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

Detachable Penis

 

Since my surgery I have had the most amazing and over the top dreams!

I normally have pretty crazy vivid dreams but these most recent ones seem to be taking the cake.

Day two after surgery: I had a dream I was playing with penises, like they were cards in a deck. Shuffling through them, trying to figure out whose were whose....I awoke laughing.

Day three following surgery: I had a dream that I was giving birth to two little girls. I was in a field of flowers. A commercial field of flowers, the kind that flower growers harvest from...I was desperate to find a place to go inside. Inside I jumped up onto a counter and proceeded to give birth. As I reached for my baby, my hands were pushed away...and the children were taken. Never seen.

I got off the table and wandered in the fields looking for The Barren....then awoke.

Day Four post surgery: I had a dream I was running across open land, running to something, but I am not sure. The earth below my feet became softer and softer. Soon I realized I was small, the blades of grass where engulfing me, and I had to push them out of the way to try and see what was in front of me. The earth gave way and I was slogging through a swamp...the mud filling my clothes and pulling me under. Floating in water...serene and eerie. Over processed blues and turquoise colors, sea grass waving.

Day Six: I had a dream that I was working in a gallery, and that all the art on one wall had sold...some very rich person came in and bought half the show. I was shocked and so excited. The room looked like the inside of a Moroccan tent, lavish rugs and fabric walls, glass chandeliers flickering from the candles inside. The someone came up to me and said they wanted to buy a particular work of art...and showed me an image of a piece that is going to be in an upcoming show I am in this December. She said I must have this...I smiled and recognizing it...and remembered that I needed to still frame it. (in awakened life, I have been debating on what to frame it in, concerned that the frame might be too much, but clearly this appeared as a sign to get it framed, it needs to move on)

Last night: I dreamt about penises again. This time The Barren detached his and handed it to me. I was confused but entertained once again. I had penises in my hands and they were there for my entertainment.

When I told The Barren about the dream, he laughed and started singing the the song:

 

The Barren and I have been making a lot of jokes about this "pelvic rest" thing and how it will be great to be off it. We want to get back to our loving, and jumping and goofing around.

The Barren was telling me bedtime stories last night about how he wants us to go out and have a good laugh, relax and tell all this bullshit to FUCK OFF.

I think we have been cooked this year.

Between starting it with funerals and then my mom and then more death and then the cancers of us...we are done thank you very much.

Our dance card is full and we would like to not be invited to this party again.

 

I just have the followup appointment to get past, the last little bit of anxiousness for this year.

Then I am gonna party...with wild abandonment and I am bringing my penises!

 

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.

 

Pelvic Rest

 

I had a horrible start to the day yesterday.

I was expecting a crash post surgery, but thought it would have arrived the second or third day after...not the fourth day.

I had spent the whole night coughing.

A dry irritating cough and no matter what I did I couldn't get it to stop.

I was curled around a second blanket fearful that if I coughed just hard enough,

I would pop one of the incisions.

 

I had gotten out of bed sometime in the middle of the night, thinking I was going to puke.

The pressure and pain against my diaphragm was intense.

It never happened, maybe my visual imaginings of my insides squeezing out of my incisions like a sick version of cheese wiz stopped it...or I was just able to battle it away.

 

When The Barren caught sight of me in the morning he was ready to take me to the ER...I spent the next hour and a half convincing him it was a sore and pissed off diaphragm and not pain from the surgery. I also reminded him that I had started BCP again and having to take a two days dose in one day could also make me feel puky. It was a horrible combination.

I think he is still unconvinced that I haven't needed pain pills since surgery.

I haven't. I am not sure why.

The second day post surgery I had the neck and shoulder thing, it felt like someone had punched my neck and shoulders, that pre-bruising feeling....but nothing that would require a pain pill.

 

I am totally the first to sign up to sign out...but I think the glee, thankfulness and euphoria of knowing I either caught it before it became cancer and that there were no signs of cancer in me has me riding a pretty high happy train.

 

I had gone into surgery with my period; pain in my lower back and some cramping.

When I woke up, there was no pain.

Nausea: lots and lots of that...but no pain.

day two post surgery
swollen tummy, bruised button

 

I had some vanity moments yesterday too, I am not going to lie. I feel puffy and swollen and my bellybutton is filled with surgical glue, so I can't really tell how much it has changed.

I liked my button, it was the only unique thing that tied me to my birth, like a fingerprint of the day.

I think it has changed now. *sigh*

 

I spent yesterday with The Viscountess, she scrubbed my stove (she does that with her neverous energy, it is how she expresses love)  and spent time just sitting with me and keeping quiet company. She had me eat some salad and that started the deep real burps (even though I have been eating gasx and walking like a loopy girl) it started to relieve the pressure and then I started drinking pear juice last night (a tip from a friend; to get things moving out) I awoke this am feeling closer to fine.

 

I am still processing the reality that is inside me, I will share that later...but I am today, closer to fine.

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



Dreamy

image via graphicsfairy.blogspot.com

 

So last night I had a dream that I was going on this crazy roller coaster ride.

I sat in a log like seat and went up up up a tall slide, into the stars...then at the peak there was a room filled with tables and people talking in languages I didn't understand.

Then you arrived, and said we were leaving here, I told you about the slide being so tall and scary and you put your arm around me and said, its no big deal.

and we slid down the same slide thru the dark, wind rushing past our faces and I remember feeling safe and letting go of fear.

At the bottom of the slide we got out and the phone rang, I picked up and it was covered in like brillo pad/hay and I heard The Viscount voice saying " how was the art gallery?"

 

 

I'm Sorry Vagina

I had my pre-op today.

It was horrible to sign the forms, that state: "you could die"

on them as remote outcomes from this surgery.

I was wiping tears from my eyes when the doctor walked in and saw me.

She asked what she could say that would help me feel more at ease.

I told her I was afraid I was going to die.

She gave me the chances of me dying from this surgery and they are pretty slim.

She spent time again answering my copious list of questions that ranged from where am I going to will this effect any sexual function and has assured me that she will have my best interests in mind when assessing my reproductive system.

She still has this little light in the back of her head that this surgery will "fix our fertility problems" and so in many ways she will be operating to protect my fertility.

That looked weird typing...

 

 

 

She knows The Barren has the right to make calls if things look bad,

and he knows what I do and don't want to happen.

She ran down what she will do, and good to worse versions of each step.

She told me that I can expect some bleeding/spotting after the surgery as they

" are going to put a device into your vagina to manipulate your uterus"

 and that if I wake up with more then three holes from the surgery it was because they were unable to get the excised pieces through the scopes.

If she sees a tumor she will send it to pathology while I am asleep and will then contact my hubby for approval of what is or isn't to be done.

These steps are the scariest scenarios and she knows that.

She has assured me that I will be sore and uncomfortable for a few days.

and then the final instruction: nothing in your vagina for two weeks

 

I left her office with labs and instructions for hospital pre-registration.

I was terrified and in auto mode, complete what needs to be done....

The Barren left for work and I finished up on my own.

 

When I got home, I met a friend for a cuppa tea and she saw how exhausted I was...today was harder than I thought it would be and I am now allowing myself the rest of today to feel scared and cry uncontrollably.

Starting tomorrow, all meditation focuses on Strong, Brave and Confident me.

 

I don't want this to take me out, I don't want to be defined by this, I don't want this to be the end of my happiness, I don't want this to stop me.

***

I want this to be the start of a new path, I want this to be a gift, I want this to allow me to walk taller, I want this to make me stronger, I want this to be OK.

 

Dear Vagina,

I am so sorry for what you are about to be put through.

I promise you this: I will continue to call you my own. I love you and want you to be healthy and happy. I will nurse you back to health and comfort you when you are sore and achy.

We are in this together girl.

No matter what they do to us, we have each other.

They can try to get us down, by making us feel like we are broken but we know we are stronger than that. We will recover from this and find many new fun adventures. We have been through a lot of tests and have been introduced to many people, some were even nice enough to introduce themselves first before making us swallow a wand or finger. We are hopefully about to crest, and have far less introductions in the near future. We will celebrate this victory.

In the meantime, be strong, be brave and know that you can recover from this latest challenge. I believe in you!

Love, your life long person 

Weekend Warrior

I spent the weekend filling my time with "busy work"

You know the chop wood, carry water kind of Fantastia broom scenerio

...so that I didn't think about anything but what I was doing.

It worked alright.

I have found that I go to over preparing in order to deal with unknowns and stress

 

image via Hyperbole and a half

 

So I have EVERYTHING in my house washed...

like even the weird slippers that I only wear once in a blue moon.

 

I have cleaned and stocked my medicine cabinet with

pills and bandages that are not expired.

For some reason this was really important

 

I have purchased enough cat food to feed the cats for another two months!

I have gotten cards to send lovebombs out to others so they arrive next week.

I convinced The Barren we needed to get a new mattress,

as out 13year old mattress was just plain tired...I have been working on this for months!

I also got a piece of furniture moved into the garage that we are looking to sell.

I have organized the garage AGAIN.

I am tackling the kitchen clutter now...

well tonight I will be, while baking a cake for the friend who helped move the

furniture into the garage.

 

I am framing artwork for exhibitions ahead of time and meeting with a couple friends this week.

This morning I awoke smiling and it quickly turned to tears....just a little cry before showering.

I asked The Barren if I could change my mind, he softly said "no, this is the right choice"

I knew, but I wanted to feel like I still had some power over all this.

 

I am currently practicing a theory the Dalai Lama mentioned about laughter:

 

"I have been confronted with many difficulties throughout the course of my life, and my country is going through a critical period. But I laugh often, and my laughter is contagious. When people ask me how I find the strength to laugh now, I reply that I am a professional laughter."
--The Dalai Lama
 

The Barren after a long hug looked at me lifted my arms and started to laugh at me, his laughter was contagious and I laughed too, shaking my head and laughing. It seemed silly at first but after a while I could not tell the difference between my crying and my laughing.

Have you ever noticed that? That moment when you are laughing to hard you are crying, or crying so hard you sound like you are laughing.

 

Meditations, mantras and naps for the week. Trying to lull my panic attacks and

convince myself I am brave and strong and able to handle whatever is ahead.

 

Tomorrow is my pre-op.

 

Giggle

So I stumbled across the last 7 minutes of "The Vow" and when

The Barren caught sight of it he said:

"Do they stay together in the end?"

 

I told him he had seen as much as me and I wasn't sure

When it turned out the way he wanted in the end

he started talking about how he would cast our story.

 

He said he wanted Joseph Gordon Levitt to play himself...

when I asked him who should play me...he said you pick,

I was sitting for a moment, just a moment and then

he said "I think Rihanna would be good."

I turned to him and said "that will work, I have always wanted to be a beautiful black woman."

 

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.