January 15, 2010

Scared of Every Little Ache and Pain?


After going throuugh cancer treatment, you’d think that the small aches and pains of life – like having “the trots” as my grandmother would say – are no big deal.  Not for me.  Now, when I feel even the smallest pain, I flip out.

A few weeks before one of my big scans, I had a horrible upset stomach probably from something I ate.  I was on the toilet for hours in total panic mode: Sweat rained off my body onto the bathroom floor.  I was shaking so badly my feet sounded like they were tap dancing.  Logic left my mind and I felt like I was going through treatment all over again.

I try to go on the defensive at the first sign of an ache or pain.  I fight against wondering if my upset stomach is a long-term side effects surfacing or a secondary form of cancer.  I get logical telling myself that if I had a new form of cancer or a recurrence, I would probably have repeated symptoms not an isolated incident.

I pop a Tylenol, Advil, Pepto at the first sign of feeling sick.  If I squash the symptoms of small aches and pains, it helps to I curb my fears.  Prior to cancer I was little miss natural-homeopath.  I never even took Tylenol for fevers or headaches.  Now, I figure that after swallowing two enormous doses of radioactive iodine, my body probably considers over-the-counter drugs to be a walk in the park.

When I’m suddenly hit with a harsh stomach bug or I spike a fever, it’s xanax time.  It chills me out and keeps me from going to that illogical place of fear.  And I also try to talk to someone who gets it and isn’t going to make me feel like the hypochondriac I am.  I want someone soothing who is going to say, “Of course this is scary stuff.  After all, you’ve had cancer.”

Do you ever suffer from irrational fears when you feel aches and pains?  Where does your mind go and how do you bring it back?

To learn more about cancer, chronic illness, and post-traumatic stress, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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January 13, 2010

Patients For A Moment: The Down and Dirty Body


Sifting through the emotional, administrative, and financial trauma of dealing with illness, being sick ultimately all comes back to the body.  So for this installment of Patients for A Moment, we asked that bloggers submit posts about the down and dirty physical world of their disease.

Ever pulled a serious MacGyver providing your own home healthcare with saline solution and a turkey baster?  Duncan Cross has and writes about it in on the Duncan Cross post Duncan 1, Hospital 0.

“I guess if I had a choice, I’d rather wake up next to some ugly guy that I don’t remember meeting – not that, that has ever happened to me before – because it’s really bad when the party you don’t want to wake up next to is yourself…”  Need I say more about Leslie Rott’s post The Ultimate Coyote Ugly on her ever fantastic blog Getting Closer to Myself.

Most glossy doctors office disease brochures describe only the short list of limitations and side effects.  In Rheumatoid Arthritis:Disability Makes Things Difficult, RA Warrior Kelly Young lists the longer version of things you can’t do when your hands don’t work. It’s shocking.

The flip side of limitation is the day dreamy, anything goes fantasy life of that Fibro Mom creates on Fibro World in her Top 10 Things in a Perfect Fibromyalgia World.

From their nose to yours? School your co-workers in why they need to stay home when they’re sick with this  excellent primer Thank You, H1N1 Swine Flu from 21 year leukemia survivor Selena of Oh My Aches and Pains!

A shovel, knapsack, bowl of candy and diaper ointment. Not just for cancer patients, check out my post from last week Your 5 Must-Have Items from Surgery & Treatment Time?, along with over 200 reader suggestions.

Limitations, daydreams, MacGyver stories?  Leave’em in the comment section.  I’d love to hear.

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January 11, 2010

You Should Meet So and So – They Have Cancer Too!


Most people are psyched to play match maker between cancer patients, thinking if they know someone else with your kind of cancer, of course you’ll hit it off and become friends.  This is when phone numbers are given and the match making begins.

In Everything Changes, I wrote: “In my first six months of living with cancer, I received enough phone numbers of friends of friends with cancer to fill a small Rolodex. Picking up the phone and calling a complete stranger, twice my age, with cancer was just as appealing to me as calling the nice, single Jewish boy whose mother had met my mother at synagogue. It wasn’t going to happen.”

Sure, now I love talking to strangers about cancer, but I waited to do it when the time was right for me, and with patients whose values interested me.  Just because two people have cancer does not mean they have compatible values around medicine, treatment, or emotional styles and religious ways of coping.  Plus, I want to feel connected to the person about something other than cancer: I’ve met plenty of cancer patients who are just as crazy or unappealing as anyone else in the general public.  It’s all very much like internet dating.

I like Imerman Angels, an organization that matches “fighters” with “survivors”. They’re great yentas, taking into account things like if you’re a college student, parent, young adult, and the stage of your disease.  And, it can be nice to find someone to talk to because you want to, not because your very well meaning neighbor thinks you need it.

I love it when my phone number is given out to newly diagnosed patients.  I hope they will call, but I never expect them to.  I totally get that most people aren’t into the dial-a-stranger routine.

Did people try to do cancer match making with you? How did it go?  Do you like having direct contact with other patients or prefer more anonymous  communication, like reading blogs? What’s match making like if you have a rare form of cancer?

Check out Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about my cancer conversations with complete strangers.

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January 08, 2010

Smart Responses to Stupid Comments?


It’s frustrating and soul corroding when friends, family members, co-workers, even doctors shower you with stupid comments about your disease.    And it’s even worse to think of the perfect comeback three hours later when you are laying in bed.  Venting online with like minded patients about how we’d like to smack these people is all fine and dandy. But, I’m actually more interested in realistic responses that will make us feel better.

I’ve started trying to turn these situations around. Here’s an example: A friend recently said: “You gotta think positively and it will make your test results come out okay.”  I replied in a really nice tone: “I know, I hope everything is okay.  But did you know that studies show positive thinking doesn’t really impact cancer growth? I guess I usually just let myself feel nervous and then deal with the results when I get them.” She was surprised to learn this piece of information, became even more interested in what I was actually feeling and going through, and we had a cool conversation. So, here’s what I’ve learned to include in my comebacks.  I know this all may sounds a bit therapisty – so forgive me:

I get friendly instead of confrontational. Being a smart-ass only shuts the door. I think of my response as an invitation to more conversation, rather than a statement that will put someone in their place.

I try to teach them one thing about my life, my illness, or my reality. Not a lecture, but just one little nugget of info that helps them better understand what my life is actually like.

I start by saying something simple like: “Actually, that’s interesting I have the opposite experience…”

Does this work with everyone?  No.  There are some people I don’t have the energy or desire to deal with.  With these folks, I just note in my head, “This person’s so wacko I don’t really care what they have to say.”

What are there smartest, most useful responses that you’ve said (or could have said) to people’s stupid comments?  Am I full of it or do you think my ideas are actually applicable to situations you find yourself in?

Want to learn more especially about how to communicate with your docs?  Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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January 04, 2010

Hard Time Celebrating Good News?


I got good news at my doctor appointment three weeks ago.  I feel deeply relieved for the first time in almost a decade.  I’m rid of the 2 ton weight that has long been chained to my shoulders and I’ve stopped calling my mom with 4AM panic attacks.

In Everything Changes, I interviewed Nora, a lymphoma patient, who was talking about marking her progress during chemo: “ I don’t know if I ever really celebrated any of my good news.  Every time I get a good report I always feel like the hammer has just been held up a little while longer.  So it’s hard to celebrate. It’s just realism actually. I’m at higher risk for infertility, heart disease, lung cancer, leukemia.”

Feeling the relief of my recent good news is a first for me.  In nine years of cancer, I’ve rarely received news that merits celebration. Plus, as an uber educated patient, when I received somewhat good news, I understood that it often had a less favorable side to it. Also, I never wanted to build up my happiness only to have it shot down later. I’ll admit, I’m a pretty realistic person.  Meet my family and you’ll understand.  We’re loving gregarious folks, but looking on the bright side is not our forte.

Even with my recent news it has taken me a while to be able to unwind and feel it. The anxiety of waiting for scans and test results is like living in another universe. I need a reentry period. I cannot just flip a switch from scared shitless to clinking champagne glasses.

I know many patients who have worse prognoses than mine and have would have killed for my news even when it wasn’t all good.  During those times when I wasn’t able to celebrate, I was still aware of how fortunate I was.  I’m not big on guilt or enforced gratitude.  When I couldn’t celebrate my good news, I never forced myself to by comparing myself to others.  I’m always best off just being me.

I’m happy today, not because I’m a positive thinker or am trying to make the most of every moment, but because I’ve finally received news that warrants celebration.  I know I could push it away out of fear.  But this time, it actually makes sense to embrace it.

Have you ever received good news since your diagnosis? Do you have a hard time celebrating good news?

Learn more about how other patients react to news from their docs in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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December 28, 2009

Your Best and Worst Moments of 2009?


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!

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December 24, 2009

Where Do You Go on Mental Vacations?


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.

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December 21, 2009

School Me on Illness and The Holidays


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.

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December 18, 2009

How Do You Handle the Weight of Waiting?


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.

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December 16, 2009

Listen to Me Today on Doctor Radio


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!


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