A Stage By Any Other Name....Is STILL Melanoma

When I was first diagnosed with melanoma, April 2011, I was told by my dermatologist and surgical oncologist that I was stage 2a.  I had to undergo a wide excision biopsy which left me with a 7 inch scar on my leg that looks like a shark bite.  I had a lymph node removal and was sent home to wait for results and recover.  It was the darkest time of my entire life.  I reached out on Facebookland and through the internet, I was led to several of my now friends.  They really helped me through the darkness and have been supportive and understanding.  I was told with stage 2a, that I was good to go, since my surgery got all the melanoma and the lymph nodes were clear, but I couldn't help but worry that melanoma was lurking somewhere inside of me, undetected, and was not going to be found until it was too late.  I have struggled with this so much, that in June I went to see a melanoma specialist at the University of Michigan for a second opinion.  They read my original slides, and told me I was not stage 2a, but stage 1b.  It was hard to adjust to.  Mostly because, I had also been struggling with the fact that some of my new friends where stage 3 and 4 and were going through horrendous treatments.  Some had passed away.  I felt like being a stage 1 or 2 was not significant.  I felt like I had no right to say I was a warrior.  I felt guilty.  I was going to a cancer support group and I met one of my dear friends there, that is fighting Stage 4 melanoma.  She has gone through hell and she does it with such dignity and strength.  I felt guilty that she was going through so much, when I was told I was done and clear.  I felt uncomfortable at the group since I was not going through a battle like they were.  I felt like I didn't belong.  I couldn't imagine going through what my stage 3 and 4 friends were going through, and I was scared to find out someday. 

Then one day, I realized that it was MY feeling that way and no one was saying that my journey was any less than anyone else's.  No one was telling me I was not worthy of being called a warrior.  I was accepted as a stage 1 WARRIOR by everyone.  We are all dealing with different stages of melanoma and I don't mean statistical stages, I mean different stages, just like in life.  We are all somewhere different in our journey, and we come together and support and love each other, even though most of us have not met before.  And would not be connected without melanoma.  We have a bond that is like family even though I may not talk to every one of my fellow warriors, I enjoy knowing how they are doing and being part of their lives. Supporting the ups and the downs.  Mourning losses, celebrating milestones, and sharing experiences, joy, sorrow, and tears.  Hugs and many prayers pass over cyberspace between us.  I personally, have felt nothing but support, until recently.

 I have never been so hurt and disappointed, since joining Facebook, as I was yesterday.  I was mourning the loss of my dear friend's daughter, who passed away, by spending time with my daughter out of the house away from Facebook.  I knew that I shouldn't spend the day crying, and instead I should grab every opportunity to spend time with my loved ones. But, I did cry. We went to see Les Miserables, and I cried a lot.  My daughter was next to me and I know how precious that is.  We had a great time together. When I got home, I went on Facebook, and that is when I saw this:

"Today I am going to tick people off...just because I can...and because I am angry because we lost "___" to Stage 4 Melanoma.  My heart goes out to people who have been diagnosed with Stage 3 and Stage 4 because they have a REAL battle on their hands.  People with Stage 1 or 2 have very good odds of living a NORMAL and long life.  I resent the fact they continue to draw attention to themselves while the real warriors are fighting for their lives.  I resent it when Stage 1 and Stage 2 people compare themselves to late stage warriors when they haven't had to FIGHT.  I had to get this off my heart."

Wow.

I have a huge problem with this for so many reasons.  I believe in freedom of speech, and this was (purposely) put on her personal Facebook page and not on a group page for all melanoma warriors in the group to see it.  First of all, she started off by saying she is "going to tick people off...just because I can."  So she was upset by a fellow warrior passing away and decided to tick off people that love that young warrior, by cutting them down?  I am not only offended because of what stage I am, I am offended that she, as a supposed friend, doesn't care about anyone with Stage 1 or 2.  We didn't go through a REAL battle?  We aren't still going through a REAL battle? Hmm.

Second, we all know what each stage means, and we all want to be stage 0, 1 or even 2...and stay there!  But, we all know one loose cell and a stage 1 can become a stage 4 in a heartbeat  Does this mean that any one person is less important than another?  I agree that our stage 4 warriors are fighting for their lives and I HATE it. I understand that stage 3 warriors are in trials, hoping that they will become NED and never advance to stage 4.   I DON'T understand the resentment towards others because of what stage we may be.  I feel that hate like that is not good, ever.  We should be "stage-blind" when it comes to melanoma, because stage can change.  It is melanoma.  That alone is scary.    I thought this person was my friend, but then I find out that she looks at us all as a stage and that we are only considered warriors if we are a stage 3 or 4 in her eyes.   It is her opinion and unfortunately it has hurt a lot of hearts.  The comments that proceeded were many and they have since been deleted.  I tried hard not to let it get to me, but it did.

I think we all need to bond together, and especially at a time like this, remain positive and supportive.  Anything less is just destructive and hurtful.  We are all fighting the same beast.  It is laughing it's ass off because we are destroying each other with negativity.  We need to remember,we all have special things and special talents we bring to the melanoma table, and we ALL have times when we are frustrated and angry.  We may not always see eye to eye and we may decide not to like what someone says, just like a family.  But if we start destroying the family, what do we have left?

And I had to get THIS off MY heart.

My First TV Interview

I contacted a local TV reporter who I was "friends" with on Facebook.  I sent her a message asking her to do a story on melanoma during May, since it is Melanoma Awareness month.  I told her a little of my story and gave her the link to this blog and my facebook page, "My Journey with Melanoma".  I received a quick response and she said that she was going to start covering melanoma on the news tonight and that she was going to be doing their weekly Newsmaker show on melanoma.  Then, she asked if I wanted to be at their studio in the morning since the scheduled quest canceled.  Ummm, YES!!!!!!  I wouldn't have ever imagined that I would be doing something like this!  I was always the shy, quiet girl.  I am NOT a public speaker, but amazingly (right now anyway!)  I am not nervous!  I am just excited!  I just hope that I can remember everything that I want to say! This is such a blessing.

I am not the only melanoma warrior out there spreading the word.  My friend, Kerry of PrettyPale.org has been a huge advocate for melanoma awareness.  She owns Kspin Designs, which is a children's clothing boutique.  She is a melanoma survivor.  She is amazing! This whole month, she will be out there giving away free samples, and spreading awareness about melanoma.  She does this tirelessly!  She is giving pale is beautiful knew meaning!  Hopefully, someday soon, we will accept our natural skin color. 

Another friend of mine, Chelsea, has been spreading melanoma awareness by blogging on Adventures With My Enemy...Melanoma, doing interviews on HLN with Dr. Drew and again today on HLN.  She is Stage 3 and was diagnosed very young with melanoma.  She is in a clinical trial and is a true inspiration! 

Susan, from Jilly's Jems, which is a non-profit organization for melanoma research, is a mother of a young daughter, Jillian, who is Stage 4.  She makes and sells beautiful bracelets and prayer beads.  She also is an advocate for melanoma awareness.  The proceeds from the sales of Jilly's Jems is split.  Part goes to Melanoma research and awareness and another part goes to a scolarship fund that was set up for a local soccer club in Jillian's name.  The beneficiary is a child who can not afford to enter the program and this allows that child to play.  She is a "Mama Bear" and I had the pleasure of meeting her in February at a melanoma benefit for another warrior Eric, Stage 4.  What a wonderful person! 

Reverend Carol, of Melanoma Prayer Center and Melanoma Grief Chapel, is a source of wonderful information, wonderful advice, and wonderful support!  She is just wonderful!  She also writes a blog Attitude of Gratitude.  She is one of the first people I connected with during this journey.  She is not only informative, she is smart and compassionate.  She is there for all of us warriors and she is one herself.  Stage 3b.

There are many more warriors and many more spreading awareness.  There are many who are fighting the battle of their lives.  They might not look sick.  They might not have hair.  They might be very depressed with their struggle.  There are many who have passed away after long battles with the beast.  Some passed soon after being diagnosed.  In the past year that I have been diagnosed, I have known of too many.  My goal by doing this TV interview is that with May being Prom season as well, and a lot of teens are tanning to look good in that prom dress.  I want to tell the dark side of tanning.  You may look great with that tan, but that tan will catch up to you someday, probably when you least expect it.  You can tell yourself all the things I told myself.  "It's just skin cancer", "They will just cut it off, no big deal". "I never burn, I don't have to worry."  ALL FALSE!!  I hope someday that there will be a cure for melanoma.  Right now there is not.

Please protect yourself and your children!  Wear sunscreen when you are outdoors and avoid peak times between 10 am and 4 pm.  Reapply sunscreen every 2 hours.  You should also wear sunglasses, as melanoma can attack the eyes.

Some statistics of melanoma:

         Tanning in a tanning bed just once, increases your chance of melanoma by 75%.

         Melanoma is the fastest growing cancer and the most common cancer in 20-29 year olds.

         If caught in the earliest stages, melanoma is entirely treatable with a survival rate of nearly         100%. If untreated and allowed to spread, there is no known treatment or cure.

         One bad burn in child hood increases your risk of melanoma.


         One person every hour dies from melanoma.

         Bob Marley died of melanoma, that started in his toe.  He was 36 years old.

DON'T BECOME A STATISTIC!  I will go tomorrow and speak for those that aren't here with us any longer.  I will speak for those that can't.  I speak for all of us affected by this horrible cancer.  I speak for the Samantha's, the Miranda's, the Eric's, the Keri's, the Kitty's and for all the melanoma warrior angels that have battled with such strength and grace.  I speak for the Briana's, the Eric's, the Jillian's, the Grace's and the Steve's that are battling to live.  I speak for all the caregiver's, parents, siblings, friends, spouses and children that are touched by this.  I speak, and you can too!