If you haven’t read Part 1, you’ll want to begin HERE.
I came home from the hospital on the afternoon of Friday the 21st, feeling mighty proud of myself to be up and about only four days removed from major surgery. Of course it was difficult to move around easily—I wasn’t yet able to put on my socks and shoes—but my surgeon, Dr. K, and his team of residents warned me that it would take some time.
Meanwhile, I was still waiting for my plumbing to get fully functional. Part of the problem was the pain I felt whenever I tried to go; even deadened somewhat by the Percoset they gave me, it still hurt. The other part of the problem was that everything felt really, really tight. My stomach was swollen, but I’d been told it was due to the surgery. A lot of skin and muscle had been cut and retracted, and it would take time for the swelling to go down.
As the weekend progressed, though, I wasn’t so sure. It became harder to move around. Getting up off the couch was a major physical feat, and I would get some sharp pains in my torso. They had told me to keep walking, so I’d pace around but have to pause and concentrate to get a nice full breath. At first I attributed it to some kind of gas buildup, but then, as I lay in bed Friday night, my imagination took over. I envisioned my bladder expanding into my other organs, restricting their functioning; I pictured my bowels knotted up beyond function or repair. I could feel myself break into a cold sweat of panic.
When a small breakfast of tea and grapefruit came back up, I phoned the on-call urologist, and she told me to sip water throughout the day and keep walking.
Later that day, I noticed that my legs were swelling right above my sock line. A quick trip to the internet gave me the word edema, or water retention. It was a common effect of surgery.
It was a relief, but relief was temporary because I was really, really uncomfortable. I started to worry that I was retaining too much water when I saw that I was bloating out in different parts of my body (more on this later) and when I stepped on the scale to see it read 197 pounds—about fifteen above my normal weight.
Sunday was more of the same, so on Monday I spoke with Dr. C, the Chief Urology Resident who was a member of my surgical team and had been seeing me regularly the week before. I described my symptoms to him.
“Well, I don’t hear anything really alarming, but why don’t you come in today and we’ll have a look.”
Later, down at the office, a nurse practitioner named Teresa inspected my belly.
“This looks like edema, but I’ll have the doctor come take a look.”
“There’s something else,” I said and then delivered those four words that every nurse longs to hear: “My penis looks weird.”
She was unflappable and didn’t miss a beat. “What does it look like?”
I showed her, and she assured me that it, too, was just water retention that would eventually go away. She left to go find my doctor.
A few minutes later Dr. K walked in.
“Well first of all, there’s some good news,” he said. “Everything we took out was mature teratoma. Totally benign.”
Somewhere in the back of my mind I knew that the pathology had probably been completed, but I had not allowed myself to think about it. Now here it was, and all the dread that had built up in my mind about it evaporated in a flash. It’s tough to capture the joy of that moment. Shannon and I looked at each other, and on cue our eyes welled up. I could feel my throat go tight, and it wasn’t until then that I realized I had fully expected the news to be completely different; I was convinced that they would see something they didn’t like in the biopsy and that somehow—and I wasn’t at all sure how—I would have to make it through three more rounds of chemo.
But no. No more chemo, no more cancer. Everything benign.
And suddenly everything between that very second and that afternoon back in October when my oncologist walked into the exam room and said, “Your numbers are up” just melted away, and I could feel, for the first time in a long time, my life start to come back to me.
Even now, as I write this, the relief of that moment is so powerful, so palpable, that I can feel the tears rising steady as a chant. Cancer free, cancer free, cancer free.
“Now let’s have a look at that belly,” Dr. K said. He poked around a red patch that I hadn’t noticed before.
“There might be a little infection below the skin. I think I’ll pull a couple of the staples so it can drain, and I’ll send you home with wound care instructions.” He looked up at me and smiled. “After the big news, you can handle that, right?”
“Why don’t you hop up on the table.”
I had been dreading the “staple removal” stage. It didn’t look like they were coming out without some kind of fight, and I worried about just how much of a fight they would put up. When I was in the hospital, I asked one of the residents what it was like, and he said, “No big deal, not a problem.” When I then asked him if he’d ever had staples taken out of him, he looked at me sheepishly and said, “Well, no…”
I lay down on the table, and Dr. K stood over me with the removal tool that looked angular and sharp, like an angry metal bird who liked to bite.
Having staples removed is not pleasant. It’s certainly not the worst thing I encountered—not even close—but it’s not “no big deal.” Each tug was accompanied by a sharp little pinch, and for the several staples that got stuck on their way out, there was a little bit more.
After Dr. K removed a few down where the incision swerved around my belly button, he took a cotton-tipped swab to probe the opening a little.
And then suddenly I was gushing fluid. Like cutting a hole in a waterbed gushing.
It burbled up out of the wound and spread down my pelvis and sides. Dr. K and Teresa started ripping open gauze packages to staunch the flow. At first he thought it was a pocket of infection draining, but it kept coming. I made the mistake of looking down, and I could see that the bottom part of my incision was gaping wide.
“This is a big wound,” Dr. K said evenly. “I’m going to want to readmit you.”
“Readmit me to the hospital?”
Sonofabitch was what flashed through my mind. I was this close to going home…
Then he started talking about a possible torn fascia, which could be serious. He told me that if the fascia below was torn, they’d have to reoperate to close it up. He asked me when I’d last eaten, and I told him that I had a sandwich a few hours earlier.
“I need to look around in there, and to do that I need to get rougher with you than I can here,” he said. “I’d like to get you in an OR tomorrow morning.”
The liquid kept coming, and I have to say that I finally felt some relief from the pressure that had been building this weekend. Still, though, it was a pretty messy. The gauze pads were useless; Teresa had gotten towels which I held over my midsection, and both were getting soaked with this pinkish-yellowish fluid. I just lay there as he told me that he’d get me admitted and be right back.
So there I was, about to be readmitted, looking at (at least) one more trip to the operating room. Once again I was dumbfounded at how quickly things turn. A few minutes earlier I had been told I was free of cancer and was halfway out the door and back to my life. Now, who knew what was coming?
The curtain of the room parted and Dr. C came in. He’d spoken to Dr. K and wanted to have a look of his own.
It became quickly apparent that whereas Dr. K was reluctant to “get rough” with me, Dr. C had no such compunction. He snapped on a glove and started to probe my wound. And by “probe” I mean he really dug around in there. I groaned and clutched at the exam table.
“What’s wrong?” he asked mildly.
Uh, your goddamn FINGERS are in my BODY.
“Hurts,” I managed to squeeze out.
“I’m not feeling a fascia tear,” he seemed to say more to himself than to me. Then he went right back to digging around inside me.
He stopped and told me that he’d like to get something called a wound vac on me when we got to my room. He explained what it was and what it would do, but I was too distracted by the knifing sensation, which was slow to ebb.
“No surgery?” I croaked.
“I don’t think so,” he said. “I’ll be right back.”
I was still panting when he returned.
“Okay, here’s what’s going to happen,” he said. “I’m going to pack your wound with a field dressing and then we’re going to walk briskly over to the hospital. When we get to your room, we’ll get some pain meds in you so that I can do a more thorough exam.”
“You mean like walk walk? Like literally walk?” That “more thorough exam” part also stuck in my head, but I had to take things one at a time here.
He looked at me. “Do you have a better idea?”
I had several, and not one of them involved me getting up on my feet. I had made that walk before when I had some pre-op tests done. It was about five minutes through a parking lot. I looked down at my body. I needed a new towel.
Dr. C packed the wound and started layering big gauze pads on top of me until my wound bulged to about the size of a softball. Then he slapped a giant abdominal pad over it and taped the whole thing down tight. He reached into a cabinet and tossed me a clean towel.
My sweats were soaked almost to the knees, as was the back of my shirt. I had a gaping, wound in my midsection that was gushing some kind of fluid. And now I was supposed to get on my feet and walk “briskly” for about three hundred yards.
But then I looked at Dr. C, who had not a shred of doubt that I was going to make that walk. Emboldened by his confidence in me, I hiked up my soaking sweats, held the towel close over my dressing, and stood up.
He was a fast walker, and I did my best to keep up. It was a little difficult, because we were barely out of the building when I could feel that the dressing had given way and fluid was dripping down my leg. Halfway across the parking lot I looked behind me and could see a little trail. We hit the hospital lobby and made a beeline for Admissions.
“Have a seat over there,” he said, and turned to one of the admitting nurses.
I sat down for a few minutes and considered my soaked lap. I could feel the fluid rolling down my body, down my legs. When Dr. C called to me, I stood up and cringed at the giant wet spot on the seat. A puddle immediately began to collect on the floor between my legs. I looked over at the one other person in the waiting room—a man who stared at me, wide-eyed.
We hustled up to my room, where a nurse was waiting. He inserted an IV and started some pain meds while Dr. C was fiddling with some equipment.
“Okay,” he said. “Let’s have another look at that wound.”
Let me confess here and now that I would not hold up under torture. I always suspected as much, but I didn’t know for sure until I was on the bed in my room and Dr. C had his fingers in my body again. The meds had kicked in—I knew that much because my head was swimming—but it didn’t do much against Dr. C’s insistent fingers.
“Everything feels pretty good,” he said, which I mistakenly interpreted as meaning that he was finished. He wasn’t. He went back in twice more.
Finally, he was done. He packed the open wound with some foam and attached the wound vac, which was a little nozzle taped down tight over my belly and attached by a long thin hose to a portable unit. Once he got it fastened and turned on, pinkish liquid started to fill the reservoir tank on the unit.
It filled fast. Five hundred milliliters in about twenty minutes. When they changed the tank, they had to clamp off the suction, and a few seconds after they did, I could feel liquid seeping out from the tape around my wound and rolling down my body.
I filled a lot of tanks that night. The first couple took 20-30 minutes, and then they held steady at about an hour each. At some point, they brought in a big red box that said HAZARDOUS WASTE, where they deposited the full tanks. I wondered about that “hazardous” part; I had, after all, left a trail of this stuff across the parking lot and downstairs lobby, not to mention the puddle in Admissions.
Once they analyzed the fluid, there was a diagnosis. I had something called chylous ascites (KYE luss uh SITE eez), which was a possible complication of this surgery. What happens is that the channels that convey the lymphatic fluid get compromised during the surgery and don’t seal up, leaving the fluid to continue to flow and collect in the body. It resolves on its own, but timetables vary—days to months. It’s also exceedingly rare, occurring in only about 2% of patients who have the surgery. I knew it was rare because every doctor who visited me in the days that followed—Dr. K, Dr. C, a resident named Josiah and a medical student named Dustin—went out of his way to tell me just how rare it was.
I wasn’t sure what I should take away from that stat. Why should I care that it happens to only 2%? All that mattered right now was that it was happening to me.
Meanwhile, I continued to leak like a tanker run aground.
It was weird watching those tanks fill up. Those times when our bodies betray us have to be the most disorienting sensations there are. Our very identities come under siege, and from within no less—a civil war between our mental and physical selves. We all face it at one point or another and to varying degrees. Maybe we sweat uncontrollably in an interview or have a sudden gas attack in a crowded elevator. Or maybe it’s more serious—some cells decide to start growing and not stop. For sure, I’d been at war with my body since last October, but this last bit here was too much. I lay in bed that night and the next day and watched that fluid collect and collect with no end in sight, and there was nothing I could do except put my head back, close my eyes, and hiss, through clenched teeth, “STOP LEAKING.”
Not very effective.
They put me on a thrice-daily shot of Octreotide, a hormone that would reduce the production of the lymphatic fluid. They also put me on a no-fat diet to help accomplish the same. That’s “no-fat” as in zero fat, which is a lot different from “low-fat.” My meals consisted mainly of juice, tea, skim milk, and a plate of something like this:
They also started to give me a tiny sip of something called MCT oil every three hours, which extended through the night. So, every three hours I’d be awakened to drink a tiny amount of oil.
Eventually, my leak slowed. The tanks started to take about three hours to fill, and then on Tuesday night, they put a new one in that didn’t fill until twelve hours later.
On Wednesday they removed the vac and packed the wound. I kept walking but had to bring a towel along, because the dressing would only hold up for about an hour before it needed to be changed again.
My nurse that day, Juna, found wound bandages that were little plastic bags with a spigot on the end. She figured this would work better than gauze because when the bag filled up, I could just empty it.
We had to empty it twice that afternoon.
Around dinner time, Josiah came in with the new plan. I would have a CT in the morning and they would insert a drain in my side. I wasn’t crazy about the first part and even less enthused about the second. At this point, however, I kept telling myself, cancer-free.
The way I figured it, this was way more annoying than dangerous. In my mind, Cancer was pissed that I won and was giving me one last kick on my way out the door. If I handled everything that had come before, I could handle this, too.
The next morning when I woke up, the bag was almost completely dry.
Josiah was surprised but wanted to see how I did after eating and moving around. In the meantime, he canceled the CT.
After breakfast and countless laps through the hospital, the bag remained dry.
On Friday morning they decided to discharge me. Josiah came in to go over some instructions. Something had occurred to me, and I wanted to ask him about it.
“So I have a question for you,” I said.
“Now I know this surgery is pretty rare, and this condition is even more rare, right?”
“So, are you guys a little excited about it?”
I’d expected to encounter an immediate denial and effusive reassurances that my care was foremost in their minds, but he surprised me.
“Oh, yeah. That fluid was really something. I mean, to actually see it. Most of us will just read about it in a textbook.”
Well, glad to have helped out with their education.
Then he got down to the discharge instructions.
“For the next two weeks, we want you to maintain a no-fat diet.”
“Also, we want you to continue to take the oil every three hours.”
“And you’ll need to give yourself a shot of Octreotide three times a day. Your nurse will show you how to do that.”
My friends Barb and Deb were visiting that morning, and I immediately confessed my anxiety about giving myself a shot. They tried to come up with possible solutions—driving to my doctor and having a nurse there do it, talking with someone in the Nursing Department at our college—but the more I thought about it, the more I decided that I didn’t want to puss out before I even gave it a try.
My nurse that day, Sil, came in with some needles and saline solution. Once she laid out the materials and I saw them right in front of me, I felt myself starting to freeze up. But then I felt something else—something gathering inside me. It wasn’t anger, exactly; it was more like a fed-upness with things. I’d been poked, prodded, poisoned, scanned, injected, cut open, and stapled up over these last several months, and I’d be damned if I was going to let this last wrinkle get me.
I tugged my sweatshirt up and over my head. “Okay, let’s DO this,” I said.
I’ll spare the details of the self-injection, though I will say that sticking a needle into my abdomen ranks very high on my list of things that I hope to never have to do again.
So now I’m back home, eating my zero-fat diet, drinking my oil, changing the dressing on my wound, and giving myself a shot three times a day. I’ve got an appointment next week that I hope will put an end to three of these (I’ll still need to change the dressing), but if they have to go on a little longer, I can do it. And if something else comes up and I need some other procedure, I can do that, too. All of these scars have got to count for something.