Monday, April 13, 2015

so this happened

On April 1st, I had a brain MRI

Then, last week, the very competent secretary who works with my neurosurgeon, left me the following message on my voice mail: "The written report is not yet available but Dr. S. has looked at your MRI and he says that it looks better. He says he doesn't need to see you but that you can make an appointment to see him if you want. He wants to do another MRI in three months."

And that was it.

Yes, it's good news. Yes, I'm relieved. But I'm also confused.

How is it "better"? Has the mass stopped growing? Become smaller? Is he now convinced that it doesn't have to come out? Has the other reported mass (deeper in my cerebellum) disappeared?

I called the secretary back the next day but she had no further information. She did offer to send an email asking for the written report to be expedited.

I still don't have it.

It occurred to me that the radiologist (who writes up the MRI reports) has been the most pessimistic player in this game I've been involved in since late summer. His report prompted Dr. G to tell me I had a new tumour (the radiation oncologist and neurosurgeon weren't so sure and, after more testing, decided it was necrotic - dead - tissue caused by radiation). 

It was the radiologist who wrote that I had a recurrence and a new tumour, most recently.

And the radiologist wrote the report that I saw at appointment with the neurosurgeon on March 12. Dr. S was concerned enough to suggest I was going to need surgery but not convinced that we were looking at a new tumour. He was outright dismissive of the existence of a new tumour, deeper in the cerebellum.

Now that Dr. S has put off surgery, at least for the next three months, I need to know what the radiologist (Dr. Doom-and-Gloom) has to say.

Tim and I have both noticed that oncologists and surgeons seem to have little respect for radiologists (it's like they barely graduated from high school, let alone medical school). Still, we'd like to get our hands on that written report.

I've had to sit with this information for a bit before I could write about it. This is partly because it's awfully difficult to explain. I've done my best but feel free to ask questions in the comments or contact me directly. 

It was also a shock.

And I was a little embarrassed. First I have a brain tumour. Then I might not. Then I don't. Then I do. And now - maybe not?

I feel like the Boy who Cried Wolf (the Girl who Cried Tumour?), except that I haven't been playing at any of this. And I know that no one who cares for me is actually going to be disappointed that I'm not getting ready for imminent brain surgery.

I want that report. I want the results of the bone scan I had the next day (I'm trying not to be worried that I can't get a nurse to give me those over the phone).

And then I want to try and live my life to the fullest, with all it's ups and downs. Will you help me?


Caroline said...

Call your neurosurgeon's office again and ask to have the doctor call you and explain. Good luck.

zoom said...

Yeah, I agree with Caroline. They've put you through all this, fortunately for probably nothing, but they should at least explain to you what's what. And don't ever worry about being "the girl who cried wolf." That's SO not you. And cancer is a winding journey with weird little twists and detours, with many professionals driving the bus, so odd things often happen. But still. You have a right to celebrate the good news without any lurking don't feel weird about asking your providers for explanations and evidence. (I'm thrilled with your good news, by the way!)

Andrea said...

I'm so glad you are healthy and well. Onward and upward!

(ps. Maybe instead of the ack-looks-like-wolf-crying imagined mind game, it might be more fun to play the imagined mind game of how all the love and good vibes of your huge gang of Laurie-supporters is magically undoing any badness each time you report it to us?

Or maybe not. . . You wouldn't believe the wild mind-game imaginings I tell myself when I need to talk myself out of an automatic worse one)

Anonymous said...

I think it is insane of your neurosurgeon to it to his secretary to deliver this sort of information to a patient. She's not a telemarketer trying to sell magazines, she's an untrained person delivering very important news about a highly complex medical condition about which she knows nothing. I don't know why the surgeon would think that is OK. It's not OK. You are totally within reason to call your neurosurgeon and ask for a conversation about your latest results and what they mean.

And, nobody could think you're crying wolf -- you're being told that you do/don't/do/don't by off-harmony Greek Chorus of radiologist/neurosurgeon. I'm glad the radiologist seems to have it wrong!

laurie said...

I'm waiting on the written report and then I'll decide next steps. Unfortunately, I think talking to Dr. Sinclair will mean going in for an appointment and I don't want to put myself through the wait until all the info is at hand.
The secretary who works with the neurosurgeon is brilliantly competent and I trust her to relay information and to be honest about what she understands. She made a judgment call about leaving me a message (based on her experience of me), which we discussed the next day and for which I am grateful. I'd rather know information as it becomes available than wait for the neurosurgeon to have time to speak to me. And if I'd waited on the written report, I'd still be waiting.
And Andrea- I like your mind games. :)

Lene Andersen said...

If you have to go through the roller coaster, so will we. The least we can do is keep you company on the ride. I like this part of the ride, by the way.

I think it's a good idea to ask for an appointment with the neurosurgeon, but as you said, not until you have all the information.

Life is crazy. Really glad you have such a huge gain supporters who are doing magic for you. :)

Catherine said...

Hi Laurie,

I am just catching up on you, Blog Out Loud had me thinking of you and our reading last year. :)

So sorry to hear you are dealing with this stuff again. I'm thinking of you and your family as you go up and down on the coaster.

laurie said...

Thanks all. I know that every one of you understands this all too keenly. I'm glad I'm not alone but wish we didn't connect over something like this. xo