“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).

“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.”

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.

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.

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.

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.

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

 

 

 

 

 

 

 

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.

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.

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.

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.

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.

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.

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.

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.

 

 

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.

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.

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.