The Inside People

While this is set in the world of screenwriting, it’s a good tale for those of us who live in the world of Cancer… may we get outside.

Princess Scribe's Blog

1253478-great-american-pitchfest_large.jpg.300x207_q100.jpgI had the pleasure of once again attending the Great American Pitchfest this weekend, joining my favorite Dude, Zac Sanford, at the Suntaur table, taking pitches from screenwriters near and far. I look forward to this annual event, the time spent with Zac, and the writers we meet. Last year, I was forced to miss Pitch day, as my health simply wouldn’t allow it. And so, the few hours spent Sunday was a little victory of sorts, a way of giving cancer the finger, and telling the little fucker I’m still here, and, despite your silent presence, I plan to outlive you. So there.

It would be most appropriate, of course, to follow the above with a post of mutterings and musings about pitching, and, after this weekend, I can assure you that this long overdue conversation is coming. I think it is vital for writers to know what is…

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Coping with Uncertainty

kat-avatar-051013The independent film community is a tightly-knit global one, in which its members share their art – and their lives – via social networks. I was first introduced to Kat Caverly when I was filming my series “They Live Among Us.” Kat is one of those rare people, whose incandescence shines brightly through her Twitter feed. I knew immediately that we would become friends, and so, a few years later, when I received my diagnosis, Kat was one of the first people I turned to, for she had survived a diagnosis of Stage 3 breast cancer.

Kat has recently released her short film, “Coping With Uncertainty”, an inspirational piece, which records her journey from cancer patient to cancer survivor. Recently, we sat down for a couple of cups of virtual tea, and talked about her film, her journey, and life with the Big C. Enjoy!

A: When did you first find out that you had cancer?

K: The beginning of this chapter of my life started with a diagnosis of Stage IV breast cancer on July 22, 2013. This was also the beginning of me getting very lucky. I was scheduled for a PET CT the following week which proved it had not metastasized, so it was NOT Stage IV, which cannot be cured. Two months after I was diagnosed, I started the blog Effects on the Side. There, I archived my thoughts during treatments, mostly the chemo. I took a writing workshop through the 7 weeks of radiation, as a way to process all that I was going through.

A: What was your first thought, after being told?

K: As my surgeon gave me the news, “You’ve got cancer,” my first thought was how hard it must be to give anyone that news. I have a compassion towards, and admiration for, all of my doctors and nurses.

A: I am always humbled by your perspective; how you think of others first. And yet, that’s how I reacted when I was first diagnosed. Thinking of those around me, my doctor, my husband, my family and friends. I guess it was easier for me to think “Poor Don/Mom/Chris/etc” as opposed to think about what the diagnosis meant for me. Like you have said, we all learn to cope with uncertainty.

K: (nods) There is something about a cancer diagnosis which makes you jump back to the past in search for that elusive “what-if”. Luckily, I have wanted only one thing since I was three years old, and that is to get to be very, very old. The fact is, I’ve always dreaded the possibility of getting breast cancer, but there are some risk factors I just couldn’t change –  like being a woman. I realized after twenty years of yearly tests, mammograms do not prevent breast cancer.

A: I remember when I first discovered that you were engaged in this “battle.” I saw a Tweet of yours, and your profile picture had changed. You were bald. I thought, “Oh, shit, Kat’s dancing with the big C.”

K: Oh, shit, indeed!

A: So then, we talked about it, how you went public. What made you decide to take such a personal event, and go public with it?

K: Here’s an excerpt from my blog. It’s hard for me to read these words, written while chemo was raging through my veins, and radiation was being aimed at me every single day –

kat-caverly-fuck-cancer

One of Kat’s many Tweets on life with the Big C.

“Save the pity for this fucking cancer. There. I said it. It needed to be said upfront each and every time I told those near and dear to me that I had been diagnosed with cancer. This gave them permission to start cracking-wise, which was what I needed to hear right after they told me they were sorry to hear it.

My friends and family were quick to oblige, and I quickly filled my days after diagnosis with the sounds of my own laughter. I was hell-bent on putting some fun in this dysfunction. I had to start with not feeling sorry for myself.”

I also know that my positive point of view and lifestyle can’t cure cancer.

A: So, tell me about “Coping with Uncertainty.” How did this journey into filmmaking begin? What obstacles did you face and how did you deal with them?

K: When I started making daily self-portraits in August 2013, I thought I would do a time-lapse revealing my emotions through my face. Then, as my hair started coming out, (week four) I did 360º turn-arounds, imagining another time-lapse series showing me going bald, which you do see in the movie.

My major treatments were finished in March 2014, and then I started hormone starvation, since mine is a estrogen positive breast cancer. The hardest part of all of this was about to begin, and I thought it has just ended.

In April 2014, I began gathering all of the 4000+ photographs, and that process was daunting for me. I really did feel sorry for myself, and had to get distance from it all. In May 2014, in collaboration with Thomas Hudson Reeve – my husband, who is also a writer/filmmaker – I decided to shoot an interview with me talking about all of this. Dancing on Planet Cancer is not for sissies.

It was still too raw for me, and too personal. Tom helped me see that I could actually help others with my movie. It would take us another year to finish “Coping with Uncertainty.”

A: What was your worst moment during treatment/diagnosis? What was your best?

K: My worst moment? It was my first Day 5 of AC chemotherapy.. On Day 5 after each of this chemo-cocktail, the same thing would happen, but the first time I was scared. The uncertainty was the worse part in general, and by the time I got used to anything, I’d be off on a new chemo-cocktail… and another round of uncertainty.

So, it’s Day 5, and I knew I would be hit hard. Thinking was like through a dense-fog. My blood pressure dropped. I kept wondering if I should get help. I wasn’t worried enough to call my oncologist, or go to the hospital, because the thought of going outside was unbearable. However, the next day was a good day!

My husband is gone 5 out of 7 days, down in the Big City making the big TV shows. I am a lone wolf when it comes to fighting such battles, so I was fine being alone. Help was literally around the corner since I am within a mile of all of my doctors, hospitals, and treatment centers.

My best moment???! Hmmmm….

Oh and there was one!! It was after my first Taxol chemo-cocktail. They filled me up with dexamethasone and I was Flying High. I also wrote a blog piece about one of those great days.

A: Better living through chemistry. I’m a passionate advocate for compassionate care in regards to cancer patients and/or people living with progressive, terminal illnesses. It’s easier to get a gun than it is to get pain medications where I live.

K: Yikes.

A: Yikes, indeed. Okay, a couple more, and then we’ll take a look at your trailer.

K: *claps hands*

A: What do you want people who have just heard those life-changing words “You have cancer” to know?

K: What a great question! Okay. You’ve just heard those life-changing words “You have cancer.” I want you to know it is still ok to enjoy your life. It is still ok to laugh and smile, to love. It is ok to celebrate life and every precious moment of it.

A: Last, what would you say, if today you met your ten-year old self?

K: You do learn how to be happy in the face of life’s worse things happening to you.

***

Kat’s film, “Coping with Uncertainty”, is available for purchase on her website; below, is a trailer for this life-affirming project. I dare you to not become infected by Kat’s unique and joyous take on life:

“Coping with Uncertainty” from Kat Caverly on Vimeo.

Follow @KatCaverly on Twitter!

The Healing Power of Music

I started this blog, less as a place to rant, but more of a place to chronicle my journey into living with cancer, the things that I learn, not only about health, but about self, and, upon occasion, things that inspire me.

Music has always played an integral part of my life. While many use the television as grey noise, for me, the primary choice is music, usually classical. It soothes me and inspires me. A day of music and rain is, in my world, a most perfect day.

After going through radiation, and being left with the radiation induced panic attacks, I changed my method. Nightimes became very frightening times for me; I found myself alone, in my hospital bed, in the dark. And so, I changed my ways. I began to play the television in the background. I’d fall asleep to episodes of “The West Wing”; the voices of C.J. and Bartlett would pepper my dreams.

Last night, we settled down for a documentary on Netflix, the 2014 Sundance winner “Alive Inside – Music and Memory.” The film chronicles one man’s journey to outfit every Alzheimer’s patient and nursing home resident with their own iPod, filled with personalized music. We watched, tears in our eyes, as patients who had retreated into silence, and in some cases, an almost coma like condition, come to life as music reached them. The film is heartbreaking and inspiring to watch, and so, today, I offer it to you as a little gift.

Below is a brief segment from the film. And today – once again, music fills my house.

From the Annals of the Absurd – Cancer and Sympathy

UnknownFrom the first day that I embarked on this journey, I’ve kept a file called “Shit People Say.” It’s a collection of whimsical stories and comments that I’ve experienced and encountered when the everyday (and not so everyday) Joe and Jill are confronted with my condition.

Today’s entry has come as a result of my husband’s frantic attempts to refill my pain medication last weekend. I am on two kinds of pain medication – one, a long acting, extended release drug (Oxycontin, 80 mg) that I take 3 times per day; the other, a short release form (Dilaudid, 4mg) that I take 1 to 2 tablets from 4 up to 10 times per day, depending upon my level. I was at the high-end when I was going through my infusion treatments; my Auto-Immune system went haywire, and began to attack itself. The pain was literally enough to drive one insane. I was hospitalized once, and then, my pain management team landed on a solution to keep me out of hospital. It was rough, I spent most days sleeping or in a fog, and I was greatly dependent upon others to come over and administer my next dose, in order to keep the Kraken at bay. Thankfully, my infusions have been discontinued, and now, I’m on simple maintenance. That being said, I still need my medication on a regular basis, and we found ourselves without.

My husband drove to the hospital, where he picked up the Rx in triplicate – doctors are not permitted to call in a prescription or even fax it in, for such medications – and then began to drive from pharmacy to pharmacy, until he could find one that would fill my monthly dose. Our usual pharmacy was closed due to the holiday weekend, and so, he finally found himself at a CVS in WeHo. The pharmacist took a look at the prescription, and then, without an ounce of compassion, or even, an acceptable amount of self-editing asked “Is she terminal?”

My husband paused. He was tired, and now, he was pissed. “Gee,” he said. “I don’t know. She has myeloma, and she broke her neck. What do you think?”

The pharmacist flushed, walked away, and, silently, returned with the prescription.

***

Unknown-1The regulation of cancer patients in regard to pain management has resulted in a system of  the red-lettering, humiliation, and torture of those of us during our most vulnerable of times. It is easier to purchase a gun than it is to refill opioid medications in this state, and most likely, in others. A doctor must write out a prescription by hand, and in triplicate. The doctor is not permitted to call a pharmacy, or to fax in an order – even if the doctor is certified by the state as a Pain Management Practitioner. There is an exception for patients at end-of-life, or hospice care, but for the standard cancer patient, no dice. Even then, the pharmacist has the right to decide if s/he agrees with the doctor in regard to the treatment and management of the patient’s pain. The pharmacists at CVS are the absolute worst in regard to their treatment of cancer patients. They often not only refuse to fill prescriptions, they have verbally assaulted both me and my husband, inferring that I was “faking” or that my management team didn’t know what they were doing, and I’ve heard similar stories from others. They are rude and abusive; it’s humiliating, and I hate that I have to use our local CVS to purchase sundries, but I must because the alternative is a two-mile round trip walk, and there are days when I simply can’t make that happen.

Why all of this? Because the assumption is that every pain patient is an addict. They are saving us from ourselves.

I’d still like to know how one fakes having cancer. Do the labs just make up the numbers? Did I break my own neck out of some need of attention, or better, because I wanted drugs? Hmmm.

Unknown-2The clowns at the TSA has come up with a fast track method of screening for frequent travelers. One must fill out an application that is (hopefully) placed through several background checks. Once you receive your fast pass, gone are the days of standing line for screening, of wandering shoeless where lord knows what has been on the floor, and of delays at border crossings. This “fast pass” allows the holder to avoid the discomfort and inconvenience that most modern travelers complain about. It’s allowed because the person has been placed through a pre-screened process, and it is given to the applicant because the TSA assumes that because of the screening, the applicant is not a threat to national security, and will not hijack a plane or train, or plant a dirty bomb. Basically, it’s a measure of trust that this person will not commit an act which could, depending upon their method of terrorism, claim tens of thousands of lives.

bigbrotherAnd yet, the DEA keeps files on cancer patients – yes, I have a DEA file – and, ultimately, manages the cancer patient’s pain, by not permitting easy refills for a diagnosed cancer patient, and by permitting pharmacists to decline whomever they want. There is a built-in system of prejudice and isolation that leaves those of us dealing with an incurable but treatable illness living in the nightmare of intractable pain and public shaming. They force doctors to jump through incredible hoops when they try to treat our pain efficiently and compassionately, causing many doctors to become reticent to effectively treat their patients. Did I mention that even with my file, showing a history of pain management, the prescription written in triplicate, and all of the absurd laws fulfilled to the letter, that the pharmacist decided he would not fill my prescription until he spoke to my doctor on the phone, to guarantee that we weren’t trying to pull a fast one?

Unknown-3In our country, we have a system which permits a person who has the potential to destroy countless lives a fast track method to our possible annihilation; and yet, for a single person, who is suffering through the nightmare of cancer, the current system is to deny treatment, to prolong suffering, and to inflict endless pain-shaming upon a single person’s shoulders, said person being a danger only to themselves.

Is it me, or do you hear a calliope playing?

From the Annals of the Absurd – Insurance

If you’ve visited my blog recently, I’m certain that you have ascertained that I’ve been struggling with more than a bit of depression. That’s not uncommon given my circumstances; however, this journey of mine was never to be my tales of woe. Unfortunately, sometimes the dark side rules; pain has a pretty funny way of making life seem less worth than the bother, but these episodes are momentary lapses, an indulgent off-road adventure, where I find myself splattered in the mud of self-pity, and cackling with glee. Eventually, I tire of my escapade, pull over, gussy up a bit, and return to my original path.

You may or may not realize that I have a new oncologist; my adventures with my original one are a journal unto themselves, not to be missed, but for today’s sake, we will stick with the present. I’m very impressed with him; he is quite knowledgeable in his field, and is in the process of giving me a definitive answer in regard to the progression of my disease. I’ve another bone marrow biopsy on Thursday, but before the biopsy came the blood tests, and that’s where this tale begins.

I'm the Six Million Dollar Woman!

I’m the Six Million Dollar Woman!

Our first meeting consisted of going through a detailed history of my illness, the broken neck, the discovery that a lytic lesion had eaten away my C2, the discovery of monoclonal proteins in my blood, somewhat elevated light chain ratios, and myeloma dancing in my bone marrow. Since then, I’ve been through an intense surgery to repair my spine (see my bionic picture), an equally intense series of radiation treatments, and, of course, the dreaded infusions, which became the bane of my existence. The first thing my new doctor did was to eliminate the infusions for, as he explained, their efficacy was in question, and certainly did not present enough of a benefit to put me through the Auto-Immune Reactions my body had developed from them. If he had not been so intimidating, I would have thrown my arms around him and kissed him for that. He then ordered a new bone marrow biopsy, for, as he said, my bone marrow had been “behaving irresponsibly.” We wrapped up the meeting, and then he said, “On the way out, stop at the lab across the hall. Here’s some orders for blood-work.”

Always dutiful, I presented my veins – and my paperwork – to the Oschin Center vampires, and they got to work, draining 5-6 vials from my beleaguered body, and went on my happy way,

These blood tests are not cheap; this particular set runs close to three grand, and so, to be able to walk away after a relatively inexpensive co-pay, allows for such testing to be done.

Or, I should say, used to allow.

Anne Blood workYesterday, I received a notice that the authorization – and the payment – for the blood-work had been declined. The reason? As the letter says “Your records show you have cancer.”

Well, slap me upside the head and call me Baby Jane. Apparently, because I have a diagnosis, no such blood tests can be ordered. I suppose words like “progression of disease” don’t come to play in such situations.

Armed with anger and Ativan, I called the insurance rep, in order to right this wrong, and that’s when the carousel of medical insurance began to spin wildly out of control; the sound of Calliope music still rings in my ears. You see, I should not have gone to the labs as directed; I should have gone to Quest Diagnostics, which have some sort of agreement with my hospital, and my medical group. Because, according to my records, I have cancer. Forget that the doctor requested that I go to the lab down the hall (we were walked there by his nurse); forget that the orders were for the lab in the Oschin Cancer Center. No. Apparently, they prefer that I go to Quest, and I should have psychically known this, as I’ve been sent to Quest before for other tests. The fact that I have also had blood tests run at Oschin mattered not, for, with this particular round of tests, the protocol was to send me to Quest.

maxresdefaultAs I explained to the robotic person on the other end of the line, even if I had achieved a Vulcan mind-meld with my new onco, I would not be able to retrieve this information, for he didn’t even know it.

And so, my file sits in the Accounts Due stack, with a V.O.C. (Voice of Customer) complaint noted, for the next genius to review, decline, and send me a declination letter, noting that I have cancer.

Lord knows how they’ll react when they learn I have “irresponsible” bone marrow.

Yee-haw. Let the games begin.

Coming Soon: Shit People Say, or How Not to Talk to a Person With Cancer.

‘maste, y’all.

The Human Condition

It’s 2 o’clock now, and I’ve just managed to drag myself out from the shower – not because I’ve been pulling production all-nighters, but because I’ve been in the depths of a different kind of production, the title of which is called Cancer.

I have not written for months because I haven’t been able to; in late spring, I began to experience a terrible auto immune response to the monthly infusion treatments, designed to rid my body of any baby myeloma cells that the radiation had not managed to kill. The reactions would occur, like clockwork, on day 3 post treatment, and would continue on, building to a horrific crescendo, and then, slowly, too slowly, begin to taper off, until I finally felt whole. I was having about 7 to 10 livable days per month. My quality of life was anything but. I was wrapped in a shroud of misery.

To say that I was overjoyed when I was taken off of the therapy would be an understatement; I practically skipped out of the doctor’s office, or rather, I attempted to, as that function hasn’t quite returned since the surgery. My brain and my CNS are still trying to figure this moving/living thing out. It takes time, I’m told.

So, i was very excited to be able to dive into life again, and work. All of this came to a crashing halt this week, as another lesion has been discovered, this one in my tissues, and I find myself looking into a tunnel of doctor appointments, biopsies, surgeries, and, if the reports come back malignant, some form of treatment. Reality reached its tipping point yesterday when, after discussions with my primary physician and my husband, I had to step out of a feature assignment. I felt it would be unethical for me to continue on, for, I’d be losing more than a full week over the next few to this thing. The move broke my heart; I’m still picking up the pieces today, as I try to figure out this life. Cancer – 4; Anne – 0.

***

A lot of my feelings of unrest began to surface a couple of weeks ago, when I was meeting with a new doctor. She was looking through my reports, my x-rays, getting to know me third person, as I was being introduced via the maladies that brought me to her. She closed the book, and leaned back in her chair, giving me a long look. “You know,” she said, “if you had walked in here without all of this” – referencing my file – “I would not have guessed for one second that you were going through any of this. Your hair’s done, you look healthy and happy…. most of the patients at your level look just as miserable as they feel. You look like one of my girlfriends, just coming over for a girl’s day out.”

I get a lot of that. I can’t believe you’re sick! has become a sort of repetitive chorus I hear, usually followed by You’re so brave or You’re my hero, and, while I appreciate the kindness of the words, please understand that nothing could be further from the truth. I am not a hero. Nor am I brave. I don’t push myself to make dinner, go on my daily walks or my weekend escapes because I am brave – I do it because I am afraid. It’s a sort of camouflage, I suppose, for if I maintain the illusion of health, perhaps Cancer will leave me alone. Maybe Cancer will decide that I am too strong to be taken on, and move away from me, silent, like a great predator in the dark, in search of weaker and easier prey. Advantage: Anne

***

There’s a sort of bias towards cancer patients, often perpetuated by the patients themselves, and the bias is Hair. The typical Hollywood version of the Person With Cancer is that of someone pale, weak… and bald. Many treatments cause hair loss; however, today, there are many treatments which do not. They still have horrible side effects; they still seek to weaken and destroy you as they seek and destroy the cancer. I’ve had radiation, and I’ve had maintenance therapy, neither of which have cost me my locks, but they have cost me a great deal of healing of my shattered vertebrae, and implantation of the fusion device. I was told several months ago that I could not join a particular treatment group because, even though I was left writhing in pain, and with all the fears, frustrations, and sorrows that any human would have, as the group leader put it: “You still have your hair.”

***

ro11-the-kiss-rodin-bronze-finish-largeYou can’t judge a book by it’s cover, as the saying goes, and the faces of cancer are as varied and endless as the people touched by this disease. New treatments and new diagnoses emerge each day; I’ve recently been told that my own my be re-classified; time – and bone marrow – will tell. For those of us who look or behave like we just came in from the tennis court, we are not heroes, we are human, and it is our humanity that I hope will shine through and identify us, along with the frailties and foibles that come with the human condition.

I hope.

Perspective

Courtesy Zen Treasure Maps

Courtesy Zen Treasure Maps

The accidental journey is never an easy one. Your life becomes a sort of map, the end point of which is the pirate’s treasure, the buried hoard titled health. The problem is that this map is not an easy one to read; there are branches and forks along the way. False leads and dead ends pepper the path; and yet, you push on, towards your goal, with steely determination. This perseverance does not come without cost, for it demands great focus… and the fallout of such focus can be a sort of self-absorption; you see the world through the eyes of cancer. Everything seen, touched, heard, echoes with the whispers of “me.” A friend is pregnant – will I live to see the baby grow? A nephew graduates – will I see him launch his new life, new loves, even children? What will happen to my mother, my brother, my family? Aunts, uncles, cousins, friends… will I bear witness to their lives? Will I grow old with my husband? Will my illness take its toll upon him? And.. what about me?

I chose the road called Modern Medical Treatment. In some ways, it’s still an unpaved way, filled with potholes and littered with debris. My treatments have not been easy; my body doesn’t seem to understand that we’re trying to save it, not kill it. My attempts to reassure and comfort my self have become a clusterfuck of missed communications; everything has been lost in translation and so, with my last treatment, my body waged war. Against the treatment, and against me. I went into a massive auto-immune response. I was punished for allowing such chemical insults and injuries to be injected into my body. I was forced to pull over, and wait out the storm, courtesy of Cedars-Sinai. I was finally released from my imprisonment room on Wednesday, and am now recovering at home. Everything has slowed down; even the writing of this blog takes a Herculean effort, for my within my joints still linger the last vestiges of this battle.

And this is, I hear, not even the war.

During the days of confinement, I drifted in and out of reality. Though the fog of pain and medication obscured my journey, I still remember much of what happened… and I don’t. I was there, and I wasn’t… and yet, there were moments of great clarity, when something would sound like a foghorn, breaking through the dark veil, giving me something to hold onto, an anchor of reality, a moment of perspective.

For me, this anchor was five words – “Code Blue: Labor and Delivery.”

The ward that I would have normally been housed in is under partial reconstruction, and so, I was placed in an overflow unit, off of Labor and Delivery, next to NICU. Even when my door was closed, the communication center was quite audible, which allowed me to hear and process those five little words.

Code Blue. Labor and Delivery. Bitterly reminiscent of the famed flash fiction novel, often attributed to Hemingway: “For Sale: Baby Shoes. Never Worn.”

When faced with tough times, people say “At least I have my health.” I cannot say that, but I can say at least I have my life, and all I could think about then – and think about now – is that somewhere, on the third floor, was a family’s worst nightmare come true. Either a new mother or a newborn were fighting for their lives. Or worse, both.

Somehow, that realization lingered in my room, and finally, the fog cleared, just a little, as those little words gave me the beam of perspective to cling to, and allowed me the strength to drag my battered body into the shower Wednesday morning. I sat in the chair as the warm water ran in rivulets over me, washing away the pain and tears.

I have my life. I have my family, and friends.

I have perspective.