tag:blogger.com,1999:blog-208825882024-03-15T21:09:58.580-04:00not just about cancerOne woman's stories, adventures, observations and rants, lived through and beyond metastatic breast cancer.lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.comBlogger1116125tag:blogger.com,1999:blog-20882588.post-55668009579383507882018-01-16T10:35:00.001-05:002023-11-16T21:33:39.229-05:00<br />
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Laurie Kingston, 1967-2018</h2>
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<span face=""open sans" , sans-serif" style="background-color: white; color: #4c4c4c;">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).</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c;">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 </span><span face=""open sans" , sans-serif" style="color: #4c4c4c;">Laurie remained an avid reader, writer, knitter, coffee and tea drinker, cyclist, and a good friend to many. </span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c;">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</span><span face=""open sans" , sans-serif" style="color: #4c4c4c;"> "Not Done Yet: </span><span face=""open sans" , sans-serif" style="color: #4c4c4c;">Living Through Breast Cancer".</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c; font-size: 14px;"><br /></span><span face=""open sans" , sans-serif" style="color: #4c4c4c;">In the last few days there have been a number of moving remembrances to Laurie published online. Here is a selection:</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c;"><a href="http://theseatedview.blogspot.ca/2018/01/laurie.html">Laurie</a> (The Seated View)</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c;"><a href="https://cbcn.ca/en/blog/our-stories/remembering-laurie-kingston">Remembering Laurie Kingston</a> (Canadian Breast Cancer Network)</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c;"><a href="http://cmkl.ca/2018/01/10/laurie-kingston/">Laurie Kingston</a> (Chris Lawson)</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c;"><a href="https://www.facebook.com/NancysPoint/posts/1670844482937355?pnref=story">Nancy's Point</a> (on Facebook)</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c;"><a href="https://www.facebook.com/TheMaven/posts/10156140116891133?pnref=story">Amanda Jetté Knox</a> (on Facebook)</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c;"><a href="https://www.facebook.com/hennybird/posts/10155718985975465">Henriette Ivanans-McIntyre</a> (on Facebook)</span><br />
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<span face=""open sans" , sans-serif" style="color: #4c4c4c; font-size: large;">A celebration of Laurie's life will be held March 3rd at 11:00 at the Glebe Community Centre </span><span face=""open sans" , sans-serif" style="color: #4c4c4c; font-size: large;">in Ottawa.</span></div><div class="MsoNormal" style="background-color: white; margin-bottom: 0.0001pt;"><span face=""open sans" , sans-serif" style="color: #4c4c4c; font-size: large;"> </span><br />
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<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>Timhttp://www.blogger.com/profile/09006964084741743368noreply@blogger.com5tag:blogger.com,1999:blog-20882588.post-19506794622712232782018-01-09T12:46:00.000-05:002018-01-09T12:46:14.442-05:00<span style="-webkit-text-stroke-width: 0px; background-color: white; color: #222222; display: inline !important; float: none; font-family: arial, sans-serif; font-size: x-small; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">Hello All, I have sad news. </span><br />
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Laurie died yesterday morning. She was comfortable and pain-free until the end. Her end of life care was exceptional. </div>
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I am beyond grateful for all the love and support we have received. It has made going through an impossible ordeal possible.</div>
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As I have been reminded over the last few days, knowing something is coming doesn't make it any easier.</div>
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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.</div>
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With Love,</div>
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Tim</div>
<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com10tag:blogger.com,1999:blog-20882588.post-3513336618659738462018-01-08T08:49:00.001-05:002018-01-08T08:49:23.333-05:00An update from Tim:<br />
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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.<br />
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November 16<br />
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I would like to let you all know how Laurie is doing and what is going on health wise with her.</div>
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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 <span class="text_exposed_show" style="display: inline; font-family: inherit;">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.</span></div>
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What this means is that the intrathecal herceptin (and later methotrexate) treatment she has been receiving since June 2016 is no longer effective.</div>
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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.</div>
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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.</div>
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December 11<br />
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It is time (past time really) for another update.</div>
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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 <span class="text_exposed_show" style="display: inline; font-family: inherit;">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.</span></div>
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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.</div>
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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.</div>
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The only truly consistent thing is that nothing ever happens as we expect it to, almost regardless of what we were expecting.</div>
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Through all of this the chemo has been paused again to give Laurie the best chance to regain her strength and energy.</div>
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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.</div>
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December 21st</div>
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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 significan<span class="text_exposed_show" style="display: inline; font-family: inherit;">t 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.</span></div>
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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.</div>
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Laurie is now at the Palliative Care unit at the Elizabeth Bruyère hospital on Bruyère St. [<a data-ft="{"tn":"-U"}" data-lynx-mode="async" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.bruyere.org%2Fen%2Fpalliative-care&h=ATMHHnfaPYS3CI0oPs2bGCGOlDz8oN9s3HWwPLI9mGvxl_r7HEt9Uzf3pLN0RdWALOpJNj-hSiPv_fbMDJ-aR7pF9-Z1JXLBS5oA4UmWSxNKzIK6uW0R__0vhKl6owd814jAI_fglk8ZYxIDnXemkJsjIrhtFXoSYvUl7igGqw6yDaQiiu2q4SkBemNY6mnuisXNy_aOYc43qv1w0QeTrX5lYR2Uxfu0V78NEwmtbxuTbtxl6nyuulOi5bW_AObmVfPFh_Y31ebu_gKianxsg37YIj5UHah9pg" rel="noopener nofollow" style="color: #365899; font-family: inherit; text-decoration-line: none;" target="_blank">https://www.bruyere.org/en/palliative-care</a>]</div>
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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.</div>
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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.</div>
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With love,</div>
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Tim</div>
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January 3rd</div>
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Hello All, it is time for another update.</div>
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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.</div>
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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 (<a data-ft="{"tn":"-U"}" data-lynx-mode="async" href="https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.virtualhospice.ca%2F&h=ATOkpV9Qi9quvhkIT676o3PHHuGg_zi0jnW4J4MZiaWqHYEymo12CwWNK0l6Q1iCJTUY9-jLuNkN06e0BChjXzagYkXc0gSLXoTZyRNzpFmi6dDUAChdBZTYbXZZ0SM1pxnmGohwtUf-gIo5IFKDhTl0l0EkDH48VcenSL5IRhbVIr239JtzEoWTqtSK4HMHCZNJTpRlcc_I2D-ybMohcdmT6XLhsnvAkXe8XLwalgZiG4qyo7AyepdL8rpCkcONA4obmyNjT9-EgqSyG28ck52P5wP2_A_nAw" rel="noopener nofollow" style="color: #365899; font-family: inherit; text-decoration-line: none;" target="_blank">http://www.virtualhospice.ca</a>). If you are unfamiliar with palliative care there is a useful overview on this site.</div>
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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.</div>
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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.</div>
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Please take care of yourselves and each other.</div>
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With love,</div>
<div style="font-family: inherit; margin-bottom: 6px; margin-top: 6px;">
Tim</div>
</div>
<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com5tag:blogger.com,1999:blog-20882588.post-69110884307869609952017-02-17T20:26:00.000-05:002017-02-17T20:29:00.621-05:00never a dull moment: the blood clot editionOn 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.<br />
<br />
Instead, she said "You have a blood clot on your lung."<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
We were at emerg for a total 7 hours, into the very early morning.<br />
<br />
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."<br />
<br />
This time I was smart enough to have a shower, something to eat and grab a coffee before going.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
But I'm already feeling better. And I know that my recent shortness of breath was caused by the clot, not cancer.<br />
<br />
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.<br />
<br />
I could have been saved several hours.<br />
<br />
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.<br />
<br />
I still don't seem to be able to do that.<br />
<br />
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.<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com7tag:blogger.com,1999:blog-20882588.post-91666781190604915892017-01-31T10:20:00.000-05:002017-01-31T10:21:30.251-05:00stable and unremarkable. my new favourite words.<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-b11ALR878rI/WJCq--1gfAI/AAAAAAAADP4/nSgPRVuu9GY_DLTaiKAgXdbmaLd6lmohQCLcB/s1600/16179553_10154763488350199_5905103466054503221_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="306" src="https://3.bp.blogspot.com/-b11ALR878rI/WJCq--1gfAI/AAAAAAAADP4/nSgPRVuu9GY_DLTaiKAgXdbmaLd6lmohQCLcB/s320/16179553_10154763488350199_5905103466054503221_o.jpg" width="320" /></a></div>
<br /><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com2tag:blogger.com,1999:blog-20882588.post-24491193880370289072016-11-30T17:21:00.003-05:002016-11-30T17:22:49.532-05:00progress and next stepsI 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.<br />
<br />
That's the bad news.<br />
<br />
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.<br />
<br />
We just have to figure out how to make it better at its job.<br />
<br />
There is very little research, when it comes to leptomeningeal disease (or <a href="http://overview/?pa=D6EQvS2bIfDlwUKm1QdlgHKz%2FCUcYllk0Lmh%2FTDBc%2BnbvMJYehdV7HcYCzu3%2FTK6GN3SQQKgDqEmFhl3Ms878IdHiuSJDifRp%2BEZ0GL%2FEKg%3D" target="_blank">leptomeningeal carcinomatosis</a>), 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.<br />
<br />
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.<br />
<br />
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).<br />
<br />
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.<br />
<br />
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.<br />
<br />
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."<br />
<br />
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.<br />
<br />
<br />
<br />
<br /><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com4tag:blogger.com,1999:blog-20882588.post-38955201721748893772016-11-13T20:44:00.000-05:002016-11-13T20:44:55.724-05:00every week. in pictures.<span style="font-family: "arial" , "helvetica" , sans-serif;">I have now had <a href="http://notjustaboutcancer.blogspot.ca/2016/07/onward.html" target="_blank">24 treatments</a> of <a href="https://en.wikipedia.org/wiki/Intrathecal_administration" target="_blank">Intrathecal Herceptin</a>. 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. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">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 <a href="http://notjustaboutcancer.blogspot.ca/2006/11/wild-ride.html" target="_blank">having a reaction</a>. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">My oncologist (only doctors are trained to deal <a href="http://notjustaboutcancer.blogspot.ca/2016/05/beating-blood-brain-barrier.html" target="_blank">with the Ommaya Reservoir</a>), 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).</span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Dr. G shaves the Ommaya to sterilize it.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Iodine is the next
step in sterilization. Rubbing alcohol comes after.</span></div>
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<a href="https://1.bp.blogspot.com/-Z0ZUbE8xvhw/WCj0oYLlv7I/AAAAAAAADMM/rq-LTImy7rkZASXqyqNozNX9Zwp-FZukACLcB/s1600/iodine.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" height="240" src="https://1.bp.blogspot.com/-Z0ZUbE8xvhw/WCj0oYLlv7I/AAAAAAAADMM/rq-LTImy7rkZASXqyqNozNX9Zwp-FZukACLcB/s320/iodine.JPG" width="320" /></span></a></div>
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<br /><span style="font-family: Arial, Helvetica, sans-serif;">We joke around and laugh a lot at the beginning of every appointment. I look forward to that<br />part. The atmosphere turns very business-like during the actual treatment. I appreciate that, too.</span><br />
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<a href="https://1.bp.blogspot.com/-GkpB7ds1U8E/WCj3gKqpwcI/AAAAAAAADMc/dVU6d0mCpV0X9H8pSiexEMf1qsAGgCewgCLcB/s1600/10-nurse%2Band%2Bdoctor%2Bat%2Bwork.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" height="240" src="https://1.bp.blogspot.com/-GkpB7ds1U8E/WCj3gKqpwcI/AAAAAAAADMc/dVU6d0mCpV0X9H8pSiexEMf1qsAGgCewgCLcB/s320/10-nurse%2Band%2Bdoctor%2Bat%2Bwork.JPG" width="320" /></span></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Before treatment, a sterile cover is put on my head, with a convenient hole in it.</span></div>
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<a href="https://2.bp.blogspot.com/-k3WtFGnIVkQ/WCj478VyeaI/AAAAAAAADMk/qbfH_lUn4HwHcO0waIPxV6LDjKlAJ7edwCLcB/s1600/hole%2Bin%2Bcover%2Bwith%2Bdoctor.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" height="240" src="https://2.bp.blogspot.com/-k3WtFGnIVkQ/WCj478VyeaI/AAAAAAAADMk/qbfH_lUn4HwHcO0waIPxV6LDjKlAJ7edwCLcB/s320/hole%2Bin%2Bcover%2Bwith%2Bdoctor.JPG" width="320" /></span></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The needle is injected in the Ommaya. It doesn't hurt. Really (remember, that's iodine. I am not bleeding).</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Before anything can
be inserted, brain fluid must be extracted. This, to me, is the
really freaky part.
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<a href="https://2.bp.blogspot.com/-gC19NsdkFDA/WCkDZM3NgZI/AAAAAAAADM8/wSnx3RRThw0kgcxiEB5LiTvrwcSX7nXoACLcB/s1600/brain%2Bfluid.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" height="240" src="https://2.bp.blogspot.com/-gC19NsdkFDA/WCkDZM3NgZI/AAAAAAAADM8/wSnx3RRThw0kgcxiEB5LiTvrwcSX7nXoACLcB/s320/brain%2Bfluid.JPG" width="320" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Then the Herceptin goes in. As with the extraction of fluid, it's done over several minutes.</span></div>
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<a href="https://3.bp.blogspot.com/-cvnycjgwDgI/WCkGn2VxSqI/AAAAAAAADNI/Bh3_ZiXxs_sCcUomr6-ivfhduV22CcEhACLcB/s1600/fluid%2Bgoes%2Bin.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" height="240" src="https://3.bp.blogspot.com/-cvnycjgwDgI/WCkGn2VxSqI/AAAAAAAADNI/Bh3_ZiXxs_sCcUomr6-ivfhduV22CcEhACLcB/s320/fluid%2Bgoes%2Bin.JPG" width="320" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When it's all over, the needle comes out.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And we are done.</span>
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">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 <a href="http://notjustaboutcancer.blogspot.ca/2007/07/holy-sht.html">the intravenous infusion of Herceptin</a>).</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">This week, I have a spinal MRI and the following week one of my brain. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I hope treatment is working.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">(Photo credits: Karin Jordan)</span></div>
<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com10tag:blogger.com,1999:blog-20882588.post-66270637590829686402016-10-16T21:04:00.000-04:002016-10-16T21:04:27.389-04:00i learned something from this one<span style="font-family: Arial, Helvetica, sans-serif;"><a href="http://everydayfeminism.com/2014/11/breast-cancer-campaigns/?utm_content=buffer1793d&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer" target="_blank">This article</a> 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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Lots of food for thought here and I learned some things about cisgender privilege and breast cancer.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">From "Every day feminism, It's a longish read but very well done.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<h1 class="entry-title" itemprop="headline" style="background-color: white; box-sizing: border-box; clear: left; color: #222222; font-weight: 400; line-height: 1; margin: 10px 0px 16px -2px;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">"<a href="http://everydayfeminism.com/2014/11/breast-cancer-campaigns/?utm_content=buffer1793d&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer" target="_blank">4 Ways Breast Cancer Awareness Campaigns Can Be Sexist and Oppressive</a>"</span></h1>
<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com3tag:blogger.com,1999:blog-20882588.post-54382233794640379142016-10-15T15:21:00.002-04:002016-10-15T15:22:52.785-04:00time is running out<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/a4JpepTOMyk/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/a4JpepTOMyk?feature=player_embedded" width="320"></iframe></div>
<br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">This is one of the very best and most powerful adds I have seen on breast cancer. And that is saying something.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">It's about living with metastatic breast cancer, less than 3 minutes long and very, very worth it.</span><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com10tag:blogger.com,1999:blog-20882588.post-20016543104918519282016-10-14T21:42:00.000-04:002016-10-14T21:42:07.569-04:00update: stable<span style="font-family: Arial, Helvetica, sans-serif;">I have now had 17 intrathecal (injected into my brain) treatments of the Herceptin. I'm getting used to it.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I had an brain MRI on September 15.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">It showed all visible tumours to be stable. There were no new visible tumours. As I said, in an email to family:</span><br />
<blockquote class="tr_bq">
<div style="background-color: white; color: #222222;">
<span style="font-family: Verdana, sans-serif;">"The brain MRI shows things to be <span class="il">stable</span>. This is so much better than the alternative that we celebrated with gelato and a meal out.</span></div>
<div style="background-color: white; color: #222222;">
<span style="font-family: Verdana, sans-serif;"><br /></span></div>
<div style="background-color: white; color: #222222;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">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 <span class="il">stable</span> 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."</span></div>
<div>
</div>
</blockquote>
<span style="font-family: Arial, Helvetica, sans-serif;">The oncologist treating me said that it's likely that I am stable because of <i>some</i> 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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<blockquote class="tr_bq">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="background-color: white; color: #222222;">"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 </span><span class="il" style="background-color: white; color: #222222;">stability</span><span style="background-color: white; color: #222222;"> ball. My back pain has been a serious impediment to my quality of life so I want to make it better."</span></span></blockquote>
<span style="font-family: Arial, Helvetica, sans-serif;">I also have <a href="http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944" target="_blank">neuropathy</a> 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. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com7tag:blogger.com,1999:blog-20882588.post-628761148185024212016-07-17T19:49:00.000-04:002016-07-17T19:54:38.373-04:00grieving and treatment<span style="font-family: "arial" , "helvetica" , sans-serif;">My father passed away <a href="http://www.salonfuneraireberthiaume.com/Funerailles/Fiche/2896/Robert%20Kingston" target="_blank">a couple of weeks ago</a> (the night before I started <a href="http://notjustaboutcancer.blogspot.ca/2016/05/beating-blood-brain-barrier.html" target="_blank">IT Herceptin</a>, 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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">It was the right call but it was hard and it made everything seem less real and further away. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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 <a href="http://notjustaboutcancer.blogspot.ca/2016/05/beating-blood-brain-barrier.html" target="_blank">IT Herceptin</a>). 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). </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I need to walk that line between getting stuff done, having some fun, staying vigilant and getting enough rest.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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 <a href="http://notjustaboutcancer.blogspot.ca/2016/05/beating-blood-brain-barrier.html" target="_blank">IT Herceptin</a>, 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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-ubnFADfSdAw/V4wYJ65xhYI/AAAAAAAADFk/TFOEm2MF5GY3lsB84qkLKcy0buyQb4TNwCLcB/s1600/sacha%2Band%2Btim%2Bat%2Bstephanie.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://1.bp.blogspot.com/-ubnFADfSdAw/V4wYJ65xhYI/AAAAAAAADFk/TFOEm2MF5GY3lsB84qkLKcy0buyQb4TNwCLcB/s320/sacha%2Band%2Btim%2Bat%2Bstephanie.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two of my boys out for our meal after the service.</td></tr>
</tbody></table>
<br /><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com9tag:blogger.com,1999:blog-20882588.post-71631280011868611482016-07-01T16:11:00.000-04:002016-07-01T16:23:45.043-04:00onward<span style="font-family: "arial" , "helvetica" , sans-serif;">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 <a href="http://notjustaboutcancer.blogspot.ca/2016/05/beating-blood-brain-barrier.html" target="_blank">getting Herceptin, injected through my Ommaya Reservoir.</a> 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 <span style="background-color: white;">hoping hard th</span>at it's working.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.,<span style="background-color: white;"> who has treated me for for </span>10 years.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">That fact didn't stop me from freaking out a little.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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."</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I have to trust (and do my own research). <span style="background-color: white;">I'm trying. What other choice do I hav</span>e?</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com10tag:blogger.com,1999:blog-20882588.post-40829472059267370252016-06-02T16:28:00.000-04:002016-06-04T12:20:25.547-04:00limbo and dreams (updated)<span style="font-family: "arial" , "helvetica" , sans-serif;">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).</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I like information. It makes me feel in control.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">So don't ask me when I will be having treatment because I don't know.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">On another note, I had some strange dreams last week.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Deconstruct that. No so hard.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Now let's get some news, so I can follow my dreams.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.<br /><br />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.</span><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com2tag:blogger.com,1999:blog-20882588.post-25576504876322276142016-05-24T10:00:00.000-04:002016-05-24T10:00:00.231-04:00may you live in interesting times<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Not so much.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-zR8S8jSd0mE/V0NcHE4dHEI/AAAAAAAADDE/ejIDh6whMaAq2S_QsXFnH5pMgqauJYxIQCLcB/s1600/eyes.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://4.bp.blogspot.com/-zR8S8jSd0mE/V0NcHE4dHEI/AAAAAAAADDE/ejIDh6whMaAq2S_QsXFnH5pMgqauJYxIQCLcB/s320/eyes.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">They got worse.</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">No one told me this could happen.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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).</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I told him that I'm collecting hopeful stories.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Today is my regular Herceptin treatment. I still don't have a date for IT Herceptin</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">At least I'm sitting in the sunshine as I type this. I just need to chose to be in better mood.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Or not.</span><br />
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<a href="https://4.bp.blogspot.com/-iG0suc0J5oM/V0NSYtZPUkI/AAAAAAAADC0/1QQvswG0-j8akogYvBDG76dOzQfAatqEwCLcB/s1600/i%2Bwill%2Bnot%2Bkeep%2Bcalm.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><img border="0" height="320" src="https://4.bp.blogspot.com/-iG0suc0J5oM/V0NSYtZPUkI/AAAAAAAADC0/1QQvswG0-j8akogYvBDG76dOzQfAatqEwCLcB/s320/i%2Bwill%2Bnot%2Bkeep%2Bcalm.jpg" width="175" /></span></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span><span style="font-family: "arial" , "helvetica" , sans-serif;">p.s.: This totally reads like writing on speed. The steroids make my heart pound and my fingers fly!</span>
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<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com8tag:blogger.com,1999:blog-20882588.post-65281471035267746742016-05-20T12:53:00.000-04:002016-05-20T12:54:12.991-04:00beating the blood brain barrier<span style="font-family: "arial" , "helvetica" , sans-serif;">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. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">About 10 days ago, I had an <a href="https://en.wikipedia.org/wiki/Ommaya_reservoir" target="_blank">Ommaya Reservoir</a>, 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).</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-7hifJus8NyU/Vz8v30NKYdI/AAAAAAAADCE/hluvaUPvCWABZ_yYqU0N3QEEILaG0xyPACLcB/s1600/20160510_173231.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://4.bp.blogspot.com/-7hifJus8NyU/Vz8v30NKYdI/AAAAAAAADCE/hluvaUPvCWABZ_yYqU0N3QEEILaG0xyPACLcB/s320/20160510_173231.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You can see my incision and the staples here. It's in a semi-circle at the front, slightly to the right.</td></tr>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="text-align: center;">The good news is that we have decided to try something that is still pretty experimental: injecting <a href="http://www.herceptin.com/breast/metastatic" target="_blank">Herceptin</a> (also called trastuzumab, to which I have been a <a href="http://www.ncbi.nlm.nih.gov/pubmed/26546106" target="_blank">super responder</a>. I have been on the drug for 9.5 years and since since <a href="http://notjustaboutcancer.blogspot.ca/2007/07/holy-sht.html" target="_blank">going into remission</a>, have no detectable cancer below the neck) <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4570757/" target="_blank">directly into my brain</a>, thus getting past the issue of the <a href="http://www.brainfacts.org/brain-basics/neuroanatomy/articles/2014/blood-brain-barrier" target="_blank">blood-brain barrier</a>. </span><span style="text-align: center;">This is known as Intrathecal (or IT) Herceptin. </span><span style="text-align: center;">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.</span></span><br />
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<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-5fZGkXhSiS8/Vz8wIJ8a3bI/AAAAAAAADCI/gvNIfX8_GLUT_bvkx4KYL8y3qHBZCzdqACLcB/s1600/387px-Ommaya_01.png" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://2.bp.blogspot.com/-5fZGkXhSiS8/Vz8wIJ8a3bI/AAAAAAAADCI/gvNIfX8_GLUT_bvkx4KYL8y3qHBZCzdqACLcB/s320/387px-Ommaya_01.png" width="258" /></a></td></tr>
<tr><td class="tr-caption" style="padding-top: 4px; text-align: center;"><br />
<span style="font-size: 12.8px;">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, </span><br />
<span style="font-size: 12.8px;">https://commons.wikimedia.org/w/index.php?curid=6066950</span><br />
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<br />
<blockquote class="tr_bq" style="text-align: left;">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; font-size: 15.9991px; font-style: italic; line-height: 21.9988px;">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 [</span><a aria-expanded="false" aria-haspopup="true" class=" bibr popnode tag_hotlink tag_tooltip" href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4570757/#CR18" id="__tag_532130609" rid="CR18" role="button" style="background-color: white; color: #642a8f; font-size: 15.9991px; font-style: italic; line-height: 21.9988px;">18</a><span style="background-color: white; font-size: 15.9991px; font-style: italic; line-height: 21.9988px;">]. Given that IV trastuzumab does not cross the blood–brain barrier or blood CSF barrier, IT trastuzumab offers a direct approach to the leptomeninges. (</span><span style="background-color: white; font-size: 15.9991px; line-height: 21.9988px;">from</span><span style="background-color: white; font-size: 15.9991px; font-style: italic; line-height: 21.9988px;">: "</span><span style="background-color: white; font-size: 1.3846em; line-height: 1.5;"><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4570757/" target="_blank">Intrathecal trastuzumab: immunotherapy improves the prognosis of leptomeningeal metastases in HER-2+ breast cancer patient", US National Library of Medicine</a>)</span></span></blockquote>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;">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 href="http://notjustaboutcancer.blogspot.ca/2006/11/celebrity.html" target="_blank"> a very intense reaction</a> 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.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; font-size: small;"><a href="http://www.brainmetsbc.org/en/content/magic-happened-husband-tells-story-his-wife-s-success-treatment-her2-leptomeningeal-and-brai" target="_blank">Anecdotally</a>, 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.</span></div>
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<tr><td><a href="https://3.bp.blogspot.com/-PT_dYWypy24/Vz895znK50I/AAAAAAAADCg/bft3A7jypBg0c2v2NMO4_1hgu024BSUBQCLcB/s1600/bear%2Bhugger.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="179" src="https://3.bp.blogspot.com/-PT_dYWypy24/Vz895znK50I/AAAAAAAADCg/bft3A7jypBg0c2v2NMO4_1hgu024BSUBQCLcB/s320/bear%2Bhugger.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.8px;">The bubble wrap is called a "Bear Hugger" and it's warm and lovely. <br />
The drugs probably helped with that feeling.</td></tr>
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<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com6tag:blogger.com,1999:blog-20882588.post-91188369933092607792016-03-23T15:01:00.000-04:002016-03-23T15:01:34.195-04:00the latest<span style="font-family: Arial, Helvetica, sans-serif;"><i>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></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>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. </i></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>It works for me.</i></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><i>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.</i></span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><i><br /></i></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><i>Most of the time.</i></span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif;">March 20th, 2016</span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif;">Dear family,</span><br />
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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. </div>
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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.</div>
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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.</div>
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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 <a href="http://www.cyberknife.com/" target="_blank">CyberKnife</a> 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.<br /><br />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.</div>
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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)</div>
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This is a pretty good fact sheet about brain metastasis: <a href="http://www.brainmetsbc.org/en/content/frequently-asked-questions-about-brain-metastasis" style="color: #1155cc;" target="_blank">http://www.<wbr></wbr>brainmetsbc.org/en/content/<wbr></wbr>frequently-asked-questions-<wbr></wbr>about-brain-metastasis</a></div>
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This one is addresses symptoms. I have the first 7 only: <a href="http://www.brainmetsbc.org/en/content/symptoms-and-diagnosis-0" style="color: #1155cc;" target="_blank">http://www.brainmetsbc.<wbr></wbr>org/en/content/symptoms-and-<wbr></wbr>diagnosis-0</a></div>
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On leptomeningeal metastasis:</div>
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<a href="http://www.brainmetsbc.org/en/content/leptomeningeal-metastases-1" style="color: #1155cc;" target="_blank">http://www.brainmetsbc.org/en/<wbr></wbr>content/leptomeningeal-<wbr></wbr>metastases-1</a></div>
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<a href="http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/carcinomatous-meningitis" style="color: #1155cc;" target="_blank">http://www.cancerresearchuk.<wbr></wbr>org/about-cancer/cancers-in-<wbr></wbr>general/cancer-questions/<wbr></wbr>carcinomatous-meningitis</a></div>
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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).</div>
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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.</div>
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<br />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. </div>
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Having things to look forward to is making us all much happier these days.</div>
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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.<br /><br />With much love as always,</div>
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Laurie and Tim</div>
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<br /><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com17tag:blogger.com,1999:blog-20882588.post-73758639091046192852016-03-21T09:50:00.002-04:002016-03-21T09:54:28.972-04:00good things<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-eak6tinopMY/Vu_7RNiFukI/AAAAAAAAC-4/YQvTSZq6E3MKoiXEF-qQIjDniuLWptb_A/s1600/daniel%2Bbeekeeping.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-eak6tinopMY/Vu_7RNiFukI/AAAAAAAAC-4/YQvTSZq6E3MKoiXEF-qQIjDniuLWptb_A/s320/daniel%2Bbeekeeping.jpg" width="240" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Time for another one! What would yours be?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In random order, the things that make me happy these days:</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://www.lynnmilesmusic.com/" target="_blank">Lynn Miles</a>.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="http://www.billybragg.co.uk/toothandnail.php" target="_blank">Billy Bragg</a>.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Tea.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Thinking about <a href="http://traveldrumheller.com/" target="_blank">Canadian travel</a>.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Colours.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">Massage and reflexology.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">My friends and chosen family (and that includes lots of real family).</span><br />
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<a href="https://3.bp.blogspot.com/-_JB1GTPbm7E/Vu_9CEwxJcI/AAAAAAAAC_E/LoH7QYE4x4I_t9QY6ByIP7saFrUjKddQw/s1600/laurie%2Band%2Bdaniel.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-_JB1GTPbm7E/Vu_9CEwxJcI/AAAAAAAAC_E/LoH7QYE4x4I_t9QY6ByIP7saFrUjKddQw/s320/laurie%2Band%2Bdaniel.jpg" width="240" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My sister (because that bears repeating).</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Dark humour.</span><br />
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<a href="https://2.bp.blogspot.com/-Mx5qPcbm0JU/Vu_7vrEPRoI/AAAAAAAAC-0/z19IjoQxDMwdXGKCszPjAgaRIhfWHNACA/s1600/IMG_0097.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://2.bp.blogspot.com/-Mx5qPcbm0JU/Vu_7vrEPRoI/AAAAAAAAC-0/z19IjoQxDMwdXGKCszPjAgaRIhfWHNACA/s320/IMG_0097.JPG" width="320" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Dog faces.</span><br />
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<a href="https://1.bp.blogspot.com/-F7_OccYM714/Vu_7SOYTmSI/AAAAAAAAC-4/H5v0VPdwPy4_y62C8O36_mjEkhZjXYn9g/s1600/toby%2Bknitting.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://1.bp.blogspot.com/-F7_OccYM714/Vu_7SOYTmSI/AAAAAAAAC-4/H5v0VPdwPy4_y62C8O36_mjEkhZjXYn9g/s1600/toby%2Bknitting.jpg" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Tim (for 25 years this month. Over half my life).</span><br />
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<a href="https://3.bp.blogspot.com/-lXxP7lPL8ng/Vu_7RpvyK4I/AAAAAAAAC-4/8eUcAucRcEMmIoASVq4AHpY4sGTRDxOsA/s1600/tim.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://3.bp.blogspot.com/-lXxP7lPL8ng/Vu_7RpvyK4I/AAAAAAAAC-4/8eUcAucRcEMmIoASVq4AHpY4sGTRDxOsA/s1600/tim.jpg" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My brain (ironically, I know).</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Spring.</span><br />
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<a href="https://4.bp.blogspot.com/-rlv1khP5FF0/Vu_7R7pl_FI/AAAAAAAAC-4/m-4pzdeiASMwkmsG6SZpZUwCpAgsSzElA/s1600/beekeeper%2527s%2Bquilt.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://4.bp.blogspot.com/-rlv1khP5FF0/Vu_7R7pl_FI/AAAAAAAAC-4/m-4pzdeiASMwkmsG6SZpZUwCpAgsSzElA/s320/beekeeper%2527s%2Bquilt.jpg" width="320" /></a></div>
<br /><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com1tag:blogger.com,1999:blog-20882588.post-24917254845341813612016-03-15T10:31:00.002-04:002016-03-15T10:31:48.724-04:00Cyber Knife is radiation (and other news)<span style="font-family: Arial, Helvetica, sans-serif;">First of all, thanks to you all for giving me all this space. It has meant a lot to me.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Clear as mud? Not even going to proofread but will post. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">See you on the other side.</span><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com1tag:blogger.com,1999:blog-20882588.post-52314930915217056172016-03-07T18:09:00.000-05:002016-03-07T18:09:42.776-05:00at least i know what to expect on the table<span style="font-family: "arial" , "helvetica" , sans-serif;">I have a new tumour.<br /><br />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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Both my oncologists (radiation and medical) are not just good and smart but they really care what happens to me.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">If I don't want to talk about it right now, just follow my lead.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Going to knit tonight and watch the last Downton Abbey tomorrow. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So no spoilers.</span><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com7tag:blogger.com,1999:blog-20882588.post-11832580616150674112016-02-17T16:56:00.000-05:002016-02-17T16:56:26.046-05:00inconclusive<span style="font-family: Arial, Helvetica, sans-serif;">Today's appointment did not work out as I had hoped, in that there weren't a lot of answers.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It didn't work out that way.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">My MRI reports were not ready.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The good news is that the spinal MRI was completely clear.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">See what I mean? More questions. Few answers.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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."</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">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.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">And I'm still on steroids, eating everything that isn't nailed down and otherwise revved up from the pills. </span><br />
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<br /><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com1tag:blogger.com,1999:blog-20882588.post-57955197805305463942016-02-10T12:00:00.000-05:002016-02-10T12:00:14.489-05:00seriously.<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-8HkWXPu4yso/Vrjxp-sQq7I/AAAAAAAAC80/HqXd-eQpTso/s1600/fb%2Bupdate%2Bcomplementary.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="274" src="https://3.bp.blogspot.com/-8HkWXPu4yso/Vrjxp-sQq7I/AAAAAAAAC80/HqXd-eQpTso/s640/fb%2Bupdate%2Bcomplementary.PNG" width="640" /></a></div>
<br /><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com0tag:blogger.com,1999:blog-20882588.post-29367986201949945112016-02-08T14:29:00.001-05:002016-02-09T10:11:00.925-05:00Be. Here. Now. (an update)<span style="font-family: "arial" , "helvetica" , sans-serif;">I just had a bath to help me relax. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">"Be. Here. Now."</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">"Be. Here. Now."</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">There is a lot of uncertainty in my life right now. I still haven't had the MRI that will tell me if the <a href="http://notjustaboutcancer.blogspot.ca/2015/12/patience.html" target="_blank">Cyber Knife radiation I had in December</a> got rid of the tumours. Meanwhile, I am experiencing symptoms that are difficult, exhausting and disconcerting.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My head hurts on the right at the front of my forehead.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I have an earache, that sometimes extends to my jaw and throat.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">The right side of my face tingles from my chin to my forehead, when I stand up.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">There is something wrong with my balance.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I have begun to feel a pressure behind my right eye.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't have all the symptoms at once and they are not debilitating. They are exhausting. And scary.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">I <a href="http://www.hamiltonhealthsciences.ca/documents/Patient%20Education/CyberknifePlanAndTreatBrainJCCPORTRAIT-th.pdf" target="_blank">found out online</a> 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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">"Be. Here. Now."</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">My therapist says that patients who self-advocate have the best outcomes. In that case, I should do well.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"Be. Here. Now."</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When I was at <a href="https://www.stratfordfestival.ca/" target="_blank">Statford Festival, in Ontario last summer</a>, I bought a mug, in support of the <a href="http://afchelps.ca/" target="_blank">Actors' Fund of Canada</a>, with those words emblazoned on it. I use it alot. I like to have them in front of me.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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?</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">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.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have never been good at being here, now. I'm working on it. I really am.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Update to the update: I now have a brain MRI scheduled for Thursday, February 11. I will get results on February 17. </span><br />
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<br /><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com11tag:blogger.com,1999:blog-20882588.post-85575051570188752712015-12-18T11:43:00.000-05:002015-12-18T12:15:52.318-05:00patience<span style="font-family: "arial" , "helvetica" , sans-serif;">I am being taught a lesson in patience. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I finished the last of my radiation on December 7. They told me it would be two to three weeks before I feel like myself again. It's only been 11 days but I feel so frustrated that I still can't do much, especially at a time of year when so much is happening and there is so much to be done.<br /><br />I am definitely on the mend and have felt that way for the last few days. It's nice to have a bit of energy but I have learned that it goes suddenly. I can go out to do an errand and before I am done, I can barely make it back to the car. I need to be more patient with myself.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The ear ache and vertigo are not gone. This means nothing. One of the tumours was (note my optimistic use of the word "was") sitting on the nerve for the Inner Auditory Canal. The tumour could be gone and there could still be nerve damage, which is either temporary or permanent. Only time will tell. I need to wait patiently to see if I will ever be symptom-free, or if I just need to figure out how to cope.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I don't see the radiation oncologist until middle of March. I won't learn until then what the status is of my brain and if the treatment worked. Pictures are meaningless, if there is still swelling from the radiation, so I need to be patient about this too.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I had a bunch of other tests before radiation. My bone scan and CT of my chest came back clear (Hooray!) but my abdominal CT showed a very small spot on my liver. It could be scarring (my liver has a lot of scarring from previous tumours) or it could be a new metastasis. The only way to know for sure is to do another CT in a couple of months, to see if anything has changed. I see the medical oncologist again in mid-February and will have done another CT before then. I need to be patient about this too.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have never been very good at patience. I was the kid who shook the presents under the tree and ripped at the corners. I wanted to know the sex of my kids, as soon as I possibly could (although fate intervened to teach me a lesson). I am the queen of instant gratification.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I'm realizing though that I can't wait until I know more to start doing the things that are good for me. It's time to start taking Vitamin D and eating vegetables again (it really is too damn bad that potato chips are not a vegetable). I also need to cut myself some slack about what I can't do.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">And I need to be patient.</span><br />
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<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com5tag:blogger.com,1999:blog-20882588.post-9401115941469809562015-11-30T09:20:00.000-05:002015-11-30T13:48:29.966-05:00the wisdom of my therapist<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-q19Vh_MMAvw/VlinLqn41tI/AAAAAAAAC50/WiTvEi0iDbs/s1600/worrying%2Bcharlie%2Bbrown.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://2.bp.blogspot.com/-q19Vh_MMAvw/VlinLqn41tI/AAAAAAAAC50/WiTvEi0iDbs/s320/worrying%2Bcharlie%2Bbrown.jpg" width="320" /></a></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I've been seeing a therapist for a couple of years and, at this point, she knows me really well. I honestly don't know how I would have lived through the last couple of years without her and only wish I had started working with her sooner.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I've been thinking of some of the things that I have learned from her.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Patients who advocate for themselves have better outcomes. </b>My therapist used to work in a hospital and this is something she learned then. I find it very comforting, especially as I make call after call to make sure I get the information I need to know how I am being treated and why. I feel so much better when I know what's happening. It's good to know that studies bear out my gut instinct.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>It's almost impossible to have a panic attack if you are breathing. </b>In one of our earliest appointments, she had me stop talking and take the time to breathe deeply. I felt first impatient and then much calmer. I very often forget to breathe when I am stressed, or I breathe very shallowly, and if I remember to breathe slowly and deeply I immediately feel much better.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Pay attention to what your body is telling you.</b> This is especially true if, like me, you tend to live in your head. As with breathing, it's easy to ignore a headache, tense shoulders or anxiety gnawing away at the stomach. I've had to learn that, somewhat counter-intuitively, ignoring these pangs does not make them go away. They need to be noted and even held up to the metaphorical light and examined. As she keeps telling me, the body and the mind are very connected. Not in the sense that you can will yourself better but if you pay attention, your body can be telling you that something is wrong or that you need to slow down and take care of yourself.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Talking about something, even your worst fear, doesn't make it happen. </b>This should be kind of obvious but I think lots of us are guilty of not saying things out loud because we are on some level scared that we will make them happen. Of course this isn't true and talking about a fear openly can make it lose some of it's power.</span><div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com7tag:blogger.com,1999:blog-20882588.post-89894227353193979282015-11-27T13:40:00.001-05:002015-11-27T13:40:22.843-05:00the latest developments in the brain of Laurie K<div class="separator" style="clear: both; text-align: center;">
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I have been planning for ages to return to writing in this space and feeling a bit guilty about it. I've just been really busy with other writing, volunteering, having fun and getting healthy.</div>
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Ironically, what brings me back is a return of the cancer in my brain. The letter below is an edited version of one I sent out via email earlier this week. </div>
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I am happy to have this blog. I just wish I had different news to share at this time.</div>
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Dear friends and family,</div>
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My last MRI revealed two new tumours in my brain. Both are the same area as before - the cerebellum. One is in my inner auditory canal and the other is in the cerebellum tentori (the lining separating the cerebellum from the rest of the brain). In mid-October, I began to have vertigo and an ear ache and sore throat followed later. Once ear infections were ruled out, I wasn't surprised to learn that the tumour that sits on the auditory nerve causes these symptoms.</div>
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Surgery is not on the table at this time. I'll be having Cyber Knife radiation to both spots on <span style="font-size: 12.8px;">December 1, 3, 4 and 7. The additional dates (the last two times, I did Cyber Knife in one shot) are because the tumour in the auditory canal (IAC) is sitting on a nerve and very close to other nerves. The radiation oncologist wants to take his time and cause as few side effects as possible. Given that these can affect movement, feeling, hearing and of course the vertigo, I'm all for taking things slowly and with caution.</span></div>
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Tim and I have had two weeks or so to let the news sink in and we are doing OK. We spent the first few days vacillating between sadness, anger and despair (and watched a lot of Netflix) but have been much better since seeing the doctors, knowing we have a plan and that the doctors are very well informed and communicating with each other.</div>
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My medical oncologist was also telling us about various possibilities for next steps. There are some really interesting things on the horizon, in terms of crossing the blood brain barrier and viral treatment of cancer. As I said to my medical oncologist, "It's a very exciting time to have brain mets!" </div>
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He laughed.</div>
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I am hoping hard that by the end of 2015 the tumours are zapped to nothing and we don't have to go through this again any time soon. Here's to a healthy, bike-riding, surgery free and zap free 2016.</div>
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I hope this is reasonably clear. Please feel free to ask questions and to talk about this - the boys know and it's not a secret.</div>
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With much, much love,</div>
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Laurie</div>
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The dogs in coats have nothing to do with the blog post, except that they provide distraction from a heavy message. Dogs in coats make me happy.</div>
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<div class="blogger-post-footer">If you are reading this post on a site other than Not Just About Cancer (besides Facebook or a feed reader), you are reading stolen content.</div>lauriehttp://www.blogger.com/profile/14533311678025418958noreply@blogger.com8