Things I'm Afraid to Tell You

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I was reading one of my new favorite blogs tonight, Whispering Sweet Nothings, when I was inspired to write a similar blog post. Shane talks about how as bloggers we tend to only show the world the best of ourselves. We sugarcoat shit. Sometimes we say what we think you want to read. Sometimes we act like things are more perfect than what they really are. Sometimes we act like we aren't afraid. Sometimes we preach. Shane was brave enough to share some of her most personal feelings, so I thought I would share a few secrets of my own that I may hold back. (Some because I don't want a full inbox of hate mail! :0)

 I still miss the worry-free feeling of sunshine on my skin  I grew up at the beach. Many of my childhood memories involve a beach. Almost every major vacation involved a beach. The first summer being back home after being diagnosed with melanoma, I didn't know what to do with my free-time without spending my days at the beach or in my parents pool. I still miss getting up fairly early, grabbing a book, a bottle of water, and maybe some SPF for my face and shoulders, and not worrying about anything else until it was time to head inside many hours later. There were no big hats, umbrellas, select hours I should be in direct sunlight, or the absolute fear of a sunburn. 

I really do think your fake-and-bake tan looks horrible and cheap. I'm not just saying that because I have melanoma and can't get a tan. I truly, honestly, most definitely think that your skin should not be that shade of leather.

I had to remove myself from 2 different melanoma groups. I try to be supportive of everyone. I have a true desire to be a supporter of others and meet as many folks as I can within the melanoma community. However, I came to the conclusion that I could not completely obsess over this cancer. I couldn't have my Facebook newsfeed be nothing but articles about melanoma, latest updates about melanoma, and melanoma patients fighting with each other about something the other one said. I needed a break so I removed myself from two of the groups I belonged to. 

I do not regret removing myself from melanoma groups. I love my Molemates. I cheer with them when they get great news, I cry when they receive the news none of us want to hear. Having said that, I also have to look out for my emotional well being. Removing myself, deleting certain Facebook friends from my personal Facebook page, etc,  was what I needed to do for myself. Despite the hate mail I received it wasn't an attack against anyone else. It doesn't make me any less of a melanoma supporter. It doesn't make me a bitch. It makes me a girl who knew I was letting the internet have too much control over my emotional health. If you still think that makes me a non-supportive bitch, oh well.

I sometimes don't wear sunscreen. Before you freak out, read what I have to say. My face products have sunscreen in them. My hand lotion has sunscreen in it. I work in a basement of a hospital that has absolutely no windows. I walk outside for just moments to get to and from my car. I'm usually in long pants/skirts and a long sleeve sweater/cardigan. (It's negative 20 degrees in there, always.) My skin is always covered. If I spend any additional time outside, or know that I am going to spend additional time outside, I always wear sunscreen. I have multiple bottles in my purse. Don't shoot me. 

I become such a brat before oncology appointments. I'm not lying when I tell you that you're better off just not to talk to me the day I get scans. Just wait until I receive the results. Scanxiety makes me such a little brat. You've been warned. (And I apologize now.)

I am curious about getting a spray tan. A local spray tan salon here in Roanoke recently sprayed the Miss Virginia candidates. I saw her post on Facebook and mentioned that it would be great to interview the owner for my blog. I'm curious how she got into the spray tanning business and if there was a reason behind it. Since then I've been wondering if documenting a spray tan would be good material for my blog; however, I think it totally goes against the message I'm trying to send: Embrace your natural skin tone and look pretty doing it! (My decision about the spray tan still hasn't been made. It would be a one-time thing.)

I hate being in the room with a lot of people when I get scan results.  Receiving bad news is terrifying. Having to look over and see how your family is reacting to bad news is heartbreaking. I never want my family to experience that again.

I get a little peeved when people say I have skin cancer. I have melanoma. It's aggressive, deadly, and a sneaky little bitch.

I never respond to blog comments. But it's not because I don't read them or don't want to respond! It's because I don't have the slightest clue how to do so! I try, but I always fail! *I am going to work on this and figure out how to respond so please make sure you sign in with your Google account or leave an email address where I can get back in touch with you!!!!*

When are we going to start trying for babies?  Please, why do people still think it's OK to ask that? (This is now my promise never to ask anyone else that question ever again.) I've always wanted to be a mom. I think I grew up knowing that was the one role I most definitely wanted in life. When the doctor says it's OK, if the doctors says it's OK, I pray there will be babies. And trust me, I'll annoy you so much with pictures and posts, you will wish you had never wondered when we'd have kids.

I don't care that you got a sunburn. Don't worry about what I'll think.  Worry about reapplying your sunscreen next time.

I love my 'real life' more than I love my melanoma blog.  I know that I'm pretty much the crappiest blogger lately. I post once or twice a month. I don't update you on the latest drugs, the most recent articles, I don't share like I used to. But here's the thing: I work full-time for a hospital in a job that leaves me tired and sometimes grumpy. I'm a newlywed wife who actually likes her husband, I'm a step mom to a kid we see for 7 days and miss for 7 days, I babysit 5-6 nights a week during the weeks we don't have my step son, I enjoy cuddling with my dog and reading some silly romance novel. I am enjoying my life. I have melanoma. I'm thankful every single day that Melanoma is not my life.

My melanoma blog I'm denying saved me during my darkest days. I didn't want to talk about the seriousness of what I was going through. I didn't know how to tell people without downplaying it or making a joke. I was completely shutting down. I am so thankful my mom recognized this and advised me to write. She saved me from a severe depression and many hours in therapy.

I'm already fearing the comments I'm going to get about sunscreen. If a body part is exposed for more than 10 minutes per day, it has sunscreen on it. I promise.

What are some things you keep to yourself?

*Although Shane doesn't have the slightest clue who I am, thank you, Shane, for inspiring me tonight.*

Words From a Friend

Sometimes I receive emails from people that I automatically know I'll become friends with. This was one of those situations. Having read her story, I knew that it was one that needed to be shared with all of you.  I'm so thankful she agreed to let me share it! So please, meet Chelsea, and share her words with someone who needs to hear them.

 "When I ran across Chelsea’s blog, I knew I wanted to know her. You see, not only do Chelsea and I share the same name, we also share an unfair diagnosis, which for both of us, is oddly in the same spot on our backs. I saw the picture of Chelsea’s scar that looked exactly like mine and felt an instant connection to this stranger miles away. When she asked me to share my story, I was a little nervous, because before now, I’ve never put it on paper. The feelings of it, well, they are just overwhelmingly strong, but the truth is, it needs to be told.

I’m one of the lucky ones, they say.  I never had to undergo chemo or radiation, and all my lymph nodes are still in place, but the truth of the matter is that melanoma changed me completely.  I was diagnosed at 18 during my freshman year of college.  The year prior was full of events that required me to be in evening gowns. There was prom, then the yearly pageant my school held, and don’t forget about those awful vocal music dresses that surely looked better on me when my skin was tan. Those moments in a tanning bed, defined my future.  While my friends were vacationing during Spring Break, I was undergoing a wide excision surgery to remove six inches of skin on my back all the way down to the muscle. This surgery was my cure, but it wasn’t completely healing, because the emotional scar runs a bit deeper and has lasted far longer.

The misconception associated with the word melanoma is that it will simply be cut out and everything  will be fine. I can’t tell you how many of my friends spoke those exact words to me when I shared my diagnosis with them.  Quite frankly, until I had my doctor tell me that there may be a chance that I could only have five to seven years left to live depending on my test results, I didn’t understand the severity either.  My friends couldn’t understand the situation I was in and it wasn’t because I had surrounded myself with people weren’t able to feel empathy; it was because they simply weren’t educated.

My family, they became my saviors, the people I laughed with to distract me from the constant terror I felt in my stomach, the people who held me when I cried, and the people who found strength  for me when I couldn’t find it in myself. In fact, it was my mom, who saved me. She was the one who had noticed the mole on my upper back that had gradually became dark black and she was the one who called me with the information from the doctor of my diagnosis. Often times, I still wonder how she found the strength to call me, her only daughter, to tell me I had cancer.  My melanoma diagnosis didn’t just emotionally scar me; it scarred every person in my family.

Life after melanoma is different to say the least. I’m far more cautious and I’m often fearful of reoccurrence. For the rest of my life, every six months, I will visit my dermatologist. I sit undressed in a brightly lit exam room while my doctor goes over every inch of my skin. These checks, more often than not, end with a biopsy of a something that looks suspicious leaving an open wound on my skin that takes weeks to heal. I then prepare myself to tell my loved ones that we are, yet again waiting on pathology reports. The chance of reoccurrence for me is 2% and while that may seem like a very small number, it is actually quite large in relation to melanoma.

I never dreamed that before I graduated college and said I do, I would be a cancer survivor, but it is my reality. I often have to remind myself to slow things down because facing a diagnosis that could have ended in death caused a horrible sense of urgency for me. Sometimes I have to take a moment to remember that I don’t have to live life so fast because God has given me more time and a chance to leave a legacy. I wasn’t lucky, I was blessed and I feel strongly that I am meant to educate others on how to care for your skin.  Unfortunately, I wasn’t educated on the effects of tanning, but don’t let that be your excuse. Don’t be like me. Your desire shouldn’t be getting tan. Your desire should be to stay alive. Educate yourself before you find yourself in a situation that educates you."  

Please take Chelsea's words and educate someone else on the true dangers of tanning. A big thanks to you, Chelsea, for sharing your story with others! I know it's scary to put yourself out there, but by telling your story, I know you'll save lives. XOXO

Worth 1000 Words

"You look good today, but underneath it's not pretty.

Use sunscreen, protective clothing, and common sense."

The Rules Do Apply

 

http://www.roanoke.com/living/health/camardi/2152898-12/a-shadowy-health-danger-lurks-in-the-sun.html 

My co-worker was reading the local newspaper this afternoon during her lunch break when she came across this heartbreaking letter to a local doctor. Apparently the young lady mentioned in the article had a biopsy of a mole years ago, continued to tan despite knowing the risks, and died at age 33 of melanoma. 

Whoa.

The letter left me feeling a lot of emotions: sadness over this loss of life, frustration that this may have been prevented had she learned with the early biopsy, and anger that there is so much more that we need to do to make people aware that melanoma is not just skin cancer.

I'm trying to put myself in the shoes of someone who had to have a biopsy, everything came back fine, and I was able to continue on with my life as before. Would I have embraced the pale skin? Would I have refused to step foot in the tanning bed again? Would I consider buying stock in sunscreen since I buy so much of it? Of course I don't know the answer to that. I would like to believe I would have had the shit scared out of me by the experience and by my doctor so I would have made the necessary changes, but who really knows the answer? Considering how uneducated I was on the seriousness of melanoma, maybe I would have been just like this girl. Maybe, I, too, would have believed the rules did not apply to me.

Dr. Camardi responded to the letter perfectly. He expressed his sympathy, yet he used this opportunity to educate our little town on the seriousness of melanoma. Dr. Camardi fully explained the ABCDE's of melanoma, and states: "The challenege in all of this is to 'get it right' and biopsy only the cancer. Frankly, that's impossible. I'd rather do 10 normal biopsies to find one melanoma and treat it at its earliest stage."

Yes, Dr. Camardi, I agree! As a patient, I would rather have 10 brand new scars if that means we catch the one melanoma in the earliest possible stage. Don't get me wrong, I don't like scars--didn't even have any before all of this melanoma craziness began--but scars beat cancer any day! 

While it is important to biopsy any suspicious mole, we have to agree with Dr. Camardi, prevention is the best medicine. Lather up the sunscreen, seek shade between the hours of 10 and 4, and throw on a fancy hat and some big shades! No one is saying you have to avoid the sunshine. We just suggest that you safely enjoy it!

This young lady, this free spirit who loved people and loved life, was obviously loved by the author of this letter. While it hearts to think of another life taken from this cruel disease, it breaks my heart for the author who is so right when he/she wrote: "She just did not have to die so young."

Sad.