...And I will bitch about it if I want to.
Recently a person that I have to (unfortunately) remain pleasant to indirectly insulted me on her Facebook page. After having posted my blog discussing my cancerversary party, she posted a status update that basically said that I, without mentioning me by name, should stop talking about my experience, that she knows it has been a tough year but we all have them, it is over, so stop talking about myself, and simply be thankful to be alive. Obviously I am not an idiot and realized it was her (drunken) jab at me. (She actually posted that she wanted to make me cry. Mature.) I debated long and hard if I should sink to her level and respond to it or simply let it go. It was Friday the 13th and I was in no mood to take bullshit. So, I responded....
And then she deleted me.
It got me thinking though.
Melanoma is an odd disease. It does not go away. Ever. Sure, you can--and want to--show No Evidence of Disease--but that does not mean that you no longer have melanoma. It simply means that you are in the maintenance phase of blood work, scans, and hopefully, as my oncologist kindly refers to them, "healthy baby check-up appointments" It does not mean that your run in with cancer is over.
Although what Mrs. Home Girl referred to as my tough year is over, I continue to fight to stay ahead of this disease. I can't skip a 3 month scan because I am busy at work. I can't claim remission and go back to living the life I used to live. It just does not work that way. Someone else may see my fight with cancer as being over because I am not having surgeries every other month or heading to the oncologist numerous times a week, but that is where they are wrong. For 3 months at a time, I can start to feel a little secure that I am healthy. 3 months until the anxiety returns.
Ironically, I have received a few emails recently from fellow melanoma warriors who state that they also "had" melanoma. This makes me nervous. Does their use of the past tense mean they believe they are in the clear? Do they follow up with their oncologists? Do they monitor their blood work? Or will they be the folks who find out about their reoccurance too late?
I decided it was time to ask my fellow warriors how they describe their melanoma. Do they say that they have Stage ___ Melanoma or do they say that they had Stage __Melanoma.
My most favorite responses thus far were these:
"I say have. I may have clear scans for the moment but since you are never in remission with melanoma... it's current to me."
"Interesting topic...I usually say. "I was diagnosed at stage IIIB in 2008." This is certainly a sneaky beast. Maybe using the past tense gives people the sense of stability in an uncertain situation."
"Chelsea- as you know I have been on chemo for the last 2 years and been NED for most of those 2 years. I get asked ALL.THE.TIME if I am in remission. My answer is always no. With Melanoma I will probably never be "in remission" I will always be on some sort of chemo and I will forever battle Melanoma. That's just the new normal for me. I'm ok with it. Kind of..."
I know that people not directly affected by my experience probably do get annoyed with my constant postings about articles or videos regarding melanoma especially since they believe I am going to be just fine and that it is time to move on. This is why Facebook has a defriend option thought, right? At the same time, I know that I have many friends who appreciate my posts. Besides, this is my cancer. Until you walk in my shoes, you can't tell me how to act.
Bottom line, let us all remain vigilant and continue to educate until there is no more educating to be done. Let us live our lives in the way that we know best.
(Oh, and let us have the ability to kick the people who bring us down out of our lives.)
"But understand this: my commitment to living in the now means I'll never ever say that I've beaten cancer. To do so would be living in the "tomorrow," if you will, and melanoma is far too erratic an opponent to go around making predictions. But I can tell you for sure that I'll never give in to it. Life is too precious to give it up without giving everything you've got -- now."
Dr. Jack Ramsay.