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


17 comments:

bibliogrrl said...

So much love to you guys. I think about you and your family a lot. Thank you so much for the update.

I wish I had anything to say that would help, but those words don't exist. This all sucks. But I'm glad you are hanging in.

<3 (and have fun at the concert. :D)

deb said...

yes, words are not quite enough. but thank you for sharing your life with us. it's a privilege to be your friend. sending an abundance of love to you, Tim and the boys.

Miss Vicky said...

So many hugs to you

laurie said...

Thank you so much. Your words mean a lot. xox

JuliaR said...

All we can do is accept the hand that life deals us. I think you are more present in the lives of those who love you (mainly your kids and husband) than most people are, and they are and will benefit from all the energy you are giving them, now and in the years to come. I commend you for all the work you are doing. You are - commendable! <3

refashionista said...

So, so much love, Laurie.

Anonymous said...

Many hugs and much love to you all. You are handling this with a grace that is admirable. Know that people far and wide are sending you support.
~Virginia

Chris Corrigan said...

Much love to you Laurie from Caitlin and Chris. You are in our thoughts. I’m astonished by the grace of your sharing as I have been for years reading this blog. Cyber Hugs!

Anonymous said...

I am just someone who occasionally reads your blog. I am very sorry to read your news. Please look at her2support.org. There are women on the board with Her2 positive metastatic breast cancer with leptomeningeal mets who are doing well with intrathecal Herceptin infusions. There are threads on this in the main part of the message board. One woman is at least 2 years out with this diagnosis.

Chris said...

If I had half your courage, half your clarity, I would count myself lucky. I am, as always, in awe of you. I wish you strength and would like to convey my support in the strongest possible terms.

laurie said...

Thanks so much to each of you for you support and advice. I know about intrathecal treatments but was not aware that any could be available to me. Checking it out. Haven't found the treatments you mention yet but have found other clearly worded, accessible info that would have been helpful to have a while ago! There fact sheets just talk about how the blood brain barrier is so hard to cross!

Anonymous said...

This link should be helpful. It will lead you to a thread about intrathecal Herceptin. At least one of the posters is very knowledgeable and might be able to facilitate your getting it. Although I am not sure whether this is possible in Canada. Please let me know if the link doesn't work and I will try again. Good luck!

http://her2support.org/vbulletin/showthread.php?t=54229&highlight=intrathecal

Jill

laurie said...

Thank you!!

Pip said...

I've been reading your blog for a while now. I don't think i've ever commented before but I admire you so much. Wishing you all the best.

Monina Wagner said...

Sending much love to you. I knew from the moment I met you and your fierce glasses at BlogHer that you are a feisty one. And that is where your light comes from and my hope for you stems. Know I'm thinking of you.

Lene Andersen said...

Oh, crap.

Love you.

Anonymous said...

You are an inspiration to everyone. Lots of love from N.B.