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.