Everything Changes - The Guide to Young Adult Cancer

I lived a deprived childhood.  I never was part of a science fair.  Seems like everyone else I know had science fairs… maybe my school was just too cheap.

I got a chance to make up for it last night as an author at a Chicago literary fair.  The challenge was to make science fair-like projects out of our book.  (Sweet PR change of pace from my usual writing articles and planning speeches.)

I took quotes from my book Everything Changes, and wrote them on little paper doors that you could life up and read about the cancer patient who said them.   For example:

“I’d ask my doctor a question, and he’d say, ‘We’ll cross that bridge when we come to it,’ and I’m like, ‘No, f*** you. This is my body, I’ll cross it right now.’”

Amilca Mouton Fuentes, 26, leukemia.  Lives in her parent’s house with her husband, 15 month old son, and her siblibings.  Seven adults and one bathroom.
Loves Krispy Kremes, and is devoted follower of Ama, an Indian spiritual leader.

“I believe that there are times when it is appropriate to receive help, just as there are times when it is appropriate to give help. If you ever refuse to receive, you are unnecessarily putting a barrier between yourself and the love of others. It’s normal for humans to live in communities where there is love and relationship, and receiving is just as important a part of being in that community as giving is.”

Richard Acker, 36, colon cancer.  Dad, husband, environmental lawyer.  Evangelical Christian dedicated to preserving God’s creations.

I had eight quotes in total that helped break stereotypes of cancer patients, and taught a bit about some of our attitudes and lives.  But I still feel like I ultimately failed in that I couldn’t come up with a connection between young adult cancer and an exploding baking soda and vinegar volcano.

If you had unlimited time and money to create an outlandish, over the top, large scale science fair project about your life as a young adult patient, and it were going to be show at a place like…let’s say ASCO, what would you make?

Read more about Amilca and Richard in Everything Changes: The Insider’s Guide To Cancer in Your 20s and 30s.

Last night was Shannon’s office party.  (Fantastic blue cheese, good shrimp.)  One of his co-workers gave me a seriously long hug, clutched my arm, and looked deeply into my eyes. “How are you?,” she asked.  “I’m great I replied.”  “No.  REALLY.  How are you feeeeeling?,” she asked.

Some people who know that I’m a young adult living with incurable cancer expect me to feel like crap or be in misery. And when I’m not I get the ‘you’re a heroic trooper’ comments, the puppy-dog-eyes look, or the ‘it’s okay, I get it, you can be honest with me’ statement of disbelief over my feelings of wellness.  It’s maddening.

If me feeling great isn’t good enough,I wish they ask: ‘Do you feel the physical impact of cancer on a daily basis?’  I love blunt and upfront communication, and think this is what they are trying to get at.  I would reply: ‘I can’t feel the tumors and I’m not on treatment. I’ve gotten used to the side effects from my meds.  The hardest part is often the mental trip of cancer, but I’m really doing great right now.’

That kind of sounds like a kick ass reply, huh?  Maybe it should just be my response when someone asks me the overly tender ‘How are you doing’ question.  Though I wish I could get away with “I’m great, how are you?” just like everybody else.

As much as these pitying interactions really piss me off, I see a flip side.  Today the New York Times has a section on the voices of lupus.  After listening to people talk about this rather mysterious and unknown disease,  I see I’m lucky to have a disease with good name recognition that others take seriously.  Prior to my cancer diagnosis, my doctors suspected lupus. If I were a lupus patient, I might look great, feel like crap, and nobody would even bother to recognize my disease or pain.

Do people ever ask you how you are feeeeeling in a way that is different from how they talk to someone who is not ill?  How do you respond?  Do you appreciate the recognition and attention, or do you wish they would approach you as they approach others?

Read more about illness and social interactions (both victorious and defeating) in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

“If I had a message to the men of the world who have rejected women with cancer it would be f*** you! No. You’re an idiot. No you’re just selfish. It’s so pathetic- do these men not think that they could get sick some day too? It is just bad karma.”

These words spouted from Melissa Sorenson’s mouth, to my tape recorder, to the pages of my book Everything Changes. I high-five her all the way. But it’s not just a message to men. Plenty of women have rejected guys with cancer too.

Diagnosed with rectal cancer at 41, James Buchanan writes about cancer and dating. Gas eruptions on a coffee date; a woman who was fine with cancer but not his colostomy bag; and finally Lesleigh, who was up for both. This is a great description of their first time in bed:

“We undressed and climbed into her bed, but cancer had one more ‘f*** you’ in store for me. Hidden beneath the pain of the radiation and surgery and the sickness of chemo was damage to the nerves necessary to achieve an erection. My body and mind wanted her frantically; my soul silently screamed in embarrassment and anguish.

As I would learn later, these difficulties were an on-again-off-again problem that could be cured with a pill when necessary. But for that night, I held her in quiet sorrow. I was convinced that my life would never be whole again, that this relationship was nothing more than a promising meal about to be taken away from a starving man.

‘I’m sorry,’ I said. ‘Is it me?,’ she asked. ‘No, not at all, never,’ I replied and then feebly described how my treatment had been so focused on this one area of my body that it was inevitable it would have obliterated the anatomy required to make love to her. Lesleigh rested quietly next me, naked, beautiful and sexy, and my newfound impotence burned hotter than anything I had ever felt in my life. Then she turned and kissed me. I wrapped my arms around her as she curled into my body and we lay together, naked and sad.

Lesleigh and I worked through my cancer and physical infirmities, and as we have progressed and fallen in love we have brought our kids together and established amongst all of this complexity a family based on a healthy and loving relationship. At no point have I doubted Lesleigh’s love for me nor my love for her.”

I love James’ story not just because he and Lesleigh got married in the end, but because it is such a good example of why great communication really matters.

I hear so many cancer dating horror stories. Do you have stories about people who are loving, accepting, communicative? What worked and didn’t work for you with cancer and dating?

Check out the sordid details of my dating life, including a very happy ending, in my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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.

One of my big cancer distractions as of late is spending hours on Yelp praising local businesses that I love. (Watch out, it is addictive).  Now there is a really cool cancer answer to yelping, better known as the 2009 Cancer Fighters Awards on GreatNonprofits.org

Here’s the deal. If you have volunteered, done fundraising, been a client at, or in some other fashion encountered a cancer organization, you can post reviews and stories on GreatNonprofits.org.  The nonprofits that get the most positive reviews during July will win the contest.  Which means tons of kudos and exposure for them.

In case that is not enough, individuals who post reviews of the winners will be eligible to win great prizes such as a free autographed copy of my book “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s,” Organic Valley Milk for a year, spa packages from Osmosis Day Spa and Kabuki Springs and Spa, baked goods from Dancing Deer Baking Co., and more.

I think this is an excellent idea, because it not only helps your favorite organization gain praise, but it helps them get feedback about what they are doing right, wrong, and what they could do differently.  I think it is super fun to brainstorm some of the questions the site asks - such as if this organization had 10 million bucks, what do you think they should do with it?  Log on to Greatnonprofits.org cancer campaign and let them know!

I’m curious to know too– what is your favorite cancer non-profit and if they had 10 million smakeroos what would you want them to do with it?

Check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for my fav-o-fav young adult cancer organizations.

Today’s post is longer than usual. I get great emails from people who have read my book Everything Changes. I thought I’d share this one with you and my response:

Dear Kairol,
You’re the only other person I’ve found with a tricky case of thyroid cancer with no cure. How did you deal with it? Having my cancer labeled as “recurrence” worked because then we could do something about it. But now it is seen more as incurable.  The constant monitoring and the knowledge that it’s lingering sucks. Lately I’m always thinking about it. Did you just accept it at some point? How long did it take? Blogging helps a bit to get the thoughts out of my head, but it’s sort of driving me nuts. Any suggestions, advice? - Robin

Dear Robin,
You’re in territory familiar to anyone living with chronic disease. It is very unusual for papillary thyroid cancer to be incurable, but here you and I are. I’m living with two tumors in my neck and am not receiving treatment (I’m refractory) and won’t have surgery unless they grow significantly. I’m doing this under close supervision of a top-notch doc at Memorial Sloan Kettering. This approach is a recent shift for me. Your question made me reflect on how I’m coping with incurability.  Hold tight, some of this seems nauseatingly Oprah-esque but just stick with me:

Acceptance and relief. My experience is opposite yours. Knowing that my cancer is incurable has dissipated my fear and anxiety somewhat, which is hilarious considering what a high-strung freak I can be. When we still thought there was a cure, I was hyper-stressed wondering “Will treatment work this time?” “Will my scans show me as cancer free?” It seems twisted, but in this world of being incurable, I find relief in not having to grapple with these unknowns and in not having to recover from the continual and exhausting disappointment of bad news. Of course I’d rather have good news, but I’ve rarely received good news in nine years of cancer and I’m sighing with relief at calling a spade a spade.

I now mark success not by the absence of cancer but by whether the tumors have grown or stayed the same (I want to include shrinking as an option but I feel too jinxed to do that.) This is a big change that I’m still adjusting to.  And yes, waiting for blood test and scan results still SUCKS but is getting ever so slightly easier with time.  Either that or my distractions are just getting better.

Expert Care. My new doc primarily sees patients with challenging cases. He has no pity, confusion, or odd curiosity about my case. He has seen tons of patients in my shoes and can tell me what to expect. This is tremendously reassuring.

Deep Distraction. I’m good at feeling my feelings, and at finding supreme distractions: a person can only take so much wondering if cancer has spread to other organs. My book Everything Changes hit the shelves while the reality of my chronic condition was unfolding. Keynote speaking, blogging, answering fan mail, and having book parties around the country are incredible distractions. (Anyone who wants to host a book party for me – just say the word!)  There is a fine balance between running from reality and plunging into a well deserved, therapeutic lifestyle of perfectly legal distractions.  Find that balance.

Simple Comparisons. 98% of the time comparing oneself to other cancer patients is a supremely bad idea and only leads to jealousy, guilt, or worse - forced gratitude. I have found a small exception. I live daily with the intimate stories of 25 people who are in my book.  Their cancers are faster growing than mine (most papillary is very slow growing) and my survival rate is still very good.  I may or may not have to deal with some more complicated medical hell in the future.  And that scares the crap out of me.  But I know I still have a good chance of living, and compared to these other patients I have come to adore, I’m down right grateful.   I do not make these comparisons to force myself to feel better – again, horrible idea – but the comparisons are just happening naturally for me and result in some deep appreciation for my struggle and theirs’.

Being Myself. Who I am changes because I’m growing up, adjusting to cancer, and seeing the world differently as life moves on. How I feel now about my cancer today will not last forever. What’s easy for me to digest now may become harder, and then will become easier again. That’s why I love the mantra Everything Changes. It is just true.  When I’m in an hideous headspace about my cancer, I don’t beat myself up about feeling like crap. I let it be and know that it will change. Relieving this pressure helps. Seeing a therapist can be helpful too, as can my current system of therapy: baking strawberry cobblers, talking out my fears with Shannon, renting espionage movies, and remembering that Everything Changes.

Does anyone else have advice for how to live with recurrences, incurable disease, or what to do with cancer fear in general? Have you made the shift from acute to chronic and how did you deal with it? If you have other questions for me, send them my way. I’d love to answer them.

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn  how Wafa’a, Geoff, Greg, and Holly Anna have dealt with illness over the long haul.