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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Cancer, You’re Being An A$$hole!

Warning: Not intended for small children learning to read.  Despite following the songstress, Ke$ha’s, ruling that “S” letters can be swapped out for clever symbols to disguise bad words from children while still allowing intelligent adults to see the true lettering, I fear that some children of this era are too smart and will not be fooled.  Keep this blog away from your tiny geniuses!

I have a slew of Doctors visits to clarify with you, a grand decision that has been made and a gift to self but first I’d like to give a shout out to cancer being an asshole in the most strange of ways, a way I have alluded to before.

“I’m start chemotherapy in June.”

“Oh, what for?  Do you have cancer?”

“I have breast cancer.  Er, well, I had breast cancer.  Actually, well I might still have breast cancer?  Really, what I’m saying is… That, well… Ok, here it is, you know the short version.  I had a lump in my breast that was cancer.  And they removed it.  And they said that one lymph node had cancer.  So they removed that.  Which would mean I don’t have cancer anymore.  But then since it was in the first node but not any others, I might still have cancer.  Think like Star Wars and that my cancer cells maybe went stealth and snuck by the first node and now they have an invisible force field around them so that no Doctor can tell me I have cancer but we all have to err on the side that maybe I do still have cancer, when maybe I don’t, and I have to have chemo.”

“So, you have cancer?”

“I don’t know.”

Fuckin cancer!  If I say I have it I feel like I might be lying but the short answer is, yeah, sure, I have cancer.  Or on a good day: NOPE, NO CANCER but I’m having chemo for fun, just in case, just for the experience and curiosity!  Or on a bad pessimistic conspiracy theory day: yup, tons of minute microscopic little cells float around within me ready to land and harvest another of my organs, gotta watch my back, gotta put some chemical warfare on these punks, no more peaceful protests from this hippie chick.

Man, I sure have an active–healthy?–imagination!  Don’t worry, I haven’t gotten to the talking to myself in the grocery store stage yet, though I bet some busy women do this simply because our to-do lists are so long and never-ending.  I haven’t gotten to the crazy lady shit yet.  These are just the thoughts I have right before I fall asleep, when women are known to do their best–and maybe wackiest–thinking.  Then we fall asleep and forget it all.  But sometimes is stays in the brain until I can release it into the blog world.  And now this crazy talk is in your brain.  Welcome to my world!

A short stint into words…

Chemotherapy shall be mainly referred to as chemo, because therapy sounds peaceful and so far, chemo–with its baldness and its mouth sores–does not.

The word blog is a weird word of my generation and I wonder how it was thought up.  Some “writer” was probably thinking, “Man I’d like to write something, maybe a book?  No, too long.  An article?  Too much research.  BLAAAHHHH..gggggggg!  EUREKA! That’s it!  I will create a new genre of writing word vomit with facts, if I so choose, and interesting bits of life’s quirks and maybe it will have a purpose.  And I will write it when I want.  Or not at all.  I will write it when I am not Tweeting and I will Tweet about it so that I will have free advertising.  And I shall call it… a BLOG!”

The nitty gritty is that I had that second opinion with that lady Doctor and I was sorely disappointed.  Not because she basically gave the same treatment plan with a different suggestion on specific chemo drugs (ones better for my heart; will discuss with original Dr).  And not because she put a hard emphasis on the hormonal therapy, the drugs that I need to take for five years and thus would really put me out there with my age and the baby plan (there isn’t a “plan” per se but for the sake of argument, let’s just imagine I wanted to start having kids at 30-32; now I have to wait 1.5 years for chemo, 5 years for hormones and 2 more years “just to be safe,” though this last part is not research-based.  I’m 28.  You do the math.  We did also discuss “the risk I would have to decide to take” if I wanted to take the hormones for 2-2.5 years and then have baby time.  Studies show that 2 years is good, 5 years is optimal and 10 years didn’t show much difference.  I do believe Giuliana Rancic is on this one, tamoxifen).

What really pissed me off the most was her complete disregard for what I wanted.  To a point of dumping on my wishes.  Ah, hi, I’m paying out of pocket to be here.  Please, stop talking and start listening, hone your sensitivity for me and my needs.  I told her my main concern was infertility from chemo.  What I wanted to hear was reassurance.  I wanted to hear about studies in which women had children after chemo, maybe that chemo affects a certain age group’s reproductivity more or less, or that there were other options to chemo or within chemo to lessen this risk.  Or they had invented an invisible shield to protect my womb!  Ok, maybe not that.  But you know what I mean.  This was the Pacific CANCER INSTITUTE.  I wanted to hear the cutting edge research about my age group with breast cancer and future offspring.  That’s all.  Pretty simple.

Did she tell me anything like that?  You know the answer: no, not really.  She suggested egg preservation (which I had already heard about from my gynecologist and had an appointment for after this one).  She gave me a paper about drugs to be used in association with the hormones that would be injected in me should I harvest huevos (eggs in Spanish, we’re bilingual today).  And she went on to say that I should really consider egg preservation and surrogacy.  I told her that I was thinking about it but that my concern was that if it were to come down to it, I would much rather have my own child, that I’m really not into the surrogacy thing.  I want the bonding and the experience of pregnancy.  You know what she said?  Moms out there, you’re gonna shit your pants, she said the bonding thing wasn’t really that great, pregnancy isn’t all that great and that surrogacy would let me keep my figure.  UM, HI?  WTF?  I am not the kind of woman that wants to hear that shit, oh, heeeeeeeeeell no.  If she was saying it to make me feel better about my fertility options, she actually further encouraged what had already occurred to me: that maybe frozen eggs aren’t for me.

But let’s go to the fertility specialist before we make any decisions.

The dog just farted; it smells disgusting.  I want you to be able to experience everything with me.  It must have been the bacon Sean and I snuck him this morning.  Or the six gallons of ocean water he drank yesterday.  Damn it, it’s lingering.  He’s asleep on the couch and didn’t even wake up for it.

The fertility specialist’s assistant had called the day before to try to move the appointment later.  I had said no since I had one more appointment after and didn’t want to be driving like a maniac to it.  She said not a problem, we can keep it as is.  I got there at 2pm and had to wait 45 minutes anyway to see the Dr!  Again, me = paying out of pocket moula for this.  I SAID NO TO COMING IN LATER!  Was there a miscommunication?  Anyway, when I did see him it went well (and he said no charge).  He said, yes, you would be injected with hormones as part of the process but then I would have chemo right away so any problems with hormones, theoretically, would be taken care of.  But then we talked about the cost (which, honestly is not a huge concern for me, I could make it work and there are a few non-profits that help out financially), and that the eggs that are harvested may not even have a viable baby within them, some would be damaged, there’s a monthly charge for storage (can you imagine a chilled three inch petri dish storage unit at $50 a month?  I pay $89 for a ten by ten in Cali, though not chilled), surrogacy, timing…

The more I nodded the more it dawned on me… I don’t want this.

Cause here’s the thing everyone, and maybe it’s just my thing but it’s still a thing: for me, the major allure of being able to create a human life that is in part me is the beautiful mystery of it all.  That’s it.  That’s what I am interested in.

When we’re talking about hormones and uterus size and egg numbers and test tubes and freezing and re-implantation and surrogacy, all that mystery is diminished with each step in the process.  Sure, genetically the child would be mine but I don’t just want the genetics (and even those are still questionable as we await my BRCA test).  I want the natural experience of having a child.  Or I’m OK with a very different, modern, helpful option: that might be lots of dogs and/or adoption of small humans… both cases are about someone that really needs a home, nurturing and a lot of love.

Egg freezing and surrogacy may be for some people, but I can’t do it.  As much of a proponent for modern science as I am, I am also still old fashioned in some respects.  This being a prime example.

The next year and five months will be a long, drawn out version of russian roulette and on the winning end of it, I will hopefully still have my fertility.  85% is my goal number.  85% of women are still fertile after chemo.

It’s also very close to some other important numbers, numbers that are the reason why I have to be OK with chemo: “89% of those treated for breast cancer will survive 5 years, and 82% will survive 10 years.”  I was always more of a B student so I will take it as a good sign and run with it!

My last appointment was easiest and with those I have grown to appreciate and truly trust, my home team: the Kaiser surgical staff.  Ol’ righty looks pretty good, she’s settling in nicely with lefty showing her the way.  My mastectomy scar will heal over many months and then be used to squish in and create a new nipple (ah, modern medicine).  Three rounds of tattooing later and I will have what will resemble a pretty believable new boob.  It feels good to be mostly complete with that aspect.

I cried at my first appointment, but then I just got frustrated, angry and gave up cause the tears weren’t worth it.  I almost cried at my second appointment but held it together.  By my third appointment, I was so emotionally wrecked that I just cried it all out, all it took was, “how have things been?”  And I don’t cry in the peaceful, Demi Moore in Ghost single tear from one eye way; it’s both eyes full buckets, runny nose (my nose cries too) and not able to speak a word then ragged breathing to shudder-talk.  It kind of has to pass before I can get back to a coherent conversation.  But the surgery center is good section to cry in because they actually are on my team.  This next year is gonna suck, she said, you got dealt a shitty card but it will go away.

I know what you’re all wondering–even if you forgot what you were wondering since you got sucked into this episode of Serena’s boob drama–what gift did you get yourself?!

Serena, you’ve won.. A. NEW. CAR!!!!!

Don’t worry, even though I am allowed to have a mid-life crisis or a 1/3-life crisis or whatever, this is not it.  I bought myself the car I’ve wanted since college because life is short and I’m tired of waiting for the right time or the right star to align with a half full moon on the 23rd of August.  Plus, I needed something higher up, more reliable, sportier and with tinted windows and AC.  It’s a Craigslist find, gently used, great condition 2000 Honda CRV-LX.  That’s right, a Cancer Resistant Vehicle-Lets Xtinguishthisshit!  That’s the name right?  It was on Kelly Blue Book like that… Maybe not but it sure would make a great boat name…

A couple of things coming up that you can help with:

1) I have a haircut on Thursday.  My hair is long and chemo might take all or some of it (and hey, maybe it will leave it all).  But to pretend I have some control and to not be totally freaked out when long pieces fall out, I am seeking a mid-length cut, shorter than I’ve had in years and I am looking for suggestions and ideas.  Celeb photos accepted.  I have stick straight hair and I use a blow dryer twice a month, oh and I live and a sub-tropical climate.  That is your challenge should you choose to accept it.

2) Friday I have a third opinion with Kaiser on Oahu and then I have probably the most difficult part (other than mastectomy pain) of this whole ordeal: I get a port installed in my chest.  Look, cancer/chemo combo, it’s not enough that our hair falls out, we puke our guts up and we’re tired for a year and a half, but you make us get an unsightly medical device installed in our chests for all the world to see and murmur about?  Real cool, real cool, ya jerk.  No matter how you dress that up, I’m not going to be happy about it; though my arm veins will thank me as will my nurses who hate poking me for an IV.  So, basically, pray for me and if you’re going to stare at it or want to stare at it once I get it, at least have the decency to ask about it and/or make a joke about it.  If you try to treat me like a leper I will slap you with my port tubes!

3) We’re moving to Kihei at the end of March so if anyone wants to help us move, let me know!  I will be closer to my Doctors and work as I plan to switch my job responsibilities over a bit.

4) Go outside and let the sun kiss your face (with SPF 30+)!  And plant some flowers.  Or tomatoes.  Or both!

Start Here

each day is ours

“When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.” ~Harriet Beecher Stowe

Aloha friends, family, associates and random souls!

If you’ve found your way here, you have probably heard that I have been diagnosed with breast cancer.  I’m 28, there’s no history in my family (other than my dad’s mom at 62 ish), and there were few symptoms, just a small lump.

This blog is my form of therapy to keep both myself sane and you all informed.  Anyone is welcome, anyone can write anything any time, which means that I myself may not be censored!  And yes, mom, that means that sometimes I might curse like a sailor (because I am a sailor and for the record mom did try to keep my mouth clean growing up–once, even with soap!–but you can’t stifle who you are, at least not all the time).  You’ve all been warned: there’s no holding back here!  And remember, too, folks, we’re not all doom and gloom here.  I’m all sorts of Yankee sarcasm (not those Yankees, they suck; go Red Sox!) and witty commentary so don’t pull out too many tissues.

At times, it’s probably going to suck and be hard for me to write and you to read, other times maybe even gruesome, optimistic, happy, sad, frustrated, pissed as all get out, confused and, largely, hopeful.  I’ve learned in the last few days that those emotions are not just mine but all of yours too.  Go for it.  Emote.  Join in.  I have an amazing network of friends and family and by sharing this with you, I hope to create an open dialogue, stronger relationships and awareness for this issue.  Maybe, just maybe, it will even save a life.

Here are the facts, from the beginning:

~February 21: Lump discovered by me at home at random; surprise, fear, confusion, urgency ensue; call Doctor pronto

~February 22: Doctor checks; probably a cyst, make mammogram and ultrasound appointments and then make an appointment for surgery because I probably want that thing out; slight relief, still restless

~March 6: Ultrasound appointment (oh, both mammogram machines are broken?  Thanks, Kaiser, don’t you think that’s a problem?  Note to self: follow up with Kaiser on their insistence of protocol and saving money by not offering to outsource me to a working mammogram machine across the street at the hospital; also note, ultrasounds are better at imaging for my age group and mammograms are not part of regular screening for women until about age 40).  Ultrasound is inconclusive and cannot tell if it’s fluid-filled (a good thing) or not (bad thing), proceed with surgery and follow up there; still not at ease but hopeful

~March 14: Surgery to remove the lump (or, would I like to make another appointment to biopsy without removal?  Hell no, get that abnormality outta me!); Surgeon, Dr. Gambhir, my favorite person at Kaiser, does local anesthetic and talks to me the whole time with the nurse holding my hand, removes (extra anesthetic needed; I felt it, it sucked) the lump, mentions it looks fibrous, bottles it, bags it and ships it. Oh yeah, I looked at it.  I’m a scientist, I have an overwhelming sense of curiosity, I had to see the invader.  I need to understand this intellectually too.  Lab results in 3-5 days, is it OK to talk over the phone?  YES.

~March 16: Results are in.  That was fast.  I did not expect it so fast.  Everything at Kaiser takes so long.  But this was Dr. Gambhir.  She and I think alike in the I-need-to-know-yesterday sense and the let’s-get-a-move-on-now way as well.  No surprise to you at this point: the biopsy came back cancerous.  Of course these results are a surprise to me and the Doctor and everyone else I tell.  As I mentioned, there is no breast cancer on my maternal side; 2/3 of women diagnosed with breast cancer are 55 or older.  Well, I’m the 1/3; and I should probably play the lotto now.  Doom sets in, lots of thoughts of mortality, anger, frustration, shock, sadness, pissedoffedness?  Yes, dictionary.com, that one’s for you: I’d like to enter this new word for consideration.

What is it: a duct that would deliver milk for nursing has cancer cells within, which created the lump.  It’s called ductal carcinoma in situ (DCIS for you Google-rs) BUT it is WITH invasive cells.  What the invasive cells do is basically jump off the mother ship–the lump–and try to ride my lymph system to bother other organs and body parts.  The current question we now face is: did any cells jump off the mother ship and tour my body, finding a new place to settle and replicate and make friends aka lumps or tumors if you’re feeling strong?

And where do we go from here?

Sean–my boyfriend/partner/roommate and primary support system–and I met with the Dr yesterday (March 19th) to understand the problem and plot the course of attack on it.  I have surgery scheduled for Friday for a lumpectomy to remove breast tissue around the affected area until there is a clean margin (no cancer cells detected on the outer edge).  While sleeping under the aid of drugs, they will also inject me with a dye/material to find invasive cells and see if any made it to my lymph system, then biopsy an armpit lymph node (this is part of staging).

Currently, I am tired of typing and recognize that this is long and just the start of more to come.  It’s enough for you to be informed.  As for me, the last 48 hours have been a lot of phone calls and explanation, tears and emotions, research and understanding, planning and paperwork.  Mom and dad come Thursday.  I work my last day as a naturalist–a “whale girl”–at Pacific Whale Foundation on Thursday and then settle in for a 2 month hiatus from work responsibility as recovery from surgery is 2 weeks and radiation will follow for 4-6 weeks 5 days a week.

Basically, I’m doing OK.  Almost good.  It helps to have a plan and to know that the plan will start soon, that Friday will tell me “how bad it is” to some degree via staging.  I’ve got all of you and my cheer team here in Maui, I’ve got a Doctor who is intelligent, capable and kind, I’ve got a dog to pet and people to bribe me with delicious roast chicken, cooked carrots with mandarin oranges and rice pilaf; dessert of my choosing.

Those who I have opened up to a little and a lot–which is not my character to be open, until now–have been very supportive and encouraging.  Everyone wants to know if I need anything and I realize that we all feel helpless when this kind of shitty (mom, a sailor stole my computer and typed that, not me) news is delivered.  We all want to be in control of our lives in every facet; it’s part of what makes us human.  The reality is that I’ve probably had cancer for a little while–days, weeks, months, who knows–it’s just that I finally discovered it.  When I think about it like that, I feel like a detective; I feel almost in control.  And now we’re going to fix it.  We’re gonna kill it off and throw it out!

But just in case you can’t sit still, here’s your homework:

~CHECK YOUR BOOBS!  Boys, too, you can get cancer of that region.  Or tell your wife or girlfriend or best friend to do it.  This is not just a lady problem; it’s everyone’s problem!

~Do what you need to do to feel better: call me, email me, ask questions, facebook me, research it, tell someone, turn off the computer, spread the word, check in in a week, listen to your favorite song, pray, talk to your family, call my mom (she likes sharing, let me know if you need her number, she’s good at momming so even if you just need to be mommed, she can do it; she might tell you to get a tetanus shot or a flu shot too).  But remember that I’m not a leper!  I still do healthy people things.  I feel great.  I wont on Friday but that’s the nature of surgery.  I am not fragile and I do still need to be treated like a feisty, sassy, capable, living human!  Don’t feel the need to walk on eggshells for me because I will call you out on it!  But don’t hug me without checking first, that one you have to be careful of.

~And most importantly, because I’m still a conservationist, save the planet!  No more plastic bags, people!

I love you!  I have to go read this and fix my typos.  Don’t be shy, now!

Serena

serenaneff@yahoo.com