New Resource for Advanced Illness; My Contribution

Jim Rosenberg is a nice guy and a good conversationalist. Jim is not one of these shoot the shit, “how’s the weather?” kind of conversationalists, but more of the Quaker, “how is it with your soul” types. Jim is the conversationalist who actively listens. He is not waiting for his to turn to speak. Rather, he waits to rebound spoken words back toward the speaker in such a way that helps you realize there is something hidden beneath your spoken words that you didn’t realize was there, lying prone beneath the noise, when you spoke them. Jim teaches you about yourself while he interviews you. Jim is appreciative of your time, but it’s often the partner on the other end of the phone (or Skype video call) that most values the experience.

In short, it is a pleasure to speak with Jim, and that pleasure was mine earlier this month (March 13, 2017), when I interviewed with Jim for his innovative resource targeting patients and caregivers of folks facing advanced illness and the end-of-life. Jim’s resource is called the I Know Something Project (IKSproject.com), and though in its earliest stages of development, the powerful impact of a mature and fully fleshed out product is not difficult to imagine. Jim and his late wife Amy radiate love. If you wonder how it is I use ‘late-wife’ and ‘radiate’ (in the present tense), in the same sentence, you need only connect with Jim to see Amy’s light and their love shine through Jim’s soft eyes and focused gaze.

 

Amy’s passing left both Jim and Amy feeling overwhelmed, cast from the life they knew and navigating seemingly uncharted waters, yet as Jim observes, everyone faces death, why should there be such a void of helpful content? Enter the I Know Something Project:

The “I Know Something” (IKS) community captures short, personal video stories from people who have faced the hard moments in life that we don’t talk about every day. It’s about giving voice to every one of us and all we know. We then add links and reflection exercises to the stories to make it easier for everyone to think about their unique situations and specific needs. So in our own time, at our own pace, and in our own way, we can figure out answers surrounded by others who have been there before (“About this Project.” I Know Something Project. https://iksproject.com/about/).

That Monday afternoon in March, Jim and I talked and laughed for over two hours while I rehearsed my life over the past ten months, battling terminal brain cancer. My first edited “story,” titled “Choosing Quality of Life Over Treatment (link)” is now available on the IKS website. Those who know me, you’ll recognize my familiar, humor-driven, yet thoughtful tone, and I hope now you’ll know something about the person on the other side of the camera, Jim, a nice guy, and a good conversationalist.

 

Please pass the IKS project on to others who may find the resource of great value, and check back for new stories to be added all the time.

If you would like to share your story, let Jim know through the site. You can also reach him to talk about any question at jim@iksproject.com.

Direct link to my edited story: https://iksproject.com/choosing-quality-of-life-over-treatment/

Scan Day!

At every occasion I’ll be ready for the funeral. Even if we read too much into the meaning, no matter, turn it up as you read this post. Here are the lyrics.

Welcome to scan day, everybody! Our every-eight-week-installment of what is happening inside Adam’s head. I get to wear scrubs, the techs are friendly, I see my neuro oncologist and his terrific nurse coordinator, and I get a Starbucks after; sometimes a pastrami on rye with mustard. What’s not to like?

Keep the following acronym in mind today, friends: PFS–progression free scan.

Watch the fluids, not too much coffee, I’ll get a bag of IV saline, contrast dye, and no bathroom  breaks for 30-/40-odd minutes while high frequency magnetic resonance aligns the proton spins in my tissue to capture radio images of my brain. Hey, hey, enough with the science.

It’s like this: *bang bang bang bang*, and then we get pictures.

Lie still.

Last night was the first-Sunday-of-the-month #BTSM (Brain Tumor Social Media) chat. Topic: Death and Dying. We enjoyed engaging with patients, caregivers, palliative care docs, and hospice providers. I look forward to these monthly discussions to connect with my community–and even though we’re conversing at 140 characters, I have developed meaningful relationships through these chats.

The topic, death, dying, advanced directives, and so on will show up here soon enough. For now, the key take-away from last night is that preparing for end-of-life is a conversation that should occur  openly and often between patients, loved ones, and medical teams.

At every occasion, we’ll be ready for the funeral, and preparing ourselves helps us live into every moment, seeking meaningful relationships and pastrami sandwiches.

Cheers- AH