Cancer Update
As many of you know, my dear love & partner Colleen has been struggling with her health. We learned that she has cancer in January and have spent the last month going through heaps of appointments, scans, scopes, pain management regimes and grief. We learned yesterday that there are more growths, which adjusts the Dx from a stage 3 (advanced, but localized) to a stage 4 (advanced and metastasizing). Treatment from here doesn’t change much immediately but does mean that there will likely be more interventions needed over the course of treatment.
We have been raising funds and meal support, both of which have been going very well and we are super appreciative of all the generosity folks have offered to us so far. These calls are ongoing and still accepting donations. Support looks lots of ways, and I want to thank folks who have pitched in, shared the call outs, picked things up, dropped things off, as well as the moral support. I cannot down play that part at all.
I will admit I am struggling; this has caused huge upheaval in routine for me. I am grateful that Sea is happy and welcome to stay with my parents for the time being, but we miss each other dearly and the break from parenting, while welcome and appreciated has triggered some “who am i when not PAPA” early empty nest shit. The changes in Coco’s priorities and capacities have also been hard and heavy for me, while I am working round the clock on keeping things going, I am also grieving the parts of our reciprocal partnership dynamic that just can’t happen right now. I want to thank the friends who have been able to help hold and witness the ways that I am not OK.
This experience has given me the chance to sit with some of the inclinations we are trained in, especially as white folks, and especially in being raised “girl” in a patriarchy. We are encouraged to FIX. To do what we can to avoid or keep away discomfort, suffering, unpleasantness. We can feel a responsibility to MAKE IT BETTER with actions, what ever those may be. When we can’t act to protect ourselves and those we love from YUCKY feelings, we have been trained to use alcohol and drugs to soften or drown them. This is an unpleasant reality that can’t be avoided. It just sucks. And being with that, being not-ok, with how much it sucks, it can be uncomfortable. (cue fixing impulse cycle again). Thank you to all the friends who have been on the other end of this, just sitting with how much this fucking sucks with us. I heard Resmaa Menakem and Rev. Angel Kyodo Williams talking about this, and using the analogy of Muscle Energy Technique in Physio therapy. Within this treatment modality, the patient uses the support of the therapist and tools to be able to gently lean IN to the pain. Doing so helps us identify the pain as something that has edges, that isn’t all we are. Without isolating it, and identifying its boundaries, pain can be all consuming and feel impenetrable. We cannot do this work unsupported, leaning into ones’ pain without the support of tools or helpers can be dangerous and entirely unhelpful. I will be accessing some counseling supports through the cancer center, but while I have been waiting for that to start (and surely beyond it’s scope as well), my community has been that holding and I want to express deep thanks. There are practical things you can do, and if you have a fixing impulse, go ahead and check the links for ways you can DO. But also…. some of what needs doing is less “action” oriented, it’s listening, witnessing, empathizing and taking care of yourselves and your people.
If you are experiencing things out of the ordinary for your body, observe, take notes, and seek medical attention as soon as you feel that inclination. If you are worried about your health and your doctors aren’t hearing you or taking you seriously, bring an advocate, try and find second opinions. Advocate for screening. Opt in for protective measures. One thing we have heard from multiple doctors along the way is that they are seeing younger and younger patients all the time. If your doctor dismisses your request for screening because they say you are ‘too young to be at risk’, ask that they write down that they refused to screen you. And ask again. I don’t want anyone to have to experience the pain I am witnessing my love navigating right now nor the emotional pain of having to support someone through that. They say early detection can make all the difference, but without observing our own bodies and having the supports of conscientious and proactive medical care- that can’t happen. If you have been advised to get routine screenings, like an annual PAP test, mammogram or colonoscopy, bite the bullet and book your appointment. Many of us have fallen out of such things over the last couple years while avoiding health care settings has felt like a safer choice- but when things go undetected, and develop into something that needs to be treated; there is no option to avoid health care settings.
And lastly, I know that folks are getting excited about returning to “normal”. Some mandates are winding down and the general ‘post-pandemic’ attitude seems to be coming up more with each spring flower. I want to remind folks that the return to normal that is being offered is one that relies on medically vulnerable people being collateral damage in our commitment to ‘business as usual’ and never ending growth. Capitalism is a cancer, and I believe that covid is but a symptom of that. To see a truly inclusive and liberating end to this plague, we cannot throw the bodies of people with disabilities down as a bridge and expect we will survive the rising waters. To end this plague we need to enact measures of access justice like affordable housing, universal basic income, extended public health care including mental health and dental care. To end this plague we need to end the opportunities for people to profit off of the exploitation of each other, the land, and our futures. These measures may not feel as instantly gratifying as the sloughing of a mask, or as simple as calling for “freedom”, but they are where our liberation lies. We need each other. Community care offers a path to liberation in a way that ‘business as usual’ never will. Thanks for your care; continuing to wear a mask in public is a simple way to demonstrate that the lives of disabled and immune-compromised people are of value to you.
