I’ve had such a positive week, I’ve been looking forward to sharing it all. The kids are all settled in their summer camps, even Oriel Tzedek, who put up a good fight about going for a few days. It was a good test for the positive thinking machinery here, and when we applied positive thinking he cooperated beautifully, and when we didn’t, he made a huge stink. I think it took four adults and three hours to get him to go back on the second day. The third day was a dream. O.T. knew we were all aligned on him going to camp and there was going to be no hard time about it. And there wasn’t. I’m starting to see more and more where I’m standing in negative thinking, and the profound power the thoughts have. I’m also seeing it in the people around me. So, watch out negative thinkers!

I’ve been really enjoying spending down time with Mom. It’s nice that she’s not working now and we’ve been spending a lot of time together. She’s really taking good care of me, making sure I eat, that I sleep and that I get up and out every day. She’s good at up and out, a real big doer, but she’s also reminding me that I need to rest when my body tells me to, and not to feel guilty about it. I think I’ve finally given myself that permission to rest. And when I do, it’s so sweet!

One day this week I was driving around with Mom, keeping her company on her errands, and she was done, everything crossed off her to do list for the day. And it was early. We could do anything! But I was still getting dizzy every time I stood up, so my options were limited. And then I thought of something, and I knew that it would be good in so many ways for both of us, and I asked Mom if she would please knit me a hat. And she was so happy with that! She loves to knit. It relaxes her mucho. And I really want some hand knit hats. So, we drove to a cute little knitting store in Teaneck and she found a pattern for a funky cloche, and another for a fancy beret, and yarns in my favorite colors and the silkiest textures. And I found a very cool multicolor cotton yarn, and a super simple pattern for a cap, which I am going to knit myself. And it’s nice to knit in the sunshine with Mom. And now there’s always something to do! And it’s good to celebrate the bald.

I’ve been getting busy again. Tsvika is organizing all the footage for film editing and I’m gathering teams together to plan the big premiere.

SAVE THE DATE – The Evening of October 22, at Symphony Space on Broadway at 95th Street in Manhattan. There will be a wine and cheese reception at Symphony Space before the film. Whoo hoo!! Stay tuned for when tickets go on sale, which will be soon!!!! I’m so excited!

And I’m so excited about my new website! Adina’s awesome and when it’s done it’ll have everything in one spot – film, blog, guestbook, events, recipes and more! Tsvika and I have another film project in the works too. I’ll share more about that as things develop. It’s been really life giving to have big, fun projects to really get into, and now that my energy seems to be coming back, the projects have been really motivating me.

I haven’t had too many dizzy spells this week. I gave up the Fentonyl patches and went back to Percocet. The pain in my back has spread, and my hip hurts so much sometimes that I can’t walk. But the pain is nothing compared to the swimming in my head and the exhaustion that I’m not experiencing anymore. And the Percocet works better for the pain anyway. I just have to be careful to eat a substantial meal before taking it or I’m afraid I’ll end up on the bathroom floor for hours after. Sometimes I take Zoffran with the Percocet to try to avoid that nausea. Seems to be working! And my appetite is better, starting to want healthy things, like salad and fruit and WATER!!! Thank G-d. I really didn’t think I’d see things turn around, ever, but as soon as the turnaround started I dug into it and everything is looking up.

I’ve been having these intense whiffs of life lately, glimpses of exciting possibilities, places to see, things to do, people to connect with. Small things, experiences that I’m looking forward to, and it makes me want to live again. It’s that joy, a quiet, peaceful joy. And it’s totally steeped in gratitude. I’m so grateful for so much – especially for the chance connections that oftentimes end up profoundly changing the course of my day.

You want to hear about the miracles of the week? Here are a few….

I have a friend, an extremely talented, soulful solo pianist, and she moved to Israel a few years ago. And we lost touch and I’ve been looking all over for her for the past year. And I wanted to use her music for the film and for my website. And the other day I was on the phone confirming a meeting for the website design, which I’ve been putting off for months because I wasn’t feeling well, and we confirmed the meeting, and I checked my email, and I had a note from my musician friend in Israel, Shoshana Shoshana. She found me! And the timing couldn’t have been better. And she’s in the States for the Summer, and has tons of music for me to choose from, and I just thought that was so cool.

Then, I had a very important meeting with the head of the local Yeshiva K’tana to talk about sending three of my kids there in September. I imagined that this rabbi didn’t care for me too much after I started a renegade school on his turf ten years ago. I had no idea how the meeting would go. Well, it was the most amazing meeting! I didn’t want it to end. And he gave me so much chizuk! I’m still feeling empowered from our time together. Amazing how Hashem orchestrates things.

And here’s one more. I needed to make an appointment for a follow up MRI and I needed to bring the original 2 scans with me for the radiologist to compare. Well, the place where I had the MRI’s done went out of business. And my scans were out of business as well. That’s a problem. I had some films in an envelope that one of the doctors gave me, but I lost them. Alisa, Eeris and Yoni were ready for a serious search after I lit a candle, recited the segula for Rebbe Meir Baal HaNes, and gave tzeduka. Of course those films were found within minutes, but they were incomplete. I called Jacquie at Dr. Krug’s office, and I don’t know what she did, but an envelope showed up at my house that evening with disks of all my MRI’s. Now I have to be led to an open MRI. I’m not going through that anxiety again if I don’t have to!

Thank you for all the gifities! My kids love the beginner encyclopedia and they ate up all the unusual Israeli goodies! Thank you for the fresh baked challahs, the banana bread and the fresh cut flowers. Thank you for the hand knit doll and, the stuffed dog. Thank you for the really beautiful silver rings - they inspire me to "dream" and to have "courage" whenever I look at them.

Thank you Alisa and Eeris for coming to me from Manhattan to help with the details of the premiere. I think planning the event is going to be as much fun as attending! Especially if I let go of controlling everything. Yup. This is a big test, but so far so good. I may not have the most elegant way of handling myself, but at least I recognize when I’m doing it. I guess that Hashem wants this to be my new laboratory to practice letting go skills. Okay, I’m game. I’m sure it’ll be good for me in every way.

We just came out of Shabbos and it was so sweet. Mom went to “Frockaway” with Eliana to visit close friends, and Yoni and I were left with the rest of the gang. I was pretty nervous – Mom does a lot around here, especially on Shabbos. Well, it was great. Atara was with us for dinner and in the morning the three kids made their own plans to go to the Goldhars for lunch. It was pretty lively around here in the afternoon, our yard was full of Gershons and Goldhars, but everybody had a good time and when the party was over, everyone went to bed happy.

Sending much love and happy energy out there for everyone!

Yours,

Simcha Esther

I’ve been marveling at the way our bodies tell us when the tank is empty. Isn’t it amazing? My appetite seems to be talking to me again. Occasionally I’ll think of something I want to eat and I’ll get really excited. Like right now, I’m at Hackensack Hospital getting two more units of blood, and all of a sudden I wanted Poppy’s pizza. So I sent Mom off to get us some. And some salad full of savory stuff, like hearts of palm, and olives and feta cheese. And now my stomach is rumbling away in happy anticipation. For so long it was a mess of anxiety, and the thought, is this gonna make me throw up?

It’s been quite a couple of weeks! It flew by really. Just before Shabbos 2 weeks ago I was brushing my teeth and when I leaned over the sink I heard and felt a loud crack. Oh man! I went straight back to bed and Yoni caught Dr. Gejerman on his way home from shul. How lucky am I that my house is right on his way home every Shabbos night and day? Dr. G. asked how I was doing, and said that I should have turned the corner by now from the radiation fatigue and I noticed how that suggestion got in there and how I’ve been noticing daily improvements in my energy level ever since. He also said it was unlikely that I broke a rib from brushing my teeth. Coughing yes, brushing no. So, I loaded up on Tylenol and cough medicine, ‘cause every cough was agony! And Yoni made Kiddush and we all ate our challah and soup together in the bedroom.

My brother David came to visit on Sunday morning and I had a big breakfast of my favorite comfort food, Cream of Wheat with 2 fried eggs on top and everyone was keeping me company in my big bed. David and I were talking with the kids about our childhood family adventures. We had three boats over the years and every summer we used go up to Lake George for a week or two, with my aunts, uncles and cousins and we’d drive around in the boat all day with everyone and then come back to our little rented cottage and make dinner. I can still taste the Spaghetti and meatballs and antipasto platters! Well, that first boat of ours, an old beat up second hand thing, was aptly named, because early one morning we discovered “Tzurus”, still tied to the dock but completely sunk in the water! It’s a good thing all the aunts, uncles and cousins were with us. After standing around staring for a while, everyone grabbed a bucket and we started bailing out the water. The boat was nothing but trouble till we replaced it with a brand new model. Then we would go out to the little islands and rent a camping spot for a week at a time. Grandpa was so proud of his boats, always wiping them down while the rest of us swam around from innertubes tied to long ropes from the side of the boat. Those were good memories!

Oriel was so excited he had to call Grandpa right away and ask him what the old boat’s name was, but Grandpa’s pretty hard of hearing and the conversation didn’t get very far. Then my brother Michael called, and we talked about how fun it would be for everyone to get together again for a few days on Lake George this summer. We could rent a boat at Chic’s Marina and I think there’s even kosher food around there now! I started looking online at all those cheesy motel/cottage places that we used to rent from. Every summer was a new place. It was great seeing the online photos, all the cheap wood paneling and accordion doors brought me right back to my childhood.

When Ruchama came for her Shabbos visit two weeks ago I talked to her about how hard it is for me to be with all of my kids at the same time, how overwhelming they can be, scary really! She was totally sympathetic and I was able to let go of a lot of guilt about it. Then she rattled off a list of suggestions, things I could do with them that would be mutually enjoyable, things I could do right from bed. When Uncle David came the next morning I sent him out with the kids to Michael’s (the craft store) to pick up some beginner drawing materials and some arts and crafts projects I could do with them. David is quite a talented artist and it was great for the girls to each get a drawing lesson from him. It was so nice to watch them, sitting quietly on the bed, drawing away. This week we’ll start the little projects that I put away.

I made it through the closed MRI of my spine on 3 Ativan. I panicked at first, and the technician was mean, but I started to cry from the anxiety and she chilled out, and so did I. Meanwhile, I was experiencing excruciating leg pain all the way from my hips to my ankles. Probably a reaction to a new drug that I needed to take short term. I thought the MRI would be open. Good thing I brought the Ativan. I swallowed the third pill, screwed my eyes shut, and worked very hard to keep calming myself for the hour long test. Thank G-d for Ella. She stayed with me throughout the ordeal. When I got home I immediately fell into bed and into a deep sleep from all the leg pain management and MRI anxiety.

I couldn’t get out of bed the next day, and sent off a lot of email. That night was Miriam Sandler’s big concert and even though I was too tired to get out, she had the whole huge group of women saying Tehilim for me! Thank you ladies!!!!! Awesome!!!

On Wednesday I met with Dr. Krug, accompanied by Ella and Mom. Mom couldn’t get over how young Dr. Krug looks – she kept calling him the pipsqueak, and he laughed. He’s a year younger than me, but he looks 10 or 15 years younger than that, which must be hard for him, because he’s really somebody important there. He just laughed when I called him Doogie Howser. We’re developing a really nice patient/doctor relationship and we’re able to be candid like that more and more. He told me their was a tiny bit of growth in my lung, not clear about the lymph, and new spots on my back. Nothing new, nothing too scary, but it’s time to change drugs again. He put me on a drug that’s been around for a while, with less side effects than the abraxaine. Worst side effect is drops in blood levels. Nothing new there. And fatigue. Okay. Here we go, drug number 7. I received my first dose that day (even though my hemoglobin was only 7.1, we agreed I’d get a transfusion on Thursday to bring up the counts). It took only 30 minutes and we ordered food from Olympic Pita (actually has a new name) and I ate some lamb. Good for my blood.

I had the transfusion at Hackensack on Thursday and Mom came along. It’s been good for her to join me at my appointments now that school is out. I think she’s relieved to be included in everything and she’s been great! Really positive. Great Mom energy. Very healing.

I saw Dr. Altar again, after this crazy year, and it was good to talk to him. He’s been following my whole story, as has Dr. Gejerman, from Dr. Krug. Dr. Altar set up everything for the transfusion and the whole thing took about 9 hours, start to finish. And that was pretty fast. Sloan Kettering would have been even longer.

I had a number of dizzy spells, that I thought the new blood would eliminate, but they’re still happening. It’s scary. I’ll be sitting down, fine, then when I get up and walk a short distance I feel my head start to swim and I know that if I don’t sit down fast I’ll be on the floor. I actually did sink to the floor once, luckily I was in my own house. I have to figure out what this is about. My hemoglobin is great now, so that’s not it. I’m experimenting with the pain meds to see if it could be one of those. They’re not working so well for the pain anyway. We’ll see.

I’ve been less and less tired during the day, but the other night I fell asleep with 2 Tylenol in my hand and through the night I’d wake up from time to time and feel them there, think about taking them, and drift back off to sleep. I finally took them in the morning! Another night I fell asleep holding my cell phone to call Atara, who left for camp on Friday, and I woke up still holding the phone.

Naama is back from Israel getting her house in order so she can make aliyah and she spent last Shabbos with us. It was so nice and normal having her here! I hope we get to spent more good times together before she goes back. Batsheva and Eliana were with the Friedmans for Shabbos. They really enjoyed being together after being apart for a few years when all the kids went off to different schools. All the playdates have been really good for my kids and we are all feeling such a deep sense of gratitude for everyone in the community.

The kids are all settled in camp and I’m really enjoying the quiet here during the day, though I’ve been busy with my crazy medical schedule and what work I can get done in between appointments. I’m still having a hard time getting my act together in the morning, but I’m being gentle with myself, resting my body, letting go or urgency, and it makes a difference. I’ve been avoiding depressing thoughts, which thank G-d, is no longer so difficult. I’m getting excited again about life, my projects, the work I’m doing. Future projects. I’m feeling connected again to people. It’s all settling down and I am feeling a quiet comfort in the right now.

I think I’m learning how to relax and I’m finding that I don’t want to talk so much. I’ve been realizing how much I walk around reacting, controlling, afraid of losing control. I’ve been letting go and each time I do, I feel the relief of the release.

I’m letting go of all this overresponsibility. I can’t believe what I think is really important. Emptiness. I’m learning to put my needs first, my kids needs second. Right now that’s how it has to be. Thank G-d for Yoni and Mom and so many people who are making sure they’re doing great. And they are doing great. It’s been a good challenge to let go of all the guilt that I learned to let motivate me. It’s so quiet and peaceful here.

It took a while, but weeks and weeks of disability taught me to take care of me, take it easy, let go of toxic guilt.

What I’ve learned from this last long round – to be to be to be instead of to do to do to do. I stress myself out from the run to accomplish, to do, to control. Letting go of control I get that It’s all a gift. I’m Learning to receive the gifts, quietly, humbly. Trying to let go of all the voices that tell me the gift is wrong, wrong size, color, send it back for an exchange. Accept the gifts. Giving and receiving. It’s an art. We’re broken givers, and broken receivers. We need to work on our giving and receiving. Never understood the depth of this point. Maybe this is the most important thing. Why we’re all in this together, why we’re all intertwined in each other’s lives at all, why we co-exist at all in this reality. To learn to give, from real love and to receive from pure gratitude, maybe that’s what I’m meant to learn and to share in this world. And maybe all this fulfills the deepest purpose. Letting go of guilt. No room for guilt from either end. Guilt does not grow love and connection. Fear does not grow love and connection. Obligation from either of those places, guilt and fear, does not grow love and connection. It grows resentment, avoidance, aloneness. What is healthy and what is unhealthy obligation? These are my questions.

I’m forcing myself to move more and more. Each day of improved appetite, energy, mood lifts me higher and higher. I’m living in the now again. And I feel like I’m earning the rest. Naps are okay. Not to feel guilty. It’s me taking care of me. I am not overdoing it. I’ve started meditating the cancer away. I’m on a good track.

I received this today from my buddy Brad. It just says it all:

Perfection Is Like Death - Pema ChodronShare

We think that if we just meditated enough or jogged or ate perfect food, everything would be perfect. But from the point of view of someone who is awake, that's death. Seeking security or perfection, rejoicing in feeling confirmed and whole, self-contained and comfortable, is some kind of death. It doesn't have any fresh air. There's no room for something to come in and interrupt all that. We are killing the moment by controlling our experience. Doing this is setting ourselves up for failure, because sooner or later, we're going to have an experience we can't control: our house is going to burn down, someone we love is going to die, we're going to find out we have cancer, or someone is going to spill tomato juice all over our white suit.

The essence of life is that it's challenging. Sometimes it is sweet, and sometimes it is bitter. Sometimes your body tenses, and sometimes it relaxes or opens. Sometimes you have a headache, and sometimes you feel 100 percent healthy. From an awakened perspective, trying to tie up all the loose ends and finally get it together is death, because it involves rejecting a lot of your basic experience. There is something aggressive about that approach to life, trying to flatten out all the rough spots and imperfections into a nice smooth ride.

To be fully alive, fully human, and completely awake is to be continually thrown out of the nest. To live fully is to be always in no man's land, to experience each moment as completely new and fresh.

Blessing everyone for strength, courage and joy this Shabbos and always.

Much love,

Simcha Esther