Sunday, September 12, 2010

Christine Lynds, 1957-2010: We will miss you, mom

Dear readers of my mom’s blog,

This is Christine’s son Adam writing this. This is extremely difficult for me to write, but I wanted to post one final message to let her readers know that she passed away early Friday morning. She went peacefully in her sleep at 12:25 a.m.

My grandmother took her to the hospital on Wednesday after having difficulty breathing. It turned out to be a blood clot that went to her lung and the doctors were not able to do anything for her. The nurses in palliative care at the Ottawa General – along with my grandmother – did a great job of making her as comfortable as possible to minimize any pain and help her go with dignity. She didn’t want to be kept alive on machines and have her family and friends see her sick. She also didn’t want to be in pain and have the final stage drag on. She had a very good quality of life up until her final two days (I visited her just a few weeks ago and we spent a week at a cottage on a lake in Quebec together).

I was in Lebanon when I got the call that mom was in the hospital and her condition was deteriorating quickly. The doctors said at that point that she didn't have much time left and probably wouldn't make it through the night, so I spoke to her on the phone and said what I thought was my final goodbye. I booked a flight out of Beirut right away in an effort to get back to Ottawa as quickly as I could. I didn’t think that there would be any chance that I would get to see her alive again, but when I landed I found out that she was still holding on. So I rushed to the hospital and got to see her one last time. I was able to give her a hug, sit with her, play her some of her favourite music and say goodbye in person while she was still alert and could respond to me. For that, I will always be thankful. The strongest person I have ever known, my mom amazed me one final time by hanging on until I arrived. About five hours after I got to the hospital, she went into a deep sleep and never woke up again.

My mom was such an incredible person and mother to me – I attribute so much of who I am to her and am so grateful for everything she did for me. I miss her immensely already and there will be a massive void in my life without her around. Someday if/when I have my own children, I hope that I can be even half the parent that she was to me.

She was also a great friend to a lot of people (she had such a wonderful group of friends and I know they will really miss her, too). Although my mom has passed on, she will live on in the many people she had a positive impact on and all of us who were lucky enough to have known her and care about her. 

Below is my mom’s obituary, which appeared in the Ottawa Citizen today. She wrote it herself.

You are welcome to post any thoughts/comments/questions below. Or if you would rather contact me directly, you can e-mail me at chiassonadam@gmail.com.

Adam



Christine (Chris) Mary Lynds of Ottawa died September 10, 2010 at the end of a full and adventurous life. She was born in Halifax, Nova Scotia, the eldest daughter of Janice Rivest (Rowe) and the late Merlyn Lynds. Christine worked in the field of Human Resources for over 20 years, most recently at Carleton University. A lifetime of passion for travel led her to far off places, such as Europe, India, Nepal, Australia, Vietnam, China, Tanzania and South Africa. She was a past member of the Busting Out breast cancer dragon boat team and enjoyed a variety of activities, including hiking, snow shoeing and cycling. Above all, she was most proud of being a mother to Adam Chiasson, currently living in the Netherlands. She is also survived by her mother Janice Rivest (nee Rowe) of Stevensville, sister Nadine Allen of Fort McMurray, brother Darrell Lynds of Cold Lake, Katey the Wonder Dog and a wonderful community of friends. A memorial service will be held at 2:00 p.m. on September 14 at the First Unitarian Congregation of Ottawa (30 Cleary Avenue). Donations to Breast Cancer Action Ottawa (http://www.bcaott.ca/) in Christine’s name would be appreciated in lieu of flowers.

Friday, September 3, 2010

The cancer clinic - my 2nd home

I have 5 appointments next week; 3 of them on the same day:

1. orthopedic surgeon (re my broken hand)
2. radiation oncologist (re my brain lesions)
3. plurex specialist (re the fluid on my lung)
4. medical oncologist (re changing my chemo)
5. cancer clinic social worker (re trying to make sense of all this).

Yikes!


What I’m grateful for today: Vanilla milkshakes. My appetite isn’t great but I crave milkshakes. My mom is gone to the store right now to get vanilla ice cream to keep me in supply.

Thursday, September 2, 2010

Run for the Cure - Oct 3

I decided that I would focus my fundraising efforts to the BCA run this year. I only like to ask for support for one event a year, but it you missed donating to the BCA run and would like to donate to the Run for the Cure instead, you can do so on my personal fundraising page at http://www.runforthecure.com/site/TR?px=1004992&pg=personal&fr_id=1101.

This will be the 10th year that the JUST DOING IT team of survivors has participated in the Run for the Cure.

Wednesday, September 1, 2010

Crappy update

i ended up in the cancer triage yesterday because of increased shortness of breath and a distended belly. they thought that maybe i had fluid buildup in the belly because of my liver but they didn't find fluid there. they did find fluid in one of my lungs so they are making an appointment for me to possibly have the fluid drained.

the doctor i saw gave me the results of the latest scans and it appears that the current treatment isn't working and the cancer is progressing in my lungs, lower spine and liver. also they found two lesions on the brain that appear to be cancer.

i suspect i will now go back on taxotere, the iv chemo i had last time. i had really good results last time so i'm hoping it will do the same this time.

no news from the ortho specialist. i might just say to hell with it and just live with a baby finger that won't bend.

what i'm grateful for today: that my mom is here to help me and she doesn't complain about all of the hours spent at the hospital having tests and waiting, waiting, waiting.

Breast Fest - apply by Oct 1

Breast Fest Film Festival - Travel Subsidies Available! Inquire and apply by OCT. 1 2010


Rethink Breast Cancer
215 Spadina Ave. Studio 570 Toronto, ON M5T 2C7
T.416-920-0980 ext.228 or 1-866-738-4465
F.416.920.5798
Website: www.rethinkbreastcancer.com

Monday, August 30, 2010

my favorite bday card

Thanks to all you folks that called, emailed and facebooked me today. I'm having a great birthday; lunch with my mom and aunt and dinner with friends.

This email card from Adam made me laugh!

Cancer Self Management Program - Sept 1

This free six week program will help you: Manage symptoms and treatment side-effects, Learn strategies to manage medications, Work with your healthcare team, Set goals and solve problems, Handle difficult emotions, Feel better and enjoy more activities, Make changes to diet and exercise
Start Date: Wed Sep 1, 2010

Date Notes: Free six week program
Time: 7pm
Cost: Free

Venue: Canadian Cancer Society
Address: 1745 Woodward Dr.
Postal Code: K2C 0P9

Contact Email: ottawa@ontario.cancer.ca
Phone: 613-7231744
Website: www.ontario.cancer.ca/

Shred-if For A Cure


Shred-it - Founded in 1988 by Greg Brophy, Shred-it is a Canadian company, committed to helping organizations secure their business information by shredding documents and various media.

Shred-it For A Cure - Each year the Ottawa Shred-it branch donates all funds raised from Shred-it For A Cure events to the Ottawa Regional Cancer Foundation. On the second Saturday of each month between 9:00AM and 1:00PM, the public can bring up to 5 cubic feet of material (1 cubic foot is about the size of a photocopy paper box) to the Shred-it facility and it will be securely shredded for free while you wait. You are encouraged at that time to make a donation (any amount is appreciated) and tax receipts are available.

Not only will you be securing your unwanted personal information and protecting your identity, you will be helping a very important cause.

The location and dates are:

SECURIT/SHRED-IT – 1171 Kenaston Street Ottawa ON K1B-3N9 (613) 270-9457 (613) 270-9457

2010 Shred Dates
September 11, October 9, November 13, December 11

Yaron Givati
Inside Sales Representative
Shred-it – Ottawa
T: 613.270.9457 613.270.9457 EXT 70394
F: 613.270.8895
E: yaron.givati@shredit.com
Making sure it’s secure

Tuesday, August 24, 2010

Tips on how to forget your health worries – My “New Normal” is all about ‘fun’, by Amy Lessack

I found an entry by Amy Lessack on the LBBC (Living beyond Breast Cancer) website that I thought was worth sharing. Amy was diagnosed with metastatic bc at 43 in 2008.

"Well, what I learned when I was first diagnosed in 2002 when I was 36 is that every day is a gift. Now, I am sure that sounds very trite and I don’t mean it to be. Believe me, there are still many days that don’t always feel like a gift. However, to have the day, even if it is a crappy one, is still one more day alive. For me, that’s a good day."

Read the full article

What I'm grateful for today: That I'm going to see the EAT PRAY LOVE movie this afternoon. And we'll probably want to go out for Italian food afterwards!

Monday, August 23, 2010

Short update

I'm typing this with one finger, It was confirmed that the hand is indeed broken and I am wearing a splint (kind of a half-cast). My GP is arranging for an appointment with an orthopedic surgeon but I am obviously hoping that surgery won't be necessary.

Adam has been here and gone. His visit flew by far too fast and I am missing him since he left on Sunday.

My mom is still here and will stay until after my birthday on the 30th. I think she's getting bored. It's pretty sad that my 72 year old mother has a more exciting life than I do!

Friday, August 13, 2010

1 finger typing

my blog posts over the next few weeks will probably be brief. it hasn't been confirmed but it appears that i have broken some bones in left hand.

i woke up last night with acid reflux and, in a fog i suspect was caused by the codine cough med i'm taking, i somehow managed to fall down my stairs on the way for a glass of milk. this morning my hand was swollen and my baby finger is pointing off to the side at a rather odd angle.

i saw my family doctor and he said to put a tensor bandage on it and keep it elevated. he could send me for xrays but it would be monday before he gets the results and by then i'll be out of town. so he suggested i go to the hospital in st. jovite; shorter waiting time in a small town hospital and, being close to the ski hills, they are used to dealing with this kind of fracture.

i was at the general hospital today to pick up my xeloda pills and thought i'd take a chance and try the emerg. they said it would be a 2-3 hour wait. in my experience they usually lie so i figured i was looking at 4 hours so i left.

i needed this like i need a hole in my head. speaking of... i'm having an mri on my brain next week to have another look at my aneurysm.

Thursday, August 12, 2010

METAvivors

When I was at the conference in Philly, I picked up a car magnet from METAvivors, a charible organization for women with metastatic cancer. I finally got around to visiting their website at http://metavivor.org/index.html.


Here's an excerpt from an essay by one of their founding members.

We ask that the public understand that the 110+ Americans dying every day from breast cancer [I don't know the Canadian stats] are not dying because they were not vigilant or were not courageous enough, and they are not dying because their will to live wasn’t strong enough. To the contrary, it takes tremendous courage and the strongest of wills to face this diagnosis squarely, to wear a smile on your face and move forward with your life while wondering what tomorrow’s test will reveal, how your body will react to the next series of treatments and/or clinical trials ... never knowing when your oncologist will tell you he has run out of options or your body will not tolerate any more drugs, and hoping against hope that there will be a medical breakthrough before that time arrives. No … these people are not dying because they were somehow inadequate to the task, they are dying for the simple reason that the lack of research has kept this disease un-survivable.

Sunday, August 8, 2010

Upcoming events

Sept 11: Ride the Rideau

Sept 15: Living Well Beyond Breast Cancer

Sept 18: Sacred Circles Workshop

Oct 6: Read for the Cure

Nov 19: BCA Autumn Gala and Auction

Oct 3: Run for the Cure

Sacred Circles workshop - Sept 18


Labrynth Walking, Creating Mandalas and Sacred Circle Dancing

Date: Sept 18
Time: 9:30 - 5:00
Location: St. John's March/Kanata
Cost: $110

For a copy of the flyer email beverly@beverlychen.com.
For registration contact Cynthia Sabiston at 613-692-0302.

No Pink for Profit - Run for the Cure team

I'm passing this on from Laurie K's blog. She's looking for Ottawa women to join her Run for the Cure team.
---------------------------------------------------------
Ottawa women friends and family,

Last week end, my friend Cathy Remus and I were talking about doing the Run for the Cure on October 3rd. I suggested forming a team named something along the lines of "We hate pink crap but we hate breast cancer even more."

Elegant slogans were never my forte.

Cathy reminded me that the brilliant Karin Jordan had already come up with "No Pink for Profit." I think this is perfect and I have registered a team with that name. Want to join me? We need ten women (anyone can participate but I'd really like to form a women's team) and you can run it or walk it, raise money or not.

All it would involve on your part would be registering, raising money if you want (or just paying the registration fee) meeting at the start of the run to get your team t-shirt and then either walking or runnning 5k at your pace. Then, as many of us who want to could meet up at the end and go out for a yummy breakfast.

I have a bit of an agenda here, other than the exercise, friendship and a good cause. How cool would it be to have a really large group of women wearing "No Pink for Profit" on their Run for the Cure t-shirts? And if the name is rejected by run organizers (which I truly hope doesn't happen), we have another opportunity for education.

So, what say you? Please feel free to forward this message to any women you know. I want to cast as wide a net as possible.

Laurie

p.s.: You can sign up here https://secure3.convio.net/cbcf/site/TRR/RunfortheCure/CentralOffice?fr_id=1101&pg=tfind

Saturday, August 7, 2010

A short update

I saw my onc yesterday but it was pretty routine. I hadn’t had a scan or test, so there was nothing to report – I’m not even really sure why I had the appointment. I see the radiation oncologist about my aneurysm on Monday.

The big news is… that Adam (aka the prodigal son) arrives today from Holland for 2 weeks! I can’t wait to give him a big hug. My mom will join us towards the end of his visit and she will stay until after my birthday at the end of the month.

What I’m grateful for today: No contest, Adam’s visit!

Tuesday, August 3, 2010

Living well beyond cancer - starts Sept 15

The Canadian Cancer Society will offer a program this fall for post-treatment cancer patients and their caregivers who strive to live a healthy life.

Living Well Beyond Cancer is based ont he Chronic Disease Self-Management Program researched and developed at Standord University.

This free program is conducted as a 2-hour workshop held weekly for 6 weeks. The highly interactive meetings focus on building skills, sharing experiences and mutual support. Skills are taught to support day-to-day living with and beyond cancer, and to maintain or increase life's activities.

Living Well Beyond Cancer will address: techniques to deal with the psychosocial aspects of cancer, appropriate exercise for maintaining and improving strength, communication and healthy eating. You will learn how to:
  • Manage symptoms, treatment side effects and medications
  • Work with your health-care team
  • Set goals and make plans to achieve goals
  • Solve problems and handle difficult emotions
The next session will be held at the Canadian Cancer Society Ottawa office at 1745 Woodward Drive from 7:00 pm to 9:30 pm, starting Wednesday Sept 15, for 6 weeks. Space is limited, so please register by contacting the Ottawa office at 613-723-1744 ext. 3621.

Sunday, August 1, 2010

Sisters

Nadine was back this week for part II of her visit. In between her visits she was in Boston on business and in Halifax with her daughter (my niece) Erin.

We spent part of one day at the Nordic Spa, relaxing in the pools and the saunas. We curled up in these lovely hanging chairs that felt like rocking cocoons and read and napped. In the evening we went to see The Kids are Alright (I’m not sure that the kids are truly ‘alright’ but it was an interesting movie).

On her last day here Peggy came by. Nadine made sausage/potato/squash tacos, so we had no problem talking Peggy into staying for lunch. It was a day of great eating because we went to Dianne’s for dinner and a swim (although I was the only one who actually swam).
It was wonderful to just spend time with Nadine. We’re very different people, but there is a life-long bond between us that keeps us connected through the good times and the bad. I’m glad that she’s my sister.

After she left, I spent most of yesterday napping. It seems that when I have company or when I was away in Halifax, it tires me out and I need some recovery time. But it's worth it!

Tuesday, July 27, 2010

Share your voice

I just took a Faces of Metastatic Breast Cancer survey. It’s interesting, because as you answer each question, it gives you a chart with percentages of all of the answers from all who have taken the survey.

In answer to the question “Which word best describes how you feel during “good” moments?”, respondents said:

35% thankful
27% hopeful
26% optimistic
5% encouraged
7% other

I wasn’t sure if the majority said ‘thankful’ because they were thankful for the ‘good moment’, or if they felt thankful in general. I wonder if being thankful contributes to the ‘good moments’ or even sometimes creates them. I think gratitude for all of my blessings is important and contributes to the quality of my life. Some days I have to dig deep, but there’s always something to be grateful for.

In answer to the question “Which word best describes how you feel during "bad" moments?” respondents said:

27% frightened
23% overwhelmed
14% isolated
15% discouraged
12% other
9% angry

I answered ‘overwhelmed’ but I was surprised that ‘angry’ was so low. I think we all experience anger, but I guess you just can’t stay there for long (or your head with explode!) so maybe that’s why it’s not a emotion that ranked high for this question.

In Elizabeth Kubler-Ross’s book ‘On Death and Dying’ she outlines the 5 stages of grief of someone who is facing death as:

1. Denial and isolation: "This is not happening to me."
2. Anger: "How dare God do this to me."
3. Bargaining: "Just let me live to see my son graduate."
4. Depression: "I can't bear to face going through this, putting my family through this."
5. Acceptance: "I'm ready, I don't want to struggle anymore."

I’m not sure where it fits but I’d add “Panic and desperation” to the list. I felt panic for the first time when I found out that the loss of my voice was from cancer and not just larangitis. Dr G said it was because it was the first time I actually had a symptom from the cancer. Before that, any ‘symptoms’ were just side effects from the treatment. As for desperation, I find myself looking for information online on foreign cancer clinics, bone marrow transplants, alternative treatments and anything else that might help me to become one of the miracle stories that we’ve all read about.

Of course, the percentages will changes as others take the survey. You can take it yourself at http://facesofmbc.org/?tr=y&auid=6699537

What I’m grateful for today: All of the leftovers in my fridge from a wonderful potluck dinner last night with friends. I think I hear a cob of fresh corn and some cheesecake calling my name!

Traveling with Metastatic Breast Cancer



"As anyone facing a metastatic cancer diagnosis knows, there is nothing like a life-threatening illness to add a sense of urgency to your "I’ve-always-wanted-to-do-that" list. Visiting all seven continents is one of my goals. Since my mets diagnosis in 2007, I’ve made travel a bigger priority."

Travel is also a priority for me. My son Adam lives in Holland and I am hoping to go for a visit this fall. One of the big concerns I have is medical coverage. I went on an Africa safari a month after a wedge resection of my lung to remove a tumor. Both Blue Cross and Great West Life (my work insurance) told me that they couldn’t offer me coverage.

I’m excited to read in Claudia’s article that she has been able to get insurance that covers pre-existing conditions. I went on the travelguard.com website that she referenced and the website says:

"A pre-existing condition exclusion applies to medical conditions and/or symptoms that existed prior to travel. There may be no coverage if you have a pre-existing condition."

I plan to contact them by phone to get more information.

Sunday, July 25, 2010

Visit with my sister

I haven’t been writing much lately. I’ve alternated between being very busy and resting/recovering.

I’m beginning to realize why they give you a week off Xeloda after two weeks on. I think the side effects start to kick in after two weeks, because I seem to experience more on the weeks off. I've had my share of nausea and 'the-fast-poopies' this week (too much information!); also some abdominal pain.

The good news is that my feet and hands are still doing OK. Anka gave me a pedicure last week (complete with flower decals) and I’ve been putting castor oil on my feet at night (and then socks because it stains), thanks to a suggestion Krystyna sent me from bcmets.org.

My sister Nadine was here for a few days last week. She lives in Alberta so it’s been good for us to be together to talk about how my illness is emotionally affecting both of us and to just hang out. It might be just one person that actually has the cancer, but it affects the whole family. I really felt like I needed my sister, so I'm so glad to have this time with her.


I thought I should explain why she has a huge bowl of food in front of her in the picture... Nadine is a fabulous cook and she made a wonderful chicken salad so I made her pose with it. It was yummy and I had enough for another meal after she left!

What I’m grateful for today: That Nadine’s coming back on Wednesday for part 2 of our visit!

Friday, July 23, 2010

Ride the Rideau - Sept 11

This is a challenging ride down the river to raise some serious funds. Ride the Rideau is a 100-kilometre bike tour to support some of the most important cancer research in the world.

Thursday, July 22, 2010

Laurie Kingston on TV

Laurie Kingston is a blogger, author and mother. She is also living with cancer.

Laurie was recently interviewed for a TV spot on CBC News Network about using blogging as a way to process what it’s like to deal with life with cancer. You can view the video at http://www.cbc.ca/video/#/News/TV_Shows/Connect_with_Mark_Kelley/ID=1549366307.

In the video, Laurie talks about her young children and how she wants to protect them. I was 40 when I was diagnosed, and my son Adam was 20 by then. While I’m glad that he didn’t have to deal with this as a child, I can still identify with how Laurie feels about being a mother with cancer. It breaks my heart when I hear the pain in Adam's voice on the phone when I have to tell him that I’ve had another bad CT scan or some other news that isn’t very encouraging. He is a grown man of 33, but he will always be my child and I wish that I could shelter him from the reality of having a mother with stage IV cancer.

Laurie also talks about making friends with other people with cancer. The support is great and no one can relate like someone who has been there. But if you are part of a cancer community, through blogging or otherwise, you are bound to lose some friends along the way. And it hurts like hell. But if I could rewind the tape of my life since my diagnosis, I wouldn’t do it differently. I’m grateful for the amazing people that have come into my life, even though I've had to suffer the pain of losing far too many of them.

Friday, July 16, 2010

Debbie Downer visits the oncologist

I had an oncology visit today but I cheated and got my CT scan results from medical records 2 days ago. I wanted a copy of the report so I’d know what questions to ask.

The short of it is that the cancer is continuing to progress and there are now mets in my liver. The LC (lymphangitic carcinomatosa) has grown and spread further into the lungs.

The good news is that there are no mets to the brain. The bad news is that the brain scan shows an aneurysm. (As if I don’t have ENOUGH going on already!) Dr G says that, although it’s not related to the cancer, the best way to deal with it is probably to radiate it.

Because the scans were done as a baseline around the time I started the Xeloda, my onc wants to continue for another round or two to have something to compare to. I’m not in a hurry to go back to IV chemo so I’m going to hang in there and give the Xeloda a chance to work.

What I'm grateful for today: I had so many offers from people to go with me today that I could have had my own entourage. I suspect they discourage group appointments, so thank you to Anka for coming with me and representing my 'peeps'.

Thursday, July 15, 2010

Cancer Survivors Discover the Power of Blogging

Blogging has been a great way for me to let people know what going on with me, process my feelings about my diagnosis and treatment, and to connect and share information with other people living with cancer.

Here is a recent NCI Cancer Bulletin about the benefits of blogging.

Cleaning for a Reason

If you know any woman currently undergoing Chemo, please pass the word to her that there is a cleaning service that provides FREE housecleaning - 1 time per month for 4 months while she is in treatment. All she has to do is sign up and have her doctor fax a note confirming the treatment. Cleaning for a Reason will have a participating maid service in her zip code area arrange for the service.

This organization serves the entire USA and Canada and currently has 547 partners to help these women. It's our job to pass the word and let them know that there are people out there that care. Be a blessing to someone and pass this information along.

Cleaning for a Reason

Tuesday, July 13, 2010

Return to Peggy's Cove

My fellow wharf hag, Dianne, and I spent several wonderful hours at Peggy’s Cove, walking on the rocks and watching the waves crash against them. It was great to be there with someone who ‘gets it’; who can appreciate the magic and the power of my ‘special place’.
I'm not sure what it did for my body, but the visit was definately good for my soul.

BCA Certificate of Appreciation

The folks at BCA (Breast Cancer Action) presented me with a certificate thanking me for the highest sponsorships in their recent walk/fun run. They also gave me a lovely framed picture of a butterfly as a gift.
In the picture (from left to right): me, Karen Graszat, Executive Director and Rosalind Bell, President.
Thanks again to all my sponsors and thank you to BCA for all the great work they do in our community.

Saturday, July 10, 2010

Hello from Nova Scotia

Having such a good time in Nova Scotia that there’s no time to write! Here's what we've been up to:

Walked along the Halifax harbor front, coffee at Cabin Coffee (next to a table of senior hippies, one of them with grey dreadlocks – that’s so ‘Halifax’), visited my old swimming hole at Kidston Lake, sat on the rocks at Herring Cove, climbed the Dingle Tower (slowly, but I made it to the top!), coffee with Frances and her sister, drove through the lovely town of Mahone Bay, had lunch overlooking the water in Lunenburg, swam in the ocean at Hirtles’s beach and hiked to the ‘secret beach’, and had a visit with my awesome niece Erin last night.

The highlight was our trip to Peggy’s Cove on a beautiful clear day. Yup, the rocks were still there, the waves were still there, the magic was still there.

Today we are going Tidal Bore rafting. Will write more later … if we survive. :-)

Tuesday, July 6, 2010

Chalkbot - Write it on the road

Right now, Lance Armstrong is speeding along the first leg of the Tour de France. He's riding to win—but he's also riding to raise awareness and improve the lives of 28 million cancer survivors worldwide.

You can be part of Lance's ride in an amazing way by having your personal message written in chalk along the course of the race. A high tech robot called Chalkbot will receive your message and print it on the road where all of the riders, fans, and media from around the world can see it. Chalkbot will also send you a photo of your message with the exact location it appeared on the course.

----------------------------------------------------------------------------
Here's my message for Lance.

(Don't make the same mistake I did; if you put your name in the message it will appear twice).

Voice amplifier

After researching Canadian suppliers with no luck, I finally just ordered a voice amplifier directly from ChatterVox. Another blogger is using it and recommends it. I can't wait to be able to carry on a conversation in a restaurant again!

On another positive note, I finally went to see a social worker at the cancer clinic yesterday. We hit it off right away and I felt that I got a lot from the hour I spent with her. I made another appointment for next week. This process isn't easy and I can use all the help I can get.

Sunday, July 4, 2010

Return to the Om tent

Today was a perfect day.

Jilly came by this morning with a lovely sun hat for me and pansies from her garden.

Then Kate and I headed off to Anne and Ron’s cottage mid-day. We had several swims in the lake and the water was like silk; warm enough to make it easy to get in but still cool enough to be refreshing.

We spent some time reading (Marley and Me – a gift from Barb) in the Om tent. There has been an addition this year of a side curtain which acts as a shade from the sun. I wish had brought the camera with me because Katey had a 5 minute standoff with a bull-frog and at one point I looked up just in time to see a beaver swim by us.

Sometimes I wonder at how Katey and I found each other. She is so easy to take care of and I get so much more in return than I give. She’s a wonderful companion to spend the day with; she doesn’t complain and she’s perfectly happy to do anything I want to do. I swear that on the ride home she kept looking up at me from her car bed with a smile on her face, as if to say “Thank you for the great day!”

Katey's blog

Elizabeth Edwards talks with Larry King about her cancer

Friday, July 2, 2010

Update on Decadron and voice amplifier

Did I mention that Decadron makes me CRAZY? I'm getting the Cabbage Patch Doll puffy face, eating like a weight lifter, tired but can't sleep - all side effects from this lovely little pill.

Jen heard back from the nurse and the good news is that I can start to wean off it. I'm already taking 1/2 a pill twice a day. I'm supposed to take that down to 1/4 a pill for a few days and then an 1/8th. Not sure how I'm going to cut that little pill in 8, but I'll figure something out. Maybe if I just lick it twice a day, that will do it.

Dr G has referred me to a speech therapist to see about getting a voice amplifier. I don't think I really need an appointment; I'd just like to know where I can buy one here in Ottawa so I don't need to order it off the internet. Thanks to everyone who passed on leads. I'm getting closer and should have something soon that will make having a conversation a bit easier and not so tiring. Dee pointed me to the Cheeky Librian's blog and she is using something called the Chattervox.

Jennifer also asked the nurse if I could email my questions, but it sounds like that's not an option. It's hard to call when I have questions, so I'm relying on Jen and other friends to help me out when I need 'a voice'.

The silent biker

I may not be able to talk, but I can still bike! I went out with the Friday bike group this morning and I did OK. I had planned to turn back when we got to any hills, but they stayed on the flats from the Island Park Bridge to Britannia Park.

There was a huge herd of Canada geese (I think they are actually called a 'gaggle') crossing the bike path, so in true Jennifer fashion, she decided to direct them. :-)
 
In the picture: Judy, Sheleigh, Jean, Jennifer, Bev

Canada Day fireworks in Beacon Heights

I'm not sure why the colors didn't come out on my pictures, but we had some spectacular fireworks on the 'dog hill' last night. All the neighbours brought chairs, kids ran around with sparklers and neon lights, and the weather was perfect for sitting back and watching the show.

Thursday, July 1, 2010

Happy Canada Day

No apologies for the bad hair day, eh! (Mine, not Katey's)

Dog blog alert: More pictures of Katey posted to her blog.

Wednesday, June 30, 2010

This is my 2nd day without taking Xeloda, so I'm not sure why I'm feeling nauseous. The nausea isn’t bad, but I usually feel it in the afternoon so I take a Stemitil.

Jen left a message for the PDN (personal designated nurse) about whether to continue taking the Decadron (steroid) during the week I’m off Xeloda. Also, she asked if there’s a way I could email with questions rather than called.

And one other thing, she asked if I could be referred to a speech therapist about finding a voice amplifying device to make conversations easier on me, especially in public places. I bought a small white board at the $-store today and may resort to that at times when I’m having a hard time being heard. It was either that or an etch-a-sketch.

Speaking of whiteboards, I once taught a course where I started off on the wrong foot by using a permanent marker on the white board at the front of the room. What made it worse what that what I wrote was… my own name! So there was no question who the idiot was that used the wrong marker, at least for a few days until I found some solvent to remove it.

Here's what I think I'll write on my mini-whiteboard in permanent marker.

What I’m grateful for today: I now have a cleaning lady! I just came back from walking the dog and she was cleaning the oven. (I sort of forgot that you were supposed to clean that thing).

Tuesday, June 29, 2010

Phone calls

One of the challenges of losing my voice is that I find it hard to talk on the phone.

I had a situation the last few days where I had my vacuum in for repairs and I couldn't call to check on it. I kept having to drive there and it was never ready. So Jen helped me out by calling them for me. Simple things like calling the doctor’s office to ask a question becomes an ordeal.

What I'm grateful for today: That I have lots of people that I can call on (or rather email) in a pinch to help me out!

Monday, June 28, 2010

First round of Xeloda finished

I just took my last 3 horse pills (aka Xeloda). I've been on them for 2 weeks and now I have a week off before starting the cycle again. I've only had some mild nausea but the Decadron (steroid) is still making me crazy. The doctor said we'd know fairly quickly from my symptoms if the chemo is working, but I'm no seeing any improvement in the voice, coughing or breathing.

What I'm grateful for today: A short nap on the deck this afternoon in the shade

Sunday, June 27, 2010

Pilgrimage to Peggy’s Cove

It seems like every time I’ve struggled with my health, I’m drawn back to the ocean of my birthplace for healing.

Dianne knows how special Peggy’s Cove is to me and so she suggested we take a trip there together. We plan to go in early July, before I go back to the oncologist.

What I'm grateful for today: The opportunity to let the power of the rocks and the ocean work their magic on my mind, body and soul.

Looking for advice on microphones and voice synthesizers

Speaking does not hurt my throat but it can be exhausting to try to carry on a conversation for long. So I am looking for some ideas for aids that might make speaking easier for me. I’ve been looking on the internet but, because technology makes my head spin, I’m finding it all a bit overwhelming.
Does anyone have any suggestions on the following?

1) A microphone to project my voice. I use a lot of breath to push the words out through my lips. I thought if I could get microphone it might make it a bit easier. (Picture Madonna with a headpiece. Minus the pointy tassled boobs). Do I need a receiver or is there something where you can just speak into it and it will project the sound?

2) A speech synthesizer for my laptop. It’s definitely easier to type than to speak. I’ve been looking at a product called TextAloud that reads what you type out loud. Does anyone know anything about these programs and what I should be looking for?

Thanks for your help!

Saturday, June 26, 2010

BCA Walk

Despite the rain, today’s Breast Cancer Action (BCA) walk was a huge success. 
My mom walked ahead with Bev, and I think Alice and I were the last two to finish the 5k. Alice and I may have our limitations, but we were determined go all the way. And we did it! Together! A group of friends cheered us across the finish line.
It meant a lot that my mom was here to participate today. Below is a picture of her dancing during the warm-up (which won't surprise anyone who knows her!).
I don’t have the final count, but I know I had over $2,500 in pledges. Thank you to everyone who sponsored me. The money is going to a very worthy cause: Breast Cancer Action.

As mentioned before, I did the walk today in memory of friends Mary O'Rourke and Meridy Foster.

Friday, June 25, 2010

Rant on 'Stuff'

We didn’t have a lot growing up and I struggled with money in my early adulthood. I know how to stretch a dollar, plan a week’s menu around the store flyers and have 101 recipes for ground beef.

Maybe that’s why I’ve clung to ‘things’, worried that I might just need them some day. At one time my basement was lined with unmarked boxes of 'things' that I didn’t even know I had, but I couldn’t bring myself to part with them.

In 2000 I trekked through villages in the mountains of Nepal where, other than the time they spend in very basic shelters to protect them from the environment, the people live outside. The children ran up and down the mountains like goats and always had enormous smiles on their faces.

I’m not saying that I understand what hardships the mountain people might have, but for the most part, they somehow appeared amazingly happier than North Americans. I came home from that trip and looked around my home and wondered why I needed so much ‘stuff’.

I made some life changes after that trip and temporarily shared a house with another woman for a year while I tried to figure out what to do with the rest of my life. Being an all-or-nothing kind of person, I did a major purge and fit everything I had left into 2 bedrooms and a small storage unit. It felt like freedom.

In The Story of Stuff, Annie Leonard says: "We, as consumers, are compromising our health and well-being, whether it’s through neurotoxins in our pillows or lead leaching into our kids’ food from their lunchboxes – and all this Stuff isn’t even making us happier! We work hard so we can buy Stuff that we quickly throw out, and then we want new Stuff so we work harder and have no time to enjoy all our Stuff… "

Future Shop has a brochure at their counters that says: DON'T FIX IT, REPLACE IT! How environmentally irresponsible. Shame on them!

I now live in a 4 bedroom house (5 if you count the basement guest room) and I once again own more things than I need. But I buy fewer things and the purging is easier now because I know it’s just ‘stuff’. While I do appreciate some items that are special to me and enjoy what I have, those things have never brought me happiness. What has brought me happiness is: time spent with people I love, nature, travel to places where I learned something about myself and others, simple pleasures like the feel of bare feet on a warm deck, or doing something for someone in need.

Happiness comes from spiritual wealth, not material wealth... Happiness comes from giving, not getting. If we try hard to bring happiness to others, we cannot stop it from coming to us also. To get joy, we must give it, and to keep joy, we must scatter it.
-- John Templeton

Thursday, June 24, 2010

Mute

I’m upstairs in the office on my computer. My mom just yelled up “Bang on the floor once if the answer is yes: Did you take your pills?” We’re getting creative about finding ways to conserve my voice.

It gets much worse as the day goes on and I overuse it. I’m using a lot of hand gestures. I didn’t realize that, as an introvert, I’d miss talking so much. It’s rather isolating (and very tiring) to struggle to join in a conversation.

I have a feeling I’ll spend even more time on the computer now...

Canoe trip

I was supposed to be on a canoe trip this week. A group of friends is canoeing along the Rideau, camping at a series of locks along the way. Because I can’t paddle (radiated rib, shortness of breath, etc), my mom and I agreed to visit their campsites and help shuttle an extra car from site to site.

The first day was unfortunately a wet one for the paddlers. We met them at Jones Falls where they set up their tents and cooked dinner in the rain. We stood under a tarp and ate a fabulous Indian dinner, despite the weather.

Mom and I checked into the Kenny Lodge next door and our sun porch became the party room for the evening. Breakfast came with our room and we sat in the window of the lovely dining room overlooking our friends’ campsite on the other end of the locks.

Katey’s ‘aunties’ agreed to take her with them on their canoe adventure for the day. She looked a bit uncertain as they headed off through the locks but she had a great time. (If you look closely at the picture below you can see her little head next to Margot). Her Nanny was worried that she’d fall out of the canoe but she had her life vest on and I knew the aunties would take very good care of her.
We all met up at Chaffey’s locks yesterday afternoon and the sun was shining. After participating in a scavenger hunt and trying to have a nap, I decided that I was too tired to stay longer and we headed for home. (OK, truth is, my mom was worried about me, but that’s what mom’s do).

BTW - Everyone on the canoe trip has had breast cancer. Sometimes I forget that, because we are just wonderful friends who happened to meet up on the Busting Out dragon boat team.

Participate in a one-day focus group for women living with metastatic breast cancer

CBCN is currently recruiting volunteers to participate in an important one-day focus group for women living with metastatic breast cancer. The main purpose of the focus group will be to gain valuable insights into the unique needs of metastatic breast cancer patients; build a community of support; and raise further awareness of the issues specific to women with metastatic breast cancer based to better inform decision making and programming.

By participating in this focus group, you will be directly involved in working with CBCN to:

○ Provide input on what information, resources and support services have been beneficial to you; as well determine what information and support gaps still exist

○ Participate in a discussion surrounding the benefits of a closed online support group which could connect metastatic breast cancer patients from across the country

○ Provide direction and input on what types of programs CBCN could develop to help support metastatic breast cancer patients

○ Provide vision on how best to increase understanding on access to new treatment options for metastatic breast cancer patients

Portions of the focus group will be filmed to capture your personal story / insights and this film will be shared with other metastatic patients at similar events. However, you may opt out of this should you choose.

Timing for the focus group is currently being considered for the end of July 2010 or the end of August 2010 in Toronto, Ontario. Travel and accommodation costs will be covered for those traveling from outside of Toronto.

If you are interested in participating in the focus group, please contact CBCN chief executive officer Jackie Manthorne by email at jmanthorne@cbcn.ca . Please indicate in your reply to if you have a preference regarding the timing so we can determine what works best for the all participants.

CBCN website