Brain Surgery: One Year Later!!

A year ago today, I walked in to a Los Angeles hospital at 4:30 in the morning to have brain surgery. An actual craniotomy.  To remove an actual brain tumor.  Not the imaginary tumors that I used tell my friend Heather that I had every time I felt a headache or toothache.  But a real, actual tumor that wasn’t fake or funny.  I walked in with Matt and my parents, carrying a Frozen blanket and my stuffed dolphin, Squeaky. 

It’s both easy and hard to believe that this was a year ago.  Hard in that those days in the hospital feel like they just happened and are remembered very easily.  And the feeling of, “wait, it’s been a year and I am still healing and recovering?”  But easy in that this year has been filled with monumental change and enough emotion to feel a full and long passage of time.  I find myself sitting in quite a different life than I had 12 months ago.

As this anniversary approached, I spent more and more time thinking about everything that I went through. From the first appointment to check the hearing loss I’d started to notice, through the long recovery of brain surgery.  And I went through a lot. 

But honestly, you know what I’ve thought about the most?  And I’m not just saying this to sound good, or sweet, or selfless.  I genuinely mean this; that what hits me the most is what everyone did to help me.  I’m not gonna lie, this journey didn’t make me feel like I had a very good relationship with luck.  But what it has made me feel is a full-hearted, gigantic train wreck-strength gratitude and appreciation for my husband, my family and my friends.  My cats.  My home.  My cup severely runneth over.

My parents came out to LA several days early so that we could have an early Thanksgiving (as I would spend Thanksgiving Day in the hospital) and, wouldn’t you know it, that put them on the sidewalk right next to me when we were walking to pick up pie and I got the call from the adoption agency that Matt and I had been chosen by a birth mother.  That they were with me in that moment is nothing short of Magical.

Marlie sent me a blanket with Anna and Elsa from Frozen on it, which was literally with me every second I was in the hospital.  I refused to ever be away from it. I made the nurses include it when they changed my bedding.  Sister love is powerful.

My friends were angels.  A few days before surgery, Heather, Marci, Debby and Stephen (and Johanna in spirit) drove down to my home with a care basket of gifts to help keep me entertained and comfortable in the hospital, and healthy during my recovery.  Allison sent me a cozy care blanket in the mail - and this girl was in the middle of college midterms!!, yet ...still thought of me.  The night before surgery, Leah came down (I don’t live close to anyone, y’all) and loaned me her bag of good luck tokens that she had collected and been gifted during her many bicycle rides around the US and Canada.  These are SUPER special to her, and I can’t imagine how badly she would want to make sure they were never lost, but she loaned them to me, and I was holding them in the hospital bed right before they wheeled me into surgery.

On the day of surgery, I walked into the hospital at 4:30 in the morning and there in the lobby was Jen, with a giant good luck hug and gifts that would help me smile and laugh in recovery.  4:30 in the morning on a work day, you guys. 

Jim and Sabra let us borrow their van for nearly the entire length of my parents’ stay, so that my dad could be in a comfortable vehicle, and we could all travel together. This was not just generous but was a lifeline to get my parents to and from the hospital every day, and allowed them to be with Matt and I when I was admitted. 

Three days after a successful surgery, I was sent home.  Once I was settled, Kelly made me chocolate brownies and cake that Jeffrey drove all the way here from Encinitas and blended so that I could eat them as a milkshake.  He also went on a grocery outing with my dad to help stock up with some food. 

My mom cleaned my house, made my meals, kept track of my pills with Matt and helped me shower and comb my hair over a sensitive scar.  Every day my dad would walk with me to the lamp post at the end of the street, and back, as I regained my strength.  And we all watched Hallmark Christmas movies together. 

After 2 days at home, I began leaking cerebral fluid and my surgeon ordered me to the ER and back in for a spinal tap, lumbar drain and a miserable 6-day stay. I’d also started suffering some pretty bad facial paralysis on my left side.  My parents extended their trip without hesitation, and ended up staying for a month. My dad would help me with my menu at the hospital every morning, and when the food came he would cut everything in tiny pieces for me as it was hard to move my mouth.  When I was cleared to go home again, he drove alone from Redondo Beach to downtown LA to come pick me up and stopped by Handels for some well-earned ice cream on the way back. They were away from home for a month, in extremely scary circumstances, and they never complained.  Not once.  They did not budge.  They helped and loved without hesitation, as perfect parents do.

And then there’s Matt.  I don’t even know where to begin.  Except that I start crying just as I type this.  He was perfect.  He was endless in every way.  In his positivity and optimism, in his commitment to me.  Every day he got up, drove to the hospital to hug and comfort me, drove to work, drove back to the hospital and stayed until I fell asleep, then home to feed our cats and try to catch a few hours of sleep.  And just like my parents, he didn’t complain once.  I never wondered if he would show up, or if he would be there. 

My facial paralysis was extremely uncomfortable physically, and pretty damaging emotionally.  I could not blink my eye nor did my tear duct work.  The left side of my mouth completely drooped and I couldn’t eat easily or swallow liquid.  And what I couldn’t do the most…was smile.  One side up, one side down. And God bless my husband, he told me then and has told me every day since that I am beautiful.  That whatever damage remains is a sign of strength.  But it’s not just that he says it.  It’s that I know he means it.  He is the epitome of love.

And speaking of God blessing someone, I met God for the first time at St Vincent’s Hospital.  He sat with me when I was in between visitors one day, when I was crying from discomfort and fear.  He did not leave, and I know now that He was sitting there long before I felt Him.  Besides the addition of a certain baby Nicholas, my relationship with religion is the most evolving change since surgery. 

When I was laying on my back in the hospital bed, all I wanted was to go home.  I didn’t dream of an extravagant trip to Europe, or Hawaii, or fancy things I wanted to buy, or adventures I wanted to begin, or bucket list items I was going to attack.  I dreamt about the next times I’d be able to hang out with my friends.  And I just wanted to be home, with my husband and my kitties.  And that’s what I got.  My face is still crooked, and I can still only cry with one eye, and my scar still hurts.  But I am home.  And a year later, it’s still the thing I want most in life…to be healthy and at home with my husband, my son and my kitties.  And to endeavor to be the best mommy, wife, daughter, sister, cousin, aunt and friend that I possibly can.

Silly Snapdragons

One night, back in high school, Marlie and I were riding home from a volleyball game with my parents and my Grandma Eckelman.  I wouldn’t say that the road we were travelling on was a country road, but my friends in LA would certainly call it that.  It was dark, and we were sleepy.  We came upon a house near the road, with the lights of the first story turned on, glowing yellow into the street.  And as we pass the light, my Grandma says, “I always knew someone lived there!”

Her tone was such that a great mystery had just been solved! And yet, not.  Not who lived there, or what was going on inside.  But just that she’d had a hunch that someone lived there and now, indeed, she had proof.  I can still hear her jubilant voice!  And how we all burst out laughing, and continued to giggle all the way home.  To this day, Marlie and I will still pass a house at night with a light on and say, “I always knew someone lived there.”

She could be really silly.  She could say the most random little zingers.  And when she really felt a laugh, it was tremendous.  I can hear it now!  A joyful guffaw that I gladly inherited.  She could also be really strict, and manners were very important.  When I was a kid, I didn’t understand why I couldn’t take the dangling crystals off the fancy lamp and wear them as earrings, or open the door of the grandfather clock and poke the pendulum.  I wasn’t allowed to go into her bedroom and carelessly turn the rotary phone wheel 100 times or run laps through the guest room’s walk in closet.  I had to eat Wheaties.  And vegetables.  And marmalade on burnt toast.  As a kid, I thought this was all a tragedy.

But those aren’t the memories that stuck.  As I reflect on my grandma, upon her death earlier this week, what comes to mind are those times that Marlie and I would be playing in their basement and her little head would pop out of the stairwell and she’d say, sing-song, “Well, I figured I’d better come down since you must miss me.” We’d immediately go into “show off” mode, asking her to play us in ping pong or pool, or making her a full meal WITH milkshake from our costume jewelry restaurant.  She’d show us the tiny little wooden trinkets that hung on the wall by the antique school desks, or pull something new to play with out of the storage room.  Eventually she’d head back upstairs to watch Perry Mason or Murder, She Wrote and leave us happy as clams.

My strongest memories, however, came at the end of the visits.  In front of the house, a little walkway ran from the driveway to the front door, encircling a cute little garden.  And in the garden, a few little stones that led to a small bench, and snapdragons.  Always snapdragons.  And see, I know they couldn’t always have been there, and I know there must have been other plants and flowers.  But all my heart remembers are snapdragons.  The garden had little lights that you could flip on from inside the front door; and the sweet garden glowed like a magical wonderland.  Whenever we were leaving, Grandma would take time to walk with Marlie and I in wonderland, and make the snapdragons talk with her fingers.  They would tell stories of their different colors and how silly they were to be talking to little girls!  I can still see the glow of wonderland, hear the talking snapdragons and feel warm quiet air of Tyrone Drive.

I have a bucket of memories, but the garden wonderland rises to the top.  It always has, since I was a kid.  I never see a snapdragon without thinking of sitting with grandma on that little bench, and I always stop to make one talk.  And one day, when I have my own child, I will introduce them to the silly colorful snapdragons that talk to little boys and girls.

My you rest in peace, Grandma.  You will be remembered so fondly.  I hope you are enjoying your return to health, your return to happiness and your return to love. 

The Deafening Sound of Nothing

You know, I can track the length of my fertility battle back to a phone conversation in January of 2015.  My friend Jennifer and I were getting online to buy early bird tickets to Outside Lands in August.  I was all, “Let’s definitely get the tickets, but just a heads up I’ll probably be super pregnant by then, so I may need to sell mine.”  So confident!  So optimistic and excited! Even if it took me a couple tries to get pregnant, I would still be too far along to dance and run from stage to stage, so I was certain my festival days would hit the fritz.  But fuck it, I’ll buy the ticket JUST IN CASE.

I went to Outside Lands that year.  And you know what, I went the year after that as well.  And you know what, I could’ve gone this year too. 

Cause I’m still super NOT pregnant.  100%, A+, highly UN-pregnant.

How did this happen?  How have I wound up with nothing?  IVF #4 just ended with the deafening sound of emptiness.  We did not produce any viable embryos.  Nothing to send for testing.  Nothing to transfer.  Nothing to freeze.  Just, nothing.    And there is no sound more deafening in the world than nothingness. 

I can’t get my head around it, this nothingness.  I find myself thinking often about that phone call in early 2015.  I remember what it felt like to be so hopeful, to be so sure that it would work.  Calculating potential due dates with each insemination.  Taking notes on stroller types.  Printing out “Top 10 must read books for expecting moms.”  Making a “Pregnancy” bookmark folder with all of the online parenting resources I might need.  I think about it now and I don’t have the slightest idea how to reconcile that optimism with today’s results.  I am finding myself, more often than not, completely blank.

I constantly fight.  I fight off feeling stupid for thinking it would work so easily.  I fight Anger and Bitterness screaming at me that hard work doesn’t pay off.  I fight Jealousy pointing at all the babies and children that aren’t mine.  I fight a suffocating feeling of Failure and Inadequacy.  I fight the Sadness that wants to be alone with me, so we can listen to the nothingness in my head.  And I fight Perspective, who reminds me constantly that I am not alone, that many have it worse than I do, that I have so much to be thankful and grateful for...but to whom I can sometimes only reply that I just feeling mother fucking sad. 

Mostly, I am afraid that the emotional heaviness and anger that have crept in to my life have found a permanent home, and this is just who I am now.  That my enthusiastic, hopeful, optimistic heart has gone dark.  But I can’t let that happen.

So I fight, and sometimes I win. Sometimes I lose miserably.  But when I win, I know there is hope.  There are still options.  Still things to try.  I have the most amazing friends & family, a heart full of love, a happy home. I have a lot to fight for.  Even when I cry, I can still laugh at a picture of Hank** through the tears.  I feel a lot of hope in that.  And I wanted to share my feelings.  Because frankly, googling “how fertility treatment has changed you” wasn’t really yielding helpful results.  Because, really, doesn’t the Internet always just make you feel worse?  So this is where I stand now.  A bit beaten up.  Convincing myself I am not defeated, and searching for happy places to make me smile as I head to the plate for another chance.  I don’t even know if the pitcher will pitch to me.  But if they do, I swear a homerun is coming. 

**Follow Hank: @mybestfriendhank.  You will not regret it.

  

Whack-a Mole, Lunatic Edition

Where to start?

Hey people. Hi. Sooooo….guess I haven’t written in a while? (I sound like Olaf from “Frozen” when I read this to myself.  That makes sense to me, but probably only also to Marlie.  Well, it’s a sheepish tone, I’ll tell you that.)  “Hi Sven’s family, nice tooo meeeeeet youuuuuu.”

Anyway.

Hey, I’m no Hemingway.  Did you know that Hemingway used to write 500 words a day?  Or was it 5,000? Well it was a damn lot, I’ll tell you that, and it was 500 (or 5,000) more words than I’ve written since my last post.  And he still kept up a vigorous business of drinking through Paris streets and camping at the base of tall mountains.  Come on, man!  I digress.  I just mean to say, I’m aware that most writers…write.  Even when they have nothing to say.  Especially when!

So I’ve perfected the Art of Anti-Hemingwayism.  (aka “Not Writing”)  I kept waiting for THE GREAT UPDATE before writing, but I have to say, the whole Baby Battle has turned into a game of whack-a-mole, Lunatic edition. (That’s the edition where, just as you get the hang of whacking the moles, they add more holes – but now with baboons and blobfish and that spitting dinosaur from Jurassic Park that steal your mallet and just laugh at you with ugly animal faces). 

Except the blobfish.  He can’t laugh.  He just stares at me, blobbing.

So, my Anti-Hemingwayism can go the way of the dodo, and I’ll be a mature adult with perspective (it’s hard! <whine>) and say that, while I don’t have THE GREAT UPDATE, I do have AN update.  After almost 4 months since my last post, I’m still on IVF #3.  I had my Egg Retrieval right before Christmas, and after some testing, and re-testing, and waiting, I am left with ONE embryo who is frozen in happy lullaby while my body prepares to transfer it.  And my body is NOT BEHAVING. I’ve started, stopped and restarted a couple different hormone regimens and now, at 5 estrogen pills a day, I’ll just tell you that if my next appointment doesn’t show the right results I am going to HULK SMASH the exam room, wield the ultrasound wand like Don Quixote, take ALL the pink starburst in the office FOR MYSELF and throw the yellows and oranges at the nurses’ station. 

Wait.  Mature adult.  So yeah, I’m fucking tired.  And I am SO SICK OF WAITING.  I’m just sick of thinking about it.  Sick of talking about it. I’m sick of putting everything else on hold while I WAIT…while I try to steel myself to handle more unknowns and to be strong and optimistic, which feels like a full time, conscious, exhausting effort. This has become so all-encompassing.  My friends and family have been SO amazing, listening to me talk about this for over 2 years, I PROMISE when I eventually have a baby, they will not only be a superhero (no, really, this baby better be able to fly, or have x-ray vision, or create chocolate cake from thin air), but they will be so kind and loving and grateful to you all, who took care of their mama when she was trying to whack-a-dinosaur.

I’m just realizing that the blobfish would be the worst creature to put into whack-a-mole cause he doesn’t move.  He would just pop up, slowly and blobbily with his squishy nose, and when you whack him he just smooshes.  But I guess at this point the baboon stole my mallet anyway and Jurassic Park dinosaur paralyzed me with his spit, so I have to just watch Blobfish ooze onto the board.  See what I’m dealing with?

Love to you all!

Fertility warriors:

17 eggs retrieved

10 mature

7 fertilized

3 survived to Day 5 blast and sent for testing - AA, BA, BC (BA and BC were actually Day 6)

AA and BA: chromosomal abnormalities

BC: chromosomally sound, and frozen

Feel free to message me if curious about estrogen/progesterone cycles.