Sometimes the Truth Hurts

"If you had to think of the absolute worst thing that could happen to you, what would it be?" 

"If G-d forbid someone that I loved was sick or hurt or....."

"No, not someone else. YOU. What's the worst thing that could physically, actually happen to you?"

Imagine, G-d forbid, that "thing" is happening.... To you.

It's happening. To me.

A couple of days ago, I cracked. Again. The umpteenth person sent me a text message that said, "How are you feeling?" and I cracked. I broke and I wrote about it here, on this blog.

The response has been very interesting. Mostly loving and understanding. Questions. What is the right thing to ask? Or say? Part of me feels guilty and sad. I could've held back and kept those emotions to myself because some of the feedback shows me that not everyone understands what I was trying to say.  I am not angry about being asked how I'm feeling. When you ask me, how are you feeling, you're showing me that you're  thinking of me. I get it. But, before you ask me or anyone, please think about the question and think about how you would be feeling in that situation. 

Well, what exactly is the situation? The situation is, an advanced, life threatening illness that has already defied treatment. An illness that is getting worse and usually ends in death. I'm publicly trying to defy the odds. I'm trying and succeeding at finding meaning and happiness in the blessings that come with this life threatening cancer. 

Right now, the treatment is killing me quicker than the actual cancer. Yesterday, we went to the hospital, hooked up to fluids, had blood tests and the results show that I have half of the lowest normal white blood cell count. With a level of 0.6 neutrophil count, I appreciate the miracle that I am pretty darn healthy. With a WBC of 2, I'm very lucky to be fever-free and walking around like a regular person. These miracles amaze me. I'm happy that I'm this well! When my doctor told me I cannot receive treatment, I cried. Am I losing this? Am I dying? Is the cancer taking over? What's happening??? The answer, "We don't know". How would you feel about that?

I have a lot of emotions and obviously I don't and shouldn't share them all with the world. I don't write about what I'm feeling or going through on a daily basis. Usually I write when something profound or especially poignant happens in my life or in my heart. 

I think about how I've reacted to illness and death around me. Have I always said and done the right things? No. I've felt uncomfortable and choked on my own heart while yearning to say or do the right things too. I've experienced so much kindness and love from so many people and sometimes I find myself tolerating things that are meant to be kind and loving but are not. If I have the opportunity to share and express a truth that is hurting me then surely that's the correct thing to do? But it hurts. Yes.  I am sorry about the hurt I have caused. I'm happy and blessed if I make a difference in one person's life with my painful truth. Not everything in life feels good all the time. Sometimes the truth hurts.

I'm Fine...

 I should probably be worried that what I'm about to write is going to upset you and leave some people wondering or worried that they said or did the wrong thing. I have no fear. I can't hold back. How am I feeling? I'm surprised at the amount of times per day that I'm asked that question. Seriously? How do you think I'm feeling? Do you really want to know? How long do you have?

I hate myself for feeling low, for wasting a perfect moment on worrying about tomorrow. I feel sad counting down the days to chemotherapy day.  Tomorrow. Again. I don't want to throw away time to cry and wallow. I should have a life.

I wonder if when people see me or think of me, the first thing that comes to mind is, poor her. "How is she really feeling?" I wonder if people think, how sick is she? Is she going to live? Or die? Will it be soon?  As soon as I hear the question, I freeze inside.... "How are you feeling?"

Yes, it's awkward to be that person; the one with cancer. It used to just be annoying but now it's infuriating to listen to the mundane babble about the stupid things that people worry and complain about. Things that waste time and effort. Petty things that feel like being slapped across the face because I only wish I could worry about such nonsense.

I wish I could realistically muse about graduations and Bar Mitzvahs, making weddings and becoming a grandmother someday.

I realize how natural and normal it is to want to ask that question.... It's automatic like, how are you? Only it's not exactly like that. It's how are you feeling.

Still here. 

Still have cancer.
Fill in the blank ________________.

I've been in the middle of a happy carefree activity, almost completely forgotten that I have a life threatening illness, and a text message comes up on my phone: How are you feeling?

BOOM! Smack!

...and I know the intentions are good and pure. I guess when anyone thinks of me these days, they think of cancer and illness. That's sad for them (sadder for me fyi)....

Just the other day, someone said, "You look so healthy! Last time you did chemo, you looked awful, but this time you look great!". People actually say things like that to me. In some ways I appreciate their honesty and it sure beats hearing about the (insert person they know of ) who died of cancer. On the bright side, at least they're not asking me a question that I'm sick of pretending to answer.

I'm so sad now because I know I'll feel worse tomorrow and the next day.  I want to dwell on the happiness and reflect on those weeks I took a break from this dreadful reality of chemo and cancer and dying.

I've been very open about every step of this cancer journey. I have no issue being public. Keeping things real.  Just please stop asking me how I'm feeling. I have nothing new to say.

Rabbi Shlomo Katz - A Home Visit

A week ago I had chemotherapy. Shlomo Katz, a well know rabbi, educator, musician, and a dear family friend, made a special trip to our home. I finished chemotherapy, for the day, and we drove home. My dear SIL, Briana, brought all the meat, French fries and salad, my DH barbecued, while my mom, brothers, Levi, Matt, and Josh, SIL, Hadar, children, nephews, and niece joined in the celebration of....  Rav Shlomo came to celebrate with us. I think what we were celebrating developed easily and clearly. Just life. Just being alive. Just being a family together. 

http://youtu.be/SJJXqGZiw84

I'd like to think? Or thank?

When I was first diagnosed, had my huge surgery, was declared NED (no evidence of disease), and began chemotherapy in September, 2012, it was different. I had love, and faith, and hope and I was also euphoric. I thought I'd beat every odd. I thought I'd already kicked cancer. Some people worried that I would eventually hit a low point and crash. I did. It really hit me around the middle of treatment after my blood cell counts were too low, I'd missed two treatments, there was a nursing strike and a grouchy nurse's poor reaction sent me into a raging tailspin. I remember the details of it all like yesterday but it's also like a part of a hazy dream; or nightmare.

I'd like to think I'm here for a reason. Alone in my thoughts, especially in the middle of the night,  everything gets rehashed. In 2014, with social media, Facebook, Twitter the internet, we're all THAT much closer and instantaneous.  I know what you're thinking as soon as you comment or click the Like button. Even while doing or saying what we think is right, none of us knows for sure. A heartfelt comment and a shared link translates differently for each individual. A misplaced Like; a disaster.

I'd like to think that I've learned so much from what I've experienced. I'd like to think I've grown over this period of a year and nine months and that my emotional and spiritual IQs have gained a few points. Some nights I can't sleep so I toss and turn, grinding my teeth and eating my heart with worry. What did I miss? What did I overlook? Many times it's worry over not acknowledging or personally thanking each person in my life who is here, who has shown me kindness. I receive so much. Some of them wish to remain completely anonymous and I cannot publicly thank them. Ever. 

As I thought this through and became entangled in thinking and thanking, for the first time, I realized that the only difference between thinking and thanking is the "i" or the "a". One letter. It's so easy to overlook one tiny detail and have that be the absolute end of everything. Cancer is also like that. One tiny cell can be the beginning or the end. It's that easy and dangerous to miss one tiny thing. I'm living a life that's open ended and unknown, and that's my unveiled truth because I have cancer but perhaps it awakens somebody because they don't have this cancer, this constant reminder. Maybe you do or you will or maybe never. I hope it's never. But maybe I can help remind you of that, of how precious each moment really is and that's why I'm here? I don't know but I'd like to think my suffering has a purpose.

Most of my friends are so humble, I may never get the opportunity to even know who to thank for certain things. To my friends and community who organize and host tehilim reading (reading of psalms) for me every Friday night, thank you! Thank you to the founders of Tehilim groups and a Shmirat Lashon group (guarding the tongue from gossip) that are organized and filled with people who both know me and never met me. Thank you for the hafrashat challah and prayer evening that filled a house from end to end with women. Thank you for sharing my story via Facebook and other social media, creating a network of prayer around the world. I missed running in the Jerusalem Marathon this year and many people ran in my honor, with my recovery in mind. I want to thank one of my best friends, who does so much for me and my family, and her son, for raising money for Tishkofet as a Bar Mitzvah project. Tishkofet honored me by allowing me to be Team Leader again, this year, for the Jerusalem Marathon! Another dear friend and her son led the way with a huge teal banner with my name in pink letters!  Yet another friend completed her first marathon and carried a #happylanche sign for me!  I received a 10K medal and a Marathon Completion medal from two great guys.  Just one week ago, my friends organized and hosted a shiur (lecture) given in name of praying for my full recovery, which I sorrily missed.  Friends and neighbors keep us in their thoughts and prayers every single day and there's a constant flow of caring and loving messages and gestures. Friends and acquaintances send us meals, flowers, gifts. Gifts I don't deserve. I admit, all of the attention, prayers, love, and care reminds me of how blessed I am and I've been able to shift gears and keep on going even at my lowest low. So, I'll try not to think about it too much... but I never want to forget about the thanking. Thank you so much to each and every person in my life for being here in every way that you are!

And a Pink Guitar

I decided on Tuesday, after receiving news for the second week straight that my blood counts were too low for chemo, that in two days time I would be getting my chemo no matter what. The first week, my white blood cells protested and the second week, it was my platelets. I had a count of about 51,000 (normal is between 150,000-450,000/mcL). I asked my oncologist, What can I do to increase my platelet count? The answer: Nothing - just wait, only time can heal it. But I don't have time!.... I cannot come back here next week! Pessach (Passover) is coming! So I asked, May I come back and try again on Thursday, in two days? My oncologist looked at me with a tilted gaze, the kind eyes twinkled and he said, It's very unlikely that your blood counts will recover in such a short time but if you're willing to come back here, I'll do what I can to make it happen. David and I left cognizant we'd be back in less than 48 hours. I was deflated knowing we were giving cancer the advantage again. Come on blood! Stop betraying me! I need to be treating this, not letting yet another week go by without chemo!

The next two days were a bit somber. There really isn't any way to force red blood cells to proliferate for the purpose of taking chemotherapy drugs. I already begged my oncologist to, "just give me a transfusion or something to make my cells behave," but that's not an option. Blood transfusions are to save lives in critical situations. If chemo is administered after a transfusion, the cells are decimated. It's like trying to contain sand in a sieve... completely futile. By Wednesday night, I was a complete mess. Even though I'd prayed and willed my bone marrow to comply, it might not have been enough.

On Thursday morning, I woke up with an extra jolt. We flew through the morning routine and arrived at the extra busy Oncology Day Ward by 8:40 am. I was pumped. Suddenly, I knew I'd be getting chemo and I was happy about it. A couple of hours later, we received confirmation that my platelet count had gone up to 93,000 which, was just enough to receive treatment!

Me Tali

While enduring the usual waiting around, I was uplifted with company of women I'd met along my life journey and my cancer journey and reunited with in the Chemo Lounge. My room mate, R., from my last surgery, L. from the cancer retreat, and an old colleague from my days of working as a physical therapist. Coincidences don't exist, so when I meet people I didn't expect to see, I'm honored; I get excited. Tali, a special soul, and a longtime NICU nurse, 1 floor up, came to visit me too. Sometimes, I withdraw into my own bubble at chemo and I can't really socialize with the other patients. Other times, I speak a lot with the other oncology patients and it really inspires me and gives me strength. Thursday was a good day. We made it into a really happy day in the Chemo Lounge at Shaare Zedek Medical Center... and there was even a Medical Clown. We finally signed out after 2:30 pm, with an appointment in 21 days time. I'm free!

dancing

This was my first time getting a dose of Gemzar only. I did receive a reduced dose due to the trouble with my blood counts so I have no idea what to expect. How bad will I feel? I hope not too bad but I really don't know. Shortly after arriving home, we had a surprise home visit, organized by my brother, Eli, and his wife, Briana and accompanied by my DH, my mom, brothers, SIL, nephews, niece, our children...... Rabbi Shlomo Katz! My brother, Eli, and R' Shlomo go way back to yeshiva high school days in Raanana and California days.

R'Shlomo Katz & Maya's guitar

Friends for about 20 years. They share many memories and one of an infamous friendly basketball game with Matisyahu about 8 years ago...  Strumming on my daughter, Maya's pink guitar, R' Shlomo agreed to cover his friend, Matisyahu's amazing song, One Day. One Day is a family favorite, especially for my son, Zachariah, and the lyrics speak to me - today more than ever. #happylanche