Laurie Kingston, 1967-2018

Laurie passed away peacefully at Élisabeth Bruyère Hospital in Ottawa, Ontario on Monday January 8th, 2018 at the age of 50 years. Loving partner of Tim Wayne. Beloved mother of Sacha Kingston-Wayne and Daniel Kingston-Wayne. Daughter of Diane Kingston and the late Bob Kingston of Hawkesbury, Ontario. Daughter-in-law of Susan Wayne, Jack Wayne and Susan Silva of Toronto, Ontario. Will be dearly missed by her sister Linda Kingston and her partner Ian (Ottawa); brother-in-law Andrew Wayne, his partner Brenda MacDonald, nieces Claire, Esme and nephew Noah (Guelph); brother-in-law Ian Wayne, his partner Dawn Lyons, nieces Zoe and Emma (Ottawa), sister-in-law Sarah Silva-Wayne (Toronto).

Laurie was born August 4, 1967 in Dalhousie, New Brunswick and raised in Hawkesbury, Ontario. She attended Pearson College and Trent University and worked at a number of advocacy organizations. She worked at the Public Service Alliance of Canada since 2002. She was diagnosed with breast cancer in 2005 and liver metastasis in 2006. Throughout ongoing cancer treatments Laurie remained an avid reader, writer, knitter, coffee and tea drinker, cyclist, and a good friend to many. 

Laurie wrote regularly on her blog at Not Just About Cancer and maintained an active presence on Facebook and Twitter. She published a memoir of her cancer experiences titled "Not Done Yet: Living Through Breast Cancer".


In the last few days there have been a number of moving remembrances to Laurie published online. Here is a selection:

Laurie (The Seated View)

Remembering Laurie Kingston (Canadian Breast Cancer Network)

Laurie Kingston (Chris Lawson)

Nancy's Point (on Facebook)

Amanda Jetté Knox (on Facebook)

Henriette Ivanans-McIntyre (on Facebook)


A celebration of Laurie's life will be held March 3rd at 11:00 at the Glebe Community Centre in Ottawa.

 

Hello All, I have sad news. 

Laurie died yesterday morning. She was comfortable and pain-free until the end. Her end of life care was exceptional. 

I am beyond grateful for all the love and support we have received. It has made going through an impossible ordeal possible.

As I have been reminded over the last few days, knowing something is coming doesn't make it any easier.

In the next while we will be thinking about the best ways to remember Laurie. I would welcome your thoughts and input in the future.

With Love,

Tim

An update from Tim:

Here are the last few Facebook posts I made on Laurie's behalf over the last few months. Apologies for everyone who is not on Facebook or connected with me by email.


November 16

I would like to let you all know how Laurie is doing and what is going on health wise with her.

Over the last few weeks Laurie has been suffering from some cognitive issues that has limited her ability to post and comment here, As these issues got more serious her oncologist scheduled an MRI to try and find out the cause and to make a plan to deal with it. The MRI showed that there are new tumours in her brain. I have not read the formal radiology report but it appears that the new tumours are in the brain proper (where her original tumours were), and likely in the lining of the brain as well.

What this means is that the intrathecal herceptin (and later methotrexate) treatment she has been receiving since June 2016 is no longer effective.

The new treatment plan is to undergo whole brain radiation and to begin a course of chemotherapy with two new drugs. The whole brain radiation has started with four of the ten doses done. Laurie began taking lapatinib (Tykerb) and capecitabine (Xeloda) Tuesday. The lapatinib is a small enough molecule that it crosses the blood-brain barrier. These drugs are supposed to work well with the radiation therapy. The chemo is taken orally at home daily which limits hospital visits for which we are thankful. There will likely be side effects to both the radiation and the chemo drugs, but she is managing pretty well so far. The side effects will likely mean that it will be difficult to evaluate the efficacy of the treatment for another month at least.

My understanding is that goal of the treatment is to kill the tumours with radiation and to slow the progression of any remaining disease. Hopefully this will lead to some recovery of Laurie's cognitive abilities. If so she will be back to writing these kind of updates as she really has a gift for it and I would rather she did it.

December 11

It is time (past time really) for another update.

Laurie finished her final dose of whole brain radiation on November 23rd. During the radiation treatment Laurie's oncologist paused the oral chemo treatment to try and limit the side effects of the radiation. She restarted the chemo treatments on November 27th. After the final dose of radiation we met with the radiation oncologist and the excellent radiation oncology nurses. We were warned that the side effects from the radiation will get worse for the next week and can go on much longer. During the weeks after treatment ended the symptoms did get worse as predicted.

Since finishing the radiation Laurie has had worsening fatigue and weakness. Last week it became clear that she was too tired and weak to manage at home. After meeting with her medical oncologist last Wednesday she was admitted to the hospital. She is now on the oncology ward at the General Campus. While the hospital lacks the comforts of home I know she is safe and well cared for there.

After experiencing extreme fatigue and cognitive problems Wednesday and Thursday she bounced back a bit Friday and seemed maybe a bit better again over the weekend. Today she got evaluated by a physical therapist and we met with the ward oncologist. They are also planning on sending her for another MRI, hopefully in a few days. Until we get a better sense of what is going on in her brain it is difficult to make plans. It will likely be at least a few more days until we have enough information to figure out next steps.

The only truly consistent thing is that nothing ever happens as we expect it to, almost regardless of what we were expecting.

Through all of this the chemo has been paused again to give Laurie the best chance to regain her strength and energy.

This has been a challenging time. We would be lost without our friends and family. Please continue to take care of yourself and each other.

December 21st

Laurie had her last dose of whole brain radiation on November 23rd. As I mentioned in the last update she was suffering from side effects that made it difficult to stay at home. She was admitted to the oncology ward of the General Campus on December 6th. During her time there she remained extremely fatigued. After a week she was sent for an MRI to try and see what was causing the fatigue and ongoing cognitive losses. The MRI showed no significant new growths but also no improvement. As well, we learned that Laurie should be doing better post-radiation than she was. Her long-time oncologist let us know that it did not look like she would be getting better. We discussed restarting the chemo, but I learned that it was unlikely to help, and the side effects could still be difficult.

Since she is not in active treatment (no more chemo and there cannot be additional radiation post-whole brain) we were able to move her out of the acute care oncology ward which was noisy, difficult to visit and not set-up for longer term stays.

Laurie is now at the Palliative Care unit at the Elizabeth Bruyère hospital on Bruyère St. [https://www.bruyere.org/en/palliative-care]

Since moving to Elizabeth Bruyère, Laurie been able to rest and has regained some energy. She is comfortable and is being treated very well. It is an easier and more pleasant place to visit with good facilities for patients and their friends and family. I have had very good communications with the doctors, nurses and social worker. After spending time with her at the General Campus it is a relief for me to see her there.

The need to post another one of these updates speaks for itself. I'd of course rather not have to do so. While the situation is difficult, Laurie is comfortable and being well cared for. Days start to get longer tomorrow. We remain surrounded by love and caring people both near and far.

With love,

Tim

January 3rd

Hello All, it is time for another update.

Laurie remains at Elizabeth Bruyère Palliative Care Unit. She is being exceptionally well cared for there. The doctors, nurses and support staff are really good at their jobs which includes making sure Laurie's friends and family are supported as well. The unit is quiet and as institutional places go, not a bad place to spend some time.

Like all of Laurie's health care, this phase has presented itself with new things to learn and process. Elizabeth Bruyère has resources available to help friends and families which I have found really useful. I have also discovered some online resources that have helped including the Canadian Virtual Hospice (http://www.virtualhospice.ca). If you are unfamiliar with palliative care there is a useful overview on this site.

Laurie is still comfortable and and mostly pain-free. Her current treatment is focused on keeping her that way with as few interventions as possible. She is slowing down. Meals are taking longer. She is spending more time sleeping. It all seems like a natural response to what is going on.

It is sad and heart-breaking, but also really lovely to see her being so well cared for. Witnessing the support of friends and family near and far has been awesome and wonderful.

Please take care of yourselves and each other.

With love,

Tim

never a dull moment: the blood clot edition

On Monday, I got a call from the nurse who works with my oncologist. I had a CT scan last week, so the phone call made me I brace myself for the worst kind of news.

Instead, she said "You have a blood clot on your lung."

What unfolded next is a bit blurry but I know that I asked if there was cancer on the CT (no), whether this was life-threatening ("absolutely not") and what I should do next.

I was instructed to get myself to a specific ER (at the General Campus of the Ottawa Hospital, which also houses the Cancer Centre). They would be told to expect me. Tim and I gathered up our stuff, made sure Daniel would be OK and headed out the door. We were at the hospital in 20 minutes.

We then proceeded to wait for more than 6 hours to be seen by a doctor. I established that there was a note on my file, saying that I was coming in but that didn't seem to make a difference in my waiting time. When I finally saw a nurse, she told me that they didn't have a bed for me (I didn't think I was waiting for one) but that she would do a blood draw and they would give me a "loading dose" of the blood thinner that would attack the clot.

She also gave me Benadryl because I had an allergic reaction to the bracelet they'd put on me to alert everyone to my allergy to sulfa drugs.

I probably spent 5 minutes with a doctor. I was given a shot, sent home and told to expect a call from the Thrombosis Clinic in the morning.

We were at emerg for a total 7 hours, into the very early morning.

At 7:30am, I got the expected call from the thrombosis clinic. I was on the list for the morning but should come in "as quickly as possible" because they were "very busy."

This time I was smart enough to have a shower, something to eat and grab a coffee before going.

They were great at the Thrombosis Clinic. Everyone I dealt with was kind, patient, competent and had great communication skills. I learned that blood clots are very common in cancer patients ("It's our largest group of customers") and that my odds of anything bad coming from it went way down when I got the first dose of blood thinner.

I have been prescribed an injectable blood thinner (fewer side effects), that I am to administer daily for at least the next several months. I need to be careful about bruising and cutting myself because my blood will, of course, not clot very easily.

I'm already covered in bruises and have very thin skin (literally, not figuratively) from the Decadron. My stomach is several shades of purple and green at the injection sites (the one from the loading dose is huge and spectacular). I scraped myself on something on Tuesday evening  (I'm really not sure what) and I had to put pressure for a long time for the bleeding to stop.

But I'm already feeling better. And I know that my recent shortness of breath was caused by the clot, not cancer.

I learned that my oncologist spoke to the ER doctor on Monday night and had agreed that I would be streamlined through the process, given my shot and sent home quickly. Somehow that message didn't trickle down to the front lines. My oncologist was shocked and outraged.

I could  have been saved several hours.

Also noted: I was out of the Thrombosis Clinic in two hours; it was clean and had natural light and no one in the waiting room was hacking, bleeding or puking. They set me up to expect a long day but, relatively speaking, it really wasn't. There's a lesson in there about setting low expectations.

I still don't seem to be able to do that.

And even as I was going through this, I was very aware of the fact (and appreciative of it) that I was not going to be handed a bill at the end of the process.

stable and unremarkable. my new favourite words.

progress and next steps

I had an MRI a couple of weeks ago and got the results last week. There has been slight progression in all three tumours in the brain.

That's the bad news.

The good news is that there are no new tumours and that my spine and cerebrospinal fluid remain clear, with no detectable cancer. This means that the Herceptin must be doing something for things to be progressing relatively slowly.

We just have to figure out how to make it better at its job.

There is very little research, when it comes to leptomeningeal disease (or leptomeningeal carcinomatosis), so in lots of ways we are making things up as we go along. The first thing we are going to do is increase the dose of Herceptin and to try and slow the drug down as it enters my brain.

At tomorrow's treatment, we are going to increase the dosage from 60mg to 80mg. The Ommaya Reservoir only holds 60mg and at the end of treatment, the oncologist usually empties it by pumping (really just pressing down on it a few times). Tomorrow, once it is empty, he will add another 20mg and let it drip down over time into the brain.

The next step (we have not determined when) will be to add methotrexate. Herceptin has been shown to be more effective when used in concert with a chemotherapy drug and methotrexate has been shown to be safe for intrathecal treatment (directly into the brain, either through the Ommaya Reservoir or a lumbar puncture).

You may have noted my use of the word "we". More than at any stage of treatment, this process has been incredibly consultative. My oncologist (and the one who replaced him when he was away) has discussed every option with us (Tim and me) and encouraged us to do our own research and bring it in. Since there is just not that much out there, we are trying to find what we can.

We've also discussed safety, liability (for everyone) and quality of life. At this point, I am not willing to go in more than once a week (or to feel sick all the time) nor am I willing to do things that are only in the initial phases of safety or as Dr. G put it "could fry your brain." These desires dovetail nicely with the hospital's and and my doctors', so we are not in a battle about resources.

Hopefully, more things will be available, once we have tried these next steps. When I am sad about how much life has changed for me, I remember that these last few months have been a sort of gift. As my oncologist says, I am "not supposed to be here."

I'm mostly comfortable sitting in this place. I live in this body, so I am not surprised by this news. I want to stick around as long as I can but I also want this time to be happy. It's a delicate balance.

every week. in pictures.

I have now had 24 treatments of Intrathecal Herceptin. A few weeks ago, my friend Karin came and took photos. They were for me (because I can't see my own head) and they helped me a lot to understand the process. It's occurred to me that some of you might like to see them too. 



Every week, I am placed in a private room. It's been the same room every time and I have come to think of it as mine. I get the usual "pre-meds" of intravenous Gravol (dramamine) and Demerol (meperidine) that I have had for years with Herceptin to keep from having a reaction. 

My oncologist (only doctors are trained to deal with the Ommaya Reservoir), comes in after the meds have kicked in. This is what it looks like before treatment (after my hair is combed out of the way).

Dr. G shaves the Ommaya to sterilize it.

Iodine is the next step in sterilization. Rubbing alcohol comes after.

  

We joke around and laugh a lot at the beginning of every appointment. I look forward to that
part. The atmosphere turns very business-like during the actual treatment. I appreciate that, too.

Before treatment, a sterile cover is put on my head, with a convenient hole in it.

The needle is injected in the Ommaya. It doesn't hurt. Really (remember, that's iodine. I am not bleeding).

Before anything can be inserted, brain fluid must be extracted. This, to me, is the really freaky part.

I will be getting 60 mg of Herceptin, which is about 30 ml (about 1 fluid ounce), so that amount of cerebrospinal fluid is what is taken out of my brain. It will be sent for testing, to see if there are detectable cancer cells. It’s a good sign that the fluid is clear and so far the tests have been negative.

Then the Herceptin goes in. As with the extraction of fluid, it's done over several minutes.

I am the first and only person to have this done in Ottawa, so sometimes I am asked if it's OK to have staff in to observe. I always agree to this.

When it's all over, the needle comes out.

And we are done.

The oncologist leaves and there is a 30 minute observation period. The nurses “take my vitals” after 15 minutes and at the end of the half hour. Then I can go home (except every 4th week, when I stay an additional 90 minutes for the intravenous infusion of Herceptin).

This week, I have a spinal MRI and the following week one of my brain. 

I hope treatment is working.

(Photo credits: Karin Jordan)

i learned something from this one

This article explains why some of us get so annoyed when cancer "awareness" campaigns focus on saving the "girls" or the "tatas" or - well you know what I mean.

Lots of food for thought here and I learned some things about cisgender privilege and breast cancer.

From "Every day feminism, It's a longish read but very well done.

"4 Ways Breast Cancer Awareness Campaigns Can Be Sexist and Oppressive"

time is running out

This is one of the very best and most powerful adds I have seen on breast cancer. And that is saying something.

It's about living with metastatic breast cancer, less than 3 minutes long and very, very worth it.

update: stable

I have now had 17 intrathecal (injected into my brain) treatments of the Herceptin. I'm getting used to it.

I had an brain MRI on September 15.

It showed all visible tumours to be stable. There were no new visible tumours. As I said, in an email to family:

"The brain MRI shows things to be stable. This is so much better than the alternative that we celebrated with gelato and a meal out.

It would have been nice to see some progress but this is still good. What's difficult to know is if I am just staying stable right now on my own or if the treatment is working. What is certain is that we will not be stopping for a little while - even if it is a grind, we have to assume that it's helping. Things are certainly not nearly as bad after 14 treatments as they could be by now."

The oncologist treating me said that it's likely that I am stable because of some treatment but we don't know if that's the Herceptin or the CyberKnife radiation I had in March. I do wish it were more obvious but I am happy to be here and to be feeling OK, all things considered.

I also had a spinal MRI on September 16. The report clearly stated that there was no visible sign of metastasis in my spine. This is good news. I'm still in a lot of pain but I don't need to worry that its caused by a new tumour.

"I have degenerative disc disease (which is a misnomer because it is not a disease and not bound to get worse). I will not hurt it by walking through pain or swimming. I'm going to see a physiotherapist and I have acquired a stability ball. My back pain has been a serious impediment to my quality of life so I want to make it better."

I also have neuropathy in my right foot and a lot of discomfort from headaches and all the weight I have gained. I miss my old body and the things it could do. I haven't given up hope that I will get some of that back but it's frustrating. 

On the other hand, I feel lighter these days. I spent much of the summer feeling like I was about to die and just waiting for the other shoe to drop. Nothing has changed really except that I seem to have decided to enjoy living. It's so much easier to exist this way.

At one of my treatments this summer, Tim said to me "I feel an obligation to have more fun." It's an odd way to put things but I really got it. We have, since that day, put in a concerted effort to have a better time. And I think we've been doing a pretty good job.

grieving and treatment

My father passed away a couple of weeks ago (the night before I started IT Herceptin, in fact). His service was last week. It was small and private. I was very impressed with the priest who had never met my father but listened to my mom and my sister and said some very thoughtful things.

The end of my father's life was not an easy one and, in his last days, I was unable to get to the hospital. I didn't (we didn't) want to put my treatment in jeopardy by exposing myself to hospital germs. 

It was the right call but it was hard and it made everything seem less real and further away. 

I have realized that grieving, or working through, a death is perhaps not so compatible with intense cancer treatment. I need to stay focused, informed, strong and clear as we go forward.

I need to keep putting one foot in front of the other and get to treatment every single week. I need to build a relationship with a new oncologist (who I had never met before starting the IT Herceptin). I need to figure out what I wish to do when it comes to increasing doses and deciding how to proceed (my new oncologist is very thoughtful but also consultative. He acknowledges that we are smart and well informed - and that there is a paucity of information out there). 

I need to walk that line between getting stuff done, having some fun, staying vigilant and getting enough rest.

It turns out that my regular oncologist, who has followed me since 2006, is unlikely to return for several months (I do not know the details as to why and don't feel that I am entitled to them. Something very hard must have happened and I hope that he is getting what he needs). What I didn't realize is that the other doctor, who convinced my oncologist to go the route of IT Herceptin, is finished at our hospital and is now in Boston. At least he is reachable via email by my medical staff but he's not here to question and to reassure.

All that to say that I want to grieve. I want to hold up my emotions to the light and and think about what this recent loss means. I don't cry easily and it has yet to really happen.

The service helped. And I have been thinking of the things that were important to my father that he passed on to me: intellect, honesty, respect for privacy, a love of literature and a curiosity about the world and it's differences. 

And despite all that he went through at the end, I know that he would want me to keep putting one foot in front of the other.

Two of my boys out for our meal after the service.

onward

There was a bit of a rocky start but I seem to be moving forward with treatment. Every Wednesday, for the rest of the summer, I will be getting Herceptin, injected through my Ommaya Reservoir. I'm not the first in Ottawa to have an Ommaya but I am the first to have Herceptin injected in this fashion. I'm hoping hard that it's working.

There was some confusion on my first week. First I was told that treatment would be delayed by a day and administered by an oncologist other than Dr. G., who has treated me for for 10 years.

Then, on the day of treatment, I found out that Dr. N., his replacement, had thought I had been through this a few times and was taken aback that it was my first treatment. I also learned that it will be weeks before my own oncologist returns.

I want to be clear about the fact that there is no way that Dr. G. would disappear like this, unless it was a personal emergency. I am missing him like crazy and upset that he's gone but I believe that he had no choice and I am want things to be better for him soon.

That fact didn't stop me from freaking out a little.

Dr. N. was incredibly adept with the Ommaya and I really liked his manner. He was thoughtful, gentle and clear. He was unsure how we were going to proceed, given his own schedule and that of other staff. However, when I said "It's disconcerting, when you've been told that you might only have months to live, to learn that there is no plan for treatment for the next several weeks."

He left, got it sorted and came back with a schedule: I'm to be at the hospital every Wednesday morning until my MRI in August.

By my second appointment, things had become even clearer. Dr. N. had spoken to a third doctor who works with Dr. G., and who has worked on trials of this treatment and really supports it. He was getting married on the Saturday after my first treatment and was probably on his honeymoon during my second). Dr. N. knew the plan and had been reviewing the literature and was ready to share that with me.We will do the same dose for three weeks and then double it for 3 more weeks. 

After that? I don't know but knowing this much is very reassuring. Next week, yet another oncologist will administer the treatment. Like Dr. N, he is not a breast doctor but hopefully he knows his way around an Ommaya. 

I didn't react to the Herceptin either time. This is good but perhaps also bad, since I reacted before the Herceptin worked on the rest of my body.

I have to trust (and do my own research). I'm trying. What other choice do I have?

It's been a rough couple of weeks, for reasons unrelated to cancer. My father passed away the night before my first treatment. It was not entirely unexpected but it was still painful for everyone and something that I think we are all still processing.

Today is Canada Day in Ottawa. I'm not crazy about crowds and it is currently pouring. I am sitting on my couch as I type this. I think it's exactly where I need to be.

limbo and dreams (updated)

I am still in limbo. My head is healed and I feel more like myself, except for some odd symptoms (my jaw is still freezing shut intermittently for a minute or so. It's so annoying. And embarrassing. It's not really something I can hide and it happens at the most awkward times).

I had my surgery on May 9. Everything said to me leading up to that implied that moving ahead was urgent. And yet here we are. I have a lot of faith in my medical team but this time information is not forthcoming and it's making me crazy. I can't plan a thing and I would just like some kind of information. I know I haven't fallen through the cracks. I would just like someone to explain to me where things are at.

I like information. It makes me feel in control.

So don't ask me when I will be having treatment because I don't know.

On another note, I had some strange dreams last week.

I dreamed that the area in which I lived was being flooded and I had to rush back and get a few things before all was washed away. When I arrived at home, though, the rain stopped, the sun came out and there was a brilliant blue sky. I didn't have to leave after all.

In another dream, a small furry mammal was hit somehow and fell to the ground, dead. In my dream it was a "possum" but it looked more like a groundhog. The body lay in the same spot throughout the dream and I would check on it periodically to see if it was still there. The last time I looked before waking, the animal jumped to its feet and bolted up a tree. After several days of lying still, it wasn't dead at all.

Deconstruct that. No so hard.

Now let's get some news, so I can follow my dreams.

Update: I finally have dates. I don't start for a couple of weeks. I asked why and was told that my oncologist said that it's "not urgent". I asked if this was because of the decent MRI and the nurse said she thought so. After the first date in June, I will go in weekly for a few weeks and then I guess we will re-visit the schedule.

I feel mostly relieved because I can plan my life a little. I just wish I didn't have these annoying symptoms that remind me what's happening.

may you live in interesting times

It's been two weeks since my surgery and for some reason, I thought this would be the easy part. I don't really know why I thought that, except that both my surgeon a and my medical oncologist seemed to the think that putting the Ommaya in could have been like day surgery and I would be feeling like myself again in a week or so.

Not so much.

The nurses were much more cautious and they said to take it easy, be consistent in my activity and increase it very slowly. Ultimately, this is what makes sense. I just wish I weren't so damned impatient.

My surgery was on May 9th. I was in the recovery room for much longer than planned because there was no bed for me in the neurology ward. I ended up being moved in the middle of the night and sent home by noon the next day. And I was just kept in as long as that, so that I could get my three doses of IV antibiotics.

I had a good first couple of days at home (and it was such a relief to be there) but later in the week, after a fast taper on the Decadron (the steroid with which I have a hate-hate-like relationship), I started to notice that my eyes were getting swollen, as though the lids were filling with water. By Saturday afternoon, they were swollen to slits.

They got worse.

No one told me this could happen.

The next day, Sunday, my eyes were starting to improve but my head was hurting. In the beginning, all the pain had been around my incision. By the following weekend, the top and back of my head hurt and it felt just like my brain was swelling. Or a new tumour was cutting off the flow of liquid. It hurt and was very, very scary.

I debated going to Emergency (I hate the ER but the stuff I was reading online pretty much said it could either be a nuisance or kill me) but in the end, decided to take it very easy and call my surgeon the next morning (Monday).

My doctor's secretary made me an appointment and had me come in. My surgeon ended being called away to an emergency and we spent 5 hours at the hospital. It was worth the wait. A CT scan showed that there was no bleed and no obvious new tumour. My doctor put me back on the steroids (a drag but good for the swelling), shared a pretty decent MRI with me and a very hopeful story of a patient with leptomeningeal disease who he knows and has treated, who is still alive and active, two years after her diagnosis.

I told him that I'm collecting hopeful stories.

I went home in a much better mood but woke up in the night with a killer urinary tract infection, my second in a month and almost definitely contracted at the hospital. I have finished my course of antibiotics to treat that and am trying to consume as much probiotic as I can, to avoid a resistance to antibiotics. 

It's totally a case of two steps forward, one step back. On Saturday I felt pretty good and .possibly overdid it. Today, my head hurts again and I am tired from the steroid induced insomnia. I'm also feeling irritable and impatient. I am not supposed to bend down or lift anything. And I hate having to ask for each thing that I need to be done for me.

Today is my regular Herceptin treatment. I still don't have a date for IT Herceptin

At least I'm sitting in the sunshine as I type this. I just need to chose to be in better mood.

Or not.

p.s.: This totally reads like writing on speed. The steroids make my heart pound and my fingers fly!

beating the blood brain barrier

Ouch! My writing muscle hurts! I realized this week that I have not blogged since March 23. I have so much I want to say that I don't know where to start, so it feels a little overwhelming. 

About 10 days ago, I had an Ommaya Reservoir, installed in my brain. Compared to my other brain surgeries it was a walk in the park but I'm still dealing with all kinds of fallout from the anesthetic, pain and healing. I had my staples out yesterday, though, so the end of the tunnel must be in sight (although my head hurts as I type this).

You can see my incision and the staples here. It's in a semi-circle at the front, slightly to the right.

The good news is that we have decided to try something that is still pretty experimental: injecting Herceptin (also called trastuzumab, to which I have been a super responder. I have been on the drug for 9.5 years and since since going into remission, have no detectable cancer below the neck) directly into my brain, thus getting past the issue of the blood-brain barrier. This is known as Intrathecal (or IT) Herceptin. There is currently a trial happening in Montreal (and a resident who works on it was just in Ottawa, working with my oncologist) and there are stories of people going through the process in the Western US. I will be the first in Ottawa. I'm told that everyone in the hospital is very excited.

By artwork by Patrick J. Lynch, Kuebi = Armin Kübelbeck - own work, the brain is taken from Image:Skull_and_brain_sagittal.svg made by Patrick L. Lynch. Made with InkScape., Public Domain,
https://commons.wikimedia.org/w/index.php?curid=6066950

IT trastuzumab was effective in targeting extramedullary (LM) metastases. This resulted in the prolonged survival of our patient for 46 months, compared to a median life expectancy of 3–4 months for breast cancer patients following the diagnosis of LM without treatment [18]. Given that IV trastuzumab does not cross the blood–brain barrier or blood CSF barrier, IT trastuzumab offers a direct approach to the leptomeninges. (from: "Intrathecal trastuzumab: immunotherapy improves the prognosis of leptomeningeal metastases in HER-2+ breast cancer patient", US National Library of Medicine)

The decision to go this route is the first time I have felt hopeful in a while. My oncologist is nervous about side effects and finding the right dose. I had a very intense reaction to Herceptin when I started and because this kind of treament is still experimental there are potentially some very serious side effects (even death). There is also little clarity as to what dose would be both safe and effective.

Anecdotally, and in trials in Montreal (and elsewhere) the response has been very positive, over all. I'm glad my oncologist has been convinced to give it a go. Additionally, my latest MRI has revealed that the three tumours in the brain lining are all stable, so we are feeling less urgency. This is also good news, although I am keen to get started.

The bubble wrap is called a "Bear Hugger" and it's warm and lovely.
The drugs probably helped with that feeling.

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:

http://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/carcinomatous-meningitis

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