I received the results of the two biopsies I had done a few weeks ago. The itchy mole on my abdomen was just an irratated mole. (Whew!) The "smudgy" area on my right arm came back atypical/dysplastic. This means that there were precancerous cells found. There were not clear margins, so I will be going back to have a larger biopsy. They want to wait another month so that the original biopsy will not be inflammed at all.
I had a moment of pure fear as the nurse read me my results. I felt like I was going to hear the dreaded word MELANOMA again. I am not looking forward to having another surgery. I am very glad it is minor and will probably just require a few stitches. I am glad that it was caught early! I am also so glad that I am seeing a dermatologist that knew there was something not right with the spot on my arm that looked "smudgy". I had showed that same area to 4 different doctors and none of them thought it was anything to worry about.
Just goes to show, you need to find a dermatologist that you trust AND you need to go regularly for appointments for skin checks. Also, trust your gut. If you feel that something is not quite right, get it checked out!
I hate to think what could have been if I had stayed on my melanoma vacation. It was great while it lasted,but now it is back to taking care of business!
If you have been slacking on your follow up appointments or if you need to have a skin check, please don't put it off.
It has been awhile since I have written! I have missed it, but at the same time, I have not. I have been very busy with my photography business and have literally no free time, which is good! I work during the day as a medical assistant in a doctor's office and that takes about 50 hours of my time a week. So, I have very limited time during the evenings and weekends. I have been feeling rather "normal" finally! Trying to figure out how to balance it all has been kinda hard though.
I did have to admit that I have felt so "normal" that I have sorta kinda put off my responsibilities as a melanoma patient. I have sorta kinda not been going to the dermatologist. Or doing skin checks. Or wearing SPF. Or posting anything on Facebook melanoma related. Or blogging. I guess I kinda sorta took a melanoma vacation. Why? Because, I could. It was something I could control. I am always looking for control of things since my diagnosis. It took me awhile to figure that out. When I feel I have lost control of something, I shut down. I can hardly function.
I was told by everyone of my docs that I am fine. And I have seen a few. Even got a second opnion and even though I felt better, I still felt like I was getting lost in the shuffle somehow. So, I dangerously started telling myself that I am fine. Why waste the money and the time on appointments. Why waste the time STRESSING all the time! I had better things to do than let melanoma have control. Besides, I was tired. Tired of thinking about melanoma. Tired of it all. So I took control back and ignored melanoma. Take that melanoma!
I know. What an idiot. It just hit me like a ton of bricks one day last week that I was being pretty stupid. My fiance says it was probably my friend Briana whacking me upside the head. He is probably right! So, I put on my big girl pants, and just to make sure I fessed up to it, put the whole dirty secret on Facebook for all of my Facebook friends to see. I figured I would get a lot of people telling me I should practice what I preach, and I was wrong. I got the most outpouring of love and concern and understanding ever. I had people tell me that they could relate and understand that it was much more fun to ignore going for biopsies, and cutting and stress of melanoma. But, they also reminded me that early detection is what saved my butt the first time. My friends are the best. They of course understand my fears and needs. But, I knew what I needed to do before hearing it. I guess I really wanted people to know that I am not perfect. I don't always listen to my own advice. I felt it is important to continue to be honest about everything with this journey. Even to myself.
So I called my PCP and got a referral to a dermatologist the next day, and it happened to be one I had heard of years ago, and my sister had seen. She liked him a lot. I made the call and they got me in fairly quickly. I felt so good afterward. I had an appointment and I was getting back on the horse!
I met Dr. K yesterday and I was very nervous, but excited at the same time. I really was hoping that nothing would look odd enough to warrant a biopsy, but as he said, I am a 'very mole-y girl". There was one spot on my arm that he didn't like. I had never liked it either. He called it "smudgey" looking. I pointed out the itchy mole that I had on my tummy. The one that used to itch like crazy when I was a tanaholic. But, none of my other dermatologist's, or doctors ever thought anything of it. Even the U of M doc didn't think it was anything. Dr. K simply said, "If it has EVER itched, it is gone." I like him!
He said he really isn't worried about either of them, but I know that looks can be deceiving and he was probably just trying to not make me worry. I am just going to pray on it. A lot. I don't really have time for melanoma. But I DO have time for my check ups and my skin checks. I made a promise to myself that I will never slack off again.
I just need to find the balance in the journey. I can't let it run my life, but I can't turn my back on it either. I need to live my life, but I need to be here to do it. I will figure it out! Life is my new journey. I will keep you posted on the results!
Did you know that today is National Sunglasses Day? Well, it is and when I heard, I knew I had the perfect photo to share with you!
You may not know, but I am a photographer here in Michigan. I shoot mostly kids and families. I recently had a photo shoot with the cutest little 10 month old girl, Hayley. She made my job very easy! She loves the camera and was full of smiles. Get ready for some cuteness!!
You also may not know that you can get MELANOMA in your EYES. Yes, that is right. Thought it could only appear in a mole? Nope, it can appear in your eyes. So be safe, wear sunscreen, protective clothing, hats, sunglasses, and be safe while you are having fun this summer!
Hope~to wish for something with expectation of its fulfillment. To have confidence; trust.
The
word “hope” is an indication
of certainty.
Hope has been a word that has stuck with me through my entire journey with melanoma. I have hoped for many things. I have been disappointed sometimes, but I have never given up hope. Especially for a cure for melanoma.
When I was first diagnosed with melanoma and went through my surgery, I thought a lot about getting something that symbolizes my journey. I knew a tattoo was the way I wanted to express myself. I went back and forth on the design and took 2 years to figure it all out. I had an idea and I had to find the perfect person to design it.
I went to one tattoo parlor with a drawing that I had done with the word HOPE. I tried to explain what I wanted to a heavily tattooed and pierced lady. She didn't get it and I felt very uncomfortable, so I ended up waiting about 6 months longer. It was May, Melanoma Awareness month. I wanted to dye my hair black, but I decided not to since my hair is pretty fragile right now. I was busy. Way to much to do a lot of the things I wanted to do. Then it hit me. I was going to go get my tattoo. My daughter and I left and went to a different tattoo parlor. One that I had researched and found to be the best in the area. So, with my daughter for support, I went in with just the idea I had. The guy drew out what would become my tattoo. He asked me, "Do you like it?". Near tears, I replied, "No. I LOVE it.". My daughter agreed.
An hour later, I had another mark on my body. This time, it was one that I wanted put there. Not another melanoma scar. Not another battle wound to remind me of what could have been, or what could be. Now I have a reminder to myself to never give up.
I had not heard the term "Tanorexia" until "Tan Mom" Patricia Krentcil, made her debut for allegedly taking her 5 year old daughter into a tanning booth with her. I started hearing more about tanorexia. Tanorexic people don't think they are tan enough, and are always wanting to be tanner. They tend to over tan. Sometimes more than once a day. Tanning makes them feel good and it is addictive. They justify it and some even laugh in the face of death by saying, "At least I will know what I am dying of." or "At least I will look good when I am dead." It started making sense to me. I had been tanorexic. I made excuses, and I felt like people were trying to take away something that gave me pleasure. After a long day at work, it was my 12 minutes of relaxation. I felt amazing after I walked out of the tanning salon. I was sure I looked amazing, just like all the photos, and ads told me, because I was tanning!
Patricia Krentcil "Tan Mom"
I never thought or associated tanning with death. I honestly thought that I would not get skin cancer. Dark hair and eyes, no family history, tanned easily....so, I signed my life away at the tanning salon because it said "risk of skin cancer." It didn't say "in 1 year you will be diagnosed with something called Melanoma, and you will have surgery,pain,fear and guilt for the rest of your life. You will make a lot of new friends and some of them will die. Others you will watch fight and go through pure hell just to live. Some are so young." It never told me what I was REALLY signing up for. So I signed and I tanned until I was a crispy shade of dark brown. I was happy.
I have a ton of guilt for what I have done to myself, and for telling my daughter that she was too pale and she should start laying out to become tan. (Mom of the year award there!) So glad she didn't like to do it though. (Whew! Smart kid!)
My friend, Chelsea, said it best,
"I try
not to beat myself up too much because what is done is done, and all I
can do is share my experience with others in hopes that they will make
better decisions than I did, but I REALLY regret my tanning days on
result day. Protect the skin you're in."
She posted this as she was going to get results of her latest scans. (Which showed NED by the way! Yay!) I also deeply regret my tanning days and can relate to her post so much. We can't go back, so therefore we tell our stories, share photos, participate in trials, spread the word every chance we get, do interviews, see our dermatologist, bond and fight together and try not to go completely mad because we can't see what is going on inside our bodies. We are helpless that it could come back when we are told we are NED. It is all so not worth a tan.
I have been going through old photos for my daughter's upcoming grad party next month. I have come across some photos that literally make my skin hurt! This one in particular stood out. It was taken on July 4, 2010. 6 months after I started using tanning beds, and had actually stopped for the summer for about 4 weeks. It is embarrassing to me now. Back then, I am sure I thought I looked good.
Why? Why was I so dark and crispy, and thought I looked good?? My kids look normal and I look so bad! The words from my step dad echo in my head. "You are getting kinda dark."
I hated it when he would say that. It wasn't the first time he had. He knew not to come right out and tell me not to tan, because I would have gotten mad (and I still would have anyway!) Stubborn is my middle name! He would just tell me in a round about way because was worried about me. Almost 2 years later, he went in for a check on a spot on his nose that kept bleeding. He had a basal cell carcinoma removed from the bridge of his nose and it left an indent. The man that used to slather on so much sunscreen to mow the lawn, he looked like Casper the ghost, was not invincible. He thinks it happened way before the days when he started taking care of his skin and using sunscreen. (He was a life guard and used to race sailboats in his younger years.)
Here is another gem.
All I can say is WTF?? I remember talking to Kevin later and told him, "Wow, look how pale you are?" He tried to tell me I was too dark. How could he possibly love someone that looks like this? SMH. But he claims he does! And I am grateful!
So there you have it. My tanorexia days. They were not my proudest. It cost me a lot more than some bad pictures. I have damaged skin and the fear EVERY DAY of a reoccurance, even though they say I am NED and caught it really early. I have melanoma for the rest of my life.
I will now share the video of my interview last year for Melanoma Awareness month.
I really hope that more people realize that tanning is not pretty, it is damage, and it can cause skin cancer. Melanoma. Fear. Wrinkles. Loss of elasticity of the skin. Premature Aging of the skin. Fear. Fear. And more Fear.
It IS Cancer.
Melanoma scar 2 days post op
Melanoma scar almost 2 years post op
So, please protect your skin and please protect your children's skin. Trust me on this. You do not want to deal with melanoma. EVER. Sharing in the hopes that you will listen.
I am still in shock here. I just learned that Steve Perry, singer of 80's band, Journey, had melanoma removed recently. He has had 2 surgeries to remove it, and they have told him that he shows no evidence of melanoma.
"Don't Stop Believing" has always been a favorite song of mine. It took on new meaning after my diagnosis of melanoma. It has become an anthem for all of us fighting the melanoma beast. It is very surreal to me that Steve had his own encounter with melanoma.
Best wishes to Steve on his recovery and my heart goes out to him for the loss of his beloved Kellie.
I have not posted in so long! I have totally missed all of Melanoma Awareness Month, which is celebrated in May. I also missed posting about Melanoma Monday. The first Monday is May is dedicated to Melanoma Awareness. I wore black almost every day and I spread as much awareness as I could.
I have not been posting very much lately because I have been very busy. Busy living. Something so easy, but something that I hadn't really been doing.
When I hit my 2 year cancerversary in April, I realized that on my first cancerversary, I was so happy to make the one year and I wanted to scream it from the roof tops, along with "Wear sunscreen!" "Don't tan!" and "Protect your skin!" I also wanted to celebrate BIG and we did. I was fighting melanoma the only way I knew how. By spending hours researching and educating. I wanted everyone to know how bad melanoma is. My world revolved around melanoma. I was scared of it coming back. I didn't want it to happen to anyone else.
As my 2 year cancerversary approached, I realized that I had changed. I had seen and experienced some very painful losses and I had grown in many ways. My family wanted to know what I wanted to do to celebrate. I wanted something simple. To spend a quiet night with them. They got me a cute cake and we spent the best evening together. I was celebrating just being alive, by living.
I realized that with everything that I had been doing to raise awareness, I was really forgetting the most important thing. To live my life I was so blessed to have. I was so busy working all day and night and in any free time (haha), I was educating about melanoma. My kids were growing before my eyes and I was a little preoccupied. My family had really jumped on board too and were also educating and were very proud to tell me what they had done to do so. It had consumed me in the beginning, and slowly over the next 2 years, I relaxed a little and I started becoming a part of my life again.
Losing my dear friend, Brianna, and before her, Jillian, made me realize how precious life it. And that melanoma really does suck. All Brianna ever did was live her life. She didn't spend hours dwelling on her diagnosis. She just lived her life and fought. She never let melanoma control her. She always had such a positive attitude and a huge smile. If you asked her about her melanoma, she would respond with, "Oh it is just a stupid tumor. No biggie." Her nickname was Breezy, and it suited her. Jillian, I imagine just wanted to be a normal girl. She tried not to be the girl with melanoma. She lived her life to the fullest, even though there were laced with doctor appointments.
I looked at my kids and realized how precious every single moment we have together really is. Once it is gone, you can't get it back. I had not been spending enough time with them. I had always spent time with them. They are the most important people in my world. They need me. (They are 22 and 18 now. Adults, technically, but still my babies!) I was a single Mom for years and we were a team. I had drifted into the world of melanoma and I had stopped living. I felt overwhelmed with the responsibility of my normal world and had a hard time making decisions after my diagnosis. My fiance and I hardly spent any time together. I didn't do anything with friends. I decided that I needed to make a huge change back to being myself and I have not been happier! I am their Mom again and it is my first priority.
I also have really spent some quality time on my photography business and it has made a huge difference! Anyone that knows me, knows that my passion is photography. When I was diagnosed, I went out and bought my camera I had always wanted, and started my photography business. I am happy to say that I am devoting more time to my business and it has really paid off! Some day I want to make it my full time job. Working hard to make it happen has made me extremely happy!
I am still passionate about melanoma awareness. I will never stop educating about melanoma and I will never stop sharing my story. It is definitely something that is very close to my heart. I have just decided that I need to take a lot more time to live my life. I am still around and I am not planning on leaving. I just might be a little harder to find.
It has been over 2 years since my diagnosis. I have spent over 2 years trying to spread awareness of this horrible cancer. I have seen so much pain and suffering. I have cried, and I have laughed. I have changed since my journey began over 2 years ago. I celebrated quietly with my family (and a cute, yummy, little cake!), my 2 year cancerversary on April 27th.
I reflected a lot on the last 2 years. I realized that I have really gone through a lot of changes since I was first diagnosed. About 3 years ago, I was not indoor tanning, but getting ready for summer to start and that meant laying out on my lounge chair all weekend, "soaking up the rays". Getting dark was the plan and I knew how to get my tan just right. I would spend hours laying out. I would love the feeling and the time I could "get away" and relax. Funny, I don't miss it at all.
I have spent the last 2 years trying to figure out how to spread awareness and stop people from doing the very thing that has caused me so much fear, pain and sadness. I still haven't figured out how to stop people from doing it. I have witnessed a lot of people continue to do it and not really care what it can do to them. Some have even said that they don't care if they get it, because at least they will know what they are dying from, or they will look good when they are dead.
I have seen a lot of ignorance. I can't change it. I can only put the info out there and hope that they will learn from it before it is too late for them. I can keep spreading awareness and one way is by telling my story and the stories of my friends. I have not passed up an opportunity to share my story, and my photos and I never will. I still want to help change the world's views on tanning.
So, as I count my blessings at my 2 year mark, I will reflect and I will continue to go forward and spread the word that melanoma is called the beast for a reason. It has taken my friends from me and I have the fear every day that it will take me away from my family.
Trust me. It is not a great feeling to know what you may die from. When you are diagnosed with melanoma, there is so much fear. There is no sure cure. Cutting it out is painful and leaves scars that run deep.
Just wanted to share this picture my 15 year old niece, Bree made after her friend passed away from melanoma yesterday. She is hurting from the loss of a friend, and she is also angry at melanoma for taking her friend from her. 15 years old is too young to die. My heart goes out to the family and friends. I hope that someday this will not be happening at all.
Thank you Bree for always being supportive and for standing up and speaking out about the dangers of tanning and melanoma. I am proud of you and I love you!! Never be afraid to be yourself and to speak out. You can change the world and save lives. I am proud to have you in my corner!
Let's face it. We all feel more confident when we are looking our best. As a society, we go to great lengths and spend a lot of money to look good. We wax things, get our nails and hair done, buy the newest clothes and shoes, drive the coolest cars and a lot of you strive for the perfect tan.
Tanning salons make it very easy to get the perfect tan! Cheap packages, with unlimited tanning, targeted at teens. Sexy advertisements of young, beautiful people in their swim attire, looking perfectly bronzed. The lotions are to die for. Cute bottles, great smelling and leaves your skin so soft. The relaxing time that you spend in the bed, laying back, listening to your favorite tunes while you get that perfect bronzed and attractive tan. Because, tan people are prettier, hotter, sexier.
Something that is not pretty, hot or sexy is melanoma.
I was just like you. I started tanning outdoors at age 15. I hated my skin. It was pale and it was not glowing and pretty. I had acne and I hated the way I looked. I loved the way I looked after I got a little sun on my face. That progressed to tanning all summer as much as I could. It was so much fun to go to the beach with friends and soak up the rays all day, with my bikini and tanning oil! Laying on the beach or floating in the pool all day, being lazy. It was the life!
My tanning bed use started when I was 39. I didn't have time to lay outside all day getting the dark tan I wanted anymore. I tanned for one year off and on and one day while I was putting on lotion to get in the stand up tanning machine, I felt something on the back of my leg, above my knee. I looked and it was a mole I had for as long as I could remember, and it was raised. I didn't think cancer, I thought "I probably scratched it or something." I went tanning that day because, I couldn't miss tanning and I couldn't get melanoma. I kept an eye on it and I took this picture.
after 2 months of watching it. It continued to get a little bigger, so I started googling skin cancer. What I found was Melanoma. And the picture of melanoma, looked exactly like my mole.
Wait...what? I can't have melanoma. That's cancer. I have dark hair, dark eyes and I tan pretty easily. I can't get melanoma!
I went to my dermatologist and sure enough, it came back melanoma stage 1b. What does that mean?
Well, I had to have surgery. They had to go about 3 inches deep and they went about 7 inches long by 2 inches wide. I had a huge chunk taken out of my leg and I had over 20 stitches on the outside and more on the inside.
It took me about 3 months to completely heal. I still, 2 years later, have a lot of numbness around the scar. They also had taken some lymph nodes out of my groin area to test for melanoma. I had to wait a long 2 1/2 weeks for the results. Those came back negative. If they would have been positive, I would have advanced to a higher stage and would have had to have treatments such as chemo, or radiation, or more surgery. It was the longest, most depressing time of my life waiting to hear my prognosis. My family was living around me, going to work and school, and I was possibly dying because, I wanted to be pretty.
The hardest part aside from waiting, was telling my kids who were 15 and 19. Could you imagine losing your Mom just because she wanted to be tan? I felt a lot of guilt for not taking better care of myself for them. They still needed me and I couldn't leave them like this.
My daughter wanted to be just like me. She is very fair skinned and she saw me tanning in the beds, ( she hated laying out because she didn't like getting all sweaty and gross!) and she wanted to do it too. At 15, I felt she was too young to tan in tanning beds and told her that for her 16th birthday I would consider it. I was going to surprise her with a tanning membership and I was ironically enough, diagnosed about 20 days before her 16th birthday.
She had a very hard time with it. There is a lot of pressure to look good, and a tan is part of the package. She was teased by her friends, and team mates because she is so pale. She is now almost 18, and a Senior. She has seen what melanoma can do and she has learned that she has a very high risk of developing melanoma just because I have it. She is very careful and she actually loves her skin now.
I know that prom, spring break, summer bathing suit time is coming up, but trust me when I say, it is NOT worth the risk you take when you lay in a tanning bed, or tan outdoors, or even worse burn. The damage you do to your skin could literally kill you. Not a quick death, like being run over by a mack truck, but a slow and painful one. If it doesn't kill you, it will leave you with scars and with fear.
The fear is because melanoma can come back at anytime. Once you have it, you have it forever. Melanoma likes to travel to the brain,lungs,liver and other organs. It can present on the soles of the feet, between your fingers, under nails, in your private parts, or on your scalp hidden.
Did you know that Bob Marley died from melanoma? Yep. It started in his big toe. He was, as many of you know, a very dark skinned man. It can happen to anyone. I lost my best friend to melanoma. She was only 27 years young when she passed away. She battled melanoma for 6 years. She got married in May of 2011, and she is not here to celebrate her first anniversary. I miss her every single day. She only tanned 3 times in her whole life.
Unfortunately, there is no sure cure for melanoma. Melanoma in it's early stages can be treatable with surgery, but it can always present later at a higher stage and sometimes,by then, it is too late.
If you choose to still tan, after hearing my story, it is your choice, or probably your parents choice depending on your age, and what state you live in. But, I hope that you really hear my story and that you really take it to heart. No one is trying to stop you from doing what you want. You have the choice to stop or not. You have the information now and it is up to each of you.
Watch this video and remember that real people are diagnosed with melanoma and one of those real people die from melanoma every hour.
My daughter is a Senior this year and it has been such a busy/crazy year! She will be turning 18 in a few short weeks (!) and is working at a veterinarian's office. She is busy planning out her future (she wants to be a child psychologist!). She just got back from Spring Break in Myrtle Beach, which she paid for all by herself. I was hesitant about her going to a place known for partying, drinking, craziness without parents, and of course tanning everywhere. Isn't that what you go on Spring break to places like MB for? To tan and be on the beach in your bikini? She assured me that she would not be drinking, partying, or tanning. She just wanted to get away and have some fun.
I was nervous about letting her go, not so much about her being away from home (well, maybe a little!), but because I knew how hard it would be for her to not lay on the beach turning into a crispy critter like all the other kids going on spring break. In other words, I wouldn't be there to watch her. So, after I agreed that she could go, I bought her a ton of sunscreen and kept telling her how to reapply every 2 hours, and to avoid the beach between 10-4 and that sunscreen is not waterproof, the sand reflects the suns rays, etc.... she just smiled at me and would say, "I know, Mom."
When I picked her up from the airport, I admit, the first thing I did was look to see if she was burned/tan at all. And....she was not! Not even a LITTLE color! AND....she had a BLAST! I was beaming with pride. Her boyfriend was also not tan or burned at all. I was relieved, and I was so happy to hear about all the fun that they had. Think of all the time they could have wasted, laying on the beach, not to mention all the damage they would have done to their skin if they did! Years ago, I would have bought her tanning lotion instead of sunscreen. I would have taken her for a "base tan" so she wouldn't get burned, I would have told her she was too pale....:(
So, I guess melanoma has made me a better mother by rearing it's ugly head and teaching us the hard way to protect ourselves. It CAN happen to you. Regardless of your age, skin color, gender, etc. It doesn't care if you are graduating and have your whole life ahead of you. It just doesn't care.
She has Prom coming up and she is so excited about it. She has the dress, the shoes and the best accessory....her natural, beautiful, PALE skin! She looks stunning in her dress and I admit that even though I tried not to cry when she put it on, I did. I think of all that we have been through and all that we will go through together as a Mother and Daughter, and I am so grateful that we can.
I am very proud of my daughter for not being afraid to stick up for herself and to be herself. She admitted that she has been teased by other girls about her pale skin. It used to bother her after I was first diagnosed, even though she was never a tanner, but now she said she doesn't care what others think. She said that they are the ones that have a problem with her skin color, not her. I think they really have a problem with themselves. She wasn't given a choice about tanning, and she doesn't like to be told
what to do (like her Momma!). Once I was diagnosed, she was told she
will NEVER tan. It was had for her to accept that she could not be like the other girls.
She had to be extra careful because of ME. She blamed me for it at first. She and I have had so many conversations about melanoma and tanning. She also had to say goodbye to a good friend of ours that fought melanoma for years. She saw what melanoma could do first hand. I didn't sugar coat anything. She could have so easily been the one that was diagnosed with melanoma. I thank God every day that it was me and not her.
I look at my daughter and I know that she will never lay in a tanning bed, and her children will never lay in a tanning bed, and their children and on and on and on.....That will be my legacy. I changed that for us. And that makes it all worth it. Even though I won't be around to see it all, I will know that she will see to it that the cycle continues on.
So, melanoma, you will not win. You can't have me and you can't have my family. I think about how I was going to buy my daughter a tanning package for her 16th birthday almost 2 years ago. It is pretty ironic that the surgeon wanted to schedule my wide excision biopsy on her 16th birthday.
And 2 years later, she is tan free, melanoma free, and happier than ever.
So, for anyone that is reading this that may want to go on Spring Break to get a tan and probably get a sunburn and possibly get melanoma, or skin cancer to boot. Consider that life long damage that you are doing. Not only is there a strong possibility that you are causing cancer, you are also causing premature wrinkling and ugly age spots and other skin damage that will make you look way older than you are. Why would you want to do that to yourself? A tan fades, and the damage stays. Forever.
It has been 2 years since I heard the news, " You have melanoma." Time stood still. My life has been a roller coaster of emotions ever since.
It was April's Fools Day 2011 when I had my mole removed. I had done the research and I was sure that it was indeed melanoma. I had been preparing myself for weeks. I got my life insurance in place and other things. I had decided what I would do depending on how bad it was. I had called my tanning salon and told them I would not be back, EVER. I had spent HOURS upon HOURS online researching everything I could about melanoma.
I thought I was prepared to hear the words. I thought I was ready and that I could ask the right questions and that I would hear the answers, but it was all a blur.
How can you be prepared to hear that you have cancer? Melanoma has the reputation of being sneaky and spreading fast. A cancer with no cure.
I remember the doctor (dermatologist) was jet lagged from a trip back from some tropical destination. He wasn't tan though. I remember wondering if HE had skin cancer, who would remove it from him? Would he just do it himself?
I remember Kevin tensing up when the doctor said the words, "You have melanoma." I had my hand on his back. His breathing changed and he slumped down a little. I felt such a great amount of guilt at that moment. He had told me to stop tanning. He had told me I was beautiful without the tan. He tried to convince me, and I ignored and hid my tanning from him.
I remember hearing that we could pick our hospital and they gave me the info. We were going to get a call to set up an appointment for a surgical oncologist.
My head was spinning. I had met Kevin there, so we checked out and gave each other a hug. He said that everything was going to be alright. We drove home. All I could think about was, "How am I going to tell my kids, my parents..??" and "Am I going to die?" I was so scared. I cried on that drive. I had known that I had melanoma,but I did NOT know what it felt like to be told you have it.
I didn't realize how much my life was going to change.
Telling my kids was harder than I thought. I don't really even remember what I said or how I said it. I just remember the looks on their faces. The fear in their eyes. The concern. I felt like I was weak. I hated being weak in front of my kids. I had to be the strong one. I couldn't get melanoma. I didn't have time for that! I needed to be healthy and to be able to be a Mom to them. I feared leaving them and for them to see me sick.
The first time I said, "I have melanoma", was the next morning when I called into work. I thought I was okay the night before. I was being really strong, by holding it in. When I woke up in the morning, it kind of all hit me. Like a Mac truck! I couldn't stop shaking and crying. I had cancer and I had to have surgery to see if I was going to live or if I was going to die. I called into work and I told my office manager. She seemed annoyed, but whatever. I did let it get to me then, but now I just know that is the way she is. I was crying when I called and she didn't really even say anything to me that was comforting at all.
I had my family and I had my friends. That is what got me through.
I had my appointment with the surgical oncologist the next week and he explained the surgery. It was scary, but we picked a date. He said, "April 20th." I shook my head. He looked confused. I said,"Any day but the 20th. That is my daughter's 16th birthday. I can't do that to her." He said, "Ok, well then April 27th then, I don't want to wait much longer." I agreed. It was my sister and brother-in-law anniversary. It was a great day when they got married, may it would bring me some good luck.
The last 2 years, I have grown and changed a lot. I can't even remember what it was like to be the old me. I only know the Melanoma Me. It almost changed me for the worst. I have learned to not let it control me or define me. I am using my diagnosis to educate people and to change people's views on tanning.
It isn't always easy to stand up for what you believe in. I have had a lot of negativity and people that do not agree. I used to let it really get to me, but not now. I have grown some tough skin along with my pale skin. And I will never stop.
I didn't think of myself as a survivor, until I was asked to write a speech for the local Relay for Life event last year, as a survivor. I questioned if I had the right to say I was a survivor. I knew what I had been through was horrible and traumatic, life changing and still with me, but was I a survivor? I hadn't survived a natural disaster, a tornado, a hurricane, a car crash,a shooting, or an assault. I just had melanoma removed from my leg and I was told I was fine. But, why did it feel like so much more? Because, it was much more than a mole removal. It changed me completely.
I thought about the word survivor. I looked up the definition of survivor and found this.
"Survivor-a person regarded as resilient or courageous enough to be able to overcome hardship, misfortune; a person who survives; to carry on despite hardships or trauma and persevere; to live."
Then it hit me. We are ALL survivors. If you are not gone from this earth, you are a survivor. Anyone battling melanoma, no matter what stage, is a survivor. I am a survivor, and YOU are a survivor. A lot of people struggle to call themselves or even think or themselves as a survivor. Some feel guilt for surviving when others have not. I didn't realize how many people must feel like this, until I did this interview.
During the interview, I thought back to the Relay for Life. I was proud to be part of the survivor walk. The survivor laps were amazing. It was so emotional. I really allowed myself to be a survivor that day. I imagine that a lot of those people have also struggled with the survivor tag. If you think of yourself as a survivor, are you saying that you are free and clear of melanoma and can go about your life and just forget it? Are you jinxing yourself that you will have a reoccurance, or that you won't ultimately survive because you walked around thinking you already survived? It is very interesting that most of us are humble about it. Just like not thinking of yourself as a warrior because your cancer is not as bad as someone else.
I was asked during the interview about the post I made regarding stage discrimination, A Stage By Any Other Name Is Still Melanoma. The interviewer wanted to know if I felt that there were a lot of people that are higher stages that were non supportive of lower stages. I said, "Absolutely not. I have never encountered anyone that has ever tried to make me feel like I was not as much of a warrior or survivor as them, because I am stage 1 versus stage 4, until that happened. Everyone is so supportive,compassionate and caring towards one another. I don't know what I would do without my online buddies. I reached out in the very beginning of my melanoma journey and I have made a lot of good friends that have helped me tremendously and selfishly. We are like a family."
That is true. I honestly don't know what I would have done without the support and love from all of my online melapals.
So, do you feel you are a survivor? Do you feel guilty for being a survivor, or have trouble calling yourself a survivor?
I have one friend, every time I ask how he is doing, he replies, "Surviving." Maybe we need to do more than just survive. Maybe we need to make sure we are really living our lives. Let's not just survive, let's remember that life is a gift and we should not take it for granted.
Get out there and LIVE. Life is not promised. It can be gone tomorrow. Carpe Diem~Seize the Day!!
There are days that I call "Melanoma Days". Those days could be good days, or bad days, depending on the type of "Melanoma Day" it is. A "Melanoma Day" is what I call a day where everything draws me back to melanoma. I have them sometimes and when I do, I pay close attention.
Started as a normal day. I was at work and I started seeing butterflies everywhere. Not REAL, LIVE ones, but a patient brought us treats and they were in a package with butterflies all over them. I had a patient who had butterflies on her shirt. My friend Briana who passed away last month, was a butterfly lover and I felt she was telling me something.
My next patient, who was new to our office, had been diagnosed with melanoma years ago. She was stage 2 and was NED for the last 6 years. She and I chatted briefly. I love meeting others who are like me. It's like an instant connection! Makes me feel good that I am not alone, and also makes me realize that this cancer is REAL and BIG. There are a lot of patients that have melanoma in the practice I work for. It is nice to swap stories and to meet people who have been a survivor for years.
At lunch, I went to pick up my daughter to take her from school to work, and she started telling me about a friend that was tanning and how she told her that she was excited and scared to do it for the first time. My daughter told her not to do it because it causes melanoma and death. Her friend said it was okay because they were the "UV free tanning beds". My daughter was very upset by this and asked me to find out what they were because she was really worried about her friend. I went back to work with no time left to research this. I felt like it was just a way for the tanning salon to get people to lay in their death beds. (I had a lot of friends look up stuff for me that day, and as I suspected, there is no such thing! Thanks everyone!)
Then, when I got home later that night, my sister texted me that my niece's friend, who was only 15, died from stage 4 melanoma. Another awesome friend got her results back from a biopsy of a strange mole and it was melanoma. Again. Which means surgery, again. And she was taken out of the trial she was participating in. Damn.
As I put my phone down, a picture of my friend Briana was there and her beautiful face and huge smile were beaming at me. I lost it.
*SIGH*
Sometimes, it would be really nice to not have these kinds of days. That isn't going to happen. I miss my friend EVERYDAY. I encounter something related to melanoma EVERYDAY. How in the world did my life feel like before melanoma? I can't even remember anymore. I think that the more I try to ignore melanoma, the more it is there.
When I was first diagnosed almost 2 years ago, I was scared out of my mind. I reached out online and started sharing my story. I started healing. I didn't realize how much of a part of my life melanoma was to become. It is a huge part of my life. I have learned to live with it, to respect the sun, to treat my body with much more love and care. I have become healthier. I have become more intune with myself. I have become a lot stronger and I have become a lot more focused on my life and where I want it to go.
I am kind of hoping that tomorrow is not so much of a melanoma day, because I have a lot to do. But if it is, I hope it is a good news melanoma day!
I am SO proud of my fiance, Kevin (for so many reasons), but today I am proud of him for speaking out against tanning! Yesterday, he was interviewing a lady for a potential job and there was a gap on her resume. He asked her about it and she said she had owned her own tanning business, but that it was closed now. His reply..."Good, I am glad it's closed." She wasn't really expecting that and wasn't really happy about the comment, but he stood his ground.
The lady tried to defend tanning and "educate" him on the good things about tanning. He told her to STOP, then proceeded to educate HER on the dangers of tanning. He said he got really upset and thought about what I have gone through and what my friends have gone though. He has been through it all with me. He has been helpless to help me with the fear and turmoil that I have gone through since I was diagnosed with melanoma. He told her why he was glad calmly, sternly, and with raw emotion. She didn't have any ground to stand on, even though she threw out the Vitamin D and seasonal effective disorder (SAD) cards. He still didn't back down. It made him feel good to say what he did, to stand his ground. He
probably didn't realize how much info he has picked up just from me. He
has been a huge support through out my entire journey with melanoma.
He is on the other side of it. He is going through it, but doesn't
physically have it. He has his own emotions and experiences with it.
It has changed him to.
He proceeded to complete the interview like the professional he is. He didn't end up hiring her (for other reasons), but said he was glad he spoke up too, even though the person that was with interviewing with him wasn't happy that he spoke up SO much!
Can you say PROUD? It was the best gift I could have received. Better than flowers, better than candy or dinner, better than anything! He stood up and defended me and all my friends and our cause. I have to say that I love it when I hear about my friends, and family, stand up and educate! My 17 year old daughter, my sister, my young nieces, and my friends have also heard me and have shared the awareness too. They get it. They care. And it validates what I feel. It gives my journey and fight more purpose. It makes me feel that I am NOT alone. There are so many people that think I am weird for not loving the sun and for speaking out against tanning. They think a tan means you're healthy. They think skin cancer is JUST a simple spot removal. They look at me funny because I am anti-tan. They just don't get it. They are afraid to be too pale. Why are people so afraid of being pale? I have to say that for the most part, we are seeing a lot more celebrities rocking their natural skin tones, which is awesome! The Oscars had the most beautiful actresses rocking their own skin tones. They looked very healthy and had a glow too and it wasn't orange! I hope it spreads. I hope that people start to realize how silly they look with a sunburn or a bad spray tan. Maybe someday soon, people will mark the change from tan is cool to pale is beautiful by saying, "Anne Hathaway showed up to the Oscars pale and people thought it was beautiful and stopped tanning.", the way they do about Coco Chanel showing up tan after vacation and then everyone wanted a tan as the start of the tanning craze. I am so sick of hearing about Coco Chanel...
For the record, I am glad that lady's salon closed too. I would love to see them ALL close. I realize those people are trying to make a living, but I don't agree with how they are doing it. It is really hard to convince people to stop doing something that they want to do like smoking, drinking, or tanning. But, we need to keep trying. I haven't always had the guts to tell someone to their face that they need to stop tanning. Mostly because I don't want to be the lady that everyone stays away from, that is a party pooper. You know a busy-body? Not what I want to be know for,but I would not mind being know for fighting melanoma. I do think that if my Kevin can stand up and say what he feels, I can too. I am sure that lady was shocked to hear him say what he did about her former business, (in a job interview!) but we need to let people know how we feel and not keep quiet. We need to keep fighting melanoma. I told Kevin how proud I was of him and I told him I know that Briana was proud of him too. (And probably laughing because he had the guts to say what he did!)
So, in honor of my wonderful man, I have created the Stand Up To Melanoma Challenge. I challenge you to stand up and educate someone, even though you may not normally speak up. I am challenging you to do something to educate, make a video, write your state reps, talk to a school, make a poster, talk to a teen that is obviously tan, or tell someone they have a funny mole on their back. SPEAK UP. The chances that they listen to you are going up with all the new cases of melanoma every day. The chances that they may know or end up knowing someone that has melanoma, and hopefully with your educating it won't be them. Maybe you will be that one person that changes their life.
I will be accepting this challenge too. I will not be so quiet about it in public as I have been. I don't want any of you to do anything rude, or dangerous. We will get our point across much better by remaining calm and cool, stating facts and if they don't want to hear it, move on. They will be more responsive if you aren't in their face yelling. I know we are all passionate about raising awareness and everything and we all have a lot of emotions running crazy, but let's do it the right way, even if someone makes you angry. Just know that you have planted a seed. They will think about it when they lay out or use a tanning bed. We WILL change the world's way of thinking someday. In the meantime, it will take a lot of work. We can do it. I am doing it for my family and for my friends and myself. I am doing it for YOU.
I would love to hear your stories of educating! Please share them with me at mcollins0683@yahoo.com or if you follow me on Facebook at My Journey with Melanoma and look under NOTES and add your story in a comment.
I would like to say a special thank you to Kevin for always being my support and my best friend through all of this. You did something so amazing and I love you so much for it! Thank you XOXO. I would also like to dedicate this challenge to all of the caregivers out there that would also like their voices to be heard!
Happy Educating! Go spread the lotion and save some lives!
I just wanted to share these pictures again. It is not the usual pictures I like to take and share, but it is important that they are shared even though.
I look at these photos now, almost 2 years later and I feel the pain and fear all over again. I will never stop spreading awareness about melanoma.
I have come a long way since my diagnosis and surgery and I know my journey has just begun.
The first scar after original biopsy was taken
My leg 2 days post op
My message that I hope to send with these photos is....Don't tan. Ever. This isn't pretty.
Melanoma really does suck. It doesn't care if you are young, old, white, black, wealthy,or poor. It likes to sneak into organs like the brain, liver, and lungs, and can even spread to the colon.
There are many trials and many warriors participating in them in the hopes to find a cure and help others with a cure. We are hoping there will be a cure soon. I have lost too many friends to melanoma. That's not cool with me.
Lots of stitches
When I first saw my stitches I was shocked. They told me that they would be taking a biopsy 2 cm x 2cm and 2 cm deep. It was much bigger than that. I was lucky I didn't have to have a skin graft. I did end up with an infection in the incision. I knew I had one all along, but my surgeon kept telling me I didn't.
My leg 2-19-12
It did heal up and looked much better 10 months later. I still have the indent, but it isn't as deep.
Big indent
2 days post op, big indent
groin biopsy
So many stitches
After some of the stitches were taken out. (infected)
The groin biopsy healing
If you have a mole that has changed, gotten bigger, bleeds, itches etc. Go see a dermatologist. Please.
The last few weeks have been the toughest since I was first diagnosed. I have been trying to accept that we have lost some pretty amazing and young warriors lately. I have had a very hard time with that. It seems like one right after the other and I can't make sense of it really, but I am trying.
My friend's daughter Jillian, my friend Angi, and Jennifer, and Briana. All within months of each other. Each one fought with strength, grace and dignity. I was and am still in awe of each of these amazing women. They tried every trial, did every treatment, and most of all, they lived their lives to the fullest and never gave up. They did not let melanoma define them. They used it to help others, to teach us the importance of love and friendship. Out of all of these warriors, I only met Briana in person and actually was close with her.
I met Briana at a cancer group by my house called Gilda's Club. I had went and signed up the week prior, needing something to cope with my new diagnosis. But, I was disappointed to find out that they didn't have a group for skin cancer, or melanoma. I decided to try the Wednesday group and posted about it on my page My Journey with Melanoma. Briana commented that she was part of the Wednesday group and she was excited that I would be there since she felt alone being the only one with melanoma! I was so excited to meet her!
I will never forget the first time I saw her. I walked in, and I knew immediately that it was her. She had the biggest, most beautiful smile I have ever seen! She gave me the biggest hug and I felt such a connection with her. It was like I had always known her. We were soul sisters.
We went to the Wednesday group meeting for awhile and then we both decided that it wasn't really what we wanted to do and continued our friendship outside of the group. She went to one of my daughter's dance recitals and we had so much fun! She met my family at a melanoma walk we did together in October, and my daughter and her became very close too. My daughter accidentally called her Banana one day and she said, " Well,
if I am a Banana, you are an Apple!" Then somehow I became Melon. :) Haha! We would meet for lunch or text back and forth. Our favorite was to just text, "I love you. That is all." If I asked her about her treatment, she would talk about it briefly and always would say, "It's no big deal." She just amazed me. She never let melanoma get her down. She was not about to let it mess up her plans. She didn't dwell on it, or complain about it. We didn't really even talk about it much. She just did what she had to do and moved on. She just lived. And she had a lot to live for!
She was planning her wedding to the love of her life and she was missing him because he was finishing college in Massachusetts. She was so in love and if you brought up his name, or the wedding, her face would just light up!! The wedding was absolutely beautiful! She was glowing and so very happy. There were butterflies and Gerbera daisies everywhere. She loved both. She was very tired at her wedding, but she didn't let it stop her from celebrating. I was so happy that she was so happy.
She was still doing a trial at U of M and she was enjoying married life. We didn't see each other for about six months, and we decided we should meet for lunch. I was shocked and almost didn't recognize her. I had known that her last trial had ended and she was waiting to get into another one. She did get into the trial, but the side effects were too much. She was sent home on hospice 2 months later.
She died on Valentine's Day. I thought I was prepared. I don't think you can ever be prepared to say goodbye to someone you love. I went to see her twice while she was at home on hospice. It was incredibly hard to see her like that,but I am glad I went. She saw me get upset and cry and she whispered "I love you." and I whispered, " I love you more." The last time I went, I blew her a kiss when I left and she blew one back. That is the last time I saw her. I never thought that this would happen. I never thought she would not beat this, and I know she didn't either. But, she was at peace at the end that this is what she was faced with. She knew she would be going to heaven and that there was nothing else she had to do. No more pills, no more chemo, no more radiation, no more doctors, no more cutting, no more pain. She could stop the battling and be at peace.
Today is going to be really tough. I know she is looking down on all of us and she is holding our hands. I know that she will be with me today and always. She was an angel her on earth and I know that she has a very special job now. I will always remember her big beautiful smile and her easy going personality, her strength, her sweetness, her beautiful blue eyes. I will continue to fight Briana. I will never, ever stop. You taught me not to give up. I am so glad that you were my friend. Fly with the angels honey. You got your butterfly wings now.
