Wednesday, March 25, 2015

how much to say and how to say it: the blogger's dilemma

I'm finding my blogging constrained these days by thoughts of how others, particularly my family, are feeling. I'm especially concerned that my children could be reading, if they chose to do so. How could I possibly put my very darkest thoughts here, as well as my most hopeful, happiest, meanest and angriest, knowing that they could read these words and not understand that how I feel in one moment is not how I feel all the time?

Do I protect them or do I just be honest and know that those closest to me have the real me to talk to and reassure with my presence? Does silence actually protect anyone?

It's hard, even in the most banal of times, not to feel self-conscious - something that definitely hampers writing.

I feel a need to write but also a need to be read. I've considered password protection of my posts but that feels like locking people out when I want to be accessible. I don't even have much security on my Facebook profile because I think gives a false sense of security. I prefer to only post to the internet things that I'd be comfortable with the whole world reading. I can write, edit and even delete before posting. I am in control.

Or perhaps not. How can I know who reads and how they are affected? Are my thoughts embarrassing or even wounding to those I love? Months of silence on the blog have not meant that there has been anything wrong, just a lack of inspiration brought on by ennui and the self-imposed imposed limitations that have grown with the years.

My oldest son, who is beautiful, brilliant, funny and talented is a pretty private guy so I don't often write about him here. I have lots I could say but I respect his boundaries and don't share about him without his permission.

My youngest is more outgoing and happy for me to post photos and discuss our adventures. He's almost 12 though, so I know that door could soon be closing.

I've always considered writing about myself and my fears and foibles to be fair game. But perhaps it's not. At any rate, I'm conflicted. We'll see how it all shakes out in the coming weeks and months.

I have kept a journal for years. It's where I purge everything and I seldom feel a need to go back and re-read my words once a notebook is finished. One afternoon this winter, I threw a bunch of these journals into the fire and watched them burn. It felt very cathartic but created an awful lot of ashes. I think I'll just gather up the rest when I'm ready and throw them out with the re-cycling (I'll do it on pick up day, so no one actually has the chance to try and decipher my writing).

This blog, however, is permanent. I do know a woman whose family deleted her blog after she died but that felt really wrong to me. I want my words to live on but hat very thought makes each word weigh more heavily.

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.