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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All Clear

The best results I could hope for are in!

-Mammogram for lefty: no sign of disease (I passed, it’s clear) but we weren’t too worried about that

-X-Ray: clear, nothing on or wrong with the bones, particularly the ribs

-CT Scan: clear, no sign of disease in chest or abdomen

Chemo is done and there’s no cancer!  Yay!  This feels so weird.  But good weird!

We still don’t know what’s wrong with my ribs (muscular possibly) and I’ve been to the chiropractor and for acupuncture and massage.  Hopefully, that will clear it up.  Otherwise, maybe it will just disappear as mysteriously as it appeared.  I feel better knowing that it does not appear to be cancer rearing its ugly head again.

I’m happy to be walking away from this–albeit, slowly, cautiously and with glances over my shoulder–and on to the rest of life.

Like a job promotion (check)…

And a wedding (3 months to go)…

And maybe a big Christmas present!

Bittersweet

The title… I know…

What’s she gonna write?

I shall explain.

Today is a great day: today I finished chemo!

After a year and two months of constant injections, needles, hair loss, nausea, red devil, “peeing it out” I’m finally done with it.  It is such a victory to finally get to this day.  I have counted down every chemo injection to reach this point at last.

I cried and I triumphed.  I laughed and I fought.  I gave up vacationing and travel.  I embraced the couch with vigor.  I napped like a champ.  I watched almost every episode of Law and Order; SVU.  I put my dreams and career on hold.  I did not throw up!  I read books.  I stayed inside.  I stayed away from crowds.  I did not eat sushi, raw eggs or lunch meats.  I cried and I survived and I thanked God for every friend, family member and supporter along the way.  I slowed down. I mellowed out.  I got engaged.  I started to figure out where my life should go.  I decided this cancer thing would be a SMALL part of my life and then I’d move on.

And I finished chemo.

The thing is, with cancer, ya know, is you can never get too comfortable…

About three weeks ago, I noticed a constant pain in my ribs and I let my nurses know during that chemo.  I thought it was just my scar and scar tissue had built up.  Then in the last week, I noticed a constant pain in my ribs on my back.  Both areas still hurt but there’s no bruise.  It’s persistent and consistent.  There are a great many things it could be.

But on Saturday, when I went to bed, the worst case scenario came to me like a freight train:

…What if it’s bone cancer?

Under the horribly-available-likely-useless-at-least-it’s-something guide of Google, I checked briefly what that might look like and yes, my symptoms (constant pain, worse at night, etc) combined with my previous health dilemma (read: “breast cancer”) mean it is a very real possibility.

Can’t I catch a break????

Before you get too worried, I don’t know what it is yet.

Once the potential for a second cancer settled in on my mind, and my mind kept spinning it around and around like a sock in a dryer, the tears welled up and rolled down.

You see, my self preservation button often automatically tries to determine the worst case scenario so that I am prepared for any diagnosis.  If it turns out to be broken ribs, then that would be better than cancer.  ANYTHING would be better than cancer (well, almost).

Can I go through this again?  Can I do surgery and chemo and pills and feeling awful and and and…

And then I try to stop.  I wake my fiance and he reassures me.  I go to sleep.  I go to work and I push it out of my mind.  I try to think about it as little as possible.  I pet me dog.  I eat good food (chicken wings!).  I try to live and I try to not fall apart.

And I go to my last day of chemotherapy.

I tell my nurses that I’m happy to be on my last round but that I’m worried about my new pains.  They schedule an x-ray and a CT scan.  It could be anything.  It could be from doing too much activity.  It could be hairline fractures on bones weakened by radiation.  It could be from free-diving at work and putting pressure on my lungs and therefore my ribs.  It could be.

But what if…

We tell ourselves to “be positive” and “think happy thoughts” and “say no to negativity” (bumper sticker?!) and I’m trying, I really am.  But I’m also very cautious.  I want desperately to jump for joy at being done with chemo but this discovery and realization is weighing me down.  I feel like I’m disappointing everyone that has been gunning for me all these months.  And I also feel like my body is letting me down.  Again.  I’m stuck in this disappointment sandwich, and it sucks.

There are two things that happened today that make it clear to me how precarious a situation this is:

One was when I was asking about scheduling to get my port out soon (before the wedding) and my nurse said we should wait to schedule that once I finished my x-ray (today, done) and CT scan (Friday).  Like, I might need to use my port again…

And two was what my favorite nurse, Annette, said as I was leaving and she realized I was going to cry, “I wish I could tell you not worry…”  But she can’t.  Because once you have cancer and you fight it and you beat it away, you always remember in the back of your mind that it can come back.

Cancer is an awful thing.  When it’s not physically strenuous, it’s mentally taxing.  It’s a constant roller coaster of the worst series of emotions.  No one wants to think about the very real and tangible possibility of illness or death.

I wanted to keep this to myself but I couldn’t hold on to it; it was drowning me.  You have all been so amazing and supportive.  You are all so excited–as am I–to see chemo end, but I felt like it’s kind of a lie.  True, it’s over, but I’m so preoccupied with this other thing that I figured you deserve to know.

I believe that knowledge is power.  The obvious take from that is that if you learn, you’re more intelligent, desirable, skilled, capable, powerful.  But it works in another way.  This bit of knowledge above is spread to you, and while it may not be good knowledge, it allows you to help me.  It’s the power of a thousand hands and five hundred hearts.

I Wish I May, I Wish I Might

Aloha friends and family!

This is a very special installment of my blog (and… as always… over-due!).

Some of you may not know this but I am a huge fan of reality TV, especially Bravo and E!  I love the show “Giuliana & Bill.”  Love it.  Because they are cool and Giuliana is funny and Bill is such a good guy.  But also because a few years ago just before my diagnosis, Ms. Rancic went through her own battles with fertility and then breast cancer and she broadcast it on TV for all to see and learn.  I am so thankful to her for doing that because she made cancer understandable; the made it something we can talk about and not just quietly behind closed doors.  She looked at the world and said, yup, this is happening to me and I’m gonna be the one to tell the truth of it all… the unsexy moments and the beautiful ones too.  Bad ass!

As I was watching E! news today, the universe intervened.  On came a news bit about a very cool web site and special opportunity for women with breast and/or ovarian cancer created by Giuliana Rancic.  It’s called Fab-U-Wish by Bright Pink.

http://www.brightpink.org/ive-been-diagnosed/fab-u-wish/

I seized the opportunity (before I forgot to do it or lost the guts to do it) and I went to the web site.  I wrote the essay but that wasn’t enough to show I wanted it.  To do that, I went the next step and made the YouTube video.  Face time is important in this day and age; we can all hide behind a computer or a cell phone or a piece of paper but when you have to record and listen to yourself and share it with others, it impresses on those around you that you mean business.  That you want it.

And I mean business!  I want it!

Here’s my video, I hope it works.  And for those of you that may be surprised by my request because I’m a science nerd who wears ugly work shorts, t-shirts and flip flops all day every day, just remember, I’m secretly a glamorous and girly woman inside (who watches reality TV); I just need the opportunity to show that side of me!

The Tough Conversations We Have

Just a word of warning, should you choose to proceed: this blog post will be somewhat graphic and cover the content of reproduction in scientific, biological and emotional facets.  But I assure you, whether you’re male or female, single, dating or married, with or without children, this will pertain to you–or someone you love–somehow.

I realize that yet another great expanse of time has gone by since the last post, and I can go through all the lines of why that is (work, work, work, wedding planning, family in town, I’m lazy, it’s not as exciting to write when the potential for vomit has decreased…) but the truth is, I just don’t want to write this blog.

I promised to be honest because I know that every human faces their own struggles in life and somewhere along the lines this site and one or many of the posts will pertain to you–we can all connect on so many levels and in so many ways.  Yet this topic is just so tragically difficult for me.  It is fraught with confusion and decisions that must be made which quite literally are life or death: my life or death or the chance to create another life.  So many “or’s,” when do I get the “and’s”?  My life and another one.

To back us up a little bit… I am in a committed relationship to Mr. Sean Sultan and we will be married in Maui on October 27th.  We are registered on Amazon.  Oh, there’s that east coast sarcasm again!  And, well, while we love our dog Scupper very much and hope to have twenty more on a huge property like Cesar Milan, I’d also like to produce a small human (yes, a baby) as well.  Just one.  Once upon a time maybe I wanted more but I think I’ve bartered and pleaded my way down to just please let us have one.

Pre-cancer, I was happy to assume these things would be determined in time and that I would not have to be in a rush to determine when and how a family would appear in our lives.  We were happily gliding on the dating-get-married-when-we’re-ready-maybe-buy-a-house-some-day-talk-about-the-kids-thing-later cloud.  And then, of course, we all know what happened.  Cancer was dumped in our laps and with the threat of chemo potentially taking away any and all chances for kids, we had to look at things abruptly and make some harsh decisions.

You see, friends, chemo forces the body to go into survival mode and while many of you know this means no more hair shall grow and the stomach lining shall remove itself with dramatic force (as the body purifies itself of all toxins and focuses all minute energy gleaned from the small amounts of food that make it in and stay in on survival), it also means that that if we aint usin’ it, we losin’ it.  To spell it out for you: this body is unfit for babies and thus shall not have a menstrual cycle.  Depending on a woman’s age, my period would come back or be gone forever.  How I wish the Doctors had a better answer for me there!

I started chemo in June, had an IUD (ladies know what that is; guys, you can google that for your knowledge) placed around that time and had my last period in July.  As much as we all think PMS and menstruation sucks and is annoying–painful, inconvenient, requires us to buy embarrassing boxes of materials and unusual amounts of cookies while the Safeway guy tries to pretend he hasn’t noticed…–it is kind of wonderful to know that as a woman we hold the best of the power of progeny.  Like, if we really wanted, we could create an entire HUMAN BEING (and I don’t mean to discount men on this, but really, how hard is it convince a man–ok, ok, some men–to… donate… if a lady was really set on this?).  So, I was pretty bummed to say bye to Aunt Flo because, truth be told, I felt a little less than.  I felt like that whole mystery-of-life opportunity was taken away from me and my fate of its return was unknown.  That coupled with my hair loss made me feel like less of a woman (thank God for nail polish and lip gloss!).

Fast forward to October and the end of really-super-tough chemo.  I fall into a holding pattern as I watch my hair slowly start to re-grow, my mouth hurts less, my stomach realizes that I will no longer be torturing is.  And all that time I’m just waiting for one more pre-chemo thing to come back.  And it doesn’t.

Until April.  (Oh, how you all held your breath on that one!)

And it came back with a vengeance!  It lasted an entire month.  But that makes sense, right?  I mean my body went on pause for nine months, it had a lot to say after that.  I hated it and I loved it all at the same time for everything it meant.  I could maybe have kids!  But it’s very frightening to have a period for a month and (gross part) a very heavy one at that.  I didn’t think a human being could lose that much blood and survive (you wanted honesty… I warned you!).

Of course, since cancer has made me a hypochondriac in some ways, I called my OB/GYN and went right in.  I will take a moment right here to tell you that I do not accept anything less than getting seen and/or tested within two or three days anymore.  None of the “machine’s broken” or “we’re all booked.”  Oh, hell no; refer me out, fix the machine, make time but I am coming in to be seen by a Doctor!  Shit, I got a life to live and damned if anyone is going to tell me my priorities aren’t important.

I ended up with a wonderful gynecologist Dr. Rogers, who is very kind and sweet and understanding.  I had blood work done and everything was normal and then I had my uterus looked at (enough said).  And she determined that the uterine lining was indeed very thick and that this much bleeding was normal after so long, that I could let it run its course which should be one to two more weeks (a little less than 4 weeks total).  If it got worse I was to call right away.  The other option, which is normally used, is progesterone by birth control pills to chemically balance everything but that is not something a hormonally-based cancer can handle so I had to stay clear of that.

She also found something else.

Because when can I ever just get through one thing–cancer–and let the universe finally say, “ok, that’s it, we just wanted you to pass that ONE challenge test and you did it all and now we’re done.”

Each of my ovaries has a cyst.

Holyshitareyoufuckingkiddingme?  ENOUGH ALREADY, UNIVERSE!  I PLAN TO HAVE CHILDREN.  STOP TRYING TO TELL ME NO.  I’VE DONE EVERYTHING YOU WANT, WHEN ARE YOU GOING TO LEAVE ME BE?

So I had an ultrasound to look at the uterus, ovaries and cysts (which involved drinking 48 ounces of water, and feeling like I would pee the table, just so my bladder was full and they could see the cysts better; f-ing tests…).  Then I got the results.

This was the phone message from Dr. Rogers: “Everything looks normal!  Have a good day!”

WTF?  When are newly-occurring cysts on the ovaries of a breast cancer patient who wants to have kids NORMAL?

After a long game of phone tag, reassurance from my chemo nurse (still every three weeks until July) that cysts are normal, I finally spoke with my doctor.  “Your cysts are 2.4 cm and 2.6 cm which is a little bigger than usual.  Call us when you get your period next and we’ll be able to look at them and tell more from there.”

That’s not the same as “normal”!  Normal is a terrible word, Doctors.  Normal is a joke.  Cast it from your vocabulary.  Stupid normal.

Where are we at now?

I’m awaiting a call from my oncologist to hear if there is a potential correlation between Tamoxifen and ovarian cysts (lord knows I’d love to stop taking that crap BUT it’s potentially improving my chances of survival).

I’m awaiting the triumphant return of Aunt Flo for round 2 post-chemo (BUT cysts on the ovaries can mean irregular cycles and thus the calendar will be useless in determining when this will be).

And I still don’t know what’s going to happen with having kids.  I thought I had made great strides with my oncologist when he had told me new studies indicate that tamoxifen is effective for 7 years, instead of the previous 5 years, and I had nearly cried and said, “but I want kids!” to which he finally replied that yes, well, life does go on and that chemo was my best bet; tamoxifen was just an added benefit.  I thought we were finally edging away from drugs-drugs-must-take-drugs-through-all-your-best-reproductive-years and towards a happy have-a-baby-sooner scenario.  Yet here we go again.  All the ups-and-downs of this particular part of cancer are the hardest part.  I would do chemo over and over if I was just given the chance to have a child and be alive to see that child grow up.  But to have to choose…

Every Doctor says the obvious choice is my life, that that is most important.  Because if I’m not around I won’t get to see that child grow up.  But as a scientist, this absolutely baffles me.  That line of logic is completely backwards.  All living things–for the most part–are programmed to do three things: 1) eat; 2) seek shelter; 3) reproduce.  That’s how extinction is avoided!  To tell me that my survival is more important that producing a child goes against what I believe to be one of the reasons I exist.  I think they call that maternal instinct… though it may be an extreme analysis of it.  🙂

I think about this every day.  Most of the time I stay busy with work and wedding things or reading and watching tv and hanging with my boys.  But I always come back to this drive and desire to have a family; it’s what I should be focusing on at my age.  I’m just waiting to take the next steps and see what the medical community has to say and see what my body has to say and see what time has to say.  I’m trying to finish chemo (July) and take a much-needed vacation (September) and plan a wedding (October) and fuel a career (always).  But through it all, there’s always the baby question…

And the answer isn’t here yet.

Because if the answer is that I can’t have kids, well, then, I’m too stubborn to listen.  And the universe should know that by now 😉

Your Check Engine Light is On

Remember that time you knew a girl who was 28 and diagnosed with cancer?

Remember how she found a lump and realized something was off and then went to the Doctor, who confirmed her worst fears?

It may not have been a fun day, week, month or year but it was a necessary situation; you are responsible for your health.  You are your number one advocate.  As much as we would like all Doctors to be omnipotent, they honestly can’t know it all about every little symptom and ailment and weird rash.  And they don’t check on you 24/7; but you do.

This is your reminder, folks, to all of you who made a new years resolution to take better care of yourself: I’m checking in to make sure you’re following through.  Did you sign up for that gym membership?  Did you get that constant headache checked out?  I know in my house there are a few people (hm, Sean?) who have avoided the constant maintenance of being a human.

It would be so much easier if, like our cars, humans came with a check engine light to let us know when maintenance is needed.

But we don’t.

To avoid it all, we have to do the things that are not our favorites: eating veggies over fast food, going to the gym or getting some kind of exercise; making time for sleep; getting the weird aches and pains checked out even when our lives are constantly “too busy.”

I once prioritized my life by family, friends, job, vacations, etc.  Do you see that no where in there was “HEALTH”?

And then one day health became my only concern.  Because if it didn’t become number one on the list, none of that other stuff would be available.  Health or death.  Hmmm, decisions that make themselves.

There are some of you out there who have this nagging health concern that either you are too embarrassed about, too busy for or you think it’s “not really that bad, yet” but it’s been going on for months.  Chances are if you tell your Doctor, there’s an easy fix.  Or maybe it’s not so easy but it could make your life easier or better.  Or, I’ll see you one more, it could just save your life.

Cause, yeah, no one likes going to the Doctor.  I mean, unless you plan to be a med student and you like to geek out with the doc or you’re a hypochondriac and you need constant reassurance and someone to talk shop with you might like it.  All the rest of us hate being poked and prodded, being stuck with needles, being asked to lift an arm or cough.  When the eye doctor says “this or this” and “one or two” and he goes really fast, I feel like I am doomed to fail an unfair test; I get stressed out on trying to ace my eye test.  Or try having freckles and going to the dermitologist: I always get in trouble there!  Do they think I had any hand in the formation of my freckles, should I have stayed inside and fully covered at all times for my whole life?!

Since Sean is now my fiance, he has basically signed his life over into my hands for use in creative writing; in this case, he will be the example of what not to do.  He hasn’t been to the dentist in years nor the skin doctor.  And with his fair, red irish skin and history of skin cancer, he needs to go regularly.  But no one wants to go to a place that is going to have a strong likelihood of giving bad news and/or costing a lot of money for that bad news.

“Ignorance is bliss” is not just a clever saying, it’s true.  But it doesn’t buy you years of life.  Doing the things we hate buys us the years.  When you die, you can’t take all that money you saved by not going to the Doctor with you!

So call the Doctor and make that appointment, no dillydallying.  Even if you put it on the calendar for a month from now, and you have to ask for favors at work to get the day off, at least you’re taking what little control of your life each person can have.

As for me, things are…

Well, things are up and down still.  I have chemo every three weeks until the end of July and I hope to get my port out by September because Sean and I are getting married in late October.  I still struggle with Tamoxifen, a drug I take daily that causes unrelenting hot flashes and night sweats and insomnia.  To counteract it, I still take a light sleep aid but am advised to get off it sooner rather than later.  It’s a catch-22: every night that I skip taking it, I have a restless night of sleep with whacky dreams and constant waking up (and then I’m exhausted at work); the next day I must choose between sticking to it and another restless night or breaking down and taking a pill to ensure I can sleep. This past week I made it three awful nights without taking anything and was exhausted by the end of it; my day off was wasted sleeping and resting all day since I was too tired and crabby to do anything useful or fun.  It makes work and wedding planning that much more stressful; life is challenging without adding lack of sleep to the mix.

I want so much to stop taking this pill and reclaim my sleep but there’s always that nagging thought that my chances of long term survival depend on me taking that drug for five years.  Not one, not two: five.  I’ve heard from women who have been on Tamoxifen and have still had cancer come back.  So how do I determine if it’s really worth it for me?  If I don’t take it, I’m a quitter and I could die; if I do take it, I wont be getting a normal nights sleep for five years.  It’s a big gamble with both choices not so great.

Friends and family (especially mom and Sean), if I’m crabby to you on the phone or in person just remember that I don’t sleep like the average human and chances are I’m exhausted.  Just cut me some slack on a few things.

On a side note, Sean and I (ok, mostly I) are planning our wedding for October 27, 2013 in Maui!  Something to look forward to 🙂

Now, call your Doctor and choose water over that soda.

(P.S. Sean did make one wonderful health choice: he gave up soda!)

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“I like your haircut!”

“I like your haircut.”

I’ve gotten that a few times from acquaintances and guests who don’t know the whole story behind my “haircut.”

What to say?  Usually, I just say thanks; but simultaneously, a flood of silly-non-grumpy snarky comments come through my head (because, you know, that’s the way my brain works!).

“Thanks… cancer did it.”

“Can’t wait for it to grow back.”

“I had no choice!”

“Oh, yeah, I went Britney crazy.  Shaved it all off.  Can I order a smoothie?”

“Thanks!  My stylists are Cancer and Chemo.”

There’s always a little one second delay as these responses float through my mind.  And then I smile, and go with the simple, “thanks.”  Because these are people who don’t know me as a cancer survivor and sometimes that kind of anonymity is nice.  They may see my tattoo later and put it all together or hear a wisp of conversation about it but for that moment when they see my hair, they just think I woke up one day and said, “to hell with long hair!  Too much maintenance!”  And that I willingly chopped it all off.

People that see me intermittently are amazed and excited when they see my hair growing in.  I can almost hear the, “phew, she’s not sick anymore” go through their minds.  Like, woohoo, close call but we’re in the clear now.  These people have wonderful big smiles on their faces.

The people that see me frequently can’t even remember that I once had long hair!  The absence and subsequent growth is so every day that it’s just part of life.  I’ve had a few folks tell me they saw pictures on Facebook of long hair (just a few months ago, that was!) and they didn’t recognize me!  The short spunky no fuss hair matches the don’t mess with me attitude, for now.  My hair will continue to grow in–and I will continue to let it, and not cut it–and the personality will continue to fit.  And pretty soon (well, more like in a few years since my hair grows so slow) it will look just as before.  And cancer will be a distant memory…

I am still on chemo every three weeks until August and then I hope to get my port out.  This chemo is a breeze–no side effects and it only takes an hour at the oncologist!

I started the oral medication Tamoxifen that I will likely take every day for five years and I am happy to report that side effects are minimal! The night sweats slash hot flashes and insomnia are no where near as bad as they were with the chemo drug Taxol.  THANK GOD!

I’m in smooth sailing territory and as the Doctors report, I’m cured.  Cool.  I like that sound of that.

I feel like I have lived a lifetime in the last ten months; that diagnosis in March feels like it happened twenty years ago.  My, how time flies.

I am back to work full time and feeling good.  I’m back to being busy while still getting massages and pedicures, playing with the dog, reading, hiking, snorkeling and playing with friends.

I see hundreds of people a day come out on the boats and through the programs I teach as a whale and environmental naturalist guide. And I have seen and continue to see every kind of personality combination and then some.  I look at people a little differently now; I’ve always been empathetic and intuitively perceptive towards peoples’ needs (I even got high scores in the “caring” category during annual reviews at my work!) but now I look at these people and take a moment to remember that there is so much more depth to what that person and each of us experience in life.  For the moment I interact with them, it may just be such a small moment.  But life it a culmination of all those small moments.

And as Ellen says, be kind to one another.