SeventyK

Patients of a Different Stripe

The SeventyK was chatting with Heidi Adams (Founder of Planet Cancer) and asked for her to contribute to the blog. Coincidently she was featured in an op-ed on Stand Up To Cancer. She wanted to feature this for you all- Thanks Heidi.

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When I was 26 years old, I began having excruciating pain in my left ankle that woke me up, night after night, for eight months. Four doctors, one physical therapist, hundreds of anti-inflammatories, numerous x-rays, whirlpool treatments and ultrasound treatments later, I was diagnosed with Ewing’s sarcoma, a rare type of bone cancer that typically occurs in children.

I was treated on a pediatric treatment protocol in an adult hospital, surrounded by patients my grandparents’ age for the entire 18-odd months of chemotherapy, radiation and recovery. I was lonely, scared, and facing the fight of my life in a place that didn’t seem to expect me and didn’t accommodate my needs in any way.

There was no way to find people who were in the same boat: people who understood what it was like to move back home with my parents after gallivanting around the world for three years. People who didn’t know whether they would ever be able to have a family after this—or if anyone would want to have a family with them. People who, like me, were learning to question doctors, deal with billing departments, and face their own mortality for the first time, while our friends were deciding which happy hour to hit.

Although I like to think that I am unique and special, in many ways my story is a tired repetition of the typical young person with cancer’s story: low clinical suspicion, delayed diagnosis, no peer support, no age-appropriate support services or resources, no fertility information, no clinical trial options, and no clues given as to how this experience could or would impact the rest of my life.

To put it simply, young adults like me with cancer have fallen through the cracks on every front: scientific, emotional, clinical and financial.

In Dr. Jerome Groopman’s new book, How Doctors Think, he discusses the following mantra, frequently relayed in medical school: “When you hear hoofbeats, look for horses, not zebras.” Well, that’s fine. Unless you’re the zebra.

For starters, to identify the zebra you have to acknowledge that it is, in fact, different from a horse. And in many ways the unique aspects of young adulthood are as obvious as those black-and-white stripes: from emotional needs, developmental stages and biologic differences, to age-specific issues related to access and delivery of care.

Even so, until quite recently, young adults were not identified as a distinct demographic group, but were lumped in with their younger and older counterparts. However, when you break them out, young adults are quite the sizeable herd: in fact, there are more than half a million cancer survivors in this age group. Nearly 70,000 patients are diagnosed annually in the U.S. between the ages of 15 and 39, and cancer is our number-one natural cause of death.

Even more startling is the fact that, despite impressive improvements in survival rates for older and younger patients, young adults have not kept pace. In fact, survival rates for 25-35 year olds have remained absolutely flat for the last three decades.

Unfortunately, even faced with these distressing statistics, the medical community as a whole has not yet rallied on our behalf. One of the most gaping omissions is evident in the lack of young adult inclusion in clinical research, where we are the least-represented demographic group.

This is a critical omission when you consider that identifying the biologic differences in young adult cancer can significantly impact treatment strategies and outcomes. And although these unique biologic characteristics are starting to be addressed in some cancers, such as acute lymphoblastic leukemia (ALL) and breast cancer, in too many other cancers it is not known why young adults do not respond to treatment in a similar fashion as our older and/or younger counterparts with the “same” disease.

Of course, effective treatments are only as good as the access and care delivery system that gets them to the patient. And—once again, the refrain—young adults are different. Our medical care can be complicated by the fact that we are the most likely patients to be under- or uninsured, too old for our parents’ or government insurance, yet maybe not in an established career with benefits. We must balance treatment schedules with school or work (in many cases necessary to hang onto insurance), dating, young families and aging parents.

And when you look down the road of a lifetime at what these half a million young survivors will face for the next 50 years? Fertility challenges, fear of recurrence, disclosure issues, altered life goals and priorities, the challenge of insurance hassles and employment issues, and the never-ending need for diligent medical attention and follow-up—all things that set the young adult cancer survivor apart from his or her peers.

But things are looking up in the young adult cancer world, where there is a growing movement to acknowledge the zebras that have been camouflaged for too long. Like me, many young adults have formed organizations to address specific issues of the young adult cancer patient. There has been much progress in recent years as we have, finally, discovered each other and banded together— many under the umbrella of the LIVESTRONG Young Adult Alliance, a coalition whose mission is to improve survival rates and quality of life for young adults with cancer between the ages of 15 and 39.

Initiatives such as SU2C bring hope by breaking out of the traditional research mold, which has, to put it bluntly, failed most young adult cancer patients. “Dream teams” for research could provide and even provoke tremendous opportunity for us at a time when young adults are knocking on the door, demanding our rightful place at the table. As a group, we are standing up to say: Young adults DO get cancer. We DO have unique needs and issues. DO NOT let us fall through the cracks for ONE MORE MINUTE.

Here comes the stampede. Watch out.

Heidi Schultz Adams,13-year survivor of Ewing’s sarcoma and advocacy co-chair of the LIVESTRONG Young Adult Alliance, is the founder and executive director of Planet Cancer, a non-profit dedicated to creating a community of young adults with cancer.

Adolescents begins at 15...

I’m 15 years old and a survivor of cancer. It started when I was 12 years old and in 7th grade. I developed a large goiter on my lower neck. After many tests that came out suspisious I went in to surgery early morning of July 2005. It lasted 6 hours. I had my whole thyroid, 4 lymphoids, and 9 nodules removed all consisting of cancer cells and tumors. I’ll never forget that night when the nurse was wheeling me in to my room and my Mom told me that I did have cancer. I didn’t know how to react or what to say. I was nervous and I didn’t know what was coming up next. I was full of questions but too afraid to ask. I stayed quiet and I didn’t talk about it much at first but I have found out lately that talking and sharing my story can help me deal with everything better and help relate with a lot of other people facing similar things.

After 4 days in the hospital recovering from surgery I started 8th grade and even a new school. A week later I started treatment. The best treatment to cure my kind of cancer was radioactive Iodine. I had to be in isolation for about 5 days straight. No one was allowed in my room and I was not even allowed out!! I got through it and went in to remission for about a year until I got the news in September 2006 that they found hot spots, which are possible cancer cells. I went through treatments a second time. I just recently got back in to remission November 2007 and happier than ever.

Although the treatments have caused many small problems I thank God each and everyday for helping me get rid of the big problem I had to face.  Although it is such a horrible thing it has gave me some of the best experiences I could ever ask for. Every year now I go to different cancer camps such as Boggy Creek, Miracle Camp, and Imus Ranch all in which I have meet many young kids all around the United States.  Each and everyday that I spend at these camps I always learn something new or do something that I never thought I could do. I dont have any friends at my school that have cancer so when I go to cancer camp it shows me that there are so many kids that are haveing to go through the same thing and I feel like im not so alone anymore. Every single one of the people all have something in common and we all look up to each other. All of these experiences are so great and meeting all of these amazing people that lift my spirits really make me stronger and keep me going. Cancer has taught me the life lesson that I think everyone should learn and that is to live life to it’s fullest. It has changed my outlook on life completely, made me stronger and showed me how to handle some of the normal struggles every kid goes through. Deep down I am still just a normal teenager with big dreams of becoming an actress, goals of making straight A’s all through High school, and hopes that I can help anyone that is going through a hard time.

My name is Kasie.

Kasie is an adolescent cancer survivor from Florida.

“the most dangerous weapon is your will”. –Bruce Lee

In December of 2007 I was diagnosed with Breast Cancer. Somehow I always actually thought that my daily dedication at the gym in the morning, the healthy lifestyle, constant positive attitude and attention to the golden rule I kept worked as some magical cloak around my shoulders that would protect me from things just like this. I couldn’t believe it, the words hit me like a ton of bricks.

Within a week I had a biopsy, and later that week I had a double mastectomy, the layer that was once my chest muscle removed, and the first stage of reconstruction done at the same time of the surgery; which meant placing expanders in between my skin and ribcage which would later be breast implants. I’ve suffered some serious wreckage and broken bones in my day (6 broken collarbones to name a few) but I’ve never in my life experienced pain like the following week brought. I can’t speak or think about it without my eyes welling with tears, kind of pain. Talk about getting knocked of your high horse- I’ve just been leveled.

I had to wait almost a month to begin chemotherapy, in that month I was given another strike from the great umpire of the universe, I started having vision fluctuations in my eyes. I went to the ophthalmologist and he informed me that I had tumors pressing on each retina and that the breast cancer was metastasizing. Within days, I had lost vision completely in my left eye, and could only see wavy lines and spots out of my right eye. Now I was sitting, unable to read, watch TV, read books, or drive in a car as it all made me nauseas. It stayed this way for 6 weeks. This was the point when I really started to freak out, for some reason even with the surgery, it wasn’t until this doctor’s visit that it hit me. I have Cancer.

My ophthalmologist called my specialist immediately. I could hear her loudly moan over the telephone in disbelief, the next day I was taken to the Utah Cancer Center and given a PET/CT scan which can identify and pinpoint cancer throughout your body. I found out I had it everywhere except my brain and my feet. At least I could think about how crazy this was, and run out of there!  It had completely taken over my eyes, neck, sternum, ribs, lungs, spine, hips, legs, and my liver was swollen to twice its size. They informed me I was a stage 4 cancer patient, with an extremely aggressive and rare form of  breast cancer; the worst there was with the smallest percentage of living. I was speechless, and anyone who knows me knows I’m never speechless. After this, I went home to write a will and start goodbye letters to my husband and my family. Okay, this was real. Very real, and I was FU#@ING petrified for the first time in my life.

Around that same time I started having sever pain in my left hip. So much so, that I became in need of a cane to walk. In keeping with my sense of humor, I purchased a carbon fiber cane sword. Yes, the handle was a 21/2-foot stainless steel sword that stealthily hid away in the bottom of the cane. So if I got the chance to joust my cancer, I was ready.

Now I am about 3 weeks into this bizarre experience, and so much has happened that it really is making me wonder if I didn’t just get into a car accident on the way home from work and I’m actually in a coma just dreaming all of this. In less than a month I went from powering full throttle through life, work, and sport, to being a blinded cancer patient hobbling around on a cane! How could this be? I just learned switch front side airs skateboarding, I can’t have cancer!

It was hard for me not to get bummed, really bummed, but for some reason I didn’t. In fact, one of the first things I did when I was told the stage of my cancer was buy Rosetta Stone for French, because I thought it would be a nice use of this time to start on a third language. I’m not saying that when no one was around, I didn’t cry, a lot, because I did, but I never really lost it, and I never really got depressed. Actually cancer was like the crowbar that pried my heart open and let me feel the strongest most wonderful connection with my family, my friends, and God. It enabled me to look past everything I was going through and keep my focus on living through this. It was like life was a car I was driving, and I chose only to look  at cancer through the rear view mirror.

Next chapter was chemotherapy, equally a modern marvel of science, and a special delivery straight from the fiery depths of hell. I’d love to pretend it is anything less than that, but it’s not. I was prescribed intensive intravenous chemotherapy, so every 3 weeks I would sit in a lazy boy, stuffed with warm blankets and endless episodes of Lost, while I received 7 hours worth of IV bags. It kills your cells, both healthy and cancerous. It takes you within an inch of your life for about 9 horrible days, and just when you start to feel a little better, it is just in time to go back for your next treatment. Chemo taught me a lot. There’s something about lying in your bed wondering if this unfamiliar feeling your having is you dying that gives a person some time to think and reorganize priorities. It was the ultimate boot camp for survival, patience, faith, and self control. Chemo is bone pain, namely femur pain, nausea, vomiting, fever, cold sweats, muscle cramps and spasms, losing all of your hair, and a constant terrible stomachache. My 5’8” body was coming in at under 110 pounds most of the time, it felt straight extraterrestrial, not Hollywood thin. Every muscle on my entire body, a lifetime of training and sports, is completely gone.  Chemo was hell. I wish there was something I could do to make it so that no person gets cancer because Cancer is complete bullshit. If I could be the sacrificial lamb to stop anyone from having to go through any of this ever again, I would do it.

The action sports community in Salt Lake City is extraordinary and I’m so proud to be a part of it. I had a beautiful display of love, support, and friendship. I wish I could enter the lot of them in some humanitarian contest. They would win, hands down. Almost every day, I had an amazing person visit me and bring with them nothing but selflessness and optimism. My sweet mom flew back and forth all the way from New York for every treatment to help us around the house. My amazing husband could write a book on how to do everything 100% right for your wife when she is sick and really needs you. I was given a Mormon blessing by two dear friends, and even though I’m not technically Mormon, I was welcomed in and placed on every prayer list at every church from here to NY. I had friends that had benefits for me and collectively they donated over $22,000 to cancer research organizations in my name. It was an optimism and faith fest, and I was in the center of it, and it made my cancer seem worth something somehow.

May 12 was the date of my last chemotherapy, and I had equal parts excitement and fear. Going in there that morning I imagine must have been something like what the Spartans felt lining up for battle with the Persians in the war of Thermopylae. Day’s prior I had another PET/CT scan to see what the end result of all of these chemotherapies was. I had only expected the cancer count (through blood tests, it is the measure of the cancer concentration in your body) to continue to go down. But when the doctors told me they couldn’t find one trace of cancer on my last scan, he looked shocked. I was in shock. I still am. I graciously accepted his teary eyed hug and the pat on the back for being the only case like these he has ever seen.  I guess it’s miraculous, and it’s really hard for my brain to digest. I’m still working on it.

Today it has been only one month since my last chemotherapy. Looking back, there’s only one thing I would have done differently. I detected the lump in my breast after a bad slam on a rail snowboarding at Park City in December of 2006. I immediately went to my general doctor, and continued to do so for a year, with the same complaint. I was told during each visit that  I was way to fit, young, and healthy to be concerned. So we just said we’d “watch it”, and “watch it” we did. I watched it turn into the size of a plum, and then turn into a painful and potentially life threatening cancer before anyone took me seriously, because I was young, because I was healthy, and because I was fit. Who chose for 40 to be the magical age where a doctor will order testing for you or your health insurance will even cover it for you? This all should have been prevented. I went early enough for this to be detected.

If I had it to do over I would have forced someone to listen to me, to look at me, to try to help me save my own life before I had to go through everything I did, and come within such  a close step of it. Now all I do is receive two drugs, intravenously every 3 weeks for no less than 5 years. I get the PET/CT scan every 3 months to ensure cancer isn’t coming back, and try to figure out how to live now, stress free, and not let myself worry about getting cancer again.

There is an organization called Seventy K which is petitioning for an adolescent and young adult cancer bill of rights. Wherein the #1 statement it makes and defends is “The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, despite age.” Enough said, things would have been different for me if that were a law.  iI you feel so inclined please sign your name on their petition at www.seventyk.org.

I’ve just found that It’s not easy to share such personal things in print, but If my story can help someone, in some way, either catching cancer early, forcing your doctor to listen to you, or to console you if you are amidst this struggle, than I am happy to help. I want to help. I’ve written about such a serious thing with such a light heart and an air toward humor, because that is the way I got through this whole mess.

Why does it take something like cancer to make us slow down or just STOP for a minute, enjoy the people around us, enjoy ourselves, and prioritize in accordance to what really is important? To realize the real way we need to live and how to live with those around us. How to take care of our bodies and the way we need to care for our minds. Optimism, faith in God and myself, surrounding myself with wonderful people, and keeping the right thoughts in my mind saved me. Imagine what it can do for you, in your life, every single day. 

“Your life is what your thoughts make it” –Marcus Aurelius

Krista Moroge is a young adult cancer survivor from the Pacific Northwest. She is also a Territory Manager for SLKC Sales Agency- Burton, Red, Anon, Analog, Gravis. She is also a volunteer for SeventyK and is currently helping  to grow the organization.

Hospitalized

The weirdness of an individual cancer experience is what gets me.

Perversely, you can enjoy it, as I did, because Hodgkin’s itself can be a relief compared to the effect of what Hodgkin’s caused.

Or your humility can be so disarming that it’s very public and very heroic (Jon Lester is pitching right now for the Red Sox as I type this).

Or you can lash out with 100% weirdness and somehow still have your lashing out make a wee bit of sympathetic sense, as an attendee did at a recent young-adults-with-cancer conference when he blamed every female stranger in the room for “lesions on my penis, caused by the male version of the human papilloma virus, given to me by my ex, and I’d like to know if you get tested regularly for HPV and why wouldn’t you tell your partner if you knew you had it?”

I won’t linger on that. But like that attendee, I can’t get out of the confines of my own story’s weirdness, and I think every cancer experience is so unique, at some point every patient feels isolated.

My cancer story was weird because of the memory loss. My fiancee and family had to deal with my week-plus in the hospital, while I, because of my short-term memory loss, only remember the the very last phrase uttered in the hospital: “Good news, we’re sending you home.” I went from someone with good brains—and a good memory in particular—to someone who needs to use Remember the Milk for nearly everything, not because my memory hasn’t fully come back but because I can’t bring myself to trust my memory anymore, and neither can people around me.

And for some reason, now that I have a clean PET scan (last week, officially) and a clean MRI (today, officially), I’m uptight. The weirdness doesn’t end. I didn’t expect that at all.

I’m impatient at work, as nothing in the office seems quite as important as it did when I felt like a badass, missing only a day or two for each time at chemo. I feel indebted, not just in the thankful way but in the crushing-weight-of-credit-card-debt way, to everyone around me—from my father who moved in with us for months, to the friends that flew into town for an end-of-chemo party, to my H.R. rep, to my doctors—because I have no satisfactory way to repay them.

So as someone who’s officially cancer free, I’m surprised to find out the dominant emotion of early survivorship, in my case, isn’t joy. It’s frustration. A rational frustration maybe: slowly coming to terms with the fact that I wasn’t in control of my fate, that I got blindsided by a freak cancer and saved by my own hand only insofar as I held a job with good health insurance. And slowly coming to terms with my subsequent good fortune, weird in its own right.

Many people wiser than I am, more eloquent than I am, have said that you’re in control not of what happens to you but in how you react to those events. I’m not convinced I have the wherewithal to be a strong advocate for young adults with cancer—despite my profound memory loss early on, there are still things I’m trying to forget, like the sound of an MRI machine or the sting of dacarbazine—which is reason all the more to support those beautiful, strong people who do advocate, whether they’re with SeventyK, I’m Too Young for This, a hospital, a clinic, or a family down the block.

Andrew Whitacre is a 28-year-old cancer survivor from the Boston area. Though he can’t remember doing so, he used his blog to update friends and family during his hospitalization in July 2007.

The Quick Oil and Lube Jobs- A Cancer Princess Fairy Tale- Story from a Multiple Cancer Survivor

     The day I found my lump I was in the shower.  I felt it by accident but in an instant, my stomach fluttered and air escaped me.  I couldn’t breathe.  I knew it was bad.  I was in a hurry because I had a date with my boyfriend, Chad.  Quickly, I dismissed it and even laughed at myself for thinking that I might have breast cancer at the age of 24.  I was just being dramatic. So I put it out of my mind.
     My concerned mother pushed me to finally make an appointment about a month later. My doctor determined it to be a fibroid tumor.  However, because it was the size of a grape, he recommended removal of the lump.
     Two weeks after the lumpectomy, I saw my surgeon for a post-op appointment to get the stitches out and hear the results.  I went alone, on my lunch break.  Why would I be concerned if my surgeon was also convinced it was a benign tumor?  The doctor entered the exam room with his head hung low.  When he finally looked up he softly said, “I am sorry but I have a bit of bad news.  You have breast cancer”.
     My heart sank and tears spilled out.  I was completely devastated.  Two thoughts immediately hit me.  I am going to die and there goes my boyfriend.
Up until that point in my life, my knowledge of cancer was from television; you get sick, throw up, lose your hair, turn a pasty color and become a skeleton until you die.  My boyfriend, also 24, had just started a great sales career.  What guy would want to deal with cancer in a relationship at such a young age?  Mentally, I wrote him off right then and there.  I wouldn’t blame him for backing out of our relationship.
     But Chad didn’t leave me.  As soon as he heard my voice message, he walked off his job and came straight to my house.  He took me by the hand and declared,” Come on, we’re going for a ride”.  As we drove aimlessly around the neighborhood he gave me a lifesaving pep talk that set the tone for my fight against cancer.  “We are going to get through this,” he said.  “We will get you the best doctors and the best treatment.  We are going to beat this and then get on with our lives.”
     This was a vital moment in my life and I will never forget his strength and determination.  Before this conversation, I was definitely the pessimistic, glass half-empty kind of girl.  Chad made it clear that we would overcome this horrific news and take the high road in our attitudes.  No “poor me” syndrome.  He loved me and was promising to support me.  I was overjoyed!
     And so, my journey began.  My pathology report concluded a stage two cancer with one positive lymph node in my armpit.  I chose a lumpectomy with radiation versus a mastectomy.  I was single, after all and dating!  Since it was technically my second lumpectomy, quite a bit of tissue was removed for clean margins. Therefore, the cosmetic results were very distressing.  I was left completely lopsided with a C cup and an A cup.  Chad was sweet and lovingly began to refer to my revised breast as “half pint”.
     Chemotherapy lasted seven months and radiation was two months.  I experienced the gamete of symptoms-nausea, fatigue, hair loss, mouth sores, low blood counts, shortness of breath and insomnia.  My family had a hair-cutting party where Chad shaved my quickly disappearing hair.  Of course, he messed around a bit by creating a mohawk before the final buzz.  Chad and I wore matching baseball caps throughout my treatments.  He constantly left little notes, poems and flowers for me. 
     The best part about having cancer (did I just say that?) was Chad. The morning after my first chemotherapy, Chad came over with a dozen red roses and some funny movies to watch together.  I was in my pajamas and I had been throwing up.  So, needless to say, I wasn’t looking my best.  After I set the roses on my desk, I got back in bed.  Chad’s expression was one of disappointment.  So, I asked him what was wrong.
    “You didn’t look at the flowers close enough.”  He got up, retrieved the flowers and set them, once again, in my lap. Confused, I dramatically smelled them with a murmur of the wondrous fragrance and again commented on how beautiful they were.  What did he want me to say?
He finally pointed to one of the roses.  It was a fake red velvet ring box in the shape of a rose.  I was stunned.  He got down on his knees and proposed. “Yes, yes, yes!” I cried.
     A few lessons were learned during those first few years after my cancer diagnosis. Depression hit me hard, as it does many survivors.  Instead of feeling elated at winning my battle, I was terrified it would come back.  I began to let fear live my life.  Chad turned me around with a blunt statement: “You could also get hit by a bus tomorrow”.  I worked hard mentally at retraining myself to be positive.  After a while I got the hang of it and began to enjoy life again. I stayed focused on planning our beautiful wedding, which occurred on March 9, 1996. 
     I also started volunteering for the American Cancer Society, counseling other newly diagnosed survivors.  I loved it so much I then became involved on the local Unit Council, working my way up to President.  I volunteered for every program and event.  Making a difference in my community became a passion.  I was a patient advocate and I encouraged others to be as well.  There is nothing more rewarding than volunteerism.  It does wonders for one’s health and spirit.  I recommend it to everyone!
     I would love to say my story ends here.  However, four years after my initial diagnosis, a routine mammogram detected some micro calcifications that proved to be a recurrence of breast cancer.  Now 28 years old, I couldn’t believe this was happening again.  I thought I had paid my dues in the “tragic events” part of life.  My emotions were pure anger.  I was furious!
After the initial temper tantrum and sob session, I went into fight mode.  This time I had no choices.  Due to the little breast tissue I had left, a mastectomy was my only option.  On the bright side, this time I would get a newly reconstructed breast at the same time. 
     The procedure, called a TRAM flap, is a major surgery.  A football size portion of my stomach, including muscle, fat, blood vessels and skin were removed and relocated to my chest.  Since it is my own tissue, the cosmetic results were fabulous.  It looks, feels and sags like a real breast!  What a concept.  But that is not the best part.  I got a tummy tuck out of this whole deal.  And believe me, I had some fat to spare! Another perk to having cancer! 
     I learned early on in my cancer battle that humor is needed for survival. Before I went under the knife for my mastectomy, I wrote a message on my breast for the surgeon - “Hasta La Vista, Boobie”.  He and the surgery staff loved it.
     When explaining my reconstruction procedure to a friend, she looked horrified at hearing about all the rearranging that went on with my body parts.  She asked, “So when you get hungry, does your boob growl?”  Another friend asked, “When you do push-ups does that mean you’re doing sit-ups as well?”  I wish.
     The next five years were spent in remission.  I was working full time as an office manager, volunteering for the American Cancer Society and public speaking for many arenas.  In 2001, I accepted a job with the American Cancer Society.  It is extremely satisfying to work for an organization I feel passionate about.
     Unfortunately, in 2003, at the age of 34, I felt a lump in my neck.  Hence, my biggest recurrence- it had spread to the lymph nodes in my neck and cervical spine.  My oncologist informed me the cancer had advanced to stage four now that it was in my bones.  At this stage, I was told; cancer is no longer curable but can be managed. 
     For the next two years, I endured multiple chemotherapies as cancer popped up in various other places in my bones- lumbar spine, hip joints, thighbones, etc.  It became a game: I would have a recurrence, we’d flood my body with chemo which would work for a while, but then cancer would outsmart it again and pop up somewhere else.  I call it a cat and mouse game.  After a couple years, I began to have vision problems so I went to my eye doctor.  I thought I might be headed for prescription glasses.  Instead, I was completely shocked to hear my breast cancer had spread to the back of my eye.  Who has heard of such a thing? 
     In light of this new development, we decided to get a brain MRI as well.  Four lesions were visible and ranged in size.  Unbelievable. It just kept coming!
     I have to say, at this juncture, I felt sheer panic for the first time.  Brain lesions could mean a whole new dimension of symptoms-memory, balance, taste, smell, seizures, stroke, and most importantly death.  I could go at any minute! I was terrified.  Suddenly, the clock was ticking on my life and I still had so much to accomplish.  Chad and I were talking about adopting.  I had started writing a book.  What if I don’t get to tell my family things I have wanted to express but couldn’t for some reason?  All these thoughts consumed me.  I was scared and overwhelmed.
So, before I started whole brain and eye radiation, I sat down and wrote each person in my family a letter in case I suddenly left this world.  They are sealed and stored in my twin sister’s safe if that time ever comes. When I finished, I felt a huge weight lift off me.  “Now I can concentrate on my treatments,” I thought.
     Whole brain radiation was the toughest part of my journey thus far.  Three weeks of frying my brain and eyeballs.  That can’t be good, right?  The worst part were the effects of the steroids, which were required to reduce brain swelling and the chance of seizures.  Steroids caused excitability so I never slept and I ate everything in sight due to the increased appetite effect.  I blew up like a balloon in a few short weeks and gained 20 pounds.  Due to my swelling body, I lost sensation in my legs.  They felt like dead weight and I constantly feared falling.  I would literally have to lift my legs with my arms to put them in the car.  My Mom drove me to work everyday for three months until the feeling went away. 
     Yes, I continued to work full-time.  No matter how tired I was, I loved my job and it gave me purpose.  In my six years with the American Cancer Society, I never missed work unless I had a chemo or radiation appointment. 
     After radiation, my hair was a disaster.  It grew back much thinner with a nice obvious bald strip down the center of my head.  My niece called it a slip-n-slide, my husband called it a landing strip. I cope by covering it up with the Donald Trump comb-over.
     At some point during one of my recurrences (I tend to lose track after so many), I attended a conference in Denver on Metastatic Breast Cancer.  One of the physician specialists talked about hormone receptors.  Most breast cancers are fueled by estrogen.  So, hormone manipulators called aromatase inhibitors can stop the flow of estrogen, which, in turn, can stop the cancer from spreading.  Unfortunately, my pathology reports performed at my initial diagnosis showed my cancer was “hormone negative”.  Therefore, aromatase inhibitor therapy would be pointless.  But, at the conference I learned one new interesting fact- having become the cancer expert by then, I knew everything else!  Ha!  Apparently, if you have been living with metastatic breast cancer for many years (by then I was almost at the 10 year mark) sometimes the hormone receptors can flip.  It was recommended that if there were any palpable masses to biopsy, it might be beneficial to get it rechecked. 
     Well, I took that little piece of information back to my oncologist in Southern California and shared my news.  He shrugged and said he had never heard such a thing.  I told him I wanted one anyway. He agreed, as he always does, to my requests.  He learned a long time ago that I am a very proactive advocate and always did my research.  Luckily, I just happen to have a big mass under my collarbone (luckily?  Okay, poor choice of words).  So, off I went for a biopsy.  Guess what?  I was right.  My receptors had flipped.  I was now hormone positive.  Oh, how tempting it was to say, “I told you so” to my doctor!  ☺  In a crazy way, this was good news.  I now had another tool to manage my cancer.
     For two years, my disease “stabilized” with hormone manipulation therapy.  The only downside is the drugs have put my body into a chemically induced menopausal state.  I never thought I would be experiencing hot flashes and night sweats alongside my Mom.  She thinks it’s cute.  Also, constant bone aches and joint pain make me feel like I have the bones of a 90-year old lady.  Thank goodness I look great on the outside.  ☺
Bone scans show severe degenerative disease. Not good at 37.  But I’ll deal with that when it starts affecting my mobility.
My latest recurrence involved two of my previous brain tumors that decided to light up with activity on a routine scan.  So in July 2007, I underwent Stereotactic Radiosurgery (high dose targeted radiation to specific spots in the brain).  Then, in December 2007 I underwent 2 and ½ weeks of radiation to a mass under my collarbone.  It seems my body will require periodic maintenance for the rest of my life.  As long as these quick oil and lube jobs don’t interfere with the love and laughter in my life, I am fine with it. 
     Exercise and healthy eating are keeping my bone pain to a minimum and my energy level high.  My husband set up a home gym for us and I work out with weights and the spin bike 4 times a week.  We eat healthy and take lots of vitamins.  Hiking is our favorite activity we do together on the weekends.
     Sadly, I am not able to have children due to all the treatments I have endured.  I will be on some form of treatment for the rest of my life.  But, Chad and I are considering adoption.  I have learned that cancer has become less of a deadly disease and more of a chronic one.  I am living proof of this because I am a 14-year survivor with 9 recurrences.
     My biggest lesson?  Hope and hopelessness are both a choice.  So, why not choose hope?  It takes just as much energy to be positive as it does to be negative.  And optimism sure makes the process a little easier.

Heather Warrick
A.k.a. Cancer Princess (with so many recurrences, I though I deserved the title)

The Cost of Living: No Cure for Cancer

Life is about choice.

Remission is not a cure.

Survivorship is all the rage.

Why we fight …

I was 11 years old the first time I sat down at a piano and asked my mother, “Where do you put your fingers?” She showed me a simple five-note scale with both hands and, almost instinctively, I repeated it with precision. The next words out of her mouth were, “You’re getting lessons.” At that point, I knew music would always somehow be a part of my life. It was 1985.

It wasn’t until my third year of college that I realized that a true career in music was possible. My dreams of composing symphonies for film were drawing nearer with each semester. A trip to USC Film School in the spring of 1995 sealed the deal and I knew where my life was going.

Someone once told me that if you want to smash your goals on the rocky shoals of intention, then simply tell God your plans. In the summer of 1995 I was enjoying a paid summer internship for Dean Witter in the World Trade Center when I first began to notice that my left hand was behaving strangely. It wasn’t until I got back to school and begin playing piano again that I noticed a major difference. That fall, my hand slowly lost its dexterity and eventually failed all fine motor coordination tests, rendering this aspiring pianist (and lefty) unable to perform, write or type. A diagnosis of brain cancer in December would make strange sense of the madness and put my dreams on hold.

My invincible life came tumbling down in an instant and two words summed up the experience: isolation and resilience. No fear. Perhaps blind ignorance and deft denial served their purpose but, in the end, how dare this get in the way of my dreams? The pianist who couldn’t play and the college senior who couldn’t graduate was determined to see through this uncertain future.

“When am I going to die?” I asked the doctor.

Or is this death?

I was told that my life in the wake of my cancer diagnosis may not be a bed of roses given the 33 torturous post-operative sessions of high dose craniospinal radiation (5940cg) I was getting. Upon completion of treatment, I lost 110 pounds in less than three months. After throwing up five to 10 times per day during that period, I eroded the lining of my esophageous (antiemitics were of modest help), inducing a permanent physiological and neurological dysphagia (swallow disorder). My saliva glands were decimated (and, to date, only operate at 70 percent) leaving me with a chronic xerostomia (dry mouth). I was left virtually infertile, my testicles and sperm production ceasing to function correctly. My brain, eyes, ears, glands, spine, heart, lungs, liver, kidneys and primary chest organs now all faced a potentially compromised future and, even more scary, a near certain and unpreventable secondary recurrence of cancer within 10 to 20 years.

I may have survived, but only in the loosest sense of the word. I presently live a “better than the alternative” lifestyle, meaning I’d rather be here with these issues than dead and useless to the world. Good came from this.

Three years after treatment, in late 1998, I finally got busy living. One of my happiest days was when I released my first solo piano album — Scribblings — of songs that had been composed in my head for almost three years post-treatment. It took that long for my left hand to regain its strength and dexterity at the keyboard. I may never be the Hollywood composer but I still had my music. A second album followed two years later and a third was composed but never released.

Then in 2003 my fertility returned; however, I will forever experience extremely low counts and below average motility. I must continue to spend $400/year in sperm banking in the event my wife and I require a reproductive specialist for fertility assistance. In 2004, it was an intermittent arrhythmia. In 2005, it was ocular and periodontal shingles along with the chronic onset of irritable bowel syndrome, colitis and gastritis.

In early 2006, I began to experience catastrophic depression and mania. I was diagnosed bi-polar and it was the general consensus of my providers that this was yet another latent influence on brain chemistry from my treatments. In late 2006, I had a testicular cancer scare as a result of a new circulatory imbalance.

On March 18, 2007, within a span of three days, I lost all hearing in my left ear. The diagnosis? “Sudden Sensory-Neural Hearing Loss,” a rare condition that my oncologist confirmed is without a doubt a long-term side effect of my postoperative brain radiation. I can only imagine what may lie ahead. Is this what it means to be a cancer survivor? And yet, more good came from this.

A decade of experience and reflection and dissatisfaction yielded the birth of Steps For Living, a nonprofit support, communications and social advocacy agent for young adults with cancer whose goal was to use music and the arts to create lasting change in how the public relates to cancer. I founded this organization because I believe that this orphaned age group within the cancer continuum stands the most to lose without proper diagnosis, adequate targeted treatment, access to quality care, long-term follow-up programs and social networking support as they have the rest of their lives to reconcile the trauma, move forward and confront its ramifications.

In our small, niche world, we’re a hit. And we’re making a difference by fostering connections, building communities and reversing the feelings of isolation faced by so many. All of the odd medical issues I’ve had for the past 11 years have wreaked havoc on my perception of being ‘cured.’ I am certainly not alone.

And this raises a controversial issue.

What does “curing cancer” mean? I remember being told, “You’re cured. Go home. Get on with your life.” Evidently, that’s not necessarily the end of the story for me or millions of others like me. I do not deny that the physical malignancy is gone. It’s been 11 years and there is still no evidence of biological recurrence. So everything is hunky dory, right? Ummm…no.

I may be “disease free” or “in remission,” but I am certainly not CURED of cancer. Remission cannot be equated with cure. Getting cancer and surviving is not a cure. Remission is not a cure. Being disease-free is not a cure.

It bothers me when I hear of organizations relaying, racing, running, walking, juggling, cycling and promising a cure for cancer. In my opinion, there is no cure for cancer in the same way there is no cure for HIV, diabetes, asthma, allergies or autism. Fifteen years ago we funneled billions into HIV/AIDS research to find a cure and what was the end result? Better medicine. Better technology. Chronic condition. Manageable disease. Great strides. Revolutionary health outcomes. Lasting social change.

No cure. Or, from a certain point of view, the ‘cure’ was in the ‘chronic.’

I am not looking to trivialize this in any way, but in the United States at least, people live with HIV by taking a cocktail of medication every day for the rest of their lives. The virus never gets worse but it never gets better. Now considered a manageable disease, it is the new diabetes. Today we don’t talk about “curing” AIDS, we talk about “ending” AIDs. The semantics make a difference.

In a similar parallel, I have several young adult friends who live with cancer, taking medicines similar to the HIV cocktail where the cancer lies in stasis, never worsening and never retreating. Is this a cure or the result of better research, targeted therapies and molecular medicine? Instead of talking about “curing” cancer, should we be talking about “ending” it? Is the ‘cure’ in the ‘chronic’?

With the dawn of the 21st century, it seems time to get with the times. The notion of cancer’s “cure” has been summarily supplanted with more appropriate and relevant language such as “easing the burden of cancer with a goal of eliminating death and suffering.” This was the new directive of the National Cancer Institute when it refocused its original declarative, “to cure cancer” back in 2003. So, if the focus is now on prevention, early detection, better medical technology and quality of life (e.g., survivorship), where does “cure” fit into this?

It doesn’t.

“Cure” has unfortunately become nothing more than a catchy, exploited, arbitrary and abstract health marketing term that has lost all sense of meaning and purpose — and I am not alone in this sentiment. Perhaps someday down the road a ‘cure’ may take the form of individualized genetic vaccines, which enable our bodies to manage cancer cells more effectively and prevent them from spreading. But we’re still going to get cancer. It just won’t be nearly as life threatening or life altering as it is today.

Here’s more food for thought: Cancer is a naturally occurring biological process that is as old as evolution itself. It is impossible to cure it or end it, just manage and control it. Not to mention the fact that we direct most of our energies treating cancer’s symptoms and not the causes that induce the process by which it overwhelms our autoimmune systems and spreads.

The wildfire-like rise of cancer incidence over the past 20 years has brought shame and disgrace to the Nixon administration’s declared “War on Cancer” from the early 1970s. (How’s that going anyway?) Moreover, the continued defunding of the National Cancer Institute budget by the current administration is another perfunctory slap in the face to the more than 10,000,000 American cancer survivors (and their 30,000,000-plus caregiver network) who should be rioting in the streets in unification to demand answers and action on the part of the 2008 presidential candidates. Where do they stand on the issue? Hillary? Obama? Are you going to publicly promise to replenish the depleted NCI budget for 2009?

Frankly, I’m willing to bet that if Jenna Bush got cervical cancer tomorrow, George W. and his unenlightened cadre of myopic cronies might reconsider what he has done to decimate our hope in the government’s prioritization of this public health epidemic. Yeah, I said it.

I am a survivor because I choose to be. I am proud of what I have been through and hope to encourage others to stand up, embrace their survivorship and shout to the rooftops, “I Am Still Here.” Which is why I hate when people refer to us as “victims.”

Dear Media,

Never use that word again.

Love, Matt

Cancer, at least for me, was not a death sentence. It was a life sentence of vigilant self-advocacy navigating the chronic conditions that continue to befall me in the wake of my simply not dying from cancer 11 years ago. There are 10,000,000 like me living with, through and beyond cancer in the United States, 600,000 of whom are still under 40 and have the rest of their lives to consider the impact of their survivorship long-term. Think about what “cure” means in 2007.

Life is about choice.

Remission is not a cure.

Survivorship is all the rage.

This is why we fight.

This is life + cancer. No cure.

Matthew Zachary is a brain tumor survivor living in Brooklyn, NY. He is currently the Founder/CEO of the I’m Too Young For This Cancer Foundation.

To Contribute to our blog, please email us at contact@seventyk.org

This is unfair

Something is not right with this. It seems like 1/2 the young survivors I meet online get really sick or have passed. I’ve been a “survivor”/”mAss Kicker” for 2 1/2 years now. I find this very disturbing because over the past 30 years there has been no improvement in the survival rates in young adult age group (15-39) while the survival rates in the pediatric and geriatric population have improved. But more importantly this is disturbing to me because this group of young adult patients were the people who I preferred to turn to when I needed support. My friends were there, but it is nice to talk to or email someone that understands what you are up against. For me, most of the brain tumor patients that I could find were older women my mom’s age. Now don’t get me wrong, hanging out with other survivors was great, but finding young people closer to my age that could speak my “language” was something that I missed. My friends and family were great, but it was so nice to meet someone like me that was walking or had walked a similar path.

There are many reasons there has been no improvement in young adult survival rates:

• Lack of research - Young people often are not eligible for studies (too old for pediatric studies or to young for traditional studies) and there are few studies geared towards the 15-39 age group.
• Entry level jobs with poor healthcare - young people are just starting out so the costs of healthcare are not a priority. Education about warning signs could really help.
• Doctors don’t take us seriously because we are not in the typical demographic for cancer, brain tumors, or whatever
• “Superman” complex - Belief that nothing can happen to us until it’s too late. We think we are invincible!

I’m tired of learning about people I’ve met getting sick again. I have made many friends on MySpace and facebook, but the fact remains that this demographic is often ignored. Organizations like I’m Too Young for This or Planet Cancer do a great job providing support for the neglected young adult demographic, but people need to be aware of this fact. Because people generally don’t know about this please spread the word.

-Eric Galvez

Eric Galvez is a brain turmor survivor living in San Diego, California. He is the author of Reversal: When a Therapist Becomes a Patient.

http://www.ericgalvezdpt.com/

To Contribute to our blog, please email us at contact@seventyk.org

It is Official!!!!

Support SeventyK- The Adolescent and Young Adult Bill of Rights

….

check it…

There are approximately 70,000 people aged 15-39 diagnosed with cancer every year. For over two decades there has been little or no improvement in survival for this age group. By signing this bill, you are supporting the Adolescent and Young Adult Cancer Bill of Rights to be established as a standard for care to meet the needs of this underserved population.

support!

www.SeventyK.org