On 48

It's been over a year since I last posted on here, but even 15 years out of treatment, I still know that patients currently facing cancer like to see updates on blogs. So I'll continue to come here to write when I can, both because it's cathartic for me, and maybe because it can bring hope to someone else that life can go on after cancer. Now in the 15-20 year post-radiation danger zone, those fears easily return during routine checkups but they aren't keeping me from living.

I celebrated my 48th birthday this week, observing a one day distance from the (horrific onslaught of) news, while absorbing as much joy as possible. This joy included getting a manicure, shopping at Costco, going out to dinner with my family, including my college kid. I also received several gifts from me to me, that arrived on my birthday: a scarf that can also be a hat, a tshirt with a subtle nod to my current television obsession, and a box full of girl scout cookies. I ordered my cookies from a 2nd grade troop in Minneapolis that includes trans and neurodiverse youth who cannot safely sell this season due to the ongoing violence our government continues to perpetuate there.

dinner at Sally

The ground has been covered in snowcrete for the better part of two weeks now, it's pretty freezing outside, and all I really want to do is curl up in bed with hot tea and just toggle back and forth between a good book and Heated Rivalry.

I didn't feel guilty for taking the day off from the global terrors, but I do feel sad it was only a day. The responsibilities, obligations, stressors, and worries of the world are back now, because I'm alive and conscious. I do know what it's like to shut everything out and crawl in a hole (I was doing a bit of that a year ago), and my eyes are still healing from that period of time. 

IYKYK

The scotch tape is still on my glasses, and I am sure to have my fit over sunglasses with me at all times. I even wore them at the dentist's office last week, ON TOP of their protective glasses, which didn't help with the lights shining in my eyes.

With the help of a wildlife rescue friend of a friend, I have been trying to trap and help an injured fox in our neighborhood, but so far, we've only been able to catch a squirrel and a raccoon. The fox is proving a bit more clever and clearly not hungry enough to make his way into our traps for a hard boiled egg.

Foxy with a limp

Work is ongoing with some amazing schools and kids and teachers. While it's sometimes hard to get out of bed on these cold winter days, I always feel better after I've been on a school visit. I come away with a full heart, warmed by their curiosity, their thoughtfulness and creativity. Children are a balm to the soul. I was lucky enough to listen in on an interview one of our groups did with a musical collaborative group, the Ill Doots, while I was waiting to get my driver's license renewed. I wished the entirety of PennDOT could have enjoyed the interview as well. 

Ill Doots music from WHYY's Albie's Elevator

This is to say that life goes on. And thank goodness for that. I've got dog and kid snuggles, friends to make plans with, family who love me, really delicious food to eat, and important work to do. I'm still here and I hope to keep being here as long as I can, helping people, and finding joy wherever I can. 

Forgotten

Yesterday, December 27th, was my third cancerversary.  It marked 3 years since the end of my treatment (chemo and radiation).  The most spectacular thing about reaching this milestone is that I forgot entirely about it until I was falling asleep last night.

This is to say to all of those people right now struggling to get to recovery, it is possible to get to a place where you are not only NOT thinking about cancer every day, but you can even forget about it completely.

Granted, I suffer from a poor memory (is that a side effect of chemo? or getting older?), and we happen to be on vacation at the moment and I am happily immersed in feeling as far away from my normal self as I can.  We have no routine, simply reading, eating everything in sight, and playing in the sun.  It is, shall we say, not bad.

I am grateful today for the brain's ability to heal in a way I did not think it could.

vitamin D

Well Wishes

December again.  Time moves on, I suppose quite predictably, and my life continues to travel away from cancer.  Score 1 for me.  In less than 2 weeks, it will be precisely 3 years since I finished first line treatment for my Non-Hodgkins.  Quite hard to believe.

This past year has been a year of new normal (ick I hate that term).  Getting into another full year of my teacher coaching, new friends, a first grader in the house, adding to our family this past Spring with the arrival of Alex the goldfish, Dan and I continuing to march on in our quest to have another kid, and so on.

I've been cleaning and clearing out unnecessaries, now that winter is practically here.  A few days ago, I came across this box full of most of the cards I received when I was sick.

Friday afternoon, in my traditional end-of-week cleanup, I began to go through the cards.  I'm thinking it's time to ditch the box and just hang on to a few reminders of the love that was sent to me and Dan during our little crisis.

I was seriously in tears (not that anyone's surprised) reading each one.  Since then, I had definitely pushed these memories to the farthest, tucked away corner, refusing to recall the need for such words of support.  But this was a treat - feeling so loved all over again.  I am in awe that people knew me so well; some of the cards were created with me in mind.

I began to make piles of the cards:  Keep (in a smaller, cigar box), Use for art projects/making Get Well Soon cards for others, and Recycle.  It was not easy to make such decisions, decisions I obviously didn't want to make 3 years ago, either.  And as I looked at each one, I was amazed at how my Hancock family (the school where I used to teach) sent me so so many tokens of love (Roe - I finally destroyed the evidence!).  My friends (and Dan's coworkers and my parents' friends!) sent spirit lifters, cookies, soup, dinners, wigs, fun stuff from my wish list, paper hugs and plenty of them - personalized and handpicked.  Students and their parents sent encouraging words.  And of course, letters from my family underscored how supported I was from every corner of the world.

Remember the white M&M Kung-Fu fighting?

Maybe you can never know what sending a card can do for someone who is sick.  Unless of course, you've been there.  And maybe these cards meant more to me than to others in similar circumstances.  But I am here to say they helped.  They made me feel surrounded, lifted even.  

BLITSTEIN:  The Musical (by Will M., former student)

And of course I have more wishes for the future.  The superstitious piece of me feels like spitting (tfu-tfu) after writing that, but it is true.  Hopes and dreams.  And so much gratitude for those who helped me survive and walked with me into recovery.

the bulldog is fuzzy

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

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

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

Being 34

flowers, rainbows, and balloons: just as it should be

Alright, so it wasn't as bad as I thought it would be.  I do realize that relatively speaking, 34 is quite young.  Although I've read enough Indian saga stories (A Fine Balance, A Toss of a Lemon) to know that in many other cultures, I'd be a granny by now, if I were still around at this age.  But I never had a hard time facing my birthday before this year, which took me by surprise.

ummmm.  couldn't wait to dig in.

Then, loving people came through:  friends, and family, and Facebook.  Having your birthday on FB is so rad.  100 people you may or may not have spoken to in 15 or more years write you happy messages - you can't help but smile.  I felt loved.


My bake-tastic husband fixed me a Heavenly Lemon Pie (this is as close as I could get) and I tried not to hog it all.  My mom made cinnamon buns (healthy ones, I swear), there was a sesame sweet potato pastry from Paris Baguette Bakery, pizza lunch at Jules, and dinner at Penang, complete with the roti canai deliciousness, and a fried coconut ice cream pre-dessert treat (bonus restaurant serenade).  Fab.

And today, for the first time in I don't know how long, I actually wanted to freeze time.  Judah, playing on the front porch with his "sister" (a blue smooshy lizard aptly named Lizzie), a warm pile of laundry in the living room, sunshine poking into every possible corner.  Bliss.  And I wanted to just stay in that sunny moment when nothing bad was happening.  Kairos time, if you will.  It struck me because for the past few years I've been in search of the fast forward button, wanting to push through the misery, depression, the fog of frustration and fear to the clear skies of normalcy.

a moment in Kairos time

I don't know if normalcy exists for anyone at all, or if it's just an illusion we cling to so that we can get through each day.  If I thought every day about ALL of the potential for terror that looms, I would need a lot of Ativan.  With refills.  (Have I ever mentioned that the only news I watch on tv is The Daily Show?) So we obviously can't dwell in a place of possibility all the time, but really need to try to be present.  I'm working on it, not constantly future projecting.  And today happened naturally, no effort required.  Yes.


ps. Enjoy a Mat Kearney song of the moment:  Closer to Love.

most amazing handmade just for me mug!!  thank you thank you nina!!