December 15, 2009

Do You Pay Attention To Survival Rates?

survival-rates

One of the most heart wrenching days of my life came after my first surgery when I learned I had a rare disease variant of my cancer.  It tanked my survival rate an extra 20%.   I felt like someone was yanking my heart through my nostrils.  Years later, a subsequent pathology report showed no evidence of the rare disease variant.  Poof, I was jacked back up to the normal papillary thyroid cancer statistics – which are damn high.  I don’t know what made the variant disappear but I’m extremely grateful.

I love this quote from Rick Gribenas in my book Everything Changes: “Ambiguity is more real than a prescribed prognosis, which is complete crap.  If there’s an 80% chance of this, or a 20% chance of that, it’s still a chance.  Who knows which percentage I’ll fall into?”

I agree that you have no way of knowing which percentage you’ll fall into, but I still want to know my prognosis.  In my mind, not knowing my odds harkens back to the days when doctors refused to tell patients of their prognosis because they didn’t think we could handle the truth.  (I’m sure there are still a few docs who think this way.)

I want to prepare myself for the odds, even though I don’t know which side of them I will be on.  The danger in this for me is that I’m a hypochondriac freak and if my odds were crummy, it would be hard for those numbers to not rule my life.  On the other hand, when I recently learned that my odds of my cancer metastasizing to my lungs, brain, and bones were lower than I expected, it brought me great peace of mind and I was glad to know the numbers.

It irks me when people say “a number is a number” or “I’m not a statistic.”  I feel like those phrases trash science and I’m a big fan of science.  Statistics represent a lot of information that can help navigate our choices in how we treat our diseases.   I think it’s possible to simultaneously look at our health in terms of statistics and live as fully emotional beings.

My prognosis is good so I’m sitting in a pretty cozy space to make these judgment calls about wanting to know my stats.  Maybe this whole post would read a lot differently if my numbers sucked.

Do you want to know your survival rates?  How do you mentally contain that information?

Ric is is a brilliant and philosphical patient.  Read more about him in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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December 11, 2009

Testicles: Take’em or Leave’em?

beach-balls

If a guy I was sexually active with were missing a ball it would take me a while to figure it out.  Seriously.  For me, they’re not the main attraction down there nor do they have a gigantic space in between like breasts, which allow you to focus so specifically on the left or right. If both balls were missing it would be much more apparent.  I’ve never been in this situation, so I can only speculate, but I don’t think it would change my sex life much if my guy were missing one or both balls.  Sure, I’d have to get used to their absence, but it wouldn’t change my level of attraction or satisfaction if they were missing.  (Apologies in advance to my husband for whom this might be a weird post to read!)

I got a great comment from a testicular cancer patient on my post about missing body parts: “I couldn’t get a prosthesis at the time I lost righty so I proceeded to live the ensuing twelve years without. Dating was difficult and awkward, not because partners might be scared off but because I feared they would be. Any man will tell you that anxiety and fear are huge mood-killers where sex is concerned.”

When I hear guys talk about their anxieties about being ball-less I want to tell them ‘My life would be fine without balls. Really!’   But the guy who commented raises a good point that even if the partner didn’t care, he still had anxiety about it.  Cancer and body images issues go a lot deeper than what other people think of our bodies.  It’s how we think about ourselves that matters as much if not more.

Maybe I’m easy going on the missing body parts issue because I have empathy for fellow cancer patients.  However, I don’t think that’s the case with balls.  I wanted to do some research to find out if I as a sexual  partner I’m alone in my thinking of ‘balls, take’em or leave’em.’  But, I couldn’t find the right combination of keywords to google that would yield good results rather than immature dialogue or raunchy sites. So I’d love to have an honest conversation about balls on my site instead:

If you are a straight gal or gay guy, how would you react to a partner missing one or both balls?  Would it change your sexual experience?  If you’re a testicular cancer patient, has it changed your body image and/or sex life to have one or both testicles removed? Remember you can comment anonymously.


Brian Lobel is a witty and super-intelligent testicular cancer survivor.  Read about him in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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December 09, 2009

Living the Limbo Between Sick & Healthy?

limbo-cabin

Last week I started cleaning out my cancer closet.  This week I’m continuing the job.  In my filing cabinet, I discovered a list I made called 32 Ways To Spend My Time.  I wrote it while living in limbo-land after my first treatment.  I was well enough to get out of the house most days.  But I didn’t have enough reliable physical energy to start finding a job, get off disability, and tackle a normal work week.  I felt lazy, cabin fever stir-crazy, unproductive, and anxious to have a life again.  So I created a list of productive (and inexpensive) ways to spend my time.  My list included:

Update my address book * Visit my great uncle * Learn geography * Listen to new kinds of music * Find new and unusual museums to visit * Stretch * Reduce and donate my belongings * Do drop-in volunteer work * Find a dog that needs to be walked * Make thank you collages for people who had helped me out.

To other 28-year-olds, this list must have seemed elementary.  To me it was monumental and gave me purpose.  Many of the tasks on the list I could do even on days when I wasn’t feeling well.

When I interviewed young adult cancer patients for my book Everything Changes, the most frequent comment I heard was that life after treatment was the toughest part of the cancer experience.  After treatment is often the first time many of us have to stop and think about all that has just happened to us.  It was important for me to pay attention to these feelings, but I didn’t want to do it 24/7.  This list helped give me some focus and direction.  No matter how simple or how trivial the tasks, I needed to have a life outside of my sick bed.  How ironic that one of the items on my list was “Get a tape recorder, interview people, and make a project out of it.”

What was life like for you after a prolonged period of illness or treatment?  Did you find satisfying ways to spend your time?  Were you financially or physically limited by what you were able to do?  How did you handle it?

I got a tape recorder, interviewed people and made a project out of it called Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.  Check it out.

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December 07, 2009

Hiding Missing Body Parts or Covering Baldness?

mannequin

It isn’t couth, compassionate, or politically correct to ogle over a woman’s breasts, whether they come in a pair or not.  Standing around the food table at a house party last night, I tried but couldn’t help steal glances.  I loved that the woman across from me had the audacity to walk through the world with a cute boob on the right, and a pancake flat space on the left.

The woman with a mastectomy and no prosthesis turned out to be S.L. Wisenberg.  She’s the author of The Adventures of Cancer Bitch, a book I have seen on the shelf next to my book in many stores.  We spent most of the evening by each others side talking about exercise, book readings, cancer fundraising, pink washing, and more.  I adored her immediately.

I learned that during cancer treatment, she nixed bandanas and wigs, walking through the world bald with ‘U.S. Out of Iraq’ written on her naked skull.

I’ve never been faced with the decision of prosthetics or head coverings.  Nobody can tell that I’ve had my thyroid and 66 nodes removed.  My scar is so faint doctors often have to search for in during check ups.  And while my hair has thinned significantly, radio active iodine does not cause baldness or hair loss associated with other cancer treatments.

I don’t know what I would do were I forced to part with my perky boobs or my hair.  And it isn’t my place to speculate on such decisions.  I have learned that with cancer, you never know what choices you’d make until you are faced with the reality for yourself.  Since I cannot speak from experience, I’d like to hear yours.

Have you lost a body part, become disfigured, or lost your hair due to illness?  How did it impact yourself image and what choices did you make about reconstruction, prosthesis, and baldness?  Have you ever met someone with one breast who did not get reconstruction and chooses not to wear a prosthetic boob?

Read more about adapting to a new body image in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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December 04, 2009

How Has Your Identity As A Cancer Patient Changed?

200019728-001

It’s time to clean out my cancer closet.  Between living with cancer for nine years and researching and writing a book on young adult cancer for five years, I’ve accumulated an abundance of oncology articles, books, and magazines.

The task is more emotional than I anticipated.  Lodged in my collection of scientific data are notes I scribbled in the margins, like: “None of these stats apply to me. Is it time to abandon Western medicine?” I’m still am not cured.  Thankfully I have learned how to manage my cancer better now than when I wrote that note.  None the less, it’s sad reading my paper trail of desperation.

It’s hard getting rid of my books on palliative and end of life care.  They were invaluable in helping me write resource sections for Everything Changes.  A loud voice says, “Hang on to these Kairol, you might need them someday for your own care.”  Cleaning my cancer closet is highlighting that over the past two years, I’ve come to expect that I am going to get a secondary form of cancer.  I hope I am wrong.  I don’t get worked up about it.  But it’s a thought I can’t shake.

Some survivors make scrapbooks about their treatment.  When I last  moved apartments, I culled my collection of get well cards from a  mountainous box to one manila envelop. I might even want to ditch that now too.  Over time, I cling less to my cancer memorabilia.  Yet, I still commemorate my cancer care almost daily through my writing.

I like my perspectives on cancer care.  I want to continue blogging, writing columns, speaking, and working on special projects with organizations. But lately I’m making a shift from having two feet in the cancer world to one foot in and one foot out.  For example, at the end of this month, I’m stepping down as co-host on The Stupid Cancer Show.

My identity as a cancer patient is shifting.  It isn’t easy.  But it is good.  Growing pains are better than cancer pain.

How much do you want to remember you cancer care and how much do you want to move on?  Do you save research information or get well cards?  Do you ever anticipate getting a secondary form of cancer?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn how Geoff’s identity changed as a 13 year survivor diagnosed at 22.

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December 02, 2009

Cancer and Nutrition: Trendy Scams or Smart Advice?

grocery-cart

I’d always thought of registered dietitians as women who sit behind a desk outside a cafeteria and tell you to drink Ensure and eat canned vegetables.  I recently I’ve learned how wrong I was.

Tons of chronically ill patients feel pressured, overwhelmed, and unhinged by all the healing diets that are thrown in our faces.   (Want some proof? Check out the comments on my post Are You Overwhelmed By Cancer and Diet Choices.)  I’m constantly wondering what’s smart and scientifically proven, and what is just trendy, a scam, or even a well meaning goose chase for the cure.  What about cleansing, eating raw, eating organic, and fasting?  How can cancer patients eat well if they don’t have three hours a day to cook or a bank account to pay for Whole Foods shopping?  And what about those of us who are really sick from treatment and can hardly eat let alone follow a strict diet?

At the beginning of my quest for info, I learned the difference between a nutritionist and a registered dietitian:  Anyone can call themselves a nutritionist – the label holds zero clout.  But RDs have graduate level training, understand science and chemistry, and sit for licensing exams.

So I started over the phone nutrition counseling with a Greta Macaire, an RD from my hospital.  Free, individualized counseling from someone who wasn’t trying to sell me a lifestyle, a product, or a workshop – I loved it!  Her practical recommendations gave me a sense of ease that no Lola Granola cancer diet has.

I wanted to share her advice with the rest of you.  So I had her on  the Stupid Cancer Show along with her colleague Natalie Ledesma and  Breastless in the City author Cathy Bueti.  I also reviewed on air Rebecca Katz’s new book The Cancer Fighting Kitchen, which is a must-have cookbook for learning how to cook and eat during treatment and after.  You can download for free the podcast from 11/16/09 Cancer and Nutrition Part 1- Finding Balance.  (The nutrition conversation starts at minute 24:00 if you want to fast forward.)

It’s been so helpful to have a trusted source dispel the myths about cancer and nutrition, and to give me simple, economical ways to support my body.  No quick-fix magic pills nor Ensure or canned veggies.  Just sound advice.

Have you ever used a registered dietitian? Is there sanity in your diet?  If so, how did you find it and from what sources?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more tips on how to save money and time as a cancer patient.

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November 30, 2009

What Anchors You When Life’s Out of Control?

patsy-cline

Soon into my cancer care, I somewhat unintentionally started developing small, mundane rituals around my house.

After my first surgery, I had a daily pattern.  When I could muster up the energy, I would sit in a warm bath and listen to Patsy Cline.  The bathroom was a world away from the rest of my studio apartment where my mom and I were living side by side.  Getting into the tub felt like a vacation, and a major accomplishment.  My world had become so small, so boring, so comparatively unproductive that taking my Patsy Cline bath everyday felt like a tangible accomplishment.

I typically despise routine, schedules, and predictability.  But so many things that I could formerly count on, like having a social life, working, paying bills, were thrown out the window when I became a young adult cancer patient.   I wanted just a shred of something I knew I could count on;  I needed to become a tame control freak.

During my second treatment, I instituted four hours of alone time each day.  I sent my mom packing, unplugged the phone, powered down my computer, and sat on the couch looking out the window.  I simply stared at the bare tree branches for four hours each day.  My mom probably thought I was totally depressed.  But I just needed time to myself.  It was my anchor.  Everyone around me had places to be at certain times – work, class, dates.  I needed a schedule to my day so I wasn’t just floating through the murkiness of unmarked time.

A lot of people I interviewed in Everything Changes had ways that they needed to spend time during and after their cancer.  Greg spent long stretches of time alone just working on his boat.  HollyAnna loved to go up to the mountains, sit, and watch the water flow down stream over rocks and stones.  When Wafa’a lived with her parents, she’d retreat to her room, lit candles, listened to Nina Simone, and read Milan Kundera.

Do you have any little rituals that get you through the hard times?  Have you ever felt compulsive about them?  Do you do them even during times when you are well?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how I coped with staying sane during cancer care.

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November 26, 2009

Do You Give Thanks for Your Illness?

thanksgiving-table

Before diving into their turkey, most families take time to go around the table and say what they are thankful for.  Not my family.  We are all about the food in the Rosenthal household and we always have been.

This doesn’t bother me.  I come from a very demonstrative family.  We express our gratitude on a regular basis, when it hits us in the moment.  We don’t store it all up for a once a year gratitude fest.

I do have a ton that I am grateful for in my life.  But cancer is not one of these things.  Cancer has lead me to become a less judgmental person.  I listen to others now in a way that I didn’t before.  It has also turned me into a writer.  But I feel pretty confident that I’ve always had the capacity to become a less judgmental person and a writer.  If it didn’t come out through cancer, it would have come out through another, hopefully less painful route.

A lot of survivors say that if given the choice they would chose to have cancer because they are grateful for the changes it has brought to their life.  In my book Everything Changes, I wrote about this issue at the end of my conversation with Greg, a young adult cancer patient in Alabama:

“Had good things come from my own cancer? Yes, talking to Greg in his truck was one of many, but I believed that I was a pretty decent and self-aware person who did not need this horrific experience to make me appreciate the world around me or my role in it. If people needed pain through which to learn life lessons (and I debated whether that was even true), opportunities to open oneself up to suffering abound, and it saddened me that most people do not make themselves vulnerable in this way until they have no other choice.”

My dog, my husband, my mom and dad, my father-in-law, my friends, my health insurance, and a roof over my head are on my list of things that I’m grateful for on a regular basis.  Cancer is not one of them.

What about you?  Is cancer on the list of things for which you give thanks?

Read other perspectives on cancer and gratitude in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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November 22, 2009

Your Advice to Someone Newly Diagnosed?

shinydiscoballs

When I was first diagnosed with cancer, everybody and their mother was telling me what to do, how to handle it.  Some advice was so off it made me want to stick my fingers in my ears and chant “blah, blah, blah” like a three year old.

This is one of many reasons why I wrote my book Everything Changes.  I wanted advice that didn’t make me regress to toddlerhood.  I wanted really smart advice that I hadn’t seen anywhere else.  I wasn’t finding it in other books or cards or tee shirts.  So I found it in long intimate conversations with other cancer patients.

The end of my five-hour conversation with Wafa’a really stuck out to me.  She described herself as always being hyper with fear, constantly on the run, going clubbing, to yoga, hanging out with friends.  (Yep, that gorgeous woman with the disco ball is Wafa’a.) And, she was a ball of energy in our conversation too – quite wise but loaded with freneticism.  And then at the end of our conversation, she busted out with this really calm, clear statement that blew me away.  Here it is:

“Right now, I just tell myself what I would tell anyone who just got diagnosed: It’s just one day at a time. Remember to breathe. 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. If you need denial right now to get through, do it. If you need to cry and feel it every day, do that, too. You’re not alone, no matter how alone you feel, and you will feel alone, ’cause you feel like you’re the only one going through it. And we are, because we’re all different in our own way. But there are people out there that can kind of understand, and when you’re ready, they’ll be there for you.”

I’m curious, if you were to give advice to someone who was recently diagnosed, what would you say?

Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s for more words of wisdom from Wafa’a.

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November 20, 2009

Young Women and The Breast Cancer Guidelines

pink-house

I’m disturbed that in recent conversation about breast cancer guidelines, I’ve not heard anybody asking the question: ‘What is the most effective way to lower breast cancer mortality rates in young women?’

Prior to this announcement, I’ve spoken with staffers from key organizations serving young women with BC (breast cancer). They told me they’ve never seen studies on whether breast self exams (BSE) lower mortality rates in young women. I’ve read articles in which policy analysts and scientists agree this needs to be studied.

Cancer is terrifying and it is down right frightening to have BSEs diminished as a guideline when they are the one thing we have come to think of as a hopeful solution for young women.  But instead of defending a tool about which we have little scientific information, why don’t we get motivated about researching what will save our lives?

I’ve heard tons of stories over the years about young women who’ve found their BC themselves and use this as justification in favor of BSE.  We do know that across every age group the majority of BC is first found by women touching their own bodies accidentally or intentionally.  Nobody is debating this fact.  However there is a world of difference between the two questions of: “Do women find lumps when they do BSE?” and “Does doing BSE lower the mortality rate in young women age 15-39?”

Stories are motivation to find answers, but they are not the answers themselves.  The reason we draft legislation and raise money with walk-a-thons and pink ribbons is to fund smart science to help us make the most effective choices about preventing, detecting, and treating BC in young women. I wish the $45 million in Representative Wasserman’s EARLY ACT was directed towards investigating how to best lower mortality rates in young women with BC.  Show me a piece of evidence saying that BSE in young adults lowers the mortality rates of 15 – 39 year olds, and that the benefits of this outweigh the harms, and I think we will have hit the jackpot on what we need to do to take care of our generation.  Until then, as a community we need to demand that young women be taken seriously, and that government dollars be spent on researching our diseases so we can find  the most EFFECTIVE ways to save lives.

Cathy Bueti, a breast cancer survivor and author of Breastless in the City says:

“Although I found my lump it was not from doing a monthly BSE.  I never consistently did them.  Even today I only get thorough breast exams  when I see my doctors twice a year.    If I did BSE I would be on the phone every month in a panic with the doctor.  Young adults have crazy hormones that can cause frequent changes in breast tissue.  BSE can lead to unnecessary biopsy and is not going to increase survival rates in young adults.  I was told the lump I found most likely was growing for 10 years so it did not ensure early detection in my case.  However, I do believe it is important to stay familiar with your breasts so if you do find something that was never there before you can followup on it.”

As patients it is our obligation to know about breast cancer guidelines from scientific perspectives in addition to our own stories.  Here are some important links.  Read up!

U.S. Preventative Services Task Force (USPSTF) -  These are the folks who issued the guidelines and this link has their research and rationale.

National Breast Cancer Coalition Fund - These folks are an umbrella organization for a lot of other familiar cancer organizations.  This link takes you to a page where they discuss the needs and concerns about young women and breast cancer funding, research, and prevention.

Breast Cancer Action - These are some of the coolest gals in the breast cancer world.  This link talks about their take on mammograms in women age 40-49.  Yep, some of us in the YA cancer community are getting close 40!

Let me know what you think about whether young women’s voices have been included in this conversation.  Do you think we can move beyond anecdotal stories about young women with breast cancer and start investing in evidence based studies about how to reduce our mortality rates?

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