Saturday, July 20, 2013

There it is again...

You know...that thing that happens that forces you to really consider your own mortality.  Talia Joy Castellano, an incredibly courageous 13 year old, passed away Tuesday after her war against cancer.  And now another young warrior in the melanoma community, Tim Vandermolen, has passed away.  I'm sending prayers of peace and comfort for their families.  

Last week, when Jim and I were in Houston, I was scrolling through Facebook and saw a picture of Talia in her hospital bed curled up in a ball...her mom on one side of the bed and her sister on the other; it was clear that she was close to dying, and I just lost it right there in the car on some Texas interstate.  All I could see in that picture was me.  And all I could think about was the pain my family and friends would feel if it were me in that hospital bed.  Trust me...I'm doing all I can to not let that happen.  But if I'm being honest it could, at any time.  And that's hard; for me, and for anyone who cares about me.

So please me a favor.  Put on a boatload of sunscreen, wait 20 minutes, and then get out there and enjoy the hell out of your day!  You never know when it's your last.  Oh, and don't forget your hat!  xoxox!

Thursday, July 11, 2013

Two years...really?

I'm sitting in bed tonight, about to embark on what I hope will be an "excellent adventure" to MDA in a few hours for some guidance on how to beat the beast.  Two years ago today I met my surgeon, DJ Winchester.  He is the kindest, most skilled surgeon ever, IMO. Of course, we all have our favorites. He saved me from myself. That day in his office two years ago, he took a look at what was on my back. He biopsied it, but in reality there was no need. It was melanoma. No doubt. The only question was whether it had spread. He performed a fine needle aspiration under my right arm.  I wanted to kick him in the groin. He said he would get me on the surgery schedule next week. Really?  I was really hard to psych myself up to come here...and you want me to wait til next week?  He would be right back, he said. When he returned, he asked me if I was free Wednesday, two days away. He would remove the lesion on my back (which was large and would likely require a skin graft to close), then he would probably remove all the lymph nodes under my left arm and check out the ones on the right. There would be dressings, and drains, and pain...but I would get through it, he said. 

Before he left me to dress, he asked whether there was anything else I needed or questions I had. I told him that my 50th birthday was a little more than 3 months away. Can you get me there, I asked?  He promised me he would. He did, and what a party we had! 

A few hours from now, my best friend in the world and I will head down to Houston so that I can see one of the best melanoma docs in the world. After my most recent PET scan, I am most likely looking at surgery to remove another tumor...this time from my colon. The tumor in my brain is necrotic and dying, according to my neuro-oncologist, (Thank you God!) and there was nothing new on my PET scan yesterday. That alone is something to cheer about!

I've spent a lot of time mulling over the last two years in my head. Three days after my first surgery was my sister Claudia's birthday. No way I could go they brought the party to me. My Jimmy, the best husband ever, never left my side.  He changed dressings, and emptied drains, sat with me until I fell asleep, and drove me to every follow-up appointment. And then toward the end of August, the Saturday night before I started my yearlong course of Interferon, a whole lot of important people to me partied it up at a local bar because we all knew it would be a long year. It was a rough night, to say the least.  I lost a flip flop that night. One of my friends found it, earning me the nickname of Cinderella!   A couple of months after that, my family threw me the best 50th birthday party ever!  All my friends, old and new, were there, and my family...including my niece Sydney, who I got to meet for the first time.  What a night! 

There have been way too many doctor appointments to count, far too many scans, lots of sleepless nights, a few biopsies courtesy of my dermatologist, and three surgeries. While I would gladly give up the melanoma, I would never give up what I've learned, the people I've met, and the love I've felt when facing hard times. My family and friends have been there for me no matter what, and so have my new melahomies, and for that I'm eternally grateful. 

More to come from Houston.  Love to all. 

Tuesday, July 9, 2013

The Quiet Room Chair

If I count correctly, today is my 7th PET scan since being diagnosed with melanoma in 2011. And as I'm sitting here in the Quiet Room waiting for this radioactive stuff to meander through my veins and attach itself to anything cancerous, it occurred to me...who else has been in this chair?  Do they come alone?  Do they bring a friend or family member?  Do they sit and worry or read and try not to think about what could be?  I tend to use my time here to reflect. Sometimes I write. Sometimes I read. And I wonder about those other people. How they're doing. Whether they're afraid. Whether they're NED (hope so)!

My dermatologist recently shared with me that she has a melanoma patient who still tans. In a tanning bed. Mind blowing right?  Most of us are fighting for our very lives and this fool is basically committing suicide by tanning bed. Ugh. Makes me nuts. 

Anyway, I think tonight when I hit the pillow I'll say a prayer for him, and all the other people who've been in this chair in the Quiet Room. 

Monday, July 8, 2013

Cool App for all you SPF users!

Just found a good app that tracks the UV index where you are, reminds you to reapply sunscreen, and suggests what sunscreen to use.  Seems pretty cool.  Check it out!  It's called Coppertone-My UV Alert.  Oh, and best of's FREE!!!

Tuesday, July 2, 2013

No need to hide inside.....

Sunscreen and the right clothing will protect you while you're enjoying what seems to be the shortest (and in my opinion the best) season of the year.  It's mega-important that we all wear sunscreen EVERY day, but during the Summer it's even more important.  The sun's rays are stronger, and UV indexes are higher.  You're getting reflection from the pool or the lake...and from the sand at the beach.  God, would I love to be on a beach right now (under an umbrella of course)!  Do try to avoid sun exposure at peak times of 10am and 2pm and seek shade when you can.

Here are some tips and tricks for finding the right sunscreen for your family from EWG, the Environmental Working Group, and some tips on clothing that helps protect you from UV rays from the Skin Cancer Foundation.

So slather on some sunscreen, throw on a hat and get out there!