Passage of Time

we survived birthday #5

On this day, the eve of May 26, two years to the day from when I was informed of the grapefruit-sized mass in my chest, I have the day off.  Not because I called in sick, not because I was fired, but just by chance, I have the day (or what's left of it) to reflect and also busy myself with the errands and tasks I've been unable to get to all week (month?) long.

no joke.

It's been a busy May.  Judah turned 5, which is just nuts.  We registered him and oriented him for kindergarten.  We celebrated him (again and again - the gifts just keep on coming), and then we celebrated me for Mother's Day at the blissful Ocean City beach.  We got a new car (finally), went to Pittsburgh to celebrate my father-in-law's birthday.  I chaperoned Judah on his last pre-school field trip.  Finally, we are back in town until further notice and I'm just trying to breathe at a regular pace.

best mother's day ever

My hair is looking more normal, especially when it's not 100% humidity and 80 degrees outside.  Living in a temperate climate makes life so exciting, right?  And so it's strange to look in the mirror and begin to see myself again.  After two years of uncertainty, of baldness, of weight loss and weight gain, of fear and shock and grief and anger, sadness and pain, the clouds are starting to pass.  It's a peculiar feeling, that you can un-inhabit your body and then rejoin yourself after a time.

green machine

I'm back on a sugar-free kick and feeling okay.  The wet and wild weather does nasty things for my ever inflamed lungs, but I do think that the lack of refined sugar in my diet helps a little bit.  And if I can shed a couple of pounds in the process, well, there are worse things.  It's my little slice of control in this wacky world, being able to dictate what goes into my body.


Two years ago I was blind to the future.  When I think about myself on 5/26/2010, sitting in my doctor's office, hearing words I couldn't comprehend, I had no idea.  I just had no clue what was coming.  And now I feel so sad and pitiful for that very unknowing girl.  Sad and scared.  10 minutes before, I was just looking for some allergy meds to stop the itching.  Literally in an instant, all of our lives were changed.  The before and after are so starkly different and yet, it's still me here.




 *SIDENOTE:  Like my therapist says, there are still two things you never ask a woman: Are you pregnant?  or Are you [still] trying to get pregnant?  Both are completely off limits, thank you very much, no matter how close you may think you are to the woman.  Hard to believe that some people cannot grasp the concept of some information being private (even for ME).  "How are you doing?" will suffice.

I hope you'll join me as I continue to make an effort to stay present in this next chapter (year 3).  Enjoy moments as they are happening without projecting and predicting the future.  Tell people you love them and have dance parties in the kitchen.

Thanks for sticking with me..

these are for you

xxoo

Unremarkable

oncology is so fun.

Word of the day: unremarkable.

It's written all over my scan report, which I happened to pick up at my oncology check-up this afternoon.  Quite frankly, it was stunning and hard to believe that this bajillion dollar scan didn't pick up something fishy, like it had on each preceding scan (January 2012, September 2011, July 2011, June 2011, March 2011, January 2011).  Icing on the cake is that my WBC count has finally hit the 4 mark!

After the appointment today, my mom and I went through the report with a fine toothed comb, looking for possible details that Dr. Henry left out of the conversation.  Unable to find anything to get worked up about, we replayed his response to my asking him what he thought about me taking a trip to Tibet this fall.  It fell somewhere between are you out of your cotton pickin mind, lady? and I didn't give you all of those life saving toxins just so you could pick up some infection (I'm pretty sure he used the word worms).  So I took that as a no.  While I was kinda hoping I might get clearance, I also feel a bit relieved (for once) that it's a decision that's out of my hands.  Too stressful.

While the routine at the check-up is so familiar (check in, co-pay, height/weight, meds review, blood draw, wait in exam room..), this was the first time the only anxiety I felt was over what number I would be forced to read on the scale.  The scan was on April 19, and it's taken me since then to fully exhale.

*side note:  the radiologists saw an elevated SUV under my jaw, as apparently I was exhibiting a bit of stress, clenching the muscles in my jaw during the scan. shocking.

But now there's inhaling and exhaling all over town.  Unremarkable is my new favorite word.  Who'd have thought I'd ever want to be boring?

Air is Good.

So is breathing air.  Into your lungs.

It often takes a few days to recover from holding one's breath during the Waiting For Results period.  I am so thankful and happy to report that the news is all good.  All three doctors who were waiting to review the report called me either Thursday afternoon or Friday to give the good news (first the pulmonologist, next my radiation oncologist, and finally my hematologist/oncologist).

Report #1: the undefined spot on my lung in January is gone.  no official report but looks good.
Report #2: "I'm not an official scan reader, but it looks perfect to me."
Report #3: Excellent report, even the dead tissue has shrunken by more than 1 cm since the last scan in January.

I'll take it.

I won't have an actual exam until May 2 with my onc, but I had a deep sense of relief after speaking with Dr. Henry last night.  When I'm feeling short of breath, heart racing, and weird swallowing issues (which he theorized is due to the dead tissue retracting and pulling my esophagus), I must MUST remember that the most thorough scan I just had came with so-called perfect results. Obviously I'd rather not miss an important call, but being able to replay awesome news on a voicemail is priceless (got report #2 that way).

While awaiting the VIC (very important calls), I kept busy.  First, in the morning, I ran a whole bunch of errands with Judah in tow (he is MUCH recovered from the damned coxsackie business but not well enough to go back to school until Monday, we're hoping..).  Next, I went to a work meeting for a new job I'm starting next week (in addition to the early intervention services) working on a research study of kindergarten pre-reading skills. and FINALLY, to one of my all time happiest places:  Tierra Mia Organic Nail Spa.  Their products are either edible or completely non-toxic..

warmed organic coconut oil applied with a paintbrush...

exfoliating with coconut shavings...

columbian chocolate tasting menu while you're waiting for your  polish to dry

finished product!

Best way to spend an afternoon of waiting:  someone rubbing your feet and making you smell like Hawaii.

Pot O Gold

This is what it looks like when you choose mocha flavored barium for breakfast.

for the record, I couldn't finish this.  or the other one I was supposed to guzzle.

This is the freaky-deaky injection full of radioactive glucose.

yep, it's goin in ME!

Here's the injection!  This is the reason my mother was not allowed to join me for my barium breakdown. No exposure for innocent bystanders..

I love when the nurse needs gloves to handle the injection!

 This is what it looks like after you've gotten through 2 separate scans in a row (first the PET, then the CT).  It must involve a donut robot.  That is what you see:  my vanilla-lavender, appollonia, and indian cinnamon donuts being fried fresh.

This is what it looks like when I am waiting for my hotties while waiting for my scan results...

Aaah...

For all of you fellow Philadelphia scannees, I encourage you to reward yourselves with a Federal Donuts pot o gold at the end of your scan rainbow..

SCANS: By The Numbers

source

Since May 25, 2010, I have had...

6: PET Scans
5: visits to the ER (I think)
4: CT Scans (only one with barium)
3: Chest x-rays (one very very abnormal, one lovely)
2: PET/CT combos
1: spinal MRI (with contrast, ew)
1: CT guided biopsy ("that's the money shot!" NOT)

I wish I could say it gets easier.  Nope.  If anything, it's harder now because I know too much.  I've come so far since that awful there's-a-mass-in-your-chest day and thus, I have more to lose.

My May scan has been moved up to this Thursday. Blech.  I've been having some swallowing issues that I had hoped was just another allergic reaction to an antibiotic.  But I finished taking those horsepills and the issue remains.  The good news is the scheduler called today (my good friend Dee - hey, I wonder if everyone who she calls on a regular basis thinks Dee is their good friend...) and signed me up for a first class ticket to this Thursday morning's PET/CT scan with barium - EEEEWWW!!

don't be jealous

I know you, you're thinking how is that good news?  Well the good part is that it's just 1 day away.  That's only a little bit of ativan I need to get through to Thursday.  Then another tiny bit to get me through until I get the results on Friday (after I stalk the nurse/my rad onc for some news).  So I don't have to waste very much of my precious stash...  The downside is of course that I have to drink that chalky nastiness.  I haven't had to drink it since the very first scan on May 27, 2010, so I am hoping that's not a bad omen.

Scanxiety breeds a very specific type of fear:  relentless, all-encompassing terror.  I never understood why people enjoy watching horror movies - I understand even less when I have a constant sense of dread coursing through my veins (blood cancer? no pun intended).

*Memory flashback***I remember watching JAWS as a teenager with my best friend, chanting, "oh sh*t, we're in for it, oh sh*t, we're in for it," every time the DUH-nuh, DUH-nuh music began to play***

Just like we all do, I will suck it up and get the job done on Thursday, wait in my quiet little room for the radioactive glucose to make it's poisonous way through my system, pee like a good girl, raise my arms above my head, hold my breath, zip zip back and forth a few dozen times, and then I will go out to celebrate (assuming the barium doesn't make me lose my appetite for Federal Donuts).

As Judah already knows, and Franklin the turtle finds out in Franklin Goes To The Hospital that true bravery is when you do what you have to do, no matter how afraid you are.  And, according to Franklin's doctor, Dr. Bear, you can even see bravery in his x-ray.  Hopefully the radiologists at Pennsylvania Hospital are looking really closely...

FPS, HELP!

What a week.  I'm pretty sure there are few things in the world worse than having to stand by and watching your child in pain.  Maybe being the actual child in pain?  Naaah.  

Judah has come down with a big and bad virus, a version of Coxsackie A, also known as Hand, Foot, and Mouth.  The good news is the sores are just in the mouth.  The bad news is the bad germs took all the force with which they would've bothered the hands and feet and concentrated all of their nastiness into my baby's poor little mouth.  He's had a fever of up to 104 and been medicated for the past 5 days, refused most foods (milkshake for breakfast?  jello for lunch?  chocolate milk for dinner?  slices of monterey jack as our big and strong?  why not!), cried in his sleep, sweat through his sheets 2 nights in a row... FUN TIMES!  This is definitely one of those times when I wish I could remove his pain with a flick of my magic wand and just drag it over to myself.  I remember cheering myself up during treatment that at least he wasn't the sick one.  I can't imagine trying to endure watching my child undergoing that sort of fight.

the Mouse and Blitstein families

That's not to say he wasn't affected.  Illness turns the whole family unit upside down.  However, remember way back last January, when we took a family trip to Disney World?  I had just finished radiation a few weeks earlier, and the week before my first post-treatment scan (the one that would give us preliminary information about how effective the treatment had been), we had been scheduled to go on an all-expenses paid trip to Disney/Universal Studios/Sea World by For Pete's Sake Cancer Respite Foundation.

happy kiddo

When I first found out, I remember talking to a woman from FPS on the phone, nodding my head, saying, "Wow, that sounds great.  Uh-huh.  Um-hmm," all the while totally not believing she was telling the truth.  Who in the world wants to give US a free trip to Disney, complete with airfare, park tickets (to all Disney parks, Universal Studios, and SeaWorld), a 3 bedroom house (pool included), a rental car, and a stipend for meals and treats?  It turns out they did.  They do this for many, many families affected by cancer.  Dan discovered them while leafing through one of my People magazines.  Since then, he's stayed true to his vow never to make fun of me reading People magazine ever again.  Our trip (obviously) was wonderful and gave us a true vacation from cancer.

Dan's genius idea for waiting in long lines...

Meeting the Seuss Characters at Universal

Next Sunday, we'll be attempting to return the favor by participating in the For Pete's Sake, Walk! down at Citizens Bank Park (you know, where the Phillies play?), April 22 at 9 am.  Please think about helping us pass on this amazing opportunity to other families in need by sponsoring us and/or joining our team and rounding the bases right along with us!  Click here:  My FPS WALK Page to hook up directly with Team Mama Mia.  Because one person's illness affects the whole family.

BUTTERBEER!!

chillin w Legos at downtown disney

magic kingdom day #1

No Guarantees

true photo

Been super busy these past few days, but in a good way (I think).  Lots of possibilities on the horizon and progress on my book.  Many moments of frustration about the fear that hangs out in my backyard, just waiting for a moment when it can monopolize my undivided attention.  However, I've also had a few amazing moments of sighing and enjoying.  Not that the scales are in any way even,  but at least the enjoying is there at all.

Right now, I'm having a sigh.  The house is in the midst of getting cleaned for Passover - kitchen's done, now I'm vacuuming like a madwoman and Dan is in the kitchen working on his mom's famous flourless chocolate cake.  Judah is upstairs, taking a rest while watching a puppet show of Aladdin on the iPad, and I'm stealing a break on the couch in the living room, Mooshu curled up in his favorite sunny spot on the (previously) clean rug.  It's all good.  It's just all good.

I get easily choked up when I talk about my fears (to Dan, to my therapist, to my acupuncturist) because life feels so tenuous, so breakable, like we are in a car that swerved off the 101 and is teetering on the edge.  It could go either way at any moment.

There are no guarantees.  Where the hell have I been all my life that I'm only coming to this conclusion now?  Any hardship, any tragedy can befall anyone at any time.  Clearly, some people are more prone to facing challenges (being born into poverty doesn't help).  But those of us who thought life was always going smoothly hold (held in my case) this inane assumption that life will always go smoothly.  Um, not so much.

Yes, now it occurs to me that we (as in, the big WE of the human race) are ALL teetering on the edge of the cliff in a car that just swerved off 101.  Some of us are cool and calm under pressure, while others get hysterical (ahem), and the rest don't even know they're there.

Anyway.  Each day I come to at least one new realization about the precariousness we all exist within.  I can't wait until someone invents a mind-reading device that can transcribe my thoughts since usually my best ones come when I'm in the car (and taking a leisurely drive through North Philadelphia).  You too, right?

Plus, I'm particularly emotional today as we're now entering the pre-scan month.  It feels like forever since I've seen my oncologist.  I convince myself on a daily basis that the news from this next swim through Radiation Pond will be unfavorable.  Tensions will be running high for the next few weeks, as usual, so please take pity on the folks that are forced to deal with me...  I really really really hope that this Spring, like last year's, has only good times in store, for us all.

Happy Passover (May your matzah be crispy and your brisket be moist) and Happy Easter (May your eggs be plentiful and your pink chocolate bunnies last for a week*).

xxoo


*Gina, that pink bunny shout out was for you. I'll never forget the best (and only) Easter basket ever.