Wednesday, April 23, 2014

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.

Thursday, April 10, 2014

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. 

Sunday, April 6, 2014

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!

Friday, April 4, 2014

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!

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

Sunday, March 30, 2014

Blown Away

I have many reasons for sharing my journey... some of them I'm only discovering as I go. Spiritually and emotionally, I've received so much strengthening of the soul (chizzuk in Hebrew) from so many people near and far. I'm genuinely convinced that part of this ghastly test is also a huge blessing. One of the great things about sharing my journey publicly is, not only the loving and supportive feedback I receive from people who tell me that my writing has helped them through a difficult time or inspired them in some way, but also the kindness that I gained from people who were complete strangers one moment and have either remained so or have come into my life to stay.

When I first started chemotherapy back in September, 2012, one of the side effects I suffered from was painful ulcers in my mouth and throat. I received many suggestions from readers of my blog on how to help relieve them. The two things that helped were a combination of sucking on ice during chemotherapy and the other thing came from a woman named, Carol, who I've never met in person via my friend, Suzanne; Kanka mouth gel. I was so touched that Carol took the time and expense to send me the mouth gel which isn't available here, in Israel. Fast forward to Chemotherapy The Sequel. I'm back in chemo and once again dreading the side effects. I received an offer of mouth sore medicine that is still in clinical trial from a stranger, A.H. that for whatever reason I wasn't able to follow up on yet I'm moved by the kindness of a stranger. In the meantime, my friend, Tzippy, spoke with her friend, Moti, and the rest of the story will blow your mind. For the past 7 years, a scientist in America, has been working on a solution to the terrible mouth sores that chemotherapy patients suffer from. These mouth ulcers have been known to be so painful that simple things like eating, drinking, and even talking are impossible. Many medicines are available on the market but there's never been one that completely adheres to the sores or heals them. It's very problematic to get medicine to remain inside the mouth over time, for obvious reasons. Well, a miraculous medicine has been successfully developed and it is currently available in the United States on a very limited and exclusive basis as it has just been approved and is gradually making its way onto the market.  Last Tuesday, accompanied by 2 men I'd never met before, some of it came to Israel for the first time. I met these two strangers, a man named, Moti, who heard about my story from my friend, Tzippy, and the other, a paramedic named, Sim, who heard about me from Moti. A bit of a sting operation went down, orchestrated by people who had never met me, and within 24 hours, including a Fed-Ex trip from Florida to New Jersey and a VIP seat on a plane from the United States to Israel, Sim, the paramedic, Moti, and 2 bottles of this expensive, prescription-only medicine arrived at my house! Sim, the paramedic, was so enthusiastic about being able to deliver this miracle medicine to me, he and Moti drove directly to my house from the airport! This medical product is incredible! Thankfully, the sores that I have from the first treatment
of chemotherapy were mild so far in comparison, however after using the mouth gel only one time, I barely noticed them at all! The effect of the mouth gel was so powerful, I think I can confidently stop sucking on ice throughout the actual chemo treatment knowing that I can rely on the mouth gel. The level and amount of kindness (chessed) that went into bringing such a change, a solution, to one person, one stranger... I'm just blown away! When I think about it, I don't know what is more incredible.... the actual medicine or the story of how it arrived. I hope that this will only be the beginning of this story and that somehow this mouth sore cure will be made available both in America and in Israel, and around the world, to cancer patients who suffer so horribly from painful mouth ulcers during chemotherapy. That would send an absolute #happylanche to so many people who truly need it. I hope that's going to happen. I believe it will.

Wednesday, March 26, 2014

The Power of Love

Chemo was a no-go yesterday. My blood counts were too low but I left the Chemo Lounge feeling very very high....

After my first treatment of Carboplatin and Gemcitabine, I felt physically very bad for 3 days. By the end of Shabbat I had such a burst of energy I just wanted to tie on my running shoes and get outside and I did. Obviously nobody looks forward to receiving a therapy that's going to make them feel so sick. As advised to me by, Dr. Garcia, of USC Norris Cancer Center, I'm following a fasting regimen each chemo session. I begin the fast on Sunday, for 48 hours before chemo. I continue the fast on the day of chemo and for 24 hours after chemo finishes. That's 4 days of not eating. I drink plenty and can eat up to 200 calories per day which I limit to celery, lettuce, clear broth, tea, and water. It's not easy but it's also not horrendous and it helps me feel that I'm contributing to weakening the cancer cells and that's an empowering feeling. I can weaken cancer! Even so... I absolutely dreaded the countdown to chemo and had a pretty strong feeling that my blood counts were going to be low. The real test is walking up the stairs to the 7th floor Oncology Day Ward. If I'm puffed and out of breath, I know chemo is not happening.

Tuesday morning, I had blood drawn from my port and then we sat down to wait. Surrounded by David, my friend, Gaby, my SIL, Briana, and friends, Dena and Jeremy, we made small talk and then Gaby told me she'd prepared me a gift. Part of the gift was in a box and the other part was in her voice. My friend, Gaby, has the voice of an angel and after asking the other patients if they minded, she looked straight into my eyes and belted out, The Power of Love, by Frankie Goes to Hollywood. I don't know if anyone got through the song without tears. I think I might've squeezed Gaby's hand the whole song. Then the young woman, A., next to us, asked Gaby if she would sing some Celine Dion for her father, Z., who was also receiving chemotherapy. Gaby sang a few songs for A.'s father and tears rolled down his face as he hummed along. Everyone in the Chemo Lounge seemed to enjoy the impromptu Gaby concert including my beloved, Professor Cherny, and the nurses.

A while later, one of the nurses came to let me know that my blood counts were too low for me to receive chemotherapy and I might have cheered loudly. I know that I need treatment for cancer. I know, but the day wasn't wasted. We brought some happiness and light to the ward with Gaby's voice. That's The Power of Love.

Unfortunately the video recorded without audio... so I added the voice of, Gabrielle Aplin.

Thursday, March 20, 2014

Where Is Love

I packed my bag; Ipad, chemo quilt, insulated cup for ice. Bright and early, my DH, David, and I returned to Shaare Zedek Medical Center for Tuesday morning chemotherapy. 
Nobody wants to return to the Chemo Lounge for Part II, the chemo sequel. All the familliar faces; the nurses, the doctors, the secretaries, the volunteers bringing drinks and chocolates.... Every single person working in oncology is there to help save lives and lessen the pain of those suffering through the disease that is Cancer. It's probably one of the most difficult places to work. A place where NONE of your customers wants to be. Everyone has a life threatening illness. Everyone is probably at an all-time low in their life. I have a choice - I can be miserable and mean or I can put on a brave face, and find reasons to laugh and smile.
I have the most supportive and loving husband who holds my hand and accompanies me to every single appointment and treatment.  When I realized I would have to start chemo treatment again, I was so angry! I could've punched a hole through a concrete wall... but I had nobody to be angry at... 

On my first morning back-to-chemo, I was greeted with loving hellos from every nurse and doctor and secretary on the ward. My sister (in-law), Briana, met me there. I don't encourage anyone to come and spend time in the Chemo Lounge. I feel guilty bringing anyone there who doesn't need to be. 
  Briana is the kind of sister you always want around.  She IS sunshine - which would be a cliche about anyone else but her. I was (guiltily) VERY happy to have Briana with me most of the day. Before the chemo drips arrived, I was lavished with reflexology and healing from one of the volunteers. ...And then there was, Sarah Zadok, a close friend of mine, who drove all the way down from the Golan. With David, Bri, and Sarah, the chemo day flew by and we even laughed (a bit too loudly) quite a few times!

One of the highlights of my day was when my oncologist sang his way into my room with, Where Is Love. You know, because my name, Ahava, means, love....  At the end of the day, my friend, Orit, surprised me with a visit and lit up the room with her smile and humor... around the same time large group of medical students came to visit my room to speak with me. That was very special and inspirational.

My Facebook, Whatsapp and Twitter were buzzing all day with words of love and encouragement.

Chemotherapy aside, it was truly a fun day!  As we left the hospital... a huge group of medical clowns happened to be pouring out of the main building - WHAT?! Yes! I don't know what hit me but it was hysterical laughter. The long and tiring day climaxed with medical clowns; adults, all women, dressed in the silliest attire and red noses. Wow.

The day after was pretty awful. It's something similar to having a very bad stomach virus. Achy body, nausea... you want to stay close to your favorite bathroom and not much else.

Today, is a day for celebration... our second child's 11th birthday! It wouldn't be right or fair to let the day go by without properly acknowledging the miracle of our baby girl! So, I got myself dressed, and my mom, Briana, and I went shopping for birthday presents. We pulled together a bouquet of birthday balloons and made the day pretty fine considering how physically awful I'm feeling.

Where is love? I never have to look very far.