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.

💜

My Bi Monthly Cancer Wellness Survey

If someone handed you a clipboard with a survey attached regarding your “wellness” today, how would you respond? Doing my best to circle the closest answer to each inquiry using various rating scales, I hand the one-sided piece of paper sharing all my hopes, dreams, pains, and happiness to one of two nurse practitioners. Neither can truly comprehend the fitness of m6 mind and body by grazing over my confessional. Worse, they seem as uninterested with a quick flick of the wrist it’s tossed on the exam room counter, after it’s removed from the clipboard. I believe I spotted an eye roll of cynicism as I sat watching for an6 sign of interest on their face.

As always I inadvertently misappropriate the ballpoint pen on temporary loan I really don’t need, given my penchant for purchasing an embarrassment of redundant office supplies, to fill in the survey: “YOUR WELLNESS: how well you feel so your cancer center staff could attend better to your needs?”

The Stranger
Immediately an Existential crisis ensues. Such questions provoke an intensely dramatic Shakespearian-Hamletesque- “to be or not to be” soliloquy of the mind, or just plain thought vomit. Hopefully I don’t puke all over the page as I must determine the scale on which my most important stressors exist including appetite and nausea. For instance, rating my ability to think and judging during this particular day a level of satisfaction with my relationships? Seriously I think it’s not cogent at the moment, but I answer evoking my centrist point if view, since going too far right means I’m really angry and headed too far left means I’m going insane with happiness. The middle answer for the question is “sometimes.” Makes sense I suppose and I do not need those prescriptions adjusted.

Also I’m pursued by this paper chasing mind stalker to rate my current pain level. Do you mean right now? This morning when I got up? In general? If they mean at that moment right then or that just passed while I’m filling out this supposedly innocuous survey of my overall well-being? It’s giving me gas and a bit of acid reflux, plus this pen is really crappy for a nice place like Stanford and gives me a hand cramp that won’t let up due to neuropathy. (Note to self, donate nice pens for metastatic patients to lift in my last will and testament.)

What does it all mean?
Now the real kick in the ass – how I rate the meaningfulness of my life on a scale from excellent to poor, my activities in my home, social life, and community rating from completely to not at all. Two specific questions require an essay by Diogenes regarding cynicism and stoicism but there’s no blanks for open form answers. If you’ve read my posts you’re thinking the form might require five pages of addendum to control my verbosity. The questions in question:
My life lacks meaning?
Irritable, anxious, or depressed?
Rated from “never” to “always,” and “sometimes” the middle ground, on this particular day, I circled “sometimes.”

Sometimes my life lacks meaning for reasons such as my usefulness to society in general, to my financial stability, to my husband, to my friends, even to my customers in my Etsy shop – shameless self prhttp://www.yeuxdeux.etsy.com – should you want to do some holiday gift shopping from a very small business that directly supports metastatic breast cancer at the grass-roots level.

The purpose of consciousness might be as simple as love. Therefore we are all here to bring each other joy through love. And I firmly believe love is our purpose. What if, as imperfect as we are, we can achieve a clearness of mind to allow our thoughts about people to fall away, and rather than judge them love them instead? Wow! the joy we could feel if we lived without those thoughts, and the love we truly feel could comfortably be shared even further than inside the doors of our rooms.

Try a little tenderness.
Experiment with the following: show a little love to somebody you don’t particularly like today and see how your whole attitude about them and yourself changes in an instant. Perhaps, you can love yourself a bit more, too. But don’t give them a satisfaction survey when they’ve been loved sufficiently by yours and their agreement, because you’ll lose the squishy warm feeling of human interaction to the marketing puffery even taking place in your personal brand study.

Cynical? Nah.

 

 

The Antonym for Pain

Quotes about love. Google it. Many astute current and historical figures have quotes basically translated to – a life without love is not a life at all. I think Shakespeare said it’s better to have loved and lost than never to have loved at all. Actually I’m uncertain it Shakespeare but I’m not going to Google it. The one thing I can live without in life, in sickness, is pain. Pain, so it is said, presents itself so that you can appreciate the good times, the happiness…so you can appreciate. Appreciation of not having pain? Appreciation of what exactly?

I definitely appreciate those times in my life where I didn’t feel any pain at all in the morning. Smiling and eager, a hopped out of bed when as a young girl; I couldn’t wait to see the gifts of constant surprises of that day lifting me up and urging me to bounce up in the morning. My mother didn’t always see my urgency that way, then again I do not recall the last time I could say my world was carefree. These days, on the cusp of 52 years old I can’t wait to go back to bed so that I can lay down my cancer thrashed bones, and rest. l rest, read, and write. Much better than doing nothing at all – just like pain and appreciation. It’s better than appreciating nothing at all. I learned a new word this morning: compathy. Coined by a statistician at the turn of the century to describe the feelings of caring or grief that occurs in a crowd of people about a sad event. Seems so apropos.

With metastatic cancer to the bones comes a pain that I cannot find a way to describe to bring you, dear reader, to feel compathy for my sadness and my loss.  The physical pain invests itself into a marriage with your consciousness as well.   There’s nothing like it that I’ve felt that’s so physically omnipotent. Imagine having hot tongs that black smiths pick up horse shoes from burning coals hacking away at your insides. After a while those areas were cancer left its mark behind or new areas where its moved to grow, the pain becomes even hotter. Fierce.  In the two years since I found out about my diagnosis, I’ve shrunk about a quarter of an inch. I’m a 6 foot tall woman so for me not being 6 feet takes away part of my identity. I was very tall as a child. I was 6 feet tall by the time it was in 10th grade at 15 years old. So from the time I was 15 until now I’ve been 6 feet tall. It’s like when you lose your hair from chemo you lose part of your identity. We’re not ourselves anymore. When a woman goes through the violence of a mastectomy and one or both of her breasts are gone something of her identity is gone. Something that identified you as female is gone.

But with bone mets no one can see what’s going on you don’t really notice that I’m a quarter of an inch shorter unless I tell you and even then it’s not very much. But think about shrinking a quarter of an inch at 51 years old. I now understand the women I see hunched over on the street hanging like bent trees on walkers. They come outside each day, if there’s no malignant weather, from the old age home next door to our townhouse. They frown in skin of painful evidence though they’re walking just a few blocks just to get some fresh air. Pushing scaffolding around their bodies thrashed over by one awful thing or another like arthritis or osteoporosis. They’re in pain most of the time I would imagine. But to be 52 and understand what the pain must feel like to be in your 80s physically seems rather untimely and unfair.

I remember my mother’s mother, my Grammy Sylvia, in her late 70s and 80s. She stood just 5 feet tall. She was very well endowed with large breasts, whereas I towered over her since I could remember. 6 feet tall and just a bit of a B cup, clearly different from my grandmother’s body type. She didn’t die from cancer. She died from sadness. In a condo in Florida she lost my poppa Bernie and lived on for 10 years after he died. But it was something she never got over. I felt compathy with her and visited with her nearly every week sometimes two or three times. For her, alone and grieving, even small aches and pains probably seemed 10 times worse than they really were.

I have my husband and the good news is he’s coming out of his depression. There are days it shows its ugly face and then it lifts, and I’m incredibly happy to see my husband again. Yet on those days the depression takes him away I learnt to really appreciate the times I have him all to myself. If you unfortunately understand the downside of this horrible disease then you know how I feel when he’s depressed. How I dread not having him around me. Not having anyone to make me laugh. Not having anyone to hold my hand to tell me a joke and to tell me “I love you.” He’s my family and the only real family I have left. If not for him I’m not sure where I would be, what I would do today or tomorrow, or where I would live, or how I would feel. It’s a vastly different life than I have now. I’ve concluded the following: I don’t think The opposite of pain is health, maybe the opposite of pain is appreciation.

You can appreciate things a whole lot more when it’s painfully difficult to get out of bed in the morning. And you can appreciate love a whole lot more when you don’t know how much longer you have to love that person. Because you know what you’re going to leave behind is in pretty. Isn’t happy. It’s not going to be good for anyone who is involved. What I hope is that I will to those who knew me an appreciation for life. And perhaps an appreciation for who I was. And perhaps even an appreciation for who they are. I hope one day my lovely man loves himself as much as I do and know that he is of the most gifted and wonderful souls the universe given to us… to me. And to the people who left my side and scattered like ants away from me when my diagnosis came down like Maxwell’s silver hammer: without Craig I would not have anyone to appreciate life with and then, like my grandmother, the pain would really become even more terribly sharp in a single instant.

I appreciate love.  Perhaps, for me,  pain’s opposite isn’t appreciation, pain’s antonym (and it’s antidote) is love.