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.*

The Negative Committee

 

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We all have them, The Negative Committees, that sometimes take up more time than they are typically allowed. Usually my Negative Committee only pops up right around scan time. I acknowledge it and I move on. I am normally good at pushing aside the worries and getting back to my MelaNormal life. I feel like living my life is one of the best ways to get revenge on melanoma. It's my way of telling melanoma it isn't winning. Lately, it's been hard to keep the anxiety away. I'm fine as long as I'm busy, but it's at night when I'm sending my good juju towards my friends that The Negative Committee begins to show her ugly face.

I know why. 

When I was first diagnosed with stage III malignant melanoma, it was a complete surprise. I was not expecting one little mole to turn my entire life upside down. Even after the first surgery I didn't know what I had ahead of me. Through my research and meeting friends online I quickly realized that melanoma is not going to be something I heal from and forget. It's always going to be there. There's always going to be the need for observation. I will forever be a cancer patient. That took a long time for me to grasp. If I'm being honest, sometimes I still don't think I totally grasp it. Thankfully I get to live my life in a way that doesn't force melanoma to be on the front burner anymore. I get to be a healthy daughter, a silly girlfriend, a crazy live-in-girlfriend-not-yet-stepmom to the kiddo, a loving sister (HA! I try, sissy & baby sis!), etc. I am one of the lucky ones.

So, why is the Negative Committee back in session? I am far better off than others! I've hesitated blogging about this, so try to understand...The Negative Committee has been on overtime in my head lately because  seeing my friends advance to stage IV has been very difficult. I'm scared for these people. I ache for their families. And then, late at night, I see myself in their shoes.

People sometimes question why stage III patients receive CT scans so often. This year I saw how important those scans actually are for us. I witnessed how quickly one can go from No Evidence of Disease to stage IV.  Perfect scans, clear for 2 1/2 months, then boom, melanoma in multiple locations. It happens so quickly.

It terrifies me.

I'm not uneducated anymore. I can't hide behind my "it's just skin cancer, it's OK" attitude. I know what it can do and how quickly it can do it.

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Some would tell me that one way to avoid this added anxiety would be to take a step back from all things melanoma, to put melanoma behind me. Well, that's what people don't realize. These people are my friends. Selfishly, their situations terrify me. More importantly, their situations break my hearts because of the ways it changes their lives! These aren't statistics I'm reading about, these are my friends. I cheer for them, I cry for them. I'm going to celebrate with them when they receive the news that they are once again showing no evidence of disease. (And it will happen, girls.) It's that simple.

The Negative Committee has officially outstayed her welcome. Maybe I do need to stop being afraid to dream of No Evidence of Disease

...for all of us.

"This I Can Handle."

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Fear has the ability to paralyze you. You want to protect yourself. You don't want to tempt your body into the danger zone. You put yourself into a bubble because you are afraid of what will happen if you pop that bubble. To take yourself away from your safety net? Far too risky.

Fear paralyzes you, emotionally and physically...

Unless you stand up to it.

Today I had the pleasure of working with a woman who is celebrating her 10 year breast Cancer-versary. For the sake of her privacy, let's call her Mary. People with cancer tend to automatically click, this case was no different. This woman knew my story through the grapevine, but I had not heard hers. It is a bit odd how similar our stories are despite our different types of cancer. We actually even had the same surgeon--he specializes in breast cancer and melanoma. Mary and I were discussing our issues following the lymph node dissections and the aftereffects that the surgeries have had on our bodies. Mary asked me if I use my arms in the way that I did Pre-Melanoma. I explained that I ignored my original oncologist and still use my arms and that I am actually going to the gym to try to regain the muscle that I have lost in the past year. I never know how people will respond to someone going against a doctor's orders, but Mary disobeyed her doctor too.

Mary shared an emotional memory with me today. She told me, "I remember going for radiation and the doctor said, "this may hurt. I am going to stretch your arm out but only stretch it as far as you can. It may be painful." Mary stretched her arm to a fully extended position, looked at her doctor, and said, "No. Pain is being told I have cancer. Everything stopped. Everything. That is real pain."

Mary looked at me with tears in her eyes and said, "Now I go to the gym 3 times a week and lift weights. I use those arms. That is not pain to me. I have felt real pain. This? I can handle." 

Fear, if you let it win, has the ability to stump you. It will cause you to stop living life the way that you used to live because you are terrified of jeopardizing your current healthy state. You start to think in terms of the next day, but God knows you don't plan for the next year. You are scared to make permanent plans because you don't know how you are going to feel, you don't know where you are going to be, you don't even know if you will be. Finalizing future plans is a risk because your future is so unknown.

I am talking about myself. Ask me to make a serious permanent decision and I will wiggle my way out of it. It terrifies me. How can I buy a house if I don't know if I am going to be healthy in 3 months? How will I have a baby (far in the future!) if I don't know what the scans will show in 3 months? Should I even have a baby? Why should I sign up to go back to school if there is a chance I may have to drop out because Melanoma shows its face again?

It will keep you up many of nights just thinking about those things!

I shared some of these fears with my friend Max over green beer on Saturday night. He asked one question: "Are you going to live like you are dying?" Max did not ask that question in the Tim McGraw ride-a-bull-&-go-sky-diving type of way. He meant, am I going to live day by day, not making any permanent decisions all because melanoma may show up again?

I tried to defend myself. I blurted out the statistics. I talked about the 2 more years of chemo sessions I have. I dropped names of Molemates who we have lost this year. Again, Max asked, "Are you going to live your life or are you going to live like you are dying?"

Am I?

I have felt real pain. I have had, like Mary shared, my world come to a halt. I know what it is like to actually have to face the fact that I may not survive this. I also know that I have opportunities that some of my cancer friends no longer have. I have the opportunity to not only exist, but I have the opportunity to live.

It is time to stop holding myself back just because I am scared of the future.


"I have felt real pain. This? I can handle."