Would you believe I have writer’s block? Never happened to me before, but, you know, most of this has never happened to me before. I’m hoping that if I just keep my fingers moving, the thoughts will flow.

I’m crawling out of the fog of side effects and I see that I’ve been ducking for cover. I’ve noticed that just when I probably need to reach out most, I retreat the farthest. Ugh. So, here I am. Trying my best to reconnect. I hope it’s a healthy sign of life.

After so many weeks of laying in bed, I feel really disoriented. It’s like the movie Sleeper, when Woody Allen wakes up from a deep freeze and finds himself in the next century. Remember when he unearthed the Volkswagon Beetle? We all felt the preciousness of that familiar old thing in the midst of his strange new world. That’s how I feel now, like I woke up in a strange new world. What’s frustrating is that I’m less tired now, so I can’t just sleep off the painful stuff. I have to go through it. I cannot believe how much stuff I’m processing. Sometimes I just want to take a day off and cry. A week would be better, even.

The last three days have been better. I saw Dr. Gatto on Tuesday morning. When I walked into his office, nauseous, scared, depressed, he really rose to the occasion. And somewhere in those two hours of talking, tapping, visualization and hypnosis, I understood better what my job is. Dr. Gatto said something about creating a fantasy and believing it. Well, I could do that! I could create the fantasy that I’m alive and well and making Pesach with my grandchildren and I could create the fantasy that the discomfort in my spine disappears. And the more I empower the fantasies, the more likely my body will respond accordingly. So, when I came out of the hypnosis and Dr. Gatto asked me how I felt, I said “I have a headache, give me a minute.” And I closed my eyes and imagined the headache gone. And it was! I had a hard time with this before, like I was lying about reality, but framing it as a fantasy that I could create and live into was really empowering.

The next day I pushed myself all day hoping I would get my energy moving. I forced myself out of bed and into my rocking chair. Then I forced myself into my clothes. And I basically forced myself from one thing to the next. By afternoon I took what I believed was a very well deserved nap, but that nap kept on and off till I fell asleep with Oriel in the evening. Oh well. It was a good program and I proved to myself that I could do it.

I can’t remember the rest of the events of the week. It’s all a blur. But there were some highlights that I can recall, not chronologically, but at least they’re in there. I went to Ateres Bais Yaakov last week to watch Batsheva in her school play and I went back today to see Eliana in her Pirkei Avos siyum/presentation. And of course I cried. I always do. I did two art therapy workshops with Yocheved, and cried my way through one of those as well. I had a massage with Darcy, but I did not cry.  I had another dose of healing liquid and laughed at a couple of episodes of My Name is Earl. It was definitely easier with the port. I’m still squeamish about it, but I’m going to get used to it. We had a beautiful Shabbos (I think I made dinner…. I can’t remember) and we lunched at Chaya and Dovid’s. Dovid is the cook in the family and he’s terrific! They served his marinated salmon over an arranged salad of beets, jicama, tomatoes, carrots, cuke, green beans, and who knows what else. Gorgeous. They certainly have a flair for presentation, which did wonders for my waning appetite. The kids were angels at the table, and then they went off to play with their friends. I spent the entire afternoon relaxing in Chaya and Dovid’s beautiful garden where a few of my own friends came to visit throughout the day.

Clare came by one night to watch Tess of the D’Urburvilles with me, the original Roman Polanski version. She’s a big fan of the classics but we both agreed that this one was thoroughly depressing. Took me a day or two to shake off the added gloom.  I went to Cosco and Target on Sunday with Yoni and the two little ones. We were a vision in the parking lot, Eliana and Oriel in the front of the double wagon, and me hanging on the back, while Yoni pushed us through the incredibly crowded parking lot. The guy parked  next to us laughed and called him superman.

At Target we got ourselves a hammock and a slip and slide. Remember those? As Mom and I left for Monsey with Akiva for his Sunday afternoon little league game, I watched Oriel sailing across the lawn on his belly, laughing his head off. Akiva’s team has had a perfect season, and this game was particularly exciting, with his guys scoring the winning run in extra innings. I made myself a tuna fish sandwich one day. That was an accomplishment. And I ate it all up. Even bigger accomplishment. This loss of energy is such a change for me. It’s really something. But today I’m less depressed about it and I’m visualizing feeling good, feeling great, feeling wonderful! It’s strange, but when someone asks me how I am, and if I say “I’m terrific”, well, it really does cheer me up and I can feel the power of possibilitity.

Mom and I went to Radiation Oncology today to meet with the radiosurgeon. He said that the tumors are so small, they’re not causing any symptoms, and they may continue to shrink over the next few months from the original radiation, so he did not want to proceed with radiosurgery now. He also said that a benefit of radiation is that it creates perforations in the blood brain barrier, so chemo drugs are able to get through. That was great news. He recommended a follow up scan in 2 or 3 months, and every 6 months after that. He put me at east about a lot of the symptoms I’ve been experiencing. I have to strengthen my focus on the healing liquid continuing to work, and to work even harder.

Tsvika is diligently going through the hundreds of hours of footage he’s collected since August, organizing it into a first cut story line. I can’t wait to see what he’s got as he works through it. I think it’ll help me so much to see the old me. If it inspires me now, I’d say it could inspire just about anyone. We’re getting closer to a premiere date and location. September 15 or 16 seem to be good possibilities, at Symphony Space, on the Upper West Side. Now we’re looking for a great place for the post screening party. Any ideas?

So many people were so good to me and my family over the past two weeks. We received a huge care package of Bubby’s home cookin’ and I think we ate it all up in less than 3 days! And we received many delicious and healthy and beautiful meals from friends. Rachael sent over some just baked challah along with our weekly groceries which she’s been regularly fetching for us.  Our homework helpers are just amazing. They really put up with a lot here! Huge thank you to everyone who wrote to me. It kept me going through this really rough patch. Please don’t stop! It helps so much to know that I’m not alone.

Well, my fingers have stopped moving, and the words are no longer coming. Maybe next entry will be richer.

With much love,

SE

David’s Savory Salmon

6 pieces wild salmon fillet, as thick and regular shaped as possible

1 cup tamari

Juice of 1 lemon

Splash apple cider vinegar

3 heaping tbsp fresh, finely chopped garlic

Dill

Combine Tamari sauce, lemon juice, vinegar & garlic into a bowl & mix.

Pour this into a 9 X 12 Pyrex dish (or similar baking pan), making sure garlic is evenly distributed, not clumped up. Put fish strips flesh side down in the pan, to marinate for at least ½ hour. After at least one half hour turn fish flesh side up; many of the little garlic pieces should cling to the flesh. You can baste the liquid over the fish. Sprinkle lightly with dill over all the fish.   Put on top shelf of oven, beneath the broiler. Bake at 325 for 23 - 25 minutes, depending on how thick the fish is, how tender you like it and what type of pan you’re using. Then turn on broiler for about 5 minutes. Top of fish should get a little dark & crispy. Check that it’s not becoming burned.

After it cools peel the skin off the underside before cutting into portions. Best served at room temperature, not right out of the fridge.

Dear Everybody,

It’s been a tough two weeks, and my tendency when I’m down is to disappear from everybody. Which just makes it worse and I really can’t afford to spend any precious time dwelling in the negative. Dad and Fran were here last week and they accompanied me to the follow up MRI of my head, and to CT scans of the rest of me. When Oriel announced that “we have to work the flowers” they planted a beautiful flower garden with the kids, all purple and lavender blooms. In between those days Atara and I escaped to Woodstock for an overnight and chilled out at the beautiful place near the kaleidoscope that I wrote about months ago. It was stunning to sit outside, looking at the trees, listening to the stream, and contemplating the quiet. It’s a challenge sometimes to sit with nature. The silent magnificence can be so confronting. Just me and Creation.

I’m feeling a lot of side effects of the radiation and Dr. Gejerman told me it could be several weeks longer. Apprently the myelin needs to grow back and recoat all the nerves. He said sometimes the effects don’t hit till the therapy is all done. It’s like living in a black cloud. I hate feeling so out of it for so long. I start to doubt that I’ll ever feel better. I’m so disoriented and overwhelmed. It’s just one test after another and it’s hard to see the future when I feel so blah.

I had the mediport put in on Tuesday. Mom came with me, and Ella was there when I came out of surgery. It went well and I felt tremendously relieved that it was done. Chemo was a breeze yesterday once I got past how weird it was to be stuck in the chest. Not sure I’m over the weirdness of that yet. But one stick and it was done. So much better than five bandages. The surgery site it swollen and uncomfortable, but it really didn’t hurt when they iced it and accessed it for the blood draw and drugs and I was in a good mood after the surgery.

When I’m lonely and scared all the messages from you guys mean so much to me. Over the past two weeks there have been a lot of new friends writing to me from a high school in South Africa. Thank you everyone for all of your prayers and especially thank you for all the mitzvos you’ve taken on in my zechus! Please keep in touch and let me know how it’s going!

I can’t believe how supersensitive I am. I’m tuned into my body pretty intensely. Sometimes I wish I weren’t – like when I’m outside on my porch (Yes, I’m porching again!) and the whooshing of the leaves in the wind starts spinning around in my head and I get dizzy from the intensity of it. It’s amazing to hear the sound moving around and around like a machine. I’m still wobby sometimes and my sense of smell is pretty acute. Noises are much louder to me and sometimes it hurts be in a noisy place. Like where my kids are. Oy!

I’m home now, sleeping in my own bed. One night I fell asleep with Oriel and I just couldn’t get up. So that was that. Yoni is doing his best keep it peaceful around here, but boy are my kids lively!

I’ve lost my appetite. I hate that. Especially because I can’t take pain killers on an empty stomach. So, I’ve been recruiting food. One day I called Atara for her incredible pancakes, then another day I called Marilyn for her homemeade cheese blintzes. If I can think of what to eat I’ll find someome to get it or make it. It’s getting harder though to find things that I want. This morning I had an English Muffin, then later I had lemon Italian ice, and then applesauce. It’s hard. For Yom Tov my Mom made a huge pot of chicken soup, a pot of borscht and a batch of challahs. There’s a cheesecake waiting in the fridge, some Haagen Dasz and a bowl of jello. I hope I’ll have what to choose from.

I got the scan results from Dr. Krug yesterday. Everything in my brain shrunk except for one area. Seems like radiosurgery might be necessary. We’ll see. Dr. Gejerman will know better next week. Also, CT scan showed no growth in bones. That’s good news ‘cause I’ve been off chemo for a month and a half right? There was some growth in my lung, but it’s wait and watch, proceed with chemo as normal.

Blessing everybody with a joyous Matan Torah!!!!

Much much love,

Simcha Esther

PS I received the following email today that I want to share with everyone. Please daven for me!

May 28, 2009

In one of his shiurim, HaGaon HaRav Yitzchak Zilberstein explained that his father-in-law, Maran HaGaon Rav Yosef Sholom Elyashiv Shlita would on erev Shavuos visit the sick, remembering that we learn that prior to giving Bnei Yisrael the Torah on Shavuos, Hashem healed all the sick, including the blind, deaf and mute - all were healed.

Rav Elyashiv explained to a sick man that every year, on Shavuos, this power is renewed. This is a time when one may call upon Hashem and asked to be healed; even for such illnesses that we generally feel there is no cure.

It was asked at what time on yomtov may one ask for a refuah. Rav Elyashiv pondered for a moment and stated the time is when we read the Aseres HaDibros in the torah reading.