Tuesday, May 30, 2006

fuzz, fears and fleece

My hair is growing back. The patches that were completely bald (most of my head) now have a fine covering of fuzz. This makes me feel like I can truly begin to see the light at the end of the tunnel.

I had a second meeting with my radiation oncologist yesterday. He seems nice enough, other than being a bit paternalistic (I am increasingly irritated when medical practitioners speak to me as though I am a child) and also completely flummoxed by the fact that I don't have my husband's last name ("But you are married to him? I suppose it's nothing personal.")

I'll start radiation two weeks to two months after I finish chemotherapy. Some women who undergo mastectomies are spared radiation. However, given the size and agressiveness of my tumours, the oncologist believes that radiation could further reduce my chances of recurrence by as much as ten per cent (doesn't sound like much, but every little bit helps, I guess).

Pros of radiation: Fewer side effects than chemotherapy and much shorter sessions (a half hour at most, compared to the three plus hours of chemo).

Cons of getting zapped: Sessions five days a week for five weeks, likelihood of burns at the radiated sites, fatigue, increased chance of lymphedema, no swimming (this matters only because I will likely be undergoing radiation during the hottest part of the summer), the fact that radiation itself is potentially carcinogenic (I find this more than a little scary).

As we were leaving the hospital yesterday, I said to my spouse (only half-jokingly) that I thought I might skip radiation. It just seems like a lot of bother.

Of course I'll do it, though. I need to feel like I have done everything I can to make sure the cancer never comes back.

In case anyone was wondering, my chemo present to myself this round is several knitting books. I have really been enjoying knitting, a meditative process which results in the creation of something lovely, soft and warm (at least when it works, it does). Two of the books are by Stephanie Pearl-McPhee (Yarn Harlot: the secret life of a knitter and Knitting Rules. I already owned Meditations for Women who Knit too Much). Check out her blog (which I read daily) if you like to knit or just want to laugh: www.yarnharlot.com.

Sunday, May 28, 2006


The pity party is officially over. Life is too short to be spent wallowing and, besides, I have so much for which to be grateful (starting with Exhibits A and B, pictured above).

I went for a long walk in the sun and had the chance to have fun with each of my children today.

I am exhausted tonight but feeling much more relaxed and content.

I can get through this. In fact, I am a whole lot stronger than I thought I was before I knew I had cancer. This is something that will stay with me, I think, long after this struggle is over. What challenge could be tougher than this one?

I will get my life back. When I do, I will be ready for anything.

Saturday, May 27, 2006

not fair

Today's blog has been pre-empted by a bout of self-pity. Regular programming will no doubt resume shortly.

I am feeling pretty bitter today.

I am sick of being in treatment for cancer.

It's the National Capital Race Week End and instead of running (albeit very slowly) in the half-marathon, I need to rest when I take my dog for a walk. It broke my heart to see the participants in the 10K stream down the street near my house today.

I miss my work and I am sick of feeling side-lined.

None of my clothes fit me any more.

I am fed up with being stared at, even when the glances are sympathetic but especially with those who are clearly uncomfortable with my appearance (perhaps because they don't want to believe it could happen to them).

I have lost patience with those who hurriedly change the subject when I acknowledge my cancer as though I am being indiscrete.

I hate looking and feeling like a cancer patient.

I am tired of handling other people's emotions around my breast cancer.

I hate that my family is being made to live through this.

I had a good life before my diagnosis (just six months ago) and I want it back.

Friday, May 26, 2006

in the eye of the beholder

My son D. is a supremely confident child. He goes through life secure in the knowledge that he is interesting, charming and beautiful. People respond to him in kind.

When he was a baby, I would often carry him in a back pack as I did errands. Every time, I would see even the most preoccupied strangers' faces break into smiles, reacting to my engaging child.

He is the centre of any group of children, regardless of age. Teenage friends of his caregiver's children greet us on the street and stop to shake his hand or ask for a hug. He is able to charm the dourest of adults and makes friends wherever he goes.

D. loves to play dress up, picks out his own clothes and cares whether his socks match his shirt (a concept that is foreign to his father and brother). One of his first sentences was, "I'm D. and I'm cute."

I have never, ever thought of myself as beautiful. But D. looks a lot like me. And D. knows he is beautiful. And, so, gradually, D. has taught me to see myself as beautiful, too.

Now, I am bald and bloated. Surgery and chemo have taken their toll on my body. But if I look carefully, I can still see the beauty there. I have a nicely shaped head. There is still a sparkle in my eyes and warmth in my smile. I still have my dimple and the laugh lines around my eyes.

I may never enjoy dancing naked in front of our full length mirror (one of D.'s favourite pastimes). D. has taught me, however, that I have a choice in how I see myself. I am still me. I am still beautiful.

Wednesday, May 24, 2006

"don't die"

We have an-almost-fourteen year old golden retriever, who is nearing the end of her life. This dog has been my friend and my companion through some very hard times (and lots of good ones) and I will be heartbroken when she dies.

So will my kids, especially S., who is very attached to the old dog and who is himself old enough to understand loss and to fear death.

S. hasn't said anything to me about Emma-dog but he talked to his grandmother about her on the week end (he wanted to know how old his Grandma was and was reassured to learn that, in dog years, she is still a spring chicken). He raised the subject again with my spouse yesterday morning ("So, is Emma in the dying phase of life?").

We have all reassured S. that Emma is not suffering and that she has had a long and wonderful life. I think it's a very good sign that S. is working this through with us, instead of keeping his questions and fears to himself.

Yesterday, before he left for school, he threw his arms around my neck and said, "Please don't die."

My mother-in-law and spouse were with me when this happened and agreed that he was just fooling around, not realizing what he was saying until it was out of his mouth. I responded by laughing and telling him that I wasn't going anywhere.

But I wish I could protect my kids from having these thoughts, protect them from loss and death and fear. I guess all parents do. Instead, the best we can do is love unconditionally, listen when we are asked to and let our kids know that it is as normal to fear and to grieve as it is to love.

Our dear old Emma may pass on soon and it will be very hard for my family.

I want my kids to understand, though, that I am doing everything I can to make sure that I am around for a very long time.

Sunday, May 21, 2006

chemo brain...

...is not just in my head.

Finding the right word eludes me. Being consistently coherent is an unrealistic goal. My short term memory is more or less non-existent.

My brain has slowed right down.

I have lost about a hundred consecutive Scrabble games (I play online at www.pixiepit.co.uk/scrabble, a site worth visiting for its amusement value).

I really hope the damage isn't permanent.

Friday, May 19, 2006

worth a pound of cure

I am in a much better mood today, as my energy begins to return. It's also good to get a bit of respite from the rain; there is something very pleasant about sitting outside with the laptop, even under a cloudy sky (see what I mean about the post chemo euphoria? Sitting in my damp backyard - really need to clean up after the dogs - is the best thing I've ever done).

I have cancer prevention on the brain today. A friend sent me two very interesting links: http://www.bcam.qc.ca and www.stopcancer.org.

A couple of months ago, when the Canadian Broadcasting Corporation first aired, "Chasing the Cancer Answer" (on Marketplace: http://www.cbc.ca/consumers/market/files/health/cancer/index.html), I wasn't ready to watch. I think I am moving into a place where the questions raised by journalist and recent cancer patient Wendy Mesley are going to be ones with which I will also be grappling.

Expect to hear lots more from me about this in the coming months.

Thursday, May 18, 2006

what i need

It turns out that sometimes what I need to do is exactly the opposite of what I think I need.

Today, the only thing I wanted to do (and felt I could do) was stay in bed with a pillow covering my head, such was my fatigue and the blackness of my mood. I told my spouse this morning that I was "unfit for human consumption." (I meant to say, "unfit for human company," but my brain is in a chemo induced muddle. However, the statement I did make is pretty accurate, given the toxicity of my chemotherapy regimen.)

I had definitely been fighting a losing battle with the funk I have described in previous posts. I felt so overwhelmed by anxiety and despair last night and this morning, that 'just two more to go' had been wiped out by 'I can't do two more.'

I'm not sure why these first days when I start to improve physically are so much harder than the trough of the first few days after treatment. I know that impatience to feel better has something to do with it. Also, I feel pretty stoned during much of the trough period (this is a good thing) so it is hard to muster up the energy to feel sorry for myself.

Then, when I regain a degree of physical energy, I am so happy to be out in the world that it becomes pretty easy to keep the dark thoughts at bay.

During these in between days, though, it is a struggle not to dwell on the hard parts and the scary questions. How will I get through this? What if the cancer comes back? Why me?

Busy mind. Idle body. Bad combination.

And so my instinct this morning was to go up into the attic, never to emerge. Instead, I called a friend, had a vent and a laugh at the outrageousness of the world. I feel infinitely better.

It would seem that, sometimes, I just need to get out of my own head.

On another note, the results of a study released today provide further evidence that women who over-express the protein HER2 (also called HER2/neu) benefit from more agressive drug treatments (the lovely Red Devil, described in a previous post), while (and a whole host of other factors need to be taken into consideration) women who are HER2 negative may not. As someone who is HER2 positive, I found this oddly satisfying. I think it would have pissed me off (especially today) to find out near the end of treatment that I might have done as well on an easier regimen.

You can get more info on the study at http://www.sunnybrook.ca/news .

Wednesday, May 17, 2006

another list

I need to make a (somewhat random) list of things I know about myself that have nothing to do with breast cancer:

  1. I am the mother of the two most beautiful, sweetest, smartest boys to ever walk the face of the earth.
  2. I am happily married to a real cutie (who will be both mortified and chuffed at being called a 'cutie' in public. What the heck, he's extra cute when he's embarassed). We have been together 15 years and we still make each other laugh.
  3. I am crazy about dogs. I have two biggish beasties with sweet dispositions, who get me out in the world when I don't feel like going and who are the loveliest of companions.
  4. I have put up for many years with a neurotic, malevolent tabby cat to whom I am unreasonably attached.
  5. I knit. My knowledge and interest greatly outstrip my ability but I love it.
  6. Before the cancer, I had become a runner (albeit a very slow one) and I will be one again. Like knitting, I find it meditative and good for the soul (not to mention what it does for my legs). Also like knitting, running doesn't come naturally. It tickles me that two of the things I love best to do are things which do not come easily. That was a big hurdle to overcome and I'm glad I did it.
  7. The first sign that I am starting to lose control over a fast-paced life: I lose things. It usually starts with my keys.
  8. I have a somewhat addictive personality. When I get into something, it can become an obsession.
  9. I am not someone who should own a Blackberry (see above).
  10. I love good coffee (black), good chocolate (dark) and good wine (usually red, but not always).
  11. I love working in the labour movement and have a strong commitment to social justice. My spouse shares these values and I am proud to see my children absorbing them.
  12. I have surrounded myself with a community of chosen family. Never have I been more grateful for this than in the last several months.

Tuesday, May 16, 2006

fighting the funk

Starting to resurface from the most recent round of chemo (no anti-nauseants today). Fighting the funk that seems inevitably to descend when I reach this place (basically, well enough to feel sorry for myself but not to do much else).

To address this, I think it's time to make a list of things for which I feel grateful (not the big picture stuff but why, right, now, today isn't so bad):

  1. Sleep. I got much more of it this round.
  2. My doctors and nurses really ask about my side effects from chemo and seem eager to find the best ways to get through this. This has helped a lot (for example, no weird twitching this time).
  3. I had just enough of my friend B.'s healing soup to get through the last few days. It was the only thing I wanted to eat this round.
  4. While my dear old dog has a terrible sore on her leg, I have a vet who will come to my house to take care of her.
  5. My house is clean, thanks to my mother, and I will not have to spend the whole time the vet is here feeling embarassed.
  6. I only have two more rounds of chemo to go.
  7. I am able to blog.

As I think of others throughout the day, I will update.

I forgot to add the following anecdote to my list of "strange happenings":

During a chemo session a round or two ago, I chatted a bit with the woman whose husband was in the bed beside mine. He has lung cancer and is taking part in a clinical trial involving infusing the patient with chlorophyll. The substance in the iv bag was definitely a very bright green.

A couple of hours later, when the couple got up to leave, I noticed that the man was now green. He had not taken on a greenish tinge. He was green.

Friday, May 12, 2006

hot flashes

They start in the morning but come infrequently until the afternoon. By evening, they plague me in waves, starting up my chest, overwhelming me with heat until I am literally dripping sweat.

I almost took my clothes off at my son's birthday party two nights ago (thus ensuring years of therapy in his future).

I am experiencing what some call "faux menopause." The chemo has shut down my ovaries, my periods have stopped and I am experiencing some spectacular hot flashes.

The night of my son's birthday (when, in my defence, I was under some stress), I also became convinced that my spouse was not being adequately sympathetic, that he just didn't get it, that in fact he was not being nearly supportive enough. And I told him so. Then I remembered that there
are other menopausal symptoms. My poor spouse.

I have two friends who claim that they're respective partners have offered to go out in the middle of the night, in the thick of snowstorms to replace empty menopause-related prescriptions, such is the spousal fear of menopausal mood swings. My friends are both lovely women (and two of my heroes), yet they insist that this is true. Perhaps their spouses would like to form a support group with mine.

I know this is not the worst part of chemo just insult to injury, really.

To my menopausal readers: My respect for you for being able to function in the world while you go through this has increased immeasurably. If you are feeling less than sympathetic towards me consider this: If, as my doctor suggested yesterday, my menstrual cycle is likely to resume in a year or so, I get to go through menopause twice.

Wednesday, May 10, 2006

my big boy

My beautiful firstborn son turned eight years old today. I can't believe it.

He cracks jokes like a teenager but sleeps with a bedful of softoys (all dogs, he is his mother's son).

He hates school yet loves to learn and remembers everything that he takes in.

He can be infuriatingly rude and then behave with heart-melting empathy (he called me from the office of his school the day after my surgery. He needed to check that the nurse was coming and that there was someone there to take care of me).

He is very sensitive but also the funniest person I know.

He has inherited the 'sleep gene' that plagues his father's family. Often awake beyond exhaustion late at night, and impossible to wake in the morning, even when we let his little brother jump on him (Santa, who must not like this child's parents very much, brought S. an alarm clock that sounds like a rooster crowing. While his parents curse, my boy sleeps soundly through the racket).

He is too smart for his own good.

We share a love of coffee shops, surfing the internet and fine bath products.

I love him very, very much and I could not be more proud of him.

Tuesday, May 09, 2006

i buy myself presents

It's true. Prior to each round of chemo, I have bought myself a present.

Now, I know that this is a really frivolous thing to do. I know that buying stuff won't buy me happiness. I also know that I am damn lucky to be able to afford such frivolity (thanks to public health care and a very good job with great benefits). But it really does make it easier to face the awfulness of chemo.

For the first round, I bought an ipod (this was a big ticket item but, in theory, the whole family "shares" it).

For the second round I bought a teapot. I ordered it online. As a replacement for one I had bought in London. I am pleased to say that it survived the flight over and arrived from England in one piece.

I bought two beautiful hats prior to round three, from a local craft fair. They are both fine examples of millinery. Why two? Because I couldn't decide between them (please don't judge me). When I wore the black one (with a big green and red flower) to pick up my older son, he said, "You can't even tell that you're bald."

I have chemo this Thursday. On Monday I bought the most beautiful pair of red sandals (I will try and post pictures, once I can get the technical details sorted). I had this idea in my head of a pair of very comfortable sandals for my longer walks but with a bit of an edge. I found the perfect pair at the first place I looked (at Glebe Trotters on Bank Street in Ottawa. Go see them. The guys who run the place are really nice and know their way around a shoe). They are bright red. I wore them yesterday and two people stopped me on the street to ask where I had bought them. Joy.

On another note entirely, it is now much easier to post comments on this blog. After complaining for days about the fact that would-be commenters (commentators?) were being foiled by all the hoops they had to jump through, I decided to write a note to Blogger and complain. Before doing so, I thought I should double check with the help function. Doh! (as my older son and Homer Simpson would say). I had set things up so that only registered users could comment.

I have changed my settings so that anyone who wishes to do so can now offer their two cents. Let me know if it works.

Monday, May 08, 2006

why i blog

I am not an exhibitionist. I thought twice and three times before some of my more personal posts, especially before discussing my mastectomy.

Writing for me has always been therapeutic but that doesn't explain why I chose to expose myself so publicly.

I am doing this, in part, as way to keep friends and loved ones updated, as well as to help them better understand how I'm feeling and what this experience is like.

I am doing this because some apects of cancer treatment are so bizarre that they must be shared.

I am doing this because our culture sometimes treats breast cancer like some kind of terrible secret
, which in turn makes having cancer seem slightly shameful. Talking openly about my cancer makes people feel less awkward around me, which is much, much easier for me. I have always believed in acknowledging the elephant at the table and while I respect the decision of others to keep their cancer a secret, it's really not the right choice for me. I guess I was pretty much an open book anyway (to mix my metaphors liberally) and don't see why cancer should change that.

I am also writing because people like Margaret Wente (a columnist with the Globe and Mail, one of Canada's "national" newspapers) really piss me off. In a recent column Ms. Wente scoffed at the idea of a cancer epidemic, talked about the cancer bandwagon and said that, of course there is more breast cancer now because there are more older people. She also dismissed the idea of environmental factors and the need for research into prevention.

I want Ms. Wente and others to know that I'm here, 38 years old, with no breast cancer in my family and very few of the risk factors associated with the disease. I really felt that my lump and subsequent diagnosis with stage 2b breast cancer came from out of nowhere. I didn't chose to hop onto this particular bandwagon, nor did the many other women in my circle (including several diagnosed before the age of 40). I don't know if I would use the word 'epidemic' but I do know that our numbers are growing and feel very strongly that 'why' of this must be further explored.

Finally, I am writing because, after my diagnosis, I found a dearth of stories about younger women with breast cancer and I thought that if I appreciate others' stories, then someone might like to read mine.

That's why I blog.

Saturday, May 06, 2006

strange happenings

I love my work and when I'm feeling well, I miss it. It's hard not too feel some sadness and anger at times that life is going on without me (which of course it must).

However, as my friend C., who has been through this, commented the other day, this is a rare time in my life to be an observer, to really notice and think about life - the positive, the difficult and the truly bizarre.

Listed below is a random list of some of the more absurd things I have observed and experienced in the last several weeks:

  1. My insurance company requires a letter from my doctor, including my diagnosis before they will reimburse me for my prosthesis (the prosthethis cost $350 and Medicare pays for $180). "Why is this necessary? Who would buy a prosthetic breast just for fun?" I asked what I thought were rhetorical questions. My spouse replied that it takes all kinds and that you never know what could turn up with a Google search. I don't dare try this.

  2. My anatomy was recently enhanced with a 'portacath', a disk with some tubes attached that are connected directly to a vein that goes to my heart. It was inserted beneath the skin, a couple of inches under my collar bone, on my left side. It makes chemo infinitely easier, as I can now use my arms during the hours I am receiving treatment and no longer experience the burning sensation that I did when chemo was infused into a vein in my arm. Chemo also hardens and shrinks the veins, so the portacath is saving me the trauma of being poked repeatedly as the nurses try to find a vein in my arm. My portacath is a really nifty thing but I do feel that I more closely related to the 'Borg' from Star Trek than I used to be.

  3. Acupuncture is supposed to help with nausea, so I thought I would try it out. I've been seeing a doctor of traditional Chinese medicine who has considerable experience working with cancer patients. He also has a considerable number of eccentricities. For example, the first time I saw him, he greeted me warmly, then handed me a piece of paper stating that, suspecting that someone was spying on him, he'd had a private security company in and they'd found listening devices all over his clinic (I have no idea if he is delusional or if this is true). Since that day, he asks that all his patients communicate with him in writing only -even while we are being treated. When he does talk, the doctor communicates chiefly in song titles: "You are always on my mind," and "I'll be waiting for you."

  4. At my last appointment, my very cool oncologist suggested that smoking dope would be the best thing to alleviate nausea and other side effects from chemo. My mother-in-law responded by couriering me a pot cookie.

  5. I took part in Look Good Feel Better, a free session put on by the cosmetics industry. The idea is that women in treatment will feel better if they can be shown a few tricks to look more like themselves. And you get lots of free stuff (I love getting free stuff). I thought it would be a lift, a bit of light-hearted fun (and so what if I left wearing more makeup than I usually apply in a month). However, the 'team leader' for my session was a martinet, barking out orders like we were in boot camp ('Apply mascara now!' 'Left hand on left eye! Right hand on right eye!'). I spent the whole session frantically trying to catch up (and giggling madly). When the martinet informed us that it was time for 'a moment of silence to remember the fallen', I stopped laughing. I doubt there was a participant in that room who needed to be reminded of the 'fallen.' Or who hasn't had many moments of silence filled with the fear we might join them.

Wednesday, May 03, 2006


I am fundamentally a 'glass is half full' sort of person.

It's not that I am always in a good mood (those closest to me would be sure to tell you otherwise). In fact, I have struggled with depression since my teens, and need to work hard at staying healthy. It's just that if there are two ways to look at a situation, I naturally gravitate to the most positive interpretation.

That's why I can say that during these months of chemotherapy, I feel well half the time.

A clear physical and emotional cycle has emerged after three rounds of chemo. The first couple of days afterwards I feel light-headed and queasy. By the week end (every chemo is on Thursday), I go into the 'trough', which lasts for several days. I feel pretty awful during this period but the symptoms are better managed than during the first round. By early the next week, I emerge from the worst but go into an emotional funk (last week I spent several days exhausted and furious at how different my life is right now from what I expected it would be).

Then I turn the corner.

I went for a walk last Saturday, bubbling over with everything that is good with the world. The sunshine. My beautiful children. My dogs. My eyebrows (thinner, but still there).

I seem to get a week and half of feeling better (the effects of chemo are cumulative, so I know that this period could get shorter, but I know it will come), during which time I am positively euphoric.

I love my family. My neighbourhood. I have the best friends in the world. I am getting the best of medical care. I am happy. The fact that I can't find anything in my cluttered mess of my house only bothers me a tiny bit.

Chemotherapy is very hard and I really, really hate it. I am however, very grateful for this opportunity to experience joy, and to be reminded that, really, I have a very good life.

Monday, May 01, 2006

boob in a box

I went to into my room to get dressed yesterday morning and found my new prosthetic breast sitting on top of its box.

My boys had been playing 'Pirate Treasure Hunt' (although I think it was really an excuse for soon-to-be-eight years old S. to look for hidden birthday presents) and I gather the box on my shelf had been too much for two curious boys to resist.

I immediately went to tell my spouse. Should I talk to S. about his find? Did I think it would be more traumatic if I talked to him or should I just let it go? My husband, who had his hands full baking a cake for my three-year-old's birthday, said in so many words that he didn't think it was a big deal and that, while I could talk to him about it, I really didn't need to worry.

So I decided to wait for the right moment. A couple of hours later, I had the following conversation with my older son:

"Did you take something of mine out of that box on my shelf this morning?"

"Yeah. It was a white, squishy thing. What was that?"

"Um. Well...You know when I had my surgery...it left me flat on one side. This is to make me look the same on both sides."



"So it makes you look normal."



End of conversation. Kids really do take most things in stride.

My prosthethis has provided a real lift to the spirits, is comfortable to wear and makes my clothes fit better. It is really bizarre, though, thinking that I will be putting my breast away in its box every night and taking it out again every morning.