taxol

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.

💜

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.

I will pray for you

If I hear you say, “I’ll pray for you,” I’d like to know what prayers are enchanted, spoken aloud, spoken to yourself, written or expressed without the consent of the NFL or the Roman Catholic Church. I’d love to sit quietly and hear the truth to God, the universe, and the restaurant at the end of infinite space and time (a conundrum as rich as a prayer itself.)

But I don’t hear anyone praying. There’s no cancer Mecca where everyone faces east at a specific time of day to pray. If your words are true, come sit with me and share your prayers. Else, please don’t say you pray as a good way to design an end to a conversation in which you’d rather not participate. If I can handle nearly every night in the hospital since thanksgiving up until nearly mid December, it’s perfectly okay not to pray for me or say you even think about it, but maybe you do. So, my heart says, “leave it alone and don’t look a gift rabbi in the mouth.” But I can’t let this one go.

How’s oncologist’s prognosis?
My oncologist looks wistfully at me as if he’s in awe of my state of being alive. I imagine the adjective “whistful” hasn’t been applied to him since a love letter from his now wife of over 25 years sent back in medical school in as many years ago. I love my oncologist for knowing he doesn’t know what to say. For knowing he really wants me alive. For knowing in my heart the hope in my eyes reveals itself to him. He dares not crash it like the crystal palace so burned to the ground almost symbolically before the beginning of Hitler bombing Britain, before Chamberlain said I quit, and before the Lion, Churchill came to pray, too.

Such as upon The Duke of Windsor’s abjuration of the throne for a twice divorced American social climber extraordinary. Yet she remained until his death some 30 years later as his wife, and certainly more interesting than a sniveling ex prince. My doctor would no more give up on the throne of my health than I would. So I know when he prays for me, and he does, I needn’t listen in because he brings them to me like letters tied in bows and looks at me with a sidelong smile saying bless you and keep you and let’s get this thing, huh? I’m his miracle kid.

My palliative doctor: She’s gone from the Stanford practice and my new palliative oncologist basically types, nods, and hands me prescriptions for medication. That’s why I thought I’d ask someone I trust. My old palliative had recommended CBD to THC 3:1 but that was before taxol. Now I’m on my online groups and everyone has a different opinion but no one lives here in northern California. It’s kind of a strange hypocrisy that everybody does it but they don’t say they do. At times my stomach is in so much pain even compazine doesn’t help but smoking marijuana does. It’s a crap shoot and my friends generally help but this is beyond what they know or want to understand.

So I tend to reach out when necessary to people closer in situation and like I said, who I trust. Marijuana’s legal, but not regulated for promised content of purity so there’s no standardization. I’m essentially on my own doing what I think I need.

The good news: I’m incrementally the very slightest bit better each day. However the chemo is very very hard on me – I cannot say less good about this radical pathway to getting better than that. I’m driven to believe there’s a better way. If the patient is gone, what’s the point of treatment. Mind you if it’s saving my life I’m not complaining.

How deep is your love?
Craig’s busied himself on home improvement and seems to have pretty much recovered from his depression finally, but he’s still somewhat tenuous. He’s unable to handle illness and I’m not as utilitarian as I once was – the need and the ability are both gone so we shall see what the future brings, but for now, my friend is coming the day after Christmas to help me until the 6th or so and my old housekeeper insists on coming and cleaning and helping me with my online shop stuff once a week for nothing. I insist in paying her something since she’s not responsible for the cleanliness of my home. I have angels in my architecture peering out – she’s one of them. And she had to promise me to please quit smoking. And being a good sweet person she aims to do it.

I have several good friends who check up on me too. I’ll probably go to a friends for Xmas dinner instead of being alone. I’m saddened that neither of my stepsons have asked about me and I haven’t heard one peep from my younger one, who really surprises me. I don’t even have the 19 year olds new phone number – I’m not asking either – I spent 10 years raising them. But I know it’s either not even on their frontal lobes or it’s just like with dear dad, if I don’t have anything to give why bother?

Last year I had loaned the younger kid over $500 for Xmas and for tickets to a concert he took his girlfriend, whom I’m glad to say he’s still with, and he couldn’t pay me back. I forgave the debt, but since then he seems even further away. Like everything and everyone seem a little more distant and like a good diaspora shouldn’t come return again. But it was never this way until this year and now zero words at all get exchanged. I know nothing changed as far as how I feel but granted a year and a lot of water has traversed the spaces in between and I’m simply the undeniably dying evil stepmom now.

Always something there to remind me.
People cannot just pop over anymore, although company keeps my mind off my cancer. I was supposed to go to LA next weekend for a Byron Katie New Years cleanse to which she gave me a personal scholarship to go but I clearly cannot. I wish that I could and was in better condition to steep myself in healing practices and guilt releases of the most obstinate kind. The kind that wrestle your soul until the bitter orange end gets bitten off at the navel and just as you’re ready to say, “I get it now!” You’re gone.

There’s a certain audible cruelty with this tumor in my peritoneal cavity. At least we know once you’ve got metastatic it’s no lie – you can be fine today and dead in a month. I believe this pain is a universal nudge for unclasping my hands, untying my blindfolds, seeing what’s realistic, and slowing the hell down a bit. And I bit off way more than I could chew. So I’m sorry the cat really had my tongue.

Each morning I wake up…
If you say prayers what are they? Are the words biblical, just a short thought of something bright and healthy, or vibes of happiness in general? What, if you don’t mind sharing those less personal in nature, do you pray for when you think of a sick friend or relative? I would appreciate if you’d please leave a comment. I’d really love to hear from you, and as cheeky as I may sound, I know it’s serious business. That’s why I’m slightly veering off the ramp towards Offended and off the road when I’m blown off of a text or phone or in person conversation with the words “I’ll pray for you.”

Will you?