A few updates from the Clutterbuck-Cook household this first week of May …
It’s been a rocky road, including one re-hospitalization for an emerging post-surgical infection, but Hanna is slowly making her recovery from surgery and this week we have been able to take slow walks through the Arboretum and Roslindale Village square, which feels like a small return to normalcy. The blooming things are giving it their all this spring and it really has been nourishing to get out and see the flowering trees and shrubs and flower beds a little more regularly than was possible for much of April.
All of the food and gift cards and well-wishes that people have sent to us since the cascade of health crises began in early March have been so generous and are supporting both of us in our healing — it’s been such a relief to have meals delivered and restaurant gift certificates so that we can eat good food without the burden of meal planning, which neither of us have the bandwidth for right now. Magical! Thank you all.
We’ve also been gifted with yarn, and gift cards to purchase yarn, which has brought abundant color into our household and enabled me to embark on some projects to learn “slip stitch” or “mosaic stitch” knitting — a technique for knitting two-color patterns. I’m working on a shawl currently with a red background and a pink-to-charcoal gradient that I’m super excited about (progress photo below). It’s my project for chemotherapy days, which are long and boring. It’s nice to keep my hands and mind busy while I’m being infused.
Returning to Work
Let’s talk about work and illness.
One of the first things I did when I was hospitalized back in early March was quit everything. I mean everything. I handed off everything I was doing at my primary workplace. I told every professional group I was involved in that I would be absent until further notice. I dropped every book review I had pending (with notice to my editors, obviously). I paused every side project I had going, like Persistent Stitches and #QueerJoyGiveaway and the Ida B. Wells biography manuscript, and volunteering with a local mayoral campaign. It all went on indefinite pause.
I returned to work on April 26th after having been out on full medical leave (due to hospitalization, then surgery) since March 4th. I was able to take that time off thanks not only to my workplace policies but also to the Massachusetts Paid Family and Medical Leave program which compensates workers who must take extended time off for reasons like mine. It was a pretty seamless process to apply for and be granted benefits — and I
I’ve set some ground rules for myself on working during chemotherapy. They include:
- Not taking on any professional obligations (whether volunteer or paid) outside of my core job at the Massachusetts Historical Society. Even things that I thoroughly enjoy doing, and plan to do again, like book reviews, will remain on hold until chemotherapy is done.
- Not working outside of my usual work schedule (9-5, Monday – Friday) even if medical appointments or ill health mean that I can’t work for a chunk of the work day.
- Not doing work while at chemotherapy infusions.
- Working entirely remotely while immunocompromised, which also allows me to drop things in order to lay down and rest when sudden fatigue sets in.
I’m extraordinarily privileged in that my supervisor and the leadership of my institution are 100% in support of my plan to put my health first, and trust me to judge my own bandwidth and to be up-front about what I can and cannot do during this phase of treatment. I also know that, if working even within these parameters becomes difficult or impossible, I can downshift to partial or full medical leave again and transition back to state benefits for a period of time. It’s also weirdly fortunate that this health crisis has coincided with our institutional response to the pandemic; we are still physically closed to the public so my inability to serve at the reference desk or cover a reading room shift is less of a burden on my colleagues than it would otherwise be.
No one should feel pressured or be obligated to work while dealing with a serious health condition; everyone should have access to the kind of security and flexibility that I have been afforded to make participating in the life of my institution possible even while I am not feeling my best. Do what you can in your own workplaces, communities, and political contexts to get us closer to that reality!
Liver Biopsy Results
Unfortunately there were no happy surprises to come out of the liver biopsy that I had on April 16th. They did find that cancer cells matching the cancer cells from my colon have migrated to my liver. Thankfully, my liver continues to function normally and the goal is to combat the cancer growth there with the current chemotherapy regimen; the first assessment of progress will happen in early June after four treatment cycles.
In the business of finding silver linings right now, I’m relieved that the cancer cells in my liver were detected and diagnosed now — because without the sudden colon cancer hospitalization and surgery, as long as my liver continued to function unimpeded I would have had no reason to seek out medical attention to diagnose liver cancer. And things could have gotten much, much worse before treatment.
Now that Hanna and I are fully vaccinated (we received our second dose of the Pfizer on April 26th!) my parents — also fully vaccinated — are driving out from Michigan to spend about three weeks with us in mid-May and early June. We had discussed the possibility of a visit to coincede with Hanna’s surgery and my first round of chemotherapy, since they wanted to offer practical support, but we all felt strongly that we should be vaccinated before travel and co-habitation. So now we have the chance to look forward to welcoming them to late spring in Boston, hopefully when both of us are feeling a bit less totally flattened by the past three months, and they can help ease some of the logistics of transportation and errands and cleaning at the point when Hanna transitions back to work following her own medical leave in the midst of my continued chemotherapy treatment. For obvious reasons we haven’t seen them since October 2019 and we are looking forward to a low-risk reunion!
I’ll probably not post another update until mid-June. Hopefully, things will continue on a steady and healing path between now and then. Thank you to everyone, near and far, who continue to send healing thoughts, words of encouragement, cat photos, flower photos, and other myriad kinds of support for me and our family as we weather this difficult season.