I had the privilege of being an early reader of this book and it's fantastic. Even if you don't live with rheumatoid arthritis (RA) there is lots of advice in this book about pain management and living with a chronic illness. Lene is a friend of mine (in the interest of full disclosure). She's funny, smart, compassionate and wise and all of this comes through in this book. It's a must read for anyone who knows anyone living with a chronic illness but an especially important book for those newly diagnosed with RA.

Your Life with Rheumatoid Arthritis can be purchased as an ebook from Amazon.com, Amazon.ca and Kobo books for a very reasonable price. Go buy yours now.

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?

i suspected as much

The headline reads, "Breast cancer among young women increasing" and cites a study conducted out of the Adolescent and Young Adult Oncology program at the Seattle Children's hospital.

I certainly know lots of young women with breast cancer (I worked with several of them but that's a whole other story). I also know and have known lots of younger women with advanced (or metastatic) cancer - which is really what this article from the Los Angeles Times is all about.

As Rebecca Johnson (herself a survivor of breast cancer at 27) and her co-authors concluded, "An increasing number of young women in the United States will present with metastatic breast cancer in an age group that already has the worst prognosis, no recommended routine screening practice, the least health insurance, and the most potential years of life." 

I'm certain this is also true of Canada. This would be someone mitigated by our health care system (where young women don't avoid trips to the doctor due to cost) - I'd love to see a similar study replicated here.

The article raises the question of what is causing this increase and, as is quite common, the issues of diet, exercise, birth control, late pregnancies - so called "lifestyle" issues - are cited as potential culprits. Why then do I know so many healthy, active, thin vegetarians who were diagnosed with very aggressive metastatic breast cancer?

If we really want answers, must more research needs to be done. And this research must include a cold, hard look at environmental factors contributing to cancer.

Think that will ever happen?

I, for one, am not holding my breath.

musings on frivolity

"Sometimes we need to do something not because it’s good for us or because we ought to but because it’s fun. And because it will put a smile on our face and on the faces of people around us."

You can watch a great short video and read the rest of the post over at Frivolity.

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.

i have a dent in the back of my head

Now that the swelling has gone down, I have come to realize that there is a sizeable dent in the back of my head. I'm not sure if it's visible but I can certainly feel it.like - a chunk of the back of my head was scooped out with a melon baller.

I find this both distressing and fascinating. I spend a lot of time feeling the dent and comparing the two sides. It's all I can do not to ask everyone, "Want to feel the back of my head?"

This is probably another good reason to grow my hair out. It's one thing to have a scar that goes from my nape to above my ear. The dented bit just adds to the impression that I might be related to Frankenstein's monster.

I feel pretty normal for someone who is missing a bit of her head. The missing piece can't have been to important. And seriously, if you know me in real life, it's totally OK to ask me about it. I'll even let you feel it.

lovely ways to spend time

Want to join in a reading challenge?

I've posted details over at Frivolity. This year, I'm playing Reading Bingo!

diddly squat (the good kind)

As I mentioned in my last post, I had an MRI last Sunday.

I have subsequently had a really trying week (changing appointment times, having to negotiate and fix many bureaucratic issues with staff who don't know me, treatment and two dentist visits, culminating in a spectacularly messy and traumatic root canal) but I've a phone call from my oncologist that put it all in perspective.

Dr. G: "Guess what your MRI showed?"

Me: "Well, you probably wouldn't have put it like that if it had showed anything bad...So...It didn't show anything?"

Dr. G (sounding jubilant): "Nothing! No active disease, no residual disease just the effects of surgery."

Me: "So my brain is like my liver now. It looks like it's been through the wars but otherwise it's just fine?"

Dr. G: "That's right!"

Me: "And that's it?"

Dr. G: "Yup! Otherwise, it shows diddly squat." ( I believe that's the technical medical term)

I feel far more relieved and happy about this than I did when I had the CT. Not that I take the situation with Herceptin for granted but I do know that it has worked for me for more than 6 years. My brain, on the other hand, remains unprotected. From now on, I'll be experiencing every clean MRI as a gift.

Life is good. 

Bring on the root canals.

almost there

I almost feel like myself again.

And it took surgery to remind that feeling like myself is not bad at all.

My head still hurts but I can live with that, knowing that it's likely temporary. I can't bring myself to get a hair cut (combing my hair really hurts), so I've decided that I'm growing it out. It looks pretty bad much of the time but I can live with that, too.

The best part is the return of my energy. I can do things again, around the house and out in the world. Last week I went swimming, to an exercise class at the Cancer Foundation, to two yoga classes (one restorative and one yin, so not too taxing) and I walked lots. That feels really good.

I'm also cooking more and taking my Weight Watchers membership seriously. 

I think it's all about exerting some control over the things I can.

As for the things I can't control, I'm trying not to think too much about that. I had an MRI yesterday morning (8:20 on a Sunday morning seems very humane when you're also offered 7:00am on a Saturday. And I have friends who've had MRIs during the wee hours). I don't know who will give me results (the surgeon who ordered the test is notoriously hard to get in to see), how I'll get them or when they'll be ready but I'm working hard at figuring that out.

The odds are that all is well and that I can forget again (or at least try) for another couple of months.

good links to follow

Happy Tuesday. We have freezing rain and the buses aren't cancelled, yet there have been days when rumoured snowstorms have brought on cancellations. I don't get it.

In other news, I've been wide awake since 4:55am, mind racing, so I'm a bit punchy.

Here are some good links:

Would you like a free download of the National Film Board documentary, Pink Ribbons Inc.? All you have to do is complete a short (3 min.) questionnaire. After you download and watch the film, you're asked to fill out another short (5 min.) questionnaire. Support the NFB by telling them what you think and watch a great movie for free!

Healthline, a health related website is running a contest for best Health Blog. First prize is $1000 and Breast Cancer? But Doctor...I Hate Pink! is currently in the top spot. The author has metastatic breast cancer in it's later stages and plans to use the money towards a college fund for her son. She also writes a great, raw, honest, smart and hopeful blog - despite acknowledging the fact that she's dying. Will you take a moment and vote for her? You can vote once a day until February 15th.

A new episode of the Frivolity podcast is up, in which I talk about making stuff and silencing my inner critic. It's is available in audio only and less than 10 minutes long. How do you deal with you inner critic?

remembering Frivolity

It's been a couple of months since I recorded this but I haven't shared.

Listen (and watch, if you like) as Andrea and I discuss ways to become more frivolous. I think it's a really good time for me to remember that a little Frivolity is very good for the soul.

http://getfrivolous.com/episode-5-future-frivolity/

all clear

I just got a call from my medical oncologist. My scans are all clear.

I'd no reason to doubt that but I feel enormously relieved all the same.

Dr. G says I'm now being treated like "a patient with two compartments." I'll continue to take a drug that has protected every part of me, except my brain, very well.

And, until there are new developments, the only thing we can do the area inside my skull is to keep monitoring and decide how to treat tumours if and when they occur. 

My next MRI is in two months. Bring on the tube with the banging!

mental health day

My youngest son is home from school today. He's not sick. He just didn't sleep very well last night. He's been out of sorts lately - hard on himself and everyone around him. It just felt like a day off would be a really good idea.

We've a windchill of -35C at the moment (that's an almost as cold sounding -31F). It's warmer than yesterday but still not really warm enough to play outside.

This morning, I pretty much left him to his own devices. As per my stipulation of "not a lot of screen" (I'm convinced that watching videos and playing video games compound his bad mood, which would defeat the purpose of a day off), he asked me if he could make "pure juice" in the kitchen. I was hesitant but Tim said I could trust the 9 year old with a hand juicer and a paring knife (this is when I'm glad that the kids have two parents. The 14 year old would still not be leaving the house by himself). 

A short while later, Daniel brought me a tray in bed. He came back a few seconds later with a snack.

As we sat together and drank and ate, Daniel observed that food tastes better when you make it yourself. 

It tastes just as good when your child makes it for you.

I have just a little more writing to get done, then we're going to make soup (he bought a big bag of sweet potatoes for me with his own money, on a recent trip to the Farmers' Market in Guelph) and then do a yoga DVD. If there's time after that we may do a little spelling homework.

Or maybe not.

I'm having a mental health day, too.

limbo

I haven't even mentioned yet that I had some CT scans last Friday morning. I guess the whole experience was overshadowed by the CyberKnife drama and it's after effects.

The scans themselves (done all at once but there were three) were a breeze. The technician got my vein (for injecting the contrast dye) on the first poke and all went smoothly. I'm an hold hand at these things and being nervous about the unknown of CyberKnife left me no room to worry about the scans. I was out of there in half an hour and promptly forgot about it, in favour of what loomed ahead.

Now though, five days later, I'm worrying. I had my thorax, abdomen and pelvis scanned. I have absolutely no reason - except history - to be worried. But it's nagging at me. 

What if my gut rats (that I've been blaming on CyberKnife) have something to do with this? (although I have no reason to believe that they would)

What if the swollen gland in my groin that I had back in the summer, meant more than having a cold? (although I've been reassured that it's nothing)

What if...? (you can fill in the blank)

I don't see my medical oncologist until February 6th but I can't wait until then for answers. I see my GP tomorrow (for a referral) and she always gets copies. Perhaps she'll be able to tell me something. 

If not, I'm calling the nurse who works with my oncologist on Thursday. She's given me answers before.

It's supposed to take a week for results. Thursday is almost a week later. It would be nice to be let off the hook of suspense.

I'd become quite blase about CT scans for a while. I didn't even care if I had them. The discovery of the brain tumour has certainly shaken my confidence.

eating out for CyberKnife

I really want to write a longer post about CyberKnife. In the end, I only had one session (and it felt like more than enough) but it might as well have been three because this "no side-effect" treatment made me really sick. Four days later and I still feel sick to my stomach. 

I was just remembering thinking that after chemotherapy, my breast cancer radiation would be "a walk in the park" but I hated almost every minute of it. And I had almost every possible side effect. 

I hate radiation. It's really worth it, though if it keeps my tumour from coming back. And if others appear, I know this treatment is there for me.

 I'll write about the experience in greater detail later but today I wanted to tell you about an event I'm going to attend. If you live in Ottawa, and are in a position to eat out, you should consider it, too. Never has it been easier to make a contribution:

The small print, that's nearly impossible to read, explains that on January 23rd, participating local restaurants will be donating 25% of their proceeds to the CyberKnife and research programs at the Ottawa Cancer Centre. 

It's a good idea any day of the week but since I just finished CyberKnife treatment, it seems particularly appropriate (assuming my stomach agrees and I feel better). I'll be going to the Atomic Rooster with Tim because I've heard really good things, Tim says the food looked great when he was there last week for a friend's vernissage and because her art show is still running and I can see it too.

Click here for the list of participating restaurants (scroll down) There are more than 100! and to read more about CyberKnife in Ottawa.

Finally, here's a short video where a neurosurgeon (mine!) talks about the importance of the CyberKnife to the Ottawa Hospital.

update: looking up

The pity party is over. I'm feeling much better now.

My energy levels have started to come back and my walks are getting longer and faster.

I had a wonderful week in Florida that contributed greatly to healing. I even swam a bit while I was there. I can do the sidestroke and the crawl but my neck won't yet let me do the breast stroke.

I did a bunch of balance tests today that I passed with flying colours. My balance wasn't really that bad but the tests I found challenging (pretty much the same as a sobriety test) two months ago were really easy to do today. I hope that translates into less falling down.

I still have pain in the back of my head. It's not near the incision, which is long and itchy but healing well. This feels more like a giant bruise on the top and back of my head. I can't bear for anyone to touch me there, sometimes it throbs and when I overdo it, my head feels like it's in a vise. It turns out that this is not unusual and healing will take three to six months. Just knowing that it's no big deal (and not a sign that my brain is swelling) is very reassuring. Apparently surgery damaged my muscles and all the extra blood and air beneath the surface need to go away. Or something like that. I was given a more scientific explanation but that's what I retained.

Tomorrow, Monday and Tuesday, I will undergo three CyberKnife sessions (either 'one dose in three treatments' or 'one treatment in three doses.' I can't remember. I had a terrible appointment with my radiation oncologist to lay out the plan but I'll save that for later. I really don't feel like making my blood boil so close to bed time). I still don't much like my radiation oncologist but I hear he's really good at the zapping part, which is what's important.

I also have a CT scan tomorrow of my abdomen and thorax.

I'll have an MRI in two months and then every three to six months thereafter.

I have a serious crush on my surgeon. I think Tim might too. After Dr. S. left our appointment today, we both gushed, "He's so good!"

I feel like I'm crazy busy, which is why I haven't been writing.  I guess when you do nothing for weeks at a time, you end up paying the price. I need to be careful not to overdo it, though (see above, re the vise).

And how have you all been for the last eight weeks?

somehow, i thought

I thought it would all happen more quickly than this. I thought if I had no complications, then I would just heal.

I thought that "three days in the hospital and two weeks puttering at home" meant that by the start of the third week I would be running errands, writing, going for walks and yoga and that I would be putting this behind me.

It's not happening that way.

I am healing.

I'm just not very patient.

My head still hurts. Sometimes a lot.

I am more tired than I could have imagined.

I still feel stoned, even when I have taken nothing for the pain. My brain is just not working properly.

And my fingers don't seem to want to type what my brain tells them.

It has been three weeks since my surgery and it really doesn't feel like it was very long ago at all.

Except that I'm less patient now.

Which is probably a sign that I'm healing.

I'll get there. Of course I will.

Today, I just wish it were easier.

healing

Well it's not been linear but I definitely am healing well.

The drugs have made it hard to concentrate and type but things are progressing well. Today is the first day that my fingers and my brain seem to move more in concert.

And now I have treatment tomorrow.

So please don't worry if I don't blog. I'm doing fine - and expect to get back into regular writing next week.

Thanks so much for all the love and support from near and far.

It means more than I can say.

home!

Best news:
Clean margins. Clean MRI. Home to heal better.

Extremely tired and drugged but pain meds managing.

It was cancer. Very like original adenocarcinoma from 2006 (i.e it's breast cancer in my brain). Full pathology in a couple of weeks. 

Next treatment will be one dose of cyber knife radiation in a couple of weeks.

I have herceptin mid-December, not sure if anything will change on that front.

Writing is very hard but I am doing well.

More on whole experience soon.

Thanks to you all so much.

it's all official now

Dear Everyone,

I just got the call. I need to be at the hospital by 6:15 tomorrow morning. My surgery is at 8:00am until 3:00pm (gulp). I am my surgeon's only patient tomorrow (the person who called said this like it was unusual). I'm happy to know that I will have his full attention.

I am likely to be on Twitter until they take away my phone. Tim will update as he has info. You don't have to be on Twitter to read updates. You just need to click on the links below:

Laurie's Twitter feed.

Tim's Twitter feed.

I'll be in the hospital for a few days. Once I'm out of post-op and in a room, I'll have wifi access and Tim will bring me my phone and computer. 

If you're in Ottawa and thinking of coming to visit, let me know. Visiting hours are between 3:00 and 8:00pm but I'm only allowed two people at a time, so message me before coming.

Thanks so much for all your messages of support. Each time someone reaches out to let me know I'm in their thoughts, it lifts my spirits.

I am vacillating between a surreal sort of calm and waves of anxiety. I feel like I should be getting ready but I think, for so many reasons, that's hopeless.

I, however, am filled with hope. I am planning my life on the assumption that the tumour will be safely and completely removed with no complications. 

See you on the other side.

love,

Laurie

fun facts about Laurie's brain surgery

I will be having surgery, next Tuesday, November 27.

The exact time is to be confirmed but I will be going to the hospital very early in the am. The operating room is booked for seven hours but some of that time will be bringing me in and out of the anesthesia (I'm guessing at this because the surgeon estimated the procedure would be five hours long).

******

If you don't want to know the gory details, I understand completely. Why don't you go over to Frivolity? It's a much for fun place. Come back any time you like.

******

I will have six different tubes in me in various places in my body. This will be uncomfortable when I wake up.

Surgery to the back of the head is sometimes done with the patient sitting up. I don't know if my surgeon will choose to do it this way.

He will have to cut through my neck muscles to get to the cerebellum.

. 

You can read about the rest of the steps in this very helpful article from Johns Hopkins. The biggest difference is my bone will be tossed and replaced with wire mesh to avoid infection. You shouldn't be able to tell - it won't feel very meshy from the outside.

My surgeon does what his colleagues laughingly call a "California hair cut." He spent time at Stanford University, where they treat many celebrities and try to shave as little hair as possible. It will be nice not to be bald again (also, this makes me like my surgeon even more).

I think I would have liked a few more days to prepare and nest but I'm very relieved to have a date and to be moving forward.

call me George-Michael

We've posted a short clip on Frivolity. In this one Andrea and I talk about overcoming our  obstacles, trying new things, taking bold steps and learning how to have fun.

There is also an Arrested Development analogy or two.

new post at Frivolity!

I have a new post up on grabbing the moment over at Frivolity, called walking the talk:

On Sunday night, my spouse asked me to join him and my youngest son in front of the fire. I passed (my exact words were “Who’s going to do the dishes?”)

A few minutes later, I heard my 9 year old’s voice from the living room. Suddenly, I was very aware of the irony that I had just launched a site about doing what makes you happy. Really, what did it matter if the dishes stayed dirty? The dishes in my house are always dirty.

You can read more at and check out our new site and podcast at getfrivolous.com.

going with doors number 2 AND 3

I've been persuaded to have surgery, followed by targeted radiation. This will be my best shot at getting it all.

I really liked the surgeon we met yesterday. He was patient, clear, forthcoming and took lots of time to answer our questions. I've decided to trust him.

I was feeling pretty devastated yesterday. I was hoping hard that the route I wanted to go would also be the best route. Who wouldn't want the treatment that purports to have few side effects and doesn't involve having your head cut open?

But I went for a lovely walk with a friend and then slept for 11 hours last night. Today, I feel much more at peace with my decision.

Although I'm still a little freaked out.

One cool thing: The surgeon says that if you rate the difficulty level of what the kinds of surgery he does from 1-10, mine will be a 3.

Makes it sound pretty simple, for brain surgery.

watch and listen: i get tattoed

The most recent episode of "Get Frivolous" is up over at Frivolity, the site of my new project with Andrea Ross.

This is the one in which I get my new tattoo. You can listen in before, during and after. Watch the video (Andrea put together a slide-show with photos taken by my friend Helen Berry) and/or listen to the audio on it's own.

It takes less than twenty minutes and it's good fun - if I do say so myself!

crapshoot

Last week, Tim and I met with my new radiation oncologist. Dr. C is a walking talking Gallic stereotype, with a rumpled white coat and a turned up collar. He was full of sighs, snorts, "Boff!"s and very eloquent shrugs. Both Tim and I observed that the only thing missing was a Gauloise emerging from between his lips.

Not my radiation oncologist. This is the French actor Gerard Depardieu, to whom Dr. C. bears a remarkable ressemblance. (photo IMDB)

After asking how it was that my tumour had been found (he was surprised that I had asked for the MRI), Dr. C shocked us by putting three options on the table:

Whole brain radiation (which he noted is still the standard treatment for brain tumours in most of the country).

Surgery (which is possible because my tumour is on the surface of the cerebellum).

Cyber Knife radiation treatment (which is the only option we were expecting).

Dr. C offered no advice as to which we should choose. He told tell us that there are no clinical trials and no longitudinal studies to guide us because most patients with brain tumours don't live enough to be studied longitudinally. On the other hand, it's really unusual for a patient to have only one small tumour.

The size and singularity of my tumour are very positive things but they make it really hard to base my decision on anyone else's experience. For example, whole brain radiation (WBR) "treats the whole brain" (as Dr. C helpfully pointed out when I asked him the advantage to that treatment). The rates of overall recurrence are lower with WBR. However, the treatment also causes permanent alopecia and can cause permanent cognitive damage. It seems to me that it's a bit like taking a sledgehammer to hit a single nail - you end up needlessly damaging the plaster.

I've decided that WBR is off the table for now (keeping it as an option to treat future tumours).

With surgery it might be possible to clearly cut out the tumour. However, it's still surgery with all it's risks, pain and side effects. 

Cyber Knife has very few side effects (in the words of Dr. C "almost nil."). There is a risk of necrotic (dead) tissue needing to be removed surgically in a few months' time.

Dr. C wasn't condescending or impatient just painfully honest. I am once again navigating the land of the cancer unknown. Perhaps the surgeon to whom I'm being referred will have some insight.

To recap:

WBR is the standard treatment and may prevent future recurrences. However, I have no indication that there is another tumour developing soon and WBR comes with some nasty, permanent side effects.

Surgical techniques are being refined all the time. A surgeon may be able to more clearly extricate the tumour. However, I do not relish having my skull cut open and the subsequent pain and recovery time.

Cyber Knife is reported to be as effective as surgery, painless and with few side effects. On the other hand, some of those reporting this are the owners of the company. I don't relish the possibility of necrotic tissue but I do love the idea of walking away after a 40 minute session.

I kind of wish I had a three sided coin. Or a crystal ball. And then there is this guy in Italy with a brain tumour who hacked his medical records, posted them online and got advice from all over the world.

I wish I knew how to do that.

Meanwhile, I have a CT scan and Cyber Knife mask fitting on November 9th, an MRI on November 11th, a consultation with a surgeon on November 13th. I have a Cyber Knife appointment booked for November 23rd, in case that's the route I choose to travel. All these dates have been booked in the last couple of days. I still don't know what I'm going to do but it feels good to be moving forward.

ebook!

Not Done Yet is now available as an ebook on Kobo (other e-retailers to follow). 

I still have lots of hard copies to sell but this is cheaper for you and no shipping!

pondering options

I know that some of you are waiting for a post about yesterday's appointment. I do plan on writing a longer post but have been too busy with lots of good things to get to it.

For now, I'll just say that I'm fine. I was actually offered options at my appointment and have to make choices. This is not bad news, though, just not what I expected. We're doing lots of talking and reading and re-visiting. The radiation oncologist has referred me to surgeon for consultation. I'm still going into the Cyber queue and one way or the other will be dealing with the tumour in 3 to 4 weeks.

Stay tuned for a more detailed post in a day or two.

the raven and the sun II

photo: Helen Berry

I think it's appropriate that, at this stage of my life, I should re-affirm my love of the raven myth. 

embracing Frivolity (a new project)

I'm so happy to announce the birth of the Frivolity project! You can find us over at getfrivolous.com. 

Here's an excerpt of my perspective on  "Why Frivolity?"

A couple of years ago someone wrote a review of my book that really pissed me off. The reviewer took me to task for seeking and finding pleasure in things irrelevant and frivolous (I’m shamelessly paraphrasing here). I threw the review across the room, where it sat for several weeks (Those of you who know me will will understand that this is literally true. Housekeeping is not one of my strengths). 

Then I got to thinking about why it’s actually OK to be caught seeking fun and happiness. We all have lists of things we’d like to do “some day”. We write them down in notebooks, scribble them on napkins (or is that only in the movies?) or keep them locked away inside our brains. That’s certainly what I did – until I was faced with a life threatening illness and was suddenly very motivated to make “some day” happen “right now.” 

From spending the day at the art gallery to writing a draft of a novel to getting my first tattoo, I began to ask myself “Why not now?” 

This new blog and podcast are all about finding ways that Andrea (my co-conspirator) and I, and any of you who want to play along, can embrace the frivolous, take risks and have fun. In my opinion, the world could use a little more frivolity.

Come listen, watch, look, read and share. Send us your ideas, responses, images and stories. Join us in our Frivolity!

sometimes you confront it

photo: Andrea Ross

A few years ago I wrote a list that I turned into a blog post called "whiskers on kittens." This is the opposite of that post, because sometimes you need to deal with fear head on:

Dying.

Getting old. (I'm aware of the irony of this.)

Heights.

Being a terrible writer and not realizing it. (I had a dream last night that a former boss morphed into my father and he/they said, "You don't write. You just throw words on paper.")

Dementia.

Being irrelevant.

Going blind.

Fears too big to name. (They involve loved ones and I'm just not going there.)

Being at a cocktail party with nothing to say.

Being forgotten.

Birds.

photo: Mark Blevis

time is still relative

November 1st.

That's when I'll meet the radiation oncologist, ask some more questions, get more information and most i mportantly - MAKE A PLAN.

This morning, I spoke to Rejeanne, the nurse who works with my medical oncologist. I must have gasped when she told me the date of my appointment because she said (and kindly),  "If Dr. Gertler thought the appointment needed to happen sooner, he would have said something."

And so I wait. November 1st is only a little over 2 weeks away. 

It feels like an eternity.

have you read "Not Done Yet"?

Have you read this book yet?

I think I have all the remaining copies of Not Done Yet : Living Through Breast Cancer in my attic. I'm selling them for $25 (tax included) plus shipping. 

I'm told it's a pretty good book. You should read it. Or give it to someone you love.

don't freak out

Have you heard the supposed ancient Chinese curse, "May you live in interesting times?"

Things just got a little more interesting around here.

The routine MRI I had on October 5 revealed a 20mm lesion in my cerebellum. 

Photo: mybrainfacts.com

My oncologist and another from whom I got an unofficial second opinion are very optimistic that this thing can be easily zapped with stereotatic radiosurgery (also called Cyber or Gamma knife surgery), which isn't surgery at all but a very precise form of radiation. Treatments are few (between 1 and 5 sessions) and cause very few side effects. 

It's a really weird feeling knowing I have a cancerous mass in my brain. It does explain all the falling down (the cerebellum controls balance). I've always been clumsy but the last few months have been ridiculous.

I'm having a harder time dealing with the fact that the cancer has returned. I've been in remission, or NED, for five years. It's become easy to entertain the fantasy that the cancer was gone for good. My oncologist has even mused about that possibility.

This relatively little (I'm assured it's small by medical standards) tumour is a sobering wake-up call. I have Stage 4 breast cancer. That is always going to be true.

Still, I continue to be lucky. Herceptin came onto the market in time to save my life. Ottawa is only one of three Canadian cities to have Cyber knife technology and that is only as of this summer. Time is once again on my side.

So please join me in not freaking out (or in only freaking out a little bit). Life around here continues as normal (or at least our version of it). The day after finding out about the tumour I joined Weight Watchers. How mundanely optimistic is that?

I'll know more once I meet with the radiation oncologist. Meanwhile, I really want this t-shirt:

I'd order it, except that  Ihopefully would only get to wear it a couple of times before I'd have to change "have" to "had." I don't want to waste my money.

limits on multi-tasking (on not doing pelvic lifts while I brush my teeth)

You'd think that since I don't have a full-time job (or even a part-time one) and both my kids are in school that time management would be a breeze, yet I still find myself struggling to get things done.

Part of that is pure procrastination (it's a slippery slope from checking my email to reading 10 tabloid stories someone linked to on Facebook). 

Part of it is feeling overwhelmed (where to start on a large project? which project should I work on first?).

It's also that I have changed the way that I live my life. Before cancer, when I worked full time, it seemed that every minute needed to be spent in a productive way. I tore myself out of bed in the morning as though jolted by a starter pistol and collapsed back in long after I knew I was tired. I answered emails while watching TV, talked on the phone while I played with my kids, read over documents while I rode the bus. There were seldom any truly quiet moments.

Cancer pushed me off that treadmill. In some ways I miss it but in lots more ways I don't.

While I still keep lists obsessively, I try not to obsess over getting through them. And over the last few months I've begun to embrace the efficiency of doing one thing at a time and doing it to the best of my ability. I still have a long way to go.

Every time I read a newspaper online or leaf through a magazine, I am urged to multi-task in every possible way. "Give yourself a facial while you make dinner!" "Fold laundry while you return calls!" "Tighten your butt muscles while you brush your teeth!" It all feels exhausting to me.

I am very fortunate to have been given the gift of time. I'm working at making it work for me. I want to focus on playing the game, not worrying about whether I'm going to drop the ball.

brain fart

Today, I set myself up to do a phone interview with an author based in Los Angeles, California. 

The whole thing was set up through her publicist and we'd worked out a time of 12:30pm PST for me to call.

Counting the three hour time difference in the wrong direction, I came very, very close to calling her at 6:30am PST. This would have been bad, especially because she writes in her memoir that she is most definitely not a morning person.

This is embarrassing. The publicist first suggested an earlier time and I balked because it would be "the craziest possible time in our house, as we try to get everyone out the door." The time suggested had been 11:00am PST, which really would have been 2:00pm EST, which would have been fine.

I really should know better. I spent three years on the West Coast, in the heart of PST-land. I also spent 15 years working for national organizations and was adept at working out time zones.

My brain is rusty.

The interview is really scheduled for 3:30 EST. I will be in the middle of my afternoon slump but at least I know I'm ready.

keep your head down

It's begun.

The annual barrage of pinkwashed crap and pinxploitation is in full swing.

And I really don't feel like talking about it. What I want to do is stay home for the rest of October and not open any emails until this month is done. Enough already. Now that it seems that more people can relate to my pink ribbon anathema, why haven't the pitches slowed down or the products become harder to find?

I want to make like an ostrich and just wait until it all goes away.

Instead, and to spare myself the need to get worked into a lather, I'll direct you to the right sidebar of this blog. Scroll down to the "labels." Click on the one marked "don't buy pink crap" (or just click on this link to go there directly) and you can read rants, observations, a little analysis and links to the blogs of some compadres.

Speaking of compadres, these great bloggers are kindred spirits, when it comes to pinkwashing:

i hatebreastcancer

Uneasy Pink

Gayle Sulik (author of Pink Ribbon Blues)

The Assertive Cancer Patient

Nancy's Point

and, of course, the late, great Rachel of Cancer Culture Chronicles

I'm sure I'm forgetting some bloggers and I'm sure there are more that I don't know. Do you have others you could add to the list? Let's make an anti-pink blogroll!

(As an aside, I note that all but one of these blogs is written by women with metastasis. I will be writing more about living with mets amidst the pink ribbons in the next few days)

I also can't resist another chance to put in a plug for Pink Ribbons Inc, the movie that explains it all and does it very powerfully.

Updated to add:

 A great article from the web site xojane: I Hate Breast Cancer 'Awareness' Month.

October:  Breast Cancer Awareness Scam Month by Suzanne Reisman. Suzanne writes a post for BlogHer on this subject every year. And her words meant a great deal to me in October 2006 when the shock of a pinkwashed world first hit me. I even quoted her in my book!