My dear friends. It is only Wednesday and I don’t think I can take any more of this week. Hashem me slammed against a wall and I am fighting hard to see the good in it all. And every time I get a little close to gratitude, empowerment and joy, He slams me again.

Not to get into the myriad of challenges in the private places in my life that I’ve been grappling with in deeper and growingly serious ways, I had been dealing with the special challenges of preparing for Pesach. I cleaned every drawer, every shelf, every surface of my house. Though, I didn’t get too deeply into the basement (sold it for the most part), or the garage (no chometz out there) and my attic is just stuffed with school equipment (anyone want to buy some?). I feel pretty good about what I did do and I definitely dumped a satisfying number of black trash bags stuffed full with the debris of spring cleaning. Then there was “the turning over of the kitchen”, which began on Sunday (with the mysterious disappearance of the family alpha male) and the deep cleaning (thanks Jasmine and friend!) followed by an encapsulation (not unlike a complicated absbestos abatement) of the chometzdike surfaces, cookbooks, pots, pans, serving pieces (thanks to Maria) and ending finally with the emplacement of the Pesach countertops (in some odd size places with black garbage bags and heavy plastic tablecloths), cookware and serving utensils (thank you much to  my strong friend Yaakov, who singlehandedly shlepped all of my stuff down from the attic, and even offered to help put it away! And all with a smile and sense of humor. You’re the best!

Then there began the Pesach shop and we hunted and gathered (thanks Mom!) some of the essentials. But there was still nothing to eat until Yoni finally reappeared from his mysterious obligations in Monsey and scored some pizza at JII and we devoured it in the chometz only zoned the front porch. I was done being mad at the breadwinner, but tensions continued rising when my very resourceful daughters, and their good friend from down the road, decided to make a lemonade stand. It was a freezing day, the lemonade was chometzdik, the table they found in the garage surely had been chometzdik at some point in its’ past and I was exhausted, stressed out and beyond tired. I fell asleep on the living room couch and Mom gratefully took the whole gang to her house for dinner and rollerblading (not Mom, can you imagine? Though she was quite the roller queen in her youth).

When Tsvika called to schedule our film shoots for the week, I told him I was done making Pesach. Forever. I had this idea a while back and it suddenly resurfaced in my brain. I ran it by him cause he called, and now he was stuck on the phone. A Pesach trailer. Like a film crew catering vehicle. You rent it, park it in your driveway, and just cook up a storm. Yoni came in and suggested refined it. Time- share portable Pesach kitchens. Up to three women can take turns cooking up a storm. There are many creative solutions to be discovered. I was losing it and Tsvika was pretty impressed that I can really crack myself up. When I went on to my next idea he started taking notes. It’s called a Hukkah. You hitch it to your car over chol hamoed Sukkos and just hit the road, anywhere you want to go, and your bar mitzvah boy and men can eat just about anywhere because you always have your Hukkah. And when it rains, no worries, it has a flip top lid. (I suppose you could hitch your Pesach kitchen for long hauls as well for that matter) The Hukkah can be a rustic contraption, not unlike a refurbished UHaul Truck, with the lid replaced and the storage space fitted with a picnic table and portable barbeque. Maybe even a cot, or hammock for longer trips. The cooking trailer is more like an Airstream RV, remembrer those? The slick silver tin can of a thing? It could be made pretty with little gingham curtains fluttering out the slide open-kitchen window. Just pull up some folding furniture (a la Metro Goldwyn Mayer) and enjoy your matzah. Like it? You can rent both serious yom tov vehicles for one low package price. But you have to reserve early, these things roll out fast! Call 1-800-hukkahmeup. Or something like that.

I told Tsvika I was going to Monsey for some big shopping. He said hey, can you pick me something up while your there? It’s like that these days. I’ll be talking to my friend, and she’s just going into Kosher Konnection and I’ll has her to please get me a quart of Pesachdike milk, or she’ll  be jumping into Target and I’ll say, “Wow, Target! Do you think you could get a plastic Pesachdike tablecloth?” So I  said “sure, what do you need?” And without missing a beat Tsvika gave me his shopping list. “Do you think you could get me a purple hukkah?” Good one. I never made it to Monsey.

It’s a good idea though, the hukkah, no? Want one? I’m taking orders right after Pesach for Sukkos. Just call 1-800-hukkahmeup.

By Monday morning we were living off of plain yogurt, oranges and potato starch chocolate lace cookies. So, after a great session with Dr. Gatto I headed for Whole Foods. I loaded up on organic produce and organic eggs and headed for the checkout. While I was unloading my stuff I saw that my field of vision was distorted by the light. I rubbed my eyes and hoped it would pass quickly, as it had a few times in the past, but it just got worse. After a few minutes the light was fully blurring my view (not blurring really, because the image was clear, it just wasn’t focused at all in any one place) and I was seeing in a jumble of disorganized levels. And the light and shadows were hitting the image in lots of places I had to squint really hard and get really close to the bank card machine just to choose my button. And I had to stare and press to find the button with my finger because when I thought I knew where it was, when I reached for it, the button was a little more to the left, or the right. I kept rubbing my eyes, but it didn’t help and I hurried to get out of there and outside into the natural light. But it wasn’t any better. I  and managed to get my bags in the car while I waited for it to pass and prayed that nobody would sit and wait for my spot, because I needed to sit and wait for my eyes to get normal. I couldn’t wait anymore (Yoni was home alone trying to work and all four kids refused to go to their arranged playdates so I felt a certain dread and pressure just from that) And I still had to get to Monsey, and to the liquor store and to Target.

I pulled out slowly and kept checking behind me and on both sides. I still couldn’t focus. I pulled into the smaller parking lot that was off to the side and tried to read my dashboard, the clock, the traffic signs, but it was hard and I was getting a sharp headache from all the strain. I tried my glasses, but they didn’t help and they made me nauseous. I started to cry, I imagined the worst and I just couldn’t handle it. When the road was clear I got a grip, pushed the terrifying impossible thoughts aside, and I rolled out of the parking lot and sloooowly headed for Valley Road – a straightaway home. The traffic was very light and I wondered if people were keeping a good distance behind me. Was I driving funny? I checked the speedometer – it looked like I was going somewhere between 30 and 40. Good. I could do that for most of the trip home. I got on route 3 and the traffic was light, and I got off on Passaic Avenue, the least number of turns all the way home.

When I miraculously pulled into my driveway my vision still hadn’t cleared and it had been about 40 minutes. I left everything in the car and ran into the house. I bumped into Yoni in the kitchen and blurted out something like “I’m having a problem. I can’t focus my eyes.” And Yoni followed me into the bedroom He grabbed my laptop to see if it could be a drug reaction from the chemo, but it was unlikely. He wanted to call Dr. Krug, but I forgot the number. I started to panic and my head was aching from the driving I was freezing and shaking and nauseous. I ran to the bathroom to throw up but I hadn’t eaten anything all day except for a pear. Yoni brought me an orange. I took one bite and gagged. I had no appetite. Yoni found Dr. Krug’s number and called Jaquie. I got on the phone and lost it. I told her I hadn’t been able to focus for about an hour and I was throwing up. She was great. Told me she was calling Denise, Dr. Krug’s nurse, right away. I hung up. When Ella called, or Yoni called her, I told her what was happening and she was very calm about it, but hinted at the worst as a distant possibility. She asked me a question and I couldn’t locate the words to answer her, I had the thought but I was stumbling over the words and I gave up. I was crying and panicking. I hoped it was all just an anxiety reaction.

When Denise called I asked Yoni to take the call. He described the symptoms and she said what I knew she’d say, “come to urgent care to get checked out”. She was also great and said they would do a CT scan to rule anything out, but they really wanted an MRI and it was hard to hold onto “to rule everything out”. She said I could take some Tylenol, which Yoni brought me.

I was freezing and wanted a hot bath to warm up before dealing with it. I filled the tub with hot hot water but it just made me uncomfortable so I got out and got into bed. I was so tired. Yoni asked if I could be ready to go in 30 minutes. It was getting late. 30 minutes was a lot. I guess I could shoot for that. After 25 minutes hiding under my covers my vision was getting much steadier, but I was still nauseous and my head was aching. I got dressed in 5 minutes and hit the bathroom one more time to throw up. All water. I still couldn’t eat, though I was starting to get really hungry. The orange had disappeared somewhere under the blankets.

Ella said she’d meet us at Sloan, and Tsvika asked if I wanted him to come too. So, Team Chemo was back in action and we got in the car and I fell asleep in the backseat. By the time we got to Urgent Care I wasn’t so nauseous and my headache was gone. My vision was totally normal. So, of course, I felt stupid, but I went in anyway. Everyone around me looked awful. Really acute cancer patients. A lot of pain a lot of suffering. A nurse took me into triage (followed closely by Team Chemo) and she got a blood sample lickey split. She left an IV in for the CT scan and any fluids I might need.

We went out and waited. I Drank some diet Coke that Tsvika brought and within minutes my nausea was gone. I ate part of a donut and a few bites of a bagel that Yoni brought for me. I felt pretty good. Someone came to wheel me down to radiology for the CT scan and Ella arrived with her huge bag of shopping while we all waited. And waited. Yoni sat in the little space that they used for drawing blood and putting in IVs. Tsvika joined him. When he saw Ella arriving he quickly pulled the little curtain closed around them. That was his pleasant hello. That’s how it always is with them. But it’s funny sometimes, and this time I needed a good laugh. Ella started pulling out fruit. Apple, orange, banana. She ate her lunch and I ate some banana. We waited.

They finally came and took me into the room with the CT machine. The technician looked nice. He had a cool name. Anamta, I asked him what it meant. He said it was Hindu for immortality. Oh that’s great. Gimme some of that I said. He said he worked in a great place to share his name. I guess we all need to leave some legacy he said. I told him I’m working on my legacy. I’m making a documentary film H was impressed. I said my filmmaker was outside. Could he come and get some shots? Immortality looked a little nervous but clearly interested. It wasn’t hard to convince him to let Tsvika in for a couple of shots.

They scanned just my head, but I didn’t think too much about it. Good film ops make everything easier.

After the scan they brought me back to the waiting room in Urgent Care to wait for a doctor to evaluate me. Tsvika went out to grab some lunch and took everyone’s weird orders. I just wanted a tuna sandwich. Finally they put us in a room in the ER and we waited. Tsvika came back. Various cold pizza slises, grilled veg wrap, tuna wrap. The nurse came in, took my vitals, hooked me up to a saline drip and we waited for a doctor. Yoni noticed that the upholstered bench in his corner was really a hidden toilet.

The doctor arrived and she noted my symptoms. Ella cut her off and asked her for the scan results. She was surprised that I had the scan, she was just going to order one. Then she said she’d go check the report, but that knowing Dr. Krug, he’ll want an MRI anyway, He’s conservative that way. They started with a CT scan just because it’s quick and easy to do.

While she was gone we manufactured all our diagnoses. Yoni was sure it was dehydration. Ella and Tsvika thought it was a drug reaction. Stress was mentioned. But Dr. Ellie came back and didn’t beat around the bush. The scan showed brain abnormalities. Dr. Krug would want his MRI and I needed to meet with a radiation oncology team. There were several spots and they had to radiate the whole brain to get it all. I was being admitted. We just stared at each other. My worst nighmare was confirmed and I couldn’t really believe it. After a few minutes I said “this is just a blip right” The other three nodded vigously. “Yup a blip. A road bump. A bump in the road.” Then there was the pep talk. “You’re gonna gather all your strength and you’re gonna fight it and you’re gonna win. It’s good you caught it early. Tsvika flushed the toilet to send home the point. We all laughed. That felt good. Then Yoni and Ella went to look for a real bathroom and Tsvika talked to me. He said get a good night’s sleep, eat a big meal and get gather your soldiers for battle. I couldn’t believe he could sleep and eat before going to war. He said he had to and it helped him a lot. His army wisdom always empowers me. When the doc came back to tell me I’d be starting on Dexamethazone (my good friend the steroid) I asked her to please give me a sleeping pill. She ordered Ambien and I was at peace about it. I need a good night’s sleep, a big meal in the morning and then I’d gather my solders.

Ella and Tsvika both left after 1am and Yoni and I fell asleep on the gurney together. It worked if we lay down head to toe. I felt like I did a year ago, but different. I wasn’t so alone now. I had my friends and I had G-d, even though wasn’t too happy with him by Monday night.

The Ambien helped a little and thankfully my roommate was quiet. The night nurse was an angel and I was left alone till at least 7am. I met with Dr. Krug’s associate and we discussed the details the treatment. I told him I’d probably want to do the radiation therapy closer to home, in light of the holiday and promixity, and he asked with whom. I told him Dr. Gejerman, at Hackensack, and he was totally on board. He said he’s sure Dr. Krug would approve too. Before he left he asked me if I wanted to participate in a study on non-smokers and lung cancer. I said you bet, it’s a about time. Dr. Krug told me last Erev Pesach, that they haven’t found any genetic or environmental links. Dr. Miller said that now they’re looking and it could open the door to lots of new and experiemental therapies. He knew my case and said he knew that I had a very rare mutation and that even then I had a 1 in 1,000,000 presentation of the mutation. I’m very interesting to them. My data is critical to their study. But I had to laugh, because I’m probably one of their few patients with a strong G-d factor, and I knew that would skew all their research. Oh well. He was grateful for my participation and I was grateful for G-d’s miracles.

Dr. Krug and Denise came by and it was good to review everything in person with them. He approved of my choice to go to Hackensack and said he’s be in touch with Dr. G. He was holding chemo until after the radiation was complete, CT scan in a month, and he felt really good about the efficacy of the treatment. He said it almost always works, and it works well. I said I was looking at this as a blip in my progress, and he said oh yes, definitely, just a road bump. He said that a good attitude was key, and I surely had that. He’s noticed! Dr. Krug really cares about me, and I can tell that I’ve opened some doors for him in his thinking. We’re a good team. He said he needed an MRI, or at least a CT with contrast, for significant baseline information. He knows I’m claustrophobic, and couldn’t see getting an MRI ordered with an anesthesiologist to put me out, in short order. So we settled for the CT and he ordered it for later that day.

Someone at some point mentioned that chemo drugs can’t penetrate the brain blood barrier, and that radiation to the whole brain has to be limited to 1 time only. Radiosurgery would be an option, if necessary, pin-tointing remaining or recurring cells. This all sunk in slowly throughout the rest of the day.

Ellla and Tsvika were up to their ears in Pesach prep and they talked about coming later on Tuesday, but I didn’t push it because I knew we’d be out of there in a few hours. The scan was unnerving. I knew they were looking for stuff that they were going to find and it was kind of scary having all the information revealed. But I hung in there. They got their pictures, and I only started to all apart later. A woman came by to see if I wanted to fill put a form appointing someone in charge of making decisions on my behalf in a medical emergency. I’d avoided it this long, and here she was, so I said okay. And so we did it, and it’s in my chart for them to consult with Yoni to decide on behalf if I can’t. Then I cried. For lots of reasons. And we gathered out things and headed out. We had an appointment with Dr. Gejerman and his team in Hackensack in two hours. We grabbed a bite in Teaneck but I just kept sobbing. It was a lot to process. Why was Hashem giving me all this? Tsvika said he’d meet us at Hackenack with his camera. Good. That would be interesting.

Dr. G. escorted me into the back. He reminded me that I didn’t need to come here if I wanted to see him. I could just sit out on my porch and eventually he’d walk by on his way home from shul and he’d stop by if he saw me out. I said I’d try that next time. Then he explained what would happen. He’s always jolly and makes things sound better than they are. It’s not that he’s lying, it’s more like he is just matter of fact and okay with reality, no matter how hard it is. It’s all good. Like the plastic mask they’d be making for me to wear during treatment. And like that all of my hair would definitely fall out and maybe my eyebrows. (the eyebrows already mostly fell out and my hair is most what’s left after the chemo. He said the hair would probably come back in a month or two. Okay.  I asked him to tell me if there’s be any side effects. Nausea, no. Indigestion, no. Loss of mental functions. No. He pushed for 15 fractions, slightly lower dose over longer time, to prevent that. Whatever changes occurred would be temporary. Like short term memory loss. He fought for more treatments lower dose with Dr. Krug who wanted 10 fractions. He thought I could handle the potential neurocognitive effects. Dr. G. said he knows me and that I surely wouldn’t be at all okay with that and Dr. Krug said yeah, I know her too, you’re right. Fifteen it is, preserving one chance to go in again with radiosurgey if necessary in the future. G-d willing, it won’t be necessary. He said I’ll be really tired for the three weeks. Okay, I can handle that.

Then his assistants came in to get me ready. They fitted me with this self hardening plastic frame that would be my personal mask. It had tiny holes all over it, but Tami cut more, bigger holes for eyes and for my nostrils. I thought about Freddie, from Friday the 13th. Thank G-d for small gestures. Then they bolted the finished mask, my head held tight inside, to the bed and they slid me into the CT scan while Dr. Gejerman lined me up with the XRay. They would use the CT imagery to line me up each time. That’s a good thing. I don’t want any radiation hitting my brain anywhere it isn’t supposed to go

I made it tbrough the long ordeal and we met with Dr. G. again afterwards. He told me again that he believed I was going to make it. He told me that radiation therapy to the brain is very effective, and that there would be options down the road if necessary. He promised me again that he’d get me through it. I start today at 12:15 noon. Must sleep, eat and gather my solders.

But I am buzzing on steroids again (wasn’t I last Pesach too?) and was wide awake at 1:30 am. But fell asleep last night at 9:30 and forgot to write, so I’m grateful for the time. Today is Birchas HaChama It comes every 28 years, and Hashem arranged it to fall now For me, for you, for all of us. There is a power in the day, the power of complete renewal. This year Birchas Hachama falls on erev Pesach, the day before Pesach, the season of complete renewal, the time of renewal of emunah I need emunah right now. I feel like I am close to the edge of losing everything. I’m searching everywhere in every moment, every test, for Hashem’s love, His closeness, His intention for my good.

After the brocha at sunrise, gathered in the park across the street from my house, among thousands of my neighbors, I’ll bring what’s left of my chometz, my leavened bread, the bread of haughtiness, over to the smoldering dumpsters and leave it on the fire. Humility is a key to emunah. Maybe the process of burning my chometz will be the portal to the redemption of Pesach. I desperately want to arrive at freedom. I think I will arrive very soon or I will not be able to function. All of these tests couldn’t come at a better time. After biur chometz, burning of my physical chometz, I’ll head over to Hackensack Hospital to begin my 3 week course of radiation therapy. And that is the real burning of my chometz: The physical cancer, the inner shells around my spiritual sources, and the resistance to letting it all go. It’s pretty ironic that it’s all in my head. I live heavily in my head. I create worlds with tremendous power in the cradle of my thought. Maybe this is my chance to really let go of disempowering thinking, to harness my awesome creative power and to let go of all that doesn’t serve me. Funny that it begins on the birthday of the sun. No accident that I’m a Leo, is it? Today is my day, I have the power of the sun.

After biur chometz in Radiation Oncology, I’ll come home and prepare for the first seder, yetzias Mitzrayim, the deliverance from bondage. Yoni taught us from the Nesivos Shalom that the longer we learn about our redemption from Egypt at the Pesach seder, the more we’ll be grasping the available energy of emunah, of total faith in Hashem, for the entire year.

It’s such an unbelievable day for facing our tests and coming out with G-d. I intend to milk it for everything it’s got. Getting up now. It's time to catch the sun.

Blessings for real geula this Pesach. Freedom from everything that binds and deep deep closeness with Hashem.

Love,

SE

PS Many thanks to all of our friends and neighbors who helped us over the past 2 days to finish and cook for Pesach!!! We love you!!!!

Dear Friends,

I’m tired today. Up most of the night waiting for my alarm to go off so I could get Akiva off to school. But all for nothing – all four kids were up and running wild by 6:15. Akiva got himself off to school while I buried myself under my pillow. I hope he took a good snack. I have a bunch of cooking today and the last of my Pesach cleaning. I’m down to the hall closet and my kitchen, which will be deep cleaned on Sunday. I’m excited about this Greek lemon garlic chicken with potatoes that I’m making. I love lemons!

Last Shabbos was so so so nice. The girls were at a friend in Monsey and Sarah and Atara came for lunch. They did a fantastic job rustling up some emergency grub. You see, I have this habit of forgetting to turn on the burner under my blech. And last Shabbos was no exception. We had to dump the whole chicken stew. It should be a kappara! So, they found some cans of tuna, pickles, salad, raw veggies, humus, roasted beets and asparagus. Atara brought a gorgeous red quinoa salad and peanut butter chocolate chunk cake. The cake was the main attraction. We should have just started and finished right there!

Shabbos was steeped in deep woman talk and it was totally cathartic. Esther Rachel, Sharon, Talya and Ruchama all came by to add to the tapestry of great females. We processed lots of life over the course of a day. All of my closest friends are going through heavy stuff. I think we’re holding each other up. We’re celebrating the insights, the empowered choices and the impending redemption. It must be coming. Soon I hope. Being in the company of these powerful women I feel totally loved, totally gotten and totally appreciated.

I drove to Monsey on Sunday morning to get Batsheva and Eliana and came home to attack the toy closet and guest bathroom. Organizing all the games made me want to play! I hope this Shabbos the kids will indulge me. I especially love Scrabble. I have 4 versions – regular, regular, super deluxe and the Hebrew version. But I’m game for anything and it’s raining. Perfect!

I finally got the point of Facebook! I was eavesdropping on a dialogue between Melissa and Michele, two very special friends from high school and I decided to butt in. Well! What a reunion it was!!! After 25 years!! Michele and I talked on the phone for a long long time after that and I think she’s coming to visit me from St. Louis in May. And then another high school chum contacted me with the most flattering sentiments. I’m liking this Facebook thing.

Yoni seems to be doing much better. He’s been walking around a bit, and he even did two short drives. Mom is back to work. Things are looking good. But I’m pretty spent from doing every morning and evening alone with the kids. All the changes are hard on them. They’re just getting reoriented and now it’s Pesach break, which means late nights. I hope they sleep in the morning.

I saw Dr. Gatto on Tuesday and he worked hard to get me empowered in the face of life. There is just so much going on. What would I do without my weekly sessions with him?

I drove the girls to school on Wednesday and dropped off my sheitl for a spruce up. I missed Naama when I passed her house on my way. She’s doing great in Israel. I hope to see her really soon.

Then I headed into the city and picked up Ella on my way to Sloan Kettering. I was nervous about my meeting with Dr. Krug, but he was really positive. I got up the guts to ask him if he has a lot more drugs up his sleeve should this one fail and he promised me that he has lots of drugs, not to worry, this one is working great and I’m doing really well. He told me not to worry at all about the CT scan in a couple of weeks. He feels good that this drug is doing the trick. I was surprised that he didn’t bring up the topic of a mediport. When I mentioned it he asked me if the chemo nurses have said anything and Ella nodded vigorously. He said that it’s probably time to think about it then. He said he’d send a surgeon to talk to me later about it. After the excrutiating blood draw I was starting to warm up to the idea. Ella gave me a good talking to, actually several, throughout the day, and I was psyching myself for the inevitable.

My blood counts were really good after the Nuepagen and Dr. Krug changed my regimen to two weeks on, one week off, instead of 3 weeks on, 1 week off, to give my body a better chance to bounce back. After my meeting, Ella and I headed to Café U where they have the yummiest haloumi salad – with these skewers of zatar rubbed grilled cheese kabobs over a pile of greens and other things. But they didn’t have the haloumi salad. Oh sadness! We grieved briefly and then ordered the cream of artichoke soup to share and portabello mozzarella salad and haloumi salad with warm goat cheese, no haloumi. Well, the soup was awesome unbelievable! Really lemony and there was a tender morsel of smoked salmon gently cooked in the hot broth, floating in the middle. It brought to mind the scent of ancient embers in country tapestries and woodwork. I was transported to the old farmhouses of Woodstock and the stone homes in New Hope on that brief taste of salmon. It happens to me. I am sensorially moved by places. I can drive down a ramshackle street and get whiffs and tastes of past life experiences, or real life experiences, or dreams or whatever! It’s cool when it happens.

Ella said I’m a setting person. She’s a relationship person. I’m moved by places, she’s moved by people’s stories. It’s true. Every place I go evokes deep responses. Everywhere is a set, waiting patiently for some drama to unfold, if even only in my mind. So the salmon sent me back to the farmhouses in Woodstock, and the old stone mills in New Hope. I was transported on a bit of salmon and Ella gladly let me have more than my half. I loved the gorgeous pumpkin colored wall and the way the dishes were artfully arranged to tempt every palate in the house. We had to check out everything as it came out of the kitchen. We weren’t the only ones. People were ordering based on what they saw their neighbors eating. We suggested that the waiter announce each dish as he stepped into the dining room. He said he’d think about it.

Atara joined us for a cappuccino as we were finishing up our salads and we all headed back to Sloan. The Wednesday team of chemo nurses is my favorite. We were warmly greeted by Amanda and Colleen as soon as we arrived. They did a lousy job of hiding their glee when they heard that I was meeting with a surgeon to talk about a mediport. I was making their lives difficult, me and my hardened veins. After Amanda tried two very painful times to get the IV going, she introduced me to Ed, the guy in the space next to us. He opened his shirt to display his port. It wasn’t bad really, just a slightly raised bump under the skin near his collar bone and a tiny scar. But he’s a guy and the scar looked okay on him. I don’t have a hairy chest.

I brought this very funny film (well, I think it’s funny). A Mighty Wind. I convinced Atara and Ella that it wasn’t about passing gas and they agreed to give it a try and we watched it up to the last scene when Dr. Finley showed up. He was very very funny. I like a funny surgeon. He had the art of enrollment and we scheduled the outpatient surgery for Tues April 21. He said we could definitely film him. Not in surgery actually. Afterwards. The nurses were thrilled that I’d be showing up with a port after the next dose.

I was so tired when we were done and Atara drove me home. I hung out at her house while she made a huge pile of YUM French toast. I downed my fair share and then collapsed on her new couch until I had the energy to make it home. Thanks Ella and Atara! Where the heck would I be today without you????

The next morning I drove the girls to Monsey again (no high school van), missed Naama some more when I passed her house, then met Tsvika at Miriam Tsinman’s house to get an interview with her (and to pick up my sheitel for Pesach). It was a gorgeous spring day and it was good to be out in the beautiful sunshine before we met back up at my house and filmed some very staged Pesach cleaning. Oy. It was cheesy stuff. Triple cheese. Cheese whiz. I’m sure he’ll make it all work in the editing.

After Tsvika called it a day, I did some real Pesach cleaning and threw out 2 garbage bags full of old, broken and useless toys. I’m moving slowly, but getting a lot done.

Yesterday afternoon I brought out the pillows for the porch furniture and sat outside watching Oriel digging in the dirt. Sharon came by and listened to me moan about the difficulties in my life. I had a really good cry and felt much better afterwards. I made a good dinner (turkey Bolognese and whole wheat spaghetti with salad and Mom’s balsamic vinaigrette.) The kids loved it. That’s all I aspire to anymore.

It’s been one year since my diagnosis and I’m still here and doing great. I’ve got lots more to go in the spiritual work that I set out to do last April 1. Every time I get to the top of a mountain, it seems another, bigger mountain looms right in front of me. I’m doing some very deep internal Pesach cleaning. Sometimes you just don’t have a choice. But letting the chometz go, like it or not, is usually a good thing.

Blessings to everyone for a rejuvenating Shabbos.

Love,

Simcha Esther

Greek Lemon Chicken with PotatoesIngredients:

• 3 1/4 - 3 3/4 pound chicken, cut into quarters
• 3 1/2 pounds of potatoes
• juice from 2-3 medium lemons
• 2 teaspoons of salt
• 1 heaping tablespoon of oregano
• 1/2 teaspoon of pepper
• 8 cloves of garlic, finely chopped
• 1/2 cup of olive oil
• 1 1/2 cups of water

Preparation:

Preheat oven to 355°F (180°C).

Rinse the chicken and pat dry. Peel the potatoes and cut into quarters, lengthwise. Salt and pepper the chicken and potatoes. Transfer chicken to a roasting pan, and add potatoes, on and around the chicken. Add oregano, garlic, olive oil, and lemon juice, distributing evenly across the pan. Add water and roast uncovered at 355°F (180°C) for a total of 1 hour and 40 minutes. Half way through (50 minutes), turn the chicken.

Yield: serves 4

Note: Check periodically to make sure there is still a little water in the pan. If needed, add 1/4 to 1/2 cup more.

My Dear Friends, I continued my Pesach cleaning this week. Got deeply into my bathroom and I threw out all my drugs – okay I bagged ‘em up and hid them in the linen closet in case Tsvika wants to film the big purge - the unfinished XL647; the unfinished and the unopened Tarceva; the Imodium for the diarrhea side effect from both of those drugs; the Mylanta, the pepsid, the prescription strength pepsid and prevacid, and the antinausea all for radiation sickness and chemo side effects; the dexamethazone steroid for radiation and chemotherapy; the Colase and Senekot for the constipation from the steroid; the Boroleum for the dry nose from the XL647 and Tarceva; the Ondanestron for the chemo nausea; the Fentonyl opiod patches (2 strengths) for post op back pain (I should probably keep those – they’re quite the trip!); the Melatonin for sleeplessness. I kept the giant bottle of Percocet and the Ativan. But I hid them away on the top shelf. I am not interested in any more side effects. I’m committed to being healthy, vital and symptom free. I also threw out the cushy tushies. We’re just done with that stage of life – and boy am I glad about it! And the pictures of me fat and pregnant with Oriel. They were supposed to incentivize me to keep to my diet. But they never did. They just made me sick to look at them. So now my medicine cabinet is sparse with the things I need to feel beautiful, to smell great and to keep my teeth clean. When I open it I feel unburdened, gorgeous and strong. I LOVE Pesach cleaning!!!!! Then I went to the funeral of my dear friend’s father. Oy. Bad move. I tried so hard to stop the negative thoughts but it was so overwhelming. You can imagine. I basically watched my own funeral for that forty-five minutes. I hope the niftar will beseech the Heavens for rachmanos on my behalf. Chemo on Monday was an emotional challenge. Clare had the day off and she drove me in. It took two pokes and a lot of squeezes to get any blood out of my arm. Then there was this woman waiting in a wheelchair, hooked up to oxygen, and I could feel myself falling deep into a pit. It turned out that my white counts were still very low and it was questionable whether they’d let me have the chemo or not. Ella joined us and demanded an answer. It turns out that at some point over the week they lowered the minimums and I was just under the new minimum. Dr. Krug gave his consent and we three gals went off to Café K for a soup and salad lunch while they mixed my drug. While we were out I got a call from Dr. Krug’s nurse. She told me that I had to have 2 shots of Neupagen – an agent that would stimulate blood cell production. I didn’t want to come into the city for the next two days so she got clearance from my insurance company to deliver the stuff to my house for self injection. What fun!!! When we got back to Sloan they took us right in and put me in a new room. I was so disoriented. The woman in the space next door was making terrible noises. I was crumbling fast. When the nurse came in to place my IV I was a wreck and she asked me if I wanted to see a social worker. I declined. She was none too subtle about my lack of good veins, and even gave the condition a name. I’ve got “sclerosed” veins. Oooooh! Too much chemo. I was pretty panicky in the face of her pessimism. She soaked my arm in hot towels and tried a few spots but she didn’t get anything. Even in the front of my wrist. I didn’t know you could even go in there. Then Clare squeezed my hand and the nurse turned my arm over and over hunting for a good enough place. She tried something on the side of my forearm and made it in. She said it would be good for one more time afterwards. I was crying pretty openly and I basically didn’t stop for about an hour and a half. And I heard myself say “I don’t think there’s any food or drug that could make me feel better right now. Well, maybe some milk and cookies.” So Clare headed down to Duane Reade for a bag of Milano’s and a quart of milk and the first taste was like an elixir. BH” for Duane Reade! I ate half the bag. Then a very sweet woman came by and I recognized her from a few weeks ago. Her name is Judith and I had given her my phone number. She loved how I tied my tichle, and I'd told her how to do it. But this time I whipped it right off (there was a curtain separating us from the rest of the world) and tossed it to Ella (cause I sure didn’t want to mess with my IV) and Ella went to work wrapping up her head (and her gallons of hair) according to my instructions. It was great for the Judith (and for Ella!!!). Then we got into this intense conversation about G-d, Judaism, and more. Ella was awesome! I think we started some deep spiritual repair work for Judith. She shared her fear with us. So much fear! Then she said to me, “You’re gonna make it. You’re gonna kick this cancer.” Then she paused and looked right at me, deep into my eyes and she said “I promise.” I hope we see Judith again. Ella is planning to visit her. They live nearby each other. We all headed out of the city together when the chemo was done at 8:30pm. Atara picked up a pizza in Teaneck and Naama was heading over to Atara’s place for a going away gathering of the girls. Naama was moving to Israel on Wednesday morning (happy for her but so sad for me). I was completely exhausted as soon as we got there and I wanted to collapse on the floor but the bunny was busy eating little hard rabbity things on the rug (apparently they do that). We drank wine, ate pizza and toasted Naama’s journey. Then there was the chocolate cake, the divrei Torah, and the deep sharing. It couldn’t have been a better ending to a perfectly terrible day. I really do have extraordinary women in my life. I am so blessed. Ella stayed over and we accompanied Yoni to his surgery on Tuesday morning. I’m glad she was there. Yoni was glad she was there. Rachel, Yoni’s sister, joined us just as they were finishing up and we all met up with him in recovery. Everything went fine but the pain from the procedure was quite a bit more than he expected. He’s been sequestered upstairs in bed ever since. Good thing the girls are in Monsey for Shabbos! It’ll be a week or two till he’s back in form. Please daven for him for a refuah shleima – Yehonasan Dovid ben Nechama. I don’t even know how I’ve been managing myself and the kids for the last four days. There were two video and more than a few drives to Monsey though, one included Dunkin’ Donuts. That helped. I ate at least two! After Yoni was settled in his quiet nest, I had to give myself the shot. Ella talked me through it over the phone (she’s given lots of rat injections in her day) Whoa! How weird! I crumbled again afterwards. Too much stress. I couldn’t wait for the kids to go to sleep before I crashed in my bed. The next day the Neupogen side effects kicked in, or maybe it was the Zometa (the bone building drug they gave me after the chemo), and I couldn’t get out of bed all day. I was so whoozy and exhausted. Thank goodness Mom took the kids out for dinner to Shelley’s. I was good for nothing. Then I had to do the shot again. This time I had horrible bone pain and a headache, all night, and I was still exhausted. By Thursday afternoon I felt pretty much better but I couldn’t do dinner. Mom came back and made some teriyaki salmon, broccoli and baked potatoes. I ate a tiny bit. When the kids were all in bed at 9:30 I fell asleep, and I slept like that till 6:15 this morning. I felt great when I woke up, drove the girls to Monsey (they missed the bus), cleared my head, and came home to make Shabbos. Clare came to cook with me and Atara dragged me out (Clare was more willing) at 11:45 for a long walk in the park. I am deeply looking forward to Shabbos. It has surely been a week from hell. It will be so quiet here and the food looks amazing. My challah is ready for a brocha, braiding and baking. I will daven for every kind of refuah. Sarah and Atara are both coming for lunch and Clare is coming by Motzei Shabbos. I am so grateful for my good friends. I can’t even imagine where I would be today without them. So, while I’m being squeezed really hard in every other area of my life, Hashem continues to give me the precious gift of their total love. Blessings for deep and loving friendship. Simcha Esther