Saturday, June 12, 2010

Learning To Live With It

Dear Friends and Family,

It has been a little more than 6 weeks since the surgery where Elaine’s doctors found her tumors, and about 10 weeks since she first presented complaining of symptoms. Her wounds have healed beautifully. She is strong and her spirits are high. Most important, we’re over the shock, and so we’ve settled into the stark truth that this is about how we can manage a very serious situation over a very long period of time.

The texture of our lives has changed. Of course there’s the feeling that we’re sitting under the Sword of Damocles. But suddenly Elaine doesn’t have a day that’s chock full from beginning to end, and sometimes I can see she’s a little at odds that she doesn’t have as much to do as she’s used to. She tires easily, and will take at least one and sometimes several naps every day. She lost a good deal of weight through the surgeries, and must consciously focus on regaining at least some of it. She has lots of minor pains and inconveniences associated with her condition, but those are gradually ameliorating.

Meanwhile, for the next few months, I’ve recalibrated my schedule so I can be here for the week after her chemo treatments. I can travel in the down times. I’ve further ramped up my daily walks, and this has helped me stay centered.

I believe Elaine’s solid good sense and upbeat attitude have saved the day here. Truthfully, I was knocked off balance, and I’ve just begun to regain my footing. Hopefully, we’ll both get better at this as time goes on.

Last Thursday Elaine had her second of eight rounds of chemotherapy, an intense 4 hour infusion of preparation drugs (steroids and anti-nausea), Taxotere, Carboplatin and Avastin. As I mentioned last time, this is followed up a day later with a shot of Neulasta, which bolsters her white blood cells in the bone marrow to fight infection. Two days later, she still feels OK, but her joints are sore and there’s a metallic taste in her mouth. We’re hoping that this will be the worst of it this time, but it’s doubtful.

Next Friday, she’ll have the stent removed that was implanted during her first surgery, on April 1st. This kept the ureter open and saved the kidney, and it came at the small price of endlessly nagging discomfort. Getting it out will be like coming out of the darkness into the light.

To some degree, it could be argued that Elaine has “breezed through” this siege of the last two and a half months. In addition to fabulous care, I keep returning to the terrific diet she maintains for us and her rigorous efforts to remain fit. Now, during the aftermath of the chemo treatments, she’s being especially careful. For lunch she had some of the cancer-friendly soup that our friend Helen prepared. Tonight, we’ll have pasta with mushrooms, dried tomatoes and asparagus, another recipe that’s aimed at being particularly nutritious during chemo. There’s a larger point here, though. EVERYTHING matters. Swept up into it as we have been, that fact is suddenly inescapable.

Elaine’s found herself in a store here at the beach that caters to women living with cancer. They have hats and clothes and other things that are right for women going through this. Elaine told me that her favorite was a breast cancer survivors’ t-shirt that said, “Yes, they’re fake! My real ones were killing me!” Gallows humor everywhere.

Sometimes it’s the seemingly small things that are most provocative. Two weeks ago, Elaine showed me that when she twirled her hair with her finger – an idle habit she’s had as long as I’ve known her - three or four strands would simply dislodge and pull out. By week’s end, it was clumps. So last Friday, her good friend and hair stylist Deb Tafflin cropped her hair close, about a half inch all the way around.

We both had been adamant that losing her hair is of no importance in the scheme of things. But old familiarities die hard. Seeing her pull bunches of hair away was unnerving, and I knew that, for her, it nailed down the reality of what we’re going through. We know it’s symbolic as much as anything, but it was still disturbing. Elaine maintained she looked like a hedgehog. Actually, I thought she looked great. However, she IS still shedding like a golden retriever.

We’re adjusting. She’s doing so well I want to shout. The attention of so many friends has been genuinely gratifying. We both know things could be a lot worse, and are for many people. We’re getting through this just fine, all things considered.

To write her directly, her email address is If you’re interested in how all this unfolded, the letters I wrote along the way are here.

It goes without saying how much we appreciate you hanging in there with us.

(Elaine and) Brian

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