Her energy had an edge to it. She was talking extra loud, and extra fast. But since she’s Dr Surgeon and tomorrow she would be standing over my body with a knife in her hand – I thought it reasonable that we be on the same page.

I expected a professional meeting in her office since it was just a consult, but instead I got the whole weight/blood pressure/49 questions/ and the invitation to disrobe and put on the hospital garment. Ok, I’m flexible and I can be outwardly compliant. I answered the questions and put on the damn garment. (Expectations can be messy.)

Now let me pause in the story for a second to talk about the experience of being there in that office. The people in this office speak very loudly. Like painfully loudly. I’m feeling it as a trigger of some trauma that my body has not forgotten, and since I’m seated with my back against the wall – the seat that I’ve been directed to take – while the nurse is standing and moving around the small room – always super loud and sometimes quite close… my nerves were. On. Edge. #powerdifferential

When the nurse finally left after going over every single aspect of my chart with me again, I checked in with my Austrian – extra loud? Yes! I was buzzing!

(This was very different with the oncology nurse the other day – we were seated together at a table – a very different dynamic. It is NOT this way everywhere!)

Here’s my guess on why this is happening: They deal with older women all day every day, so maybe they speak loud to compensate for various levels of hearing loss. Here’s what makes me deeply uncomfortable: the population of women going to see Dr Surgeons for breast cancer all over the country are statistically older vulnerable women. And for that population, if you want compliance, a firm loud voice… just. Works.

Selah.

#grr

Dr Surgeon showed up and her energy was on edge from the get-go. First she revisited her efforts to schedule me for surgery via text message at 8:06 pm, for surgery the following day. See the post “I said no” for details.

Secondly, she mentioned that Dr Chemo had been upset that I said no – filed under things I did not need to be told. Maybe we should talk about those little comments that show displeasure and disapproval at not being obeyed and communicate an expectation of compliance. Dr Chemo’s happiness or lack of it is not my problem.

Third, it quickly became clear that Dr Surgeon was unhappy that I’d seen Dr Radiation. She’d had Nurse Navigator call me and let me know the visit to that Dr Radiation wasn’t needed, and I had explained that our client made that appointment and so we would keep it. Then when we met Dr Chemo, she actually referred us to Dr Radiation saying “She should see you before chemo and surgery get you, so she’ll know who you are.” (Isn’t THAT an interesting statement!!) Dr Surgeon was incredulous. This is not how this usually works. What kind of mountain is God moving for me?! Whatever it is, Dr Surgeon was. Not. Amused! (Again, her happiness is not my job.)

Forth, she asked me what Dr Radiation had said, and then when I answered the question – she refuted and minimized it. “Did she also tell you that you can get a larger dose of radiation and just go once a week? Did she tell you that? Hmm???” I’ll leave you to imagine the tone of voice on that one. And no, she didn’t tell me that because that’s not what she recommended I do. Yeah, I can do tone of voice!

Wouldn’t it be hilarious to watch a game of chess between a surgeon and a radiation oncologist?

Oh wait, I AM THE CHESS(t)

L.M.B.O!

I asked questions about various options in terms of lumpectomy vs mastectomy and she answered those. If I go for a mastectomy, I would not need to get radiation at all, so I could get off the cancer train sooner. She heard that, but quickly disagreed. She told me that there is twice annual “surveillance” (such an interesting word) for breast cancer survivors. She said primary care physicians aren’t qualified to do those kinds of exams and basically I’m on this train for life. Choo Choo! (Or not, LOL!)

I asked about margins, because I have read that this amount varies from hospital to hospital. Literally in some places it is as little as 1mm! (This is what happens when you watch videos of cancer researchers presenting their findings.) She said 1-2 cm. So think about the space of the starfish which is about the size of a quarter, and then add 1-2 cm all the way around on all sides, that’s how much Dr Surgeon takes out. Well, that doesn’t leave much left, so I’m glad I asked. A spot the size of a quarter quickly becomes the size of a small tangerine at those margins.

If I opt for a mastectomy, then I don’t need the marker placement on Thursday. The marker is like a tiny orange cone of a electronic reflector that shows the surgeon where the cancer had been before chemo ate it. So she said it was fine not to get the marker placement done on Thursday. Then if I decided on a lumpectomy, then I would need the marker installed later and then she explained a horrific-sounding way the marker placement would be done in that case. Again, another little comment that suggests that total obedience is my best option.

[Look, it would be lovely if the medical professionals we deal with were people who were trauma informed, and are self aware about their own triggers. I dare say that urge to manipulate comes pretty easy when you’re got a certain number of cases to get through in a day – that may explain but does not excuse using power differentials to make your own job easier! I am sorry about this, I’m not happy that the world is the way it is! I see tons of potential for vulnerable women (of any age) being compliant without comprehension of their unique situation and options. This goes triple for people of color, lower income folks, people with challenges in communicating in stressful situations. I am Not. Happy. About. This! Making sure that someone else is in the room with you is important! Nobody should ever go through this alone!]

I think expectations are powerful. I like to know what to expect, it cuts down on the dread factor. So here are some of my expectations, and feel free to borrow any of these that seem helpful to you!

• I will take someone with me to doctor’s appointments to cut down on the intimidation factor of the doctor/patient power differential. This is important. I will ask that person to take notes. This is different if I’ve done the thing a few times and know the people, but for places where you see different faces every single time – this matters!!
• I will expect the whole 49 questions and hospital robe – even just for a conversation with a doctor. Fine. No worries. We jumps z hoops.
• I will expect my doctor to be human and have the occasional rough morning and get irritated, but I will also expect my doctor to behave toward me in a professional manner, and if that is not the case, I will firmly say NO. Surgery is not scheduled via text message the night before. It just isn’t. I said no.
• I will expect that being a doctor is sometimes traumatic, they see people who are in crisis, and it never hurts to be kind to them. It may not be their fault if they are not trauma informed.
• I will expect to do my own research, to look up terms I don’t understand when I see them in the system. They may be nervous to explain precisely how a how procedure is done, but I will keep asking until I have the answers I need.
• I will ask about terms the doctor is using and ask what they mean, even if it means I have to interrupt. It’s a waste of her time and mine for me to wait until she stops talking when I haven’t understood the last 5 things she said.
• I will expect some micro-messages that I am expected to obey, conform, and/or be compliant. AND I WILL PURPOSEFULLY DISREGARD THEM. My goal in treatment is not compliance, it is healing… even if that means I “mess up” a schedule here and there. Please friend, I can not even express how strongly I feel this one!! If you don’t adopt any of the others, please adopt this one!!
• I will expect that when I am in a doctor’s office, I am there for my health. I will be the focus of the consultation, not what some other doctor said or did not say. This is one time when it really is all about me.
• I choose not to be afraid of the word “bitch” if that’s what it takes to get the outcome I want for my body. If a word of that nature is trotted out then that means the system is wrong, not you!! We sometimes spend too much energy trying to play nice when we need to focus more on being a faithful advocate for ourselves. Don’t let anyone manipulate your compliance and acquiescence when it comes to your health care – even if that happens in the form of tiny little comments here and there. Yes, that happens, but it’s better to be thought a bitch than to be manipulated into something that isn’t right for you.

You and I are made in the image of God, we have earth suits on loan from Father, and we will need to let go of them one day. In the meantime, stewardship is a thing. Take care of your body like it’s your job!! Hint: it is. Take care of yourself like you really matter!! Hint: you do!!

You have permission to seek the care that is right for you, even when that means taking “extra time” with an expensive doctor to get the answers to questions in understandable terms. The system isn’t working right if you’re headed into a procedure you do not understand! Expect that you will need to be your own advocate. (I don’t want you to be surprised by this.) And to be able to do that, you’ll need to know your own worth. Now, it’s easy for me to see your worth, but you have to see it in order to get the care you need. So please know I’m over here pulling for you for all I’m worth. You matter. Your health matters, and I’m glad you’re focused on your heath. We can expect our doctors to be every bit as human as we are, but we don’t have to leave the consultation before we have the answers we need. Deal? Ok, good.

Sending you so much love!

~Carmen

PS: I’ll be back soon to talk about the surgery to install port and check those lymph nodes, it went well and I have good news and some funny stories to share. So stay tuned! You can enter your email address at the bottom of this blog post, then this healing saga will appear in your inbox like magic and you won’t have to look me up. Thanks for stumbling across this blog – so glad we met – feel free to leave a message. I read them all, and approve all that are pertinent. If you just want to write me a note that doesn’t get published – just write to me at carmenshenk at gmail dot com. I will read every one even if I don’t have the bandwidth to reply at the moment. Breast cancer is a club none of us wanted to be in, but now that we are here, we might as well have some fun!!