What it's going to be like

Now that I am almost seeing the light of day after the surgery, I am gearing up for chemo.  It's not scheduled to start until the week after Memorial Day so I still have some breathing room.  

Just as before the surgery, my time spent ramping up to the chemo is spent playing incessant What If scenarios. I have to keep telling myself that I feel different every day: next week will be hugely different from this week; the week after will be far different still.  Which means I can't accurately predict anything, not that I could anyway.

My best secondary therapy is going to be hormonal therapy because the tumors tested very hormone positive, which meant they love that estrogen.  This means that it's possible the chemo will have small to maybe no benefit.  Possibly.  But we don't know.

This messes with my head. I want my doctor to crunch the specific numbers and I want to know what I'm buying for the risk.  The temporary side effects I can deal with. I will grieve the hair loss a lot. But if it's all just temporary and I buy myself some good numbers, ok, I'm in.  But... If I could lose the use of my fingers and feet, or I could injure my heart or bones, just for a statistical advantage that really doesn't mean anything concrete anyway... I have to really think about that.  It's weighing one set of unknown variables and probabilities against another set and, at the end of the day, I just don't know when that bullet with my name on it will come my way.  Or whether it will have anything remotely to do with breast cancer.

The statistics are not reality, of course. They would only make sense if you could clone 20,000 of me, and then throw a single variable at them. At that point I'd have a valid probability curve for myself as an individual. But that isn't possible. For all these people on all these studies there are wide variations of lifestyle, attitude, age and other variables. So I'm sure the math works out statistically in broad strokes, but in terms of predicting for me, specifically? I wonder.

I wonder a lot.  What will it be like to lose my hair?  We walked by a beautiful African American woman today, wearing a beautiful shawl and skirt and some fabulous jewelry and sporting a shaved head and I thought, damn, if I looked THAT good I'd be totally down with this thing.  But most of the time I think about it and grieve.

How will I respond to the chemo?  I just don't know.  Will something happen that I'll regret?  Is there stuff I don't know about that I will have to find out the hard way?  I don't know those answers yet either.

Crazymaking. I'm a Virgo (as my fellow Virgo friends like to point out) and we Virgos like organization.  We like to pretty much know what's coming down the pike next.  But in this situation, with everything jumping out at me like a fun house arcade, I just don't have a clue.

But I have been doing this now for almost two months.  I have a bit of a track record with chaos and can maybe guess how things work in this new upsidedownland I'm in.

Take the mastectomy itself.  For the month before the surgery, I was just aching with grief over my soon-to-be-removed body part.  It was my sacrificial lamb, the part of me I was going to have to give up to live longer.  It had served its first purpose for nourishing my children a long time ago.  And now I would give it up once again to keep taking care of them.  

After the surgery, I couldn't look at the scar.  But, when I finally did... it was (almost) fine.  Really.  Yes, it was different, but I was still ME.  I was still intact.  That area was still a part of me.  And... thanks to a bit of reconstruction... it will be a part of me that I will have earned laboriously and of which I will feel very happy and proud.

Walking around, I did not feel mutilated or less than.  In a really weird, but kind of sweet way... half of me felt eight years old again.  With that kind of freedom that a little kid has in the chest area.  It felt like the days when I could wear little sun suits and not worry about conspicuous bobbling and jiggling.  I mean, sure I would've preferred not to have this happen. But my reaction after the fact was extremely surprising: I am actually OK with this.  (And as Roger pointed out, if I wanted to go for that sex change operation, boy, I'm already a third of the way there.)

It's all about the way we look at it in real time.

So who knows what my reaction will be to anything?  I don't, that's for sure.  I think it will be one way, and it's always something completely different. The first two weeks after surgery were relatively peaceful, but now I'm getting walloped when I'm feeling better.  Go figure!  Who knew?

Gotta live in the uncertainty, man.  As this blog is named... we have to live into the answer.  We just don't know how anything is.  It's nerve wracking.  It is SO annoying to us Virgos.  We can't organize this thing into predictability.

All I can do it take every minute, every moment, and try to deal with it as it really is.  That is actually plenty challenging.  We don't know what it's going to be like. But.. given the option of time travel...would we really want to go into the future?  I think not.  I really think not. The only way to find out what it's going to be like is the old fashioned way: step by step, moment by moment, breath by breath.