20 Questions

I glanced at the clock and realize that I’ve been working in complete silence for the past three hours. I’ve been very productive in that time: editing blog posts, curating Pinterest boards, crafting terms and conditions for a giveaway, adding blog posts to WordPress, emailing employees tasks to do, responding to emails, updating my time on Harvest, sending a meme to a co-worker on Slack, emailing clients with questions, following up with influencers. I’ve done a days worth of work in three hours as I cram in as much as humanly possible before the start of Phase II of treatment please g-d tomorrow.

But last week, I played 20 Questions with Dr. Moshe Gatt at Hadassah University Medical  Center in Ein Kerem. Dr. Gatt is my second opinion doctor, the specialist I went to see hours after my confirmed diagnosis of diffuse large b-cell lymphoma back in December 2017. I like Dr. Gatt a lot, and it’s not because I truly enjoyed this article he penned years ago that I found via Google stalking, but he has a great bedside manner, came highly recommended, and he responds to patients via email and WhatsApp. That’s a huge plus in my book. While I’m still very happy with my care at Shaare Tzedek Medical Center and I 100% trust in my Doctor, I wanted the opportunity to speak with Dr. Gatt before I began Phase II of my treatment plan.

So, I put together a list of questions before our meeting and recruited the help of Gaby’s Aunt Della who joined me at the first meeting so it was very appreciated that she joined me at this meeting. The appointment was at 4:30 p.m. on a Tuesday and Gaby was knee deep in carpool and childcare.

The issue with using Sharap, which is basically where you pay a high fee for access to a specialist without going through your Kupat Cholim or waiting months for your appointment, is that the Doctors usually see people off hours. By the time we got to the -3 floor of the Shareet Institute building, the department was all but deserted except for a number of people scattered through the waiting room. Another plus of going with Della is that she didn’t automatically join the people waiting in the waiting room, she went through the wooden “gate” and towards the doctors offices in search of Dr. Gatt. We were on time for our appointment and wanted to make sure Dr. Gatt wasn’t just siting waiting for us.

We couldn’t find his name on any doors and a number of doors were closed, so we stopped into one of the offices with a physician and an open door and asked the Doctor if she could point us to Dr. Gatt’s office.  “Dr. Nasty,” as I will refer to her since I do not want to use her real name however I do know who she is, told us that she had no idea who Dr. Gatt was and blew us off. Weird, but okay. We considered asking another doctor, who was meeting with patients himself, but a hospital staff member passing us in the hallway was very friendly and pointed to one of the closed doors where a meeting was in progress. We thanked her for confirming his office and sat directly across the hall in a waiting area that’s marked “for employees only (the door was open!).”

Now, I should mention that my RBC’s were really low that day. They were under 10 and normally that could warrant a blood transfusion. But, since I’m thank g-d young and relatively “healthy,” my Doctor just prescribes lots of rest and in the past my body has rebounded. But, when my RBC’s are really low, I’m exhausted, it’s difficult for me to take a deep breath, and I feel like crap. So, I was thankful for the comfortable chairs and the ability to rest before our meeting. But it had already been a long day and I really just wanted to go home, crawl into my bed, and go to sleep.

Twenty minutes go by and I’m starting to get a little agitated. I decide to talk to the people out in the waiting room to make sure there was no one else waiting before us to see Dr. Gatt. You can imagine the people in the waiting room were just as agitated but after confirming that no one else was waiting for Dr. Gatt, I went back to wait with Della. In the office next door, a woman begins to cry and shout at the doctor, and I try to distract myself. I can’t emotionally handle the anguish of someone else’s pain and so Della and I try to talk over this stranger’s grief. By 5:15 p.m., I was pretty much done waiting and decided to knock politely on the door to confirm that Dr. Gatt was even in there in the first place. Five minutes later, the door opens and Dr. Gatt emerges all smiles. I tell him that we are his 4:30 p.m. appointment and he gestures for us to enter his office and then disappears.

There’s a draft in his office but otherwise, nothing else has changed in the four and a half months since our first appointment except for me. Before bone marrow biopsies and six rounds of R-CHOP chemo, night after night of prednisone inflicted night sweats and insomnia, daily Clexane injections and hours of bone pain from neupogen, weekly PICC line cleaning and what used to be a head full of Jewfro hair. During our first appointment, I sat in complete terror as Dr. Gatt explained my disease, my prognosis, and a treatment plan. During our first appointment, I had no idea what the next five months would look like, or what my life would suddenly become.

“I didn’t recognize you at first,” Dr. Gatt said, when he returned to his office.

I don’t recognize myself these days either, I wanted to respond, but held my tongue.

I wondered if he could see the changes beyond the wool cap covering my obvious bald head, or the deep dark circles beneath my eyes and the dry, ashy skin of my face. Time was short and so I launched into my 20 questions and he patiently answered every single one. When it came to Phase II of the treatment plan, Dr. Gatt and Dr. Ashkenazi differed on one specific aspect. Otherwise, they were both aligned and so even though I am not looking forward to spending 4-6 days in the hospital (x2), I accept that high-dose methotextrate is a necessary course of action for my treatment.

Midway through question #9, Dr. Nasty knocks on the door and enters the room unapologetically. She needs his help with what appears to be a specific note regarding a patient’s care and they confer for a good five minutes as Della and I sit in stunned silence. This is the doctor who didn’t even know who Dr. Gatt was and yet, here they were discussing a specific patient’s care. She exits the room as unapologetically as she entered and we return to my 20 questions.

But I can’t stop thinking about how awful she was to us, and how unnecessary it was for her to be so unbelievably rude. She could have said that she was too busy to help us, or she could have helpfully just pointed in the direction of Dr. Gatt’s office. She could have apologized for interrupting our meeting, which cost me a LOT of money that we already were made to wait for almost an hour. She could have just been a decent human being, but she chose none of the above. I’m truly thankful that she is not my physician. I don’t care how talented you are as a doctor, but if you’re a shitty human being, you’re worthless.

As Dr. Gatt typed up a summary of our meeting, Della asked her question. She wanted to know when my hair would grow back. Dr. Gatt answered “two weeks,” and Della pressed him to clarify. Two weeks from the completion of my last round of RCHOP, my hair should start growing back. I resisted the urge to run my hand over the sparse tufts of hair that remained. It doesn’t matter though, I don’t want any of the hair that’s still on my head to remain after treatment is done.

When treatment is finished, and the PICC line has been removed, I’m going to muster up whatever strength I have in me. I’m going to shave whatever little hair is left on my head until my scalp is smooth and then I’m going to finally go to the Mikvah. And when I emerge from those waters, six months of torture will hopefully be behind me forever, and I will truly be reborn.

Tomorrow starts Phase II of treatment, including a new type of chemotherapy drug. Please keep me in your prayers: Lior Shira Batya bat Chaya Yehudit.

Thank you!

 

 

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Fly

My tentative 7 year old daughter is hooked up to a harness at the Dino Park in Ashkelon. There is a crease in her denim skirt where the harness hooks together, and with tentative hands she caresses the ropes on either side. Her shoes and socks are off and with pink toenails, she gently bounces up and down on the trampoline.

“Fly for me,” I SMS to Gaby. “Tell her that I said she should fly for me!”

I’m not far away. I’m on a bed in a room with a view of rows of boats swaying ever so gently in the marina. The sky isn’t a brilliant, clean blue but ombre in color – white haze paints the sky ever so gently. Next to me, workers lift and lower a pulley system on the building they are working to complete. I’ve been hearing their music all day; Arabic words mixing with the Beatles soundtrack my in-laws left on before they went off on a tiyul with Gaby’s sister and her kids.

My numbers are low and so I’m indoors again today. I just took another neupogen shot and I’m waiting for the bone aches to begin. Over Chag, I craved pineapple. At 4:00 a.m., while wide awake from cancer insomnia, I learned that pineapple is full of magnesium which is needed for bone growth. I don’t know if that’s true, I read it on Buzzfeed, but it makes sense that my body is desperate for magnesium.

I have a cough that has kept me up for the past couple of days and my ribs hurt from the neupogen shots and the coughing. Still, my mood is much better than it was Erev Chag, and I’m slowly regaining my energy. Chemo has caused my throat and esophagus to swell so I’ve been eating mango ice pops and trying to drink water. My taste buds are gone so I don’t taste anything at all.

Yesterday, Gaby and I awoke at 6:30 a.m. and got into the car to head back to Jerusalem for the day. We arrived at my weekly appointment at Shaare Tzedek by 8:30 a.m. but the hematology-oncology day clinic was running on a skeletal crew. Dr. Ashkenazi is off on vacation and I wondered what he was eating that morning. Was he sitting with his family on a beach somewhere with a plate of Matza and an array of cheeses? I wonder if he is savoring the taste of food this Chag, if he is enjoying every bite while he relaxes in a world that’s far away from his cancer patients.

Tami, one of my favorite nurses, is working and so I wait for her on one of the chairs outside the nurses station. The unit is very quiet, I recognize only a handful of people. The emptiness is surreal; did cancer take a vacation over Pesach? Perhaps cancer is in Vallarta, Spain or Orlando, at one of the kosher hotels that I’ve been following on Instagram. On vacation cancer is enjoying BBQ dinner with well done french fries and sack lunches of cheese and smoked salmon, individual yogurts and platters of perfectly cut up fruits and vegetables.

I chat with Tami as she prepares to clean my PICC line. We’ve driven almost two hours for this procedure alone, Dr. Ashkenazi doesn’t leave any instructions for a blood count. There is no need, he has instructed me to take four neupogen shots this week. Please g-d, by our meeting next Tuesday, my numbers should be good enough to begin Phase II of treatment.

Tami is sterile and methodical in her PICC line cleaning, she is gentle when it comes to ripping the bandage off of the stitches that holds my PICC line in place. With gloved hands, she cleans the skin with alcohol and waits for it to dry. She places a new bandage over the PICC line to hold it securely in place. There are four syringes lined up like soldiers and I always wonder how they know which ones are the saline and which ones are the heparin. She opens the purple line and flushes it with first saline and then the heparin. She closes the line with a click and moves on to the white line, repeating the procedure. She sterilizes and cleans the blue plugs before telling me that I’m free to go.

I think about those words: “I’m free to go,” and ponder their meaning.

Before bed last night, I tell Gaby about my fantasy. About that moment when P”G Dr. Ashkenazi looks at me and tells me that this nightmare is finally over. I wonder how I will react. Will I scream with joy? Will I slowly absorb his words? When I leave Shaare Tzedek, will there be clouds in the sky? Who will be walking into the building as I am walking out? What will the air smell like?

Gaby laughs at me, at the level of detail and thought that I’ve placed into that moment. I smile wryly at him and shrug, “that is the goal I’m working towards, so I’m invested in that moment,” I explain.

Alone in my room, I follow Passover and Spring break through social media. Through Facebook and Instagram, I’ve watched the duck parade in South Africa, seen gorgeous gowns in Morocco, attended a basketball game in Brooklyn, climbed the snake path of Masada at dawn, splashed through a wadi up North, picked flowers in the South, packed vegetable boxes for the needy at Leket, made a door sign during a woodworking activity, tie-died shirts at Jerusalem’s first station, pushed a double stroller with bundled up children amidst brilliant swathes of white snow at the Bronx zoo, and gone on an Easter egg hunt in Utah.

Alone in my room, I scroll through photos of my children minutes away from me. I watch them cover each other in balls at the ball pit, cower together in fear while giggling as the T-Rex roars, and struggle to stay upright in an inflatable hamster wheel on water. I watch them push against the trampoline with hesitant toes as they struggle with their fear of heights, while knowing they are missing out on such incredible joy and sensation. The feeling of weightlessness, the rise and fall of their hair around their face, the dizzying drop in the stomach as they fall back down.

Alone in my room, I coach each one to push through their fear, to live in the moment, to fly.

 

 

 

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A cry from the depths

It’s 4:00 a.m. and I’ve been awake for an hour in a pool of sweat, my cheeks red and flushed from the prednisone, my bald head dripping sweat onto clean, white sheets. My chest hurts and I’m coughing up mucous, I wonder where I’ve packed my thermometer. I think about Tehillim 130, the psalm I’ve known by heart since elementary school.

“A song of ascents. From the depths I have called You, O Lord.”

I latch on to the word “depths” for I am here, I am in the depths. It is both a place and an emotional state. It is misery, it is suffering, it is pain.

It is trying to bring in Passover two days after a sixth round of R-CHOP. I think back to Nurse Tzipi’s words weeks ago, as she drew my blood and cleaned my PICC line at Shaare Tzedek Medical Center.

“I’m sorry,” she said. “But you’re going to have a hard Passover.”

I was warned and yet, I was hopeful.

I can turn it around, I can do it. I coached myself. The power of positive thinking, right?

From the depths, I clean all the chametz (leavened) food out of the fridge, each movement agony. The chemo has settled into my upper back and thighs, I can no longer crouch to clear out the vegetable bin. I know once I get down, I probably won’t be able to get back up.

From the depths, I battle bouts of nausea as the kids fight in the backseat of the car. They talk over each other calling my name, wanting my attention, but I cannot answer. We don’t have a vomit bag and it’s a long ride. They need me, but I cannot be there for them.

From the depths, my husband and I debate a pit stop at the gas station at Shaare Hagai so I can use the bathroom. It’s two days after chemo and I can’t share a toilet, it’s too dangerous for healthy people.  It’s also damaging for me to hold it in. I went twice to the bathroom before we left yet chemo makes me thirsty and steroids makes me pee. I don’t want to risk other people, so I decide to hold it in. It is a painful hour and a half drive in traffic to our destination.

From the depths, I stumble exhausted and in a haze from the restaurant back to my in-law’s apartment. Waffle Bar was a treat for the kids pre-Pesach but a poor choice for me. They were out of salmon and grilled vegetables. No soup or eggs. The chemo makes me nauseous, the prednisone makes me starving. It’s a terrible combination. I stop behind an electric box on the street and vomit.

From the depths, I wipe vomit on to my sweatshirt sleeve and shake off my husbands helping hand.  I am humiliated.

My seven year old starts to complain that she needs to vomit too.

“Mommy, I also have to vomit,” she says. Over and over she repeats the refrain, her hand covering her mouth. She calls to me again and again and I try to focus all of my waning energy on my steps to get back up the hill to the apartment. She won’t stop calling my name. I snap. I yell at her that she can vomit as soon as we get back to the apartment; she bursts into tears. At the elevators, I gathered her to me and apologize. I tell her I’m sorry she isn’t feeling well and we both cry.

From the depths, I hunch over a plastic bag in the bed and continue to wretch up dinner while my husband alone struggles to put three exhausted children to bed. I’m humiliated that I can’t even get out of bed to use the toilet, I’m ashamed. I beg him to close the door to give me some dignity. In the other room, the children fight and complain.

From the depths, I plead for my husband to help me. I tell him that this is suffering, that I am suffering. He takes the piece of bread placed onto the end table for Bedikat Chametz out of the room so that I can have some privacy. Returning, he searches for a box of tissues and sits next to me on the bed as I try to stifle my wailing so as not to scare the children.

From the depths, I look down at my huge, swollen stomach and think about what I was supposed to look like this Passover. A month after gastric bypass surgery and I should have been 20 pounds lighter. The black lace dress I bought back in September for this Passover’s Seder night hangs in a closet miles away. I will be spending Seder in my pajamas in a bedroom, door tightly closed. I look down at my stomach, pinch a huge chunk of fat, and inject myself with my nightly dose of Clexane.

From the depths, I think about my maternal Grandmother, who lost her second battle with cancer over Chol Hamoed Passover. I was a year and a half when she passed; her yahrzeit merely days away. I wonder how she dealt with all of this, how she handled the depths.  I think about the Passover plates my mother inherited from her; the dairy set with the stalks of wheat. In my childhood, I happily used them to eat plates full of Matzah and cream cheese, chunks of apple cake and bowls full of banana, strawberries and sour cream, my paternal Grandmother’s blintzes. I think about my own Correlle Passover dairy plates, with the similar design, gathering dust in a cupboard. They won’t be used this year.

From the depths, I cry while typing this post and wait for the dawn. To see the sun break over the ocean and hope the waves will carry me away from wishes of a different Pesach. I fight the depression, but it is hard. I wish the reason for my exhaustion was Passover related and not chemo and cancer.

From the depths, I accept my limitations for this holiday. I mourn never being able to have wine, let alone four cups, in my lifetime again. I try to make peace that I won’t be grating horseradish this year, or making special Haroset for my nut allergic daughters, or saying the special prayer our family says in memory of the Jews who fought during the Warsaw ghetto uprising.

From the depths, I think about Passover and redemption. Will I be able to break through the shackles of my illness?

Will freedom come for me this year?

 

 

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Pink Slippers & Phase II

As a child, my parents used to buy us shoes twice a year – before Rosh Hashanah and before Pesach. Early one Sunday morning, we would all pile into my Dad’s red Oldsmobile and drive over the Williamsburg Bridge, past the Lower East Side and into Alphabet City, to Richie’s Children’s Shoe store, which had the best quality shoes for the cheapest prices. Providing quality footwear for four kids was costly, especially since we all needed sneakers, school shoes, pool shoes (for camp) and Shabbat shoes. I remember my Dad making multiple trips from the store, precariously balancing shoe boxes stacked high, and filling up the trunk of the car.

But I loved everything about shoe shopping day: the smell of leather, trying on pretty pairs of shiny black or white (depending on the season) patent leather shoes, walking around the store to make sure they fit, modeling my feet in front of those half angled mirrors on the floor,  having Richie press down on my big toe to make sure there was still room to grow, and then walking away with a couple of new pairs of shoes for the season. Truth be told, I’ve never outgrown my love of shoes, and I still cherish the pair of prize Salvatore Ferragamo open toe, black kitten heel mules with a bow and gold accents that I purchased with one of my first paychecks from Saks Fifth Avenue back in 1999.

So I was truly puzzled when in Kindergarten, during “off season,” my Mom bought me a beautiful pair of slippers. They were pink with silver stars and white faux fur lining that felt really great when I put them on. I later learned that these were going to be my hospital shoes.

I can’t tell you the name of the hospital where I spent a couple of days having tubes put into my ears and my tonsils and adenoids removed, but I remember with such clarity climbing out of the bed that first night, slipping on those beautiful pink slippers, and searching for my Mother. My slippers made a squeak sound on the shiny PVC floor and I followed the lights and the TV noises to the “family room” at the end of the hallway. There, I found my Mom with her 1970’s short feathered hairstyle and large, dark glasses, sitting on a couch against the wall watching the nightly news with her eyes closed. I was petrified to sleep alone in the hospital room, chock full of other children, and I made my Mom take me back and sit in the chair next to my bed. I also remember meal time before the surgery, and one of the other kids in the ward asking me why I wasn’t enjoying the chicken nuggets and french fries he kept dipping into his ketchup. I told him that his food wasn’t kosher so I couldn’t eat it, to which he said it was too bad cause the food was really good. I remember feeling jealous and wishing I too could eat chicken nuggets and french fries.

And I remember waking up, strapped to the gurney, before the surgery. Now, I don’t know who messed up but someone didn’t give me enough drugs. I remember being in the room with my parents and then waking up in a hallway, my bed against the wall, and I wasn’t able to move anything but my head. They must have knocked me out in the room so I wouldn’t freak out but just didn’t give me enough drugs to keep me out. I tried to sit up but I was restrained by white straps. I told myself, oddly enough, that the white strap was a bra. I started to panic and tried to get out of the bed. I lifted as much of my head and shoulders as I could and caught a glimpse at the scene in front of me. What looked like another gurney with another child lined up in front of my bed and the doors to the OR were wide open. Doctors in green scrubs were working on a patient and that was scary enough for my little 6 year old brain to register cause I started SCREAMING! The doctors jumped and someone came running towards me. I was hysterical, tears streaming down my face, arms and legs trying desperately to get out of my restrains. I remember a black mask and that was the end of the nightmare. My next memory from the hospital is of my Grandfather begging me to eat anything on the tray. I refused, the pain in my throat was too great, and I wasn’t enticed by the ice cream or the cherry ices.  I agreed to taking small sips of apple juice from a straw and I would only drink if my Grandfather was holding the cup. I’m sure I was not a great patient but the surgery was essential and I went from having back to back bouts of strep and ear infections, to becoming thank g-d a healthy kid.

So, it’s no surprise that I have a serious hospital phobia. Yarden’s 36 hour labor ended up in an emergency C-section that kept us in the hospital for two days. As soon asI could, I got us checked out and into Hadassah’s Hotel Baby so I didn’t have to spend a minute more in a hospital room. By the time Sivan was born, I had an elective C-section and I checked myself out of the Hotel Baby a day before I was supposed to. My doctor called me, furious, and asked who gave me permission to leave?! I ended up going to her office to have my staples removed and she was not pleased with me. Tani’s birth was the worst because he was jaundice and they wouldn’t let me move over to Hotel Baby. I spent four night and five days with him in the hospital, and it was brutal. I got no sleep, someone stole the towel that I brought from home, and it was awful seeing him in the light box for two days. When we were finally able to go home, I had hoped that would be the last time I ever see the inside of a hospital.

I’ve been so, so fortunate that my treatment thus far has consisted of a couple of hours each week in the Hematology-Oncology day clinic. I’ve been able to get my chemo in the hospital and then go home to deal with the after effects. Tomorrow, please g-d, is the last R-CHOP session. I call this the end of Phase I, where we have been fighting the cancer in my liver, spleen, and bones.

After Pesach, we begin Phase II of my treatment, where the Doctors will begin to treat the cancer they don’t see. I’m going to be having two rounds of Rituximab, which is the “R” in R-CHOP. I’m also going to be having two round of Intrathecal Chemotherapy, which is basically a spinal tap where they inject chemo directly into the cerebral spinal fluid. I’ve had multiple spinals taps and four epidurals, so I’m not looking forward to this procedure.

And then I’ll be having two rounds of high doses of methotrextate chemo, which requires me to be hospitalized for between 4-6 days each round.

I’m not gonna lie, I’m absolutely petrified. I’m scared of how I’ll react to this chemo, I’m anxious about being away from my husband and children for so many days, and I’m petrified to be alone at night. I was able to make it through my hospital stays at Hadassah because I was so high and happy to have my babies that I didn’t feel scared about being alone. Truth be told, I didn’t sleep much with feeding scheduled for every two hours, and then Gaby was there first thing in the morning to spend the day with me and the new baby.

But I don’t know what awaits me on the 7th floor of Shaare Tzedek Medical Center, and the unknown is petrifying.

So, I’m trying to not think about it right now. I’m trying to stay focused on fighting this cold that I caught over the weekend and gearing up for Round #6 tomorrow. I’ve got my Crave t-shirt ready and my black Sperry Topsider slippers packed. They might not be those faux fur lined pink slippers of my childhood, but they remind me of home and provide just enough comfort to get me through the day.

Please continue to daven for me, especially tomorrow during treatment: Lior Shira Batya Bat Chaya Yehudit

Thank you!

 

 

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Catnapping and Cancer

Yesterday was a beautiful day here in Israel, the sun was shining nice and strong, the flowers are blooming meaning allergy season is in full force, and the temperature is climbing! I had severe #FOMO for all my friends bracing for another Nor’easter as we haven’t had snow in these parts in quite some time. But, all that said, warmer weather means I can get outside more.

During Tuesday’s appointment with Dr. Ashkenazi, he said that my numbers were good! WBC’s were up to 8,000, platelets at 160,000 and my hemoglobin is back up to 10.1 so when I asked the doctor if that meant I could walk by myself, he told me that I could go dancing! I laughed because I haven’t gone dancing in years but I appreciated the green light to be a little bit more independent. I went to a therapy appointment right after seeing Dr. Ashkenazi and then decided to walk from Dostai street to Emek Refaim. It was glorious to just walk the streets of Jerusalem by myself again! I had my knapsack on my back, my PICC line covered and I just enjoyed moving. My thighs felt very heavy so it was slow going but I made it to my destination (Nisha) and managed to pick up some new Pesach games for the kids. But the long walk coupled with the strong sun really exhausted me and I hailed a cab home and popped into bed to do some work. My Mom brought Sivan home early for English lessons and thank g-d she had the keys since I was dozing in the bed.

I tend to do a lot of catnapping these days, especially since I don’t sleep well at night. Yesterday, Tani’s doctors kit fell out of his bed (BTW – my son wants to be a doctor – this Jewish Mama is very proud. He likes to be around to watch me do my shot, and he loves to play with his playschool kit. I think it’s his way of coping with my cancer.) at 4:30 am and woke up the entire house! I settled Tani into my bed and Gaby and Tani were able to fall back asleep but I was wide awake, so I got up and decided I might as well put in some work hours. I worked until 6:00 a.m. when it was time to get the kids up and out to school for the LAST DAY before Pesach vacation. Woohoo! By 9:00 a.m. the kids were out of the house, my cleaning help was here and Gaby was off to pick up the workers coming to move the ceiling fan in the kids bedroom. We bought the kids a bunkbed over the summer and discovered that the ceiling fan was way too close to the top bunk, so we weren’t able to use it. Since it’s going to be close to 90 degrees on Friday, we decided it was time to do the work to move the fan. It was a messy job but now we can put the fan on in their bedroom.

At 10:30 a.m., I met my friend Aliza for a walk and catch up session. I know Dr. Ashkenazi said I could walk alone, but it’s nicer to walk with someone! It was great catching up with Aliza and we took a really nice walk in the neighborhood. Up the hill to Beitar, down the hill on Yanofsky, back up the hill on Dostrovsky. My heart was pumping hard and my beret was soaked with sweat by the time we were done, but it felt AMAZING to just move. I also was impressed with our pace! It was not a stroll, we walked at a nice clip. By Noon I was back home and hard at work. I’m trying to do two weeks worth of work this week since I have treatment #6 P”G next Tuesday.  I ate lunch at 1:30 p.m. and took inventory for dinner and then went back to work.

By 2:30 p.m. I was wiped but I had a conference call at 3:00 so I looked around my house for something to keep me awake. I made a cup of Chai tea and settled back into my comfy chair with my laptop.

By 3:00 p.m. I was fast asleep.

I woke up at 3:40 p.m. and realized that I had completely missed this conference call! Cursing, I logged back onto my computer and saw the email from “P” who the company hired to take some of my workload while I’m going through cancer treatment. She was waiting on my uberconference line and wanted to know where I was.

Shit!

I picked up the phone and called her right away. I apologized profusely for being 40 minutes late for our call and fessed up that I had fallen asleep.

Her response?

“Well, what’s your excuse?”

I was a little taken aback by the question but I completely understood! It’s very unprofessional to just not call in to a conference call on time. I’ve been late to calls before for other reasons – typically when the call I have previously goes over – and I’ve always emailed right away to let the parties know that I’ll be late. But I have never fallen asleep on the job before so I was mortified and embarrassed. But I also think I have a pretty good excuse so I responded:

“I have cancer, so that’s really my excuse.”

That’s when I realized that we never told “P” the reason we needed her help in the first place. I thought that we had explained the situation during the interview process but I guess we never did. And right when I was going to tell “P” the entire story, she said that she thought that it was me because that’s what she found when she Googled my name.

Huh?

I’ll be honest, I have not googled myself in a really long time, but I wasn’t surprised that this blog would come up while doing a search (my SEO game could be much stronger though). What I was surprised about was that she fessed up to Google stalking me in the first place.

Now I know, we ALL do it. I Google people I’m interviewing for new positions or when I’m pitching a new reporter.  When I was single, I Googled the guys I was dating to make sure I really wanted to be dating them. And sometimes I’ll Google stalk people from my past just to see where they ended up today.

But the first rule in Google stalking is that you don’t ever admit to Google stalking.

So to”P” let me just say Hey Girl! And thanks so much for understanding that chemo is totally kicking my ass and I’m really sorry I fell asleep during our call. I’m hoping it won’t happen again but it might, so I appreciate your understanding.

Peace!

 

 

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Mona Lisa’s Eyebrows

Did you know that the Mona Lisa has no eyebrows or eyelashes? Gaby’s Aunt told me that during her lovely visit yesterday and I couldn’t stop thinking about it. So this morning, I decided to take a look at the Wikipedia entry for the most famous painting in the world.

Mona Lisa has no clearly visible eyebrows or eyelashes. Some researchers claim that it was common at this time for genteel women to pluck these hairs, as they were considered unsightly.

Interesting and also kinda creepy.

But the entry continues:

In 2007, French engineer Pascal Cotte announced that his ultra-high resolution scans of the painting provide evidence that Mona Lisa was originally painted with eyelashes and with visible eyebrows, but that these had gradually disappeared over time, perhaps as a result of overcleaning.

Ahh, that makes a lot more sense.

I’ve found myself at the awkward eyebrow stage of cancer. Similar to the overplucked stage of the 1990’s but totally beyond my control. What remains has turned an ashy greyish color with visible patches throughout the arch. It’s like fall foliage, each hair fell off in its time and what remains is a smattering of stubborn strands that’s pitifully hanging in there. Like those crusty washed out leaves you see peaking out of snow covered branches during the winter. You kinda wonder how come they don’t just let go but know they’ll fall off eventually and come spring time, everything will sprout anew.

I’ve become one of those people who wakes up in the morning and asks myself if this is an eyebrow day or not an eyebrow day? Does today’s social interaction warrant artificial eyebrows?

The problem is that, until cancer, I’ve never needed artificial eyebrows. I was blessed with a set of full, bushy brows that tried desperately to connect to create a uni-brow but fell short. The other day, I looked through my bag of makeup hoping for something that I could use to draw in the illusion of eyebrows, but came up empty handed.  A makeup counter is really not a sterile environment so the MAC at Mamilla was out of the question. I decided to try my luck at my local SuperPharm on Derech Chevron.

If you’ve ever been to a SuperPharm in Israel, you know to avoid certain aisles. At least, I know to avoid certain aisles since I prefer to shop and browse without being harassed. I decided that I was desperate enough to try my luck at what appeared to be a Mission Impossible. I entered the store and walked carefully down the shampoo aisle and stopped right before the rows of toothbrushes and toothpaste. I peeked my head around to see if the coast was clear. It was actually quite ridiculous and I was happy the aisle was clear so no one could witness what would end up being a snatch and grab. I rounded the corner and jogged past rows of nail polish, emery boards and perfume bottles. This section of SuperPharm is totally foreign to me and I had no idea where to turn to find an eyebrow pencil.

And like that scene in Jurassic Park, where one Velociraptor makes eye contact with his prey while two others come from each side to corner their meal, I make eye contact with her. She smiles and calls out to me; I panic. Two more start to make their way over and I feel trapped.

Shit, shit, shit, shit, shit.

I tried to tell them that I’m okay and I don’t need help but they’re persistent. In my panicked state, I forget how to say pencil and eyebrows in hebrew.  Finally, I see a row of what could be eyebrow pencils and I lurch forward, grabbing the first brown one I see. I wave it triumphantly at the makeup ladies and make a break towards the check out counter, leaving the three women behind some invisible barrier of the makeup section.

Once home, I actually looked at the eyebrow pencil. It’s from a brand I’ve never heard of and one side has a round brush while the other side has a brown, oily “pencil” that you reveal by swiveling the tube. I set to work on drawing in my eyebrows, trying to use what’s left as a guide. I think about the Wooly Willy toy of my childhood as I stare at my baldness, wondering if this magic pencil can draw in what used to be my face.

During my first attempt at drawing in eyebrows, I somehow draw in a surprised expression. It’s awful. I scrub it off with a baby wipe and try again. This time, I’ve managed to make one side thick and one side thin, and so my eyes look lopsided. I wipe away attempt number two and try again. Carefully, drawing upwards in measured strokes, I follow what remains of my curved arch. I lean back and look at the results. I move my head from side to side. It doesn’t seem too bad! Third attempt complete. I put on some more makeup, my wig, and head out for my meeting.

Five hours later, I’m back in PJ’s and waiting for the kids to come home from school. I’m sitting in my chair in the living room, work document open on my laptop. I’m hot so my hat is next to me on the couch; I was too tired to wash my face or take off my earrings. Engrossed in work, I didn’t even hear the key turn in the lock. The kids burst into the room, one by one, each calling out to me with whatever they wanted to tell me about their day. And then, just like that, they fall silent and stop short of the living room.

“Oh Mom, what did you do?” wails my 7 year old.

“What? What’s wrong?” I ask.

My nine year old starts giggling while my four year old looks scared. I look towards my husband for a clue.

“Who did that to your face???” she asks.

“What’s wrong with my face?” I ask.

The four year old points at my face, no sound coming out of his open mouth.

“I don’t like it,” declares the nine year old, webbed fingers over her mouth as she tries to stop laughing.

My husband raises an eyebrow and I realize they are upset about my eyebrows. Did they smudge? I hadn’t looked at my face in a while so I assume something must have happened with the makeup during the course of the day. I struggle to rise from my chair and leave my three horrified children behind. I make my way towards the mirror in my bedroom and have a look at my reflection. It wasn’t pretty.

“Why did you let some kid draw on your face, Mommy? It’s not Purim anymore.” My seven year old has followed me into the bedroom. She was right, it did look like some kid drew eyebrows onto my face.

I smiled at her in the mirror and went to the bathroom to wash my face. It looks like I’ve got a lot of YouTube video tutorials in my future.

 

 

 

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Mondays at Shaare Tzedek

It’s Monday, six days post RCHOP #5 and I’m alone in Dr. Ashkenazi’s office at Shaare Tzedek Medical Center. I’m exhausted and haven’t slept in six days. The neupogen shot coupled with the prednisone on Friday caused tremendous pain over Shabbat. So much so, that for the first time since I started treatment, I needed to take medication for the pain. I couldn’t walk or stand for Havdala on Saturday night and the kids were having meltdown after meltdown as I physically got worse and worse in front of their eyes.

Tuesdays are my Shaare Tzedek days but Dr. Ashkenazi has a conference so he moved my appointment up a day. Gaby wakes up sick on Monday morning and it’s too late to find someone else to take me to my appointment. He drops me off then goes home to sleep, eventually pack he’ll pack up and move in with his parents for a couple of days.

I walk tentatively from the car inside the new building and through the metal detectors.  The shoulder straps on my knapsack dig into my back and I wince in pain, keeping my head down as I focus on my feet. I hug the wall for balance, I feel lightheaded and spaced out and pray I don’t pass out. I’m thankful that I don’t have to wait long for the elevator and soon I arrive at the unit on the 6th floor. I press the button for my number and collapse into a chair, I close my eyes.

Mondays in the hematology-oncology day clinic is a different world. I’m disoriented by the drastic differences around me. I’m #152 today as I glance at my red bracelet after checking in, I find two empty seats in the crowded waiting room. I SMS Gaby to let him know I’m in the unit and to make sure he made it home okay, he is back in bed. I use my knapsack as a pillow and try to nap, alert for each number that’s called. Room #1 is the nurses station, room #2 to get your blood drawn. There’s a giant computer screen where we are all just numbers, little boxes stacked neatly in a row depending on the purpose of your visit. I noticed my number under room 1, room 2 and underneath Dr. Ashkenazi’s name. I’m too tired to alert the receptionists to the error. With a PICC line, I never need to go to room #2. My number is called and I take my bag with me through the doors where wilted streamers – survivors from Purim – hang weakly by a thread. I stop outside the nurses office and wait for the number before me to finish, an elderly Arab man who still needs to weigh himself before they order up his treatment IV.

My nurse for today waves me into the room and I hesitate for a minute. Usually I check in, get my temperature and blood pressure taken, talk for a few minutes about how I feel and get my bracelet put on me. Not today. The unit is too hectic for check in and my nurse needs to clean and sterilize my PICC line and take my blood ASAP. She is in a hurry and I start to take off my shirt but she stops me, no time for that today. She pulls up the sleeve so that my PICC line is exposed and then pulls the curtain around us for privacy. She asks me questions about how I’m doing and I try not to cry. I shrug because we need more help and I don’t know how to ask. I shrug because once again the children had a terrible Shabbat. I shrug because on Friday night my 9 year old daughter had a nightmare that I was a corpse.

“You’ve made it through 5 RCHOP’s!! That’s really, really amazing! When is your next one?”

She’s excited like I just completed majority of the course work for a degree. I’m confused by her cheerleading. Is this an accomplishment? What exactly is the accomplishment? That I’m still breathing?

“When’s your next round?” she asks.

The bed next to us is a mess of medical supplies, syringes and gauze pads. Each nurse has their own style when it comes to the PICC line. Today’s nurse is more like the absentminded professor. Realizing that she doesn’t have the vials of Heparin, she disappears and I sit and wait, my left arm resting at an awkward angle on the bed. After fifteen minutes, the nurse doing check in peeks behind the curtain and asks what I’m doing. With my PICC line exposed and the bed a war zone of supplies, I would think it were obvious but I know this nurse is young and stressed and so I tell her that my nurse went to get the Heparin. I’m getting cold and wish she’d hurry back so I can put my sweatshirt back on. Patients keep poking their head in to yell at the nurse; no one has patience today she responds back. They are all waiting for their treatment, which have been ordered from somewhere in the building but haven’t arrived yet in the unit. In my head, there are men and women in HAZMAT suits working in the basement, filling up orders of IV treatments like line cooks wiping down clear plastic bags of poison instead of plates of protein.

My nurse returns and sits opposite me on a chair. She needs to reorient herself and she swivels the cart with medical supplies. More alcohol gauze pads, new blue plugs for the PICC line, adhesive, syringe, saline get piled up on the bed. Finally, she puts on gloves and is ready to flush both lines and draw blood. I look away and she remembers her question.

“When is your next round?” she asks.

“Three days before Pesach,” I respond.

“I’m sorry, but you know you’re not going to have a good Pesach this year.”

I already know that Pesach is going to be hard, but it was refreshing to hear it from someone else. I alternate between zoning out and answering questions. It’s time to switch the bandage and, like every week, the threads of the stitches are stuck. She apologizes as she pulls, the stitches rip my skin and I gasp in pain. I resist telling her to use the tweezers in one of the kits to gingerly pull the threads from the bandage. It’s not her style, only one nurse even bothered to do it that way and I’ve had the PICC line since December. There’s no time to be careful, the ward is full and everyone needs something. Who cares that it hurts me? She tells me that I have the option to remove the PICC line whenever I want, that if it’s really bothering my life I don’t need it. I tell her that Dr. Ashkenazi wants it in there and so I’m just going to suffer through.

Finally, it’s over and I go back outside to the waiting room to wait for my appointment with Dr. Ashkenazi. It takes minimum one hour to get the blood test results so I settle in and try to sleep. The crowd has thinned and treatments inside have already begun. I sit and stare at the numbers on the screen and wait to be called.

 

 

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3:00 a.m.

3:00 a.m. – This is when it gets hard. When I wake up at 3:00 a.m. after a full day of prednisone speed like behavior and I can’t fall back asleep. I blame my bladder and the night sweats. For five days after Chemo, I have to make sure to go to the bathroom whenever I feel the urge. It’s dangerous to hold it in and so as soon as I feel the need, I run to the toilet. It’s exhausting and I feel like I’m pregnant all over again, waking up multiple times to go to the bathroom during the night. I crawl back into bed with my iPhone, checking in with my work Slack to see if I missed anything important. It’s mostly complaints about the snow in Philadelphia. I close the phone off and try to get back to sleep, my PICC line cover sliding off my arm to the wrist. I gently yank it back up and rest my arm on a pillow. I close my eyes. From the other room, I hear a shout and then the adrenaline jolt. Seconds later, Yarden is in the room. She runs to Gaby’s side of the bed but he’s sleeping so I tell her to come over to me and she tells me about her nightmare. A grasshopper jumping on her skin, trying to eat her. I hug and comfort her, smooth her hair and give her a kiss. I feel her heart beating fast in her chest. My own heart is racing as well but I pay no mind. We embrace for a few minutes and then she says she feels better and can go back to sleep. I watch her run on tiptoes back to her bed and minutes later, hear the soft breathing of sleep.

3:30 a.m. – My mouth is dry and I take a drink from the water bottle next to my bed. I’m nauseous but I don’t know if it’s from the chemo or the lack of sleep. I’m sweating so I pull off my pajama bottoms. I feel waves of sweat form on my head and my cheeks flush. I turn my phone back on and check my email. I send a message to my Rabbi about Pesach cleaning. Pesach doesn’t care that I have cancer, Pesach doesn’t care that I have R-CHOP three days before Seder night. I sing the “Pesach is coming song,” in my head and try not to panic. Yiheyeah Beseder (it will be okay).

3:45 a.m. – I scroll through unanswered WhatsApp messages. I respond to my friend Yael who has been selflessly coordinating meals for us since December. I message a new cancer friend who had her 5th R-CHOP the day before mine to see how she’s feeling. I message another cancer friend who just finished all of her treatments for DLBCL to ask how she manages to stay so positive when it’s late at night, and you’re alone with your thoughts, and you’re scared. I email the Mommy from Tani’s gan who cooked dinner for us on Tuesday night to thank her for the delicious food.

4:00 a.m. – My friend Jeorjie in the States is awake so we WhatsApp about her birthday weekend. I think about her birthday last year, it seems so close yet a lifetime away. I was a different Shira back then. I was Shira, today I’m Lior. We rang in her milestone birthday with her family, back on the Upper West Side, in my old stomping grounds. I had just gotten my hair highlighted and I walked more than 50 blocks to the neighborhood. I felt young, healthy and happy. I missed Gaby and the kids but it was such a great trip.

4:05 a.m. – I WhatsApp Mom and tell her how I’m feeling. I don’t think I’m going to be able to make it over there today. We were hoping to take a walk to Nisha and Barbara Shaw on Emek Refaim to look at some of the Pesach gifts. I need a hostess present for my Mother-in-law.

4:10 a.m. – Paranoia kicks in and I realize I haven’t spoken to my Mother-in-law since before my treatment. I wonder if she’s mad at me. I hope she’s not upset with me. Should I WhatsApp her? Call her? Leave her alone?

4:15 a.m. – I visit Lymphoma.org and read about my cancer. I read the statistics that I’m not supposed to read. I start to panic, my chest feels tight and heavy.

4:18 a.m. – I say Tehillim

4:30 a.m. – Mom is up and we WhatsApp. I tell her I’m not mentally in a good place and I need to get out of my head. I ask her to come over here this morning to help me. She tells me to make myself a tea and sit up in bed to help with the nausea. I’m counting down until I can take my Nexium. I sit back up in bed.

4:45 a.m. – I watch a couple of Tasty videos about the many ways you can make chicken nuggets. I scroll through my Facebook feed and see a link to Brian Blum’s latest article about his cancer diagnosis and treatment on The Jerusalem Post. I read it and relate.

5:00 a.m. – I close off my phone and give up trying to sleep. I put on my pants and a sweatshirt, the sweats have stopped and now I’m cold. I follow my Moms advice and go into the dark kitchen and press the button on our Tami 4 to heat up the water. Comfortable in the dark, I easily find my tea mug. I turn to the Ikea bookshelf that we turned into a kitchen pantry and find the bag with my Chai tea. I pull out a tea bag and put it into the mug. I add the hot water and walk to my chair in the living room. I settle in and boot up my computer and think about my new life. I think about my new life every day. All the things I want to change when cancer is over. Then my mind wanders to the dark place and I try to reign it back in and think about my new life. Learning how to ski next winter with the kids. Buying a new pair of running sneakers. Going to the beach this summer without a PICC line. My hair, eyebrows and eyelashes growing back. Eating healthier. Making the kids eat healthier. Being a more active family. Walking the kids to school every morning instead of driving.

5:10 a.m. –  I start writing this blog post and then think about how my new life seems so far away. I want to stop spending my life behind a computer. I want to be outside, talk to people, meet with people, go places, see new things. Breathe fresh air.

5:15 a.m. – I sigh and think about cancer costs and life costs and money. New Pesach dresses and outfits for the kids. Summer camp for three children, while not what it costs in America, is still a fortune here in Israel. I think about the person who anonymously left an envelope with a significant amount of money, with our names on it, at the Meuchedet on the Tayelet. Gaby and I cried when we opened the envelope, that someone could be so kind and generous. We want to pay it forward when treatment is all over. I think about where I want to give Tzedakah to next, I want it to be a food bank for Pesach.

5:30 a.m. – I hear noises from the kids bedroom and wonder who will be the first out of bed today. I need another 30 minutes to compose myself, to get out of the dark place, to be able to greet the children with a hug and a smile.

5:45 a.m. – Email ping from Dad. He says it’s 65 degrees and I might be overdressed. I smile and write back that it’s not that, it’s really the meds and that I’ve given up on sleeping. I consider opening the trissim but worry the noise will wake everyone up. 15 minutes until I can take my Nexium and my alarm goes off. I remember that I need to send Sivan with a signed permission slip for her Tiyul next week. I wonder if it’s too early to pack the candy bags I’m making for my nephew’s Bar Mitzvah next Shabbat. I won’t be able to attend but at least I can represent with awesome candy bags.

The light is filtering through the holes in my trissim and from my chair in the living room, I can see dawn breaking through my kitchen. I think about the fresh basil we got in our Hartman box yesterday, that Gaby’s cousin delivered. I’m going to make dairy and nut free pesto today.  Yesterday, I was sitting on the Mirpeset talking to my friend Shulamit, smelling the fresh mint that I planted from the Mishloach Manot we got from the Etzion shul. That reminds me that I need to email Tamar to thank her for delivering our box since we didn’t make it to Megillah. I loved the vegetable theme; they worked with Leket Israel. I read somewhere that if you surround yourself with greenery it gives you a sense of wellness. I breathed in the fresh mint and looked at my new Lemonquat tree. The fruit is coming in beautifully and I wonder when I’ll be able to eat them without getting sores in my mouth.

I remember my tea and take a sip. The cinnamon is strong yet soothing.

5:50 a.m. Ten minutes to stop the tears. Ten minutes left in the dark, with my thoughts and fears. Matchbox Twenty’s song 3:00 a.m. pops into my head…”Baby, it’s 3:00 am I must be lonely” then it changes to the brilliant guitar riff of Santana on Smooth and I think back to the late 1990’s when I lived in a closet in the Westmont with two roommates and barely any space to do Taebo at 6:00 a.m. before heading downtown to my first job in PR.

6:00 a.m. My alarm rings. I dry my face. It’s time to face a new day…with a smile. Tani is awake.

 

 

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Treatment #5

Thank g-d, we had a wonderful Purim this year. I started a Purim blog post but then decided to bake hamentaschen with the kids. I hope to finish it up a little bit later. Highlights included Sivan’s 7th birthday and the fact that I had the strength to bake her a cake. Tani was home sick with another strep infection, so I treated him to the beaters and bowl after making the frosting. Yarden was adorable in her panda costume and we were lucky that Tzipporah, a volunteer, came over to the apartment to read Megillah for all of us. For the most part, I stayed indoors since I can’t be in big crowds, but I did venture out really early to deliver Mishloach Manot to three friends in the neighborhood. My costume was a big hit and I was essentially hermetically sealed inside the giant T-Rex costume. But by Friday night, all of the hamentaschen baking, Shabbat cooking, Seuda making, Mishloach Manot organizing and packing, really just hit me and I was wiped. I passed out on the couch at 7:30 p.m. and Gaby waited up until 10:00 so he could wake me for my shot. I was back in bed and asleep by 10:30 and spent most of Shabbat just resting.

Sunday and Monday were physically my best days and on Monday, I decided to take myself on a walk to the Super Market on Derech Beit Lechem. I promised everyone I would walk slow, be careful, and I wouldn’t buy too much. I left the apartment to beautiful sunny skies and walked down Efrata street, where I encountered a woman puking her guts out on one of the trees. I quickly jumped into the street to avoid her and whispered sorry to myself since I couldn’t help her and jogged a bit to get away from her. Poor woman! The walk to the Supermarket was pretty quick since it was downhill and I had decided to make the kids tacos for dinner. Unfortunately, Falcon (aka Super Deal) was out of taco shells so I decided to improvise and buy tortilla chips instead. I picked up some salsa, ground turkey meat, shredded lettuce and a block of cheddar cheese. Then I started the walk back home and boy was it harder than what I remember it to be. But, I managed, even if it wasn’t at the pace I once was able to do and I walked up Dostrovsky with a packed bag over my shoulder and made it home! To say that I felt like a champion is an understatement. I rested a bit and then got to work on dinner, putting the meat into the freezer for future use. I grated the block of cheddar, cut up tomatoes, cucumbers, peppers, rinsed and dried the lettuce, opened cans of beans and chick peas and made some guacamole. I think the kids loved it but I’m not sure, I went back to work and managed to put in an almost 10 hour work day.

I think it was the high of the holiday and Monday’s independence, that really helped me push through yesterday’s R-CHOP. It also helped that I brought headphones so I could block the noises in the unit and I was able to sleep from 10:00 a.m. – 2:00 p.m. I slept through almost all of the Rituximab and most of the chemo. I developed a rash on the back of my head so Gaby closed the curtain around my bed and I was able to endure treatment without a head covering. When Dr. Ashkenazi came to see me, he was all smiles at my bald head and took a quick look at the rash. He agreed that I should try to air out my head as much as possible to keep the rashes at bay. We had a really nice meeting and by 4:00 p.m. I was discharged.

I’m pretty wiped so that’s all the energy I have for today. Thanks for all the wonderful and encouraging messages! Only one R-CHOP left please g-d in Phase I of my treatment, then after Pesach we start Phase II.

Please continue to keep me in your tefillot: Lior Shira Batya bat Chaya Yehudit

 

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Cancer and Taharat HaMishpacha (Jewish Family Purity Laws)

Its been almost two weeks since we got the wonderful news that thank g-d treatment is working. It took a long time for me to process that information. Primarily, because I’m still processing my diagnosis. There are days when I still just don’t believe that I have cancer, when I look at my new self in the mirror and wonder how I got here in the first place. I know I should be shouting from the rooftops but instead, I’ve been very depressed.

Menopause kicked in around the same time as the news that treatment is B”H working and I’ve been dealing with a lot of emotions and physical changes. I was warned that it would happen and yet, it totally took me by surprise. Sure, we weren’t actively looking to add to our beautiful family, but knowing that the option has been taken away from me because of cancer treatment has been a lot harder to handle. It’s funny, but I would joke that I couldn’t wait for menopause so I could be done with the monthly bloating and cravings, the surprise acne moments and the cramps, the days when you think you’re done so you don’t wear a pad or a panty liner and then you stand up suddenly and realize that yikes, you’re still not done. The monthly cost of tampons, pads for evening flow, pads for light flow, panty linters, etc. I thought I was ready to be done with all of that, but emotionally I’m just not there yet.

And then there’s the Mikvah. I thought I would feel so happy to be finished going to the Mikvah since I have never felt comfortable with that Mitzvah. I do not connect to Taharat HaMishpacha (Jewish family purity laws). I follow the rules because I’m a rule follower (for the most part) and Taharat HaMishpacha was something I had to follow once we got married. But I just never personally connected with it, no matter how many shiuring I listened to or lectures I attended. I remember my Kallah (bride) classes before our wedding. I did a three day intensive course with a Kallah teacher in Kew Gardens Hills and I told her that all I wanted to know were the Halachot (laws). She was frustrated with the request since she typically taught the laws over a six month period where she educated engaged women about the beauty of Taharat HaMishpacha, going beyond the actual laws. But, I had three days of limited time to spend on Taharat HaMishpacha and so I told her just tell me what I need to know, and leave out all of the emotional stuff.  Maybe that was a mistake, I’ll never know. But I’ve never been gung-ho about Taharat HaMishpacha and Mikvah was really just a culmination of something that I’ve personally never really liked to do.

So, the fact that I’m actually sad about having one more Mikvah session in my lifetime ahead of me is truly baffling. I thought I would be happy about the day where I’d finally unpack my Mikvah bag and use it as a beach bag. The Mikvah robe that I would use all year round, instead of once a month. The flip-flops and the bottle of Jo Malone body cream, the comb and the spray deoderant, the worn ziplock bag full of lip balm and dental floss, spare glasses and empty contact lense case, the tweezer and razor, and the white Siddur hidden in the inside zipper compartment of the bag.

I thought I would be happy about no longer counting days or needing Bedika clothes, of rearranging conference calls so I could fit in a dunk, of rushing and waiting impatiently depending on what chaos was happening back at home.

What I will not miss is the physical bodily inspection before the Mikvah, the strange hands picking stray hairs off of my back or examining my cuticles. The eagle-eyed woman watching as I immerse multiple times, holding towels or my robe over my head while I cross my hands over my naked body to say the bracha. I have had plenty of unfortunate moments with Balaniyot (the women volunteers at the Mikvah) and have had some nice ones as well. But for the most part, needing to immerse under the watchful eye of a stranger has always been very uncomfortable for me. Now, all I wonder is which Balanit will bear witness to my final immersion, and how will we both react. Unfortunately, timing my final Mikvah visit might take a while, so I have a few more weeks to mentally prepare for the finality of Mikvah.

Instead, I’ve been preoccupied with the physical changes that menopause brings, which has been added to the wonderful side effects of chemo. I’m talking about hot flashes and sweating. Remember that horrible scene from one of those Sex in the City movies where breast cancer survivor Samantha is giving a speech to a roomful of breast cancer survivors and she can’t stop sweating so she rips off her wig and starts to fan herself? Then all of the bald women in the room rip off their wigs in solidarity and you’re supposed to have a feel good moment? I’ve always hated that scene, I felt like it was such a cheap Hollywood moment in what could have been something a lot more meaningful and powerful. But now, I can understand that moment as I find myself searching for corners so I can pull off my hat and fan my sweaty, bald head. I try to make a joke out of it for the kids and ask them if they can see steam rising off of my head whenever it gets too hot and sweaty. They laugh at me but inspect my head for steam nonetheless. I spend hours putting on my hats and then, when the hot flashes hit, pulling them off. This is annoying during the day, but imagine how I’m sleeping when this happens throughout the night. It’s exhausting.

So here I am, soldiering through. I have two more RCHOP’s ahead of me, then two more R’s (Rituximab) following Pesach and then Phase II of treatment that’s still TBD. I have at least another PET CT in my near future, and possibly a couple of spinal tap chemo sessions as well. My Dr. is still trying to figure out Phase II so we are anxiously awaiting my future treatment plans.

In the meantime, I’m hoping Purim will lift my spirits and help me out of this menopause induced funk.

Send chocolate!

Please continue to keep me in your prayers: Lior Shira Batya bat Chaya Yehudit

 

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