I’ve decided to refer to my nightgowns as “dresses.” “I have guests coming, please bring me a clean dress.” Or, “It’s time to do a little walking, let me grab a robe to cover my dress.” The day they removed the epidural in the hospital and I was able to shower, they also said I could change out of hospital gowns into my own clothes. Sliding the nightgown over my head, belly epically swollen, bag rustling, I had the momentary realization that getting dressed had just become a lot more challenging.

The following day I was discharged from the hospital in an unseasonably hot robe and an ill-fitting “dress.” My mother and I drove to a hotel a mile and a half away where I would recuperate until Dr. Skibber decided I was safe to go home. For at least the next week I would be sharing a single room, double queen beds, with my mother. I didn’t feel horrible, but I didn’t feel good. The room had a mini fridge, but no other way to prepare food. The hotel had a small cafe menu, but Im on a very restricted diet and have to eat small amounts multiple times a day. My mother loves me, but she isn’t a feeder and has never put too much thought into food. To boot, the cable tv situation was paltry with seemingly basic stations, and for some reason this Marriott had no movies on demand. Luckily we had a handicapped bathroom, but the water temperature maintained an almost scalding heat unless turned down significantly, at which time it ran cold. To be fair, the room was big, clean and had great lighting, but still my survival in these less than optimal circumstances was assumed, definitely not guaranteed.

Historically, on the amount of pain meds I was consuming, if I don’t maintain adequate nutrition I puke. Violently. Following a major abdominal surgery where your rectum is removed and part of the small intestine is pulled through deep abdominal muscles to the outer wall of the body to create a stoma, the very last thing in the world that should happen is vomiting. So far I’ve made a few mistakes dietarily; my intestine is inflamed, damaged, and swollen, and it’s important to take it slowly the first 6 weeks post-op. Leaving the hospital the first day I was hungry and nauseated, and there was zero food at the hotel. In a desperate move to not puke, I made my mom drive through a burger place. Big mistake. It gave me gas (which sounds like that fart goop in the plastic tub when it comes out of a stoma), indigestion and made my stomach hurt so that I didn’t want to eat again that night. I puked at 5:30 the next morning and stoically, or dramatically, proclaimed that I had probably damaged an internal organ. We called my doctor and no damage had been done. My proper feeding became a constant topic of conversation and concern, as was my medication schedule, water intake, stoma output, and daily Lovenox shot. One would think these things take up more time than they actually do.

The following week I only left the hotel to drive to the hospital. Follow up reports were amazing and my doctor continued to call me his All Star. Otherwise, I watched HOURS of television, walked up and down the hall a lot, and medicated myself through the pain. Thank god my friend Graham came to visit and gave me lots of love. My mom kept bringing me food that I barely ate and I learned how to change my ostomy on my own and take care of myself. The week sucked and then I got to go home.

Here are some post-surgical survival tips:

Log roll to get out of bed. Roll to one side, lower your legs and push up. Similar methods work for getting into bed.

Drink lots and lots and lots of water. Your system has been dosed with massive amounts of chemicals. Flush them.

Walk. Frequent short walks increase blood flow, decrease stiffness, and they, too, help move the chemicals through your system more effectively.

While we’re at it, EAT. Small meals every couple of hours. I lost too much weight in one week and became weak. Funny the way that happens. Bland, white foods are fabulous.

Cut yourself some slack. This is hard, and your body has been beaten and mangled. Rest, cry, take long showers (seated preferably), laugh with friends, and believe that this will pass. It’s all you’ve got.

I think I woke up in recovery smiling, and I vaguely remember waking up happy. I now know that can be attributed to the epidural. The blessed nerve block that denied my body the pain it should have felt kept me somewhat numb and blissfully ignorant of what would come 3 days later. Dr. Skibber and his Fellow Jordan walked in as I was opening my eyes and the first thing I saw was his very pleased smile. Obviously things had gone well.

“Left or right?” I asked.

“Right.”

One simple word began a celebratory day in recovery as I phoned, texted and communicated with friends and family in a highly drugged post-anesthesia delirium. The surgery resulted in the best possible outcome they had ever presented: temporary ileostomy in my preferred location, J-pouch, no plastic surgery consult needed, in and out in 4 hours. The questions of the last 4 months were finally answered, and I had come through swimmingly.

All this being said, even with the epidural numbing the pain I became well aware that things were going to be tough for a while. A catheter and the ileostomy bag allowed me freedom from bed pans or excess movement, but I had IV’s in both hands, and the epidural line coming from my back. Rolling left and right initiated a sharp increase in pain, and with the bedrails I was only able to pull myself less than halfway. As I slid toward the foot of the bed due to my head being slightly elevated, I found that trying to push myself upward was near impossible. My abdominal muscles were sliced from below my pubic bone to 3 inches above my belly button, and I found that I could raise my head off the pillows but low neck and shoulders were glued. I was helpless and thankfully at the hands of spectacularly nurturing caregivers.

The days a blur, but I can read through text to see my communications and I’ve been told I actually made a couple of phone calls. Those must have been impressive. I have vague memories of my family, my surgeon and that odd sense of happiness. They took me to my permanent room around 9:30 that night where I insisted on sitting at the edge of the bed, standing, and walking about 10’ to my bathroom and back, and then laid down for the impossible hospital sleep of vital signs every hour, the frequent loud alerts of O2 monitors, and the nurse encouraging me to breathe deeper. My dad slept next to me in the worlds most uncomfortable chair bed and snored. Everything was going to be okay.

The following morning, epidural still firmly in place, I rolled over to sit on the edge of the bed winding my arms through the IV’s and my legs around the catheter bag. I didn’t feel great but it wasn’t that bad. I kept checking out my long incision and empty ileostomy bag thinking neither one was as bad as it should be. My spirits were still high, much like myself, as I listened to my father insist that I sit back down on the bed and wait for the nurse; he had gone to get coffee and came back to find me standing on the side of my bed trying to unplug my IV pole so I could walk. He almost fainted. And that’s how the day went, I struggled to adjust myself in the hospital bed, occasionally sat on the side, took a few walks, ate jello, sipped water, watched my mother hang luau decorations on the wall at the insistence of a friend, and tried to watch tv despite the world seeming like a very strange and distant place. I was killing it.

For the next 2 days my parents traded places, doctors and nurses came and went, and I waited with dread for the day they would remove my epidural.The ostomy nurses instructed me on the basics of my ileostomy while I nodded off, Dr. Skibber called me his All Star patient, the pain management team continued to marvel at my low pain levels and response to the epidural, and the nursing staff expressed gratitude that I was emptying my own bag, walking myself regularly, and chatting amiably with friends and family. Bear in mind I was in a post-anesthesia, pain med fueled, under slept haze, and because I always say that “perception is reality,” I perceived that I was having a fine time.

On the down side, I hate sleeping on my back and it was painful to try rolling to my side or attempt to lay there, so for 4 nights I hardly slept. The third day post-op my IV tower tipped while I was walking and I had to grab it to stop it from falling over; I felt a sharp pull on my stomach and was terrified I had given myself a hernia or torn something inside (my doctors assessed and I had not). My abdomen, things, buttocks and low back were swollen to epic proportions, and I found myself cradling my belly like a pregnant woman. I feel now, between my experience with the epidural, abdominal incision, undercarriage pain during radiation, and large swollen abdominal area, that I can truly relate to all my child bearing friends. Instead of giving birth to a bouncing baby boy or girl, however, I gave birth to the freedom from the evil oppression of my cancer.

Then came Friday and they told me two things I didn’t want to hear. They were removing the epidural later that day and I was going to be sent home with a blood thinner requiring me to give myself a shot in the stomach everyday for 25 days. I couldn’t tell you which one horrified me more. At this point, to be perfectly honest, I had become pretty nonchalant about my pain levels. I was told to expect pain after the epidural was removed, but so far I was a walking medical miracle of sorts, or so I thought. They removed the epidural, fed me some oral pain meds, and within 2 hours I was shocked to find myself not only experiencing a normal human pain response, but one that far exceeded my every expectation of what white, hot, blinding pain looks like. Thankfully, the hospital is a place with loads and loads of super duper pain meds and people who are happy to supply them. With some norco every 4 hrs, IV morphine for break through pain, and tramadol, I was able to make it through the night, eyes twitching and speech slurred.

Luckily for me, that same day they removed my catheter and I was able to take my first shower. Don’t ever let anyone ever tell you the first post surgical shower is anything but heavenly. Even with the pain, I smelled clean and felt like a million bucks…for 2 seconds. My sister drove in from Austin to spend the night, and spent the evening slathering my face with different creams, ordering from the hospital cafeteria, and indulging my love of hospital pudding. She made one of the most difficult nights of my existence one of the most memorable. I love her. She’s perfect.

The next day I was discharged to a hotel. I was slightly overmedicated, and a little nauseated. My father and sister were driving back to Austin, and I was left in the care of my mother, in a hotel with minimal room service, only a small refrigerator and an ileostomy I vaguely understood to recuperate momentarily from a surgery that was complicated and complex. I had enough trouble sitting up with the use of my hospital bed. What if I couldn’t get out of bed? Would my mother know how to help me? What if my pain was uncontrolled? What if my bag leaked? How would I eat? These should have been the thoughts going through my head. Instead I was ready to blow that nurturing pop stand and get on with things. Despite an impressively short hospital stay for the surgery I had, 4 days instead of 5-7, the doctors thought I was ready and so did I. Time. To. Go.

Why waste words when I can use pictures. During the 8 weeks between finishing chemoradiation and going in for surgery, all I wanted was to enjoy myself. I did, and it was perfect. The following is a smattering of time well spent. I would recommend this to anyone, because it’s going to be awhile before you feel this good again.

This was my break before surgery. I got stronger everyday after chemo and radiation were over, and eventually I felt better. And not just kind of better, but magnificently better. More healthy and alive than I had felt in over a year. Probably because I had a 99% response to the chemoradiation combo. If you could see me, I’m patting myself on the back. Pat pat.