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Needles or Port? A Cancer Patient Decides

The first question many cancer patients are asked at a doctor’s office or an infusion center is “Do you have a port?” I shake my head no, but add the words “not yet.” To port or not to port: That is the question facing me when I arrive on the hospital hall dedicated to clinical trials.

“They are tiny and rollers,” the nurse says as his fingertips trace the veins on my arms. My part in a trial has begun, but the only “good” vein in the crook of my left arm looks alarmingly bruised, as do both of my wrists. Since my diagnosis with ovarian cancer, many nurses have sorrowed over the fact that I am “a hard stick.”

Chemotherapy has made my small veins even more fragile and difficult to access, but for years I have resolutely refused a port: a catheter connected to a disk (about one inch in diameter), both of which are surgically implanted in the chest. Blood can easily be drawn or saline, antibiotics, chemicals, minerals and blood transfused through a port. Some women I know pledge allegiance to it as a sort of good-luck charm.

Why haven’t I saved myself from so many painful sticks? First, it worries me that an implantable “venous access system” is usually put into the jugular or subclavian vein. Surgery can go wrong, catheters can kink, disks can flip, and I fear an operation that might injure my heart. Second, I have heard of patients incurring infections or clots from a foreign object left inside the body, and I had discovered how debilitating infections can be when chemotherapy lowered my resistance. Third, a port requires upkeep since it has to be flushed every month and so means more trips to the hospital. Finally, I dread the mortification of being a cyborg: a creature part organic, part inorganic. Visible and palpable on the upper chest, the disk and catheter would lodge within me. Would they further corrode my sense of autonomy or further circumscribe my existence?

That said, my resistance is waning. Predictably, and despite scrupulous patience, the nurse proceeds to “blow” two veins, much to his dismay, before he asks another nurse to make a third attempt, which succeeds. All the subsequent blood draws can be made now through the attached IV. Even the magnesium that I apparently need can enter my body drop by drop through the IV. Yet this is a temporary device, I realize, which will be removed at 10:30 p.m., when I leave. Because of the strict regulations of the trial in which I am enrolled, I will have to be stuck every morning this week for blood tests to see if and how the experimental drug affects my body. Should I give in and get a port?

As is often the case, the decision is left entirely to me. One of the ironies cancer patients face is how often we are asked to participate in medical decision-making when we are least confident about doing so. Cancer has taught me that I little know myself: I had no discernible symptoms at the onset and recurrence of cancer, and none, for that matter, of the dangerously low levels of magnesium that came to light on the first day of the trial. Yet just when I fully realize how poor a judge I am of my own condition, agency is assigned to me: I am supposed to take responsibility for which protocols would be in my best interest.

Doctors and nurses may be constrained to recommend the implanting of a device that would make their jobs easier, but they do not hesitate to urge patients to undergo serious operations, to accept toxic infusions or to enroll in experimental studies. In the divide between medical authority and patient control, the port lands in the second category. Despite well-meaning talk about patient rights, making decisions — about all sorts of issues — can be troubling for those whose cancer has driven home their ignorance about themselves. I have no way of knowing if I will remain in the current trial, or for how long. Would the trial close because of too many bad side effects or, worse yet, deaths? Might I have to drop out because of dangerous blood counts or infections? A storm of unanswerable questions swirls about me.

As I have in the past, I turn to the members of my cancer support group. I e-mail a nurse in the group who has a port, asking if it can be used in hospice for painkillers when the time comes. She responds with assurances that all patients in hospice can be properly medicated, with or without a port. Though I have known her for only three months, she closes with “Thinking of you! Love, Mary.” The compassion of my support group and of hospice serves me as a port in the storm.

Given the incessant blood draws and recurrent CTs that are part of this clinical trial, I finally made my decision. Yesterday, the port was implanted in a relatively painless operation of less than an hour. Before leaving the hospital, I received a list of standard precautions, but there was one I had not anticipated: The nurses earnestly informed me that I cannot go skeet shooting!

Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.
Posted By By SUSAN GUBAR  At 9/24/2012 4:37:07 PM
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