Tuesday, February 26, 2013

Melanoma...the Connection with Family and Friends (Part 2)

Continuing the theme of how melanoma affects the family and friends of the patient.  This from one of my oldest and dearest friends, Denise.

"This will be hard to put into words, but I will try.
Donna and I were great friends in our younger day.  Somewhere along the line, we lost touch.  Years went by, and often I would wonder how she was doing, but as the busy world went by, and I dove into my own life and difficulties, I didn't make the effort to seek her out to find out how she was.  Then, the feared "Class Reunion".  Donna and I touched base, and made sure that each other would be there and we would spend some time together.  Since then, we have spent time together, remembering how important our friendship is, and catching up on all aspects.   
My 50th birthday was approaching, and my life was in a bit of turmoil.  A 50th party was being given to me at my sister's, and Donna was going to be there, along with some other dear friends.  I was excited to see them all.  During the party, I knew something was going on, but Donna, in "Donna Style", tried to hide it and make sure my birthday was fun for me.  She tried to explain it away with some reason, but I knew something was wrong.  After returning home, she called me to tell me she had cancer.  The first thing that came to my mind was what an idiot I was to wait so long to get our friendship back, and then how strong Donna was to call me and tell me, instead of emailing or texting (as we all tend to do now in this impersonal world).  We cried a few tears, and then decided that she was too damn strong and stubborn to give in to any of this. 
Now, to the reason I was asked to write this.  Nobody can say that this has affected them as much as Donna herself, but I would say this experience has changed how I look at and feel about things, a lot.  It isn't all the "life is short - do what makes you happy" thing, although that is a part of it.  The main way this affected me was it awakened all my emotions.  In having some major disappointments in my life, I had kindof put a smile on my face and was just going through the motions.  Do it, take it, let it happen, just smile and make people believe you are strong.  Donna gave me, and others, the privilege of going through this with her.  I have learned so much from her.  I have learned the things she wanted to teach me about tanning and cancer, but she has taught and shown me so much more than she can know.  I know it's OK to cry for myself and for someone else, and it's not a sign of weakness.  It's alright to be angry, but you have to direct it to do good things.  She has reminded me that a real friendship never ends, but sometimes just takes a time out, but that person is always in your heart.  This experience also reminded me that every day IS a gift.  It may be a gift you didn't ask for, but it is a gift none-the-less.  To abuse it, is an insult to those who are working and trying so hard to get another "gift".  This might all sound sappy, but with every tear I have shed for Donna, with every prayer I have said for her, with every sleepless night I have spent afraid for her and her family; for myself because-it CAN happen to me, I have been thankful and amazed at how I have grown from all of this. It isn't easy to face all your emotions, and unfortunately Donna has been forced to, and in that, she has allowed me to.  Now, to put it into perspective, good things did come from bad, but it would be a better world if the roller coaster wasn't ridden to get to this point. I am not going to say, as thankful as I am, that it has been easy."

Saturday, February 9, 2013

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....