Cancer Update: WWCD?
Content notes: cancer
Big updates up at the top: the CT scan of my chest came back clean* and we have a surgery date! December 9th is the big day.
And, over the whirlwind that has been this week, I’ve been so thankful for the support that everyone’s given. Thank you all for sharing your stories and reaching out. And a gigantic and bewildered thank you to everyone who’s donated to a GoFundMe or signed up for the patreon. I am not good at asking for financial help and I’m really thankful that not one, but two people recognized that and organized these fundraisers for me. You can give here or here or support my creative work via patreon here. And now, on to the post!
In Pastor School™, they teach us a couple strategies for when people share Big News™, and it’s one of the most useful things I learned in seminary. And since I promised myself that I would share what I learned in Pastor School™ as often as I could, let me tell you what I learned (or what I remember, anyway). So that’s today’s post: WWCD- What Would a Chaplain Do?
1. Don’t just do something, stand there. I learned this phrasing from John Green, in one of the times he talked about his time as a hospital chaplain intern, and it’s pretty broadly applicable. It resonates with how David Finnegan Hosey talks about chaplaincy as a ministry of presence in Christ on the Psych Ward. We hear this idea often in seminary because so many pastors are doers and feelers and problem solvers. We, like most others, really want to do something when we hear Big News™. But if you can, resist the urge to act when people tell you they have cancer. Don’t just do something. Stand there.
2. Ask, don’t tell. A cancer diagnosis involves a lot of unknowns and a lot of waiting, or ones like mine do, anyway. I have discovered that my gut reaction, my first go-to move, when faced with the unknown, is to throw some words at the situation. If I were transported to the end of the universe, when all matter has settled into a beige stasis and the only thing existence has ahead of it is eons of nothing, I would look out over the vast stillness, and start talking.
Don’t do that.
Fight the urge to talk at the unknown. Ask open questions, like, “How did it feel when you got the diagnosis?” or “What does your body feel like?” or “What emotions do you have?” Even if you’ve had or have cancer or another serious sickness, everyone’s story is different because every body is different. Asking questions like, “It was like this for me (or my friend/relative). Is it like that for you?” gives people space to think about their own reactions without having to fit a mold. Even something as simple as “Is it scary?” instead of “It must be so scary!” leaves space for people to think. **
3. Care in, stress out. There’s this idea called circles of care, and it’s basically a guide to help you figure out who you need to care for and who you can dump on. That’s what the circles above are (based off of this helpful guide I found on the internet, with more in-depth explanations and more links). Basically, I am in that most enviable of positions, the center. I have cancer. I get to dump on everyone if I want. Then, for example, Ian’s in the next ring out. In theory, he gives me care and sends his stress out to the next level. Ian’s friends and coworkers are in the next level. They care for Ian and any stress they have, they send out.
These circles are different for everyone; like, for me, I have friends and family in the Ian ring, and I have former coworkers in the friend ring, and family in every ring. It can be hard to know where you fit. When in doubt, care for the person you’re talking to and find a person you know is in an outer ring to talk about your feelings with. (Also, talk about your feelings.)
4. Ask, ask, ask, and suggest. Related to #1, everyone wants to do something in the face of Big News™. We want to cook meals, we want to knit sweaters, we want to do everything in our power to make this terrible thing better, and it wrecks us that a lot of the time, there’s not much that we can do. We’re not doctors, we’re not central scheduling at the hospital. No matter how much we may want to, we can’t get tumors out or take anyone’s place. What we can do is ask.
Ask what you can do. If it’s early, they might not know, but they’ll remember that you want to help (probably). As they plan for surgery, treatments, or recovery, they’ll probably have tangible needs you can meet. If they say they don’t know, you can always offer. “Hey, would it be helpful for me to organize a meal train or would you rather have gift cards?” or “I’m doing a recycling run-- want me to pick up yours?” or “I have a lot of practice calling doctors, so let me know if you want me to pick up a shift!” The thing about asking first or offering something concrete is you’re giving power and autonomy back to the person whose sickness has taken choices from them.
5. Be okay with things not being okay. Most of the time, I struggle against the idea of being okay with things not being okay. My moral core screams that we should not be okay with the run-of-the-mill injustice and oppression and exploitation that exists in the world every day, and while I do think that that’s true, I also know that this attitude can at times be like running yourself into a brick wall everyday: you’re getting bruised but the wall ain’t moving. So, figure out how (and when) to be okay when things are not okay.
Practically, in reaction to my diagnosis, this might look like wrestling on your own, or with trusted friends, family, or mentors, with the fact that thirty-four-year-olds shouldn’t have cancer, but I do. That’s scary and not okay, and I get it, and we all have to be okay with it, because it’s the reality I’m living in. This might also look like being okay with slow responses or no responses at all from people who are inside the circle of care from where you are. In a perfect world, I would say thank you to everyone who’s liked a post or followed the blog or donated or said a caring word, but I can’t. But trust that I see your words and gifts, and know that I value them, and be okay with the not-okayness that leads to me needing to conserve my energy. This might also look like being patient with me, or others inside the circle of care from where you are, when I am angry or frustrated or petty or impatient. These are signs that I’m not okay. And we have to be okay with me not being okay right now.
This one is the hardest for me to do. I am not good at accepting that this is not okay and this is still happening. I am not good at holding together the dual truths that this is unfair and that I have to accept this. When all of this is over and I am *knocks on wood* cancer-free, then I can jump back into the work of making the world a better, more just place. Right now, I have to accept this as it is. I have to be okay with things not being okay.
This is not a comprehensive guide, nor do all of these concepts apply all the time. Sometimes people do just need you to come over and do things for them, no questions asked. Sometimes people do need support from someone in an inside ring, or are able to give care to an outside ring. And sometimes (often), we do need to not be okay when things are not okay.
I’m sure there’s more to add, too, but I wanted to share these skills now, before these updates are drowning in diagrams of colons and explanations of scans. I can google with the best of them, but I’m not a doctor. I do, however, have a degree in magical words, and experience sitting with people who are sick and dying, and while I’m not the best at it, I’ve certainly learned a lot over the years.
Again, thank you to everyone who’s reached out and everyone who’s given. With a clean chest CT, we hopefully only have a few more hurdles left between me and cancer-free digestion:
My START appointment on December 2nd, where we’ll do bloodwork and other surgery prep.
Surgery prep (similar to colonoscopy prep) the day before the surgery, December 8th.
Exact surgery scheduling, also the day before the surgery.
Hubert’s eviction date, December 9th.
Recovery in the hospital, hopefully just 1-2 days post-surgery.
Pathology reports and staging (1-2 weeks after surgery).
Check-in appointment with my surgical oncologist (2 weeks after surgery).
Recovery at home (up to 6 weeks).
If my lymph nodes are cancer-free, then it’s periodic CT scans and yearly colonoscopies for five years to catch any recurrence. If the cancer’s spread to my lymph nodes, we’ll talk about chemo and radiation, so keep your fingers crossed that my lymph nodes are fine.
As before, you can sign up for cancer updates below, support my work on patreon, or -new!- give to either GoFundMe linked above. We’ll be using the money to help make up for lost wages during recovery (yay being an independent contractor), other expenses, and as a buffer for any future medical procedures (may they be few and simple!). Thank you, thank you, thank you, again.
*For those who want the technical terms, the narrative that was released to me said that it was a normal chest CT with contrast and that there’s no evidence of distant metastatic disease from colon cancer. Since colon cancer likes to spread to the lymph nodes, liver, and lungs, typically in that order, and since my liver looked good in the CT on Halloween and my lungs looked good in this CT from the day before Thanksgiving, the next thing to check is my lymph nodes, which they’ll do via biopsy on the lymph nodes that come out during surgery.
**Addendum: When you ask, let the person take their time to fully answer your question. As Steve Carrell’s character says in The Patient, if you slow down and let people talk, they might say something that surprises you. Along these lines, there’s a great episode of Up First that came out today where the interviewer does a wonderful job of asking good questions and opening up the space for complicated answers, if you’re looking for an example.