Home Sweet Almost Home

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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.

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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?

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