Video: ramblings of a crazy woman with metastatic breast cancer

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Ilene’s Car Rant on Life with Metastatic Breast Cancer

Finally I’m posting video, via YouTube, as a nice palette cleanser from all the writing on the Cancer Bus. Also on the calendar coming up concurrent with a poetry chap book I hope to publish between Thanksgiving and Christmas this year.

The sarcasm of “cancer bus” as a serious blog title at first seemed to take down what might feel like another uppity cancer blog (in my naive early cancer days) by toning it down with humor just a shade or two. But no longer does the name of the blog carry the deep connection I feel for writing and the readers who I feel truly grateful for and who deserve better.

Precious time to think, even aloud, probably’s one reason I love driving long distances alone and without interruption. It’s especially important when we’re faced with life changing decisions; allowing us to clear the mind clutter and to find our own true opinions unfettered.

Changing my name?

I had a big decision to make as in where and with whom and how will I spend my final months of life on earth because my current situation will only land me in an assisted care or hospice. Not what I want although it’s perfectly fine if that’s the choice that you make or circumstances make for you.

Who I will be with is my ex husband Harry. He has offered generously and without much need for discussing it. He stepped up with a resounding “abso-fucking-lutly” before I could get my whole question out of my mouth. He looked at me on our FaceTime call as if to say it’s been there this whole time. All I needed was to say the word. And so I did.

What I needed to do was draw my boundaries at home as far as my bizarre relationship grows more bizarre with my current husband. Where I will live is in Harry’s house overlooking the ocean in the Philippines. I will not go without my cat Simon. After I die he will be taken care of by Harry. When I will go is when there are no more treatments available to me and no clinical trials to throw the Hail Mary pass through the uprights and score a final few more years (or months.)

But as I’ve seen this past year, the end can go very quickly. But I can move quickly if I’m prepared and I can count on Harry. I need to get my passport up to date immediately since I have another international trip to make in the very near term – as in this spring.

To finally be, finally.

When I get to the Philippines I won’t need much. And while if it’s possible I’d like to go the pine box route next to a sapling tree that I can nourish through the soil with a small placard as I’ve discussed in prior posts, it won’t matter where I am buried.

I’ll be physically gone from the world separated from my spiritual self. Who may or may not become a part of the great spiritual or soul energy that recollects as matter in the universe. What a beautiful place to finally be, finally. But that’s speculation. We all speculate as to what happens after death. No one knows for certain. It’s the great democratization – death.

I’m not afraid of it. I was afraid of how and where and in whose company but no longer. I realize here I’m only going to become a burden and there a welcome human being. As it stands legally although Harry and I have been divorced many years, he’s still legally my family and benefit from my social security.

For helping me in the great transitioning I think he should benefit too.

There’s also alternative and adjuvant treatments as well as novel treatments available there, too and I have my eyes slightly peeled for what that might look like. He knows how to be an expat and his father still receives his benefits although he’s over there.

I had told my current husband Craig two things – one I wanted to do and one I wanted not to do. At first he promised me both. In his OCD inspired ongoing depression, his memory apparently of both things that, for my own reasons, are vastly important to me – 1. See and spend time in the northern lights and 2. Don’t die unmarried.

We can’t be wed for my medical benefits and social security to stay put. And in light of having to be bankrupted myself I saw no unselfish reason to remain wed on paper. He’s still technically my husband after living as married for over 14 years but I now just want to be in a loving environment with my physical and medical needs attended to instead if having to cook and clean for a huge houseful and a person who’s stopped treating me like a wife.

After a few trips in America and one to possibly two to Europe I’ll have seen and hugged all those I wouldn’t want to leave this world without having done. Then I’ll start the great give away then I’ll go away for good. I figure 2-3 years with a contingency plan in place just in case things take a turn before I was done. But this all takes at first THINKING then ENQUIRING then PLANNING then EXECUTING. I’ve done one and two. It’s now in the short part of the preplanning phase of execution: See people and take trips.

What’s on your mind when you drive long distances?

What’s on your playlist?

Here’s a few of my favorite songs. I know all the words to every one of them. And in my little world in the privacy of my car I can sing and mess up the words and there’s no one around to critique or correct a few mistakes- and life’s full of mistakes, it’s how gracefully we admit to them and that we forgive ourselves that makes all the difference.

  • Yellow Brick Road – Elton John
  • Wish You Were Here – Pink Floyd
  • Play the Game – Queen
  • The Song Remains the Same – Led Zeppelin
  • Closer to the Heart – Rush
  • All Apologies- Nirvana
  • A Day in the Life – Beatles
  • The Chain – Fleetwood Mac
  • Interstate Love Song – Stone Temple Pilots
  • Hello, It’s Me – Todd Rundgren
  • The Joker – Steve Miller Band
  • Year of the Cat – Al Stuart
  • Father and Son – Cat Stevens
  • Fearless – Pink Floyd
  • Rain Song – Led Zeppelin
  • Kashmir – Led Zepplin
  • Are Friends Electric – Gary Numan
  • Live and Let Die – Paul McCartney & Wings
  • Killer Queen – Queen
  • Time Stand Still – Rush with Aimee Mann
  • One – Aimee Mann
  • Norwegian Wood – Beatles
  • Season of the Witch – Donovan
  • Kiss them for Me -Siouxsie and the Banshees
  • Comfortably Numb – Pink Floyd

That’s not even 1/4 of my current playlist. I just got tired of typing quite honestly.

Share yours in the comments – I’d love to know about your music. This is ongoing for me I make new kinds of old songs all the time. Music has been part of my life since I can remember.

So this becomes memory as all trips do long or short. And on that day I had a feeling of great relief that at least for a while longer, my life would be preserved with as best possible quality. Overseen by professionals who care about me as a human being with the same feelings and questions as their own families would have in the same circumstances.

And that’s the best care one could ever hope to get.

12 comments on “Video: ramblings of a crazy woman with metastatic breast cancer”

    1. And video input with you in my mind as we couldn’t talk that day as promised. You and mister mittens 🐈‍⬛

  1. We definitely need to connect sooner than later. It has been so long since I’ve seen you. I love your plan even though the thought of losing you is almost too much to bear. You were so influential in helping me find myself and I will always be in your debt for that. I miss our shopping trips and treasure hunting…love you…

    1. I love you
      leggy
      Jacques
      Jackie
      For whomever you choose to call you you’re still my beautiful friend with whom I’ve been through about 6 plus years of this near seven year beast with. Meet me home or let’s find a good outlet mall somewhere in between although the one close to here in Folsom is awesome!

  2. Even though you talked to me about this, reading it in print has thrown me. Going away and going away are the same, but I can’t wrap my head (or heart) around it. Don’t go away too soon. It’s all too soon. ❤️❤️❤️

    1. My intent is to be around and a unicorn a good long time, but unfortunately with things as light as air and flying up into it like helium one day thinking I can make an airtight plan on my deathbed is like getting Simon into a bath – it’s not going to happen unless anesthesia is involved and I’m off in a dreamland where it doesn’t matter much.And of course plans have to be made around a lot of uncertainty. So while I can still be certain of what I want and what I don’t want I can create that rare circle of protection around me and not have plans made wrongly and not to my liking for me, As Frank Ostaseski says in his wise and worth listening to in his own calming voice The Five Invitations Invitation 1 – dont wait. And thats the best advice Ive ever heard. I promise I ll stick around as long as you promise. Deal? ❤️❤️❤️

    2. Kristie as we both know it’s all too soon thus our trip is of all the more importance and I suppose built into these words sit that trip about 6.5 weeks away on the dock of a bay just waiting for us ladies to arrive when we do and lean into one another even closer- it’s oh so strange how putting it on paper makes it so real.
      I love you like a sister.

  3. Listen to “Wouldn’t it be nice” by The Beach Boys. This song is the expression of pure joy which bypasses your brain and goes straight to your heart.

    1. It’s in my big playlist along with Sloop John B. I love The Beach Boys pure genius pure joy. Thank you Rick! Wish me luck today paracentesis #17. The new meds are having a positive effect though! Much love and good to see you commenting here🔝

  4. I can picture you relishing in your freedom on the open road, listening to your favorite music.

    Sounds like you’ve developed a good plan. May far greater time elapse, with pleasure outweighing pain, before you need to enact this plan.

    Hugs to you, Ilene.

    Annie

    1. Plans before it’s too late especially with terminal illness is a policy I’ve had since true acceptance this will end as all life does just earlier for me. I’m lucky to have a good friend in my ex hubby. He’s a good human.

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