WHAT DOES CHEMOTHERAPY LOOK LIKE?

CANCER ANSWER TUESDAYS

from Allison W. Gryphon, Stage 3a Breast Cancer Survivor

photographs by Mary Elizabeth Gentle

“I didn’t know chemo came in a bag.” my dear friend Scott said to me a bit amazed. Yes. Chemo comes in a bag. I didn’t know either until I was looking at the bag with my name on it. Chemo also comes in pill form. There are over 70 types of chemotherapy drugs. My chemo therapy came in the form of a drip and was administered in my medical oncologist's office once every three weeks. Each appointment was around 7 hours give or take. I had a total of six chemotherapy sessions over a period of 4 ½ months.

 

I received my chemotherapy treatment at the same time as five other people. We all shared the same big room with a very attentive staff and were given a bit of privacy with the movable walls you see here.

As simple as it seems, this little monitor keeps tabs on the administration of the chemotherapy. The monitor and the chemo, for me, were all on one rolling stand so I could move around throughout the day if I wanted to.

Each chemotherapy station in my oncologist's office had a television and a piece of artwork that I could escape into on the wall. One of the most wonderful things provided was a movie, library so that anyone who wanted to pass the time and lose themselves in a movie could. One of the things I’ve been doing since my chemo experience is collecting new and used DVDs, CDs and VHS tapes that people are getting rid of and donating them to my oncologist's office. It's one of those little things anyone can do that helps a lot.

Needle in. Chemo on. First the oncology nurse would find a good vein in my arm. She would then thread the needle, meaning that she would get the tubing in and then take the needle out. One thing I was afraid of was sitting with a needle in my hand. I think it’s good for people to know that is not how it works. I had no idea. Once the plastic tube is in to administer the chemo, the needle is removed. This process was not the most pleasant in the world for me. I made a habit of turning my head away and talking to someone or putting on music and closing my eyes while the nurse prepped my arm for chemo.

For me, once the chemo began it was a fairly simple process. I never felt bad the day of treatment. It was always a few days later when I started feeling the effects of the drugs.

 

The day before, on and after chemo, I took a steroid to help diminish some of the side effects. The side effect of the steroid was weight gain and the puffy face you see here. That surprised me having been raised in a society that primarily shows chemotherapy associated with weight loss. It was not something that I was prepared for.

Watching the drip. It’s weird. Surreal. Sometimes scary. The thing about chemo was it provided a lot of time to think. It was hours of contemplation every three weeks. I did my best to keep it “me” time and really embrace that I had an entire day with my feet up to write, read, watch movies and TV and learn more about my treatment from my wonderful doctors and nurses.

Each chemotherapy station in my oncologist's office had a comfortable chair with a foot rest and many settings which allowed me to be as comfortable as possible during the process.

As a writer, the process of writing is my outlet. I learned from many of the other people I was in treatment with that even people who don’t normally write do so as an outlet. My hospital even offered free writing therapy classes as an emotional support for anyone fighting cancer.

Pillows. I felt strange with the chemo running through my body. It’s a tough one to describe, but I will say I found pillows to be a wonderful tool for feeling more comfortable and relaxed. I often had one in my lap to rest my arms and under my knees to ease the stress I was feeling on my back.


For more on chemotherapy, please visit Cancer Answers at www.thewhyfoundation.org


Cancer Answer Tuesdays 

What can I do about metal mouth? What is a good gift for a cancer fighter? How do they do radiation tattoos? How can I prepare surgery? What should I say to someone I work with who was just diagnosed? How am I going to get through today?

Every Tuesday, The Why? Foundation will present a small, but big cancer question and answer about fighting cancer day-to-day, hour-to-hour, minute-to-minute.

If you have a question or helpful tip, we want to hear about it. Please email us at info@thewhyfoundation.org.

A United Front: Filmmaker Allison W. Gryphon’s Battle with Breast Cancer

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

by Derek Martin Wade

If you were to ask Allison about her bout with stage III breast cancer she would not tell you about the three surgeries, six rounds of chemotherapy or month of radiation treatments she endured. She would probably not tell you about the tattoos burned into her chest that guided the lasers to the exact location of the cancer cells but she might tell you that she didn’t have a ‘bout’ with cancer. It was not a sparring match but a dirty fight, not a skirmish or a battle but a war.  Allison W. Gryphon; award-winning screenwriter, novelist and filmmaker brought every weapon in her arsenal to cancer and now she has two more; her forthcoming film What the F@#- is Cancer and Why Does Everybody Have It? and the TheWhy?Foundation.org

In Gryphon’s new film, What the F@#- is Cancer and Why Does Everybody Have It?, set to join the film festival circuit this summer, people are asked to describe cancer in one word. In my conversation with Allison, she said that when she asked her oncologist, who was at first stumped by the question, he pinpointed it in three words, “Enemy number one.”

Allison never expected to get “Enemy number one” let alone a cancer that had progressed as far as it had. She was in an age group of women who were less likely to get cancer; she was 38 years old, well below the 45 year olds and older group who were ten times more likely to be diagnosed with the same disease. In addition, a history of breast cancer did not exist in her family. Allison was also a self-admitted pilates addict and was in excellent physical shape. She cared about her body and what she put into it. She ate a healthy diet but was diagnosed with cancer anyway.

Three days after her diagnosis, Allison sat in a coffee house drinking the best coffee she had ever had and she felt “wide awake.” Everything that mattered, mattered so much more. She would no longer live her life the same and nothing would be taken for granted. It was a wake-up call.

Allison W. Gryphon did not live her life preparing for a battle with cancer but when cancer did come she was in top fighting form. German philosopher Friedrich Nietzsche said, “The best weapon against an enemy is another enemy” and Allison was about to become breast cancer’s worst enemy. Allison believes that it is her healthy lifestyle that contributed to her success and gave her the strength to carry on through the rigorous chemotherapy and the cancer cell-killing radiation. In addition, she enriched her body by redefining her healthy diet by “eating clean;” a diet of organic, unrefined, minimally processed and locally grown food including antibiotic-free and growth hormone-free meats.

Allison believes that a cancer patient has to be a cancer fighter, to be proactive in their own recovery and to ask for help. She says “Fighting cancer is a team sport.” Allison’s team includes an army of friends and the The Why? Foundation.

There are hundreds of breast cancer websites that provide information in black and white text, statistics in graphs and pie charts bordered by pop up ads selling everything pink. Websites like these are filled with the ‘whats;’ What is Cancer? What are the symptoms? What are the treatments? What are the drugs and what are the chances? Nothing in these websites, including the website for the largest fundraiser for cancer research in the world aside from the U.S government, offers support for the newly diagnosed, provides emotional support for the recovering patient and answers the question ‘why?’

Allison Gryphon’s The Why? Foundation strives to provide a place for cancer patients and survivors to find answers, seek out support, community and real help. This place is an outlet for Allison’s experience as patient and survivor offering guideposts for others as well as a place for other sufferers and survivors to share their experiences. The Why? Foundation tells the recovering patient what to expect after treatment like how the simple things in our daily lives suddenly become very difficult.

There were slightly more than 230,000 new cases of invasive breast cancer diagnosed in the U.S. in 2011 of whom Allison W. Gryphon was one of them. That year almost forty thousand women died from the disease in the U.S. alone. That’s more than all the highway deaths and almost three times the homicide rate in the U.S. Allison produced her film for those cancer patients recently diagnosed and the additional 500,000 and more who are in varying stages of treatment as a means to create a united front to combat the deadly disease.

Today Allison W. Gryphon is believed to be cancer-free, is checked quarterly and is still fighting.

www.thewhyfoundation.org

Helping Others With What You've Got: How Alia Let Go Of Her Locks

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

by Why? Foundation Street Team Member, Alia Tarraf

I love having long hair.  Its part of my personality.  It tells the world a big part of who I am and what I'm feeling on any particular day.  I can wear it part way up on days I want to feel like a Disney princess.  Or pulled back in a bun when I mean business.  Or a messy ponytail when I feel artistic and creative.  Sometimes I even wear it down just because I want to hide from the world.

Like so many women, my hair is a part of who I am and very often, I've allowed it to define me.  We're told that its a part of our beauty.  And our beauty is so wrapped up in who we are and can unfortunately dictate our confidence levels.

So when I saw my friend, Julie, with a freshly shorn bob at a party after college one night, I marched up to her and demanded to know what happened to her long beautiful chocolate brown hair.  She replied nonchalantly, "I gave it to Locks of Love."  Oh great, some hippy dippy charity.  "What's that?"  I asked, bewildered.  "It's a charity that makes hairpieces for people who don't have hair due to a medical condition."

No.  No, I was not going to feel guilty for this.  Julie wasn't condemning me at all, she just simply told me what I had asked.  She had almost shrugged.  Shrugged off that she didn't care her long hair was gone.  Now, I know this all might sound incredibly vain and silly, but I had somehow linked my worth to my beauty, i.e. my hair.  Julie was helping someone else, and had the self-confidence to do it, and I didn't.

I went to bed that night and couldn't stop thinking about it.

I decided to go on the Locks of Love website, just to check it out.  Not that I would do anything.  It turns out that Locks of Love not only provides hairpieces for people who don't have hair due to a medical condition, they specifically help disadvantaged children under age 21 suffering from long-term medical hair loss from any diagnosis.

 "Our mission is to return a sense of self, confidence and normalcy to children suffering from hair loss by utilizing donated ponytails to provide the highest quality hair prosthetics to financially disadvantaged children.  The children receive hair prostheses free of charge or on a sliding scale, based on financial need."

Seriously?  Who are these people?  Because they just turned me into a jackass in about two seconds.  Was I really going to let my vanity and insecurity come before a disadvantaged child with no hair because of a medical diagnosis?  Who had I become?  My problems suddenly seemed super lame.  1. These kids are dealing with a medical condition, from alopecia areata to cancer.  2. They lose their hair because of it.  3.  They don't have the means to fix it.  Yeah, it was time to get over myself.  I needed to do this and if I lost my attractiveness, well, hopefully it would grow back.

I walked into the salon the next day.  I had googled salons in my area that were associated with Locks of Love and this one gave a free haircut with a hair donation.  They have them all over the country.  The hairstylist braided my hair, measured the minimum 10 inches required to donate, asked if I was ready, and cut it off.  I'm not going to lie, I may have cried a little.

The salon sent it in the mail to Locks of Love for me the next day.

I'm not saying you need to go out and cut off all your hair.  But I learned there are so many ways we can help others.  Something as small as donating your hair can go such a long way and mean so much to someone else.  This was a wake-up call.  Sometimes I get so focused on myself and can't see past my own nose.  Which, by the way, I wish was smaller.  But seriously, when I remember that so many others have been dealt a much harder hand, I am so humbled.  And I can help.  Even if I don't have the means.  I can donate my hair, I can run an errand, I can volunteer.

And you know what's funny?   I liked my bob.

~

Click Here To Learn More About Locks of Love.

A reminder from India Arie - I Am Not My Hair

MOM'S GOT CANCER - CHAZ SALEMBIER RECALLS GETTING THE NEWS AT THE AGE OF 8

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

 

written by Chaz Salembier 

Eight months was still a lot of time, I remember telling myself. With fuzzy kid-logic – in which hours are days and days are months – I had convinced myself that this was such an infinitesimally small problem that like an ant under my shoe I shouldn’t give it a second though. In fact, I should ignore it. Elephants in rooms, after all, only exist if you let them. So I turned a blind eye toward it. In the 90’s, when soda was cheap and video games were starting to make it possible to live lives you never thought existed, it was easy enough to distract myself. Out of head, out of mind. Eight months was a long… long time.

I hated school. I mean, really, what kid didn’t, but school was school. I remember spelling it “skool” in my book reports as a juvenile middle finger to my grade school teachers – you can’t get to me. You can’t teach me (belligerent eye roll). My mother drove me to school every morning. It was a short drive, maybe two minutes, short enough that most days I had to walk. But two minutes is an awfully short time. Short enough that it’s difficult to convince my mother that my stomach is feeling particularly grouchy. I complained heavily, with plenty of nasally whine and, sighing, caving under my insistence; she drives past the front door of the school and takes me home. I play it straight, don’t blow my cover, on my way home, which is key to finagling my way out of another day of classes.

There was no official family announcement that I can remember. As an eight year-old, the finality of death was still a relatively new concept and one that still seemed absurd. I didn’t even quite know what was happening to my mother. She had leukemia, I knew, something nasty to do with her white blood cells, but most of her disease was nothing more than whispers behind closed doors. I don’t know if my parents were trying to keep me in the dark intentionally, to protect me, or if I genuinely didn’t understand. All I know for certain is I didn’t know for certain.  

We arrive at home, and I’m told to lie in bed, which I do because, hey, lying in bed is better than sitting at a desk. My mother brings me a bowl of soup and, to pass the time, she reads to me. This is not an uncommon sight at my house – me lying in bed, my mother in the chair next to me, some wild, large, philosophical fantasy novel, with enough imagery to keep my impatient and TV-trained brain occupied. Today, it is the final book in the Chronicles of Narnia. I sip soup and listen to her read The Last Battle, as Aslan – the great a noble lion and quite unsubtle metaphor – judges all of those who have fought in the great battle. The good guys are invited to join him in His country and, with that, Narnia comes to an end. Father Time calls the stars down from the skies, he puts out the moon and the sea washes over the land. Narnia is no more. My mom has read this book to me a few times. She always pauses at this part.

Around this time I started seeing Mrs. V, an older woman who looked as though she was plucked from someone’s garden. She invited me to her office once a week during school and, at the time, I was none too concerned why as I strutted room to the envy of my classmates. Mrs. V and I would sit in her small office where I would fill out puzzles, draw, and do visual word challenges. I thought I was pretty damn special at the time. As though I might be just awesome enough to play for an hour a week with Mrs. V while answering her trivial and banal questions about my family. I would later learn that Mrs. V was a grief counselor, who was preparing me for the death of my mother.

I spend the rest of the day walking around with my blanket around my shoulders, trailing after my mother like the world’s most annoying jet stream. My stomach feels fine. It always does. And she knows this. Yet I’ll pull this stunt a few more times over on my mother in the coming months. Each day on the short car ride to school I’ll groan and complain with the bravado of a Shakespearian actor on his deathbed. And day, I’ll wait in bed for my bowl of soup and whatever fantastic book has been dug up from our basement library. What I won’t admit at the time, however, is that this isn’t about skipping class, the joy of knowing my classmates are stuck doing math workshops in Home room, or playing coordinated tunes on hand bells in Music. No, staying home from school isn’t so much about “school” as it is “home.” Because home is where mom is. And any day more I get to spend with her is a better day than one spent away. Because these days go by so, so very quickly.

Eight months became weeks, became days. For reasons that she can explain better than I, eight months came and went with little ramification. Throughout the rest of my childhood, I was told not to get my hopes up, not to expect her at my baseball game come next spring, or to welcome me home from my driver’s test, or even at my high school graduation. But as I write this, having graduated from not one but two educational institutions, she is skiing somewhere in western Colorado. This past summer, she was told that one more year of recession and she can stop taking her medication. Suddenly, the rest of her life seems like a long… long time.

In 1995 Chaz’s mother, Janice, was diagnosed with Chrinic Mylegenous Leukemia and given less than a year to live. Proving cancer was messing with the wrong lady, Janis is currently happily taking on the world and enjoying every moment of every day. To read the short story THE BLAST CELLS written by Janice about her cancer experience please click the link below.

http://thewhyfoundation.blogspot.com/2012/08/the-blast-cells.html

Bronwyn the Brave by Allison W. Gryphon

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

 

I wrote this story for my A.W. Gryphon Bits & Pieces Blog on 11 September 2011. It’s strange looking back on that now. That date came four days after my fifth of six chemotherapy sessions… and four days after I lost my dear friend and step-mom to brain cancer. I was bloated, bald, desperate for reconstructive surgery, being riddled with hot flashes and night sweats, exhausted and full of hope. When you are alone with your soul, that what’s you have to decide, are you willing to hang on to hope? That was never an issue for me. I was full of hope and fight like I didn’t know existed. I was also full on honesty and truth on a level I never knew existed. I’d always been a straight forward person, but with cancer it was magnified and I’m grateful that it still is. It’s that magnified truth that inspired this story of Bronwyn the Brave.

~

Brave. It’s a big word and honorable one. A crown that is never taken lightly by those on the giving or receiving end of it. Brave was a concept that Bronwyn had always admired. That she felt was the greatest compliment to anyone whom it was bestowed upon. A brave person was one to be celebrated and praised. Brave was a quality Bronwyn had a great deal of respect for accompanied by an adoration which she felt was welcomed and treasured by anyone on the receiving end of it no matter who or where the compliment came from. Until, that is, Bronwyn had a complete understanding of what one had to go through to be deemed, brave. Until the person on the receiving end of the title of brave was her.

Brave is one thing to someone presenting the compliment and something altogether different to the person receiving it. It isn’t that it is good or bad or negative, not at all. It is simply something you can’t imagine until you yourself have been deemed, “brave.” To date, that was Bronwyn’s largest lesson and realization in her journey.

She in no way wanted to complain, not at all, Bronwyn only wanted to be understood and was therefore always careful with her words when trying to explain her feelings. It was an honor for her to be thought of as an inspiration and to be held in such high esteem. It was taking quite a bit of getting used to as in Bronwyn’s mind she was simply rolling with the punches life had decided to send her way. She wanted to help and empower everyone she could, but what Bronwyn also wanted was to feel loved and to be loved, not because of what she was doing or how she was doing it, but because of who she was. Who she was completely. With all of the courage and fight she was exhibiting, for Bronwyn she was simply walking down the only path available to her. She was still a normal woman with dreams of love, career, romance and adventure. She lived for quietly watching the sun set, walking on the beach while the daylight kissed her skin and curling up under a warm blanket on a cold afternoon to watch movies and maybe order a pizza to enjoy with a good friend or a sweet love.

Bronwyn was many different things. Brave was only one of them. Brave wasn’t even something she realized she was until people began telling her that on a daily basis. It was the label that changed everything for her. For her core group of friends and family, brave was an addition to the Bronwyn they already knew. For those less close to her and just coming into her life, brave defined her or so it seemed in most cases. In the beginning that was alright, then slowly, but surely Bronwyn realized that brave put her in an invisible glass box on the shelf of a virtual museum where she could be celebrated and admired, but not touched or hugged or loved or understood for who she was as a complete person. As much as she understood and wholeheartedly appreciated the new phenomenon, the label of brave was the loneliest thing she had ever experienced in her life. It was truly the definition of a double-edged sword for her because as much as it tortured her it was the greatest compliment she had ever known.

In many ways Bronwyn had become untouchable to others overnight and that frightened her. As elated as she was to have become a brave and inspiring being to so many, knowing that there was no going back, Bronwyn could only wonder who could see past that and who would be able to come into her life beyond the brave and truly love her. The brave her, the scared her, the quiet, the adventurous, the annoying, the playful, the good, the bad, the ordinary… all of it. How many friends would she have? How many would lose sight of her? Who would someday walk through an Italian vineyard with her simply for the soft company, taste of the grapes and peaceful bliss of the moment without it being about walking beside the brave that defined her in so many ways to so many?

It was in fact a double-edged sword and the sword belonged to Bronwyn for the remainder of her existence. It was something that could not be changed and something that Bronwyn had no desire to change. Her experience and outlook was so incredibly different than what the general consensus from the outside looking in seemed to be. Bronwyn was happy with so much of what cancer had brought into her life. Everything was different. More exciting. Better. Nothing was out of reach. Impossible was a concept that no longer lived in her world. She was in the middle of experiencing the scariest, most empowering and most liberating gift that life would ever give her and she knew that. The diagnosis and journey through the fight had given Bronwyn a perspective on life she never would have had and which she held close to her heart, understanding all the while that cancer too was a double-edged sword which angered and freed her to extremes beyond comprehension.  

There were no decisions or rationalizations to be made. There was nothing here nor there to be done other than wait and see who did what and when as life continued. For Bronwyn all there was to do was express herself in the manner that felt most comfortable to her, a manner that allowed her to be. On some days that would be hard, on others liberating. It was all part of accepting the woman she was and the somewhat mythical character she was becoming. It was the beginning of Bronwyn the Brave.

awgryphon©

THE BLAST CELLS

In 1995 Janice was diagnosed with Chronic Mylegenous Leukemia and given less than a year to live. Proving cancer wrong on a daily basis, Janis is happily married, a proud mother and enjoying every minute of every day.

A Short Story By Veteran Cancer Fighter Janice Throup

The blast cells—the bad guys, the ones that were going to kill me—were perfect circles with little purple halos from the dye they used to stain them. The good cells—the ones that had matured properly—were misshapen. They looked aged and tired in comparison with these new little babies who hadn’t yet differentiated.

I was struck silent. This was not what I had expected. I was diagnosed with leukemia in the days when the Pac-Man visualizations were popular. You were supposed to imagine Pac Men (from the old video game) eating the bad cells. I’ve never been very warlike, so the exercise had no appeal to me, but I thought maybe I should take a look at the enemy.

My doctor, already frustrated with me because I had refused the only real chance of recovery (a bone marrow transplant) was persuaded to let me look at my marrow in exchange for my promise to him of more bone marrow biopsies (“just a little prick” he called them, but they seemed horribly invasive to me). Perhaps the deal appealed to the scientist in him. He left his other patients waiting and took me down to the bowels of the hospital to see my blast cells through a microscope.

I felt something shift inside of me when I saw these purple wonders. They looked so harmless. It struck me that they were just trying to live their little cell-lives. I mean, something had gone wrong because they weren’t following the normal pattern of white blood cells, but they looked … well, happy.

Chronic Mylegenous Leukemia doesn’t hurt. At least in the beginning. Because nothing hurt, I was, at first, disinclined to believe my diagnosis. When my doctor pressed upon me the seriousness of my condition—“only 2% of people with your condition are still alive in two years”—I began to feel betrayed by my body. It had always served me well and I had always loved it. I had studied ballet, taken up mountain climbing, been a star yoga student. And now, in the very marrow of my bones, it was trying to kill me.

But there in the hospital basement, as I looked at those little purple baby cells, I felt overwhelmed with Love. I simply couldn’t get my mind around these babies being the bad guys. They were young life, full of promise, full of beauty. I felt myself falling in love with them, and all of a sudden, my body and I had a reconciliation.

Along with this feeling of invasive Love there came a flood of all those wonderful corollary consolations—the certainty that everything was just as it should be, that I could relax and let life unfold as it would, even if it led to death.

It didn’t. Now, I’m not saying that my attitude brought on healing (though the timing might lead one to believe so). I am saying that for me, acceptance gave me my life back—gave me back the feeling that neither my body nor life was against me. And I realized that the enemy wasn’t Death—it was Fear.

“Perfect love casts out Fear.” Didn’t Jesus say that? It’s true. And maybe, just maybe, when Love prevails, cells realign themselves. Or they don’t but that’s OK too, because what we’re about on this planet is learning how to love. And if that lesson comes through illness, even through terminal illness, it’s still OK as long as we learn it. 

Click here to visit THE WHY? FOUNDATION  and learn more about

our WALL OF SMILES & $5 Cancer Documentary Fundraiser

http://www.thewhyfoundation.org/wall-of-smiles/

HARLEY, THE CANCER FIGHTING GOLDEN RETRIEVER

by Chaz Salembier and Allison W. Gryphon

The average age of a Golden Retriever is ten to twelve years, so when at the age of six the beloved Harley was diagnosed with cancer, no one knew what to expect. All that her owners, Pat and Bill, were sure of was that their Harley was a lover and a fighter. She would do what needed to be done. 

The mast cell tumor, which Pat discovered in Harley’s leg, led to surgery and eighteen rounds of radiation. Harley shined through the operation. It was radiation that was the tricky undertaking. The thing with radiation is the patient must remain still. It’s not easy for anyone and sedating Harley for eighteen treatments was simply not an option. There was concern, but hope, and somehow Harley knew what to do. She stepped up onto the table for every appointment and remained still, all alone in the room, while the radiation zapped her cancer.

The radiation burned Harley and she has the scar to prove it, but she wears it like a badge of honor and has recovered full use of her leg.

Four years after her cancer fight, Harley turned ten. Shortly thereafter Pat and Bill found another tumor. It was on the back of Harley’s paw.

Once again, Harley was faced with surgery. Because of her age and concerned with her quality of life, Pat, Bill and the vet decided not to put Harley through radiation therapy.

Harley sailed though surgery with flying colors and again, made a full recovery.

This month, Harley will turn fourteen. To this day, she still enjoys rides in the car, the occasional steak dinner, and spending time with her younger sister, Zelda.

For Pat and Bill, Harley is still the same wonderful and loving dog she’s always been.

For all of us who have had the opportunity to meet her, Harley is an inspiration and a hero.

Click here to visit THE WHY? FOUNDATION  and learn more about

our WALL OF SMILES & $5 Cancer Documentary Fundraiser

http://www.thewhyfoundation.org/wall-of-smiles/

FAMILY, FASHION, SURVING HODGKIN’S LYMPHOMA AT TWENTY FOUR AND FIGHTING AGAIN AT FORTY EIGHT

Maria and her husband Peter photographed on June 9, 2012

by Chaz Salembier and Allison W. Gryphon

As a young woman, life for Maria Rimkus was all about fashion, working for hot designers like Pepe Jeans in Madrid and Tommy Hilfiger in New York. Just when her career was taking off Maria got the call that changed her world. In 1990, at the age of twenty-four, her battle with cancer had begun.

Maria was far from home, living and working in Spain, when she found a lump on her collarbone.  It was Hodgkin’s Lymphoma. Maria returned to the states and went through three months of intensive treatment and radiation. She became a familiar face at Boston’s Dana Farber Cancer Institute, first as a fighter and later as a survivor going in for checkups.

Moving on with life, Maria fell in love with Peter McLaughlin. They were married, settled down in Florida and shortly thereafter brought a pair of beautiful twin boys into the world.  Cancer-free and happy, Maria was living life to the fullest.

And then, this past April, something changed. Maria wasn’t feeling like herself.

Peter took her to the emergency room. Maria’s doctors in Boston were called. The next day Maria and Peter were on the first flight out of Florida. Soon thereafter Maria was diagnosed with cholangiocarcinoma, a rare cancer of the bile ducts and liver. She was given six months to a year.

In May, through her dear friend Kelly Schandel, Maria and Allison W. Gryphon were introduced. The hope was for Maria to participate in Allison’s documentary What The F@#- Is Cancer and Why Does Everybody Have It?. Logistics and treatments for both women prevented an interview for the movie so we found another way to share the strength and determination of this amazing woman.

Meet Maria. This is her own story in her own words as told on June 10, 2012.

WHAT KIND OF CANCER ARE YOU FIGHTING?

I was at the Dana Farber clinic last November for testing and everything was normal.

In April, I was diagnosed with cholangiocarcinoma,  a rare cancer of the bile ducts and liver. They think it may have a small metastasis to some lymph nodes. This will be confirmed after my next PET and unfortunately means I am not a candidate for a liver transplant. My prognosis is not good.  The doctors said if I live a year that would be considered a ‘homerun’.

IS THERE A HISTORY OF CANCER IN YOUR FAMILY?

There is a little history.  My sister had thyroid cancer in 1991, the year after I had Hodgkin’s.

DO YOU KNOW WHERE YOUR CANCER CAME FROM? 

Yes.  When I had Hodgkin’s, the doctors marked me with small tattoos where the radiation went in for precise location.  My main tumors are directly over where the radiation was done; therefore what saved me twenty-four years ago is what is killing me now.

DID YOU THINK YOU WERE AT RISK? 

Yes, due to my past history, I have always felt susceptible to another cancer.

WHAT TYPE OF TREATMENT HAVE YOU BEEN THROUGH AND WHAT ARE YOU FACING? 

I have already done one round of six cycles of chemotherapy.  I will probably do this to extend my life expectancy for as long as possible.  If I get lucky and they let me have a liver and bile duct transplant, I may have a better chance, but that would mean that the cancer had not metastasis as far as they now think.  I am also on many medications, and two shots a day for blood thinners, as they have found blood clots in my leg.

HAVE YOU EXPERIENCED ANY SIDE EFFECTS FROM TREATMENTS OR SURGERY?

My hair has thinned, but ironically even though I am on one of the harshest chemo treatments, most people do not lose their hair on this chemo.

HOW IMPORTANT ARE YOU FINDING DIET AND EXERCISE IN GETTING THROUGH THIS? 

I have always been athletic and worked out, but once I started feeling tired  I was only doing yoga.  Since I was diagnosed I have not worked out at all, but am hoping that after a few more sessions of chemo I will find the energy to start doing light exercises.

As for diet, I have read so much. I love the book AntiCancer.  I’ve met with a macrobiotic specialist and nutritionist.  The macrobiotic diet, although it might be beneficial for a healthy person and good in the long run, is not working for me at the moment.  I need to gain weight and put on as many calories as possible, which just is not happening on a macrobiotic diet.  I think you should eat a plant-based diet, but some organic meat is also fine. 

HOW ARE YOU FIGHTING CANCER EMOTIONALLY?

I am mentally strong and positive, which I really believe is half the battle.  I have such a strong support system of family and friends, and have been very open and honest about my fight with cancer.  We are an open book, with my husband writing in a blog to keep everyone updated.

I feel at peace, thinking that I have been given an extra twenty-four years of life, in which time I met my wonderful husband and had my beautiful twin boys.  That does not mean I am not going to fight my hardest to beat this and watch my boys grow up.

WHAT ADVICE DO YOU HAVE FOR OTHER CANCER FIGHTERS?

Keep a positive attitude, go one day at a time so as not to be overwhelmed, and find something good in everyday!

WHAT ADVICE DO YOU HAVE FOR THE MEDICAL PROFESSION?

Be compassionate, and try to put yourself in the position of the patient.

WHAT ADVICE DO YOU HAVE FOR FRIENDS, FAMILY AND CO-WORKERS OF CANCER FIGHTERS?

Be supportive and let the cancer fighter know you are there for them, but also give them their space.  A lot of times we don’t want visitors, and feel like we have to entertain when people come to visit.  We need our rest.

HOW DO YOU FEEL ABOUT THE FUTURE? WHAT ARE YOUR HOPES AND DREAMS?

I am positive!  I hope to have a great future and want to watch my boys grow up.  I am hoping I will feel strong enough to go to my thirty year high school reunion on the west coast this summer.  My husband and I also want to take the boys to Costa Rica for New Years and celebrate our tenth wedding anniversary there, which is where we got married.

FOR YOU IN ONE WORD WHAT IS CANCER?

Insidious.

As of today Maria is fighting the fight and feeling good with the help of acupuncture and her amazing support system which you can learn more about at Caring Bridge.

http://www.caringbridge.org/