in the United States in 2014; about 200,000 new cases are diagnosed worldwide each year. According to the World Health Organization Report, about 46,000 melanoma-related deaths occur worldwide each year; 9,710 US deaths are expected from melanoma in 2014.

      • 1 in 52 men and women will be diagnosed with melanoma of the skin during their lifetime; 1 in 5 will develop skin cancer.

      • Melanoma can develop on any skin surface, even where “the sun don't shine” and in the eyes, nails, and soles of the feet.

      • Excessive exposure to UV radiation from the sun or tanning beds increases your risk for melanoma as well as basal cell carcinoma and squamous cell carcinoma. About 86% of melanomas can be attributed to exposure to ultraviolet (UV) radiation from the sun.

      • The survival rate for patients whose melanoma is detected early is about 99%; the survival falls to 15% for those with advanced disease.

      • According to the National Cancer Institute, the estimated total direct cost associated with the treatment of melanoma in 2010 was $2.36 billion in the United States

        Risk factors you need to think about

        • Just one severe, blistering sunburn can double a person's chance of developing melanoma later in life.
        • Workplace exposure to coal tar, pitch, creosote, arsenic compounds, or radium increases your risk.
        • Exposure to tanning beds before age 35 increases a person's risk of developing melanoma by 75%.

        • People with fair skin that freckles easily, blond or red hair, and blue or green eyes are at greater risk for all three types of skin cancer.

        • Anyone who has more than 50 moles or large or unusual moles is at greater risk for melanoma.

        • Anyone who has a blood relative who has had a history of melanoma is at  increased risk. 
        • Previous melanoma or the more common types of skin cancers as well as cancers like breast or thyroid can increase your risk.

        Don't be blind-sided by melanoma like our family was. Become educated and prevent it from entering your lives!

        For more comprehensive information on melanoma, see www.AIMatMelanoma.org


        Melanoma Mama (Jaime's mom, Donna)

          @melanoma_mama (Twitter)

        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)