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)