Tuesday, September 16, 2014

Pillow On My Head

I'm a firstborn and amongst other things, I am a very light sleeper. Every sound, movement, or sliver of light stand to endanger my sleep. It's not a frivolous worry. I'm easily roused, in the dark of the night, by a neighborhood dog barking, a car honking, or a water tap dripping. It's a curse that can only be broken with earplugs... or a pillow.

During the war, I stopped wearing earplugs. I needed to be alert in the event of a missile attack. The only warning was the sound of the air raid sirens and I needed to have all my senses available. We were awoken in the night a few times. It was during the war that I started covering my head with a pillow. Most nights,  I cover my whole head and leave only a tiny space open, for air. It would be a scary sight to happen upon, I admit, however it's the only way I can sleep. Now that the war is over, it's conceivably time to break out the earplugs once again.

During chemotherapy treatment, I rarely had trouble sleeping, in fact, it was difficult staying awake. One time, I went to bed on a Friday and only woke up on Sunday! Anxiety enjoys the cover of darkness and especially relishes the silence that a soft pillow provides. Sleep disruption is a disorder that plagues the healthiest of people and is probably the cause of most of the grouchiness on the planet. We all have reasons for worry, anxiety, and some sleepless nights here and there.  Humans are the only members of the animal kingdom that experience insomnia. It's a Human condition. I say this with the complete conviction of someone who has always shared my life with cats and dogs and other mammals. They never stay awake longer than a few hours. How do animals drift away anytime, anywhere? We have a lot to learn from them.

Every morning, I jump out of bed and when I'm especially tired, I promise myself that I will be back again, in bed, as soon as I drop each child off safely at school and kindergarten... but of course I never do. Daytime is for accomplishment. I fear what I would miss. And so, another day of tasks and chores, dates and appointments ensues. Let the countdown begin... my pillow awaits. Only 12 hours or more to go.

Wednesday, September 10, 2014

Swinging From The Wonderland Chandelier

“My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere you must run twice as fast as that.”  ― Lewis Carroll, Alice's Adventures in Wonderland

Adrenalin is surging, the wind is drying my sweat, and my feet are a blur as they tap the blacktop of the road I'm blazing down. Aware of the drone camera, to the right, swinging my arms, picking up speed, whistle, whistle, beat, beat, smile at the camera on my left. Running like the wind. 1-2-3, 1-2-3 blink. 1-2-3, 1-2-3 blink. Whatever the song is, it's making me run faster. CUT! That's a wrap! I'm starring in my own music video - in my head.  Come on, you do this too, right? This is normal. Normal cool.

I must have mistakenly fallen down the Rabbit Hole and landed in Wonderland... Wait for me!  I'm back now. Babies that were just born are tumbling toddlers now. Why are all the pre-schoolers starting first grade? So many of the women are expecting their 4th, 5th or 6th child. When did I miss this joyful news? There are new faces. Old faces are missing. When did they move away? New families moved in. Israel has a new president. The war is over. I have a new name.  Don't you remember me? Alice? Alice? Who the &%$! is Alice???? No, it's, Ahava Emunah...... It's over, the Chemotherapy Saga Part II is done. I didn't have the time or space to dwell or ponder. I just had to suck it up and take it; head on. No questions. Taking a moment to pause for too long and my entire being would freeze, crumble, and blow away like powder. Chemo is over! Get over it! I just want to be normal. My normal.

"I can't go back to yesterday because I was a different person then."

“I'm afraid I can't explain myself, sir. Because I am not myself, you see?” 

People, all around me, are nodding their heads; up down, up down. I get so many warm hugs. There's so much love in every greeting! Yes, yes, so how's life? Kids back in school? Yes, yes, move along. Life is good. STOP that White Rabbit....?! Nobody knows what you're talking about, Alice.

“How puzzling all these changes are! I'm never sure what I'm going to be, from one minute to another.”

But... I just want to be  n o r m a l.



Yesterday, I dropped my youngest daughter off at her kindergarten and the teacher's assistant asked me why I didn't attend the asifat horim (parent meeting) last night? What parent meeting? She then handed me a form to fill out but I couldn't remember my daughter's birth date. I remembered the month, January, but for the life of me, I couldn't come up with the day or the year. The assistant watched me struggle to remember my own child's birth date. Surely I seemed like a mad woman to this lady who just met me.  Whoooooo arrrrrre youuuuuuuu? I'm Alice. I'm NOT mad. I'm just a bit lost.
“But I don’t want to go among mad people," Alice remarked.
"Oh, you can’t help that," said the Cat: "we’re all mad here. I’m mad. You’re mad."
"How do you know I’m mad?" said Alice.
"You must be," said the Cat, "or you wouldn’t have come here.”
 Finally, I decided to share that I just completed chemotherapy treatments and my mind fogs up sometimes. Ohhhhhhhhh. Relief spread across the assistant's face and she patted my back, "Refuah shleimah," she blessed me with a full recovery, "May you be blessed with good health". Thank you. Amen. I walked out and slapped myself on the forehead. Shivers, I feel like an imbecile.

“Would you tell me, please, which way I ought to go from here?"
"That depends a good deal on where you want to get to."
"I don't much care where –"
"Then it doesn't matter which way you go.” 

Outside, in the heat, in the sun and the air, that's where I'm most alive. Heart pounding, sweat rolling, and feet moving equals life! If I can move and breathe, I'm normal. I'm fine. With my music pumped up and the breeze on my face, suddenly Alice is back in Wonderland, breaking a world record. The cameras are rolling and the world is watching me on Mtv.... no, YouTube! Smile for the cameras! Thumbs up! My thick, naturally pink hair is blown back. I'm 5'10. I'm the first human to be given a lifetime warranty; Certified Cured of Cancer. I'm 36 again because the clocks got turned back. I'm starring in my life music video and everything is perfect, I mean, normal.

“Alice came to a fork in the road. 'Which road do I take?' she asked.
'Where do you want to go?' responded the Cheshire Cat.
'I don't know,' Alice answered.
'Then,' said the Cat, 'it doesn't matter.” 

What song is my music video? It might be, Happy by Pharrell Williams, or Call Me Maybe by Carly Rae Jepsen because those are my power songs that make my feet fly when I'm out there. Being honest with myself, Chandelier by Sia, minus the 1-2-3 drink, better describes my current mania.

          Party girls don't get hurt
Can't feel anything, when will I learn?
I push it down, push it down

I'm the one "for a good time call"
Phone's blowin' up, ringin' my doorbell
I feel the love, feel the love

1, 2, 3, 1, 2, 3, drink
1, 2, 3, 1, 2, 3, drink
1, 2, 3, 1, 2, 3, drink

Throw 'em back 'til I lose count

I'm gonna swing from the chandelier, from the chandelier
I'm gonna live like tomorrow doesn't exist
Like it doesn't exist
I'm gonna fly like a bird through the night, feel my tears as they dry
I'm gonna swing from the chandelier, from the chandelier

But I'm holding on for dear life, won't look down, won't open my eyes
Keep my glass full until morning light, 'cause I'm just holding on for tonight
Help me, I'm holding on for dear life, won't look down, won't open my eyes
Keep my glass full until morning light, 'cause I'm just holding on for tonight
On for tonight

Sun is up, I'm a mess
Gotta get out now, gotta run from this
Here comes the shame, here comes the shame

1, 2, 3, 1, 2, 3, drink
1, 2, 3, 1, 2, 3, drink
1, 2, 3, 1, 2, 3, drink

Throw 'em back 'til I lose count

I'm gonna swing from the chandelier, from the chandelier
I'm gonna live like tomorrow doesn't exist
Like it doesn't exist
I'm gonna fly like a bird through the night, feel my tears as they dry
I'm gonna swing from the chandelier, from the chandelier

But I'm holding on for dear life, won't look down, won't open my eyes
Keep my glass full until morning light, 'cause I'm just holding on for tonight
Help me, I'm holding on for dear life, won't look down, won't open my eyes
Keep my glass full until morning light, 'cause I'm just holding on for tonight
On for tonight

On for tonight
'Cause I'm just holding on for tonight
Oh, I'm just holding on for tonight
On for tonight
On for tonight
'Cause I'm just holding on for tonight
'Cause I'm just holding on for tonight
Oh, I'm just holding on for tonight
On for tonight
On for tonight

In my "reality", I'm swinging from a chandelier. I'm a (happy) mess and I'm holding on for dear life. I've got to run from this. I'm living like tomorrow doesn't exist. Holding on. Holding on. Holding on.
This is my normal.

“Who in the world am I? Ah, that's the great puzzle.”
― Lewis Carroll, Alice in Wonderland

Wednesday, August 20, 2014

Crossroads. Again.

It's really difficult to write an update about myself in the middle of a war. It feels self centered or selfish or just wrong. The war raged on. There was a ceasefire. Now, it's apparent that the ceasefire ended with missiles and rockets being launched in every direction, including a few at my neighborhood last night.

There are few things more despicable than cancer. One of them is terrorism. Living under constant threat of death and destruction and at the complete mercy of God and the Israeli Army and the Iron Dome is very stressful. It's not completely different from my own personal cancer journey. My friends, in Israel, will understand me when I describe that moment when the air raid siren goes off. Is that the air raid siren?! Everybody freezes in their tracks. Within seconds, adrenalin surges through your veins. You grab your children and you move as quickly as you safely can to that bomb shelter. You don't think! You just move! Once you're safely in the bomb shelter, you might have a moment to let out a sigh of relief, a nervous smile to reassure the kids, yourself, the dog. For me, my heart pounding uncontrollably, is the next experience, sometimes accompanied by shaking.  The siren ends and then we wait. Sometimes we hear and feel explosions. My body shakes. My heart pounds. After a few minutes, it's safe to leave the bomb shelter. When will the next air raid siren ring? We just don't know. That complete randomness, absolute uncertainty... well not so absolute. We kind of have a feeling that there will be more missiles aimed at us but we just don't know when.

I made it this far. Again.

I'm in remission. The tumors have shrunk or are undetectable. It's a miracle that the chemotherapy worked quickly and efficiently. I'm very very lucky. I have been at this crossroads before and nobody thought that the cancer would come back so quickly. I've reached the boundaries of medical intervention. Just in time for me to enjoy the good news, there were also plenty of snags along the way. A possible brain bleed that ended up being nothing more than an apparent stroke that left a little hole in my brain. A hospital stay, in isolation, when my blood levels completely crashed as a direct result of toxicity from the chemotherapy. A glowing, on the PET CT, in my stomach, that required invasive tests with inconclusive results. An ache here and a pain there that I'm reluctant to pay attention to. Okay, SHH! Enough! I arrived at this crossroads with plenty of reminders that it can and will be pulled out from under me at any moment - without notice. The powers of Oncology can promise me that we have done everything possible to give me the best chance possible. I'm cautious and I'm optimistic. The only option, right now, is to live. Live life like there's no tomorrow because who knows what will happen next?

New drugs are being developed, PARP inhibitors. Around the time of my original diagnosis, in 2012, advanced studies were just taking off. Now, a phase 3 drug trial with a powerful PARP inhibitor is well underway and I'm a participant. Only time will tell how lucky a participant I am as 2/3 of the women receive the active drug and 1/3 of the participants receive a placebo; sugar pills.

Am I cured? No. There's no cure. Treatment may cure some women with ovarian cancer that is advanced when it is first diagnosed. For most women with advanced ovarian cancer, or cancer that has come back after treatment, it is not possible to cure it. I'm a positive and optimistic person who needs to live in reality and be prepared for whatever life may bring so I'm very comfortable sharing this information.

We are at war. Nobody knows when the terrorists will strike but we won't give up! We don't stop living. The stress and anxiety might make us want to sit in the bomb shelter but that's not much of a life, is it? The terrorists will never win. Neither will cancer. It's a done deal. There might not be a cure but there's always a crossroads and there's always a choice.

Here I am again, Crossroads, you missed me and I'm back.

Tuesday, August 5, 2014

Pray for Peace - Prepare for War

Life in Israel isn't peaceful and carefree. The mood, on the street, is worry and sadness. While we are strong and have faith in our strength, the constant threat of rocket fire, air raid sirens going off at any moment, and the loss of precious human life is in the air. Today is the 9th of Av. This very date, on the Hebrew calender, Tisha b'Av, marks a list of catastrophes so horrific, for the Jewish People, it's clearly a day that is cursed by God.

It all began when the Jewish People were wandering in the desert. We had just left Egypt and experienced the miracles of the Exodus. We were just about to enter the Holy Land, Israel, however on the 9th of Av, we cried that we wanted to go back to being slaves in Egypt because our own spies reported that Israel was uninhabitable. That was back in 1313 BCE. Both the First and Second Temples were destroyed on the same day, the 9th of Av, in 587 BCE and in 70 CE. The Roman massacre of over 100,000 Jews at Betar also occured on the 9th of Av back in 132 CE. The Jewish People were expelled from England on the 9th of Av, 1290 CE, from France in 1306, and from Spain in 1492. The three weeks leading up to 9 B'Av are weeks of mourning and we also commemorate the loss of 6 million Jewish People who were murdered by the Nazis during World War II which, came to be after The Final Solution was approved, during the mourning period of Av, in 1941.

Today, is a National Jewish day of mourning and fasting and prayer.

Today, the People of Israel, the Jewish People, are experiencing a modern day awakening of what our ancestors in the desert, our ancestors in England, France, and Spain, and let's face it, all of Europe, most certainly realized. The world is not a welcoming place for a Jew. What is the difference today? The Jewish State of Israel and the IDF. What's the same? Everything else and God.

I know that there is one place, on the entire earth, where I belong, in a total area of 8,630 square miles, 290 miles in length and about 85 miles across at the widest point. Surrounded  by Lebanon to the north, Syria to the northeast, Jordan to the east, Egypt to the southwest and the Mediterranean Sea to the west, my only home, so small it could comfortably rest inside of Lake Michigan and is often compared to the state of New Jersey. I'm not here to discuss politics and I leave the judgments up to God. I embrace my smallness, as a grain of sand, on God's vast and wonderful beach. I know of good and I know of evil. I know of love and faith and happiness and.... I know of pain and suffering and sadness. I know of war and I know of peace. I know where I'm wanted and where I'm not. I pray for peace yet I'm prepared for war.

Tuesday, July 15, 2014

Hopefully it's Nothing....

Iron Dome takes out missile mid-air
In the past couple of weeks, I've been hoping for nothing. To some, that might ring pessimistic.  As missiles rain down on my country, air raids sounding off in every city of Israel, each of us prays and hopes that our home won't be hit. And if my house is hit, God forbid, hopefully it's nothing.... Hopefully we'll be in the bomb shelter and only the house will be destroyed. When the Iron Dome takes down a Gazan missile over Tel Aviv, hopefully it's nothing.... hopefully no one will be hit with shrapnel and injured, or worse.

On Thursday, July 3rd, I had my last chemotherapy treatment. Five days later, I began to feel very unwell and I spiked a fever. I called my doctor... hopefully it's nothing, but I had to go to the emergency room. My head began to pound with an excruciating headache and blood work showed my platelet counts were falling at a drastic rate. I needed a head CT scan, to check for a brain bleed, my second one since June 19th, when I had similar symptoms. Of course, once again, hopefully it's nothing.... and it was, no bleed! Thankfully!

I spent 5 nights in an isolation room, on the oncology ward, at Shaare Zedek Medical Center... hoping for nothing. Really, I was hoping my platelet count would go up along with my white blood cells, and hemoglobin, and electrolytes. I was praying to NOT need a blood transfusion.  I received a platelet transfusion, some Neupogen shots, IV antibiotics, and lots of electrolyte infusions. I became well enough and I went home. Something really bothered me about my release letter because in the summary, at the bottom on the page, it said something about a little lesion, in my brain. Apparently the little lesion, in my brain, was confirmed on the June 19 CT as well. Hopefully it's nothing. It wasn't there in May or March so obviously I'm worried.

How does one stop worrying at every single bump and twist along their journey? The first time the air raid sirens blasted in my city and we ran for the bomb shelter, I freaked out. It was unexpected. My heart pounded in my chest as I escorted my beloved young children, one by one, down to the bomb shelter. My breath was heavy, and I was scared. The second time, I was in the hospital, and all I could think of were my children, at home... were they okay? Would their babysitter get them to the bomb shelter safely? By the third air raid siren, I took my time to find my beret and put on my shoes before walking calmly to the protected space. My heart didn't race and I merely hoped it was nothing, I prayed no one would get hurt, that people would make it into the bomb shelters safely. Shortly after arriving home, from the hospital, the air raid sirens rang, and my whole family calmly walk downstairs, into our bomb shelter, I tried to make up a silly song about marching into the shelter. The kids bounced down the stairs. We took some smiley photos. We waited to feel the vibrations of the explosions, we listened for the "booms". I am not scared as long as I have my entire family around me, safely in the shelter. How does living through a war become so routine? It does, because we adapt. We have faith.

As the Iron Dome continues to take down hundreds of missiles coming our way, from Gaza, I look to the sky and imagine God's Great Hands shielding us from the blasts and the shrapnel. Every time, it's a miracle that so few people are physically injured. We are living through an unimaginable situation of rockets and missiles repeatedly falling from the sky, and we've managed to continue living around it. Okay, so we won't go to the beach because that would be crazy.... no bomb shelters at the beach! So we'll stay home and create an art project or bake or read a book. Thankfully, the army, the airforce, and of course, God, is taking care of us.

So, later I will have an MRI of my brain. I can only imagine what could cause the appearance of a lesion, in my brain, on the CT, twice. Hopefully it's nothing... but if it's something... surely I'll find a way to deal with that bomb too.

Thursday, July 3, 2014

When Is Enough... Enough?

How do we know when we have truly done enough? Tried enough? Studied enough? Spent enough time.... enough attention? Prayed enough? Given enough? Thanked enough? Cared enough?

Coming to the end of a very difficult week, in Israel, it's very hard to separate the emotions in my personal life from the feelings we're experiencing as a Nation. The soil is beginning to settle atop three freshly covered graves of 3 teenaged boys. As I type away, from the safety of my air-conditioned quiet home, my phone blasts Color Red alarms as missiles, from Gaza, rain down on the South of Israel. While three families and an entire country are in mourning, for the murders of three teens, there are so many questions and not enough answers. I admit, my own personal struggles with cancer and chemotherapy, as trying as they are, feel less important and urgent.

When is enough enough? There's a very thin line between not doing enough and doing too much... doing harm. The lines are covered. We can't see them. Is it possible to hope enough or hope too much? So many people are waking up to that reality right now, in front of my eyes. For some, the pain is too much. The anger is too much. For others, the pain is not enough. The love is not enough. It's hard sometimes to not judge. It's very difficult to be silent. With the internet, Facebook, Twitter, and instant media... it feels like enough is enough. It's all too much!

Last week, I reached my breaking point. I had had enough! My physical level of suffering, from the effects of chemotherapy, had reached the point of enough and I knew it was the end. I only told one person, my beloved husband, David. That same day, I received a call from my oncologist. He informed me that enough was enough. My body has reached its limit. The balance between killing cancer and killing me is blurry. In order to avoid causing permanent damage to my bone marrow and possibly killing me, the time has come to take a break from chemotherapy.  The tumors shrunk. Some of them are no longer visible. The chemo did a lot of good and now, maybe it's enough.

When the cancer came back, it reappeared in unusual places, deep inside my liver, next to my heart and vital arteries, and peppered throughout my abdomen. Stage 4. The cancer was fast and aggressive and progressed quickly. Thankfully, it also responded to chemotherapy quickly. We have no way of knowing if this was enough chemo. It's very unlikely that all of the cancer cells are dead. It's very unlikely that this is end of my cancer journey and therefore it's time to find another treatment that will hopefully keep me in clinical remission for as long as possible. It's time to try promising yet experimental treatment. Clinical drug trials offer treatments that haven't yet been approved and are therefore unavailable on the open market. The only way to receive treatment is to become part of a scientific study which also comes with the risk of NOT receiving any treatment at all - placebo which are made of sugar or some other harmless, inactive component.

Today, I received chemotherapy treatment; hopefully my last. Hopefully it was enough. It's time to rebuild my inner physical strength and recover from the physical effects of the chemicals that helped to save my life. As I try to internalize and heal the pain and horror all around us, here, in the Holyland, I draw a line directly to the heart of my own personal struggles. When is enough enough? If there's ONE thing I've learned on my journey... it's to love and have faith and there's never too much of those. Love and faith. Love and faith. Enough pain. Enough violence. Enough war. Enough anger, hatred, and mistakes....! We always have enough of those.

Sunday, June 22, 2014

I Am A Grain Of Sand

I am just a grain of sand,
Insignificant, plain, resting in His hand.
Rough and tiny, salty and meek,
My life, a blessing. My faith, never weak.

Life can flow, as sand, through a sieve.
Try to stop time, there is no reprieve.
I too fell through His giant fingers,
Painful landing, my immense faith still lingers

People ask day in and out, the same question,
Why you? Why me? What's the suggestion?
I have the answer. It's simple and right.
God is good - Love and Faith day and night.

I feel so blessed to know that there are amazing people, around me and out there, who are inspired by my journey. I'm just a grain of sand on God's endless shore. I'm just one of the billions of people here. I'm moved to tears..... I'm humbled and completely shaken to my core when I receive messages of encouragement from people I've never met or seen.

The other day, I was once again back, at Shaare Zedek Medical Center. It was Chemo Day - again. Again, something deep inside me said I wasn't going to be able to receive chemotherapy. Barely making it up the three flights of stairs, completely out of breath, we arrived on the 7th floor of the Oncology Day Ward - The Chemo Lounge. My head was exploding with the most excruciating pain I'd ever felt, since 3:00 am and my tears began to flow, uncontrollably.  My nurse gingerly accessed the port in my chest. She drew the vials of blood. I told her that I wasn't sure I'd be able to get treatment today. She expressed support and encouragement and offered me pain meds for my terrible headache. I went to lie down and I felt a little bit broken. A volunteer came to offer me a Reflexology treatment which, was so soothing in my state of, falling-to-pieces.

A while later, we received the news that my white blood counts were lower than ever. My red blood counts joined the party too and my hemoglobin is now sinking. One of the oncologists noticed that I was writhing in pain while waiting in the corridor. She brought me a red pill, one used against migraines. We discussed options with my oncologist. Concerns. Possible treatments. Blood transfusion? Head CT? More Neupogen shots. It was a very long day.

I received a phone call from my friend, P. She told me about a woman, a friend, who reads my blog. Her name is, Miriam, and she felt inspired, by my writing, to write a song. Some of the words are sad and most of them are touching and uplifting. The song is called, Faith. Knowing that Miriam was inspired to write this song of faith has really touched my heart and soul.