Melanoma...the Connection with Family and Friends (Part 1)

It's been a while...I know.  I've been avoiding my little blog again.  It's been a really rough couple of months in melaland.  On December 29th, Jillian Hayes Wagner passed away after a heroic battle with the beast.  She was 23, and one of the most courageous warriors I never got to meet.  We've lost several more since then, and two of our molemates learned recently that there is nothing more for the doctors to do.  One just returned from her honeymoon to discover that in spite of very recent clear scans, her melanoma has spread.  Another one of my favorite people has tests this week to determine if her melanoma has returned, and I have an upcoming MRI that, given what happened the last time I had an MRI, I am completely freaked about.  The good side of these scans is that if we don't know what's there, we can't fight it. Anyway...I digress.

After my recurrence in October, I heard from more than a few people that my post had a big impact on them.  Someone used the word powerful.  But it occurred to me that what was far more powerful than anything I could talk about, was the effect my diagnosis has had on family and friends.  There are so many people who still tan, and I think that maybe if they knew how hard a melanoma diagnosis would be on their family...they would stop.  So, I e-mailed my family and a few other people I'm really close to and asked if they would be willing to put into words how they felt.  I knew it was a difficult thing I had asked them to do.  I've gotten some responses.  My family has struggled mightily with this. I've been told it was a very difficult process to put those feelings into words.  I just hope that it's as hard for people who are still tanning to read when they realize that this is probably just how their family would feel if they were diagnosed with melanoma.

From my sister, Claudia:

I remember that day like it was yesterday.  I got off the plane at O’Hare and turned my cell phone on.  I instantly saw that I had several missed calls and text messages from my sister, Donna.  All of them just said, “Call me.”  I thought to myself, “This can’t be good.”  I was standing in baggage claim when I called her and she told me what was wrong.  “I have melanoma and I’m having surgery tomorrow.”  I could hear in her voice that she was being positive, so I was too.  I didn’t know anything about melanoma except that it was skin cancer.  “OK” I thought.  “So they’ll take it out. “

I spent that evening on the internet learning about melanoma.  I was in tears before long and decided not to get ahead of myself so I stopped reading.  What I did learn is that melanoma is almost always caused by exposure to UV light, in other words, tanning: indoors or out.  I had just spent the last week laying on a beach in Florida and had to show up at the hospital the next day with my “fabulous” tan.  Although I had used sunscreen all week, I had intentionally been exposing myself to the sun.  I felt like an idiot.

That was a year and a half ago and so much has happened since that day.  If you read Donna’s blog regularly, then you know that Donna had the melanoma removed from her back (approximately the size of a baseball), and 29 lymph nodes removed.  Only one node was positive, but that one node put her at Stage III.  Not a good place to be.  She went through a year of Interferon treatment.  Although she would say she tolerated it pretty well, there were days she was exhausted, dizzy and nauseous, and she had a constant headache.   Every day that I talked to her and learned what she was going through tore me up.  Do you love your sister? Brother? Parent?  Spouse?  Friend?  Then you know that you never want someone you love to go through anything bad.  And there were some bad days.

A couple of months ago Donna went in for a routine scan.  There was something on her gall bladder.  A PET scan revealed a likely tumor.  It was melanoma.  And now Donna is stage IV.  She recently started a new treatment (Yervoy) and I pray to God it works.  

Soon after Donna’s diagnosis, I went to the dermatologist for my first overall body check in years, and she asked if I had ever had a bad sunburn.  “Of course, I grew up in the 1970s!  We used to sit out in the sun with baby oil and tin foil!”  I also used tanning beds occasionally.  I thought they were supposed to be SAFER than being out in the sun.  Back then we didn’t know that UV light might one day kill us.  Now I know more about melanoma than I ever cared to.  Now I know better.  There is no such thing as a safe tan.

Donna asked me to write about how her diagnosis has affected me.  There have been good things to come from her diagnosis which are easy to write about.  Donna and I were close before but now are closer than we’ve ever been.  The inner strength she has displayed has been inspirational to all of us: family and friends alike.  My quiet sister who doesn’t like public speaking stood in front of the Chicago City Council and told her story.  She helped Chicago pass legislation banning minors from using tanning beds.  Her courage and positive spirit have been an amazing influence on me.  To say that I’m incredibly proud of her is the understatement of the century. SHE ROCKS!  Donna has educated me on the dangers of UV exposure and I’m passing that knowledge along to my friends and family.  Please believe me when I say that it could be your sister next; or your mother, your daughter, your brother, your husband, your father or your son.  Or you.

The horrible part of Donna’s diagnosis is just that: horrible and inconceivable.  I know this is going to be hard for Donna to read.  It’s hard for me to write.  Actually it’s excruciating and I’m crying as I type.  I’m scared.  My sister has Stage IV melanoma.  Google it.  The prognosis is not promising.  What if it was your sister with Stage IV melanoma?  What if it was you?  All for a tan?  I’m hopeful, as I know Donna is, about new treatments and longer survival rates for Stage IV melanoma patients.  HOPE.  I just have to HOPE! 

Believe me I get it!  I used to love the way I looked with a tan.  But looking good is not worth the price my sister has paid.  If you want recommendations on self tanners and tinted moisturizers, let me know.  I can still look “healthy” and be safe from UV damage.  So can you.

Donna and I have a younger sister.  Our maiden name is Hicks, and we refer to ourselves as the “Hicks Chicks.”  We’ve joked about being together as 80-something grandmothers doing water aerobics together and laughing about our sagging skin.  But there are three “Chicks” in that vision of the future.  I’m scared to lose my sister.  I haven’t said that to her because I’m always positive when we talk.  But she’ll see it now.  And I’m saying it to you.  I’M AFRAID I’M GOING TO LOSE MY SISTER.  And that is unimaginable to me.  I don’t know how to live in a world without my big sister in it.  I don’t want to know.

The best way that Donna’s melanoma diagnosis has affected me is that my entire family has now begun regular skin checks.  Both of my children have had suspicious moles removed (benign, thank God).  And they’re on the lookout for changes in their skin.  I, too, have regular checks and just recently saw a fabulous dermatologist who Donna recommended.  After a very thorough exam, the doctor sat down and asked me about a spot on my face, just below my left eye.  I thought it was an “age spot” from being in the sun.  I’ve been looking for products to fade it.  The dermatologist thinks it may be lentigo maligna, a precursor to melanoma.  She will look at it again in 8 weeks and will then likely biopsy it.   Let me say that again.  My doctor thinks I may have Melanoma in-situ on my face.  In-situ is Stage 0, so I will be lucky if, in fact, it is melanoma.  My sister, Donna, may have just saved my life.  For that, I am eternally grateful.

Please listen!  Do not think that this can’t happen to you.  Learn about the different kinds of sunscreen and use it PROPERLY.  Find a GOOD dermatologist that will do a THOROUGH body check on a regular basis.  Stay out of tanning beds and protect yourself when you’re outside.  And love your family and friends because you never know when one of them might be diagnosed with the FASTEST GROWING CANCER IN THE US.  Or maybe it will be you.

P.S. from Donna:  Claudia had a biopsy on the spot on her cheek and it was BENIGN!  Thank God!

More to come.  Stay tuned....