Today gets a second post because I'm punchy and tired enough that I'm actually dealing with some of this stuff now and I don't want to forget all this.
On Monday the doctor asked me to come in. I went and they took a sample of my blood. On Wednesday she asked me to come in again to find out the results. I got there for my 9am appointment and at 9:30am the doctor arrived. I overheard her administering chemotherapy to all of them, nurses were asking things like; "How much do you give with this, 50 or 100ml fluid?" She replied "100ml", to which the nurse said "Oh no, I've already started the IV with a 50ml bag!" and she quickly eplained to him how to add another 50ml bag in so that the patient wouldn't be receiving the wrong dosage. Stuff like this went on for over 2 hours. Finally she comes in to the room to ostensibly run an EKG and simply says to the nurse; "You do this, then print out the results and give them to me." So the nurse does and half an hour later the doctor sticks her head in finally and simply says "You're young so this is all fine, don't worry. You're healthy." She literally only glanced at the print out for a second before saying this, so that was a bit scary. Then I ask about my blood test from Monday. "No" she says, "We didn't do a blood test on Monday, you're confused by the neulasta injection we gave you on Thursday." I insisted and she pushed back harder, getting the nurse to confirm it. The nurse dutifully agrees with her, then laughs at me telling me that the chemo is making me confused. Being alone in this I have no choice but to let them take blood again.
The blood tests came back and as I said in my entry on Thursday, they weren't great. So I email my doctor at Cedars just to let her know and she replies that she wouldn't even bother with blood tests in the first week, that there is no way to tell if the neulasta is even working that early and I need to get tested much closer to the day I'm getting chemo. That's what I'm going to do now anyway, I have to because we need to find out if I can handle more chemo and if the white blood count doesn't come up, we'll have to wait.
So it all nets out to a similar result. Except the reality I live in netted out with two extra trips to the doctor, (one of which I had to wait over 2 hours for while feeling terrible and having zero immune system) and 4+ tubes of blood I really can't spare right now since the chemo is eating it all.
I'm sticking with this local doctor for the next treatment, but this cannot go on again. I have to be much better about noting these kind of events and the problems they cause, but more than that, I have to head them off at the pass, stop these kind of things happening. I think I can do this in the following ways:
1. Be more assertive.
I often simply nod and smile politely when doctors or nurses tell me something that's wrong. I want to avoid bothering these busy people and I want to avoid annoying these very dismissive people who seem to hate me already just because I'm a patient and it's a pain in the ass... So in future I must be much less acquiescent and more forthright.
2. Take better notes.
The only way to make these people believe something is if I have a written document. The only way to hold them accountable after-the-fact will be to have a written record of everything I've taken and everything they've done. I have notebooks, I have this blog, there is no reason not to be even more scrupulous in my record-keeping.
3. Ask more questions.
If I'm told to take a blood test, ask why and what for. If they tell me to come in on a day when it looks like they'll be busy, ask for a different day for an appointment. If I don't understand some results, I can get more information from a family friend who was a breast cancer surgeon for many years, or my doctors at Cedars. If there is any change in my health, my doctors at Cedars seem perfectly happy to keep me informed and answer questions, so I'm going to keep sending them on.
Three things, eh? I thought there might be more I could do... ah well, they're pretty big things and I think it'll be enough (or it won't and I'll die and hey, it's been nice knowing you, world!)