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Monday, March 25, 2013

My Own Personal Exodus

As we approach one of my favorite holidays of the Jewish year, I am compelled to view my own journey as a personal transition from the slavery of illness into the arms of good health and blessings.

In a matter of hours, Jewish People around the world will sit down and break matzah. I have the great honor and pleasure of hosting my entire immediate family including my husband and five children, my parents, four of my five brothers (my youngest brother has to stay on his base in the army) and their wives and children. Tonight, as we tell the story of our ancestors' slavery and release form Egypt, and celebrate the transition from slavery to freedom... I am especially moved by the contrast of feelings I experienced last holiday.

Last year, at this time, I felt a shadow of my current strength and self. The thought of preparing for the holiday was enough to keep me in bed with the covers pulled tight. Exhaustion and a general feeling of discomfort and lack of luster plagued me. Signs that I will never overlook again; feeling full without eating much, abdominal pain and nausea, but mostly immense unexplained exhaustion, were the whispering signs of ovarian cancer rapidly growing in my body. While I suffered along for quite some months, the final sign that something was wrong, for me, was blood. That final sign delivered me onto the doorstep of medicine, diagnosis, and treatment. Blood has obvious associations with slavery, and I cringe at the thought of what our ancestors went through as they endured beatings and they bled. I cannot overlook the symbolism that blood holds... of freedom. On the night before the Jewish People left Egypt, they were commanded to slaughter a sheep or a goat and to smear its blood on every door post of Jewish homes. This was to be a sign that the plague of the death of all the first-born sons of the Egyptians would not affect any of the Israelite homes. Shortly after that, our ancestors left Egypt.

In no way do I claim to be great or worthy of such a wondrous journey as prolific and  meaningful as the greatest story in Jewish history; the Exodus! I believe that every person lives their own personal Testament, their own Torah. This is mine and I feel great in publicizing the miracles that G-d has given me today, in this world. Tonight, as I sit down with my People to drink the red wine, the symbol of our blood and our freedom, each and every symbolic food on the Seder plate will come alive. The power of the symbolism that each of the foods displayed will not be lost on me. The bitter herbs and the charoset, the egg and the bone... all symbols with dual meanings that embody both slavery and deliverance to freedom! The whole point of the Seder meal is, as the wise scholars  have told us for generations, that we should tell the story of leaving Egypt to the point where we actually see and feel ourselves personally leaving Egypt!  Egypt symbolizes slavery on every level; spiritual and physical, material, and psychological so eventually and climactically, we strive to break out of all of them.

It's clear beyond doubt what my personal Egypt was this past year. I feel so blessed to have been carried out of Egypt feeling more alive and strong than ever. What better way to come up close and personal with the story of Exodus and my ancient roots? There are many symbols in life that we can embody and LIVE through modern day deliverance from slavery to freedom. These symbols, whatever they might be, can be an inspiration. This year, I will raise my glass and unchain myself from my own personal Egypt. May we all be blessed with inspiration from whatever symbols move us to release from our own personal slavery and deliver us to freedom in this world and the World to Come.

Thursday, March 7, 2013

Wednesday, March 6, 2013

Living Sincerely - Jerusalem Marathon

Last Friday (March 1st), was the magnificent marathon in Israel's capital - JERUSALEM! The experience of running in the 10K at the Jerusalem Marathon was possibly one of the greatest events of the year for me. I started planning about 6 months ago, around the time that I started chemotherapy treatments. I knew that I wanted to raise money for an organization close to my heart and I set my goal; to complete the 10 kilometer race alongside my family and friends. Six months ago... March, 2013 seemed like a distant dream.

my bro, Levi, carried me thru
As the weeks passed, marked by one chemo after the other, I began to worry about my physical ability to participate in and complete the 10 kilometers through the very steep hills of Jerusalem. In the end those worries were put to rest and the excitement and anticipation took over - sucking out any remaining doubt. Accompanying me on the day of the race: a film crew of high school girls making their final project movie, my husband, David, and our two eldest daughters, 4 out of 5 of my brothers, Eli, Matt, Levi, and Josh, Team (Erika) Tishkofet, my running partner, Joules from Ohio, and many many friends who came to cheer us on and participate in the outstanding atmosphere that is the very spiritual and unique Jerusalem Marathon.  The morning started out very chilly, shadowed by dark clouds and a few rain drops yet as we moved along the course, the sun peeped out and shone down on the thousands of people who came to run through the ancient streets of the Holy City. The hills were not smaller than I'd imagined. Everybody talked about "those hills" leading up to the race day and those hills did not disappoint... still feeling them in my muscles nearly one week later. My brother, Levi, landed in Israel from a business trip in London, England mere hours before the race! Levi not only paced me the entire time but he ran ahead to snap photos and take video, making me (and everyone around us) laugh and smile... chanting and cheering as we ran through the tunnels. Bystanders lined the streets almost throughout the course, some holding encouraging signs, giving out high-fives. The city went all out on making sure the atmosphere was festive with clowns on stilts and live bands playing music. There were reportedly 20,000 participants running from 58 countries around the world!
Joules & me at the finish line

My running pace has never been very fast. I'm in it to win it... not for the speed but for the distance. If I can keep going that's all I need to make it worth it. While the race was joyful and fun, I admit, it was a relief to make it to the final kilometer and cross the finish line with my friend, Joules, who came all the way from Ohio, to run in the half marathon in my honor. Melanie Lidman, of the Jerusalem Post, wrote an article featuring us in last week's Friday JPost "In Jerusalem" section which can be viewed online here. I'd also like to thank Jeremy Wimpfheimer, of DJW Consulting, for his exceptional PR work for the Jerusalem Marathon.


DH, 4 of my bros & me
Running reminds me not only that I'm alive and well, breathing and sweating, but also WHY I'm here. I'm here, on this Earth, to enjoy the many wonders and gifts that G-d created. We live in a time where men and women of all religions, faiths, colors, and nations are privileged to participate in running side by side through the streets of Israel's capital city, Jerusalem! I'm overwhelmed and moved with euphoria and joy to be a part of this flock, this club that unites.  Phenomenal, sums it up! Thanks to the many wonderful, brave, running enthusiasts who signed up and joined my team, running for Team Tishkofet - Life's Door! Due to the generosity of our friends, family, and sponsors, we succeeded at raising over 25,000 shekels that will be used to fund programs directly serving Tishkofet patients. That's what I call living sincerely!

Monday, February 25, 2013

Front Page Ynet Story

The popular Israeli (in Hebrew) on-line news website, Ynet, published an article about my dad and me and our journeys with cancer and our participation in the upcoming Jerusalem Marathon. Thank you Jeremy Wimpfheimer, head of international PR for the Jerusalem Marathon, for helping make this article happen.

Here's a Google Translate version.

Cool!

 

אב ובתו חולים בסרטן - ולא מוותרים על המרתון

אריקה לאנג נלחמת בסרטן השחלות. אביה, מרטי, נאבק בסרטן המעי הגס. על דבר אחד שניהם לא מוותרים לאורך חודשי הטיפולים: הריצה. בימים אלו הם מתכוננים לרוץ את מרתון ירושלים. "הריצה משכיחה מאיתנו את הסרטן", הם אומרים
פורסם: 25.02.13, 08:46
"הייתי עוברת טיפול כימותרפי ביום ראשון וסופרת את הימים עד שארגיש קצת יותר טוב כדי שאוכל לצאת לריצה. לרוב זה היה בשבת בערב, שבוע אחרי קבלת הטיפול ויום לפני הטיפול הבא, הייתי נועלת את נעלי ההתעמלות, מפעילה את נגן המוזיקה בקולי-קולות ורצה. כשרצתי, שכחתי את הסרטן".

אבל לאנג לא ויתרה. כפיזיותרפיסטית היא מכירה את האנטומיה של הגוף ובכל פעם שמיששה את אזור הבטן התחתונה הרגישה שמשהו לא תקין. "אמרתי לבעלי שיש לי תחושה שאני חולה בסרטן השחלות. אפילו היו פעמים שהרגשתי שאני הולכת למות".
בגיל 37 חשה אריקה לאנג שמשהו לא בסדר, כאבי הבטן, הנפיחות ובעיקר העייפות הגדולה אותתו לה שהיא צריכה להיבדק, כמו גם ההיסטוריה הרפואית שלה שכללה גידול לא ממאיר בבלוטות הרוק, שהצריך ניתוח לפני כשנתיים. "ניגשתי לרופא המשפחה", היא מספרת, "ופירטתי בפניו על הכאבים, על העייפות שפשוט היתה בלתי נסבלת, אבל הוא אמר שסביר להניח שהעייפות קשורה בעובדה שיש לי חמישה ילדים קטנים".
אריקה לאנג ואביה, מרטין גרוגין - לא ויתרו על הריצה גם בזמן המחלה
אריקה לאנג ואביה, מרטין גרוגין - לא ויתרו על הריצה גם בזמן המחלה



Read the full story here.


Cancer is a Crab

Something phenomenal was revealed to us at the Friday night Sabbath table... It began as a discussion revolving around differences and similarities in Hebrew and English. My husband and our guest, Joules, and our five kids, and I were enjoying a festive Shabbat dinner. We were explaining, to our guest from America, that cancer, in Hebrew, is, "sartan", which is also the same word for the creepy-crawly creature we often see at the beach, otherwise known in English as a crab. Our friend, Joules, mentioned, Cancer the Crab, the Zodiac sign, and my 7-year old son, Zach, had a very profound and serious question.

With a pained and very concerned expression on his face, my son slowly got the words out, "Ema (Mommy), how did the crab get inside your body and make you so sick?"

With the remarkable discovery of a most serious idea, there was a longish pause of complete silence at the table. I had eye contact with the other two adults and we all had the same twinkle of tears in our eyes. In that silent pause, I wondered if my young son had been harboring that thought about an actual crab making me so sick for the past 7 months... and soon discovered that he had. It wasn't too far fetched a notion for his four siblings either. No one laughed. No one moved. Everyone patiently  awaited my answer.


Sunday, February 17, 2013

Welcome to Erika's Party

I finished chemotherapy a month ago. Over a week ago, Thursday, I had a CT scan and thank G-d it was normal. I believe I can officially say that I'm in remission. Party time, right?  To quote the respectable website, cancer.org, "Cancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. This is often the case with certain cancer types, such as ovarian cancer, chronic leukemias, and some lymphomas. Sometimes cancers that have spread or have come back in other parts of the body, like metastatic breast or prostate cancer, also become chronic cancers."  Not to be a party pooper or anything but I'm NOT taking this morsel of information lightly. I'm going to live like I'm cured from cancer and yet be on guard for the rest of my life. There are no reliable screening tests for ovarian cancer. Some oncologists rely on repeat CT scans and blood tests for the cancer marker, CA-125.  Based on studies like this one, apparently there isn't any benefit to treating ovarian cancer recurrence BEFORE symptoms occur which has some oncologists opting not to order CT scans and CA-125 marker testing. This is the boat I'm in. It's scary to be told that your future monitoring and treatment is based on your reporting (or lack of)  symptoms. If I feel symptoms, my doctors will order scans and blood tests... otherwise I'm free to go.

In most ways I feel like celebrating. I want to publicly thank G-d for the many miracles He gave me. I want to thank my husband, David, for never leaving my side, and my mother for practically moving in with us and caring for me and our children, and my dad, brothers and SILs for dropping everything in their lives to be here for me.  I want to thank my dear friend, Elana G., for her constant friendship and love and organizing our many friends and neighbors generous outpouring of meals throughout my surgery and chemotherapy. I'm thankful for my family in Israel and abroad for their constant love and support and prayers. I have such a warm and embracing community here, in Bet Shemesh, and scattered throughout the Holyland and all over the world! I've never once felt alone! I thank Gaby for bringing me onto the Moon and my Pink Moon Lovelies for welcoming me onto the Moon! I'm thankful for every single person in my "real" and "virtual" life who have taken it upon themselves to pray for me daily. Some of "those on-line strangers" have become my new best friends! I thank my surgeon, Professor B, for saving my life! I thank my oncologist, Professor C, for his constant care and patience that goes above and beyond my expectations. I thank G-d for giving me all of these gifts - the love and kindness that flows without end... and for the biggest gifts in my life, my five children, who I hope and pray I live to see grow up into their own independent people.

I feel like this journey is only beginning... Some people see cancer as a scary monstrosity that destroys and kills everything in its path. Not me. Like all things in life, cancer too is G-d's creation. Why was it sent my way? I don't know but at the very least, cancer is the biggest wake-up call to come into my life. I pray that I live "until 120" though I'm just as content to have THIS day, right now, and hopefully many returns of the day, and I'll leave it at that - for today....

Thursday, February 7, 2013

Time will fly whether it's fun or not

"Sweet dreams, pleasant dreams, I love you, good night... I'm just going to close my eyes," I used to call out to my parents every single evening after they tucked me into bed for the night. I was very young when I started saying it - maybe 4 or 5. I was scared that something "big" would happen and they wouldn't want to wake me... so I pretended I wasn't going to sleep... just closing my eyes. The older you get, the quicker time flies. When I was little, my age in the single digits, each year was a lifetime. When a month was an entire "stage" of development, a birthday was always in Forever as was Chanukah and summer vacation. Despite the countless warnings from weathered adults who claimed, "Before you know it...", I quickly devoured 10 years at a time and grew up. Adult is a concept that I still struggle with.

In September and October, only mere months ago, I couldn't skip forward to the image of Future Me, here, now, in the "after". The passage of time should be the photo next to the definition of, cliche. Time flies. I'm excited to have arrived at THIS moment. I can muse again! It's a luxury to daydream and reflect without the cloud of chemotherapy hovering. Going through weekly treatments, you can easily forget what "normal" feels like and when it starts to come back it's exhilarating. My magic is coming back. I want to go go go and never stop. I want to black out the cancer part and just run with everything I've learned on this journey and never look back. Once you have cancer in your life it doesn't pack up and go away. It stays. So, I've learned. There's a chance that I'll never have to treat cancer ever again yet I'll need to think about it all the time. Being a survivor means keeping a constant surveillance and staying on guard, keeping your dukes up and ready. I will not live my life in fear AT ALL... but it's always there. Once cancer comes in, it's there for good and you don't get to turn your back on it. Ever. That's why they say, keep your friends close and your enemies closer. That's how you win on your own terms.

Don't fear what the future might bring and risk wasting the Now. You know how many people have tried to lend me support with, "You never know... you could step of the curb and get hit by a bus...."??? Hmm. Despite being trite and completely the wrong thing to say to a person going through a life-threatening illness... it's pretty accurate! Nobody knows how long they have in this Life. That's the whole truth. Stop wasting time and get on with it! That's my pearl of wisdom at this fine moment. Live, love, learn, and be happy. It's all good... EVEN the bad so don't waste it because someday, in the not so distant future, it has to end. That's not sad... it just is.

Wednesday, February 6, 2013

Inspiration Documentary

Living sincerely with cancer & inspiring others...


Thanks to my wonder twin Joules for sharing this vid with me.

Thursday, January 24, 2013

I'm Not a Statistic

Stage IIIc Ovarian Cancer... that was the official diagnosis, back in July, when I had surgery. Do a Google on that and you'll get loads of webpages. At first I didn't read them. I followed one school of thought which I'll lightly call, the Ostrich School of Head in Sand. I didn't want to know the statistics and I didn't need to know because I was busy enough having major abdominal surgery and recovering and then chemotherapy took over my life and focus for a good while but now what? What's next? EVERYBODY is asking me that. It's a very obvious question. So, am I done? Have I earned my freedom? Did I pass?

First, I officially graduated from the Ostrich School and if you can't handle knowing, please skip this entire blog post. I'm serious. Don't read it! For those who want to know, according to Cancer.org about 3 in 4 women with ovarian cancer live for at least 1 year after diagnosis. Almost half (46%) of women with ovarian cancer are still alive at least 5 years after diagnosis. Between 70% and 90% of all women with ovarian cancer, at some point, have a recurrence. Women with advanced (stage 3 and 4) ovarian cancer tend to have multiple relapses and undergo several rounds of chemotherapy. For women diagnosed with ovarian cancer, the risk of recurrence varies based on multiple factors, including the stage at diagnosis. About 68% of women diagnosed with stage III ovarian cancer, who had successful surgical outcomes, will have recurrence at some point. [Citation: Ovarian Cancer National Alliance (www.ovariancancer.org) and SEER Cancer Statistics Review, 1975–2005, National Cancer Institute. Bethesda, Md., http://seer.cancer.gov/csr/1975_2005/]. If ovarian cancer is found (and treated) before the cancer has spread outside the ovary, the 5-year survival rate is 94%. However, only 15% of all ovarian cancers are found at this early stage. Please stop asking me if it was caught early and treated...  No. Stage IIIC is advanced, spread, and the 5-year survival rate for what I had is 35%. Now you know. 

I met with my surgeon yesterday. I asked him if he thought I was cured and he said, no. ...But but but I was NED (no evidence of disease)! He explained that due to his actually having been inside my body during the surgery and his having a vast amount of experience he hopes that I'm cured but the reality is most cases like mine relapse. I appreciate his honesty. You might be asking or want to ask me why I'm writing about this? Because, I want everyone who comes in contact with me to know. This is why I'm not having a party to celebrate the end of chemo. This is why I'm happy yet careful. I'm celebrating and I'm thankful and yet I'm not going to take anything for granted. It's wonderful to live each day as a brand new day... coined, "Living Sincerely" by wise cancer survivors. Excited to be alive and planning a bright future yet still very aware and mindful of my reality. It's fragile.  I've graduated from having sand in my eyes and ears. I'm fully aware of my situation and that's bringing me to a very safe and happy place... closer to G-d and closer to my family and friends. It's okay.

What's next? That depends. It's impossible to plan these things... (I give you permission to laugh). I decided early on to live on the assumption that I am not only lucky but miraculous. I'm not a statistic because, like I've said before, you're either 100% alive or 100% dead and I know which one I'm choosing if anyone asks. I have a LOT of work to do. Staying alive is a full time job. Breath in. Breath out. I choose happiness! Whether it's for 1 year or 100... I choose to live each day as happy and meaningful as I can make it... for me.

Monday, January 14, 2013

Where's My Prize?

Yesterday, I completed my final chemotherapy treatment. I don't know what I expected but it wasn't that. When chemo ends, it just ends. Well, that's how it goes in my case - a very lucky case, I know. I had a successful surgery back in July, and the chemotherapy was prescribed to knock out any cancer cells that dared to linger or have the chutzpah to rebuild cancerous empires in my body.  There's this tiny invisible person inside of me saying, "Okay, so you finished 5 months of chemotherapy. You're done. What you you want?!! A prize?" Uh, yeah - damn straight I do! Where's my certificate of completion? My extended warranty? I want the laminated card that states my achievements and a declaration... I want the lifetime guarantee; signed, stamped, and sealed with a golden emblem. Where's. My. PRIZE?

The clock gets reset and we start something new; follow-up. A CT scan here and a check-up there. I actually flipped out. I cried. I shook with emotion. My questions and demands don't really have Human answers. Not the fair kind. I was forewarned by my oncologist that it would be a process and I should have listened to his gentle kind words. I left the oncology day ward feeling empty and lost and even a little bit doomed. There's no modern day miracle test to detect ovarian cancer or recurrence. No "ovarian-oscopy". No smears. No definitive blood tests. Like the primary disease itself, the main hope for early detection is slightly short of an act of divine intervention. Picking up on the slightest symptom and being able to identify it is the only hope second to being cured, of course. I've reached the point that I aimed for from Day One of the diagnosis; remission. Life goes on.

Speaking of prizes and life....

After a long and emotional day including chemo and some unrelated drama, I drifted off to sleep with my subtle worried thoughts finally taking a rest. At around nine thirty at night my phone sang loudly- a call from my SIL (Sister In Law). Her waters broke! ...How quickly can I meet them at the hospital for the birth? Within minutes I was dressed and out the door! I arrived at the hospital, in Jerusalem, parked the car and RAN to find my brother and SIL. I watched, in complete awe and amazement as my SIL gracefully and so naturally directed strength and faith into birthing her precious baby daughter. Just after 1:00 AM, I was blessed with one of Life's most exquisite moments as my brother and SIL shared their intimate birth with me. It was the first time I ever participated in a birth that didn't involve me becoming a mother. Seeing two people, who I love so much,  bring their daughter into the world is the ultimate climactic vantage point of G-d's greatest gift. What a beautiful, miraculous gift Life is! 

There is no prize and there are no promises. There are only gifts - every moment, every single day. I completed chemotherapy. My own journey took me from wondering about my own life and its fragility,  a successful surgery, through an up-and-down roller coaster ride beyond even the cliche's wildest imagination... to the perfect, miracle of my newborn baby niece being born into a room filled with love and hope. Love and hope for now... and G-d willing a wonderful future.



Wednesday, January 2, 2013

The Antonym Of Lonely

In sickness or in health, it's wonderful to be the opposite of lonely. According to a quick Google-researching, the "official" antonyms of lonely are: befriended, loved, and unlonely, which, doesn't really seem like a real word but I'll take it.

Lonely. The thought of alone-ness -- loneliness. My heart and attention have been very drawn to focus on the excruciating truth that exists all around us. I see it in peoples eyes. I hear it. You can feel it across oceans or from across the street; via any medium - telephone, e mail, and especially in some of the most supportive online groups and social media.  Being alone seems to happen equally to people who aren't physically alone.

My inner self has been whirly-whacking (also not a real word) around for the past few weeks in some kind of a personal hurricane. I've been angry, happy, depressed, hopeful, sad, and defensive BUT never lonely. All of my people are still here, even the ones I might have yelled at or said harsh things to in my focused haste to keep my head from rotating right off of my body. The storm might still be raging, it probably is, but I'm coming to my senses. I've seen a lot of sadness. I've heard and read a lot about loneliness.  Other people's loneliness has grabbed me by the throat and throttled me into clarity. What's the huge and final revelation? Being the antonym of lonely saves me from myself. Living life, day to day, when life is on auto-pilot,  who has the time to feel lonely? When crisis hits, whether internal or physical, THAT'S when it can grab you and hold you down. I realize how it's possible to lose sight of the light at the end or the list of goals that were set and then fall off the path... and how important it is to hold onto all the people around you; sometimes physically. Listening. Taking moments. Not fighting anything - not even cancer. Slowing down and just being. Just living. Just existing. Unalone. Unlonely. Loved.

Monday, December 24, 2012

Forever Young

In the middle of the night between December 24th and 25th, 1969, the clock on the oven in grandma Edith's house stopped.  43 years ago, my grandmother, Edith, lost her life to breast cancer.  The clock in the Grogin kitchen froze at the exact hour. She was only 40. In a time when there wasn't much hope or success at treating, let alone curing breast cancer, she left behind a mourning family including my dad, 18,  and his two young brothers aged only 14 and 9.

My grandmother was named, Ehta, and I too was given the Yiddish name, Ehta, in her blessed memory. I was the first grandchild and the first grandchild that grandma Edith never knew. When I was born, it seemed right to name me after her. Grandma Edith is the young and beautiful lady in the black and white photographs with the perfect smile that seemed to invite you to come closer.  She was the wife and mother who everyone adored and she never grew old. I remember the year that my dad became older than his mother. Now, at 37, I'm probably the same age that my beloved grandma Edith was when she became sick.  I wish I knew more about her. I wish she was here and I wish I could change what happened to the beautiful precious family back in 1969.

I grew up knowing that my grandmother, Edith, was a loving and devoted mother to her three boys. They were her life. I grew up knowing and seeing how her illness and her death effected my grandfather, my dad and my two uncles. The loss of a mother is something that never goes away. My heart aches for my grandmother Edith, for the years she missed and the milestones she never reached. My heart aches all the more for my grandfather who lost the love of his life. Nothing adequate can be said for the loss that my father and his two young brothers suffered.  This is where I connect with my grandma Edith today. I see in my heart, the dying mother saying goodbye to her three young children. I see three boys suddenly without the stay-at-home mom who raised them.

43 years later, I'm mourning my grandma Edith -  forever young, forever beautiful, forever beloved, and forever missed.



Wednesday, December 19, 2012

Dexa Is Bad... mmmmkay

I'm obviously having a hard time. I admit. I have had the MOST AMAZING journey. I'm so thankful and grateful. Unfortunately, I did have a bump and a pause for two weeks but that happens with almost every patient in chemo some point along the way. I fell in between the cracks though. I've had 5 different chemo nurses instead of one or even two... And now in my last treatment, I was even given  steroids when I understood I wouldn't be getting them. When I reacted, the response felt like such a slap. I'm especially upset because it's completely uncharacteristic of the usual care I've seen here. Most every nurse I've encountered has shown utmost patience, care, and respect. In my latest, I just feel like a number. Not an individual. I voiced concern about treatment as an individual.

After realizing I'd just received a bag of Dexa-methasone before a Taxol treatment AFTER being told previously that I don't need cocktail drugs before receiving Taxol, I asked the nurse why I needed it. Her response was, "You got Dexa because you demanded it."

My response: "I don't demand things. I'm a patient here who takes interest in my treatment. I ask questions, I want to make sure I understand what's happening in my treatment."

Nurse's response: "It says in your medical file that you demanded Dexa even though you don't need it. You know Dexa is bad for you. There are serious side effects."

Me: "Listen, I've had some very bad issues with nausea after treatment and I've expressed fear about dealing with it. You connected the Dexa but you didn't ask me about my reaction to the last treatment. How are we supposed to know if I need it or not?  I had no idea it said that in my chart and it was written by another nurse, why not just ask me how I feel before giving it to me especially if you think it's bad for me?"

Nurse: "You demanded it. It's in your file. Do you know there's a nurses strike going on for the past two weeks? We're understaffed as it is and not only do we not have enough nurses to deal with our  regular stress, today we have double the usual patients AND the ER stole one of our nurses to help down there. I shouldn't even be working today, I should be on strike!"

Me: "Well that explains why I'm getting Dexa. I'm sorry about the strike, and I support the nurses 100%. I'm getting chemotherapy here and I feel that I've been bounced from nurse to nurse and not really explained this issue with the Dexa. It really bothers me that I'm getting a bag of steroids if I don't need them just because a nurse wrote that in my file... I don't understand it."

Nurse:  We're overworked... we don't have time... blah blah blah
 


Tuesday, December 18, 2012

Don't Know When I'll Be Back Again

In July, 2012, I was thrown into a new reality and I dealt with it in the only way that I knew how. I had to find the meaning in it. I was gathered up into spiritual arms and carried for the past 5 months on a cloud of faith, euphoria, love, and desire to be the strongest woman to ever win the fight. I felt heightened feelings of happiness, understanding, and love for many months. I reacted with physical strength and resistance to pain and side effects of poisonous chemotherapy drugs. I thrived on the fight and found meaning where I never thought I'd need to look.

Just over two weeks ago, my magic shattered. It all came crashing down and I haven't been able to breathe the same or smile the same or laugh or accept or inspire.

I spent a lot of time in the last couple of weeks trying to analyze and understand what happened. What final straw broke my spirit? I'm surrounded by love and supported by friends and family yet I completely lost my footing with my medical care providers. Lack of communication, lack of interest, and plain bad chemistry has left me completely vulnerable and feeling anger and sadness that I never expected to experience... to the point that my blood is protesting. I haven't been able to recover. I'm stuck yet unwilling to be pulled all the way down.

Maybe it was unrealistic to believe I could conquer all these losses and go through chemotherapy without sinking to an excessive low at some point? Now that I've been home from my reality-vacation for over two weeks, I've decided it's time to leave. If only I had a ticket.

Tuesday, December 4, 2012

No Go Chemo Take 2

Yesterday, I was supposed to have a chemotherapy treatment that was postponed due to low blood counts. While some of my red blood counts came up, unfortunately all of my white counts were lower than the previous week. I was told that my body can't handle the dense dosage. Perhaps this will mean that I will only have two more chemotherapy sessions - instead of 6.

The early morning rush that I've come to accept as my weekly chemo morning routine is part of the unpleasantness that goes along with the whole cancer/chemo thing. It's part of the process and you have to make the best of it. I'm okay with rolling with the punches and keeping a shiny happy attitude about it. As of yesterday, I'm completely aggravated and provoked. What's getting me unhinged at the moment isn't even directly related to cancer or chemotherapy. I missed two consecutive treatments without any follow-up in-between.  Now I'm in a supposedly dangerous situation that I can't even deal with because there's an unfortunate disconnect between the hospital that provides and decides my care and the health care system that pays for it. While the financial coverage has been excellent and covers my expenses for drugs and chemotherapy 100%, I'm being forced to invest my entire day in chasing down approval for a shot of Neupogen which I supposedly need in order to restore my currently non-existent immune system. In doing so, I've spent needlessly risky time standing on lines in germ-infested clinics and pharmacies full of coughing, sneezing, and spluttering men, women, and children.

During this I've encountered a long list of people trying to help and genuinely working to get the approval and yet 4 hours later... clinics and pharmacies are now closed and I still don't have the approval or the shot. I cannot believe that a patient undergoing chemotherapy with nearly nonexistent resistance to germs is expected to run around like this!

Right now, I question and doubt everything about my treatment and I'm sure that's not a good thing to be doing at this stage and especially not after missing two sessions of chemotherapy in a row. I feel like my shiny, happy persona and image of strength is partially responsible. Sometimes being "strong" gets you un-worried about and overlooked... apparently. Perhaps being bedridden and dying of pneumonia, contracted from my severe neutropenia would get me urgent care and recognition? Only time will tell.

UPDATE: as of 14:30 I have the approval

UPDATE 17:30: Thank u to each and every person who took the time to read, for caring, and taking the time to write. I'm keeping things real. My blog is a very therapeutic outlet for me and I share raw emotions on it. Thank G-d everything has worked out. I never waver in my belief that everything that happens in life is l'tova (for the good). Having said that, I'm a survivor and not a victim. When something happens to me, I'm not a bystander and I take charge. Baruch Hashem this way of life keeps me extremely happy and upbeat and when I'm down... It leads me back to the path of happiness every single time!

Monday, November 26, 2012

Chemo's A No Go

I could feel that something wasn't quite right. A little out of breath, lightheaded, and congested. I knew I wasn't going to be able to get chemo today. I could barely climb the stairs... I knew something was up.

My blood counts came back and it's a no go. WBC, neutrophils, RBC, hemoglobin, and platelets are all in the trash. I need to build them up before I can get my next chemotherapy.

Maybe it's so I can attend my son's first grade letter party tonight? Or so I can enjoy my birthday this week? Who knows?

Next week... Same time, same place. Hard to believe but we cancer survivors actually need to pray for chemo sometimes....

Wednesday, November 21, 2012

Fake It Til You Make It!

Why is that bald, nauseated, chemo chick still smiling? Is she faking it... ???

Faking that I'm a cancer survivor going through chemo?
Or faking that I'm actually this happy?

This morning, the one thousandth person asked me why I'm still feeling so well even though I'm in the middle of chemotherapy for stage 3 ovarian cancer. She asked how my voice is possibly this clear and strong.  I bet there are some people out there who don't get it. You might even want to slap me upside the head with all my jovial displays of happy, lovey dovey, giggling, dancing, singing, and running... no?

I feel that I need to clarify a few things here. Okay, fine,  I confess,  I'm faking. I cannot tell a lie. I'm a big fat faker. I have a lot to be scared about. I have valid reason to be mad, sad, and downright depressed. Chemo makes me nauseated, sick, tired and exhausted. I don't always want to get out of bed. I don't feel like driving, shopping, moving, or doing much of anything so.... yes, I fake it.

My motto to live by has always been, "fake it til you make it"!

Feel like a truck ran you over and you can't go on another day? SMILE!
Feel like a jerk today? Don't flip off that moron driver... laugh and smile at them!
Your two year old kept you up all night and you feel like the worst hangover ever? SMILE on! Dance it out!
Missiles flying overhead... run for the bomb shelter... and then laugh it out. Giggle like a crazy person. Just do it because it will make you and everyone around you feel good.

Jump outa bed, wash your face, get dressed... smile generously! Shoulders back, chin up, grin ON!

You know what... it works! Fake it til you make it.
It's free by the way so take it, use it, love it, and be HAPPY with me!

There's scientific proof that this method works... so please check it out.

Sunday, November 18, 2012

Fighting the External Cancer

It's been a while since I've posted and so much has happened. It's no secret that I live in Israel and I've been debating whether or not to write while I'm feeling so much stress and turmoil resulting from the current war going on here. How can I NOT write about it and still keep things real?

Today was possibly my most vulnerable and emotional day and it had absolutely nothing to do with cancer or chemo. Today I said an open ended goodbye to my youngest brother, only 19 and a soldier in the IDF, moments before he turned in his cellphone and headed off to protect our beloved Israel. Why am I crying? Where is the anguish coming from? Surely I've shown my faith in G-d and my belief that everything is for the good. Yes. I have full faith in G-d above. Losing complete contact with my purely good and precious young brother, knowing that our enemy on the other side only wants to kill and destroy makes my heart ache with an agony that is indescribable. Relating to my current situation, I see our enemy as a cancer. A cancer that only knows to feed off of its host, starving it, and slowly sucking the life out of it until death.

I have no control of anything in this world but myself. I can only fight the cancer within. I feel powerless, sad and angry about this external cancer that's threatening my family, my friends, neighbors, and country.

Please G-d! Please help us bring an end to this illness; this horrible cancer so we can live in peace. Please keep every one of our precious brothers and sisters (sons and daughters) safe and sound.

Friday, November 9, 2012

Life's Reminders

I can't help it... When I see a round pregnant belly or a newborn baby, my heart lurches. I know I'll never be pregnant again and I know that my baby is my almost three year old daughter. I remind myself how blessed and lucky I am. These daily reminders also remind me that many people aren't as lucky and thinking of my friends who yearn to have a baby also reminds me to pray for them.

I feel like I've had a lot of complaints this week. I've felt pretty awful. Everyone who sees me asks me how I am and I don't want to lie but then again I don't want to complain constantly either. So that's the reminder... For me, everyday, I have to remind myself how blessed and lucky I am and there is a light glowing for me at the end of the chemotherapy tunnel. Hold on, hold on! It will all be okay and I just know how much I have to be thankful for... That's what is saving me right now. Clinging to thanks and gratitude is actually a very humbling and important part of my journey... Apparently.

Wednesday, November 7, 2012

It's All Part of the Fight

Just so ya know... the fun doesn't last. It's day number two after chemotherapy and I really feel sick. Yes, we have amazing and effective supportive drugs that drastically reduce the miserable side effects of chemotherapy, and I'm sure I'm immensely better off than chemo patients 15 or 20 years ago. Having said all that, there are painful and unpleasant side effects and everyone I've encountered or shared with experiences something slightly different.

For me, there is a feeling of being tired, very tired. In my experience, the worst of the side effects is a constant threat of nausea. It comes and goes in waves. Initially, I didn't have bone pain but that was because I wasn't yet getting the Neulastim (bone marrow jump start) shot yet. I had my second treatment with Neulastim yesterday and that amazing, miracle drug causes a deep sore feeling in the shoulders, arms, hips, and thighs.

Anyhow, I didn't want to pretend that I'm always cheery, happy, spinning around. I do have my down, down, down days. I just know it will someday be over and not too far in the distant future, and I have to keep my chin up and focus on that. Even though the fun won't always last, there's always the next day to hope for. It's all part of the fight and even the down days are part of the climb on my journey.