Friday, March 28, 2008

silly soothes the soul

I lost count of the number of times we watched this tonight.

My sister, if she hasn't already seen this, would love it.




Update: It turns out that there's a whole bunch of these on YouTube. The kids and I may have watched them all. These guys are awesome. And hilarious. I just wish I could understand the banter.

Thursday, March 27, 2008

too young too soon

I am grieving the death of an old friend today.

Ron Crawley, many people will miss you very, very much.

Instead of a regular post, I am linking to a post from BlogHer by Catherine Morgan. It's about the environmental causes of breast cancer but the information applies to other cancers as well.

Wednesday, March 26, 2008

all at once

I was planning a post about cancer clusters today but I have decided to put that off until tomorrow.

Instead I will link you once again to Sara, who has left me furious, sad, scared, hopeful. inspired and even amused by a single post.

Cancer is a bitch.

Tuesday, March 25, 2008

before i die

As part of an exercise I did last January, I wrote a list of things that I would like to do before I die.

Don't worry, I'm not being morbid nor have a received any bad news of late. It's an exercise that anybody could do, although it does feel more loaded now than it would have before I was diagnosed with cancer.

I re-read my list today and was surprised by it, even though I only wrote it two months ago.

The list contains things I feel I ought to do and things I fantasize about doing, things that are achievable (and that I will do) and things that probably fall under the category of pipe dream.

This is what I wrote, through stream of consciousness and completely uncensored:

Finish my queen-sized bed spread.

Write a novel.

Organize my house.

Travel with my kids.

Go back to school.

Run a marathon.

Participate in flyball or agility with a dog and my older son.

Get the message out re living long and well with metastatic cancer.

See the midnight sun again.

Go to Australia.

Become a soup-making expert.

Get more writing published.

What would be on your list?

Sunday, March 23, 2008

how aware are you?

This blew me away:


Awareness Test - Watch more free videos

I think I'm going to be very nervous next time I'm on my bike.

Thursday, March 20, 2008

boiling blood

I can't stop thinking about this story.

This should never, ever have happened. And so many medical professionals contributed to the problem.

It makes me furious.

Beverly Green, who is featured in this article (and was on the front page of the Globe and Mail last week end) is 45 years old and dying of liver metastasis. She found out way too late that she should have been given Tamoxifen.

I know that the government review being conducted will not lay criminal responsibility but I would really like to see some heads roll.

Wednesday, March 19, 2008

feeling well. and irony noted.

I had my regular oncologist appointment today.

The thought occurred to me, as I readied myself to go, that I am feeling healthier these days than I did before my diagnosis.

It took cancer to get me to take care of myself.

Tuesday, March 18, 2008

dreams

I have recurring dreams.

And while I don't remember all of my dreams, there are some that stay with me very vividly. I don't believe that all of my dreams have great meaning (and some make so little sense when I wake up that I don't even try to ascribe meaning to them) but sometimes, I really feel that my dreams relay messages from my sub-conscious.

I still occasionally have a dream that I am back in university. It's time to write exams, only I haven't been to class (OK some of this did actually happen in real life). In fact, I had no idea that I had even signed up for that particular course.

It's very stressful.

In a recent version of the dream (and I have had this one more than once), I have had to quit my job and go live with my parents, since I have just found out that I did not complete high school. In this dream, I can't even find the school office to get a copy of the class schedule. As the end of the school year approaches and exams loom, I realize that I have not attended a single math class (I don't even know where the classroom is).

At the most stressful periods of my working life, I found myself back in grade school (it is not fun being the only adult in Grade 4).

When I was pregnant with my first child, I dreamed that I gave birth to a chicken. I was horrified. I knew that I was supposed to love that chicken and I was wracked with guilt that, instead, I was repulsed by it. I was especially terrified at the prospect of breast-feeding the chicken.

Several months later, I dreamed that I gave birth to a golden retriever. I took that as a sign that I was making progress in my mental preparation for motherhood. I still didn't know how I would breastfeed a puppy but at least the creature in the crib was mammalian (and the thought of cuddling with it did not freak me out. I have never really liked birds).

In the year before my cancer diagnosis (my last year of working crazy hours), I dreamed that I had inherited a house. After living in it for some time, I would always discover that the house had another floor to it, one I had not known existed. This attic didn't always look the same but it was always beautifully furnished, dusty and fairly vast. My feeling upon discovering it was always wonder, mixed with a lot of fear and some excitement.

I took that one to mean that there was some aspect of my past that needed exploring. Perhaps I was also telling myself that I was neglecting some part of who I was.

More recently, I have been having a dream that is likely related to the unexplored house. In this one, I am staying at a large hotel. It always looks different and the location and reason for travel also vary. But in every dream, I get locked out of my room and I can't find my keys (this is something that happens to me almost every time I travel. And I lose keys all the time). I spend the rest of the dream wandering the halls, trying to find the front desk or, if I succeed in getting a new key, I can no longer find my room. All the hallways and every floor look exactly the same. Or the numbers have disappeared from the doors. Or I get my key to work in a lock, only to find that door opens to an empty room (or one with someone else in it. I have had this happen in real life, except that in the dream, I am the only one who seems to be bothered).

It's not a panicky dream (like the school ones), just a frustrating one. Perhaps I am just feeling stuck and not sure how to get to where I want to go (and unsure of what the destination should be).

I think dreams can tell us a great deal about ourselves, if we can actually figure them out.

Thoughts? Feel free to psychoanalyze me or share dreams of your own in the commments.

A version of this was cross-posted to Mommybloggers.

Monday, March 17, 2008

a change is as good as a rest



And a rest is as good as a rest, too.

S. and I had a great time in Toronto. I really didn't do a lot of parenting, as S. and Grandma were pretty much inseparable. They saw a lot of movies, ate food that we can't keep in the house (nuts, peanuts and sesame, due to D.'s allergies) and just generally enjoyed each other's company.

S. also discovered bitstrips.
How could a kid who loves comics and the internet resist?

And, as his proud Mama, I have to crow that he created comic strip embedded above, all by himself (yes, I swear he really is nine). "Susan" is a nom de plume (or rather the name of the adult whose account he was using).

And as for me, I slept a fair bit, did a bit (a very little bit after the first couple of days) of writing and spent time with really good friends.

I also did lots of walking. On Saturday, I walked the length of Queen Street from Coxwell to Crawford (and then up, almost to Bloor), about 10km (more than 6 miles). It was a really fun way to see a real cross-section of Toronto life.

I played tourist, too.

If you're ever in Toronto, you really should check out the following:
  • go here, if you are a knitter
  • eat here, if you like good, cheap food and a really relaxed atmosphere
  • hang out here, if you like to take in a bit of history, enjoy artists studios or just like to drink locally brewed beer
  • get take out from here if you like Caribbean food (you can't get good roti in Ottawa).
And there's more. I saved the best part for last. We drove (T. and D. had come to join us) home in record time. And no one puked.

Tuesday, March 11, 2008

lost

When the dust had settled from yesterday’s traumatic train adventure (actually S. had put it all behind him by the time he hit the bathtub at his Grandma’s house. I, on the other hand, am still recovering) and once clothes were washed and boots were scrubbed, I realized that we had not made it off the train without leaving some things behind.

While still on the train, I had put all of the still clean contents of my son’s back-pack into a garbage bag, while putting the things that would need to be washed into another. Somehow my son’s thumb drive and mp3 player did not make the transfer (or perhaps we lost them when the bag fell apart, clattering his belongings all over the floor of the train station. I can’t be sure).

The loss was not noticed until much later. As I write this, we are still hoping to hear from Via Rail that at least the mp3 player has been found. I, am, however, not holding my breath.

At least these lost things are replaceable.

When my son was very young, he had a small stuffed dog. Little Dog (at that stage in his life, he named his toys very prosaically) went everywhere with him. Small enough to fit in the palm of my hand, we lived in fear of losing this toy to which my son was very deeply attached.

Little Dog was lost and then recovered several times. We found him once in a tree outside my son’s day care, another time in the middle of an intersection in front of the airport. Then, one day he was lost for good, having perhaps fallen out of a car on a day full of errands.

Six years later, my son still cannot bear to talk about it.

I understand this. More than once, I have put dolls and stuffed animals on buses so that they could make their way home to children who have left them behind. And once, on vacation, my own parents sent a taxi back to a hotel to recover my beloved stuffed kangaroo (more than thirty years later, ratty old Skippy still resides in my bedroom closet).

But an mp3 player, I console myself, can be replaced.

And some day, I am sure I’ll be ready to take the train with my son again.

Monday, March 10, 2008

and we’re off!

March Break has arrived and I am off to Toronto with my oldest son. As I write this, we are on the train and he is amusing himself taking pictures of his mother with the camera in my phone (I had to get my niece to show me how to use it when we were in Florida).

It takes at least four and a half hours to travel by train to Toronto (longer if you are on a milk run, which we are). S. is now shooting riveting video of me typing and himself watching me. Whatever gets us through the long trip, I guess.

We were supposed to leave yesterday but arrived at the station (in the aftermath of another really big snow dump) to find long lines, bad tempers and complete chaos. Our line snaked clear around the station, it’s ending ambiguous (and the folks in each fork threatening to get ugly).

At one point, a disembodied voice actually announced, “If you are going to Toronto, your line is over there” with absolutely no indication as to where “there” could possibly be.

Faced with long delays, several hours of standing in line and arrival at our destination in the wee hours, I decided to cut our losses and postpone the trip to Grandma’s until this morning.

S. was very disappointed but quickly brightened when I offered up dinner at a local gourmet burger joint (three pages of possible toppings and a ‘tower of rings’ are all on the menu) where I downed a big beer (and blew my weight watchers total through the roof).

Early this morning, the train station was unrecognizable from the evening before. The lineup was short (all things being relative) and I felt fine about letting S. explore a bit (without the crowds, I could keep him in my line of vision).

We’ve boarded the train, listened to music, done some reading. S. has told me a story.

Only three and half more hours to go.

Sigh.

D. and my spouse will join us on Friday.

Update: Our trip, in the end, was plagued by delays. And motion sickness. That boy has not brought up so much over such an extended period of time since the Great Rosh Hashanah Puke-fest of 1999. It was grim. Very grim.

Note to self: Too much reading on a moving train is not a good thing, even if the evil genius did write his own magazine and vandalize a picture of his father.



Friday, March 07, 2008

book review: the middle place

I really wanted to like this book. And I was really worried that I wouldn’t.

You see, it’s a breast cancer memoir, written by a young woman (37 at the time of diagnosis) who is also the mother of two young kids.

Sound familiar? And yet, when I first picked up the book, all I could see were our differences (it didn’t help that the review copy I received had what was for me an off-putting quote on the cover about finding out you have cancer and thanking God that you’re somebody’s daughter. I note that the final cover is lovely and much more befitting of the spirit of the book).

I was worried that the book would be badly written or that Kelly Corrigan, the author, would be someone to whom I could not relate at all. I worried that our approaches to cancer, to life and to our common experiences would be too disparate.

I needn’t have worried.

Our differences (which weren’t that significant, anyway) didn’t matter at all once I reached page 11 and the read Corrigan’s description of how she found her lump:

“When Edward [her husband] is away, I often find that I’ve been talked into the tub so that the girls can pour too much shampoo on my bushy brown hair…except on this night, as I brush past my breast to get some soap out of my eyes, I think I feel something hard, just there under the skin. I touch it once, pressing it lightly into the open palm of my hand, and then, after a flash of shock passes through me, I force my full attention to bathing the girls…As I dry myself off, I know I have to touch it again, just to be sure I’m wrong. I’m not.”

Over the next few weeks, Corrigan would continue to check the lump, “… I touch it again and again, like you would a loose tooth or a cancer sore, each time, surprised to find it still there.”

These words resonated very strongly with me. I was hooked.

The book alternates between stories of growing up in a pretty traditional Catholic family (Corrigan has two older brothers and was very much the apple of her father’s eye) in Philadelphia. At first, I was much more interested in the cancer-related material in the book than I was in the stories about her family (although her description of killing a giant snake that her brother had bought definitely got my attention). Then came the story of Corrigan’s year in Grade 6 when she was tormented and excluded by a group of girls. Her mother later identifies that as the worst year of her life, explaining, “You’ll see. When you’re a mother and your kid’s in pain and you can’t stop it, its hell. Absolute hell.”

This reminded me of my own son’s very difficult time in Grade One and of how truly distressing it is to see your child in pain. It caused me to think, as well, of my own parents. I have come to realize that the only thing worse than having cancer would be to have it happen to my child. And I reflect on how difficult my experience with cancer has been for them.

Corrigan is a gifted writer and she does a great job of describing those first conversations with friends and family and dealing with others’ emotions as well as her own. I fielded countless questions from friends and acquaintances when I was first diagnosed, about finding my cancer, my treatment and what I thought could have caused it. As Corrigan says, “It’s a big job, being the first person your age to have cancer.”

Also extremely evocative were her descriptions of chemotherapy (and being both fascinated and repulsed by other patients), missing life while in chemo’s haze (not being able to be there for her kids, missing moments you know you’ll never get back) and finding herself, never really having been sick before suddenly taking a long list of meds to manage the cancer and it’s side effects.

In the end, when Corrigan has her lumpectomy (she had chemo first, followed by surgery and then radiation), she finds out that her lymph nodes are clean and that her tumour had clean margins (this is very good news). She also finds out that her tumour is hormone positive. This will make her cancer easier to treat. The treatment, however (Tamoxifen) will shut down her ovaries for the next five years.

Corrigan is devastated by this news, as she had always planned to have more kids (this may still be possible once treatment ends but it will be an uphill battle). I knew that my family was complete long before I was diagnosed with breast cancer, yet I can empathise with Corrigan. Chemotherapy sent me into early menopause at 38 and I do grieve a little bit at the myriad ways that cancer has changed my body.

The reality is that cancer changes you. Irrevocably. Corrigan laments not being able to “go back to the life I had.” I can really relate to this. When we are first diagnosed with breast cancer, most of us tell ourselves that we will put up with the worst cancer throws at us, get through treatment and then pick up our lives where we had left off. It doesn’t work like that. Even for those lucky enough to avoid (or defer) a recurrence, cancer remains a presence in our lives, manifesting itself physically and emotionally.

While Corrigan is still in treatment, her much loved father is diagnosed with prostate cancer. On the one hand, you get the sense that Corrigan welcomed the distraction the opportunity to do something for someone else (even if, in doing so, she admits to driving everyone around her crazy, as she obsessed to the point of asking input on her father’s treatment from her surgeon as she was being prepped for her lumpectomy). On the other hand, I remember very well what it feels like to be in that initial phase of cancer treatment. And, honestly, I can’t imagine what it would have been like to add worry for a loved one to the mix at a time when I could barely keep myself together. And, again I am reminded of the period when my son was in crisis at the same time that my mother suffered a heart attack after undergoing surgery. I remember what it was like to forget to breathe, to feel as though you might die from the stress.

Other parts of the book made me laugh out loud, though. I particularly loved her description of the “Guess Jeans Fight” of 1984, a row she had as a teen with her mother (she wanted to get a job to earn the money for the jeans. Her mother vetoed that but later relented by buying them as an early Christmas present). In a subsequent passage she tells about losing her virginity while wearing those same jeans, “…Jimmy Betts, with hair as light and tousled as an angel’s, was my first non-fictional boyfriend..”

The story that remains with me, though, is not really about cancer at all. Towards the end of the book, Corrigan and her family went on a Mexican beach vacation with friends and their young children. One evening, as they settle in for cocktails and ready themselves to make dinner after a day in the sun, Corrigan notices that Claire, her toddler, is nowhere to be seen. A frantic search ensues (could she have gone back down to the beach by herself?), and eventually, the child is found, curled up and asleep.

I feel the waves of relief as I read this (what parent hasn’t felt that panic for even a few seconds at some point?) and I can’t help thinking, yet again, about how life can change in an instant.

As I write this Corrigan and her father are both doing well. Although, her father is in treatment for a recurrence, he continues to coach lacrosse. Corrigan continues to write (you can read more about her and her book tour here).

I highly recommend this book – if are seeking insight into what it’s like to be diagnosed with breast cancer in your thirties, are seeking words that reflect your experience (no matter how different your background or life goals) or if you just enjoy a moving story, told well and with humour.

The Middle Place is published by Voice (Hyperion Press).

Thursday, March 06, 2008

stop the presses!

The headline would read, “Two young Ottawa brothers, five years apart, play together for more than an hour without fighting.”

I didn’t really plan to have my kids so far apart. It’s just that I wasn’t in a big hurry to be pregnant again after the first time (I was sick the whole time, with horrible heart burn and fatigue. I was also plagued by what I later learned was ante-natal depression).

And then when I was ready to be pregnant, I had a miscarriage at eleven weeks. Having lived through that enormously traumatic experience, I was not keen to try again for many months.

So my kids, in the end, were born almost exactly five years apart.

At first, I found this to be advantageous. S. was keen to show the new baby how grown up he was and began to get dressed by himself every morning. He was also very eager to help and I would have him hand me things when I changed a diaper or simply make faces at the baby to keep him entertained (at that age, the boys found each other to be endlessly fascinating). It was good to have a child who was a little more independent, when the little one relied on me for everything.

But as the boys grew older, and their interests grew more disparate, they stopped seeking each other out quite so much. And they also figured out how to get under each other’s skin as only siblings can. These days, they seem to only play together under duress (or in response to a bribe, I admit it), when D. is bored and S. must “entertain” him as one of his chores. And all too frequently, even this scenarios end in yelling and tears of frustration.

There are, however, glimmers of hope. The boys do tend to stand together in times of adversity (usually in opposition to their parents). And they genuinely missed each other (at least in theory) when D. and I were away for a week.

And then, last Saturday, a remarkable thing happened. D. decided that he wanted to write a story. When S. heard the title, “The Boy who Fell Down the Toilet,” he became very interested (nothing like a scatological reference to bring two boys together), got out the computer and proceeded to download graphics from the internet to use as illustrations. Before long, the boys had created a series of four short stories, written by D., with illustrations, typing and editorial input by his older brother.

The stories (in which the poor central character went on to get stuck in a sewer, a bathtub and a sink) were then performed to great acclaim for a parental audience (they really are both bright, funny, creative kids, in my entirely unbiased opinion).

The glow from that morning lasted for the rest of the day, as the boys basked in their success. I knew it wouldn’t last but the fact that this rapprochement had occurred made me very happy.

I want very much for my boys to be friends as adults. My own relationship with my sister is extremely important to me and it means a lot that we genuinely like each other, in addition to our strong sibling bond.

I know my boys will be good, kind men who will look out and care for each other. Saturday’s events gave my hope that they might be friends as well (and successful creative geniuses, too, of course).

So when yesterday morning rolled around, with both boys screaming and in tears (with lots of cries of “He always…!” and “He never….!), I quietly reminded myself of Saturday morning and waited for the storm to pass.

Cross-posted to Mommybloggers.

Wednesday, March 05, 2008

irreconcilliable truths

Fact: Yesterday was a chemo day. And even though it had been four weeks since my last treatment (and I felt terrific), my neutrophils (the white blood cells that fight infection) were barely above the point at which they cancel chemo.

Fact: At this time of year, my youngest son is a snot factory. This morning he was cuddling in my bed, sharing my pillow when he wiped his nose with his hand and then proceeded to stroke my face (a gesture of love. I only recoiled inwardly).

This, I remind myself is why Neupogen was invented. Bring on the super-expensive little vials (ten doses after each treatment cost more than $2000). Bring on the needles. I'm ready.

Tuesday, March 04, 2008

cap in hand

The more observant among you will have noticed the addition of a "donate" button to my sidebar.

I've called it the "tip jar" to make myself feel better about having it there.

This is something I have resisted doing for a long time (although I have never judged others with these little do-hickeys) because it felt too much like sticking my hand out (which it kind of is). And, as cancer patients go (and actually, as people go), I am incredibly fortunate. I live in a country with universal health care, I have good private insurance, which includes long-term disability and we are a two income household.

But my income has dropped considerably on disability insurance (which is a percentage of what I was making when I went off and not indexed to inflation). And this blog (and by extension, cancer - the irony is not lost on me) has opened up a whole new world, in which I would like to continue to participate.

There are a number of conferences in the coming months that I would love to attend:

The World Conference on Breast Cancer , in Winnipeg, June 4-8.

BlogHer, in San Francisco, July 18-20.

The Cancer Bloggers Reunion (organized by the Assertive Cancer Patient), in Seattle, July 23-25.

Now, the world certainly won't end if I can't participate in these events but I would love to go to at least one of them. I do feel that I have a real contribution to make, that I will learn a lot and that my writing, this blog and my community (online and off) will all benefit.

So I am looking at myriad ways to keep costs down. But I'll still need to find funding to attend even one of these conferences. To that end, I have opened a savings account into which I am putting my ad revenue (a whopping $100 since December). And if anyone clicks on the tip jar, it will go in there, too.

So if something I write particularly resonates with you and you have a little extra dough, by all means, click away. Or if you've always wanted to buy me a beer (or a glass of wine) or even take me to lunch, now's your chance.

And a note to my friends who sent me to BlogHer for my 40th birthday last year and to my family members who have already been unbelievably generous: this request DOES NOT APPLY to you! In fact, I think the button won't work if you try to use it.

Off to chemo today. Not minding so much now that I know I'll have three glorious weeks off.

Monday, March 03, 2008

i resolve: february in review

It's time to catch you all up on how I've been doing when it comes to my resolutions for 2008.

FAMILY

I have been doing really well in this category (which is, I suppose, why I am starting with it) and I am happy to say that I have done everything to which I committed at least once.

GETTING ORGANIZED

In January, I vowed to begin by cleaning out my food cupboards, fridge and freezers. As I write this, my fridge is full of sludge, the freezers are full of frost and unlabelled food items and my cupboards are so full that stuff falls on my head every time I open a cupboard door.

I have decided to delude myself remain optimistic for one more month, though. So, for March, I resolve to grab a big garbage bag (and some rubber gloves) and get the job done.

HEALTH

I had mixed results in terms of meeting my fitness goals.

I pledged to attend four yoga classes. I made it to two (I was in Florida one week and S. was sick the next). This month, I think I need to shake it up a bit and attend some classes at my local community centre. I will do this at least four times.

I had set myself the goal of walking an average of five one hour walks and one half-hour walk every week. I very nearly made it (S.'s illness and a wicked cold snap caused last week's walks to be abbreviated). In March, I resolve to meet this goal.

The other promise I made was to begin to do some work to build up core strength. I didn't do a single sit-up or abdominal crunch. This month, I'll do it, starting today (I'm attending a cardio-kickboxing class. I imagine this will involve some abdominal torture strengthening).

Update at 7:47 pm: I didn't make it to cardio-kickboxing but I did go for a long and vigorous walk. I think I forgot to keep the 'R' (for 'realistic') in S.M.A.R.T. I did do a few leg lifts and a few crunches, though.

You have to start somewhere.

As for my diet, I have been gradually, and successfully, making small changes. I eat very little sugar, add flax seed to my breakfast cereal and drink green tea almost every day. I have also increased my consumption of veggies and fish.

I have come to terms with the fact though, that now (especially that I will be going for chemo less frequently) is the time to take my commitment to good nutrition a little further and focus in earnest on losing some weight.

My weight has been steadily climbing over the last year and the trip to Florida served as a bit of a wakeup call (very few of my summer clothes fit, the reflection of my ass in the mirror made me wince and my trim and fit in-laws serve as an inspiration). The health risks associated with excessive weight are even higher for a cancer patient and maintaining a healthy weight is one of the best ways to manage lymphedema.

In order to lose weight, I need structure and Weight Watchers has worked very well for me in the past (I lost 48lbs after D. was born and kept most of it off until I started cancer treatment) For me, it's not enough to say "Beer is fattening" but instead, "Beer costs three points that I could spend on food!"

I signed up for the online program this morning (I already go to enough appointments). I figure that telling all my internet peeps (and anyone IRL* who will listen) that I am doing this should have the same effect, in terms of keeping me honest.

I have set several small goals for myself, the first of which is to lose 10 lbs (at a rate of no more than 1-2 lbs per week). I'll keep you posted.

I still owe you all posts on my resolutions (and progress) regarding writing and re-connecting with friends. I will be able to get to those this week, as tomorrow is a chemo day and I will take my laptop to bed with me.

*IRL=in real life.

jeff healey succumbs to cancer at 41

The world lost a major talent yesterday.

This is such sad news (and my heart goes out to his family).

But Jeff Healey lived more in 41 years than some people do in twice that time.