Jacqueline’s Story: When It Comes to Melanoma – Expect the Unexpected


Is there a better time of life than 22?  All the possibilities of life are before us, ready to be explored.  In 2003, Jacqueline Smith was just 22, fresh out of college and ready to take on the world when she received devastating news; she had Stage III melanoma.  What? How could that be? She was young! She didn’t tan!  She is a woman of color.  How could she have melanoma?

Now, all these years later, Jacqueline shares her story in the hope it raises awareness that everyone is at risk for melanoma no matter their age, gender or race.  As a survivor with a career in patient advocacy and research,  Jacqueline offers this glimpse of what life is like for a young melanoma patient. 

“Sickness has always surrounded me and on November 29, 2006, I learned it had finally engulfed me.  At age 28, during the first semester of my doctoral program in sociology at Syracuse University, I learned I had recurrence of stage III melanoma.  I was devastated. The disease I thought I had beat at age 23 was rearing its ugly head again. Furthermore, the lump I had detected in my bikini line almost a year and a half earlier was not the inflamed lymph node that my gynecologist assured me it was and it was not the result of some minor infection that my primary care provider’s assistant diagnosed.  It was a lymph node filled with cancer. My gynecologist advised, “it is nothing but an inflamed lymph node. If it doesn’t bother you, don’t bother it”.  But it did bother me.  It was not painful but it was unsightly. It was firm and slow growing. Therefore, I wanted this lump removed.  The surgeon performed a needle biopsy. The result? Melanoma.

Again, I was struck with the same question: “how could this be?” I was not a fair skinned, middle-aged Caucasian woman. I was the complete opposite.  I was never a sun-worshipper and have never even entered a tanning salon. I spent all those years performing breast self-exams, watching my salt intake and praying to be saved from diabetes but never did I think I would become a skin cancer patient.  

I sought opinions from several doctors and specialists.  On December 21, 2006, I was told it would be a miracle if I survived another five years.  Needless to say, I spent that holiday season drowning in self-pity and worry mixed with anger and resentment. Though none of us know when we will reach the end, most live everyday with the promise and hope for a new day. However, receiving a cancer diagnosis quickly forces one to face their mortality.

On March 29, 2007, I had a total right groin lymphadenectomy.  I enrolled in the pegylated interferon clinical trial (a form of immunotherapy in which I had to self-administer weekly injections) and subsequently completed 3 months of radiation treatment.  Today, I am thankful to say I am cancer free.

Prior to my diagnosis, I never thought melanoma was a “serious” cancer.  When most people hear of my diagnosis, they assume I simply had a cancerous mole removed.  Few are aware of effects advanced staged melanoma.  I had 16 lymph nodes removed.  I have an eight-inch surgical scar on my right groin and I have a larger radiation scar, which creates a frame around the surgical scar. I have dots permanently tattooed on my right groin marking the radiation site.  I have two permanent scars on my abdomen marking the sight in which I had to administer my interferon injections.  As a result of both surgery and radiation, I suffer from lymphedema in right leg. To keep the lymphedema from progressing, I must wear a compression stocking on my right leg during the day and sleep in a bulky compression brace nightly.  These are things I will have to do for the rest of my life.  I also suffer from cognitive changes resulting from interferon therapy. Advanced melanoma is anything but minor. Fortunately, you can mitigate your risk of developing melanoma. Please, monitor your sub-exposure, diligently wear sunscreen and make sure to see your physician for an annual skin cancer exam.

Jacqueline currently serves in Patient Advocacy and State Government Affairs at Vertex Pharmaceuticals. She is a Doctoral Candidate with over a decade of experience in research, advocacy and cancer survivorship. She sits on a number of Boards including the Claire Marie Foundation and the Melanoma Research Foundation.

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The Damaging Affect of Blue Light on Your Skin

Do you think because you’re stuck self-isolating indoors, awaiting the start of your latest Zoom conference during COVID 19 you can skip the sunscreen?  Well, think again! 

Your skin is still exposed to all forms of visible light which includes not only the damaging UV rays of the sun streaming through your windows but especially to the blue light spectrum which emits energy (irradiance) thought to be cumulative and damaging –  ranging from halogen light bulbs, computer screens, televisions, smart phones, to lamps used in nail salons.

Dermatologist Dr. Eva Simmons O’Brien, M.D., F.A.A.D., Co-Founder of the Claire Marie Foundation Medical Advisory, recommends you wear sunscreen daily indoors as well as outdoors to ensure protection of your skin against the entire spectrum of light. “Visible light can induce pigment changes and may have an adverse cumulative effect on the overall health of your skin.” Dr. Simmons O’Brien says.  This can be of extreme importance for people of color and those who are at risk for  melasma; a condition in which the pigmentation of the skin darkens or becomes discolored. melasma is thought to be caused by UV damage, genetic predisposition, and hormone changes. Although it can affect anyone, melasma is more common in women – especially pregnant women and those who are taking contraceptives or hormone replacement therapy. 

Dr. Simmons O’Brien also advises to always make certain your sunscreens contain physical blockers such as titanium dioxide and/or zinc oxide in their formulations. The micronized zinc preparations won’t leave you looking pasty or chalky!  Just add it into your daily routine so you can be skin safe while you #StaySafe

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The Ignored Risk: People of Color Do Get Melanoma

If you have skin – you are at risk for melanoma. That’s it. Plain and simple. EVERYONE – no matter age, gender or race can develop melanoma. It does not discriminate and it isn’t always about the sun. Melanoma can occur due to genetics and hormonal changes related to puberty and pregnancy – especially among adolescents and young adults where diagnosis is at “epidemic proportions”. 

Many people of color live under the false assumption that they cannot develop melanoma because higher levels of melanin in their skin offer immunity to damaging rays of the sun. Yes, there is less risk than those with  fair skin, but when melanoma does occur, it is usually late stage with a much worse prognosis. Consider this: on the average – only 65% of patients of color diagnosed with melanoma survive five years compared to 91% of white patients. Why? A clear lack of awareness, education and preventive care among patients and the medical profession. 

Acral Lentiginous Melanoma or ALM is is the most common form of melanoma in people with darker skin and those of Asian descent although it can develop in all skin colors. It is found on the sole of the foot, the palm of the hand or under the nails. It can develop from an existing mole or pop out of nowhere! Although the actual cause is not clear, ALM appears more related to genetics than sun exposure. It is the form of melanoma that famously claimed the life of reggae icon Bob Marley.

Death rates from ALM are higher than other forms of melanoma mostly because it is often overlooked due to a lack of awareness and education among the patients and physicians. So what can you do? Begin by taking care of yourself!

  • Wear SPF 30 or 50 sunscreen every dayno matter your skin color.  It’s a challenge to find  a sunscreen that blends well with darker skin. Sunscreens containing titanium dioxide and/or zinc oxide are the answer. Look for formulas that are micronized zinc preparations. They do especially well on darker skin tones by offering protection without a chalky look!
  • Get screened annually by a certified dermatologist! Make sure the examination includes an evaluation of your feet, hands and nails. Keep in mind general practitioners, internists, or pediatricians are not trained in dermatology and can overlook any suspicious moles. You need a dermatologist who utilizes dermatscopy. 
  • Wear UPF 50 clothing during extended time in the sun. There are so many wonderful sports and fashion looks out there; Sun50, Coolibar, Athleta, Columbia Sports, the list goes on and on. Think of it as shopping to stay healthy!
  • Check yourself out! Evaluate your own skin monthly and be sure to call a dermatologist if you see any unusual changes. Listen to the voice in your head. Your instincts usually are right!

Take charge of your skin and spread the word! Prevention is the cure when it comes to melanoma. Stay well. Stay safe. #livelifelikeclaire

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“Consider Me Well Prepared” – The Courage Behind Claire’s Smile

Four years ago today, our daughter Claire Wagonhurst lost her life  to melanoma. She was just 17, a senior in high school, a young woman who had just excitedly learned she had been accepted to study art and design at two universities – refusing to decide until she heard from the third.  Although her mobility and sight  were fading – either due to disease or treatments – she  refused to let melanoma define nor limit her passion for life.  As we mark what her friends call her “angelversary”, we share with you Claire’s college application essay.  It offers a glimpse into the journey Claire endured in her three-year fight against melanoma and the deep pool of courage and strength from which she drew to live a joyful and inspiring life.  May it inspire you as face your own challenges. May it help you understand why at the Claire Marie Foundation, we fight so hard to make sure no other family faces this loss. May we all  #livelifelikeclaire

Consider Me Well Prepared    Claire Wagonhurst   Notre Dame Preparatory Class of 2015

The incessant beeping of the empty IV awakened me. Not that I slept much over the last few days with the raging headaches and the whispering of doctors and nurses as they scurried in and out of the sterile hospital room tending to my needs. This could not be happening again! The melanoma was finally going away. Could I not get a break? My senior summer had just begun and I had plans; a trip to Spain, job at the pool, concerts with my friends and college tours! I didn’t have any more time to lose to cancer! I wanted so badly to scream and cry but my head hurt too much for such human indulgences. The emotions could come later. I tucked them away in my racing heart and coached myself through it once more. “Come on Claire, you can get through this again. Dig deep, find the strength, hang on. “

It’s just one more storm to drive through.

That had become my mantra when the winds first started brewing my Freshman year. I bounded in our front door one October afternoon, exhausted from cross country practice to the bad news. It was written in my mother’s pained eyes and on my dad’s strong face. A mole on my ankle went nuts compliment of hormonal changes in puberty. My friends got zits. I got melanoma.

Just keep driving. The blinding and pounding rain will stop, the winds will ease.

Cancer would not define me. I didn’t want to become one of “those kids” who wear their disease like a cloak for all to see, evading all traditional teenaged experiences to hide in illness. Nope, this was merely a bump in my road; a detour perhaps, but nothing that would keep me from my goals. Following two surgeries and a year of treatment, we were celebrating! The melanoma was gone! I was a success story! Somehow through it all, I managed to stay on track with my academics and teenage pursuits; sports, friends, dances, community service and design studies. However, just as I began to relax and embrace the sunshine of my teenaged existence, the cumulus of change swirled in the distance. The confetti was barely swept away and I was still sporting my Sweet 16 Birthday Crown when I noticed my leg was swollen. Cue the winds. Brace for the rain. It was going to be another bumpy ride.

It’s only a storm. Just keep your hands on the wheel and eyes on the road. You can get through this.

In all, I weathered two more melanoma recurrences that year including surgery and multiple hospitalizations for treatment. I was rewarded with more scars and a lovely six month reprieve in which I soaked up the sunshine of partial remission. Little did I know in June, the storms would return.

Breathe deeply. Keep moving forward. You will feel the sunshine again.

This summer’s surge was the mother of all melanoma storms. It’s harshness lingers still, but the rays of full recovery are burning brightly. My success is deemed “miraculous” and thanks to a newly approved drug it should be the last melanoma storm I face. However, it certainly won’t be the last hardship I face in my life. Consider me well prepared.

Melanoma has taken its toll on my life; most notably stealing my innocence and the frivolity of youth. But as with all things in life there is a great gift that comes wrapped in pain if you look deep enough. I have the gift of family, friends and faith. I am proof that life is not fair. It’s best just to accept that fact. Most importantly, I know I have the strength, fortitude, humor and commitment to get through any challenge or storm that may blow my way. Although I must say a little more sunshine would be greatly appreciated.

Claire Marie Wagonhurst


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