Friday, May 10, 2013

Living with cancer - Good News Soup by Susan Gubar


People with incurable cancer do sometimes receive good news, as I have. Why is it harder for me to share good news than bad news? During treatment, good news produces elating highs, but also anxious lows.
When I entered a clinical trial for a new cancer drug, the consent form stated that the medication would not provide a cure and could kill me. The pills’ effects on my ovarian cancer were to be measured by the CA-125 blood test, in which numbers above 35 indicate disease growth.
I started the trial last August with a CA-125 over 100. As the number fell in the autumn to 38, in the winter to 9, and in the spring to 5, my morale rose – tempered by occasional dips and drops.
My family and friends are ecstatic. So is my oncologist, who wrote in an e-mail: “You do not even know how exciting it is to see the results of this new drug. I do a lot of clinical studies and I see so many negative results, some of which are fatal. We do all that work to get one rare patient who gets benefit … very rewarding to see it happening to my friend!”
The last two words of this message touched me to the quick. After four years, Dr. Matei had entered my heart and (apparently) I hers. A great joy to make a new friend at my age and in my situation, especially a friend so admired.

Yet I worry that I will fail her. A number that descended in the past nine months can ascend in the next nine months. (Overwhelming odds are it eventually will.) Might sharing good news jinx it — turn it, in the blink of an eye, into bad news?
I know from the nurse administrator of the trial that the experimental drug is not benefiting women with breast cancer. My good news makes me distressed about their bad news. Also, I had overheard conversations in the hospital waiting room about other ovarian cancer patients dropping out because of deleterious side effects, some of which I experience.
Weak from months of dosing, I cannot stand on my feet to cook for more than 10 minutes at a time. At the supermarket, I ogle ready-made meals. Changing the sheets on the bed requires time-outs. Filling the bird feeder, hauling it out, bringing it back in at night (so the squirrels can’t raid it) takes too much fortitude. Bones ache that I did not know I had. My hair has thinned so drastically that Joanne at the salon clipped it close to the scalp, all the while lambasting comb-overs.
Diminishing the cancer seems to involve depleting me. Still, I have kept my resolve steady by focusing on the satisfaction of contributing (if only in a minuscule way) to medical research. I had also kept myself on an even keel by hunkering down for the worst.
Now, with the best possible results, I am a neophyte who does not want to be an ingrate. My trepidation at the lowering cancer marker reminds me of the angst recounted by many patients at the end of a round of successful chemotherapy. The gift of time starts to feel like a present spoiled by uncertainty about the future. With cancer, you can’t win for losing.
Yet today I would rather be a cheerful Tigger than a gloomy Eeyore. So to buoy myself I decide to use the chicken stock defrosting in the fridge, its fat congealed on the top, to make matzo ball soup for my visiting daughter and son-in-law.
After I toss most of the fat, saving a tablespoon, I start whipping up the egg whites. But one of the rotary beaters of the electric mixer refuses to stay in its socket; it keeps falling out, no matter how I swivel it. I am here to testify that the gizmo works with only one beater. That, too, feels revitalizing, even though my low numbers and high spirits may have started to change on the day you read these words.
Tonight there will be homemade soup. Tomorrow I’ll put out the bird feeder and leave it out, despite the squirrels.
(By Susan Gubar for the New York Times - Living with Cancer)





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