NancysPoint.com – Nancy’s Summer Blog Hop, Hop On

Who are you? Tell us whatever you want about you and your blog.

What’s in a name:

Ilene my first name after my great grandfather a cantor who came to the United States from Russia in 1910. He wrote and sang liturgical Hebrew music, which is still sung in temples and synagogues around the United States – his name was Isaac and I was supposed to be a boy. I always wonder if I had been a boy would I have still gotten a breast cancer diagnosis?)

Alizah loosely translates to “merriment ” in Hebrew. Ironically or never ironically in Hebrew naming my great grandfathers name Isaac means “he will laugh.” Inaccurate, as he was a pretty serious dude. Perhaps my birth cheered everyone up on the first day of summer at 8:26 am in 1965. I’m undeniably a Gemini or so say those who read our futures in the planets and stars. In the years before my mother died, prior to her decline from dementia into full blown Alzheimer’s, before 2013, she would call me at 8:26 East coast time no matter where I was on the face of the earth and she would say “good-morning sunshine! Happy birthday.”

Kaminsky, Russian for brick layer or hearth builder is a fairly common name in the New York phone book; the Jewish cultural sect and my last name was Mel Brooks’, Danny Kaye’s and a few other celebs before they changed it to something more pleasing and star worthy. My dad’s mom died of metastatic breast cancer and I was told so often I was the light of her life. Stories of how she would spoil me with riches beyond what my parents could afford and my mother seemed jealous of the attention although happy to hand me over whenever possible for her own sanity as I was a verbose child from a very early age. This blog is a product of all my experiences and my cancer diagnosis de novo stage 4 lobular with mets to the bones initially in March of 2015. It’s been close to 5 1/2 years and I know I’m on borrowed time but I love each moment and relish the changes each new day brings as I always have. I wrote my first poem of record at the age of six and I remember writing on top of the radiator in my bedroom looking out over the courtyard watching the snow fall on the swings. She saved it – I have it as an example of “look what I made” as my mother would call me when I did something good.

The Cancer Bus was christened as such Because I got sick and tired of hearing, “everyone’s gonna die and you could just as well get a buy a bus,” upon hearing about my diagnosis with stage four breast cancer. So that’s where the name comes from and it’s very unlikely I’ll get hit by a bus especially given there’s no bus service to speak of in the rural area of California we recently moved to.

2. What has been your biggest blogging challenge during this pandemic, and how have you been tackling it (or trying to)?

Clearly we all face isolation and uncertainty, and shifting those to a more positive stance, I refocus on time (more of it to do things I never had time to do before) and change rather than uncertainty. Both have implications roughly with the same impact but rather than driving negative connotations into my words I try to spell out how to shift our mindsets towards how to make the very best of each moment rather than sit around pouting about what I cannot do. This begs a serious set of questions: What makes my life worth living and what would make it suck? Then I focus in on what’s worth living for, because that’s what’s worth writing about.

Those topics matter most to me, which some may find too philosophical or even too much for the seriousness of what’s at hand in our world and specifically in our country where I just read on npr.org that .04% of the US population has died due to COVID. I think that might be more than all the wars we’ve fought in – not collectively but individually – and I am only guessing on the second point. The first has near a half a percent of everyone dead from this virus and we have no one to blame but the selfish jerks refusing to wear masks and practice social distancing and a lack of direct and uncorrupted leadership. I’ll leave it at that.

3. What is something you’ve accomplished with your blog that you’re most proud of?

As trite as my proudest accomplishment sounds, it equates to the continued goal of writing the Cancer Bus blog: having people reach out to me through their comments and via email telling me that my words have given them strength and the ability to communicate they hadn’t been able to prior to reading my blog. I’ve always wanted to positively impact someone’s ability to work through the way they feel about having cancer. As exactly the goal of https://cancerbus.com/ from the moment I sit down to produce every piece from my first, albeit very amateurish posts to RE-blogging important essays and data to my poetry, reaching out to others – even a single person – to give voice to someone where before there was silence was always the best accomplishment I could achieve.

I was hoping to reach just one person. Ive reached far many more than one. And I’m raising my voice above the din and chatter, which sometimes gives me the motivation enough to write next week and beyond.

4. Share two of your best blogging tips.

Firstly, I keep a notebook with me everywhere I go so if an idea strikes me, which I may or may not use, I write it down and have record of it. I may use the idea later to build an entire blog post. Perhaps it may be a quote that I heard that’s inspiring. But writing those ideas down really helps me to create more well rounded and diverse blog posts. Never do I be,u do for a moment, “yeah I’ll remember that later.” I won’t.

Secondly, I read other people‘s blogs. I like to understand what others are talking about and form a sort of conversation between my blog and theirs, especially in the metastatic breast cancer community but more broadly than that, like with humorist @BrianLagosse. I find that there’s a lot of support between us in those loose conversations. Someone may start writing on a topic and in a way I might pick up where they’re going or where I think they left off and grab the baton like a relay of sorts, and continue or even create a kind of relationship in which I can answer a question either directly posed by the blogger – @Nancy’spoint is really good at providing fodder for blog posts through her questions in each of her posts; or through ideas that may become broader topics like @JuliaBarnicle, @AbigailJohnson, or @WarriorMegsie. Meg and I recently had a call to action over racism and both of us answered it differently yet answered it in a welcome accidentally tandem way. As always topics of a charged nature require a swift yet delicate pen and the wisdom to know when to shut up.

5. What is one of your blogging goals this year?

To leverage my content for a book. Preferably an audio book. I have a working title, ‘The Hope Chest.’

6. When things get hard, what keeps you blogging, even if not regularly?

My followers and honestly getting my post in on time to be able to get into Marie Ennis O’Connor’s @jbbc Journey Beyond Breast Cancer weekly breast cancer blog round up. I kind of reward myself with that honor and staying in the aforementioned conversation. Things move rapidly personally and in the community so it’s a useful and positive way to energize my writing even if it’s a shorter post, which I’d say isn’t my forte.

7. What is a dream you have for your blog?

I really want to make a few of the top breast cancer blog lists (vain I know but allow me if you will to explain) and to have my husband be willing to read it before I die, because it’s ultimately a gift to him. He can still know how much I loved him after I’m dead and still hear my voice, and I want him to feel more proud knowing I was recognized for my writing and not just a little pet project.

8. Share a link to a favorite post you’ve written that you want more people to read.

https://cancerbus.com/2019/02/25/hope-and-the-prison-of-a-diseased-body/?preview=true&frame-nonce=b07bfd29ba

Integrative Hope: the prison of a diseased body – the feelings this blog piece evoke never fade but continue to go on and deepen as I reread it. I think a lot of people can relate to the depth of losing someone they love dearly and how time helps the pain but the memories continue with us. There’s several interesting quotes by unexpected authors as well.

Thank you Nancy – you inspire me all year and the thought of not participating in your blog hop this summer wouldn’t do at all.

Much love,

Ilene

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Blogging for My Life

Fast. Faster. Gone in a moment. Sometimes before we realize how much faster cancer cells move than our bodies can fend off. We look in the mirror and watch our faces change. We feel our skin and it feels as though it’s not our own. Our breasts change in size, shape, and functional capabilities. Instead of life giving joyous appendages they’ve become hired guns out to kill the very support system for which they once worked. Some of us never had the joy of motherhood bestowed upon us by nature’s design. And that’s okay because we still, as women, must become the bringers of life to those we love. Our purposes shift but not without our reason d’etres in tow.

Eventually we all know our consciousness ends and the world we lived in becomes one in which our deaths are survived by those who once cohabitated and collaborated in it beside us. I refer to all of those who share in our experience either in person or now, those who live virtually close to us and some of whom equal in importance for our lives to ease down slowly when the dying of the body disallows physical contact for varying degrees of importance in reason. We show love and support regardless of the miles of distance between our physical selves. How fortunate to be alive in the networked age of innocence? Insouciance isn’t an option here because in matters of life and death the difference is so great that indifference would become a criminal act against humanity. And I’m not being tongue in cheek. It’s truly that important to the isolated percentage of us with cancers that have gone rogue in our bodies. The 30% of the 40% who have had cancer in the past. Then those like me who “present” right at the stage of the spread from an originating tumor. It’s not our fault. It’s not karmic retribution. It’s 90% environmental and 10% genetic and we never saw the bus coming before it hit us.

We share our inner most selves here. The kind of personal stories once so tightly held to the vest we wouldn’t share them with our best friends sometimes. And yet here we splay ourselves out with words rather than looks or hugs or facial expressions of joy or pain. Yet we have the protection of how much we allow out into the privately public eye, and feel more secure as people become friends who we absolutely love and appreciate as we would a friend who lives within driving distance.

Given this caveat: ours is a false senses of security since that security really is just a matter of how much or how little we are willing to share of our own story. Albeit our stories are without the input of those of whom we may speak, of those who saved us, made us happy, and loved us. In addition we may choose to relate our devastation over those who hurt us, make us feel shitty, or something as bad as making us so upset we would rather lose consciousness than get metaphorically beaten down towards the bottom of of some common unknown. In the instant we publish ourselves in a blog post we open ourselves up to scrutiny fearlessly hoping for understanding and love in response to our cries and laughter to our humorous rants.

In our most intimate and interesting posts we open up like bodies under the sharp knives of a small town morgue’s medical examiner. We let the light shine right near our dearest most personal stories under the eyes of people who need to know we are out here for reasons of solidarity around the topics of cancer, dying, and death. That last post on my blog may be by the very person who I talk about who could not handle watching my life slip away and who treated me like shit because out of love they couldn’t find a way home again from the hospital to be by our sides through the most difficult things we’ve ever been through.

The death of me isn’t the true death of my story anymore left to those who outlived me to tell anymore. Better yet, even after I’ve lost physical consciousness my stories can help those who get even better medicines than were available to me to learn what it meant to have metastatic cancer prior to the breakthrough that saved them but missed me and others like me by a few years, months or worse, days. Here’s what it used to look like to walk in these shoes when our diagnosis of stage IV is a death sentence. A perpetual march to the surge of tests and chemicals until no more can extend our life anymore and we must enter the limbo state if not knowing quite how long our bodies can contain the faster growing cancer cells.

The living go on as we go to sleep and one day our consciousness doesn’t return from rest. It’s in the spaces between existing and not existing where we live all the time. It never leaves – “it” meaning the knowing our mortality before we reach the finish line. Every day actions and activities once just ordinary become extraordinary. Our bodies are not ourselves but become the very enemies we dread in a dark alley alone at night facing down an armed assassin. Though it’s certainly been a frightening place to live for so long now, I’ll take it over not seeing another black calla lily or great redwood tree. I’d take that alley fight over never feeling a real hug again or the warmth of a body – friend or lover – as you sit comfortably next to one another critiquing a film’s bad editing or gasping at the sounds of a commonly loved piece of music.

I cannot believe all of us are here now – reading each other and loving each other and opening and closing like the rains hands in the ee cumming’s poem. No one not even the rain has such small hands. No wonder it resonates with so many people in love. There’s a universally understood unknown that makes no sense yet makes all the sense in the world.

And by god I know if you’re reading this you know exactly what I mean.

All my love,

Ilene