Ocean Institute

In the midst of all this talk about health care, I find myself wishing I had done one thing different in my life: when I was a Program Coordinator and then an Assistant Director at the Ocean Institute in California, I wish I had raised a bigger stink about better benefits for the instructors.

You see, these instructors are talented and intelligent people—often fresh out of school—who dynamically educate hundreds of students (germ factories, mind you!) each week on the merits of California state history, ocean science and responsible marine stewardship.  Lets pause right there and recognize the true depth of what they do: they are the ones who inspire your children to care about learning; to care about history; to care about science; to care about the planet, the ocean and mother nature; and to, basically, use that caring nature and appreciation to become better human beings.  Ultimately, they are the cool field trip teachers who are real marine biologists and living history characters that act as the catalyst to spark those AHA! moments for children who will, in the future, stop global warming, save the whales in the southern ocean, protect endangered species, eliminate plastics and find the cure for cancer.  That’s how much I believe in what they do, because of their talents and skills and because of what the Ocean Institute represents.  And, yes, that sure is a ridiculous amount of pressure and hope but it’s real.

In this day and age of our world, nonprofits exist as pillars to what we believe to be our basic morals; or what is the right thing to do.  Whether it’s for the environment or world health care or a specific endangered species, nonprofits raise money and awareness for these causes.  Nonprofits are also held to the highest standards in other areas as well.  And for this specific blog, I am talking about how we treat people and more pointedly how a company treats its employees.

Nonprofits—or not-for-profits if you prefer—by nature, are poor.  Or, at least, constantly struggling for money.  I know this to be true at my current company as much as the Ocean Institute, only the Ocean Institute struggles further because they rely on schools in part for funding and the California school districts constantly and continuously cut funding not only for school field trips but also to their teachers’ salaries and school supplies.  It’s not a pretty picture and it begets a situation in which many of the most talented employees—instructors and coordinators and up—are working harder and on more projects but for less money in an already expensive-to-live-in state with an inflation-based world economy.  In a nut-shell, all the people I call my extended family, who were there when I began my post-college career as one of those talented and intelligent instructors, are working so hard with so little.  And they deserve so much more for all that they do.  Living and breathing and teaching morals to future generations can be a thankless job; but they do it because it is what is right.

Do you know how exhausting it is to teach?  To teach children?  To teach children an entire lesson plan in two hours?  To be captivating?  While making sure they do not cut off their fingers chopping onions on the Brig Pilgrim?  Or to make sure the first graders don’t shove the bendy camera into the sea urchin as the kids learn about classification?  Or to make sure they don’t slip and fall on the rocks while tide-pooling?  Or imagine this: these instructors are expected to take 20 sassy sixth graders on a hike in the dry chaparral climate of southern California to teach them about using humidity to classify ecosystems while making sure the kids listen, don’t fight and don’t flirt, while making sure the chaperones are assisting and not having their own conversations, while making sure the kids don’t pass out from dehydration, while applying band-aids to the kid who fell, while watching for bees because one kid has en epi-pen-severe allergy, while watching for mountain lions and rattle snakes, while making sure they are back on time for snack?  CAN WE SAY MULTI-TASKING RENAISSANCE-MEN-ESQUE INSTRUCTORS?!

And a side note to any instructor reading this, before your head explodes on how impressed with yourself you are and before you go ruffling any unnecessary feathers, we shall all stop to recognize that every person is capable of working hard, doing their jobs well and being the change they wish to see in the world.  I use this blog to single this job category out because I was there once and I know how it feels to be bright eyed and hopeful of the world and to work so hard doing a job that makes you feel good about your impact on the world at large but still feel like you’re not making any financial headway.  I would say I have been doing just that since I graduated college with my allotted pile o’ debt in student loans and subsequent credit card bills.  And only recently, with some blessings, have I made major progress with squashing down that rearing angry debt.

My cancer diagnosis in March and my following chemo treatment that began in early June has been the most difficult chapter in my life to date.  But it has been a blessing too.  Mortality knocked at my door and I am hopeful in saying that I will beat this but I hesitate to commit fully to that statement.  Being so young, my cancer is aggressive and its origins or cause are a complete unknown; it could come back at any time.  With cancer, it’s tricky: we’re never “out of the woods.”  It will be constant screening for me and a very in-tune self awareness, watching out for when my body is being a weird-o or listening to my intuition if it tells me something just seems off.  But it is also an opportunity.  In the last few weeks, all the clouds cleared for me and all of a sudden the crap that wasn’t important melted away and life became alomost easy.  I know exactly what is important to me, and more importantly who is important to me.

Put other people first (then whales and endangered species and elephants because they’re cool and smart; just teasing!  We’ll work on this list another time!).  Take care of each other.  Cultivate a sense of community.  Protect what you love.  Teach future generations to appreciate what is rare and beautiful and vital to our survival and our appreciation of life.  Care for the environment because it supports us.  Keep the ocean clean because water is life and we have explored our moon more than our oceans.  That’s it.  If you take nothing else from here, just take that.  I even made it bold so you can skim the whole blog and stop here.

I am going to ask you all to do something in a moment; yes, more homework.  I am not going to ask you to yell at Japan to stop whaling in the southern ocean (but you can if you want, we’ve got a petition at Pacific Whale Foundation online).  I am not going to ask you to pick up trash on the beach (but please do).  I am not going to ask you to stop supporting every single company—of the 50 or so there are—that is owned by Monsanto (though, do consider this).  I am going to ask you to financially support the people that inspire all of the children who will help to accomplish the above-mentioned tasks.

And, Daniel Stetson, I am asking YOU, as the president of the Ocean Institute, to consider your employees.  I am asking YOU to look at them differently.  Not because you did it wrong when I was there but because they deserve so much more.  Whether you determine it to be improved health care available to every single employee who works 20+ hours per week for four consecutive weeks from their start date (by Hawaiian State law, this is why I have the health insurance plan that saved not only my life but also prevented me from having $50,000 in debt from my surgeries alone; this is my personal request and crusade); or an allotment of paid sick days for each instructor for when they have been coughed on by 30 children and they just need a day of rest and a prescription of antibiotics; or a kinder clause with financial safety in the employee handbook about time off to care for a sick or injured family member; or paid vacation for your instructors because not only do they deserve it but after some of those students, they need it!; or raises for employees because, hell, most—if not, all—of them have college degrees or equal work experience and they sure would like to reassure mom and dad that it was worth it; or a group trip to Disneyland (it is so close).

I know what you’re thinking: money.  Big hurdle.  Don’t worry, I have a plan so hear it out, everyone.

First, Ocean Institute is in southern California and that means it’s surrounded by extreme class division that includes Hollywood celebrities and folks made wealthy by other means.  Ask them for their money.  Inevitably, they have kids and grandkids for whom they would like an ocean to be around for.  And you need an “in” with those celebrities?  Jaden Smith of Will Smith and Jada Pinkett Smith fame attended the Lazy W Time Capsule Program; remind them of that and start there.  Diane Keaton brought her son to summer camp a few summers ago; I know because I called her on her cell phone once to come pick him up early (yes, I was starstruck and yes, she asked me for advice; you read it here first, TMZ); contact her and tell her we need her.  INDIANA JONES—that’s right, Harrison Ford himself, the man, the legend—attended as a chaperone to his son very recently; he bore witness as an unaware instructor used his Indiana Jones persona as a reference during the artifact and archaeology section of our living history program.  If that man doesn’t donate, I would be shocked and disappointed.  I will come personally knock on his door.

Look, I know how budgets work.  I know how pay cuts up top work.  I know how grants work.  Move some things around.  Find the money.  I also know how to live frugally.  And that a few dollars shaved off one person’s salary can make a big difference to many people below.  I recognize that no one likes their hard earned cash taken away from them but do you remember how it felt to have your first job?  To be bright-eyed and hopeful?  To come running full gait out of college, filled with knowledge and eagerness and drive only to be knocked down time and time again because of financial struggle?  Let me tell you, if you don’t remember or you buried the memory, it sucks; and it sucks the beautiful hopeful we-can-do-anything inspirational naivete right out of a person.

I also know that within those instructors and employees, you have all that under-utilized creative energy.  You have on-hand a new generation that operates differently than any generation before.  Yes, my generation loves trophies and needs to be patted on the head more but we also know how to use technology and to network… look at me, doing just that right now.  If you opened the forum to your instructors and invited them in for coffee and said, “look, team, we need new ideas on how to get money into the Ocean Institute.”  I guarantee that you will be pleasantly surprised.  You’re instructors are just waiting to be asked!  That’s it.  Literally, I am telling you, they just want to know that you care about them and that they are important; and you show them that by asking them for their input.  I know in my heart that this is true because I was once in their shoes!

But that’s not enough.  I’m gonna see you one further.

The great Harry Helling told the great Gregory Hermann who told the working-toward-greatness Serena Neff, “Don’t come to me with a problem if you haven’t at least considered the solutions.”  Best management advice.  Ever.  Hell, best life advice ever.

OK, readers, here’s the moment I promised you where I am going to ask you to do me a favor.  You have supported me in my battle with breast cancer from the beginning; when I couldn’t find hope, you kept the candle burning for me.  You sent cards and flowers, food and teddy bears, phone calls, emails and texts filled with love, positivity, happiness, prayers and hope, hope, hope.  Some of you said to let you know if there’s anything you can do just ask; some of you even blatantly offered money (some of you just sent it!).  Through a blessing of my own family (and health insurance and disability insurance through my supportive company), I have not needed financial support.  But now I am asking—requesting that—you donate that money to the Ocean Institute.  I believe in that place SO MUCH that that is where I want it to go.  Only, when you call, you must request it in my name so that we may track the impact of my generation’s talents in technology and networking (you know me, always doing research; I will clarify momentarily).

Here’s what you need to do right now:

1. Call the Ocean Institute at (949) 496-2274 and ask for Dan Stetson.  Tell him you want to make a donation to the Instructors Financial Improvement Fund on behalf of Serena Neff (or if you want this done in 9 minutes instead of 10, simply say that you want to make a donation on behalf of Serena Neff).  Have your credit card ready.  I don’t care if it $5, $20, $50, $100 or more.  Just do it.  If you have to cancel your $60 dinner for 2 Saturday night and spend $10 on spaghetti and meatballs so you can give the $50 to Ocean Institute, just do it.  If you have to spend Saturday collecting cans for redemption, do it.  If you have to take used clothes in to the thrift shop for cash, just do it.  Don’t think about it; just get it done.  If Dan doesn’t answer, you leave a message with a phone number.  No excuses.

2. If Dan’s voicemail is full, call Sue Winterhoff.  She’s not only awesome but she’s also HR.  She knows OI inside and out.  She’ll know what to do.

3. When her voicemail is full, call Rick Baker.  He loves rocks and geology, chat it up.  But make your donation.

4. Once you have made a donation—or if you are truly financially strapped, in lieu of a donation—copy this blog link into your Facebook, re-post it, email it to every contact you have who cares about the ocean and the planet and tell them how much you support this idea.  Action speaks loudly.  Immediate action screams.  Take your spoonful of passion (it’s lemon sorbet flavored, perfect for summer heat) and will it onward.

5. Lastly, and at your discretion, email me.  If you simply write “I donated” and nothing more, that’s fine.  If you are willing to disclose the amount, even better (so I can track how many people donate and out much we accumulate).  I can track how many people click on my blog page but that’s the extent of it so help a sister out on this.  My email is serenaneff@yahoo.com and no spam please.

Dan, call me in a week and we’ll chat numbers, we’ll see where we’re at.  Don’t call me today or this weekend.  Don’t call me Monday because I have chemo.  Next Friday.  You can email me though, I can handle email during chemo.

Folks, I am trusting you with the power to change people’s lives.  I am asking you to do something for someone else because it means something to me and it will have long-term positive global repercussions.  I am asking you, as my generation so eloquently tends to put it, blow this shit up.  (You know me, had to throw a curse word in there!)  I am asking you to use your power of connection and networking to spread this thing across the world, because we are also testing a theory.  The theory that my generation is vital to this country because of our commitment to and understanding of technology and social media and networking; we need to set the Baby Boomers at ease, as they reach retirement, that there is hope for the future.  And that we will protect the oceans for their grandchildren and so forth.

If you are unclear in any way as to whether this blog applies too you, let me cover a few groups of people:

Mom and Dad: you are the only ones I will name from the herd because you are the ones who set in me the difference between right and wrong.  You taught me to fight for what I believe in.  You taught me to appreciate nature.  Now I ask you to be the example and be the first to call Ocean Institute and make a donation.

My family that lives in California, Colorado, Wisconsin, Florida, Massachusetts, Vermont, etc: you have to do this because I am your sister, neice, cousin, second cousin, etc.  This is what families do: they pass on traditions.  Welcome to our newest tradition.

Anyone I went to high school with; anyone I went to college with; any friend and/or neighbor from Lake Winnipesaukee; anyone I went to Australia with or met in Australia (we share oceans); anyone who is overseas, I do not know how to call overseas but since you read English, I will assume you speak it and that you have some connection to the US and that, therefore, you know how to make a call to California!

Anyone I have ever worked for or with: we’re all connected on this planet, make it happen.

Anyone who loves the ocean, Maui, Hawaii, whales, dolphins, children; anyone who has children; anyone who has grandchildren; anyone who every met and/or saw a child.

Anyone who ever had a teacher that changed their lives for the better.

Anyone who wants to leave a legacy that is steeped in protection and love and not destruction and waste.

Any and every single human being.

The only people who are not advised to donate are the instructors.  Whether you’re starting out at OI or elsewhere.  Listen to me, you’re time will come but it is probably not now (unless you happen to be independently wealthy).  Save your money for bills.  When you are financially stable, then it will be your turn to help the next round of wonderful instructors,  For now, donate your time where you can, take a break when you need it.  You’re human.  And you deserve a massage every now and the; kids are exhausting!

Let me be 100% clear: this money is not for a new dock or a new boat or upgrades to the facilities.  It’s not even for the inner-city kids who need funding; we’ll do that another way (remember, Indiana Jones, his donation can go to the inner-city kids).  This is for the employees, the catalysts of inspiration.

If you need to make sure this place is legitimate, or you want more information on why I love this place so much, check out the web site: http://www.ocean-institute.org

My life goal is conservation in action.  This is how we do it.  I finally figured it out.  I just need your help.

Plus, my birthday is June 30 (tomorrow!) so this doubles as your birthday gift to me, on top of your cozy feel good feeing of doing the right thing.

Thank you and mahalo.

P.S. Pick up your phone.  Now.

And always remember, Ocean Institute instructors are FUN!  Thanks, Ash, for your mugshot!


There There, Hair


No sadness, but it appears as though my noggin hairs are shedding at a much faster rate than normal.

In the world of cancer reasoning, we take this as a good sign: if the chemo is powerful enough to kill my hair cells then surely it must be powerful enough to kill the cancer remnants!

Pretty soon, I will go through the styling/sheering routine, which will likely be done all at once with photos for future reference.

Step 1: Bangs.  I haven’t had them since high school so why not see what it looks like these days!

Step 2: Mullet?  Sure, why not!  Sean’s request.

Step 3: Mohawk!  Bad ass.

Step 4: Shave it off bye-bye.  Bald is beautiful as my friend says!

This is my opportunity to exercise a little control over my treatment; I decide when my hair goes once and for all even if chemo is easing it out.  Plus, I’ve always wondered what my skull looks like.  And my hair is two-tone colored so now I don’t have to worry about dying it to all one color.  Lastly, when it grows back it could be a different color and texture; fun, exciting, mystery.  We’re looking at new hair in about 4 months, as the final round of drugs should let it grow back.  So that means new hair for Christmas!  Thanks, Santa, you have my request and I got it in real early this year!

You have a little homework too:

1. Have you done a boob check lately?  Have you checked in with your Doctor about that weird symptom you’re not too sure about?  Yes, there is a calming effect in the blissful ignorance of not knowing but if you have an opportunity to improve your health and experience more out of life, why not take a stab at it?

2. Be on the look out for cool head wraps for me!  I live in Hawaii, it’s summer and it’s hot so I do not think at this point that I am into wigs.  But scarves and hats sound good.  Pretty teal and blue and purple things, things with whales and ocean stuff, maritime and sailing scarves.  Whatever you find, and only if you want to, send it my way!  This is voluntary but your homework above is mandatory!

Finally: Hope

Today I finally learned that important lesson: Cancer is not a death sentence.

I will always be looking over my shoulder but I will not allow it to make me forget to live and enjoy life.

The two weeks following dose one were all over the board.  I did not get too many of the classic side effects; instead I received many of the weirder, harder to classify ones.

Some days I couldn’t focus my eyes back and forth from the TV far away to my cell phone in my hand, it took a little extra time and effort.

Some days I was so foggy and hazy in my head I felt lost.  I felt like I was losing my self, my personality, my intelligence.  The one hobby I have followed through and through in life, that goes everywhere with me, is reading books and I couldn’t even read a book!  They call this “chemo brain.”  It comes with slight forgetfullness, like “what was I supposed to get?” but then worse because I forgot not just the item but the getting it part too.  Mom says she gets this some times!

Some days I was weak and tired with the slightest movement.

And some days my brain was raging in a washing machine of doom and gloom emotions, trying to understand all of this shit, the mental anguish of is this the drugs making me crazy and will it ever go away.  At one point, I was in Walmart and I found myself overwhelmed with anxiety at just being there; I felt so out of it.  All I wanted to do was put my arms out straight and run through people while screaming back, “It’s OK!  I have cancer and I have no idea why, but I need to do this!”  So weird!  No one tells you about the emotional roller coaster that comes with high dosages of drugs that could kill you coupled with trying to understand a disease that could kill you.  Maybe they should have added a psychiatrist to my pre-chemo prep.

Thankfully, I mean thankfully, the last few days have been amazing.  I mean truly great.  I have felt like my old usual self: human and upbeat, conversational, interested in doing things and able to do those things, optimistic.  It felt like the light at the end of the tunnel finally existed.  At last, chemo didn’t feel like a never-ending mystery torture chamber: there was an end to the personality-dimmer switch.  It takes a lot of bad days followed but just a few good days to erase the crazy.  Phew.

Though I must warn–a warning that I too have to keep in mind–that even though I feel great, like the drugs are fully flushed out of my system, chemo is cumulative and today we just added another layer, another dosage.  I could have different side effects or new side effects or at a worse level.  Luckily, the nurses told me my body handled the drugs amazingly well (and like the good rule-follower I’ve always been, I did all the at-home treatment to the T).  I could also–to give fair due credit to the other end of the spectrum–feel the same or better this time around.  Though, there is the false nagging belief that there must be a correlation with the worse I feel meaning the better at kicking cancer’s ass these drugs are.  Otherwise, I will just have to resort to Jedi mind tricks to take down cancer cells.

I still have to worry constantly about germs.  I used to NEVER wash my hands except in public restrooms but then Ashleigh made fun of me (how long ago was that, Ash, 4 years?) and called me out on it so I became better at it; now I am even better!  After potty, petting dogs, handling money, touching any questionable surfaces.  I have to stay away from crowds and sick people (and friends, you have to stay away from me if you’re not feeling well!).  One askew germ could knock me on my ass and into the hospital.

Right now after dose two I feel pretty good; Sean says I seem to be handling it better.  The unknown was the scariest part.  That’s really what it comes down to; I know that now.  All these potential side effects and stories from others (which are still very helpful so do not take this to mean that I do not want to hear it… I like to hear the stories and the research, I just have to remind myself that just because it happened to one person doesn’t mean it will happen to me) had me worried and curious and scared.  But I could never know what I was in for until I experienced it.  Oh, I experienced it.  It’s not fun but it’s doable.  And I’m halfway through the hardest part!

I have always been fairly goal-oriented, driven, and optimistic in my approach to and living of life.  But when the Doctor said cancer, everything came crashing down and it just felt like life was over, my dreams and wants were over.  I will never again have the naturally occurring luxury of a false sense of security of good health, a long life and guaranteed survival to geriatrics.  And really, we all know somewhere inside of us that, yes, at some point, each of us will die.  It’s just so much nicer to assume that death will come late in life from old age, after we’ve had our chance to do a whole lot!

But no one promised us when we were born that we would get X amount of time.  It’s anyone’s guess.  When did we lose sight of that?

It’s not fun to have this extra worry; I want desperately to get through chemo and and hormone therapy and be done.  But the “just be done” isn’t a realistic request on this new life obstacle course.  I will have that mentioned above, and constant monitoring over time and somewhere in there I have to create peace of mind.  Otherwise, I will lose a piece of my mind!  Or all of it 🙂

There are so many people in this world living with cancer.  And people living with other diseases and troubles.  We each have to make some kind of peace with the shit we’ve been handed and then get through it.  I believe it’s called acceptance.  I chose to take my acceptance with a side of red velvet cupcakes!  Well, one cupcake for now.

“Acceptance of one’s life has nothing to do with resignation; it does not mean running away from the struggle. On the contrary, it means accepting it as it comes, with all the handicaps of heredity, of suffering, of psychological complexes and injustices.”

~Paul Tournier

All that acceptance is a whole lot easier with a good support system around me; Sean, mom and dad, Erik and Ethan and Lisa, family and friends, friends of friends, strangers who become new friends, even cute puppy dogs who just need to wag their tails to make me feel better!  And when I was still searching for hope, you guys carried me through.  Thank you.

When I am feeling my worst, I focus on all of the negativity: why me, what if it comes back, why so young, why does it have to be the “aggressive” kind, why is there no machine to tell me exactly where it is in me down to the individual drifting cancer cell (yeah, I didn’t say they were all totally rational thoughts), what if I look goofy without hair, ugh it will take forever for my hair to grow back, what if my hair starts to grow back but then the cancer comes back and I have to do more chemo and lose it again?!?!?!  Oh, the thoughts are poisonous little beasts!  Like I fell into a pit of rattlesnakes with their venomous bites and I can’t crawl out.  (I like snakes but in the one-at-a-time and out-of-a-cage style; not in the pit-of-hostility-and-venom way!).

The good news is that when I am feeling my best, I focus on all of the good things: I caught it early (that’s my false sense of control coupled with a dose of hope since it was me who found it; did someone up in heaven help me find it?; did the universe step in?), it was small, it was only in the sentinel lymph node and not detected further in my nodes, it sucks that I have to do chemo but maybe we’re treating nothing because it’s actually all gone, I gave up the boob so there is less area for cancer cells to harass in that area, I’m halfway through the toughest part of chemo and there were good days in there, I did well on my blood tests (striving for better next time via healthy diet when I feel good in the tummy and vitamin B6 to prep for the next round o’ chemo).

I’ve always been on the optimism side of things and this diagnosis has really challenged that feature in me; I am overjoyed to know that it’s still in me, that cancer and chemo didn’t take it, it was just buried under some shit and needed some finding and dusting.  Hopefully, knowing that I can find it again will carry me through the dark days hidden on the chemo trail.

It’s not easy.  There’s no guarantees.  It’s life.  So lets just do this.

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.”

Dear Body

Dear Body,

I know we haven’t spent much time doing drugs–both legal or otherwise–but you’re about to be inundated with western “medicine” and I hope we can work something out so that I’m not puking my guts out and shitting my pants.  I’d really like to avoid that aspect of our upcoming regiment!  Just a small favor, right?

Now, to let you know what your in for let’s briefly move head to toe.

Head: hair.  Currently have: will lose.

(Man, I hated those on SATs.  When in “real life” have you used that?!  Find a new way to test me on my definitions and cut this brain twister BS out!)

Yeah, about that.  I know we’ve been told there are many tricks to keep it but do we really need to put ourselves through more trouble?  Do we need to fight the inevitable?  It should only be for about five months and then it will grow back, and maybe even nicer!  And in the mean time we get to experience many hair styles as we sheer the current situation down; then with wigs if it’s not too hot or creepy; and finally as the new locks sprout back in.  And we get to see what my skull looks like which we haven’t seen since birth.  Plus, in a perfect world, I wont have to shave the legs for a year plus!

Mouth: sores.  I have nothing to say other than I am bartering with the devil and God to keep that one away.  Whoever makes a better deal, I’m in.  And if no one comes in on a deal, I promise nothing spicy and lots of popsicles!

Taste buds: sorry, fellas, we’ve had a good run.  Looks like you will be out of rotation for months with the possibility of never returning.  While I hate the thought of that, there are two good things hidden in here: 1) I might be interested in foods I didn’t like before, such as mushrooms, and 2) bad smells might not be as overbearing as they once were, like BO and Sean’s farts.  Cool.

Tum-tum: Oh, buddy, you’re really gonna take the brunt of this.  But do not fret too much: the Doctors will give me three–yes, three–anti-nausea drugs before we start chemo injections each time and then two more to take at home for a week, each time.  I’m pretty sure that is their gentle way of saying this puke thing is serious business.  And I got you a cool Aloha (puke) bucket just in case those don’t work!  We will also practice much mind over matter meditation.  I have chosen plenty of soft and mild foods for your enjoyment and have found a lovely spot on the couch that is simultaneously near the bathroom and near the kitchen–it’s an equidistant run to either, whatever your needs may be.

Pooper: I don’t think we need to go there, ladies don’t even poop!  Didn’t you know that?  It just turns to sparkly fairy dust.  Whatever you believe, I think you can imagine the potential… outcome… of this topic and I am going to try to avoid this disgusting discomfort.  Gross.  Enough.  Done.  No more.

Skin: Lots of sunscreen when we dare venture outside.  And walking and/or light exercise is vital because…

Heart!  Oh, dear friend, we have been through ups and downs, globe-trotting adventures, diving for lost snorkels at the bottom of Light House at Lanai and I really need you to stay strong.  Really strong for two months.  Once we get through that time, we’ll be in the clear.  We have some hard core drugs to start us off and you’re the star.  I promise to exercise you and feed you heart-healthy foods like Cheerios and such (I don’t know any others).  Game face on starting tomorrow through the end of July.  You got this.

All over skin/body: Well, accident-prone self (don’t worry, body, I’m too blame for this, I have a serious lack of physical self-awareness when in the vicinity of door frames, tables, chairs, cars, sharp and pointed objects, moving creatures and any thing or way that can cause wounds or bruises), it’s time to “be more careful.”  I hate that phrase and I use it!  It really translates to “slow the F down,” “look where your going,” and “use your damn brain!”  I will inevitably move in a shuffling sort of way as stomach retaliates but it is especially important that I am careful to not wound myself because my immune system will be strongly lacking and open booboos (not boobs, in case you read that wrong) will not be able to fend off infection as well.

Note to others: do not cough on me and do not pretend you are not harboring extra germs (and if you are harboring extra germs, we do not need to hang out until you are better!).

That about covers the big stuff.  Of course “I’ve heard it all!” but not really.  We aren’t going to know what more there is until we just get hooked up to these drugs and get round one going.  Then we make adjustments from there.

Body, it appears that there just might be some foreign invaders remaining and to ensure that we can enjoy our thirties, we just have to put up with this immune-system-crashing vomit-inducing uncomfortable situation for bit… Ok, I’ve timed it to the month: 1 year and 2 months.  By August 2013 we should be done with chemo.  I’ll be 31, you’ll be clean and mostly drug-free again (levelin’ with ya: 5 years of [fingers crossed] one drug after all this).

A lot has been building up for tomorrow, for chemo to start and I am at the point where I just want to get this thing going, find out what it will be like, get as comfortable as possible to get through it and just be done with it.  We’ve got 2 months of the vomit/hair loss/heart hard drugs then three months of allergy worry then seven months of the rest (this is my most recent assessment of the timeline as it is very confusing and has and could change at any time!) and then we’re done.  Done with chemo.

Looking forward to the finish line, body!  Hang in there!