The Waiting

Seriously?

The Tom Petty song was on the radio this morning, pre-scan, and I caught myself thinking about how much worse my anxiety levels would be post-scan.  If I am able to tune out what is taking place during the scan, I am able to just focus inwards and pretend it's not real.  I never had cancer, don't have cancer, this isn't me, not really happening.

Afterwards, upon further reflection, it's more difficult to convince myself that I'm not living my own life.  So I treat myself - offer congratulations that I have moved through the motions of yet another scary day.  Dan says we're one day closer.  Closer to what?  I don't know.  An answer?  Feeling relief?  The future?

The problem with getting closer to the future, is all of the uncertainty that lies just beyond tomorrow.  I know I must sound like a broken record, but it's the not-knowing that really does me in.  I can handle bad news, tough situations, if only I have the time to figure out how.  Part of me really misses sitting on my living room couch with my curriculum books spread out all around the computer, writing up all of my plans for the week ahead.  I get to control every single day in small compartments of 30-45 minutes each.  It's glorious.  And even though every day does not go as planned (usually because we can't accomplish every single thing I set out to do), there are always goals to meet, places to visit that I've planned out in advance.

I don't mind a pre-announced assembly or a fire drill, even though they interrupt our instructional time, because I have seen the future of these activities and they are familiar to me.  I like familiar, a well-loved routine.  I can curl up with the final Harry Potter book for the 6th time and read it like the first (mostly because there are too many details to keep track of).  In fact, that's the most comforting distraction when I am feeling pushed way out onto the ledge of unfamiliarity, into a lake of uncertainty - with nothing to hold onto. 

post-scan pizza: nori, daikon radish, avocado, wasabi and pickled ginger

I am a good swimmer - my mother, the former lifeguard, taught me well.  But steady breathing is kind of essential.  Without it, wipeout.

As we wait for the results of today's scan, I am both watching an old Harry Potter movie and reading the final novel - with excitement for the final movie.  It's the best alternate universe where I know what is coming around every bend, and where I can fantasize about everything being under magical control.


PS.  It's official:  according to my cardiologist today, I do have inappropriate sinus tachycardia.  Inappropriate, alright.  Cause: unknown (his hypothesis is that it's just my heart's reaction to the stress of treatment).  Continue taking beta blockers to improve status.

xxoo

Monday, Tuesday, Scanday

"just think lovely, wonderful thoughts, and up you'll go..."

It is time for another CT today.  I am squeezing it in between a visit to the cardiologist and the acupuncturist.  I have the typical scanxiety mixed in with some added doom since it has only been a month since my last scan (in the ER). 

Not much to say.  Will be happier when it's over.

xxoo

More Mochi, Please

a mochi sampler - custom created by us on the big island

I am hooked.  The mochi we had in Hawai'i was really really tasty.  For those of you who are (sadly) unfamiliar with Asian delicacies, mochi is this gummy dessert that can resemble playdoh (if it's purple sweet potato, or ube, flavored) or a hunk of sticky rice.  You can buy it all over the place in Hawai'i: supermarkets, farmer's markets, even a convenient store in the middle of nowhere has fresh made vanilla mochi. 

Once we returned (and realized we had only a stale hunk of it remaining - ew), I started to search for places we could find it around here.  Living in a fairly diverse, largely international city, I figured it should've been an easy task.  Not so much.  According to what others have Yelped, I have to go to some random bakeries in Chinatown and ask the ladies behind the counter if they are hiding any mochi in the back.  Hmm.

However, I did stumble upon a mochi ice cream review by some locals who are systematically trying and writing about each and every Trader Joe's product.  It received a 9.5 out of 10, which sounded good enough to me.  I bought two flavors (mango and chocolate) to try out for dessert tonight and they were a hit.  It's a little ball of ice cream wrapped in mochi (similar to doughy bean cake).  YUM!  Now I am covered in whatever powder they roll them in so they don't stick to everything.

In other news, I spoke to Dr. Henry this evening to investigate further into what results we are still waiting for.  Basically we are trying to rule out infection so that if this stubborn infiltraitor (new word alert!) is just inflammation, it can be treated properly.  However, he still feels as though the tachycardia is a mystery.  I am seeing my cardiologist next week and will ask yet more questions.  Furthermore, Dr. Henry wants to scan me again to get a picture of what my lung is up to now, a month after the infiltrate was discovered.  So don't put away your positive energy just yet, folks, when I said meet me back here in 3 months, what I meant to say was:  Don't forget to check the blog daily to see when I might be having another scan. 

I'll be honest, I was actually hoping he would do a CT/PET combo (just to put all of my fears to rest), but no dice.  He doesn't think insurance will go for it so soon and he doesn't think it's necessary (too much radiation, blah blah blah).  I would really appreciate a daily scanner.  Like those clothes-fitter-scanners at the King of Prussia Mall?  You go into the booth, some weird rays sense your body when you stand on the x's and then, instead of a list of the sizes you'll be in every designer label, you get a print-out saying either "cancer-free" or "ALERT, ALERT, THIS IS ALL SYSTEMS ALERT."  At least this way, nothing sneaks up on you or gets to stage IV before you've found the dastardly creeps and notified them they better come out with their hands UP and in full view.

I am enjoying another FB fast, although I do like to know about really important goings-on with people I care about (so if something's happenin, shoot me a msg, k?).  The past two days I have spent a disproportionate (and ridiculous) amount of time trying to design a button for my blog.  It was successful and I now have a fancy little image (of me and my blog title) that you can click on to link you directly to my blog.  Unfortunately, I have only been able to post this on my blog.  Which means that you can now get from my blog to my blog.  I'm workin on it.  I was not born to be a web designer, that's fo sho.

xxoo

PS. But seriously, isn't the button cute?

Just a Visitor in Paradise/Return to Reality

 Hanauma Bay

Holy Guacamole (as Judah would say).  Hawaii is unreal.  Truly a beautiful place every where you look.  We enjoyed our 10 days after receiving the "negative" news from the bronchoscopy.  I'm still not convinced about the results, but we'll get to that later.

getting (temporarily) inked

The past 10 days was the best distraction I could've hoped for.  Though the trip was long, we arrived in the afternoon in time to see the first Oahu sunset: a sky full of pink clouds and water stretching out as far as the eye can see. 

day 3, breakfast #12

Our stay there included a drive around the entire island, stopping for some fresh seafood and snorkeling at Three Tables; a giant rainbow, Pearl Harbor, Paradise Cove luau (and whew did we pay for that one!), pool swimming, Hanauma Bay, Hula Grill, lava flows (YUM), fresh mochi, furikake eggs for breakfast, and even an evening at House Without a Key, all the while enjoying our complimentary suites (THANKS, SHUTTERFLY!) and breakfasts at the Embassy Suites Waikiki Beach Walk.

upon the uss bowfin

riding the ferry out to the arizona memorial

see?  PINK!

Then it was onto the lava rocks and mountain goats on the Big Island of Hawai'i, where we stayed in a fabulous (yet affordable) townhouse in the Waikoloa Colony Villas (thank you, craigslist!).  The pinnacle of our trip (and the whole reason for my mom entering the contest to begin with) was the wedding of our family friend at an amazing hotel just a few minutes' drive from our rental. 

plate #2: not on the diet

The rehearsal dinner was crazy amounts of fresh seafood.  I ate WAY too much (none of it on the crazy sexy diet, but you gotta live it up on vacation), and still wished I could've fit just one more shrimp in.  The wedding (at sunset the next night) was just beautiful and attended by some very happy family and friends (thanks, guys - we really had a wonderful time).  Bride was just lovely, the groom adorable, the evening unforgettable.  Even Judah had a great time as the ring bearer...

serious business

wearing welcome leis

let's look over a cliff.

We spent one day on the big island driving to Hilo, a town on the green side of the island, and exploring botanical gardens, waterfalls, slightly terrifying albeit stunning lookouts, tasting yummy smoothies, and gazing at the lush farmland and animals all along the way. 

at the bottom of the botanical gardens.  sigh.

Another day, we visited the nearby Hilton, host of Dolphin Quest, where they charge a hefty chunk of change to get into the water with some sweet nai'a.  We thought it was more worth our money to eat lunch at the grill overlooking the lagoon so we could watch other people touch the dolphins for free (especially since Dan and I did it already on our honeymoon in Mexico). 

see? on the map? that's where we are.

One morning, we woke up "early" and got out of the house before 8 am, to snag a coveted parking spot at the Mauna Kea public beach, where we'd heard we would be able to swim with sea turtles - as well as calm snorkeling waters.  BINGO!  We saw one green sea turtle up close and personal and 3 more sunning themselves on the rocks at low tide.  Dan and my dad had more success seeing lots of fish swimming amongst the reef than I did, mostly because my breathing problems make it difficult for me to stay out for too long.  Plus, I don't like getting pushed into the reef by the waves (call me crazy), so I don't like to get too close..  The men paid for their snorkeling jackpot - Dan did get pushed (and scraped) into the reef and my dad fractured his toe walking on the rocks (to see the turtles).  Luckily, everyone made it home in one piece.

ouch! (note: NOT MY LEG - I may be ill, but I can keep up better than this)

The best part (for me) was getting to enjoy some quality time with our friends at the pool and on the Hapuna Beach (perfect sand, perfect chairs, perfect pool, perfect ocean water - though NOT advisable for snorkeling... more on that story also later).  We bought some cheap beach toys and gave Judah a few afternoons of vacation from our vacation = bliss for all.  Ice cream, blended drinks (though I quickly discovered that even the tiniest bit of grownup juice makes my heart race), lunch by the pool, it was the real deal. 

pool + food = good to go

We all cried (well, okay, it was probably just me and my mom) on the last afternoon as we sat sandwiched between the pool and the beach, lamenting having to leave such a state of nirvana and return to our stress-filled lives.  I'm still wondering now, why we couldn't just move there and live the rest of our days in the land of partly sunny, occasional times of clouds, high of 84, low of 71 every single day?
 
I did some minor investigating into teaching there, only to discover that a)unions there are taking a pay cut and b)rural Hawaiian culture and public education are often butting heads, not unlike problems we face in our rural and inner city districts.  It's not all exactly peaches and cream there.  And the cost of living is intense.  By golly, the Whole Foods we found in Honolulu (yes, we had to get snacks somewhere!) was even pricier than ours at home.  The only things cheaper there were pinapple (79 cents/lb) and octopus salad.

Still, for 10 days, the breathtaking scenery and new language (can you say humuhumunukunukuapua'a? I can!!) were the ideal break from all of the worry and anxiety that filled the weeks leading up to our departure.  Everyone was sensitive to my physical limitations and I was wheeled, shuttled, and even golf-carted to wherever I needed to be, so as not to raise my heart rate too much.  No need to encourage the unexplained tachycardia...

this is the "local" stuff in the Honolulu WF

And I did get an email from Dr. Henry in the middle of the trip, reiterating that the results thus far still continue to be "negativo" for everything.  However, the slow-growing organisms (infection?) can take up to six weeks to reveal themselves;  we still have a bit of waiting to do for the final results.  And since I cannot be treated (with meds) until we know for certain what isn't in my lungs, I'm just trying to find ways to cope with feeling like crud for the next month.


I have my own theories about what's going on in my body, but I can't say with certainty if they're gut instincts or just visceral, all-encompassing fears.  I suppose we'll have to stay tuned for the next round of results - this is like scanxiety on steriods (oh wait, I've done that already... ha ha ha ha ha.  that's an inside joke for all of you fellow PMLBCers/rchop or epoch-r-ers).

In any case, I hope this gives you a good idea of what our trip was like.  We thank you so much for voting on Shutterfly (I still can't believe these things are actually for real) and will be happy to return the favor...  Also, if you know of any contests that can get us to France, I'd really like to can the diet on some fresh croissants and beignets...

xxoo

(post-breakfast binge) family portrait, waikiki

see?  we really did find the whole foods.

humuhumunukunukuapua'a aka reef triggerfish

Exhale

Doesn't it look lover-ly?

I tried to pick one letter of the alphabet to help me focus on, but I just couldn't do it.  I'll blame my jumpy mind on the leftover meds from yesterday's bronchoscopy. 

Anyway, the preliminary results are in (and Dr. Henry called at 8 on the dot to share them).  So far, the microbiology stains are negative for cancerous cell growth and infection.  He felt confident enough to use the term "continued remission" and did not sound concerned at all by the fact that these results were just prelims.  Hallelujah and Thank You Very Much.

This begs the question, what IS wrong with me?  I mean, what's causing the shortness of breath, fatigue, lightheadedness, etc.?  He says we will give the samples a few more days to cook, and check back on Tuesday for any signs of infection.  If they remain negative, I will probably have to go on the pukey P for a while to reduce the inflammation.  I promise I won't complain (a lot).  While it destroys my stomach and makes me crabby, I much prefer it to any number of alternatives.  Regardless, Hawaii does have pharmacies and they even accept US currency, or so I'm told.  We can handle it from the sandy beach.  Gee, now that I think of it, I hope AT&T has good coverage on the islands...

In any case, we are now free to hula, mai-tai and pina colada out the wazoo.  Mahalo to all of you for your positive energy, hopes and prayers (and of course, for your Shutterfly votes back in March - can you believe this really happens??).  This has been Scanxiety:  The Extended and Melodramatic Version.  Meet me back here in 3 months and we'll do it all over again. 


Aloha!

xxoo

Laura

When you or someone you love hears the word 'cancer', the air is sucked out of the room. Inside your body a door closes, you can hear it, physically feel it. But Laura took that door and opened it. She refused to be intimidated or bullied or destroyed and she wanted to give others the strength to refuse, as well. Fredrick Nietsche said 'If you gaze into the abyss, the abyss gazes also into you.' Cancer is the abyss. What did it see when it gazed into Laura Ziskin? It must have been terrified. Scared shitless, really, by her bravery, courage, utter determination to never blink, never run. Now we have to do the same in her honor. Open the door, look at cancer for the thief it is, and refuse to let it steal any other life, any love. In her name it's the least we can do.
Tribute by Janet Champ (on the SU2C website)

Petri Dish

Tonight, my fate lies in a small, round, plastic plate of goo.  I had my bronchoscopy this morning, of course, not without some drama for good measure.

I was/have been for the past week beyond anxious.  Finally, this morning had arrived and it was showtime.  My mom and I were on the road by 6:30 am (me, unmedicated, in anticipation of the sedation to come).  Unfortunately, that sedation couldn't come quickly enough.  

I registered at admissions and went up to the familiar waiting room of the radiology department because, you guessed it, this procedure is done through IR (interventional radiology), just like almost every other diagnostic procedure I've had done in the past year.  

In a preventative attempt to keep calm, I had created a playlist on my phone last night to get me through the initial moments while I waited for an IV to be placed in my arm and for all of the consent forms to be presented for signature.  Sadly, the playlist wasn't quite cutting it when the first nurse to try the IV blew my vein.  Nice.  The second nurse (who had been known to stab me unsuccessfully in the chest during port access in the past) managed to get a line in closer to my wrist after all of the spilled blood was cleaned up.

Then, obviously, there was the humiliating pregnancy test (standard procedure even if the only possible way I could be with child at this point would be via immaculate conception).  Thank goodness I failed.  But I did succeed in providing a urine sample without spilling any pee on myself, my ridiculously unsnappable gown or the toilet seat (still wet with the morning's blue disinfectant).  Aaah.  The little joys in the life of a perpetual patient.

Just one more thing before the procedure could begin:  2 very painful shots in my right arm (all venipuncture must be done on the right arm due to the clot I had on my left side last summer).  SOB those things hurt.  Shoulder is still sore now.  This seems quite out of order, but the first one was a drug to dry up secretions (so there's no saliva in the way while they're putting a scope down your throat) and the second one was a pain killer.  Couldn't they have reversed the order?  A little compassion, people?  Would it kill you to use some freezing spray??  Jeez.

So, there I am with tears streaming down my cheeks, off and on for the next few minutes.  Instead of being upbeat and distracting (as other nurses have been known to do), they went about their business, only one stopping to pass me some cardboard tissues, apologizing that she had to see me back so soon.  Awesome.

Eventually, I made it into the OR and before I knew it, I awoke in time to get a chest xray (to be sure my lung hadn't collapsed during the scope) and to be wheeled  back into the IR prep/recovery room.

After a few hours, they agreed to give me water (something about my gag reflex not being able to work properly since my nose and throat were numbed for the scope, blah blah blah).  And delicious zesta crackers - 2 whole 2 packs.  I was ready to go.

Still quite woozy, we made our way back home, stopping at both yogorino as well as a water ice place to get "lunch".  

And now, I'm ready for bed.  Just a small step up from the emotional torture I was feeling a few hours ago, ready for the rest of my sleeping aid to help the time pass faster.  Because there is nothing I can do to make this outcome any different.  I can hope it's a good one, But I'm just waiting on those stinkin cells in the petri dish in the pathology lab of Pennsylvania Hospital.  C'mon, dudes.  Behave.

xxoo