So Thankful for Help Shopping for My New Outfit

I have been a bit anxious about getting a new outfit for the Metastatic Breast Cancer Awareness Day in Ottawa. I had already been shopping a couple of times, looking at clothes but just didn’t have the energy to try anything on. So at our Sears coffee group yesterday, I was thrilled when Irm and S offered to help me pick something out.

We went into Sears and while we were grabbing at outfits, a clerk named Maria came by and said, no those colors won’t work for you … you need these colors that will pick up the color of your eyes. How wonderful … someone who really knows what they are doing. She then picked out a couple more outfits and together we went into the change room. 

I said thank you so much, I need help because I am undergoing breast cancer treatment and I have low energy. I anxiously told her I need a special outfit for a special event. She said no trouble at all, calm down and I will help you every step of the way. We will do this slow and easy.

Right off the top, I told her I’m not exactly an easy customer. My tops can’t be too low in the front because I have a breast prosthesis and a catheter scar and I want to make sure they’re well covered. Tops also need sleeves long enough to cover my PICC and wide enough fit over my lymphedema. And most importantly, I just want the whole thing to be comfortable to wear. 

Maria was amazing. I lost track but she brought in 20 or 25 pieces of clothing over ~two hours. She helped me put on and take off each and every item. As time was ticking by, I tried to rush things a little. She said slow down, I’m here to help … it’s my job. I think she ended up missing her break. She really did go ‘above and beyond’ to fit me. 

I have to thank Irm and S for being so patient with what looks good on me. I can hardly believe how blessed I am to have all this help.

I came out with an amazing outfit and can’t wait to show it off.

Flu Season Facts

I’ve come across a few people recently who have either had a cold or the flu. And my reaction is usually the same ... I try to put some distance between them and myself. I try to be on high alert on things that they’ve touched so I don’t touch them. I just don’t even want to consider being sick. 

So, as this flu season approaches, it’s time for some simple reminders on how to avoid getting sick. They are things we all should be doing all year long but have probably become lax on.

• Wash your hands, wash your hands, wash your hands ... or, if you can’t wash your hands, use an alcohol-based hand sanitizer.
• Refrain from touching your nose, mouth and eyes.
• Stay away from people who appear to be sick.
• If you are going to have visitors, don’t be afraid to ask them if they or any immediate family members are ill.
• Consider a flu vaccine.

And for friends and family of someone undergoing cancer treatment, please remember that people undergoing treatment are at a higher risk of infection because of their chemo weakened immune system. A simple flu to a healthy person can turn into pneumonia in a cancer patient. So be aware.

For more information on flu facts for cancer patients ... pls click here.

Presented with a Great Opportunity

I have been invited by the Canadian Breast Cancer Network to speak and to help promote Metastatic Breast Cancer Awareness Day on October 13. This day is recognized in Canada and in the United States. My name will be used in media alerts and press releases and they might quote me and use my photo. 

To help me out with all of this, the CBCN has sent a background information package about the CBCN to help prepare me for the press and TV interviews that I will be doing. 

Even tho I am thrilled with this opportunity to speak about my experience and get the message out about metastatic breast cancer; I’m just a bit nervous about doing a good job. I wasn’t sure I had it in me, so I asked D … do you think I can do this? He said yes, without a doubt. 

To kick off the event, the CBCN is having a breakfast rally next week on Parliament Hill in Ottawa. My flight and room are already booked … only thing left to do is to buy a new outfit.

New Mammogram Technology

This is a 3 minute video on new 3D mammograms making it easier to spot tumors.

How Am I Doing?

I’d have to say I have no pain and feel pretty good but I am very nervous about what the next day might bring. A couple of my bc friends have turned jaundice recently, a sign that their livers are failing. So every morning I wake up and it’s a look in the mirror and in the toilet. Jaundiced skin and dark urine are the common signs with liver failure. 

Of course this has left me feeling agitated and very anxious. The silly part is that I’m too afraid to ask the Onc if I’m even close to needing to worry about the metastasis in my liver. 

My energy level is good but I as I tell everyone, I’m nowhere near the spunky person I once was. My appetite is very good. Regarding sleep, I nap just about every afternoon now but I’m also up a bit later in the evening. I’m thinking of trying to cut the afternoon nap out and go to bed earlier. 

So all in all I’d say my body is doing well but I need to calm my mind a bit.

More Clinical Trial Questions

Friday afternoon the research nurse called me at home and we chatted about last Monday’s appointment with my trials Onc. We went into great detail about my health history ... did I ever have any heart problems like heart attack, stroke, chest pain, blood clots, did I ever have high blood pressure, have trouble with bleeding ... anywhere. Have I had surgery lately, how was my energy level, what medications I’m on, namely did I take daily aspirin, blood pressure meds and a few more that I just don’t remember right now. Thankfully my answer was no to all questions.

Then we scheduled my physical examination at the clinic; it’s on October 15. It will be six hours long and will include a whole series of scans and tests. The nurse also said she’ll talk to the Onc about getting my PICC line removed. I said, maybe we should hold off on that ‘till I’m approved for the trial drug before we yank that thing out. Good idea she said.

To help keep me occupied that day, I’m gonna take my smart phone with me to surf the Net and maybe even post my first remote blog. I’ll see how it all goes.

Cancer Treatment Centers of America Webinar

I’ve been asked to share a bit of info with you ...

On Wednesday, September 29, at 6:00 PM EST, Cancer Treatments Centers of America are hosting a live webinar titled, Radiation Breakthrough: New Hope in Single Dose. It is about a new and innovative technology that helps cancer patients get well sooner and essentially get back to their lives more quickly. It’s called Intraoperative Radiation Therapy (IORT) using the Novac7 technology and it allows a single dose of radiation to be administered to a tumor bed during the time of surgery, often eliminating weeks of outpatient radiation treatments.

In this one-hour webinar, you will: : 

• Hear directly from the doctors who were the first in the United States to use this technology (Steven Standiford, MD, FACS, National Director of Surgical Oncology at CTCA; and Pablo Lavagnini, MD, Director of Radiation Oncology at CTCA) ** At the end of the webinar, Dr. Standiford and Dr. Lavagnini will be taking questions live
• Learn what IORT is and how it works
• Learn who is candidate for IORT
• Hear how IORT benefits patients from both clinical and quality of life perspectives 

To register for the event please visit www.cancercenter.com/webinar. Registration will be open until one hour prior to the event.

Be More Positive … Arggg!

Yesterday I visited my Chiro to have my tight calves stretched and massaged. After some small talk he said, I sure can see that you are being more positive … referring to my attitude dealing with cancer … I guess.

Of course the hair on the back of my neck stood up because I’ve heard more than enough times that I should try and be more positive … so just the sound of the word makes me defensive. Anyways, I said yes I probably am but that is likely because I haven’t had chemo in a couple of months and I’m feeling more like my old self. My energy is up, the world isn’t so foggy.

I need to rant … When you are on chemo; you’re way too tired to put on a smiley face for everyone. That doesn’t mean you are a negative person. It’s just means that putting on a false front for the world is not a priority. Most times, it’s that simple.

Canadian Cancer Society ~ Edmonton & Area Volunteer Opportunities

As per their website, the CCS is looking for volunteers …

Get involved! Volunteer with the Canadian Cancer Society and make a difference.

The ability to help is one of the most rewarding experiences in life. And one of the most effective ways of helping people fight cancer is by volunteering your time and talents. By choosing to join forces with us in this struggle, you can make a significant difference in your community.

Jail-N-Bail - October 20 and 21, 2010

Being on the wrong side of the law for the right cause is what it's all about during the Canadian Cancer Society Jail-N-Bail. It’s all in good fun and it’s for a great cause. To maintain law and order during Jail-N-Bail, the Canadian Cancer Society is looking for volunteers.

Volunteer drivers

As a volunteer driver you will pick patients up from their home and take them to the Cross Cancer Institute for treatment appointments.

CancerConnection - Peer support volunteers

CancerConnection is a telephone peer support program that matches cancer patients and caregivers with survivors and others who have had similar cancer journeys. Volunteers are required on an ongoing basis to provide emotional support to newly diagnosed cancer patients.

For more information about volunteering opportunities with us, please contact Hayley Orton, Volunteer Resources Coordinator at (780) 437-8418 or by e-mail at hayley.orton@cancer.ab.ca.

Another Onc Appointment

Yesterday I had an appointment with my new trials Onc. The app was very short. He asked me if I had read the consent form for the proposed study drug … I said yes. And then he asked if I had any questions. I said no and he said are you sure? … and I said yes.

That was pretty well it. He said the research nurse would get a hold of me to witness signing the consent forms. Ugg! even more waiting to get this show on the road.

These appointments cause so much stress and coming out of this one with so little just sucks .. ok, ok, I’m a little low on patience right now.

Shout Out To ~ Alberta Caregivers Association Convention

The convention is an opportunity for caregivers, and the individuals and agencies who work with caregivers, to contribute their experiences and expertise in the development of a provincial caregiver strategy.

As per their website …

We are an organization of caregivers for caregivers that helps them maintain their own well-being over the caregiving journey. We offer information, education, support, networking, advocacy, and community development to make caregivers' lives less difficult.

The ACGA will be holding a Caregivers Convention in Edmonton on October 22, 2010 and in Calgary on October 29, 2010. 

You should consider attending, if you:

• have experienced or witnessed the frustration, exhaustion, and rewards of providing care for a loved one
• have had difficulties finding or accessing services and supports for caregivers
• would like to see an Alberta where caregivers are recognized, valued and supported

For more information about the convention visit:

http://www.albertacaregivers.org/register_convention2010.html

Another Angel Is In Heaven

My friend Claudette, a fellow cancer fighter passed away late Friday evening.

I met Claudette about a year ago at a cancer support group. The class was about to begin when I said, I’m going to get a coffee before we get started and this lady jumped up and said I’m going to get one too. It didn’t take long before we got to know each other quit well. Claudette was a wonderful, outgoing lady in her early 60’s, who 6 months earlier been diagnosed with stage 4 bile duct cancer and that chemotherapy and radiation were not an option.

With our love of a good cup of coffee, it didn’t take long before we started meeting weekly at the local Second Cup. We felt really comfortable with each and chatted about everything … nothing was off limits.

Claudette was an amazing cook and one of the things she wanted to do before she died was to collect all her recipes and compile a recipe book that she could pass on to her children. I remember her bringing a laptop to coffee and we had a look at her first draft. She had about 150 recipes all grouped by category. She had gone to the internet and found pictures to go with each one. It was quite the accomplishment. She was so proud and when the final version came back from the printer, she was just beaming. 

As Claudette became weaker, I started visiting her at home. I fondly remember sitting with her in her beautiful back yard overlooking the ravine. It was always picture perfect with blooming flowers, birds flying in and out of the bird bath and the calming sounds of a water fountain. Her backyard was even featured in a popular magazine. 

These last four months have been difficult for Claudette; as her tumors grew, she had to go in for more and more procedures. Thankfully that is all over now and she will not suffer any more.

Rest in peace my coffee buddy.

Volunteer Appreciation Dinner and Awards

I'm a volunteer and last night D and I attended the Canadian Cancer Society volunteer appreciation dinner. The event honored nearly 200 volunteers from Edmonton and area. 

The event was held at the Old Timers Log Cabin which created a beautiful and natural atmosphere that made for a really nice evening. The program started off with a delicious buffet dinner which included my favorite Ukrainian dishes, perogies and cabbage rolls. They're oh so good. After a short welcome from Heather Halpenny, a board member and breast cancer survivor, we listened to Dr. Thomas Simmen, a researcher at the University of Alberta. He talked about how complex the battle against cancer really is. Having said that, we are making great progress with survival rates increasing each year.

The next part of the program was about honoring the volunteers. We all were recognized for the amount of time volunteered … everything from a few weeks to many years. People were given a certificate of appreciation or a beautiful framed picture. It was so very heartwarming to be in a room filled with so many kind and giving people.

At the end of the evening, we were shown a 12 minute video titled Christine’s Fight. It was so frank and moving that I’ve included it here.

Comedy Night for Cancer

Last night two friends B & D and my D & I went out to the 2nd annual Don Neil’s Comedy Night in Sherwood Park, just east of Edmonton. We got there in time to buy some raffle tickets and to have a look at some of the silent auction items available. They had about 30 really nice items available, everything from dinner for 12 at the Canadian Brew House to jewelry, to gift certificates. As we were walking around the foyer, we came across a black labrador retriever. We later found out it was a therapy dog called Lando along with his handler Carla Rugg, a music therapist. They team up to offer music therapy to cancer patients at the Norwood Palliative Care Center.

The MC for the evening was Don’s brother Graham Neil who started this event in memory of his brother Don who passed away from cancer last year. The evening began with a funny musical act called The Be Arthurs. Three guys dressed in bright zany outfits … and man could they play and sing. Then we were entertained by a whole slew of local volunteer comedians including Andrew Grose, Howie Miller, Atomic Improv, Sean Lecomber and Lars Calleou. Sure was entertaining to hear jokes about things going on around our city. 

The show was a good 3 hours long and I have to say, we enjoyed every minute of it.

Sleepy Fall Weather

Yesterday morning I had an appointment with my chiropractor and then in the afternoon I had coffee with the BC group. Generally I look forward to doing both but these days the only thing on my mind is … I want to nap.

When I was at the chiropractor’s getting my calves stretched and massaged, I tried to make small talk with the Doc but I eventually said to him, you know what, I could just fall asleep right here on this table. He laughed and said everyone is walking around the office yawning. He said it’s just that time of the year. Hey … it’s not just me.

I find the early darkness and cooler temperature of fall make for great sleeps at night. I just wish I wasn’t so sleepy during the day.

Cancer Video … Go Nads!

The Canadian Cancer Society asks men this question …

How well do you know your equipment?

Watch this three and half minute video on testicular cancer. Way too funny!

That Emotional Conversation with my Husband

I’m still shaken about the sudden death of my friend Christine. Here I am thinking cancer is eventually going to take my life when in fact it might be some unforeseen complication. So after doing some thinking, I felt a real sense of urgency to do something that I hadn’t done yet and that was to go over my wishes and finances with D.

Months ago, I compiled a folder of information containing my will, detailing my finances and my possessions. I just wanted to go over it with D so that he understood all the details. The problem was finding the right time to bring up these sensitive issues.

So yesterday during our morning coffee, I started out by saying I wanted to go over a few things with our financial advisor. Then I said, but first I want to discuss those items with you, D … and so began the difficult conversation.

It was a very emotional conversation and there were plenty of tears from both of us but I managed to go over everything that was on my mind. It was also a very draining experience but I felt a sense of relief now that that this is off my chest … Now, all the details of my affairs are in order and all my wishes are known to D.

Final Goodbye to My Friend Christine

I’m very sorry to say that last Friday, my breast cancer blogger friend Christine from The Edge of Light, passed away. I met Christine through the blogging community and I was thrilled to have found her not only because she was a mets gal like me but she was also a Canadian. Tho she lived in Ottawa and quite distance from Edmonton, we connected instantly. I found her to be a real inspiration, always leaving me so many kind and encouraging words. I loved her sense of humor too.

This past May I was fortunate enough to meet Christine in person in Philadelphia when we both attended a metastatic breast cancer conference. She looked wonderful and was as spirited in person as she was on her blog. Here is a picture I snapped of her at the conference … she was always smiling.

I feel very honoured to have known you Christine. Rest in peace my friend.

The Tomorrow Project

The Tomorrow Project Alberta is a large, long-term study that seeks to find the difference between people who never get cancer and those that do. Researchers here will follow the health of Albertans (ages 35 to 69) for the next 50 years to gather information on health and lifestyle through surveys and the collection of blood and other specimens.

This year in Alberta (pop.4 million) an estimated 6,200 people will die of cancer and 15,900 new cases will be diagnosed. While great advances have been made in the early detection and treatment of cancer, there is still much to be learned about what causes cancer and other predictive measures which could lead to new strategies for prevention, early diagnosis and treatment.

The Tomorrow Project in Alberta has two Study Centres, one in Calgary and one in Edmonton, with combined capacity to process over 350 participants per week. D has volunteered to sign up and I hope others here do too. For more information, please follow this link … http://www.in4tomorrow.ca.

Clinical Trial Onc Meeting

A few weeks ago my regular Onc said we’ve run out of conventional chemotherapy's for me. I pretty well knew I wasn’t done yet. I still feel pretty strong and want to keep up the fight as best I can. So I had asked him to look into clinical trials for me.

So yesterday I had my first appointment with my new clinical trials Onc. He seems like a nice guy and gave me a lot of information in a short amount of time. To help me out, he gave me a 20 page consent form that has most of everything I need to know. The name of the trial is... A Randomized Discontinuations Study of Brivanib alaninate (BMS-582664) versus Placebo in Subjects with Advance Tumours). Yuk huh! What it is … Brivanib is an oral chemotherapy and I’m to take one pill everyday while on the trial. A few of the many known possible side effects are high blood pressure, blood clots, nausea, diarrhea, headache, and fatigue.

The Onc asked me to take a week to think about it. If I choose to participate, I will then have a battery of tests to verify my eligibility for the trial. These tests include an echo-cardiogram, ECG and tons of blood work. I think he mentioned needing a tumor sample too. More yuk.

If everything tested comes back satisfactory, I will be accepted and begin the trial.

Big yayyy.

Telethon Tonite /w Katie Couric ~ Stand Up To Cancer

Just a reminder to tune in tonight, to watch the one-hour telethon, Stand Up To Cancer at 8pm ET/PT, 7pm CT on every major television network.

Here's the link to a 41 minute video in which Katie Couric talks with SU2C founding member Sherry Lansing, oncologist Dr. Charles Sawyers and survivor Ethan Zohn about the telethon, the work scientists have accomplished since 2008, and how we can help.

Tight Calves

For the last month or two, I’ve been less active which in turn makes all my muscles weaker and stiffer. I am most bothered by my calves. They are the tightest and cause me to waddle when I walk.

So yesterday I finally I decided to go see my Chiropractor so he could do some deep tissue massage on my calves. He only spent a few minutes on them but I gotta tell ya, I felt the looseness come in right away. This isn’t the first time I’ve struggled with tight calves so I’m thinking of trying a custom orthotic for my shoes. I’ve already tried the cheaper ones you buy at the drug store and they help, but I’m really thinking of something more solid.

I see the chiropractor next week and he is going to do a foot scan on me to see my feet in action. I think it’s a mat you walk on which then shows the correct shape of the custom orthotics for your feet.

Lunch with a Friend

Yesterday I had lunch with K, a friend I used to work with. I could hardly believe it’s already been six years since we worked together. My-o-my, time does fly by. As we sat there chatting and giggling about the old gang at work, I had this feeling … a feeling of wow, that this all seems like a lifetime ago. These past couple of years battling cancer has put way more distance between now and the past. It’s getting harder and harder to remember the good times. 

Our conversation then turned a little more personal when she spoke of both her and her husband B having a cancer scare. He developed a fast growing lump on his neck. When B was first examined, his GP thought it might be cancer. K said it was a very scary time during those few weeks waiting for the scans and biopsy to come back. The good news is that it is not cancer but a benign tumor called a Warthin Tumor, that is easily removed. I feel bad that both K and B had to go through all that stress but I’m so happy it turned out not being cancer. There are far too many cancer stories … love to hear one that has a happy ending.

Napping a Lot During the Day

I’m still recovering from all the activities of the family visit this past week. Don’t get me wrong, I enjoyed every minute with my relatives, but by the middle of their visit I was powering out. Yesterday was the fifth day in a row I’ve had a two hour power snooze during the day. I find I get so sleepy after lunch, that I just have to lay down. I’m out in no time at all and I wake up feeling really refreshed.

With all this napping that I’m doing, I kind of wonder if it’s because of being more active than usual or it’s the cancer creeping up in my liver. Either way, it is what it is and I may as well take it in stride and enjoy napping.

Shout Out ~ Comedy Night in Sherwood Park, AB

CTV's Entertainment Reporter Graham Neil to mc. This night was started in memory of his brother who died of cancer last year.

There are five comedians, Andrew Grose, Howie Miller, Atomic Improv, Sean Lecomber and Lars Calleou. All have been to Just for Laughs, and all have their own TV specials. Plus one musical act called The Be Arthurs.

Monies raised will go to the Music Therapy Program at Palliative Care Norwood.

You know that local comedy is always a blast.

What: Comedy Night in Sherwood Park
When: Thurs, Sept 16, 7:30–10:30pm
Venue: Festival Place, Sherwood Park
Cost: $29.00 plus service charges
Tickets: www.festivalplace.ab.ca
Contact: graham.neil@ctv.ca

Conversations at the Clinic

Friday I was at the clinic having my weekly PICC line redressing. I’m glad to say I had my regular nurse. We’ve gotten to know each other quite well and I find it easy to talk to her. So when we started talking about my personal situation with stage four cancer, I felt quite comfortable sharing my thoughts and feelings. We talked about my choice to pursue clinical trials. We talked about whether I had a living will or not and we even talked a bit about end of life. For some reason I was more comfortable talking to her about these things than my new doctor.

Anyways, as we were chatting, I hear my name called and I looked up, sure enough, it was my friend Audrey from The Journey. She just finished seven hours of chemo. Ugg! Still, she had so much enthusiasm in her voice saying how nice it was to see me and how we have to have lunch together next week. You’re on Audrey …. I hope the chemo isn’t too tough on you this time.

Pink Heals Tour 2010 ~ Video

Busy Days Finally Caught Up With Me

Well, it’s been a busy few days around here and its finally caught up with me. Yesterday afternoon, we were watching a movie with the kids and I just couldn’t keep my eyes open so I snuck off to bed for a nap. Oh that was so good. Then we were off shopping again. Tho at about 10 o’clock, I couldn’t keep my eyes open any more so off to bed I went.

This morning once everyone has left to do their vacation stuff, I'm going to have some quiet time. And you know where I’ll be heading … straight to bed for a few zzz’s.

The plan this afternoon is for everyone to meet back here and then head over to Whyte Avenue, get a bite to eat and do some more shopping.

Michael Douglas Talks Cancer with David Letterman

This past Tuesday, Michael Douglas announced on the David Letterman show that he has recently  been diagnosed with stage 4 throat cancer. Here is a five minute video of that conversation.

I Have Clean Teeth Once Again

Most of adult life, I’ve been in to see the dentist once a year and the hygienist twice a year. But when I was diagnosed with mets, that all changed. When I was due for my regular cleaning, I remember asking the Onc about seeing the dentist. Her response was … we should hold off for now. OK … bad breath is not a priority. D talked to our dentist during his visit and the dentist said he can do just a shallow cleaning and there will be no problems. Eventually both Docs worked it out, I delayed chemo one week and had a cleaning at the ~18 month mark.

Well, it’s a year later once again and D said, why don’t you get your teeth cleaned because you’re between treatments right now. So last week I went in and asked if I could get in on short notice. Sure enough, we made it happen … yesterday I had my appointment. Because of my high risk of infection, I again took antibiotics one hour before the appointment.

I’ve been seeing the same dentist for at least 15 years now. He likes to keep up on my cancer situation through D and me and yesterday was no different. He asked how my treatment was going. I said I’m going to be starting PH I clinical trials early next month. He replied, is that a nice way of saying, you’re going to be a guinea pig? I go … yup. He examined my teeth and gave me some encouraging words and off I went. I really do think he is a cool guy.

This morning I checked my temperature and it’s normal at 36°C.