A Tribute to Laurie Kingston, Advocate

On March 3 of this year, a Celebration of Life was held for my recently-deceased friend, Laurie Kingston. 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.

Here's what I said:

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.”

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.

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.

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.

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.

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.

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.

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.”

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.

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.  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.

Thank you.

Missing Laurie Kingston

Yes, 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.

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.

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.

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.

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.

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.


See Laurie's blog for her obituary here.

I'm Still Here...After Five Years

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. 

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:

• "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." (Canadian Breast Cancer Foundation)
• "Median survival after a metastatic breast cancer diagnosis is three years. Median survival in 1970 was 18 months.  No one dies from breast cancer that is confined to the breast." (Metastatic Breast Cancer Network)

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: http://www.cancer.ca/en/cancer-information/cancer-type/breast/statistics/?region=on#ixzz4NSTzQ2FG):

• 25,000 women will be diagnosed with breast cancer. This represents 26% of all new cancer cases in women in 2015.
• 5,000 women will die from breast cancer. This represents 14% of all cancer deaths in women in 2015.
• On average, 68 Canadian women will be diagnosed with breast cancer every day.
• 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.")
• 220 men will be diagnosed with breast cancer and 60 will die from it.

As for Canadian survival rates: the 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 "metastatic, or stage IV breast cancers, have a 5-year relative survival rate of about 22%." 

Yet here I am. Why am I part of the 22%? Well, for a good explanation of the stats, read the article "The Median is Not the Message" by scientist Stephen Jay Gould. In addition to what he says, I would point out that 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.

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!

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 possibility 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.

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.

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 delirium 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 recurrent fever. Then the pleural effusion was found. It is basically fluid between the lungs and chest wall. I had an uncomfortable procedure 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.

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.

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 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.

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. 

Back to Chemo

Where 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.

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.

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!

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.

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.

Stage IV Snapshot: Broken Rib

Part 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:

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.

This is life with Stage IV. Cookies, puppy kisses. Each risks a broken bone.

Three Years

It 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.

The average life expectancy for someone with stage IV breast cancer, particularly with metastasis to the organs, is three years.

Three years.

But I am not a statistic.

Stage IV Snapshot: the pill box

Today 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.

Here is what I take on a good day. The breakthrough Dilaudid aren't there. See, I told you. Handfuls of pills.

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,

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

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.

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.