Limbo

you know, limbo.

I met with Dr. L, the pulmonologist, today (I figure I will try to give out some anonymity whenever possible).  Although we waited for more than 45 minutes to see him, he was very patient and kind once we got into his office.  He looked at my recent scans (and showed them to us on the computer - I still think it's very cool how you can look at a moving cross section of your insides), listened to all that I had to say, and gave me a prescription for time.  He does not believe going on steroids is necessary or would even be helpful, as the side effects would probably outweigh the benefits.  He thinks that my symptoms are not even pulmonary, even though I feel like I'm breathing through cotton balls all the time. 

So it's back to the cardiologist I go.  In less than two weeks, I will repeat an echocardiogram to make sure there is no structural damage that could be causing my mystery symptoms.  In my mind, I'm already trying to decide which hospital will host me for my stem cell transplant (somewhere with clean air and very knowledgeable and kind medical staff).  While everyone wants to roll their eyes at me, I can't shake the feeling that it still seems inevitable.   

The bronchoscopy final results are in (thank you, Dr. L for sharing this information with me).  The good news:  everything's negative.  The bad news: everything's negative.  Not that I would enjoy harboring a fungal infection, but I would appreciate some answers.  It is so frustrating to visit, call and email doctor after doctor, only to be referred to a different doctor.  No explanations, no magic pills, no free lunch in this town, that's for durn sure.  I was complaining about this to my brother the other night on the phone, when he reminded me they call it "practicing" medicine for a reason.

I wish I were just conjuring these feelings up - I wish it was all caused by anxiety.  But I promised myself I would trust my body, I would listen to the aches and pains instead of ignoring them and deprioritizing myself. 

If it were only time that I needed, you'd think insurance would cover that.  After all, the cost of daily living is most definitely lower than the cost of chemo and radiation.  Alas, no.  I have to make a decision about work, and fast, as these summer days do not last forever.  I'm stuck here, not wanting to make a decision that could cost me a spot in my school, because maybe all I need is a few more months to heal.

If any of you faithful readers have a crystal ball you can lend me, I think I'd be really good at Divination...

xxoo

Unimpressive

not quite a green machine.

I finally spoke to both doctors (both Dr. H's) after dropping a copy of my scan off at Abington Hospital yesterday morning.  The impressions are the same:  they believe it is just persistent pneumonitis in my left lung.  According to the report, the infiltrate found a month ago is getting smaller (without treatment, obviously), which indicates it is most likely not a fungal or mycobacterial infection.  But without the final results from the bronchoscopy, Dr. Henry will not treat the inflammation with any meds (such as pukey p).  I have mixed feelings about this.

On the one hand, I am quite relieved.  I don't wanna take the pukey p.  I'd rather have inflammation than infection and most definitely would rather have pneumonitis than cancer.  FO SHO.

On the other hand, I would love to take a pill and feel better.  Yeah, that's not happening. 

When I spoke to Dr. Henry last night, I really enjoyed how he described me: as electric!  Whoo!  I can honestly say I've never been called electric before.  I am still smiling.  He believes I could power a small city with the energy created by all of my anxiety.  Dan's response:  a small city? 

And did I say I was doing a 30 day all green diet?  Oh, that must've been a typo.  I meant to say 3 day all green diet.  I got super hungry today and ate a handful of shredded wheat with almond milk.  I wasn't feeling any better, and I need immediacy.  So while I will still continue to eat all of the greens I bought in preparation for the green-ness to follow, I will probably not be looking like Elphaba come August (unless.... I regain my ability to breath normally and a Broadway casting agent comes looking for an understudy...). 

xxoo

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