Everything Changes - The Guide to Young Adult Cancer

When  I was 27 years old, I sat on a pleather exam table and had a doctor two years older than me tell me I had cancer.  Everything in my life changed.  But, this is actually not why I called my book Everything Changes.

During cancer treatment, many patients rack up hours sitting on their toilets.  I kept a big stack of reading material next to mine.  I would open to random pages in the Tao de Ching, a Chinese philosophy book written in the 6th century BC.  One day in the midst of wishing my life were different, that my body aches would subside, that I would not be single on a Saturday night sitting on the toilet with cancer – I opened to a random page in the Tao de Ching and pointed to the words ‘Everything Changes’.  And it is true.  I’m now married. I still have cancer but I rarely have body aches.  And I spend much less time in the bathroom.

The mantra ‘Everything Changes’ gets me through the hardest moments of living with cancer.  No matter what any of us are experiencing right now, a basic truth is that everything changes.  It is great to know that I won’t stay stuck anywhere forever.

I’m not naive.  I know change could lead me down hill instead of up.  But that’s just reality.  I don’t need magical thinking to get me through tough times.  I just need a bit of truth that keeps me moving forward.  Everything changes.    That’s real.  That’s something I can count on.  And in desperate times, having something to count on is my definition of hope.

I loved talking to Tracy, a breast cancer patient in Alabama who I interviewed for my book.  Before each treatment, she sat in the parking lot and read Psalm 23.  Do you have a favorite quote, phrase, scripture, or mantra that gets you through hard cancer times?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about Tracy and how she coped with treatment related fear and depression.

I get winded from climbing a flight of stairs.  This is pathetic.  Aside from having two tumors in my neck (which have no impact on my lung capacity) I’m not sick.  I’m just lazy. I’m a skinny, out of shape weakling.  I’ve always hated exercising.

I’ve been a dancer and choreographer most of my life.  But to me it never was exercise; it was a profession.  Since my first surgery I’ve suffered from dizziness that keeps me from dancing.  I feel like I’ve been evicted from the heaven of the dance world and am now walking among mortals who have to face the drudgery of jogging, yoga, and stair masters.  I find exercising utterly and mind numbingly boring.  I detest it.

I’ve tried many strategies to get myself to exercise.  Positive reinforcement: Reading clinical studies about exercise benefits for cancer patients.   Negative reinforcement:Imagining myself  with osteoporosis.  Guilty reinforcement: Thinking of young adult cancer patients who are too sick to even walk.  Creative reinforcement: Rearranging corners of my house as workout space.  Retail reinforcement: Buying a new pair of Adidas.  Practical reinforcement: Creating 20-minute exercise schedules n my mind.  Writerly reinforcement: Writing tips in my book Everything Changes on how to get back into exercise after surgery and treatment.  None of these tricks have worked.

As a cancer patient, I’ve learned that sometimes how I think and feel about something doesn’t really matter.  Sometimes in life you have to force yourself to do things whether you want to or not, like having surgery or radiation. So if exercise is boring to me maybe that just doesn’t matter.  Just do it.  I’m lazy and unmotivated?  Just do it.  Maybe this is why Nike’s slogan Just Do It really stuck.  Perhaps it appeals not only to motivated athletes but also to lazy consumers like me.  I originally thought that writing this blog post outing my slothy lifestyle would shame me into exercising.  I don’t think so.  No trick is going to work for me.  I just have to do it.

Do you have a love, love/hate, or hate relationship to exercise?  How does illness impact your exercise choices?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for tips and recommendations on how to safely exercise after surgery and treatment.

Fear is something I have experienced much of in the last nine years since my diagnosis, and my feeling is that it is not something that I “surmount” or “overcome”, but something that I go “through”.  It is not always pleasant, and coming out on the other side is not always a victory march. Sometimes the only benefit to living through my fear is the reminder that I am human and that suffering is part of the experience.

Sounds depressing huh?  Well not really.  For me I think that living through fear is the stuff that compassion is made of.  It is what allows me to understand and empathize with other people’s suffering.  When writing and researching my book Everything Changes, I sat in the living rooms of so many twenty and thirty-something  cancer patients who confessed to me their most private thoughts about living young with illness.  They talked to me because I listen and I get it, because I have been there and done that.  And when I say been there and done that I’m not talking about cancer, I’m talking about walking through fear.  Fear is a monster but it is also a common denominator that connects me to other people’s experiences of life.

I am living with two tumors in my neck that don’t uptake radio active iodine treatment and there is a limit to how many surgeries I can have.  Sometimes fear is too much for me and I have to check out from it by sticking my head in the TV or popping a xanax.  I cannot walk through fear 24/7.  But I do walk through it a lot.  And it’s scary.  I’d so very much prefer living an alternate life with an alternate medical history, but I do recognize that living with fear just means that I am human, and for now, I have to take what I’ve got.

How do you cope with fear?  Has the way you handled fear changed the longer you’ve lived with illness?  Did you have any idea just how much the cowardly lion looks like a cheap drag queen?

To learn more about how other young adult cancer patients cope with fear, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

During my first cancer treatment I was scared and in pain. I wanted hope and an escape, reassurance and strength. It came in the mail.

I received a hand written letter full of empathy and understanding from a guy named Brian. He had suffered from Crohn’s disease and knew what it was like to feel young and beaten down. He told me to remember often the time in my life when I felt the most proud of myself, to remember the details of that moment and how it made me feel. It would get me through the worst of times, he said. And he was right.

I remembered a dance performance I created two years before my diagnosis. I worked so hard and fiercely designing the movement, costumes, the sound score, and an intricate backdrop. I worked with an opera singer, live musicians, and dancers. I wove together their stories with historical documents. At the end of each performance the audience and performers were teary eyed.  It made people think and open up. It was the shining moment of my lifetime.

When I was my lowest during treatment, I took Brian’s suggestion and showered myself in the memories of this hard work and sense of accomplishment. It stirred in me the feeling that I could do anything. In moments when I wanted to die, these memories reminded me about the best parts of living, and that I wanted to make more work that would deeply affect people.

Here was the clincher though: I didn’t know Brian. We went to the same college. He heard about my cancer through the grapevine and went out of his way to obtain my address and send me that letter. Someone who I don’t even know played one of the biggest roles in getting me through the emotional treachery of my treatment. Years later, I’m now trying to find him. I’d like to say ‘thank you’.

Have you ever received wisdom, advice, gifts, cheering on or help from strangers?  Have you ever given it to a stranger in need?  Do you have a “most proud moment”?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about the stranger who sat with MaryAnn and got her through her hardest day of treatment.

I got an email last night from a cancer patient.  She asked that I not use her name.  So I’ll call her Mia.  She wanted me to pose a question to you:

“The day I received my fourth diagnosis, I called my mother on the phone balling, crying. I could barely talk.  ‘How f***ing strong do I have to be?  Four times.  Four f***ing times,’ was all I could say.  I was in shock for days.  I live in a neighborhood with a lot of alcoholism.  After many years of not drinking (because I wanted my children to know they have a choice to not drink), I was at a friend’s house and grabbed a beer. Later that same night I drank more in a bar.  Driving home from the bar I got stopped by the cops. I got a DUI.

“Months after my surgeries and treatments the charges were reduced.  I’m in remission again.  Now I have to contend with all my mistakes. I honestly have no idea what happened to me.  It was something that my ‘healthy’ self would not have done.  How many others out there reach their breaking point and throw their hands in the air and just say ‘f*** it’ and have a moment of insanity or self-destructive behavior?”

Mia’s not alone.  In Everything Changes, I write about Wafa’a, a young adult lymphoma patient who cut herself as a teenager and began again after recurrence.  Wafa’a said, “When I get a cancer diagnosis, I feel sadness, frustration, anger, loneliness, and really violent, like I want to break something and freak out.  Some people get anger out externally but I want to take it out on myself.”

I too understand the need to explode from cancer’s intensity.  A few times I’ve craved dragging hard on a cigarette  but just could not go there.  The day after I received test results showing a rare variation in my cell type, I chucked a dozen eggs against my shower walls while screaming and crying.  It was satisfyingly messy and violent, but safe.  (I now think shower drains should come with disposals for shells.)

Like Mia, have you ever had a breaking point of insanity or self-destructive behavior?   Have you found any safe and healthy ways to let your violent anger out?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how Tracy, Wafa’a, and Geoff navigated through self-destructive thinking.

I spent my first month of cancer trying to weasel my way onto COBRA. (Check out the podcast from my interview on yesterday’s Fresh Air with Terry Gross, where I talk about this and other young adult cancer issues.) One of my tactics was pulling the cancer card with COBRA phone representatives: “I’m 27, I have cancer and no insurance, pity me.” It was life or death and I was shameless.

Pulling the cancer card so early on in my diagnosis initiated me into the world of asking for help from others. And I got pretty good at it. But, most other patients I interviewed in Everything Changes told me that asking for help crushed their pride and amplified their lack of independence. Listening to these other patients, I started feeling guilty over not feeling shameful about asking for help.  Had I spent my whole life as a louse in disguise? Was cancer the ultimate chance for me to be waited on while I ate bon-bons?

Hardly. When I was diagnosed I lived in an isolated studio apartment in a rough neighborhood with no amenities. My laundry was down three steep flights of stairs in a garage that looked like a crime scene from Law and Order. There were no quick trips to the grocery store, no roommates, partner, or next door neighbor asking to pick up prescriptions for me. The only way I could get my needs met was by asking people to go out of their way to help me. There was a familiarity to it all: I had spent my childhood watching my grandmothers shuttle chicken soup across town to whoever was in need.

My second radiation treatment was the height of my helplessness. I was so weak I asked a guy friend to walk me to the bathroom. He had to prop me up on the toilet as I peed. While my extreme illness sucked, there was a small benefit to being humbled in this way: it reminded me that I’m human and I cannot make it alone.

What is it like for you to ask for help from others? Have you ever refused to ask when you really needed it? How do you handle it when people cop out, say no, or don’t show?

For practical resources on how to build and manage a your support system, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

My mom and dad drove to Chicago for an impromptu Labor Day weekend visit.  My mom sat by my computer this morning as I checked my email.  We began a conversation about Wendy Harpham’s blog post on “What doesn’t kill you makes you stronger.”

Cancer not only sucks for me, but it hugely sucks for my parents to have watched me go through it. I asked my mom what she says when someone tells her “What does not kill you makes you stronger.”  Her reply: “I’d rather be weak.”  I love my mom’s line of thinking here.  It is so her: bold, tactful, and humble.

I think and write a lot about ‘What is strength?’ ‘What is weakness?’  It seems to me the cancer community has blown out of proportion the concept of strength. My back has been up against the oncology wall many times when I’ve gone under the knife or swallowed a radioactive iodine pill.  I’ve surmounted these challenges not because I’m strong, but because the alternative means dying.  It is strange to have placed on me such lofty personality judgments and descriptors like strength, courage, and inspiration in response to having gone through situations that stink and about which I have no other choice.

In Everything Changes, I interviewed Jill, a 38-year-old breast cancer patient.  She said, “The last thing I want is people cheering me on because I had a disease that I didn’t want, was miserable getting through, and wish I never had.  That should not be my moment of fame.”

I agree with her.  I’m not saying don’t celebrate the fact that I’m still alive.  And I think it is great to honor cancer patients and recognize the challenges we face.  But don’t call me strong when I have no other choice.  It discounts the many nights that I sobbed alone into my pillow and felt cowardice in every inch of my body.  I don’t want to erase those moments with a clean sweep of ‘strength washing’; one of the best by-products of my  cancer is that it has helped me befriend weakness.  I no longer think of weakness as a negative term.  In fact, I’m pretty damn proud that I can let myself feel scared and vulnerable.  After all, cancer is scary business.

What is your response when someone says “What does not kill you makes you stronger?”   What do you most want to be celebrated for?  If you have a different illness, is there a lot of “strength talk” about your disease?

For more encouragement on finding strength through vulnerability, check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

You’ve asked for it so here it is: for the next two posts we’ll be dishing on early menopause.  I still get monthly visits from Flo, so I asked Emily Beck to write about this subject and moderate conversation.  Emily is a 30-something diagnosed with ovarian cancer in summer of ’07 and finished treatment a little over a year ago.  Take it away Emily:

TURN, AND FACE THE STRANGE
Somewhere in Cyber-space, a fellow inductee into the world of early menopause said, “Menopause does not mean you suddenly develop an irresistible impulse to start shopping at Chico’s.”  When I first heard this witticism, I had yet to be gripped by one of the most feared dimensions of The Change:  WEIGHT GAIN.  I had lost about 15 lbs. thanks to surgery and chemo, so it wasn’t until quite a few months after treatment ended that I started to feel myself…well, expanding.

Before cancer, my weight had always been stable (save for a bacchanalian year spent living in New Orleans), so the menopause-induced shape-shifting which befell me was a bit hard to accept.  Most of the weight seems to have settled in my boobs, hips and thighs, so with careful sartorial planning, I can still show-off my slim arms and calves without drawing too much attention to what I think of as my middle-aged midsection.    Nevertheless, when I catch myself in the mirror at the gym or – heaven forefend – in a dressing room, I think to myself, “I am now officially middle-aged; I am shaped like a pear.”

I am working steadily on making my peace with my new body.  So gone are the days of trying to stuff my boobs into pre-cancer bras (I’ve gone up a cup size) and cinch an old pair of jeans (also up a size) around my lumpy belly.  When I was unpleasantly thin after surgery and during chemo, I hated the fact that I could feel my pelvic bones so prominently.  Now, those same bones are nicely padded, thanks to menopausal weight gain.

At 36, most of us probably aren’t thinking about menopause.  Middle age and the inevitable over-turning of the hormonal apple cart might be out there on the horizon, but before my unexpected introduction to this traditionally mid-life extravaganza, I still thought of myself as pretty young.  Now, though, I have to wonder if cancer hasn’t made me old before my time.

Do you ever look in the mirror and think, “Who is that?”  Can you tell if changes in your shape are from hormones, treatment, or just being a young adult who is naturally starting to age?  Have you experienced early menopause?

For practical resources on coping with young adult cancer and body image check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I do.  Read this book: Your Brain After Chemo: A Practical Guide to Lifting The Fog and Getting Back Your Focus by Dr. Dan Silverman and Idelle Davidson.

The best trick for cancer brain fog is to learn about it and become empowered. Your Brain After Chemo provides copious information on cancer brain fog, how it works, and how to talk to your doctor about it.  Written at what seems like a 8th grade level – it’s a super easy read for a fried cancer brain.

“Knowledge is power” sounds cliché, but I felt more in control of my brain after reading this book.  Why?  Young adult thyroid cancer patients (I’m one) have been shown to complain of memory problems more than any other group of young adult cancer patient, but rarely are we treated with chemo. It was extremely validating to read that memory problems may also be caused by fatigue, depression, anxiety, and sleeplessness.  (Hence, I am starting a personal campaign to stop calling it ‘chemo brain’ and start calling it ‘cancer brain fog’.)

Chapter 6 talks about different kinds of concrete brain tasks.  It helped me realize there are a plethora of ways in which my brain still functions beautifully.  And, it provided more technical concepts for describing the ways in which my brain is on the fritz.  This improves my intellectual self-esteem. I now tell myself I have a hard time with verbal memory; much kinder than saying my brain is screwed and I’m an idiot.

The book fell short in a few places: I take with a grain of salt studies with only 24 participants, and there were a bunch cited in this book. (Granted “chemo brain” has been under acknowledged and under researched until now.)  The brain food section seemed contradictory and a bit superficial. The book lacks a 411 on our rights and access to assistance in academic and workplace situations due to cancer side effects.  This is a big one for young adults.  Still, I think Your Brain After Chemo is a great read for any cancer patient.

Here’s my favorite practical tip of the book followed by a few of my own:

* Eliminate scrap paper, write everything down in one notebook instead.
* Use highlighters and take notes when reading anything.
* I call my cell phone and leave messages to myself on my voicemail.
* I use a vintage office mailbox set with 12 compartments next to my front door to sort stuff I normally lose: keys, important papers, plane tickets, my dog’s leash.

Have you ever talked to your doctor about your cancer brain fog?  What was their reaction?  What ways have you learned to cope?  What tricks do you use to help your life go more smoothly with a scattered brain?

If you experience cognitive deficits caused by cancer, they be covered in the workplace under the American’s With Disabilities Act.  To find out more, read 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.