June 25, 2012

Survival Skills

Two years ago was my diagnosis.  I am a "2-year survivor".

Last night Ben asked me if it was worth it.  My first reaction was a surprised laugh.  Then it got heavy.  The answer is "yes", but it's a harder answer than I wish it was.

I wish this was an inspiring tale of how I finished my grueling treatment (about a year's worth), got back into life, and conquered the world.  You know, finished a triathlon or climbed a mountain.  Raised tens of thousands of dollars for charity. The stuff of the inspirational movies and books.

But I am no poster child.  My 2 years have been a one-step-forward, one-step-back kind of story.  I am not done with it.  Sometimes I get angry that only the pretty picture is put forward, not the one that involves the chronic illness side of things.  I've talked to other survivors, and the easy answer they all give is that they are fine.  There is little sense of permission in the world to not be fine when the worst of it is over, and especially not permission to share that and be vocal.  I feel that many times, too (but I'm getting over it for this post).

We are managing.  It is worth it because at the end of the day, a get more time with the people I love and want to be around.  But I want to be further along than I am--I keep waiting for the end of the tunnel, because I have seen light for a while but am still too far away to be standing in it.  This was the time when things were supposed to be back to normal and the worst of the longer effects would be done.

So here is where I'm at:

My day-to-day is fairly normal in many senses.  I can go along pretty well, my cognition is mostly back where I want it with some very mild short-term memory issues.  My energy can sustain me through the day, but when I'm done at night, I'm done.  I am totally spent.  My body aches, and I become tender to the touch in my surgical area/chest.  Sleep is either like a rock or really restless with little in between, and Ben says I snore worse than I ever have and we wind up sleeping apart sometimes because of it.  I can sleep in 2 positions--on my back or on my left side, and I need to try to keep my right arm elevated in either position.  Which brings me to the right arm.  The lymphedema is still going strong, making it big and puffy, heavy, and sometimes achy in the joints.  It has resisted efforts with OT so far to get the swelling down and keep it down, especially in my hand.  I have to wear compression garments (glove and sleeve) day and night, though sometimes I take breaks because I am sick of it.  I have manual drainage to do on a daily basis (if I can muster up the gumption).

I've had that, shingles x2, and the doozy of a cellulitis infection in my right arm.  My arm is "immunocompromised" even if the rest of me is not.  I am limited in my physical activity, am having a hard time lifting Olive, and I just realized the other day that I will likely never be able to get back to direct bedside nursing because of lifting restrictions.

It's a regular process of adjusting expectations.  But I guess I'm stubborn.

What am I doing that is good?  Well, I've been getting to do things with some good friends when I can.  I'm trying to get to yoga once a week, and I hope I can work up to twice weekly, and then taking the evening to myself.  I've been working hard--maybe a little too hard.  Getting in a lot of Olive time.

What do I need to work on?  As I said, at night I am just spent.  That has meant I have crapped out on a lot of phone conversations, catching up with my family, keeping up with holidays and birthdays.  That makes me feel kinda shitty.  I have another pile of things waiting to be taken care of that I just haven't gotten to--it's plenty to get Olive to bed, do dishes/laundry, and then space out before I go to bed.  I hope the people that know and love me can forgive me for checking out and being inconsistent for the last couple of years.  It means the world to me to have felt the love an support I have, and I hope I get back to where I am fully reciprocating.

And then there is the looming worry about recurrence.  There is no good feeling about having the sword of Damocles over your head.  The best picture that I have been given is that if I can make it through one more year without recurrence, I will be at much lower risk.  That makes for a very strange year of waiting for the other shoe to drop.  There is a part of me that always needs to keep that in my head so I could be prepared.  I can't even commit to getting a dog right now.

Okay, that's enough.  There are so many lovely things in life.  I have fought hard to see them, and I have earned every small moment of goodness I can savor.  I will savor the love that has poured out to me from so many good people.  I will keep working on being the person I want to be.

I hope the road to get there is long.