When the cancer comes back

BY GUEST BLOGGER | FEBRUARY 3, 2012

As my sister drove me to the hospital on a wintery night after my leukemia returned for the second time, I said over and over, "I'm never going to see my grandchildren. I'm never going to see my grandchildren."

I thought I was at the end of the line. I had already had three bone marrow transplants, each preceded by intensive chemotherapy, when my doctor told me that I had relapsed again.

On the night of Dec. 21, 2008, I had felt a little better after feeling sick for several days. My daughter and I were making cookies. Then I fell to the floor.

After she helped get me to bed, I took my temperature and discovered that I had a fever. I called Dr. Edwin Alyea, my physician at the Dana-Farber Cancer Institute, and he said he was sorry to tell me on the phone, but the pathology report on my latest bone marrow biopsy showed that I had relapsed.

He said he would understand if I didn't want to go through treatment again, but if I wanted to proceed, he had an idea for a new regimen.

I wanted to live. I wanted to see my three children, 16, 19 and 23, continue growing up into the wonderful adults I knew they would be.

I wanted to walk my Labrador retriever, play tennis, run a road race and return to my job as a newspaper reporter.

Dr. Alyea had said to go to the emergency room and get admitted, and then he would come see me and there would be a plan. It turns out I had pneumonia, so they had to treat that before they did anything else.

I was first diagnosed with acute myeloid leukemia in 2003 after feeling extremely tired while running a 10-kilometer road race near my home in South Hadley, Mass. Thinking I was probably anemic, not eating right or training poorly, I went to my internist. He said my blood counts were abnormal and sent me for a bone marrow biopsy. I soon learned that I had AML, a fast-moving cancer of the blood.

The "What, me?" response was pretty strong. I ate well and exercised, I didn't smoke and I was slender. But I had to accept it when, within about a week, I found myself in a bed at Boston's Brigham and Women's Hospital, about 90 miles from home. Under the care of doctors from Dana-Farber, I received three rounds of in-patient chemotherapy, with rest periods in between at home, and then my first bone marrow transplant.

It was an autologous transplant, meaning they used my own new, clean stem cells, removed after two rounds of chemotherapy and then returned to me in a rescue mission after a third and powerful round basically cleared out my bone marrow.

I was in remission, but my first Dana-Farber doctor, Daniel J. DeAngelo, told me that remission is not cure. He said that after two years you break out the Champagne, but only after five years can you use the word cure.

After two, then three-and-a-half years passed and normalcy wrapped its arms around me, I got another shock. The leukemia was back. I learned this just after I played in, and won, a doubles match at a tennis tournament.

"Leukemia is curable," DeAngelo said. "We'll get you back on your feet."

"I am on my feet," I thought to myself as I left his office. And then I burst into tears.

This time I would get an allogenic transplant, with stem cells coming from a donor. After the leukemia cells are killed by chemotherapy and healthy donor cells fill your bone marrow, the donor cells patrol your body to fight off any leukemia that might try to sneak back in.

But after six months, I learned a new term, graft failure: The donor cells had packed up and left, leaving my bone marrow almost empty. The cause was uncertain, and the donor was a good match who agreed to try again. After more chemotherapy, I had transplant No. 3.

Six months later, I had that second relapse.

There were so many things to worry about that a nurse who called me Nervous Nellie told me over and over, "Don't worry, they'll figure it out." And as you will see, the incredible doctors did just that.

I had a new donor and a new chemotherapy regimen consisting of three drugs. One of them, Atgam, is made from rabbit serum, and the nurses called it shake and bake, which is exactly what I did while I received it intravenously.

The transplant, on Jan. 31, 2009, went smoothly, but a few weeks later, I developed a severe blood infection, went into kidney failure and lapsed into a coma. One night, it was touch and go. My ex-husband brought my daughter and told my sons to come quickly and to bring their dark suits. Dr. Alyea met with them and said that there were many things wrong with me, but they would tackle them one by one.

And somehow I struggled to the surface, confused, scared and unable to speak. My legs were swollen like tree trunks, and I needed two nurses to turn me over. The nurses, who ranged from kind and gentle to kind and commanding, helped me pull through.

I regained my voice when a nurse nicknamed Big Red asked me, "What's my name?"

"Lisa," I answered in a grainy whisper.

"Say it loud!" she said.

It took all of my strength to say, "Lisa, Lisa, Lisa!"

But from then on I could speak.

After extended sessions of dialysis, my kidneys returned to normal. I was in bed for more than a month. When I got up, slowly and needing oxygen at first just to sit on the edge of the bed, I had to learn how to walk again. Total time in the hospital: three and a half months.

Recovery has been long and slow. Because you are like a baby with no immune system, during the first year you can't go into crowded places, and when you do go anywhere, you need to wear a mask and gloves. When I got back to walking, I was so wobbly I was like a Gumby doll. One day I fell over backwards, hitting my head on the pavement and earning a trip to the emergency room.

Two years after my transplant, I met my donor, Denise. Donors come from all over the world, but in an example of one degree of separation, Denise lives in New Jersey and is in a book group with one of my friends. Like all donors, she did an incredibly generous thing.

We hugged and grew teary as I thanked her multiple times and she thanked me for giving her a chance to save a life.

Now I am pretty much back to myself, despite graft-versus-host disease, a common complication after transplant in which the "graft" recognizes the "host" as foreign and attacks it. I don't have a bad case, but I do take big handfuls of pills and visit Dana-Farber for frequent check-ups.

I watched my daughter graduate from high school and go to college. I was at my middle son's college graduation and shared my older son's joy when he told me that he gave his wonderful girlfriend an engagement ring.

I rejoined my tennis team and, with my longtime doubles partner, won my first match back, an incredible thrill. I worked back up to running, which took a while, because when I first tried, my feet felt like they were made of lead. The Saturday after Thanksgiving this year, my son and I joined some 3,000 other runners in a scenic six-mile crossrace called the Talking Turkey.

I couldn't go back to work fulltime, but I have been doing freelance writing.

I am left with this question: How do you deal with it when you know that the same bus can hit you twice? You worry that all sorts of things – mainly fatigue - can signal a relapse. I talk to myself. "Maybe you're tired because you just played two hours of tennis." Oh, right.

The passage of time helps. So does hitting the ball on the sweet spot, or doing yoga, or feeling my feet hit the ground when I run, or sitting on the couch watching TV with whichever child is home, or watching the dog lie in the sun at my feet while I write or read. I laugh a lot. Sometimes when I roll over in bed, I flash back to when I couldn't do it myself, and I am so grateful to do that simple thing that I never would have thought about before.

I try to take it one step at a time, appreciating all that I have and looking forward to the good things.

Born and raised in New York, Ronni Gordon lives in South Hadley, Mass., where she raised her three children, Ben, 26; Joe, 22; and Katie, 19. She is a graduate of Vassar College with a master's degree in journalism from Boston University. She spent most of her career in daily journalism as a features writer at the Republican, in Springfield, Mass., and has been published in The New York Times, The Philadelphia Inquirer and elsewhere. She now spends her time freelancing, writing her blog (runnerwrites.blogspot.com) and working on her tennis game.

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The cushion of silence

BY GUEST BLOGGER | JANUARY 17, 2012

Waiting ... more waiting.

The cushion of silence envelops all those waiting in this room marred only by the intrusion of names called, the sound of pens on paper filling out forms, a low buzz from the vending machines. There is solace in the quiet, and as I look around I wonder about all of those who are sharing this room, seeking refuge in months-old magazines and the steady ticking of time; the hushed whisper of communication barely audible. Ronnie is knee deep into a magazine. I check the date. February, 2010. No wonder it looks faded.

What brings the others to this room? My mind wanders. I spend my waiting time trying to guess. For some, there is no question. Others aren't so clear. An older gentleman and his wife. Without the tell-tale bracelet I would have never known which was the patient. They aren't smiling nor are they talking. Is it cancer? Or some other malady? They are called back, and I'll never know. An entire family surrounds a young woman in a wheelchair with a cast that encompasses the length of her leg. Another family enters and breaks the silence. The kids bounce about and there is a fit of coughing. Happily, there is a young mom-to-be with her husband by her side. They are smiling, about to embark on a journey of their own that brings back a flood of joyous memories. Their wait will end and begin with miracles.

The waiting room is difficult for me today. Time is almost standing still. I'm ready to be done with this part of my day and to go home to normal. The normal for my family that is normal to no others and yet so many others. My name is finally called, and I begin to focus on my own reason for being here. Simple enough. Ronnie squeezes my hand. He can sense my mood without sharing a syllable. This has become routine - another normal - in so many ways. We have a balance, and he somehow knows when talking will bring me to tears and silence will provide unspoken comfort. So, true to form, he sits by my side and offers what brings me that peace: a shoulder to lean on, a hand to hold and the reassurance of knowing that he's beside me.

A stent replacement is no longer considered a battle. It's just a part of the journey. The list of what ifs that have forced me to sign on the bottom line barely make us blink. There is much more in the balance than what now seems like the improbable possibilities of a procedure like this. But for some reason I'm overly emotional. Will speaking my fears make them come true? Will whispering my hopes convince the world to share my optimism?

Somewhere, someday I'll discover why my mind doesn't always let me talk in a waiting room, even when I know that just writing the words or speaking them aloud won't change anything. Until then I will be thankful for that squeeze of the hand and be content with the quiet comfort of togetherness and the cushion of silence.

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES, an organization for individuals living with metastatic liver tumors, and an advocate for C3: Colorectal Cancer Coalition.

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The burden and blessing of childhood cancer survivorship

BY GUEST BLOGGER | SEPTEMBER 23, 2011

September is Childhood Cancer Awareness Month. While I am proud to be a part of the childhood cancer community, I sometimes feel that as our children graduate from active treatment back into the real world we can lose sight of the value of the close relationships we have formed along the journey.

This year, one of my objectives for childhood cancer awareness month is to shed light on the true scope of the challenges facing our youngest cancer survivors.

Childhood cancer survivorship is both a burden and a blessing for our children and a lifelong battle no matter how long that life may be.

My son Gabe is a 9-year-old cancer survivor. He was diagnosed at the age of 1 with a soft tissue tumor in his sinus passage. Gabe now struggles with the side effects of chemo, radiation treatment and repeated surgeries. Most acutely, 28 radiation treatments destroyed his pituitary gland and arrested the growth of his jaw on the right side. After falling off the growth charts for a while, he is finally growing with the help of a human growth hormone. Unfortunately, as Gabe's growth speeds up so does the deformity of his face on the right side.

Photo by Red Pepper.

Far from being singular in the late-term effects of cancer treatment, Gabe, in fact, is exposed to an amazing community of friends who live contentedly with amputated limbs, graft-versus-host disease, cognitive delays and/or secondary cancers.

It is vital that our children learn to rely on their cancer community as they are likely to live for many years after active treatment ends. As they grow, the long-term effects of cancer treatment become much more evident and extreme. Some, like Gabe, suffer greatly as their bodies and brains were not fully grown or developed when treatments were administered.

The side effects of childhood cancer are not only physical, there are emotional burdens of survivorship too. Guilt and worry are prevalent among parents of survivors. Our children are encumbered by having been exposed to very adult medical issues at such a young age that they can have difficulty relating to children their own age. Survivors of childhood cancer can be overly anxious and some even suffer from post-traumatic stress disorder (PTSD). Hardly surprising when most of them have to use both hands to count the number of good friends they have lost.

With all the responsibility of carrying the torch for lost friends and dealing with both medical and educational issues it may seem like the blessings of childhood cancer survivorship are hard to find - but they are in abundance.

As parents we are blessed to know that we are not alone in the issues of raising a survivor. We commune in online networks, in chat rooms or in-person support groups at organizations like Gilda's Club.

Our children are blessed to live in a time when there are survivorship clinics with incredible teams of doctors to chart and treat the long-term effects on our children's bodies and minds.

There are opportunities to find kinship and camaraderie at survivorship camps, where, for one week, our heroes lose the burden of being a curiosity and enjoy being around true peers.

As I work to educate families through my non-profit organization, Gabe's My Heart, I communicate a very clear message of optimism. The concept is that by encouraging and empowering families, we enable them to stay composed and focused as they face the diagnosis of childhood cancer together as a family. I strongly believe that we can carry this philosophy forward through to survivorship.

The relationships my family developed along our journey have helped guide us through the worst times in Gabe's treatment. Those same friendships are still the ones I rely on for support in my times of doubt and frustration. By nurturing those friendships I stay close to my cancer community, and I am reminded not to focus on the burdens of survivorship. We received the most amazing blessings from cancer survivorship, and that is Gabe himself. He is here with us still and we will face his late-term effects, whether medical or emotional, together as a family.

Photo by Red Pepper.

Lu Sipos is founder of Gabe's My Heart, a non-profit organization that provides education and support to families and children with cancer through its Chemo Duck program. She lives in Spring Hill, Tenn. with her husband Rob and movie star, cancer survivor, son Gabe.

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Do you need a career coach?

BY GUEST BLOGGER | SEPTEMBER 20, 2011

I am often surprised by how few people really understand how a career coach can help. With the recent recession, more and more people are hiring career coaches because they have lost their jobs or have gone through a life-altering situation such as surviving cancer.

First off, it is important to note that a career coach does not find you a job. This means that he or she does not get on the phone and make calls for you to find job openings and usually cannot influence a hiring manager to interview you. In other words, a career coach does not perform the functions of a recruiter or headhunter.

However, there are so many things that a career coach can do to assist you in your job search or, if need be, change careers.

A coach can help you bolster or rebuild your confidence. As a cancer survivor, you have dealt with one of the most serious challenges of all – your health. All of your energy has been focused on your treatment, constant scans and doctors' visits and getting healthy. Because of this, it's likely that you have paid less attention to your career or professional development. This may cause you to feel insecure about your abilities and the value that you can bring to a new employer or even your existing employer after a leave of absence.

Once your career coach learns about you and your work history and achievements, they can remind you of these accomplishments and help you to articulate the value you bring to an employer on paper and in an interview.

Surviving cancer often changes your life priorities dramatically, including deciding what kind of work you choose to do moving forward. A career coach can help you with your overall career strategy as well as your job search planning. Hiring a professional to help you look at the big picture is very useful because you will be introduced to different perspectives that you may not have thought of on your own. It's also possible that you haven't looked for a job in a long time and many aspects of the job search have changed, such as using LinkedIn and the way you write your resume.

A career coach can advise you on some of the most common issues cancer survivors face, such as how to handle questions about time gaps on your resume as well as potentially illegal or inappropriate questions you may be asked during an interview.

Networking with people is the number one method for uncovering job opportunities, yet it can be an awkward skill to learn. A career coach can teach you the elements of effective networking, including how to meet new people and what to say to them, networking etiquette and different ways to cultivate relationships and follow-through to reap results. Your coach can share their contacts with you as well.

Interviewing for a job can be nerve-wracking, and a skilled career coach can actually conduct a mock interview with you while helping you to come up with great responses to tough interview questions such as, "Tell me about yourself" or "What would your last manager say your biggest weaknesses are?"

As you can see, the list of topics that a career coach can give you advice about is endless. Equally as important is the support you receive and an objective sounding board that you have with a career coach.

Julie Jansen is a career coach in the greater New York City area. In addition to private career coaching services (juliejansen.net), she also serves as a pro bono career coach on cancerandcareers.org. Cancer and Careers is a non-profit resource that offers help balancing work and cancer during or after cancer treatment.

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Celebrating 13 years of unexpected blessings

BY GUEST BLOGGER | SEPTEMBER 16, 2011

It is surreal to be spending a weekend at the Emmys and on the red carpet. It's also incredible to be a guest at Debbie Durkin's ECO Emmy Celebrity Chateau. It's a special event where I am fortunate to be sharing hope and awareness that it is possible to live with advanced cancer. Today is my 13th cancerversary.

I learned on this day 13 years ago that not only did I have colon cancer at the age of 31, but that it had already spread to my liver. My life and the lives of those around me were forever changed.

At times it seems like those words came only yesterday. In reality 4,742 days, 113,808 hours, 13 different chemotherapy agents (mixed, matched and revisited), three clinical trials, radiation (external, internal and targeted), Sir-spheres, vertebroplasty and Cyberknife have crossed my path since then. My children have spent more than half of their lives living in the shadow of cancer. Ronnie and I have shared more years with cancer than we have without. So this anniversary is not just mine. It is theirs as well.

Thirteen years with cancer may sound dismal to some. Our lives, however, are rich. We have discovered strength through vulnerability. We have learned to meet and overcome challenges without flinching. Dreams have come to fruition in the midst of chaos and fear; with a diagnosis that means dying is inevitable and living long unlikely. Time together - that wasn't supposed to be - has been forever etched with cherished milestones and treasured memories.

We carefully watched our children grow; their progress joyfully carved into a doorframe. Childhood friends matured with them and we witnessed their progress, too, and cheered the growth. We marveled at their accomplishments. Winters turned to spring, spring to summer, summer to fall, and then the cycle began again. Wonder filled our days. Moonlit rides, camping trips, picnics and fun brought vitality to the gloom of cancer. Growing pains came and went. Empty nest syndrome took over. Then a three-year-old bundle of love refilled the nest and reminded us once again that life is full of surprises!

Friends and a special angel or two touched our lives, many that without cancer we would have never met. Others have been by our side through thick and thin, reaching out like a beacon in the dark. Help also came from organizations such as Colon Cancer Alliance, Fight Colorectal Cancer, American Cancer Society and LiveSTRONG where I met survivors and discovered the importance of self-advocacy. Without the support and guidance of both, I wouldn't be here today.

Still, living with terminal cancer had lonely moments. It became a personal goal to make sure that others in a situation like mine knew that there were options, support and hope – to know that they weren't alone. This prompted me to start YES! Beat Liver Tumors. What began as a small group of friends has blossomed to close a huge void for thousands that are affected by liver tumors. We inspire, encourage and share hope. We celebrate and laugh together, curse and cry together. We have comforted each other through losses and buoyed one another through victories. Together, we have learned how important it is to embrace each moment as it comes.

Every breath is a blessing. My blessings have been abundant... 13 years of precious time. Today we are celebrating my approximately 136,510,200 unexpected blessings of breath!

Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES, an organization for individuals living with metastatic liver tumors, and an advocate for C3: Colorectal Cancer Coalition.

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First day of school

BY GUEST BLOGGER | AUGUST 29, 2011

September 1, 2009
Morning

It is my oldest son's first day of kindergarten, or really his first hour of kindergarten. My husband and I are taking him to be "oriented" to his classroom in anticipation for the real start tomorrow, sans parents. Given there is no separation involved in this orienting hour, I am aghast when tears begin spilling from my eyes, striping my cheeks. "We have made it to kindergarten," I tell myself. I take a deep breath and wipe my eyes.

My son, Harry, and I walk hand in hand down the corridor as kids and parents bustle about, the enthusiasm and excitement palpable. The 1600's brick school house is quintessential New England and quintessential kindergarten. Its large wooden windows are cracked a little, just enough to waif in the nippy fall air. The classroom walls are laden with 5-year-old art, its shelves lined with bottles of Elmer's glue, small red and white milk cartons and colored plastic trays. Memories of kindergarten 35 years ago come flooding back.

"Mom, are you staying with me today?" Harry asks for the third time of the day.

"Yes, honey, Mommy is not going anywhere." I shudder at the irony of the words.

My husband, having arrived by separate car, spots us coming down the hall and notices my tears. He gives me a nod that suggests he understands my typical mother-letting-go-of-son emotions. What I cannot utter, for fear of dissolving in front of my son, husband and a multitude of composed parents, is that my tears are not about letting go of my son as he enters kindergarten, but of complete joy and gratitude for being able to let him go. I had played this very scene over and over again in my mind, praying every day, all day, that I would be blessed to act it out. Here I am. Alive and cancer-free after my lymphoma diagnosis two years ago. Thank you, God.

Evening

I drive 30 miles north to glorious New Castle Island, NH, to pick up my nephews, Brad and Adam, for some back-to-school shopping. Adam is starting his freshman year of college and Brad his junior year. As they approach the car, I am struck by their stature, each over six feet tall.

"Are you registered for all your classes?" I ask Brad as we drive toward the department store.

"Yup," he replies as he checks his email on his BlackBerry.

"Don't forget to go to Health Services to check on your health care coverage, you have a doctor's appointment next week. We need to make sure you are still covered by your school insurance."

"Yeah, will do," he replies as his thumbs move quickly across his phone's keyboard. As we enter the department store, we separate. I head for the toddlers and boys section and they head to mens. I watch them go, remembering with a familiar ache when my sister and I would shop for them in toddlers and boys.

We leave the department store, exhausted and hungry, with carts overflowing with bedding, towels, and speakers – all later to be housed in dorm rooms.

"I'm starving," says Adam as he surfs on his iPod.

"How about Flatbreads," suggests Brad.

"Sweet," replies Adam, and I steer the car in the direction of the local pizzeria.

"How did Harry like his first day of kindergarten?" Brad asked as the waitress brings the large chicken and artichoke pizza, small white, and large garden salad. Man, can they eat.

We talk about Harry's teacher, the school bus and his new found ability to run faster in his brand new Nikes. I'm careful not to mention my tears.

"Thanks so much, Kit," Brad says as we finish every last bite of food.

"Yeah, Kit, thank you for everything," echoes Adam.

"Of course," I say as I raise my glass to them. It is hard to believe it is exactly five years ago today that my sister died of breast cancer. "Your mom would be so proud of the two of you starting school. And, I know she'd want us to be together tonight. I love you both so much."

For the second time of the day, my eyes well with tears, as her sons' eyes, no longer scanning their Blackberry and iPod, lock mine. My heart swells with love, loss and deep gratitude for being alive to share in their first day of school, too.

Kit E. Haber, PsyD, is a non-Hodgkin lymphoma survivor and a carrier of the BRAC1 gene. She aspires to share her stories of loss and challenge through writing in order to help others move forward through similar experiences. She resides in Saint Augustine, Fla., with her husband and three young sons. She is a licensed clinical psychologist and executive coach and can be reached at kithaber@gmail.com.

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Adoption: A survivor's wait

BY GUEST BLOGGER | JULY 11, 2011

As it has with many young adults, cancer robbed me of my fertility. In back-to-back surgeries, I lost all of my reproductive organs. My doctor's initial attempt to preserve my fertility proved impossible, when early-stage cancer was found in my uterus. Within two weeks of my diagnosis of stage 3 ovarian cancer, it became clear that I would never be able to bear a child.

The question of whether I would lose my fertility was not prolonged, or ever in doubt, after those few brief days between the initial detection of my tumor and the pathology report from my first surgery. It was a done deal almost from the outset. At the time, I was busy focusing on staying alive – there wasn't much psychic space to mourn the children I would never bear. That process of mourning was destined to take much longer, after the rigors of treatment ended, when the physical scars of my illness began to heal and the emotional ones began to assert themselves.

Three years on, the sadness of not being able to have my own children persists in some remote way, but is tempered by the fact that my husband and I are now "waiting parents." Last fall, we connected with a wonderful adoption agency and, rather joyfully, completed all of the requisite paperwork, profiles and trainings. It felt amazing to take clear steps to building our family, to prove that we could still realize our dream of being parents, even after cancer. We had heard many adoption horror stories, but as our own process unfolded, we felt nothing but support and positivity.

We are now about four months into our wait for our child – in adoption terms, this is a mere blink of an eye. Still, because of the specter of cancer, it feels like an eternity, and in my weaker moments, I find myself gripped with a fear that because of my cancer, our child will never come.

Ours is an infant adoption program; the agency works with birth mothers to make adoption plans for their babies. In most instances, the birth mothers "choose" the adoptive family. The choice is based on a birth mother's review of a profile the adoptive parents create, including autobiographies, photos and a letter addressed to the birth mother. The agency provides any additional (and permissible) background information on the adoptive parents to help the birth mother make her decision.

When my husband and I created our profile, it never occurred to us that my cancer wouldn't occupy a central place in the story of what led us to adoption. In my own autobiography, I felt compelled to write at length about my cancer experience, how it changed and strengthened me. We felt that anyone who wanted to understand what we are about as people would need to know about cancer.

When our profile was almost complete, we had an unexpected conversation with our social worker: "You might," she began, somewhat sheepishly, "want to think about taking out the reference to cancer in your Dear Birth Parent letter." The letter was the first page of our profile, and served as a quick introduction; later in the profile, each of our autobiographies contained more detailed information. Our agency told us repeatedly that women often never even read the full autobiographies, that they tended to rely on the photos and opening letter.

We got the picture right away: Put your cancer in the closet. Subtext: Women are not going to want to place their baby with you if they know you've had cancer. Needless to say, my husband and I both bristled, and we got into our one and only uncomfortable conversation with our social worker. In the end, though, we acquiesced. The point is to adopt a child, not to go on a crusade and try and educate every birth mother who reads our profile about the fact that cancer doesn't have to be a death sentence. So we set our convictions aside, and left the cancer reference out of our opening letter.

Still, maybe because of that one difficult conversation, or maybe because I can never fully escape from the reality of how cancer permanently altered my path to parenthood, I carry this fear: I fear that because of my cancer, I will never be a parent. Never mind that our agency's director always makes a point of telling waiting parents: "Everyone in this room will be a parent." She means it, and in my rational mind, I know it's true. Our patience and determination will be rewarded; our child will come to us.

But when I sit in a room filled with other waiting parents, and look around at their eager, anxious faces, I can't help but wonder just how different my wait feels, when it is cancer that has brought me to this place of anticipation and uncertainty.

Emily Beck is a cancer blogger (seeemilyplay.net) and child welfare attorney in Philadelphia. She lives in South Jersey with her husband, basset hound and two cats. When she is not writing about cancer, is she running, biking, praciticing yoga or singing.

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I'm too young for this

BY GUEST BLOGGER | JUNE 29, 2011

I am a young adult cancer survivor.

We are the ones whose doctors are surprised by our diagnoses. We are told, "Don't worry, it's probably nothing." We are told, "You are too young to get cancer."

You are never too young to get cancer.

I thought cancer was an old person's disease. I didn't know anyone my age that had had cancer--until I was diagnosed with breast cancer at age 37.

I knew I needed an outlet for my emotions, so I went to group therapy. But I just couldn't relate to the older people in the group. Their concerns revolved around things like being able to see their grandchildren and if their kids would be able to take care of them.

Young adult cancer survivors are unique. We have issues other survivors don't: Will I ever get used to these scars? How will sex be after cancer? Will I be able to have children? Will I be able to finish high school or college? How do I broach the subject of being a cancer survivor to someone I just started dating?

These aren't exactly the topics the over-50 crowd was discussing in therapy.

I found the I'm Too Young for This! Cancer Foundation (i[2]y) in 2007, the year I was diagnosed, and it's become the best resource I have found for young adult cancer survivors. I was fortunate to attend i[2]y's fourth annual OMG! Cancer Summit for Young Adults in NYC this past April. I had wanted to attend one of their conferences ever since I was diagnosed, and now I had the chance.

I had no idea what to expect. I really wanted to meet the friends I had met online who were attending, and I hoped to gain knowledge from the workshops, but what I got was so much more.

I was in a room filled with my peers. People who were exactly like me. Cancer type was irrelevant. We all had the same hopes, fears and side effect issues associated with cancer. It was amazing to be able to talk with someone and not have to explain why having a port scar bothers you or describe chemobrain when you can't find the right words.

The conference only lasted two days, but made a lasting impression on me. The 2012 OMG! conference is scheduled for Las Vegas. Vegas will never be the same. Here we come... http://omgsummit.org/2012/

Mel Majoros is a breast cancer survivor and host of "The Cancer Warrior" podcast on Empower Radio. You can read her blog "The Cancer Warrior" at thecancerwarrior.blogspot.com.

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Coming out as a cancer survivor

BY GUEST BLOGGER | JUNE 28, 2011

I had cancer. There. I said it.

It's only three words, but telling friends or new acquaintances that I'm a cancer survivor can be difficult. Somehow the topic arises--usually because someone's family member has been affected by some type of cancer. My heart begins to beat wildly, but I can't stop myself from exercising my intense desire to share common experiences. So I say it.

Eyebrows raise, eyes widen. I'm very familiar with this shocked and sometimes panicked expression. And then of course I have to explain.

I explain that when I was only two years old I was diagnosed with leukemia, more specifically acute lymphoblastic leukemia, and that I was enrolled in a randomly selected drug trial. I explain that I almost died, but that I unexpectedly went into remission at age five. I also explain that my sister, who is five years my junior, went through the same thing, only less severe.

"I don't remember anything," I hurriedly say as a sort of reassurance. And it's true. I don't remember the countless injections or the spinal taps or the incessant hospitalizations. I've managed to piece together my experience with cancer thanks to verbal memories from my father and my memories of my sister's experience with the same disease.

Although I regard my status as a cancer survivor like an invisible medal, a unique characteristic of mine, I often fail to realize that so many people tend to associate unfounded stigmas with cancer.

I'll receive responses like, "Are you OK now?" or "Did your hair fall out?" or even "Are you still being treated for it?" Yes, yes and no, for the record.

Sometimes I don't have the opportunity to explain, like at the dentist's office. A new dentist will see what I call my "mini tooth," which was stunted because of the chemotherapy. "I had cancer," I'll awkwardly and almost unintelligibly explain. Usually silence follows, and I'm unsure whether he or she understands.

I don't want to be characterized as "the girl who had cancer" because there are so many other things that define me. I'm a daughter, a sister, a friend, a student, a cook, a writer, a music lover and so many other things. My status as a cancer survivor is a part of me, but it's certainly not the most important part of me.

Yes, I had cancer. Now let's move on.

Rachel Post is a 21-year-old, magazine journalism student at the University of Missouri-Columbia and a proud leukemia survivor.

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Starting a Yoga Practice: Practical advice from a survivor turned yoga teacher

BY GUEST BLOGGER | MAY 3, 2011

Libby Lowe, of Yoga Bear, a non-profit organization that provides yoga to cancer patients and survivors, shares how those new to yoga can begin practicing after a cancer diagnosis. Lowe shares Jean Di Carlo-Wagner's story of beginning yoga and later became an instructor for other cancer patients and survivors.

Jean Di Carlo-Wagner's battles with cancer have been as both a survivor and a caregiver. She began her yoga practice before her own fight with stage 3 colon cancer, and as it evolved to accommodate her recovery, her practice remained a source of healing and inspiration. Today, Jean lives and teaches in San Diego, Calif.

"For me, cancer meant starting over and not knowing how long I had or what to do -- it was like being 19 in a 50-year-old body. I knew more about myself, but needed a lot of prayer and meditation. I tried to go to yoga classes, but it was too humiliating. I had no muscle tone and pulled a hamstring folding forward. I didn't know my new body; and my mind and body were not together. I started practicing at home with a tape but I could only do the first 10 minutes, sometimes only five. So, that's what I did ... over and over again. I needed to work on a scale that I had never had to work on," she says.

She realized she couldn't be the only one struggling. Wanting to help others, Jean got certified as a yoga instructor and began by teaching a group of friends before going on to complete a 200-hour certification as well as special training to work with seniors. Today, she teaches many survivors one on one.

"One of the reasons I became a yoga teacher for cancer survivors was to offer a class where students could learn to assess their bodies and move within the integrity of their bodies. In theory, all yoga classes have this self-reflective component, but their baseline for normal is assumed. In a class designed for cancer survivors, or special populations, the practice of relearning our bodies is encouraged and we find our new normal."

Here, Jean offers advice for people interested in returning to or beginning a yoga practice.

First, talk to your doctor to get a sense of what is OK for you. "Bending over may not feel very good to you if you are on chemotherapy, and twists aren't good for everyone either. If you have a mass in your abdomen, for example, it may not feel very good to twist and compress your internal organs. One of my cancer buddies was a long time hula dancer and yogi, but after her first dose of chemotherapy for breast cancer, bending over made her dizzy and weak. She asked me what she should do and I told her that anything that doesn't feel good means it isn't good for her right now," Jean says.

Finding the Right Class

Once you've got the green light and feel ready to try a class, the first step is finding the right one. One great way to get started is to check out Jean's video for beginning students and search Yoga Bear's map of free or discounted classes across the country. Many are specifically geared toward cancer survivors!

You might also start by asking the social worker at your cancer center if there is a yoga program for survivors affiliated with the hospital. If not, call the American Cancer Society and ask if there is one in the community. If you can't find any special programs for cancer survivors, ask if there are programs for seniors. "Most people don't realize that community college classes for seniors accept younger students after they meet their quota of seniors. Most senior class work on increasing range of motion, balance and strength," says Jean.

Here's Jean's self-assessment list to help you determine where you might want to begin:
• Can you walk half of a mile without getting winded?
• Can you fold forward to touch your knees, shins, or the floor without getting dizzy?
• Can you lie comfortably on your back, your hip and your stomach?
• Can you get down on all fours?
• Can you twist, raise your hands above your head; balance on one foot?

If you answered "no" to three or more questions, don't worry! You can still do yoga. Jean suggests starting with a restorative class or chair yoga.

If you answered no to two or more questions, you might like a gentle beginning class that is no more than an hour.

"The more times you answered yes, the more choices you have. However, during cancer treatment, staying active is encouraged, but metering out your energy is also advisable. There's no point in blowing a whole day's energy on one activity," says Jean.

Once you have a sense of your level, search local studios online; don't be afraid to call and ask specific questions to find the right instructor and class for your level. Many studios offer introductory classes or series. These courses are a great way to get started and connect with a community of other beginners. Because there isn't a national, standardized certification for teaching survivors, ask questions and do your homework before taking any class.

Here are some questions that might be helpful:
• What is the level of students who usually come to your class?
• Are you familiar with cancer treatments?
• Do you have experience working with people with illness or injury?
• Do you give alternatives movements for people with special needs?
• How long have you been practicing, teaching?

Classes with names like Gentle Yoga or Restorative Yoga are usually great for beginners and those with illnesses or injuries.

"Gentle yoga can mean different things to different people, but it's an indication that the class will be slower. Studios that specialize in working with students that are health challenged are out there and growing," says Jean. "My original training at A Gentle Way in La Mesa, Calif. is run by Lanita Varshell, a plus-size woman with fibromyalgia. When you walk into the studio, you can tell from the abundance of blankets, pillows, straps and blocks that the studio has many yoga props and adaptations."

Restorative classes incorporate many props and focus is on breath awareness, deep and total relaxation and allowing gravity and proper propping to ease muscles into position. One the other hand, classes with words like "power," "hot" and "core" in the title will be too intense for beginners--especially those in treatment or recovery.

Setting Your Intention

Above all, yoga should feel good. Ideally, when you walk out of class you will be grateful for the time you dedicated to yourself, feel empowered in your own skin and proud of what your body can do.

When Jean started her post-treatment practice, she realized she had to honor where her body was and not get hung up on what she once was able to do.

"Ask yourself what the main goal for your yoga practice is and be willing to do less and feel more. During cancer, a good day for me was taking a shower, making dinner and possibly feeding the cat. I was very frustrated that my regular routine of exercise was interrupted and I had no idea who to ask or where to go. After abdominal surgery for colon cancer, I was given three weeks to recover and chemotherapy was started. I crawled into bed and stayed there, unless I was throwing up."

Jean advises beginners or those returning to exercise not to get caught up in trying to master specific poses, but to get in touch with the original intention of yoga: deep meditation. When she started her own practice, she admits that the relaxation at the end of class--called savasana--seemed like a waste of time to her. As her practice deepened, that chance to relax and full let go became the central focus.

"Be curious about the journey you are embarking on and allow a sense of humor into your practice. Yoga is for our joy, our gratitude and our love of life. It is a life-affirming activity that brings us back to very basics of being alive: it focuses us on our breath and our heartbeat. As long as you are breathing consciously, you are doing yoga. When you outstretch your hand to help another, you are practicing Karma yoga. When you kiss a beloved and hold their gaze, you are practicing Bhakti yoga. We are never not practicing yoga, we are just not attending to our practice."

The basics:
Many people are nervous walking into their first class. Here are some tips to make it easier.
• Go barefoot and wear clothing that is comfortable but not too loose. Loose clothes can get in the way.
• Bring water and a towel.
• It's okay to take breaks during class or leave to go to the restroom.
• Most studios have mats your can borrow, but check before you go. If you have joint issues, you may want to consider purchasing an extra-thick mat or using two mats.
• Respect your limits. It's okay not to do a pose if it's uncomfortable. An instructor who crosses over from encouraging to pushy isn't the right person for you.
• Yoga is about finding joy in the present. Don't worry about "doing it right." Have fun and celebrate what you can do.

Libby Lowe is social media manager for Yoga Bear.

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