Being the Mess

FullSizeRender (5)

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

FullSizeRender-66

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

FullSizeRender-62

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.

FullSizeRender-63

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

526924_443429532443851_1713919131_n

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.

IMG_6847

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.

IMG_6875

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.

IMG_6878

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.

IMG_6885

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.

IMG_6943

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.”

 

The Road Back to Houston

FullSizeRender-60

Thank you, Mr. Churchill. I think this is very good advice. I like very good advice.

On Thursday April 7, exactly one week prior to my scheduled ileostomy reversal at MD Anderson and 4 days prior to my pre-op testing, I learned that my appeal had been approved by BCBSTX and I would be returning to Houston for my final surgery. The two ends of my gorgeous small intestine would be reconnected by Dr. John Skibber, and I would be free’d from the suspended animation of the last year.

In the weeks leading up to this, I felt as though I was living in the dystopian and surreal world of the film “Brazil,” where a totalitarian, bureaucratic government with it’s dysfunctional and farcical systems made and changed rules at their whim, always looking for another stamp to be stamped, “t” to be crossed, or “i” to be dotted. In short, there were times I thought I might be going crazy. Under the nurturing blanket of my new Diazepam prescription, and the advice of my once again brilliant sister, on April 5th I threw a hail Mary pass and called the Texas Department of Insurance to lodge a verbal complaint against BCBSTX with a human. Their response was swift and efficient. I was once again informed that part of the deal with BCBSTX dropping this last individual PPO included mid-treatment cancer patients maintaining continuation of care, and that I was never supposed to be forced to jump through these hoops. They told me that in the months preceding this they had received multiple complaints regarding network adequacy. Then the faceless angel on the other end of the line told me that one of their agents would be contacting BCBSTX that day on my behalf, that she understood the urgency of my situation, and that they would be going to work on my complaint immediately.

Early that afternoon a TDI representative called to get a few more pieces of information and informed me that she had spoken with BCBS. She seemed confident, so confident in fact that she told me that if I didn’t hear from BCBS about my appeal by the following afternoon to “call me”, that if I didn’t like what they had to tell me to “call me”, and that in general if I were displeased with my service by BCBS in anyway to “call me.” Later that afternoon I had an incredibly pleasant and reassuring call from a BCBS representative. By Thursday afternoon my appeal had been approved, and I was on schedule for my pre-op visits and surgery the following week. I can’t begin to express how incredibly impressed I was by the rapid response by the TDI. While the written complaint process may take up to 3 months to process, and they told me the written information is important to have on file, the efficiency and efficacy of this agency in righting this wrong was mind-blowing. I am grateful in an overwhelming way.

BCBSTX spent months hoping that I would get tired and resign myself to an in-network surgeon. Suckers. I learned these very, very important lessons during this process that I urge you to pass on to anyone you know who is going through this process:

  • Appeal: 95% of first time denials are never appealed. They are banking on the fact that you will think it is entirely to much trouble to go through the appeals process. It is a hassle, but it’s worth it. If they deny that appeal you have the right to engage an Independent Review Organization (IRO) to look at your case. You can request a peer to peer review so that your physician may speak to another physician regarding medical necessity. You have and rights and you have options. Exercise them.
  • Watch out: I was amazed to find out how spot on my sister was when she told me to “trust no one” in their organization. She counseled me that they would look for any excuse to deny my appeal, and it was true. The day before they approved my appeal, a nurse case manager from BCBS called me to check in and make sure I had all my needs met. We discussed that their physician finder service was out-of-date and a surgeon who had been recommended was not on their list on in-network providers, but actually worked with Texas Oncology and took my insurance. 2 hours later I had a call from my representative in the appeals department stating that the nurse case manager had told her that I had found an adequate surgeon in Austin. Had I not complained about patient/caregiver privilege, deceptive business practices, and calling the states nursing association to file a formal complaint, I think this could have derailed my appeals process. Tricky, trifling, nurse case manager bitch. Trust no one. Unless they’re from the…
  • Texas Department of Insurance (TDI): If you really feel as though you have a valid complaint, and that your insurance company is wrong, call the TDI immediately (or your states governing agency for insurance) and file both written and verbal complaints. Go ahead and begin the appeal process, but find out what your rights are. When I think of how much time and energy I could have saved if I had called them after my initial denial…wait, I’m not thinking about that. Ever. I will always be amazed at how quickly they made things happen for me. Not only did they do their jobs ridiculously well, but they were kind, and at that point I desperately need that kindness.

So that was it. After all that time and effort, that was it. Monday April 11 I went to MDA for a barium enema and proctosigmoidoscopy. I won’t go into detail about either because they aren’t very pleasant, but both are performed to check for perforations in the colon and rectum. Dr. Skibber was once again incredibly pleased with my results, we discussed the coming surgery, and I went home for two quick days to prepare for one more left hook from my rectal cancer diagnosis. What a year. For the love of all that’s holy, what a year.

 

 

 

Health (We Don’t) Care

FullSizeRender-59

Mascara tears and ugly crying.

Insurance companies. Fucking insurance companies. My mother asked me not to curse as I wrote this, but the fact of the matter is I feel like cursing when I refer to my fucking insurance company. After my final disconnect in February, I thought I would have the luxury of convalescing in peace, regaining my strength, and finding peace of mind in preparation for my final surgery. However, once again I find myself dealing with a financial institution representing itself as an insurance provider. I cried my last 500 mascara tears over their deceptive and incompetent services last week, and now I have some things to say about the way insurance companies are conducting business, and I think we all need to be screaming mad.

When Blue Cross Blue Shield of Texas (BCBSTX) dropped my excellent individual PPO at the end of last year, I had many questions as they tried to sign me up for their “best” individual HMO plan, the most important regarding my continuation of care at MD Anderson since not a single retail marketplace HMO in Texas would now be contracting with them. At the time, I was assured that I would qualify for exemptions to have my ileostomy reversal and other necessary procedures performed at MDA, so reluctantly I signed up. I wrote previously about the debacle that ensued at the beginning of January when the new PCP they assigned me had actually switched to dermatology, my chemo was delayed for a few days, and I had to scramble, kick, and scream not to have further delays in my treatment. At the time I had a sense of impending doom regarding my future treatment by BCBSTX, but I HOPED that what I had been told in November was accurate and I would have access to my surgical oncologist. I, apparently, am a fool.

Two weeks before finishing my chemo, I was contacted by Dr. Skibber’s nurse at MDA with the dates for my ileostomy reversal. I promptly made an appointment with my PCP so that she could send the referral to BCBSTX. The referral was promptly denied because some smug general surgeon in Austin, who is in-network, agreed to take down my ileostomy. BCBSTX seemed to think this was a fine solution, and I think this is a fine time to dive into continuation of care and “network adequacy.” My surgeon at MD Anderson is one of the finest low rectal surgeons in the country, and it is all he does all day long. The primary reason I inconvenienced myself, my friends, and my family by pursuing treatment at MDA was that Austin, TX doesn’t have a single physician who is dedicated to low rectal or colorectal oncology, and most certainly not a specialized low rectal surgeon. Because my tumor was very low lying, the risks of my having a permanent colostomy were high, and to avoid this I sought the specialists, who just happened to be a short 2 1/2 hour drive to the east. Under their superlative care, not only did I experience an awe inspiring shrinking of my tumor after the summers chemoradiation, but I came out of surgery with a temporary ileostomy and superfine abdominal scar that doesn’t resemble a hatchet job. It would make sense, to anyone who indulges in logical thinking, that the specialist who performed the initial surgery would be the one to reverse it, that the man who cut me open so expertly the first time would do it the last time. Who in the world would consider it adequate care for a general surgeon who has NEVER met me or seen my internal organs to perform the take down of my ileostomy? We are talking about a lifetime of bowel function, and I’ll be damned if I’m going to let some yahoo screw it up when I can easily continue my care with Dr. Skibber, low rectal surgeon extraordinaire.

When I called asking if MDA could submit the appeal, a member services representative firmly told me that my PCP had to submit the appeal, which I would receive in the mail within 10 business days. I was expressly told that I should fax my PCP the appeal immediately upon receipt so that they could pursue the referral. I did this, with a letter from Dr. Skibber encouraging continuation of care and stressing the complicated nature of the original surgery. A couple of days later I contacted my PCP’s office to make sure they had received all of these documents via fax, and was told by her referral coordinator that I, the patient, had to submit the appeal. I once again contacted BCBSTX member services and was informed that my PCP had to submit the appeal; 45 minutes and two transfers later, I spoke with someone who, in an “aha” moment, revealed that yes, it was my responsibility to submit the appeal. And I did. With my letter from Dr. Skibber, multiple medical records, and a concise, yet comprehensive, explanation of why continuation of care was medically necessary for the best outcome. A couple of days later as my chemo port removal was delayed by a week because the surgeon who originally placed it was now out-of-network, which was missed until a day prior to the removal, I learned some fascinating and painful new information. The referral coordinator from my PCP’s office informed me that she had been told by a medical director at BCBSTX that patients mid-chemo treatment and 3rd trimester pregnancy were NOT supposed to have their care interrupted. Like the gentleman told me as I was signing up for my sucky HMO, I should qualify for exemptions to continue at MDA. The following day I spent 3 hours on the phone with member services representatives at BCBS, working my way up the chain to a supervisor who eventually let me know that while this was historically true, on January 15, 2016, BCBS had issued a memo stating that no more continuation of care exemptions would be honored. For the first time in his experience, cancer patients and pregnant ladies were getting the shaft, and they had done nothing to inform me, as the consumer, that this was happening.

I wish I could describe what it feels like to get this far, and have to push more, fight more, and beg more. Why am I having to beg to have my surgeon continue with my care? Why does it matter that some general surgeon said he would do the surgery? Does that make him infinitely qualified? And all I can think about as I’m going through this daily round of phone calls, emails, and general ridiculousness, is that I have a Master’s, I’ve worked in healthcare, and I have a lot of assistance from my brilliant sister in navigating the system. How are people who don’t have these advantages supposed to fight for themselves? I want you to imagine your grandparents, your elderly parents, your lay person trying to work this all out. Think about someone with a full-time job and a family at home, even if they have the knowledge, where do they find the time? I think about it all day long. I try to figure out who else to call, who to ask for help, and what higher powers I need to appeal to. And guess what? Do you know what the most frustrating part is? The people who work at BCBSTX barely know what’s going on. Everyone has a different answer or no answer. The medical director who denied my initial referral was a pediatrician…not even an oncologist, let alone a surgeon, and they are considered qualified to make a decision that affects my life so completely? Uggghhhh!!!!!!! I understand why people just give in and let the system take over, why they go to generalists, and why they stop fighting altogether. I’m absolutely exhausted and want to give up everyday, but I can’t. It’s not in my DNA to let these bastards short change me on this one.

BCBSTX has my appeal, I have filed procedural complaints with their offices and with the Texas Department of Insurance, and if worst comes to worst, I will beg MDA to declare me medically indigent and treat this as charity care. BCBSTX is screwing me over because they have taken a scorched earth stance with MD Anderson. This isn’t about the patients for them, it’s about the fact that MDA wouldn’t come down to an unreasonable payment for their procedures so that the number one cancer treatment center in the United States can continue to offer amazing care and fund research that maybe, just maybe, will one day make someone else’s journey much easier and less painful than mine has been. It’s about shareholders, corporate bonuses, and money. Like I said before, fucking insurance companies.