Sunday, January 15, 2012

It's My Cancer...

 ...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.


Trudy Jane said...

Oh boy, another hitting it on the head. I had a decent 2011, but I think I am in a bit of trouble as I type. This is what melanoma is about, sneaking in, hitting hard and before you know it..."I'm back, I'm home". So, you go right ahead and tell everyone you can. There are so many people who really are clueless....people who you would think should know better. Trouble about FB friends, not all of them are....nuff said. xo

Becca said...

OMG I can't believe someone would be so hurtful and selfish to say those things to you and to WANT to make you cry. All I've got to say about her is that she's got some HUGE life lessons in store for her, and karma's a bitch. As for me, I started telling people I was in remission because I didn't know how else to explain it. The thing is, they just don't understand about Melanoma, how it hides in the body, sometimes for years, so you're never cured of it. I get tired of trying to explain it to people because they look at me as if I'm just trying to make my cancer seem worse than it is. It's so frustrating I just give up, but I shouldn't. So I guess for now I say I'm "clear" but being closely watched by my doctors. They just don't understand, Chels, and they won't... until it happens to them or someone they love.

Chelsea said...

Oh, Trudy. You are so right. I will be praying that the trouble you suspect is nothing too serious. Love you!

Chelsea said...

I know, Becca....I know. It's just hard to deal with sometimes. I also know that in this situation, jealousy plays a big part of why she said what she said. I may have cancer, but at least I do not have a miserable life.

Carol Taylor said...

You keep living your life. From where I seat, in the cheap seats, you're doing mighty fine and are a true blessing. Maybe that person was jealous of what you have and who you are (and I'm not talking about having the melanoma).

StanN said...

Chelsea, crazy, About your deleted FB friend comments, It's called "your " status updates for a reason...hello....your page should be all about you,if it's not then I would think thre is something worng with you. Many people have no idea or clue about melanoma,and frankly I get tired of trying to educate them...I think your doing great on yur blog and FB,your ot preaching, your just putting the facts out there more power to ya,
stan n

Wendy said...

It's YOUR status and YOUR FB page! I personlly enjoy reading your updates on your FB and your blog. I think part of the healing process in the ability to express YOUR feelings and those are YOUR forums to do so! You keep on and know that you have MANY more supporters than the one inappropriate person that obviously has issues of her own.

sherena said...

Chelsea, Never give up on your Truth!!! Others who have no experience with cancer, have no idea how it changes the way we think, act, and LIVE.

Keep doing what your doing.

Another Mole Mate,

blamb320 said...

I am trying to do as Rev. Carol says above and keep living my life. I do pretty well and am lucky that I am able to consume myself with work. I am lucky that depending on how I feel I can work in my office or if I am feeling well I put on my tool belt and go work on job sites (which is what i prefer to do). I was originally diagnosed in June '09. I had a couple of surgeries and in Oct '09 I went on a double blind study for Ipi. For 15 months nothing happened. I was being scanned ever 2-3 months and having infusions, etc. I was living life just as if nothing had happened. The surgeries were major and the seat time in the infusion room was real, but I didnt see myself as 'being one of them'. At the time I was 29 and couldnt be convinced I wouldnt live for ever.

I took myself to my scans/appointments b/c it was no big deal. I guess I 'had' cancer in my opinion.. On my mothers birthday, Jan 4, 2011 I had to call her and tell her my cancer had spread to my lungs. So more surgery in feb. Then I 'had' cancer again from april, may, and june of 2011. In July, once again, I 'have' cancer. More surgery on July 22. I managed to make it back to work for roughly a week before a 'muscle strain' revealed the fact that my disease was in my chest, on my ribs, in both of my lungs, my spine, and my liver was basically replaced with 7 tumors. Have or had? I think the uneducated and/or lucky are able to use 'had'. I know a few who use it as a coping mechanism and thats fine. As for me, I will always have melanoma.

Long and short of it, tell your 'friend' to kiss my big white irish ass.

Susieclues said...

So many do not understand this disease. No EOD does not eliminate the anxiety of scans and the fear that it will rear its ugly head. Blamb320 is right on the money with this "Have or had? I think the uneducated and/or lucky are able to use 'had'. I know a few who use it as a coping mechanism and thats fine. As for me, I will always have melanoma."

It drove my daughter and myself crazy when people would say how lucky she was that she was in "remission". When we would try to explain to them that there is no remission, just NED, they looked at us like we were making a big deal out of nothing. It was very frustrating dealing with people who did not understand, nor cared to try to understand. Personally, I am glad your uncompassionate "friend" unfriended you! The fear of the Melanoma reshowing up on a scan was always in the back of my daughters mind. One with Melanoma hopes that they go their lifetime with NED but someone who has never dealt with this beast will ever know what it is like to experience it first hand nor should they ever judge another who has.

Keep posting my friend, whatever and whenever you want to. Those who truly are your supporters encourage you to type away! It is YOUR journey, not theirs.

Gary said...

Chelsea, I am not a fellow warrior, but did recently have a malignant melanoma mole removed from my leg. It was in situ when it was removed, but there was evidence that it or something had penetrated .44 mm (thankfully not deep) but had regressed. My plastic surgeon went out 1 cm on each side and took it out down to the muscle to make sure he got it all. Anyway, to get to my point, before hearing that my mole was melanoma, I was like most everyone else, okay so I have melanoma, just cut the chunk out and get on with life. Well after finding out my mole was malignant, I googled melanoma and WOW, boy was I wrong!!! Reading all the blogs scared the crap out of me, but also educated me, and I try to use them to educate my friends and family to what an evil sob melanoma is, and to give it the respect it unfortunately deserves, by avoiding tanning beds and being careful in the sun, and if they won't, at least keep an eye on their bodies and see a dermatologist once a year. Anyway, your blog is definitely one I refer them too, you are such a great writer and relay a lot of great information, so please keep up the updates coming! As for your so called FB friend, have her read Randi's blog to see just how over one can be with melanoma! As far as the cancerversary blog goes, I thought it was awesome, and after what you have been through and are still going through, so very well deserved!!! Thanks for sharing your experiences, they do make a difference!!!!!


Brittany said...

GO GIRL!! I was happy to read that you commented back. She has NO idea and is just living in her own little world. She obviously has major issues herself. haha!!

scot said...

I'm stage II 1 year NED. Every time someone asks how I'm doing or about the latest scan I go into a long drawn out explanation because most people don't understand or know about Melanoma. Just because I'm looking and feeling better dose not mean I can forget about it. Keep doing what your doing because it does make a difference to me and a lot of other people. Just by the number of replies to this post you can tell that a lot of people feel the way you do.



Chelsea said...

Thank you ALL for your comments. I love hearing from readers and fellow molemates! I was a bit angry when I wrote this post so I am glad you all understand.

We ARE making a difference...I know it.

Unknown said...

It really didn't occur to me that you're stuck with melanoma your whole life once you get it, I had no idea whatsoever. I probably would've been one of those annoying people saying "So, I heard you're in remission" I say thank you for educating and just letting you know, you definitely are making a difference, that's for sure!

Good on you and I hope you keep trying to make a difference and raise awareness, regardless of what ignorant people say!

Hiness58 said...

Being released from my surgical oncologist today should have been sweet instead of scary after six years. I know more than anyone that it can reoccur at any time. But the doctor knows that I will continue to be wary of any place or any odd behaviors of my body. I do know that I can't say I HAD melanoma. I have it, it's waiting, and hopefully will leave me and all my other melanoma warriors alone!! So I hope that I can make a difference for those of us that didn't make it. Change those opinions, make people know that it's not "just skin cancer"!