Understand, then Advocate

Last week Liz Szabo from USA Today sent me a note asking me if I'd be willing to talk with her regarding the revised guidelines regarding breast cancer released by the USPSTF.

So I said, "Absolutely, I'd be honored."

I'd already been following much of the discussion and was amazed how quickly the issue flared.  One by one all the major cancer institutions and hospitals published their own recommendations and made their physicians available for interviews. Still, there's a lot of information/misinformation about the recommendations we need to keep in mind.

1) The guidelines are recommendation developed by an independent panel made up of representatives from excellent organizations, universities and think tanks.  They ranked/rate six different methods for breast cancer detection.

2) The recommendations were based on scientific analysis of existing data -- I have the actual report -- its about twelve pages long.  It doesn't readily condense to tweets, blurbs or anything like that, unfortunately.

3) Mammography has been controversial for a long time. Nothing new here. It under-detects some cancers (like mine) and over detects others that may not have ever developed into invasive disease.  Mammography is problematic in detecting cancer in younger women.  Most of the young survivors I know and have spoken with FOUND THE LUMP/discharge/change themselves and pursued their concern aggressively.

4) The recommendations  have been the standard in Ireland since 2000. Are the comparative rates of breast cancer widely different?  I don't know but will certainly check that out. I would be surprised if they are.

5) The recommendations are for "the average woman," the woman without risk factors. Women with risk factors are excluded.  How those risk factors are defined will become an issue.  I've already asked MD Anderson how they define 'risk factors' and as yet  have received no answers.  When I was diagnosed ('98) the doctors who examined me felt that two great aunts with breast cancer and an extensive family history of cancer on both sides of my family did not constitute a "risk factor."  I said "oh, really?" then and would use the same tone of voice now.

All this said I wouldn't budge from the 2002 recommendations for a minute -- but not for the reasons you might think.  The beauty of the existing system is:

1) It gets women in the doctor for some minimum of health care on an annual basis when other problems might be discovered;

2) We already have millions of uninsured women who are NOT being screened -- do we really want to add more to a potential public health catastrophe?

3) The health of the US public is already bad, growing heavier and exercising less (obesity a factor for BC);

4)The guidelines are based on past data and make no provision for the existing health care problems existing in the US.

I'm long winded but understanding is truly critical.  We need to advocate for better detection methods for younger women -- the 50% under the median age of 61.  We need to advocate for prevention, and continue advocating the benefits of the healthy lifestyles. We need to keep up the great example of understanding our own health.

So when Liz asked me if I thought the guidelines were fair?  I said that numbers are numbers (I'm not going to deny a statistical modeling process I can't even describe) but no number or guidelines are fair if applied by insurance carriers to deny tests to women or men who need them. No way.  That isn't fair at all.

Best regards to all of you,

jody

The Measure of My Days

Psalm 39:4 "LORD, let me know my end, and what is the measure of my days; let me know how fleeting my life is! (RSV)

In a perfect world we live out the "measure of our days" in good health then gently fall asleep, never to wake again.
       That's death via Norman Rockwell. 
       In the Norman Rockwell world 70% of Americans want to die at home. In the real world, only 30% do.
       Last year Atul Gawande brilliantly described the emotional and factual cost of end-of-life care in his award-winning article, "Letting Go," published in the August 2, 2010 issue of The New Yorker.  He dared to ask at what point medical treatments intended to extend life actually result in more intrusive treatments, more suffering and a greater financial burden on the patient's family.
        The story - or what he called the 'dire reality' -  was told through the life of a mother who had inoperable non-small cell lung cancer. She was young. She was hopeful. The unraveling  tale of chemotherapy followed by increasingly intrusive interventions to counteract the side affects accumulated and spiraled down, one episode after another. How could her story have been changed?  Could it have been? Can we direct the trajectory of our final months?  
        I believe we can.
        You may find me off center, talking about death on the heels of a gracious holiday and in the advent of another. I do so because I fear death much less than unnecessary and unwanted care. Intubation. Chest tubes. Forced feeding. IV antibiotics to stave off this infection or that. CPR.  
       Hang around health care long enough and you'll find it won't take long before you find what you DON'T want. And if you live life on your terms, and pride yourself in doing so, you'll want to die on your own terms as well as much as is humanly possible. To do so you need to write it down.
        "You only die once," Gawande wrote.  
        I also write this today because I've just returned from dealing with an 88-year old man who has not thought through his end-of-life issues. This has to do with how you want to live and be treated, not who will handle the funeral. He has an opposite problem from the young women Gawande wrote about; who so wanted to live she couldn't understand death was near.  
         My father-in- law still thinks he'll always drive his car and take care of himself.  He never considered there might be a point where he couldn't. And the rest of us, his children by biology and marriage, are left deciding the issues for him. Things he used to care about, like filling the bird feeders before the winter winds hit, or making sure the water softener has been cleaned out, are immaterial now. He moves from his bed, to the kitchen table to his lounge chair, where he quickly falls asleep. He doesn't think he's dying either, but his mind diminishes by the day.  It's too late for him. 
        We all need to make our wishes known. Or someone else will.  Write your own last chapter.  Outline it.  Think it through and write it down. It's your life and it will - hopefully much later rather than sooner - be your death. November, if you didn't already know, is National Hospice and Palliative Care Month.  In this incredible video, Engage With Grace posted by Renee Berry, speaker Alexandra Drane encourages all of us to answer these five questions:


Five simple questions:
1) Where do you fall on the medical spectrum: from supportive and comfort care only to take all measures possible?
2) If there were a choice, would you prefer to die at home, or in a hospital?
3) Could a loved one correctly describe how you'd want to be treated in the case of a terminal illness? 
4)  Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?
5)  Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advance directive?  


Cancer and its treatment teach you about mortality. It can leave you feeling powerless. Turn the table and empower yourself. By determining what you don't want you very well might define how strongly, how vividly, how incredibly, you are living your life today.


All good things to you,
Jody

Progress in Breast Cancer Treatment Shows in Recurrence Rates

A new study looked at survival of moderate or advanced breast cancer patients between the 1980s and 2000s. During those two decades new treatments and advancements, greatly decreased the recurrence rates.

I read the attached and two areas were of great interest. During that time Herceptin was made available and Her2 positive cancers became much easier to treat. Also, estrogen driven cancers used to have a consistentlyhigh recurrence rate but now it is much lower.

While the rate changes vary, overall the recurrence rate has fallen by 50% in those twenty years. This makes me wonder what can happen in the next twenty years in terms of cancer treatment progress.

While breast cancer is the most common cancer among women, we must not forget about other cancers and their recurrence rates.

But in the meantime, I will call this progress.

Your Mind on Chemo

Mentioning chemobrain to a group of cancer survivors is the equivalent of yelling "FIRE" in a crowded theater.
             Yesterday it was impossible to miss the collective shouting when the Radiological Society of North America (RSNA) announced the results of a small study demonstrating the physiological process behind the symptoms that plague so many of us.
             Now there is a scientific explanation behind that freaky and disabling symptoms that make up the word "chemobrain." While sometimes used derisively, sometimes jokingly, sometimes teasingly, there is now no getting around the fact that administering chemotherapy causes significant and demonstrable changes in brain metabolism.
            Makes sense, you think.
            And it does.  But common sense isn't science; and even those medical professionals who listened sympathetically to their patients had little to offer in return.  Part of the answer came in the way the scientists approached the problem.
            Instead of studying chemotherapy's effect on the brain's appearance, Rachael A Lagos, D.O., and colleagues at the West Virginia Univeristy School of Medicine instead looked at its effect on brain function through an analysis of PET/CT brain imaging results utilizing special software.

             What a difference that made.  The proof was in the scans where "statistically significant decreases in regional brain metabolism" were noted.  Those changes were seen in areas associated with contentration and memory.
             Long story short:  your brain has as much difficulty processing chemotherapy drugs as the rest of your body does.

By now you all know that Robert Bazell, heath/science correspondent and author of The Making of Herceptin covered the story for NBC Nightly News and a crew came to talk with me yesterday morning about my chemobrain experience.
             My experience may have been different from yours.  Mine may have lasted longer. You may have had sypmtoms that disappeared overnight.  I don't know how much of the cognitive problems I encountered can be attributed to chemo or simply the totality of treatment --  radiation, multiple surgeries, and tamoxifen, the ultimate in brain scrambling medications.  But I don't need a study or PET/scan of my brain to say that definitively about Tamoxifen.  After seeing this short and doable demonstration from a radiation resident (the RSNA study was a poster session, mind you) from just ONE aspect of cancer treatment is more than enough for me.

Exercise works for easing chemobrain. Truly does.

Now where we need to go is to continue the discussion on working through the disability. That's why the crew filmed the additional segments that they did.  Those weren't random.  Both cycling and quilting were activities I took up AFTER treatment to help cope. There is no doubt that physical exercise, intense aerobic activity, is one of the best possible things you can do to cope with chemobrain, fatigue, and regain strength and vitality.  Taking up quilting involved learning a compelte new set of tasks, and yes, not seriously injuring myself or anyone else when using a rotary cutter.  A third way to help anyone suffering cognitive impairment would be assistance with organizational skills.  Anyone who knows me and looks at my waning organizational skills can attest to that. A good text on ADD probably woundn't hurt either.  Stress management is also key.

Quilting is something I took up after cancer treatment....it's soemthing creative and stress managment all in one. Here I'm using English paper piecing of 3/4" hexagons. There's no way to machine piece them accurately.

With Debbie Strauss of NBC News.

          When I watched both the broadcast and web footage last night  I was reminded that for many of us, the cancer itself wasn't a problem but recovering from treatment WAS.  While we were talking I told correspondent Debbie Strauss that during those difficult months I remember staring at a blank piece of paper trying to write a simple paragraph.
           A paragraph.  Something I used to do in my sleep.  Something I could do upside down or inside out.  No, writing a paragraph has never been the same.  But never has the sense of accomplishment carried such a sweet ring, either. And that will always be enough.

 
More where this came from:
Reserarchers Find Evidence of Chemobrain
Healing from ChemoBrain Gradual

BoingBoing: Chemobrain....Isn't All in Your Head

Great blog on chemobrain  AnneMarie Ciccarella and this recommendation: Your Brain After Chemo, by journalist Idelle Davidson.

                                                                             #   #    #

Inflammation and me

A few weeks ago I had my evil toe infection and was on antibiotics which meant I was off  Methotrexate for three weeks. Methotrexate keeps my RA and its inflammation in check. But antibiotics and MX don't work together. Or if I feel I am getting a cold, I am not supposed to take my MX either.

So week one I felt like I was getting a cold so I skipped it. Week two my stupid toe started and I was on antibiotics so I skipped it. Week three I was still on antibiotics for my stupid toe so I skipped it. Then I had two weeks of my MX injections. Then I went for my regular blood work on Tuesday to check my blood for evil things related to RA and its treatment. No big deal.

Then Wednesday I am happily cooking away, having fun, enjoying myself, and I missed a phone call. I checked my voice mail a few minutes later to find one of  'those' messages.

"Hi this is Debbie from Dr. K's office calling about your blood work yesterday. Can you please call us when you can? We are here today till 430 and then back on Friday. Its not urgent (hah!) but please call."

Of course, I called immediately. I hate those messages with so much subtext behind them. Debbie answered and said she had the results of my blood work and wanted to talk to me about them.

Apparently my inflammation levels were up and she wanted to know if I was in the middle of a bad flare up. I said no, more of the usual but nothing bad. But then I told her I had been off MX for three weeks and only back on it for two weeks. She felt that would account for the increased levels but to be sure to keep my appointment with Dr K next week.

So its only inflammation but it would make sense that I have been feeling like crap. And yes I'll keep my appointment.

Lung Cancer Doesnt Get Its Fair Share

Lung cancer affects half as many women as breast cancer does each year but kills twice as many women. And its five year survival rate is 16% or for Stage IV, 4%. To put it another way:

"An indiscriminate killer, lung cancer takes more lives annually than breast, prostate, colon and pancreatic cancers combined. The disease has not generally received the public attention or research dollars in proportion to its devastating lethality. Lung cancer receives just $1,442 in federal research funds per death, compared with $26,398 for breast cancer and $13,419 for prostate cancer according to an NIH study. Factor in private donations, and the funding gap becomes even more staggering."

Lung cancer is not the only one that is indiscriminate. All cancers are indiscriminate but its time that other cancers get the notice that go to the headline cancers - breast, pancreatic, and prostate. I call them headline cancers because they grab the headlines. But there are millions of Americans dealing with a lifetime in cancerland which is not the same as life without cancer.

November is lung cancer month. Did you even know that? You couldn't miss the pinkification of October..... Lung cancer, and other non-headline cancers, need their fair share of funding, research, and awareness.

Library series

I am so excited for this library event! Some of the photos will be up on display starting December 1^st, check them out. On December 10 at 7pm I will be giving a short presentation about this journey Stupid Dumb Breast Cancer has taken me on. While the photos are raw, graphic and uncensored my vocabulary will be guarded, I promise.  I want people to feel comfortable bringing young adults and teens to this. It is so important for them to see not just the images but to see the support that friends and family give. How we as a community, family, girlfriend, father empower each other to get through the hard times. With that in mind bring a friend. This is a battle we all are fighting and we need friends to battle with. Make it a save your breast date. If you bring a friend The Dazzle Store in Manlius is offering 10% off coupons to you both! Great store showing fantastic community support, if you haven’t been to the store you need to check it out. Check their Facebook out https://www.facebook.com/stupiddumbbreastcancer?ref=tn_tnmn#!/thedazzlestore?fref=ts or their website www.newdimensions1.com Thanks so much to Dazzle for adding some sparkle to this event.

The community has been incredible with their support and it really continues with this event. The library will be giving free a coffee to anyone who purchases a shirt! The staff at the library especially Brenda has welcomed Stupid Dumb Breast Cancer with such enthusiasm it is truly amazing.  This event is not only showing everyone the real side to breast cancer but raising the awareness to a new level. I am so proud of what it coming out of this journey. Thanks to everyone involved!

Rosie Posie

We love you Rosie 

Oh yes we do

We love you Rosie

It's true

We love your smile 

and drunk eye too

Oh Rosie I love you! 

Sung to the jingle of "Healthy, Normal, American Boy" from the Bye Bye birdie musical. Please don't judge! 

I would be lost without you, like in a scary dark place.  You understand when I'm sad and can't explain why. You get that sometimes depression hits at the happiest of moments, those are the times you dry my tears. You know when to tell me some story that gets my mind off what I'm thinking yet makes no sense. You knew that our tattoos hope, love, and live would be just what we needed to start our battle against stupid dumb breast cancer. You knew that our family is strong in our numbers and it's forever. You always know when to hug me and when to let go, which is never. You are there for the boys and for Tom like an auntie should be. You are my Rosie and I love you. 

Happiest of birthdays to my Rosie who always knows how to make my tiara shine! 

Xo

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

it gets better. and it can get better now, too.

Chances are very good that you've already heard of the It Gets Better Project, which was started in response to a series of suicides. Young people (some as young as 13 years old) are choosing to kill themselves rather than continue to deal with being bullied or shamed.

I love this powerful, touching and often funny series of videos aimed to give hope to young (and older) teens who are feeling depressed or alone because of their real or perceived sexual orientation.

This one from Pixar is the favourite in my house.




A day or two ago, The Maven shared this video on Facebook. These kids are saying that things need to get better now, not just in the future. It's brilliant and I am in awe.

Reteaching Gender and Sexuality from PUT THIS ON THE MAP on Vimeo.

I failed the unhealthy quiz!

So in my prowls around the internet, I came across a list/quiz of ten signs you are unhealthy. I thought, that MUST describe me. I was so happy to find out it did not describe me. Which means there are plenty of people who are less healthy than me out there. And here are the ten signs:

1. Your sleep pattern is not what it should be.
2. You have become an apple
3. You suffer from fatigue
4. Your urine is dark yellow
5. You snore louder and more often
6. You have to scratch all the time
7. You get cracks in your lips at the corners.
8. The quality of your skin is poor.
9. You always have a cold or the flu.
10. Your bowels are not regular.

Now I am not claiming that my sleep is perfect or I never get fatigued because I do. The list claims that one of the key reasons for fatigue are thyroid problems but since I don't have a thyroid that is a moot point for me. I also have RA and fibromyalgia which cause fatigue.

I also may not be the skinniest I have ever been but I don't suffer from the rest of these really at all. I also get plenty of exercise (believe it or not I do 60 minutes of cardio 3 times each week followed by weights and stretching).

But I digress. I am not all that healthy but I failed the unhealthy quiz!

#BlackLivesMatter

I don't write in this space very often these days and I don't know how many people still read my words. I'm not sure if I've done a good job of expressing myself. My friend made me realize last night that I have a responsibility to use the platform I have, to say something to anyone who might be willing to listen.

Yesterday evening, I sat down at the computer to check Twitter, as a stalling tactic before cleaning the kitchen. It was well past midnight when I stood up again.

I was reminded as soon as I logged in that the decision of the grand jury in Ferguson, Missouri - about whether or not to indict the police officer who killed a young unarmed black man - was due to come down shortly. In the end, it took a couple of hours for the announcement to be made. Though most people commenting in my Twitter feed were not surprised by the outcome (the delay in announcing had made many suspect that the result was a foregone conclusion), they were outraged. This was exacerbated by the terrible way in which the grand jury handled the release of the verdict: at night, with many hours of anticipation during which the world saw heavily armed soldiers and military tanks line the streets of the town. The lengthy speech made by the prosecutor seemed designed to fan the flames, as he first blamed social media and then further trashed the reputation of a young man who is no longer alive to defend himself.

Last night, I didn't comment much, choosing instead to share the words of others, mostly black women and men directly affected by this decision and overt and systemic racism. I felt it was my place to listen and to share their words. You can read all the Tweets I chose to share on my Twitter feed. There was so much more and I could not look away.

Eventually, though I had to go to bed. One of the last things I saw were the words of a black friend, saying that it's not enough for those of us with loads of white privilege to express solidarity. We need to do more.

She's right.

We need to do more because of what happened in Ferguson.

We need to do more because a 12 yearold black boy with a toy gun was shot by police officers in a neighbourhood park.

We need to do more because there are so many more stories like those I've just mentioned that don't even make the news.

We need to do more because racism is alive and well at home and around the world. And yes, that applies to those of us in Canada, too.

I'm still figuring out what “doing more” means for me. Here, to begin, are my own personal guidelines for dealing with racism in my world. I don't always succeed in adhering to them but I'm working on it:

Speak up when I see racism in my own community, city, country. Every time, even when it makes those around me uncomfortable.

Talk to my kids about what happened in Ferguson and about racism. Often. And not just when it results in someone's death.

Listen when others share their experiences. Ask how I can be supportive. Follow through.

Never be defensive or fearful when others raise the subject of race. Accept that when a person of colour says, “racism exists here”, “that is racist” or even “what you did was racist”, they are stating a fact that hopefully can be fixed and not saying that I'm an irredeemably horrible person.

I'm sure there's more. Like I said, I'm still figuring it out.

Every year, the adults on my spouse's side of the family make donations in each others' names instead of giving Christmas presents. In past years, we've donated to the Stephen Lewis Foundation, EGALE,  the Canadian Breast Cancer Network, the Ottawa Hospital Foundation and the Ottawa Food Bank. This year, I'd like to propose that my family direct our donations to those working to bring an end to racist inequality and injustice. I'd suggest that those of you who can, consider doing the same.

And if you have advice, as to where donations should be focused, please share. 

Further reading:

THE NATIONAL BAR ASSOCIATION RESPONDS TO THE GRAND JURY’S DECISION NOT TO INDICT POLICE OFFICER DARREN WILSON IN THE SHOOTING DEATH OF MICHAEL BROWN

Dear White Moms 

Justifying Homicide (why Darren Wilson was never going to be indicted for killing Michael Brown)

Ferguson isn’t about black rage against cops. It’s white rage against progress.

books are my friends

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

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

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

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

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

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

but i have an excuse (actually i have a few)

I bailed on National Novel Writing Month on the first day, having written just under 700 words.

I felt like there were too many other interesting bits of writing that I wanted to do, including continuing to edit last year's novel.

And then my life became insane. I've been really hard on myself for all the things I'm not doing lately. This week, though, I've had two people who are very important to me (my coach/therapist and my friend DM) listen to me unload and then tell me that I would have every right to feel overwhelmed with a fraction of what I've got on my plate.

I tend to be hard on myself because I don't work outside the home right now. If I don't go to a job I feel like I should just sail through my other commitments. It felt really good to list everything going on in my life and have two women I respect offer support and sympathy. I've decided that I need to cut myself a lot more slack.

I can do NaNoWriMo next year. I'm OK with that. But I did feel a pang when my son sent me this video:



NaNoWriMo was a fun kind of crazy. I just couldn't let the rest of my life go to do it this year.

Generic drug prices going up

Brand name prescription drug prices are sky rocketing. The silver lining for all of us patients is that generic drugs would become available at a much lower price. But now those prices are going up as well.

In the US, the government does not negotiate drug prices or mandate generic drug prices - which have been priced based on the cost of key ingredients - the smart way to do pricing instead of basing it on how much it is worth for the patients life (which is another blog post).

But now, a Senate panel is looking at generic prices and how much they have gone up in the past year. Hmmm..... I smell a rat.

Let me start by saying that I am a huge fan of generic drugs and most of my affordable prescriptions are generics. But my brand name prescriptions cost me anywhere from $35-$105/month. Ouch. And that's mail order prices. Which means I have to keep my chemo brain/fibro fog focus on refilling prescriptions before I run out.

I also am not a fan of too much government regulation. I do prefer when market forces run prices. While I am jealous of drug pricing overseas, I find it unfortunate that certain industries make their huge profits on the backs of American patients.

Now back to that rat that I smell.I suspect that something more is afoot than just market forces on the generic prices. Maybe some collusion somewhere. I don't know what that rat is but I am suspicious. Call me a concerned patient for now but I will keep digging around on this one.

I will not let breast cancer take my holiday

A sample ot today's work

I started at a little before 7am and just finished. Yes it took me longer than normal, yes my back is killing, my chest is sore and yes I only made 13 instead of 16 different types of Holiday cookies. BUT I FUCKING DID IT!! Everyone kept saying "You don't have to make cookies this year", "This can be your year off", "Why bother?" I will certainly explain!
First, I am a baker and I love making cookies for Christmas. I have been doing this for so long I can not even remember when I wasn't making them. I have rules- well just one, stay out of my way! So Tom happily takes the kids out of the house all day. My entire family looks forward to my cookies. Cooking for people you care so much about when made with love is such an incredible feeling. I want them to feel that every year.
Second, I had to show myself that even through all that has happened, how I am feeling and what is up next, I can still do this. I realized how tired I was, so I stopped and didn't make the last three. Maybe I will or I won't, I am not worried. I have to admit cutting the bar cookies was difficult, which pissed me off but made me more determined.
Third, yes they drive me nuts and need to get the fuck out of the kitchen when I am bakin,g but when Tom and the boys came home smelled the house it was worth it. Anthony was excited his favorite kind were coming out of the oven, Sam wanted the three layers "so bad", Julian ate an Anise ball and proclaimed them the best, Ben took his favorite split levels to his buddy's and Tom tried at least four saying that this year his favorite was the Anise,  like Jules. This made me feel like I gave cancer another kick. I know to some reading this you are like "She needs medication!", but right now being able to bake all day is huge. Making it to another holiday is magnificent!! I wanted to just be able to do this without stupid dumb breast cancer getting in the way.



Happy Holidays from the Otis Family!
Taken days after my double mastectomy

Anyone who knows me knows I do three things at the holidays, bake a ton of  cookies all in one day (DONE!!), throw a killer Holiday party (next weekend, whoot whoot) and I have to be the first holiday card you get. Yes I know I could have taken this year off I get that. HELLLSSSS NOOOO!! I hope that when some of you (sorry I can not mail it out to everyone that visits my blog) got your mail today it was in there and you opened it. I even wrote on every single card, in pink of course. I love getting and giving holiday cards and I wasn't going to make this year any different. I love the holidays and my OCD ways!

Yes Ann Marie there is a Santa

I know that people get all pissed off when Target puts their Holliday stuff out after the back to school is done but I don't mind it. The holidays no matter what you celebrate make me happy. I love that my Jewish friends light the menorah in celebration of Hanukah. I love that my Christian friends get ready for the birth of baby Jesus. It's a joyous time of the year so stop bitching and try actually enjoying them. Not just the gifts and the food but the feeling of the holidays. Dig deep it's there. There is a magic in the season I just know it!


When I was about 7 there was a massive storm in upstate NY, I know shocking. We were up at my Uncle Mike and Aunt Carm's on Christmas Eve and the storm hit bad. They lived about 20 minutes from my house and about 20 minutes from my other cousins so no one was going anywhere. We hadn't planned on a big ole sleep over but we went with it. All my cousins were there, we were stuffed from eating but were having a great time so who cares that we were stranded just meant more time screaming at each other in the loving Italian way we do.  Now keep in mind I'm not only the family princess but I'm the baby my cousins are all 10 years older. They didn't care if they got their gifts Christmas morning or a day later but what about Santa??? I was right at the age when my friends were all "there ain't no Santa" crap. And I wondered if it was true! I went to sleep at my Aunties all
snuggled in a bed (princesses get beds all the rest took the floor) and thought "if I have gifts in the morning there is a santa!". I didn't tell anyone what I thought I just dreamt of Christmas morning with my cousins and of My Friend Mandy doll.


I woke up very early and the snow was friggin crazy, it went up to the door and I wondered how we would ever get out. Thank god being the good Italians we had plenty of food! Ok back to the morning. I shoved my sister and told her to wake up she looked at me like I was nuts for what, PRESENTS ugh she was dense. But then I thought she's right If Santa was real there'd be gifts cause he would know where I was, if she doesn't care there's no such thing and my gifts are at 332 Orwood Place. I remember how bad I wanted that doll and how sad I was. I woke everyone up and we went downstairs to wake the smelly older boys, my brother included.

Holy Jesus and Happy Shamus!!! There were frigging gifts under that tree, a lot. My name was on some "AMIE", holy holy holy he is real. Santa is real. I opened the presents with everyone, there was paper everywhere, yelling and a fried something smelling so good. Then I opened it.... There she was Mandy! Yes Ann Marie there is a Santa! I called Tracy cause ya always call your BFF. Best Christmas ever, ever. I went back to school and told my stupid friends they were wrong Santa is real
and he hooked me up. They agreed Santa was totally awesome and real.

When I think of that Christmas I try so hard to think about how my family was reacting to me. I'm crying as I'm typing cause I see Linda nudging Maria. I see Lori smiling and brushing my hair. I can see my brother laughing with Tommy, Chucky and Dave I thought they were making fun of me. I see my Grandma rubbing my dads shoulders and my Uncle Chuck and Uncle Mike nodding their heads. My aunt Madeline's cooking with Aunt Carma nod their whispering and smiling. I see me playing with my Mandy completely oblivious to them but feeling so filled with love, magic and joy, the energy from them.

 I tell my kids this story and about how I felt and how awesome it was when they give me the Santa crap because that was all real and Santa is real. I stop the story there though to them. But my daddy and my 2 uncles got in their car and drove 2 hours to Lyncourt then 2 hours back to get the gifts. They are the real Santas but the magic of what they did is what the holidays are about. My mother had been gone for 6 years but between the trial and the aftermath I'm sure the hurt was still raw. They just as much as me need the magic of Christmas. They need the warmth, laughter, love and joy. Isn't that what the holidays are about? Giving others and the feeling it gives you! Isn't it about love and life no matter how difficult your life is.

Maybe this story is exaggerated, maybe it only took an hour but I don't care the magic is there. I have some major tests coming up and a very intense surgery and I keep thinking of this time in my life, when my family needed happiness and joy and how they did just that by making the princess happy. And I am forever grateful, forever. As I shine my tiara for my MRI next week and look for new stilettos for the DIEP (need me some Jimmy Choo's) I will keep this memory in my heart. I know this is the season for magic, joy, and hope and I know that my family will be there to fill my house and life with just that!

open letter to vendors who participate in group-buy programs

Dear Vendors,

I love group-buy deals (those you offer through Living Social, Dealfind, Groupon, Koopon, etc.) but I don't love them as much as I did a few months ago. I've had a few experiences that have turned me off group-buying and made me dislike some of the vendors who have chosen to participate.

Here's my unsolicited advice for any vendors contemplating participating in a group buy opportunity:

Don't act resentful, frustrated or even surprised when I call to cash in on my voucher. You may be regretting your decision to participate or overwhelmed with the response but that's not my fault. And if the point of selling these things is to introduce me to your business, then making me feel like my call is unwelcome is not the way to start our relationship.

Don't complain about the low price you set for your voucher. It makes me feel like you're accusing me of pulling a fast one or trying to rip you off.

Don't sell more vouchers than you can accommodate in a timely fashion. I bought a voucher for house cleaning in early October - but the earliest they can come is January 17, 2012. I'm pissed off and our relationship has yet to begin!

Don't add on additional fees that are not mentioned in the voucher. It's not cool to make me pay a "sign up fee" or tell me that the group-buy people "forgot to account for taxes."

Don't treat voucher clients like second class citizens. Unless you've stated this clearly on the voucher, I shouldn't have to wait outside your class/restaurant/spa to make sure that all those who've paid the full freight have been served first and then get whatever is left over.

The goal of participating in the group-buy process should be to attract new customers - ones who will keep coming back. If the voucher experience isn't a positive one for everyone who buys in, then the vendor has indeed wasted time and money.

I know that the group-buy companies engage in some pretty hard sell strategies (I once sat in a cafe and listened to the owner say 'no' several times, in several ways to a group-buy salesperson) but if you've leapt, you might as well make the best of it.

I've had three group-buy experiences so far that have been delightful. Two were with restaurants (Foolish Chicken and Kinki) and one was with a local yarn store (Wabi Sabi). I was already a fan of the chicken place but this just reinforced my loyalty (and I bring lots of others with me). I'd not been to Kinki for years but the experience was so lovely that I'll go again (and again). And the owner of Wabi Sabi was so incredibly helpful and gracious that they've won me over (and I've been telling everyone else to go, too). Those vendors could give lessons to some of the rest of you.

So, vendors, think before you sign up with the group-buy people. And if you decide to participate, be gracious, organized, responsive, welcoming and fair. Don't make me regret having bought what you're selling.

Very sincerely,

a potential customer

Canada Reads 2012

The top five Canada Reads 2012 books were revealed yesterday, as well as the five Canadians who will advocate on their behalf.

Despite my frustrations with how things went down last year and my initial resistance to an all non-fiction Canada Reads, I'm excited. 

The books look interesting and their defenders seem passionate. And almost as diverse as Canadians can be.

I really enjoyed reading last year's book choices. It was the actual debates that set my teeth on edge. If I had been one of the authors of last year's books, I would have been very disappointed in the quality of discussion (except for Sara Quin defending Essex County - she was wonderful). The conversations were generally at the level of a school yard taunts ("Oh yeah! Well I'm going to vote against your book because you didn't like mine!" "I didn't even finish reading your book but I'm going to tear it down anyway!"). There was so little discussion about the actual content of any of the books. How is it that the Canada Reads debates made me less interested in novels I had already read and enjoyed?

But that was last year.

The best part of Canada Reads in any year is reading the books. It's also the biggest commitment. And I've decided to do it.

Will you join me?

The books chosen for 2012 are:

The Game by Ken Dryden (defended by Allan Thicke)

On a Cold Road by Dave Bidini (defended by Stacey McKenzie)

Prisoner of Tehran by Marina Nemat (defended by Arlene Dickenson)

Something Fierce by Carmen Aguirre (defended by Shad)

The Tiger by John Vaillant (defended by Anne-France Goldwater)

and then my hair got did (final makeover post, i promise)

Of the four women being made over, two of us picked our clothes and shoes in the morning and then had our hair done after lunch. I was grateful to be in the afternoon group and have someone else do the work for a couple of hours.





Actually, I did have to do a bit of work. It took concentration to separate those little papers.





You can't really see all of them, but there are THREE little bowls of colout being applied to my head.





This is my favourite part.











And this is why my hair will never again look the way it did when Tony was finished with it. How does anyone do the back of their own head like that?







Thanks so much to Tony from L'Elégance Salon (they don't have a web site or I'd provide a link), the St. Laurent Centre and the Ottawa Regional Cancer Foundation for making all of this possible.



(All photos by S. Sioufi except the last which was provided by T. Vincent)

I find it annoying!

Why, oh why, do we have to have stupid pink ribbons everywhere???? Seriously? I knit and crochet and have tables at craft shows locally in November and December each year. Yesterday I was at a show and there were pink ribbons up in the bathroom. Do we need them? Why?

Every craft show also seems to have someone who decides to plaster pink ribbons on at least half their crafts. I don't think I would mind it if they were equal opportunity ribbons for all the different types of cancer and not just the pink ones.

I don't mind the informative posters you see here and there, its just the stupid pink ribbons that annoy me.

Its not October any more. And I really find them annoying in October. Can't we just get rid of them all? The world doesn't need more pink (ribbons)!

Okay, its Monday morning and I am in a 'mood'. I don't have to work but have to take my father to the doctor today. I want to go to the gym first and a friend may stop by later and the house is a MESS!

And then tomorrow I take my father back to the hospital for another adventure. Meanwhile my husband is threatening to clean while I am gone. The problem with him cleaning is he throws everything he doesn't know what to do with in a bag or box and sticks it in the basement and then I hunt for it for six months as he has forgotten what he put where.

Then the Thanksgiving cooking starts.... which is the fun part.

Maybe I'll be cranky today. Don't tell anyone.

and then it got easier

It's not that I don't have anything else to talk about. It's just that life has been really, really busy lately and when I finally get the time to blog, my brain is no longer working.

I thought I'd continue sharing my makeover photo-story with you. Please feel free to move right along if you're bored with this stuff. Let me know in the comments if you've read anything interesting lately.

Meanwhile, the shoe store was more fun than the changing room:

First I had to pretend to be shopping for shoes, so that A Channel could get some footage.

Check out the heels on these babies.


I threw on this dress so that I could be filmed without ruining the surprise. It hadn't even been among the outfits that I considered but I loved it so much that I thought about changing my mind. Or going back a few days later and buying it. But seriously - where would I wear a second fancy outfit? To the dog park? Buying groceries? To parent-teacher interviews?


Can you tell which shoes I came in with?


It just occurred to me that the ones I chose (#53) look a bit like my old Blundstones mated with the those sexy pumps I looked at when I was still wearing the diva dress. Little boots but with a ridiculous heel.

See that crazy grin on my face? I love shopping for shoes.


Here's a better view of the whole ensemble. The St. Laurent Centre even paid to have my top altered. The outfit is hanging in my closet. I may just decide that I will wear it to the dog park.