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.

💜

A Dramatic Start to My 54th Year

Ah, dear friends, if drama comes in cycles, I hope this spin round the sun is a mere blip in time. But aren’t all things in the end?

First, my friend who lost her job and since living here with us instead of in her RV on property owned by her uncle. The property sits so close to Yosemite that it it left with with no internet access and little cell service after being simultaneously booted from her house in Reno by her landlord who is selling the house, has landed three high level tech recruiting positions in the span of two weeks, with two of her three kids). The third child is my cancer god daughter and illustrator of my book based on the blog with more of my musings on life with stage 4 cancer. She recently married Autumn her wife. I met her and her family while she dated my 21 year old step son and now she’s married to a girl, which says all it must about my stepson.

Meanwhile, C had a rare yet bad reaction to his strong MAOI inhibitor after three great months and started passing out and doing very unnatural things for his usual conservative public persona. Just when we were in Auburn, CA for house hunting where he lost our car key and my god daughter and wife drove him home shirtless in the back seat of their Prius. Upon arriving home my neighbor and ex-realtor came running from her garage pawing him and exclaiming are you alright? Did she do something to hurt you? Are you okay? He said get off me I just need to sleep and god daughter yelled as she ran interference like a linebacker got him successfully inside safe from the claws of said neighboring ex-friend.

He went stumbling upstairs to open the safe to retrieve the key fob and fell asleep right there. Said newlyweds drove the key 2.5 hours back to me where upon I got dressed and had to cover one eye to stay on the road due to bad eyes from 26 weeks of taxol chemotherapy. This trick wound up turning a 2.5 hour drive into a 5 hour drive with lots of eye drop stops and bad coffee. The next day after arriving home to take care of tippy canoe I received my Ibrance CDK3/4 inhibitor.

I was so unnerved and sleep deprived, battling my neuropathy and loss of feeling in my hands which is at an all time high, that while attempting to take the second dose, I dumped them all in the toilet. God is telling me “too soon for more poison put it down for this month.” $18,000 down the drain. Teary eyed I kept C in the upright and locked position for a day or so more until he could walk without falling over from a brain flooded by serotonin.

We finally have a contract with a wonderful and experienced realtor to sell our house. This comes after my 10 year supposed friend and neighbor refused to quit splitting my spouse and I apart telling us both different stories, flirting with C and pissing me off royally. Now we must find a house in the trees to make a better life for us both away from the nasty people in San Jose and where I can write, make art, run my Etsy shop and decorate in light, life embracing colors rather than the goth chic look of of our current dwelling.

Oh, and I turned 54 in the midst of this shitstorm. A fine way to get all the drama out of the way good and early this year.

Much love and happy Fourth of July,

Ilene

Peace, Peace: our universe of caregivers

Traversing my inner space wearing the lens of metastatic disease, my inner eye wanders into dark places at times. The glasses have me reading invisibilities into ideas that have no real importance. Ideas such as what my life’s purpose what could I possibly serve the world when at the moment I was diagnosed with #metastatic breast cancer three years ago, my needs far outweigh my ability to give. Many days my questions return only an inner sigh of response. My contributions and defining myself and my roles becomes so foggy, so unclear to me.

Further with a partner recovering finally from long term #depression it becomes even more unclear: is my condition a contributing factor? How can he not see me as even slightly inspiring to want to get well and do the work outside of the psychiatrist’s office? Eh. It’s all so, “boohoo, poor little me!” I tell myself to get over it, just as my chemo arrives via UPS, which ironically I could not afford the $3000 copay for without financial assistance. I recive a gift monthly to get my life extending #chemotherapy, #Ibrance from anonymous and generous people who donate to the Patient Advocacy Foundation, for which I am grateful.

After a morning of inner question wrestling, I finally wrenched my sorry self up and stole away for a few quiet moments today to work on revisions of some poetry. This, while I could listen in and out to a program on astrophysics that the C was watching, making me feel even smaller and inconsequential! Then a gift from my friend Elizabeth arrived in the form of an email, and just when the universe’s infinite wisdom knew it should. Her note reminded me of my importance above and beyond an old outdated and outwardly defined meaning of “self.” She complimented me on the poem I wrote for a memorial for her mentor. I am so grateful to have contributed in some small way in helping Elizabeth in her mourning process. Her mentor, Jnani Chapman, who was the true embodiment of how healing can transpire through faith, love, human touch, and yoga practices.

She remains an inspiration who helped so many with cancer and training those who dedicate their lives to helping us. I met Elizabeth and Jnaini at the #Cancer Help Program (CHP), which I attended last October. Elizabeth took over Jnani’s massage therapy room where she practiced for almost 30 years. It’s in a very sacred place in this world and you’d have to truly experience it to how the place itself ushers in healing and peace. My photos don’t transmit much of this feeling but you can see a little of it if you venture into my portfolio on this blog.

Jnaini died in December unexpectedly in an automobile accident as she traveled south to catch a flight back east late one night after a CHP retreat at #Commonweal in Bolinas, California. I told my friend that undoubtedly Jnaini would want her to give her gifts and carry on her legacy in that room. Once an understudy, the time had come to take over as the leading lady. Elizabeth, like Jnaini, is an amazingly talented, empathic, and beautiful woman who offers the world care and love. I reminded her the importance of not forgetting about herself and to take time for self care. Any of us can become so enraptured in the gift of helping others at times we forget or we believe we don’t need, or worse, don’t deserve self care and loving kindness from others. We all deserve love and care and beauty every single day, be we cancer patients, caregivers, physicians, nurses, non profits, and the list of supporting people we can forget as cancer patients are out there battling along on our behalf’s.

We all must remember that the state of mind we call “alone”or “lonely” really is just that, a state of mind. If we allow the goodness in the world to enter our soul spaces and stop minding the sole space we physically and temporarily exist in at a given moment, then perhaps a smile rather than tears washes the pain of our disease away and let’s healing take its place. Sometimes, even the vastness of the universe as seen through the astrophysicist’s telescope doesn’t make us seem all that inconsequential after all.

And as Michael and Waz two of the founders of the CHP close out a discussion at Commonweal, “peace, peace.”