Thank you for your patience in between posts. It was a challenging week for me, as I will explain later. But first I want to thank you so much for all of your gifts! Thank you for the beautiful Shabbos flowers and a visit from a dear friend last erev Shabbos, and for the cool plant, the schnitzel, the makeup and the unbelievable Shabbos hospitality this past Shabbos! Thank you for the very funny Boynton book and CD, the Jewels CD and the Elyon CD. Thank you for the last minute Balderdash fix (no, I did not win this time), the tire rotation and the seatbelt repair. Thank you so much for all of the nurturing food, prepared with so much love and healing energy. Thank you for the tichel, the gorgeous hand embroidered towel with my name on it and for the homemade wordsearch – how did you all know that I love lavender? Thank you also for the inspirational book by a cancer survivor, the watermelon (good to the last drop!) Thank you for the inspiring articles on Shemiras HaLashon, Asher Yatzar and Hachnassos Kallah, and a big thank you for the kezayis of matzah on Pesach Sheini, baked by R. Kanievsky himself. Many many thanks to everyone who has donated to the Hachnassos Kallah fund on my behalf. So far we have received $7,609. With the matching gift we have raised a total of $15,218, enough to pay for more than 4 weddings of poor and orphan brides in Eretz Yisroel. Yasher Koach! Wow! We’re so close to our initial goal of $18,000!!
And most of all, thank you so very much for all of your davening and all of the incredible segulos. It’s working! I’m feeling so good physically and still no side effects. I am so deeply grateful. Every day that I take these little pills and look in the mirror I am so grateful to have been spared, at least for now, from the ravages of chemotherapy. I surely would have been bald by now, exhausted, sick and weak. The pain in my back is getting a little better each day, and I’m much more active. Every day I’m doing more and more. I’m walking normally, no more limp, and my left leg is much stronger, almost normal. I started standing again this week during davening. Wow! It gives real meaning to the brochos Zokeif Kefufim and Asher Yatzar! With all this new activity, however, I’m finding that I’m so so tired. Also, it’s a big change from the steroid induced adrenalin rush of the past weeks. I’ll be completely off the steroid in 2 days and can’t wait to get it out of my system. I’ve been napping a lot, sometimes twice a day, and I’m tired again by 9:30. I actually slept 6 hours last night – the longest sleep since I can remember. When I get a good couple of hours straight I feel so much better in the morning.
Dad & Fran were here for the long weekend and I was so happy that I made Shabbos for the first time since March! It was very healthy and very yummy. The kids were so excited to get some of their homemade faves and also to see me doing some normal, familiar activities. I made whole wheat challah with the tiniest amount of maple syrup (it was great!), poached salmon with orange and red beet salad, braised chicken with lemon and parsley, steamed kale and beet greens, quinoa salad with chick peas and arugula, sauteed asparagus with onions, and steamed pears. For lunch we had a bison chili buffet and everyone was thrilled. I was totally exhausted from the shopping and the cooking so I’m resting up now for the next round of Shabbos prep.
On the emotional side, the week has been a bit more challenging. I’m much better today, but I was feeling really overwhelmed by everything – so many intense experiences, constantly changing routines, tons of calls, emails, visits, new diet, scary drugs and so much more. And I was feeling so much better physically so I felt obligated to jump right back into my life, but even the thought of that left me overwhelmed. And then there was that guilt for taking, taking, taking when so many people need more than I do. All of it was just so incredibly overwhelming. I was feeling depressed, disoriented, irritable and angry. Mostly angry with myself for being so irritable and angry.
And I’ve been sinking back into old ugly habits and every time that happened the worse I felt, and the farther I found myself from that awesome experience of closeness to Hashem. I was depressed about the loss of all the spiritual ground I had taken over the past weeks and truly fearful that it was gone forever. I wanted to go back in time. I was nostalgic for the first days when I first was diagnosed. I missed the cocoon world of the hospital and the laser beam intensity of life. I missed the easy open hunger I had to connect to everyone and every experience. Now I was putting up those old familiar walls.
Over the course of the week I talked about my bad mood with a few people. I talked to my Mom. She reminded me that I’ve been through hell and I should not even think about jumping right back into the responsibilities of life, that I should take things slow, take on a little bit at a time. Yes! I was so comforted to hear that. And then I realized that I was also so afraid that when life got back to normal she and I would find ourselves back in the old difficult relationship of our past. I didn’t want her to leave. It’s been so wonderful having my mother here. She said she was also afraid of losing the new closeness we’ve been sharing and that she has no intention of leaving now. That was a tremendous comfort to me.
I talked with Megan at Sloan Kettering. She also reminded me that I’ve been through so many stressful experiences in such a short time and that now that life is slowing down some, I need to do things to take care of myself, things that make me feel relaxed. I thought about some of the experiences of the past weeks and I actually couldn’t believe how much I’ve been through. I started to itemize. The emergency room, the MRI, the cancer diagnosis, the unexpected four day hospital stay, the numerous diagnostic tests, the detailed diagnosis, telling my parents, telling the kids, telling friends, contemplating treatment, radiation therapy, all the other drugs, handing over my domestic responsibilities to others, second opinions, further diagnostic tests, surgery, another unexpected hospital stay, intense pain, narcotics…. I’m sure that’s not all, but all this in only 6 weeks! And then there was everyone else’s reactions to deal with, and all the good stuff too, like an avalanche of chesed and so many unbelievable nisim. After talking with Megan it was good to get some perspective. I understand that my need for time alone is real and that I need to honor that. So, I’ll probably be laying a little low for a while. Don’t worry. I’m just taking care of myself and that’s a good thing.
On Thursday I went back to Hackensack Hospital for my follow up consultation with Dr. Gejerman. I went in by myself while Yoni parked the car. As I walked down the corridors past Nuclear Medicine and Radiology on my way to Radiation Oncology I was getting choked up. It had been about a month since I’d been there for my daily dose of radiation and being back reminded me of those first days and weeks. I walked past the department where I had my abdominal ultrasound, the department where I had my bone scan, the hallway to the MRI and the CAT scans. An orderly came out of the elevator pushing a man on a gurney. That was me not so long ago. I forgot. Fragments of experiences flashed through my memory. I had forgotten what I was feeling in those first few days and I was feeling it again. I forgot how scared I was, how grateful I was and how much love I felt for everyone who did anything for me. I missed it. I much preferred it to depression and anger.
Yoni and I waited for a while in the reception area. The subject of “what interests me” came up and I was sad to admit that I didn’t know what interested me anymore. So many things I’d dedicated my life to were bankrupt for me now. I thought about it a lot while we sat there and I thought that maybe I could hold onto the preciousness of life if I worked with other people with cancer. It’s so easy to forget how precious each moment is, but facing death is a great way to get present, so it made sense to me. Then they called us into an exam room.
We spoke with Dr. G. about how the surgery went, how I’m feeling, how treatment is going. And then I told him I was feeling kind of down. And then he told me that in the beginning there’s this period of intense activity, between diagnosis and setting up treatment and then when life starts to slow down you finally have a chance to feel your feelings and there’s a lot to process. He totally got it and I got it again and I wanted to cry. He told me that now would be a good time to find someone to talk to, someone who’s been through it too. Then he said that one day he was sure that I’d be one of those people who would be there to help others through it. And I knew he was right, on both points.
I cried the whole way home, releasing all of my thoughts and feelings, and mostly my sadness over losing that intense closeness with G-d. Yoni reminded me that from a spiritual perspective this is also how it’s supposed to be. It’s the primal pattern from the Garden of Eden. Hashem created the garden and He plopped us in there and we got ourselves a blissfully good taste of paradise. It was a free ride and it was a good one. Then we got ourselves kicked out so we could spend the rest of time building and earning the experience for ourselves, because isn’t it sweeter when we earn/learn something on our own? So, here I am, I had a really good taste, and it was sort of a free gift, and now, if I want it, I have to earn it for myself. And today, I’m actually excited about that. Yesterday I wasn’t. I didn’t think I COULD earn it. I believed I was too broken. But today I’m thinking that all that is just the yetzer hara, my evil inclination, doing his job, trying to thwart my spiritual growth and connection. Today I’m seeing strong glimmers of possibility and I’ve taken some risks, broken down some walls, and immediately felt connected in those moments. At the very least, my negative patterns of behavior are disgusting to me. That’s a good start. Recognizing the negative behavior is probably 90% of the battle. I hope so anyway.
Anyway, the truth is, I’ve taken lots of ground and some things are immutable. BH”. I’ve made some changes over the last 8 weeks that I never would have made without this opportunity. I’ve made shalom with so many people, I’m davening with kavanah, I’m much more respectful of my parents, I’m cleaning up my messes with people, I’m guarding my tongue, I’m more careful about my brochos, I’m saying Tehillim, I’m fixing my eating. It’s a good start.
I have a ways to go still, especially in coming from chesed, letting go of anger and generating simcha. All related themes. So, I haven’t been so perfect in my commitment to do 18 acts of unplanned chesed every day until Shavuos. Last night I refined it a bit more, got more specific, and now I’m motivated again. I’ve broken the daily 18 down as follows: tell 5 people that I love them; acknowledge 5 people for their unique gifts; say yes to 5 things that would be good for someone else; give away 3 things. So far so good and I’m having fun. A number of people emailed me that they’re taking something on from now till Shavuos to be part of Project Echad. It’s great stuff! Please share it with everyone via the Guestbook. It really makes a difference.
Please keep davening for me! We have two weeks until my CAT scans on Erev Shavuos, and we need to see that the tumors are shrinking. Please daven that they should be totally gone.
Have a great week, full of simcha and love!!!
I love you!!
Monday, May 19, 2008
Dearest Friends,
I cannot share anything without first expressing my gratitude for so many things, so many people, so much love! Thank you so much for another week of delicious meals for my family, for myself, for Shabbos Kodesh! Thank you for the totally outrageous evening of laughter and thank you for the Scrabble in between appointments. Thank you for the emergency throat cultures and the incredible challah, the beautiful Shabbos flowers, the inspiring book all about Simcha, the homework helpers, the Shabbos playdate drop offs and fun on the trampoline! And thank you for the playdates! Thank you for the wonderful visits and thank you so so much for all of your inspiring messages.
I cannot begin to express my hakaras hatov for all of the tefilos, mitzvos and segulos that are so obviously affecting things in Shamayim. It is awesome and profoundly moving!!!!
I began my preparations for my new drug therapy with a bunch of friends on Tuesday night. We gathered for some laughter therapy and comedy improv led by my dear friend Esther Rachel. I laughed heartily while everyone entertained me with some mighty funny stuff. Thank you all for being such good sports!
As I mentioned previously, Wednesday morning went very smoothly. I really enjoyed the ride into the city, even with all the traffic. Driving down 3rd Avenue I saw a lady with a fabulous African print skirt. It was an amazing skirt with multiple tiers full of color, full of life, and I even told Yoni to check out the living skirt. A few minutes later we pulled up in front of 53rd and 3rd. Yoni dropped me off and went to park the car. When I got to the elevators she was there! The cool lady in the awesome skirt! I told her I loved her skirt and she was so flattered. I asked her where she got it – TJ MAXX!! Probably less than 30 bucks! Well, I’m there first chance I get.
They took me early for my EKG and blood work and my doctor was running right on time for his consultation with me after that. All tests came back fine, so we got the go ahead to start the meds. That was a very big moment. Megan counted them out, brought me some water, then showed me this sheet I have to fill out every time I take a dose. I told her I had to say a little prayer before swallowing the pills. She was cool with that. So I said the y'hi ratzon, swallowed the 6 little pills, then davened like crazy for Hashem to heal me with His white light, to use this medicine as a shaliach, a messenger, for His healing, and that nothing bad should happen to the healthy parts of my body, only good. And in that moment I started to have a powerful relationship to my drug. It doesn’t have a name. It’s referred to as XL647, or XL by my docs. Sounds like one of those fancy cars, no? But the gematria, the Hebrew numerical equivalent, of 647 (Yoni was quick to point out), is awesome. First there is TiRaMeZ = she will give hints, allusions, about the future (prophecy); then there’s TiZaMeR = she will sing; and finally we have TiZaReM = she will flow. Well, here we go! La la la!!!! I love my drug. Hashem picked this one just for me. It could have been so much worse. I pray that He will put His healing light into this XL647 and that it will work beyond everyone’s hopes or expectations. He can do anything with anything.
We had several hours to wait in the middle of the day and my friend Ella came, subjecting herself to some pretty competitive Scrabble. We had to stop in the middle, lucky for her! We had a great talk about how challenging it’s been for me to receive so much from so many people. I told her that I, myself, have a hard time giving. I have this scarcity thing going on that leaves me terrified to give away my resources, whether it be time, stuff, money, etc. It makes sense that I’d have a hard time receiving if I feel guilty about not being able to really give fully. We talked about things I could do to start trusting in abudance. At the same time, I’m learning about macrobiotics, and funny enough, it was recommended to me that I share my food with my family. Well, hah! I’d been hording my specially prepared food every day for weeks for fear that I wouldn’t have enough and I’d starve to death. Hah again! Then we talked about fear, and how we manifest the things we are afraid of. Well, I manifest scarcity, when I could be manifesting abundance. So, I’m practicing sharing my very specially prepared macrobiotic meals. There’s not much else in the house I can eat, at least that’s what I think. It’s not easy. I’m hungry you know. But I’m taking less food at a time, and eating less, and already I feel better. I wonder if overeating is part of the scarcity thing. Like I’m really afraid I’ll starve, so I fill up while I can. Not a good way to live. So, I’m eating less, and sharing a little more. Baby steps.
Dr. Lis (who performed my surgery last week) came to visit me while we were waiting. He reported that some of the biopsies were back, and while the vertebrae were empty, there were still cancer cells in the surrounding walls. He was very confident that with the XL it would all get under control. I wondered what he’d say if it just downright disappeared.
After our long wait we went for the follow up EKG (all fine) and end of the day blood work. While I’m sitting there having my blood drawn we hear this conversation coming from the cubicle next to us. It went something like this:
“How was your mother’s day?”
“It was the BEST mother’s day ever – I’m still here! They told me I had 2 weeks to live. They went to take out my spleen and who knows what else and when they opened me up they found another huge tumor and they couldn’t operate. My kids and my mom were devastated and I said – hey! I guess G-d didn’t want me to lose my spleen just now – and I didn’t want to lose my spleen either! And here I am a year later and I never felt better!”
And the people she was with were so floored by her energy and her attitude and they couldn’t believe that she had a 31 year old daughter. And she went on and on about the gift of life that she’d gotten, finally ending with, “Hey, I say every day above ground is a good day!” And she meant it.
On my way out I peeked in. I couldn’t help it. She herself didn’t look a day over 31 and she must have been 50. And I’m sure she’d been through the ringer, but she was on fire and I said “G-d bless you! You’re awesome!” and she blessed me right back.
That night I felt all the organs in my chest sort of burning, or tingling. Then the burn moved up my spine from the base of my neck. It freaked me out a little, but I decided it was just the medicine doing its work. I haven’t felt that since.
On Friday morning I went for an acupuncture treatment (highly recommended by MSK alternative medicine doc and scientifically proven to help reduce symptoms of chemotherapy). And I’m laying there, with pins stuck all over me, and I’m thinking about how hard it is to hold onto this relationship with Hashem. And I thought about this piece from a shiur of R. Aaron’s that I heard a long time ago. It was about prayer. In Hebrew to pray is l’hitpalel. It’s a reflexive verb, means literally to pray oneself. And I started to understand it in a way I never had before. I understood it as making myself a vessel, a keili, an antenna for Hashem. Through prayer I create the space for love to flow. And then I thought about all the mitzvos, I thought about the difference between doing mitzvos and being the mitzvah, simply being a neshama, a soul, yearning to be close to it’s Creator.
Then I thought about Hashem’s question in Gan Eden after Adam ate the fruit and Adam hid himself. Hashem said “where are you?” And we ask that question all the time. Where is Hashem? But maybe Hashem is just here all the time, shining His light so intensely on us in every moment, but maybe we are all just hiding, or maybe we put Hashem into hiding. We shmutz up our neshamas and then we build these walls of shame and we prevent Him from shining His light, his infinite love on us. It’s there, we just can’t receive it. We feel like we don’t deserve to receive it, so the receiving gets muddied, then the whole vessel is in breakdown, and then there’s no keili for Hashem to interact.
Maybe it’s the same in our relationships with each other – giving and receiving – so many of us can’t really receive, then we can’t truly give either, and the whole thing goes into breakdown. When we start to fix our keilim, with a sincere desire to purify our neshamos, Hashem is there full force, helping us, breaking down the walls. Like a child who comes to his parent and he’s been so naughty and the parent is beside himself, but the child shows one tiny sign of remorse, one hint that he wants to be close, and all is forgotten in a big tight embrace. Hashem wants to forgive us so badly. We have to just open ourselves up for that. Hineni! Here I am!!
On Shabbos morning I woke up feeling significantly better. I was able to really get around and I felt like all the pain in my back may actually completely disappear one day very soon. After so many months of continuous back pain it was such a relief to think that way. I had a nap after lunch and slept so well. When I woke up I felt even better. Poo, poo, poo! It was so great hanging out with everyone on Shabbos afternoon and I was able to get in all of my davening, my 10 tehillim and the Igeres HaRamban. I look forward to davening now. I never did before. I love it. It’s my time to look for Hashem.
Ladies, please note that every Shabbos afternoon at 5:30 Shanny Gejerman gives a really amazing shiur at her house in the zechus of my refuah sheleima, my complete healing. For the past few weeks she has been discussing passages from the Torah that focus on the period between Pesach and Shavuous. Shanny’s shiurim are truly not to be missed.
Dad and Fran didn’t make it for Shabbos. Their flight was delayed and delayed and delayed over the course of the entire afternoon until we all gave up. But yay! They were able to get tickets to come for this coming Shabbos. I decided to make Shabbos this week. It’s been such a long time. I planned the menu already and I’m making 1 or 2 things each day this week to test my endurance. I’m sure it’ll be great.
I had a really good day today physically, another story emotionally. No trouble getting out of bed. I even made pancakes for the kids! They were so happy to see me doing something normal again, but I might have overdone it because a terrible mood started to come over me while I was eating my oatmeal. I talked through a lot of things with Mom. That helped a lot. My life keeps swinging from one change to another, and feeling better means more change. I’m so afraid of losing the ground that I’ve won when I take on the daily activities of life again and I’m so afraid of my life devolving back into “bad” patterns. I don’t want my old life back. I’m also overwhelmed thinking about all the things that I would normally do in a day that I haven’t done in such a long time. My mom warned me that I’ve been through a lot and I need to take it slow. That was good advice. It felt good to just voice my feelings with her.
Later I drove a little and walked 10 minutes from the car into the park where my Mom was with my kids riding their bikes. I thought a little walk might lift my bad mood. The kids couldn’t wait to show me the geese sitting on their eggs. They were so happy that I was up and out with them, but by the time my brother David came to visit around lunch time I was feeling pretty foul and all I could do was apologize for it. I could think of at least 20 reasons to explain it, but who knows. It was just a bad mood. I felt a little better after eating lunch and then I promptly fell asleep in the middle of a conversation, sitting upright in a chair, in the living room. When I woke up I felt a lot better and I went with Mom & David & the kids to the library. It was a very busy day! Tonight I took off the narcotic patch. Maybe I’ll feel even better tomorrow. It’ll be good not to need any pain killers.
It’s day 5 on the XL647 and still, so far so good. Bad mood is NOT on the list of potential side effects. I am scheduled for CAT scans on Sunday morning, erev Shavuos, to see if/how the drug is working. They expect to see shrinking tumors. I am davening to find no tumors. I will get the results on Wednesday following Yom Tov. How perfect! I love that there is this fixed appointment in time, corresponding to sefira, to really work towards. And that is exactly what I’m supposed to be doing right now!
On the way home from the city on Wednesday I had this flash. What if we all take on something big between now and Shavuos? And what if we really support each other to be successful? A number of people, and communities of people, have been looking at taking on a mitzvah or a group project in my zechus. Maybe this will be inspiring:
For lack of a catchier phrase, let’s call it the Echad Project. It goes like this.
From now until Shavuos we each take on one mitzvah, one middah, the thing that looks so hard, so impossible to fix, and break it! Take on a daily activity designed to break through a barrier. I’ll share the one I came up with as an example. Earlier I shared that coming from scarcity I have real difficulty giving. So, I’m taking on doing 18 unplanned, spontaneous acts of chesed every day (and I’ll bet you Hashem will send me some great opportunities to test myself against!) And if He doesn’t, there’s always giving tzeduka with a smile to the guy that’s banging on my door, hug someone who needs it and give them a big big kiss on the cheek, acknowledging someone for their unique gifts, saying hello to a stranger or someone I normally wouldn’t greet, saying I love you when it’s hard, offering emotional support, calling someone in pain, stopping everything to say some Tehillim or a tefila for someone who needs it. Maybe 18 isn’t even enough! I’m excited to see what comes up to help me generate 18 daily extra acts of chesed.
Once you’ve come up with your daily practice, DECLARE IT, SHARE IT. Don’t do it alone!! Get a partner, a chavreusa, and/or a coach. Speak daily to stay focused. Help each other stay committed each day – it’s not so many days. Help each other to recommit if there is a day of failure. Don’t let your partner quit because they had a bad day! Teshuva takes time. Two steps forward, one step back. Learn from the mistakes and keep going for the goal. Be open to Divine intervention. Daven for it! Post your breakthroughs on the Guestbook and inspire everyone to keep going!
Then we’ll all stand so clean and pure and holy together receiving the Torah on Shavuos, as one, a nation of unique individuals, bound together in the deepest love relationship with Hakadosh Boruch Hu. We learned from the Chofetz Chaim in A Lesson A Day that “it was in the very moment when Hashem saw us camped as one in the dessert opposite Har Sinai that He said ‘The moment when they shall receive the Torah has arrived’, for as long as peace dwelled amongst them, the Divine Presence dwelled amongst them. It is written, ‘He became King over Jeshurun when the numbers of the nation were gathered – the tribes of Israel in unity.’ When is G-d Israel’s King in the fullest sense, and when does His presence dwell among them? – when they are united.”
We merited to receive the Torah when Hashem saw us camped as one in the dessert. He saw achdus, one nation, and that was the moment when He decided we were ready for the ultimate relationship. Let’s merit to receive that ultimate relationship again in just a few short weeks! It will be a zechus for all of us.
With much much love, Simcha Esther
Friday, May 16, 2008
Dearest Friends,
I don't have a long time to write, as Shabbos is right around the corner, and Dad and Fran are coming for the weekend.
Everything went very well on Wednesday. Lots of traffic, but still we arrived early and sailed through all of our appointments. I started the pills at 11:39am and I am now in my third day. So far, so good.
My back is feeling better each day and Dr. Lis, who performed the surgery, was very very positive when we saw him in between appointments on Wednesday. He said he had to put in a LOT of cement. The vertabrae were pretty well eaten away. There are still cancerous cells in the walls of the bone where they took samples, but this was expected, and the drug should take care of it.
Please G-d this medication will work beyond all medical expectations, and I won't have any dangerous side effects that would force me to change treatment, 'cause this targeted stuff is a walk in the park compared to traditional chemotherapy.
I have so much more to share, and I really can't wait to write, but time does not allow at the moment.
