TAMOXIFEN--A Prayer for My New Fabulous Friend

So.  Last night marked the first date with Tamoxifen. After this lates recoccurence, I did some souls searching. It looked like this:: Maybe the doctor's aren't so evil and all the success they have had with this disease was not made up and I would be wise to listen to them, because there is a lump sitting in my breast and I tried the other way and it seems like nothing really happened. Well, I shouldn't say nothing, because my bloodwork is fantastico. And THAT is not nothing.

So I got the prescription and now have an orange and white bottle sitting in with all my other supplements. Last night I took one little white pill out and cradled it in my palm. Its so small and looks so harmless. In my imagination's eye I looked down into that pill and imagined all the molecules and chemistry and atoms and whatever it is that's in there all configured in just the right way to help me. I then took my breath and blew ever so gentley into the pill with my VERY BEST intentions and said thank you to the scientists who made it. Who cares how much money this drug is making, and all the politics around it, maybe this little pill deep in its heart wanted to help me. It was going in to do the job right. Prevent those cells from growing! Or give me ridiculous side effects which I regret for the rest of my life, never find a man or settle down, have zero retirement plan, and have such deep crow's feet in my 50's that I look like a witch and my only friends will be cats. Stray cats who meow alot. Named Raven. 

So Miss Tamoxifen, and this pill is definitely a She with a name like Tamox--which rhymes with Mox as in Moxie, you are my hope for a successful and wonderful life. Show my your Moxie, do your thing to bind to the cells before the estrogen can and stop these silly Cancer cells from growing.  Send them to Cancer heaven where they will have a better time anyway. Shrink my little 1.7cm tumor down to nothing so that when they do go in there to clean it out, there will be NOTHING there.

Thanks Tamoxifen.
Oh yeah and don't give me hot flashes or any of that big ugly list they handed to me....

What Breast Cancer IS and What It IS NOT

I wrote this little diddy while I sat waiting for the doctor....A mammogram and one doctor's appointment took 4.5 hours. Yes, thats right.....4.5 hours.....

Lets talk about what Breast Cancer is NOT. Its not a fucking pink ribbon. Sorry Susan Komen, you might like it like that and also like other things like pulling your funds from Planned Parenthood for Breast Screenings in support of Pro-Life pressure, but Pink Ribbons are not what I am experiencing as things push forward. Its  nice tho, to see them on doctors lapels, I appreciate the gesture. Maybe one day I will tie a bunch thru my hair, long pink silk things with little breasts on them, and run screaming thru the Breast Center's hallways, saying "Yay! I have Breast Cancer! Whoopeeeeeee!" And high five all the doctors in support.

But for now, I am just going to throw up when I see that pink ribbon on all these fucking advertisements when I know how much money people are making off of pitying women and their sad little breasts. OUch. I  know, its a bit harsh, but I have Breast Cancer, I can say what I want, because you have to be nice to me and think "she is probably going thru alot". Anyway, you know you see those pink ribbons on things like yogurt and crackers and granola bars, soon we are going to see it on a bottles of Gin and cigarettes. 

Breast Cancer is NOT a smiley bald woman sitting with her hand on the shoulder of another smiley bald woman who has a very pretty scarf on her head.  You know the ones I am talking about, where they are turned towards each other, but also out to face us, smiling together as if they triumphed or just recieved a plaque or were about to give an inspirational talk. Lets just get that one straight.  I don't see those women much except for in magazines and advertisements. In fact, when I walk into the waiting room for doctor's appointments, I have to say, most women are not smiling very much. They look worried and scared and nervous. When they are bald, its SHOCKING and stunning and Bold, but you dont get a warm feeling in your tummy, like everything is going to be okay and isn't that woman beautiful? You get scared and self absorbed and wonder if that could be you. Sorry, most women are not that excited about going out to buy some scarves for their head, we like our hair and we like it on our heads. There are exceptions. And yes, I DO think many women look HOT as bald ladies, but I personally do NOT want to be one.  I  know, I know, it grows back--Don't tell me things to make me feel better!

What it is, in reality, or at least so far in "my" reality or at least in the reality that I am currently experiencing, what little I can see, and don't you dare think I KNOW what this whole breast cancer thing is about, but one thing I can say it is about is an extreme disconnect from the truest source of life, a dire confusion about the Mother and how she wants to nourish and protect us and a deep isolation from letting her in. This is another topic all together about the entire state of the world, not just women and why we are in the situation that we are currently in. For now I just want to rant a bit about my experience and not have any answers.

What Breast Cancer IS...is:;

Monochrome waiting rooms, fake plants, glossy brochures written in fake soothing copy, and aggravated overworked secretaries who are doing the best they can. Its pictures of flowers framed on walls of oil painted beaches and long sweeping rivers and magazines with thinks like Housekeeping tips and perky ways to tone your butt with recipes for chicken cattiatore and interviews of air brushed celebrities, their lush bosoms falling out of expensive clothing while you sit in a wrinkley pink hospital gown burrowing your mind into something that looks pretty and is trivial.  Yes, I do want to think of 5 ways to please a man in bed so that he stays with me FOREVER before I walk into an office to talk with a married man about how he wants to cut my boob off and therefore safe my life and save the day.

Its taking an out-patient satisfaction survey that the nurse hands to you while you wait, asking you to rate your experience. Its writing " I don't know how to rate this. ( Options are 1-2 Very Poor 3-4 Poor 5-6 Satisfactory 7-8 Very Satisfied 9-10 Excellent. ) Who wants a mammogram where your boobs are smashed between two plates while you grip on to the holding bars for your life and hold your breath waiting for that click of the picture, while you close your eyes and try and beam away the radioactive stuff that may or may not be penetrating that metal sheild you wear across your woman parts below that may or may not be getting blasted by radioactive STUFF,  all of this for pictures that still don't show you everything and that look like a snow storm in the middle of the night, while the woman taking the pictures does her best to be cheerful and not freak you out but you both know none of this is very polite, you topless standing in a room with a stranger while she operates a machine to inform you there is a nasty disease in your soft feminine spot. But if I take that part out and enjoy the pictures in black and white of my boob and the picture of the woman on the wall in charcoal by Picasso who keeps staring at me with her simple eyes both sad and true, ( whoever does the art selection in this place deserves a metal-seriously) I would say 7-8 Very Satisfied. Definitely would come back and again and invite friends and family.  A first rate hospital experience, maybe change up the lighting and add some Muzak to complete the experience. Good Job."  It's write so much you have to turn the page over. You giggle at the thought of the person reading this in Hospital Personel who probably has never recieved a response like this. She will probably call you a cuck-coo and call her co-worker over to be confused and amused by you. But at least you didn't play their games of acting like this is all normal and cheerful and can be rated by some fucking number as if you paid for this experience and those you paid are wanting to "serve you better". Are we at Home Depot?

Breast Cancer is sitting up at night pouring thru google looking for information that doesn't come from cancer.gov or breastcancer.org or healthfacts.info or any other major website that is riddled with consumer ads for drugs and doctors and macaroni and cheese.  Its reading one thing, only to read its opposite only to read nothing only to read horror only to read that if I just eat a bunch of grapes for 40 days and begin to love myself I won't sit in these rooms anymore. Its trying to make up for all the biology and science classes that you passed notes in or skipped, because the words they use in explaining things are some fucking martian language of a tribe called Doctors. Its reading the results of studies that you have no idea how a study is stuctured or anything about research and nobody seems to want to explain it to you and there are no online classes or nite sessions at the Y. Its realizing your doctors do not have time to share with you the inside of their 10 years of study brains to get you to wrap your head around the fact that cells do exist even if you cant see them and that the activity of these cells can put a damper on your plans for the white picket fence and  you should just do the Chemo and shut up and trust them so they can continue their rounds.  Its noticing how polished and clean smelling these doctor's are, with their gold cuff links and italian framed glasses, and silk ties.

So far, thats all I got in this little diddy......a post in progress.....a lead into a realm.....a start of something new.

A Qoute From the Red Book

This is an excerpt from a great little book I am reading called The Red Book...

"Countless are the wise masters who've said that our entire existence, as meaningful and profound as it is, is also probably one big cosmic joke. On us. Legendary comic Charlie Chaplin once said "In the end, everything is a gag." Take a look around your life sometime; it can certainly feel like life is one giant prank. We've all had those surreal moments, like when you're staring down some seriously lofty truths or reeling from some profound personal realizations or listening, reading, or speaking about something so incredibley deep and heavy it would make flowers cry, and then you get this sort of weird existential hiccup. Your lens shifts, your spiritual underpants are pulled down, and some raw part of you is suddenly exposed. The world, you, all of us wrapped up in our super-serious "spirituality" all suddenly appear to be like cute, tiny frozen peas, packed away in the back freezer aisle of the universe's supermarket of possibilities. It hits you like a rubber chicken smacked across your skull; We've only just begun to realize who we are and what this place is made of, and even when we do, we still could be, well, totally wrong.

The author of The Hitchhikers Guide to the Galaxy, the late,great Douglas Adams, wrote, "There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory which states that this has already happened" It can get extremely complicated when you try to make  logical sense of why things are the way they are. Why are you here?  What is the meaning of all of this? Why is there so much love and dazzling beauty in one moment and pain and violence in another? Why do you feel the divine's hot breath one night and a cold vacancy the next? Why are there so many wildly different belief systems to choose from? Why did that particular love end or that tragedy occur? Why do families dysfunction or friendships dissolve or personal beliefs get thrown or cute little puppies die or birds get crushed by cars or cute littel fishies get all eaten up bye-bye, yum-yum fish sticks? I mean what, really, is the point?

Approach spritiuality from a purely analytical standpoint, and I can guarantee that you'll come away with a massive migraine with a spicy side of existential angst. It's your choice. Try and tackle these classic, metaphysical brain twisters that philosophers and theologians have been struggling with for centuries and spend your whole life tying yourself up in infinite knots, or accept the mystery, the divine paradox, let go of trying to figure it all out, and enjoy the endless crazy ride."--Sera Beak

I think this is some wise counsel that made its way all the way from the great book sellers at Amazon today....:) I will take it.

Let it Be.

After so long thinking it was under control....all the supplements.....the Vit C IV's, the Mistletoe Injections, the herbs, the diet, the thousands of dollars....all of it.....its back.....

Another lump.

If it hadn't been for my doctor finding me on linked in (yup that site creates miracles) and convincing me to come in and see him for a follow up check, I might not have found it. I was so convinced I would be fine, as I was saying the words, "I will be fine", he said "I feel something".

Boom. A small needle biopsy moving on to the big needle biopsy and on into a pathology that said CANCER.

Sigh. Shake angry fist at God. Collapse into tears. Meditate all morning, praying for guidance. 

And just a week before I was going to Costa Rica.....planning my life and workshops and classes and....

Life made other plans, again.

Okay, the pity party is over. I cancelled that act this morning. Now its action time and being logical. So much foot work to this journey, emails, phone calls, care taking, eating, ordering, researching, its just a full time job. Now I am trying to set up my room to be a sanctuary because it seems I will be spending more time here in these tiny walls. Light the candles paint the walls hang up the sacred stuff, make it pretty. I never fully moved in because I honestly didnt think I would be staying here that long, thank god for girlfriends and homes.

Now, to focus on this little lump in my upper left boob, looking so dark on the sonnegram, being fed by god knows what, being heard by who knows how....what a mess. Or is it?

I vascillate between the pity party and this strange sense of wanting to tackle a healing project. I am made for this stuff.....I have passed thru worse than this in life upon life, famine, torture, death, disease, abortion, this cancer stuff is really just grist for the mill. Except when the demons come out....like masectomy, hair loss, infertility....why does God want to threaten me with my female parts? Who does he think he is to play these games with me?  It is not FAIR nor RIGHT nor what is SUPPOSED To happen....didnt he read the script? He is directing the WRONG movie...somebody please tell him so he can pencil back in boobs and long flowing hair and lovely children suckling from my very real and unsagging boobs. (I threw the unsagging in there as a payback)

Of course now, when I am upset with life, God becomes a Man and not the Goddess.....Goddess wouldn't do this, only a strict Man who thinks I have done wrong and I still need to be punished. And not punished in that titillating playful way, like really punished. Like hack of your boobs and steal your ovaries and make you damaged goods that will never find a nice man and settle down...although I never wanted to settle down but  now suddenly it seems very nice, especially with that white picket fence....No you WONT!! I want to scream.......No you wont take my fairy tale away from me.

And who knows...really. Where is this leading? Who knows. Maybe God doesn't even know, maybe he is as suprised as I am. Maybe.  Maybe God doesn't care how I feel about it, maybe its just supposed to happen for reasons I may never know. Its just how the atoms and molecules were split at my conception and maybe I give God too much credit. Maybe he is just bumbling along just like me, forgetting to put on deodorant and call the Tax Lady back. Maybe.

I am so sick of this God business and this Karma business and anything that has to do with me finding ways that I fucked up in my life and therefore created this cancer and am supposed to not get mad at anyone or anything because somewhere I called it to me so how can I blame anyone. Really? Fuck you. Really. I think this "reasoning" was made up by people who are afraid to face that fact that is could happen to them and there is no "reason" that can somehow be controlled so that you can feel better about not having it or ever getting it because you are doing all the "right" things that will make it so you don't get it. I am throwing that guilt trip out the window of the 85th floor of the high rise called "Let it Be". The Beatles can now be God, they make more sense anyway. Was John Lennon a bad guy because somebody shot him? Or Martin Luther King? Yeah those theories don't really hold when you look at the bad shit that happens to good people that also seem somehow touched by the hand of God.


For now, I have cancer because in some strange reality seemingly far from this one, but actually right along side it, it makes sense. Because, whatever fortitude that made me write this post had to come up and thru and out and Life (fuck God) wanted it to be that way because it is more interesting than sitting in a suburban house peeling apples. Because, some screwey people decided it would be great to fuck with the environment and put weird things in food, and poison the waters, and pollute the air because well, in a strange twisted way it made them money that they then thought they would do good things with but never got around too, because they were out making more money. Because I am not so important as I think I am and because life just happens while you are busy making other plans.

To be continued.

Revisit

I wake up one morning from a dream, that I am loosing my hair. That there are bald spots on my head, big gaping holes all over my head where there is no hair. Absolutely no hair. I am wondering in the dream how they got there. It is not a terrifying dream. In it, it feels like I am more wondering how they got there, knowing they will most likely grow back, but nonetheless, there are bald spots on my head....so it isnt the best either.

The next day after this dream, I speak with my father, as I walk on the very cold afternoon sidewalk in chelsea.  He starts to tell me of yet another friend that did the chemo and "she's fine now". I launch into my speech that I must have said a zillion times, about the cancer industry and all the ways I am not going to be a part of it. I feel like I am explaining this to myself because I have to convince myself I am not afraid. Or that I am not secretly wondering if I made the right choice. Or in the back of mind, thinking, well maybe I should just try it.  My father concludes my speech with a simple "well I would just have to disagree with you". And then "Good luck". Ugh. That feels like a sharp nail in my side....good luck? What about "we support you honey" or "I know you can do this". Good Luck?

My next book will be "A Parent's Guide to Parenting Children That Are Now Adults who Make Cancer Choices."  Chapter 1:: Good luck should never be said with finality. Ever.

The thing is there is always that little bit of doubt always lurking in the back of my mind. I mean isn't that normal? The point is not to play into it, right? I don't know. Its all  a big mystery, truly, but I certainly know, telling your kid Good Luck, must be chosen in the right context, tone and situation.

The Scan

So, now that I have gone alternative. Am I alternative? I guess that's what I am. Now that I have gone that way, I am forced to ask the question, yes, but how am I "checking" to see if it's "working"?  Well. Good question. Awhile back at the start of this whole journey my lovely little arrogant and brilliant blonde surgeon had ordered me a full Pet Scan. You know the kind where they zoom over your body and check for any "hot spots", if anything lights up, well that could be where more cancer "may" have spread. It's a $5,000 test that insurance somehow managed to get out of paying. Yup folks, even though I had a lump of cancer sitting in my breast, they didn't think that checking the rest of my body was really a priority. And according to some silly cancer criteria made by the national institute of cancer people who wear stiff neck ties, the scan was not considered necessary.

So let me get this correct Stiff Cancer People of my Imagination, you are freaking me out or rather into doing chemotherapy because "God forbid it spreads"(they all say this expression, it must be in the handbook) but you don't want to check to see if it really has?  The logic on this one is beyond my meager mind, forgive me. I don't wear neck ties. Even though my doctor ordered it. Hmmm.

Finally after a few months, I thought, damn, you know I would just like to sleep better at night, knowing I did everything I could to make sure that I checked all the possibilities. So I called up my trusty Nurse Denise, who works along side the arrogant and brilliant english surgeon, born and raised in Brooklyn, sweet as pie lady, who I have chatted with very honestly on many occasions. Denise cares. You can feel it. And the brooklyn accent just makes the whole experience even better. Denise, got back to me right away, only to tell me the doctor was on vacation and she had to wait till he got back. Doctors take vacations?

When she did get back to me, she had this to say:: "Would it change your treatment choices? (i.e would you finally just DO the chemotherapy) Because it doesn't make any sense to do the scan dear, because even if you find something, it will be a stage 4 and there would be nothing we could do for you. At that point it would be too far gone. The doctor just wants you to be aware that just because you do the scan it doesn't necessarily give you a clean bill of health. You could do another one in a month and find something, there is just no way of knowing.

So what you are telling me is that I shouldn't do the scan??? I should just sit around and HOPE that it hasn't spread and save my money? Because even if you find something there is nothing you can do so ignorance is rather a nice way out of this mess?  "Isn't it better to know" I ask Denise, "I mean if something is there, isn't it advisable that I would know about it at the very least??  Is this new logic in the medical world, or has sticking your head in the sand become the preferred way to treat people....."Dont worry about it, get back to your job and life, best we just let nature run its course. As if a stage 4 is incurable, even if it was what I had, do you not read the countless cases of spontaneous healings, alternative healings with stage 4 and worse? No, I know you don't but I do. So fuck, do I spend $5,000 on a scan that is only going to tell me that I have such an advanced case of cancer the medical world just gives up on you, and which may tell me things are great today but in a month it all could change and I will have to be doing $5,000 scans the rest of my life, severely preventing that much desired trip to Costa Rica, India and Brazil and that tan that NYC has proved impossible to attain.

"Well maybe you just want to do the chemotherapy so you know you really got everything"....This is what is implied....We are happy to order the scan for you, but we want to further scare you that whatever it finds either won't make a difference to what we can do for you, or won't be the full picture a month from now, so maybe if we tell you this, you will finally aquiesce to the chemo and get this scan thing out of your head and we can feel like we did our jobs. Maybe they are right, maybe I should just stick my arm out for one round of the chemo, just so THEY can sleep better at night.  Save my $$ and go to India and Brazil and stop being so difficult. Well, at least more tan....

Day #1 How the Art and Discipline Actually Played Out

Everything I am  noticing right now is about how we do or don't go against ourselves. I watch how often I am making decisions out of guilt or what other people will think or what I think is expected of me. It is often so subtle, I don't notice it until after I have made the decision and am wondering to myself "how did I get here, in this uncomfortable spot?" Already I am here for a day and things are expected of me, things that I don't particularly want to do, and not even asked if I want to do them. When I ask to please be told if there are things on the agenda that I am expected at because there are things that I need to do to take care of myself, I am told, the agenda is the priority. I will have plenty of time to do the things that I need to do. This boils my blood. Because its a write off. It implies, oh you and all the things you need to do for YOU....I can feel it. And yet, no one seems to take any interest in how I am going about taking care of myself or if I am doing it adequately. Then I wonder why I come home in the first place and why I am breaking my bank to be here. So round and round we go, where we stop, nobody knows. But I do know that the more I sink into the power, wisdom, creativity, juiciness and joy, the more things in this life have a nice way of working out and aligning themselves.  For now, I have let go that this birth family can really offer that or support that, so I am doing what I have to do to make it through this visit.

Yesterday, I managed to get all the supplements in, have a super smoothie and eat pretty raw all day. I definitely need to eat more green things. I really feel in the past month with traveling, the holidays, my birthday, etc, I kind of fell down on the food side of things and on taking care of myself in general. I would like to get back on that horse in a serious way. It does begin to play into my control issues, especially around food, and all the anorexia stuff comes up, yes if I can control the food I can control my life is the subtle belief....If I can control my food, I can control my life.  This needs to be looked at over and over again.  I also have an eating for comfort gene, and when I am stressed I want to eat things that make me feel comforted. Forget about when I am PMS, then I want to eat anything in sight.  I did go to the organic store and buy a bunch of green vegetables to juice, frozen berries for smoothies and various things like coconut water and date rolls and almond butter. Those make for incredible snacks when the PMS is kicking in. But my mother has a nice candy dish on the dining room table of godiva chocolates, does she really have to put them there? I have only eaten one and thats the end of what I will eat. I can feel the discipline warrior in me that wants to lay down the law. And is fucking pissed that it doesn't seem that anyone in this supposed family supports me. In fact I find it incredibly ironic when I go out with friends who know what I am dealing with, that keep offering me sweets and things I obviously don't eat. Hello?

The rest of the day, I had planned to go to the gym, but at the last minute my girlfriend had offered a ticket to the Nutcracker, our towns production with all the kids in various outfits jumping around the stage and saying their lines with gusto. It was cute. I had performed on that stage, in school plays and in the nutcracker myself. There were memories. At the art center where it was I saw the courtyard where I had my first boy/girl dance and felt marijuana for the first time. (Will never forget that first moment of liberation) And then the room where I had taken ballet. But I couldn't help noticing that the kids looked like they were trying to be adults, that it seemed that they were putting on a show to please us. Smiling fakely and prancing around in this adult choreography. I hate to be so dark, but, it was kind of creepy in a way. A good metaphor for what I am going thru here, all the expectations society puts on us to be a certain way, to perform, to reach, everything Tyohar talks about, its like I could see thru the veil of the society for a minute and I couldn't really laugh and cheer about it. I want to see kids natural and pure and true to themselves, not aiming to keep up with everyone else and become some version of a person on TV. Ugh. I decided then and there, that my kids would never go to "regular" school. And I would never ask them to smile and wave or curtsy in any kind of ballerina skirt unless they really wanted to.  I did enjoy however, watching the kids come off the stage, looking for their parents without hiding it and getting so excited from seeing somebody they knew in the audience. Their little faces lighting up so pure and natural at the joy of seeing their families.

Later that night, still unable to fully meet my mother with an open heart, I leave for the grocery and the drug store, only to find I locked my keys in the car at the drugstore. I calmly called her and told her the news. I was suprised she handled it so well and got the neighbor to drive her over with the spare set. It softened things for us somehow, making me realize she can be cool about certain things and not raise a fuss.  Then later she said she was glad it happened because now she knows where the spare set is....I felt her trying to make good of a situation, knowing I probably was beating myself up about it, which I was for a quick minute. "God I am so spaced out, I need to be more in my body". Its funny how those supposed mistakes serve a broader picture...it did soften things, it forced me a bit out of my shell towards her. A bit. Miracles only happen in inches I suppose...And Until tomorrow.....again and again.