Everything Changes - The Guide to Young Adult Cancer

Forget the ball in Time Square.  My favorite part of New Year’s is talking stalk of the past 365 days.   I’m curious about your best and worst of 2009.  A fan of delayed gratification, I’ll save my best for last:

#1 Sucky Times: My worst moments of 2009 were around illness.  But not only mine.  I spent a lot of time in the hospital with a close family member.  It was totally new for me to be a caregiver instead of a patient.  They both suck.

#2 Pissed Off and Outraged: In 2009, my blood boiled over the slanted reporting about the public option, and watching the cancer community totally skirt healthcare reform issues, doing next to nothing to advocate for us.  How are any of us going to answer to our grandchildren about sitting by and watching tens of thousands of cancer patients die each year because of lack of access to care?

#3 Ass Kicking in Congress: My friend Lisa Friedman and I spent a day pounding down the doors of Congress this past spring, meeting with legislative aides, and having a fantastic talk with Kennedy’s folks.  Young adult health care was our focus and we rocked.

#4 Mission Accomplished:  I spent five years researching and writing Everything Changes.  In February it hit the shelves of bookstores throughout the U.S., Canada, Australia, and the UK. I especially loved walking into Barnes and Nobel in Union Square in New York City and seeing it prominently displayed as a special pic read.

#5 Dream Come True: I don’t really have idols -well,  except for Terry Gross. I’ve always dreamed of being a guest on Fresh Air.  I soared with happiness after spending an hour and a half in an NPR studio recording an interview with her about young adult cancer that aired in September.

#6 Everything Changes:  Two weeks ago, I had one of the best check ups out of my entire nine year career as a thyroid cancer patient.  I sometimes have a hard time trusting good news.  (Note to self to write a post about that.)  But this time I have really soaked it up and am incredibly grateful. Though I hope I don’t jinx myself by writing this!

What were your highs and lows of 2009?  Gimme your laundry list.

If you haven’t yet read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s – you don’t have to go to Union Square to get it.  Go to any bookstore or just click here!

I am a huge daydreamer.  My mind is a separate universe with lots – sometimes too much - going on in it.  This can be really helpful when I want to vanish from a situation that I am unable to actually physically escape from.

This seems like a good topic to talk about now, either for those of you who need a mental vacation from illness, or a mental getaway from too much family togetherness around the holidays.

When I am laying on a table getting ultrasounds, I choreography ballets in my mind.  I also love obsessing over the details of dinner parties – I plan menus, table settings, and fantasize about floral arrangements.  I’m also quite addicted to mental wedding planning.  It’s all pretty girlie, I know.  My own wedding got me through a years worth of cancer scans, and now I have moved on to making mental schemes about my friends weddings too.  (Congratulations Dan and Sara on your engagement!)

When I am waiting for test results or anxious about new symptoms occurring in my body, I zone out on apartmenttherapy.com.  It is heaven online.  I am also really into looking at the furniture listings on craigslist.

Without my vivid imagination and ability to totally check out when needed, I think I would have had a serious mental breakdown by now.

Do you daydream when you are stressed out, need to escape your surroundings, or get a break from medical hell or too much family time?  Where does your mind go?

Learn about Greg’s boat building daydreams in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

I was asked to write a guest blog post for Dear Thyroid about having cancer around the holidays.  But being an atheist-Jew, I truly was at a loss for words. I had to pass. This is just not a subject I know much about.

So I thought I would turn it over to you guys to educate me a bit more about what the holidays hold in store for anyone who is facing illness.  Have at it.  Leave a comment with stories, kvetching, tips, rants, or good memories about what it is like to be sick and dealing with:

Family, food, lethargy, expectations, looking like crap, feeling like crap, feeling great when others think you should feel like crap, travel, germs, sibling rivalry, office parties, being broke, being grateful to be alive, wondering if this is your last Christmas, being on chemo or in the middle of scans or treatments or staying in the hospital during X-mas, low-iodine diets during X-mas, feeling like a loser for not having New Years plans, not caring if you have New Year’s plans, or anything else your heart desires.  School me about illness and the holidays!

Learn more about how young adult cancer patients cope with family encounters in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

Excuse the type-os.  I’m exhausted from my huge nine month check-up yesterday in New York.  I’ve had cancer for nine years and I had never gone this long between appointments.

The fear started creeping up on me a few weeks ago.  I tried to tame it while letting myself freak out as needed.  I watched crappy movies, was moody, and ignored the world around me as best I could.  Cocooning helps me.

I didn’t tell many people about my upcoming appointment.   I liked not having a big build up. I know that people mean well when they tell me they’re praying for me, thinking of me, sending me good vibes.  But I don’t want this kind of support anymore.  And I was especially was glad to be rid of the people who tell me they know I’ll do fine.  (Really?!? How the hell do you know?) It’s nice to slink into the cancer center without the pressure of anyone’s expectations.

Being hush-hush calmed me down a bit.  For the first time ever, I managed not to bite off all of my fingernails; only my thumbs.  Still, fear gnawed away at me. For three days leading up to the trip, every time I closed my eyes, I saw the yellow flowers from the sheets on the bed where Shannon and I stay when we are in New York.  This morning, I had irrational, obsessive thoughts.  I felt like I had to make my bed or else I’d get bad results.  But, I didn’t want to give into this line of thinking and forced myself to leave the bed a mess.

My wait is over.  I had good news.  My tumors have not grown.  This is a tremendous relief.  I am happy, happy, happy.  And now, I’m biting off my fingernails.  Not because I’m anxious, but because I don’t have to hold myself together anymore.  Did you hear my huge sigh of relief?  It’s nice to come out of my cocoon with good news.

How do you cope with waiting?  Do you ever have totally irrational or obsessive thoughts or habits when you are burdened with fear or anxiety?  Do you find comfort in telling people you have an appointment coming up?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30 to learn how other young adult cancer patients handle fear and anxiety.

I’ll be on Sirius Doctor Radio today @ noon EST.  Want to listen but don’t subscribe? Just sign up for a free trial @   http://www.sirius.com/doctorradio .   Sirius 114 and XM 119 are the channels!

Call in with questions about young adult cancer and about thyroid cancer - NYU oncologists, endocrinologists, and I will be answereing questions, 1-877-698-3627.

Hope you’re having a good day…and if you’re not - remember Everything Changes!

Kairol

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.

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.

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.

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.

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.