Wednesday, November 20, 2013

Update on Life, Tumors, Moose Mating Rituals, Airport Insanity, Chemo Sucks and Beacons of Light

Oh my, its been a year since I've written you (almost).  Wow.  Trust me when I tell you, I'm talking to you in my head all of the time and I have the best of intentions to write.

So much has been going and I think it has finally reach such a capacity that I  feel compelled to sit down and catch up with words on a page.  (I spent half an hour breaking in to an old filing cabinet on Tuesday night to dig out my collection of letter writing stationary if that helps put the word 'compelled' in context for you).

Quick Update on Life in General - It ain't bad.

The past year has been pretty amazing.  We moved into what we call "our forever home" on the side of a wooded mountaintop over looking the valley of Park City.  On Saturday, sixteen inches of snow fell.  In September there were moose mating in our back yard.  You can see the stars almost every night.

Emerson started a new school and can now spell her name, count to 16 and identify the entire alphabet.  I hate to brag (kind of) but to be honest, she works hard and she practices these things because she loves to learn.  She deserves the credit.  Her favorite toys this week are some of my left-over yarn and a blanket we break out when winter arrives - a child's imagination is truly boundless when given free reign to ramble wild.

I have started a new job within my company.  As a result of that and some other significant professional changes I am actually loving what I am doing.... (just process that, those of you who have known me for longer than five minutes).  I am re-learning how to play the piano and how to nap. (more on me later)

Hunter has grown his hair out long again and has taken up occasional running.  In my humble opinion, mountain living looks damn good on him.  He lives and dies by ski season and the snowfall totals in Big and Little Cottonwood.  He has seen Phish seven times this year and is learning John Fahey's Christmas album on the guitar I gave him for for our 10th anniversary.

More About Me (and Squishy)!

For so long, I have truly felt as though I haven't had enough writing fodder to justify an entry here.  (Wait until you see the length of this one!)  I mean, there's really only so much you can say about moose mating, though trust me, I was so tempted.  However, there are a few things I'd love to send out to the masses.

Last May, after years of inexplicable knee pain, we discovered that I have a tumor in my knee.  Turns out, the tumor is the result of a condition called P.V.N.S. (I really can't ever remember what that stands for) PVNS occurs in 1 in 2 Million People.  It is a condition that causes chronic tumor growth in the lubricating fluids and tissues of your joints.  The tumors will eventually eat away the joint.  While you would think the ultimate solution here would be joint replacement, the tumors can actually come back and attach themselves to artificial joints as well.  SO.... your best option is to get a really phenomenal oncological orthopedic surgeon and hope that s/he is awesome enough to remove the tumor and then it's gone for many years or forever... Which is exactly what I did...  Because, I mean, less than 5% of these 1 in 2 million people who have this barrel of monkeys shows any signs of tumor regrowth at their 1 year MRI check.  Well fast forward to five months post op (Sept/Oct)- guess who is seriously working the hell out of these odds.  (And I, of course, live in a state with no lottery).  So my tumor is back, this one is actually larger than the first one and I have named it Squishy.  Why not?

So given Squishy's vehement perseverance and the fact that my leg is still recovering from the first surgery, I have started a three month round of chemotherapy in an effort to:

1) Keep the tumor from getting bigger between now and when my leg can handle another operation
2) Try to shrink the tumor so we have a better chance of removing 100% of it and preventing it's return
3) Kill. the. tumor.
4) Any combination of or variation on the above.

This "brand of chemo" is specifically targeted to patients with Leukemia.  It is a daily treatment that, in theory, can be sustained indefinitely.  This drug is traditionally well tolerated with minimal side effects.  I don't really have anything to compare it to but I can honestly say, Chemo. Sucks.

I started the treatments the week of Halloween.  The only way I know to effectively communicate my level of exhaustion to you is to tell you that I did not dress up, hand out candy or carve a pumpkin.  We did take Emerson trick-or-treating.  (and for what it's worth, we did carve a pumpkin sometime last week, it got smelly with a quickness but hey, pumpkins were carved, people)  Point being, so, so, so very tired.

At the start of week two, I had to make an impromptu trip to NC to kick off my new position at work.  One of the caveats with this medicine is that it causes you to retain everything to you put in your body.  The only way to combat that is to practically eliminate your sodium intake.  I'm eating less than 500 milligrams of sodium a day.  Stop what you are doing and go to your fridge or pantry.  Look at the sodium content of anything in there.  Weep with me.

The first thing I do when I get to North Carolina (besides drive past a Bo-Jangles, wailing, and immediately pick up a medium black dark roast from Cup-a-Joe - because coffee doesn't have sodium and God is still good) is head to my Grandmama's house for Sunday dinner.  God bless my Grandmother and her southern cooking.  That house smelled so damn good I practically melted standing in the threshold of the front door.  Sadly, her idea of low sodium cooking, along with every other Southern Grandmother worth her salt (ha. ha.), is to simply not add extra salt from the shaker to the vegetables that have been put up and cooked with country ham and cooked in chicken stock and butter (but Grandmama totally did skip the salt shaker, just for me).  I ate the salad greens and naked roast beef that she made just incase I couldn't eat her world famous chicken cordon bleu and was instead, fulfilled by catching up with family that I haven't seen in over a year.  There is always, always, a beacon of light near by when the darkness starts to settle.  The trick is having the will power to open your eyes.

I was able to spend one glorious night with one of my oldest and best and for several beautiful moments we felt like we were 22 years old, not 32 and the stress and responsibility that comes with that extra decade floated away like smoke drifting into oblivion from the front porch on an autumn night.  When she dropped me off at my hotel, she outfitted me with no-sodium oats, pumpkin butter, fruit, protein bars and all natural pumpkin macaroons (so I could cheat without really cheating) because this is what best friends do.  Again... that beautiful, shining light. So, armed with low-sodium love, I was left to engage the brand new dynamics of a ten-year seasoned career.

The more things change, the more they stay the same.  I think I have been back to the corporate office, where I cut my teeth (and contemplated a vein a time or two), twice in 5 years - it is always a bizarre mixture of gratitude to see familiar faces and the twitchiness that comes with visiting a place you have separated yourself from.  Much like going to a dysfunctional family reunion (I would imagine).

I walked in the front door to the office and was greeting by the warm, smiling face of our delightful, deeply southern, receptionist.  She glows with joy upon seeing me and exclaims "JULIE, GOOD MORNIN'!  I'M SO GLAD TO SEE YOU!!!  WHEN ARE YOU GOING TO HAVE ANOTHER BABY?!?!?!"
......   .....   .....  ......?


(*SIDE NOTE - I now live in the land of perpetual procreation.  Generally speaking, people in Utah are underwhelmed by your ability to reproduce and quite frankly, I suspect, are secretly hoping that you won't continue to add to our seemingly infinite sea of toddlers...I forget The South's deep desire to see their women happily married and producing rolely-poley offspring to continue on our treasured lineage)

So starts my day.  Within the first 2 hours of my prodigal return, I kid you not, I was asked if I was pregnant again yet or when I planned to be pregnant again no less than 7 times.  These people have never met the one magnificent child I do have.  Most of them probably don't even know her name.  I'm a little befuddled as to why that is the default question and not "Hey, how's Utah" or "So, excited about your new job?" of "How 'bout them Red Sox?".  I don't understand.  I finally found an empty office in which to hide as I started to fade from what I would soon learn was the beginning of a very unpleasant reaction to Chemotherapy.  As I was wilting, a friendly faced popped-in, took one look at me and said "are you okay, you don't look so good?'  I explained that I was feeling very tired to which she responded (you guessed it) "oh wow, are you pregnant?".


So at this point I, drag myself and my newly developed pregnancy complex to the break room where I reunite with all of the IT guys.  As I bid them farewell, fresh cup of coffee in hand, I hear them whispering "dude, how cool is it that she's still super hot?!?!".  Complex averted.  I love you, IT guys.

As the week progressed so did my exhaustion.  By Wednesday I was listening to a chorus of "wow, you look awful" and "what's the name of that cartoon dog with the humongous bags under his eyes?  You look like him".... (Hi Complex.  Back so soon?)

By Thursday morning my eyes were swelling, my skin was hurting and my feet were itching.  By the time I woke up on Friday to catch my flight, the fun was in full swing.  I looked like I had been stung by a bee and was covered in a full body rash.  You should google chemo rash.  Weep with me.

Given that it was 6:00 in the morning and my only means of transportation was the hotel shuttle, I consoled myself by deciding to travel in my pajamas and to buy some benedryl at the very first airport convenience store I could find.

I breezed through security with blessed efficiency (after all, when one is wearing pajamas there is much less to maneuver) and saw, the true american utopia gleaming in front of me... a huge store marked OVER THE COUNTER PHARMACY.  HALLELUJAH!

(Side note - you would think benedryl would be such a necessity that it would be passed out by flight attendants on airplanes along with peanuts.  People get twitchy when the travel, they get hives, they're surrounded by allergens (see peanuts) and recycled contaminated air.  There are children who need to be drugged, and adults who need to be drugged.  Benedryl can help with all of these things.  Guess what.  They don't sell benedryl in the airport.  I shit you not.)

So, it turns out, after much desperate searching the woman at the OVER THE COUNTER PHARMACY store had some topical benedryl-gel stuff which I bought out of sheer desperation, knowing that it would be no help so ever.  Before she agreed to sell it to me, however, she eyed my pitiful swollen, flaming, itchiness and made me swear to her that I would not drink the topical gel.  How's that for context?

I made my way to the gate and checked in for my flight.  The gate agent looked at me in horror and asked if I was okay, to which I responded, "You know, I could really use some benedryl... I'm having a mild reaction to some medication I'm taking.  Do you know where I can find some?"


Turns out the words "reaction to medication" are in the sacred text of TAA Officers under "Emergency Situation".  She, despite my extreme protestations, insisted on shoving me into a seat as far away from any human being as one can get in an airport and calling the airport police.... who called the airport medic team.... who called the Rex Hospital EMS.... who came flying down the jet way in an ambulance, lights, siren, the whole she-bang.  I was gently informed (from a safe distance) that I was going to miss my flight but that I would be re-booked somehow.  I gently responded in-kind by reminding her that all I wanted was a little, tiny, over the counter, benedryl capsule.  She looked at me with tremendous pity.  I resigned myself to the onslaught of uniforms.  Blood pressure, O2 Stats, temperature, death release form, etc. etc. The EMS medic finally opened his medicalcase and says ... wait for it... "Oh no, I only have one capsule left in here, I'm sorry but that will have to get you through (now that I won't be home for another 8 hours... thanks for that.  I make a mental note to re-nig on my promise to not drink the gel if things get too bad.)

I finally made it home 12 hours after my day began and drove straight to the acute care clinic where I was given steroids, PRESCRIPTION BENEDRYL (WOOT!) and thrush medication.  That's right, I forgot to mention that little gem.  Thrush!  Woot!

Over the course of the following week the rash subsided for the most part, the thrush seems to come and go and I've had a few other surprises not really appropriate for public consumption.  All in all, I'm half way through my third week and am grateful for each day that I seem to adjust a little more to my "new normal".  I've learned the hard way that caffeine and chemo don't mix.  Wine and chemo are SUCH A VERY BAD IDEA and not to make plans after 4:00 pm.

So I'm hoping Squishy is getting the message loud and clear and is feeling as uncomfortable as I am.  I'm trying to embrace modern medicine as a welcome necessity because I think that railing against it keeps it from doing what it needs to do.  I think a team mentality verses and adversarial mentality towards the chemo helps.  We do have the same goal, after all.  I'm forgiving myself for letting some things go and I'm learning to being gentle with myself emotionally, mentally and physically.  I'm trying to be better about asking for help when I need it.  I'm trying to take pride in the positive aspects of this new healthy lifestyle - like clear pee that doesn't smell like fresh roasted Sumatra.... what a novelty that is! (Beacon of light, baby!)

So that's the latest.  The reality is, I don't have cancer.  I know it could be be so much worse and is for so many.  This is livable.  It is a massive pain in the ass, it pisses me off, it is, at a minimum, extremely inconvenient and uncomfortable - but it is livable.

I will try to keep you posted on this bizarre road that I'm on so that you can either laugh or cry with me. I'm hoping we'll do some of both together.

Love and hugs and processed foods and cheesy, salty goodness to all!


Thursday, January 17, 2013

Waking up EXACTLY where I don't want to be - the perfect place at the perfect time - for Dylan, Jake, Ann Marie, their Families, Aurora and Newton P. D., et. al., infinity.

This morning I woke up at about 5:30 AM with time to kill in my LasVegas hotel room. 

I swore off of cable TV news and morning shows long ago, primarily in an effort to triage the influx of hysteria into my already overstimulated psyche.   As an alternative, I listen to an internet music provider or my hometown NPR Station, 2,200 miles and currently 3 time zones away.  Over my $34 dollar pair of poached eggs, english muffin and liter of coffee (that’s right, it was 34 dollars, I prefer my eggs poached and I’m going for the full liter with not a drop to spare- you read all of that right – Vegas.) the BBC so eloquently provided the soothing white noise that can only be provided by a British radio news anchor.
All of a sudden, the voice on the airwave was no longer British, she was American. The voice belonged to Nicole Hockley, the mother of Jake and Dylan Hockley of Newtown, CT and she was telling the story of her boys.  Jake is 8 years old and was a student of Sandy Hook Elementary.  He can't sleep at night because he keeps asking when the shooting is going to happen again and no one can really answer him.  His little brother Dylan was 6 years old before he was found shot to pieces, what was left of him was cradled lovingly in his teacher’s arms, surrounded by other children hidden in a school supply closet.

I know that was hard to read, I’m sorry.   It was hard to type.  It was even harder to stop the gut wrenching sobs that had me doubled over out of nowhere this morning as I was eating my breakfast, watching the Nevada sunrise over the mountains on the outskirts of Sin City.  Listening to Nicole, a primal surge of simple shared, human pain just wrenched me out of nowhere and I found myself sobbing with a level of emotion that I have not experienced in recent memory.  

As deeply as I felt the impact of what happened in that small town several weeks ago, as much as I thought I had talked through and processed my feelings and reactions and emotions, with friends, family and the rest of the nation, I was completely unprepared for this innate emotional response to hearing a mother tell the story of her two sons and their teacher, Anne Marie Murphy.

It’s possible that I would have had the same reaction in the sanctuary of my own home in Salt Lake City, (not-so-arguably the nation’s strongest advocate for unlimited access to unlimited weapon ownership).  It’s also possible that I would have had the same reaction on a business trip in, say, Chicago (I believe the Nation’s leader in gun related violence and homicide), which is where I was the Monday after the Newtown shooting.  I will forever remember sitting in my Chicago hotel room, breaking my self-imposed cable news ban, tuned in with rapt attention to CNN’s broadcast of the interfaith service held in Newtown.  I will never forget listening to the local Newtown Rabbi chant, hauntingly, beautifully in a language that I don't understand a song of mourning so poignant that it seemed to be a cry from God himself. But I wasn't home and I wasn't somewhere else - I was here, in Las Vegas listening to Nicole.

I pulled myself together, pushed aside my breakfast, put on my brand new logoed shirt, specifically designed for the SHOT Show, opted for the pencil eyeliner in lieu of liquid, given the circumstances, and went down 22 floors to face somewhere around 70 THOUSAND of America’s most enthusiastic weapons enthusiasts.    There is no possible way for me to convey to you in words the level of inner conflict and self-loathing that I was trying to process between those 22 floors.  When I came down an additional escalator and had a bird’s-eye-view of a sea of human beings being guided by cocktail waitresses holding huge bright orange signs in the shapes of rifle scopes and targets, only those unfortunates who have experienced the joy that is a panic attack will be able to somewhat relate.

BUT HERE’S THE THING!  I spent my day in a section of the show that is exclusively targeted  to active duty law enforcement and active duty military.  8 hours, not one comment on gun rights.  Not one mention of politics, speeches, reactions, NRA, President Obama, liberalism, conservatism, or the Second Amendment.  THOUSANDS of individuals; not a word. This, as the NRA is literally across the hall, simultaneously launching an epic, internationally covered, public relations response to President Obama’s call for weapons reform.  Not one peep. 

I outfitted hundreds patrolmen, squadrons, S.W.A.T, and Medics all day long with ballistics protection, soft body armor, hard body armor, tourniquet casings, and emergency response kits  with the hopes of keeping them alive and giving them better tools to help them keep their brothers alive.  Brothers….  Brothers…  There are Jake and Dylan again.   

I spent 30 minutes talking to two adorable twenty-something police officers from Aurora, CO about a piece of $50.00 gear that their departments couldn't afford to provide.  Without thinking, I jumped on the geography of Aurora, given its proximity to UT, before I realized what I was doing.  These guys did not want to talk about the fact that they were form Aurora.  They just needed better functioning gear.  They just wanted to do their jobs.  They just wanted to not be from Aurora.

In Julie’s dream world, the one where its totally cool for me to refer to myself in the 3rd person, I have a pet donkey and live in a 200 year old colonial home on the coast with an unlimited supply of Sumatra coffee, and farm acres of lavender, there are no guns and every decision that we make as human beings, states, and nations is motivated by the furthering peace and love.   Sadly, Hunter can't stand it when I refer to myself in the 3rd person, I don’t think donkeys like cold weather and we just bought a 5 year old house in Park City where the altitude doesn't even let you grow so much as an onion.  Guns exist and so does snow and new construction.  I understand and accept these things, and this is not meant to be my proposal to impose my brilliant liberal solution to this problem.  I don’t use this blog much lately, much to my chagrin, but its name is fortuitous.  This is where I ultimately go find myself – a safe place to wrestle with these Shades of Gray.  In my heart, I know I will never own a gun.  That is a conscious, well-thought out, highly discussed and considered decision that we have come to together as a family for a variety of legitimate reasons that apply to us as an individual unit.  Does that mean you shouldn't undergo the same analysis and be allowed come to a different conclusion?  No, not really – to a point…

I found myself about every hour or so throughout today drifting off with thoughts of Dylan.  And then a young man would walk up to me and ask me very politely to direct him towards a piece of equipment that will better his chances of staying alive while he devotes his energy, time and life to keeping the next six year old little boy and his teacher from ending up in pieces – to keeping all of us from ending up a 30 second sound bite in a never ending news cycle of decimated carnage.  And while I’m trying to be engaging and jovial and informative… while I’m slipping this young man from Aurora (who would rather be anyone than “that young man from Aurora”) a “sample” from the booth display that I know will give him better, quicker, more reliable access to the comparatively tiny little magazines in his standard issue Beretta, the NRA is across the hall arming anyone and everyone as fast as they possibly can with bigger guns and more ammo. 

I’m going to sleep tonight hoping that today, I advised someone in Military/Law Enforcement towards a piece of equipment strong or efficient enough to stand up against the pin that was pulled out of the grenade across the hall by the NRA.  We have, under the same roof, orchestrated heaven for the misunderstood loaners, riled up and teetering on the edge, looking for a deal to purchase via private transaction semi-automatic weapons and at the same time consolidated resources for the heroes who will stand in the line of fire while working to get that same weapon off of the street so that it doesn't do what it was designed to do - kill someone.  These guys shop gear, not because its cool but so they can realize their goal of seeing their son graduate from high school.  I have to imagine that a few of those guys were thinking about Dylan today too.  And Jake.  And Nicole.  And Anne Marie.  And next time.   

More Information on the Hockley Family’s outreach can be found here:  here:
I Promise to honor the 26 lives lost at Sandy Hook Elementary School.  
I Promise to do everything I can to encourage and support common sense solutions that make my community and our country safer from similar acts of violence.”