We'll be ready, nails done

While I was sitting out on the tailgate of her husband's truck, my sister in her smoking spot -- her walker pushed to the sidewalk and turned around so that she can sit on the little cushioned seat provided for this purpose, all while lighting up outside the limits of the property on which smoking is verboten -- I was momentarily dazzled by her sparkly ring finger.  It was hard not to be, since it was a gorgeous sunny morning and since her ring finger, with its engagement and two wedding bands, is pretty loaded with diamonds.  

I wish I'd taken a picture of her ring finger, actually, of her hands altogether.  It's the little things like that that I know I'll want to remember.  The big strokes I will never forget.  It's the details that I'm already mourning, even now, as they start to slip.

Sitting there, her rings flashing in the sun, wreathed by her own smoke, my sister told me that she doesn't think she'll last until Christmas.

My sister is on no drugs at all right now for the cancer.  During a recent visit to the ER for a seizure they thought might be a stroke, the doctors made the determination that the latest chemo cocktail was harming her more than helping.  One of her white blood cell counts had dropped to the feared AIDS threshold, so off she came.  As a result, the only thing my sister is taking now is the usual pile of HIV pills, Ativan for anxiety and pain meds for the headaches which, when they show up without warning, are excruciating.  As of Friday, she's in hospice care which means, as far as I can make out, that the medical team have made the call that the time for curative care is over.  It's palliative care now, keeping Carla comfortable.  For as long as it takes.  Until Christmas or beyond.

It's a mercy, I suppose.  Off the chemo, Carla seems steadier than a month ago.  But still, she talked about how scared she is, how easily depressed.  The doctors don't have definitive answers about anything -- least of which about The Big Question: how much longer?

Can you imagine if that were you, sitting smoking just past the end of your driveway, knowing the end was coming in just a matter of time?  Leave aside the cigarette if you need to, but for a moment, turn your walker around and stare that fact in the face.  How would you feel?

We sat out there together while my sister smoked and talked, and I was struck by how normal our conversation felt.  Except for the subject matter, we were just two sisters, hanging out in the street on a beautiful late winter morning, talking.  It might actually have been the most -- the only? -- normal adult interaction we've ever had, unfettered by the old sibling baggage, unsullied by a lifetime of resentment and oneupmanship.  I kept my eye on her flashing finger and on the fact that I have this time with her at all.  No regrets (ok, small regrets) about the past and some nerves about the future, but relishing the sparkly moment in the sun.  Together.

As it turns out, it could be a while.  Although I had a freak-out last week about hospice, about what it might mean for my sister's mortality, hers is a slow-growing cancer.  The doctors, who appear to be learning as they go, theorize that the cancer took three years to cause the hydrocephalus that landed my sister in the ICU three years ago. And she's been in treatment for the three years since then.  All told that cancer is probably 6 years old.  It's not like the end of chemo will mean a sudden burst in growth for the cancer.  It may just keep creeping along, extending its nasty little tendrils deeper and deeper, wrapping tighter and tighter around her poor brain.  It could be a while, and it could be awful.

Once she'd smoked her Malboro Light to the filter and soaked in enough of outside, my sister got herself up, rolled over and sealed her cigarette butt inside the ziplock bag they keep in the truckbed for that purpose.  I opened the gate and stayed close as she made her way to the back door of their apartment where lunch and a nap were queued up next

All its sparkle aside, the square-cut diamond in Carla's engagement ring is long gone, sold a long time ago, she said. The two wedding bands -- I'd be remiss if I didn't point out that one is really a one-year band, something I just learned from Carla on Saturday (of course she knows these things and I do not) -- still have their diamonds.  Their life together sure has not been an easy one for my sister and her husband.  Diamonds have come, some diamonds have gone.  But even so, the hands sparkle just the same.  

I'll see Carla again this coming weekend when I take her to her neighborhood place, Pinkie's, for a mani-pedi.  It seems like just the right kind of pampering girly fun --  a little outing, a little massage, a little color -- just the thing to make hands prettier,  a more fitting vehicle for all those rings.  When she's sitting out on her walker in the sun, I hope it'll be something that makes her look down at her own self and be glad, even just for a moment.  

I'm hanging on to every interaction, driving, going, baking, texting, waiting -- trying to make the most of every opportunity that's offered, to give some comfort or only some change-of-pace entertainment, to be present, to be helpful.  I'm keenly aware that I've only recently been allowed access, and so trying not to fuck it up, bringing the tall decaf peppermint mocha with extra whip and no sprinkles from Starbucks, even though I think it's stupid to spend $3.75 on a coffee drink.  So what?  Who cares about stupid?  This is life and death, for reals.  This is the end, coming slowly, but coming just the same.

So let it come and we'll be waiting on the sidewalk, nails pretty and rings flashing. We'll be ready.

The final word on the PET scan?

I got the call this morning that I've been bracing for. Unfortunately, every time Joe calls me lately, I am instantly in a panic, wondering if this is The Call -- the call that contains the final information on the PET scan, which is really the final word on his lymphoma (oh jesus, please let there not be something else, not more chemo and suffering and pain). It's a drag because instead of feeling my usual total joy at hearing my sweetheart's voice, there's also this spike of nausea and anxiety.

But I think I can be done with that for a while.

The ENT doctor (Dr. Chien, love his name) called to say that he had indeed spoken with the radiologist about Joe's last PET scan. For those readers just joining the saga, we needed to make sure that the little Something on Joe's right tonsil wasn't some residual uber-lymphoma, power cancer, that survived the chemo scorched earth treatment.

The radiologist said that the Something was nothing to worry about. In a regular person, one who hadn't had lymphoma, he wouldn't even mention something like this when reviewing the results of a PET scan. In a normal person, not even worth mentioning. It's nothing to worry about, he said.

So Joe's not having his tonsils out, and we're trying to get comfortable. We both wanted news that would make us jump around and shout and laugh and cry and schedule a big party, but I think we're still a little stunned - not feeling exactly elated, not feeling exactly devastated, either. Perhaps just another aspect of our shared Post Cancer Stress Disorder which I assure you is very real and present in us both.

But really, even though we're stunned and not sure what or how to feel, I know that it really and truly IS good news. Once cancer has invaded your life, it's hard to feel safe, get comfortable. But I know this is good news. I just can't quite exhale yet, even though I know it's coming.

We will have a party. We will jump around and shout and laugh and cry. It might just take a little while.

BIG LOVE TO ALL.

Cycle 6, Day 5: The Cure for What Ails Him

It's a gray day and Joe's been feeling pretty crappy. We went for a leisurely amble with Jasper this morning on the levies near McInnis Golf Course. So glad we had down jackets on and gloves -- brrrr! After a few hours of napping and feeling generally miserable, Joe is now back on his feet and outside, doing something he loves: screening finished compost.

This is always a gratifying experience, checking out the worms, smelling the freshness of the dirt, appreciating that all that glorious soil amendment is the product of a natural process of decomposition for which we simply manage the conditions. Right now, it's even nicer for Joe, a great way to balance out the residual effects of super-toxic chemo and settle the mood swings of the prednisone.

There's real solace in the compost, too, actually. It's pretty hard not to be optimistic, not to be excited about the future, not to feel hopeful, when you're elbows-deep in fragrant new soil, dreaming of next spring and summer, what will we grow, what will we eat. Even in the darkest and coldest part of winter, the compost reminds us of what is coming, letting us feed the ground now so that it may feed us later. A little hit of summer sweetness even on this gray day.

This is delightful every year, but especially heartening right now, such an essential part of Joe's own springtime return. :)

Cycle 6, Day 3: The bounty of friendship, another gift of yoga

After walking with Jasper at the levies this morning (big tide rushing in, harriers trolling for their breakies), I sat with Joe by the French doors in our room for a while and watched the busy-ness of birds outside. Joe had a bit of a rough night, feeling very weak today and funky, but nevertheless left for work around 8:30, which is late for him. Not sure how long he'll last there today, honestly. Even though it's the last time, it might be the worst time, his poor body weakened by all of the chemo and side-effects that came before. Hanging in there...

I continue to be amazed at the kindness and love of the beautiful people we are so graced to call friends. Last night, darling sisters Alexandra and Gillian brought us an enormous pot of delicious chicken soup tied with a red bow, warm, delicious garlic bread, fresh and delicious zucchini bread. And a handmade sweet card. We were all delighted and dazzled by their presence, so moved by their generosity and unbelievable cuteness.

Besides the sheer delight of their presence, just how lit-up they each are, what's so awesome about it, for me, is that I only met these two lovelies in April of last year, when we had the good fortune to meet and spend a week together at Laura's retreat in Careyes, Mexico. For me, it was love at first sight, in that way I've grown to expect through yoga, that the people I meet through the practice become my fast- and heart-friends. I would do anything for them and know they would do anything for me. It's as if we've always known each other, because we see and know the truest thing about each other from the very beginning. Until last night, Alexandra and Gillian had never even met Joe, but still they came, bringing all that love for us to eat.

I never expected this, to meet such wonderful people through Anusara, to rest back into the arms of such a warm and loving community of yogis and yoginis, to be so very loved and to love so very deeply, so very madly, all these new friends all the time, every day.

The gifts of yoga are so much more than flexibility, handstands, peace of mind -- all of that is wonderful, but what is the real gift, the biggest joy, is this super-connectivity to others. I am so grateful to our teacher, Laura, who creates the conditions in which these friendships burgeon and flourish, Laura who consistently inspires each of us to see the good, the light, the beauty all around us. Through these glorious friendships, I touch the One-ness of which we truly are a part. Thanks to these lovely friends, I am reminded every day, on the mat and off, that Love is all that matters, the one and only real purpose of our time here on this earth.

XX

Cycle 4, Day 14: Gray Area

Behind today's door on the "Advent to Freedom" calendar that Nancy made for Joe, is a small cartoon of Keith Richards and the words, "ROCK IT!" We are doing our utmost to do just that, rock it, rock this whole cancer bullshit.

Today Joe finally heard from his oncologist about the results of the PET-scan. [I, of course, regret not having been on the call since my insatiable urge to take notes has therefore gone unmet.] Overall, the results are positive. The doctor was pleased.

But there is still Something on Joe's right tonsil. Those who've been following all of the gory details may remember that the first PET-scan, before Joe started chemo, showed spots beyond the big tumor in Joe's abdomen, one of which was on the right tonsil. That stubborn little bastard is apparently still hanging on.

Some good news: Joe will only have 6 rounds of chemo. Had the results of this PET-scan not been this positive, there was a chance of extending to 8 rounds. Joe was really clear that he would cry for two days straight if he wasn't done after 6. So that's some consolation.

And we're hanging on to how positive Dr. Maloney was on the phone to Joe.

But there's that Something.

After the chemo is finished, Joe will see an ENT to explore what's going on. The doctor today mentioned a biopsy.

So it's pretty gray, this zone we're in right now. Not 100% positive, and sure not 100% negative. But gray. And a little scary.

Last time Joe had chemo, the lovely nurse Susan told us how some people really only realize the full horror of what's happening to them when the chemo is over, and then they have something akin to post-traumatic stress disorder. When they aren't preoccupied with the poisoning of chemo, with the side effects and getting through them, then they have to deal with the emotional side of it.

With this news today, I do feel like we're in a different stage, one we didn't fully anticipate. I think we were really expecting 100% good news from the PET-scan. I didn't budget enough reserves for the fear that this latest sorta-news would unleash for me, for the scariness of this gray area.

We're still rocking it (thanks, Nancy, for the daily inspiration and reminders of your love), but god damn, we'll be so glad when this is over with.