But I think I look very cute in my new pink cowboy hat (I am told that it's the same one that Julia Roberts wore in Runaway Bride - except hers wasn't pink). It's also really, really comfortable and it makes me happy. So there.

Thanks to Debbie from Journey Bags for taking the photo and emailing it to me. She asked me to let you all know that if you use Promotional Code 1208 when ordering from her site, you can get 10% off.

I think my hat is very Texas. And cheaper than new cowboy boots. And since I passed on the opportunity to go to a real cowboy bar and ride the mechanical bull, I thought I should bring home a little bit of the Lonestar State.

I decided when I was on my walk around the hotel grounds this morning that the complaining I did earlier made me sound very spoiled. The truth is that this venue seems pretty ideal for a conference and I am extremely lucky to be here (and I mean that in so many ways). It would be great if it didn't cost $3.25US for a coffee but it is what it is. And I am assuming there will be free coffee once the conference starts in earnest.

Yesterday was a very long travel day. I miscalculated and finished my book way too early in the trip. As a result, my notebook is filled with random observations I made as I sought to fill the time:

I always feel nervous and guilty when I go through security, immigration or customs. I feel like I am going to be "caught." This is ridiculous since I never lie in these situations or smuggle.

There are signs up at US Immigration stating that all travellers will have their hands scanned and photos taken. I only saw this happen to one person. He was an older white guy so not sure if this was random or some new kind of profiling I've never heard about.

You wouldn't know that the North American economy is in crisis, judging by the number of people who are travelling. Both my flights were full, with long standby lists.

My flight out of Chicago was delayed because the plane was struck by lightning. Folks were very upset but I kind of felt that I would rather have a safe plane than one that left on time.

I have never had a sandwich in an airport that didn't taste like cardboard.

One woman seemed to think that the airport was a great place to find a boy friend. In the waiting area in Chicago, I overheard the following conversation:

40ish Blonde Woman (flirtatiously): "Watcha readin?"

Attractive 50 something man: Mumbled title.

Woman: "Is it a Christian book?"

Man: "I suppose it is."

Woman: "That's what I had heard about it."

Man: Silence.

Woman: "You seem really interested. You just keep writing things down."

Man: "Just noting some things."

Pause.

Woman: "Do you live in Dallas?"

Man: Silence.

Woman: Launches into detailed explanation of where she lives. Mortified I get up and leave.

Some time later, after we change gates, I see them again. She is calling out to him, "Don't go away! I'm a catch!"

A few minutes later, she has moved on to another man. From across the waiting room I can hear her talking about going to church.

So - was she prosletyzing or cruising? Or both?

When I am desperate enough, I will read anything. Apparently this includes the in-flight magazine (this month's issue features the NBA) and something called Skymall. I found myself coveting this and this and thinking this was kind of gross. And then I felt guilty that I don't have anything like this to protect my neighbours from my unsightly air conditioner (but what would protect them from all the unsightly dog poo in my yard?). I could go on and on. And the prose in the catalogue was fantastic.

I was too shy to talk to two women I saw at the Chicago end of my flight who I guessed were going to the conference. I redeemed myself by greeting them as we waited for our bags in Dallas. They told me that they have been coming to this conference for six years. They promised me that I was going to have a wonderful time. They also told me that they are expecting 1,000 participants this year. Wow.

The "Networking Opportunity" I mentioned in a previous post is happening now. Time to take a deep breath, gather up my leis and head on down.

Mid-winter blues.

Bored.

No new ideas ("said it all before" syndrome).

Too much loss.

Whatever the reason, I have not felt much like blogging (or doing any writing) lately. 

I couldn't even muster up the energy to blog about the recent Komen debacle (although I took it all in with great interest).

And I can barely bring myself to think about Rachel (a scathingly brilliant and funny anti-pinkwashing activist and kindred spirit) or Susan (an equally brilliant leader, founder of Mothers With Cancer and mother of two young boys) without becoming undone. They deserve the kind of tributes others have written but I can only say who devastated I am that cancer has taken two more wonderful women.

So, I've been taking a break. 

And fallen out of the habit.

I think I might be ready to come back soon. Or to get back to writing down some thoughts.

And spring will come soon too.

Meanwhile, please know that all my latest tests have been gloriously normal. I'm doing OK. I just need to get past this dry spell, so I can return to writing with joy and enthusiasm.

I'm green and orange. As with previous events of this nature, I like to identify others who know what it's like to live with mets. I am also acutely conscious that wearing the orange may be every participant's worse nightmare.

I am in Dallas (or somewhere on the edge of Dallas with only highway and hotels as far as the eye can see. The hotel claims to have seven acres of "park" with walking trails that I have yet to find or check out. Given that the restaurant with the "open air ambiance" is actually in a roped off area of an indoor courtyard and the spa and gym are in a separate building and charge a membership fee, I am prepared to be disappointed). This hotel is huge.

Please note the little friend that I found when I opened my suitcase. He's half of a pair of "sweater monsters" that were given to me by a dear friend. I think D. decided that I might be lonely on my trip. How thoughtful was that?

I am off to find coffee and breakfast. I've been up since 6.

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.

I had abdominal and thoracic CT scans a couple of weeks ago. For the first time since July 2007, I was not simply told that all is clear.

But I wasn't given bad news either.

I was told over the phone that some of my lymph nodes look "suspicious" but as my oncologist conveyed via his nurse, "that could be anything."

I was just recovering from a bad cold when I was tested, so that could have inflamed by lymph nodes. The only thing to do right now is wait, go in to see my oncologist on October 10th and then - I don't know. Do another scan and see if there is any change?

I've been told not to worry, so I'm working on that and on patience.

Meanwhile, I have a brain MRI scheduled for next week. This is purely routine, as herceptin does not cross the brain blood barrier. I have been fretting about it because I did not enjoy my last one - it's so unbelievably LOUD! I'm bringing company, extra ear plugs and lorazepam.

I'll have the results for that on October 10th as well.

So I'll be sitting tight, keeping busy and focusing on the things over which I have some control.

Anyone want to sit and knit somewhere or come help me organize my house?

"Worry has an anxious and unfocused quality. It skitters subject to subject, fixating first on one thing, then on another. Like a noisy vaccuum cleaner, it's chief function is to distract us from what we are already afraid of." - Julia Cameron, Walking in this World.

observation #1: I am getting dumber and my kids are getting smarter.

My youngest son is undergoing some tests with a psychologist as part of an educational assessment. After his session, the psychologist showed us some of the non-verbal test questions, which involved pattern recognition. D. picked out the illustrations that fit the sequence in split seconds. I asked if he had seen these particular questions before. He hadn't. He's just quick and very, very bright.

The thing is that he answered these questions much more quickly than I could have, selecting the right answer while I was still puzzling it out.

observation #2: I derive almost as much satisfaction from making lists as I do getting things done.

I am going away tomorrow morning (I got a scholarship to attend the Annual Conference for Young Women Affected By Breast Cancer, in Dallas) for a few days. I spent a good part of the morning making a list of everything I need to get done. I love lists. Having several (what to bring in my carry on, what to pack and what I need to do before I go) has made me feel much almost as though my work is done.

observation #3: I am very anxious about attending a conference where I will know no one.

The truth is that I would rather speak in front of 1000 people than meet 100 people one at a time. The words "networking opportunity" scare me. I have been reminding myself that I need to have an open and friendly demeanor and that it's OK to bail and go to my room when it all gets to be too much.

observation #4: Having worked in communications does not make it easier to promote my own work.

I would rather sell a message or promote someone else then sell myself. I have had the same business cards (lovely ones that my older son made for me) for a year and have yet to make much of a dent in them. I am bringing flyers advertising my book, though and will at least put them on tables, even if I don't have the courage to talk about it.

observation #5: I get very excited at having time to myself and tend to over-estimate what I will have the time to do.

The weather will be warm in Dallas. And my hotel (we got great discounted conference rates) is far from anything touristy to do. It does have nice grounds, a nice gym, several pools and an outdoor restaurant, so I plan to pretend that I am at the spa in the hours before the conference starts. I am bringing knitting, books and workout gear. Lots of all of it.

observation #6: Homeland Security is going to have a field day with my suitcase.

Circular knitting needles (joined by flexible cables), pins (for blocking or shaping finished scarves on my extra bed) and a bottle of hair mousse. I might as well paste a sign on my suitcase that says "suspicious contents!". The Yarn Harlot says that her suitcase is opened and checked every time she goes to the States. Mine was only opened the one time I packed knitting in my suitcase. I think knitting needles look suspicious on x-rays.

Off to make some tick marks in my to-do list now.

I may blog while I'm away, if I can find free wireless in the hotel lobby. Can someone tell me why the cheap chains give you free wireless but the fancy hotels charge extortionate rates for slow access?

Better than fine, actually. And I have lots of posts stewing in my head (that sounds kind of gross).

But I've had to spend the last few days running around doing all the things I couldn't get to when I wasn't feeling well.

Regularly scheduled (or at least semi-regularly scheduled) programming will resuming shortly.

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.

My oldest son had his wisdom teeth out today. While I worried and waited, I got to thinking about managing his pain and remembering the aftermath of my brain surgery two years ago. I made a bunch of notes for a blog post about this and then thought to do a search of this blog. It turns out I wrote a post on exactly this subject almost a year ago. 

Sigh.

Can I blame these lapses in memory on the brain surgery or just on aging? Or stress?

My son's procedure went well and he is now very stoned and asleep in his room. To pay for all this we had to put 1800.00 on our credit card.

This is mind-boggling to me. Why is this not covered by public health care?I know the historical reason why (the first wave of Medicare was supposed to be followed by dental care and a Pharmacare program. That never happened.) but doesn't it cost the province much more to hospitalize someone whose wisdom teeth have become impacted?

Dental care is a real "don't get me started." Ask anyone who knows me.

Fortunately, my private insurance will cover most of the cost. However, it only covers part of the cost of anesthesia. What would have happened if we had been unwilling to pay the difference? Our 16 year old son would only have been partially anesthetized while they yanked out his wisdom teeth? 

This mystifies me.

And it's only a small taste of what we'd experience if we didn't have socialized medicine.

Gratuitous photo of my handsome son, with all wisdom teeth still in his mouth

My youngest son came to see me in the kitchen this morning, while I was making school lunches (By the way, has there ever been a more thankless task in the history of parenting? I don't thinks so).

Me: "Your face is so clean! Great job!"

D.: "I washed my face!" (He shows me how he did it, miming vigorous rubbing.)

Me: "That's great!"

D.: "And I brushed my teeth. And I even flossed." (He mimes brushing and flossing.)

Me (impressed): "That is amazing. You are awesome."

D.: "I did it because at day care we are learning about the importance of good hygiene."

They have good teachers at the day care. And, apparently, their words carry more weight than mine do. Maybe I could ask them to talk about "the importance of being polite to his parents" or "the importance of cleaning up his toys."

On Sunday, two of my humans and I went to a very special birthday party.

There was cake.


The birthday girl turned 17.


She looked very pretty.


A good time was had by young and old (I thought S. was a little too cuddly with that puppy).


It was fun to be at a party.

It was nice to have a nap, too.

On Friday evening, my friend K. will be arriving from the Netherlands for a long-anticipated visit. I haven't seen her since she flew to London to hook up with S. and me in the spring of 2008. I can hardly wait! Two more sleeps!

K. is a gastroenterologist and is coming to Canada for a conference in Toronto. She's making a special trip to Ottawa to hang out with my family and me for the week end.

The last time K. came to this part of Canada was in 2005, when she attended a conference in Montreal. I took the train to meet her, and we went out to dinner and had a sleepover. At that point, we hadn't seen each other in almost twenty years and I was worried that we wouldn't recognize each other. That turned out to not to be a problem, and I remember how my heart lifted when I saw her.

I also remember the Colossal Colon that was set up in the atrium of the conference centre. The thing was huge colossal. I was awestruck. And I seem to remember that no one else was giving it a second glance.

I was reminded of this reunion and the big colossal colon the other day, when someone on Facebook linked to an article by Miami Herald columnist and humourist Dave Barry:

"What happened was, a giant 40-foot replica of a human colon came to Miami Beach. Really. It's an educational exhibit called the Colossal Colon, and it was on a nationwide tour to promote awareness of colo-rectal cancer. The idea is, you crawl through the Colossal Colon, and you encounter various educational items in there, such as polyps, cancer and hemorrhoids the size of regulation volleyballs, and you go, ''Whoa, I better find out if I contain any of these things,'' and you get a colonoscopy.

If you are as a professional humor writer, and there is a giant colon within a 200-mile radius, you are legally obligated to go see it. So I went to Miami Beach and crawled through the Colossal Colon. I wrote a column about it, making tasteless colon jokes. But I also urged everyone to get a colonoscopy. I even, when I emerged from the Colossal Colon, signed a pledge stating that I would get one.

But I didn't get one. I was a fraud, a hypocrite, a liar. I was practically a member of Congress."

Barry goes on to tell how some jarring news about his brother moved him to finally have the colonoscopy. And other than the prep, it was no big deal.

It's called, "A Journey Into My Colon -- And Yours" and it made me laugh out loud in several places. Go read it.

And, if you're over 50, make an appointment for a colonoscopy.

I'm going to be offline all this week, so I schedule this post to fill you in on a couple of things.

You can now subscribe to this blog. Quite a few people have asked me about it and it actually just took a few minutes to set up. If you want to get my posts via email, look over at the right hand column on this page. Just under the "about me" section  is a little box in which you can enter your email address. If you do that, you'll be notified every time I write a new post. If you go that route, let me know if it works for you.

I recently found out that Not Done Yet is available as an ebook from a few different sources.

Amazon Kindle 
US
Canada
UK

Kobo

Nook

I also have a few copies in my attic, if you like old-fashioned paper. I bought them at the author's discount, which I'd be happy to pass along to you. I'll even sign your copy and write a personal message. The cost of a real honest-to-goodness paper book is $20.00, plus whatever it costs me to ship it to you. That's a break even deal for me but I'd like to see the last few copies get out into the world. Click on the image on the top, right hand side of this page to send me an email or leave me a message in the comments.

I'll be back next week!

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.

No Pink for Profit has been formed again for the 2011 Run for the Cure.

Want to help raise the right kind of awareness and help fund advocacy, outreach and research?

You can make an online donation. It's easy! It's fun! It's for a good cause.

Your support is very much appreciated.

I'm going to be on BlogTalk radio tomorrow!

The show: Lovebabz Lovetalk.

The time: 12:30-1:15 EST.

The call-in number: (718) 766-4895

The subject: Not Done Yet, Living Through Breast Cancer.

Please call in, if you can. I am really looking forward to this on-air chat with my friend Babz.

I've been really struggling with insomnia lately. Falling asleep is tricky enough, but remaining asleep is the real challenge.

Most nights, I find myself awake plagued by questions:

Where do I know the actor from who played the handyman in The Waterhorse?

Should we have washed the dogs before we cleaned the carpets?

What if my oncologist ordered a thoracic CT scan so soon after my last abdominal one because they heard something during my last exam (and not just because I hadn't had one in a long time)?

Is the hat I'm making for D. going to be too small?

Was the other movie The Truth About Cats and Dogs? (I looked it up. His name is Ben Chaplin and it he was the actor in both movies).

Was I sent for two CT scans two weeks apart because of poor planning (or poor communicaiton) or is there something ugly growing on my lungs?

If the hat is too small, should I give it to someone else or rip it out and start over?

And so on, until I realize that sleep is hopeless.

Then I get up, play a little online Scrabble (or Lexulous), look up movies on the internet, check out what's happening on Facebook and hope that I will start to feel sleepy again.

But I'm tired today and tired makes me feel melancholy (I have more on that subject but I think I need to save it for another post).

I could drink more caffeine or go take a nap but neither will help me sleep tonight. Don't know if I can help myself, though.

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 been overwhelmed and touched by all the donations I've collected for the Run for the Cure.

Our team, No Pink for Profit, has more than thirty members.

I'm - ahem - tickled pink.

I've raised $1,558.00, way more than I'd anticipated. And maybe all this generosity and enthusiasm have made me delirious but I've begun to wonder, "what if I could make it an even $2000.00?"

What do you think? Is it possible? Want to help?

I always think it's going to be different.

I say to myself, "This round of treatment, I will exercise and write and continue with my daily routine and see if that makes me feel better."

And thent, in the days that follow each dose of vinorelbine and Herceptin, I stay in bed too sick to do anything and lacking the self-discipline (motivation?) to try getting exercise, writing or going about my daily routine.

I don't even bother to eat well (although the soup I made the night before chemo was delicious and easy to heat up, so I did eat lots of that) or even do the easy things that might help (I was on the phone with my writing buddy and she asked if I'd been drinking hot water with lemon and ginger. Easy to prepare and she swears by it, yet I had completely forgotten).

I don't even drink enough water.

I just wait until the weekend when I know I'll feel better (unless I get sick, as I did yesterday and had to miss dinner with friends and my beloved book club).

I'm fed up.

Fed up with losing a week out of every month.

Fed up with having to constantly worry about my energy levels and not overdoing.

Fed up with not  having answers and having to worry.

Sometimes I amuse myself (and no one else) by announcing, "I'm done. That's it!"

But I don't really mean it. 

I know where I'd be if it weren't for all the chemo and the Herceptin. And I know that it's worth it.

And who knows? Maybe next time will be different.

A couple of weeks ago (has it really been that long?), Nonlinear Girl, presented me (and a few other bloggers with the Lemonade Award.

What it's supposed to mean is that the recipients have been handed some lemons by life and have gone on to make lemonade. I love Nonlinear Girl's blog. I met her at BlogHer last year and have been reading ever since. She seems like someone I would hang out with if we lived closer to each other (she's in Portland and I'm in Ottawa), except that she's smarter and more talented than I am.

She's also expecting twins in a month or two. I am thrilled for her and in awe.

But back to the award. Recipients are supposed to tag ten other bloggers but I think I am going to follow Nonlinear Girl's lead and just choose a few bloggers I like, who write bravely, humourously and well about their lives and the obstacles they have had to overcome. There is no pressure on any of them to pass this on, I just enjoy them and think you will too.

So the award goes to:

Lene

Princess TinyButt

Sara

The Maven

I've been on Herceptin for nearly five years. I think I'm alive because of it. And I'm fervently hoping that my heart bounces back quickly so that I can continue with treatment. 

However, should I have any kind of relapse, funding for Herceptin will be withdrawn, despite the fact that studies show that switching up treatment regimens (pairing another drug with Herceptin) can give good results.

Earlier this year, breast cancer patients and advocates in Ontario fought for and won access to Herceptin for women with early stage breat cancer. Now, we must lobby to extend this access to women with metastatic breast cancer who experience a progression of the illness.

From the Canadian Breast Cancer Network:

We are reaching out to you today to let you know about the inequitable access to care for people living with HER2-positive metastatic breast cancer in Ontario.

The Issue:

HER2-positive metastatic breast cancer patients in Ontario who received a treatment called Herceptin when they were first diagnosed and who responded well to initial treatment are being denied access to the treatment should they relapse.

This is happening despite recommendations from Ontario oncologists and clinical evidence included in a report from Cancer Care Ontario, which states that the continued use of Herceptin in combination with chemotherapy is a valid treatment option for those whose breast cancer has progressed on Herceptin.

Even though there is evidence to support Herceptin beyond progression, government funding is not in place in Ontario – one of the only provinces to deny this treatment regimen for HER2-positive metastatic breast cancer patients. The BC Cancer Agency recently approved funding for Herceptin for HER2-positive metastatic breast cancer patients who have been previously treated with it.ii
How can YOU help?

Share your story! If you or someone you know has HER2-positive metastatic breast cancer and are currently being denied Herceptin treatment in Ontario, we want to hear your story. For more information, please contact me directly at 613-230-3044 ext. 221, amacisaac-butler@cbcn.ca

Having been a patient for most of the last seven years, I can tell how some things have changed.

One thing that seems quite different is pain management. After my mastectomy and my diagnosis of metastasis in 2006, I was given loads of painkillers - morphine, Oxycontin, percocet, Tylenol with codeine and others - all in small amounts. I never finished a prescription and I always brought the leftovers to the drug store for disposal.

Fast forward to my brain surgery last fall. I was fortunate to be sent home after two nights in the hospital (you heal much better at home). The last thing that they sorted out was pain management. I remember a team of doctors standing around my bed. One of them asked, "What has worked best for you in the past?"

"Oxycontin," I replied without hesitation. I never felt particularly high while taking it but it very effectively killed the pain.

Several of the doctors exchanged glances. One shook his head sadly and said, "Well, we'll figure something out."

I was sent home with hydromorphone, another opioid. It certainly diminished the pain and since I'd never had brain surgery before, I can't compare it to anything else. I did think it was odd that they would ask me what worked and then send me home with something completely different.

In less than two weeks, never taking more than prescribed, I ran out. My surgeon is really hard to reach, so I called my family doctor. She simply asked me how many I thought I would need. When I hesitated, she said, "You need to take care of the pain in order to heal. Addiction is the last thing I'm worried about."

My doctor has known me for more than 30 years, so I decided she was probably right. And if she wasn't judging me, why should I judge myself? Sure enough, I took painkillers for the next couple of weeks, and I didn't finish the prescription.

I was reminded  of all this on Tuesday, when I was told that I could manage the pain after portacath surgery, with "whatever you'd take for a headache."

It hurt a whole lot more than that and, in the end, I was glad that I'd held onto those last few pills in the hydromorphone bottle. I took the narcotic for two nights and I was able to sleep. It didn't completely eliminate the pain but it did a pretty good job of masking it. And I only needed it for a couple of days.

I've heard from others who've been through portacath surgery who've said they had more than Tylenol level pain. I couldn't swear to it but I'm pretty sure they gave me something stronger when I had my first port put in, seven years ago.

I don't mean to diminish the horror of addiction and I understand that doctors wish to remain vigilant. However, pain medicine was developed for a reason and I would think that after surgery would be a prime time for it to be prescribed.

My friend Lene has written extensively about chronic pain management, the risk of addiction and the patronizing attitude of many medical professionals. If they wouldn't give a prescription to an adult woman with no history of addiction for just a few days, what must life be like for those who live in chronic, agonizing pain?

There's got to be a better way to address the problems of addiction and pain management. Unaddressed pain costs lives, too.

So Barack Obama is in my town as I write this. He has had a meeting with the Prime Minister, some lunch and then they took him for a beaver tail (deep-fried flat pastries) in the market.

Why am I embarrassed by this?

I can't help but think, though, that he would have enjoyed the beaver tail more if had gone skating first.

I hope he was advised to have the Killaloe Sunshine and not the Nutella.

Traffic in my neighbourhood is a mess right now, as I live on the way to the airport. I really pity anyone who had a commercial flight out of the city today.

The good news is, I have a new port and it works.

The bad news is that I found it a much harder experience than I had anticipated.

And there's some other stuff that's kind of in between good and bad news. I haven't decided yet.

My friend Lise picked me up early on Tuesday morning and we arrived in plenty of time for my 8am appointment. I really, really liked the nurse doing intake (and I told her so when I left) and Lise stayed with me for as long as she was permitted.

That part was just fine. I didn't even mind too much when the nurse had a hard time accessing a vein for my IV - I was in for a new port precisely because my veins are hard to access.

Tasha, the nurse, told me that I had ruined her "one poke record." I reassured her that she shouldn't blame herself and that it shouldn't even count because "I'm special. How many people go through years of chemotherapy and actually live to tell the tale?" She liked that and agree that I am pretty special.

I spoke with Tasha about my expectations about my port surgery, "In. Out. All on the left side" and she confirmed that was what was written on my chart.

Unfortunately, the surgeon had other ideas. 

He came to see me with the consent form, as I lay in a hospital bed, in the hallway, already hooked up to IV. I was all by myself. I can't remember his exact words but he told me in graphic that he would have to "rip through" scar tissue to put a replacement port on the left side. He said that the possibility of infection was much, much higher and that it would be "100% more work" for him. 

But it was up to me.

I still don't know what I should have done and I felt very pressured. I could have asked for more time and put off the surgery. I could have insisted that he try the left side.

I chose the path of least resistance. I signed the consent form and the surgeon said, "This is what I would tell my wife she should do."

The surgery itself was pretty uneventful, although I was told I would forget and I have not. I know that I slept through lots of it but I remember him sewing up the right side and most of the removal on the left.

When I had my old port put in 6 years ago, there was only one surgeon, Dr. Waters, doing portacath insertion. Now there are seven and Dr. Waters has moved on to other things. The surgeon from last Tuesday told me that portacaths are usually always on the right side unless the patient is going to have radiation on the right. I've already had right-side radiation, so, according to him,  there's no reason not to do the right side. 

However, while I was drugged up during surgery, that Dr. Waters actually preferred left side ports, so I know there is at least one surgeon out there who thinks left-side ports are just fine. 

In addition to the vanity of keeping my scars on the same side, I was concerned about the fact that my right side is already tight and sore (I seldom feel comfortable wearing a prosthesis) and I have truncal lymphedema (which no one seems to understand, except the folks who have it). If cuts to the arm can make arm lymphedema worse, then wouldn't surgery to the chest worsen truncal lymphedema?

Perhaps this was the right decision. Maybe it would have been excruciating and difficult to put in a port on the same side as my old one. I've just found doctors and nurses to be dismissive of the pain in my chest and ignorant of truncal lymphedema. It's hard to accept reassurances that the port won't make these things worse, when doctors have never really understand that they exist and are serious in the first place.

I've been really, really sore for the last couple of days. They told me that Tylenol would be enough for the pain but I was glad that I still some more serious painkillers on hand to get me through the nights. I'm not sure if the medical team just underestimates how much it all can hurt or if I hurt more because the right side was a mistake.

The port worked beautifully on Tuesday (the same day as the surgery). Tomorrow, I'll have my bandages changed on both sides and the needle and tubes removed that have kept it accessed. That should make me more comfortable.

It's been a tough couple of days, compounded from the usual challenges of treatment weeks.

Hopefully, by the weekend, I'll be feeling much better about all of this.

I once had a colleague who was a former Fleet Street journalist. I can't remember his name but I do remember a story he told over a particularly boozy dinner.

"The worst kinds of press releases," he said, "keep all the best bits for the end. That's just not how it should be done. It's like reading a news story that says 'A crowd gathered at Buckingham Palace today. There were also fire engines and ambulances. The corgies were brought out to safety. The Palace burned to the ground. The Queen is dead."

As I went on to work in communications, I kept that anecdote in mind and tried to make sure that the most important facts were kept in the lead of my news releases.

But this is not a news release and I can tell my story in way that pleases me.

I had an endoscopy yesterday.

I wasn't terribly worried when the secretary at reception couldn't find any record of me. I credit the Ativan for that. You still feel the anxiety but it's further away. Almost like it's someone else's anxiety.

She must have found me in the end, because I was called into the endoscopy unit, given an id bracelet and told to change into a robe.

The endoscopy unit at the Civic Hospital could use a facelift. The paint was peeling off the walls in the waiting room and the beds in the prep and recovery area are separated by curtains. My neighbour and I learned a lot about each others' medical histories and bowel movements.

Every nurse I spoke to was very taken aback that I should have metastatic breast cancer at my age.

Every one of the nurses was really kind.

The nurse who took my history and prepped me for the anesthetic noted my "crappy veins" but she got the vein accessed in one poke, so major kudos to her.

My bed was eventually wheeled into the room where the procedure would be done. At this point, I met Dr. A. for the first time. There was another doctor with him who introduced himself so quickly that I didn't catch his name. This second doctor, who I assume was a resident (why don't they introduce themselves as such? Residents always say, "I work with Dr. So and So." They never say "I am learning from Dr. So and So. Do they think the patients can't be trusted with this information? This really bugs me because I can always tell they are residents and I would be much more forgiving if they were honest with me) began to very rapidly list off all the horrendous risks of the procedure and then handed me a waver to sign. 

It's a good thing that I had done tons of my own research (and that I had taken the Ativan) because I might have demanded that they wheel me out of there.

Dr. A. asked me if I had signed the waiver and if I had any questions. I said, "I just want to get this over with."

I mentioned my strong gag reflex to Dr. Resident. He instructed the nurse (pompously? Am I being biased?) to give me some extra shots of the anesthetic spray for my throat (I had the distinct impression that the nurse was going to do this anyway but perhaps I am biased). Then they hooked me up to the drip, placed a plastic frame with a hole in it in my mouth and shoved a tube down my throat.

I then proceeded to gag, choke and gasp for breath. Tears streamed down my face. 

I'll never forget the nurse who gently held my head and spoke comfortingly to me.

It's amazing how big the endoscopy tube looked to me. There's no way it could have  been that big in real life.

I heard Dr. A. say something about how studies had shown that the gag reflex was greatly diminished when Fentanyl is administered.

I heard Dr. Resident sound surprised.

A nurse administered Fentanyl via my IV. And then I was really, really stoned (I just read that Fentanyl is 100 times more potent than morphine and I had a cocktail with other sedatives).

Not sure if I passed out or not but I was pretty woozy. I know they called T. to come and get me. And I know that one of the nurses suggested I try and get dressed.

I sat up and nearly puked. The nurse got me to lie back down again.

Lather, rinse and repeat a few times.

One of the nurses gave me some apple juice, which helped.

I asked what drugs I had been given. A nurse looked that up and said with surprise that I had been given a drug in the Valium family and Fentanyl. She said, "No wonder you're so wasted."

I heard someone mention Gravol (known as Dramamine in the US). I now understand why they give it to me each time they give me Demerol at the cancer centre. They gave me a barf bag.

I texted T. to see why he still hadn't arrived. He texted back that he was in the waiting room. I told him to come get me. He said that the secretary wouldn't let him past the waiting room.

If he wasn't allowed past the waiting room and I wasn't allowed to leave without him (nor could I walk on my own), we were kind of stuck.

One of the nurses went to get him.

Before I left, Dr. A. came to talk to me. He said that I am to come to his office in around four weeks, at which time I will get my results. He also told me that there were no visible tumours (see what I mean about burying the good stuff under a whole pile of details?).

I went home and slept for 6 and a half hours. It would have been longer if T. hadn't come into the room to check on me. I was pretty dopey all evening (giving all my online Scrabble opponents an unfair advantage) and hit the hay before 10.

My throat hurts today and I'm still kind of tired but I did get out for a run (it's 10C here today that's 50F), so I guess I'm recovering pretty well.

In a months time, I'll find out if the biopsies revealed any pre-cancerous cells. Or if I have celiac disease. And Dr. A. promised that if they don't find anyting, he's going to want to do a colonoscopy.

What fun.