Thursday, November 29, 2012

23 monthaversary

Two years ago this week, I was just getting started on my 20 rounds of radiation therapy.  We did not radiate lightly, or for "insurance", but because my bulky, persistent (bitchass) tumor had not been entirely decimated by the 6 rounds of chemo I'd already swallowed.

Every day at 4 pm, I would drive myself over to our closest hospital, leave the car with the valet, and then scan my id card to let the technicians know I had arrived.

Push through the double doors, grab 2 uber-used blue gowns and head to the dressing rooms.

gown de abington
There, I'd strip from the waist up, and replace my soft sweaters and undershirts with those sickly old rags.  Hang all belongings in a locker, take just the key on a spiral plastic bracelet keychain, and make my way to the ladies' waiting room.  There, I get to be the youngest depressed person in the joint.


Hear my name called and mosey on over to the treatment room with the green dot over the door.  Lean mean green machine.  Enter through the bomb shelter-esque doorway.
the long hallway
Assume the position - on my back, in my mold, arms above my head, eyes looking up.  And which Christmas song will add to the soundtrack today?  Ah yes, Jingle Bell Rock.

see the webcam in the corner of the room?  they were watching me from the hallway.
Technicians make adjustments, lining up my tattoos with the red lasers shooting out of the walls, tell me not to move and leave me alone with the death beam.  The indestructible door closes silently.  I can hear the machine whirring.  Spitting the invisible fire in the shape of a tumor.

the source
A squirt from above to the tune of ten seconds, then a squirt from below.

I hear the door open and the cheery voices return to help me sit up, put my mold back into its cubby, and wish me well until tomorrow.
my mold: doesn't it look just like me?
I take my keychain bracelet back to my locker and shed those scraps of hospital blue quickly but carefully, so as not to irritate the red, burned spots on my chest and back.  Going back out the way I came, I return to the valet and ask for my car.  Since I can't possibly tip the guy every day for moving my car 5 yards,  I decide to save up and give him a hefty tip along with some high quality chocolate at the end of the month.  I think he still remembers me.

Radiation was lonely, very isolating, and full of quietness.  Nothing like the constant hustle and bustle of the chemo clinic.  While it didn't make me nauseous, it made me sad, made me feel like a sick person.

Now, twenty-three months later, the crisp, drying air feels the same.  The Christmas songs all sound the same.  The clear sky looks the same as it did that month of December.  How odd for so much to remain unchanged.

Wednesday, November 7, 2012

Giving Thanks

hand jive turkey photo source
There seems to be a heckuva lot of gratitude going around these early November days.  I'm jumping on the bandwagon, but with a twist.  In my meditation group, one regular gratitude practice is to think of something that is easy to be grateful for, and something that is difficult to be grateful for.  While I'm not always an advocate for finding a silver lining, it is helpful - when you are working to feel happy about today - to try to find some value in life's challenges.

Tonight there are many things that are easy to be grateful for.  Starting with the fire in our fireplace right now.  So glad I grabbed that clean burning duralog on my last trip to WF.  It makes me feel cozy and snug when the weather is so mean and cold outside.

Then there's Judah's half-birthday today.  I made a cake (yes it had zucchini, carrots, and walnuts in it - but it was decorated with lemon cream cheese frosting), which he loved, and he got to pick out a few books from his school book fair this morning and I am just so grateful to be here for another happy day in his life.  Like I said, easy.

I am ever so grateful about the results of last night's election.  Between the increase in women voted into our national government, the approval of equal marriage rights in 4 states, and the president, I am profoundly grateful that the opportunity is there for our leaders to make good change in our country (and even further out into the universe).  I am not going to go too deep into the politics as it can get sticky, but I will say, as a person with a cancer history, I am so grateful for Obamacare, most especially the clause about preexisting conditions.  As long as this law continues to be upheld (by our dear SUPREME COURT), I will always be eligible for health insurance.  And so will you.

I am grateful for new movies coming out (Les Mis!, This is 40).  Grateful for TiVo and commercial skipping.  I am grateful for Ayelet Waldman and her book Bad Mother, which makes me feel like a good one.

Now.  Here's where it gets a little tricky.  Something not so easy to be grateful for...

Well, I could say that the election was an awful waste of millions (billions?) of dollars, stressful back and forth, scary threats and lots of lies.  I am grateful that we've had the experience because we have the chance to reflect on how harmful it can be to the health of us ordinary citizens.  The stress was overwhelming, but the relief palpable.  I am grateful to feel relief.

Can you think of something you're grateful for?  Something easy or maybe not..?

Tuesday, October 30, 2012

Lucky Break

Eek!  I've almost let the entire month of October go by without posting.  So glad that I've got time to kill here on the post-Sandy east coast, where we are all in recovery mode after last night's crazy storm.

hugs for the japanese maple who survived intact

other trees weren't as lucky

exhibit a

a little too heavy to drag

where DO the tough go during a hurricane?

to run laps on the track, of course! (only possible because Sandy ripped the fence down)
We were extremely lucky, spared discomfort (only lost power for about 8 hours) and damage to any of our property.  The worst part was fearing that the gusts of wind were going to blow clear through our windows late last night.  To help alleviate that fear, I did a bit of meditation last night with a lovely lit candle by my side, focusing on both my breath as well as the wind, which were often hard to separate.

I am particularly grateful that my family is healthy tonight, that no one was in a hospital that lost power, and that no one relies on electricity-dependent medical equipment to breathe or receive life saving meds.


The past few months have been busy ones:  our family trip to Woodloch Resort, adventures in my new job working with Philadelphia teachers, the birth of our newest niece, a high school reunion, a new acupuncturist, Light the Night 2012, Judah in the ER for croup (AGAIN), cheering on lacrosse players at the Headstrong Lacrosse Tournament, joining a new meditation group, and helping Judah navigate the new waters of Kindergarten at our neighborhood school.  It has taken a hurricane to give me a chance to slow down and write again.

honorary captain

woodloch breakfast

woodloch bumper cars (Judah votes this as his #1 favorite activity out of 300)

Team Mama Mia representing at LTN 2012

after first week at new job.  nuff said.

2nd bout of croup this year :(

first kindergarten field trip 

back on the cushion
Storybook parade - Judah is Jeremy Jacob from How I Became A Pirate

And while I'm still trying to find the new normal (blah blah blah), the photographs make it seem as though we're already in it.  My hair feels more familiar, I cope the best I can with the still-lingering effects of treatment, I continue to visit my therapist weekly...

I realized after mindlessly watching Eat, Pray, Love (the book was def worlds better than the movie, but sometimes you gotta settle) for the 6th time the other night that I, like Liz Gilmore, am also working at forgiving myself.  Gilmore was recovering from a divorce that she ultimately blamed herself for causing (as did her ex-husband).  But her journey of self-discovery through Italy, India, and Indonesia ultimately rests on her ability to enjoy life again.  She believes she's done that after eating her way through all of Italy, but when she gets to India, she can't rely on her tastebuds to distract her anymore and she is forced to learn how to quiet her thoughts.

Now, seeing a lot of parallels to my own emotional journey, I have gone back to meditation to help me feel more in control.  It's funny because when you are focused on your breath, or someone else's voice, you aren't changing your mindset, you have just focused your brainpower away from turbulent thoughts.  Instead of allowing your mind to spiral out of control with fears of the future, you switch gears and let go altogether.

Well, anyway, I'm working on it.  I didn't want any of my fellow cancer warriors to think I'd forgotten about keeping this blog current.  I hope you'll continue to comment, send messages, and share your own adventures.  It always helps me to feel like I'm not the only one on the path to regain stability.

ps. drink up

Wednesday, September 19, 2012

What Good Can Come

recovering from biopsy #2, re-inflating "our" lungs

During treatment, I worried on a daily basis about how my then-3 year old would be forever scarred by my illness.  Initially, he struggled with separation anxiety, but was always eager to cheer me up with snuggles and silly faces, or cheer me on as he watched me sing through nightly injections ("Go Mommy, go!").  Each day I was unable to bathe him, or go through the bedtime routine, or drive him to preschool, I worried about how he was doing.  What was he going to take away from this?  Would I even be around to find out?

best snuggles ever
A wise friend related this concern to her own daughter, who had connected uniquely with her special needs cousin, able to communicate and relate to him in ways that others could not.  My friend told me that because of her nephew, her daughter had learned empathy, kindness, and concern for other human beings - qualities she may not have developed without firsthand experience.

This comforted me immensely.  I know Judah had always shown signs of being caring and compassionate, but he was only 3.  I loved to think of grown up Judah as a doctor with wonderful bedside manner.  Or a professor (as my mother-in-law likes to call him) who could truly relate to his students.
thank goodness for janet and lou's pool

Lucky for me, I didn't have to wait 30 years to find out who he would become.

This afternoon, he had an early dismissal from school (first year of kindergarten).  I arrived a few minutes early and hid behind a tree to watch him play on the playground.  My first prayer was answered - he wasn't all alone.  He was happily see-sawing with 2 girls and 3 boys - all of different colors.  The teacher in me was thrilled to say the least.  Relief and pride pumping through my veins, I walked over to the door where his class gets dismissed and noticed the mother of one of the other girls he'd been sitting next to on the see-saw.

Judah had informed us last week that he and this child were in love with each other, and with a smirk on his face, that they would be getting married one day.  I relayed this information to her mother, hoping she didn't feel he was too forward with his 5 year old love.

She smiled and nodded.  She said, "I have to tell you something." I got nervous.

"Last week, [my child] fell down while the class was going into the cafeteria before lunch.  She just tripped over her own feet and fell.  The next day, totally spontaneously, Judah came over to her and told her, 'You know, I fell down one time, too.  You don't have to feel bad.'  And I told her that he was a friend to hold onto for a long, long time."

I thanked her immensely for telling me this story;  I wanted to tell her how he learned to think about other people's feelings, but decided to hold off for now..

At this point, you can imagine there are tears running down both of our cheeks, both mothers thankful for our happy children, having found friendship in each other.

When I think about how cancer has affected my family, it tends to run on the negative side (that's putting it lightly).  And recent days especially, have been tough, not knowing what is to blame for our bad luck, or if/when my body will ever get past the trauma.  At this moment, for this very moment, I can say that one incredible thing came from the cancer mess.  I may be overstating, but who cares?  I'm giving myself permission:  my child knows how to think about other people's feelings, and is not afraid to show someone he cares.

This mama's heart is singing.

Saturday, September 15, 2012

World Lymphoma Day

Check your pits.  Have a sunshine day, sent straight from your favorite lymphoma-aware family.

PS.  It can't hurt to donate to LLS on a beautiful day like today!

Sunday, September 9, 2012

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

Thursday, September 6, 2012

'S Wonderful

Oh, happy day!  Here's a gratitude list.

1.  Judah got onto the bus without even turning around for a wave.

2. My oncologist told me I'm doing "so wonderful" and I shouldn't come back to see him for another 6 months.

3.  I got my work assignment for the majority of the year and it is 13 minutes from my home.

4.  Revenge was taken on 2 MEAN drivers on Broad Street this morning by tweeting their photos to the general public.


5.  My favorite nurse, Priscilla, gave me a painless blood draw.

6. Judah's kindergarten teacher emailed parents at his prep time to update us on the day.  Not quite as good as having a K-Cam (fly on the wall), but more than I expected!

7.  Speaking of flies, I assembled a fruit fly trap that works!  There were at least 50, now there are none.

8.  A delicious indian lentil stew that's cooking in the crock pot for dinner.

9.  95.7 fm played Parents Don't Understand on the radio this afternoon and I remembered 95.7% of the lyrics.

10.  Dan avoided a major migraine last night and is just feeling foggy today (instead of totally incapacitated).

11. Dr. Henry set me up to work with a research assistant to help survey my online support group, in the hopes of gathering data that may help other researchers find a common thread.  26 members have already taken the survey.

12.  Leaving my therapy session today was a waiting room full of people just as screwy as me.

Monday, September 3, 2012

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.

Tuesday, August 21, 2012

This is how the day went.


Appointment time for CT was 9:30 AM, with a 9:15 arrival.  Of course I left the prescription sitting on the dining room table, where I had left it out so I would remember to bring it.  Doctor's office faxed it over and we were called back by 9:40 AM.  

I am so happy because I have so much fun to look forward to, wearing my favorite SU2C sweatshirt.

Umm.  Mochaccino flavored barium.  Doesn't get much better than this.  Breakfast covered by insurance!

SOOOOOOO very extremely vomitous.  

I *almost* drank the whole first container, then another patient ratted me out and the stupid tech made me drink ANOTHER CUP!  Rude Albert.
After waiting for almost 2 hours, I was finally scanned in 4 minutes.  Now fully nauseated from the barium/contrast combo, we focused on lunch (hoping I'd eventually want to eat it).

Doesn't everyone go to Sarcone's after a CT? (For the record, I got a tuna and a veggie)
On the PA turnpike to visit the in-laws... 

The rainbows have yet to bring bad news. Do you see the faint double?  The Hawaiians say it's a blessing.
Thus completed the day of my 20 month scan.


ps. the results are in:  no significant change in mediastinum anterior (original tumor site) or the fibrosis in left lung.  just a bonus kidney stone for fun!  life in remission continues...

Sunday, August 19, 2012

How To Distract Yourself From Your Ever-Creeping-Closer Scan

Three words:  The Daily Show. (A few more words - it's important to have at least a week's worth of episodes stockpiled on your TiVo or DVR.)


Best of the best.

And included here is a link to an excellent interview Jon conducted with David Rakoff, dark and hilarious writer, almost 2 years ago.  I like his pessimistic M.O. - he says at one point during the interview, "Pessimism is detail-oriented thinking."  Perfection.

(Psst.  Watch the interview if you want to understand what I write next.) Don't get me wrong, I love Kris Carr as much as the next person.  But I'd rather not add another layer of guilt on my already Princess-and-the-Pea type pile, by feeling like my ultimate survival is dependent on my ability to think optimistically.

You'll have to excuse me, I have to go eat my dessert salad before I go to bed, so my stomach can prepare for the scrumptious mocha flavored barium breakfast that is chilling to optimum ingestion temperature in the Penn. Hosp. refrigeration system at this very moment.


Thursday, August 16, 2012

Fear (and wanting to spend the next week under the bed)

Some days are stunners, sunshine and unicorns, hazelnut coffee and sweet potato pie.

Today was not one of those days.  Today was the opposite of sweet potato pie, perhaps like sucking on raw horseradish root.  Some days taste like scat, all day long.  Sorry to disappoint, I don't want to get into too much detail about the rottenness of the bad mood details.  Simply frustrated with the continued uncertainty and unfairness of this fragile life.

Got a scan coming up in T minus 4 days.  A CT this time, three cheers for no radioactive glucose!  Quite honestly, I haven't done much active worrying the past few weeks, a big deviation from my usual pre-scan behavior.  I'm sure there's a live anxiety current running just below the surface - I can tell because as happened 4 months ago, I've been having difficulty swallowing (instead of feeling itchy, my telltale anxiety symptom).

One of my wise therapists told me recently about how when we are feeling down in the dumps, our memories tend to pick out all of the other times we felt down in the dumps and push them towards the front of our brains.  All we can remember in this state are other times we were in this state.  Sad times mean we've always been sad (and let me add my own piece here:  that we will always be sad).  In times of grief, all we can see is grief.  You get the idea.  While this makes perfect sense to me, as our brains are always looking for links and logic, it's still nearly impossible to talk oneself out of a mud puddle.

Most of you have heard this Florence + The Machine song already, but I played it on repeat during this morning's commute to my final day of training for the new job.  There are so many lyrics that simultaneously stir and comfort, and of course, as any good lyrics are, they are open to multiple interpretations.  I'm mostly sure that this was written about some volatile relationship, but I prefer to think of it as our relationship to whatever dogs us from our past ("It's hard to dance with a devil on your back").  In my case, it's fear.

Fears of the future ebb and flow with the phases of the moon, and perhaps that's the most reassuring news:  once they flow, ebb comes next.

Ready for a new moon.

PS. My goodnight gift to you: click here (song starts 1:26ish).

Wednesday, August 1, 2012


do you feel it?
I'm not quite sure how to describe the confusion I feel at the moment.  I realize this blog is not dedicated to politics, but it is mine and I can do what I please.  Many of you are probably aware of this whole Chik-Fil-A ridiculousness going on all across the good ol' U. S. of A.  For me personally, the thought of eating that food knowing where (or rather NOT knowing where) it comes from, how the animals are treated, how the meat is prepared and grease-i-fied for your eating pleasure, is enough of a turnoff.  Chicken nuggets are not my thing.  But beyond that, knowing that by paying them for their fast food, I would be contributing to the promotion of hate, my Chik-Fil-A appetite is no more.

On top of the anti-gay funding, I have also learned about the Eat More Kale fiasco, and how CFA continues its hot legal pursuit of a guy in Vermont who prints (in his house) shirts that apparently rival the slogan "Eat More Chikin".  REALLY???

Then there's this whole voter ID business.  Let's try everything in our power to disenfranchise the Obama voters.  Take away one of the only ways people have to feel included in our national debates.  Let's move our country backwards.

Don't get me wrong, I am glad (after being reminded by an old friend who lives in a much different nation) to live in a country where we have opportunities, healthcare, clean water, mandatory public education.  But why are there so many people here intent on hating others?

I wonder if just one of these haters had a major life crisis and found a community of people immediately activated in their support, perhaps they might value community differently?

I do believe in the power of community love and passionate people.  And not for nothing, I do believe we are here on this planet to help each other get through tough times.  If you're not helping, at least get out of the way.

Your good news for the day:  Judah had his yearly check up today for a kidney condition he was born with (discovered in utero).  The doctor looked at his ultrasound and could not detect a problem!  His kidneys are gorgeous and lovely and he no longer needs to see the specialist.  Luck and love.  Hallelujah!

Friday, July 27, 2012


good reminder

As many of you know, I started a new job this week.  This job - so far - seems absolutely perfect for me.  It's part-time, non-profit, working with incredibly accomplished colleagues, coaching teachers in and around the city.  The past few days I've been getting oriented to the principles of the organization and undergoing some meaningful training along with 8 other new hires, both from Philadelphia as well as a few other cities.

I think a lot of cancer survivors struggle - upon returning to work or changing their professional directions - with how and when to disclose survivorship.  Will people think less of you?  Will your employer worry about your ability to perform the required duties?  Will you receive equal or fair treatment from others?  For me, of course this wasn't a topic of discussion during my interviews, or a part of me I felt willing to share with my co-workers during lunchtime conversations.  It's a rather large meatball to drop onto a stranger's plate.

This morning, we entered into Day 3 of our training.  Our new presenter assumed (correctly) that we were "name tagged" out (all you educators out there will know what I mean), and she simply asked us to write down one unique thing about ourselves on a colored 3x5 card.  I struggled to think of the perfect idea - I enjoy crafting, knitting, sewing, traveling, mothering, beaching, reading... but none of these seemed particularly out of the ordinary.

Then I remembered I am a writer, too.  Not that there aren't OODLES of self-proclaimed/blog writers out there, but it is something I enjoy that may set me apart a smidge.  Anyway, on my card, I wrote simply, "I write a blog."  Wouldn't that be enough?

Turns out, no, all eyes on me, expectantly waiting for me to elaborate.  Blog?  What about?

Game time.  To reveal or not?

I chose to disclose.  I spoke quickly, spitting out the bare minimum details, cheeks flushing, and the reception was warm. But still, I was thinking it was a mistake.  TMI, right?

A few hours later, when we went to take a morning break, a co-worker came up to reveal something personal of her own.  We made a great connection.  And even later at lunch, my new friends were asking for details, and another revealed her father begins chemo for lymphoma next week.  Another connection was made with someone whose mother was diagnosed with a rare cancer (caused by toxins in her school, ahem).  And yet another person explained how she had been dealing with an autonomic nervous system disorder (like mine) since her mid-20s.

Wiki-London 2012
Wow.  I was blown away (both by others' willingness to share and by how close EVERYONE is to stupid cancer), and also a little disappointed that it was our last day together as this little group because only 3 of us are local.  But I learned a super valuable lesson.  Opening yourself up can encourage others to do the same.  In hindsight, I'm so glad my game time decision turned out to be a good one.  Taking risks is not easy, but it can pay.

To all of the risk-taking athletes across the pond, Happy Summer Olympics!

P.S. Unsure of how to talk to someone recently diagnosed with cancer?  WATCH.