You know that thing “follow the bouncing ball”? Well, that’s me. I’m the bouncing ball and I’m doing great. Back in the saddle again! Baruch Hashem. Shabbos was pretty rough, and the horrible weather didn’t help, nor the fact that one of the kids pulled the plug on our main light source in the living room. It was DARK to say the least. I cried right into Shabbos and well into the day.
When the rain started coming down I thought I would go crazy from fear, anxiety and depression. Then Mom came to me and said “you know, I have this really strong urge to take off my shoes and go running in the rain”. Well, that was something! Bubba is no spring chicken you know but she sure knows how to surprise me. So out she went, barefoot in the rain, and Yoni ran out after her, and then the kids. And they managed to get me out there too and we danced and jumped and ran around the yard until we were completely drenched.
Things picked up after that and I beat Yoni and Akiva (our oldest) at Scrabble – 196. Not bad for a three man game! Then Atara came over, soaked, and it was so good to see her and sit in the kitchen drinking tea and talking about everything. Na’ama was with us for Shabbos, and soon all the women were gathered together for tea and sympathy. It was very healing.
It was Batsheva’s birthday (our oldest daughter) and before the third meal we played a rousing game of musical chairs (Yoni sang some great niggunim and it was ever so competitive!) Oriel, our youngest, gave us a good laugh in the first round when the music stopped. While everyone scrambled for a chair in the living room he took off through the dining room and grabbed himself a seat in the kitchen. Pretty ingenious.
Then it was duck duck goose. Bubba and Akiva had me in stitches facing each other down in the last round. When Yoni left for shul I plopped down in Akiva’s bed and sang myself silly. Sometimes singing is the best prayer I have.
So, with many thanks to Bubba for starting the turnaround, I’m back in hope, faith and denial. I even slept finally Motzei Shabbos for six hours straight. And I got through it, the set back, the thing I dreaded so deeply.
I’m sure I am strengthened having passed through it emotionally. But while I was in it, desperately trying to pull myself out of the pit, it helped to remind myself that this is my soul journey. However it goes, this is what is meant to be. This is what is meant to be for all of us. And, as Brad said, “we have to approach our pain and fear and stand in the middle of it, accepting the fear, terror, pain and tears as much a part of us as the joy.” And then I realized that I can’t plan the future for my kids either. Their lives are their journey. I can’t protect them from their life story. It was quite a relief to let go of controlling life to protect them from pain.
I thought about what makes me happy. I thought about all the wonderful things in the material world that we think we’re going to want to have and experience when our time is nearly up. But it’s not like that at all really. I’m not interested in the fancy trips, the fancy food, the Disneyworld experiences. I see that when I am expressing my G-d given gifts, producing something that makes a difference, touching someone deeply, getting close to G-d, then I feel really alive, really fulfilled, And these opportunities are always available. And they never break the bank. On the contrary, they fill up the account.
Then I thought about this attachment we have to physical reality, to sensorial experience. We’re all children really. We come into this world all material needs and wants. If we do our growing up well, then G-d willing, before it’s too late, we start to realize that the material temptations are just that – temptations. They get in the way of the real meaning in life. Hashem in His infinite wisdom gives us opportunities to snap out of our distorted perspective, to grow from infants to adults. He puts challenges in front of us to help us grasp the delicacies of spiritual pursuits.
Sunday was Akiva’s birthday and in the morning we were hanging out and I asked him what makes him really happy. I expected him to rattle off the usual, pizza, cake, soda, roller coasters. I was deeply moved when he thought about it for a minute and then said “Most things only make me happy for a little while.” Then he thought some more and said, “Oriel makes me happy.” And that made me happy. And Akiva loved everybody all day after that. He even kissed me a few times and didn’t blame it on anyone else! It’s quite a charge to acknowledge the love energy. It’s love that lasts eternally.
And I really got that we never die really. Our souls are eternal and whenever it’s my time to go, whoever is left behind in this weird reality, can be comforted to know that we are always connected, the love is always accessible.
I’ve redoubled my davening efforts and it’s been wonderful. It’s amazing how quickly I am lulled back to sleep when things are smooth. This was a great wake up call. I realize that my need to know the outcome of this trial is motivated largely by my desire to go back to sleep. I love to sleep. But I really don’t want to go back to sleep. So, once again, there is tremendous gratitude for the challenge.
Many thanks to our special friends for the beautiful flowers, the tasty salsa, the gorgeous chocolate cake, the awesome challah and the baseball game. I am truly blessed!
We are very excited to announce the following:
The Grand Rebbe of Dushinsky, Rav Yosev Tzvi Dushinsky, Shlita, Chief Rabbi of the Eida Chareidis of Yerusholayim, will, IYH, be visiting Passaic tomorrow night, September 9, from 8 to 11pm. The Rebbe will be available for Kvitlach, Brochos, and private consultations. This is a very unique opportunity for yourself and for your family. The Rebbe will be at the home of Dr. and Mrs. Michael and Annie Rosen, 199 Howard Avenue, Passaic. Private consultations with the Rebbe can also be arranged by calling 917-623-0674 (Dr. Rosen) or 917-578-2333 (Rabbi Templer). Light refreshments will be served.
With blessings for a wonderful week of love and dveykus!
Simcha Esther
PS - sorry about not posting the pics. The files were too big to transfer.
Friday, September 5, 2008
Hi Everybody,
The XL has stopped working. CT scans from Tuesday show very slight tumor growth.
Megan started the conversation. She stressed over and over and over that the growth is so minimal, that there’s nothing to be worried about, but it’s just a sign that it’s time to change therapy. She said that Dr. Krug wanted to start me on Tarceva and to see how it goes for a month. If it doesn’t reverse or stop the growth, then we will start chemotherapy.
Megan was great. She knows how to talk to me, what to say, what not to say. She is truly gifted. She left Yoni and I alone for a few minutes to process the information and to start to think about what questions we had for Dr. Krug. He met with us for a long time. He doesn’t know how I’ll respond to the new drug. There is no data on my particular presentation of this mutation. He said there are other test trials in the works, but Tarceva and/or chemo, have to be tried first in order to qualify. He said I’m not in any imminent danger, I’m healthy, have no symptoms, but from his perspective chemo will be necessary sooner or later. Megan said that patients with lung cancer who have chemotherapy live longer.
I just looked at them and shared what an emotional and spiritual dilemma this presents. I said I do everything I can to avoid looking at statistics, because I don’t want to live into them. Dr. Krug said that was a good idea. But at the same time it is almost impossible to live not knowing when the game will be called. Dr. Krug said he tries not to think about what time a patient has left. He said it's really impossible to know, unless they are clearly at the end. And he promised me that he would tell me when I’m there so I could put things in order. I know he would tell me. IY'H, he won't have to.
The challenge at this moment is to live fully in the present, because thinking about when the future might end makes it impossible to live at all. Dr. Krug got it. I asked him how it is for him, surrounded by death all the time. He said it’s teaching him to appreciate the moments. He said he tries really really hard to live in the present. And it’s hard. And I know he meant it. It was a profound moment of shared humanity.
Well, looks like our Israel trip is on hold. The news wasn’t what we were expecting, but in my typical way I took it all in and fell apart later. And I had this awful pain in my hip, which only made matters worse.
The falling apart wasn’t/isn’t so bad. I’m still smiling, laughing, living. I am grateful that I immediately went to what can I do to fight harder. I must admit that my faith was shaken. Sometimes I just can’t believe how much Hashem is laying on me. But I davened and I cried and I begged and I read many chapters on simcha and many halachos of shmiras halashon, and many chapters on Kabbalah from the Song of My Soul (Aidel Epstein posted in my Guestbook that the Lubavitcher Rebbe said that learning Chassidus is a cure for cancer, and Abby Messer reminded me that there is an idea on one’s birthday to make a hachlata – so I started learning this sefer on Koach Av).
When Yoni and I both couldn’t sleep we stayed up and talked in the middle of the night. I've been playing harder with my kids, and we went walking in the park, and we went to Target and I bought pink socks, and I listened to the Yankees beating the Tampa Bay Rays with my son, and I went to Dr. Gatto and I cried while he tapped and talked and did everything he could to snap me back into thinking positive thoughts and putting my eye on healing myself from this.
Last night I took my Tarceva and meditated for an hour on the new drug moving through my body, killing the cancer while Darcy gave me a therapeutic massage.
I slept a little better last night and when I woke up at 4:30 to the dark thoughts I fought the negative beliefs with projected images of myself old and wrinkled, holding a grandchild, and I saw myself at my son’s bar mitzvah and battled every negative thought with a positive one. I surrounded myself with Hashem's white healing light and I put myself into my secret and separate place.
It is all in Hashem’s hands. I concentrated on His chesed, on all the good in this moment, on how close He is to me, how motivated I am again to continue my teshuva. Happy Elul! Ani le dodi v’dodi li – He is very very close and this is His divine will. He chose this path for me for my highest good, so I can fix myself, live in the present, the highest way possible.
The chapter I read last night in Rebbetzin Feldbrand’s book is all about suffering, how human difficulty in this world buys us the most delicious rewards in the next. How it is necessary to do the soul cleaning work here in order to merit the highest eternity there. It’s not new information, but it is incredibly inspiring to be reminded to stand there. We all need to stand there. Everyone has their suffering.
The rest of the week was quite eventful. We were blessed to see our dear friend Reva and her beautiful new baby last Shabbos. Thank you for the beautiful herbs! On Sunday morning we went down to Yoni’s parent’s farm outside of Baltimore and we had a wonderful time visiting with Bubby and Zaydie, playing in the glorious river, riding on the golf cart, feeding the goats and visiting with Aunt Cheryl, Uncle Shalom and some of the cousins. It was a terrific respite to be out in nature, away from everything.
Uncle David came out on Tuesday to help Mom with the kids while Yoni and I went into the city. I met with Judith Kelman at Sloan Kettering in between appointments. Judith started Visible Ink, a writing program for MSK patients. She’s helping me finish up an essay I started in my last writing workshop that I hope to submit to a competition. She told me about some of her incredibly inspiring mentees and she’s hoping to put together a reading of everyone’s work in the near future. I told her I have 40 pages of a book started and over eighty pages of my blog. She said she can’t get over how prolific everyone is. Well that’s how it is when time is of the essence.
School started on Wednesday for three of my kids. My younger daughter started first grade and she was so brave! She just walked off holding hands with her big sister and neither one of them even turned back to say goodbye! Now that’s a high way to live, walk straight into every new adventure!
Thank you so much for all the email and guestbook entries. Please, please, please keep them coming. They are a lifeline for me. Showers of love that make me so happy!
We’re still collecting for the Hachnasos Kallah fund. It’s a very special segula for rafua. Checks can be made out to the FJC and sent to us at 86 Elmwood Avenue, Passaic, NJ 07055.
The pain in my hip is pretty much gone. Maybe it’s a sign. I’ll take it as a siman that I’m going to live.
Yay! It’s cooking time! Besides the whole roast chicken with lemon, garlic and thyme, I’m making rashta, a Lebanese lentil and whole wheat noodle soup, and a pot of chili. Here’s my version of my family's favorite chili, from The New Basics Cookbook by Julee Rosso and Sheila Lukins. It’s a good one (serves 8 to 12):
4 tbsp expeller pressed organic canola oil 2 onions, chopped 4 tsp good quality chili powder ¼ tsp chipotle chili powder (optional, use more or less according to taste – it’s very hot!) 4 tsp ground cumin 2 tsp dried oregano 2 tsp dried red pepper flakes (you can omit this if using chipotle chili) 4 lbs. organic beef stew or bison cut into ½ inch cubes 4 cups organic crushed tomatoes 3 ½ cups stock (use organic vegetable stock, or homemade organic chicken or beef stock) ½ cup tomato paste 2 cans organic kidney beans Salt and freshly ground pepper to taste
Garnishes: sliced scallions, tomatoes, sliced olives, diced red peppers. Serve with: steamed brown rice, homemade guacamole, chips and salsa
1. Heat half the oil in a heavy pot. Add onion, chili powder, cumin, oregano, red pepper flakes. Cook over medium low heat for 5 minutes.
2. Add remaining oil and brown meat over high heat in batches – don’t crowd the pot or you'll stew your meat instead of browning it nicely.
3. Stir in tomatoes, stock, tomato paste and beans, and simmer UNCOVERED at least 1 ¾ hours until meat is tender and broth is thickened. Season with salt and pepper.
4. Serve with toppings and sides.
I leave my chili on the blech just barely simmering overnight. It’s great for Shabbos lunch and the leftovers are divine.
I’m so grateful for Shabbos. It is such a big hug. I need to just rest in that hug.
I’ll be posting photos shortly for everyone to enjoy.
With much love, Simcha Esther
Friday, August 29, 2008
Hi Everyone!!
I had a great week with the kids. It was a real gift to put my to do list aside and just go out and have fun. On Sunday I had decided to practice patience first thing in the morning, when the children usually pile into my bed. Instead of throwing them out when they started burrowing under the covers and coming out the other end, I gave them a fun challenge. I said that whoever gets dressed and cleans up the house the most gets to pick what we’re doing today. Well, they were all amazing, the whole house was put together in minutes, so I had to modify the goal. We ended up going to Funtime Junction, which wasn’t as bad as it usually is and everyone was happy. I’m very talented at punching out the ducks and I got lots of prize tickets! Moshe and Jeni Handel were visiting from Beit Shemesh with their kids and they came to us for a barbeque. It was so good to see them! My kids kept the helping spirit up all day and through the week.
On Monday we took care of all the back to school things, school supplies, clothes, and we even took care of everyone’s expired passports. On Tuesday we drove into NYC and spent the day with Uncle David at the Central Park Zoo. The rest of the world was there also, but the kids had a great time jumping on the lily pads and climbing in and out of the turtle shells and giant eggs.
On Wednesday Yoni went hunting for bagels while Mom and I waited in the car with the kids near Main Avenue. I saw a teenage boy in a kippa talking to another boy in black hat, white shirt and black pants. The first boy lit up a cigarette and I felt my heart start racing. I hesitated, justified, hemmed and hawed, but Mom pushed me, and I jumped out of the car and went up to him. I didn’t know what to say, so I just started talking. It went something like this:
“I don’t want to intrude, but I just have to tell you that lung cancer is the number one cancer and you may think you’ll never get it but I have it and I have four kids under eleven and I don’t want you to have to go to Sloan Kettering and have radiation therapy and chemotherapy and never see your kids grow up…” and before I wound down he dropped the cigarette, stomped it out and just stared at me with these big brown eyes. And I walked away hoping that he’d never light up another cigarette again. I waved at him and his friend as we pulled away with our bagels and he timidly waved back. Then my husband said, “You know who that is?” Well, it turned out that the boy is the son of one of our rabbis. I had no idea.
From there we drove to The Land of Make Believe and we played all day in the unbelievably gorgeous weather. We floated down the lazy river ride together, and then we watched our older daughter all dressed up as a princess in the play in front of the big castle. We rode on all the rides until the sun started to go down and the park was closing. The kids were angels all the way home.
I’m really enjoying my children so much during these last licks of summer. I keep thinking about something Randy Pausch said in his blog. When he was first diagnosed his kids were so young and he knew that they wouldn’t remember him much. So he took every opportunity to have experiences with them that would make a deep and lasting impression. He swam with the dolphins with one of his kids, and he took his boys to Disney World.
All the time I’m thinking about what impressions I’m leaving on my kids in each moment. It’s great really and we’re enjoying each other so much. Everyone’s been so helpful these past few weeks, and yesterday my oldest son gave me a big kiss and a hug as I was leaving the house. Then he jumped back, smiled, and said “that wasn’t me!” But it was, and we both loved it.
Time is flying. I can’t believe it’s been five months already since my diagnosis. It’s been rich and deep, intense and awesome. But life is moving so fast. It’s strange to get present to the rapid movement of time. It all helps me practice making the most of each moment before it’s passed. I have a habit of living backwards, savoring the moments only after they’ve already passed. I wonder what life tastes like lived wholly and intensely in the moment. What joy that must be!
Yesterday I met with Dr. Gatto and had a good long session. He’s working very very hard to help me let go of all of my negative thoughts. Why not? Every sefer I pick up these days seems to implore me to be b’simcha. It’s the only medicine. I took the boys to the pediatrician afterwards and my little one was so funny making conversation with the doctor. But when he announced that “My mommy’s back hurts”, the doctor checked me out very closely for a reaction. The staff apparently had all been informed about my situation. They were all a little sad. I was fine, and matter-of-factly explained that I’m not having chemotherapy and they needn’t fear me getting sick from the kids’ vaccines. Wow. Every day I’m grateful for my health. I feel terrific.
Last night was the commencement of my Hebrew birthday – Kaf Ches Av, Koach. Koach is strength. How great is that? Yoni and I went into the city and cruised around Manhattan with NY Waterway as the sun set and all the lights came on. It was breathtaking! The native New Yorker in me gushed with pride at the majesty of the skyline at dusk. Just at the end, as we approached the dock at 38th street, a fireworks display started next to the Verrazano Bridge and I felt like it was just for me!
Clare came to cook with me this morning and I introduced her to cholent. Yes, we’re having cholent, and potato kugel, can you believe it? Well, it’s organic beef and everything else, but it’s all cholent! And as for the potato kugel, well, it turns out that last week’s kugel was NOT from Heidi Wolf, and now we don’t know who it did come from (I hope the donor will come forward so I can properly thank you!). So, when my doorbell rang a little while ago, and it was Heidi with a potato kugel, we both had a good laugh. She said that since she already got the credit, she had to produce the kugel. Thanks Heidi! Akiva baked a beautiful chocolate cake but, it stuck to the pan (my fault) and we ran out of frosting, so it’s a little funny looking, but I’m sure it will be delish.
Mom took the kids bowling while Clare and I finished up and then they picked me up and we went to Carvel. Well, it was so much fun knowing that I could have as much as I wanted!!! I took a chocolate vanilla twist in a cone with chocolate sprinkles and loved it to the last bite. I love that last bit of wafer cone saturated with melted ice cream but I wasn’t quite satisfied yet so I had a kiddie cone chaser with chocolate crunch and then I was DONE! Couldn’t eat another bite if I wanted to.
Many many thanks for everyone’s emails and guestbook entries. They light up my days! Please keep them coming. A few people have shared new things they’ve taken on – one friend is starting to use her Hebrew name!! I can’t get over how many holy women are baking segula challas! Thank you for the zechusim!!! And thank you for Rav Kaniefsky’s havdalla wine – we’re having it for Kiddush tonight. Thank you to Chaya Ita for helping Mom out with the kids while Yoni and I played in the city, and to Benny for taking care of our car once again, and to the Captain for the fabu birthday gift (a spa robe and antique embroidered hanky) and to Shaindyshnitz and hubby for the gorgeous roses. Y’all are amazing! Thank you also for all the Israel photographer leads. I have lots to choose from! Boy do I feel so loved!!!!
A special thank you to Rebbetzin Pavlov, who’s emails are always especially inspiring to me. A lot of people wrote to me about their struggles with making every moment count and working on improving their character. Rebbetzin Pavlov gave me permission to share the following excerpts that I thought would be inspiring for all of us:
You live not knowing what the future is, and because of that, you are learning to focus on the moment. Yet, shouldn't we all live like that? Each moment is a gift from Hashem, a gift to use well. None of us should live carefree lives without glimpsing to the future, because we don't know what the future is, and most of all, because each moment matters, no matter how many moments we are given.
Could that be why Hashem created mortality ? To know that our time is limited, and so we should use it all well. Using the sin of Adam as the catalyst to bring mortality in the world, Hashem reminds him to use his moments well, since they all count. Adam had used one moment in a wrong manner, and Hashem put a limit on his minutes to teach him that each one is a precious gift.
I hear your frustration about working on so many midos and feeling the urgency to get it down straight away…It seems that no matter how much time we are given, it is not enough, because the task seems so big. Still, we are human beings and limited, and so we must take it in bite size pieces, no matter how much time we have in this world. It is the only way we can function. Yet, with those bite-size pieces, we get siyatya dishmaya. He helps us reach heights that we could never reach alone. Like when a small child reaches for something out of range, and his parent picks him up and now with his parent's help, it is within range. Hashem expects us to reach high, but He will pick us up to be able to touch the thing with our own hands.
Thank you Rebbetzin for your love and wisdom!
Please don’t stop davening everybody. You know, it’s really really working. I’m feeling so great. I have a big week next week and need all the prayers I can get. Please keep me in your tefilos.
My birthday blessing for everyone is to savor each precious moment and to experience the simcha in everything. I bless us all for a complete rafua, in body and soul, for each of us individually, and for all of us together as one. I bless us all to sing G-d’s song, to shine forth our unique individual light, and together to dance to the music of the moshiach.
