Tuesday, November 27, 2012

Prayers for Jillian

Last night I was catching up on Facebook and I heard some horrible news.  One of my friends posted that her 23 year old daughter Jillian, who has been battling stage 4 melanoma, was told that her treatment was not working.  They were recommending hospice.  I can't explain the exact feeling I got when I read that, but it was close to being punched in the gut and having your heart literally tear in half.  I know that her family, especially her mother, Susan, (who is the sweetest, toughest lady ever) had to have had that feeling magnified by a zillion.  I can't imagine.  I wanted to just hug them.  I wanted to take all the pain away and make the doctor find the cure for her.  I wanted to unhear the words.  

I have never met Jillian, but I feel like I know her.  I did have the pleasure of meeting Susan and her son Jonathon, at a benefit for another melanoma warrior last year.  She is amazing.  She has done so much for melanoma awareness.  She has fought hard to educate on the dangers of tanning.  She has a non-profit organization called Jilly's Jems.  She makes the most beautiful bracelets and prayer beads that I have ever seen.  The profits go to melanoma awareness, with a small portion going toward a local soccer club in Jillian's name, to help kids that may not have the chance to play. 

Jilly's Jems on Facebook 

I was so upset last night by the news, that I posted something on my Facebook wall, not just my melanoma page either.  I had taken to just posting things about melanoma, only on my melanoma page.  I was tired of people ignoring the posts and tired of people thinking I was losing it.  I didn't care last night. This is what I posted:   

              "I know a lot of you don't want to hear that tanning causes skin cancer, or melanoma. I know it is much more fun to lay out or go tanning to get that "healthy glow". There is NOTHING healthy about a tan. I will forever live with the fear that it can come back at any time, attacking my brain,lungs,liver. My heart is breaking tonight for a young 23 year old woman, who has been fighting so hard. She found out that the treatment has not been working. Please, for the love of God, DON'T TAN. It CAN happen to you."

Every time I think back to laying in that stupid tanning bed, I just want to vomit.  When will it stop?  When will people get it?  Tanning and overexposure to UV rays causes skin cancer and melanoma.  How many more people need to get melanoma before the world gets it? How many young lives need to be lost because they wanted that healthy glow?  This is why we in the melanoma world are so passionate about educating about the dangers.  Because no 23 year old woman should ever hear the words, "We have done everything we can."  No mother should have to see their child struggle with this horrible beast.  All for a tan.  

We can't change that we got melanoma, and we can't change the fact that once we were the naive ones that didn't want to hear that we could get skin cancer.  That melanoma was caused by the very thing we loved.  We are speaking from experience.  We are using our stories to prevent others from doing the very thing that gave us melanoma.  Please listen. 

Please keep Jillian and her family in your prayers as they continue on this journey.  I am still praying for a miracle cure, but if that is not what is meant to be, then we will accept that, as hard as it may be, as God's will.  

Susan, Jillian's mom wrote tonight, 

     "We aren't promised anything fair. It's just the world we live in. I hate it for Jillian, for me, for my family and all of you who are currently battling this dreadful disease. I am choosing to love Jillian through this, to have no regrets, and to move through this somehow. We all die someday. All of us. And some sooner than others. What we do with our lives today matters. I will make sure that Jillian's Journey will be shared, that your journey will be shared, and that the time spent here on earth matters and we make a difference. I promise you this."   

Love and peace Jillian and Susan (a.k.a Momma Bear)

Saturday, November 17, 2012

Dementia Sucks!

Dementia sucks!  Yes, I said dementia, not melanoma!  Surprised I am not talking about melanoma on my melanoma blog?  Well, there are other horrible diseases out there.  Dementia has touched me this week a couple of times. 

When I think about dementia, I think about my great grandma.  She had dementia. I was pretty young when she was alive.  She passed away when I was 19.   She couldn't remember short term memory stuff.  She did better with long term memory, but as it progressed, that even got bad.  I remember going to my grandma's on Christmas Eve, and my great-grandma would be sitting right by the door, waiting for my brother,sister and I to arrive.  She always said the same thing, every year.  First, she would say we were growing like weeds.  Then she would always ask me how my birthday was.  Our birthdays were 3 days apart.  She NEVER forgot to ask me that.  Sometimes she would ask me 10 times, but I always answered her as if it was the first time.  As bad as her dementia got, she never forgot my birthday.  She would call me by my mother's name sometimes, which was interesting, because my Mom used to go to her house when she was younger, with my Aunt.  I didn't mind that.  It meant that she remembered my Mom.  My parents had been divorced years by then.  She always loved my Mom and my Mom always loved her.  She was funny, and sweet.  I truly miss her.  I had a special bond with her.  Christmas Eve was never the same after she passed.  I hated going to my grandma's and not seeing her sitting there by the door waiting for us.  I was grateful that at the end of her life, I didn't see her suffer.  Not at first, but after hearing things from family, I was glad that I had the memories of her that I did, and not what I heard about her while she was in the nursing home.  I was devastated when she passed away.  She was the only person in my father's family that I really liked, besides my grandpa. The house was sold years ago, but whenever I drive by, I can still see the window where she sat when we drove up the driveway.  It was my favorite part of Christmas.

I recently went to dinner with my boyfriend's family to celebrate his mom's birthday.  She is 78.  She has dementia.  I haven't seen her in about 8 months.  When we got to the restaurant she looked different. I said hi to her, and she looked away. She didn't recognize me.  She has known me for 10 years.  We don't see her all the time, since we live an hour away, but it was sad.  I didn't get to talk to her like I normally would have, and decided to just be there and not push it.  It was awful to see how fast she is going downhill.  She looks in the mirror sometimes, and doesn't know who she is.  She looks at her own children, and doesn't know who they are.  She forgets that people passed away, and when she is told, she mourns all over again.  I can't imagine what she is going through.  Her daughter, lives with her and cares for her 24/7.  She is AMAZING.  I know it is taking a huge toll on her.  She has virtually no help from anyone else.  They have seen a doctor that specializes in geriatrics, and dementia.  He was great.  Now we have some plans together to help her and hopefully make things a little less stressful for everyone, especially her daughter.

On Thursday, I didn't want to go to work.  I was feeling like staying home and just crying my eyes out.  Sometimes, we just need a good, cleansing cry.  I am glad I did go for a lot of reasons.  It turned out to be a day I needed to be there.  Among other things,  a patient brought her husband in for an office visit that day.  She was talking about how stressful it is to be a caregiver for her husband who has beginning stages of dementia. She is exhausted.  She is angry.  She needed to vent.  I listened to her for quite awhile.  I sympathized with her situation and told her briefly about my experience.  She is seeking help to get them through this, which is so important.  She has her own experience with dementia with her brother and mother.  She said she really hates dementia.  I can relate. She seemed so happy to just vent.  To get it off her chest.  We hugged and she thanked me for listening. I have learned that sometimes all you have to do is listen and let people vent to really help them. 

I know I talk about melanoma a lot, but there are so many other diseases, and things that are not curable and are devastating families and lives all over the world, everyday.  I like to think that someday, we will find a cure for all the horrible things that are out there, like dementia, melanoma, cancer, Alzheimer's, diabetes, the common cold....

Wouldn't that be great?

I always remember my great grandma the most around the holidays.  Her birthday is still always celebrated on December 15th, followed by mine 3 days later.  And every year on Christmas Eve, I can still hear her ask, "How was your birthday?"  I sure do miss her.

                                       My Great-Grandma, Amelia, and I (taken in 1972)

Tuesday, November 13, 2012

Show Your Scars, Tell Your Story, Save A Life

     I read the BEST post ever as I was scrolling and catching up on Facebook and Twitter tonight!  My sister wrote, "Today I am thankful for my daughter's teacher who taught the kids about melanoma. This of course is very near and dear to me and my family ever since my sister was diagnosed with it. I hope that after this lesson kids will think twice about tanning and learn to love the skin they have."

                                                                BIG, HUGE smiles!! 

     I was doing the daily " I am thankful for_____ " on Facebook,and then I just stopped.  Not sure if it was just that I didn't have time in the morning to post it, couldn't  think of anything that wasn't being said by everyone else, or I just wasn't thankful for anything...(probably not the case!)  But, I stopped a few days ago.  Today, I really have something to be thankful for.  I am so thankful for this teacher for teaching about melanoma to high school students who don't want to hear that tanning is dangerous and can cause melanoma. That teacher spends every school day with these kids and what better person to teach them about dangerous things like melanoma, than their teacher!   Teenagers don't want to hear that something they like is bad for them, and most choose to do what they want, and ignore the facts, thinking "It won't happen to ME."  Well, all of us that are living with melanoma know that it CAN and WILL happen to you.  When you least expect it. 

     I have not spent a lot of time teaching my nieces about melanoma.  I don't want to lecture them.  They have seen my scars and they know what melanoma is and they know to protect themselves and not to tan.   I know that my sister has taught them well.  I know that my niece has spoken up several times in dance class, to tell the older girls that were going to tan for upcoming dances, about the dangers of tanning and about me, her aunt, who has melanoma.  She is my little melanoma advocate!  I know that my story has touched my family and has taught all us girls in the family to take better care of our skin and to STOP tanning.  I know that my story is reaching people every day.  It makes it all worth telling my story and showing my scars, that not so long ago, I was so ashamed of.  

    I am not afraid to show my scars, because they tell a very important story.  They are a part of me, and they make me stronger. 

My niece has a friend who has melanoma and she is not doing very well right now.  I remember when I was first told about her.  "Too young" is the first thing that came to my mind.  But, melanoma doesn't discriminate against age, skin color or social status.  It doesn't care if you are black or white, short or tall, male or female, 1 or 50.  It is pretty sneaky like that.  Striking when you least expect it.  

So to all of my fellow melanoma warriors....Don't be afraid to show your scars and share your stories.  You may never know who listens and you may not get to change everyone's mind about tanning, but you put the thought in their mind and maybe the next time they slather on baby oil to lay out in the sun, or go in a tanning booth, they might just think about YOU.  And remember YOUR story. And SAVE their life.  Just think about how many lives that my niece's high school teacher may save, just by educating about melanoma.  

And YOU can too.

Thursday, November 1, 2012

Not Playing the Blame Game

As October and breast cancer awareness month ends, November and  lung and prostate awareness month begins.  I just want to say that although breast cancer gets a lot of attention,  and that I have a bit of "Pink Envy", I do hope that all other cancers, including melanoma, are someday acknowledged as much as breast cancer is.  I want a cure for all cancers.   We NEED a cure for all cancers!

I haven't been on her much lately, but I wanted to share a few things :)

At work today, one of the other nurses told me that one of their patients was recently diagnosed with Stage 4 melanoma.  He is a middle aged white man, and he had a mole on his leg, just like me.  Groin biopsy with a lot of lymph node removes.  3 were positive.  He went through treatment, chemo and radiation....he just had a MRI and it is in his brain now.

I can't explain what it does to me to hear of a complete stranger being diagnosed with melanoma.  I wanted to just walk up to him and give him the biggest hug.  I saw him when he was leaving, and he looked pretty healthy.  I couldn't help thinking, "He doesn't look sick".  That is how the BEAST works.  On the outside you can look perfectly normal and healthy, and on the inside you can have tumors everywhere.  Not to mention the fear we hide on the inside that we hide.  People not getting that you are in a serious fight for your life, like when you have breast cancer, or lung cancer.  We don't always LOOK sick.  We don't always LOOK like cancer patients. 

I am pretty sick of melanoma right now.  I really,really, REALLY hate it.  So, if you think I am crazy for getting upset that you are sun-tanning, or sun-burning, then you really must not get it.  And you probably won't truly get IT, until YOU get IT.  It took me awhile to get THAT.   I have learned not to push it onto others.  I say what I have to say, and either they accept it, or question me about it, or they don't get it and do what they want.  It isn't my problem after I give them info.  If they want to continue to hurt themselves and risk getting melanoma, that is their right.  It still pisses me off though!

But I will get over it.

There are a lot of people that can't accept that it is harmful to tan, or burn.   I recently lost my "best friend" because of my melanoma.  She thought I blamed her for getting skin cancer, because I used to sunbathe with her when we were teens, 20 some years ago... How ridiculous.  I downplayed my cancer when I first told her.  She had a lot going on with her son who has cerebral palsy and was ill for quite some time.  I spent most phone calls comforting and listening to her.  Inside I was battling depression and fear.  I was a wreck, but didn't want to impose that on her.  We talked less and less, the more I went through the after math of my diagnosis.  Anything I did say, she didn't quite get what I was talking about, so it became easier not to mention it.  It made me hold a lot inside, which was really not good.  I wanted to talk about it, but anytime I did, I just felt bad because, it seems like no one wanted to hear about it, unless they were personally affected by it themselves.  ( So thankful for my melanoma peeps on Facebook and Twitter! xo).  I assumed that since she was my "best friend" she would feel the same way my family did.  I felt like people thought I did it to myself because I tanned too much. I felt like they blamed me for my melanoma.  I blamed myself for it, why shouldn't they?  I needed the ones close to me to confirm that it was going to be okay.  That I wasn't a complete idiot for tanning so much I got 2 types of skin cancer.

 I didn't have many people outside my family that were really understanding and there for me.  She should have been there for me.  She wasn't.  A little over a year after my surgery, she posted on Facebook that she went to the beach (for 6 hours I found out late between 10-4pm. We all know that is the worst possible time to go!)  and that her and her 2 very fair skinned, young, daughters were "as burnt as lobsters, lol!"  Well, I was really upset by that to say the least.

She didn't get it.  Her oldest daughter who was 14 at the time, didn't get it.  Her friends (who I don't personally know and are VERY rude and verbally abusive and threatening, by the way)  don't get it.  In the interim I was verbally abused by her and her friends, and I was told that I was wrong by a mutual friend of ours.  The entire time, I held my head up and decided that if she really wanted to end the friendship, then that is what we would do, but I was not going to change the way that post made me feel.  If she would have held a gun to her children's heads that would not have felt any different to me than what she did.  She let her children get burned badly when she knew what had happened to me.  Her "best friend".  Who the hell was I to think that she would care enough to protect her very own children from the same thing that her "best friend" was fighting.   It was a very sad way for a 30 year friendship to end.

I don't play the blame game anymore about me getting melanoma.  It doesn't get me anywhere.  I have decided that melanoma has taken enough from me.  I am not going to live with guilt about choosing to tan, when I didn't know it was hurting me.  I am in a much better place after letting that guilt go.  I focus more on the fact that because of my melanoma, my daughter will never set foot in a tanning bed.  EVER.  That alone makes it worth it.

I hope you all never have to know what it feels like, or to have to try to explain it to someone else.  I hope that you never have to walk in our shoes.  It is not fun.

You don't just cut melanoma off and move on.   It is not JUST skin cancer.

I am doing well today.  I am over 1 1/2 years post melanoma surgery.  I remain stage 1 NED.  I know everyday that it could change.  I am busy living life, and not looking over my shoulder (as much!) thinking that I am sick and no one is doing anything about it. At stage 1, they don't do bloodwork scans, or even xrays.  I don't even have to see my oncologist for follow ups.  I am pretty much left to myself.

But I am happy, and celebrating life.

That is what it is all about.  Not letting melanoma win.