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…

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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…”

The Elephant and the Hermit Crab

“There are people I’d like to settle into a drink with.  Not for the sole reason of getting drunk, but for the ritual of lubricating someone’s personality.”  ~Dave Matthews

There is an elephant in the room!  I repeat, there is an elephant.  Hello?  Anyone?  Anyone?  We’ll come back to that!

Tomorrow is a pretty big day: I finally meet with my oncologist.  We set up “a plan” or something like that.  Because we’re not done.  It seems we’re never done.

On Monday, I got my drain out, which was an I-want-to-barf-full-sweat-hot-mess kind of situation this time around (sexy?).  It was jammed in there, said the physician’s assistant, which it just code for, sorry but this is going to fucking hurt.

It fucking hurt.

I am going to share with you what she said to me, because… I can; I love you but you need to be with me and hear this one, if I was subjected to it, so can you be: pulling the tube out will feel the way a slimy pasta noodle feels when you swallow it halfway and then pull it out.  Sean was there, he heard it too.  Maybe don’t tell patients that.  That’s just gross.  Pasta may be ruined for me (wait, was that the point all along?  Pasta is in the bad carb category that can be associated with cancers; ah but wait there again, just about everything is blamed for or associated with cancer; no win here, it’s all circles now).  I’m a “1-2-3 but pull on 1” kind of person (you know, keep counting so I don’t know what’s going on and my brain is still just following the numbers even as the pain sets in).

Well, anyway, it was at least out.  No results yet.  Would I like to set up genetic counseling?  Sure, why not.  I’m a scientist, I’m curious, I’d like to know more and help the scientific community.  And I’ve got some free time right now (I’m still on leave from work as we sort all of this out).  Let’s find out if I’m in the 10% of breast cancer patients that have the gene.  Because I’m so young, I’m eligible for counseling.  Cool?  I guess.  Yay, science, yay, research patient.

The elephant is this: this isn’t me but it’s totally me!  Do you get it?!  You don’t yet.  You shouldn’t yet.  It’s like a jedi mind trick or a fortune cookie from Yoda or a Confucious says sort of thing.  Let me explain.

I’ve gotten lots of feedback from so many people about my blog, it has been truly amazing.  I set this up so that you all have to make the choice to come here and learn more.  I will not put my shit on anyone.  But you can join me in the shit if you’d like (I do have a fondness for shit, don’t I?!).  I’m happy to have you!  And all are welcome.

One of the greatest things I’ve heard though is how stunned and/or surprised–maybe a better word?–many of you all are that I am 1) actually writing this and telling you everything and 2) that even though most of it is hard, it’s actually kind of funny and interesting and maybe even exciting to read.  Folks, I love you, I love…. that.

This is who I have always been but I never wanted you to know, and unless you were on the inner circle you couldn’t know (don’t worry, there’s only like five people on the inner circle and don’t go fretting about and racking your brain wondering if you’re one of the five because I totally made that number up; it’s arbitrary but it sounded good).  I am locked up tight, in my shell, quite like a… hermit crab!  (I do believe Catie, Carter and Jill titled me that while working at Ocean Institute).  I do not share my business or personal life with but a few.  Now, we’re talking in depth about my BOOBS!  Yeah, folks, we’re still talking about boobs!  Boobs boobs boobs.  All day.  Implants, sizes, cancerous ones, silicone or saline.  We’re talking about blood and IVs, armpits, drugs, all sorts of lovely shit that has become my current life focus.

THAT’S THE ELEPHANT!

I know how I may seem to most, a bit mysterious, hard to crack, a tough little shit, thoughtful, judging, etc and I am but, obviously, there’s another side, there’s more.  I know everyone sees me slightly differently and uniquely each to themselves but some of those previously mentioned traits may be or should be on your list.  We’re all like onions really, lots and lots of layers.  In that, I am am no different than anyone else.  I just happened to be the case of the extremes: I’ve chosen to do a personality 180 (ok ok, more like a 110) and word vomit you with my great breast tissue issues.  It’s liberating, that’s why I do it.  And it’s also something more.

When you (ok, yeah, me, when I…) are given the news of “you have cancer” (without spending time talking out the facts and details and treatment options and plan), and you just hear that, your mind instantly goes into end-of-the-world overload and covers your highest priority topics.  For me that was:

1) I don’t get to have a family.  (Or get married, travel the world and live my life out) and

2) Have I lived as the person I wanted to be up to this point?  Have I let people in?  Have I shared?  Have I allowed myself to be supported?

Mostly, have I let people know who I really am?

One thing I’ve always struggled with is feeling misunderstood.  There’s a shit-ton more going on in my head than I ever express and I have trouble verbalizing my thoughts properly.  Plus, who really wants to hear my shit?  We’ve all got our own shit too and quite frankly, I like to use our time together to figure you out and not the other way around (hey, I’m a psych minor, I’m always trying to figure people out)!  Here, I have the time to think it, write it, read it and edit it.  And even go back and fix it.  Like twelve times if necessary.  Or just leave it and say fuck it.  Maybe don’t let children read this.  I do curse a lot.

Before we all fall apart, I want you to know that I do not have any current plans to die anytime in the near future.  As you know, I’ve got shit to do!  I’ve since had many chats with Doctors–factoring in the importance of having a family–and surgeries–getting rid of the bad stuff as much as possible–and I know that I have time, time to do all or most of those things in number one and tell you about me for number two (no poop jokes, uh, sorry, that was uncharacteristic of me; no SHIT jokes).

Blogging in this format is ironic to me because it is such a thing of our generation, it’s what we d0, but it sure aint what I do.  We network, we chat, we are whiz kids on computers.  I can check on 50 friends on any given day and see wassup via F-book.  Information flows like crazy in our world.  We’re spoiled in this (I still admire the power and old school connections found in snail mail and sharing actual books, wondering how many people before me handled the letter or the book and where these items traveled… every piece could tell its own story and it allows humans to remember the importance of physical connection, of touch, even if they are not aware that it’s happening).  In this belief, blogging my life story to people I know and interact with daily isn’t something I would ever fathom to do under normal conditions; it’s too… vulnerable.

But, like I said, it’s liberating.  To cast the net, hold my breath and see what comes up has been energizing, lifting, wonderful.  You’re all out there.  So many of you said such kind words and helpful things, sent me books with answers and flowers that make me happy.  You’re all taking this shitty journey with me (and it’s actually not really that shitty anymore since we packed the party bus full of friends, music and booze!).  You have elevated my mood and kept my head above water.  When I’m gearing up for yet another Doctors visit and writing out all my 20 questions, you’re all in the back of my head (and actually quite literally on my phone, computer, street, town, state, doorstep, local bar, state of birth, boat, my mom’s phone, etc) as a captive audience waiting for me to just come back and tell you, that yes, yes, I’m still here and I’m still a feisty shit sticking around to not only kick some cancer ass but to also work on that long ass to-do list that includes family, marriage, career, LIFE!  Shit.  Sheeeeiiiit.  🙂

I started this in part too because: I was exhausted from saying the same story over and over; it’s an awkward topic that you lovely souls may have a hard time hearing about and conjuring words that would magically make the bad cancer cells go away; and I wanted it, I needed it, to be my story from my mouth.

And so it is.

After my drain removal and no pathology reports to be shared from my mastectomy, I was mentally starting to plan for tomorrow’s visit to the oncologist.  Thankfully, Dorien, the Physician’s Assistant, called Tuesday to say that the pathology reports were in and she wanted me to be even more prepared for Friday with questions based on these results.

Oh, the results?

I will level with you: they are OK but not great.  They took every bit of breast tissue out of there (I think, but I will ask tomorrow for sure) and they got almost all clear margins.  Almost.  Fucking almost.  Except on one area where the Ductal Carcinoma In Situ (DCIS) went–within the duct (pretty sure totally within, not on the outside of the duct, gotta ask)–all the way to the end or edge or margin (the cut/removed tissue from mastectomy surgery).  This means that there was not a section of cancer-free cells that they could definitely say, yes, we got it, because we have a clean margin free of evil and corruption.

In my scientific theory, if you took all my breast tissue then what’s left for DCIS to spread too?  Did the semi-evil cells (invasive cells are full evil, they did not find those on the margins thankfully) get to the end and look at each other, shrug and say “fuck, we’re outta pipeline, we’re done burrowing here lets go infect new tubes”, then, “OH SHIT, THE SURGICAL KNIFE, WE’RE DONE FOR!”  My cancer for sure has personality and spunk (it is my cancer after all).

I still don’t quite know how DCIS becomes invasive or how all that works and if DCIS can jump ship, reconfigure it’s DNA and say, “let’s go F up her pec muscle or do a quick change to pure evil and pick a new organ to harass and infest” (you know, you know, more questions for tomorrow!).  I don’t even know if the Doctors have all the answers.  But I think they have a plan (or many plans with lots of statistics and I, yet again, get to… HAVE to… choose something; I choose “don’t die,” to me, that’s simple; stop asking for more complicated decisions).

And from that section you can see how eloquently I take complicated biology information and make it user friendly, voices and personalities and all, as an interpreter and naturalist!

**Disclaimer: I am a marine biologist who deals in whales; not at all as a medical doctor and/or oncologist.

AKA: I am constantly trying to understand this myself and then try to regurgitate it for you.  Oh, the reading!

Well, folks, I imagine that quote at the beginning sounds real good right about now: time to settle into a drink and lubricate some personalities.  We’re deep complicated people (unless your shallow and simple) and that’s what makes being Homo sapiens so fun!  Thank you for supporting me in all of this.  Reading is supporting.  Sharing is supporting.  I’ve realized as a writer (there, I said it, it’s scary but I said it) it is very important to have not just an audience but an engaged one.  And I see it when you leave comments or Like it on Facebook or re-post the link or just visit the page (I have site stats!  3,800 clicks to this site; and Mom and Ash, I know you both clicked it like 400 of those times, so, thanks!).

To conclude, I want to specifically thank my Godparents Carol and Craig.  Ethan and I went to your Makawao church today, Craig, it’s beautiful and with amazing views (we even saw your name on the placard!).  And Carol, especially, shows to me how God may be hiding in the details too, in His ironies: Carol and Craig lived on Maui multiple times because they fell in love with each other there and with the beauty of the islands… I now live there (here, actually, for me) and found my love there (Scupper!  Just kidding, Sean Michael Sultan ;0)… a few years ago Carol went through–began–her battle with breast cancer (double mastectomy, bonus points for the double, auntie, it hurts enough with just one!) and is now a survivor (with an imaginable many check ups that followed and continue to follow)… and now I am battling my cancer and planning my survivorship.

I know I know, I already am a survivor, kinda!  No Beyonce songs, please.

“Run your fingers through my soul.  For once, feel exactly what I feel, believe what I believe, perceive as I perceive, look, experience, examine and for once, just once, understand.”

So, You Had a Mastectomy…

Also titled, “I will not pee the bed.”

Today is the first day post surgery that I have been able to focus and type, two things I had taken for granted previously.  The pain has been excruciating, not enough drugs and there isn’t a single position I can sit in or rest in that provides any comfort or relief.  I spent yesterday counting the hours until I could take another pain pill and trying to sit as still as possible; every breath hurts.  With the lumpectomy, my chest was comfortably numb after but with this surgery, I can feel everything.  Something wasn’t just removed during my mastectomy but for reconstruction, something was added.  And no, it didn’t end up being just a nice soft comfortable gel implant. We had to take the extra-pain-extra-surgeries route.  I shall explain soon enough.

We flew to Oahu on Tuesday morning, arriving at the hospital at 10:15 am for surgery at 12:30 pm.  The day before I was feeling sorry for myself, resigned to fate, relieved to be taking the next step.  Life is often about perspective.  My perspective at that point was, why do I have to deal with this, all of this, when so many of my peers get to worry about work, weddings and babies?  This is based on the general consensus and not everyone’s own personal goings-on, so again, as the blog rules go, do not be offended.  I know we all have our shit.  But I get to feel bad for myself here and there and Monday was a good day for that.  I want to be spending my stress and worry hours on my career and relationships and normal 20-something life, not on my health, not on dealing with cancer and healing.  I’m a classic multi-tasker and I’m bored with this one step at a time health crap.

The resigned and relieved feelings were welcome after that.  To think I could go in to surgery and potentially cut off the cancer and be done with it was lifting.  But I was also resigned to the fact that this is really my only option, if I wanted to have a strong quality of life.  If I had opted for another lumpectomy, there would be a good chance we wouldn’t get all the cancer cells and there would be a good chance it would come back.  And there wouldn’t be much boob left and it would look weird.  I live in Maui!  I’m a marine biologist!  I live in a swimsuit!  I cannot have that aesthetic discrepancy on my mind.  And thank God I have insurance and that it covers all of this.  (Yeah, if you don’t have insurance, you might want to rethink some things).

So I had finally accepted that I would be amputating my breast.  To me, boobs have always represented two very important things: femininity and motherhood.  Now, to me, they have come to represent pain, sadness, loss, suffering, anguish, fear.  But also, life.  If I accept that one has to go, I may get to keep the other (so far it’s still healthy) and, more importantly, my life.  I am not any less able to be feminine or a mother because of the loss of my breast.  But it’s always hard to sacrifice a bit of body–of who I am, of what the bit represents–even if the result is survival.  Man, I really hope the pathology reports come back saying that we got it all.  If they don’t then I would probably have to have radiation (that would mean the cancer went deep enough to reach my pectoral muscle tissue).  There’s still never going to be a guarantee that my left breast will stay healthy.  But I’m hopeful that it will, and with lots of follow-up imaging and testing, I want it to stay that way for a few babies in my future.  Natural options are important to me.

Pre-op was very different than Maui.  In Maui, I had a private room; in Oahu, I had a private curtained section and could hear what the three patients next to me were going in for and when they had last peed and whether or not they had a living will.  Hmm, I have given up my tight grip on privacy a lot these last few weeks but I think this is a good instance when privacy should be striven for and granted.  I just wanted the drugs, the sleep, the shit to get done!  I went through the changing, stowing belongings, answering lots of questions, a quick IV stab with lidocaine this time, hanging with parents and finally I was whisked away to surgery and I remember little.

Mom and dad and Sean told me it took about three hours (they had thought one hour would be all) and recovery took another several hours (oh, I do remember waking up to the pain and asking for lots more morphine).  Dr. Gambhir performed the mastectomy, removing all of my breast tissue and nipple on the right side (all drains lead to the ocean?  all mammary ducts lead to the nipple and since cancer hangs out in the ducts, the end of the trail had to go to).  Then Dr. Nishikawa came in to “begin” the reconstruction (remember, many surgeries in my future).  He placed something evil known as a “tissue expander” in the space.  Oh, yes, it’s the horrible gruesomeness I referred to in previous blogs.  It was placed under part of my pec muscle at the top and then cadaver tissue with the DNA removed was placed around the base.  This creates a pocket and extra padding for the future implant and allows for the space to be expanded over time to fit the implant; since the nipple and some skin was removed, I don’t have enough space to fit a implant right now.  Yeah, not quite the easy out, easy in I had hoped for.  I think this is where I get to say FML (fuck my life).  This is gross just thinking about it.  And it’s in my body.  Note to all: don’t get cancer, it sucks.

I woke up in recovery and they wanted to know my pain level from 1 to 10.  And what’s my comfort number?  I don’t need drugs if I’m at five.  But I think I was at 8 or 9 and so I got a lot of drugs.  And it went like that for many cycles of waking up and sleeping, which to me was about fifteen minutes in all but was actually many hours of time.  It hurt so bad I couldn’t breath right.  Inflating my lungs hurt.  Finally around 7 or 8 pm I was stable enough to go to my room.  My parents found me (communication was not great in the nurses letting my family know what was going on) and off we went.  I proceeded to get lots more drugs in my IV, antibiotics, saline, etc and some dinner (that part not in my IV).  Most importantly, I got to watch TV!  I haven’t had cable for years so I watched all the trash I could: E!, Kardashians, Price is Right.  The good stuff.

My personal goal was to not pee in my bed!  Even though I was allowed to.  Hell no I did not want a catheter and I couldn’t fathom trying to pee in a bed pan (seriously, how would that even work?!).  But I had to pee.  So the nurses helped me get up and walk to the toilet (3 feet away!) and I peed all by myself!  Ah, the joy of accomplishing a goal.  Not quite the same feeling as scuba diving the Great Barrier Reef in Australia but, it’s all that perspective.  And my nurse wrote my other goals: “pain control, no nausea or vomiting.”  Good!  Technically, I am allowed to puke on someone.  Or rather, they can’t get too mad at me if I puke on them.  But I’ve worked on boats for years and dealt with my fair share of seasickness (and general crabby people) so I did not want to continue that horrible scenario (I didn’t want to pay the vomit forward if you will) if I could help it.  I wanted someone to enjoy a vomit-free day, or at least a vomit-free patient.  I vowed not to vomit and I succeeded!  As I was leaving the next day, they termed me the independent patient because I insisted on peeing in a toilet.  It’s kind of like a gold medal at the Olympics.

My parents left around nine and not too long after, I got a roommate.  This lady was a character.  She was constipated (the reason she was in the hospital) and had cancer too.  She would say nice things to nurses and then call them all the time, saying “ooch ooch ooch” in loud rapid succession.  It was a constant procession to her side of the room, plus that no privacy thing.  I found myself trying to figure out her life.  What was her ethnicity?  She had an interesting accent.  How old was she?  She looks old but I know she has a ten year old daughter… Hmmm.  What does she have?  Who is she?

The night passed uneventfully for me, exciting for the bed next door.  Staying overnight in a hospital is like having a sleepover.  No one really goes to bed.  We all sleep for a few hours at a time.  But there are always nurses coming and going.  Vitals are taken every few hours and drugs are administered every few hours in between.  The doors stay open so I could hear other patients.  At one point, the person in the room next door was yelling “help” and since no one came, I pressed my nurse button and sent the message on.  New perspective: OK, life isn’t that bad, I can still press my call button but look at all these other people in recovery, they probably have it worse.  Leave it to being in a hospital to change my perspective, at least for the time being.  I couldn’t read because it hurt too much to move and my brain was too spacey.  More TV and peeing to pass the time.

I could have stayed another night in the hospital but I just wanted to be home, to see Sean and the dog, to be in my own comfort zone.  Traveling home was painful as was the first night back, but it’s getting better.  I got the premier treatment via wheelchairs but any bumping and/or movement hurts.  I like to sleep on my side but I cannot.  I’m learning to use ab muscles and they hate me.  I move like an old lady.  Yesterday I had to switch books from something semi-educational to a mindless novel because I cannot concentrate or process a lot of info (brainless is making me feel smart again!).  I glare at the phone when it requests my attention (sorry, friends, I’m almost there).  I have a very fashionable right side pony tail because I cannot lift my right arm all the way.  I am learning to be ambidextrous because it hurts to use my right arm too much; I’m also learning to balance my food on the fork as I slowly bring it to my mouth.  I am forever thankful to my caregivers, mom, dad, Sean, puppy.  I wanted to write but couldn’t until today.  And we’re sticking with the facts for now, maybe I can put one song in here for some fun.  I just wanted to get you all up to speed.  And I need some more drugs (trying just Advil!).

And I’m still trying to suss out all the good in this and focus on the humor in this, where applicable and when possible.  Believe it or not, one boob the less, I still cannot believe this is happening.  I mean, it’s happening, yeah, I know.  But, really?

The Devil’s in the Details

“Courage doesn’t always roar.  Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.'”

~Mary Anne Radmacher

One of those details being: I still have cancer.  That’s right, I tried to wish it away but it just wont go!  Seems as though there are still some cancer cells attempting to corrupt more pre-cancerous cells lingering in my right breastal region (perhaps you prefer boobal region?  I believe in the American right to make up words.  It is ginormously important!  It may even be in the first amendmant…).  That’s the scary truth of it: I’ve been through so much shit and I still have cancer.  Can’t you tell you’re not wanted, evil C cells?!  Theoretically, a mastectomy will get it all and we’ll be in the clear.  Ideally, hopefully, fingers-crossed-ly.

Another detail, why did Kenny Loggins “I’m Alright” from Caddyshack get thrown in here in one of the first blogs?  Danielle told me Beyonce’s “Survivor” went through her head when she heard/read the news, and I can’t help but admit, it traveled into mine too!  But then I had to quickly mute it because we’re just not there yet.  Driving around town in a state of shock, disbelief, anger and doom, the universal powers that be gave me a little Loggins time and sent “I’m Alright” to the radio.  Listening to it was a nice step back in time–ah, memories, family, friends, life–and a reminder that I’m not the kind of person that stays curled up in a ball of doom and gloom (sure, I curl into the ball sometimes, but only temporarily).  I’d rather go at this aggressively, seize cancer by the throat and chuck it out into the streets, ASAP!  I got shit to do and cancer was not on my list of life-long goals.  But here it is, already over-staying its un-welcome.

“I love to see a young girl go out and grab the world by the lapels.  Life’s a bitch.  You’ve got to go out and kick ass.”  ~Maya Angelou (If she can swear, why can’t we?!)

And, Nik, thanks for the home-made CD!  Listening to it now, and mellowing.  Kari, yours in up next!

“One good thing about music, when it hits, you feel no pain.”  ~Marley

One more, little tiny teensy weensy detail: the armpit numbness I’ve mentioned may last anywhere from nine months (Dr. Gambhir’s estimate) to one year (my plastic surgeon, Dr. Nishikawa).  Or rather, that’s the amount of time it may take for my arm to be back to normal.  This is because of the removal of and damage to my lymph nodes.  F.  Bomb.  Ugh.  Do you know what it feels like to put on deodorant on when there’s no feeling there?!  I can’t tell if the deodorant went on!  (Which, by the way, as cousin Nicole mentioned, Aluminum-free deodorants don’t work so great; still looking for a good one.  Ash, which one did you try and like?  I didn’t like the Crystal, never thought it worked, I need something that smells good.  Should I just rub some aluminum chunks under there?  Is that the secret ingredient?  I know it’s potentially carcinogenic but, hey, I already got cancer!  I’d rather not be the smelly kid at this point.)  To explain what my upper arm and arm pit area feel like, it’s just this: chaffing.  Constant relief-less chaffing.  I see men cringing.  Ladies, it feels like a bra edge folded under a tight tank top and rubbing only I can’t just adjust it.  It’s tight and stiff and sore to move and lift my arm.  Nine months of this?!  Fuuuuuuuhhhh.

Yesterday was the Oahu day trip (I live on the neighboring island of Maui in Hawaii and not all of Kaiser’s doctors and facilities are here) to the plastic surgeon to discuss reconstructive surgery.  Folks, I’m here to be honest.  I’m not going to sugarcoat this.  You may need to remove small children from the room.  The details of a mastectomy and reconstruction, are in one word, BARBARIC (boobaric?!  Hahaha.  I may be loosing my mind, finally).  I was horrified as we talked through the process.  Cancer is obviously here in my life to show me that there-are-no-shortcuts-we-can’t-get-through-this-fast-I-need-to-slow-down-stop-and-smell-the-roses-stop-worrying-about-work-and-anything-else-but-getting-healthy-shut-the-hell-up-and-deal-with-it.  Something like that.  At least that’s what I got out of it.  I will spare you the details for this blog because there was something deeper at the heart of the Oahu trip.

I finally had my meltdown; I went and sat at rock bottom and had a brief pity party.  Obviously, the last blog represented a terrible day and the descent into no-man’s land.  I thought it was the bottom and that I climbed back up.  But I was wrong.  I got through the Oahu trip and then got home, went to a lovely movie with my man and then started telling Sean about the horrors of the reconstructive surgery, the time it will take to go through the three surgeries and six plus appointments that make up the reconstructive process.  By re-telling what I had heard earlier that day, the reality came in fully and sat like an elephant on my chest and a storm cloud over my head.  Cue giant fat rolling tears on the car ride home, pause to get ready for bed, and cue more tears in bed.  Sean chose the tough love method in the car as I whined and pitied myself and this sucky path of life I got put on and then, at home, I “yelled” (spoke strongly sounds more accurate, “voiced my opinion”) at him that he needed to baby me (as a stubborn man to my stubborn lady-ness, he finally relented and  chose to alternate between supportive things and being quiet while I got it out; we are quite a match of stubborn-ity!).  But the whole magic of it all, is that once I gave in a cried it out, I was over it.  I was lighter.  It took maybe ten minutes and then I could let it all go.  All that shit just floated off in the breeze and I slept.  Don’t think for a minute I’m telling you that I’m emotionally balanced but that chunk, that situation, has been processed away and put to rest.  I’m better today than I was yesterday.  And guess what mastectomy with reconstruction?  I’m still coming at ya.  You.  Me.  Tuesday.  See you (in part) in the OR.  (Stronger drugs, please).

“Anyone can give up, it’s the easiest thing in the world to do.  But to hold it together when everyone else would understand if you fell apart, that’s true strength.”  ~Unknown.

How are you all doing?  I’ve gotten some feedback that you experienced many emotions from reading this, but what exactly?  I know I promised you a poll in the Results are In blog but I couldn’t have your opinions weighing on my decision; it just had to be my decision or as an independent young lady, I would second guess myself.  So let’s try the polling feature below.  The Unknown/Other category are for those of you that say, “Serena, I don’t know how I feel.  My girlfriend made me read this.”  Or perhaps, “Serena, I don’t know what emotions are.”  Or even, “Serena, I’m cry/laughing so hard I don’t know what I’m clicking.”  Or the usual, “Serena, I’m not good at multiple choice, is this a test?  Is there a right answer?  A wrong answer?  WHY IS THIS SO STRESSFUL?!”  Just, shhhhh, click it, breath, take a walk and come back when you’re ready.  Stop channeling college nightmares.

Another detail: To Bob and Maryellen, I have changed the tag line to reflect your witty input!  We are no longer here for therapy but “Tumor Humor and Cathartic Carcinoma Quips.”  Much more attractive and far less scary.  Therapy is scary sometimes.  I did a little dictionary-dot-com-ing to make sure I was using “cathartic” properly (Darlene Wilt, I almost always check my work!) and I found some interesting definitions.

The first was “a purging medication; stimulates evacuation of the bowels.”  Well, according to that definition, we are going to shit all over this blog!  Go for it, purge away: shit on it, I dare you!  Life is shitty.  We often get stuck in shitty situations.  Shit will hit the fan at some point.  This is shit and this is shine-ola (The Jerk, a classic family and Lake Winnipesaukee Labor Day Party movie).  We are never too hold to deal with shit and have fun with shit; some of you are even cleaning up shitty diapers (even from adorable Sellier girls, Cami and Cossette!).  Ah, shit.

The second definition was far more accurate and exactly what I was looking for: “emotionally purging.”  Yup, in the case of shit hitting the fan, we’re usually experiencing a lot of emotions (ideally, the fan will whisk those emotions away and just a hint of a poo smell will remain as a humbling reminder of what we went through, the shit).  I am using this blog to emotionally purge.  I’m kind of shitting on you.  In some species, that is special.  Maybe not in Homo sapiens.  But a bird shitting on you is lucky, right?  Or did a parent somewhere make that one up so console a shat-upon child somewhere?  Hmm, I digress.  Where were we?  Oh, yes, I shit on you with emotions.  But I leave the door open for you to shit back!  That’s what the comments section is all about!  Shit away (the overuse of this word is leading to it’s loss of intensity; granted, it’s a bit more acceptable in society and culture than the F word; kids reading this, I’m just referencing Fudge or Fruit or something else Fantastic).  We’re emotionally purging our way through a very difficult matter with equal bits of reality and crap and humor and fun; like a fine life recipe, huh, mum?

Can you find the shit in this picture?  Guess what?  It’s from the brown BOOBie bird!  Life is ironic!

And this leads me to one of our last devilish details: the amazingness of all of your [unshitty] support!  And my extreme inability to call you back.  I’m still Serena, I still have a hard time with the phone.  I have received so much love and support from you and I haven’t been able to keep up with it.  But the cancer books say I don’t have to and the cancer books say (because you probably haven’t had as much time as our household to read them so I did for you) that you should not be offended that I didn’t call or write or email or text you back!  Yay!  Cancer, the scapegoat, strikes again!  You can blame it too!  I got flowers from mom and dad, Erik and Lisa, Michael and Craig, the Pacific Whale Foundation Lahaina-side family.  Care packages and thinking of you gifts from godparents Carol and Craig, Nik, Kari, Mike and Laura and Reno dog (and Scupper even got a doggy care package from them!), Aleta and Gary, Steph and Linds, Jac and Andrew, Sierra and Drew, Uncle Dennis and Mary Lou, the McClellands.  Cards from all over the place from all areas of my life, phone calls and texts all up in my phone, emails filled my in box.  It has all been overwhelmingly amazing and continues to be so!  I write this as a huge thank you.  I cannot always get back to you.  Sometimes I’m busy, sometimes I’m just too tired with all this stuff.  And I do feel guilty about even though I know you understand and the books say I don’t have to.  But your love and support and respect and care do not go unnoticed.  You all want to do something and you have; just reading this and sharing this is enough but you’ve gone above and beyond.  Mahalo cannot be expressed enough and I know I’ve said it a lot in here; I’m shooting for overkill anyway!  I love you kids!

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”  ~Lao Tzu

Our final detail: did you feel yourself up yet?!  Woah, WOAH!  Let’s not get carried away!  Get your mind out of and away from the gutter!  I just want to make sure you did your boob check.  It can take 6-10 years for cancer to develop into a notable lump.  Ain’t that a mind trip?  All this reading and learning about cancer and I’ve maybe possible potentially had it for a long time.  But, dear, cancer, you are still not an old friend!  You are still not welcomed with open arms.  I still plan to find you.  And kill you!  Don’t put up a fight anymore.  Let’s just make this quick–and since we can’t say painless, and hardly even quick for that matter and my mind set; just go peacefully.  And never ever come back.

An F-ing Bad Day

I’ve realized that in many of my blogs, I have spoken highly—lovingly, even—of my prescribed drugs.  And I want to reassure you that I am not going to become addicted to them.  In all honesty, they’re not that cool cause they’re not that strong; they’re like super advils, they are the weakest prescription painkillers that could be given.  But because I have a limited drug history and usage, they are amazing to me… even if they probably work mainly as a placebo and my weakened mental state allows me to pretend they are heavenly and powerful.  We think I took percosets when I got my wisdom teeth out in college; those knocked me out, I don’t even remember what they felt like.  And because my mother is a hippie pill-free cautious kind of nurse, she always limited my use of those.  She lets me free with my current drugs, most likely because what can a super mega advil really do to me?

I’m going to Quentin Terantino this one and tell you that the end result of my very shitty bad day was that I had to HAD TO take my drugs to go to sleep.  As Sean said that night as I was trying to cut down my usage, “Just take your drugs, that’s what they’re for.”  Ahhh, ok, if I have to (damn saviors)…

Pretty much immediately after I finished the Time Warp blog, all hell broke loose.  I had planned a nice day centered around a whale watch but karma decided that would not happen.  I received a phone call as I was frantically trying to get dressed (it takes me a while still since I can’t lift my right arm and put things over my head) that went something like, “This is the MRI department, are you coming for your appointment?”

WHAT F-ING APPOINTMENT?!  All I do is make appointments and go to them and I had no idea about this appointment because NO ONE TOLD ME about it.  And the MRI appointment is NOW on the other side of the island?!?!?!  NO, I’M NOT COMING!  Can I come later??  1:45?  But my whale watch goes til 1:30 and it takes 45 minutes to get there.  FUUUUUUUUUUUUUUU dge.  Nope, that wont do, FUCK.  There I said it.  (Dane Cook fans, he has a skit in his stand up where he says it a lot and it starts to lose it’s meaning.  If anyone finds this word offensive, just say it a lot in different ways and voices and tones and accentuate different parts and it will lose its power soon too; you will become less offended as it becomes just some consonants and vowels thrown together to make sound effects).

Let’s take a moment to step outside this major breakdown and explore what Serena looks like in crisis.  My parents got the screaming swearing pissed off Serena (really, even watered down from what I felt inside because I knew intellectually that I was over-reacting and that the emotional side was winning out because it was cracking).  What my friends and Sean heard and got was the grumpy re-telling of the day (and, yes, there’s more coming) and the “why are people so stupid and why couldn’t someone tell me and this could have all been avoided if someone had just told me” rationalization.  And what most people see is me still forcing something reminiscent of a smile and trying to stifle the smarmy looks I begin towards people, whether or not they actually say something stupid, or I just find a way to make everything they say stupid (and for the record, this is strangers and not friends; I keep a tiny bit of compassion next to my rationale that cannot be blocked out by the emotional overload to keep friends and family out of the spit fiery rage… phew, you’re safe!).

Alright, so I concede to the poor receptionist (who was actually filling in for someone else) as they kindly made room for me at 1:45, reschedule the whale watch to Saturday and go lay down.  Then I realize that I don’t know how to prepare for an MRI.  Am I supposed to arrive early?  Eat something?  Not eat something?  Bring anything?  I like to be prepared for everything; I like to know what’s going to happen and what to expect.  I call back and they say no, just come as is at 1:45.  Don’t worry friends, my little intuition buzzer said: ehhhhhh, no; plan to be surprised.  (And yes, at some point, I did swear on the phone at the receptionist, well, not at her, but about the general situation and she was sweet enough to give me a freebie on that; sometimes I’m just not above cursing in public and to strangers… blame the cancer.  Oooo, that’s a stretch).

We drive our 45 minutes to Kaiser… go to the wrong building (which I knew, in the back of my head, would happen and I accepted that fate), go to the right building, check in smoothly, pee and go on back to change and get ready for the procedure.

Begin the next shit show: “We’re just going to give you an IV.”  WE’RE NOT JUST DOING ANYTHING!  I have obvious veins but ones that are small and resistant to being stabbed by needles.  I HATE IVs!  They hate me!  Oh, SHIT.  Here we go.  Stab the right arm.  Ouch.  No go.  Stab the left.  OUCH!  No.  Stab another vein, OUCH OUCH F-ING OUCH!  Stop stop stop.  Ok, we’re calling another nurse.  Keep staring at the ceiling, Serena.  Warm my veins, alcohol rub, warm, alcohol, stab, pain, but success.  Finally.  More medical tape (I’m still covered in medical tape goo from surgery and whatever else they stuck to me during surgery).  And we’re going to the MRI room.

I am not claustrophobic.  I have few fears because I don’t have much patience or interest in the words “No” and “I can’t.”  But I now HATE the MRI machine.  Mainly due to the discomfort and the need to be still for 45 minutes in a machine that sounds like a firing range and sperm whales vocalizing.

When you need your boobs scanned, you have to lay on your belly at an angle with said boobs dangling down into open space.  With arms stretched overhead.  Those of you that got to lay on your back in the MRI, I envy you.  Here’s where this is all wrong for me:  I have NEVER been a belly sleeper.  It just plain hurts my tummy and back and every muscle attached to those spaces, and it compresses my lungs making it hard for me to breath.  Then I had to have my arms overhead.  I cannot lift my right arm so I won that argument and got to keep it by my side (I blamed stitches and complete lack of feeling due to the healing of severed nerve tissue; whatever works, right?  It’s nice when the truth works, too).  But ol’ lefty had the IV.  Poor left arm.  It HAD to be up.  Within 5 minutes, it was tingling and then numb.  Was my arm still there?  I couldn’t lift my arm to check.  I don’t know if it’s wise to put an IV—with chemicals needed for imaging—into an arm that has lost circulation.  I mean, isn’t that the point?  Don’t I need blood flow to get those chemicals from my arm to my boobs?  I know I’m just a scientist and not a Doctor but…

Five minutes into this machine—on my belly, left arm up, right arm by my side, nose touching the cloth, toes hitting the end due to too much height—and misery.  I am so uncomfortable that the only thing I have to look forward to is… claustrophobia!  The mind is an evil thing when all you want is to not be where you’re stuck, and all you have is time to think about how much you don’t want to be somewhere.  I did not panic but I did count down the minutes of misery.  Not in exact terms but every time the tech came on the headphones and told me one more was done, I knew I was that much closer to the end.  Yeah, I got to pick out a CD and wear headphones and was able to communicate to her but it was all a ruse.  I couldn’t hear the music over the gun fire/whale sounds and when I told her my arm was numb she just said sorry, we need the IV to reach, it had to stay where it was.  I twitched and moved between scans but I couldn’t move much and I knew that if I moved a lot, she would have to start over.  NO F-ING WAY ARE WE STARTING OVER!  The longest scan was nine minutes!  Nine minutes not moving while sounding whales shot guns at each other!  WHO DESIGNED THIS HELL HOLE?!

Finally, I mean FINALLY! I finish and I get to come out.  I sit up like I’m waking up from slumbering under a highway, every bone cracking, muscles not supporting me because none of them have blood flow.  I’m kind of sitting on my knees, blinking, limp, looking at my IV and the giant needles still attached, wondering how I survived.  The scans went on time according to plan—no do-overs thankfully.  I go in to have the IV removed and God love her, she didn’t really think about this, the tech says, “Next time you have an MRI, come early and we’ll send you to oncology to get your IV.”  Next time?  NEXT TIME?  I’m never coming again and I didn’t know what to expect and that I would need an IV and that you would stab me three times before we got a functioning vein.  Fucking next time.  Yeah, I glared at her (I kept my manners, mom and dad, don’t worry).  And I said very simply amongst all the rage and unpleasant thoughts in my head, “Yeah, well I didn’t even know I had an appointment.”  To which she said she had heard the conversation on the phone when the receptionist called me the first time.  I don’t even have words for the ridiculousness of this last conversation.  But I do know what she was getting at.  And I sincerely hope that if there is a next time, it will go much MUCH better than the first time.  There’s no other way to go!

The final kick in the pants was when I went to pay.  My bill was $200.  What the hell?  Every Kaiser bill I’ve paid up til now has been $5 or $19 or $20 at most.  But $200?  Damn icing on the cake.  “Well, how much is the total MRI cost?”  What’s Kaiser paying here.  “About $3000.”  I am in the wrong business!  I could be torturing people with a costly MRI machine but instead I teach people to love whales!  Where did I go wrong?!  (Infinite Yankee sarcasm here).

Into the car and off to run final errands.  The mall.  I did what every good hard-working woman wants to do to feel better, when life has shit on you and there’s nothing left to do: retail therapy.  I went into American Eagle and I bought some clothes.  And I didn’t buy one or two like usual; I bought six or seven things.  I didn’t try on 4 pairs of pants and shorts and buy one; I bought three of the four.  Cause I’m tired of making decisions!  No more decisions.  PLEASE.  Luckily, that $200 Kaiser bill was still on my mind and one store was enough; it did the trick (as did the BLT and fries and coke we had at Rubys).

“”There was a time when I had 2000 friends,’ he said, ‘and thereafter followed 2000 more.  4000 burdens weighed me well, but there were 8000 hands there when I fell.'”  ~Erin McKeown

A big thanks to my parents who drove the car and sat quietly while I vented and was tortured.  And to Sean and my friends who listened and consoled, and fed me good food that night with Aleta, Gary, Lindsay & momma, Dave, Kirsten, Steph, Jess and a couple of adorable little ladies playing with faux cupcakes and oven.  And that glass of wine.  And that pill I took after lying in bed trying to sleep for ten minutes.  Thank you, drugs, for being my final knockout punch to never never land to make this bad day (turned good in the end) be over.  Friday is behind me now and we’re moving forward.  I needed that bad day to be my bottom so I can move forward and up from there.  Fucking MRI machine…

“In three words I can sum up everything I’ve learned about life: It goes on.”  ~Robert Frost