JoyceGornickBW.web_

Survivor since 2004…

It was March 18th, 2004, a brilliant day. A few weeks before that, I had seen Dr. Paul Salmen. He asked me if I had done a mammogram with someone else. I said, “no. You’re my Doc!” He informed me that I hadn’t had one for four years. I was too busy running my flower shop, Joy-Ann Creations, Inc. If was going great guns. I was trying very hard. Lots of long hours. I had some help, but not over abundanced by any means. He and I talked about it, and Nichole walked in with an appointment. I didn’t have a choice! Of course, being Joyce, I canceled the appointment. Something took priority. That’s usually the way my life goes. I did, however, make another one.

It was a couple of weeks later. I went in at 8:30 a.m. Cindy did the mamo. This was on a Tuesday. On Wednesday, a.m. Cindy called. She asked me to return on Thursday. They were not please with the pictures. I agreed. We joked. I showed up at 8:30 a.m. on Thursday. That was the brilliant day of March 18, 2004! My life was due to change. I just didn’t know it! I was diagnosed on the spot with a possible Lobuale Carcinoma, left breast, under my arm. This was very close to the lymph nodes.

They proceeded to call Dr. Ross. I saw him for an ultrasound on Friday a.m. He confirmed that the diagnosis was suspicious. He scheduled me for a biopsy, and, as it turned out, surgery early Monday a.m. When he got in, he saw it. He removed what he could. The next Monday, I was back to remove more tissue, check the lymph nodes,etc. The following Monday, I was back. Some lymphs were removed. Thank the Dear Lord, they were not infected. I ended up having a lumpectomy, some nodes removed, and was set up for eight and one-half weeks of radiation. I am extremely medicine unfriendly. Dr. Paul calls me his “Pharmaceutical Dilemma!” We were trying the radiation first.

In between all of this, our Daughter, Juliann, was scheduled to be married on April 24th, in Maui, Hawaii. Oh boy, did that put a damper on things. With Joy-Ann Creations, Inc., I had 32 weddings planned for that season, March through December. I was in shock, I’m sure! My Family and I went in to see Dr. Jaffery. He assured me that all would be well. Dr. Ross said, “You’ll be ready to go to Hawaii, but I must do the surgery. We can put off the radiation until May. We cannot put off the surgery. For the first time in my life, I really did not have control. I had no choice.

The sequence of events were, three surgeries, my daughter’s wedding, which I was determined to do, after all, over a course of about 15 years, I had done hundreds of wedding, and now to not be able to do my own daughter’s? This was not an option in my life! I did it all!

On May 5th, I began radiation. At first it was okay. As the time passed, I was leaving the shop at 2 p.m. each day, driving to Edwards, sometimes with just me and my dog, Turner Malone, not realizing how important this was! Turner was my “Flower Dog!” He spent each day with me, until late day, when Joe, my husband, would pick him up. Oh boy, he was a loyal partner, and my best friend. He watched me cry right by my side, he tried to make me smile, when he sensed I was not doing so well, and as in the picture, he gave a howl of, “We’re OK!” I still had a business to run. I had people to service, brides to please, everyday happenings, etc. I was way too busy to do this! However, those fine folks at Shaw Regional Cancer Center, Edwards, Colorado, are on top of it all. There was Andy, he scheduled my appointments. If I called to cancel, it was No! No! See you at 3 p.m. The crew was great. Dr. Hardenberg is very concerned, accurate, still seeing me, now once a year. I was in denial, however. I have had many different surgeries and illnesses in my lifetime, but none quite as serious as this one.

Well, I made it though! Several family members and friends helped me through the rough times. I completed all of the treatment, did 32 weddings that year, including our Daughter’s and our Son, Jim’s. I don’t remember a lot of the happenings. I think I was in a fog most of the time.

My shop had to be sold. I needed to slow down, so they told me. I did that, but I’m not sure about the slowing down. I don’t do that well!

I just saw Dr. Hardenberg in November, 2008. After taking several pictures, she and Dr. Ugarri, graduated me to the next step. It will be five years on March 18th. It has been quite a trip! I still have some down times, but overall, I thank God for helping guide me to better health.

Our dog, Turner, is getting older, now. He has had quite a life. My husband, Joe, had open heart surgery in 2001. Turner was his life saver. He would, everyday during his recovery, ask to go for a walk. Just as if he knew it was necessary. He and Joe had a front page picture in the Post Independent, labeled, “Dog Walks Master Back to Health!” He was with us every step of the way. We are now there for him, as he approaches 16 years old, having some eye problems. He still loves to romp and play with our new dog, Scherlok, a Miniature Schnauzer. Scherlok is sure fun for him. We are glad we got him for Turner. All is going great. A few bumps in the road, but over all, we’re living life. As I said, “Life is a painting…choose your colors and create it well!”

Joyce Louise Gornick and Turner Malone, My “Bud”
(Joyce still doing well. Turner passed away July 2, 2009 at age 17 years.)

BetsTree_web_1

Dear Bets…

Where to begin? Other than Mom, I’ve known you longer than anyone else on the planet! Growing up in Dover was a childhood that was hard to beat… for a while it was just the two of us and the only thing standing between us and our imaginations were those pesky parental controls such as naps and meals… I remember the Roy and Dale afternoons (you actually alternated between being Roy and my horse) and the bike rides up and down Strawberry Hill Street… especially the ones we had just before a hurricane was about to hit… remember the wild wind and us screaming as we peddled faster and faster… and that stupid Airedale that Charlie Bean had that would try and bite us every time we rolled past their house? Then came Nick and Amy, and our universe doubled… sometimes double trouble…

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but you always seemed to have a way of managing things with a gentle hand, a gift you had all your life. It was always hard for me when we were both at Beaver because you were so good at everything. A skilled athlete, tremendously diligent leader and universally popular young lady. Let’s just say I was a late bloomer… so off I went to boarding school, and our friendship shifted… until Colorado, where we pretty much picked up where we left off… both of us in college and starting to manifest the different ways in which our adult lives would progress… You got a dog, I got her puppy… we traveled together, visited, and both settled into our separate lives. Next thing I know, you’re living in Jackson Hole Wyoming in a teepee in the middle of nowhere and being surrounded each night by a pack of serenading coyotes… I lost touch with you when Mike and I moved on to Seattle, but I started to hear troubling stories about you, and being away, I could only imagine… When we moved back east and settled in New Hampshire, you came up for visits, but it was like there was a thickening cloud around you and I could only see through in glimpses…

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And this is the part I want to celebrate with you… sometimes courageous lives aren’t headliners… sometimes the battle of a lifetime is just to be normal like most people are without even thinking about it… little things we all stepped over without a thought were large walls between you and the world, but you never turned back… you never stopped striving for a place beside the rest of us… and you never quit even when you had achieved a life of independent living in Boston. In your recent years you were relational glue for the family and beyond… You were often the first to know and always the faithful caller… your caring and generous heart manifest itself in the small things you did…
There is only one Christmas card so far on our front bureau… the first of the season… it is from you… on the front, all it says is “Peace”.

With love, Sue…
your old Pal from the Erie Canal…
…drink to the love of joy!

KenneyKiln1_5962_BW_1

Survivor since 2009

I was on my way to a national ceramics conference between flights in the Denver airport. I sat down to eat my tuna fish sandwich and, as I slipped off my leather bag from my left shoulder, my hand grazed my chest and I thought, hmmm, that feels different, like a muscle I hadn’t noticed before. For the next five days I pretended I hadn’t noticed this weird bulge on one side and not the other.
Two weeks later, when I heard the words over the phone, “It seems that you do have a small breast cancer…” well, it just felt and sounded surreal.  It was so hard to put the words, “I have breast cancer,” in my mouth. They just didn’t fit. My friends didn’t believe me at first. Even now, seven months later, I still sometimes feel like this isn’t happening to me, like I am watching someone else go though this life changing experience.  But it is real and I know it. Going through chemo removes any doubt about how real this experience is! Everyone says I am doing great and that I look great and I don’t know- how am I supposed to look, act and feel? How does one dress for chemotherapy? I have just tried to keep doing what John and I have always done daily whenever possible, especially exercise and laugh, if at all possible.
So what have I learned? Or, more accurately, what am I learning?
Gratitude, for so many things…
Sometimes I am just overwhelmed with a sense of gratitude for the simplest and the most profound things, often all at once: For another day of life, for the astonishing beauty around me, for the walls of Glenwood Canyon and the way the sun hits the rock faces creating different dramatic effects of light and warmth daily. I am enchanted by the multi-colors of the November grasses along the Eagle River as I drive daily to Edwards for radiation treatments. I give thanks for every single card, phone call, email, meal, visit, car ride, offer of help from friends and family, and for every kind touch or word from medical caregivers. I am steeped in a sense of gratitude greater than I am, impossible to contain or adequately express.
Also, I am learning more about Beauty.
I feel that I am finally understanding with my mind, soul and body what beauty is all about and why I have spent most of my life as an artist attempting to serve and seek and create beauty. I am one who used to say that I didn’t need a life-threatening illness as a wake-up call to really see what’s important in life like friends, family, beauty, music, art, nature, etc.  Maybe I didn’t need it, but I do know that I am now more alive and absorbing love, music, art and nature with my whole being. I have not achieved all I can and want to do in my life and career. I still have unused cards on the table that I hope to play before I run out of time. I want to use color and paint, words and imagery in ways I have never done before.

I am also realizing in a deeper way, how important and life-saving, daily Outdoor Exercise is for me.
This may sound trite but exercising outdoors as much as possible through my treatments, whenever I have felt well enough, is the one thing that has helped me the most. I have surprised myself at what I have been able to do even during chemo and radiation. I swam a mile a few times a week, climbed hills and went for long walks alone or with my husband, John McCormick, and our dog, Archie. We even snow shoed up a mountainside recently. Often I have felt like I would rather lie on the couch but I have pushed myself to get outside and be active and I always feel so much better afterwards.  Nature is my cathedral. Exercise is my walking meditation feeding my soul, invigorating my body and dispelling the heaviness of depression that this illness can bring along with it.

I do not feel afraid, although the diagnosis was fearful. I do feel gratitude for life and a strong sense of connectedness to my fellow humans and nature. I also have a strong desire to give back, to use this experience to help others in some meaningful way.  In an odd way, cancer has been a gift, literally extending and expanding my life, giving me some dear new friends, deepening and renewing long-time friendships, and giving me incentive to change and expand my studio work.

One of my favorite quotes recently:
Everything changes, everything is connected; pay attention.  (Jane Hirshfield)

I am paying attention.

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8 Aug 09…

I had a bad feeling the moment I saw the tiny little figure, broken in many places, lying flat on it’s back in the middle of the bathroom window sill. “Must have fallen,”  I murmured to myself, trying to dismiss the haunting image with a rational explanation. Sue’s collection of miniature dolls is housed in an old printers type tray that hangs on a nearby wall, each doll looking out at us from its’ own compartment.

But the doll lay there for a two days, staring at me every time I entered the room, feeding a knot of dread that has lived in my stomach since Sue was diagnosed with melanoma three and a half years ago. The knot expands and contracts, often lying dormant for months at a time, but it’s always there.

Different things, just little reminders, can wake those fears. But the symbolism in the doll was so obvious, so striking, I couldn’t clear it from my mind. I wanted to ask Sue about the doll, for she had obviously picked it up from where it landed on the floor and placed it on the sill.

Before I could ask her, however, Sue left for her semi-annual check up with her oncologist. Everything looked great until he got to her ankle, the site of her original cancerous mole. There he spotted a lump he didn’t like. Two hours later, her dermatologist took a knife to the lump and a black tumor the size of a pea popped out. “Melanoma for sure” said the dermatologist. The dreaded disease was back.

How did the doll know?

How do we know these things?

What is premonition? Fear taking form? Spirits? Jung’s collective unconscious? They are not always right. But sometimes they are. That’s what gives them their power.

How do we, the unspoken victim, the cancer patient’s spouse, live with these things. How do we live with the knowing … and the unknowing …  of what is in store for us. It is nowhere near as dreadful as what our loved one’s face, but it is hard. We know we will have to forge on without them. Alone. No partner, no companion, no support. That’s scary. And we have to learn to do the things they have always done. That’s hard too.

But I take comfort from Sue, who is not giving into fear, nor is she wallowing in self pity. She is going to her core self and asking what can I do, must I do, with the time I have left. Can we do any less?

22 Aug 2009

The call from Sue was urgent — she was in a line, boarding a plane: “The tests came back – I’m clean!!  No cancer!  It didn’t get out this time.”

Yea!!!!

A reprieve.

We get more time.

It’s a huge relief.

Three years ago the cancer cells made it to the neighboring lymph nodes, necessitating a saturation bombing campaign that would have made Curtis LeMay proud (a series of four five day, twenty-four hour a day, chemo drip blasts). Thank goodness she doesn’t have to start that regime right away.

The reprieve is not forever.  All things evolve. Relentlessly. But this is, by far, the best of all possible alternatives. The fear, of course, remains. We know the cancer can come back at any time. We live with that. But today is not the day.

The vows remain: make the most of every day. Share more of the joys, and the chores, of living together. Keep filling the notebook with pages on how to do the things she has always done.

As Sue said: “If I can be darkness, I can be light.” Let’s all bring the light into our lives.

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Up Periscope

Journal, day 8…

When you’ve had cancer and it resurfaces, it’s a bit like being under water…

Fears eddy up and subside, waves of anticipation wash over you and bubbles of information float by with sometimes heartening news, and sometimes not.

When you are standing face to face with your path… with your destiny I guess, you are looking into this void of unknowing and trying to figure out how to be… but where do you go for the informed outlook? How do you ease yourself into the place where you can be comfortable with the upcoming turn in the road and yet prepared for the unforeseen…

Concrete facts, when possible, are the key to sanity… knowing what you are dealing with is the first step toward the great unknown. We are so blessed to have the procedures we have available today, albeit they cost an arm and a leg… The PET scan and the MRI were both clean… there does not appear to be any “activity” of cancer growth anywhere in my body, including the place where my melanoma resurfaced… or more accurately, recurred. This is so very good.

Lisa Jones’ new book, Broken (Simon and Schuster) happened to be what I was reading when all of this came down. This passage resonates for me… “But experiences fade. Sameness will have it’s day, every day. We wake every morning pretty much the same as we were the day before, because that’s how we like it, and because anything else would be scary.” Maybe that is what cancer does to you… it pours you into experience and re-defines sameness. It is more than scary, it is a wake-up call on steroids.

Short term, you excavate deeply and widely and hopefully remove all possibilities for future recurrences. Long term? Maybe the solution for me could be similar to gardening… when I pay attention, I sense distress, thirst, hunger … my plants tell me what they need… I am attracted to the ones which need my intervention… so maybe I should garden my body? Maybe one can harvest one’s health… Whatever your formula, information ~ understanding ~ sympathy… Your body is your garden… Read up, listen, hear, cultivate.

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Journal, day 1… 08/08/09

We all know it damn it, we do… we know that remission is what it is…abatement or diminution, as of disease… It’s not being cured; it’s using your get-out-of-jail-free card to continue your journey on around the board… Life goes back to Normal and even though you bring a new sense of gratitude and appreciation with you, even though you think and do things in a new space filled with joy and purpose, you are still back to normal… tomorrow becomes a given…

Then the bump appears… In the case of my melanoma, right where the first one was… you try to sooth your self on the way to the dermatologist, all the benign things it could be… but there’s that nagging knowing in the background… this is the beginning of the next phase.

It’s out… melanoma again… but it’s good to be rid of it. It’s satisfying to see it floating helplessly in the solution of its tightly capped specimen jar. My dermatologist is forthright about her interpretation and what the future holds for me… but she is young, and she has never had cancer… you have to put her thoughts in perspective… you have to gain perspective in general… So I start at the bitter end of the worst-case scenario and rush to embrace the most challenging and toughest road which has been suggested… Brutal chemo, cancer popping up everywhere, bed-ridden… death. It was enough to make me want to just lay down in the road right there and call for some truck to run over me… a big semi preferably… it was the same path I walked with Dick just after my first diagnosis, only instead of building and unfolding over the course of weeks, this all happened within hours. Time is of the essence I guess…

We talked on the patio. I produced a noteworthy pile of tear soddened Kleenex and intermittently picked the dying leaves off the patio geranium… they ended up all smooched together, backed up against the freshening wind. They looked like a soggy bouquet… I was loosing my self, becoming numb and distant… I had no future, no enthusiasm, and no reason. I felt adrift without paddle or sail… I could see Dick sitting there sharing my pain and confusion, but I felt like if I had reached out physically, his form would have receded proportionately… Just hold on one damn minute… There is nothing “out there” doing anything except what it should be doing… Blowing, shining, whirring, chirping, rustling, bumping and bumbling… everything that was happening in me was totally of my own making… OF MY OWN MAKING… well… then if I can be darkness, can’t I be light? If I can be despondency, can’t I be joy?

My core… my center place where the essence of who I am sits quietly and smiles at my wild side. Sits quiet and welcoming when I have run myself ragged and need to come home… the place from which I will endeavor to set out from each morning for the rest of the time I have on this planet.

As within, so without.

janiemaybw

Survivor since 2007…

My mother, Nelda McGowan Wilkey, was diagnosed with cancer in 1989.  She had lumpectomies done but chose not to have the double mastectomy. From the time she was diagnosed I began having my annual mammograms. There is a long family history of several types of cancer from both my parents’ families.  For years [the mamograms] came back just fine. Then in September of 2007 I went for my annual check up with my OB/GYN.  The day I had the mammogram done the tech called and told me they had seen something on the films. About the same time the Pavilion was setting up their new equipment and they scheduled me to come back for an additional scan. The radiologist came in and did it himself. There was enough concern at that point that they scheduled me for a biopsy.  A few days later my doctor called with the bad news. It was cancer, but the non invasive type. They referred me to Dr. Andrew Morse, surgeon.  He did the first lumpectomy on November 16th and told me he was sure he had gotten everything. A couple of days later he called me himself with more bad news. Apparently the path report came back and showed a second type of cancer in the same breast. This time it was the invasive type. So he scheduled me for the second lumpectomy on November 27th. That surgery took a major toll on my left breast. When the bandages came off the left breast was completely concave to where you couldn’t see the nipple. I was very upset about this but continued to pray and ask GOD for his strength and guidance through this ordeal.
In January I was to begin 4 sets of chemo. I did just fine with the first one. When I went for the 2nd one it didn’t go well at all. As soon as the chemo hit my veins I collapsed and flat lined on the spot. All I remember is the room going dark and the most brilliant sparkles I have ever seen. I also remember my body going in to convulsions.  I recall seeing nurses, doctors, pharmacist, etc… rushing towards me before I blacked out. The next thing I remember is my nurse, Karen, standing there with tears in her eyes and trying to talk to me and keep me awake.  I was very weak. Dr. Virgillio ordered me to come back for the next 5 days for IV fluids to replace and rebuild all that I had lost that day.

About 2 weeks later I agreed to attempt a 3rd chemo with the assurance from Dr. Virgillio it would not happen twice. I woke up that morning with a horrible feeling and knew something would happen. When I got there I mentioned to the nurse what I was feeling. She reassured me everything would be just fine. This time they did my premeds through IV before starting the chemo.  I ordered my lunch tray and had just begun to eating when that horrible feeling I had on the 2nd chemo came back immediately.  I had enough time to set my tray on the table beside me and tell the nurse something bad was happening to me. Then I went into convulsions again. She ran and got the Doctor and other medical staff. I went into anaphylactic shock instantly and my throat collapsed and I could not breath and then I passed out. Needless to say I did not do the 3rd chemo. Once I was stabilized they sent me home.  About a month later I started a series of 33 radiation treatments. I am proud to say I did not have one problem with those.  I have been going to my check ups with all the physicians involved in my case and they are all very pleased with my progress. I plan to have reconstructive surgery in the near future. Once that is done I will get back to the business of living a full , healthy and happy life with my husband, Arthur May. He has been a true blessing throughout this entire ordeal. I don’t know how I would have survived without him.

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Supporting survivors since 2007…

Diane was born and raised in Des Moines, Iowa… the second in a family of eight children… She has been a care giver all of her life. When her Mom went off to work, she undertook the care of her younger 6 siblings, and she has been sharing her gift of compassion ever since. She branched outside her siblings to elder-care, where she filled lonely hours with her special brand of enthusiasm and devotion, and it was here that she began to understand the importance of activity and sharing in the maintenance of a healthy life. While living in Aspen, she first understood her calling to work with cancer survivors when a good friend who was dying of cancer was moved to St. Mary’s in Grand Junction, where she remained until her death. It was a sad and troubling realization that people with cancer also suffer a loss of community and support, but it was also an awakening to her calling in life.
Your Friends for Life is an organization of cancer survivors, families, adults, children and caring neighbors who commit what time and energy they can to sharing their personal knowledge with people who are in the first throes of the cancer experience. Being diagnosed and then coming to terms with the medical reality of chemo and surgery is a totally overwhelming event, like being captured by a huge wave and tumbled about by the aftermath of the surf. You don’t know which way is up, you loose your footing and you fight to hold your breath… difference here is that when you reach out, there is a hand to grab onto you and set you right. That is the mission of Diane’s growing team of Your Friends for Life. They are there to help with the myriad of unique stumbling blocks which isolate and exhaust both cancer patients and their families. Maybe it is the terror of looking down in the shower to see all your hair floating at your feet, or settling for peanut butter sandwiches because you are too exhausted to go to town, or feeling trapped by the inability to break outside the medical cycle of survival and the cancer microscope, or being the spouse or child who feels lost and alone… whatever the need, there is Your Friends at hand. Your Friends for Life is a community of cancer knowledge and support… a group of people with first-hand experience who would not hesitate to get up in the middle of the night to come to the aide of a cancer trauma… an individual, one on one solution which fosters friendships and fulfillment for everyone involved… the patient, the family, the husband or wife and the children who are caught up in the drama without really understanding why their worlds are up-side down. Being a member of Your Friends for Life is paying it forward in an area where there is generally darkness and confusion… shedding some light and normalcy… reaffirming the best of the human experience, which is caring and giving.
If you are interested in joining this effort in caring, nurturing and enrichment, please call Diane at  970-309-5293 or visit their website at Your Friends for Life; to see what gifts you can bring to the cancer survivor community.

carriehostbw

Survivor since 2003…

I’ve always loved a single daisy, or even a whole bunch. As a girl, I loved that my sister and I could make chains of them into necklaces, or that we could decide if a boy loved us or not by plucking its smooth petals. A daisy is a highly under-rated flower. With its clean white petals and lemon-yellow center, it has often invited me to smile when I didn’t feel like it. Daisies are like Valentines from children, simple.

When I was eight years old, I wrote a letter to President Nixon. It was more of a request, actually. I sent him a small Valentine asking him a big favor: to end the war in Vietnam. As one of six kids, getting anyone to listen was a task in itself. It usually amounted to being the loudest or the funniest. But when I heard that my oldest brother was going to be sent away to war, I was speechless. I decided to take matters into my own hands. Being loud or funny wasn’t going to work here. The only way to get the President to listen was to write him a letter.

He wrote me back. And as I sat on the front steps of my house in Denver, Colorado, holding his reply in an envelope addressed to me, from the White House, all the way from a place called Washington, DC, I knew that I wanted to be a writer. Writing got to people.

After that, I began writing stories, poems, letters and limericks, but my dream of being a writer slowly faded with the pages I began collecting in an old leather suitcase, for “someday.”

Over time I became a tea-drinking, fly-fishing, antique-perusing traveler, as well as a self proclaimed foodie and lover of books, classic films, theater and art. I also became a mother. I loved being a mother and without any fanfare, that became my full time job. Did I mention sailing? That is, whenever I can make it to an ocean, being a mountain girl. I married a captain, Amory Host, and became his first mate.

Three children and roughly 5,800 loads of laundry later, I still hadn’t found the courage to stake my claim as a writer. Oddly enough, it only took three words to change all that. “You have cancer.”

In 2003, five years ago on Halloween, it was discovered; a rare form of cancer called Carcinoid Tumor. With my new ten-month-old baby William, my eleven-year-old son Marco and thirteen-year-old daughter Chanel at home in the nest, I was gingerly told that I could expect to live 18 to 36 months. I became acutely aware of everything that I had and had not done in my life.

Out on the battlefield alone with cancer charging me carrying a pitchfork was the defining moment that helped me to quickly re-prioritize my top three fears. Of course the fear of dying took the top spot, followed by every writer’s fear of rejection, and lastly my fear of running out of pure, sweet-cream butter.

While cancer was busy taking everything from me, including my life, I decided that at the very least I should take back my pen. I quit mingling with “later” and sat down with “right now.”

I wrote a memoir titled “Between Me and the River.” It is a candid love story and an emotional nightlight for anyone living with a terminal illness. It will be released in August 2009. While being a memoir indicates that it is a snapshot of a period of my life, it’s really less about me and more about us. By “us” I mean the collective group of individuals that belong to a club none of us wanted to join: “The Cancer Club.”

I want to inspire people through my book and by giving sincere talks that explore the questions, “How do we do this?” “How do we live our lives without becoming crippled with fear when we are living with a terminal disease?” or “How can we squeeze some happiness from the lemons life may have given us?”

I guess I find it ironic that because cancer rendered me speechless, I’ve found my voice. It’s quieter and stronger than the loud one lost growing up in a large, loving, noisy family. I first recognized it in my Valentine to the President and now, a lifetime later, in the pages of my book.

Isn’t it delightful that a feeling that I left behind on the front porch in childhood could rescue me so many years later in the backyard of my life? Every time I squeeze a lemon or see a daisy, I smile quietly to myself.

A note from PAFOC:  Carrie’s upcoming book can be reviewed on her web site: CarrieHost.com It is also possible to download an excerpt from her story by either going to her site, or contacting me here. I promise it will fill you, and make you want more… but we have to wait until August for that… It IS possible to pre-order a copy however. Click on the thumbnail below to preview her cover…

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“A beautiful, tender story about a woman who is supported by friendships, love of family and dedication of doctors.
This powerful, thought provoking book never leaves you”
Clive Cussler

judyschrammbw

Survivor since 1983…

I discovered that I had breast cancer 26 years ago and I thought that I was going to die.  I was young, newly married and only knew one person who had cancer and she died shortly after I was diagnosed.

My husband was a surgeon and felt that the best place for me to have my surgery was M.D. Anderson in Houston, Texas.  It was a huge place and I spent two days wandering from department to department, having tests, interviews, photographs, and medical examinations.  All I could think of was that I was dying and would leave my children and new husband.

At that time I didn’t know of any support groups.  My family and friends were very loving and caring but they couldn’t imagine what I was going through.  I was afraid, hopeless and lonely.

A few days after my mastectomy, two little old ladies came into my hospital room, bringing me a bag of helpful items.  They told me that they both were survivors for over 25 years and they gave me my first glimmer of hope that I might also survive.

I vowed that if I won my battle with cancer, I would try to help others with a cancer diagnosis.  Volunteering at Aspen Valley Hospital and working with cancer patients has been fulfilling and rewarding for me.  I love to talk with patients, discussing their illness, hopes and fears and sharing my experiences.  Today cancer patients have many opportunities to find helpful information, guidance and support.

Also, the oncology nurses at Aspen Valley Hospital are well trained, dedicated, patient-oriented and compassionate.

If you would like to also participate in the volunteer program at Aspen Valley Hospital, contact Ginny Dyche at 970-544-1296… at Valley View Hospital, please contact Dr. Becca Schickling, volunteer coordinator, 970-384-6656.  In your area, contact the Human Resources office at your local hospital. You could make all the difference for someone in the depths of their cancer experience.

jodyensignbw

Survivor since 1974…

1974, the dark ages… We called cancer the “C” word because treatment was no guarantee for a remission, and the chemicals used to battle the disease were  harsh and toxic. Having this disease was a very scary and torturous ride through relatively uncharted waters. We were afraid to say the actual word. Then, as now, the primary defense was early detection. Living in Connecticut at the time, I fortunately had a very vigilant and caring doctor, which now, looking back, probably saved my life.  I had no symptoms… no excessive bleeding, pain or discharge. I was also young… in my late twenties, with a perfect health record. What I did have was a pelvic exam every year from my general practitioner. He became concerned as he was examining me that year, and quietly told me he had found some spots… three spots, on my cervix… SEMI-PANIC… He referred me to an OB-GYN for a biopsy… Maybe they were just benign squamous cells? My biopsy was excruciating. It felt like the doctor was using a paper punch… it was also positive… now MAJOR PANIC… At the time I was feeling very alone and didn’t know who to turn to. I had never known anyone who had cancer, but as is so often the case, loving friends and a very sensitive, caring doctor were at my side. My doctor sat with me for so long, giving me the time to absorb the situation and ask my naive questions… Because the cancer was still in the very early stages, and because it is a rather slow developing cancer, we opted for Cryosurgery… a freezing procedure done over a number of return visits… 4 to be exact… As I lay on the operating table awaiting the first treatment, I found myself having trouble breathing… I realized I was in a state of profound fear and in trepidation… My life was no longer within my bounds… I had lost control… My physician came to my rescue once again… he asked me if I cared to watch… Oh yes! He gave me a local anesthetic and explained every move, while his nurse held a mirror so I could see my cervix and the spots. I wasn’t quite sure what I was looking at, but I knew it was my body and that the tide had turned… we were now the aggressors, and cancer was the target. The procedure was painless, the side effects nothing more than a nuisance… as the frozen tissue thawed, there was a small gush of moisture… best experienced at home rather than a public forum, as I rather humorously found out one day while shopping after the second proceedure… At my subsequent 3 treatments, I no longer needed that mirror… I knew what was needed and that it was being done. That was 35 years ago… I remain a healthy and active woman. A few years after my treatments, the Endometriosis which had plagued me for several years became so severe that I was forced to have a partial hysterectomy… Is there a link between Endometriosis and Cervical cancer??? Another issue which I have had conflicting answers to is this… do I get a Pap test now that I have had a hysterectomy???
There are many generalizations about the HPV link to Cervical cancers, but they are just that… there are also many factors aside from the typical HPV infections (which account for the majority of Cervical cancer diagnosis) which can happen to you… the answer is simple… a yearly pelvic exam… we women are complicated, and so are our reproductive organs! It is such a simple solution. The following is an excerpt from the National Cervical Cancer/HPV Coalition website… If you are interested in finding out more, or touching base with the community which is dedicated to the understanding of, treatment for and support during and after Cervical cancer, please visit them at http://www.nccc-online.org/

Cervical cancer affects approximately 10,000 women in the United States each year. Cervical cancer is the second most common type of cancer for women worldwide, but because it develops over time, it is also one of the most preventable types of cancer. Deaths from cervical cancer in the United States continue to decline by approximately 2 percent a year. This decline is primarily due to the widespread use of the Pap test to detect cervical abnormalities and allow for early treatment. Most women who have abnormal cervical cell changes that progress to cervical cancer have never had a Pap test or have not had one in the previous three to five years.
Cancer of the cervix tends to occur during midlife. Half of the women diagnosed with the disease are between 35 and 55 years of age. It rarely affects women under age 20, and approximately 20 percent of diagnoses are made in women older than 65. For this reason, it is important for women to continue cervical cancer screening until at least the age of 70.

Types of Cervical Cancer
The cervix is the narrow opening into the uterus from the vagina. The normal “ectocervix” (the portion of the uterus extending into the vagina) is a healthy pink color and is covered with flat, thin cells called squamous cells. The “endocervix” or cervical canal is made up of another kind of cell called columnar cells. The area where these cells meet is called the “transformation zone” (T-zone) and is the most likely location for abnormal or precancerous cells to develop.
Most cervical cancers (80 to 90 percent) are squamous cell cancers. Adenocarcinoma is the second most common type of cervical cancer, accounting for the remaining 10 to 20 percent of cases. Adenocarcinoma develops from the glands that produce mucus in the endocervix. While less common than squamous cell carcinoma, the incidence of adenocarcinoma is on the rise, particularly in younger women.

Causes of Cervical Cancer
Human Papillomavirus (HPV) is found in about 99% of cervical cancers. There are over 100 different types of HPV, the majority of which are considered Low Risk and do not cause cervical cancer. High Risk HPV types may cause cervical cell abnormalities or cancer. More than 70 percent of cervical cancer cases can be attributed to two types of the virus, HPV-16 and HPV-18, often referred to as High Risk HPV Types.
HPV is estimated to be the most common sexually transmitted infection in the United States. In fact, by age 50 approximately 80% of women have been infected with some type of HPV. The majority of women infected with the HPV virus do NOT develop cervical cancer. For most women the HPV infection is transient and 90% of infections resolve spontaneously within 2 years. A small proportion of women do not clear the HPV virus and are considered to have persistent infection. A woman with a persistent HPV infection is at greater risk of developing cervical cell abnormalities and cancer than a woman whose infection resolves on its own.

Signs and Symptoms of Cervical Cancer
Precancerous cervical cell changes and early cancers of the cervix generally do not cause symptoms. Abnormal or irregular vaginal bleeding, pain during sex, or vaginal discharge may be symptoms of more advanced disease.

* Notify your healthcare provider if you experience: Abnormal bleeding, such as,
* Bleeding between regular menstrual periods
* Bleeding after sexual intercourse
* Bleeding after douching
* Bleeding after a pelvic exam
* Pelvic pain not related to your menstrual cycle
* Heavy or unusual discharge that may be watery, thick, and possibly have a foul odor
* Increased urinary frequency
* Pain during urination

Detecting Cervical Cancer
The best way to determine if precancerous or cancerous cells are present is with a Pap test. The Pap test can determine if cell changes have taken place that may indicate precancerous or cancerous development. (See Pap Testing for more information). In addition to a Pap test, your doctor may recommend an HPV test. The HPV test does not indicate the presence of precancerous or cancerous cells. It determines whether or not a woman has an HPV infection with any of the 13 high-risk HPV types. The test cannot tell you whether your infection is new or if it is persistent. This information will assist you and your doctor to determine appropriate follow-up and intervals for cervical cancer screening. (See HPV Testing for more information).

Protecting Yourself from Cervical Cancer
Cervical cancer is one of the most preventable cancers today. If caught early, the 5-year survival rate is almost 100%. Regular Pap testing is the best method to protect against invasive cervical cancer. It is most important to remember that cervical cancer takes many years to develop. Regular Pap tests will help detect any precancerous or abnormal cells early enough so that cervical cancer can be prevented.
In addition to routine Pap testing, you may want to consider minimizing risk factors that could contribute to cervical cancer. Those factors include:

* Multiple sexual partners
* Multiple full-term pregnancies
* Sexual intercourse at an early age
* Chlamydia infection
* Cigarette smoking
* Use of oral contraceptives
* Weakened immune system or HIV infection

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CAROL WELLS-FEDERMAN
Uterine Cancer

Survivor since 2001…

… Bleeding… hmmm. This shouldn’t be, I was 6 years postmenopausal.  Something didn’t feel right … bloated, back pain that woke me up at night.
… Four vaginal exams, one ultrasound, and one biopsy later … it was uterine cancer.  A total hysterectomy was scheduled.

Disbelief. How could this happen? I had no risk factors and no cancer in my family.  I ate a relatively healthy diet and exercised regularly, I had a happy marriage, a great family, wonderful friends, and a good job. And yet, I had CANCER.

With disbelief and panic I began the roller coaster ride of arranging for tests and scheduling doctor’s appointments. Holding on to hope I got through the phone calls to friends and family. I was acutely aware of all of my senses while I listened to the silent disbelief on the other end of the phone, the unspoken “If this could happen to you…”    Aware of all the worried expressions… my husband, my mother, my brother, my sister-in-law, and my niece. My stepchildren were scared. My friends were scared. I was scared.

Then I experienced the magic of hope that was given to me, “the patient”, by the surgeon and his oncology team. “Patient”? Oh, that’s me … I am the “patient” now!  For over 30 years I had been the caregiver, the nurse, and now it was my turn to experience the other side of the bed. . I must allow myself to be “cared for”. But I was lucky, I felt healthy and I could get busy. I got on the web, called all the professionals and friends I knew and gathered the best care giving “team” I could find. That’s how I dealt with the panic and uncertainty. Control what I could and hope I could give up control when I needed to. And I did.

What I learned … Listen to your body, say yes when your friends and family offer to help, and never underestimate the healing power of hope. It has been eight years now and I’m healthy and so glad to be one of the Survivors.

HARVEY FEDERMAN
Small Cell Lymphoma

Survivor since 2000…

I am a healthy guy…I exercise regularly and eat fairly healthy as well… always did. I am not overweight. Then about 31⁄2 years ago I noticed a couple of small swollen lymph glands that didn’t go away after a three week cold. In March of 2005 after a biopsy of a swollen node & bone marrow test I was diagnosed with small cell lymphoma. I believe I’ve had it for about eight or nine years.

Here I was, a guy that had never really had any illnesses except for childhood growing up stuff, and now I’m diagnosed with cancer. My father also had it. My brother had leukemia. He passed away at 56.  So far I have not had any problems, however I am concerned that one day it may become a problem and I may need treatment.

My thoughts now are about time…how much healthy and quality time will I have with the people I love… with friends…how fast time passes…. the many things I have taken for granted…its been a wake up call for me.

lynnjohnredmondbw

Survivor since 2004

When I received my breast cancer diagnosis at age 48, I was devastated. Like others, hearing that news feels like a death sentence. I lost my own mother when she was 54 and I have always thought that maybe I would follow her fate. She missed so much of my life, and I just hope that I will be here with my husband and children for many years.

The best advice I can give anyone who faces such a challenging diagnosis is to get a SECOND OPINION. I initially went to Denver to have more biopsies and other equally frightening tests, and to meet a surgeon. I just didn’t feel comfortable with her and her plan. I felt pressured to make a quick decision, but I thought I didn’t have choices.

I went to visit my sister in California a few weeks before my planned surgery. She and a few of her friends, and her pediatrician begged me to get another opinion. I met with the medical oncologist and it changed everything. He offered me a totally different procedure, one that wasn’t even mentioned in Denver. He helped me to feel so positive regarding my situation. I had a female surgeon who I am still close to. After surgery, I searched with their help to find a radiation oncologist. I interviewed three radiologists and found a fabulous man. So began my long spring and summer in California. It was difficult for me to be away from my husband and boys but I know that I received excellent care.

For me the psychological aspects of facing my own possible mortality and all the ramifications for me and my family have been the most difficult. I still have a lot of anxiety in dealing with all this. I now appreciate the small moments that we have each day: maybe a conversation with my sons, the amazing clouds, a hug from a friend.

I think we all need strong emotional support during this unplanned detour in life. I know for me I had a strong connection to my medical team, a supportive family and friends, an amazing psychotherapist and the Cancer Center with their encouragement, all enabling me to be stronger than I might be now two years from diagnosis.

Today, I am trying just to focus on the here and now and to not worry about the future. It is enough to be well and fulfilled.

allisonburkebw

Survivor since 1981…
I was young and strong. At age 22, my life was spreading out before me. Synovial Sarcoma, which usually strikes teenage boys, is rare, and almost always results in the amputation of a leg, sometimes an arm . It was even less likely that a young woman would be afflicted. My tumor, the size of a man’s fist, was in my shoulder which, thankfully, couldn’t be amputated. Oncologists met in teams, and decided to hit me with everything they had, as the tumor was known to be aggressive, and metastasize to bone or lung. While I was never sick from the cancer, I now spent a day and a half of every month retching up the lining of my stomach. My skin was burned from radiation. I had no hair. Anywhere.

I have survived a quarter of a century now, blessed with two beautiful daughters, Madison and Shelby, that I was warned might not exist. My husband John appreciates the gift we have been given, as he was there from the beginning, rinsing out the bucket, and sitting quietly near me. At the age of 12 John lost his own father to cancer. Having them in my life is a gift.

Prior to my diagnosis, I was in a relationship that was wrong for me. I didn’t have the wisdom, or the courage to trust myself, and I allowed too much negative energy to control my life.  I was made to choose between the relationship, and my family. I chose the relationship, and severed ties with people that I loved.  I believe now that the guilt of hurting these people that cared about me deeply made me sick, that the ugliness and pain that I had shoved down inside of me literally made me ill. When I was diagnosed, I was instantly reunited with those that I had hurt, and forgiven. I was placed in a womb of love and healing. Positive, caring people surrounded and supported me, showering me with unconditional love.  It is undeniable that not only our minds but also our hearts are connected to our bodies. Shutting people out made me sick. Letting them in made me well.

My personal goals have been shaped by the lessons that cancer has taught me.  It is a lifelong process to pursue these goals.  So many years later, I sometimes have to remind myself that just waking up every day is a gift. Letting the people that I love, and the people that love me, be my compass comes more naturally. I try to remember that even the smallest of kindnesses can have an effect on someone’s day, or even their life. Not only am I inspired to surround myself with authentic and true people, I work towards being one of them everyday.  It is a challenge to keep these goals in sight.

Thankfully, I wake up everyday to these challenges.

rongolbusbw

Survivor since 2005…

I live in basalt with my three children, Ryan, Chandler, and Garrett and my wife Carolyn. When I was informed that I had early on prostate cancer I thought that I was going to die. When I became more informed about my condition and explored the options available to me to correct this situation, I approached the upcoming operation with confidence and relief. 25% of all men regardless of their age will be informed that they have prostate cancer. The good news is that early detection and early removal of the problem can actually eliminate the problem and you are then good to go. The treatment was virtually pain free and the recovery period was 6 weeks. You never think that you will get the call. But if you stay in front of your medical exams and get your PSA checked every 6 months, you will get the early detection benefit of being proactive. So get to your doctor, regardless of your age and stay in front of the curve.

What I have learned from the experience is to appreciate how great I have it, to verbally acknowledge how great I have it, and to act more appreciative by doing “the right thing” in all instances… Be nicer, be kinder, be happier…

Be more all the time.

JenniferCooper2BW.Crop.jpg

Survivor since 2008

I have always been very active.  I eat healthy foods, avoiding store-prepared products and choosing instead to can and freeze my own produce in the summertime.  I gave birth to my three children using absolutely no drugs, because I thought it would be healthier for me and the baby.  I was a little overweight after having my uterus removed.  I carry my weight very well; I lost 30 pounds but only one pant size.  I walk, I hike, I bike.  I do not drink soda, but instead consume lots of water with some tea, coffee, and red wine for variety.  To my three sisters and to my parents, I am the picture of health.

When I got a pain in my right abdomen, I was sure it was appendicitis.  It lingered.  It worsened.  So I agreed to go to the doctor.  Turns out, it is a blessing my appendix was still with me, because it saved my life.  I still have it.  What I do not have are my ovaries or my fallopian tubes or several lymph nodes and part of my greater omentum.  I was diagnosed with a Granulosa cell tumour, which translates to a rare form of ovarian cancer that is highly curable when found early.  Mine was particularly aggressive, so I had to undergo a wicked nine-week stretch of chemo.  Each of my sisters is missing her appendix, so I am vigilant about hounding them to go get their female organs checked.  Regularly.

Many blessings have befallen me during this trying time, not the least of which was having a set time frame for my chemo.  A close-ended time was much easier for me to accept.   Another was getting to know those kind and generous souls who are oncology nurses.  A tremendous blessing for me was that, after being told I had cancer, I did not wish I had done something different with my life.  There was no epiphany about wishing I had climbed more mountains or loved my family better, because I was actively doing what I loved and loving who I live with and living each day to the fullest. I was upset because it interfered with my living a life I thoroughly enjoy.  But now I am back.  I have to go for checkups and I really, really, really, really don’t like my hair this length.  But it is growing and I am healing and life is, still, continuously, joyfully returning to my damaged body.  I am grateful that this was a physical attack and not an attack of a spiritual nature.

I am, truly, blessed.

Survivor since 2000

I was in denial right up to the point that the surgeon told my husband and me that the biopsy showed that I had Breast cancer.  I had a mastectomy,  and 10 days later the other breast was removed. My surgeon, being the knowledgeable physician that he was, knew that the type of breast cancer I had could mirror into the other breast so he performed a second biopsy and found cancer there as well.

The process of going through chemotherapy, radiation and reconstructive surgery has been a long road.  The people that were most helpful to me were the ones that could acknowledge my feelings and support me in this very difficult journey.  It wasn’t helpful to have people minimize those feelings by saying “you’re a survivor, you should be happy that you’re alive”.  I never believed that I was going die but I did know I needed support in my healing process.

In 2005 I had the opportunity to attend the “Casting for Recovery” retreat at Powderhorn Guest Ranch near Gunnison.  After 2 1⁄2 years from diagnosis I finally found the true support that I needed to move further along in my recovery.  I learned how to fly fish, was able to open up with other Breast Cancer Survivors about the pain of going through the process of cancer and to be genuinely treated with dignity and respect by the entire staff.

I will never forget this experience and see it as a turning point in my recovery.  I am now a volunteer for the Program and am working with a marvelous group of women here in the Roaring Fork Valley to raise money to support the current three retreats offered in Colorado and working towards raising the funds to add an additional retreat in 2008 so that more survivors can experience this wonderful experience in their healing process.

lyndayazzolinobw

Survivor since 2007…

March ’07 – Original diagnosis – I had pain in my armpit, agitated to get in for a mammogram quickly.  Fortunately my doctor wrote an order for both a mammogram and an ultrasound as the radiologist did not think they would have seen the tumor with just the mammogram (dense breast material.)  The ultrasound was on a Friday, I came back a few hours later for a biopsy, and the following Monday I got a call from my OBGYN telling me I had breast cancer.  Tuesday I met with the surgeon and then went in for a breast MRI.  The MRI showed more significant tumor size and changed the surgery plan.  I had a mastectomy on Friday.  The surgery was not so bad physically  – mentally accepting that a part of my body had been  amputated was a slow process.  Most upsetting was the fact that I had a large tumor and cancer in all twenty one lymph nodes and was staged at 3C.

From the moment of my diagnosis, friends and family were cheering me on, showering us with food, flowers and prayers.  I have children and a husband who need me so there was no choice in my mind that I had to accept whatever my oncologist recommended when it came to treatment.  So, surgery to put in a port (I have “difficult” veins – the port allowed easy access and then two rounds of chemo (AC & Taxol).  My husband is a teacher at the middle school and the gifts of food he brought home sustained us  – since the nausea made eating difficult I definitely wasn’t cooking.  My husband is the biggest hero – he kept everything going for our kids, made me feel beautiful despite being one breasted and bald, cleared everybody out of the house when I just needed to sleep and loved me when I was at my lowest.  On the day of chemo, he would dance around the living room with me to Stevie Wonder blasting while I got myself psyched up to face another treatment.  I am a big wimp and the treatments scared me.  Fortunately, the Oncology staff is comprised of angels who were so understanding, and allowed my support team of friends to crowd one corner of the room and distract me during the treatment.  So many people reached out and helped my family and me.  One friend attended nearly every appointment with the oncologist, radiologist, etc.  Sometimes I would be so overwhelmed by the fear and emotions that I would have to ask her later what we had heard.  I don’t know how anyone navigates this journey without advocates who research and ask the hard questions and let you cry with them because you want to be strong later for your kids. I felt like I bounced back pretty quickly after the first couple of treatments.  I attribute that to my acupuncturist.  I took many supplements that helped restore my digestive system after the onslaught of the chemo drugs.  My oncologist just asked to be kept in the loop on what I was taking and was very open to me forming a team that helped me survive chemo.

So chemo was March through June, then radiation July through September.  Unfortunately, one must travel to Idaho Falls (or further) for radiation treatment and you need to go 5 days a week.  I never traveled alone which made the time go faster.  I had continued to work through both the chemo and radiation, so I would work until 2 pm, drive over to IF for the last appointment of the day, spend the night in IF, go for the first treatment of the following morning then back to Jackson for a day of work.  I loved the time spent with friends and family who accompanied me to IF, but I got pretty tired of the radiation….  In the midst of all that I also had a booth with my lampworked glass beads and jewelry at both Art Association Art Fairs and Taking it to the Streets –  what a blessing it was to continue working and making art, allowing me to feel like my “real life” apart from treatment would still be there for me when I was done with the “indignities”.  I finished radiation on 9/11/07 and went in for an ooverectomy (removal of my ovaries and fallopian tubes probably spelled incorrectly) on 9/18.  This was recommended by my oncologist to eliminate hormonal activity.  My OBGYN seemed genuinely shocked when she told me that the pathology showed that my ovaries and fallopian tubes were also cancerous.  So just when I expected to be on the upward, most positive, post treatment trajectory, I found myself recovering from abdominal surgery (we had hoped to do it laproscopically) and I now had Metastasic Breast Cancer Stage 4.  I think this was the lowest point for me emotionally since my initial diagnosis.  My insurance company denied a PET scan which would indicate whether I had cancer in my liver, lungs or bones, but my husband and I felt there was no choice but to do the test so we knew what we were dealing with.  Fortunately, the Pet Scan came back clean and when we exhausted the appeals process several angels appeared and helped us financially to pay for the test.

I am told that as soon as you have received your diagnosis you are considered a survivor, but I didn’t feel that way until I had a couple of blood tests and a breast MRI.  My oncologist indicates that it is very likely that cancer will visit me again, but I am currently Stage 4, NED (No Evidence of Disease).  I feel strong and healthy and grateful.  I want desperately to raise my beautiful boys (age 7 & 15) and watch my wonderful step-daughter make her way in the world, but I know that every day is a gift.  Through the cancer journey my family and I have been showered with love and compassion.  This is an amazing community  – and between the community, loved ones near and far we feel very blessed to have had such an outpouring of support.   Just ask my husband – I still sweat the small stuff – but cancer has changed me, taught me much, and brought our family closer and more aware of what is truly important.

“Love is the world’s most powerful medicine.  It is invisible, abundant, affordable and safe.  An antidote to all forms of violence, disability and disease, the healing power of Love can be harnessed and activated by anyone with the right balance of Patience, Humility and Gratitude.”

While I made beads this weekend, I listened to the show “New Dimensions”.  The speaker was Dr. Noah McKay, those are his words above.  He was fascinating, and I thought a lot about my journey as he talked about the power of the breath of fire, lessons from prison (incarceration can truly give you the gift of time!), and love.

I realized that, for me, the love I was shown throughout my treatment was what truly sustained me, and brought me to where I am today.  I am fully cognizant that I may not be done wrestling with cancer, but today, right now, I feel healthy and vital and busy and capable.  Cancer treatment leaves you weak and vulnerable and small. I am grateful for my treatment, but I didn’t like those side effects.  But for me, all those feelings were minimized by the love that surrounded me every step of the way.  My family, friends, acquaintances, those with whom I had lost touch, people who didn’t really like me – I felt completely supported, and yes, loved throughout those months.  Whether you drove me to Idaho Falls, made my family a meal, sent a card, or just said a little prayer for me – I was held up and sustained by your love.

I know it sounds crazy, but cancer can be a gift.  It focuses us on what is really important – and helps us slow down and express love to our families and friends.  I am writing this today with the wish that cancer only touches your life through me.  That you and yours remain healthy and vibrant, and you express your love for those who are most important to you each and every day.  Terry will tell you that I still sweat the small stuff, but I know our family has become more aware of the transient nature of this life.  I continue to feel blessed each day by the love that manifested in our lives back in 2007.  I am grateful we have returned to regular life.  But I have not forgotten.  I will not forget.  You helped me build the bridge that brought us to this day. Thank you!

Survivor since 2003

I was “lucky.”

The lump appeared in 2004. I was lucky that it was near the surface. I was lucky to catch it pretty early—the tumor was 2.5 cm long, or Stage II, but it hadn’t spread to the lymph nodes. I was lucky to have a supportive family and a lot of information about alternative and adjunctive therapies. I was also lucky to find a wonderful surgeon and a great oncologist, and to live near enough to the Shaw Regional Cancer Center that I could drive there for radiation treatments. So my story, luckily, is not as dramatic as many.

Here’s what l would suggest if you find a lump. Get it removed immediately, and have it biopsied outside your body. What I did, which I don’t recommend, was to have two needle-core biopsies before the lumpectomy. These were very invasive and may have accelerated the tumor’s growth; in addition, they delayed the surgery for a month. That was a month of strong emotions, to say the least.

My cancer was estrogen-receptor positive. That was good news, because now, by taking one small, expensive pill a day for five years, I can be reasonably sure my body won’t pump out estrogen to make a new tumor in the future.

So here’s my next suggestion: if you are post-menopausal, get off of HRT as quickly as you can. Don’t buy the argument that you can ingest bio-identical hormones for years. That’s what I was doing, blissfully ignorant of the consequences. With today’s American diet, most of us have too many hormones coursing through our bodies already. My oncologist believes that the accumulation of hormones is one of the main causes of breast cancer.

And here’s my last suggestion: if you find you have cancer, don’t keep it to yourself! Call people, make contacts, listen to advice, and ask for advice. I emailed a lot of friends and relatives, and their responses—phone calls, emails, visits, letters, prayers— played a huge part in my recovery. Their good will was unforgettably inspiring.

Don’t be afraid to ask for help. People are glad to give it.

With all best wishes for your good health!

Survivor since 2003…

I discovered my lump myself six years ago, underwent lumpectomy surgery, and since I had “stage one” breast cancer, went to [Shaw Medical Center in] Edwards for radiation. The most moving thing to me was all of my girlfriends got together and drove me every day to Edwards for the 6 weeks of radiation. Not once did I drive myself! Also, my college aged daughter, Emily, dropped everything for the summer, and took care of me too. I had another girlfriend who constantly brought over food, because she knew I would be tired.

I am a psychotherapist, and I thought I was empathetic before I got B.C., but, I know I have grown 100% in that area. Any one who has had cancer knows what a difference it makes in your life. You really learn to live in the NOW. I know it has affected my husband, John, too. As they say, “the entire family gets cancer” when one member does. We have a tendency to “go for it” now with choices in life, such as vacations, purchases, etc. (For instance, we just returned from a 2 week trip to Italy to celebrate our 25th wedding anniversary.) It was a trip which would have felt too extravagant pre cancer, but feels just right now!

There are a couple of quotes that seem to fit the way I feel now, and they are, the first by Lance Armstrong, our poster boy for recovery, “Now that I know that I am going to live, what is the highest and best use of myself?” And the other, a friend with a life threatening illness shared with me: “The disease is my friend; it has come to teach me a lesson.” Thanks to cancer, I am a better person today with much more depth than I ever would have had without it!  And, I am really having some FUN too!

Survivor since 1998…

Turning 50 was a wild ride for me. My husband, Steve, and I went to Paris to celebrate. Walked at least 10 miles a day. Heaven, being amidst all that creative juice and respect for art and education. Came back inspired and renewed but very very tired in a way I had never experienced… and during my annual check up discovered I had breast cancer!!! Yikes. So…… 50 was a true landmark for me, and my take on it may be a bit different than most. It was a new lease on life. I changed priorities, quit the relationships that weren’t “tens”, became more dedicated to my art and nature, my home and husband….. got myself a wolf companion and began life anew. Cancer allowed me time to feel into what was calling me and to follow that voice! This was almost eleven years ago, now, and my life is more than I ever expected it would be. Eleven years ago I had to go to Grand Junction every day for 7-8 weeks for treatment and appointments. A different friend took me each day and the one-on-one time we had together was the beginning of a new level of intimacy in my life. So much has happened since and the way I move through life is much more gentle and my gratitude is great. I am so grateful for the depth of this experience even now, when sometimes it feels like it happened to someone else, for I am so different now.

sandramenterbw

Survivor since 2003

2009: Nearly six years after my breast cancer diagnosis, my feelings about my survivorship continue to evolve. My husband and children, I tend to believe through sheer brilliance, treated me from the beginning of this journey as someone who was an “old survivor”.  In other words, they cut me no slack. Through the baldness, the tears, the fears, the countless surgeries and therapies that seemingly took my body from me, the nausea, the weight gain, the mind loss, the continual drives to cancer centers and the non-stop (and abundant) loss of mental health, they expected and counted on me to be Mom and Wife. Their simple and quiet message was, “We expect you to be here.”  It was an important message…and so I am.

Am I back to normal? No. Will I ever be? Yes, but redefined. Have I learned anything? You bet. I am stronger than I knew; I am weaker than I knew; I am angrier than I knew; I am more tolerant than I knew. I am smarter than most of my doctors. That’s right… I am smarter than most of my doctors, and so are you! Pick a day! It will be a winner, regardless…

God be with us.

Survivor since 1993…

Almost 16 years ago, I was diagnosed with breast cancer. I was 40, married with a four year old son and busy pursuing a career as a classical musician. I did not have any breast cancer in my family and although I’d had a benign tumor in my other breast some years before, it was a total surprise and shock to receive the diagnosis. I had just spent a year rehabbing my knee from a skiing accident so this was a double whammy.

Fortunately, my best friend’s husband was a pathologist and was very well-connected with the medical community in Nashville where we lived at the time. Together with my husband and supportive family and friends, they helped me navigate the sometimes stormy waters of treatment – and I was lucky; I found the tumor at a very early stage and was able to have a lumpectomy and radiation. I dodged the chemo bullet that we all fear.

Not so fortunately, I developed lymphedema two years later as a large number of women do.  It is basically a buildup of lymphatic fluid that causes chronic swelling in the arm and sometimes the hand as well. A good basic source of information for lymphedema is the Mayo Clinic website: http://www.mayoclinic.com/health/lymphedema

The type of lymphedema that breast cancer survivors develop is called secondary, because it occurs when there has been trauma to the lymphatic system (ie surgery and the removal of lymph nodes, as was the standard procedure when I had my surgery). I wear a compression sleeve when I exercise or do housework, but for me, the best therapy has been manual lymphatic drainage massage – a specific type of massage that doesn’t go too deeply into the tissue, but gently moves the fluid up out of the arm towards the armpit and collarbone, where it drains out of the lymph nodes under the collarbone. I have been receiving (basically) weekly massages from Lisa Kistner here in Aspen for the last 10 years. She has studied the technique and has a number of regular clients here. Manual lymphatic drainage can also be used on non lymphedema patients for a variety of swelling problems and post-surgical patients. But even the lymphedema has had a silver lining – I’ve developed great friendships with the people that have helped me deal with the hassles of it. This [Roaring Fork] valley is blessed with several massage therapists that really make a difference.

My diagnosis and treatment was the beginning of a multi-year battle for my family. The next year, my dad was diagnosed with bladder cancer and then that same year, one year to the day after I was diagnosed, my sister called to say that she too had developed breast cancer – same side and everything. As difficult as that was, she told me that she knew she would be ok because her big sister had made it through.

Although I wish I had never had cancer, I feel that perhaps being the first in my family to go through it had a purpose after all. Although my dad finally passed away last summer from a different cancer, we were able to talk about it together as only people who’ve shared a common experience can. My sister and I are still healthy and our mutual experience with this disease has deepened and enriched our lives. Every year when I do the Race for the Cure, I do it to celebrate her and she does the same for me.

marybergeronbw

Survivor since 1995…

In July 1995, I had just turned 38 years old, was married with a seven year old son, and had NO family history of breast cancer. My experience as a medical technologist, prior [unrelated but also misdiagnosed] health concerns, and a natural boldness led me to take aggressive action when I felt a lump in my left breast (near the sternum) six weeks prior. Though I was assured by doctors “it was nothing,” I INSISTED on a biopsy on this lump which did NOT show up on mammogram, NOR on ultrasound. I also insisted on receiving only local anesthetic during the needle biopsy, to be sure of guiding the surgeon to the correct spot (which was painful). Even during the procedure he turned to the intern and said, “it’s nothing, just as we suspected.” Oh, how I wish that were true; instead, days later, I received the diagnosis of Stage 2 Breast Cancer.

Never wanting to look back and wonder “what if,” I followed, without hesitation, a pattern of pursuing the most aggressive course of treatment possible. When asked “lumpectomy or mastectomy” my answer was definitive: mastectomy! Chemotherapy or no chemotherapy? Chemotherapy! Tamoxifen or no Tamoxifen (studies of its effectiveness in premenopausal women were not yet completed). Yes, Tamoxifen! Following the initial surgeries and treatment, as well as five years of Tamoxifen, hormonal changes could be seen on mammograms of my remaining breast. That was, to me, a ticking time bomb. So I  found an oncologist who agreed with and supported my decision to have a complete hysterectomy (2002) and second (prophylactic)mastectomy (2005).

Sadly, that “no family history” of breast cancer was wiped away rather rudely. My dear cousin had also been told that she had “nothing to worry about” but then received a diagnosis of breast cancer two months following mine; she died in 2001. I also had “no family history” of ovarian cancer, but less than six months after my hysterectomy, my mother was diagnosed with it, and died just three months later (2003). Since then my older sister has been diagnosed with uterine cancer, and my aunt with breast cancer; thankfully, they are both doing well! Genetic testing does not indicate involvement of the BRCA1/BRCA2 genes, but perhaps some future genetic or environmental studies will provide insight. Meanwhile, I am feeling healthy & strong more than 14 years following my diagnosis, and am enjoying hiking, biking and skiing as much as time allows. I praise God for this, and just pray that I can continue to live a life that glorifies Him.

juliemarkalunasbw

Survivor since 1998…Crystal clear and hard to comprehend. Suddenly, all that mattered following my first diagnosis with Breast Cancer, at 34, was living. Living for my family and my dream of marriage and children. Yet, walking across a field looking at Boulder’s Flatirons, it was hard to believe that there was a chance I might not be able to see these slanted rocks in a few months or years, that I might not realize this dream that I was so close to.Then there are the gifts of cancer:  The chance to live everyday as if it could be your last. You don’t have to try too hard to do that once you are faced with your own mortality. There is the outpouring of love and support. A life threatening illness unleashes everyone’s inhibitions and they don’t hesitate to hold you in their arms, tell you how much they love you, visit you, prepare meals for you, call you. People you don’t even know, other survivors, are on the phone lending their support.  Word spreads fast.  The treatment and the healing begins.There is also the gift of medicine and doctors who care so much that they are willing to take a chance on saving, as well as losing, their patients. There are second and third chances. There are dreams come true and prayers answered.  I did survive my first diagnosis with cancer and two years later I married my husband Marshall. Carter, who is now six, was a honeymoon baby. John, who is now four, was born 2 years later. Both are miracle babies since they followed intensive chemotherapy.Shortly after John was born I was diagnosed a second time with Breast Cancer. I was 40 years old this time. Twice by 40. Just when I was beginning to hope that I didn’t have to worry too much about it. I survived the second time too. Once again, all the gifts were there especially the love of my husband, children, parents, brothers, sister and friends. Intensity and desperation were there as well. Now, I knew what I had to live for and what I could lose.  There was faith and hope and there still is. Hope and faith in family, in God’s love. Faith in community and hope that there will be a cure for all cancers. Hope that I will live long enough to see my children grow up.I still look at our beautiful mountains and the Flatirons and wonder how long I have to look at them. I still hold my husband and children, watch them play and sleep, and wonder how long I have to hold them and to look at them. I hope it’s a long time but if it’s not I am so grateful to have had the time I have had.

annegurchickbw

Survivor since 2004…

My dream was always to move to the mountains and work with animals, so I decided to follow that dream and moved to Aspen.  Within six months of moving here I was diagnosed with breast cancer.  I was in total shock, having recently received a letter stating that the mammogram I had done two weeks prior was clear.  I had never heard of a form of breast cancer that is “mammogram negative,” meaning it does not show up on mammograms.  I discovered that the importance of self-exams cannot be overstated.

One morning, I noticed a lump in my right breast that felt like a cyst and, after a few days of procrastination, went and had it checked out.  It turned out to be a fairly aggressive Stage II breast cancer, and the doctors gave me two weeks to decide between a simple lumpectomy to remove the tumor or a double mastectomy, in case the cancer had spread undetected.  It was a hard couple weeks – not only was I in total shock from the diagnosis and trying to educate myself about the disease, but in the midst of all this, I was having to make this huge decision about whether or not to have both of my breasts removed. I was like the proverbial deer in the headlights.  One evening, a day or two after my diagnosis, after about five minutes of lying on my bed, sobbing, I suddenly sat up.  Seemingly out of nowhere, I was overcome with this amazing strength to fight as aggressively as I could.  I was fighting for my life and nothing was going to stop me.  Not even cancer.

I opted for the double mastectomy. My other breast turned out to be cancer-free, but we discovered the cancer had invaded my lymph nodes and I began four months of chemotherapy, followed by six weeks of radiation treatment.  It was a difficult time physically and emotionally.  I was bald and self-conscious, tired or nauseous or at doctor appointments or hospital visits.  However, I was beyond fortunate to have the love and support of family and friends, and that was my saving grace.  From the minute I was diagnosed, they were there for me, making sure I had everything I needed.  I was amazed and touched to discover the depth of friendship and goodness in these individuals, most of whom I had only known for five months.  But they were my strength – they were what kept me going each day and I will never forget the love they showed.

Fiercely independent in life, I suddenly discovered that I had to reach out and I had to accept the help so willingly being offered to me.  Bland Nesbit, a close friend and fellow cancer survivor, went through everything with me – so much so that I called her my co-patient.  Another friend unknowingly gave me what became my daily mantra, when one day he said “Come on. Don’t cry. It is what it is.”

I have a card that is very special to me and I keep it by my bathroom mirror so I can read it every morning.  It says, simply …“Then, when it seems we will never smile again, life comes back …” and it does.  I am cancer-free.  I am a survivor.

seandianebw

In  loving memory of Sean Patrick, for whom, indeed, there was “no such thing as a bad day”…

Hairy maybe, long maybe… hard for sure… but also days filled with purpose, celebration, accomplishment, orneriness, enlightenment, adventure, honesty, celebrity, friendship and caring, determination, will power, reckless abandon, dedication, inspiration and love. Her legacy is at once intimate and global. She took the events that shaped her and used them to shape the events to which she dedicated the last part of her life. She touched lives and she touched life, in the ways unique to someone who understands the gift, which is life and the power of the now with health, vitality and intention. There are countless numbers of people she has affected, both directly and indirectly… countless stories which reflect the many facets of who she was.

One of my favorite memories: that group of ex-ski bum women who ventured out periodically with a designated ski instructor to legally cut lines, ski the deep, visit, and go where some of us, individually, had probably not gone in some time… I was a latecomer… Sean was a regular… I guess I qualified because I’d been around town long enough and I was friends with Sean… we definitely all had history… and we were all Aspen chicks for sure… Anyway, there was one time when it had truly dumped, and there must have been 15 inches of powder when we convened at the Gondola at 9… being an eastern skier and in mortal fear of any ski slope where you can not see your reflection, my heart filled with horror and trepidation as we set out… and after many hours of crashing and burning I had definitely had enough. Sensing that I was on the verge of collapse and meltdown, Sean announced to the group that she and I had had enough fun for one day, and led me off for a few runs on the piste to bolster my confidence and a few glasses of wine to realign my Gyro… she turned an impending disaster into a favorite memory with one simple declaration of independence and one gesture of friendship. I love her for that, and for the many times thereafter when she guided me and shared her self with me.

Surviving cancer is something that one does every day that you are graced with a return to health. It is a time of appreciation and a window of opportunity; a space in which to wake up and live. There are no guarantees in life, other than the inevitability of change, the progression of time and the peace which will grace each of us when life as we know it transcends our earthly boundaries. For those of us who are left behind, it is a time of reflection and love… so goodbye my friend, with much love, Sue Drinker

Here are some thoughts that I’ve had regarding Sean’s death:  by Diane Heald… I think her powerful spirit was ready for more space and her body couldn’t contain that anymore.  I think now there is freedom, flight, possibilities and peace.  Sean was able to instill in all of us a sense of our own unique strength. Gifted vertical dancer, dear friend.

stevesanfordbw

Survivor since 2006

I began feeling flu like symptoms the last two days of our family vacation to Maui, over the Thanksgiving break in 2006.  We decided to do something different for Thanksgiving, so my wife Donna, our two sons Justin and Cody and I flew out for ten days of fun in the sun.  Just relaxing on the beach, or by the pool, no agendas, no big plans.  Donna likes to refer to it as the calm before the storm, and I believe that’s exactly what God blessed us with.
We arrived home, and as is the case often times, going back to work is difficult after a vacation like this.  It was even harder because I didn’t feel well.  I went to our family doctor, and I got the usual, you know what I’m talking about.  “I think you just have a virus, there’s a lot of stuff going around right now.”  I was told to come back if I didn’t feel better in a day or two.  I went back the next day, and informed them I was not leaving until they figured out what was wrong with me.  I got a call that evening at home from a consulting physician, from our regional cancer center telling me that he was sure that I had Leukemia, more specifically A.L.L.  Acute Lymphosetic Leukemia, and I needed to be in Denver at Presbyterian St. Luke’s hospital the next morning.  That was a shock to say the least.  Donna was on her way home from a business trip, so I called all of our friends from our small group, and one of my best friends in the world, Chalance Coit.  She and her husband Tad are great friends, and she is a 15 year Leukemia survivor so she knew exactly where I was mentally.  I spent a month in Denver at St. Luke’s for my induction treatment, came home and had five more treatments, and found out that I was going to need a bone marrow transplant.  It’s called cytogenetic abnormalities.  They began testing my 5 siblings, and I matched 2 of them exactly!  That’s a God thing for sure!  I went back to Denver in April of 2007, for my transplant at St. Luke’s.  I had chemo, then 4 days of total body irradiation, my sister Ellyn donated cells on the last day of my radiation treatments, and I got my transplant that evening.  I spent a month in the hospital before getting out, and 2 more months in Denver at a hotel where I could get to the clinic for my 3 weekly checkups, or in case of an emergency.  I was given a book, one of many that I read while in Denver, called “It’s not About the Bike,” by Lance Armstrong.  It inspired me to ride every day, and ride hard.  Well, for me it was riding hard.  I would ride every day, (most days it was a major accomplishment just to shower) but I rode anyway.  5 miles, 7 sometimes, but I remember being so mad because one day I had to stop!  I made a vow that I would never stop again, no matter how far I rode.  I rode the Cherry Creek trail every day.  It was a great place to ride, pretty safe from the Denver traffic.
I was blessed to have no complications, and it began to be a game with all of the physicians at check ups, ‘when can I go home.?”  They called me superman, or superpatient, or the boring patient, because everything worked perfectly after my transplant.  I finally convinced them that it was time for me to go home at 85 days.  Home for 4th of July, that was awesome!  I began riding, training harder than in Denver, I felt better being home and it showed in my riding.  I was doing 100 or more miles a week, and I began riding over the Colorado National Monument 2-3 times a week.  It’s been 1 1/2 years since my transplant, and almost 2 years since diagnosis.  I can’t help but quote Solomon, “Rejoice in every day of life.” Eccl.11:8.
I have since retired from my job, and I volunteer a couple of days a week at The Pavilion, St. Mary’s Cancer Center in Grand Junction, and I am currently a theology student with plans of pastoring a church.

Bless you all, I would love to hear from you.         Steve

sallysparhawkbw

Survivor since 2001

It was eight years ago.  It feels very far away now, but it was very intense at the time.  The lessons I’d like to share with you are all about support from friends, family, and people I hardly knew.  It’s about finding resources that were available that I’d never heard about.  And it’s about getting second opinions and finding good doctors that I could trust.
As much as you are comfortable, tell friends and family and even acquaintances what is happening.  My best friend, Marilyn, who lived in Minneapolis, called a mutual friend, Judy in NY.  She called and asked if I had called our friends Herb and Betty.  Dr. Herb Jacobs is a semi-retired gynecologist in Denver.  Herb listened to my story of seeing the local surgeon (who said she wouldn’t know until she was in the surgery if she would need to do a mastectomy).  He said, “That doesn’t sound right to me.  Let me set up for you to see doctors in Denver.” And he did.
I stopped in at Challenge Aspen to give an update to friends there.  A volunteer, Patti, who was a nurse, asked what she could do to help.  I hardly knew her and she wound up taking me to Denver for two days to see the oncologist and surgeon.  Not only did she understand the medical issues and could decipher what the doctors were saying, she was a blast to spend time with.  Kat, another ski instructor, offered to let me stay in their condo when I needed radiology treatments in Denver.  Other friends gave me books and tapes and lots of emails and prayers.  I created a group email list and sent out periodic updates.  I received over 400 encouraging emails during the course of my treatment.
Trust your own instincts, get a second opinion and give yourself time to make decisions.  When Dr. David Hollander, the radiologist told me I had a tumor, he said, “This is a speed bump, not a wall.”  I was coping pretty well until I talked to a local surgeon. After 30 minutes with her, I was totally terrorized and immobilized. It was by far the worst part of the whole experience.  Then Herb connected me with an oncologist, Dr. Sami Diab.  Dr. Diab, who is a kind, caring, patient man, changed everything for me. Within ten minutes of meeting him, I felt like this was an illness, not a catastrophe.  It became a speed bump again.  He referred me to Dr. Sally Clark a surgeon at the Sally Jobe Clinic where I got terrific, caring treatment. (I felt all those Sally’s were a good omen.)  It was five or six weeks from my diagnosis to the surgery and I’m glad I took all of that time to find the right doctors and the right plan of treatment for me.
Join a support group and let others support you.  Herb told me one of the most important things was to join a support group.  The Sally Jobe Clinic in Denver had a weekly support group.  I met many women who had, or were still going through, what I was dealing with. They had answers to my questions and lots of good advice like “get a stocking cap to wear to bed, because without hair you get cold.”  They also knew a wonderful beautician who sold and styled wigs and told me to “go before you loose your hair, because she will match your hairstyle and color”.  They knew of a health club in Denver that had a program supported by Komen.  My greatest fear was not coming back 100% physically after the chemo.  Karen, who led the program, had been through chemo and went on to win a national bike race within two years.  I only went twice, but she and Naomi, who I worked with, were a huge inspiration and support for me.  They also knew that the American Cancer Society had a connection with hotels that would provide one or two nights of free lodging for people in treatment.
I rarely think about it now.  Being a cancer survivor isn’t a big part of my identity.  I’m a woman, a skilled consultant, a ski teacher, a friend, a town council member, who, years ago, had breast cancer.

lynncantrellbw

Survivor since 2003…

It was March 2003. I had my usual workout at the gym and my usual shower. But getting dressed in front of the mirror was anything but usual. I noticed a horizontal dimple on my left breast and I thought I could feel a tiny lump. I had just had a mammogram three months before so I really wasn’t nervous. When I could still feel the lump a week later, I went to my OB. He said it was probably a cyst and to come back in two weeks. It was still there. I went straight to the oncologist. I knew it was bad news when he came back in the exam room with his nurse. Shock, disbelief and terror swept over me.

Then came the decisions: Lumpectomy or mastectomy, chemo or not (my second opinions were divided on this issue). I had a lumpectomy at Valley View Hospital two weeks later, followed by two months of radiation at Shaw Cancer Center in Edwards. I have nothing but praise for these two facilities.

I didn’t have any adverse affects from the radiation except the drudgery of the daily drive from Basalt to Edwards. My friends were angels. Someone offered to drive with me almost everyday and I’d often come home to meals others had prepared for me. I was blessed.

Five years of estrogen depleting Tamoxifin and Arimidex are finally over. I’m optimistic about my health. I look back with gratitude on my cancer experience — the support I received, the many wonderful people I met, the camaraderie, the love. And I’m alive.

leemartinbw

Survivor since 2002…

When I think about the journey I took with cancer, the one word that comes to me is “sacred”. That might seem odd. How could something that can kill you be sacred?

The day I got the news, in 2002, I was at work.” Ms Martin, this is Dr. ……..’s office, we have the results of your …..…you have DCIS Ductal Carcinoma In Situ…. you’ll need to………”

SILENCE, complete silence.,,,,they’re still talking but you hear NOTHING…….your hearing pretty much stops instantly after the word “carcinoma” is said. Because, don’t we all know….carcinoma = death?

I had to get out of there, I had to be by myself, I had to run!!! I went to the canyon, the one place that feeds my soul and for the first time in my life, I felt completely alone. I don’t mean alone like “there’s no one with you”, I mean, ALONE.

sacred • adjective   : holy, blessed, blest, hallowed, consecrated, sanctified.

The sacredness of cancer for me was THIS, this amazing moment where for the first time I believe I was awakened to “reality”. What I “got” in the core of my very being was that THIS IS MY LIFE. I may be a mother, I may have been a wife, I’m a daughter, a sister, I have deep close relationships with amazing people, but no one, not one of those people will walk in my shoes. These shoes fit ONLY me. And you know the best part, these shoes weren’t cancer, they were shoes of LIFE! Of LIVING! In that moment I was completely and totally FREE. I realized that my life, this amazing gift that has been given to me, was mine to either waste or to celebrate each and every day.

When you become conscious of this, colors become more vivid, the air smells amazing, laughter becomes precious and you begin to see “the sacred in the ordinary”. You see that each day you have a CHOICE and when you choose FOR YOURSELF, when you choose LIFE, you are finally tapped into “reality”….and it’s good, damn good!

P.S. Carcinoma DOES NOT = death……… it = LIFE!!!!!!! If you choose to see it that way!

STATUS OF MY CANCER: GONE….thanks to:

26 Radiation Treatments
No Tomaxifin
Regular Breast Exams
Courage & Beauty Of My Children
Amazing Love From Friends And Family
Rose Petals On My Doorstep
Prayers
Twisted Humor
And Faith

jinnyditzlerbw

Survivor since 1999

My experience with breast cancer was one of the worst yet one of the best times IN my life.  The day after my biopsy in Denver, I was busying myself around home but completely preoccupied with waiting for the call.  When it came and I heard the news, life changed instantly.  I had cancer – the feared yet impossible had happened!  My breath was knocked out of me.

The worst part was getting the diagnosis and choosing the right treatment.  How bad is it? How extensive is it?  Should I have the breast removed?  How about chemo? Some suggested I should have both breasts removed, just to be safe.  Others said a simple lumpectomy plus radiation would be plenty.  From one extreme to the other.  I expected that a doctor would TELL me what to do, but the research and the choices were up to ME. Life became less confusing when I accepted that I had to be the general contractor for the doctor, the diagnostician, the surgeon, the medical oncologist, and the radiation oncologist. In the end we made the right choice, and I found excellent medical support in Denver.  Eight years after my diagnosis, I am clear of cancer.

The best part of the experience was the love and support I received from my family, friends and breast cancer sufferers all over the world who somehow found out about my situation and called and emailed their support.  These women were the wisest source of information and support.  As a friend here said, ‘You’ve now joined our sorority!’. My husband and son were with me every step of the way, hugging me, listening to me, driving with me to Denver – what a difference they both made to me.

The most valuable part was the chance it gave me to stop, think and take stock of my life and how I was living it.  I read several great books given to me by family and friends. And I wrote in my journal every day, stream-of-consciousness jottings leading to realizations about changes I needed to make and lessons I wanted to learn.  Within a month I was feeling more awake and alive than I had in years. A spontaneous joy erupted long before we knew the positive results of my surgery.  The combination of love and contemplation had already begun my healing – regardless of what medical outcome awaited me.  The gift that remains today is the wisdom that my life is a gift to be treasured each moment.  Don’t sweat the small stuff!

As I lay on the table in Denver, having the pre-op sentinel node biopsy, the nurse said, “Please tell everyone not to be afraid of cancer. We’re here to help, and we have state-of-the-art support.  If we can catch it early enough, you’ll all be fine.”  She’s right.  My cancer was caught early because I forced myself every year to have a mammogram. Yet every time I had to push myself to make the appointment. Part of me never wanted to know, didn’t want to face it.  Just do it!

nancysmithbw

Survivor since 2005

Prior to October 2005, what I thought I knew about cancers of the female reproductive system was that they were all about the same, and all bad. What I now know is that if a woman has to have cancer, Endometrial (aka uterine) cancer, if diagnosed early, is not such a bad thing.

I was 50, not yet menopausal, when I experienced 6 weeks of almost non-stop vaginal bleeding. I talked to several friends who’d gone through menopause, to see if this was something they’d experienced, and no one mentioned that it could be a sign of uterine cancer. My doctor agreed that it was probably menopause-related, but to be on the safe side he would do an endometrial biopsy. I hesitated to spend the money, and almost didn’t do it, but fortunately I decided to go for it. I think he was as surprised as I when the results showed cancer, meaning that I would need to have a hysterectomy.

While I was anxiously awaiting my surgery and learning everything I could about endometrial cancer, it was not reassuring to learn that 1/6 of women who get it die of it. The key to my happy outcome was early diagnosis. Therefore, it’s alarming that no women I’ve talked to are aware that unexplained bleeding is a sign of possible endometrial cancer.

Further tests showed that things had progressed far enough that I would need an abdominal hysterectomy, rather than the less invasive vaginal hysterectomy, so that the gynecologist could see the entire abdominal cavity and be sure he got everything out of there. I heard many horror stories about long recoveries from abdominal hysterectomies, but in my case, I bounced back as quickly as I had from similar surgery when I had an ovarian cyst removed at the age of 22. They removed my remaining ovary and my cervix along with my uterus, and since I wasn’t using any of them, it felt good to be rid of them. During my 3 days in the hospital, the only roommate I had was a very down-to-earth woman who’d survived breast cancer and was in to have her other breast removed, because “she was tired of being lopsided”. Neither of us had any feelings of being “less of a woman” because of missing some body parts.

Within 3 days of the surgery, menopause hit literally overnight. I started having hot flashes, and my feet suddenly started getting cold at night. (The hot flashes have eased off after 3 years, but the cold feet are with me for good. I have a nice collection of bed socks, which do the trick.) I also suddenly had elevated blood pressure, after having had low blood pressure all my life. The nice thing was that I knew it was menopause and not just in my head. I have brought my blood pressure under control with a combination of reducing salt and adding magnesium in my diet (as well as magnesium in pill form), and taking vitamin B-6 as a diuretic. The magnesium also helps ward off osteoporosis, along with the 1500mg of calcium and 1000mg of Vitamin D which I take daily.

My cancer turned out to be both estrogen and progesterone dependent. Therefore, I certainly can’t use estrogen cream for the vaginal dryness that became a problem after the surgery. But my gynecologist says that estriol (as opposed to estadiol) cream is safe to use, and that’s helped a lot. Estriol is available from compounding pharmacies and on the web.

After the hysterectomy, I spent 2 weeks at home, (the most relaxing vacation I’d had in years) and was completely recovered after 6 weeks. No radiation or chemotherapy was needed because the surgery was so successful at getting rid of all the bad stuff. The gynecologist who’d done the hysterectomy did a pelvic exam every 3 months for the next 2 years, and did pap smears every 3 months for the first year, to confirm that there were no tissue abnormalities indicating the return of the cancer, and after 3 years, all is well.

nancyreinisch2bw

Exerpt:  Chemosabee:  A Triathlete’s Journey Through the First Year of Breast Cancer

I had been following a tiny palpable lump in my left breast since a physical exam in July of 2005. I had multiple mammograms, ultrasounds, and physical exams.  The lump was barely visible on the mammogram; it was a tiny speck on the ultrasound and was not large enough for a needle biopsy. To me it felt like a piece of grit or dirt but hardly what I would call a lump. The doctors suggested either surgery to remove it or surveillance with continual three month follow-ups.

Paul, my husband and a physician, urged surgery, but I opted for surveillance.  I was in the middle of my triathlon coaching season and was training and guiding blind triathlete Nancy Stevens. As Team Nancy, we had completed six triathlons and now had a chance at a World Championship title at the ITU Honolulu Age Group World Championships in Hawaii. If we won, we would be the first all-woman blind and sighted guide duo to win a championship.  If I had surgery, I was afraid my recovery time would keep me out of the pool and in turn compromise Nancy’s ability for a world championship.  I wanted to be strong to guide Nancy, and I was just as excited for my first ever visit to Hawaii. And besides, at fifty-three, I was as healthy and fit as I’d ever been. So I chose to wait.

Team Nancy went to Hawaii on October 6, 2005, and we won gold in the Visually Impaired Women’s Division at the ITU Honolulu Word Championships!  Nancy Stevens has won many medals in her athletic career but I believe this was one of the sweetest. She endeared herself to the crowd when she climbed up on the first place podium and stood backwards to the crowd until I turned her around!  Paul and I spent the next week playing Hawaiian tourists, complete with a red convertible, snorkeling, and sunsets on the beach. It was everything I had hoped for.

With my triathlon season over I settled back into my fall routine of work, family, and recovery exercise.  I made an appointment with my doctor to check on my lump.  My first surveillance ultrasound showed the lump had decreased in size and was even less palpable than in previous months. I took this to be a good sign and quite honestly I put the whole thing out of my mind.  I think my doctors and husband did too.

I continued with my life until one morning in April 2006, I gave myself a breast exam and realized the piece of grit in my left breast was now pea size. It was hard and solid. I could feel it. Paul could feel it.  There was no doubt that it was the same lump and it had grown.

Within twenty-four hours Paul and I arranged a consult with our local surgeon to remove the lump. No more waiting. No more surveillance. Time to get it out. We scheduled surgery.

We called our sons Chas, twenty-three, and Marco, twenty-one, at college at Duke University, in North Carolina to notify them of my pending surgery. We are family of no secrets and we wanted them to be part of the process.

On Thursday, April 6, at Valley View Hospital, in Glenwood Springs, Colorado, Dr. Randy Ross successfully excised a 7mm tumor. That’s less than a centimeter in size and about the size of a grain of rice. This is considered a very small tumor. Unfortunately, the biopsy revealed “infiltrating carcinoma with mixed ductal and lobular features” aka breast cancer.  The next surgery revealed that the tumor was very aggressive and the cancer had already spread to my lymph nodes. I was now in Stage II breast cancer. Within the month I discovered I was positive for the BRCA 2 Breast Cancer and Ovarian Cancer gene. I truly thought that my luck in life had run out and I should start writing my last will and testament.

During the first week of my diagnosis I had my first decompensation. I could not keep up with the phones and email messages coming to me from friends and family. The yellow pad by my phone filled with lines after lines of well wishers–all with “call me back” requests. It’s usually not my nature to ignore phone calls but I just couldn’t keep up.  Each phone call took time and though I appreciated the concern, the avalanche of love came with a price. At one point, I simply looked at my yellow phone pad and started to weep

It was at this time that the non-profit website CaringBridge came into my life.  The site proved to be quite therapeutic for me.  I would look forward to the end of each day to make a quick note about my daily cancer journey. From hospital diagnosis, to shaving my head, to first chemo treatment, to my “breast recall” and reconstruction, to the final “one year survival” entry, the journal became my ally in healing.

Together we made it through a complicated year of ups and downs.  I remain to this day optimistic and confident that I have done all I could, with all I have, to put cancer out of my body and mind. I remain humbled by the outpouring of support from my family, friends, and community. I thank all of you who stood by my side. Without you I would not have survived the year nor be here to share this journal.

In November, 2008, with two years of recovery under my belt I published my story Chemosabee:  A Triathlete’s Journey Through the First Year of Breast Cancer. The book is a compilation of my journal writings, photos, and words of wisdom from my friends and family during the difficult year following my cancer diagnosis.

Sincerely,
Nancy Reinisch
The Chemosabee
www.chemosabee.com
www.atlasbooks.com

janjohnson2bw

Survivor since 1976…

Life is Beautiful – I’m one of the lucky ones

I was diagnosed with breast cancer in the summer of 1976 at the age of 39.  Due to the vigilance of my wonderful doctor, the cancer was caught at a very early stage so my prognosis was good.  However, the fear associated with cancer gripped me in the days between my diagnosis and surgery.  One night I thought that the bed was shaking.  In fact, it was me trembling so hard that I was shaking the bed.

The most difficult part of the experience was telling my two teenage daughters and my eight-year-old son that “Mom has cancer”.   The memory of their fear still brings tears to my eyes and is difficult to talk about.  As I sat in the surgeon’s office while he was telling me what the mastectomy involved and what I would look like afterwards, I wanted to scream “I don’t care!”  All I wanted was some assurance that I would live to raise my children. If it meant sacrificing a bit of my anatomy it was OK by me.

Immediately after the initial recovery from surgery, I took great glory in all life, even to the point of insipidly reveling in watching grasshoppers jumping up on my legs as I walked in the fields near our home in Fort Collins.  After a few months, I must admit, I was back to enjoying watching my cat consume the grasshoppers, but the joy in living remained.

The blessing that cancer bestowed on all of us was that we were made painfully aware of the fact that life is short and unpredictable.  As a consequence, even through the typical trials and family arguments associated with raising teenagers, we never said things to each other that we would regret later.  To this day, I believe that we are closer as a family, in part because of the experience.

I have been cancer-free for 32 years.  I know that many women diagnosed with breast cancer travel a much more difficult path than I did.  I admire you.  I wish you a beautiful life and “hyacinths to feed thy soul”.

alisatillungbw

Survivor since 2003

Some say faith is a gift we have to remind us there is a God.  I believe you cannot really have faith, until at one point, your concept of faith is truly tested.  Then, at that particular moment, God steps in and faith steps up.  Any faith without a test, is just merely coincidence. For me, my life, and my faith, began in May of 2003.

“Alisa, I’ve never had to make a telephone call like this in my life, but you have to begin fasting tonight at midnight, so we don’t have much time.  Your surgery is set for tomorrow- you have cancer……”.  The ringing in my ear and the sound waves coming from the phone will be a memory that stands with me forever.  I can’t tell you what Dr. Robinson said to be after that.  It all sounded so Charlie-Brown-like.  Remember the teacher? The one who we never heard speak during all the years of the show?  The one that just said “wah wah wah wah wah wah”?  There I was, stuck in the Charlie-Brown series that didn’t seem to end, but there I was, the punch line too!  Funny, just a few nights before, I had sat in bed knowing I was going to die- after all, who has a lump appear out of nowhere without redness, irritation, bruising or pain?  There I was remembering the first time my daughter (at this point 2 years old) fell.  The doctors always said if there’s swelling, bruising and a bump that goes out, it’s a good thing….. what now doc?  What if there’s no swelling or bruising, and what if the bump is going in?  Can’t be good I thought.  Can’t be good.

The next year of my life, I’d like to say, was a blur.  But it wasn’t.  Doctors and chemo, and radiation and doctors.  Anti-nausea pills, suppositories, CBC’s, MRI’s, CT’s- funny, as the treatments continue, you actually get used to being referred to in third person.   Family visits that made me happy, the sounds of my daughter laughing that, until she left the room, made me smile.  The alone time that made me cry.  The husband that married me just 9 weeks before diagnosis.  The love for his strength, the hate for his strength. The fight for my life.  The fight for my rights to just be.  The bitterness.  The sorrow.  The belief that there’d be tomorrow.

Today, 5 years later this month, the field calls it remission.  Today, whenever someone says the word chemo, I can still taste it in my mouth.  Today, I look back and hate that time.  Today, I look back and remember- that’s the day I started living.  Today, I remember, my life started when I realized it could all be gone.  Today, I know, my life started in May of 2003.

I am a survivor.  I am a mother, I am a daughter, I am a sister, I am a wife.

jacksilvermanbw

Survivor since 1983…

I drove thirsty and solo, on an empty stomach, to Eisenhower Medical Center in Palm Desert, without  seeing other cars on the road, so insular and self absorbed with my cancer surgery that day. I parked my car in a seemingly empty lot.

After registration I was directed by pointed finger to the surgical wing where
I was told to go
leave
my clothes in a locker room and proceed to the operating theater.

My name was never used.

Near the locker room was a small plastic chapel with a large bible on a stand in front of the pulpit.

By this time my soul and being were encased in titanium and the thought of never leaving the hospital was forced to the bottom of my consciousness. I turned the pages to the twenty-third Psalm. I couldn’t see the words because tears from the previous readers had washed the ink away.

I experienced relief unknown to me as I understood I wasn’t alone.

novabw

Survivor since 2006…

Shopping in our local grocery store one day a women who I hadn’t seen in many years said, “Hello” and also said, “ I won’t ask how you’re doing because you are the picture of health!”  I loved hearing that as she was the third person who had said that to me in the past few weeks.  And it felt good because I did feel good, was proud of my radiant health, my devotion to my yoga practice, healthy eating and well, I thought I looked pretty good for a 52 year old woman.  I was the picture of health!

Two weeks later, after a routine colonoscopy, I was told that I had anal cancer….probably had had it for about 8 years.  Anal cancer is a squamous cell carcinoma – a skin cancer- that grows in a place where “the sun don’t shine.” I wasn’t shocked but I was concerned.  For years I had had bouts of bloating, constipation and more recently itching and pressure in the anal canal.  My doctor had told me two years earlier that I had a hemorrhoid so I attributed these minor annoyances to that.  But deep inside, I think I knew something was wrong.

I was told the good news was that this cancer is pretty curable; the not so good news is that it’s a brutal treatment and that I’d probably lose a lot of weight and be on heavy duty narcotics for a few weeks.  I was up for the challenge and the opportunity to see how well I could walk the talk of being a yoga teacher.  How could I walk fearlessly into the fire, how unattached could I really become to this body?  I knew I needed help and called upon my two yoga teachers, John Friend and Rod Stryker. They reminded me of my inner light, of my strength, my courage and gave me specific yoga tools to help me along this journey.  I also seized the opportunity to do something I had never done before….I called out for help from my friends, students, family and neighbors.  I knew that this cancer was providing me with an opportunity to soften and live life in a way I had never done before.   I sent out an email blast and in less than two days had a six week calendar filled with offers for rides and meal delivery and a long list of names on a waiting/backup list.  How great it was to know that so many were there for me.

I delayed the treatment two weeks beyond what the doctors wanted.  I wasn’t ready.  I needed the time to prepare my mind…..to do this on my terms and not on the doctors or radiologists terms.  The cancer was slow growing ….two weeks did not matter.  Then, I was ready.  Armed with my eye pillow, headset with Yoga Nidra (Yogic Sleep) tapes, and cue cards with healing and clearing mantras, I approached the radiation table…my husband by my side.  At first the radiologists did not know how to adjust to these necessities of mine but over time, and seeing how well I was doing, they began to remind me to say my mantra and would ask if my tape was all set.  The 25 minutes of time on the radiation table each day became the most enjoyable part of my day.  A time to relax and remind myself of the gratitude I held in my heart, and of my desire to live each moment fully.

My meditation practice served me well also.  I really was able to stay in the present moment and remain mostly unattached to this body.  To be the witness…..”how interesting to be throwing up and having diarrhea at the same time…..how curious that this body does not have the strength to walk down the driveway…..hmmm…that pain is pretty intense….I wonder how long it will last?”
The narcotics….I took them one and one half days.  I got burned, I lost some weight, I couldn’t sit down, I vomited, I cried and I remembered that this was not permanent that this was not me….it was just temporary…. I kept looking towards the light……and it was there….sometimes barley visible but I’d get glimpses now and then.  And besides, I was determined to show the doctors that it could be done another way, to show those who said, “you have to learn to be weak” that you didn’t have to.  Soft yes, weak no.

Two days before my treatment was to end, I walked into the wonderful Shaw Cancer Center in Edwards and pronounced that if one more thing was done to this body it WOULD die. They believed me and sure enough I was put into the hospital immediately and received blood transfusions….no platelets, very few red or white blood cells.   I was thankful that I spoke up when I knew it was necessary.  I was thankful for my wonderful doctors, nurses, and the radiology techs that had worked with me in such a positive way.  How lucky I was to receive so much love!

Today, two years out, I am cancer free.  It has been a long struggle to gain my strength, stamina, hair, and dignity.  This disease can be humbling and humiliating. I am teaching yoga again and have found that my teaching has become greater; simply because I have opened to what is, because I now understand that we don’t know everyone’s story, that the struggle to be human is a great undertaking.
Today I am teaching yoga to other cancer patients and communicating with others who face this disease…..offering an ear and maybe sending some rays of light.

Here is what I know now that I didn’t know then…

1.    My anal cancer was most likely lurking inside me for many years. It is the by-product of HPV (human papillomavirus) which is a common virus of the skin and mucous membranes.  About 80% of the population has contracted HPV at some point in their lives, most likely at a time when they were most sexually active.

2.    There are about 100 types of HPV, 30 of which are spread through genital contact (typically sexual). The low-risk variety (@15) can cause genital warts, and the rest, the high risk variety, can cause cervical cancer OR anal cancer. In order for the cancers to develop, the HPV virus must first be present, then factors such as smoking or an aging immune system trigger the emergence of the carcinogens.

3.    In most people, the body’s immune system fights off or suppresses the HPV before it causes problems, but if the infection persists, it can cause the cells to become abnormal.

4.    Many GYNs and OB-GYNs are now doing anal pap smears, which you can request. If you have hemorrhoids or are told you have them, ask for them to be looked at with an Anascope… a simple and inexpensive, although uncomfortable, office procedure. If your GYN does not perform a rectal exam, ask for it.  It might well save you a lot more pain farther down the road.  This cancer, caught early on, can be treated and removed easily… just as any other skin cancer caught in the early stages.

Now, when I walk into a store and meet someone that I have not seen in many years… those who don’t know my story, I am even more overjoyed when I hear them say “YOU LOOK LIKE THE PICTURE OF HEALTH!”  Life is Marvelous and so full, my cup overfloweth with grace and abundance!  I have not forgotten my journey because to forget might mean missing out on what I have learned and yet I do not hold onto my cancer.  I do not really see myself as a survivor…I have trouble with that word….I never was at risk of not surviving….what ever was to be was to be….it was all about the journey and how I lived that.  Like all of life, it cannot be measured in time but in how we live it ….like art, like yoga, like dance….its all about the process….the transition from one point to the next…..

Life’s splendor forever lies in wait about each one of us in all its fullness, but veiled from view, deep down, invisible, far off. It is there, though, not hostile, not reluctant, not deaf. If you summon it by the right word, by its right name, it will come.
-Franz Kafka

blandnesbitbw

Survivor since 1995…

In the fall of 1995 at the age of 47, I suddenly learned that I had colon cancer. It all happened so quickly that to this day when I read a story about cancer survivors, I often momentarily forget that I am one. I was incredibly lucky to have early detection with a fast surgery and speedy recovery. My mother, a colon cancer survivor herself , encouraged me to do an annual hemocult (take-home colon test) from the time I hit the age of 40. In 1995, Dr. Caskey called me to tell me that my hemocult was positive, and that I needed to have a colonoscopy to see what was going on. I had absolutely no symptoms. I was in a state of disbelief from the moment he called. We both thought the test might be a false positive and that perhaps I had eaten something that might have skewed the results. I was fortunate to be able to schedule a colonoscopy three days later during which a small cancerous tumor was discovered.

I was told to go home, “get my affairs together” and go back to the hospital the next day. I was in total shock. I managed to arrange my life for the next week or so in terms of my business commitments, my family, my dogs. I will never forget how I felt that day. I can recall the fear I felt then as if it happened this morning. I just kept thinking–this can’t be happening to me, this can’t be real but it was. I had a colon resection two days later and was very fortunate to not have a colostomy, radiation or chemo. I spent another seven days in the hospital and returned home. All of the hospital staff were wonderful,  I felt so safe there. I was pretty much back to my usual routine in about six weeks. Other than having to undergo a lot of colonoscopies (the prep being the worst part of it!), my life feels very normal.

Because of my own experience, I cannot stress enough the importance of testing for early detection, especially if you have any family history of cancer. Doing an annual hemocult is so easy and a colonoscopy at the appropriate age is so important. Colon cancer, if detected early, is treatable with a complete recovery and an excellent prognosis for the future.

During my experience with cancer, my husband and my friends were incredible. I heard from so many people, even those who weren’t that close to me were brave enough to actually call me in the hospital to see how I was doing. When I got home, friends, old and new, offered to help with everything — bringing me groceries, walking my dogs, taking care of everything I needed. I will never forget those people and what they did for me and how they made me feel.

Cancer made me look at the big picture and see what is truly important. I love my life and appreciate it more and more as I get older. Because of my cancer scare, I believe I value life much more than I might have and appreciate how important it is to have good health. To me good health and the support and love of family and friends are the most important things in life.

freddurhambw

Survivor since 2006…

Something had gone terribly wrong that fine autumn in the south of France. Food and wine had been a passion and a vocation for so many years and this epicurean pilgrimage had been in the making for nearly as long.  By Provence I was no longer eating. I had been nauseous, something that was not normal for me, and even worse, constipated, which as my family reminded me, was never an issue. The grape harvest in Burgundy and the strolls through fabled Paris neighborhoods were memories to be treasured. However, as I flew back to my life in the Colorado mountains, I had a sense things were not going to get better.

Arriving home, a cleansing diet for my liver and colon seemed to make sense. As I was not eating much at that point, taking sustenance from fruit and vegetable juices would have more than just a cleansing benefit. I enjoyed the good fortune of being able to walk with my dog to work everyday, which was managing and directing a bookstore. It was while walking to work on an early November morning, it had been snowing, that I took a moment to gaze at the beauty of the surrounding mountains. I was immediately aware that my vision was out of focus. The mountains blurred as if I was looking through glasses that were a wrong prescription. Over the next few days the symptoms worsened. Additionally, my sleep was increasingly interrupted by my need to pass all of the liquids I was taking in. A vicious cycle had started with my need to drink major quantities of water throughout the day and night with the subsequent need to visit the bathroom regularly. A chance meeting with my friend and optometrist, Amy Cecil, had me in her office for an eye examine. The results of those tests indicated no pathology, however, as Amy suggested, “Fred, you shouldn’t be driving – your vision is that bad.” She wasted no time in calling my longtime primary care physician, Dr. Carl Schiller. In Carl’s capable hands, the tests he ordered indicated my blood sugar was raging out of control and my liver function numbers were pushing into the red zone. The fruit smoothies I was living on were certainly contributing to my elevated blood sugar, which was causing the distortion to my vision. There was every indication I had moved into adult onset type II diabetes. A decision was made to begin a regimen of daily insulin injections in an effort to get my glucose levels in line and also because the oral diabetes meds I might have been able to take in lieu of the shots metabolized through my liver and might adversely affect that organ, which was still functioning abnormally. Within a few days my vision returned to normal. I was sleeping through the night and in general feeling better than I had in a while. Then the itching began.

It started simply enough, some itching around my elbow and knee joints. By the holidays I was becoming virtually incapacitated with pathological itching. It would race across my body in waves and once I started – I’d scratch until I bled. My liver tests indicated it was still functioning abnormally. Dr. Schiller referred me to Dr. Gerard Tomasso, a local gastrointestinal specialist. My energy levels were still good. I was working my customary fifty to sixty hours a week and skiing from time-to-time. I had lost nearly 30 pounds since France, which I attributed to a closely monitored diet the result of the diabetes. This was now to become a game of medical “Twenty Questions.”

The testing began in earnest in January of ’07 with a multitude of blood tests checking for, amongst other things, the possibility of some form of hepatitis perhaps picked up from something consumed on my travels. Samples sent to Mayo Clinic and the Center For Disease Control ruled that out. External ultrasound scans indicated nothing out of the ordinary. Stool samples eliminated parasites. An MRI was out of the question due to a lifetime of breaks and bursts that had me filled with metal from head to ankle. However, a comprehensive, full contrast CT scan came up negative. Meanwhile, the itching was driving me to near madness and was not responding whatsoever to the limited number of medications available for treatment. Long hot showers seemed to provide the only temporary relief not only from the itching, but also from the onset of chills that had begun to plague me. I continued to lose weight, up to 3 – 5 pounds a week. My bilirubin count was still within the upper limits of normal with no signs of jaundice. The easy questions had been answered; the tougher ones now had to be asked.

The testing was going to become invasive and with that came risks. I decided to take a couple of weeks off from the testing in order to regroup and consider some of the alternative diagnosis and therapies that were available. But acupuncture provided no relief from the itching and Chinese and homeopathic therapies were going nowhere. I scheduled a liver biopsy to be performed in mid-February. As I was being prepped for that procedure Dr. Tomasso asked me, “If it wasn’t for the itching you wouldn’t be here would you?” I had to agree. I was still working as hard as ever and managing to get a day or two of skiing in. The liver biopsy, done externally and as an outpatient, came up with nothing. With more weight coming off and my bilirubin numbers going up it was time for an endoscopy. This procedure, done in an operating room, allows a physician to see first hand what is happening, which in my case included my stomach, duodenum, gall bladder, liver and bile duct. It was immediately apparent to Dr. Tomasso that my bile duct was not functioning due to constriction. He was able to place a stint in the duct, which opened it up and allowed the flow of bile from my liver into my digestive tract to begin again. The itching, called pruritus in medical terminology, was caused by the bile backing up in my liver due to the obstruction. The bile transformed to bile salts and was picked up and deposited throughout my body by my circulatory system. The itching was caused by the bile salts trying to “percolate” out through my skin. Within 36 hours the itching was to completely stop. Dr. Tomasso was relating all of this to me bedside in the hospital later that evening.  There were only a couple of questions remaining to be asked now, “What’s causing the bile duct obstruction, doctor?” But I already knew the answer.

Adenocarcinoma of the pancreas, a cancerous tumor growing in the head of my pancreas – pancreatic cancer. That possibility couldn’t be grimmer. The pancreas “silently abides the presence of a growing cancer for sometime. When symptoms finally do manifest they frequently mirror those of other disorders,” as in my case, “so that by the time the tumor is identified, in three out of four cases it has spread beyond the pancreas.” This was one of the “put your affairs in order because you only have six months to live” kind of cancers. Time was of the essence now and we needed to verify this diagnosis immediately. That testing could be done at the University of Colorado’s Medical Center in Denver at the Anschutz Cancer Center. Within a week I had an appointment with Dr. Raj Shah, a leading practitioner in the field of pancreaticabiliary endoscopy. He performed a procedure using an endoscope with ultrasound imaging capabilities. The images derived from that instrument indicated a tumor present in my pancreas. A fine needle biopsy, which was able to be done at the same time, left no doubt about the diagnosis. A PET scan showed my pancreas glowing white hot, but apparently no cancer metastasizing anywhere else in my body. Dr. Shah’s testing indicated a tumor exceeding 4 cm. in size, but showing negative margins. In other words, the cancer had apparently not spread beyond the pancreas and the tumor had not yet wrapped itself around the major blood vessels running through the pancreas. There was a chance this tumor was operable.

Much is said of the need to be one’s own advocate when fighting cancer. I would suggest one has little choice to be anything but as informed and involved as possible in waging what is a battle for one’s life. By taking advantage of today’s wealth of medical information available through the thousands of health oriented websites and blogs on the internet as well as a steady stream of books on cancer being published every year, it was relatively easy to gain a tremendous amount of information on what it was I was facing. What became immediately apparent from my research was that in order to have any chance of living more than six months I needed to find the most experienced surgeon available. I needed a doctor who regularly performed the very technical and complicated pancreatic resection surgery known as the Whipple procedure (named after the doctor who pioneered the procedure). Furthermore, that surgeon needed to be surrounded by a top-notch multidisciplinary oncology team to help plan my treatment and that treatment needed to take place in a state-of-the-art healthcare facility that supported leading edge cancer research including a broad range of clinical trials. The choice, for me, seemed obvious. Dr. John Cameron, who had been chief of surgery at Johns Hopkins Hospital and who has specialized in and performed more Whipple procedures than any doctor in the world, was who I needed to see. The Multidisciplinary Pancreatic Cancer Clinic that is part of the Sol Goldman Pancreatic Research Center, which in turn is part of the Sydney Kimmel Comprehensive Cancer Center at the renowned Johns Hopkins Hospital in Baltimore, was where I needed to be. Dr. Greg Stiegman, the division head of the G.I. Tumor and Endocrine Surgery service at the University of Colorado Anschutz Medical Center and a noted surgeon himself, to whom I owe a great debt of gratitude, was kind enough to refer me to his friend and colleague, Dr. John Cameron at Hopkins. Dr. Cameron and his team agreed to see me. Medical records were forwarded, dates were set and I was headed to Johns Hopkins.

There was no doubt I couldn’t get to Baltimore fast enough. My health was deteriorating at an alarming rate. I had lost nearly 60 pounds since the onset of symptoms in France five months earlier. I had to have the stint in my bile duct replaced as it had failed due to the relentless, ever-increasing growth of the cancer. Pain had become an issue and along with the continuing problems with the stint I had to be readmitted to the hospital three days before I was due to take a commercial flight to Baltimore for the surgery. On Friday, the day I was to be on that jet to Hopkins, I was flat on my back in the hospital with a significant fever, a lot of pain and a very concerned Dr. Tomasso. A series of phone calls between Dr. Tomasso and Dr. Cameron and his team at Hopkins, in which Dr. Cameron stressed the urgency of getting me to Baltimore and in his care, led to the decision to release me for travel despite my condition. My employers and good friends, Clay and Louise Bennett, were adamant that I make use of their corporate plane, which I departed on along with my son the next day. The last of the “Twenty Questions” was about to be answered . . . life or death?

My memories of my pre-surgery time at Hopkins are a collage of faces, scenes and senses; my very concerned family and friends who had traveled to Baltimore to be with me, the flurry of admitting staff, nurses and medical technicians, the stream of interns, residents and physicians that are part of the dynamic of a major teaching hospital. The surgery took Dr. Cameron and his team over six hours to perform. A pancreatic resection or Whipple procedure is a major surgical undertaking. My gallbladder was removed. The lower part of my stomach was also removed along with the duodenum, which connects the stomach to the small intestine. The bile and pancreatic ducts, which drain into the duodenum, were re-plumbed to drain into the small intestine, which had been surgically attached to the stomach. The rerouting and reconnecting of all these major and minor organs and the circulatory support systems is surgery requiring skill and teamwork of the highest order, all done to eliminate as much tissue as can be removed that might contain cancer cells. Dr. Cameron personally briefed my family on the outcome; a four and a half centimeter cancerous tumor had been removed along with the upper part or “head” of my pancreas. The tumor had not involved itself with any of the major blood vessels that run through the pancreas, which is a one of the reasons this cancer is often times found to be inoperable. Twenty three lymph nodes surrounding the pancreas were removed of which two were found to be diseased by biopsies performed at the time of the surgery. I was in critical but stable condition with the next challenge being the potential for complications due to the complexity of the surgery.

My first post-surgery memory was waking up in the intensive care unit with a nurse asking me my name and if I knew where I was. Upon answering those questions correctly, she pointed at a chair next to my bed and informed me that Dr. Cameron was expecting me to be up and sitting in that chair sooner than later. I remember laying there and muttering, “You are kidding me, aren’t you?” She wasn’t and with some help I was up and sitting within hours after my surgery despite an incision that ran from my sternum to three inches below my navel. This turned out to be the Cameron “mantra,” get up and get going. My three weeks of post-op recovery consisted in large degree of my mornings, noon and nights spent dragging my I.V. cart along with me as I walked literally countless miles through the labyrinth of hallways that weave their way through the Johns Hopkins Hospital complex. As hard as it was initially, I believe that Dr. Cameron’s regimen played a key part in my recovery, both physically and psychologically. Not that my post-op was without complications. When I started to eat solid foods again, my digestive tract had a difficult time assimilating fats. This required me to go back on intravenous nutrition intake to allow additional healing to take place. This added about a week to my hospital stay. By the last week of May I was on my way back to Colorado.

My strategy for fighting this cancer was based on a three part offense I had formulated in my initial research. I had made it through the first battle with the surgery at Hopkins. I felt it was important to not only cut out the disease, but to also follow up with a “one-two punch” to eradicate any remaining cancer cells.This combination consisted of chemo and radiation therapy. I chose to do this regimen in Colorado as it allowed me to stay involved with the busy summer demands of my business. My chemo treatments consisted of a combination of Taxol and Gemzar, which was administered through a port I had surgically implanted just below the skin in my upper chest. A good decision that eliminated the potential of problems from intravenously administering these strong chemicals. My schedule was every Monday for six weeks. The radiotherapy, which was conducted at the Shaw Regional Cancer Center in Edwards, Colorado under the direction of Dr. Patricia Hardenbergh, consisted of treatments five days a week for six weeks. I was able to drive myself the one hundred and twenty mile round trip each day through the first five weeks of the treatment; however, by the sixth week I needed someone to drive me. The side effects of the chemoradiation had caught up with me. I needed to nap every afternoon, I had become mildly nauseous constantly and my appetite had dropped off considerably. My weight was down to a low of one hundred and ninety four pounds from a high of two hundred seventy five pounds prior to the onset of the disease. But in comparison to the many other patients I met who were undergoing similar treatments, my side effects were mild. I did not lose my hair, although it did thin considerably. Other than one or two occasions, I was not sick to my stomach and I was able to eat pretty much through the entire six weeks as well as the weeks following the treatments.  I made a decision prior to starting these treatments to try to lessen the impact of the side effects through the use of marijuana. Several people I spoke to who had gone through chemo and radiation highly recommended I consider this as a real option to help lessen those effects. I can state unequivocally that I would have suffered side effects, especially nausea and loss of appetite, far greater than I did without using cannabis. I strongly support, from first-hand experience as a cancer patient, the use of medicinal marijuana. There are, however, side effects from chemotherapy that can take up to a year to get over. This can include a vague but real malaise and the slow to diminish effects of what is known as “chemo-brain.” This phenomenon can best be described, in my case, as a general mental spaciness, a dulling of the sharp edges of one’s mental faculty.

With the cancer surgically removed and every effort made to eliminate any further cancer cells through the chemoradiation treatments, it was on to the third part of my cancer fighting strategy. I felt it was important to find a clinical trial program that focused on eliminating any free pancreatic cancer cells that might be lurking somewhere in my body waiting for an opportunity to metastasize sometime in the future. Part of my reasoning for seeking out Dr. Cameron and Johns Hopkins Hospital was a clinical trial being conducted at that facility, which was showing real promise. Dr. Dan Laheru and Dr. Elizabeth Jaffee with key team members including Barbara Biedrzycki and Beth Onners had been working on a pancreatic cancer vaccine. A layperson’s explanation for a very complex bio-genetic concept is to imagine a pancreatic cell that has become cancerous due to a series of genes that make up a segment of that cell’s DNA structure, whose purpose is to provide immunological defense against that very cancer, somehow having been “switched off.” The objective of their research has been to genetically reengineer those genes to “switch back on.” This cutting edge approach to cancer therapy is happening with a number of cancer types and holds great potential for significant progress in the fight against cancer. I had “one foot in the door” as a previously treated Hopkins patient, but I needed to be cancer free as determined by a series of high resolution CT scans to occur six weeks after the conclusion of the chemoradiation treatments.

In September of ’07 I was back at Johns Hopkins where, if the CT scans showed me to be cancer free, I would remain for five days of testing (primarily blood work) after the injection of the vaccine. The injections were comprised of two shots in each thigh and two shots in one of my upper arms. The lead-up to the CT scans was nerve wracking . . . had the cancer returned? I met with the doctors after the test results had been reviewed and was relieved (an obvious understatement – there are no words to express that moment) to learn they had found no cancer and that I had been accepted to be part of the ongoing clinical trial. The September appointment was followed by three consecutive monthly visits for additional vaccine injections. Thereafter, the protocol calls for me to return every six months indefinitely for CT scans to determine whether the cancer has returned and for another round of vaccine injections.

June ’08 arrived and I was back for my six month check-up as part of the pancreatic cancer vaccine clinical trial. It had been over a year since Dr. Cameron had performed my surgery and nearly twenty months since the first symptoms changed my life that autumn in France. My health had stabilized as had my weight. I was skiing and hiking regularly and working more than full-time. The CT scans were scheduled for that Monday morning at 9:00 am. As I lay there passing back and forth through the eye of the machine that would foretell my future, I heard that old question once again being asked, what was it going to be . . . life or death? But I already knew the answer – life had chosen me.

Postscript: Later that afternoon on that same Monday in June of ’08 I was sitting in the oncology waiting room at the Kimmel Cancer Center at Hopkins waiting for my vaccine injection appointment. I’d spent some time in that waiting room over the last year. I found it sobering and often emotionally difficult to watch the coming and going of so many very sick people. They were old and young, of every race and persuasion and often accompanied by a spouse, family member or friend. My heart ached for their plight and I was mad as hell at the disease that had brought them here. A big summer thunderstorm had rolled into Baltimore that afternoon and the lightning was flashing and rain pounding at the windows. The lights in the waiting room flickered once or twice and then went out. Somewhere in the dark a voice called out, “We’re not going yet!” There was silence for a moment and then an incredible laughter that spread across the room as the lights came back on. In that moment I realized that I was not amongst victims, but was in fact, surrounded by heroes. Heroes one would never recognize, each in their own way waging a warrior’s effort. My spirit soared on the energy of all those who fought this good fight whatever its outcome. In their strength I found mine.

jillgarlingbw

Survivor since 2003…

It’s with a lot of happiness that I sit down to write this on the 5th anniversary of my cancer diagnosis! It has been a week of reminiscing, reliving the fears, and celebrating recovery. The time has really flown by and as I sat with a woman yesterday who was experiencing day three after her first chemo treatment,  I longed for just the perfect words to let her know she will be OK.

It was exactly one week after my 50th birthday that I was diagnosed with breast cancer.  Even now,  the events that soon occupied nearly all of my life for the next 12 months, seem surreal. I think it is one time denial was beneficial! I had a lumpectomy, chemo and radiation for Stage I disease. I was very lucky it was found on mammogram early. My son was 14 and my daughter 9 at the time. Fortunately, with so much support from my husband, family and dear friends, we were able to keep life on a pretty even keel. I worked part time and had incredible help from my co-workers in covering when I just couldn’t. I took advantage of long naps in the middle of the day. Most of the time, I felt good enough in the mornings and the evenings to really enjoy my family and be “normal”. My kids knew what was going on and we talked about it openly and I don’t think they ever really felt scared. In fact, when I asked my daughter if she would like to write something to go with our picture, she replied, “Mom, I don’t really remember very much about it.” I am so glad that our open and positive approach was that helpful. From the outset, my prognosis was excellent and I felt very assured that everything was going to be OK.

And now it has been five years and I am thankful to be writing about it. It is a life changing journey that I can now say has brought more richness and meaning to my life than I could have ever imagined.

sharonmcbaybwweb

Survivor since 1984…

Indeed, today I am a thriving, enthusiastic breast cancer survivor after 12 cancer-related  surgeries including 3 biopsies,  2 lumpectomies, 2 modified radicals, 1 false alarm, and 4 reconstructive surgeries over the last 22 years.

My first challenge with breast cancer was in March 1984 when I had 2 young preschoolers.  While playing Women’s League Soccer in Virginia, I stretched my pectoral muscle.  As I massaged my sore pec, I felt a very hard, marble-size lump in my right armpit (yes, where you put deodorant!!!).  With no positive mammogram, no family history of breast cancer, no smoking,  an active lifestyle  and 2 oncologists advising me “to wait and monitor the lump for 6 mos”, I consulted a third specialist. He immediately performed a biopsy/lumpectomy to reveal I had “infiltrating ductile carcinoma–estrogen receptor positive”.   Within weeks, I had a modified radical mastectomy and immediate reconstructive surgery.

Following my surgery, I participated in group counseling and massage therapy weekly. I am convinced through this counseling and my own experience that ……
• you must be your own best advocate by knowing your body and listening to your intuitive gut.
• you need to keep a personal copy of all your medical records, test results, x-rays, etc.
• bring a written list of specific questions/issues and a buddy to any major doctor appt (My husband went with me and this also helped allay some of his fears)…Also, talk to your kids before and while you are undergoing treatment to reassure them that despite any physical changes that you love them and will be ok. Years later,  after my daughter was grown up, she confided that it frightened her that I was so silent and “didn’t talk to her about my cancer”…….
• M,M + M  = Music, massage and meditation (visualize your cancer being gobbled up, flushed down the drain, whatever powerful image you choose)
• Reclaim your body through active participation in something you are passionate about….gardening, art, biking, or with me, it was skiing!!!!   In 1998 in the Paul Mitchell Women’s Ski For the Cure on Ajax Mt, I was shocked to win 2nd place in the Survivors Division.

Needless to say, after 16  cancer-free years, I was flabbergasted and very scared when I got a positive annual mammogram in Oct 1999. A lot has changed in breast cancer treatment, yet, it was not any easier the second time around. This time I was diagnosed with infiltrating ductile carcinoma in my other breast.  Again, I used physical challenge through sports to recuperate from the cancer surgery and treatments, and to regain confidence in my body.  I chose technical mountain climbing and completed a Mt. Climbing Course standing on top of a cliff at Marker 54 on the way to Independence Pass in July 2000.

Cancer was certainly a rough patch in the tapestry of my life;  however, it certainly does not define who I am.   How I chose to handle life’s challenges including cancer,  is what defines me as a thriving, enthusiastic, loving, athletic human.

patknollenbergbwweb

Survivor since May 30, 2007

That was the day my life changed forever.  I had my yearly mammogram that morning, left the hospital intent on going about the rest of my day, and I did, until the phone call that afternoon.
No one ever thinks they or anyone they know is going to get cancer.  You do what the doctors tell you, exercise, eat right, self examine each month, yearly mammogram.  That way, you are safe, right?  Didn’t work that way for me.
You could have blown me over with a feather, me get cancer?  How was I to tell my husband, who had stuck by me through the past 12 years of severe heart disease?  Now this?  Yeah, I felt sorry for him and me, scared and oh so sorry.  My husband and I just held on to each other for dear life, the suppressing darkness of cancer cloaked around us.  Was I going to live?  See my granddaughter graduate, and get married? What of our plans to go to Alaska, and build our dream home?  Had I done all I wanted to do, or was I out of time?  People didn’t survive cancer very often, did they?
The next couple weeks were full of tests, more tests, and then a few more tests.  Then came the day we sat in the surgeon’s office to hear our fate.  I had a very aggressive type of cancer they said, but the good news (there is good news?) was that it was a hormone receptive positive cancer and I was only in stage 2.  The tumor was lodged right on the breast bone, and since I had large, dense breasts, it had gone undetected for years.  A modified radical mastectomy was recommended, and since I had a 40+% chance of it recurring in the right breast sometime down the road, what did I think of having it taken as well?  What did I think?  My husband and I both felt it was best to be aggressive, and not live every day wondering when the other shoe would drop.  So I had both breasts removed along with 14 lymph nodes, as the sentinel node was cancerous.
Sometime after my surgery, when my dear husband was tending to my drains, I got mad.  Good and mad.  I decided than and there that I was NOT going to let cancer define me, I was NOT going to roll over and give up.  We had too much to live for, too much to do.  Alaska may be out this year, but by golly we were going to go in a couple years, right after we finished building our dream home. I got mad, and I stayed mad. As soon as I could heal, I was going to pick up my life and get going again.  I would survive this, we both would.  Yep, it would take some effort and some time, but I was going to kick this and WIN!!
That was 14 months ago.  It wasn’t an easy few months after the surgery, I remember the long nights sitting up in the living room, too afraid to go to sleep, afraid I wouldn’t wake up.  I kept telling myself that I could do this, I had a lot to live for, I was going to survive.  But those night terrors can really get to you.  Even today, you get a cough or a twinge or an ache or pain, and your first thought is cancer.  I self examine every day now, always checking my scars for new bumps.  But honestly, most of the time,  life has never been better.  I wake up each morning and thank God for another great day.  I roll over and see my beloved husband’s face and love and gratitude flood through me.  Flowers smell sweeter, friends are dearer, food tastes so good,  I am closer to my God,  I am healthy and confident and ready to take on even more world.  I am volunteering several hours a week, we square dance, socialize with our friends, and are just about done building our dream home.  I just had to get mad, and decide that I was not going to be defined by my cancer, I was going to kick it to the curb, and I was going to continue living my wonderful life.  Joining and becoming active in my breast cancer support group, the Bosom Buddies, has been one of the smartest things I have done.  Hearing others stories of cancer and struggle and survival has kept me on an even keel, helped me stay positive.  If those other men and women can survive their cancers, how can I not succeed?    Life has never been better, and I have decided that I was fortunate to have gotten cancer, as I am loving life even more than before, I don’t take anything for granted, I am not sweating any of that small stuff anymore, it is a waste of time.  I smile all the time, I am alive, I am well, life is good.  Cancer does not always mean death.  Not any more!!

scottarthurbwweb

Survivor since 2003…

Every day almost a billion cells in your body divide.  If one of those cells doesn’t divide properly you get cancer. Period.

How hard could an appendix surgery be?  I’ve had a hernia repair so it shouldn’t be much different than that, my knee surgery I’m sure was much harder.  My doctor told me to head to the hospital for the surgery; she would call ahead and make all the arrangements.  No big deal, it has hurt for a few days but still tolerable. I called my wife, Nell and told her to stay at work and to come by to see me after the surgery was over. She teased that she was ready to trade me in on a younger model.

The routine blood work was done and I was sitting in the waiting room of the CAT scan drinking the contrast “kool-aid” in preparation for my scan when the receptionist came over and said my doctor wanted to talk to me on the phone.  She said there was a problem with my blood test; I had no white cells and no platelets.  In an almost joking tone I said it sounded like leukemia, she said that that was at the top of the short list.  I’m a paramedic, have been for many years and I felt myself go into work mode; calm but detached, and discussed rationally the potential of my own demise and the planned diagnostic treatments over the phone.  My doctor said not to call Nell, she would.  Then I sat down to finish my “kool-aid”.

Lucky for me I got to spend the next three days in a narcotic haze.  My appendix had abscessed from the leukemia, which turned the 20 minute laparoscopic surgery into a 3 ½ hour marathon with blood transfusions. I was put in isolation due to the chance of infection with no immune system to fight it overnight and flown by helicopter to University Hospital in Denver the next day.  Nell, in the mean time, got to the hospital and was told that I had some type of leukemia and to plan on three months.  “Three months of recuperation, no big deal, it took six months to rehab from the knee surgery.  We can do that easy.”  No, plan on him living only three more months.  There’s a comment to stop a party for yah.

When I became more aware of things three days later I learned that the genetic testing showed I had Acute Promylositic Leukemia type M3 and that if I dared to die on my wife, our seventeen year old daughter and our newly adopted one year old that she would revive me and kill me herself.  An offer I couldn’t refuse!  I had the easy job though; don’t die.  She had it rough taking care of me, my parents, her parents, the kids, our friends, oh and the small aspect of trying to stay employed and keeping us from going bankrupt while I wasn’t working, all while she was commuting 300 miles round trip every week to Denver.  No question, her job was harder.

Chemotherapy is a phenomenal balancing act staged by doctors and nurses of uncanny knowledge and compassion that slowly kills you just enough but not too much, and hopefully does in the cancer cells along the way.  After the first round I hit my first “nadir” or valley and learned what it was like to literally be so weak you can’t move.  But the body recovers from this insult, what an amazing machine we are.  The results of the first round were positive and remission was achieved but as a side effect I developed a peri-rectal abscess.  On paper it seems rather innocuous but in real life it was the most painful, debilitating thing on earth.  Every aspect of your body and life revolves around your butt and you don’t know it until it hurts so bad you can’t even breathe deeply.  Surgery again to drain the abscess and into chemo for the second round.  This time though, my body is used to the poison and I don’t get near as tired.  How can a body take that kind of punishment and keep going?

We are almost four months into this and I still have the easy job and Nell is amazingly keeping up with all of her burdens.  I would have never made it this far without her.  One more round of chemo.  I’ve lost 25 pounds that I didn’t have to loose, hair that I didn’t even know that I had and the reflection in the mirror looks like something from a concentration camp but Nell still makes me feel human and moderately attractive.  My hospital room walls are covered with posters of tropical islands, a paper sun hangs from the ceiling, a string of flamingo lights surrounds the bed and the nurses have taken to spending their breaks in my room due to the atmosphere. Nell has made it a pleasant place to be, not death’s waiting area.  We aren’t fighting this, we are beating it and she is leading the charge and I had better come along for the ride.

I passed by golden fifth year cancer free in 2006 and every day I wake up remembering the epiphany I had shortly after realizing that I was going to survive cancer.  Almost all cancer survivors have one, some involve moving on to new relationships or spending sprees and vacations. Mine did include a long awaited trip to Hawai’i that we couldn’t afford but the main part was the realization that I loved my life just the way it was.  I loved everything about it and wanted to do it all better.  I love my kids more, I love my job and co-workers more, I love where I live more and I especially love my wife more.  And hopefully I am doing a better job of it all as well.

Every day almost a billion cells in your body divide.  If one of those cells doesn’t divide properly you get cancer. Period.  Sometimes something from the outside can make it easier for this to occur but that is still what it boils down to.  Then the fight is on and that fight extends to the whole family.  Everyone is affected by a diagnosis of cancer so everyone needs to be a part of the fight. Don’t feel sorry for them, help them fight.  Help them fight every day.  Help patients realize that they aren’t dead yet and visualize their own healing.  Help spouses keep their lives in order while they try to care for family members.  Help family members know that it’s not anyone’s fault.  No stigma should hang over these people, don’t talk about it in hushed tones.  Reach out and help any way you can, any time you can.

Every day almost a billion cells in your body divide.

betsperformncebwweb

Survivor since 1995…

It started out as a bump on the rim of my anus. I had no itching or swelling (also a sign of hemorrhoids) or bleeding, but I feared it might be cancer. I had it biopsied immediately… I got it early! When I found out that my anal tumor was malignant, I knew I faced the toughest challenge of my life (I was 47)… I couldn’t quite believe I could die from it, but I knew it was possible. I was determined to beat it and not be miserable… so I chose to continue to smoke through both radiation and chemotherapy treatments in spite of finding out that smoking is one of the primary causes of anal cancer!

My radiation was more brutal than my chemo, because it burned “down there”_ I couldn’t wear underwear or take a shower_ I had special cream_ I had diarrhea_ I had such sporadic nausea that I once threw up on a public bus on an otherwise uneventful day. I was doing radiation as an out-patient while simultaneously doing chemo as an in-patient.

I finally quit smoking in 1999.

In 2002 I had surgery to remove a benign tumor in my thyroid (in the neck). Although the tumor they removed was benign, during the surgery they discovered another tumor which they biopsied. That was malignant, so they subsequently removed that as well. I still have some of the thyroid left, but will have to take supplemental drugs, to augment its reduction, for the rest of my life.

I’ve had no recurrence of cancer since,  so I’m fine for now. I’ve gotten used to the idea that it can come back and I just don’t dwell on it; what it does, it does. I have no control, so why worry? Beating cancer is a personal victory and a realization of your mortality… it also makes you aware of how alone you can be and the importance of community. In my case, the medical team who saw me through treatment were my strength and my physical salvation. As horrible as cancer is, I think it has brought us together, a sort of bond that we have. The survivor project is an opportunity for me to have a voice in an otherwise silent battle!

paulhiltsbwweb

Survivor since 1989…

As a thousand thoughts raced through my mind I said to the urologist, “I have a contract to shoot the World Cup races next weekend.  How about we do this after that?”

“How about we do it TOMORROW?” he replied.  It was like a two-by-four hitting me over the head.  All of a sudden, this was very serious business.  All of my hoping that it wasn’t, and all of my rationalizations, evaporated in that brief moment.  I had testicular cancer and there was no easy way out.

It was February 1989 and I had been diagnosed during an annual physical a few days before and the findings were verified by the urologist I had been referred to.  My girlfriend, Marjorie, had urged me to have it checked out.  I agreed to move up the date of the physical at her urging.  If it weren’t for her, I may not have had it checked out at all…until perhaps it was too late.

There had been several cancer diagnoses in my family when I was younger and all of them had the same end result…death.  As a teenager, I had watched my father suffer for seven years with lung cancer, a result of the Camel’s he smoked incessantly, a habit he picked up during his days as a soldier during World War II.

The surgery went as well as could be hoped for and it was recommended that I follow up with radiation therapy. This was before the days of instant internet access to all sorts of useful information so I was going on faith here.  I spent three weeks receiving radiation at St. Mary’s Hospital Oncology Center in Grand Junction.  The people and the facility there were great.  And Marjorie?  Well, she would call me every night, as I sat alone in my hotel room, to check up on me.  I’d be tired and nauseous from the radiation and the phone would ring, and it would be her, and the cold, darkness of the winter’s night would turn to warm, sunshine.

I often wondered what she must have been thinking…Dating a guy who might be dying soon of testicular cancer?! At the end of the winter she arranged a trip to Hawaii for some R and R.  Two years later we were married…in Hawaii.  Several years later I asked her if she’d ever had any reservations about continuing our relationship, knowing that I had cancer, at the time. She replied, “I never doubted for a minute that you would make it.”  And so, I did.  And so did we.

People wonder if I ever ask myself, “Why me?”  Because I had been around cancer victims, I never considered the question because I already knew that anyone was a possible candidate for this club.  Instead I asked, “What about all of those people who had either been diagnosed already, or would be someday.  They all had families, and loved ones, and hopes and dreams for the future.  I knew that the victims were not just those who suffered from the disease directly, but the many people that suffered along with them (and were all too often left behind at the end)…husbands, wives, children, grandchildren and friends.  What about them?

I came to understand that the disease itself is bigger than any one of us individually, but collectively we CAN make a difference for those who still must face this battle.

georgia2tmaxbw

Survivor since 2004…

I was diagnosed with breast cancer in 2004.  I had a lumpectomy hoping to avoid chemo but there were four compromised lymph nodes so I faced both chemo (first) and then radiation. I continued to work almost obsessively as if I could ignore the cancer if I just kept busy enough.  I thought I was pretty successful – in hind sight that idea is laughable.  I wrote this piece a year later in a “memoir” class.  It is a tiny vignette about my recollection of the chemo haze and the inner turmoil I tried so hard to hide and to deny.

“The real world feels like it is just out of reach.  I know it’s there but I’m not part of it.  I’m standing in the airport and I have my carry-on. I see faces I recognize but I can’t figure out who they are.  I think they must be from another life.  Andy is putting my boarding pass in my pocket.  Now he is asking one of those familiar faces to make sure I get on the plane.  I hear him and I’m upset because I can hear the concern in his voice.  But it is as if he is in another room and I am eavesdropping.  He is standing right next to me.  I cannot reassure him.  I haven’t the energy.  I’m not sure my feet are on the ground.  My body is here but I’m not in it.  I’m hovering over the scene.  I’m going to Houston today.

My body functions are fighting to survive.  The drugs have been building upon each other for four months to reach this level of potency.  This is it, the nadir. While they are doing their job they are messing with my brain and ravaging my once happily functioning body.  I have no ability to act without direction.  My eyes are running constantly because I have no lashes.  My nose is leaking too because my nose hairs are gone.  I notice Andy is still hovering.  He usually hates long good-byes and makes excuses to leave.

I’m on the plane – a nice lady showed me to my seat.  I think she is one of those faces I saw in the airport.  Now what?  Oh yes.  Buckle my seat belt.  Now I am woozy.  I need water.  I can’t get water, the stewardesses are busy.  I must get water.  I don’t know what to do.  The lady sitting by the window thinks I’m crying.  Should I ask for her help?  I can’t.  She thinks me a freak.  God, what can I do?  I want to tear off this turban.  It’s heavy and sweaty.  It gives me a headache.  I want to scream “Help Me!” at the top of my lungs.

Oh shit. Someone has this aisle seat. I was hoping we would only have two of us.  She is crying too. That’s all I need.  I’m not in the mood for some hysterical chickie. Her friend is sitting across the aisle holding a flag.  God, look, where did all these cute young boys come from?  They are filing by our row, one by one. They are all in uniform but they look like they should be in high school.  What is going on?  I don’t understand.  Why am I sitting here? Oh my, can it be?  Are they going off to war? No-o-o-o-o.

The cry baby is trying to get my attention.  She wants to comfort me. Now I look and see the pain in her eyes – real pain – not ethereal. The pain jolts me out of my fog. Incredulously, her husband was killed in Iraq yesterday. Suddenly I am present, under-standing that I am needed.  I can relate and respond for the first time in months.  We nurture each other on the ride south – she, to pick up her husband’s body and bring it home to Colorado; me to get daily radiation for two months to kill this sucker cancer.

Wendy runs the length of the tarmac to surround me with a hug.  I follow her to the luggage carousel like a loyal puppy tags along after his master. I catch a glimpse of my reflection as we pass by the security glass barrier.  I have a huge hump on my back I’ve not noticed before.  Wendy tells me it’s the steroids.  I try to stand up straight but the hump doesn’t disappear.

We are watching the luggage on its circular journey.  I am suddenly disoriented and not sure why we are there. Then my bright purple duffle pops through the portal and I remember.  I point and Wendy grabs my bag.  I grapple at my side to be sure I still have my carry-on.  I feel proud that I was able to remember. I feel safe now.  My sister will take care of me.”

I’m now looking forward to my fifth anniversary cancer free and I can’t wait. I am taking an aromatase inhibitor and struggling with “chemo-brain” symptoms which are not subsiding. My identity has always been so tied to my intellect that I am convinced this is God’s way of saying “gotcha” – to remind me about what really matters and what doesn’t.  My life has been permanently altered by this experience, mostly for the better.  I have been forced to learn to be compassionate with myself and to let a little vulnerability seep in.  I hope I’m a kinder gentler person now.

jhemmalinehbwweb

Survivor since 2002_It was May 31, 2002. Emmaline was 8 weeks old. She had been projectile vomiting for two days. Wendy took her to the pediatrician who guessed she was just being fussy. The next morning after a particularly difficult night, Emmaline basically lost consciousness in Wendy’s arms. We raced to our pediatrician and within one hour we were on a plane to Primary Children’s Hospital in Salt Lake City. Emmaline was experiencing inter-cranial hemorrhaging and had massive head pressure.When we arrived in SLC, her neurosurgeon, Dougals Brockmeyer operated immediately and said he was not able to determine exactly what was happening but guessed that she had some type of vascular malformation that had ruptured causing a massive bleed. Our focus turned to helping Emmaline make it through the night. Wendy, being the consummate combination of teacher and mother, prepared for Emmaline’s arrival at ICU by asking staff if they had any children’s books that we could read bedside to our sedated daughter. One of the books she found was Dr. Seuss’ “Horton Hears a Who.”As we read the book to Emmaline that night, we both began crying at the story, the characters and the message. Horton is an elephant who discovers an entire town of Who’s that are so small they live on a dust speck. The Who’s are in serious trouble and they call out for help, but the only one that can hear them is Horton the Elephant (because of his large ears). The book is about Horton’s fight to help the tiny Who’s of Whoville even though no one believes they even exist. His motto is, “A person’s a person no matter how small.” True to his word, “From sun in the summer, and rain when it’s fallish, I’m going to protect them no matter how smallish.”, Horton prevails and all ends well. As you can imagine, Horton became an instant Hultman classic. We read it to her every night until her last chemotherapy treatment some two years later.But wait, there’s more…Emmaline was diagnosed with a grade 4 Glial brain tumor on June 4, 2002, my wife’s 31st birthday. Dr. Carol Bruggers, a nuturing and compassionate pediatric oncologist at Primary Children’s told us chemotherapy and surgery were viable treatment options while radiation was not recommended for children under three. We sought additional opinions from other pathologists and oncology centers such as St. Jude and Duke to help us decide the best course of treatment for our little Wiggleworm. When Emmaline was moved from ICU to the oncology floor, we were amazed to discover a beautiful framed poster in Emmlaine’s room that was a photograph of a young circus girl with her arm around an elephant. Both elephant and girl were facing away from the camera, but the image was so powerful for us because it represented the vision of our future with Emmaline and the coincidence with our Horton theme was surreal. As the day approached when we had to make a decision about where we were going for Emmaline’s treatment, I stared at the print hoping an answer would come to me that would guide us in our decision. The elephant and the girl were facing east. Did that mean we should relocate our family to Tennessee to get treatment at St. Jude? Or maybe it meant we should go to Duke located closer to the east coast? Or should we continue our current course ? I looked closer, the answer had to be there… Then a moment of clarity came to me. I called Wendy over to look at my discovery. Two muddy boots standing in front of the elephant. The elephant was not facing east, the elephant was facing the girl’s father who was standing in front of them but was blocked by the girth of the elephant. The date was June 16, 2002, Father’s Day. It was at that moment that Wendy and I were at peace with our decision to stay in Salt Lake City. When we were discharged from the hospital for the first time later in July, the hospital gave us the poster and it now hangs above our bed. A daily visual reminder of our dream to have Emmaline grow up into the child she is today. We are among the fortunate who are living our dream on a daily basis. We found a stuffed Horton for her that has accompanied her into every MRI, every hospitalization for chemotherapy, and her neurosurgeon even let Horton go with Emmaline into the operating room for her major resection surgery on July 31, 2002! Needless to say Emmaline has received more than a few stuffed animal elephants over the years. Every time we return to SLC for treatments or follow-up MRI’s, we visit the elephant’s at the Utah Zoo. To celebrate her completion of treatment, we took her to San Diego to see the baby elephant at the Wild Animal Park of the San Diego Zoo.

elainegrossmanbwweb

Survivor since 2000_

Cancer. Although my mother succumbed to it at 68, breast cancer never entered my mind. My diagnosis floored me. Ironically, as I sat waiting for over an hour with my dearest friend, in one of Boston’s largest imaging centers, clad in our oversized and unironed “johnnies”, waiting to see the radiologist to tell us everything was fine, I whispered to Joan, “I don’t have time for breast cancer”. And we laughed. Minutes later, my world turned upside down as my beloved radiologist said “it doesn’t look good”. At that point I simply couldn’t, literally, hear him any more. I saw his mouth moving but heard nothing. I asked him to stop and get Joan.I was diagnosed in October, 2000, with both an estrogen receptor positive (ER+) invasive breast tumor and a non-invasive Ductil Carsinoma InSitu tumor. I agonized over the conflicting recommendations I received about chemotherapy and decided that for me, chemo was not a good option. This choice was due, in part, to the fact that my tumors were vulnerable to the elimination of estrogen from my system. I had a lumpectomy and a course of radiation and began tamoxifen. Today, there are much better diagnostic tools available to help breast cancer patients receive well targeted therapy than there were in 2000.I worked part time and recuperated quickly. I was determined not to let breast cancer define me. I wanted to get back to my old routines, my friends, exercise, work. Get back to normal. It worked for me for the short term.A year out, I hit a humbling depression and then got to work on my fear and sadness and decided that I was ready for change. I had a keen sense of the preciousness of time and decided to actualize my dream of living in Colorado. I moved to Aspen for a year. That was five years ago.My breast cancer has certainly made me reprioritize. I have a heightened and present sense of appreciation for love and life. I feel incredibly lucky that I have access to the best of medical care and without it my health and future would not look the same. I am passionate about making it possible for everyone in this area to have access to the quality of medical care that has helped me in my recovery. An annual mammogram saved my life. The diagnostic, surgical, radiation, medical, psychological and acupuncture treatments were all a part of my recovery and it is my vision that this valley will find the will to create and provide this for all who need it – while being supported by our family and community.

suedrinkerbwweb2

Survivor since 2006_

I was addicted to lying out in the sun. As a college student at the University of Denver in the late 1960s, I would organize my class schedule around the best times of the day to get a tan. I could tan so well people sometimes thought I was Native American.In July of 2005, while shooting a photo assignment at the top of Aspen Mountain in Colorado, a lot of mosquitoes and no insect repellent saved my life. The next day, as I was itching the host of bites around my left ankle I saw the mole and I knew immediately it was no good. It was only the size of a small pea, but it was raised and dark with a network of blood vessels surrounding it. An exam with a dermatologist and subsequent tests indicated the mole was cancerous. At the age of 58, I was diagnosed with stage three melanoma. A sentinel node biopsy found the cancer had progressed into my lymphatic tissue. I said silent goodbyes, cried a lot, felt really sorry for myself and generally wallowed in excruciating misery. Then one day I woke up and got to the business of survival. I underwent surgery and four chemotherapy sessions – each 24/7, for five days – with an IV drip running nonstop through my body. My chemo-cocktail consisted of Vinblastine (2.7 mg doses), Cisplatin, Dacarbazine, Aldesleukin and Interferon. Talk about drug warfare! They did everything under the sun to help me get the cancer under control. My body was resilient during the six-month treatment process and I was able to keep up with my photography and my life until the week following the last treatment, which I spent, exclusively, crawling between the couch and the bathroom. It has been over 2 years since my final treatment, and other than the large gaps created by the loss of millions of brain cells, I am back in fighting trim. I have been to the edge of the abyss and I have peered over its side. I have experienced the possibility of my life’s end, and I understand that when that time comes, it is too late to wish for the things I only dreamed about but never did. I want to make a difference in life, and I want to leave behind more than memories. I want to nurture a healthy environment for this wonderful body, and use it, my skills and my creativity to cultivate awareness and appreciation for being given a second chance. This project, Putting a Face on Cancer™, is a way for me, and for all of us survivors, to reach out to encourage and inspire. Cancer is most definitely a wake-up call and a journey of pain and mortal questioning, but these things are the very stuff of life, and survival for any period of time, can become life on a higher and richer level.