Monday, January 08, 2018

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

9 comments:

bibliogrrl said...

Tim - you and the boys and the rest of your family have been in my thoughts lately. Thank you for the update. I'm glad Laurie is receiving excellent care. So much love and light to all of you. <3 - Lauren

hined said...

Thank you SO much for posting these updates, Tim. I know Laurie from being on her wildly successful No Pink for Profit team at the Run for the Cure a few years ago. We share musical tastes (I think the last time I saw both of you was at the Jeremy Fisher house concert off Scott Street on a very cold and snowy night.) I had the same medical oncologist. And we are both avid knitters! So while we aren't close friends, there are connections, and the world is small. I frequently check this website, then worry when there is no update.... So thank you SO much for filling us in.

I am so happy the Bruyère centre is being as wonderful as I have heard it is, and I pass along my thoughts to Laurie, and to you and your sons and the people in your close circle.

Deb Hine

Pip said...

I don't know you, but I have been inspired by this wonderful blog. All the best to you all. x Pip

Sweet Camden Lass said...

Thank you for the updates. I wish you all peace at this time. So glad Laurie is being looked after, and I hope she stays comfortable and surrounded by love.

Janine Guglielmino said...

Thank you for taking time to share these updates. Thinking of you and Laurie and holding you in my heart.

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WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are David
Clara I’m a citizen of USA, My younger sister was sicking of
breast cancer and her name is David Sandra I and my family have taking her
to all kind of hospital in USA still yet no good result. I decided to go to
the internet and search for cancer cure so that was how I find a lady
called peter Lizzy she was testifies to the world about the goodness of a
herbal man who has the root and half to cure all kind of disease and the
herbal man email was there. So I decided to contact the herbal man for my
younger sister help to cure her breast cancer. I contacted him and told him
my problem he told me that I should not worry that my sister cancer will be
cure, he told me that there is a medicine that he is going to give me that
I will cook it and give it to my sister to drink for one week, so I ask how
can I receive the cure that I am in USA, he told me

That I will pay for the delivery service. The courier service can
transport it to me so he told me the amount I will pay, so my dad paid for
the delivery fee. two days later I receive the cure from the courier
service so I used it as the herbal man instructed me to, before the week
complete my sister cancer was healed and it was like a dream to me not
knowing that it was physical I and my family were very happy about the
miracle of Doctor so my dad wanted to pay him 5 million us dollars the
herbal man did not accept the offer from my dad, but I don't know why he
didn't accept the offer, he only say that I should tell the world about him
and his miracle he perform so am now here to tell the world about him if
you or your relative is having any kind of disease that you can't get from
the hospital please contact dr.sakuraspellalter@gmail.com/ drsakuraspellalter.wordpress.com or whatsapp him
+2348110114739 for the cure, he will help you out with the
problem. And if you need more information about the doctor you can mail me
davidclara223@gmail.com