Friday, October 4, 2013

After appointment

So here's the news you came here for - after the ultrasound, the radiologist did not feel that a biopsy was needed. Basically I have a few enlarged lymph nodes but not significantly enlarged enough to be of concern, so I walked out with no bandaids and a lot of confusion.

It's good news- we're basically ruling out thyroid cancer all together. I remain in remission, 16 months. Woot! Still, I stood there feeling very conflicted and confused. I have spent all afternoon reflecting on this and I realize that the lack of biopsy means no thyroid cancer, but doesn't rule out anything else really. Which is okay too, I think... I'm not sure. I'm sitting with it.

It makes me feel like maybe I'm just making mountains out of molehills, it makes me feel bad for worrying people before knowing for sure there was something truly to worry about, and it leaves me confused about where to go from here.

I did get a response back after my strongly worded email to my doctor- from her LPN, who suggests that I call to make a phone appointment with my doctor to discuss my concerns. I have to admit, after the message I sent, I kind of expected a little more than that and I'm pretty angry to be left flapping in the wind with worries and pushed through the system like a number. Am I wrong to think that a little personal involvement, especially after my concise statement of concerns, would be appropriate? I don't think so.

I woke up this morning thinking that I should just switch to a doctor who has a little more sensitivity. Dr. B really has great qualities and for the day-to-day stuff I've been pretty happy with her care. She's not the best doctor I've ever had but come on, no one's perfect. However, the struggles I've had now, twice, in dealing with her or her office, is really over the top and over the line for me- so I think I will move on to another family practice doc and try my luck elsewhere.

What I wanted at some point, in retrospect, was for one of these providers to say, "Here are some of the things that could cause the symptoms you're having." I didn't get that, not even a guess. No one even said, "Do you have cold symptoms?" My enlarged, achy lymph nodes were a concern to everyone until the night before my ultrasound when suddenly they became unremarkable.

This is the kind of emotional roller coaster no one needs. So now I wonder, and worry that I'm wondering too much, if we're missing something. I want to sit down, paint the whole picture for someone who is willing to think through what might be going on, and run the tests necessary. I want to talk to someone who is okay talking with other people on my care team to get a bigger picture. I want to talk to someone who understands the significance to dropping words like lymphoma casually in an office visit to a patient who has symptoms of it, and who doesn't fall back to medical lingo when questioned. I feel like those are baseline things to look for.

So that's where I'm at. I'm happy it was not lit up for cancer, very happy. At the same time, I still don't know where to go with this, and I'm not sure if I should just let it go, see how I feel in three months and come at it again, or if something is going on where that would be some serious lost time and be impactful. I don't know! I just don't know.

For now I have a follow up appointment with my endocrinologist on Monday where we'll talk through my labs and ultrasound. She'll surely tell me that I'm clear of cancer and that maybe my meds need adjusting or something. I guess after that, I find another family practice doc and lay it all out to her and see what happens from there. Yay! and... ???!

In the meantime, I feel somewhat relieved, I got to the milestone. I got to the ultrasound and even though I was so scared I thought I was going to faint while walking down that hallway, here I am, with a little more info, a little more piece of mind. It's a good day.

1 comment:

  1. So sorry you don't have answers yet and the medical system rather sucks! I have invisible illnesses (one is Ehler's-Danlos Sydrome and that can cause significant problems.) I've gotten very good at doing my own research and just going from doctor to doctor until I get the tests I want or find ones who listen properly and act accordingly. It is very frustrating but something I've had to live with for years. I believe it is important that if you know something isn't right, you keep searching. Hang in there & do your best to stay positive!!! (((Hugs))), prayers, and positive thoughts!