Lose the small talk

A friend who owns a folk art gallery nearby gifted me with a wonderful hand-carved sign that cracked me up in her store recently. Since I found it hilarious (for multiple reasons), I thought I’d show it here, rather than try to describe it.

This sign would have spoken to me at any point in my life, I’m sure. But in the throes of a battle with cancer, the last thing I’ve been able to deal with for the past half year or more is “perky”.

Mind you, I’m not looking for somber and serious and deep all the time either. It’s just that in this condition, diversions aimed to take my mind off cancer haven’t soothed; they often simply annoyed me instead. And that just left me with guilt at being rude to friends wanting to help. The end result for me has been that I tend to withdraw into myself rather than actively push people away. All of which brings out needless worry in my friends... and the cycle goes on.

Laurie Todd, whose book I reviewed last summer, describes herself as “a nice, polite, caretaking gal” her whole life… until she underwent a mammoth fight for her life against appendix cancer and her health insurance company. She recorded this outgoing voicemail at the time: “If you are a doctor with the HMO, I would like very much for you to leave a message. If you are anybody else, I DON’T GIVE A RAT’S ASS!”

Other people I know have refused to take visits from people they were seemingly close to before their illness. And when they did allow others into the room, they sometimes shut them out with silence.

It’s hard to know what to do or say in the face of cancer. It dishes up more than its share of awkward moments. But it’s a good bet that perky can easily backfire.

And the beat goes on…

I’m returning from the Cancer Center, where I had the Genasense pump removed, received steroid and Abraxane infusions, met with my oncologist and program-supervisor nurse; in short, spent most of a day in the City at the place I’ve come to know as home-away-from-home.

Things are different. A heavy weight has been removed since my last PET scan. The threat of imminent danger is gone. I no longer wake with my heart pounding in fear of what the day will bring. On the other hand, there is still a sense of having to complete a long and rigorous journey.

This is a very different and much preferable trip. Difficult, yes, but it’s not like, for example, being trapped in a collapsed mine or on an icy mountain, hoping every minute that rescuers will arrive, but knowing there’s a chance time will run out before they break through. Or the panic that airline passengers felt moments before they slammed into the World Trade Center, knowing their lives were about to come to a violent end.

I’m not trying to minimize the horror of those other situations, but terror is terror. I experienced many moments of panic this summer knowing that no matter how valiant my fight, circumstances could drop from the sky and blow me away once again.

I may be out of imminent danger, but the struggle goes on.

Good read #1

A friend recommended a book that addresses problems with health care insurers, the obstacles they throw down in our way to keep from paying what it costs to keep us alive. The author is a cancer survivor who lived through a grueling ordeal with a rare cancer, and at the same time, fought her insurer to get her treatment paid for. Not only that, but faced with misdiagnoses and dismissive treatment on the part of her HMO, Laurie Todd researched and found the best treatment for her form of cancer, sought out the premier expert on that treatment, and secured approval to fly across the country to obtain that out-of-network treatment for herself… on her HMO’s dime. She realized early on that she was at least as likely to die from neglect by her insurer as from any cancer in her body… and she’d have none of it!

Laurie’s book is a gem, full of wisdom and attitude. Fight Your Health Insurer and Win: Secrets of the Insurance Warrior is her firsthand account of what she did and said to get her treatment approved and paid for in the face of the insurer’s claims that it was “experimental” and therefore, not covered. It’s also a very moving portrayal of her experience with a living nightmare, pseudomyxoma peritonei – appendix cancer. From her account, the more familiar forms of cancer are downright well behaved compared to this one.

Appendix cancer has a tendency to entangle all the abdominal organs with tumor and scar tissue. The lengthy procedure she ultimately underwent cut out parts of, and re-sectioned, many of her abdominal organs, and then, during the course of the surgery, applied heated chemotherapy agents directly onto those organs and throughout the abdominal cavity. It left her in the hospital for forty days afterward, and too weak to care for herself even then.

Since there was no-one in her HMO qualified to perform or recommend such a procedure, she had to become her own advocate. In so doing, the feisty Laurie Todd “turned [a prognosis of] ‘two good years’ into an 80% chance of twenty good years. It was a huge, terrifying, potentially fatal war that I had to fight. The best that I could do was put my head down, embrace the battle, and forge ahead.”

And ultimately, it was a task she found extremely empowering.

Much of Laurie’s book reads with the authority backed by a legal degree. She is not a lawyer, but her presentation is very professional and persuasive. She is acutely aware of the inherent conflict of interest built into the health care reimbursement system. Insurers hire doctors to provide care, but give them a mandate to hold down costs. In other words, the doctors’ professional oath dictates they provide lifesaving care, but in order to keep their jobs or their contracts, they are bound to their employer’s orders to keep within budget. Laurie sums it up this way: “If cost containment was the imperative, their primary goal was then to get me and my expensive and difficult cancer to just go away. Have no treatment, have locally available treatment, have only palliative treatment. And die – the sooner; the better.”

But she’s also smart enough to know that the insurance machine is supposed to pay for treatment. She knew from the outset that she had a good shot at getting them to do the right thing: “The folks at the insurance company are bureaucrats; they always use the same tactics in the same order every time. You are smarter than they are; it is a battle of wits with an unarmed opponent!”

Laurie’s book, available on her website, is a must read, even if you don’t have cancer. As she points out: “Nobody has a magic charm to protect them from Bad Medical Trouble.” It can happen anytime, and this book can pre-arm you with information to get you through some of the roadblocks.

Since her ordeal, Laurie has made it her mission to help others in the same situation. Based on her own experience, she has helped many other patients prepare successful insurance appeals. She speaks on the subject and conducts book signings.

In my case, I’m actually taking experimental drugs, so it’s no surprise insurance won’t pay for those. But the drug companies have a vested interest in seeing that the drugs get consumed, tested, and ultimately approved, so they donate them to the researchers. This is fortunate for me, as one dose of Abraxane alone costs $10,000, and the protocol calls for two doses per cycle. In addition, my oncologist's office administrator has done a phenomenal job of holding their feet to the fire for the myriad ongoing tests I’m subjected to.

So, thus far I haven't needed to personally take on my insurance carrier, but it’s comforting to know Laurie is only an email away.