You have GOT to be kidding!

A friend of my friend, who is the Author of Adventures with My Enemy: Melanoma, recently went to her first OB/GYN appointment since becoming pregnant.  The "doctor" gave her this:

Catch the part about tanning?  Are you KIDDING me?  This....from a physician? 
I'm stunned.  This just goes to show how much work there is to be done in educating people...including doctors...about melanoma.  I wish I knew who this physician was.  I'd make an appointment, and then I'd show up armed with a ton of information.  I'd bring brochures and posters and pamphlets; anything I could get my hands on really, that would clue this person in.  His/her patients deserve that.

KNOWLEDGE IS POWER!

Here are some sobering statistics and information on melanoma.  Please read and share with everyone who will listen, and be persistent with those who won't.  You might save a life.

• Skin cancer is the most common of all cancers.  Melanoma accounts for less than 5% of the cases, but almost 80% of skin cancer deaths.
• Around 76,250 new cases of melanoma have been/will be diagnosed in 2012.  That's a new case every 8 minutes.
• Around 9,180 people will die from melanoma this year.
• The incidence of melanoma has been rising since the late 70s/early 80s.
• Melanoma is not picky about who it strikes.  Young or old, black or white...anyone can get melanoma.
• The World Health Organization (WHO) has declared UV radiation (including tanning beds) to be a human carcinogen.
• Ultraviolet (UV) radiation is a major risk factor for most melanomas.  Sunlight is the main source of UV rays.  Tanning lamps and beds are also sources of UV rays.  People who get a lot of exposure to light from these sources are at greater risk for skin cancer, including melanoma.
• There are no safe UV rays.
• Melanoma is the fastest growing type of cancer...worldwide. 
• Your chance of developing melanoma increases by 75% if you used a tanning bed before age 35.
• Your chance of developing melanoma increases by 20% by using a tanning bed just once.

More important information and stats:

From the Melanoma Research Foundation:http://www.melanoma.org/learn-more/melanoma-101/melanoma-statistics-facts

From the National Cancer Institute:http://www.cancer.gov/cancertopics/wyntk/skin

http://www.cancer.gov/cancertopics/types/melanoma

From AIM at Melanoma:http://www.aimatmelanoma.org/en/aim-for-answers/about-melanoma-and-other-lesions/melanoma-statistics.html

Grateful....

I'm sitting here at my favorite VW dealer waiting for them to open so I can have the pleasure...not...of paying $80 for an oil change. I have lots to do today, not the least of which is to pick up some ribs for a family dinner tomorrow night. My future son-in-law, David, loves my ribs. : )  Then there's the house cleaning, grocery shopping, wrapping gifts, and getting ready to go out with my favorite guy in the world tonight.  For a second, the word "ugh" came to mind, until I remembered just how fortunate I am to be able to do these things. Really fortunate. Many of my molemates are undergoing treatment, are in the hospital for surgery or related problems, or worse...are home with no options left.  So I truly am grateful to be sitting in my car at VW. 

Some of you know that I will be rejoining the "in treatment" crew on Wednesday. Yervoy is next for me.  It is designed to help kick start my own immune system into kicking melanoma's ass, so it's classified as immunotherapy, just as Interferon is.  It is not without side effects, but I'm keeping my fingers crossed that I won't be in the small group of people that has a rough time with it. Assuming I'm not in that group, I will get four doses; one every three weeks, and we'll go from there.

And in the meantime, I will be grateful...for everything in my life.  For the fact that I woke up today, for the fact that I am able to clean my house, and wrap gifts, and prepare meals that make those I love happy.  I hope you will take a minute today to consider how fortunate you are too.

LIVE people!

When my journey with melanoma began, I was introduced to a group of people who call themselves Bad Ass Melanoma Warriors.  I am proud to say I am part of this group.  These people are strong, compassionate and intelligent, and they rally around each other to give (or get) support for whatever might be happening whether it's anxiety about upcoming scans, or help with treatment decisions, or hearing bad news.  We are a tightly knit community, and our community heard bad news last night.  One of our youngest warriors, Jillian, learned that her treatment is not working.  The doctors say there is nothing else they can do.  She's 23 for God's sake.  23!  

I have to tell you that I do not know this family personally, but their story is etched on my heart forever.  From what I have learned about Jillian through her mom's blog "Jillian's Journey with Melanoma: A Mother's Story," she is a fighter, is outgoing, funloving, loves the outdoors and her family, and is beautiful and that's just for starters.

Here is a link to her mom's blog:  http://jilliansjourneywithmelanoma.blogspot.com/2012/10/the-quest.html 

You know, it's bad enough having melanoma yourself, but to be the mother of a child who has it...well, I just can't fathom the pain.  As parents, we always want to do all we can to take away any pain our child is in, so to watch your child, a daughter in this case, struggle with Stage IV melanoma has to be the toughest thing in the world.  

So, as Jillian's mom suggested last night, I'm going to hug my kids and not worry about the things that aren't important.  Life is short.  Far too short.  And we all need to get out there and LIVE!  I hope you will too.

Stage IV

I realized this morning that I've been avoiding my little blog.  Why?  It's painful...and scary.  Sharing information with you means that I have to face it and deal with it myself, and frankly there are 1,001 things I'd rather do.

In June, I was hospitalized with pancreatitis for five days.  That hospitalization likely saved my life.  On one of those five days I had an MRCP (a specialized MRI of the abdomen).  After my belly calmed down and I got to go home, I scheduled a 3 month follow-up MRCP at the request of my doc for September.  That MRCP showed a mass in the wall of my gallbladder.  A PET scan followed a week or so later that confirmed a mass "highly suspicious for malignancy."  Whether it was melanoma rearing it's ugly head, or a new primary gallbladder cancer was really the only question.  BUT, without the need for a follow-up MRCP in the first place, the mass (whatever it was) probably wouldn't have been discovered until much later, and that could have been bad.  Really really bad.  

Anyway...it was melanoma.  Sigh.  I made it a little over a year without metastasis.  Grateful for that time.  And now, technically, I'm NED (no evidence of disease) again, but I'm also now Stage IV because I had metastasis to an organ.  I had surgery on November 2 to laparoscopically remove my gallbladder and lobe 4b of my liver (thank you very much Dr. Baker).  Thankfully, my liver was clean with no evidence of invasion of mel cells into the liver tissue.  I have six incisions that are healing pretty well, and I'm feeling stronger and having less pain every day.  

I've been spending some time on clinicaltrials.gov looking for trials I might be eligible for, and reading a really comprehensive book written for melanoma patients by NCCN (thanks Lindsay Hladnik).  Up to now I've been in watch and wait mode.  Not anymore.  I'm in a fight for my life, and I'm going to give it every ounce of energy I have; which leads me to why I started this blog in the first place.  Without all of the damage I did to my skin by tanning (outside and in tanning beds), none of the above would likely have happened.  NONE of it.  So please...I beg you...wear sunscreen every single day (yes, even in the winter), and for God's sake, please don't get into one of those stupid tanning beds, ever.  

Shocking...

Given all of the evidence that's out there about tanning and skin cancer, I have a really hard time understanding why anyone would still tan.  

http://www.cnbc.com/id/49101714/

The Word of the Weekend was....

Know what sucks?  Having to tell your family and friends that your melanoma has come back.  Those phone calls are impossibly hard to make.  The "F" word has been the word of the weekend.  Every time I allowed my mind to wander to melanomaland, the "F" word was the only word that seemed appropriate.  Must have said it to myself 100 times.

"F!!!"  I'm only 6 weeks out from finishing a year of interferon.  I was feeling really good.  My energy had come back, along with (unfortunately) my appetite, and I was pretty damn comfortable in my Stage 3ness.  Now, here I am staring at Stage 4.  There is no stage after 4, and I am frankly terrified.

Talking with my oncologist on the phone Friday evening when he relayed the news of this new mass in my gut, I actually felt bad for him.  He was kind of stumbling over what to say to me.  I imagine it's hard for him to tell his patients bad news just as it's hard for me to relay that same information to the people I love when it pertains to me.  

So I will go Tuesday morning and have another PET scan to see if there are any other "new" things to be seen, or if it's just the one spot.  Praying SO hard for the latter.  Then I'll go from there.  Whether it's surgery or other treatments, I WILL fight this bitch with all I have.  Know THAT melanoma!  

Yanked Back to Reality.....

So, I was reminded this week with a little slap in the face that I still have melanoma, and that I always will.  In spite of the fact that I feel great since I finished my Interferon therapy a little over a month ago, that damn melanoma yanked me right back to reality on Monday.  

I went in for my regular 3 month visit with my dermatologist (a fabulous dermatologist, BTW).  All was great until I realized she was intently studying a mole on the right side of my torso.  Rut-roh.  Until now, I had a few things removed but they weren't moles and they were at my request...cosmetic stuff.  Like I said...until now.  She studied it with her little magnifying glass thingy and pronounced that while she didn't think it was melanoma she wanted to remove it anyway since it was a little dimpled in the center.  6 mm punch please.  It was a piece o' cake, really.  The stitches hurt more now than what she did.  

The problem was after that.  Why?  Because now we play the waiting game for biopsy results.  Every time the phone rang, I practically did the "Exorcist" move to see if it was her number.  On pins and needles for a couple of days, but being very busy at work and home helped. 

My derm. of the year candidate called today and said it was benign.  PHEW!  Dodged a bullet.  Thank God!

The cutest part of this whole thing was my husband.  If he knew I was putting this into my post, he'd kill me but I'm doing it anyway.  A friend of ours had a mass of some kind removed a few years ago.  He got a call from his doctor that it was benign, but he heard "anine."  So, when I got my good news this morning I sent my hubby a text that said "It's anine."  He sent one back that said "You're aten."  God, how I love him.

Anyway, please people (and I know I have a very small audience)...CHECK YOUR SKIN!  Don't let your guard down now just because Summer is over.  You need sunscreen every day YEAR ROUND.  Love to all!

Scans are scary...really scary.

It's funny how in some ways I can't wait for scan day, and in others I dread it like the plague.  I suppose it's because so far it's been nice to get that call from my oncologist's PA a few hours after my scan, and she's breathless and happy and so excited to tell me I'm still NED.  Of course, there is always the chance that melanoma has reared it's ugly head and there is something insidious growing inside me somewhere.  There's the dread part.


I have been fortunate enough to be NED for a year now.  Such a blessing!  I know...not a word anyone would normally hear me say, but that's a story for another day.  It's been a good year, in spite of dealing with the side effects of interferon.  I've lost 40 pounds and I look like myself again, except for an ever widening patch of grey hair.  Well, that and a few more wrinkles that I earned courtesy of the sun and tanning beds.  =(  But the best part is that relationships that are really, really important to me are closer than they've ever been.


So here I sit in nuclear medicine, having had my glucose level checked and IV started so I can be injected with radioactive isotopes, and now I wait.  I wait 45 minutes for this stuff to go through my body.  Wait...do you know about PET scans?  I'll tell you.  Apparently this radioactive sugar attaches itself to tumors, so this stuff going through my veins is currently in search of something to stick to.  Please God, don't let it find anything!  Then, it's off to the scan room where I'll be covered with a nice warm blanket, and they'll take pictures from head to toe.


"Scanxiety" as my fellow molemates and I call it, sucks.  For a few days before scans I can't sleep well, I don't eat much, and I'm cranky as hell (Jimmy can attest).  Whatever the outcome, I just want to get it over with.  Melanoma patients tend to live in 3-4 month increments of alternating happiness and fear.  When you hear that you're NED, it's like a new lease of life...for 3 months.  Because you know scan day is coming again in the not too distant future, and you'll go through it all over again.


So back to scary.  I sit here in the Quiet Room before the scan, and I think about my family and friends, and how much I love every single one of them, and how lucky I am to have their love and support.  Then icky thoughts creep into my head and remind me that I am a Stage 3 melanoma patient.  They call it "advanced" once you are Stage 3.  I hate that word, but I hate the word metastasis more.


So, do yourselves a favor and make sure you wear sunscreen every single day.  Sunny or cloudy; summer, spring, fall, and winter.  Otherwise, you may end up here in the Quiet Room too.

Am I angry? You bet I'm angry!

Tomorrow, in Springfield, IL there will be a City Council vote to ban teens from using indoor tanning facilities. The Indoor Tanning Association has hired a lobbyist who will speak at the hearing tomorrow, I am assuming to share the "benefits" of indoor tanning (there are none), but also to bemoan the loss of revenue for tanning salons due to the Tan Tax and the recession.  I do not feel one ounce of sadness for these businesses, or for the ITA.  People are dying.  Dying from tanning bed use, and all these folks can complain about is MONEY?  People are what's important, not money.  


Even if only ONE teen is saved from melanoma by an indoor tanning ban in Springfield, it is worth the effort!

Year One


Today marks one year since I started down the "melanoma road."  I had a large lesion removed from my back that required a skin graft from my thigh to close, lost 1 lymph node under my right arm and 29 lymph nodes under my left arm (1 positive) which resulted in lymphedema.  Two weeks later, Jimmy and I met with my oncologist who was brutally honest, as he should have been.  I'll be honest, too.  I didn't think I would be here today. It's amazing how attitudes can change.


At this time last Summer, though I had so much to say, I was really very overwhelmed by my diagnosis and everything that went with it.  The process of healing from surgery, the thought of an entire year of treatment, and my mortality smacked me pretty hard.  The hardest thing in the beginning though was telling my family and friends that I had melanoma.  I'll never forget those conversations.


There have definitely been ups and downs through this year.  From the Saturday night before I started treatment (got a "little" tipsy), and a joint 50th party that wonderful family and friends threw for Jim and me where I got to meet my niece for the first time; to lows of having to take breaks from treatment and reducing my Interferon dose because of out of whack bloodwork, and most recently a bout with pancreatitis (wouldn't wish that on my worst enemy).  It hasn't been dull, for sure!  


And now...there is light at the end of the Interferon tunnel.  My last Interferon dose will be no later than August 21, 2012.  My doc said only 5% of people make it through the entire year. I'm GOING to be one of them.  But I wouldn't be without all of the LOVE AND SUPPORT I've gotten from friends and family.  From dinners dropped at our door to cards and phone calls, you've all been SO amazing.


I've learned much about melanoma.  I've learned about myself, and I have a slew of new friends "molemates" as we call each other.  It's amazing how important it is to be able to vent to someone who has gone through what you're experiencing.  So while I would obviously prefer that I not have melanoma, I've met some pretty awesome people.  People who do not hesitate to offer support, and will cheer you on no matter what, and I wouldn't trade that for anything.


Melanoma.  Even the word is ugly.  While overexposing unprotected skin to UV rays isn't the only way it occurs, that's how most people get it.  And I don't want YOU to get it.  It's why I nag about sunscreen and hats.  It's why I jumped on board with AIM at Melanoma to help get the teen tan ban passed in Chicago.  It's why we'll be driving down to Charlotte, NC in November...to walk to raise money for AIM (and to meet my molemates of course)!  Thank you all for your generous donations!  I will continue to help get the word out about melanoma and hopefully prevent others from dealing with this horrible disease.


Just one quick word about my main (only) dude and caregiver, my awesome husband, Jim.  The guy who has practically never left my side for the last year; the guy who changed dressings for weeks, who went with me to countless treatments and doctor visits, and has ALWAYS been there for me.  Like Edwin McCain says...I could not ask for more.  I love you dude.


This is also the first post in my new blog entitled "Your Tan May be Killing You" which you can find here, if you like:  http://yourtanmaybekillingyou.blogspot.com/


There are links to some of my molemates' blogs and lots of other information about melanoma.