What We Don't Like To Talk About

Since it is Halloween, I thought I would discuss a scary topic...Recurrence.

Most people are under the impression that when you are diagnosed with melanoma, a doctor will "cut" the melanoma out, and "you will be fine." I have been told that over and over again. Here's the thing: That is not always true. Even if you catch melanoma in the early stages, there is a slight chance that it will come back. When melanoma returns, it is called a Recurrence.

Melanoma warriors hate the idea of a recurrence. Obviously, right? I know what you are thinking. The likelihood of melanoma returning after you "beat" it is slim. Wrong! According to MD Anderson Cancer Center, "Melanoma patients have a high risk of developing new melanomas. Some also are at risk of a recurrence of the original melanoma in nearby skin or in other parts of the body."

Since I am stage III, I am going to discuss the likelihood of me having a recurrence. While trying to find reliable sources to find statistics since I do not know the actual numbers (I try to ignore these scary numbers) I found this depressing statement. On the American Cancer Society's page discussing melanoma, it discusses using adjuvant therapy with interferon to help "fight off recurrence longer."

OK...maybe I am being fussy, but I absolutely hate the way that they have worded the above statement. I am all about positive thinking...I guess this is why I do not look at these sites, huh?

Anyway, proof that recurrence is likely is in their use of the word "longer." If recurrence was not popular, I believe they would have simply said, "...using adjuvant therapy with interferon to help fight off recurrence." Maybe I am getting too upset about their use of the word "longer." Maybe....

According to the Melanoma Research Foundation, the risk of recurrence depends on a few things:
"thickness of the primary tumor, with thicker tumors carrying greater risk than thin tumors, the presence of ulceration in the primary tumor and the presence of satellite metastases surrounding the primary tumor. The probability that melanoma will recur after appropriate treatment is characterized as low- intermediate-risk, or high-risk.

• Low-risk: less than 20% risk of recurrence
• Intermediate-risk: 20-50% risk of recurrence
• High-risk: greater than 50% risk of recurrence. High-risk melanoma has a high probability of having already spread to local or distant sites at the time of treatment." (article here.)

My doctors have told me that it is likely that I will have a recurrence in the next two years OR never again. No one knows. I could go 50 years and then find another funky spot...or I could find a new one on Wednesday....or melanoma could be found in my organs. Melanoma tends to love lungs, livers, and brains. Scary enough for you?

If you would like to view other scary statistics, click here. My 5-year Relative Survival (%) is 61.7. Improvement! When I first started viewing the statistics, before my doctors warned me against looking at them, my 5-year survival rate was somewhere in the 50% range.

Next time you hear of someone having melanoma, please be sensitive. It is not "just" skin cancer. It is scary. It is a guessing game for even the medical world. It is my version of The Wicked Witch...How dare melanoma try to take my happiness!

My red slippers are on & I am ready to fight.

Pink October

 BEAT Cancer

There is one last day in this very Pink October, so I feel like it is my duty to remind people that "for women carrying a specific breast cancer susceptibility gene, the presence of abnormalities in the gene doubles the risk of melanoma."

It sure would stink to beat breast cancer and then get diagnosed with melanoma, especially advanced melanoma. I feel certain that their cancer experiences would be completely different....Not exactly different in a good way either....

How could they prevent themselves from joining us in Hotel Melanoma?

According to The Skin Cancer Foundation, breast cancer patients and survivors should:

Beware of photosensitivity. 
    "Photosensitivity is an increased sensitivity or abnormal response of the skin to sunlight or artificial ultraviolet (UV) light; people with photosensitivity are at increased risk of developing skin cancers. Photosensitivity can be caused by certain medical conditions and treatments, and breast cancer patients should find out if their treatments could make them photosensitive."

*Beware, a lot of medications cause people to become photosensitive!

Be Screened & Perform Self Exams:
     You know how you feel your boobies for lumps? Check your skin for changes! If caught early, melanoma is easily treatable. According to Melanoma Research Foundation, the median lifespan for patients with advanced melanoma is less than one year.


Speaking of statistics.... Let me remind you that "Melanoma primarily affects individuals in the prime years of life and is the most common form of cancer for young adults 25-29 years old and the second most common cancer in adolescents and young adults 15-29 years old." (See other statistics here.)

So, while I encourage you to continue to be Pink if that is a cause that is important to you, be smart. Melanoma is highly treatable if detected early. Do not pay attention to your boobies and ignore that "just not right" mole. Be proactive.

Or you could end up with these...

You do NOT want to end up here.

(Even in NYC, 

people look at you funny

when you have drains coming out of you.

Trust me.)

Sidenote: I just searched "Melanoma" on Pinterest to see if there were any new inspiring photos to include in this blog post. What did I find? A picture of my own scar! Someone "Pinned" my back scar picture, linking it to my blog. Cool! (But it did totally catch me off guard...)

Walking For A Cure!

a

Do you think he's wearing sunscreen?

If not, as my sister pointed out,

he will be bacon soon enough!

As most of you know, I am participating in the Aim at Melanoma walk in Charlotte, NC on November 19th. I am so excited to be a part of this for quite a few reasons. Obviously, melanoma is important to me so anything that raises money for research is something that I wish to participate in. Another reason I am excited is because one of the first melanoma warriors I bonded with is Mrs. Anne. She is the fabulous (seriously...she is wonderful) lady who organized this walk in just a few months.Anne has also raised a big chunk of change to be donated to the organization. Like I said, she's awesome. 

Yesterday she let a great piece of information leak: On November 19th at the AIM for a CURE Melanoma walk in Charlotte, there will be FREE skin checks from 8am-11am provided by Charlotte Dermatology! Before you start to get anxiety about strangers seeing you get checked, the skin checks will take place in a mobile hospital until provided by Carolinas Healthcare Systems, Levine Cancer Institute, and Carolinas MED-1.

I hope to see you there! If you cannot make it, I hope you will mention this great organization to others and encourage them to check it out.

And Anne, I so admire you for your hard work, dedication, and beautiful spirit. I am SO excited to meet you in less than a month!

Now.

 

pinterest 

I know that I have complained a time or two about how my biggest concern should not be cancer.

My biggest concern, at 24 years old, should be finding my dream job, gaining even more independence, and enjoying my 20's. Instead, well, you know what my life has been like since January. I could be bitter, I could be royally pissed off (and I am both sometimes! especially scan week!) but instead, I see this year as being both the worst and best year of my life.

Yes, the year I got diagnosed with stage III melanoma has been one of the best--most eye opening--years of my life. Because of my diagnosis, I stopped floating through life. I have a purpose now in a way that I did not have before. I am going to fight melanoma not only for myself, but I am going to fight for everyone it has taken from us. I am going to fight in terms of education, publicity, and personally, I am going to fight it from attacking my body. I did not have that purpose prior to January. I always admired people who stood up for themselves despite what others may say about them, but I never had a cause I felt so strongly about. Now I do. 

I have the courage. I have the belief. And I have the determination. 

You, Evil Melanoma, have consumed a lot of my time, energy, and happiness; however, you are leading me to be who I am meant to be.

Restless Nights

And the scanxiety begins...

If you have any experience with scheduled CT scans/MRI's, you know what Scanxiety feels like. I try to talk myself out of it, I tell myself that I have no reason to be paranoid about the upcoming scans; however, my mind still focuses on it. I become grumpy. I get headaches. I become snappy. And I definitely stop sleeping through the night...no matter how exhausted I am!

This time next week I will be packing my bags to head to New York City. On Wednesday, October 2nd, I fly to NJ to meet Mom. I have scans on Thursday, results and treatment on Friday. It is hard to believe my 3 months of freedom have already passed. The last time I went to NYC, the clear scans were such a relief, but I had a hard few weeks after I returned home. I am nervous that now that I have started living my life again, things will come crashing down. I fully believe that if I were to receive "dirty" scan results, I would have a harder time accepting it now than I did in January. In January, I was totally caught off guard when Dr. Cool Guy came in and gave me the less than desirable news that the mole he removed was melanoma. This time, although I am hoping for the best, I have to prepare myself for the worst. You know, just in case...

The lack of sleep is probably also because I am worried about my Pop's surgery on November 2nd. Tomorrow he goes in for a stress test--we've been through this before where they found a blockage and ended up having to do a double bypass surgery--and I am anxious to hear good news regarding that. Prayers please.

I am a bit bummed today. My mom had gotten tickets to be a part of the taping of Anderson Cooper's show on Thursday; however, due to scheduling conflicts, we will not be able to go. Because ipi/yervoy is known to cause inflammation of the eye, I have to see an eye doc while at Sloan Kettering. Originally I was supposed to see the eye doctor in the afternoon, but they have changed the appointment. Sooooooooo, no Silver Fox for me! I know that I should be grateful for the wonderful care that I am receiving, and I am, but I really hate that my mom went through the trouble of trying to plan fun things for us to do and we aren't able to do it. Mom always tries to make my trips to NYC more than just medical appointments. Like I have said before, she is the best. Let's hope my eye doc is as adorable as Mr. Cooper!

Here's what I have to say to melanoma tonight:

Melanoma, I'm coming after you...again!

Life, Love, and A Whole Lot of Fun

As I mentioned in the quick post last night, I traveled home to "The Shore" this past weekend with Mr. Spots and his little boy. It was my niece's 5th birthday, my sister's 30th birthday, and the last time I would see my Pop before his upcoming surgery. Unfortunately, Pop is having surgery on the day I fly to NYC for my latest set of scans & treatment. Prayers and good juju needed for our family that week, please! We had a great weekend visiting with everyone.

My Momma, Granny, Sisters, and my niece!

Oh, and Louis!!

Mr. Spots.

It has been a difficult year on us,

but I can say, 

we are 100% stronger than we ever have been.

Take that, melanoma.

The kiddos in my life.

My sisters really are that fun.

Although the weekend passed too quickly, I truly enjoyed visiting with them. No time with family is ever enough, right? I like to share certain details about my life because I want people to remember that I am not just a girl with melanoma. I am a girl with a real--often dramatic--life. I am not miserable. I am not always depressed. I am an average 24 year old girl who has advanced melanoma. It could totally be worse. I refuse to let this cancer take the rest of my happy spirit. I will continue to have moments, nights of restless sleep, because of this cancer. However, I will not, as I am proving, stop living my life. I am too darn stubborn for that. I am a face of melanoma....

which brings me to this website: http://facesofstupidcancer.tumblr.com/  Check it out. It's great. It is a website full of stories of people with cancer. Unlike some of the other sites I have seen, this one is uplifting. Thanks to the great girl who emailed it to me!

Oh, and for the record....

http://pinterest.com/pin/365457985/

Strangers

I traveled home to visit my family this weekend so I am far too tired to write a real post; however, I saw this picture on Pinterest and felt like it was appropriate to share. The strangers I have "met" recently have given me such comfort, such love, and such meaning. For that, I will always be thankful.



Now....it is bed time!