Saturday, May 22, 2010

Saturday, 5/22

This week Elaine entered an important second stage in her cancer experience: the beginning of her chemotherapy. Monday night will mark one month since a tremendous abdominal surgery. By earlier this week, she was walking 3 miles each day on the beach, and Wednesday she did 4 miles. There is no way to describe her recovery except “spectacular.”

Last week she had a “port” installed in her chest, a wonderful advance in this type of circumstance, that allows clinicians to plug in medication lines or take blood without having to stick her. Positioning the port is a slightly involved outpatient procedure, overseen by an Interventional Radiologist.

Then Thursday of this week, she visited Dr. Buckley’s office for her first of 8 cycles of chemo, a cocktail of two drugs - Taxotere and Carboplatin – that have become a protocol for ovarian cancer. Then yesterday, she returned for an injection of Neulasta, which boosts white blood cells to fight off infection. The chemo devastates the body’s white blood cells, so bolstering them again immediately is critical. The next cycle of the cocktail will include Avastin, which inhibits the development of blood vessels that would feed the tumors.

I was hoping we might leapfrog this round of more conventional, one-size-fits-all therapy, so I reached out to identify the researchers spearheading the genomic (DNA sequencing) efforts that can be used to create personalized therapies. Alas, that work is underway in ovarian but still early, and the patients allowed into the clinical trials have already been through conventional treatments. So those approaches may be available, but down the pike. The upside is that, as more time passes, the knowledge base and practical applications in this area are rapidly expanding and becoming more robust.

It is clear that managing this situation – and particularly the drugs - is staggeringly expensive. For us, whose work over the last decades has been in health care, it has underscored the terrible plight of people who do not have access to the great coverage that we do, or who face personal financial ruin just trying to cope.

One of the most comforting and encouraging aspects of Elaine’s care has been the realization that her physician team generally, and her Gynecologic Oncologist specifically, are top-flight. Honestly, when I heard the diagnosis, my heart sank that we were in Jacksonville and not a major metropolitan and cancer center like NYC or Houston. But, as it turns out, the world of GYN ONCs is relative small and close-knit. Dr. Buckley is held in extremely high regard locally and is very involved in the international community and activities in his discipline. He’s also very knowledgeable, open to questions and suggestions, and gracious. Among the first things he did was give Elaine and me his email address. It would be difficult to hope for more than that.

Elaine has been her normal buoyant, matter-of-fact self through all this. We’ve read the materials and the literature, and we have no illusions about the difficulties that often accompany the condition and the treatments. But she’s as fit as she can be at this point, we’re careful in how we eat, and we’re trying to take one day at a time. We know that there are challenges ahead, but we’re trying to not let them catch us off guard.

At the same time, we’re moving ahead with projects here at home. Before all this began, we had begun a complete renovation of our kitchen. Last weekend the new cabinets went in, and this week we should get the new granite countertops, the sink, the water turned back on, the range and dishwasher reinstalled, and a new fridge. Several people have pointed out that the distraction has probably been a good thing. I’m trying to wrap my head around that perspective.

The outpouring of support has been overwhelming. Last night, Helen and Phil Sullivan – Helen’s one of my very favorite offshore sailing crew pals – dropped by to bring a huge cornucopia of frozen cancer-specific meals that she had prepared. Helen is a very accomplished and enthusiastic cook, had researched this in depth and marked each meal with labels that indicated its appropriateness for things like nausea, constipation, sore mouth, diarrhea or “taste alterations.” The sheer methodical effort and care that she put into this was breathtaking. It’s something we won’t ever forget.

Other people that we’ve only connected with every 6 months or so in the past, have called consistently, cheerfully. Elaine’s received lovely presents. Yesterday a beautiful robe appeared. There have been audiobook subscriptions, help when my schedule has conflicted with something Elaine needs to do, or MENSA puzzle books. (Elaine’s the fiercest word puzzle competitor I’ve ever known.) The list goes on and on of deeply thoughtful notes, phone calls and doo-dads. Every day we hear from many people: Elaine’s siblings, her close work colleagues and friends, and our broader community of friends around the country, all of whom have really become a lifeline for us as we work through this difficult circumstance. Everyone knows we don’t need anything, so the focus has been on delighting Elaine, which every effort has easily achieved. (I can promise you she’s an easy mark.)

Now that our kitchen is almost back together and the living room no longer looks like we set off a grenade there, she’ll undoubtedly start painting again and continue her walking. We’ve adjusted our schedules to accommodate a week of serious down time every three weeks for the next 6 months, and we’ve scheduled a couple trips to the Keys and other places where we can do not very much with friends or while looking out over the ocean.

There’s not much to do now but to hunker down and weather the storm, and I’m pretty sure we both know how to do that.

If you’d like to contact Elaine directly, she’s at 904.993.8185 or

Thanks again for your love and concern.

(Elaine and) Brian

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