Holy Stitchers

Holy Stichers Roxy, Elisheva, Katie, Rachel, Sorcha

 Six talented and spiritual women, who happen to be my friends, decided to make me a chemo quilt. In a very short amount of time, my friends, the Holy Stitchers: Elisheva, Katie, Michelle, Rachel, Roxy,  and Sorcha chose fabric, designed, cut, pieced, sewed, bound, and quilted this very special quilt! It's pink, green, and warm, and covered in hearts and XOXOs.... I'm in love with it and it will be a constant companion during my chemotherapy sessions.

Not only was this quilt made especially for me, it was made with love and intention. Each of my friends prayed for me while they labored. Each woman meditated love and healing thoughts into every thread and stitch which I'll soon wrap around me in a less friendly setting; chemotherapy.

I love my quilt!

As I study my quilt, I can see that my friends put so much thought into each of the 16 squares. All pink and green just like me! Flowers and hearts just like I love! Anyone who knows me knows I sign everything with, "XOXO", and my quilt has it! I love the hamsa, a symbol which comes from the Hebrew word “hamesh,” which means five (represents the five books of the Torah, the hand of Miriam, some believe it wards off the "evil eye"...). It's a symbol that I connect with and my quilt has it!My quilt is covered in brightness and happy shapes, symbols, and colors.

My chemo quilt inspires hope. It was made by such special, strong, smart, spiritual, and loving giving mothers. Women. I love my friends and I will always cherish this very special gift. I cannot adequately express how warm this quilt makes me feel both inside and out!

I Walked Out Much Lighter

Today I took a heavy load off my shoulders in preparation for chemotherapy. On Monday, I spent the day at the hospital getting my pathology report, genetic counseling, and seeing my surgeon and getting everything ready for chemotherapy. On Sunday, I'm scheduled to begin my first dose of Taxol and on Monday, I'll get Carboplatin. What a huge load to deal with and think about! I had an "orientation" with a chemo nurse. She told me about what to expect and worry about and one of the things was my hair. She recommended that I get a much shorter hair cut which I'd already thought about.

This morning, my dear friend, Lorien, took me to the holy city of Jerusalem to get my hair cut. I chose the Ronen Hazan hair salon both on recommendations from my friends, Debbie and E. and the fact that they work together with Zichron Menachem.  My friend, Debbie, met us at the salon. I was greeted by, Yisrael, one of the salon owners in the warmest way. He told me that he was very emotional and honored to participate in my hair cutting donation to children with cancer. He took such time and care with my hair… I ended up with such a cool and funky hairdo! My friends and I posed for pictures and laughed and ended up having such a fun time - my hair "loss" ceremony turned into a real party. Today is a celebration. I took the heavy hair weight off of my shoulders… the weight of wonder and the unknown and dreadful feeling of my hair falling out turned into a photo op of silly poses and a fun new hairdo which I'd never dreamed of daring to try in the past! I'm gearing up. I feel ready to get on with things… let's get this chemo "thing" happening! I want it behind me. I feel like I'm ready to put my dukes up and fight. Let's go. Bring. It. On.

Turning Loss into a Gift

my braid from 2009

The next step on my journey with ovarian cancer is chemotherapy. I don't know exactly when that is scheduled to begin yet. I have a day's worth of appointments at Shaare Zedek Medical Center  next week and I expect to have a lot more information then.

In the meantime, the mind works overtime. I admit, I have a lot of anxiety. I don't fully know what to expect. How will chemotherapy affect me? Will it be terribly difficult or just slightly difficult? Will I be holding onto the toilet bowl for dear life? Will I spend days on end in bed with exhaustion? Will I shrink and shrivel or will I bloat up? Will I feel like a living corpse or will I just feel like a bad case of the flu?

There's a whole list of side effects that can accompany the drugs I'm about to be given; Taxol and Carboplatin. The common side effects are: fatigue, altered taste and sensation, bruising, fever, infection, anemia, mouth ulcers, stomach upset and nausea, and last but not least, hair loss. The less common side effects are way way nasty and scary so I'm not even going to address those yet. When you think about the appearance of  a person with cancer, the first thing that might come to mind is: baldness. My oncologist already told me to prepare for that eventuality. From what I've read and been told, people being treated with Taxol and Carboplatin can expect to lose their hair about 3-4 weeks after beginning treatment. I've been covering my hair, for religious reasons, for nearly 12 years of married life. While losing all of my hair and becoming completely bald isn't going to be fun, I think I'm pretty well prepared for the experience - I already wear scarves everyday!

I was speaking with some friends the other night and the conversation turned to the subject of donating hair to a wonderful organization called, Zichron Menachem. Many of my friends' daughters (and sons) have grown their hair long and then had it braided and cut to be made into beautiful wigs for children with cancer. My friend, E,  just had the experience via her daughter, Y, who donated her hair. She told me that after having her hair cut, she felt exhilarated and happy knowing that a child with cancer would get to enjoy her lovely blond hair. Y is only 11. What a wonderful idea! I decided that I'm going to have my very long hair, which is down to my waist, braided and cut too! In doing this, a child with cancer will gain something beautiful out of my loss…. and maybe it won't even feel like much of a loss anymore. I'm actually pretty excited about giving away my long locks! Something to look forward to. Who's joining me?

An OMG moment

There's never a convenient time to have an illness. Usually my kids and I celebrate summer vacation from school. We especially enjoy daily trips to the pool or beach and we often take day trips to the zoo, museum, or other indoor or outdoor parks. Kids in Israel are in school through June. Vacation only begins July 1st and two of my kids went to camp for three weeks. By the time we were really available for full days of summer fun, I discovered I was sick. I feel like my diagnosis and surgery really cheated my 5 children out of the fun summer mama they usually have. Obviously it's not my fault and I have zero control over the situation but mother's guilt certainly isn't bound by logic or sense. Luckily I've been blessed with very loving family and friends who give us a lot of help at home.

For the past 3 and a half weeks, my mom has been coming and going but mostly staying. She took them to the pool and a few of my friends have also taken some of the kids. My two youngest daughters were taken into a backyard summer camp for two weeks which they loved! My two eldest daughters have had some really fun outings with friends and even a couple of sleep-overs. So… really it hasn't been the worst summer ever for them.

I miss the beach. I miss taking the kids and my mom knew it was really eating at me. I had only taken them once this season. So… even though I'm recovering from major abdominal surgery, my mom said she'd agree to take us to the nearest beach as long as I promised not to lift a finger. I wasn't to help pack the lunches and snacks, I wasn't to help load up the car, and I certainly wasn't to help schlep the stuff from the car to the shore. My mom did everything. All I had to do was get dressed and get in the car. Great. What a beautiful day at the beach!!! The weather was perfect; clear skies, not too many people, and the water was glorious. Watching my 5 children on the beach is something special. My kids love the water and show no fear of the crashing waves. A and Z went off in search of crabs and came back with  a tiny baby one. Little H and E were hysterical in the waves. A and M went out in the surf and barely left the water all day. I too enjoyed soaking up the sun and swimming in the waves.

Sometime in the afternoon I began to feel very weak and lightheaded. While trying to focus on the location of each of my kids, I suddenly realized that I was losing control. The ground was slightly fluid under my feet and the shoreline seemed to swirl before my eyes. My mom noticed and told me I should lie down on the beach blanket. I got annoyed. I need to watch my kids! I have everything under control! My eyes fluttered and I felt the sand sinking. OMG. I'm not in control. I'm not even able to take my kids to the beach on my own. OMG. I'm a "Cancer Patient". OMG! I shuffled over to our beach bag and practically collapsed onto the blanket. I covered myself from head to toe in towels and immediately drifted into a deep sleep while my mom continued to supervise my children on the beach. I slept. It hit me like a rip curl. OMG.

Zoom Out

Every step on Life's Journey is an important piece of our Full Life Picture. One of the things I often tell mother's who come to me for breastfeeding support is to think of your life as a big picture. When we have a problem; the baby won't latch on and nurse! Or the baby won't sleep through the night! All we can see is the zoomed in version of our picture - crisis, suffering, pain, worry, fear, anger… or whatever. Sometimes we're so focused in on the pixel of the photograph that we don't realize what a small part of our life it actually is. Kind reminders like, if you address a need, it will go away, or thinking of a difficult stage in a baby's life as it is: a stage, that will pass in days or weeks and before you know it you'll be yearning for those not-so-easy baby days.

Many people have approached me in these past few weeks with very personal stories of their own pain, illness, or suffering. When you hear that a young woman is diagnosed with stage 3 cancer it's very shocking. I've been very open and shared my story and in doing this, I've opened a door and put down a welcome mat for many people. I feel like I've been given a gift. Cancer can make you feel alone or betrayed. One might think, how could my body betray me like this or worse… how could G-d?! Up close, in my Life Photograph, my Big Picture, this Cancer diagnosis crisis could have been and still might be many things. For now, I've really zoomed out. I see the cancer as a tall mountain along my path that has to be climbed, as a painful and trying challenge. In my Big Picture I see the peak too and along the way there are also beautiful things, like people I love who care about me, my family, my children, my friends, and community. The jagged cliffs on my mountain are also covered in beauty; flowers, G-ds creations and G-d's miracles. Having this Big Picture in front of me also allows me to see a future, hope, a cure.

My Journey has a lot of unknowns. I'm only at the beginning and gearing up for the battles I may have to fight. Before I go to war, I also need to mourn. Here is where perspective comes in. Every person and their dreams. What am I mourning right now? Well, for one, I'm mourning the loss of my fertility and the loss of ever experiencing childbirth and bringing another child into our family. That is my up close view, when I zoom in… that's what I lost. I must also mourn with my youngest daughter, who is still a nursling. She and I cherish our moments of calm and serenity each day and very soon I will have to deny her that pleasure and peace. Chemotherapy drugs that will make me feel very sick in the short term but perhaps save my life in the long… are far too toxic to risk continuing breastfeeding. That makes me sad. This is a stage and it too will pass in days, weeks, or months, and we will move on.

Stand back, take a picture. Zoom out.

Never Say Never

I'm pretty sure I won't try scuba diving. I love the sea, the water, the sand, and everything that goes with it but I'm pretty, pretty, pretty sure I won't actually do it. Anything that involves holding my breath or going so deep beneath the water's surface that I'm dependent on a tank of oxygen on my back makes me anxious. I'd rather jump out of a plane thousands of feet in the air, climb Mount Everest, or ride the most daring roller coaster ever built. I won't say, "never", but I'm pretty darn sure. Never, never, never… never say never. I can easily tell you a few things I never thought I'd do or experience. I never thought I'd have a tube coming out of my nose. I never thought I'd experience a sponge bath. I never thought I'd have to inject myself with a shot everyday. I never thought I'd lose my uterus and ovaries….

I had my first experience with donating blood when I was about 18. I remember filling out the forms and thinking about how my liquid red blood was going to save some anonymous person's life. The procedure felt very meaningful and important. After that evening, I donated blood regularly; during my army service and throughout university. About every 3 months, when the bloodmobile came around, I pushed up my sleeve and saw my warm blood going into sealed bags… to save lives. I don't remember feeling queasy or afraid of the needle. I always felt slightly energized right after. It was exciting to feel that I had donated something so precious as "liquid life". Years later, while working as a corporate fitness instructor, at a large company in California, I had the privilege of organizing a blood drive with the Red Cross. It's been an important cause in my life for many years. I never thought I'd need to receive blood. I never thought I'd be a recipient of a blood donation. I never ever imagined I would be the one saved by that precious liquid life. But I was.

Hours after my surgery, my blood pressure plummeted. The doctors ordered repeat blood tests and my hemoglobin continued to fall. I appeared to be losing blood - slowly bleeding out. Honestly, I was still under the influence of the 24 hour spinal morphine. Okay, so the nurses were fussing around me. I noticed they seemed to be taking my blood pressure a bit seriously and enough with the blood tests… how many were they going to take??! My dad looked very serious. Now that I think about it, my DH and brother, Matt, looked a tad pale. I was definitely aware that everyone seemed tense and fussy but I wasn't worried. I didn't really get it. A team of doctors came into my room with a portable ultrasound and they examined my belly. There was something going on. They were talking about performing another surgery… I remember asking if I was going to have another operation and they kind of realized that I was really conscious and aware of what was going on - sort of. They decided that I was losing blood too fast and ordered a blood transfusion. Two bags of O+ blood.

I never thought I would need a blood transfusion. How strange to see a big bag of dark crimson blood. It arrived with a nurse who placed it beneath my blanket, between my arm and my body and told me the blood needs to be warmed up to my body temperature. She left the bag of blood with me for a while. Later the nurse returned and hung the bag of blood on the pole beside my bed and then hooked me up. I watched as the blood dripped slowly down and into my vein. How very very strange to be receiving a stranger's blood! I never dreamt that I would be me on the other side of the blood donation. I still don't think I'll ever be brave enough to go scuba diving. The mere thought of it makes my heart quicken… but you never know. Never say never.

Give Me the Gold!

From the minute my family, friends and neighbors received news that I was in the hospital, diagnosed with cancer, and undergoing a complicated surgery, the equivalent of an all-stars sport team of kindness came together and steadily pounded pavement to assist my family in any way that they could offer. My mother moved into my house, my SIL (sister in law), B. came daily to organize and play with my kids, my husband, father and brothers kept a steady vigil at my bedside. Closest friends came to the hospital, bringing treats and food. One friend's daughter brought my DH (dear husband) a blanket and a pillow. Family and friends from Israel and around the world began to pray for me. Hundreds of people are pleading with G-d on my behalf right now. Mind boggling. Since arriving home from my stay at Shaare Zedek hospital, there has been a daily parade of healthy, fresh, delicious home made meals delivered to our door. Every. Single. Day. When you're reeling from the blow of a huge diagnosis that literally flew in from left field, the automatic response could be anger, sadness, fear. All very normal.  Being held up and embraced by such a fierce outpouring of love and encouragement has brought out a soul altering reaction in me. I feel euphoric and high on energy…. and no, I haven't received any medical marijuana (yet). Maybe this experience is a turning point. Cancer is a hurdle, a test, that's going to push me to my limit and I'm going to train for it and then smash it like a gold medalist at the Olympics. I'll set my goals as high as they go and break every record….

My, life is good! It's a Beautiful Day! Cue music a-la U2,

"You love this town
Even if that doesn't ring true
You've been all over
And it's been all over you

It's a beautiful day
Don't let it get away
It's a beautiful day"

… cue record scratch! SCREECH!

Bang! Bang, bang on the door. It's 8:30 am. Shabbat (Saturday) morning. BANG! BANG! BANG! I'm upstairs in bed finally asleep after tossing and turning all night. B A N G! Someone opens the door and I hear the loud raspy voice of my next door neighbor. She's speaking in broken, heavily accented English. Raised agitated voice. I drag myself out of bed and get dressed but by the time I get downstairs, she's gone. I don't have such great history with A., the neighbor. She's a disheveled, bitter, divorced mother of three young adults living under her roof,who still shares ownership of her house with the ex husband who cheated on her and married his sweetheart. When I came home from the hospital, she sat in my living room for 2 hours telling me why certain personality types get cancer and how modern medical screening tests are a waste of time, and how half of her family died or is dying from cancer…. and I obviously need a lesson in how to politely screen my visitors but that's another story. Our history is current and it's loud and bothersome. Her eldest child, a 23 year old young man, keeps late disruptive hours in the form of loud, sometimes drunken, people filled parties and BBQ's until 2 or 3  in the morning out the front of their property - directly to the right of my bedroom window. Over the past 6 years living here, we've had our complaints. In turn, A., the neighbor takes opportunity to have her complaints too. Such was the case this lovely Shabbat morning with the bang bang bang on the door. Apparently, our white cat, Sarafina, likes to sunbathe on the neighbors balcony. According to her, our cat (who we've had for over 6 years and never had a problem with) pulled her favorite shirt off of the clothesline, sat on it and covered it in cat hairs, and then proceeded to scratch or bite the shirt to shreds. Very curious and unusual behavior for a cat. My persistent neighbor waited until 9:30 pm after Shabbat to call me on my cellphone and yell at me about this and demand my immediate action. I explained that cats are very difficult to prevent from climbing and going where they please but I will do my best to keep our cat off of their property. She yelled at me. I continued with, I'm recovering from major surgery right now and this conversation is upsetting me and I don't want to continue. She said, "Now that you have Cancer, you're going to use it every time you need to deal with something?! Don't play the cancer card with me! You have a healthy husband who can take care of that cat! Get rid of it!" My mouth went dry. My heart flipped. My adrenaline cranked me into fight or flight. I cleared my throat and said, "A., I will take care of the issue. I will hire someone to build a fence between our properties that no animal can scale." She didn't like that idea. "A., you are really upsetting and hurting me. I need to get off the phone now." I finally managed to end the conversation and as you can tell, I'm wasting a lot of positive energy rehashing and worrying about the petty next door neighbor. That's not good. Not good at all.

After hanging up the phone, my mouth completely dry, heart still hammering, I realized that I acted like a fool. Why did I let the disgruntled neighbor into my protective shield of love and joy?! I let my guard down and that is not going to fly! So. From this moment forward, I'm going to have to come up with a strategy. I'll need a plan, not just for silly neighbors, but any negative or harmful situation that can G-d forbid move me off my path of love, support, and determination to get that Gold Medal at the end of this Olympic sized event in my life. I want the cure! I don't want Silver or Bronze… give me the Gold!

Cancer Makes the Heart Grow Fonder

Here I am , back on Mama Bla Blah after months of silence. The past 2 weeks, I feel like I've been living in an out-of-body experience. How did I get here? How does a 36 year young mother of 5 end up with stage 3 ovarian cancer??? I can tell you, it's the last thing I thought I'd be dealing with after the whole saga with the parotid tumor back in 2011. After having such a rare tumor, who would imagine that I'd sneak into another rare statistical category?!

Several months ago, I posted here about having blood work done and discovering anemia and drastic vitamin deficiencies. Shortly after, I began to suffer from vague symptoms such as severe fatigue, morning sickness, and extreme nausea. My thyroid led us on a wild goose chase for a while due to a growth (benign) which concerned my doctors for a few months. Thank G-d, my thyroid is ticking away nicely… so why am I feeling so down? Over the next few months, I returned several times to my family doctor complaining of tiredness and nausea. I felt like I was barely coping with my daily activities and life's pressures. My doctor sent me for all the routine blood tests which were all normal. You can have perfectly healthy blood even with cancer. Good to know. Even though I was eating less, exercising, and limiting my calories, I felt like I was gaining weight! That alone was depressing and made me doubt my other symptoms - was I  becoming overwhelmed with my motherly duties? Was I lazy? Depressed?

I'll share a secret. My DH and I were hoping to conceive and each month my baby hopes were inspired and encouraged by terrible nausea, morning sickness, and fatigue, and missed periods. I will also confide that I spent a fortune on home pregnancy tests and and all but one were negative. To make a long story short, our baby hopes - ( the sacrificed baby?) - may have saved my life! Over a period of 3-4 months, peaking in June, my symptoms worsened. My tummy became uncomfortable, bloated, and round. Three weeks ago, I panicked and called the women's clinic and took the next available appointment with a gynecologist on the following Sunday morning. On Sunday, July 22nd, I had an ultrasound and what he saw there was enough for the ob/gyn to send me directly to the emergency room. At the hospital, I was seen by an expert ultrasound doctor and referred to CT. The CT confirmed disaster. Masses on both ovaries, larger than grapefruits (why are tumors always compared to fruit???) that had spread throughout my abdomen and possibly into my liver! I was hospitalized overnight.

Before being released from the hospital the next morning, I was seen by a surgeon and a doctor who told me my only option was to have exploratory surgery to see up close what the full situation was. They booked me in for surgery in two weeks time - August 8th. In the meantime, my dad did the research. He consulted with the top surgeons and physicians in oncology and found Professor Uziel Beller, a world renowned gynecology and oncology surgeon at Shaare Zedek hospital in Israel's capital, Jerusalem. The next day, my DH and I ran to Professor Beller and pleaded that he take my case. He was on his way to surgery and said, "I'm terribly sorry that you'll have to wait 2 hours while I'm in surgery but if you're willing to wait, I'll give you my full attention then…" What a relief! He went over my medical papers and arranged an operating room in two days time!!! He agreed to operate on his day off! We hired him privately. I went home for one night and came back the next night for pre-op.

On Thursday morning, July 26th, Professor Uzi Beller and his team removed all of the tumors. At first, Professor Beller wasn't able to confirm anything about the "mass" in the back of my liver. He said that he felt it and it felt soft but without seeing it, he couldn't confirm. When he came out of surgery, my family received the glum news. My poor DH and father! About 20 minutes later, the professor was able to confirm that the 3 liver findings are all hemangiomas - benign clusters of blood vessels. Praise G-d!

So there you have it. I had cancer. I'm 36. I was the poster girl for good health… and yet I, Erika, mother of 5 young children, am going to experience 6 months of chemotherapy and all the trimmings. I've joined a new club that NO ONE wants to be a member of - the Cancer Club, and I have to say… right now, I'm at the absolute highest peak of love and enthusiasm for life! I am overjoyed to be here. I'm scared and worried about the future and yet, I have never felt more loved, embraced, and optimistic! I'm more in love with my DH than ever before. I feel more love and joy for my family and friends… and I have discovered that cancer makes the heart grow fonder.