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!

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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…

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.

So, How Was That Chemo Thing You Did?

Surprisingly, I have not yet turned into a hairless zombie.  Well, at least not completely.

Chemo sucks.  There is no way to dress that up and make it pretty.  It’s a series of strange pains that you would never know a human body could go through and no matter how the world of medicine prepared me for symptoms and side effects, there’s nothing quite like experiencing it for myself.  And then still there are no words for it.  Plus, add on the mental mind bomb of will-this-work-can-this-work-i-hope-this-works-gee-i’d-really-like-to-live.

To give you an in depth look from the beginning–because really, friends, how many people have yet to give you the close up view of self-poison for survival?–let’s start with all the pre-chemo drugs.

My appointment for round 1 was on Monday (yes, I will have an extreme case of the Mondays for the next few months!) and I showed up with my wonderful boyfriend for support.  I had gone in the Saturday before to make sure my red blood cells were up, happy and ready for destruction (more needle poking, more vein missing but they did finally extract my blood).

Step 1: Lidocaine my port site so we can shove a giant needle in and put more tape on the area (you’d be surprised how much adhesive I find all over my body days after surgeries and tests… I’ve even found EKG stickers on my back, these ones are about an inch big with a metal button in the middle).

I just look away during all of this, the ceiling tiles are real nice right about now.  I am getting used to being poked and hooked up; the nurses are really nice in the chemo center so it goes pretty quick.

Step 2: Anti-nausea drugs times 3.  Five pills by mouth and 30 minutes of an IV bag o’ anti-puke.  They sure are serious about this nausea thing!  And after the fact, I wish they’d be as serious about the mental slowness and general cloud I feel from all the drugs cause that part is what really messes me up.

Step 3: Chemo.  Two giant needles of a bright red Adriamycin, appropriately colored as it will slap my heart around and give it a run for its 28 year old money.  I was peeing red before I even left the chemo center that day.  I was proud to get that stuff OUT but sadly, it was probably just the dye that was coming out and not the actual evil chemicals.  As the drug went in, it was expected that I would taste metal so I ate ice chips.  But I did not taste metal!  Yay, thanks, taste buds, for hangin’ in there; still smelling doggie farts and all.

I didn’t feel any different.  The only thought I had that let me know I was on chemo now was: are we really doing this?  Yup, guess we’re really doing this.  Oh, and the total inner meltdown I was experiencing while in the chair as I thought about this just being the beginning of a very challenging year to come and the ever-present scrolling thought of why why why why why why why why why why why why that has been on repeat since March.  I was a total freaked out mess on the inside and a cool cucumber on the outside; why hello, hermit crab.  I could be a secret agent, I’m that good.  Plus, what’s the point in freaking out externally when I’ve made my decisions; let’s just do this, get it over with ASAP and move on.

The drugs were now floating freely around my body.  I imagined them like tiny Swiffer Sweepers circulating my body and shuffling the cancer cells out.  I’ve heard visualization techniques are supposed to be nice for the over-active minded.  And I’m willing to try anything.  So Swiffer away, drugs.

The next drug, Cytoxan, was pushed over 30 minutes and I was told to let them know if my nose tingled and/or I got a headache. And if I didn’t let them know it would just get worse.

It tingled.  I got a headache.  But it was towards the end of the bag.  That just means that next time they will push it over an hour to minimize those side effects.  Does that mean it’s working?  Sure, sounds good.

Sean picked up all my take-home drugs: two bottles of anti-nausea and 7 days worth of self-administered shots (though, he did do the practice one for me since I just couldn’t do it and he did well) to boost my immune system.  I just think every part of chemo is kinda sucky and gross.  Shots at home?  Sucky.  Anti-nausea?  Gross.

The rest of the day was fine.  I took anti-nausea meds twice a day for a few days.  Tuesday afternoon I felt like I was going to lose my cookies but luckily I fell asleep instead.  I ate when I could, small meals constantly.  When I started to feel a little nauseous, I ate.  It worked.  I might hate ginger ale already though; apple juice works pretty well.

The hardest part came on Saturday and Sunday, the days when my immune system us supposed to start to plummet.  Those days I just felt exhausted.  And then I was frustrated because intellectually I had no good reason to be exhausted, I didn’t do anything.  I didn’t climb a mountain and snorkel all day or work a 50 hour week.  I just woke up, cooked some bacon and almost passed out.  I’m 28!  What the hell.  Fuck you chemo.  I hate that this is going to continue for a year, that next Monday I have to do it all over again.

I struggle with hating that I have to do this and trying to accept it so I can just get through it and be done with it.  And do it well.  Chemo kills my motivation.  But worse.  My motivation is there but it’s out of reach; I can’t have it.  I just stare at it and ask it to wait.  I’m a doer.  But now I have to be a doer of little things.  Like drinking a glass of water this morning.  Booooring!  I’d really like to go snorkeling and go back to work, back to making money and being busy, trekking all over Maui with a cute puppy dog and man-friend.  But instead I’m…. sitting.

It will be most difficult for me, in all of this, to listen to my body and be OK with doing what it wants.  Those inner demons are the little shits that taunt me to do more when I just can’t do it.  Hell, I get winded standing sometimes!  Granted, it’s summer in Kihei, Hawaii at 11am… it’s hot.  Even the dog is passed out.

My hair is still present and in tact but the nurses and doctors say is takes two to five weeks for hair loss and I’m only at one week.  My scalp did tingle a little on injection day and since and it has been itchy.  We’ll cross that bridge when we need to.  It is the look of chemo, to arrive on the threshold of beating back cancer when the hair is falling out and gone.  We’ll see how I feel on that in a few weeks.

“Always remember to slow down in life; live, breathe and learn; take a look around you whenever you have time and never forget everything and every person that has the least place within your heart.”

Who ARE you?

My armpit is numb; I think the new Aluminum-free deodorant made it on but I can’t really feel it.  I don’t stink, so that’s a plus.  And these pain killers make me loopy and relaxed, it’s great.

In these days post-surgery, of waiting for results, managing pain and focusing on simply eating, resting and reading, it has occurred to me that many of you may not know who I am and what I’ve been up to in life. Some of you left off with me in high school or college, some of you have relied on updates from Mama Neff over the years, some of you may know nothing about me, except that big glaring c-word that sits on my chest.

Let’s cover some highlights…

June 30, 1983: Welcome to the world.  9 pounds and 3 ounces, and the youngest of three (we were all fat babies, which is surprising since we’re all tall and skinny!).  I’ve got a big brother six years older than me–Erik–and another middle big brother three years older than me–Ethan.  My mom, Sandy, is/was a nurse practitioner in Dorchester, MA and my dad, Bruce, is/was a director of materials at Data General in Westboro and Southboro, MA.  The parentals are retired now; they have become my personal care system… good thing I ended up in Maui and not Minnesota!

We spent summers and ski weekends on Lake Winnipesaukee in New Hampshire.  I picked blueberries and lived in my swimsuit, staring eye to eye with inch long baby fish for hours on end.  My career was set before I even knew what career meant (or job for that matter, though my first job was selling blueberries and big thanks to the neighbors, my only customers).

I was a quiet and curious baby (yeah, like I remember, it just sounds good).  Growing up, I was always shy and observant, watching my big brothers do boy stuff and remembering how not to get caught for things.  By the time, I came of age and was interested in parties, the reigns of parenting had lightened anyway.  Plus, let’s be honest, I was never really the badass rule breaker.  I did well in school, I worked hard, took AP classes, I always did my homework; I was an obedient rule follower (most of the time).  I had a great circle of friends at school and was focused on academics.

I did figure skating and gymnastics as a kid but never really stuck it with organized sports through high school.  I got into kickboxing for a while with my friend Maris but that was about it from the sports side; I left that to the bros.  I was a very emotional teenager and have continued such as an adult.  When I was young, I couldn’t understand it but as I’ve matured I’ve learned that I am very susceptible to the expectations of others and that my ability to empathize with others is overwhelming: I take on other people’s emotions in certain situations but then need extra time alone to process those out and then process mine out.  It can be exhausting!  But it led me to my interest in psychology, customer service, and management.

Junior year of high school I decided I wasn’t going to college.  Wrong!  Not an option!  You’re going!  Ok, mom and dad.  I dragged my feet a little but figured it out.  I decided I wanted to study nothing…….. except marine biology.  One foot on Roger Williams University campus and I knew I would be applying early and only there: right size (small undergrad community), right place (Rhode Island, far enough from home but not too far, on the water), right feel.  I met another group of amazing people who grew into life with me.  It is my strong belief that college isn’t just for academics, but more for learning how to be an adult, how to F up (how to fail your first class because when the hell am I going to use calculus in my real life?  Stupid calculus), how to make good and bad decisions; oh, and how to do all that while on scholarship.  And while doing two years of early morning crew (rowing long boats while watching harbor seals) club sport.

During my senior year, I lived out a lifelong dream: I studied abroad in Australia and SCUBA dove the Great Barrier Reef.  In retrospect, it didn’t live up to the hype.  The reef was trashed where I went but I imagined that that the rest of the reef, where people don’t usually go, was pristine.  It’s an unrealistic hope in this day and age but it’s a driving force in me wanting to tell people to protect the ocean.  Kim, Jo, remember the creepy diver man with the belly button ring?!  Note to men: don’t get a belly button ring!  Gross.  I thought that was a given.

Post graduation, it was the big “now what” question.  Well, shit, I’ve always wanted to live in California (I strongly disagree with cold weather and humans subjecting themselves to it all the time), time to apply for big girl jobs there.  Thirty applications later, I ended up with a job at Inside the Outdoors as a naturalist for fourth graders in Newport Beach, California.  I drove cross county with my future roommate Veronica and we met Laura as we were signing the lease: all new imports to CA.  Big scary steps taken for the sake of adulthood.

Within two months I was at a preferred job, instructor at the Ocean Institute in Dana Point, CA.  I was taking my marine biology degree, throwing in my psych minor and teaching all age groups about science and California state history.  I was working on boats and watching whales and dolphins and encouraging understanding and conservation.  I was living more dreams out.  I was meeting like-minded people.  Over time, I became a coordinator in the Outdoor Education department, then a co-Director with my friend Sara.  Finally, I jumped into my favorite role as Assistant Director to the At Sea department.  Basically, you add a lot of budgeting and big kid stuff to the fun teaching and program development stuff and stir it up with some fishermen hating Marine Protected Areas and we call it my job.  And I will still call some fishermen from there ignorant to their impacts on the ocean.  Those jerks.

Three years with the company and it was time for something, somewhere new.  My friend Ash had moved to Maui and started working for Pacific Whale Foundation.  She said apply and I did.  Time to jump farther from home, cross the Pacific and start staring at 45-foot long humpback whales.  Endangered species in paradise and a full platform to encourage conservation through education?  YES, please!  I work on boats and take people snorkeling and whale watching.  Yes, I also clean up a lot of vomit (A LOT) and assure people that yes, the waves normally get this big and no, you wont die.  That may not be my favorite part but the opportunities to learn and love the ocean out here are limitless.  Learning (not in a forced classroom setting) is still a passion of mine.  Smart and a smart ass, right?!  Plus the people I work with are incredible.

“We do not inherit the earth from our ancestors, we borrow it from our children.”  ~Native American Proverb

Currently, I also work as a naturalist at the Ritz Carlton Kapalua.  It is refreshing to work for my first FOR-profit.  There is definitely a difference but customer service (there’s that psych degree again) is what it always comes back to.

After being in Maui for six months, I met this man.  You know his name, Sean.  I had planned on giving Maui six months and then maybe moving on and back to the mainland but he threw a wrench in there and I decided to stay.  He’s not at all the person I thought I would be with–tattoos everywhere–but that’s not all he is.  I’m gonna tell them, Sean, who you are.  And you can’t stop me cause it’s my blog!  But I wont tell them every mushy detail.  Sean is the kind that looks badass (and he can be) on the exterior but he’s all sweetness on the inside.  He has a heart of gold and is the most caring person I know.  He’s also the best gift buyer too because he gets people; he’s interested in psychology more than I am and he’s a natural at reading people.  He loves the ocean and snorkeling and diving (he just passed his dive master test yesterday!).  He is kind and patient (I started this blog on his birthday, he is very patient).  And I know that Sean will be here with me through it all.  Plus, we have a dog child (Scupper, black lab/ridgeback mix, 5 months, perfect) together and our dog child doesn’t know us as Serena and Sean but as mommy and daddy.  Yeah, we’re set for life 🙂  I love him and our little Maui family.

 

 

 

 

 

 

 

 

 

 

The only thing I can’t get to fit in here (dinner is almost ready and my parents have been interrupting me every five minutes, I think they are checking me for signs of life) is every person in my life that has touched my life and made me who I am.  Last I checked, this thing had 1,300 views.  So all of you, every one of you would be in here but I just can’t start typing all of that!  Here, let’s do this.  Just write your name here: I love _______________ and I think that covers most of it!

I’m sure I’ve left out some details but that’s where you come it.  Your homework (aha, you thought I was done assigning boob checks and the like!) is to remember a good story and reminisce and then go on with your day.  Something that makes you smile, preferably.