Your Check Engine Light is On

Remember that time you knew a girl who was 28 and diagnosed with cancer?

Remember how she found a lump and realized something was off and then went to the Doctor, who confirmed her worst fears?

It may not have been a fun day, week, month or year but it was a necessary situation; you are responsible for your health.  You are your number one advocate.  As much as we would like all Doctors to be omnipotent, they honestly can’t know it all about every little symptom and ailment and weird rash.  And they don’t check on you 24/7; but you do.

This is your reminder, folks, to all of you who made a new years resolution to take better care of yourself: I’m checking in to make sure you’re following through.  Did you sign up for that gym membership?  Did you get that constant headache checked out?  I know in my house there are a few people (hm, Sean?) who have avoided the constant maintenance of being a human.

It would be so much easier if, like our cars, humans came with a check engine light to let us know when maintenance is needed.

But we don’t.

To avoid it all, we have to do the things that are not our favorites: eating veggies over fast food, going to the gym or getting some kind of exercise; making time for sleep; getting the weird aches and pains checked out even when our lives are constantly “too busy.”

I once prioritized my life by family, friends, job, vacations, etc.  Do you see that no where in there was “HEALTH”?

And then one day health became my only concern.  Because if it didn’t become number one on the list, none of that other stuff would be available.  Health or death.  Hmmm, decisions that make themselves.

There are some of you out there who have this nagging health concern that either you are too embarrassed about, too busy for or you think it’s “not really that bad, yet” but it’s been going on for months.  Chances are if you tell your Doctor, there’s an easy fix.  Or maybe it’s not so easy but it could make your life easier or better.  Or, I’ll see you one more, it could just save your life.

Cause, yeah, no one likes going to the Doctor.  I mean, unless you plan to be a med student and you like to geek out with the doc or you’re a hypochondriac and you need constant reassurance and someone to talk shop with you might like it.  All the rest of us hate being poked and prodded, being stuck with needles, being asked to lift an arm or cough.  When the eye doctor says “this or this” and “one or two” and he goes really fast, I feel like I am doomed to fail an unfair test; I get stressed out on trying to ace my eye test.  Or try having freckles and going to the dermitologist: I always get in trouble there!  Do they think I had any hand in the formation of my freckles, should I have stayed inside and fully covered at all times for my whole life?!

Since Sean is now my fiance, he has basically signed his life over into my hands for use in creative writing; in this case, he will be the example of what not to do.  He hasn’t been to the dentist in years nor the skin doctor.  And with his fair, red irish skin and history of skin cancer, he needs to go regularly.  But no one wants to go to a place that is going to have a strong likelihood of giving bad news and/or costing a lot of money for that bad news.

“Ignorance is bliss” is not just a clever saying, it’s true.  But it doesn’t buy you years of life.  Doing the things we hate buys us the years.  When you die, you can’t take all that money you saved by not going to the Doctor with you!

So call the Doctor and make that appointment, no dillydallying.  Even if you put it on the calendar for a month from now, and you have to ask for favors at work to get the day off, at least you’re taking what little control of your life each person can have.

As for me, things are…

Well, things are up and down still.  I have chemo every three weeks until the end of July and I hope to get my port out by September because Sean and I are getting married in late October.  I still struggle with Tamoxifen, a drug I take daily that causes unrelenting hot flashes and night sweats and insomnia.  To counteract it, I still take a light sleep aid but am advised to get off it sooner rather than later.  It’s a catch-22: every night that I skip taking it, I have a restless night of sleep with whacky dreams and constant waking up (and then I’m exhausted at work); the next day I must choose between sticking to it and another restless night or breaking down and taking a pill to ensure I can sleep. This past week I made it three awful nights without taking anything and was exhausted by the end of it; my day off was wasted sleeping and resting all day since I was too tired and crabby to do anything useful or fun.  It makes work and wedding planning that much more stressful; life is challenging without adding lack of sleep to the mix.

I want so much to stop taking this pill and reclaim my sleep but there’s always that nagging thought that my chances of long term survival depend on me taking that drug for five years.  Not one, not two: five.  I’ve heard from women who have been on Tamoxifen and have still had cancer come back.  So how do I determine if it’s really worth it for me?  If I don’t take it, I’m a quitter and I could die; if I do take it, I wont be getting a normal nights sleep for five years.  It’s a big gamble with both choices not so great.

Friends and family (especially mom and Sean), if I’m crabby to you on the phone or in person just remember that I don’t sleep like the average human and chances are I’m exhausted.  Just cut me some slack on a few things.

On a side note, Sean and I (ok, mostly I) are planning our wedding for October 27, 2013 in Maui!  Something to look forward to 🙂

Now, call your Doctor and choose water over that soda.

(P.S. Sean did make one wonderful health choice: he gave up soda!)

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So, How Was That Chemo Thing You Did?

Surprisingly, I have not yet turned into a hairless zombie.  Well, at least not completely.

Chemo sucks.  There is no way to dress that up and make it pretty.  It’s a series of strange pains that you would never know a human body could go through and no matter how the world of medicine prepared me for symptoms and side effects, there’s nothing quite like experiencing it for myself.  And then still there are no words for it.  Plus, add on the mental mind bomb of will-this-work-can-this-work-i-hope-this-works-gee-i’d-really-like-to-live.

To give you an in depth look from the beginning–because really, friends, how many people have yet to give you the close up view of self-poison for survival?–let’s start with all the pre-chemo drugs.

My appointment for round 1 was on Monday (yes, I will have an extreme case of the Mondays for the next few months!) and I showed up with my wonderful boyfriend for support.  I had gone in the Saturday before to make sure my red blood cells were up, happy and ready for destruction (more needle poking, more vein missing but they did finally extract my blood).

Step 1: Lidocaine my port site so we can shove a giant needle in and put more tape on the area (you’d be surprised how much adhesive I find all over my body days after surgeries and tests… I’ve even found EKG stickers on my back, these ones are about an inch big with a metal button in the middle).

I just look away during all of this, the ceiling tiles are real nice right about now.  I am getting used to being poked and hooked up; the nurses are really nice in the chemo center so it goes pretty quick.

Step 2: Anti-nausea drugs times 3.  Five pills by mouth and 30 minutes of an IV bag o’ anti-puke.  They sure are serious about this nausea thing!  And after the fact, I wish they’d be as serious about the mental slowness and general cloud I feel from all the drugs cause that part is what really messes me up.

Step 3: Chemo.  Two giant needles of a bright red Adriamycin, appropriately colored as it will slap my heart around and give it a run for its 28 year old money.  I was peeing red before I even left the chemo center that day.  I was proud to get that stuff OUT but sadly, it was probably just the dye that was coming out and not the actual evil chemicals.  As the drug went in, it was expected that I would taste metal so I ate ice chips.  But I did not taste metal!  Yay, thanks, taste buds, for hangin’ in there; still smelling doggie farts and all.

I didn’t feel any different.  The only thought I had that let me know I was on chemo now was: are we really doing this?  Yup, guess we’re really doing this.  Oh, and the total inner meltdown I was experiencing while in the chair as I thought about this just being the beginning of a very challenging year to come and the ever-present scrolling thought of why why why why why why why why why why why why that has been on repeat since March.  I was a total freaked out mess on the inside and a cool cucumber on the outside; why hello, hermit crab.  I could be a secret agent, I’m that good.  Plus, what’s the point in freaking out externally when I’ve made my decisions; let’s just do this, get it over with ASAP and move on.

The drugs were now floating freely around my body.  I imagined them like tiny Swiffer Sweepers circulating my body and shuffling the cancer cells out.  I’ve heard visualization techniques are supposed to be nice for the over-active minded.  And I’m willing to try anything.  So Swiffer away, drugs.

The next drug, Cytoxan, was pushed over 30 minutes and I was told to let them know if my nose tingled and/or I got a headache. And if I didn’t let them know it would just get worse.

It tingled.  I got a headache.  But it was towards the end of the bag.  That just means that next time they will push it over an hour to minimize those side effects.  Does that mean it’s working?  Sure, sounds good.

Sean picked up all my take-home drugs: two bottles of anti-nausea and 7 days worth of self-administered shots (though, he did do the practice one for me since I just couldn’t do it and he did well) to boost my immune system.  I just think every part of chemo is kinda sucky and gross.  Shots at home?  Sucky.  Anti-nausea?  Gross.

The rest of the day was fine.  I took anti-nausea meds twice a day for a few days.  Tuesday afternoon I felt like I was going to lose my cookies but luckily I fell asleep instead.  I ate when I could, small meals constantly.  When I started to feel a little nauseous, I ate.  It worked.  I might hate ginger ale already though; apple juice works pretty well.

The hardest part came on Saturday and Sunday, the days when my immune system us supposed to start to plummet.  Those days I just felt exhausted.  And then I was frustrated because intellectually I had no good reason to be exhausted, I didn’t do anything.  I didn’t climb a mountain and snorkel all day or work a 50 hour week.  I just woke up, cooked some bacon and almost passed out.  I’m 28!  What the hell.  Fuck you chemo.  I hate that this is going to continue for a year, that next Monday I have to do it all over again.

I struggle with hating that I have to do this and trying to accept it so I can just get through it and be done with it.  And do it well.  Chemo kills my motivation.  But worse.  My motivation is there but it’s out of reach; I can’t have it.  I just stare at it and ask it to wait.  I’m a doer.  But now I have to be a doer of little things.  Like drinking a glass of water this morning.  Booooring!  I’d really like to go snorkeling and go back to work, back to making money and being busy, trekking all over Maui with a cute puppy dog and man-friend.  But instead I’m…. sitting.

It will be most difficult for me, in all of this, to listen to my body and be OK with doing what it wants.  Those inner demons are the little shits that taunt me to do more when I just can’t do it.  Hell, I get winded standing sometimes!  Granted, it’s summer in Kihei, Hawaii at 11am… it’s hot.  Even the dog is passed out.

My hair is still present and in tact but the nurses and doctors say is takes two to five weeks for hair loss and I’m only at one week.  My scalp did tingle a little on injection day and since and it has been itchy.  We’ll cross that bridge when we need to.  It is the look of chemo, to arrive on the threshold of beating back cancer when the hair is falling out and gone.  We’ll see how I feel on that in a few weeks.

“Always remember to slow down in life; live, breathe and learn; take a look around you whenever you have time and never forget everything and every person that has the least place within your heart.”

Cancer, You’re Being An A$$hole!

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

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

“I’m start chemotherapy in June.”

“Oh, what for?  Do you have cancer?”

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

“So, you have cancer?”

“I don’t know.”

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

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

A short stint into words…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Serena, you’ve won.. A. NEW. CAR!!!!!

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

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

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

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

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

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