Sunday, September 26, 2010

Who We Are

Receive news of cancer, and it immediately becomes all consuming. But at some point, day-to-day life returns, although slightly askew. Now that we’re face-to-face with the gravity of our circumstance, it has become Life, With Cancer. But as my close friend Jerry Reeves, a pediatric oncologist in his first career, observed, “You don’t stop being who you are, just because you have cancer.”

Elaine has been as positive and uncomplaining as is possible to be. We’re simply working our way through it. But we try to not become morbid either. Playing the cancer card is a way to poke fun at how crazy our situation is, and to remind each other that life goes on.

So, in the snappy repartee that dominates a fair portion of our dialogue at home, the tumor humor plays out something like the following:

Early Morning. I’m up and am doing emails in the living room. Elaine calls out from the bedroom.

“Where’s my coffee! I have cancer, you know. I can’t be getting up to make my own coffee!”

There are variations on this theme.

Her: Boy, I could really go for a hamburger with fries and a shake.

Me: You’re shameless. Don’t you have any standards?

Her: No. I have cancer.

I should mention that most people who know us get that this isn’t real. People have been unfailingly kind and attentive, always asking after Elaine. And they nod knowingly when I mention her prima donna mode, because the joke is that she doesn’t have one.

We see this in all kinds of ways, but I’ve particularly liked our friends’ responses to Elaine’s baldness. Sometimes, when there’s a real occasion - a funeral we attended last week or maybe a fancy night out - she’ll wear one of her wigs, which are, no question, strikingly great, and amazingly like the Elaine I’ve loved for more than a couple decades now. But more often than not, if we’re out running around, or out to a movie and dinner, as we were a couple evenings ago with our pals Paulette and Tom, she goes with her usual baseball cap. And everyone’s always better than fine with that. We’re all relaxed. It simply is what is.

Next Wednesday will be the 7th of 8 chemo infusions. We’re past the dread and, with the light at the end of the tunnel, fortified against what’s left of this process. That said, we’re both acutely aware that, while we’re glad to be done with this part, the problem and all that comes with it remains. 

Dr. Buckley took Elaine off Avastin after her intestinal blockage episode in early August, and the infusions’ follow-on symptoms were significantly diminished in the subsequent two cycles. That has helped immensely.

At least superficially, it appears that Elaine has responded very well to the treatment so far. Her CA-125 score, an (imperfect) measure of the activity of the ovarian tumors, is very low (meaning good), varying between 3 and 5. There are women with CA-125 values in the thousands.

All this is speculative, of course. The best assessment of Elaine’s status will be available after a PET scan after her last infusion, around the middle to end of November.

But the truth is that, while the “gold standard” first line chemo-therapies for ovarian cancer succeed in driving most patients’ tumors into remission, the cancer typically recurs within about 12-36 months. At that point, the challenges are higher and the options fewer.

So our focus now is on learning much more about genomics and personalized therapies. This is using the person’s own DNA to more accurately associate cancer cell structure/type with available treatments, and also using the DNA to build preparations that are optimized to the patient’s own biology. In early October, I’ll attend an oncology conference in San Francisco, where several speakers will present on the current status of these research efforts, and I hope to connect with a few to determine whether Elaine is an appropriate candidate for the clinical trials using these approaches.

We’ve continued to be impressed with the care Elaine has received from Dr. Buckley and his associates, Drs. Robertson and Nowicki. It is worth noting that Gynecologic Oncologists’ training requires certification in both Internal Medicine and Surgery. Unlike the rank and file of medical oncologists, whose practice patterns can be highly variable, my understanding is that nearly all Gyn Oncs consistently adhere to strict data driven protocols established within the profession. Most belong to an international professional association, the
Gynecologic Oncology Group, that actively promotes professional information exchange and standards development. The result is that women with a particular condition in virtually any developed nation are likely to receive the same treatment, monitored and adjusted by the physician’s judgment. Few medical disciplines have this degree of rigor, but it is clearly the path to better treatment for all patients.

Dr. Buckley also has been fastidious about reporting results back to Elaine’s primary care physician, Dr. Glock, and soliciting his input on next steps. We are very fortunate to have been guided to physicians who practice so collaboratively and in such a sensible, advanced manner.

On their great health care blog,
The Doctor Weighs In, Pat Salber and Dov Michaeli have been running my posts about Elaine. Pat and Dov, who are longtime friends and know us well, titled my last one “Hitting Bottom,” an allusion to its gloomier-than-normal tone. She was right. But while we’re likely to be in that frame of mind again and again, intermittently, we haven’t been there much.

Most of the time, we do our best to remember, as Jerry reminded us, that cancer has not changed who we are.

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