For Those of You Who May Be Reluctant Participants…

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Exercise. All of these things are exercise. I want to say something more intelligent, but I can’t, because I keep looking at Tom Hardy walking this dog. Oh yes! Exercise, Tom Hardy is exercising. Oh mah god, this man is gorgeous. And exercising. See? Exercise is fun! Tom Hardy photo by the incomparable Greg Williams Photography

The best way to get started with a movement program is just to move, but if it were that easy, based on all the research showing how imperative it is to a healthy lifestyle, everyone would already be doing it. Current data suggests that 50-70% of cancer patients do not meet the weekly recommendations for moderate intensity aerobic exercise (like walking), and the numbers for resistance training recommendations are abysmal. Therefore, if we want to encourage cancer patients to incorporate exercise into their lives as an added measure to improve prognosis and outcomes, then it’s important to make movement part of treatment protocols, and to do that we’re going to need to change the dialogue. For many, many years, many years ago, conventional wisdom said, “rest.” The unfortunate souls with cancer needed to conserve their energy, and most physical activity was considered simply too rigorous. The treatments were more savage, survivorship less common, and survivors themselves generally less vibrant. Quality of life took a backseat to quantity. Fast forward to the 1990’s with Lance Armstrong winning the Tour de France 7 consecutive times after being diagnosed and treated for metastatic testicular cancer in 1998. The treatments, while still brutal, were improving, patients were not only considered less fragile, but finishing a mini-triathlon became almost requisite in the first year after treatment, and survivorship was en vogue. The conversation turned to the extraordinary physical feats that someone could accomplish “in spite” of having a cancer diagnosis. This was excellent. It motivated people who might have been a little reluctant to get up and move to do so with enthusiasm and purpose. Today, I think it’s once again time to advance the conversation: we don’t exercise in spite of cancer, we exercise because of cancer. Instead of thinking of physical activity as simply being good for you, consider it as part of a treatment protocol initiated to increase your chances of survival and maximize outcomes. Remember, it’s science, and even the American Cancer Society and National Comprehensive Cancer Network recommend exercise as essential for people with cancer. I dream of a day when your oncologist says, “We’ll be prescribing 20 rounds of i.v. chemo, and 24 rounds of [insert movement option of choice].” Can you imagine?!? I can, and I get giddy at the thought.

It seems that the place to begin this conversation is with the word “exercise” itself. For some, the word is associated with an addictive endorphin release, for others, and that is who this post is for, not so much. I have a very dear friend who cringes every time I say the word, and respectfully begged me to use words like “movement” and “physical activity.” Because there are definitely many who share her sentiment, please note that exercise is movement, movement is exercise, and they both equate to physical activity. I read a study a number of years ago that was performed on the housekeeping staff in a hotel. During interviews, most of the housekeepers stated they did not believe they met the criteria for an active lifestyle, despite the nature of their job. Researchers took half of the participants and broke down how many calories were burned during different job related tasks performed each day, and explained to them that they actually met the surgeon general’s definition of an active lifestyle. One month later, this group saw a drop in systolic blood pressure, weight, and waist-to-hip ratio. They had been exercising all along and didn’t even know it! All it took for them to reap the rewards of their active lifestyle was the knowledge that they lived active lives. What’s the point of that story? You don’t have to slog away on a treadmill for an hour or sweat through a crossfit class to gain the benefits of physical activity. You do, however, need to move.

So, in the beginning you are told you have cancer, and it sucks. You are going  to be very, very, very busy with scans, doctors appointments, and blood draws. Once they know, they have a lot more to find out. Between medical visits and Google searches, you’ll feel as though you don’t have a moment to spare. If exercise is already part of your routine, keep at it, or get back to it. Now is not the moment to decide you don’t have time. If you haven’t been physically active, talk to your doctor about moving your body early on. Think about it this way: it will improve your treatment, and it is almost completely under your control. Take charge! Cancer treatments are brutal, so you want your muscle strength, cardiovascular endurance, and tolerance for physical stress to be good going in, and there is quite a bit of evidence to suggest that patients who move more have fewer complications and side effects in both the short and long term. The difficulty with trying to begin a movement program after treatments have started is that at some point you feel lousy, and then it becomes almost impossible to even motivate yourself to get from the couch to the kitchen. Physical activity is simply a habit like everything else we do, so start in the weeks after diagnosis and before beginning treatment, and by the time you start feeling the affects of whatever it is they do, you will already be enjoying the benefits of increased activity.

Some notes on getting started:

  • Discuss movement with your doctor! They will ask on forms if you are physically active, they might suggest that you walk, but this isn’t their primary concern. Make it part of your treatment plan, if appropriate, and make that an ongoing conversation you have with your oncologist. No matter what, make sure you are safe and cleared before beginning
  • Exercise recommendations are the same for cancer patients as they are for the general population: 30 minutes 5 times a week, and strength training 2 days a week
  • Don’t be afraid to start slowly. If 30 minutes at once seems like too much, break it down into 10 minute intervals. Research demonstrates that aerobic activity throughout the day is calculated cumulatively!
  • If you are new to exercise, or have been out of the loop for a bit, look for an oncology based physical therapist in your area, or even an exercise physiologists with an oncology background. As well, many personal trainers are certified in working with cancer patients, and your oncology provider should have some recommendations
  • Do it with a friend. Few things are more enjoyable than a nice walk and talk, and it’s harder to back out if you’ve made a plan. Also, this is a great way for your loved ones to feel like they are getting to be helpful. Many cities also have group programs for cancer patients, so look for one in your area
  • Find something you enjoy! I love bollywood dance, and wouldn’t you know that there are actually bollywood dance workout videos that I can access through YouTube. What I lack in skill, I make up for in style. One of my moms good friends used to put on her favorite music, and dance around the house as she dusted her furniture and vacuumed the floors. Walk out to your mailbox, clean out your closet, two-step with a partner, take your dog around the block, or get out in your garden, because gardening is excellent movement! It doesn’t have to be hard to be good, but if you could breathe a little heavily, that might be nice…

After getting the okay from your oncologist, the only way to proceed is to simply do something. Be unconventional in your approach, try everything, and learn what feels good. The only magic pill, potion, or spell that will make you want to move more is actually moving more.

One life on this earth is all that we get, whether it is enough or not enough, and the obvious conclusion would seem to be that at the very least we are fools if we do not live it as fully and bravely and beautifully as we can

Frederick Buechner

A Case for Exercise Throughout Cancer

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November 2015. In the studio 1 day after chemo, and looking a little nauseated. In fact, I’m quite sure I was nauseated, but moving around always lessened it a bit.

It will come as a shock to no one that I’m a huge believer that movement heals, and should be considered an integral part of almost all cancer treatment programs with rare exception. The human body is a dynamic machine whose mechanisms thrive on the power derived from the processes initiated by physical activity. Last year, the following headline validated much of what I have preached throughout my cancer experience: Exercise is the Best Cure for Fatigue Caused by Cancer. I believe my exact response was an eloquent “duh,” and from there I dove down the rabbit hole of investigating the importance of exercise before, during, and after cancer treatment. What a thrill it was to find myriad scientific articles and studies proclaiming that not only was exercise a good thing for cancer patients, but that oncology rehabilitation “must” be a component of survivorship programs.

I learned that in places like New Zealand and Australia, depending on the chemo drug administered, they will escort patients directly from the infusion clinic to physical therapy because there is evidence to show that exercise may increase blood flow to tumors at the time when the drugs are most readily available in your body. That there is irrefutable evidence that exercising during treatment reduces the severity of side effects with certain types of cancer, increases the likelihood that the full treatment regimen will be completed, and increases life expectancy by up to 28-44% after particular cancer diagnoses. On multiple occasions, I have been nonchalantly informed that because of the 29 rounds of radiation to my pelvis during the summer of 2015 and subsequent chemotherapy, I have an almost 100% chance of suffering a spontaneous hip fracture by the time I’m 75. This sounds horrifically painful. Apparently, chemotherapy may cause a woman to lose as much bone density in one year as she would in a decade. What is the best way to maintain or improve bone density? Weight bearing exercises. Many patients suffer from peripheral neuropathy, an uncomfortable and potentially dangerous side effect of chemotherapy, in their hands and feet. The condition may cause tingling or burning in the extremities, making sleep elusive, and/or loss of sensation leading to falls and fall-related injuries. One of the best ways to treat peripheral neuropathy, especially early on, are exercises that increase blood flow to the peripheral nerves to improve sensation, and activities that improve strength and mobility to decrease fall risk. Infinitely more simple than the drugs often prescribed with side effects like drowsiness and dizziness. Cancer patients don’t really need anymore of that.

To boot, exercise may also lessen nausea (woohoo!), decrease feelings of anxiety and depression, improve your ability to maintain a social life, decrease fatigue, and improve your ability to take care of your own needs. While it is always lovely and heart warming to have friends and family care for us, it’s important to your spirit and sanity to maintain a sense of independence, even if it’s just doing your own laundry and grocery shopping. Exercise is proactive, and inspires a sense of self care and personal empowerment that helped me to feel in control in a situation that often makes you feel vulnerable and helpless. And please keep in mind, that while I have written the word “exercise” roughly 1,001 times in this post, that could mean a languid walk around the block, or perhaps even the infusion clinic. It’s all relative, but as you can see, the clinical evidence for oncology rehab is screaming at us, and it’s screaming at us to move.

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January 7, 2016. I was wearing my chemo pump this day. I can see that blurry, dulled look in my eyes, but it was a beautiful winter afternoon, and those should always be given the appreciation they deserve.

To most people all this jumping up and down (haha) about movement seems like a no-brainer. Of course it makes sense, but for many, many years of cancer treatment, patients were told not to tax themselves, and everyone knows the treatments make you profoundly exhausted. Exercise becomes counterintuitive, but the less you move the less you want to move. I really, really love Sir Isaac Newton’s first law of motion:

Every object will remain at rest or in uniform motion in a straight line unless compelled to change its state by the action of an external force.

Or, bodies at rest stay at rest, bodies in motion stay in motion. If you’ve been at rest too long, you must exert a little external force to get moving again. It’s science. As well, in the midst of the insanity following a cancer diagnosis, exercise often takes a back seat to all of your appointments, treatments, and general life management. Hear me when I say that in many cases exercise is NOT a luxury, it’s treatment. Refer to clinical evidence above.

It is important to consult with your doctor before beginning any exercise program, and this is even more true for cancer patients. Certain types of bone cancers increase risk of fractures, some chemo’s are known to lower blood pressure for a few days following infusion, some people develop peripheral neuropathy that may increase risk of falls or injury, and some people might have compromised immune systems that preclude time in the gym. For these and numerous other reasons, you want to speak with your doctor and make sure you’re safe, but once that’s done, there are many advantages to implementing a program, keeping in mind that for the cancer patient the intensity and/or types of activities may change daily based on their ever changing cancer body.

In the following weeks we will look at how to get started, different types of exercise that might benefit you or your friend with cancer, and some general guidelines on movement.

As always, thank you for reading!

Being the Mess

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A sample of the things that made having someone dig around in my lung not quite so bad.

“Sometimes, I’m the mess. Sometimes, I’m the broom. On the hardest days, I have to be both.”–Rudy Francisco

The cancer metastasized. One little nodule that popped up on the peripheral edge of the lower lobe of my left lung in October, and was growing by late April. The risk of metastasis was always there. The correlation between how low your rectal tumor is and spread to the lungs is significant, and the late stage diagnosis meant that quite probably more than one microscopic cell had caught a ride on the lymphatic highway leading to my liver and/or lungs. Despite knowing all this, it never crossed my mind that the adjuvant chemotherapy they did following surgery hadn’t annihilated each of those tiny invaders. It had most certainly come close to annihilating me. They aren’t really invaders, though, are they? Isn’t it just the same process that makes us grow in the womb? Cells dividing multiple times over, except for these are altered, and they are the enemy.

Initially, because of the positioning of the nodule above my diaphragm, my doctors didn’t know if the lesion was cancerous or not, but it was growing, they had confidence that they could locate and resect it, and eventually consensus was that it needed to come out. I imagined them apologizing profusely for cutting me open only to find a benign spot of pollen on my lung, and pushed the thoughts of malignancy so far down that for a couple of weeks I thought I might go crazy with the effort it took to conceal this possibility from myself. Always pragmatic to the outside observer, I told those who were bold enough to ask that I was prepared for it to be malignant, because that’s what strong, courageous people say, when in truth I was telling myself completely the opposite. You see, I’m actually a bit fragile, and I wasn’t mentally prepared for this, but losing one’s mind isn’t an option for the middle class.

Hearing the lesion was metastatic threw me into a dark tailspin, the greatest fear being that this is the beginning of them cutting pieces out of me bit by bit until there’s no more left, because doesn’t every tragic cancer story begin with mets to the lungs? And the greatest frustration being that this was one more setback to overcome. I was mad and sulky and apocalyptic about my life. This was supposed to be over. I had done my time and been paroled only to be thrown into the clink again. Except cancer is more like the super-max New Mexico state penitentiary in Santa Fe than anything that could ever be called the “clink.” It has a dark, heavy current of pain, grief, and fear that I had purposefully chosen not to explore my first time around. I was a goddess! I was going to rise above! Whether I was chronically nauseated, cut from pubic bone to sternum, or stumbling around because I couldn’t feel my feet, I grabbed onto any sliver of light I could find and created a blinding sun. It worked at the time, but apparently the universe felt that I hadn’t fully examined the shadows of my emotional depth, and decided to invoke it’s no stone left unturned clause. Tyrant.

Last week the word “submit” kept coming up: in an article written by a young woman who recently died of Ewing’s Sarcoma, by a dear friend at her book signing (“White Fur” by Jardine Libaire is this summer’s must read), by the Dalai Lama in an audiobook. I know how to take a hint. I’m practicing submission to this new rhythm of my life, anger and annoyance included. There will be scans every three months for a long time, if they cut me open I will heal, we will watch and wait, and in the meantime I will keep myself as healthy as possible because that is probably what has gotten me this far in the first place. Somedays I will be the mess, and I’m alright with that because I’ve been the broom for a long time. I continue to believe that this will potentially be the last cell to activate, but I won’t delude myself with the possibility that it won’t. Those tiny little microscopic cells are lying cozy and dormant in my spongy lung tissue, we are traveling companions, and I can accept this, but they don’t get to take over. I love what Elizabeth Gilbert once wrote about fear:

I recognize and respect that you are part of this family, and so I will never exclude you from our activities, but still—your suggestions will never be followed. You’re allowed to have a seat, and you’re allowed to have a voice, but you are not allowed to have a vote. You’re not allowed to touch the road maps; you’re not allowed to suggest detours; you’re not allowed to fiddle with the temperature. Dude, you’re not even allowed to touch the radio. But above all else, my dear old familiar friend, you are absolutely forbidden to drive.

Currently, I’m getting focused on exercise oncology. My brilliant lung capacity made this surgery possible, the fact that I rehabilitated myself past pre-cancer strength allows me to recover not only quickly, but well, and I’m reading some fascinating articles about how exercising during certain types of chemo is actually recommended to help the drugs do their job. I have developed a very specific skill set (when life gives you lemons) revolving around surgical recovery, exercising through fatigue, and how to do Pilates with a chemo pump. I’ll be writing more about all of these things, and probably more about how I’m learning to submit. Rome certainly wasn’t built in a day.

Xo, Shelby

TINA

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The Hyder House in San Miguel de Allende February 2013 for Fay’s birthday celebration.

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be?”
― Marianne Williamson, A Return to Love: Reflections on the Principles of “A Course in Miracles”

It is officially the first day of summer. The sun is shining brightly, the humid air is sticky with moisture, clothing is getting looser, bodies are moving more slowly under the oppression of summer’s heat, and I am fatigued by grief. A week and a half ago, without warning, someone I love shook off her earthly suit. The suddenness of this event rocked me on a cellular level, and fractured the last vestiges of the flimsy barriers I had constructed to push back pains I didn’t want to feel. For a moment I cracked and went completely dead inside, numb at the shock of this loss, stunned by its swift blow. Then my senses began to return, and the numbness was replaced by sorrow, and something magical happened, I began to wake up. For the first time in a long time, a little over an entire year, maybe even longer, I began to truly wake up.

My friend was HUGE. Her life force was magnificent and she was incredibly tall with a head full of massive curls that were constantly unrestrained. She had an insatiable curiosity for experiences and people and life. When she was with you she was present, often gesticulating wildly or leaning in more closely and pronouncing with greater articulation to make her point. She travelled and she explored, both the world and the inner workings of her spirit. She sought experiential knowledge, and found it over and over and over. In short, she lived. This is why, even in the earliest expressions of my despair, it never occurred to me that she hadn’t had enough time. hadn’t had enough time with her, but she had been making the most of her days, and that has had a more profound effect on me than the greatest self help manual yet to be written.

In the midst of our friendship I didn’t see the impact she was having on me. Maybe it was the slow burn of someone you see regularly, but probably more so than anything else the simple fact that I hadn’t actually ever thought about it. I only knew that she was my friend and she was wonderful…doesn’t that so very often seem like it’s enough? And it was. But in retrospect, over the course of  years and many hundreds of moments, I was listening and learning and getting to know her. Her life was making its mark on my soul, and luckily I was paying attention, because with the swift kick in the stomach of her death it all came flooding in.

TINA gave time and attention to the aspects of life that were important to her. She loved her art and textiles and creating, so she found a workshop (which she ended up ditching recently because it had a rodent problem, BUT she sought space for her creativity). She loved the Texas Playboys baseball club, so she became the supreme Nut (the name of their booster club), and attended almost every game, supported the team, and cheered them on with unmitigated enthusiasm. She loved her family, so she scheduled time with her sisters and nieces who lived out of state, flew to them on a seconds notice when needed, and prioritized them in her life. They knew without doubt they were loved. She sought knowledge of herself and believed strongly in our connection to the Absolute, and so she studied and wrote and read and devoted time to her personal development. She cherished her friends, old and new, and so she created time for us. She carved out hours, or sometimes minutes, to nurture the relationships that she held dear, and there were a lot of them. She LOVED to travel, and so she did. She made this happen even when finances and time were tight, and these experiences enriched her in countless ways.

My friend struggled against the same mortal coil that affects us all. She wasn’t magically immune or inoculated against the stresses of daily life, but she believed in abundance and had felt its presence in her life. In general, she truly believed that the universe was conspiring in her favor, and even in the moments when life wasn’t easy, as it so often isn’t, she believed. If something is important, you do it. If something vexes you, express it and move on. If you are called, answer. She showed up for her life, and she didn’t hesitate to say yes. So many of us are plagued by second guessing. Is this the right thing to do? Does it make sense? Can I make this work instead of will I make this work? So many questions when what we usually need is to simply say “yes,” and then show up for what we said yes to. She was expert at this.

I take away from her life that being present brings a treasure trove of riches, developing new and real friendships is never a bad idea, and that jumping in with both feet is only scary for approximately the first 5 seconds. I got cancer and lived. TINA got poison ivy and died. This is a supremely fucked up truth. The most beautiful part of her death is that she did not leave behind a lifetime of regret. If she was conscious in her final moments and knew what was happening, I sincerely doubt that she thought about the trip she should have taken, the adventures she should have said yes to, the friends she could have met, or the conversations she might have had. If she had a thought, I imagine it was more along the lines of what a glorious ride life had been.

I am fatigued by grief. I have struggled against low grade sadness for too long. Her death shook the foundation of that sadness and woke me up to potential. I am horrified by the idea of dragging out the sorrow of the last year for another second. It’s passed. It’s past. Today I am alive, and there are things I want to do. My friend had many lives in her 53 years on this planet. She started fresh multiple times, and was dedicated to action. First things first, live. Be in the world. Learn. Dive in and see what happens. Don’t be afraid of what will happen, be terrified of what won’t happen. “Who am I [not] to be brilliant, gorgeous, talented, fabulous?” The best way I have to celebrate her life is not to have regrets about mine, the risks I was afraid to take, the challenges I didn’t accept, the brilliance I turned my back on. She was part of my life and that meant something. Her life and beauty and presence affected me. It mattered and it was real.

I love you, TINA Pumilia. I am grateful every moment for the years I spent knowing you and for the knowledge of you that gets to be mine forever. I am better for your presence in my life, and I will live in such a way that the cosmos will shake with your laughter and delight. Cheers to your glorious, raucous, vibrant life! Cheers to you!

“No one ever said that you would live to see the repercussions of everything you do, or that you have guarantees, or that you are not obliged to wander in the dark, or that everything will be proved to you and neatly verified like something in science. Nothing is: at least nothing that is worthwhile. I didn’t bring you up only to move across sure ground. I didn’t teach you to think that everything must be within our control or understanding. Did I? For, if I did, I was wrong. If you won’t take a chance, then the powers you refuse because you cannot explain them, will, as they say, make a monkey out of you.”
― Mark Helprin, Winter’s Tale

 

 

 

 

 

There Are Shadows

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Lifecycle of a Butterfly

Note to self, there will be shadows. The physical wounds are healed, CT scans reveal no signs of metastasis, and the chemo drugs are long out of my system. By all accounts, I’m well, and not only well, but surprisingly vigorous apparently, because according to most I’m vibrating health. 8 hours of sleep each night, loads of water, and a diet rich in fresh fruits and vegetables tends to have this affect. But there are shadows, an underlying current of heaviness that I wasn’t quite expecting.

It’s impossible and unrealistic to believe you will go through something like this and not be changed. As much as I thought I lost my innocence many, many moons ago, I was wrong. I had a million experiences, placed myself in ridiculous situations, and always played on the edge, pulling back just in time to never face real consequences. Almost every pain I had ever known I inflicted on myself. Who knows, I might have even inflicted this cancer on myself, as rectal cancer is linked to heavy alcohol consumption, a diet high in animal proteins (my past love of bbq and foie gras is no secret), and a diet high in fat, but there’s no way to know that, so I choose not to assign blame. What I do know is that the lightness, perhaps we could call it whimsy, glee, merriment, that I once felt on a mostly daily basis is gone. I held on to mine longer than most, and for that I’m grateful, but I now truly know what the term lost innocence means, and I think I’m mourning.

Please don’t misunderstand me. I am delighted that the experience is past, I survived, and my outcomes have been so, so good. I am on my knees appreciative of this, but like a dear friend of mine often says, you can’t unknow what you know. There’s no going back to a time when my body appeared to have countless, mysterious fail-safe mechanisms, my brother-in-law thought my liver was sprinkled with fairy dust, and I bragged about my iron clad constitution. There is no going back to a time when being tired simply meant I might need rest. Although I know it’s irrational as I’m only 6 short weeks past my last surgery, which was piled on top of a year worth of physical assaults meant to preserve my life, but I still feel tired, so I scan my body for signs of cancer. Am I tired or am I fatigued? I got it so fucking wrong last time.

It’s time to return to work, but the idea of going back into physical therapy inspires dread. Please, goddess, please don’t make me be around sick people, right now. I don’t have it in me. The coffers are empty, and, for now, I have so little to offer. Therefore, I’m searching for something different, a way to wake up the light that feels dormant, not gone because I feel that, too, but needs to be aroused, stimulated, and nurtured much the same way I’m trying with full commitment to nudge my physical body back to health. I feel shadows, and at times I think they are so present that I can almost see them. They are not the heavy weight of depression, or the feeling of helplessness in a dark night. My shadows are sheer black, almost imperceptible, but ever present in the periphery. In the daily effort to make something new happen, hoist myself up and start fresh, believing that anything and everything is possible by simply acquiring momentum in a single or multiple directions, I am with my shadows. The shadows tell me that I can’t unknow what I know, there is no certainty in this life I used to live so flippantly, that I’m grieving the harshness of the last year. What I previously only knew in theory, and thought I was comfortable with, I now know in practice. Theory and practice are very different things.

My shadows are not comprised of fear, they are comprised of knowledge. I imagine that these shadows are the seeds of wisdom, and that one day they will fade and integrate, becoming part of me, inherent in my functioning. For now, though, I feel like I woke up one day and was middle aged, and can feel the years everywhere, not that my body feels old or even my mind, but that all of the knowledge I gained over time and with experience suddenly jelled into something tangible and real, and I feel the weight of it. I often find myself wanting to remind my friends that I used to be a helluva good time, a walking disaster, but a whole lot of fun. Probably because life doesn’t feel fun, right now, and to be absolutely truthful, that kind of sucks. I actually struggled with the thought of publishing this post, but then realized that without it I was painting an incomplete portrait of this experience. The physical and mental bodies are intimately, inseparably linked, and trauma to one causes trauma to the other. In being so forthcoming with the physical experience, it seems unfair to gloss over the emotional one. There are no hall passes here, no get out of jail free cards. My emotional body has been wounded, too.

But, you know what they say, life is short but it’s wide, and this too shall pass. A time will come when I can’t see the shadows anymore, and then they will slowly melt away into my consciousness, where we will only meet in dreams or memory. Life will take on it’s glow again, and my cracks won’t feel so wide, but until then I experience this healing for what it is: unsullied, pure, physical and emotional healing. The kind of stuff that makes you human.

I truly thought that I would come out of this final recovery period like a rocket, launching straight up with speed and power, but now I’m beginning to realize it’s more like the butterfly coming out of it’s chrysalis:

When the butterfly first emerges from the chrysalis, its wings are soft and crumpled. The tired butterfly rests, and then slowly unfolds its wings to dry. After a few hours, the butterfly will be ready to fly.  Lifecycle of a Butterfly

If you compare the life span of a butterfly (about 1 year) to that of a human (about 71 years), you get my drift. Right now, my wings are soft and crumpled and I need to rest, and over time I believe my shadows will evolve into something beautiful and kind and compassionate. I believe that my life will be more important to me because I came through a metamorphosis that left permanent scars on my body and psyche, and for now I just need to be at peace until I’m ready to fly.

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This should light my way for the time being. Who in the world doesn’t feel at least a little joy looking at this photo?

 

 

 

 

 

Mine! The Gut Microbiome

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Neil deGrasse Tyson is so cool.

“All disease begins in the gut”– Hippocrates

The gut microbiome is set to be all the rage in 2016. Large scale research studies are in effect, dietitians are pulling their focus to a diet that encourages a diverse intestinal environment, and scientists now actually consider gut microbiota an organ, an acquired one, but an organ nonetheless. As humans, we are covered and filled with tiny microbes on our skin, in our nose and mouth, and throughout our intestinal tract, living in a symbiotic and, mostly, harmonious relationship. These microbes outnumber our human DNA 10-fold, and the number of genes in all of those microbes’ genomes is roughly 100 times greater than the number in our human cell genome. Whoa. According to the group “Gut Microbiota for Health,”

“Our gut microbiota contains tens of trillions of microorganisms, including at least 1000 different species of known bacteria with more than 3 million genes (150 times more than human genes). Microbiota can, in total, weigh up to 2 kg. One third of our gut microbiota is common to most people, while two thirds are specific to each one of us. In other words, the microbiota in your intestine is like an individual identity card.”

What this means, in essence, is that while any two people in the world, no matter age, sex, location, will share %99.9 of the same DNA, only about %30 of their gut microbiota is the same. Two-thirds of your gut microbiota is as unique as a fingerprint! You can see why scientists are so excited about this.

I first learned about the gut microbiome in 2012. My brother-in-law has a rare disease called Primary Sclerosing Cholangitis (PSC), which causes inflammation and fibrosis of bile ducts inside and/or outside the liver. 75% of individuals with PSC also suffer from a form of irritable bowel disease, mostly ulcerative colitis. He was winding up in the hospital approximately every 6 months with complications from colitis, and Monica desperately wanted to take him off one of the medicines she thought was causing this. Having just returned home from a recent hospitalization, Moni was especially on top of her research game and called to tell me she had a plan: “It’s called fecal transplant. I’m going to give him my poop.” I pulled my car off the freeway and sat slack jawed while she explained the process, mostly responding with highly intelligent comments like, “oh my god,” “ewwwww,” and, “huh.” You know what, though? She nailed it. They went through this process before the FDA decided to take it over, and it worked. He’s had very few flare-ups of ulcerative colitis since then, and when he did a couple of years ago, she just gave him her excellent bacteria again. Now that the FDA has stepped in, fecal transplant with a known donor is regulated and difficult to access unless it’s treating c-dif, but that’s a story for another time.

A few short years ago, it was the commonly held belief that infants were born sterile, with no exposure to bacteria, fungi, or other microorganisms, but recent research has indicated that the amniotic fluid surrounding the fetus may have bacteria present that are important in establishing the early immune response. For sure, during vaginal birth, the infants microbiome is colonized by skin bacteria from the birth canal and from the colon of the mother, and from there it’s off to the races. Your gut microbiome is a direct indication of the environment you were raised in (country, city, suburbs), the food you ate (McDonald’s, home cooked, processed, organic), and whether vaginal birth vs. c-section/breast feeding vs. formula.

Why, you might be tempted to ask, does this matter to me? I became interested because they have linked response to chemotherapy to intestinal microbiota, and I have a minty fresh colon that I want to really treat right this time around. Here’s what they say about the chemo thing:

  • “Researchers have shown that the efficacy of one of the molecules most often used in chemotherapy relies to an extent on its capacity to mobilise certain bacteria from the intestinal microbiota toward the bloodstream and lymph nodes. Once inside the lymph nodes, these bacteria stimulate fresh immune defences which then enhance the body’s ability to fight the malignant tumour” Gut Microbiota for Health

This could be a game changer for people receiving chemo. My response to chemo was impressive, and I’m set on developing a super microbiome in the off chance I ever have to do it again. Now, why does the gut microbiome matter to you? Because, we are absolutely, positively products of our environment and diet, and guess what? You really are what you eat, and for that matter, what you eat off the floor. Oh no or yay, depending on who is reading this, but your diet and environment matter. Recent studies have linked certain bacteria and/or lack of diversity in the gut microbiome to obesity, diabetes, rheumatoid arthritis, multiple sclerosis, muscular dystrophy, fibromyalgia, other auto immune diseases, and some cancers. As well, variations in the gut microbiota are linked to anxiety, depression, bipolar disorder, and other stress related psychiatric disorders. Do you get where I’m going with this? 80% of your immune response is in your microbiome. Your helpful, lovely, dynamic gut microbiota help you to digest your food,  in the production of certain vitamins, to combat the aggression of other microorganisms, and to modulate inflammation related with numerous disease processes. As you can see, they are busy, and they are important. It is suggested that a future is imminent where “microbiota typing” will become a standard of medical care. Analysis of the urine and feces would reveal the unique make up of an individuals microbial community, which might indicate why an individual was sick and what may make them well. Researchers are seeking pathways to develop antibiotics that are targeted rather than global to decrease disruption of the gut microbiome, and someday we might be able to deliver drug therapy’s that are geared to your unique intestinal environment.

Research indicates that the human gut microbiome has been drastically altered by our addiction to processed foods, antibiotics, and an increased number of elective c-sections. City living doesn’t help much either. People born in rural areas, in the vicinity of livestock, appear to have a more diverse and healthy bacterial load. We are basically sanitizing ourselves into ill health. The good news is that our microbiome is affected with each meal, and that a recent Harvard study showed that the gut microbiome can be drastically altered in a few days with a significant alteration in diet. We actually have control over the bodies first line of immune defense through diet and a discretionary use of antibiotics. That is phenomenally exciting news! With the myriad life events I have minimal ability to impact, I love to embrace the things I can actually affect, and after my year of living cancerously, I am all about impacting my healthy positively on every level.

So now that you know that you are much more inorganic than organic material, what in the world do you do? Get down and dirty with your diet, darling. As per usual, it all comes down to what you stick in your mouth. Seriously, don’t forget that we have a skin microbiome, too. Haha. Sorry. Moving on:

  • Fermented foods: plain yogurt with active cultures, kimchi, sauerkraut
  • High fiber foods: especially the fructan and cellulose fibers. The rough fibers. The parts you don’t usually eat. Stalks of broccoli, the tough end of asparagus, leeks, the parts that get stuck in your teeth.
  • Foods that are low in sugar and unprocessed
  • Farm to table: get your food with bacteria on it! Buy your food as close to the source as you can. Austin is rich with urban farms and farmer’s markets serviced by numerous local vendors. Utilize these resources here or in your own community.

There you have it. My new obsession, and the good news is, you can get involved in all of this exciting research! From the creators of the Human Genome Project comes the Human Microbiome Project. You can add your unique gut bacterial composition to that of thousands of others in America and around the world and get results of your data sent back to you. Find all this info at The Human Food Project.

P.S. 1 year ago today I was diagnosed with cancer. Wow, just wow.

P.P.S. 3 years ago today my uncle George died from complications from multiple myeloma. I miss him.

 

Happy Endings

“Dearly beloved, we are gathered here today to get through this thing called life.” This post isn’t a tribute to Prince, but a tribute to the final step in the most challenging year of my existence, so far. Prince is also dancing around in my brain almost constantly after news of his death last week, therefore it would be impossible not to bring a little of him into this.

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One last ridiculous meal. Restaurant Helen in Houston. I can’t praise the food and entirely Greek wine list highly enough! See how happy Monica is when we’re going crazy with food and wine? My parents look similarly pleased on the opposite side of the table. Except my dad, it’s approaching 7pm and he wants to go to bed. (helengreekfoodandwine.com)

On April 14th I arrived at the hospital with my parents and sister in tow for my final operation. Having the ileostomy reversed is much less harrowing than the first surgery, and I’ve been poked and prodded so often this year that an IV or two and a few extra shots don’t actually stress me out anymore. This time they gave me the option of an epidural or an Exparel shot for the post-op pain, and because I think it’s always better not to have something injected into my spinal cord, I chose the Exparel. What’s Exparel? It’s a nerve block that they inject directly into the surgical site to numb the area for about 4 days. How do I remember the name so well? It was on a wrist band I wore in the hospital. Very rock ‘n roll. In theory this is an easy surgery, cut out the part of my small intestine that was my darling stoma, sew the two ends back together, and drop it back down through the astoundingly taut and toned layers of my abdominal musculature. My words, obviously. And it was easy. Everything went beautifully. Except the fact that for some reason the Exparel didn’t kick in until about 4 hours after I woke-up.

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Looks like Dr. Frankenstein took a hatchet to my stomach, however, I’m saying it was a Brazilian knife fight. That’s my story and I’m sticking to it. #knifefightinRio

I now know what it feels like to be in so much pain that it makes you want to vomit. Yay, more lessons from that barbarous teacher named cancer. The last thing they want you to do after abdominal surgery is puke, and I was nauseous and in pain, but when they would ask about my pain levels all I could say was “maybe a 6 or 7? “Why in the world am I such an idiot? I have no clue. All I can think is that in my incapacitated state I thought that if I didn’t say it, it wasn’t so. I do love some good delusion, but thankfully my sister, who knows me pretty well, pulled the recovery nurse out into the hall and told her that if I was saying 6 or 7, it was probably a proper 10. She also said I looked like I might die. I love her so much. From there they kicked into action. In under 1 hour I got 2 IV doses of phenergan, a dose of emend (both strong anti-nausea meds), 2 IV doses of dilaudid and a bump of morphine. I was flying for the next 24 hours, AND, because MD Anderson is the best place ever in the history of everdom, they continued to give me IV Dilaudid every 6 hours with hydrocodone and tramadol thrown into the mix in-between to keep me comfortable. Oh la la, I was very, very, very comfortable. I didn’t know my name, actually didn’t care, but I was very comfortable.

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Sweet Graham came to visit, and honestly, I know we had fun, but I only remember it because of this photo. Truth train. (And I don’t know how to scale photos on my blog, so our faces are HUGE!)

The goal following an ileostomy reversal is getting your bowels to move, or to pass gas, and they won’t discharge you until one or the other happens. I don’t think I was asked any less than 60 times in those first two days if I had experienced any activity. Everyone is super interested. Even my friends. They asked A LOT. So we walked and walked and walked. My mom and I actually got our 10,000 steps that second day! Which is amazing because I wasn’t moving quickly. Too loopy. I quickly went from a liquid diet (who knew that an Ensure slushy can be delicious) to soft solids, and the astounding feeling of absorbing nutrition after 8 months of absorbing almost none was beyond inspiring. The end result is that I felt much better than I ever anticipated. About a month after finishing chemo, I found myself incredibly perturbed that I still fatigued quickly or couldn’t keep a train of thought. I understand that chemo brain is real because I still have some memory loss, but I didn’t realize how much malnutrition was affecting my ability to think or concentrate. After two Ensure’s (which are gross and chemically…don’t drink them unless you must) that first day in the hospital, I started to perk up immediately. When I began to add other foods I thought I might dance out the front door. The end of the story is that on night two my bowels began to work and they discharged me the next morning. According to everyone, I’m really good at recovering from surgery. It’s a skill.

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Having friends send gorgeous orchids always helps with a speedy recovery. Thank you guys so, so, so much!

My mom and I drove home with floods bearing down on Houston, and started trying to figure out what I could eat. The first 5 days were lots and lots of white foods. They call this the low-residue diet and I stuck to it. White bread, eggs, bananas, rice, mashed potatoes, sweet potatoes, blah blah bland bland, but it works. Most people post-ileostomy have uncontrollable diarrhea and can’t be away from a bathroom. Their anal sphincter is unconditioned and weak. Not to toot my own horn or anything, but not me. Toot toot. My stools were firmed up the day after discharge, my bowels tended more toward constipation so I actually needed to add some foods with higher fiber to my diet instead of eliminate them, and because I have diligently been doing my anal kegels since last October, I can actually hold my bowels. Side note: this newfound ability to talk to openly about the state of my bowels is astounding, which is a good thing, because it comes up often. Anyhow, I’m able to drink coffee without upset, thank god, and I am now, 2 weeks post-op, walking for about an hour most days…away from the house! Ta. Dah. The goal is to slowly add foods to my diet, only one new, higher fiber food every couple of days, and find out what affects my stomach and what doesn’t. They say that your sensitivities  will be similar to the ones you had before. Luckily for me, I’ve never had a super sensitive stomach. Except for that time my sister drove me to madness in Barcelona and I bought coffee from a questionable vendor. Who deprives someone of coffee for the first 3 hours of their day? Is the Sagrada Familia really that great? Yes it is, but I still needed my coffee.

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Starting here. Cashew citrus milk. Sprouted nuts, good for the guts, and it’s got me back in the kitchen. Miracles do happen! Recipe by Sweet Laurel Bakery (sweetlaurel.com). She has multiple recipes for delicious nut milks on her blog.

The lesson this taught me that I knew before but had forgotten because bbq, tacos, sweetbreads, fried chicken, and old fashioned’s ARE a way of life, is how completely nutrition affects our physical well-being. The way the human brain and body respond to even the most minimal amount of nourishment is awe inspiring, and I am super curious to see what happens if I focus on super nutrition. To that effect, you will see me cooking more, hitting the farmers markets more, and repopulating my gut microbiome with healthy, happy, helpful bacteria. How many people actually have the opportunity to repopulate their gut microbiome? It’s a rare opportunity and I intend to take advantage. By the way, if you haven’t been turned on to the gut microbiome, yet, I suggest you do some research, or read my next post, because all I can think about these days is my gut! So far I find that with a little more fiber in my diet (important for the gut microbiome) I void more at once, which is important because I don’t have much of a rectum left. It’s all about getting my colon back into tip top shape and teaching it to act as a rectum, and I’m well on my way to doing it. I also have to believe that my Pilates practice has had something to do with my success. Maybe it’s the internal massaging the happens during many of the exercises, or keeping the abdomen toned. I don’t know, but according to my doctor I’m experiencing the best possible outcome we could have hoped for, and we’re both thrilled.

Now its time to move on and focus on beginning a new work life, moving forward, taking care of what I now know is an extraordinary machine (seriously, I should have bred when I had the chance because, in general, my genes are super stars), and keeping these lessons with me. What I’ve learned in the last year is that I have an extensive and dedicated support network, how to ask for help, and how to, at times, be weak in front of others. I have learned that even during crisis, I am really good at getting “through this thing called life.”