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.

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.

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. 

 

Ugh

 

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.

 

3-2-1... Blastoff!

Counting down... 1 more day til chemo...

Yesterday, I had the time of my life! My family came over and we had so much fun dancing and partying! Friends came and went all morning exchanging mishloach manot (gift baskets). The costumes this year were better than ever... so many of our friends dressed up the whole family with themes. I sure have some creative friends!

This morning, I received an e mail letter from Meuhedet (healthcare provider), letting me know that the drug, Gemcitabine, has been ordered and approved. "We are happy to let you know that your doctor ordered bla bla bla... and it's been approved bla bla bla... best wishes and blessings for a full recovery and good long life.... Blessings, Meuhedet". Is that only in Israel? I thought the wording of the letter was cool.

I'm restarting chemo tomorrow with a slightly different schedule... using the same platinum based, Carboplatin, along with Gemcitabine (Gemzar is the known brand name). The schedule is Carbo every 3 weeks and the Gemcitabine 2 weeks on 1 week off.

Gemcitabine is supposed to have less harsh side effects than Taxol... here's the list:

• Flu-like symptoms such as muscle pain, fever, headache, chills, and fatigue
• Fever (within 6–12 hours of first dose)
• Fatigue
• Nausea (mild)
• Vomiting
• Poor appetite
• Skin rash
• Allergic reaction
• Diarrhea
• Weakness
• Hair loss
• Mouth sores
• Difficulty sleeping
• Shortness of breath

When I did chemo last year it was different mainly because I mostly believed that it was a "mop up job". I wasn't one of the sad cancer stories. I was the exception - cancer free, no evidence of disease... just doing chemo as a precaution. It feels different and even disjointed now because we're deviating  from our plan. I felt optimistic about the high tech plan with growing my tumors in mice and then testing out the chemo on them first. Now we're testing out the chemo on me and I hope my skepticism doesn't hold any power over this course of treatment.

Last time, I knew the timeline. 6 courses (which became weekly dose-dense mid-treatment). Five months and then we're done! THIS time it's open-ended. We're doing a certain number of chemo treatments and then a PET CT to check if it's working to shrink the tumors.

Last week, I had a "procedure" to have a port "installed". So now I have a button to go along with my zipper (that's what I call the ovarian cancer surgical scar that extends from sternum all the way down). The port will make drawing blood and receiving chemo much easier. Getting the port-a-cath was not so easy. My intention isn't to whine and complain however if anyone reading this can be helped... that is my intention. I don't know if I'm just a big baby or if I overly attached myself to what many tried to convince me was "nothing". "It's such an easy procedure you don't even need sedation." "It's nothing." "Piece of cake." Well, only second to having 4 syringes of fluid removed from my pelvis WITHOUT any pain medication... it was the most traumatic experience of my life. Just one day before, I had a sigmoidoscopy and biopsies taken - no problem - no trauma whatsoever. The key... sedation. Even though I was awake and I remember everything said and done, I was relaxed, not scared and fully functional. Lying on a surgical table in a freezing cold operating room with sterile sheets draped over my body and face, strapped down, my body began to shake violently. I felt the repetitive jabs of the local anaesthesia needle going into my chest and I realized I was going to freak out!  I let everyone present know that... and was told that the sedation drugs aren't recommended because they're "poisonous" to my body. Really? As opposed to the herbal chemotherapy I'm about to receive??? I see no reason for any person in the Western World to have to go through that.  I hereby SWEAR (with all of you as my witnesses) that no syringe or knife wielding person will EVER touch my body EVER again without my permission unless they've offered me sedation. I eventually convinced them, after the first incision, that they weren't going to complete the procedure without calming me down first but not before a meltdown complete with sobbing and tears. Sedation might make you sleepy, forgetful, whatever... that works for me. It's so much better than traumatic memories which NEVER go away. ...and that's my message for today. MY body. MY decision.

See you tomorrow.... at chemo.

It's Purim! There's gonna be a #happylanche all over the world!

It's started! The pre-Purim shenanigans! The kids are all dressed up today in their costumes to celebrate the holiday of, Purim, at pre-schools, kindergartens, and schools all over Israel! It's such fun to go from school to school and see all of the brides, soldiers, princesses, warriors, lions, cats, and circus animals.... Funny masks, wigs, and make-up.

It's definitely cause for mass #happylanche activity!

At the beginning of the week, it was decided that I would start chemotherapy today. In the meantime, I had a portacath inserted into my chest and other medical tests taken care of. By midweek, my oncologist and I agreed that I should just enjoy the holiday... So chemotherapy is postponed to begin next Tuesday. Today I'm enjoying my pink wig and my אהבה (Ahava/love) shirt that my friend, Efrat, got for me on the day I changed my name.

Purim is the holiday of hidden miracles. G-d's name doesn't appear at all in the entire Megillah of Esther. The whole saga and breathtaking suspense unravels with G-d behind the scenes, yet hidden in name, while the entire drama unfolds. It's true... Just about every Jewish holiday boils down to the same point; They tried to kills us, The Almighty Above saved us, let's eat! We eat (and drink) to celebrate Purim but we also give food and money to the poor and deliver gifts baskets filled with treats to our friends and neighbors.

The main theme of Purim, or at least one of them, is the aspect of היפוך (hipuch- sudden reversal). The evil, Haman, had the gallows set up and ready to hang the Jew, Mordechai. What could have been a great tragedy for the Jewish People was reversed at the last minute, turning our story into one of the greatest ancient comedies of all time! ...ending with Haman, the Evil, dangling from the rope.

This joyful comedy isn't for one second lost on the Nation of Israel... Or on me. The month of, Adar, the Jewish month that hosts the fun and happy holiday, Purim, is a month of miracles! Purim is a celebration of the sudden reversal. A perfect time to pray for reversal.... Please G-d, hear my cries, my prayers! Please reverse the decree.... Of Cancer! ...and please bring me refuah shleimah (full recovery)! 

May we all be blessed and enjoy a peaceful and restful Shabbat around the world! May it be G-d's will to reverse any decrees of illness or death (chas veshalom) on me or my family or my friends or Am Yisrael!

Happy Purim!

My friend, Susie, made this giant AWESOME #happylanche hamentaschen for me! The Hebrew translates to: Happy Purim to the Lange Family, when there's love (Ahava) and faith (Emunah) there is joy (simcha). Thank you so much Susie!!!

Love & Faith

There are laws and customs that have been passed down for thousands of years on how to choose a name for your baby. Names are extremely important in Judaism. An individual's name is said to be like the direct line for a soul’s energy to enter the body.  We like to name our children after important people, especially biblical figures, and beloved deceased relatives.  A name is not merely a medley of letters put together as a convenient and trendy way to refer to someone. A given name is believed to be a definition of the individual and a description of his personality and a translation of their character traits. As far as I know, Erika, is a Nordic name and means, "eternal ruler", "one ruler", or  "ever powerful". I was always proud and happy to be, Erika (Ehta), named after my Grandma Edith, of blessed memory, who died appallingly young after battling breast cancer in her thirties.  In the case of tragic death, parents don't always choose to name their baby after that beloved relative or they add another name that will be used as the first name.  My Hebrew name, Ehta became controversial when I was first diagnosed with ovarian cancer. People, around the world, prayed for me, using my Hebrew name, which also happened to be my mother's Hebrew middle name and lots of chaos and questions came out. We consulted with a rabbi and decided to ask people to pray on my secular given name, Erika. Not my Hebrew name, Ehta.  My dear childhood friend, D. a devout Hassidic woman, asked her husband to consult with their rabbi, a learned and respected Torah Giant. After consulting, D. begged me to change my name. In my community, we call our kids by their given Hebrew names. Erika doesn't quite fit my religious circle but I always clung tightly to the name my parents gave me, even after immigrating to Israel where NO ONE is named, Erika. Erika was me. I cherished it.

When we knew that the cancer was back, confirmed in December, discussions about my very unHebrew name were rehashed. Once again, close friends and family members, unconnected to each other, questioned whether I should change my name. I began to question it. My dear friend, E.'s  husband met with a great rabbi who said I should change my name, to a specific Biblical name, which I just didn't connect with. "We'll speak with another great Rav, " my friend assured me. There was one name that I'd always been excited about and had wanted to name one of our daughters. "No way we are going to give any of our kids a Hippie name," said my darling husband. My 2nd PET CT scan was on Sunday and a few hours later, the tip of the iceberg crashed through the calm of my seemingly healthy and less stormy reality. It's a true kindness that I don't have to wait for days to know whether the results are positive or negative. My oncologist tries to minimize my anxiety and emotional torture whenever possible. I went home with some bad news and knew I'd get more detailed answers in two days, when the official radiologist report came through. One thing was certain, the cancer proved to be spreading quicker than we hoped and if I don't begin treatment, my future on this Earth is unlikely. We received an answer directly from an extremely well respected and learned Torah Giant that I should choose a new name that my soul connects with.

When we met again with my oncologist, we learned to what extent the cancer had advanced. Throughout my abdomen and pelvis, in my liver and chest wall and in multiple lymph nodes far and wide. What's on offer? Chemotherapy. Carboplatin and Gemcitabine. No way!!! I made up my mind. No chemotherapy yet! I want to wait for my mice... I don't want to be the mouse! Chemo failed last year and I don't want to go through that again!

Love and faith... are all I have.  If I decide not to take chemotherapy, I might die. Chemotherapy might not work either or it could work and I might live. It's my choice and yet I have no control of the outcome. ONLY how I choose to deal with it today. Will I cry? Be angry? Will I still be happy? Laugh? Celebrate? Dance? That's what my #happylanche is all about. Will I continue to cling to Hashem (G-d) and have faith at ALL times?

My sister in law, Briana, invited me to attend a shiur (a class) in Nachlaot, Jerusalem. A very spiritual class with Rebitzin Emunah Witt and I had my own unique experience. All the months of debating over my name suddenly converged on an impulsive decision as I meditated, with Briana's hand in mine, on love and faith and faith and G-d and love, achdut (unity) and a whole lot of faith through the worst test of my life. We are all Earthbound but we hope to get to Heaven someday. Whether I'm 38 or 120 when I go, what do I want to leave behind?

 photo credit: Nechama Verter sent AFTER I changed my name!

Ahava = Love

Emunah = Faith

We took a long and spiritually guided journey to the Kotel (Western Wall) and on the way MANY wonderful things happened.

I washed the great stones of the Kotel with my tears - crying and begging G-d to please help me. 

And then, I left Erika behind. 

I want to be known as, and called, Ahava Emunah. Whether I go or I stay, that's what I want to be and emulate, and share. AND now, I have a new strength to face the next step. Chemotherapy AGAIN.... and spread love, and have faith that no matter what, it's all for the good. It will be okay.

Progression

Progression. I've always had this wonderful definition in my life.  I progressed from childhood to adulthood. I made great progress with the choices that I made. My successes and my failures have been a blessing. Progression. We encourage our children to progress at every stage of development. We hope and we pray for progress in every avenue of our lives. Progression financially, progression with the peace process, progression with projects... hey, I'm always relieved when there's progression of movement on the roads... especially in rush hour traffic! Progress, progression... it's always good stuff!  Passing successively from one member of a series to the next; succession; sequence. You can have progression in any situation! Usually when I think of progress or progression, it's obviously in the positive sense. There's no direction but forward in life. Look back occasionally, check your rear-view mirrors but ALWAYS keep your focus on moving forward... keep your eyes on those rear-view mirrors for too long and you are going to crash.

Why am I meditating on this word, Progression?!

What about progression in treatment? And progression of disease..... 

The cancer seems to want to move forward right along with me. I have progression of disease. Not ordinary or small progression. I do things BIG. So my cancer progression is not getting stuck in rush hour traffic or waiting for my mice.

In the meantime, I'm not waiting around either... I'm continuing my #happylanche. I can either keep moving forward or I can get caught up in the misery of this terrible news that the cancer is spreading and progressing. Music and dancing have fabulous powers. So does laughing. When I sing or dance not only do I laugh but everyone around me does too (you haven't seen me dance or heard me sing if ya don't know what I mean :-)

THIS is progression of happiness:
  

And this is another great version filmed in Tel Aviv-Yafo ISRAEL 

Please join my #happylanche by using the hashtag  #happylanche on Facebook and Twitter. It does make me happy!