Monthly Archives: September 2015

Post-surgical Hotel Hell


At the hotel feeling like garbage.

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.


Graham and Elsa (in doll form since she couldn’t come). Having friends around is fantastic for my spirits.

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.


My mom’s memory isn’t too hot and my memory was swiss cheese after the surgery and with all the pain meds. This is a lovely representation of us during that week.

The Big Surgery


My big sister humors me when I decide to strike a power pose. So ready to get this thing over with, and SO in love with my ninja pants. These things are ridiculously soft and comfortable and everyone should buy a pair. (

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.


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.


A picture is worth a thousand words.

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.


Finally in my room with a fancy pants side pony. I insisted on taking steps and standing. Scared the pants off my daddy who spent the evening sleeping in the most uncomfortable chair in the world. He’s the best.

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.


Karen Kelly is a brilliant, ridiculous unicorn. This sounded like such a strange idea and brought me immense joy.


Orchids from my besties.


Roses from my bestie.

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.


Look at me! Walking without a care in the world. Everything hurts and I can’t stand up straight. Woohoo!

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.


This isn’t my sister, but she made this. Nothing makes me happier than my niece. We ate lots of pudding together.

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.

Best Recovery Period Ever

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.


My first day back home my friends surprised me by hanging all my art. I cried. AMAZING gift.


Including this gorgeous piece by the spectacularly talented, very dear Christian Beijer (


And these beautiful ceramic butterflies and floating saucers created by my insanely talented friend Jennifer Prichard (


My parents celebrated their 50th wedding anniversary! Way to go mom and dad!!!


This gorgeous, loving, nurturing woman got me out of the house. I was in pain here, and so, so tired, and kind of whacked out, and I was incredibly happy to see her.


Julianna took me to Johnson’s Backyard Garden to volunteer and get my hands dirty in some vegetable bagging. Found this happy guy along the way. (


My BFF from high school brought her girls to visit. It had been entirely too long and we’re never doing that again. Ever. Love her so much!


Stuffed my niece, Lilly, with ice cream. It was summer and she’s constantly on the move, and I was gone a lot, and it seemed like a great way to spend time. Sorry, Moni, I know y’all try to go low on the sugar, but I would totally do it again. And we did the locally made, incredible ice cream at Lick, so it kind of doesn’t count. (


The next week my BFF’s from college came to visit. We bought matching skirts and someday I will play the cancer card and make them wear them out with me…in the same city when we’re all together. These women are hysterical.


Our other BFF was unable to make it, but had her assistant photoshop her into the photo. She flew in for the night by way of Las Vegas the next week.


Had a ridiculously fun night of Yacht Rock with some of my absolutely, positively, favorite ladies in the world. They take care of me ALL the time. A lot.


JT, my roommate and sister wife, made me the best piña colada ever, and put up with me as I recovered. Thank you very much!


I went out to some of my besties farm quite a bit and got real peaceful in the country. This is Texas, y’all, and it’s beautiful. Not pictured is my gorgeous hostess who is taking the photo, but her brother is standing behind the Jeep and I love him a lot, too.


One of the friend loves of my life took me to Las Vegas for 13 hours. We saw Le Reve and it was SPECTACULAR!


Then she took me to Britney Spears. So exciting. We did it to be campy, but during the performance she learned I’m actually a fan. Mainly because I knew the words to all the songs.


This is us. She left Burning Man to do this for me. Not pictured is dinner at Tao and Snoop Dog dj’ing. Come hell or high water she was going to make sure I had a fabulous hurrah before my surgery. Job well done. Well, well done.


The next day we flew to San Francisco. I just like this photo of her sitting on the Sky Train.


From SF we drove to Healdsburg, in the Sonoma wine country, to stay with a dear friend. Such good quality time with people I love a whole bunch.


Two days later we drove back to SF and visited some other besties in Marin and SF. We dined well, we laughed a lot, and got to catch up with the Cali crew. By this point I felt AMAZING! By the way, no one will like this photo, but it was the one I had. Sorry. Love you ladies.


The weekend before my surgical prep week at MD Anderson, a good friend took us out on his boat. It was the first time I was in the water all summer and it felt like heaven. I was plenty healed and figured since they were about to slice me open anyway, that it didn’t really matter. Please note my fantastic necklace by Cristina Pessoa. It’s the church on the quadrado in Trancoso, Bahia, Brazil, and it reminds me of many happy times. (


The perfect late summer day in Austin. I love them so much.


And the next night THIS happened! Gorgeous friend from SF came to Austin! My love cup is running over!


The weekend before my surgery we had a big ‘ole party at Justine’s. They accommodated a massive group of some of my favorite people in the whole entire world. I was schnockered and hadn’t felt that good in over a year. This is one of my oldest friends. (


And these people I love very, very much. Like family. I see a Juarez de Clampett and a couple of schnauckles. La familia.


For some reason I don’t have photos of the fun stuff we did together, but I don’t know if I could breathe without these two ladies, and of course this gentleman. This is an old photo taken right before my 40th birthday. I can’t even describe what a good time this was.


And this fabulous creature on the right (and of course KK in the middle already pictured multiple times) who was VERY pregnant at the time. I can’t believe I don’t have a photo because she was one of the cutest pregnant ladies I’ve ever seen in my life. She took me on lots of walks and made me laugh. A lot.

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.