xkcd posted an astute comic several days ago, and it made the rounds on Bluesky. I don’t normally check xkcd, and I’ve kinda fallen out of the habit of checking webcomics by directly going to their sites.
I’m glad I saw it. If you haven’t, go check it out now.
Okay, now that you’re back – this comic does a fantastic job capturing the survivorship process. What’s crazy about it is that so many things ring true:
- The haze that you find yourself in in the first couple of years. You continue doing stuff that you think is fun (and is great), but there’s this weight that is ever-present and mutes the fun you’re having.
- The very first time that the caregiver needs some care and the roles are reversed, you get absolutely smothered with support. This happened exactly as shown in the comic!
- At some point, you get a scare. You get told by a doctor — again — “don’t worry about it, we’ll let you know in a couple of days.” This experience becomes evergreen.
- At some point, it becomes your new normal. It happens at a normal time, there’s no big “switch flip” moment. This is the time that the comic loses its dim tone.
- At the end of the day, you get older. Who knows if you’re wiser, but you got all that experience under your belt.
The lovely thing about this comic is that I almost read this as a recollection. It’s Randall’s way of remembering what happened in the sequence of events as it happened. Particularly at the beginning of the comic, there’s a series of really strong touchpoints where you’re in shock, you’re in disbelief, but at some point you just remember the things you did in between all the treatments and nonsense you had to deal with. The drains, surgery recovery, fantastic nurses showing how to treat your own wounds, and belly-grabbing plastic surgeons aren’t anywhere to be seen — those are repressed.
I’ve neglected to write about our experience after my last post about it. Suffice it to say that it’s missing the failure of Kaiser admin and PCPs to promptly reply to Amanda’s work about her leave of absence that nearly cost her her job, discovery of breast cancer, the two doctors that dismissed Amanda’s concern, administration of radionuclutides by Kaiser that nearly jeopardized the scheduled mastectomy the next day, Kaiser’s subsequent failure to refer and diagnose a surgery-caused after-effect, and the 911 call made after Amanda passed out days after a sinus surgery.
I was given advice to write about the experience to process it — journaling or writing a letter to Kaiser to raise our concerns to someone higher than our immediate care physicians. Every time I started to work on it, it was difficult to maintain that momentum to finish that artifact. I started a letter to Kaiser detailing why we were oh so very disappointed with their care. I started a data visualization showing how doctor appointments start spiraling out of control when diagnosed with a chronic condition. I started writing in a journal.
All of them kinda fizzled out. What continued was the good times that we’ve always had. This year, we were able to sandwich a show in Chicago between visiting friends in Madison and Minneapolis. Amanda was able to attend Camp Breastie again this year. We were able to travel with extended family to the Philippines for a family reunion and some exploring. We went to Puerto Rico with friends. I attended Quakecon again and Amanda reunited with her 2024 Camp Breastie cabin in Key West. We started a weekly hangout open to all in April and mantained it every week since then.
People ask if Amanda’s going to work full-time again, but she says she’s saving her time to support friends and family as they supported her. As needs come and go, that decision seems as valuable as ever. I’m trying to do my best to continue to support her.
We’re all taking things one day at a time.