Living in Cancertown brings with it some of the oddest realities. The way you existed and understood everyday life is blown to smithereens. What is up is now down, what is red is blue. No one really ever talks about these changes. You are expected to encounter them and simply get on board.

Example 1: Jobs. The number of times my oncologist has told me to ‘just stop working’ is truly bonkers. She says it in the most cavalier of tones. Like she could be telling me to wait until tomorrow to do the laundry, but instead she is telling me to just stop going to work.

She will ask me how I am doing and of course I will tell her that I am exhausted and feel like the contents of a trash can and she will say ‘maybe you should stop going to work for a while.’ She will ‘write me a note.’.

Stop going to work? Is that an option that no one has ever told me about, as an adult? Can we do that? As far as I understand it, I am required to actually show up to work in order to keep my job. And do doctor’s notes work for grown-up things? I thought this was just for, say, getting your kid out of a sport they stink at without financial penalty.

This must have been suggested to me at least 4-5 times within the last 4 months. I have asked the school where I work if there is some kind of short term disability, so I can follow doctor’s orders, but there is not. They have been crazy-generous in allowing extra days off and basically guaranteeing my job safety, so I can’t complain, but had there been a way for me to just take multiple weeks off without financial penalty or losing my insurance, I would have.

Example 2: Bloodwork and vital signs. Every time they take my vital signs, which is constantly, something starts beeping. Due to lymphedema in my right arm, I can’t have my blood pressure taken there. I have a port in my left upper arm so can’t have it taken there either. They either take it on my left forearm or sometimes my ankle/calf. I have been told that these areas are not as accurate as the upper arm, but I am still always alarmed when my BP comes back high, which it almost always does. In normal times, my BP is super low, so I find this change alarming, but no one seems to bat an eye.

Bloodwork. If you were to stumble across my blood test results with no context you would assume I was near death. This one really gets me. You know how they have a range of what is normal, and the results usually have an infographic to show where your results fall in that range? There is usually something that will indicate if you are outside of normal? Mine look like maybe you accidentally mixed my results with that of a drunk flamingo. Everything is wrong.

The doc will come in with the blood test results, to clear me for chemo, and she will say, ‘everything looks great, let’s go ahead with treatment.’ I will subsequently look up the results on the app and see that according to the data presented, I am actually dead. For those of us who are slightly in the know about medical things, and work hard to advocate for ourselves, it would be helpful if the medical team would take some time to explain why it is considered okay for our results to look like this because I know that if I walked into an ER in a non-cancery fashion and these blood results came in, I would be admitted without question.

A few weeks ago they tested me for B12. Why? No idea. My results hit the app long before a doctor read them. It said I was 10x the normal limits. A quick Google search showed that I was going to be dead within 3 weeks. I was pretty sure this was not true so I did every combination of ‘on-chemo-high-B12-results-normal?’ and nothing even came close to this being normal for someone on chemo.

It was a weekend and I wasn’t in the mood to call my doctors asking if I had 3 weeks to live so I asked the hive on one of my breast cancer FB groups. A few people wrote back quickly saying that their B12 was crazy high too, no one cared and it went back down after chemo. I don’t know call me crazy, but shouldn’t our health care providers be letting us know what they are testing and why insane results are okay?

Example 3: Nutrition and Exercise. We touched on this recently, but there is a slightly different angle here. I have made it clear to my medical team that I am unable to do much in the way of healthy eating and exercise, due to how I feel. You would think they would say, ‘try to do you best to get protein in.’ Or ‘get out there and take a walk.’ Nope. No one cares. I have gained 15lbs in 4 months and my doctor thinks I look great. What?

Isn’t it their job to remind us that we need nutrients and not an endless stream of grilled cheese and pillows? I guess I should be glad that they are understanding of how hard it is to eat well and move during treatment, but the complete lack of motivation seems peculiar. Being heralded for packing on lbs feels like living in the upsidedown.

Example 4: Covid. When I was re-diagnosed with cancer late last year, I assumed I would be placed into a hermetically sealed bubble, so as not to get Covid alongside cancer treatment. Here is the truth, no one seems to care at all. I asked my oncologist about how worried I should be about getting Covid (I’ve never had it, that I know of, which at this point sort of makes me feel like a loser???) and she said that ‘none of her patients have died from it’ and then she just moved right on to the next subject. Wide-eye emoji.

No one has mentioned that I should get another booster. No one is asking me about my risk factors for exposure which are many as I live with 3 germy kids and work in an elementary school. Maybe this circles back around to her telling me to simply not work?? Unclear.

What I do know is that the vibe is laid back at best. Yes, everyone is masked at the cancer center, but when I say it feels Covid-casual in there, I mean it.

So there you have it. Cancertown is a weird place where nothing makes any sense. I am chubby, missing the no-work loophole and on paper, barely alive. This is not the multiverse I would choose to live in by any means, but I seem to be stuck here. Send me your tips for finding the wormhole please.