Op-Ed: Regarding Cancer and Making Personal Connections

My dear friends,

I’ve received so many amazing letters from people who read my blog or found me through another online channel like my Etsy shop, YeuxDeux Vintage, or on Instagram or Twitter or Facebook. They read about my diagnosis and my current life and find common ground, and I’m honored to communicate with people who were touched enough by my life to personally reach out. I appreciate their candor and I am especially humbled by the emotional outpourings of some of the communications I receive. Unnecessarily, their email begins with an apology for a “stranger” so openly sharing their experiences with me. But are we really strangers?

It’s impossible for me to conceptualize the idea of a stranger. If you believe as I do that we are all made of the same “stuff” the universe is born from, then we are all part of a single infinite family. I’m very much Jungian in my spiritual beliefs. On the other hand, my father, who studied Freudian psychoanalysis and was an atheist, never appreciated much about my spiritualistic tendencies. Jung’s theory of synchronicity certainly supports my belief that we meet people when the right time and space collide, however our acquaintance comes to fruition be it virtual or face to face.

I’ve learned that the people I meet virtually share my own philosophies and align with my experiences far more frequently than a smaller circle of people in my immediate geography. Makes sense mathematically – there’s nearly 8 billion of us globally and only a few hundred thousand around me. I have also decided to lay bare my personal life on my blog. As a part of the confessional nature of my writing, my pain and my emotional turmoil make my the most private inner world available to those who were heretofore unknown. Some with cancer, breast or metastatic or other forms, some care givers to those with diseases of the mind and the body, some creative writers, and some lives carry emotional similarities to mine.

Anyone who decides to engage with me receives a very dear gift in my response. My words are wrapped with care and a certain kind of love that’s unheard of where I currently reside. Still, I find isolation in my life with cancer.

For instance, last week I could not stop thinking about my mortality. How could I find a way not to ruminate as my three year diagnosis anniversary in my rear view mirror and oncology appointments and chemo and other therapies in the windshield looking at the unknown duration of my life on the road ahead of me. I snapped at my husband for his glaring lack of celebrating life’s time markers with me. He instead ignores them as a way of ignoring what I’m coping with primarily alone. In fact there is no more time left to avoid celebrating cancerversaries, birthdays, and anniversaries. He’s very good at disguising his sadness with annoyance, using my disease, my side effects, and my cash flow as excuses. Such bullshit.

We are both aware of his avoidance. He has yet he to open his heart, to 0 —-0–ÿh0is true empathy, or allow my state of being to enter his consciousness… without relying on such lame excuses. I too wonder if the overwhelming amount of crap piled up between us is surmountable, and the task ahead staggers my mind. I wonder if we can ever find new footing on which we can look through the same windshield from the same vehicle to make this trip together. Yet he cannot completely get his mind to wrap around a tremendous daily uncertainty. It’s all too much for someone who thrives on order.

This may provide some insight as to why I’m happy to find the better part of my human condition and to find connectedness where and when it presents itself. I find peace with all that life’s delivered on my doorstep, whether or not I order it from the infinite universal catalogue of “Oh My God.” There’s so much complexity to a life, irrespective of whether one finds themselves with a cancer diagnosis. By the time we reach 50 the explosion of our entire life’s plan is the last thing we expect.

My plans got blown to bits but heart remains solid. So, keep those cards and letters coming my friends, keep them coming.

With love,
Ilene
Head Driver
The CancerBus

P.S. Sorry it’s been a while since my last post. My minds been occupied with heavy things and I’ve tried to pay better attention to my relationship to insure it’s survival. As my friends, I’m sure you understand.

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.”

The Gracie Foundation

Everyone needs a little pampering, a surprise gift of love, and no one moreso than a person with metastatic breast Cancer. The Gracie Foundation provides all that and a deep feeling of warm love in a priority mail box to its recipients. I received mine on Monday and not a moment too soon, either. You can nominate yourself or be  nominated by someone else to receive the amazingly beautiful and incredibly useful, high quality priducts to make breast cancer treatments just a little easier to bear. In my box: a large bottle, with pump, of body lotion; a scented soy candle; a cooling eye mask; a bath scrunchie; a gray knit cap; pink warm socks; an awesome mug for a big cup of tea; delicious scented soap; a pen and todo pad for chemo brain days; face cleansing wipes; and a book explaining the origins of the idea and the woman who founded this wellspring of love to carry on her legacy through giving even beyond her physical lifetime.

Gracie’s husband, who she married just a week before her fight with cancer ended, carries on her legacy and so he and volunteers ship off a little of Gracie’s beauty to others who need a bit of that special thing that made her a much loved woman of substantial giving.

Thank you, Gracie. Your spirit and soul fill my heart with beauty and joy, and I think that’s just what you had in mind. ♥️