Room 535

 

Burnt Out

Although I abstained from pork for five years, I admit that I do love bacon, especially burned.  I recently had a colleague ask why I liked my bacon burned.

“To burn all of the gristle and fat off and give it crunch,” I replied. 

“They say that the charred part of the bacon can cause cancer,” he informed me.

“Well, I guess I’m ahead of that curve,” I responded.  “I’ve already had cancer.”

After all, almost everything I’ve ingested or come in contact may have carcinogen causing properties.  Inhaling New York City exhaust – check.  Cooking my food in a Teflon pan – check.  Drinking out of BPA plastic water bottles – check.  Eating fruit preserved in pesticides – check.    I try my best to educate myself of the effects of environmental and household toxins and rectify my actions.  But, what about all the products or environments that we do not know yet have cancer causing properties – cell phones, makeup or swimming in the community pool?  (The European Union has already banned various cosmetic for carcinogen causing properties.)

Or what about the levels of toxins available in each product and how we absorb it?  It’s clearly wrong to take a shower in DDT, but what about eating a few strawberries laced with tasteless and odorless pesticide?  It’s clearly wrong to drink out of BPA plastic water bottles, but what is the quality of the water contained within a BPA-free bottle? (Check out the documentaries Blue Gold and Tapped for the answer to that one.)  It’s clearly wrong for a bus’ exhaust to be coughed in your face, but what is the quality of the air that you breathe anywhere?

It’s easy to say that we should be more knowledgeable about the products that we use and eat and the environment that surrounds us.  The majority of the answers are only an internet click away.  Some days I can get lost in all of the PC do-gooding, but I remind myself, “Just do your best.”  I invest in domestic plants that improve the quality of air inside my apartment (rubber plants, certain ferns and ivy) and bring a BPA free bottle with a built-in filter most places I go.  I use natural mineral makeup, clean with essential oils and try to buy organic, although I struggle with that debate and the regulations in place.  And, today I brought my drink container (cleaned, of course) back to my favorite chain store for tea and they refilled it for free because they’ve never had anyone bring a cup back before!  I’ve always been a bit of an environmentalist, so it’s an added bonus that I am slowly purging my life of cancer causing products and environments.  After all, I can have my bacon and eat it too.

 

How the Little Limp Began . . .

 

Survivor’s Guilt

Five months have passed since my last post . . . and while there was plenty of inspiration around me, I had trouble finding the motivation to write.  The ideas kept coming, but the translation to this blog didn’t happen.  I became stuck . . . should every one of my posts end on a positive note?  Should I always triumph due to my survivorship? 

I wish to inspire and translate to all my fellow cancer survivors with victorious stories that continue in my everyday life . . . don’t let the disease get you down!  But what about the days that it does get you down?  The days when I don’t want to fill out yet another medical questionnaire . . . have you ever been hospitalized or had any surgeries?  The days when I get chastised by an observant citizen in a parking lot questioning the nature of my handicapped parking.  The days when a fill-in doctor questions the validity of a referral and orders unnecessary tests due to his inexperience with cancer survivors.  The days that I’m too tired to pick up my drop foot and carry the badge of survivor.  Or simply the days the others with cancer don’t survive.

When I was in high school, I was the youngest member of Partners-In-Healing, a cancer support group at our local hospital.  I was trained to offer an ear and my time to cancer patients.  One night, I entered the room of an elderly man with lung cancer.  He held out his hand to me and I grasped it in mine.  The tears rolled down his cheeks while he detailed to me that the doctors thought he didn’t have much time, but all he wanted to do was make it to his 75^th birthday in three weeks.  He told me that I reminded him of his granddaughter, although she didn’t come to visit him often.  I remained in the room for an hour – holding his hand and watching Jeopardy – but I don’t remember how I ended up leaving.  I sat in the waiting room hysterically crying . . . he didn’t deserve this disease – nobody does.  I don’t know what happened to that man because I never went back to look to see if his name was erased from the wipe board.  And, paralyzed by that experience, I never volunteered for Partners-In-Healing again.

For every time I rise, I remember the times I fell.  This is for those days . . .

 

A Very Merry Un-Birthday

* Posted on March 26, 2010 on Akoya Acupuncture’s original blog *

Oh what a wonderful birthday week!  Friends and family from all stages of my life came together to celebrate . . . good food and drink, great company and a viewing of Alice in Wonderland in 3D IMAX and Tim Burton’s wonderful exhibit at MOMA. 

But, although I was officially born on March 15, 1983, I was re-born on May 25, 1984  . . . the day I became cancer free . . . another day that was celebrated with family and friends.  So, in morbid Tim Burton spirit, I’m un-earthing a poem written from my teenage angst to celebrate my two birthdates.  As Lewis Carroll’s King of Hearts says, “Begin at the beginning and go on til you come to the end:  then stop.”

            I died seventeen years ago

                        in the arms of my mother

                        with tubes inserted in my limp body

           Toxins polluted my tissue and muscle

                        ate away my core

                        rotting from the inside out

            Marrow, lymph nodes and cells were raped

                        from my body

                        by the virus

            Cells burst with infection

                        swelling in my veins

                                    my lungs

                                                my mouth

                        seeping like sweat from every pore

                        suffocating me

                                    the old me

                                                the innocence of me

            I was born seventeen years ago

                        into my mother’s arms.

 

The Second Homecoming

* Published in Visible Ink: A One-On-One Writing Program fro MSKCC Patients *

When I moved to New York City in the summer of 2008, my mother claimed I was returning to my second home.  About an hour and a half from my childhood home on a bucolic Jersey farm, I resided in Memorial Sloan Kettering Cancer Center during the first two years of my life.  As a long term survivor of pediatric neuroblastoma, I would return to the bustling Big Apple for yearly checkups – wake up at the crack of dawn, squint my eyes in the Holland Tunnel, shuttle past the Tavern on the Green and arrive in parking garage – all behind the safety of the car window.

But now there was no tempered glass between me and the city.  I would step outside my apartment and be exposed to the cold wind, permanent scowls and constant bustle of cars and people.  My dog would bark at taxis and street sweepers and I would be kept awake at night by the sounds of sirens and drunken banter.  I would be packed like a sardine into the subway car and my bright white shirt would be dingy when I got home.  My favorite food was twice the price and I had to carry all of my groceries up two flights of stairs.  What the hell was I thinking?

New York City was supposed to be fun with lots of opportunities for a young single graduate student.  I wasn’t supposed to be waiting for the city to unhinge its jaw and swallow me whole.  Instead of going to art exhibits and museums, I was picking up the pieces of my apartment after it got robbed.  Instead of falling head over heels for a guy, I fell down the stairs in my apartment building.  And, I was no longer safe behind a car window, as my taxi ran a red light and we were hit by an oncoming car.

So, I decided to return to the familiar and after a long absence, booked a long-term follow up appointment at Sloan Kettering.  I hesitantly entered the main hospital to be greeted by the same lobby with twin escalators.  The rotating ascending steps carried me to main floor with the gift shop, cafeteria and elevator bank.  Linoleum, check.  Pastel colors, check.  Donated artwork, check.  My sterilized second home was welcoming me back with accustomed furnishings and a recognizable layout.  I was directed to my appointment in the outpatient facility and was greeted by a nurse who knew my whole history and the staff that had treated for me.  We discussed my oncologist, Sloan Kettering in the 80’s and the possible long term effects of my treatment.  My concerns were heard and blood work, an EKG and other functioning tests were performed.

As I walked home from my appointment, I began to think that the city that had swallowed me whole was starting to loosen to its grip.  I had found some comfort in the walls that had held my cancer and my cure.  And, as I was waiting at the edge of the curb for my crosswalk signal, a car pulled up and stopped at the red light.  A little boy had his face pressed to the car window and smiled at me.  I smiled back and we waved at each other.  There was only the tempered glass between us, but I knew that my side was where I wanted to be now.

 

Inside the Cancer Survivor’s Studio

* Posted on February 16, 2010 on Akoya Acupuncture’s original blog *

Since my first NYC apartment was around the corner from The Actors Studio, this is my homage to James Lipton and Bernard Pivot’s 10 Questions.

 1. What is your favorite word?  Monkey.

2. What is your least favorite word?  Retard.

3. What turns you on?  Independence.

4. What turns you off?  Neediness.

5. What sound do you love?  The sigh my dog makes before he falls asleep.

6. What sound do you hate?  The screech of brakes being pushed too late.

7. What is your favorite curse word?  F**k, of course.

8. What profession other than yours would you like to attempt?  Artist.

9. What profession would you not like to do?  Police Officer.

10. If heaven exists, what would you like to hear God say when you arrive at the pearly gates?   You were a good mother, sister, daughter, wife, friend . . . and a survivor.

 

Beauty is More than Skin Deep

* Posted on January 6, 2010 on Akoya Acupuncture’s original blog *

When most women get ready for bed, they brush their teeth, take off their makeup and put on hand lotion.  In addition to these nightly rituals, I put in my dental retainer, check my foot and put on a night splint . . . appealing to any potential male suitor I’m sure.  And, just like other women brush their teeth to combat cavities and take off their makeup to prevent breakouts, I use the retainer to maintain straight teeth despite six dental implants.  I check my foot for injury due to peripheral neuropathy and wear a night splint to help my drop foot, which has already had four corrective surgeries.  My bedtime routine is the most obvious for maintaining post-cancer physical complications, but in fact, most of my daily beauty routines and fashion choices involve my cancer survivorship in some way.

Manolo Blahniks?  Unfortunately, the foot surgeries have rendered my foot inflexible . . . so I stick to the kitten heels.  Belly bearing shirts?  A favorite in my European clubbing days have been retired after someone asked me if my laparotomy scar was in fact a C-section.  Long flowing hair?  My thyroid condition caused my hair to become dry and break easily . . . making a shorter do more manageable.  Low rise jeans?  The low slung denim would expose all of the spinal injection sites . . . and thankfully, I didn’t participate in the trend in 2001.

But, this is no Ugly Duckling story for the 26 year old single Manhattanite.  As I got ready for New Year’s Eve out on the town, my tight skirt showed off a depression on my side where a lumpectomy was done.  My V neck shirt proudly displayed the scars on my neck and chest and my hairstyle parted around a bump from the removal of a cancerous lump.  And I, rocked costume jewelry I received as a prize from the “good behavior box” at the pediatric phlebotomy laboratory in Sloan Kettering Cancer Center . . . all fashion choices due to my cancer survivorship and you can tell the MSKCC laboratory technicians that I was on my best behavior.

 

Fra-Gee-Lay

* Posted on November 30, 2009 on Akoya Acupuncture’s original blog *

Mr. Parker:  Fra-gee-lay.  That must be Italian.

Mrs. Parker:  I think that says FRAGILE, dear.

       – A Christmas Story
 

“Osteoporosis and osteopenia – isn’t that a diagnosis that grandmas and elderly ladies get?”I asked.  A simple bone density scan showed that my 26 year old spine and hip resembled swiss cheese more than cheddar.  And, although my osteoporosis was caused by steroid injections during my cancer treatments, the disease is showing up more and more in pre-menopausal women due to lifestyle factors. 

Lifestyle, huh?  I don’t smoke or drink diet soda, coffee or caffeinated drinks.  I rarely drink alcohol, get regular Vitamin D from sunlight and don’t lead a sedentary lifestyle.  So, for those of us who don’thave lifestyles predisposed to osteoporosis . . . what other alternatives are there to preventing osteoporosis other than eating swiss cheese?

The first and most obvious choice to me was weight bearing exercise.  I called my sister, the former personal trainer, to ask, “If there’s osteoporosis in my spine, how do I get my spine to lift weights?”  She laughed and simply informed me that I needed to do more exercises that bore weight on my joints – walk up to my fifth floor apartment, carry a weighted backpack while walking the dog and continue salsa dancing and pilates.

Secondly, I wanted to have a diet with calcium rich foods that didn’t include the dairy group or foods that have calcium added in after processed.  I turned my refrigerator and freezer green with spinach, peas, broccoli and brussel sprouts.  I added sesame seeds and almonds to a variety of dishes and had rhubarb pie for dessert. 

Third, as directed by my physician, I began taking a calcium supplement.  I tried several capsules, pills and chews before I settled on the right routine. One’s body can only absorb 500 mg of calcium at a time and need additional Vitamins and Magnesium to aid in absorption in the body.  Therefore, I take my 500 mg calcium capsule and multivitamin in the morning with aloe vera juice to protect my stomach and prevent nausea.  And, then in the afternoon, I eat one to two chocolate calcium chews to spread out my absorption throughout the day.

With the changes I’ve made, I would go so far as to venture that being diagnosed with osteoporosis has improved my outlook and lifestyle.  Salsa dancing, rhubarb pie and chocolate calcium chews – it’s hard, but somebody has to do it.

 

Martini . . . Hold the Olives, Please

* Posted on October 14, 2009 on Akoya Acupuncture’s original blog *

I was walking my dog, Martini, around the block the other day when a man approached us and asked about the limp. To which I responded, “Which one of us?” 

About five years ago, I went to an adoption day and a scraggly, skinny little dog curled up in my lap and fell asleep. Since that moment, he’s filled my life with endless kisses, barks and enjoyment.  And, although he has had his Marley and Me moments, Martini has gained some weight, manners and an occasional limp.  Research on Chihuahua-Terrier mixes shows that most have a genetic patella defect that causes them to limp.  In Martini’s case, he alternates limping right to left.  

On a daily basis, I see dog owners that resemble their dogs – from the portly scowling man with his bulldog to the curly white haired old lady with her poodle. Unfortunately, with Martini and myself, I don’t see the family resemblance.  My furry blonde companion with brown eyes didn’t inherit my hazel eyes and brunette locks.  But, what are the odds that the petite girl with the limp picks the petite dog with a limp? 

Individuals from any minority – race, class or disability – tend to bond over their commonality.  So, I’d like to think that Martini chose me on that adoption day because he sensed not only a nurturer, but a human that was more like him.

Another time that I was walking Martini, a man yelled after us, “Nice tail.” To which I responded, “Which one of us?”

Maybe we have more in common than I thought . . .