I’m fairly particular about my doctors and other health providers, but I wouldn’t say that my preferences are unreasonable. I’m definitely one of those patients that doctors don’t love, because I research before I go. I usually go in ready to hear what they have to say, and if it seems different from what I’ve read, I’ll ask what their thoughts are. If they engage in a conversation with me but have come to a different conclusion, I tend to find that satisfactory. If they are dismissive and regurgitate the way it’s always been, I feel less convinced of their practice. I did not go to med school. I do not claim to know and understand as much as a trained physician, nor do I think that I can read a study and understand it as accurately as a trained researcher. However, I at least like to feel like my healthcare provider is continuing to do research as they practice and not just relying on what they had been taught. The practice of medicine is a science. Things change, and there are researchers out there providing the evidence. Just give me a hint that you are staying on top of things rather than only reading the periodic general public guidance and releases from your medical association or the CDC. Or if you encounter something unique with a patient, you research it and come back with a possible explanation and potential solution. So, yeah, maybe my expectations are too high. But I’m willing to work with you. I’ll even send you my research, and you can tell me why you find it plausible or not. Haha.

So….the oncology appointment with my assigned nurse practitioner.

It was just a follow up after chemo to see how it all went. She basically just went through a checklist: vomiting? Nausea? Diarrhea? Sleeping? GI symptoms? Still taking these medications? I got the impression that it was supposed to be a check these boxes, make sure her heart and lungs sound good, then send her on her way. Well, not with me. And definitely not after my first week of chemo. This was supposed to be: okay so this is all the data I collected over the past 10 days, and these are my questions about that data. Ok fine, she didn’t have an hour to spend with me, but I did want an invitation to a conversation rather than a limited questionnaire.

She asked about my rash. I told her it seems to have gotten better the further I got from the onset. I had to offer the story of how it unfolded and potential data points that might explain why it happened. I also told her that it seemed to be managed with 1-2 doses of Zyrtec. That seemed to be enough to check her box. No further discussion or things to note for next time. Just, huh, we don’t have an explanation. Let’s see if it happens this time and if the zyrtec still works. I guess that’s acceptable. I would have preferred, yeah, we don’t know what you could be reacting to, make sure to note what happens before and after the rash appears and anything different that you do. It may be one of those things that as long as it’s managed by Zyrtec and you don’t swell or have trouble breathing, then we just let it happen. Expectations too high? Maybe I need a guide to interacting with Lacey as a patient to hand out to my providers.

I also told her about the headache sinus pain that I had on Saturday. She had no explanation for the sinus pain. She basically said it could be one of the pre-meds from chemo (this didn’t make any sense to me bc the pre-meds from monday would have been well out of my system by Saturday) or maybe Zofran (seemed more plausible, but she said it with such uncertainty and lack of explanation), but she didn’t seem interested in problem solving for the sinus thing or the migraine or headaches. I explained that I needed clarification about how much Tylenol I can take, and she basically said to stick around that 2000mg. She said I can add in ibuprofen if the Tylenol isn’t working at that point, but she added the disclaimer that we try to stay away from NSAIDS while on chemo due to bleeding concerns. I was missing a sense of confidence like: “Yes let’s figure out how to make sure you have relief from migraines. Definitely take your 2000mg of Tylenol. Then add in 200mg of ibuprofen. If that doesn’t work, we can come up with more options.” Instead it was more like, “You should be okay taking 2000mg of Tylenol and it’s probably okay to take ibuprofen if it’s really bad.” I need more certainty than that. My relationship with medicine is very much an “as needed” attitude, and it has taken a lot for me to take medication at the first sign of migraine rather than waiting for it to get so bad that I break down and take it. With her instructions, I feel very much back in that tough it out until you have to mindset. The infusion nurses are so good about being on top of nausea. They gave exact instructions and made it clear not to get behind on it. I needed that for migraines. I didn’t push for more clarity, because I just didn’t get the sense from her that she would provide it.

I asked several other questions, and her response was similarly filled with shoulds, probablies, and hopefullies. I didn’t love that she didn’t ask specifically about the known side effects of cold sensitivity, neuropathy, Hand-Foot Syndrome, or mouth sores, but I had to initiate the conversation about my experience with those thus far. The final off-putting remark was, “Well hopefully on your next round your body will be more used to the chemo medications, so you won’t have as many side effects.” Sure, that might sound like an encouraging thing to say. However, it’s fairly well documented that toxicity can build, and typically cycle 1 is better than the following cycles. Yes, some side effects can get better. Your body can adjust. Yet, let’s say my side effects get worse, and she has indicated that my body should adjust. Guess where my mind goes? “Oh no! What’s happening? Why does this feel worse? It’s supposed to get better.” Obviously, I am way more researched and prepared to know that it can get worse or stay the same, and in some cases get better for a little bit then suddenly worse…all of those things. It just felt a bit naive to share that encouragement without a heads up of what else I could expect. I would have even settled with that encouragement and a “if they don’t get better, we’ll figure out how to make you more comfortable.”

It’s probably clear that for my next chemo follow-up I will be requesting a different provider. Although, I think I see my actual oncologist for the next one. Unfortunately for the NP, City of Hope sends me a satisfaction survey after every appointment. I usually don’t pay attention to them. Well this little text notification caught me at a time of show no mercy. I think I might be getting a follow-up call from their customer service department…