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.

 

bitch-you-ok

 

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:

7471983_f260

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.

meme-cat

 

The five minute freak out

present

Ugh, it’s scan time again. Usually in the weeks leading up to scans, the voice in my head will spend a good part of the day (and most of the hours when I should be sleeping) imagining and narrating all the potential outcomes of these tests and just generally winding me up into a hysterical pitch.

Not this time.

This time I’m armed with a Cognitive Behavior Therapy tool which I have catchily dubbed The Five Minute Freak Out.

A nice therapist I work with sometimes thought it might be useful in managing the stress around my upcoming scans and I honestly don’t know what it’s really called, or if it even has a name—but it works like this:

Whenever I have a thought related to my scans or their results, oh—say something along the lines of, “I bet I’m going to find out that everything’s worse. It’s probably going to be terrible news. Oh my God, my pinky feels weird. I bet I have mets in my pinky. Ow, my pinky hurts. It didn’t hurt yesterday. Yep. My scans are definitely going to show that I have cancer in my pinky now. Oh my poor, poor pinky finger. WHY, GOD? WHY?”

— Rather than slip sliding into that somehow satisfying yet terrible whirlpool of conjecture, I stop that thought cold, and say to myself, “Self, you stop it right now. It’s not time to think about that. I am not going to think about my scans until X o’clock.”  The idea being that my scaredy cat subconscious will pipe down once it is assured that it will have a platform from which to broadcast its hysterics.

So, at the appointed time each day (in my case, a time when I am alone and not wearing mascara) I allow myself exactly FIVE MINUTES to freak the fuck out. I let my mind run wild. From the morbid, not-even-remotely-grounded-in-reality potentialities to the much more likely—I set the timer and I set my mind free.

Five long minutes later, I wipe the snot off my chin, dry my eyes and switch mental gears from negative— to neutral statements. It’s not as easy as imagining the worst case scenario,  but I force myself to ponder a few reasonable thoughts such as, “There’s no possible way for me to know for sure what is going on inside my body. I will find out only when my doctor gives me the results.” I roll those around the echo chamber for a bit and then finish off with a grand finale of of pie-in-the-sky positive daydreams, such as, “These drugs are working like a charm! I am kicking cancer’s ass!” Because, why not?

And that’s it. While I might be using it to cope with scans, I’ve been told that anyone could use this strategy to train their brain to deal with all sorts of unwanted recurring thoughts. I’ve only been at it a few days, but I can honestly say it works. Somehow, I find my inner alarmist piping up less and less often, content to cram a whole day’s worry into five sweeps of the second hand; leaving me 23 hours and fifty-odd minutes to actually enjoy the here and now. Which is all any of us really have, anyway.

 

 

A post about my butt

mirror

I am envious of women coming of age in the world during these times. Today, there are flat irons to tame unruly tresses and bodacious booties are all the rage. Back in my day, we walked around with horrible, puffy hair and wore baggy clothes—tying sweatshirts around our waists in an attempt to camouflage our curves. The beauty icons of my formative years were The Heathers (Thomas and Locklear) scrawny, no-butt runts by today’s Twerk Queen standards.

That said, I’m not gonna lie—when I first started losing weight (before I realized the cancer was getting out of control) I was stoked. While I had never exactly been heavy, I definitely had never been model-thin. The loss of the first fifteen pounds coincided with a trip to Cabo where, for the first time in my life, I felt pleased with my figure and pranced around shamelessly, wearing nothing but a tiny emerald green bikini the entire week.

As the pounds continued to melt away, I watched first with awe and then a growing terror as my thigh gap became a chasm and my once pleasantly plump arms morphed into matchsticks. I discovered bones I never knew I had in my collarbone and coccyx and made sure that when leaving the house, my clothing covered every inch of my body. I began longing for the days when I could sit in a bathtub without wincing in pain from my bones clanking against the porcelain and began to ogle other women, comparing my emaciated form to their juicy, healthy shapes. Before I knew it, I had traversed the body shame spectrum in its entirety—from “flab” to fragile.

Last weekend Fireboy and I hit the mall. He’s a fit dude, a runner; so I trailed him into Lululemon, where he browsed for shorts while I slouched around the sale rack, desperately avoiding eye contact with the totally ripped Bikrim devotee pacing the sales floor in a bra top and spandex pants.

There was actually a pretty decent sale going on, and while I don’t work out, I do love to buy clothes. Because I had no idea what my current size was, I took my find (waffle knit sweater pants) to the fitting room.

A perky blonde screamed, “Let me know if you need any help” into my face and scrawled my name on the dressing room door.

Now, while I am feeling much better these days and am no longer dragging an oxygen tank everywhere I go, I do get tired quickly and find it hard to get dressed while on my feet. Thankfully, there was a small stool in the dressing room so I sat down and pulled off my jeans.

I maneuvered my feet into both legs of the sweater pants and reached for the waistband. My plan was to pull up the pants as I was standing—in one fluid, energy-conserving motion.

Then it happened.

I saw my ass in the mirror.

Wait. Was that really mine?  My wonderful, happy American Girl Ass had been replaced. What I saw in the mirror was the rear end of a 75 year-old man wearing a thong. Or was it a dehydrated peach? Reeling with the shock of it all, I tried to sit back down, but the pants around my knees sent me and the stool clattering to the floor. “Is everything okay in there?” chirped the salesgirl. I could see her feet under the door. Oh my lord! What if she uses her key and opens the door? WHAT IF EVERYONE IN LULULEMON SEES MY OLD MAN ASS?

Scrabbling around on my hands and knees groping for my jeans while kicking the sweater pants off my feet, I tried to choke out a nonchalant grunt in reply. Once I got back into a standing position, I pressed my back up against the dressing room wall as though I were standing on the ledge of a fifty story building and somehow managed to get back into my jeans without bending either leg. Successfully avoiding another confrontation with the monstrosity in the mirror, I casually sauntered out of the demolished dressing room, smoothing my hair and straightening my glasses as I walked past the very confused sales clerk.

“Find anything?” asked Fireboy, seeming not to notice how sweaty, pale and breathless I was.

“Yeah. I’m going to get these pants.”