Pale Girl Speaks

What is your story?

You’ve heard mine, now I’d love to hear yours!

Ideas to get you started…

• How did you/a loved one discover you/they had melanoma?
• How did friends and family deal with the diagnosis?
• Do you live your life differently?  How?
• Message to others?
• Wishes?
• Regrets?

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Your Stories

Lauren’s Story

When I was 17 my life changed. I found out I had Stage 2 melanoma.

I used to try and tan all the time not realizing I’m a pale girl with freckles, and laying out in the sun for hours is probably not the best idea. I then noticed a small bump on my upper left shoulder, and thought nothing of it because I was a teenager who knew nothing about melanoma or skin cancer in general.  So it got bigger a lot faster, to the point I could see the lump through my shirt. My mom saw it and made a appointment with my doctor who removed it as soon as she saw it.

It only took a week to get a phone call that I had cancer. I’ll never forget coming home from school with my whole family sitting on the couch waiting for me to get home. It happend so fast after that. I went into surgery at UCLA hospital where they removed a huge part of my shoulder and some lymph nodes. My family was of course very worried about me and my friends as well. I’m 28 years old now, and still have surgeries to this day (had one 6 months ago).  But because of them I have been cancer free! It definatly has changed my life. I used to be very upset about all my scars, but I think now that I’m older I realize that I shouldnt be ashamed I should be proud because I am a Survivor! These scars are a reminder of how strong I am. Same with anyone going through the same thing I did. I regret not knowing the dangers of it when I was younger, but I wouldnt be who I am today without having that experience.

Now I bug everyone to always wear their sunscreen! =)

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Christine’s Story

Cancer, it’s a word I don’t think I’ll ever get used to saying.

 

Twenty-three, that’s how old I was when I got the dreaded phone call from my dermatologist. That, “Hi Christine, How are you? I’ve got good news and bad news.” Yeah, that call.  “The bad news, you have Melanoma. The good news, we caught it early.”

 

A small, irregular mole showed up on the backside of my right arm. My mom noticed it and insisted that I get it checked out. I was resistant; I thought ‘it’s okay.’  My dermatologist told me time and time again, “The sun is dangerous, wear sun block, don’t tan” but I always said, “It will never happen to me.”

 

I got the call June 21, 2012. I was driving back to Fayetteville, Arkansas after spending my days off at home, in Dallas, with my parents.  Fear, panic and about a million questions rushed over me.  The initial reports came in as a severely dysplastic mole. A month later, the Little Rock pathologists decided it was Melanoma, the deadliest form of skin cancer.

 

I started tanning when I was just 14-years-old now here I am 23 and basically forbidden from the sun.

 

July 6th I had a chunk cut out of my right arm, just to make sure they got all of the Melanoma. My incision was about 6 inches long and went all the way to the muscle. Now, I am left with the scar, a constant reminder.

 

I am two months cancer-free.

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A Mom’s Story

My mothers first battle with melanoma was in 2005.  She had a small spot on her neck, below her left ear. It was melanoma.  It was removed and the doctors gave her a clean bill of health.  Fast forward to 2010,  the melanoma was back, in the same spot, but larger and more aggressive.  Despite that, the doctors removed it, and once again gave her a clean bill of health, this was in May.  At the end of September, I received a call that my mom had been taken to the hospital for difficulty breathing.  I grabbed my two little girls, 2 and 4 at the time and headed up to see her.  By the time I got to the hospital the doctor was talking to my mom, they had run tests and the melanoma was back and had spread. It was in her lungs, liver, kidneys, and brain.  We were told she had two to four weeks left, she died two weeks later on Oct. 5, 2010.  She was 56 years old.

If its one thing I have taken from this, is that I will never let my children succumb to the peer pressure to be tan that I did and my mother did when she was young.  My mom often told me stories of when she was a teenager and how she would put baby oil on and lie out in the sun, this was in the 60′s-70′s, I guess they didn’t know any better.  I often went tanning as a teenager and never once thought anything of it.  Now, if I could go back, knowing what I do, I wouldn’t care how pale my skin was.  My two girls, who are fair skinned, freckled, blue eyed and red haired, know they never go outside without sun protection.  We lather on the sunscreen, wear our long sleeved rash guards and still enjoy ourselves.  I have even taken them with me to each and every skin check I have had, I want them to be comfortable with it, as one day they will need to go themselves.

Every once in a while my four year old will ask me why my mommy had to die. My simple answer to her is, she didn’t have to. If only she wouldn’t have cared that she was pale, if only years ago sun screen usage would have been encouraged, if only she would have known the damage it could cause, she would not have had to die.

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Josh’s Story

About a year ago, I thought I was going to lose my health insurance due to low hours at the restaurant where I work while I pursue my comedy and acting career.  I made all my doctor appointments to get a clean bill of health just in case I did lose my insurance.  I hadn’t been to my dermatologist for 4 years.  Before I went, I noticed a small mole on my chest, no bigger than any other beauty mark or mole I have all over my body, but this one had a bit of red in it, and it just looked a bit odd to me.  So, I said to myself I would ask my doctor about it. He took a biopsy of it and called me back and told me to come in right away because it came back as a melanoma.  I was very scared.  He told me to call my mom and anyone else who I wanted to come in and help support me during the operation they had to perform right away.  I taught an acting workshop in a public school in Jersey City and then drove straight to my doctor, where he performed the operation.  My mom and my brother came in with me and helped talk me through.  Being a comedian, my family always has laughter as a main ingredient for any situation, but the laughs were tough that day.  Although one funny thing was happening during my operation, It seemed like every nurse in the place heard about my nervousness, and came in to talk to me during the operation. It was a very small room, and everybody was packed in so tight it was like the stateroom scene in the Marx Brothers movie  ”A Night at the Opera”.  I was shaking like Don Knotts, I was so worried.  But the operation was a success, and I now have a big scar on my chest, but I am so very lucky.  My doctor said I found it very early, but if I had waited just 3 months more, I wouldn’t be writing this story now.  I couldn’t believe it.  I had no idea melanoma could kill that fast and silently.  I was scared and nervous for about a month, but then I started to get better, and I go to see my dermatologist every 3 months, and my oncologist every 4 and I haven’t had any more melanomas since. Sure, he takes a little bit of me here and there, but I’d rather be safe than sorry.

I’m 35 years old now and I plan to live to be at least one hundred.  I put on sunblock when I go outside, and if I plan on being out for long hikes or bike rides, I also wear a hat, sunglasses, and SPF clothing.  I still get nervous every once in a while, and when I do, I find some shade, and it subsides.  I met my girlfriend a few months after that and we are planing on getting married soon.  It was a very scary year, but also one that was filled with joy and happiness.  I am so very fortunate to have been a part of a little twist of fate that saved my life.  I wouldn’t have gone if I didn’t think I was losing my health insurance.  It was just on a whim that I made that appointment and just happened to see a little speck that could have killed me.  So, I have to make some minor living adjustments, like sunblock and clothing issues, but I am one of the lucky ones. When anyone asks, “Why are you wearing that hat?” or  ”Why are you putting on sunblock?”  I tell them my story.  Hopefully they will go see a dermatologist every year, it’s a good idea.  Then maybe they can avoid this very dangerous killer, and be as lucky and thankful as me.  I love this life and this world, and I’m so happy to be a part of it.

 

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Maxine’s Story

About 8 years ago on a pretty regular basis, I slithered into my leotard and tights and headed to an exercise class 3 mornings a week.  Somewhere between the beat of the pounding music and the racing of my heart I was tapped on the shoulder by a young woman who rather shyly said, “I hope you don’t mind, but are you aware that you have a dark spot on your back?” I responded by thanking her and telling her that though I was not aware of it, I did freckle and perhaps that’s what it was. She suggested I check it out.  I did.  I made an appointment with my dermatologist that week.  She biopsied the spot and told me to come back in 10 days.  I really didn’t give it another thought.  Ten days later I returned to her office and when she entered the examination room, the first thing she said to me was, “Well, you’re one lucky lady”.  ”Why, I asked”…..It was a melonoma, first stage, was her response.   She then proceeded to show me a chart following the path of a melonoma from stage one to stage four as it goes deeper and deeper into the bloodstream.  I was so fortunate. I need not tell you how thankful I am to a stranger who saved my life.  I immediately went out and bought her a gift, but clearly nothing I could give her would ever express the gratitude I feel.  I’ve lost track of her as I no longer go to that class,  I’m really sorry about that as I want to do more to say thank you.

 

I only hope my story can be of help to someone else.

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Courtney’s Story

My melanoma journey began when I was 32 years old. I am a stay-at-home mom of two young girls, ages 3 years and 5 years. I have been happily married for almost 9 years now. I was always out playing in the sun as a child and in high school being “tan” was the thing to be, so when my friends would use an indoor tanning bed, I could not afford it, so I would bake in the sun throughout the summers completely slathered in baby oil. I loved the sun and being tan. Shortly after high school, I attended college and began to use indoor tanning beds. I would sometimes go a few times a week. My older sister always remarked that I would look like an old, wrinkled saddle-bag when I got older, but I just laughed it off and swore “tanned fat was prettier than white fat!”

So many years later, married with a young daughter, I was laying out at my parent’s pool when my mom made a comment about a mole I had by my right hip. She told me I needed to get it checked out by a dermatologist and I promised I would, but as we all know, things get pushed aside. A few more years later and after I had another daughter, my mom reminded me, at the pool again, that I needed to get my mole checked out because it was bigger than all the other moles I had. You see, I have dark eyes and dark hair and medium skin tone so I just assumed since I already had a ton of freckles and moles, this one would be no different. Finally, after months of my mom prodding, I made the appointment with my dermatologist. It took a few months before I could even get in. I originally went in for acne I was experiencing as an adult, and upon the dermatologist asking me if I had anything else they would be interested in looking at, I asked them to look at my questionable mole. The doctor decided to go ahead and biopsy the entire mole which left me with three stitches. I left the office and called them 5 days later, I might add, while sitting in the sun outside my house watching my girls play in the yard. They told me that they would need me to come in the the office at my earliest convenience to get my results. I knew this could not have been good news. At the time, my husband was out of town for his business, so my mom went with me to my appointment to help me with any news they gave me. I still didn’t think it would be a big deal. The very next day, my mom and I got the news that the mole was confirmed melanoma and I needed to make an appointment to get chest x-rays and blood work done, along with an appointment with an oncologist. Even upon doing all this and talking with the doctor, I had no idea how bad this kind of cancer could be. I just figured it was skin cancer and they cut it off. Thankfully, my results from my blood work and chest x-rays came out clean, but I did have to go back to my dermatologist to have a minor surgery done and remove so much skin all around and deep into my leg where the mole was to make sure the melanoma had not spread any further. I went to a plastic surgeon upon leaving the dermatologist to have that hole closed up, leaving me with 20 stitches and incredible bruising along my right leg.

So far since all of this has happened, I have had clean body checks with my dermatologist, but I cannot help but be terrified of each one of my moles or any cough or headache I get. I have read so many stories of others that had melanoma return and with a vengeance, it seems. At this point, I just take one day at a time, wear my sunblock along with slathering my kids, and thank the Lord above for keeping me here this long. I pray nobody else with ever have to go through getting melanoma and love preaching about sun protection along with staying out of tanning beds.

Thank you for listening!

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Sherri’s Story

I am a red head with German, English, and Irish decent – so my skin is fair with freckles.  Eleven years ago I was pregnant with my first son and noticed I had these round patches of rough skin on my right leg.  I asked my ob about them and was told, don’t worry it is just your hormones working their way out of your body.  Okay, lots of hormones, but they never went away. 2 years later second son comes – extreme hormones and 2 small children. Every time I went to the doctors I would ask about the dry skin-spots and they would either say I don’t know or your fine.  When my second son was 3 1/2 I took him to the La Brea Tar Pits in Los Angeles and I remember the whole time he was holding my hand he kept running his fingers over the rough patch of skin on the back of my hand.  I asked again to the doctor….was told I don’t know…….maybe we will send you to the dermatologist – this was an HMO.  Finally, last year we changed health providers and, after a friends convincing, I made an appointment.  I thought I was going to be told I had psoriasis or something.  I came out of the doctors office with many spots of skin burned from cryotherapy and a prescription for topical chemo.  I never even knew there was such a thing!  I was diagnosed with solar keratosis, which left untreated, can turn  into squamous cell cancer and then travel to the lymph nodes.   The problem was that it wasn’t just a couple spots anymore, it was hundreds.  On my arms, hands,and legs mostly, and  a couple on my face.

Since June of 2011, I have had to do 3 rounds of 4 weeks of topical chemo.  Luckily, it is not as bad as the intravenous, but by the 4th week you are fatigued, nauseous, headaches, and look like you are a leper.  It was hard emotionally, because I had to cover my body from my family, because it would scare them the way my skin looked.  My friends would say, don’t worry people won’t notice, until you see them s!taring in horror at my arms.  The way topical chemo works….it kills the bad cells on the top layer and you look bad and then there is scarring and then the potential cancer skin cells are gone.  The bad part is when you have skin damage like that there are multiple layers that are already damaged and coming to the surface.  Right now I am looking at probably another 2 years of topical chemo 4 times a year.  I have too much life to live for my family to not try to fix this.  I am an outside person, I love the sun, the warmth, the effects on my moods and brain, but now I always have to be paranoid – which I guess is good.   The good part is I don’t actually have the word cancer in my diagnosis, but I always have to worry that  a trip to the doctor is going to say that.  I can’t cut off my skin to fix it,  but I am so thankful that they are finally making clothes for people with our predicaments.   I want you to hear my story so you can be more aware.  The biggest hitter is your body in the car and in the cooler months.  We don’t think about putting sunblock on our hands in the winter, but the sun is on them while you are driving, also your arms.  Remember to put sunblock on these areas also, and make sure you have a sunblock that says it has UVA protection of at least 30.

Good luck to everyone and hopefully you will never see my story again and I will live a full long life, just not tan.

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Rhonda’s Story

During the spring of 2009 I noticed that I wasn’t myself. I started to become very lethargic, oftentimes too exhausted to get out of bed. I went to many doctors, but none could diagnose my illness. Then during May of 2009 my daughter Ashley, graduated from Carnegie Mellon University in Pittsburgh. Although I was thankfully able to make the trip, at that point my health had deteriorated to the point that I was in a wheelchair. When I returned to LA, I was having terrible headaches so the doctor suggested I have an MRI. That’s when they discovered the brain tumor in my right temporal lobe. I was rushed to UCLA hospital and immediately admitted to the Neuro-ICU.

 

My tumor was successfully removed on May 26, 2009, by Dr. Linda Liau who I affectionately call “my doctor with hands of gold”. But this was just the beginning of my road to recovery. The tumor turned out to be malignant melanoma (cancer), and thus I was diagnosed with Stage 4 melanoma. The melanoma had metastasized to my brain, my arm and my lungs. The one on the arm was protruding so much that it looked like a baseball. Dr. Stephen O’day, an incredible oncologist at The Angeles Clinic, suggested I do a double blind clinical trial. I accepted and every month I took pills and prayed that I was not getting the placebo and that the trial drug would work.

 

At first there were no changes, but then suddenly a miracle occurred. The lump on my arm was slowly but surely shrinking!!! Scans later revealed that the tumor on the lung was shrinking too. After every doctor appointment my husband, Evan, sent out his email report to dozens of friends and family who then shared the news with others. Everyone was praying for me, and I felt so loved and supported. In all the emails, Evan told everyone to have positive thoughts, which evolved into his signature being “Evan Positive Finkel.” That eventually led to our family mantra being “Think Positive”, and the name of my web site, www.thinkpositive4all.com.

 

On January 19, 2010, my scans did not show any signs of tumors or the cancer. I have been celebrating ever since. But I know that others with brain tumors and melanoma have not been as fortunate, and that every day more people learn that they are similar afflicted. I want to do everything I can to help others and to raise money for research that will lead to more treatments, a cure and preventative medicine. This web site is one step in that direction.

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Allison’s Story

I grew up in Orange County. A southern Californian fair-skinned blue-eyed blonde, who spent countless hours and days bathing in the warm sun, desiring that golden tan skin. I spent many summer afternoons lounging at the beach or the pool with my girlfriends, when I wasn’t coaching swimming lessons or lifeguarding at the local college pool. I graduated from high school at Capo Valley. I kept sun bathing. I continued teaching private swim lessons- I never wore a hat. I never wore sunscreen like my dad had warned so many times. I always would burn, then burn again, eventually building up a base tan. This process took place every summer. I was accepted to Otis Design School in Los Angeles. I wanted to be a fashion designer.

In 1996, I had a beautiful baby girl and named her Madison Alexis. She became my everything. I was a single mom and it was just the two of us. I taught her how to swim and we spent many Summer days lounging around the pool or at the beach. One autumn day, I woke up and suddenly realized I had a mole on the inside of my left calf. I made an appointment with my family physician to have him look at the mole. I trusted him. He knew me well- he had known my history and could give me advice on what to do. An hour later, the appointment ended. He told me it was just a mole and wasn’t anything I needed to worry about. He suggested I have it burnt off, if it was really bothering me. He definitely did not seem concerned. Months would pass, which somehow turned into a year. The mole was still there, but this time, it had changed color and size and shape. I swore I thought I just kept cutting it while I was shaving. I thought it had just formed a scab. I would remind myself it was nothing. The doctor even said so. I kept covering it with band-aids…..until one day is started bleeding. I dropped off my little one at preschool early one day, kissed her goodbye, and drove to the emergency room. I heard them say over and over, “No, it sure doesn’t look like cancer.” I was feeling relieved. They told me they didn’t know for sure, but that they recommend I see a dermatologist. I had never seen a dermatologist before. I always had good skin. They handed me a piece of paper with the number of a dermatologist and told me to make an appointment as soon as possible. Luckily, they had an opening the very next Monday. I was in.

Madison and I drove to my appointment. The doctor entered the room and within 30 seconds of viewing the mole, he urgently asked me how long I had had it for. I explained to him that I was a super busy, single mom, was going to school, working full time and raising a daughter, etc…..”I don’t know”, I said. “A month. A few months. A year.” I had lost track of time. He was not happy. After he performed the biopsy he said he would call with lab results within the next 3-5 days. He was sending the mole out for testing. I wanted to cry.

On April 10, 2001, at the age of 27, I was diagnosed with Stage III melanoma. The disease had traveled to my lymph nodes and I had to have seven removed, along with a wide excision biopsy. After the wound healed, I was referred to an oncologist and underwent 30 days of interferon treatment. It was brutal. My family came in to help me with Madison. I became obsessed with Madison being exposed to the sun. I stayed out completely. We put on sun screen every moment we walked outside the door. I wanted her safe. I just wanted to live.

After four years, I stopped getting regular check ups and started living my life as a cancer survivor. My wound healed (there is still a gigantic hole there). My daughter was growing bigger. Hooray-I was still a mommy. I started my own clothing line and lived each day as if I was normal. Of course I was tired, but I kept on going. Of course there were days when I wanted to lay in bed each day, but I was determined to fight this and to fulfill my dreams.

Everything was fine until March, 2008. I was at my local gym working out, when I suddenly felt dizzy and started seeing little white lights spark in front of me. I thought that I was just exhausted from pushing so hard and because I hadn’t eaten anything all morning. Besides I hadn’t been inside a gym in over a year. I got down from the Stairmaster and walked into the bathroom to wash my hands. I was looking into the mirror, when I noticed the little white lights again. I felt sleepy, so I walked into the locker room and laid down on the bench. I closed my eyes…. I awoke in the emergency room at Harbor UCLA hospital, strapped down on a gurney. I was admitted to the hospital and results would show that I had two tumors in my brain and a clump of tumors in my lungs. My melanoma had returned! They diagnosed me with Stage IV melanoma and told me the prognosis was not good. Not good at all.

I underwent four weeks of radiation, followed by the first treatment of chemotherapy. I was in pain, my hair fell out completely, I was always tired, I could not stop coughing, I had an upset stomach every morning, but I kept working. I wasn’t about to let this disease eat me. I was determined to fight. My daughter decided to move in with her father. She said it was too painful to see me and she didn’t feel comfortable sleeping next to me. She was afraid she would catch my melanoma. Hearing this was more painful than any tumor or any treatment. I was also losing my little baby to this terrible disease.

May, 2008: I have been seeing two new melanoma doctors for one month now. I qualified for a clinical trial and am currently into my 12 week program. I still work every single day. I strongly believe it is all in your mind. I can lie in bed and let this disease eat me or I can get up, get dressed, look in the mirror and thank god for the two things that drive me. I will continue to fight so my daughter will come home. I will continue to fight so my company will grow. I will continue to fight so my hair will grow back. I will continue to fight so I can drive again. I will continue to fight so I can stop coughing for one day. I will continue to fight until I beat this disease.

-This is my best friend’s story, in her own words. She lost her courageous battle with melanoma in 2009. She asked me never to stop sharing this story and educating others.

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