Wednesday, October 5, 2005

Limbo

First of all, thanks to those of you who have sent emails and posted kind words. This "virtual" community feels pretty darned real to me.

The roller-coaster continues. After being told we were hospice-bound a week ago, we have found my husband's secondary oncologist more aggressive, and have undertaken two life-extending treatments: low-dose chemotherapy and a stent to help relieve the jaundice and slow or avert liver failure. Going from a "death sentence" to a new round of exhausting medical appointments is its own particular curse. We spent several days howling in grief and fear, only to have to drag ourselves back into the world of the marginally functional. And since we are now mostly (but not entirely) outside our health care plan, we no longer have the primary oncologist and his staff to oversee and coordinate care. So we are going from last ditch effort to last ditch effort, my husband doesn't look nearly so close to the grave as his condition suggests that he ought, and we are rallying ourselves for whatever time is left.

We're not kidding ourselves. Even if this chemotherapy "works" (a long shot, given the type of cancer and its tremendous spread), no one is talking cure. The bitter grief and painful times are still just outside the door, and for the first time, my husband is having to choose, daily, whether to continue treatment that will prolong his time, even when much of that time is painful and miserable. As he said today, "For the first time, it actually is a choice." Before this, the aggressive pursuit of treatment was a given; he could take it, and we wanted more sweet time together. Now he must confront the reality that prolonging life may mean prolonging misery, with the outcome still inevitable and sad. I don't suppose anyone who is basically healthy can understand that agonizing choice, only respect it. And we will, and do.

If nothing else, the treatment merry-go-round means that we are in a place of "doing," instead of that place of being or accepting that hospice offers. And we are staying in touch with hospice, even as we allow ourselves (at least I do), brief occasional moments of wild hope--like tentatively touching my tongue to the ice, then pulling away before I can tell if the sensation is heat or cold, pain or pleasure.

I know that in retrospect, survivors are grateful for the slow easing away that hospice can provide; glad that they didn't abandon their patient to the studied impersonality of the hospital room, grateful for those moments of quiet hand-holding amid the medical turmoil that accompanies changes in states of being. But the anticipation of loss is unbearable, the opening up of an abyss of sorrow and terror. I have had to remind myself that suffering now is not preventative; this future loss will be no easier for the grief we are feeling today.

In the last week I have had to confront my own loneliness. I was lonely my entire life until I met my husband, and we have been all but inseparable since we met nine years ago last month. Before I met him, my entire life had been a search for some kind of completion, a soul mate--someone to fill my emotional gaps and make me a whole person in the world. I think he felt that way too. Together we are more, individually and as a unit, than we could have been alone. No matter what happens, I hope I can keep that strength alive. My husband has helped me learn to expect the best from people, to ask for help, to feel sorrow instead of masking it as anger. He makes it possible for me to take on the unconditional and devastating love that motherhood requires. I cannot imagine going back to the woman I was before I met him--lonely, fearful, suspicious, and in eternal waiting for a better self. Should it come to that, I want to hang on to the better person I am with him, for him, and because of him.

Mindspin left this beautiful fragment from Raymond Carver in my comments. It continues to bring me peace, acceptance, and strength:

And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.

18 Comments:

At 2:21 PM , Blogger Phantom Scribbler said...

Oh, Dorcasina. I've been lurking for awhile (came from Badger's place). My life before I met my husband was also one of extraordinary loneliness, and my worst fear is that I will someday return to that state.

If there is anything we in blogland can do to stand with you as you confront that loneliness, we will.

 
At 2:31 PM , Blogger Yankee T said...

Dorcasina, I can feel the fear in your words. You are so wise to realize that agonizing now will not lessen the later agony. Do try to get through these days as happily as possible, and know that there are so many people-probably many more than speak up-who are reading you and holding you and your little girl in our hearts. You are helping to teach us all to view each day as a gift.
I'm so sorry.

 
At 2:49 PM , Blogger jo(e) said...

How very difficult. But you do know that this strength you have now -- that is the strong person you have become. There is no going backwards. Do not underestimate your own resilience, your own wholeness.

 
At 7:54 PM , Blogger bitchphd said...

I'm so sorry. Jo(e) is right: there is no going backwards, which is both the tragedy and the blessing. Hang in there. Take good care. You are doing what you can.

Read poetry when you have a chance. Maybe Fern Hill will help.

 
At 11:27 PM , Blogger Demetri said...

Just thinking of you both and hoping.

 
At 3:00 AM , Blogger ABDmom said...

Dorcasina, I'm so sorry. I feel much the same about the effect my husband has had on me, as a person, as well as the course of my life. And I worry about what would happen if I lost him, if I would turn back into the same scared, lonely, lost person I was before.

But as others here have said, there is no going back to who you were before. There are too many life experiences, too many new roles (such as being a mom). You're not who you were before, and you never will be again. You can only move forward, and we will be with you as you do so.

Take care.

 
At 6:42 AM , Anonymous leslie said...

It sounds like another miserable place to be - that mix of hope and fear and invevitability is so very hard.

I don't know if you've looked at clinical trials for any experimental drugs - depending on where you are and what kind of access you've got to academic oncology departments you may be able to find a useful trial - search at http://www.clinicaltrials.gov/
I apologize if this is something you've already explored and found nothing. Many of these trials won't help - it didn't ultimately help us last spring when my mother was dying but sometimes it can buy you some good time.

It's such a hard tightrope to walk - the continuing treatment until it's time to stop - you have my heartfelt sympathy

 
At 2:13 PM , Anonymous Anonymous said...

From your post, I can glimpse how much you and your husband have together and the enormity of what you face now. I can only imagine that there is - all at once - immense love and gratitude, fear and pain. Every small good moment you can celebrate together marks a victory of the spirit and of love over suffering. Have what you can have while there is time. At least that is what I wish intensely for you both.

You won't be alone again. There's community here. It's not the same thing, but it's still real.

 
At 4:18 PM , Anonymous ehj2 said...

just another tired old man in a tattered jacket with nothing but dust in his pockets who joins this circle of community around the warmth of a fire at the edge of night.

we break bread together and eat silently.

what is a circle but a line drawn into itself. what is a community but a people in a shared vigil.

the cosmos turns. the stars move.

there is nothing i can offer in the soft firelight but my own presence, my own empathy, my own complete emptiness.

and yet we are all cocreators of a lighted world beyond our waking dreams.

/e

 
At 1:36 PM , Anonymous mindspin said...

If I were in your place, I think it might do me some small good to know that people were thinking of me, day in and day out, even as I approached the edge of the known world, so I just want to tell you that I am thinking of you, your husband and your daughter daily, whether or not there's a new post and despite whatever is going on in my corner of the world. I am certain that others are, too, and that all of us just hope that you'll let your blog audience be whatever good we can be.

 
At 2:38 PM , Blogger Yankee T said...

I second that. Just stopping by to say you and your daughter are on my mind, every day.

 
At 8:35 AM , Blogger St Louis Cardinals BUFF said...

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At 8:03 AM , Blogger Lonely Londoner said...

I haven't the words. But I think of you daily and I hope the best for you. I am so very sorry.

 
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At 9:06 PM , Anonymous Philoillogica said...

Dorcasina, I just wanted to let you know I'm thinking about you and your family every day. I'm still here, still listening.

I'm an Early Modernist by training, so my instincts don't recall Auden, but John Donne:


A Valediction: Forbidding Mourning

As virtuous men pass mildly away,
And whisper to their souls, to go,
Whilst some of their sad friends do say,
"The breath goes now," and some say, "No:"

So let us melt, and make no noise,
No tear-floods, nor sigh-tempests move;
'Twere profanation of our joys
To tell the laity our love.

Moving of th' earth brings harms and fears;
Men reckon what it did, and meant;
But trepidation of the spheres,
Though greater far, is innocent.

Dull sublunary lovers' love
(Whose soul is sense) cannot admit
Absence, because it doth remove
Those things which elemented it.

But we by a love so much refin'd,
That ourselves know not what it is,
Inter-assured of the mind,
Care less, eyes, lips, and hands to miss.

Our two souls therefore, which are one,
Though I must go, endure not yet
A breach, but an expansion,
Like gold to airy thinness beat.

If they be two, they are two so
As stiff twin compasses are two;
Thy soul, the fix'd foot, makes no show
To move, but doth, if the' other do.

And though it in the centre sit,
Yet when the other far doth roam,
It leans, and hearkens after it,
And grows erect, as that comes home.

Such wilt thou be to me, who must
Like th' other foot, obliquely run;
Thy firmness makes my circle just,
And makes me end, where I begun.

 
At 12:03 PM , Blogger timna said...

just hoping that your silence reflects filling your time with your love. take care.

 
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At 11:07 AM , Blogger Supa Dupa Fresh said...

Hi Dorcasina,
I don't know if you check here any more, but wanted to know I referred to you directly in a post last night, Hospice Horror Stories.
Thanks for writing it down, hope you are well.
X
Supa

 

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