Wednesday, March 23, 2016

the latest

I wrote this in the form of a letter a few days ago. Doing so has been a huge relief to me. I know that it's not the same for everyone but expressing myself in this way has been both calming and freeing.

I have sent it already to family and to friends with whom I have been speaking. It helps a lot because we can start the discussion from here and I don't need to explain from the beginning each time. Or not talk about this stuff at all, in the knowledge that they know. 

It works for me.

You should also know that I learned all this on March 4th (and suspected before because of the symptoms I was having). The news was worse than I had hoped (of course) but I have had some time to absorb and, given that I have also turned the corner on the Cyber Knife am doing pretty well.

Most of the time.





March 20th, 2016

Dear family,

Hello all. I wanted to share an email with all of you, as I am unsure as to what information I have shared with whom and, as always, find it easier to do so in writing. 

I have just had my 5th tumour zapped. The first was in November 2012, the second in May 2015. Numbers 3 and 4 were in December of 2015 and are still there but stable. The most recent was on Tuesday, March 15. As you can tell from this, things have accelerated. I have been told by my radiation oncologist that I should not be surprised to see a new tumour every time I have an MRI (every 2-3 months) for the next while.

The tumours have also moved from the tissue in the brain to its lining and present as more of a "thickening". They're also closer together, which makes them harder to zap. Since tissue can only be radiated once, this means that we are running out of room for Cyber Knife.

There is unfortunately no drug that would address Her 2+ breast cancer in the brain that crosses the blood-brain barrier. There are some amazing breakthroughs on the horizon and we are hopeful that we can keep using CyberKnife for something to become a reality for me. We met with both oncologists on March 4, after what had already been a very hard day, so we still have many questions. I do feel like I am getting really good care and like both my oncologists a lot.

We saw my radiation oncologist again on March 15, right after my CyberKnife and he showed us the images of my brain and really took his time answering questions. My next appointment with my medical oncologist is May 4 but he has said that I am welcome to ask to come in and talk to him before then and I plan to do so.

The next step in the progression of my brain mets is something called "leptomeningeal metastasis" or "carcinomamatous meningitis" (they mean the same thing). This is when the cancer cells progress from brain tissue to the lining and then into the cerebral-spinal fluid. Please don't Google this. I did and found very dire info and didn't realize it was from 2005. Lots has changed since then for the better. It's not a good diagnosis but more hopeful than 15 years ago, for sure! I will include a fact sheet or two at the bottom of this message with more info. I already have some of the symptoms, including sporadic loss of sensation in my face (I call it "facial paralysis" as I feel increased pressure and then my jaw won't open. It can make talking a challenge, sometimes with funny results)

This is a pretty good fact sheet about brain metastasis: http://www.brainmetsbc.org/en/content/frequently-asked-questions-about-brain-metastasis

This one is addresses symptoms. I have the first 7 only: http://www.brainmetsbc.org/en/content/symptoms-and-diagnosis-0

On leptomeningeal metastasis:


We are still hoping that I can look back on all of this in two years and feel relief and happiness that I am still well but we are also being realistic. I need to live in in this hope but also accept that I need to do so in the body I have for the time that it is left to me. This emotional fallout has been very hard to deal with but I have had some time (a couple of weeks anyway) and am moving towards acceptance (with lots of hope, not forgetting the hope).

In happier news, Daniel will be 13 in a few weeks and Sacha will be 18 soon after that! We have told Daniel that he doesn't need to make his decision yet whether to have a party (for his non-Barmitzvah) or a trip. We'll keep you posted. Meanwhile, we are thinking of a family vacation out west in the summer.

We have concert tickets to see Courtney Barnett for late May in Montreal with Sacha. He has been informed that he has to buy his mother a legally purchased beer. 

Having things to look forward to is making us all much happier these days.

Please feel free to ask any questions once you have read this over and absorbed but don't feel like you have to do so. I just wanted us all to be on the same page and to spare myself the difficulty of having to repeat myself.

With much love as always,
Laurie and Tim


Monday, March 21, 2016

good things



Time for another one! What would yours be?

In random order, the things that make me happy these days:

Lynn Miles.

Billy Bragg.

Tea.

Thinking about Canadian travel.

Colours.

Massage and reflexology.

My friends and chosen family (and that includes lots of real family).



My sister (because that bears repeating).

Dark humour.




Dog faces.




Tim (for 25 years this month. Over half my life).




My brain (ironically, I know).

Spring.



Tuesday, March 15, 2016

Cyber Knife is radiation (and other news)

First of all, thanks to you all for giving me all this space. It has meant a lot to me.

I'm ready for questions now and to talk about it but first I have to have lunch and then go to Cyber Knife radiation.

The name is confusing but it's radiation that can be done differently than whole brain (which is generally only done once). Each new tumour can be targeted directly in one to a few days and you can keep going for quite a while. It's newish technology so no one is certain what that means.

My first brain tumour (in November 2012) was treated with conventional surgery, followed two months later with radiation. We did the same thing in May 2015. The two tumours zapped in December (4 days that time) are still there but stable. 

So this is number 5. Every person is different but I find that it takes me a week to recover (this was hard the first time, when I was told people generally have no side effects). As with Herceptin, I am chosing to believe that this is because it's working.

It's "tricky" as they say because it's not in the tissue of the brain but a thickening of the lining. They also have to avoid the other tumours and tumour scarring. I trust that my radiation oncologist is very good but we have all established that art and science are mixed in these proceedings.

Clear as mud? Not even going to proofread but will post. 

See you on the other side.

Monday, March 07, 2016

at least i know what to expect on the table

I have a new tumour.

I will be doing Cyber Knife some time soon. I don't have a date yet but I'm not worried about that. They are on it.


Both my oncologists (radiation and medical) are not just good and smart but they really care what happens to me.

I have had a few days to take this in but have had some other (non blog related and not my story to tell) things on my mind. I have been feeling bad that I haven't explained here but I am letting that go.

Know that I am doing OK. We are doing OK. I just need a few days to rest, sleep (which I have not been doing for more than a couple of hours a night) and take care of myself.

Please don't take it personally, if you don't hear back from me about this right away. I know I am loved and supported. 

If I don't want to talk about it right now, just follow my lead.

Going to knit tonight and watch the last Downton Abbey tomorrow. 

So no spoilers.

Wednesday, February 17, 2016

inconclusive

Today's appointment did not work out as I had hoped, in that there weren't a lot of answers.

I was kind of hoping that I'd go in today, get the results from my test and talk about a plan of action for whatever is coming next.

It didn't work out that way.

I first saw a doctor who works with the oncologists. It wasn't my usual doctor and he had to be brought up to speed on where things are at with me. He was very thorough and very nice but I really wanted to feel like they were on top of things.

He had my CT scan and the attached report. There is still a spot on my liver and it's possible that it's a tiny bit bigger but they really can't tell if it's a new lesion or scar tissue. We'll just have to watch and wait.

My MRI reports were not ready.

They sent me for bloodwork, got in touch with the radiologist and that doctor looked at the MRI pictures with my radiation oncologist and medical oncologist, to see what could be determined that way.

The good news is that the spinal MRI was completely clear.

As for the brain MRI, apparently they took 1000 images and all have to waded through. The radiologist said orally that there is the possibility of a new tumour but he needs a bit more time. My oncologists say they didn't see anything they could recognize in the pictures we saw and that nothing is definitive.

It's even possible that the latest symptoms were caused by the Cyber Knife radiation, although there is not as much edema as they would expect if that were truly the case. The tumours that were zapped in December are still there but apparently that doesn't mean that the it didn't work, just that it's taking a while.

See what I mean? More questions. Few answers.

They were happy to have me take a little vacation and will see me when the reports are done, after I get back. The doctor said he'd arrange for an appointment "the week of February 27."

The cancer centre interpreted this as the week leading up to that date and now I have two appointments booked during the week that I am away. Seriously? It just can't ever be easy, it seems.

And I'm still on steroids, eating everything that isn't nailed down and otherwise revved up from the pills. 




Monday, February 08, 2016

Be. Here. Now. (an update)

I just had a bath to help me relax. 

I plopped a bath cube in the water and immediately started to worry that it was the last one and that I needed to make time to get more.

"Be. Here. Now."

Then my phone alarm went off to remind me to take the supplements that I have been forgetting. I had to get Tim to come and switch it off, so that I didn't have to climb out of the hot water. He took the phone right out of the bathroom when he left.

"Be. Here. Now."

There is a lot of uncertainty in my life right now. I still haven't had the MRI that will tell me if the Cyber Knife radiation I had in December got rid of the tumours. Meanwhile, I am experiencing symptoms that are difficult, exhausting and disconcerting.

My head hurts on the right at the front of my forehead.

I have an earache, that sometimes extends to my jaw and throat.

The right side of my face tingles from my chin to my forehead, when I stand up.

There is something wrong with my balance.

I have begun to feel a pressure behind my right eye.

I don't have all the symptoms at once and they are not debilitating. They are exhausting. And scary.

I found out online that sometimes symptoms like this can appear, a few months after Cyber Knife treatment, so this could all just be part of the healing process. I cried when I read that. Maybe someone told me that when I was treated but I don't remember.

The brain MRI was ordered for February. A machine has broken at the hospital and they are behind. It was finally scheduled for March 12. This is after I see both my oncologists to get results. 

The MRI booking office has said that only the doctor can change the protocol. The doctor's offices say they have asked to speed things up. So far nothing has changed but on Friday, they told me that if I call tomorrow (Tuesday), they might have been able to do something. It's a step in the right direction.

"Be. Here. Now."

They're also running behind in the CT scan department. My last one showed a spot on my liver, which may well be nothing. I was originally booked in for that one on March 4 (long after I was supposed to have results) but I got on a cancellation list and got that done.

When I called to confirm my treatment time for last week (so I could go to the CT), I was told that no treatment was scheduled for me. Ever. I made a few calls, fixed that and was treated the next day. I still don't know how I fell through the cracks.

My therapist says that patients who self-advocate have the best outcomes. In that case, I should do well.

"Be. Here. Now."

When I was at Statford Festival, in Ontario last summer, I bought a mug, in support of the Actors' Fund of Canada, with those words emblazoned on it. I use it alot. I like to have them in front of me.

It's so easy to feel paralyzed right now. So little is within my control. I've been on steroids for two weeks to diminish the swelling. I am bloated, hungry, jittery, angry, clumsy and fearful. I'm having a stretch of insomnia almost every night. Some nights I don't sleep at all.

Should I be doing the things that help me relax? Distract me? Get done the things that need to be done while I am still sharp and strong enough to do them? Do I just live my life as though there is still a long stretch of it ahead?

How do I chase away the morbid thoughts, without burying them so deep that they chew away on my insides? How do I acknowledge the morbid thoughts without letting them take over my life?

There is a lot of uncertainty right now. There's no news, just a lot more questions. I have to balance pushing for answers and knowing when to relax and be patient.

I have never been good at being here, now. I'm working on it. I really am.

Update to the update: I now have a brain MRI scheduled for Thursday, February 11. I will get results on February 17.