only love

A couple of weekends ago, my family spent the day in Prince Edward County, celebrating my father-in-law's 75 birthday. It was a wonderful day and we were all pretty tired on the long drive home. 

Since the kids both had there headphones on, I started looking through my ipod for music I hadn't heard in a while. I decided I was in the mood for PEI's Lennie Gallant (did you know that practically every second person on the East side of PEI is named Gallant? It really is the name on every other mailbox).

As we listened, Tim and I remembered that one of our first dates was a Lennie Gallant concert at Artspace in Peterborough. I will never forget that evening. Lennie definitely has a special place in my heart.

As we listened, I remembered that, after I quit a job many years ago, I played a song of his over and over in my office. I even had the lyrics taped to my computer. For my last three weeks in the office, I listened to it many times a day.

I thought it was an angry song that I used to bolster myself through a difficult time. I couldn't recall what it was but as the first notes came through the speakers, I remembered.

And it went like this: 

"Only love will guide us through this time
As long as there's one flame
We have a lifeline"

I was so surprised and pleased to be reminded that, at at time when I was very angry, I was affirming to myself that love would get me through.

I wrote this post in my head that Saturday night in the car and then kind of forgot about it. But now, as emotions are running high around the Ontario election, I feel the need to remind myself what matters.

Love isn't the only thing we need to effect real change but it is the most necessary ingredient. We can't get anywhere without it.

drugs are usually > major surgery

Catherine Brunelle, who blogs at Bumpyboobs.ca shared the story of what happened when she was diagonosed with metastatic breast cancer in Ontario:

"I would be put (back) on Zoladex, I was told, which is a drug that puts your ovaries to sleep. Zoladex isnot covered by OHIP. The oncologist wasn’t sure if it would help, but he figured we should try that first and foremost before doing anything else. Except. . . except that monthly shot costs about 500 bucks a pop. Or I could pay 1500 a go and get the three month shot.
But insurance would pay for it.
Right?
…
Oh wait, you don’t have insurance? Well then, you need to have your ovaries removed via surgery.
!!
That is seriously what I was told. And if this post seems a bit fragmented in pace, it’s because to this day I’m stupefied by the solution to my struggling to afford medication – cut out perfectly healthy pieces of my body, despite there being an effective pill that could do the same thing minus the traumatic surgery."

This is mind-boggling. Being submitted to unnecessary surgery at a much higher cost to the system than covering the drug would have been. And at a much greater risk to the patient. 

Ultimately, Catherine was able to qualify for Trillium but with a significant deductible - one she would never have had to pay if she opted for surgery or another kind of treatment.

Catherine supports the campaign at FairCancerCare.ca. She's signed our petition and is now helping to spread the word.

Will you join us?

P.S.: Catherine is also a novelist. I've read her book and it's lovely. You should check that out, too.

wishing you continued good health

As, I mentioned in my last post,  I've been working on a campaign called Fair Cancer Care. We're hoping to create awareness, followed by change to how chemotherapy drugs are covered in Ontario. We launched in time for the provincial election campaign, in the hopes that we can get our local candidates to take an interest. You can find out more at FairCancerCare.ca.

The people behind the campaign are a group of Ottawa residents who have all been affected by cancer. We've all been promoting the hell out of this campaign as the election date draws nearer. My good friend Andrea is a driving force in our group. Her creativity has been key to getting us moving and, as someone who lived through breast cancer, she gets how crucial it is to ensure that everyone gets the best care available.

Yesterday, Andrea had the following exchange via email with someone she knows slightly, who'd been asked to sign our petition. I share the following exchange with Andrea's permission. For the purposes of clarity and my own amusement, we'll call the other person Ms. Smug Hubris.

SH: "I don't believe that cancer causing radiation and toxic chemotherapy is the cure for cancer. Healthy whole food and a healthy lifestyle is."

Andrea: "I thought the exact same thing before I got it. Wishing you continued good health."

Although my response was much cruder (rhymes with "Oh duck off"), I think Andrea was perfect. While Ms. SH is entitled to her opinion, I'll continue to fight for the very best cancer care to be available to everyone. 

Because the thing is, anyone can get cancer. I've known several extremely healthy living, eating and drinking people who've been hit by a cancer diagnosis. I know people who did everything right before and after that diagnosis and died anyway.

We need a cure for cancer. But until then, we need the very best chemotherapies to be available as soon as they are approved. And everyone should have access to the treatment their oncologist prescribes, regardless of ability to pay.

Ms. Smug Hubris can chose whether or not to seek treatment, should she be unlucky enough to get cancer. We'll keep working to make sure it's available.

To learn more and sign our petition, please visit FairCancerCare.ca. You can like us on Facebook, too.

introducing: #FairCancerCare

In Canada, we tend to think that, should be unlucky enough to get cancer, our health care system will cover the cost. For thousands of Canadians, this is not the case.

Ontario is heading into a provincial election. Will you sign our petition to ensure everyone has access to the best care their oncologist prescribes for them? Will you ask the candidates for support when they call you or come to your door?

To find out more, please go to FairCancerCare.ca. You can sign our petition or find out some of numbers beside these facts.

Please take two minutes out of your day and check out our campaign. The next person to find themselves without coverage could be you. Or someone you love.

how far i've come

On Tuesday night, I had the privilege to participate in Blog Out Loud Ottawa. This was my third time attending and my first as a reader. I was very nervous.

But it was a wonderful experience. Tim and Sacha (my teenage son) attended as well as several supportive friends (I hope they realize how buoyed I was by their presence). My reading went very well. The crowd was so supportive that they made it easy. It certainly sounded better to me than it ever did in practice.

If you're a blogger and you ever get the chance to read in front of a supportive group - do it!

I read a post called "learning to breathe'" that resonated with a lot of people when I first posted it. It was written last November, a year after my brain surgery. As I said at the beginning of my reading, "...each blog post is a snapshot of my life at the time of writing. If I were to take a snapshot today, it would show how far I've come."

I am more open.

I am more resilient.

I am more willing to face my anxiety.

I am more hopeful.

I am less afraid.

It's a really good feeling to aware of this progress. 

My blogging over the last year has been pretty sporadic. And I'm not sure what the future holds. But I know I want to keep writing. And sharing.

I am so grateful to BOLO organizer Lynn Jatania, to Ottawa's blogging community and to the Writers Festival for the renewed inspiration.

Stay tuned. I'm pretty sure more change lies ahead.

Upate: BOLO has posted links to all the posts from Tuesday night. And look! That's me on stage in my red dress.

national metastatic breast cancer awareness day: my statement

Here is the statement I made at today's press conference (see below for details). Thanks so much to Dr. Hedy Fry for introducing the Private Members' Bill and especially to the Canadian Breast Cancer Network for being a tireless advocate for women living with metastasis.

"Cate Edwards, daughter of the late Elizabeth Edwards has said, 'Before my mom was diagnosed with breast cancer, I assumed breast cancer patients fell into two categories: survivors and those who lost the battle.'

Before my own diagnosis, I would have said the same thing.

I learned I had breast cancer in 2006, when I was 38 years old, with two little kids. Three months aftIer I completed treatment, the cancer had spread to my liver. However, I responded well to treatment and 7 months later was in full remission.

In November 2012, I was diagnosed with a metastasis to my brain. After conventional and cyber knife surgeries, I was once again able to embrace the words “no evidence of disease.” I will be in treatment for the rest of my life and, as there are no drugs that effectively cross the brain-blood barrier, I live from scan to scan trying not to dwell on the inevitability of the next brain tumour. 

This is my story. I have known far too many incredible young women, who have done everything they were supposed to do to be healthy and who have not lived to share theirs. 

Like most women living with metastatic breast cancer, I hate the onslaught of pink that hits us every October. I don't feel that all the talk of “feeling your boobies”, of battles won and lost has much to do with me. Much more relevant to me are clinical trials, drug coverage, quality of life and the long term effects of treatment. 

The prevailing theme during Breast Cancer Awareness month, or as many of us call it, “Pinktober”is “stay positive, get through it and then move on.” For those of us living with mets, for whom moving on will never be an option, the unintended message is that we have somehow failed at having cancer. 

Despite – or perhaps because metastatic breast cancer is stage 4 (there is no stage 5), very little emphasis is placed on metastasis in fundraising or awareness campaigns. The specter of death doesn't feel very hopeful. Yet that is where the emphasis should be. 

While it's true that there has been very little decline in the number of deaths from breast cancer in the last couple of decades, many more of us are living longer. And that is very hopeful. 

It is in understanding and committing research to end metastatic breast cancer that we will really find a cure. Given that, it doesn't seem very greedy to be asking for one day every year."

we are a community. and we need to be heard

I was going to post about Blog Out Loud Ottawa (#boloottawa) but that's going to have to wait because I want to tell you all about something that's happening tomorrow.

The text reads:

"The Honourable Dr. Hedy Fry, Member of Parliament for Vancouver Centre and Federal Liberal  Health Critic, will be joined by the Canadian Breast Cancer Network to discuss the tabling of her Private Member’s Bill calling for a National Metastatic Breast Cancer Day on October 13th of each year. The Canadian Breast Cancer Network will be represented by Ms. Niya Chari, Government Relations Manager. Ms. Laurie Kingston will represent the Metastatic Breast Cancer community."

I paused for a moment at the description of my role at the table but then realized how very accurate it is. As much as I wish I didn't have metastatic breast cancer, I am very proud to consider myself part of the MBC community. I'm among some very good, smart, organized, supportive, strong advocates for change.

Metastatic Breast Cancer Awareness Day has already been designated by the US Congress and Senate. A Canadian MBC Awareness Day won't effect change on its own but it's a step in the right direction.

it's tonight!

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.

out loud

I have some good but also personally nerve-wracking news. I'm going to be reading next week at Blog Out Loud. That means I'm going to be reading a post I wrote on this blog OUT LOUD. In front of people.

What was I thinking?

Actually, I am very proud of myself for submitting a post to this annual event and prouder still for having been chosen (although this pride is mixed liberally with "why me?"). Blog Out Loud is organized by the fabulous Lynn Jatania and this year the event will be part of Ottawa Writers Festival. So after next Tuesday, I get to say that I've read at Writers Fest. How cool is that?

Here are the details:

What: 11 bloggers read their favourite post of the past year

Who: Anyone who likes to hear good stories or see amazing images is invited to attend

When: April 29, 2014, 6:30 p.m. SHARP
Where: Knox Presbyterian Church, 120 Lisgar Street, Ottawa.

There is no charge to attend.

I'd love to tell you which post I'll be reading but I've been asked to make it a surprise. You'll have to come to Blog Out Loud to find out.

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.

help keep the treatments coming

An open letter to everyone who reads this blog:

Did you know that, in Ontario, where I live, public health care pays for drugs administered in the hospital but not (most of the time) for those that are administered orally or at home? I've been extremely fortunate that most of my drugs were covered by OHIP and those few that weren't (mostly for mitigating side effects) were covered by my private insurance.

My friend Sue hasn't been that lucky. The chemotherapy drugs she needs for her lymphoma are best administered at home. As Sue points out, this is less expensive (the overhead costs are low and the possibility of her catching something that would land her in hospital is much lower) but she has been forced to pay for this life-saving treatment herself.

Sue is, without exaggeration, one of the kindest most generous people I have ever known. For many years (I first met her in 1996), she worked in a local pet supply place, where she provided advice and support to countless people and their pets. She seemed to remember every person and animal she met, whether on the street, in the dog park or at the store. She has personally rescued more than 500 dogs but knows how to help without passing judgement. I've never met anyone like her.

Not long ago, the store she worked for was sold to a chain and the new owners decided to lay off the senior staff, in favour of less-experienced minimum wages workers. On Sue's last day, hundreds streamed through to deliver presents, wish her well and give her hugs. She is a very loved part of our community.

When Sue was diagnosed with cancer, she was still without the benefits she lost when she was laid off. There are programs that help with the costs of drugs but they required that she must first drain her bank account of the money she'd received as severance pay and an inheritance from her mother, who passed away recently. So far, she has spent $50,000 of her own money.

She will soon have burned through all her savings and her inheritance. She will qualify for provincial support but will not have money to pay her rent and continue treatment during the waiting period. Will you help us close that gap? An online fundraiser has been set up to "keep the cancer treatments coming." Even if you can't help with a donation, please spread the word. I'm sure that we can reach the fundraising goal of $5000.00.

Sue's story could have been mine. This could happen to someone you know and love. We need to change this arbitrary line drawn by OHIP. But in the short term, let's help Sue, who has given so much help to so many people.

Photo courtesy Sue Breen.

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. 

allergies

There's been much discussion in recent years of the potential of using small amounts of allergens to help allergic kids develop tolerance and overcome allergies. Most recently, a study was published in The Lancet and featured in the news around the world.

These stories are very hopeful and I bet there is more good news on this front to come. However, as much as I would wish it to be the case, a handful of promising studies don't mean that my peanut allergic son will be giving up his auto-injector.

To the contrary, Daniel just concluded participation in a year long study. For a year, he wore a peanut protein patch on his back every day, removing one patch only to place another in a different spot. And for a a year, he wore a shirt all the time, even when swimming, because he got tired of explaining the loonie-sized welts on his back (this is how we knew he wasn't in the control group).

And when the trial drew to an end, he had the same anaphylactic reaction that he had when he'd first qualified for the trial (they gave him tiny amounts of peanut protein while he was hooked up to IV antihistamine). He actually reacted more quickly after a year of exposure. We have since learned that of the dozen or so kids that have finished the Canadian trial so far, half have improved, while the rest have not.

We saw the allergist a couple of days ago and he theorized that the most allergic subjects would be the least responsive to this kind of treatment. What's more, he was not surprised that Daniel is now allergic to chick peas, peas and probably other legumes. They are "cross-allergenic" with peanuts and this new allergy could well be related to the year of peanut exposure.

He's also added birch and elm (which may just be random, I don't know enough to say) to allergies to maple, all nuts, peanuts and cats.

The one bit of good news we got was that Daniel has outgrown his allergy to dogs. Since the notion of "hypo-allergenic" dogs was thoroughly dismissed by this same allergist a few years ago, we've felt a bit guilty about our dog's presence in the house and have tried to keep her out of his room. Now we don't have to.

Or, as Daniel says, "Now we can have five dogs."

That's my boy.

Update: Dreamfilm Productions told me in the comments that they have a documentary airing on The Nature of Things on February 27. It looks fascinating. I definitely plan to watch.

 

winter canadiana

That's frozen steam. My 10 year old wanted the photo because he thinks it's awesome.

Me: "Why is there a hockey stick in our bedroom."

Tim: "I was using it to knock down the icicles."

Me: "Oh. That makes perfect sense."

Lucy truly doesn't mind it.

6 more weeks, eh?

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:

of high tech and low humour

I just learned that my most recent brain MRI is clear. I'm feeling greatly relieved. It's not that I have any symptoms (although who doesn't get headaches?) but the long wait for results (10 days, when it usually takes less than a week) had me worried.

And then there's the fact that Herceptin doesn't cross the brain blood barrier. 

But for now, all is well and I can worry a little less for another three months.

The nurse did ask me if I have had a sinus infection. She said they mentioned it in the MRI report. That's some pretty high tech diagnostics.

Also, Tim wants me to make sure and include his joke: "They scanned your brain and they didn't find anything."

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.

in others words

I have pre-empted my scheduled blog post because the internet kind of exploded last night and it spilled over into today. The whole thing made me so emotional as to be almost inarticulate with rage. Luckily, there have been several good pieces published today that make my words unnecessary.

Sorry for being so cryptic. Just click through. You'll understand.

"On Live-Tweeting One's Suffering" (Megan Barber in The Atlantic)

"Bill and Emma Keller’s bizarre pieces about cancer patient Lisa Adams" (Daniel D'Addario, Salon)
"I have cancer. And I'll write about it as much as I fucking want." (Bob LeDrew, Medium)