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.