I’m soaking in it

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Of all the cancer treatments I’ve been on, my least favorite was Affinitor. Why? Because they told me not to take baths! (It makes the skin on your feet peel off.) They also told me, “not to clap my hands” (?!) but I didn’t give a crap about that rule, because I am not addicted to generating applause.

I am, however, addicted to long, hot baths.

Baths have now replaced all my former vices— and I had plenty, let me tell you. Like any good gateway drug, it now takes more than some cut-rate epsom salts to get me off. (Plus, so much of that store-bought product comes with extra chemicals.) So, half out of necessity, half out of curiosity, I’ve become a bit of a mad scientist. Bathtub gin, bathtub meth— pfft, let’s make some REAL bathtub drugs! Who’s getting in with me?

Kava/Damiana Soak for Magicks and Happy Thoughts

(I order my herbs and muslin bags from Mountain Rose Herbs, they’re organic, and fairly priced.)

I must preface this one by saying I am a bit of a hippie. This bath smells like a gypsy’s medicine cabinet and the water you soak in will be a sludgy brown color. (It won’t stain your skin or tub though.) If you can get past those two hurdles— embrace them, even—in my experience, this bath is pretty doggone rewarding.

Mix 1 cup kava  and 1/2 cup of damiana in a pot and fill with water. Bring up to a boil and then simmer over medium low heat for 20 minutes. Strain the herbs into a muslin bag and tie. Give it a squeeze and toss into the tub along with the “broth” you just made. Light some candles. Get in there, and float away . . . see what comes next.

 

 

The place I live

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This is the place I live. Some mornings, I wake up and for just one delicious second or two, I forget. Then it comes washing back over me and afterwards, all the day long, I drag a heavy backpack full of thoughts about where I am around with me—everywhere I go. As a permanent resident, I have to. There are many things that need to be done in order to ensure my continued stay. Most of them aren’t pleasant, but for me, leaving seems way worse than sticking around.

Some people live here alongside me, just as I do—as permanent residents; some people are just stopping through and everyone else are in this place, but not of it. I don’t know too many locals like myself. Probably busy with their backpacks, like I am. The people who are just visiting can be found everywhere—on the covers of checkout line magazines, especially. (Seems like a large number of them are reality show stars, doesn’t it?) The ones who are visiting just love to tell people about their journey here. They talk a lot about bravery and re-ordered priorities. I know their stay in this place is no fun —however short it may be—but they get to leave and never come back and that is something special. Let me tell you.

Then there’s the rest. They’re here around us visitors and lifers but they’re neither.  They imagine they might understand what it’s like here, because they all know someone who has stopped by or lived or died where I live so they think they know something, but they don’t, really.

The longer I live here, I find these people harder and harder to understand—as if a slow-growing language barrier has developed. Sort of like my neighborhood is showing the first signs of gentrification. There’s all these cool people around and someone opened a rad cheese shop and it’s exciting until the realization comes that the cheese is out of the budget and there’s nothing in common with any of these people around who are wealthy beyond measure in ways I am not. More and more frequently I am finding myself resenting them for their carefree lifestyles and want to scream, “GTFO away from me unless you’d like to pick up this heavy-ass back pack for a while.” Unfortunately, because of that language barrier I mentioned before, what they hear me say is, “Tell me about that interesting show/book/article you watched/read about my town and how an obscure scientist is making huge strides in developing a Nairobian bean paste which when injected daily, might one day in the distant future make this place an abandoned ghost town full of tumbleweeds.” and they smile with relief and shove another hefty item into my bulging backpack so they are hands-free to go about eating the expensive, delicious cheese that is just out of my reach.

I imagine myself sitting on a bench on the dusty road that runs through this place. My permanent residence.  A bus rolls up and belches out a new batch to wander the town. They all disembark with game faces on. Some look tough, resolved. Some laugh, some cry. Who will stay, who will go? Why them and not others? How do I keep my heart and communication lines open? How do I make the most of my life here as permanent resident? How do I let go of this ridiculously heavy backpack? Can I please taste some of that cheese?

 

Hairgiver

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I made it four years without the hair-killing kind of chemo. I’m super lucky and grateful for that. I didn’t know that cold therapy to prevent hair loss was even an option, and actually I’m still not quite sure — but damn, it sure has taught me a bunch.

If you’re here for the short answer: Do Penguin Cold Caps work? Yes, for me they have worked so far. They are also expensive and they cost a lot, too. Haha. See what I did there?

You see, as it turns out, wheeling two coolers full of 80 lbs of dry ice into the clinic isn’t something I can do on my own. Neither can I lift and fit a freshly sub-zero-frozen cap to my head every 30 minutes for NINE STRAIGHT HOURS. (Yes, that’s really how long it takes.) It’s not that I need help, in order to do this cap thing successfully, I need someone to do this for me. Every. Single. Week.

I have a lot of awesome friends. They are all willing and able and happy to take me to lunch, to drive me around, to sit and hold my hand — but these caps are too much. It’s physically exhausting and really, nine hours? People have lives, and families and hobbies and stuff. So these caps have brought me to a scary place: the place of the hired caregiver.

“Caregiver” equals  “I need help.” For me, coming to this realization has been absolutely terrifying. I’m not a person who is used to asking for or needing help. And today I need help for the b.s. vanity which is keeping my hair—but tomorrow I might need help to do very basic things. Ugh. See? Scary. Also scary? The first weirdo who answered my Craigslist ad for a hair helper. (shivers)

NEED MOAR HAIR MEMES PRONTO

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Ok. I feel better now. I did finally find a person to help me. But for my sanity’s sake, I’m not calling her a caregiver.

 

 

Somebody

Know what’s better than being rich and famous? Being a person of “influence.” Having some supposed sway over what other people might do/visit/buy unlocks a cavalcade of objects and experiences unavailable to most humans — even the rich and famous ones. A Bentley Continental to drive around for a week, a 10-day stay in a luxurious villa in Fiji, a meet n’ greet with a grouchy James Lipton . . . just a few of the wonderments that were tossed my way as a magazine editor (back in the day, before print died.)

It’s called “comp life” and if you haven’t experienced it first hand, there’s no comprehending how absolutely seductive and satisfying it is. Also: addictive.

Like any good drug you don’t realize you’re hooked until it is gone. And influence? Recent events reveal I am fresh out.

It hasn’t been easy, making the transition to ‘regular person.’ I can’t lie – I get embarrassed standing in a check-in line at a hotel or waiting around at a restaurant podium. I miss the boxes of free stuff that used to land on my desk each and every day. Once in a while I forget that I am no longer ‘influential’, and I ask for a favor.

Fireboy bought tickets for us to see Father John Misty. His album Fear Fun singlehandedly carried me through 2012. I’ve seen him live a whole bunch of times. Times when I could still dance and move and stand for more than 15 minutes at a stretch. So, Fireboy buys these tickets, not realizing that the venue HAS NO SEATS. Zero seating. That means standing. Everybody up on their feets. The entire show.

So, I do what any card-carrying comp lifer would do. I make a phone call. To a person who knows the owner of the venue. You know, to find out if there’s some ‘accommodation’ that might be made on my behalf. You know, as a friend of friends? A friend of friends who happens to have cancer. Yeah, I did it. I dropped the ‘C’ card.

The response?

There’s a table for 8 that can be had. With bottle service. For 500 bucks.

Ok. Ok. I get it. Sheesh.

 

 

 

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When I recover from yesterday’s chemo, I’m going to compose a lengthy, long overdue post about Penguin Cold Caps and how they (assisted by my vanity) are making my life a living hell. But in the meantime, here is a link to a quick and heart-healing loving kindness meditation from my favorite San Francisco yoga teacher, Caroline Kelley. If you reside in or near the City, check out her workshop schedule or visit her in Bernal.

 

 

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Here is your pep talk!

I have been looking for a pep talk. High and low. Sometimes, it turns out they’re just plain scarce. Who knew? I literally googled “pep talk” today and got nothing. So I took a Xanax. Then I got an email from someone out of the blue who said some things that made a big difference – so I think maybe I will set this pep talk down right here for you in case you need it. I know I do. I’m going to read it 100 times right now myself.

You might think you know what’s going to happen next, but you don’t. No one does. Miracles happen every day. Sometimes they are huge, sometimes they are small. If you are scared, maybe it is because you think something bad might happen. Look around you right now – where are you? Are you safe? Do you see, hear or feel anything beautiful? In this moment, right now – you are okay! Stay right here now with me. And now again. We will make a chain of “right nows” where we are okay. We will do it and we will focus on all the good things that might happen.

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Wha happen?

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oh, here’s me – never mind the surrounding devastation…I’m not sure what happened, exactly. A week in the hospital with a special button you can push when the pain gets too much, tends to wipe away the details.

While I don’t ‘pray’ every day in the traditional sense, I am always asking to be led; to see the signs; to listen for angels. I don’t always manage to stay out of my own way, but sometimes I do. That’s how I ended up letting Brett take me to the hospital. That’s how a doctor (not my own) spotted further growth in my cancer- growth that happened in less than a week- and recommended that the clinical trial I was considering, probably wouldn’t be safe at all considering I’d be off chemo for at least three weeks. And in fact, maybe things had escalated so quickly that it was time, like, right now, to switch to a new, gnarly chemo- the kind I’ve been able to avoid. The kind that murders you after it makes your hair fall out. Like I mentioned, I held the reins to a self-administered IV drug, so I’m sketch on the details but I ended up on the phone with a nice lady named Kitty who told me all about a special hat I can wear to keep my hair during this next round of whatever, but that blog post’s gotta come later because there’s so much more between.

I leave the hospital on oxygen. Somehow it is less mortifying than before. I think it must be those “Fault in our Stars” ads. They made cannula hipster? We get on a plane to San Francisco. Brett is afraid I am going to scare the surrogate, so I wear 8 layers of drapey clothes and leave the O2 machine in the car when we arrive at the clinic. We sit in a darkened room looking up at a 32″ monitor stuck high on a wall. I take tiny, measured sips of air while a male Puerto Rican ultrasound tech mutters under his breath as he runs a gooey probe over Jess’ tummy and through a checklist of toes, aorta and forearms. We are waiting for the part where we find out if it is a boy or a girl. I am hoping for a boy, because somehow I have become convinced that I will die sooner if it’s a girl.

“It’s a little girl you got in there.” says the man. My lip shakes so hard it vibrates. I am glad the room is dark. “She’s so pretty,” Fireboy says, curling and then smoothing the photos.

Tears pour from my eyes and I can’t stop them. I am happy and not happy. I feel the tiniest forces that hold me here. I have never before sensed the boundaries of their fragility – if I stare too long, all connections relax.  Their grip unfurls and the pieces tear away like the thinnest of tissue.

 

 

 

 

When Morphine was just a band that I liked

Last night Fireboy was on the sofa watching Bob’s Burgers and I walked over the corner of the living room where my purse was. My purse was on the carpet by the TV, so I  knelt down to find my bottle of  Zofran (which is an anti-nausea medication) and then I accidentally barfed all over the floor.

Barf, barf, barf. I hear Fireboy get up from his place on the couch. Barf. I stand up and walk over to the kitchen sink, barfing. I listen to him collect his keys and bag. Barf. I’m standing in front of the open plantation shutters and it is power walking rush hour in Mountain Shadows East. I imagine the ladies of the HOA marching along, glancing over to see me retching in to the pretty porcelain farm sink.

I  think I am done, Fireboy walks into the kitchen. “Are you leaving?” “Yeah, I’m going to drop off the um things for the thing at the, you know…”

Sorry I barfed in front of you. I don’t mind it so much, it’s the pain I dislike. Finding a balance between enough morphine to make the pain stop but not let the barfing start is tricky.

Night before last, I went to the movies by my self. I picked Still Alice because I was pretty sure no one would in that movie would get cancer but it was worse because when Julianne Moore’s character, Alice, gets diagnosed with early-onset Alzheimers, she says, “I wish I had cancer.” “Fuck you.” I said to the screen and only a few people turned around.

 

 

Choose your own adventure

When I tell people that I’m adopted, often they’ll say, “Oh, did you ever think of finding out who your ‘real’ parents are?” My mom and dad told me that I was adopted when I was really young. I don’t remember the exact words that they used, but they must have framed it in such a way that the news gave me the impression that while they weren’t directly responsible for my genetic material, they WERE the people who were supposed to raise me. I still feel that the people I called mom & dad are the parents I was supposed to have, and I’m not curious about my supposed other “real” parents; but I do feel just a slight bit of worry that they’re gypsies, or circus people and they might be missing teeth and/or living in trailers. It’s just a hunch I have.

I like the idea of baby spirits floating around on clouds, carefully selecting their parents. That’s why when Fireboy and I kicked off our IVF journey I made a fancy brochure that touted all our most appealing features. I was really going after the sophisticated, discerning baby market—the way a five star hotel would lure choosy guests. My informative brochure showcased all the benefits of selecting us as parents; from instant Ivy League legacy status, to our wide variety of in-house pets, to the high level of tech support and extensive library—including the complete and final print edition of Encyclopedia Brittanica! Swimming lessons! Travel to exotic destinations! Organic, home-cooked meals! I was really surprised when time after try, we had no little taker.

Then again, having me for a mom probably won’t be all gravy either. While I still remember each and every song, game and art project I picked up in during my 12+ years of teaching, I can’t run very fast anymore. I spend the better part of one day a week hooked up to an IV. And, if we’re being honest, I just might not be on this planet for very long.

I was in college when my mom died. Her death gutted me in a way I probably still haven’t full recovered from, but I loved her with all my heart and if I had it all over to do again—floating around on a cloud, clad in a heavenly diaper—browsing to discover the one perfect mom for me—I’d chose her again in a minute. She was and is, my “real” mom.

So, it makes my heart sing that there’s a baby that’s chosen me for a mom. Finally. A baby who assembled a team of brilliant doctors and a dedicated surrogate in order to incarnate Earthside. And while I might not be this little person’s “real” mother in the eyes of some, I know what the deal is. Also, while we might not be technically related, because this kid picked us, and the trouble it’s gone through to get here—I already like its style.

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