SIMON'S PLACE | Treatment: Surgery

TREATMENT: Chronicle of a Surgery

These are my recollections of a day long-anticipated. Surgical removal of Simon's "bulk" disease, i.e., his two main tumors. Not the end of his arduous road, but an important hurdle to cross before tackling the nasty metastases that have invaded his bones. A big deal, in an even bigger picture.--Mary

Tuesday, July 2, 9:00 pm, Breakfast

Simon and, of course, Miriam have a "bedtime breakfast" to get ready for surgery and Simon's "NPO" order (nulla per ora, the Latin words meaning "nothing by mouth"). Apricots, mango, and a bowl of cereal with milk. Yum.

9:30 pm, One last sleep before Simon's surgery

We read Simon's current favorite book "Alphabet Adventure" (a gift from Kip and Noelle Ehrenberg). He goes to sleep about 9:45.

Wednesday, July 3, 6:30 am, Waking up, getting ready

Miriam and Grann (my mom) get ready to take Miriam for the day to Linda's house. Simon starts the day with yet another viewing of his favorite Disney flick, "Hercules". Heroes. I guess it takes one to know one.

8:00 am, To the hospital

Simon, Markus and I arrive at Pediatric Out-Patient Surgery (a place that feels as regular as the local grocery store by now). Familiar faces perform temperature, blood pressure and weight checks. Stepping off the scale at 41.3 pounds, Simon declares: "Every time I come here, and get checked, I'm bigger than the last time!"

Simon, who has NEVER consented to a gown, is asked if he'll change into one. No. The nurse says that's cool, and Simon returns to Barney and Puff the Magic Dragon on video.

Markus and I are briefed on the procedure by nurse Jennifer. Which side will the operation be performed on? Hmm. Well, the primary tumor is on the left side. The lung nodule is on the right. I sign the consent form for the operation and for possible blood transfusion. The form asks me to give my relationship to the patient. Mother. "That's the hardest-earned title I'll ever have," I comment. Jennifer relates.

We tell Jennifer that we'd like to see the tumor "in person" and that we'd discussed this with Dr. Geiger. Not pictures. The real thing. She's appreciative of our request.

9:30 am, Already running late

Betsy, a nurse we met and bonded with back during Simon's diagnosis month in December, takes us down to the holding room outside the surgery area. We get occupied with books and toys. Grann joins us, surprised Simon isn't already in surgery for his 9:00 am time. We catch wind of the fact that Simon's chart hasn't arrived. Disconcerting. The anesthesia team ask us generic questions about Simon's previous tolerance of anesthesia. We wish they could read his actual history.

10:00 am, Going in

But things are delayed enough that we go along with getting started. Mary puts on a "bunny suit", hat and shoe coverings to carry Simon back to the operating room. Simon is mellow and unconcerned.

This O.R. (operating room) seems bigger than the ones he's been in before (bone biopsy in December and two Broviac central line placements, all relatively brief surgical procedures). Simon sits on the table, and the staff in the room drop their casual conversations in deference to the patient's arrival.

Simon spies a wall of CT scan images. "Look at that, Mommy!" I reply: "What do you think that is?" Simon: "Me!"

Looking around, Simon notices a woman arranging items on a table. He sees low green tubs and some purple plastic things. "What are these?" I suppose they are containers for the tissue that gets removed in the surgery. The woman uses her back to block Simon's view subtly. Nurse Jeff stands behind Simon, directing his attention away from the objects of his curiosity. I reply: "Those things are going to help the doctors with taking your tumor balls out." Jeff affirms the answer.

We haven't made a big deal of telling Simon he'll be cut open during surgery. It seemed like something he'd understand better after it was over.

The anesthesia team hook into Simon's Broviac with IV tubing. They test about 2 feet of tubing for Simon's "blood return". Simon and I are impressed to see the red blood fill such a long tube. Sure that his line is in the right place, they flush with saline and attach the syringe of Propofol.

Seeing the pure white Propofol, Simon says, "That's my sleepy medicine." The anesthesiologist says he's right and very smart to know that. "It's sleeping milk," he elaborates. I reply: "Actually, they told me it's soy-based, like tofu." Simon: "Then it's soy milk!"

Jeff begins to say softly into Simon's ear, "It's time to think about your favorite things, your favorite colors, all your favorite people." I hold Simon so his head can rest on my shoulder. The anesthesiologist administers the Propofol. Jeff: "Sweet dreams. What a sweet child." I quietly say, "I love you, Simon. You're with Mommy" until his head grows heavy. I help Jeff lower him to the table. One last kiss on his beautiful forehead.

I say I wish they'd find Simon's chart. He says they've found it. That's what that phone call was about. (What phone call? I wonder.)

Jeff escorts me out. It's amazing how confounding and twisted the way out feels. Walking in with Simon clutched in my arms, absorbing my deepest wishes for his safety, does not provide a reversible memory for the geography. Jeff lays on a comforting arm and directs me around the corners, praising me for being such a strong mom. He has a way of making me believe him. (I remember the first time I took Simon in for a surgical procedure in December and how tearfully I returned. That seems like a long time ago now.)

10:20 am, Time to wait

Markus, my mom, and I head over to the family waiting room. We settle in and leave Mom with instructions to nab a table when one comes free. Markus and I go to a coffee cart to get a late breakfast for him (I'd snuck a bowl of cereal at home). We take a short walk into the steamy hot outdoors.

Upstairs back in the waiting room, we find Mom at the table by the phone. Perfect. We settle in. Mom and Markus read. I make a few phone calls.

11:00 am, An update

Word comes that they're "in" and just getting started on the adrenal site. Mom and I play the card game SET. I notice my underlying tension as I react with spikes of aggressive agitation at the frustrating parts of the game. Mom and I aren't actually competing with each other, but the game is challenging my calm.

11:30 am, Another call

Another call comes to say that it's looking messy in there. There's a lot of stuff wrapped around vessels. It's going to take a while. Probably another 2 hours.

Our spirits dampen, thinking about all that cancer and the fact that we'd been primed to hope for a tumor that was keeping to itself. We sit in silence and slowly share our thoughts. I confess a tiny part of me is still waiting to hear, "Cancer, what cancer? We looked inside. Simon doesn't have any cancer." Mom and Markus say they're glad the surgeons are taking their time to be thorough.

Noon

More SET. Markus gets us some hospital cafeteria sushi rolls, and we eat lunch. He puts on a pot of coffee in the machine in the waiting room.

1:00 pm, It

Jennifer, our liaison nurse, arrives. "It's out. Come to the holding room." Markus and I leap to our feet. My mom wonders what's going on. "She's taking us to see the tumor. Want to come?" On our brisk walk to the holding room, I ask if Simon still has his kidney. She doesn't know.

The three of us arrive at the holding area. Jennifer insists we sit to avoid fainting. She comes back with a plastic tub (not unlike a 1 pound deli container). It's the specimen container. She opens it to reveal a mass that would fit in my cupped hand. It has two different-looking parts: one a yellowish gray with some black bumps and stuff that looks like bubbles. The other looks softer, more like a piece of beef liver. We don't faint. We look. We size up this thing. We acknowledge it. The viewing is brief. We leave with a sense of relief that the tumor is NOT in Simon's body anymore.

Jennifer has also learned that the kidney is still there, but they are just beginning to "clean up" the tumor area, and Dr. Geiger can't make any promises.

The report continues to be that Simon is "rock stable" as he undergoes the operation. I tell Jennifer to let Dr. Geiger know that Simon's parents are "rock stable," too.

1:30 pm, Impromptu meeting in the hall

We run into a busy-seeming Dr. Mody and nurse Betsy in the hall outside the family waiting room. Everyone's a bit surprised that Simon isn't done yet. We share our excitement about "meeting" the tumor. We're glad to see Dr. Mody.

1:45 pm, Back to the waiting room

We have that coffee and resume reading and playing SET. Markus asks me to draw a picture of the tumor. I try to recollect what I've seen and put some likeness on paper with a small set of dull color pencils from Simon's backpack and my rudimentary drawing skills.

2:00 pm, Further news

An attendant from the recovery area comes out to tell us that the left side is done and they are "closing up." Markus asks, "What about the kidney?" She says she'll ask, but says she may not get an answer and that the doctor will come to talk with us when it's all over. I say we can wait until later. But Markus can't. I worry about making the surgeon feel pestered. Markus wants real time information, now that it should be available. The attendant says she'll ask on Dad's behalf. Markus and I continue a sharp exchange of our opposing viewpoints. Mom sits between us, "reading."

The attendant soon returns with news. "Should I just tell Dad? Or does Mom want to know, too? He kept the kidney." Waves of relief. This news boosts our spirits.

2:45 pm, Companionship

Ken Phifer, our UU minister, appears, and we update him on the situation. He takes a seat, and we launch into a many-faceted conversation that occupies us all. Ken, Mom, Markus and I almost don't notice the lack of communication from the O.R. as our conversation touches on mutual acquaintances, our trip to Salt Lake City, dynamics of church congregations, the death penalty, you name it. Finally, I can't ignore my inner restlessness any longer, and I call the recovery room, wondering why we haven't heard anything in so long.

The answer comes that Simon's prep for the second operation (the lung tumor) took much longer than anticipated. They have had to place a different breathing tube, one that goes into each lung separately. During the operation they need to deflate Simon's right lung and keep him breathing on his left side only. As they have reported all day, Simon remained "rock stable." I try to picture someone cutting a tumor off a lung that is moving back and forth through respiration. I understand why they want to keep it still while they cut.

5:00 pm, The final stretch

Is this the operation we expected to be over by 2:00? We are still chatting away with Ken when Dr. Mody arrives and joins the conversational vigil. We share our reactions to recent news: the disaster at the wedding in Afghanistan and the terrible in-air collision near the German/Swiss border. The conversation finds its way to yoga, baseball, cricket, soccer.

5:45 pm, Done at last

Dr. Mody really needs to leave but hangs on after a nurse appeared to say it was over and Dr. Geiger would be coming shortly. Mom is hanging on, too, but planning to collect Miriam from Linda's before 6:30.

6:00 pm, The debrief

Dr. Geiger arrives, digital camera in hand. Markus and I realize we recognize the man we met hatless and in plain clothes two days earlier. Ken chooses to remain, and we all file in to a tiny conference room. (I imagine Dr. Geiger presumes Ken to be Simon's grandfather in tow with my mom. No time is taken for introductions.)

He describes the surgery. They have found that the tumor was not on the adrenal but attached to the nerve column near the adrenal gland and kidney instead. He draws us a picture of two points intersecting the nerve column. He also draws pictures of some blood vessels to show what they cleaned off. He says that the tumor was attached to the nerve column, the psoas (a large muscle that links the trunk with the legs), and the diaphragm. When he turns on the digital camera he used to document the operation, a photograph of a small child appears. He chuckles “Not yours…” and skips forward to pictures of Simon's insides (which mostly look red and shiny to me). I wonder if the involvement of the psoas muscle is partly why Simon presented with a limp on his left side.

He indicates that Simon may have lingering effects from the operation, with possible damage to the nerve column at the points where the tumor was removed. This could cause weakness and/or pain into his legs. He says another possible effect is scoliosis because of a shortening of the muscles from scar tissue after the operation.

The lung tumor has come out via an incision near the outside edge of Simon's right scapula. There are also a couple of small holes that were used to insert a camera. A similar type of scarring and possible scoliosis could also occur from this part of the operation. Dr. Geiger jokes that the two curves could end up balancing each other out.

Dr. Mody asks how completely Dr. Geiger thinks he was able to get the tumor out. Dr. Geiger says he's calling it a full resection. It is interesting to observe the doctorly interchange, since Dr. Mody is receiving this critical information about Simon's status right there in our presence. We all conclude that the operation was more successful than we had hoped it could be. Simon is considered to be in a "very good partial remission."

6:20 pm, Finding Simon

Mom leaves to collect Miriam. Ken leaves after over 3 hours of keeping us company. Dr. Mody leaves for his prior commitment. Markus and I gather our stuff and head into the recovery room, where we are greeted by a familiar nurse named Rory. She tells us Simon is awake.

We go to him, touch him, and tell him we are there. He is in and out, but he seems to notice us. He is quiet. After 8 hours with tubes in his throat, he probably doesn't feel like talking. We hold his hand, and he weakly holds back. We "admire" the tube in his nose and become aware of the tube from his chest. His finger glows red with a pulse ox meter. He dislikes the moist oxygen blowing into his face. We try to give him a gift we've been saving up: Donald and Douglas, two steam engines from the Thomas the Tank Engine series (something he's been coveting for a long time). He barely fingers the small train. We feel a little silly for trying to give it to him when he's so out of it.

After a while, he struggles to speak to us. "Poo-poo!" is what he whispers. Knowing that his bowel was displaced during the surgery and that his epidural might make it hard for him to have a bowel movement, we smile at this idea. Rory places a pad under him so he can go if he needs to. Simon thinks this is pretty barbaric. We all think it will be a while before he can really poop. (It turns out he can actually poop a mere 10 hours after the operation.)

Rory lets us know that Simon can skip the Intensive Care Unit and head straight to the 7th floor. We are glad to hear that we can forego this part of the "adventure". Eventually, Simon is settled into his hospital room. The day of the surgery is over, and the healing process can begin.