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| Sunday, April 13, 2008 |
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I couldn’t sleep last night. I was too lazy to take any painkillers before bed and I laid too long on one side. I was aching and it was really hard to roll over. Ugh. And I’m lying in bed, sleepless, as usual from the steroids, and I start thinking dark thoughts. Like tumors in the brain thoughts. I wasn’t totally freaked out, just wondering what surprises would lay in store for me if that started to happen. I woke Yoni to get me a Percacet, which I’ve been trying to avoid. I waited a while until it kicked in but I still couldn’t sleep. Maybe I slept about an hour. That’s how it is these days. But the steroids keep me going like the Eveready Bunny. Yeah, I just keep going and going and going…. Anyway, I looked at my Guestbook in the am while the kids were eating their breakfast and I was completely blown away again. I forgot about brain tumors and got right back into life. I had a fantastic day. So, please keep writing to me. Y’all keep me going strong! |
| Friday, April 11, 2008 |
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I just came home from a visit with the Skverer Rebbe. Thank G-d. Another huge hug from Hashem and it couldn't have come at a better time. |
| Wednesday, April 9, 2008 |
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It’s been such a long long time it’s incredible all that transpires in a matter of days. What a whirlwind! I have this little notebook that Yoni bought for me when I was in the ER and I keep it with me all the time now and jot down journaling things. The little notebook is getting full so this might be a long one and it’s all completely out of order, but hey, so is life sometimes! I started radiation therapy on Thursday. It was very intense thinking about that deadly xray beam that would be hitting my body. The technicians were amazing! I psyched myself up like you can’t imagine. By the time I was lying on the table I was Luke Skywalker with my own light saber ready to do battle with the dark side. Hashem (G-d) is my most powerful weapon. The techs promised to pray for me – I asked them to - the whole time – and they did. And I did and I felt the Shechina (G-d’s presence) right there next to me while that deadly beam did it’s work on the storm troopers. I davened for Hashem’s white light to protect the healthy parts and to wipe out the evil ones. It was all of 2 minutes, but probably the best davening I’ve ever had! Anyway, it must have been the radiation, ‘cause in that two minutes I had this intense feeling of floating on the surface of the ocean and it was incredibly peaceful. I’ve felt that now every time! It’s really cool. Today I davened for the radiation to burnout all the chometz (puffed up bread). It’s biur chometz (burning of the bread, getting rid of arrogance, anger, etc.) in Radiation Oncology, that’s for sure! I’m loving everyone and I’m holding nothing back. Every nurse, every technician, every transport person, the lady cleaning the floor. I’m loving them all. When we got the call on Friday afternoon from Sloan Kettering that they had an appointment for us on Monday morning we had to rush from radiation to pick up all of my lab reports, etc. There was a woman alone in an office across the hall. I had to wish her a good weekend. I knew this was our moment. It would never come again. I couldn’t pass it up. I’m so grateful for every little thing anyone does for me. They don’t even have to do anything! I’m just grateful for people to love. Whoever they are. They don’t need a reason. It’s all there is. The rest is shtus.. Shabbos. Let’s talk about Shabbos after that wild week of mine. We came home from the PET CT scan and radiation therapy at 6:15. Lichtsen (candle lighting) was 7:06. My kitchen counters were literally covered with gifts. Challahs, soup, kugels, cholent, cakes, cakes, cakes, I can’t even tell you. Then I see Oriel Tzedek in his friend’s pajamas. Raizy took him home for a playdate after school and sent him home all bathed and ready for Shabbos! The kids were all in their Shabbos robes and everything was ready. My mother was with us, my father, his wife, my step mom and all the kids. We all lit candles and said the brocha together. Then we all davened for a lot of things. Everything was very potent. We washed for challah. The challah was from my dear friend Yaffa. She used to bake my challah for me. Then she got married. Strangely, a number of girls followed in her stead. Helped me make Shabbos, baked my challah and soon became engaged. Hmmmm. While I was in the hospital Yaffa gathered 40 women to bake challah in my zechus. She brought me her kallah challah. This is what I wrote to her afterwards: The challah was indescribable. I had it all together until I took that bite of your beautiful challah and then this huge wave of Shabbos and love and so many things just swept me away and I had myself a great cry. Shabbos was sosososo high! And your challah was my ticket!!!!! That bite, and all the bites being taken from all those other beautiful challahs made a deep deep impression on my heart and my neshama. I can never tell you enough what this means to me. I hope you can just absorb it from between the lines or something. It was very very high bathing in the healing light of Shabbos. We sang our prayers to Shamayim (heaven). We learned. My family grew very close being together. So much was fixed. On Motzei Shabbos (after Sabbath) my very very amazing neighbors Marilyn Kaufman and Sharon Ansbacher met with me, Dina Mensch, Mom and Yoni and we mapped out my life. After 2 hours they had all the logistics of my life in their loving and capable hands. So many people want to help us and support us in so many ways right now and Yoni and I are humbled by the gifts. You can find Dina, Marilyn and Sharon’s contact info (and a few other resources, requests and opportunities) in My Story. Following the amazing aitza (advice) of Stephanie Omens, another angel from Childlife at Hackensack Hospital (the pillowcases Stephanie – by the way, my kids and parents made me a gorgeous pillowcase too – with all of their loving handprints and messages and doodles. I sleep with it every night, same as the kids sleep with the ones I made for them) I talked to my 3 older kids on Sunday morning. One at a time. It was very very good. Akiva listened very earnestly and he let me know every time he needed to take a little break. But he took it all in and he’s working very hard with his feelings. He’s already opening up to me that he’s hurting. That’s a very good start. He wrote a long long poem about it in school today. My dear friend Rina, his teacher, emailed it to me right away. I’m so glad he’s opening, starting the process of talking that will allow him healing over time. I sat with the girls individually. Both of them didn’t want me to talk to them. They knew they didn’t want to hear what I needed to say so I asked them if I could tell them a story. And I did. I told them Stephanie’s story about a garden that is growing beautiful and strong. We talked about the long sweet orange carrots, the crisp green cucumbers, and all the other delicious vegetables that grow so nicely in the garden. Then I asked them what happens when a weed grows in the garden. And we talked about how important it is to pull it out, cause if you don’t pull it out then more weeds grow and soon the carrots and the cucumbers can’t grow up sweet and beautiful. I told them that I have a lot of weeds growing in my body and it’s called cancer. And if it keeps growing then the beautiful other parts of me won’t be able to grow healthy and strong. Then I told them about the strong strong medicines that the doctors are going to give me to try to get the weeds out. I told them that I have to go to the hospital to get the medicine and that they might make some weird and funny things happen to me. I told them I’d probably lose all of my hair (and I promised to get some washable markers, stickers, etc. so we could decorate my head – hey, my girls are all over arts and crafts) and that I might throw up for a while and I’ll probably be very very tired for some time. They didn’t ask, but I also gently put in that sometimes the weeds win. They each took it all in quietly, earnestly, calmly. They’ve been very very sweet and loving with me. They are processing each in their own way and we are all looking over them to make sure they are getting what they need when they need it. I’m so glad I told them the truth and I know they are very grateful for that too. Over time I’m sure they will deeply process all the pieces and I, my family, friends, their teachers and some excellent professionals are all standing by to help them through the rough spots. On a much lighter note, ‘cause everyone keeps asking, I’m not doing macrobiotics as I had planned. I’m famished on these steroids they’ve got me on and the macro just isn’t enough. The doc at Sloan Kettering likes his patients full and healthy. I’m eating really clean (thanks in full to Atara Weisberger and her elite team of incredibly healthy cooking ladies) nothing toxic, plenty of good organic protein, whole grains, greens, etc. I feel much better. I’ll be working with expert diet people to modify my food needs as I go along. We went to Sloan Kettering on Monday. Never thought I’d see that place! Now I’m one of them. Very weird. It took the whole day, but on our way out of the city I started to get a little bit that I AM one of them now. Part of a new community of people that I never ever thought I’d be and it started to feel a little bit normal, not just this enormous stigma that I was afraid to admit to the public. It is what it is. It’s a new life living with this, but there is life living with this and life does go on. Yoni and I were both jumpy going inside, but it was really pretty. Waterfalls and flowers and beautiful blonde wood, etc. I appreciated the benches in the elevators but we had a good laugh ‘cause whenever we were waiting for the elevator to come and the door to open I had to hobble to try to catch it before the doors closed again. I was never fast enough so we had to figure out a complicated maneuver to man those doors so we could catch a ride downstairs. My body hurts. It was a nes really that I even got the appointment. And before chemo treatment started! G-d is so good! The docs there are really experts in the details of the disease and they are finalizing their decision re: meds by Monday when we go back for a follow up consultation. They also have a whole alternative medicine wing for diet, relaxation, acupuncture, etc. So, no chemo this week. You can imagine my relief! I’m just happy for my kids. They need a break too. Once we got to Sloan Kettering we learned that they don’t So I got right on the phone with my angel of aJtake my insurance. broker and he put the wheels in motion to get me a new policy by next week. Looks good. Please daven that there are no glitches there. More nissim (miracles). But the most amazing nes so far is that the night before the Sloan Kettering appointment a very dear friend called me to tell me she had a mother bird sitting on some eggs and she was saving the mitzvah for me to send away the mother bird. The Torah says that this is one of two mitzvos for long life in this world and the world to come. The other is kibud av v’eim (respect of mother and father). Well, after this week my kibud av v’eim is in another world altogether! We’re all changed. Rabbi Rowner met us there and I did the mitzvah and it was amazing. Maybe it was the ibuprofen I’d taken about an hour earlier, but all of a sudden the obnoxious pain going down my leg and in my back seemed to ease up. Everyone wants to know how it all started so I’ll tell you. But it ain’t no picnic. I thought I injured myself in a workout about 7 months ago and my back hurt whenever I moved in a certain position, so I didn’t move in that position, duh, but after time I was bothered that it was limiting my mobility. So I got with a chiropractor and went for 3x weekly treatments, even with electric stim, etc. but it started moving to my lower back. By Purim it was hard to stand and walk (granted, I was on my feet for hours on end cooking and baking) and nothing made it better. I had intense sciatic pain shooting across my tush and down my leg all the way to my foot right after Purim. Then I started acupuncture 3 x weekly. It wasn’t getting better. Then last Sunday night I realized that I was limping a little on my left side. The next morning I thought that my left leg was week and I couldn’t bend my toes normally. We went directly to the ER afraid that I had a pinched nerve that could have left me paralysed (according to my quick internet research). My left leg was colder than my right. We saw a physician’s assistant in the ER. He recommended an MRI but didn’t push too hard. I had to grill him a bit till he admitted that he thought I should just stay and have it done then and there. Well, then and there was 9 hours later. It was quite a wait in this little shred of a space in the back of the ER. Everyone around me was much more interesting and I spent most of the day evesdropping. An old guy was brought in to the slip next door. I felt awful for him. His wife called the ambulance but the old guy didn’t know why he was there and the wife kept disappearing. Every nurse, every doctor tried to figure out what he was there for. He had no idea. They’d say, do you have pain? Oh yeah, head ta toe, head ta toe. Can you walk? Nah, I haven’t walked in years. Any broken bones? Every bone in my body’s been broken. I used to be an athlete. It went on and on over and over. Do you vomit? No, but the wife didn’t agree when she was there, so he was confused how to answer when the question came up again and again after she went off to wherever she kept going off to. Do you have diarrhea? What’s the clinical definition of diarrhea?, he says. And I’m thinking, Who in this world doesn’t know what diarrhea is? Then the wife comes back and she’s telling the nurse to make sure to change his diaper before they take him to x-ray. After about an hour of her coming and going and docs and nurses trying to figure out why he’s there, I hear two nurses coming in to take care of the diaper. And I hear all this ripping and pulling and more tearing and ripping and the nurse says “you have 4 diapers on! Did you know you have 4 diapers on?” of course he didn’t. He didn’t know anything. But the tearing kept on and then she exclaimed “5 diapers! She put you in 5 diapers! That’s really bad for your skin!” but he didn’t care. He told everyone he could care less if he lived or died. But I heard the great crash of spent diapers hit the garbage can before they tidied him up and brought him up to xray. I felt sorry for him. And I felt sorry for the lady who was in a car accident until all of her CAT scans came back normal and they let her go with some aspirin. And I felt sorry for all of them. Then I went for my MRI. When the test was done they told me I had to do it again with contrast to get a more detailed picture. I wasn’t too alarmed, but it was no picnic laying still for 25 minutes. (Little did I know that with contrast would mean 2.5 hours in the tube) When I came back to the ER a physician’s assistant came in and out quickly. Mum was her word. A while later my regular doctor came in. Her face said everything. She’s my neighbor and my friend and she couldn’t speak. I had to drag it out of her. All she could muster was “It’s bad, Very very bad.” I’ll never forget her face, those word, in that little forgotten port in the back of the ER. It was horrible. I was cold. Numb. She told us there was no need for another MRI. The radiologist had no doubt. I had 2 horrible things growing on my spine and it was eating my bone. Then she laid on some more. Cancer never starts in the spine. It must have started somewhere else. They prepped me for CAT scans to see where else it was eating me alive. Complete scans of my entire body, including details of my brain. I started to shake. I was so cold. And the kvetching from the berths all around me was so surreal. I need a private place to have some feeling. I had no feeling. I asked for something to calm me down. They were happy to oblige. I asked for Rabbi Rindenow. It was very very late. I had the CAT scans and I dreaded the results. After the scans R. Rindenow was there and I let some of the feelings eke out. He was my first comfort. I knew what I needed to do and I told him. Cheshbon haNefesh (accouting of the soul). I didn’t wait for him. It was well under way by the time they found me a room. Another nes (miracle). There were no rooms. They were going to put me in this windowless room in the ER overnight. I needed a good space to just be. R. Rindenow stayed for a long time. They brought me to the room. It was warm and safe and beautiful and I was so grateful to be there. I couldn’t sleep. No results till the am. Sudden horrible thoughts ripped through me every time I drifted off someplace safe. I pushed them away as fast as I could. I can’t even remember the next day. Results were not good. 2 tumors in my lung and something in my liver. And that wasn’t the end of the story. A whole day of scans – ultrasounds, bone scan, the long MRI and more. Meeting an oncologist is a very sobering experience. I ate nothing. I couldn’t sleep. Then the biopsy. I already wrote about that. It speaks for itself. But that was also the turning point. Dr. G. lifted me out of that deep hell and gave me hope. I discovered some incredible inner power and deep wisdom that I knew would pull me through and I’ve been soaring on that driving force ever since. After that I cried a lot, but I knew that the tears were all tears of gratitude. Every email, every phone call, every chesed, every ounce of love and support showering down on me bowled me over and the tears flowed but they were so healing, so nurturing. I was immersed in a bath of deep appreciation from that point forward. So that was the beginning. In case you were wondering. I needed to tell it. And now, just a few days later, I’m not that same person anymore and it seems like a lifetime ago. I got that I’ve been chosen for this mission because G-d loves me so much and He believes in me. And somewhere after the beginning I accepted the mission. Fully. And now here I am grateful for the mission. I don’t want anyone else’s life. Not the girl at the desk in the ER who eats donuts and coke for dinner and goes home to her television, not the old man lying alone in the hall of the ER, who is too ill and too bitter to enjoy any of the fruits of his long life. I’m not jealous of the rich dude in the SUV next to us heading into the Lincoln Tunnel. No. I wouldn’t trade places with any of them. I wouldn’t give up the love, the gratitude, the closeness to G-d for anything. I started to think that these mutant cells are Hashem’s angels. They can only do what they were put here to do. They’re dumb that way angels and vulnerable, cause we can zap em from the sides where they can’t see us coming. I feel sorry for them a little and I know I can talk to them. Maybe they’ll listen to me. I can be pretty convincing. You know, like, you guys better skedaddle ‘cause you’re about to get nuked! Run for your life!!!!!!! A rav in Monsey that we’re close to was our shaliach (agent) to a mekubal (Kabbalist) in EY (Israel). He worked on my ayin haras (evil eyes people put on me). Yeah, the pouring of the lead. Don’t laugh! He said it was good. He saw some specific things with people in my life and was able to remove about 40%. The rav said that was a very good sign, that he was able to remove some. I’ve been cleaning up so many things with so many people that I cast far away. People aren’t bad. Nobody ever wanted to hurt me. I don’t have to hold it. It doesn’t matter. Makes no difference to hold, it just hurts, kills to hold onto it. So I let it go. All the anger, the resentment. My heart is opening, warming, growing. I am cleaning out my heart. There is no tolerance for resentment anymore. It is forbidden fruit to me. It is impossible to tell you all the tefilos (prayers), the learning, the mitzvos, the chesed that is happening in the world since 1 week. It is truly not possible to even know. I feel a oneness in the klal (the Jewish people) that I never ever thought possible. People everywhere are being called to act. The gates of shamayim (heaven) must be trembling against the ruckus from below. I am beginning to understand the oneness of Am Yisrael (the nation of Israel). I am one cell in the great body of our people. My plight is our collective plight. Echad (Oneness) is emerging and something very very big is happening between Above and below. Maybe this cancer in my cells are angels for all of us who are connected at this moment. Let’s make the most of it! We can break so many klippos (barriers to G-d)! We read the Igeres ha Ramban (a letter from a great Torah sage to his son) on Shabbos. I used to hate it. I could never come close to even one teaching in it. Now I love it and I want to cling to it. Anger destroys flesh. Yes. It does. I can barely daven anymore. I used to fly through my brochos (daily blessings), too hungry for breakfast to concentrate on anything. Now I can’t get through one brocha. Every word is deeply profoundly awesome. I do the best I can. I don’t want the test to go away so fast. I’m not done cleaning for Pesach, burning my chometz. I want to be completely clean. Whatever comes, whatever pain or misery, will bring me deeper to myself. I’m welcoming it. Another biopsy, scrubbing bubbles. Chemotherapy, elixir or life. I desperately hope I can hold onto this. I am not afraid of dying. At least not today. I don’t feel motivated by my attachment to the physical world. Maybe I’m callous. I’m a cleaning fool. So desiring to see myself the way Hashem sees me. I want to meet that me. Whatever this is supposed to bring me to, I want to get there. I hope I don’t run out of time. Your closeness to me now lifts me higher and higher. Please don’t stop lifting me! I can’t do this without all of you. Daven like mad! Hashem is counting every word. Pick a mitzvah – break one of your klippos! Show someone that you love them. Before it’s too late. Anyone. Why not everyone! Okay, sweet dreams everyone! Love you all! PS - School is on for next year and we need 2 more kids 3-4 years old. Sara Ringer and my mom will be teaching in the morning, and Raizy Goldsmith will join Sara 2 afternoons per week. Couldn't ask for a better team than that, right? Please email me for details. This is a big one. |
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