A self portrait wearing a headscarf, blue hoodie, red-rimmed glasses, and a black kn95 filtration mask.

I hope this post finds you all basically well and enjoying some down time on this first Saturday in June.

Happy Pride!

I met with my oncologist on 5/27 to discuss the latest set of CT scans (taken about a week prior) and the super short version is that things are holding steady so there will be no change in current treatment. 

Since mid-March, when we made some drug adjustments in response to frustrating side effects: I am currently on two chemo drugs and two ancillary treatments meant to increase the effectiveness of the primary chemo. I am currently on avastin, leucovorin, and irinatican (chemo) infusions once every other week and a 46-hour 5-FU (chemo) infusion that I take home from the on-site appointment. The largest remaining cancer lesion on my liver is 1.7 cm in dimension with a few other, much smaller, lesion areas. My overall liver health (and other organ function) remains normal. There has been no further spread of cancer cells.

My next scans will be in early September, although I continue to see my oncologist once a month for symptom evaluation and I have blood drawn/check-in with the nursing team at every infusion. I am seeing a slow but steady decrease in neuropathy symptoms in my hands and feet, the painful redness that exacerbated that with every treatment cycle has, thankfully, been responsive to minor adjustments in drugs, and my hair is slowly returning (though I shaved it for summer).

We recently switched treatment days from Tuesday (with a Thursday disconnect) to Friday (with a Sunday disconnect). It’s less disruptive for home and work life for both me and Hanna, and allows me to take Saturday super easy rather than trying to work during my at-home infusion. Sunday has become a nice day to visit our old neighborhood of Coolidge Corner, near the BIDMC campus, and pick up fresh bagels at Kupel’s and visit the brookline booksmith.

Since April/May, I have been doing more on-site library work (masked, with colleagues and researchers also masking) and last week had my first EvuSheld antibody shot meant to strengthen my immune system against COVID specifically. At the urging of our library director, and with strong institutional support, I have pulled back to 100% remote work as COVID numbers rose in Boston during the past month. Hopefully we will see lower positivity rates over the summer and I can do more on site again. I am continually grateful at the support and flexibility both Elaine and my colleagues — as well as the institutional structure that is my employer — have provided throughout the past year as we juggle my immediate cancer care needs with COVID-19 risks and also the goal of keeping our public-facing reader services department operational. 

I’ve noticed a bit of a drop in energy and stamina during the past couple of months, as we pass the first anniversary of my diagnosis and hospitalization (followed so closely by Hanna’s surgery and then the precipitous decline in health of Christopher). It was a hard season, made harder by navigating all of these health events in the midst of an ongoing pandemic. It’s hard, some days, to feel like we managed all of that and not only is the pandemic a continued reality but I also have fairly relentless medical shit to deal with. We have so many more supports than people in similar circumstances and for that I extend endless gratitude. I am still learning to recalibrate my own bandwidth during recurring treatments and thinking about how to return not only to work but also to wider engagement in community — what is safe, or safer, during COVID and what do I realistically have the ability to follow through on. That is part of the task in upcoming months. 

A knitted gnome with a pink/yellow/turquoise knit cap, pink cabled hair, a brown nose and cream body.

I continue to enjoy our neighborhood walks; thanks to my n95 I have been a bit more comfortable in some of our local and less crowded coffee shops; and have recently been knitting a lot of gnomes. My mother-in-law suggested we leave some of them in the Arboretum to be discovered by other walkers and I like that idea!

Pink azalea blooms

In the meantime, thank you all for being present and responsive in various ways. I probably won’t write a full medical update in September unless changes warrant. Please know that we are hanging in here — and hopefully the early fall will bring a small, flight-free vacation to Vermont, and potentially a new kitten! We are looking for a companion for Teazle before she becomes even more of a diva than she already is, and have been told autumn is a good time for kitten adoptions based on local shelter patterns. Fingers crossed we will be welcoming a new member of the household before the year is out. 

In the meantime, you’ll find me regularly on Twitter (mostly politics) and Instagram (mostly photos). 

In friendship and hopes of a slightly-more-relaxed summer for us all,