in translation

The cancer centre has implemented something new. When patients check in for treatment, we're asked to fill out a questionnaire related to our well-being (it has some acronym but I can't remember it). We're given the option of filling it in on a central computer but I'm really squeamish about germy public terminals. I always ask to fill the thing in manually (furthering my feeling that I am more of a Luddite than some of my seniors).

Filling out the form involves reading statements such as "I am in pain" and then circling a number between 1 (no pain) and 7 (excruciating pain - or something like that). Most of my numbers were very low except for the ones about my emotional well being and sleep habits. My answers resulted in the following conversation with the well-meaning nurse who checked me in for treatment:

Nurse: 

"You're depressed. Why?"

Me: 

"I'm just a little blue. Five years of doing this is a long time." (Translation: "I'm pissed off and fed up and I have survivors' guilt.") 

"I'm seeing someone at the psychosocial oncology centre." (Translation: "I don't want to talk about it with you, in front of the all the strangers in the room"). 

"The crisis is over and now it's all hitting me." (Translation: "I think I have PTSD. Did I mention that I'm pissed off and fed up?")

Next time, I'm stuffing the damn form into the bottom of my purse.

"none of us knows when we are going to die"

On April 25th, Alaina Giordano lost custody of her children. A North Carolina judge ruled that her two kids need to move to Chicago to live with Giordano's ex-husband. She based this decision, in large part, on the fact that Giordano has Stage 4 breast cancer.

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I can't be articulate about this story, except to say that I work very hard to make sure that my kids will be all right- no matter what happens. I wish I could protect them and all those who love me from the realities of cancer. But do I think that cancer makes me a less fit parent?

Not on your life.

Want to read more?

I first read about this on BlogHer, where Jenna argued very articulately that anyone who has ever been ill or ever might be should care about this story and the frightening precedent it has set.

My friend Judy (from Mothers With Cancer) wrote a beautiful response called "We Are All Terminal." 

You can read Alaina's own words on her blog, Beauty in Truth.

I couldn't find a single post or comment by anyone who agreed with the judge's ruling.

For that, I'm grateful.

selfish (dear loved one)

I'm sorry that my fear becomes yours.

I regret that you get pulled into my panic.

I feel ill when my every cough, ache or bump twists your insides the way it does mine.

I would prefer to protect you.

I want to watch you smile, hear your laugh, feel your heart thump with joy when you pull me to your chest.

I don't want to make you scared, or sad or worried.

But I can't wish you weren't ever scared or sad or worried.

Because I need to share.

Because I need not to feel alone.

Because I need you.

beautiful eyes

That's what struck me when I met Sarah in person: she had the most beautiful deep brown eyes I had ever seen, with a lovely smile to match.

It was February 2010 and we were both in attendance at the Annual Conference for Young Women Affected by Breast Cancer. We had met online through our online community, Mothers With Cancer.

A short time after we met, Sarah found out that her breast cancer had become metastatic and she began treatment anew. A few weeks ago, she learned that the cancer had spread to her brain and she started radiation treatment. A couple of days ago, she was admitted to hospital with breathing issues. Last night, she passed away.

I won't claim to have known beautiful Sarah better than I did. But I did consider her my friend. And I will miss her.

Here are some things I knew about this remarkable woman:

She loved her three daughters very much and she was incredibly proud of them.

She was happily married.

She was a talented photographer.

She loved animals, especially dogs and horses.

She had an appreciation for good coffee.

She left this world way too soon.

Sarah, you will truly be missed. My heart goes out to your family and to all who loved you.

You can read more about Sarah at her blog, Spruce Hill. Tributes have also been posted by Jenny (cross-posted to Mothers With Cancer), Susan, Nicole, Ree and Mary Beth.

Note: Blogger was down for about 20 hours and when it came back up, this post was gone (as were the comments from my previous post). If you are seeing this twice in a row on the blog, it will be because Blogger has returned it to me.

not really the end

Did you know that the world is going to end on May 21st, 2011? I saw a guy on a street corner today with a sign that said just that. And then I saw a big-ass caravan with the same message.

Contemplation of our impending collective doom helps to put yesterday's election into perspective. It doesn't matter if the Conservatives were gifted with a whopping majority if none of us is going to live long enough to deal with the consequences. There must be more of these end of the world types than I previously suspected. That would help me understand how it is that so many of us thought endorsing the Conservatives would be a good idea.

Or something. You'll have to forgive me, it's been a hell of a day. I stayed up way too late watching the election results and then stumbled around like a zombie all day. I'm delirious.

I even went across town to an appointment, only to discover that it's on Thursday.

It was a very odd feeling last night to watch the NDP take over 100 seats (the previous high having been 43) and not feel elated. Proud, yes but not elated. I just kept watching the Conservative and NDP numbers rise at the same time and feeling like my head was going to explode.

Those of us who oppose pettiness, meanness and bigotry and who support human rights and democracy (not to put too fine a point on things) have four years to get our act together. 

And I think we need to really start screeching about proportional representation.

Meanwhile, I really am thrilled that my party is going to be the Official Opposition. There is hope for the good guys (thanks, good guys, for working so hard to get yourselves and like-minded folk elected). I'm thankful to all the volunteers, staff and veteran politicians and candidates who worked so hard to make this happen.

And, even if I am slightly hysterical, I'm choosing to repeat the words of one of the surprised, young, brand new MPs from Quebec, "It's going to be all right."

my kids are alright

I had a dream a few nights ago.

My kids were in a giant flash mob, dancing their hearts out, surrounded by dozens of other kids and adults. They were exuberant and focused, their movements fluid and in synch with those around them. My heart swelled with pride and joy.

I learned that the flash mob had been created to drum up excitement over an upcoming performance. In a couple of hours, my kids would go on stage and perform. I could tell they were ready.

Then I was handed a note. My own performance was scheduled for right after theirs. I was wholly unprepared. I hadn't even looked at my script. I was rushing off to find it when my alarm went off.

Sacha was in a play very recently. And they did organize a flash mob a week before the performance, as a form of advertisement. And Sacha performed beautifully. My heart did swell with pride.

In part, my subconscious might have been remembering the play but I choose to believe that I was also sending myself a message.

Life with metastatic breast cancer is filled with uncertainty. But no matter what happens, my kids will be fine. They are smart, talented, resourceful and resillient. They have friends and family who love them. My kids will be alright.

optimism tested

As we were listening to yet another story on the news this morning about how the Tories and the RCMP have barred people from attending campaign events (for things like having a photo of Ignatieff on their Facebook page or having been involved in an youth environmental organization), my spouse announced "It's going to work."

I was only half way into my first coffee, so I made him repeat himself. "None of this is going to matter," he said. "It's a story for now but it won't affect the election. The Conservatives will get a majority and then, next time, the other parties will have learned that hateful advertising and ignoring the truth are the best strategies to get ahead." (Forgive me, Tim, I'm paraphrasing. That's the gist of what he said)

I fear that he's right. Even the revelations about former aid Bruce Carson have barely affected the campaign.

Perhaps politicians have always said one thing and done another. These days, though, they barely have to pretend otherwise. And some, like Rob Ford in Toronto don't pretend at all. He's thoroughly corrupt, rude and uninformed. And people love it.

And then I learned that Bradley Manning, the 22-year-old U.S. Army Private accused of leaking classified documents to WikiLeaks has been subjected to torture in prison (Avaaz.org has a petition, if you want to add your name), despite the fact that he has never been convicted of any crime (not that conviction would justify torture).

So the message, boys and girls, is as follows. Telling the truth could lead to severe punishment but stealing and lying can only get you ahead.

It's enough to make any thoughtful person feel like ranting. Although I could never do it as well as Keith Olbermann.

Or Rick Mercer.

And please, if, like me, your sickened by corruption and lies and if you believe that a democratic government is a transparent one, please get yourself to the polls on May 2.

what if nothing changes?

Today is a treatment day.

For the first time ever, I will have Herceptin on its own (if you don't count the Demerol and Gravol I get to keep the shakes and fevers at bay).

Some people have almost no side effects with Herceptin. Some feel like they have the flu.

Will the fact that my body has such a strong response to Herceptin mean that I feel more of its side effects?

The break from chemotherapy is meant to help me heal and rebuild - physically and emotionally.

The break from chemo is also a risk.

Here's hoping it all works out for the best.

mixed. but good. i think.

And I'm not talking about the weather, which while it has been mixed, has been pretty consistently bad for the last twenty four hours. We had a big dump of snow (the photo above was taken from my front door), followed by freezing rain, which will be followed by ordinary rain.

Good thing I just bought rain boots.

My GP called me last week to let me know the results of my endoscopy (I won't get in to see the gastroenterologist until March 21st). All my results were negative - no celiac, no bacterial infection, no cancer. It's all good.

Then I talked to my oncologist on Friday. We discussed my scope results and my digestive symptoms (diarrhea, heartburn, abdominal pain). He expressed surprised that I was still feeling lousy on Friday after a Tuesday treatment. I told him that my recovery time had gone from four to six days and that last round, I'd felt sick for a week (this ended up being the case this time, too).

Then my oncologist said, "It's time to take a break."

I was floored.

I had been hoping to hear these words for months (years even) but when I finally did, I definitely had a mixed reaction. I'm being taken off the chemotherapy not because I've been in remission for a while (although I have) but because the chemo has started to take too big a toll on my body.

As Dr. G. said, "You can't stay on vinorelbine forever."

I'm going to continue with the Herceptin but take a break from the chemo for at least three months. Herceptin is also known to induce flu-like symptoms but I don't think it has the lasting toxicity of chemotherapy drugs. I'm likely to bounce back more quickly after treatments.

So we'll see what happens. There are no guarantees of anything and no promises. Every change involves risk.

But the next few months will be devoted to healing.

Cross-posted to Mothers With Cancer.

scoped

I once had a colleague who was a former Fleet Street journalist. I can't remember his name but I do remember a story he told over a particularly boozy dinner.

"The worst kinds of press releases," he said, "keep all the best bits for the end. That's just not how it should be done. It's like reading a news story that says 'A crowd gathered at Buckingham Palace today. There were also fire engines and ambulances. The corgies were brought out to safety. The Palace burned to the ground. The Queen is dead."

As I went on to work in communications, I kept that anecdote in mind and tried to make sure that the most important facts were kept in the lead of my news releases.

But this is not a news release and I can tell my story in way that pleases me.

I had an endoscopy yesterday.

I wasn't terribly worried when the secretary at reception couldn't find any record of me. I credit the Ativan for that. You still feel the anxiety but it's further away. Almost like it's someone else's anxiety.

She must have found me in the end, because I was called into the endoscopy unit, given an id bracelet and told to change into a robe.

The endoscopy unit at the Civic Hospital could use a facelift. The paint was peeling off the walls in the waiting room and the beds in the prep and recovery area are separated by curtains. My neighbour and I learned a lot about each others' medical histories and bowel movements.

Every nurse I spoke to was very taken aback that I should have metastatic breast cancer at my age.

Every one of the nurses was really kind.

The nurse who took my history and prepped me for the anesthetic noted my "crappy veins" but she got the vein accessed in one poke, so major kudos to her.

My bed was eventually wheeled into the room where the procedure would be done. At this point, I met Dr. A. for the first time. There was another doctor with him who introduced himself so quickly that I didn't catch his name. This second doctor, who I assume was a resident (why don't they introduce themselves as such? Residents always say, "I work with Dr. So and So." They never say "I am learning from Dr. So and So. Do they think the patients can't be trusted with this information? This really bugs me because I can always tell they are residents and I would be much more forgiving if they were honest with me) began to very rapidly list off all the horrendous risks of the procedure and then handed me a waver to sign. 

It's a good thing that I had done tons of my own research (and that I had taken the Ativan) because I might have demanded that they wheel me out of there.

Dr. A. asked me if I had signed the waiver and if I had any questions. I said, "I just want to get this over with."

I mentioned my strong gag reflex to Dr. Resident. He instructed the nurse (pompously? Am I being biased?) to give me some extra shots of the anesthetic spray for my throat (I had the distinct impression that the nurse was going to do this anyway but perhaps I am biased). Then they hooked me up to the drip, placed a plastic frame with a hole in it in my mouth and shoved a tube down my throat.

I then proceeded to gag, choke and gasp for breath. Tears streamed down my face. 

I'll never forget the nurse who gently held my head and spoke comfortingly to me.

It's amazing how big the endoscopy tube looked to me. There's no way it could have  been that big in real life.

I heard Dr. A. say something about how studies had shown that the gag reflex was greatly diminished when Fentanyl is administered.

I heard Dr. Resident sound surprised.

A nurse administered Fentanyl via my IV. And then I was really, really stoned (I just read that Fentanyl is 100 times more potent than morphine and I had a cocktail with other sedatives).

Not sure if I passed out or not but I was pretty woozy. I know they called T. to come and get me. And I know that one of the nurses suggested I try and get dressed.

I sat up and nearly puked. The nurse got me to lie back down again.

Lather, rinse and repeat a few times.

One of the nurses gave me some apple juice, which helped.

I asked what drugs I had been given. A nurse looked that up and said with surprise that I had been given a drug in the Valium family and Fentanyl. She said, "No wonder you're so wasted."

I heard someone mention Gravol (known as Dramamine in the US). I now understand why they give it to me each time they give me Demerol at the cancer centre. They gave me a barf bag.

I texted T. to see why he still hadn't arrived. He texted back that he was in the waiting room. I told him to come get me. He said that the secretary wouldn't let him past the waiting room.

If he wasn't allowed past the waiting room and I wasn't allowed to leave without him (nor could I walk on my own), we were kind of stuck.

One of the nurses went to get him.

Before I left, Dr. A. came to talk to me. He said that I am to come to his office in around four weeks, at which time I will get my results. He also told me that there were no visible tumours (see what I mean about burying the good stuff under a whole pile of details?).

I went home and slept for 6 and a half hours. It would have been longer if T. hadn't come into the room to check on me. I was pretty dopey all evening (giving all my online Scrabble opponents an unfair advantage) and hit the hay before 10.

My throat hurts today and I'm still kind of tired but I did get out for a run (it's 10C here today that's 50F), so I guess I'm recovering pretty well.

In a months time, I'll find out if the biopsies revealed any pre-cancerous cells. Or if I have celiac disease. And Dr. A. promised that if they don't find anyting, he's going to want to do a colonoscopy.

What fun.

when Google is not your friend

So I've been having some (ahem) gastrointestinal issues for a while. Last spring, I was diagnosed with GERD. Things got better after I made some amendments to my diet and started taking meds (so much better that I got lazy about the diet and just took the meds). But now the issues are back in spades, along with abdominal discomfort and a feeling I can only discribe as "weasels chewing on my innards."

A couple of weeks ago, I went to see my GP who doubled my dose of the meds, ordered some blood tests and other (ahem) samples and put in a referral to a gastroenterologist. She told me that it would likely be a six month wait.

I had chemo on Tuesday, February 1st, which means I should have been feeling more or less like myself on the week end. I did not. By Saturday, I was still achy, weak, nauseated and the stomach weasels were out in full force. On Sunday, I felt no better.

On Monday, I went back to my doctor. 

She examined me and, to my enormous relief, reassured me that my liver is where it should be (not swollen and tender like it was when I was diagnosed with liver metastasis. She also said that I should  take comfort from the fact that my blood counts, taken less than a week before had shown all my liver functions to be perfectly normal.

We discussed the possibility of me having contracted a parasite or a virus (I certainly know enough people who've been ill, including my two kids. My suppressed immune system - from the chemo - makes me susceptible to every passing illness) or that anxiety could be playing a role in my physical condition.

My doc is a great advocate, though, and she picked up the phone while I was still with her and left a message for the gastroenterologist, asking if I could be seen more quickly.

I left her office feeling almost euphoric, with all health related anxiety pushed to the back of my mind (there was enough other anxiety to take up all the space in the forefront).

Then yesterday, I got a call from my doc's office, telling me that I have an appointment with the gastroenterologist - and an endoscopy - scheduled for February 17. That's really soon.

I've heard that endoscopies can be really traumatic experiences, so I Googled "endoscopy" just to reassure myself (seriously, that's what I told myself).

Well, not only do I not feel reassured (they shove a camera down your throat to look at your innards! I have a very strong gag reflex) but I am now freaking out about the test and about exactly what it is they might find down there. It could be nothing. Could be something relatively benign. Or it could be...well I'm trying not to think about it.

I haven't been for a run in more than a week because of chemo and the (ahem) gastrointestinal issues. But I think I might risk it.

welcome to my life

Earlier this week, my friend K. sent me an article from the New York Times that was the best piece of journalistic writing on metastatic breast cancer I've ever read. And I've read a lot on this subject.

I cried when I read it (but as I told K., in a good way) because it resonated so deeply with me, juxtaposing the facts and the experiences of women living with cancer that can never be considered cured. I started to highlight the best bits to share with you here but ended up cutting and pasting more than two thirds of the article.

I've decided that it's best not violate copyright or my own ethics and just post the link and ask you to please go read this article:

A Pink Ribbon Race, Years Long.

omg

43 things (part four)

32. I can organize ideas, a campaign or a project but I can't organize my house or even a room to save my life.

33. If I become interested in something, it can easily turn into an obsession. At least for a little while.

34. I'm trying to ride my bike as much as possible. I think I'm becoming addicted (see above).

35. I'm always a little surprised to discover that someone likes me.

36. I didn't think Facebook birthday wishes were a big deal until it was my birthday. I loved getting messages from all over the world and from people from all parts of my life.

37. I have already passed my minimum goal of raising $150 for the Run for the Cure. I dream of wildly exceeding that.

38. Two of my favourite childhood memories are of a family cross-country ski trip and going sailing on my uncle's boat. I don't particularly want to do these things now but I felt happy doing them then.

39. I like the idea of creating fun memories for my kids. I wonder if they will hold close the memories of our trips to Florida and our week end at Blue Skies when they are adults.

40. When I was six years old, a man in a raincoat flashed me. I was passing through the parking lot of the Catholic Church, on my way to school.

41. When I'm depressed, I feel invisible.

42. I'm making good progress in my quest to lose 44lbs before I turn 44 (on August 4th, 2011). I lost three pounds in the first week. I know it's going to slow down from here on in but I'm feeling encouraged. And determined. And you're going to be reading a lot about it here and on Twitter/Facebook because I want to stay accountable.

43. I think it's really cool that I'm planning for a year from now.

44 (bonus thing). I really do think that the red Smarties taste best.

i bought a swimsuit

And I posted about it for BlogHer.

I won't say the search wasn't traumatic:

I rejected suits that didn't cover my scars, that were two big, too small or both at the same time. I worked up a sweat trying to get tangled bathing suit straps over my shoulders, often resulting in a look that was reminiscent of a wrestling uniform. I cried a little bit. Regular suits left me feeling too exposed and mastectomy suits bagged on the chest when I was not wearing a breast form.

You can read the rest of the post here. I even posted a picture of myself, wearing the swimsuit.

I didn't get to far on my to-do list this month but these are accomplishments (the doing and the writing) of which I am proud.

really random news

1. According to an article in the Globe andMail, women and men respond very differently when they are on the recieving end of an apology:

“Women who are starved of an apology for rude or hurtful behaviour suffer an increase in blood pressure which can raise the risk of a heart attack or stroke, a study found,” The Daily Telegraph reports. “But those who hear a well-timed ‘sorry’ calm down more quickly, with their blood pressure returning to normal 20 per cent faster, the research showed. Conversely, a man’s blood pressure takes 20 per cent longer to recover after an apology – suggesting men become more worked up after hearing an admission of guilt.”

2. My sister sent me an article from the CBC web site this morning, about a colossal cookbook typo with the subject line "Oops." I've made some pretty big errors by not proofreading properly but this tops it all.

3. My friend, O. posted a story to Facebook today, with the headline "Woman with parrot perched on face arrested after throwing inhaler." Note to self: Don't throw an inhaler while a parrot is standing on your face. You will be arrested.

4. I'm still waiting for my CT scan results, which could be why I'm letting myself be distracted by all this silliness.

pictures big and little

I woke up yesterday morning with a sore throat and a headache.

Here we go again. Having a compromised immune system is no picnic. In the last year, I missed my Toronto book launch because of the flu, got H1N1 on the day the vaccine became available, was hit by Norwalk virus when my spouse was away (and found myself crawling along my kitchen floor with a can opener to "make dinner", got pink eye and more little flus and colds than I want to count.

Chemotherapy destroys cancer cells. It also destroys the cells that fight illness. Despite the fact that I try to limit my exposure to germs, wash my hands regularly, get enough sleep and eat well (not to mention the ten doses of Neupogen with which I inject myself after every treatment), I seem to fall prey to almost every little bug that passes my way (and when you have kids, lots of little bugs pass your way).

I am, literally, sick of it (I've also had benign paroxysmal positional vertigo. That had nothing to do with my immune system and was mostly just an annoyance. And when I realized that I did not have a brain tumour, I was actually kind of amused in a "of course this would happen to me at this point in my life" sort of way. Also, my golden, Emma, had a couple of bouts with geriatric vestibular disease, which I think is basically the same thing).

I need a break from chemo and I'm taking the month of April off. On the day when I would normally be at the cancer centre, I will be travelling home on the train from Toronto with D. (we will have been visiting grandparents, hanging out at the Bat Cave at the Royal Ontario Museum and the Harry Potter Exhibit at the Science Centre).

I'm not losing sight of the bigger picture, though. I have a CT scan today (abdominal and thoracic) and I am worrying about it. 

Because I always do. 

I'm fretting about my veins and how many times (and where) they'll have to poke me before they can inject the contrast but I'm also anxious about what the pictures will show.

Hopefully, everything will look normal and healthy, except for the scars that cover my liver. Hopefully, I can add this to my least of clean scans. And, hopefully, I can keep going through this routine, with the same results for years to come.

I haven't started to take the clean scans for granted. I doubt that I ever will.

inside laurie's head

saying "no" to:

beating myself up

people who make me feel bad about myself

feeling ashamed

hiding from people who love me

giving into my fears

jealousy

Saying "yes" to:

spending time with the people who fill me up

reading for pleasure

tapping my own creative resources

trying new things

fun

talking to my Mom more often

giddy about:

all the great books that are available to read

the way my kids and spouse make me laugh until I cry

dog bellies and snouts

the potential of things I could knit

the thought that I am a Writer

scared of:

dying

not being able to read, or write, walk my dogs or play with my kids

writing fiction and discovering that I don't have the talent for it

anything bad happening to someone I love

deeply inspired by: 

beautiful prose

my sister

my friends

my kids

Lene

being in love

obsessed with:

the clutter in my house (not that I do anything about it)

wondering where the day goes

finding peanut and nut alternatives

thinking about things I could knit (as opposed to actual knitting)

tracking what books i read and planning what books i'm going to read next

Scrabble

in love with:

Tim

my boys

the dogs

feeling the sun on my face on a warm spring day

saved by:

blogging and my journal

world class health care

Tim

the people who love me

good chocolate

finding a reason every day to be happy.

and you?

Thanks to Mocha Momma and Dancing Mermaid for inspiring me to do this.

not unrelated to my last post

Last night I dreamed that I had a lump in the lymph nodes above my collar bone.

I woke up terrified.

The comments on my last post were among the most thoughtful, moving and provocative that I've ever read. I have much to think about. Go read the stories that and responses that women shared with me. I feel grateful to each one of them.

Today, I am going to take the dogs for a walk and then ride my bike (unless I decide it's too cold) to Sassymonkey's house, where we will eat, drink, knit, watch a movie that has nothing at all to do with cancer.

perspective in grey

On June 30th it will be three years since my first clean scan, after the cancer had spread to my liver.

For almost three years, I have had no evidence of disease (been NED, in cancer lingo).

And yet I remain in treatment.

I am asked frequently why I continue to receive chemotherapy and Herceptin, if there is no sign of cancer in my body. And the truth is that I often ask myself the same question. Certainly, I don't feel like I have cancer. And I do feel that the cumulative effects - both physical and emotional of ongoing treatment are wearing me down.

I am stuck in cancer's grey area.

My oncologist said to me last summer, "For all we know, you could be cured."

We just don't know enough.

Another oncologist I spoke to, hinted that some would take me out of treatment at this point. A third suggested that some doctors might take me off the chemotherapy and leave me on the Herceptin.

But they all agree that we just don't know enough to make any decision based on certainty. There are just too few women in my situation, younger women who have been diagnosed with metastatic breast and responded so well to treatment, to know what to do with us in the long term.

There are more of us every year, though.

In ten years' time, there will almost certainly be more answers.

And when I get too frustrated, I remind myself that if I had been diagnosed ten years earlier, I would almost certainly be dead.

So, for now, I'll take the grey.