Whew! What a couple of days it’s been. It’s my own darned fault for not writing sooner. Now I have LOTS to catch up about.
First, THANK YOU to all the incredible women who are saying Tehillim for me. And thank you to my very special friend who organized a whole team of ladies who together say the entire book EVERY day. I finished my tehillim last Shabbos – first time ever! It felt like such an accomplishment. And here I go again!
Thank you Jackie for the beautiful totally organic whole wheat bread, and Sharon for the delectable Shabbos platter, and to Marilyn for the gorgeous tray of fruits. Thank you Harriet for sending me a copy of your new book, “Emotional Wisdom” – it’s a real treasure! And thank you to so so many of you who are baking challah every week in my zechus. I just heard that some of you have completely filled your freezers with challahs because you’re making more than you can eat! Whoa!!!! That’s a lotta challah. And the feedback I’m getting is that ladies are turning out their best challah ever!
I don’t know if I mentioned it yet, but in case I didn’t, the challah baking is extra special for me. When I was so so busy running the school from as far back as 2000, single women used to come and help me cook for Shabbos. I taught a lot of them how to make challah and they came week after week to help. Then a weird thing started to happen. One by one every single girl got engaged. I can’t even remember how many women there were! That’s why we call it Kallah Challah. My friend Yaffa was one of those women, and when she started the challah gemach in Passaic it was especially moving for me. So, I bless us all that everyone’s challah should hold a reciprocal zechus, especially for all the single women who are doing it.
I had a super session with Dr. Gatto on Monday. Worked for a long time on irritation, frustration and anger. They have such a hold on me! A lifetime of grip. I’m looking forward to being able to take things easy, to come from love and compassion, and to communicate peacefully when I need to. What a challenge!
I went to Whole Foods with Akiva (my ten year old) on Tuesday. He was such a great helper. I didn’t even ask him to do anything and he pushed the wagon through the store, helped me pick out groceries, unloaded the shopping cart for the cashier and put all the bags into the car. Then he returned the wagon to the front of the store. Wow! We had such a nice time together. I was reminded of the regular outings we used to take together to the grocery store and farmer’s market when he was a toddler Now he’s grown up into a little man and as good as it was when he was a baby, now the experience is so much deeper and richer!
We went to Sloan Kettering on Wednesday for a follow up visit. No CT scans this month. It seemed like there were a lot more people in wheelchairs this time. Youngish people with bald heads. An oxygen tank. I kept trying to guess the patients’ ages, but it was hard to tell. They didn’t look so good. For the first time I really didn’t want to be there. I felt so good, so vital, so optimistic. It just didn’t make sense that I was sitting there.
While we waited to see Dr. Krug I listened to a women sitting near me. She was talking very loudly. “It’s the devil doing it. It’s the work of the devil. G-d doesn’t want his children to suffer. He wants us to live long healthy lives. It’s the devil that brings death.” And the man she was talking at said “G-d left. There is no G-d anymore.” And I was really sad for them, for their bitterness, for the lost opportunity to really live. Maybe that’s the work of the devil, to blind us to G-d and fill us with anger and misery. Yoni and I waited and made up 3 word phrases – ziplock baggy pants (that one was mine), and rumpus roommate (that one was Yoni’s, but I helped).
Dr. Krug said I look great. Everyone said I look great. I said it didn’t make sense that I was there. Weird. My liver function is getting better and bilirubin is still high but dropping. The staff couldn’t get over how amazing, great, healthy I look. And I just kept wondering what on earth I was doing there. After presenting Dr. Krug with my most recent alternative research, he assured me that I’m on the very best protocol for my cancer type. He said that there are lots of exciting things in the works, and that he is right there in the thick of it. Referring to my great response to the XL, he said that “we’re golden”, and I’ve barely even started it. Before we said our goodbyes till next month he told me to eat lots of ice cream and to have a very happy birthday. And that is exactly what I intend to do!
On Thursday I met with Rabbi Goldhar and at first we didn’t have much to talk about because the Richard Simmons work seems to have really helped. I actually did everything Rabbi G. had told me to do from last week and I was starting to get excited about learning my two halachos of Shmiras haLashon and a chapter form Rebbetsin Feldbrand’s book on Simcha, followed by Hamapil and the bedtime Shema. I go to bed every night with a big smile, feeling hugged and held by Hashem. And now the muscles are getting stronger. When I feel sad, I learn Torah. When I feel lonely, I learn Torah. When I feel scared, I learn Torah. And I am always comforted by Hashem’s loving presence. I’m less afraid of falling into melancholy. I feel like I found the antidote.
After reporting all this to Rabbi G., I showed him the outline for my documentary. It’s all charted out on a big board with little tags representing each shot. He thought it was really good. Could be a great kiruv tool. I got very excited.
My good friend Jackie came to visit on Thursday all the way from Scranton. I hadn’t seen her in years and spending those few delicious hours together made me miss her so much. She brought two fat loaves of home made totally organic whole wheat bread. Divine! I’m thinking about baking our daily bread now. Just a thought.
Clare came to cook with me on Friday. Her mom and sisters are quite impressed with her budding culinary skills! We made Yemenite chicken soup, Raizy’s shmushkele chicken with garlic, tomatoes, olives, cilantro and turmeric, and a bison, white bean and wheat berry hamin that cooked all day and night. I love those hard boiled eggs! It was a very sephardi Shabbos. I went over the documentary outline with Clare and cleaned up a bunch of the transitions. It’s good! Clare was impressed. I baked up eight whole spelt challahs in the afternoon and we ate some fresh from the oven at our seudah Friday night.
Shabbos was busy! Eleven for dinner and fifteen for lunch. We enjoyed the hamin out on the patio and it was a big hit. The big pitcher of sangria with fresh nectarines that I served alongside was completely drained – and the wine soaked fruit was good to the last drop! The weather was gorgeous and the kids played all day in the yard. People streamed in and out all afternoon. It was terrific!
Tisha B’av was a very big challenge. I fasted the whole day (except for one cup of water to take my meds in the AM). I was in a very bad mood by late afternoon and kept falling asleep. We tried to go to the Ohel in Queens, but I guess the Rebbe didn’t want us to come. Too much traffic over the George Washington bridge. We turned around and went to visit the local dead instead. It was very serene in the cemetery and the rain was misty. Yoni cleaned some graves with baby wipes while the kids gathered stones and put them on as many graves as they could. It’s a very big zechus in Shamayim.
Today I felt very tired and a little sad. The morning downpour while I was driving to Dr. Gatto didn’t help, but I had a great session. We picked up where we left off with irritation, frustration and anger. At 1:30 I turned on the classical music station and the sun started to come out. I took a long hot post Tisha B’Av shower and felt my spirits lifting. It was good to spend some time alone today after so much activity. When Oriel came home from camp we danced together to some Putamayo blues. He’s a very groovy dancer.
That’s all for now! Have a great week.
Love, Simcha Esther
PS We asked a shailah about my name. I don’t have to add a name because I never went by my Hebrew name before this matzav. So it’s really important for me to go by my Hebrew name now. I need ya’ll to help me out with that, okay?
Tuesday, August 5, 2008
Dearest Friends,
Many thanks to Chaya and Dovid, Chaya Ita, Ruchama and Yisrael for coming over for a lively game of Balderdash last night. Chaya won, but it was neck and neck between she and I at the end. One more round of play and I surely would have pulled way out into the lead.
Please keep me in your tefilos today. I'm psyched and ready for Round 2. Okay, now I'm thinking like Rocky Balboa. I'm the champion and I will win!!!!
There have been lots of requests for us to post the preview online. Sorry folks! Yoni and Tsvika have convinced me that too much of a good thing too soon will spoil things for later. Tsvika won't even give ME a copy! They know I can't be trusted to keep it under wraps. But Tsvika did promise to condense into a 1 or 2 minute trailer, which we will post as soon as it's ready.
I managed to convince them to take the full preview with us to Israel and we'll schedule an event there to show it to all of our friends. Most likely in the Old City.
Which brings me to my next point. I realized after the last round of healing liquid that traveling so far in between rounds is probably not the smartest thing in the world. So, IY'H, we are rescheduling the Israel trip for soon after Purim, after I've recovered from the final dose. What a celebration that will be! I'll keep everyone updated as plans develop.
Please note that Shany Gejerman's shiur has been rescheduled to 3PM on Shabbos. Don't miss it! It's great stuff.
I'll try to post again later in the week, but no promises.
Much love, Simcha Esther
Thursday, July 31, 2008
My Dearest Friends,
Thank you so much for all of your inspiring posts and emails! I love it, love it, love it!!! And thank you for the beautiful Shabbos flowers, and the beautiful engraved book of special prayers, and the book of Dylan Thomas’ poetry and cd, and for the very refreshing nostril balm. Thank you also for the leads for film makers, cancer survivors and alternative treatments. I feel your love and it’s so healing for me!
The days flew by so fast this week. I hope I got a lot done. Best of all was yesterday. I did not yell at my kids once the entire day. Huge accomplishment. I had a lot of fun with them starting with a before-camp-breakfast at Acme. Nothing like a muffin and orange juice picnic in the coffee bar at the grocery store! And I only was unpleasant once, with Yoni, poor guy. Today was not so successful in the getting angry/irritated/sulky department. I plan to work harder to keep my cool tomorrow.
Well, my appetite is back and now I’m afraid I’m going to gain back the recent loss. The coughing comes and goes. Maybe it’s just an allergy. And maybe the pain in my hip joint is just arthritis. Hope so. My back is feeling better and better and I find myself lifting more and heavier weight. I’m also sleeping better. That’s a blessing.
I had fun cooking again with Clare. Whole roast chicken with lemon, garlic and fresh herbs, steamed organic green beans and a portabello mushroom, whole barley pilaf. For Shabbos lunch we made a big pot of chicken stew with brown rice and a lemony green bean, snap pea, tomato, avocado and cranberry bean succotash from Martha Stewart Living. It was all very yum and I’m really proud of Clare – she’s cooking up a storm of her own!
During the week I noticed very clearly that G-d can only show up in the absence of negative thoughts. I noticed several times that now, where a negative thought would usually be, G-d appears. And I wonder then about negative thoughts. They really are the work of the yetzer hara. Depression is the work of the yetzer hara. To keep G-d out.
I noticed all this because I had ONE OF THOSE moments and I fell really fast and furious, and no matter how hard I tried I couldn’t cancel, cancel, cancel anything! I was researching cancer documentaries and I found a blog post from someone commenting on one of the films. He was going on about how there’s so much money in cancer research but no real breakthroughs. As an example he cited Tarceva and Avastin, the drugs I would likely be prescribed if/when the XL647 stops working. The guy said that when tumors respond well to these drugs, the cancer gets smarter faster and learns to mutate around the drugs. And there I was, sinking like a stone into fear and depression. I noticed about an hour later that G-d was absent from my heart. Not only that, I was starting to question His existence altogether. There are so many challenges right now with no clear resolution in sight. It’s a tough hand I’ve been dealt.
Every time I daven now I have waves of desire to be in Eretz Yisroel and I wonder if I will ever see the holy land again. For the last time maybe? What about Shabbos? I LOVE Shabbos! I don’t want to let go of Shabbos. What about the Yomim Tovim? How many more will I have? I can’t wait for Rosh Hashana, but I don’t want to hasten it so quickly either. Every day is precious now.
Shortly after I fell into the hopeless, scared, sad pit, I put my oldest daughter to bed and I hugged her so tightly and kissed her forehead so many times. And then the panic for my children was right there. How can my little girl grow up without me? Hashem can’t take me away from her. I felt like screaming. I had a violent urge to get rid of every reminder of cancer in my life, then maybe it would go away. The bottles of medicines, the painkillers, the remedies for side effects, the bracelets I wear every day, the books, the extra help, everything.
And when I realized that G-d was gone from my consciousness I thought that if I learn some Torah maybe I’ll find comfort. I cried it out (crying always helps, and talking) and picked up R. Greenbaum's book - The Wings of the sun. I read about hisbodidus. Pouring out your heart to G-d. It was perfect, but I also knew that ANY Torah would have helped me in that moment. Any point would be a point of connection. And it was not hard. The Torah really IS a tree of life and it feels so good to cling to it.
Then Yoni and I sat and talked for a while. I asked him to tell me his feelings. He had been hiding his feelings from me because he thought it would rattle me too much. It was really good to just hear where he’s at. I felt very close to him in that moment. The overwhelming feelings started to subside and Hashem began to fill my heart again. Not perfect, but better. Torah is the antidote. And then real simcha is possible.
For two days after that I had an emotional hangover. I felt fragile and weak, but I know now that it is a cycle. There is so much denial, and there needs to be. In Lawrence LeShahn’s book, Cancer As a Turning Point, he talks about the scab of denial. It needs to be there to prevent hemorrhaging. My problem is that I’m a big scab picker!
I met with Rabbi Goldhar today, my hishtadlus coach. He was terrific! We mapped out my daily spiritual choices – not obligations, duties, have to’s or shoulds – but real choices. It was pretty much what I do every day anyway in the prayer department, but it was good to clarify and to set limits. I have this loud voice in my head that tells me to feel guilt and remorse all the time that I’m not doing everything I can in each moment from a spiritual perspective. R. Goldhar had me talk to the voice and after a short while I was laughing, because the voice was attached to a shrunken little man that looked very much like Richard Simmons deprived of his morning coffee and with a finger caught in an electric socket. The ridiculous image really helped me let go of the negative chatter.
I asked R. Goldhar about extra segulas, prayers or learning that I could be doing to increase my merits in Heaven, and we agreed to take that up at our next coaching session. And then, just after he left, there was a knock on my door and a gift arrived from some very dear friends. It was a leather bound copy of Aneinu, a collection of beautiful prayers for every deep need, and extra special prayers for healing. My Hebrew name is imprinted in silver on the front cover. It is such a wonderful gift!
I think a lot about the legacy that I will leave my children one day. I pray that my life is teaching them that they can be happy, positive, grateful and connected in the face of real adversity. I hope they learn that even a terrible situation can be embraced as an awesome opportunity. I hope that they see me using the gift of challenge to connect and to do good. I hope that my film will capture all of this and more, for the sake of those I will leave behind one day, IY”H later than sooner, and for all the others whose lives might be saved or sweetened by it.
The newly diagnosed are contacting me now. Young people, with small children and so much still to discover about themselves and to contribute to the world. It’s a joy to give hope, inspiration and comfort. Talking with them makes the documentary and my book all the more urgent to get done. I am reminded of those first days, searching for strength. BH, I found amazing resources, but not everyone knows where to look for hope when it all looks so hopeless. Most don’t know that there’s even something to look for.
It seems so unnatural to be grappling with death at this time of life. For young people it represents a tragic loss of potential. Caught in the prime of life, there has been no chance to process the inevitability of death. Aging prepares us for mortality. It’s a process that begins usually around 30, 35, 40 or 50. Every wrinkle, each gray hair, all the birthdays shatter our fantasy of immunity and bring us a little bit closer to acceptance. But when death stands before you at 41, with no chance to have even begun the long process of coming to terms with it, the news is nothing but shocking. We all need that process of coming to terms with it, to understand that death, the great unifier, is the inevitable last stop for all of us.
For the first time in my life I want to get old, really old, and wrinkled and gray and decrepit. I long for old age and yesterday I dreaded it. I look at the elderly now with jealous eyes. It is a tremendous blessing to grow old.
We’re preparing to start filming and I’m drawing up a shot list for the first day of shooting. I’m so excited! Now all of life looks like a great film opportunity. It’s too bad we can’t just capture every moment. I hope to start on August 14, in honor of my birthday. I’m planning a big ice cream party for my kids to help them warm up to the camera – but, shhh, don’t tell them, it’s a surprise – and I’m having a big bowl of my favorite flavors in honor of my special day!!!
