The gift for the person who has everything

So here's my big "donate for the holidays" pitch.

If you've been reading this blog for a while, you know I have decided to give back by taking part in Bust a Move, a fundraiser for the BC Cancer Foundation.

Last month, there was a lot of news and kvetching online about pink nausea. And frankly, I agreed with a lot of what's been said.

A lot of us who have been left scarred emotionally and physically by cancer. We're angry, and no amount of pink is going to change that.

I'm not down with buying anything with a pink ribbon thrown onto it as an afterthought. Particularly carcinogen-laden products and junk-foods that are driving cancer rates.

What I am down with is helping fund research at the agency with the best record nationally of helping women survive this horrible disease.

The money raised by Bust a Move will go to the BC Cancer Agency where I received my treatments. It will drive research so oncologists are better able to treat and support breast cancer patients like me.

And I'm also a fan of getting women moving. Keeping fit is just one way I'm planning to keep those cancer cells the heck away from me for the rest of my life.

So for me, Bust a Move simply makes sense.

I have to raise a minimum of $1,000. So, if you are making charitable donations this Christmas season, whether in your name or in someone else's as a gift, please consider giving to the BC Cancer Agency through my fundraising efforts.

You can do this online.

Or if you prefer, you can print a donation form from this page, and fill it out to send with a cheque.

Thank you from the bottom of my heart,

Lori

Does letter-writing make a difference?

If we're friends on Facebook or you follow me on Twitter, you know how angry I was to hear that BC is significantly cutting nurse visits to new moms and their babies.

My interest in this cause is a personal one. The nurse who visited me and my son our first full day home from the hospital came just in the nick of time. We'd had a terrible night of him screaming at me because I had no milk. She helped me immensely in figuring out the whole breastfeeding thing when I was a sleep-deprived, emotional mess.

Not only that, but Cara followed up with me and told me she would come back and visit any time I needed her to. A lucky coincidence was she ended up being one of the nurses who came to the mom and baby drop-in session at the local community centre. Eventually, I was diagnosed with postpartum depression (PPD). Though it wasn't caught in that home visit (I was good at hiding it), being able to talk to Cara was critical to my feeling I was able to open up to my family doctor about the challenges I was having.

Cara was a huge support to us and I don't think I could ever thank her enough. I'm worried that these cuts will mean women give up on breastfeeding and wait longer than they need to to get the help they need for PPD.

Time to act

So with all this in mind, I looked to find out what I could do. I tweeted a CBC radio show that asked for people's reactions. I found out a Facebook group had been created. Supporters of the nurse visit program were encouraged to write to the premier and their MLA, so I wrote a letter telling them my story. I added Minister of Children and Family Development Mary McNeil and NDP critic Claire McNeil to the list for good measure.

So far? Only one form response from the premier's office.

The premier's office response

"Thank you for your email regarding the Healthy Start program. We appreciate the time you have taken to express your views on the subject. As you are aware, government is reviewing the perinatal and child public health services offered by public health nurses, and other care providers, across the province as a component of the Healthy Start pillar of the Healthy Families BC strategy. Our focus is to support all mothers and babies in having a healthy pregnancy, giving all children a good start in life and supporting a healthy future.

As part of the overall Healthy Start program, which is available to all mothers, government is introducing the Nurse-Family Partnership (NFP). This program will offer more intensive care, time and resources to low income, young, first time mothers from second trimester through to when their baby is two years of age. Evidence clearly shows that it is the only nurse home visiting program with a wide and varied range of strong positive outcomes for mothers and children. (emphasis mine - Lori)

Government has a responsibility to make sure public health resources are used effectively to support all families with ongoing or episodic care needs- including those who would benefit the most from intensive follow up. We want to assure you the Minister of Health and his staff are working closely with health authorities, physicians and public health nurses to help ensure the program has no unintended impacts.

Thank you again for being in touch. We are always looking for ways to improve programs and policies and your feedback helps us in that process."

My response
In other words, they likely read the subject line of my letter and nothing else. They told me nothing new and they didn't respond to my concerns, namely, how will they ensure that more women don't give up on breastfeeding, or let their PPD go undiagnosed and untreated.

The writer emphasized the "wide and varied range of strong positive outcomes for mothers and children" in the home visit program. So if there are such positive results, how can this be the right place to make cuts? They didn't say.

So I basically feel like writing my letter and actually giving a shit was a giant waste of my time.

Where do I go from here?

What are my options now?

1. Give up.
2. Respond to their letter and call them on not answering my questions.
3. Find other means of making my voice heard - no idea what these are.

Do mothers need to occupy something, perhaps the premier's office? I'm tired and I'm running out of ideas. I want someone to tell me what to do.

Weekend to End Women's Cancers Fundraiser

Hi everyone. I'm stoked and extremely grateful to announce that Wendy D Photography and Juggernauts team captain Chrissy Watson are hosting a fundraiser for the Weekend to End Women's Cancers. Yep, that's my team (well, Chrissy's team, really) and it promises to be a great time.

For a minimum donation of $20 come and get a fun, fabulous photo by Wendy D. Find out more at the Get Your Pink on! Facebook page.

If you can't make it but want to give to the cause, visit http://www.endcancer.ca/goto/lori_writes or click on the fancy pink badge below.

Walking for Sue

Okay, so it's getting to crunch time with the Weekend to End Women's Cancers. I'm just over half-way to raising the minimum $2,000 and the cut-off for mailing in cheque donations is July 22. (Online donations made by day one of the walk [August 13] will count towards my minimum.)

When I started out, I shared some stories about the people I'm walking for - my cousin Pam who shared her story on my blog, and Joyce, a family friend who passed away last winter.

There is one story I have been hesitant to share. My mother-in-law, Sue, died six months before my husband and I got married. That's her with my husband, he's the wee guy in front, my sister-in-law Connie on the right and cousin John on the left. John's wife, Chrissy, is the captain of the Juggernauts, the team I'm doing the walk with.

Sue had lung cancer, which technically isn't one of the women's cancers I'm walking for. However, lung cancer accounts for more than 1/4 of cancer deaths every year. There was a point when I recall studies indicated that lung cancer rates were climbing for women, though according to the Canadian Cancer Society, those rates are now leveling off.

My point is, whatever the type of cancer she had, the sense of loss I felt when she died was beyond anything I could have imagined. She is the most significant woman in my life who I have lost to cancer.

We didn't know each other for that long. We had only met each other a handful of times before George and I got engaged one spring. I do clearly remember him calling his parents that night. I also remember her excitedly shouting, "Connie, you have a sister!" when I was on the phone with her.

From Tom Jones to Loss, Sadness & Anger
I remember staying up late with her, George and Joyce (who I've mentioned) drinking way too much wine. Sue and I bonded over our mutual fondness of Tom Jones and George Carlin. I remember her laughing at my hungover state the next day. It wasn't long after this that she was diagnosed with lung cancer.

She stayed positive for much of her treatment, which included removing a good chunk of one lung (may have been the entire lung, my husband and I can't remember which it was), chemo and radiation. She cut out a picture from a magazine of the dress she wanted to get for her son's and my destination wedding booked the following spring. And she talked about how much she wanted to see the Mayan Ruins on our trip. Before Christmas that year, she died. December 6, 1997.

I won't go into details. I think most of us have lost someone close to us to cancer. In the end, it looks the same. And in the end, that sense of loss, sadness and anger is similar for many of us, though the reasons behind those emotions may vary. I selfishly felt ripped off. Here was this amazing person who became a part of my life and poof, gone. I was devastated watching my significant other, my father-in-law and sister-in-law work through grief in their own ways.

The Ways I Miss Her
I still miss her in many ways. I miss Sue when:

1) Our son asks about "my other Grandma."

2) Our son does something quirky and I can't ask her whether her kids did the same thing. (Let's face it, moms have a memory bank like no other.).

3) I look at a picture of her and my husband.

4) I look at a picture of her and my father-in-law, her usually laughing and him usually looking mischievous.

5) I hear someone refer to having one too many as being in their cups.

6) I hear Tom Jones' Delilah.

7) I go through my jewelry and see one of her rings.

8) Mother's Day.

9) My husband tells a funny childhood story - I want to hear her version of it!

10) I see the colour peach (it was the colour of the dress she wanted to wear at our wedding - must have been a favourite, judging by the above photo of her with George, who gets a huge thanks for allowing me to share his family photos).

So my point of all this is, regardless of the type of cancer she died of, I miss my mother-in-law. A lot. And if by taking part in the Weekend to End Women's Cancers I help prevent someone else from feeling that mixture of loss, sadness and anger, I'll feel like I accomplished something truly significant.

If you wish to donate, simply click on the pink badge at the top of this story or click here. If you prefer to mail a cheque, there's a form you need to print out on the website which ensures your donation goes towards my fundraising efforts. Or you can do it online with a credit card. If you're feeling particularly brave, you could also join our team. Let 'em know I sent you when you fill out your info online and that will raise another $100 on my behalf!

Thanks again and much love to all who have donated. It really means a lot to me.

A Poem for Pam

The internet can be a beautiful thing. Shortly after I posted my cousin Pam's breast cancer story, her niece Emily (my second cousin? first cousin once removed?) contacted me on Facebook. We have never met in person but chatted online about Pam.

Emily shared this poem with me that she wrote in honor of Pam. I wanted to share it with you. Thank you, Emily, for letting me post this.

Unity

Pink is the ribbon pinned to your sweater, filling your fears with peace as you gently touch it’s smooth and silky material - for you know it’s meaning.
It’s the colour you favored as a young girl, silently dreaming of princesses, wishing you would someday fill their perfectly polished heels.
It’s the colour of these walls that slowly box you in,
It’s your favourite bear whose soft body comforts you when the pain kicks in, who sleeps on the bedside table, silently watching over you like an angel.
It’s your favourite shade of lipstick, the colour of your socks hidden by the long paper gown that loudly crinkles with every breath you take.
Pink are the roses, lifeless like you, so dull yet vibrant, sad yet full of hope -
Pink is your outlet - soft, sweet, and melodic.
Pink is the colour of change, you discover, looking in the cracked mirror as you’re taught how to wear a headscarf, weeping in your husbands arms at the amount of change everything has brought.
Pink has become who you are and what you stand for -
through surgeries and treatments, through salty tears and restless nights, and through the robbery of who you once were;
pink is the colour of unity between women worldwide
race, religion, politics - they are all discarded
for we are all one in pink, the symbol of life.

Someone to Walk for - Part 2

One of the people I am waking for in the Weekend to End Women's Cancers is my cousin Pam. Here is Part 2 of Pam's story in her own words, which details her treatment and support network.

The Mammogram Experience
I finally got my appointment for my first of many mammograms, and it truly was not as bad as what I was told. Here in my hometown we have a breast cancer screening clinic with digital mammography machines and they are amazing. To quote Erma Bombeck (sort of), it was NOT a case of open door, insert boob and slam shut! I will admit it was not comfortable but I didn't find it painful.

TIP: Don't look down! Do you really need to see how flat your boob will go? and what you don't see, won't hurt as bad. But regardless, it was a necessary 'evil' in my journey. After the initial mammogram, I was scheduled for an ultrasound, and then a core biopsy of the actual lump (not pleasant).

My Advocate
While all this was going on, my poor mother was dragged into almost every appointment with me to act as my eyes, ears, and brain at times, to listen and question the medical professionals. Being a retired registered nurse made her invaluable to me both as a professional herself, and my mom. I don't care how old one gets....I still needed my mommy through this! I knew myself that I had what I call "trigger words' that would just set my brain off spinning, and by the time I got myself pulled together mentally, I'd missed the next three sentences out of the doctors mouth, so my mom took over for me at those points.

I also had my medical vocabulary vastly expanded which is a must if you are to understand what is happening and going to happen to your own body. Cancer has a language all its own and my mom lovingly translated it for me even though I know she was truly worried from her core for me. But being a professional, she kept the facts clinical, straightforward and to the point for both of us.

Surgery
I finally got into see the surgeon/cancer specialist and yes there was an anomaly in a couple of cells. I was told that I had DCIS - ductal carcinoma in situ (cancer in the milk duct) and that although what they found was very small (less then 1 cm) it should be removed. I had to make the decision: how much was to go? At 43, I had to decide if I wanted just the lump removed or to have the whole breast taken.

I opted for just the lump and a small section of tissue in the surrounding area removed. Later they would find that there was a microscopic hole in the tumor, indicating that even one single cell could have traveled beyond the breast, so I was scheduled to have a sentinel lymph node biopsy done. Luckily the results came back that all the nodes they had removed were clear of any cancer. Oh Happy Birthday to me. Yes, I managed to have another birthday during all this.

By the time my second surgery was done with the lymph nodes, over six months had gone by. I still had to have 20 radiation treatments just as a precaution to make sure they got all the cancer cells. I was scheduled for my treatments over 5 weeks. Every day I went to the regional cancer centre here in Kitchener, ON, and every day I met with my team of radiation specialists. Somehow with their help and compassion, I managed to keep my sense of humour and my ‘fight’. After my last treatment, I think I ran out of the hospital to the car with a "Get me the hell out of here!" Right after that, I went home and collapsed from emotional exhaustion.

Sweet Freedom
My last appointment with my oncologist was the news that anyone in my position wants to hear. "We got it all! You are cancer-free." And then I was told that because the lymph biopsy was clear, they felt confident that my 'cancer-free' date was May 2009.

During all this, I had tremendous support from my family and my co-workers and a magnificent group of girlfriends. The "Wine Club" girls were my lifeline and they kept me laughing, even during the tough surgical recovery times. My partner at the time was also one of my biggest supporters right up there with my mom.

My Advice
My advice to all women is to be diligent in your own health. Get to know your own body, as early detection is key to your health. The earlier you find anything the better your chances are of a full recovery. And if you do find something, do not procrastinate. Get your butt into your doctor and get it taken care of. Fear could kill you!

I was also loaned a book from the wife of the pastor of my church, Denise Elliott and she herself is a breast cancer survivor. In this book was a single sentence that changed how I was to view myself and my new body image.

"I love my scars. They saved my life."

I do not view them as disfigurement. They are my badge of honour/survival. Without them, I very well might be dead.

Survivor
In honour of my own journey, I had a tattoo done for myself that is of a wonderful childhood memory: a monarch butterfly. In place of a regular black body is a pink ribbon. On my five-year anniversary of being cancer-free, I am going to have the word "survivor" written alongside my butterfly.

Be sure to check out Part 1 of Pam's story if you missed it. Thanks again for donations to this worthy cause.

Someone to Walk For - Part 1

I am honored to be walking for my cousin Pam (the lady to the left) in the Weekend to End Women's Cancers. She was treated for breast cancer at age 43. Today, she is doing well.

I asked her if she would mind sharing her story. I anticipated doing this in typical journalistic style. But she wrote it so well, that I'm going to simply post Pam's story in her words.

Here is Part 1 of Pam's story.

Due Diligence

First I have to go back to a little earlier in my life to have anyone reading this understand why it is so important to be diligent in one's own health. Over 20 years ago I switched family doctors and my new doc took into consideration the fact that I was an adoptee, in making recommendations to me with regards to what I needed to do yearly. One of her recommendations was that I have a complete physical at the very least, every other year. I did one better by having it done yearly, and I did so from the age of about 23, up to and including now.

During one of my first physicals, I had my doctor show me how to properly do a self breast exam, and I've been doing them ever since every month. So when I did finally find something, I knew with absolute certainty that it had NOT been there the month before or was too small for me to detect at that time.

In January of 2009 at the age of 43, my life changed forever. During one of my, by now routine, self exams, I found what no woman ever wants to find. A LUMP. That word took on a life of its own. The very next day I called my doctor and was told that I could not get in that day but the next day they had an opening. That was not going to do me any good as I was leaving that day for my vacation in Cuba for a week. So, I booked an appointment for the day after I returned. Cuba was wonderful but I constantly had my future playing in the back of my mind.

The Diagnosis
Upon my return, I went to my appointment the next day, and I got to hear the words, "this warrants further investigation" and see a look of concern on my doctor's face. Sitting there in my gown on the table in the examining room, I could feel my brain goes into self-talk mode with the mantra, "Don’t panic, don't panic, and don’t panic!!! BREATHE dammit!!!!!!!!!!"

So, I calmly got dressed, made my way out to the reception desk, was told that they would call me when my referral appointments were booked, said thank you and left.

I got in my car and proceeded to drive home and on the way, in my medical information haze, I drove through a red light with a police cruiser RIGHT BEHIND ME!!! About two whole blocks later I finally saw the flashing lights in my rearview mirror and realized they were not chasing some deviant criminal. They were chasing me! The officer came to the window and I still had no idea why I was pulled over. I'm not sure why but the officer gave me a stern warning that I needed to concentrate on the road and let me go at that. I took his advice long enough to get home in one piece.

I walked around in a daze for the rest of the weekend, and by Saturday evening, I had my first of many short-lived private pity parties. The pity party would start with just that....self pity (the why me's), which would set off a whole series of emotions, tears included, that always ended with the self talk inside my head, yelling to just knock it off, do what you have to do and get over this.

One thing I do know, is that anyone that has been told they may have or do have cancer, all of us have had that fleeting moment where one has to entertain the thought of dying. I know I did and I hate to admit this, but it was NOT a fleeting moment. I even went so far as to make sure I had a will which until all this happened, was always one of those things I would get done, someday.

Part 2 of Pam's story will be published next week. In the meantime, any donations to the Weekend to End Women's Cancers are greatly appreciated.

Tell Cancer to Take a Hike

I'm sick of losing people to cancer. This past year, cancer has been a particularly giant asshole. Three friends lost significant women in their lives to cancer. They were moms, grandmas, good people.

We lost a dear family friend, Joyce Schwartz, to breast cancer which had metastasized to her brain. The sad irony is she was a pillar of strength when my mother-in-law, Sue Smeltzer, died after a brief but brutal battle with lung cancer. At the time, she lived next door to my father-in-law and checked in on him often to make sure he was doing okay.

A couple years after Sue died, my husband and I moved to the West Coast. We kept in touch, sent Christmas cards along with photos my husband had taken, usually a scenic shot of Vancouver. Joyce had once lived out here and was happy that we had decided to try our hand at life out here.

As it often goes when you move far away from friends, we didn't talk to her nearly enough. Last summer I went home for a visit with our son. My father-in-law picked up his grandson and took his home in the Ottawa Valley for the day. He told me he'd taken him to see Joyce as he thought it would cheer her up. It was only then that I learned that her cancer had come back. She died last winter.

So in August, I'll be taking part in the 60 km, two-day Weekend to End Women's Cancers walk with my friend Chrissy as part of her team, The Juggernauts, to do our part to give cancer the old heave ho. Join us and tell cancer to take a hike. Make a donation, join us for a walk ('cause yeah, I really have to start training) or come and cheer us on. Any support you can give us is greatly appreciated.

Spreading the word on mental illness

Something I love about writing is the opportunity it gives me to learn more about things I feel strongly about and raise awareness of them. It's something I particularly enjoyed as a freelancer. Working in communications, these types of opportunities don't always present themselves in traditional ways, but they still happen now and then.

Before I left Douglas College, I volunteered to be an extra playing a patient in the Women's Chronic Unit at Riverview Hospital circa 1940-something for a reenactment scene being shot for a documentary called Bedlam. Above is a shot of me on set, shot by Mikki Herbold.

The film is a project by Heidi Currie, a criminology prof I met while working at Douglas, and filmmaker Lisa G (Lisa's the one with the camera). It's a continuation of their project Asylum. Heidi teaches a course on working with offenders with mental disorders.

I knew about Asylum as it had been part of a larger series of events at the college I had publicized last spring. Last fall, I posted a story on the employee blog that Heidi needed extras for her new project and figured, "Why not?"

The new documentary focuses on Kay, who took a job at Riverview during WWII at age 16 – she tells the story of her first day at work as Bedlam’s narrator.

The treatment of people with mental illness has improved markedly since then, when the patients at the Women's Chronic Unit were unmedicated and wards were understaffed. We wore drab tunics and grey wool socks and were essentially stripped of any identity we had outside of our characters' respective illnesses.

At one point, a nurse on set who had worked at Riverview years ago said we looked the part but were much too quiet. For a relatively short period of time, we were told to pump up the volume. For me, playing a depressive, this meant sobbing. Hard. I only had to do it for 10 minutes or so. I experienced postpartum depression a few years back and I simply thought of how alone I felt in order to pull what I needed to from my guts and do a good job. It made me sad to think that if I had been born in the wrong era, I could have been in a ward at Riverview, rather than feeling a heck of a lot better within a few months with the right medication and counselling. And it made me angry.

Provincial dollars for healthcare, including support and services for people with mental illness, have been decimated in BC. Well, redirected, says Heidi - there is limited access to mental health services until someone with ends up in the prison system. Then the province deems it important. Talk about too little, too late. Heidi also told me that there is very little documented history of Riverview so Bedlam will be an important educational piece on BC's mental health system.

Sadly, underfunding and poor access to mental health services isn't limited to BC or adults. Through a remarkable Twitter campaign sparked by TheNextMartha, I discovered No Points for Style, a blog by Adrienne Jones, whose son has bipolar disorder. Her story gave me the much-needed kick in the ass to put this entry together as the film shoot was in January. Not helping kids is just plain wrong and makes me much angrier than I think I can possibly express.

My thinking is the more people understand the history, they more they will see the danger in backtracking to having little government support for people with mental illness. I know it's a cliche, but hey, knowledge is power. And if I can play a small part in getting that knowledge out there by spending a Saturday playing a Riverview patient from back in the day, I'll gladly do it.