Et al.

Whiplash

Which is what you get if you ride this damned cancer-rollercoaster long enough. Emotional whiplash: from the tearful getting ready to say goodbye (as if such a thing were possible) over and over again, then finding some small hope that cannot be extinguished. Intellectual whiplash, from thinking you know where this is going, and then being wrong. Professional whiplash, from being snatched in and out of your classrooms, your career, your own thoughts.

We've been through only one round of the modified chemotherapy our newly-promoted cancer doctor recommended for Mr. D., and it seemed to have stunningly positive effects: a near-immediate, visible and palpable reduction in the tumors that had recently become so alarming. That and a liver intervention seem to have slowed the jaundice and liver failure; perhaps even reversed them a tiny bit. Mr. D is more awake and animated than he has been in the past 2-3 weeks, during which he had sunk into a kind of semi-conscious haze. These are all good things.

Balanced against that (and dooooowwwwnnn we go) is the unbelievable toll of the treatments, the sickness, the incessant drugs routines, the lack of nutrition--these are frequently the final culprits in cancer, and we are forced to see why. Several weeks of semi-consciousness means very, very little nutrition. A body devastated by chemo means lowered blood counts that preclude more treatments. A weakened immune system means opportunistic infections and a severe case of shingles. For every time he pulls himself back "up" (a point that is, of course, relatively lower every time), another aspect of his body seems to give way. There's a sense that we are shoving a few feeble sandbags in the face of the oncoming flood, or rearranging the deck chairs on a sinking ship. Every dose lovingly administered is a tiny bit of torture for both of us: is the discomfort worth it? Will it do any good? But what would we do, if not keep trying?

These last weeks have brought me up against the cruelties of dying. Which is worse: to have the one you love slip away mentally, so that at last he is just a breathing body on a bed whose release (and yours) you pray for? Or to have him alert and aware, resisting to the final moments the unseemly destruction of a body that is so young and--despite the ravages of the disease--so healthy? We "joke" that if we disregard the cancer, he's in perfect health. But it's not so funny now, when every step reminds him how frail he is, and how far down we have come. Scenario A seems easier--the slow decline and then release, the comfort that "there's nothing more we can do," the knowledge that "he's not suffering." But that scenario also means that I go through the worst event of my life--and I cannot but pray that there will be none worse--without my other half. Scenario B means we go down together, fighting and crying and clawing for more time, but aware at least of the other's presence. In the end, of course, we won't be allowed to make the choice. It will happen to us. The choices in dying are pretty severely limited.

What we have had the chance to do in these past weeks is realize how amazingly happy we have been together, despite everything: how much we have laughed, how close we have become, how beloved each of us feels in this marriage, and what a joyful surprise our lives together have been. We were married for only one year before the diagnosis, and the two years since have been devastatingly difficult and yet the best we have ever known. To find happiness like this and then to lose it is unbearably sad, and frightening. I'm smart enough to know that I will probably survive this, and that I will find reasons for joy in the life to come, but I realize every day that I will hever again experience the base-line comfort and happiness that I have in my marriage.

What my husband is going through is infinitely more tragic and terrible, but for me this feels like a loss of optimism and hope, a fall from the belief that a happy life (in some ongoing, sustainable sense that underlies the daily tempests) was possible into a world where I know that it is not, and yet must find the courage to get out of bed anyway. Hope will be the final victim here.

posted by Unknown @ 9:44 AM 15 Comments

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.

posted by Unknown @ 10:32 AM 14 Comments