Monday, December 01, 2014

i've never liked rollercoasters

Are you sitting comfortably? This is going to be a long one.

In late August, during a regular appointment with my medical oncologist, I was informed that my latest brain scan revealed a tiny spot on my cerebellum, exactly where mytumour was in 2012. I was going to write that I was blind-sided but I really wasn't. There had been lots of little signs over the course of the summer that my balance was compromised. At one point, while I was with my family in New York City, I had stood up and almost fallen over, catching myself against a wall. I'll never forget the very quick glance I exchanged with Tim, before carrying on with my day. A new tumour was something I didn't want to think about and I had fairly successfully succeeded.

“I'm never going to lie to you,” Dr. G. said during our regular phone appointment, before delivering the news. He also reassured me that the spot was tiny and the situation was “fixable.”

I told family via email, as well as close friends that I had a new tumour. We told our kids at dinner that night. I was outwardly calm but inside, I felt devastated. Although I had been reassured that this tumour could be easily disposed of, I felt like it was the begin of the end. If some stray cells had escaped treatment and metastasized so quickly, then others would surely follow. This new spot might be treatable but the next could easily – even likely – be some place treatment couldn't access. I'm so afraid of this possibility that I've never been able to put it into words (I have notes for a blog post entitled “my worst fear” that I've never been able to publish).

A week after this phone call, Tim and I went to the cancer centre for a brief appointment with my medical oncologist, followed by the radiation oncologist who'd treated mewith the Cyber Knife after conventional surgery (we refer to him as the Gallic Shrugger because of his eloquent non-responses when we were planning treatment in 2012). This time, Dr. GS dropped a bombshell: It was possible that the new spot was not a tumour but necrotic (dead) tissue caused by radiation. He told us that necrotic tissue can grow and tends to appear 3-18 months after treatment. He explained that even my wonky balance could be explained away by scar tissue building on my cerebellum.

We were stunned.

And giddy.

I might have had a glass of wine with lunch.

A week after that, we met with Dr. S., the neurosurgeon I liked and trusted so much in 2012. It was hisadvice that we eventually followed for treatment and he performed my nine hour brain surgery. We always wait for hours to see him but it's worth it. This time, he'd shown my scans to several other doctors. He said that while my case was “perplexing” (not something you want to hear from a medical professional), they were fairly confident that the spot would turn out to be necrotic tissue or easily removed by surgery. He suggested that we wait a few more weeks and do another, more precise scan that would also measure activity (which might identify a growing tumour, versus inactive, dead tissue).

Four weeks later, I had the brain MRI. A week after that, I received the good news: my surgeon was prepared to say that the new spot on my brain was very likely necrotic tissue. No treatment is necessary at this point, unless I start to feel unwell. We'll just make sure to monitor for any changes. I heard the good news from all three doctors in separate appointments. Each, endearingly, was practically jubilant.

Oddly, I was not. I was definitely relieved but it all felt anti-climactic. We didn't even celebrate. I felt embarrassed to have to go back and tell everyone that I didn't in fact have a tumour (I know this is ridiculous. This news was extremely well received). Surprisingly (or perhaps not), I mostly felt tired and angry that we'd been put through this trauma.

I'm mostly over that now (but not entirely) and I've trying to immerse myself in the things in my life over which I have some control. Until today, I have not felt able to share this story in this space. I haven't felt much like writing at all. I've finally just decided to spew it all onto the page because it feels somehow dishonest not to have blogged about it.

It's done now.

Time to exhale and move on to the next thing.


Catherine said...

Thinking of you, Laurie. Take care of yourself and thank you for sharing your news. I am glad it is nothing, but realize this crap is so dn hard to cope with.

tccomments2013 said...

dear Laurie,

I'm so glad you were able to write it out to both share your good news and to help you have the catharsis of getting it out and into this post. I can't even imagine how difficult this has been for you. along with a big exhale, I am sending you many warm hugs...

...with much love,

Karen ooxoo

bibliogrrl said...

Oh Laurie - I can't even imagine.

I'm so glad, though, to hear that it's nothing.

I think of you and your family pretty often. Hope you have a lovely holiday season. <3

laurie said...

Thank you. Your comments mean more than you know, probably. It was so hard to put into words, I feel so much stronger, knowing there are people who get it.

JoT said...

Hear, hear. I must add, Laurie, that even though we saw each other a few times during this period, you still always wore your trademark smile and good humour. You have style and dignity, my friend.

Bob said...

This is your journey. You get to react to it exactly how you feel like reacting. To me, it's like getting hit by a car, getting up, seeing ANOTHER car coming at you, but then it swerves out of the way. It's good news, but you don't get up and dance a jig 'cos you didn't get hit by another car, knowwhatimean?

Your reaction is your reaction, and you have every right to it. I, for one, have the privilege of simply saying: "Whew, I'm glad that in the end, Laurie got some good news."

laurie said...

Oh, JoT. Thank you. I'm glad to hear that. And Bob, that is EXACTLY it. I'm stealing that metaphor. xo

livinwithit said...

Thank you for this. I, too, was very frightened by what turned out to be scar tissue from radiation performed 18 months prior. My issue was in my ureter, easily fixed with a stent.

laurie said...

So you know exactly how this feels. Did anyone warn you that could happen? I'm glad that your situation was reasonably easy to resolve but sorry you had to go through the fear.

Jim's Girl said...

I'm on a bit of a roller coaster ride myself right now and hoping Dr. G will settle things down tomorrow. I really get Bob's analogy. Let me say I am relieved this turned out to be scar tissue for you. You're not done yet. ~ Kate, of Kate Has Cancer

laurie said...

Kate, I don't like that you are going through this at all. I hope that you will get the news you want from Dr. G tomorrow. xo

Joanna said...

What absolutely stellar news. Personally, roller coasters make me sick so it feels great when the ride is over and I can get onto solid ground. I hope the ground gets very2378 solid for you. The reminder that the cancer could be lurking is just an awful thought--but it is possible that there is no cancer lurking. I hope so.

laurie said...

Thanks, Joanna. I hope so too.