Tuesday, July 31, 2012

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.

Monday, July 16, 2012

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!

Saturday, July 7, 2012

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.