Rock-tober

Oh, it has been so long.  I keep telling myself not to wait so long between posts!

But… it has been a long month…

It’s Breast Cancer Awareness month; I went back to work part-time; I finished the horrible-nasty 5 month part of chemo; Scupper the Wonder Puppy turned one year old; we survived another tsunami here in Maui; Sean and I got engaged…

Oh, yes we did!  My lovely man friend is now my fiance and Scupper’s parents are going to be legal!  Woohoo!  We went out to dinner on October 18th to celebrate the end of the yucky chemo, and Sean surprised me by getting down on one knee and popping the big question.  I’m so blessed to have him in my life.  Without dealing with cancer, he’s wonderful.  And with the cancer part?  He’s been my rock and my motivator, he keeps me laughing and doesn’t go easy on me in Fantasy Football (but why should he… I’m #1 in the league!).  I know that no matter where we are, what we’re doing or what we’re going through, we’re in this life together (and with a very cute puppy dog too!).

 

(Ignore the ugly wounded boat hand; just look at the beautiful Rock(s)!)

The end of the horrible nasty chemo was a wonderful day (October 15th).  But the two weeks following it were rough.  My stomach had to adjust to that thing it once knew as “normal”; you know, no anti-nausea drugs in the system, no evil Taxol coursing through my veins, stomach lining probably regenerating itself (gross, man).  I’m still waiting for my eyelashes and nose hairs to come back.  My head hair is coming in ever so slowly (Dear Universe, if ever there was a time you wanted to allow me fast-growing thick hair, NOW IS THE TIME!  I’ve had slow-growing, straight fine hair my whole life, let’s switch it up for a few months!).

Chemo now is every three weeks with a drug called Herceptin that focuses on blocking estrogen-receptors in the [hopefully nonexistent] cancer cells.  This will make the cells decide that they can’t replicate so easily anymore and they will become quitters, give up and die off.  Visualize.  Visualize.

I finally figured out that I don’t have to tell people I HAVE cancer or had or have had or once had it; I will just say “I’m being treated for cancer.”  It sounds so much nicer, doesn’t it?

Treatment now also includes the start of radiation.  Basically, this “aggressive” breast cancer has to be treated with everything possible and I mostly accepted that long ago when the Docs first began uttering the “chemo” word.  Going to meet with the radiation oncologist, she kindly asked me if I still wanted to proceed with radiation.  Just a reminder that it’s all my choice.  I don’t look at it as much of a choice, really.  How could I see it that way when it’s radiation and survive vs. no radiation and worry about recurrence and/or death every day for the rest of my life?  Well, I will still worry about it with radiation but hopefully less.  Choice made; let’s start it so we can finish it and move on!

I got three tattoos as part of my radiation mapping.  They are about the size of a pencil dot or a smidge bigger than the tops of the “i’s” in this blog.  And I have a bunch of sharpie writing all over my chest too.  I will be zapped from my collar bone down to below my right breast and from the right edge of my sternum to under my arm slash outer chest wall area.  I had a mastectomy; technically, I have no breast tissue left but I still have to get zapped.  Those little fuckers (aka cancer cells) could be in my chest wall in the pectoral muscle.  Oh, the unknown.  How terrible you can be.  I wish cancer cells were glow in the dark hot pink and we had a special machine invented to see them (and no, a PET scanner isn’t good enough as a tiny cellular level… plus, I think it glows green).  Someone invent that, please.  Or an anti-cancer pill.  That would be fine too.

Each radiation blast will be about ten minutes.  For 28 days.  Which will be about 5.5 weeks.  The hard part is that I have to keep my arm over my head for blasting.  Readers may remember from my MRI that this means: numb tingling arm.  Bring on the color-me-in count down calendar!  And as Sean says, time to work out and stretch ol’ righty in preparation for it all (all those lymphodema prevention stretches I never did are needed again).

This also means I will be retiring again.  I made it through one difficult month of work (ironically, that month being Breast Cancer Awareness month), with sun blisters and exhaustion, bringing me one awful day to wanting to quit then and there and recovering the next day.  I have to go in 5 days a week and can’t quite get my schedule to work out (too much rushing to appointments; too much sunscreen when I need to go in clean).  Thus, a leave of absence it a better option.  Also, no more ocean, hot tubs, pools until I’m done with radiation.  Bring back the books, the Redbox movies, the Kardashians and evening walks with the pup!

Amazing movie, especially the part on “Mia.”  (The Trailer?  Not as great.)  Watch it!  5+ cancer stories.  Sad, yes, but it’s what I’m dealing with and perhaps someone you know has dealt with.

On a side note, it was an interesting study in working with tourists while going through treatment.  I never said anything about cancer or treatment to guests on the boats but I obviously had a handkerchief and hat on; people could tell.  Most people either didn’t notice, ignored it or just minded their tongues, as is expected.  But every now and then I would get someone–almost always a woman–who would just blurt out, “so, how’s chemo going?”  One woman had her own health battles and had been in and out of the hospital a lot recently.  Another woman had been a cancer caretaker for a friend; she told me I looked great and had an amazing level of energy.  I liked these people who weren’t afraid to bring it up and ask.  One can only hide a bald head so well.

And work may have been exhausting and physically not a good choice (the sun can be brutal) but mentally it felt great to be back at it, to feel forward momentum in my life with earning money and being productive and of use.  I like to work; I like to have a job, a place to go and something to do.

The next two months will be filled with a lot of holidays and radiation treatment; probably a little bit of frustration and boredom and also some increasing energy and decreasing sun sensitivity.  Pretty soon it will be 2013 (so long as we make it through the apocalypse and all) and I hope to be done with most of treatment, back to work for the remainder of whale season, and on to planning a wedding!

Wide Awake

Cause she’s just awesome…

Ahhhhhhhhhh

You can take that as a satisfying sigh or a scream of frustration, it works both ways!

Sometimes I wonder if I am supposed to tell you that everything is OK, cancer aint that bad, chemo’s really OK.

But it’s not, it’s just not.

Yes, I’m getting through it.  I’m frustrated with it every day but every day I get to check off another day of “treatment” I made it through.  I am staring as hard as I can ahead to October 15th; I just need to get there.  That will be the last dose of Taxol and then maybe I will get a change of pace (and hair back!).  The rut of chemo is a long and deep rut.  It’s exhausting experiencing something that is anybody’s guess; what will my side effects be?  When will it go away?  Why do I feel like I have heartburn all the time?  What new drugs will I get to take to counteract new side effects?

It is so hard for me to “take it one day at a time.”  I’m a planner and a doer.  I want Sean and I to be able to think about and plan for our future.  Should we be saving money right now to get married?  To buy a house?  Should I be looking for a job that is better for my health and has better hours?  A job in an area where we can afford a house?  Should we move?  How about a job that can best utilize my skills or allow me to pursue my passions further?  Or do we just stay exactly where we are because it’s working for us for now?

What I’m supposed to do is “focus on getting better.”  And remember that there is no future for me if I don’t get through treatment and get better.  The problem is that treatment is giving me all this “free-time” to think about a future but not quite a perfect guarantee that I will get to have one.  Maybe I should go back to school?  A masters?  In what?  Marine policy?  Conservation?  Go back to research?

And then it often comes back to: health insurance.  We can’t go anywhere if I don’t have health insurance.  Medical bills without insurance are astronomical.

This is when I realize I’ve gotten ahead of myself and I wish my brain would just shut up and turn off.  I watch a lot of Hoarders and Law & Order to stay distracted (and swimming and dog park visits and hiking and walks and movies and reading).  Treatment is exhausting; I want life beyond it.  I don’t want it to dominate my life and I’m having a hard time letting it do that.  I’m supposed to focus on my health right now but it is such a foreign concept to me.  Eating right and exercise, everything in moderation was all I ever had to think about; now it’s chemo this and cancer that and radiation, hormone therapy, etc.  It’s too much of will this food do this to me and is this food the cure all?  Will this vitamin make cancer never come back?  The only-health thinking can quickly and easily oscillate into over-thinking and nitpicking every food and chemical I could ever encounter.  Ugh, it’s exhausting.  There goes that brain again.  Shhhh, brain, shhhh.

I just met with my oncologist today.  Things always change, from visit to visit and from person to person.  It seems the treatment plan for now is:

*Finish Taxol chemo on 10/15

*Begin Herceptin only chemo on 10/22 and continue for every three weeks until August 2013

*Begin 4-6 weeks of radiation sometime around November 1st

*Begin 5 years of hormone therapy (daily pill) after radiation

DOES IT EVER END?

I was under the impression that radiation and hormone therapy would start sooner but it’s pushed back to give me recovery time for each treatment/drug to be more effective.  When will I learn patience?  It’s become ridiculous how often I try to hurry things along and get through treatment to get to the other side of it all and then just be derailed or slowed down again.  Is this one of those big life lessons I’m supposed to learn?

Treatment is such a long process.  I’m petrified of getting so stuck in it, so consumed by it that I forget how to do anything else, how to live a life beyond cancer.  It’s a catch 22: focus wholly on treatment but don’t forget about living a “normal” life.  Plus, add to it all the natural worries of finances and health insurance.

And then tell the brain to just shut the hell up, turn on Hoarders and take a nap.  Oh, do you feel the cycle?!

On the work front, it has been difficult going back.  Snorkel trips wipe me out and sunburn me but I’m hoping Dolphin Watches will be less taxing (shorter day, no worry over non-swimmers trying to snorkel, no kayaking, smaller boat sometimes, etc).  I picked a very physical job and I’m not exactly in a position of job- or career-change.  I’m trying to take it little by little and focus on getting to October 15 with health insurance in tact (I read our company policies a lot, so far so good) and then crossing my fingers that my sun sensitivity and exhaustion will decrease and even out after that.

“As we do at such times I turned on my automatic pilot and went through the motions of normalcy, so that I could concentrate all my powers on surviving the near-mortal wound inside.”  ~Sonia Johnson

My brain has also been flooding me with lots of memories lately, all good ones, of home and the lake and friends and family and college and travels.  It has reminded me that my life has been full and busy… and that maybe it’s OK to slow down for a few months while I tackle this shit (this argument isn’t as strong as I’d like since I still cycle back to restlessness!).  It’s also reminding me that I miss home and family and that I really need a vacation.  Before this diagnosis, I had hoped that Sean and I might get back to the mainland over the summer or fall–I had even hoped for two trips.  Since that never happened, I’m experiencing strong island fever (it’s what happens when you don’t get to go to Target Stores for over a year, eat In-N-Out or Dunkin’ Donuts, or shop in a Trader Joe’s or Victoria’s Secret; also, not seeing topography different than that of the Pacific Islands).  Yeah, that’s right, I complained about paradise.  Home is a powerful place and we all need to go back to it every now and then (or at least take a damn vacation to somewhere other than where we live).

One note, “chemo brain” is real and hard to explain but here’s a good example of my mental fuzziness: once, I looked at my watch when I wanted to know my car’s speed instead of looking at the gauges.  I also cleaned the bathroom with Shout before remembering (by reading the bottle) that it’s for cleaning clothing stains.  Awesome.  Try getting through a day with those things on your mind.  What’s a good brain food?  I’m gonna need some brain rebuilding after Taxol.

Just keep swimming, just keep swimming… it’s so hard to keep progress in the forefront of my mind but I’m trying.  October 15.