I’ve heard the word’s “It’s cancer” too many times in my life.  About acquaintances, friends, and family.  Sadly, I know that’s true about the majority of the people in our society today.  It always makes me a little emotional, no matter who it’s affecting, however, with each pronouncement, my heart grows a little more calloused to the news.

This is, until it was Johnna.

I’ve done research. I’ve looked in just about every venue I can think of:  anthologies, self-help fiction, non-fiction, newspapers, magazines, google and yahoo.  You name it, I’ve probably looked there.  But no matter where you look there’s precious little out there to tell you where to turn for help, how to cope when it’s your identical twin, the other half of your heart, the better half of your soul who’s got the diagnosis.  There’s nothing to tell you how to breathe again when it’s your twin lying in a hospital bed, hooked up to machines and struggling to keep her eyes open while the nurse, dressed in head to toe brown protective gear so as to not burn her skin off, proceeds to put the very thing she’s trying to protect herself from into your sister.  I only half hear doctors as they talk to her about the next stage in “the plan” as if cancer is a house being built or a company being planned, rather than an uninvited home invader or corporate shark.  There’s nothing out there to help you focus your anger towards the disease rather than the doctors, the insurance companies, the rest of your family, or God-forbid, God.

How can there be so much out there to help people cope with cancer in a parent.  Or in a child.  Or in a friend.  Even in a co-worker?  But there’s no one willing to tackle the complexities of dealing with the potential loss of someone who used to be one embryo with you?  Someone with whom you’ve shared your entire life, from womb forward?  You can help soul-mates, classmates, workmates, teammates, roommates, and a plethora of other “mates”, but no one wants to expound on helping womb-mates?

Why is that?

My first published… anything… is live on the common ties page.  http://www.commonties.com/blog/wp-content/uploads/eternaltwins2.jpg

The password for the protected post is my normal password.  If you’re someone who knows my normal password, you’re someone I’m okay with reading the post right now.  I may un-protect it later, but the nature of a blog where I’m struggling with my twin’s cancer makes some of the posts a bit more personal.

Johnna’s MRI showed that the tumor isn’t growing.  But it also showed that it hasn’t changed.  At all. 

It’s funny how everyone can still be somewhat optimistic when, half-way through treatment we’re no better off than we were months ago.  I’m not doing so well at being so optimistic.

And with that, I think I’ve been withdrawing, and withdrawing too much.  With Dan and Chassidy’s eviction and subsequent move-in with mom, Jo and Gary, I’ve been avoiding going over there even more often.  And I’m so wrapped up in “my” Dan right now, and I know that’s not entirely healthy.  I know we’re engaging in more than little risky sexual behavior, and I know that I’m ignoring almost every other person in my life right now so that I can spend time with him.

But he’s one of the only people who doesn’t consistently ask me about Johnna.  And he never tries to offer advice or solutions.  Generally we just spend time together talking about ourselves and each other, or watching a movie, or immersing ourselves so much in each other that I can forget the rest of the world exists for a while.  He makes me feel like I’m the center of his universe, at least while we’re together. 

And I’m loving that feeling.  Loving it enough to push aside my morals/values/consciousness and get swept away by the force of his particular brand of distraction.

Before Johnna was diagnosed with synovial sarcoma, I never even knew such a thing existed.  It’s a pretty rare cancer and sarcomas in general are under-researched, under-funded, and patients and doctors are fairly under-educated on the specifics.

According to the National Cancer Institute, synovial sarcomas account for 500-1,000 of the 10,000 sarcoma cases diagnosed every year.  Contrast that with the 180,000+ new breast cancer cases, 185,000+ new cases of prostrate cancer, 215,000+cases of lung cancer, 54,000+ new cases of kidney cancer, etc. and you can tell that it is truly a rare cancer. 

Because of its rarety it makes it quite difficult to research or to really understand much of what’s going on.  She’s doing a clinical trial to try to find a stardized treatment plan for her type of tumor.

But we found out yesterday that, at least visably, the tumor appears to be growing, not shrinking.  She’ll go in for an MRI on Saturday to see what’s really going on.

But it’s not a promising thing.

If anyone’s interested in her personal journey, she blogs at http://reflectionsoftheheart.wordpress.com.

In April, 2008 my identical twin sister was diagnosed with aggressive, stage III synovial sarcoma.  This is my thoughts and insights as she and my family struggle with the disease that hit us like a train and took us all by surprise.