Monthly Archives: February 2011

Christina Applegate and the Sweetness of Having a Child after Cancer

Christina Applegate is on the cover of People Magazine this week next to the headline: “Baby after Breast Cancer.” She shares some candid details that other survivors will relate to, including how self consciousness she felt about her reconstruction from a double mastectomy even in the delivery room and how she faces some tough decisions about removing her ovaries now.

But what survivors who have children will recognize most of all is the unspeakable joy and gratitude Applegate feels when she holds her little girl.
Having a baby is a blessing, but having one after cancer is a downright miracle.

There is so much stacked against young survivors who want to conceive. Some of us have oncologists who failed to emphasize fertility preservation before treatment began. Some of us don’t have the cash, the partner, or stamina needed to take those fertility-saving steps.

Yet the desire to become parents can be so strong that we will stare down even the toughest odds. One survivor I spoke to was so driven to preserve her fertility before she underwent a radical hysterectomy for cervical cancer that she racked up $9,000 in additional medical bills.

“I told my fiancé that he had to give a semen sample tomorrow,” she said. “He looked at all the fees, and was like, ‘We don’t have the money for this. We just bought a house. We have the wedding. We don’t know if you will be out of work.’ I said: ‘I will figure that out. You just go and give them the semen.’ We got seven frozen embryos. I call them my maybe babies.”

After the heartbreak of cancer and the dread of infertility, parenthood becomes that much sweeter. David was certain he and his wife would not be able to have children after his three rounds with testicular cancer. “I have one testicle, so I was batting one handed. And then I didn’t know how the chemo affected sperm count in the remaining one. So when we were able to conceive my daughter naturally, it was absolutely terrific. I felt like a normal human being again. Playing with her is one of the simplest, most beautiful things I do.”

When my oncologist told me chemo would probably make me infertile, it felt like one of our dreams died right there in his office. My husband and I were luckier than most. I was nine-months pregnant when I was diagnosed, and I gave birth to a healthy boy. But both of us had imagined having two children. In our minds, our family included four people. Now cancer was robbing us of that vision, making it seem that someone would be forever missing.

People told us we could adopt, but we wondered what agency would welcome a mother who had an aggressive form of cancer. And so we relished each moment with our son, thinking this was our only chance. We gave away the infant car seat when he grew out of it, we passed along his baby clothes to his cousins, and we watched longingly as our friends moved on to second pregnancies.

But as time passed and my scans came back clean, I started researching the possibility of conceiving again. I tracked down the latest studies that concluded pregnancy after breast cancer did not appear to affect survival rates. I got my hormone levels tested to see if after months of chemo-induced menopause I even could conceive. And I started lobbying my medical team for their approval. When I made it to the two-year mark without a recurrence, they gave me the green light.

Three and a half years after my diagnosis, I delivered my daughter Fiona. I know how lucky I am. I know women who were not able to conceive after chemo. I know women who didn’t live long enough to try.

It is this knowledge that makes having Fiona one of the biggest gifts of my life. Watching her grow, holding her when she cries, seeing her play with her big brother—I know how precious all of these seemingly ordinary moments are.

The first night after she was born, the nurse brought her to my room so I could feed her. She looked so small wrapped up in her blanket, so delicate and beautiful. I brought her soft cheek up to mine and I whispered in her ear, “Thank you for coming.”

I still say that to her five years later.

Emily Cousins

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it’s like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.

No Cure For Cancer :: 2011 Update [DISCUSS]

There is no cure for cancer.

It is a biological disease that impacts each of us uniquely and individually on a genetic and cellular level, the causes of which will continue to remain largely unknown.

Spouses, children and parents of Pharmaceutical CEOs die from cancer every day so no one is “hiding” a magic pill somewhere in Dick Cheney’s underground bunker.

The “cure” for cancer is the same as the “cure” for Diabetes and HIV – a managed disease that you try not to let kill you right away and that you live with for as long as you can. In which case, the “cure” is survivorship because of the millions who do survive, most deal with the consequences of surviving for the rest of their lives and just hope it doesn’t come back.

After all, “cure” is an arbitrary term like “God”. It is not one single thing and it means different things to different people, if anything at all to most. It is an exploited marketing phrase that has been coopted and exploited to convince the masses to open their wallets without objective judgment. Cure sells. Like bald kids on Jennifer Aniston’s lap and dying pets with Sarah Mclachlan. Like anything else, we believe what we want to believe and we can’t see past the questions we don’t understand.

End of story.

Stupid cancer.

Dating after Cancer: Young Survivors May Be Our Own Worst Enemies

Valentine’s Day is approaching, and images of red roses, candlelit dinners, and dark chocolates are blossoming all over television and magazines. It’s easy to get swept up in the mood, except maybe for those young cancer survivors out there who are thinking: what’s so romantic about five-inch surgery scars and a preoccupation with death?

Dating is never easy, but it is especially hard for people who have gone through cancer. Now in addition to avoiding the ordinary social pitfalls, you also have to navigate a new minefield.

When do you first mention the c-word—while you’re flirting at the bar or after your fifth date? If you do hook up, how do you prepare your partner for altered body parts? One survivor of testicular cancer put it bluntly: “How do you tell a girl that you only have one ball?” Worst of all: what if you do share your medical history and the person walks away?

There is no denying it. There are people out there who won’t be able to deal with your cancer experience, and they could break your heart.

But here is another powerful truth: oncology social workers who run dating workshops have noticed that it’s often the cancer survivor who cuts things off first. Many survivors anticipate rejection and push new partners away to protect themselves.

Several young survivors I know have gone that route. Mina, who had just finished law school when she got diagnosed with breast cancer at 27, didn’t date during treatment. A few months out, she met a guy at a bar, and after a few dates, she told him about her cancer experience. He took the news well, she said, but then she added, “I didn’t tell him I had a bilateral mastectomy, because I didn’t want to sound like even more of a freak show.” She never gave him the chance to reject her; she dumped him before they got to the bedroom.

Young adult survivors are even more likely to expect rejection than older survivors. Why? Because we think we are flawed in ways that most of our peers are not. “Every single time that I have been in a room with young cancer survivors–every single time, I can’t think of an exception–I hear two words: damaged goods,” explains the Page Tolbert, an oncology social worker at the Post Treatment Center of Memorial Sloan Kettering. “In middle age, everyone feels like damaged goods. But to be young and feel as if you are not all that you should be or that pieces of you will never be back in place, it is a terrible feeling. You feel vulnerable, because who’s going to want what you have to offer when other people’s package is fuller?”

We experience that sense of damage in insidious ways. Some of us think that a person we are flirting with will lose interest as soon as they find out about the illness. Some feel more self conscious about being naked in front of a new lover. Some feel a tinge of shame, as if cancer reflects a hidden defect. None of these feelings bolster our belief in our desirability. After all, of all various traits that can make a person sexy and attractive to a prospective lover, cancer is not one of them, right?

But according to Tolbert, young survivors make a lot of assumptions about what potential mates will think about our cancer experience, and many of those assumptions turn out to be wrong. She remembers one kind, compassionate young guy who came to her support group on dating. One day he said, “I shouldn’t even be here, because the surgery I had left me impotent, and I know that if you can’t perform the basic sex act, a woman’s not going to want to go out with you.”

Right away the group shouted out a chorus of “Wrong!” They said, “You are the kind of guy we are looking for!” One woman said, “Is it a problem that you can’t have intercourse the normal way? Yeah, you’d have to figure other stuff out, but you are making an assumption about what women want.” Another woman said, “It is number three on my list of things that I look for in a man. It’s behind ‘loves me’ and ‘treats me well.’” Then another replied, “Are you kidding? It’s behind ‘has a sense of humor.”

Cancer does not spell the end of romantic love. It may mean we have to take a few more risks and expose ourselves more, but there is no reason to give up hope or to hold ourselves on the sidelines. After all, survivors know how to handle risk and fear.

I talked to one young guy who was about to move from Los Angeles to London to be with a man he had met after going through a brutal round of treatment for nasal cancer. The relationship was still new, but he had a good feeling about it. “I am doing this because I don’t want to find out the cancer is back and I didn’t do anything. I am risking having my heart broken, but it can’t be worse than dying.”

Emily Cousins

Emily Cousins is a writer and editor who was diagnosed with breast cancer when she was 32 and nine-months pregnant with her first child. She is currently writing a book about what it’s like for young survivors once cancer treatment is over-when the radiation burns have healed and the hair has started to come back, but everything else is completely out of whack. After almost a decade living in New York City, Cousins now resides in Northern Arizona with her husband, son, and the daughter she was lucky to have post chemo.

So I suffered a stroke… Seriously, I had a stroke. At 36 years old. All thanks to stupid cancer. [read on]

So I suffered a stroke… Seriously, I had a stroke. At 36 years old. All thanks to stupid cancer. [read on]

The Short Story

I suffered a mini stroke (TIA) this week as a long-term side effect of the radiation I received for brain cancer in 1996. (Stupid cancer.) I am fine right now, recovering and will be getting a battery of tests at the NYU Stroke Center next week. I have fortunately not lost any cognition or motor coordination. I have a slight speech impediment which should be self correcting and my overall health is just fine. I’m home with my wife and children and laying low for a while.

The Long Story

On January 23rd, I awoke with a mild speech impediment and within two days noticed that symptoms had not improved AND I was having trouble touch typing. On January 26th, I asked my staff if they had noticed a change and they all confirmed my worst fears – something neurological was impacting my daily functionality.

A call to my oncologist resulted in a fast track insurance pre-certification for an MRI on January 30. The preliminary radiology report indicated a new tumor on my brain stem, the pons, specifically. An emergency visit to my neuro-oncologist on Monday the 31st confirmed the structure, however the nature of my symptoms didn’t seem to add up to the suggested prognosis.

It is now the general consensus that I did NOT have a brain stem glioma and that the radiologist who originally read the MRI scans was untrained in neuro-radiology. However, with this relief, I had a different set of challenges to deal with – I didn’t have cancer. I had suffered a stroke, also known as a transient ischemic attack or TIA; a known side-effect of brain radiation.

My body is on the path to healing and recovering. Next week, I am going for a battery of tests at NYU on track to enter their Comprehensive Stroke Care Center for observation, evaluation and further monitoring. Seeing as how my TIA was not caused by traditional risk factors, it remains uncertain what direction the NYU team will recommend but I plan on adding this to the list of issues I get monitored for each year.

This is my fourth brain cancer scare over the past 15 years. In 2003 I began to experience bilateral ocular migraines which blurred my vision and in 2004 I contracted ocular shingles. No tumor. Then in both 2007 and 2009 I went spontaneously deaf in my left and right ears, respectively. (High dose prednisone fully restored my hearing three months later) No tumor. I’ve also had a lung cancer scare which turned out to he pleurisy and a testicular cancer scare which turned out to be a hernia.

I’m still here and nothing is going to stop me from loving my wife and my children and being one of the most passionate cancer advocates in the country. I think the takeaway from this is that when the doctor says “You’re cured. Go home.”, that’s never the end of the story *especially* for pediatric, adolescent and young adults living, through and beyond cancer. I may still be disease free but I don’t feel “cured” as long as I – and millions others – continue to deal with the consequences of treatment. Surviving cancer comes at a price. With all these billions going to fund more and more mostly necessary cancer research, where is the money for cancer survivorship?

Let this be a call to action to start funding survivorship now. Go out there, raise awareness, raise your voice and raise hell. Fund survivorship now because remission is not a cure. Support the I’m Too Young For This! Cancer Foundation and our partner organizations in serving the survivorship needs of our generation.

I hope I am the only one around who can wear a t-shirt that proudly proclaims, “Thank God it was only a stroke.”

I am still here. You are still here.

This is why we fight.

Stupid cancer. Survivors rule.

MZ

–
Matthew Zachary
15-Year Young Adult Survivor
Founder/CEO
I’m Too Young For This! Cancer Foundation

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.

Just When Young Adults Are Feeling Invincible, Cancer Sideswipes Us

The other day I was talking to a friend who is a few months into a rare form of cancer of the appendix. She was second guessing some of her treatment decisions. She wondered about her prognosis, since most of the relevant studies had been done on much older patients. And she desperately wanted to know if she would live to watch her two young daughters grow up. Finally she asked me point blank: “When does the uncertainty end?”

I didn’t have the heart to give her an honest answer: it can a long time.

This is one of the hardest truths about getting cancer. Few of us leave treatment with a certificate proclaiming “You Have Been Cured.” Our doctors rarely know if they have killed all the cancer cells yet. And so we begin the dreadful period of watchful waiting—when no one can tell us if we will survive the cancer or not. We just wait and see.

Having this cloud of uncertainty hanging over your head is difficult at any age, but it is especially hard on young adults.

Cancer enters our lives right when we feel most invincible. We can party all night. We can run marathons. We can power it out at work. We can recover fast when we stumble. And when we look into the future, we can see distant, unbroken horizons.

Cancer shatters that confidence.

First we lose our faith in our bodies. We thought we could count on them to do anything we wanted, but then we find out they betrayed us. One young survivor I spoke to said he felt perfectly healthy when he went for a routine physical before he and his wife started trying to conceive a baby. Three minutes into the exam, his doctor said, “You have a serious problem.” It turned out to be advanced testicular cancer. “You thought you were healthy, but then someone tells you, ‘No, you are very, very sick.’ Every pain, every twitch after that is terrifying.”

Next we lose our faith in the idea that everything will work out just fine. This is a hallmark of being young: we take risks and embrace adventure because we think we will come out ahead every time. Cancer brings no such assurances. Lisa, who was diagnosed with breast cancer at 33, told me, “I have lost the quiet confidence that nothing that bad will happen to me. Or if it does that I will always end up on my feet.”

Finally, we lose our faith in the future. In the first year after being diagnosed with breast cancer, I felt nearsighted when I looked at my life: I could see only a few months ahead, and beyond that everything was blurry. How could I book a major vacation when my next scan could put me back in the hospital? How could I change jobs when should have lots of sick leave stored in the bank? How could I move to a new city when I might need to spend my dying days close to my family?

Two years after treatment ended, my husband and I finally felt bold enough to try to have a second child. Yet even that decision was shaped by uncertainty. I had to ask him, “If the cancer comes back and I die, can you raise two children on your own?” Maybe every parent should ask that question, yet few do unless they have already confronted mortality.

Getting pregnant with my daughter was a turning point for me. Finally, my body was doing what it was supposed to do. I even had newfound admiration for what it could withstand: it weathered surgeries, extra doses of chemo, prolonged menopause, and still I could deliver a baby and nurse her on the side that hadn’t been radiated.

Each month that passed in which I got to watch my daughter grow and my cancer did not come back strengthened my confidence. Each screening that came back negative restored my faith. When my daughter was 18 months, I felt strong enough to move across the country, far from the mother ship of my cancer center—something I never would have dreamed of doing in the immediate aftermath of the diagnosis.

My long-distance vision has returned. Don’t get me wrong—I still panic before my mammograms and I still have tremendous gratitude for every birthday I celebrate. But I don’t feel as uncertain as I used to. I believe my friend who is dealing with appendix cancer will regain her own belief in the future. It will just take time.

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