Everything Changes - The Guide to Young Adult Cancer

By Sarah J. for everythingchangesbook.com

I remember when I was twelve my grandpa was dying of lung cancer and I couldn’t even speak as I sat in his hospital room. The grown-ups kicked me out before I was able to say good-bye.

When I was diagnosed with Hodgkin’s my kids were four and five. I didn’t want them to feel powerless like I did with my grandpa, but I didn’t know how to help them because having cancer made me feel so powerless.

And then I remembered a time before cancer that I was lying on the couch with a pretty bad cold and they made me soup. What they actually made was cold water, lettuce, carrots, turkey, crackers, and bread in a bowl along with a huge mess in the kitchen, but to them it was soup and their faces beamed with the pride of knowing their soup would help me feel better. I started remembering other similar instances of their efforts to help me like bringing me little teacups of water, washing the mirror on the bathroom door with soap, and spending hours scrubbing the fireplace doors with sponges. I thought that maybe with a little direction, there could be something to this.

I let them help whenever they offered without worrying about the mess they might leave behind. When I was too tired or in pain I would ask them for water, my pill bottles, a snack, or anything else I knew they were capable of. I even let them wash my hair after my lymph node biopsy when I couldn’t lift my arm. These were not just chores, they were lessons in kindness and with each task I could see that I was giving them some power over the situation and that they took pride in every little thing they could do to help.

It’s hard to parent with cancer, but it’s easy to give your kids a little power and in doing so, you may feel a little less powerless yourself.

How old are your kids? Have they been behaving differently since your diagnosis? Have they ever offered to help you out? How did it go?

Read more about young adults parenting with cancer in the book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I’ve been really into reading young adult fiction lately – less taxing on my brain after a long day of writing.  I love recalling the mindset of my middle and early high school years when everything around me was either cool or completely embarrassing.  It was a pretty narrow focus, one that cracked and splintered when anything more complex (like a family member’s cancer) arrived on the scene.

When tough times were going on around me, I saw straight though adults chumming up to me with pop-psychology, didactic books, and sentimental moments. All they elicited were eye rolls and a contemptuous desire to run out of the room screaming.  I could handle “learning moments” in the form of an After School Special, but that was about it.

That’s why I adore and highly recommend a slender new book Brushing Mom’s Hair, by Andrea Cheng.  A book of 52 short poem/vignettes about a 14-year-old whose mom has cancer,  there’s no room for the sappy crap adults want kids to learn and feel.  It reads like it was written by a 14-year-old.  She makes computer graphs charting her mom’s fluid intake, is stubborn, bratty, and sweet, obsessed with ballet, first kisses, and her weight.  Supposedly for teens, I think it’s a better match for middle school girls.  (I wasn’t reading Sweet Valley High in high school; I cared most about the insights of teenagers when I was in middle school.)

Nieces, nephews, students you are teaching, your own children, younger siblings.  Lots of young adult cancer patients talk to me about how kids in their lives respond to their cancer. How have kids in your life responded to your cancer?  Eye rolling?  Openness? Any tips for what works, what doesn’t when dealing with cancer and kids?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Tracy’s dos and don’ts for living with breast cancer and parenting a 13-year-old son.

P.S. When I was a sophmore at Columbia University, I baby sat for Francine Pascal’s kids… Guess what - Fancine was actually a 30-something guy!

Patients for A Moment is a blog carnival by/for/about patients.  Every other week Duncan Cross, blogger extraordinare, solicits posts from patient bloggers.  He then features them all together in a singular post on his blog.  Now he is passing the torch.  Twice a month, a new blogger will host Patients for A Moment.  This is my week to host.  Catch the next one on August 12 on Adventures of a Funky Heart.  To learn more or read the Patient for a Moment archives, visit:

Patients for a Moment #4

In his post The Albatross, Duncan Cross writes profoundly about my favorite illness subject: s-e-x.

I used to take pride in being an overachiever, now I balk at it.  Read Baldylocks’s Exceeding Hyperdrive on The Adventures of Baldylocks: hula hoop video included.

Did you know more patients die each year from medical errors than from breast cancer?  Patient safety receives far too little attention, so I was excited that Florence dot Com wrote about it in her post I’m So Very Sorry.

On Brass and Ivory, Lisa Emrich asks an in-your-face, utterly informed, and armed with statistics kinda question about prescription drug coverage to a panel of doctors at the National Press Club, in Not Your Typical Patient. Lisa is my hero.

Novel Patient takes a flipcam to record her second infusion in Rituxan Take Two, where we watch a mundane hospital routine become personal.

Aviva from Sick Momma has been asked 100 times by her 4-year-old daughter “Mommy, when are you going to die?”  Here’s her answer in From The Mouths of Babes.

Leslie, from Getting Closer to Myself, fuses sociological perspectives on health and illness with her most recent flare of lupus, in What Does It Mean To Live In  A ‘Remission Society’?

Laurie Edwards at A Chronic Dose writes about blogging in the illness community and how it has made her a less judgemental person in On Listening and Judging.

Kate at After Cancer, Now What writes about Scars As Fashion Statements.

Cathy Bueti writes about olfactory senses and PTSD in What’s That Smell?? on her blog In My Life.

If you’re ever terrified of getting an endoscopy, Kim from Emergiblog will put your mind at ease with her post I Went, They Scoped, Now Starbucks is History.

I’d love to know which posts you’ve read and what struck you the most.  Leave a comment below.

The Everything Changes blog is a companion to my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Both book and blog are resources for anyone living with chronic illness.  All are welcome!

I don’t have kids but got to peer in the lives of parents with cancer when I was doing interviews for my book Everything Changes. I believe that cancer is a totally different disease for people who are parents and think there should be a new staging system to reflect this monumental difference: Cancer Stages I - IV NK (no kids) and Stages I - IV P (parent).

Jen Singer is the creator of MommaSaid.net, the moderator of the Parenting with Cancer boards at Planet Cancer, and the author of four parenting books including Stop Second Guessing Yourself—The Toddler Years (HCI 2009).  I asked her to write a guest post about life during treatment as a mom of three.  Take it away Jen:

“When I found my son’s swim goggles in our mailbox, I took it as a sign that I was no longer in charge. How could I be? That summer, I was undergoing chemotherapy for stage 3 non Hodgkin’s lymphoma (and, oh yeah, my house was undergoing renovations…). So I didn’t have the energy to drive my kids to swim team practice. In fact, I missed most of their swim meets and much of June, which I spent in the hospital, sharing a room with an 84 year-old leukemia patient, who was dying. I missed being the kind of hands-on mom I’d always been. But most of all, I missed my kids.

I learned a lot of things that summer, like how to tie a headscarf and what time The Daily Show repeats come on during the day. But most of all, I learned how to let go. It was the best thing for me, and for my kids.

While some nice folks took it upon themselves to turn my mailbox into a Lost and Found, my neighbor, Susan, organized the community to cook for us three times a week. Another neighbor, Kim, set up a schedule for friends to carpool my kids to various activities and playdates, which she arranged for me. My job was simply to sit on the couch and wave good-bye – if I was even awake. Everything else was pretty much handled by everyone but me.

The sicker I felt, the easier it was to let friends and family take care of my kids. I’d much rather that my children spend the afternoon swimming with their buddies than watching me doze off or witnessing me drop to the floor in excruciating pain, a side effect of the white blood cell-boosting shots I received after each chemo session.

But when school started in the fall, not being in charge was harder for us all to take. I had to ask my husband to fill out the first-day paperwork, because I was simply too exhausted. I brought my mother and a teen from down the street to help me coach a soccer game, because the radiation treatments had weakened my voice. And when I went to Back-to-School night, several neighbors didn’t even recognize me and my puffy-from-steroids, eyelash-less face.

For the first school year ever, I wasn’t Jen Singer, class mom. I was Jen Singer, cancer patient. And that was hard on all of us, especially my kids.

But once my treatments ended and my energy (and my hair) began a glorious return, I started to pick up where I’d left off. By the time I found out I was in remission (and still am), I was slowly becoming the hands-on mom I used to be.

Now two years later, I am in charge of the kids – and the swim goggles – again. But I’ll never forget the generosity our neighbors extended to me the summer that I had cancer. I may have lost the ability to parent the way I wanted to, but I found something so much more important in the mailbox and beyond.”

When you were parenting with cancer, what was it like to let go of control of the day to day life of raising your kids?  If you are post-treatment, or in remission, do you feel like having had cancer has changed the way you parent?

For more stories, advice, and resources on parenting with cancer, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I have yet to figure out how Wendy S. Harpham, MD, FACP manages her life as a doctor, cancer patient, author, and mom of three kids. She’s a super warm, kind person too.

In the parenting section of my book Everything Changes, I recommend her award-winning book When a Parent has Cancer: A Guide to Caring for Your Children which comes with the kid’s book Becky and the Worry Cup. (She’s the author of many other books too including The Hope Tree.) I asked Wendy to guest on my blog today about talking to kids about your cancer:

“My children were 1, 3, and 5 years old when I was first diagnosed with lymphoma. I’ve been in and out of treatment ever since. Since I didn’t get well (and I didn’t die), I was stuck dealing with the double challenges of kids and cancer. Here are my top two tips for raising healthy children When a Parent has Cancer:

1) Establish and maintain open lines of communication. Studies confirm that even when parents try to keep their illness a secret, children know something is wrong. And the fact of the matter is this: Children WILL draw conclusions based on what they are seeing and hearing, and what they know.

Open lines of communication create opportunities every day for adults to guide children toward accurate, yet healthy and hopeful interpretations of the events, and toward adaptive coping skills.

2) Always tell the truth, couched in love, hope and support. Sons and daughters need to be able to believe their parents in order to grow up into adults who, in turn, can trust others. With the added stress and uncertainty of illness, being unfailingly honest gives children buoys of assurance in a sea of uncertainty.

Whether parents mean to or not (and whether they believe it or not), to lie to children is to say, “Dear, I don’t think you can handle the truth.” Conversely, by telling the truth, parents send children a powerful message, “I respect you. I believe you can handle my illness. You can handle the truth.’” What better way to build a child’s self-esteem?

The greatest gift we can give our children is not protection from the world, but the confidence and tools to cope and grow with all that life has to offer.”

How long did you wait between when you were diagnosed and when you told your kid? Do you think your kids knew something was up? How did you explain it to them? Did you brainstorm much about what you would say, or did you kind of wing it? How did the conversation go?