Cancer and Cannabis

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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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Post Treatment

Day two post first treatment and well, I guess I’m not the Super Woman I thought I was.

On Tuesday, I strode into Shaare Tzedek’s hematology department all fight. You know? Like, let’s just get this started already so I can kick this cancer and move on with the rest of my life. They took my blood pressure and weight and then I moved on to get the hemlock put into my arm. Fortunately, I had been drinking non-stop all morning so he had no problem finding a vein. On Monday, I’m going in to get a PICC line which will be in place permanently until after my treatment is completed.

We then met with Dr. Ashkenazi where he explained exactly what I was about to get coursing through my veins. It’s a drug combo called R-CHOP. The R stands for Rituximab and it’s not a Chemo drug but rather it’s a targeted biological therapy. Dr. Ashkenazi explained it in brilliant laymen’s terms. The Rituximab acts like a heat seeking missile, systematically searching out the cancer cells and hopefully killing it. So, that’s the one punch. The two punch is the CHOP which is chemotherapy drugs. That’s like following up by dropping a nuclear bomb that kills all the cancer but everything else as well.

I was like, hook a sister up! Let’s do this! So, we grabbed a bed in the room since first treatments can last an entire day. They take a long time with the Rituximab because you could develop an allergic reaction. They loaded me up with a sedative and some anti-allergy drugs like Benadryl and started giving me low-doses of the Rituximab. This was me hooked up with the first  bags:

IMG_4377

I’ve got my siddur and my Grandmother’s ring and I was ready to get treatment going. About an hour in, I started feeling really sleepy. It was good I had the bed. Nechama, the nurse we had that day was amazing. She was really thorough and kind and took her time explaining everything she was doing. The social worker also came to meet with us to explain a lot about my new status, our rights, and what we can claim from Bituach Leumi (National Insurance) that should help us during the course of my treatment. I was struggling to keep my eyes open while she was talking to us and then I just fell asleep. I was out for about 2 hours. When I woke up, we were almost finished with the Rituximab. Originally, Dr. Ashkenazi thought I would need to come back on Wednesday to get the Chemo drugs but since I was tolerating the Rituximab, I told them not to wait.

The nurse came back and said we were now finished with the first course (in Hebrew, using the terminology for food). So I laughed and asked her what was for dessert. Well, that got a chuckle out of her, but then she returned with 4 bags of the chemo drugs. The H of the CHOP is bright red and I believe it is also sometimes called the Red Devil. I’m not sure where I read that but I read it somewhere. Before she started the CHEMO drugs, I asked Gaby to get me something to eat. I thought it would be a good idea to put something into my stomach so I wouldn’t feel queasy. He returned with some barley soup and majadera. In hindsight, not the smartest move on my part, but what the heck did I know?

We were there from 8:00 – 3:30 p.m. They were all shocked I managed to get a complete treatment into me in the first day. We then met with Dr. Ashkenazi who prescribed prednisone meds and some Zofran (anti-nausea drug) and sent us home. I have to come back next week for a PICC line and then to meet with him again to check my red and white blood cell counts. If these counts go too low they will have to give me a shot to get them up to help fight possible infection.

I hoisted my heavy knapsack on my back and insisted on walking to the car. I felt good! They had given me anti-nausea meds before starting the chemo and I just wanted to move and get out of the hospital. I put on a mask before leaving the ward and we picked up the girls on our way home. They were really scared of the mask but we explained it to them and I showed them some of the pictures we took during treatment so they could see what I had been doing all morning. I think they felt better once they saw the pictures.

When we got home, I insisted on going on the treadmill for a 20 minute walk. Again, I wanted to just move my body and I was feeling good! I wiped the treadmill down with alcohol wipes and went for a 20 minute walk. I had set up the Chanukiah’s for lighting the night before and we lit candles when I was finished. I decided it would be nice if I made myself a healthy dinner: some fresh cod, quinoa and steamed broccoli.

And then the first wave of nausea hit me, hard. I abandoned all dinner plans and went to lie down. Dr. Ashkenazi told me to take the Zofran at night but didn’t give me a specific time and it was only 5:00 so I didn’t know if I should take it. We went back and forth contemplating and then finally it got so bad that I took the Zofran.

Gaby left the house with the kids to go to his family’s Chanukah party and I just spent 3 1/2 hours puking my guts out. It was horrible. I had terrible stomach cramps and diarrhea, it was like that horrible scene from Bridemaids. During the Chanukah party, where there was a Minyan of 10 men, they added a new first name to my name.

Lior Shira Batya Bat Chaya Yehudit

At first, I was hesitant about adding a name since my perception was that this is something you do as a last resort. But my parents Rabbi at YIKGH (Rabbi Yoel Schonfeld) told my Dad that you add a new name upon diagnosis. I consulted with my Rabbi (Rabbi Zave Rudman) and he agreed with Rabbi Schonfeld, and then I did a little research.

Rav Yitzchak said: Four things tear up the decree against a person, and these are them: Tzedaka (charity); crying out (in prayer); changing one’s name; changing one’s deeds, and some say even changing one’s residence” (Talmud, Rosh Hashanah 16b). As a precedent, the Talmud points out that our Matriarch Sarah was destined to be childless until G-d changed her name (in Genesis 17).

From here, the Rema teaches that it is proper to change the name of a very sick person, to tear up the decree against them (Shulchan Aruch, Yoreh Deah 335:10).

OK, so that convinced me and we started thinking about new names. You’re supposed to take on name that mean life, healing, or blessings. But none of the eligible names resonated with me. And then we started talking about timing – my first treatment coinciding with the start of Chanukah. The significance of light and how where there is light, there is life.

Lior – “Light for me”

I started crying when we talked about the name so we decided that was the one.

Rav Rudman sent us the tehillim and “ceremony” that needed to be done to add the name and while it’s preferable for the sick person to be in the room while this was happening, I was too busy being all Exorcist into a bucket.

Now we pray that my new name will change my Mazal and help me beat this terrible disease!!

Gaby arrived home at 9:00 and I was just a mess, it frightened the kids but Gaby explained to them that we were expecting this and it will (please g-d) pass! At this point, I was really in a state and Gaby tried to figure out how to help. We called around to some of the doctors on call and they agreed that I must have thrown up the Zofran so I took another pill. I literally kept my mouth closed for 40 minutes to make sure the Zofran “took” and then another bought of violent vomiting started. I was so spent and scared, now I was worried about dehydration. We called my mother in law to come take me back to the hospital, it was already 11:30 and I had been vomiting for close to five hours. And then, just like that, I felt a wave of relief. We called my mother in law back and told her not to come, I was feeling like it had passed and I was ready to try to sleep. Lying down was out because I just felt too queasy and so I slept fitfully sitting up.

I sat up at 5:30 am with a start. You remember that feeling as a kid when you lost a tooth and put it under your pillow for the Tooth Fairy? You couldn’t wait to put your hand underneath the pillow to find whatever was left in the tooth’s place. Well, that was my feeling except I was convinced I was going to turn around and see my ponytail just lying there. It was frightening and so I was relieved that my hair was still attached to my head. At 6:00 I took another Zofran and then slowly got out of bed to get morning going. I was able to make Aruchat Esser, help the kids get dressed, pack school bags and rummage through our clean sock bag to find a pair for each kid. My stomach was still hurting me a bit but it wasn’t too bad so I pushed through. When the family left, I curled up in my chair and just got to work. I was able to make some eggs and steamed spinach and some lemon ginger tea. I was happy to be able to keep that down. I started on the regimen of Prednisone pills and felt queasy but okay.

The day progressed and the nausea was just gnawing at me. It reminded me of my first trimester for all four pregnancies. I had terrible nausea for the first 14 weeks but you just suck it up and deal with it because BABIES!! That’s what you get at the end, you get to have your babies. So, even though I’m still feeling gross and queasy today, I’m looking at this like my pregnancies. I’m doing this for my BABIES only they’re 4, 6 1/2 and 9 and I’m going to get through all of the nasty side effects and the rigors of treatment so I get to continue to raise and be here for my babies (and of course the love of my life, Gaby).

I was feeling a little down this morning so I’ve been blasting some music to keep my spirits up. I’ve been listening to a lot of Imagine Dragons lately, upbeat music really helps.

Thank you all for your messages, your encouragement and your tefilot. It’s what’s keeping me going.

Chag Urim Sameach! May this Chanukah bring us tremendous light and life.

Lior Shira Batya bat Chaya Yehudit

 

 

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Treatment

T’was the day before Chemo, and all through the house…

My days and weeks just seem to blur together, our sense of time no longer what it used to be. We make life changing decisions hourly these days, doing our best to make the most informed decisions possible.

I’ve decided to stay at Shaare Tzedek for my treatment, under the direction of Dr. Ashkenazi. This was not a simple or easy decision to make but one that I am very confident and comfortable with.

Medically, we are still waiting on the bone marrow biopsy report but it will not delay the start of treatment. Tomorrow please g-d, at 9:00 a.m. Israel time, I will start on a 4-6 month treatment plan that will hopefully cure me of Stage IVA Diffuse Large B-Cell Lymphoma.

I don’t think I can ever truly mentally prepare myself for Chemo, but I am spending as much time and energy as possible to physically prepare myself and my family.  There were specific moments I wanted to be here for: Tani’s Chanukah party on Friday (he spent the performance sitting on either my lap or his Nana’s lap), Sivan’s Chanukah party last night (she spent half of the performance sitting on my lap, but we managed to cajole her into joining her classmates and by the end of the party, she was having a fabulous time), and Yarden’s Asifat Horim (7 minutes of pure nachas shepping when we heard all of the wonderful progress she has been making this year).  I am just so, so happy that I was able to be there for each of those occasions.

From a work responsibility perspective, tonight is my 2018 social media program reveal for one of my big brand clients. I’ve been working on the deck for weeks and this meeting with determine an entire year’s social media strategy and advertising spend. It’s my Super Bowl so I need to bring my A-game. I have another one scheduled for Thursday for a different big brand client and I’m just praying that I will be able to participate and lead the discussion. I’m spending the better part of today preparing for that meeting, so that at least all the information will be ready and I can have another person on my team present if I’m just not feeling up to it.

We are still looking for someone consistent to help us with the kids. I still need someone to pick them up from school three days a week, and feed them dinner, help with homework, and just be an extra pair of hands around the house. Mornings will probably be difficult, unless I’m able to drag myself out of bed and make Aruchat Esser and breakfast. I’m really hoping that I’ll have the strength and energy to continue to do all the things I’ve been doing so far – but I also have to plan and prepare for the likelihood that I just won’t have the same energy.

So what does one do to mentally prepare for Chemo? I’ve been trying not to focus too much on the side effects but it’s difficult. Dr. Ashkenazi warned us that I won’t be able to have more children. I also spoke to Dr. Nili Yanai this morning and she confirmed that I probably won’t have any more children, and that I also might go into early menopause. Now, we’ve pretty much decided we were done having children and we are so happy and blessed with our three kids, but it’s one thing to decide not to have any more kids and it’s another thing to have that ability taken away from you. Early menopause means lots of other unpleasant physical changes like night sweats and moodiness and hot flashes and weight gain, among others. I’ll need early hormonal intervention to help protect bone density, etc. But on the flip side, I think about the diva cup still shrink wrapped in the box in the cabinet underneath my sink that I have been petrified to use, and I feel a tiny bit relieved.

And then there’s my hair. I have been at war with my hair since puberty. I have been blessed with curly, frizzy, Jewfro hair. I have never had the ability to just wash and go and have it look nice. I’ve spent years and thousands and thousands of dollars chemically dying my hair. I have been blonde, brunette, Goth-black, and auburn; I’ve had golden highlights and face framing highlights and brown low-lights and after Sivan’s birth, I put in purple highlights that cost a month’s paycheck and washed out after four weeks. I’ve chemically straightened my hair using the Brazilian Keratin treatment that didn’t manage to take, but burned a big hole in my pocketbook. And the various hairstyles I’ve rocked over the ages could be a Wikipedia entry all of its own. I’ve had asymmetrical hair, short hair with layers, bangs and a bob, face framing layers, straight bangs with curls, long springy corkscrew curls that took bottles of mousse to create, and the famous “I just don’t have time for this Mommy hair” cut.  I’ve been growing out my highlights for a while now and fortunately ombre hair is a hot trend these days, so I look trendy even though I’ve just been too lazy to deal with it. I figured I would just grow out these highlights, get back to my base color, and go from there. But at the recommendation of Shiko, our hairstylist, I’m going to be going all GI Jane on Friday. Earlier if my hair starts falling out in clumps after Tuesday/Wednesday’s treatment. He said it would be less traumatic for me to have it buzzed off then to have it all fall out. I’m not actually scared about my hair falling out, I’m petrified of seeing my bald head, of seeing a naked face. What will that do to my features? Will my face look puffier? Will my nose look pointier? Will I look like a bald alien with bags under my eyes and freckles dancing across my cheekbones? Sadly, I’m going to be finding out soon enough.

So, I’m trying not to dwell on the physical changes and discomfort that’s about to begin. Today, I woke up tired but physically I feel great. I want to lift weights today, and if the doctor says it has been enough time since the bone marrow biopsy, then I’m going to get in an upper body workout. I’d like to go into chemo with sore muscles and feeling strong.

Today is also about Chanukah presents for the kids. I’m crap at wrapping but half the fun of presents is opening them, so I’m going to attempt to wrap some of the presents we bought for the kids. The good thing about kids is that they don’t notice that the crease on the side isn’t perfectly uniform with the crease on the other side. They couldn’t care less that there’s an extra bulge of excess wrapping paper on one end of the gift. All they care about is making a mess ripping the paper off to get to the toys/books/PJ’s/lego inside.

The fact that my treatment is starting right before the first night of Chanukah is so significant to me. It’s a holiday of miracles, of light, and of life.

Thank you all for your continued tefillot: Shira Batya bat Chaya Yehudit

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Ema Kallus

The adrenaline rush I’ve been on for the past couple of days left right around Tani’s Chanukah party this morning and I’m seriously wiped. I’m just so tired that I’m really looking forward to Shabbat starting so I can just curl up with my family and sleep.

I’ve been thinking about my Grandmother a lot over the past month. We were very, very close. Ema Kallus was a Holocaust survivor, the only member of her immediate family to survive Hitler, and she was a survivor through and through. When I was five, my mother returned to work and Ema quit her job as a seamstress and came to take care of us. She would walk over to our house from her apartment a couple of blocks away and wake us up for school, she took care of the home, cooked our meals, and was there when we came home from school. She took care of us until I was in college, and she finally “retired” when we were all old enough to take care of ourselves.

Ema was basically the one who took care of us when we were sick, so my parents didn’t have to miss any work. I remember one year I had really, really bad bronchitis. I had a high fever and a miserable cough. I remember walking down the steps and into the kitchen where Ema was cooking dinner (it must have been around 8:00 a.m.) and I just vomited everywhere. She took care of me, clean everything up, and tucked me into bed. Ema was there when I broke my heel in elementary school, she came with me to the orthopedist and then stood on one side of the alleyway behind the medical supplies shop and caught me as I tried walking on crutches. But beyond physically taking care of me when I was sick, she was a huge emotional support. In her eyes, I was always beautiful. I was smart. I was funny, and good, and kind. She was one of my biggest cheerleaders. She listened when I talked to her and always loved giving me her unsolicited advice.

Tani was 14 months old when she passed away suddenly. I know it’s weird to say that a 90 year old could pass away suddenly, but it was very sudden for me. I called her Erev Shabbat and we had a real conversation. It was great, she had been suffering from Alzheimers but that Friday, she knew who I was! She asked about Gaby and the kids and then she told me she loved me three times before we hung up. I felt really happy going into Shabbat, those moments of lucidity were so rare and precious. When my Dad called me after Shabbat 25 hours later, I was shocked and devastated. I couldn’t believe my Ema was gone, not after we had such a great call the day before!

Ema is buried here in Jerusalem. Her burial was held late at night, in the cold December air, days before the start of Chanukah. Under torch light, we said our goodbyes and buried her in the land that she loved. Israel was her home immediately after the Holocaust, and she had a very special connection to this Country. My Grandparents were not wealthy people but they would save their money to come to Israel. They would rent a room with a balcony at the Kings Hotel and my Grandmother loved walking across the street to the Supersol that’s still there. She would buy a pita, cucumber and tomato, and some Leben and they would sit on their balcony and watch all the traffic pass by. I think about her every time we drive pass the Kings Hotel, and imagine them sitting in the hot June sun, eating their Leben and people watching.

On November 12th, three days before my cancer diagnosis, I took my parents to the cemetery to visit my Grandparents. My parents were returning to the States and wouldn’t be here for Ema’s Yahrzeit, so we went together before their trip back. I davened and asked Ema and Abba Kallus to pray that I was going to be ok. That the results of the CT would be good, that I was healthy. I promised I would be back to visit again soon and we left.

Three days later, my world changed.

The sky was a brilliant blue this morning as we drove through the cemetery. It was very busy, cars filled the lot before rows of gravestones, but we were able to park next to their burial plots. I brought yahrzeit candles and we left the car and walked down to Ema and Abba’s graves. And I cried and cried. I begged Ema to help me, to take care of me again. I yearned to feel her arms around me, and I’m not a hugger, but I just need to feel her arms around me. Gaby cried as we said tehillim and I begged them both to be my advocates, to pray that I will be cured. I noticed that the Hey on my Grandmother’s tombstone was covered in sand, so I cleaned it off with my bare hands, my tears leaving tracks next to her etched name.

It was hard walking away but I begged them to help me come back for next year’s Yahrzeit.  I felt physically spent and emotional; I miss her every day but I’ve missed her so much during the past month.

Ema Kallus was a survivor. She was a fighter. She was the strongest person I’ve ever met. I know there’s a big part of her deep inside of me. I’ve been trying to tap into that strength since my diagnosis. I’ve even started wearing her ring, the one I inherited when she passed away. It was one of the few pieces of jewelry she used to wear during the Yamim Noraim to shul. Her fingers were swollen with arthritis but she still wore this ring on her pinky finger. Seeing her ring on my finger gives me strength, it gives me hope, and it helps me feel her beside me.

May we all have a peaceful and healing Shabbat

Please continue your tefillot as this week I will P”G begin treatment.

Shira Batya Bat Chaya Yehudit

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