Day 2: Identity

I have had serious identity problems since the loss of my babies and my battle with cancer.  I don't know what I am.  I don't know who I am.  I don't know what I am doing or where I am going.  I am trying to be okay with that.  I am trying to roll with it and go where I go.

Day 1: Sunrise

Ok it's a bit past sunrise, but don't worry we are always up before the sun thanks to my miracle son who wakes us in the early, early morn.  I love the morning.  It's my favorite time of day.  It's when I feel most alive, energized and at peace.  It is quiet and still outside with only the small creatures to keep one company.  It's chilly, you need a blanket until the Colorado sun can warm you up.  The tree in this picture is my baby tree.  We plant flowers under it for my kiddos.  I leave them bouquets, pinwheels, Easter eggs.  There are wind chimes and bird houses hanging from it's branches.  It is full of life and love.

Pitied by the Pitied

Recently we attended the Walk to Remember's annual event.  During this event, the names of our angel babies are read, we release balloons to honor them, and take a stroll around a big lake

This is our third time attending this event.  I remember the first time Mitchell and I attended to honor Liam.  We went alone.  I was very, very pregnant with Riley.  It rained on us the entire time.  Very few people actually walked around the lake after the name reading because it was cold and down-right miserable.

I remember reading the names printed in the program and just about losing it over the repeats of last names.....  Hall, Hall, Hall.... Schultz, Schultz, Schultz.....  Holly, Holly, Holly...   All with different first names and dates of birth/death.  My heart ached for those parents.  Coping with the death of an infant once....ok...  But 3 times?!?  I didn't understand how those women were breathing, how they could keep trying, how they kept on living with such an enormous hole in their hearts.

And now...2 years later.   Jackson, Jackson, Jackson, Jackson.  Liam, Riley, Ben and Archer.  I am the pitied one.  The one the mom's with one loss see and think "it could be worse, look at that lady."  "Thank God we only have to do this once, not four times."  "Oh those poor parents.  How are they still breathing?"

To answer your question, Fictional-Pretend-Imaginary-Lady, I don't know.

The walk was especially hard this year for reasons that are so hard to explain.  See...People that have lost babies and now have their rainbow...drive me crazy.   They hurt my heart.  I feel bitter, sad, and oh so jealous.  I will never have a rainbow.

Yes, loss happens, but it doesn't happen to everyone.  People in the loss community will tell you that not all babies die.  It is intended to give pregnant women hope.  It's true, not all babies die, but mine do.

Parents who have lost a baby deserve to have another more so than a mom with 5 kids who has absolutely no clue whatsoever how damned lucky she is.  They deserve it more.  They deserve a happy ending.  But it hurts me more.

Today kicks off Infant Loss and Awareness Month as well as Breast Cancer Awareness Month....Ha!   I guess October is my month......

I am going to try once again to "capture my grief."  Carly Marie runs this program each October where you capture your grief in photos.  One photo each day.  Last year I started but it was just too damned hard for me.  This year I am going to attempt it again

I'm in the The Denver Post!

I'm pretty stoked to share that an article was written about me in my local newspaper.  I'm feeling famous.

Click here if you would like to read the article.

I think I will be carrying my silly little paper around with me all day.  I have an infusion later (assuming decent platelet counts) and plan to show the nurses my paper like a proud parent.

Somehow, I am slightly sad.  (Maybe it's my Nyquil haze.) I guess it is because I'd rather have my babes than an article.  I'm tired of dealing with the extraordinary.  I would like a plain, boring life thank you very much.

Maybe someone, somewhere will read this and be inspired.  Maybe someone who just lost a baby will realize that they aren't alone; that there are lots of use wading through the heartbreak every. damned. day.  Maybe someone will be able to get out of bed tomorrow and go on a walk.   Maybe that's too optimistic for one little article, but those are my hopes.

3/6/2013 Finished 5:50am

3/6/2013  5:50am

Archer,

I am holding you on my chest right now.  Right between my fake boobies (the cancer took my real ones).  I don’t know why you died.  I don’t understand why you had to die.  I love you so much.  We would have given you a good home and more love than you would have known what to do with.  You would have practically smothered in all the love we have stored up for you.  I am so very sad that I don’t get to raise you and see you grow up.  I am not the best mommie in the world, but I try to be a good mom.  I know I would have tried to do the best and be a good mommie for you.  Your big brother, Hunter was pretty excited about you.  I think he wants a baby in our house.  He would have loved you too.  Daddy is very sad.  He loves you too and is crushed not to get to watch you grow up either.

I know you are in Heaven (at least I am pretty sure...) I know you are in a beautiful place where you will NEVER hurt.  I know you are playing with Riley, Liam and your twin brother B.  What I don’t really know is how I am supposed to get there so I can see you again someday.  Daddy says I am going, but I am not very sure.

I am so happy I got to see you squiggle so many times!!  You were so good at it!!  Everytime I saw you on the ultrasound machine, you were just bopping around.   You wouldn’t hold still or lay the right way for them to see whatever it was they needed to look at.  You wouldn’t unfold your legs so they could see your boy bits either.  I love your stubbornness.

I am not sure how I am going to get through losing you.  Sweety, you were my last hope for another baby.

Your little body isn’t doing very well but I am hesitant to let you go,  I don’t want to let you go.  I want to bring you home and make you a part of our family.  But you aren’t here anymore.... you are in Bliss.

How do I memorize your smell?  I had forgotten this part.   The craziness.  They hysteria over anything you touched.  Wanting to preserve anything that may have your fluids on it.  I am considering taking this hospital gown because our fluids are on the front.  I want to cut it out and keep it.

We have decided not to let them do an autopsy.  We don’t want them cutting on you and the results won’t matter anyway because you are my last pregnancy.

added 8/9/2013

I love you little Squiggles.   Good-bye.

Cancer Carpe Diem

Quite possibly the coolest thing about cancer (yes, there is something cool about cancer) is my new need to grab life by the horns.  There are all of these things that I have always wanted to do, but don't because I am scared.  Usually I am afraid I will look like a moron or that I will get horribly mangled by some crazy flesh-eating beast.

I hate slides.  No, seriously.  They scare the shit out of me.  I'm not talking about huge slides, just regular old playground slides.  Scare the crap out of me.

So in June, I decided to go with my husband, my son, and my nephew down THIS:

Yeah, that's me up there on the left.....peeing my pants.

I know that's not too scary to most, but to me that thing is terrifying.  I screamed the whole way down.  Got a little hurt when I caught air on the 2nd and 3rd bump.  Oh... and it was flipping AWESOME.

I have lived in Colorado my entire life and have never been skiing.  Never.  Never even had a pair of skis on my feet.  I have always been too timid and honestly afraid of getting hurt.  Well screw that.

Me skiing....

 This winter, my ass is skiing......bunny hills.  My skiing partner better not crap out on me either. (You know who you are!!!!!!   Actually she doesn't read this.....)

I have always adored colored glass.  Pendants, wind-chimes, bowls, jewelry, love, love, love.   I have wanted for years to try my hand at stained glass but never have purely because of the cost.  Some of the equipment is pricey!  I didn't want to buy the stuff just to end up hating it and have wasted lots of money.  Wouldn't want to take a freakin' risk.  Well screw that.  

Glasscraft in Golden, CO

I am taking a Flamworking class next month in Golden, Colorado to make a kick ass sculpture.  And if I like it, I'm buying supplies to do it at home.  Oooo or taking the pipe making class!

Ya know those mud runs?  Masochists (dressed up like nut jobs) run a 5K in the mud and water with difficult, body-beating obstacles.  I totally wanted to do one last year when I was the fittest I had ever been.  But I wanted to do the hardcore ones.  Tough Mudder or the Warrior Run.  And I wanted to run it, not walk it (I do NOT run).  But I wasn't in the physical shape I thought I needed to be so I didn't do it.   Well screw that.

Anyone know where I can get a quick-release, pink, satin cape for my adventure?

I'm running the Dirty Girl Mud Run on September....ok I'm walking the Dirty Girl Mud Run in September.   Probably during radiation treatments. The run supports breast cancer awareness and research and even lets cancer survivors register for free!  It's free to watch and cheer me on (Sept 14th at 10:30am) and my team is looking for runners if you want to do it with me.  Team name: Fake and Fantastic.  In honor of my bionic breasts.   ps. They have beer.

Next.  White water rafting.  Why have I never been?  I have wanted to do that for ages but have been too pansy.  I have no plans in the works yet.  But if anyone want to go, I am GAME.

I have always been too pansy.  I am done being pansy.  My whole point here is: Get over yourselves!!  Don't wait until you are sick to stop being pansy.  You are not too fat, too out-of-shape, too weak, too scared, or too whatever to do it.  You might fall down.  You might get hurt.  But what the hell is the point if you don't take some risks, push yourself out of your comfort zone and JUST DO IT. (Thanks Nike.) Go horseback riding, go wind surfing, run a marathon, take up basket weaving, learn to spin your own yarn, climb a mountain, go sky diving.  Otherwise, what is the fucking point??

July 23rd

Written yesterday. Posted today

It is somehow apt that today is the day my twins were due.  Today the day of my last chemo treatment. The twins who saved my life.

You see, my tumor was found at my 8 week OB appointment.  There is no way it would have been found as early if I hadn't been carrying my boys.

We all know due dates don't mean shit.  No one is every born on their due dates.  My boys wouldn't have been born today because twin pregnancies don't make it to 40 weeks.  Even when just Archer was left, he wouldn't have been born tomorrow because chemotherapy would have dictated my induction date.

But still....all my papers said Estimated Due Date 7/23.  It was still the due date I told people when they asked (along with a lengthy explanation about how they wouldn't be born then)

I have never felt the meaning of the word "bittersweet" so intensely.

Thank you, my baby boys, for saving me life.  Love you.

Femininity

Merriam-Webster dictionary defines a female as of "or relating to, or being the sex that bears young or produces eggs" and femininity as "the quality or nature of the female sex."  (These definitions really ignore gender identity and the transgendered community as a whole.....But I digress.  I am going to try to ignore that  for right now......)

So technically according that that definition I am still a female because I have born children (living and otherwise) and may or may not have the ability to produce eggs once this whole chemo torture is done and over with.  I feel like getting hung up on the egg production thing which makes no sense.  I feel that any woman that has gone through menopause or has had their ovaries/uterus removed are just as female as a hot-to-trot, bleeding co-ed (yes, I just went there), so why doesn't the definition extend to myself??

I am not saying that I am male or identify with the male gender or being dude in general; I am a woman.  But, I don't feel feminine.  And I should, right?  Femininity is the nature of the female sex.  I sort of produce eggs (maybe......) and have had young so I a female.  Therefore, I am feminine.

 .....riiiiiiiiiiiight.....

I was never the stereotypical girl (I leave that up to my little sister).  Pink, bows, sparkles, make-up, tulle, endless products, fancy hair, princesses, heels, Barbie, glitter, nails, bleeeahhh....excuse me....I just threw up in my mouth a little bit....    Just not me.  But now I feel like every ounce of my female being is gone.

My breasts have been taken away and while my expanders are kick ass and way better than the alternative, the truth is that I have mutant breasts.  I have huge scars, weird puckering skin, blobs and general weirdness.  These things are freaky looking.  Period.  And while their function is not to boost one's attractiveness, they are no longer desirable.  I can't imagine the cringe they would receive from an unsuspecting man (I have to in part include my husband in this category although I will credit him with never, ever cringing). What I have for years considered my best physical feature is now scary looking.

I am bald.  And the longer I am bald, the less I give a shit about covering up my chrome dome.  As previously posted, I used to think my hair to be yucky (thanks for that society and modern media), but now I would be stoked to have any hair even if it just meant getting my GI Jane look back.  Being bald makes me feel like Smeagol from Lord of the Rings.  Here is a little reference for ya:

Notice I chose the nice side of Smeagol/Gollum (who knows which is which....) and I'll be damned if he doesn't have more hair than me!  

My little bits of femininity are being taken one by one.  I had to chop off my nails because I was ripping my itchy rashes to shreds at night while I was sleeping.  I have no Estrogen in my body because chemo kills that too.  I can't keep any make-up on my face (not that I wore a lot anyways) because my contacts don't like chemo so I rub my eyes all the time....hence it all comes off.  I have gained 15 lbs over the past 9 months and I feel like I look like a sausage (didn't I have hips at one point?!?!).

I feel embarrassed even sharing this because I know this shit doesn't matter.  The feminist in me wants to punch me in the face.  My make-up, nails, hair, breasts, body size don't make me a woman.  Big stupid society is the one who says a girl should look like "that".  I know my value is not in the way I look.  I know I am being shallow and vain.  And yes, I know I have to have all of this stripped away from me to save my little life.

I would just like to feel pretty, to feel girly, to feel attractive (to at least my husband).  Just for a little while.  For a day, a few hours, or even just 30 minutes

My Hair...Or Lack Thereof

My hair has been gone for quite a long time now.  I'm oober bald so you think that my body would have adjusted by now.  But I keep having these crazy phantom hair moments (sort of like my crazy phantom boob moments where my skin will itch.....but it CAN'T itch....because there is no sensation what-so-ever.)

I find myself going to squeeze out my hair after a shower.  Squeeze it out like a ponytail which is a length of hair I haven't had in years.  Last night I was all sweaty and went to spread my hair out over my pillow to get it off my neck.  Hey, Lady!!!!  You are bald!  I will do something goofy with Hunter and a pillow and have a moment of: "Ack!!  I will have to redo my crazy hair!!"  Only to remember it is set in place and looks just like it did at the beginning of our hardcore wresting match.

It's kind of nice to have no hair.  No shampooing, shaving or heat torture (as a college professor called blow dryers, flat irons, and curling irons).  I am getting sick of having to wear scarves to protect my gleaming whiteness from a lobster-like sunburn and to keep my dome warm in the constant chilly A/C.

I have seen pictures of me from before cancer was even on my radar and my hair was AWESOME!  I know I felt like it didn't lay right, that it was scraggly and yucky and ugly.  

So here is my PSA for the day.  Even if you think your hair is mousey, scraggly, damaged, flat, too gray, too whatever..   You are wrong!  And if it was all suddenly taken away, you would think your hair was stunningly gorgeous because it kind of already is.

PS.   Go feel your boobs, today.

Unexpected Supporters.

AHHH!  Something about the way I wrote that last post has spurred a lot of comments and texts my direction.  Honestly, I don't care that much that people don't come to things like the butterfly release.  I was just really sad that after Archer died, there wasn't much support from the people who have lost children..... the people who are supposed to get it.... the people who are supposed to understand my heart demolition.

Basic rule of thumb.... If you give enough of a crap to read the last post, feel bad, and send me a text/message/comment, you m'dear, are not the problem.

Where Are You?

One thing I have learned through all of this is that help comes from the most unexpected places.  When your life explodes, things are utterly jacked up, and you don't know how you are going to move on, it is often the person (or people) you last expected who come running to pick you up out of the dust.

A distant relative you don't actually know very well at all sends your kid fun little gifts in the mail.  A network of people you have NEVER EVEN MET send you boxes of love.  Friends who probably aren't in the financial situation to do so continually make you dinners and force you to take them.  Friend to take off work to take you to chemo, even if that means taking you 3 times in a week because it keeps being cancelled.

What I am so sad about this morning are those people who are supposed to help, but don't.  The people you want to support, care for, and love you, but they are....what?   too busy??

I have come to accept that some people in my life simply can't handle it.  They can't handle talking about my disease or my children.  Some of you can't handle it.  It makes me sad.  It hurts my heart.  Because I have to handle it all the time 24 hours a day 7 days a week and a simple hug, phone call, "hey how are you?" from some very specific people would be really nice right now.

I recently attended a butterfly release for child loss.  The names of all of the babies are read and we all release butterflies.  It is very beautiful and I love it.  My grief for the loss of Archer really hit me at this event and has been with me ever since.  I am part of this huge, awful baby grief community right in my own backyard.  I was already tapped into this network before Archer died.  And I am realizing that in my local grief community....of the people I actually know and have meet face to face....no one called me..... no one send me a card....  no one has asked to see pictures of my son...  no one sent me a pizza...  no one sent me flowers.

I am trying to look at the positives.  To see the people who came out of the periphery to help and support me.  I love and appreciate your caring support.  I am trying not to see the people right in my face who I feel have let me down.  Thank you, Unexpected Supporters.  I appreciate every little thing you have done and continue to do

Blankets fo Care Packages

A sweet friend of mine honors my sweet babies

http://brightlifetoys.blogspot.com/2013/04/a-walk-to-remember.html?m=1

You love me! You really love me! (Thanks Sally Field)

When I am down and depressed, I feel so alone and lonely.  The stupid, evil voices in my head tell me that no one cares about me, that I am alone, that people are sick and tired of all my crap and the shit that keeps happening to me (I mean how long can you feel bad for someone, right?)

This is such a complete load of bullshit!  Because then I will get a Facebook message from someone I only met one time who remembers me and thinks about me.  A friend will start a fundraiser (just because she is awesome) and people donate $310 in under 24 hours.  What?!?!  My eye doctor will send me a card.  My plastic surgeon's office sent me flowers!  People that I haven't been that nice to for whatever reason (founded or not) send me messages.

These (sometimes) small things make me realize that the voices in my head feed me complete and utter shit.  Shut up, stupidheads.

I love you all. 

Lovenox

I still have to do Lovenox shots and I really fucking hate it.  (yes, the word "fucking" is necessary here.)  I don't hate it because it especially hurts or because it the shots are particularly bothersome.  I hate it because the whole point of these stupid shots was to keep my baby alive.  That is the only reason I was on the medication.  A lot of freaking good that did.

I am supposed to take them now to keep me alive; to prevent a blood clot in me.  I still don't want to do the stupid, fucking shots.   It's just another reminder (like I would ever forget) that the initial reason for the shots has left me.  That my baby is gone.....again...

Round 4

It's crazy how much you forget about the days after your baby dies.  I don't remember these things until they come up again.  I find myself saying "oh yeah.  I remember when Riley died..."

The days after I leave my baby at the hospital I can smell him/her everywhere.  My hands, soaps, certain foods, my skin.  I can't eat certain things because they smell like or remind me of my baby.  Applesauce bread, red meat, salad, bacon, eggs.  Most of those aversions will stick with me forever.  I still can't eat hamburger since Riley died a year and three months ago.  I'll never buy hamburger again.

A few weeks after I have seen my baby for the last time, the smells start to fade.  I will find myself shoving my nose in his blanket, sniffing the hospital gown that I stole (because I held him on my chest in it.  He stained the whole front between my bionic breasts.  I took it knowing I'll keep that scrap of fabric forever), taking deep whiffs of the Kleenex I put between me and him to try to keep him cool so he wouldn't break down as quickly.  The smell will fade, but I will continue to search for it and for him

Riley's smell has faded from everything she touched, so I know Archer's will too.  The thought crushes me and throws me into fits of panic.

I don't want to shower and haven't since giving birth.  I did the same with Riley.  I feel like I am washing Archer off of me.  It feels like I am washing the bit of him that I have left right down the drain.  The amniotic fluid that we shared, his blood and his fluids right down the drain when I want to keep it forever.  (I am aware of how crazy this sounds.  Especially if you haven't lost a baby or had a child whose body was still in good shape because they hadn't died very long before you got to see them.  I know.  But unfortunately, some of you will understand...).

I know I am done having children.  Losing 4 is too much.  I can't do this again.  I can't give birth to and hold dead child all night again.  I can't say goodbye to and leave another baby in the hospital.  It is too much.

Knowing that I am done, hurts almost as much as Archer's death.  Never again will I be pregnant.  I will never feel a baby kick again.  I will never have another newborn.  I will never give birth again.  I won't get to feel another baby grow and move inside of me.  Although pregnancy was always rough on me, (I was sick, bitchy, and exhausted) I loved getting to feel my baby.  It was this amazing special connection with my baby.  I'll never get that again and it's crushing.

It means my son is alone.  He doesn't get the baby brother/sister that he has been told 3 times will be coming to live with us.  I didn't want him to be alone.

I would love to adopt a child.  But I find it hard to believe that anyone would give a child to a woman who is fighting an aggressive form of Stage 3 breast cancer.  "I might not be around in 3 years, but please can I have that kid you are in charge of?"  I would never chose someone who is sickly and might not be around later to take care of my baby.  Of course, I would chose the healthy couple; I would chose stability.  Not the home with a mom who is sick from chemo, radiation and multiple surgeries and unable to care for herself, much less a new kiddo.

I know this all feels very self-defeated but it feels like the truth of the moment.

My son.....is amazing

At preschool they give the kids these boxes to collect change for children with leukemia.  Hunter started asking us for money for kids with cancer.  Then he wanted to go ask neighbors!  So we threw on our jackets (ok a ratty blanket in my case) and asked a couple neighbors for "money...or cash....or coins...." for kids with cancer.  Now he wants to know who he can ask tomorrow after sleepy time. 

My son is simply amazing.

Amy: The Bionic Woman

Plastic surgery.   Shudder....

I've always had an issue with plastic surgery.  I didn't like the idea of someone disliking their nose, breast, cheekbones, ears enough to voluntarily have themselves sliced and diced to look "better" and the way they "should" look.    I've always thought of it as a huge reflection on society and our ridiculous obsession with the current definition of beauty.  I won't go all feministy on everyone, just suffice it to say that I have never been a big cosmetic surgery fan.

But now, I have to say thank you to the throngs of people who have chosen plastic surgery over the last however many years.  Without them there would have been no one for the surgeons to practice on in order to hone their skills for my surgery  (Yes, I'm joking.  Yes, I am slightly hypocritical....oh shit is Anonymous372 going to nail me to the wall?!?!).  It is simply amazing the things plastic surgeons can do these days.  Just INSANE.

I have 6 more full days with these breasts I was born with (Ok, not born with.  That would have been an interesting labor and delivery story..... Growth hormones anyone??), the breasts God gave me, the breasts that are trying to kill me.  Fuckers.....

I met with the plastic surgeon yesterday and because I am curious and interested as all get out, I got to see all the junk that is going to be attached to me (or in me...ew) when I wake up on the 7th.  Oops, untrue statement; I didn't get to see the Alloderm, a "human tissue product."  Oh yeah (read as Kuzco from Emperor's New Groove.  For reference: http://www.youtube.com/watch?v=uT4ySwoh27Q&feature=endscreen&NR=1), it's made from dead people skin.  

All of this will be in or on me as I leave the hospital as the Bionic Woman!

My expanders.  They stick these hot-water-bottle-esque things under my chest muscle and fill them half way up with saline.  Every week for about 6 weeks, I will go into the doctor and get the new girls pumped up.  The weird spot on the expander, is the port.  A magnet is used to find the port under my skin and muscle.  Then a needle is shoved in there and I get inflated.  Like so:

 

Because they will be filling me up so quickly, it is supposed to be painful.  The goal is to get me pumped up before chemo starts to minimize the risk of infection.  Usually they prescribe Valium after each pectoral pump up session...... Not sure what they will do with a preggers... These things are hard; not super squishy like a boob.  But that means......no bra.....for most of 2013.  Oh yeah!

 

My lovely surgical drains.  That long straight bit will actually be IN my body to collect fluids; it is sutured into me.  I will have two on each side.  I'll pretty much look like this:

Except she has 5.  I will only have 4.  Oh 4 and a pain med goodie bag (but more on that later).  Yes these things actually dangle from my body like gross Beethoven dog drool.  But I bought some fancy (oh and so pricey) camis that have pockets inside to hold my blood juice boxes.  Sort of like this sexy number:

Yes, this woman clearly just had surgery...... I have been told that these things suck and I will hate them with the fury of 1,000 angry cancer patients.  All 4 will be stuck in me for at least a week when I hopefully will get to lose two of them.  And now onto my favorite new bodily gadget....

The pain pump. And I hear the sound of angels singing.  This bad boy goes directly into my surgical site on each side.  I can squeeze the little medicine thing and a local anesthetic goes directly to my battered chest (yes, I said LOCAL!!!!).  That means no affect on baby each time I press that thing.  I'll still be on other pain meds, but I still love that this is a local.

6 days and counting.  'Til the "icky stuff in Mommie's booby" is out of me and in the trash where it belongs.  In 6 days, I become the Bionic Woman.

The Light That Shines

Problem Solved.

I was thinking (as I was driving back from the eye doctor with fully dilated eye-balls) that I would come home to my computer and change my comment settings.  Basically making it so that no one could post anonymously anymore.  Tada!  Problem solved!

Except not.

I started this for ME.  An online journaly thing, for ME.  It was originally kept a complete secret.  Someone on Stillbirthday mentioned to me that she reads everything comment or post I wrote and sometimes felt the exact same way I was feeling.  That made me start telling people about the blog.  If one person in the world read one thing and it made her feel .01% better or understood or like less of a horrible person (because let's face it.  I don't pull punches.  If I feel something I let myself feel it and will say it here.  Even if it's jacked up), it was worth putting all my tender bits out there for the world to see.  I have always hid my squishy bits.  Held friends at an arm's length (cause it's safer!).  I am just now fully opening up to my friend, Natalie, of over 15 years!  I am just now letting people in.  So decided to let all of you in (SCARY) if I would maybe help one grieving mom feel like less of a crazy freak. (because we are a special brand of crazy...).

So no.  I will not change my comments settings.  If someone wants to post something and it's easier for them to do so anonymously then rock on my friend.  But if they are hurtful comments, I'm just going to be deleting them.  This is for ME, remember?

Anonymous361 (for some reason a numbered title is needed....), I don't have the slightest clue who you are and I don't care.  I'm done dissecting the garbage you have to say and trying to equate it to the people in my life.  People who have offered help but I didn't take (The Stickels??  No way), people who have lost babies (Eryn, Ericka, Amber, Rosie, Sarah, Leah, Bambi, Carolyne, Jenn, OMG this list is so long....), people who I have said mean comments around about those scarey, scarey children or preggos (Amber, Natalie. Leah, this list is probably long too)... ENOUGH.

I'm done.  I don't know a lot about God.  But I know He is kind.  After all I've been through (which He chose not to change), I know He would never talk to me in such a vicious manner.

Anyone still reading, please don't take this as the entire Christian populous because they are not all like this.  I know quite a few (Rachael, Natalie, Teresa, Amber, Rosie, Elsa, Angie, Michele) who are just kind, kind people.  They behave in a way their God would be proud of.

El Fin.  Off to chase my son.

The End of the Girls

Bilateral mastectomy has been scheduled for February 7th at 7:30am and it feels like the end. 

Like a countdown to.....something ending.  I'm preparing like a nutcase.  Making and freezing food for my family to eat, buying pillows for my recovery, trying to get my son's doctors appointments taken care of, getting him new glasses, rearranging my room for a hospital bed (maybe...?), cleaning the crap out of my house so no one else has to deal with it, stockpiling food and supplies.

I feel like I'm preparing for my death.  And in a sense I am.  I'm preparing for me not to be around anymore.  (Don't even get me started on the risks of general anesthesia....)  The fact of the matter is, I have NO idea what the next year holds for me in terms of ability to function.  I am counting on being unable to do much for the rest of 2013.... that feels like an eternity.  I am having a hard time seeing the light at the end of this tunnel.

I know it's not the end of everything (although, it is the end of "the girls").  I know it's the beginning.  But it's the beginning of something I don't want to do.  Something I am terrified of.  A fight I don't want any part in.  It's like the beginning of delivering my sleeping baby girl.  It's something I am being forced to do.  I don't want to, but it's inevitable.  And every moment sucks.  It is the beginning of awful. 

Though that doesn't seem really true either does it?  Losing my babies has been awful.  I've been living in awful.  But this time I'm getting a heads up.

"Heeeey.  Just so ya know.  The next year or so for you is going to be shit.  You're going to be sick, exhausted, and incapable of doing much.  Hopefully you don't completely miss out on the birth and growth of your baby and hopefully you get to see some of your beautiful son grow another year older.  Maybe you won't miss everything..."

I know I'm being pessimistic.  I know some people do well on chemotherapy.  I just can't imagine that a pregnant someone is going to do that awesome on chemotherapy or recovering from major surgery.  See?  No light at the end of my tunnel.  Just dark scariness.

I can't even think about my Baby Squiggles (that babe is always wiggling away when it's time for her close up).  This baby HAS to be okay because I don't think I can handle a-n-y m-o-r-e.

Will I ever stop crying?

My "chosen" treatment:

In about 3 weeks, I will be having a bilateral mastectomy.  My plastic surgeon will be there and will place expanders under my muscle tissue for my eventual reconstruction.  After I heal from having 2 bits of my woman-hood literally chopped off (approximately 4-8 weeks), I will begin a 12-week-round of chemotherapy.  Because of the type of medication, I have been told that I will lose my hair, I will be sick, and I will be exhausted.

After the first round of chemo is completed, I will have my baby  (yes, all of the previously mentioned treatment is while pregnant).  I don't know when exactly this will be.  My hopes is that we can get it close to 36 or 37 weeks for the baby's well being.  This baby will be born alive because there are no other choices.  I don't know how I will continue on if my Squiggles dies.  How can I fight cancer if my child dies?

After healing from delivery for 4 weeks.  I begin round 2 of chemotherapy, another 12 week stint.  After I finish this round of chemo, I should be able to get my reconstructive surgery although I will be on antibody injections for a full year.  For those of you playing along at home, that puts reconstruction around October or November. 

The realization is hitting me that I am utterly terrified of what is going to happen to me post surgery.  Mentally.  I fear that I am going to completely lose what is left of my mind.  That I will be thrown back into the pits of grief that I struggled and worked so hard to get through after my Riley died.  That hole is so hard to get out of.  I don't want to go in again.

I am trying to envision my time in the hospital.  What am I going to do?  Just not look down at my chest ever again??  That first time they unwrap me to check the incisions.....  Do I just look at the ceiling to avoid mental collapse?  I've looked and prayed at that ceiling before, prayed hard that Riley was fine and this was all just a crazy mistake.  I don't want to look at that ceiling again.  Praying to it doesn't help either.

At first I thought I would be fine in the hospital after mutilation, but now I'm wondering if I should be left alone.  Don't worry; I have no plans to slit my wrists with my IV needle (Squiggles takes care of that), but I just foresee the depression crashing in and crushing me under its hopeless weight.  I will certainly be unable to ask for help if I need it.

Will I ever stop crying?  Good thing about being in the hospital IV saline:  no dehydration when you cry like a crushed soul.

Boobies update

People want to be updated about my boobies.  They constantly want to know what I have learned during my daily excursions through hospitals and medical offices.  Telling everyone over and over is exhausting.  I want to tell you all, I do!  But I'm going to centralize it some so as not to lose my mind.

I met with a breast surgeon today.  She went ahead and ripped my rose colored glasses right off my face.  We still don't have any answer yet, no plan as to what step is next.  Not until I get my genetic counseling done and met with an oncologist.

But here it is:  If I wasn't pregnant, they could do a lumpectomy, radiate the hell out of me and on we would go (at least it would be an option).  But being pregnant kills most of your choices.  Without terminating the pregnancy, I am left with 2 options. 

1. full mastectomy of the cancer boobie. 
OR
2. chemo now while pregnant then maybe lumpectomy after the baby is born (this is ONLY if the oncologist says that I flat out need chemo at some point).

Oh, but there's a third option.....

I always like to make decisions based on statistics.  I love statistics, but in this case they are staggering and scare the crap out of me.  The genetic counselor will be testing me for something called BRACG.  If I am BRACG positive, I have a 60% chance of getting breast cancer again.  If I am BRACG negative, I will have a 1% chance of getting breast cancer again for each year I am alive.....  I'm 29....   That means that by the time I'm 80 I will have a 50% chance of getting breast cancer again. 

Flip a coin.  If it's heads, I don't get breast cancer again.  If it's tails, round #2!!

So, holy hell, what do you do to prevent me from getting cancer again?!?!? 

Chop 'em both off.  Even the healthy one.  That's it.  That's my only option to kill those awful statistics.

Even though my breasts are the only part of my body that I have liked for the majority of my life (excluding prepubescence...dur), that's not what kills me.  It's the breastfeeding.  I won't be able to breastfeed this baby.  It's crushing.  But this doctor made a good point while she held my hand as I cried about my boobies:

A formula fed baby with a healthy, alive mommie is better off than a breastfed baby with no mommie.

I haven't made any decisions yet.  Not until I get all the results and talk to the oncologist (Friday the 18th for those of you playing along in the game's "at home" version).  ...oh and talk more to my husband...

But I'm not so sure there is a decision to be made....

The next slap: cancer

One week after learning Baby B died, I was told I have breast cancer.

They can remove the tumor while you a pregnant. A nurse practitioner told me they may be able to use a local anesthetic just like they did when they did my biopsy (ps. I felt not a thing), then treat me later with radiation or.....chemo or something after I am healed from baby.

The medical people have been amazing (I have never said that before in my life). I have 4 medical offices communicating together without me at all. The surgeon's office actually called ME to make an appointment.

So I go to a breast surgeon on Tuesday and have heard from 3 sources that the doctor is AMAZING and very compassionate. I have been told I will love her. I will get my options risks and such from her and then we will make a plan. I think they have to wait til 2nd trimester to take the lump out (which is really close actually)

Mentally, I am up and down. I spent last weekend depressed about Baby B and was convinced Baby A had died too. I'm trying not to spend this weekend the same way, but it's up and down. I'm realizing I have been depressed for a couple weeks and can't fight back very much right now.

I am trying so hard to learn to accept help. I am already much better about this than I was years ago but still don't want to accept nice things from people. So if people offer, I am trying to take it.....even if I don't need it right now