Breaking Up With Barium

tip: never show up empty handed to an onc appt.

No more scans.  According to my main man, Dr. Henry, I have been overscanned already.  And especially now that there has been deliberate discussion (June 2013 ASCO Conference, Chicago) on the topic of post-treatment surveillance, the oncs across the land have determined that past the first year, the likelihood of finding a relapse thru xrays is unlikely.  They have found that more relapses are discovered through reporting of symptoms and/or bloodwork.

Will I never see my onc again?  Nah, not bloody likely.  I still have a few more years before using the "c" word.  Even writing about my chances of a relapse makes me feel like I'm tempting fate, so I won't get into the numbers game.  I will continue to go for checkups every 6 months.  These visits include running labs (the oncology vampires are consistently diurnal) and reporting symptoms.

But no more scans.  No more scanxiety, no barium, no waiting for results.  Hopefully forever, but I'll be happy if we can just say for a very long time.  This is big.  It's strange, it feels even better than my first clean scan.  Of course those results were a big relief and that was a joyful day.  But, I am close to 3 years out of treatment.  I am ready to be DONE.

From where I stand today (okay, let's be honest, I'm sitting on the couch), it's often hard to believe it happened.  If it weren't for the scars, the tattoos, the infertility, the shortness of breath, the dizziness, and the fatigue...  Okay, my life is definitely different.  But my hair has grown out, my brows and lashes have returned, and most importantly my adult acne continues to plague me (what? chemo = clear skin).  It appears to me that I once had cancer, but do not anymore.

To celebrate the fantastic news, my appointment-partner-in-crime (mom) and I went to HipCityVeg for a quick lunch, and now I am waiting for my challah dough to rise.  I'm ignoring the fact that the car needed $1000 of new brake pads and the dishwasher will cost more than $200 to replace the panel.  This is part of life.  And I am living it.

***

no sitter on a saturday night but that's ok

On a side note, I seriously feel the need to extend my deep deep gratitude to so many of you who have supported and encouraged me through the past 3 years, even if only by reading my blog anonymously.  It has not been easy and I'm not the most flexible girl in the world (especially for those who live with me).  To imagine having survived this crisis without the team is impossible, and I hope that when you need me, that I can be a member of your team as well.  I am quite grateful that when I reached out, so many reached back.

Wishing all of my TMM members a very happy and *healthy* 5774 (OR a prosperous 2013-2014 school year).

Much love,
Mia

Every Day is an Anniversary

visit philly

Since there are only 365 days in a year and momentous occasions happen frequently, every day seems to be an anniversary of some major life event.  From experience, I can say with certainty that in the life of a cancer patient, there are many, many anniversaries.  There are "cancerversaries" that mark the day of diagnosis, or the end of treatment (there's often a dispute about when to start counting..).  But less celebrated milestones happen in between and all around those dates.

I will always remember that Wednesday, September 8, 2010 was my chemo round 5.  There was a Stand Up 2 Cancer telethon on that Friday (9/10/10) that I desperately wanted to attend, but no dice.  We watched it from the happy chair.  I remember that September 30 was my 6th round of chemo.  It was a Thursday and I wore a purple wig.

When I make connections to my life two years ago, these are the days that pop up first.  Then I think about the day sevens that were all the low points in each round (both in terms of my blood counts and my physical state).  They were milestones, too.  

In honor and memory of all of the day sevens everywhere - all those people who dread them now, and all of those who will come to know them in the future - we are again participating in LLS's Light the Night Walk, October 27, 2012, in Philadelphia.

We did it! (though I would've preferred to have a scooter)

I hope you will participate as well, by donating whatever you can to our team's fund (click on the button in the top right corner of this blog).  It's a memorable experience, walking with crowds who have been where you've been, supported someone like you, or remember a patient with love.  Judah always looks forward to seeing the balloons all lit up, floating down West River Drive, as we walk across from Boat House Row, all aglow special for us.

Honored Survivor 2011

Team Mama Mia 2010

If you are interested in where your money will go, please visit our team page, which will give you lots of information about how LLS allocates funds.

Thank you.  

Team Mama Mia 2011

Letting Go

smokey the chicken (only you can prevent scrambled eggs)

We are blessed.  Our child is a happy, healthy (whisper that, will you? don't want to tempt the evil spirits) five year old.  Our sparkly-blue-eyed, sun-kissed-beach-haired, gecko-watch-wearing, toy-rhino-toting child.  He reads, he writes, he's creative, funny, and knows more dinosaur species than I ever did.  He's now acquired a top 5 Phillies players list as well as a working list of birthday requests (for next year).  He loves Legos, all animals, playing games, doing underwater flips, and wowing you with his soccer skills, baseball abilities, and dance moves (of course only to be done while he sings).

And tomorrow, I must take him to kindergarten.

Alternatively, tomorrow, I also get to take him to kindergarten.

A simple matter of perspective, you see.  On my left shoulder, I have the gentle but appreciative voice, the one that reminds me that a few decades ago, I might not have been here for this important day.  This is the same voice that pipes up, recounting Mary Tyler Mom's story of daughter Donna (not a happy ending, but life-changing and worth a read during this, Childhood Cancer Awareness Month), who never got to go to kindergarten.

On my right shoulder, there is the nag.  She is a constant in my ear, bringing up all the worst case scenarios.  She is the future projector, glass half-empty kind of gal.  Basically, she sucks.  She tells me we might not get to do the first day of kindergarten again - this is a one shot deal - so I better not muck it up.

I can't freeze time anyway, so I have no choice but to go with it, let it carry me, a lunchbox, a backpack, and a little boy around the corner and down the street tomorrow morning.  I must beg it to help me not cry until he is inside the building.  I will have to focus on my own To Do list, getting prepared for my own fresh start this school year, and how freaking annoyed I was with the same kid home all rainy day today.  He needs school and I need him to have school; why is it so damn hard?

I am sending my very warmest hugs to all of the other parents in the same position, who are both dreading and longing for the start of school all at once.  This year, for the first time since forever, I'm not setting up my classroom, labeling folders and notebooks for my students, or passing out at 4:30 from the exhaustion of hauling book-filled milk crates out of storage.

This September is about new beginnings.

And away we go.

Busy Living

Where have you been? [you might be wondering]

As the stupid cancer folks are known to say, I'm busy living.  

There was that c-razy Facebook/Jewish Exponent contest, which, by the way, we won (thanks to all of our fantastic friends and family who liked the photo AND shared it with total strangers far and wide, asking them to like the photo, too).  

Oh, yeah, then there was that new job I was offered (and accepted)..  Guess who's getting business cards??

There's been socializing with wonderful people, 4th of July fireworks for Judah (first time), surviving a brush with hurricane speed winds at the beach, painting and redecorating Judah's bedroom (still not ready for photo tour), visits to new doctors' offices, entertaining Judah during a week off from camp, new acupuncturist, The Amazing Spiderman, and finally selling the white car.

Judah and my favorite founding father

BIG hippo

bye bye miss american pie

initial stages of pasta e fagiole 

Oh, and I found and demolished 2 gray hairs.

ew.  offensive gray hair.

All in all, I'd have to say it's been satisfying to be able to function semi-normally.  Summer heat and Northeastern US humidity are extraordinarily bad for my health (worsened fatigue, shortness of breath, and slightly elevated irritability...), but the opening of a new frozen yogurt place in our neighborhood has been helpful.  

can you guess which one was mine?

Now.  This may look perhaps like ordinary life.  In some ways, it very much is.  Hanging out with your kid, cooking dinner, dealing with typical growing pains of gray hairs.  But what I looked for (and couldn't find) while I was in treatment were the blog posts of what comes next.  For the most part, people are too busy living to come back to their blogs and update.  Plus, the every day stops feeling so monumental.

Psst: I know a secret.  (Most of us in the C club are in on it.)  Every single day can be extraordinary, even when full of vacuuming, carpooling, emptying the dishwasher, walking the dog.  There was a time when just doing one of those things in a day was a feat.  

I think it's valuable to take a minute and be amazed at yourself tonight.  What did you do today that you are proud of?  What might your life look like if you couldn't carry the clean laundry upstairs?  Or handled a kid's exhaustion meltdown?  I've had many a moment in the past few years when I became fiercely angry with my body and felt let down by cells I trusted to keep me safe.  But recently, I've tried to be a little more respectful and appreciative of all that my body unnaturally endured and survived.  I'm still breathing (and presumably, so are you).  And that's a good thing.

xxoo

Birthday Brats

birthday 2010 - sleeping the flu off on my left side

You'll forgive me if I'm not all that excited for my birthday this year.  A survivor (with yet another clean-ish scan in her pocket last month) perhaps should be elated to be able to celebrate this day.  Last year, I was happy, toasting to myself with a purple orchid martini.  Today, however it feels like a reminder that the past two years were stolen from me and I am still mourning the loss.

I know, I know.  I'm lucky to be here, and doesn't that put things in perspective, yadda yadda.  Yes and no.  I am lucky to be here, but every day doesn't feel like a gift.  A few days ago, it felt like the fog was lifting (sunshine helps) and I had a great day.  The day was happy, from start to finish.

But sometimes it's hard to distract myself from the fact that my life is different now.  My body is different.  The hopes and dreams I had for myself and my family are up in the air.  The visions of the future are all question marks and cloudy bubbles.

Of course I know now that in reality, the future is that way for everyone, and was that way for me before, I just didn't know it.  There's still so much grief and anger in what is not.  And what I fear may never be.  New normal frickin sucks.

It's difficult not to compare myself to all of the happy, functioning, thin, rich, well rested, fertile, professionally satisfied, healthy people out there.  Yes, mostly people put out there what they want you to see (extra specially on Facebook), but leaving out the bad parts isn't quite lying.  And I do wonder how people who are just meeting me now, no concept of the past few years, see me.

birthday 2011

I used to love my birthday with a passion, reminding everyone within a 30 mile radius of the countdown as soon as MLK day had passed.  The day has very rarely lived up to my expectations of what a birthday should be (the most incredible day all about you so special favorite things love balloons ribbons rainbows everywhere) and a few years ago (probably when I discovered that birthdays are supposed to be for the moms) I docked it down to just hoping for a good dinner out and a candle stuck into something yummy.

This year feels like poo for a couple of reasons.  Last year I was fresh off of a clean scan and basking in the no-cancer glow.  This year I am turning the same age as a friend was when I met her and started babysitting for her awesome kid(s), who just had his bar mitzvah last year.  So, a) that means I'm old and b) my life looks so different from where hers was at this age.  Silly, perhaps, but that was the image in my mind's eye of what it looked like to be this old.

Tomorrow I will celebrate the blessing of being alive for another year.  I will eat roti canai.  For dessert, there will be husband-made heavenly lemon meringue, with a candle.