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.

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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!

Good News Whale Deserved!

I saved up all my super good juju for now, it seems!  I finally get to share a few bits of good news… and a new haircut!

PET Scan results: no lingering, hiding, lurking, waiting cancer found!  My liver checked out OK (still just a lumpy bastard) and my left femur bone by my knee is cancer-free too.  Wootwoot!  Now we just focus on the invisible possibilities that could be floating freely in the Serena ship.

BRCA genetic testing results: I do NOT have the mutation in BRCA1 or BRCA2 associated with breast cancer!  This doesn’t really change my treatment–and I still have no clear reason to place the blame o’ cancer–but I am also able to breathe on the fact that I do not have an increased risk for ovarian cancer!  Yay!  No one is saying “hysterectomy” in my presence, for the time being.  I also like to hear that I do not have a mutation.  Ok, ok, well, at least I do not have a mutation that has been proven.  Yet.  I will do another test for yet another gene’s mutation associated with an increased risk of multiple cancers, as it could change my thoughts on radiation (which is still recommended).

Hair has been cut!  Here is the new ‘do:

 

And for reference, the old hair that is no more:

No pixie or faux hawking or shaving of the head just yet but surely those are the next steps!  Thanks for all the styling points!

Tomorrow it’s off to Oahu with Sean for my third opinion and port surgery (still ugh but feeling better about it).

To those of you on Maui or nearby or even anyone who just feels like coming to Maui for vacation, I hope to see you on Wednesday, May 30th at 7pm at Maui Brew Co in Kahana to say Aloha to Lahaina-side as we move to Kihei, prepare to get on the chemo boat in early June and welcome summer to the islands!  All are welcome, don’t be stranger!

Cancer, You’re Being An A$$hole!

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

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

“I’m start chemotherapy in June.”

“Oh, what for?  Do you have cancer?”

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

“So, you have cancer?”

“I don’t know.”

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

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

A short stint into words…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Serena, you’ve won.. A. NEW. CAR!!!!!

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

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

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

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

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

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

Nuts and Bolts

Subtitle: “The Et Cetera Shop”

(that’s actually a real place, or used to be, in New Hampshire, so I will protect the assumed title rights and not use it as a true title in my blog)

Lets rip this band-aid off right now and just get the bad news out of the way.  And don’t hide from the words “bad news.”  We’ve done this before; just another layer of the onion.

I had an echocardiogram and a CT (Cat) scan to check my organs as part of proceeding with treatment options, making sure every thing else functions, and to kill time while touring the medical system and playing in their machinery.  Experience is the teacher, right?  Sounds familiar…  My heart and lungs and everything checked out just fine… except for madam liver.

It seems that my liver has “what appear to be cysts,” not verbatim to what I was told by my health care team but pretty darn close.  Remember the last time I had “what appears to be a cyst”?  It’s now the reason that I have a piece of plastic and rubber for a right boob.

So pardon me for freaking out, googling, and coming to my own plausible conclusion that maybe I could have fucking liver cancer too.

Sharp intake of breath.

Before we all over-react, read the rest of my story (and then we just have to wait for actual scientific legitimate results).

I googled and found that the first listed symptom is “losing weight without trying.”  Well, last year around this time I went in to Kaiser to use my health insurance one last time for OBGYN fun before I went up to Washington to play with orcas.  The nurse did the usual height and weight and looked up shockingly from my chart to say, “You’ve lost ten pounds, is everything OK?  Is that normal for you?”  Nope.  I don’t own a scale so I would never notice and, sure, clothes may fit differently but that just means shopping for new clothes, which is acceptable to me.  And never enough to where I was worried.  Oh, and I’m sorry if this just pisses anyone off but I’ve never been too focused on my weight except all those times people said to me “you’re so skinny” or “you’re so skinny!”  I know people think it’s a compliment but does anyone think, “oh, your so plump” is a compliment?  I didn’t think so.  Have you every wondered if maybe I wished I wasn’t so skinny?  Yeah, body image issues go both ways, folks (sorry if I just slapped you on the wrist; I got it out and I think we’re all cool now).  But I could come up with twenty excuses, musings and thoughts as to why I lost weight… sweating my body weight out through work in the hot Maui sun, going from partying around the Maui bars to pretty much one glass of booze a week (no lie; this isn’t like when you tell your Doctor, “oh, I’m a casual drinker” when really you sling back three glasses a night five nights a week, which is your little secret, our little secret) since dating man-friend, gradually ceasing surfing and losing muscle mass.  It all sounds reasonable but her comment continued to nag on me this whole year.

Back to current times, what did I do with this new information?  I finally called back and gave them the “Look, man” speech, recognizing that I know they probably hate when patients Google shit but that I still had my genuine concerns.  And I appreciate that you probably don’t want to freak me out by introducing the word “tumor” but I’m too smart for that (Google told me so).  Tumor is definitely a possibility in my professional well-researched opinion (Ok, I’m basing it on my past experience with the word “cyst” mostly).

The oncologist nurse read word for word from the report, mentioning it could be “mangiomas” or two small cysts.  She reassured me that I should be optimistic and hopeful (is that scientific?) that maybe this really is all it is; 5% of the population has these things, it’s normal.

My surgeon, Dr. Gambhir, must have gotten wind of my freak out (the power of the computers to connect these different departments, just when I thought they didn’t share info!) and called me to give me the more spelled-out science of it: a hemangioma (pardon the spelling, I haven’t googled this yet but she said it like our favorite hero: “HE-MAN-gioma) is like a blood blister on the liver and we are born with them; they are on my right side (yay, more specific info = more believable for my science brain & not treating my like I can’t follow your diagnoses).  There were also many tiny dots on my liver that appear to be cysts or other hemangiomas.  Great.

I’m buying it for now, with heaps of hope.  But I’m maintaining a level of dignity through realism: I don’t need this building block shit of “tell the patient there’s something but keep it in best-case scenario format and work up from there.”  I want you to tell me the sliding scale of good to worse of what it could be so that I am prepared.  To me, that’s different.  I hate the hope of “looks like this” but “oh wait it’s not that at all; it’s waaaayyyy worse.”

I’ve since researched my liver more.  Found a list of liver-kind foods to focus on (I have a pretty healthy lifestyle so I’m mostly already there).  I have “The Raw Foods Bible” by Craig Sommers which I find scientifically very interesting.  It has a liver cleanse that seems harmless—maybe a little gross—but we’ll see (I know, we don’t want to shock my system).  And to let the looming liver cancer gods know what’s up, I’ve had a beer a day for a few days!  I gotta keep exercising that organ, don’s want to shock it with a booze-free existence!  Plus, I’m still trying to put on the LBs.

And I do want you to know another thing that the oncologist’s nurse mentioned: my weight loss could be a symptom of my breast cancer.

I’m crossing my fingers so hard right now.

My mental approach—as alluded to in how I want Doctors to deal with me—is that if it is cancer, it’s already there.  I can’t do anything to change that.  So like with my boob, we’re just going on from here, towards treatment and improvement.  And I sincerely hope it’s just like the Doctors are saying/hoping, that it’s just cysts.

But with my track record, when is it ever “just cysts”?

And now the band-aid has been ripped off; let us move on to some more nuts and bolts that will make this a smorgasbord of updates.

The CT scan made me almost shit my pants.

Yes, we’re in full disclosure mode here.  I know, you didn’t see that one coming!  Sweet.  I did warn you day one about grossness.

Yup, those drinks are pretty disgusting not because they taste bad—berry flavor is A OK—but because I think on another level, my body knows that shit ain’t normal.  Or digestible.  And it really just wants it OUT.  I know because it 100% told me so [insert gross visual for yourself here].

I asked the tech if it’s supposed to, “clean me out.”  He chuckled and said no but that it does that to some people.  He also said that the CT machine likes chubbier people (ok, maybe he said fat people, but that was between him and I) and that the MRI likes skinnier people.  HAHA.  Well, I hate them MRI machine!  So how does that work?!  And obviously the MRI hated me that one time… (I’m eluding the previous blog “A Bad F-ing Day” in case you’re lost).  Now the CT and the MRI machines and I do not get along?  I was not cut out for being a cancer patient.

And here’s the kicker: since my liver came back questionable, they told me to get an MRI!  Oh, it gets better.  I called to schedule my MRI (I’m always proactive in my medical appointments now because Kaiser has a bad track record with me—and probably many others—of conveniently forgetting to tell me they’ve made an appointment or making one on a day when I fly to Oahu or just plain not making the call to set up the appointment) and they asked a few preliminary questions.  Such as, do I have any implants.  Why, yes, I do!  ERROR ERROR!  We cannot perform an MRI on you because of the giant metal magnet in your boob.  This is like a double-edged sword (is that the right phrase?).  On the one side, NO EVIL MRI!  Yay, winning.  But on the other hand, shit, no clear visual answers about madam liver’s bumpy coating.

Next step: I have an appointment to have an ultrasound.  And, halt again: last time we used the ultrasound on my cystically tumored or tumorically cysted breast, the results were confusingly inconclusive.

So, ultrasound machine, we shall meet again.  Bring you’re A game and give me some damn answers about my liver!  No fucking around this time!

Well, we’ve covered nearly shitting my pants; let’s move on to stinky pits.

This has been a recurring theme ever since mom came out to Maui and threw away my Aluminum-based toxic deodorant that actually at least worked.  I have this thing about smells: I hate bad smells.  It’s really not that complex.  I must have an amazing sense of smell (maybe I’m what’s known in the beer and wine tasting industry as a “super taster.”  Career shift?  Chemo, please don’t kill my taste buds).  Sean has assured me in my quest for nice-smelling armpits, that I don’t stink, but I know I do!   I can smell me even if no one else does; it really irks me.  It’s a personal personal hygiene pet peeve.

I have sampled many deodorants.  No really, look.  Some people collect baseball cards or stamps; I collect deodorants.

Let’s go through the list of what I’ve tried so I can help you.  (And big thanks to a care package from Boston for providing half of the assortment!):

1)    Alba Botanica in “Lavender”: smells nice in the container, pits feel sticky, smell last maybe 2 hours

2)    Tom’s of Maine in “Maine Woodspice” (technically, this is Sean’s): smells great—woodsy and manly, I will borrow it cause it actually works, but I’m still seeking something more feminine and that lasts; doesn’t smell so manly that I would shy away from it.

3)    Tom’s of Maine in “beautiful earth”:  I ordered this on-line seeking another Tom’s that wasn’t apricot (the usual available in-store on-island ladies scent) and thought “I wonder what a beautiful earth smells like?  Floral?  Linen?  A nice breeze?”  It smells like apricot.  I don’t want to smell edible, and I’m stinky again after 2 hours.

4)    Tom’s of Maine in “refreshing lemongrass”: Love the smell!  Stinky after 2 hours, sticky feeling at first.  Hard lessons learned on Tom’s of Maine deodorant products.

5)    Trader Joes unscented deodorant with Cotton: obviously imported from the mainland since we have no TJs in Hawaii (Dear TJs, I love you and you seem to love the hibiscus as your image which is our state flower, why are you not here?  It is unfair.), stinky after 2 hours.

6)    Jason in “purifying Tea Tree”: Ding ding ding, we have a winner!  This is potent enough to last!  And it smells good.  It feels like the tea tree oil is bitch-slapping my underarm bacteria (don’t act like you don’t have underarm bacteria!  You, with your mock disgust, have pit-teria!)

7)    Tom’s of Maine in “wild lavender”: I know, I know, not gonna work.  But as suggested, I just tried it before bed cause it smells pleasant, and I had no plans of running laps in my sleep.

8)    Arm and Hammer Essentials “Natural Deodorant”: Admittedly, haven’t tried it yet; gotta leave at least one for “hope.”

If you had a hard time getting through the results section of this research paper, in conclusion, I support JASON PURIFYING TEA TREE PURE NATURAL DEODORANT STICK.  Go out and buy yourself one.  If you tend to be less stinky than I may be, try one of the other more fun flavors.  And chuck all that other bad-for-you stuff.  It’s not worth it to take the risk even if we still have no idea where the F-bomb cancer comes from.

(Dear JASON, would you like to sponsor me?  I’ve already pinged you as the leader in armpit beautification.)

In other household change news, my cheap Walmart Good Buy brand dryer sheet have been tossed for the more environmental and health-conscious brand.  So many toxins in our world, so little time!  We’re all kicking ourselves in the butt for the wonderful things we invented over the years that we are now realizing will kill us; even if these products give us five more minutes of free time, are they actually shaving of five years of life in the end?  Dwell.  Discuss.

I got to do some normal person things this week, like touring Lahaina-town on a Segway!  Don’t worry, our first thoughts in seeing others on these were: Lame!  Doofus!  But then we got on them (for free through a buddy of Sean’s, always nice to have connections and mutual back scratching opportunities) and realized they are wicked fun!  No, really!  And I did actually get a stitch in my side (more water next time) from the bouncing, and low blood flow to the feet.  All embarrassing, I know.  But remember, still fun!

My big moment of I’m-still-living-my-chosen-life came when I successfully snorkeled at Kapalua Bay!  Post surgeries, I’ve had a hard time lifting my right arm comfortably and without pain (I tried to swim once too soon after surgery and semi-drowned but luckily I was in 4 feet of water and just had to put my feet down; full disclosure).  Snorkeling went very well, I could swim and move my arm and was able to realize I had more range of motion.  We saw eels (my favorite!) in crevices and cruising the sea floor (a bit uncommon to see them leave their cubby holes), a flying gurnard (that’s a rare but badass fish that sits on the bottom and has fins that spread out to look like wings).  It was wonderful to be back to my marine bio roots but bittersweet knowing that during chemo, I will probably be told to stay away from the ocean (I will have to stay away from the sun and with high bacteria counts in the ocean and my inevitable chemically-weakened immune system, I can guess what the recommendation will be about mother ocean).

I’ve been proudly taking phone calls again; sorry for the hiatus.  And know that if I take your phone call, it will likely be on speaker phone as I multi-task my way through this current life I lead.  Usually, I’m juicing orange-carrot juice with and without spinach (and whatever I find in the frig) and testing quinoa recipes with turmeric and peas (pretty good, needs more flavor; quinoa is tough, I must admit, but very healthy and very Aztec/Mayan-chic).

And lets not forget why we’re all here: to laugh.  I’ve currently been reading Tina Fey’s book, Bossypants.  That lady is awesome and hilarious.  I laugh or chuckle to every page, and I completely relate to so many parts of her life and her sense of humor.  Go out and get one (or add it to your iPad or Kindle) and we can read together.  And if you have read it, I haven’t gotten to this part yet, but two very important men in my life told me about a dark joke from Ms. Fey about a pedophile in the woods…

C Word Squared

Well, folks, we’ve reached that inevitable point that all too often comes with the cancer diagnosis: my doctors have recommended the torturous life-saving intravenous drug combination of chemotherapy.  Another daunting C-word.

This suggestion came on the lovely holiday know among Bob Marley fans and those who rocked it in the 60’s as 4/20, or: the day of reefer.  Ironic and appropriate I suppose (I do love my ironies), is this a sign?  It let’s me know that someone Upstairs is smiling down on me with a case of the giggles (and in this instance, the munchies).

I met with my oncologist—my brother Ethan in tow for moral support, to ask the questions when I couldn’t form any more and to listen when I went blank—and the Dr. pulled out the rasta-colored mortality charts and cancer recurrence charts.  Excuse me, but I’m only 28, I still kind of sort of maybe believe I’m IMMORTAL, like I was then I was a teenager and doing stupid things in college (making those bad, immoral, sometimes borderline unethical decisions, all with a beer in hand).  Parents, you know how we are; and remember, you were once immortal too (in each our own opinion).

To show me a chart that talks about my chances of being alive in ten years if I A) choose no further treatment, B) choose chemotherapy only, C) choose hormonal therapy only, or D) choose both treatments is a bit overwhelming.  Why at 28 years of age am I looking at you-could-die charts?  Thanks for yet another reality check.  Anyone reading this just fucking surprised that we’re really doing this?  Yeah, me too.  Those of you that are in my age group–say 5 to 10 years on either side–doesn’t it blow your mind?  Maybe I just need to approach this with the belief–er, hope–that maybe the karma police have thrown this my way now so I can get it over with and then have a healthy future and live to 90!  If only the world was guaranteed to work that way…

It’s been a few months and I don’t feel like I have cancer; my day-to-day health hasn’t changed (other than I have more free time to eat better and walk more, but can’t always do my ocean activities), nothing seems different, I don’t have any open wounds, I’m healing from the surgeries but they don’t make me feel sick.  This disease is bullshit.  And no, karma gods, I’m not asking to feel like shit; I realize that if that does come then I’m really F-ed.  I just have a hard time looking at chemotherapy treatment and saying: yes, even though I don’t see you or feel you, cancer cells, I have to pretend you MIGHT be there and poison my whole body just to kill you off.

Chemotherapy and hormone therapy are know as “adjuvant therapy,” which I will translate for you as “big giant leap of faith because we have no idea what you have cancer-wise and where you have it but just in case you do have it we have to attack it with drugs that have every horrible side effect imaginable.”  That is a direct synonym translation… or should be.

And excuse me if I am being a bit dramatic—I reserve the right to—but as an eco-friendly semi-hippie I do not really agree with opting to add toxic chemicals to my body (have we learned nothing from killer whales and PCBs?  http://www.sciencedaily.com/releases/2007/09/070910094122.htm).  Especially to a seemingly healthy body!  It just doesn’t MAKE SENSE!

But as a scientist, I completely get it.

I know that the drugs may kill off a bunch of my healthy cells, but they should–ideally, optimally, hopefully–kill off the floating drifting cancer cells too.

I finally broke through to my oncologist, after about fifteen questions via phone about having babies, fertility, babies, hormones, when can I have babies, post-chemo health and a drug-free life for having babies, and babies, babies, babies (and let me reassure you I don’t want a baby right now but it’s kind of important for me to have the option to have that experience in my future, my very healthy future), that I am understanding the need for treatment in this form and that I am open to it but that I have other priorities to factor in… like babies!  His response was that he honestly hates the idea of recurrence, of cancer returning, and he’d like me to be around to see my kids grow up.

Yeah, me too.

I can’t create a life if my body is not capable of supporting it in health, and when Sean and I do decide to have kids, it would be nice to know that I will be around for it/them to grow up.  I would never want to say no to an option for survival and then regret it; I’d rather err on the side of doing everything in my power to be without cancer, and to ultimately be with many more years, decades, of survival and existence and life.

But still, what if there isn’t even any more cancer cells floating around my body?

Conundrum.

It is important for you all to know that because of my young age combined with what the pathologists found after my mastectomy, my cancer is considered fairly aggressive.  It went from a 2 at lumpectomy to a 3 at mastectomy.  Yes, not only do I have the usual smart cancer but mine appears to be AP student cancer!   It likes to spread and spread fast.  Bravo cancer!  Next time, don’t be the smart kid who becomes like the uni-bomber; strive to be the smart kid who… develops a cure for cancer or something.  Use your intelligence for good, dear cancer, for good.  (Dear US Government aka Big Brother, if you red flagged me because I typed “uni-bomber”, I apologize; I didn’t mean it.  Please un-red-flag me, I’m trying to save the environment.)

There is a computer program that was used to generate my risk assessment (those troubling mortality and recurrence charts) and shared decision making, and what was entered in and specific to me is:

Age: 28

General Health: Excellent

Estrogen Receptor Status: Positive (most breast cancers are)

Histologic Grade: 3 (was a 2 at lumpectomy; became a 2.5-3 at mastectomy; 2.5 makes me feel better)

Tumor Size: 1.1-2.0 cm (mine is technically 1.4 cm; 1.1 cm from the original mass and an additional 0.3 cm found during tissue-overhaul via mastectomy)

Nodes Involved: 1-3 (damn ranges!  For me, it’s just 1 but they had to select a range)

Chemotherapy Regimen: Third Generation Regimen (the recommendation I believe)

The good news is that I am on the low end, or the better end, of most of the entries from above but we like to “plan for the worst and hope for the best.”

Because that one lymph node was involved, it’s possible that it let a few cancer cells sneak by and travel around my body, where they could still be traveling or have found another organ to harass.  We just don’t know (see adjuvant therapy definition above).

We also don’t know if the mastectomy got it all as I mentioned in the last blog.  I will likely still have to have radiation of the chest wall after chemotherapy just in case the cancer went into—or plans to go into—my pec muscle.  Yup, cancer can do that, smart cancer.

My current treatment recommendation is: Adriamycin/Cytoxan every 2 weeks for 4 cycles (2 months), followed by Taxol weekly for 12 weeks (3 months) with Herceptin weekly then every three weeks for a total of one year.  Followed by radiation of the chest wall.  Oh, plus I need to finish my implant surgeries (likely after and not before since I can’t really have any open wounds as my body wont be able to easily heal itself and I will be prone to infection).  And Tamoxifen (hormonal treatment) orally for five years.  Holy shit.  Is your mind spinning?  I’ve had to ask three times now to be able to somewhat understand this so-called “plan.”  FIVE F-ING YEARS of drugs?  Oh, and I have to have a port put in!  Almost forgot about that.

WHAT IF I DON’T EVEN HAVE ANY MORE CANCER?!

Adjuvant therapy, leap-of-faith; peace of mind for my future, take out the what-if cells.  Breathe, Serena, breathe.

I’ve done some research on the side effects, and of course every one is different in how they react to the drugs, but here are a few: hair loss (that’s a big one that many of you know), mouth sores (sounds gross; alcohol-free mouthwash and lots of ice chips are supposed to help), sensitivity to the sun (I live in Hawaii!  Ugh.  Sean offered to move if need be… Seattle sure sounds nice and rainy, but I’d rather be able to look outside and at least have the sun as an additional goal and also not uproot us unless it’s in line with other decisions), decreased appetite/nausea/vomiting (red flag right there that chemo goes against the body’s survival instinct; do I have to starve out my cancer cells?  And don’t worry, team, I’m well aware that I’m already too skinny and I’m trying to bulk up for if and when I do this… I ate 4 blueberry muffins over 2 days to jump start it, that’s big for me!  If anyone needs a partner in calorie crime, call me, we’ll do fries), change in menstrual cycle (as in no more and not to return until after all this; hellooooo?!  babies, babies, BABIES!), tingling of fingers and toes (as if my armpit numbness isn’t enough!), muscle aches, bone pain, diarrhea (hey, look, more shit!)

And chemotherapy may not even work.  Some cancer cells wield what equates to an anti-chemo shield where the chemo has no impact on disrupting or causing suicide in the cancer cells.  Leap.  Of.  Faith.

I have some tests and meetings coming up and I spend a lot of time writing questions, researching and calling my Doctors.  More appointments abound.  You know, I thought my oncologist would be the center point in all of this chaos, the one who looks at my whole chart, my surgeries, my wishes and makes decisions based on that.  But he doesn’t really.  I do that.  I have to take what the surgeon says and what the oncologist says, then call my gynecologist and talk babies, then call the radiation oncologist and plan to zap my boob, then call the plastic surgeons and work reconstruction in.  There’s no one in Kaiser or my current medical world who is ground control on my files, wants and wishes.  Don’t worry, team, I’m seeking a second (and maybe third) opinion just in case I need more options.  I know how it can go in the medical field, but I’m not just a number or a statistic–or a statistic-to-be–I’m a human life and that’s all I have.

I have replaced my sense of purpose with not saving the planet and the oceans but with saving my life and as much as I know I have to do it, I can’t help but feel a little selfish, a little lost.  It’s all-consuming.  When my world has gone from something so big as teaching the world to save the world to trying to save or salvage my own life, it just renders me at a loss for words; it just isn’t me.  It’s not my ideals or how I was brought up, I’m supposed to do more with my life, be more.  But it has to be me for now.  Because if I ever want to reach my dream job of Conservation Biologist of Marine Species (ok, there’s wiggle room in the title since that job may not exist perfectly in the way or location I’d like it to) and if I ever want a family, I kind of have to be alive for it first.

P.S.  Heard on the radio today that Kenny Loggins is coming to Maui June 8.  Might have to go… “I’m all right, don’t nobody worry bout me…”