Melanoma Awareness Month

I pretty much suck as a melanoma blogger lately, but I'm currently a fabulous life liver! ;-) I'm sorry that I have been so MIA. My sister got married, my sorority sister got married, we picked a date for our wedding, and we're super involved with T-Ball for the kiddo. (Yep, I am even the Team Mom!) Life is filled with many things I love, but that also means I am supporting melanoma awareness month!

 

I am sure most of you have heard the outrage from the melanoma community about the recent campaign  called Melanoma Monday.. The American Academy of Dermatology has asked that folks wear orange on May 6, 2013 in efforts to raise awareness about melanoma. This seems a bit odd to most of us as orange is not the color of our cancer, black is. The American Academy of Dermatology has replied to our anger by saying their desire is to bring awareness to all skin cancers, and that orange is a color that catches attention. They have asked that we make a  fashion statement by wearing orange. 

While I appreciate that they are using their organization to raise awareness about melanoma,  I do wish they would have used black as the color instead. They are calling the campaign Melanoma Monday, not Skin Cancer Monday, so the color technically should be black. Maybe I'm stubborn, but I will be fashionable on May 6th in black for the color of the disease that has taken too many of my melanoma friends from me.

How do you plan to raise melanoma awareness this month?

Hope you are all well! 

XO

'Tis The Season

Melanoma Awareness is in the air! Ever since Tan Mom made her way into the headlines last spring, I have noticed more magazines mentioning the dangers of tanning. Sometimes it's a blurb in the skin care section, other times it's in the celebrity gossip area, and sometimes there are times when magazines will have full articles! Speaking of which, have you picked up Glamour's May edition? It's AWESOME.

 

I'm telling ya, this is a must read! Go pick up your copy today.

My point is, with the warm weather we are beginning to experience, people are talking about tanning. Some are talking about the need to tan, others are reminding people not to tan! Just search on Twitter, you will see both sides.

Just yesterday I was tagged in a post on Twitter by a fellow blogger. I am always a little nervous about Twitter because I have some tanning bed lovers who sometimes like to start Twitter wars. I was pleasantly surprised when I began reading "A Rant."  Helene doesn't blog about melanoma in her free times, her blog isn't dedicated to melanoma awareness, and she has a lot of followers who probably still believe in the 'healthy glow.' She risked losing followers last night with her post on tanning. What has made her so sensitive to this topic? Her dad has melanoma.

I was so impressed with Helene's courage to share her "rant" knowing that tanning is still a subject that makes folks a little defensive. I noticed she had a lot of comments on her post so I had to read them. I quickly realized how much has changed in just the 2 years since I have battled melanoma. People are (slowly) realizing that the fake and bake lifestyle is a thing of the past! I was SHOCKED how many people commented with opinions similar to mine. Usually it's the opposite. These aren't melanoma warriors, these are young women! Go Helene for sharing her words. I bet she had no idea how many people would relate!

Bring on warmer weather...and melanoma awareness!

 

We're..........

...Engaged!

That's right, I'm going to marry Mr. Spots!

(Remember how he got his name? http://adventurewithmelanoma.blogspot.com/2011/02/b-becomes-mr-spots.html)

 

Mr. Spots told me to pack a bag & he said we were going out of town to celebrate my birthday. 3 hours later we were in Charlotte, North Carolina at The Dunhill Hotel. I won't give you all the details, but you can imagine my butterflies when I turned around to see Mr. Spots on his knee! (I handled it so gracefully too. I turned my back to him, yelled ahhhhh, did a little dance, let him give his (super sweet) speech, got a little choked up, and then I pretty much tackled him in a hug!) 

Now, planning must begin to be a TAN-FREE bride!

EEEEeeeeeeeeeeekkkkkk!

After all we've been through, I'm ready for this HAPPY adventure!

Drama Girl

My doctor goes on vacation, I find a new melanoma, drama erupts! What does he expect? For me to behave while he's gone on a much needed vacation? Ha! Teasing, Dr. D., I could have done without that experience.

I wrote about how I received the phone call from Sloan Kettering stating that I was no longer able to participate in the ipi/placebo clinical trial since I had new evidence of disease. Yes, they were told by my dermatologist that it was an in-situ melanoma. Still, kicked out of the trial, the nurse said.

The Monday that my doctor returned from vacation the same nurse called and said that it was determined that because my new primary was an in-situ, I am not disqualified from the trial. 

I was confused about what I wanted to do. I was relieved because I wanted to continue the trial for the reasons I mentioned the other day. I was worried that I needed to do more or that it wasn't worth my time.

Like always, my oncologist helped answer my questions.

When I was waiting in the room for my appointment, my oncologist stuck his head in the room & told me that my scans were clear. Because he knows his patients, he knows I can't relax until I hear the results. (Yes, he also knows he has me spoiled & that the moment he doesn't come in before my scheduled time, I am going to know something is wrong. We've set up a bad habit, but I love him for it.) Then I met with the head research nurse who I had only heard about from my friend Julie. I mentioned to the nurse that I had not met her before, and she said, no, but I know who you are! Apparently, I caused a bit of drama with the doctors at Memorial Sloan Kettering last week. There was apparently a 4 day debate about whether I should be allowed to continue the clinical trial or not. I'm not sure who stood where or why, but it was ruled that because an in-situ melanoma is not invasive, I should continue as planned. The drug is designed to treat metastatic disease and has no control over new non-invasive melanomas which is why we must keep our scheduled appointments with our dermatologists! (Remember, early detection IS key!)

Because the research nurse has a lot of experience with folks on this trial she was able to answer a lot of my questions and provide me with information I had not heard before. For example, remember that weird facial swelling I had on a few occasions after my last infusion in December? Although rare, has seen that in other patients. The joint pain in my hands, normal side effect. The inflammation of my lymph nodes 2-3 weeks after every single infusion = totally expected.

See, these were all things that no one had really talked to me about. I don't call with problems, but I've called Sloan (and headed to my local oncologist in tears) after almost every infusion regarding the swelling. Finally, someone tells me to expect it!

When my oncologist came in for our appointment I jumped up to hug him and told him he's no longer allowed to take a vacation. He said he knows, that when he goes away, I cause trouble. We started chatting later and he said that while his much needed vacation lowered his blood pressure, he couldn't escape wifi so he checked his email. "Every time I checked my email I had 60 new emails & 20 of them were about Chelsea Price!" Oops.

I asked him point blank if he thinks we should continue what we are doing and he flat out said yes.

There was no debate.

Yes, continue what we are doing. In May 2013, it will be 2 years since I started the clinical trial & we have a year to go after that. None of us know if I am getting the drug or the placebo, but whatever we are doing is working for me at this time. I can't risk changing that.

I headed into the Chemo Suite 2 hours behind schedule only to have a nurse that my veins are not used to. Boy, after the lab folks having to use 3 veins for blood and the chemo nurses using 3, I was mildly annoyed.

 

 Sorry, doctors, that I caused a little confusion, but hey, that's why you earn the big bucks, right?! (Best story I heard: Julie asked her doctor how he does this--delivering the bad news--every day. He told her that he does it with hopes of delivering good news! *OK, I may have that a little wrong, we did split a bottle of wine, but that was the main point. He's there to give us our lives back.)

Speaking of Julie......... Not only did I get some QT in with my mom, I also got to visit with Julie and her mom! Remember Julie? (Please continue to pray for her.) We had dinner in Little Italy & laughed, laughed, and laughed! Seriously, the waiter kept laughing at us laughing! There were extra long hugs, maybe a few blinked away tears, but mostly there was laughter.

A good trip, answers to my questions, and meeting up with ladies I admire = one great week.

Have a lovely weekend, friends!

NED

It's true!

The scans were completely boring! Clear! The opposite of what I expected!

No Evidence of Disease!

Thank you for your thoughts, your prayers, and your wishes. I have so much to tell you once I get a few minutes. I returned back to work yesterday! My days are busy, my evenings are busy, and then exhaustion hits.

I'll be back to tell you all about it SOON.

XO

I'm a Woman, What Do You Expect?

Women: We get one thing, we want another.

I received a phone call today that changed things once again! A research nurse from Sloan Kettering called and said that I am actually not disqualified from the clinical trial. Since the melanoma was an in-situ, I am still able to participate. I will be closely monitored by my dermatologist, and it will be noted in the research that I was diagnosed with an in-situ 1 year and 9 months after beginning the trial.

At first all I felt was relief! I was not being fired! (OK, I can be a drama queen. It felt like they were saying, Hey! You aren't healthy enough anymore! Get out!) Now I'm wondering what my doctor is going to suggest on Friday. I'm on a clinical trial to see if the drug will prevent melanoma from spreading, yet I was diagnosed with a new primary.

Is it common for melanoma patients to have multiple primaries? Do I continue on this trial even though whatever I'm getting is obviously not working since melanoma showed her ugly face again? Is the drug (ipilimumab) even supposed to keep our bodies from developing a new primary or does it attack the internal organs?

I turned to Google for answers. According to Cancer.Gov, "Risk of a second primary melanoma following diagnosis of a first primary melanoma is approximately 5% and is greater for males and older patients.") Um, I'm not a man, and I'm not old. What does this say about me?

I can't help but remember how "unusual" my doctors said my case is. There's the age factor: my first oncologist was amazed at how young I am, my second oncologist told me I'm his youngest patient. I have no family history. According to my first oncologist, melanoma only had a 10% chance of spreading to my lymph nodes, yet it did. Melanoma was found in lymph nodes on both sides of my body which is apparently very unusual. And now I have this new primary.

I'm a mysterious woman.

I just hope my oncologist has some answers for me on Friday, including boring scan results!

Healing

Thank you all for your kind words, emails, and texts this week. While my new primary melanoma was quite a shock to us, my family and I truly appreciate the support you continue to send our way. We will head to New York in just a few days for scheduled CT scans and to evaluate the situation with my doctor. He has been on vacation this week, so he doesn't even know of my new excitement. I just hope he doesn't have anything exciting to tell me....I prefer boring scans, Dr. D. Please.

Thank you again for your well wishes and prayers. You've helped make this week easier.