Everything Changes - The Guide to Young Adult Cancer

Imagine this: You have a hacking cough that won’t go away. You try extra sleep, Nyquil, breathing steam, and Halls. This goes on for six months, yet you don’t see a doctor - not because you don’t want to, but you just graduated from the University of Maryland, are working an internship at a local newspaper, plus a part-time job at Office Depot. You don’t have health insurance.

But wait. You DO have health insurance. We ALL have health insurance. It is called an emergency room. Just think, you could saunter up to your local ER and spend eight hours waiting to see a doctor who you’ve never seen before and will never see again. Will he or she accurately diagnose you with Hodgkin lymphoma? Who knows, but who cares? After all not only is the ER free, but it is a perfect place to catch up on soaps, learn from other ER patients how not to peel garlic with a knife, and get triage tips for gun shot wounds.

Does this sound like effective insurance to you? It does if you are John Goodman, who is healthcare policy side kick to John McCain and president of the conservative think tank the National Center for Policy Analysis. An article in today’s Dallas Morning News by Jason Roberson states:

“Mr. Goodman, who helped craft Sen. John McCain’s health care policy, said anyone with access to an emergency room effectively has insurance…

‘So I have a solution. And it will cost not one thin dime,’ Mr. Goodman said. ‘The next president of the United States should sign an executive order requiring the Census Bureau to cease and desist from describing any American – even illegal aliens – as uninsured. Instead, the bureau should categorize people according to the likely source of payment should they need care.’

‘So, there you have it. Voila! Problem solved.’”

Voila, there you have it, Mr. Goodman is an idiot and John McCain is a fool. Emergency rooms are not an effective form of insurance. While writing my book Everything Changes, I spoke with a young adult cancer patient named Seth, who at various points during his lymphoma used the ER to receive his care because he was uninsured. Mr. Goodman, could you sleep at night knowing your loved ones are using the ER as “effective” insurance? I think not. Readers, did you think that who you vote for President doesn’t matter? Well think again.

Have you or someone you know ever been uninsured? And how do you feel about McCain’s advisor’s proposal to coin use of the ER as “effective insurance”?

Michigan. University of Illinois. Harvard. My friends proudly wear their college names plastered to their chest. I’ve never felt that much pride for my three undergrad colleges. (Yes, count’em three – can you say transfer student? I have a hard time making up my mind.) George Washington University was a major mistake, while Columbia University was a fantastic incubator for critical thought, and Naropa University, the Buddhist College with under 1,000 students nestled in the foothills of the Rockies, was the kind of place where you learn not just about your major but about how to live your life as a decent human being. Still, I’ve got no place on my chest for these institutions of higher learning. Instead I want emblazoned on my T-shirts ‘Memorial Sloan Kettering’.

UCSF. University of Chicago. Northwestern Memorial Hospital. Memorial Sloan Kettering. (Yes, count’em four – I’ve been treated for my cancer at four different hospitals.) It is not that I had a hard time making up my mind where to go. It is that I am a young adult cancer patient. I was uninsured, moved states, switched insurance, got married. Plus, I scrutinize the hell out of every institution and doctor I see to ensure the best treatment at each phase of my disease. So why does Memorial Sloan Kettering (MSK) win the prize? Read on.

Yesterday I read a New York Times article by Gardiner Harris entitled Stanford to Limit Drug Maker Financing. It stated:

“Nearly all doctors in the country must take annual refresher courses that drug makers have long paid for. While the industry says its money is intended solely to keep doctors up to date, critics charge that companies agree to support only classes that promote their products.

On Tuesday, Stanford plans to announce that it will no longer let drug and device companies specify which courses they wish to finance. Instead, companies will be asked to contribute only to a school wide pool of money that can be used for any class, even ones that never mention a company’s products.”

Way to go Stanford but bigger way to go to Memorial Sloan Kettering. Forget Standford’s school wide pool. MSK is the only institution mentioned that has banned ALL industry funding for its doctor classes. I am proud that when my doctors obtain education that influences the medical decisions they make about my cancer treatment, they are doing so based on classroom discourse that is untainted by the pharma podium. It might be stretching it to say that MSK has earned a place in my heart, but they are the institution of higher learning that has certainly won a place on my T-shirt.

And you? Would you ever wear a hospital’s name on your chest? Why or why not?

In high school, college, even now, I shudder with guilt when I spy a Breast Self Exam (BSE) placard hanging in my friends’ bathrooms. I never do it; I never feel myself up. Yes me, champion cancer patient and advocate. It never occurs to me except for when I’m in a friend’s bathroom and it seems all too complicated to shed my sweater and bra and go to town when I’ve really just run in for a quick pee.

Much to my surprise, when I confessed this three years ago to my general practitioner, instead of raking me over the coals, he said, “Oh no worries, don’t waste your time. A large study, the Cochrane Review, conducted on women in China, shows that BSEs do not impact survival rates.” He explained if a malignant lump is large enough to detect with your hand you are as screwed as if you had waited longer for it to be found by some other method. Plus, the high rate of false positive biopsies of lumps found in BSEs not only cost a bundle, and tax the healthcare system, but the procedure can cause physiological complications to the breast.

I was off the hook and glad for it. I have since learned that based on the Cochrane Review, The American Cancer Society, Canadian Cancer Society, the World Health Organization, the US Preventive Services Task Force, and the UK National Health Services are no longer recommending monthly BSEs.

Well, I thought I was off the hook until today when I spied an article reigniting the controversy. Opponents of the Cochrane study include Breast Cancer Action (the fantastic organization that created the Think Before You Pink Campaign) and The Boston Women’s Health Book Collective (authors Our Bodies Ourselves - who didn’t have a copy of that in college? How can the Our Bodies Ourselves ladies be wrong?)

A blog posting by Rachel Walden on ourbodiesourselvesblog.org states: “Despite concluding that ‘screening by breast self-examination or physical examination cannot be recommended,’ the Cochrane review authors note that ‘Women should, however, be aware of any breast changes..’ and should ‘be encouraged to seek medical advice if they detect any change in their breasts that may be breast cancer.’ It is not clear how women are to be aware of any breast changes without doing self-exams. Another potential limitation of the review is the limited information on how the conclusion might apply to other populations, such as women in the U.S.” Good point Rachel, but could this also be a boilerplate legal disclaimer designed to protect the authors of the study?

American researcher Mark Kane Goldstein, PhD, who worked with support of the National Cancer Institute to identify and validate the standards for proficient breast examination, said in an interview with Medscape Oncology: “It is hard to determine whether a single procedure can affect longevity, so it is difficult to come to clear conclusions about the effect of breast self-exams on survival,” he said. “There are too many variables in these types of studies to isolate just 1 for an outcome such as mortality.”

Other advocates of BSE defend that when given proper training women have been taught to find 3mm lesions in their own breasts, and shouldn’t women assert some modicum of control for their own health?

To feel or not to feel? That is the question. I’m still deciding and would like to know, which side of the breast war are you on and why?

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!

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?

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.

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.

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.

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.