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.

wifibaby

 

The get down and stay down

A while back I was fortunate to pick up a new client for my freelance editing work. A woman —who due to life having dealt her a quick succession of huge blows— had become a Certified Grief Coach and written a short guide on the subject. A fun, upbeat guide, actually.  I learned a bunch of things while editing her book, surprising things.

1. Don’t ever hand a crying person a tissue

Why? Because that’s you saying, “Please stop that.” When I tell people this, they seem dubious, but I can tell you from experience that this is true. I had a therapist who used to hand me tissues and I absolutely bristled every time she did, without knowing why. Instead, you should casually nudge a box of Kleenex in the crier’s general direction, so they can find their own damn tissue, when they are good and ready.

2. Don’t put your hands on a crying person when they are sharing something with you

Your creepy touch is just your body’s way of saying to the sad person, “Here, now. Let me give you a hug so we can quit this intense conversation and just go and get the damn Starbucks coffee like we had planned and oh my god you are making a SCENE please stop.” Why not keep your hands to yourself and try eye contact instead? I have little firsthand knowledge of this technique, but my European friends swear by it and that’s just when they’re toasting drinks.

3. What you think you know about the “stages of grief” is probably wrong

You know, that Elisabeth Kubler-Ross model of the stages of death and dying? Those stages she came up with that you’ve probably heard of—”anger”, “bargaining” etc— those were stages that she hypothesized people went through when THEY were dying, not stages people went through grieving. Also, she never said that was all of them or that they had to go in any particular order.  Just so you know, there’s no right way or wrong way to grieve and no time limit either, so don’t be one of those people spreading these rumors.

There’s so much we all have to learn living in this society that tells us our tears have no value and pretends that death is something that only happens on TV. So, here we all are. Floating around on a sea of sadness, each on our own rickety raft. Handing out hugs and tissues no one wants, ticking off a checklist that doesn’t even apply.

I’m no grief coach but I do have a black belt in getting by. In my struggle with feeling sad I have come to rely on a key technique I like to call the get down and stay down. The get down and stay down is the polar opposite of the keep calm and carry on. The get down and stay down is the move you bust when you have simply had enough. There’s only so much effort that a person can expend trying to hold it together. Sometimes you gotta just throw in the towel. It can be as little or as much as you require. Sometimes it means turning off the phone and crawling into bed at 5 pm. Sometimes a 90-minute bath does the trick. The key is total, absolute surrender. Sometimes we have to get all the way down before we can get back up.

So, today—for just a little while—I give up.

 

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Everything was beautiful and nothing hurt

ever been so mad?

I used to be a really nice person. I had one mood, and it was good.

Nowadays, I am feeling not so nice. I have several thousand moods and they range from mild annoyance to fury. There’s a condition people refer to as “chemo brain”, which is the short-term memory loss and general absent-mindedness that people report after having undergone chemotherapy, but no one gave me a heads up about cancer rage. Cancer rage is the name I’ve given the condition that results when your body, mind and spirit all hurt so much from the heavy lifting of this disease that you involuntarily become kind of a jerk. Symptoms include eye rolling, sarcastic comments, pouting, stomping, mood swings, cracking your chewing gum and aggressive lane changing.  

If I had a dollar for each time I’ve lashed out at someone I love, I’d take them all on an all-expenses paid getaway. (Which they deserve. Trust me.) The thing that is so very diabolical about cancer rage, is that it happens when I am in very real physical pain and feeling isolated and the end result is that the pain is still there, but the isolation is multiplied tenfold. I’m sorry. I’m sorry. I’m sorry . . .

So, while I used to be 100% nice and 100% cancer-free, I figure between my lungs, lymph nodes, bones, gall bladder and liver,  my current TMP or, Total Mean Percentage is hovering around 62%. Since I just invented this condition, I don’t have any idea what the end-stage looks like. Maybe once I hit 75% TMP I will transcend petty anger and feel only happy again. Maybe I’ll get so freakin’ mean my teeth will turn into fangs and I’ll grow scaly armor and wings like a dragon and I’ll fly into a volcano. Consider me the world’s first cancer rage research scientist. I’ll take notes and report my findings. I apologize in advance if they seem bitchy.

 

 

 

 

The oven mitt and the dishwashing glove

Do you watch Downton Abbey?  Each night, after the slaves go back downstairs where they belong, Lady Cora sits at a dressing table wearing a silky nightgown and rubs gallons of lotion onto her hands while listening sympathetically as her husband, Lord Grantham, blabbers on and on about his dog or whatever else he’s worried about until he shuts up and then they to go to sleep.

Since I take all my cues on womanhood from British period dramas, I understand how important it is to look glamorous even when sleeping. I’ve always made a point of keeping as much outward evidence of  this illness out of sight as possible, especially in the bedroom. Partially for my own sanity, but also in an attempt to maintain my feminine mystique.

Pill bottles are easily hidden—the trappings of lymphedema, not so much.

First of all, there’s my giant Lunch Lady Arm itself. While it’s now 78% smaller than it was, it is still bigger than my other arm. Not that my man would ever be likely to see it—it is to remain wrapped 23 out of 24 hours per day. The “gold standard” of lymphedema management is wrapping with short-stretch bandages. That is, the effected limb is kept wrapped, at all times, mummy-style. Let me just say, wrapping with bandages is a total pain in the ass. It’s an awkward thing to do on oneself and all those bandages winding their way up an arm tends to attract both stares and questions from strangers. Once I got the all-clear to switch from bandages to compression sleeves, I jumped on it. I still get questions from nosy, concerned strangers, but my sleek sleeve and gauntlet are easy to put on myself and I can fit my arm inside long sleeved shirts again!

The only problem with the compression sleeves are that they’re too squeezy to sleep in. This meant I was forced to ditch my cool looking sleeve and revert back to mummy arm every night. Maybe if you were in love with an egyptologist this might be a good look, but I think most regular dudes do not find bandages appealing in any way. That in mind, I kept my wraps hidden in a box under my bedside table—only putting them on at the very last minute before falling asleep.

Now there are special sleeves made to sleep in and when I say “special” I mean “expensive.” I’m talking in the $500-700 range. They cost that much because they’re custom made to measure. I wouldn’t think twice about spending that much on a dress or a pair of shoes but a hideous medical device? Puh-leeze. No freakin’ way. However, I recently learned that prêt-à-porter sleeves are available for a fraction of the cost of the couture versions. “Self,” I said to myself, “This is what we have been waiting for! So long hideous bandages!”

Finally, the day came when my new night time sleeve was delivered. I don’t know what I was expecting, but I joyously ripped open the package to find . . . a gigantic, royal blue four foot-long oven mitt. (pen shown for scale)

oven mitt

Oh, but that’s not all. The oven mitt was accompanied by a . . . medical green rubber spiked dishwashing glove?

rubber glove

Apparently, since the oven mitt is a non-adjustable, tightly-fitting garment, the other arm (the one putting it on) needs to have an especially tight grip in order to help lodge the effected limb down fully into the garment. That’s what the rubber glove is for. In this Faustian bargain, I had traded a demure pile of soft bandages for a quilted cylinder the approximate size and length of a tube of gift wrapping paper and one stinky, ugly rubber glove. Neither of which I imagine any man would want to discover in a bedside drawer nor on the body of his sleeping partner.

Since it can’t be rolled or folded, I store the giant oven mitt way up on the top shelf of my closet and the dishwashing glove lives in my former bandage box. When bedtime rolls around, I stealthily snatch up the rubber glove and step into my bedroom closet, closing the door behind me. I put the rubber glove on my right hand and hold my oven mitt between my knees, shoving my left arm down as hard as I can while pulling up with my right. Once I’ve wriggled into my oven mitt I burst out of the closet; jumping into bed, slam dunking my rubber glove into its basket and pulling the covers up over my shoulders in one graceful motion. Sort of.

Overall, I’d say the oven mitt is worth it. It’s not sexy but it does the job it’s supposed to. On the bright side, if there’s ever a late night house fire, I will use my oven mitt to open red hot windows and doors with ease.

This is my oven mitt. I ordered from Bright Life Direct and saved a few bucks of the MSRP, but be aware their shipping is s-l-o-w as molasses. Having lymphedema sucks but even worse, is that treatment (and necessary items such as bandages and sleeves) are not covered by Medicare—and thus, any insurance companies. The Lymphedema Treatment Act is a proposed federal bill, which will change Medicare Law and set a precedent of care for private insurers to follow. You can help by visiting http://lymphedematreatmentact.org/.

 

 

 

 

 

Part fig, part raisin

“It’s a mixed bag”

Mixed bags are for nuts. Or  bagels. Or golf clubs.

Mixed mags aren’t made up of shrinking lung tumors and growing lesions on gall bladders and kidneys.

The French phrase, “mi figue, mi raisin”  means “sorta fig, sorta raisin”. That is, something which is not all good, but not all bad. In the 15th century,  shady Greek merchants, who sold currants—raisins de Corinthe in French—would cheat customers by hiding figs (which were cheaper and heavier) at the bottom of their bags.

If my body was a load of raisins and figs being sold by a shifty peddler, my lungs would be at the top of the bag, with my liver and gall bladder hidden heavily at the bottom. The person who purchased this bundle of rubbish might think “Dang, this giant bag of getting-better lung is so heavy!”  But when they got home and unpacked it they would have been uber sad to find that concealed way down on the bottom were one cancerous liver and gall bladder. Ce une déception. What a bummer.

In other obscure idioms, if yesterday’s doctor visit was  a cartoon entitled True Humility, that was published in the British magazine Punch on 9 November 1895, it would have looked like this:

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As we all know, a single egg cannot be both part spoiled and part fresh. The curate pretends to find parts of yumminess in a bad egg in a desperate attempt to find good in something that is irredeemably bad. And while the curate’s egg is 100% rotten, my scans are not.

So, while I didn’t get the happy news I had hoped for, I did pick up a bit of outmoded French and I learned what a curate is. I sent my scan report along to my Oriental Medicine practitioner and he gave me the number of a surgeon in SF who is currently doing a new laproscopic zapping treatment of liver lesions. I’ll give him a call on Monday and the learning continues . . .

 

 

Squeezed

“This is going to take about 40 minutes, so feel free to take a nap.”

After climbing up onto the bed of the bone scanning machine, that’s exactly what I do. In my mind’s eye, I see the imaginary forest where all my guided visualizations begin. These mental exercises kick off like they’re supposed to—I see the trees arcing high over my head, I feel the soft loamy earth under my feet—then my mind gets bored and wanders off, making lists, replaying conversations, thinking about lunch.

BONK

Wha? Suddenly I am wide awake. I open my eyes and struggle to focus on the object that is way closer than it should be—the upper portion of the massive machine I am lying in. Which is moving. Lowering. Towards my face once again.

BONK

The smooth plastic squishes my nose against my cheek and retreats, slightly. I wriggle north a few inches as it comes down again. Lower this time, and onto my chest.

SQUEEZE

I yell for help. The operator is in an adjoining room, because radiation. Within seconds, she comes running—pushing both arms forward between myself and the beige behemoth that is on attack, french press-style. As soon as her arms are in, the tray raises politely, as if nothing happened.

I trusted you! I think to myself. The operator tells me it has been seven years since she has seen this happen. Apologizing on behalf of the machine, she tells me that I am small, and hard for it to “see.”

Right. Let’s try again, shall we? I keep both eyes open this time.

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