"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."

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.

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.

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.

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

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

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."

• 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."

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.

I have a new post up at MyBreastCancerNetwork.Com.

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

...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.

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.''

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.

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.

I have had two scans over the last few of days.

On Friday, I had a CT scan and was taken aback (but pleasantly so) when the technician informed me that she had checked and that there was no change from my previous scan and that there is still no evidence of cancer on my liver.

The events leading up to this conversation were a little outside the norm of what one should expect in a professional hospital setting, so I thought I would share them with you (actually, my spouse, when I told him, kept repeating, "You have to blog about this!).

I left for the hospital at around noon on Friday, still a bit woozy from the chemo and light-headed from fasting all day. I dodged construction in order to check in and seat myself in an unfamiliar waiting room. A few minutes later, I was handed two half liter cups with a clear liquid in them and told to drink them over the next hour and a half. "At around 1:30, someone will come and we'll get your iv started."

When, by 1:50, no one had come for me, I approached the front desk, where, once they clarified that I had in fact checked in and consumed my drinks, a man in scrubs (tech? nurse?) was asked about my place in the queue. He looked confused but said that someone would be along shortly, "They haven't forgotten about you."

Less than two minutes later, the same guy came to get me (which does lead me to believe that I had been forgotten). He led me back through the construction to a big room, with a few beds and two chairs in it for drawing blood. My guide gestured to the one empty chair and told me that a tech would be along shortly to set up the iv for the scan.

The two chairs in this room were extremely close together. The woman in the next chair and I were facing the same direction and could have put our arms around each other without stretching.

I had seen her come into the waiting room. She was young (anywhere from teens to twenties), wearing pajamas and an eyepatch. She also seemed quite weak and had been supported by the older (mid-forties? early fifties? I really go out of my way not to stare in these circumstances) man who was with her. Shortly after their arrival in the waiting room, they had been ushered out, around the corner and told that someone would be waiting to speak to them.

I don't know how long she had been sitting in the room where they usually do the blood work before I got there but within seconds of my arrival, a woman (who I later learned was a doctor) came through the door from the scanning room and began to speak to the woman and her companion in Arabic (I'm pretty sure it was Arabic).

They did not acknowledge me and there was nowhere for me to go. The doctor began to speak quickly, with the odd English word thrown in. I understood, "Ear, cancer, vocal chords." I also understood that there was a great deal of emotion in the room. I closed my eyes and turned my head away so that we could all pretend I wasn't there.

Within a few minutes, the door once again burst open and a diminutive red-headed woman called out my name. I was eager to leave but did take the time to say that I didn't have my iv in yet. "I'll do it in here," she barked (I didn't mention that for the last five minutes the fire alarm had been wailing in the background...)

"I brought you in here because there as a very hard conversation going on and I thought she deserved some privacy."

My eyes widened and I nodded vigorously.

"And you, too. It's not nice to be listening to that."

She then took down my particulars, prior to the test. When I told her that I was undergoing chemotherapy for breast cancer that had spread to my liver, she grimaced, "Then that conversation must have been particularly hard for you. My co-worker didn't realize what was going on when he put you there. You shouldn't have had to hear that, especially as a woman."

Bearing in mind that I hadn't understood much of the conversation and had been acutely uncomfortable, I remained mostly silent during this ongoing monologue.

Tech: "Did you have a lumpectomy or a mastectomy?"

Me: "Mastectomy."

Tech: "Good! I used to do mammograms and my fiancé works at (a clinic that women go to for diagnosis of breast cancer). You could say that breasts are our life. Other than the fact that I have two."

Somewhere in the blur that followed she asked and I informed her about my initial diagnosis, the mets and how my liver had originally been "riddled with tumours" but that I had had three clean scans (with no signs of cancer) in the last year.

She was duly impressed.

A few minutes later she asked, "Doesn't breast c.a. usually spread to the brain or the bones?"

Me: "It can also go to the liver and the lungs."

Tech: "Liver, then lungs."

Me: "Liver or lungs." (I didn't have the energy that mets can manifest itself in other ways, too, such as skin cancer.)

By this time she was tapping on my arm, getting ready for the iv injection. "Do you usually have good veins?"

Me: "No." (Veins tend to shrivel up and collapse when you are undergoing chemotherapy. The cost of this has been driven home to me quite graphically)

Tech: "I'll get you the first time. I'm the girl they always go to when they have trouble getting a vein."

Me: "Then you're the girl I want to be doing this."

She trussed me up with two tourniquets and did it in one go. I was impressed.

Me: "That's awesome!"

Tech: "Thanks! It's because I like doing it. I am a sick, sick woman."

Me: "You are sick!"

Tech: "I also like giving barium enemas. No one understands that. But wouldn't you rather have someone who likes doing it give you your enema?"

And with that, she set up the iv, explained the procedure and left the room so that I could be scanned.

When it was done, I heard her voice through the intercom, "You can relax. I'm just going to take a look at your films."

A few minutes later, she came in to unhook me from the iv. While she was doing that, she said, "To make up for what we put you through earlier, I had my fiancé look at your films and there is no change from last time. Isn't that great?"

I thanked her and said that it was. I think she was a little disappointed that I didn't react more effusively but I was too stunned, overwhelmed and light-headed (I had not eaten anything since the night before, nor had I had any caffeine).

She ushered me out a side door and I stumbled outside the hospital to wait for my friend D. to come and pick me up. I also called my spouse to give him the news.

This is the first clean scan that we haven't celebrated. This is due, in part, to the fact that I was still feeling pretty lousy (post-chemo) on Friday and partly to surprise (the import of this news didn't really sink in for me until I was out for a walk on Sunday afternoon).

However, I do think that we might be entering a place where we assume that my scans will be clean and that I am continuing to respond well to treatment. And I don't think that's a bad thing.

This morning I had another kind of scan, to make sure that the Herceptin isn't damaging my heart. I won't have the results for a week or so. I'm not too worried. But I am covered in some spectacular bruises along my right arm and on my hand.

I had chemo and herceptin yesterday, along with a serious dose of Demerol to keep weird reactions at bay (apparently, I am "special". There are a handful of other women who get the herceptin over 90 minutes or an hour, instead of 30 minutes but I am the only one who gets a regular dose of a heavy duty narcotic to go along with it). I did do some pretty weird twitching, though, so I doubt we will be eliminating the Demerol any time soon.

The third part of my S.M.A.R.T resolutions involves getting my life organized, a subject that tends to make me want to dive for the covers. We have more clutter in our house than anyone I know. Than anyone I have ever visited. There are piles everywhere and one room we can't even go into because there is so much junk. And all too often, we end up buying things (does anyone have any idea what happened to the electric pencil sharpener?) to replace things that have gone missing, only to find them a week later (um...why are there pencil shavings in the bottom of the laundry basket?).

I've had enough (and no, this is not the first time I've said this).

But I have decided, in order to actually get anything done, I need to keep my goals modest. I also need to get a sense of accomplishment, the chance to throw some stuff out and the feeling that we can maintain the order I manage to create (she begins to laugh hysterically at the mere thought of this).

So. My goal for January? Clean out the fridge, freezers and cupboards. I have already done the fridge (Sort of. We still have many, many condiments of uncertain vintage that I was not permitted to throw out). I have fifteen days left and some of those will be slowed down by chemo, which means that next week, I've really got to roll up my sleeves.

I'll let you know how it goes.