Eggless

Well I lived through my bilateral salpingal oophorectomy five days ago and I am here - eggless, puffed up, and pretty happy - to report on it.

First - a bit of synchronicity that even The Police could not have foreseen, not even HBO writers of shows like Orange is the New Black or House of Cards could've written any better: (disclaimer - some of you have already heard the story, but I thought I had to included in my blog for history because is just too perfect) I had saved up episodes two through 13 of Orange Is the New Black to watch after my surgery, and have been enjoying them very much this week. I had the surgery Monday at 8 AM. The doctor made three incisions into my abdomen, blew me up like a balloon and sucked out my ovaries. Felt like that.

On Tuesday I was getting  into my little nest of my bed, with my pain pills and my iPad, happily looking forward to binging on my favorite show. I had just squinched myself painfully into position and yelled "god DAMN IT!" when I inadvertently killed myself by using my abdominal muscles a bit, to which Siri replied "There is no need to use rude language!" because in my spasm of pain my fingers had gripped the iPad tightly and I had accidentally hit the Siri button. I was like "Siri! Really?!!!" but decided to carry on in pursuit if my goal. After flopping around like a drunken baby seal I finally straightened myself back up and got Orange Is the New Black season two episode eight restarted only to see the prison counselor say to the bald dying cancer patient in the opening scene this sentence: "The doctor recommends a bilateral salpingal oophorectomy, but it's not gonna happen." That's the surgery I had had 32 hours ago.

I'm pretty screwed up, here is a list of states of my post surgery state:

- very fat hilarious bloated round tummy full of gas (and who knows what else since all plumbing shut down)

- three bloody cuts sealed shut with shiny glue (top coat nail polish?)

- no baths or sex or swimming for two weeks 

- one of which (the ovarian exit stage left) hurts like a mofo so much that while I

- tried to drive yesterday for the first time I was ok for 20 min and then suddenly was like "oh hell's bells I'm gonna have to pull over on 183 - not a very cute highway - ROLL OUT of the car and rest for a few days in the gutter...hmmmm, that little patch over there overlooking Atomic Tattoo looks pretty good..." Not to alarm the kids I didn't say this, but instead made an unholy noise which freaked them out. I never knew how much you use your core muscles just to HOLD A STEERING WHEEL! Ladies who drive all the damn time - you're practically doing Pilates right there in your mini van! I pronounce you FIT!

- so here I am on day five sitting on the couch once again. I have given in, and I'm not going to try to recuperate any faster. I can barely move around, and I've had a lot of help from Mona who has been taking the kids to the grocery store for hours to get them out of my hair and making dinner for us. Thank you so much. What idiot would schedule surgery during the summer in a week when the kids have nothing going on for a week? Me.

The pain medicine I'm taking is called Vicodin, and it works sort of. Ever since I had chemo I have a different relationship with chemicals than I used to. However I've been having some amazing dreams this week, who knows why? Could it be because I have lost my ovaries and my hormones are completely out of whack? Could it be drugs baby? I don't know, here are a few of them:

A DREAM

I'm on top of a castle in the mideast somewhere overlooking a shining dark sea. The Red Sea? The sun is coming up, I've been up all night and I'm in a magical dreamy beautiful place. Arabic feeling. Sand.

Suddenly it turns into a world of boats, yachts with portholes and doorways and long hallways.You know how dreams are. And then I'm in a beautiful interior of a yacht with teakwood and sleek leather seats. Huge, rich, luxe, dark, manly. The sun shines mightily outside (feels Lewis Carroll-esque) we are cocooned inside a rich nest of a boat. I go down hallway after hallway after hallway, a man is following me. I know that I can't let him trap me in the back master super elegant luxurious room. It's all-white back there. Huge white bed covered with white sheets and white pillows and white quilts. White walls, white carpet, white ceiling, white portholes shut with white curtains. Soft. No exit. I go there, turn and face him - he's tan and elegant, Ralph Lauren-esque, I push past his sly smile, and run back out. 

Suddenly I am now worried not about him, but instead that his wife is going to find me and kill me. I go through a porthole and I move into a different world. I'm in a spaceship this time one that has gone back in time a billion years, it's moving quickly and I'm upside down but I don't feel any gravity. I know I want to escape this world because the wife is still chasing me. She is agile, tan from their yacht life (Greece?) with sleek shoulder length very dark hair. She is behind me. I go through another door and this time I'm on the deck of a sailboat. Or in a mariner's room full of beautiful clocks and art, sun beam. I pause in the silence. The sun is still shockingly hot and strong just outside. I continue the running fleeing feeling of her chasing me. I go through doors and trapdoors and portholes and windows, going into world after world after world, all boat themed somehow. It's like the scene in the movie Monsters Inc. where every time they go through a door they're in a new world. Or Lyra and Will in Phillip Pullman.

Finally I'm in the top inside of a tall glass tower looking out. On the outside of the glass right in front of me I see three people, standing on a ledge, holding onto hand rails. Three athletes dressed up in tight Lycra suits holding on to rails on either side of their bodies while standing and facing me. Outside. Way up high. We are hundreds and hundreds of feet up in the air, perhaps a thousand feet. There are spectators watching. These three are about to accomplish an athletic feat: they have to hold on and stay up on top of that tower without falling off while somebody far far below them throws a bottle of something heavy at them as hard as they can to knock them off. I grip onto my side of the glass and stare right into the eyes of the dark headed lady who I know is the wife that is been chasing me. Now I wish her luck silently. The bottles are flung up at them. Each is hit extremely hard, and one by one they all give me a look of horror as their fingers release. They cannot hold onto the grips. They crumple, scream in agony, vomit, and do backflips and then shoot down 1000 foot-long slides back down to the bottom in defeat. I wake up.

ANOTHER DREAM

Last night another dream: I'm at some kind of extremely fancy nightclub/red carpet opening/Dubai hotel/celebrity party. I've been getting ready with Kardashian type people, and I am completely outfitted in tens or hundreds of thousands of dollars worth of clothing and jewelry and diamonds. I have been talking about some kind of fancy drug with a young man. 

I have slipped down the hallway and I'm looking for some nail polish to glue onto the bottom of a beautiful natural piece of crystal quartz from a cave so that I can glue it to the top of a mirror somewhere, 12 or 13 feet high so nobody will scratch themselves when they look into the mirror. 

All of a sudden I touch something wrong and alarms go off. Doors descend - shutting us in a hall. The entire place is shut down. It's my fault. We are shut inside a room with security guards who make me and five or six other people that are in the room with me lay down on the ground. They peel off my clothing and inspect my body. They're looking for blood. I make eye contact with the drug man. We can't talk about the tiny earring we agree mentally. I worry about all the people in the hotel who are now going to be mad at me. I've shut down an entire party full of thousands of people. 

The scene suddenly turns into another sort of contest. We have to figure out a way to kill someone, we put together an intricate plan full of ropes and pulleys and slides and weights to come out of nowhere to knock the target on the head. I keep trying to distract some people so my team can make the plan. It's very complicated and scientific, full of physics. Then I wake up.

NOT DREAM

I have had five surgeries in 10 months. I am very sore. I cannot sit up very well. I can roll to my right but not to my left. I'm on the couch if you need me. I'm trying to look forward. I can't wait to teach my classes in the fall. They tested all the junk they pulled out of me and it was all benign and happy and safe. Yes. This year will end.

Surrender? Cheap Trick?

The song " Surrender" is by Cheap Trick.

Mommy's alright, Daddy's alright, they just seem a little weird.
Surrender, surrender, but don't give yourself away, ay, ay, ay.

This is dreamy. Actual. Actually dreamy as in I feel surreal unreal dreamt zoned buzzed eery. Months of trudging along through chemo, successfully, fainting and ER-ing, successfully, and lumpectomy surgery after lumpectomy surgery after just a little bit more a shaved edge of remaining tissue surgery after oh just a wee smidge more lumpectomy surgery, successfully finally, and radiation, successfully....all successful and DONE...why now do I feel such panic?

Surrender?

I sailed through it all toughly.

Then anxiety punched through the wall and grabbed me by the throat and kneed my groin and socked my stomach and kicked my shins and put his mouth up to mine and sucked the breath right out of my mouth my throat my chest my stomach, and then threw me to the ground and sat on me. 

Surrender.

Buddhists say it's monkey mind.

Psychologists wonder about the root fear.

Superstitious people say it's some kind of demon.

Some say the universe talks to you.

Psychiatrists say it's neurotransmitter imbalance.

Shamen say it's a spirit.

Rose colored glass wearers say it's bullshit stop it.

Poets say it's hell.

Social scientists say it's the modern age with its avalanche of information hitting us 24/7 way too much to process way too fast too much too much overload overload!!!! 

I agree with some sum of some of this.

Mommy's alright, Daddy's alright, they just seem a little weird.

Don't give yourself away?

I don't need advice or happy thoughts - they do not help. I am ok.

What fear could I have underneath my life?

Fear of death - maybe, well of course - we all do - but I don't sense that death is near and my fear/fascination with death seems about even with how it's been forever. I could be crazy, but I don't think this is it.

Fear of leaving my children. Yes, ouch, this is awful to consider. But if the above is true...? (Problem - I know that the universe is random and amoral so maybe the cancer thing simply reminded me that I am a millimeter away from these things now as I always was will be).

(I miss my mom).

So tomorrow morning is my oophorectomy. Arrive at 6:30 AM at the surgery center, surgery at 8 AM. Fiona is going to go this time and wait for me. She misses me when I'm gone from the house now for 20 minutes. This is taking a toll on all of us. It will be nice to see her too when I wake up. The surgery is fast and easy, at least for the doctor. Everyone says it's a piece of cake. I don't like cake.

Many good things have been happening right now, right alongside the underlying river of dread. I saw my sister, my soulmate, my keeper, my tea cozy.

And we had a small family reunion on my mother-in-law's side, and I met some wonderful people that I had never known until now. I don't have very many pictures of this, and will get more later. But it was wonderful to meet Peter and Stacy and Greg and Holli, and see uncle Dan. Many stories of beaches and schools and dogs and Brooklyn and movies and St. Louis and old/new times. Oh my God the world is so small it's no more than a globe in your living room. Last night at dinner I discovered that Mike's cousin Peter has met, worked with, and even stayed at the house of my friend Leila, here in Austin, to talk about documentaries and plays and projects. Freaky.

Holli is a fellow breast cancer survivor, and she gave me sustenance in the form of hugs and truth. Thank you.

My husband has been my driver, my bartender, my supporter, my particular carer, my chef, my helper and my rock during all of this. My kids are my 24 hour a day entertainment system. We are all managing to have the same silly Adams fun even though mom seems a little weird.

"Surrender" by Cheap Trick

Mother told me, yes, she told me I'd meet girls like you.
She also told me, "Stay away, you'll never know what you'll catch."
Just the other day I heard a soldier falling off some Indonesian junk that's going round.

Mommy's alright, Daddy's alright, they just seem a little weird.
Surrender, surrender, but don't give yourself away, ay, ay, ay.

Father says, "Your mother's right, she's really up on things."
"Before we married, Mommy served in the WACS in the Philippines."
Now, I had heard the WACS recruited old maids for the war.
But mommy isn't one of those, I've known her all these years.

Mommy's alright, Daddy's alright, they just seem a little weird.
Surrender, surrender, but don't give yourself away, ay, ay, ay.

Whatever happened to all this season's losers of the year?
Ev'ry time I got to thinking, where'd they disappear?
When I woke up, Mom and Dad are rolling on the couch.
Rolling numbers, rock and rolling, got my Kiss records out.

Mommy's alright, Daddy's alright, they just seem a little weird.
Surrender, surrender, but don't give yourself away, ay, ay, ay.

Away.
Away.

This is what I feel

It is very painful - this longing, for what, I don't know. A homesickness even when home. I feel very Pennyroyal tea, which may make sense if you know anything about Nirvana. I think pennyroyal is an herb used to induce abortion and Kurt Cobain maybe wanted to abort himself. I understand. I'm talking about nirvana the band, not the state. The state, actually, in which I find myself today is not very good. I'm done with a lot of the cancer stuff right? Here I am at the end of everything, or is it? Or am I? Oh are you?

I'm at the end of chemotherapy, I'm at the end of radiation, I'm at the end of four painful surgeries, everything is supposed to be wonderful right? But it's not, it's so anti-climactic that it hurts. It's hard, A hard anti-climax. I'm so mentally stretched and stressed out that the universe has turned itself inside out and is folding up in on itself like a velvet watermelon. That doesn't make any sense and I don't give a shit. This is how I feel.

PENNYROYAL TEA

I'm on my time with everyone
I have very bad posture

sit and drink Pennyroyal Tea
Distill the life that's inside of me
sit and drink Pennyroyal Tea
I'm anemic royalty

Give me a Leonard Cohen afterworld
So I can sigh eternally

I'm so tired I can't sleep
I'm a liar and a thief
sit and drink Pennyroyal Tea
I'm anemic royalty

Lemon, warm milk and laxatives
Cherry-flavored antacids

sit and drink Pennyroyal Tea
Distill the life that's inside of me
sit and drink Pennyroyal Tea
I'm anemic royalty

"Pennyroyal Tea" by Nirvana

I'm so tired I can't sleep

My timeline with cancer is so not the Lifetime channel plot where you get through each step and burst through the finish ribbon at the end, bursting with pride and joy as the crowd bursts into bursting applause. I'm not dissing my support staff - my friends and loved ones have been loving and friendly but this is getting old. It's too long and we lose interest. It's not a clear journey. It's confusing. When is the intermission when do the cheerleaders rah rah when do we serve cake when is the party?  No, I've taken a more circuitous route that seems to meander around and around like the sludge at the bottom of a crockpot. I'm in the crockpot of cancer and can't get out. And it's unplugged and the chefs have departed.

This is how I feel.

So don't tell me things are all right and that I'm doing so well and have the best treatment and attitude and right support and right treatment and right care and right doctors and luck and things are just awesome that pisses me off and almost literally makes me sick and you don't want to make a cancer patient suck do ya? I'm not a Hallmark card I'm a person and this sucks.

My cheer has exited on a tide of unswept porch leaves. It may come back in but right now it's low tide.

However secretly I'm above all this and ok.

Radiation ended two Fridaya ago. No hoopla, no one really noticed, not even me. The rays kept boiling my molecules for days (weeks?) and I'm still broiler-red and scabby and bone sore, and yes I think the radiation broke part of my lung or something because I had beastly pleurisy pain on and off (only off because slayed by drugs twice thrice) that instantly sprang up when I got zapped. 

Anyway - that department of cancer ended and I was sent to the department of post-everything-else stuff. Which means for estrogen positive breast cancer types like me (we are very common - how gutter snipey of us) NOW YOU HAVE TO TAKE POISON PILLS FOR TEN YEARS TO SHUT DOWN ANY ESTROGEN IN YOUR BODY! 

Odd things about this:

1. Isn't this "chemo" therapy cuz it's chemicals? 

2. Isn't estrogen kinda good for your - you know- BODY? As in bones, heart, brain...not to mention your female sexuality sexual sexiness sex stuff? Well yes it is. Without it will I shrivel into a dried crone toast end?
3. Well yes but here is the deal - breast cancer just LOVES estrogren - it's like food for the cancer, so if you have my kind of breast cancer you better get the rest of the estrogen in your body the hell away or the fucker WILL COME BACK.

4. Statistics argue strongly that it's a very very good idea to do this anti estrogen thing - it super helps your chance of breast cancer not coming back SO I AM GONNA DO THIS STEP even though I don't want to
The drug of choice for this is Tamoxifen. It is an estrogen blocker - when the little cubes of estrogen try to dock in the estrogen docks, it gets in the way. But I have a problem with this - if you have ever had a blot clot or stroke or bleeding in the brain you can NOT take tamoxifen, because it can cause blood clots and do really bad things to you like kill you. I did have bleeding in my brain, or what's known as a TIA, transischemic attack, otherwise known as a small stroke, in 1995. So I am not a candidate for tamoxifen. I told my oncologist all about my brain bleed and the idea that Tamoxifen seemed like it was contraindicated for me back in August when I met her, because I had already read ahead and knew about it. I had an instinct intuition that Tamoxifen would be BAD FOR ME.  I told her again in September, October, November, December, January, February, March, April, May, and yesterday. Yesterday she said "Really?!  You didn't tell me that!" And then she looked at my file and realized that yes it was true I could not take tamoxifen. She was surprised. I was not. And the little anxiety man that lives inside me started to run.

So for people who can't take tamoxifen there's another class of drugs called aromatase inhibitors. Instead of blocking estrogen, they inhibit other hormones in the body from turning into estrogen, things like testosterone and androgen. Those hormone sometimes go into little changing rooms at the back of Victoria's Secret and  take off all their clothes and put on little pink panties and bras and they turn themselves into estrogen and when they come back through the curtains they are now estrogen, and no longer what they used to be before they changed. Aromatase inhibitors don't let them do that. They INHIBIT this change. I guess they're kind of like little bouncers hanging outside of the changing rooms to stop the transformations.

The result is the same as with Tamoxifen - less estrogen, therefore less chance of breast cancer returning = good.

Some interesting facts about taking aromatase inhibitors:

1. You absolutely cannot take them to prevent breast cancer from returning unless you're 100%, no actually make that 300% done with menopause. As in it's been two years since menopause hit and your ovaries have completely exited stage left. As in no periods for two years. 

2. Why? Because if your body has any estrogen left in it, if there's any wind left in the sails of your ovaries, and they get a whiff of the chance that these aromatase inhibitors are NOT letting other hormones turn into estrogen, guess what? The ovaries panic and worry that someone is stealing estrogen and decide they need to MAKE MORE! They go in to full overdrive - pumping out estrogen like the Beverly Hillbillies' oil well. This is stupendously dreadful bad because it makes breast-cancer come back.

3. So doctors only give aromatase inhibitors to people are completely in menopause for sure for sure for sure for sure for sure.

4. No one is sure if I'm in menopause or not, I haven't had a period since last summer, but most likely chemotherapy just put my ovaries to sleep. There's no really good definitive way to measure this, because blood tests only measure one moment in time. So nobody knows if I'm in menopause or not. Oh great. Fuck.

5. So... The only option is to manually shut down my ovaries. This can be done in one of two ways:

    A. Shots that squelch the ovaries - every few months until the mountains crumble into the sea. And the side effects "make you feel really bad."

     B. Oophorectomy (cool word huh?!) - ovary removal! Through laparoscopic surgery, your two little gonads are sucked out, therefore completely obliterating any ovarian production of estrogen. 

PROS:

Gets rid of chance of future ovarian cancer

Quick easy surgery easy back up on feet part

My doctor is skilled at this

Shuts down estrogen effectively so that aromatase inhibitors can be safely used, increasing my chance of long term survival (re: not croaking from breast cancer)

CONS: 

Throws you into instant menopause - harsh

Low/no estrogen puts you at risk for osteoporosis, heart disease, Alzheimer's, dry vagina, weight gain, low libido, crepey skin, loss of collagen, frumptitude and bitchiness. Well I already have a few of those right? Oh yes and insomnia and hot flashes. Got those.

My oncologist (Dr. G)?wanted me to rush and go consult with my OB (Dr. S) about this. Huh? WHAT???!!!! I thought YOU were in charge!!! This whole "who's in charge" thing has been a real cluster fuck but no matter I shall charge forward and did - I finagled an appointment the very next day...

Nice/good/wonderful unexpected thing: I've been going to the same OB practice for 20 years, and had a really great doctor who was pretty famous and awesome named Margaret Thompson. A few years ago she decided to go to law school at the age of 55 (I love this) and left the practice and sold it to Dr. S, so I inherited a new OB - one that I've never met! An invisible secret OB. Every year when I would go in for my well woman check, I would just see the same nurse midwife Lisa I had always seen, so I never had the chance to actually meet the actual doctor under whose practice I was a client. I always thought "Eh...whatever, I'm fine with my sweet nurse Lisa, who cares if I see the doctor?" 

So when my oncologist Dr. G that I should talk to my OB, my ACTUAL OB DOCTOR I thought, oh great yet another weird kink in this bizarre story of my cancer journey: I've never even met my freaking OB! 

Well today I got to meet Dr. S and I just loved her. 

Thank Ye Goddesses. 

Yesterday when the oncologist said I needed to hurry up and meet with my OB for opinions about having my ovaries removed, I felt slighted, ignored, pushed away. I have been feeling lately like my some of the cancer doctors are just shuffling me off to Buffalo - I don't really know what's going on or who's in charge, so it was with a heavy heart that I made my appointment to see the OB today.  Dr. S walked in and I just said help. She was kind, compassionate, smart, attentive, aware, with me, with it, waving on my wavelength, on the ball, kind, kind, interested in me, engaged, and fascinatingly smart. And kind. She listened to every single word I said, and to the words I didn't say. She explained a lot to me in detail, and then said she wanted to do more research and reading up on this and come up with a game plan for me in one week. She said I want to see you in one week and I'll have a plan. Do you know how much I love that? She had the nurse take my blood so they can test for my hormones right now, even though we all know one blood test is just a snapshot in time, but at least it will give her some information. 

I felt like I was managed and cared for by someone who knew what the hell what's going on. Her receptionist said I couldn't come back for two weeks, but she intervened and got me squeezed in for exactly a week. Then later today Dr. S emailed me, after studying up on my case and the latest science, and she does recommend that I have another surgery to have my ovaries removed soon. She included a copy of a report that she read that she thought I might enjoy reading. Thoughtful.

This is how I feel.

So. 

I think I'm about to have a fifth surgery in the last nine or ten months. I feel completely numb except for the time that I am so freaked out but I can't breathe or think. Like all night long every night when I can't sleep. I am about to embark on new chemicals but for the moment I am on no drugs and on a searing roller coaster ride of anxiety. I am going to right this ship and write this blog and ride this storm

This is how I feel:

Shitty

Not drunk

Pissed

Bored

Restless

Not hungry

Incurious

Dull

Like eating fish skin

Drowned

Flat

Burned

Panicked

Hopeful but only for a minute because the I must not have inhibitors to stop good feelings from transforming into panic - that is: if I LOOK or THINK or CONCENTRATE on something good coming up it squeezes my throat and hurts me so I look away

Sick

So tired but sleepless

Panicked that the poor sleep will turn onto Alzheimer's (on the news) or breast cancer or poor posture or bad parenting or heart attack or stroke or more anxiety yes it is (do you know how not helpful it is to have sleep problems and then be bombarded with NEWS and IMPORTANT NEWS that lack of sleep is BAD for you???!!!)

Removed (in lucky minutes)

Apologetic - shouldn't I be rallying my troops and better at this?

This is how I feel.

This is how I look - today marching in the broiling sun to HEB in long sleeves angrily marching just to have something hot and awful and painful to do to distract 

This is what I read:

There Comes the Strangest Moment

There comes the strangest moment in your life,
when everything you thought before breaks free--
what you relied upon, as ground-rule and as rite
looks upside down from how it used to be.

Skin's gone pale, your brain is shedding cells;
you question every tenet you set down;
obedient thoughts have turned to infidels
and every verb desires to be a noun.

I want--my want. I love--my love. I'll stay
with you. I thought transitions were the best,
but I want what's here to never go away.
I'll make my peace, my bed, and kiss this breast…

Your heart's in retrograde. You simply have no choice.
Things people told you turn out to be true.
You have to hold that body, hear that voice.
You'd have sworn no one knew you more than you.

How many people thought you'd never change?
But here you have. It's beautiful. It's strange.-- Kate Light

"The Purpose of Time is to Prevent Everything from Happening at Once"

Suppose your life a folded telescope
Durationless, collapsed in just a flash
As from your mother's womb you, bawling, drop
Into a nursing home. Suppose you crash
Your car, your marriage -- toddler laying waste
A field of daisies, schoolkid, zit-faced teen
With lover zipping up your pants in haste
Hearing your parents' tread downstairs -- all one.

Einstein was right. That would be too intense.
You need a chance to preen, to give a dull
Recital before an indifferent audience
Equally slow in jeering you and clapping.
Time takes its time unraveling. But, still,
You'll wonder when your life ends: Huh? What happened?

-- X. J. Kennedy

This is what I see: