Wednesday, July 27, 2011


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...


To Whom It May Concern

imagine me, hunched over and madly typing away
Dear Chemotherapy,

First off, let me say thank you for doing your job as Cancer Killer Extraordinaire.  I know it was not easy, but you blasted through those stubborn lymphocytes and succeeded in part I of last year's biathalon (although you managed to damage quite a few healthy cells in the process).  I appreciate the fact that I am still alive and that I continue to look back on my days with you as a memory.  Hopefully, someday the memory of the time we spent together will dim (kind of like labor pains) and I may even forget you altogether.  Highly unlikely, but not entirely impossible.  After all, you did sever quite a few memory cells.

I'm just wondering why I must continue to clean up after you almost a year after our last rendezvous.  Just today, I went to the dentist, only to find out that I have not one, not two but SIX cavities that need to be tended to.  Seriously??  SIX??  Thanks a bunch. 

I mean, is House real?  I don't even watch the show, but I'm thinking the writers need to start taking notes from me.  I am the mystery case with all of my symptoms:  tachycardia, shortness of breath, breast pains, weird circulation issues, chest pains, reflux, neuropathy, lightheadedness, fatigue...   I have some theories that involve you.  I'm not blaming you, per se, just more giving credit where credit is due.

What I'd really like to say is that September 30 is approaching: the anniversary of our sixth date.  And whether or not I am back to work on that Friday, I am warning you that I am coming to reclaim my life.  Me (and my army) can take it from here.

Thank you kindly,

Mia R. Blitstein

Friday, July 22, 2011

Complex Patient

soft serve with chocolate shell is the best.
So other than being called "electric" last week by Dr. Henry, my favorite word of this week is complex.  The doc in the ER yesterday chose that one for me and I'm loving it.  Obviously, he meant it in a nice way:  I would hate to be plain and simple.  However, it might not be the worst thing in the world to be just a smidge easier to medicate and fix me up. 

I started taking my beta blocker again upon our return from the Aloha State, hoping I would not react violently (remember the allergic week - prior to our vacation).  While it seemed to improve my very inappropriate sinus tach (without harming my already low blood pressure - as many beta blockers lower both simultaneously), it also left me with a strange side effect:  itching.  Most of you probably remember that was one of my symptoms last year and hence, it drives me batty.  In addition to being super annoying, it gives me extra anxiety.  As if I needed any help in that department.

I gave it a full week and decided it'd be better to switch to a different med.  My cardiologist and I chose another BB and I began taking in a few days ago.  The result was a major drop in my BP.  I called my primary care doc on Thursday am, asking for an inhaler of some sort to try to alleviate my inability to take in oxygen (as if you can even find any oxygen in the air out there - it might be easier to try to breathe on the moon).  They asked to see me and upon visiting the physician's assistant, found my BP to be 72/49 (or something to that effect).  I was to lie vertically until the escort arrived to wheel me across the street to the ER.  Fun times.

Now, of course, as soon as I got hooked up in room 513, all of my vitals started to improve (I'm thinking the industrial strength air conditioning had some say in the matter).  They x-rayed my chest and worked me up just to make sure there was no bigger reason for my feeling like crud.  The doc's description of all of the results:  beautiful.  Clear and beautiful.  Can't ask for a better ER visit than that.

We decided to abandon BB #2 and return to BB #1, but just 1/2 of the dose I was on before.  Also, I must hydrate like crazy and stay out of the heat.  In fact, I think I just may sleep in the living room tonight.  The downstairs a/c is much stronger than the one in our bedroom.  Our next house will have central air (can't the insurance company cover that? and a housekeeper?).

The more I go on feeling lightheaded and tired, the more scared I am about September.  I am not ready to make any concrete moves on the work front yet, as we still don't have the final results back from June's bronchoscopy.  If I end up being treated with pukey p (prednisone), I will definitely have energy to burn and may be able to breathe actual Earth air.  There are still too many unknowns to make a decision. 


PS.  One of the nurses asked me if I was a medical professional or just very educated.  I explained that what I am is a professional patient and also call me Dr. Google.  But I was very flattered to hear that I appear to be very knowledgeable.

Saturday, July 16, 2011


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...). 


Thursday, July 14, 2011

The Position

Cuter couch potato at the opposite end of the couch.
The far corner of the living room couch is my favorite spot.  It's got a good view of the TV, the neighbor's window, out the front door, and I'm pretty sure I've worn my rear end's imprint into the cushion by now.  You know by now that I like the familiar.  Sadly, this position is all too familiar at this point.  I am trying to distract myself from all of the not-calling my doctor is doing by watching Glee, Harry Potter and Friends on TiVo.

It's not really working, hence me writing here.

In other news, I must confess, I have started the 30 Day All Green Diet today.  I am sure I'm setting myself up to be the recipient of many rolled eyes and raised eyebrows.  Let me explain.

For the next 29 (woo hoo!) days, I will attempt to eat only green foods (ahem, from nature).  I can have as much as I want, any types, all day every day.  This includes all melons, most fruits and lots of leafy veggies.  Tonight, I ate spinach pasta (somehow allowed on the diet) with broccoli, evoo, and garlic (also permitted).  For dessert, cantaloupe.

So far, the only thing I want to eat that will have to wait is mochi.  I found a really good international supermarket today that had some good-looking sticky rice dough balls (in addition to lots of foods for the green diet).
Photo Booth is not an actual CT scanner. :(

I'm hoping to detox my system, re-balance my digestive tract and bring some (of my own) energy back into my life.  It's nice to focus my energy on something that does not involve willing the phone to ring.


Wednesday, July 13, 2011

The Waiting

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.


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.


Friday, July 8, 2011

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.


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

Wednesday, July 6, 2011

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...


(post-breakfast binge) family portrait, waikiki

see?  we really did find the whole foods.
humuhumunukunukuapua'a aka reef triggerfish