16. Hospital Stay

Following the radical cystectomy, I moved to the surgical recovery wing of Loudoun Hospital. It took a few days to get there, due to breathing problems that had landed me in the ICU. But once in recovery, the scene reminded me of the tv show, MASH. Lots of patients in pain. Lots of nurses mending bandages. Lots of medical carts flying through the hallways. The environment was much nicer than the show, of course. We had access to television and telephones, for instance. And I shared a room with just one other patient. But suffering is suffering. And there's just no way getting around that.

One of the first things I noticed was the bizarre bed I was put in. It had a deep, plastic lining -- for good reason, I later found out -- and rotated automatically. Constantly. Bottom right would move, then top left. Top right swayed, then bottom left. And it just kept going. So much so that I assumed motion sickness drugs were part of my daily regimen. Why the constant movement? To keep your muscles and blood flowing -- avoiding cramps, spams and worse -- and to massage all the parts that were cut into. All I know is that the movement made it impossible to sleep. Of course, I hadn't slept since I began chemotherapy. So what was the difference? I now was in severe pain. That was the difference.

The next thing I noticed: I had lots of tubes emanating from my pelvic area. Let's see, I thought, there's a plain, old catheter, coming out of you know what, connected to a big bag on the side of my bed. I remember that from my original surgery. Okay, I know what that one does. But I also remember how painful it can be when movement causes the tube to...ouch! It's called a Foley catheter. Gee, if I were Foley, I'd hate for that to be my enduring memory.

Then I looked down and saw another tube, called a suprapubic tube, on my left side, also connected to a bag, although somewhat smaller. What's that for? Just above that tube was another one, called a JP drain, connected to an grenade-like container. Hadn't seen anything like that before. On my right side, yet another tube, connected to yet another bag. A simple stent. To make things worse, all but the traditional catheter were leaking bodily fluids. Oh, joy. Wonder if that grenade really works?

I continued to look down at myself. There it was. A surgical incision, about eight inches long. It began above my belly-button, skipped a small section, then resumed on a line down to my privates. (Of course, my privates hadn't been private since that initial scope with Dr. Gaynor.) Other smaller incisions were on either side of the big line. And they hurt like hell. So, this is what recovery feels like. It sucks.

Then I began to feel another, sharp pain in my lower abdomen. What is this? The nurse came in, and told me that my pain was being caused by a build up of mucus in one of my drains. So she irrigated the drains until the mucus came out, pushing in and retracting saline water through a syringe. Looked hard. And it often took several attempts. But when the mucus finally came out, I had immediate relief. That's when I learned that my drains would have be irrigated every few hours. Problem was not many nurses knew how to do this. They had to resort to instructions Dr. Schenk had written down. So, much of my days were spent helping nurses clean up leaking drains and then having my drains irrigated. Like I said, recovery sucks.

Finally, Dr. Schenk showed up. Ah, I remember that guy. The cutter. He showed Kate and me how to take care of a lot of things, from irrigating drains to keeping tubes in place. But he was firm. Ultimately, I had to do this work myself, and use Kate only as a back-up. He even told Kate to go back to work a week after I got home. If I didn't agree with all this, he wouldn't teach us. Sensing I didn't really have a choice, I agreed. Next, later that day I should get up, take a shower, and walk around. Say what? I could barely move without triggering pain. Okay, he said, but push myself. Meaning soon. Real soon. He wouldn't discharge me from the hospital until I walked, pooped and showered. That's Schenk: tough but fair.

Then the big news: pathology tests showed no evidence of live cancer in the lymph nodes he had removed. That meant what, exactly? No need for further chemotherapy or surgery. I was done. Done? Really? So...from diagnosis through chemotherapy and surgery, I had gone from Stage IV cancer to no evidence of disease, or N.E.D. in cancer lingo. Sweet Jesus, who would've predicted that? What a relief! I just had to recover from surgery, adjust to a new plumbing system, and the rest of my life would be in front of me.

Tempering my enthusiasm: my current condition. I looked like hell. I felt worse. And every hour was a struggle. My family had come to see me. I had mixed feelings about this. I was glad to see them, of course. But I didn't want to scare my boys with how poorly I looked. Apparently, I failed, they later said. My parents were there. Dr. Bob checked in on the patient. Joan and Phil had a wedding to get ready for -- their oldest son and my newphew, Matt -- but drove two hours to the hospital, spent time with me, and then drove back. Kerri, Chris, Cathy and Steve helped take my mind off what I was feeling. Cathy and Steve, in particular, spent a lot of time at the hospital. When I was in the ICU, I remember waking up briefly one night and thinking I had seen Cathy sitting next to my bed. I thought it was a dream. But it was real.

In the recovery ward, I ran into another problem. My veins had collapsed from so many blood draws being done that pain medication couldn't make its way into my body. One night, an escalating series of nurses came in, trying to establish a new blood line, with one nurse in particular -- and I'm bummed I don't remember her name -- being wonderfully comforting. "We've got to get medicine into this darling," she said, finally getting the needle in the right place. The wound nurses, David and Mary, tried a variety of solutions to keep one of my drains from leaking. And Laura, another nurse, helped me finally get out of bed, make my way to the shower, and take a walk -- if you can call it that -- around the ward.

After a week or so, things were slowly improving. Schenk removed one of my drains, a tube so long I wondered where it was housed inside me. With Laura's help, I could take two laps around the ward in a single walk. I cleaned and showered myself. And I otherwise met Schenk's conditions for discharge. So it was to be. Time to go home. I wasn't in a great shape, to be sure. My drains still leaked. My pain was still omnipresent. I was weak. And I didn't exactly look like I was ready for the dance hall.

But I was going home. Ah, what a feeling! Home. I'm home. That's when I almost died.

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Reader Comments (2)


What do youo mean "that's when you almost died" when you got home? Are you going to write more to let us know how you're doing?

I'm Kevin Brown's mother-in-law (Kevin is Cathy and Steve's son). I have stage IV colon cancer that has gone to the liver. I'm recuperating from my second surgery and start chemo next week.

Your story is so real and mimics so many things I've been through. Thank you for writing this.

June 13, 2012 | Unregistered CommenterCheryl Smith

Cheryl...I am so sorry to hear about your condition. Yes, I will continue to tell my story. Hopefully, there will be a happy ending for both of us,


June 13, 2012 | Registered CommenterJim Kurtzke

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