September 14 report

I haven't blogged in a while. I keep meaning to but then forget or something. 

I feel strange these days and I'm trying to get out of that. It's been seven months since I had an IV of poison chemicals dripped into me, four months since I've had a breast operated on, three months since I've been bombarded by radiation, and a few months since I've had my ovaries taken out. And a few months since I started taking a very tiny white pill called Aromasin (Exemestane original name) to prevent my body from making the estrogen that my kind of breast cancer likes to use to grow.

Here's a quote from rxlist.com about this pill:

"AROMASIN® Tablets for oral administration contain 25 mg of exemestane, an irreversible, steroidal aromatase inactivator. Exemestane is chemically described as 6-methylenandrosta-1,4-diene-3,17-dione. Its molecular formula is C₂₀H₂₄O₂ " 

See, I lose track.

These pills are tiny and cute, like something Hello Kitty might lap up, if she were a cat. They are sugary on the outside. 

Side effects include:

Bone density loss - check (mine is down 25% and I have osteopenia and all that jazz yes shut up I know I know I'm taking calcium and jumping up and down)

Bone pain ranging from mild in one area like your middle toe, to severe like you're back is crumbling - I'm just stiff and creaky with sore knees and fat morning fingers (Ha ha fat for me! Have you SEEN my stick fingers?!) and knees that twinge when I go down stairs - I just ignore all that and don't care

Insomnia / depression / fatness / anxiety / crepey skin / uglitude / sagginess / and all those other lovely menopausey things ramped up for fun - I ignore those too and mostly I succeed but some creep up on me here n there

So. Here I am now. Supposedly cured. I dunno.

SIDE EFFECTS REPORT FROM MONTHS OUT

Chemo:

1. Things taste normal again

2. My hair is back really dark and curly. Not in a good way - kinda frizzy and grows straight up like Kramer's. I couldn't have bangs if I tried - they just go up like a hedge. I got it cut into a freaky mullety thing that people like and laugh at - I laugh with them. 

3. Heart - who knows? 

4. Nails - fine

5. Nausea etc - gone

6. Eyes - still water annoyingly 

7. Psyche - creeped out at the thought still 

Radiation:

1. Very sore spots inside my body in my bones - like the bone itself is bruised. If I lift my left arm up and push in about two inches under my arm it's super duper tender like I was in a football game and got kicked there and broke a rib. Also there's a spot on my back about six inches around if you traveled by tiny Hot Rod car from under-armpit area #1 kind of spiraling down about an inch that feels the same way. Like if I lean back on a chair. These are things that make me go "Hmmmmmm..." Yes they are "normal" side effects and "everyone is different" and "we aren't exactly sure why" blah blah but I have to think - what the HELL do microwaves DO to your BONE to cause non changing pain for months and months and months? Eek! Are they getting mushy? Dying? Molding? Bleeding? Green? Cracking? I do want to know.

2. Skin that was radiated is paler and dry but not bad.

Radiation and/or surgery:

1. Stiff and sore muscles under that arm and along side and back - oddly now more that right after surgeries and radiation. Have to stretch it out. Lots of women get frozen shoulder at this point from not stretching enough.

I'm existentially existing along. Back teaching at St. Edward's with a delightful batch of students. The world news depresses me. I'm happy of course to be beyond the year of breast cancer. But I find that I've withdrawn a little. I don't feel like getting out much and have been not as good as I used to be about staying in touch with friends or making plans. Have you noticed? I need to finish my landscaping but don't feel like it. And the pantry. And get ready for a meeting. I'm a little scattered. But I don't care. I dream about my brother throwing a spatula into the woods, or a dog bursting out of a box behind me to curl around me and bite me or a river flowing under a prison cell that a boy dives into through a hole in the floor. I want to read a good mystery. I want to rest and sleep and repose.

I am with Violet and Fiona. And Mike.

Wandering around

Do I write this blog any more?

I don't know. 

Does / did anyone read it.

Well yes they did, not sure anymore.

Today I was wandering around the aisles of Target looking for yet another binder in the endless gathering up of the uncountable school supplies of my little big kids. I saw a few ratty fat binders on the end of one aisle, oddly adjacent to some minty vaguely Christmassy chocolate. But where is the selection? I asked an invisible woman (you know - one of those, like me, sort of 50-ish, mostly average sized, rather pale, pretty forgettable females. As in "Huh, yeah officer I guess I saw someone - not sure what she looked like, I didn't really notice" kind of people) where the actual binders were and she said blah blah over blah blah there or something. I didn't listen but said my part: "ok thanks!" and wandered off. 

But...my subconscious, my mind's eye, had seen her. And this inner mind stopped me in my tracks. She had had on a scarf, and seemed to have no hair. So I literally walked backwards back to her, and broke the social bubble around her by saying "Excuse me, but I see you have a scarf on and I was wondering if you were going through chemotherapy?" 

This was very rude or forward of me BUT I HAD TO DO IT. Because I saw her in that instant and knew that nobody saw her. 

When I was going througn chemotherapy I constantly read that one in eight women in the United States was diagnosed with breast cancer. I wandered and drove all over Austin bald, in my hats and scarves, but literally never saw another person like me out there at HEB at Central Market at Whole Foods at the library at the post office at the Arboretum at school at Walgreens at Old Navy at Thundercloud Subs in a parking lot in a crowd in a line in a store in a field. I wondered: where are all the women with no hair? Maybe they were wearing extremely great wigs. Maybe they were staying inside. I think they were staying inside. Why were they staying inside? 

So I approached Eza. She smiled and said yes I am doing chemo, and so I patted her arm and told her I had too and now I feel very fine. I said look at me my hair. I asked her all about her and she expressed how happy she was that I'd asked. We talked for a long time like cousins that find they like each other upon meeting first time at a wedding. She works full time, nauseated, at Target, bald and pale. By the way, she says that Target treats her very well, and has been accommodating. I asked her she had help at home. She said her two sons were nice. She smiled a lot. She didn't want to let me go.

Update on me:

1. I am ok.

2. On an estrogen blocking pill that's not bothering me. Aromasin. That's all that's left of breast cancer treatment - a tiny daily pill for years. I guess I don't have breast cancer any more. There was no official finish line or parade, but I think this is true.

3. Kids back at school.

4. I will be teaching two classes in the fall at St. Edwards. I will be working Mondays Wednesdays and Fridays and have a class at 9 o'clock, and a class at noon. I am very much looking forward to it although I do not like the textbook I have been assigned and I'm trying to devise a sneaky way to throw it out the window.

5. Come by for happy hour any night at 6 PM.

6. I do not identify with breast cancer. I forget all the time that I had it. I read about women with breast cancer and feel badly for them and think how lucky I am not to have ever had it. Then I remember.

7. I had a wonderful dinner last night with Debbie, a good friend who was diagnosed with breast cancer around the time I was. She's a few weeks behind me in treatment and her hair is adorable, kind of like a flattened out crewcut. We talked and talked and talked, and we both feel lucky to be where we are right now.

I'm still having fun, or actually I'm having more fun again, with my girls and their girls and our Mike.

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:

Drawing a blank

I'm getting close to the end of radiation, and about to come to my next step in cancer therapy: hormone suppression treatment. This consists of taking a drug to block the estrogen production in my body for 5 to 10 years, most likely 10. The drug could be tamoxifen, or something else if my body doesn't tolerate tamoxifen well. The thing that's weird about all of this is I can't seem to think about it. I draw a blank.

You see, I can't see the future right now. For example, people ask me about my plans for growing out my hair, because they look at me and see that my hair has grown. I never look at myself in the mirror or look at my hair so I don't know what it's doing. I don't know about the hair - I literally don't think about it or care - this experience of having cancer has stripped hair style thoughts away. I don't know how long it is. I don't know what color it is. I don't know if it's straight or wavy. I can't see the hair future - I draw a blank. So I have no plan whatsoever to do with my hair in any way, shape, form, bob, long, short, butch short, mohawk, Little House on the Prairie long, Scarlett Johansson waves, nada, zip zilch, el-nothingo. 

It's not that I don't want to think about my hair or that I don't think I have a future, no, that's not it at all. I'm confident that I have a future, but I'm not living in it.  All I can see is now and maybe a few weeks out. It's not really negative or anything - it's just the way my mind is now. This kind of sounds Buddhist or Zen, but no, I wouldn't equate myself with being on that higher level or anything, it's just a natural shift that has occurred in my thinking. Or lack thereof.

For example if you want to go out to lunch with me or something I can talk to you about today or tomorrow but not much further out than that. I don't want to make any plans. I'm content to just be here minute by minute, hour by hour, day by day mostly. Or actually I'm not content some of the time, but I just am here. Come see me here now.

I've had 16 regular radiation appointments. Today I had my first of the four "boost" sessions today. After those my 20 sessions will be done they say. I don't see that. 

The boost sessions mean that the machine is calibrated to deliver radiation to a much smaller targeted area, with a stronger zap to go to a specific mapped area inside the breast, which is where the tumor originally grew. I had two tumors, so there are two mapped areas. 

This is a special extra boost to supposedly help kill any remaining cancer cells more effectively. Sounds good. I'm not sure what it means. I'm drawing a blank.

Here is what is different and special about the four boost sessions I am getting:

1. Today was boost one. The technicians set up the machine and it shone light down on me from through its little metal teeth that opened specifically into the shape that they would be beaming into me. They used that silhouetted light shape shining down on to my breast to mark where the radiation would go in. They marked it by drawing all around the edges of the light lines shining down on me from god oops I mean machine, with black sharpies, adding a few X marks, and finally finishing their Amy Boob Art Project with a little round clear plastic sticker with its own X written on it. I asked why they did this - surely a multi million dollar machine doesn't need look at a magic marker to know where to go (I hope!). They said they did it for documentation. I suppose this means that if I need radiation later in the future (remember the future is a place about which I draw a blank) they'll be able to go back and look at these pictures to determine where I had it in the past.

2. Once they got that all set up I got blasted twice. Once from straight up above me going straight down into my body, which is the opposite philosophy of the radiation I had been getting (which was breast-skimming for the express purpose of NOT shooting straight in to the body). The second blast is from the side of my body straight into my body, also the opposite philosophy - that philosophy being the idea of trying to miss the major organs in me. Seemed odd to throw out that strategy now. I asked them about why the radiation beams were now going straight into my body perpendicularly, after I'd heard so much about how important it was to go in at extreme angles in order to just hit the blob on top of my chest but without going inside of my chest? I was alarmed to think about the radiation going straight in where my heart and lungs are, which is not good. She assured me that they "try to make it so that it wasn't too deep..." Hmmmmm... They program it so that the x-rays wouldn't go in "too far" or harm me too much. This maybe feel a little bit better. I think. I'm drawing a blank.

3. And in a little fun moment of low-tech retro-land, they then took a little wet washcloth and cut it into a little 2 inch strip and taped it to my scar where my four lumpectomies were. My sliced upon part. I asked about this of course, being the curious patient that I am. (Do they hate me or love me?). She said this would help to "draw the radiation up to my skin." I didn't believe her so I asked for further information. She then said that this wet piece of terrycloth sort of acted like an extra layer or two of skin - I'm still not quite sure what that means, but what I think it means is that the extra thickness of it (it = wet terry cloth = fooling the machine cuz my skin is like a wet washrag? Ok I'll buy that) on the outside of my body would help the radiation slow down more quickly as it was going in so that the rays could focus on the scar area outside more effectively. In other words my tough and gnarly scars are about to get the fuck zapped out of them. That's what I got out of it.

Don't worry the above photo is rated G - that X and round thing is just a sticker.

A curiosity: no matter how much you ask about this stuff ahead of time, no one can ever give you any answers that are very accurate, and you will not know what's happening until you are there and it's actually happening. Or, unless you read my blog I suppose.

Another curiosity: we do not treat human beings as human beings when we treat them for medical stuff. We treat them like little files - a small Manila vanilla file of one symptom ("sprained ankle" or "sore throat" or "boils on the buttocks") or disease/illness ("mumps" or "multiple sclerosis" or "prostate cancer" or "swine flu") or condition ("recurring anxiety" or "auto-immune dis function" or "insomnia" or "irritable bowel" or "horrible personality") but fail to see how these are, surely, interwoven and connected.

The medical community of United States of America in the year 2014, thinks of me as a "cancer patient." So when a test showed cancer in a breast I was sent to a "cancer doctor." But wait - there's more. Actually they did not send me to a cancer doctor - I went to three highly trained specialists:

1. A medical oncologist - the person who gives chemicals -  highly specialized, highly trained, brilliant, expert in chemicals that kill rapidly dividing cells

2. A surgeon - the person who cuts and removes cancerous tissue - highly specialized, highly trained, brilliant, expert in surgical techniques 

2. A radiation oncologist -  highly specialized, highly trained, brilliant, expert in the use of x-rays to kill cancer cells

However - I am not only composed of rapidly dividing cells, cancerous tissue, and cancer cells. The other 99.43% of my body and 87.59% of my mental state is not being addressed.

And I am not sure if the three experts know me, or each other, very well.

Actually, I am not a "cancer patient," I am a human being. Actually I am the one and only Amy Jeanine Larner Adams, born July 15, 1961. The cancer that I have is just part of a long, almost 53-year-old history of events, experiences, genes, nutrition, fluoride, antibiotics, proclivities, personality, chemicals, accidents, geography, ethnicity, luck, exposure, geography, and ancestry. 

Yet I am sent to different specialists for special things, and each of them only looks at one teeny tiny part of me, like opening a door an inch and analyzing and seeing just an inch wide slit of a person but not noticing anything else about them. 

Why? Why? Why? Why? Why? 

Why? Why? Why? Why? Why? 

Why? Why? Why? Why? Why? 

Why? Why? Why? Why? Why? 

Why? Why? Why? Why? Why? 

I'm drawing a blank.

Why do we treat patients with such a short sighted and narrow view of "your alleged diagnosis" instead of as a holistic, complete organism? No, make that set of millions and billions of organisms held together in this thing we call a human? 

I have experienced strep throat, childbirth, depression, dog bites, pleurisy, heart surgery, pneumonia, chickenpox, sunburn, breast cancer, hangovers, anxiety, trips, cuts, bites, stomach flu, anxiety, fractured wrist, ripped knee ligaments, hangnails, inflammation, sinus drip, plaque, dandruff, surgery for a fatty tumor on my knee, a sprained ankle, happiness, burns, drunkeness, sloth, heartbreak, cuts and bruises, car accidents, freak outs, lice, colonoscopies, pelvic exams, tooth extractions, stitches, drugs, braces, migraine headaches, bitten fingernails, fungus in my big toenail, acne, thrush, constipation, sprained elbows, yeast infections, sore joints, irregular periods, hot flashes, anemia, low blood sugar, cramps, backaches, crackling joints, low blood pressure, extreme silliness, dry mouth, vaccines, medications, an avalanche of ibuprofen, greasy hair, myopia (both literal and figurative), plus the average bumps and bruises and colds and sores of life. And much more. Are not all of these things related to each other? In the plantation of my body, filled with millions and millions of bacteria and microorganisms that all work together to make all of my departments function? 

But wait. Before you think I'm throwing all doctors under the bus let me tell you. I know. I know why we function in this way medically. Because. The human body is so complex that we just can't master it. I do believe that what we know, as humans, as the best of our medical minds know - is but a fraction of the universe of complexity of the human body. And I forgive us, I forgive the doctors who are TRYING. 

I forgive you.

I forgive you.

I forgive you.

But still I feel that we can not treat a person effectively until we can understand the interwoven parts of the person better.

In the future, I think we will figure this out. Each person will have a doctor that knows you as a holistic organism, filled with lots of other organisms that all relate to each other. This doctor will take into account your history, your genetic makeup, and how everything in your body works together, how your immune system is affected by the things that you eat or take and the experiences you have, as well as the diseases and surgeries and events of your life. It's all related. It'll be grand then. Not in my life. Future people - enjoy! 

I know were starting to think this way medically, there are so many fascinating books out there all about  talk about diet and yoga and meditation and happiness and depression and how of these things affect every other thing, even life-threatening diseases like cancer. Future people - enjoy!

Yet it's hardly really in practice yet and I find this upsetting. I've been going to hell in a hand-basket over here in the last couple weeks alone, with this weird auto immune system flareup of pleurisy pain that is confounding to my doctors. I have different doctors and nurses at the same place tell me completely opposite things and it's clear to me that they're not talking to each other or really understanding me as a patient. I don't really fault them and I'm not really mad, I think our system doesn't work very well. Literally the other day one person told me to call my general practitioner, and in the same SECOND my phone beeped and another person there told me to get a prescription and start taking steroids. What did I do? Do you know?

I'm drawing a blank.

LOVE ME OR HATE ME

By Lady Sovereign 

(Come over if you want me to play this awesome song for you)

Lyrics:

Yeah,

It's officially the biggest midget in the game.

I dunno.

Make way for the S.O.V.

Love me or hate me, it's still an obsession.

Love me or hate me, that is the question.

If you love me then thank you!

If you hate me then fuck you!

I'm fat, I need a diet.

No, in fact I'm just here lying

And I ain't got the biggest breast-s-s, but I write all the best disses.

I got hairy armpits, but I don't walk around like this.

I wear a big baggy t-shirt that hides that nasty shit.

Ugh!

Never had my nails done.

Bite them down until they're numb.

I'm the one with the non-existent bum,

Now I don't really give a....Ugh!

I'm missing my shepherd's pie

Like a high maintenance chick missin' her diamonds.

I'm missin' my clippers lighters.

Now bow down to your royal highness.

No! I don't own a corgi.

Had the hamster - it died 'cause I ignored it.

Go on then, go on report me,

I'm English, try and deport me!

Love me or hate me, it's still an obsession.

Love me or hate me, that is the question.

If you love me then thank you!

If you hate me then fuck you!

I'm that funky little monkey with the tiniest ears.

I don't like drinking fancy champy,

I'll stick wit Heineken beers.

Whoops, might burp in ya face,

A little unlady-like,

What can I say?

Well oh gosh I'm not posh, me, I wear odd socks.

I do what I'm doing, yeah!

So everybody's entitled to opinions,

I open my mouth and shit I got millions.

I'm the middle kid, the riddle kid,

I'll make you giggle till your sick

Cause my nose jiggles while I spit.

Yeah I do have some stories

And its true I want all the glory.

Go on then, come on support me,

I'm English, try and deport me!

Love me or hate me, it's still an obsession.

Love me or hate me, that is the question.

If you love me then thank you!

If you hate me then fuck you!

Love me or hate me

Love me or hate me

So I can't dance and I really can't sing.

I can only do one thing,

And that's be Lady Sovereign!

So I can't dance and I really can't sing.

I can only do one thing,

And that's be Lady Sovereign!