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.