It’s been about six months since my last update in June. The tl;dr is that I still have cancer and that my oncologist has just switched me to a new drug regimen that should take less of a toll on my body overall and potentially be more effective at combatting the particular type of cancer that I have. We will be doing this new treatment for three months before imaging again to determine its effectiveness. So I will likely post a next update at some point in late January/early February.

The good news: The cancer has not spread from my liver and my liver continues to function normally as do all of my other organs. I have no pain or really any symptoms of the cancer itself — just the chemotherapy that I have been on, in various iterations, since April 2021. The cancer also seems to be slow growing: The areas we have been monitoring have stopped shrinking but shifted up and down in size incrementally over the past nine months or so (we’re talking in fractions of centimeters with the largest area being about 3cm in diameter). So we have time to explore different combinations of drugs and other treatment options.

In September, Hanna and I met with an oncologist at the Dana Farber research center here in Boston, a close colleague of my regular oncologist, who is involved in clinical trials. This review of my case was to determine whether there are any clinical trials for which I am currently eligible. Unfortunately, my cancer cells are “weird” (the highly technical term they keep using) in terms of their specific mutations, so I was not a match for any current trials. However, they now have my genetic profile in their system and are in close consultation with my oncologist should any trials open that look promising.

In the meantime, we made the decision this week to switch from the chemotherapy I have been on, which has become less effective in combatting cell growth, to a treatment called immunotherapy. Immunotherapy “takes the breaks off the immune system,” encouraging your body’s own immune defenses to attack the cancer cells which normally disguise themselves as cells the immune system can ignore. This therapy has been used successfully colorectal cancer that has certain genetic deformities, something called “mismatch repair-deficient” or “microsatellite instability.” In the latest genetic testing they did for me, I came back with high microsatellite instability. This makes me a good match for the treatment. A write-up of a recent clinical trial involving patients with rectal cancer can be read here. All of the patients in the study have since been cancer-free for two years post treatment.

The other benefit of this treatment is that it has fewer adverse side effects, meaning that I should start to feel better on a daily basis and have less of a roller coaster in terms of symptom management than I do with the fourteen-day chemotherapy cycles. In addition to fewer side effects, the immunotherapy infusions are shorter and done entirely at the hospital, meaning that I don’t need to go through the rigamarole of bringing an infusion pack home for 46 hours and going back to be “de-accessed.” And the cycle is 21 rather than 14 days, giving me alonger period to recover between infusions.

While it’s always a bit scary to change up treatment plans — especially when the reaso is that the old path is no longer effective — I am feeling hopeful about this new course and looking forward to simply having more energy and fewer uncomfortable symptoms as we take a break from chemotherapy. I had my first infusion was this morning and I am feeling pretty normal rather than wiped out with a handful of annoying side-effect symptoms to manage.

Fingers crossed for an easy end to 2022 and some good news early in 2023.

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. 

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!

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, 

Anna

I’ll lead with the most succinct version of my latest news: The January set of CT scans show slowed, but still decreasing, reduction of the remaining cancer in my liver, and no new areas of concern in my abdomen. According to my oncologist I have had an “amazingly responsive” reaction to the chemotherapy and will continue on this path as long as we get positive results. 

Practically, this means I am on a two week chemotherapy cycle for the foreseeable future. I have a chemotherapy infusion on week one (a three day, mostly at home process) and a “normal” week two with no medical treatment. Then we repeat the process. I will do another set of scans in early March, right around the one-year anniversary of my hospitalization and surgery, and again see where we are at.
This is a much different frame for thinking about cancer than I am used to — so many of our cancer narratives are either you’re in crisis / dying or you are in remission. This is more of a chronic disease model. I am certainly not complaining, since without modern medicine I would have died last year. But it does require shifting from a sprint to a marathon mindset, and that I adjust to the new rhythms of life in on-going treatment. 

The chemotherapy I am currently on is much milder than my initial regimen and the side effects are minimal … though I am still adjusting to what my new normal energy level and cognitive load is. Naps are a bigger feature in my life than ever before, and 1-2 mile walks often feel effortful. I fade faster in the afternoons than I am used to. But I have very little nausea, have regained the weight I lost over the summer, and my hair is starting to grow back. Week two often feels pretty “old normal” in terms of daily life (pandemic withstanding). 

The most difficult symptom I am coping with right now is peripheral neuropathy, a side effect of one of the drugs I took over the summer. This means I have numbness, tingling, and some pain in my hands and feet due to (we hope) temporary nerve damage. About 85% of patients who experience this symptom enjoy a full recovery; in the meantime there is little to do beyond the basic self care of sleep, food, exercise, and patience. It’s frustrating because typing/writing and knitting/stitchcraft are two kinds of activities that I do with my hands, and do a lot, and are slow right now. Handwriting is often out of the picture. So I have not been able to do things I wanted to get to this winter, like binding a quilt (hand stitching just isn’t possible) and catching up on thank you notes. If you haven’t had a note from me, I promise it is still on the way when my dexterity improves!

The omicron variant of COVID-19 is also scary, particularly for folks like me with a compromised immune system. I am so grateful that my workplace (as an institution and as individual colleagues) continue to be supportive of my extended work from home arrangements. And when I must be indoors with others — errands, appointments — I have upgraded to wearing kn95 or n95 masks. The studies on the efficacy of vaccines in supporting an immune defense even in those who are immunocompromised are encouraging, but we remain cautious — particularly with the cases as high as they are and hospitals stretched thin.

It’s hard to believe we are reaching the one year mark with this cancer situation in the midst of the still omnipresent pandemic … but here we are indeed. I’m so grateful for all you have done to make the past ten months easier for Hanna and me. I’ll circulate another update in March when the next set of scans are evaluated. In the meantime, know that we are hunkered down to avoid omicron and hope you are all doing the same. 

I had my six month check-in with my oncologist today, to go over the results of my latest CT scans and treatment plan moving forward. Six months was the rough estimate for how long they would keep me on the aggressive 4-drug infusion regimen we started in April. This turned out to be an accurate prediction since my final (12th) infusion was cancelled at the end of September because my blood platelet count dropped below the threshold where they authorize treatment.

Even with the cancellation of that final infusion, the last set of scans — taken October 5th — show a continued and substantial decrease in the size of the areas they are watching in my liver. This is really good news. The largest area has dropped from 3.8cm before start of treatment to only 5mm (roughly 1/8 the original size). That is a 50% decrease since the previous scans. Other areas have become too small to show up on the scans. So the aggressive regimen over the summer really paid off.

The challenge, as I wrote in my last update, is that I am not currently a good candidate for surgery, given where the areas of disease remain. The multidisciplinary treatment group my oncologist belongs to, and consulted last week, agreed with this assessment. So chemotherapy remains the best option for me during the next phase of treatment. I’ll continue to do twice-monthly infusions for at least the next three months before we evaluate again. The silver lining is that I will only be on two of the four drugs during that time and the two we are eliminating had the most onerous side effects (Irinotecan and Oxaliplatin). I completed the single on-site infusion (Leucovorin) in about an hour this morning and feel pretty normal. Now I’m just hooked up to the take-home infusion (Fluorouracil, or “5-FU”) for the next 46 hours, which — while logistically a bit annoying — doesn’t typically make me feel crummy. So hopefully my day-to-day energy and routines will be a bit more stable with a less intrusive treatment regimen — yet with continued progress on reducing the cancer cells. My oncologist will also consider it a successful intervention if they keep the cancer spots from growing; all of my other markers for healthy organ function remain stable and good. We will continue to assess how the drugs are working and add/remove things as necessary in addition to considering whether surgical intervention becomes a viable option.

While not full resolution/remission news (which would have been GREAT but which, given the last assessment, we didn’t expect) this is a positive trajectory overall and I am glad to have a sense of what the shape of the next three months will be like in terms of daily and weekly routines. Thanks to the support from my colleagues, I continue to work remotely and flexibly from home to minimize COVID-19 and other exposures while I am immunosuppressed. I am also a candidate for the booster shot which I am working to schedule at some point in the near future.

We are grateful for all of the ways your care has made this rocky road easier to handle. My parents are planning to visit again over Thanksgiving and we look forward to our typical slow end-of-year holiday season where we take some extra vacation time to reset as we look toward the beginning of a new year. I hope all of you have some holiday plans to look forward to that suit your own style and COVID situation. 

Last Tuesday was my ninth chemotherapy infusion and we met with my oncologist to discuss the results of the latest CT scans documenting the progress made over the past two months. Progress is, again, good. “Significant,” in fact, according to my doctor. The largest lesion on my liver — which in March was 3.8 x 3.8 cm in diameter has shrunk to only 1cm! The other two remaining areas of concern are smaller. There is also nothing new for them to monitor. This is all excellent news. I will continue with the next four chemotherapy treatments as scheduled and we will meet again in early October to determine where we stand. 

The biggest hurdle at the moment is that the remaining areas of disease on my liver are not clustered in one place but disparate, making surgery something that is not a straightforward solution. My oncologist is going to present my case to a multidisciplinary team that she belongs to here in Boston, from which she is hoping to get some suggestions other than chemotherapy, for dealing with the remaining disease.

Sans surgery, I have the option to continue with a (likely less aggressive) chemotherapy regimen as a sort of maintenance routine beyond this initial six month window, particularly given that I have been able to tolerate the treatment and the cancer cells have been so responsive to it. What that would look like is not yet clear since we are waiting to see where this third chunk of aggressive initial treatment gets us. I will have my next update for everyone the week of October 4th.

Thank you all for your continued care in so many ways.

Hanna and I met with my oncologist today to discuss the results of my first four rounds of chemotherapy. We received very good news! The chemotherapy is doing its job: The two largest cancerous areas on my liver that they are watching have both shrunk by 50-60% and many of the smaller troubling areas have disappeared entirely. 

While I am still very much in the midst of active treatment, this indicates that the chemotherapy regimen I am on is working effectively. The next step will be to do another four rounds of treatment and repeat the scans to see what further changes result. Further down the road, the treatment plan may change as (hopefully) the cancerous areas become more isolated and easily targeted. 

Chemotherapy is not what I’d call a fun way to spend my time, but my body is mostly tolerating the cycles without super disruptive side effects. I’m grateful to everyone in our lives who’ve come together to support us and make it possible for me to accommodate treatment — and the ups and downs that come with it — while also participating in other life activities like work and crafting and being out in the wider world (tentatively; still masked …). 

Thank you, thank you.

In a couple of other medical-adjacent updates, Hanna’s recovery from her own surgery continues smoothly and she has returned to work as of June 1st. Christopher has also seen an improvement in his health following a dental appointment at which he had eighteen (!!) teeth removed. As his mouth heals he seems much more comfortable and is even exploring the possibilities of human laps. Our household is on the collective mend.

I was sharing my coffee shops analogy for social media spaces, boundaries, power, and negotiating our personal digital networks recently and the person I was talking with asked me to write it down do they could, in turn, share it with some people they thought it might help. So here it is.

I should acknowledge up front that I owe a lot of how I think about social media to scholar danah boyd. She’s brilliant and if you are feeling overwhelmed or unsure about navigating your online spaces I found that her It’s Complicated: The Social Lives of Networked Teens (Yale Univ. Press, 2014) was super helpful, even though I’m not a teenager.

It’s also important context that although I have been on social media 2.0 type networks since they truly emerged in the mid-2000s I have never been a major player. My public reach has been modest and for whatever alchemical reason born of intersecting privilege and chance I have never had major harassment issues despite being a queer woman who says a lot of stuff online. So my coffee shop analogy is very much about navigating a more interpersonal digital public where many or most of those you interact with on platforms like Facebook or Instagram or Twitter are people you also know (or knew) in some capacity offline: at work, at school, at church, in the neighborhood.

A few years ago, the new president of my library decided she would make a Twitter profile. Our previous leadership had not been that into social media but my institution has a couple of popular Twitter accounts and I was involved in helping to run one of them at the time. So I was part of our president’s orientation to Twitter etiquette and norms. And at one point, early on, she asked my permission to follow my personal Twitter account.

The first thing I did was thank her for asking. My account is not locked. It’s always been tied clearly to me, including the me that works at the Massachusetts Historical Society. I do follow and am followed by co-workers. I interact as me with our institution’s social media presence. Many bosses would see this as fair game, no permission required. But she asked for my permission. And while I think she was probably surprised when I asked to think about my answer she accepted that request graciously as she did my final answer which was: no.

And the coffee shop analogy was how I explained my “no”.

Imagine your favorite local coffee shop. One a wide variety of people in your community (however defined) use. One day you might meet a close friend for lunch. Another you and two colleagues grab coffee. On Saturday you and your bicycle crew or games night group meet up. While you’re at your table with your chosen mates for that particular visit, a myriad other visits are burbling along in that same space. You might overhear some amusing tidbits. You might drop by the table of an acquaintance on your way back from picking up your coffee and ask after their foster kittens or admire a new outfit or whatever. But you haven’t been automatically invited to plop down at they table of any group in the shop and weigh in on their conversation just because you bought a latte at the same place. And they aren’t entitled to that either! Maybe you’re having a conversation about writing erotica with your friend who also writes fic. Your boss happens to stop by for lunch. It’s fine if they wave from the queue or probably even stop by to say hi on the way to their table. It would be weird and uncomfortable if they insisted on sitting at your table every time you and they crossed paths at the coffee shop no matter who you were talking with and what you were talking about.

This is, as an aside, why I don’t follow current co-workers whom I supervise directly (have power over); I also don’t pay attention to if they follow me or not (they are free to do so). Power has a role here. Especially if you are in a context where you might need to decide about following/friending people you have power over IRL (as their teacher, professor, therapist, pastor, boss) have a personal policy about what you do in general and always make saying no a meaningful option for any person who may worry that not giving you access will make them vulnerable.

So when you’re thinking about being online in a social media environment, and responding to interactions from those in your social networks — from friend requests to a Facebook post response to the appearance of someone in your Twitter thread — it could be helpful to think about your interaction in the context of a coffee shop. Your Facebook post, your Twitter timeline — that’s your table at the cafe. You get to decide whom you invite to that table day to day, and what you make visible at that table to a wider audience. Some conversations might be more open than others; maybe you’re purposefully setting up a table to sign people up for an activity or maybe you’re having a long catch-up with a close friend. Those are two different kinds of table uses. The entire coffee shop doesn’t have a right to access your table, every table, and plop down to participate in every conversation.

You have tools (imperfect, usually, but still available on most platforms) to help you signal and manage which tables are more open than others. And if someone intrudes on a table where you don’t want them it’s okay to disinvite them. I often acknowledge with a digital wave of some kind (a heart, a like) that someone I know has interacted with a photo or an update I’ve posted — but don’t feel the responsibility of responding at length to each and every interaction. I’ve blocked rude and noisy strangers, immediately and freely, who treat my table at the coffee shop like because I’m sitting in public they can invite themselves to have their morning coffee in my space: Nope, sorry (not sorry). My timeline isn’t for you, no matter how public my profile is. Dudes on Instagram who think they’re gonna get some sort of private chat going with me (very visibly gay married?) are summarily deleted. Marketers who think my cat photos should be monetized instead of enjoyed by friends have their comments deleted from my posts. Your table at the digital cafe is yours.

Just like in offline life, some of those interactions are likely to be delicate or fraught — there’s gonna be a colleague who thinks they’re closer friends with you than you do, or someone from church who is simply more social and would invite every person they knew who stopped by the coffee shop to their table. But think about how you navigate those situations in your offline interactions and you’ll maybe be surprised how many of those offline tools and intuitions can be mapped from offline to online spaces. The ethics are not wholly a thing apart.

Anyway — hopefully that analogy helps! And hopefully someday we’ll be back to those cozy, eclictic coffee shop afternoons where I can go read my book and write and wave to the occasional friend who swings by for their afternoon pastry.

A few updates from the Clutterbuck-Cook household this first week of May …

Hanna’s Recovery

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.

Much Gratitude

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.

Family Visit

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.

In gratitude,

Anna

About the #FuckNNM Hashtag: I’ve had a few questions about the hashtag #FuckNNM2021 that I’m using so the backstory is this: Lots of people were joking around New Year’s that, if 2020 was one long March that we were never allowed to put behind us, then was 2021 simply New March? And then when March 2021 rolled around, and we started getting all of the year-since-the-US-lockdowns-began I joked that March 2021 was, maybe, better known as “New New March.” That was shortly before I was hospitalized so at the time I created the hashtag “Fuck you, New New March!” seemed like an appropriate sentiment. Although this situation has far outlasted New New March (unless we want to argue New New March lasts until 2022…) I’m keeping the hashtag for the purposes of content collation.

Medical Update – Started Chemotherapy This Week

So I’ve started chemotherapy this week. While, obviously, the entire situation sucks it does feel good to be taking further steps to address the cancer cells hanging out in my body that we’d like very much to evict. Chemo is largely pain-free and, so far, has been relatively side-effect free as well. KNOCK ON WOOD. The following is probably tl;dr (“too long, don’t read”) for a lot of people but I figured some of you might want to know what my treatment cycle looks like right now so here it is.

On Day 1 of the cycle, I go into the clinic and have blood drawn and vitals taken. They run a bunch of tests to ensure that my immune system and other bodily functions are where they would like them during chemo (I will be immunocompromised but they want me not too immunocompromised). While I wait for the test results, I meet with either my oncologist or a member of her team to go over my symptoms and overall experience — how has my appetite been? fatigue? nausea? etc. Once both the blood test results and meeting with the oncologist have cleared me for chemotherapy I can begin onsite infusions. If they determine intervention on some point they are tracking is needed I may not be cleared that day and they will bump the next infusion forward until the issue is taken care of.

Assuming I am cleared for infusions, I am set up in my own cubby — a fairly spacious nook with windows, a lounge chair, and a curtain for privacy — and they begin the infusions. I have 30 minutes of “premeds” — medications such as anti-nausea medication designed to ease the chemotherapy treatments — followed by three chemotherapy infusions: 1.5 hours of Irinotecan followed by 2 hours of Oxaliplatin and Leucovorin infused concurrently. At the end of that set of infusions, I am hooked up to the portable pack of the final chemotherapy drug (Fluorouracil, or “5-FU”) which is given on a slow release over 46 hours. I can then return home while that drug does its work. I return to the center after 46 hours (on Day 3) to have my port “de-accessed” (meaning they remove the IV line) and am given a timed injection to boost my white blood cell counts the following day. Then I am good to go for the next 11 days before repeating the cycle all over again.

Side effects so far have been mild. One of the infusion drugs gave me clammy sweats while being administered (something that stopped as soon as that infusion ended). I have a hypersensitivity to cold air or items (grabbing items from the fridge or frozen items and sudden changes in temperature, like stepping outside into a cold wind) which triggers tingles on the skin like when your hand or foot falls asleep. It is supposed to fade the further out from infusion you get and doesn’t cause any permanent damage. They anticipate that I will likely have hair thinning or loss of hair based on one of the drugs I am getting; too soon to see that yet although I pre-emptively trimmed my hair on Wednesday so there was less to deal with in the first place. Thank you to everyone who has either sent scarves, or yarn to make hats, or other creative suggestions! Right now, I’m making a crocheted pouch for my slow infusion packet, which I have to wear/carry for 2 days of every cycle. After that, maybe I’ll turn my hand toward some head coverings.

Thankfully, the sense is that whatever side-effects I experience this round are likely to be how my body consistently reacts to the drugs. So I shouldn’t be getting fun!suprise!effects in cycle eight or whatever. And the team is very down with proactively managing whatever symptoms I experience — particularly those like nausea that impact quality of life. So that is comforting. They have already added an iron infusion to my next “premed” regimen because I am slightly anemic and they don’t want the problem to compound.

Liver Biopsy

I also had a liver biopsy on Friday 4/16 to determine the nature of some lesions on my liver that showed up on CT scans while I was in hospital. While my liver is healthy overall, and function continues normally, the oncology team thinks that some of the colon cancer cells may have migrated to my liver. Chemotherapy treatment will move forward as planned, but the biopsy results may guide decision-making for drugs used and other targeted treatment in future. Not the best news but we are taking things one treatment step at a time and thankful for my access to expert care.

Lotsa Helping Hands Care Page

A friend of ours has kindly offered to help coordinate any care needs we have over the coming months, such as meal delivery and transportation. She has set up a care page using the Lotsa Helping Hands interface. If you would like to have access to this community page, please let us know (email: annajcook [at] gmail [dot] com) and we can send you an invite. We have ways for people physically close by and also geographically distant to help out.

A Note about Hanna’s Surgery & Recovery

As many of you know, Hanna had surgery last week and is simultaneously through her own recovery. This was a scheduled hysterectomy, on our spring calendar long before I was hospitalized, to address chronic pain related to fibroids and endometriosis. We decided not to postpone the procedure for her overall health and well-being despite everything else going on. Recovery has been slow, because of the extent of the endometriosis that had to be removed, and on Wednesday night we took her back to the hospital for treatment of an incipient infection. She’s been on IV antibiotics and I am hopeful about bringing her home later today for a much-needed quiet weekend. We’re moving very, very slowly in the Clutterbuck-Cook household these days but grateful to have this surgery behind Hanna that will hopefully address persistent discomfort that has been building over the past several years.

In gratitude for your continued presence in our community of care,

Anna

As many of you already know, I was hospitalized in early March for digestive troubles that turned out to be caused by a blockage in my colon. The blockage was surgicallly removed while I was in hospital, I’m recovering well from the surgery, and my digestive system seems to be back online. Food, and the ability to eat it, is delightful!

Now that I have clearer information about the underlying cause of the blockage in my colon, and a treatment plan, I feel comfortable sharing a bit more with all of you. I have been diagnosed with colon cancer. The bad news is that the cancerous cells they removed had advanced pretty intensively into the colon tissue and surrounding lymph nodes. The good news is that I have no family history of, or DNA markers for, colon cancer. The doctors have also found no evidence of spread to other organs. I am young for this type of cancer, and otherwise healthy, so the doctors are encouraging. The next step will be a roughly six-month course of chemotherapy meant to stop any remaining cancer cells from getting fancy ideas. I have an appointment with a medical oncologist next week, when I expect to learn in more detail what that course of treatment entails. 

Obviously this isn’t fun news. In fact it’s fucking shitty news. I had hopes — even some tentative plans! – for 2021. None of them involved being diagnosed with cancer and coping with treatment. This is more like 2021 rudely decided to try and out-suck the dumpster fire that was 2020. Really, 2021? Really?!

2021: “Hey 2020! Hold my beer!”

However, I am extremely fortunate to have access to excellent health care — geographically accessible and well-insured — and to have all of you in my community of care. I’m currently on medical leave from work and have hit pause on all of my professional and volunteer activities until further notice. That means that I can focus on all the necessary medical stuff; on being at home with Hanna, and our cats Teazle and Christopher; on feeding myself and resting; on being in communication with close family and friends; and on doing activities that bring me pleasure and support my overall wellness. Knowing that I can put down work, work-related, and other life responsibilities right now has been a huge relief and I’m grateful to everyone who has stepped in to handle aspects of what I do while I am focused on survival.

I may not respond individually to every message or photo you Tweet, DM, text, email, etc. in the coming months but please know I am seeing your messages and it means a lot to Hanna and I that you are out there thinking of us and expressing care. I plan to give occasional updates here, as well as using the hashtag I established during my hospital stay for relevant social media commentary: #FuckNNM2021 (for “Fuck New New March 2021”). I also still have my monthly newsletter that will include either updates or links to updates here.

In the meantime, we’ll keep on breathing.