progress and next steps

I had an MRI a couple of weeks ago and got the results last week. There has been slight progression in all three tumours in the brain.

That's the bad news.

The good news is that there are no new tumours and that my spine and cerebrospinal fluid remain clear, with no detectable cancer. This means that the Herceptin must be doing something for things to be progressing relatively slowly.

We just have to figure out how to make it better at its job.

There is very little research, when it comes to leptomeningeal disease (or leptomeningeal carcinomatosis), so in lots of ways we are making things up as we go along. The first thing we are going to do is increase the dose of Herceptin and to try and slow the drug down as it enters my brain.

At tomorrow's treatment, we are going to increase the dosage from 60mg to 80mg. The Ommaya Reservoir only holds 60mg and at the end of treatment, the oncologist usually empties it by pumping (really just pressing down on it a few times). Tomorrow, once it is empty, he will add another 20mg and let it drip down over time into the brain.

The next step (we have not determined when) will be to add methotrexate. Herceptin has been shown to be more effective when used in concert with a chemotherapy drug and methotrexate has been shown to be safe for intrathecal treatment (directly into the brain, either through the Ommaya Reservoir or a lumbar puncture).

You may have noted my use of the word "we". More than at any stage of treatment, this process has been incredibly consultative. My oncologist (and the one who replaced him when he was away) has discussed every option with us (Tim and me) and encouraged us to do our own research and bring it in. Since there is just not that much out there, we are trying to find what we can.

We've also discussed safety, liability (for everyone) and quality of life. At this point, I am not willing to go in more than once a week (or to feel sick all the time) nor am I willing to do things that are only in the initial phases of safety or as Dr. G put it "could fry your brain." These desires dovetail nicely with the hospital's and and my doctors', so we are not in a battle about resources.

Hopefully, more things will be available, once we have tried these next steps. When I am sad about how much life has changed for me, I remember that these last few months have been a sort of gift. As my oncologist says, I am "not supposed to be here."

I'm mostly comfortable sitting in this place. I live in this body, so I am not surprised by this news. I want to stick around as long as I can but I also want this time to be happy. It's a delicate balance.

the wisdom of my therapist

I've been seeing a therapist for a couple of years and, at this point, she knows me really well. I honestly don't know how I would have lived through the last couple of years without her and only wish I had started working with her sooner.

I've been thinking of some of the things that I have learned from her.

Patients who advocate for themselves have better outcomes. My therapist used to work in a hospital and this is something she learned then. I find it very comforting, especially as I make call after call to make sure I get the information I need to know how I am being treated and why. I feel so much better when I know what's happening. It's good to know that studies bear out my gut instinct.

It's almost impossible to have a panic attack if you are breathing. In one of our earliest appointments, she had me stop talking and take the time to breathe deeply. I felt first impatient and then much calmer. I very often forget to breathe when I am stressed, or I breathe very shallowly, and if I remember to breathe slowly and deeply I immediately feel much better.

Pay attention to what your body is telling you. This is especially true if, like me, you tend to live in your head. As with breathing, it's easy to ignore a headache, tense shoulders or anxiety gnawing away at the stomach. I've had to learn that, somewhat counter-intuitively, ignoring these pangs does not make them go away. They need to be noted and even held up to the metaphorical light and examined. As she keeps telling me, the body and the mind are very connected. Not in the sense that you can will yourself better but if you pay attention, your body can be telling you that something is wrong or that you need to slow down and take care of yourself.

Talking about something, even your worst fear, doesn't make it happen. This should be kind of obvious but I think lots of us are guilty of not saying things out loud because we are on some level scared that we will make them happen. Of course this isn't true and talking about a fear openly can make it lose some of it's power.

every three months

Exactly how often should someone living with metastatic breast cancer undergo the tests that monitor our health?

These CT scans, ultrasounds and MRIs are inevitably nerve-wracking, expensive (even if we don't pay for them out of pocket) and sometimes come with a risk of cancer inherent in the test itself. Cancer patients waiting for tests results refer to being in a state of "scanxiety." 

It's impossible to describe what it feels like to wait for test results, unless you've been there.

And those of us with metastatic breast cancer go through it over and over again. It's brutal.

When you live with metastatic cancer, one of your greatest challenges is balancing potentially life-saving interventions with the quality of the life you're keen on saving. It's important to check often enough that you catch any change quickly but not so often that you spend your entire life waiting for tests, undergoing tests and then waiting for results. 

Because that can be paralyzing.

I was speaking to a friend last week who was considering delaying scheduled scans by a few weeks. She said that it  had been implied that she wasn't fighting the way she once had. This made me furious on her behalf, as I can completely understand her need for a period of sanity, when cancer isn't always at top of mind.

In my case, I have the advantage of being in remission and the disadvantage of having an un-protected brain. I know it could just be a matter of time until the next brain tumour. I want to be able to catch it quickly. I also want to stop living my life from scan to scan.

I currently have brain MRIs every three months, at the suggestion of my surgeon. My oncologist would like me to wait until I'm symptomatic but I just can't do that. I have symptoms all the time. Symptoms of brain tumours include headaches, irritability, nausea and clumsiness. Who doesn't feel any of those things from time to time? 

My last scan was April 10. On April 14 my lovely GP called me and opened with the line, "Want to hear the good news?" 

All is well and I can wait another three months until I go through all of this again. 

Or maybe I'll let it stretch to four.

that could have been me

Last week, I was very moved by an interview on CBC Radio with Newfoundland actor-comedian Andy Jones and his wife Mary-Lynn Bernard on the radio about the death of their son, Louis who "passed away by his own hand after a lengthy and brave battle with mental illness...age 28 years." (from Louis' obituary)

Despite pain that was practically palpable, Ms. Bernard and Mr. Jones have been doing media interviews across the country to shed light on mental illness and the very high toll takes on those affected and their loved ones. I was very, very moved by their story, and the brave decision they have made to share it. 

It brought back a very intense memory, part of my own ongoing struggle with depression and anxiety This is just one of my stories:

I remember crawling under the kitchen table in the house we were renting, turning to face the wall and pulling my knees to my chest. I wanted to make myself as small as possible. To disappear. To cease to exist.

I felt defeated and ashamed. I was a failure. 

After many, many months of pretending, hurting, numbing, self-disgust, suicidal fantasies and giving up on getting better, I had accepted a prescription for anti-depressants.

I can acutely recall the self-loathing I felt as I held the prescription bottle in my hand. I was disgusted that I was ill. Disgusted with the weakness of my will. Disgusted that I hadn't been able to just get better on my own.

Depression, as I experienced it, felt like a heavy weight on my chest and limbs. I could not fall asleep at night and then slept for most of the day. When I did get up, eating and dressing would exhaust me and I would sit in front of the television, hair and teeth unbrushed, flipping the channels aimlessly, not really watching. When I did have to leave the house on my own, I wanted nothing more than to be invisible. 

This lasted for months. I was 25 years old.

This was not my first episode of depression and anxiety (I started to wrestle with this in my teens) but it was the longest. And it was the first that did not seem to go away on its own. And so, in the end, I took the prescription. It took a few weeks and a change of meds (the first drug seemed to do nothing for me) and one day, as I was out with the dog, I realized that the fog had lifted. 

I wasn't euphoric. I didn't feel like a different person. I just felt lighter. And interested in the world around me. I felt better. I had hope. 

I'd like to say that was the day I stopped blaming myself for my illness but it wasn't. More than once over the next few years, I took myself off the medication that helps me stay healthy because I was ashamed to be taking it. I didn't know then that abrupt withdrawal can be very dangerous. One time, I actually got off a plane at a stop-over and went to a friend's house because I was so overwhelmed with the desire to harm myself. It took me years to realize that for me, the drugs help and there is no shame in taking them.

This is not to say that everyone dealing with depression needs medication (they don't). Or that everyone needs to stay on it (they don't) but I do, along with talk therapy, exercise, good nutrition and the support of the people I love. I have to stay vigilant and watch for the signs that I need to slow down and take care of myself.

It's only in the last couple of years that I've started to talk about my depression. When I worked, it was my deep, dark secret - onne I realize now I very likely shared with several of my co-workers. There are so many of us who live with mental illness and never talk about it.

My point in sharing all this is to let go of a bit of the shame and chip away a little at the stigma. Andy Jones said in his interview that "compared to people who do heart surgery, the mental health field is still in the 17th century."

Enough already. Mental illness runs in my family. I'm trying to teach my kids to take care of themselves, watch for the signs, seek help and to never be ashamed of who they are.

And we need to treat mental illnesses like any other. We need prevention, treatment and cure. 

Additional reading (otherwise known as some of my very favourite posts from writers who live with anxiety and depression):

"Depression Lies" by Wil Wheaton.

"Today and forever" by Jenny Lawson (The Bloggess).

"Adventures in Depression" and "Depression Part Two" by Allie Brosh (of Hyperbole and a Half)

"Depression. There. I said it." by Rachael Herron.


Update: This post was featured by BlogHer on April 4th.

reluctantly gluten free

Last fall, I got tired of feeling crummy all the time. I'm sure the fatigue and the gastrointestinal issues were exacerbated by the round of antibiotics I'd had to go on after my surgery but I just wasn't getting better. I needed to give myself a chance to heal.

In the spring, a cousin and her spouse had been on the Brown Rice Diet. Laura also happens to be a naturopathic doctor, so I had asked her about it at the time and got her to send me the info. It's not a diet in the weight loss sense of the word but more of an elimination of all potential allergens. For three weeks, the only grain I ate was brown rice. I ate chicken, fish and a bit of lamb but no other red meat and no shellfish. Alcohol, dairy, sugar and all processed food were also verboten - but I could eat as much of anything as I wanted.

At the end of the first week, I was ready to chew off a limb. Despite consuming lots of food, I was hungry and irritable. I almost gave up. Instead, I increased my protein intake and two days later I felt flat out amazing. I had tons of energy, no cravings at all (I sat in front of a table full of wine, chocolate and cheese at book club and sipped sparkling water, not minding at all). I lost 10lbs, which I'm told was water weight, as I let go of sugar induced inflammation.

At the end of three weeks, I reintroduced grains, like quinoa that don't contain gluten. I was fine.

I introduced bread and got sick. My son was also ill, so I decided it might be a coincidence, and that I should take gluten out of my diet and reintroduce it later.

I had no reaction when I reintroduced yogurt. Or cheese. I re-introduced gluten and got sick again.

Over the holidays (Chanukah, Christmas, New Year's...) I ate pretty much whatever I wanted. I felt sluggish, bloated and irritable and by the new year, was ready to eliminate gluten again.

After a couple of weeks, I didn't feel fantastic but I didn't feel terrible. Mostly, I was irritated that I couldn't eat gluten. I missed Tim's home-made bread. I missed the chocolate cookies from the Wild Oat. I missed beer. I started to wonder if there was a point to all the deprivation.

Then came Tim's birthday and I decided to make Too Much Chocolate Cake. And, after three weeks without gluten, I had a giant slice. Then I had another one the next day. And the day after that, I was  a mess. My distress was not so much gastrointestinal as emotional. I was irritable angry furious. I was depressed. I was in despair. It was awful. And then, suddenly, it was over. I felt fine again.

So the gluten is gone for good (Tim says that the scientist in him would love to give me a slice of chocolate cake, just to see what happens but, out of self-preservation, he thinks that would be a bad idea).

I'm still figuring out what it means to be gluten free. Sometimes, I'm surprised by how easy it is. Other times, I feel frustrated that it feels complicated.

I don't feel amazing.. To do that, I guess I'd have to cut out the alcohol, sugar and processed stuff. Maybe that's next but for now, I'll just try and keep it to a minimum.

the snake

Photo: Tiwago. Creative Commons. Some rights reserved. 

I was talking to a psychologist about anxiety a couple of weeks ago and he used a metaphor that I found to be very helpful in thinking it all through.

"Are you afraid of snakes?" he asked.

"No."

"OK. So imagine that I'm deathly afraid of snakes and one falls through the ceiling, as we sit here. What am I most likely to do?"

"Run out of the room."

"And what's likely to happen to the level of my anxiety, once I'm on the other side of the door?"

"It will go down."

"But next time I come across a snake, what will happen to my anxiety?"

"It will spike again."

"So imagine that you are somewhat of a snake expert. What if you reassured me that this particular snake was harmless? What if I stayed in the room and you showed me that it's just a harmless garter snake and that nothing bad happens when we stay near it. What happens to my anxiety then?"

"It would go down a little."

"And the next time, I come across a snake?"

"You'd still feel anxious but perhaps not as much."

"Exactly. It's not comfortable to work through anxiety but that's exactly what makes it lessen. And hopefully, in confronting your fear, you could eventually make it disappear. Or at least diminish to the point that it doesn't affect your ability to function."

This metaphor really, really resonated with me. I told my own therapist about it and she really liked it too. It's become a short form for us. I will tell her about something that scares me or that I'm hesitant to do and she will ask, "What's the snake in that story?"

"I'm afraid that it won't be good enough."

"I don't want to feel guilty or ashamed."

"I worry that I am uninteresting."

"I'm afraid that people won't like me."

It's been very helpful. And on my own, when I feel unreasonably anxious about doing something, I imagine the snake and how it really is not as bad as it seems.

Unless it's a rattlesnake and then all bets are off. What if the thing that scares you really is as bad as your worst fears? What if it's possible or even likely to happen?

That's the part I'm still trying to figure out.

Photo: Brent Myers Creative Commons. Some rights reserved. 

it's getting to me

The days are short and dark. It's cold and icy. And we've all been sick for weeks. I'm finding winter hard this year.

Yet I feel healthier today than I have in weeks. I need to get outside in daylight hours. I need to get moving.

I'm trying to develop a more positive attitude towards winter. Maybe I'll even grab my skates and go check out the canal. It's time to embrace winter.

Or maybe I should join a gym. Read a good book. Watch Netflix while I knit.

Or bury my head under the covers until it's over.

What do you do to cope with winter?

Update:

i want more

We've all been sick, these last couple of weeks. It seems that as soon as one virus leaves, another sweeps through. Or perhaps it's all the same bug. At the moment, I have a sinus infection that used to be a cold and my 10 year old has a fever that used to be an ear infection. We've been through a lot of facial tissue (my father worked for a subsidiary of Scott when I was a child. I try hard not to call them Kleenex).

I think that ill health is likely why the only resolution I've come up with is to check all our pockets before loading the washing machine. Raging head colds don't lend themselves to introspection.

But I have been thinking a lot about the kind of life I'd like to be leading and of the kind of change that's within my control. What it comes down to is that I want more. Not more stuff or more obligation, pressure, failure or shame. I want more love, more play, more laughter, music and creativity.

The tricky part is getting there. There are things I need to do to have more of what's good but I have to make sure I don't fall prey to what's bad. Exercise is great for me but instead of beating myself up for not racking up the minutes I've set as an arbitrary goal, I can go for a walk. Writing feeds my soul. Except when I'm stuck. Then, I can pick up my journal. Or my knitting. And if I get sucked down the rabbit hole that is the internet, well that's OK too. I can always do things differently tomorrow.

I think I'm trying to say that there is a corrollary to "I want more" and that's "Be nice to yourself." So I guess those are my resolutions for 2014. It hope it still makes sense when the cold dope wears off.




It was only after I'd drafted this post that I remembered that Lynn Miles said it before me and best.

This song is from the album "Downpour." I've bought it 5 times so far and you should too.

books are my friends

I have struggled with insomnia occasionally in my adult years and much more frequently since my first cancer diagnosis. I don't know if it's my age, the years of chemotherapy and side effects, my old bed or things that go bump in the night but I very often wake up between 3:00 and 4:00 and can't get back to sleep, no matter how much I toss and turn.

I've learned not to look at my phone or turn on my computer. There is something about the back-lit screens that jolt me further awake, making it impossible to get back to sleep before dawn. And lying in bed, trying to will myself back to sleep just adds to my frustration.

I've started to keep a book-light on top of whatever novel I'm currently reading by the side of my bed. When I sense that sleep is temporarily hopeless, I read until I feel that it's worth it to take another crack at sleeping. Sometimes this is a couple of chapters. Sometimes it's a couple of hundred pages.

Reading is so soothing. It distracts me from worries of inadequate sleep and doesn't let me indulge the fear and anxiety that thrives in the middle of the night. And when I read at night, I feel none of the guilt that can accompany daytime reading that voice that says I really ought to be doing something more productive.

Last night, I read "Saints of the Shadow Bible" by Ian Rankin. I started it before bed last night. I'm now on page 150. I know it would be better to be sleeping more. I've cut out afternoon caffeine. We're trying to figure out how to afford a new bed, after 17 years.

I could write a book on what to do to cut down on insomnia. For now, though, I'll just appreciate the joy of reading one.

learning to breathe

Last year, when I was diagnosed with a brain tumour and went through surgery, I was fine.

I mean, the surgery was brutal and recovery was excruciating but emotionally, I was mostly OK.

A year later, except for the back of my head (which is a little bit sensitive), I'm fine physically but the emotional part has become more of a challenge. In the last few months, it's become clear to me that I'm only going to work through it all with a little outside help.

So, I'm seeing a therapist. I know it's the right thing to do and I like and instinctively trust the woman I'm working with but it's not easy at all. 

We've talked about how all my life, I've been pretty good at getting along by stuffing a lot of my fear and anger into an emotional closet. This has, for the most part, been a remarkable coping mechanism. However, no door is completely effective at shutting out the bad stuff and, when it leaks out through the cracks, it manifests itself in ways that can take a very large toll on the body and spirit. At this point in my life, my emotional closet is so full of anger and fear that the door is in danger of bursting wide open. 

I'm afraid of losing control.

I'm embarrassed and ashamed that some of it is so ugly.

I'm scared of taking my darkest thoughts and holding them up to the light.

But I think it needs to happen.

I've also been thinking a lot about how I live most of my life in my head, to the point that I'm really quite disconnected from my own body. At my very first session with my new therapist, she pointed out that when I talk about my fear of another tumour or about certain things from my past, I hyperventilate. And I don't even notice.

She spent most of the second session interrupting me and telling me to take deep breaths, hold them and then exhale slowly. She asked me how I was feeling and I said "Impatient."

What I thought was "I'm paying all this money per hour, so I can sit here and breathe? I can do that at home."

Except that I don't. So she's given me homework. I have to spend two minutes a day, twice a day concentrating on my breathing (we started with four minutes but it felt like an eternity).

In.

Out.

Just taking in oxygen. It's so basic. Yet here I am, 46 years old and learning to breathe.

Hallowe'en re-cap

A few days before Hallowe'en, parents received an email stating that, while dressing up on October 31st was encouraged, costumes could not include "weapons or blood." This was Daniel's quick solution.

Apparently, everyone at the school was fine.

Every Hallowe'en at our house begins with carving.

Our pumpkin wore a knight's helmet, to complement the evening's costume.

Don't let the serious face fool you. He was thrilled.

And I got to bemoan the fact that I had my child's "blood on my hands."

Even Lucy got in on the fun, albeit reluctantly.

And the biggest news of all? 

constant correction

"Balance is a process of constant correction."
-Guy Forsythe, "Balance" from the Freedom to Fail

Terry Arnold (@talkIBC) reminded me of the Guy Forsythe song last night during a weekly Twitter discussion of the Breast Cancer Social Media group (#bcsm) on Twitter. These chats happen every Monday evening but the conversation is ongoing. I often forget about the chats but when I remember (or, more often, am accidentally reminded), I love every moment. When I start to chastise myself for spending too much time online, I am reminded of  how much support I find there - across distance and difference. We "get" each other.

One of the threads last night was about seeking balance, a subject near and dear to the hearts of many of us but especially to those who are recovering from or living with chronic illness. When is it right to push ourselves and when is it best to slow down?

Feisty Blue Gecko shared a post about "Seeking Balance" that deeply resonated with me, as I try work my way through my September to-do list, without forgetting to notice all the good (and not so good) happening around me.

It was a great discussion as always but it wasn't until this afternoon that I took the time to follow the link Terry posted and listen to Guy and some of his band, singing "Balance."

I was reminded that I literally stumbled into the audience listening to Guy at last year's Ottawa Folk Festival, on my way to another stage. I was immediately mesmerized and didn't leave until the concert was over.

It was pouring rain when Guy began what has become one of my favourite songs. As he sang the words from the chorus, "You can't change the world and you can't change the weather, the best you can do is make the most of today", the sun came out. It was a perfect moment as I stood there, acutely aware of my beautiful life.

Tomorrow, my mother is coming for a visit. I need to get to the cancer centre lab to get bloodwork done this week. Thursday is parent-teacher night at both my kids's schools. On Friday, I go to Halifax for a few days (starting with the Advocacy Training, hosted and organized by the Canadian Breast Cancer Network). I get back Monday night and have a surgical procedure to replace my portacath the next morning and Herceptin treatment that afternoon. The day after that, I need to organize the milk orders that have come in at my son's elementary school. That Friday, the home care nurse will come and remove the needle from my new portacath (they leave it in for a few days) and I'll head to Toronto. We'll spend a day getting ready then, I'll head to my friend's cottage in Northern Ontario.

That's just my September.

And that list doesn't even include the banal things from my to-do list that need to get done in between each of these things. Or doing the things that keep me whole, healthy and sane.

Some things just aren't going to get done. Others won't be done as thoroughly as I'd like. I'll try not to think of it as dropping the balls, just allowing them to fall, gently. Someone else can pick them back up or I'll deal with them later.

So much of what's happening in the next little while will be memorable and enjoyable. I need to remember to breathe deeply, look around me and take it all in. I have a feeling there are a few more perfect moments coming. It would be a shame if I missed them because I was too distracted or too worn out to really be there when they happen.




 You can order the Freedom to Fail from Guy Forsythe. I bought it last year at the Folk Festival. It's one of my favourites. I think I'm going to go listen to it now.

and then all this happened

As our story left off a couple of days ago, I was grumpily bracing myself to go through one more test and then dig in my heels when it came time to make a decision that was right for me.

Aren't there dozens of aphorisms about paths being full of twists and turns? That's certainly how it went for me, yesterday.

The day before my appointment, the port-team coordinator called and asked if I would mind moving my appointment up from 12:30 to 12:00. Despite the fact that I was going to have to skip an exercise class, I agreed easily - in part because I didn't mind an excuse to miss the class, partly to be accommodating and partly because I had lunch plans and I wanted to get them as early as I could.

The next day, I arrived for my noon appointment. There was a single receptionist on duty in the busy X-ray unit in which the port team is housed (Module X at the General for any Ottawa folks). I got in line, checked in and was directed to take a seat while I waited to be called.

After 40 minutes, I decided it was time to check in again with the receptionist (at my previous appointment, I had patiently waited for an hour. The receptionist suspected I'd been forgotten and someone did come to get me suspiciously quickly after I checked back in). She called the port team. No one answered the phone. The receptionist took my info and said she'd keep trying.

At 1:30pm, fuming over the fact that I'd actually been asked to come in early, I queued again to see the receptionist. Looking surprised to see me, she picked up the phone and then put it back down, "I'm just going to check what's going on. You've been waiting a long time." She apologized to the line-up of people behind me and disappeared down the hall.

A few minutes later, she re-appeared, shaking her head. "There's no one there."

I must have looked as angry as I felt when I said, "I'm going home. Thanks very much for your help but I need to leave now and I'll deal with this later." The receptionist nodded, sympathetically.

Fortunately, my friend Doreen had arrived while I waited and done a very good job of distracting me. She waited for me while I grabbed my stuff, muttering angrily, "This is so going on my blog!"

Doreen took me out for all you can eat sushi (by the time we were done waiting, I had been hungry enough to chew off my own leg). When we were finished, I felt sated and infinitely calmer. The adrenaline from anger and stress had also seeped away. I nearly fell asleep in the car on the ride home.

I called and left a message for the C., port coordinator and collapsed on my bed. I woke up an hour later and a few minutes after that, the phone rang. It was C. calling me back. She was profusely apologetic.

I demanded to know what happened. Apparently, someone had communicated to the port-team that my appointment had been moved to another hospital and, without checking with their boss (or looking in the waiting room), they left. 

C. told me that she was furious. I said, "I'm glad you're furious because so am I. In more than 7 years of treatment I have never experienced anything like this."

She said that she understood and that "this is not normal and it's been addressed." 

I believe her. She was spitting mad. C. has always returned my calls promptly and seemed both competent and professional, so after a few more minutes of this, I decided to move on. "So what now? How can we fix this?"

We had a long conversation about what could be determined by further testing and the likelihood of being able to fix my port without surgery. We agreed that, at this point, it makes the most sense to just remove and replace. The Drano-fluid flush will only fix it if it's clogged. And the odds of that working, are only 50-50. 

I really don't know if I have all the right information but, frankly, I'm fed up and want this to be over. I'm ready to go under the knife, for the sake of a working portacath.

I took a deep breath and said, "I don't want to move the port to my right side."

C. explained to me again that the route from a right side port to the internal jugular vein is shorter, so there are fewer problems. 

I said, "I understand that but I've had a left-hand port for more than 7 years without incident. I already have a big scar on my left side and I'd really like to avoid having another on my right."

And then...she gave in.

"Well, then we can just put your port in on the left side. It's worked for you in the past and you want to avoid a new scar. That's no problem."

It was easy. I told Tim, it felt like they were ready to agree to anything after what had happened. "I should have asked for them to throw in 500 dollars for my trouble."

Now I can start fretting about the details. I have to go to the cancer centre lab and have bloodwork done. next week. Surgery will be on September 17th (on the same day as my next treatment), at 8 in the morning. I need to make sure I have someone to drive me (I'll be sedated during the procedure. Last time, I needed a wheelchair to get to the car but it all wore off fairly quickly, once I was home). Daniel will need a place to go before school, since Sacha has a doctor's appointment and Tim will have to go with him.

It's all a little stressful and the whole idea of implanting a port freaks me out a little, even though I've been through it before. I"ll be very glad when it's done.

And for the record, not once yesterday, did I say the words, "It's OK." I was too mad to be a good girl.

Update:  Our favourite pizza place forgot a topping on one of our pizzas. I called to complain. They offered to send another pizza. I said, "No. We'll eat what we have. Just give us a credit towards our next order." I'm on a roll.

all is well

Just taking some down-time for the summer.

I'm trying to live a bit more in the moment - and stopping to do things like take a photo of this lovely statue I spotted in Little Italy, on my way home from the vet.

Check out the little sheep grazing on the ball of yarn:

Regular blogging will return in September.

cut through the crap

All the junk science and bogus claims¹ about breast cancer are really getting to me these days. What bothers me even more is that some of the denial and outright obfuscation comes from sources we in the mainstream are supposed to trust.²

How do you decide what's real?

With so many conflicting messages about lifestyle changes, what advice are we to follow?

And when are those in a position to do anything going to truly investigate the environmental links to breast cancer? (I know the answer to that one. Probably never.)

It's enough to send a girl back to bed. It's pretty dark under the duvet. Maybe I can hide from the world for a while and pretend all that annoys me doesn't exist.

That's not a terribly constructive solution though, so more and more I'm turning to all the good stuff on the internet. There are lots of smart people advocating for themselves and others. And, thankfully, there is always Breast Cancer Action.

Image courtesy Breast Cancer Action.

I just signed up for a"Webinar" called "Separating Hype from Hope. Breast Cancer Media Literacy." You have to register in advance but it's completely free. There are two sessions, one on Wednesday, May 29 at 10am PST/ 1pm EST and one on Thursday, May 30 at 2pm PST / 5pm EST.

The agenda includes the following:

•  The larger picture of media literacy
• What is right and wrong about health coverage in the media
• The current state of journalism and its impact on consumers 
• How industry and pharmaceuticals influence health news reporting
• How an issue is considered newsworthy
• The 10 criteria for medical stories with specific breast cancer focused examples 
• How to give reporters feedback
• How you can get involved

Sounds like a breath of fresh air. I'm in.

Courtesy xkcd.com and thanks to a friend for this timely alert.

¹ The article that I linked to was at the very top of the page when I Googled "cure for cancer." Ugh.

² For example, this is from an article, "Barbara Brenner, breast cancer iconoclast, dies at 61": 

"Dr. Otis W. Brawley, the chief medical and scientific officer of the American Cancer Society, called Ms. Brenner “a dear friend,” but added, “I didn’t agree with her, probably 40 or 50 percent of the time.”

One point of difference was over whether environmental factors play a major role in cancer. Ms. Brenner thought they did; Dr. Brawley is skeptical."

screening the sun like an ostrich

As is pretty normal around this parts, we seem to have gone directly from winter into summer, with no real spring in between. And we also seem to have gone from winter boots and coats to the danger of sunburn.

I've been in denial about all this but I noticed a bit of pink on my arms today and realized I need to start applying the sunscreen. You'd think this would be simple but it's really not.

I am extremely ambivalent about sunscreen. It's important as a means to help prevent cancer but much of it is filled with carcinogens. The kind that isn't can feel like rubbing on bread crumbs and leave cement like globs on your skin. I found one a couple of summers ago that was organic and everyone liked but it cost $52 for 147ml (5oz). In my house, one of these tubes didn't last very long.

I think I can justify something a bit more expensive that I use sparingly on my face but I need something that the kids can apply liberally without me hovering over them muttering contradictorily about coverage and waste (Blogger says "contradictorily" isn't a word but I think it ought to be and I'm going to use it).

Our fallback seems to be buying sunscreen with good sun protection power and recommended by doctors but still loaded with chemicals. Or to use whatever's handy and hope for the best.

I'm sure there is a better solution out there. Do you have an affordable, effective and safe sunscreen you can suggest? One that's good for sports? Good on your face?

I think I need to pull my head out of the sand. That might keep my head from getting sunburn but it's not a very practical way to spend our fleeing summer.

it's not easy be(com)ing green

"You know what would make this kale smoothie better? Get rid of the kale."

-Tim, March 9, 2013

"I've added flax to my green smoothie. Now, all I need is a protein."

"Like a side of steak?"

-conversation between Tim and me, March 10, 2013*

Really unappealing but tasty, I swear.

A couple of weeks ago, I wrote about meeting with Heather, a cancer coach at the new survivorship centre. Her background is as a nutritionist and I have chosen to focus on that topic with her.

She's impressed on me the importance of making small SMART goals. I've chosen to focus on getting at least 5 servings of fruits and vegetables every day for the next month (after which I will buy myself a small present, as directed by Heather).  I was sure it would be laughably easy.

It is not.

Heather also gave me some recipes and encouraged me to try them as a way of increasing my consumption of fruit and vegetables. I tried a version of one yesterday with kale, mango and mixed berries. It was delicious but the blender didn't do a great job with the kale, leaving chunks of it to get stuck between our teeth (see first quote from Tim, above).

After a wonderful conversation on Facebook (it seems that lots of people find the topic of making green smoothies to be of passionate interest), I decided to put the water in first and blend the kale before adding the fruit. A video on "How Your Blender Uses Physics to Make a Smoothie" posted by my friend Hélène, was fascinating and very helpful.

Today, I put water and the kale (more than yesterday) in first. This helped my blender to be much more effective. I added fruit gradually, until the bitterness of the kale was masked by the berries and mango. I also added a tablespoon of flax seed.

The result wasn't pretty but it did taste pretty good.

I also found out yesterday that my friends have very strong feelings about their smoothie-making appliances. It made me covet a new appliance but Tim has rightly suggested that I should wait until I have a proven commitment to smoothie-making.

I think I'll ask for a Nutribullet for Mothers' Day. Andrea and others rave about it and it is the cheapest of the lot. It's bound to be less labour intensive than what I'm currently doing (I have to keep removing the lid and stuffing the unblended bits down). Also, there probably shouldn't be a burning smell when I'm done blending.

I'd love to hear all your adventures and advice about smoothie making. Recipe advice would also be welcome, along with other suggestions (what do you use for protein, besides a side of steak?). Andrea shared a link to the Almost Raw Vegan, who has 50 recipes that look pretty good to me.

*I've just figured out that flax seed is a great source of protein. See how little I know?

it's all about fit

Yesterday, I met with a cancer coach at the survivorship centre. 

My stated goal was to improve my health and prognosis by eating well and exercising more consistently. I shouldn't have been surprised that I was matched with a nutritionist but I groaned inwardly when my coach filled me in on her background.

Two years ago, I met with a nutritionist weekly for nearly a year and I learned a few things but mostly I paid a lot of money to feel bad about myself. Someone else might have really liked the woman I worked with but I found her judgmental (for example, not only did she not drink alcohol, she could not understand anyone who did, even a little) and extreme (her idea of a treat was to have one square of very dark chocolate, once a week). Under her smug judgmental gaze, I felt like a complete failure. 

The implicit message was that if you can't do it all, you might as well not try (that may not have been her message but it was how I felt). I stopped seeing her, feeling that I'd accomplished very little.

The cancer coach I met with yesterday was very moderate in her approach. She actually said, "everything in moderation, including moderation."

I think I love her.

After she'd told me about the centre and the programs available to me, we talked about food and eating and self-care for more than an hour. I left with information and a feeling happy and good about myself.

I see her again in two weeks.

a centre for "survivorship"

We're just back from a restorative week in Florida. It was truly wonderful to be with loved ones, play outside in the sun and dispense with all cold weather gear.

We arrived home at 2:30 in the morning to the snow and the cold. I'm sleep deprived and I don't wish to leave my house. But in a few short weeks, winter will be behind us and I can put my winter gear in storage (or just leave it out and in the way until I need it again). I feel very, very lucky to have escaped, even if I could use a nap this morning.

This afternoon, I have an appointment at Ottawa's "survivorship centre" with a "cancer coach". The place has been open for less than a year and offers a host of programs for people in treatment. I went to an orientation session a couple of weeks ago. I was impressed and inspired by what I saw there.

The Maplesoft Centre (the name bothers me for it's lack of descriptiveness and for other reasons, too. I started to explain and then realized I was writing so much in these parentheses, I need to save my comments for another post) is a beautiful building with a family room, sitting room for meetings, full kitchen and kitchenette, an exercise room, an infrared sauna and something called a Snoezelen room that really has to be seen to be believed. They offer a host of programs related to all aspects of physical and emotional health (nutrition, exercise are chief among them but I helped pilot the Arts for Wellness program last spring) . Some programs are drop-in and some are ongoing. All are free to cancer patients, after an initial session with a cancer coach, who helps to set goals. Participants can choose to meet with the coach twice more or simply to avail themselves of whatever programs and services appeal to them.

The centre staff are the first to admit they were initially afflicted by growing pains. I signed up while I was participating in the Arts for Wellness pilot, that was then taking place off-site. The following summer, I rode my bike to the centre and was put off by how deserted it was and the way the admin staff seemed to have no idea what to do with a visitor. I was definitely left with the impression that the place (which houses the Ottawa Regional Cancer Foundation) was there for fundraising and not really available to cancer patients.

I'm happy to admit that I was wrong. While I did fall through the cracks (I should have received a call after I joined, inviting me to an orientation and a meeting with a cancer coach), my experience appears to be an anomaly. The place I visited three weeks ago was a hive of activity, full of men and women of all ages. Even the lounge area, which they'd had to unlock on my earlier visit, was busy with people reading, working on their laptops or using the computer made available to members.

The centre still takes three times as long to reach by public transit than it would by car (but that's the City of Ottawa's fault) and it only has a handful of bike racks ( perhaps we can remedy that in the warmer months) but parking is free and there is a bus stop right outside the centre.  

I think the Maplesoft Centre needs to be doing better outreach to potential members. They also need a "how to get involved" tab on their website. As internet savvy as I am, I could not find anything explaining how to get involved. If the orientation and cancer coaching sessions are a requirement (and I can appreciate why they should be) then this information needs to be readily available to potential participants. I certainly would have been keener to make use of the centre if I had known this information.

My appointment is this afternoon. I'm looking forward to it. Watch this space to see how it goes.