Tuesday, December 15, 2009

Considering a chemotherapy port?

As my chemotherapy winds down -- woohoo! -- the verdict is in on my port: I'm glad I got it.

I had to decide at the start whether I wanted my 2-3 hour infusions to be by an IV in the hand/wrist region, or whether to get a "port-catheter" surgically implanted in my chest.

The advatage of a conventional IV was the avoidance of surgery. The downside was that the drugs are so toxic they could destroy some of the little veins -- permanently. The removal, during surgery of the lymph nodes in one armpit meant I wasn't ever supposed to have an IV in that arm. So the other arm would have to endure all six chemo infusions.

By the end, the nurses might really be struggling to find a good vein. And that would mean some discomfort.

Installing a port -- a little doohickey under the skin of the chest -- would avoid all that.

Yet here's the thing: The mere mention of the word catheter dug up such a painful memory of my father that I got instanteously teary. And that clouded my decision-making for about a week.

Long story short: My dad had leukemia. He endured two months of chemo so harsh he was required to stay in the hospital the whole time. Shortly before his expected release, they proposed installing something called a Hickman catheter because his veins were truly trashed.

It was a brand new device to be installed in his chest, with little tubes coming out. It had to remain sterile, because any infection would go straight to the heart. And here's the kicker: They said he could care for it himself at home! My sisters and I balked: How would a notoriously unmechanical 76-year-old man who wore old-fashioned bifocals do this on his own?

To make matters worse, the device was so new that no nursing or rehab center in town would accept him; their staffs simply weren't trained to care for the damn thing. (None of us daughters lived nearby.) Our only choice was to have him move out-of-state, away from all his friends and familiar surroundings, to a nursing home close to my sister.

As we wrestled with this, I ended up talking with the hospital social worker. And I posed a logical question: Might he be better off without the damn catheter? And get this: The social worker actually told me she thought it would be "cruel" to deny him the catheter and subject him to more IVs.

No, lady. You were wrong then and you remain forever wrong. (And wow, I hope you went into real estate or something besides social work!) What ended up being cruel was uprooting my father in the sunset of his life -- the whole decision driven by a medical device so new nobody knew what to do with it.

OK, so that wasn't such a short story. Sorry.

Those memories had to wash over me and recede before I was able to make a rational decision about my own chemotherapy.

At first I thought I'd try the veins, and if that didn't work, get the port installed. The oncology nurse shook her head. What happens, she said, is that people get through three treatments before things become painful and troublesome, but by that time, they say, "Well, I already made it through three, I'll keep going." And then the final treatments get kind of ugly.

So I flipped that logic on its head: I decided I'd get the port, and if I didn't like it, I'd give myself permission to have it removed.

It was an....interesting surgery. It takes place without general anesthesia, and right under your nose. I felt there should be organ music playing while my surgeon maniacally laughed. There were wires involved, and pliers, and at one point some cauterizing that caused smoke to rise from my chest. Yikes! (If you're squeamish, ask for blindfolds, or maybe one of those curtain they use to block the view.)

I ended up with a little bulge under the skin -- about the size of a nickel -- roughly where I'd place my hand when saying the Pledge of Allegiance.

Since then, it has given me not a moment's worry. It doesn't hurt, and it has made my chemo sessions truly painless. I feel somewhat Borg-like when they plug in my tube, but then I'm able to put it out of my mind. It also has the benefit of being a bit less icky for my visitors. (I've used my sessions to catch up with old friends, kind of like a ladies' lunch minus the lunch.) It was a rocky road to make that decision, but I've been pleased with my choice.

Now that I've had my last session though, I'm anxious to have it removed. I want my body back.

By Kathleen O'Brien/The Star-Ledger
December 14, 2009, 7:18PM

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