Monday, June 4, 2012

Cancer's best-kept secret

I've recently discovered that cancer has many, many secrets. I'm not talking about the medical ones, the ones best left to researchers and doctors. I'm talking about the ones hidden from everyone - researchers, doctors, caregivers, and yes, patients and even survivors. The secrets that are rarely brought out in the open. The ones that are hidden behind the curtains, under the blankets, and even under our clothes.

I think I know why this is so. I think it's because only other cancer patients and survivors really, truly get it. To an extent, those with some chronic conditions or who have been through life-threatening illnesses do too, but cancer is its own beast. There are far too many preconceived notions about what it means to have cancer and what it means to be a survivor, and the media isn't necessarily helpful, because so many of us are portrayed as overwhelmingly positive, as WARRIORS (caps because that's how it always comes across to me), as somehow out of the ordinary.

The truth is, people who are diagnosed with cancer are ordinary folks like you and me who've had some crap luck. I've looked at people who portray themselves, or who are portrayed in the media, as “warriors,” “fighters,” etc. and who seem so positive, and now I know there’s more to it, because I've been told repeatedly that’s how I look from the outside. I honestly had no idea, because I’m here, in my head, living the truth. And the truth is, I don’t see myself as a warrior, or a fighter, or any of those things, and I’m far from upbeat and positive!

I've learned that when active treatment comes to an end, many people hit the wall of grief, and all the emotions that were suppressed due to the “busy-ness” of being a patient come roaring back. My husband told me the other night that the day of my mastectomy, he was floored at how I strode in (tiara and all) and owned that room. How I was just able to DO something so massive. But he’s realized now, as I am (not so) slowly falling to pieces, that what I was actually doing is not looking to either side or behind, but just putting one foot in front of the other, plowing through each step as I confronted it. It’s only now that I have time to take off the blinders, blink in the sunshine and think “holy hell, what have I been through?”

I am not happy with my body. My entire torso has been rearranged - while one day I'm sure I'll be pleased with the flat tummy and less-flabby hips (I had fat liposuctioned for a graft to my upper left chest), right now I'm still in pain, can't shop for pants that fit, and have to wear an extremely uncomfortable compression garment for four more days. And the foobs. Ah, the foobs. Someone told me that they were sad that I felt it necessary to call them that, but that's what they are. They are (mostly) breast skin, over abdominal fat/blood vessels. I no longer have nipples, but rather abdominal skin built to look like them. They are still the color of the rest of it, and the left one was just made, so I still have stitches there. I have no feeling, and I never will - this isn't like many surgeries where feeling comes back eventually; a mastectomy means the total loss of a major erogenous zone. Another secret - this is something you're told prior to surgery, but nothing can prepare anyone for this reality. Four months out from my surgery and I still can't assimilate it. Hell, I can barely assimilate that I had cancer in the first place! My husband tells me that I keep saying the words as though I've just discovered it, which in a way is true. Over and over I'm assaulted by this mass of flesh on my chest that doesn't feel like a part of me. (It doesn't help that I had a great rack before, either!) My goal is to reach acceptance one day. Even my therapist agrees that acceptance may be the best I can ask for - but it beats the hell out of the place I'm in now.

I told both my husband and son that I feel selfish. That I’m terrified everyone is going to get sick of me. I said that it’s my job to be the best wife, mother, friend, forum moderator, employee (insert other roles here) that I can be, and to be there and strong for everyone else. It’s what I DO. I don’t know another way to be - to tell the truth that I’m falling apart, that I’m scared to death of the magnitude of my own grief, that I felt as though I was heading toward a break with reality recently? That’s the stuff of my nightmares. Putting it out, making the choice not to hide it, takes just about everything I’ve got. My public face snaps into place without conscious thought on my part - I'm told that I'm one of the most "together" people some of my friends have ever met, and I don't know what to do with that information when it doesn't match what's going on in my head and heart.

My therapist gave me homework today:
  1. Stop analyzing everything to death. If I catch the cycle starting, yell “STOP” in my head, or even out loud if I need to. 
  2. Take naps. Naps are not “giving in” to depression, they are healing. 
  3. Make things. I have a head stuffed with creative ideas, but I haven’t managed the energy to translate them from ideas to THINGS.
  4. Journal, journal, journal. Which for me will be blogging, but that’s good too.
  5. Take a break from all things CANCER once in awhile, which includes not sitting in front of the computer so much.
Along those lines, I hope to blog more often, as part of the above homework. It helps to know others are reading, and to hear that my words make a difference out there.


debbie hagen said...

Melissa, repeat after me, "I can be a bitch, a whiner, a complainer,or anything else I choose to be". In fact, write this down and post it wherever you can see it thirty times a day (since I'll assume you have by now covered over all your mirrors). And when you have said it thirty times, say it thirty times more. THERE IS ABSOLUTELY NO REASON THAT YOU HAVE TO TRY TO BE POSITIVE ABOUT ANY PART OF THIS (except when you want to). The very least we can do for you is to let you be a whiny, complaining bitch. (You aren't, nor ever could be , but I won't try to dissuade you at this point) It is all part of the crappy process you are in. Sounds like you have a great therapist, and sounds like your wonderful husband is being as wonderful as ever. You will be better than you are again, you will. Until then, I stand in honor of the work you are doing,sharing, writing, screaming about, and wish my arms were long enough to hug you from here. Since they are not, consider this a big <>!
Peace and rainbows,debbie h.

Heather said...

Uhm... I have had some success with chi gung to help with crazy impossible healing if you want some. If we can manage a trip down there I might be able to help a little bit, maybe. There have been some interesting studies on Chi Gung healing that I have followed.

Anything to help.

wintermoon said...

I remind myself all the time that I can't know what it's like to have cancer because I've never had it. No matter how many of my friends and family have had it, I'm still an outsider to that (and grateful for it). Reading your blog, though, helps me understand it better than I ever have before. In reading your words, I begin to grok just how much I don't get it, and I begin to have more sympathy and understanding for my loved ones who've dealt with cancer. Some are healthy now. Some are still fighting, still searching for a cancer free status again. Some are no longer with us.

Now I imagine that many of them, at some time or another, had the same struggles, worries, concerns, fears, etc. that you've had. Those who seemed so brave, now I know that they probably had fears inside that they didn't feel they could share. Those who seemed to give up and give in to the cancer, well, there was one, and I'm sure someday I'll stop being angry with her.

I don't know if these are comments that are at all helpful to you. I guess I worry sometimes that my sentiments of love and mojo and hugs and permission to express exactly how you feel are ... I don't know... trite? Obvious? Of course I love you. you know that. And of course I'm sending hugs and mojo and want you to heal well and be happy and content with life again. And of course I wish there were more that I could do, and I hope you find acceptance sooner rather than later. These are things all your friends are doing because we all love you.

But you seem worried about not being enough for other people, and I guess I just wanted to let you know that you are still doing and being amazing things for so many people. I don't know how many other cancer patients/survivors you might be reaching in your various groups, and I don't know personally how much you might be affecting or inspiring your local friends. What I do know is that you've been an amazing friend to me, and have been very inspiring to me. I have seen you on Rav, and how you interact with people and the way you present yourself, and I think it's amazing. I know I can't be the only non-cancer patient to learn from the amazingly personal stuff you're sharing here and I am endlessly grateful for it. I see how you encourage others and cheer people on and send out mojo selflessly, when you could be sitting on your couch feeling sorry for yourself or even being angry at the cancer free people. I know the things you talk about regarding your husband and son, and I've seen you with them, and I have no doubt whatsoever that you are an amazing wife and mother to them.

So yeah, love and hugs.

The Accidental Amazon said...

Dahling, if it weren't for bitching and snarking about this, I'd be a basket case. Tell THAT to your therapist. Distractions are fine, but if you don't get it out, it sits in there & festers.

We sistahs will never get sick of hearing what you have to say.

xoxo, Kathi

caroline said...

what Debbie H. said. I got nuthin' but the virtual hugs I send you. I've been reading your blog/journal all these long months. Woman, you are entirely entitled to any number of meltdowns. Take your time and please, please, keep talking to us. I'm pulling for you as much now as before.