Tracie Fights Back

Outside of oncology, I’ve had a mixed bag of experiences at Stanford, which in my mind I’ve considered gold standard of care in California.

First another recent good experience: My meeting with Dr. Gordon Lee, the plastic surgeon who will make me whole again at the end of all of this.

Perhaps that’s why I liked my meeting with him so much on Tuesday. After all of the poisoning, all of the talks of removal of body parts, here was a surgeon whose job is to build me back the way I was – and possibly better.

Because I’m having radiation after my mastectomy, I’m not a candidate for breast implants. Those spacers have to be installed at the time of the surgery, then pumped up slowly over time to stretch the skin back out. But my skin will be burned, and there’s a chance the spacers can interfere with the radiation, or, worse, deteriorate from it.

So my best reconstruction option is a Flap surgery, and I’m told Dr. Lee is the best and performs the most. The lengthy procedure will take skin, fat and veins from my belly and create new breasts from my own tissue.

The result will be breasts that look and feel real, albeit bisected by Frankenstein-like scars. The other down side is a six-week recovery period; but the bonus is a tummy tuck. Dr. Lee will take all of my fat, even if it’s more than what is needed for the smaller-size breasts I’ve requested (I’ve always hated wearing a bra!). I even heard the phrase “six-pack abs” during one of the discussions!

This whole plastic surgery idea is a mind-boggling foreign concept. I’ve been upset when loved ones got breast implants, angry that they were somehow made to feel badly about their body image. Same with botox and face lifts.

And yet, after months of talks with doctors about deadly cancer, potential long-term heart damage and disfigurement, along comes a doctor excited about putting me back together this spring. It was the first conversation about something that was going to happen to me that actually made me smile.

I couldn’t help but feel a little better about my future.

AND NOW THE BAD:

As regular readers of this blog know, I have always had problems with the power port installed under my chest skin. It’s the device nurses stick with a needle to deliver my chemo, which is too strong a substance to pass through an arm vein. The port has a tube that goes to my jugular vein and is “supposed” to lead to a vein into my heart. It’s temperamental and never, ever works as it’s supposed to. Blood draws are an exercise in tedium. It once took four hours and many vials of clot-busting blood thinners for it to give up blood for testing. Infusion nurses hate to see me coming. The draw has to work before it’s safe to start the infusion. The schedule falls way behind when I’m there.

Yes, I said it’s “supposed” to lead to a vein into my heart. But I’ll get to that in a minute because I’ve been angry about how the operation went down and have yet to write about it.

Two weeks after my diagnosis and a week before chemo was set to begin, I was still in shock. I spent two days at Stanford for baseline tests, then was scheduled for minor surgery to have the port installed in radiology.

As I lay on a gurney a very nice female doctor (an actual doctor, not a student intern), explained the procedure. I asked her if she would perform it and she agreed.

However, that is NOT what happened. I was wheeled to surgery by a couple of men in blue scrubs. In the operating room were about four other people, all men. I didn’t see the female doctor who had talked to me anywhere. They quickly hooked me to anesthesia (the Michael Jackson death drug propophil, I think). As I began to feel loopy a young man with a red beard sat in front of me, held my hand and said he would be performing the surgery.

“How many of these have you done?” I had the presence of mind to ask.

“None. But I stayed in a Holiday Inn Express last night,” he said.

I have to concede that that was funny, a takeoff on a commercial inferring intelligent decision-making. But it wasn’t to me at that moment in time, and before I could protest, they turned up the anesthesia and I was out. For a while.

I awakened during the procedure as they were wrenching the tube out an incision in my neck, negotiating a curve into the jugular.

“Hey, am I supposed to be awake?” I shouted.

A commotion ensured and I was out again.

I didn’t awaken again until recovery, when a nurse had to break this news:

“The doctor’s glove broke during surgery and you have to take antibiotics.”

Great, I thought. An infection heading into chemo, which I already knew would compromise my immune system by destroying my while blood cells.

I was pissed, but there was no one for me to tell what all had gone wrong.

It was a good two months before the pain subsided, and, as I’ve said ,it never worked right. Now we know why.

As the infusion nurses struggled with my port on Tuesday trying to draw blood, my oncologist Dr. Mollick came in for the second time, this time not offering a ride on the Segway. A routine X-ray revealed the problem: the tube that is supposed to lead to the heart vein stops short. Instead it stops in front of a secondary, feeder vein. He said that it is very likely that the flow of blood from that vein could catch the chemo and carry it to the vein where it is supposed to go, but he wasn’t sure. He needed radiology to read it, and he wants them to look on previous images to see if the port tube has shifted – or I if it always has stopped short.

It could explain why my heart always hurts when I get fluids and chemo. The drip has to be set on “slow” to avoid the tightness it causes in my chest.

What it meant for Tuesday was that my blood draws and chemo had to go through a vein in my arm – the very painful procedure that the damned painful operation for the port was supposed to avoid.

My options now are another port surgery – either to replace it or to replace the tube. Though I have only one more round of chemo, I have an entire year of the infused drug Herceptin, which is supposed to stop my kind of cancer from returning.

The port was supposed to be a friend to make my life a little easier. I’ve always had a sinking feeling that an intern seeking to gain experience at my expense ruined that for me.

I know it’s a teaching hospital, but I thought my request, made at the scariest time of my life, would be honored.

Despite my complaints, I’ve never been told why one person promised to perform my surgery but someone else did it. And I don’t think that’s fair, and it’s certainly not what I expected from Stanford.

3 Responses to “Good Stanford; Bad Stanford”