tag:blogger.com,1999:blog-61386409113231058522024-03-14T04:44:45.891-04:00Kate Has CancerA peek at life with Stage IV, metatastic, breast cancer.Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.comBlogger101125tag:blogger.com,1999:blog-6138640911323105852.post-89358446756010652662018-03-23T16:23:00.000-04:002018-03-23T16:23:55.608-04:00A Tribute to Laurie Kingston, Advocate<div class="MsoNormal" style="line-height: 150%; text-align: left;">
<span style="font-family: inherit; text-indent: 0.5in;">On March 3 of this year, a Celebration of Life was held for my recently-deceased friend, <a href="http://notjustaboutcancer.blogspot.ca/2018/01/laurie-kingston-1967-2018-laurie-passed.html" target="_blank">Laurie Kingston</a>. Several people spoke at the ceremony about how they knew Laurie and I was one of them. It quickly became clear that who Laurie was to us was what she had always been: a kind person who welcomed new friendships and advocated for those she represented. I'd like to share my remarks here as a record of not simply what I said, but to record the role Laurie played as an advocate for people with metastatic breast cancer. The rest of us need to step up now and fill the gap her passing has left.</span></div>
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<span style="font-family: inherit; text-indent: 0.5in;">Here's what I said:</span></div>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="font-family: inherit; text-indent: 0.5in;">Tim asked me if I would say a few
words about Laurie’s role as an advocate and a support for others with cancer.
I am happy to share what I know and what I have learned. But this is a
difficult topic to cover in “a few words.”</span><span style="font-family: inherit; text-indent: 0.5in;"><br /></span><span style="font-family: inherit; text-indent: 0.5in;"></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="font-family: inherit; text-indent: 0.5in;">I start my story like many others who
are here or wish they were. I met Laurie over the Internet. I had been
diagnosed with MBC (that is, Metastatic Breast Cancer) in late 2011 and I
started to read blogs by others with breast cancer. Laurie’s blog “Not Just
About Cancer” was one of those that caught my attention.</span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<span style="line-height: 150%;"><span style="font-family: inherit;">I quickly realized that not only were
we both in Ottawa, we shared the same (wonderful) medical oncologist. I was
taken with Laurie’s story and, of course, her writing. So I reached out to her.
To my surprise, she reached back and offered not just information or support,
but friendship. For this, I will be ever grateful.</span></span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="line-height: 150%;"><span style="font-family: inherit;">Very early on, Laurie shared with me
an article by Stephen Jay Gould called “The Median Isn’t the Message” which
explained that while cancer survival stats give a median life expectancy, the
numbers actually form a curve with a very long tail. When I was diagnosed, Dr. Google
told me that the life expectancy with metastatic breast cancer was two to three
years. But the idea of the tail is that some of us will live far longer than
those two to three years. Laurie did. I am. But for a number of us with MBC, we
didn’t “get” that until Laurie shared the article with us.</span></span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="line-height: 150%;"><span style="font-family: inherit;">In addition to the her blog, her book
“Not Done Yet” and her one-on-one work with people with breast cancer, Laurie
also worked as an advocate for those of us with MBC. I’m sure that those of you
who know Laurie from her twenties are not surprised that she would take on a
formal role. With her brains and her extraordinary communication skills, she
was born for this. Until her death, Laurie was a member of the Board of
Directors of the Canadian Breast Cancer Network.</span></span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="line-height: 150%;"><span style="font-family: inherit;">Laurie’s bio on the Network’s website
says that she chose to join the Network’s board as it is the only organization
in Canada that has advocacy programs that help MBC patients and that lobbies
governments on our behalf. In May of 2014, Laurie joined Liberal MP Dr. Hedy
Fry and other CBCN representatives in a press conference on Parliament Hill to
announce Dr. Fry’s introduction of a Private Members Bill to make October 13
National Metastatic Breast Cancer Day.</span></span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="line-height: 150%;"><span style="font-family: inherit;">In her remarks that day, Laurie said
“Like most women living with metastatic breast cancer, I hate the onslaught of
pink that hits us every October. I don’t feel that all the talk of ‘feeling
your boobies,’ of battles won and lost has much to do with me. Much more
relevant to me are clinical trials, drug coverage, quality of life and the long
term effects of treatment. The prevailing theme during Breast Cancer Awareness
month, or as many of us call it, ‘Pinktober’ is ‘stay positive, get through it
and then move on.’ For those of us living with mets, for whom moving on will
never be an option, the unintended message is that we have somehow failed at
having cancer.” I couldn’t have said it better myself.</span></span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="line-height: 150%;"><span style="font-family: inherit;">In a thoughtful post after Laurie
passed away, the CBCN wrote about Laurie’s many contributions to their work. In
addition to the efforts towards a National Day for MBC in the midst of
Pinktober, Laurie’s work brought the perspective of those of us with MBC to the
CBCN's agenda. Laurie contributed, in particular, to the Network’s Living
Legacy Campaign, which honours the lives being lived by people with MBC and
demonstrates they are much more than a cancer diagnosis, and MedSearch, which
provides information on the availability of drugs to treat MBC across Canada.
What struck me about the Network’s post was how the organization recognized the
impact of Laurie’s perspective as a person LIVING with incurable cancer, not
one “defined by it.”</span></span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="line-height: 150%;"><span style="font-family: inherit;">My few words are up, but let me close
with a story about how Laurie’s ability to live with Metastatic Breast Cancer
changed the life of another friend of mine with the disease.</span></span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="line-height: 150%;"><span style="font-family: inherit;">Like me, this friend was diagnosed
with stage four breast cancer from the beginning. When she was diagnosed, she
was told she had 22 months to live. Not two years. Twenty-two months. Not
knowing much about cancer at that point, she really thought that at the end of
those 22 months, she would keel over and die. One day, she mentioned to a
doctor that she was now a year into her 22 months.<span style="mso-spacerun: yes;"> </span>That doctor was confused. When she realized
how my friend understood her prognosis, this doctor pulled out her phone and
called someone asking if she could give my friend her number. The person at the
other end said, “of course.” That is how my friend met Laurie Kingston, heard
about “The Median Isn’t the Message” and realized she had more than a year left
to live. In fact, next Tuesday will mark eight years since that friend was
diagnosed with MBC. And because Laurie met her on her bicycle – I know, typical
Laurie – my friend is still living her life, still making art, and now helping
others who are new to breast cancer. I think that is the best we can do to
honour Laurie’s memory.</span></span><span style="line-height: 150%;"><span style="font-family: inherit;"><br /></span></span><span style="line-height: 150%;"><span style="font-family: inherit;"></span></span></blockquote>
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<blockquote class="tr_bq" style="line-height: 150%;">
<span style="line-height: 150%;"><span style="font-family: inherit;">Thank you.</span></span></blockquote>
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Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com26tag:blogger.com,1999:blog-6138640911323105852.post-1319662236895924642018-02-21T17:41:00.001-05:002018-03-23T16:24:32.172-04:00Missing Laurie KingstonYes, I'm still here. But Laurie isn't. Last fall, her brain metastases spread faster than radiation could treat them. I was able to see her a time or two during treatment and while she was in hospital. But she passed away on January 8, 2018, just before I could visit her in hospice.<br />
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It is hard to know what to say about Laurie's loss. I feel it in so many ways. Laurie was a my friend. We shared some unusual commonalities. In addition to being bloggers who love needle crafts and curly-haired dogs, we have fourteen-year-olds, very bright ones. We also share metastatic breast cancer and even have the same awesome medical oncologist.<br />
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I became aware of Laurie from her blog, "not just about cancer", which introduced me to her book, "not done yet". I reached out to her online and, wonder of wonders, she reached back. Laurie was the first person with metastatic breast cancer (MBC or stage IV breast cancer) that I'd met in person. I was thrilled to meet her and intimidated by the success of her blog and book. There is a lot about Laurie that could be intimidating. She is an amazing writer. But she is, sorry was, such a down to earth person that being with her never was intimidating. She was a nice lady, a mom, a wife, a writer, a friend, and so much more.<br />
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I was so lucky to have met Laurie when I did and get a chance to develop our friendship while she was well. And she was well for a long time. She gave a great deal of hope to others with MBC, even after she was diagnosed with lepto-meningeal metastases, which are quite rare and, frankly, scary. Laurie didn't let them scare us. She simply, well it seemed simple to me, got herself into a uniquely small trial of a new therapy approach where Herceptin is introduced directly into the brain to fight these mets. It worked for a long time. Then, like most MBC treatment, it didn't work any more.<br />
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All those years that Laurie lived with metastatic breast cancer, she did more than simply live. She wrote, she knit, she raised her boys. And she advocated for change. She was a board member of the Canadian Breast Cancer Network. She was part of a lobby day for greater awareness of MBC and the need for more funding and research.<br />
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Laurie Kingston was amazing for the friend she was, but in truth, she needs to be acclaimed for her advocacy while living with this disease. It is no easy feat.<br />
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See Laurie's blog for her obituary <a href="http://notjustaboutcancer.blogspot.ca/2018/01/laurie-kingston-1967-2018-laurie-passed.html" target="_blank">here</a>.Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com4tag:blogger.com,1999:blog-6138640911323105852.post-40716239185131847942016-10-18T14:04:00.000-04:002016-10-18T14:04:01.537-04:00I'm Still Here...After Five Years<span style="font-family: inherit;">Five years. Five years since that doctor I had never met before confirmed what my family doctor suspected: I had stage IV invasive ductal breast cancer with extensive metastases to my liver and bones. Life would never be the same. Life would, very likely, not be as long as I expected. </span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I spent an hour or so searching for the latest and best statistics about metastatic breast cancer (also known as Stage IV). Here is what I found:</span></span><br />
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<ul>
<li><span style="font-family: inherit;">"<span style="background-color: white;">In Canada, about 10% of new breast cancers are metastatic when they are diagnosed, and 30% of women who are first diagnosed with early stage breast cancer will go on to develop metastatic breast cancer.</span><span style="font-family: inherit;">" (Canadian Breast Cancer Foundation)</span></span></li>
<li>"Median survival after a metastatic breast cancer diagnosis is three years. Median survival in 1970 was 18 months. <span style="background-color: white; font-family: inherit;">No one dies from breast cancer that is confined to the breast." (Metastatic Breast Cancer Network)</span></li>
</ul>
<span style="font-family: inherit;">The Canadian Cancer Society hasn't yet released their 2016 statistics, but here is what they estimated for Canadian cases of breast cancer in 2015. (Read more: <a href="http://www.cancer.ca/en/cancer-information/cancer-type/breast/statistics/?region=on#ixzz4NSTzQ2FG" style="box-sizing: inherit; color: #003399; line-height: inherit; text-decoration: none;">http://www.cancer.ca/en/cancer-information/cancer-type/breast/statistics/?region=on#ixzz4NSTzQ2FG</a>)</span><span style="font-family: inherit;">:</span><br />
<span style="font-family: inherit;"><ul>
<li>25,000 women will be diagnosed with breast cancer. This represents 26% of all new cancer cases in women in 2015.</li>
<li>5,000 women will die from breast cancer. This represents 14% of all cancer deaths in women in 2015.</li>
<li>On average, 68 Canadian women will be diagnosed with breast cancer every day.</li>
<li>On average, 14 Canadian women will die from breast cancer every day. (Or as MBC Time put it in an October 2016 campaign, "Every 2 hours in Canada, 1 woman dies of metastatic breast cancer.")</li>
<li>220 men will be diagnosed with breast cancer and 60 will die from it.</li>
</ul>
</span><span style="box-sizing: inherit;"><span style="font-family: inherit;">As for Canadian survival rates: the </span></span><span style="font-family: inherit; font-size: 1rem;">5-year relative survival (based on estimates for 2006–2008) is 88% for women and only 80% for men. These survival rates are for people diagnosed at all stages of breast cancer, I assume including Stage 0, which isn't yet invasive (hence not technically cancer). Of course the survival rate for those, like me, with Stage IV breast cancer is much lower. Unfortunately, I couldn't find a Canadian statistic to share. The American Cancer Society reports that "m</span><span style="font-family: inherit;">etastatic, or stage IV breast cancers, have a 5-year relative survival rate of about 22%." </span><br />
<span style="font-family: inherit; font-size: 1rem;"><br /></span>
<span style="font-family: inherit;">Yet here I am. Why am I part of the 22%? Well, for a good explanation of the stats, read<span style="font-family: inherit;"> the article "</span></span><span style="background-color: white; text-align: justify;"><span style="font-family: inherit;"><a href="http://cancerguide.org/median_not_msg.html" target="_blank">The Median is Not the Message</a>" by scientist Stephen Jay Gould. In addition to what he says, I would point out that </span></span><span style="font-family: inherit;">statistics are always based on the past. They reflect the diagnosis and deaths of patients treated in past years. They reflect older therapies. If I have been fortunate, it is that my breast cancer is identified as triple positive breast cancer. It is ductal breast cancer that is positive for the three receptors for which non-chemotherapy treatment is available: estrogen receptors, progesterone receptors and HER-2 receptors. Over the last several years, even since my diagnosis, important new drugs have been developed that target these receptors, interfering with my cancer's ability to reproduce itself and grow. One of these drugs is Herceptin. It costs some $45,000 to $50,000 per year. When it is combined with a newer drug, Perjeta which I don't yet receive, the cost mounts to $100,000 per year. So far, OHIP covers the cost of my Herceptin. For reasons related to how Perjeta was studied, I am not eligible for OHIP to cover the cost of adding Perjeta to my treatment, asI was already on Herceptin when Perjeta was approved. If my oncologist deems Perjeta necessary to my care, I will have to rely on my private health insurance to cover the cost above a yearly $3,000 deductible. But yes, I am fortunate that my doctors can rely on a wide variety of chemotherapy drugs as well as a number of anti-estrogen drugs, plus a handful of anti-Her-2 drugs to treat my cancer. Thanks to the prevalence of breast cancer, a great deal of public and private funds go towards research, resulting in the availability and government funding of numerous drugs to fight breast cancer. My sister-in-law, on the other hand, has a rare cancer for which only a few chemotherapy drugs are recommended, even though there is no research that supports their use for that cancer. So, I suppose I am fortunate.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Since my last post here, I have been on the same treatment: Vinorelbine (my vino or vanilla bean) chemotherapy, Herceptin and Pamidronate. Cancer treatment typically works on a three-week cycle. On Day 1 and 8 of the 21-day cycle, I get a ten-minute infusion of vino. On Day 1, I also get a half-hour infusion of Herceptin. Every nine weeks, I also get an hour of IV Pamidronate, which is a bone-building drug. I have been on this treatment nineteen months. And I will be on it as long as it works AND I can tolerate it. So, how am I tolerating it? Well, not bad. Initially, I had some stomach pains and constipation. They didn't last long. After a couple of months, I developed neuropathy. I have tingling and numbness in my pinky and half my ring finger. It settled down after a few months, but resumed intensity last month. I think that may be because I reduced my Lyrica (nerve pain) dose by two-thirds over the summer. I have also developed diarrhea that seems to be worse after vino infusions and disappear on my no-chemo week. The last two CT scans identified thickening of my bowel wall which may be pan-colitis. Fatigue is also an issue. It comes and goes, but I still have the occasional week where I seem to sleep for hours and hours during the day. Sometimes, I'm not able to rouse myself to make supper. I sleep through most hockey games and have missed the resolution of half the mysteries I watch. But I've kept my hair!</span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">My medical oncologist, to whom I literally owe my life, was on leave over the summer. Lucky for me, he was replaced by two very experienced oncologists. One was very thorough and ordered a lot of tests. The other had the world's most soothing manner. I appreciate all those qualities in a doctor. Some of the tests this summer suggested that I might have had progression in my bone metastases. I was a little worried I might have to switch to a more difficult treatment regime. Hell, I was a little worried things were going downhill. While the tests used the P-word (progression), the oncologists didn't. They felt, on balance, that my cancer remained stable. Considering that my side-effects have been a little more challenging of late, however, my regular oncologist, when I saw him last week, suggested we cut the Day 8 vino infusion. (Actually, the other doctors had raised the </span>possibility<span style="font-family: inherit;"> of a chemo holiday.) As soon as my doctor suggested dropping Day 8, a look crossed his face and he excused himself to do some checking. After talking with his colleagues in Pharmacy, he warned me that if I were to see cancer progression without Day 8 vino, OHIP might conclude I had become resistant to Herceptin and cease funding it. I am now on hold. Friday, I will get my Day 8 treatment and will continue to do so unless my oncologist can get some assurance that he would be able to maintain Herceptin and restart Day 8 vino if I progressed. When drugs are this costly, hard choices must be made in a publicly-funded system. All things considered, I am much happier to live in Canada, where most cancer treatment is publicly funded than in other countries where I would, even with insurance, have to pay part of every test and every treatment. I won't go bankrupt fighting cancer, at least.</span></span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I'm not sure if in my last post I talked about the effect of Vinorelbine on my immune system. Well, it does a number on it. I get my blood tested before every vino treatment and have been warned that seven to ten days after treatment, my immunity will hit a low point. I was advised to take a number of precautions, most of which I have abandoned after nineteen months. I was to avoid crowds, restaurants, specific foods and especially spoiled food, germs in general. As a result, I decided to stop volunteering at my daughter's elementary school where I was working with the Grade One and Two kids who were a little behind with their reading. I miss that. I really enjoyed reading with those kids, but truth be told, they were a bit of a snotty bunch. Even though I carried Kleenex and hand sanitizer to every session, I couldn't risk continuing to volunteer there. Even without it, I did end up in hospital this time last year. I developed pneumonia again, along with a plerual effusion.</span></span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Last year's hospitalization wasn't as scary as the previous two, when I was septic and had a broken pelvis (or both). But it was a little scary. I had several day of </span>delirium<span style="font-family: inherit;"> and extreme drowsiness. My niece was visiting that week and I couldn't even carry on an intelligent conversation with her. I regret that, not that I had a choice. The pneumonia was treated with antibiotics, but I had a </span>recurrent<span style="font-family: inherit;"> fever. Then the pleural effusion was found. It is basically fluid between the lungs and chest wall. I had an uncomfortable </span>procedure<span style="font-family: inherit;"> during which a tube was inserted into the pleural space. Then for several days I was attached to Fred, my name for the suction unit that withdrew the fluid. Eventually, I was disconnected from Fred and allowed to leave the hospital for a couple of hours in time to vote in our federal election. I was released the next day. I think I was in hospital for two weeks, about a week of that in isolation. Fun, fun.</span></span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">Really, other than the hospitalization, which I expect will be something I experience every year or two, things have been going well. My pain has been well-controlled for a couple of years. As a result, I was formally discharged from the Ottawa Hospital Pain Clinic. Of course, this means I have to go to my family doctor for my pain medication renewals. He doesn't do renewals by fax, except at a cost. So, every three months, I have to present myself to my doctor for renewals of the narcotic and other pain medications. Ah well, there is always room for another doctor's appointment.</span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I have just been living my life, and glad to do so. I try to make memories with my family, which is increasingly difficult now that we're living with a teenager. I'll give her credit. She was very grateful for the two week trip we took to Cape Breton Island and Moncton this summer. She is a grateful kid, with only occasional flares of "teenagerness." For this, I am grateful. Together we did the <span style="font-family: inherit;">Run For the Cure earlier this month. We were out of town visiting my sister-in-law the weekend of the Run, so we did it in Mississauga. We both missed our teams, hers her elementary school teachers and mine a metastatic team. But we ran in the morning, before spending the afternoon with family and driving home to Ottawa.</span></span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">I have no good excuse for not blogging more. Just that I'm living life. And isn't that what it's all about? Here's hoping in another five years I post again, if not sooner. </span></span><br />
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<br />Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com16tag:blogger.com,1999:blog-6138640911323105852.post-62162785642307846762015-02-03T19:02:00.000-05:002015-02-03T19:39:09.651-05:00Back to ChemoWhere has the time gone? I don't even have an excuse for not posting since October. Well, a little excuse. I was scared to face the truth.<br>
<br>
Like I mentioned in June, my breast lump grew back. Since then, we have been talking a lot about it, considering options. Initially my oncologist suggested that if the lump was problematic, the options were surgery and radiation. I saw my radiation oncologist in the fall. She wasn't inclined to radiate the breast unless it was causing a lot of pain. I had pain, but intermittently, and mild. Later in the fall, one of the physicians who supports the oncologist felt the lump and suddenly, a chemo trial was on the table. It was a trial with Xeloda and either Tykerb or a new anti-Her-2 drug. I will admit the prospect of chemo surprised and scared me. I didn't expect that, since I've felt quite positive about my experience with Taxol at the beginning of my treatment. Taxol and Herceptin was my first line of treatment. After a year of that, I took a short break and then started Tamoxifen with Herceptin. The Xeloda trial required two previous lines of treatment, I learned that only chemo counts as a line of treatment in the trial world, so I was ineligible. Tamoxifen didn't count.<div><br></div><div>The physician ordered another round of scans. I did a bone scan and the results showed stability in my bone mets. I was starting to think the breast mass was simply necrotic (dead) tissue. I wanted a biopsy before stating a new treatment. Then we got the CT scan results. Not only had the breast lump returned, it was continuing to grow. And, there was a second breast tumour I hadn't noticed. And there was some thickening in the abdomen that could represent new small tumours. And there is a mass next to my uterus. Chemo it is!</div><div><br></div><div>Ten days ago, I started Vinorelbine, with Herceptin. Clearly systemic treatment is required. Vinorelbine, which I like to call vanilla bean, is known to have milder side effects than chemos like Taxol, for example. So far, I've had some indigestion and constipation. So far, my hair hasn't gone anywhere, but it is too soon to tell if I'll lose it. I pray that the vanilla bean will be effective, with few side effects. I could use your prayers as well.</div><div><br></div><div>I will be in Vinorelbine for as long as it works and I can tolerate it. An ultrasound is being scheduled to investigate the uterine mass. And, I hope, I will get back to blogging, both here and on my family history blog. It has been too long between posts. Glad to be back.</div>Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com25tag:blogger.com,1999:blog-6138640911323105852.post-40321421272919756232015-02-03T18:51:00.001-05:002015-02-03T18:51:08.223-05:00Stage IV Snapshot: Broken RibPart of everyday life with bone mets is never knowing when a fracture is around the corner. I would have thought, at this time of year, my biggest risk would be slipping on the ice and breaking my hip. The actual culprit:<br />
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Yup, the dog. I was in bed yesterday when Mango came up and stood her front paws on my chest. A few hours later I noticed the pain. The good news is that the pain only lasts a few days. Ribs heal quickly enough. I know this because this isn't the first broken rib I've had since cancer came into my life, the last break was around Christmas. At the time, I blamed it on exertion while carrying the Kitchen Aid mixer up from the basement to make cookies.</div>
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This is life with Stage IV. Cookies, puppy kisses. Each risks a broken bone.</div>
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Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com13tag:blogger.com,1999:blog-6138640911323105852.post-47211427786798982762014-10-18T06:00:00.000-04:002014-10-18T06:00:00.966-04:00Three YearsIt was three years ago today that Geoff and I sat down with a surgeon at the breast clinic and got the results of my biopsy. I was diagnosed with stage IV invasive ductal breast cancer with metastasis to my liver and bones.<div>
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The average life expectancy for someone with stage IV breast cancer, particularly with metastasis to the organs, is three years.</div>
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Three years.</div>
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But I am not a statistic.</div>
Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com13tag:blogger.com,1999:blog-6138640911323105852.post-11745979266195435772014-10-03T12:32:00.001-04:002014-10-03T12:32:14.104-04:00Stage IV Snapshot: the pill boxToday I had to fill my pill boxes for the week. I count out all the right pills for the right time of day. The little blue set I keep beside the bed. I take those pills as soon as I wake up. They are mostly pain pills, long and short acting, to get me going. I usually awaken very stiff and sore, particularly in my lower back and hips. I also take some stomach pills then. They work best if taken a little while before eating. The other pills pull out of the big case one day at a time. If I will be going out of the house, I transfer them to a smaller daily case that has room for extra short acting pain narcotics to deal with breakthrough pain. I have pulled something in my back or ribs. I am pretty certain it isn't a fracture, so I didn't get an x-Ray, but the pain requires frequent top-ups of my Dilaudid. The daily pills are taken with breakfast, lunch and supper, and finally at bedtime. So, best case, I take a handful of pills five times a day. In reality, because of the breakthrough pain, it is much more often than that.<br />
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Here is what I take on a good day. The breakthrough Dilaudid aren't there. See, I told you. Handfuls of pills.</div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">If you were wondering about that little white pill in the middle. That is Tamoxifen. That is the ONE pill I take that fights cancer. One pill. I take it with supper, my biggest meal, because it is very hard on the stomach. Due to the Tamoxifen, I also take two Prevacid and four Maxerand a day to quell the nausea. It usually works. This afternoon I will go to the cancer centre for my treatment. No longer on chemo, I am still getting Herceptin by IV to stop the cancer. I get it every three weeks. I will also get Pamidronate today to help my bones rebuild, I get it every nine weeks, if my creatinine level doesn't creep too high. Pamidronate is hard on the kidneys and my kidneys are showing the strain. Herceptin can damage the heart. Thank God that hasn't happened yet. I get an echocardiogram every three months to check my ticker. So far, so good,</span></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Most of my pills are for pain. Four Naproxen, a NSAID also known as Aleve. Three hydromorphone contin, a long acting narcotic said to be stronger than morphine. Then there are three Lyrica for nerve pain. I also get the occasional epidural to help with nerve pain. Oh, and because all the narcotics make me sleepy, I now take Ritalin in the morning and at noon. Ritalin is a stimulant. It works paradoxically in people with ADD to calm them down. It generally wakes me up. I don't take it every day, so it's not in the picture. I took it yesterday at noon and nevertheless I was groggy by one o'clock. It doesn't work perfectly. And then at night I take an Ativan. It is an anti-anxiety drug that I take to be able to sleep through the night, I think I am hooked on it now, I don't like that much, but I am very cranky when I don't sleep, so I keep taking it</span></div>
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A picture tells a thousand words. That is why I use my Stage IV Snapshot blog posts to give you a picture of my life with advanced breast cancer. I don't believe that the millions that are spent on breast cancer awareness have done much real good. In addition to taking attention away from other cancers unfairly, breast cancer awareness hasn't spread awareness of key facts, like how many of us are at risk of breast cancer. One in nine women will get it. Men get it too. And did you know that nearly a third of patients treated for early stage breast cancer will have it return outside the breast as Stage IV cancer. They thought they were cured, but there is no cure for breast cancer.</div>
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I try to raise awareness of life with Stage IV breast cancer, whether it is the emotional side, or like today the pharmaceutical side. I hope I can make a difference. Let me know.</div>
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Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com25tag:blogger.com,1999:blog-6138640911323105852.post-11129427433668073092014-09-06T16:27:00.000-04:002014-09-06T16:33:12.104-04:00Port-a-KathThat is me. I've done it. After eight or nine months with a PICC line, I gave up and asked for a Port-a-Cath. I found the dressing constantly itchy. We tried paper dressings and iodine, but still I scratched. The new PICC dressing became available, and it too caused itching. As much as I enjoyed the nurse's visits I was getting, I was done with the PICC.<br />
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I asked for it at my last oncology appointment, and within eight days I had the port in. Now it is the stitches that are itching! Is there no respite for me? A gripper, also known as mini-loc, is on place, with dressing over it for another week. It will come out after my Herceptin treatment next Friday.<br />
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I was not pleased to learn that the port can't be used for a CT scan, like a PICC can. So on Thursday I had an IV and a port put in and a PICC removed, only to have another IV put in on Friday for the CT. That plus the blood tests, makes for some bruising.<br />
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If you're keeping score, that is now three PICCs and two ports. Will this be the last? I told the doctor who inserted the port about the bruising and infection I had with the last port. He assured me those were unusual experiences and that it would be very unlikely for me to have trouble with the new port. Here's hoping it works for many years.Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com14tag:blogger.com,1999:blog-6138640911323105852.post-77230414128075049802014-06-29T18:21:00.002-04:002014-06-29T18:21:39.677-04:00What's New With MeWhat's new with me? Very little, I'm pleased to report.<br />
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I saw my oncologist this past week and got the results of the latest series of tests. The Herceptin can harm my heart, so I need an echocardiogram about every three months. I did the test earlier this month and my "ejection fraction" rate is just fine. I had also had a CT scan, the first since January, I think it was. My GP likes to be able to deliver good news, so he had already let me know that my tumours are stable. The remaining liver spot appears "treated." There is nothing new in the rest of the abdomen and pelvis. The bone tumours are still there but stable. My oncologist's colleague, who I saw last visit, had ordered an MRI of my axillary skeleton. The previous MRI, to which it was compared, was from May 2012, about halfway through my chemo. As a result, there were some new spots that showed on the MRI. Nothing to worry about. More importantly, the MRI showed fatty infiltration, which in English means the bones are healing.<br />
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I asked the oncologist to check out my right breast. That is where the lump was, the lump that started shrinking after the first chemo treatment. Until recently, the lump was gone and the remaining fullness was barely perceptible. That has changed. Now it feels like a lump to me. I have had some pain in that breast as well, off and on. I was a little worried. I had always felt relieved that I hadn't needed a mastectomy. For the first time, I wish that breast was gone. My oncologist, who I trust very much, didn't think it is worrisome, he said it felt "stringy." We will keep an eye on it. If it changes further, a mammogram may be needed.<br />
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In other news, Dad and I have been busy all month dealing with financial advisors and the lawyer, settling Mom's estate. There are some forms still needing to be signed. And we haven't even started cleaning out her room. This will take a while. Meanwhile, I try to call Dad daily and see him a couple of times a week. He is coping well, but is lonely. I miss her too.Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com13tag:blogger.com,1999:blog-6138640911323105852.post-59094790087593462302014-05-21T12:06:00.001-04:002014-05-21T12:07:21.816-04:00She's GoneMy mom passed away suddenly on May 13, early in the morning, before Dad and I went to visit. Her vital signs were fine at shift change. An hour later, the nurse found she was gone. I was so shocked, I thought it had to be a joke, a terrible joke. Of course it wasn't. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">In the end, despite those conversations about "goals of care" Mom went on her own timeline, or rather God's. She couldn't be resuscitated because the hospital staff didn't know she was dying. They think she went quick. My God, I hope so.</span><div><br></div><div>The last week has been a blur. I felt like I was at work again as Dad and I were in meetings all day for days planning the funeral. Then there was the flurry of preparations, like baking, making a collage and receiving visitors. Mom was a wonderful baker. In her honour, friends and I baked cookies, biscuits, loaves and squares for the visitation Monday night. My cousin flew up from Delaware -- well, you can't fly out of Delaware, but that's another story -- and my godmother, who was Mom's best friend, and her daughter, who was Mom's goddaughter, came. Mom's family wasn't able to come, but sent flowers. </div><div><br></div><div>There were a lot of flowers. Beautiful arrangements and sprays. Vivian of Vivian's Flowers on Merivale Road did a terrific job, even when her supplier sent the wrong colour snapdragons and the holiday weekend made replacements impossible to get. I found myself taking pictures of the arrangements. I was compelled to. Do you know why? I felt I had to take pictures of the flowers to show mom, since she wasn't there.</div><div><br></div><div>There were more photos, of the casket, of Mom. Dad wanted me to take them. So I did. I am trying to do all I can to help a Dad deal with Mom's death. Oh those words are so hard to say -- "mom's death." So final.</div><div><br></div><div>Without Mom's family, I wasn't sure what or who to expect at the visitation the night before the funeral. We did it for us and for tradition. My friends didn't let me down. Old friends, co-workers and neighbours came, people who have helped support me in my illness. New and old neighbours of Mom and Dad also came.</div><div><br></div><div>The funeral was yesterday. It was harder. A smaller crowd, but a good crowd nonetheless, came to support us. Sweetie, the Bean and I did readings at the funeral Mass. I could barely read the last few lines through the tears. I thought I could do it easily enough. I was wrong. I don't think I'll do it again.</div><div><br></div><div>Now, like finishing cancer treatment, I need to find a "new normal," one that doesn't involve getting to the hospital every day to visit Mom. I will call Dad every day. I will helping deal with mom's will and finances. We will have to go through her clothes and effects. Then there is the question of how long he keeps the house and the job it will be to downsize, particularly to a one-room retirement home suite. So, it isn't really over. In fact, the grieving has barely begun.</div><div><br></div><div><br></div><div><br></div><div><br></div>Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com23tag:blogger.com,1999:blog-6138640911323105852.post-15132347422230206632014-05-11T12:42:00.002-04:002014-05-11T12:42:29.368-04:00A Bittersweet Mothers DayAny Mothers Day that I am still here with the Bean is a good one. She is eleven now, and coming into the years when she really, really needs a mother. I am grateful to still be here for her. But my own mom's difficult state makes the day bittersweet.<br />
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Last night I was instructed not to get out of bed in the morning but to just call, or ring my bell. Sure enough, Sweetie and the Bean made me breakfast in bed. This year, it was more sophisticated than most. She made me a cheese and tomato omelet. Plus juice and tea. There must be tea. I think our dearest memories of our mothers involve tea. There were presents too. A gift certificate for a pen I ogled recently. A writer needs a good solid pen, not the one I liberated from the hotel last weekend. And a Pandora charm. Not the bracelet I tried on or one of the hundred charms I had marked off in the catalogue, but the one the Bean chose -- because Mommy likes pearls. It is beautiful. (When we returned from Montreal last weekend, she and I spent an hour combing through my jewellery box and trying on dresses. We spent a lot of time on the pearls. My little Bean pumped me full of confidence in my appearance, something cancer has tried to take from me.)</div>
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I have some time to write now while they walk the dog. I am mentally preparing for the trip to the hospital. Mom has been moved out of ICU to the Acute Monitoring Area so they can continue to watch her oxygen desaturations. She is in a private room due to an antibiotic-resistant infection. We appreciate the privacy, particularly as my brothers were here yesterday and the room was crowded. </div>
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She still isn't able to communicate with us. We can only guess at her level of consciousness. And yet we had to have another conversation last night about our "goals for care." What happens next time she has an infection and goes septic? Do we treat with antibiotics? Do we treat her low blood pressure, requiring an ICU admission? Do we ventilate her if necessary? <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">None of us ever imagined she would be brain damaged and paralyzed. What would she say she wants? To slip away peacefully or to die trying? Do we use medical interventions because they are available? Must we? Should we? Her last words to us were to request all possible treatment. "I want to live." Does she still? And who am I to decide? </span></div>
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<i><b>Have you talked to your parents about their wishes? Have you considered your own? Have you considered all the options? Or put it in practical terms? Have you decided when your quality of life determines its value?</b></i></div>
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<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Thanks to cancer, my brother and sister-in-law and my Sweetie and I have had to ask ourselves these questions. We know the day is likely to come when further treatment will not buy us another day to hug our children -- which is all I want in life, I suppose. I haven't answered all the questions yet. For today, I will go to the hospital today, hug my Mom and drink a cup of tea. And be grateful she is still here.</span></div>
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Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com6tag:blogger.com,1999:blog-6138640911323105852.post-45356853236566022162014-04-14T19:56:00.000-04:002014-04-14T20:03:18.319-04:00Another Shot in the BumLast June, I got my last shot in the bum in the name of science. I had a caudal epidural to ease my nerve discomfort. It took a while to work, but one day I realized that the tingling was gone. I could move into all sorts of positions without a zing.<br>
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In the last month or two, the tingling has returned, so I scheduled another epidural at our Pain Clinic. With the muddy weather, my daughter and I have had to give Mango several baths, sometimes in the same day. Bending over, even from on my knees, has caused my entire left buttock to tingle. That's not as much fun as it sounds. Just bending slightly over the sink to brush my teeth causes the same problem. I get a different tingle if I lay down on too high a pillow. Installing a car harness for Mango in the van was distinctly uncomfortable.<br>
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In advance of my two o'clock appointment, I had to fast from 8:00 am. I could take clear liquids until noon. I got to the hospital early for my appointment, as they requested. [Really, if they want you there twenty minutes early, why don't they make the appointment for 1:40?] I scarcely had time to complete the usual paperwork on my pain before the nurse called me in. From there, it was zoom, zoom, zoom and I was out within the hour.<br>
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The procedure is awkward, for all concerned. First, I had to lie face down on a slanted table with a pillow under my hips. As soon as the table was straightened and raised, my pants were lowered. Yes, the handsome technician, or was he a nurse, exposed my tingly buttocks and washed them with a bright pink cleanser. Since I had had the procedure before, the doctor and x-ray technician easily found the spot the we're looking for. The doctor shot some local anaesthetic into, um, my bum-crack. It worked instantly and before I knew it she had injected the steroid. Pants up, I was moved to a chair and given a snack while my blood pressure was monitored.<br>
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Never one to put my feet up when I am supposed to, my Sweetheart and I stopped at a pet store and the veterinarian's before returning home. I have tried to stay mostly couch-bound since then, the local has worn off, but the steroid isn't yet working. So I have a sore and still tingling bum.<br>
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The doctor used a lower steroid dose than last time, since I described my previous side-effects. Last time, I had the typical steroid face: round, red, hot cheeks. I felt "odd" for a couple of days, and low, like chemo low. And I had chills. I was just rereading my blog posts from June 2013 and remembering the side-effects. Ew. Like childbirth, it is good to forget. I hope with the lower dose, I can avoid all that. Either way, for me to do it again, it really had to be worth it. I just hope it works as long this time.<div><br></div><div>There is a lot of good information from hospitals and clinics to be found online. But <b><i>if you are considering a caudal epidural and would like to talk to me about it, please email me at jimsgirlblog at gmail dot com.</i></b> I would be happy to answer any questions you have. You should also have a look at my posts from last June about the procedure.</div><div><br></div><div><b><i>Have any of you, dear readers, had a caudal epidural? What was your experience like?</i></b><br>
<br></div>Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com13tag:blogger.com,1999:blog-6138640911323105852.post-16547176936377586142014-01-08T22:59:00.001-05:002014-01-08T22:59:18.617-05:00A Little Good NewsI got good news today on the CT scan I did late last week: stable. That's the magic word. I am relieved, more than you know. The thing is that I just don't know if I could handle hearing my cancer had spread. I could stand chemo, but not more bad news.<div><br></div><div>Mom is still in the ICU, paralysed from the neck down and unable to communicate. I try to go to the hospital every day. It isn't easy to take a day off, but I do here and there, like Monday when we had had freezing rain all night.</div><div><br></div><div>I expect that I will be posting very, very infrequently for the next while. That is just the way it has to be.</div>Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com16tag:blogger.com,1999:blog-6138640911323105852.post-13694034524511500762013-12-15T11:06:00.000-05:002013-12-15T11:06:04.129-05:00Now Mom Needs the MiracleLast Tuesday evening, my mother fell down the stairs to the basement floor. She was taken by ambulance to the local hospital with a trauma centre. She couldn't feel or move her legs. Initially they thought she was in spinal shock, like a concussion but of the spinal cord. With this, ability can return. But it is no longer spinal shock. And she has a fracture in her neck (and several other places). There is also some level of paralysis in all four limbs as well as some of her breathing muscles. Her heart started to fail that first night and it was thought she needed a pacemaker to survive. <br />
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And that is what she wants, to survive. When we asked her of her resuscitation wishes she said clearly, "I want to live." When we explained we would live the rest of her life in a hospital, she didn't change her mind, she just asked for the treatments that were necessary.<br />
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Mom had a fall thirteen years ago on an escalator in the Milan train station. She was behind me and fell backwards. I panicked like a child and she told me to calm down, she was alright. And she was. A few bandaids later, she was insisting on carrying her own luggage again<br />
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This is what I am made of. Cancer, shmancer! Calm down. I'll carry my own baggage. I want to live.<br />
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But today, my mom is the one needing our prayers, needing a miracle. It is very hard to let God's will be done. Mostly because we don't know what it is. Many of you have been keeping me in your prayers. I am still stable. For the next while, would you please keep my mom in your thoughts and prayers? Thank you very much.Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com22tag:blogger.com,1999:blog-6138640911323105852.post-22565968957219814842013-11-25T17:46:00.002-05:002013-11-26T12:34:15.527-05:00Stage IV Snapshot: Why get a PICC or a Port<div class="separator" style="clear: both;">
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Perhaps I'll get one before my next treatment.</div>
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Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com10tag:blogger.com,1999:blog-6138640911323105852.post-1508617434125080082013-11-22T16:16:00.001-05:002013-11-24T12:49:47.541-05:00A Guest post from Geoff on my Hospital StayI have been a little quiet again. First, I spent a week at my brother's helping out after his wife had major cancer surgery. I came home on the train with nothing worse than swollen ankles. Then all hell broke loose. I will let Geoff tell the story, because I was in no position to. Here is a very scary story do infection gone bad. Surprisingly, this could be the way I go out from cancer, but not yet.<br />
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From today's <a href="http://geofftakeson.blogspot.ca/" target="_blank">Geoff Takes On</a> (links added Nov 24):</div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i>A couple of weeks ago, on a Saturday evening, Kate and her mom returned from a trip. I picked them up at the train station and both were tired, but in good spirits. Sunday morning, Kate started feeling a little under the weather - vomiting, chills and coughing. By Wednesday evening, she was delirious, incoherent and clearly hypoxic with blue-tinged lips and eyelids. She had brought our ten-year-old daughter to bed and fallen asleep beside her. I woke her up and we moved to the adjacent bedroom, where I tried speaking with her. She was make absolutely no sense and was having trouble answering simple arithmetic questions. Then she realized she had taken a double dose of the medication she is taking for issues related to her cancer, including an opiate for pain.<br /><br />I was very concerned, and Lena was terrified despite Kate's slurred assurances that she would be fine. Finally, Lena and I insisted on taking her to the hospital. When we arrived we went directly to ER nurse's station. I could sense a bit of hostility from the triage nurse and could imagine her thinking "They came to the ER for a cold?". The nurse took Kate's vitals and I could see the concern sweep over her face - her heart was racing, her blood pressure was very low and her oxygen saturation was at a scary 75%. She told us that Kate likely had an infection that had gone septic (entered her bloodstream). Seeing how terrified Lena was, she suggested we stay in the waiting room while Kate was brought back to be hooked up to oxygen and fluids. Once that was done, Kate would look a bit better and hopefully be more lucid. Then I could bring Lena back to see her mom in a better state and that would calm her down. This was the first of many acts of kindness we would experience that night.<br /><br />Indeed, we brought Lena back and she kissed her mom and had a few words with her and she heard the doctor, Dr. Caytak, tell me that Kate had pneumonia that likely went septic but that she was being treated with powerful antibiotics and fluids and would be fine. Eventually, the nurses and doctors convinced me to take our daughter to my in-laws, which I did.<br /><br />When I returned to the hospital about an hour later, I walked into Kate's room and she seemed to be sleeping fitfully. A few minutes later, a doctor from Medical Oncology came in wanting to examine her. He tried waking her up, first calling her name, then gently shaking her. She would not awaken. The doctor became more insistent: yelling in her ear, shaking her vigourously, jabbing her sharply in her feet with his pen and pressing very hard on her finger nail with his pen and finally shining his penlight into her eyes. He told me: "This is very concerning" and rushed out to consult with the ER doctor. Dr. Caytak showed up, staying in the doorway looking from Kate to the monitor that was tracking her vital signs. Then all hell broke loose.<br /><br />The doctor yelled, "She's going into respiratory collapse!" and he called to an orderly to come bring her to the Resuscitation Area. The orderly sauntered toward the room and the doctor yelled "Hurry! Hurry!" The orderly ran in and rushed her down the hall towards resuscitation and every doctor and nurse on the floor exited right behind them.<br /><br />"Hysterical" isn't a very flattering word to describe someone's state of mind, but that's exactly what I was. In that moment I thought my wife was going to die. I was sobbing and begging for her to live, for the doctors and nurses to save her life. I couldn't get my head around being without her. I couldn't imagine how I would tell our beautiful, sweet little girl, who just an hour earlier heard the doctor say "She'll be fine", that her mommy passed away.<br /><br />A nurse named Dan came out and started to try to talk me down, explaining that they were getting ready to intubate her and put her on a respirator and that she was surrounded by a very professional team that was well trained and equipped to deal with the situation. He spent maybe five minutes with me, but I'll never forget him and the enormous gratitude I felt for him giving me that faint bit of hope.<br /><br />Several minutes later, the medical oncologist, Dr. Holmes, I believe, came out to say that as they were preparing to intubate her, Kate awoke from her slumber (wondering, she would later tell me, what the hell was going on and why was everyone standing around her like that) and was talking. I was able to see her, still sobbing, and eventually they returned her to her room.<br /><br />I don't remember who explained to me what had happened or when they told me, but here's the story: When Dr. Caytak returned with Dr. Holmes to Kate's room and witnessed his failed attempts to arouse her from her sleep he saw that her blood pressure and respiratory rate were dropping - essentially they feared she was about to stop being able to breath on her own. They explained that her septic infection lowered her blood pressure and respiratory rates to an already low level. Then someone realized that among the drugs she had doubled up on in her delirium was a long-lasting opiate called dilauded and when that started kicking in, her vitals started declining even more. Once they realized this, they were able to counteract the effects with an anti-narcotic medication called Narcan and her vital signs stabilized.<br /><br />The next several hours were very stressful: her blood pressure and respiratory rate remained low and here heart rate fast, but they were stable and eventually began to improve. Kate was eventually moved to a part of the hospital called the Acute Monitoring Area, where her vital signs could be monitored continuously. After a day or so there, she was released to the General Medicine ward and was eventually released the Saturday after we first took her to the hospital. Unfortunately, the day after she was released, she was feeling worse and had to be readmitted. Finally, just yesterday, eight days after we rushed her to the hospital, she was again discharged, hopefully for good this time. Though her recovery from the pneumonia will likely be long, she is feeling much better than she did even two days ago.<br /><br />As an added bonus, now that she's home again, she can work on all the dishes and laundry that have piled up for the last eight days.</i></span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i><br />So many people to thank. I was really impressed by the care Kate and I got at the hospital. I don't know the name of the triage nurse who saw her first, but she along with the Nurse-in-Charge, Bonnie, got Kate in to see a doctor right away and showed tremendous compassion towards one very scared little girl. I cannot say enough about Drs. Caytak of the ER, Holmes of Medical Oncology, Sun of General Medicine. Kate's nurse that first night in Emergent Care, Anny, was just the type of person who should be in health care: professional, empathetic and very, very kind and just a quality human being. I really can't thank her enough. Also, Dan, who I talk about above, who had to deal with me at what had to be the scariest moment of my life.<br /><br />Kate had the help of so many doctors, nurses, orderlies, respiratory therapists and physiotherapists over the next several days that I can't possibly mention them all here, but am grateful to everyone in Emergent Care, the Acute Monitoring Area, the General Medicine Ward and the Lung Disease Ward. Also many thanks to all the doctors from Medical Oncology who treated her after she was admitted the second time, notably Dr. Foeschl and Dr. Condan.</i></span><br />
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><i><br />Finally, I can't thank enough all the friends and family who visited Kate or called or encouraged her via Facebook and for supporting me and Lena.<br /><br />Though I complain a lot about suburbia, Kate, Lena and I have among the best neighbours in the world. I especially want to thank Barb, who cooked for Lena and me, who visited Kate in the hospital and who picked Kate up at the hospital and drove her home so she could spend a few hours with her family on her birthday. I also want to thank Pam for, among many other things, looking after the dog so I could spend more time at the hospital with Kate. </i></span></div>
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Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com10tag:blogger.com,1999:blog-6138640911323105852.post-62798905436029776232013-10-19T14:43:00.002-04:002013-10-19T14:43:57.885-04:00No, I Haven't Been Ignoring Breast Cancer Awareness MonthI haven't, really. In fact, I have been busy. My daughter and I walked the 5km CIBC Run For The Cure a couple of weeks ago. Between the two of us, we raised nearly $2,000 for the Canadian Breast Cancer Foundation, thanks to the generosity of our family, friends, neighbours and teachers. Much of that money will go to research. In fact, have a look at <a href="http://m.youtube.com/watch?v=NVSEMMqtu7c&desktop_uri=%2Fwatch%3Fv%3DNVSEMMqtu7c" target="_blank">this video</a> about how the Foundation uses the fund that are raised.<br />
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I have also been reading posts by my favourite bloggers. I have even written a guest post for "Telling Knots" which was published today. The timing is apt, as yesterday was the two year anniversary of getting my biopsy results, the day we told our daughter I had in curable breast cancer. Please stop over at "<a href="http://tellingknots.wordpress.com/" target="_blank">Telling Knots</a>" to read <a href="http://tellingknots.wordpress.com/2013/10/19/pinktober-guest-post-kate/" target="_blank">my post</a> and the other guest posts she is publishing this month. Like many bloggers this month she is putting the focus on those of us living with mets (that is, advanced breast cancer).Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com6tag:blogger.com,1999:blog-6138640911323105852.post-50270267267074546712013-09-29T21:18:00.001-04:002013-09-29T21:18:18.950-04:00Stage IV Snapshot -- Now Asthma<div>
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With cancer, if it isn't one thing, it's another.</div>
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I managed to catch my dear daughter's cold this week. It came on strong. Within days, all I could do was sleep -- if I could sleep over the noise of my breathing. My voice is frequently a mere squeak. Fortunately, I had an appointment with my GP on Friday. He diagnosed me with virus-induced asthma. I have had "noisy breathing" off and on but never realized what it was. Now I have two puffers that generally keep my breathing silent.</div>
Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com3tag:blogger.com,1999:blog-6138640911323105852.post-103927526472189262013-09-24T23:01:00.000-04:002013-09-24T23:47:24.823-04:00I'm Not Doing It, The Port That IsJust a quick update, folks. After much thought, and discussions with nurses and my husband, I have decided not to go ahead with the insertion of the Port-a-Cath on Thursday.<br />
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The key factor for me was that my current treatment is oral Tamoxifen daily and infusions of Herceptin and Pamidronate every three weeks . These drugs don't damage the veins like chemo does. So I don't really need the port now. At some point, I should expect that this treatment will fail. Eventually I will have to go back on chemo. At that point, I will need either a port or a PICC. But I will wait until then.<br />
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For those of you who are deciding whether to get a PICC or a Port-a-Cath, here are the pros and cons as I see it. Please check with Dr. Google to learn about other aspects that I didn't experience:<br />
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Note: as soon as I hit "publish" I thought of more items for the list. They are marked with a "*".<br />
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<em><strong>Port-a-Cath</strong></em><br />
<u></u><br />
<u>Pros</u><br />
<ul>
<li>Protects veins from chemo.</li>
<li>Once the incision heals, you can shower and swim normally.</li>
</ul>
<u>Cons</u><br />
<ul>
<li>Both inserting and removing the port require minor surgery. Healing from the port insertion feels like you've been kicked by a mule. I was aching and taped awkwardly, which made me walk like Igor from the old horror movies.</li>
<li>*The port site is exactly where your child's head cuddles you. Seat belts and bra straps will also irritate the site.</li>
<li>The port may erode the skin above it. In my case, I had persistent bruising at the port site (not normal) and later an infection.</li>
<li>I could feel where the wire looped up my neck. It was a little painful. Definitely icky.</li>
<li>In Ottawa, an appointment with a nurse is required to use the port for a blood test. If you want to leave the Gripper needle attached between the blood test and treatment, sterile dressing is required. So much for showering normally.</li>
<li>If your port isn't accessed every four weeks, you need a nurse to come to flush it.</li>
<li>The incisions (there are two of them) and the port site could form keloid scars. At the suggestion of my dermatologist, my doctors injected Kenalog (a type of cortisone) at the incision site to reduce the chance of keloids forming. It worked, so far.</li>
</ul>
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<strong><em>PICC</em></strong><br />
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<u>Pros</u><br />
<ul>
<li>Protects veins from chemo.</li>
<li>Painless accessing of the PICC for blood tests and IV medication.</li>
<li>Removing the PICC is easy. They slowly pull it out. I watched; it was cool.</li>
</ul>
<u>Cons</u><br />
<ul>
<li>You walk around with a bit of tubing sticking out of your arm the whole time. This is covered with sterile dressing. It is annoying in the summer. I had a weird tan that year.</li>
<li>A nurse must come weekly to change the sterile dressing and flush the PICC line.</li>
<li>You can't swim.</li>
<li>To shower you have to wear a plastic sleeve to keep the dressing dry. Your arm never gets a good scrubbing.</li>
<li>In Ottawa, an appointment with a nurse is required to use the port for a blood test. </li>
<li>If you are sensitive to adhesive, like I am, you may need to use Mepore (paper dressing) to avoid irritation. I later changed to IV3000. My skin was fine while I had the PICC, but I had some scabs form after the PICC was removed and the dressing taken off for good.</li>
</ul>
<strong><em>No PICC or Port</em></strong><br />
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<u>Pros</u><br />
<ul>
<li>No holes in your body.</li>
<li>You can swim and shower normally.</li>
<li>You can walk in for blood tests either at the hospital or a local blood lab. No appointment necessary.</li>
</ul>
<u>Cons</u><br />
<ul>
<li>Chemo can damage your veins.</li>
<li>Blood tests and treatment will require a poke in the arm. If your veins are hard to find, as mine sometimes are, maybe two pokes. You may bruise at the site of the poke.</li>
</ul>
That is all I can think of. I hope these pros and cons will be helpful to someone that's just starting out with cancer treatment. I know I will come back to the list when I have to start chemo again.<br />
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Please add a comment with your experience with PICC lines and ports.Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com13tag:blogger.com,1999:blog-6138640911323105852.post-57894192735499137152013-09-21T12:29:00.002-04:002013-09-21T12:29:54.918-04:00Bye-Bye Port-A-Cath, Forever?Well, so much for that Port-A-Cath. After only ten months, my <span style="background-color: rgba(255, 255, 255, 0);">Port-A-Cath abscessed and had to be removed. Apparently this usually happens in patients with little extra fat. I guess I just got lucky, not thin.</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">The removal surgery, two weeks ago, was fairly straightforward. It was done with local anaesthetic and dissolvable sutures. I needed to be careful not to lift too much, which is hard with a new puppy who isn't confident on the stairs. Afterwards, I had to have my Herceptin and Pamidronate by IV, which went well.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">Next Thursday, I am scheduled to have a new port inserted on the right side, just in time for my next treatment. But I am having second thoughts. I have been off chemo nearly a year. The Tamoxifen is keeping my tumours stable. I get Herceptin and Pamidronate every three weeks. If I understand right, they aren't as hard on the veins as chemo is. I don't know if I have mentioned it before but I form keloid scars -- scary scars that keep growing for years, long after an injury has healed. Did my skin's nature play a role in my port's abscess and erosion?</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969);">I could really use some advice. D</span>o I really need to get a new port put in? Should I just wait until the day when I need chemo again? Or should I be protecting my veins from the Herceptin? What do you guys think?</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com6tag:blogger.com,1999:blog-6138640911323105852.post-68358689293632808342013-08-30T18:38:00.000-04:002013-08-30T18:38:08.896-04:00Stage IV Snapshot -- Emergency?<div class="separator" style="clear: both; text-align: center;">
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None of us wants to go to the Emergency Room, but Tuesday night I was pretty sure I should. A sore erupted on the edge of my Port-a-Cath. That's not just unsightly. The catheter could take the infection straight into my bloodstream. I've been septic before and don`t want to risk it again. (Can you guess I spent some time with Dr. Google while waiting for a home care nurse to return my call?)<br />
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I have had persistent bruising at my port site, particularly to one side. It just wouldn't disappear between treatments, which are every three weeks. In fact, at my last treatment, I'd discussed it with my chemo nurse. She didn't have any advice for me. Earlier this week, I noticed that there seemed to be a small sore over the bruised area. I showed it to my Sweetie and we both said "hmm?" We were on our way to Montreal for a short visit and thought nothing more of it. Then when we returned to Ottawa I took a closer look at it after getting out of the shower. It was now clearly infected. The home care nurse wasn't sure what to make of it and wouldn't be able to see me until midnight or later. I called my family doctor's after-hours service and that nurse was more definitive: I should have a doctor examine it within the next four hours. Great.<br />
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We asked my daughter to hastily repack her backpack for a spur of the moment sleepover at my mom's and off we went to the hospital. Four hours later, the ER doctor assured me that I had no signs of sepsis, but certainly needed antibiotics, starting with an immediate double dose. He also suggested I give the Cancer Centre a look at it the following day. The nurse dressed the wound with antibiotic cream and gave me enough Cloxacillin that we didn't have to stop at the pharmacy on the way home. Instead we were allowed a few hours of sleep.<br />
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The next day, my Patient Designated Nurse put me in touch with Sheryl of the hospital's Port Team. She was able to meet with my when I came early for an unrelated specialist appointment (verdict of that after three months and two hours of waiting: no hip surgery). Sheryl has arranged for daily nursing to change the wound dressing. And she broke the news that my Port-a-Cath probably needs to come out. I now have an appointment next Tuesday to have it examined. It sounds like the infection needs to have subsided before they will risk the surgery. Whether they will put a new port in at the same time, I don't know. All I can tell you is that I`ve learned a few things in my ten months with my Port-a-Cath:<br />
<ul>
<li>The ones on the left side have more problems.</li>
<li>Bruising isn't normal.</li>
<li>And sometimes they erode the skin over top them.</li>
</ul>
Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com2tag:blogger.com,1999:blog-6138640911323105852.post-43294622885820078952013-08-22T16:53:00.000-04:002013-08-22T16:53:08.869-04:00Stage IV Snapshot -- Bad Girl!<div>
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We have been talking about getting a dog. So when we found out our neighbours were going away, we agreed to look after Lily. She is one of the most lovable dogs on the planet. Although it is certainly a big adjustment having a dog in the house, I see the upsides to the extra work.</div>
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Lily is a young dog, a one year old Golden Doodle. She loves to play. Sometimes, all it takes is to toss the ball for her. She even does this crazy dog thing when you make a sudden movement. But Lily also likes tug of war. The other day, I made the mistake of trying to play tug of war with her. I lost. I also hurt myself. I hope I didn't cause a new vertebral fracture. With the amount of pain killers I'm on, it's hard to tell. Not good. Bad girl!</div>
Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com2tag:blogger.com,1999:blog-6138640911323105852.post-88038048151346397782013-08-22T16:30:00.003-04:002013-08-22T16:30:30.266-04:00Paying the Price for My VanityVanity isn't the only reason I didn't bring my walker to lunch today, but it was a part of it. I feel like I look so much older and sicker with my walker. Then there's convenience. I would rather use the stairs and escalator than go around to the ramp and elevator. There is another reason. My back. I hurt it the other day (ignoring my limits) and didn't think I should lift the walker in and out of the trunk.<br />
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So I went to lunch downtown with my cane and had a great visit with my friends from work. After lunch, I stopped to chat with most of them in their offices. I didn't sit down often enough. That's why I should have had the walker, for the seat as much as the handholds.<br />
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Before I even got back to my car, I was wiped out and had to stop and sit down. I called my Sweetie on my way home and asked if he wanted me to pick up any groceries for dinner. Then I begged him to say no. I just couldn't face the grocery store. Accelerating and braking were painful. Sigh. By the time I got home I needed to drag myself inside. Straight for the couch.<br />
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I suppose that it made matters worse to have taken the dog for a walk, again with cane not walker, this morning. I'm not very bright, am I?<br />
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Honestly, There is a bright side to my foolishness. I won't shut myself in the house and wither. My nature is to regularly forget or ignore my limits. I just like to know where they are.Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com1tag:blogger.com,1999:blog-6138640911323105852.post-48495305279194600942013-08-14T16:25:00.002-04:002013-08-14T16:25:42.235-04:00Update: It Doesn't Get Better Than This!I got my CT results this morning, and as the doctor said, "it doesn't get better than this." I usually like to see my medical oncologist when I get CT results, but when they are this good and don't require a treatment change, I am quite happy to see the GP that works with him. She was very pleased to see me looking so well and to give me the good news.<br />
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While there still appears to be one significant tumour in my liver, the CT report describes it as a "treated metastatic lesion." There are no other tumours in my abdomen or chest. My bone metastases are all stable. As I understand it, they will continue to show up on the CT for a long, long time. There is something on one kidney that has atrophied. I need to read more about it. This may explain why my creatinine has been elevated, though not so much that my Pamidronate treatment has to be cancelled. I did more blood tests today in advance of treatment Friday. I'll have another look at the creatinine then.<br />
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At this point, all I can really say is: whew! While I am feeling well, I always get a little nervous after each scan, afraid that this disease has tricked me and is progressing. There has been too much bad news among the breast cancer community of bloggers and tweeters (tweeters? certainly not "twits"). I feel for my friends that are coping with bad news and painful but unsuccessful treatment. But I must give thanks to God and to all of you who have sent me prayers and good thoughts. I may still be Stage IV, but this is as good as it gets.Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com9tag:blogger.com,1999:blog-6138640911323105852.post-82633188239191824062013-08-08T20:56:00.001-04:002013-08-08T20:56:10.416-04:00Making MemoriesThere will come a time when I won't be here. It may come sooner than we think. There will come a time when I am hospitalized or bedbound. How long will it last? Today, although pain and fatigue set limits that still surprise me, my focus is on making memories for my young daughter.<br />
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Since I got sick (I was diagnosed with Stage IV breast cancer from the beginning, after a short, steep decline), we have been to Disney World, a family wedding out West, Niagara Falls, and many family get-togethers. This summer, so far, we have been to Montreal's Jazzfest, Ottawa's Bluesfest (where my daughter performed), the Diefenbunker and several other local history museums. What I haven't done is blog.<br />
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I have missed many posts, tweets, articles and the BCSM Monday night tweet chat. I have thought of my blog and you my readers often. The day she started day camp, I even started a post about what has kept me busy... That was last month. I have just been too busy to blog. I am sorry that some of you may have been worried I was unwell. Nothing could be farther from the truth. After busy days, I have crashed on the couch in front of the television most nights. Some nights I've gone to sleep at the same time as my girl.<br />
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I may not have been active in social media, instead I have been making memories. I'm not just talking about outings and photo ops. I have been spending time with my daughter doing our special things:<br />
<ul>
<li>like making triple M: Mmmm Mommy's Macaroni and Cheese.</li>
<li>cuddling in bed at bedtime, not to mention afternoon family cuddles.</li>
<li>soft kisses before bed.</li>
<li>movies and our favourite Family Channel shows.</li>
<li>our secret handshake.</li>
<li>reading the <em>39 Clues </em>series.</li>
</ul>
It's not all sunshine and roses. At ten, my girl is developing attitude. Mommy's suggestions aren't always welcome. But there are more hugs than shouts. There are many reminders that I love her more than she can know.... until she has a child.<br />
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I have missed my social media friends. However this summer, and every day I am blessed with, I will work to make strong memories that will have to carry my girl through the depths of future grief.<br />
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Jim's Girlhttp://www.blogger.com/profile/03158792309730805894noreply@blogger.com6