Lymph surgery and aftermath

I heard the woman's voice as if from a great distance. "Carolyn, your surgery is over and it went very well. I'm Mary, one of the nurses. Can you wake up for me?"

I couldn't remember how to open my eyelids, but I knew there was something important I needed to ask right away. "So my lymph nodes were clear?"

"Yes, everything was fine."

What a relief. I started to notice that the whole upper right side of my torso was throbbing. Whew, if it hurts this much from just the smaller sentinel node surgery, it's a good thing I didn't have to experience the pain from the full axillary surgery.

Another nurse materialized and I told her about the pain. She plunged a hypodermic into my IV; I could feel the dark cloud of clenched misery drift away as it took effect.

I wanted to double-check with her. "My lymph nodes were clear, right?"

"That's right," she said.

"Can my husband come in?"

"You're not quite ready but we'll get him soon."

A little later, she elevated the top part of my gurney so I could sit up, and Mark appeared.

I focused on his beautiful blue eyes as he sat down and asked how I felt.

"It was hurting a lot but they gave me something." I figured I'd triple-check. "So my lymph nodes were clear?"

His eyes got brighter. "They found cancer in the first node they looked at, honey."

"What! But the nurses said everything was fine." I could hear my voice rising higher and higher and my breath starting to come out in gasps. "You mean they went in and did the bigger surgery and took out a whole lot of the nodes?"

He nodded. By now I was sobbing. "That means it's metastasized."

His eyes were wet. "That's right, honey."

"I'll have to have chemotherapy."

"That's right, honey."

"Wait, are you sure? Did Dr. C say that? Did she tell you I have to have chemo?"

"Yes, she said there wasn't any choice now; you definitely will need chemo."

I couldn't believe this. Dr. C had been certain we wouldn't find anything in the lymph nodes and I was sure she was right. I'd even wondered if I should ask about skipping the surgery.

"Fuck," I choked out between sobs as Mark held my hand. "Fuck. Fuck. This isn't fair."

* * *

Earlier this hospital adventure had gone better than our previous outing (when the surgery got delayed for several hours).

In the nuclear medicine department, I was escorted to lie down on a narrow steel table; my 128-pound frame barely fit. "What if you have to get a 300-pound person on here?" I asked.

Eric, the friendly technician, used the kind of medical jargon I could understand. "Oh, the important parts fit on the table and the rest just kind of splooshes over the sides."

The scruffy but cute young nuclear med doctor warned me: "I have to tell you, a lot of patients find this procedure very uncomfortable. I'm going to inject the radioactive isotype in four places on your breast, at 12 o'clock, 3, 6 and 9. It's an acidic substance and many people feel a strong burning sensation. I get a lot of nasty letters afterwards saying 'You really hurt me.' Just tell me if it hurts and I can try to go more quickly or more slowly; whatever you need."

But actually it wasn't that bad. I did feel briefly as if I were being poked with hot needles, but it was over quickly.

Eric told me to spend 10 minutes gentling massaging my breast to spread the isotype. Too bad Mark was planted outside in the hallway; this would have been a perfect medical job for him to tackle.

Lying under a giant Geiger counter/camera, I watched a black-screened monitor slowly light up with the image of the nuclear substance, like seeing a Polaroid photo develop. There was a bright cluster of four dots where the doctor had injected the isotype, then two smaller concentrations that were my sentinel lymph nodes. There were smaller shimmering dots all over the breast. Eric gave me a lead shield to hold over the injection site so its brightness wouldn't overshadow the other areas; it was the size and shape of a CD, but weighed a couple of pounds.

Back in a curtained space in the pre-op area, me in a hospital gown on a gurney, Mark in an uncomfortable plastic chair, we settled in with our books and made bets on what time surgery would actually happen. Amazingly, the anesthesiologist showed up at 2:30, the scheduled time. This time I was awake as I was wheeled to the OR and for about half an hour in there while three nurses prepped the room and paged my surgeon. "You won't remember any of this," one of them told me -- but ha! proved her wrong.

When Dr. C arrived, I asked her about the Oncotype DX test. The night before, she'd told me that my score was 26 -- the high range of a grey area where it was uncertain whether chemotherapy would be beneficial or not. (Below 17 generally you don't need chemo; 18-30 is midrange, and above 31 you must have chemo.) She suggested coming to her office on Tuesday to discuss it in more detail.

That was all I remembered until waking up in the recovery room.

* * *

"Dr. C said you can stay here tonight or you can go home, whichever you want," Mark said. "I told her you'd probably want to go home."

"Oh yes, get me out of here, honey."

But I was so devastated by the news and so ensconced on my gurney and so groggy and intermittently being slammed by pain that I wasn't sure if I could get up. I fantasized that Mark could just wheel my gurney under the night skies to our house, as if I were royalty being carried in a sedan chair in a stately procession.

We could hear other patients waking up in the curtained areas all around us in the recovery room. The nurses were offering graham crackers and juice, which made me feel like we were preschoolers just rousing from naptime. One man, who must have been in his 60s, said querulously: "Don't you have any milk? I like milk with my cookies."

A nurse named Frank arrived to show us how to care for the drainage tube that ran from my underarm to a small plastic bulb. It would stay in place for 10 days, he said, and we'd need to empty and measure the accumulated fluid (mainly blood) several times a day. Mark, who hates blood, gamely did what needed to be done, and said he'd be able to manage it when we got home; I was still too groggy to grasp what was going on.

"Do you want to get dressed?" the nurse asked. I just couldn't fathom how I could lift my arms, let alone navigate all the complex tubing coming out of me.

"Can I just wear the hospital gown home?" I asked. He agreed -- score! It was the usual fetching, open-in-the-back number but I tried not to flash anyone as I navigated from the wheelchair to the car and from the car to our house.

At home, my pee came out bright blue, thanks to the blue dye they'd injected to help locate the sentinel nodes. I felt like a little kid who'd just learned to go potty for the first time. "Mark, come see! I have pretty pee!"

Preview of Thursday's surgery: Lymph node biopsy

Cancer is all about chaos, as cells run amok, split up and skedaddle in all directions, like ants boiling out of a nest that’s been poked with a stick.

But sentinel lymph node surgery is predicated on the idea that breast cancer spreads (or metastasizes) in an orderly way, more like a line of ants on a mission to infiltrate an open peanut butter jar. Its first stop en route to other body parts is likely to be the lymph nodes, clusters of bean-shaped thingies (not the actual medical term) that filter lymph and other fluids. Their nearest location to the breast is under the adjacent arm.

One medical term I’ve now mastered is “axillary,” the fancy-pants word for armpit.

Just a few years ago, invasive breast cancer like mine was treated with an axillary node dissection – removing most or all of the dozen-plus lymph nodes in the armpit to see if the cancer had spread there.

But doctors figured out that cancer always made an initial pit stop in a few “sentinel nodes.” Nowadays, it’s possible to remove and biopsy just those sentinel nodes. If they’re cancer-free, then that should be true for the rest of the nodes. Taking out only one to five sentinel nodes reduces the pain and potential complications such as swelling, stiffness and, most ominously, lymphodema, associated with the full axillary lymph node dissection.

Here’s how it will work: When we get to the hospital on Thursday, we’ll report to the department of nuclear medicine –- marked by that black-and-yellow trefoil I remember well from elementary school drills where we hid under our desks and covered our heads with our arms to prepare in case the Soviets dropped the bomb on New York City.

The tumor site in my breast will be injected with a radioactive substance (I persist in calling it “uranium,” because that’s a familiar word to me but it’s actually technetium-99). After about two hours, the “uranium” should make its way to my sentinel lymph nodes. To make them even easier to find, a blue dye will also be injected.

In the operating room, Dr. C will use a Geiger counter (that is literally what it is, not just my attempt to substitute words from my limited store of scientific terms) to locate the sentinel nodes, which presumably will get it to beep up a storm, and will also be identifiable by their new, true-blue hue.

She’ll cut out those sentinel nodes and send them stat to an Alta Bates pathologist. He or she will check them on the spot for signs of malignancy while I’m still anesthetized.

Within 20 minutes, Dr. C will get a call telling her either that the sentinel nodes are cancer-free –- or that they’re not. If the former, we’ll be done for the day. If the latter, she’ll make a bigger incision and remove many more nodes, i.e., do an axillary node dissection.

Finding cancer in my lymph nodes would make this a whole new ball game. Instead of NotSoBigC, we’d be dealing with capital C, Big C.

Needless to say, I devoutly hope for the “all clear.”

* * *
Next post: A preview of the other part of Thursday’s surgery