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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Part 1 of a 2 part series: Conception-alizing!

Excuse me while I dust this blog off and remember how my site works!  I am clearly out of practice.

The urge to write comes distinctly with a lack of sleep and thoughts of Facebook promises.  There is much to say and a lot of it will be hard.  For me and for you.

When I started this blog so long ago, it was easy to jump right in because so many of you had been there from before the beginning.  Since moving to Seattle and starting a new chapter in my life, I have been putting down a warning before each blog.  You really need to be prepared before you read these things.  This one especially.  And this will probably be the last warning I feel the need to issue.

The thoughts I express here are mine and mine alone.  I speak for no one else, in total seriousness at least.  I am one person with unique experiences that have shaped me into the person I am with the thoughts, feelings, emotions and beliefs that I have.  Try to avoid judgement; try instead to open your heart to understanding.  And remember that at the end of the day, for every person on this planet, there is a unique life experience that shapes who we are and who we will become.  Thanks.

Now, where did I last leave you?

Ah, yes, my constant array of mostly male doctors telling me I WILL DIE if I try to have a child!

Well, I shut them up.

I’m not sure if it’s a dude versus lady thing to put personal survival against procreation.  Or if it’s simply doctors’ code to do everything–and say anything–to get your patient to survive.  Really, it doesn’t matter.  What it comes down to is that I have told many doctors since I started this cancer treatment journey that it is vitally important to me to preserve the chance to have children.  Or at least a child.  And that I will pursue that plan as far as I can.  And I had expected my doctors to really listen to me.  Many times, they did not.  You really have to be your own advocate when it comes to your health and your life.

And how many doctors tried to steer me away from pregnancy?  “You could die if you try to have children.”  Yes, and I could die trying to cross a street.  I could die from a drunk driver.  I could die from lightening striking.  “Do you want your husband to have to raise this child alone?”  Well, if your saying it’s cause I died then yes.  He’s an amazing man.  That’s why I married him.  He can totally raise a child on his own.  Plus, we have family and friends to help.  I’d rather not be dead but if you insist on playing this card and assuming I haven’t considered my own death (every single day of my life since you all told me I have cancer at 28 with no history in my family and no place to presume where it came from), then, yes, my husband is more than capable of raising our child on his own.  He’d be so cute in a baby bjorn!

Don’t you know I’m exactly the kind of person that when you tell me no, I want what I want even more?

I went in to the fertility doctor in June and I told him: here’s the plan, this baby thing is happening.  I’m pretty sure he sighed in relief.  I believe on some levels that the doctors just wanted me to make the decision 100% on my own.

I was already off tamoxifen and had been since March as we had been doing some testing to see what my egg supply looked like (it looked like the supply of someone at 41, so kinda shitty but not impossible; more like: this needs to happen sooner than later… chuck the 5 year plan out the window!).  I checked in with my oncologist and had one last CT Scan (for now) to check everything.  The Docs gave me 6 months to make it happen.  If I’m not pregnant in 6 months then we have bigger problems.  At some point I could try a medication to ensure a higher number of eggs become available during ovulation but, as previously mentioned, these were my only options for me to conceive a child of my own DNA.  Egg harvesting requires intense doses of hormones, which is like crack to my addict known as cancer (that is, if there are any lone cancer cells still cruising planet Serena, and with cancer you never can be sure…)

So out with my IUD in July.  And wow, to be at that place with oh-my-gosh-we-could-get-pregnant-at-any-moment-holy-shit-are-we-adults-adulting-for-real?!  It was a pretty cool and unique feeling!

As an avid reader and a person who likes to be prepared, I naturally found The Impatient Women’s Guide to Getting Pregnant on dear Amazon.  (http://impatientwoman.com) and started reading it cover to cover.  I stopped drinking alcohol and coffee except for a rare one here and there (which, if you know Sean and I, we don’t really drink that much, we’re an old married couple!).  In another book, I read that stopping those 2 things can help with polycystic ovarian syndrome, which at one point was a possible medical concern for me (check out the book Making Babies: A Proven 3-Month Program for Maximum Fertility if you want to learn more; I ordered this book but as you will see soon, I didn’t get very far into it!).

I improved my diet and started taking prenatal vitamins to prepare.  I still drank some solid beers to keep putting on weight.  I started using an app that tracked my cycle (Period Calendar but on your phone it shows incognito as plain old “PC,” discreet).  The book had all sorts of temperature-taking options and additional pee testing that I decided to skip with the intention to revisit if I got real frustrated.  It should be noted that while I was diving way too intensely into this plan, I was driving Sean crazy!  I had to scale back and have a reality check a few times to keep the balance.  He is a patient man!

July was a bust because I was still getting used to the new norm after my IUD was out.  August was travel and time away from hubby.  My cycle was all over the place and difficult to track.  44 days, WTF?  My body has always had a hard time with this aspect.  I had another reality check after a negative pregnancy test in August: maybe 6 months will be a year.  Maybe my doctor is comfortable with 6 months but I want to try for longer.  Ok, self, just give it a few more months then we’ll try that medication.

In September, I swear things were different.  I felt something change in me.  I took a pregnancy test October 4, exactly 2 weeks after my calendar said it was go time.  The test was negative.  I was disappointed but accepted it and moved on.  We went to an old school concert with friends, started to gear up for out 2nd wedding anniversary and focused on life and the next month.

Then in mid October, I had a week where after a usual amount of dinner I felt ridiculously full!  Weird.  I was looking at my belly and saying “what are you doing in there?”  I just felt, different.  I stocked up on pee-tests (we just got closer: it’s all pee all the time from here on out).  And then one day (Saturday, October 24th), I woke up and before work I just decided to pee on a stick.

And wouldn’t you know it: it turned PLUS right away!  Like every test before took the full 3 minutes.  But when you’re pregnant, that thing lights up like a Christmas tree!  It practically screams PLUUUUSSS!!!   PREGNANT!  YOU ARE WITH CHILD!!!!!!

As the Impatient Women’s Guide notes, to keep things simple for husband, get a pregnancy test that literally has results of “pregnant” or “not pregnant.”  After I showed Sean the first +/- test, we were both like, ok, um, what?  Let’s do that again.  So water, OJ, water, water, water.  And test number 2?  After 1 minute: PREGNANT!  We stared at each other disbelief and excitement for a few moments, just enjoying what we had actually accomplished!

Holy shit: it’s on!  Baby Sultan has entered the womb!

*Disclaimer: Sorry for the abrupt ending and incomplete story!  I know you were expecting more.  I just needed to get back on the horse and get this started.  I will continue our story in the next part.  The last three months have felt like we have lived a lifetime and I don’t have the emotional patience to get it all out right now.  I also want to preserve as separate this moment of intense joy and happiness and success before we faced the realities of pregnancy, which are still amazing but also filled with worry and fear at keeping this being that is now our whole world safe.  We are also in the middle of crazy scary genetic testing that has been putting us through the ringer and will require a lot of my brain power to both recollect all of the details and then explain it all properly.

 

 

 

 

 

Decisions, Decisions, Decisions

Sean and I are standing on the edge of a precipice.  And we have three options: we can step back and walk away; we can jump and crash and burn; or we can jump and hope and maybe–just maybe–take flight.

What I am referring to, of course, is the very complicated decision to try to have a family.  Or to not.

Our situation is common among young couples; our circumstances and actual options are not at all common.  Our decision has to be carefully determined and planned.  It could never just happen accidentally or on a whim.  Whatever we decide will be fraught with heartache.  And we are OK with all of that.

Let me explain why.

Let me also say at this point that if you choose to read further–and especially if you are new!–there are things you will learn about me that you can’t unlearn.  There is a strong possibility you will see me in a different way.  I am me in my most open form here.  This may not be what you are used to depending on the way in which you interact with me.  I am a rather protected person and I rock a good poker face (probably except, oddly, during actual poker).  And this is mostly because this is where I feel most confident and comfortable expressing myself; not because I can hide behind a computer screen.  I just write better than I talk.  The shit I write here is never anything I can stuff away nor walk away from; I live it every day.

I also swear a lot.  Like, a lot.

So if you’re easily offended then now’s the time to stop reading.

No, really, you can stop.

Are you sure?

This might be a psychology experiment.

Can’t put it down, huh?

Okay, you’re committed…

I also want to express that what I believe and feel and what Sean believes and feels are not at all viewpoints towards how others live their lives.  These are decisions and viewpoints we have made for ourselves for a variety of reasons, some I can explain and some I cannot.  So if you find yourself getting to a point where you’re thinking, “Ugh, so close minded” or “but my situation…” then, well, you’re reading for the wrong reasons.  All I can tell you is my story, our story.  Take it with a grain of salt.  I have yet to find the manual on life or the manual on cancer (can I borrow your copy?  What?!  You didn’t get one either?!  Shiiiit).  Life seems to be more like a Choose Your Own Adventure story.  We’re all just wingin’ it.

To catch you up on a long story: I had breast cancer in 2012.  Surgery, surgery, surgery, chemotherapy, radiation treatment, “adjuvant therapy” (fucking Doctor terminology: this means drugs, meds, scrips, and probably BS and feeling shitty for an unknown outcome).  As a science nerd, I have quickly learned that Doctors haven’t got it figured out–and, yeah, it’s not fair for us to think they do but when you get sick with something shitty like cancer, you just want all questions answered and the path to be clear and obvious (do I really need to think about decisions and weigh them all?  Life.  I just choose that so do what you need to for that to stay happening).  So they don’t exactly know what to do with me.  Maybe I was cancer-free with surgery.  But they weren’t sure.  So I had all that additional stuff, chemo and radiation and the drugs.  It all sucked.  And every day I got to think about death.  And guess what?  Even though it’s all pretty much over and it started 3 years ago, I still get to think about death every day!  It’s “gone” but since it’s cancer it can always come “back,” (or it’s currently cold chillin’ in my body waiting for the right environment to start up again.  Like the shittiest house guest you can imagine!).  So, yeah, there’s that.

And I’m OK with all of that.  I know it sounds like I’m not but I’m as OK with it as possible!  The thing that really crushes me is my Doctors’ responses.  Some of them are cool but a whole lot of them are quite the negative nancies!  Shit, dude, I have/had CANCER, tell me something good for once.  They are very doom and gloom.  Do NOT get your hopes up.  Sometimes I think they need smile therapy.  Or new jobs.  And this is where I am going to be really specific: they are rather AGAINST any possibility of Sean and I having a baby (the kind of baby that involves me getting pregnant).

Woah, Serena, did we just go there?

Yeah, we did and there’s more.

Seat belts on, team.

I think you need to know something important.  I am a biologist.  That means that I know–believe? whatever, leave your opinions at the door–that the majority of living things need three things for their species to continue: food, shelter and progeny (that means babies, you don’t have to google it).  Ah, ruminate on that.

For me, that means I want to have kids.  And even that desire in me is complicated.  I never imagined I would have to decide at this age (I will be 32 in a few days); I really thought, naively, that I would have time to think about it and one day, poof!  I would just get pregnant when I felt the mommy urge.  HA!  I always thought I would have kids.  It was just a given, something I didn’t think too deeply on.  I’m good with kids.  I have been baby-sitting since I was 11, teaching since I was 21.  Yeah, I get burnt out on kids sometimes, especially when I see kids being shitty.  But I know on some level I’d like to give it a whirl.  I don’t have the undeniable urgent need now but I know I don’t want to not have the option to have kids (negatives can kind of cancel each other out there); I don’t want to miss my opportunity.

And I definitely don’t want anyone telling me no!  OH HELL NO!  You tell me no?  I want it more.  Like when I was a freshman in college and this great professor said to the class, “well, if you are having a hard time with chemistry or physics, you might want to reconsider being a marine biology major.”  Um, excuse me?  I hate chemistry and physics but I ain’t leaving.  And by the way, even though I have to take those sucky classes, I’m here for marine BIOLOGY.  Fuck you.  I’ll take a C here and there to get through those shitty necessary classes.  And then I will take my fucking degree in marine biology, THANK YOU VERY MUCH.  Clown.  Great teacher.  He might have even taught me reverse psychology there.  But I really think he just wanted to slim down the competitive major and field so all the hard core marine science nerds could find jobs later!  (It didn’t work).

So when I told the doctors, after all the shitty treatments and such, what does this mean about having kids?  They said, wellllllllll…….  You should wait.  You shouldn’t have kids.  It might not happen.  You might not get your cycle back (I did, step one).  And then the crusher…

Well, you don’t want to make your husband a single dad raising a kid by himself.  You want to be around for that child.

FUUUUUUUCK YOUUUUUU!!!!!!  (Ah the cursing, I know, I know).

I have been told that by 2 doctors, one recently.  I want to fucking scream at them (I don’t, I’m usually blind sided and stunned.  I curse up a storm in my head later).  Worst fucking thing you can say to me; worst load of crap you could pull on me!

Back to that science thing, for a moment, about all living things needing 3 things to continue existing.  I am not going to live forever, why can’t I want to create the next generation to, biologically, pass on genetics?  Yeah, Sean and I are not the only creators of the next generation but why when I ask about this part do my [scientifically-minded, biology-based] doctors look at me like this is a novel and wild idea?!  It’s not the sole reason to have a kid and it’s not even the strongest reason to have a kid but for crap SAKES!  BE A SCIENTIST for 5 seconds and understand where I am coming from.  Yeah, I’ve thought about it: if I died and left a kid behind that would SUCK but it would be the greatest thing I could do with my life.  And I married my husband because I know without a doubt he would be a great father.

Also, I could walk out of the office and get hit by a bus and NOT DIE FROM CANCER.  Stop being doom and gloom!  You told me my cancer was gone!  But now when I want to move on from it, they’re all well, um, yeah, well, death, no, maybe, um, no, death.  I can’t fucking win with them.

Most importantly, IT’S OUR DECISION!  Thank you for informing me, but ultimately Sean and I will decide to try to have a kid or not.  Doom and gloom won’t work on me.  I’ve heard it enough these last few years.  Research is limited and they just don’t know what will happen to me with the cancer coming back or not.  No one knows so why can’t we err on the side of me living my life?  I can do it cautiously to a point but if you crush my hopes and dreams then you are not the right doctor for me.

I’ve gotten my rant and the gist of it out and now I can tell you the reality of where we are at.

I’ve been going to a fertility specialist.  Wait wait wait.  It’s not what you think.

You’re thinking shots and all that.

Thankfully, I can’t do that.  Taking hormone shots would be like giving an addict free drugs: my cancer type loves that shit!  It could “flare up” (I thought that sounded nice and manageable; it sounds better than “return as a giant hostile tumor in any body organ or all of them”).  Yeah, shots are never a possibility.  And I say thankful because… that’s just not for us.  If we can have a kid, I’d like to just conceive naturally or not at all.  I know it’s rough for you to imagine that I can be so all or nothing about it but I am and we are.  I just don’t want to force something that isn’t meant to be.  It would be too hard and stressful.  I’ve had enough of that these last few years.  Conceiving a baby needs to something that is fun and easy and if it happens, great; if not, it’s OK.  I’m OK with that.

So, in review, our options: 1) walk away; 2) try to conceive and fail; 3) try to conceive and succeed.

I think I can be OK with two of those.

And if you know me at all, it is NOT to walk away!

We’ve done some testing with the specialist.  I have the egg supply of a 41 year old: not great but not impossible.  We’ll face countless challenges and heartache going forward but we are prepared for that.  Sean and I have a plan that we will discuss with the doctors in the coming weeks and we will see where it takes us.  It’s not radical; it’s responsible; it might run the course of many years.  And it’s very us in many ways; in a few ways, it goes against our nature but it a wonderful way that we are learning more about ourselves and what we can handle.

But the most important thing is we have each other.  And we’ll figure it out.  We have made peace with our options and potential decisions and outcomes (even if we can’t prepare for all of them) and we are ready to move on and move forward.  As we learn more, things will inevitably change.  Like, maybe, better doctors that can be more open-minded.  And maybe a few other hiccups on the way.  We had this shitty thing happen to us; but that’s ok, let’s move forward.

All I know for sure is: you don’t tell me not to try; you don’t tell me not to dream big, even if it’s too big; you don’t knock me down and expect me to stay there.  I am happy to be humbled–and Lord knows I have been these last few years–but I don’t give up!

Like, now-ish?

It has almost been a year!  Man, oh man.  A lot has happened (and not happened) in a year.  Is it time to come back?  I’ve got some thoughts and ideas but sometimes it’s difficult to throw it all back out there, out in the open.

In the brief run down, we found a great rental in West Seattle with a yard for the dog… which actually has since become dogS!  We got jobs, despite more hardships that I thought any couple could handle. We started on a new path of capable medical care (including all the options and egos that come with living in a city: more to choose from but more to wade through, including that asshole eye Doctor.  Oh, did you think I was done cursing?  Never).

We had bumps in the road.  Many times in the last year have said, “it can’t possibly get any worse” and then it did.  Many times I thought, “cancer was less stressful than this.”  And many times it has felt like Seattle has been chewing us up and trying to spit us out BUT we are too stubborn to dribble off.

It’s happening.  Yup, it is.  It starts with one little blog and then it just keeps going.

So if you’re new, well let this be a warning: if you wade through old blogs, you will quickly learn that it is fo’ real, all in, leave nothing out.  You will learn things about my past and my future that you can never unlearn.  You may even see me differently.  But just remember that I live the same unrealistic dream as everyone else: that exactly who I am is so transparent that it couldn’t matter too much what I write here, I am me and that’s what I live up to every day.  And, more importantly, what I say here is meant to help other people know and understand that life is not some magical perfection that can only travel the perfect course of track A.  Life is kinda fucked up sometimes, it’s bumpy, it goes the wrong way, it takes a while for the good to come out in the wash.

I also curse a lot.  And my mom still doesn’t love it.  But it’s who I am.  And I can’t give up who I am and what I love: yeah, I love to curse.  Love.  It.  I tone it down when I can but I just love that horrendously ugly language.

You may not agree with everything I say or do, but it’s your choice to read.  Or to not.

Still in?  Perfect.

From here on out, it won’t be cancer all the time.  Why?  Oh, because I don’t technically have it any more!  Yay!

WOAH WOAH WOAH.  That’s DOES NOT mean I don’t think about it EVERY damn DAY.  So, yeah, it will be in here sometimes.  Because I don’t want anyone for one minute to think that because someone goes through surgeries, chemo, radiation, medication, 3 million hours in medical facilities that they are “good to go.”  Cancer is a life sentence, whether it’s active or not.  I spend every day thinking, “is it back?” because fucking cancer is that kind of frenemy that never really leaves… gawwwd cancer, fuck off!

But this will have a bit more variety to it.  My life now is not cancer treatment all the time.  It’s actually more of that thing called life.  And memories and adventures.  There’s still some Dr stuff.  And some fucked-up-grew-up-too-fast-think-like-an-old-biddy stuff but it will be fun!

If you can stick it out, I will reward you with good times:

See ya next time!

Where are you now?

Wow, it has been a long time.  You have probably noticed by now that I have a tendency to disappear from the blogosphere for long stretches.  And part of that is that, yes, I am “cancer-free” and haven’t felt the urgent need to write as often as I did when I was going through chemo.  During that time I felt like I would burst with all of the emotions I was going through.

I have since realized that even though the bulk of that journey is over–all the diagnosis and treatment and wrapping of the brain around the impossible–it will never be totally over.  I hope it never comes back but I have to remember that it’s always a possibility and never let my guard down.  I’m just now finally in the process of moving on to bigger and better things, things that don’t involve the day-to-day all-consuming health concerns of my life.

Just things that involve the major life changes of marriage, moving and searching for a new career.

Cause, you know, once you beat cancer down there’s no excuses left to not be living the life you want.  Even now as you read this, please consider one thing: would you want to wait for cancer to come into your life as the mechanism that made you chase your dreams?  Because if the answer is yes, don’t forget there’s that whole you could die thing attached to that choice.  I suggest the other option 🙂

So yeah… in the last year or so Sean and I made it through some major milestones and we’re still working on some right now.

We planned a wedding and were married in October surrounded by close family and friends.  We had a small ceremony in Maui (we technically got Maui’d).  I was never the big crazy wedding kind of girl.  Don’t get me wrong: I always wanted to get married; I just didn’t want the big to-do.  I don’t like trying on white dresses I will only where once, or picking the exact right placement of people at a table, or simply planning events.  I admire people who do love all of that and I understand why wedding planners were put on this earth.  I mostly just wanted to take every person who touched our lives in a positive way and drop them onto an island and stay together forever with great food, drink, dancing, etc; but we had to be realistic.  We had been stuck on Maui (please do not be offended or miffed when I say “stuck,” just hang through it and you may understand what I mean) through cancer treatment and so we decided, Ok, the wedding will be our last Hawaiian Hurrah (for the time being… maybe we’ll retire there one day).  We knew it would soon be time to move off the island if we wanted to pursue other life goals (that list will be available shortly in this reading).

Post treatment and with a return to work, I quickly realized that I could not physically do the job I was doing for much longer (cleaning up after tourists on a boat while trying to teach them about whales and encourage them not to injure themselves because they had never been on a boat before).  I was exhausted every day, I was too hot every day, the pay compared to cost of living meant we would never get ahead.  It was frustrating to work hard and feel like it wasn’t getting me to where I wanted to be.  We committed to putting our wedding together in the place where we had fallen in love so that we could leave Maui on a positive note with the last thing we remembered as something amazing and happy; only a wedding could trump cancer memories.

With lots of help, the wedding went wonderfully.  It just went by too fast!  We spent the week with family and friends and had a quick honeymoon to the Big Island (we had taken a pre-wedding vacation to Chicago and Boston).  Then we buckled down at work as whale season arrived, assuming in the back of out heads that this was going to be our last winter season on Maui and enjoying it for what it was.

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I’m not sure many people believed we could leave such a beautiful place.  But we were steadfast in it.  We had lived in Friday Harbor, WA a few summers ago and we were ready for a big change, a big CITY change, one with sports and music and stores and family and cheaper plane tickets.  Sean began looking at houses on Zillow; we were so excited that the what we paid in Lahaina for a tiny one-bedroom could actually stretch a lot farther in Seattle, Washington!  Ah, the American Dream.  The potential of the future kept us focused on the short-term goals.

Finally, we sat down and made a plan, a plan that involved plane tickets.  We had selected our dates.  We got boxes and started packing; we made plans to ship one car; we started selling surf boards and bikes and all the extras we had accumulated over 14 years (Sean) and 4 years (me).  We told friends and family and work.  We checked in with the brother and fiance in Seattle and found with them a temporary landing pad as we navigated the area.

We even made a conscious decision to do something completely unheard of and out of character at least for me: we were going to move without jobs.  Scary.  Never before had I moved without job security.  This is when I had to really embrace that whole fuck you cancer (and you thought I could make it a while post without a curse word, ha!) and decided that we had earned some solid time off.  We earned the right to chuck the calendar in the ocean for a little travel and adventure during our move.  We have been through a lot over these last few years; it was time to reach for the tree, jump off the bridge and hope that bungee cord stretched (we’re still stretching the bungee cord).

Whale season came to an early end on the whale side of things which made it a little easier to leave work; saying good-bye to friends was hard of course though.  At the end of April, movers came for our stuff and we sold almost everything else.  We flew to LAX where the car had been shipped and prepared to road trip up the west coast to our final destination of Seattle.  Consider it honeymoon part II!

We coordinated with many family and friends so that we could see lots of familiar faces that we had missed over the years.  We emptied out my storage unit in San Clemente.  We ate so much good food and saw beautiful sites.  We acclimated to new weather patterns along the way.  We considered ourselves “temporarily retired,” and spent time making memories that will last a lifetime.  Major stops included Orange County, Santa Barbara, Santa Cruz, San Francisco, Sonoma, Fort Bragg, Oregon Coast, Portland, Kalama and lastly, Seattle: our new home!

And I gotta say… I love it here.  The number one thing people said to me when I started telling them I was moving (and people still say it when I tell them where I moved from) is “don’t you know it’s cold there?”  Um, yes, we know that it does get cold and dark and rainy.  Got it.  But can you maybe consider that there might be a greater reason(s) that lead to our decision to move?  Perhaps these folks could look at the positive side, especially since we had already bought the tickets (or are already here!).

So in case you were wondering why we chose to leave Maui for Seattle, let me outline it for you in the top ten reasons why we moved:

10) More for your money in housing.

9) Groceries are cheaper aka affordable; no more $5 milk!

8) Weather: I’d like to feel a little chilled/cold on Christmas, it’s OK!

7) Stores.

6) Sports, music events, festivals, shows, ballet, the symphony…

5) Flights to friends and family are affordable and shorter.

4) Greater job opportunities and better pay.

3) Hiking and green spaces for Scupper… snow for him to make yellow.

2) Qualified, capable, smart, modern MEDICAL CARE and doctors… even some that specialize in breast cancer and family planning.

1) Family and friends are way closer!

And as I learn more about the city, there’s even more great reasons that Seattle is a perfect place for us at this point in our lives.  Maui is just a plane ride away too.

As I wrap this up, let me just admit that the number one challenge I face right now is: what do I want to be when I grow up?  I am currently job searching but I have not idea what I want to do!  That’s the hard part.  I am applying for jobs that sound like they would be fun and provide room for growth.  I’m looking for anything from conservation, science, biology, lab work, and education to medical, office and editing work.  But I am going to be a little bit picky… I did interview with a boat company and received a job offer but I turned it down.  Yes, it’s a job but I don’t want it.  I did it once before and I need a change now.  I’d like a big girl job, maybe even one where I get to dress up…

We also have to find a more long-term place to live.

We shall see what the future holds for Sean, Scupper and I.  For now, we are enjoying our new city and welcoming new adventures!

“I love to see a young girl go out and grab the world by the lapels. Life’s a bitch. You’ve got to go out and kick ass.”


― Maya Angelou

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My Secret

I feel this unintentional pressure from everyone that my cancer is over, that it’s forever gone.  It is the collective hope of so much love from friends and family, to wish a disease gone by positive thinking.  I want so much to be on board with you.

But the truth is…

I never stop thinking about it.  I cannot escape it.  Always, at the back of my mind, every day is the idea that my cancer is going to come back.  There is no “normal” in my life.  I am haunted by the words of my doctors… “your cancer is aggressive,” “we’re surprised that you have cancer because you have no warning signs, no history.”  Oh, it goes on and on.  The lucky ones are the predictable ones (and how f*ed up is it for me to say that?).

I am fearful of the foods I eat, too much sun, too much stress, missing my medicine, wondering if there was some treatment I missed out on, wondering if the treatments I did will end up being a waste of time.  Wondering if I will wait four years to have kids, be just about done with “treatment,” just about ready to start planning a family and find out WHAM it’s back.  How am I supposed to live my life?  Do I live it like every day could be my last or with the hope that I will have a future?

I work hard to plan for a future but should I chuck it all to the wind and go out there and see the world?  Am I wasting my time planning for a future that I may never see?  The tiny silver lining is that some people die so unexpectedly that they never have the jolt of life grabbing them by the lapels and screaming “NOW OR NEVER,” but my problem is recognizing that… is THIS my now or never?  Is this my now?  Will it suddenly be my never?

How do I take the ideals I was raised on–hard work, commitment, adaptability, patience–and apply it to the life I lead now, a life that odds are will be limited on time?  The recurrence rate of cancer for me is high.  The numbers suck.  The odds are NOT in my favor.  Even if they were, they’re just numbers and when it’s odds and numbers, if there’s ANY chance of recurrence it’s scary shit.  I’m 30 years old and I’m facing life decisions that my parent’s generation is just beginning to face.  I’m sorry, people, but what the fuck?  Should I be considering a Will at 30?

Then there’s the attempt at living a normal life.  Yes, I would like to be 30 years old and really enjoy it.  I want to drink a few beers and not think at the back of my mind that 1) what will the alcohol do to and remaining cancer cells, feed it? 2) will a run down immune system help remnant cancer recuperate? 3) lack of sleep, cancer; 4) dehydration, cancer; 5) life, cancer…  At what point can I stop worrying and go back to a carefree existence?

And there’s always the one thing that is so hard to explain… my body is 30 but has been through so much in the last two years that it behaves as if it is much older.  I cannot recover quickly.  One day on the boats–actually, four hours–and my back is so sore.  I get out of breath easily, talking too much or too fast, tying lines, walking up a hill with a lot of gear… why am I out of breath?  It’s embarrassing and it’s sad and it’s frustrating.  I cannot do the job I have for much longer; it’s too physically demanding.  So there goes my spirit, my passion; crushed into a pile with my strength.  It’s demoralizing.

It does make me get creative on figuring out what I can do and what I should do; how do I find a job that keeps my mind occupied but is somewhat less physical?  Maybe something that allows me to balance what’s important in life.

So here we find ourselves in the middle of December during my all-time favorite season: the holidays.  And I don’t want you to walk away from this read frustrated and exasperated.  I want you to take a page from my book: here’s what pisses me off that you can fix… if there’s something in your life that you can change for the better, do it.  Don’t wait for some big life event to come along and totally fuck it up for you and force you to change.  Change it on your own time.  Because if a big life event is forcing you to change, then it may be too late.  It usually is.  Let me be your life event…

And get your shit together for god’s sake!

I don’t care if it’s committing to eating healthy, having a baby, quitting smoking, quitting drinking (or just drinking five beers instead of six each night), just fucking do it.  Don’t act like no one is watching and try to get away with that extra beer.  Really, you’re letting yourself down.  And me.  And really, I’m almost always on my death bed (when I feel extra dramatic) so if you let me down, I will kick your ass.

Truthfully, my sense of family has always been strong but since I’ve been sick it has gotten stronger and deeper.  Basically, anyone in my life is my family.  So that means anyone of Facebook is mi familia.  And I’m watching you.

In review: make your new year’s resolution and make it good.  Make it to your benefit.  Make yourself happy.  Whether it’s emotional, physical, spiritual, health, job, family, relationship… whatever, just fucking do it already.  Put yourself out there.  Try it.  Because one day you could find a lump, and it could be cancer, and it could just change your whole life perspective…

The First “Next”

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I have this new pink ribbon on my back pack.

The reason I just added it is for all the obvious reasons.  Plus one more.

After everything I’ve been through, I guess I thought–subconsciously, deep in my cute little ego–that since I had already gone through cancer and treatment and come out a survivor, that it was over and that was the last I would ever hear about cancer again for me or for anyone else.  I took one for the team after all.

But that’s not reality.

I have to worry about it almost every day (sometimes I give myself a break from worry, like a mini-vacay) and what’s more is that other people can get cancer.  WHAT?

Chris C’s mom is the first person I heard about getting breast cancer after finishing my battle.  She’s the first “next” in my life.  And truth be told I haven’t ever met her (but she did a great job with her son, my coworker,  and we have this boob thing in common so we’re practically family now).

This news comes, ironically, right after getting a skipping stone from Lauryl.  It’s a rock from Relay for Life that I am to give to the next person I meet/know/hear about having cancer to help give that person hope.  I’m talking two days ago I received this rock.  In person.  And then I hear about my first “next.”  If you don’t believe in the power of the universe and/or God/Jesus/Allah/the Higher Power/Fate/Karma then here is some proof that there is some other magic going on out there (or just stop reading, or keep reading and I will not talk too much about those aforementioned specifics except for maybe the power of the universe, which, if you have read the Alchemist, my favorite book, then you know how it works… or do you?  Or do I even know?  What just happened?)  Accept the mystery, I suppose, revel in it.

As much as I would like to wish this whole cancer thing away, we are so obviously not there yet.  It’s getting better–the research, the treatment, the options, the conversations–but we have a long way to go.  Right now is the critical time for advocacy, to help those going through it and those who are the close support group of those going through it.

What spoke volumes to me was getting texts from coworkers ready to cover shifts before I had even gotten a chance to read my email from Chris about why he had to dash off island (unfortunately, he had another more tragic reason to depart and so I am doubly sad for him).  The people I work with–and this goes for every job I’ve had–are amazing.  I love them.  Yup, it’s true.  They are my family.  I love to see them happy and successful.  Sure, I love when they have name tags on and close-toed shoes (oh, you knew that would be in here!) but more than anything I love to see them shining.  I love to see them helping each other out and not because they were told to but because they are such good, cool, awesome, smart, funny, caring, kind, considerate people.

I like to see them furthering their careers and reaching their potential.  I like to see them aiming for distant goals.  I like to sit in my kayak at work and come up with career options for them (for Chris, I determined he needs to host his own show in Discovery Channel or Animal Planet, we are currently seeking people that can make this happen!).  Oh, don’t worry, work, I’m still monitoring the snorkel skills of passengers while I’m in the kayak.  I can multi-task.

Sometimes I consider a career in HR or career advocacy because I like this so much but then how would I get to surround myself with these cool oceany sciencey piratey people?  (According to spell check, I just made up three words!  Amazing).

Adding “word inventor” to resume.

Oh, I’m back now.

Anyway, those people are rocks.  They–we–will support Chris as he supports his mum.

Now is the time where I have to admit to you that I got out of bed at 11:30 pm (way past my 9:00 pm bed time) to write this because I couldn’t sleep and it’s now 12:15 am and I have to be up in five hours to work with all of the above-mentioned people.  I could not sleep until I got this out of my brain.  And also note I’ve been in wedding planning mode slash the-final-twenty-eight-days-count-down-to-Mrs.-Sultan-hood-aka-marriage-aka-nuptials.  Let’s just say don’t ask me too many complicated questions over the next few weeks!

Thank you, I love you, and good night!

Oh, and Mrs. C, you now have 150 more people thinking about you, praying for you and wishing you a quick and clean fight, go get ’em!