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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.”

 

The Road Back to Houston

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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

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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.

Disconnected

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I absolutely felt like a queen! A turtle queen with dementia and a debilitating flu, but a queen nonetheless. Surrounded by many of my best friends, a whole lot of love, and handfuls of glitter. Sounds about right.

February 19, 2016, as far as I’m concerned you will always be one of my best days. You will be a lucky number, an auspicious date, and a moment that might forever bring a feeling of relief so immense that I seek you in times of stress. I’ve survived the most punishing treatments of my chemo, and I don’t know how to explain the solace in knowing it won’t get worse. Most of the side effects are easily chronicled, and at their peak have been seriously annoying albeit manageable, but my difficulty comes in describing the one side effect that can’t be managed, the intense feeling of fatigue that isn’t just fatigue. Perhaps its what getting slowly and methodically poisoned feels like, coupled with a grim sensation of defeat constantly lurking in the shadows. To know I’ve received that last dose, and slogged through… I feel free, for now. Spring is definitely coming early this year.

This final chemo beat down was bad, as the doctors said it would be, and exponentially more crippling than the ones prior. As much relief as I felt during the final disconnect, I also spent the following week feeling relentlessly clobbered, completely foggy, and 100% spent. This past weekend I had the great pleasure of catching up with a friend who was treated for ovarian cancer as a child, and she pointed out the most obvious fact: I’ve been in survival mode for months. Fight or flight. I haven’t been fighting for my life, I’ve been fighting for my spirit and success with these treatments, and now I’m exhausted. I was terrified of slowing down and not being able to start back up, so I ran, and once I rang that bell and walked out of the infusion room, I was able to stop. It’s like going on vacation and immediately getting ill, my body and spirit finally have the luxury of letting it all go, and come to find out, I’m fried.

I have the distinct impression that in the coming months I will actually start to process the last year, and for all the wisdom I’ve gained, the phenomenal blogger, Dread Pirate Khan, speaks for me when she writes, “fuck this mountain, I never wanted to climb it in the first place.” No one wants to climb this mountain, but the universe doesn’t care about what I, or anyone else for that matter, wants, this stuff just happens, and hopefully you land on your feet. Please read her profoundly insightful and spirited post on what it’s like to have cancer, because she pretty much nails it. http://dreadpiratekhan.tumblr.com/post/117758401541/whats-it-like-to-go-through-cancer-treatment. As much as I’m epically thrilled to have finished, and I am EPICALLY thrilled, I’m pulverized, and it’s going to take some time to come back.

However, in the meantime I want to thank these beautiful, loving, supportive faces for the best disconnect ever:

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The goodness started one week before my final disconnect when Jeanne asked what the best time to visit would be. I said “now” and she was on a plane Monday morning. I felt horrible on Wednesday following chemo and she bought me treats. Don’t judge, the chemo killed the preservatives. I love you, Jeanne Walsh! Like the photo of me to the right? My mom liked it so much she framed one for me, which I thought was strange, so I gave it to KK!

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I mean, seriously, who gets to have this much fun while feeling this bad? Thank you Tobin, KK, and Austin! Did I mention KK put me up on her couch for 3 days, and Austin fed me for two of them? Did I mention how much Tobin makes me laugh? May you all be blessed with the riches of a hundred kings!

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Look! She’s pulling my I.V.!!! And look at my gorgeous friends! And Fay’s ninja pants, and the flower heads, and sweet B, and Caleb’s sombrero!!! I don’t think I could love them more.

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These amazing nurses took such good care of me over the last 4 months. They are nurturing and gentle and funny!!! I was lucky to have them.

So, that’s over, and I am immensely grateful for all the love and support I’ve received, and now I can rest for awhile. As for the reckoning I sense on the horizon, I’ll let the ever quotable Tupac Shakur speak to that:

“You can spend minutes, hours, days, weeks, or even months over-analyzing a situation; trying to put the pieces together, justifying what could’ve, would’ve happened… or you  can just leave the pieces on the floor and move the fuck on.”

Boom. Well stated, Mr. Shakur. I’m not broken, I’m transformed, for better or worse only time will tell, and I plan on moving the fuck on.

 

 

 

Adapt

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This print says everything I’m feeling today, minus the fact that I have the overwhelming comfort of knowing this will pass. Continually moved by Melissa Carroll’s portraits. Prints are for sale on her website http://www.melissacarroll.com

I don’t feel well. I feel slow and off and nauseated and tired and flat and hazy. My brain is fuzzy and foggy and groggy and all those other -y words that say I can’t think today or yesterday or the day before, maybe tomorrow I’m no fortune teller, but definitely not right now. My feet feel funny because of the neuropathy, alternating between mild burning, frosty prickles, and slight numbness. I want to move, but I’m relatively sure that someone tied a medicine ball around my waist, so that when I finally begin to slog forward the pace is lethargic at best. There are other ailments I could complain about, but what’s the point?

Don’t worry about me, though, I’ve totally got this. The symptoms aren’t new, they’ve just become slightly more sustained. The upswing didn’t come before last weeks chemo, with it’s soul renewing rush of vitality and energy, and my doctors told me this would be the case. The effects of chemo are cumulative, and I only have one infusion left, so it’s time to be exactly where I am in this, and if that is the case this becomes a period of genuine introspection and experience, or more correctly stated, I will make this a time of introspection and experience. It’s better than lying around moaning for the next month. My prognosis is still fantastic, I’m still responding very well to treatments, and this haul is simply a progression in my experience with chemotherapy, but I was really hoping that I would coast through to the end. I know how it is, though, even if I don’t want it to be; right when I was getting comfortable, the learning keeps on.

So I adapt. If I’m becoming enlightened to nothing else during this, it’s that change is constant, unrelenting, and completely alright, as long as I can adapt. Otherwise, I’m just Sisyphus rolling a boulder uphill. How do I adapt? Frequently with a foot stomp, fist shake, confused look of acceptance, or complete brilliance. Depends on the day, but what is becoming more and more clear is I do best when I get out of my own way and let change come. It’s still a work in progress, but I’m liking the early results. Mostly, at present, what needs modification is my thought process and tendency to relentlessly push forward. I am embracing the virtues of convalescent leisure as a therapeutic technique to provide my body with a hospitable environment during this powerful stretch. I’m giving it all over to goodness.

By delving into leisure, I don’t mean simply lying on the couch watching multiple episodes of “House of Lies,” although I might, but also melting into the delicious feeling of doing what is best for myself in the moment and making that a priority. My number one, top priority, perform above all else, is movement. I’ve said over and over that it’s counterintuitive, and I’ll say over and over that it’s necessary. The sustained side effects began about two weeks ago, but I made myself walk, do some Pilates, and make a couple of plans with friends. The walking isn’t necessarily vigorous, and the Pilates I take at my own pace, but they both help me maintain endurance, strength, cardiopulmonary health, and dexterity, as well as releasing endorphins, lightening my mood, and bringing me joy. I can’t imagine how weak or de-conditioned I would feel if I had spent the last 2 weeks resting as much as I wanted, and I would have missed out on some spectacularly sunny, brilliant days. By maintaining momentum, the body maintains it’s desire to move. Simply and elegantly stated by Newton, bodies in motion tend to stay in motion, while a body at rest will stay at rest. When you don’t move, muscles become contracted, joints dry, nerves tense, and senses dulled, and did you ever realize that if you sit all day you start taking on the shape of a chair? Unacceptable! The movement doesn’t have to be focused exercise, but doing your dishes, laundry, bed making, water fetching, and laundry, as able, also keep the bodies systems active. Seriously, the continued activity makes everything easier right now, and if I continue to be active right now, I believe it will make everything easier in two weeks, and I will get through this on my feet. Staggering, but on my feet.

The flip side of motion is rest. While I am putting my body in motion and doing some stretching because I’m sitting more, I’m also sitting down to read a book, watch a movie, stare into space, or whatever else doesn’t require too much energy. I actually wrote a letter the other day, on paper. If I can manage to get a stamp on it I’ll really be getting somewhere (aunt Betty, this one’s for you). Giving myself space to rest is a new concept. Leisure time is one of life’s most fruitful and productive activities, and is positively rich in rewards when spent with friends and family, however, how often do we enjoy leisure by ourselves? It seems entirely too decadent, even to me, and releasing into the flow of this idea has been a challenge. A good challenge. A thoughtful challenge, and if I’ve ever had time to be thoughtful, it’s now. So, yes, rest is essential, and allowing yourself, as permitted, because I know a lot of people who work while going through this, and you have all of my respect, the opportunity to take a slow pace let’s your body have time to process and heal. It all circles back around to learning to sit in the moment and take full and honest stock of your needs, and not just the needs that are convenient, but the needs that will serve you. It’s actually harder than it should be, but like my daddy always says, if it were easy, everyone would do it.

And here it is, all I’ve got at present is finding the balance between momentum and rest, and letting these two simple task guide my days and nights, because up until now I’ve been sprinting like a madwoman trying to make this right. It’s time to get gentle and wrap myself in a tight, nurturing cocoon. There’s another storm coming, with my true rehab looming large in the distance, and I have a feeling it’s going to require further reserves of tenacity and determination. I believe I’ll be ready.

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I have no idea to whom I should credit this quote, but I like it.

 

 

 

My Top 10 Cancer Essentials

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Blue ninja pants AND my machete. Best. Day. Ever.

I am giddy with the self-indulgence of creating a list of my essentials! As a long time consumer of trash news and fashion magazines, I’ve read thousands of these, and now it’s finally my turn. Since I have so often mocked others and their inventory of what is considered necessary, you would think I might be a little apprehensive, and I am, but just a very minuscule, Lilliputian, wee bit. Mostly I’m basking in the intense warmth of the things that have brought me joy and solace, sometimes amusement, over the last year. It grows harder and harder not to think about what I’ll do after I’m declared cancer free and have my sweet little small intestine returned to her rightful place on the other side of my skin, so I’ll use this list as a practice to bring me solidly back into the present and thinking about the things I love and wouldn’t want to live without while being pummeled by my cancer killing champions, i.e., doctors. Do you think cancer treatment could result in the same intense emotions toward your captors as Stockholm Syndrome? I’m going to go out on a limb here and say yes, but this is so not part of my list! Who cares about Stockholm Syndrome when we can talk about the exceptional softness and magnificence of Ninja Pants? And speaking about my number one, all time everything essential, I believe it’s time to get down with this inventory of necessities.

  1. Ninja Pants (http://pimovement.ninja). I love my ninja pants. I wear them everyday. Truly, I spent the last 5 minutes sitting here trying to remember a day in the last few months when I haven’t had these on for at least 10 minutes and I’m coming up empty. They are simply plush. Pi Movement has created active wear that feels like the most luxurious pajamas you will every have the pleasure of exercising, lounging, or dining out in. You might recognize them from my pre-op photo at MD Anderson? They are exactly that hospital comfortable, anti-microbial, moisture wicking, and stretchy in 4 ways. What does 4 way stretch in pants feel like? Order some and find out for yourself, all the while experiencing the warm, fuzzy joy of doing good while looking good since Pi Movement donates 3.14% of each sale to building and improving parks and playgrounds around the world.
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Travis, one of the founders of Pi Movement, in his ninja pants doing ninja type things and making it look easy. Seriously, notice his closed eyes? He might be meditating here. I have no idea. He held this pose for a while.

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Peyton, the other founder of Pi Movement, and I at the Four Seasons both very happily attired in our ninja pants, not performing conventional ninja type feats of daring, but still contributing to their tradition of top drawer awesomeness.

2. Dry brushing. I was first introduced to dry brushing around 10 years ago by my astoundingly talented friend and massage therapist, Tony Senecal (http://www.tonysenecal.com). In those days I had the horrifying experience of the first tiny appearance of cellulite on my tush, and Tony brought up dry brushing as a treatment for cellulite as it helps break down trapped toxins within the fat cells in order to eliminate them from the body. In addition, dry brushing helps exfoliate dead skin, stimulate your lymphatic system, and unclog pores to decongest the skin. If you take into consideration that our skin is not only our largest organ, but also an organ of elimination, it makes perfect sense that with all the chemo, meds, anesthesia, dyes, and toxins that are coursing through my veins, using a dry brush to stimulate my lymphatic system, remove dead skin cells, and facilitate the release of toxins through my skin is incredibly beneficial! And to boot, it makes my skin super soft and helps me to better absorb moisturizers. Brush in a circular motion up toward your heart, if you’re gunning to diminish cellulite, brush those areas until the skin is red. This means you’ve increased circulation and more blood is going to the area.

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My dry brush. Horse hair. Short handle. Stiff bristles for better exfoliation.

3. Soft, cuddly blankets. These are a luxury and a necessity. Hospitals are cold, as are doctors offices and infusion clinics. While they offer blankets in these places that have been warmed in a blanket warmer (heaven), they aren’t soft. They are actually a little scratchy. If there is ever a time in your life when it will be perfectly acceptable to don the  “princess and the pea” sensibility, it will be when you are diagnosed with cancer. You NEED a soft blanket to pair with the scratchy warm blanket because we have cancer and we do not like scratchy things. The royal “we” is very affective when affecting drama. Deep sigh, back of hand lightly to forehead, and gently swoon. Now you have nailed it and everyone will be rushing to provide you with snuggly blankets.

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Barefoot dreams by far and away makes the coziest throws and blankets. Super snuggly, super soft, fit for a princess. http://www.barefootdreams.com

4. Meditation. 5 years ago I was in the thick of a dedicated and devoted meditation practice cultivated over the course of 3 years, and I loved it. During the stress and upheaval of my divorce, probably when I could have used it the most, I fell out of the habit. Over the last 5 years, I’ve often thought about how important it would be to get back to it, but could never recommit. Until this. Cancer comes with a cornucopia of stress and pain, and the more able I am to regain focus and calm my mind, the better I handle everything. Meditation also brings me peace. I’m so tired these days, the rough ones far outweighing the good, and I find a renewal of spirit and energy after sitting quietly for 20-30 minutes. I worked up to that, by the way, and was reminded by a Rinpoche that when you meditate and lose focus then bring it back, you’re flexing a muscle that will become stronger the more you use it. If you try this, which I think you should, let go of judgment and expectation and flex the muscle of quieting your mind. It’s SO good.

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My altar. These are all things that mean something to me and bring me peace. It’s personal. This is my sacred space…you create your sacred space. Voila! All ready to get your focus on. I’m especially fond of this altar because the man who made it seems incredibly nice. Thank you, Yankee Woodsmith! (http://www.theyankeewoodsmith.com)

5. Glass water bottle. Just do it. To be perfectly practical, think of all the money and wasted plastic you will save if you buy a good glass water bottle and refill it constantly throughout the day. Loads! Then you can buy more fun stuff than water! The other perfectly practical reason is that you must drink a lot of water if you want to feel even halfway decent. Water removes waste and toxins, transports nutrients and oxygen, controls heart rate and blood pressure, regulates body temperature, lubricates joints, and protects organs and tissue. Wait, hold the presses! You should be drinking a ton of water everyday whether you have cancer or not, but we all know this, and with certain disease processes, like cancer, it becomes even more important due to high risk of dehydration and the importance of flushing poisonous substances (like chemotherapy) out of your body.

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Look at all these options! Pick one, anyone at all you like, and keep it with you all the time. Personally, I’m really digging that one in the top right corner. Mom, I know you’re reading this. Hint hint.

6. Chemo pump bag. If, like me, you end up wearing your chemo pump for a few days, you will know what I mean when I say these things are boring. Boooooooring. They look like a bad fanny pack. What I’m suggesting will take some crafty creativity because they don’t sell fun chemo pump bags. Leave it to Walshy to create something fun and gorgeous to hold my poison. Once upon a time, that would have referred to a fancy flask, but now its a crazy beautiful medicine bag full of healing energy and love, which I used to consider the contents of my flask. Ha ha. Dress this business up and take it out on the town! I’ve hit gallery openings, restaurants, and birthday parties in mine. Cancer chic all the way.

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Ugggghhh, don’t judge me. I’m not much for selfies in the mirror, but look at this thing! It’s gorgeous and so full of life. I feel strong when I wear it, and that’s a huge gift. Thank you, Allison Walsh, crafter extraordinaire.

7. Toesox. The neuropathy associated with my chemotherapy makes my toes burn like they’re on fire when it’s cold, and I just happen to be going through my chemo during the winter. Please note, we are talking winter in Austin, TX, and it is 75 degrees fahrenheit and sunny today, so not too bad. However, sometimes it gets properly cold here and my hands and feet suffer. They also suffer from cracking due to one of my chemo drugs. Pain-full. Enter toesox (http://www.toesox.com). Not only do they keep each one of my toes wrapped independently in it’s own little blanket of warmth, but they have grips on the bottom, and because I’ve also lost some sensation in my feet, they keep me from falling down the stairs or sliding on my hardwoods. One of my nighttime rituals is lotioning the bejeezus our of my feet with Eucerin, then sliding on my toesox to treat the cracking. This is necessary. I tried putting socks on my hands but I didn’t like it, and I hate sleeping in gloves, so I’ve basically just destroyed part of my linens from greasy Eucerin hands. Whatever, that’s the least of my worries.

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I like to buy my toesox at Somaspace Pilates. Amanda has a great selection of knee highs, above ankle and and proper ankle lengths. She is also really great about getting a variety of colors. And I love supporting local businesses. Ok, full disclosure, she’s also my Pilates instructor, very dear friend, and mentor. http://somaspacepilates.com/wordpress/

8. Books. Lots and lots and lots of books because I have lots and lots and lots of time to read. I sit a lot, and wait a lot. Therefore, I’ve taken these past months to catch up on the years of books I didn’t get around to because I was too busy with my very important life. I love to read, and I love that delighted feeling when I read a string of fabulous words, ponder a new idea, or come across a story that moves me to laughter or tears. I’ll never forget finishing The Amber Spyglass by Philip Pullman on a flight to NYC and sobbing audibly in the last pages. My seat mate was horrified, especially when I looked at him and said, still sobbing, “oh my god, that was phenomenal, I want to do it again,” and I did, just 2 short weeks ago. Bawled. It was still phenomenal. With all that time you will spend in chemo, doctors offices, and hospitals, reading is a great way to make sure your brain doesn’t atrophy.

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My bedside table and what I’ve been doing since last June. So many pleasures in this pile!

9. Cookies. Once again, don’t judge me. Everyone talks about how when you get cancer you should cut out sugar and get all healthy, but what I know now is that when you’re in the thick of it that really doesn’t matter. I’m generally a pretty healthy eater, but I’ve had some challenges. Because of the ileostomy I had a few months where I had a hard time digesting raw foods, vegetables, or even much fruit. I was on a white bread diet. Coming from a woman who has avoided carb loading for 15 years, this was mildly traumatic. Between all the rounds of anesthesia and chemotherapy my test buds have taken a huge hit. Most things taste like metal except for sweets, and I have a real thing for cookies, so I have at least one cookie a day and it’s kind of my favorite thing. I want ice cream but cold stuff is too hard on my throat, and if I’m going to take that hit, I prefer it to be in the form of a rye old fashioned. Therefore, cookies it is, and seriously, even if I were eating healthily right now the affects would be completely diminished by the chemo. I’m being poisoned!!! It doesn’t matter what I stick in my mouth.

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Who in their right mind wouldn’t want one of these?!? Cookies are so diverse in flavor and can be so beautiful in creation. I’m actually considering flying to Australia to get these particular treats. I follow these people on Instagram and think they are fabulously talented! Um, mom, when you order that water bottle maybe you can check out http://nectarandstonemelbourne.com

10. Edibles. I couldn’t get by without edibles. Traditional anti-nausea meds didn’t treat me right. Super bad boyfriends, indeed. The Zofran barely touches my nausea and makes me feel kind of numb and dead inside. Phenergan, the strong one, knocks me out for a minimum of 8 hours, which is no bueno during the day. I’m not a cat! I need awake time. I tried cannabis edibles after my second round of IV chemo and the difference was astounding. They control the nausea, and that makes all the difference. When I’m nauseated I can’t do anything beside lay on my bed and hope it goes away, however, if the nausea is controlled I can move around and do stuff. Also, with the anti-nausea medications I was prescribed, I wasn’t eating because they weren’t all that effective and my weight began to drop drastically. Lose too much weight and they stop your chemo. With edibles my appetite is stimulated and I maintain a decent weight. As well they help me sleep so I don’t have to take Ambien or any of the other sleeping pills. I don’t know what to say beside the fact they are medicine and I would be in a bad way without them. Keep this in mind at the election polls and when reading articles on how Texas will soon push to legalize medical cannabis. Please.