Wednesday, June 27, 2012

Holy crap what a day!

Well, this will take a bit of back tracking but it's a captivating story with a good ending so hang in there.

When I had my surgery on Friday, my surgeon stopped in and said that I have the follicular variant of papillary carcinoma. This basically doesn't mean much as far as a change in prognosis or treatment, so whoopdee doo. She said that when she went into my neck that the lymph nodes looked really good so rather than taking all on the right, and some on the left, she just took the right ones (nearest the tumor), and the whole thyroid.

In the midst of preparing for surgery I really considered about radiation, and after a chat with my endo and my surgeon I decided that if I don't have cancer in my lymph nodes, I wouldn't have radiation. She said that the lymph nodes she pulled out looked healthy but that we'd need the pathology report to know for sure. She said it would be in on Wednesday and I'd be able to just call to get those results. As she had come in on her day off, her partners would be around to care for me.

Fast forward to today- it was time to make the call to get my pathology results. I started to feel a little nervous- because I really really don't want radiation and I knew that would just be one more hard step in this journey that I didn't want to have to take. It started to hit me that I might actually have to say yes to it and I was just getting a little bit nervous about getting my results, and wishing Randy was home.

Now, my surgeon told me to call and get my results on Wednesday, so I called who I always call- my primary care doctor. I belong to a big HMO that is all interconnected, one huge network, so we're talking about every provider I see being able to see and interact with my entire medical record. Consulting nurses can see emails I've sent my providers, times I've opened my emails from them and viewed lab results online, the whole shebang. Fully automated. I'm told to call for results, I call my primary care doc, just like I always have for everything else.

I call and say that I am calling to find out the results of my pathology report, and the woman who answers basically says she's not able to tell me over the phone as she's not an RN or MD. She'll speak with the RN about it and call me back. Let me just say here that the ONLY time I have ever, ever, ever been put off from getting results right away, over the phone, or released to my online record, was when they were outside of normal limits, or flagged for some reason. So when she calls back and says that the RN doesn't feel comfortable giving the results over the phone, I freak the fuck right out. I explain to her that all I need to know is if they found cancer in my lymph nodes- I already know I had thyroid cancer, because as you can hear in my voice ma'am, I just had surgery FOR the cancer. She just said she was very sorry (in a scarily sympathetic voice) and that we'd set up a phone visit with my doctor at 3:30, which was 2.5 hours away. Okay... fine, I can stay busy till then.

But then my mind starts wandering of course, why wouldn't they just tell me over the phone if there's cancer? The only reason would be if there's another kind of cancer - one of the bad ones. Oh my god, it's one of the bad ones, and I only have months left to live! Oh my goodness I'm going to have to get chemo, how will we tell the kids? Wait, calm down.... breathe... there can be other possibilities that you aren't aware of, don't get crazy now... but whythehell did she sound so sympathetic? Was that like, "I'm so sorry you're going to die soon" sympathy or "I can't help you and I know you're upset" sympathy?

So, continue to spin until 3:15 when I get on Skype with Randy and we wait together for that phone to ring. 3:30 ticks by. 3:45. 4pm. 4:30. Now it's 5pm and I have people on my Facebook page threatening fire and pitchfork action if this doctor doesn't freaking call me, and urging me to just call them- so I finally did at about 5:15.

The woman who answers is a nurse who knows who I am personally, we've spoken many times, and she's always been super supportive, creative, calming and awesome. Today, not so much.

Me:  "I had a phone visit with Dr. B at 3:30, it's 5pm and I just haven't heard anything."

Her: "Oh, well... she does all her phone visits at the end of the day."

Me: {Mouth agape for a few seconds}... "Um, someone made an appointment for me at 3:30. I am not waiting for test results until the end of the day when I've already been sitting here for almost two hours expecting the phone to ring with my results. I've already been waiting since 1:00 this afternoon and put off, I am NOT going to wait any longer.

Her: "Well.. you've been her patient for a while, right?..."

Me: "Yes." (I'm getting really, really angry now.)

Her: "Well, you know how her appointments run........" (as in, they run long, and she's always, always running way behind because she takes her time with each patient).

Me: "I have been her patient a long time and I understand she runs late and that's fine, that's why I waited until 5pm to call. But now your'e telling me I need to hang up the phone and wait some more because she does her phone visits at the end of the day, and if that's true, why didn't someone tell me that? Why have I been waiting all day for these results? (I start getting hysterical) I NEED SOMEONE TO TELL ME MY RESULTS RIGHT NOW!! I NEED YOU TO FIND SOMEONE IN THAT CLINIC RIGHT NOW WHO CAN TELL ME THAT IF I HAVE ANOTHER KIND OF CANCER BECAUSE I'M SITTING HERE ALL DAY THINKING I'M GOING TO DIE. PLEASE.please.please.please.

(Meanwhile, I'm still sitting on Skype with Randy and he's watching this whole conversation go down. He mutes me and calls his mother (who is a manager at this HMO) and all I see is him raging an cussing and yelling into the phone, because he's watching me freak out and get no where.)

Her: {She's sounding now very uncomfortable and torn, she hears how desperate and upset I am and clearly wants to help but does NOT know what to do.} "Did you try calling your endocrinologist first? Aren't they the ones who ordered the test?"

Me: "Contrary to what you might think, no one gives you a GUIDE to cancer. No one tells you 'now all your questions should be focused to this person', and when I am told by my surgeon, who ordered the test, by the way, to 'call for results', I am going to do naturally what anyone else would do- I'm goin to call my freaking doctor! And if she's not the person I should be talking to about this the person who made my damn appointment should have TOLD ME THAT and not wasted my time! Now you FIND someone who can tell me my test results, I am not geting off this phone until I know what is going on!"

{This whole thing is scaring me to DEATH- the fact I'm getting this sort of weird run around has me even more fully worried that I have the really bad scary thyroid cancer that kills you in a year, and that's after you've bought time with chemo. Why else would they not say, "Lymph nodes looked fine!" I'm getting increasingly upset and angry and emotional and now I've decided that if she doesn't find someone immediately who is qualified to give me my results I will be driving down to the clinic and raising some H-E-double-hockey-sticks!!}

Her: "Hang on, hang on. She's in a patient room right now, I'll grab her and see if we can get her on the phone right away."


So the rest of the conversation was spent with my doctor who said that I'm a T1N0Mx. Uncoded, T=thyroid and the # = number of cancer, so I have T=thyroid, 1, N=nodes, 0, and M=distant metastases, x (because we didn't scan for that).

In shorthand, one growth in my thyroid, NONE in my lymph nodes!!!

I explained what happened to my doctor and she apologized profusely and said yes, anytime I have specific cancer questions to talk to my endocrinologist. I can always call her and she'll do her best to give me the info I need, but I'd be going a more direct route to call him directly. Thank you, doc!

At the end of the day it was a series of innocent follies that led to me freaking the heck out and Randy too - which also did make getting the news that much sweeter. The first person I called was my mom, who has felt very disconnected from this whole thing (which I am fine with, I'm not close to her) but she's been so worried considering her husband died of cancer a couple of years ago, I wanted to ease her mind right away. We both burst into tears when we talked and I was so grateful that I am eased of this.

I don't have cancer anymore. Done! Done.

I'm going to post this because the next post will be more about what I've learned, am learning- so much has changed in me because of this experience and I hesitate to write it all out just yet. I want to sit in it for a while first. :)

In the meantime- thank you for visiting, and farewell, cancer!


  1. Yes! An amazing outcome, Kristina.

  2. The build up here made the climax all the sweeter. So sorry that you got the run around like that. I think someone else on fb said it best... doctors should be a patient every now and again to remember what its like. LOVE YOU and so glad you are cancer free!!!!