Thursday, June 30, 2011

how i've changed

When I was a young adult, I definitely considered myself to be an extrovert. Then, in 2007, a year or so after my cancer diagnosis (and after being on leave from my job for most of that time), I did the Meyers-Briggs test. The person who explained my results to me said that mine was the most even split between introvert and extrovert that she'd ever seen.

Fast forward to last weekend when I attended the PAB conference. Walking in the door on a Friday night to an environment where it felt like everyone already knew each other was terrifying. My chest tightened, my breathing became shallow and I felt something between "slightly queasy" and "I think I'm about to puke my guts  out." 

I texted Tim, "This is so hard" and sent out similar messages to the Twitterverse (I will be forever grateful to Flutter for her words of comfort and encouragement).

And then I settled in for a great conference. Did I hide behind my Blackberry? Yes, lots. Did I sit by myself instead of joining other folks? Most of the time. Did I go on the evening boat cruise? I did not (my poor brain was too tired from all the big ideas and and the constant exciting but draining stimulation of the day). But I stayed and I learned and during Saturday lunch and over a couple of breaks I forgot to feel awkward and had a really good time. I even stood up to ask a question on the last day (although I forgot the question when I had the mic in my hand. I found something to babble about). For the most part, I think that's good enough.

Paralyzing anxiety disorders run in my family. And I know that the more you give in, the worse it can get. And I know that I've missed out on some truly wonderful experiences over the last couple of years because I've been too scared to go. I confronted my fear last week end. And I'm proud of that.

Next up: Blogging Out Loud Ottawa. Every year, I've found a reason not to go. This year I'm going to be there (hold me to that, would you?). There will be people I know and like. It will be fun. All I have to do is get myself through the door.

Monday, June 27, 2011

mind blown

 PAB2011 group photo by Maurizio Ortolani, uploaded to flickr by Martin Jones.

A chance encounter on Bank Street with my friend Andrea Ross led to a plan for a dog walk, which led to a conversation about "PAB", which led to me having my mind blown.

The conference is called PAB 2011 (short for Podcasters Across Borders), and is for anyone who is a creater of "content" of any kind, using any medium. You don't have to know a thing about podcasting to attend, just an open spirit and a readiness to share and absorb ideas. It took place this past week end (June 24-26) and my brain is still very, very full.

This year's theme was "Your story needs to be told. Well." As with every year for the last few, the venue was the wonderful Fourth Stage of the National Arts Centre (no fluorescent lights!) and the setting was intimate. There were two longer keynotes and many more 5 minute "jolts" (this link is to Andrea's amazing jolt from last year, which I have quoted many, many times), juxtaposed with 40 minute presentations and questions from the audience.

There was so damn much to take in and almost as much to tell that I'll be brewing blog posts for the next few days (which will make a change around here. I've been an unmotivated blogger of late). For now, I'll just say that my brain is resonating like the inside of a bell.

I am very, very grateful. To Andrea for her friendship and inspiration, to Mark and Maureen for donating a ticket they could'nt use (and asking for nothing in return) and to Mark and Bob for concocting, creating and coordinating this indescribable thing that is PAB.

Friday, June 17, 2011

short term planning

I kind of left you in suspense yesterday.

I was sitting an exam room, waiting to see my oncologist to discuss whether I could continue my break from chemo. 

Here's what happened next:

We waited.

We played a little Lexulous.

I knit. My hands shook a little.

And then the door swung open and Dr. B. entered the room. 

Dr. B. is not my oncologist. The cancer centre has a title called GPO (which I assume means general practitioner - oncology) for doctors who work with the oncologists. I hadn't seen Dr. B. in more than a year and without hesitating, we hugged each other - something I've never done with any doctor. She's wonderful and she's the only doctor I trust as much as my oncologist.

After a physical exam (liver is where it should be and the size it should be. Chest sounds fine) and looking over my bloodwork (everything normal), we had the following conversation:

Dr. B.: "I'd bet you'd like to extend this break from chemo."

Me (nodding vigorously): "Yes!"

Dr. B.: "For the summer?"

Me: "Or longer? I'd love to think about longer term plans."

And...she shook her head. She said, "When it comes to metastatic breast cancer, there are no 12 month plans."

While it may seem like forever to me that I've been at this, it really is still pretty new. And as I've written before, many times, there is just too much uncertainty to make any longer term treatment plans or even to be absolutely certain what choices are the right ones.

It was very good having Tim there, though, as he brought a different perspective to the table. I wanted to choose between a short break and an indefinite one. Tim's concerns were more about the risks of taking even short breaks from chemo. He loves me and he wants me to feel well but also to stay healthy.

But Dr. B. explained that the break from chemo is not just to give me some respite from side effects (although I needed that, both physically and emotionally) but to help my immune system and bone marrow to rebuild so that chemotherapy, when I need it again, will continue to be effective. She also said that most stable metastatic breast cancer patients need to take breaks long before I did.

This was a breakthrough moment for me. I've been feeling like my body failed me by becoming run down and developing more side effects. I felt like I was wimping out by feeling an emotional need for a break. I felt that I just wasn't strong enough.

I felt ashamed.

However, it turns out that I'm not taking an irresponsible risk by taking a break from chemo. I'm readying my body for whatever lies ahead. And I'm not weak. I've been doing this for more than five years, while continuing to live my life. I'm actually pretty damn tough.

It was a great appointment. I feel relieved of an awful lot of guilt I didn't know I was carrying around. I feel hopeful. And my step was a little lighter today.

So for the next three months, I'll continue on the Herceptin. In early September, I'll have a brain scan (because Herceptin doesn't cross the brain blood barrier) and an abdominal scan. I'll do more bloodwork. And we'll plan for the next three months.

Thursday, June 16, 2011

not so jaded after all

Yesterday, I had an appointment with my oncologist, the first since our decision that I should take a break from chemo and do Herceptin only for three months.

I usually do my appointments over the phone but I decided to go into the cancer centre so that I could have a physical exam and meet with him face to face. Also, I wanted Tim to come with me, so that he would get the same info as I did first hand and have a chance to ask questions.

One of the great things about doing appointments on the phone is that I can carry on with my life around the house as I wait for my call. I was reminded of this after waiting first in the waiting area and then in the exam room for nearly an hour.

But it was worth it.

The first person I met was the nurse who works with my oncologist. It was the first time we met face to face. After checking me in, she hesitated for a moment, then looked me right in the eyes and said, "I read the article you wrote for the CBCN newsletter (after the conference I attended last fall). It was wonderful. You are very inspiring."

I hope that I sounded as pleased as I felt when I thanked her. It always means a lot to me when someone is moved by my writing but to hear that a nurse who hears all kinds of stories every day was inspired by me...I was floored.