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.

i can relate to this...

...and so can, I would wager, anyone who has been harassed by  condescended to infantilized by dealt with an insurance company on health related matters.

Especially if you have been on long-term disability for any length of time, you can expect regular correspondence. Blogger Katherine describes this experience:

"But as sure as the swallows return to Capistrano, every March CIGNA sends me information on its Cancer Support program. Last year’s began “Good health is a gift.” This year’s reads like a grade school report:


Dear KATHERINE O’BRIEN:


The American Cancer Society estimates that two men and one in three women will face cancer in their lifetime. Although these are scary statistics, CIGNA HealthCare wants you to know we’re here to help…"

Most of us just sigh, groan, maybe yell a little and then toss the letters into the recycling bin (unless it is one of the letters making demands to send information we have alread sent them SEVERAL TIMES. Then we scream a little louder, call the company, get transferred to voice mail, leave a message and then never hear back, send the info as requested and then get ANOTHER LETTER requesting the SAME INFORMATION and scream some more. Or maybe that's just me.). After years of this kind of correspondence, Katherine decided to write back (CIGNA is her insurance company):

"Dear DOUG:


Thank you for your letter of March 2010! I couldn’t agree more that good health is a gift! I was blown away that you want to help me make the most of it.


It was gratifying to know that “as health care claims are submitted to us, we review them and identify steps you might take to help improve your health.” Gosh. I feel a little guilty. I mean, you are poring over my health claims and I am doing bupkis for you. Maybe I could clean out the coffee room fridge in Bloomfield some time? Police the parking lot? Just let me know.


As you might have gleaned from your research, I have metastatic breast cancer. My doctor says that in 2010, there’s no cure for metastatic breast cancer. Of course that’s what she said in 2009. So I do intend to doublecheck in 2011. I will keep you posted...


...I think it is important to take care of me, too. I see Dr. Gaynor once a month. It might be hard to see her more regularly than that. Unless she wants to join my mahjong group. I will make inquiries."

You can read the rest of the letter and Katherine's post about it on her blog, ihatebreastcancer. Thanks to Anna Rachnel (ccchronicles) of The Cancer Culture Chronicles for telling us about Katherine's letter via Twitter.

i'll take it.

No nausea.

No bad taste in my mouth.

No rage or sadness.

No aches and pains.

I'm just very, very tired.

I'm not complaining.

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.

feeling better

Because I've been able to go out for walks and for runs with the dog.

Because I had a really nice weekend and a very nice Valentine's Day (especially for someone who doesn't really celebrate it).

Because I have so many wonderful people in my life.

Because some of my symptoms have improved considerably (and they most definitely did not improve at all before I was diagnosed with the recurrence of cancer).

Because I have survived experiences that have been far more physically traumatic (like giving birth. Twice) than an endoscopy could possibly be.

I am feeling better today.

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.

but i have an excuse (actually i have a few)

I bailed on National Novel Writing Month on the first day, having written just under 700 words.

I felt like there were too many other interesting bits of writing that I wanted to do, including continuing to edit last year's novel.

And then my life became insane. I've been really hard on myself for all the things I'm not doing lately. This week, though, I've had two people who are very important to me (my coach/therapist and my friend DM) listen to me unload and then tell me that I would have every right to feel overwhelmed with a fraction of what I've got on my plate.

I tend to be hard on myself because I don't work outside the home right now. If I don't go to a job I feel like I should just sail through my other commitments. It felt really good to list everything going on in my life and have two women I respect offer support and sympathy. I've decided that I need to cut myself a lot more slack.

I can do NaNoWriMo next year. I'm OK with that. But I did feel a pang when my son sent me this video:



NaNoWriMo was a fun kind of crazy. I just couldn't let the rest of my life go to do it this year.

this is kind of nice

TopOnlineColleges.com as included Not Just About Cancer in their list of "15 Inspiring Breast Cancer Blogs."

Get inspired by this breast cancer survivor, who turned her unfortunate situation into a book about defying the odds and beating cancer.

Pretty cool, no? It's nice to know that someone's reading and finding resonance in my words. As for the "beating cancer" part - I know it lurks there somewhere and that we who have gone to Stage 4 are never, ever out of the woods but I do like to think I'm beating it.

making the best of it

I think I've coped with chemo week much better this time around (thanks in part to some good advice from a friend).

chronically whiny

I always think it's going to be different.

I say to myself, "This round of treatment, I will exercise and write and continue with my daily routine and see if that makes me feel better."

And thent, in the days that follow each dose of vinorelbine and Herceptin, I stay in bed too sick to do anything and lacking the self-discipline (motivation?) to try getting exercise, writing or going about my daily routine.

I don't even bother to eat well (although the soup I made the night before chemo was delicious and easy to heat up, so I did eat lots of that) or even do the easy things that might help (I was on the phone with my writing buddy and she asked if I'd been drinking hot water with lemon and ginger. Easy to prepare and she swears by it, yet I had completely forgotten).

I don't even drink enough water.

I just wait until the weekend when I know I'll feel better (unless I get sick, as I did yesterday and had to miss dinner with friends and my beloved book club).

I'm fed up.

Fed up with losing a week out of every month.

Fed up with having to constantly worry about my energy levels and not overdoing.

Fed up with not  having answers and having to worry.

Sometimes I amuse myself (and no one else) by announcing, "I'm done. That's it!"

But I don't really mean it. 

I know where I'd be if it weren't for all the chemo and the Herceptin. And I know that it's worth it.

And who knows? Maybe next time will be different.

43 things (part three)

22. One day, when I was small, my aunt bought me a Buster Bar. Before I could eat it, it fell off the stick. She didn't buy me another one.

23 I had Dilly Bars instead of cake on my birthday this year. I ate two.

24. I also had a beer during the day on my birthday, something I consider very decadent. I usually only do this with my friends L. and K. (otherwise known as Sassymonkey).

25. The day after a social gathering, I spend a lot of time second guessing my behaviour, even when especially when I had a good time.

26. I feel guilty about something several times a day. Only recently did I discover that this is not a universal experience. I'm curious what it's like not to feel guilty.

27. My life in treatment is a constant tension between search for structure and then rebellion against self-imposed structures.

28. I have voted NDP in every provincial and federal election since I was old enough to vote (although I have sometimes done so while holding my nose).

29. This was the first year since 2007 that I didn't go to BlogHer. I'm OK with missing it (I had three great years there. The first was an amazing birthday present, the second I was a speaker and last year, I got to bring my book) but I'm a bit sad, especially since I finally feel like I figured out how to really enjoy the experience. There are lots of folks I would have liked to see (Average Jane and Nonlinear Girl were on a panel together. Whymommy was on a panel about blogs as an agent for change) and there are so many folks with whom I would like to spend more time.

30. When I was a teenager, I had a huge crush on the Cassidy brothers. I especially loved Shaun.

31. I was a hideously self-absorbed and narcissistic thirteen year old. It's amazing that my mother let me live.

i get personal with the Run for the Cure

This is the text from my page at Run for the Cure site;

Thanks for visiting my personal page.

I was diagnosed with very agressive breast cancer in January 2006. In November of that year, I learned that it had spread to my liver.

My oncologist told me that the were "more tumours than they could count" and when I asked how long I could expect to live, he reluctantly answered, "Years. Not decades."

Fast forward to June 2007, when after several rocky months of treatments, I started feeling much better. Then, on June 30th 2007, a scan confirmed what my body had been telling me - there was no longer any sign of cancer in my body!

I have been in remission for three years. I'll remain in treatment (chemotherapy and Herceptin every four weeks) for the forseeable future, though. There are so few women in my postion that no one can reliably say what will happen if I stop. But I've noticed that my family and are planning ahead and casually making reference to events that will take place years in the future and assuming that I will be there.

I am running on October 3rd so that more women will be granted a future they thought had been stolen from them.

I'm running in the hope that some day soon women like me can walk away from treatment with confidence that the cancer is behind them.

I'm running so that my nieces and other young girls need never worry about breast cancer at all.

Can you support me (please)?

I have added a permanent link to the blog (top right hand side) that you can click on any time, if you want to make a donation.

(Our team, No Pink for Profit, now has seventeen eighteen members. Three Four other women have committed to join us. There is still room for more though - you can run or walk at your own pace. You can pay the entry fee or decide to fundraise. It's completely up to you. All women are welcome).

well, hello there

Yikes!

It's been a while, hasn't it?

I seem to have lost my blogging mojo. I remember a while back when Average Jane wrote that her blogging had been derailed (my word, not hers) by Twitter and Facebook. I get that now.

Whenever I have a quick observation or a link to share, I can gratify myself instantly with Twitter (I'm lauriek, by the way). And while each tweet does go to Facebook and the sidebar of Not Just About Cancer (on the right - see it there?), it hasn't done much for my blogging.

I don't want to give up the blog though, so I'll try and re-commit to posting regularly (how's that for hedging my bets?).

On the cancer front, there is a little news. I loved having a break in April. That month also brought another clean CT scan. My oncologist continues to be happy with how things are going (or not going, really).

We talked a bit more with about the weirdness of being in ongoing treatment (with side effects that are cumulative, both physically and emotionally). He talked frankly (one of the things that I love about him) about how, in my case, he really has no idea what to do.

We don't know what would happen if I were to take a longer break from treatment or stop it altogether.

"You're a riddle, wrapped in a mystery, inside an enigma," he said, quoting Churchill.

He said that, theoretically, we could start our own clinical trial, where half the women stop treatment for three months and half continue as I've been doing.

"But then what do you say to the women in the first group, if the cancer comes back? 'Oops?' 'Im sorry?' " (I'm convinced that the man lies awake at night wondering about these things. His compassion is another thing I love about him).

He has a way of putting things into perspective for me.

I had planned on asking for another break in six months but he surprised me by suggesting I take a break in August (hooray!)

He also said that, some time in the future, he's not sure exactly when, he's going to feel ready for me to take a longer break. Meanwhile, I'll have fewer appointments with him and, unless I'm worried about something, I can call them in (another hooray!).

I am very pleased about all of this but I admit to also feeling a little blue. I'm still dealing with some of the "grey area" fallout. It's really hard to articulate (and I feel guilty for even complaining. Guilt would be a good subject for a whole other post).

Life is a funny thing. And it's really hard to plan even five years ahead, because you never know what's going to happen. I'm trying right now to return my focus to living in the moment, accepting what is and reminding myself to notice the good things.

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.

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.

soup and the missing muse

I made three soups in January.

Red lentil and carrot from Cooking with Foods That Fight Cancer

Broccoli cheddar from Looneyspoons: Low-fat food made fun!

Jambalaya from Weight Watchers (heavily modified: I substituted white fish for shrimp, used more liquid and had sausage on the side, so folks could choose their level of spiciness. And I didn't use chicken. And I used different spices. This for me, was a wildly adventurous departure).

If I don't run out of time today, I plan on making a pre-chemo Sweet potato and roasted garlic soup from the The Eat-Clean Diet Cookbook: Great-Tasting Recipes That Keep You Lean!
A friend gave this one to me. I recall it being time consuming but delicious..

I have had a post on the tip of my fingers about my current highly ambivalent feelings about my life, identity and treatment but I can't seem to bring myself to write it.

In fact, I can't seem to bring myself to write much these days.

Maybe, later this week, as I recover from chemo.

Tomorrow is Groundhog Day. And the four year anniversary of my mastectomy.