It's weird - the things we have control over in this process and the things we don't. We did not choose our doctors. In the hospital, doctors just appeared. A neurosurgeon, a neuropsychologist, an oncologist, and countless others just appeared in the room and gave us information. We kept seeing the oncologist after everything, and luckily it has worked out. But, we did not make a conscious choice or do any research about the doctor.
The radiation oncologist was also just assigned to us. I'm sure there is a process behind the scenes, but we are just told who to go to and so we go. We only met him maybe twice the entire 6 weeks in treatment.
We don't choose when we have appointments. They just appear on My Chart. If we have a conflict, I will try to get them changed, otherwise we just rearrange our days to figure it out. A lot of the time, I don't totally know what the appointments are for. Sometimes they do labs, sometimes they don't. Sometimes we see nurses, social workers, child life specialists, and sometimes we don't. People just appear, ask the same questions, and we talk to them. I do like reading all the notes in the chart afterwards. It makes me feel like I'm a good parent. I get her to her appointments. We make small talk. My daughter is normal and well adjusted.
Right after we got the diagnosis, I saw on a My Chart note that we were assigned a Patient Navigation Acuity Level 4 for treatment. I'm not sure what that means exactly, but it felt like everyone was constantly checking on us, so it must be for serious cases. I think we've been bumped down since then because clinic appointments are not as intense, and people aren't constantly asking me how I am handling everything. I like that the office is so organized and coordinated, but it does feel like being on a patient conveyor belt sometimes.
However, we do get to decide on the treatment plan. We can refuse or seek out different treatment options and are the ultimate deciders, as we should be obviously. But it's also weird because what the fuck do we know about cancer and cells and medicine? I don't know if we should take X medicine or Y medicine. I don't even know what all the options are to ask good questions a lot of the time.
Some parents give their kids supplements and various therapies that are outside of the the "traditional" treatment plan. I know this is a way to enact some control over something that feels so out of control, trying out any possible solution in the absence of effective treatments. But then, if there is any success, it becomes selling that plan as a solution to others. As humans, we love anecdotal data - we make sense of things through stories. So, one person's success with alternative treatments is super persuasive. One story isn't a cure though. Wading into those kinds of treatments feels overwhelming to me because what the fuck do I know about how the body works or how cancer works or how all these different chemicals interact with each other? I want someone with years of medical training and experience treating this specific disease to tell me what to do. But, I guess no one really has the right answer and it is up to me and her dad to decide what is best for her whole self. That's a lot of pressure.
One of the drugs she is on, Mekenist, is having some side-effects. Nothing major at this point, but she has had an upset stomach occasionally and has some skin rashes popping up. The clinical notes call it "skin toxicity." So, I spent $100 on fancy lotions and shampoo to help in addition to the hydrocortisone and a topical steroid cream she was prescribed. I found these recommendations on another Facebook group specifically for caregivers and people on these drugs. The point of the group is to talk about managing side effects. It's weird the groups that spring up to help regular people understand and deal with medical treatments. There is definitely a gap between what doctors tell us could happen and knowing what we should do about it when it does. Doctors want to know about all the vitamins my daughter is taking and don't want her on a lot of supplements. But, can I give her probiotics for the stomach issues? I don't know. Do we just give Imodium regularly or should we wait until there's a problem? How much googling is too much googling? How do I learn to trust myself through this?
A song to scream in the car with your kid after a day spent dealing with their eyerolling
4 Non Blondes, "What Up?"
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