It's finally almost time

for summer to be over and George to start kindergarden and also my radiation to be over at nearly the same time; just 12 treatments left for me. The anticipation for both of these changes is dissipating....on the Tuesday after Labor Day George will go to his new school and though I am still full of bittersweet feelings, it is going to happen and I feel ready for it. New rhythms will be created in our lives, walking him to school and getting to know his new teacher to start with, and we'll each, George and I, have to reconfigure the dance of our relationship.

And this end of my formal treatment, I am really ready for that, too; I feel like I'm done with it now, frankly, even though I still have my morning ritual of running out the door at 7:20AM with my coffee mug in hand to head to Fox Chase.

I'm done in that I can sense the ways that I've changed in the last six months; I can feel what it is to have come out of being a thirty-seven-year old woman, mother of two young children, diagnosed with breast cancer. I can feel what it means to survive. I can tell you that the smells and tastes of summer

really have been much sweeter and deeper. I can tell you that I forgive others and myself much more easily. I can tell you that I decluttered my office at work, throwing out papers I had held onto for six years but had never looked it because I could say to myself

I really don't need this.

I can tell you that I feel like my soul has landed more completely in my body and I can tell you that may not have happened just now if I hadn't brushed so closely against my own death--

by that I mean

looked it in the face.

And by looking at my death in the face I mean being scared shitless
and also kind of not being scared shitless, kind of being okay.

And being okay,knowing that I am really here, now, present,
alive, surviving, resilient, courageous, vulnerable, forgiving

that is what I mean by smells are sharper and sounds are clearer and cares are less.

It's finally almost here when my regular cancer treatment at Fox Chase will be over
and I can go back to being

a mom like the other moms taking their children to kindergarden and preschool

and I know too
that what I am feeling now

the intense, vivid, sensual appreciation of the world inside and around me
may dull and fade in time

and that that will be okay.

I've slogged my way throgh 1/2 of my radiation treatments

It's been a f--ing hot week here

That's all I have to say just now

Really

Love to all

1 week of radiation down,

5 weeks to go. I've never been more thankful that I live so close to Fox Chase. My appointment is for 7:30AM. I leave the house at 7:20AM, arrive, park, take the elevator to the first floor, change into my gown, put my bag and clothes in a locker, sit in the waiting room, pick up a magazine, find an article I want to read, get called back before reading it, get zapped for 8 minutes, go back and get dressed, this time rubbing aloe vera onto my skin, take the elevator back upstairs, walk to my car, drive back home and arrive at 8AM so I can finish getting the kids ready for camp. Not bad! The routine has even motivated me to get school bags and lunches packed the night before which makes for a much easier morning.

No side effects to report. 5 weeks to go. I am feeling well.
***
I've been walking a few mornings a week, when I can fit it in, plus getting back to lifting weights which I alternate with yoga (20 minutes of either one most days). It's not a hard core workout by any means but I am feeling the difference. Exercise is such a clear antidote for stress, both in the endorphins that get released in my body and also in the way that moving my body takes me away from the racing thoughts in my mind and grounds me into my body, into the now.

I wish that I had been doing this all along, over the past few years, but the truth is, like most moms of young children who are also working outside of the home, most of my time was spent keeping the balls of everyone's needs at home and at work juggling in the air. The juggling was nonstop and if I got a moment to put a ball or two down and take time for myself, I preferred taking a coffee break or sitting on my ass and watching TV.

The walking/yoga/weights is part of my big paradigm shift that has come about since getting the breast cancer diagnosis, which forced me to stop juggling and just watch the balls fall crashing to the earth.

If it was as simple as "make time for yourself," all moms of young children would figure out a graceful way to do that. My experience is that I've needed to explore deeper layers of what has stopped me from living a life of optimal wellness. I've needed to unclutter my emotions the same way I need to unclutter my house and unclutter my time.

I know that I was on a path of doing this before the diagnosis; I've been striving for balance and wellness for some time. But the urgency of my diagnosis forced me onto a steep learning curve that I've happily embraced.

Not that I wake up to a life of zen, clean balance; not at all. I wake up to June whining about me not washing her favorite bathing suit and George rejecting the gluten free muffins that he absolutely loved two weeks ago and dirty dishes in the sink and a shitload of things to accomplish at work. Nothing external has shifted. But my perception of it, my reaction to it, my awareness of what triggers my stress, my ability to breath through it, my focus on the big picture

has transformed my life into a much happier, healthier one, even if my zen garden is deeply buried under layers of Disney Princess and Spiderman shit.
***
5 weeks of radiation to go and 5 weeks until George starts kindergarden and I can't help but thinking about how this new chapter of my life is intersecting with this new chapter of his. His going to kindergarden frees my time and energy in a way that will allow for me to focus differently on my new awareness of wellness.

I am so happy that we found a great kindergarden class for him at the public school and that we will walk just 1/2 block each morning to get there. I am so happy about all of the progress he's made in preschool and with the RDI cognitive therapy that we are doing at home.

But I get really teary when I think too much about him going to kindergarden. As much as I know the space and separation is neccessary for both of us to grow, I guess I am not quite ready to let go of my baby. Even though he's gone to preschool for full days of mornings and afternoons, this coming separation still feels hard. The acknowledgement of time passing, of him being ready to enter that big elementary school; I'm struggling with it.

Maybe there is still some goodbye that I need to say to the baby that he was. That baby that I can still see, smell and feel so vividly from his first ten days of life in the NICU to the miraculous day when we brought him home. Maybe there is some goodbye that I need to say to the busy toddler, to the three-year-old who struggled to acquire language. Maybe there is a goodbye I am holding back for the four and five-year-old boy who spent hours with me, learning skills like cutting and dressing and playing catch with a ball that other children just acquire naturally.

Maybe I need to hold those parts of George in a deep place in my heart so that I can make room for the six-year-old boy that he has become, ready for this new challenge, sunny, tall and strong. When he goes to school, I can walk down the block and watch him on the playground at recess, I will be able to walk by and look into his classroom. I know I will be able to do those things, but I will try to not.

The time when I heard the news that I was diagnosed

with breast cancer
feels so far away from me now. It was February, dark and snowy.

I was talking with my friend Jane on Saturday, telling her about the whole of my chemo experience and she said

I bet you feel like there's nothing you can't do now

and I said Exactly

which doesn't mean I don't have moments of getting stressed out or worried or nuts with my kids

but in those moments I can more easily come back to the bigger picture

and call on the tools I've been working on (deep breathing, noticing something of beauty around me) and move away from fear. And it's that ability, looking at fear and consiously neutralizing it, the fills me with a new sense of power and hope and excitement for my life.
***

Last week we had an incredible gift. We spent the week at a little house on Big Bass Lake in the Poconoe Mountains. My friend Steph came up for the weekend and our friends Katie and Jim and their precious 10-month-old baby Lila who live in Rochester came up, too. We hadn't seen Katie and Jim for four years. Friendship is so extraordinary, real friendship. It was so natural and laidback being together, even with the kids waking up early and having no water pressure for showers and some mornings overcast skies...we had time to cook and eat together and play games and stay up too late and talk and drink wine.

Being away from work for a week, with no email access, was so great for Fred, who has a new manager at the theater who is really competant and allowed him to leave knowing the theater was in good hands. It makes me happy to watch the way Fred is shifting in his life, the new ways he is taking care of his health and the way we are meeting each other in a more loving, appreciative place.

And for me, it was the stepping out of Elkins Park and away from not the home and the daily chores but more being out of the element where everything happened--the news, the shock, the surgery, the blood, the chemo, the metallic taste, the piles of shit I had no energy to deal with, being away from Fox Chase Cancer Center, that was it for me.

I'm done with that identity, being someone in crisis, someone ill, someone who needs help. I just want to retreat from it and sink into the new ways I am transforming

and I want to quietly emerge
as the woman

I want to be.

And while I was away I would think people see me and they don't know about the cancer
I'm just a 38-year-old woman stopping at a road side fruit stand to look at the tomatoes, look at the corn. And then my eye would catch the rear view mirror pulling into the fruit stand and I would see my bald head covered with a scarf and remember

it all

not with a feeling of shame in any way, or sadness

but in my mind, I'm free of it, moving on, done.
***

And I am back home now. I have 6 weeks of radiation to start on Monday. It feels like more of an inconvenience than anything else.

But when I go there, when I'm under the machine, my plan is to use that time, to set a clear intention,

to imagine the rays that are healing rays

helping me transform.

My chemo is done

and this last one went smooth, baby, smooth.

It is done.
And I feel really well,
light, happy

at moments I wonder
what did I learn from all this?
what is going to change in my life this year?
what is going to open, what will close?

and at other moments
I don't have the need
to analyze "what all of this meant"

I'm digging that place

because why should I bother
with the tiring circle of meaning making
when the truth of my life is
it's early July
the tomato plants in my garden are tall
the tomatoes are fat and green

George is jumping in the swimming pool at camp
and learning to swim
and June is
June is
soaking up everything there is under the sun

and Fred and I are very grounded together,
very in love

and my friend Sheila who lives in Chicago
came to visit,
the day we spent together
was this phenomenal day

it came to an end, my chemo
July is here
we are eating watermelon
with the windows open
a cross breeze blowing
through this old house

that needs some fixing
that Fred and I love so much
and have worked so hard to make
our home.

What does it all mean
seems pointless right now
that game, that analysis

it all means, I'm here
in this moment, that is
here, then gone.

only one more round of chemo to go!

This thought kept me going all week. It's been a long week. This was my shittiest reaction to the chemo. I won't share all of the details but will just try to sum it up by saying that a low point included throwing up all over my library book about Indian independence as seen through the eyes of a Brahmin widow.

But I only have one round of chemo left, I only have one round of chemo left...

(getting the chemo, still fun. My friend Julianne came with me to this one and highlights included sharing our hysteria watching Wanda Sykes from the Press Club dinner on her laptop during the infusion. chemo has been really excellent for extended girlfriend time, especially when Fox Chase runs so damned late.)

Leaving this week, I am affirming two things:

1) I have an amazing group of girlfriends (who not only got to chemo with me but this week did stuff like pick up the thousand of Thomas trains off of George's carpet and vacuum the crumbs, yikes!)

2) I only have one round of chemo left, I Only have one round of chemo left!
****

George was in between school and camp this week and I had my babysitter around but spent every morning when I had the most energy doing something special (but very laidback) with him. A few mornings, we took walk in Valley Green, a park taht is part of the Fairmount Park system here in Philadelphia.

I've been taking George to Valley Green, one of my favorite places in the universe, since he was a baby. There are big open trails and we can walk together and there are no cars so I am really relaxed about not holding hands and as George gets older he does an amazing job of going ahead of me, then stopping, looking at me and waiting for me to catch up.

We took stale matzah to feed the ducks and then walked on and George found a new trail, steep, covered in rocks. We went up pretty high and stopped at a little waterfall. I started thinking, what an awesome waterfall, it looks so zen, who designed the rocks in just that formation...and then I caught myself...like, yeah, this is it, this is nature--

and being in valley Green with George, where we can walk under the tallest trees and discover new paths and the simplest, most elegant, most tranquil little waterfalls, we connect easily and deeply and words are inessential.

And I was walking back, I was thinking about how light and emptied out I felt from our walk and how the oxygen we breathed in from those old, strong, vibrant trees shifted both of our energies

and how God is a mystery

and how I believe the mystery of God is deeper and more beautiful than any tree or waterfall

but the trees and waterfalls give us an idea

and the mystery of God is within me (within everyone)

and it is stronger than the worst things that happen to us.

I don't know what George was thinking, but he was chanting in a pretty clear voice, "We feed the ducks, we feed the ducks..."
****
I was cleaning a bit of mess from my desk (not actually cleaning, let's say "shifting" some papers around)a few days ago, and I found a "to do" list that must have been from before I found the lump, maybe late January, early February. I read it, bewildered. After I found the lump, basically all of these things fell off my radar screen.

I didn't know what to do with it. Should I start doing these things? I mean, I hadn't done them in 5 months, and despite being in treatment for breast cancer, my life is pretty balanced and just good right now.

I read it again, crumpled it in a ball and tossed it in the trash. Just reading it filled me with anxiety, the way I had written the list, the fervor of the handwriting, looked like a note from a madwoman. How was I supposed to do all of those things? A lot of them concerned making calls and appointments related to George's kindergarden assignment.

I realized how much I have shifted emotionally and spiritually in these last months. I don't want to write those crazy lists anymore. I want to do what I can do in a day, and that's it. I want to keep making time to be with my girlfriends, my children, Fred, to laugh, to be in nature...these things I have prioritized and have managed to do and am still paying my bills and working and cooking and kind of cleaning my house--

but with a different energy, an energy that kind of internally feels and trusts the connection between people and allows events to unfold and has less need to control what happens

and out of this opening, coming from less fear, really beautiful things do keep happening.

Like for example, George is going to be in a very good kindergarden class at Myers Elementary, that is less than 1/2 block from our house, where I had thought there was no way possible there would be the support he needs.

But there is.

And I kind of did nothing about it, except

talk from my heart to Dr. Ferrare, the school psychologist who tested George,

and from there

everything unfolded.
****
One chemo left (whoo-hoo!), one chemo left...

My birthday was really beautiful;

I am grateful and happy to be 38.

I celebrated with friends and with my children and with a special dinner out with Fred. Sunday was a gorgeous sunny day after a really rainy week. I've been doing a series of sun salutations most mornings and my yoga instructor gave me the teaching of inhaling the sun's rays into my heart chakra and exhaling my energy back to the sun. Inhaling and exhaling a continuous cycle of ten sun salutations opens me up and Sunday when I woke up (late at 8AM because Fred got up early with the kids)I felt the sun coming through the window into my room, and deeper into my being, into my core.

In the morning we walked to a little arts festival down the street and I stood in line with June so she could go on the moon bounce. June loves jumping on a moon bounce probably more than anything else in the world right now and that's saying a lot, because she's just like mom in that she has quite a lot of passions. It was hot out and we did wait a while and after she got her turn to bounce like crazy for five minutes, she asked me if she could get in line again. We did. Another parent told me I have the patience of a saint and I laughed.

It isn't patience, exactly. It's more a sense of deep presence that's come to life in me more and more. The truth is, it was a beautiful sunny day, it was my birthday, I was overwhelmed with gratitude for my life, and there was really no where else on earth I would have wanted to be besides standing in line with my daughter so she could bounce on the moon bounce again. What would have been more important, more urgent

than to see her, 3 and 3 quarters years old, jumping, suspended, weightless, then crashing into the earth full of laughter?

It is important for me to cultivate a sense of joy in my children. They actually don't need much help from me, beyond me stepping out of their way. I mean this truth sincerely; I think it is one of my most important jobs as a parent. To give them room to experience joy--

because going through these last hard months, I am overwhelmingly thankful for my passions, for my deep desire to be alive, for my ability to take in joy from things small and big; reading a psalm or a poem, doing a sun salutation, talking to a friend, watching "The Office" with Fred, teaching, hanging out with my family, taking walks, buying groceries, dancing, listening to my favorite songs again and again. All of these things fill me with joy if I am present and open to them and going through life joyfully, aware makes the hard things, which are natural and inevitable, easier to bear.

So standing in line to let Miss June jump for joy made me joyful and I also hope was an investment, that she should grow to have an open heart and spirit (like mom) which will help her live deep.

I'm exhaling

and grateful to be sitting at my computer; my second chemo treatment was one week ago today. And it was not bad. Much better than the first one actually. I've been more tired than I normally would be this week, my stomach isn't feeling exactly "normal", but otherwise, nothing major to report. I made room to get the rest that I needed and now I'm feeling much more well again. Also, I had my acupuncture treatment the day of the chemo, whereas last time I had it a few days later, and I think that made a world of difference.

And I started doing yoga again and in the week before chemo had done 3 classes (including being part of Yoga Unites for Living Beyond Breast Cancer, which was a totally amazing class on the Art Museum Steps)and my body is awakening in a new way by getting back to yoga. I haven't done a class since doing pre-natal yoga when I was pregnant with George seven years ago (!) and creating the space in my life for it is completely restorative in itself.

And I knew what to expect with the chemo this time, so I didn't go in anxious and end up getting completely emotionally drained. My parents came down and were with me for chemo and we passed the time having a lot of laughs (I know what you're thinking, Mom...)and enjoyed our visit together.

I am half-way done with my chemo treatments. I am used to wearing scarves now. It's all right.
***
For Shavuot, which began last night at sundown, my synagogue holds an all-night teaching, which is a traditional way to commemorate the giving of the Torah to the Jewish people. Rabbi Linda gave me the earliest spot so that I could teach and then go home and go to bed.

It was an honor to be there and an honor to teach. A few weeks ago, I wasn't sure that I would be able to teach since it was the week after chemo. Then I got an inspiration. One of the things that I am doing at the synagogue is finding ways to create more inclusive learning for children like George who learn differently. So I decided to do a teaching illuminating Jewish texts that address teaching (as it says in Proverbs) "each child according to his ways" and also a contemporary text by a high school student named Jacob Artson, who has autism and is non verbal and communicates through writing. His writing about his experience is breathtaking and anyone who wants to read it should send me a comment and I'll send it to you.

So as I was driving over to the shul, I had this sudden and profound awareness that tonight I was going to formally teach George's "torah" for the first time. That I was presenting not only as an educator but as a mother who has experienced first hand the neurological challenges that my child faces in basic communication and how that impacts his entire life

and how George's torah, the teaching that I have learned from him in the last few years and that I want to share with the world comes from a text called Pirke Avot (Ethics of the Fathers), 4:20:

Do not look at the container, rather what is inside of it."

and that is George's Torah because my God, knowing George authentically means seeing so much more than what often meets the eye, especially when his sensory system is discombobulated and his body is working disconnected from his mind, which when you have a chance to observe and interact with is unique and aware and just plain working

and George's Torah, as it has applied to me, has meant that my heart has broken a thousand times and opened up a thousand times to become something deeper and more present and more loving and more resilient

so that when I call my blog which thank you for reading

Hope is the thing with feathers

I mean that is how I am living my life

every f--ing day

and George's Torah

has made me the resilient person

that I am

who can just kind of get through tough shit, like breast cancer.

So I am really inspired and thankful that I shared that teaching last night and my vision though still kind of foggy at the moment is that I will grow and share this teaching

and that more people in the world will look past the container when they meet a person who is neurologically challenged or even better, be conscious of lookinmg past the container any time you meet "the other"

and I don't mean this is easy stuff at all, it's not. But that makes the this Torah more sacred to me.

Amen.

This week,

I have had my energy back and LOVED it

am grateful to God

losing my hair

hungry and eating

weeding the weeds between my flowers

did a kick-ass private yoga class

had some beautiful conversations

wrote the first lesson for a curriculum I am developing this summer

danced to Elvis

singing Bettle Midler's "The Rose" in the car (really)

had one shitty afternoon where I felt the world was caving in on me

let it the f--- go

dreamed of something I really want to write and started to outline it

ignored an email from someone whose head is up her ass

am wearing a pretty black silk scarf or

a snazzy purple sequined ball cap from my mom

am going to go down now and settle on the couch

to watch the final Grey's Anatomy

which is okay because Issy's story isn't my story

My story is my story.

love to all...

PS:

There was some strange grammar in last night's post, I guess we'll see more of that, like I meant to write "big and little" not "small and little", but whatever, I am a happily recovering perfectionist who woke up today with much more energy.

And I remembered more of things that I so, so appreciate for my list:

one of you gave me a gift card to IHOP which was perfect back when I loved eating; one of you sent me guided imagery cds to get me through surgery and treatment; one of you gave me all of your books on illness and healing including Bernie Siegal and Norman Cousins who inspire me beyond belief.

One of you gave me beautiful real wigs that fit me perfectly and look really great. One of you lent me her video ipod to take to chemo.

I think I'll remember more things later. The kids are happily at preschool now, I meant to take a picture of them before we left but I forgot so I'll describe them here:

George got a great haircut Sunday (Go Fred!) and looks like a little Beatle or Prince Valiant and his big brown eyes are smiling and he's wearing his favorite green Eagles t-shirt for the last time because he's just too tall for it. And Junie declared she is a princess, wearing Sydra's dress with fairy princesses on it that Carra dropped off last night, and her hair up in a "hair ribbon" which she let me do for the first time.

The house is quiet which I am relishing and even though my to-do list has maybe 10,000 things on it, I'm not going to actually do any of them, I'm just going to eat some fruit.

Tonight's the first night since my chemo last Friday

that I feel up to writing, and I'm grateful for that. I'm not going to write much about the experience of getting the chemo or my side effects, except to say that the anxiety of not knowing how the chemo would be was much, much worse than how it's been.

If you're one of my girlfriends and we're out for drinks some time, I'll share the subject of "Chemo and Your Period" which has really been its own frightening adventure, but I'll also understand if you need to quickly change subjects.

I guess I will write a little about the week, since I haven't had the energy to pick up the phone or answer calls: I've just had very little energy. Like when you feel a flu coming on, but it's not quite there. Sunday I did feel actual flu-ish for a while, then Monday morning I had acupuncture and it really helped ease the toxicity out of my body. Then Tuesday--today I've had sort of normal mornings of low energy and by afternoon sometime (3-5PM), I just want to lie down and fall asleep watching Oprah.

But now it's almost 7PM and I'm feeling okay, so my sense is that the "bad week" is nearly over and I'll get to have two more normal weeks before the cycle starts again on May 22. I'm 1/4 way through my treatments; 1 down, 3 to go.

And I'm honestly trying not to get down about feeling drained because I'd prefer to focus on what the chemo is doing in my body: its job. Killing any stray cancer cells.

And not to mention the sheer gratitude I feel to the doctors (Western and Traditional Chinese), researchers, scientists, patients, teachers...who have made it possible for me to get a chemo infusion, walk away from it drained but not incapacitated, and rid my body of cancer.
****
Gratitude. There have been moments during all this breast cancer mess that I've been overwhelmed by feelings of it.

Like last Thursday night, the eve before my chemo. Fred was upstairs giving the kids a bath around 6:30PM and I went downstairs to wait for my friend Amy who was driving down from the Poconoes to go to chemo with me at 7AM in the morning (oh yeah, we showed up at Fox Chase at 7AM but my chemo didn't actually happen until 1PM...that's another story to share while drinking).

I was in the kitchen and walked into the mudroom to put some groceries in the pantry. Out my back window, I saw my brother-in-law Greg in the back of the yard. I went out to see what he was up to.

He was planting me a garden, with romaine, peppers and tomatoes. My victory garden, he said. There aren't words for how I felt when I saw him doing that. He knew I wanted to put in a garden this summer and his thoughtful surprise delighted me beyond belief. Anytime I've been a little sad this week, I do think about my garden and Greg surprising me and how the kids can watch the vegetables grow and how we'll pick them and chop the tomatoes which George will want to eat as is and how I'll show them how to mix them into a salad, our fresh vegetables with just a little olive oil and maybe lemon and for sure some salt.

I stood chatting with Greg as he turned over the ground for my victory garden and the sun started setting and air was pure perfect springtime, the last April night, and I noticed how the trees outside of my back fence stretch into the night sky, making a sort of canopy.

Amy got lost once she got off 309 so we stood there, waiting for her for a while, and my anxiety about the next day fell off me quite a bit, settling deep into the earth.
****

And there are so many more amazing things, small and little, that everyone's done for me since I found the lump, had surgery, waited for chemo and started chemo. I'm going to try and list them now and I am sure I'll forget a lot of things, so if you have done something to help me and I don't acknowledge it, please chalk it up to chemo brain.

Some of you have given us money for babysitters. Some of you have given us money for house cleaners. Some of you have made wonderful meals for us and some of you have given us Whole Foods cards. Some of you have watched the kids for us, some of you have traveled to watch the kids for us. Some of you came to surgery with me. Some of you came to chemo with me. Some of you came to my healing and circle and hundreds of you have prayed for me.

Some of you gave me a red ribbon for my wrist, some of you gave me cards with mishaberach blessings, some of you have made me inspiring slideshows I can watch again and again on my computer. Some of you have burned CDs for me and some of you have bought CDs for me and all of the music has lifted me at moments when I can't connect with language but only want sound.

Some of you have sent me flowers, which I always love, some of you have given me lavendar bath and soap and lotion and salts, which I always love. Some of you have given me pretty clothes and one of you ordered me the Obama Pajamas ("Ojamas") that I had been longing for (and which fit perfectly).

Some of you came out for drinks with me and some of you met me for coffee. Some of you talked to me on the phone any time of day and there were lots of conversations where it was all about me and that's not how I usually roll, so I'd like to acknowledge that.

Some of you sent me jokes, and really, I still need them so keep them coming. Some of you wrote me hilarious memories of us from 20+ years ago (keep them coming too). Some of you sent me uplifting notes on my Facebook wall, some of you caught me online and we chatted a bit.

One of you, my sister Julie is walking in the Susan G Komen walk in my honor, this Sunday.

It is all quite overwhelming to list.

This is the list that has been in my mind this week, all of this giving that is growing deep in my victory garden.
****
Okay, one more side effect: I can't really taste anything. It started Sunday, my tongue started getting white and numb. For a gal who like to eat, this sensation has been really strange.

I make my coffee every morning but I don't actually drink it; I take a few sips and throw it down the sink. I make some ginger tea and that goes down better.

I eat fruit to help wash out the toxins and mostly bland,light stuff...clear soup is good.

What I feel eating this way is actually an incredible cleansing. It's a diet that I had always hoped to try for 3-4 days here, 3-4 days there but frankly never had the discipline to pull off. The caffeine withdrawl alone seemed impossible for me (Confession: I am a Yom Kippur coffee drinker. So there).

Without the caffeine and adrenaline that normally runs through my body, I felt a kind of evenness and calm come through me and a mental clarity as well. I haven't been able to push myself to do things, to charge that adrenaline, and so it just staid at rest.

So this is both an unwelcome side effect (every few hours I play an esoteric game with my appetite, like imagine a glass of merlot and a cannoli in front of me and imagine the sensation of drinking/eating them so clearly that I wonder if I could actually taste something but then a ritz cracker still makes me gag...)but also a welcome effect: this steadiness, calm and clarity is something I'm embracing and would like to hold onto, even when I'm tasting food (and drinking coffee)again.
****
So love to you, whoever you are and wherever you are, and really, don't worry that you haven't heard from me and know next week may be different but also I am really doing well at taking care of myself and getting through this wonderful chemo.

Today is the 17th day of counting the Omer...

and I haven't missed a day of counting yet. The counting of the Omer is an ancient ritual, used to mark the 49 days between Passover and Shavuot, between the seven weeks when sacrifices of barley were brought to the Temple in ancient Israel to the time when the first gleanings of wheat were ready to be offered. Hundreds of years later, the Kabbalists attached different mystical interpretations to each of the weeks of the Omer and to each day within each week.

Rabbi Yael offered me the idea of counting the Omer, of taking on this spiritual practice to meditate on each week's theme and notice what arises for me. Each night I say the blessing and count the day.

The Kabbalists gave this week the spiritual quality of "Tiferet" or beauty/grace. Rabbi Yael's kavannah (intention) for the week is to simply notice the beauty of the natural world around us.

That noticing has given me some relief this week. Noticing the symphony that is my little backyard, how my cherry blossoms became pink, then white, then fell off the tree, scattering the paved path where George rides his two-wheeler with training wheels and June zooms over the petals on her Barbie trike. Noticing the wild purple flowers creeping through our lawn, noticing the patches of daisies in the hedge in front of our porch. Noticing the hosta leaves sprout up, noticing my hyacinth bush getting ready for her bright shining solo to come next month.

The noticing has given me great relief, in fact. (Oh--at work, at Mishkan, there is a patch of garden near the front entrance where my Gan, Alef and Bet classes planted tulip bulbs last fall and they are MAGNIFICENT, blooming in every color.) And the counting has given me relief, too. There has probably never been a better time for me to count: I'm waiting for a lot of unknown things that have serious implications for my life.

I'm waiting to see how my body reacts to chemo (my first treatment is Friday). I'm waiting to see how my energy will be and how much help I'll need with the kids.

I'm waiting to get results of genetic testing that will tell me whether my cancer came from a genetic mutation and whether I will need more surgery or not.

This is some big waiting. And so an ancient practice feels right; I can imagine my ancestors watching their barley crops, noticing how the wheat crops were coming up. And knowing all of the things that could go wrong, the insects, the drought, the flooding, the random nature of nature.

And here I am, watching the crop that was called "cancer" that grew in the soil of my body (grows?), waiting to get rid of this threat for good, and I am counting and noticing because it gives me at least a little bit of dignity and even some control.
****
At the same time, I am waiting for George's kindergarden placement. It's a long story and feels too overwhelming for me to write much about at the moment, but if you have a child with any kind of "special needs," there's a lot of testing and evaluating and negotiating that goes into getting the child into the right kindergarden class.

Last Thursday morning, I had to take George to see Dr. Ferrare, a school psychologist from our local school district. He had observed George in his classroom a few weeks earlier. I had braced myself, I had put on my armor for that visit with Dr. Ferrare. Because of George's limited language skills, any testing is going to show how little cognitive ability he has.

We went into Dr. Ferrare's office. He was an older man, maybe 60. He brought some puzzles and legos out for George to play. He wanted to talk with me before he tested George.

"When I was watching George in the classroom," he said. "Something about him really moved me."

That was not what I expected a school psychologist who had been at this game for probably thirty-five years to say about George.

"He is really sweet, and intuitive," he continued. "He didn't know who I was, but I would catch him watching me watch him. He would look up and smile at me."

I nodded my head, blinking back tears. For me, having a child with special needs often means that people don't really see my child: they see behaviors. And they often judge those behaviors, over which George has little neurological control, very harshly.

Dr. Ferrare saw my child. We went on with George's testing; it went okay. George was able to point and identify some pictures. Dr. Ferrare made some notes.

"Testing is not going to tell us anything about George and who he can become," he told me.

It is something that I know deeply in my heart and yet at moments it's hard to not feel like I haven't pushed George as much as I should have; that if I had spent hours every day over the last few years drilling him on words, he could have identified all of the pictures. It doesn't make sense: at home, when I say, "George, let's put the dishes away," he goes to the dishwasher. But when Dr. Ferrare asked him to choose a picture of a dish from a bunch of pictures, he didn't point to anything close.

But I can't get caught up in doubt of myself or doubt of George. Dr. Ferrare observed George in his classroom and saw that he is sweet and intuitive and he wants to find a classroom where that will be honored in him.

I didn't get George to that reach that cognitive benchmark that I thought I would have by this age. But I am noticing and experiencing something more important that I have done:

I have not squashed George's beautiful spirit.

And I do believe that because of that, given the right setting and instruction, he can and will learn everything that he needs.

And that he is entering kindergarden knowing--I am sure he knows--in his "kishkas" that he is loved and celebrated unconditionally.

And that is something that I am working on noticing in and also giving to myself.
****
This is not an easy time in my life. Counting, waiting, chemo, kindergarden, Fred, Junie, work.
But it is at the same time a time of intense connection and beauty and grace; friends old and new reaching out to support me, a thousand prayers lifting me daily, colleagues at work standing beside me. Fred, George, June, flowers.
It is everything.
And if moments of beauty and grace, are opening in me and around me now amidst all of the nitty gritty hard stuff, I can barely anticipate how they will come, how I will feel them, how deeper to the earth my connections will be when I know, absolutely know,
that the cancer
is
gone.
****
Fyodor Dostoyevsky writes:
"A new philosophy, a way of life, is not given for nothing. It has to be paid dearly for and only acquired with much patience and great effort."

Tonight I will count the 18th night of the Omer and I will fall asleep waiting, anticipating, ready to dream.

Very literal, short entry...

because today I am just happy to be dealing with concrete things: getting my chemo scheduled, planning for child care, looking into the wig situation. A lovely woman I just met at Mishkan who recently finished her treatment is going to give me her $1,500 short brunette wig that looks an awful lot like my hair. What a blessing! But I need to get a blond one and also an auburn or burgundy one, too, so I'm asking around, checking out ebay, seeing how much my insurance will pay. If I have to go bald for goodness sake, I want to have a little fun with the situation. People at Mishkan know how I love to play around with wigs at Purim, so I'll just have to get into a Purim spirit every day until my hair grows back (have I told you I decided I'm going to let it grow long again after chemo? and if blond is popular, maybe I'll go blond?)

I'm having fun with the "breast cancer thang" when I can. Some days I'm not playful at all, I can have moments of being quite frightened, overwhelmed and down, but when I'm feeling like I am right now, able to let go and be non-attached, I'm 100% letting go and being non attached. And then I can do what I need to do and make plans and be efficient and have a bit of fun with it all.

And I am experiencing the way I've shifted and grown emotionally in just the last month or so. I am really getting good at just being concerned with my own feelings and knowing that everyone has the responsibility to take care of their own feelings: not my job. It sounds so simple and obvious, but I have often been a "caretaker" and am learning that that's just a role. I don't have to hold anyone else's emotional stuff and this realization is freeing. I have much more mental space to heal and to create and to live my life

like today dancing with Georgie in my dirty kitchen to Elvis Costello's "Pump it Up" and just making an ass of myself because it was so sweet and moving to watch how he anticipated me moving my arms up to the air each time the chorus came around and didn't take his eyes off me and was laughing hysterically and this is a child who is supposed to be difficult to engage.

So that's where I am now. Chemo begins May 1. I'm not scared about it; I'm ready.

(But know that tomorrow I may say the opposite of everything I'm expressing now...)

***Warning, warning!!!***My most metaphorical blog entry so far to date

I haven't cleaned for Passover at all and I'm not planning to. Frankly, I don't know where to begin.

I usually love this yearly ritual, scrubbing the vegetable drawer in my fridge with baking soda until it's white again, tying up bags of clothes we've outgrown over the winter to give away, dustbusting under my couch cushions and in the crevices between my floorboards. Opening the windows, airing the home, letting the spring air flow in.

Throwing out half-eaten boxes of crackers and gluten-free snacks I thought George would like but he didn't.

Rather than doing the physical work the holiday demands, I'm trusting in metaphors this year. I've been so spent physically the last few weeks, I'm cherishing my energy coming back to 100% in my body and I'm not willing to do anything to f--around with that at the moment. No one expects me to do much cooking or cleaning anyway and I'm embracing a slackerish acceptance of myself.

But living in metaphor is happening effortlessly and unconsciously. Each year at Passover, every Jew is supposed to feel like he/she is personally liberated from being a slave in Egpyt; each one of us is called to cross through a miraculously parted Sea, headed to the unknown place called Freedom.

And here I am leaving Egypt, in Hebrew "mitzraeem", a narrow place, and it's true, I really am. I am leaving the narrow place of fear and shock that I have been living in since the 16th of February when I was shaving and felt this weird little thing jutting out from under the pocket of my arm.

I'm leaving that narrow place, where I went from lab to doctor from doctor to lab with a nauseating numbness. I am leaving the place where I would stop driving my car and call a friend from my cell phone because I couldn't talk about it but needed to cry. I am leaving the place where I was waiting, for days on end, for biopsy results, for surgery results, for consults. I am leaving the place where I imagined my life without me in it.

I am leaving it, I am taking a step into the water of freedom, it feels cold and inviting, it stings the numbness out of me, it teases me to swim in, to swim out, to swim as far as I can. The sea is not parted; it is whole. You're alive, it calls. Alive.


It is the water of freedom and I am crossing through it in slow, metaphorical time. At moments, I see the shore on the other side, at moments, I only see water stretching ahead of me, meeting horizon.

I see the me, though, in my vision. I see the me there, in a way that I never could before. I see myself naked, bald, I see my scars. I see my strength like a light coming off the water, both within me and outside of me, coming up through the water and down from the sky. I feel myself being held by the water, I feel myself letting go, trusting the tide.

It is exhilarating, this effortless floating to freedom. See the woman, who was a slave, who is me, who is moving through the water now, for a moment she thought

she was losing everything

and now she is floating and laughing wildly, calling out to whomever can hear her

I lost everything! I lost everything!

and the water makes love to her

and pushes her

along.

June was given bunny

when she was 2 days old by our friends Pete and Diane. Bunny has been with her every day since, except for the couple of weeks we thought we lost her when she was really at the bottom of Fred's closet. When I say Bunny goes everywhere with June, I mean everywhere. At school, she stays in June's cubby while June works (Montessori school). There are some people close to us who are a bit afraid of the germs Bunny carries but in fact I am sure that June's immune system is all the stronger for having such a loved, filthy bunny by her side.

Bunny is now a character in June's pretend play; there was a big to-do this afternoon, in fact, when Bunny pushed June. They worked it out, with me playing the teacher. Right now, there are a number of other dolls/animals who travel with us through the day; this week it is a baby doll called "Baby Moses," a Precious Moments doll my mother-in-law gave June for Chanukah whom June either calls "Mariel" or "Moona" depending on her mood, and a stuffed mommy and baby elephant.

June surprises me every day with how complex her narratives are becoming; she weaves in conversations she's overheard, tv shows she watched weeks ago, accounts from school and home, fairy tales and bible stories. It's fascinating for me to experience the way her stories change and grow. It is hard not to see myself as a child in June; I remember from a very young age making up stories and acting them out. June has the dramatic flair, too, and will find just the perfect prop to act out her tale.

June has been giving Mariel/Moona and the elephants little bandages under their arms made out of my gauze tape. June likes to watch me shower and get dressed and she is very interested in the bandage under my arm. "Yeah, it's just there to help me heal," I tell her when she asks me for the thousandth time, "What you got there?" looking up at my incisions. "It feels so good that my body is strong and healing," I say.

Today I heard June say,"You're okay, Moona, you're healing now" as she put on Moona's bandage.

"Junie," I said, "God gave us amazing bodies that do so many amazing things!"

"Let's go on a treasure hunt," June said.
****
Georgie processes and expresses things differently. He is not like me or June at all in that language is so unnatural for him. Georgie's brain is naturally suited to doing visual-spatial tasks, like completing new jigsaw puzzles that I would struggle to do.

But being George's mom has taught me to look beyond how a child presents intellectually; George has taught me how to quiet my own mind so I can be really present with him without thinking a zillion thoughts a second. There is an openness, a spiritual energy that flows easily between George and me when I can do this (not always possible for me to do). He senses presence and I think appreciates it. He is sort of like a dog in his communication, in the way that he reacts to energy. You might be a total stranger but if you put out an open, loving vibe, George will cuddle up in your lap. If you emit tension or fear, he will avoid or test you.

So right now, George's processing of what is happening with Mom is all about the vibe I put out. Friday afternoon when I went completely mental (I must say) and screamed, George had a very good fight or flight response and totally tuned me out. June, in turn, put her little finger in my face and said "Mommy, you don't yelling at me!!!" and stamped upstairs.

These kids and our adventures together are pretty humbling for me. Saturday morning when I woke up feeling rested and regulated, George welcomed me with his beautiful smile and his smiling brown eyes. George forgives by his nature. He doesn't possess the ability to hold onto anger.

June had a new drama going on Saturday; it seemed Bunny was the hero Daddy who came home and gave crazy Moona mommy a glass of purple juice.
****
We are working with George doing a wonderful cognitive therapy called RDI that is allowing him to experience more nuanced emotions. But the process of learning things, like sharing joint attention with another person, that do not occur naturally in his specific neurological make-up is a long, slow process; a marathon, says Dr. Steven Gutstein, the creator of RDI, not a sprint.

In this particular moment in our lives, I don't think it's bad that he's missing some of the nuances of what is happening here.
****
June made up a treasure hunt. She drew a map (primarily scribbles), just like they have on the Dora show, she gathered an umbrella, her fairy wings, Bunny, George and me and said we had to cross the toll bridge. June's arms were full and George dashed away from her for a moment. I thought maybe he had had just enough of her for one day and was making his escape, but in fact, he ran to the table and picked up Moona, where June had left her, and then re-joined us.

"Oh thank you, Georgie!" June exclaimed. "You can carry Mariel."

June bossed us around for a while; the umbrella was to protect us from a snow storm and then we had to jump to an island and eat dinner made of legos. George carried Moona for June all the while.

I forget that I have no idea, really, what is happening inside his mind. Maybe he sees the bandages. Maybe he gets the whole thing.
****
People comment frequently about how good it is for George to have June around; how engaging she is, how she must help him with language. All of that is very, very true, but what it takes a more nuanced eye to see is how very good George is for June, as well. George supports June. George is kind to her. George is not a typical 6-year-old brother who might make fun of her, tease her, call her stupid and refuse to play her silly games. No, George validates her strength and her creativity and her gumption.

I think about how their unique gifts will help each other all of their lives and how June is growing up knowing that differences are part of life and how George is growing up seeing how to be your own self, proudly, always.
****
Peg Kessler, the visiting nurse who pulled the tube out of my arm just a little over a week ago, discharged me today. "You're terrific," she told me. "You've just done a terrific job here..." no doubt referring not only to the way that I didn't scream or actually pass out when she pulled the tube out and how I'm a good diabetic because my wound is healing so quickly but also to the general way she's seen me manage my health and home through this little ordeal.

Dammit, Peg! I thought. I have been doing a "terrific job" at this kind of thing my whole life, I am actually trying to let go and fuck up and not be so terrific here. I am trying to be honest and vulnerable and when I am, I know that it doesn't read as "terrific."
****
Maybe what I'm learning is how to navigate between worlds. How to trust my feelings are just feelings and to find safe places to let them out. How to pull myself together and out of my feelings when it's time to be present and mom. How to vent and scream when I need to without actually screaming at anybody (except maybe Bunny if June's not around?)How to make space for praying and healing and meditating even when there is no "illness" to remind me to do so.

I need a long life to work this all out and Fred assures me that I will have one because after all, I'm a "fighter" (Was that a fight? I thought that was a conversation.)

Amen.

Yesterday I did my first load of laundry

and it felt incredible to do (mom, when you're reading this, yes, Dr. Frankel said I could start doing chores like that and I'm not pushing it too much).

Today, I had a pretty "regular" day, taking the kids to school for the first time, spending the afternoon with them at the playground, getting dinner ready...and I felt weepy throughout.

Yesterday I was so ecstatic about not needing more surgery and about my appointment Wednesday with the oncologist who is recommending a very manageable round of chemo (4 treatments, spaced 3 weeks apart) and today I can't hold onto the details of anything and I hate looking at the pile of mail and bills that I haven't gone through getting bigger every day.

Yesterday I could feel all of the things I've learned from this strange experience. I was thinking about the conversation my friend Yitz and I had when he was talking about a Buddhist teaching and gave the example of an apple and how we know "this is an apple, it has seeds, a core, a peel." And how it's the same thing with life, we know "this is life"--people get diseases and life is hard. And how I was feeling that this is life, accepting that, I am just a soul here in a body and my body became ill

and I thanked God for my doctors and my husband and my family and my friends and my children and my synagogue and my home and my body's ability to heal so quickly.

And today I yelled at a lady at the playground and I yelled at my kids.

Yesterday I was okay with the fact that I can't be a supermom right now and I laughed when I found the Purim puppets strewn in with the Sesame Street toys in the toy box. I never got them back into the box marked "Purim" and now it's time to teach the kids about Passover and here Junie is still running around telling her version of the Purim story, how Haman was mean and then Nemo fish came to talk to the King and then the big bad wolf came and ate Queen Esther's Grandma. And yesterday I was thinking about how for Georgie I usually make special picture cards with all of the symbols of the holidays to teach him the stories and how I've just understandably fallen down on that job.

And today I feel worried that I can't do what I normally do to teach George and that what if he regresses in the next few months and that someone needs to show Fred how to organize all of the holiday stuff in case anything ever happened to me.

And yesterday I loved all of my meditation/affirmation cds about healing my body from cancer and the space I've made to listen to them. And right now I would prefer to drink a bottle of wine and not meditate at all. and I'm even annoyed by that word cancer

And tonight I am going to meditate and then I'm going to watch a movie with Fred and drink some wine and I bet tomorrow will be a day like

yesterday

and that every day (even the sucky ones) are a gift.

surgery is fun, but--

I was 100% ecstatic when Dr. Frankle called me this morning and said that my margins of error were clear and I would not need more surgery! Yeah!!! After two c-sections in three years and last Tuesday's adventure just three years after the last c-section, I'm officially announcing that I am done with surgery.
(Incidentally, Dr. Frankle shared that of the thirteen lymph nodes he removed, only one came back cancerous. This was good news! And surprising, since Fred told me that Dr. Frankle told him that he had removed five lymph nodes during my surgery.)

((There are several theories floating around about this small confusion: 1) Dr. Frankle (a surgeon of 35+ years) told Fred the wrong number of lymph nodes that he removed; 2) Fred was understandably exhausted and confused after my surgery and misheard Dr. Frankle; 3)Fred heard Dr. Frankle but told me 5 rather than 13 so I wouldn't be worried all week; 4) Both Fred and Dr. Frankle were stoned out of their minds during my surgery. Since Fred denies theory number 3, we can take that one off the table, and since Fred has never smoked a joint in his life and Dr. Frankle's eyes looked clear last Tuesday, we can also remove number 4. Note, I am simply reporting, not editorializing, about this news.))

5 lymph nodes, 13, it's all water under the bridge--they were clear except for that one little pest! My arm probably has been healing faster because I was thinking only 5 nodes were removed. The body/mind thing is powerful and I'm more interested in it than ever. Another example from this week: I asked Fred to bring up my bottle of percoset before going to bed the other night; he did, I took it, the pain went away, I fell asleep. Funny thing was in the morning when I went to take my thyroid medicine, I couldn't find it. Here it was on my bedroom dresser--Fred had brought it up it last night, thinking it was percoset. Hhhhhmmm.

But we won't put Fred on another trial. Everyone read the last post and knows I love him. The guy is doing an amazing job of keeping things running in the house--and truth to tell, maybe one "detail" person is plenty in a relationship. On to other news...

So I was sitting outside with my kids a few hours ago and I suddenly realized that this one old close friend of mine hasn't gotten in touch with me. I've sent her a few emails and I started thinking maybe she hasn't gotten them, maybe she doesn't know. We were really close at one point in our lives, during my mid-twenties when I was doing theater in Chicago; she directed my most successful one-woman show. Has she not read my emails or is she actually ignoring me?
I started thinking. A lot of people around me at that time of my life thought she was pretty superficial, but I never did. I started feeling really disappointed and sad at the idea that she knew what I was going through and hasn't reached out in anyway. And

just then as I was getting all caught up in whether she knew or not and whether she was superficial or not and whether I was stupid for not seeing it before or not and whether I should give her a call or not, the phone rang and it was someone I was so happy to hear from. My friend Amy, from high school. We hadn't talked for such a long, long time. Her sister is on facebook with me and told Ame what was going on.

Ame is a science person; she works as a veterinarian. She asked me how I was doing and it was perfect because I'd been developing this material in my mind all day and she was just an ideal person to share it with: I get breast cancer, right, and everyone around is so happy and confidant that I'll be cured and how it just makes me so f--ing pissed that all of the brilliant doctors and researchers have been working in oncology while for the last 27 years that I've been living with Type 1 diabetes apparantly all of the morons go into endocrinology and can't figure out how to make a freakin artificial pancreas. I kept going with it--all the oncologists graduate from Johns Hopkins and Harvard and Penn and all the endos get their MDs from some school in the Caribbean and I had us both really, really laughing hysterically and I know I'm losing it in translation now but seriously, a side effect of getting this breast cancer diagnosis is that I'm seriously pissed off that they can cut away and chemo the hell out of the cancer but no one can figure out how to implant a few beta cells and get my pancreas to produce insulin again.

But it was funny when I told Amy that. Yeah, we laughed like hell about it and I was like, how did the most non-superficial person in the world, who gets my dark sense of humor and will enjoy these medical references, happen to call me just now? F-- the theater director. Amy literally sticks her hand up cows and horses' butts for a living. And she's damn good at it. That's the kind of friend I can talk to right now.

And I don't want to sound like my life has become a twisted version of "My Name is Earl," but there's been a lot of karma/coincidence stuff happening with me. Amy gets her breath from laughing at my shtick and she asks me if I've been visualizing myself as healthy.

Now you have to understand--if you don't know Ame--that the word "visualize" is not a word that I've ever heard come out of her mouth. Ame and I met on the school bus; I was in 6th grade, she was in 7th. We sat in a seat together, along with an annoying boy named Alan Riga who tried to push us against the window every afternoon. We bonded (Ame and I, not Alan.)Even then, she was the scientist and I was the artist. There was a lot of respect between us and a lot of yin/yang sympatico. We talked about Einstein. We grew up together. In high school, we drank together and went to Denny's late at night for onion rings and engaged in some petty acts of vandalism. Amy's father died of leukemia. It was the first funeral I ever went to where I saw an open casket. There was Mr. Platko, the nicest dad, the one who used to drive us to the mall, the one who was the star of his bowling league. And he was dead.

I went to theater school, Ame went to vet school. I never heard her say something like "visualize" before today.

"Yes, Ame, I am," I told her. And I have been. Twice a day, listening to a meditation/visualization/affirmation CD.

"That's good," she said. "You're going to beat this."

"Do you promise me?"

"Yes, Gab, I do."

"I'm a little worried about my immune system. First type 1 diabetes, graves's disease, now this. I don't want anymore."

"Well...we'll get it stronger. We'll figure it out. We'll get your immune system strong."

It was what I needed to hear at 5:30PM today when she called me. We made some plans for her to come down and hang with me during my chemo and we laughed about how lame it is that we are actually using chemo to carve out some girls time. But we are both busy moms and she is a busy vet and I am a busy writer/teacher/artsy lady.

"You are funny, Gab," she said before hanging up. "You are so f--ing funny."

Thank God I've got all of you guys who are reading this now around me because you know, like Ame, you are the real ones for me.

Oh yeah, one more thing I have to share about this "funny" thing...I've gotten a few cards from people who indicated how surprised/shocked they were to find out that someone as "funny" and "creative" as I am is dealing with cancer. I am serious. One person actually also included "adorable", that she was shocked that someone as "adorable" as me is dealing with this disease. So, I'm thinking that if being "funny" and "creative" and possibly also "adorable" prevented cancer, you would generally find more funny and creative (and some adorable)people around and maybe even the nightmare that was just the Bush administration would never have occurred.

So my tip is that if Hallmark doesn't make cards that say (cover), "Gee...sorry to hear you got cancer..." (inside)"I always thought you were so funny/creative/adorable. That sucks!" then probably that's not the most appropriate message to write in on a card to someone who in fact is funny and creative (not going to accept adorable)and did just get diagnosed with cancer. It's just a thought.

light and clouds

Friday was a shit day. (By the way, if you think every blog entry is going to be about spring flowers coming up, stop reading now). It began around 8AM when I went online to check my checking account and discovered that my work check, which goes in by direct deposit on the 20th of the month, wasn’t deposited. In eleven years of working at Mishkan, that has never happened. I took me a few hours of phone calls to figure out what happened. I’ll spare you the details but share that Wachovia sucks as a bank. My check was deposited in someone’s account in South Carolina who works at the Piggly Wiggly (not kidding). Mishkan, as an employer, and specifically Maria, our office manager and Sylvia, our bookkeeper, on the other hand do not suck in the least and because Maria and Sylvia did not want me to worry about a thing, they printed me a paper check and deposited into my account for me. (Friday, I meant to say, was a shit day with lots of blessings in it).
It was Fred’s 44th birthday. I knew that I couldn’t do a lot to help him celebrate. A few weeks ago, I got the idea that I could dedicate a “select-a-set” for him on WXPN. I emailed DJ Michaela Mijoun and wrote her all about our situation and picked out three love songs to dedicate to Fred on XPN for Friday morning March 20th, his birthday. Wednesday morning, my friend Marisol told me that her husband David heard my dedication to Fred—Michaela played it on Wednesday the 18th instead of Friday, the 20th. We missed it. I emailed her (still doped on percoset) about what happened and she explained no, the show wasn’t archived and no, she couldn’t replay on Friday because it was women’s music hour. Shit.
Fred didn’t care. He loved the idea of what I did, even if it was played on the wrong day and we missed it. I didn’t love the idea of it; I wanted it and I was pissed. Or maybe I should say the old me, the me of a month ago before this diagnosis, was pissed, and the new me, who is getting better at noticing my feelings and not being attached to them, noticed how pissed I was. And tried to let it go.
(Maybe I’ll mention now that I am recovering perfectionist and part of what has been very, very hard about this experience is that I don’t have the physical strength at the moment to manage things perfectly. There is a lot of mess in my life right now and I am being forced to just “be” with it).
So I couldn’t fix Fred’s birthday select-a-set and I hadn’t done any of the things I would have normally done to make his birthday special: make homemade cards with the kids, surprise him with a cake for breakfast. No, instead, I spent the morning dealing with Wachovia and then my visiting nurse, Peg. Peg is a kind, large woman who came to check my incision. When she was looking at the tube attached to my lymph node incision holding my draining blood, she accidentally pulled the whole thing out. It was the only time all week I thought I might pass out. But I didn’t. We took some deep breaths and called Dr. Frankle’s office. Of course, he was in surgery. We waited a while to see if he would call back, but he was still in surgery when Peg had to go on to her next appointment. So I sat there, with some gauze covering the incision, waiting for Dr. Frankle’s call.
On Tuesday, when I was waiting to go into surgery, Rabbi Yael was there with Fred and me. She sang my favorite psalms and shared some Torah with us. She talked about how God’s presence accompanied the Israelites when they were wandering in the desert and how it (I’m paraphrasing) sometimes appeared to the people as a light guiding the Mishkan and how sometimes, the light was gone and there was only a cloud around the Mishkan and how both were God, the light and the cloud. And that even when it feels like the clouds are over and around me, that is God, too. This was just before surgery when she shared this teaching and I was as vulnerable as I could be then, weak and dehydrated, with no water, food or coffee for 15 hours, hooked up to the IV, with Dr. Frankle’s initials penned onto my breast with his marker. But I understood Yael’s teaching very clearly and as cloudly as I felt, I knew God was with me.
And sort of the same on Friday. Dr. Frankle called back and said not to come in, just keep the incision clean and covered with gauze. My arm hurt a lot less with the tube and bottle out, so Peg Kessler did me a favor with her overeager reach. Fred brought the kids home from school and went back to work. My friend Ellyn came over to play with them. They were both really happy to be with her, since it had clearly been a long week for all of us and June especially did not appreciate a tired, grouchy mommy.
Fred got home from work and I was trying to feed the kids (Ellyn just left) because Sandra was going to watch them so Fred and I could go out for his birthday dinner. Of course, neither of them liked what was on their dinner plates and were acting whiny and fussy. Fred was looking through the mail while they fussed. I hit my breaking point. I didn’t have any reserve or energy to deal with the dinner situation or to him not being tuned in to the fact that I really needed his help in that moment.
If it had been the “me” of a month ago, I would have thrown the spatula across the room, aiming just a few inches away from Fred’s butt. I would have called him an asshole and angrily pulled something else out of the fridge for the kids. But I didn’t. I noticed what I was feeling. I said to Fred, “ I had a hard fucking day. I have no energy. Please give the kids dinner,” and I went upstairs and lay on our guest bed (well, futon) for fifteen minutes.
I could hear that downstairs everyone liked what Daddy was fixing. I went to the bathroom to attempt to make myself look like a human being since it was my first time really out in public since the surgery. I put on some lipstick and mascara and sat on the toilet and let myself have a long cry (post-mascara application—brilliant!).
I really hadn’t had a cry like that all week. Fred brought the kids upstairs and got them in pajamas and put on Noggin (please don’t ask me how much Noggin June has watched this week). He came into the bathroom. He held me for a long time. I apologized that his birthday was a shit birthday, but he assured me that it wasn’t. He said some things that were very intimate and that are between the two of us, but I will share that I think he likes me better weepy than throwing spatulas.
I like me better, too, and I’m frankly embarrassed that it took me this illness to realize the ridiculousness my pretense of being in control of all things at all times and not seeing all of the blessings in the clouds, but this is the truth of what is happening. I should say, the old me would feel embarrassed by all of this, while the new me is trying to feel compassion for the old spatula-throwing me, because clearly she/I needed/need some compassion and forgiveness…we all do…and I can give it easily to others but it is fucking hard to just be and give it to myself.
Fred and I went to dinner at Brigid’s. It’s a little pub in the Fairmount neighborhood of Philly, where Fred used to live when we first met. In fact, we went there on our first date. It was a little hard to be there and not think back to that night and of the innocence between the two of us and the hope and the attraction and the way I felt like I could tell him anything and he could hold it and I did and it was true.
I got a little weepy a few times during dinner but I knew it was okay and I let myself feel what I was feeling and here, sitting with this man I love ten years later in the pub where we had our first date, I knew that our love and intimacy had reached a new level and that the cloudiness of this hard month was turning to light for me, for us, for our family and future.
And I am so thankful for that.
And PS, Fred has just the kind of waitress he likes, the kind who is just really good at her job and efficient and friendly but not at all chatty and doesn’t stick around too long and notices if your wife is weepy and gives you your space. And for someone in his industry, this was important to make his meal a great one, so thank you, Universe, for that blessing.
And PPS, I gave my brother Jon the songs I had meant to play for Fred on XPN plus 11 more and he got them on itunes and burned them on a disk and sent them priority mail and it came and Fred got it yesterday, the day after his birthday, which was just perfect enough.

March 19, 2009

It was raining most of the day but it stopped around 3PM. George really needed to get out and let off steam. I realized that I hadn't had any fresh air since I came home from the hospital at 6:30PM on Tuesday and that was just the two minutes from the car into the house. We got on our socks, shoes and jackets. June was giving her mermaid a bath and refused to put pants on and luckily with Sandra here, I could let her just keep doing what she was doing. George and I went out the front door and walked down Union Avenue towards Ashbourne. Everywhere I looked were little buds coming out of the ground.

It was great to see them coming up on this gray, rainy day with me groggy from percoset. Spring flowers coming up, just the green part now, I can't tell what will be tulips, what will be daffodils. George and I walked hand in hand, down Ashbourne and then left up Mill Road.

So many afternoons we've taken this walk together, George and me. Sometimes I count in rhythm with him, sometimes we sing the 'ABCs', sometimes I point out interesting things. Today we just walked in silence and it was precious for me, to be out of the house, to be holding his hand, to see what a big, beautiful boy he is, to notice the buds coming up. We got to a big house at the end of Mill Road. George looked up at me. I knew he wanted to climb the stairs to the top of the house.

"Go ahead," I said and he climbed up. It was a quiet hour. He reached the top. I said, "Come down now, Georgie," and he did and we turned up Glenwood Avenue together.

It has been years of work together that have created these smooth moments of our shared communication. George is 6 now and because of his apraxia, he is still learning how to talk.

But he knows how to communicate, better than many people around me. When I came home from the hospital Tuesday, I sat down on the couch and he cuddled up against me. He didn't leave my side. Fred tried to take him and June up for a bath and he wouldn't go. He snuggled against my left side and fell asleep there, nestling like a baby.

We made it back to Union Avenue and stopped in front of our house. I stood in awe looking at all of the bulbs coming up in my lawn. How did they get there? Had I planted them last fall and couldn't remember? Had they all come up last spring but I don't remember that? All through the yard--on the side of the house--in the back--there are flowers coming up.


I don't remember planting them. Was my fall such a busy blur that I've just spaced it out?

I'm honestly not sure but my backyard is incredibly full and in a week or two, I'll be able to see what are tulips, what are daffodils, what are something else. In a week or two, I'll know if I'm getting chemo or radiation and when it will all begin.

There is something so amazing about this moment in time, being just on the cusp of spring's awakening, how the whole world changes from the dead of winter into a great big garden. And how my life is strangely full and wondrous at this moment, the loving pouring out from everywhere, bursting up from teh earth like bulbs I can't remember ever planting.

Here I am standing in the garden on the dreariest day, springtime pangs erupting in my heart.