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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Poetry Friday @JBBC Journeying Beyond Breast Cancer

Poetry Friday

Poetry Friday
— Read on journeyingbeyondbreastcancer.com/2020/02/07/poetry-friday-169/

I write poetry when the my heart calls to me and as a job of sorts, I must write to practice the craft. Draft after draft. (Crumlples up paper, throws and misses basket, starts again…) I write haikus in #haikuwars with @thankscancer and their followers. I write poetry and share it publicly and it feels like I am tying myself to railroad tracks, waiting for the locomotive to come tear me from myself since it’s so vulnerable to put any kind of art out into the public eye. Will you find it cheesy? Ridiculous? Should I just smash the keyboard? Like any artist wants praise they’re also scared to death of the critical eye. Not when something comes from the heart, however. When the words flow regardless of what anyone might think because we know it’s just right.

Having written a poem recently as an ode of sorts, as a thank you note for her work on behalf of the writers in the breast cancer blogosphere. No matter how busy her week was, no matter what else she must have going on in her life, Marie Ennis-O’Connor @jbbc rolls up global breast cancer blog posts each Sunday night. Mind you this no small task, reading all those blog posts and quoting some, giving an educated summary of others, she’s a loud voice for the breast cancer community all week long, attaching social media to the voice of the patient, and patiently waiting for the medical and oncology communities to catch up with her.

Marie tweets her Weekly Round-up driving readership to our blogs. And we read one another’s posts and promote them as time that week permits. All of them different, some taking on similar topics in a different voice. Introducing new bloggers, though that means someone else has been diagnosed with breast cancer. A sad reason, to be sure, but to soften the blow just ever so slightly because of the support we receive. That’s also been another beautiful bonus as a result of her work – the support from women and men around the world who are just a click away on the other side of the screen. Day and night – when we need a shoulder, an ear, or just someone to nod and click that ❤️ button of understanding even if they’re unable to respond at greater length.

We are a community of people who have the fortune of knowing one another through a very unfortunate heath situation. Breast cancer strikes 1:8, of which 40% will be diagnosed with secondary cancer. I probably sound like a broken record (showing my age here – raise your hand if you have ever owned an LP record or a 45 record). I’m sure you can all spit that statistic out like a bad taste from your mouths but we must raise awareness as to the seriousness of our conditions not just to one another but to those newly diagnosed, their caregivers, friends, families, and those who have left us isolated and sometimes alone to suffer on silently.

Not one is better than another – we are but a relatively small group of those who understand what the other is going through. Sometimes someone is lost to us – they die of metastatic breast cancer and we all grieve. Sometimes someone gets a No Evidence of Disease (NED) bill of better health and we all cheer. Although there’s a sadness that some of us admittedly feel when we aren’t’ close to NED and having health difficulties beyond the imagination of the “well” world we once belonged to and for that, we’re even grateful.

The blogs that Marie rounds up are many. I try hard to get my post in on Saturday night before I hit the sack to make sure she’s had a chance to read it. I feel like I’m failing myself if I do not produce one blog post a week. And read all of the posts of my friends, supporters and Marie’s round-up. Ironically, Round-up is a cancer causing weed killer that was ubiquitously used in the United States through the ’00s. It may have even caused some of our own cancers to appear. Mine unfortunately is a combination of high doses of stress over a short period of time, #densebreasts (read more on this topic from my friend @beingdense) that don’t allow mammography to separate the cancer from the tissue. It’s all one cloud of smoke in there. There’s better ways to see what’s up. I was not given the opportunity to have an MRI or Ultrasound or CT Scan because I was not told of my breast density. I’d have insisted I should think prior to having being diagnosed at stage four. De Novo – it should be De No Va – like the Nova an automobile with a most unfortunate name in Spanish – “no va” translates loosely to “won’t go.”

I won’t go gentle into that good night, either. I’ll write against the dying of the light until I can write no more. And I know sure as I sit in my bath of Epsom salts, apple cider vinegar and baking soda with a splash of frankincense for my neuropathy (try it it works!) with my iPad and new keyboard thanks to my honey who doesn’t show a lot of emotions over my cancer but presented me with this keyboard making my writing so much faster and easier for me to do. As sure as all that, I know that Marie will craft a post on Sunday in the UK – the usual and unusual suspects week after week. And that’s what the butterfly effect really means. One small move of the keyboard, one single word can change history forever. And I know we all have a goal in mind as we embark weekly or not as regularly or more regularly like @nancyspoint and Jo Taylor @abcdiagnosis.

There’s a few too many of us. But like butterflies we all change one another’s world just a little bit, as our wings gloriously fly for as long as they hold out. And I hope that’s a really long time.