Friday, March 13, 2015

here we go again...

A couple of months ago, I wrote about the roller coaster ride I was on in the fall. Once you have been diagnosed with metastatic breast cancer, you are always on a roller coaster. The truth is, that even through long quiet periods, I have lived half-expecting that ride to start up again.

These are the latest developments in my own personal ride:

I have had 3 MRIs since my last post on this subject -  on December 8, January 12 and February 23. The first wasn't detailed enough, which led to the second (which I was told was "stable") and finally to the one I had two weeks ago.

I put off calling about results for two weeks, which is very patient for me. When I connected with the neurosurgeon's secretary (who had been very happy to give me results over the phone in the past), she asked me to come in on Thursday afternoon. I have been completely unable to concentrate on anything except back-to-back episodes of the Good Wife since that phone call.

My appointment was yesterday. The thing about having two days to imagine the worst, is that even bad news can seem OK - at least at first. I'll try and lay it out here at least somewhat coherently:

The spot on my cerebellum (in the site of my original tumour) has grown. 

The MRI report states that it is highly likely to be a recurrence of the metastatic tumour. It also states that there is a new spot on the cerebellum, deeper into the brain.

My neurosurgeon feels somewhat differently. He said emphatically that he doesn't see the new spot at all and doesn't believe there is anything there. He also feels that it's still possible that the patch that's growing could be necrotic tissue, caused by radiation. 

If we weigh the evidence, the spot is showing "more heat" (tumours are "hot", dead tissue is "cold") - something that could indicate a tumour. On the other hand, there is no swelling at all at the site, which is a very good sign. The only way to know for sure is to operate.

Necrotic tissue can be treated with steroids but treatment lasts for months (at a very high dose), during which a tumour would be free to keep growing. The only way to know for sure is to do a biopsy, at which point we might as well remove the mass surgically. 

We're going to do another MRI in 3 weeks. There is still a slight chance that the mass will stabilize or shrink but at this stage (29 months post radiation treatment), this is a remote possibility. It's likely that I will be having brain surgery again in a few weeks. The good news is that as I have "a trap door" into my brain, the surgeon won't have to cut into bone which will hopefully make the surgery and my recovery quicker.

If the smaller spot has grown at all, it will likely be treated with cyber knife radiation, as it's not in a spot that can be reached with surgery (but we're still hoping that there is nothing there).

We are struggling with this news and still processing the ramifications. As many of you know, brain metastasis and what it can mean is my very worst fear. Also, having been through brain surgery once, I am apprehensive about living through it all again. Finally, it is really hard to live in suspense like this for weeks at a time. I have plans for the spring and summer but at the moment, absolutely everything is up in the air.

I really hope this isn't a recurrence of the cancer. I won't know for several weeks, during which time I will work hard to find my equilibrium. Please be patient with me. I'm finding it very hard to find the words to talk about this, so I may be reluctant to do so. I'm also completely unable to imagine managing other people's emotions, which is why I'm writing one long blog post and sharing it with everyone. Tim and the boys have been wonderful but I think we're all a little fragile right now. I'm feeling protective of them as well as of myself.

Yesterday, before leaving the office, my surgeon looked me right in the eyes and said, "We're going to fix this. Whatever it is, we'll fix it." I'm holding those words in my heart.

22 comments:

bibliogrrl said...

I have you and your family in my thoughts. <3 I'm pulling for you.

Average Jane said...

I'm sending you all of the most positive thoughts I can muster.

Anonymous said...

We are all thinking of you, sending whatever positive vibes we can along with our love.
Suzanne, Marty and Moses

Lene Andersen said...

I'm choosing to believe your neurosurgeon.

Sending love to all of you.

Lola said...

Sending your support. YOU are in my thoughts regularly. As someone new to the journey of cancer I am relating a bit and routing for you BIG time. Hugs

Joanne Brennan said...

Yes, I'm going with the neurosurgeon...he is the best!

zoom said...

It sucks that you have to deal with this again, Laurie. Like Lene, I'm choosing to believe your neurosurgeon...he sounds confident and positive, and he's a BRAIN surgeon and everything. I know the waiting is awful - indulge yourself with whatever it takes to distract you.

Ann said...

Sad to hear your news, puts my celebration, this week, of 5 years survival, in the shade. As ever, a day at a time is the way to go. Hang on in there Laurie. My prayers a with you.

Elana said...

I will send positive thoughts on a daily basis. I'd also like to send some pickles...if you messenger me your address..I'd love to send a care package.

Mel said...

My heart is with you...
Melinda

Anonymous said...

Laurie,
i accidentally deleted your e-mail address. Would you mind sending me a short e-mail.
K. in Calgary

Monina Wagner said...

Laurie, you are one of the fiercest women I know. Thinking of you!

laurie said...

Thanks to you all. Your support makes me feel stronger and braver. xo K and Elana, I will send messages.

JuliaR said...

I agree - the suspense, the unknown, is the worst. My heart goes out to you.

Whatever you do, will be the right thing for you to do.

Anonymous said...

Laurie,
Being myself metastatic I do understand your fears. Are you still going for cyber knife or WBR?
To the best of my knowledge brain tumor biopsy is not simple thing like biopsying liver or lungs.
On the other hand I know someone who is still here 6 years after WBR. I am not sure how many Cancer clinics in Canada does the Cyber Knife procedures. I know that you have had it done in Ottawa.
All my best to you.
K.

laurie said...

K. we're only going to biopsy tissue, if we decide to remove the whole mass surgically (which is likely). We can't do cyber knife on that spot because it is now very high risk for necrotic tissue. If there is a new spot, I would definitely be interested in cyber knife.

Anya said...

Dear Laurie, sending positive thoughts and vibes and thinking of you...

Finola said...

Thinking of you Laurie. I think you are amazing.

Sasha said...

I wish I could find better words, but then words can't fix this, can they? Thinking of you, hoping your surgeon is right, and wishing you calm and healing thoughts for your wait, your surgery, and your recovery.

laurie said...

Your words all mean so much to me. Thank you.

Lee Ann Dalton said...

Thinking of you, Laurie...your brain surgeon reminds me of mine, who was the epitome of "Yes, risky, but I do this every day, I do it well, and I will take care of you." I did not have cancer, just an aneurysm, but it's something to hold onto, that voice of brain-guy calm. Great big hugs to you through all of this and beyond.

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