I have some very difficult news to share. The diagnosis for my back is not good, and the problem is not just in my back. It is also in my lung and my liver. The diagnostics are not complete. There could be more. I am in Hackensack Hospital awaiting further tests to determine the best course of treatment. I need your prayers (Simcha Esther bas Chaya Pesha), your help and your moral support. It is going to be a difficult fight, but as you know, I am a very good fighter. I am awaiting guidance from our rav as to what to share with my children, so please be discreet and upbeat if/when you see them.
I am going through a lot, and I swing frequently from grief to laughter. My thoughts are a whir, as you can imagine.
I am psyching myself for the battle ahead and I need to know that my friends are with me on that. Our need for help is also very real. My mother can be reached on her cell phone at 973-723-9072. She is helping to coordinate making sure my family’s needs are met while I’m in the hospital. Obviously this is very difficult for her, but she has been an amazing trooper.
I expect to be home later in the week, but I have no idea right now what the rest of the week will bring, and what condition I’ll be in.
I know that this is devastating for you but I don’t think I can handle everyone’s complete grief right now. What I really need is for you to cheer for me and help me stay positive. I’m sure we will share many tears together and hopefully much joy in the days to come.
I love you, Shari
Thursday, April 3, 2008
To My Dearest Family and Friends,
Thank you so much for your awesome and FUNNY! Words of chizuk (support). They really helped me process reality in a deep way. I’m saving them in a book of love and affirmations to help me through. I hope you understand my reluctance to speak on the phone. Besides the fact that the phone would be ringing off the hook, I have so much to process on my own, and I can’t give all of you what you need right now for your own processing. Your e-mails are all just perfect! They’re helping me gently process this painful story and they are inspiring me through the scary stuff. I love all the links and inspiring photographs I’ve gotten – Comedy Cures, CaringBridge, beautiful Torahs, flying angels and so much more! I hardly have time to look at the them all (but I will – so don’t stop them from coming!!!) Thank you for all of your offers of help. It is greatly needed and tremendously appreciated. Mostly, thank you for being such great cheerleaders for my task ahead, and for constantly reminding me of who I am – for that is who I need to continue to be.
After the first 2 days of total psycho hell, I had a very good night last night. I had a bone biopsy, awake, which was extremely stressful, but I must say, they have very good drugs here and they dispense them rather freely. A junkie’s heaven! I met with my new radiation oncologist – the one and only Chaim Gejerman (I had to have the original radiation oncologist fired for failure to smile) and Chaim welcomed me at the biopsy with a huge smile and said just matter-of-factly “we’re going to get you through this”. And I believed him. We met with him afterwards and he was confident, positive, upbeat, matter of fact about the treatment and the likeliness of success. Overall I have a team of docs that are brilliant, funny, positive, and upbeat. We're actually starting to have fun, which I’ve noticed is a bit baffling for the more morose staffers here. But they laugh along with me when they realize they have permission. I just had a very interesting meeting with one of my regular doctors. I talked to him about all the long faces cause his was kind of long when he came to see me. He said how sad he was when he saw the first lab report. So we talked a while, well I talked mostly, and he laughed, about how some doctors, a very small percentage, seem to have the gift of giving bad news in an empowering way. I said I think it should be required training for all doctors, maybe hospitals could make it requisite for employment. He said, no, the medical schools need to do it. Then he said, but there always those that will never get it. So I said, with you you do behavior therapy, if it looks like a smile, it is a smile. But we all know that’s not true. He was really chuckling from the whole thing cause he really expected me to be a mess. So he asks Yoni, what does your wife do? And Yoni says, she’s a theater director. And then he went out of the room, knocked on the door, and came sailing in, arms open wide, big grin on his face and he says “Hello! I have terrible news!” We all had a great laugh. I think he’ll have a great day today. And I hope that it’s freeing for all of them who I get to while I’m here. One nurse started visiting us at the beginning of her shift, just to say hi, even when she’s stationed on the other side of the floor. I’m having a hoot. I hope this good humor lasts a long while. It could be the steroids they’re pumping me with. OH! This morning Rosy Joseph came in to see me and I was all dressed sitting on a chair typing this to you and Yoni is on the bed all stretched out. When Rosie came in of course she remarked on the bearded patient. Yoni said “well, it must all the steroids you’re giving me.”
My Dad and Fran are here. They are great to be with and the kids were so surprised and happy to see them when they woke up today. My brother is also here. He’s great. I start radiation treatment tonight, and chemotherapy on Monday. I have one more (3 hour) MRI which I told them they'll only get from me if they put me out completely. When they put me in head first for my first MRI I literally panicked. I turned all red and hot and my heart took off like I was running a marathon. So, they turned me around and put me in feet first. The top of my head was very near the out of the tube for that scan and if I rolled my eyes back it was like I was totally out. This MRI is more complicated, besides being so long. They have to put me all the way in so my head is in the middle of the tube. I laughed and refused to do it awake. The techs and I sat around drinking juice and coffee and talking about it for a while, eventually I won. They’ll see me later with an anesthesiologist and I’ll have a lovely 3 hour nap while they do their thing. I’m also having a complete bone scan and Pet scan later today. Never a dull moment. So many new experiences. Well, it seems I lost 3.5 pounds on the stress diet. Couldn’t eat for 2 days, but now I’m getting starved and they have yummy Kozy Shack pudding here, so oh well, I guess there goes that small weight loss win. You should see the treif menu here! It’s like dining at Tavern on the Green! Me, I had a rubbery omelette and pancakes that looked like Just the plastic ones we have in my girls’ Little Tikes kitchen.
Rabbi Rindenow has been visiting regularly since the beginning. He is so warm, compassionate and funny. He really helped me through the terrible shock of that first day. He is a big bracha (blessing) in our life. I met with a WONDERFUL woman who works with children of parents with cancer. She was so really so beautiful, inspiring, deep and helpful. She brought me 4 pillowcases and a box of fabric markers so I can trace my hand and write a bedtime message for each of my children. My mother will put their pillows inside and they can sleep tonight with a little bit of mommy. She had the perfect advice for talking with them about everything. We will be telling them the truth in such a beautiful way. My family can only grow together from this profound experience. This wonderful angel of a woman will stay by my side as long as I need her. I also spoke with a woman in my community who survived a case far worse than mine and she’s GREAT. She and I will be speaking on a regular basis.
Please don’t stop the prayers! They are already working and we have only just begun climbing this challenging mountain together. Please pray mightily that the upcoming tests do not reveal anymore bad news and that the doctors are able to find the right elixir to obliterate the enemy immediately and forever.
Many people have offered to cook meals for us for the next days and for Pesach (though Dr. Gejerman would like to promise that I’ll be making my own Pesach meals). Thank you so much! It takes so much stress off of me, Yoni and my Mom, and allows us focus our limited resources on the kids. (who all seem to be doing well!) I’m coming home tomorrow, barring any unforeseen circumstances, and am happy to be spending Shabbos (Sabbath) with my family.
I will keep in touch regularly, as I’m sure you are all concerned about what’s happening and how I’m faring. Feel free to spread the word. I’ll take all the prayers I can get!!
And please, have a laugh, a really good one. We all need that too.
With much love and deep gratitude!!!!
Shari
Friday, April 4, 2008
This is all old news already, so more to come later. Y’all will be happy to know I’m home sweet home and very comfy. I write and write and there’s always so much more and then there’s the unbelievable torrent of incoming email that it’s like a full time job replying to. I’ll do my best, but please don’t be upset if I don’t get back to you.
This from my very good friend in Israel:
When T was little and we found out she was to have surgery it was all a bit 'unreal' yet very real. Tzipora Weinberg once said something to me and it really helped me, I would like to share it with you. It is simple but profound. She told me that everytime I had a negative thought about T’s upcoming surgery - what would happen to her, to us, she said go with that thought, don't push it away but as soon as I was through with that thought, have a positive one - think about after the surgery and something nice, fun that we would do.... It was very freeing advice, took away the guilt and the despair a bit and the thoughts never got the better of me.
Another thing I once heard was from Rabbi Karlinsky. We had a dear friend who got sick and we were having prayer vigils for him. Rabbi Karlinsky said that the word Nesayon (tes) has the one Nes in it. Nes as in Banner. When someone is sick, he/she most assuredly is in the midst of a nesayon but that nesayon is a banner for the community. It rings out to all of us to wake up, to doven (to pray), to become better, stronger, to give more, to share more.
I loved this advice and chizzuk, don’t you?
So here’s the latest on me:
Hi everyone that I love so much!
Thank you for all the email – it’s like the best morning medicine! We have it linked to Yoni’s blackberry so he’s been reading your beautiful messages to me as soon as they come in. I got quite a few while having my bone scan last night. It was truly amazing. Lots of tears. ALL of them tears of gratitude for such truly awesome people carrying me on your wide wide wings of love and support.. I’m truly flying with you!
Okay, now it’s true that I’m pretty pumped with steroids, which I’ve learned can be a real upper, but come on, we all know that I’m made from some pretty sturdy stuff. BH”!!!!
After my delightful 3 hour nap in the MRI (from which I was quite rudely awakened much to my chagrin!) the lab results are all in (except for the PET scan I’m having tomorrow which will only give more details of what we already know, and will serve as a baseline to measure the success of the treatments. It looks good. There are 2 tumors in my lung, where it definitely started, and 2 on my spine plus something very small at the base of my spine. The thing in my liver is definitely a harmless cyst and there is another very small thing in my liver that they are very sure is also a cyst (the PET scan will confirm). The doctors are very positive about the news and on board with good treatment.
I start radiation therapy tonight, which is painless. Dr. Gejerman, a.k.a. “My Favorite Doctor in the World” is giving me an anti-nausea drug to take before and after, but he doesn’t think I’ll really need it. I’ll be starting chemotherapy next week, with a 3 day course (Tue/Wed/Thu) then a break for 18 days. I haven’t spoken at length with Dr. Alter, my medical oncologist (I’m so lucky right? I have all these very professional guys on my team!) about the details. But the chemo courses will probably go on for a bunch of months. We’ll see what the doc thinks. I already have a scrip for an anti-nausea med for that too.
A dear friend of ours, who is herself a doctor and holistic madwoman, put us in touch with her nice who is in treatment for Hodgkins. I had a long talk with her last night about this great doc in NY who has developed some amazing stuff (including cutting edge low dose chemotherapy injected with insulin which takes the med right to the heart of the enemy and blasts it to smithereens, leaving the good stuff pretty much unharmed. He also has great stuff to boost the body’s natural healing systems during regular chemotherapy. I’m very very interested in that route, at least for now. His patients say they experience very few side effects as a result, and they’re traditional treatment is far more successful. I already have an appt to meet him, but not till May 14. They promised to call me if they have any cancellation in the meantime. My very wonderful docs both said they’d be happy for me to do anything alternative so long as it doesn’t jeopardize the good effects of their treatment plan. I’d say we’re in a very good place together no that.
This wonderful girl also told me about this great product “Penguin Caps” that’s a hat made of ice packs that freezes your hair follicles during chemotherapy and prevents hair loss. Won’t that be pretty? Probably makes a great cooler for carrying lunch! She’s getting me some. Also she said that with a healthy liver (which mine is BH”, there tends to be less hair loss. Daven for that, though luckily I do have a great sheitl (wig) I guess its time for that second backup one – lucky me! Should I get long? Short? What do you all think?
Besides all of the above, we’ll also be bringing all of my studies and labwork to a top doc at Sloan Kettering. (Dr. G. is putting it all together for me and he’s trying to get me that appointment with a VIP doc over there on Monday or Tuesday which will help make final decision re: chemo meds). My docs said if they recommend something I like better, they could do their treatment here if I want, which certainly made me happy.
I’m scared about the chemotherapy but Nancy Siegel is excited to come with me to my first session and do guided imagery. She’s also bringing her clarinet and yoni’s bringing his guitar AND his trumpet, so I’d say we might just all have a big hoot!
Dr. G. said a lot of people in treatment do macrobiotics and it’s great. Anyone want to be my macrobiotics coach? ‘course I’d love a cook to go with the coaching, but I’ll take whatever I can get.
There’s really so much to say. I’ve been having so many incredible insights today. I guess that’s what happens when G-d puts an hourglass in your face. It’s like Shlomo Hamelech (King Solomon) said, live every day like it’s your last. Makes your days take on some very profound dimensions. I noticed right away after hearing the shocking news that I was looking at people differently. As they wheeled me on through the ER to I don’t know which test I looked at the people in the ER. I was jealous of the young girl working behind a computer, of the old man in obvious agony waiting for a private place to suffer. He lived a long life and I was jealous of that life, but then I wondered if he lived a rich life. Probably not. It’s not what we do on a usual basis.
I started getting really related to all the wonderful people here who’s job it is to care for my needs. I found that I wanted them to really know how grateful I am for even the smallest chesed. I’ve been laughing and talking with all the nurses,
You know, for a few weeks now, since Purim for sure, I’ve been really looking at the tikkunim (fixings) I need/want to make. I’ve always struggled with my ability to receive love (big surprise) my ability express gratitude (which is obviously directly to my relationship with Hashem) and my negative attitude (among what seems like so many other things).
Well, here I am, with a timer ticking like that scary hourglass in the Wizrd of Oz, and all of a sudden I’m looking at these sad cases in the ER and I’m saying to myself “these are G-d’s beautiful creations! And these beautiful nurses who always smile and even give me a hug when I’m sad and want to do everything they possibly can for me, and then the technicians that hold my hand through all the tests and then docs that smile, and reassure and tell dumb jokes, and talk to me straight, and then Yoni who tells me he loves me, loves me, loves me and is taking care of my every wish, and then all of you who are just so incredibly amazing and supporting and forthcoming with love and help and positive energy and affirmation and ohmygosh, it’s just so much gratitude.
Well, y’all get the picture. I’m up against the wall and I’m thrilled that so far so good in the middos (character) development department. I’ll keep ya posted as we go along.
Holly Pavlov just happened to be in Teaneck today, with nothing on her agenda, IMAGINE THAT! She came by at the most perfect time and we talked for a long time. It was so so good.
Seems chemo starts Wed, then Thurs and Fri. It’s an 8 hour day, followed by radiation treatment. (At least they have some private chemotherapy rooms and we’ll be there early, so we can practice our music as loud as we want. I’ll finish that afghan by the end of this that’s sure. Maybe I’ll write some of my books. Wouldn’t that be grand? The radiation is 15 treatments, no weekends, starting today and they are very short sessions with no wait.. So, ugh for the long hard G-dknowswhat’llbeflying days, but then I have 18 days no chemo and the doc says I should feel good then. Daven for that and that the anti-nausea drugs work for me and that there are no evil side effects – we wouldn’t that now - will ya? J
No to end on a bummer note, I’m going home tonight. So psyched to see the kids! They’re the best medicine
Thank you for your continuing good jokes, notes, beautiful stories, photographs, INTERESTING AND WONDERFUL individualized and other just obviously needed offers of help. I’ll be resting up over Shabbos for the next week. PLEASE KEEP IN TOUCH WITH ME !!! I don’t know what I’ll need next week, maybe company, maybe accompaniment (musical and bodily) I don’t know what. Please stay posted and don’t ever stop davening – for healing, for ease, for my personal growth, for the big tikkun, for everything you know.
And if you can, think about taking on a mitzvah in my zechus. Many of you already have. I’m working on ahavas Yisrael (love for my fellow Jew), chesed (lovingkindness), gratitude, you know. And my own davening. Here we are saying our goodbyes to the hospital team. And we told them that they shouldn’t take this lightly. The way they’ve been contributed so much to the quality of my life when so much is at stake, and quite likely will have contributed to saving my life. You hear that up there Big Guy?
I love you all sosososososososo much and I need you all now. Thank you being my team!!!!!!!
