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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Firsts

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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The Terrible Twos

My new hair is a couple of months old. It’s currently going through its own version of the terrible twos. It has a mind of its own. It goes every which way it wants and ignores any instruction I may try to give it. And it has a different outlook every day.

Pre chemotherapy, my hair was straight. And I mean dead straight. Very fine, and very straight. No amount of curlers or curling iron would make the curl last, so I never bothered. (This picture is a couple of days pre-chemo in August 2015. I’m holdinFullSizeRender-1g the Halloween cauldron I bought as my barf bucket – I figured they were about to pump a witches brew in me I might as well use a witches cauldron for when it comes out.)

My whole life I’d wanted hair with body – a nice little wave that would give it bounce and thickness. I envied people who had curl and waves in their hair. My hair was straight, it wanted to be straight, it had always been straight and it would always be straight.

Until chemotherapy.

They warn you that when your hair grows back in after chemotherapy, it can be a different colour and a different texture. That’s true on both counts in my case.

My new hair is a totally different colour and instead of straight it’s curly. Seemingly with a vengeance.  Now I have the curly, wavey hair I’d always wanted. And I have no idea what to do with it. I am not complaining. I am very happy to have hair. Period. I don’t care what colour or texture it is. But curly hair is a whole new ballgame. Until recently, it was too short to see what was coming – it looked like a short, straight number one buzz cut. But now there’s enough to see that it’s got a mind of its own.

IMG_2376And for now, at least, it’s decided to be curly. Granted, it’s too short at this point to do much with it. But it’s a totally new thing for me – a curly learning curve. I like it, mostly. It’s certainly low maintenance for now – towel dry and go. Because it’s only a couple of months old, the hair is super soft. There’s lots of it, though – much thicker than before. And the cow lick came back.

I waffle between wanting to grow it back to its pre-chemo length and look and going with a new, chic, trendy pixie cut. Depending on how long the whole wave/curl thing lasts, I may have to revise my plans.

For now, it sticks out wherever and however it wants. And I’m fine with that.

 

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There and back again

Last August, when I started chemotherapy, my bike went into hibernation. Most of the time I ride my bike to work, along beautiful, tree-lined dedicated bike routes. It’s about a 15 minute ride to the office, with a couple of reasonable hills along the way. During chemo, I was confident I could get there, but wasn’t sure I’d have the energy to get home on my bike at the end of the day, so most days I drove, and occasionally I walked.

But, chemo and radiation are behind me now. My energy is rebuilding, Spring is here, and the days are getting brighter. I’m back in the pool with my swim buddy, doing a mile twice a week. Plus boot camp, body sculpt and the odd spin class. Riding my bike back and forth to work is the last remaining milestone.

So, yesterday I went down and cleaned up my bike. Wiped off the dust, pumped up the tires, charged up the safety lights and tested the brakes. My swim buddy and I also do boot camp together on Saturday mornings, and we planned to ride to boot camp together. FullSizeRenderI’m happy to say that riding a bike is like riding a bike – it all comes back to you pretty quickly even after eight months off. 🙂 The ride to boot camp was beautiful – and not just because it was a bright, sunny day. My helmet felt different because I have far less hair than I did last July when I last wore it. And the hills were a little tougher than they were last July – that will sort itself out. But the ride home was especially sweet – entirely because I could do it.

There and back again. Treasured for the journey, both physical and mental.

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Embracing Fear

Six months ago, the baseline CT scan I had to ensure there was no sign of tumours anywhere else in my body showed what the radiologist noted as an area of liquid in my left lower lung. The notation said they recommended a follow-up in six months.

Once you’ve had cancer, even though it’s been cut out of you and you’ve completed chemotherapy and radiation to kill any bits of it that might be left behind, there is a lingering seed of worry that I guess will be with me the rest of my life. It’s not something I think about every day, or even every week. But, that CT scan appointment reminder brought that seed front and centre.

My medical oncologist was annoyed by the comment to follow up as she said it wasn’t an unusual thing to find on a scan, especially since the scan was done during chemotherapy. I had not been overly thrilled to have to get a CT scan in the first place. CT scans are useful medical tools, but each one is the equivalent of about 150 X-rays, so they have a significant impact on the body. And now I had to have another – two in six months.

For the two weeks preceding the scan, I did my best to compartmentalize that niggling seed of doubt and not let it occupy too much of my thoughts. This CT scan requires an injection of dye. So on top of showing up for the scan, I also had to psych myself up for yet another needle infusion into my arm. You’d think I’d be used to it by now after chemotherapy and multiple blood draws, but you’d be wrong. I hate needles.

So, as I spent energy denying I was afraid of a) going for the scan and b) what the scan might find, I fairly quickly realized I should just embrace the fear. Talking about it out loud made it less scary. It was still a CT scan, and I still had to get another injection and there was still that infinitesimal possibility that something might show up – but now it was just one more thing I had to get through.

Embracing the fear allowed me to let it go. The best way out is through.

I got the good news this week that the scan was totally clear – no sign of metastasis (or anything else) anywhere. Exhale.

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