Name:

Judy: My daughter was just 11 months old and still breastfeeding when I was diagnosed. She was the very first thing I thought of, and her well-being was all-consuming throughout treatment. I worried about everything from the immediate concern of weaning her for the mastectomy, to more long term concerns such as whether or not I would be able to be there for her throughout her childhood, and into adulthood.

Parenting with Cancer: What’s the best thing someone did for you or your family to help during cancer?

Judy: Two former colleagues that I hadn’t seen for years heard through the grapevine that I had cancer, and they each contacted me to say they wanted to help. They helped with little things around the house like
washing dishes, one of them rounded up some beautiful clothes for my daughter as she grew, and most significantly, they came over and took care of my little girl when I didn’t have the strength to take care of her by myself. I can’t begin to express how much help that was.

Parenting with Cancer: What’s the best thing someone said to you when you had cancer?

Judy: I received similar advice when I was pregnant and right after the baby was born – that people are going to give you unsolicited advice, and they are going to be very adamant in their opinion that their way is the only right way to deal with this. It’s not. You need to do what’s right for you and your family, and not worry about everyone else’s opinion, no matter how pushy they are.

Parenting with Cancer: What piece of advice would you give a parent who was just diagnosed?

Judy: Same as above. Also, find other parents with cancer and spend as much time with them as you can. I found a group called the Young Survival Coalition and they have been so much help. I credit them with my
sanity. To meet other women balancing parenting with cancer, and even career, and sharing the highs and lows with each other – and to see all those bright and well-adjusted kids they’re raising – makes a big difference. Gilda’s Club is also excellent; their Noogieland helps kids who have cancer in their lives.

They came over and took care of my little girl when I didn’t have the strength to take care of her by myself. I can’t begin to express how much help that was.

Parenting with Cancer: Wig, headscarf or bare-naked head?

Judy: I had a favorite hat I wore most of the time. I had a wig that I hated. I had a number of scarves, but they just didn’t work well for me (and I had one blow off my head on a windy day). I did go out bare headed a
few times, but not often.

Parenting with Cancer: What’s been the hardest part about having cancer/cancer treatments?

Judy: For me, it was fatigue. I’m still having issues with fatigue. And not being able to promise my daughter that I will always be there for her.

Parenting with Cancer: What has helped your daughter through this tough time?

Judy: When she was still crawling, and I was in the worst of treatment, I found that lying down on the floor was the best way to interact with her. She could play and interact with me at her own level, I could still read stories to her, and she could come over and snuggle. We spent a lot of time on the floor together. Now that she’s older, we don’t keep anything from her. She comes with me to most of my doctor and physical therapy appointments, and is quite comfortable interacting with the medical staff. I plan to remain open with her, and answer questions as she brings them up. She’s still pretty young, so I’m sure our coping plans will mature with her.

Parenting with Cancer: What keeps you awake at night?

Judy: Death. Fear of recurrence. This type of cancer has a high rate of recurrence, so every little ache and pain is suspect.

Parenting with Cancer: How do you feel when someone calls you an “inspiration”?

Judy: I don’t feel very inspirational, but I do want to help others with this awful diagnosis. Some of my blog posts are written specifically to help others get through. Some of my most popular blog posts simply outline what a day of chemo and a day of radiation are like. I wrote those because I was so scared before my chemo and radiation started, and a description like that, showing what it’s like, would have eased my mind a great
deal just by eliminating some of the unknown. That doesn’t seem like it rises to the level of inspiration, but if something I wrote can help ease someone’s anxiety or just helps them feel not so alone, well… that would make me happy.

Parenting with Cancer: What’s your favorite place to go for emotional support on your darkest days?

Judy: I go directly to the friends I’ve made at the Young Survival Coalition, or our Facebook group.

We spent a lot of time on the floor together.

Parenting with Cancer: If you could change one thing about your cancer experience (besides the diagnosis), what would it be?

Judy: It is very difficult for me to ask for help. I wish I had asked for help earlier, and more frequently. I still have difficulty asking for help, and since the fatigue is still dogging me, I should do something about that…

In our first post, Joni Rodgers, bestselling author, non-Hodgkin’s lymphoma survivor and mother of two grown children looks back at how she and her husband minimized the melodrama and kept routines like storytime as sacred rituals.

When I was diagnosed with non-Hodgkin’s lymphoma in 1994, my daughter Jerusha was five, my son Ike seven. From downward spiral through treatment to recovery, I was actively sick for about two years. It left a scar on my kids, but it’s part of who they are. And they are fine.

I see now (dang 20/20 hindsight!) I was a lot more traumatized than they were, and my anxiety over their being traumatized made it harder for everyone.

One day during chemo, I scolded at Jerusha, “Say, Missy, you need to understand that the entire world does not revolve around you.”

“I know,” she sighed, “that’s what I hate about it.”

This should have been my cue to step back and realize that my husband Gary and I had actually done a good job of minimizing the impact cancer had on our kids’ lives. For them, stubbed toes, sandwiches and school projects were still the most important thing happening. We were devastated, terrified and bankrupt; they were scared and confused, but their daily lives remained basically intact.

We calmly kept a stable schedule. Bedtime and storytime were sacred rituals, even if I had to muddle through with a barf bucket. When I was seriously out of it, Gary was the Rock of Gibraltar. I’m deeply grateful to have him as my co-survivor and parenting partner. Our kids grew up with a quietly powerful example of “for better or worse,” knowing that love and laughter can survive
the worst circumstances.

Cancer changed my kids’ lives mainly because it changed me.

There was plenty of drama, so we consciously chose to minimize the melodrama, answering questions and sharing feelings with “just the facts, ma’am” candor. Ike was smart enough to understand the gravity of the situation, but not yet able to process the anger and insecurity swirling beneath the surface. For years, I worried that he was carrying those unresolved emotions and frequently tried to draw him out about it.

But recently, I got this profoundly correct kick in the head from Tom Matlock of the Good Men Project: “Think caveman… Don’t project your complex emotional life on your son.”

Ike was angry and insecure as an adolescent, because he was (hello!) an adolescent dude. Anger and insecurity are in the job description! Constantly connecting nonexistent dots, casting the cancer pall over every struggle in his life, I trivialized issues that were important to him but seemed lame compared to cancer.

About to turn 25, Ike now works as a cable TV technician. He goes daily into the homes of lonely, elderly, handicapped and underprivileged customers. Everyone he encounters is pissed off because the cable is on the fritz. Knowing what it is to feel undirected rage about something over which you have no control, Ike is able to handle it when they lash out at him. He listens to their stories with extraordinary compassion, insight and patience. He’s still finding himself, but he’s a good man, preparing to start a family with a good woman he loves and appreciates.

Jerusha, now 23, is about to begin her master’s degree in international conflict resolution with an Arabic culture immersion course in Egypt. Her fearlessness scares the you-know-what out of me. At an acutely impressionable age, my daughter watched a brush with death strip away my fear of living. She watched me take the road less traveled. Now she’s finding her own way, fiercely independent and (for the most part) unafraid.

Cancer changed my kids’ lives mainly because it changed me. Desperate at the thought of leaving them, I spared no intensity while loving them. It wasn’t easy growing up in the embrace of a mother who’d learned the hard way to seize the day. I didn’t do everything right, but I did my best in a bad situation. Then I forgave myself and moved on, counting on their love to redeem
me in the end.

New York Times bestselling author/ghostwriter Joni Rodgers lives in Houston, Texas. You can buy her bestselling memoir “Bald in the Land of Big Hair” on Amazon and Barnes & Noble. Visit Joni online at http://www.jonirodgers.com.

Name:

Parenting with Cancer? What’s the first thing you thought of when you were diagnosed?

Mia: A mass?  What’s a mass?  What does that mean?  I really, honestly, did not understand what my doctor was saying.  I remember just feeling like I wanted to vomit.

PWC: How did you tell the kids you had cancer? If you didn’t tell them, why not?

Mia: Our then-3 year old was very perceptive and bright.  He knew something was up when my parents came over for dinner and we were all sort of like zombies.  We told him that I had a boo-boo on the inside (look for my upcoming children’s book) and that the doctors were going to give me yucky medicine to help the boo boo go away.  That’s as much as he needed to know.  Even now, he asks questions (he’s almost 5), but never grasped the gravity of the situation, thank goodness.

PWC: What’s the best thing someone did for you or your family to help during cancer?

Mia: FOOD!  My mom set up a website on LotsaHelpingHands.com and we were fed for 5 and ½ months straight!  Then again during radiation, the calendar was full in a New York minute. It was so amazing to feel genuine love through nourishment.  Also, some friends sent a cleaning lady.  Swoon. Other friends chipped in and bought me the most amazing chair of my dreams, we call it the Happy Chair.  An incredible organization called For Pete’s Sake Cancer Respite sent us to Disney World!  I could go on and on about all of the wonderful things people did to show they cared, and to cheer me up.  Unlucky to get the cancer but very blessed to know how loved I am.

PWC: What’s the best thing someone said to you when you had cancer?

Mia: Outsider: This sucks!  Doctor: I have good news.

PWC: What piece of advice would you give a parent who was just diagnosed?

Mia: Take a deep breath and make sure your children know you love them. Don’t give them any more information than they need to know on an age appropriate basis, but don’t lie to them – they will make up their own explanations.  Also, ask for help.  Tell people how to help you best.  They will come through and you will feel the love from everywhere.

PWC: Wig, headscarf or bare-naked head?

Mia: Bare-naked head, unless it was too cold.  I used bandannas if going out and I had a super soft Life is Good hat that I loved wearing in the summer.  My son knew that wearing a wig or a scarf meant I was going somewhere.  Except for the first time we played pirates with headscarves, he didn’t like it.  Wigs were too itchy and gave me a headache.

PWC: What’s been the hardest part about having cancer/cancer treatments?

Mia: For me, the hardest part has been how derailed I feel like my life has been.  We had plans and cancer has forced us to adjust.  It has made me realize how little control I have over my life and that rude awakening has been challenging to accept.

PWC: What has helped your kids through this tough time?

Mia: Maintaining some sense of normalcy.  Modeling expression and articulation of feelings.  Giving him egg cartons to stomp on when he’s angry.  Allowing him space and opportunity to reflect on his feelings, and giving him a chance to be a part of my treatment and recovery.  He wanted to be in the action – and he helped me get my nightly injections by cheering for me.

PWC: What keeps you awake at night?

Mia: Will I ever be able to get pregnant again?  Am I brave enough to risk it?  Are my doctors right when they say I’m fine?  Are the scans missing something?  Will I live to see my son’s milestones?  Will we have enough money for me to not work full time and continue to heal and recover?  What am I making for dinner tomorrow night?  Why didn’t I get in bed earlier?  Why is my heart racing?  Oops, I forgot to meditate tonight.

PWC: What’s your favorite place to go for emotional support on your darkest days?

Mia: Well, I am blessed to have a very supportive husband (and parents living close-by) who welcomes me with open arms.  Also, I have finally found an amazing therapist.  I get bi-weekly acupuncture treatments and massages to support my physical health, which often helps my emotional health.  (PS. A tiny crumb of Ativan is essential for getting through the pre-scan/waiting for results days.)

Brandie with her daughter Emma

But then the biopsy came back and suddenly everything was all so real. And it hit me, I’d have to tell my kids I had cancer. I told them almost right away. Again, because they are home with me all day, it’s pretty obvious when something isn’t right. And it didn’t seem fair to not tell them that day. I told my mother first, my husband second (here’s where I insert I tried to tell him first but he was at work, in a meeting, and I couldn’t get a hold of him!), and my kids, third.

“I told them the doctor called and told me I had cancer. I told them I was very sad about it and scared, and it was okay if they were too.”

I called them to my room and told them the doctor called and told me I had cancer. I told them I was very sad about it and scared, and it was okay if they were too. We hugged. We cried. My nine-year-old asked me if I was going to die. I was honest: I told her that the doctors and I were going to do anything we could to prevent that, but that no one knows the future. My oldest daughter asked me if that meant she would get breast cancer, too. Again, I just told her, we’d do what we can to prevent it, but we can’t predict the future. My son? He asked if he could go play the Wii now! Which made us all laugh! Then I told them they could eat chocolate, because I thought chocolate made everything better. Given it was not even lunch time yet, I’m pretty sure they thought the cancer might have been affecting my brain because I’ve never let them eat chocolate before lunch! But we got some candy, and somehow things really did seem to be better.

“Then I told them they could eat chocolate, because I thought chocolate made everything better.”

As another aside, my middle child later told me she really liked how we ate chocolate and that if she ever got cancer, she’d let her kids eat chocolate when she told them!

PWC: What piece of advice would you give a parent who was just diagnosed?

Brandie: First, let others treat you the way you would want to treat them if they were going through this. Think about it, if something happened to your neighbor, you’d want to bring them meals. You’d want to help clean their house. You’d want to drive the kids to baseball practice. You’d want to help out and do things for them. It is, for most of us, one million times harder to allow others to do those things for us. But let them. You do not need to be super(wo)man during this time. People want to help. You will probably need the help. So accept it.

Second, it’s okay to not be happy or brave all the time. Sometimes, as parents, we don’t want our kids to see us cry or upset or unhappy. But it’s really okay for them to see more than just the “good” emotions. They are probably dealing with the same huge mix of emotions, and will be more willing to share them with you if they see that you are feeling the same way.

PWC: What’s the best thing someone did for you or your family to help during cancer?

Brandie: This is hard to pick. We received so much love and support in so many ways. If you twisted my arm and I had to pick, I’d say bringing meals. Someone create a takethemameal.com account and sent it out to everyone. We had meals three times a week for a few months. This was a huge help. We didn’t have to plan meals, cook meals, or shop for things to make meals with. This was such an incredible help.

“Sometimes, as parents, we don’t want our kids to see us cry or upset or unhappy. But it’s really okay for them to see more than just the “good” emotions.”

A few times, people came over and cleaned for us, which was a great help. My aunt came over and did deep cleaning for me – scrubbing baseboards and cabinets and that was lovely.

And all the cards, messages, e-mails, notes were a huge help. Dinner and cleaning provided a huge physical help. But the cards and prayers, were a huge emotional support for me. And it seemed like one would arrive just when I needed it the most.

PWC: What’s the best thing someone said to you when you had cancer?

Brandie: There was no one clear thing that stands out to me. BUT. And this is a huge but, the things that I loved hearing were when people agreed that this whole thing just sucked. And when people gave me room to just be in that moment. I mean, let’s be honest, when I’m crying about some chemo side effect truly, the last thing I want is someone saying in an chipper voice saying “Just stay positive! You’ll get better!” That is not to say I don’t appreciate the sentiment. And I do understand these things come from a place of love. But in those moments, I needed to hear from someone else that yes, in fact, things do suck. And it is hard. And I was blessed to have people around me who did that so well.

PWC: What has helped your kids though this tough time?

I asked my girls and they said, they appreciated that we told them about the cancer and told them details about it. They could really understand what was happening and didn’t need to guess about what was going on (they both said they would have guessed things were a lot worse than they were).

“The things that I loved hearing were when people agreed that this whole thing just sucked.”

They, especially the 12-year-old, also appreciated people who didn’t make a big deal out of it all the time. With all the chaos in the house, I think they appreciated things that felt normal. They also loved that we had so many people who helped get them to activities when I was unable to do it for them.

PWC: Wig, headscarf or bare-naked head?

Brandie: Head scarf and hats all the way. I think I wore my wig twice, for about 10 minutes each time. In the summer, it was just too hot to have a wig on. Head scarves were much kinder. And in the winter (or on cooler days) I loved a good knit hat. Friends picked up pretty quickly I liked scarves and hats and I was given a lot of them too! So it was fun to decide which to wear each day.

PWC: What keeps you awake at night?

Brandie: Fears of recurrence. Fears that my daughters will have to go through the same thing. Frustration at not being back to “normal” yet. Frustration at how slow the healing feels like when I’m in it. Worrying about BPA, soy, plastics, and non-organic meats, dairy products, etc. Are they safe? Aren’t they. Is that bump I’m feeling the cancer coming back (and yes, I’ve been to a doctor about two that I’ve found that are thankfully nothing!). Wondering if I will ever get to reconstruction. Thinking about how I hate having only one breast now. Wondering if my kids will be totally screwed up because so much of the last year has been about me. Have I thanked everyone enough? Will the softball game get rained out? How much in medical bills will we spend this week? Is that headache I’ve had all day really a headache? Or did the cancer spread? Who will go home on next episode of Project Runway? Am I sharing too much about all of this on-line? Am I not sharing enough? What was that lady on the Real Housewives thinking? When was the last time we dusted? Will this chemo-brain/brain fog ever go away? Is there cancer growing right now in my body? How would I know? Will I see my kids as adults? Will I get to hold my grandbabies? Does everyone have clean clothes to wear tomorrow? How do I turn my brain off? Why can’t I fall asleep?

And that, my friends is just a small sampling of what I think about at night as I’m trying to sleep. LOL!

PWC: How do you feel when someone calls you an inspiration?

Brandie: Again, I appreciate the sentiment. And I love the place this is coming from. And yet. I do not feel like an inspiration. I didn’t do anything special. I was unlucky enough to get diagnosed with cancer. And then the doctors did what they do for every cancer patient. I didn’t ask for this. I didn’t willingly accept it. I got through it, mostly kicking and screaming. So I don’t feel that inspirational.

PWC: What else would you like parents with cancer to know about you and your experience?

Brandie: I felt like the world’s worst mother when all of this happened. Okay, some days I still do. We watched a lot of TV over the last year. I haven’t cooked much (and ease of making meals was the number one thing I worried about). My kids couldn’t always have friends over. I felt like I was a failure as a mother.

“I do not feel like an inspiration. I didn’t do anything special. I was unlucky enough to get diagnosed with cancer.”

I also carry an incredible amount of guilt. I’ve turned all of our lives upside down. Now, of course, my husband says I didn’t do all of this, cancer did. But there is guilt inside of me still.

But I’m working on letting it go. The truth is, things happen. Yes, I got cancer. But we did the best we could to get through. It didn’t always look picture-perfect. But, really? Our life wasn’t picture-perfect before. We had bad days before cancer too. We had a whole lot of them during cancer.

“I felt like the world’s worst mother when all of this happened. Okay, some days I still do.”

If I can step back for a few moments, and see the big picture? Watching too much TV for a few months isn’t going to kill them. In fact, they don’t complain about it at all. It’s hard to remember that in the moment. In fact, it’s hard for me to remember that outside of the moment. I’m working on it. But I think we all need to remember to be gentle with ourselves. Even when it seems really hard. We need to treat ourselves like we would our best friend.

You’re riding down the highway with your family, perhaps on the way to a soccer game or Chuck E. Cheese or the Second Grade Extravaganza when — SCREECH! You’re pushed off the road.

And everything stops.

You forget where you were headed because you can’t go there right now.

You worry about your family, stuck with you in this car you were driving which is now smashed into the median.

You wish they hadn’t been in the car with you.

You worry that it was your fault, even though you know it really wasn’t. Even when the authorities tell you it was just something that happens to people, good people like you. Good parents like you.

Suddenly, you stop thinking about picking up the cake for the communion party or whether you remembered the shin guards or what time the parent-teacher conference is tomorrow.

You start wondering if you’ll be around to see your kids graduate from high school.

You remember picking out baby annoucements.

You think about the first time the kindergarten bus rolled up and opened its door.

You chuckle about the time you decided that watching paint dry was, in fact, more interesting that attending a T-ball game.

Then you go about the agonizing and exhausting task of cleaning up the mess and getting back on the road.

And when make it back onto highway with your family, at last heading to the birthday party or the soccer game, you realize the car will never drive the same again.

I met Jennifer Penley when I interviewed her for a forthcoming article in Living with Cancer magazine, where I am a columnist. Diagnosed with Stage IIIb colon cancer in October, Jennifer has written about parenting with cancer at her blog, Jennifer’s Journal. This is one of my favorite posts. -Jen Singer

I am not sure I am ready for normal.

I’m almost at the halfway point now of chemo, and it will feel strange to set about the business of counting down to the end.  It seems not that long ago that I sat in the kitchen, sick from my treatment and sickened by the thought of eleven more rounds still to come.

In one fell swoop my life as I knew it changed.  Soon, I found myself in a protective cocoon of doctors and nurses and tests and ever-vigilant eyes.  If anything else were to go wrong, someone would surely catch it.

Temporarily, momentarily, I feel safe, ensconced behind a high wall and no way, no how is cancer going to get through that wall undetected.  But now I am able to more clearly see that at some point that wall will come down.  At some point I will have to leave the safety of this cocoon.  I don’t want to leave.  I am scared to leave.  I am scared that in a split second, when no one is looking, the cancer will return.  And then what?

I swallow hard against the lump that rises in my throat with every ache, pain or random thought, certain of their prescience as to my future.  I retreat to a shadowy place in my mind and try desperately to conjure the determination and the optimism necessary to see around those dark corners.

And then come the moments when I feel myself staring down the barrel of this disease with the fierce, instinctive wrath only a mother can summon in the face of a threat to her children.  Because in the end, that is what this all comes down to for me:

I need to survive for the sake of my children.

I simply can’t allow this to be the defining moment of their young lives.

“Surviving,” as Marieke said so profoundly, makes it sound like we’re all just hanging on by the skin of our teeth.  And what good is that?  What good is waking to yet another day if you’re not going to take it for the gift that it is?

No, it’s not at all about surviving.  It’s about living.  Really living, like there’s no tomorrow.  Isn’t it said that living well is the best revenge?  That seems to apply so aptly here.  Screw you, Cancer, I’m living, so take that!” And perhaps living is a key to, well, living.

So how do you go about the business of living?  How do you shake that fear of doom that threatens to hold you back?  Maybe you don’t.  Or, rather, maybe you shouldn’t.  Maybe that fear nipping at your heels is what you need to keep moving forward, to keep from slipping into complacency and mere existence.

Maybe that fear is what gives you the courage to take the chances and do the things that alight your soul; maybe after you’ve dodged a metaphorical bullet you come to realize that many of your other inhibitions and self-imposed limitations are just child’s play.  Maybe, just maybe, by hanging on to a little piece of that fear, you find the fortitude to live as if you were dying.
Jennifer Penley is a 39-year old wife and mother of two young boys, ages 5 and 3 ½ . Jennifer was diagnosed with Stage IIIb colon cancer in October, 2011; she is currently undergoing chemotherapy and looking forward to the completion of her treatments this Spring.  Jennifer will be participating in her first American Cancer Society Relay For Life in June, 2012 on her team MOMs Against Cancer, when she will be walking to raise awareness for colon and breast cancer.  Jennifer has been chronicling her physical and emotional experience with cancer on her personal blog, www.jennifers-journal.com and on Facebook at Jennifer’s Journal.

“I haven’t been this happy to get a new driver’s license since I was 17,” I told her, fixing my bangs.

I have bangs, I thought. I’m here.

The woman who had taken my photo stared at her computer screen for a few seconds, smiled and said, “You look so happy.”

I had told her that yes, indeed, I wanted a new photo to replace the one taken four years ago when — it figures — my license was about to expire before my hair had returned after chemotherapy. For four years, I’ve groaned whenever anyone asked to see my license. I looked like I’d just returned from a tour of duty in Kabul.

Nobody has asked me then if I wanted to use my old photo, but I’m not sure I would have, anyhow. I wanted to mark what I looked like, and then cross my fingers that I’d make it to January 2012 when my license would expire and I would need to replace it. Along the way, my driver’s license was met with confused looks and nervous conversation.

“Oh, that’s you with your hair pulled back!” decided a notary public.

A guard at the CNN headquarters in New York scrutinized my license carefully, pausing to look up at me several times. I hadn’t felt that nervous about my license since bar-hopping in college.

“Wow! Short hair!” noted a baggage checker at LaGuardia International Airport.

“I had just finished chemo,” I mumbled, and she reached for my hands.

“My son had leukemia,” she announced, “and he’s okay now.”

“Lymphoma,” I explained, brightening. “Nearly four years in remission.”

“I’m so happy for you!” she announced.

This morning, so was the lady at the DMV. And so is the woman photographed on my new driver’s license. The one with the bangs.

“At least your Mii can have hair now,” my son Nicholas, then 10, explained as he drew hair on a cartoon character he’d named “Mom.”

I was instantly jealous of my Mii.

In the months that followed, Nick added hair to my Mii as my mine grew back in, making it black and curly when my real hair went in that direction for a while, before settling on its current light brown, straight style. I do believe he found all that drawing somehow comforting.

Enter Bald Barbie. Well, enter if Mattel would make one. It seems that two moms, one bald from leukemia and the other from lymphoma treatments, have started a Facebook campaign to urge the doll’s makers to sell a bald Barbie.

More than 120,000 people have “liked” the page, including me, even though I’m pretty sure you can make your own Bald Barbie with two swipes of a sharp razor.

Personally, I don’t care so much if the doll is made as much as it brings attention to cancer and money to cancer causes. But it just might be what girls who’ve lost their hair to cancer need. That, and Miis with a Jennifer Aniston ‘do.

Mattel told CBS News that they don’t accept ideas from outside sources, which makes me wonder what their marketing department has under their Polo shirts and khakis after they came up with the Tattooed Barbie last fall. (Note to self: Ask Mattel for Radiation Tattoo Barbie.)

Anyhow, does your kid’s Barbie really need to go bald? Or is there enough of that around your house these days? As for us, my boys never wanted a Barbie, bald or not.

For the past few months, I’ve been interviewing sources for my new column in Living with Cancer magazine about the social and psychological effects of cancer, a wonderful opportunity from a wonderful magazine. Wonderful, too, for me, because I get to talk to some pretty incredible people.

• I’ve talked to a man who survived head and neck cancer with disfiguring scars that frightened co-workers. He positioned his head so clients wouldn’t fixate on the deep surgically-created indent in his neck muscles.
• I’ve talked to a woman who helped her mother live — not just endure — her final year of life before dying peacefully from lung cancer.
• I’ve talked to a young mom with a rare form of leukemia who isn’t sure she’ll see her kids grow up.
• I spoke to a woman who survived breast cancer even though she wanted to die during chemo.
• I interviewed people who were angry, and others who seemed to have let the past go, some who still have cancer and some who are holding their breath before their next follow-up visit.

Every single one of them made my heart ache with compassion, understanding, admiration and sometimes, fear. They brought it all back for me — everything I went through now four years ago – and yet, they’ve also moved me forward. It’s like wandering around China for years and then suddenly finding someone from your hometown. They get you, and you get them.

Here is some of what I’ve learned along the way. (The rest will be in Living with Cancer magazine next year.)

• Though early detection is important for breast cancer, some types can’t be found by mammogram.
• Head and neck cancer survivors often feel lonely because the treatments can leave their faces or tongues disfigured.
• Some doctors are idiots. (No, wait. I knew that one already.)
• When friends disappear when you have cancer, it’s really about them, not about you.
• One of the biggest keys to survivability isn’t attitude; it’s access to quality healthcare.
• Some women really can rock being bald. (I’m talking to you, Olympic gymnast Shannon Miller.)
• So can quite a few men.
• There’s no such thing as “routine” follow-ups for cancer, because there’s nothing routine about cancer.

What about you? What have you learned from cancer?

Today is my birthday. I am 4.

The date of my actual birth, the one on which my parents decided not to name me Robin after all, because it reminded them of the TV Show Batman, is January 8th, Elvis’s birthday. I’ve always wondered if I were to show my birth certificate to the guards at Graceland, if I’d get a special tour.

But today is a different kind of birthday, the fourth anniversary of the day I finished my cancer treatments. My “cancerversary.”

I’d like to say that the fall leaves appeared brighter and the air crisper on my ride home from the radiation oncology center that day. But I wouldn’t find out until January that I was in remission, when it was finally safe to have PET scan without worry that the radiation stockpiled in my body would skew the results.

On November 9th, 2007, I was in limbo, somewhere between the hell of chemotherapy, hospital visits and agonizing bone pain and the combo platter of relief and fear of recurrence that is remission.

Today, however, is different.

I’ve long made it past the two-year mark when the odds of recurrence for the kind of aggressive non-Hodgkin’s lymphoma I had — the one that had stuck a tumor the size of a softball in my left lung — dropped precipitously.

Earlier this year, I had my last routine PET scan — 14 in all. My oncologist said that the risk of radiation was no longer worth the vigilance. If I feel fine, I probably am fine. We take blood tests for tumor markers just in case, of course. And every bout of bronchitis or nebulous lymphoma-like symptom (fever, chills, itchy skin, fatigue) comes with scrutiny that “normal” patients don’t have to endure. Also, a chest x-ray.

But today, my platter has more relief on it than fear. I have a greater sense of calm, one that I had tried so hard to capture at my “Kiss Cancer Goodbye” fundraiser for the Leukemia & Lymphoma Society two years ago, featuring the Sugarhill Gang:

But I still lived with the Sword of Damocles hanging over my head, fearful that the next PET scan would bring with it bad news. That I would be the star of that heart-wrenching story that begins, “Just when she’d made it into remission….,” and ends in a hospital room.

“If I ever now am having a difficult time dealing with a situation, I just say, ‘What would I do if I were in treatment? If I were re-diagnosed tomorrow, how would I deal with this situation?’ And the answer is usually pretty clear.”

It's your birthday! Go, Jen! Go, Jen!

Everything seems so clear now that today is my birthday. I am 4.

PHOTO CREDITS:
East River Imaging Center
Scott Perkins
Janet Schrot