Musings from the Middle of the Night

Sleep is a funny thing.  I can doze off mid-sentence in the middle of the day, but some nights, all cuddled under fuzzy blankets and puppies, I just stare at the dark ceiling.  What better time to blog?

Here are a few things I've learned this week.

1.  The nicer you are to everyone, the better your life is.  (just call me Captain Obvious).  Spending so much time in the hospital has really brought this front and center.  The nurses and doctors deal with sad people all day long.  Its pretty easy to make them laugh, or smile by giving a small compliment, or just tell them you appreciate them.  The way they light up when you do that makes you light up, too.  (Hey Dad, I guess you really weren't just flirting with those nurses all those years - you were actually on to something!!  Thanks for teaching me how to handle this journey with laughter and kindness.  I miss you!) 

2.  When eyelashes fall out, they don't fall straight down.  They ALWAYS fall into your eyeball.  Every time. 

3.  There's a hierarchy for military medical care.  Active Duty in Uniform are at the top of the heap.  Then Active Duty not in uniform, then dependents, then retirees.  Being in a higher category gets you appointments faster, cuts down on the line at the pharmacy, and sometimes improves the way you're generally treated.  This week, I discovered a new category - a Platinum Executive Level, so to speak.  Active Duty in Uniform and Bald.  I'm freaking royalty now. 

4.  Women in general are amazing.  Complete strangers on the street tell me I look beautiful.  Female employees and neighbors at the campground stop to ask how I'm feeling, every single day.  The other day, another bald woman in the grocery store put her arm around me and asked how I was doing (we then discussed which flavor of herbal tea best disguises the ever present chemo-funk taste.)  There's even gender bias from the dogs.  Sunday (female) is my shadow, my snuggler, my constant companion - she runs to the bathroom with me, curls up at my head when I'm napping, and is just generally nurturing.  Finn (male) runs around squeaking his toy and licking his nether-regions.  

5.  Nose hairs actually serve a purpose (other than to tell you when its in the single-digits during a New England Winter).  They catch snot.  Seriously.  Now that I don't have nose hairs, my nose runs ALL THE TIME.  Oh, and sometimes it bleeds, free-flow, without any little nose hairs to stop it.  (Which was amazing fun in the checkout line of the grocery store the other day ...... "clean up on aisle four!!!")

6.  My timing of this cancer thing was impeccable.  If I was healthy right now, I'd be spending all of my time and money on flying around the country to protest marches and volunteering with the ACLU, HRC, Innocence Project, Planned Parenthood, etc., and probably getting disciplined by the Army for doing so.  So its good that there's something holding me back.  (Oh, but just you wait, world.)

That's it for now.  I'll leave you with this adorable picture of how I woke up from my nap yesterday.  

Snuggler in Chief, Sunday

GI JEN

And this is what you get when you let your husband have access to your Blog!

Look Ma - NO HAIR!!!!!

I asked for a "high and tight".  I got "Ranger School".  Guess you get what you pay for..... ☺

As usual, we had fun doing it.  And ..... outdoor living means there's no mess to clean up!!!  Bonus!

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Hair Watch, Day 3

There's this weird little milestone after starting chemo - when does my hair fall out?  Some people freak out about it, but I'm like "bring it on already!!" .... because every milestone gets me closer to declaring victory in this war (and, um, I'm gonna save a boatload on shampoo and razors!!)

Science says it should happen between week 2 and week 3 A.C.  (If you're curious about the why, there's a good explanation here).  

Thursday, I woke up and my scalp was on fire.  Like someone had taken a cheese grater and rubbed it all over my head while I was sleeping.  Then the itching started.  I looked like a dog with fleas.  Friday was the magical 2-week-A.C. mark, so my scalp was right on schedule.  

I itched and scratched my way through Friday (and another chemo infusion).  I stood in the shower staring at my shampoo-suds filled hands Friday night, expecting to see gobs of hair  ..... but nothing.  I studied my pillow Saturday morning and found a bunch of hair ...... but upon closer examination realized it was much longer than mine and white, which meant that either the dogs snuggled on my pillow or Doug had taken an older mistress with flowing white hair.  

Today, the fleas are worse and when I scratch, my hands come out with a pretty good amount of hair on them.  Once it starts coming out in clumps, I'll go for the G.I. Jane look, but I'm hanging on until then.

In other news, my friends are f**king awesome - look at my new scarf! I can't wait to wear it to the hospital next week!!!

 

  

Ginger! Ginger! Ginger!

Natural queasiness remedy?  Ginger.  Seriously, I'm hooked.  This stuff from GingerPeople is the best - low sugar, all natural and some varieties are organic.  It also kills the ever-present chemofunk taste in my mouth. Seriously - order some for the person in your life with motion sickness, morning sickness, chemo sickness, whatever.

Gratitude

Sure, that's the new buzzword, right?  Gratitude.  Everyone telling us we should be grateful, have more gratitude, wear t-shirts that remind us to be grateful ....  blah blah freaking blah.  

But stay with me for a minute.  Read this:

Indeed, this cuts to very heart of my definition of gratitude, which has two components. First, it’s an affirmation of goodness. We affirm that there are good things in the world, gifts and benefits we’ve received. This doesn’t mean that life is perfect; it doesn’t ignore complaints, burdens, and hassles. But when we look at life as a whole, gratitude encourages us to identify some amount of goodness in our life.

The second part of gratitude is figuring out where that goodness comes from. We recognize the sources of this goodness as being outside of ourselves. It didn’t stem from anything we necessarily did ourselves in which we might take pride. We can appreciate positive traits in ourselves, but I think true gratitude involves a humble dependence on others: We acknowledge that other people—or even higher powers, if you’re of a spiritual mindset—gave us many gifts, big and small, to help us achieve the goodness in our lives.

From "Why Gratitude is Good" by Dr. Robert Emmons, Dept of Psychology, UC Berkley.

Still there? (I promise I won't get all wonky on you ... hang in there)

Here's where I'm going with this.  The most overwhelming emotion I've experienced the past 2 months has been gratitude.  Pure, unadulterated, full-on, balls-to-the-wall gratitude.  I've known for at least the past ten years or so how damned lucky I am, but I don't think I really ever appreciated the full-tilt enormity of how lucky (charmed, blessed, gifted, whatevs) I really am.  Stare cancer in the face and it all becomes very very clear.  So, here's just a few of the things that I'm grateful for.

1.  Doug

Well this is kind of a no-brainer, right?  Everybody is thankful for their spouse (most of the time anyway).  But this is different.  From the day of the biopsy on, never for a second have I ever even had to think about not having his full support.  Never for a moment did I worry about whether he'd still love me if I didn't have boobs.  When the Army offered to move us to San Antonio (a city he previously vowed to NEVER live in), he forced me to accept it because it would be best for me and my health.  Of course he's taken care of me after the surgeries, and sat on long lines at the pharmacy to pick up my meds, and driven me around in horrible traffic so I can buy organic food, but that's not where my overwhelming gratitude lies.  It's the unwavering, unquestioned, full-tilt support. I simply cannot imagine going through this -- or any part of life -- without him.  

2.  Friends

Wow - you have all been amazing.  So many people checking on me, sending little text messages here and there, sending really thoughtful and useful packages.  And it didn't stop after the surgeries. I just got another text a few minutes ago asking how I was feeling today.  Knowing that you all are out there and thinking about me - I am just so grateful for all of you.  Check this out - last week a friend at Ft. Bragg emailed to tell me that she knew I was feeling lousy, so she was going to take off work early and go for a trail run for me.  A few hours later, she sent this picture and a description of her run.  Easiest run I've ever done!! :)

I am grateful for every single one of you.  I appreciate every single text, funny email, and facebook chat.  I am stronger every day because of you.

3.  The Army, Army Medicine, and Army Insurance

This is the trifecta of gratitude.  First of all, my bosses are letting me work from home, as much as I feel up to it. I can't imagine being as sick as I was after chemo and having to go to work anyway. I don't know how women who run their own businesses, or those who work hourly-jobs with no paid sick leave, or who work for unrelenting corporate monsters do it. I am so grateful to not have that stress, and I know I will heal faster because of it.  Second, the level of care I get from the Army doctors is just amazing. Because there's no money involved (i.e., they aren't worried about billing for every procedure or every "consult") they just do what's best for me and my health. The doctors are always available and so compassionate - they actually call me at home just to see how I'm doing. The third part is the insurance.  Being on Active Duty is as close to socialized medicine as you'll see in America.  I don't worry about whether anything is "covered". I don't need referrals.  There are no co-pays.  I get whatever the doctor says I need, without even thinking about how much it will cost, or whether we can afford it, or how long I have to wait for the insurance company to approve it. I know how rare this is, and I fully appreciate how goddamned lucky I am to be in this position. 

I might have cancer, but damnit, am I ever lucky.  

  

AC ("After Chemo") #1

AC ("After Chemotherapy") Days 1-5

That photo pretty much sums it up.  That's me under the grey blanket.  That's my over-protective guard-dog/care-taker who insists on having at least one paw touch me 24/7.  Neither of us moved much the first five days after the first chemo infusion.  I did manage to go for a few walks around the campground, but a slow little stroll would knock me out for another 2-hour drooly, sweaty slumber, so it was a wash.

But today, I'm feeling a little stronger.  I actually checked e-mail and made a few work phone calls.  Went for a walk.  Just in time for the next infusion on Friday.  

C Day One

Spent the last BC (before Chemo) day with my pack, hiking in the hills of South Texas, eating fantastic food (goat-cheese, walnut pesto, and honey-lemon glaze bruschetta anyone????), and enjoying one last Pale Ale up in Austin.  It was a fitting end to that chapter.  

Post-hike visit to ABGB (Austin Beer Garden Brewing), where $1 from every pint goes to dog rescue!

This morning was "C Zero Day" (which so far has been much less painful than Army Zero Day).  On the advice of a very wise woman who has conquered her own share of medical battles, I went for a run at o'dark thirty.  I certainly didn't set any PRs, but hell, I ran, so f**k you cancer!

O'Dark Thirty Run with my Best Buds .... I only got tangled in their leashes and ate pavement once!

My "C Bag" (thanks Kerri and Kate) was all packed with awesome stuff I've received from wonderful friends along this journey including a super-soft blanket, Tranquility natural oil, lots of natural lip balm, ginger-chew candies, and of course a big file of LexisNexis cases and my laptop for getting some goddamned work done while I"m strapped to this chair!  

Sunday took her post-run nap on my C bag.  I think I could almost fit her in there.....

  

Then it was off to the hospital (where they have free high-speed internet!!).  The nurses and docs here are all so wonderful.  We have our own little area with a chair for Doug, lots of plugs for computers, and a big window.  I guess if I'm going to be strapped to a chair for 4 hours, it might as well be comfortable.  

Life is Good.  'Nuff said.

Once they got me all hooked up, I settled right into work.  Hoping all those toxic drugs make my legal writing more forceful.  Watch out, government, I'm now on performance-enhancing drugs.  Fly that Jolly Roger!!  Arrrgh.

I'm actually working here, not blogging!

That's all for now.  No AC ("after-chemo") updates till tonight.  I just couldn't resist the temptation of free high-speed internet to upload some of these pics.  

Bring it.  

The "C word"

No, not cancer.  (Not the other C-word you're thinking of Meaghan Burnes.....).

Chemo.  Chemo is the C-word.  This may sound weird, but the whole "cancer" thing isn't that scary to me - it's more of a journey, an adventure, a learning experience.  Chemo, though ... that shit's a Walker that's got you cornered with only a stuffed teddy bear to defend yourself with.  (Sorry all you TWD non-fans .... I couldn't help it).

It took me a long time to agree to even do the recommended chemo.  After living the last 20 years of my life as a super-healthy, organic-eating, vegetable-growing, all-natural non-toxic almost-hippie, the idea of willingly dumping that many toxic chemicals into my body just didn't make sense.  (It still doesn't).  I read stuff.  I Googled everything.  I talked to doctors.  I read too many blogs.  I meditated (yes, really).  I drank wine (oh sure, you believe that one, but you question the meditation????). Whatever it took to make sense of it.  And in the end, there were no good answers.  The oncologists couldn't tell me "if you take these toxic chemicals, your cancer won't come back".  They also couldn't tell me "if you don't take these toxic chemicals, your cancer will come back."  So its all odds - a roll of the dice.

What I do know for sure is that the type of cancer I have is the type that comes back.  And when (if?) it comes back, its already Stage IV and a painful death sentence.  I also know that the chemo drugs will do a number on my heart, my veins, my brain, and the nerves in my feet and hands.  So, I may not ever again knock out 46 4000-footers in a single summer.  I may not ever again ride a 24-hour mountain bike race.  I may not ever argue that brilliant case in front of SCOTUS.  And for a little while on this journey, that meant to me that if I couldn't do all of that, then I didn't want to live.  If I can't mountain bike all day long; if I can't hike big huge mountains for days on end; if I can't run and do all the physical things the Army requires me to do .... well, then I'd rather just get cancer again and die.

But then I thought about the everyday things that make me happy.  Sitting outside the RV with Doug, talking about whatever legal theory has us in a tizzy that day.  Watching the pups get so much enjoyment out of chasing squirrels up a tree.  Talking to my mom on the phone, listening to her reminisce about silly things we did with my Dad. Watching the Red Sox win the World Series (c'mon, we're due!).  Sitting at an outdoor brewery in the sun, enjoying a good Pale Ale.  Making homemade bread and my Dad's marinara sauce and watching the friends I feed enjoy every bite of what I've made for them.  Scoring those little victories in my work - those that literally change a client's life and reinforce what we all know to be justice.  Those are the REAL things that make me smile; those are the things that bring me joy.  Mountains and singletrack are awesome, but its those little things every goddamned day that make me want to roll those dice and do whatever it takes to live another day (or a whole bunch of days).

Whew.  That was intense.  Did y'all pour yourselves another drink yet?  Go ahead, I'll wait ........

OK, about the chemo:

It'll be a 3-drug cocktail (I wonder if they use the term "cocktail" with everyone or just me to make it more appealing??).  6 total infusions, every 21 days for a total of 18 weeks.  (1) Taxotere; (2) Carboplatin; (3) Herceptin.  After the 18 weeks, I'll continue the Herceptin infusions every 21 days until I reach one year, (January 2018).  Then, there will be Tamoxifen for either 5 or 10 years (but that's just a pill, so we can easily depart on our Epic Road Trip to End All Road Trips!!)

You can read about all the awful side effects (and greed-driven pharmaceutical company crimes) at each of those links.  Personally, I don't want to dwell on that. You all know me - you know I'll do everything I can to stay healthy and ward off all that evil stuff, and if all else fails, I'll make Doug pour a beer through my IV port.  The hardest part will be not being able to travel or go out in public for the first 21 weeks while my body is struggling to survive with all that toxicity.  (Don't feel sorry for me going through this - direct your pity toward Doug and the pups for having to keep me entertained during 21 long weeks confined to the RV!)

To sum:  an old boss used to tell me to just "chop the wood in front of you".  In other words, don't worry about what's going to happen in 2 weeks or 2 years, just focus on that big ol' pile of stuff in front of you.  And in approximately 36 hours, the big old pile of stuff in front of me will be a bunch of poison injected directly into my jugular.  The big old pile of stuff in front of me is also trying to keep some level of fitness, ensuring my few remaining clients get the justice they deserve, and keeping my pack as happy as can be without the big mountains and singletrack and beer.  I'm up for this challenge.  Bring it.