Part 2: Silver Linings

I last left you with a damn miracle: Sean and I found out in October that, despite reduced likelihood of pregnancy caused by cancer treatment coupled with less than supportive doctors, we are pregnant!

And the roller coaster began!

We found out about Baby Sultan just a few days before our 2 year wedding anniversary.  We enjoyed the blissed out can-everyone-tell-our-secret-? days before we let my brother Ethan and his wife Emily in on the news.  We had gone to their house for dinner and I wasn’t going to be drinking.  As Sean says, I was going to raise suspicions!  So we just let the cat out of the bag and we were excited to have someone to share the news with.

In hindsight, we could have gotten away with it as I had cut down drinking to almost none (still drinking beers to put one some more L-Bs!) in preparation of maybe getting pregnant (read The Impatient Woman’s Guide to Getting Pregnant, even if you think you might be interested one day or you just want to understand your cycle and perhaps go off the BCP, this book is great!).  But, mostly, we wanted to tell someone!  Well, everyone!  But there is a taboo on telling everyone too soon and I was medically and emotionally in that boat.

Part of me just wanted to say “fuck it” to the taboo.  I felt committed and sure of having you all be a part of every little step of my journey: many of you have been with me (us) since the beginning… since the horrible diagnosis in 2012, the surgery, chemo, radiation, the emotions, the anger, frustration, joy and more.  You were there when Sean proposed!  When I finished my last sessions.  When I begrudgingly took tamoxifen for 2 years.  When I started visiting the Seattle doctors and understanding where we stood with having a family.  How could I not tell you when I was finally pregnant and so soon after starting to try?!  I wanted you to share the elation with me!

But I was trying to be rational, grounded.  I was worried about inevitably letting you down.  I think I was protecting you.  But also I was worried about losing this thing I wanted so badly.  I got to live.  Do I get to have a family too?  Or was that the bargain I would have to accept?  I get to have my life but I don’t get to help create a new life.

I am now 6 months (25 weeks) pregnant!  And while I have been through major emotional lows, I have found my way through more emotional highs.  We are through most of the major fetal health milestones, though we did not tread lightly through those.  It would have been great to have you all there with me.  But I also know that there are some decisions that some people may not agree with; and there are some talks Sean and I had to have in preparation for this journey that would have been hard for a lot of people to be with us through.  This blog will give you a brief summary of what we went through.  I had thought it would be more detailed when I wrote part 1 but I now find myself not wanting to relive too much of the emotions involved in a lot of it.  However, I find great value in sharing my story and perspective on a topic (pregnancy) that practically every human will be a part of in some way at some point in their lives.

Do remember that this is just my (and Sean’s) story.  It is but one single interpretation of a gigantic topic that can go any myriad of ways.  No one way, and no one story, is right or wrong.

Before we go any further, it’s important to me that you understand that for Sean and I to bring a child into this world we wanted to ensure that this child would have the best possible life we could provide (I’m referring to health concerns for the most part here).  I could not every selfishly want a child so badly that I would sacrifice its quality of life.  Sean and I have both been through cancer.  His is a constant battle (skin cancer) that we face every annual dermatology visit.  Since his cancer is more common and can be more readily treated, it falls under the radar in some ways.  So basically our genetic contribution to a baby is: two humans with cancer in their backgrounds.  And while the exact nature of what, where or how cancer speaks to DNA and then (potentially? not at all?) passes on to a child is very much a gray area, we were hesitant to proceed without having a conversation (many, actually!) about how we would take on pregnancy, how we would make big decisions.

We both agreed that DNA testing for chromosome issues would be a must.  In fact, if I remember correctly, this conversation had begun in our early days of dating!  Sean likes to try and shock me with dramatic topics (see bath tub birthing conversation in month 2 of dating, ha; see selected baby names conversation within a day of previous conversation), but I like to, in turn, shock him with my poker face of ain’t-nothin’-gonna-throw-me-off!  An ideal match!

I am a lady of science and while I love mystery, converse with God, and treasure the value of karma, I wanted to utilize as much of science as I could; I would always rather be prepared with as much data as possible to make decisions.  I’m sure you could guess that from reading my blogs!  I mean, I have, after all, had CAT scans (pl), MRI scans, a PET scan, mammograms, a bone scan, x-rays, blood tests, pee tests, etc!  And a lot of these tests were me asking for them before my doctor would finally say, yes, you SHOULD have that PET scan!

Ah, so now you know where we stand and if you are still here you are either totally in or at least mildly curious enough to keep reading.  And for that I thank you!

Where were we?

October.  Pregnant (squeeeee!).  Not telling anyone.  Finally we get an appointment with our medical provider… for our first welcome-to-being-pregnant class!  WHAT?!  Don’t I need to pee on a stick and take a blood test for you doctors?  At this point it’s just an idea gleaned from two drug store pee stick tests!  You guys should really test me!  Sean and I were baffled that we were scheduled for this class before we even met with a doctor to confirm our child’s cellular existence!

By the time we estimated the baby was 8 weeks (I’m a total nerd, I have a pregnancy calendar, our conception was probably 9/25… yes, I TOTALLY track these things!  And now you can’t un-know that.  Hehe sorry!), we went in for our first prenatal visit (a tortuous 2 weeks after the aforementioned pee tests)… and literally the first time we would find out if we were really actually pregnant.  Or just plain crazy!

And there it was, right on the ultrasound screen: our little gummy bear shaped Baby Sultan!  Would you be surprised if I said we both teared up a bit?!  We totally did.  When you want something but don’t think you can have it–or deserve it–and then it happens?  Why, it’s a fucking miracle.  I appreciate this journey every day, even when I feel like blah, even with everything we went through before and since.  It just takes my breath away.  Up until that point, and even for a while after, I was just thinking my one positive mantra: at least we know I CAN get pregnant; if anything happens, at least we have that.  But seeing our kid on the screen took us to a whole new–still cautious–level!

IMG_3053

We got the official packet, started scheduling appointments, told parents and family our good news.  We started researching things I should eat and things I can’t eat (dear ahi sushi, I really miss you; dear turkey sandwiches, I am coming for you in a few months, you stand NO chance!  dear soft cheeses… oh SOFT CHEESES, WHY DO YOU HAVE TO BE SO GOOD AND SO OFF LIMITS????!!!).  Sean started cooking me salmon, spinach, steak and every other little thing I was craving (have I told you my husband is a saint because he can COOK and CLEANS?!!  I am totally keeping him!).

And then we went in for our genetic blood test.  And life fell apart.

They had a new test (Progenity) that is more extensive and not part of the norm.  But they offered and we said yes of course.  Much like most first trimester blood tests, it looks at my blood–where the baby’s blood is also mixed in–and checks for chromosome anomalies (13, 18, 21 and X and Y).  We did not want to know the sex so while they tested for X and Y and subsequently got the baby’s sex, we did not look at that info on my chart.  What stopped my heart was the finding of extra chromosome 13 fragments.  Don’t google that one.  It’s severe system deformity in almost every part of the body IF the fetus even makes it to full term.

The science behind this testing is complicated to say the least.  But the gist of it is this: extra chromosome fragments of any listed above (13, 18, 21, X, Y) is a warning sign for more tests to be done.  That’s what the doctors assume all rational pregnant woman will think (a rational pregnant woman?  NO, I have NEVER MET ONE!).  Anyway, I shook my fist at the sky and balled in my husband’s arms and cursed the fates for never cutting me a break.  Then I bucked up and asked the Doc: ok, what do we do from here?  How do we get more answers?

And here is where my child is totally my child!  A few weeks after the blood test, we had to do a CVS (chronic villus sampling) to test the placenta for DNA fragments.  That means a large needle goes through my abdomen into my womb while the nurse does ultrasound so the doctor (who was AWESOME by the way!) tries to not poke the human growing inside me.  Findings?  UGH.  More bad news: there was extra chromosome 13 in the placenta.  WHAT THE FUUUUC*****?!?  More tears, more bottom out, more scrape me back up off the floor.  Ok, Doc, what’s NEXT?  Amniocentesis.  The final set of answers.  Like I said: my kid.  Likes medical tests, wants the whole smorgasbord!

Oh and somewhere between CVS and amnio?  An ultrasound with a spot on the brain as a marker for chromosome 18 anomalies, and maybe something for 21 in the heart?  I can’t remember all the details.  All I remember thinking was SERIOUSLY?  Is this a joke?!  And the doctor reading the results actually said, well, at least your ultrasound doesn’t CONFIRM anomalies for chromosome 13.  Ah, yes, the silver lining for any mother: your child might have a little of every major chromosome problem but not a lot of ONE major GENETIC ANOMALY!  In all reality, though, she was totally right and intellectually I understood what she was getting at: the ultrasound, by spreading it out over multiple markers for different things, was more likely to confirm NO problems than ALL problems; a marker for chromosome 13 only would have been far worse.  Plus, Baby Sultan looked good in form and function on ultrasound.  We even got a thumbs up at one point!  Our kid is so cool!

IMG_3055

And amnio?  Another needle in the abdomen, same Dr, same process, needle in amniotic fluid though which tests actual cells shed by the baby.  This makes it the best because we are getting the kid’s actual DNA!  Will it have extra chromosomes, fragments or full third copies?

Well, I had to wait.

For a few weeks.

There were early results.

That are not reliable.

Those results were clear of issues.

Phew,

But then we had to wait some more.

And wait.

What was two weeks felt like 1000 years.

Of waiting.

Did you know we had to wait?

For what, Serena?  I forgot what we were talking about.

Oh, sorry: life-and-death, are-you-fucking-serious, universe test results.

That’s what we waited for.

For

Like

Ever

Then…

The call.

From the genetic counselor.

ALL CLEAR!  No extra chromosomes!  THANK YOU THANK YOU THANK YOU!

Phew.  Dodged a bullet.  Dodged potentially awful decisions.  The fact that CVS came back with some questionable DNA will mean a high-risk pregnancy for my third trimester because of a potentially unstable placenta.  However, a most recent ultrasound showed a very healthy and good-looking placenta!  Baby continues to have a good heart beat, check ups are good, we are moving forward happy and healthy and away from this first trimester trauma and anxiety.  2016 brought us into a happier place with our pregnancy.  A place we worked hard to get to.  A place we earned the really super incredibly hard way!

We could have said no to all of these tests.  I would have experienced far fewer emotional downs.  But I would have spent my pregnancy wondering.  And, honestly?  I don’t regret a moment of it.  Yeah, it was shitty.  Super shitty.  But the decisions Sean and I made were 100% what we wanted and needed. I trust in the medical community more than I don’t trust it, it did save my life after all.  And while we may have gotten a lot of “false positives” along our journey, it worked out.  Had we not tested, I could have been in for a very harsh and surprising miscarriage if our child had trisomy 13.  Any number of what ifs could have been in there.  I shudder to think about it all.  There still are tons of what ifs left in this pregnancy, birth and in raising a child!  It’s a total roll of the dice.  I’m happy to have had access to these tests and answers along this part of my pregnancy.  I’m happy we said yes to it all.

And weirdly I’m happy to have had cancer.  OK, in case the universe is paying attention and suddenly giving into what I want, I should clarify: I’m happy to have had the experience of cancer but not the actual cancer part.  It gave me the courage to talk to doctors and tell them assertively what I want and need.  It made me comfortable with getting poked and prodded and trusting the process to some extent (not too little and not too much).

Sean and I have relaxed a lot since this experience.  We are discussing names, looking at baby gear, eating, gardening, showering our dogs with attention, looking forward to spring in the Pacific Northwest.  We are planning a future that includes a child, free of chromosomal issues.  We know that this journey is still going to be tough, there will be sadness and pain, ups and downs, unexpected surprises both good and bad.  But mostly, it will be amazing.  We know this because it has been amazing already.  Despite all of the total shit I just mentioned above, I actually had a hard time recalling every detail.  When I wrote part 1, I was in it.  I was fully living the shitty part and trying to just get out the hey-we’re-pregnant! part.  As humans, we have an amazing opportunity to take the shittiest stuff and box it away in our memories; it goes in the reminders section of our minds and we can take the energy involved in sustaining the negative emotions associated to it and reapply that to new experiences while holding on to a very light recollection of the terrible-awfuls.  Those stay to add to our cumulative knowledge: hey, just a reminder, there was some shitty stuff in your life at one time, keep your guard up just a little.  And my more recent happy memories?  Ah, well, that would be the constant kicks, wiggles and jabs by a very active Baby Sultan!

IMG_3050

So where do we go from here?

We move on, we move forward.  Like that commercial says: we look towards all the positive things coming and we keep in the back of our minds the notion that there may be some bumps along the way, bumps we can’t see coming.  But we stay positive in the journey forth!  No matter what takes us down, the answer is always–is only–move forward, move on and do it with a smile… or a smirk if you’re feeling extra precocious!  Fuck cancer, fuck genetic anomalies, fuck the bumps that get in the way.  Embrace the husband, the parents, the friends, the family… the unborn child.  Cultivate relationships.  Help others.  Seek new experiences.  Live in the moment.  Do what makes you happy.

For life is short but sweet for certain 🙂

In this moment of humble gratitude, I would also like to ask for a favor!  It’s hard for me to ask for help and so many of you have offered so much of yourselves already: friendship, kind words, cards, flowers, gifts, etc and I thank you a thousand times for getting me through my cancer experience.  I truly believe in the power of community ESPECIALLY because of my blog and you all keeping up and reaching out to me.  I would not have survived without you!

Sean and I have decided to not have a formal baby shower per the usual protocol.  It would be nearly impossible for us to pick one place to get everyone we cherish together as we have friends and family dispersed far and wide from New England to Chicago to Maui (the end result of a nomadic life: moving around and ending up far from “home”;a life we love and appreciate none the less!).  Instead, we are asking for help with Baby Sultan!  Call it a “Baby Shower via Blog”?!  Yes?  No?  It’s a working title!

While we are registered for some of the usual necessities at Amazon (searchable under Sean and/or Serena Sultan) and at Baby List (http://babyli.st/serena-sultan but also searchable under our names) for more unique items (Etsy items, specific web sites or hard to find items), we are also looking for any hand-me-downs you can pass on, especially books!  I hope for Baby Sultan to have an extensive library and if you have any gently used books to pass on, we would love them!  My list of books selected for Baby on Amazon is limited and I’m surely missing some good ones.

To make it easier, you can skip a card if you want!  This kid is going to be an environmentalist and will quickly learn the power of scrap paper!  Feel free to dash off a love note to us on an empty used envelope: bonus points for uniquely chosen scrap paper!!  Of course I will be reading any love notes, texts, posts, emails, book inscriptions, etc to the bambino.

Lastly, I have no idea what I’m doing!  If you see anything on there that’s no good, or you have a gently used item that will do the trick, help me!!!  Help us!  Help Baby!  Send said item or let me know a better deal or trick.  The amount of stuff out there for tiny humans is astonishing!  Ahhhh.  I’m also trying to be frugal and rational: I don’t think I want a lifetime supply of Pampers just yet… maybe we need to try a few things with said unborn wiggling human child before we commit to a brand/item/product/thing in 12 colors.  What if our kid just likes to play with sticks?  Or run around naked?  Who knows, this child-rearing thing is a total crap-shoot, isn’t it?!  (That’s really the secret to parenting!  I think I’m onto something here!).

IMG_3056

Well friends and family, thank you.  Thank you for riding through this journey with me.  I never would have thought back in March 2012 when I got the worst news of my life that I would one day be here: experiencing the best time of my life, getting better every year.  I am truly thankful every day for Sean, family, friends, my dogs, Baby and life.  Sometimes shitty things happen (recently it was Admiral’s tooth cracked and our car got side-swiped) and I just look up and say, “Universe, are you KIDDING me?!  ENOUGH ALREADY you [expletive expletive expletive]!” (look, mom, I kept it clean… ish!).  But mostly life is pretty fucking amazing (shit, mom, sorry, can’t teach an old dog new tricks… 100% of the time!).

Here’s a song that Sean heard on the radio for the first time a few months ago.  It came just when we really needed it.  (Baby is kicking as I listen to this now… so blessed!)

Boob-gate 2012

What a whirlwind!

First of all: mahalo nui loa, thank you big time.

You have all followed the rules and found your own way to get through this with me.  I have received countless texts, emails, phone calls, Facebook posts, tags, blog posts and even a few hints at snail mail to come.  Wow.  Just wow.  Thank you from the bottom of my heart, you don’t know how much it means to me.  I didn’t realize how far and wide the circle and waves reached.

I am not at all the person that puts myself out there.  I prefer to be private.  If I was a celebrity, you would see more pictures of my hand in OK magazine than my face, and the paparazzi would be trying to dig dirt on me but I would be changing my cell phone number and posting only pictures of my dog.  I’d also be the one with the dirty mouth and lawsuits against Star mag.

But in this situation, I had to get a lot of intense information out fast, far and correctly so I decided to do a personality u-turn, rip off the band-aid and blog it.  Everyone has a blog these days anyway!  Word spreads like wildfire with technology; and between the combination of technology and this generation of “experience everything everywhere with every person you can find,” my circle of friends and family is big and international (hey you Aussies and Canucks out there!).

I wanted this to be my words, and not so much the grapevine and the “hey, did you hear?”

And mostly, I wanted Sean, my parents and my brothers to have a way to share the burden.  Really, we’re all sharing the burden.  And I feel lighter by it!  This is the place we go when even words are too difficult to speak.  When you don’t know what’s going on and you’re not sure if you should ask.  When I cannot vocalize all the shit that goes through my head and all the emotions that go through my heart, we come here.  You read it, hopefully laugh, sometimes you cry, you share; you keep living.

When the blog idea became part of the cancer plan, I googled (where else would we start our research in this day and age?!) where I would start my site (WordPress came up first and I liked that it didn’t use the word blog in it’s site address), and signed up and stared at–duh–the start page.

Big problem.  What the hell was I gonna call it?  “Serena’s cancer”?  Boring.  “Cancer journey from Maui?”  Ooh, tropical but boring.  “My boob harbors a fugitive”?  Haha, but not appropriate.  This was not an easy task to come up with a title (or a TIT-le if you’re feeling the need for corny).

And it finally hit me.  I’m 28.  Cancer has been in my reality, my non-ignorant world for six days.  Six days of 28 years.  F that!  That C word ain’t touching my title, because I don’t plan on keeping it or ruling my life by it.  It is what made me start writing but it’s not going to be the only thing I have to say.

But what would I rule my life by?  What have I ruled my life by?  What will I always tell you to rule your life by?

Obviously, read the title, people.  Pursue with Courage!

Are you going to read this blog with courage because you might throw up at the thought of someone you know, someone my age, someone your child knows, etc having breast cancer?  Are you closing your computer and contemplating your life and morality with a little courage?  Are you calling your parents/siblings/friends from long ago and putting aside old issues with a little courage because your perspective on what’s really important just changed?  Will you realize that time is precious, and that relationships and being our best selves are all we have and that waiting on that job to come to you, or the other person to start the conversation is a waste of your innate courage?  You damn well better!  Get of your butt, put on your big person pants, go to your dirty laundry basket and dig around for your ball of courage, dust it off, shine it and hackey sack that thing around!

And just in case I said that word so many times it has lost its meaning, here’s a little lesson:

cour·age

noun
1. The quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.
2. Obsolete . the heart as the source of emotion.
Ok, ok, you can keep a little fear.  But only for motivation.  Like when I’m fearful of spiders in my shower, I use it as motivation to wash them down the drain and recognize that it was a courageous effort.  Hey, don’t fault me.  I love nature, I love bugs but if you’re in my shower, you crossed the line.
Tomorrow is surgery day.  I’ve been assured that they will not need to take too much out (I have little 32Bs, there’s not a lot for removal so those cancer cells had better have stayed local and small) and that I will be headed home after.  I’ve got a party bus of four coming for support: Sean, Mom and Dad and Ash.  We’ll be going in at 8am HAWAII time (if you call me at 8am east coast time, we won’t be friends anymore; Sean will tell you how much I AM NOT a morning person, especially a 2am morning person!) but my appointment time is on island time; meaning, whenever.  You can call my mom (Lauren) or look for Ash’s post or wait for mine.  They told me they didn’t want me to stagger out of the hospital so I expect to be walking in full consciousness by the time I leave!  And I can type with my left hand (my right boob is the culprit, there, now you know which boob to blame–and I had a clean mammogram on Wednesday so no other tumors in the boobal region) so I will update when I’m sober (yeah, cancer will lead me to hardcore drug usage of mild pain killers, watch out).
And as I gear up for surgery, Mr. Michael Ray, a friend and coworker is recovering nicely from brain surgery!  He had a cyst that pressed on his cerebellum and built up enough pressure that by the time he had surgery, it burst.  But the outcome is good and healthy!  We’re thinking we may have to blame work for our issues… 🙂