You are a wreck

So I went to the endo doctor....

I had The Barren come with me, well, because it was a male doctor and as sexist as that sounds often times when I have visited a male doctor they talk down to me unless The Barren is present.

It sucks and is sad, but true.

So I brought back-up

Also, I had MASSIVE white coat and I wanted a second set of ears to hear what my brain dropped with its high screeching sound.

I was sweating and anxious and although my clots had stopped on Monday, I was still spotting.

The doctor came into the exam room like a cowboy on a bulldozer.

Sat down in front of me with my folder and said:

"You are peri-menopausal.

that is why you are bleeding like this."

"We've met before, but you were asleep" (creepy)

He assisted on my ovarian cystectomy and stage four endo confirmation.

" yep, you are total mess, everything is just all mucked up in there."

He was trying to make light of things I think...but it came across a little like a used car salesman

He told me that when I got tired of bleeding I should consider a D&C or Uterine Ablation or both.

But first, 

" We need to do an endometrial biopsy, to confirm that you don't have uterine cancer. I don't think you do, but it is important to confirm that.

I have my nurse practitioners do them because I don't like to hurt people and they hurt. Because I have never had any children, my cervical opening is small or totally closed and they might not be able to do the biopsy, so if that is the case then they would do it with a D&C""

I saw The Barren go pale when the doctor described the process 

and I think I left my body at that moment.

He suggested that I double up on my BC pill to up the hormone and if it works then we can switch to another pill and just take them back to back.

Oh, and you can only take the pill until you are 50 so you only have a little bit of time left on that.

then you are considered Menopausal and you shouldn't be on the pill anymore.

I told him I was most afraid of having to have a hysterectomy and he told me that he had ZERO desire to do one, that he doesn't even have it on the list of options....unless needed.like uterine cancer.

That was a relief among the land mines.

He also said that caffeine or alcohol are not triggers for endo and that I should be drinking champagne whenever I want and enjoying my cup of tea in the morning.

I left the office with a biopsy appointment, with a nurse practitioner that was versed in the procedure of difficult subjects, and the lady at the front desk said she would ask if a should take some kind of medicine ahead of the procedure to help make it easier for us both...but it wasn't an anti-anxiety drug.

I left the appointment feeling like I had been run over by a mack truck!

I was dizzy and shaking and confused and so very sad.

I spoke to a pharmacist yesterday that confirmed that doubling up on the BC pill was a good option and if the spotting stopped then get a new prescription with that dose and take three 28 day packs back to back. 28 day packs have a wider range of dosages of hormone than the 91day generics I take.

I started last night and aside from some nausea this morning, I feel pretty alright and the spotting seems to be stopping too! 

I did yoga yesterday and today...that helped A LOT.

I am scared of the biopsy, but keep trying to focus on it being a 10-15 minute 

procedure and that the pain will be temporary.

The Barren is taking me to and from the appointment that day.

I am so done with this bullshit

I am done with doctors

I am done with the sadness

I am done with painful procedures

I am done with feeling so overwhelmed

but something somewhere in me won't let me totally give up and give in

I still have some dim flame of hope that this will be it, the last of it for a long spell 

The Monster

I have an appointment to see a gyno on Wednesday.

I have not stopped bleeding and throwing large clots since Tuesday. 

(it is Saturday night)

When I asked my doctors office for advice, they said:

  you are already on the pill, there is nothing more we can do.

After feeling set afloat and abandoned...

I started calling gyno offices to see who took my insurance...and booked an appointment to see someone new.

When I called on Tuesday in shock at what appeared to be another miscarriage, I was immediately dismissed and told it was impossible on the pill.

Feeling run over and emotionally hurt as well as terrified by what was happening to my body...

I requested a change in BC pill as I had been spotting since August.

It was requested and after some hunting down, I got it ordered and filled.

I am bleeding

a lot

I fear and expect that this is The Monster that has been laying in wait for all these years.

The same monster that I have managed since my surgery in 2012. 

The Monster that has been quiet until now....allowing me to be me and feel like I had some control.

I don't know what shifted back in July to start the spotting

and then the the bleeding in August

that didn't stop until the end of the month

and then the spotting to begin again in October and

here I am now entering my third week of bleeding.

I have no pain...so that makes it all the more creepy.

This Monster lulls me into thinking all is fine but, has me in the bathroom every three or so hours.

I have had to stop yoga, as I tried to practice this week and got so dizzy and nauseous that I had to stop multiple times.

The Monster makes me think am covered and then leaks out of the body and into my clothes at work.

The Monster makes me think I can do normal tasks, but then when I attempt to begin, I am unplugged and need to sleep.

I am taking iron to try and build amour to protect myself...

drinking green juices to get even more iron

but every few hours I am drained of my efforts.

I do hope this doctor can be an ally

help me save my uterus from The Monster...

until then I take my BC pills and iron supplements and hope that my shield is strong enough to protect me from collapsing.

Summertime Rolls

I am in this photo, right there with my butt up in the air

This is the Saturday morning class I love to take...

the teacher places a COLD washcloth's on each persons face afterwards and it is a slice of heaven!

it is sometimes a struggle to get there because it ends half an hour after farmers market starts and if you are a regular farmers market goer, you know the best stuff is right when they open...so it is a practice of letting shit go and enjoying being at class, then enjoying the pace of the market when I arrive afterwards. I am also not one of those ladies that 

loves to wear her yoga clothes to do errands and stuff...

so the looks from the farmers while I try and hide a camel toe or my body odor is something too.
I pretend to be blissfully unaware of the stares...

The summer is passing and it seems that the activity I am most often partaking in is sweating...

sweat overnight, wake up and go to yoga and sweat, come home shower and try to not sweat (unsuccessful at that still) then sweat while cooking dinner and cleaning up, evening shower
 and repeat

it probably doesn't help that most of my state is on fire and there has been heat wave after heat wave....so I am not sure if this is a peri-menopausal thing or simply summer.

I am gonna say it is summer because the other option sux!

We have watched friends go on vacations, kids go to summer camp,
and we have even been host to a couple visitors.

Alas, we have not escaped.

I was told that my work was taking a few days off to spend time with family and I got very excited at the idea of not having to commute for a while week...but they shortened the vaca and it fell on the days I am normally not there so no real vacation for me.

I am doing my best to make it productive none the less

but...I got my period and now I am either sweat sleeping or trying to not eat everything in the house.

Happy summer vacation!

 I am still trying....I canceled yoga for myself this week...

it is good to rest every now and then...and I think I need it, plus if I am sweating all day and my uterus is a battleground why not sit back and watch the show.
I don't need to prove to myself that I can still do my thing...
my newly built muscles are not going to disappear overnight.
It will all be alright.

It is summertime, eat some watermelon...
sleep a little later when you can, go for a drive somewhere
collect a few interesting things to remember this time, take some photos.
I mean isn't that what Summer Vacation use to be?!

Transitions

*** talking about pregnancy ***

A dear woman whom I have known for years just announced that she was pregnant. She waited until she was 5 months along before making a photo thing on social media.

This dear woman has been through the gamut of things to get here and it is really no small feat.

I first was introduced to her through another woman who asked me if my stomach was swollen from my cysts or fibroids...

The new mom to be had a large fibroid eventually removed and then for years later battled earth shattering pain with every period and post every surgery.

She got a really fantastic job, got engaged and bought a home...all while trying time and time again, almost every treatment under the sun to get pregnant....

today was the announcement that she is indeed carrying a child.

I read the news this morning and was happy for her.

Like she made the swim across the crocodile infested waters and crawled up the shore on the other side bruised and battered but successful! 

If the mantra for motherhood is that you need to have

" Sacrificed yourself, via pain and determination and drive. 

this woman  has checked all those " she deserves" to be a mother boxes.

I know this was all she wanted and will be amazing at tackling all the new unknowns coming her way with grace and humor.

While eating breakfast with The Barren this morning I told him, that it is becoming a testament to who can afford the trials gets the kid. The industry has boomed since we were trying and although we opted to not invite the "making " of a child, it appears that that is what is needed in all these newest cases; or that is what we are given the impression.

When the doctor finally confirmed my endo, she said that we would need A LOT of help to get pregnant if we still were considering that route.

We had come to terms with where our line was long ago, 

but I am not going to lie and say that that quiet little voice did not whisper into my ear this morning

  " maybe if you had...., if you would have...."

I am glad I made extra baby gifts when preparing last weeks shower delivery.

I don't need to spend the day making more things...they are made and simply need to be packed up and mailed off.

I also said to The Barren this morning:

" I am no longer there any more, I am not sure I could fair the battle again. I mean how many times do you have to be kicked before you decide you don't like being kicked?!"

The Barren responded "once"
I simply smiled and said , well if you are lucky you realize that... it took me a bit longer.

Sitting and thinking

I have been doing a lot of thinking recently.

Some days it manifests as napping, or seated meditation or wall staring. 

Regardless of its form, I have been doing a lot of reflecting.

I think my rant (previous post) got under my skin...

and seeing it there made me realize I was upset over things that I really don't have space for.

Nor, do I want to have space for...

As I have been aging away from baby-making years, 

I find that the first few years (10 or so) were beyond comprehension painful.

I found depths of sadness I never knew existed.

I almost slipped forever into those places, never to return.

I will never forget those times, although they are years away, they are very close still.

I am thankful for that minuscule/tiny spark in me that said to keep fighting...

keep being a badass, a noisemaker, a warrior.

As I am much farther down that path, 

I am thankful for my bodies ability to heal and recover 

and find new ways to make me fall in love with it again.

I can be okay with turning away from the baby oogling and cooing.

I am okay smiling at toddlers as they give me deer in headlight stares from shopping carts.

I am okay not being Okay with something one day and totally fine with it another.

I am giving myself permission to listen if I want and 

walk away if it don't feel connected with talk of children. 

This last month was endometriosis awareness month

and there was a big campaign on Instagram about it...

people declaring they were or someone they cared about was 1 in 10

people dealing with Endo.

One of the questions asked of the community was:

What gift has your Endo diagnosis given you?

I engaged and said:

 That after my stage 4 diagnosis, I was freed of guilt.

I realized that my infertility reflected nothing I had done wrong. 

I had done nothing wrong

I am practicing in a new yoga studio these days and have pumped up my practice to daily. 

This new studio is closer to home and has a lot of different kinds of classes.

One I take twice a week has been teaching me real meditation skills and I have already found them to be reflecting in my daily routines.*

This last weekend I spent two days cooking for Passover.

I made everything from scratch and we hosted my parents, a new tradition for us.

*The Barren mentioned that I was quite calm, and not frantic like I normally am.

We started this tradition because my mother would be working her tail off of days and when the family came for dinner she never sat and enjoyed the meal herself...for like 45+ years! 

so I make her meal and she and my father sit and enjoy the meal without chaos and distractions and have conversations with us.

This year, I did all the cooking and served a super homemade meal...

My father was not impressed

He didn't like most of what I made and told me so.

*I listened and heard him and sat in those critiques

After they left, I quietly washed dishes and sat down.

I overslept the alarm for class the next morning....

When I was finally awake, The Barren asked if I was alright...

I had been standing for the last two days, and it made sense that I was tired.

I told him I felt hurt that my efforts to impress my father made no difference to my father....

but I understood that I was seeking validation for something I wanted to do.

He not liking the food was his thing.

*Me feeling hurt that he didn't like the food was mine;

I needed to focus on the fact that I enjoyed making the food, 

and thinking of family that had made it before me.

I had no space or desire for the negative places I went

I was more aware of myself now  

I am becoming more aware of who I am now...

and for that I am thankful

Happy Birthday Lefty!

5 years ago I took a test that saved my ovary!

I celebrate that day as a new birthday for my ovary ever since.

Today is my left ovaries birthday.

I have had several new cycles with her and she has not decided to grow anything new!

I am thankful for that 

Here is to lefty

formally Quasimodo

I am looking to celebrate many more healthy birthdays with you ⭐

Yoga anniversary

Ok, So I try REALLY HARD to not evangelize yoga....
I never want to sound like this....but it is funny as all hell

This last week I celebrated my 4th yogaiversary
I have been going to yoga three to four times a week for four years now!
It is the longest I have ever participated in an activity and still want to go.
This is amazing to me.

what!? are those muscles!!!
extended side angle with a double bind

I started yoga because a couple ladies I know wanted to try it
...I am the only one practicing.

When I began I was just out of my stage 4 endo diagnosis and wanted to find a way to start and reclaim my body back. I was in incredible pain from my cycles
and my back was weak and I felt broken
...just totally broken.

I started to see a difference in the first three months, I was able to mange cycle pain better.
I learned how to breathe more effectively and move my body.
I can manage stress (physical and emotional) better.

I am stronger and feel like I am in control of my body again
I can't do everything I want YET in class,
as I am still figuring out what my endo has seized up and what I can work through
...and what I can mentally believe I can do;
because it really is an exercise of the ego.

I can look at myself in the mirror while practicing,
but I will never be a front row person and I am ok with that.
I can practice next to a visually pregnant woman and not cry or focus on my loss.
I continue to do yoga in strange places at home (like above) and in public places where when I feel stress I do "lions breath" and make The Barren laugh.
I know my tummy will never be flat, no matter how many situps and how much food I restrict,
I carry the visual reminder of my losses in my belly, presenting at 10weeks forever.
I am embracing that too.

I thank my body after every class for being able to heal and move and breathe.
I like feeling strong
I am pretty proud of me right now and I simply wanted to mark this with a post.
I am tooting my own horn
and that is OK too sometimes

Cycles

The proceeds from this t-shirt help provide menstrual hygiene kits to people experiencing homelessness

I only get my period four times a year now.

It is part of the agreed plan to control my endometriosis, fibroids and cysts. 

It has been working well, and retarding growth on the current fibroids and any creation of new ones.

It has also allowed me to keep my uterus instead of having the suggested hysterectomy.

At first I thought it was like being neutered; taking away something so sacred as a monthly cycle.  The monthly pain left me unable to stand upright, or eat or sleep, so the idea became a welcome retreat from pain and in many ways a space to grieve my lost fertility.

I had to walk away from my efforts twice in 8 years of trying to make a family. 

When I first went off the monthly pill to dive into the pool of trying, I was almost immediately faced with a wall of pain and only after half a year was I able to advocate for further testing which first revealed my fibroids and the sudden growth had me at an oncologist. 

Back on the pill to shrink them and try to give me a window to try to get pregnant again.

The second dive into the pool had me in the ER and multiple trips to the doctor to find answers to the miscarriages. Suddenly 8 years passed and it was too much loss and too much pain to live.

I went back onto the pill after my removal of a large chocolate cyst, and an ovarian cancer scare;

that confirmed my stage 4 endo that had head-locked my ovary behind my uterus, a septum in my uterus and calcified fibroids.

The road was shut.

I grieved and celebrated this information at the same time.

I did nothing wrong in my efforts to get pregnant, but my body that I had lovingly cared, for had decided that no child shall survive in me.

Now 5 years later, I am facing a new kind of knowledge.

My periods which only come quarterly,  will eventually stop coming all together.

I am prepared to grieve that as well.

a bitter sweet party

I have my period now, I have always been a full moon bleeder.

I guess I am a druid that way, an earthy girl, a wolf woman.

I can now not have to decide if the pain is bad enough to need to go to the ER, 

instead I can sit on the couch or sleep away the mood and aches.

Still honoring the need to take care of this body.

My period arrived later than normal this cycle, and for the first time in a LONG time, 

my mind did not go to the "maybe I'm pregnant" thought...

in fact it never even entered my mind.

Instead I thought, soon there will be no more.

Putting feet where my heart is

I have become an voice in the fight

I am making choices everyday to speak up, regardless of my fears.

I am actively choosing to attend marches and sign petitions and make calls.

I was quite overwhelmed for a couple weeks, 

slipping into the door of depression for a time and again.

I felt the weight of my white privilege and 

the responsibly to make sure others acknowledged theirs.

I felt angry and heartbroken at family that said they loved me and the world around them,

 but then stood in support of Lord Marmalade and his racist, sexist and xenophobic choices.

I have made the choice to be a voice, 

I am fighting the BIG fight, looking at the BIG picture.

I am thinking about the generations after me, 

I am trying to secure the rights and safety.

I am learning and growing.

I find being infertile in this struggle has given me a unique voice

in this conversation. 

For that I am thankful.

Endometriosis

Another member of the sisterhood!

My how things are changing, so many more women are open about their reproductive health and acting as cheerleaders for others...here is the newest:

http://www.msn.com/en-us/movies/celebrity/daisy-ridley-opens-up-about-endometriosis-in-empowering-instagram-post/ar-AAgRHt7?li=BBnb7Kz&ocid=mailsignout

The tides have turned

If Buzzfeed can post this

I know the world has begun to shift...

someday soon, there will be no more shame!

Sense of self

 

 

So after that last post, where it was mostly just brain vomit...

I started sitting and reflecting on who I am now.

 

I really think I have shook the label of infertile as my FIRST descriptor of self.

In fact, it feels like it has shifted pretty far down the list of identifiers.

Does that mean that I don't still ache so deeply for the babies I am not watching grow up?

Does that mean that I still don't think about how my body didn't do what it was suppose to do?

Nope.

Everyday it enters me mind, but I think my relationship with those events

are in a different place now.

They are not forgotten but more like interned,

almost as though, I have allowed them to lay to rest;

transcend this earthly plane and ascend to a new level of conscience.

Does that make any sense?

 

I am seeing signs of it regularly now.

I look at babies again, and smile at them, because they are funny and drooly.

I am not angry when I see a pregnant woman,

but wonder how long she tried for and how scared she might be at this new road in her life.

I mentioned to my yoga teacher that I couldn't do some poses because of my endo, but I mentioned it in such a casual way, you'd think I had said I couldn't because of a head cold or something.

I am thinking about how to make memories with my niece and nephew as a way for them to remember me, not act out re-imagined situations I might have had with my own children.

 

It is strangely liberating, and slightly sorrowful.

I am growing

That is my best guess at this

 

I spend a lot of time alone, whether in the studio working, or just being me. 

I reflect on strange things like:

Where do the city raccoons live that eat out of the city garbage cans?

Why do some finger nails grow faster than others?

Why are some people afraid of quiet?

What can I do to be more focused?

How would I feel if I applied and got a residency abroad?

Why does cheese seduce me so...

 

Being alone and quiet a good portion of the day, makes me realize that it is indeed a gift.

Although I would have loved a home full of boys (that is what I always imagined)

I question if I could have been who I am if I had that too.

I am suppose to make art, but would I have still stayed on this path with a baby?

I am finding that I am seeing this now, as a sort of re-gift.

I was denied so much for sooooo many years, and so many more ahead of me.

I guess I am justifying what I have now as a new beginning, or gift.

Maybe I am simply making a lemon drop from a bushel of lemons...

but that seems to be my mindset these days.

 



Shifts and Alterations

      Mind you this is literally day one, but I am making plans!

I got my blood results back and aside from needing to take a multivitamin,
my cholesterol is acting all wackadoodle!

I have been a lacto-ovo vegetarian for 23years, often flirting with veganism...
I don't drink milk, but I really love goat cheese.

Normally this fat in the blood thing doesn't come into play...

but as I age I am finding that genetics might be factoring into things.
 

My father has to take meds for cholestrol, but he kind of uses it as a "this will fix my food choices" medication and his doctor really doesn't care. I love him, but he also considers fast food a realistic option for meals on a regular basis, and runs from most veggies.
For me, the only thing that has changed from last years results when I had a lower level,

is that I am back on BCP and I am drinking a lot of black tea.

 

green tea this morning

 

I did some research on the "dr googles" and found that the BCP can effect triglyceride levels.

I love scapegoating the pill, it is a double edged aide in my life.

 

My doctors have had me do this before; I have swapped out egg whites for whole eggs,

and stopped eating cheese (and just about went insane) and my level lowered a little
...but not significantly.

So this time I am attacking the results in a new way.

I am stopping my morning black cup of tea with 2teaspoons of sugar.

( I will allow myself a cup of almond milk chai 2x a week, I have to not punish myself)

 

I am also researching the anti-inflammatory diet for controlling/suppressing endo.
That also suggests moving to green and oolong teas
(there are now a MILLION tea shops so I am sure there will be a good replacement)
So this swap will be two-fold
and

I am also getting an indoor exercise thing, jump rope or something like it.

I figure I can attack stress this way too and do little workouts throughout the day instead of the daunting "chunk of time" that always seems to allude me with my upside down schedule.
(I get up at 5am for work commute for an hour to work, but home often takes longer and I am often home after 6pm....then dinner and email and bed by 10...on days without classes or business meetings after work)

I am pissed about this result...I have spent a good portion of my life controlling what I eat and to further reduce my options drives me nuts and feeds that destructive part of my brain that makes me think I am fat and lazy and unpretty because of a number.

So I am calling in my "I'm gonna handle this inner femme fatale"
and instead of being really angry, I am just gonna fight back.

Deep down, I fear the number will not really reduce that much,
but I want to at least feel like I am trying everything.
Sound familiar?!
 



and the results say...

 

After dealing with a mountain of nerves in the anticipation and an exploding stomach
(from said nerves)

I went and got my (self advocated) 6.5 month ultrasound recheck post surgery.

I travel to another nearby town to check into a hospital and have the most rockstar tech, Ms. Fabulous, perform my test. She is a transplant to the country and use to be a high risk pregnancy nurse. She is crazy compassionate and I have been talking with her for so many years now, we have shared portions of our stories while she is "wanding" me. She is also a teaching tech, so she often has other women techs with her. Yesterday was no exception...well yesterday was exceptional. I don't care for the exam, I am sure no one does, but after about 20 of them they don't bother me. I do not like the preparation bladder expansion portion, as I need to drive half an hour to get to the hospital, so the drive is me hoping that I have consumed enough water to blow up my bladder but no so much that I piss myself when I arrive.

Ms. Fabulous, got me into the room and introduced me to the tech, asked why I was there-you know the general stuff and when I told her about the surgery and I had two really bad cycles that scared me; I was self advocating and getting this exam to make sure nothing new was filling the space.

The tech looked at me and told me she had a cyst that took her ovary at 20, and that they did a c-section size surgery to remove the ovary. She was now past menopause and was glad to be done with the pain of endo. She told me she felt for me. (that was nice)

As Ms. Fabulous started the exam, we laughed chatted and she said she could see my "guys" which is what we call the fibroids (Ms Fabulous says cysts and fibroids are boys) then my uterus came on screen and I said "there is my girl!" She smiled and she typed uterus on the screen...the student asked if I had children...I said no, that is what my last 8 years was a quest for...but it didn't happen.

She was quiet. Then Ms Fabulous told me her mother called telling her that her daughter could not possibly be happy without children (Ms Fabulous doesn't have kids) we commiserated that parents often don't get it. I told her that my MIL told me she was disappointed we didn't adopt and that it was easy. The student piped in and said " UM no it is not, I adopted and it was one of the hardest longest things I did" I told her I told my MIL we couldn't bear another heartbreak.

We had formed a solidarity in that darkened room, with a wand up my vagina admiring my uterus that I have fought so hard to keep.

The very early unofficial reports are in, well according to my AMAZING ultrasound tech, she confirmed that my left ovary still has no additional growths.

She had a hard time finding my right ovary because

the endo has pulled it pretty far behind my uterus but she did.

She told me I had "small birth controlled ovaries", she said that she had to triple check as she has become so familiar with my endometrioma that she couldn't believe she was looking at my reproductive system.
I thanked her as always for sharing what she saw, that I never hold her to her word, as I know she is not suppose to say a thing...but I am so glad she does, because a weekend of worry is not healthy and she agrees. I left feeling strangely normal and unconcerned.
I had booked a massage to follow the ultrasound, as I knew I would be pretty worked up about it.
The masseuse, was OK, I am bruised today, which doesn't feel very relaxing...but I can float over that, as I am holding onto the potential good news for now.
The nurse from my doctors office should call with the results Monday or so and
say her famous first words to me:
"Hi honey it is me, well you have fibroids but you know that already...."
 

Rocks, and sticks

image via vintagegal

I wanted to post all week, in fact I was so sure that my week off was gonna go smooth I "played hookie" on Tuesday when I felt a little worn on waking for work.

I imagined spending a week making art, and honoring my body's needs. 

I was sluggish and wanted to be kind to myself.

It was the calm before the storm to say the least!

By Tuesday night I had cramps but no period, so I went out with girl friends to distract myself.

I had a glass of wine, shared some time and by the time I got home I was spent...I figured it was any moment before good ol'Flo was gonna show up...but no.

Wednesday I was even more tired and crampy but I kept on trying to distract myself and made some food for a friend in need and delivered some valentines locally. By the time I got back from that little outing I was shaking from pain, and my period had finally started. I took my normal 12hour pain pill and figured all would be taken care of in an hour and I was good to go.

Boy was I wrong...

The next four days were spent sweating, shivering, cramping and calling a pharmacist to see what pain pills could be taken together. I soaked in tubs, walked in circles, curled into fetal balls, and whimpered a lot.

I repeated a mantra: I am thankful for my Frankenstein ovary, I am thankful for my angry uterus.

I can feel all they are capable of, and I am thankful for that.

 

No romantic valentines days here, I had a migrane and such severe breakthru pain, I passed out after taking a Norco. I scared The Barren well enough that he stayed home Friday to make sure I was alright, as what he saw was familiar of times past.

I was scared and worked really hard on not visualizing every ovarian and uterine catastrophe possible. I then vocalized each of those to diminish their power, and laughed in their faces...while crying. I think The Barreness was cooking up some party games for me.

Yesterday, was the party to announce my SIL pregnancy to the family. I was prepared, and mostly comfortable enough to wear something other then PJ's, my period seemed to have stopped and I could see the light at the end of the tunnel....but The Barren was not on board I found.

He was grumpy and sad and concerned.

As lovely as the news is, it is also the reminder of what we got overlooked for.

We left a little early and after the announcement, and headed home.

I was cramping again, and bleeding again.

We sat and watched Downton, and headed to bed...then after a night filled with discomfort, I awoke with extreme stomach pains...

I sent The Barren to work, texted my work that I was sick AGAIN and faced this alone.

Turns out I got some food bore something, and was about to spend the next few hours buckled in pain, and moaning on the toilet.

Before The Barren left, I was groaning and staying "pull up those straps girl...it will pass."

Then it became, "This is temporary, it will be over soon."

To finally: "I am broken, this is what it feels like to be duped, this is how you break a spirit."

 

Around 8:30am, after three hours of groaning, my mother called: "what's going on? I thought you were feeling ok"

Me: crying, and whispering " I feel totally broken, I have been insulted and made a fool"

I couldn't help but remember the words from the doctor, after the surgery...You'll be pain free for 6 months at least after surgery..(off the pill). You'll be so much more comfortable.

I am ok once the pill is in my system, but this transition, this first cycle was terrifying, painful, and insulting. I bled out of my clothes again, I was soooo bloated I couldn't put on my pants, I was on heavy pain pills again and totally not functionable. I felt like a child....

I tried to comfort my dear Barren by saying, in the last three months, I have had surgery, gone onto hormone pills and that is a lot of adjusting in a short time. How can I not expect my body to react.

I get kicked a lot by life, but I'm a tough cookie and I always come out the other side.

It seemed to work for him.

I just need to convince myself now.

Waiting for that shoe

" the doctor will see you now Barreness"

 

I have yet to return to work, The Barren wanted me to take the full time and wait until I saw my doctor before heading back into the pit of chaos known as work.

These last few days have been filled with me trying to do more and more so that I could gain momentum, and the shock of a full workday and commute would be lessened.

I sat on my arse all day yesterday posting to my shop and writing a newsletter to my collectors and art colleagues so I am still relevant.

 

I am mostly trying to not think about tomorrows doctors appointment.

I really have no idea what to expect or what to prepare for.

 

The Viscountess came over the day before yesterday and spent the day here, she was a brave cowgirl and sat as passenger as I took to the wheel for the first time in two weeks. I ran some errands and she kept me company. It was nice, it kept me light and I felt like I could spoil her a little by picking up lunch and we sat and chatted as we ate.

I had left the room when her cell phone rang and only returned to hear her say to the person on the other end:

" well, we had a thing with our daughter. Yes, we thought she had ovarian cancer, but thankfully that was not the case. but they were able to tell her why they couldn't conceive.
Yes I am with her now, I will call you later "

 

It was hard to hear those words; it was hard to hear her have to say them.

This morning I got out of bed, tried not to puke and then took a shower.
As I had yet to see the doctor I still had to follow orders of:
 "not letting the spray directly hit your incisions"
Shower time is like twister...lots of bending into shapes that are not normal.
I got dressed and was able to button my jeans and headed to the appointment arriving ten minutes ahead of time. I was placed into a room that took my breath away:

creepy and very prepared for splashes

I was told to undress from the waist down and wait for the doctor on that chair.

It was icky and I was left alone longer then I should have been.

My doctor arrived and I mentioned to her " this is quite a room"

she agreed...and then went to tell me about the results.

I have stage four Endometriosis, she said

"you pretty much have really horrible horrible endometriosis"

She went on to tell me how my tubes are suppose to be in front of my uterus but they are behind it and twisted and fused to other bits of scar tissue. She went over the pictures she took with me.

I thanked her for saving my ovary and she was gracious about that.

I asked if any pathology was done on the cyst and she said yes:

It all came back benign and no signs of cancer.

I was happy....

then she mentioned again my fertility, my mood went into " mask mode"

She told me that although there was soooo much scar tissue, there was really nothing she could do to improve my chances of conceiving. She was sorry about that, she then said " you kind of got a double whammy, with this level of endometriosis and the septum in the uterus..."

I told her I understood and thanked her.

She assured me that I was calling the shots, that unless another cyst formed (which is decreased now that I am on BCP) there is no need for further surgery. She mentioned that if pain returned she had a three stage plan to address it and the last step is chemical menopause, not hysterectomy.

In some ways I was glad to hear that.

I just need to stay on BCP until menopause...which I wonder how you would know that menopause had started if you are ...anyways...another topic for another day far off in the future.

She assured me that endometriosis was not hereditary and that if my niece complains of painful periods, push to get her on the pill to preserve her reproductive tract.

That will be an interesting day...she is only 8 now...but I will fight for her.

 

My button is starting to open, like a sick and twisted bud of a flower....

She looked at my incisions and agreed that I had a pool of surgical glue in my belly button and that I could pick at it if I wanted to...ick! and then said I was ok to go back to being me slowly.

When I asked if I could have sex, she asked me how many days since surgery? 14 today...yeah that should be fine if I felt like it.

I told her I was having the most amazing dreams...she laughed and said gotta love that little extra bit of estrogen....

I had a dream I was winning porn actress of the year and my parents were there, but I didn't want them to see me on stage so I kept coming out and telling them the updates of the awards show.

 it was STRANGE!

 

I left the appointment in a daze, shell shocked and not sure where to place all these feelings.

Grateful beyond words, for being cancer free...but devastated so deeply at the real gritty reality of my fertility. I wandered the mall alone for a couple hours just walking and window gazing. It seemed like an easy way to just walk it out, process bits...and not collapse into a puddle.

 

So much to process

What Remains

 

 

I made it to Thanksgiving at The Viscounts and Viscountess's castle.

My brother (I'll call him The Earl)  showed off his well exercised domestic skills and cooked up some seriously yummy eats. Most of which I could only have a tablespoon of, as my tummy is still quite sensitive to food, in general...and seeing that I really wanted to sample lots of things that were not boiled potato, toast or matzo balls I was eager to have tablespoons of lots of things.

 

The Earls' in-laws were there and it is sad to say all the lady's from that side are also in some phase of struggling with fertility. One opted not to come, I totally understood and empathized. She has in the last year, had multiple IVF rounds and even egg donations all of which came back with no implantation's. The other Sister, was there last night and shared with me that she had to put the breaks on the "games", after $12,000 of heartbreak.

She didn't know I had, had surgery (thanks to the Countess, the Earls wife, keeping mum at my request) and asked what endometriosis was as she had it too but didn't know what it was. I spent some time explaining what I knew about it and she sort of had a light go off in her head.  She told me that she wasn't a candidate for IVF as she was told there were not enough eggs left, and she was too heartbroken to continue. I hugged her and told her I was so sorry....she gazed at her husband playing with our nephew. I could feel what she was feeling, see what she was seeing and I told her sadly that even after all these years, for myself...the pain is still there, but the way I respond to it has changed. She was sort of in shock. I leaned over and whispered to her

" this is not your fault, you did nothing wrong"

She started to cry, and I realized I could offer no other condolence but that for her.

 

After we made it home, The Barren and I settled in for some post tryptophan television watching.

We watched the end of 50/50...we had seen it before and knew what we were in for, but I needed a scapegoat for shedding some tears.

As I let some go he asked me what I was thinking about.

I told him that although I am cancer free and overjoyed at that, I am having a hard time forgetting about what was found and that it is still heartbreaking.

He told me he understood and allowed me to continue to cry.

*

The Barreness has filled my abdomen with scar tissue.

My bladder is fused to my uterus and a fibroid is tucked in the middle of them.

My tubes are not in the right place; they have been pulled and twisted under and below themselves.

I had so much scar tissue she was only able to remove a little endometriosis.

A piece that was trying to attach to my bowel and maybe bits here and there.

She told my beloved that when things get too uncomfortable for me, that a complete hysterectomy was all that was left. She would have to perform this abdominally, as the surrounding organs and space needed exceeded laproscopic conditions.

 

So today the bruises are yellowing, with green undertones...I am able to walk and sit up strait.

I am still swollen, I am slow to the uptake in some ways...but aside from some surface sensitivity on the incisions I am feeling more like me, except a little weepy.

 

I'm Alive

First memory of words coming out of the operating room:

" Do I have both ovaries?"

" The Doctor only removed the cyst"

tears running down my cheeks

 " That is such a relief, thank you "

image via: vintagebirdlostatsea.trumblr



 

There is a lot to process, The Barreness has been busy, but the things to know are:

The cyst was removed, and there were no signs of cancer

There was a lot more scar tissue than she was expecting

The only other surgery I would need to have would be a hysterectomy

There is no way I could get pregnant with out assistance,

endometriosis has twisted and turned my tubes to a non-functional level.

 

My heart is filled with humility and love

I am overwhelmed with a wide range of emotion



Today is the Day

 

Who knows what she will see when she opens me up

Who knows what she will take and keep

I am balancing on a high cliff, just holding the hands of my friends and family



Here Ye, Here Ye

via: art.co.uk

So I finally told my parents about the surgery.
I told them on Halloween

The Barren suggested I just start the conversation with
" I am having surgery"

I was working on not puking on the ride over or while knocking on the front door.

I took his suggestion and I got their attention.
 

I adore my parents, but have spent almost all of my life trying to be heard by them.

I have a long history of speaking up, but being dismissed, or not heard, literally.

So The Barrens suggestion was a good one, as they fell silent and allowed me
to explain what was going on.

 

The Viscount (my father) fell pale, and got very quiet. I became emotional.

The Viscountess (my mother) sat with her hands between her knees, lips tight and engaged.
I calmly explained what was going to happen and when and they listened.
Then asked a few questions and then said they heard me and respected my boundaries.
I told them I was not going to make an announcement to the family, that I welcomed them to share the information as it might allow them feel better or allow them to process the information better.

The Viscount then proceeded to not say a word for the next 24 hours, not to his wife, myself or anyone else.
The Viscountess took my advice and spoke to a friend about how she was feeling, and said it allowed her to feel weigh lifted from her shoulders.
She then directed her attention to her husband and he finally said:
" I am just focusing on being positive. I want this to all be OK"
The Viscount has called me everyday since Halloween to tell me that he loves me and is thinking about me. He normally does this every few days, but now it is daily.
Last nights call was a dozy sweet dreams phone call.

The Viscountess has now divulged to me that she feels useless and unneeded in this whole thing. I am currently trying to find something "special for just her" to do post surgery that will let her know how needed and important her presence is.

I am very thankful that I have parents that want to be very much supportive of this step in my life, and friends that are wanting to help anyway they can...even encouraging me to cry.

I had my EKG this morning, as one of the two pre-op tests that need to be done before my pre-op meeting. I was fine until the nurse was hooking up the electrodes to my ankle when she asked so what are you going in for...and I had to say the words out loud to a stranger.
" I am most likely having my left ovary removed because an enodmetrioma is being a little bitch"
she giggled
I said "I am sorry but I'm really scared and I didn't want to have to do this."
She told me she understood how scary it is to make these choices. She then shared her personal struggle to keep all of her reproductive system in the face of a dozen+ fibroids and post ablation.
She said it is an important fight, but we have to remember that we want to be around to fight it.
I agreed and we did my EKG.