generation gap

On Tuesday, as I waited at the Heart Institute for my regular echocardiogram, I had the following brief conversation with the older gentleman sitting beside me.

Me: Is that a Playbook?

Him: I don't play! This is an ipad!

Me: Oh. I was just curious about the Blackberry version of the tablet.

Him  (scornfully): Do you have a Blackberry?

Me: I do.

I didn't bother explaining that I don't find touch screens to be intuitive and that I prefer an actual keyboard for sending emails and texting. Instead, I pulled out my knitting, thus eradicating all doubt that I was the Luddite in our conversation.

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 do run on

The echocardiogram was fine, the doctor found nothing unusual when she examined me, my butt is sore today from all the biking, the technician got the vein on the first try before the ct scan, I will have results in about a week, I got to go on a great walk with my sister today, my kids and spouse have just left on a two night canoe trip and this evening, I am going out for a grown-up dinner.

Life. Is. Good.

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.

more randomness

1. I forgot to mention that my new-found commitment to riding my bike (spent a couple of hours on it again, today, although some of that was getting lost) was inspired in part by Rebecca. She trained on her bike (and kick-boxed!) right through breast cancer treatment.

2. It was also inspired by the fact that I dropped a whack of money (in violation of our current austerity measures) on a fancy lap-top bag that attaches to my bike rack. I have to ride instead of taking the bus or a taxi, in order to justify it. The first time I used the bag, it flew off while I was riding on a busy street (now lap top in it, thank goodness). I have since figured out how to secure it properly (don't you love instructions that read like they have been put through a universal translator?). I spent almost two hours on my bike today. Some of that was getting lost. I have absolutely no sense of direction. I had to pull out my bike map many, many times and I still took a few wrong turns.

3. I had a routine echocardiogram today. The woman who did the test explained what we saw on the screen in response to my questions (she compared the mitral valve to a fish). We also chatted about a bunch of stuff. I have never felt so relaxed while being tested or had an echo go by so quickly. She also told me that all is well. This experience was in such stark contrast to others I have had that I found her before I left to thank her for treating me "like a person." I told her that it meant a lot.

4. My father in law pointed out to me the other day that the Amazon.ca link to my book had it classified under "astrology." That has been fixed.

5. Yesterday, I had to chase the puppy around to cut out something that was matted in her fur (don't ask). My 10 year old stopped me, patiently turned the scissors around and said, firmly but calmly, "Could you please hold the scissors properly, if you are going to run with them?" I know that sometimes children and their parents reverse roles. I just didn't expect it to happen so soon.

6. As I was riding to the hospital today, a car pulled up beside me at an intersection. The car's window was open and the guy inside was snapping his fingers and bopping along with a big smile on his face (it was "Dancing Cheek to Cheek." I think it was Ella singing but I'm not sure). He must have felt my glance , because he turned to me and asked, "Are we going to have a good day?"

"I am now," I replied, with a big smile on my face.

my efficient heart

I spent the better part of today at the hospital getting an echo cardiogram and seeing the oncologist.

The good news is that my heart is functioning just fine. It is most likely that there was never a problem and that the echo just gives a clearer picture.

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.