Friday, September 3, 2010

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!"

9 comments:

  1. From Carolyn: I'm reposting a comment that dear friend and wonderful writer Sue Doro posted the other day, because it's such a gem that it deserves more reading!

    ==Caramel Corn and the Big C==

    When I was a child my mom would take me to the movies on Wednesday nights because it was “dish night” and she got a free dish or platter or gravy boat etc. I remember she ended up with a lot of gravy boats and we never used them! But anyway…I’m not writing about gravy or boats. I’m writing about the Big C.

    The first time I heard the word that starts with the Big C…I was 10 years old and it was at the caramel corn and popcorn store next to the neighborhood movie show we frequented. It was 1947 and the worst winter storm on record had finally let up enough in Milwaukee for sidewalks and streets to be cleared and for us to get out of the house and walk to the movies. They had popcorn for sale inside but the caramel corn store next door had a better tasting product for the same price (5 cents a bag).

    We stopped in to buy a bag and the nice guy that usually was there…wasn’t. In his place was his wife who told my mother that her husband had cancer and wouldn’t be working any longer. Those were the days when the Big C was REALLY the Big C and people all thought it was contagious or at least the thought of it would surely “give” it to you.

    My mother, being a person who believed in catching Cancer germs, evil eyes, ghosts, beings from another dimension…and any other scary creature her mind could conjure up…stopped going to the caramel corn store…so did a hell of a lot of other customers who weren’t even as “metaphysically inclined” as my mom…and eventually the store closed down.

    The reason I’m telling this old and sad and bedraggled tale is that the Big C still makes people freak out and back away and generally not respond to blogs, emails etc…unless they are really close to the person who is fighting it.

    When we asked Carolyn what she needed in the realm of support…she answered…just write on her blog….otherwise she feels like she’s writing and dropping the words into a dark hole…so this is my attempt to nudge and poke all of you who receive her blog and words of wonderment and haven’t yet responded….please…write something back…anything…a smiley face…anything!

    Thank you all you have responded so far…thank you thank you…I figure that we’ve come a long way…but like racism, sexism and other “ism’s” the Big C (ism) needs eradicating too.…we have a long way to travel on this learning road we’re all on! Let’s blog together! Let’s open a caramel corn store. I hear there’s a low carb version!

    Sue Doro

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  2. So glad your surgery is over…so sorry that the nurse gave wrong information…that’s horrible. It spins your brain around. And yet you sense of humor can’t be stopped. You are amazing. I don’t know what else to say!! Take care. Take care. Larry is writing to you too. See below!
    Love
    Sue

    Larry writes: Dearest Carolyn,
    So many of your amazing qualities show through in your writing even in such a difficult time. Your ability to be passionate, sensitive, analytical, informative and even funny all at the same time in the middle of this crisis is a perfect example of what makes you such an inspiring and impressive person that we love so much. How can you make us laugh reading a blog about breast surgery! In your own Carolyn way you not only communicate with us but you also take care of us in terms of responding to our deep concern about you and making us a part of this challenging journey. We are definitely fellow travelers with you and Mark at every moment of this process. We want you to feel our love as we feel yours coming through the words you write. Thanks for reaching out to us in this way. Envision us wrapping our arms around you and Mark in a big supportive loving deep hug that will not waiver in its concern but only grow in strength. Whatever the two of you need we are there for you always.
    love
    Larry

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  3. I remember being in the hospital under sedation and barely able to process what was going on around me, let alone what was happening to me. To this day, I would be incapable of describing the emotional events of that day clearly let alone so beautifully and with such humor, compassion and wisdom. I am so grateful to you for letting all of us who love you so much share in all of these moments in such personal detail. You have such a gift for simply conveying the complicated process of treating this terrible disease. Rather than feeling powerless to help or to understand, I feel like I am taking every step with you. Thank you, Big C, for being you. And keep writing!

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  4. For Carolyn…the Day After

    Carrying you in our hearts
    Is not hard
    Is not a heavy burden
    Is instead
    The reminder of a new day
    The rhythmic beat of joy
    The silliness of blue pee and
    The breaths of life going on
    And on…and on

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  5. Hey Carolyn Kiddo,
    So I thought of you all day yesterday. We now have a shared anniversary: yesterday, the very day of your surgery, was the 6th anniversary of my second mastectomy and lymph node biopsy.

    I am sorry your news wasn't better, and that you now will have to enter the chemo championship games, but you will get through the experience. Already, you have two chemo coaches: Victoria and me. I know more of us will appear to help you through. Heck, we can even form a cheer squad and get pom poms and megaphones and form human pyramids in the chemotherapy suite while you are being treated. Rah, rah RAH!

    This I know is true: you will bring to chemotherapy the same panache that you have flourished thus far (think of Cyrano with his jaunty plume waving in the breeze).

    Six years ago today, I was released from the hospital, a crater where my breast used to be. Dangling from the excavation site was a silly bit of tubing and my "cancer grenade,” which collected the blood and lymph fluid...Like you, I had to pour out and collect in a little metric cup. I felt like a ghoulish Betty Crocker measuring the liquid for my Bisquiks from hell.

    And six years ago today, my cheerleaders showed up: my students. They stayed with me all day, being their crazy teenaged selves, and making me laugh so hard that I forgot to take my pain medication. In the evening, two of them drove off to Berkeley with my husband to buy pizzas from Fat Slice (they insisted it HAD to be Fat Slice, because “their pizza has healing power, Ms. G!”). I sat on the bench in front of our house with Lindsey, watching the sunset over the Golden Gate and waiting for them to return. And return they did, the top down on Sandra’s 1979 Beetle convertible, music blaring, and my usually reserved husband singing at the top of his lungs.

    At that moment, I knew that somehow, I would make it through. You will, too, my dear. And we will help you get there.

    Let the healing begin, dear Carolyn. I can’t wait to read your next post, and to swap chemo cocktail lounge stories with you (ask Victoria about the margaritas with Walt and Joel in the Kaiser waiting room. Oh my!).

    Love!

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  6. Dear Carolyn,

    Sorry to hear about your lymph node news. And what a bummer to first hear that they were clear - and then have to hear the real story from Mark! Not great bedside news management from the hospital...

    Despite this setback - I'm confident you will handle your chemo like a pro - and move on to excellent recovery! Count me in as another big C survivor buddy - an experienced member of your team. Your writing is so good - I feel like I'm right there with you as you're crying and laughing through it.

    I send my love and support - let me know what I can do-

    xo,
    Martha

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  7. Dear Carolyn, Wanted to express how moved I continue to be at your ability to convey all that you're experiencing with such grace, humor, and honesty. You are so gifted when it comes to the written word! I feel that I am getting to know you better through reading your entries, in addition to feeling connected with what you're experiencing.

    I'm also impressed with the comments the people in your life are making. They also are gifted writers, in addition to being compassionate friends, humor-filled allies, and fierce warriors sending blasts of "GO AWAY, GO AWAY, GO AWAY!" to the cancer in their own ways. I met many of your special people at your and Mark's wedding, and this is yet another way of witnessing how loved you are by many wonderful, wonderful people. You are a special woman, indeed, to be surrounded by these men and women who cherish you as they do.

    I cherish you, as well!!! Love, Erika

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  8. Nice, Carolyn, very vivid. We're thinking of you and closely following your posts. I admire the humor you find in some of the not-so-nice situations. Keep it up!

    Kit

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  9. Hi darling Carolyn,
    Grateful to hear from Sallie about your blog so that I can easily keep up with your news (and send out lots of prayers) from the East Coast. I'll write you more later, but just want to send you a long-distance hug. Linda G-S, Westport, CT

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