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.”

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C Word Squared

Well, folks, we’ve reached that inevitable point that all too often comes with the cancer diagnosis: my doctors have recommended the torturous life-saving intravenous drug combination of chemotherapy.  Another daunting C-word.

This suggestion came on the lovely holiday know among Bob Marley fans and those who rocked it in the 60’s as 4/20, or: the day of reefer.  Ironic and appropriate I suppose (I do love my ironies), is this a sign?  It let’s me know that someone Upstairs is smiling down on me with a case of the giggles (and in this instance, the munchies).

I met with my oncologist—my brother Ethan in tow for moral support, to ask the questions when I couldn’t form any more and to listen when I went blank—and the Dr. pulled out the rasta-colored mortality charts and cancer recurrence charts.  Excuse me, but I’m only 28, I still kind of sort of maybe believe I’m IMMORTAL, like I was then I was a teenager and doing stupid things in college (making those bad, immoral, sometimes borderline unethical decisions, all with a beer in hand).  Parents, you know how we are; and remember, you were once immortal too (in each our own opinion).

To show me a chart that talks about my chances of being alive in ten years if I A) choose no further treatment, B) choose chemotherapy only, C) choose hormonal therapy only, or D) choose both treatments is a bit overwhelming.  Why at 28 years of age am I looking at you-could-die charts?  Thanks for yet another reality check.  Anyone reading this just fucking surprised that we’re really doing this?  Yeah, me too.  Those of you that are in my age group–say 5 to 10 years on either side–doesn’t it blow your mind?  Maybe I just need to approach this with the belief–er, hope–that maybe the karma police have thrown this my way now so I can get it over with and then have a healthy future and live to 90!  If only the world was guaranteed to work that way…

It’s been a few months and I don’t feel like I have cancer; my day-to-day health hasn’t changed (other than I have more free time to eat better and walk more, but can’t always do my ocean activities), nothing seems different, I don’t have any open wounds, I’m healing from the surgeries but they don’t make me feel sick.  This disease is bullshit.  And no, karma gods, I’m not asking to feel like shit; I realize that if that does come then I’m really F-ed.  I just have a hard time looking at chemotherapy treatment and saying: yes, even though I don’t see you or feel you, cancer cells, I have to pretend you MIGHT be there and poison my whole body just to kill you off.

Chemotherapy and hormone therapy are know as “adjuvant therapy,” which I will translate for you as “big giant leap of faith because we have no idea what you have cancer-wise and where you have it but just in case you do have it we have to attack it with drugs that have every horrible side effect imaginable.”  That is a direct synonym translation… or should be.

And excuse me if I am being a bit dramatic—I reserve the right to—but as an eco-friendly semi-hippie I do not really agree with opting to add toxic chemicals to my body (have we learned nothing from killer whales and PCBs?  http://www.sciencedaily.com/releases/2007/09/070910094122.htm).  Especially to a seemingly healthy body!  It just doesn’t MAKE SENSE!

But as a scientist, I completely get it.

I know that the drugs may kill off a bunch of my healthy cells, but they should–ideally, optimally, hopefully–kill off the floating drifting cancer cells too.

I finally broke through to my oncologist, after about fifteen questions via phone about having babies, fertility, babies, hormones, when can I have babies, post-chemo health and a drug-free life for having babies, and babies, babies, babies (and let me reassure you I don’t want a baby right now but it’s kind of important for me to have the option to have that experience in my future, my very healthy future), that I am understanding the need for treatment in this form and that I am open to it but that I have other priorities to factor in… like babies!  His response was that he honestly hates the idea of recurrence, of cancer returning, and he’d like me to be around to see my kids grow up.

Yeah, me too.

I can’t create a life if my body is not capable of supporting it in health, and when Sean and I do decide to have kids, it would be nice to know that I will be around for it/them to grow up.  I would never want to say no to an option for survival and then regret it; I’d rather err on the side of doing everything in my power to be without cancer, and to ultimately be with many more years, decades, of survival and existence and life.

But still, what if there isn’t even any more cancer cells floating around my body?

Conundrum.

It is important for you all to know that because of my young age combined with what the pathologists found after my mastectomy, my cancer is considered fairly aggressive.  It went from a 2 at lumpectomy to a 3 at mastectomy.  Yes, not only do I have the usual smart cancer but mine appears to be AP student cancer!   It likes to spread and spread fast.  Bravo cancer!  Next time, don’t be the smart kid who becomes like the uni-bomber; strive to be the smart kid who… develops a cure for cancer or something.  Use your intelligence for good, dear cancer, for good.  (Dear US Government aka Big Brother, if you red flagged me because I typed “uni-bomber”, I apologize; I didn’t mean it.  Please un-red-flag me, I’m trying to save the environment.)

There is a computer program that was used to generate my risk assessment (those troubling mortality and recurrence charts) and shared decision making, and what was entered in and specific to me is:

Age: 28

General Health: Excellent

Estrogen Receptor Status: Positive (most breast cancers are)

Histologic Grade: 3 (was a 2 at lumpectomy; became a 2.5-3 at mastectomy; 2.5 makes me feel better)

Tumor Size: 1.1-2.0 cm (mine is technically 1.4 cm; 1.1 cm from the original mass and an additional 0.3 cm found during tissue-overhaul via mastectomy)

Nodes Involved: 1-3 (damn ranges!  For me, it’s just 1 but they had to select a range)

Chemotherapy Regimen: Third Generation Regimen (the recommendation I believe)

The good news is that I am on the low end, or the better end, of most of the entries from above but we like to “plan for the worst and hope for the best.”

Because that one lymph node was involved, it’s possible that it let a few cancer cells sneak by and travel around my body, where they could still be traveling or have found another organ to harass.  We just don’t know (see adjuvant therapy definition above).

We also don’t know if the mastectomy got it all as I mentioned in the last blog.  I will likely still have to have radiation of the chest wall after chemotherapy just in case the cancer went into—or plans to go into—my pec muscle.  Yup, cancer can do that, smart cancer.

My current treatment recommendation is: Adriamycin/Cytoxan every 2 weeks for 4 cycles (2 months), followed by Taxol weekly for 12 weeks (3 months) with Herceptin weekly then every three weeks for a total of one year.  Followed by radiation of the chest wall.  Oh, plus I need to finish my implant surgeries (likely after and not before since I can’t really have any open wounds as my body wont be able to easily heal itself and I will be prone to infection).  And Tamoxifen (hormonal treatment) orally for five years.  Holy shit.  Is your mind spinning?  I’ve had to ask three times now to be able to somewhat understand this so-called “plan.”  FIVE F-ING YEARS of drugs?  Oh, and I have to have a port put in!  Almost forgot about that.

WHAT IF I DON’T EVEN HAVE ANY MORE CANCER?!

Adjuvant therapy, leap-of-faith; peace of mind for my future, take out the what-if cells.  Breathe, Serena, breathe.

I’ve done some research on the side effects, and of course every one is different in how they react to the drugs, but here are a few: hair loss (that’s a big one that many of you know), mouth sores (sounds gross; alcohol-free mouthwash and lots of ice chips are supposed to help), sensitivity to the sun (I live in Hawaii!  Ugh.  Sean offered to move if need be… Seattle sure sounds nice and rainy, but I’d rather be able to look outside and at least have the sun as an additional goal and also not uproot us unless it’s in line with other decisions), decreased appetite/nausea/vomiting (red flag right there that chemo goes against the body’s survival instinct; do I have to starve out my cancer cells?  And don’t worry, team, I’m well aware that I’m already too skinny and I’m trying to bulk up for if and when I do this… I ate 4 blueberry muffins over 2 days to jump start it, that’s big for me!  If anyone needs a partner in calorie crime, call me, we’ll do fries), change in menstrual cycle (as in no more and not to return until after all this; hellooooo?!  babies, babies, BABIES!), tingling of fingers and toes (as if my armpit numbness isn’t enough!), muscle aches, bone pain, diarrhea (hey, look, more shit!)

And chemotherapy may not even work.  Some cancer cells wield what equates to an anti-chemo shield where the chemo has no impact on disrupting or causing suicide in the cancer cells.  Leap.  Of.  Faith.

I have some tests and meetings coming up and I spend a lot of time writing questions, researching and calling my Doctors.  More appointments abound.  You know, I thought my oncologist would be the center point in all of this chaos, the one who looks at my whole chart, my surgeries, my wishes and makes decisions based on that.  But he doesn’t really.  I do that.  I have to take what the surgeon says and what the oncologist says, then call my gynecologist and talk babies, then call the radiation oncologist and plan to zap my boob, then call the plastic surgeons and work reconstruction in.  There’s no one in Kaiser or my current medical world who is ground control on my files, wants and wishes.  Don’t worry, team, I’m seeking a second (and maybe third) opinion just in case I need more options.  I know how it can go in the medical field, but I’m not just a number or a statistic–or a statistic-to-be–I’m a human life and that’s all I have.

I have replaced my sense of purpose with not saving the planet and the oceans but with saving my life and as much as I know I have to do it, I can’t help but feel a little selfish, a little lost.  It’s all-consuming.  When my world has gone from something so big as teaching the world to save the world to trying to save or salvage my own life, it just renders me at a loss for words; it just isn’t me.  It’s not my ideals or how I was brought up, I’m supposed to do more with my life, be more.  But it has to be me for now.  Because if I ever want to reach my dream job of Conservation Biologist of Marine Species (ok, there’s wiggle room in the title since that job may not exist perfectly in the way or location I’d like it to) and if I ever want a family, I kind of have to be alive for it first.

P.S.  Heard on the radio today that Kenny Loggins is coming to Maui June 8.  Might have to go… “I’m all right, don’t nobody worry bout me…”