By Patients for Patients – A Pathology Guide for Breast Cancer Patients

Aaak – I can’t believe I forgot to post here that the first edition of the Patient Friendly Guide to Pathology Reports was published in April. Huge thanks to BC Cancer for their support throughout the creation and design of this important patient support tool. And kudos to the team at Habanero Consulting who worked with me to help make this happen.

Mostly, though, I’d like to thank the patients who relived their personal diagnosis experiences to help us build a meaningful guide to support women receiving a diagnosis of breast cancer. We couldn’t have done it without you. We gratefully acknowledge the emotional challenges you all set aside to help others have access to a tool that might help ease some of the burden in those first days of diagnosis.

The Patient Friendly Guide to Pathology Reports was designed from start to finish collaboratively with patients and oncology specialists (pathologists, surgeons, physicians and medical oncologists). That team effort helped ensure a clinically accurate guide written in simple terms to help patients understand the content of their pathology report.

Next up – chemotherapy side-effects material updated through a patient lens. Stay tuned.

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1,051,200 Minutes

I was at a Colin James concert last night on a beautiful summer evening. My friend and I commented on how perfect the weather was and we talked a bit about the hurricane rolling through Texas. It got us to remembering a horrible storm that passed through Vancouver two years ago at this time, knocking down trees, leaving thousands in the city without power.

It is one of those things that is forever seared in my brain because I had my first round of chemotherapy that weekend. I got my first chemo on Thursday, August 27 and the storm rolled through on Saturday morning, August 29, which I thought was extremely apropos given the storm happening within my body.

My friend and I chatted about the storm and the memories of seeing trees down, and the woman in front of us turned around and said – “yes, it was August 29” and I said yes, I remember it well. Her reply was “oh, I just know I always know the date because I broke my arm that day” and my quip response was “that was my first round of chemotherapy, so I remember it extremely well”. I said it lightly and with a smile and followed it by an “I win!” with a laugh. We all laughed.

Two years on I can laugh. I am doing well. Keeping fit, getting regular check ups and taking my Letrozole every day. My friend said she felt like it was just last month that I was telling her I had cancer, she could recall the conversation so well, and that it was hard to believe two years have passed.

It is a mark of how far I’ve come that it took a Facebook “memory” image popping up in my timeline yesterday to remind me what I was doing two years ago August 26. That random photo showed a friend and I attending a Whitecaps soccer game as a pre-chemo go out and have some fun/blow off nervousness evening. I’d forgotten that it was the day before chemo started.

Last year the first anniversary of chemo didn’t sneak up on me – it loomed as a big milestone. This year it was just another day.

1,051,200 minutes – how do you measure, measure two years* … when life becomes “just another day.”


*mimicking Seasons of Love from Rent

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Sorry, blog. I’ve been distracted. Fortunately, not with cancer-related stuff. The good news is – colon is clean as a whistle. Yay!

Got the colonoscopy done last week. (Scheduled it for after my big “I survived cancer” bike trip in Italy, so that’s the reason for the delay.) I watched the whole thing on the big monitor in front of me. It was really pretty cool to see the inside of my colon all pink and healthy.

You don’t feel a thing. Really. They give you a shot of something that relaxes you, turn you on your side and it’s all over in about 10 minutes. I was surprised at how many people were in the GI clinic – about a dozen, with another dozen in the recovery beds. It’s like a factory line – they prep you, send you into the scope procedure room, do the colonoscopy, wheel you out to recovery and go back down the hall and get the next person. Very efficient.

Everyone tells you the preparation to have the colonoscopy is the worst part – and they’re right. Drinking the stuff that cleans out your colon – awful. Horrible tasting stuff. It, too, is very efficient. Within half an hour of drinking it down, you’d better be beside a toilet that is exclusively yours for the evening. As my best friend said – you feel really thin after. No kidding.

The clinic nurse gave me the heads up that it can take a week or so for your gut and intestines to get back to normal. (That was another reason I decided to wait until after my trip to Italy to get it done – I planned to eat lots of wonderful food in Italy and no way was I going to have to deal with GI issues!!) It’s 5 days since the colonoscopy and the “normal” part is still a work in progress.

Here are some of the things I learned:

  • Clarity of language counts – a clinic nurse calls after you’ve been referred and asks a bunch of questions about your health. One of those questions is “are you constipated”. Here’s the thing about that question – they don’t define what constipation means. To me, constipation means not going poo every day. Ask your friends what they think constipation means – mine all thought the same as me, that it is not having a daily bowel movement. It turns out that constipation is more than that. It can also mean hard, dry stool. It can mean straining to pass your stool. The reason it’s important to be on the same page about what constipation means is that the answer to the question determines what they give you as preparation to cleanse your colon. People who are not constipated get one version of the bowel prep and people who are constipated get another version. You might think that it would be self-evident who is and who is not constipated, but if you don’t know the full definition of the word, you might not get what you need for bowel prep and then have to do it all over again. Clarity counts.
  • More detail could be shared about how long it takes to get back to normal. I was lucky, the clinic nurse answered my questions about that because when we were talking about scheduling, I shared my concern about enjoying Italy and she said that it can take a couple of weeks for things to completely settle down. If I hadn’t asked, that kind of detail wasn’t shared as part of the orientation. They tell you what to stop eating a week out (seeds, nuts etc.), a day out (milk products) etc., but there is no info in the brochures they give you about post-procedure recovery time. Fair enough, everyone’s system is different, but a heads up that you can expect these things to happen would be nice. Something other than the sheet of paper they hand you that warns you about blood or black, tarry stool. 😉
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The best way out is through

Yesterday I got the news that I have to get a colonoscopy. Ugh. My GP sent me for a routine colon screening test – the FIT. It was almost an after-thought, at the end of my annual physical. Oh, he said, we should do this, too – now it’s part of the cancer agency screening program, just like a mammogram.

I had no symptoms, it was just a good idea to get it checked out. So I picked up the kit, followed the instructions the next morning, dropped off the sample at the lab that afternoon and forgot about it.

Two days later I got a call from my doctor. It’s never good news when your doctor’s office calls. The test was positive. He was quick to assure me that doesn’t mean I have colon cancer. It just meant the test found blood in my stool. Which could be a hemorrhoid, an ulcer, a polyp – lots of things that are not cancer.

Having just been through breast cancer and making it through my year of firsts with flying colours, this is a disappointment. That niggling fear that cancer is in you somewhere despite the chemo and radiation is never far from your thoughts. Mostly it lies dormant – but a call from your doctor’s office brings it front an centre pretty quick.

I’m waiting for the cancer agency to call with a scheduled date. As before, during my breast cancer treatments, it’s the waiting that is the hardest. They’ve assured me that 94% of all FIT tests that are positive are not cancer. Blood does not mean cancer. And, as friends who have been through it tell me, your colon is squeaky clean after (one joked that you feel really skinny).

This sucks. Not happy. But the best way out is through.

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The Firsts – Emotional Soup

I am officially through my year of first anniversaries. My how time flies. What was really interesting about it all was how much more emotional I was looking back. Going through surgery, chemotherapy and radiation, I was so focued on the tasks at hand and getting “the job” done that emotion was not really a factor. Oh, there were some tears, and a few days of fear at the beginning. But once you’re “in it”, it was all about staying positive and managing the mulitple moving parts.

When I mentioned that I’d made it through all the firsts, someone asked me how it felt. I explained that it had been a more emotional journey than how it felt actually going through it, which, even to my ears, sounded weird. But when they said “what emotions”, I was at a loss for a moment. It was a good question.

Emotional soup is the best way to describe it. Or maybe stew. It was like all the emotions crowded into one pot and then burst through. Relief, pride (I made it!), fear, frustration, anxiety, grief, joy (I made it!). Everything, all at once. Not every time I looked back. But the “big moments” – anniversary of first chemo, for example.

Like all good soups and stews, they blended and became more flavourful with age, after they’d had time to sit and infuse. It’s hard to pick them apart now, they are so much a part of my past year as a bundle.

And the emotional soup came mostly without tears. (Although there were some on the last chemo anniversary.) It has been more reflective, a catharsis for sure, but also a curiosity and an embracing. It’s like my mind and heart can now process the emotions, bring them out into the open and … I was going to say acknowledge, but that’s not the right word. Maybe it’s “live” with them.

So here’s to the Firsts – and the 10ths and the 20ths and the 30ths …

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An Open Letter of Thanks to the BC Cancer Agency

It’s Thanksgiving Day here in Canada. Traditionally, our family goes around the table and says what we are thankful for before we have our Thanksgiving feast. In addition to having a wonderful life, I’m grateful every day for the care and expertise and compassion given to me and thousands of other cancer patients in British Columbia. Today seems like a perfect opportunity to express that more broadly.

To radiologists who first saw something suspicious, and ordered a biopsy – thank you! It’s hard to tell someone there’s something not right on the screen in front of you, and to a person you were amazingly compassionate.

Strange as it may seem, I am deeply grateful to the BC Cancer Agency pathologists who not only diagnosed my cancer, but also saw the tiny, infintisimal cell that was hanging outside of a lymph node that could have gotten into my lymph system and led to metastasis if left unseen. It meant I had to have chemo, not so great. But it also means I’m alive today because of their vigilence. Thank you.

Here’s to the chemotherapy nurses who were so very caring at every chemo treatment. They eased my fears, respected my concerns, shared their tips on how to manage all of the nasty side effects and, often, made me laugh. They watched me carefully during each infusion, and made sure I was ok, not just physically but mentally. They are special people. Thank you!

And here’s to the booking clerks and unit clerks and all the behind the scenes people who worked tirelessly to make sure that my treatment appointments and care schedules all got booked. They always had a smile at check-in, or a friendly voice at the other end of the phone. When things didn’t quite match, or a last minute change had to be made, they did it on the spot without complaint. I know this is an immense juggling act, and I’m grateful for their dedication. Thank you.

The surgical team who looked after me at the beginning of my journey was exceptional. The pre-op team are specialists in putting you at ease. The OR nurses held my hand right through falling asleep – thank you! They were smart and funny, and incredibly compassionate. The aenesthetist was hilarious, and made me laugh out loud – and that’s saying something when you’re lying there waiting for the team to cut the cancer out of you. He was a special person, and I’m especially grateful for his expertise in not only keeping me asleep and alive during the operation, but making sure the formula he used did not make me nauseous when I woke up. (Make that grateful with a capital G.) And the post-op nurse who made sure I came out of my aenesthetic fog well, and got me ready to discharge (and warned me about the blue pee) – what a treat she was! My incredibly talented surgeon – who delayed her vacation by one day so she could do my surgery – ensured that the tumour was removed, the margins clean and my wounds stitched so perfectly they healed without issue. The care given me by this talented team was exceptional – thank you!

To the radiology team who gave me my daily zaps – thank you for your dedication to precision and your unfailing compassion. Every day you aligned the machine to the exact angles and doses. And you always asked how I was, what my day was like, and put me at ease. You made lying alone in that lead-lined room with a massive machine a little less scary, and I’m grateful.

My radiation oncologist deserves a special thanks, not only for his skill and professionalism, but also for his patience as I struggled to make life-impacting decisions about the course of my treatment. They were big decisions, and he took the time to carefully walk through the options with me, not once but several times. I’m deeply grateful for his caring approach to help me figure out what I wanted to do. Thank you!

I’ve saved the best for last. My medical oncologist is a saint. Her skill, wisdom and careful explanations of my options and what lay ahead are the reason I am alive today. Grateful doesn’t begin to cover it. She had my back every step of the way. Like my radiation oncologist, she has endless patience. She carefully listened to all my concerns, and walked through everything step by step in language I could understand. She has that unique blend of compassion and firmness – caring and empathy for the times I needed support, and no hesitation to put her foot down on the no side when necessary. Thank you seems inadequate to express how grateful I am.

It takes a village, they say. My village totally rocks. Thank you to the incredible team at the BC Cancer Agency!

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I’ve spent a lot of time looking back these past couple of months. My series of first anniversaries are well underway. Finding out chemo was a for sure instead of a maybe. Starting chemo. Losing my hair. These are not things I ever wanted to think about again. Too many dark moments.

A year ago, I was half way through chemotherapy. By this point I was bald. I had a closet full of hats and scarves and had figured out how to manage most of the side effects. Hard to believe it’s been a year.

I have to say that it’s not that much fun looking back, unsurprisingly. When you’re going through it, you are focused on the outcome, on being positive, on channeling energy to the fight. The emotional journey of looking back is like a roller coaster – highs of being thrilled to have made it through happy and healthy, and lows revisiting the fear and mental toughness that it took to get through. It is draining. I don’t want to spend a lot of time “there”, but I also don’t want to ignore it, either.

It’s been a good year, in every way. My recovery is on track. I’m feeling better. My energy is good. I finally lost the pounds and puffiness the side-effect managing steroids put on! I feel less and less like a cancer patient and more and more like the old me. My body is doing well.

Last year I was too sick to eat Thanksgiving dinner. One of my scheduled chemo dates was the Thursday before Thanksgiving. This year, I’m ready for stuffing and roast potatoes. And gravy. And pumpkin pie – having just completed sugar-free September with the Canadian Cancer Society.

The best way out is through. I am almost through my firsts.

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Just when you think it’s safe to go back in the water …

I’ve crossed a bunch of first anniversaries over the past six weeks. Getting my diagnosis, MRIs, surgery. A year ago I was just past my surgery and doing very well. I started physio treatments the day after surgery to recover as best I could and – critical to me – ward off lymphedema. I was very concerned that my sentinel node biopsy could cause lymphedema, so worked proactively to do everything within my power to give my traumatized lymph system the best chance possible to recover and function well.

Until April (10 months and counting after surgery), it seemed to have worked. I had no sign of puffy limbs or dysfunctional joints. Then I noticed that my left breast was slightly puffy – my bra left a dent in my skin that lasted for up to three hours after I took it off at the end of the day. At first I wasn’t fussed – I figured it was a bit of a bonus that now my left breast was again the same size as my right! 🙂 My left hand was getting slightly puffy around my thumb – very slight, but it felt like the ‘cording’ tightness I’d experienced during my surgical recovery when the three lymph nodes were removed. The breast dent went away over night and the thumb was normal by morning, the pattern repeating daily.

I mentioned it to my medical oncologist at our check-in meeting in April, and she said to keep an eye on it. Over the next month it didn’t improve, so she took another look. The preliminary diagnosis – radiation-induced chest wall lymphedema. Just when I thought I’d passed all the hurdles, I find one of my worst fears coming true. (Most lymphedema develops in the arm after breast cancer. But, just like my cancer was not common, my chest wall lymphedema is not common.)

I was hopeful that since there were no signs of lymphedema after surgery or during radiation, that was a good sign. Plus, I’d been proactive with physio, diet and exercise to minimize my risk as much as possible. Prevent, prevent, prevent!

They warn you that lymphedema can develop years after treatment ends. And here’s the kicker – there’s very little you can do about it if you get it. Lymphatic massage, compression garments, lymph drainage assistance machines for extreme cases . Really? That’s it?

As more and more cancer patients survive because of early detection and improved treatment options, the challenges of the things they will face post-treatment – like lymphedema – need more research. Our healthcare systems are not currently equipped to robustly support post-treatment patients. And, insufficient research is available on things like lymphedema treatment – or better yet, avoidance – options to help patients make informed decisions about options that are best for them.

With more people living longer after cancer, it’s my belief that our demands from the healthcare system are like chronic disease management patients. We’re not the same as we were before cancer, but we don’t have cancer any more and need proactive programs designed to manage and prevent disease and promote good health. In many ways, it’s a “good” problem to have. After all, it’s only recently that cancer patients lived long enough to have long-term needs after surgery and adjuvant treatment. We’ve come a long way thanks to phenomenal researchers and world-class oncologists at the BC Cancer Agency and elsewhere.

I’m optimistic that my pro-active approach of lymphatic massage therapy, acupuncture (yes, it seems it can help) and strategic application of Kineso tape will spark those lymph systems into their old selves. I’m going to give my struggling, hard working little lymph nodes all the help I can to nudge them back into full working order.

Fingers crossed.

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365 Days – and counting

365 days. 52 weeks. Twelve months. I’ve been thinking about this milestone for a couple of days, and it doesn’t matter how you frame it, it doesn’t get any easier to mark it.

A year ago today, at 4pm, I got the news that I had breast cancer. Invasive Lobular Carcinoma. That little pea-sized lump I felt in the shower turned out to be something, rather than the “it’s probably nothing” my friends all added to the “don’t worry” part of the sentence.

I’m profoundly lucky, grateful and happy to be celebrating this anniversary. I’m alive, doing well and getting amazing care. My body is still repairing itself (as my medical oncologist quite rightfully reminds me when I am overly enthusiastic with my fitness routine and pay the price) and my psyche remains whole and positive despite the assaults it’s weathered these 365 days.

Today is one of those days when looking back reminds me of how far I’ve come. It seems like it’s just the blink of an eye – a month at most – since that fateful day, so much has happened. Biopsies, MRIs, CT scans, surgery, chemotherapy, radiation, medical appointments, lab appointments, hair loss, skin trauma.

That’s a lot of trauma. It was a rapid learning curve (death, as I said to someone recently, is a huge motivator). Together, mind and body figured out how to cope. It was these first three weeks that, looking back on it, were the scariest because of all the unkowns. (The day before chemo started was a close second!) At this point (before surgery and treatment) it’s a waiting game. Once I knew I had cancer, I just wanted to get on with the treatment – ready, fire, aim. Now I know the value of taking those extra steps to accurately define the proper action. Didn’t make it any easier to bear.

Yes, I have come a long way. 365 days. Here’s to the next 11,000. 🙂

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It’s not like there’s going to be a cake or anything …

… said my  best friend when I commented on the fact that today is the first anniversary of “the lump”. A year ago today my doctor referred me for a diagnostic mammogram and ultrasound after examining the lump I’d felt in the shower. 12 months, and so much stuff in between.

I’d been thinking out loud that as the anniversary approached, I didn’t want to get caught up in ‘memory lane’ stuff in a negative, woe is me way. I am focused on my bright, happy, cancer-free future. Looking back on the negative things that changed my life so dramatically was not something I wanted to wallow in. But, as she reminded me, it’s not like we’re baking a cake for this anniversary.

The next few months will be filled with a series of first anniversaries. My biopsy. My diagnosis. My surgery. The start of chemotherapy. The end of chemotherapy – there may be a cake for that one! The start of radiation. The end of radiation. Each one a chance to celebrate how far I’ve come. My growing hair is a daily visual reminder that I am making progress.

headshotNext week I get to celebrate a first that not many of us get to remember in our lives. My first haircut. Yup – I have enough hair to get some trimmed off. Not much – it’s still very precious. But it needs a bit of style applied to it. And, it fulfills a promise I made to the stylist who shaved off all my hair the day after my first round of chemo. It was as traumatic for her as it was for me, and I promised she would get to style my hair after it grew back.

So, as the year of first anniversaries starts, today, as I look forward, I also look back and say thank you to the many people in my life, clinical and otherwise, who gave me the incredible gift of having these anniversaries to celebrate. And, as they say, to many more.


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