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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Diagnosis and treatment

My last blog post was so, so bleak. I was in such a horrible place when I wrote it, and I feel like a completely different person today. It’s 12:09 a.m. on Friday morning, I just forced myself to stop working, and the adrenaline from today is literally coursing through me. I don’t think I’ll be able to get to bed, the past 48 hours have been intense.

But here’s a quick update.

I was finally diagnosed on Tuesday morning. I have Diffuse Large B-Cell Lymphoma (DLBCL) which is a very aggressive form of lymphoma. I don’t want to talk about staging or percentages because I’ve never been a numbers person so why start now. My oncologist is no longer my oncologist because I have blood cancer, so I will now be treated by an onco-hematologist. I can’t even express how much Dr. Segal and Dr. Wygoda at Shaare Tzedek hospital have helped me through this entire difficult process. I am very grateful for their care and concern.

Now the real battle begins.

My husband managed to get me an appointment with Dr. Moshe Gatt at Hadassah Ein Karem on Tuesday at 4:00 p.m. It was a Sharap appointment so we had to pay out of pocket, but I needed to see a hematologist ASAP so I could understand more about my cancer and my prognosis. He came highly recommended so we jumped at the opportunity to meet with him. We had to scramble to get people to take the kids and do pick up and stay with them, but we were thank g-d able to manage. Gaby’s Aunt Della joined us for the meeting.

Dr. Gatt was amazing. He explained what I’m facing, looked at all of my test results and my blood tests and then said what everyone else has told me. It was a miracle that I decided to go for gastric bypass surgery because I am asymptomatic and yet I have a very advanced form of cancer. He outlined the treatment plan which basically consists of 6-8 rounds of a chemo called R-Chop. So, every three weeks, I will need to come to the hospital and get hooked up to a drip of Chemo and them hopefully I get to go home and deal with the side effects.

They are going to essentially wipe out my entire immune system and the cancer cells and hopefully, after treatment is completed, I will be cancer free.

He did recommend that I have a bone marrow biopsy, to rule out a couple of potential issues, but Chemo needs to start right away because of the advanced stages of the cancer and its aggressive nature.

But, all the hematologists are leaving the Country to go their annual convention in Atlanta and Dr. Gatt won’t be back until December 14th. So, I can’t start chemo until December 17th.

We told him that I was also considering to continue my treatment at Shaare Tzedek because that’s where I’ve been going thus far, and he was very kind and said either hospital would be a good choice but he would be happy to take on my case. He gave me his cell phone number and told me what numbers to call to schedule the bone marrow biopsy and to make my first chemo appointment.

I went home Tuesday night feeling very, very encouraged. I can beat this!!

Gaby’s Uncle was able to get me an emergency appointment with my hematologist Dr. Ashkenazi for 10:00 a.m. Wednesday morning. I was looking forward to seeing him since he has been my doctor for the past six years. You see, I have a blood clotting disorder called APLA, that really is only an issue for me during pregnancy. While I was pregnant, to keep my body from throwing clots that could cause miscarriage, I had to take Clexane (anti-coagulant) and aspirin. He was my doctor through two of my children’s births and I have been happy with his care.

It was pouring rain on Wednesday morning and we parked outside the hospital and sprinted through to make our appointment. When we got to the 6th floor of Shaare Tzedek, the receptionist gave me all of these instructions including that I need to see the nurse, then I needed to give blood and have an infusia put in (that’s the thing they put in your veins so they could administer medication and take blood) and I was just confused. Wasn’t I just here for a consultation? The nurse looked at me and said that the doctor ordered a bone marrow biopsy. And I was just floored, no one had warned me! But, it’s a test that I desperately need, so I said let’s do it.

Dr. Ashkenazi was wonderful. He was patient and kind and he explained everything about my cancer. He told me that in my particular case, the cancer decided to bypass the lymph nodes and go straight on the attack on my organs and bones. It’s an aggressive cancer and we need to kill it ASAP before it invades my central nervous system. The bone marrow biopsy will let them know if the cancer is in my bone marrow and if there is another form of lymphoma hiding in there that will guide the chemo they prepare for me.

The bone marrow biopsy was not pleasant but they gave me a sedative and I was able to zone out/sleep for about 40 minutes post-exam. It was really sore on my back and there were restrictions, but it was my daughter’s birthday and we were about to host 17 nine year olds in our apartment. My mother-in-law and our lovely neighbor Maya came to help and I was able to rest while Gaby and Maya ran the party. Yarden was in heaven, she had a fabulous time, and the day was just wonderful for her.

Today, I woke up a little late and dragged myself out of bed because I was really sore, but I managed to get things done. I had an appointment with a psychiatrist that I had set up as part of the pre-op for gastric bypass and then I had an appointment for an eco at Shaare Tzedek.

Before I can start chemo, three things needed to happen:

1) My health insurance carrier needed to approve my chemo. Apparently, they can’t administer the drug to me unless my health care provider approves it. I didn’t know that Dr. Moshe Gatt at Hadassah put in a request but 15 minutes ago, I got an email that said the chemo was approved and is waiting for me at Hadassah

2) Bone Marrow biopsy – we need to know if the cancer is in my bone marrow and if there is anything else in there. This will guide the chemo and treatment protocal

3) Eco – some chemos can damage the heart muscles, so they needed to check that my heart was in good shape and to take measurements that they can compare after a couple of months. Thank g-d, my heart is in good shape so I can start treatment and P”G my heart will be able to withstand these powerful drugs.

I’m still undecided on a hospital and doctor since I like both Dr. Gatt and Dr. Ashkenazi.  By Sunday/Monday, all of the test results should be in and waiting for Dr. Ashkenazi in Shaare Tzedek. He is not going to the conference so I can start chemo P”G Tuesday/Wednesday. I’ve been approved for the chemo at Hadassah but Dr. Gatt won’t be back or able to administer the first treatment until December 17th.

I really don’t want to wait! I want to get started on Chemo so we can kill this awful cancer!

We told the kids tonight about my diagnosis and that was very hard, but I will have to blog about that another time.

Tonight, I’m going to try to get some sleep and just keep positive! It will be a rough road but please g-d my body will respond to this treatment, the chemo will kill these awful cancer cells, and I hope and pray I will live a long and healthy life with my husband, children, and family and friends.

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

 

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19 Days Later

19 days since my cancer diagnosis and still no word. I have been refreshing my inbox every five minutes, hoping for an email from my oncologist. The volume on my ringer is up high, as I sit alone in my apartment, waiting for the phone to ring. Waiting for answers.

Today, I just feel such despair. I feel like they are just letting me die. It has been seven days since my liver biopsy and I have no information, no answers, no hope. Every day that I don’t have treatment is another opportunity for the cancer cells to grow, to invade another bone or organ.

The PET CT showed that I have cancer cells in my liver, spleen, the neck bone, my spine, my pelvis and right femur. Where else is this cancer?

G-d, sometimes I wish I were more Israeli. An Israeli wouldn’t wait patiently like this, they would be down at the hospital, screaming and yelling for answers. What I really want to do? I want to camp out outside pathology and stay there until someone gives me the results. I want to stare at each and every person walking in and out of that department; I want to hold up a sign that says “the longer it takes for you to look at my results, the closer I am to dying. I have three kids, will you let me die?”

I am raging inside, yet I’m a good little American and so I’m calm and composed. I walk around, run errands, pick my kids up from school, go to work, but inside I am a complete basket case.

I don’t feel strong, I just feel angry. And all I keep hearing about is “state of mind.” How my state of mind will help with the battle against cancer. How I need to stay positive and have hope. Its been 19 days since my diagnosis and I have no answers, I haven’t started treatment so essentially, I’m not even in the battle. I’m still stuck on the sidelines, waiting. Tell me how am I supposed to feel hope?

Last night was the last time I pick up the phone to tell someone that I have cancer. Do you have any idea how awful that is for me? This is why I’ve been blogging. Why I told people via email. Telling someone face to face was torture, telling someone over the phone was just as bad. I’m not going to do it anymore. My cancer diagnosis is only a secret from my children, I honestly don’t care how many people know. Especially if the people who do know can either 1) help make my life easier once I start treatment or 2) care about me and my family and will keep us in their prayers.

I have no choice, I just have to keep on. I have to pick up the kids from school, take them to swim practice, then come home and work. I have a sink full of dishes that needs washing and an overflowing laundry basket that needs to be sorted. I have four conference calls that I need to prep and attend, and a mountain of Chanukah presents that need to be wrapped.

Robert Frost has never been my favorite poet but I just keep thinking about “Stopping by Woods on a Snowy Evening” and this refrain keeps going in a loop in my head.

The woods are lovely, dark and deep,

But I have promises to keep,

And miles to go before I sleep,

And miles to go before I sleep.

I don’t want to die.

Please daven for me: Shira Batya bat Chaya Yehudit

 

 

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The House with No Mezuzot

On Wednesday, I lived in a house with no Mezuzot. We had a slow start to the morning on Wednesday because of Gaby’s cousin’s wedding the night before. It took longer for me to drag myself up and out of bed but I managed, even though I was so tired. Gaby offered to do the morning rush and since we were letting the kids sleep in, no one had to be up and out the door at 6:00. But we knew that at 7:30 a.m. we all had to be prepared for the visit from our Doctor, our Mezuzah Doctor.

I don’t know if it’s like this in your families, but my family likes to be super thorough when bad things happen. We address whatever can be addressed physically: we deal with doctors, tests, change our eating habits, our exercise routine, do research, speak to the experts, etc. Simultaneously, we hit up the existential. We daven, sponsor learning, say tehillim, visit the graves of our ancestors, give tzedakah, do hafrashat Challah, visit the Kotel, ask forgiveness from people we may have wronged, etc. And while we’re dealing with licensed and trained MD’s, we also make sure we call the Mezuzah Doctor.

My Dad davens during the week with this particular Mezuzah Doctor and he shared the phone number with me. In the whirlwind that has been my life since my diagnosis on November 15th, Wednesday was literally the first day I had available for him to come.

And he blew into our home like a man on a mission. With precision he walked from door frame to door frame, removing Mezuzot, extricating tightly wound scrolls and placing them gently into a plastic bag. He had some trouble removing the Mezuzah from our kitchen door frame, a beautiful silver antique piece that Gaby inherited from his late Grandparents, which has adorned our home since we moved in three summers ago. With a yank he was off, leaving as quickly as he entered, promising to return the Mezuzot by 5:00 p.m. that evening.

Gaby and the kids left shortly thereafter and I was alone in a home with no spiritual protection. I felt even more vulnerable that I’ve felt over the past 14 days, and it was extremely unnerving.

I curled up in my work chair and settled into my massive task list. The end of the month at work is always very busy, so I was happy for the distraction, and for a couple of hours I was able to just focus on my to do list. But inevitably, my mind began to wander, and I thought back to the wedding the night before.

The kids looked amazing, the bride looked beautiful, and I was an emotional wreck. Although the kids looked great, they were already overtired, and spent the beginning of the wedding pulling and pushing, kvetching and complaining. After two meltdowns, I looked at Gaby and told him he better load up at the shmorg cause we were going home as soon as the Chupah was over. There was just no way the kids were going to make it through a meal and dancing if they were already having meltdowns. My body felt sore from the liver biopsy the day before and I was suffocating in my Spanx, and I just couldn’t make small talk and smile when inside I’m just a mess. We took the kids to a small table and just tried to keep them calm until the girls needed to walk down the aisle, to keep their dresses clean until after the Chupah and the pictures. The wedding started to run late and fatigue just hit me, all I wanted to do was get into a pair of loose fitted pajamas and crawl under my covers. The bandage over my biopsy site was starting to itch and I was desperate for a hot shower.

Finally, the music started and the Chatan was on his way to the Kallah. The girls were called to come over and get their flowergirl baskets, and so we  made our way to the cluster of people. I was nervous about getting pushed since there were a lot of people and one of my post-biopsy instructions was not to get pushed or fall, and so I walked on tentative legs towards the crowd.

Above the waves of colorful shaitels and shmatas, I met her gaze and froze. There she was, my mammogram technician, all coifed and made up for the wedding. I placed her immediately and felt the blood rush to my face while my neck went cold. I’ve never felt emotions like that before – fear and shame at the same time. There she was, the woman who just days earlier got really intimate with my right boob, and one of the few people in the room who knew that I have cancer. After a few seconds starting at each other in recognition, I was thankfully pulled away by Sivan.

We made it through the Chupah in one piece and then, as the Chatan and Kallah danced towards the Yichud room, we stopped off at our table to say goodbye to the family and left. We didn’t get home until after 10:00 p.m.  and the kids were all fast asleep.

We did manage to take some beautiful pictures of the kids, and so to distract myself I scrolled through the images. And then there was a ping of an incoming email, and I saw it was a message from one of my oncologists (I have two). The results from my breast biopsy were in, and they were benign.

But since I was living in a house with no Mezuzot, I didn’t know how to react. Was this good news? Was this bad news? Could I still have breast cancer but this spot wasn’t the primary?

I tried to read through the Hebrew pathology report and then just gave up and sent it over to Gaby and my primary care physician. I wrote back and asked “is this good news? I sent the same question to my primary care physician and then called Gaby, telling him the results.

My oncologist wrote back that they didn’t find anything abnormal in my breast tissue and so that was good news. But we still don’t know what kind of cancer I have, and where’s the primary. All we now know is that whatever they biopsied from my breast was benign.

And so here I am, Friday afternoon, two days later and still no answers. I should tell you all that I hate puzzles. I have always hated puzzles. I have no patience to fit pieces together to get a final picture. Yet, here I am, trapped in a cancer puzzle with missing pieces that are taking their time fitting together to complete the picture.

We just have to wait for the liver biopsy results, and continue to daven and hope that the prognosis is good and that whatever cancer I have will be treatable and curable.

The Mezuzah Doctor returned as promised on Wednesday night. He was no longer in a rush, it was the end of his day, and so we were able to have a chat over coffee. We learned that his wife is the librarian at Yarden’s school, and that he has been checking Mezuzot for years. And as he went from room to room, returning the precious boxes back to their rightful place, we also learned that all of our Mezuzot were kosher.

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

Shabbat Shalom from Jerusalem

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Liver Biopsy

How can six days feel like a year? But it has been six days since my last blog post and I’ve been so busy trying to figure out what is going on in my body that I’m mentally drained. Physically, thank g-d, I feel great. Emotionally and mentally, I just feel drained.

Last Thursday morning, I jumped out of bed when my alarm rang at 6:00, got Gaby and the kids out to school and took a cab to the Medical Center for a dermatologist appointment I had scheduled months and months ago. I was going for a routine mole check and because I’ve been breaking out more than I’d like as a 41 year old woman. I ended up spending almost an hour with her, explaining the situation, and getting a thorough workup for Melanoma. B”H she didn’t see anything but as we were sitting down and talking, she mentioned that I should go see an Opthalmologist because there is a very rare melanoma of the eye that first metastasizes in the liver. I remembered that my eye doctor from childhood told me that I had a freckle near my optic nerve so it was really worth getting looked at. My dermatologist was incredible and immediately called in a favor and got me an appointment across town with a colleague.

I can’t explain what it felt like to get some control back in my life. I have been spending days getting shuttled around from appointment to appointment, I stopped driving because I haven’t been in a good head space, and as an independent person, that was really hard. Thursday, I felt like I finally had some control and so I hopped a cab to Beit Hadfus and waited my turn for the Opthalmologist. While waiting for my eyes to dilate, I sat next to two octogenarians from New York. They were talking about their Grandchildren and people they knew in common, they talked about Daf Yomi and really boring, mundane stuff. And I felt a surge or jealousy that I can’t even explain. I was jealous of these 80 year old men just hanging out at the doctors office waiting their turn for routine appointments. And while I know I don’t know their back stories at all, I was envious because the future I had envisioned for myself – being a badass old Savta – is murkier these days. And that’s hard.

Fortunately, the Opthlamologist confirmed the presence of a freckle near my optic nerve but said it was flat and old and he doesn’t believe it to be the primary cancer. I felt both relief and frustration though since I really just want answers, but it gave me strong hope so I walked across the street to Shigaon Shel Shulchan and got a ton of turkey plates on clearance.

We were gonna have Thanksgiving on Friday night, no matter what. I love Thanksgiving, it’s literally my favorite national American holiday. I usually love to host a huge Thanksgiving with family and friends but I just wasn’t up for that this year. Instead, we had an intimate Friday night Thanksgiving at home where we all went around the table, said what we were thankful for, and ate delicious turkey with all the traditional Thanksgiving fare. We tucked the kids into bed later than usual Friday night and then my mind started to wander, and while I am really good during the day at just keeping busy and focusing on what I need to focus on, the nights are hard. Gaby begged me to take something to help me sleep and I finally gave in, and for the first night in days, I slept peacefully.

Shabbat we spent the afternoon being hosted by wonderful friends and we all had a great time. Sunday morning, it was back to the grind, as the liver biopsy appointment loomed closer and closer.  Sivan needed a blood test and a hearing test, and she was complaining that her throat hurt, so I spent the morning with her at the Medical Center. It felt good to focus on someone else for a couple of hours, even though the blood test was very unpleasant. I decided to let her stay home with me for a Yom Kef and we had a really nice day together.

So, here’s the thing about cancer, you realize you can’t push things off anymore because time is no longer infinite. I realized on Saturday night that I had never picked up the pottery we painted at Kad VaChomer back in August. And the kids really want to see what they had painted, so I decided that after our doctors appointments, we were going to go pick up their pottery. Except that Kad VaChomer was closed until 3:00 p.m. Sivan hung out in the little park next door and I watched her, with her boundless energy, run around and play. It was a special moment. Then I bought her lunch at Aroma, picked up some organic eggs, and returned home to meet with a 20 year old we are thinking about hiring to help with the kids. The afternoon was a blur of picking up, chug drop offs, and dinnertime. I was thoroughly exhausted by the time I went to bed at 11:30 p.m. and anxious about the liver biopsy in the morning.

What can I say about a liver biopsy? It’s not a pleasant procedure but I was in very capable hands. We were running late even though we left at 7:35 a.m. after my father-in-law came to pick up the kids and take them to school, and Gaby and I ended up sprinting through the parking lot to the appointment. I remarked that it’s crazy that I have no problem hustling and yet I have cancer.

We checked in, was admitted into day surgery ward, and I was given a bed and gown to change into. I didn’t have to wait too long but I was really, really anxious. Once again, they couldn’t find a vein since I’ve been blessed with crappy veins and after three tries, they were finally successful. Then an orderly came in and asked if the “Cholah” (sick person) was ready and I honestly looked around. I didn’t think it was me because again, I don’t feel like I’m a sick person. They took me to the ultrasound room where I met with the Professor doing the biopsy. And she was a no BS type of woman. I immediately felt confident in her ability and scared as hell. Here’s the thing about scary procedures, it take my ability to understand Hebrew and just obliterates it. And so she spent 5 minutes yelling at me to “LaZuz” (move) and “Lehistovev” (turn around) and I was just so scared that I couldn’t remember which was which. So, I moved when she wanted me to turn around and I turned around when she wanted me to move. Needless to say, she got frustrated with me. I asked at least three times if they could maybe give me a sedative and they ignored me, and then honestly I just closed my eyes and let them do what they needed to do. I felt helpless and just hoped the biopsy would be over quickly and successfully.

To get to the liver, she felt between my ribs and had me hold my breath a couple of times while cutting out a sample. Of course, holding my breath was hard and I ended up exhaling at the wrong time so she yelled again to hold my breath and thank g-d she didn’t puncture a lung. The biopsy part took about 20-25 minutes and when it was over, I felt pain in my right shoulder. Apparently, that’s very  normal and she told me that she really hopes they got everything they needed and we just have to wait for the pathology report.

Through this all, Gaby and my Mother-in-law were waiting, giving me the emotional support that I needed. They wheeled me into recovery where I laid on my back and dealt with the pain. They asked if the pain was really bad and thank g-d, it was manageable so I didn’t need to take any medication. Honestly, in my lifetime, I’ve had 3 C-sections, been through 36 hours of hard labor, had a D&C, 2 spinal taps, I’ve broken my wrist and my heel and you do not want to have a boil lanced. Not pleasant. My tolerance for pain thank g-d is pretty high, so I just dealt with the discomfort and after three hours, I was feeling much better. They let me out around 2:00 and I was home by 3:00 when the kids got out of school.

So, here’s the thing about liver biopsy recovery. I can’t shower for 24 hours (yuck), the bandage has to stay on for 48 hours (also yuck cause it’s itchy), I can’t fall or get pushed, and I can’t lift anything heavy for an entire week. I won’t bore you with the rest of my restrictions, those are the important ones. I was still feeling a little tentative when I got home, so I popped myself into bed and got to work.

Just FYI – I put in 10 hour day yesterday and got loads accomplished for work – which made me feel really great.

But, I couldn’t hug or hold my kids, and that proved really difficult for them. My eldest was sad, my middle had a meltdown, and my baby basically said eff that Mom and did whatever he wanted to do, which was climb up on the bed and try to get as closed to me as humanly possible.  We dealt with a lot of meltdowns last night and that made me really upset, because I have no idea what’s to come and if this is how they handle 1 night of me having to recoupperate in bed, how are they going to handle what I might have coming down the pike?

We did the best we could to just help them emotionally. I suggested they draw me get well pictures and they ran to the arts and crafts cupboard and got to work. It actually really helped calm them down and we were able to avoid any more major meltdowns. I was feeling very tired earlier than normal but I pushed myself to get in my 10 hours and then fell into bed at 12:30.

And then, the most amazing thing happened to me. I was awoken by the tinniest hands pressing ever so gently on my side. Now, we told the kids that they couldn’t join us in bed last night because I was worried someone might accidentally kick me in the side, but my son just couldn’t stay away. He kept gently pressing on me, not trying to wake me up like he would normally do, but tentatively just feeling around on my bandage. I kept my eyes closed and just waited to see what he would do and after a couple more gentle presses, he pulled the covers over his head, laid down and fell asleep. I know I told him not to join us in the bed, but I was really happy that he did.

That brings us to Tuesday morning. I was up at 6:00 with my alarm, made Aruchat Esser, packed book bags, dressed two kids, made breakfast, and basically got everyone out the door on time. Today is going to be a short day for the kids because tonight is Gaby’s cousin’s wedding. The girls are going to be flower girls and Tani is going to be wearing a coordinating outfit. I hired someone to do the girls hair and everyone is really excited.

Gaby and I are very close to his cousin Noa, who is getting married tonight, and so we made the joint decision not to tell the Zwebner side of the family about my diagnosis. So, even though we feel like the world knows about me, the Zwebner side is in the dark. We didn’t want anyone sad or anxious during Noa’s wedding, we want everyone to just be happy tonight. Aside from Gaby’s siblings and parents, and my friend Heddy, no one else in the family that will be at this wedding knows what’s going on with me. I’m looking forward to pretending for a couple of hours that I’m okay.

And now we’re back to waiting. At this point, I have no more procedures set up. I have no more doctors to go see, I just have to wait for the pathology report.

So we’re waiting and I’m trying to live my life the best way that I can. I’ve thrown myself into my work, I’ve been taking LOADS of advantage of Cyber shopping and sales because this year, the kids are going to have an AWESOME Chanukah, and I’ve started organizing things around the house.

Sorry for the long update, if you made it this far thanks for reading. And thank you all for davening for me. I’m overwhelmed and humbled by the incredible response from family and friends, I hope one day I will be able to repay each and every one of you for your kindness.

Please keep davening for me:

Shira Batya Bat Chaya Yehudit

 

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The waiting game

Before I update what’s been going on during the past 24 hours, I want to thank everyone who has reached out to me, started saying tehillim, organized learning, done a good deed for my refuah, etc. The incredible support I’ve been getting from so many people – past and present, friends and family – has been overwhelming. I appreciate you all, your support is uplifting.

The past 24 hours has been exhausting and busy. Last night, after getting preliminary reports from my PET CT, I left my husband to deal with dinner and I went to the Mikvah. This was my first Mikvah experience since my diagnosis and it was very, very difficult. After immersing in the waters, I just cried and cried while the Balanit kept telling me it was going to be okay.

How is this okay?

I didn’t sleep last night. Truth be told, closing my eyes is scary. So I spent the night wandering around the house, checking in on the kids and Gaby. I had an 8:15 a.m. appointment with my oncologist at Shaare Tzedek this morning and my anxiety levels were through the roof. I was up and moving well before my alarm rang at 6:00 a.m., and we managed to get all the kids off to school by 7:30 a.m.

The oncology ward at Shaare Tzedek was already teeming with people by 8:00 a.m. Let that sentence sink in because it is an unbelievable sight. We didn’t wait long before one of the oncologists on my case met with us and brought us into a room. I started the whole story of how I even got there to begin with and she shared the results of the PET CT with me.

The bad news: they couldn’t identify a primary source of cancer from the PET CT

Second bad news: I will need a biopsy of my liver to help determine the primary source of cancer, so that they can stage and figure out treatment

Third bad news: the PET CT results showed metastasis on my liver, spleen, and bone. They saw a small shadow on my right breast and possibly something in one follicle of the left ovary.

But even with all of the things they see on the scan, it’s not enough to know what kind of cancer I have. And, as much as it sucks, I now have to just wait. I have to wait to have a liver biopsy, then wait for the pathology report which could take between 10-14 days, before knowing hopefully what I have.

What I’ve learned during the past week of living with cancer is that knowing the primary source of cancer is CRUCIAL in treatment. These days, treatments are so so specialized that you must know the primary source. So, I’ve been praying for the following:

1) That by some grace of g-d and some miracle this is all a big mistake and it’s not cancer, but some other easily treatable rare medical issue.

2) If it really is cancer, they identify the primary source ASAP

I was overwhelmed with information after meeting with the oncologist and since most of the answers to my question was “we don’t know, we will know more after the liver biopsy” I didn’t leave anywhere closer to understanding what is going on with me. My husband asked my oncologist if I can do things, if I can exercise, what should I be eating?

My oncologist said that I can do whatever I feel well enough to do, and that I can definitely exercise. In fact, he encourages it. He then paused and said, it would also be good if I could try to lose some weight.

And I just looked at him and said “but that’s EXACTLY what I was trying to do and somehow I ended up here!” He smiled. I guess even oncologists can have a sense of humor.

Because of the small shadow they saw on the PET CT in my right breast, they sent me to have a repeat mammogram and ultrasound. Fortunately, they were able to get me in today for these tests.

Now, I had my very first mammogram and ultrasound back in July. As soon as I hit 40, I spoke to my doctor and discussed going for this test. My maternal Grandmother had breast cancer in her 50’s and I wanted to make sure I was tested early and often. I also participated in a BRCA1 trial last year and was told that the results were negative and I did not carry the gene. They told me back in July that the tests were all normal, and I felt such relief!

Today, after taking what seemed like a million images of my right breast, the doctor did an ultrasound and decided to biopsy whatever the “spot” is that was picked up in the PET CT. Now, no one warned me about a biopsy and I’ve never had one before, so you can imagine how frightened I was. And have you ever seen the size of a biopsy needle?? I just closed my eyes tight and tried to imagine myself anywhere but on that table. I was shaking so hard from fear that the mammogram technician had to physically hold me steady.

And now we are back to waiting. This test will also take between 10-14 days before we get any results back. I’m scheduled for a liver biopsy on Monday morning. That test will take four days longer before I can get the results and see my oncologists.

There are a number of restrictions on what you can physically do after a biopsy. One of which is that I can’t lift anything weighing more than 5 pounds for the next 3 days. That would have been okay if 1) I wasn’t making a Thanksgiving turkey for Friday night dinner and 2) if my 4 year old didn’t have the mother of all meltdowns tonight, begged me to pick him up and hold him, and I was just not able to do it.

That was hard. Not being able to pick up my baby was emotional.

But I am really, really trying to stay positive.  After putting up a wash, moving the wash into the dryer, hanging the wash, cooking rice for dinner, and dealing with a big work crisis, I joked that “this is what Mommy cancer looks like.”

Walking around in this unknown phase is excruciating and disorienting. I need to get through one last test, the liver biopsy, on Monday morning. And all of this waiting.

But I’m really going to try to power through.

Please keep praying for me: Shira Batya Bat Chaya Yehudit

PS. We still haven’t told the kids, we need more information before we can talk to them. They know something is up but we are trying to act as normal as possible in front of them. This might not be the best decision we are making as parents, but for now, we feel like it’s just the best decision for them. 

 

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Living with Cancer

Disclaimer: Our children do not know about my cancer diagnosis. If you have children who are friends with mine, please do not mention this anywhere near them. We will be telling them soon but need more time. 

It has been six days since my cancer diagnosis. Not even a week has passed and yet it feels like a lifetime. To say that I expected to go a full life without getting cancer would be a lie, but I certainly didn’t expect it to come knocking on my door at 41.

Here’s what I know: I have metastatic cancer of the liver. That means that I don’t have cancer of the liver, just that I have cancer that has already spread to my liver. Right now, they don’t know the primary source of the cancer.

How we discovered the cancer is probably the craziest story you will ever read. So here goes.

This summer, after YEARS of yo-yo dieting, fad dieting, etc. I decided I wanted to take a drastic step in getting my weight problem under control. My blood pressure had been rising even with diet modification and exercise, and I didn’t want to start taking blood pressure medication. I didn’t like the way the meds made me feel and I was convinced that if I just lost the weight, my blood pressure would improve. In October 2016, I joined a group of women on Facebook who were following the Beachbody program. I joined and after 3 weeks I lost 10 pounds and loads of inches. I felt great, I started drinking their protein shake, followed the diet religiously and managed to lose another 10 pounds. But then the beginning of three back to back business trips started and traveling caused the weight to creep back up. I spent January – June gaining and losing the same 10 pounds on Beachbody. By July, I had enough and was disgusted with myself. At the suggestion of my primary care physician, I decided I wanted to undergo gastric bypass surgery. This was a chance for me to finally once and for all lose the weight and my chances of maintaining the weight loss with surgery was very high. It was a scary thought and a big lifestyle change, but I want to live a healthy, physically active life with my husband and three children.

So, I started to prepare for gastric bypass surgery. I did online research and enlisted my husband’s help in finding the top bariatric surgeon in Israel. And my amazing husband was able to bump up my appointment with the surgeon since once I make up my mind about something, I want it done right away. I met with the surgeon in September and even though I was slightly under the minimal level of weight required to qualify for the surgery, he agreed to move forward. So, I started to actually gain weight in order to qualify for insurance purposes and he sent me off to do a host of pre-op tests.

The pre-op tests for gastric bypass is a long list: chest x-ray, stomach ultrasound, blood work, psychiatrist appointment, EKG’s, barium test, etc. My husband scheduled appointment after appointment, some that took 4 months to book, and after the chagim I had my first appointment. On October 28th, I went for the chest x-ray and stomach ultrasound.

A couple of days later, my doctor called to tell me that they found spots on my liver during the stomach ultrasound and – just to be on the safe side – she’s sending me for a CT. She told me not to panic, it could be anything, and we would get to the bottom of everything.

So, I didn’t panic but I did Google to see what could be spots on a liver. And, sure enough, cancer was one of the first things to come up in search. But there was no way I could have cancer! I feel 100% fine. Sure, I’m a little tired, but I get 5 hours of sleep on average, have three kids, home chores, etc. What mother of young children isn’t tired?? I decided not to panic but we did use whatever influence possible to bump up my CT appointment. By some miracle from G-d, there was a cancellation and I had my CT on November 8th.

And then on November 15th, our doctor called us into her office and told us that I have cancer. Maybe one day I’ll be able to write how I felt last Wednesday night, to put into words how terrible it was to tell people that we love that I have cancer. How surreal it was to hear the diagnosis, the physical sensation of real fear, the heartbreak of watching my husband cry.  Right now, it’s just too raw.

During this appointment, I was told that I needed to go for blood work to identify cancer/tumor markers, have a PET CT to find the primary source of the cancer, and to find an oncologist. But, selecting an oncologist will have to come after the PET CT since cancer is specialized. You see an oncologist based on the type of cancer you have and right now, we don’t know what type of cancer I have, just that it has already spread. I will probably also need a liver biopsy, although we are hopeful we will get all the answers from the PET CT.

The good news is that my blood test results are normal. Thank g-d. I had my PET CT on Sunday and I’m still waiting for the results. The waiting is sheer torture; I have good moments and really bad ones.

For now, I am continuing my life as close to “normal” as possible although my life will never be normal again. Last night, I worked until 12:45 a.m. and was up with the kids at 6:00 a.m. I made them aruchat esser and lunch, helped them get dressed and dried their tears, packed their bags for the day and dug out their rain gear. I hugged them goodbye and they went off to school. They sense that something is up but they don’t know and we aren’t in a position to tell them. I need to know more information like: what cancer do I have, is it treatable (please g-d!!), what is the treatment, how will I be feeling, etc. before we can tell them. I want to have as much information as possible so that I can answer all of their questions. For now, we just have too many questions.

My cousin Tova suggested that I keep a blog so that the people who love and care about us can stay informed. I never thought this blog would turn into a “cancer blog” but here it is.

Please pray for me.

Shira Batya Bat Chaya Yehudit

 

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The Most Awkward Woman in the Shul: Rosh Hashanah Edition

Girls_of_Israel_praying_on_the_western_wall-cropped1

So, I’m the Most Awkward Woman in a Shul (temple/synagogue depending on your religious denomination). I don’t know how after almost 41 years of shul going, I became the most awkward woman in the shul. But, it’s definitely the best way to describe me. I try to avoid shul going for this very reason because, inevitably, I do something awkward and weird and I feel mortified and there are just so many shuls we can go to in Jerusalem. We’ve been through five so far and well, it looks like after Rosh Hashanah, we may be on the way out of another one.

So, I tend to avoid shuls all together and when the occassional need arrives where my attendance is absolutely necessary (read: High Holidays and Bar/Bat Mitzvahs), I just pray I make it through.

If you know me, you also know about my obsessive personality. So of course, since first day of Rosh Hashanah ended, I cannot stop thinking about the incident that has solidified my title as the “Most Awkward Woman in the Shul.™”

During the High Holidays and once a month on Shabbat Mevarchim (special prayer for the new Moon), we like to pray at an Assisted Living Facility Old Age Home in Jerusalem. We enjoy the atmosphere and the people, and we especially like how some of the residents really light up when they see our children running around the hallways. It also helps that no one yells at the kids for being too noisy or messy or rowdy; they are just legitimately so happy to have the little ones around to interact with.

On High Holidays, a number of the residents (especially those who are very mobile and mentally sound) will pray with us in the community room turned into a shul. So, by the time I sauntered into davening with 10 minutes to go before the first Shofar blowing, the women’s section was pretty packed. Not too crowded that I wasn’t able to snag three seats for myself and the little ones, but impressively populated nonetheless.

I settled in to daven for the first time all year, and refereed a little bit between the kids, and was hoping to just get through the entire Rosh Hashanah liturgy without any awkward incident.

G-d clearly had other plans for me.

One thing I should mention here is that we oftentimes have to help some of the other women during davening, especially those who live at the facility. Whether it’s to find the place, or to help move chairs so that wheelchairs can get in and out of the rows, or even something small like lifting a shawl that slipped off of a woman’s shoulders during the prayers. Whatever it is, there’s always some small ways the non-residents are available to help the Assisted Living Facility Nursing Home residents successfully attend the davening.

I let the first 30 sounds of the Shofar fill my soul and began the long Mussaf Amidah on aching feet in shoes that were just not the right footwear for such a long davening. But I was feeling good inside, hopeful for a good New Year, silent prayers for myself and husband and our children going through my mind. My outlook was rosy, it was a New Year! Our sins will be forgiven, and we will be written into the Book of Life!

It was during this high, almost meditative state that my 6 year old needed a bathroom and so I put down my Machzor (special prayer book for Rosh Hashanah) and took her to the bathroom. We were in there longer that I had planned and I started to get anxious since there are another 30 Shofar blasts embedded within the Chazzan’s repetition of the Mussaf prayer, and I really did not want to miss them.  So I tried to hurry her along. Finally, after babbling on and on about the emergency pull cord that is installed in all bathrooms at the Assisted Living facility (Mommy, do you know why this is here? Mommy, let me tell you why this is here! Mommy, it’s in case someone needs some help! And Mommy, we shouldn’t pull it because we don’t need help. Do we need help, Mommy? etc. etc. etc.) she was done!

We hurried back to the makeshift shul and walked into the room, where I immediately noticed two things. 1) Every one was standing and 2) there were what looked like two pieces of paper on the floor in front of an elderly woman.

Well, I was feeling helpful, since that’s part of my unofficial role at the shul, and as I quickly made my way back to my seat, I swiftly bent down, picked up what turned out to be two tissues that had been spread out onto the floor in front of this woman, and put them gently down on this woman’s seat. I then continued to my seat without looking her way.

The mistake I had just made didn’t dawn on me right away. I flipped some pages looking for the right spot, and then the Chazzan called out in his booming voice “Alenu” and still, it didn’t register. It wasn’t until I was semi-prostrated onto the marble floor and was able to glance back at the now scowling woman, that I realized my mistake. Those two carefully laid out tissues did not just fall from her Machzor but were rather placed purposely to cover the ground that she was able to kneel on during the prayer.

I’m sure I flushed a bright red and not from the blood rushing to my head in my awkward prostrating position (I don’t go all the way down on the floor since that’s not what we did as children, but rather we like kinda crouch real low and throw our head over like when you’re at the hairdresser and they want to blow dry underneath) with shame. When we were finally able to stand, I glanced her way again and this time she was tsking and muttering and shaking her head in my direction. She then carefully folded these two tissues like they were an Hermes scarf and tucked them back into the folds of her Machzor.

Whoops! I was really embarrassed.

Fortunately, my husband popped his head into the women’s section a couple of minutes later and I quickly went out to tell him what happened. I asked him what should I do? Should I apologize to her and say that I hadn’t realized where we were up to and obviously I would never have picked up the tissues had I realized they were on the floor on purpose?

My husband shook his head and said no, I should make myself “Nishvisindik” and just ignore it. Act like it never happened. If I start apologizing then she’ll feel cause for anger even though it was a mistake and we will end up causing more of an issue then it really was, etc..

I was surprised he managed to use my Mom’s favorite Yiddish phrase for such an occasion but when it comes to Israeli culture, I take my queues from him. And so, I returned to my seat while avoiding this woman’s gaze. I did notice that she had moved her seat up by two rows, thus putting five rows of seat between us, making a significant separation so I shouldn’t feel the need to “help” her again. The “Most Awkward Woman in the Shul.™” strikes again, I thought miserably.

So, why am I sharing this story with all of you during the Ten Days of Penitence? Is it my search for public absolution for not apologizing to this woman on the one day of the year you are SUPPOSED to say you’re sorry? Is it to share my shame so my friends can also tell me to just forget about it and move on, it wasn’t such a big deal?

Nope. I’m sharing my story as a cautionary tale for this New Year. Something I will definitely try to do moving forward.

If there is anything you can learn from my story it’s this:

Make sure a person needs help, before you help them.

Gmar Chatimah Tovah. May we ALL merit a place in the Book of Life and may this year be full of good health, happiness, good fortune and limited awkward moments.

 

 

 

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