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.


19 comments:

Anonymous said...

So very happy you caught it early and will be praying your scans go well next week. There are no words to describe the true amazement I experience when I read your words, you are strong way beyond your years.
Kathy Hinkle
One of your prayer warriors

Madisynmum said...

My prayers from Delaware are being sent your way!

surfer said...
This comment has been removed by the author.
Anonymous said...

Keeping my fingers crossed for you Chelsea. Last spring my derm saw something suspicious, did a biopsy, and sure enough, it was melanoma in-situ. Had the surgery, and it appears they got it all.

I doubly worry because I lost my father to this. The fear never leaves you.

Give yourself a pat on the back - you saw something and did something about it. Everything will be fine.

rhonda

Strong Steph said...

Oh Chelsea...you can do this!! You caught it early and have good doctors. Take care!

Marion@Life Tastes Good said...

Chelsea, you are such an inspiration to so many. You got this and we are all praying for you. I'm so sorry about the trial. Keep the positivity!! hugs and much love, sweetie <3

pappy5454 said...

Praying for you !!!!

Anonymous said...

Very sorry to hear this Chelsea but well done for staying on guard and catching it so early, and also bouncing back so quickly...you have excellent survival instincts! And best of luck with your BRAF testing and the scans later in March. I did read somewhere that people with multiple primaries had better survival odds. Will try to find the research and get back to you. Paleskinner

Pam Bush said...

So sorry this ruins your trial Chelsea! Hopefully you can find another that fits. I am currently on number 3 melanoma in just over 3 years. I have surgery in a week. This is a ride you never get off of. Keep inspiring others, you are doing a wonderful job!! thinking of you. <3 Pam

missionmelanoma.blogspot.ca

Lisa Hanley said...

I am really sorry to hear your news, but so very happy that you found it at a really early stage.

When I noticed a changing mole above my knee, I waited months before I finally got a dermatologist referal and appointment. If I had gone when I first noticed the changes, I probably would have caught it in-situ as well. But because of my delay (most likely), that gave it time to spread to a lymph node. So I will never wait like that again. I'm totally with you... see a weird mole... get the heck to the dermatologist asap!

Good luck with the WLE and the following scans. I will be thinking of you and sending good karma your way :-)

Rose ~ from Oz said...

Thank God for your regular body checks which got this horrid little beast before it misbehaved. Diligence and commitment is what saves us.
An emotional, poignant and educational (hope people are reading and listening) post Chelsea and good wishes and prayers from Australia dear girl.

Al said...

"...the trial is to see if folks who are receiving the drug (ipi VS placebo) stay NED longer than those who receive the placebo." Rest assured Chelsea that you have contributed valuable data to the trial. It's a bummer that you didn't remain NED longer (or forever) but the fact is they have your reoccurrence as a data point which contributes greatly to the study. "Kicked out"...sounds more like "contributed my part." You done good by participating. And now you're gonna kick mel's ass... Ju ju sent your way!

Holly said...

I am so sorry that biatch showed back up in your life, but I love you attitude about helping others not go through what you've gone through. You are a true inspiration and I will be praying for good news from your doctor!

Pam Bush said...

Well said Al!!! I never thought of it that way. That just vecause she isn't in the trial anymore doesn't mean she didn't do her part in the trial. I hope that point of view cheers you a bit Chelsea!

Tiffany said...

Have you posted this situation on the melanoma.org boards? They might me able to help. I am shocked they would kick you out for such a shallow lesion. Many dems do not count in-stiu's as an actual melanoma.

Sooo sooo happy they caught this one in time! Prayers prayers prayers!

Julia said...

Stay strong and have faith. There is nothing much else you can do. You have to accept this is happening and you have to deal with it. When any bad thoughts pop into your head, imagine a stop sign, and stop those negative thoughts. Miracles can happen. BELIEVE!

Ashley said...

Thinking of you lovely lady! So glad you caught it before!

Ashley said...

Thinking of you, lovely lady! I'm so glad it was caught early!

Andrea R. said...

I just want to let you know that I think you are amazing!! I don't remember how I came across your blog but I'm hooked. Thank you for sharing. You are inspirational and so strong!!