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.

fat. not unfit.

I am overweight.

It's worth noting, that, even with years of therapy and a good feminist critical analysis, it still feels shameful to write that.

But it's the truth that as a result of genetics, too many diets started at too young an age (I was put on my first one when I was nine), too many emotional issues related to food and sheer laziness/inattention I am carrying around at least forty extra pounds.

Yet I wouldn't say that I'm unfit.

My cholesterol, blood sugars and blood pressure are all excellent. I have a resting heart rate of 66. And I have heart scans every three months (because Herceptin can damage the heart), so I know that vital organ is pumping along very efficiently.

I average 5.5 hours of cardio exercise every week. I run 3-4 times a week, for more than forty minutes. And, now that the snow is gone, my bike is my favourite way to get around town.

Yet, even people who know me sometimes express surprise when I mention that I've just been for a run. Or that I resumed running consistently a year ago. They are so surprised that many times, when I say "run", people hear "walk" (the fact that many people can walk as fast as I run is a separate issue entirely).

Neither my oncologist nor my GP are concerned about my weight.

And while I may not be fast, my endurance is better than lots of folks who are much thinner than I am.

So next time you see an overweight person at the gym, on the trail or on the bike path, please don't assume that they don't know what they are doing. Don't act shocked when they tell you they exercise regularly. Don't give them gratuitous advice on how to "start an exercise program" or "how to exercise safely." 

Fat does not necessarily mean unfit.

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.

giving in to the monkey brain

Herceptin

I think I'm happy with the outcome of the brouhaha over Herceptin in Ontario. For those of you outside the province or outside the loop. Jill Anzarut, a 35 year old woman undergoing treatment for breast cancer made the news last week when she announced that the province had to pay for Herceptin because her Her2+ tumour was less than one centimetre (that's about 1/4 inch) in diameter.

The province initially refused to budge but eventually caved after a massive campaign played out in the social and traditional media. Access to Herceptin will now much more room for discretion when it comes to providing access to the drug.

I feel good about this. It's not that I think that every drug should be funded for every person. Her2+ cancers are very aggressive and, as best put by Stephen Chia, chair of the British Columbia breast-tumour group, “In HER-2 positive cancers, it’s not the size that drives it; it’s the HER-2 gene that drives it.” 

Election

Canadians are once again going to the polls. I am not happy about this. 

I'm sad that the long overdue Bill C-389 protecting the rights of transgendered people will die before it gets the chance to be thrown out by the Senate.

I'm worried that we will end up with a Conservative majority.

I have election fatigue. There was a time in my life when an election would make me feel excited and hopeful. Now I just think, "Ugh."

Presents in the mail

Did you see my scrabble pendant in yesterday's post? My friend Leslie sent it to me after I told her I'd like to have on with my initial on it. It made me very happy to open the envelope that held my surprise.

The bad with the good

Last week, I received my author's copy of the current issue of Canadian Woman Studies. The theme this quarter is Women and Cancer and I have a poem that is part of a piece called "Seven Reflections on Breast Cancer by Seven Women Who Worked Together." I'm happy about that.

I'm far less happy about another piece I stumbled on when I was leafing through the issue. It's called "The Private/Public Split in Breast Cancer Memoirs." It was written by a woman who came to my book launch in Toronto and asked for permission to speak in order to seek contributions - something to which I readily agreed. She also asked me to contribute to the issue, which prompted me to reach out to my writing group.

I had no idea that she planned to write a scathing deconstruction of my book - but that's what she did. I know that all writers get bad reviews but I found her comments to be very critical of me as a person (I guess you can't seperate the analysis of a memoir from its author) and quite unfair. 

I'm sure how to respond or react, or whether I should do so at all. I've actually been unable to finish reading the article. With a distinct lack of maturity, I threw the journal onto the living room floor and it stayed there for several days. I only just picked it up, in order to write this post.

I'll let you know what I decide to do. Meanwhile, I'm pasting my very own contribution below. It's a very small part of a greater whole (and not the strongest piece by the seven of us by any stretch) but it's mine and, like all my writing, expresses a little bit of what has been in my heart.

Snap shots

December 2^nd, 2005.

When I close my eyes, I see myself as I was then.

Short dark hair and boots with heels.

Irritable and excited in equal measure.

I knew big change was coming. And it did. But it was not what I expected.

I was getting undressed when I found the lump.

July 1^st, 2006

I close my eyes and see myself as I was then.

Round, bald and bloated. But happy.

Chemo is behind me. Or so I expect.

I am self-conscious but also hungry.

I eat two burgers at the barbecue.

December 24^th, 2006

I close my eyes and see myself as I was.

I rallied for Christmas Eve but in the end the pain got the best of me.

My liver was riddled with tumours. And I had waited too long for the morphine.

My mother had to put me to bed. That comforted me.

And so did the drugs.

June 25^th, 2007

I close my eyes and I can taste

The strawberries on my tongue

The sensual pleasure of the whipped cream

And the Niagara ice wine as it slid down my throat.

I knew I would soon have something to celebrate.

December 16^th, 2009

I close my eyes so I can think.

I have now been in remission for 30 months.

And I will be in treatment for the rest of my life.

Some days I wake up celebrating.

Some days I grieve for what I have lost.

Today is a sad day.

Tomorrow will be better. Or maybe the day after that.

now this could be fun

I've written before about the one major limitation of Herceptin - that it doesn't cross the brain-blood barrier. A couple of years ago (after meeting several young women with metastasis that had spread to the brain), I underwent a brain MRI. To my very great relief, there was no evidence of trouble but I think I'll will be requesting another before too long.

A few days ago, my friend Deanna posted a link to Breast Cancer? But Doctor...I Hate Pink and to Ann's take on the news that Viagra may help Herceptin to (ahem) penetrate the blood-brain barrier and thus help reduce the size of brain tumours.

 As Anne tells it:

"Herceptin, the wonder drug, has a flaw: it does not cross the blood-brain barrier. The blood-brain barrier was erected designed by nature to protect our brains from dangerous substances, such as bad viagra jokes, but what it means for cancer patients is that certain drugs can't get through to kill swollen bad cells. Herceptin cannot treat HER2+ breast cancer that has engorged spread invaded the brain. Apparently, if you add a big large generous dose of Viagra to Herceptin, it adds enough thrust power to break through that blood-brain barrier and bathe the brain in its heaving healing properties."

It's seriously interesting news but go read Ann's full post. It will make you laugh.
 
Cross-posted to Mothers With Cancer.

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.

10 in june part one: health

The last month has been challenging, as far as my health is concerned. There is nothing seriously wrong with me and as far as the cancer is concerned, I'm in fine shape. Instead, I've been dealing with some unpleasant and uncomfortable digestive issues. Whether this is due to my age or the toll of long term systemic cancer treatment, I don't know. I just know that, by the time I went to see my doctor, I was feeling prettty miserable.

I suspected my gall bladder was the source of the problem but we had the benefit of a recent abdominal CT scan that showed that organ to be fine. My doctor diagnosed me with Gastroesophageal Reflux Disease (or GERD) and instructed me to stop consuming coffee, tea, chocolate or coffee (my immediate response was the somewhat ironic, "I'll die!" She also gave me some medicine. 

After a couple of weeks, I do feel very much better. I've only been eating tiny amounts of chocolate and I have had a couple of pints of beer (which didn't seem to bother me). What does turn my innards inside out is coffee, something I find to be fairly tragic. I'm now drinking a mug of Matcha green tea every morning and then, only occasionally having a single mug of half-decaf (and I am coming to accept that this needs to be a pretty occasional thing). 

I was feeling pretty bummed out about all of this (haven't I already been through enough?) until one day I was out walking the dogs and I got to thinking. What if I chose to look on this as an opportunity to clean up my diet?

I've also come to realize that fatty foods or eating anything too quickly can give me pain and heatburn. But I should be avoid junk food and mindless eating anyway, so that shouldn't seem like a bad thing.

When life gives you lemons, make lemon water (which also really helps with digestion and I like how it tastes).

Next visit to my doc, I'm going to risk being labelled a hypochondriac and ask to be tested for Celiac's disease (my sister has it, and although I've had the blood test, I know that it can result in false negatives) and also asked to be tested for a stomach bacteria called H. pylori (because a friend just tested positive and really I am a bit of a hypochondriac.

Keeping all those things under consideration, here is the part of my "Ten Things" to do list that addresses health:

1. Make soup twice. I've been having fun on this soup adventure. I've already made chicken soup this month. What surprised me though was that I took a recipe from my nutrionist and altered it significantly to make it more flavourful. On the heels of my made-up cabbage soup from last month, I am displaying a willingness to depart from recipes that I have never been brave enough to do. It pleases me enormously.

2. Do an average of sixty minutes of cardio five times a week (a total of 300 minutes a week). 

3. Start the Running Room beginner program and run/walk three times a week. I'm on track and on week two, which means I'm alternating one minute of walking with one minute of running for twenty minutes.

4. Follow the diet prescribed by my nutritionist, while cutting mysellf some slack (ie letting myself have a cookie or a piece of chocolate every day, eating exactly what I want once a week, cutting down on carbs and increasing fruit and especially low sugar veggies). If my approach isn't moderate, it's not sustainable.

I'm putting the strength training on hold in the hopes that July will be a little less busy and my gut will be healed enought that the thought of sit-ups doesn't make me puke (although I'm not sure if this is a real problem or just a dislike of sit-ups).

I'll save the rest of this month's goals for another post. What's on your to-do list for June?

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.

how it's done

Everyone makes mistakes. And sometimes things go wrong that are not anyone's fault but someone has to take responsibility for making things right.

Over the last couple of years, I have come to realize that this is a deeply held value of mine, one I am trying to share with my kids. Mistakes don't necessarily make me angry but I can get royally pissed off profoundly annoyed when anyone - adult or child - tries to shirk responsibility. On the other hand, when people step up, acknowledge their mistakes and make a genuine effort to make things right, my resentment tends to evaporate entirely.

Some examples:

1. A few weeks ago, a received a notice from the Ottawa Public Library that a digital book I had ordered was ready for download. The same day, the library's new web site went live. When I tried to download my book - one I had requested months before - I found that all my requests had been deleted from the library site.

I was extremely disappointed. I immediately (and without much hope) sent an email to the library's tech department. The next day (a Saturday), I received an email informing me that they were aware of the problem and attempting to fix it. I was impressed with the rapid response.

The following Monday, I was sent another email explaining what had happened and that the problem had been fixed and informing me that I would be put to the top of the list for this book.

I was thrilled.

2. Last week end, my family ordered takeout from the Foolish Chicken. We have eaten there many times. Every experience has been extremely positive. This time, however, there was a mistake with our order.

We had ordered a ceasar salad with our family meal. When T. went to pick it up, he was asked if ours was the order with the ceasar salad and had confirmed. When we opened the boxes at home, though, we had a green salad.

I was tempted to let it go (the salad looked just fine to me) but S. had really wanted a ceasar salad, so I called the restaurant. My call was immediately transferred to the owner. He apologized profusely, explained what had happened (an order that was virtually identical - but for the salads - had gone out at the same time) and said that if T. were willing to come back and get the right salad, he would throw in some free dessert.

We were thrilled.

3. As I wrote in yesterday's post, I have asked for and received permission to cancel my chemo and herceptin treatments for April. However, when I arrived at the cancer centre last week, I discovered that my treatment for March had inadvertently been cancelled as well.

I went ahead with my bloodwork while staff attempted to figure out what had happened. Each person with whom I spoke (the staff on reception and the nurse who was trying to contact my doctor) made me feel as though they were working hard to get things sorted. A short while later, the woman who does the chemo bookings (someone I know to be extremely competent and accommodating) came to find me in the waiting room. She admitted, in front of a room full of people, that the mistake had been hers and that she had corrected it.

I was both relieved and impressed.

4. When I had my treatment that afternoon, the nurse administered the vinorelbine (the chemo drug, known in the US as Navelbine) right after the Demerol and Gravol (US readers know this as Dramamine). I promptly fell asleep. I woke up more than an hour later, thinking it would soon be time to go home.

Then the nurse came to hang my Herceptin, which takes ninety minutes.

Since the vino only takes ten minutes, I wanted to know what had been happening while I was sleeping. The nurse (not the same one who'd set up the vino) just shrugged and looked at me like she didn't understand the question.

I was too stoned and tired to push matters but I'm pretty sure that they'd just forgotten about me for a while. No one tried to explain or apologize and I was inordinately annoyed.

Mistakes happen. How we deal with our mistakes is what matters.

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.

you can't always get it

Mixed results from my appointment with my oncologist yesterday.

First of all, I was late. As I was riding to the hospital, I noticed that it was getting harder and harder to pedal. When it actually became impossible, I got off the bike and checked. My front brake was squeezing the front wheel. Hard. I think I had been riding like this for some time - and tightening every time I braked. I just thought I was tired and out of biking shape. I solved the problem by releasing the front brake entirely (I'm sure that's not the safest thing). This meant that when I hit the big hill before the hospital, I was already wiped out from pedalling with all that friction.

I arrived at the cancer centre twenty minutes late and a hot, red, sweaty mess.

When I finally saw my doc, he easily agreed to a break in July (which is a good thing because I have non-refundable air tickets and a pre-paid hotel for BlogHer). That went so well that I (without making eye contact) asked for August off as well.

The answer was an unequivocal "No."

I didn't argue with him and I listened patiently as he reminded me that I need to think in terms of a chronic illness that we need to keep treating. I can't really take a (longer) break because we need to keep managing the illness.

I told him that I understood. That I know that the treatment I am on is our first line of defence and that the longer I stay on it, the more chance there is for the second, third, fourth and fifth lines of defence to be developed and improved.

He said, "Well, that makes me feel better. When I saw the note in your chart [that I wanted to ask for two months off], I got a little worried."

I reassured him that I am not planning to bail on treatment, I'm just feeling ground down and fed up.

Dr. G. also reminded me that, "Although, it's great that you have remained with no evidence of disease for so long, there is likely cancer somewhere in your body. Statistically, there is something there." But then he added, "But we don't know enough about Herceptin in the long term. Maybe you're cured. We just can't know."

"Cured." Nice word, that.

And I get it. I really do. And I know that while I was incredibly unlucky to end up with metastatic breast cancer (especially in the liver), I have been fabulously, gloriously fortunate to end up in remission. I know so many other wonderful women (Jeanne and Rebecca, for example) who have had to move to regimens that are harder to tolerate.

I can accept the fact that I will be in treatment for the rest of my life, with only very short and very occasional breaks. I can even make the best of it. And I can feel pretty positive most of the time. I think I am also allowed to get pissed off every once in a while.

On another note, my spouse wants you all to know that the Xmas tree in my back yard is "next winter's firewood." It hasn't been chopped, though. Maybe we are going to have a bonfire in my living room.

cash would be nice

The last time I checked in for chemo, I accidentally handed the receptionist my Subway card, instead of my green hospital card.

She thought this was so funny, that she showed everyone in the room. I pretended to be angry, trying to grab the card back. It felt good to laugh in that, sometimes sad, place.

I told her though, that my subconscious had been at play. I gave her the Subway card because I feel that after so many rounds of chemo, I should get some sort of bonus prize.

what if?

"We have all the tools to eliminate mortality from Her2 positive breast cancers in the next 10 years."

-Dr. Eric Winer, Director, Breast Oncology Centre, Dana-Farber Cancer Institute (February 28, 2009, 9th Annual Conference For Young Women Affected By Breast Cancer).

Her2 is a protein. And it fuels cancer cells. Her2+ breast cancers are always very aggressive and, had I been diagnosed before Herceptin was widely available, I am sure that I would not be alive today. Now, a whole host of new drugs are being developed to attack this breast cancer that affects primarily younger women.

Dr. Winer's words are among the most hopeful that I have heard in a long time.

And then today, I heard a story on the CBC about a man who is being forced to choose between taking an oral chemotherapy drug for his brain cancer or feeding his kids. It's heart-breaking.

And, I can't help but wonder, what if, when the Herceptin stops working, neither my government or my insurance company will pay for the next course of treatment? What happens then?

Dr. Winer also noted that 30-40% of all women with breast cancer metastases will eventually have the cancer spread to the brain. He told us that Herceptin doesn't pass through the brain and suggested that all women with metastatic her2 positive breast cancers have brain scans done every 6 to 12 months. Guess what I am going to be talking to my oncologist about during my next appointment? (Although, vinorelbine, the chemo drug I'm taking is sometimes used to treat brain mets. That's reassuring).

I hope this is making at least a little bit of sense. I have a raging head cold and am feeling pretty muddled. My spouse was laughing at me this evening, reminding me that I am always very stoic about the big things (like, say, having a liver the size of a watermelon) but a garden variety head cold turns me into a whimpering puddle of goo.

I guess I am reminded that, generally speaking, I am very healthy these days. And that, in itself, is very hopeful.

This brings me to my second favourite quote from the conference:

"The best predictor of doing well is doing well."

-Dr. Winer.

Cross-posted to Mothers With Cancer.

living with it

I have just come back from an echo-cardiogram appointment (I have regular echos to make sure that Herceptin isn't damaging my heart) or rather what I thought was an echo appointment. It had previouslybeen scheduled for Thursday, February 26 (when I was travelling to Dallas for the Conference for Young Women Affected By Breast Cancer) and I'd had to reschedule. I had entered the appointment (I use Google Calendar) for Friday, March 6 at 3pm. It turns out the appointment is for Tuesday, March 10th, at 3pm.

Since I was told about the appointment over the phone, I have no idea where along the channel of communication the mistake was made - as it came out of the caller's mouth, or as it went through my (increasingly sieve-like) brain. I guess it doesn't really matter, though (and next time, I will call to confirm).

I did find that it made me feel a lot better to get out of the house (both physically and mentally). Can you remind me of that next chemo cycle, please? I don't know why I am still figuring these things out.

I am still all aglow from the conference (even if I have been too tired to write about it). It was a truly supportive, joyful atmosphere, despite the shared circumstances of the women in attendance. I had been hoping to learn (and I did). I had been hoping to get a chance to talk about my book (and I did). I had been hoping to meet a few nice people (which I really did). I did not anticipate how very inspired and hopeful I would feel on my return. I am so grateful that I was able to attend.

There were some excellent sessions on practical and medical issues (I mentioned the session on nutrition in yesterday's post and I will write a post on Monday about the medical stuff) but also workshops and speakers that addressed what it means to live with cancer.

Here are some of the comments that resonated with me:

From Advanced Breast Cancer: Living With Uncertainty, a workshop led by Mary K. Hughes, a nurse who helps cancer patients cope with anxiety and depression-

• Instead of focusing exclusively on what we have lost, it is important to "find new meaning in what you can do."

• There is a difference between depression and the grief we all experience as women living with metastasis.

• People often tell us we are brave. We don't generally feel brave, just that we are doing what we need to do.

• It's hard to explain to people that we will never be "done with treatment."

• "Coping is temporary. Adapting is permanent." This is so true.

• Talking about our cancer "takes the power out of it. It's like deflating a balloon."

From Happiness In A Storm: Embracing Life Through And After Cancer, a keynote address by Dr. Wendy Harpham, MD, FACP and multiple cancer survivor, speaking about her own experiences:

• When she was first diagnosed with cancer, she had a busy practice and two kids. Cancer felt "like a storm had descended." I can really relate to that metaphor.

• A "healthy survivor" is one who gets good care and lives as fully as possible. Good health is a "wholeness of body and mind and not dependent on biology." Dr. Harpham advised us to "make your life the best it can be, whatever the circumstances."

• Minor discomforts (hello lymphedema!) can be an obstacle to happiness. She called it "the rubber band syndrome."

• Unpleasant emotions can be "the signal of a problem or the response to a problem." They can sometimes be used "in healing ways."

• "Anger and grief have a purpose."

• "It matters less what you feel than what you do with what you feel."

• "Live until you die." I know that sounds obvious but it is easy to lose sight of the living when all you can see is the illness or the ways in which your life has changed.

• Strike a balance between hope and acceptance - "hopeful acceptance."

• "Setting the stage for hope is a choice."

• "A prognosis is not a prediction."

• "Little problems have become trivial. The ordinary has become marvelous." I have written about revelling in the mundane.

• "Even the hard stuff reminds me that I am alive."

• On communicating with kids - "open the lines of communication and tell the truth. The greatest gift we can give our kids is not to protect them from the world but to give them the skills to deal with what life deals them."

As someone who lives with metastatic breast cancer, I will be in treatment for the rest of my life. I am also in remission and live a full and happy life, despite the challenges I face. It was so inspiring to be around people who really understand this.

The women pictured above were among the nicest I met this week end (the two at the back are from Boston - the same two women I was too shy to approach at the Chicago Airport!) the two in pink are from Orange County and I met them at the cocktail party on the first evening. And then it turned out they were all friends. They enveloped me in their little circle and it made my experience that much better.

the day my life changed

I had an echocardiogram today. They are a pretty routine part of my life; I have them every few months to make sure that the Herceptin isn't damaging my heart. So far, so good.

It's kind of boring lying there, so I started to play a little game with myself. When I lay down at the beginning of the test, my resting hear rate had been 65 bpm (beats per minute), when I worried about my results, I noticed that it had shot up to 75 bpm (I could also see on the screen that my heart was whooshing away but I couldn't tell whether it was doing it's job efficiently). I took a few deep breaths and my bpm dropped again. I remembered that I have only bought one Xmas present and my rate went back up into the 70s. Up and down it went (I hope that I didn't affect my results by doing this).

And then it occurred to me that today is December 2nd.

Exactly three years ago, I found the lump in my breast. That day, the world tilted on its axis (I felt it do that as I stood in front of my bedroom closet not quite believing I had this big hard mass on the side of my right breast) and my life was irrevocably changed.

If you had told me at that moment, how the next couple of years would unfold, I never would have believed that life could be as good as it is right now, despite the cancer. Don't get me wrong. If I could choose to have never had cancer, I would.

I hate having cancer, hate being in treatment, hate the restrictions placed on me as a cancer patient and I do still grieve for all I have lost. There are many, many ways, though, that my life has changed for the better since December 2nd, 2005.

Maybe that's why, when I remembered the date, my heart rate didn't budge.

Whoosh! Whoosh!

Cross-posted to Mothers With Cancer.

how to decide if a drug is "worth" the cost?

I have a new post up at MyBreastCancerNetwork.Com.

Living With Metastasis: Avastin - How Do We Decide If A Drug Is Worth the Cost?

Here is an excerpt (the paragraph in italics is a quote from an article in the New York Times, to which this is a response):

...If a drug like Avastin can prolong life by, let’s say four months, is it worth the cost? I know what my kids would say. Also, what exactly does it mean when it is said that patients in a clinical trial ‘lived four months longer’? I always return to Stephen J. Gould and “The Median is not the Message” when I need to be reminded that statistics do not always provide the clearest picture.

“Gailanne Reeh remembers what life was like within a few months of those initial scans, when her cancer began causing terrible symptoms.

Her abdomen grew so full of fluid that it was hard to bend to tie her shoes. Bowel movements were difficult, and even lying down was uncomfortable with that huge mass in her abdomen….After six months of treatment the fluid in her abdomen was down to just a trace, her tumors were stable or smaller and she felt like her former self again."

Quality of life is incredibly difficult to quantify. However, I am struck by how the symptoms described above are so similar to my own when the metastasis was diagnosed. The pain was excruciating. And to have those symptoms be alleviated eased not only the pain but the terror I had been feeling as well.

In my own case, as with Ms. Reeh’s, we cannot be sure how much of the improvement was due to the breakthrough drug, the chemotherapy that accompanied it or the combination of the two (although my oncologist believes it to be the latter). The relatively new and expensive drug in my case is Herceptin.

You can read the rest of this post at MyBreastCancerNetwork.Com.

cancer is a chronic illness

My father-in-law, himself a cancer survivor, sent me a terrific article from the New York Times:

"Cancer as a Disease, Not a Death Sentence"

That about sums it up, for me.

I particularly enjoyed the following anecdote, so reflective of my own experience (the drugs are different, except for the Herceptin):

''Dr. Esteva described a breast cancer patient first treated with a mastectomy and the antiestrogen tamoxifen in 1995. Five years later, cancer had spread to her lungs, prompting treatment with a newer anticancer drug, an aromatase inhibitor. When that no longer worked, her cancer was found to possess a molecular factor, HER-2, and she began treatment with Herceptin, a designer drug tailor made to attack HER-2-positive breast cancer.

Herceptin therapy was able to stabilize her metastases for years, “something we had not seen before,” Dr. Esteva said.

The patient now receives a combination of Herceptin and another drug and enjoys a relatively normal quality of life, the doctor reported.''

The article describes beautifully the approach of my oncologist. First treatment A is tried until that stops working, then treatment B and so on. Ideally, treatment would continue in this way until a cure is found . For the time, being, though many of us are living longer than anyone thought we would and with a pretty good quality of life.

Cross-posted to Mothers with Cancer.

teaching and learning about persistence

Part One (in which running is harder than walking)

Yesterday, my oldest son and I went running.

He is a couch potato and I want him to get fit and get moving.

I used to be a runner but stopped shortly before my surgery in 2006 and have not run since.

S. balked at this proposal at first but I stood firm. Then we saw Run Fatboy Run and he came around (he adores Simon Pegg. And the 'slacker turns long distance runner and gets the girl' theme really appealed to him. Whatever works, I figure).

We did Week One of a beginner's run/walk programme. We ran for one minute and walked for two minutes for a total of twenty minutes (we also did ten minutes of walking to warm up and cool down on each end). Even though I walk almost every day (and sometimes quite briskly), I really felt it (I was also running in a pair of really crappy old shoes which I threw in the garbage when I got home). It's hard to imagine that there was a point in my life when I was able to run for more than an hour and that I once finished a half-marathon.

And S., who had started by saying that he can walk faster than I run (which is true), was panting pretty hard at the end and asking "are we done yet?" Every few seconds.

Still, we both agreed that it was hard work but not overwhelmingly so (I even think that S. was a little proud of himself) and that we would keep at it. I told S. that I expect him to finish the programme with me (in ten weeks we will be running for twenty minutes in two ten-minute increments) and then he will be off the hook.

By then, I am hoping that we will both be addicted.

He was asking yesterday about running a marathon. I think it would be fun to do a 5k together.

We'll see.

On Friday, we will go out and do it again.

Part Two (in which I am pretty)

It was well past D.'s bedtime last night when he asked if he could 'do' my hair. I couldn't resist.

Ever since I was a little girl, I have loved having my hair brushed. This hadn't happened for a very long time. My hair hasn't really been long enough for years and when it was, there wasn't anyone in my life who was interested in brushing it.

D. set to gently brushing (he was standing on the bed as I sat on it). As he worked, he would make comments:

"Tell me if I hurt you."

"S's hair tangles because it is curly."

"Your hair is like mine and S.'s is like Papa's."

"In the light, your hair looks golden."

and

"I like your hair, Mama."

After brushing, it was time to add some adornments. We both loved the end result:


I have been growing out my hair since it started growing back after the Adriamycin. What you see is the result of almost two years of persistence (I am sure that the current treatment regimen has slowed progress, too).

Recently, I have been thinking of giving up. I had very short hair in the months before my diagnosis and I keep coming across photos of myself with short hair in which I think I look pretty good.

But after last night I don't want to cut it any more.

And I've invested in all these cute little clips. Who knew I could wear them all at the same time?


Update on my heart situation: I just got off the phone with my oncologist. He's not really worried about the drop in my ejection fraction. We're going to proceed with next week's treatment as planned and he is going to book an echo cardiogram for me and see if it gives the same results.

People who would know have been advising me that such tests can produce inconsistent results and it seems that my oncologist agrees.

Cross-posted to Mommybloggers.

thumpity thump (or rather, whoosh, whoosh)

Last week, my appointment with my oncologist was cancelled. Apparently, he was very sick with a high fever. Having a cancer patient's selfishness, my first thought was, "Oh! It's good that I won't be coming into contact with him then!" Then, my more empathic self remonstrated and I wished him well, poor man.

The nurse who works with him was kind enough to confirm my CT results. The tech who did the scan (or rather her radiologist boyfriend) was right. My scan was clean and there is still no sign of cancer on the liver.

However, the nurse also told me that my heart scan revealed that my ejection fraction (the measurement of my heart's ability to pump blood) was down to 48%. Fifty-five per cent is considered normal (before I started treatment, my EF was 56%), so this is not as bad as it sounds. It is however, a fairly significant drop and likely an indication that the Herceptin is putting a strain on my heart (a common side effect of this drug).

This is not the first time this has happened. Adriamycin (the 'red devil') was also very hard on my heart, so we waited a couple of months to start the Herceptin, in order to give my heart a chance to rebound.

According to my oncologist, it is easier for the heart to recover from Herceptin than from Adriamycin. We've discussed the possibility of taking a break from Herceptin (while continuing with the chemo) if damage should occur, so I am confident that this is what he will suggest when I speak to him tomorrow.

I am really reluctant to stop the Herceptin, since it has worked so well for me. There is a voice in my head (one of several. You have them, too. Don't lie) yelling, "Don't mess with what's working!" But the truth is that it's not working if I need to start taking heart medication or worse, end up with heart failure.

So, if my oncologist suggests doing chemo only for the next couple of months, I will agree (what choice do I have?). I will wait for my heart to rebound (it's weird because I don't feel any different, really).

But I am just a little nervous.

And chemo won't be as much fun without the Demerol.