Whew! I feel like I just crawled out from under a rock. Not kidding. Chemo is hell. There is no doubt about it. Dad and Fran arrived on Friday, chol hamoed, and the fun began. I was in quite a stupor, sleeping days on end, and waking up just long enough to get really nauseous. I’ve been having pretty nasty pain in a few spots on my ribs. Scary pain. Then the headache started, a full front of my head constant pain that went on for about 8 days. It just let up last night when the rain started. And the nausea subsided with it. I can’t really believe how much better I feel today. It doesn’t seem possible. I’m taking it really slow. Just in case.
Somewhere in the shadows of the past week I do recall getting together with Mom, Dad, Fran, my brothers (David and Michael) and the kids. We went to Van Saun Park. That’s about all I could handle for chol ha moed outings. And then it was back to bed for me. But we all had a nice ride on the choo choo train (yes, we got it on film) and the merry go round. It was really great being together. A rare treat. That night Yoni, Michael, Dad and I took the kids over to the Rothenberg’s for the great music and get together. Michael is a fabulous drummer and he and Yoni were terrific together on the hand drums. Yup, got it on film. I pretty much slept a lot after that too.
By last days Sukkos I was pretty miserable. I felt like I fell down a very deep hole and was just spiraling deeper and deeper downward. I kept looking for the simcha, but there wasn’t any for me. I lost 5 pounds in 2 days. Food was the enemy.
The morning after the chag, we took the kids to see Stephanie from Childlife at Hackensack Hospital. We all drew pictures together of Mommy’s garden. There are so many weeds in my garden. Then we took the kids out for lunch at Shelley’s in Teaneck and I almost passed out on the bathroom floor. They turned on the air conditioning for me and I ate some fruit (everything else was DISGUSTING) and I felt a bit better. The ride home was pretty awful again and I crawled into my bed as fast as I could. Horizontal felt very very good. Dr. Krug said he wanted me to come in to get my blood checked. He was afraid my hemoglobin was low and I needed a blood transfusion (which I hear is quite the experience, but leaves one feeling very refreshed afterwards). So, Yoni and I got back in the car and I basically rode into the city with my head in my lap.
The emergency room at Sloan Kettering was a serious educational experience. They really have their act together and I barely had to wait, but I saw faces of cancer that were pretty sad. I was by far the healthiest one there. Turned out I was quite dehydrated but my bloods were fine. So they shot me up with half a gallon of fluid and I perked right up. Ella came to visit and it was just like old times shlepping my IV pole together every time I had to visit the bathroom. Just before I left they started me on an iv dose of compazine, an anti-nausea med, but all of a sudden I felt like I was going to kill someone and tear out of there screaming. The nurse said it was a normal adverse reaction and she stopped the drip, thank G-d! I AM SO SICK OF ALL THESE DRUGS!!!!
R. Goldhar called just before Shabbos. When I told him where I was holding, he suggested that I work on separating my body from my mind/neshama. It made sense. My mind and soul are completely intact and healthy. He also told me that the Shechina, G-d’s presence on earth, rests on the bed of a sick person. So, he said, I don’t need to look any farther than my feet to find Hashem. He’s right here beside me. That was deeply comforting. I’ve been feeling so lost.
Shabbos was rough nonetheless. The headache wouldn’t let up at all and I was throwing up. Mom and Yoni forced me to drink every time I opened my eyes. They were very annoying. But by the end of the day I think my body had had enough. Atara visited (always a delicious treat!) and then Yocheved sat with me in the dark until Shabbos was over and we had a good heart to heart about life, death, suffering, serving Hashem. I fell asleep with Akiva and Batsheva and when I woke up the headache was gone. Yoni opened the windows in the bedroom and the rain sounded so good, so cleansing.
The Goldhars came back after all the kids were in bed and we sat and learned chassidus together and ate cheesecake and French fries until midnight. It was wonderful and I felt life flooding back into me. When I woke up today I felt almost normal. Except for the bone pain. Please daven. This cancer has got quite a life of it’s own here.
I’ll be seeing Dr. Gatto tomorrow. Boy does he have his work cut out for him! I need to start getting psyched already for the next round of chemo on November 5. Can’t imagine how I’ll do it again, but what choice do I have? I hope Dr. Krug can do something to help me through.
Tsvika and I start editing the trailer tomorrow. Can’t wait. It’ll be great to get lost in the creative process.
Hope to see lots of you at the concert on Sunday. If you haven’t gotten your tickets yet you can reserve with me at sg@thejea.org and pick them up at the door between 1:45 and 2:15. Don’t wait to reserve your tickets - ‘cause it really may be a sold out show!
Thank you so much to everyone who visited me over the last 10 days. I’m glad it wasn’t a crowd of people, I couldn’t have handled that, but the few that did come really brought so much light into my week. And thank you so much to Raquel and Talya for coordinating the most beautiful, healthy and delicious meals! As Shabbos neared I sat on my couch having one of those good gratitude cries and I knew that Hashem was hugging me as the food, the challah, the flowers and the love flooded in.
Thank you to the fabulous cooks and bakers (I hope I don’t forget anyone, please forgive me if I do!): Leigh, Talya, Liana, Shoshana, Sharon, Lara, Yocheved, Debbie, Nechama Blima, Aliza, Shoshana, Yaffa, Sara and Amy. Thank you also for the flowers, the cards and the bounty of brochos.
So, not to worry. I’m climbing out of the deep dark hole and looking forward to clear skies and much fun ahead.
With much love, Simcha Esther
Sunday, October 19, 2008
Corrections/Additions:
Um, duh, I forgot to mention that Ophelia is a fabulous multitasker, able to take blood pressure and temperature all at the same time. I hope she and Ralph are getting along well without us. We'll check in on them again on Nov 5, next chemo day.
Thank you to Leigh, Raizy and Talya for the most amazing Yom Tov meals! And to several other wonderful friends and neighbors who dropped off flowers, more flowers, potato kugel, cake and more!
A number of out of town friends have been writing to me for concert info. I have a beautiful flyer I can email to anyone who wants. Please just shoot me a note at sg@thejea.org. The flyer has all the ticket and pricing info. And you can reserve through me. Once I receive payment (tax deductible check) I'll hold your tix for pick up at the door on the day of the concert.
We need a few volunteers to help before and/or at the concert. If anyone is interested/available please let me know asap. There are some fun things that need to get done, but I'm not as energetic as I usually am. Thank you so much.
Have a good moed!
Love, SE
Friday, October 17, 2008
To My Dearest Friends,
I had a great power session with Dr. Gatto at 8am on Monday morning to get me ready to receive the healing liquid on Thursday. He’s so great. I’m blessed to have him on my team of healing angels. When I got home I cooked up a storm for Yom Tov, but really wiped myself out. I think I overdid it a bit. Everything was hurting. Thank you for the flowers, the flowers and the flowers! And for the autumn potpourri (Oriel named one of the little pumpkins Fred).
Yom Tov was beautiful. Lots of good friends and too much great food. Luckily everyone was very hungry. I love the long days of Yom Tov, everyone hanging in the sukkah till late in the day. Thank you to all of our wonderful visitors!
The party in our sukkah Wednesday night was gorgeous – and the best possible way to prepare for Thursday’s chemo adventure. The sukkah was glowing with all of our tiny white lights and saffron sheets swathed with purple swags, and the tables outside, festooned with candles and treats were stunning – many thanks to my very helpful children who set everything up a la Mommy. Many thanks to Gili Houpt for his sweet music and beautiful stories, to Rabbi Goldhar for his deep Torah insights and to Yisrael Feuerman, who made a siyum on 35 blatt of gemara that he learned by heart in my zechus. R. Goldhar tested him well and Yisrael was spot on as they say in some parts. Sitting inside the hug of the sukkah with so many dear friends was just the shot of love and kedushah that I needed to get psyched for the big drugs. I just wrapped myself in that hug, added the rest of you all to that huddle, and took it right along with me to Sloan Kettering the next day.
Yoni and Tsvika and I were on our way into the city at 6:15am on Thursday morning. It was still dark out when we left. When we got there Dr. Krug’s secretary came to inform me that he wanted an MRI of my brain before I see him in three weeks. Well that was sort of sobering news, but she asked and he agreed that I could do an open MRI at the imaging center of my choice. This morning I looked at the scrip and saw that it’s pretty much standard operating procedure for all patients taking Evastin, and when he said I could go to any lab I knew he wasn’t’ concerned. He ALWAYS tells me to come to Sloan when he needs the best radiologists to read the scans.
Chemo was fabulous. Can you believe it? I don’t think I laughed so hard for so many hours in at least a couple of days. (I laugh a lot these days, BH). Ella spent the day with us, and the four of us just kept laughing and laughing. What a bunch of comics we all are. Ralph, my iv pole, gave us all a big hoot beeping away when the nurse came in with Ophelia, the thermometer setup. She was a real cutie (Ophelia, not the nurse) and Tsvika did a good job as the shadchan (and cameraman – he got EVERYTHING on film – no small feat inside Memorial Sloan Kettering with their uppity no camera rules.
I think all of our fun (not to mention the enormous Indian buffet we set up around 12:30 in the middle of the cubicle) made the poor nurse very nervous, but the other patients got a big kick out of us. One woman coming out of the bathroom with her iv pole while I was waiting to go in with Ralph (and Ella – don’t ask, we had to measure every pee in a plastic hat – very bonding for Ella and me). The woman stepped into the hallway and she just looked at me and blurted out “You’re so beautiful! You have the most beautiful eyes! And smile! And dimples!” Well you go girl! I felt great.
The drugs were super. No problems there, but it took 4 sticks to get a good vein going. I MUST drink lots of water before arriving next time or they’ll start talking to me about putting in a chemo port to make their lives easier. NOT INTERESTED! They flushed my kidneys with saline for about an hour, then started the drugs in succession. I said lots of tefilos from Aneni for longevity, health, rafua and a special blessing for taking medical treatment. Two nurses had to go through this very offificial process before hooking up each drug. And they had to wear these HAZMAT gowns to protect themselves from the stuff. Very inspiring. But I was in great spirits and took it all in stride.
When they started the Cisplatin I laid back, put on a great relaxing CD (Raindance by Philip Elcano) and started the meditation that Dr. Gatto gave me to do. As the drug slid down the tubing and dripped into my arm I imagined it filling my body with G-d’s white healing light. It spread quickly up my arm, up through my head and down my other arm before illuminating and cleansing my entire body and shooting out my feet. In five minutes I visualized my body totally healed and glowing with vitality and perfect health.
I lost at Scrabble. I can’t imagine how. Must have been because I was inhaling the weird smells of the new board and plastic bag of game tiles before we started playing. I NEVER lose at Scrabble (well, hardly ever). Before we knew it the last bag of saline was done and it was time to get going. Well, I’m sure glad it was a great experience ‘cause it sure helps me to look forward to next time.
When we left I needed to walk. My legs were all cramped up from sitting around tethered to the tubes for hours on end. We went hunting for a Haagen Dasz and I had a chocolate peanut butter and butter pecan cone cause I was such the champ. They actually consider ice cream a liquid, which I need lots of to keep flushing my kidneys so they don’t fall apart from the drugs.
Many thanks to Bubba, Uncle David and Chaya Ita for making the first day of chol hamoed so great for the kids! They were full of hugs and smiles when I came in and they each had to pull my hair to see if it would fall out. Not yet. G-d willing never.
I slept for a few hours last night and then was up, but I still felt good. I started feeling queasy around 8am and I took my megadose of steroids and an anti-emetic to battle the nausea. I never got really nauseous, but I was starting to feel queasy. Thank G-d it passed quickly. Love those drugs! I keep falling asleep in the middle of things, like davening, writing. Not good. And I definitely lost most of my appetite, as well as 4 pounds since my last weigh in. That’s a lot.
Dad and Fran flew in to spend Shabbos, Sunday and Monday with us. Great timing! The kids are so happy to see Grandma and Grandpa. It’s going to be a beautiful Shabbos. Thank you Leigh and Talya for the great and healthy meals!!!
Please remember to get your concert tickets early. I wouldn’t want my friends and family to get stuck without seats. Please send me an email if you’d like to receive concert information or reserve tix through me. If you can’t get to Passaic you can email me your reservation and mail me a check made out to Bikur Cholim of Passaic/ Clifton. It counts as a tax deductible contribution but I need the reservations and money by the Thursday before the concert. Looking forward to seeing everyone there!!
