Maybe I’m Amazed (you’re still alive)

Borrowed time:
(To)live on borrowed time
to continue living after a point at which you might easily have died:
Since his cancer was diagnosed, he feels as if he’s living on borrowed time.
to continue to exist longer than expected:
It is unlikely that serious decisions will be made by a CEO living on borrowed time.

Definition of “borrowed time” Cambridge Dictionary Online

The value of living on borrowed time bears an interest rate that’s unpredictable and unpayable. Apparently last December, my body had an amount of cancer physically insurmountable by standard oncological metrics. My disease probably should have killed me by now. How do I find a find a way to absorb such potentially life altering information? I’m unsure how to feel about it, since my recent scans showed that 26 weeks of Taxol had gotten rid of my tumors, and my bones revealed not cancer but the mesh-like scars of healing?

Since last week a cloud of oxymoronic amazement and fear hung low and put a bit of a fog over my generally happy convivial personality. Introspectively and quietly I digested the news my doctor delivered on July 1st. He didn’t expect me to make it to sit in his exam room through much of this year.

As I quickly scanned my mind for clues to his unrealized prognosis, I could only recall a few subtle cues. He became more empathetic generally and more concerned with my stressors at home. He’d say “bless you, Ilene, you’re a very strong woman.” He’d force smiles sometimes. I thought he’d been overwork and just tired.

This week a very competent nurse practioner took my vitals and we discussed my health in general, my increased neuropathy, my overall issues with pain from fulvestrant, and how I’m tolerating Ibrance and fulvestrant combined treatment. If you’re not familiar with Ibrance, it’s a targeted therapy used to treat metastatic breast cancer in patients who are hormone receptor positive by going after CDK 4/6 receptors that basically stimulate the growth of malignant cells especially in metastatic breast cancer. In studies the drugs that are chemotherapy, although taken in a pill form at home has shown an extension of time without new cancer growth and a halt of current cancer growths by about two years. In metastatic terms we like two year life extensions.

However the drug still costs $18,000 per month. I lost my Ibrance after the second dose spilling 26 capsules down the toilet. Yet here I am alive and with my disease stable and poof like that once again Ibrance gone. I cried from frustration and worried for my life again. But the nurse practitioner put my mind at rest and called Stanford’s pharmacy where I am now getting my at home bottles of chemotherapy from, and they procured a full emergency prescription through my new Medicare part D insurance company Blue Shield. Now, all is right in the world and with little stress on my end. The very thought of an agency going to bat on my behalf gives me hope that there are people who understand that stress kills cancer patients by infusing the body with cortisol, a cancer cell’s favorite desert. Now I am back on the medication. Borrowed time indeed.

PET Me.

During the same visit my oncologist came in to see me. He revealed that he didn’t think I’d make it through March of this year. He said, ”keep continuing to amaze me.” I, his miracle kid, amazed him? The clues of his grave and real concerns about my mortality started before the commencement of my appointments. He projected and telegraphed this through his change in facial expression, with the bounce in his step and via the quickness of his pace when entering the exam room. He looked at me quizzically and it seemed to me quixotically in the fanciful way one might peer into a lions den and hope the big cats weren’t hungry.

Prior to May’s PET and June’s CT scans he quietly would sneak up on me with his lips pursed and brow furrowed. “How we doin’, ” he asked with hesitation. ”Great!” I’d exclaim. And given the circumstances it was true. My white blood cells and liver function both responded by remaining stable even with Taxol for 26 straight weeks.

Yet there’s another twist to my life extension and projected expectancy. If you’ve read my earlier posts from December of 2018 regarding my hospitalization it was due to a complete clusterfuck by the Medicare part D insurer Silverscript, Pfizer, a nurse practitioner at Stanford Cancer Center, and the problem of the drug costing so much money that no one without insurance except the hyper rich can afford it.

It was due to a fax that the Stanford nurse practitioner never sent to Pfizer for a three month hardship supply because my insurance was dropped by Silverscript and the CVS Specialty pharmacy (both owned by CVS talk about the Fox guarding the henhouse!). I went four months without treatment and landed in the hospital for over a week until I went poop. And as all of you who have cancer of any kind know, your digestion is of utmost importance to your oncology team! Pass gas and you’ll pass the get out of the hospital test. Passing bowel movements is even better.

Good Times, Bed Times

Today was a bed day. Never got up once. I did bathe and fell asleep in the tub, but I needed to rest my body in the transition from one poison to another and from the psychological internal melodrama of finding out I should be dead. I’m glad to be here writing this post at the four year and four month time stamp since diagnosis. I’m pushing hard for year number five, and here’s three things I’ve learned through this waking nightmare called metastatic cancer:

  1. Meditate. The mind truly is connected to the body and I know along with everything else I do this is mission critical as much as keeping stress to a minimum.

  2. Cancer is about money and metastatic cancer patients are loose slot machines that pay out consistently like the ones near the entrance to a Vegas casino to lure people inside. Follow the money if you need something like medication.

  3. Trust your instincts and listen to your body. For instance right now I know my ascites is acting up and I’m going to push for a draining periocentesis since sleeping morning to morning is one way my body tells me to get a move on with the procedure.

And until my next post, be well, have fun, and follow your heart. Sometimes following only your head can send you down the wrong path even with the right logic. If there’s no path in to put your left foot on, just feel free and your right foot will land on a cobblestone and off you’ll go in a new direction.

💜

Breast Cancer Action Think Before You Pink Toolkit

As I look at the many messages portrayed about breast cancer, one might get the wrong impression. The impression that early detection prevents secondary breast cancer. The impression that if one dies from breast cancer they must have done something wrong or or have not done something right. It’s a message that pink is the color of health – the color of support, the color of good women who survived doing all the best treatments. The color of white women. The color of disease free women. The color of great corporate citizenship. I’m certain that there’s individuals whose hearts in the right place, but the companies for which they work interests lie in only one thing: shareholder value, read profits.

Profiteering on the backs of the suffering makes me wince. I’ve been a CEO. I know the impact of impressions in the public eye and their bearing on profits. This primer provides you with the necessary information to help educate and actionable things you can do to help uncover the myths surrounding metastatic breast cancer. We don’t ever stop treatments, the treatments fail us and we don’t survive, we die. We are not counted until then, and the number of us is a mere estimate that hovered around 160-170,000 every year with 40,000 new cases and we die every day.

The disbelief in our illness because we look too good to be so sick creates another paradox. I was told this evening I could work and plenty of people with cancer work. Yet if a job were available in Silicon Valley for a woman over 50 with metastatic cancer that would make her an employee who needs more than 50 sick days a year and late arrivals and early departures in a cut throat traffic heavy ugly, stress inducing environment I’d like to imagine that it would be easy and if it were I’d be able to make enough money to both survive and to pay the massive health bills and massive loss of wages for going to an office with flickering lights, noise, electromagnetism, and so on? You might think it was this very environment that accelerated my disease in the first place.

Call me a pessimist or a cynic, but 28 years of professional experience got me nowhere once I reached 47. Many women struggle with finding work that pays what they’re worth. I feel like pink washing is sort of like that. The token woman here or there who is able to hang on that long and then a company can take its due credit from her actively working for them for less than she’s worth. In this case, it’s her life. My life.

So click the link and download the documents available to you. They’re worth reading and may just move you to act on your indignation.

bcaction.org/site-content/uploads/2010/11/2012-Think-Before-You-Pink-Toolkit.pdf

And, cancer really, really sucks. I’m clearly not feeling hopeful today. But there’s always tomorrow…or not.

Metastatically “Normal”: new, used or unrealistic?

On the precipice of my fifth year of living with, not dying from metastatic cancer, I regard my life as a lucky one. No crazed busses have hit me, no falling airplane debris bonked me on the head, no Acme holes swallowed me up (a la Wile E. Coyote trying to capture the turbocharged Road Runner – meep meep!), and I’ve not been engulfed by any sink holes for that matter. But I no longer live in Florida, so I’m safe from stranger crimes for now. (For a great laugh go to your country’s YouTube website or app and type in the search bar “a Florida man”. Any of the videos should suffice but the one with the black silhouette puppet of a machete wielding man is the one to which I refer.)

Congratulations! You’ve won a Brand New Life!
I’m opening a dealership to sell brand new normals at highly discounted prices to post-diagnosis cancer survivors, and free of cost to stage IV metastatic patients. Like a brand new car driven off of lot, you feel free as a bird and you let your excitement build, flying high on life. Accelerating, you motor along the highway with grand expectations of the wind in your hair and the shine of your favorite color gleaming in the sun along with your sparkling, smiling eyes…

Screeching to a complete stop, I shake your head at the realization I’ve got a lemon. Or, shall I say two lemons. The optimistic me thinks about making lemonade.

So, what’s included in the new normal?
warning high sarcasm hazards ahead
The base package may include things like: a new hair style; breast implants; a flat scarred chest; a distinctive and professionally designed tattoo should post operative implants not meet with your new body image; a new job at a lower paying salary with an understanding reporting structure and rest breaks on a downy cot under your cubicle as needed; awesome insurance plans including dental; a long life that won’t worry will change on a whim and without notice; free alternative therapies; beautiful and free cancer retreats not too far from home and including all the health benefits that your body desires; services such as a personal concierge along with house cleaning and perfect laundering done by a professional team of trained elves every night; and a new house built to spec with a walk in closets and huge jetted soaking tub; a boudoir and bathroom that exudes infused essential oils and spouts water; music based on your intuited mood as you enter the perfectly lit spa like bathroom environ with heated floors and a towel rack that hands you 10,000 thread count bath sheets, takes it from the floor; and a Rube Goldberg like https://www.rubegoldberg.com device that brings you a beverage, anoints you with your favorite scent of lotion, slips you into your clothing choices, and pats your perfect and round little behind as if to say “atta girl!”

Your understanding, sensitive and emotionally available partner awaits…. and now you experience the most sensual massage you’ve ever dreamed about. To quote Hamlet, that existentially hindered spirit conjured by Shakespeare: “to sleep per chance to dream, ay theres the rub for in that sleep of death what dreams may come?” Yet, how to dream if there’s no way to find any good night’s sleep and rest a thrashed, exhausted body?

Whose normal is it, anyway?
Once, long ago a descriptive sentence of my life hadn’t used the adjective, adverb, noun, or any other grammatical form of the word normal. I find the word “normal” as applied to me, well…normally insulting. That’s before cancer. Things then changed after my diagnosis and initial prognosis. Before cancer nothing about my life was average or considered normal: my dual majors of English and philosophy of my college degree; leading unbelievably to my business strategy high tech career; all of my intimate relationships and friendships; the bend of my sociological, spiritual and political beliefs. I’m not of the norm.

Wagging my tail or bobbling my head, you’ll rarely, if ever find me at the apex of the bell curve. In fact I’ve not found myself as a median or a middle of anything. That’s with the exception of being the center of attention by default or with purpose. And I find myself spinning around quite often in a roundabout way around the forced conscription into this new life. We are all in a way traveling on our own path, without the use of any cartographers or maps, without the representations of what came before us.

Oddly enough the human condition is situational. Therefore, when tragedy strikes or hard things happen to good people, we crave the stories of others like ourselves and we want to tell our own so others can relate. It’s not a phenomenon reserved for cancer; everyone wants to feel like someone else can relate. Everyone needs community, and that’s about the only normal thing I can find in becoming one in eight and one who has dense breasts.

Yet as an outlier, it’s not the norm I find I can really relate to. It’s the unknown, messier, rockier, and lesser traveled roads to wind our way through the mountains and valleys of life we find more interesting and on which we find success as defined by us, rather than by society. So that’s the path I’ve chosen for my cancer as well. And the community in which I find the best company I hardly think I’ll ever meet in person, although I hope to someday meet some of you.

Outlier as “metser” – don’t pink on me
Never normal again- none of us, not even the pinkest prettiest petunias, the cheerleaders for survivorship and ribbons and fundraising can hide their fear, strength, weakness, joy, depression, or weariness. Least of all, those of us who are post cancer diagnosis of any sort.

Guilt, for instance, isn’t anything I can bring myself to feel these days. Even survivors guilt. In handling everything I never wanted or asked to, such as being unable to work – I’m unhireable, undesirable, and probably couldn’t meet a deadline if I wanted to…
Instead it has to become okay to be tired, exhausted, mentally and physically, from doing what you have to do to survive in this world. It’s a world that wants to believe if we look fine, we must be fine to get back to life as it was prior to diagnosis and treatments that would kill any lesser woman or man alone.

Defining a New Life
But who actually defines their life as normal? And, if you consider yourself and your life normal, then why do you need a new one after cancer or a cancer diagnosis? One should just pick up where they left off after treatments end, right? Wrong. Proof point: started a weekly two-hour program at Stanford Thursday and I’ll respect the confidentiality of our group of about 12 and two facilitator leaders. But I will say that one topic was defining a “new normal” according to which one might carry on life after treatment. Humph. Clearly a “non-metser”.

See how many things on my incomplete list apply to your normalcy. To me, a life with mets normally means:
Cowering with fear of an body ache or a pain
Becoming isolated from society either because my blood count is low or because people think cancer is contagious
Trying to get by financially on what’s left after you pay for medication
Learning the language and protocols used in the oncology community
Educating myself by reading or listening to every book, podcast, or video I can get
Fighting with the pharmacy about refills
Fighting with the insurance company about the same thing
Dehumanizing by nurses and other medical personnel
Hoping for new clinical trials and medication
Dealing with the side effects of chemo, radiation, medication or some combination thereof
Staying up abnormally late into the night
Waking abnormally late into the day
Crying too often
Needing desperately to feel human touch
Desiring the earth and the natural world around your body
Fearing the unknown every waking day
Wondering if that pain or that lump is some progression of our cancer
Attending cancer retreats, peer group sessions, fly fishing, horseback riding, and many other things you’ve never heard of
Retiring at 49
Using the cancer card at the right times and feeling guilty for using it
Understanding the true meaning of mind-body connection
Worrying about a future that may never come to fruition
Writing your will, your “do not resuscitate,” your last blog post, your letters to your people
Debating pink ribbons with non-metsers
Trusting your intuition about your body and how you feel
Quitting drinking wine, eating sugar, or anything you find decadent
Juicing a bag of rutabagas
Eating healthier than ever before
Avoiding putting poisoned and GMO foods in your body
Expressing yourself creatively
DEMANDING A CURE!
Wanting to live…

Is at anything on the above list a normal part of anyone’s everyday life? I hope not. Otherwise you might be a metser. Hey, a new normal comedy routine called “You Might Be a Metser If…” a la comedian Jeff Foxworthy’s “You Might Be a Redneck If…” I am a smartass, but seriously I was never normal. The term new normal doesn’t apply to me and probably makes you recoil too.

Happy Cancerversary
And say happy cancerversary to me. It’s four long, short years with stage four metastatic breast cancer to my bones, liver, and peritoneum. It’s been a long strange trip for sure. And, speaking of trips, do you know anyone doing LSD therapy with metastatic cancer patients? How normal is that question! Here’s to another year and thank you for reading and hanging out with me while I ranted on…I feel much better now. Off to take my apple cider vinegar, baking soda and Epsom salts bath before I rush off to my Taxol weekly chemotherapy treatment.

Oh, and the photo. That’s the handwriting of me falling asleep as the Benadryl takes effect prior to the Taxol chemo treatment. They wake me and ask my name and birthday, which hadn’t changed since I walked into the infusion center an hour prior, and lucky me all on a Saturday. My weekends are shit lately anyway, since my husband’s had a depression relapse. So normal. So very very normal.

The Mystery Award – Much Gratitude to Lahla for Recognizing My Blog

What is the Mystery Award?
Wow an award, so unexpected and so cool. I can’t say I’m not happy to receive the award, though it’s a mystery to me that my words have touched someone enough to nominate my blog. Lahla Brain Cancer Freeish, my nomintatrix to you I am grateful for this award and it’s no mystery that I have a mutual respect for your writing, and inasmuch I wanted to show my appreciation by fully answering your questions and so my apologies for taking so long. We are, all of us, blessed to have a platform to speak our hearts and minds. In my case, I focus on my metastatic breast cancer diagnosis and to living life to the best of my ability and to talk about it candidly and with an audience who support my blog.

Quoted from the Mystery Blogger Award’s Creator:
“Mystery Blogger Award” is an award for amazing bloggers with ingenious posts. Their blog not only captivates; it inspires and motivates. They are one of the best out there, and they deserve every recognition they get. This award is also for bloggers who find fun and inspiration in blogging; and they do it with so much love and passion. – Okoto Enigma
Here’s the link to Okoto Enigma’s blog http://www.okotoenigmasblog.com

Rules:
Put the award logo/image on your blog.
List the rules.
Thank whoever nominated you and provide a link to their blog.
Answer the questions from the blogger who nominated you.
Mention the creator of the award and provide a link as well
Tell your readers 3 things about yourself.
You have to nominate 10 – 20 people
Notify your nominees by commenting on their blog
Ask your nominees any 5 questions of your choice; with one weird or funny question (specify)
Share a link to your best post(s)

THANK YOU THANK YOU VERY VERY MUCH!
She’s an awesome writer and a brave woman. Read her and be prepared to think. Here’s the link:
https://lahla.blog
Lahla you inspire me to continue with my ramblings and to become a better, more relevant blogger to reach out to people who have cancer as well as others who struggle with challenges of different sorts. My expectation of blogging hadn’t included awards by other bloggers who I respect a great deal, such as yourself. If anyone had given me such an honor, you’d absolutely have been one of my selected writers to receive it in response. I’m grateful beyond my words… It’s not just another blog about cancer and its collateral damage.

Three things about me:
1. Once upon a time I was a CEO and Chairperson of a 2,400 person international contact center company with offices in the Philippines, India, and three small towns in the United States headquartered in Miami, Florida.
2. I graduated with honors from University of Florida with a degree in English and a minor in philosophy and I worked my way through school. Since I had my GED and dropped out of high school in the 11th grade, I wasn’t a candidate for admission. And though I had an Associates of Arts degree with honors it wasn’t until I wrote a letter to the Chancellor of Education of the Sunshine State of Florida throwing myself at his mercy and asking for just one semester to prove myself that the day of matriculation for my soon to be junior year, was I accepted. The letter stated I needed to maintain a “C” or better average. I aced all my classes and the rest as they say, is history.
3. I’m a writer. I couldn’t say this sentence until two years ago. I’d thought it egotistical and not applicable until a very wise, warm, and witty man asked me why I didn’t call myself what I am. My writing as a result improved 10x by simple stating a fact. How words do make us believe in ourselves. Now I’m more cognizant about what I say to people and try to bring positivity to my discussions – words can heal bad words can wound. Once something is said, it cannot be unsaid.

Lahla’s five questions:
They’re answered humbly and with the staccato of a shrill, “you like me! You really like me!,” of Sally Fields winning an Oscar award for Steel Magnolias. Should your current youthfulness prevent you from having experienced this rare yet spectator worthy display of gratitude, let me digress for your edification: it’s a moment of true Hollywood humility that seeped into the cultural gestalt of the 1980s. This took place during the era when the bulk of my teenaged, Florida inbred, burgeoning writing career took flight. You may read some of that shrill shrinking daisyesque behavior embellishing my post cancer apocalyptic retelling of my life here on the Cancerbus.

When and why did you start blogging and how does it fit into your life?
Perhaps Lahlah chose my blog and me by way of my blog for this mysterious gift because she found my benign self deprecating humor and my more malignant posts about life with metastatic breast cancer somewhat inspiring and blatantly honest. At least I hope so, and this is why I began blogging. Not to win any awards, but to win the hearts of fellow travelers in cyberspace over and create a place I may go to talk to them one on one. A blog to feel less alone in my predicament and find others who, whether in a similar place in life or who have tastes in poetry and a dark sense of humor like mine. Who likes to talk to themselves ALL the time, anyway?

What kind of things do you do that make you feel good about yourself?
Showing gratitude for small glimmers of hope and pulling out an uncharacteristic spirit-based patience with Craig, my life partner of 12+ years and his four-year depression; writing the past four years of experience with MBC (my new resume) to share with those who may want to peek at my style of illness navigation; holding onto the cat-love of my life when all seems dark and my body hurts the most; and spending time with the friends who have become the rocks on which I stand when my on foundations seem weak and unreliable. It’s not the obvious things like charitable fundraising or making time to generate awareness for metastatic cancer. Those naturally give my heart a fresh pump of blood. But it’s the everyday, the simple slower activities and the gratefulness I feel for having love in my life, that gives my soul it’s nourishment. Also my recent fascination with art journaling as an adjuvant therapy to my poetry and personal essays.

If you could go anywhere in the world OR back in time, where would you go and why?
Four years ago I’d have said 1900 -1930s London, England for the writers and the Victorian sensibilities to meet the Bloomsbury Group writers along with Virginia Stephens Woolf and the rest. But life changes with age and with priorities, so realizing that I’m in a certain time space continuum, and without any assistance from a time traveling mechanism, other than an airplane of course, I’d go to France in the present day. For the je ne saus quoi, the terroir, the art, the TGV trains, the variation in weather, the house owned by Count Lurpak with it’s view of the mountains from the bathtub, the proximity of the south to other places like Barcelona. I’d have moved there if not for meeting Craig 12 years ago. I hope that before I expire I get back to the beloved place for an extended time. In fact if it were the last place I’d visit I’d die happy for it.

What is your favorite food? If it’s special beyond taste, please feel free to share why?
Food is my favorite food – rarely run into anything I won’t eat if offered, although I could live without a few Asian odiferous delicacies. And I cook…anything. My dream if I live so long: make each recipe in Julia Child’s the Art of French Cooking. I’ve created feasts of roughly 1/4 of the well worn, butter splattered tome. So, you may have guessed, I cook. I’ve cooked for as long as I could write, and learned at the side of my grandmother and to some degree my mother. My mom let me take over the kitchen about any time I wanted from the time I turned seven. As long as I cleaned up.

Thanksgiving feasting with turkey, stuffing, gravy, cranberry relish, sweet potatoes, green bean casserole. My Thanksgiving feasts can take place mid summer, the dead of winter, or anytime someone says, “oh, I really crave that turkey you make.”

What inspires you the most in life?
Change inspires. Stagnation kills creativity. So anything that requires change, be it my foibles, my craft, residences, travel, even daylight savings time provides me with enough change to soothe my ADHD and up the ante on my creative side. During my career I changed jobs within and between companies leaving a resume that could challenge even the most experienced of head hunters. My clients inspired me, start ups were my speciality. Now, my life is a start up and every new day brings changes to my body, mind, and soul. Since my diagnosis (talk about change) simply upon waking to see each new day unfold, I am inspired.

Nominees!
Finally, my no my knees, in no order of significance…with a few people you may not have had the treat of getting to know through their writing:
1. Leon’s Existential Cafe http://existentialcafe.blog/
2. Xena’s We Hold These Truths… http://Blackbutterfly7.wordpress.com/
3. A Guy Called Bloke and K9 Kadoodlepip AGuyCalledBloke.blog
4. Sara in Lala Land http://sarainlalaland.wordpress.com/
5. Thanks Cancer – and their podcast, too -http:// thankscancer.com/
6. Unbreakable Queen’s Lifelessons Diary http://Unbreakableyetfragile.com/
7. Breast Cancer Conscript -http://breastcancerconscript.wordpress.com/
8. Molly Kochan – http://everythingleadstothis.com/
9. Nancy Stordahl – http://nancyspoint.com/about/
10. Brian Lageose – https://brianlageose.blog (I forgive you. 😜)
11. Julia Barnickle – http://juliabarnickle.com

My questions:
1. Write a haiku about being nominated for a blogger award and title the haiku with the cartoon character with whom you most relate.
2. What’s your superpower and how do you use it for good not evil?
3. Do you believe in a spiritual world or some kind of afterlife? If yes describe, if not why do you believe this is all there ? ( not just a one word “no” answer for the atheists nominees.)
4. What’s the best place in the world you’ve ever been and why should anyone go there? Convince me. Plane tickets are a good way to convince me. (Joke. The last part.)
5. What are the top 10 songs that make you feel good when you’re down, or inspire you, or you just love to listen to anytime or all the time.

Links to my best posts:
My last two posts I’m very pleased with as my writing matures and I focus less on bitching about cancer and more about looking outwards. I also am proud of my poetry but I’ll let you decide if you want to read it, as I know poems aren’t everyone’s cup o’ noodles.

Dense: Very Stupid Breasts Outsmart Early Detection

Integrative Hope: the prison of a diseased body