The Immaculate Conception of My Unexpected Child

*this is near and dear to my heart, and a little out of the timeline, but something I needed to express.

On September 22, 2015, having never experienced the maternal pangs of a ticking clock, I woke in an anesthesia induced haze to find I had become a mother. I gazed down at my stomach, swollen and battered, an 11 inch scar rising from my pubic bone to above my belly button, and saw her for the first time. Pulled from inside my body to outside, she seemed so fragile and defenseless, and I loved her. Against all odds and expectations, the urge to protect and nurture her was overwhelming, and she immediately became my baby.

At 43, my eggs had aged and my reproductive organs had been fried by chemotherapy and radiation. I proudly proclaimed to be an aunt to the world, mother to none. In truth, it seemed possible that my next partner would have children from a previous relationship, I might adopt if the right person requested it of me, or perhaps inherit a godchild if the world went topsy turvy, but to birth my own was an idea I had tucked away without sadness or regret. I loved other peoples children, and my childless fate had been sealed May 20, 2015, the day I was diagnosed with Stage III rectal cancer.

Initially my gastrointestinal doctor who had discovered the very low lying rectal tumor during a colonoscopy indicated radiation for sure, possibly chemo, and possibly, but probably not, surgery. Two days later my sister, the fabulous and brilliant researcher, called to discuss the necessity of me going to MD Anderson Cancer Center for treatment. Because of the positioning of the tumor, she insisted that MDA offered the best in “sphincter saving” procedures and had some of the finest surgeons in the world. To say that “sphincter saving” hadn’t occurred to me would be a ridiculous understatement. That the words “slit my wrist the right way” only escaped my lips 5 times during that conversation would also be a ridiculous understatement.

God forgive me, but vanity is my name. I am fit, single, and love a bikini. I vacation in Brazil each year and I want to have more sex during my lifetime. I practice Pilates 2-4 times each week and get plenty of cardio. Until my diagnosis there was never a perfect that was perfect enough. The thought of a permanent colostomy or temporary ileostomy was an unacceptable and unfathomable scenario. During the first meeting with my surgeon at MDA, he guaranteed that I would have one or the other, and that he wouldn’t know which until the surgery. I told him that I would consider a permanent colostomy a failure, and as soon as I was cleared would run for the highest mountaintop in Tibet and spend the remainder of my life in pursuit of self-actualization. My sister told him I was dramatic. I assured him I was not.

During the course of my pre-surgical chemo and radiation, I comfortably discussed my cancer, the pain and discomfort associated with radiation burns, and my emotional state. What I did not discuss, due to increasing anxiety each time it came up, was my future with an ostomy. I couldn’t picture my life going forward with a bag hanging off my body collecting waste. It seemed a cruel reward for what I considered to be, so far, a life well-lived.

Then came the day of the surgery, and 4 1/2 hours after being knocked out, I came to in recovery with my surgeon beaming over me, thrilled with himself at a job well done. The only question I had was “right or left,” and he responded “right,” indicating a temporary ileostomy that would stay with me until I finished my follow up chemo some 8 months later. Looking down at my ileostomy, I found that what I had assumed would be the worst thing to ever happen to me unlocked a door that has since become the best thing. In the moment I saw her, my tiny stoma, through motherhood’s protective, loving gaze, I finally after 43 years fell in love with my perfect, imperfect, now fabulously scarred body. Through adoring the small intestine that had been pulled from inside my body to outside my body to do the job of the entire gastrointestinal system, I finally came to terms with what an extraordinary machine I live in.

Much like true motherhood, my life is different, now. My stoma baby takes care and requires attention. She is noisy at inappropriate times, wakes me up at night, and like I’ve told friends, ileostomies aren’t for first dates or one night stands. In spite of my presumed celibacy during this time, I recently kissed a man at my front door like a teenager, and it was dreamy. Luckily he lives on another continent, so I didn’t have to worry about how I would eventually introduce him to my stoma. More importantly, I was reminded of how perfect those sweet kisses are and how nice it is sometimes to simplify. In early April of 2016, my ileostomy will be reversed, and she will return to her original position on the inside of my body, and for all the life changing wisdom she’s given me, I hope my stoma baby can tell my other organs that they are loved, and we are all in this together.

This is my port. I began my second round of chemo October 26. They say it will be worse. Cancer treatment is relentless. It connects straight into my jugular. No joke. They are seriously tapped in.

In the last 5 months, on multiple occasions, I’ve become aware of the word “persevere” penetrating all levels of thought and emotion. During the most difficult moments it has begun as a whisper, a faint insistence that I get out of bed, take a shower, eat, get off the couch, indulge in basic self care, etc. As necessary the whisper becomes stronger and more firm in its demands that I go for a walk, wash my clothes, phone a friend to make plans, and nourish my brain with something other than “Law & Order: SVU.” In other words, reengage in life and do the things that spark happiness and harmony. Persevere.

I’m finding that perseverance brings the greatest rewards when measured against it’s alternative. The first dose of my second round of chemo was administered last Monday, and it wasn’t easy. A 5 hour infusion of one drug in clinic, then 48 hour infusion of the second that I took out into the world with me until Wednesday. These doses left me with the sensation of having been beaten. I felt nauseated, incredibly fatigued, and lightheaded for 4 days. It was like a bad flu. The kind that keeps you in bed for days, calling in sick to work and groaning with every move. In the end you’ve lost 4 or 5 pounds and are congratulating yourself for effectively taking that much needed cleanse you’ve been promising yourself since New Year’s. In my case, I realized I would be engaging in this cleanse every other week through early spring. Daunting.

But on Friday morning, I set the serious intention of dragging my shambling carcass out of the house to my friends farm for her families biannual, highly anticipated Dia de Los Muertos celebration. As I was mentally committing to this endeavor, my downstairs filled with rain water from a torrential downpour, and as I turned green from nausea, I mentally packed my bag while sucking up water with the shop vac. While frantically moving items from closets that were an inch deep in water and cursing the flimsy cardboard boxes that were never quite unpacked in the garage, I made a quick grocery list and set my time of departure. No matter how tired I was or poorly I felt, I was going to this party because somehow I knew that it was the only way to get better.

This meticulously crafted altar is easily one of the most profoundly moving experiences I have ever known.

The first night and following day I was still fatigued and mildly nauseated, but I was surrounded by friends and beauty. The effect was greater than any anti-nausea medication or pain pill. As I walked through the barn housing a meticulously curated altar where guests were invited to place pictures and mementos of loved ones who had passed, I was struck by the number of young faces in the mix, and I could only imagine how many had succumbed to cancer. And I cried. I cried because in the last month I have often forgotten to be grateful that my diagnosis isn’t fatal and never has been. I cried for the pain of the people who loved them. I cried because I got lucky in spite of the fact that colorectal cancer is so often misdiagnosed and untreated in individuals under 50. I cried because I got to bear witness to the fact that they lived and were loved. And in the midst of that, I began to find my joy and hope again.

Healing spaces are incredibly important when your soul is aching. Cancer happens to make ones soul ache.

Fact: I am absolutely crazy about each and every one of these people.

Persevere. Feel the pain and heartache and sadness that comes with this disease process. Then move on. My scars will heal, the port will be removed, and my body will continue to adapt to it’s new landscape. My picture was not on that altar this year, and for that, and so many other things, I’m grateful.

Hello, I’m home! Kind of.

It is really, really good to be back at my parents house. The fridge is stocked, by their standards not mine but still stocked, with food stuffs. The guest bed I’m sleeping on is soft enough to allow me to sleep on my side, albeit not completely comfortably. Every television is massive and contains hundreds of channels, with Roku attached, to provide ultimate viewing pleasure. It’s easy enough to walk out their front door and up the sidewalk for short bursts of fresh air. And if I don’t want to go outside I can make laps around the kitchen. There’s no place like almost home.

I’ve committed to being here for 3 weeks post-op. It’s not that I don’t think I’ll be able to take care of myself in a few more days, but that I don’t trust myself to say “no.” After years of not being a lady who lunches, over the last few months I’ve discovered that I love to lunch, and I have lots of friends to lunch with. Lots of people have lots of small errands to run, and I’m great at tagging along on those trips. I’ve never minded people dropping in to say hello when they’re in the neighborhood, and in general I’m usually pleased to have company. In the past when people have asked what I’m good at, it hasn’t been organization, problem solving, basket weaving or gymnastics, I’ve always said I’m very, very good at hanging out with my friends. My lovely, beautiful, funny friends. So here I am, 10 miles south of Austin at my parents house, forcing myself to convalesce like a normal person. If I felt better, it wouldn’t be easy.

In the meantime I have great things planned. I’ll finish reading Lonesome Dove, work on projects I’ve been putting off, figure out how I want to proceed in my career when all this is completed. Unfortunately, what I’ve actually been doing since getting here is binge watch tv because I still don’t feel good. I fatigue quickly and have to rest; a short walk outside or full hair washing shower requires an hour of downtime. My abdomen is still very sore, and my back hurts from spending so much time on it. I get achey if I sit up too long, uncomfortable if I lie too long. My friends come over and I’m happy to see them, but their visits exhaust me. I do short rounds of Pilates exercises on the floor, but even foundational exercises wear me out. It’s hard to get dressed because my abdomen is still puffy with edema, and I haven’t quite figured out how to dress with the ostomy, yet, so I spend most of my day in pajamas. As of today it hasn’t even quite been 2 weeks since my surgery, but I’m ready to be better, and right around the time I start getting better, I’ll begin my second round of chemo. Most days I’m my own best cheerleader, but today I’m tired.

WhatsApp’d with my friend Helena today and got this photo. She lives in Brazil and is like a sister. This completely made my day.

And what a difference a day makes. The nurses at MD Anderson let me know that recovery isn’t a straight line to better; some days are better, some days are worse. Funny, I’ve told my home health patients that for years, and I truly believed it, but like everything else living it is an entirely different matter all together. I’m finding that certain things help, and not just the physical body, but the spirit as well. I don’t know about recovery from any other maladies except a torn ACL and cancer, and what I can tell you is that a torn ACL is cake. Cancer touches your soul. It is relentless and in 20 years we will say that the treatments I’ve undergone were barbaric, so I’m finding that my recuperation won’t simply be physical, but emotional and spiritual as well. To quote my oratory wizard roommate, my “snow globe has been shaken,” and it’s up to me to live in this new landscape having gained as much wisdom as I can from an unwanted, oddly beautiful life experience. Here’s how I’m trying to do that:

—I read or watch something inspirational and motivational each morning. Motivating in the sense that through art, politics, science, philosophy or numerous other disciplines, I’m open to new thoughts or ideas that broaden my world perspective and encourage creativity. My absolute favorite source for this is Brain Pickings (brainpickings.org). The scope of content on this website is vast, and I’m often lead through multiple different stages of my day when clicking through the links in each article. Highbrow (www.gohighbrow.com) and the Khan Academy (khanacademy.org). also provide excellent educational resources. When I feel guilty or unproductive having not worked since June, spending time this way reminds me that there are wonderful ways to invest my time that aren’t about the paycheck, and might lead me somewhere I’ve only dreamed of going.

—Exercise is an absolute must. This is not your no pain, no gain, feel the burn workout. I take short and somewhat slow walks in the neighborhood, or if I’m not feeling well, in circles around the house. I do the basic leg exercises I used to give my geriatric home health patients, and they make me tired. When it feels right I ease myself to the floor and practice very foundational mat Pilates, nothing that will strain my abdomen, but exercises that keep my body moving. I can’t stand the feeling of my body stagnating. I’ve also learned that simply moving can be plenty; it doesn’t need to be difficult or challenging to make me feel a sense of accomplishment and physical freedom. And I’m pretty sure it keeps me out of dark pits of despair for my body and everything it’s enduring. The physical and spiritual are closely bound, and the maintenance of one supports the other.

—I tell my stoma I love it everyday, multiple times, and I mean it. It is dumbfounding and oddly moving to see the inside of my body on the outside. I want to care for it and give it a good experience and send it back inside when the reversal happens with a feeling of some sort that the work its doing during this part of my recovery is heartbreakingly beautiful and profoundly appreciated. I mentioned this to a girlfriend who replied I should probably see a therapist. She was laughing, but I am constantly in love with my body these days. It’s ability to heal is spectacular (99% recovery from chemo/radiation?!?), the way it functions is superb, and it continues to get me out of bed every morning and onto my feet. I marvel at the wonder of this beautiful machine, and I’m grateful.

— I write. I’m not a professional, this doesn’t earn me a living, but it’s a way to think about my present situation and assess my state of mind. Any creative outlet helps. With things that draw themselves out like this, I’m finding that I don’t want to emotionally fatigue my friends and family with my discomfort, sadness, constant mental upkeep, and effort to maintain a positive outlook. It takes effort to keep pulling yourself out of the dark places, and it is well worth it. Writing this all down shows me where I am mentally, and more often than not inspires me to seek more out of my day. To take that one extra, often small step toward feeling like the lessons I learn from being beat to shit to treat my cancer will serve me in sensational ways. And sometimes, like yesterday when I wrote about my stoma, I cry, because life is beautiful and tortuous and hard. Who would want it any other way?

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.

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. (pimovement.ninja)

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.

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.

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 (www.cbeijer.com)

And these beautiful ceramic butterflies and floating saucers created by my insanely talented friend Jennifer Prichard (www.jpricharddesign.com)

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. (www.jbgorganic.com)

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. (www.ilikelick.com)

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. (www.cristinapessoa.com)

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. (www.justines1937.com)

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.

The Pain. How do I talk about the pain? What do any of you really want to know about the pain? I obviously don’t care what you want to know because I’m writing this entry anyway.

The pain started as itching at my vulva all the way up the crack of my bottom. Going forward we will refer to this area as my “undercarriage.” Itchy and a little tender, but tolerable, was the way I described it to my radiation oncologist for the first 4 weeks. I was using aquaphor as a prophylactic measure because everyone told me the radiation would cause severe burns and tenderness to the area. I was ready, I was doing fine, and I didn’t think I would really have that many problems. Until the itching got worse. Especially at night. In the still of the night when the house is quiet, the body is relaxed and sleep is only seconds away, my undercarriage would begin screaming with inflammation, discomfort and itching. I stopped sleeping and started getting up multiple times a night to apply creams and salves, sit in shallow, warm baths, and try to position myself just right. The area was also draining because it was raw, and eventually I realized that slow trickle of drainage into that already moist area might be the thing that drove me truly mad. Screaming at the night, pulling out my hair, over medicating mad. But don’t let me get ahead of myself.

Lidocaine ointment will help itching for approximately 10 minutes, shallow baths help while you’re sitting in them (but don’t stay more than 15 minutes or the skin might break down), and Benadryl works for a day or two, but best not to take it with pain meds and sleeping pills, or so they tell you. I promise, there will come a moment when you’re not quite sure you care.

I finally took a look with a mirror as the itching progressed and discovered the cause of my discomfort. All the skin had sloughed off my undercarriage and what was left looked like the skin had been removed and then burned with scalding water. Coincidentally that’s also what it felt like. At this point I was a zombie due to lack of sleep, and suddenly I couldn’t sit. Side sitting fine. Side lying fine. Sacral sitting fine. Getting into and out of cars BAD. Waiting room chairs BAD. Leaving the house BAD. Pain meds good.

They gave me Ambien because I couldn’t sleep, but it didn’t really help. Pain was the central focus of every moment of my day. How bad would it hurt to pee? How bad would it hurt to get up from the couch then walk the 20’ to pee? How bad would it hurt to pat myself dry? Oh god, what if I move my bowels? AAAAAAAACCCCCCHHHHHHH! FYI, stool and urine are highly acidic. When those highly acidic body fluids touch raw skin, you are surprised to hear yourself cry out, and surprised by how much you don’t care when it happens in a public place. How bad will it hurt to get in the car? Any worse than it will hurt to get out of the car? No. I stopped leaving the house except for radiation. I walked hunched over like a 90 year old geisha taking the worlds tiniest steps and trying not to bump into my enormously swollen lady bits. These were not the best days. But then I embraced my meds. With big, loving, open arms I embraced my meds, and while I’m not entirely sure how much they helped, I am entirely sure that they numbed my body to a tolerable level. And for that I am forever grateful.

Hydrocodone helps. 2 really help, but then you go through them faster. The ideal cocktail for sleep is 2 Ambien and 2 hydrocodone. Do not do this. Ever. I was desperate and just before nodding off realized it might have been a very bad idea. I didn’t care. Thankfully I woke up 5 hours later with the most rest I’d had in over a week. Sleep is good. And this is how it goes. You medicate, you readjust, and you wait until it gets better. Always believe that it will get better because somedays that thought is all you have.

One day it hurt less instead of more, and that was huge. A few days later it hurt less instead of hurting the same, and that was even grander. A couple of weeks after finishing treatment the skin healed and it was better. Within a month the pain was gone. 6 weeks after completing my first round of treatment I felt amazing, at which point I started seeing my doctors again in preparation for surgery. FML.

Today was not a good day. Barbara and Tobin (not pictured) were here to hold my hands and get me through. I am eternally grateful.

July 27, 2015

I’ve avoided use of the word “fair.” What’s fair and what’s not fair don’t seem to apply to life. I don’t believe that this is karmic retribution, the result of too many glasses of wine, or that cancer happens to other people. But today I want to stomp my feet, pound on the floor and scream at the universe that this isn’t fair. My undercarriage itches. The whole thing itches and I haven’t slept in days. There’s the burning pain from the radiation, the nausea from the chemo and the constant low grade headache. It burns when I pee, it burns when I poop. There are only 3 days left of the chemo/radiation regimen and I’m tired. So fucking tired.

Phase II planning appointments today: radiation, labs, Dr. Skibber (surgeon) to set surgery dates and discuss details, genetic counseling, wound ostomy clinic. And I can barely keep my eyes open. Praise the gods for friends. Barbara made me breakfast, Tobin gave me watermelon and they hustled my weary body out the door. I don’t know how to describe listening to the details of a surgery that no one knows the actual results of when they slice me open from my pubic bone to just above my belly button. One option leaves me with staples up my belly and a temporary ileostomy that will be reversed in 4-6 months while my rectum rest and my body is once again loaded up with chemo. The second option results in a permanent colostomy with the same abdominal incision and a permanent closing of my anus with staples closing the area like an episiotomy. AND, remember that stuff about the tumor abutting my vagina, there might also be some reconstruction there if the tumor hasn’t resected. Did I happen to mention it will be a 6 hour surgery? That I won’t be released to work for 6-8 weeks and that no matter what I’ll have some permanent or temporary bag hanging off my body collecting stuff? Or that even if the result is a temporary ileostomy my bowel function will forever be affected? So I’ll only say it once and that will be today and I’ll say it through a childs river of angry tears . IT’S NOT FUCKING FAIR.

The Trinity. My radiation machine run by the worlds most amazing radiation techs. Forever grateful for their kindness.

June 23, 2015

Preparing for chemo and radiation is weird. Having cancer is weird. Telling people you have cancer is weird. But is it so much stranger than the first day of kindergarten or true first anything? No. I don’t imagine it is, but I don’t remember those things, and with cancer everyone around you is frequently breaking into tears or smiling so hard you think they’ll hurt themselves. Probably much like that first day of kindergarten.

I tried to tie up loose ends. Working as a contractor made putting my job on hold relatively simple, my roommate made leaving home for 6 weeks relatively simple, and my parents and friends made everything else relatively simple. We rented an apartment, set up a care calendar of friends and family rotating in and out to keep me entertained, fed and safe, and I dove into treatment. I’ve never been more present than those weeks of preparing for and beginning treatment. Before this so many hours of the day were spent planning the next vacation or night out with friends, which was pretty much every night, but the more I learned about my rectal cancer the less I looked ahead or behind. Tomorrow is still a mystery and yesterday is so far gone it’s prehistoric.

I began my chemo and radiation on June 23, 2015 with very little idea of what to expect. Per my doctors, radiation would be fine in the beginning, then give me the equivalent of a massively destructive sunburn to my “undercarriage.” I would eventually feel fatigued and experience drainage, and most probably be thrown into early menopause. In the long term my bone density would be affected with a high probability of spontaneous pelvic/hip fractures by the time I’m 70 and my reproductive organs damaged. So far I haven’t had a period since June 23, 2015…the day I began treatment. Everyday I had radiation I also took 3000mg of Xeloda, 1500mg in the morning and 1500mg in the evening. My medical oncologist didn’t expect hair loss or massive weight loss, and told me to expect a relatively good response to treatment due to my age and general fitness level. Some of the traditional side effects still applied: nausea, fatigue, hand/foot syndrome, mouth sores. Happily I avoided the hand/foot syndrome and mouth sores. Always be grateful for the side effects you don’t experience.

Walking through a cancer center is a lesson in perspective. No matter how bad you think you have it, you don’t have it THAT bad. Or at least I didn’t. My cancer won’t kill me. The biggest risk is infection or surgical complications, and, spoiler alert, I might not have to have surgery (fingers crossed). More than one of my friends who came to visit commented on the fact that the patients at MD Anderson all looked shell-shocked. We are shell-shocked. We are being destroyed to survive, and for many, many people survival isn’t expected. What I saw and still feel overwhelmingly, is that under those circumstances human kindness overflows. Children with shaved heads and IV’s in their arms run through the halls laughing, adults in wheelchairs grimace from pain but smile as you walk past, and people are gentle with each other. I’ve never experienced such compassion, and I’m quite sure I’ve never been so emotionally raw and quite so tough. Yet.

My first 4 weeks of treatment were excellent, and I think it was because of the following:

—Water: I drank lots and lots of water. Tons of water. Oodles and gobs of water. Staying hydrated not only assist with headaches and nausea, but it made blood draws way easier. First stick every time. Since you wind up looking like a junkie eventually, having fewer needle marks is an aesthetic plus.

—Protein: The word “protein” comes from the Greek root “of first importance.” Of course you’re not hungry. You’re traumatized and probably feel kind of crummy. However, protein is necessary for cellular regeneration and maintaining red and white blood cell counts. My nutritionist and radiation oncologist loved me for maintaining good albumin levels and weight within 2lbs of my starting point during treatment. Radiation is math and if you lose too much weight the math of your body changes. I also had the great fortune of having lots of people around me shoving protein “treats” in my face every time I turned around. Sometimes it made me cranky, but it definitely helped.

—Exercise: I walked most days and continued with my Pilates practice at least twice weekly all the way through treatment. Since exercise is a regular part of my life, this kept me feeling at least somewhat healthy in the midst of other parts of my new daily routine indicating otherwise. Exercise releases endorphins, helps clear the brain, and I have a particular theory that it helps more evenly distribute the chemo throughout your system and keeps it from pooling in muscle. I walked up until my vagina was so swollen that I had the gait of a cowboy and the pain was so bad that I hobbled like a 90 y/o woman, but I kept up restorative Pilates the entire time.

—Friends and Family: I love them. I love those irreverent, beautiful, kind, glowing, bossy, hysterical people more than I could possibly express in this lifetime, and I keep them close. The revolving door on my apartment kept them coming and going in a very tightly knit schedule of visitors. And we had fun. Mostly. Museums, movies, shopping, restaurants, cooking, television, Thai massage. They also went to radiation and doctors appointments with me. When things got bad we sat on the couch and watched hours of Penny Dreadful and they made sure I ate and drank. They were advocates when I saw doctors and sentinels at the height of my pain. I will say again and again, that fear cannot thrive where so much love grows.

Apparently our team uniform is blue gingham. Always happy to match with my daddy!

Jeanne, me, Allison, Courtney. Occasionally cancer rocks because some of my best friends are all in the same place at once…with me!

My niece Lilly. Thinks cancer is boring, but loves me. She also loved that my apartment complex for the summer had 4 different swimming pools. Enthusiastic visitor for sure!

Amanda and I. Darling friend and Pilates guru. These was when things started to get bad and she still made me laugh. Thank god.

Six weeks passed. Time does that, continues moving forward when you think it should be standing still. The last 2 weeks the pain, nausea and insomnia came. It was relentless and worsened everyday up until my last day of treatment, when all I wanted was to be put in a coma from the waist down (they can’t do that, btw). Thank you for hydrocodone, ambien, butt paste and cannabis. Thank you to my medical professionals who responded quickly and compassionately to my growing needs. And thank you for all f*#cked up comments made by friends…without laughter I might have become bitter, and there’s no time for that.

Early morning walks around Rice University are perfect before a long day of poking and prodding! Especially when they involve my sister, Monica.

My sister was the first one to mention bowel function and sphincter preservation. The only rational response was to suffer a complete meltdown. What did she mean bowel function and what in the fuck did any of this have to do with sphincter preservation? Obviously, the diagnosis of rectal cancer and its many implications hadn’t quite sunk in.. When I explained to her the tumor was low enough to palpate she immediately made the connection between the surgery to remove the tumor and amount of space needed above the anal sphincter to maintain proper functioning. I did not put these things together. In my head chemo and radiation would shrink the tumor and I wouldn’t need surgery because bad things almost happen to good people and then we magically avoid true discomfort. Ha. Hahahahahaha. Wrong.

That was when it became apparent that my only option was to find the best lower rectal cancer team in the U.S., the world if necessary. I was 43, single, and did NOT under any circumstances want a colostomy bag or messed up bowel function. As a matter of fact I’m relatively certain the term “slit my wrist” slipped once, twice or maybe five times. The long term quality of life outcomes of rectal cancer are kind of a bitch. Why did it have to come with a lengthy abdominal scar, a poop bag, and the potential for diminished bowel function? Wasn’t this a little extreme? But in most cases it does, and this is why colorectal cancer, barring metastasis, doesn’t really kill people anymore.

We scrambled to get the scans and medical records necessary for MD Anderson to review my case. Colonoscopy with endoscopic ultrasound, lab work, follow up with GI doctor, CT scan, PET scan, medical oncologist, MRI and EKG. Between doctors appointments, Pilates training and work, I was frenzied and out of body. I wasn’t doing anything necessarily well, but I kept doing everything I could. Time with friends and family was imperative, and to say they stepped up would be the biggest understatement of my life. Flowers, phone calls, visits, a lifetime supply of tea, love, love and more love. And they fought on my behalf to get my treatment started as quickly as possible under the best care imaginable.

During all this time I was waiting on my staging and treatment protocol. Waiting and waiting and waiting and thinking with each MD appointment or new scan they would stage my cancer and tell me how they would proceed. Hopefully tell me I would never need a colostomy or ileostomy. They didn’t. What we knew for sure was that I had a large lower rectal tumor covering approximately 50% the diameter of my rectum. My tumor had grown itself some lymph nodes, pushed through my rectal wall and was abutting my vagina. “I have a rectal tumor abutting my vagina.” Say that over and over in your head and tell me how sane you are in 20 minutes. In the first week it became apparent that this process wasn’t going anywhere nearly as fast as I needed, so I jumped to action and decided to begin the healing process myself. I named my tumor Keyser Soze (“and like that, poof. He’s gone”), surrounded it with chanting Tibetan monks, and put Jon Snow on the wall between the tumor and my vagina. My plan is still to astound everyone by making my tumor disappear as though it never existed at all.

Picture this: my tumor named Keyser Soze surrounded by chanting Tibetan monks and Jon Snow on the wall protecting my vagina. I believe I’ve got this.

Three weeks after my first colonoscopy I walked into MD Anderson still unstaged and received my medical record number (necessary for all things MDA and permanently etched in my memory) and met Dr. John Skibber, lower rectal surgeon extraordinaire, the following Monday Dr. Cullen Taniguchi, my phenomenally talented and compassionate radiation oncologist, and that Friday Dr. Christopher Garrett, medical oncologist and my chemo guy…crushable in an odd way. And I met the staff of MDA. From the individuals that valet’d my car to the PA’s and nurses who represent the doctors mentioned above, I was treated with nothing but the utmost respect and courtesy. Maybe they spike the water in the employee work stations or maybe they have the worlds most effective sensitivity training, but whatever they’re doing, I am grateful because having cancer blows and they seem to get that.

Stage III rectal cancer with no signs of metastasis. Recommendation 28 treatments of oral chemo and radiation. Follow up 6-8 weeks post chemoradiation with surgery. Follow up with 4-6 months of chemo to make sure that no microscopic cells have migrated to my liver or lungs. They can’t tell you pre-surgery if post-surgery you will wake with a permanent colostomy or temporary ileostomy. They said they had every expectation I would handle treatment well, I would have pain, and that I could receive chemoradiation in Austin or Houston. We stayed in Houston. These were dedicated ass people, and in the end, it matters.