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.

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:

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!

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!

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.

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.

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.

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

“I too am not a bit tamed, I too am untranslatable, I sound my barbaric yawp over the roofs of the world.” (Walt Whitman, Song of Myself, 1855).

“Hanging by a Thread,” Melissa Carroll, 2013 (http://www.melissacarroll.com)

“Yawp” as defined by Oxford Dictionaries:

yawp
yôp/

noun
1.
a harsh or hoarse cry or yelp.
verb
1.
shout or exclaim hoarsely.

The news of David Bowie’s passing coupled with the release of his last studio album, “Blackstar,” has garnered an abundance of media attention over the last weeks. I’ve read multiple posts by people discussing how difficult it must have been for him to make such a complex, artistic masterpiece while undergoing treatment and facing his inevitable finitude. This lead me to consider the post-humous publication of Dr. Paul Kalanithi’s, “When Breath Becomes Air,” (http://paulkalanithi.com) written as he was dying from metastatic lung cancer. I think of Melissa Carroll’s raw, intimate, affecting portraits during the years preceding her death from complications of Ewing Sarcoma. As Bernie Siegel, M.D., internationally recognized expert in the field of cancer and holistic treatments writes “I and others have learned…that the side effects of cancer may not all be bad ones.”

“I don’t believe in the wisdom of children, nor in the wisdom of the old. There is a moment, a cusp, when the sum of gathered experience is worn down by the details of the living. We are never so wise as when we live in the moment.” Paul Kalanithi, When Breath Becomes Air (2016).

Most of us, when envisioning the typical cancer patient, conjure images of the bald-headed, bedridden, vomiting, gasping invalid who can barely muster the strength to walk to the bathroom. Sometimes that’s it, but when you’re dealing with illness every day, it also becomes something you push through, mostly, except for the days when you don’t, and that’s when a cozy bed becomes the worlds greatest treasure. There is no more astounding motivation to be, and by “be” I mean exist to the best capacity of your human potential, than when the veil is lifted and we’re facing our mortality head on with the intimate realization of how little time we actually get to enjoy here. What better manifestation of our existence than to continue living, continue sharing our story, and allow others the opportunity to bear witness? Dr. Paul Kalanithi was diagnosed with Stage IV lung cancer at the age of 36 as a resident neurosurgeon at Stanford Medical Center who had begun his education in English Literature, attempting to discover, through literature, what makes a meaningful and virtuous life. As a physician turned patient, he was able to dive into this question in his book “When Breath Becomes Air,” with a point of view he probably had not anticipated, and through a long love of literature and writing, dismiss himself from the world with some elegant and achingly insightful parting thoughts. Healing is done on more than just the physical plane.

While it might be surprising to someone who hasn’t undergone cancer treatments that inspiration and life force may thrive in the midst of punishing therapies and surgeries, I can tell you that I’ve never in my life been more motivated to live. Not everyday is created equally. Some days edible anti-nausea therapy (i.e., marijuana) and my bed are all I’ve got, but most days there’s enough extra that my medicine is creating, exploring and experiencing. I’m often surprised to hear that people are pleased to see me out in the world, because personally there’s no place else I really want to be. I’m experiencing a stunning renaissance of my senses through sight, touch, and sound. While my tastebuds continue to dull, I find that nature’s colors have never been more vivid. I am captivated by the sky and it’s vibrant blues during the day, and pink, purple, dreamy spectrum at dawn and dusk. I walk around touching tree trunks and grass and marvel at the energy and power coursing through and, not to be a total hippy, feeling it flow into my veins. The sound of the wind feels like the elements speaking to me. The world is so very alive, and it calls to be expressed. There’s a feeling that to sound a “barbaric yawp” takes absolute presence in the moment, and speaks to a raw emotional connection brought to the surface by an arduous diagnosis that demands to have a voice.

Sunrise on a beautiful Texas two lane blacktop. No filter necessary. This moment was astoundingly perfect.

A few years ago I became aware of Melissa Carroll’s artwork through a random acquaintances Facebook page. This was prior to my diagnosis, and I was drawn in by this beautiful young woman and her portraits, then saddened by her death even though I never met her. After I was diagnosed my mind would often stray to her work, and the more I began to think of the way creativity stems from the sagacity of trauma, the more I was moved by the wisdom portrayed in her watercolors. When I wrote Melissa’s mother asking for permission to use one of Melissa’s pieces, she very kindly wrote me back and in the text mentioned that while Melissa was often in pain or discomfort she usually had an upcoming function that she would set as a goal. She would physically and mentally save up for these events, and then she would show up looking amazing and enjoy herself fully. In between the days were hard and the treatments punishing, but she continued to squeeze vitality out of her life, and I see both of these reflected in her work. I’ve actually seen this more and more often since getting diagnosed, and I think it’s one of the most important messages we can pass on to cancer patients. Explore every aspect of what you’re going through. Find your passion and practice it. Move your body so that it remembers its strengths. Exercise your mind so that it continues to seek. Pass on the hard-earned wisdom cancer brings whether to a tiny or gargantuan audience. People frequently mention how healthy I look, and while I know part of this has to do with a generally wholesome (don’t laugh) lifestyle, I also believe it has something to do with exploring my inner world through outward expression. To draw despite serious lack of skill, paint for the joy of subconscious to canvas, and write whatever happens to flow into my brain because it seems the thing to do is an epically fantastic way to unburden yourself. It takes years off when we lighten our emotional load, even better than a month at Canyon Ranch.

“Every Time I Lose an Eyelash I Make a Wish,” Melissa Carroll, 2013. Prints and postcards are available on her website. Print sales go toward publication of her work in book form. (http://www.melissacarroll.com)

We have phenomenal examples of people who have not just carried on, but have delved deep into themselves to demonstrate this reality of cancer’s creative yawp, because no matter what, it is a “harsh or hoarse cry.”  The elegance and magnificence that seems to be inherent in works stemming from desolation is very much a part of the human condition. Dr. Kalanithi writes, “Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving.” And this is rarely more evident than in people who can see the end of the road. Melissa’s paintings are overwhelmingly powerful and vulnerable in their expression of her experience, her eyes sometimes mocking her situation and sometimes revealing sadness. Dr. Paul Kalanithi’s book about facing his mortality after years working as a resident neurosurgeon speaks to grief and death with the voice of someone who pondered these ideas long before his diagnosis. Bowie’s “Blackstar” will forever be one of the most powerful and moving farewell’s I’ve had the intense pleasure of luxuriating in. Every cancer patient could benefit from encouragement to explore the inner workings of their spirit so that they may more intimately understand the complexity of this messed up diagnosis. It seems like a good way to let the mind go and the soul lead.

As much as I’m sitting here today, connected to my port, trying to control my nausea, not caring whether or not I actually get out of bed at all, I am inordinately grateful that I’ve been given this last year to reestablish my relationship with inspiration. And not only reestablish the connection, but the love of seeking out inspiration, sitting down and showing up for it, and making space in my life to embrace it in many forms. For my birthday an old friend, Melissa D’Antoni, who is the Founder and Director of Fire Tree Studios (http://firetreestudios.com), invited me to join a workshop in Austin. Fire Tree Studios specializes in “intuitive, expressive and visionary painting experiences, integrated within a solid coaching framework.” It was phenomenal. I haven’t put a brush to canvas in approximately 30 years, maybe longer, and the beautiful thing about this method is that it isn’t focused on technique, skill, or talent (for the best in my case), but on a direct connection from soul to paper. Spending the day relishing the solitude of the space and time dedicated to this meditation felt really good and simply offered me one more experience that I previously probably would not have made space for. And painting is great for neuropathy, as is any technique that employees fine motor skills. Hard to go wrong here.

Oodles and gobs of paint and materials with no expectations other than focusing on the outward expression of the internal world. “And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” (Anais Nin)

I love the myriad outlets available to tap into creative expression to address healing not only on a physical level, but an energetic and emotional one, as well. It’s entirely too easy to focus healing on an exclusively corporeal plane, thereby ignoring the inner process that is inevitably part of any chronic or burdensome disease. Between the scans, preps, blood work, infusions, surgeries, meds, and other treatments, the primary goal becomes eradicating the cancer, and this is a fantastic goal, but it seems like a really great idea to address the emotional aspect of all this, too. Talk therapy is always an option, and I’ve been pleased to have counseling offered often throughout this process, but it also hasn’t been something I’ve been inspired to do. In lieu of this, I’ve sought to tap in to my inner workings by departing from my normal routine to include a lot more left brain activity. These practices have provided an abundance of opportunities to comprehend the last year and how it’s changed me, and the motivation to make these changes permanent. I don’t want to go back to living to get by, which arguably looked pretty fun from the outside, and was also pretty fun from the inside, but devoid of the lavishness of being truly attentive to the passing moments. There are a million ways to pursue an expressive creative outlet, and here are a few of my favorites:

• Write it down. However much you want, even just two sentences a day, will provide a channel to rid yourself of some of the excess sludge or glory rolling about in your subconscious. Stream of consciousness is amazing, so write without thinking, and if you don’t want yourself or anyone else to ever see it, then burn it, flush it, rip it to shreds. The entire point is expressing yourself in a way that only takes you and your emotions into account. We spend way too much time trying to make others comfortable in order to make ourselves more comfortable. Don’t do that. Let it all go and see how you feel.
• Paint. Draw. Sculpt. Watercolor pencils are awesome, as are crayons, charcoals, pastels, and clay, to name 4 simple mediums. It doesn’t matter if you have an ounce of skill, sometimes it just feels good to get lost in the doing of it. You take out the middle man in this form of expression and enjoy the pure flow of subconscious material. A truly phenomenal way to purge.
• Adult coloring books. I hadn’t heard of this prior to all my time spent in medical environments, but apparently this is a big thing, and I love it! My aunt sent me my first coloring book and mentioned that while my uncle was undergoing his years of treatment for multiple myeloma, she was introduced to these books and found it therapeutic. Here are a couple of my favorites: https://www.etsy.com/shop/PixieRahDesigns (the profanity coloring book. coloring profanities is an absolutely delicious pastime. please google Dame Judi Dench’s favorite pastime of needlepointing profanities while on set). http://www.johannabasford.com (any and all of her coloring books are intricate, meditative, and fully absorbing).
• Dance, sing, flow. Simply moving your body is artistic and creative, especially when you don’t think at all about what you’re doing. And it feels good. There are days when I have 30 seconds of dancing in me, max, but those are 30 great seconds, and I always sit down, fall down, or lie down with a smile on my face afterwards. If nothing else, I have enjoyed one of my personal favorite pleasures and we should all sprinkle our day with little pleasures. It’s almost impossible to argue with this logic.

Can you believe I’ve never had a lesson? My inner gold breathing bronco partying on his bloodied hooves. What I lack in talent, I make up for with enthusiasm.

Regardless, it all comes down to this, and I think tapping in to the inner workings of our souls to sound a creative yawp is a staggering way to address the following massively important philosophy:

• What, if some day or night a demon were to steal after you into your loneliest          loneliness and say to you: “This life as you now live it and have lived it, you will have to live once more and innumerable times more; and there will be nothing new in it, but every pain and every joy and every thought and sigh and everything unutterably small or great in your life will have to return to you, all in the same succession and sequence—even this spider and this moonlight between the trees, and even this moment and I myself. The eternal hourglass of existence is turned upside down again and again, and you with it, speck of dust! Would you not throw yourself down and gnash your teeth and curse the demon who spoke thus? Or have you once experienced a tremendous moment when you would have answered him: “You are a god and never have I heard anything more divine.” If this thought gained possession of you, it would change you as you are or perhaps crush you. The question in each and every thing, “Do you desire this once more and innumerable times more?” would lie upon your actions as the greatest weight. Or how well disposed would you have to become to yourself and to life to crave nothing more fervently than this ultimate eternal confirmation and seal? –Friedrich Nietzsche, The Gay Science: with a Prelude in Rhymes and an Appendix of Songs

My 44th birthday, last Thursday, with some of the people I love, in a place I love with the entirety of my being, celebrating everything. Lots of folks aren’t pictured, but it was a magical, easy night. Isn’t Texas pretty, y’all?

Since being diagnosed, I’ve had multiple friends thank me for providing them with a road map on how to be the most helpful during this experience. Each time I find it surprising, because I don’t have, and never have, devised a plan for how they could help me. How can you map a journey you’ve never taken? Each persons travel log of cancer is unique, with different hills, valleys, oceans, and paths, and I’ve traversed them the only way I know how, winging it and hoping for the best, much like my first 44 years on this planet. My friends are my significant others, for now at least. I don’t know how this happened, beside them being the most fun, honest, supportive, loving, witty and cheeky group of people I’ve ever had the ridiculous pleasure of living my life with. We haven’t followed traditional paths, even the married with children ones, and it’s evolved into a community of support and good times that is unrivaled. They are my peanut gallery, mutual adoration society, frontal lobe (on occasion), great loves, and confidantes on all things, so it never crossed my mind not to call them immediately after my diagnosis. That was one of my best decisions, yet.

Maya Angelou often says it best. It’s amazing the way they came when I let them know I needed them. The best way to get support or help when you need it is to ask.

I called and they came, oh my god, did they ever show up. It began with phone calls that day where I laughed while they cried. The most insane grocery delivery maybe ever in the history of grocery delivery, filled to the brim with every anti-carcinogenic remedy available and enough tea to last a lifetime. A postcard campaign where they all piped up with humor and love, sent insanely beautiful flower arrangements, and surprised me with impromptu gatherings where they all dropped in to be there and talk it out: what’s the plan, who do we know, what does this mean, and lots of jokes about rectal cancer. Like I’ve said before, fear and anger won’t thrive where love reigns, and having this support from the beginning was hugely motivational in respect to facing my immediate future head on.

Fay Wallace. The woman is a researcher extraordinaire and knows her way around grocery delivery like no one I’ve ever known. She was planning on curing my cancer herself. I’m a fan of that “can do” attitude. 

I also have one of the most supportive families in the world, and without some outside assistance, this would place an unfair burden on them.  I can’t imagine doing this without their help, and they are relentless when it comes to fighting on my behalf. The hours logged by my mother and sister working through treatment options, best practice for my particular cancer, and the crazy maze of healthcare and insurance have been insane. My father is committed to his particularly important job of making sure we don’t all completely spin out. I can’t imagine how much energy that takes. They couldn’t do this on their own because there simply aren’t enough hours in the week for them to help me take care of the necessary while living their lives at the same time. Having the additional support of my family of choice has given them much needed peace of mind and some time to breathe, which they would never ask for.

On a practical level, it didn’t make sense for me to try to keep my diagnosis quiet. Austin, TX is an island, and once one person knows, soon most people will know. Being from a small town it has never occurred to me that privacy was really an option, and due to my wide social circle and frequent socializing, it made a lot more sense to put it out there. Because of this, I frequently hear from friends all over the world and all over the country, and those doses of light keep my cup filled. My openness also served the purpose of avoiding awkward conversations where people wanted to ask, but didn’t know how. I have experienced the luxury of very few meetings with people who struggled through the thorny question of “how are you,” while kind of knowing how I am,  because I was able to set the tone for being a relatively open book about this early on. Sympathy, compassion, humor, love, all of these are wonderful, and I continue to get loads of them.

In general, friends and acquaintances, even strangers, want to be helpful, but often they don’t know what to do or necessarily how to show their concern. I’ve found it makes them feel good to be of service, or offer words of support. Cancer might suck, but it’s also been a bit of a vision quest, so talking about it doesn’t usually send me into tears or fits of melancholy, well, maybe tears, but that’s only because chemotherapy drugs often inhibit the release of serotonin, so I cry all the time at everything, when I’m happy, sad, complacent, it’s ridiculous and kind of fun all at once, but I digress. What I’m trying to say is that by being open with people about my diagnosis, it let’s them see into a world that while somewhat frightening, is also negotiable and not always as scary as it seems, and it allows them that heart warming pleasure of getting to connect with another on a deeply human level. Like Heath McManamy wrote in her farewell letter, “…cancer may have taken almost everything from me, but it never took my love or my hope or my joy. It wasn’t a “battle” it was just life, which is often brutally random and unfair, and that’s simply how it goes sometime.” Cancer is a diagnosis, the rest is just my life.

In the beginning we tried a care calendar with pedicures, dinners, and the like, but soon learned that my schedule was in entirely too much flux to make that work, and I didn’t know what I wanted to do on a daily basis! I was in even more flux than my schedule. Instead of a care calendar they simply checked in a lot. When I had my chemoradiation in Houston this summer, I had a revolving door of friends coming to stay and take me to radiation each day. They met my radiation techs, doctors, and other caregivers. When I came home from treatment they made sure I was kept properly entertained and fed. Leading up to my surgery they stayed close and constantly available. After surgery they watched me struggle my way back into the world of the living, and now they’re sitting through hours of chemotherapy with me as though it’s the best offer they got that day. They let me be sick when I’m sick, and they are up to laugh and play when I’m feeling well, which is more often than I should. They are even asking my chemo-addled, funky brain to teach them Pilates when I’m up to it! Brave, loving, supportive souls.

KK’s couch. I stayed here for approximately 48 hours after my last chemo disconnect, groaning every 5-10 minutes, staring at my favorite guy, Bill Nighy, and watching tele. Nobody cared, they just took care of me.

I recognize that involving friends and family, or anyone, in your diagnosis is a personal decision, and is most certainly not for everyone. I have known very rational, astute, brilliant people who have decided to keep their diagnosis and treatment private. David Bowie died last week having never disclosed his diagnosis to the public. He knew he was dying for 18 months, and in that time produced one more magical piece of art that was released on his birthday, two days before his death. There is so much beauty in the fact that he chose his art as his final act and not his illness. My uncle, nicknamed Atticus Finch, was by far and away one of the best, most complicated, truly good people I’ve ever known, and he kept his diagnosis under lock and key for 7 years, and much like David Bowie, people were shocked to hear he had died from cancer. He couldn’t stand the thought of anyone looking at him with pity, or feeling sorry for him, or offering to pray for him. The man had no tolerance for that business. Cancer is an intimate experience, it cuts deep and exposes our most fragile nature and unexpected grit. If it is something you want to share, this is the closest I can come to a roadmap:

• Share your diagnosis with the people closest to you. How do you do it? My method was to vomit this information. “Hey, yeah, done with my colonoscopy, thank god. That prep is horrible. They found a malignancy. Cancer. I don’t know, but it’s big. Oh no, don’t cry!” is how most of my conversations went. I’m quite sure that someone with more tact could have done this better, but at that point tact wasn’t a priority.

• Think about what your needs actually are and don’t be afraid to state them. Early on, I knew the last thing I needed was people bringing me food. I didn’t know what I wanted to eat day to day, so having people sign up to bring meals wasn’t helpful. What I find more beneficial is having friends available to take me to appointments and hang-out. I enjoy that, and most of the time it makes something that is not fun at all seem fun. Perception is reality. I also like having dates to walk, and a good friend made the excellent recommendation of having a text list of people I can shout out to when I want company so that friends don’t feel as though they’re bothering me. They won’t all be available at the same time, but if someone’s in the neighborhood they can drop in and watch me groan on the bad days. Everyone’s needs are personal, and taking the time to truly assess what yours are will serve you well.

• Communicate. It’s okay to say you feel like garbage, and it’s okay to say you’re having a fantastic day, because both of these things will be true. If you want company ask, if you don’t want company say so, if you need help ask, and never be afraid to say no or maybe later. This is absolutely the right time to be selfish and upfront about your needs, and unfortunately sometimes people are trying to be helpful but offer up exactly the wrong thing. Don’t worry about offending them, because this is actually about you. Of course, we all know how to be polite when refusing an offer of kindness, so don’t go all cancerzilla, just politely decline. Also, many of your friends won’t know how to talk about this with you. Cancer is scary and everyone thinks you’re dying whether you are or not. Only you can set the tone for how these conversations will go, and I promise most people will follow your lead. Hopefully.

• Say yes to the sweet things people want to do for you that seem oddly extravagant. Some of the dinners, vacations, warm, fuzzy blankets, and love gifts have brought me so much joy in the face of something that is not joyful. A group of my besties got together and have a cleaning lady coming to the house once a week. I’m an OCD lunatic when it comes to a clean home, and it has been phenomenal to know that I don’t have to worry about cleaning the house when I’m sick (because I will), and when I’m feeling great, I don’t have to spend that time cleaning my house (because I will). If you could see me right now, I’m prostrating before them in my mind shrine. Seriously perfect gift.

I recently spoke with a couple of friends who expressed how important it has been that we’re going through this together, and it is. I live my life with them, and they have borne witness to my pain, tears, joy, triumph, anger, and rising through this roller coaster of cancer. In the end we will have shared this experience, but as Rilke said “even between the closest people infinite distances exist.” I can no more share this experience completely with my loved ones than we can share any journey in our lives with another, even when walking hand in hand through it. They will never know the depths of my despair when it has felt like too much, the increasing desire to beg them to stop poisoning me and cutting me open, or the sleepless, pain-filled nights when I lay restlessly imploring the universe for mercy. And the fact is that these moments have been for me alone because they have been the moments where I’ve grown the most. What truly matters is that this loving group has spent the last year giving me the gift of their affection, time, and commitment, and although I know I could have done this without them, I’m immeasurably lucky that I haven’t.

George P. Walters, a.k.a. Uncle Atticus, a.k.a. Uncle Cookie. He was ordained to officiate my wedding and they used one of those photos at his funeral. It meant a lot. This quote always made me think of him, even when I was a kid. “Courage is not a man with a gun in his hand. It’s knowing you’re licked before you begin, but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do” (Harper Lee, To Kill a Mockingbird). I miss him.

David Bowie, January 8, 1947 – January 10, 2016. I’m so lucky that I’ve never known the world without you.

This wasn’t at all what I had planned on posting today, but when I woke this morning to the news that David Bowie had quietly passed away yesterday, I couldn’t imagine writing about anything else. With shock and sadness I read post after post stating that this ethereal starman had died of liver cancer 18 months after being diagnosed. At first I thought I was crying because one of my greatest influences had been taken by cancer, and then I realized I was actually crying because I was utterly overwhelmed by his dignity and dedication to his creative life. He released his last album “Blackstar” on January 8, his 69th birthday, just 2 days before his death. I truly believe that his life force and creative process were so intertwined that he was completely tapped in during these final months, and he was able to offer this “parting gift” almost simultaneously  with his return to the stars. Awe inspiring.

In case this reality has somehow escaped you, let me offer the only statistic I’ve ever read that applies across the board: 1 in 1 beings born will die. Yes, you too. The only guarantee we get in this world is one breath in, one breath out, and like my grandma used to say, “sugar, no one gets out alive.” You were lucky enough to be born, that alone should inspire feelings of awe and reverence, and as far as we know for sure, we only get one of these, so in light of David Bowie’s bright, brilliant light, I think it’s a good day to talk about living well to die beautifully.

Evidence of a life well lived.

What struck me the most reading interviews and quotes by the unrivaled Mr. Bowie, was that he experienced the unique human event of spending his time on earth dedicated to his life’s purpose, his soul’s code, his calling, as it were. To quote James Hillman from “The Soul’s Code,” his unparalleled work on the soul, character, and calling, “the ‘acorn theory’…holds that each person bears a uniqueness that asks to be lived and that is already present before it can be lived.” In essence, he’s stating that each of us are born into this world with a purpose, something to which our soul is called, and many of our inner and outer struggles are born of neglecting that purpose. For most humans, our soul’s code requires seeking, because as children these natural tendencies are diverted to “important” tasks, like how to tie our shoes, make a bed, sit still in school, and become productive members of society. This isn’t to say these tasks don’t have their place, but what of the more dazzling skills we’re born to examine? The child who daydreams is encouraged to get his or her feet on the ground, but what’s so impressive about the ground when you can have your head in the stars? Does someone with his feet on the ground create Ziggy Stardust? I’m mostly sure they do not.

These should be all our questions, despite age, but they only became mine when faced with an absurdly life affirming case of the cancers.

What do you want to do with the time you have left? And remember, you have exactly no idea how long that is. I could survive all this only to drop dead of an aneurysm tomorrow. No one gets out alive, sugar. The further along I journey with my cancer, the more apparent it becomes that my purpose is demanding to be heard. I was in a career that I happened to be naturally good at, care taking is one of my inherent skills, and I have always been interested in health. To the outside observer it all fit, and to me it was fine, definitely better than the myriad of careers I held before becoming a home health PT, but it doesn’t speak to my soul’s code. I had become bored, uninspired, and disillusioned working in healthcare, and it was numbing my spirit. I wouldn’t wish what I’ve been through on anyone, but it’s also forced me to stare down the barrel of my choices, and I’m choosing to seek a fulfilled life because of it. I don’t know what that means, exactly, but I do know that we all have the ability to follow our passions, whether it’s after work, on the weekends, or all day long, and the gift we give humanity by doing so is one of beauty and inspiration.

You, too, have the potential of a superman. Infinite, luminous, exceptional potential, and through this you will live on.

The next question becomes what will I do with my return to purpose? I don’t know, but since I have the potential of a superman, I’ll most certainly do something that makes my soul soar. As a child I loved writing, and wrote often with great joy until the fear of not being “perfect” took over. I’ve taken writing out of the compartment I’d shoved it into somewhere in the back of my brain and love the feeling of connecting to that again. I love teaching Pilates. I love it with the passion I always wanted to feel for physical therapy, therefore, I think I’ll be doing more of that. Whatever I do, it will be done with my soul’s code as its nucleus, and David Bowie will continue to be one of my principle teachers. Thank you for the parting gift of “Blackstar,” for your passion, and for the stellar gift of your life. I am permanently altered because of it.

“There’s a starman waiting in the sky. He’s told us not to blow it ’cause he knows it’s all worthwhile.” The stars will shine more brightly now, as will we all.

Today I am full of righteous indignation. I am angry, and my rage is directed at the healthcare system and insurance companies. Inside I’m roaring so loudly that they must feel the quaking of my fury. My wrath is properly directed because they are wrong.

Since May 20, 2015 I have praised my Blue Cross Blue Shield PPO Gold Plan. From MD Anderson to pharmaceuticals and multiple doctors, my coverage was excellent. As a contractor with home health agencies I was ineligible for group plans, and therefore chose an individual plan with a decent deductible and vast coverage. Because I drove so much each day for work, the assumption had long been that eventually I would be in an injury car wreck. Instead I got cancer.

I met my deductible on this plan 1 week following my diagnosis due to blood work, scans, and multiple office visits to different doctors. I raved to everyone who would listen about how well we had been treated and how comprehensive this plan was. I felt as though my needs were met and I was appreciated as a client. This autumn I was informed that BCBS was dropping all of it’s individual PPO plans in Texas, affecting upwards of 360, 000 clients,  and none of their HMO’s would cover treatment at MD Anderson. Upon further investigation, I found that not a single available individual insurance plan in Texas would cover treatment at MD Anderson. It felt like getting sucker punched, and I cried out of anger and frustration, because my safety net was snatched away from me and I was in absolute disbelief they could do this. But they did, and they can, and that is absolutely, positively appalling. Someday we’ll get in to the exemptions I have to request for my follow up surgery to be performed at MD Anderson. That should be rich.

Here’s what I know: my monthly cost for this new HMO has increased , I have fewer options for doctors in my network, certain prescriptions will not be covered, prescription cost will be higher, and I have to see my primary care physician (PCP) to visit any specialist, although my PCP who I recently started seeing is not covered by this plan. On the upside, Texas Oncology (TO) and my medical oncologist in Austin, Dr. Yorio, are covered. Which is good, because they really are almost the only game in town. I believe it’s called a monopoly.

This last Thursday, December 31 at 4:30 in the evening, I received a call from Texas Oncology telling me my chemo on Monday, January 4th might not happen because with my new HMO I would need a referral from my PCP and prior authorization to continue treatment. This was lovely information to receive at the 11th hour, and more importantly I couldn’t believe that TO or BCBS would allow my treatment, and that of many others, to be interrupted in the middle of an established Plan of Care (POC). Matter of fact, it was so completely unfathomable that I proceeded to call BCBS and ask if this was true. The information I received during that phone call was that I would not need a physician referral or prior authorization to continue my treatment. When Texas Oncology called again on Sunday to say I probably wouldn’t receive treatment the following day, I told them what my insurance told me, and decided to go in to the office on Monday as if were all going to be fine.

I did, and it wasn’t. Apparently, BCBS had quoted me the out-of-network information. Here’s what blew my mind about TO, they had the option of proceeding with my chemo and retroactively billing for their services after I saw my PCP for the referral to get authorization. They chose not to exercise this option and instead interrupt a POC that they had established and is considered the gold standard in follow up chemo for my particular needs. They CHOSE not to administer my chemo. To simplify, they screwed up by not getting me this information in a timely manner, and my treatment schedule was affected because billing retroactively is a pain. I wasn’t the only patient in Texas who had this same issue. I also know for a fact now, that in the eyes of Texas Oncology and BCBS, I am not a human seeking assistance for a disease that is both physically and mentally exhausting, I am a unit of income, and that hurts my feelings. See, look Texas Oncology, you hurt the feelings of a cancer patient. Good one.

The silver lining on this cloudy day was that Fay came in to Austin to take me to chemo and we ended up spending a great day running errands, taking down my Christmas tree, and enjoying solid quality time. Love you, Fay Fay!

After letting them know I would be writing letters to the Joint Commission (the accrediting body for healthcare organizations in the United States) and Senator Kirk Watson regarding these matters, I proceeded to take care of business. First up, call the PCP that I had chosen from the list of approved providers provided by BCBS. Dr. Yorio sent her an email trying to get me in promptly, and after leaving his office I called the number BCBS had provided. The receptionist when I called informed me Dr. Buttrey hadn’t worked in their clinic for almost a year and had transferred to a community clinic that didn’t take insurance. Pardon? You must be mistaken. Please tell me you’re joking. She wasn’t joking. Dr. Buttrey was at that clinic part time, and the rest of her time she had switched to specializing in Dermatology. Even writing this, I feel as though my brain might burst. Pulling it together, because that is my only option, I called the Seton clinic where she had been previously and discussed my PCP options. Fortunately, they were able to make an appointment for the following day with a doctor who was both in network and a PCP. For the love of all that’s holy, can you imagine how many people had to do this? Shame on you BCBS, shame on you! However, Dr. Kerr saw me the next day, gave me my referral and her representative sat on hold with BCBS for 2 hours to get my authorization for a treatment I was in the middle of and had previously been approved by them. What a waste of resources and time.

In the end, my chemo was only delayed 2 days, which isn’t as bad as it could have been. But 2 days is 2 days. I’ve been doing this almost exclusively since May 2015. I’ve either been in treatment, preparing for treatment, or recovering from treatment for 8 months. Even 2 days is too much when I am so close to being past this. What if I wasn’t this proactive and it had been a week or more? Why would you do that to someone? I’ve done everything they asked and more. I am SO doing my part, and I am doing my part so well that I expect them to do theirs, too, and right now they are failing.

KK and I are SO excited I finally got to resume my chemo and that I’m one day closer to being finished!!!! We’re also just having a really nice day together while I get juiced. I am crazy, mad, wild about my friends!

P.S. Hey, BCBS executives of Texas, sorry your salaries were flat last year, but maybe now you can have an increase from the millions of dollars you were paid in 2015, which obviously wasn’t enough. Someday, how about we have a sit down and discuss what “plenty” means, because you have plenty! More than plenty, you have lots, you greedy SOB’s, and you’re making it on the backs of the sick and those in need. There’s a special karma coming your way, and my only regret is that I probably won’t be there to see it.

P.P.S. I neglected to mention when I posted this earlier today that my gripe with Texas Oncology doesn’t pertain to my care. My doctor, the office staff, and clinicians who have helped me have all been excellent, and I thank them for their care. However, this seemed unnecessary and like bad policy, so I’m complaining.

As the darkest days turn back toward the light, all the possibilities and hopes for the new year begin to shine brightly, and then we crush them with guilt from resolutions we don’t keep. “I resolve to exercise at least 5 times a week, become a vegetarian, only have 5 drinks per week, lose that extra 10 pounds, etc and pointless etc.” As January turns to February, we’re already failing miserably, mentally beating ourselves up, and then letting it go altogether, which is exactly why I stopped making resolutions years ago and began setting intentions.

What, you may ask, do I know about setting intentions? Obviously not much, because last year on New Year’s Eve, I stood at an open window with one of my best friends and set my intention for 2015. Here is what I yelled with all the force of my being to the universe:

“I will make 2015 a year of health! I will sleep more, drink less, and focus entirely on my health!”

Barbara and I at midnight on New Year’s Eve 2014. All ready to set my intentions in a blue sequined tuxedo jacket with a few bottles of spectacular champagne swirling about in my brain. God, I love good champagne.

Please tell me you see the humor in this, because the universe answered my call. 2015 has been almost entirely about my health; I have slept more and drank less than I have since I was 16, but in my sincere commitment to this intention of a health focused year, I forgot to specify. As I yelled out that window I might have included that I hoped to accomplish this by devoting myself entirely to my Pilates apprenticeship and perhaps drinking more water, cooking at home, and pushing for 7 hours of sleep a night. I did not mean to achieve these goals by being diagnosed with cancer. Oi vey.

Intentions are an act of self kindness. Intentions differ from resolutions in that a resolution is defined as “a firm decision to do or not do something,” or “the act of finding an answer or solution to a conflict, problem, etc.” The first definition requires us to force something upon ourselves, and if you’re like me, I push back against force. If I resolve to never eat cookies again, I’ll end up eating 20 a day until you’re cutting a hole through a wall in my home to remove my gargantuan carcass. The second definition requires an action plan with consequences and rewards. I’ve never known anyone to set a new year’s resolution by creating an action plan. That is type A business of a magnitude we don’t often see around here.

Intentions, however, are defined as “a thing intended; an aim or plan.” This is gentle, focused, and allows room for our efforts to swing back and forth like a pendulum as we seek balance in achieving these goals. When you fall off the wagon you get back on without guilt all through the year, or as long as it takes, to achieve your aim and set it as the new normal.

My brilliant friend Carrie Contey and I discussed this the other night, and she told me that she has often had clients write what they see as an “achievable” intention and then the one they really want, the grand one, the over the top, living the dream one. She encourages them to be as specific as possible, and says that very often her clients achieve that over the top goal. Don’t be afraid to aim high, and be specific. Add the important details, and then paint a picture of them. Get creative. Seriously.

Look at this beautiful woman with her infectious smile! And her shoe collection is stunning. She’s a parenting guru and lifestyle expert, and speaking with her always sparks joy. (carriecontey.com)

I think about my intentions often throughout a day, and like exercising a muscle, each time I bring them back into focus and behave accordingly, I find myself closer to achieving my aim. Like I said before, I am motivated by anything I can treat as a practice, and to approach an intention as a practice engages my mind and holds my interest, necessary for success. This week I’m working on the wording of my intentions for 2016. The goals themselves are clear in my mind, and revolve around 3 words: liberation, ecstasy, now. Get your dirty minds out of the gutter! In 2016 I intend to become liberated and live ecstatically by living in the now. No big. Well, absolutely big, but 2015 taught me that I can do anything. I feel freer than I think I ever have, and oddly happier than I’ve maybe ever been, but that’s not enough. Liberation trumps freedom. Ecstasy trumps happy. As they say, go big or go home.

This is freedom and joy. Can you even begin to imagine what liberation and ecstasy will look like? I can. I love these ladies so much!

In the meantime, i.e. the next 2 days, I will work on that sentence, look for pitfalls, accept the fact that it might not be very specific (but I actually believe it is), realize I could never plan for all the curveballs the universe can throw, and at the stroke of midnight shout it out with all the mighty force of my being. Only time will tell what I set into motion.

*side note. As 2015 comes to a close, it would be insane not to bow before the people who have lit my way through this year with love on a scale I could never have imagined. If I started to name them all (which would take hours) I would forget someone, and that would be absolutely unacceptable, because there have been huge gestures and small kindnesses alike that have affected me in ways I’m currently unable to express with words. All I can say is that my life will move on with an intention of paying these beautiful acts forward in honor of you all. To quote Mark Helprin from “Winter’s Tale”:

“The sicker I become, the more clearly I can see that everything is connected by light.”

With all my experiences over the last year I am now able to confirm that this is true, we are all connected by light. Happy New Year, and welcome 2016!

This is my port when it’s all hooked up. Good times.

Chemo. Chemo chemo chemo. What to say about chemo? In some ways, what I want to say about chemo is f*#k you people for not being able to do better. This is awful. It makes me feel crummy and I think there has to be a less cruel way. However, if wishes were horses, beggars would ride (to quote the old proverb). So chemo, specifically intravenous chemo. Thank you intravenous chemo for knocking out whatever little microscopic cells might have migrated to my liver and lungs thereby wreaking havoc in the future. Thank you and f*#k you.

As far as I’m concerned, intravenous (IV) chemotherapy goes something like this: they stick a port in your chest with a line leading into your jugular vein. A port is a small disc of plastic or metal that sits under your skin and has the shape of a tiny eclair. Kind of. My friend Gail called it her alien. Maybe it looks like a large mass. Whatever. It’s there and when you come into infusion clinic they can draw blood through it OR administer meds, on infusion days they do both.

I do a 3 day infusion every other week. On Monday, the clinic administers the bonus fluids and first drug in clinic, then I leave connected to a portable pump that will administer a second chemo drug for 48 hours. I go back on Wednesday and they disconnect me. When I go in to clinic on Monday, they connect the IV to the port first, which is the picture above, and take blood. Then the nurse starts the drips. Plural. I get dextrose, then a big bag of fluids, a steroid, 2 anti-nausea meds, saline, and oxaliplatin (the chemo). All of this, plus a quick doctor visit, last about 6 hours. Midway through I start to feel a little nauseated with a metallic taste in my mouth that is always kind of there making wine taste like vinegar (sob). The 3 days of active chemotherapy affect my tastebuds the most. Before the end of the infusion I have developed a cold sensitivity that will last for 5 days following my disconnect on Wednesday. I cannot drink, touch, or feel cold. Take that back, I am able to touch cold things, but it’s incredibly unpleasant. Swallowing cold things is akin to swallowing crushed glass, and if I wash my hands in cold water, touch a chilled metallic surface/handle, or grab a cold anything out of the refrigerator, it feels like what I imagine frostbite feels like, sharp, burning, and wrong. If a cold blast hits me in the face, it’s like being pierced by a million tiny needles. I wear gloves and socks most of the time, even inside.

Ralphie’s brother, Randy, from “A Christmas Story,” modeling Oxaliplatin/5-fu chemo week fashions for Winter 2015/2016. I look like this when I leave the house, and turn the heat up when inside my home to tropical temps. Everything’s nice and irie up in here.

By the time I’m leaving the clinic, I’ve developed a severe sensitivity to releasing saliva during the first 3-5 “chews” of anything. It hurts and I make faces, then it goes away. I know some real vain kings and queens who would pay for a weight loss regimen this effective. No joke. Next up comes the paralysis that comes and goes to the left side of my mouth. It’s bizarre and is probably reminiscent of the way people feel when they have a stroke. Occasionally, I experience dysphagia. What’s dysphagia, you ask?  It’s difficulty swallowing due to nerve endings in my throat being affected by the chemo. Dysphagia is alarming because it feels like you’re choking and can’t get food out of your throat, up or down. As a brilliant home health PT, I know a trick. Lower your chin, chew a ton, then slightly lift your chin to help the food go down. Best. Diet. Ever.

First day. I look a little shell-shocked. Haha! Was it the getting up early or having my port tapped the first time? Mystery.

Continuing on, somewhere in this 5 day period, I begin developing muscle spasms in my diaphragm and intercostal muscles. Mostly they are slow waves that lightly ripple through my left rib cage, but, the big BUT, there will be one or two that will bring me to my knees. Spasms of a magnificent intensity that halt me in my tracks for 20-30 long, tense seconds. I breathe in and out until they go away. Then I go on doing whatever, because they go away and I’m really happy about that. I’m also developing neuropathy in my fingers and toes. Neuropathy is when nerve endings are damaged, causing numbness, tingling, and pain, and is another side effect  exasperated by cold temps. I also have memory loss and a horrible time with word finding. For those of you who know me, zip it! This is definitely because of the chemo.

The chairs are comfy and the blankets are warm. Trying to look productive. Pfffft.

By Wednesday and Thursday, I will feel as though someone drained my battery to a little less than 50%. Everything becomes an effort. Getting up to walk to the bathroom, climbing the stairs up or down to my second story, leaving the house, making the bed, brushing my teeth. EFFORT. However, I will do Pilates twice this week and walk everyday. Friends will come over, I will clean a couple of drawers and continue to slowly organize my life. I will read, I will write, and I will be present. When I feel especially poorly, I will watch television with a dedication that will horrify most and impress a few.

Me, doing Pilates, the day after infusion clinic while still connected to my pump. What’s your excuse? Thank you, Pizzanista! (www.pizzanista.com) and Pi Movement (pimovement.ninja) for the workout gear.

I might binge watch television because the entire time, along with all these other side effects of chemotherapy, I will be fending off debilitating nausea. Nausea is prohibitive. If I’m nauseated I’m not moving or talking, returning text, opening the door, or getting off the couch. Life slows to a crawl, and the numbing waves of woe begin to set in. I have ways around nausea that don’t involve my anti-nausea meds. Anti-nausea meds suck. So, when the nausea is controlled, I can easily deal with all these other side effects.

My advice from Brokenrecordville? Control your nausea, whatever you do, figure it out. Drink lots and lots and lots of water! Flush your system, help the meds, be proactive in the process! Walk. Even if it’s just around the block, around your house, or around the kitchen island 10 times. I am begging you to move your body. This is counterintuitive but astoundingly helpful. Pump those meds through your system by stimulating the lymphatic system, and maintain some endurance and strength while you’re at it. Why not? It can’t hurt anything, although per usual, please consult with your medical oncologist before beginning an exercise program.

Santa came to visit. He really was a jolly man with candy and a real beard. Kids, don’t take candy from strangers, adults with cancer, why not? You’re already ingesting shocking amounts of poisonous substances. Live it up!

Being around people I love and enjoy is huge for me, and that is generally the case in all aspects of my life. Do whatever sparks joy in you. If it’s reading a good book, painting, going to movies, sitting in parks, please partake. Make sure you do those things. Maintain the beauty in life, because this is a tricky road to navigate. These good people also understand when I don’t leave the house for days on end and stare somewhat blankly at them through conversations. Muy importante. The mass majority of my symptoms will resolve. The neuropathy will go away, the fatigue will dissipate, and my memory remains a mystery, but in the meantime, this is the way I roll every other Monday through Wednesday, with 5 amazing days out of every 14 when I feel mostly spectacular. Woot woot!

Reading an article on hipster chocolate fraud in Brooklyn. Apparently even their beards were false! Whaaaaaattttt? And that’s the only article I ready in the NYT today, but they nailed it!

My companions so far:

The lovely Julianna who has taken me to chemo twice and is cheery and dedicated and so loving! She is often mistaken for my daughter (wish you could see my hair flip, nod and once again, pat pat on the back), and is happy to loan me her fiancee when she’s unavailable. I love her.

Sweet Amanda brought me and we had tacos Favored to the clinic. Laughter seems to be the common thread of my infusion days. AND she taught me to knit to help with the neuropathy. My scarf might not be beautiful, but it’s awfully pretty with all the love.

Beautiful Barbara brought me for Christmas Chemo! We had pain au chocolat and coffee for breakfast, Indian for lunch and laughed our way through an extra long day of chemo. We set intentions for the Winter Solstice and celebrated B’s birthday at Justine’s later that evening. Such a good day!

Of course my parents have taken me for all disconnects and for 1 chemo. They are incredibly patient with how loopy I am by Wednesday and don’t make too much fun of me. Thank you! Thank you! Thank you for a million kindnesses and a lot of understanding.