My new favorite book

Yes, more from the "Dancing in Limbo".

"This is grief, and it is running parallel to our daily life.  When we are grieving, we feel beside life, not really in it.  We eat but do not taste the food; we sleep but not well.  We go through the motions of love and work and play, but we are barely there.  Even worse than feeling half-dead are the silent secret moments when we think we are going crazy.  In grief, feeling crazy is the norm.
Ultimately, our task of survival is to go on about our lives in the full knowledge that we are scarred, visibly and invisibly.  We are mortal, and we do not control our fate.  And with it all, we are infinitely grateful to be alive.  The capacity to grieve our loses is essential to our recovery and to our humanity.  Although that grief feels like hell, it is the heart of limbo and the beginning of our dance."

This book interviews several cancer survivors about their feelings and one gentleman talked about feeling good and strong 27 days out of the month and the other 3 days he felt like death was on his doorstep.  I get this so well.  For the most part I feel good about the fact that I am cancer free NOW and that is all I can really hope for.  But it's those nagging thoughts that creep in and change my focus.

It is awful to feel guilt for surviving and grief for what I have lost.  But everyone has lost something in their lives.  One thing I have learned from this book is that I must, MUST, give myself the time to grieve what has happened.  I have to feel and let it be.  Only then can I start letting it go.

More from "Dancing in Limbo"

"The part that’s really hard to communicate to someone who isn’t a cancer survivor is that on a day-to-day, moment-to-moment basis, you live with the fact that there may be [cancer] cells running around, and the time bomb notion that there may be some cells on the loose; and if it’s not conscious, it’s sub-conscious, but it’s there.  It’s there all the time.”

Even though I am lucky, I have still lost……..”That is the painful truth of survival: luck and loss are intertwined.”

I am going thru what’s called survivor grief.

Dancing in Limbo

I am reading a new book entitled, "Dancing in Limbo".  I knew this was how I was feeling but didn't know how to put it into words.  Here is an excerpt that will allow me to explain the way I feel now after having gone through cancer for the second time.  (I also felt this was the first time.)

"Lost in Limbo - During treatment, our focus is narrow and clear:  obliterate the cancer.  When the job is done, we lose our focus.  Suddenly, cancer no longer defines us - restructuring our time, consuming our energy - and we are at loose ends.  At the same time, all the people who have cared for us go about their business, leaving us to do ours.  We are alone.
As we resume our daily lives, we feel disoriented.  Something is amiss, but we don't know what it is.  Most of us have no enery; some of us are irritable and depressed.  Fears of a recurrence start creeping into our thoughts.  Simultaneously, real life with all its mundane urgency demands our attention.  We are overwhelmed by the smallest things.
......for months I did not want to wake up.  Whatever the day might bring, I did not feel up to it.  I remember wanting to rip the phone from the wall.  Everytime it rang, I felt assaulted.  Someone was wanting something more from me, and I had nothing left to give.
In addition to our disorientation and depression, we begin to experience more anxiety.  Our moods may vacillate between confusion and fear.  Fear of recurrence begin to dominate our thoughts, and we may sometimes feel obsessed with death.  These are the fears we have to hold in check.  Now that we are stronger, they can emerge.
Just when we expected to feel relieved, we don't.   The irony is painful:  we thought that this would be the easy part!  We may assume our feelings are the aftermath of treatment, and in a way we're right, but they have a deeper source.  The reversal of expected feeling states is the hallmark of survivor grief, as yet unrecognized by us.  For the moment, we are lost in limbo.  And we're lost, in large measure, because our defenses are still  in force, keeping us removed from our inner life of thoughts and feelings. 
Survivor's grief is a paradox.  It seems wrong to grieve when we got what we most wanted - another chance at life."

Only makes sense to those who have faced death.  I am a mess.

The New Normal

I listened to a lady yesterday as she told me of her experience with breast cancer and going through chemo.  She asked me when I was going to start chemo and I told her I decided against it this time.  I think she thought I had lost my mind.
I read through breast cancer forums and sometimes post.  I posted that I had decided against chemo this time and received lots of feedback about that being a bad decision.  Who really knows if it is a bad decision or not? 
I read today that post-menopausal women who drink more than 3 alcoholic drinks a week, and are overweight have a 34% higher rate of recurrence.  Oh well.......that seems to be me.  And it came back.  Hmmmmm......something to this?
Since I have refused all additional treatment other than surgery I sit and wait.  My new normal is to wait for "IT" to come back.  I have to say the first time I had cancer I did the same.  And slowly the cancer faded from my mind every minute to only sometimes.  I hope that is what happens this time also.
I told my mom that I am pretty sure that the beast will be what kills me.  I'm not trying to be maudlin....just realistic.  And it's OK because we all have to die of something.  But then I could get hit by the infamous bus tomorrow too.