Sunday, June 28, 2015

update on the fly

I am finally feeling like myself again. I realized that today, in fact, despite the fact that I have a cold, gifted to me by my children.

Since I last wrote, I had a wonderful week in Florida. I then attended my son's Grade 6 "leaving ceremony" and had treatment.

Today was spent attempting to get ready for a little family vacation. There is so much catching up to do that it seems a little silly to be going away but it will be good for us.

The neurosurgeon says all is well. No heavy lifting or dyeing my hair for three months. My head still hurts enough to need Tylenol a couple of times a day. I have an MRI at the end of August.

I rode my bike to an appointment this week. It was just four minutes away but I forgot my lock so I had to come and go twice. It felt really good.

This week will involve some long walks. Maybe I'll even start running again. 

I need to talk to my oncologist about what might come next. I need to stop worrying about what might come next.

I need to enjoy the normal.

Monday, June 08, 2015

others' eloquent voices

I was actually doing much better between when I blogged last time and when I went in for CyberKnife radiation last Thursday. I was walking and eating (and had even been out for dinner once and gone to book club). I was still needing to rest a lot but I could see the improvement in every day. And that was heartening.

CyberKnife was a major setback. I remember that it was last time, too (so much so that I never really wrote about it - just wanted to move on). That's just how it goes for me, I guess. I had brain swelling, headache, nausea, loss of balance, fatigue (yet little sleep) and a very odd taste in my mouth.I still do. But the light is at the end of the tunnel (I think it took a week last time and it was been 4 days) and I will soon be able to concentrate - and to live again. I know it.

Meanwhile, yesterday was "National Cancer Survivor's Day" in the US (and supposedly around the world, including in Canada). I missed it but lots of people with mets and who post about mets did. Here are three good ones. These are particularly eloquent. Something to think about.

National Cancer Survivors Day® & Why I’m Just Not that Into It (by Nancy Stordahl at Nancy's Point) 

Not a Survivor (by the Cancer Curmudgoen at The Cult of Perfect Motherhood)

The Trouble with "Survivor" and the Lack of Boundaries (by Susanne at Metathriving: the blog) 

Friday, May 22, 2015

twilight zone

Week two was harder than week one. This is partly because I am more impatient and partly that I think this is what happens at week two. It's two steps forward, one step back.

I had my staples out on Tuesday. And then slept for hours.

I'm walking a little further every day.

I still have trouble concentrating and haven't read anything. I have a writing contest to enter for the first time and I am not sure I can do it.

I watched Baby Mama this week, finished Brooklyn NineNine and Midsomer Murders.

My head hurts. Apparently it's quite swollen. I'm also told there are sutures inside my head, which is kind of weird.

Last week I had the CT scan for Cyber Knife radiation. I made them double check that they could do it and make the mask, despite the fact that I still had my staples. They told me it was not a problem. Today I got a phone call - cyber knife is re-scheduled and I have to go in next week for another CT scan because they can't use the one with the staples.

I am in the twilight zone.

Monday, May 18, 2015

for tim

In 1991, Tim and I, newly in love, had just moved to Toronto. Very soon after, he left on a pre-planned trip to the West Coast of the US and Canada. When we were re-united three months later (an eternity when you are 24), I had my own home, my own friends, job and way of doing things.

We were still madly in love. We joined up some things but continued to lead our own lives with separate interests and friendships in addition to the ones we hold together. This is why it struck us both as so very funny when, on our wedding night in 1996, after all the madness was over, I got quite drunk on all the left-over free wine (our guests were not big drinkers; my friends and I got pretty plastered).

I remember sitting in the stairs at the Arts and Letters Club, in my boots and party dress, head in my hands and saying to Tim, "You do the thinking for both of us."

We both knew I meant pay the bar-tenders and the venue but to say it on my wedding night, after all that had come before, struck us both as highly amusing.

Flash forward 24 years, through an unbelievable amount of change and trials we could never had imagined. When I awoke from 9 hours of surgery, the very first words out of my mouth were "Where is my husband? I want my husband!" - and I would not shut up until they let him come to me.

With all the drugs in my system, the very first and only thing I wanted was this one man. There will always be so much more to both of us together and on our own but that I would say those words when I woke were pretty damn definitive.

Poor Tim. He's stuck with me.

Saturday, May 16, 2015


Waiting for surgery
In the end, I was in surgery for 9 hours. It was hard but every day was a little better. And by Sunday night, I was home.

7 inches of staples

Dr. S doesn't shave his patients before surgery.

A shiner that appears to have been caused on the inside.

I have no idea why there are staples in my forehead.
All three spots were biopsied and then removed. The one at the original site (that has caused the roller coaster we've been on since the summer) was necrotic tissue. So was the new one that had just appeared, not too far away. But the other one, the one nearer to the brain stem that was a bit hard to see from different angles? That one was breast cancer.

It's gone now and I have been fitted for a mask and will have cyber knife radiation on May 26.

One thing I have come to realize is that all of this is as much of an art as a science. There are no specific directions. But I'm here. 

I'd better heal well and then make the best of it.

Wednesday, May 06, 2015

it's on

Tomorrow morning. I have to be  there at 6am. Surgery scheduled for 8am (when Tim will be kicked out of the hospital and forced to go to Costco).

Tim will be updating, as he has news on Twitter (as he says, his stream will now be news of me and how much he hates the drivers at Lansdowne). Don't look for too much too soon, as the surgery has been booked for 7 hours, so he's unlikely to have news between when he leaves me and at least 3pm or so (last time it was 9 hours. Sometimes, it takes longer and it doesn't necessarily mean anything went wrong).

Tim will likely have biopsy results of all three spots once the surgery is done but I have asked him not discuss this until he and I have had a chance to talk.

I'll be in the hospital for 3-5 days. I should be ready for visitors by Friday but please check in (over email or text) before coming, 

Wish me luck. See you on the other side.

Tuesday, May 05, 2015

2 more days in the sun

Yesterday, I had the best massage of my life. During my appointment my phone was off. When I turned it back on, there was voice mail.

My surgery was delayed for two days until Thursday, May 7.

Maybe it was the massage or maybe it was the chance to have two more days to enjoy the beautiful weather we have been having but the delay didn't bother me at all. It helps to remember that not much bumps a brain tumour - whoever had surgery instead today must have needed it very badly.

So today, I worked my way through my to do list, walked the dogs, puttered a bit and had a visit with an a old friend. We had a wonderful dinner, ate Dilly Bars in the back yard and just hung out. It was good.

I can fill my anxiety building again and I know the inevitable was just postponed but it's been nice to have a little extra time.