The worst day yet

I’ve heard that chemo side effects are cumulative, so maybe today was just an increment of what I’ve felt in weeks past. I spent most of it in bed, sleeping. When awake, I was listless and crampy and vaguely nauseous. The upset stomach made me wish I was still sleeping!

All told, things haven’t been too bad, but I hope there aren't too many more days like today.

Food

Anyone who knows me knows that I love good food.

I used to be a pretty good cook, but it was always driven by what I wanted to eat. I enjoyed getting creative, mixing and matching tastes in my head before translating them to actual dishes. These days, I prefer to have others do the cooking, but I still love sitting down to a good meal.

Yesterday I had my Abraxane infusion, and for the next few days I can expect some of the most intense side effects of the entire cycle. The cruelest of all is that it robs my sense of taste! It starts with a metallic taste in my mouth, and by tomorrow, most food won’t have more flavor than paper. At the same time, it brings intense and sudden hunger pangs that leave me weak if I ignore them.

I stopped for a slice of pizza on the way home from work and remembered what I was in for. I’d been craving the pizza, but when it got to my mouth, all I could taste was salt. I couldn't finish it.

I’m looking forward to Saturday, when my taste buds resume their normally exalted function. For sure, you’ll find me in the pizza parlor, savoring the slice I missed out on tonight!

A wonderful gift

So many friends and relatives have been really super in their efforts to reach out and offer help. I haven’t mentioned it here because everyone’s desire and ability to help is different. It’s a very personal thing. And it can become awkward on either side of the transaction. I for one find “help” very difficult to talk about.

I related a story to a friend recently:

I was about six years old and the family was seated at the dinner table. My younger sister walked in, proudly showing off a bunch of grapes that a neighbor had given her. There was a lot of competitiveness between my sister and me, and I was brash enough then to figure if she deserved grapes, then I deserved some too. I rose from my seat.

“Where are you going?” my father bellowed.

“To get some grapes,” I walked into the trap innocently.

“Sit down! We don’t ask for things.” my father reprimanded.

Not long after that, I had a dream. My sister and I were playing with a friend. My mother called the other two into the kitchen and offered them popcorn balls. They weren’t shy about showing off their haul when they came back to me. I was annoyed when I stomped into the kitchen and asked, “Where’s mine?”

“You didn’t make your bed this morning, so I can’t give you any,” my mother rationalized. “Your father works hard to earn those popcorn balls,” she added, reinforcing the notion that I had to work hard for whatever I got and I sure didn’t deserve handouts.

The lessons were ingrained early. And to this day, I struggle with issues of self-worth and deservedness.

I’ve mentioned before in this account that I’m way outside my comfort zone in lots of ways this summer. One of those ways is how people have generously offered time and things to ease my suffering and help me get back on track. My initial reaction, at least internally, is always: “But I don’t deserve it.” And sometimes the offers, combined with limited energy, have made me cranky and guilty.

On the other hand, my friends have done some incredible things.

My relationship with my sister, for example, has finally grown close and loving and accepting, after years of being dominated by competitiveness and caution.

Others who I’ve lost touch with over the years have returned to extend emotional and financial support, most notably my father’s sister, a dear aunt who was always supportive while I was growing up.

One friend championed my cause and raised funds for me from other friends, knowing I couldn’t dream of asking for money for myself!

Some have offered social opportunities. Others have helped me make decisions about organizing my accounts and affairs and business dealings. Another has agreed to take over writing my magazine column until I feel up to taking it back.

And the other day, I got a wonderful gift from my friends in the computer community I frequent. After my most recent scan, I spoke with my doctor about my schedule, and got clearance to attend a conference in October that some of my friends are running. They were so happy to hear from me when I called to register. They hadn’t known how to broach the subject, but had decided that if I was able to attend the conference, they would pick up my fees.

So many friends…. So many things to be grateful for….

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.

Chemotherapy, round two

The infusion nurse looked uncomfortable as she prepared to insert a needle into my mediport yesterday. It’s a different motion than slipping a needle into a vein to draw blood or start an IV line. She grabs it kind-of like a knife handle, and jabs firmly through the skin and all the way through the rubber cover of the mediport.

“It’s okay,” I assure her, “it doesn’t really hurt.”

But in spite of training, and years of practice, it doesn’t feel natural to stab someone in the chest that way, and they cringe a little every time they do it.

It doesn’t really hurt, but it does take its toll. It leaves me feeling deeply sad. I’m once again hooked up to my portable IV, back to carrying around a weeklong supply of Genasense. I’m back on chemo.

Don’t get me wrong, I’m extremely grateful that the treatment is working in my favor and I can look forward to a time when I’ll have hair and no cancer. But the process is very unsettling, disturbing, intrusive. It represents a profound loss of innocence. I’m reminded again and again that there are things I’ll never be able to take for granted again.

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.

I wish I had the nerve...

One of my favorite features in New York Magazine is a two-page spread called The Look Book, in which columnist Amy Larocca interviews someone on the street with notable style. The text is minimal; Q&A mostly about how the person describes their own look and where they got the clothes they’re wearing. When you rotate the magazine 90-degrees, it appears as kind of a sidebar to a large picture that takes up most of the two pages.

The current issue features a young woman with alopecia named Sam Rudolph. Alopecia is a condition that causes hair loss, and she has been bald since the age of seven. If you follow the link above, you can see her picture. She’s wearing huge sunglasses, nothing at all on her head, and she's lovely. The article ends with a fantastic quote:

Q: "How do you feel about being bald now?"

A: "Obviously, good enough to look like this. My mother always said my life would be easier if I just wore a wig, but I don’t want to hide who I am. Being bald is a big part of my life, and if I cover it up, it starts to feel like everything is fake."

This all has so much relevance to me now. I don't have the flair or the youth to pull it off, but I'd love to walk through the streets naked-headed! My wig is very natural looking and most people don't even know I'm wearing one. But it gets uncomfortable, particularly on hot days.

If I only had the nerve....