New Breast Cancer Treatment

Here is a two and half minute video on a new innovative breast cancer treatment … partial breast irradiation.

Daily Brivanib Side Effects

After being on a few different chemo regimens, I’ve learned the best thing to do when starting a new one is to keep a daily diary of the side effects. It just makes them easier to manage and to reconcile them when and if they are better or worse in my mind. Also, when the nurse asks me how the last week was I can give her a detailed list of what went on. She really likes my list.

These are a few side effects I experienced daily …

• woozy and drunk like till noon and then tapers off to nothing around 5 pm
• chills and nausea … mild
• fatigue
• blood stained mucus … minimal
• a rash just above my PICC line … minor

When I signed up for this clinical trial, the Onc warned me that my bp will probably go up. And mine is now 170/103.

Anyways, he put me on 5mg of Ran-Ramipril and said we’ll watch these numbers closely and adjust as required.

Results after One Week on Brivanib

After having my blood drawn and PICC line redressed at the clinic, I spent some time catching up on emails and surfing. I was feeling a bit down going into this appointment because of my dark urine earlier this week and I was not expecting good news. Anyways, the nurse and I went over the side effects I documented this past week. She then brought out the blood work and said with a smile, your liver numbers have gone way down. Really? Yes, my overall liver function has improved by 20%.

Then my Onc came in to the room and joined in. We all sat there with a look of surprise and then I saw a small smile come across on my Onc’s face … that said it all for me.

I can honestly say we all were very surprised by these results, especially after having dark urine this week. But for whatever reason, my body is very receptive to this new chemo. I’m overjoyed.

And then when I got home more good news … D said a lady from the Credit Union came by and dropped off these flowers and some chocolate. Apparently, she said they read my blog and just wanted to give me some flowers. There was no card and so I don’t know who this is from. However, I want to thank you so much because it just made a wonderful day that so much more wonderful.

Sears Coffee Group Meeting

Our Sears Coffee ladies group decided to visit one of our own who is in hospice. J’s daughter T greeted us at the entrance to J’s room. We all walked in and started chattering just like a bunch of school girls. First thing was for everyone to find a seat … of course that included our mascot Ari. He found a spot on the bed amongst J’s assortment of soft and cuddly stuffed bears. Unfortunately he kept falling over … giggling that he was being too rambunctious, we had him sit on S’s lap so he’d behave.

Then we checked in with J to see how she was feeling. She has had a drain put in from her liver so she is not looking jaundiced any more. She said today was a good day and had quite a busy schedule this week… visitors and such. She said she was happy because everything she needs is taken care of. Then we checked out all her doodads on her shelves and that were pinned to a cork board. We admired some newly added photos, we checked out some of her lovely flowers on the shelf and talked about the nice view she had out her bedside window. J said she enjoyed the little things like the pigeons that circled around the building for her.

We chatted about what’s new with all of us. I talked about how my chemo made me feel drunk like and of course we got a few jokes and chuckles out of that. J presented each gal with a book mark with inspirational message. Each one specially chosen for each of us… mine said … ‘May God give you a rainbow for every storm’. J I will cherish that, thank you.

Then it was time for photos … C said she didn’t want to be in the front. Once again we had some laughs … trying to rearrange five ladies around a bed … to fit into a picture.

As we were about to leave C decided to share a joke that had been sent around on email. She did a great job telling it and we all laughed pretty hard. 

Soon it was time to leave, each gal giving J a kiss and a hug and a few private words.

Healthy Weight Management for Breast Cancer Survivors

Healthy Weight Management for Breast Cancer Survivors


Guest blog post by Jean Harvey-Berino, PhD, RD



I know breast cancer first-hand, because I am a survivor myself. I’m also a medical researcher and professor dedicated to teaching people how to live healthier lives, one habit at a time.



When I look at the statistics about cancer and obesity, I’m astounded:



• Obesity is credited with contributing to 41,000 new cases of all types of cancer.

• Nearly 30 percent of postmenopausal and recurrent breast cancers can be linked to excess weight.

• About 90,000 cancer deaths per year in the U.S. could be prevented with weight control.

(Source: National Cancer Institute)



To change these numbers, I’ve joined forces with fellow researchers Kim Dittus, MD, PhD, and Jan Bunn, PhD, at the University of Vermont College of Medicine and Fletcher Allen Health Care, Inc., to conduct a pilot research study designed to test the effectiveness of weight loss programs among breast cancer survivors.



We will use the Vtrim Online Behavioral Weight Management Program as the intervention, a program I developed during 19 years of obesity research. Vtrim teaches people how to manage their weight by changing their eating and exercise behaviors. Changing behavior is truly the key to managing your weight. It’s when we change our behaviors, instead of depriving ourselves of certain foods, that we engage in a lifestyle makeover.



There are strategies you can put into action now to make your weight management goals doable. Here are five to get you started:



Bite It, Write It. The cornerstone of behavior modification is self-monitoring—a clinical term that simply means writing down the foods you eat, how much you exercise you, and noting triggers. To journal effectively be sure to record what you eat and drink immediately – you’ll avoid the forgot-it factor. Research shows that people who record their food intake lose twice as much weight as those who don’t write down what they eat.



Reduce TV Time. Researchers at the University of Vermont found that watching less TV results in subtle but meaningful changes in overall activity levels (see The Archives of Internal Medicine.) They found that individuals who cut television viewing by 2.5 hours (based on the average of 5 hours per day) burned off an additional 120 calories a day – the equivalent of walking about 8 miles a week.



Control Your Portions. Learn to eyeball portion sizes for when you can’t pull out the measuring cups (like when you are eating out or at a friend’s house). Use helpful visuals such as 3 ounces of meat/poultry is the size of a deck of cards, ½ cup of rice or pasta is about the size of a baseball, and ¼ cup is about the size of a golf ball. Research shows that people will automatically eat more when served bigger portions, regardless of physical hunger.

Make Your Exercise Count. If you're having a hard time sticking to your workouts, perhaps you need to add some Factor P (P, for "purpose") in your fitness plan. Research out of the University of Wisconsin-Madison shows that people who perform physical activity to complete a necessary goal (dare we say chore?) are more consistent and stick with it longer than people who plan their activity around gym workouts. So rake the leaves! Walk the dog!



Sneak In Exercise. Three ten-minute walks are just as effective as one thirty-minute walk. One study found that people who took more short exercise bouts actually lost more weight. Create a new routine: instead of meeting a friend for drinks or coffee, ask her to join you for a weekly catch-up walk so you can burn calories over conversation.



Jean Harvey-Berino, PhD, RD, is a Professor and Chair of the Department of Nutrition and Food Sciences and Professor in the Department of Medicine at the University of Vermont. Her research focuses on behavioral treatments for obesity in adults and obesity prevention in children. As the lead researcher and founder of Vtrim, a behavioral weight loss program, Dr. Harvey-Berino has conducted numerous clinical trials in obesity treatment over the past 19 years. Her current research projects include an examination of how weight gain is linked to recurrence of breast cancer. Jean is a recipient of the 2008 James Beard Award for "The Eating Well Diet" book.

Feeling Better after a Rough Patch

My coughing from allergies is way better and I’m crediting that to our first snow fall.

As this past Monday wore on, I thought … is my urine getting darker? Sure enough, Tuesday morning, my first pee of the day shocked me. It’s was a dark brown color. I contacted the research nurse and she asked if I was turning yellow … jaundice. I said no. Great she said, we’ll do blood work on Thursday when we see you. She reminded me to drink 6 to 8 glasses of water every day. And sure enough, after drinking a whole bunch of water … my urine is now clear again.

Apparently my billirubin levels were sky high to begin with and that combined with the Brivanib I just started; my liver just isn’t able to properly remove the bilirubin from my body. It then exits through the kidneys and into the urine turning it dark brown.

Mammogram by Lady Ta Ta ~ Video

I wanted to share a fun video that I first saw on my friend Dee's mets blog … Dee’s Updates.

The four and a half minute video is a parody of the Lady Gaga song "Poker Face" inspired by the folks at Susan G. Komen Foundation.

Update on how I’m Feeling

So I thought I better do an update on how I’m feeling outside the clinical trial side effects. For the last couple of weeks I’ve been struggling with what I think are environmental allergies. It started out with wheezing during the night which I’m treating with a nightly dose of Benadryl.

I don’t wheeze anymore but during the day, my chest feels so full. I cough and later have some shortness of breath. I find this especially when laying down or getting up from a laying down position. I’ve coughed so much I’m hoarse. My nose is a bit stuffy and my head feels a bit headachy.

I’ve also been experiencing the chills. This started a couple of days after getting my flu shot last week. I’m not too worried about this because my temperature remains normal.

Other than that … there is fatigue. I really have to plan and monitor my activity so I don’t over tire myself. If I do, I easily become emotional, anxious and nauseous.

Three days on Brivanib

So I’ve been on Brivanib for three days now and I thought I’d share what I’m experiencing. About 40 minutes after I take it, I feel woozy and drunk like, to the point that I should not drive. Even my laptop screen is blurry. About two hours later and after I’ve had bite to eat, the dizziness and lightheadedness pretty well disappears and I feel quite normal. 

I think I’m already getting a bit lazier because the couch is getting just a bit too comfy.

This change in my treatment is causing me to change up my blogging schedule a little. I used to like writing my blog every day with my morning coffee. But now I have to lay out some thoughts the night before when I’m thinking clearer and can string some thoughts together. I’ve also made a mental note not to schedule any morning appointments, for now anyways.

My Final Press Interview

Ok, this is the last newspaper article with me in it … this week I’m in the Edmonton Examiner. The story is still part of me helping the Canadian Breast Cancer Network with their campaign to promote Metastatic Breast Cancer Awareness Day. 

If you’re in the Edmonton area, I invite you to pick up a copy of this week’s paper or go here for the online version to read what I had to say. Working with the reporter from the Examiner was nothing but a pleasure. Not only did she help me get the message across accurately but she came by to take the lovely picture of me and my dog Daisy. 

I’m kinda glad this promotion stuff is all over now. I’m exhausted.

Eight Hours at the Clinic

I was pleasantly surprised when I got to my room on the ward and saw two beds … yes believe it, semi-private. My roommate was a lung cancer patient who was also there on a study drug. The nurse said, you will be here the longest … you get the bed closest to the window. Oh my, that was music to my ears. Being up so early in the morning, I was feeling wiped already so now the thought of crawling into a bed with a warm blanket was simply divine. 

Anyways, once we all got organized, the nurse took eight vials of blood through my PICC line. I was pretty excited about that because my hand was still badly bruised from my visit to the lab last Friday. She checked my bp and then gave me my first four tablets of the trial drug Brivanib Alaninate. I had blood drawn three more times throughout the day, along with having my bp checked. 

I was so comfy in bed that I skipped breakfast and just watched DVDs and checked email. As lunch approached, I decided it was time to get up and find some food. As I got up and walked down the hall to the cafeteria, I sure felt woozy, like I had a couple of drinks. 

At the end of the day, I was sent home with a log book and a three week supply of Brivanib. They want me to take it once a day, everyday at exactly the same time. I’ve settled on 8:30 in the morning and they can be taken with or without food. Because of the clinical trial the nurse warned me about taking any other drugs and to consult her first. She suggested if I do need to see a doctor, that I bring my clinical trial consent form with me.

Finally ... I’m on the Clinical Trial

Yippee yahoo … I’m on Brivanib Alaninate!

Yesterday at the clinic, the nurse came checked my blood pressure. After that the Onc came in and gave me a physical exam and discussed my health in general. I said other than being a little tired, I was feeling pretty good. He looked at all my test results. Everything looked good except some of my liver numbers were high … sky high. He said I made it in … just under the maximum … with only a few points to spare.

Long story short, the nurse asked when I’d like to start and I said … ASAP. Excellent, we’ll see you tomorrow morning at 8:00am … bring breakfast and lunch. Your appointment will last eight hours and blood will be drawn every two hours. Here’s hoping my PICC line can be used for that.

A WomansDay.com Article

About a week ago I received an email from a writer from WomansDay.com. She said she was working on a story for WomansDay.com about breast cancer bloggers and she wanted to include me in the article.

She said she wanted me to write something about my experience with breast cancer. Also to say something about the impact I’ve had on other breast cancer patients and the cause in general. She said she wanted my personality to shine through and to give their readers an honest view of what I’m currently going through and what I have already gone through.

I feel so honored to have been offered the opportunity to share my story on such a large stage. To see the article ... click here.

A wellthen.org user shared "Even healthy people get cancer"

Below is the link to Harvard Pilgrim Health Care's Well, Then site which shares information with the public about many different health issues. I was asked to write and do short videos on living with cancer. Harvard Pilgrim supplied me with a Flip Video for this project.
The main goal of the Well, Then program is to encourage folks to talk about what they do to be as well as they can be and learn from the experiences of others so they can apply it to their own lives.

Please pass this on to all the women you know.



A wellthen.org user shared "Even healthy people get cancer"

The Flu Shot

Yesterday D and I drove to the local mall to get our flu shot and get a bite to eat at the food court. We were the only ones standing in line. We started talking to the gal who was directing folks to each of the nursing stations for their shots. After a bit of small talk she said she was a trained psychologist and was also on the lookout for people with high anxiety.

She directed us to a nursing station were D and I sat together. The RN said we’d get a vaccine for three types of flu including H1N1. I said that I’d like to get my shot in my thigh because I have lymphedema in one arm and a PICC in the other. So the RN ushered me to the back where they had a screen setup.

After my shot we went back to meet D who’s biggest concern at that point is if he could get a sucker in case he started to cry. The nurse and I only chuckled a little bit. She said we don’t have suckers this year … only stickers. Just then we saw a mother and a two year old in tow who just got his shot. He was smiling and waving to everyone as he passed by. What a little trouper.

After the mandatory 15 minute wait for a negative reaction, we headed over to the food court were we felt like having Chinese.

This morning, my thigh was only mildly sore where I got the shot … if this is all it is … I’m ok.

Photos of my day on Parliament Hill

Hey everybody - I finally got around to doing a blog showing off the press photos taken on Parliament Hill with the Canadian Breast Cancer Network gals and me meeting our parliamentarians.

Because of the CBCN, the folks on the Hill have a better appreciation of what all us METs gals are going through.

This was a once in a life time experience and it was so cool because they were really listening to what we had to say. I’m so proud. 

Here is a shot of me in conversation with Senator Vivienne Poy. To see all 19 pictures, click here.

Vote For Health ~ An Initiative of the Canadian Cancer Society, Alberta/NWT Division

As per the Canadian Cancer Society’s website …

On Monday, October 18, Albertans will head to the polls to elect new city and town council members. The Canadian Cancer Society urges you, the voters, to consider health when casting your vote on election day.

The Canadian Cancer Society acknowledges the important role governments play in the prevention of disease. As such, we have educated candidates in municipalities throughout the province on important issues of health and surveyed them for their stance on each. The goal is to identify candidates that support healthy public policies and thereby empower you to Vote For Health in your communities.

To learn more about election issues and to find your community for a list of candidates in your area, please go to http://voteforhealth.ca/index.html.

A Full Day at the Clinic

It was seven hours at the clinic yesterday starting at 9:00. First off I saw the research nurse to sign the trial chemo consent form. We chatted for a while and then she gave me a requisition for blood work and heart tests. Come and talk to me when you have a break between appointments she said. Next I went for my CT scan. First thing, change into a gown, get an IV in and have a two liter contrast cocktail. 45 minutes later, I was laying down getting scanned. 20 minutes later I was back to my street clothes.

Next it was off to get my blood work done. They also needed a urine sample and did my Electrocardiogram (ECG/EKG). Now I had some time. I went back and found the research nurse. We found an empty room where she reviewed my test results and asked me some health questions including how I’ve been feeling, what medication I’m on, including vitamins and such. She took my blood pressure and asked if I had any questions. I asked if I should get a flu shot … she checked my white blood cell count and gave me the thumbs up.

After that I slipped over to the cafeteria and a bit of lunch. This was the first time I ate today because I had to fast for the CT scan. I had some time and decided to go to my Echocardiogram appointment early. I felt I had been waiting too long and was wondering why I wasn’t being called when all of a sudden it hit me; I should be in X-ray instead Nuclear Medicine. 

Fly over to X-ray … to … we were looking for you. Argg! I changed back into a gown and had my Echocardiogram. So now I am running behind schedule. Change back into my street clothes and run back over to Nuclear Medicine for my radioisotope bone scan injection. Fortunately, they used the IV line inserted earlier for the other yummy imaging stuff. She asked did you want to wait here for the stuff to circulate or leave and come back? I said I need to go over to Daycare and have my PICC line redressed. Then it was 45 minutes on the table for the bone scan. 

It’s now kissing four o’clock …. and I’m thinking that I definitely need a couple of aspirin when I get home. I’ll get all the test results this coming Wednesday.

Shout Out ~ Body, Mind, Spirit 2010: BC Conference

It’s a national conference for young women living with breast cancer on October 29 - 31, 2010 in Toronto.

The Canadian Breast Cancer Network and co-presenter Canadian Breast Cancer Foundation will bring together 400 young women with breast cancer to educate and inspire them in all aspects of their cancer journey. Participants can network with others who understand their situation, learn about the latest research from some of Canada’s leading medical professionals, and participate in themed workshops.

This year’s conference includes two gala dinners: “Rock Your Cancer” with Canadian rocker and breast cancer survivor Bif Naked, who will share experiences from her two-year battle with breast cancer; and “Breast Fest” where Rethink Breast Cancer will roll out the pink carpet to premiere the film “Jonna’s Body, Please Hold”. 

Other activities include author book signings, writing and creative arts sessions, a breast cancer art show, and an exhibitor showcase that will feature fashions, breast cancer resources and information from community support groups.

A special three-part series on BRCA will cover management options, fertility and psychosocial issues. More than 35 workshop topics include: “The Many Faces of Breast Cancer: Personalized Medicine”; “Taking Charge of Your Treatment for Women With Metastatic Breast Cancer”; “Breast Reconstruction: Knowing Your Options”; “Intimacy and Sexuality” (for couples and single ladies); “Babies After Breast Cancer”, and “Financial Health For Women on Long-Term Disability”. Plenary sessions will cover the topics of Healthy Living, Hope and Empowerment.

For conference schedule and online registration go to www.cbcn.ca. Note: there will be no onsite registration.

For more information contact: Jenn McNeil, Canadian Breast Cancer Network: 1-800-685-8820 ext. 224, or jmcneil@cbcn.ca.

Newspaper Interview and New Oncology Survey

When I agreed to help the Canadian Breast Cancer Network with their campaign to promote Metastatic Breast Cancer Awareness Day, I also agreed to do any local requests for media interviews.

Yesterday I did my first phone interview with the Edmonton Sun. If you are from the Edmonton area I invite you to pick up a copy of today’s newspaper or here is the online version. Unfortunately there are a couple of misquotes but I hope I was able to get the main message across.

Secondly, I wanted to share some information with you. The Canadian Breast Cancer Network put out an online survey directed at medical oncologists across Canada. The survey was about the importance of progression-free survival and the government funding process for late stage cancer treatment. I've added  a couple of links below so you can read more about it.

For the news release … click here.

For the results of the study … click here

.

Metastatic Breast Cancer Awareness Day

Today, October 13 is Metastatic Breast Cancer Awareness Day. The whole point of designating a day to this is to bring more attention to the needs of those living with advanced breast cancer.

We need more support and information ... especially for those newly diagnosed who often feel isolated and alone. We need more information for all of us with MBC so that we can make the best treatment decisions for ourselves. And most importantly, we need more treatment options so we can live longer.

Here is a four minute video titled Faces of Metastatic Breast Cancer ...

Not So Tired Anymore

I’ve been recovering nicely from last week’s trip to Ottawa; I’m not so tired anymore. Yesterday was the first day I didn’t have an afternoon nap. Tho I have been working hard on trying to make sure I get a solid night’s sleep. One of the tricks I use to help ensure I sleep well through the night is a pair of ear plugs. They take a bit of getting used to but boy-o-boy do they work. For me they muffle out the sounds that tend to wake me up.

Also, I’m still taking one Benadyl at bedtime so I don’t wheeze and cough when I lay down to sleep. It helps me breathe easier and therefore I sleep more solidly. 

I think I still need a bit more R & R so I’m going to stay close to home for the remainder of the week. I have a big day at the cancer clinic on Friday … appointments scheduled from nine in the morning till three in the afternoon. All these tests are in anticipation of starting my new study drug.

Hobart, how I love thee...

So...yeah I've officially fallen head over heels for Hobart. It was like someone blended the best bits of Germany, England and Australia and crammed them onto an island with every possible eco-system. Incredible.

On the first day, we flew in over the countryside with the most fantastic view. It's all coves and bays and rolling hills. After checking into our hotel, my brother, photographer Torsten Baumann (of www.b551.com fame) and I did a walk around the centre of the city. I was struck by the architecture ...and the bitterly cold wind! But mostly the architecture, which wasn't difficult to spot as we had to stop every 5 minutes to take photos.

Brisbane has always had a habit of destroying things with a bit of history. Anything interesting and beautiful is torn down to make way for a few more yuppie shops and apartments. Or historical buildings are left to decay until they are no longer salvageable. The people of Bris rally against this kind of insensitivity to historical beauty but it is often to no avail.

So, to walk about a town where the architecture is so eclectic is incredible. Old stone, London style terraced, mock Tudor, cottage, mixed with 60s and modern buildings. But all different. The fact that the city is built on a big slope adds to the visual charm.

Friday night was dinner with the girls at Rain Check Lounge. The girls, and by that I mean the beautiful and talented ladies of Miss Kitty's Meow (headed up by Grace Cherry) made me feel right at home. The restaurant, by the way, was a great Tapas place. Mixed crowd, very relaxed, professional service, interesting (in a good way) decor and fantastic food.

Anyway, aside from the giggling at blown up classified ads of the 'Busty Blonde. Very Friendly' sort that decorated the restaurant walls the girls got me up to speed with a little shop talk about the impending show. When we finally faced the icy cold wind to head off to bed and I felt completely assured that it was going to run brilliantly.

I also learnt (with some jealousy) that Tigerlily's boyfriend is a chef. The girl has the down-low on every eating spot worth visiting! Plus, Torsten found a place called Pretzel World when he popped out for a fag, which pretty much sealed the deal on my opinion of Hobart.

So, we bundled into Tigerlily's car for the trip to Franklin. Thankfully, Grace Cherry had taken my costumes and props the night before so I only had a pile of make-up and hair bits and bobs to cram in the boot.

This trip was to be our only opportunity to see some of the Tasmanian countryside and the trip to Franklin was absolutely beautiful. When we arrived at the Palais Theatre there was a mist rolling in from the hills our enormous dressing room overlooked the River. One other highlight was finding out that Chicken Feed is the place to get glue on crystals and Lady GaGa Cds. Thanks girls!

The usual preparations ensued, hair dramas, eyelash fixing, make up applying, etc, etc. Meeting all the other performers was wonderful and it was a real variety show. We had a magician, Bob Buchanan for an MC, Lucy Sky Diamond on aerials, Sarah Muir on pole, tango dancers, cabaret performer, all the girls of Miss Kitty's Meow including Tigerlily and Grace Cherry plus Scarlett Jezabel and the bestest stage manager this side of the equator!

Considering the stage was slightly raked, I was concerned as when I did a sound check and run through earlier in the night, it was tilted enough to put me off balance. That, and my dress fell off. Which I appreciate is the point of the act but only when I've carefully timed it. So I was a little nervous going out for my first act. I needn't have worried. The show went perfectly. And I mean perfectly, which never happens! Usually you come off stage thinking, 'I could have done that move better,' or something of the sort but I was so happy with both acts and was on a complete high when I dashed into the wings to put my dressing gown on (a very pretty one mind you!) for final bows.

I was also lucky enough to be waiting in the wings for my final act when I was able to watch Scarlett and Grace do their duet fan dance. Fan-bloody-tastic. I know, groan, pardon the pun, but it was. The colour, the grace, the cheekiness. I just loved it.

Other highlights for me were Tigerlily's bubble act which was absolutely adorable with an excellent use of props and Lucy Sky Diamond with her trapeze act. She has inspired me to finally commit to creating a trapeze performance of my own, what a girl!

Torsten of course, was snapping away. I've also popped a couple of pics up on my Facebook fan page and others are visible at his blog, including a few lovely architectural shots of the theatre.

So feeling somewhat elated we all bundled back into Tigerlily's car for the scary ride home. That beautiful mist from earlier had turned into a fog so thick we had to crawl at 40km the whole way home. Some crazy cab driver shot past us like a bat out of hell while we were on one of the most impossibly thick spots where we couldn't even see where the sides of the road or lanes were. I don't know if he had x-ray vision or something.

Later, we found out that Grace Cherry's cab driver was also driving like a maniac all the way back to Hobart. Seriously people, if you are paying for it, you have a right to tell them to slow down. Not a fun way to end a night thinking you might die at the hands of a kamikaze driver.

Anyway, a brief mar on an otherwise perfect evening.

I absolutely collapsed into bed with an enormous sense of well being and looking forward very much to a sleep in!

Talking Metastatic Breast Cancer

Here is a two and half minute video where Lori Baur shares her journey with metastatic breast cancer.

So Exhausted from the Ottawa Trip

Pooped, tired, worn-out, drained, beat, bushed, dog-tired, fatigued … I think that pretty well describes how I’ve been feeling these past few days. My Ottawa trip plain old wore me out. I thought I’d be able to handle all I had to do over there a bit better but apparently not. For now, my days of gallivanting across the country are over.

I was so tired these past few days that I felt nauseous and head achy. Emotionally … I could cry at the drop of a hat. I was plain old beside myself. I even started checking my temperature thinking something might be wrong.

Today I’m feeling quite a bit better. Even my sleep schedule is back on track. I’ve been having afternoon naps to top things up. I actually pulled out my trusty Benadryl before bed the last couple of nights because I’m coughing and wheezing when I lay down to sleep. I think some of my fatigue is partly my system fighting off the fall allergies.

Long story short, I’m no longer feeling like such a schmata.

The Proclamation Ceremony at City Hall

Wednesday was going to be another exciting day. We all met at City Hall to watch the proclamation ceremony ... to see Larry O’Brien, Mayor of Ottawa, proclaim October 13 as Metastatic Breast Cancer Awareness Day. 

As we were sitting around chatting and waiting for the meeting to start, the Mayor came around to chat and shake hands with some of the visitors. That was very cool because I was one of them.

So this is what was appeared in the City Council Updates for October 6th …

October 13 is Metastatic Breast Cancer Awareness Day

Mayor Larry O’Brien today declared October 13, 2010 as Metastatic Breast Cancer Awareness Day in the City of Ottawa. The Mayor presented Ms. Dianne Hartling, Treasurer of the Canadian Breast Cancer Network, with a framed proclamation.

In metastatic breast cancer, also known as advanced, secondary or Stage IV breast cancer, cancerous cells spread to areas of the body other than where the cancer first formed, often with increased severity. Breast cancer cells can spread to almost any part of the body but most commonly to the bones. Other common sites include the lungs, liver, brain and skin. The new cancer is called a metastasis.

The Canadian Breast Cancer Network, which advocates for the improvement of services and access to optimal care for breast cancer patients, is the national link between all groups and individuals concerned about breast cancer. It is the only national survivor-driven and survivor-focused breast cancer organization in Canada with more than 225 partner and member groups across the country.

Ms. Hartling, a longtime committed volunteer for breast cancer causes, is a breast cancer survivor.

My Day on Parliament Hill

Last Tuesday morning, just after 7, the cab dropped us off on the street. No commercial or private vehicles are allowed in front of the parliament grounds. As we walked up to the main building, I remember thinking this was an awesome site. It was so quiet and serene this early in the morning. Once we found the proper entrance, we got our security passes and found our room, 256-S Centre Block of Parliament Hill. Cool huh!

The rest of the day all happened pretty fast. I was being introduced to different people and I was doing my best to get as much information out about metastatic breast cancer as I could. The message was to raise awareness of metastatic breast cancer, to increase support and information and to have timely access to drugs to treatment. It was a lot of information to get across to each person in a very short amount of time.

Then we were called to sit down for VIP speeches and then for the remainder of our time, I was introduced to more parliamentarians and more sharing of my story. Before I knew it, it was all over … well not quite, we were given a complete tour of Parliament Hill. It was all very exciting. A photographer from the Canadian Breast Cancer Network took pictures of us on our tour. These pics will be posted on their website in a week or so. That is a good thing, because it all happened so fast, I can hardly remember the name of one person I met or one thing I saw.

At the end of it all, a cab took me back to my hotel room for a short rest and then it was a phone interview from a reporter from the Hill Times, a weekly news paper from Parliament Hill.

I was starting to feel the effects of the busy day and fatigue was setting in. I tried my best to get to bed early but all the excitement left me too pumped to sleep. Fortunately, the next day was a later start. More on that tomorrow.

Here a few pics taken with my smartphone ...

Trek for Treatment Eric Drew Foundation

Sunday October 3rd was the fourth annual Trek for Treatment. The Trek is put on by the Eric Drew Foundation which is dedicated to helping seriously ill patients and their families find clinical trials, teaches them to advocate for them selves and deal with the insurance maze, just to name a few of the areas that the Foundation is involved in. Please take a minute to read about Eric Drew's journey and the wonderful services the Foundation provides www.drewfoundation.org.
Confident Clothing was honored to have a booth at the Trek for Treatment information fair along with the March of Dimes and other organization that help people with a variety of medical conditions.

The CBCN Metastatic BC Awareness Day Kickoff in Ottawa

I landed in Ottawa Monday afternoon, which gave me a  good while to rest up before our supper meeting that night. There were about ten of us including staff and volunteers from the Canadian Breast Cancer Network. It was so nice to spend some time to get to know each other before our meetings with senators and members of parliament the next day. Alice, a 2-year metastatic bc survivor spent most of the day getting chemo and was not able meet with us.

The ladies from the Canadian Breast Cancer Network talked about the many things they do as a national bc organization. Not only do they promote education and awareness but they act as link between all groups and individuals concerned with bc. After supper, a couple of us shared our stories of METS survival. We talked about support at home, husbands and children and blogging, how we changed and how bc changed us. We also talked about the support we receive from friends and extended family. And of course we talked about our past … before bc, including remission and family and careers.

Along with telling our individual stories to parliamentarians and media the next day, we were given key points to help keep the CBCN message consistent. Very professional.

I wish we had more time to talk but I was getting tired and the next day was an early start; we had to be on Parliament Hill at 7:00.

Proclamation From City Hall

Today we were at City Hall for the proclamation of Metastatic Breast Cancer Awareness Day. I got an opportunity to meet Larry O'Brien, the mayor of Ottawa. It was another very exciting day ... heading home, later today.

... blogging from my smart phone.

A video from our friends....

Burlesque Against Breast Cancer friends, Jimmy Cairney of the Bobby McGees and Kate Kamikazie have gotten together and done this...

Breakfast on Parliament Hill

This morning we had our breakfast on Parliament Hill. It was an amazing experience. Afterwards we got a tour of the Parliament Building.

All this has left me quite tired ... so it's back in my room for a rest.

... blogging from my smart phone.

Media Alert ~ Metastatic Breast Cancer Awareness Event on Parliament Hill

Media Alert - Canada Requires a National Action Plan to Address the Information, Support and Treatment Needs of Women with Metastatic Breast Cancer

~ Ottawa Will Become First Canadian City to Proclaim Metastatic Breast Cancer Awareness Day ~ 

OTTAWA, Oct 1 CNW - To launch Breast Cancer Awareness Month, the Canadian Breast Cancer Network will be at Parliament Hill on October 5 to raise awareness of metastatic breast cancer and the unique needs of women with metastatic disease from those in the broader breast cancer community. Metastatic breast cancer, an advanced breast cancer that appears in other parts of the body, is developed by an estimated 30 per cent of women (globally) who are first diagnosed with earlier stages of breast cancer. 

To educate and advocate for specific needs such as psychological support and access to treatments, CBCN will host an event where Canadian women will share their personal and compelling stories with metastatic disease. The Network will also urge Parliament to recognize October 13, 2010 as the first national Metastatic Breast Cancer Awareness Day. Note: Ottawa will become the first city in Canada to proclaim October 13, 2010 as Metastatic Breast Cancer Awareness Day at an event on October 6, 2010. 

Media are invited to attend the Parliament Hill breakfast event, or to arrange interviews with the presenters. Additional metastatic breast cancer survivors are available for interviews in Burnaby, Edmonton, Bolton, Mississauga and Dartmouth. 

Speakers Include: 

• Cathy Ammendolea, President, Canadian Breast Cancer Network

• Carolyn Stewart Olsen, Senator

• Dianne Hartling, 7-year metastatic breast cancer survivor

• Alice McClymont, 2-year metastatic breast cancer survivor

• Daria Maluta, 2-year metastatic breast cancer survivor

When: Tuesday, October 5, 2010

7:45 am to 9:00 am 

Where: Room 256-S Centre Block (Parliament Hill) 

About Metastatic Breast Cancer and the CBCN 

• Metastatic breast cancer, stage IV, or advanced breast cancer, occurs when cancer cells travel from the original site of the cancer to other parts of the body. When breast cancer cells leave the breast, they often migrate to the bones, lungs, the liver, or to the brain;

• Women with metastatic breast cancer often report feelings of isolation from the broader breast cancer community, whose public focus and advocacy efforts are largely directed toward early stage disease;

• The Canadian Breast Cancer Network is the national survivor-driven and survivor-focused organization that exists to voice the views and opinions of breast cancer survivors and to promote the improvement of services as a strong advocate for access to optimal care for breast cancer patients. 

For further information:

Melissa Milk, Communications

Canadian Breast Cancer Network

(613) 230-3044 ext. 227

mmilks@cbcn.ca 

Wartless Once Again!

Last August 23rd I wrote about how I developed this wart on the top of my right foot. I had resigned myself to the fact that it would probably be with me for a very long time because any sort of treatment was out of the question while I was on chemo. Well believe it or not, yesterday I was idly picking at it and to my surprise this thing just fell off. Ok this is gross and probably too much information but I am so happy to be wartless. 

I’m not sure exactly what is going on because I have another spot. This time my thumb that is acting up. For the last month the top of my left thumb has been so itchy; especially first thing in the morning. I actually put a big ring on my thumb to prevent me from scratching it … I’m thinking that if I irritate this spot too much it will only make it worse.

Suddenly I Have Fewer Hat Days

Even tho I only have about a 3/4 of my hair, it still needs to be cut once in a while. So yesterday I went to the cancer clinic for a free trim. I asked the stylist for a special cut for a special day. I told her about my trip to Ottawa and she said, wow, why you don’t try one of our wigs? I proudly said … no thanks, I going as is... no wig.

I was planning on wearing a hat on my trip but that changed when Maria the clerk at Sears said, no, don’t wear a hat, you look fine without one. I remember just about crying thinking wow what a revelation … I don’t need to wear a hat? … I am lovin’ that idea.

My hair looks not too bad from the front and the sides but not the back. There is a thin spot caused by rubbing my head on the pillow. My hair is weak and thin and it breaks off easily.

I’m not ready to give up my hats completely but now I am way more likely to go without one.

Livestrong Day 10/2

Saturday October 2 is Livestrong Day … a day recognized around the world to bring awareness to the global cancer crisis. It marks the 14th anniversary of Lance Armstrong’s cancer diagnosis and the day he entered the cancer community.

Here is a three minute video about Livestrong Day.

Click here to check the world map on the Livestrong site and see what’s going on in your country and make a commitment to attend.