Hopitalized For Now- Update

Tldr: Coco has cancer. She is in hospital for now. She loves and appreciates all the layers of support that are holding her. There are more ways to help and show her love. Her birthday is coming up.

While the last couple of months have been a bit fits and starts in how active we have been able to be with all of you out here in Coco’s extended networks of care, it’s time for an update. Coco has been working on posts of her own for weeks now, but as the waves of fatigue roll in, she loses focus and hasn’t been able to actually get much past drafts. So she’s asked me to write something to y’all to catch you up.

So starting at the beginning, or A beginning, Coco was diagnosed with stage 3 cancer on the 18th of January. In the time since we had first a block of working on dealing with the news and managing the pain and symptoms while we awaited being connected with the awesome nursing team at Cancer Clinic Pain and Symptoms. We put these fundraisers and meal train and supporter facebook group together and were given an incredible amount of support in the form of foods, delivery gift cards, house cleaning, hand-made goods, laundry support, fresh flowers and meeting our initial goal on Go-Fund-Me. As investigation continued she learned that there were also growths in her liver and her diagnosis was upgraded to stage 4 to reflect that. Folks have come from out of town, kid went out of town for a while, and the mail and DMs from all over the internet have brought a bright light to Coco in an incredibly hard time. 

She completed the first stage of her treatment, which was a combination of radiation and low-dose chemotherapy for 5 weeks, 5 days a week. During this time she was at home, cared for by our little inner circle squad, as we went through it and all were pushed to the edges. Her nurses continued to give her the disappointing news week after week, that she was one of a small number of people who experienced the worst of each side effect, then another, then another. More pain, more fatigue, burns, aches, and blood sugar spikes. 

Searyl came home after 6 weeks with her grandparents and returned to school, Johanna and Kori tried to build a schedule of rotating care that was scaffolded by Searyl’s school schedule and left space for us to both take care of ourselves and other relationships.

Colleen’s endocrine system and out of control blood sugar levels were an undeniable sign of her riding her edges. Instead of properly celebrating the end of the arduous 5 week treatment she went directly from the cancer clinic to the ER to get a diagnosis of Diabetes. Johanna has been dealing with her own personal health things that have left her capacity compromised. I have felt like I am working really hard to stay ok enough to keep going, using all the tools, taking all the self care, doing groups, seeing a counselor etc.

Then, just as we were into our first week to attempt our next go at a balanced and sustainable care rotation…Searyl brought home something cold-looking from school. We first heard her lungs rumbling like they used to before her allergies and asthma had been diagnosed and treated on a night we were sleeping at Cocos. We sprung into caution mode right away, while I split to be masked and attending to Searyl, Coco did her best to keep herself away from potential pathogen risk, even though it broke her heart to hear Searyl and not go to her. Sea and I stole away, getting home to our apartment before 7 am where we have been since. We have not tested for covid, but I believe it to be a cold, and given the level of care and caution we chose to take, it doesn’t really make a big difference in our self isolation protocols. We’re at home. Which leaves a rotation without the rotation aspect. We were working on making arrangements with other friends who could come offer Coco some care in her home, but as some of her needs are quite personal and complex in nature, these arrangements felt like they were asking more and more of our crew, while always coming up a bit short of the full spectrum of care Coco needs right now. Y’all know that she is the sweetest and cares deeply about those around her, but when she is in a rough state that can mean she doesn’t want to ask for all the help she needs cause she doesn’t want to burn her people out. 

Between blood sugar management and medications, cancer treatment side effects, pain and opioid medications and their side effects, there are a lot of pieces. More pieces than Coco can hold on her own, and more than her team can hold with her or for her from her home right now. We have got her set up on a floor at the Victoria General Hospital for now, where she has the pain management assistance and oversight she needs, access to things like insulin that she couldn’t get for home yet, and most importantly the support of hospital social workers and nurse liaisons to make sure that all of the pieces required to keep her safe and well at home are in place before she is released. 

So here’s where you come in: 

1. Please understand that Coco is both in huge amounts of pain, on huge amounts of meds that make her super spacey, way more tired than ever (and Coco has been a nap champion longer than I’ve known her, so this is something). She doesn’t have a whole lot of capacity for engagement and can fall asleep or space out in the middle of conversations- don’t take it personal if you don’t hear back from her in the sort of turn around you may have expected in the past. That being said, she loves when you send her cute little things, impressive arts, smart takes (like short form meme sort of things- not reading articles r.n). If you are trying to get in touch about helping, it’s easier to check in with me and/or Johanna or to email cococancercabal@gmail.com which we both get.

2. Hospital food sucks. Coco is really craving proteins and the few sorts of food that she knows she can stomach easily enough, that can also be relatively stable if it takes her a few hours to eat them. Her top choice requests right now as of noon on Tuesday are: a ham & cheese croissant and/or ham & cheese sandwich, pizza/flatbreads and a chocolate croissant (there is a cobbs across from the hospital, but she can’t leave) and a couple of navel oranges. Obviously visits in hospital are limited to hospital visiting hours and the covid expectations that no one should go in if they are symptomatic or awaiting test results, everyone masked etc etc. If you are local, and have ability to make drop-offs to the VGH hospital, let me know and I will reach out when she passes on wish lists in effort to line her up with the things. We can set something like this up thru the meal-train bonus features.

3. Go-fund-me will likely resume with a new stretch goal once we have had a chance to review and revise budgets. Some of y’all are set up with monthly payments and that is really helpful for knowing that there’s a pool to pay for all the things that come up. So far some of the things have included medications beyond what is covered by PWD, food groceries and the needed delivery when we’ve all been maxed out, home and personal equipment beyond what we could get through loaner programs, and transportation costs beyond what we were able to access from the volunteer drive program from the Cancer clinic driveline. Personal supplies like linens for night sweats, a cane to help with reduced balance and mobility, a hand held shower head have all been crucial. We are so incredibly grateful for the support folks have offered over the past few months that have helped us be able to be with this really horrible situation, without having to have a bunch of extra stress about what we could afford.  

While we don’t know how long she will be in hospital for, we are still projecting a track towards the start of drip chemotherapy as soon as her body and her oncologists are ready. The road ahead of us is still long, a couple months more of chemo before the surgeries begin, which will likely be at least 4 procedures, hopefully seeing her NED (no evidence of disease – i’m learning all this new cancer lingo) and getting back to life in time for NEXT taurus season (a year from now) when she will be turning 50. She has big dreams and schemes for that birthday, but we gotta get thru this one first. If you are sending Coco a gift or card or flowers for her birthday (May 18th) just check in with the Coco Care Cabal on Facebook or by emailing cococarecabal@gmail.com  to make sure it’s going to the right place.