Saturday, July 24, 2010

The Way It Is

On Thursday Elaine went in for her 4th of 8 every-three-week chemical infusions, a 4-hour exercise involving three very powerful drugs, followed by another 24 hours later. It is a communal event. A group of women sit together, each receiving a specific mixture. Some have been fighting cancer for 10 years or more. It goes into remission, then recurs. The doctors dig deeper and deeper into a limited arsenal to find something the cells will respond to. It is not a pleasant prospect.

A couple months ago I visited close friends, both oncologists, who now live in Truckee, CA, just outside Tahoe. Elaine was just beginning the chemo treatments. Larry told me, “The first round is the worst, because its unknown. After that, people say, “Well, it wasn’t pleasant, but I can get through this. Then around the 5th cycle, they’re literally sick to death of it and thinking, “Oh, just go ahead and shoot me!” Elaine’s not there, though.

So far, the process has gone like this. For three days surrounding her infusion, she takes a steroid, which gives her a high that lasts until sometime around Sunday noon. Then she crashes, with weakness and flu-like symptoms that send her to bed intermittently for 3-4 days. In a sense, it hasn’t been as bad as many people imagine. Most of the time, Elaine feels good, although there is a constant physical and mental cloud hanging over us. She is strong and in high spirits, her wise-acre humor shining through. The effects of the drugs are potent, cumulative and always there, and in the afternoons she’ll flag, as though she has just finished a marathon. “I think I need to lie down for a little while,” she’ll say, and she’ll sleep for two and a half hours. We try to keep in mind that what she’s dealing with are the impacts of the best solutions currently available, rather than the problem. The science moves slowly, but it does progress. In general, the mortality rates for different kinds of cancer are still nearly what they always have been, but the survival times have been lengthening. A great deal of work now is being focused on using the patient’s own DNA to tailor the drugs in a way that can be optimized by that person’s metabolism. In this environment, with so much effort directed to the mechanisms involved, we can’t help but hope that a breakthrough is within reach. Elaine’s done a great job of learning to indulge herself in the things she enjoys. She is reading constantly again, something she hasn’t had the time to do in years. She has always been a wonderful cook, but now she has the time to dive into that. Yesterday, after a trip to the farmers’ market, I was treated to a fresh blueberry cobbler. A week from now, we’ll head down to our haunt in the Keys, where she’ll paint and we’ll enjoy the scenery. She’s threatening to start playing piano again, although the tips of her fingers have become a little numb from the drugs, and maybe even re-take up bridge. At one time, she was a very competitive bridge player.

Of course the loveliest part of the experience has been the ongoing attention. A couple weeks ago, most of Elaine’s large and rambunctious family converged here for a weekend that was filled with the beach and good food and snappy repartee. (Delivering a hello kiss, her brother said, “How ya doin’, Baldy.”Winking Every day, there are calls, emails and letters from friends nearby and far away, with unending offers to come stay, do small errands, or simply spend time together. A couple times a week, she has lunch with friends, which keeps her in touch and happy. In some ways, she’s never been in such demand. When she goes out, she’ll sometimes wear a head dress - our friends Judy and Lynn send her an unbelievably wonderful assortment of beautiful head scarves and hats - or even, when the occasion calls for it, one of the cool, AMAZINGLY great looking wigs she’s acquired. But most often, in the house or around the neighborhood, she’ll go natural or with just a baseball cap. Everyone’s gotten comfortable with Elaine’s new look, but the deeper point is that Elaine is very comfortable with herself. This week brought some particularly good news. Elaine had a test for genetic mutations (BRCA1 and BRCA2), which, when positive, signals a higher propensity for breast and ovarian cancers. The test came back negative, which means that her family members can breathe a big sigh of relief. In an odd way, we have settled in for the long haul. The tone and pace of our lives have changed subtly but palpably. There is a great deal to learn and to process. But like others in this situation, we’re learning to genuinely take it as it comes.

For those poor souls who are late to the party or who want to know about how all this unfolded, our previous letters are here.

You can contact Elaine directly at 904-993-8185 or

Thanks for your continued friendship and love.

(Elaine and) Brian

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