Where are you now?

Wow, it has been a long time.  You have probably noticed by now that I have a tendency to disappear from the blogosphere for long stretches.  And part of that is that, yes, I am “cancer-free” and haven’t felt the urgent need to write as often as I did when I was going through chemo.  During that time I felt like I would burst with all of the emotions I was going through.

I have since realized that even though the bulk of that journey is over–all the diagnosis and treatment and wrapping of the brain around the impossible–it will never be totally over.  I hope it never comes back but I have to remember that it’s always a possibility and never let my guard down.  I’m just now finally in the process of moving on to bigger and better things, things that don’t involve the day-to-day all-consuming health concerns of my life.

Just things that involve the major life changes of marriage, moving and searching for a new career.

Cause, you know, once you beat cancer down there’s no excuses left to not be living the life you want.  Even now as you read this, please consider one thing: would you want to wait for cancer to come into your life as the mechanism that made you chase your dreams?  Because if the answer is yes, don’t forget there’s that whole you could die thing attached to that choice.  I suggest the other option 🙂

So yeah… in the last year or so Sean and I made it through some major milestones and we’re still working on some right now.

We planned a wedding and were married in October surrounded by close family and friends.  We had a small ceremony in Maui (we technically got Maui’d).  I was never the big crazy wedding kind of girl.  Don’t get me wrong: I always wanted to get married; I just didn’t want the big to-do.  I don’t like trying on white dresses I will only where once, or picking the exact right placement of people at a table, or simply planning events.  I admire people who do love all of that and I understand why wedding planners were put on this earth.  I mostly just wanted to take every person who touched our lives in a positive way and drop them onto an island and stay together forever with great food, drink, dancing, etc; but we had to be realistic.  We had been stuck on Maui (please do not be offended or miffed when I say “stuck,” just hang through it and you may understand what I mean) through cancer treatment and so we decided, Ok, the wedding will be our last Hawaiian Hurrah (for the time being… maybe we’ll retire there one day).  We knew it would soon be time to move off the island if we wanted to pursue other life goals (that list will be available shortly in this reading).

Post treatment and with a return to work, I quickly realized that I could not physically do the job I was doing for much longer (cleaning up after tourists on a boat while trying to teach them about whales and encourage them not to injure themselves because they had never been on a boat before).  I was exhausted every day, I was too hot every day, the pay compared to cost of living meant we would never get ahead.  It was frustrating to work hard and feel like it wasn’t getting me to where I wanted to be.  We committed to putting our wedding together in the place where we had fallen in love so that we could leave Maui on a positive note with the last thing we remembered as something amazing and happy; only a wedding could trump cancer memories.

With lots of help, the wedding went wonderfully.  It just went by too fast!  We spent the week with family and friends and had a quick honeymoon to the Big Island (we had taken a pre-wedding vacation to Chicago and Boston).  Then we buckled down at work as whale season arrived, assuming in the back of out heads that this was going to be our last winter season on Maui and enjoying it for what it was.

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I’m not sure many people believed we could leave such a beautiful place.  But we were steadfast in it.  We had lived in Friday Harbor, WA a few summers ago and we were ready for a big change, a big CITY change, one with sports and music and stores and family and cheaper plane tickets.  Sean began looking at houses on Zillow; we were so excited that the what we paid in Lahaina for a tiny one-bedroom could actually stretch a lot farther in Seattle, Washington!  Ah, the American Dream.  The potential of the future kept us focused on the short-term goals.

Finally, we sat down and made a plan, a plan that involved plane tickets.  We had selected our dates.  We got boxes and started packing; we made plans to ship one car; we started selling surf boards and bikes and all the extras we had accumulated over 14 years (Sean) and 4 years (me).  We told friends and family and work.  We checked in with the brother and fiance in Seattle and found with them a temporary landing pad as we navigated the area.

We even made a conscious decision to do something completely unheard of and out of character at least for me: we were going to move without jobs.  Scary.  Never before had I moved without job security.  This is when I had to really embrace that whole fuck you cancer (and you thought I could make it a while post without a curse word, ha!) and decided that we had earned some solid time off.  We earned the right to chuck the calendar in the ocean for a little travel and adventure during our move.  We have been through a lot over these last few years; it was time to reach for the tree, jump off the bridge and hope that bungee cord stretched (we’re still stretching the bungee cord).

Whale season came to an early end on the whale side of things which made it a little easier to leave work; saying good-bye to friends was hard of course though.  At the end of April, movers came for our stuff and we sold almost everything else.  We flew to LAX where the car had been shipped and prepared to road trip up the west coast to our final destination of Seattle.  Consider it honeymoon part II!

We coordinated with many family and friends so that we could see lots of familiar faces that we had missed over the years.  We emptied out my storage unit in San Clemente.  We ate so much good food and saw beautiful sites.  We acclimated to new weather patterns along the way.  We considered ourselves “temporarily retired,” and spent time making memories that will last a lifetime.  Major stops included Orange County, Santa Barbara, Santa Cruz, San Francisco, Sonoma, Fort Bragg, Oregon Coast, Portland, Kalama and lastly, Seattle: our new home!

And I gotta say… I love it here.  The number one thing people said to me when I started telling them I was moving (and people still say it when I tell them where I moved from) is “don’t you know it’s cold there?”  Um, yes, we know that it does get cold and dark and rainy.  Got it.  But can you maybe consider that there might be a greater reason(s) that lead to our decision to move?  Perhaps these folks could look at the positive side, especially since we had already bought the tickets (or are already here!).

So in case you were wondering why we chose to leave Maui for Seattle, let me outline it for you in the top ten reasons why we moved:

10) More for your money in housing.

9) Groceries are cheaper aka affordable; no more $5 milk!

8) Weather: I’d like to feel a little chilled/cold on Christmas, it’s OK!

7) Stores.

6) Sports, music events, festivals, shows, ballet, the symphony…

5) Flights to friends and family are affordable and shorter.

4) Greater job opportunities and better pay.

3) Hiking and green spaces for Scupper… snow for him to make yellow.

2) Qualified, capable, smart, modern MEDICAL CARE and doctors… even some that specialize in breast cancer and family planning.

1) Family and friends are way closer!

And as I learn more about the city, there’s even more great reasons that Seattle is a perfect place for us at this point in our lives.  Maui is just a plane ride away too.

As I wrap this up, let me just admit that the number one challenge I face right now is: what do I want to be when I grow up?  I am currently job searching but I have not idea what I want to do!  That’s the hard part.  I am applying for jobs that sound like they would be fun and provide room for growth.  I’m looking for anything from conservation, science, biology, lab work, and education to medical, office and editing work.  But I am going to be a little bit picky… I did interview with a boat company and received a job offer but I turned it down.  Yes, it’s a job but I don’t want it.  I did it once before and I need a change now.  I’d like a big girl job, maybe even one where I get to dress up…

We also have to find a more long-term place to live.

We shall see what the future holds for Sean, Scupper and I.  For now, we are enjoying our new city and welcoming new adventures!

“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

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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.

Boob-gate 2012

What a whirlwind!

First of all: mahalo nui loa, thank you big time.

You have all followed the rules and found your own way to get through this with me.  I have received countless texts, emails, phone calls, Facebook posts, tags, blog posts and even a few hints at snail mail to come.  Wow.  Just wow.  Thank you from the bottom of my heart, you don’t know how much it means to me.  I didn’t realize how far and wide the circle and waves reached.

I am not at all the person that puts myself out there.  I prefer to be private.  If I was a celebrity, you would see more pictures of my hand in OK magazine than my face, and the paparazzi would be trying to dig dirt on me but I would be changing my cell phone number and posting only pictures of my dog.  I’d also be the one with the dirty mouth and lawsuits against Star mag.

But in this situation, I had to get a lot of intense information out fast, far and correctly so I decided to do a personality u-turn, rip off the band-aid and blog it.  Everyone has a blog these days anyway!  Word spreads like wildfire with technology; and between the combination of technology and this generation of “experience everything everywhere with every person you can find,” my circle of friends and family is big and international (hey you Aussies and Canucks out there!).

I wanted this to be my words, and not so much the grapevine and the “hey, did you hear?”

And mostly, I wanted Sean, my parents and my brothers to have a way to share the burden.  Really, we’re all sharing the burden.  And I feel lighter by it!  This is the place we go when even words are too difficult to speak.  When you don’t know what’s going on and you’re not sure if you should ask.  When I cannot vocalize all the shit that goes through my head and all the emotions that go through my heart, we come here.  You read it, hopefully laugh, sometimes you cry, you share; you keep living.

When the blog idea became part of the cancer plan, I googled (where else would we start our research in this day and age?!) where I would start my site (WordPress came up first and I liked that it didn’t use the word blog in it’s site address), and signed up and stared at–duh–the start page.

Big problem.  What the hell was I gonna call it?  “Serena’s cancer”?  Boring.  “Cancer journey from Maui?”  Ooh, tropical but boring.  “My boob harbors a fugitive”?  Haha, but not appropriate.  This was not an easy task to come up with a title (or a TIT-le if you’re feeling the need for corny).

And it finally hit me.  I’m 28.  Cancer has been in my reality, my non-ignorant world for six days.  Six days of 28 years.  F that!  That C word ain’t touching my title, because I don’t plan on keeping it or ruling my life by it.  It is what made me start writing but it’s not going to be the only thing I have to say.

But what would I rule my life by?  What have I ruled my life by?  What will I always tell you to rule your life by?

Obviously, read the title, people.  Pursue with Courage!

Are you going to read this blog with courage because you might throw up at the thought of someone you know, someone my age, someone your child knows, etc having breast cancer?  Are you closing your computer and contemplating your life and morality with a little courage?  Are you calling your parents/siblings/friends from long ago and putting aside old issues with a little courage because your perspective on what’s really important just changed?  Will you realize that time is precious, and that relationships and being our best selves are all we have and that waiting on that job to come to you, or the other person to start the conversation is a waste of your innate courage?  You damn well better!  Get of your butt, put on your big person pants, go to your dirty laundry basket and dig around for your ball of courage, dust it off, shine it and hackey sack that thing around!

And just in case I said that word so many times it has lost its meaning, here’s a little lesson:

cour·age

noun
1. The quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.
2. Obsolete . the heart as the source of emotion.
Ok, ok, you can keep a little fear.  But only for motivation.  Like when I’m fearful of spiders in my shower, I use it as motivation to wash them down the drain and recognize that it was a courageous effort.  Hey, don’t fault me.  I love nature, I love bugs but if you’re in my shower, you crossed the line.
Tomorrow is surgery day.  I’ve been assured that they will not need to take too much out (I have little 32Bs, there’s not a lot for removal so those cancer cells had better have stayed local and small) and that I will be headed home after.  I’ve got a party bus of four coming for support: Sean, Mom and Dad and Ash.  We’ll be going in at 8am HAWAII time (if you call me at 8am east coast time, we won’t be friends anymore; Sean will tell you how much I AM NOT a morning person, especially a 2am morning person!) but my appointment time is on island time; meaning, whenever.  You can call my mom (Lauren) or look for Ash’s post or wait for mine.  They told me they didn’t want me to stagger out of the hospital so I expect to be walking in full consciousness by the time I leave!  And I can type with my left hand (my right boob is the culprit, there, now you know which boob to blame–and I had a clean mammogram on Wednesday so no other tumors in the boobal region) so I will update when I’m sober (yeah, cancer will lead me to hardcore drug usage of mild pain killers, watch out).
And as I gear up for surgery, Mr. Michael Ray, a friend and coworker is recovering nicely from brain surgery!  He had a cyst that pressed on his cerebellum and built up enough pressure that by the time he had surgery, it burst.  But the outcome is good and healthy!  We’re thinking we may have to blame work for our issues… 🙂

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