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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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.

Post-surgery Update

“Those who preserve their integrity remain unshaken by the storms of daily life.  They do not stir like leaves on a tree or follow the herd where it runs.  In their mind remains the ideal attitude and conduct of living.  This is not something given to them by others… it is a strength that exists deep within in them.”  ~Anonymous Native American

*We do all have this strength and can share it.  I’ve felt it from you and it has made all the difference as I and we travel though this.

Greetings loved ones.

After my Thursday interview with the nurse on my medical history while at my unique “office” of the boat Ocean Discovery crossing from Manele, Lanai back to Maui (not easy to have a serious chat on the phone with diesel engines running in my ear!), I proceeded with the semi-normal life of grocery shopping in anticipation of parental arrival, walking the puppy, cake for dinner (why not) and picking up the parents from the airport.  No food or drink after midnight so I ate and drank until midnight.

Let’s go through this together…

Friday morning, up and showered, no breakfast allowed, load up the caravans with Ash, Mom, Dad, Sean, a cancer patient.

8:00AM – Valet parking at Maui Memorial, check in at registration, ID me, more paperwork and signatures, up to my private room.  Take away all my stuff and wash down with warm scented cleansing cloths that smell, taste (yeah, somehow I licked it, I’m a very sensory and sensitive person) and feel sticky, into the gown, into the bed, wait.

8:30AM – More questions, yes, I’m still Serena Neff born 6/30/83.  Time for my first jabbing needle: an IV.  Now, I am skinny and I have small veins.  I gave blood last week for my pre-op shenanigans and they jabbed me twice before getting a smaller needle.  This time, the nurse couldn’t find an obvious vein in my hand, so she went to the elbow and poked unsuccessfully (but made a good bleeding wound).  She called in the RN who seems to be the take-no-prisoners get-er-done kind; she tied off my arm, lidocained my hand, found a vein and stuck the IV needle right in there.  I hate the bee sting feeling of needles.  Let the fluids flow!

9:00AM – My posse huddled into the room.  They ate delicious breakfast foods in front of me (those jerks), we watched some depressing murderous missing people mass murdering news (did I mention they talked about murder in most of the stories?  Ah, CNN, so uplifting) and then switched over to Family Feud.  What job should a dude have to ensure a saucy encounter with a housewife?  I guessed plumber (#2 answer); the best answer came from Sean: Pool cleaner (#7, what?!); Ash guessed Gardener (#4 I think) but the #1 answer was mail man.  What?  Does no one watch Glee?!  Pool cleaner.  Should be top choice.

10:00AM – Wheeled to x-ray.  Dude, I gotta pee.  Moved into a new bed, warm blankets, time for my radioactive dye injection.  Boob warmed, and numbed, and warmed and shot with yet another needle, and warmed again with the heating pad.  Then…….. I get to pee!  Ahhh.  The small things that let me feel human.

11:00AM – Back in bed and to my room?  No!  Straight to surgery.  I have a brief moment of dread and panic and sadness.  My boob will never be the same, my body will never be the same.  This shit is scary.  What if they find something else?  What if something goes wrong?  WHERE’S MY ANESTHESIOLOGIST?!  Shh, brain, shh.  Meet a bunch of nurses and, at last, my anesthesiologist, my saint.  See I’ve got this pounding headache from pressure or stress or lights, that feels better when my eyes close but would feel a whole lot better if I could just stop being conscious for every step of this whole process and just go to sleep and wake up with things done.  Dr. Baker seems to agree and gives me my first shot: the sweet icy nectar of Valium.  Ah, felt like ice cubes to the vein. and after being wheeled into the OR, scooting to the table, getting vitals hooked up and leg massagers wrapped on, I was out in 5 minutes.

Fast forward to about 1:30PM, I think…

I don’t even know where I woke up or what I said first but I was wrapped in bandages and on lots of drugs.  And pretty happy and comfortable.  My doctor said something about everything going well.  I somehow ended up back in my room.  My personal support team came in.  I got juice and crackers (food, finally!) and then I had to pass my test: drink something, stand up, walk to the potty, and pee.  God, can’t the rest of life’s tests be so easy!  For the record, my pee was green from the blue dye.  Cool.  Very St. Pats Day.  And I did pass all my tests even though I walked like a drunkard.  I would fit in at Lahaina harbor real well.

So, what happened while I was out in la-la land?  My lumpectomy procedure removed more tissue surrounding my original tumor in an attempt to get all the cancer cells that were associated with the lump; they took a gold ball size amount.  A GOLF BALL?  Well, shit, I don’t have that much to spare!  Sean said maybe they could put a squeaker from the dog’s toy in there to both fill some space and entertain Scupper man.  Kinda funny, huh?  Kinda gross too!  We’ll see how it all looks after and go from there.  I still have my vanity to protect.  The radioactive blue dye indicated that my sentinel lymph node had potential for present invasive cancer cells.  Yikes.  That lymph node was removed and is being biopsied.  Results to come.  I currently wear a drainage ball.  It’s gross.  There’s no way to sugarcoat or beautify that one.  Use your imagination and then block it out.  Ear muff it; brain muff it.

For now, we’re in sigh-surgery-is-done-now-wait-and-see mode.  We’ll be hearing from Dr. Gambhir in the next 3-6 days and I have a follow up appointment next Wednesday.  I feel pretty good, just sore and tight.  My mom threw away my deodorants that have Aluminum in them and I can’t shower for 48 hours so who wants a hug?!  Don’t worry, I have a sponge bath and new good smelling hippie deodorant in my future.  Big plans for our day, eh?

I hope to make it to Mikey’s benefit tonight so watch where you’re walkin!  Don’t bump me too hard.  We’ll see how I’m feeling later.  No drinking either, just drugs!

Start Here

each day is ours

“When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.” ~Harriet Beecher Stowe

Aloha friends, family, associates and random souls!

If you’ve found your way here, you have probably heard that I have been diagnosed with breast cancer.  I’m 28, there’s no history in my family (other than my dad’s mom at 62 ish), and there were few symptoms, just a small lump.

This blog is my form of therapy to keep both myself sane and you all informed.  Anyone is welcome, anyone can write anything any time, which means that I myself may not be censored!  And yes, mom, that means that sometimes I might curse like a sailor (because I am a sailor and for the record mom did try to keep my mouth clean growing up–once, even with soap!–but you can’t stifle who you are, at least not all the time).  You’ve all been warned: there’s no holding back here!  And remember, too, folks, we’re not all doom and gloom here.  I’m all sorts of Yankee sarcasm (not those Yankees, they suck; go Red Sox!) and witty commentary so don’t pull out too many tissues.

At times, it’s probably going to suck and be hard for me to write and you to read, other times maybe even gruesome, optimistic, happy, sad, frustrated, pissed as all get out, confused and, largely, hopeful.  I’ve learned in the last few days that those emotions are not just mine but all of yours too.  Go for it.  Emote.  Join in.  I have an amazing network of friends and family and by sharing this with you, I hope to create an open dialogue, stronger relationships and awareness for this issue.  Maybe, just maybe, it will even save a life.

Here are the facts, from the beginning:

~February 21: Lump discovered by me at home at random; surprise, fear, confusion, urgency ensue; call Doctor pronto

~February 22: Doctor checks; probably a cyst, make mammogram and ultrasound appointments and then make an appointment for surgery because I probably want that thing out; slight relief, still restless

~March 6: Ultrasound appointment (oh, both mammogram machines are broken?  Thanks, Kaiser, don’t you think that’s a problem?  Note to self: follow up with Kaiser on their insistence of protocol and saving money by not offering to outsource me to a working mammogram machine across the street at the hospital; also note, ultrasounds are better at imaging for my age group and mammograms are not part of regular screening for women until about age 40).  Ultrasound is inconclusive and cannot tell if it’s fluid-filled (a good thing) or not (bad thing), proceed with surgery and follow up there; still not at ease but hopeful

~March 14: Surgery to remove the lump (or, would I like to make another appointment to biopsy without removal?  Hell no, get that abnormality outta me!); Surgeon, Dr. Gambhir, my favorite person at Kaiser, does local anesthetic and talks to me the whole time with the nurse holding my hand, removes (extra anesthetic needed; I felt it, it sucked) the lump, mentions it looks fibrous, bottles it, bags it and ships it. Oh yeah, I looked at it.  I’m a scientist, I have an overwhelming sense of curiosity, I had to see the invader.  I need to understand this intellectually too.  Lab results in 3-5 days, is it OK to talk over the phone?  YES.

~March 16: Results are in.  That was fast.  I did not expect it so fast.  Everything at Kaiser takes so long.  But this was Dr. Gambhir.  She and I think alike in the I-need-to-know-yesterday sense and the let’s-get-a-move-on-now way as well.  No surprise to you at this point: the biopsy came back cancerous.  Of course these results are a surprise to me and the Doctor and everyone else I tell.  As I mentioned, there is no breast cancer on my maternal side; 2/3 of women diagnosed with breast cancer are 55 or older.  Well, I’m the 1/3; and I should probably play the lotto now.  Doom sets in, lots of thoughts of mortality, anger, frustration, shock, sadness, pissedoffedness?  Yes, dictionary.com, that one’s for you: I’d like to enter this new word for consideration.

What is it: a duct that would deliver milk for nursing has cancer cells within, which created the lump.  It’s called ductal carcinoma in situ (DCIS for you Google-rs) BUT it is WITH invasive cells.  What the invasive cells do is basically jump off the mother ship–the lump–and try to ride my lymph system to bother other organs and body parts.  The current question we now face is: did any cells jump off the mother ship and tour my body, finding a new place to settle and replicate and make friends aka lumps or tumors if you’re feeling strong?

And where do we go from here?

Sean–my boyfriend/partner/roommate and primary support system–and I met with the Dr yesterday (March 19th) to understand the problem and plot the course of attack on it.  I have surgery scheduled for Friday for a lumpectomy to remove breast tissue around the affected area until there is a clean margin (no cancer cells detected on the outer edge).  While sleeping under the aid of drugs, they will also inject me with a dye/material to find invasive cells and see if any made it to my lymph system, then biopsy an armpit lymph node (this is part of staging).

Currently, I am tired of typing and recognize that this is long and just the start of more to come.  It’s enough for you to be informed.  As for me, the last 48 hours have been a lot of phone calls and explanation, tears and emotions, research and understanding, planning and paperwork.  Mom and dad come Thursday.  I work my last day as a naturalist–a “whale girl”–at Pacific Whale Foundation on Thursday and then settle in for a 2 month hiatus from work responsibility as recovery from surgery is 2 weeks and radiation will follow for 4-6 weeks 5 days a week.

Basically, I’m doing OK.  Almost good.  It helps to have a plan and to know that the plan will start soon, that Friday will tell me “how bad it is” to some degree via staging.  I’ve got all of you and my cheer team here in Maui, I’ve got a Doctor who is intelligent, capable and kind, I’ve got a dog to pet and people to bribe me with delicious roast chicken, cooked carrots with mandarin oranges and rice pilaf; dessert of my choosing.

Those who I have opened up to a little and a lot–which is not my character to be open, until now–have been very supportive and encouraging.  Everyone wants to know if I need anything and I realize that we all feel helpless when this kind of shitty (mom, a sailor stole my computer and typed that, not me) news is delivered.  We all want to be in control of our lives in every facet; it’s part of what makes us human.  The reality is that I’ve probably had cancer for a little while–days, weeks, months, who knows–it’s just that I finally discovered it.  When I think about it like that, I feel like a detective; I feel almost in control.  And now we’re going to fix it.  We’re gonna kill it off and throw it out!

But just in case you can’t sit still, here’s your homework:

~CHECK YOUR BOOBS!  Boys, too, you can get cancer of that region.  Or tell your wife or girlfriend or best friend to do it.  This is not just a lady problem; it’s everyone’s problem!

~Do what you need to do to feel better: call me, email me, ask questions, facebook me, research it, tell someone, turn off the computer, spread the word, check in in a week, listen to your favorite song, pray, talk to your family, call my mom (she likes sharing, let me know if you need her number, she’s good at momming so even if you just need to be mommed, she can do it; she might tell you to get a tetanus shot or a flu shot too).  But remember that I’m not a leper!  I still do healthy people things.  I feel great.  I wont on Friday but that’s the nature of surgery.  I am not fragile and I do still need to be treated like a feisty, sassy, capable, living human!  Don’t feel the need to walk on eggshells for me because I will call you out on it!  But don’t hug me without checking first, that one you have to be careful of.

~And most importantly, because I’m still a conservationist, save the planet!  No more plastic bags, people!

I love you!  I have to go read this and fix my typos.  Don’t be shy, now!

Serena

serenaneff@yahoo.com