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!

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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!

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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!

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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!).

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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!)

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‘Tis the Season!

Aloha friends, family, loved ones, associates, people of all shapes and sizes!

It’s the season of love and family, food and gifts, and the season of thanks and new beginnings.  It has been a rocky road, this 2012, but it’s ending in an up-swing.  And for that I thank you all.

First and foremost: Santa has already made good on my request… I have a head of hair, new eyelashes and new brows growing in!  I look less like an alien (just less, right brothers?!); and also less “sick.”  My hair grows so slow, and I should know… I stare at it a lot in the bathroom mirror willing it to be long again.  I shall just have to see what Miss Anne Hathaway does to hers as she grows it out since she is a few inches ahead of me.  So trendy, the styles to come!

I also found another famous twin with my hair style and glasses… Christoph Waltz from Django promoting his movie on Live with Kelly and Michael!

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I got a new tattoo (my second real one… it’s a lot more common 1) “these days”, and 2) in Hawaii where everyone runs around half-naked and covered in colorful, usually meaningful, art work).  Mine is a key (to Sean’s heart… he has a locked up heart tattoo) with a whale tail (a Hawaiian humpback of course!) surrounded by a pink ribbon.  It’s on my wrist where I can cover it for work.  But if I don’t have to, I leave it out.  I’ve gone back to work on the boats and between the tattoo and the new hair, I have had some questions from some very curious women (so far it’s always been women, the observant sisterhood they tend to be).  I had someone outright ask, “What kind of cancer?” and later another woman said, “Ah, I saw your tattoo…” and I even got, “So, what’s the story behind your hair?”

All of these questions are just fine by me because isn’t this cancer something we can all relate to and should be talking about more?  I find a lot of women that ask have either had some kind of cancer themselves or have been a care-taker.  The woman that asked about my tattoo was on the boat for a photo safari with her thirteen year old son who had been battling leukemia–mainly via chemo–for 3 and 1/2 years.  He got the clean bill of health blessing and so his family brought him to Maui for his first real vacation since he’s been diagnosed.  I may meet thousands of people in my line of work (tourism) and everyone has a story.  It’s what we’re here for, this living thing!

I completed radiation in mid-December and have been dealing with the after-effects of that.  Basically, imagine the worst sunburn you’ve ever had, on the softer skin of, say, your armpit.  Now imagine sitting in the sun all day for five straight days after that without wearing sunscreen.  That’s kind of how it works, or at least you can imagine how skin looks and feels after that!  The actual radiation zaps are quick and invisible; much of the redness, irritation and itchiness comes later.  Mine was deemed red enough to warrant a prescription for burn cream.  I hug with my left arm only these days.  And it is healing and fading.

I mentioned earlier that I am back to work, I am.  I also juggle unemployment insurance and work, at least through the end of December.  I started back at the Ritz-Carlton Kapalua as a naturalist at the Ambassadors of the Environment Program (tomorrow is my first “big” day) and have been nannying some.  I hope to be back full time to work in January, spread between my multiple jobs; and remembering to take days off.  I do function best with my calendar in hand and staying busy.

Sean and I are starting to think about an official vacation in May or June or July.  I haven’t been “home” to Massachusetts and New Hampshire in three years and I’ve never been to Chicago (where he is from).  Ah, it sounds so nice.  Even though we live in paradise–Maui–we still need to take vacations!

Chemo continues on through August, once every three weeks for a light dose of “easy stuff.”  I also have in my possession the drug Tamoxifen.  A drug that I have yet to start since it will give me the lovely side effects of hot flashes, night sweats, and insomnia and can be most difficult for the first three months.  My goal is just that: make it through the first three months and then reassess.  Ultimately, I need to take it for five years (five years of hot flashes starting at age 29?  Tell me, ladies, is that fair?!  I would still not, then, be excused from hot flashes later in life; unfortunately, there’s no “quota” that I can finish early!).  Research shows that 2 years of this drug is great for cancer-free survival; 5 years is awesome; and ten years is no different survivorship-wise than five.  I’ll take five over ten any day!

I’m also, technically, “cured.”  I’m set free from the majority of treatment and on to monitoring and life.  I will get a blood test soon to make sure my body is bouncing back from chemo and radiation.  And more tests eventually to keep an eye on things, making sure those little cancer cells don’t pop up somewhere new.

Most importantly, Sean and I celebrated our engagement at a party thrown by our awesome friends, Ashleigh and Thomas and Gene and Leigh.  We had so many wonderful people come and share in delicious food, lots of wine and say such beautiful things.  It was an emotional time but probably one of those nights that will stand out for the rest of my life, not just because of the significance of the event but because after all I and we have been through, life still felt “normal,” and normal in the best sense that word can be used: life was moving onward and upward with hundreds of hands holding us and pushing us up.

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