If you didn’t know better you might have envied all the international travel and naps near the shore. But routine chemotherapy meant that the only one who wanted to get into my shoes was my 11 year old daughter – and she was after the heels. Everything looks so great on her lanky limbs and elongated torso. I should keep the yoga pants and give her the rest.

Life with cancer isn’t all bad. I rather enjoy the impending sense of doom the diagnosis brings. Like our new dog Zeke who barks at trashcans and stuffed animals, the call to live boldly summons my inner bark.

Ruff, I’ll do whatever I want.

Yip yip, you can’t catch me.

Yip, I eat shit and I’m cute.

Woof, the world is my playground.

Grrr, leave me alone, I’m taking a nap on the chaise.

My initial diagnosis came with a flurry of attention. A few years later, support loomed large when I was diagnosed with a recurrence and the onset of advanced disease. But, it’s impossible to maintain vigilance over so many months, let alone years. What was once life altering just became life itself.

The infusions are routine. The doctor and nurses are my new old friends. We share milestones and more mundane details between vital signs and the search for a vein.

Everyday ordinary, ruff ruff rough.

On behalf of the Brookline Commission for Women, I am pleased to inform you that Zoe Moran wrote an insightful essay about you which was selected as the 2nd place winner among the 6th grade essays written for the “Woman Who Inspires Me” essay contest. The essays written by students touched us, inspired us, and made us proud of Brookline Schools and its students.

“A Woman Who Inspires Me”

by Zoe Moran

Lots of women all over the world are talented, confident and strong, but not all of them persevere when they come to an obstacle in the middle of their life.  My best friend’s mom, Marilyn, is different.  She persevered when she faced two challenges in her life, breast cancer and a brain tumor.  While facing these two challenges and persevering through them, she became an inspiration to me.  In 2006, Marilyn was diagnosed with breast cancer.  Some people might have lost hope when they got cancer, but Marilyn didn’t.  Instead of losing hope, she gained it because she knew that she had many family and friends supporting her.  She also gained strength and confidence.  A couple of years later, in 2009, when she was done recovering from the breast cancer, she got a brain tumor near the back of her neck. Also, during her painful recovery from her cancer, Marilyn didn’t lose hope; instead she persevered and continued living her life the way it was before she had cancer.

Marilyn is a talented woman.  She is a really good chef and cooks super yummy meals.  When you walk into her house, there’s always a big aroma of delicious smelling food in the air.  She also knows how to balance out work-time with fun-time, always leaving time to cook even when she has to work.  Marilyn’s talent to balance things out inspires me when I have to balance out homework with gymnastics practice.

When she experienced both breast cancer and a brain tumor, Marilyn remained confident, although dealing with cancer is very painful.  She planned exciting trips and events so she had things to look forward to while she was having treatment instead of complaining that she didn’t feel good.

It was important for Marilyn to continue to be strong.  Even though she had surgery twice and had to take a lot of medicine, she persevered and stayed positive and strong.  Even if there were times she didn’t feel good, no one really knew because she was optimistic.  She wanted her daughter to feel good so she wouldn’t be worried.

Although Marilyn had both breast cancer and a brain tumor, she didn’t lose hope and persevered during her recoveries.  Also after she recovered, she stayed strong, confident and talented.  When she was recovering, she persevered and didn’t lose hope, where some people might have lost hope.  Marilyn’s strength, confidence and perseverance inspires me when I get hurt or injured.  I think of what she has been through and know that being strong and confident can help you get through anything and achieve your goals.  Marilyn is definitely one woman who inspires me.

A couple of the details are off, but Zoe got the message. Thanks Zoe, I’m honored.

And thanks to author, blogger and writer Tami Boehmer who featured excerpts from my blog post “love shrinks tumor” on her site www.miraclesurvivors.com.

First and foremost, we wanted a celebration of love and of life, something that would allow us to express our deep appreciation for our friends and for our families.

Contrast is powerful and our wedding and relationship was full of it. When I first met Marty, thanks to the internet, all I saw were our differences. I was an ad chick and hanging with the creative crowd.

Marty on the other hand, was 100% Ivy League and the quintessential Harvard Professor, from his barbershop hair cut to his sensible shoes. Thank goodness he was a Mac or we might not have continued to email.

While Marty missed subtleties in shades of green, he knew enough to notice my daughter Frannie. She celebrated her 5^th birthday after we met and on date number two, he arrived with a birthday present perfect for the then Princess wanna be.

This researcher did his homework; the way to a mother’s heart, was through her daughter. Eventually I figured out what Marty knew all along, our differences made for a sweet balance. I took yoga but Marty understood the principals of Zen.

We had the personal contrast thing down, but it didn’t end there. I ate my healthy mostly vegetarian diet and exercised regularly. Things processed or packaged were verboten in my home and in my body.

Marty on the other hand, skipped breakfast and opted for a full liter bottle of Coke Zero which he’d replenish through out the day. Ten hours of Aspertame were washed down with rich cheese and bowls of vanilla ice cream.  Carrying a change of clothes between houses seemed to be his main form of exercise.

So, it was quite a shock when the day before my 48^th birthday, I was the one diagnosed with cancer. I was fit and healthy or so it seemed until we found the tumor the size of a golf ball in my left breast. That was November of 2006, I had known Marty for less than 2 years.

Our next year together I was in treatment. The year after that, I tried to recover from the debilitating therapies. Contrary to popular belief, the challenges associated with cancer treatment begin when the chemotherapy and radiation end.

Your wonderful support team assumes everything is “back to normal”, and that you’ll pick-up just where you left off. In my opinion, that only works if you left off in bed and under the covers. I was exhausted, chilled and soaked in sweat thanks to a chemically induced menopause.

Post mastectomy it was a relief to learn that Marty was more an ass man than a boob guy. I was also grateful he was a doctor and someone who could accompany me to medical appointments, look out for my best interests and talk scientific blah blah if he thought it might bring us closer to an expert.

We had spent four years together, with the first two, my being suspect of Marty’s sincerity. Once cancer entered the picture, his sincerity was self-evident. My mom would have called him “a real mensch”.

Both Frannie and I welcomed his quiet calm and deft skill as a human alarm clock. Were it not for his shakes, pokes and morning announcements, we’d be sleeping through lunch and maybe through the second grade.

It didn’t happen quickly, but eventually I gained traction and cancer moved into my rear view mirror. I was slower than my previous 100mph self, making progress and moving into the fast lane. We vacationed with friends, I travelled for work, and a speaking engagement in Johannesburg South Africa presented itself as the perfect opportunity for a family safari. I was all about embracing life and living to the max. I had no idea what was waiting for me next.

Shortly after our safari, I had the most unusual pain in my head, not a headache but a pain inside my head. A couple of MRI’s later and we learned I had another tumor, this one in the base of my skull. Like a flat tire at high speed it was the very last thing we expected. A bone met the size of an egg, was pushing against my cerebellum.  I crashed.  Paralyzed by pain and occasionally incoherent, it was three years since my initial cancer diagnosis and now I had metastatic disease, stage IV breast cancer.

They pinned my head to a table, and in true video game style aimed mega doses of radiation to the tumor from every axis, vector and galaxy possible. With the help of pain patches, and first class survivor genes (both my parents went through the worst of the Holocaust), I was rallying to deal with this cancer. The way I looked at it, it was like having an extra 10 or 15 pounds. I absolutely hated it, I couldn’t do a damn thing about it, so I’d stay medicated and try to ignore it.

This past January, my head sore from surgery, my neck immobile and my speech slurred from a combination of meds and exhaustion Marty turned to me and said “Let’s have a party.”

I had no idea what he was talking about.

“Let’s have a huge celebration” he said “let’s get married”

We had known each other for five years and over the course of those 60 months, had discussed marriage, but I was always dismissive. We had both been married before and the current situation seemed far from festive.

With my head healing and body scarred, I gave it more thought. Marty was always there for us. What else did I need? My other concerns evaporated.

I said “yes” to the celebration and instantly I had something wonderful to plan and to focus on. I wasn’t Marilyn with metastatic disease, I was Marilyn, newly engaged and planning a wedding.

For a full six months the MRI’s, Pet scans and blood tests were all routine until they weren’t. Two months before our wedding, the unsettling pain in my head resurfaced. The pain and a questionable test result, led my doctors to conclude the possibility of advancing disease. From the films, it appeared as if the tumor was threatening to impinge on my brain stem. It’s position between my cerebellum and jugular vein was textbook rare and extreme.

There were experts who pushed for surgery, while others warned that surgical intervention would likely do more harm than good.

I began a course of oral chemotherapy, five pills a day. My hair would remain in tact, but my hands and feet would crack and burn. I read the small print, everything would be fine as long as I avoided use of my hands and feet. Sure thing. When walking across a room becomes a challenge  I was told dosages could be re-evaluated. I’d be on this drug, as long as I could stand, literally.

I asked my attorney to finalize my will, Marty spearheaded the effort on second opinions and our DJ asked for our playlist and song choice for the first dance.

Blunt and bizarre, it could have passed as soap opera or satire. Instead it read like Shakespeare, tragic and hard to believe.

I started to imagine my wedding day as a great goodbye and combed through my list of friends insuring all were invited. Marty did the same. A treasured necklace from my mom was transformed into so many pairs of earrings and necklaces for my sisters, and nieces. I just wanted to give. Give away anything precious and share what I had while I could.

I tried to convince myself that Frannie, now ten years old, would be OK, even as I used every muscle to avoid thinking about it. Frannie, on the other hand, never missed a beat. She’d share her fear of losing me and I’d fight back the tears.  “I am always in your heart” I’d say trying to remember the ‘right’ response. I’d add the more practical points about our “plan” with mentions of all the family and friends who would step in and of course, Marty would be her dad soon enough.

What I never mentioned was that at 51, I still ached for my mom. She passed away a dozen years ago, and while the sting had softened the loss had not. I hated to imagine such pain for Frannie.

There was a great deal of crying that month and I saw myself walking down the aisle on my wedding day trying to hold back the tears with one hundred emotional guests, their eyes welling up as they flanked either side of me. I’d hand Frannie off to Marty and our marriage would last a minute, no more.

It seemed as though the wedding would be my signature farewell.  That said, I had to own it in everyway possible, put my mark on every detail. I called on my past theatrical experience and channeled my inner Art Director. I worked my ass of enjoying the decision-making moments, happy to wrap my arms around something I could actually control.

If a hint of the routine crept in I searched for an alternative. The thought of the first dance flummoxed me. A full year of private Salsa lessons and Marty and I still couldn’t master a move. So, we made the first dance a Contra Dance and would just call everyone to join us on the dance floor.

I continued to throw out the standard wedding conventions, opting instead for things we just loved. Marty and Frannie were partial to vanilla ice cream and hot fudge, so we passed on the iconic wedding cake and ask our friend Steve to make his amazing fudge sauce.

I visualized our guests; family, friends and colleagues. I thought about prayer, and chants and the power of a large group in perfect sync. I dreamed of harmonic healing energies. I believed in miracles and medicine and anything that offered hope.

I had no idea what a Healing Drum Circle was, but I knew our wedding needed one. I found Julie Corey who ran them all the time for survivor groups as well as anyone else seeking healing, wholeness or a good time jamming. My nephew Jonas newly christened, as a Shaman would be on hand to keep the fire and call the directions.

I would make my good-bye beautiful, a feast on every level. I pictured something spiritual, but also delightful like autumn leaves, brighter than you expect. Mostly I wanted this event to be a gift to everyone. A giant thank you, a huge embrace and a lasting memory of me.

We had been transforming Marty’s land in Rye, NH and it was ready for prime time with stunning stonewalls and picture perfect fences. Things we planted early in the season had taken hold in fertile ground and continued to bloom well into the fall. The rose bushes never let us down.

Four weeks to our wedding day and I moved slowly, like life in molasses. My inbox pinged with the last of the medical opinions. We had been waiting for this final, the most important one as it reflected an exhaustive examination of current and previous scans by choice specialists. I wondered where they would net out, on the side of surgical intervention, or in the leaving it alone camp and just increase the chemo or go for more of the targeted radiation. I read the email.

“Reviewed all your films, treatment records etc. Bottom line there is no evidence of tumor progression.”

The tumor was not growing, I wasn’t going to die.  Everything changed, again.

I called Marty over and had him read the email. We laughed and looked stunned and sat motionless for a moment. Then I forwarded the email to everyone we knew and picked up the phone because sharing good news was a gift in itself.

While I planned for a wedding that would unfold in vignettes, I could never have planned for the incredible celebration, the joy, the gratitude and the love. Contrast is a powerful thing and our lives were full of it. The day was a triumph, not the solemn tribute I feared.

We signed our Ketubah while a circle of our closet friends and family sang and hummed and filled the room with harmonies.  We moved outside to the traditional Chuppah where guests had gathered around bountiful bars with a roaring fire in the fire pit softening the chill of a brisk autumn day. The reception under the tent was exhuberant. From Contra Dance to Hora our friends raised us up high on wobbly chairs and played out a scene from previous generations of Jewish weddings.

From the first dance to the last, the floor was packed, plates were full of spectacular foods and glasses emptied and refilled multiple times.

People commented on my glow more than my gown. I teased them,

“Radiation made me radiant”.

I know it’s cliché, but it was one of the happiest days of my life. I was so happy to be alive, happy to be marrying Marty, happy to be making our family official and happy to have our dearest friends and family within reach of a hug. Together we celebrated life and love.

Last week I went to see my Oncologist, Dr Nadine Tung. She said the tumor in the back of my skull was actually shrinking, the questionable spots on my spine were no longer there and with the exception of an area on my pelvis, the cancer for the moment seemed to be quiet.

Dr Tung attributed it to the oral chemotherapy I was taking and the CyberKnife radiation treatments from earlier in the year.

I attributed it to all the love, and to the prayers, and to the drumming, and dancing, and my friends, and my family, and to hope and to happiness. I suppose my doctors deserve a drop of credit as well.

We’ll never know why I developed breast cancer, nor will we ever know for sure what’s suppressing it at the moment. I guess I’ll just continue doing what I’ve been doing all along and that’s everything under the sun.

xoxomomo

One dear pal made a magic quilt. Low and behold, it multi tasked as a magic carpet and arrived just in time as I was in serious need of  instant transport out. The narcotics had impaired my driving, and just about everything else.

I have been poked and prodded on a regular basis since my initial breast cancer diagnosis over three years ago and at no point along the way did anyone pick up on the spreading disease. Damn straight I needed a magic quilt, a magic carpet and any other magic out there.

That big honkin’ tumor pushing up against my spinal chord and cerebellum was the giant buzz kill, party crasher, metastatic breast cancer. The cause of some major big headaches. Alpha to migraines and equivalent to finger in car door 24/7.  I needed super magic, uber magic, medical magic – if there is such a thing.

My Dr’s concluded I needed the Cyberknife. Sounded aggressive They assured me it was painless. Good patient that I was, I believed them. No time to waste, must shrink the tumor. I put on my fluffiest hat and jumped on my magic carpet. Whoosh.

Here’s what I knew about the Cyberknife. Nothing. With the exception that some agency had certainly been hired to come up with the name.

“Cyber” a common prefix, suggesting video games and battles, rarely used in the lexicon of the healing arts. I can only assume they called in the 14 year old boys for this one.

“Cyberknife” could have easily been a super hero, but WTF, someone slapped the moniker on the tumor seeking robotic arm that delivers high dose radiation and now we have a treatment that is branded. Ad chic that I am, I approve, but might have opted for something more blatantly descriptive like “Tumor Buster” or “Top Dog Rdx”.  No matter, no one was paying me for this naming gig.

Cyberknife treatment required the making of a custom mask and  as I mentioned before – I love masks. Turns out that the custom mesh mask that was made for my therapy was utilized not for performance purposes, but for pinning me down during the treatments.

The robotic arm aims lethal (to my tumor) doses of radiation. It is mission critical that the rdx rays hit the intended target.  Please zap tumor only. The mask, secured to the table is so tight across my face it leaves an imprint of reptilian marks across my face.  I had more fun with masks when I was in College and of all the times I have been pinned to a table this was for sure the least pleasurable.

An appointment with my Oncologist waits until completion of the five day Cyberknife plan. Five days, an hour a day, head to head with the robotic arm.  The tumor shrinks, the pain decreases. In a few weeks when the dust settles and the tumor cells scram, we will take more pictures to see what is left. I will pray the xrays have scrambled the egg.  More magic.

Looking ahead, every few months we will be journeying inwards via screens, scan and MRI’s in search of demon cells.  Join me on this adventure of a lifetime or should I say this adventure to save my life. Either way, I love your company and am so glad I am not doing this alone.

xoxomomo

We’ve eyed the alien Capt’n.

She’s hanging’ off the back of the skull and won’t shake lose. How in Jupiter did she get back in here? I was sure we obliterated her pink clan last time. I hate when they try to make a come back.

We’re cool Legs. Our alien here only knows how to replicate when undetected. Now that she’s in eye shot, it is time to say Sayonara skull loving sister.

Momo-mobilize every member of the fleet, we need a major presence.

When I give the cue, every true alliance, past pal, current companion, new contact, and Chez Momo Hip Ship family member should take their high intensity rays of hope and  pure beams of light and love and offer it up to the universe. Ask that it strengthen Momo and I promise our noxious alien will buckle in a garden of goodness.

They don’t stand  a chance.

Lesion  - sounded bad but more than bad, it sounded vague. Would Bacitracin help, possibly a kiss or a giant bandaid?

Appointments, events and practical details wandered off like fireflies. Tuesday I was out of town on business, Wednesday I was at a  pre-op meeting with a Neurosurgeon, Dr Ekkehard Kasper.

Over priced and over crowded, New Years Eve had never been my thing. With my biopsy scheduled for New Years Eve Day tradition continued and I would be staying in on New Years Eve. Staying in a hospital recovering from a Biopsy so delicate it required a neurosurgeons finesse to access a slice of the demon.

With his hand close to my right ear, Kasper explained  “You have a tumor the size of a small egg growing in here”. Glass flowers everywhere were jealous that his tender tips were all mine that moment.

I must have looked too calm, or too confused.

With a glint of boyish enthusiasm, he asked: “Has anyone shown you pictures of this yet?”

I had been scanned and imaged, measured and medicated but until that moment I had been without the benefit of visual aide. Kasper pulled a couple of the more compelling images from the MRI deck to pass around.

I think I heard Marty say “shit”.  I knew the Bacitracin would be useless.

The the area in question was circled. A near perfect oval, very much the small egg described.

The sutures were removed today and while the course black stitches reinforced my dramatic story, the real art was inside.

Muscles and nerves retracted to gain access to the tumor site were reassembled without event. While the breast cancer had spread, I had the uncanny feeling that it was my creativity that was out of control at this moment. That said, I put in my order for my own  set of MRI images.

xoxomomo

Thanks sweet Marty for helping me jump-start one of the better parts of my cancer nightmare, my blog.

It wasn’t that I lacked for ideas.  It wasn’t that I just couldn’t write.

I’ve been in the hospital for over a week chasing debilitating pain and it’s kissin’ cousin the painkiller. Add to that a few hundred  “NO SHIT!” moments and any real writer would have blogs, books, calendars and possibly a screenplay under contract.

Not me. A week of all this pain and attention and not a line of copy to show for it.

I’ll be up front, lack of content was not the biggest culprit here.

It’s been a hot house of fantastic material;  A great staff, endless and wonderful visits from friends and family and just enough boxes of kleenex to cover the “aha”, “oh no” and “oy vey” moments.

I met Republicans in the Emergency Room who were afraid of affordable healthcare.

Learned that the cyber knife fitting involved making a mask  and I use to love making masks!

When a chat with friends turned to stool softeners, a perfect pair of BIDMC socks showed up courtesy of Hospital CEO Paul Levy.

I knew my stories would have to flow, but when?

The real problem, was that when I went to type, nothing looked like English. Here’s an example of an email I sent to a friend:

A number of days ago Marty sent around the email you will see below. That said, there may be very little here that is actually newsworthy to any of you. Call it plagiarism, I prefer creative collaboration. Marty was Copy Writer. I was the Art Director.

There’s more coming. I promise, but first a note  of deep thanks and gratitude for those who have sent love and prayers and food and flowers and wishes and warmth. In this dreadful situation you have been a blessing to me and my family.

Dear Friends,

Marilyn had a very rough night, perhaps 2 2-hour bouts of sleep, and the rest of the time unremitting pain and the impossible task of finding any kind of comfortable position. I spent much of the night rubbing her back.

Dr. Kasper the neurosurgeon came by and removed the dressing to reveal a long row sutures, but it feels better having the dressing off, which was pulling.

Marilyn said to Dr. Kasper that in addition to it hurting where the incision was,  that it also hurt on the top and sides of her head.  He said something like, “of course, we had to put your head in a vice like clamp and screw your head to the operating table with three screws to make sure that it did not move at all during the procedure”.

(Art Directors note: An image previously selected for comic relief and dramatic impact was pulled from this post, as it accomplished neither. )

Marilyn’s been seen by at least 4 MDs this AM, who seem to be taking the pain issue seriously, and will be switching her to patient controlled administration and letting her take more morphine than what she has currently been receiving, which has been inadequate.  They will try to get on top of the pain in the next few hours. Frannie brought in a monkey to act as surrogate for her sick mom. Marilyn attached the patient controlled administration device to the monkey .  Until they find a long lasting med Marilyn can tolerate, Marilyn has her morphine Monkey.

Momo is very much herself as the surgical procedure has left her sense of humor intact.

Marilyn is up for adult visits (no kids except Frannie). Probably best to call first to confirm.  She isn’t looking her best, may hopefully be sleeping though she hasn’t been comfortable enough yet.

Happy New Years all.

Love, Marty

Sraight  from wikipedia,the  cerebellum receives input from a variety of sensory systems and other parts of the brain and spinal cord. It integrates all these inputs to fine-tune motor activity.^[1]

No surprise, I lose balance on occasion, and am challenged by otherwise simple functions, like typing.

Maybe this is all breast cancer connected, maybe not.  My biopsy is Thursday 12/31. I can expect  clean sheets, dinner in bed and with any luck my own morphine drip.

Call first, maybe you can visit. One rule, must bring gifts of food or flowers  for  the staff. After all who wants to  work New Years Eve.

xoxomomo

Prep for a PET scan, is strikimgly similar to the low carb, high fat South Beach diet.

In the case of a PET scan, you  replace 12 ounce cans of Coke Zero with  an 8 oz can of mint flavored canola oil infused with a nuclear tracer. For those of you concerned about the ill effects of artificial sweeteners, rest assured, more research dollars are spent on irradicating calories than cancer –  drink up.

My technician for the scan was the young and studly Andrew (or was it Aaron?) . We became fast friends. I offered my blood and in exchange, he promised to start his toxic elixor. But it was simply a tease; infusion interuptus. There were technical difficulties with the machine and technicians would need a couple of days to repair it.

I was ok with that. I had plans to go to DC for business the following day and any surprise, good or bad could wait.

I  was relieved, I was sedated, and I smiled for this picture below.

I returned a couple days later to the imaging clinic. Greeted tenderly by none other than Andrew (or Aoron). And, having made it through the better part of the week mostly coherent  and often charming I doubled my dose of valium and slept soundly in the sugar donut.

Reality is tough, but the unknown, a black hole of horror. That said, Marty and I wanted the diagnosis asap. We arriving uncharacteristically early we took advantage of some free parking. A little know trick I had gleaned from my daily rdx excursions.

It was delightful to be welcomed with enthusiastic hellos. The kind of hellos that suggest pleasant outcomes.

I brought chocolates just in case the ornery crew required some softening. But nothing sweeten the blow.

True, a single 2 inch tumor is far  better than the multiples we had feared. Unfortunately, this particular 2″ mass reared it’s ugly head inside of mine close to critical organs like  my spinal cord and brain.

Everyone was so busy with upcoming holiday schedules and the “real” emergencies at hand, that coordinating a biopsy was yet another hassle.  Yes, BA Cancer was the most likely candidtae, at the same time its presentations without mets and in my skull suggest good news would be in short supply. I have officially crossed the line to pessimist. Then again, I havbe been up since 4a, somewhat uncomfortable and burning multiple batches of cookies.

The relentless pressure on my head and neck is a constant reminder of  the alien within.

How do I feel? My head hurts, my humor is dark and  I thank god my friends and family have not yet bored of my stories, tsoris and tears.

The other evening I had a crying fest with my 9 year old. She shared that she was sad that I had cancer again, that she would miss my walking her to school daily and picking her up on a regular basis.  Guilty and pained I missed her already.

My compassionate  child did her best to comfort me. “It’s  not your fault you have cancer again mom, I love you.

Tell it to the gods, and to the wind and to the forces of nature over which there is not an once of control

xoxomomo