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Time to start healing

What I posted on April 11, 2019:

My belly is ticking. I can literally hear my pump from INSIDE MY BODY. It is wild, it’s like I am a cartoon character who swallowed a watch!

I’ve had the pump pushing chemo since Monday and am pleased to report almost no side effects given that the treatment is so targeted. (I’ll have systemic chemo again in a week and a half, so I’m not totally off the hook. But I’ll take 50% chemo side effects over 100% any day of the week!)

After two weeks of chemo, the pump needs to be flushed with saline, and I wanted to do that locally. Northwestern doesn’t have experience yet with this new pump (the old Codman pump that Dr Kemeny helped to develop was discontinued last spring), so Medtronic is sending a rep to train the nurses there next week, and the rep will come back to oversee my first pump saline flush the Monday after Easter.

I’m excited for Northwestern to have this exposure; the Midwest deserves to have a well-developed pump program to broaden access beyond those who can fly to NY for treatment. I figure it’s just one more reason for me to make a full recovery: hopefully a local success story will motivate the NW oncology team to commit to developing a real pump practice here!

Tick, tick, tick.

Looking back today:

I’m three and a half months into this year-long Substack—and I’ve covered six months of a four-year journey. My content calendar deliberately spent more time on the first part of my experience, because physically I was experiencing so much, and I wanted to capture that detail for newly-diagnosed patients.

Moving forward, I’m going to starting to skip some of the posts that are primarily physical reports and focus increasingly on those that share what I was experiencing emotionally. (If you happen to be a patient or anyone else who’s curious about my post-surgery experience, you can find that content on my blog, We Are All Made of Stars, here and here.)

Our time post-surgery was spent in the Bowery, in the pied-à-terre generously loaned to us by my boss’s boss. My belly was so swollen I had to purchase new pants; my back so sore from the hospital bed that Per’s sister had to give me a chiropractic adjustment. Per had to continue working remotely, so my mother came into town to force me to walk around—on streets lined with shops filled with adorable clothes that would not fit over my abdomen. Walking helped to build up my appetite, as did discovering Prince Street Pizza.

My healing went so well that MSK gave me my first pump chemo before I left New York—and my celebration in this post about 50% side effects thanks to pump chemo turns out to be short-lived. That’s because nobody made clear to me that (with the exception of the initial treatment) pump chemo is given IN ADDITION to systemic chemo; not in place of it.

If you’ve experienced chemo yourself, you can appreciate how brutal it was to realize my error—and a painful lesson in how important it is that a patient plays an active role in understanding and directing their own treatment.

The importance of self-advocacy sinks in further the day I have a conversation with a nurse who had previously worked with Dr. Kemeny in New York. She shares that when she arrived in Chicago, she asked why her new hospital did not have an HAI pump program.

“Because patients don’t ask for it,” is what she reports having been told.

My eyes widen. What percentage of patients walk in with a stage 4 diagnosis knowing what to ask for?

None of the three major cancer centers even mentioned the pump to me—in spite of the fact that my widespread liver tumors made me a perfect candidate, and in spite of the fact that each of them had a handful of patients who were being treated with a pump (even if by a different doctor in the system).

If a major infection hadn’t paused my chemotherapy, I might have put off visiting MSK for even longer—not realizing that the pump works best when it is leveraged at the beginning of treatment.

Today, treatment with an HAI pump is much more common; patients are much more connected via social media groups; and my sense from discussion across the various support groups and boards is that it’s much more likely to be presented as a treatment option when patients are first diagnosed.

Still, my experience serves as a reminder that doctors are human; and as such, may be apt to recommend what they know best. That, coupled with your understanding of your own body, may be why self-advocacy is one of the data-driven factors that is associated with patients surviving against the odds.

And probably, a good practice to adopt in general.

Which brings us to the close of today’s post, which just happens to be one I’m writing on the first day of 2023, as social media is filled with annual wrap-ups and commitments for the year to come. Strive for Five was born as a yearlong project—a commitment I made to myself to write twice a week. The idea was to create a structure that would force me to get words on paper in anticipation of writing a memoir—and develop a platform of readers large enough to convince a publisher to publish it.

The former has worked better than the latter: I’m pushing out two “shitty first drafts” a week—but with just over 800 readers, I’m not even at 10% of my 10K goal; and between Substack’s increasing focus on pushing paid newsletters and the intimacy of my subject material, I’ve realized I may never accumulate that many readers.

But increasingly, my original objectives are receding into the background; they matter less and less.

Because the real value of this exercise is how the lessons of my cancer have further crystalized for me in their retelling. It’s illuminating who I was, who I have become, why I’m happier than I was—and what may be next for me as I continue to better understand my personal purpose.

As you make your resolutions this year, you might want to consider whether there is a thoughtful yearlong project that calls to you. It doesn’t need to be a Substack. One of our friends posted a poem daily on Instagram for a project called “A Year with Mary Oliver.” It was beautiful and affirming.

You could decide to start a year of gratitude, jotting down just one thought a day. Or maybe something else completely. I suspect almost anything that makes you think daily could be a filter for better understanding yourself—and maybe you’ll find, like I did, that it’s therefore a commitment worth keeping.

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