Monday, March 25, 2013

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!

Saturday, March 23, 2013


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.

Wednesday, March 20, 2013

The Latest Guest: Melanoma

Some guests are not welcome in my house. Melanoma most definitely tops that list. Yet despite not willingly allowing her in, after 2 years and 2 months of showing no evidence of disease, she has shown her ugly face and plopped herself down on my back.

I went to the dermatologist a week ago for my routine full body check that I scheduled after finding a mole on my lower back that felt just like my first melanoma. It looked fine, but it felt like a scab. I knew that wasn't healthy. While the dermatologist told me it was probably nothing to worry about, he took it off because he is one of the few doctors who actually listens to his patients! Well, when I was at work yesterday, my dermatologist had failed to reach me since I was working in a different area of the hospital, so  he reached out to my boyfriend. I was with a patient when I see my boyfriend's phone number come up on my work phone caller-id. I didn't answer. Then the receptionist calls me. I picked it up because I had a gut feeling something was wrong. Right there, with a patient standing next to me, Bryan told me the dermatologist had called, the mole was melanoma.

I felt like I had been kicked in the gut.

Unlike my first melanoma, I have caught this new primary in its very early stages--in-situ--which is a great thing! I am so relieved that I caught it before it could go further; however, because it was melanoma, I have been kicked out of the clinical trial that I had been doing. Yep, even though it is an in-situ melanoma, I am kicked out since the point of the trial is to see if folks who are receiving the drug (ipi VS placebo) stay NED longer than those who receive the placebo.

I feel like I'm on a roller coaster of emotions. I am thrilled that the new melanoma was caught in the earliest stages and only requires a wide excision to get clear margins; however, I am bummed that I'm kicked out of the trial because it meant so much to me. I was determined to give my body (and a lot of freaking blood) for research because I want them to find more treatment options for future melanoma warriors. I hated hearing "the cancer is advanced but not enough for treatment, we will watch and wait " when I was first diagnosed. I don't want another person to have to hear that. Having no control makes me feel helpless.

So, now what?

I go tomorrow morning to have the excision done in hopes of getting clear margins. My (wonderful) dermatologist called me yesterday with the news, but did not want to schedule anything until he spoke to my doctors in New York. He called this morning around 7:40 and gave me the scheduled time for the excision, and confirmed that I am indeed off the clinical trial. (I had talked to the research nurse at MSK, but my doctor is on vacation so I had kind of hoped she was wrong.) 

I was already scheduled to go to New York for my next set of scans/infusion on March 28th, which I will still do, and I will meet with the doctor on the 29th to discuss the results and a new plan of action. If my scans show no evidence of disease--which I am praying like crazy for--we will continue to do scans every 3 months and I'll get back to the healthy life I'm in love with. If the scans show something, we will begin a brand new journey.

They will be testing me tomorrow to see if I have the BRAF mutation. Although I have had melanoma for 2 years and 2 months, I have never been tested because I have remained NED. If I have the gene and I do advance to stage IV, there are more treatment options. I'm hoping I don't need them.

So, that's where we stand now. I gave myself a day yesterday--less than 24 hours--to be down in the dumps and mourn the presence of melanoma. Yes, it is only a melanoma in-situ--thank God--but it's still melanoma and I had no desire of ever meeting her again.

These last 24 hours have reminded me just how important it is to pay attention to my body. Yes, until now, I had no evidence of disease, some would say I was cancer-free, but we melanoma warriors know the dilemma with that statement. Not to be a debbie freaking downer, but we have to stay on top of this disease because there is no cure. Take this situation for example. This is a new primary melanoma 2 years and 2 months after my initial melanoma. What if I had simply gone back to living my life like melanoma never happened? Man, I don't even want to think about what could have happened!

My advice to you, don't push aside that follow-up appointment just  because it doesn't fit in with your schedule. See the damn doctor. I know it isn't fun, but if melanoma has to show up again, find it before it's too late.

*Thank you to everyone who has reached out to me with advice, well wishes and prayers. As usual, you were so kind to me. I truly appreciate each and every one of you.

Tuesday, March 12, 2013

The Day I Got Called Carrie Bradshaw

...OK, so that day is never going to really happen as I just don't have enough jaw dropping fashion choices; however, during the super awesome radio interview with Dr. Dan of The Dr. Dan Radio Show out of Austin, Texas, there was a half a second where I got called Carrie Bradshaw. And I loved it.

Me as a mini-Carrie

Actually, I loved the entire conversation! It was so fun to talk to Dr. Dan Ladd, a dermatologist in Texas and his co-host Lurleen Ladd. Lurleen is actually the co-founder of The Shade Project which is an organization that has an opportunity to win $10,000 that would be applied towards providing a shady place for kids to play! I encourage you to vote EVERY day! Vote Here!!!

The radio show really was a lot of fun. I encourage you to listen to it here:

Listen to the radio show & vote for Lurleen all at the same time! ;-)

I'm off to the dermatologist tomorrow. I have some funky area on my back that needs to be removed! One more scar is one less mole I have to worry about!

Happy Tuesday!

Monday, March 4, 2013

The Negative Committee


We all have them, The Negative Committees, that sometimes take up more time than they are typically allowed. Usually my Negative Committee only pops up right around scan time. I acknowledge it and I move on. I am normally good at pushing aside the worries and getting back to my MelaNormal life. I feel like living my life is one of the best ways to get revenge on melanoma. It's my way of telling melanoma it isn't winning. Lately, it's been hard to keep the anxiety away. I'm fine as long as I'm busy, but it's at night when I'm sending my good juju towards my friends that The Negative Committee begins to show her ugly face.

I know why. 

When I was first diagnosed with stage III malignant melanoma, it was a complete surprise. I was not expecting one little mole to turn my entire life upside down. Even after the first surgery I didn't know what I had ahead of me. Through my research and meeting friends online I quickly realized that melanoma is not going to be something I heal from and forget. It's always going to be there. There's always going to be the need for observation. I will forever be a cancer patient. That took a long time for me to grasp. If I'm being honest, sometimes I still don't think I totally grasp it. Thankfully I get to live my life in a way that doesn't force melanoma to be on the front burner anymore. I get to be a healthy daughter, a silly girlfriend, a crazy live-in-girlfriend-not-yet-stepmom to the kiddo, a loving sister (HA! I try, sissy & baby sis!), etc. I am one of the lucky ones.

So, why is the Negative Committee back in session? I am far better off than others! I've hesitated blogging about this, so try to understand...The Negative Committee has been on overtime in my head lately because  seeing my friends advance to stage IV has been very difficult. I'm scared for these people. I ache for their families. And then, late at night, I see myself in their shoes.

People sometimes question why stage III patients receive CT scans so often. This year I saw how important those scans actually are for us. I witnessed how quickly one can go from No Evidence of Disease to stage IV.  Perfect scans, clear for 2 1/2 months, then boom, melanoma in multiple locations. It happens so quickly.

It terrifies me.

I'm not uneducated anymore. I can't hide behind my "it's just skin cancer, it's OK" attitude. I know what it can do and how quickly it can do it.

Some would tell me that one way to avoid this added anxiety would be to take a step back from all things melanoma, to put melanoma behind me. Well, that's what people don't realize. These people are my friends. Selfishly, their situations terrify me. More importantly, their situations break my hearts because of the ways it changes their lives! These aren't statistics I'm reading about, these are my friends. I cheer for them, I cry for them. I'm going to celebrate with them when they receive the news that they are once again showing no evidence of disease. (And it will happen, girls.) It's that simple.

The Negative Committee has officially outstayed her welcome. Maybe I do need to stop being afraid to dream of No Evidence of Disease

...for all of us.