#NerdsUnite: Pursue with Courage (one nerd's journey through chemo & cancer)

<editorsnote> Nerds, meet my buddy Serena. She was one of my only friends growing up as we were play buddies at the lake in NH and I found out via Facebook while I was en route to a conference that Serena has cancer. She is here today to talk about her side of things and the journey this disease is taking her on. I only have one more thing left to say ... HIT IT SERENA!! </editorsnote>

#TalkNerdyToMeLover's Serena Neff

Happy new year everyone!

First and foremost: Santa has already made good on my request… I have a head of hair, new eyelashes and new brows growing in!  I look less like an alien (just less, right brothers?!); and also less “sick.”  My hair grows so slow, and I should know… I stare at it a lot in the bathroom mirror willing it to be long again.  I shall just have to see what Miss Anne Hathaway does to hers as she grows it out since she is a few inches ahead of me. So trendy, the styles to come!

I also found another famous twin with my hair style and glasses… Christoph Waltz from Django promoting his movie on Live with Kelly and Michael!

I got a new tattoo (my second real one… it’s a lot more common 1) “these days”, and 2) in Hawaii where everyone runs around half-naked and covered in colorful, usually meaningful, art work).  Mine is a key (to Sean’s heart… he has a locked up heart tattoo) with a whale tail (a Hawaiian humpback of course!) surrounded by a pink ribbon.  It’s on my wrist where I can cover it for work.  But if I don’t have to, I leave it out.  I’ve gone back to work on the boats and between the tattoo and the new hair, I have had some questions from some very curious women (so far it’s always been women, the observant sisterhood they tend to be).  I had someone outright ask, “What kind of cancer?” and later another woman said, “Ah, I saw your tattoo…” and I even got, “So, what’s the story behind your hair?”

All of these questions are just fine by me because isn’t this cancer something we can all relate to and should be talking about more?  I find a lot of women that ask have either had some kind of cancer themselves or have been a care-taker.  The woman that asked about my tattoo was on the boat for a photo safari with her thirteen year old son who had been battling leukemia–mainly via chemo–for 3 and 1/2 years.  He got the clean bill of health blessing and so his family brought him to Maui for his first real vacation since he’s been diagnosed.  I may meet thousands of people in my line of work (tourism) and everyone has a story.  It’s what we’re here for, this living thing!

I completed radiation in mid-December and have been dealing with the after-effects of that.  Basically, imagine the worst sunburn you’ve ever had, on the softer skin of, say, your armpit.  Now imagine sitting in the sun all day for five straight days after that without wearing sunscreen.  That’s kind of how it works, or at least you can imagine how skin looks and feels after that!  The actual radiation zaps are quick and invisible; much of the redness, irritation and itchiness comes later.  Mine was deemed red enough to warrant a prescription for burn cream.  I hug with my left arm only these days.  And it is healing and fading.

I mentioned earlier that I am back to work, I am.  I also juggle unemployment insurance and work, at least through the end of December.  I started back at the Ritz-Carlton Kapalua as a naturalist at the Ambassadors of the Environment Program (tomorrow is my first “big” day) and have been nannying some.  I hope to be back full time to work in January, spread between my multiple jobs; and remembering to take days off.  I do function best with my calendar in hand and staying busy.

Sean and I are starting to think about an official vacation in May or June or July.  I haven’t been “home” to Massachusetts and New Hampshire in three years and I’ve never been to Chicago (where he is from).  Ah, it sounds so nice.  Even though we live in paradise–Maui–we still need to take vacations!

Chemo continues on through August, once every three weeks for a light dose of “easy stuff.”  I also have in my possession the drug Tamoxifen.  A drug that I have yet to start since it will give me the lovely side effects of hot flashes, night sweats, and insomnia and can be most difficult for the first three months.  My goal is just that: make it through the first three months and then reassess.  Ultimately, I need to take it for five years (five years of hot flashes starting at age 29?  Tell me, ladies, is that fair?!  I would still not, then, be excused from hot flashes later in life; unfortunately, there’s no “quota” that I can finish early!).  Research shows that 2 years of this drug is great for cancer-free survival; 5 years is awesome; and ten years is no different survivorship-wise than five.  I’ll take five over ten any day!

I’m also, technically, “cured.”  I’m set free from the majority of treatment and on to monitoring and life.  I will get a blood test soon to make sure my body is bouncing back from chemo and radiation.  And more tests eventually to keep an eye on things, making sure those little cancer cells don’t pop up somewhere new.

Most importantly, Sean and I celebrated our engagement at a party thrown by our awesome friends, Ashleigh and Thomas and Gene and Leigh.  We had so many wonderful people come and share in delicious food, lots of wine and say such beautiful things.  It was an emotional time but probably one of those nights that will stand out for the rest of my life, not just because of the significance of the event but because after all I and we have been through, life still felt “normal,” and normal in the best sense that word can be used: life was moving onward and upward with hundreds of hands holding us and pushing us up.

#nerdsunite

click here to check out Serena's blog. Very powerful stuff.

#NerdsUnite: Pursue with Courage (one nerd's journey through chemo & cancer)

<editorsnote> Nerds, meet my buddy Serena. She was one of my only friends growing up as we were play buddies at the lake in NH and I found out via Facebook while I was en route to a conference that Serena has cancer. She is here today to talk about her side of things and the journey this disease is taking her on. I only have one more thing left to say ... HIT IT SERENA!! </editorsnote>

#TalkNerdyToMeLover's Serena Neff

I’ve been waiting and waiting for something to happen to break up the monotony of the chemo and cry cycle.  What better time to finally write then right after the Stand Up to Cancer telethon.  I mean, when there’s the cutest spunkiest five year old ever dealing with brain cancer, how can I complain?!

Don’t get me wrong, everything about cancer sucks big time.  Chemo has been going as well as can be expected but the hot flashes and insomnia are regular events.  Sleeping pills and pools help that.  It’s more the cyclical what-am-I-going-to-do that really drives me crazy.  I’m restless but can’t seem to figure out how to go back to work when I have the demands of radiation looming in front of me.  I want to be cool and at the beach but have to be wary of the sun and can’t seem to find the motivation to do any one thing.  I just run circles in my brain talking myself in and out of things and end up with a non-productive day!

Sometimes I don’t write because I don’t want to let all the hopeful folks down.  Then Sean reminded me that some people are reading this because they too are experiencing the same shit, and perhaps they just want to read and say, ah, yes, me too!

I’ve been really angry lately that cancer has upset my life’s forward momentum.  I feel stagnant; there’s nothing I’m currently involved in that is enriching my life.  Sure, Sean and Scupper, family and friends enrich my life.  But that isn’t enough for a well-rounded, full life.  Everyone keeps reminding me that I need to just focus on my health and getting better for right now and then I can add on from there.

But it’s hard to just focus on my health.  It’s hard to be tired and not really know if it’s from chemo or if it’s from the fact that I went from working 50+ hours per week at three different jobs to watching TV and being lazy, waiting for my body to process chemicals.

And then I feel like I’m saying the same thing in every blog!  How do I get beyond this restlessness and change the circumstances?  What is the right thing to do?  Go back to work?  Apply for long-term disability?  I keep waiting for the right thing to make itself clear but nothing is coming in.

Write a book you say?  Look how little I’ve been writing a blog; it appears that I do not have the motivation for even this right now.

I go to chemo every Monday and honestly that is the only time I feel like I am accomplishing anything.  My blood work has been great; I asked if we go make the doses more frequent so I can get through them faster (no dice).  Six more weekly doses and 12 more every 3 weeks.

I started swimming laps at the local pool last week.  But I struck out today because the pool is closed until the afternoon.  To most people, you say well, go later or go tomorrow and I’m sure I will.  But from my view, I’m finally committing to something and the universe gave me a big fat  for it!

Am I really supposed to sit on the couch all day??

Physically, 90% of the time I feel fine and good even.  I’m on antibiotics for a sinus infection, which means stay out of the sun (for two more days).  My hormones are all over the place and I can’t seem to figure out if they are from the chemo (obviously, the Doctors have said yes, chemo does change hormone levels big time) or I’m just losing my mind.  Sean deserves sainthood for his patience and listening!

I know I know, I said “how can I complain” and then I showed you how.  I suppose you could say I’m still just telling you how how it is.  Sure, there are people who have it worse than I and it’s incredibly unfair when a child has cancer but all I can speak for is myself.  And for me, it royally sucks every day to live with this “disease.”  The best I can do is to distract myself from thinking about it every moment of every day.  And so far my daily distractions are watering the garden, petting the dog, talking to Sean, meals, dishes, cable TV, occasional outings to the grocery store, Jamba juice, the pool and the dog park.

When Sean is off work, we go on little adventures: La Perouse with Ash and Tom, meeting Steven Tyler outside his house in Makena, Hana.  You know, the usual.

It’s working, time is passing.  But is it enough?

October 15 is my last weekly dose with Taxol.  Soon after that, my hair will start to grow back and hopefully the insomnia and hot flashes will ebb away and disappear.  It’s a lot closer now than it was 3 months ago.  I’m just trying to focus on getting to that date so I can cross Taxol off the list and move on to the next part of treatment.

#nerdsunite

click here to check out Serena's blog. Very powerful stuff.

#NerdsUnite: Pursue with Courage (one nerd's journey through chemo & cancer)

<editorsnote> Nerds, meet my buddy Serena. She was one of my only friends growing up as we were play buddies at the lake in NH and I found out via Facebook while I was en route to a conference that Serena has cancer. She is here today to talk about her side of things and the journey this disease is taking her on. I only have one more thing left to say ... HIT IT SERENA!! </editorsnote>

#TalkNerdyToMeLover's Serena Neff

“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.”

#nerdsunite

click here to check out Serena's blog. Very powerful stuff.

#NerdsUnite: Pursue with Courage (one nerd's journey through chemo & cancer)

<editorsnote> Nerds, meet my buddy Serena. She was one of my only friends growing up as we were play buddies at the lake in NH and I found out via Facebook while I was en route to a conference that Serena has cancer. She is here today to talk about her side of things and the journey this disease is taking her on. I only have one more thing left to say ... HIT IT SERENA!! </editorsnote>

#TalkNerdyToMeLover's Serena Neff

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?

#nerdsunite

click here to check out Serena's blog. Very powerful stuff.