Podcasts that will change your life

The best gift I received during cancer treatment was my iPod (thanks, lovely husband). That thing kept me company through many a long walk, sleepless night, or lonely chemo session. And while the portable devices of many of my fellow cancer warriors blasted inspirational rock anthems or cooed soothing new age instrumentals, mine streamed talk. Talk, talk and more talk.

Podcasts were my anaesthetic - calming a brain clenched by anxiety and fear with, well, I guess nothing more complicated than perspective. Podcasts turned my attention from my own state to the state of the world. I listened to stories of political turmoil and war, profound poverty, childhood disease and economic crisis. I cried at the pain and sadness. But cheered for the inspiring people who battle injustice, advocate for the forgotten and bring hope to the hopeless. I listened to stories of health and wellness, logging advice on walking, nutrition and supplements that may help in my own fight. And, most importantly, I listened to stories of humour. Humour about movies, humour about food, humour about life.
 
Many people will tell you that you will fight cancer the way you live your life. I am someone who cries easily and laughs a lot. No big surprise that my brain would hunger for the two extremes as a way of taking its focus off the unknown.

I still rely on my portable device, an iPhone now (thanks again, lovely husband). Every night it tucks under my pillow waiting for a midnight sleepless spell. Every day it goes on my walks with me, filling my head with things more pleasant to think about than cancer and illness.

So, if you are going through a stressful time, could I recommend some podcasts? Try them out, then go exploring on your own. You will be amazed at what you find, and what you find comfort in.

1. Stand Up, Walk Around, Even for Just 20 Minutes. Fresh Air, NPR. This interview between host Terry Gross and New York Times Phys Ed columnist and author will change the way you think about personal fitness. This was a life changing podcast for me. If you only listen to one podcast today, make it this one.
2. Also from Fresh Air, Just What's Inside Those Breasts?, an interview with writer Florence Williams on her new book Breasts: A Natural and Unnatural History. I don't care if you have had breast cancer or not, you need to listen to this interview.
3. Phil Donahue interviews Tavis Smiley and Cornel West on their work The Rich & the Rest of Us: A Poverty Manifesto. Click here for Part One and here for Part Two. Listening to these interviews will make you wonder why you waste your time watching network news. PBS.
4. This American Life and Retraction. One of the most popular stories shared last year on WBEZ's This American Life was Mike Daisey's story about Foxconn, a Chinese manufacturer of iPads and other Apple products. Turns out, a lot of the original story didn't pass the sniff test, and Daisey admitted to weaving fiction into his facts. In this follow up interview, Ira Glass confronts Daisey about what he did and why. This is riveting stuff.
5. Like to cook? Like to eat? Like to laugh till the stuff you have cooked and eaten is spurting out your nose? Check out any of Spilled Milk's episodes. I guarantee Molly and Matthew will give you 15 minutes of happy.

Now, I have to get going on my walk. Where's my phone?

What the heck?

I have been getting regular exercise like a good little cancer girl, and I am feeling my body starting to change. My muscles are more pronounced in my arms and legs and my clothes fit more loosely. I have more energy and no longer feel like a 90-year-old when I get up out of a chair. And you know what? Yesterday when I passed by a mirror I caught a glimpse of my face and, no joke, I may have actually seen the suggestion of a cheekbone. :-0 I know!

But when I stop and look square into that mirror, do I congratulate myself on a job well done? Hell no. Instead, I focus on the parts that are jiggly. What the heck?

Continuing to focus on the negative is a luxury I can no longer afford. Women have spent far too long dissecting their flaws and listing their faults - red dressed, Special K ladies, I'm talking to you. If there is one thing cancer has taught me it is life is short. It is beyond stupid to waste precious time beating yourself up. If you are making net gains in terms of accomplishment, why would you continue to focus on the work still to do? It's even stupider when you consider we have to keep this up for the long haul. I mean, would you work for an employer if she only ever told you what you were doing wrong? No? Then why the heck would my butt?

These days I am working hard, eating well and moving said butt. And if I want to fight a recurrence, I have to keep doing this every day for a very, very long time. Decades. So the last thing I should be doing is sending myself discouraging messages. Right?

So let's try this, "Good girl! Good me!" And if you're eating well and moving your butt, too, this is for you: "Good girl (or boy)! Good you!"

We are doing one heck of a job!

Regaining power against cancer

I saw my oncologist yesterday for "maintenance." If that isn't what they call it, it should be.

We engaged in the regular checking-in chit chat and, aside from updating him on the status of my meds and general well-being, I told him I was getting 5 hours of exercise a week. "Good!" he said. "But not walking, right? You know, like walking while you're shopping? It has to be VIGOROUS!" Insert visual image of my doctor  pumping his arms with great glee. Vigorous? Let's see. OK - yes, I think it is pretty vigorous, but it is walking. I do the Wii Walk It Out game everyday. It usually takes about an hour (which is actually a total of 7 hours a week) and for the majority of that time I am walking very quickly, pumping my arms and/or flexing my arms with 2 and 3 pound weights. I am breathing hard, my heart rate is elevated and I am sweating (or is that just the hot flashes 'cause I'm going to confess I break a sweat while drinking the occasional glass of red wine I allow myself and I'm pretty sure that doesn't qualify as exercise).

So now I am thinking I need to add in something with a little more, well, vigour. But I cannot get to a gym easily during the day. Dare I float the idea of running? I hate running. Really hate it. I have never been good at it; as an elementary school kid I was near the back of the pack, sneaking in walking and loathing the "natural runners".

A few years ago I was, ironically, an avid Ultimate Frisbee player. That is a sport with a LOT of running in it. Running to catch the disk, running to stop someone else from catching the disk, running away from the amused eyes of the 18-year-olds you are playing against to throw up behind a tree...lots of running.  It was the least fun part of the game for me. But I still remember one magical day when I was running to get away from my defender and I actually accelerated. :-0 The only analogy that comes to mind is I was shooting for going to 10, and instead I went to 11. And it was an incredible feeling. So I guess I am a little nostalgic for that feeling of physical improvement. Improvement and power.

This has been a year and a half of feeling not much but the loss of power, physically, psychologically, emotionally. And in recent weeks, the fear of recurrence has begun to creep around my psyche. The motivation is building and I am starting to seriously look at not just running but a whole range of options to improve my bone strength and physical fitness. I have to start taking my training more seriously. I'm in a fight here.

My new LIFE

Weekend before last, we joined our nephew/godson Finn for birthday tubing at Cypress Mountain. There were 8 of us, two sets of parents, two sets of kids and a whole bunch of strangers, tromping, sliding, laughing, trudging, and doing it again. It was a lot of fun. A lot. So much so that we were organizing the next trip before we were finished the first! Always a good sign.

But all day I was so cold. Cold through the four or five layers of fabric that wicked and fabric that insulated. That is not normal for me. I'm the warm one in my family - my sister is the one always reaching for a fleece and complaining about cold feet. And it drove home some of what my new life is like, post breast cancer. It didn't even occur to me what the problem might be, until my husband reminded me. Oh, right, cancer treatment may have changed the way my body reacts to the environment. It`s just part of my new life.

Another example - every night the hot flashes wake me up and I kick off two layers of covers, desperate to feel something cold, the air, a new section of sheet, against my skin. Then, half an hour later, cold from the sweat once the hot flash has dissipated, I am yanking the covers back over me again. My diet has changed, too. It used to be I didn't think much about having a plateful of chicken wings with blue cheese dip, a big beer and piece of cheesecake for dessert. I mean, I knew that wasn't a great way to eat but I always knew that I could just eat less over the next few days to offset the calorie overload. Now, I think about the nutritional composition of everything I eat with an eye to the impact it may have on tumours in my body. I still eat chicken wings with blue cheese, but I have a handful instead of a platter. Instead of the occasional multi-vitamin and the daily calcium, I take three turmeric pills, two fish oil, two vitamin D, one vitamin C, one calcium, one green tea extract, one tamoxifen, a smattering of aspirin, 2 tablespoons of ground flax seed, 2 tablespoons of wheat germ, half a cup of low fat yogurt, half a cup of green juice, 4 cups of green tea, and a partridge in a pear tree.

Don't even get me started about how my body has changed. The other day my husband said to me, "So, what are we thinking about doing with your hair?" OK - I'll take a moment now to let everyone who knows my husband stop laughing. Yes, Jon is concerned about my hair - in the most lovely and supportive way. But this is a man who, normally, cares not what my hair looks like. During chemo, he actually complimented the way my head looked and remarked on how great it was that I could get out of the house so much faster now that I didn't have to worry about managing that long hair I used to have. (He's a retired tank commander and has fond memories of the ease of life that comes with very short hair.) So, the fact that he is wondering if maybe I shouldn't be getting someone professional to look at my hair gives you an idea about the way the puff ball is taking over my northern hemisphere. Luckily, my face is slimming down but that's all that is. In spite of the hours I am putting in Walking it Out and watching what I eat, I am not losing any weight. At least not quickly enough for me.

OK - enough whinging. I`m really not complaining. If you are not quite as far down the cancer road as I am and you are scared about how you will cope, I'm here to tell you that you just will. You will adapt and you will be fine. Cancer changes your life and you adapt. Here`s how I see life now: I will continue to try to lose weight but I will understand that it may take longer than I want; I will look for better and more bullet-proof hair products to keep my hair closer to my skull while I wait for it to grow another few inches; I will continue to eat better and take my supplements but I will understand that doing so is no longer about having more youthful skin and some abstract, down-the-road, longer life, it is about staying alive; I will be cold and I will be hot and I will simply remember to wear layers and sleep in natural fibres. Because this is my new life. My...new...LIFE.

Two boob or not two boob

People, my oncologist included, keep asking me if I am going to get reconstructive surgery. It's been almost a year since my mastectomy and I still haven't decided. Not that I've been dragging my feet or anything. I wasn't allowed to get it done until recently because we had to let my radiated flesh (ewwww) recover. But I'm fully recovered now and, cheese and crackers, I still haven't decided.

Why is this so difficult? I am profoundly divided. Sorry, I don't mean that literally. Perhaps I should say I am of two minds. Part of me really doesn't want to do it. I can't stand the idea of voluntarily setting myself up for the pain and recovery time. I also can't stand the idea of facing the possible complications that arise once you start dealing with implants. Someone dear to me has had a very bad experience with implants. And her judgment is something I would never question.

But part of me wonders if surgery will help me begin to feel more whole. I don't like what breast cancer has left behind. I don't like the scar. I don't like the new topography. I don't like catching a glimpse of my sunken chest when I look down at a book, at a computer, at my child. And I really hate my breast form - it's not that it's uncomfortable, but it is not part of me and I find myself poking at it and banging my forearm against it as I go about my day. Then there is its, well, substantial presence. You know what, when you drop your bra on the floor, it shouldn't go thud. Not sexy.

People keep trying to help me. One of my nurses said, "Go for it - get the breasts you've always wanted."  My doctor weighed in, "Oh you should do it - you're such a good healer." (At last, something I'm a natural at; it certainly isn't sports or navigation.) Then from someone in my family, delivered with a laugh and a shake of the head, "You can't be serious. You aren't going to do that are you?"  

Let's be real. Since the cancer, I don't see the world the same way. Anything that smacks of vanity feels just..so..wrong. I have learned to accept my puff ball hair and puff ball face because, well, I know they represent a small price to pay for killing my tumour. Eventually my hair will grow and straighten, and my face will slim down. If someone is going to judge me based on my appearance, I get now that it doesn't have to mean anything to me. But what happens when the judge is me? I know I have not accepted what I look like.  I'm 45, and it breaks my heart to think I will feel this way about my body for the rest of my life. And I honestly don't know what will change this feeling other than reconstruction.

Odd isn't it? In a world where 16 year-old girls are begging their parents to buy them new breasts, I have spent more time agonizing over this surgery than the one that took my breast away.

Slings and arrows

From xkcd

On the days when I was my most terrified, when my mind reeled with the fear that I might die and leave my kids without a mom, I prayed to God and asked for strength. I never once asked to be fixed. Even when looking at my own mortality, it felt wrong to ask for anything beyond strength. I mean, I have lived a pretty rich life, full of love and wonderful people. Right now, someone is praying to God for something I have taken for granted. How could I ask for more. But it felt OK to ask for a little help keeping it together, so I could face what I would face in a way that would not scare my kids. So, if I did die, I would have left my kids with happy memories right up to the end.

So I found my courage in my spiritual beliefs and in the knowledge that I had good people praying for me and keeping me in their thoughts. And right now, I am keeping others in my thoughts. Too many others. And so it will continue, as we look for bigger, better and more accurate slings and arrows against this and all the other nasty diseases.

Here's to finding courage wherever we can...and to finding weapons in science.

Happy New Year

Wow - I don't know about you but, for me, it feels absolutely fantastic to say those words. Happy New Year.

Pardon me if I sound a little self-involved, but I have to tell you if there is one thing I have learned it is that the passing of time is forever changed for people who have gone through life threatening illnesses, both for the patients and their loved ones. And still the world continues to turn. Life goes own, people heal, babies are born, people get sick, and people rally around in love to help.

And that is the gift of cancer...the opportunity to bear witness to the gift of compassion.

So in the spirit of this new year, I would like to return the gift and offer up love and appreciation for the people who have helped me this year. 

To my support team, whatever you are doing this fine evening...playing games with friends (hi Diana, Shaun, Tom, Laura, Niamh, Finn, Jack and Ella), celebrating in high style (hi Sandra, Haydn, Robin, Alex, Heather, Colette, Evan and friends), relaxing after a day in the sun (hi Christi, Fred, Owen and Willem), retiring early (hi Mom, Dad, Jim and Lillian, Judy and Carl) or finding your own way to ring in the New Year (hi Rich, Tricia, Zach, Sam, Jen, Sev, Gabriela, Marco, Karen, Parker, Quincy, Kirsten, Simon, Ian, Erik, Louise, Robert, Pat, Merit,Tina, Doug, Jeanne, wonderful cousins (first, second and third), Linda, Ray, Terryn, Pat, Alison, Lisa, Cathryn, Audrey, Pam, Caroline, Nancy, Johanne and all my other friends all over this fine world, Dr. Yun, Dr. Nguyen, Dr. Parsons, Martha, Ann, Brigitte, Nancy, Hershey, Toy, Glenda, Taruna, Roxy, and every other nurse, doctor, technician and health care professional with whom I have had the pleasure of meeting and working), I wish you many, many more days of laughter, sunshine, love and delight. May you find peace, be blessed, and rejoice in the warmth of loving and being loved.

all my best,
Cyn

Doing the work

In the early days of my cancer diagnosis, I had trouble coping with my new reality. Not so unusual, I'm thinking. One of the ways I got through it was to pick and choose what I wanted to learn about and what I would choose to ignore. I always had it in the back of my head that, one day, I would read and learn more about this thing my body was doing.

So some people found it strange that I didn't always remember the name of my particular form of cancer, the names of my drugs or the statistics on survival. OK, that last one shouldn't surprise ANYONE! At the time, that was just fine with me. Knowing this stuff wasn't helping me launch a successful battle. I needed to know where I needed to be, who I was going to see, what I could expect for side effects, and how I should cope with any and all the changes I would be going through. And that worked. For a while.

Now I am in that year out limbo land, seeing my doctors and nurses less and dealing with cancer solo more. And, man, I have to tell you, I feel like an idiot. I feel like I don't know much about what happened this year and even less about what I can expect in the future. So I am taking baby steps towards doing the work of learning more about my cancer so that I can begin to form my own strategies for survival.

First up, depression. I noticed in a number of my intake forms that my health care folks were concerned about whether or not depression during treatment might be an issue for me. Well, I certainly had very blue days. And, I am going through a blue phase right now. So, today, I went online at the National Cancer Institute website to learn more about depression during cancer.

There was lots of really good information. I will include the overview below, but I highly recommend anyone with questions about depression during or after cancer treatment take a look at their coverage of the topic. They discuss diagnosis, treatment, suicide, end of life and palliative issues, and depression in children.

It is officially time to start edumecating myself.

Overview

Depression is a disabling illness that affects about 15% to 25% of cancer patients. It affects men and women with cancer equally. People who face a diagnosis of cancer will experience different levels of stress and emotional upset. Important issues in the life of any person with cancer may include the following:

• Fear of death.
• Interruption of life plans.
• Changes in body image and self-esteem.
• Changes in social role and lifestyle.
• Money and legal concerns.

Everyone who is diagnosed with cancer will react to these issues in different ways and may not experience serious depression or anxiety.
Palliative care begins at diagnosis and continues throughout the patient's cancer care. Patients who are receiving palliative care for cancer during the last 6 months of life may have frequent feelings of depression and anxiety, leading to a much lower quality of life. During this time, patients in palliative care who suffer from depression report being more troubled about their physical symptoms, relationships, and beliefs about life. Depressed terminally ill patients have reported feelings of "being a burden" even when the actual amount of dependence on others is small.
Just as patients need to be evaluated for depression throughout their treatment, so do family caregivers. Caregivers have been found to experience a good deal more anxiety and depression than people who are not caring for patients with cancer. Children are also affected when a parent with cancer develops depression. A study of women with breast cancer showed that children of depressed patients were the most likely to have emotional and behavioral problems themselves.
There are many misconceptions about cancer and how people cope with it, such as the following:

• All people with cancer are depressed.
• Depression in a person with cancer is normal.
• Treatment does not help the depression.
• Everyone with cancer faces suffering and a painful death.

Sadness and grief are normal reactions to the crises faced during cancer, and will be experienced at times by all people. Because sadness is common, it is important to distinguish between normal levels of sadness and depression. An important part of cancer care is the recognition of depression that needs to be treated. Some people may have more trouble adjusting to the diagnosis of cancer than others may. Major depression is not simply sadness or a blue mood. Major depression affects about 25% of patients and has common symptoms that can be diagnosed and treated. Symptoms of depression that are noticed when a patient is diagnosed with cancer may be a sign that the patient had a depression problem before the diagnosis of cancer.
All people will experience reactions of sadness and grief periodically throughout diagnosis, treatment, and survival of cancer. When people find out they have cancer, they often have feelings of disbelief, denial, or despair. They may also experience difficulty sleeping, loss of appetite, anxiety, and a preoccupation with worries about the future. These symptoms and fears usually lessen as a person adjusts to the diagnosis. Signs that a person has adjusted to the diagnosis include an ability to maintain active involvement in daily life activities, and an ability to continue functioning as spouse, parent, employee, or other roles by incorporating treatment into his or her schedule. If the family of a patient diagnosed with cancer is able to express feelings openly and solve problems effectively, both the patient and family members have less depression. Good communication within the family reduces anxiety. A person who cannot adjust to the diagnosis after a long period of time, and who loses interest in usual activities, may be depressed. Mild symptoms of depression can be distressing and may be helped with counseling. Even patients without obvious symptoms of depression may benefit from counseling; however, when symptoms are intense and long-lasting, or when they keep coming back, more intensive treatment is important.

To freak or not to freak? Doing the PBTP dance

One of my ongoing issues is managing the freak. That is, at what point do allow my inner to freak dance about screaming It's back, it's back! and at what point do I tell myself to give the freak a cup of tea and point it at today's episode of Coronation Street (my apologies to anyone who doesn't get that reference - substitute your favourite soap opera for the purposes of the analogy).

To explain...since my mastectomy I have spoken to my medical oncologist about some pain issues I've been experiencing. Occasionally, I have a sensation of a bruise over the area where my breast used to be and on a really fun day that feeling is joined but twinges, tingles and shooting pains in my chest, back and arm pit. He has examined me thoroughly and tried to assuage my fear with reassurance that it was "completely normal" and most likely due to nerve endings repairing themselves as my body tries to put itself back together.

But the fear remains and I have to spend some time managing it. This afternoon, I was skimming the Fall 2010 issue of Abreast and The Rest and I came across a link to a 2008 article on Post Breast Therapy Pain. Eureka! That is what I have.

According to the article's author, Dr. Pippa Hawley FRCPC, Pain and Symptom Management Specialist at the BC Cancer Agency here in Vancouver,

"Women experiencing PBTP often experience numb or tight sensations, along with local tenderness and sometimes shooting pains or tingling sensations. PBTP is usually felt in the armpit and the chest wall, sometimes extending into the breast or chest wall where the breast tissue was removed. Pain can sometimes radiate down the arm or around to the back or shoulder."

YES! YES! YES! THAT it what I have!!!!! Woo hooooooo!

Sorry for the outburst. (happy dance, happy dance) Do continue, Dr. Hawley.
"These abnormal sensations result from the nerves in the area trying to repair themselves and in the process undergo electrical firing. When a nerve fires, signals are transmitted resulting in the person sensing pain as if there might be some injury happening, when there is none. "

The more extensive the surgery, the more likely there will be pain. For most women, the pain will resolve itself within 3 months of surgery, but for us lucky few, it may take years to fade away. But the pain itself has always been very manageable. The problem has been the fear. And I'm not allowed to drink wine to deal with THAT anymore! This article was a great comfort to me. Not that my oncologist's words weren't. But what had been missing for me was the knowledge of just how common this is. Turns out, it is pretty common.

So, what does one do to deal with PBTP? In the weeks immediately following surgery, standard pain killers like acetaminophen and anti-inflammatories like ibuprofen can help. Long term use of anti-inflammatory medications is not recommended, so if the pain endures you should talk to you doctor about other pain medications that might be appropriate for you.

Stretching of the area may increase pain, but it is important to keep the shoulder joint moving so that you don't develop a "frozen" shoulder. To help find some safe and effective exercises to assist with maintaining good mobility, you may be advised to seek help from a physiotherapist. Beyond this, you may want to explore massage or acupuncture which have proven helpful for some women. And, of course, getting enough sleep and avoiding stress will also help you manage pain. Funny how the pain seems so much more manageable for me not that my freak is taking a nap.

As usual, the content of my blog should NEVER be used in place of a FOR REAL conversation with your health care providers. But if you were a little worried, I hope this gives you a bit of comfort to help you manage your freak until you can get in to your doctor! :-)

Radiation

After I had healed from surgery, I was ready for radiation.

Ok - almost ready. I showed up for my first appointment, the one where they run you through the CT scanner to map your body, with my drain still in. Um...turns out they can't map you with a drain inserted in your body. Once the drain comes out of your body, your topography will be different. I wish someone had told us that! We all had a good laugh, though! :-) And Jon and I got to watch the hokey, in-house informational video of what to expect during mapping and treatment.(I say hokey with love!)

A week or so later, the drain was removed (my home care nurse pulled it out - ick), and we returned to the Cancer Agency to get mapped. Going in the CT wasn't as scary as I thought it would be (I'm pretty claustrophobic). The staff working with me were really kind and gentle. I received the first two tattoos of the three I have (I think there's only three). A student got to do one of them and, well, let's just say I forgive her because she had to learn on someone (it's pretty big - think mole rather than freckle). Then we went away for a week or so to let the team map my body.

I received my radiation over 5 1/2 weeks. I understand that in the States, it is not unusual to have radiation for 8 weeks. I don't know if our system here in Canada has a different protocol, if dosages are different, or what. But I can tell you that 5 1/2 weeks was enough for me. After the first two weeks, I was pretty tired. But it was mostly the trip into town that was doing it. I was lucky enough to have great taxi drivers, my dad mostly. Sometimes my father-in-law, sometimes my mother-in-law, sometimes my husband. Half an hour into Vancouver from my home in Richmond, half an hour back. Other times, I took the bus and train. Those days it was about an hour into town and an hour home. When the actual radiation procedure only takes 10 to 15 minutes, it gets a little draining. I used to live a five minute walk from the Vancouver Cancer Agency - boy did I get nostalgic for that tiny commute!

The process of radiation was very simple and not intimidating at all. I arrived, dropped off my appointment card in the basket on the desk, changed out of all my clothes from the waist up, put on a cotton gown and waited to be called in. I was (almost) always offered a warm blanket before being escorted into the dimly lit room by one of a seemingly endless supply of friendly technicians. I positioned myself on the bed and raised my hands over my head to grasp two handles. Then I did nothing. While I made myself as heavy as possible, the technicians rolled and manoeuvred me into position and set the coordinates on the machine. Then they left the room and I got zapped. The radiation is delivered in a series of zaps, I think I got 4 or 5.  After each zap, one of the technicians would come into the room, check to make sure I was still in the right position, and remind me to be still. At every other appointment, a bolus was applied to my chest to help concentrate radiation on my skin so that it too was treated. A bolus looks and feels sort of like a heavy sheet of bubble wrap. When the day's treatment was over, I would thank the technicians get changed and be on my way. Easy!

Once a week, I was seen by a radiation oncologist, either the one who was managing my care or the one that was on shift. Mostly, they were checking to ensure my skin was holding up. After about two weeks, I was pink. By the third week, I was starting to look quite raw.  I was instructed before I began radiation to moisturize several times a day with a good quality water-based moisturizer (they recommended Lubriderm). While I was doing this, my skin was still degrading quickly. So I was given a prescription for hydrocortisone cream to apply daily as well. I am sure it helped but by the end of treatment I was a mess - and it continued to get worse for about a week. I was peeling like I had had a very bad sunburn, but the skin peeling off looked almost black. The area hurt to touch and wearing clothes was unpleasant. But, bit by bit it improved and by the time I went in for my follow up a month later, my radiation oncologist was very surprised by how well my skin had bounced back.

One last word - the people who looked after me at the BC Cancer Agency were remarkable. To a person, they were warm, friendly, gentle and respectful. They remembered what I was doing over the weekends and kept track of my boys' ages and interests. They welcomed my boys into the radiation room so I could dispel some of their fears about my treatment. They cracked jokes and laughed at my lame ones. Most of all, they treated me like I was a person who was getting better rather than a patient who was sick. That difference means the world to someone who is frightened.

My chemo days

It has been a long time since I have addressed my cancer experience, so I thought I would dive back in at chemotherapy. Wee!

Thanks to movies and TV medical dramas, we all have a mental picture of what chemo looks like. When I was told I would be getting chemotherapy for 4 months, my mind immediately went to enduring weeks of being bald, weak, and puking. Already reeling from my cancer diagnosis, I wasn't sure how I would cope. Luckily, chemotherapy treatment has improved for many patients, including me.

Don't make any mistakes, I did lose my hair. Almost all of it. When outlining my treatment schedule, my medical oncologist started with the announcement, "All your hair will fall out." When your doctor starts with that, it sounds particularly ominous. I mean, I might die here and you are starting with hair loss as something to prepare for?! I could not have cared less. Maybe because of that my hair decided, quite miraculously, to hold on. Every time I saw my doctor, he'd look at my hair and smile. "It's going to fall out!" And I'd smile and say, "OK." Then, one day it just gave up. Overnight, my hair started to eject itself from my head. Strands on my jacket, hunks on my pillow, clumps on the shower floor. One memorable day in September while I was walking my kids to school, a whole section of hair I had just tucked behind my ear blew past my face and just kept going. Ick. That night, with the help of my husband and with my boys looking on, we cut, snipped and shaved until I had a mohawk. Out in the world, I had a long brown wig that closely resembled my original hair. At home and wigless, my family was treated to punk mom. But it really did make it harder to keep the wig on when I was in public. So, eventually we went right down to cue ball. I also lost most of my eyebrows and eyelashes, my legs and, well, everywhere else. I felt cold and featureless. I described it to my husband like being pulled too soon from the primordial sludge. So I didn't pause in front of the mirror too often. And I invested in some cozy knitted caps to keep me warm.

I also had days when I was weak and sore. As treatment progressed over weeks and months,  I came to days when I was so cold I had to take to my bed with a hot corn bag and tea. Some days I shook so hard my stomach muscles hurt for days after. But, later I would rally and feel almost normal. My immune system took a hit, and I was vulnerable to every bug that entered my house (did I mention that I have two small, germy boys AND that I was doing chemo during the height of the H1N1 outbreak?). Colds hit me hard and I found it hard to shake off a few chronic coughs. But eventually, I would recover. My joints hurt, a lot. Getting up out of a chair, I felt like I was in my 90's. But, in spite of that, most days I was able to walk for over half an hour at a time. Other days, particularly the cold and rainy ones, I took my mother and father-in law up on their generous offers to walk my son to and from school.  My mother took over laundry detail for the bulk of my treatment, saving me from all the lugging, pulling and hauling involved with doing that for 3 males. And wonderful people brought many of our meals. But I did almost all my other housework.  So, even though the weakness came, it was manageable.

What never came was the thing I feared the most - the vomiting. I was often nauseated. I could get very, very green. On those days, my boys would follow me around the house with great love, offering buckets, towels and cuddles. If it was particularly bad, I would skip meals and choose instead to sip ginger ale and nibble on crackers. Add to the nausea the fact that food usually just tasted downright horrific (see my earlier posting about that!), and eating lost most of its joy for me. But I never vomited. The new steroids did a very good job of easing me through the treatment and allowing me to keep food in and weight on. I can't imaging how weak I would have felt if weight loss ever became an issue.

So, if you are getting ready to do chemo, or know someone who is, I hope this gives you some comfort. While you may look like a cancer patient, you may not always feel like one. I had many, many days of feeling pretty OK. Especially compared to what I thought I was in for. So I guess my advice is, if you and your doctors feel that chemotherapy is the best treatment option for your cancer, you do not need to fear it. The road may be easier for you than you think.

But...if you are doing chemo now and you are experiencing worse side effects than I did, please don't suffer in silence. If talking to your doctor doesn't get you any relief, talk to your nurses. Mine were full of advice for coping with nausea, constipation, sleeplessness, and joint pain. If you still need help, you may want to consider complementary medicine options. If you are in BC, click here for more information. The Canadian Cancer Society also has good information on its site, including descriptions of types of therapies that offer relief for a variety of side effects related to cancer treatment. In the United States, try the National Cancer Institute's website.

Anniversaries

If you have talked to cancer survivors, you will have noticed that anniversaries figure prominently in their stories. Now I too have something to celebrate. The last week of July marked the one year anniversary of the day I stepped out of the shower at camp and noticed that my left breast was, well, pink.


A little background. In the summer, we like to go to United Church camp at Naramata Centre, in the idyllic little village of Naramata, British Columbia on the shores of Okanagan Lake. It was during last year`s trip to camp that I made my momentous discovery. (Ok - it didn't feel momentous at the time. It went more like, Jon, Jon. Look at my breast. No seriously. Does it look pink to you? What is up with that? Was it pink yesterday? Jon,  why would my breast be pink? No, I don't think I slept on it funny. Are you kidding me? I've been sleeping on them since I was 12.)

OK - back to camp. We visit Naramata as a rather big bunch. Typically, there are the four of us, plus Jon's parents, Jim and Lillian, Jon's sister, Diana, and her two kids. The kids spend the mornings with other kids, grouped by grade and led by terribly cool and enthusiastic leaders. The grownups take classes (film for most of us this year, pottery again for Jon). Then the afternoons are spent at the beach, some of us reading, some dozing, some swimming. Depending on the day, some of us may also catch a morning service, attend an evening concert, eat ice cream in the village, go to the farmers' market, wine taste...it`s a full week. :-) The kids charge around, free-range, and absolutely glow from the sun, the singing and the FREEDOM!

This year, we also had the great pleasure to share some of it with Jon's daughter, Deyne. She is working in Penticton this summer and it is a short drive out to Naramata. For the most part, when she was off work, she was with us. And it was really lovely. She got to play with the kids, chat with us and catch us up on her life. She even attended an improvisational singing workshop with Diana and me one night, and we giggled out into the dark, hooting at the humour and marvelling at the magic of it. So, I guess, to sum up, this was a pretty good week at camp. Lots of laughter, lots of talk, lots of thinking.

How does it compare to last year? Last year, I was distracted by a pink breast. It was a naive, "what if" kind of distracted. When we returned from camp, I was plunged immediately into a scary whirlwind of medical appointments and diagnostic procedures. The whirlwind was followed by the devastation of the diagnosis and, ultimately, the work. This year, I was distracted by twinges where my pink breast used to be. But I no longer have the luxury of being naive. So, I acknowledged my concerns, thought about the options and then told myself that, even if it is cancer, I have good doctors who will do everything they can to help me. I do not need to let fear knock me back. I can face the fear and keep on doing the work.

I had been looking forward to going to Naramata, but was a little uneasy about how I would respond to it given last year's experience. My father-in-law, Jim anticipated this and checked in mid-week to see how I was doing. Happily, I could report that I was feeling pretty good. If there is a place on earth where one can feel recharged and centred, it is here. You are surrounded by community. Compassionate, supportive, engaged community. I watched movies about conflict and took part in fascinating conversations about them. I enjoyed my children and enjoyed other parents enjoying theirs. I ate good food, laughed, cried and laughed some more. Ultimately, I shared. I put myself out there and allowed others to do the same. And it is this extension beyond the internal that will get me through the stress of breast cancer. Residing alone inside my brain is the opposite of beating this disease. To begin the rest of my life, and to make it meaningful, I must step outside and join hands with my community.


So how do we celebrate? I think a cup of green tea is in order. :-) But when I pass my anniversary of the diagnosis in a couple of weeks, I am poppin' the bubbly. And the first toast goes to my lovely family and friends. My community.

New boob

Yesterday I went shopping for my new breast. Since my mastectomy, I've just been going around lopsided, in camisoles with shelf bras. Now it's time to get a bra and start looking a little more, um, symmetrical.  So that means a prosthetic breast and a mastectomy bra.

I received excellent service at Bare Basics in Steveston, British Columbia. Arlene was kind, supportive, and full of good, pragmatic, advice. I have friends that buy all their bras there and I know why.  A good bra fitter is the secret to finding a good bra, and a good bra can be a wonderful thing. (Ok - I'll say goodbye now to any guys that may have been reading.)  After trying a few different variations, Arlene found me a very close match amongst their breast forms and helped me pick the bra that would give me the best shape and support. She gave me advice about care and a reminder that I needed to file my insurance claim soon in order to be within the six-month window we have in Canada.

So, I'm home now with my good bra. Good right? Problem is, I don't much love this breast. I had been hoping a pretty bra would help me feel, well, normal. But the bra ain't so pretty and the breast ain't my breast. I must have been pinning a lot of hope on this new purchase, because the let down I felt was immense.Wiith clothes on over this new breast, I look much like I used to. But the process of getting it all on, lining it up, shifting everything around, feeling the dense, heavyness of it, and then taking if off again...the sadness of it hit me so suddenly that my response was physical. This isn't my breast. My breast is gone. Gone. And in its place, under this fleshy, heavy, plastic coated chicken cutlet, I have a long puckered scar, a bump, and some other odd little, well, bulges. And as I'm looking at this altered terrain, this same terrain that I have been washing, moisturizing, and massaging - but visually avoiding - for the past 6 months, I must finally come to terms with it. I am different now, and always will be.

The tears flowed out of me in a way they haven't in months. My husband was great. He said all the right things. He put it all in perspective and said all the things I already knew. I am alive. Different, but alive. And that is worth it. But I suddenly feel so sad, something I haven't allowed myself to feel for a long time. I realized that for the last eleven months I have been trying to get back to something to which there is no getting back. And realistically, I always knew this. But there is nothing like wrestling with a concrete thing to make you realize you are actually wrestling with something intangible, internal.

So instead of trying to fight my way back to what used to be normal, I guess I am going to have to face what my my new normal is. And that may just be the secret behind coping.

Port installation

If you are undergoing long-term chemotherapy like I am, it will be necessary to have a port (or port-a-cath) installed. Chemo drugs are highly toxic and damaging to veins and tissue, so long-term treatment is very hard on these parts of your body. Ports allow health care providers to administer drugs more efficiently by tapping almost directly into the heart - drugs are flushed quickly and efficiently through the circulatory system with little chance for damage to your veins.

A port is a small disc made of plastic or metal roughly the size of a bottle cap that is placed beneath your skin. It is usually implanted in the area just below the collar bone on the side opposite the breast with cancer. A soft thin catheter extends from the port to a large vein near your heart. Nurses will administer your chemotherapy medicines by inserting a needle right into the port and then connecting an IV line to your pouch of drugs. When all your cycles of chemotherapy are done, the port is removed during another short outpatient procedure.Click here to find out more about ports.

My port is a power port. The nurses love my power port. It has three little bumps on it that help them easily locate the injectionable area. But I really wish someone had told me about the bumps soon after the port was inplanted. I didn't notice them until several weeks after I'd had it - at about the time the swelling was starting to go down. But, of course, I didn't occur to me that the bumps were there intentionally. I don't know about other cancer patients, but my experience has been that I no longer give anything the benefit of the doubt. Every itch, twinge, tickle and creak in my body is directly related to SOMETHING VERY VERY BAD!!!

Me: WTF are those bumps? Come feel this! Jon, WTF are these bumps? Is it broken?! Where did they come from? They weren't there yesterday!!!!! WTF? WTF? WTF? WTF? (insert sound of my voice steadily getting higher and more screechy)
Jon: It's probably nothing. Let's ask the doctor. 
 Me: Probably nothing? Probably nothing?! How do you know that? This doesn't feel normal. WTF? Feel them! They weren't here yesterday! They're wiggly. It must be BROKEN! They must be poking out because something has come undone! Oh, god. What happened? How did it break?

...ok - I'll save you the whole freak-out session. But I seriously put the freak in freak out. Turns out, the bumps are a good thing. Who knew? Note to self - stop imagining the worst.

Ports are installed in simple day surgery. Mine was installed in the same exam room in which I had my surgical biopsy - just a wee room with a nurse, a bed and some tools. Warning - I received no sedation. The area was numbed very nicely with a local but I was just as aware for this procedure as I was for the biopsy. Now, it wasn't as stressful - 'cause, like at this point I know that I have cancer so I've already sort of gone to 11 on my stress meter - but it was disconcerting. There was no real pain, but the feeling of my surgeon making a pocket for the port using his thumbs was, um, gross. But get this - when he was finished he smiled and had the nurse confirm how long it had taken (I forget now but it was mere minutes). And....YES...he installed it in record time! Apparently the day before the same procedure had taken much, much longer; the patient was larger and that makes the procedure more challenging. Surgeons like it when they can be in and out fast. And, let's face it, he's a guy so he likes the competition, even if it's against himself.

After he was finished, he gave me some instructions for care and signs to watch for that would indicate infection. Then he smiled :-) and said, "You can manage the pain with Tylenol."  Now according to the link I gave you above, it seems to be standard in the States to manage the pain with a narcotic like Demerol. But you have to love Canada. So, in the days following implantation, I can best describe the pain as being akin to having been punched repeatedly in the same spot on my chest by someone wearing a cocktail ring. Or maybe being pummelled again and again by a seven year old with a mittful of Lego. You get the idea. So, he's right - I was able to manage the pain with Extra-Strength Tylenol - it sort of took the edge off.  And the pain started to subside after a week or so.

The port has been great. I was worried at the beginning that it would be difficult to manage seatbelt or purse straps, but I now no longer even notice it is there. Unless, of course, one of my kids gets overzealous and smacks me on it. (Are you starting to wonder about what goes on in my household yet?) The nurses flush it regularly and it has never given me a moment's pause.

Plus, it gives me that cool cyborg look that I just know is going to be the next big thing. Watch for Lady GaGa to be sporting one in her next music video.

Chemo and your nose

Just a heads up to those of you about to be or in the midst of dealing with chemo, it can wreak havoc on your sense of smell. I had the misfortune of receiving treatment during the H1N1 outbreak last fall. On the one hand, I was happy to get scooted to the front of the line for vaccination because of my weakened immune system. On the other hand,  I was ill-prepared to deal with the smell of most hand sanitizers. It was horrific. The slightest bit of artificial perfume made me want to vomit and then hurt people. One day I walked from room to room pitching the little plastic pump bottles in the garbage, "Get it out of the house...GET IT OUT OF THE HOUSE!!!!!!"  only to later fish them out so we could donate them to a less smelling-impaired household.

So, fair warning, please do not use scented lotions, soaps, body sprays, antiperspirants, dishwashing liquid, detergent or the like. You will thank me.

And since I just mentioned antiperspirant, I thought I'd include a link to the US National Cancer Institute's fact sheet responding to questions about the possible link between use of antiperspirants or deodorants and breast cancer. In short, there is no conclusive evidence of a link and studies have provided conflicting results. Yippee. If you are concerned, speak with your health care providers and consider opting for natural alternatives.

As an aside, I never ever had much of an issue with underarm odor and so was not a daily user of these products. It is very unlikely, in my opinion, that they had any impact on my tumour growth. For my thoughts on that, stayed tuned for my future posting where I take on my probable breast cancer risk factors (moderate alchohol consumption, early menstruation and delaying of baby-making till after 30, I'm looking at you!).

PICC insertion

Because my oncologist was in a hurry to begin my chemo treatments, he ordered the insertion of a PICC (Peripherally Inserted Central Catheter) immediately. Then, given I was going to be receiving infusions for a year (chemo followed by Herceptin), I would have a port surgically implanted at a later date.

A PICC is inserted in the arm opposite the breast with cancer. The tube is inserted in a vein in the arm and advanced through increasingly larger veins until the tip comes to rest near the heart. A tube extends from the underside of the arm, above the elbow, and the chemotherapy drugs are infused through that tube. By infusing the drugs almost directly into the heart, the toxic chemo drugs do not damage the veins in the patient's arm, a significant concern with long term chemotherapy. Instead, they travel immediately to the heart which flushes the drugs into the body quickly with little damage to surrounding veins. In between treatments, the tube is covered by gauze and plastic dressings. Home care nurses monitor the PICC, flushing it freqeuently to ensure the line is clear and monitoring the entry point for signs of infection.

Given the stressful event that was my surgical biopsy, I was worried about the PICC insertion. I needn't have.

The wonderful woman who would be inserting the PICC was gentle, clear and informative. She guided me through the procedure using diagrams, checking often to ensure I understood what would happen. She also outlined aftercare and how I would need to adjust my life to accomodate the PICC. I would not be able to lift anything heavier than 5 pounds, so she ran through ways I would have to adjust how I managed my two young boys.

Then she gave me advice that, at first, shocked me. But in the months since then it is advice that has helped me again and again. It was bad, she said, to hold my breath. Holding my breath would put too much pressure on the PICC tube and could cause problems with it. "When you need to cry, you must cry. Don't hold it in." She locked eyes with me and did not look away until I had nodded. This was the first health care professional who had acknowledged that crying...fear...sadness...would be part of living with cancer. It was a remarkably empowering and moving moment.

Then I put on a gown, was settled on the bed and  met the nurse who would be assisting. And we were off. First up, "What do you think? You look like a Nora Jones person. How would that be?" Are you kidding me? With that, the stereo was turned on, the lights were dimmed and we were underway. It took most of the album to complete the procedure, but it was painless and stressless. Compared to the surgical biopsy, it was like going to the spa. (And for, like, a happy procedure like a scrub or massage rather than a bikini wax.)

The after care was the problem. Because chemotherapy is very hard on your body, you can develop skin sensitivity. This happened to me. Never one to have any skin issues at all, I was dismayed to learn I had developed a sensitivity to plastics and latex. The plastic dressing over my PICC led me to break out in a dreadful rash. The nurses needed to replace the plastic dressing with gauze and paper tape and I needed to be vigilante about the use of any more plastic dressings during any form of treatment. Other than that, the main concern was keeping the dressing dry. I could not shower or bathe without covering the dressing with plastic. Typically, I used (and reused) disposable plastic shirt sleeve protectors, purchased at a local Japanese dollar store, Daiso. Sort of like a gator for your shirt. I also used plastic bags, opened at both ends, along with elastic bands and additional tape to ensure a tight seal.

Living with the PICC was not a huge challenge. But it was inconvenient. It is very hard not to lift your children, laundry or groceries. Pretty significant shifts needed to happen in my home. I could not do yoga, swim or bike ride. Sleeping was really uncomfortable. And the rash made my arm sore. There was a significant concern that the rash could lead to infection. Luckily it did not. But I knew there was no way I could do the entire year's worth of treatment with the PICC.

And luckily I didn't have to.


Up next - port insertion. :-)

Deep breaths

Ok - so after the needle biopsy confirmed the presence of cancer cells in my breast, my surgeon scheduled a surgical biopsy for a few days later. Problem was, he was heading out of town on holiday so a locum would be doing the procedure.

I arrive at the hospital on time and, after getting robed and prepped by the nurses, settle on the bed and wait. After 20 minutes of harried phone calls and under the breath muttering from the nurses, the locum is located and asked politely (told) to get over because his patient is waiting! Turns out it is his first day at the surgical practice and the hospital and he is having trouble getting everything together, parking pass, id etc. to check in at the hospital himself.

Deep breaths.

So finally he gets here, introduces himself to me, shakes my hand as I lie flat on my back (get used to this - you will shake lots of hands while half nude and on your back) and says "How are you, darlin?" before getting started. No sedation, just local freezing and away we go. For the next, I don't know, half hour, I lie there, head turned away, looking at the wall while he slices into my breast and begins removing chunks of the tumour and my skin.

Deep breaths.

After a few moments, the nurse takes my hand, smiles at me and suggests a little music on the stereo. Nurses are really good. So now the procedure continues to the tune of a little light rock from a local station. Now I am not a huge fan of light rock. But I would have listenend to a selection of  Bobby Vinton's greatest hits at that point.

Ok -so the first song up is Can't Fight the Moonlight. Now add in the sporadic interruptions of the surgeon's cell phone ring tone - which I think must have been a sample from the soundtrack to Kung Fu Hustle. I'm not joking. Every five or ten minutes, off goes the phone. Swish...swoosh...aaaah...dada dada dada da da da. Ok - can you put it on vibrate or something, please?

Deep breaths.

Once he gets up close to the tumour he starts talking to the nurse about what he is seeing. He isn't happy. The tumour is big. And many blood vessels are involved. He starts taking pieces and placing them on slides for the pathologist. After he has taken several samples of the tumour, he announces he will be taking samples of the skin. I don't know if this is standard with all surgical biopsies, but it is certainly necessary if Inflammatory Breast Cancer (IBC) is suspected because they are checking for the presence of cancer cells in the skin.

Deep breaths.

Finally he cauterizes the tissue, sutures the incision and finishes me up. He asks the nurse how long it should take for the pathologist to prepare a report. "Ten days or more." He doesn't like that. "Can we put a rush on it?" he asks politely. My heart stops. "We can try," is the response. More smiles for me from both the surgeon and the nurse. And then he is out the door. He is a kind, if distracted, man. But I know he is making an effort to be positive and attentive. She is a pragmatic, empathetic nurse who sees a lot. I feel cared for, but dazed.

I am a little shocked by the abruptness of the procedure, of how aware I was going to be of every little slice, every off hand comment. During the procedure, be prepared to hear your surgeon discussing what he or she is finding with the nurse or with you. Do not be alarmed. Your surgeon's observations are going to help your medical team determine the best way to fight your cancer. Information is good. The more your doctors know, the more effective the fight will be. I really wished someone had warned me that I would be both awake and aware during the procedure (I never asked). I would have been in a better frame of mind to process it all.

The pathologist did rush the report and within the week my oncologist had received it.

Still looking back

Ok - well the results were positive for cancer. A surgical biopsy was scheduled and I was referred to a medical oncologist

That's how it started. Once the cancer was diagnosed I immediately found myself being pulled along in the health care system through appointments, procedures, tests, paperwork...the job of cancer.

It has been terribly frightening at times. Frightening most of all to know that had I not taken an active role in my care, treatment would have been delayed and things may have turned out much, much worse.

Step three - bring someone you love

My husband came to all of my initial appointments and managed all of the facts. Several weeks into treatment, I still literally had no idea what kind of breast cancer I had. I let him hold that. I focused on what I needed to to stay sane and calm for my kids. Being in charge of the data gave my husband the sense that he was in control of something, an important thing for him. And I was able to turn my head off once I left the doctors' offices.

As with all of my experience, this may not be what works for you. But it was a huge gift to me, and him.

I also was able to bring my parents, in-laws and sister to chemo and radiation appointments. I even brought my boys to see the chemo clinic and radiation room. Everyone near me got to see what cancer treatment actually looks like, removing much of the fear and normalizing it. And I wasn't alone. In the chemo clinic, I have seen grandparents share food with grandchildren, friends chat over jigsaw puzzles, and husbands stoicly observe wives' care. I have seen a lot of worried faces, and some resigned ones, but I have also heard a lot of laughter and shared a lot of smiles.

Looking back

I'm not sure how to begin this...but I will anyway. I have learned too much not to share some of this knowledge in the hopes it will help someone, somehow.

I guess the first think I should focus on is what to do if you think there is even a small chance, that you have breast cancer.

Step one - if you are concerned, see your doctor
If you notice anything unusual about one or both of your breasts, go to your doctor. Don't wait. You will be frightened and you may be tempted to wait, to see if the problem will go away on its own. Please don't. The more time you spend wondering if something is wrong, the more frightened you will become. And, take it from me, if you have cancer, you want to start treatment as soon as you can.

This is not what I did. When I found my pink breast, I was in the middle of a holiday with my family. I was not at home. So I monitored it, tried to ignore it, and, once I had wireless service, I googled it. What I found on the Internet scared me. Scared me enough that, when I returned home a week and a half later, I called my doctor.

Step two - take an active role in your treatment
My doctor took one look at my pink breast and said, "That looks like a bug bite." At that point, I had not yet learned that bug bite is a commone misdiagnosis of inflammatory breast cancer (IBC). I had been at the lake, surrounded by bugs. But, as I pointed out to my doctor, I could not find a red spot anywhere on my breast that would have been the point of contact with the bug. When I pressed her for any thoughts on what else it could be, she said emphatically, "Yes, inflammatory breast cancer!" Great.

Here's what I knew about inflammatory breast cancer: it is not the easiest cancer to treat. Now, medicine has made great progress in treating it. But IBC has its own challenges. When I had googled my own breast symptoms, inflammatory breast cancer is what kept coming up. And from what I had read, I was frightened.

So when that is what my doctor announced was the second of my two otions, my blood ran cold.

She sent me for a diagnostic mammogram the following week. That was another treat. I was brought in to the room, images were taken of both my breasts, and I was told to go back and wait in my stall. The technician came and got me, informing me that the radiologist wanted more pictures. My right breast was fine, but my left breast (the pink one) looked suspicious. She indicated that very high on my breast, very far from where it was pink, there was a suspicious area. She pushed and pulled my body, from behind and below, to manoeuvre the chunk of breast near my armpit into the machine. It hurt. Eventually, she was satisfied and got the image. Back to my stall I went. She came and got me again. She needed another one. Back in the machine. Back to the stall. She needed another one. At about the fourth time, I must have been showing my stress, because she looked at me and asked me quietly if I was worried. I said I was. She nodded. Now I was really worried. Eventually, after about 16 images I think, she said the radiologist had what he needed and I could go home. My husband and sons were waiting for me in the waiting room and one look at my face told my husband what I was feeling.

After a few days, my doctor called me in to her office. She showed me one of the mammogram films and pointed out a sunburst of cells up near my armpit. This is good news, she said. They were calcifications, pre-cancers, and very treatable. I would be monitored and have the option of surgery to remove them. But what about my pink breast, I asked. "A red herring, "she replied. "And it's good it happened because it has helped us find these." But she could offer no real explanation for the cause of the discolouration. And this is the moment that fundamentally changed the course of my treatment. "That doesn't explain why my breast is pink. I want a second opinion."

She told me that she would call the surgeon in our city who would be the one I would see if I did have breast cancer and ask him what he thought I should do. The next morning, I had a call from my doctor who was happy to say the surgeon would squeeze me in that day. Off my husband and I went. The first thing the surgeon said to me was, "Ah, the couple who spend too much time on the Internet." Ok, he thinks we are overreacting. I guess that is a good sign. We are wrong to be worried and this probably isn't anything. And then he asked me to disrobe so he could examine me. As soon as he saw my breast, he stopped cracking jokes. He palpated my breast, asked some questions and then performed a needle biopsy. After a few words of advice he told us we should have the results of the biopsy in a few days.

Day one...charting the course

Last year, on a Tuesday morning in July, I looked in the mirror and saw that my breast was pink. And so it began.

Cancer.

Well, I am sure the cancer didn't start then, but my relationship with it did. The fear started then, confirmed with a biopsy a few weeks later. The tumour had been there a while. But no one knew how long. The fear was almost bottomless. In many ways, it still is. But something else started then. An awareness of my place in life, my connection with my children, my husband, my loved ones, my path.

No more bullshit. Different fear. And more time spent in the now.