September 2, 2013 § 19 Comments
Opening wide, I thought I saw a pearly white sliver, though not necessarily where you would expect to see a tooth emerge. My mouth was sore, but I knew I wasn’t teething. On the other hand, after years of mainlining toxins and exposure to high dose radiation, it could be a mutant tooth.
Conveniently, I had an appointment with my dentist for a routine cleaning. I mentioned the soreness, which she chalked up to a slew of possible causes – no mention of fangs. Since we couldn’t locate the emerging dentin I swore I had seen earlier, she sent me away and requested I return in two weeks. I did, and this time the white pearl loomed large.
“Osteonecrosis” she said blandly, “you need to call your Oncologist.”
My mouth open, my body in dentist chair recline. I thought my smile was my biggest concern, instead I am re-directed to my Oncologist.
Osteonecrosis of the jaw is an uncommon, but severe, adverse event associated with oral and intravenous bisphosphonate therapy
Yes, I have been receiving intravenous bisphosphonate therapy (aka bone strengthener) but I never imagined it would be a troublemaker when there were so many other therapies that seemed far more suspect.
I have long been aware of the possible adverse effects associated with my treatments. I figured the radiation to my chest, my head and my brain would get me first. Or, maybe the hundred plus chemotherapy treatments would push me over the edge? And all those essential bone scans, MRI’s and CT’s with their associated warnings.
I have had dozens if not hundreds of tests that exposed me to, or injected me with one toxin or another. Doing the only sensible thing possible, I make note of the warnings, and ignore them.
Seven years of debilitating treatments, anxious scan results, and the occasional self-diagnosis. It’s a lot to go through to drop a few pounds.
Seven very precious years spent with my magnificent husband, my daughter and stellar friends. Seven years going on eight years with nine years in reach and ten years hardly a stretch.
Knowing all that and still, I live like there is no tomorrow.
As for the Osteonecrosis I’m rinsing my mouth twice a day with an oral concoction that’s probably toxic. No sign of fangs, yet, will keep you posted.
February 16, 2013 § 8 Comments
I wanted to inform you of recent developments at home that have the potential to impact Frannie at school. Though solid, centered and never more enthusiastic about learning, challenging health issues at home may impact Frannie in school and elsewhere . The breast cancer that progressed to my bones a few years ago has metastasized to my brain. Believe it or not, I am optimistic, even good humored. However, the world, and school is filled with misinformation, touchy subjects and a couple of jerks.
A class about mitosis dove deep into the obstacles associated with curing cancer, vs dying of cancer, vs battling a variety of treatments; from chemotherapy to radiation. Frannie came home with a slew of great questions, and while some kids hear “cancer” and think pink ribbon covered bicycle races, or imminent death, Frannie knows that cancer is what we live with.
Going forward, I ask that you be aware of the complex world she navigates. She is interested, inquisitive and the best thing you can do for her now is to engage her, listen to her and keep filling her brain with the learning she loves. Thanks to her I know about tectonic plates, ancient poems, nutrition and the power of point of view and that’s just from this week.
You probably detected that Frannie is a very private person, so while she knows I am sharing this information about our family with each of you, she would not be comfortable with your sharing it with the entire class. Unless, you specifically discussed it with her in advance and agreed on the terms and details.
You can always call me to discuss any questions or concerns you may have. No surprise, there is no one, and nothing I am more interested in discussing than my daughter and her well being.
With gratitude and respect,
February 9, 2013 § 15 Comments
Happy 13th birthday! Sushi, movies, presents and cake as promised. Yes, we can go to the bookstore.
Exciting weekend with a blizzard dumping over 2 feet of snow. If you’re not going to help shovel, you have to walk Zeke and don’t forget your d’var and violin and any homework for Monday. Get that done and we can watch food competitions, contemplate our next meal and catch the new episode of Downtown Abbey on Sunday night.
BTW, you know I had a bunch of scans this week and your dad and I met with the doctors to discuss the results. This cancer stuff sucks and they found a couple of spots in my brain. They call them abnormalities as if we didn’t know my brain was abnormal. It explains the numbness in right hand. I start full brain radiation next week. Nothing to worry about, it’ll make me tired and bald but you’re use to that. Yes, I promise I will be ok.
Remember the TED talk we watched the other day about the woman who had the brain hemorrhage. If I start talking like a dog you gotta let me know.
I’m sorry. We thought of not telling you yet, but I want to be 100% open and honest about this stuff so you know you can always trust me with the truth. I know two women who’ve been through it and they’re ok. I’m not worried, I’ll be ok. We’ll all be ok. I love you too, so much.
We’ll get through this, we always do.
I love you.
April 16, 2012 § 18 Comments
Patient names have been changed.
It takes me a moment to place her. You know how it is when you see a face you recognize, but you’re not sure from where. Then it hits me: Joanne, from my Monday group. I’ve not seen Joanne outside of Hester’s office, or without that green plaid scarf turned round like a turban on her head. Today she sports a cap, a fitted cap. The plaid scarf dangles out of her purse, a thin book on top. I try to make out the title, but between the text size and the distance, it’s too difficult to read, and like everything else that is too difficult to deal with, I move on.
Joanne hasn’t noticed me yet, so I use the brief reprise from social obligation to indulge in the colors and textures she has adorned herself in today, starting with the soft blue cap on her head. Fuzzy fibers halo the crown – mohair or angora? Fibers that, anywhere else, would smell fresh like baby powder. But nothing smells fresh here, Shapiro 9 Oncology Waiting Area # 1. The deep breaths we take for stethoscopes and exams fill our lungs with a mixture of rubbing alcohol and anxiety. Smells of life are elsewhere, on another floor, another building, another story all together.
Shapiro 9 has two large waiting areas and two large treatment areas, a warren of offices, exam rooms, rooms with “caution” signs on the doors or “authorized personnel only,” and a modest gift shop near the bank of elevators that sells wigs and hats and jewelry just in case your chemotherapy requires a booster of retail therapy.
Tucked in a far corner of the sprawling Oncology Hematology floor is Hester’s office. The plaques on Hester’s wall are testament to her accomplishments, the books she’s authored scattered on side tables. But nothing inside or outside her office signals the depths of Hester’s gifts as a healer. She isn’t a doctor, though she’s married to one. She can’t cure cancer, nor does she know what might. But, she does make it easier to deal with, and that is very important to me and to all the other women she counsels.
On Tuesdays Hester holds court for “women newly diagnosed.” I spent many Tuesdays in her office with similarly afflicted woman until a couple of years ago when I graduated to Monday’s group.
Monday’s group is reserved for the pale castaways, “women living with advanced disease.” Hester is a master of compassion and, in her Dojo, we can prepare ourselves for battle: the scans, the next treatment, the loss of desire, the loss of hair, the loss of other members of the group.
Loss has been a common theme except where my weight is concerned. I might be able to forget I have cancer, but not the ten pounds I gained in treatment. I despise scales, especially hospital scales. I walk past them as quickly as possible on my way to the Monday group.
If you can answer “yes” to living with advanced disease, or metastatic disease, or stage IV cancer you are welcome to join. No need to knock, no initiation fee, just drop by between 11:30 and 1p. The size of our group varies, attendance is never taken, and no one is tardy. We arrive in dribs and drabs for a round robin of sharing, each of us taking a turn discussing the highs and lows of life on loan. We let rip whatever comes to mind; mundane or morose, everything is fair game. We are a secret society of seriously ill sisters.
Paula’s hair is tousled just enough to look real. And, after a decade on Taxol, her smile has not diminished and her skin still signals rigorous exercise. These are my beacons of hope, the women living for decades. Statistics are irrelevant, we’ve already beaten the odds. But the abyss is close by: Laura stopped being coherent shortly after brain metastases captured what was left of her grey matter. The following week she was in hospice, a week later she passed.
There is no group today. I am on the 9th floor waiting for my blood tests and weekly chemo infusion. Joanne must be doing the same. I speak up; tell her that I like her fuzzy cap. We chat and smile like two people anywhere. She complains that she is cold and pulls the plaid scarf from her purse. Her paperback falls to the floor. I pick it up, see the title now, and say nothing, handing the book back to her. “Becoming Friends with Death.” Maybe she’ll want to discuss it at next Monday’s group. I don’t want to touch the book, or the topic. Someone calls my name. “Marilyn Kass” I cringe, it’s time for vital signs. Have I told you how much I hate getting weighed?
This piece was written for inclusion in the COL Book of Writing.
September 20, 2011 § 13 Comments
Life as a newlywed this past year has been grand, from the honeymoon in Italy to our family trip to China. Closer to home, it was a summer by the sea with friends, and our new puppy, Zeke.
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.
March 23, 2011 § 4 Comments
Dear Ms. Kass,
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.
October 16, 2010 § 21 Comments
Predictable was out, and gratitude was in at our mid-life not first marriage for either of us wedding. I’m an artist, writer and advertising executive. Marty, a world-class brain researcher and expert on ADHD.
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 5th 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 48th 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.
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.
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.