August 28, 2009

Did You Reinvent Your Identity to Accommodate Illness?

carrie-groceries

In 10th grade chemistry I created 40 phonetic spellings of my first name, chose Kairol, and it stuck. (I was born with the Mrs. Brady spelling. And yes, in 1987 you coul make up whatever name you wanted and slap it on a drivers license.)

So, I got curious when I recently learned Matthew Zachary, founder of I’m Too Young For This, is actually named Matthew Greenzweig. He developed Matthew Zachary as an alter ego after treatment. Here’s what he told me:

“When I was a senior in college, I was a concert pianist diagnosed with brain cancer. They said I’d never play again. I had horrific radiation, was so depressed, and thrown into the lion’s den of trying to figure out what happens to your life after treatment. That was the story of Matthew Greenzweig’s life and it was uncomfortable to be him.

I needed to reinvent myself. I taught myself how to use my left hand again and to play piano. I used my middle name ‘Zachary’ as my stage name. It was an identity created out of desperation; I was refusing to let cancer define me. My chaos, grief, and anger got channeled through the anchor of my pseudonym.”

Like Matthew, I messed with my identity during treatment by changing the way I dressed. I created outrageous pseudo-couture outfits from thrift store finds and wore CFM heels to the supermarket. It helped to feel more like Carrie Bradshaw and less like Kairol Rosenthal.  (Funny that my current wardrobe consists of sweatpants and hoodies –I should be thrown to Stacy and Clinton.)

As my cancer has lingered, I’ve switched careers from a choreographer and to a writer. Living with incurable cancer, I feel more comfortable holed up in the contemplative den of my apartment, living the writer’s life. If I had a choice, I would rather something less painful than young adult cancer as the catalyst for a career change, but here I am. And I’m pretty damn comfortable with my identity.

Illness changes many parts of our identity over which we have no control – becoming a bald woman, someone who can no longer work, who cannot conceive children… But, have you ever responded to illness with a temporary or permanent identity change that you do have control over?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to find out why Nora wore her Chrissy Hynde wig long after her hair grew back, and Mary Ann started dressing in outfits that made her feel like a lobbyist.

Post to Twitter Post to Facebook

8 comments
August 25, 2009

Do You Push Your Limits When You’re Sick?

canal

I just got back from a ten-day heavenly trip to Georgia with Shannon: lush palms, Spanish moss, butterflies, lazy boating on a lotus lined river, and my mystery fever (just for a day).

I get mystery fevers every few weeks and have for a long time.  I down Tylenol, drink tons of water, lay low that day and don’t push it the next day.  If I get a little cancer PTSD, I take xanax and snuggle with Shannon.

On vacation, the day after my mystery fever, we visited the gorgeous Savannah-Ogeechee Canal with a 1-mile roundtrip walk. The heat index was 100 (which I actually love – call me crazy), the terrain flat and stunning.  I heard a voice in my head saying with confidence: “Don’t do the walk.  I know my limits…. Blog about this when I get home.”

Knowing my limits is instinctual now, but it wasn’t at the beginning of my cancer ride.  I used to push myself hard, like a poster-child cancer patient who was getting the most out of life. I was like Wafa’a, a lymphoma patient in Chapter 3 of Everything Changes, who was addicted to clubbing.  I didn’t want to feel left out, be home alone, or let cancer get the best of me.

But over time I’ve changed my definition of what the best of me is.  The best of me is not Kairol conquering a hiking trail in the beauty of nature, nor is it me feeling sexy in a great summer outfit, nor dancing my heart out in ballet class.  The best of me is when I can look long and hard in the mirror and just be satisfied with who I am no matter what I am doing or how I am feeling. There are no limits to this “best of me.”  I know, I’ve done this look’n-in-the-mirror as a pasty white ghost in a hospital gown about to swallow 150 millicuries of radiation.  If I can be the best of me in that situation, then I suspect it is fool-proof.

Recognizing the parts of me that are limitless makes it so much easier to accept my limits.  No big hike?  No biggie. I sat on a rocking chair at the ranger station and looked at the sky.   It was pretty lovely.  Ultimately I don’t know if it’s cancer that taught me to know my limits, or if it’s just part of being a young adult who is maturing and happens to have a few tumors in my neck.

Do you have a hard time knowing what your limits are?  Do you push them, respect them, hate them?  Has this changed for you over the course of your illness?

Read more about Wafa’a the cancer clubbing queen in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Post to Twitter Post to Facebook

8 comments
August 21, 2009

Adapting to Early Menopause

tampon

Here she is again, continuing on from Wednesday’s post – the amazing 36 year old ovarian cancer patient from Philly guest blogging about early menopause – Emily Beck.

The Dark Side of the Moon

I am not mystically inclined.  I love The Lord of the Rings as much as the next person, but I have never been a druid (one of my friends in middle school claimed that she was), a sun worshiper or a witch (a college roommate was most assuredly one of these.)  But one of the hardest things to adjust to about menopause has been losing my connection to the cycles of the moon.

For some people it’s probably hard to imagine missing anything about menstruating.  (No more cramps?  No more PMS?  No more tampons? Where do I sign?!?)  But cancer robs us of so much that we take for granted, and for those of us who are sent into either surgically or chemo-induced early menopause, it takes away the primary way in which most of us feel connected to the rhythms of our body, the hormonal cycles we often curse, but which define so much of what it means to be a woman.

In the year-plus before I was diagnosed with ovarian cancer, I was trying to get pregnant.  I had begun the tedious (but fascinating) process of taking my basal body temperature and paying somewhat pathologically close attention to the nature of my vaginal discharge.   Charts and notes related to my menstrual cycle piled up on my night table.  I was peeing on ovulation detectors in the bathroom at my office, and rushing home to demand sex on the appropriate day.  I was, to put it mildly, in tune with my body.

After my hysterectomy, it was as though the tuner connected to my hormonal cycles broadcast nothing but static.  Without the signs to which I had grown accustomed (tender breasts, the changing texture of my discharge, and of course the thrills of a monthly period), I suddenly felt unmoored – disconnected from my woman-ness, and from the cycles of nature (the moon, the tide) that I had always associated with my monthly hormonal evolution.

I remember distinctly a stretch of time, probably during college, when the first day of my period continually fell on the same day as the full moon.  Suddenly, I had a new sense of the ways in which my body and the experience of being a woman connected me with nature.  It was pretty damn cool.

Now, over a year and a half post-hysterectomy, I am still searching for new ways to feel connected to the earth and to stay aware of my body’s rhythms.  The patterns are new, but the goal is the same:  to stay in touch with the physical essence of being a woman.

Have you gone through early menopause?  Does it make you feel like you are missing part of your womanhood?  How have you adapted?  Any tips of suggestions?

Check out It Girl, a chapter in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, in which Mary Ann talks about feeling the loss of what she always considered to be her womanhood.

Post to Twitter Post to Facebook

4 comments
August 19, 2009

Listen to Me on the BBC Radio

I’m taking a vacation from cancer.  And the rest of my life.  (That is why I have some great guest bloggers on this week!)  I’m eating low country boil and sweet potato pie on a slow relaxing Georgia trip with my man.  No computer access at all.  But when I learned that my interview about young adult cancer and health care in the United States aired on the friggin BBC radio, I just had to duck into a library, get online and listen to it!

I hear from so many people all the time who are young with illness and totally screwed by the system.  People think young adults are naive and don’t want health insurance.  Bull.  We just aren’t give much access, we fall through the loops, and it is completely unaffordable.

Listen to MY BBC RADIO INTERVIEW on health insurance and young adult cancer. Click the link and fast forward to minute 13.  Please forward and tweet this widely.  We need stories about the young adult health care crisis to be heard here in the United States, not just in England!

Hope you are all doing well.  Now back to my sweet tea and collection of short stories.

Over and out,
Kairol

PS – If you were interviewed by the BBC about health insurance – what stories would you have to tell them?  Is this story something you could write about concisely and try to get it into your local newspaper as a letter to the editor?  Could you call your representative and tell them about it?  Have you ever done either of these things?

Post to Twitter Post to Facebook

3 comments
August 19, 2009

Changing Body Shape – Old Before Our Time?

pear-shaped

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.

Post to Twitter Post to Facebook

6 comments
August 17, 2009

Have you ever used visualization or imagery?

classgirlsjump

Our bodies are great at remembering hard times: The smell of alcohol in a hospital makes my heart race.  I can’t wear turtlenecks because they remind me of the compression bandage on my throat after my thyroidectomy.

But the flip side is that our bodies can conjure great experiences too.  Here’s one: My body remembers the days when I was a dancer.  Heat and humidity meant my muscles were always flexible, pliable, and ready to go.  I could enter the studio and launch into the fun stuff with little need to warm up.  Now whenever I’m in heat and humidity, I feel totally motivated to do physical exercise.  (Crazy I know.)

Before my second surgery, I requested to speak with a chaplain.  I got a Lutheran minister.  I was born Jewish, but I’m not religious, and don’t believe in god.  Still, I love hospital chaplains.  In fact, if there were such a thing as God in my mind, he/she might appear to me in the form of a hospital chaplain.

He got me to start visualizing what it was like to relax in bed with my husband.  Yes, it sounded kinda trashy and weird coming from a minister, and freaked me out at first.  But I realized that he knew I loved my husband to pieces, it was really hard being in a hospital in a different city than where I live, and he was trying to make me feel at home and relaxed.  He asked me all about my bedroom.  I told him about the pale yellow walls, my mahogany bureau that belonged to my grandma, and how great it is to dive into bed and put my head on my husband’s chest.  It totally worked.  When the chaplain left I didn’t want my husband or family to come back into the room.  I was so peaceful and relaxed I wanted to be alone.

The words visualization and imagery sound so hokey and new agey to me.  But I guess that is what it was.  And it totally worked.

Have you ever used visualization or imagery to coax yourself into a better mental space during illness?  Was it useful?  Did you use the generic peaceful river scene or a place you had actually experienced before?

Many of you have said your favorite part of my book is HollyAnna’s kick ass cancer and river visualization scene read.  Read it in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Post to Twitter Post to Facebook

8 comments
August 14, 2009

Meshing illness and intimacy?

brick-wall-bed2

This post is much longer than usual but is so raw, eloquent, and well worth taking the time to read.  Leslie Rott is a 23 year-old lupus patient and grad student at University of Michigan.  She’s the creator of Getting Closer To Myself blog. Take it away Leslie:

I have been struggling for a while, feeling like I needed to write a post about sex/relationships, but it never felt like the right time, until I read the book Everything Changes in which Kairol writes: “In my first two years of living with cancer, the number of men I slept with had more than doubled”.

When I read this sentence, I stopped cold. This line got to me because it is me – the same thing happened to me in my first two years of living with lupus. Well, if you go from zero sexual partners in 23 years, to one or two in just a few months, it might not seem like much, but for a straight-laced person like me, it caused quite a stir.

The way the people around me were acting, you would have thought I had murdered someone. Maybe murdered myself. But this has nothing to do with self-respect. Because the truth is, I was being judged on terms that no longer applied to me. Yes, the “old” Leslie, the “healthy” Leslie, would probably have never done any of that. But it was about feeling good in a single moment, one moment without pain was worth far more than the potential consequences of my actions. Feeling wanted, needed, loved (doubtful), and even “normal,” was something that I yearned for, and that was the only place I found it. To be held, to not feel alone, to feel like someone else in the world other than myself and my immediate family had a stake in all this, that was what it was about.

Illness has, at times, clouded my judgment and filled me with a sense of urgency that I never had before. Because the fact is, illness is a major head-trip. If you’re not fully secure in who you are as a person, there’s no telling what will happen.

Kairol quotes Wafa’a, a young adult cancer patient: “Cancer makes you feel really alone, and you just want to be held and feel loved. Or maybe it is a coincidence, and I’d just really want those things right now even without cancer, and it’s just part of being twenty-four. I want to matter to someone else. I want to feel like someone is thinking about me. Since being sick, I’m just looking for a bit of stability, and I think maybe having someone else to love me is it. You can’t control life so maybe you can just date and control that, but you can’t control that either.”

When I first got really sick and no one could figure out what was wrong with me, I didn’t tell anyone, but the biggest thing I was concerned about was that I was going to die a virgin. And somehow, in my mind, this singular event seemed insurmountable.

I can only imagine the reaction had I ever expressed this fear out loud. It would probably have gone over as well as telling my rheumatologist that I didn’t want to be on prednisone because it made me fat and moody. A 40-something man certainly can’t understand where a 20-something woman is coming from in these terms – to him it makes me seem shallow, ridiculous, and heaven forbid, noncompliant (probably the worst thing in the world a patient can be labeled). Because apparently, when you are sick, you aren’t supposed to think about “normal” person things. You’re supposed to transcend all that, and see that life as a mere mortal is fleeting and fragile, not something that should be squandered away worrying about the things you haven’t accomplished. Just like I didn’t think anyone around me would understand that the fear of death was overshadowed by the fear of not having lived. So, when, in a moment of no thought, I decided to end my relationship with celibacy and make sure that dying a virgin wasn’t a possibility, it’s no wonder that the people in my life, the healthy people, didn’t understand the urgency and all of the emotional work that went with it. It wasn’t about sex. It was about what came with it, what came after, and unfortunately, what was very short-lived.

I used to be the one that people envied for having my shit together. Now I’m the one fighting for control of just about everything. I don’t feel like the envied one anymore. And if the people in my life haven’t realized that this isn’t about morals or character, that it isn’t about being that kind of girl, then they can get the hell out. Because if you haven’t been sick, I don’t really think it’s your place to judge.

I think when healthy people hear about a sick person engaging in behavior uncharacteristic for them, the first thing that comes to mind is risk taking. Oh, that person is sick or dying, they feel like they have nothing left to lose. But it’s not about taking risks. It’s about living, and attempting to feel like you matter, like life is worth fighting for.

It wasn’t until I turned to a complete stranger for support that anyone in my life realized that I needed anything at all. And this is my own doing, because I was scared and confused, didn’t know what to ask for, and didn’t really want to have to ask for anything at all. But the truly ironic part is that it wasn’t until this incident that anyone in my life realized how unhappy, how depressed, how scared, and how alone I had felt for nearly two years, and how truly nonexistent my coping had become.

There were a few people in my life who applauded these efforts, who said it was about damn time. But what I really needed, was something that I rarely got, which I think could only come from other sick people, is to understand that it wasn’t about sex. It was about having lived my life a certain way for 23 years, to get burned by illness, and to be left feeling like I needed to refigure things out. So I started with the new, with the untouched experiences in my old life that had hung over my head for years, thinking maybe that’s what was missing. And what I realized, is that what was really missing was a part of myself that no one, other than myself, could give me.

Kairol talks about what it’s like to find love in the face of cancer. Finding love is hard enough. Finding love in the face of illness is definitely something to envy and hold dear, if and when you find it.

Another patient in Everything Changes says: “Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time.”

Kairol herself, says: “[T]he most remarkable cancer patients are not those who are climbing mountains but those who have found a way to climb into bed at night and be honest with themselves about staring fear in the face”.

More than anything, “Everything Changes” made me realize that I have yet to really grieve about my illnesses. I tried to stay strong for everyone else around me that I forgot that maybe being strong for myself means not being strong at all. Maybe some of us never come to terms with illness. Maybe we remain forever wondering why we picked the short straw, or why our genetic makeup failed us. What I realize now is that anger – at ourselves, at G-d, at the world – is a necessary part of this process.

Kairol writes “[If] a broken heart caused cancer [or lupus, or any other disease] […]”, then all my friends would have understood my situation far better than they have. If illness could be explained in terms that even healthy people could really, deeply, intimately understand, well, maybe none of this would have happened in the first place. But I am attempting to live with no regrets, and to not beat myself up for the mistakes, er, I mean choices, I have made.

Are you as blown away by Leslie as I am?  What parts of her writing could you relate to?  Has your intimate life changed dramatically since being diagnosed with an illness?

For practical tips and resources on having sex with illness read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Post to Twitter Post to Facebook

5 comments
August 12, 2009

Is Eating Sugar Bad For My Cancer?

cookie-monster-diet1

During PET scans, my cells gobble up an injected glucose tracer (much like I gobbled up three pieces of blueberry pie in one sitting for breakfast last week.)  So if my cancer cells are thriving on sugar, does that mean eating sugar will encourage cancer growth?

No.  Our body chemistry isn’t that simple.  I’m bombarded by over the top and overly simplistic web comments and articles about cancer and sugar, written by folks who range from fad diet elites to total wacky freaks.  And that’s not who I trust for medical information.

Diana Ulman, founder of The Ulman Cancer Fund for Young Adults, recently told me about Rachel Beller.  She isn’t just another gal swept up by healthy eating who hung a nutrition shingle on her door.  She is a Registered Dietitian with a master’s degree and clinical experience, who makes recommendations based on evidence based scientific research – the kinda info that makes it into peer-reviewed journals.

Surfing her website, I found her article on cancer and sugar.  Here’s a great quote: “Sugar doesn’t just feed cancer cells; rather, sugar feeds ALL the cells of the body, including cancer cells. The body needs sugar to function, and if sugar is cut out of the diet, the body will then produce sugar from other sources of dietary intake, including proteins and fats. So cutting out sugar won’t really help. Cutting down may not be a bad idea because when one eats a lot of sugar, it causes the body to produce more insulin. Insulin promotes cellular growth, including cancer cellular growth. While insulin is necessary for normal healthy cells, too much of it can have undesirable effects, including increased cancer cell growth.”

Rachel suggests moderation (not so trendy, but very wise):  Increasing protein, fiber, and good fat helps the body produce less insulin while giving you good nutrition.  Eating sugar with a protein, fiber, and good fat helps your body process sugar in a healthier way.  Natural sugar is better for you, and she advises ditching soda and limiting candy and sweet treats.  Sounds pretty reasonable to me.

Here’s my sugar regimen: No to pop, high fructose corn syrup, and packaged baked goods.  Yes to jumbo bags of Reese’s Pieces a couple times a year at the movies, and baking Martha Stewart and my mom’s recipes for cakes, pies, cobblers, and tarts -  I cut the sugar in half or even less and it tastes better!

Have you ever been freaked out that sugar is going to cause your cancer to grow?  Have you ever ditched sugar?  Do you feel better when you don’t eat it?

To learn more about evidence-based complementary and alternative medicince read my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Post to Twitter Post to Facebook

9 comments
August 10, 2009

John Hughes, Molly Ringwald, and My Cancer

breakfastclub

I wanted Molly Ringwald’s pout and strawberry hair in eight grade. But I wanted even more the epiphany moments she lived out as John Hughes’ characters. Whether a wallflower or a princess, by the end of every movie we got to see who Samantha, Claire and Andie were, not who everyone else thought they should be.

Around the time I was in high school, watching Some Kinda Wonderful on VHS while making out with my best guy friend, cancer cells were growing in my neck. They weren’t detectable or diagnosed until I was 27. I’m now 36 and still living with cancer.

Over the past five years, I’ve been researching, writing, and had published my book on Gen X and Gen Y cancer. While hammering out my manuscript, I hung above my desk a quote that Anthony Michael Hall wrote in a letter to Mr. Vernon in the closing scene of the Breakfast Club. “You see us as you want to see us, in the simplest terms, in the most convenient definitions.”

That’s how I feel every time I see cancer patients in a movie, on the news, or plastered on a poster. Victorious cancer jocks, mountain climbers, and movie stars help raise money and awareness. But these survivorship images also create a stereotype of young adult cancer patients. We are seen as vocal, outspoken, sassy, sexy, insightful, spiritual, grateful, and empowered.

As a patient, I wanted to be freed of these limiting descriptors and perceptions. I wanted to lock up myself and a few other cancer patients in a metaphoric library for Saturday detention and get to the bottom of it all. As I wrote in my book, “I wanted to reveal who we are, not in simple definitions but in the complexities of our real daily lives: what we think about while lying in bed at night; what we wish we could tell our lovers but are too afraid to; the ways in which we feel vulnerable, tender, and utterly uncertain what to do with ourselves; the times when cancer is not a fight but just a hard circumstance with which to live.”

I never got to be Molly in eight grade. But I kinda get to be her now in moments that are akin to the cheesiness of Samantha kissing Jake or Clair kissing Judd Nelson. This is how I feel every time I sit down and talk to a cancer patient who is fat, a junkie, suicidal, addicted to exercise, scared to go back to work, hasn’t had sex in five years, or is confused about their faith in God. These images are also not all of who we are, but I consider it a glory moment when the underdog sides of our cancer selves get the spotlight for a few minutes, or a few phone conversations, or a few chapter of a book. Cue the Thompson Twins. Thanks for the inspiration John.

Have you ever felt like there is a stereotype for what a cancer survivor should look or sound like? An expectation of what strength or fighting should look like? Were you ever obsessed with John Hughes movies?  Which was your favorite?

For more moments from the metaphoric cancer detention library, check out my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Post to Twitter Post to Facebook

10 comments
August 06, 2009

Got any tips and tricks for cancer brain fog?

highlighters

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.

Post to Twitter Post to Facebook

12 comments