How am I?

I realize I owe you an answer to the question that I revolted against last week.  How am I?  Am I better? Is the chemo working?  When I sat down to answer that question last night, here’s what came out.  It sounds a little sad, but I’m not sad today.  It will be okay.  It will.

I didn’t know I’d live to see the Fall.

When I was diagnosed on June 16 (a date that will be forever etched in my mind, as the day my world came crashing down) it was somewhat of a death sentence.  Although the outlook is not as bleak as it once was, survival rates for women with my cancer — inflammatory breast cancer — are only 25-50% at 5 years; survivors at 10 years are still recounted by name (“Well, there’s Susan D, and Sally X, and they did it!” said in a falsely chipper voice).  90% of IBC survivors will suffer a recurrence.  Treatment is an ardous melange of chemotherapy, masectomy, more chemotherapy, perhaps a prophalactic masectomy on the other side, and radiation.  Often, the treatment goes in cycles, with survivors fighting the cancer and surviving chemotherapy for the rest of their lives.

Sometimes, there is no rest of their lives.  Because of delays in diagnosis and treatment, it is not uncommon for IBC survivors to not make it 3 months past diagnosis.

I have survived 3 months.  I am doing … well, I suppose, in that today I am not worse off than I was when I had my first chemo treatment.  I’m no better yet, but the spread of the cancer since diagnosis has been stopped (whoo-hoo!), and the inflammation is on the retreat.

I am tired.  My arm and upper chest hurt, from nerve damage or sheer muscle fatigue of hauling around this heavy cancerous tumor that once was my right breast.  My hair is gone.  My arms are bruised from the weekly needle sticks and IVs that are essential for the treatment and monitoring of the treatment.  (I don’t have a medi-port put in, for valid reasons having to do with the spread of IBC through cut skin.  It would make treatment easier, but perhaps less successful.  The survival rates for this disease did not rise from zero until they stopped cutting first and started treating with neoadjuvant chemotherapy, which means chemo first, then sugery.  So I have chosen not to have a port put in, to improve my chances.)  My fingernails are discolored and weakening.  My gums are dry and tender.  My eyebrows are falling out.

But I — me — the I inside — am doing well these days.  I’m up and around and going to playdates.  I’m holding my baby and hugging my child.  I’ve cared for my kids myself the past several days, with WonderDaddy’s help but not all the time.  I even cooked last night.

I’m getting better.

And my children are settling into this new normal.  Widget is less clingy, allowing Daddy to “put me down” to bed some nights, and letting Mama out of his sight for yoga and appointments at the cancer center.  We spent yesterday playing in the yard together, and I swear I overheard him talking earnestly to a butterfly.  Little Bear is growing up, too,  learning to walk, learning to drink from a cup, and laughing out loud with a chortle that makes all around laugh with him.  I’m learning to relax about it all, and I think that’s where we need to be.

And so now when people ask how I am, I think I’m emboldened enough to answer as my three year old does, although perhaps with less inflection, as he hits most notes on the scale with his response.  How am I?  “Pretty good.”

As the leaves in our forest turn yellow and begin to singe with red, “pretty good” is an outcome that I can live with.