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

healing

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.

Friday, May 01, 2015

pre-op

Some people need to gain some interpersonal skills.


Yesterday, morning I had my pre-admission appointment at the hospital.

First I checked in with admissions, gave them my insurance info, requested a private or semi-private room, if available and declined to rent a TV or phone (note to self: make sure to pack phone and charger and load up tablet with mindless videos).

Next we went to the pre-surgery unit (not it's official name but you get the idea) where we met with a bunch more people (last time, I remember going from room to room instead of having folks come to us but my memory of the last time is extremely untrustworthy). I got weighed, peed in a cup, had blood drawn (they aren't allowed to access my port so had to get a vein my arm to work - ouch!) met with a pharmacy tech, a couple of nurses and an anesthetist.

I'm not allowed to take vitamins on the day of surgery (fair enough), no "herbals" for seven days ahead of time (that includes my precious tea with valerian and melatonin) but I can pretty much go nuts with the Ativan. 

The surgery will be about seven hours long (give or take. Last time they said six hours and it was nine. This was extremely hard for those waiting to hear how things had gone. I was oblivious, as this thankfully not the kind of brain surgery where you need to be awake). The nurse with whom we met says she thinks I'll probably be Dr. S's only patient that day. I guess this is a good thing.

We were at the hospital for almost three hours. When we were done, we went out for lunch and then I came home and (despite many cups of coffee) slept like the dead for almost two hours. It's also a treatment week but this appointment really knocked the stuffing out of me.



Saturday, April 25, 2015

it's deja vu all over again

I've been struggling to write this post for the last couple of days. Two nights ago, a friend of my son's was saying that he finds it much easier to write when he's writing to someone. My spouse shared that he once had a university prof suggest that he get over writers' block by starting his essay as a letter.

To that end, I wrote an email to my loved ones today and, when it was done, I decided that it was clear enough to share here, as an open letter to anyone who reads this.

To: A whole bunch of people I love.

Subject: Surgery May 5. For real this time.

Hello all,

I saw my neurosurgeon on April 22 and he has decided that brain surgery is my best option right now. It's been scheduled for May 5.

The communication around all of this has been terrible (this is the same MRI that he said "looked better" a short while ago). From what I am able to understand (Tim, feel free to jump in here), Dr S (the neurosurgeon) took the images to a different radiologist who he trusts after feeling that he was getting inconsistent information. The two of them decided that it makes sense to take action.

I now have 3 spots on my brain: the mass on the site of the original tumour, a tiny spot deeper in the cerebellum and a new one, close but not attached to the original site (this is the one that is really of greatest concern). From my reading of the MRI reports, this one is either on or very near the lining of the brain.

On May 5, the surgeon is going to attempt to completely remove all spots and then biopsy them. While there is slightly higher risk of complications this time around, the recovery time will likely be a bit better than last, if all goes well.

The lousy way this has played out means that my fantastic plans for this spring have been scuttled. I'm still trying to figure out how much (no bike trip 3 weeks after brain surgery...) and to figure out how to organize our lives so that things go as smoothly as possible.

The kids know as of last night (didn't want to tell Daniel on his birthday) and they are amazing young men. Truly. And Tim - I actually don't have words - is beyond patient, loving and supportive. This is so hard on these guys but they are very good to me.

My pre-surgery MRI is on April 27. I have treatment April 28 and my pre-op appointment on April 30. If memory serves (and there is much I don't remember about last time, including the entire first season of "The Good Wife" I watched in recovery), I won't find out the time of my surgery on May 5 until the day before.

I think you know everything that I do, now. Please, please forgive the group email. It is so much easier to get this out once. I'm stressed but in a reasonably good place and happy to try and answer questions or just chat.

Thanks and with much love,
Laurie

p.s.: It's actually a nice feeling to need to send out a group email. I have so much support. It's good to remember that.