When a Bad Hair Day is a Good Thing

My Saturday Boot Camp class starts at 9am. It’s a 10 minute walk to the gym, and since it was cool enough to wear a hat (ok, let’s face it, I don’t have enough hair yet to go out without a hat unless it’s brilliant sunshine and above 10 Celcius) the hat was on before I walked out the door. Off it came when I got to the gym.

And here’s the news – I finally have enough hair to have a bad hair day! Woo Hoo! When the hat came off, it left my hair ‘mussed’. There were two – count ’em, TWO! – tufts of hair out of place. Awesome. Until now, my newly growing hair was neither long enough nor plentiful enough to be disturbed by anything, let alone a hat. Having enough to be askew is a new milestone.

It really has been growing these past two weeks. It seems to come in spurts. I looked at pictures from New Year’s Eve and I am still quite bald – two months after chemo finished. Six weeks later, it’s like a human chia pet up there – about 1 cm long (that’s half an inch) and sprouting all over. When it was growing in, it came in patches – and there were days I despaired of it all growing back. Now, all the bald spots are filling in nicely.

Years ago, when a friend’s two sons were very young, they loved PBJ sandwiches. Their dad told me the secret to the best PBJ – full coverage. That’s crust to crust to crust to crust spread of both the PB and the J. Now I am very happy to report that my hair has full coverage.

Here’s to more bad hair days!

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It’s the little things

It’s 30 days since my last radiation zap – time for a check in. I’m doing mostly ok. I say mostly because chemotherapy is the gift that keeps on giving. Sigh. It’s been three months – 90 days – since my final chemo infusion, and my body is still dealing with side effects. The radiation side effects are, so far, clearing up nicely.

My skin is almost back to normal colour – now it just looks like I got a light suntan on my left breast. I’ve had a couple of days of the predicted ‘radiation fatigue’. It’s like hitting the wall of energy depletion – it’s less like feeling tired and needing a nap, and more like total body energy loss, like you’ve run three marathons in one day and are just done. Fortunately those days were rare, and a good night’s sleep was the cure.

My swim buddy and I are just about to get back in the pool this week. Before my operation and treatments, we’d swim a mile twice a week. It’s been eight months since our last length. To say I am excited to be back at the pool is an understatement. So this is a big milestone – woo hoo!

Another milestone happened this week – I wore a bra for the first time in two months. During radiation they don’t like you to wear a bra because it chafes against your skin. Your skin is very sensitive and can sometimes blister. (I was lucky, mine didn’t blister.) You are strongly encouraged to wear cotton camisoles (which I did) and apply moisturizing lotion liberally (which I did). When your skin has recovered enough to tolerate a bra, that’s a big thing. Of course, the first thing I did at the end of the day when I got home was take it off – just like I did before breast cancer. đŸ˜‰

So, for the most part, I’m doing really well. I’m still working out four days a week, and able to do so with a little more intensity each week. I feel great, and now that my hair is growing back I’m looking less and less like a cancer patient. (My hair is growing back in a different colour and seemingly a different texture – before it was dead straight and now it’s looking a bit wavy. Plus it’s very thick!)

Chemotherapy, though, is still lingering. My eyelashes are still growing, slowly but surely, although on one lid it seems to have a ‘cowlick’ with the lashes splitting in a V – who cares, I’m just glad to have some. And my dentist told me at my check up this week that chemo had stained a few of my teeth, an apparently common occurrence. But the most noticeable side effect is my finger and toe nails.

My nails on four fingers (three on one hand and one on the other) are in various stages of falling off. Same thing with some of my toenails. It’s not painful, but it is unsightly. One of the side effects of Docetaxel is that it can make the fingernail separate from the nail bed. Healthy nails grow in after, but that takes many months.

To combat the possibility of the nail side effects you wear ice gloves to lessen the flow of the poison to your fingers. But I got frost bite on the fingers of my right hand during the second chemo infusion and didn’t wear the gloves for the final two rounds. My nails were fine until late December/early January, and then they started to lift off their beds. Much unhappiness. I thought I’d managed to avoid it (other than the loss of the nail on the worst frostbitten finger), but the effects of chemotherapy linger. This too shall pass. By the time my hair is approaching the same length is was before it all fell out six months ago – about a year from now – my finger and toe nails will all hopefully all be back to normal, too.

All in all, I’m pretty lucky. I feel good, I’m in good spirits and I’m getting stronger every day. Plus – did I mention brand new hair is growing in and I get to go swimming this week!! Woo hoo!

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Courage

I may have mentioned that my new definition of courage is every chemotherapy patient who shows up for their subsequent rounds of chemo. For the first round, you don’t know what will happen and how your body will react. You have the literature and the ‘what to expect’ lecture, but until you go through it, you don’t know what’s specific for you. After the first round, you know exactly what to expect. Showing up for future rounds when you know how shitty it’s going to be, that’s the definition of courage.

Now that I’m through the primary rounds of treatment – chemotherapy and radiation complete, I’m on to the endocrine adjuvant round of treatment. For me, it will be a daily pill for the next five years – something called an aromatase inhibitor (Letrozole). I just read the list of possible side effects, and they ain’t pretty.

The biggie is possible bone density loss, or osteoporosis. This could set in over time, so they’ll be doing regular bone density scans to make sure my bones stay healthy. I had my first scan a couple of months ago during chemo, and my bones are spectacularly health – yay! Here’s hoping they stay that way.

The other possible side effects – and the list is long – are the things that make me more nervous. You’d think the bone loss would be the big one, but that one we can deal with effectively through things like calcium supplements, weight-bearing exercise (which I already do – it’s why my bones are in such good shape now), and, if all else fails, something called a biphosphonate can be prescribed (although I really don’t want to take any more drugs).

No, it’s the dizziness, edema (fluid retention), constipation, fatigue, nausea, musculoskeletal pain, and headaches that can occur that have me saying, hmmmm – will I do this? These are all “common” side effects. The possible osteoporosis I knew about. The rest of these I just discovered when I researched the drug.

I will have a LOT of questions for my medical oncologist this week. And I may be revising my definition of courage to include all breast cancer patients on long term endocrine therapy drugs. When you know what’s gonna happen, and you show up anyway.

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Shifting Gears – Treatment Mode to Recovery Mode

It’s almost two weeks since my final radiation zap. My skin looks less and less like a severe sunburn and more like I’ve spent a day in the sun but forgot to replenish my sunscreen. Pink, rather than an angry red.

As instructed, I still treat the skin the same as if I was getting radiation daily. Moisturizing lotion several times a day, plus no rubbing the skin with towels or any other abrasive material. I’ve also been drinking lots of water to stay hydrated. I was very lucky that I never got the dreaded itchy skin – which would have meant using the prescription corticosteroid cream. That cream thins the skin, so it’s a last resort. Apparently 90% of radiation patients get the itches, so I consider myself lucky that I have managed to avoid it. The skin is still quite sensitive, and it’s a bit tighter, so movement is slightly restricted. But, overall, I’m optimistic it will be back to normal within a couple of weeks.

Normal. Now there’s a concept that hasn’t been a daily part of my life for a few months. So much of 2015 was focused on things that were far from normal. Admittedly, I’ll be building a new normal going forward. I’m grateful to my gifted team of cancer specialists at the BC Cancer Agency for giving me the opportunity to do so. I’m looking forward to defining my new world. Running towards health, rather than running away from cancer.

Now I get to focus on recovery. I meet my medical oncologist this week to see what that path looks like. One guaranteed component is an aromatse inhibitor drug called Letrozole. Taking this drug daily for the next five years will help block estrogen-based tumours from forming, reducing my risk of recurrence by over 40%. It comes with its own set of side effects, so I’ll be discussing the benefits vs side effects of this drug with my oncologist.

Other things will likely include learning which foods have estrogen hormones – things like soy, flaxseed, tofu, black cohosh, milk thistle, dong quai, evening primrose and others – and making sure they are not in my diet. Alcohol is likely on the no go list, too, as an increasing number of studies show it is a cancer contributor for breast cancer patients.

We’ll see. All things in moderation. Some things – like soy – not at all. Onwards towards health!

ps – I just finished reading Furiously Happy. Loved this book! I gave it to a friend in early December for her birthday, and was so entranced by the dust jacket I got a copy for myself. I’d never heard of Jenny Lawson or her first book. It was only because the book was on a display near the front of the book store with a very weird cover that I saw it and bought it for my friend. I loved it. Birthday friend not so much. I found it hilarious. Birthday friend not so much.

This description from the dust jacket is what made me buy it, first as a gift and then for myself. Did I mention I loved it?

“Some people might think that being ‘furiously happy’ is just an excuse to be stupid and irresponsible and invite a herd of kangaroos over to your house without telling your husband first because you suspect he would say no since he’s never particularly liked kangaroos. And that would be ridiculous because no one would invite a herd of kangaroos into their house. Two is the limit. I speak from personal experience. My husband says that none is the new limit. I say he should have been clearer about that before I rented all those kangaroos.

“Most of my favorite people are dangerously fucked-up but you’d never guess because we’ve learned to bare it so honestly that it becomes the new normal. Like John Hughes wrote in The Breakfast Club, ‘We’re all pretty bizarre. Some of us are just better at hiding it.’ Except go back and cross out the word ‘hiding.'”

Furiously Happy is about “taking those moments when things are fine and making them amazing, because those moments are what make us who we are, and they’re the same moments we take into battle with us when our brains declare war on our very existence. It’s the difference between “surviving life” and “living life”.

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It’s Been Nice Knowing You 2015 – Don’t Let the Door Hit You on the Way Out

It’s the last day of 2015. Helluva year. Twelve months ago, fighting cancer was certainly not on my radar screen. Now that I’ve finished my radiation therapy as of yesterday, and chemotherapy is two months behind me, I am facing the last few hours of the year cancer-free, treatment completed and ready to get back to being me. Yippee!

It’s not often you get to hit the reset button on life and get a complete do over. My hair is growing back, and it might be a different texture and different colour (it’s a mystery until the pigments grow back). My organs are recovering and regenerating after the toxic assault of chemotherapy. By the time it’s all finished, I’ll practically be a brand new person. Not many of us get to say that, and I am profoundly grateful for the chance to do so.

Much – but not all – of my focus and energy for the past six months has been directed at fighting cancer. Now that I am finished my treatments, my treatment team has warned me that many patients experience a feeling of depression as they adjust from focusing on the fight to ‘what do I do now’. I can see how that could happen – getting through treatment takes enormous focus and commitment. It is in many ways more of a mental than a physical challenge. Staying positive and channeling your energy towards recovery takes tremendous effort. When that laser focus is gone, you’re left with a feeling of loss.

Cancer was, for obvious reasons, a big part of my life this last half of the year. But it was not the only focus I had. I chose to continue working so that I would not be solely thinking about and focusing on cancer the whole time. I also knew that by continuing to contribute to the world of healthcare through my role in user experience, I had a chance to help foster positive change from the inside out – and that was (and remains) a strong motivator every day.

I was very fortunate to have had many more positive experiences than negative ones during my cancer journey so far. My body figured out how to cope with chemotherapy and radiation and their side effects. I got to meet wonderful people who continue to be a part of my life. I was buoyed by a network of love and support that I never knew I had. Strength was found in unusual places at times when I didn’t know I had anything left to give. And, I learned to be comfortable with vulnerability. That’s a huge lesson for a control freak. Letting go of being in control, and putting faith and trust in those around you – beyond scary.

So yes, I am glad to see the end of 2015. And at the same time, despite all the shitty things that were a part of the second half of this year, I am grateful for all of the good things that came along for the ride. They far outweighed the bad.

Happy New Year.

Anusara Invocation (translation & meaning here)

Om Namah Shivaya Gurave

Saccidananda Murtaye

Nisprapancaya Shantaya

Niralambaya Tejase

Ohm

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Everything’s Coming Up Hair Sprouts All Over!!!!!

It’s the little things in life, they say. And in cancer treatment recovery that is certainly true.

My eyelashes are FINALLY growing back. I have tiny little sprouts of eyelashes growing back on both my upper and lower lids on both eyes. Yay! You need a magnifying mirror to see them, but they are there, and each day they get a tiny bit longer.

Last week a whole section of my right eyebrow fell out. Gone, just like that. Two months after my last chemo treatment, and now my eyebrows started to fall out. Chemo is the gift that keeps on giving. Sigh. BUT, it turns out that it was the start of my new eyebrows pushing the old dead stuff out of the way. Yay! For the first time in almost five months I actually plucked an eyebrow. I will never take that previously resented task for granted again. Having an eyebrow to pluck into shape is such a gift.

And the hair on my head is like a veritable forest. The new hair is so very soft, it’s like petting the finest cashmere goat that’s just been cleaned and combed. It’s been sprouting in patches, but over the past week it’s become quite thick – almost enough to keep my head warm without a hat. Almost. The new stuff is all white so far (the pigmentation was destroyed by chemo), but it should get some colour over the next six months or so as the pigmentation grows back. And we’ll see what texture I get – straight or curly. It is itchy all over as it grows back – and I don’t mind one little bit.

A friend of mine once commented on the radically new haircut of a guy she knew – that it is the best visual indicator of a life change. (She believes guys change their haircut at major life decision points.) It’s an interesting theory. My new haircut – while not a choice – is certainly an indicator of a monumental life change. I’m not sure what I’m going to do with it yet, whether I’ll grow it back long like it was before chemotherapy, or if I’ll keep it short and sassy for a while. A lot will depend on what type of hair I get – curly or straight. It will be nice to have enough hair to have options. đŸ™‚

It is the little things in life that make a difference. My sprouting eyelashes are currently rocking my world.

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Two More Zaps to Go

Today is my penultimate radiation zap. 18 down, two to go. One this afternoon at 4pm, and my final zap at 9:30 am tomorrow. The end of my cancer treatment is less than 24 hours away.

It’s been a helluva seven months. From my first biopsy on June 2 to my final radiation zap on December 30, there’s been a lot of treatment and recovery. Now, the end is in sight.

Just like Rudolph’s shiny nose, my breast is now sunburn red, as predicted. And while I can’t say that it ‘glows’, it is sensitive. So far I’ve been able to avoid the dreaded itchiness (touch wood), so have not yet had to use the prescription hydrocortisone cream (the radiation therapists warn you to not use it if you don’t have to as it thins your skin). For me, using Aveeno moisture lotion several times a day has maintained the moisture in my skin and kept it unruptured. Fingers crossed it continues to do so.

I found this very helpful – and accurate – pictorial overview of the whole radiation oncology process. The description of how the tattoos are determined and applied, how the treatment is planned, and how radiation is given is exactly what I experienced.

For the past week or so, I’ve had tiny little water blisters appear where the radiation beam enters. They don’t itch or hurt. But, following instructions, I’ve carefully applied Polysporin to make sure they don’t get infected. The last two or three zaps have also been accompanied by minute ‘prickly’ feelings as the beam enters my skin. It’s as if a pin cushion was pressed against your skin very lightly. It lasts just a fraction of a second.

Two more to go. Not that I’m counting.

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Radiation – Zaps with a Purpose

I’m half way through my course of radiation treatments. As predicted, my breast is pink, as if I’d been in the sun all day and have a light sun burn.

Radiation is even more of a mind game than chemo. At least with chemotherapy you are surrounded by fellow patients and chemotherapy nurses. Not so at radiation.

You are alone in this big, cold room with a big machine that shoots killer rays at your chest. After the techs set you up on the table, they leave the room before they turn the machine on as they don’t want to be exposed to the rays. (Think of the last time you had an x-ray at the doctor’s or dentist – the person administering the x-ray leaves the room.)  It’s a daily reminder that this treatment that is killing any nasty cancer cells that might be hanging around after chemo can also be lethal in cumulative quantities. It’s sobering.

The process of setting you up before the zap is very reassuring. There are always two radiation therapists who verify the alignment and calibrations of the set up for each session. They call out numbers and check laser beams that align with the tattoos. Rulers measure distances in millimetres and Sharpie markers are used to put verification dots in the planes for entry and exit points. Measurements are verified twice, and then another time before they leave the room.

A small box is taped to the centre of your chest. It has motion sensors similar to those used on athletes by video game makers when they are tracking sports motions and actions by professional players that are then transformed via CGI into very realistic games. When you breathe in to hold your breath, the box rises, and its motion is tracked on the computer screen. It’s carefully monitored to ensure it stays within the ‘safe zone’ box (i.e. you’re not letting out your breath), and they tell you to breathe in a bit or let out breath if you get out of the zone.

The zaps last about 20 seconds. This massive machine directs the beam through your breast from one side, then rotates 180 degrees and then shoots the beam in through the other side. It is loud. You can’t see it. You can sort of feel it. Occasionally I get little prickly feelings on the surface of the skin. The entire experience – from the time I show up, change, get my zap, put my clothes back on and head out – takes about 20 minutes.

There seemed to be more women than men at chemotherapy. At radiation, the waiting area is almost equally men and women. So far, I have been the youngest person in the room, by at least a decade. The radiation waiting room is much nicer with more amenities than the chemo waiting room. There are TVs, books to read, puzzles and other distractions. Maybe they put all that stuff there because the room is so cold it’s almost like a meat locker. As you head into the radiation zapping room, the therapists offer you a warmed blanket to drape over you while you’re on the table. I’ve left a standing order.

Radiation is daily, Monday to Friday. I’ll be finished by December 30, so I will start the new year cancer-free and all treatments complete. It’s a great start to a new year.

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Marks of Distinction – Radiation Tattoos

I got my first tattoos. Two tiny little black dots, about the size of a pin head. Doesn’t seem like much. But, as life-changing tattoos go, these two little marks are the motherlode of significance.

These two tiny little dots act as anchoring calibration points for the radiation machine that needs to align on exactly the same plane every time when it shoots life-saving beams through my breast and former tumour site. The process to get those tattoos is fascinating.

Every radiation treatment program is very carefully planned out. Based on your tumour type and pathology reports, the radiation oncologist determines the type, intensity and length of your radiation plan. Together with physicists and radiation therapists, the oncologist carefully calibrates the beam angles to minimize risk to other organs – like your heart and lungs.

For my course of treatment (20 zaps, of which 4 are ‘boosts’ focused only on the former tumour site and the other 16 cover the entire breast), I lay on my back, with my left arm stretched above my head, holding on to a fixed handle to stabilize my arm. My position is carefully planned with the aid of a CT scan. You “assume the position” and they scan you breathing normally and also one holding your breath. For the 16 zaps that cover your entire breast, you hold your breath for 20 seconds. Inflating the lungs raises the chest wall and suppresses the heart, minimizing exposing the heart to harmful radiation rays.

Using the CT scans, the team carefully checks the angles to make sure that the plan matches the position your body is in. Once the plan and your body position match, they put the two little tattoos on the exact spots the radiation machine needs to align with. That way you start from exactly the same spot each and every time.

The tattoos hurt. Not very much – more stinging for a couple of minutes. They are permanent. That part I’m not so happy about. But they are tiny. It is cool, though, how they are going to be used.

The team also put a clear sheet of transparent plastic over my scar and breast and drew a ‘map’ of where they put all the marks, plus where the scar was. A non-digital back-up.

All in all, this ‘simulation’ (that’s what it’s called – they simulate, or practice, your radiation treatment) is a good warm up for the real thing. It’s very reassuring that they go to great lengths to plan every detail to minimize your risks.

I also got a list of approved lotions and soaps. The list of possible side effects from radiation includes extreme skin sensitivity within the area being treated. Your breast will feel – and look – like it’s sunburned. Skin will turn pink, and (like a sunburn) can become very dry and cracked. They encourage you to liberally apply lotion to keep it moisturized – but only those from the approved list. And, you are reminded to not rub your skin – just pat it dry after showers.

The dry run is a success. Tattoos are in place. Lotions from the approved list are purchased. I guess I’m ready. Let the zapping begin.

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Spunk Counts

A friend of mine posted a link to this blog on her Facebook page. Several people have been kind enough to read a few posts and then send me a comment or two. One came from an old friend I haven’t seen in a few years, but we’ve stayed closed through social media. I’ve always valued his perspective and his refreshing honesty.

He shared that, through my blog, he’s now able to understand what a cancer patient goes through during chemo. He said that whenever confronted with a friend (or, in his case, a family member) who was diagnosed with cancer, he, like most people, “fell back on the cliche that [he] had to admit [he] couldn’t imagine what they were going through.” Now, thanks to this blog, he says “I know.”

He wrote: “You must know what a gift you have made for a lot of people. I’m sure others have recorded the minutiae of their experience but yours is funny and honest and accepting in that you put the best face on it. You are quite inspiring. I think spunk counts a lot. You’re my hero.”

Wow – I am honoured. And profoundly glad that this blog is helping people. That’s why I am sharing so completely and honestly. If others can benefit from my experiences and lessons learned, that’s a very good thing.

Chemotherapy sucks. It was an exceedingly unpleasant experience. But – I got through it. The body is amazingly able to cope and adapt. Radiation is less awful (I’ll be writing about it next), but it has its own set of challenges. Attitude really does count. Whether it’s spunk or something else, channeling your positive, don’t take no for an answer resolve is as healing as any of the drugs they pump into you.

So, here’s to spunk and honesty. And friends who remind you that you are making a difference. Thank you!

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