Tag: chemotherapy

Never, never, never give up.*

Christmas 2017

In the spirit of enjoying my newly found power of living in the now, and not over thinking my tasks or decisions too much, I find a listing worthy of our time and  instead of sitting home asking what to do and not doing much together, we decide it may be fun to head out to see a film. We drop our imaginary swords after a weekend of tension and melancholy leading up to today, Christmas Day.  After purchasing our tickets online, we slipped out of the garage with plenty of time to spare and without the usual tension causing any arguments. So without a hitch, we went out with a playful, familiar affection for one another.

I didn’t allow myself to over think what needed doing, and it all got done. I found myself grateful and comfortable as we drove the quiet holiday road, listening to Mozart. I am more home focused  these days as my current course of chemotherapy has caused my blood cell counts to decline. Compounding this, The C suffers from depression thats holds him locked in our house nearly  every day, sleeping more than he’s awake.

But tonight once he finished dressing, he smelled clean and crisp and looked really handsome and I told him so.  With patience he waited for me downstairs while I took a deliciously steamy hot shower, one of life’s little delicacies and a major privilege of living in a first world country. I dressed up a little bit for him, but for myself mostly.  As someone with gender altering breast cancer, I recommend it highly. If you don’t really feel like getting out into the public, dressing up and putting on a little makeup can help your inside rise to the occasion outside.  It doesn’t hurt, whether you have hair or not, gained or lost weight, became flat chested or had reconstruction, try it. I find needed confidence and The C says, babe, you look really hot. Grin. Blush. He playfully, but gently so as not to mar my transluscent skin, pinches my ass and impish grins and says, what? as I squeal “oh, don’t!” And we get moving to the film.

The Darkest Hour starring Gary Oldman, who by the way OWNED the role of Churchill, engaged us from beginning to closing credits. Big new bonus feature, there’s now reserved seating recliners to kick back and put your feet up in, leather ones, too.  My inner marketeer assumes this phenomenon arose from a study about what makes people stay home instead of going to the theater to see a film. My conjecture: the study found people dreaded mortgage size snack bills and horribly unsanitary cloth-covered, ass numbing seating, originally designed for the Spanish Inquisition’s torture chambers. I can just see the PowerPoint presentation designed to sell the plush, button operated gluteus maxims warming cuddle machines to the theater chains’ operations management. (PowerPoint brain IS akin to chemo brain. I suffered both and the similarities are uncanny.)

Anyway,  The Darkest Hour covers Winston Churchill’s first month to his wartime appointed Prime Ministership governing Great Britain. He’s refused to lead his nation into a seriously precarious position of becoming like France in an act tantamount to surrender. Indeed, he would have accepted this fate had he allowed former PM and war cabinet member Chamberlain’s cowardly and first choice for the prime ministership, Lord Havilland to drive a country into a state that neither man was strong enough to lead. It turns out Chamberlain had only months to live having been diagnosed with cancer.  Me. Havilland drove his agenda as well as the King’s and persuaded Churchill to allow a seat at a table for one, at the so-called peace treaty with Hitler via Mussolini. History would be changed forever, and for not only Great Britain, but for all of Europe. There’s a surprise mini arc in the action that I’ll not give away but you’ll know why if you see the film.

Prime Minister Mr. Churchill, ravaged by lack of sleep and terrible indecision, finds himself unable to conjure the words for a speech he must deliver to the House of Commons regarding the decision to fight or to act with cowardice and surrender.  In an impulsive move, he leaves his chauffeured car running into the station and takes a train, something he’s never done, to Westminster and goes, so to speak underground. There he finds strength through listening to people’s emotional cries of “victory!” in the train car. Men and women who rightly are stunned by the presence of the PM and who represent a cross section of his constituency. Churchill initially went underground looking for a match to light his cigar, but emerged into the rainy day not only with the light for his oral fixation secured but enlightenment for his immanent oration. He finds answers he needs in that moment without over thinking his decision, in the hearts and minds of his beloved nation’s people.

I won’t spoil the ending, but we all know how the US for five long years allowed the punishing of our strongest world ally. Roosevelt got the blinders off very late in the war. Yet Churchill gave many European people hope for a future not ruled by tyrants. Without the navy but with his inspiration his ability to launch an entire force of civilian boats, to rescue 300,000 troops – the entire British military force stranded on the coast of France – waiting for help from across the English Channel.  Those boats were not captained by soldiers, but by regular people brought together, finding strength and bravery from deep inside their hearts and souls. Such bravery exhibited on so many levels boggles the mind and I need more time to digest the strength employed by everyone involved from the King of England, to Churchill, to his wife, to his supporters, and to the boats men living up above the White Cliffs of Dover.

I get chills thinking of the scene. It’s not a film full of CGI or big blasts or comic superheroes or special effects. It’s all in a short time with small spaces containing big exhibits of strength and bravery. Churchill knew that bravery comes not only from a wellspring inside, but from the community with whom we share a common connection. In his case the whole of Britain, in my case a small subset of the blogosphere. 

I know I represent a small subset who communicate via blogs. Here I find the brave and the vulnerable and in turn, this frees me to shed my own fears.  When someone stumbles into a post or poem of mine, and finds my “confessions” supportive,  the support I need comes easily.

At the beginning of this circuitous confessional, I found strong brave ties to a man I never knew. My relatives emigrated to the United States via Ellis Island in New York.  I am here because my great grandparents had the forethought to safely move our families out of the USSR, away from the tyranny that would slaughter Jews by the hundreds of thousands. Because of their courage I never will know  the atrocities of a true bloody ground fought war on a grand scale or the ensuing post traumatic stress disorder of an entire nation.

But we all fight our own wars don’t we?

I feel like my body is a country, my cancer, Stalin and  Hitler (Shitler?), the ground troops like my immune system, and my spirit like Churchill himself. Never, never, never give up. Victory is the only option, cried Churchill to the House of Commons that afternoon. From that scene on a wide screen was another brave heart who imbued in my spirit the strength of the lion himself long gone to find the One universal truth. He showed us the wisdom to listen, not just orate beautiful monologues that drown out the strength of other men and women, be they big public figures or new mothers with babies or blue-collar bricklayers from London.

Or even the small voice of a blogger in Silicon Valley, echoing words into the great web of the unknown. Too much drama? Nah, #fuckcancer.

#Chemotherapy and The #Customer Experience: #CVS, #Pfizer, and the danger of #outsourcing without educating agents

The scene from the movie, “The Jerk,” with Steve Martin, in which he becomes “somebody” because he finds his name, finds himself, in the local phone book. For those readers too young to have experienced this simple pleasure, you probably haven’t a clue what a #2 pencil and a cassette tape have to do with one another, either. “Hey, Ilene, what the fuck does phone book, “The Jerk,” cassette tapes, and a pencil have to do with cancer?” you’re asking? Well, gather round kids, grab a s’more, and I’ll tell ya. Not a goddamed thing. But neither should outsourcing and chemotherapy have anything to do with a patient who is speaking to a foreign call center with an agent without training to speak with stage 4 cancer patients, either.

Should FEDEX and UPS both of which delivered separate packages, have required a signiture from my partner or I as the special victims unit of CVS Carremark located in India? By the way, both packages contained VOLUMOUS amounts of Phizer literature. I used their web site irrespectively, even if the loads of junk looking mail in both boxes were important.

I am not a happy customer and my experience with this chain of events was on a scale of 1 to 5 a negative 2. The stuff could have sat in the sun on my front stoop all day rendering it useless had we not been home, seeing as the packages arrived one day early. Indeed no signiture was requested for my Ibrance chemotherapy . While online shopping for the holidays hits an all time record this year, so do the numbers of packages stolen from porches all across the United States. An abhorrent disregard for those of us who face awful diseases combined with theivery creates little dollar signs in the pupils of the eyes of would-be gift grifters. Like Richie Rich of comic book infamy, the spoiled rotten Peter Pan with dollar sign eyes, wearing Angus Young’s schoolboy stage outfit (sigh…the lead guitar player and co-founder of metal band AC/DC. A band named for the two types of commercial electrical currents that were the talk of the investment and scientific communities around 1900 and the fight between whether AC – Nicola Tesla, or DC – Thomas Edison, would prevail. AC won due to Tesla’s selfless power to the people efforts. Not AC/DC the slang term for bisexuality, although I am in huge support of anything anyone wants to do or try or be as long they consensually do it while not hurting anyone or anything.)

Okay, back now. Where was I going…

Right! CVS called to schedule the delivery of my first 21-day supply of Ibrance. I spoke to a nice enough woman who then asked that I hold while she was going to hand me off to someone who would get my information. Excuse me?

I was transferred to a man in an India-based call center who CLEARLY had no idea what the fuck Ibrance was for, since he was WAY TOO CHEERFUL and kept asking me how lovely my day was going and how great was I doing today!?! And he was VERY INSISTANT that me or my partner be at home THURSDAY, not WEDNESDAY, when Ibrance and a second unknown package containing oadnestron, a prescription anti vomit pill apparently my cool and yet sweet and very smart oncologist prescribed, would arrive.

So now the contact center has his infornation and mine stored neatly in a database to ANNOY US BOTH at some later date. Bad job, CVS, very bad customer experience indeed. Get your shit together or give Phizer’s the chance to outsource its fulfillment and support business for cancer medications to a company that will TRAIN ITS AGENTS on their customer’s needs. Yes, I did receive my Ibrance, and after reading enough about side effects, how to avoid them, and whatever else Phizer’s WEBSITE had to offer, here I go. Wish me good luck, good health, but please do not for the love of things great and small ask me how great my day is going.

I might puke on your shoes 🖖🏼

Cantcer

I can’t sir. I am not prone tonight to eat heaving and
Sounding out sloppy syllabic English.
Sisyphus gave blood I heard yesterday
Helping out our cause at the five and dime.
When outnumbered run faster, he remarked
Wiping his brow and tossing aside a bead from his neck.

Colors streaking and bleeding while
Ten Red Crossing Guards walked down hill
To deliver us to a corner. Each and every cell
Even at the  coroners. Then cohorts we went ringing
All their bells dying to laugh at elderly crooks.
Well, dear, didn’t we?
Of Main, 1st, Acme, Arapaho.
Why do you even know – tell me –
What neighborhood streets fired off,
Sizzled by before the funerals
Our ages ranged then arranged from
Dead red four two beats and too, too orange ade.
Sleepless? Well, sleep less.

Circadian arcane rhythms in the nacht muzhik*
Dreamless drum beat Heartland 3-1. Who cares
Anyway, tonight its core cooled just enough
Down to the touch networked our fingers enraptured
Engraved in graves for the book of the year  of the  dead
Picture us happy with Sisyphus’ Stoney strain
Upwards, shooting from frozen dreams
Bodies consumed by frequencies
And waves of electronic singing 180 degree miles away.
Off handedly I followed the paths of railway miles yet
So far only the shofar sings in the deserted diner.
I traded a philosopher’s stone for water sieved
Through the mazes etched in the lime of aquifer stones.
100 year contract for signing away, singing and astray
Your dearest routes and longest Rights of way.

*a Russian peasant

Scientific Memorandum

 

My darkest secrets erased in chemical warfare –
Silently, quickly digging out memories hidden in the sand.
Diving in and floating farther away then lifting my body
Out of pools, my limbs give out to lonely laps, feet
Press and push against black markers, right I left
Methodically crumbs in lines, then I dive
Swimming back into the shallows again.
Water stained and stirred the stale dusky corridor
After staring the wall boring holes with my own eyes
I will the clock foreword.
Teasing me with a deathly slow sweep around the halls
Long ago, returning shaded only by incarnadine shreds.

The robe untied, threads of my blue duster frayed
Standing before you pleading and cold
Wrap my shrinking bones in lace and tie
With twine enough knots to keep me here
By a line extension between then and when
The thoughts of you erased from blackboards
Redrawn with shaky hands grabbing at dropped
Words scattered randomly about the class.
Rooms take care of no one.
Then attempting a stroke with one left hand
Right holding a brush coloring, hearing independently
Someone’s strayed thoughts.
Metal rusted traps close, tripping some switch,
Hammering, nails hold tight for a short time.
The bell proudly announces the end
Yet so startled I miss the window again.
Seeing all I cannot sense and here my lingering
Memory stays behind and I am released
Waving goodbye my hands, gloveless and dry.

The Oncological Menu at the end of the Metastatic Universe

It just dawned on me as I was driving home, for expertise and advice we choose those people with whom who we agree, and more importantly, who agree with our way of thinking to be around us. No matter the circumstance: hiring staff; new friends; the closer of our family members; electing the president; even professional contractors and our mechanic. As human beings our fight or flight instincts can override our critical, logical thinking as a relationship becomes more intimate over time. We might find ourselves arguing and we may even decide to no longer see a friend due to irreconcilable differences of philosophies.

Simply stated: we don’t become friends with people we don’t see eye to eye with.

So why do we remain under the care of an oncologist with whom we disagree on treatment or we cannot communicate well?  This person is the primary decision maker regarding the major decisions and details of how we can fight with the dread disease. They should at the very least talk to us and answer our questions in an understandable way. I mean, if we’re good patients and lead decision maker for our oncology team, and even go so far as to help in selecting solutions as we go along our journeys.  Hell – they themselves wouldn’t have jobs without us, their patients.

So how can we define our role in our own care?  Isn’t it a little like we got parachuted like a soldier out of a plane onto a battlefield? A good patient navigates the terrain for themselves first and foremost. They don’t wait to get told what to do and they don’t accept blindly what’s doled out to them. When a soldier hits the ground hard, they release the parachute and get a view of where they landed and do their best to follow orders but that only goes so far. They have to protect themselves by the very nature of what they’re trying to accomplish.

A good patient will bring their oncologist information they’d would not normally have acces to. If you look at a time limit or a time that is spent with a physician – any physician like an oncologist, it’s just a sliver of time…just a small snippet of someone’s overall life. There’s not a way of seeing the whole picture in their dealings with the patient and they’re certainly not there on a day-to-day basis monitoring everything that’s going on with their patients.

It’s difficult for me to understand how, with so little time spent and only tests results to go by, they can make life or death decisions. You wouldn’t let your mother buy you shoes without your input; why would you let your oncologist treat you with things like chemotherapy and radiation therapy and other therapies without your input?If your mother buys you brown shoes and you prefer black it’s your fault for not telling her you wanted black shoes in first place. She can apologize and take the shoes back. (Although you probably believes she should know your tastes.)

Your oncologist cannot force you into subjecting yourself to chemotherapy. She can’t make you submit to radiation therapy, which like chemo, might lead to more cancer. You have choices but you cannot have a say if you don’t speak up about your preferences. He can’t order an ultrasound rather than a mammogram if you didn’t tell the him that you have very dense breast tissue and it would do more harm from radiation than good from a clear picture.

I am strange case apparently. I just seem to be responding well to treatments that many others haven’t responded well under. And I told my surgical oncologist today why don’t we just pretend that I’m stage IIIB instead of the stage IV? If I were stage IIIB you know I’d be getting metastatic sometime in the near term, right?  Because I’m metastatic, I don’t get a menu of options such as lumpectomy, mastectomy, and so forth because it’s just not in the restaurants in the at the end of the stage IV universe.
There is a tumor board that meets each Friday and  discuss my case as well as many others.  Before I even met with my surgeon he knew to expect my questions, he had heard of my annoyingly legendary knowledge base, he expected me to stand up for myself and ask a lot of questions if I didn’t understand what was going on. I chose to have the lumpectomy. My surgeon knows me well enough now. And he knew if he couldn’t get clean margins in my originating tumor he would push for me to have a mastectomy. I had my lumpectomy two weeks ago.

In my follow up appointment last week he looked at me and knew the answer before he even asked the question – I would say yup let’s go ahead and cut it. He said he said well I’m going to see the oncology board Friday I’ll speak to your oncologist as well as your other doctors and we will all decide. He said the first thing I’m going to do is make you an appointment with the plastic surgeon. We don’t want me walking around with just one boob really leaning into the doubt and says what are you curled call a girl with one boob? Ilene.

But guess what? No mastectomy needed. I can stand tall and straight and sit here and tell you to speak up and ask for what you want. Find the right team to help – ones who will work on YOUR side, not only by the books. The books change all the time and sometimes because a patient asked for something different than the set in stone procedural possibilities.

And be happy this holiday season. Do not forget your nurses and your team and thank them. You’re reading this and they’re glad you’re here.

My Funny Port-a-cath

Today is my least favorite day of the month. It’s subcutaneous injection day  at the chemo infusion center. If you look at the photos of my face and upper chest, the big bandage is over my “port-a-cath,” which is used for my blood draw,  sometimes. Mainly this is an expensive tap into my body, which the nurses flush monthly with heparin to keep it free of clogs and of any infections. That port, which cost over $47,000, was surgically installed in the hospital in March of 2015 about 3.2 milliseconds after they suspected I had cancer. Its never been used for anything but the occasional blood draws. And not all nurses are trained to use it. You can tell me cancer isn’t a successful business model, and I will sell you a bridge that connects Brooklyn to Manhattan.

“Through a port (sometimes called by brand names such as Port-a-cath or Mediport) inserted in your chest during a short outpatient surgery. A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.” From breast cancer.org http://www.breastcancer.org/treatment/chemotherapy/process/how

Mostly, It Looks as though I have a plug used for charging an electric car. Just call me Nicole Tesla. It’s my personal anachronistic device or my PAD. Funny story – While getting a quick car wash a few months back, the gothic teen who was on cashier duty that day asked me if it were a new kind of under skin piercing. I told her what it was and she said, “wow cool!”  I had to laugh instead of becoming indignant. I said, well not really, and I hope you never need to have one installed but you can use me to charge your Prius. To whit she asked, “really?” And with that, I said absolutely, wished her a good evening and reminded her to get a mammogram.

So I get three types of injections today:

Faslodex – two HUGE viscous injections given in tandem by two nurses  into my upper gluteus maximii. It takes 30-40 seconds to get these suckers into my body

XGeva -subcutaneous into my abdomen

Zolodex – subcutaneous into my abdomen

Yes they hurt. A lot. But I’m a good patient and the nurses in the infusion center are angels in human form. Bless their love and compassion.