Amanda Martin (Hamilton): Melanoma Survivor

On July 21st, 2015, I got the phone call that will forever change my life. I was told I have melanoma, skin cancer. About two weeks prior, I had a nasty mole on my thigh removed and it was sent in to get biopsied. All I was able to do is cry at first. Why? Well, I was only 22 years-old. I just had a baby exactly two months before that. I never tanned, and I hated being out in the sun in general. Honestly the only thing I could ask myself was, am I [going to] die? I laid in my bed looking out into the living room at my sweet baby boy. I wiped away my tears and told myself, I got this. I will beat this. I have my son to raise.

Within the next couple weeks, I was meeting new doctors and learning so many new things, and it did get overwhelming at times. Since I did just have a baby, my stomach was still going down, and since I had a c-section, it took longer. I happened to notice a hard lump in my groin. I showed it to my doctors and they sent me to get it biopsied. It came back positive for melanoma. The cancer had spread to my lymph nodes. I was officially “staged” I guess you can say. I couldn’t believe that I had stage 3C metastatic melanoma. I couldn’t believe that I had cancer. I didn’t feel sick. I always thought you felt sick if you had cancer. There was so much I didn’t understand. All I know was that I just wanted it removed and I wanted to continue with my life.

Since it spread to my lymph nodes, my oncologist quickly got me set up for surgery. On August 27th, I went in for the big surgery. I had the rest of the melanoma tumor removed from my leg and 14 lymph nodes removed from my groin and thigh. I have three scars. Two 6-inch scars and one 12-inch scar. Once all my results came back, I came to learn that not only one lymph node tested positive, two did. I also learned that where they removed the rest of the tumor, the cancer was already seeding in a new place. Thankfully they got it cut out when they removed the original one. Recovery sucked. I had two live with two drainage tubes hanging out of my stomach for a couple weeks. They kept getting clogged and they were uncomfortable. Let’s just say I was one happy girl when they came out.

Of course, while all this was going on, we were having issues finding a treatment plan for me. My oncologist wanted me on a trial treatment. Of course, with all the cancer centers around me, these trials were not open or available. I had to be on something by the beginning of December, or I would have had to start regular chemotherapy, which they really did not want. Or, I would have had to move out of state. (I live in Pennsylvania, and I almost had to move to Texas). Literally, in the last few days, we got the best news ever. The one treatment they wanted me on opened at the cancer center I’d been going to! RIGHT IN TIME! I was so happy. So, I started my treatments on November 18th. The treatment is called Yervoy. It is an immunotherapy drug. My first four treatments were every three weeks. So, I had to go to the cancer center, get bloodwork, then sit for 90 minutes while I got my treatment through an IV. Thankfully no port! For the next three years, after the first four doses, I will go back every three months for a “maintenance” dose as they call it, just to be safe.

In January 2016, I started noticing some swelling in my leg and I did some physical therapy. I have slight lymphedema in my thigh. Thankfully it didn’t spread to my lower leg… Yet. So, therapy lasted a couple weeks and things went smoothly. On March 29th, 2016, I finally was able to hear that I am NED—which means there is NO EVIDENCE of DISEASE!! Greatest news ever! As months went by, I continued to do my treatments every three months and get regular scans. My oncologist likes to keep an extra close eye on me since I am high-risk which makes me feel good! Over time my lymphedema has gotten worse and spread down to my foot. So now I have to wear whole-leg compression stockings which can get annoying sometimes.

Now to January 2018… I continue to be NED. I have less than a year left of my treatments. My next one will be on Valentine’s Day. I still have to deal with the effects of lymphedema. I am just glad I am alive, beating this horrible disease and getting to raise my wonderful son. Now I will continue to get my treatments and protect my skin and continue to go for regular check-ups and just hope nothing EVER comes back. Even though this journey has only been a couple years, I will be on this ride for the rest of my life. This evil cancer can come back at any time. People tell me all the time, they don’t understand how I am so happy and so calm during all this. I just say that I have to be calm. I don’t have time to freak out. I am busy fighting. I am busy taking care of my son. I am busy living my life. Now I plan on living my life to the fullest. Of course, I will be smart and protect my skin while I do it.

P.S. They said me getting pregnant was the best thing that could have happened to me. My hormones helped push the melanoma outwards instead of spreading in my body. So technically my son saved my life, and he doesn’t even know it yet. He is my hero.

Angela Froboese: Basal Cell Carcinoma Survivor

My story is a little different. This summer I unexpectedly had four people in my family pass away the same week. I believe because of that stress I kept picking at scratches on my arm without even thinking about it. After a few weeks of my arm not healing, I had a few coworkers mention that I might want to go get it checked out.

Two days before my dermatologist visit, I had a pimple develop at my temple. It kind of hurt and truthfully, I thought, ah man, the doctor is going to think I am a teenager with this pimple. So, I head to the doctor for my arm and they tell me to undress. Wait, what? Why do I need to get naked just to have my arm checked? That scared me just a bit because I realized I had no idea what I should have expected. The doctor began checking all over my body and thank god, my arm was fine, and they gave me some cream to heal it. I was relieved that I was just being a hypochondriac. However, then the doctor checks the pimple and says “Well, we need to test this out”. Wait, for a zit? Sure enough, she comes back and says it’s the basal cell cancer.

Now I have always been a pasty person, and therefore I have used sunscreen my entire life. So, it made no sense how that could happen. I’ve only been to a tanning bed twice in my early 20’s and I usually wear hats when I’m coaching. However, the more I thought about it, the more I realized, I am not good at reapplying the sunscreen. Being a softball coach, I am out in the sun every day for at least three hours. I also spend most weekends recruiting at tournaments. Most of these places do not have shade for you to stay under. The more I talked to the doctors the more I realized that just putting the sunscreen on once was not enough. Also, if you are going to use the spray, you must reapply that even more. Awesome, all things I kind of knew but refused to pay attention to.

Fast forward a few weeks to the day before I am scheduled to get the cancer removed and Kristen from The Shade Project comes to do a speech. Those that knew what I was going through paid a lot closer attention and of course kept reminding me that at least this skin cancer was the least serious one! All of that was true but I was still scared to death. All I could think about was that I was about to get part of my face cut and get to do follow-ups every three months or so. I went from rarely having to go to a doctor to making permanent appointments for the rest of my life.

The removal itself was not as painful as I thought it would be. However, the smell of the burning flesh is something that will always stick with me. I was lucky that it only took two attempts to get it. I know many others that took seven or more tries. I have also started paying closer attention to my skin. Recently, I had another pimple pop up on the other side of my face that hurt and didn’t seem right. I went in immediately and the doctors used the liquid nitrogen to freeze it off. I have a few more spots that keep coming up and I will keep going in!

I now feel the sun a lot more when I am outside. I make sure I am constantly reapplying sunscreen. I remind other coaches to do the same while out recruiting and of course, I remind my team as well. I think the biggest thing for me to say is to pay attention. I was dismissing a “pimple” that hurt and didn’t feel like others that I’ve had. It took a terrible week this summer for me to go get checked and it has prevented me from what potentially could have been a terrible future.

Graham Fowler: Melanoma Survivor

From Graham’s mom, Cheryl: Graham’s story as seen through my eyes. It is hard to be a mom, even harder to be a good mom, but nobody can prepare a parent to hear the words, “Your child has cancer.” It hit me like a ton of bricks, I never saw it coming and the sinking feeling inside me still remains—almost 5 years later.

In early 2013, Graham developed a small, raised bump on his arm that resembled a blood blister. He picked at it, and it would bleed more than a normal scab. It continued to grow back, so we asked his pediatrician to remove it. We were not concerned in the least. It did not look concerning. His doctor was not concerned. After the removal, his pediatrician said that it looked, “inflamed” under the microscope, but nobody was concerned as they thought it was because he had picked at it so many times. They took a little more and again told us not to be concerned. We named the little bugger, “Adolf.” Adolf continued to fascinate the pathologists, and they continued to take more of Adolf. Nobody seemed concerned or even used the word cancer. Adolf went on tour, too many pathologists. On April 19th, 2013, Graham was diagnosed with Spitzoid melanoma. On April 23rd, he had Adolf removed, along with several lymph nodes. That was the start of our never-ending journey.

Graham has a fascinating history, including a first cousin who had melanoma as a child. His tumor was classified as Clarks Level V. His original surgery was at Children’s Hospitals and Clinics of Minnesota, his follow up care at the Mayo Clinic in Rochester, Minnesota. He has a remarkable team of doctors at the Mayo Clinic, but kids don’t get melanoma. He had no egregious sun exposure, we live in Minnesota! Graham’s team watches him very closely because there is no real universal protocol for pediatric melanoma. I call Grahams’ follow up plan, “the sitting duck plan.” As more options become available, such as the recently approved use of Ipilimumab, children will have better options for early intervention and ultimately better outcomes.

As a parent, you wait, you watch, you check their skin every night and panic over things like a pen mark, or a little food stuck on their face remaining from lunch! Living every day with this beast is hard. Graham endured dozens of surgeries, has battle scars that he has adjusted to, and lymphedema that causes him great pain. He misses school, relies on medication to control his pain, and tries to hide is compression stockings from all the other 14-year-old kids that make fun of him. It sucks.

I was fortunate to give birth to this fabulous little boy that has decided to turn his experience into a passion for sun safety education and melanoma philanthropy. He rarely cries, never asks, “Why me?” and forges through with strength and enthusiasm. I do worry about those few days when he does cry. He once asked, “When will I be old enough to decide for myself to not have any more surgeries?” I cried that day, too. I cry in the shower a lot. He wants to play hockey, but he hurts. He loves lacrosse but has never made it through a season without having to recover from a surgical procedure. He wants to play basketball this winter—I signed him up and pray he makes at least half the season.

Graham started raising money when he was first diagnosed. He makes and sells bracelets for $1.00. All of the money raised he has donated to cancer research or melanoma research. He recently has joined forces with the Melanoma Research Foundation in hopes raising enough money to someday sponsor a pediatric melanoma research grant.

He fell in love with Tracey Callahan and the Polka Dot Mama Melanoma Foundation and helped create an awareness video called “These Tan Lines Don’t Fade”.

He attends Hill Day each year to talk to Congress about increasing funding for melanoma, and he even was invited by President Obama to visit the White House. As of today, he has raised over $100,000 for cancer research and also volunteers with Make-A-Wish Minnesota. He looks forward to attending the Pediatric Melanoma Summit that Brenda Busby and the MRF sponsor, where he gets to meet other kids that have melanoma and share their stories, learn about their disease and help educate those that don’t.

But, all that being said, he still has melanoma. There is no cure. He hurts every day and is a sitting duck. His childhood has been robbed by a beast that I, as a mother, have absolutely no control over. It is a horrible feeling. I have joined organizations, foundations, support groups and most recently became a facilitator with the melanoma exchange.

He misses a lot of school, missed his 7th-grade yearbook picture, misses field trips, and struggles to play sports. He has traded in his tank tops for UV blocking clothing, he packs sunscreen in his backpack, and he wears a hat. He is tired after school and relies on pain meds at night. He is still a happy little boy that loves life—he just got dealt a bad card.

Please follow Graham’s Gift on YouTube and Facebook.

Karlee Steele: Melanoma Survivor

“MOMMY look this tadpole is one of the ones that still has a tail and little legs too!”

That’s not what you thought I was going to say was it?

You see it’s a hike. A climb. A Texas climb straight up from Lake Travis, through the Lake Pointe Preserve, straight up. I know this climb well, in fact my son and I know it very well as one of our favorite fishing and tadpole spots. It’s hidden under crystal green spring waters only found in the Texas hill country. No one is ever there. Ever. Which is why we love “our spot” so much.

As we journey home that crisp day in January last year my phone rings. Weird as it was a holiday Monday, I knew it was the call we anticipated for 10 days.

“Karlee, Dr. Gambarian, your surgeon. The needle biopsy we did 3 weeks ago, the one that we thought was negative. Well it’s actually, positive. After your second surgery last week it has been confirmed you have stage 3 melanoma.

“Wait. What do you mean?”

“I mean you need to find an oncologist immediately. You have full blown melanoma skin cancer. Not skin cancer on the outside of your skin. But inside. It’s in your nodes under your right arm. I have an oncologist I can recommended. And you need to make an appointment tomorrow…”

So there I stopped, up that steep Texas climb I referenced. Stopped dead in my tracks. Rocks sliding out from underneath my feet and tears falling. Hidden, thankfully, behind my sunglasses. The kind of tears you can’t control. They just fall.

Fortunately my son and our big red dog were pulling up the hill ahead of me with determined vigor and speed that only 9 year old little boys have.

“Mommy, why did you stop? You’re never far behind me. Usually I am the one trying to catch up to you. Let’s go mommy!”

“Coming babe, I’ll be right there.” And so I was. As I always am for him. But now what?

I can’t put words around what it feels like to get the cancer call. You can’t describe it unless you have traveled down that path and heard those words. Stage III cancer – how do I have stage III cancer? I eat more veggies before 10 am than most eat all day. I teach cycling class 3 days a week and exercise 6 days a week. Weekly, I meal prep and plan to put the most nutritious food in our bodies. I take pride in living a strong healthy life not only for me, but more importantly for my son.”

Source: Karlee Steele – YouTube

Keegan Knappert: Melanoma Angel

From Keegan’s mom, Paula: “Keegan (which means Little Fiery one) had the ‘it’ factor since the day she was born. Throughout her life she was kind, but she was spicy. Keegan embodied goodness. She was tenacious and never gave up on her fight or helping others around her. She was unpretentious and kind. She was honest and sometimes charmingly blunt (must have been the ‘Ginger’ in her). She was positive and persevering. She was a WARRIOR and a real HERO. Click here to read more about Keegan’s life, her melanoma journey and the legacy she created with Keegan’s Kids Foundation for Pediatric Melanoma.

Crystal Henderson: Melanoma Survivor

I lived in the sun as a child. I never wore sunscreen. My parents didn’t even talk about it. I always tanned and have never had a sunburn in my life. As I got older, my sun addiction grew. I was scared of tanning beds at first because I didn’t want to get skin cancer but eventually, I gave in and started tanning a couple months out of the year.

In February of 2016, I noticed a mole on my right side under my ribcage that looked a little odd and it was itching like crazy. I asked my primary doctor and she wasn’t too concerned. She said it was likely just a mole. I continued to tan, and I just put sunscreen on the mole to keep it from getting any more exposure—I know, not the brightest idea. Finally, at the end of June, I convinced them to take the mole, but I had to sign a waiver that it was for cosmetic purposes and my insurance might not cover it. A week later I got the call. My diagnosis was superficial spreading melanoma. My doctor was shocked. I cried my eyes out.

At 34 years-old I had cancer. I have three kids at home, my youngest being two at the time. I remember researching and googling and driving myself crazy. Eventually, I found a support group on Facebook and they really helped me get through my rough days. I finally got my staging. I was stage 1b. My mole was .44mm with a mitotic rate of 1 Clark’s level 4. I had a wide local excision and a sentinel lymph node biopsy. Another two weeks of waiting and my lymph nodes were clear. I now see my derm religiously every three months and have six-month check-ups with my oncologist. It’s a new normal you learn to live [with]. I never thought it would happen to me.

Julie Witts: Melanoma Survivor

Ten years ago, I found a mole that got me concerned on my right shoulder. I had it removed in December and it came back the following year as a lump in my neck. I was told it was stage 3 melanoma, I had a ten-hour operation to remove the melanoma and they also took out 12 lymph nodes. 3 others were infected, so I went to the Royal Marsden hospital for a trial drug and regular treatment and managed to survive it. But, a recent CT scan showed a 5mm nodal on my lung and by the second scan, it had grown to 6mm. I’m waiting to have a biopsy done on it after the next scan. Last week I had another suspicious mole removed from my right arm, and I have also found another lump in my right hand which I now have to get checked out by my doctor. I just hope it will be good news this time. Thanks for reading this if it can help in any way.

Sarah Spencer: Melanoma Survivor

Oddly enough, my skin cancer story began with my birth! Well, to be more specific I was born with a congenital nevus (aka, birthmark) on the second toe of my left foot. It was a dark, asymmetrical mole that I always thought was ugly and so for the first thirty-odd years of my life, I just ignored it until it became impossible to ignore. In my early thirties, this mark began to slowly change. It was almost imperceptible at first, so it didn’t raise a red flag right away. Eventually, I did notice that it appeared to be getting bigger and by this point, it was even starting to itch and give off little random burning sensations. My husband and I made an appointment with a dermatologist but in the meantime, I was googling all about melanoma. After finding out about the “ABCDE” warning signs of melanoma, I was fairly certain already that this was what was going on with my toe. But I still couldn’t really comprehend what a melanoma diagnosis would mean for me.

On New Year’s Eve 2013, the P.A. at the dermatologist’s office called me and confirmed my suspicion. Not understanding the sneaky and aggressive nature of melanoma, I just assumed that the offensive birthmark would be cut off, I’d have a little toe scar, and that life would go on as usual. I was so very wrong! The dermatologist’s office referred me to MD Anderson Cancer Center in Houston. I went to my first appointment not really knowing what to expect but I definitely DID NOT expect to be told that the top half of my toe would need to be amputated. The surgical oncologist informed me that I was in good company as Bob Marley had also been diagnosed with “acral lentiginous melanoma” and she reassured me that although I was undergoing a distal toe amputation, I would still be able to wear flip-flops—silver lining!

The biopsy showed the melanoma was very slow-growing, not very deep, and there was no visible mitosis. I was assured that prognostically, this was all very good news. But to be on the safe side, I would also undergo a sentinel lymph node biopsy while I was in surgery for the toe-top removal. My oncologist informed me that she was 98.99999…% confident that the melanoma had not spread.
Despite her well-intentioned and optimistic prediction, unfortunately even the best doctors are not always right. The sentinel lymph node biopsy revealed a microscopic amount of melanoma in the largest of three nodes. This advanced my clinical staging to Stage 3A. My heart sunk. After picking it up and dusting it off, the next course of action was an inguinal lymphadenectomy wherein another 16 lymph nodes were removed and dissected. Good news this time, all of those lymph nodes were clear!

All follow-up scans since the last surgery have shown “No Evidence of Disease” and for this, I am so grateful. But fear of recurrence is always in the back of my mind and the permanent side effects of the operations I had are a daily reminder of the physical and emotional damage that melanoma can leave behind.

Jessica Vines: Melanoma Survivor

I worked in a tanning salon for a few years while I was in high school. I used tanning beds on and off for probably about 3 years. Around age 23 I noticed some changes in my moles and decided to go to the dermatologist for my first skin check. Luckily, my moles came back as mildly atypical and no further treatment was required. I stayed diligent from that point forward and had skin checks once or twice a year. Fast forward to summer of 2017. I am 29 years-old and busy planning my wedding. I had recently moved to a new city and found a new derm. I went in February to see her but didn’t feel like she was “thorough” enough so in July I decided to get a small mole on my foot rechecked by a new derm.

About a week before my appointment, a small mole on my right shin began to get darker and slightly scabbed. I mentioned it during my appointment and the derm decided to biopsy it as well. My foot came back fine but much to my shock my leg was melanoma in situ (earliest stage). I had surgery 4 days later.
I went through all the emotions immediately. I was a wreck emotionally and still struggle to keep a balance in my mind. It’s a scary shocking road to have your whole world rocked 8 weeks before your wedding.

What I’ve come to realize in the last 3 months is to trust God more and worry less. I am also extremely thankful for how early I caught it and how in tune I am with my intuition. I’ve learned more about life in the last 3 months than I did in my 29 years on this earth. In a weird way, I am thankful for this eye-opening experience and I plan on living each day the way I should’ve been living prior to this diagnosis. I will never take my health for granted again and now I know how precious each day truly is.