Hello, all -
This is easily the strangest missive I've ever tried to compose, and for some of you its mere arrival in your inbox may open a small window of surreality in your day. I hope you'll forgive me if it comes to you out of the clear blue and if it presumes on an intimacy or sense of connection that may on your side be tenuous or nonexistent. I hope not to blight your spirits, even if my news is superficially grim.
There's the preamble, the drum roll. If you do know me well, you know my great weakness for self-dramatization. You know that, when I am given sanction to imagine myself a charismatic player in some grand (or pretty please at least moderately absorbing) plot, I am utterly in my element, a very happy fishie.
To the point, little minnow.
Most of you receiving this already know that I lost my mom to inflammatory breast cancer when she was only forty-eight, also that last December (at age forty-four) I received a diagnosis of my own for a somewhat less terrifying but also unusually aggressive ("triple-negative") subtype of the same disease (not really the most accurate term, but let that pass for now). The discovery a few weeks later that I carried a BRCA1 mutation was shocking without being surprising, and it helped to guide my subsequent treatment. I had a double-mastectomy in January, followed by five months of chemo, the first eight weeks of which involved a cocktail and regimen that kicked me in the teeth and left me briefly miserable. I emphasize the misery with the brevity to highlight the terms of my attempted bargain and my eagerness to embrace them: a few truly crappy weeks to buy a chance at a longish life. Excellent terms, even with the many provisos in the small print. I completed treatment at the end of June, had my ovaries out in August (to mitigate the risk of a second cancer), and spent the last two weeks of September celebrating with my husband, Peter, on the big island of Hawaii. We had a wonder-filled time, even if the cabinetry at every place we stayed was unaccountably hostile. I was continually attacked from the left by shelves and doors that I knew had been shut an instant before.
We returned home September 30th, and I prepared after nine self-fatted months joyfully to turn some of my energy and intelligence outward again. Classes would resume at Bridgetown Dog Training on October 11th, and whatever nervousness I felt about the lingering numbness in my feet and dullness in my mind had an easy answer: puppies!
Alas, the furry reunion was not to be. A week to the day after we returned from Hawaii, a double slice of my vision fell completely away. I was due to see my OB-GYN for a post-surgical follow-up, but I asked Pete to detour to the emergency room. A CAT scan revealed a sizable mass (roughly 1-inch in diameter) toward the back of the right side of my brain, behind the optical chiasm, in the border country between the occcipital and parietal lobes. It was presumed and later proved to be a metastasis of the original malignancy. Thus the day marked for my return to work found me recovering instead from the successful excision of this little lemon from a wobbly jello mold (my surgeon's vivid analogy).
All went as well as it possibly could, and all the remaining news was good: a clear post-operative MRI, and no perceptible metastases anywhere south of the blood-brain barrier. (The chemo actually did its job remarkably well.) And yet. And yet. My straw is but a stub. On Wednesday, Peter and I met with my lovely and unflinching oncologist, and she helped us push off as gently as possible into uncharted but at this moment beautifully tranquil waters.
Here's the deal. A triple-negative growth like mine has an extremely poor prognosis once it has taken up residence in the central nervous system. If you've followed my story so far (blogging about it, natch), you'll have read my approving reference to Stephen Jay Gould's "The Median is not the Message," so I should probably be more sympathetic to the doctors who have urged me to chase a vanishingly small chance at "progression-free survival." But the costs of that chase so clearly outweigh the phantom benefits that I cannot feel tempted. I'll soon undergo four weeks' worth of full-brain radiation, but only in the interests of protecting the quality of the life remaining to me. That will mark - by my choice - the end of my cancer treatment, and all further medical intervention (minimal, I hope) will be oriented toward saving me and everyone in my immediate vicinity from any/all avoidable distress. No further surgery, no further chemo, no further scans.
I hope you'll understand, for all our sakes. If we stand any hope of introducing some sanity into American health care and making it more widely (oh, come on, can we not fucking say universally?) available, those of us who are able need to exercise our right, our responsibility to say "No. Enough. Thank you for every amazing thing you've already done." Any of you who has been first or secondhand through a "cancer journey" knows that it takes a village of dedicated people continually exceeding their professional mandates just to get us from A to B. Could we try protecting them a little from their own passionate commitment, not ask so often for G or Z?
Principled compassion aside (how does that sentence end?), I simply cannot bring myself to spit in the face of my unbelievable good fortune.
I don't use that phrase grudgingly or in the way of someone trying to put the best possible face on a bad situation. I use it with my whole heart, my whole head (or what's left of it. My sweetheart serenades me now with Buck Owens: "My bucket's got a hole in it. My bucket's got a hole in it. My bucket's got a hole in it, and I can't get no beer." He's pretty great, Pete.) And you should need very little help in seeing how absurdly fortunate I am. At this gloriously precarious moment, I am full of health, full of life. I lack for nothing. Truly. I have been delivered almost whole into the most delicious of fantasies: the secret land of Now, where the whangdoodles roam free. Three days ago, my oncologist gave me ("we are always wrong, but...") the proverbial six months, along with a referral to palliative care.
Many of you reading this are artists of one stripe or spot or another, and you may be the quickest to believe that I am in a kind of rolling ecstasy over my situation. In fact, if you're in any doubt about your essential identity, this will make an excellent test: Do you envy me? You don't need to answer aloud. You can decide for yourself whether and when to reveal what a weirdo you are. But you'll know you're not alone. I have been preparing for just such a stage turn all my life, never daring more than a sideways hope that it'd fall like a Keatsian peach (a little overripe) into my lap. To be fully alive and to know it and still to have voice to sing. (The only truly annoying thing is that I've now got Phil Collins stuck in my head. But not to worry - Richard Thompson supplies excellent curative and preventive therapy for earworms.)
I don't know whether I'll teeter here for another minute or another year, but after long, careful deliberation... Ha. Here's what I'm saying. My days of care are over. A very different thing from saying that my days of trouble or worry or pain are over, but right NOW I find my predicament utterly delicious. And NOW too. Even better because I have managed almost to complete this particularly urgent (to me) task. I got so lucky (again!) that my first metastasis (others are coming) arrived where it did and not in my frontal lobes, motor cortex, brain stem... name it and its loss could have damaged or completely knocked out a capacity I hold much more dear than the ability to see my neurosurgeon's fingers waggling to the west (or dodge belligerent chrysanthemums: simple walks have become mighty adventures). New damage, new deficits will arrive in time, but for now... for now... So many nows in a day.
Most of you reading this will need no explanation for why I've included you among its recipients. If you are puzzled, my justification is simple but at this loaded moment irresistibly compelling: whether you have ever known it, you have touched my life in a way that has enlarged its scope and heightened its many pleasures. You might have met me only recently and come to know me only a little, or my strange name might trigger the far-off memory of a bright little tomboy with lots of good intentions and no self-discipline whatever. Gretchen "full of potential" Icenogle. If I realize any of my promise, you are partly to credit or blame. You may not remember me, but you have mattered to me, and I want you to know it.
If you have received this secondhand, please don't take offense or wonder why you didn't rate a spot on the first mailing. "My bucket's got a hole in it..." I'm freely delegating and/or walking away from a host of responsibilities, and the first favor I have to ask here is that you share this with anyone you think might care, since there's a real possibility I've failed to tell that person myself. If you've received this secondhand and you have reason to believe that the omission was deliberate, I ask your forgiveness, too. I am not operating from bitterness but from a pragmatism that is frankly ruthless. Last night I saw my favorite actor perform in a splendid production of Stephen Spotswood's obscenely juicy take on Red Riding Hood, In the Forest She Grew Fangs. I'm stating a plain fact when I say that I have a bit of a glow about me at the moment, the glow of nothing to prove, nothing to lose. I've never kept company with "alluring," so it's fun to get a late taste, but it's also problematic. When an acquaintance I've only ever been able to enjoy from a distance approached to ask when we could do lunch, I demurred, and when she pressed I told her, "I just don't have time. Almost literally. I don't have time." (She's a weirdo like me and will make a good story of this.)
This is the second favor I have to ask, and I ask it for your sake as much as for my own: Please don't venture near unless explicitly invited. I am an extremely hungry and intermittently terrified animal in these days, and I will make every effort I can not to be cruel, but I am nothing polite. I am fiercely intent above all on protecting those on whom I am leaning very hard. They have almost my full weight already, and I need them strong.
I need you strong. If you're wondering whether there's something you can do (as opposed to all the things I might tell you I really would rather you didn't), it's this: take whatever sudden flush of energy might fill you when a toothy creature grabs you by your tender throat, and let it hurl you past doubt further into the work you're already doing or know you need to do. Whatever that is. Maybe chasing down the email address of your ninth-grade English teacher (Hello, Mr. Hendershot! Thank you for believing that I was ready at thirteen for As I Lay Dying and for thereby helping to teach me how much I love being in over my head. I hope this finds you well and still channeling the mighty spirit of Zorba!), or that of the woman who wrote the most fiercely beautiful play you have ever been privileged to see totter to its bloody feet onstage (Hello, Eliza A! God, but I hope you are writing!!).
Do you begin to see the possibilities here, the fun I am having and hope to have yet?
The other thing you can do you have already done. You've listened.
I would love to hear back from you in any written form. I just can't promise to reply. Snail mail would be so scrumptious! But please send nothing more or other than paper - you'll only give my dear husband another little heartache around the terrible subject of waste.
Yeah, sweet Pete's still hoping it's all a bluff. I'm gonna be pretty red-faced in a year, lamenting another hour wasted on Pinterest. I'll take my chances.
A thousand thousand thanks. I favor the familial Italian expression for love: Ti voglio bene. I wish you well.
Update: At the strong and timely urging of my father's cousin Sarah, I looked more closely at the relationship between the hypothetical benefits of radiation in a case like mine and the all-too-certain damage. I'm feeling way too protective of my lingering wits to subject them to any unnecessary abuse. I cancelled today's appointment with the radiation oncologist and will be talking instead with the folks in palliative care - then going for a long ramble. I have an irresistible itch to wander, to cover as much ground as my sorry status as a two-legged creature will allow.