August 25, 2008

Survey says…S-E-X!

Doing the nasty is not something that oncology doctors and nurses like to talk about. They are happier sticking to white blood cells counts and pet scans. Are most embarrassed to talk about sex? Yes. Are most grossly undereducated about cancer and sex? Yes. Do many docs think you should simply be happy to be alive and sex is just the metaphoric cherry on the top? Yes. Well…. Screw that.

I have recently begun a dialogue with Paul Joannides, author of the best selling Guide To Getting It On. For the next edition of his book he is expanding a chapter about cancer and sex. Thank god someone cares! If you are looking for a completely anonymous way to vent about your cancer sex life, or maybe lack thereof, participate in his online Cancer and Sex Survey. In addition to dishing about your intimate life, you will be helping to smash the sex and cancer taboo and educate patients who follow in your footsteps. Have fun!

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August 22, 2008

When Hope is a Four Letter Word

It is hard not to succumb to peer pressure at sixteen when your cool friends are smoking on the back of the bus, swigging Boone’s Farm, or doing the nasty on the game room couch in their parents’ basement. “C’mon, just try it. It’s okay. Everybody is doing it.” But what about peer pressure when you are in your twenties and thirties and everyone around you is simply breathing, living life, planning for their future and you have end stage cancer? “C’mon, just keep going. You can do it. I know you want to,” your friends root. So how in this instance do you “Just say no”?

“Letting go.” This is more than just a cheesy affirmation when it comes to cancer. It is a euphemism for accepting your death. Jane E. Brody recently wrote an article in the New York Times titled In Cancer Therapy, There Is a Time to Treat and a Time to Let Go. Most interesting was a study revealing that last ditch chemo efforts do not stave off death. In fact, some doctors think that aggressive treatment at end stage cancer may actually hasten death. So why do patients stick to treatment when their days are so numbered? Brody discussed doctors’ emotional and even financial incentives for offering prolonged treatment, and dissected the question of how does a patient say enough is enough. I feel an additional reason that patients opt for prolonged treatment at end stage cancer is the massive peer pressure to stay alive that is put on patients by families, friends, and partners.

The 20 and 30-something cancer population’s patient enrollment in hospice is practically non-existent. I have sat on the beds and sofas of many young cancer patients and talked about the nitty gritty prospects of their death. Screw the idea of living a few more minutes or a few days longer; they expected to live decades longer. Most of those who I spoke with were aching to talk to me about the end of their life. The challenge for many was not in facing the end for themselves. The difficulty was in not being able to express their thoughts and ideas to friends and family, who lovingly and relentlessly cheered them on from the sidelines to kick cancer’s ass, as though they were super heroes instead of mortal beings facing the tremendous task of accepting death.

The question of when to “let go” is one that is strongly influenced by a circle of people surrounding the patient. Have any of you tried to speak with your friends and family about your death? And if so, how did it go?

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August 18, 2008

Swank Survivor’s Guilt

This ain’t no chintzy coffee table plug-in ‘Zen’ waterfall from Walgreen’s. Located behind the nurses’ desk in the waiting room at my most recent check up was a six-foot wall of black granite with sheets of water cascading into a pool. The sides of the wall were gold with cut out floral motifs. It goes to show, you don’t have to be a Rockefeller to have a cancer check up at the Rockefeller Outpatient Pavilion at Memorial Sloan Kettering.

I was whisked away to my own private changing room. Gold framed mirror. Wicker hamper for the used gowns. A plush pillow top upholstered bench for me to curl up on while I waited. In the exam room the lights were low and Enya emanated from a computer in the corner. Where was my sangria and Thai massage?

I have never understood survivor’s guilt; I’m damn happy to be alive. But I do have swank ultrasound guilt. I have had ultrasounds in rooms with needle wrappers and used bandages littering the floor. I have had ultrasounds in rooms so tiny, not all the doctors could fit in. I have had ultrasounds where the waiting room, bursting at the seams, had more patients than chairs. And the worst: I have had ultrasounds where I sat side by side in the waiting room with bald little kids in Lone Ranger PJ’s waiting their turn.

Some people I interviewed in my book loved being around the kids’ side of cancer. The children were to them bright, happy, and inspirational. For me seeing the cancer kids broke my heart. I don’t mind being brokenhearted over someone else’s sorrow – after all isn’t exposing ourselves to sorrow what best teaches us to be compassionate? But when I am waiting for my own ultrasound to see if the tumors on my jugular have grown, my heart is already breaking over me.

I wanted to hate this ritzy Rockefeller cancer center. To bash it for boasting such decadent décor when there are people in this country who are dying because they could not afford to get to a doctor to diagnose their cancer before it has spread to bones and livers and lungs. I wanted to slam the water fountain and the wicker, the bourgeois vibe to the whole damn experience. But I did not. Instead I was just thankful that in the midst of my nail biting angst, there were no kids. My heart got to break spa style and I soaked it up entirely.

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August 12, 2008

Head Of The Class or Head Up Your Ass?

Piece of cake. A tiny pinch. My first ever biopsy hardly hurt. Were the cancer gods showering me with mercy? No. The doctor screwed it up. He had not plunged the needle in far enough to suck up the cancerous cells. What he thought to be a benign cyst, I six months later learned was 1 of 19 positive tumors floating around in my neck.

Doctors: Screw up your billing, screw up your taxes, but do not screw up when diagnosing my cancer. How could a doctor of his age and experience make such a mistake and why is there not a system in place to assure that doctors are still performing at the top of their game?

In the United States medical licensure sets minimum competency requirements and is a one-time event in the career of an MD. In addition to licensure, doctors can choose to become Board Certified, which necessitates completing a stringent and rigorous exam process every six to ten years depending on your specialty. Remember though, Board Certification is VOLUNTARY, and not required of doctors. It is the extra credit, the gold star on the forehead.

I think they have a better idea going on across the pond. The Brits have recently announced that every five years, ALL doctors will have to show they are competent to practice. If not, they will be disbarred. But wait there is more…as part of this five-year review, patients will also evaluate the doctors’ communications skills and how well they engage patients in treatment decisions.

Brilliant, if we had such a system in place in the U.S. perhaps we could differentiate the doctors who are the head of the class from those with their heads up their ass. Airline pilots undergo continual retesting. Shouldn’t doctors too? Until the time that we follow Britain’s lead, any time you are you searching for a doctor, find a Board Certified doctor. After all, this is your life we are talking about.

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August 09, 2008

Red Star On Your Calendar

Answer: Eating pork belly and charcuterie at Blackbird. Question: Do you celebrate anniversaries in any particular way? The question was recently asked by a blogger on Planet Cancer, and while she was referring to my cancer anniversary, my husband Shannon and I did celebrate our wedding anniversary three days ago at blackbird, so I’ll pontificate on that first… and then on my cancer anniversary.

In addition to being Hiroshima Day, August 6th is also my wedding anniversary. We got hitched that day because it jived with the calendars of a rabbi (who we ended up not using) and our favorite swing band. So why celebrate that day when there are other memorable firsts we could celebrate? First date, first kiss, first time we had sex, the day we moved in together. We spend every day head over heels in love with each other. (Sappy but true, and kind of the idea of marrying someone right?) So, what’s the point in celebrating a wedding anniversary at all then? As far as we can figure out, we celebrate our anniversary because it is the one day a year we can justify blowing a lot of money on dinner at Blackbird.

A cancer anniversary is just as random. (I think mine was on September 7, 2000, but don’t quote me; the entire event rewired my brain and dates are now forever out of order in my mind.) That day just happened to be the date that the lab sent my test results back to the dingy doctor’s office on Pill Hill in Oakland – whom I never visited again. So what? If there were a three-day weekend, or the secretary misplaced the results, I could have easily had a cancer anniversary of September 9 or 12.

Most docs say my cancer began growing in me as far back as ten years earlier. That would have made me a 17-year old geeky-punk rock-hippie girl graduating from Taylor Allderdice High School in Pittsburgh. Should I celebrate that as my cancer anniversary? Or should I celebrate my first radiation, or my recurrence date, or the day I received a $9,000 disability check?

And why celebrate a cancer anniversary anyway? Some cancer patients look at it as a time to reflect and be thankful to friends and family. If you need one day a year to remind you to be grateful – well, frankly that’s kinda sad. I’m grateful all the time for my friends and family, and cancer didn’t do that to me. My parents did. They raised me to be an appreciative person. I think they did a nice job.

So screw monumentalism, the big bang of cancer, the moment in my life that the guy in the back of the orchestra finally crashed the cymbals. My guess is that the whole concept of a cancer anniversary was really just created by Hallmark and I’m sure they will start selling cards for it soon. I’ll take pork belly and charcuterie to remember my wedding anniversary, but as for this cancer anniversary business, I think I’ll pass.

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August 07, 2008

Flat As A Pancake

Flat as a pancake, cows, and corn. I don’t usually boast about living in Illinois, but today I am proud. Despite his follies, our Governor, Rod Blagojevich, improved a bill that will hugely impact young adults in their twenties and thirties and should serve as an example to other states that are looking for band-aid fixes to our failed health insurance system.

Before dousing you with legislative lingo, I want to tell a story about Dana Merk, an AML patient, who I write about in my book. Dana was given the boot from her college’s health insurance when she took a leave of absence from school. Did Dana take a semester off for soul searching in Europe? Nope. Dana left school to receive inpatient chemotherapy of her leukemia. Yes, you heard me right. Her insurance company took away her insurance because she left school for cancer treatment. How is she still alive? Her friends and family threw bowling fundraisers.

So yes, it is a big deal and affects real people’s lives when states propose legislation such as Illinois House Bill 5285. It allows college students to stay on their parents’ heath insurance for a year, or until the plan would have ended, if they take a medical leave of absence or reduce to part-time because of an illness or injury. Brilliant.

BUT WAIT IT GETS EVEN BETTER: Yesterday, the Governor made an addition to the bill that would allow the option for parents to keep their kids on their health insurance until they are 26 years old, or 30 years old if their kid is a veteran.

This will make a huge impact on young adult cancer survival rates. Why? Peds and geezers have seen a steady improvement in their cancer survival rates over the last 30 years but twenty and thirty somethings have not. We are the largest group of uninsured adults in the U.S. Because of our lack of health insurance, we are diagnosed at later more advanced stages.

Want to save some lives? For the time being, forget racing for the cure; instead advocate for a bill! If you live in Illinois contact Campaign for Better Health Care to learn about how to take effective action to get this bill passed. And if you live in the Diaspora, get off your butt and find out what you can do in your state to promote legislation that will save young adult lives.

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July 21, 2008

Keep Your Eyes On The Slides

The discovery in Canada of an extremely large margin of error in reading breast cancer pathology slides and the subsequent preventable deaths that occurred have lead to public outrage and the demand for national standards. But don’t think that misreading of pathology slides is only a problem that can occur up north in the land of socialized medicine. The financial push behind our cost controlled medical system in the U.S. doesn’t exactly incentivize long, thoughtful, diligent behavior in any other part of our care, so why would the laboratory be an exception?

As the bad-ass, proactive, young adult cancer patient I hope you are, my guess is you grill your oncologists and radiologists, but how about raking your pathologist over the coals? If you look closely on your medical record you might see typed in the corner the name of the white lab coat clad pathologist who was huddling over a microscope determining the future of your life, but that is as close as we get to meeting “the man” behind the curtain. Well, I say screw that.

Demand a second opinion on your pathology when the results seem to not fit the pattern of your disease or leave your doctors scratching their heads. Perhaps your insurance or medical care coverage will balk at the expenses at first, but you just might win using the good argument that pathology is what determines how much treatment and surgery you need and you may save them bundles in the long run.

If you cannot get a second opinion from the pathologist, at least have your doctor talk to the pathologist, live on the phone. I asked a doctor to do this once for me and strangely enough when they took a second look they decided well, maybe he would actually classify the cell type differently.

Reporter Allison Gandey wrote an article on the Canadian crisis in which she interviewed Jared Schwartz, MD, president of the College of American Pathologists. He asked this question for oncologists: “Do you know who is examining and interpreting your pathology?” In Gandey’s article Dr. Schwartz suggests that doctors adopt a more collaborative approach and work more closely with one another. “You have to have a relationship with the person looking at that slide. And clinicians, like patients, should have the ability to request a second opinion.”

For a brief, cliff notes-like lowdown on pathology, visit the National Cancer Institute website and read Pathology Reports: Questions and Answers.

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July 17, 2008

Senile at 35?

See my picture below from the NY Times. “Pills” scrawled in lipstick on my mirror was not a cute styling touch for a photo shoot. I have pill reminders written above every sink in my house, taped to my washing machine, and next to the front door. The heart is a reminder to be kind to myself and not head down the path of feeling like an 85 year old with dementia.

My memory sucks. Is it from treatment, or the compounded stress of having cancer for seven years, or from my medically induced extreme hyperthyroidism? In traveling throughout the U.S. and interviewing 20 and 30 –something cancer patients for my book Everything Changes, one of the greatest comforts was in meeting other young adults who made me feel like less of a freak. Their hot young minds were also like a sieve. They too were unable to retain what they read in books, needed post-it notes to remember they had a job interview, and forgot simple words like the name of their sister.

Having my young mind disintegrate screws with my self-esteem. Getting a master’s degree or my Ph.D seems an impossibility when I can hardly retain the content of a book review from the Sunday Times. Last night the word rabbis leaped out of my mouth instead of rabbits. “There are a ton of rabbis tonight in the alley behind our house.” When I fumble in front of my husband Shannon we roar; when it happens with friends or in professional situations I want to crawl under the table.

My doctors could not have cared less about my memory challenges. Is it because they think I should just be glad to be alive, or because if they don’t have medical nomenclature for “chemo brain” then my experience simply does not exist? If it is the later then perhaps we are finally in luck.

I read today that researchers at the University of Michigan are beginning to study chemo brain in women with breast cancer. They will compare MRIs of three groups of women: those with breast cancer on chemo, those with breast cancer not being treated with chemo, and women without breast cancer. I eagerly await the results of these studies. Perhaps they can publish them on a series of post-it notes.

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July 10, 2008

An Unnecessary Balm? – Kairol in the NYTimes

I’m featured in today’s New York Times Skin Deep column, red faced and all, discussing high-end skin care products designed for cancer patients. The article asks are they ethical or just preying on the misfortune of cancer patients, luring them with pretty packaging and promises?

Treatment side effects can range from caustic farts cured by Gas-X to life threatening neutropenia that can land your ass in the hospital for weeks at a time. So when the cure for a side effect like blotchey, rashy, or burnt skin is counteracted by Lindi Skins’s charming facial serum in petite, periwinkle, Swiss spa like packaging, well it makes you feel like a queen instead of a cancer patient.

A 1oz. bottle of Lindi Skin face serum is $40 – the equivalent of two office visit co-pays on my health insurance. Lindi Snider defends the price of her products: “It’s sort of like saying, ‘Why isn’t chemo free?’” Well Lindi that is a freaking fantastic question. Maybe it should be. And do you really want to compare the cost of your product to the inflated price of drugs that are sending families into economic chaos? A Harvard research study found that “every 30 seconds in the United States someone files for bankruptcy in the aftermath of a serious health problem.”

Your face serum feels like silk, but when my free samples are gone, my wallet and my conscience will lead me to my kitchen cupboard for a good homemade olive oil and sugar scrub. Here’s one young adult cancer consumer you cannot sucker with periwinkle packaging.

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July 08, 2008

Cancer: The iPod Version

This just out today: Guys dishing about ejaculation and treatment. Sam from the SAM Fund revealing her staggering $287,000 surgeon’s bill. It is finally here – from the Lance Armstrong Foundation, a video podcast series for young adults living with cancer. From the get-go there is no confusing this with a geriatric cancer power point presentation; the opening credits look like they were pirated straight from an iPod commercial. Thirteen podcasts are 5-7 minutes long each and cover issues like work, school, dating, sexuality, even fear of dying. (Death and cancer? Few are brave enough to mention those two in the same breath these days, let alone when talking about us young darlings of the cancer world. LAF gets it – we croak too.) While the hosts of each video sound a tad scripted and stiff, nothing about these videos are clinical or pedantic. Check them out. Let me know what you think.

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