The Pub


He walked belly first through the sliding glass doors, leather jacket unzipped and motorcycle helmet tucked underneath one arm. We were the only ones in the waiting room and he casually nodded in our direction. I didn’t recognize him so I just assumed he was one of the people behind the curtain, the guys in the booth watching to make sure that the test was conducted properly.

We were forty minutes early to my PET CT at Shaare Tzedek Medical Center and I already had the first appointment. We were so early that the receptionist wasn’t ready to check us in until 8:20 even though she was sitting at her desk with seemingly nothing much to do besides check her Facebook and Instagram.

Dr. Igor, who was just as rough and unpleasant as during my first PET CT, decided to place the hemlock into my right hand. Once again, he commented about my crappy veins as he slapped the needle repeatedly in my hand to get the blood draw for the glucose count. I winced each time he slapped my hand and he finally gave up, muttering under his breath about the need for a PICC line while preparing to prick my finger. He gave me no warning while he was doing any of this and so I gritted my teeth and looked away. I much preferred the finger prink to his slapping the needle in my hand. He wrote 90 on the tape on my hand and told me to sit in the waiting area.

A technician put me on the scale to weigh me and I sighed at the number. I told him clothing and sneakers adds at least two kilos and he laughed. Even in cancer, I’m concerned with the numbers on the scale.

I’m anxious for today. This is the day where we’ll see how my body is responding to treatment. I have been nervous and emotional for days leading up to the PET CT. I am hoping for the miracle, and trying not to think about anything beyond that hope.

The technician who weighs me tells me that my test will be delayed since the radioactive material isn’t in the building. I thank him for the update then notice the box of Captain Crunch underneath his arm. He enters the room marked for employees only and settles in for coffee and breakfast. I tell Gaby that I find it ironic, how a man who basically escorts people through a test that will primarily detect cancer in their bodies, is poisoning his own with loads of sugar each morning. I have become really judgmental with cancer, but will eat my first bite of sugar in three months two days later.

We sit in silence while I daven, Gaby playing some sort of sci-fi game on his iPhone. They roll the radioactive materials in minutes later and I flash back to that scene in Back to The Future, the first time I ever saw that symbol. Minutes later, that material will be coursing through my veins.

Mr. Motorcycle has replaced his leather jacket with a white lab coat and comes to get me, explaining that the test will take an hour and 15 minutes but Gaby is welcome to wait in the waiting area. I wave goodbye and follow him down the hall and into the room. I’ve been here before so I know the drill, I sit in the chair and place my hand with the hemlock on the tray. We don’t speak for a few seconds and he puts my weight into the machine. The coiled clear tube dangles next to me and I know it will be hooked up to my hemlock. I want to ask him his name but see the tag says Yair and so my curiosity is quashed as he starts to talk. He hooks me up to the machine and immediately my hand goes cold. It’s the saline flush to make sure it’s hooked up correctly. After the saline, they’ll inject the radioactive material while he exits the room. There’s a blue cinderblock propping the door open so it’s easy for him to make a quick exit. I wonder how safe it is for the other technician to be walking around in sandals.

Suddenly, the beginning strains of Evanescence’s Bring Me To Life filters through and I’m impressed. I want to meet the DJ behind the music pumped into the pre-PET CT room!

We get to the chorus before Yair pulls his cell phone from his lab coat and I burst out laughing. I tell him that I thought it was music they play in the room and he smiled, explaining that he often misses calls because he likes to hear more than just the beginning strains.

“It’s time for the radioactive material, are you ready?” he asks.

I shrug and he presses a button, wishes me good luck, and leaves the room.

The geiger counter starts going nuts, crackling and static noises fill the room as the machines whirs and my hand gets colder and colder. With a beep the machine starts to cycle down and Yair returns.

“Welcome to our pub, it’s an Irish pub!”

He opens a door to an empty room painted blue with three layz-boy leather chairs separated by short walls on both side for privacy.  There are three clocks on the wall and each area has a small white table. I smile at him as he grabs the clear container that reminds me of a bedpan, which is topped with a clear plastic cup.

“Here’s your beer.”

I like Yair, in a different life we could have been really good friends. Riding motorcycles and drinking beer at an Irish pub while listening to Evanescence. But instead, he’s setting me up for an hour in a room with lead walls with a bitter clear liquid that I need to drink by the cupful every 10 minutes until I can be placed into a machine that will capture whether or not RCHOP chemo has worked to eradicate my cancer.

He wishes me good luck again and disappears back into the radiation room to prepare the next patient. I settle into my leather chair and start rocking back and forth. I’ve brought my cell phone with me but Yair said I can’t use it for another 20 minutes. I drink the first of eight cups of bitter, disgusting liquid. I watch the clock and try not to panic. I realize that I’m sitting in the same chair as my first PET CT and consider moving. You know, Meshaneh Makom Meshaneh Mazal (change your location, change your fortune) but then realize that that thinking is just crazy so I keep rocking. With the toe of my shoe I gently push the little table. Yup, it still wobbles.

After twenty minutes, I’m able to pick up my phone. I sext Gaby a picture of an eggplant and start playing around with Snapchat. I send the picture at the top of this post to my Mom with “OMG, look what this radiation crap DID to me!!” She doesn’t know from Snapchat. She responds asking if I want salmon for lunch. Being radioactive means I can’t be near pregnant women, children and anyone with a compromised immune system for six hours, so I’m going to my parents house to ride out the radioactivity. I tell her not to worry about it, I’ll find something in her fridge.

The sandal wearing, Captain Crunch eating technician is back before I know it and tells me that I have ten more minutes. He’ll let me know when I need to go to the bathroom, which is mandatory before the test. I text Gaby to let him know I’m almost up and then go to pee.

It’s cold in the PET CT room but I’m allowed to wear my beret. I take off the kamayah (good luck charm) that’s been around my neck since shortly after my diagnoses and get on the table. I’m allowed to wear my clothing, even my bra with a metal underwire is okay. The machine is not completely enclosed so I don’t panic. He hooks me up to the dye and it burns like heck going in. I have to keep my hands over my head the entire test and my left arm with the PICC line begins to tremor. I will spend fifteen minutes trying desperately to keep that arm still.

The technician will wish me Good Luck more than ten times. I started counting after the fifth time. When the test is over, I go back to Gaby and observe the now packed waiting room. The staff works like a well oiled machine. As soon as I’m done, the next person is ushered into the exam room, and it will work that way until they close for the day. I sit next to Gaby and put on my sweatshirt. He gathers his stuff and leaves to go up to the sixth floor. The nurses asked that we let them know as soon as the test is done, so they can call down for the results. I observe the various age groups of the people in the room; most of the patients are more than 20 years my senior.

A technician escorts an elderly religious woman past me. She is crying and clutching the technician’s arm in fear, begging her not to use the needles. She is terrified of the test. I feel so badly for her that I say a quick prayer that her results are clear and that she doesn’t have cancer. I can’t imagine how she would handle treatment if she is petrified of the PET CT.

I then thank G-d for my strength. For breaking my wrist and my heel, for the bronchitis when I was 8 and the pneumonia that made me miss a New Year’s Eve party when I was twenty. For the tonsilectomy when I was in first grade that led to my hospital trauma (one day, I might share) and to the three C-sections and one D&C. To the pseudotumor cerebri that I had to keep quiet from everyone except close friends and family because it would have hurt my shidduch opportunities, and for the botched spinal tap over Thanksgiving weekend. For that time I got stitches, and for getting all four wisdom teeth pulled before July 4th weekend.   And for the time I showed up at Camp Hillel on visiting day after being kicked out and learned a bunk mate had hepatitis and that I needed a shot in the ass.

I thanked G-d for all of those experiences, because it gave me the strength to deal with cancer.

Gaby returned from the sixth floor and I slung my heavy knapsack across my back and we walked out of the hospital. I kept my head down and my arms close to my body to avoid getting pushed by people and was so grateful for the fresh air. I was quiet walking to the car as Gaby explained why the nurses wanted to know about my PET CT. They plan on discussing my case on Tuesday morning during their weekly meeting. All the hematology-oncologists meet on Tuesdays to discuss cases, mine is apparently on the docket this week.

We decide to go to Emek Refaim so Gaby can get some lunch and he can pick up some whole wheat crackers. My Mom has eggs and veggies at home so I had a plan for breakfast. There was no warning though. Nothing in particular to trigger my meltdown. It wasn’t a song on the radio or the street we were driving down. It wasn’t a smell in the air or anything Gaby was saying. But mid-way down Tschernikovsky street, I just started crying and it took a really long time until I could stop.

We will P”G get the results of my PET CT on Tuesday, which is also round #4 of RCHOP. Please continue to pray for me: Lior Shira Batya Bat Chaya Yehudit.

 

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40 Minutes

“The test will take 40 minutes today,” said the young, frum MRI technician as he pulled off the face mask and placed a pillow at the head of the machine.

“You’ll be much more comfortable this time,” he continued, smoothing down Shaare Tzedek logoed sheets over a triangle wedge pillow. “We’re doing the lower part of your spine. What type of music would you like to listen to today?”

Two MRI’s must make me an expert but I am shaky and having a rough day. Day six post R-CHOP tends to be the hardest and I feel like I’m going to collapse. My fear of enclosed spaces diminishes as I feel my knees buckle; I steady myself against the white, cold slab that will soon whisk me into the machine.

I notice the technicians gold marriage band as I gingerly lay down, he’s talking to me in Hebrew but I’m not really listening. He never touches me. I am wearing two gowns and a new pair of socks and the room is very cold. The technician lets me keep on my chemo cap, but I already know it’s too thin to really protect my bald head from the cold air blowing inside the machine. He hooks up the hemlock in my right arm to a long, thin tube where the dye will be injected mid-way through the test, and places a plastic emergency button that looks like the pump of a blood pressure cuff into my right hand.  My hand will quiver on this pump for forty minutes, but I will never press it.

“Enya,” I request, through parched and cracked lips. I’m dehydrated.

He talks about the soft music that’s already pumping through the headphones and I just nod. It doesn’t really matter what music he plays, I just need to close my eyes.

The door to the MRI room slams shut and the noises begin. Loud, clanking jackhammering over the blaring of a siren and the slab moves me deep into the machine. I  can’t hear the music over the noise from the machine but feel the rush of cold air on my face, permeating through my cap to coat my bare skull. I stare at the white walls of the machine inches from my nose and try to keep still.

I close my eyes.

I feel the warm, summer sun beating down on my skin. I’m standing outside our home up North and it’s early morning before the unbearable heat of the day. I’m wearing a pair of overalls and a floppy straw hat, my long grey hair is wrapped tightly in a bun at the base of my neck. I have a pair of gardening sheers in one gloved hand, with the other I’m shielding my eyes against the sun’s rays to survey my garden. Tidy rows of cucumbers and celery. Cherry tomatoes straining against the vine. Two types of basil flank parsley and coriander. Radish, dill, bok choy, carrots and sweet potato. Romaine lettuce and butter lettuce and mangold and beets. Beyond the vegetable patch are orange groves and lemon trees, a grapefruit and avocado trees sway in the distance, and on the mountain top miles from our home is an ancient olive tree I like to visit in September before Rosh Hashanah.

Gaby joins me in the garden and I put him to work, cutting ripe vegetables for dinner and adding fresh soil. We have a drip irrigation system that left the ground moist from the morning’s watering, and I massage my fingers into the pulsing earth. I breathe in the fresh, green smells of the garden and smile up at him as he collects my gardening tools and puts them into the shed that’s adorned with a sign one of the Grandkids made for me at gan. “Savta’s Garden” in blue and white mosaic tile against the brown plastic IKEA shed.

We link hands and start off on our hike, the dogs dance against each other and race ahead. My legs are tan, spotted and strong. Sweat starts to roll slowly down my back but moving feels so good.  We talk about the kids visiting that afternoon; I’m excited to see them. We’re going to Dag el HaDan in the afternoon to buy fresh fish for dinner, I’ll use herbs from the garden and organic olive oil to steam them in parchment paper.

My kitchen design is traditional farmhouse style, with a long wooden table and shabby chic chairs. It surprises me since my taste is so modern and my eyes linger over the rooster hand towels and baby blue accents. Next to the sinks with the doctors taps are cow and pig cookie jars. I love these cookie jars, they’re the focal point of my kitchen. I keep freshly baked chocolate chip cookies in the jars whenever we’re up North; my Aunt Irene’s recipe but using freshly squeezed oranges from our grove. I peek inside the pig and noticed we’re running low. I’ll make a fresh batch with the Grandkids when they wake up tomorrow morning, it will be a great activity and my kids can sleep in.

“Can you hear the music?” the technician’s voice breaks through my fantasy.

I realize he has put on Enya. Afraid to move, I grunt in appreciation. The banging of the machine roars louder in my ears.

“Seven more minutes,” he says.

It’s Friday night and I’ve spent half of the day vomiting. Gaby and the kids helped me to the kitchen to light candles but I’m in dirty pajamas and I didn’t manage to get a shower in before sunset. I’m in bed and the house is quiet, I’ve spent most of Friday night dinner in my chair in the living room so I can at least be near the family during the Shabbat meal. I’m overtired and drained. Gaby is in the bed next to me, his book open, pretending to read. My heart is beating slowly and I feel sluggish. In careful tones, I tell him my fantasy.

The pig and the cow, the rows of orange trees, the dogs, Savta’s garden, the cherry tomatoes bursting on the vine, holding hands, hiking, my strong legs, the scent of sweat and earth, Grandchildren, fresh fish cooked in parchment paper, his smile, the sun, the laugh lines in the corner of his eyes, heat and warmth and love.

He’s silent.

“You don’t have anything to say?” I’m annoyed. I’ve outlined in detail my fantasy, my hopes for our future. Gaby remains silent.

“I’m injecting the dye in now,” says the technician. I feel something cold against my hand. “Are you okay? 10 more minutes and then we’re done.”

“Beseder,” I whisper against the white walls.

It’s Friday night and we’re back in bed, Gaby’s book rests upright on his chest and I wait for him to speak. I study him intensely, carefully. I notice the new wisps of grey hair that have darkened his temple, the worry lines that crease his forehead. He has lost weight, his face thinned and angular. It was a hard week for him, an even harder two and a half months. I hate myself for doing this to him, I yearn to take care of him again.

“The details in your future are lovely,” he finally says. “But for me, there’s only one thing that I need in my future. And that is you.”

The machine shudders a final time and hums to a stop. And with that final thought, the slab moves me out of the machine and back to my life.

 

 

 

 

 

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Home

Happy Erev Shabbat from my bed in Jerusalem! I’m home, thank g-d, after spending two days post round three of RCHOP resting at my parents apartment. It was an unexpected couple of days out of the house that was difficult on Gaby and the kids but unfortunately necessary to protect my weakened immune system.

I was very anxious going into treatment on Tuesday and even more nervous when we woke up and discovered that Gaby was under the weather. Fortunately, my mother-in-law was able to take me to Shaare Tzedek and my parents came really early to take the kids to school. Before I headed out to the hospital, I packed a “go” bag just in case Gaby felt worse and I couldn’t come back home. I was so hurried to pack and make it in time for my appointment that I forgot to pack another pair of pants, but did manage to pack enough meds and shots to get me through a couple of days!

My mother-in-law got me to the hospital on time and I was able to grab a bed this time, instead of one of the Lazy-Boy chairs set up in the treatment room. Since they give me a big dose of anti-histamines before starting the Rituximab, I usually fall asleep and figured being in a bed would be most comfortable. Nurit, the amazing head nurse in the hematology-oncology unit, drew my blood and then cleaned and steralized my PICC line. I went back to my bed, waited for the blood test results, and tried to hydrate as much as possible.

It takes about an hour for the results to come back so I davened and chatted with my mother-in-law and did a lot of deep breathing. Tuesdays on the ward are very busy and the beds started filling up really quickly. I was happy I grabbed the one all the way against the wall, next to a tiny window where I can spy on all of the hospital workers grabbing coffee and cigarette breaks while sitting at the tables set up right outside. Since I’m on the 6th floor, but facing the back of the hospital, I’m actually on ground level. I know, seems odd, but Shaare Tzedek is built into a mountain and there’s actually a ground level entrance behind the building to the 6th floor where you can access the beautiful new Children’s hospital.

There are a lot of volunteers who circle the floor and this week, a lovely reflexologist was going from bed to bed offering up foot rubs. At first, I thought to decline, but then I decided why not? And it was the most relaxing 15 minutes I’ve had in a long, long time. I hope she comes back for my next treatment!

I know my numbers are good for chemo when I hear them wheel in the IV pole while calling out my name. I’ll be honest, I let out a huge sigh of relief when Nurit showed up with the first part of treatment. She gave me some pills, hooked me up to the anti-histamines, and 25 minutes later I was out for the count.

It took seven hours to get all of the meds into me and I was at Shaare Tzedek from 8:00 am – 4:30 p.m. I woke up for good around 1:00ish when they switched my IV pole to the CHOP part of my treatment. A couple of minutes later, Dr. Ashkenazi came by to see me, which was really nice. I try to push my IV pole down the hall to his office but I was so wiped, I wasn’t able to get out of bed this week. During our consult, I mentioned that there was a lot of illness back at home and he recommended that I try to find someplace else to sleep until the family could get healthy.

So, off to my parents house I went for what extended into a two day stay while Gaby got some R&R back at home. It was hard to be away from everyone but it was also so helpful to have my parents take care of me while I rested.

I woke up at 3:00 a.m. Wednesday morning in a lot of pain; my stomach was hurting me and so were my fingers. The prednisone caused my fingers to swell and my rings were cutting off my circulation. I started to panic because I couldn’t take my anniversary band off my ring finger and it was red and throbbing. Fortunately, my parents were both already awake, and my Mom used good ol’ Palmolive and a lot of cold water to slowly pry my rings off my fingers. We put all my rings into a ziplock bag and then I just massaged my fingers until the redness went away. I had on and off stomach pains for the rest of Wednedsay but it was manageable, I just stuck to a really bland diet and drank a lot of water.

Thank g-d, by Thursday, I was already starting to feel much better. Mom took me out to run some errands on Derech Beit Lechem so I could get in a walk and some fresh air. I went to Gil, my favorite fruit and vegetable store, and bought some produce for the week. We went to Anise so I could pick up some more Matcha green tea for this Matcha Latte recipe I found online; I make it using homemade cashew milk since I’m allergic to almonds and I put in a tsp of honey since I’m off of sugar. It’s not bad and it makes me feel like I’m doing something nutritionally to fight the cancer!

When Gaby came to pick me up to bring me back home, it was wonderful. The kids were so happy to see me and it was great to be back in my bed and surrounded by my family. They give me the strength to keep on fighting.  I’m looking forward to P”G a restful Shabbat.

Thank you all for your tefillot and acts of chesed, your hafrashot challot and your delicious meals that continue to flow in to our home and are beyond appreciated.  May you all merit a long and healthy life.

Shabbat Shalom,

Lior Shira Batya bat Chaya Yehudit

 

 

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Cancer and Cannabis

IMG_4699

Happy Tuesday! I was finished by Noon at Shaare Tzedek today, so I thought I would take advantage of the time and update my blog. Thank g-d, I am feeling physically good and I’m in really good spirits.  We had a really nice Shabbat in Ashkelon and the change of scenery plus the warmer weather really just made a huge difference. We were sad when Shabbat ended because it meant leaving our little 25 hour escape from reality.

I’m sorry I haven’t been able to respond to every message and WhatsApp lately, I’ve been working a lot and with whatever energy I have left, trying to spend it on Gaby and the kids.

Physically, I’m thank g-d doing okay this week. I’ve been taking the Neupogen shots which are thank g-d working! Today my white blood cell count was up to 10,000 which is great and I have to do two more shots before my third round of R-CHOP next Tuesday. I made the mistake of drinking freshly squeezed OJ over shabbat and my gums got really swollen and I got sores in my mouth. Fortunately, my gums have gone back to normal by this morning and I made a mental note to avoid freshly squeezed OJ until chemo is finished. Aside from the pains I get from the Neupogen shots, and needing a lot more sleep than normal, I am B”H having a good week.

Mentally, well, that’s a different story.

Look, I’m fighting. I am, I’m fighting hard over here. But I haven’t had sugar since November 19, 2017. I’m also off of chocolate, dairy, white flour, alcohol, fried foods, spicy foods, and certain fruits and vegetables. I don’t hug my husband because I’m still in niddah and I basically don’t hug my kids because one of them is either coughing or complaining about something hurting them. I don’t touch anyone else because there’s always a risk of catching something.

There are days when I have to give myself two shots in the stomach, which is not pleasant. The Clexane burns like heck when it’s injected and because of the construction of the needle on the Neupogen, it’s really hard to get it to penetrate the skin below my belly button. I say a perek of tehilim every time I need to do a shot but it doesn’t always help. I have a PICC line that makes sleeping on my left side impossible and I’m afraid to lift any weights because the PICC line is jutting out of my left bicep. When the nurse (who is lovely and amazing and so, so nice) cleaned my PICC line this morning, she accidentally pulled on it and I’ve been in pain ever since.

This is what I look like in the morning when I need to wake up to make Aruchat Esser and breakfast. Gloves on my hands are not shown, but since Tani has been coughing, I’ve been wearing masks and gloves around him.

IMG_4692I’m not allowed to go into crowded spaces because of risk of infection, which means I haven’t been to a movie in two months. I need someone to come with me on a walk around my neighborhood since I can’t be alone, and I’ve gone from someone who hasn’t really thought much about being regular to obsessing about poop.

I’m bald.

On the nights when I’m able to fall asleep, I have nightmares that jolt me awake and leave me drenched in sweat. My anxiety levels are through the roof and I’m scared all the time. The first thing I think about when I wake up in the morning is that I have cancer, and the last thing I think about before I fall asleep at night is that I have cancer.

I’m still fighting. I’m still trying. I’m staying as positive as I possibly can be.

But lord, I just need SOMETHING to help me take the edge off.

I want some pot. I do. I want some medical marijuana to help me relax. I want some cannabis to help me with my cancer fears.

I want to laugh again. I want to hug my kids again and not be scared that I’ll catch something that will make me really sick. I want to go to a supermarket again and not have anxiety over touching a shopping cart or handing over my credit card at the register.

But, my amazing, incredible doctor doesn’t believe in medical marijuana. And I love and 100% trust my doctor. I believe he has his eye on the prize, and the prize is curing me of this horrible disease.  During today’s meeting, I mentioned that I had gone to see another doctor for a license for medical marijuana. Not to go into the whole story, although it really is quite the story, I didn’t end up with the license but I did end up with a third opinion. My amazing, incredible doctor listened to the whole story and then basically asked me to reconsider medical marijuana. He basically said that I really got this, that I can do this, and I can trust that I’m in the best hands possible.

He told me that when I walk out of my Tuesday appointments, I should basically try to forget that I have Diffuse Large B-Cell Lymphoma. I should go out. I should go dancing! I should go to work (I’m still working BTW), cook for my kids, and just get on with my life. I should find a support group or talk to other people who have cancer or are cancer survivors.

I so, so want to be this person he thinks I am! I want to be the person who walks out of a Tuesday appointment and forgets that I have cancer. I would love to hire a babysitter and go out to the movies! I haven’t been dancing in years but it would be nice to maybe go to a museum.

But if I can’t have cake or cookies. If I can’t have Crave or Ben & Jerry’s. If I can’t cuddle with my kids or my spouse. If I can’t run my fingers through my hair. If I can’t go to the movies or order an extra dirty Ketel-One martini at my favorite bar. If I can’t lift weights or work out. If I can’t put on mascara for fear that the weight of the make up will pull out my few remaining eye lashes.

If I can’t live life the way I used to live it, then I want a little bit of Mary Jane to make me not care about all the can’t.

And hopefully help me focus on all of the can’s and the blessings that I really do have in my life.

Please continue to daven for me: Lior Shira Batya bat Chaya Yehudit.

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Everest

Dostrovsky street is my Everest. It’s a very steep hill that connects Efrata street with Shalom Yehuda in my quaint little Jerusalem neighborhood, and named after award-winning scientist Israel Dostrovsky. Before we had a second car, and I used to pick the kids up and walk them home from school in Baka, I would always opt to walk up Ein Gedi street and make a right on to Efrata so I would avoid Dostrovsky.  My Dad dubbed it “cardiac hill” since your heart is pounding by the time you make it to the top.

On Monday this week, I didn’t have my follow up appointment with my bariatric surgeon. But it was a date that I had been looking forward to for months. We were supposed to review all of my pre-op tests and set a date for bariatric surgery, which I was expecting to take place some time in February. It was a hard appointment for me to give up, especially since I wanted to thank the surgeon for agreeing to do the surgery in the first place. So many people tried to convince me not to have the surgery, but I had said that if the top bariatric surgeon in Israel was willing to do it, I was going to go ahead. Thank g-d he agreed to do the surgery. If he hasn’t agreed to the surgery, I wouldn’t be where I am now.

Tuesday was my weekly appointment with Dr. Ashkenazi at Shaare Tzedek. I got my PICC line cleaned and my numbers drawn. My WBC’s were low, as expected, so I started again on the Neupogen shots. I still marvel at the science behind these shots. Literally, a syringe full of medicine makes my bones squeeze out white blood cells. I feel it working, as I woke up this morning with pain in my arms and just generally feeling unwell.

I’m also amazed by how physically weak I have grown since I started R-CHOP. I went from feeling like a strong person, to having difficulty walking from room to room. Seriously, walking from my bed to my chair in the living room leaves me winded. Before my cancer diagnosis, I was working out with heavy weights, using my TRX and thinking about working out with a trainer. Gaby and I ran/walked the Maccabiah Games 5K this summer and I got such a high from it, that I hired someone to teach me how to run. I told Gaby that I want to be a runner. My health and fitness goals included having surgery to lose weight, and with all the excess weight off of my knees, start a running program.

This is still my ultimate goal, I’m just taking a different route to get there.

So now, I have to figure out how to stay active even though it’s difficult. I’ve recruited friends and family to take me out for a walk at least once a day. And I make myself walk up Dostrovsky street, even though it’s really hard. I told myself that if I can manage to walk up Dostrovsky once a day, then I’ll be okay. I’ll physically make it through all the chemo and the cancer and anything else that this illness will throw at me. I just need to put one foot in front of the other and make it up this street.

Yesterday, my friend Tami came to take me out for my walk and I was feeling so great that we walked up Dostrovsky twice! We sat on a bench in the sun and caught up afterwards since twice up Dostrovsky is really my limit, and it was just so nice to sit and breathe. To not think about work deadlines or the pile of laundry that needs folding or the sink full of dishes that needed washing. It is so rare in my daily life to just sit on a bench from 1:00 – 2:00 p.m. and talk to a friend. I think we all need to figure out how to get these moments into our daily lives, because that social interaction literally carried me through the rest of my day.

This morning I was feeling run down from the shot, but the kids were up at 5:30 so I pulled myself out of bed. I made them Aruchat Esser, some morning shoko and warmed up cheese bourekas for breakfast. I was thankful they didn’t ask for eggs because I had no energy to start cooking. I was supposed to have acupuncture at 9:30 but my whole body ached so we rescheduled and I went back to bed. I slept until 12:30 and then my Dad came over to take me out for a walk. We decided to go to Beit Hanatziv since I wanted to buy some fresh spelt bread and fresh cashews so I can make cashew milk. I haven’t been to a store in a really long time and I felt a bit anxious walking in to the Roladin. There was a rack of breads but nothing to grab them – no tongs, no gloves, nothing. I have to be really careful about germs and handling food, so my Dad grabbed me a napkin and I put a loaf of bread into a bag. When I went up to the cashier to pay, I asked him if he could slice it but to put on gloves when he handled my bread. He laughed at me and I could tell he wanted to give me a hard time, but he did as requested. He must have thought that I was another crazy American who is annoying about germs.

We then went to the nut store which is literally my favorite store in this complex. I haven’t been in there in three months but it’s a very narrow store so I was really anxious. My Dad kinda gave me a little nudge and I walked in and asked the owner if he wouldn’t mind giving me fresh unsalted cashews from the box. I can’t eat from display cases that are out in the open. As he went to the back to get the cashews, the woman in front of me who had just finished paying and was distracted while walking out of the store, slammed into me on her way out. It wouldn’t have been a big deal except that she slammed right into my PICC line and she literally pushed me back. My Dad caught me so I didn’t fall over, but I let out a loud gasp. Interestingly enough, the woman actually came back into the store to see what happened. She asked me if she bumped into me and I was just so shocked. I responded “didn’t you feel it?” because she had hit me with such force! She said “no, she didn’t feel anything” and then she left. No apology. Nothing.

I think that’s the last time I go into a narrow store. Now these store owners know me well, I am a pretty good patron, so they had no problem asking me why I needed the nuts from the back. I told them that I have cancer and he looked so shocked! But he understood and assured me that if I ever wanted nuts or fruit, he would make sure to give me from the packages and not from the bins.

I was tired on the walk back home but it was important for me to get up Dostrovsky, and even though I had to concentrate on putting one foot in front of the other, I made it to the top.

No matter what your Everest is, I hope you make it to the top, no matter how long, or slow, or hard it might be to get there.  Just put one foot in front of the other, and you’ll make it.

Please continue to daven for me: Lior Shira Batya Bat Chaya Yehudit

 

 

 

 

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Shadows

It was Midnight the first time I came face to face with my new shadow. I had just finished working and was making my way to the light switch in the living room, when I noticed my shadow above our alarm box. It was jarring to see, a reflection of myself that I didn’t recognize. The round, nakedness of my bald head. The sudden protrusion of my ears. My hand lingered on the light switch and I moved my head slowly, from side to side, trying to understand this darker reflection of my new self. But the shadow doesn’t reveal the high cheekbones or the darker eyes, the paler skin or the prominent strawberry marks sprinkled across my hair line. It doesn’t reveal the ski line of shaved hair that remains, criss-crossed haphazardly across my skull, nor does it differentiate between skin that was once kissed by the sun from the alabaster skin covered by hair since birth. All I see on the wall is the proof of my illness.

I sighed and picked up my hoodie, shrouding my head in a semi-recognizable form, and switched off the light.

Before I write an update from last week, I wanted to write an update on my last blog post about Jewish Law and Cancer. The amazing Dr. Shana Strauch Schick , an incredible halachic resource and wonderful friend, has been helping us since my post went live and we have been making some much needed progress. I thank friends like Pesha Fischer, Chaya Bina-Katz, Yael Bitton and so many other women who reached out to me almost immediately with contacts and recommendations of incredibly learned women to speak to who can help us deal with this important challenge with Taharat Hamishpacha.

Thank g-d, Gaby is now able to help me with all physical tasks without it being an issue of Hilchot Niddah. We have the mekorot and I’m happy to share if anyone wants to see how we received that psak and the steps we have been taking to comply. We are still working out issues of Mikvah and emotional touching, but I’m really confident that we will get there. We have been in touch with Dr. Naomi Marmon Grumet from The Eden Center  and they are in the process of publishing an essential guide called ‘Toward Hope and Healing — A Guide to Breast Cancer and Mikveh.” I will be writing another blog post just about this project as I believe the information in this booklet – written in both Hebrew and English – should be in every single Mikvah throughout the World.  I believe all women touched by cancer – not just breast cancer – will find the information within extremely healing, informational and valuable. In the meantime, if you would like additional information about this project or to donate to help make the publication and dissemination a reality, please visit this link.

Tuesday was my second treatment at Shaare Tzedek and this time, I came better prepared. I made sure to eat very light that morning, sticking to lots of water and some plain eggs and whole grain bread. I skipped all fruits and vegetables. They start my treatment with two acamoli’s (tylenol) and a dose of anti-histamines and since I didn’t sleep much the night before, I basically passed out for the first couple of hours of treatment. I go through about 5 bags of medication in one treatment – the complete R-CHOP. It took an entire day and fortunately for me, I was asleep for majority of the treatment. I woke up when the Red Devil drip started and had one rice cake, just to have something in my stomach, and then dosed while Gaby kept me company and the once packed treatment room began to thin out. I will be writing a post just about the people I’ve met going through treatments because this journey has brought me in touch with some incredible people.

Thank g-d, I was put on a much stronger anti-nausea med and so there was no post-treatment vomiting. I was very pale and weak after treatment but was able to walk all the way to the car by myself and when I got home, I just popped into bed and rested. I was still really tired by Wednesday so no morning shift for me, but I spent a lot of time sleeping and resting and by Thursday morning, I was able to wake up with the kids.

I can’t even explain how essential it is for our kids to see me do mornings. Even if it means that I’m wearing gloves to pack their lunches, make them breakfast, do their hair, put on their shoes. If I’m in the kitchen at 6:00 a.m. to get Sivan ready to get on her van in the morning, and they see that I’m in charge just like I was two months ago before my diagnosis, the whole house just runs smoother.

Part of my post-chemo regiment is four days of Prednisone (steroids) and I have to say, they make me crazy. I hate steroids, they put me in a foul mood, they make me angry and depressed and miserable. By the fourth day on the drug, I’m really just totally unhappy and counting down the minutes until I can stop taking them. Unfortunately, since Tuesday is my treatment day, that means I’m really miserable on Shabbat. This Shabbat was even worse since Tani came home on Friday with strep. Which meant that I had to spend most of Shabbat in isolation because I am particularly vulnerable to illness and infection.

Shabbat spent isolated from your family is horrible. It’s just not pleasant and no one is happy when Mommy is stuck in her bedroom. As a Mother, I couldn’t even comfort my child when he was burning up with fever and crying out for me to give him a hug. That was very hard. The burden of running the family on Shabbat fell heavily on Gaby’s shoulders, and so he got very little rest. Thank g-d we had four amazing families bring us food for Shabbat (Adar, Herman, Benovitz and Sterngold) because there was just no way I would have been able to cook Shabbat this week.

At some point yesterday afternoon, while listening to the bickering and misery of my family in the living room, I decided I had enough! I opened the door and asked Yarden to dance for me in the hallway so I can watch her. She was so excited to dance and sing for me! She moved the laundry baskets in the bathroom and put on a show. It was 30 minutes of pure happiness. Sivan came to watch and I let her sit at the foot of my bed, while we let Tani bring a small chair to sit in all the way in the doorway and far away from me. Gaby joined a little while later and the mood started to pick up. The kids took turns putting on a little show for me in my bed and I enjoyed every. single.minute of it.

That’s when I realized that I’m going to have to use some out of the box thinking to push past the miserable moment, and make some precious memories.

I didn’t get much sleep last night but was able to get up at 6:00 a.m. to do mornings today. It was really wonderful for me to be back in charge and in the kitchen and even though I was tired, the hour I spend alone with Sivan in the morning is just so important. I love how I make their Aruchat Esser and lunches, I love thinking through what each child would like to eat, and try to put as much love into their little lunchboxes. I pack their book bags and fill water bottles, remember to put a fruit for the fruit bowl and sign any homework pages or permission slips. Unfortunately, once I’m done making everyone breakfast and getting them packed, I’m pretty tired and need to head back to bed. That means that Yarden and Tani don’t really get to see me in the drivers seat so I’m going to work on that a bit more. Even if that means that I curl up on the couch and keep them company until they walk out the door, I’m going to try to do that.

I’ve also noticed that I just don’t have the same stamina I had two months ago. Washing breakfast and lunch dishes, moving the wash into the dryer, and then hanging the wet wash to dry really takes a lot out of me these days. Three months ago, I was able to do that, run all my errands, workout for 30 minutes, put in a 10 hour work day, cook an entire meal, fold laundry, and then some!

But if there’s anything I’ve learned from this cancer is that I just need to take things day by day.

Please continue to keep me in your Tefilot: Lior Shira Batya Bat Chaya Yehudit

 

 

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Jewish law and cancer

When Aunt Flow knocked at my door this week, I’ll be honest I let out a gasp.

“No, no,” I said. “You’re not supposed to be coming anymore. I’m sorry, but I said goodbye to you last month.”

But Aunt Flow laughed and forced her way through, sat down on the couch and settled in for her monthly 5-7 day stay.

“I’m sorry,” I stammered. “But, I’m expecting Mrs. Menopause. In fact, I’m prepared for Mrs. Menopause. You are no longer welcome here!”

Aunt Flow ignored me and flipped her long, red hair. She was heavier than usual and angrier. She expects copious amounts of ice cream and Netflix rom-coms. Instead, she’s getting insomnia and cooked vegetables.

This brings me to the significant issue of Niddah, which I was not anticipating having during my cancer treatment. Having a PICC line permanently sewed into my arm that cannot be submerged makes a Mikvah visit impossible. Also, with a compromised immune system, the Mikvah is not the cleanest place for me to visit.  Besides the Mikvah, there’s even the bigger issue of being able to touch my husband.

Let’s put aside the emotional support that we both need from being able to hug. But, beyond that, I need physical help with some of my daily tasks.

Like showering, for example. Our amazing friends (the Baraks) bought me a PICC line cover that I can use in the shower. It has literally changed my life as I’m able to submerge with it on my arm and my PICC line stays dry. We got it on Thursday and I spent like 30 minutes in the shower on Friday. It literally gave me back some much needed independence and dignity. But I need Gaby to help me put it on; I’m not capable of doing it myself.

Next, I have to do a daily shot of Clexane (blood thinner) into my love handles. But being blessed a full-figured gal and having nursed three children plus gravity, well, let’s just say that in order for me to even see the area where I need to use the injection, my husband has to get to second base. There’s no other way, we have attempted during my pregnancies to rig up a couple of bras and it don’t work.

So, with those significant issues in mind, we turned to the Rabbis. We were then referred to a Rabbi (who shall remain nameless) who is known to be an authority on medical Halacha (Jewish law).

He had hours on Friday and so I sat in my bedroom with my cell phone and just hit redial. At the 45th call, it rang, and the Rabbi answered. I explained the entire situation: my cancer diagnosis, being in Niddah, my PICC line, the Mikvah, touching, etc.

The answer, in a nutshell, was as follows:

You’re shit outta luck.

Seriously, there is no way for me to go to the Mikvah with a PICC line. It’s impossible to submerge with it in my arm. The PICC line cover is a chatziza and cannot be used. However, if they do decide to switch out the PICC line and I am able to time it with a possible next cycle, then I can try to get to the Mikvah before a new PICC line is put in.

I’m pretty sure that’s not gonna happen. If they need to switch out the PICC line, they’re not going to let me go home first to dunk in the Mikvah and then come back for them to finish the procedure.

Plus, he agreed that the Mikvah is not a safe place for someone with a compromised immune system, and so I would need to time the Mikvah visit for when I’m not neutropenic.

OK, so now I not only need to time this Mikvah visit for when they might be switching out the PICC line and the next possible cycle, but also I have to make sure it’s during a time period in my treatment where I’m also not immunocompromised.

At this point, I started to plead my case regarding just general touching. What about emotional support? What about all the physical help I need? Like, we both need to be able to touch each other right now and for the next 4-6 months left of treatment.

Who’s gonna hold my BOOB?? I wanted to scream at the Rabbi.

Should I wake my 9 year old up at 9:30 p.m. and ask her to help me with my shots? Do you think their little fingers will be able to help put on the PICC line cover? Should I take my 4 year old along to my hospital appointments and have him hold me up after hours of chemo?

Well, to say I was disappointed with his response is an understatement. But, with doctors as with Rabbis, we are going to get a second opinion.

Shabbat was really nice. We received yummy food from four amazing families (Zeff, Leybovich, Betzaleli and Ben Yishai) and it really made my life so much easier. I was really tired today and while Gaby took the kids to shul, I got in a really long nap. Tani has been waking me up a lot during the night. I think he just wants to make sure I’m really here, he doesn’t really need my help.

Our next door neighbors knocked on our door right before Havdalah and invited us in for pancakes. The kids really wanted to go so we told them that they would come over after we said Havdalah and they put on shoes. When we closed the door, Sivan said to me “oooh, I know why people are inviting us and being so nice! It’s because you’re sick with cancer!”

Out of the mouths of babes.

The kids were thrilled to go and had a great time making pancakes and playing games. Gaby and I were able to slowly put away Shabbat, wash some dishes and generally clean up.

I’m counting down to Tuesday and just praying that my numbers will be good enough to have the second RCHOP on Tuesday morning. I also need to make sure I stay healthy so I can get the second treatment. And, if I can avoid vomiting for 6 hours posts chemo, that would be the perfect trifecta.

Thanks for all your prayers and good deeds! Please continue to daven for me: Lior Shira Batya Bat Chaya Yehudit.

May it be a Shavuah Tov!

11:30 p.m. Update: Thanks to the folks who read this post and have put me in touch with someone who is helping us! 

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Weebles Wobble but they don’t fall down

I’m a 70’s baby and Weebles were part of my childhood, so much so, that the slogan is still in my head. Weebles Wobble but they don’t fall down. That’s basically how I feel these days in a nutshell. I’m wobbling but I’m still standing.

Tuesdays just don’t seem to be going my way these days. What should have been a routine appointment yesterday, turned into something entirely unexpected. My friend Simone took me to my appointment and when she picked me up, I was eating breakfast and in good spirits. I had packed snacks for the day: an apple, some walnuts, a couple of packages of nori. I was so confident that we were going to be in and out of the appointment, that I had booked an appointment at Zichron Menachem to donate my hair.

Zichron Menachem is a wonderful organization that is known for their hair donation/wigs for cancer patients. But they do a lot more for people with cancer. They also have a program for children who have a parent going through cancer. They have Chugim (after school activities) and lots of other support. I was supposed to go, donate the hair I cut off right after my first RCHOP treatment, and sign the kids up for some of the Chugim.

But you know the saying: Man plans and G-d laughs.

We got to the hematology day clinic and signed in around 8:45 a.m. My appointment to meet with Dr. Ashkenazi was scheduled for 9:00 but I knew it wouldn’t happen that early. First I needed to have my blood drawn and the results take an hour. We waited patiently in the waiting room and caught up, and then it was my turn to go see the nurses.

Because of the PICC line, the nurses have to draw my blood. They also, once a week, need to disinfect and clean the line. They flush it with heparin to make sure no clots form in the line. Since it has been a week plus one day from when my PICC line was put in, I needed the “sticker” changed. That’s what the radiologist had told me when he put in the PICC line. He mentioned that he wasn’t using stitches to keep the PICC line in place and that I would need to have a nurse with Meuchedet (my health insurance provider) replace the sticker once a week. Since I’m not a radiologist and I have no idea what that means, I just took the instruction and said okay.

I asked the head nurse at the day clinic, who was in charge of my care yesterday, if she would be able to change this sticker. And she was stumped. She had never seen this particular bandage before and so she tried to get the radiologist on the phone. He was in the middle of a procedure so she spoke to one of the nurses in the department. The nurse told her to move forward and change the bandage.

So she started to remove the bandage, which was really stuck on to my skin and hurt a big. When she finally managed to get it all off, the PICC line began to fall out. So, there was some mild panic and she quickly cleaned it off, which burned like hell since it’s an open wound, and put two clear stickers on my arm to hold it in place. But the PICC line consists of two tube like things that stick out of my upper arm and the weight of these tubes were pulling out the PICC line, and so I started having another blood pressure moment. I got dizzy and nauseous and since I was right next to a bed, they got me up on it and brought me some water to drink. At this point, I asked if they could get Simone to join me, because I didn’t want to be alone. The nurses left to try to figure out what to do about my PICC line.

While I was resting, the dietician we had been waiting to speak to joined us and she was quite the character. Our meeting wasn’t very eventful, although I did get some rudimentary information about what to do if I’m ever possibly neutropenic.  Truth be told, I was so preoccupied with this PICC line issue, that I didn’t really pay too much attention.

We were then told that Dr. Ashkenazi was out at a meeting until 1:00 p.m. so we thought we would jail break and go across the street to get some lunch. Right when we were about to gather up our stuff, I got called in to see Dr. Ashkenazi. The nurses simultaneously managed to track down the Radiologist who was shocked to learn that I was a cancer patient and OF COURSE my PICC line needs to be stitched in place. He told them to have me return to the radiology department where he would complete the procedure and stitch me up.

At this point, I SMSed Gaby and told him he needed to get over to Shaare Tzedek hospital. As amazing as Simone is, I couldn’t put her through whatever might happen to me after the procedure. We went in to see Dr. Ashkenazi and we were laughing and joking. When I sat down, Dr. Ashkenazi told me that what they thought might happen with my blood count did in fact happen and my white blood cells were now at 150. They were 5,000 the week before so now I am officially immunocompromised. This means I need to start taking shots of something called Neupogen in my abdomen once a day for four days. This is in addition to the daily shot of Clexane that I take in my stomach once a day.

My first thought was thank g-d I have a big fat gut, since these shots all have to be done subcutaneously. Basically, I need to pitch some fat and then give myself the shot. It’s not easy but I’m really used to it by now, so I was able to give myself the first injection at the day clinic. But there are some significant restrictions given my new situation and that includes being very careful about food, only eating cooked food and fruits that have a very heavy peel. I have to stay far away from people who are sick or might be sick, since I’m more susceptible to infection. Dr. Ashkenazi also gave me a prescription for an antibiotic, in case I develop a fever.

Right when our appointment ended, Gaby showed up and we sat a sad goodbye to Simone. We confirmed my appointment for RCHOP next Tuesday and then went downstairs to deal with the PICC line.

Fortunately, the Radiologist didn’t make me wait long, but it was very painful. The alcohol burned something terrible until the local started working and the whole thing took 20 minutes, but it was very annoying. I was really unhappy about the mess up and we went home tired and aggravated.

I had to keep my distance from the kids so I basically hid in my room in my PJ’s. My hair has really started falling out in earnest and my white sheets are now full of dark brown strands of hair. When they tell you that Chemo will make your hair fall out, they don’t tell you that your hair and head will hurt a ton until the hair is gone.

My scalp just hurts and until I lose the rest of my hair, there’s not much I can do about it. I think I’m going to just shave it all off on Friday so that I can get some relief.

They also don’t tell you the side effects of the Neupogen shot, although she did give me a handy pamphlet so I could see where to actually give myself the injections. The pain in my lower back woke me up at 3:00 a.m. this morning and I couldn’t get comfortable. My PICC line area was throbbing and I started looking online to figure out what was going on. I’ve since confirmed with my doctor that this pain is a normal side effect of the Neupogen and I just have to grin and bear it.

So, I went from feeling really, really good on Tuesday to feeling really, really lousy on Wednesday. And next Tuesday is RCHOP day, which means 10 days of feeling gross post-chemo.

I guess I was just hoping for a few more days of feeling good before getting knocked down again.

This morning, when Gaby left the house with the kids, I put on this song and had myself a little tired, pity cry. Then I got up, made the bed, got dressed, and started my day.

Thanks for all your message and tefillot. Please keep davening for a refuah for Lior Shira Batya Bat Chaya Yehudit.

 

 

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Food

I spent a good part of this Shabbat thinking about all the things I want to write down, and then I spent about an hour tonight watching food videos from Tasty, Delish, Buzzfeed, Munchies, you get the picture. I love all those food videos but since I’m off of dairy, alcohol, red meat, sugar, white flour and just about anything that looks or tastes fattening, watching delicious food videos can feel a little like torture.

Look, I don’t have a good relationship with food. That’s one of the things that started me down this road to begin with. After years and years of fighting to be thin, I wanted to just remove the physical ability to overeat, so I could lose weight and lead a healthier lifestyle.

But truth be told, I love food. I just do. I have spent years and years fighting against it, because of the stigma about fat girls and food, but I love everything about food. I’m obsessed with food knowledge, I love to read about new foods, cooking techniques, innovations, etc. When given a night off, I would rather watch a cooking show then any other type of genre. I like experimenting in my kitchen and have been blessed with a partner who is gung-ho and loves to try new things too. A shared appreciation of food is one of the things we have in common. My Instagram feed is just one amazing Chef after another and for some reason, I’m really keyed into the food scene of Philadelphia. Go figure! I mutter about Wylie Dufresne when making eggs in the morning, compare any seafood dish to the Voltaggio brothers, and dream about making kosher Pho.

I love entertaining for Shabbat because I literally spend days thinking about the menu. Vegan? Gluten-free? Paleo? Nut allergy? Come on down! The more complicated the better; I view it as a personal challenge. Gaby will often find me surrounded by cookbooks and searching through Pinterest for the perfect recipe for a meal. And when I pull off just the right balance of dishes, I feel tremendous pride and happiness.

Dieting for me is torture, and not because I am unable to restrict myself, but in order to lose weight my meal choices are uninspired. I don’t enjoy the restriction, I’m more of a load my plate up type of girl, so portion control can be challenging. When I need to lose weight, my food choices get very limited. I know it doesn’t always have to be this way, but for me to really be successful, I end up eating the same things day in and day out until I reach a goal weight. Except I haven’t reached my goal weight since college so that says something about any success I’ve had with diets.

Since Chemo a couple of weeks ago, my appetite has all but disappeared. I’ve been existing on very little and have lost seven kilos since my diagnosis on November 15th. The weight loss is good since I can stand to lose a few pounds, but I also need to keep my strength up. Then Friday morning, everything just changed. I woke up at 6:00 and got Sivan ready for school. I made the kids Aruchat Esser and ran to get dressed, I took Sivan to the van and a cab pulled up three minutes later. I had a 7:30 a.m. acupuncture appointment with Dr. Martine Toledano, who heads the Integrative and Complimentary Medicine department at Hadassah.

Dr. Toledano was amazing. She told me that she was not there to treat my cancer, that was going to be taken care of by my doctor at Shaare Tzedek. She was going to treat “Shira.” She was going to help me sleep better at night, stop with the night sweats, reduce my anxiety, help me lose weight, bring strength to my body. I haven’t told her about my issues with smell and taste but I’m sure she knew that these were all side effects of the Chemo. She did a full treatment and I walked out of there feeling tired but uplifted, and I had energy to burn. I was also absolutely starving. Gaby drove to pick up Challah for Shabbat, which we ended up not needing, and I asked him to pick up some whole grain bread. When he got back into the car, I grabbed the bag and literally devoured two piece. I hadn’t felt so hungry in days! Next, we drove to Emek Refaim to run some errands. I put my mask on and we ventured out into the World. This was my first post-treatment trip to Emek Refaim and with my mask on, most people just parted when they saw me coming. I didn’t mind it since I’m very aware of my PICC line and just don’t want people to bump into my left arm. We parked somewhere in the Greek Colony and walked a couple of blocks to get light bulbs, then worked our way backwards towards Super Moshava, Steimatzky and Bagel Cafe. I was still starving and so I ordered a whole wheat bagel with light tuna. Gaby didn’t think I would be able to eat it all but did I surprise him!

The walk around the neighborhood did wonders from my mood but I was also tired. I was happy when we finished up our errands and we got back to the car. I spent most of the rest of Friday resting and working, although I summoned the energy to clean off the dining room table and set it for Shabbat. Gaby brought the kids home from school and Yarden walked in absolutely miserable, burning up with a fever. We got her into the shower, gave her some meds and put her to bed. Gaby was also starting to feel lousy and I told him to try to rest, but you know how it is before Shabbat, there’s a million things to do! He managed to get the kids showered and into PJ’s and then helped me take a shower, before he was able to just crash.

And then the people started to come. Four amazing families offered to cook Shabbat for us through a meal train set up by our friends. We were all just blown away by what was brought for us to eat over Shabbat.

As parents, we don’t always see the teachable moments in life. On Friday, we were shown such tremendous acts of Chesed and our children were here to witness and appreciate true kindness. The Brendler family dropped food off first and Sivan was in gan with their son in Gan Chova last year and rides the Baka van with their daughter, so she recognized them and started to get excited. Chicken soup and zucchini bread, cookies and petitime; they brought us a ton of delicious food! Next, Tani’s friend Yishai’s Dad dropped off gazpacho and salatim and a cake that was so big we didn’t know where to put it! At this point, we had more than enough food to last us the entire Shabbat, and two more families were still coming to drop off food! Mia’s parents from Tani’s gan came next and we couldn’t believe the thoughtfulness. Freshly baked Challot and fresh salad, shnitzel and sides. At this point, there was no more room in our refrigerator or on our plata and we knew the Barak family was still to come. And come they did, with a giant cardboard box that was bursting with yummy food.  Chicken and roasted vegetables, a pumpkin cake and a chocolate loaf and cucumber salad and a little chocolate treat from their recent travels.

We were so overwhelmed! Sivan in particular asked a lot of questions. She said, “Mommy, because you have cancer look at what all of these people are doing for us!  Look how many people care about us, they cooked and made us so much delicious food! See Mommy, even nice things can happen because you have cancer.”

That last bit just struck me for a minute. Because, really, I haven’t been able to think of anything good happening because I have cancer.  I’ve been trying to be upbeat and positive, but I have yet to see cancer as “a good thing.”

But she was absolutely right. Just look at all of the kindness and chesed people have shown us because I have cancer. We are so fortunate to be surrounded by such incredible people. It’s moments like these that makes the challenges of having cancer and going through treatment just a little bit easier.

Shavua Tov

Lior Shira Batya Bat Chaya Yehudit

 

 

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Fresh Air

Please g-d, when this is all behind me, I want to go to the Beresheet Hotel and Spa for two days and just sit outside and breathe.  I don’t want to do anything else but be in an unpolluted environment with fresh, crisp air and just breathe in and out. Right now, that is one of the things I’m striving towards.

I’m very conscious about air these days. Mostly because I walk around in public with a mask, and it’s very hard to breathe with a mask over your face. I’ve never realized just how much I’ve taken fresh air for granted. Take a minute for me and go outside, no matter how cold is might be, and just close your eyes and breathe deep. Feel your lungs expand with clean air and enjoy a little break from whatever you’re doing right now.

It has been five days since my last blog post, I honestly just haven’t had much energy or time to write. Today, thank g-d, I’m in a better place although yesterday was one of the hardest I’ve had in this journey so far.

Yesterday morning, I was scheduled to get a PICC line installed at 9:30 a.m. at Shaare Tzedek hospital. The PICC line is essential as it will eliminate the need to always find a vein every time I need blood tests or to receive treatments. They do no sedate you for a PICC line procedure and you need to be fasting. Unfortunately, one of the procedures before mine turned complicated and my 9:30 a.m. go time didn’t happen until 1:00 p.m. At that point, I was dehydrated and very hungry, not to mention pretty anxious. I was in very good hands with the radiology department at SZ and at one point there were at least four doctors, technicians and nurses in the room with me. They were beyond respectful and talked me through the entire procedure. I was in my mask because I didn’t know my blood count and I wanted to minimize exposure to illness. If you’re in Israel right now, the ER’s are packed with sick people, and I’m particularly vulnerable since CHEMO is essentially wiping out my entire system.

There is a lot of sterilization that goes on with a PICC line, I was washed with soap and water, then alcohol, then more alcohol, and then covered almost completely with a sterile drape. I kept saying Tehilim and just focused on my breathing, I hummed the Rabbi Nachmun Remix song and tried to just stay calm. Almost halfway through the procedure, I started to feel ill. I was nauseous and my blood pressure just bottomed out. There’s a medical term for what happened but I don’t remember it right now, I just remember them quickly elevating my feet and the nurse wetting my face and mouth. He lifted the mask off my face so I could breathe and talked to me so I could stay conscious. When they finally wheeled me back to the room where Gaby was waiting, I was out of it but feeling a bit better. The nurse put a warm towel behind my neck which helped. Gaby told me that the doctor told him I had fainted during the procedure and so I had to stay an extra 45 minutes in recovery before I could leave.

They brought me food and I had a really hard time finding something to eat. I’m off of sugar and I don’t eat dairy, and the box contained cold eggs, some cut vegetables, lots of dairy and a white roll. The Chemo has given me heartburn so I knew the white roll would be painful, but they insisted that I eat so I had the roll with a tiny shmear of some white cheese and a couple of cups of hot water. My insides were on fire from the heartburn so we called my primary care physician and she left me a script for Nexium. I was feeling better so they let us go at 2:30 and we drove towards the Medical Center.

At some point during the drive, I started not feeling well again. I broke into a sweat, there was tremendous pain in my chest, and I thought I was going to vomit. Gaby sped towards help and I kept my eyes closed and just started praying. The doctor at the Medical Center told him to take me back to the ER ASAP and so Gaby jumped behind the wheel and drove faster than ever. I was in a very, very bad place. I couldn’t open my eyes and I was drenched. Gaby got me back to SZ in record time and was able to pull up at the ER where a security guard got him a wheelchair for me. Gaby literally ran me back to the radiology department and I’ve never seen people move so fast in my life. I was so out of it but I remember people pulling on my clothing to get me onto a bed and the amazing nurse who was with me in the procedure hooked me up to monitors and just talked to me and told me to breathe as my blood pressure stabilized. But they couldn’t keep me in that department since I was discharged and they wanted me to go to the regular ER to be monitored and get some fluids.

When they pushed my bed into the ER and I saw all of the sick people in beds just literally lining the halls, I begged Gaby to just get me out of there. The radiology nurse told me that I needed to just elevate my feet, drink fluids and rest, and my blood pressure would stabilize. We spoke to an ER nurse who understood my fear of catching something and she basically said it was against her medical opinion for me to leave but she understood it. So, Gaby helped me to the car, put the front seat all the way down, and got me home and into bed as quickly as he could.

It took three hours for me to finally feel a little better last night but during that time, I realized just how little I have control over this illness. Who would have thought that a PICC line would result in low blood pressure? We had to scramble to find people to help with the kids and thank g-d my mother in law was able to pick the kids up from camp and play dates. I realized that it was time to just ask for the help so, so many people have been offering.

I am so blessed to have a wonderful network of family and friends who literally jumped to help. Within an hour, there was a meal train set up, offers for babysitting help and pick up help, and countless of messages of encouragement. We’ve been keeping a gratitude list and it keeps on growing. I have no idea how I will ever be able to repay all of the people helping us right now. Just know that thinking about you all brings me to tears. Thank you all, you know who you are.

I stayed in my room last night and rested and stayed away from the kids since Sivan was feeling a little under the weather. While we were at Shaare Tzedek, Sivan was at the doctor making sure she didn’t have strep. So, it was shocking when Tani started vomiting at 10:00 p.m. We discovered that he was burning up with a fever as well. We discussed whether or not I needed to leave the house and decided as long as Gaby took care of him and he stayed away from me, I should be okay. We were up with him almost an entire night; two more bouts of vomiting before the diarrhea started early this morning. He had to stay home and more help had to be called in since Gaby had an important meeting.

At 7:30 a.m. this morning, my mother-in-law picked me up and took me back to Shaare Tzedek for my weekly appointment with Dr. Ashkenazi. They drew blood from my PICC line and we waited for the results and our meeting. What I like most about Dr. Ashkenazi is that he listens to me, patiently. He let me go through all of my questions and answered honestly and thoroughly. While we were there, I got the results from the bone marrow biopsy. Thank g-d, there is no indication of the cancer within the bone marrow. That was AMAZING news. I’m still trying to let that sink in because it is wonderful. My blood count was also thank g-d really in a good place so we moved forward with scheduling my next treatment date. I have to go back next week for a repeat blood test and meeting with Dr. Ashkenazi. It looks like Tuesdays will most likely be my Shaare Tzedek days, so I need to start prepping for that as well. I didn’t bring anything to keep myself company and that just made me anxious. I’m going to need to stock pile books, magazines and fun podcasts for next week!

That’s all the update I have in me today. I’m sad it’s the last night of Chanukah but I’ve been told if you sit next to the candles tonight and pray for whatever you need – in whatever language is comfortable to you – you have the ability to alter the path sealed on Yom Kippur. I’m waiting for Gaby to get the kids ready for bed so I can just sit by the light of the Chanukiah and daven for the strength to get through treatment and for ultimately a clean bill of health.

Chodesh Tov and Chanukah Sameach from Jerusalem

Lior Shira Batya Bat Chaya Yehudit

 

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