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).

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!

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

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!

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.

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

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

Katey TWD

I'm not a cat person, so I have to balance out the last picture with a picture of Katey. I know it looks like I'm choking her, but she likes it, honest!

There's also a picture with her 'nanny' on Katey's blog.

Roid-rage

It's 4:20 am and I can't sleep. I have what Sue Hendler used to call 'roid-rage'. Decadron makes me kind of manic.

What I'm grateful for today: No real side effects from the Xeloda yet. The hands and feet are looking and feeling great so far. I haven't had to take a nausea pill yet and only a hint at what we referred to as a case of the 'fast poopies' when I was travelling in Nepal.

(Sorry, but bowel movements become a normal part of everyday discussion when one is going through cancer treatments.)

Relay for Life pictures

Here are a few more pictures from the Relay for Life.

A friend got a luminary done in my honor and in Mary's memory. Thank you so much Rita!

Rita is below on the left in yellow.

Father's day gift

Adam sent me a link to this story about a woman he worked with in Calgary. Stephanie is 30 years old and she is giving a kidney to her father who has diabetes.

Adam wrote: "Such a nice story. Wish I could do something like that for you."

Did I ever mention that I have the best son in the world? And the best mom? And the best friends? And the best dog?

Breast Cancer Action 17th Annual Manulife Walk and Fun Run - June 26

Dear friends:

Most years I have solicited donations for the Run for the Cure in October. Because I don't know where I'll be at with my treatments by the fall, this year I have decided to switch my fundraising efforts to the Breast Cancer Action (BCA) walk on June 26.

I will be walking in this event in memory of Mary O’Rourke and Meridy Foster.

BCA is a local survivor-directed, voluntary organization. I have personally participated in many of the BCA programs, including the Busting Out Dragon Boat Team, as well as fitness, meditation and yoga classes.

If you would like to sponsor me for this event, you can do so on the BCA website, using either a credit card or PayPal. (You don't need to have a PayPal account to pay by credit card).

Please be sure to click on Add Special Instructions to the Seller to indicate that you are sponsoring Christine Lynds, just before you check out. I will be participating as part of a team called Boobs on the Run.

Thank you for your support,

Chris

PS - If you do sponsor me, it would be helpful if you send me a quick email or leave a comment to let me know. I don't need to know the amount, but I just want to reconcile my list of sponsors with BCA's.

Hope

Here's a lovely picture a friend sent me from the Relay for Life. Thank you Melanie!

I just received some lovely pictures of the time I spent with the Calgary gals at the conference in Philadelphia.

What a great group of women: supportive, courageous, fun and just darn good company!

In the picture: Sue, Krystyna, me and Danie

Hugs to all the amazing women I met in Philadelphia! xo

Blah, blah, blah

According to my CT scan, I have lymphangitic carcinomatosa. Don’t bother googling it; it just says things like: “poor prognosis”, “fast progressing” and “short survival time”. As Daria would say "blah, blah blah".

I talked to my oncologist last night and he said that it’s not good news but not to panic yet (easy for him to say!). He asked that I give them a chance to try and get it under control and that if the Xeloda doesn’t work, they can add Taxotere (I had good results with that for the tumors in my lungs a few years ago).

I’m trying my best to take his advice. After all, what choice do I have?

When I started this blog, I wrote this on my profile: “While it may be necessary to go to the 'dark side' at times, I want to create a blog that is about living in the moment and finding joy in the small things.”

It was so much easier to live in the moment and find joy in the small things when I didn’t have actual symptoms from the cancer.

I guess this is the ‘dark side’.

Mass for Mary

My mom has arranged for a mass to be said for Mary on July 3rd at 5 pm at the Annunciation of the Lord Parish, 2414 Ogilvie Rd, Gloucester.

Many people spoke at today’s service and shared wonderful memories from Mary’s life. Anka did a great job of reading what I wrote.

Article in today's Citizen

There is a lovely tribute to Mary in today’s Ottawa Citizen.

Because I am unable to speak (literally) at her memorial service today, Anka will be my voice and read something that I wrote.

Mary and I shared of love of travel. This picture was taken on a trip to China and Vietnam that we took together almost 6 years ago.

Read for the Cure - Oct 6

Tickets are now on sale!

When? Wednesday October 6th, 2010
6:30 Appetizers and cash bar
7:30 Authors program
Seating is first come first served

Where? The Ottawa Marriott Ballroom (100 Kent Street, corner of Queen)

Tickets: Tickets are $85.00 and only 280 tickets are available through http://www.ticketweb.ca/

Support a great cause, and thanks to Random House of Canada you will receive three books by the evening’s featured authors.

Read for the Cure is a unique opportunity to have a night out with friends to hear acclaimed Canadian authors talk about their experiences as writers - and contribute to a great cause at the same time. For the second year Read for the Cure is being held in Ottawa, with two other events in Toronto.

For more information

A shit-storm of bad news

On the tail of losing friends Meridy and Mary in a few short weeks, I received the news on Friday that I was dreading about my lost voice. It turns out that it is cancer related after all.

There is cancer in the lower trachea and the bronchus leading to both lungs. My understanding is that the cancer is pinching on the nerves that go to my larynx, which is why I have lost my voice. The plan is to start on Xeloda, an oral chemotherapy drug, on Monday.

What I’m grateful for today: Anka, for listening and letting me cry on her shoulder this weekend.

Mary

My dear friend Mary died peacefully at home on Thursday.

Tuesday was her birthday and I went by with a gift - a photo album I put together of pictures of so many happy times our group of friends spent together: dragon boating, hiking, skiing, biking, snow shoeing, and travelling. My heart is breaking but it was wonderful to look back over all those times and to see smiling pictures of Mary looking healthy and active.

Mary slipped into a coma later that day and never woke up. I will write more about my memories of her at a later time. For now, here is her obituary from today’s Citizen.

O'ROURKE, Mary Clare

Peacefully at home on June 10, 2010 in her 60th year after a lengthy illness with cancer. Mary was born on June 8, 1951 in Manchester, England, emigrating to Canada with her family at age three. She attended St. Thomas High School in Pointe Claire, Quebec and Queen's University in Kingston, Ontario. After graduation, she served in the public service of Canada in Ottawa for her entire career, attaining executive rank. Reading was Mary's favorite form of recreation but she also enjoyed cycling, skiing and especially travel. She was also an avid dragonboater and was a founding member of the breast cancer survivor dragon boat team Busting Out. Mary leaves her loving husband Eric Smart, her sisters Patricia O'Rourke of Montreal and Frances O'Rourke and her husband Joe Joyce and their daughters Catherine, Joanna and Molly of Dublin, Ireland and a wide circle of friends. The family will receive friends at McEvoy-Shields Funeral Home, 1411 Hunt Club Road at Albion Road from 7-9 pm on Wednesday June 16, 2010. A memorial service will be held at 11 am on Thursday, June 17, 2010 in the chapel of the funeral home. In lieu of flowers, donations to the Ottawa Regional Cancer Foundation, 704-265 Carling Avenue, Ottawa, ON K1S2E1, in memory of Mary, would be greatly appreciated. Online condolences may be sent to www.mcevoy-shields.com.

Marlene's Meal Makeovers

Check out Marlene's Meal Makeovers at http://www.marlenesmealmakeovers.com/. Marlene made some lifestyle changes after being diagnosed with stage 3 breast cancer in 2008 and now has a Rogers TV show about planning and cooking healthy meals.

You can view episode 1 directly from the website. You can also read Marlene's blog at http://marlenemacpherson.blogspot.com/.

Radiation

Jennifer took me for my radiation treatment this morning and it went well. Dr C said I’d be having 10 treatments to the rib but the nurse said I’m only scheduled for 5. Will find out more about that when I see the doctor this week.

I’ve had slight headaches and mild nausea for about a week, but I think that’s from the Decadron (steroid). The radiation nurse contacted my PDN (personal designated nurse) and I got a call this afternoon saying to stop the Decadron (yahoo!!!). I see the radiation oncologist on Thursday and the medical oncologist on Friday, so I’m hoping that between the 2 of them they can figure out why I’ve lost my voice.

In between all of these appointments, I’m hoping to make it out to a ‘rehearsal/trial run’ on Thursday for an upcoming canoe trip with a group of friends. I’m not sure if I’m up for paddling, but it’s been suggested that I could be the shuttle person between the camping sites along the way. That way I can still participate and camp with them at night. But, unless I get my voice back, I think I’ll have to skip the campfire sing-along. :-)

Frustration

I have been coughing for 6 months. What started at Christmas as a deep productive cough, is now a shallow wheezing cough that drains all of the energy out of me. I’m not coughing as often or as deep, but I think that’s because I just don’t have the strength. I’ve slowly lost my voice over the past few weeks and now can only manage a whisper.

I’ve been on 6 different prescriptions, including a puffer, anti-biotics and steroids. The Decadron is keeping me from sleeping and making me want to eat everything that doesn’t walk. I didn’t take it last night because I felt I needed the rest. I took a sleeping pill instead and managed to get a decent night’s sleep, although I still feel worn out this morning.

I’ve tried honey, Echinacea, off-the-shelf cold products, etc. I’ve eaten so many cough drops that I’m surprised I have any teeth left in my mouth. I’m a reasonably active person, but I now get winded going up stairs. I do 100 keegles every morning because spontaneous coughing can cause spontaneous leakage (ladies, you know what I’m talkin’ bout…!).

I’ve been told it’s a post-viral inflammation. Another doctor told me it’s a post-nasal drip. I had an x-ray a few weeks ago that showed nothing on my lungs. My last CT scan says: In basal segments of right lower lobe there is bronchial wall thickening & geographic areas of peribroncovascular groundglass opacity. May represent acute or chronic infectious process.

I’m feeling totally worn down by this. I start radiation today and dread making yet another appointment with my family doctor to try and figure this out. I wrote yesterday that I have no voice. I’m at the point where I don’t know who to tell anyway because no one seems to have a solution.

The leader of the New German Medicine retreat I attended lost her voice that weekend and said it was because of “unresolved fear issues”. My fear is that I’m going to croak (silently) from acute or chronic infectious process before the cancer ever gets me. I'm considering taking up smoking, just to speed up the process.

Voiceless

I’ve lost my voice.

I’m not sure why but, after 6 months of chronic coughing, I am so hoarse that I can barely speak. Maybe I just have nothing to say; I’m not sure what this means.

A neighbour of mine had a stroke over the winter and is struggling to find her words and express herself. I'm getting a small glimsp of what that must feel like because when I try to speak only a whisper comes out, so it's very hard to talk to people.

I was nervous about joining the Friday bike group yesterday but enjoyed a slow ride downtown. I seemed to be OK on the flats but get very out-of-breath on the up-hills and it seems to take me a long time to recover. I had planned to turn back when I had enough but the group decided to turn around with me. No one seemed to care that it cut their ride short because that’s just the kind of friends that I have.

I attended Meridy’s memorial service this morning. Several people spoke and told personal stories of Meridy’s life. I saw so many old Christopher friends there, but couldn’t really chat much because of my lost voice. There were well over 200 people there and it was a real tribute to the person she was. I wasn’t looking forward to going but I’m glad I did. Meridy planned the gathering herself and I know she would be happy that it brought together so many people who loved her.

Another medical appointment

I feel like I live at the General Hospital these days. I’ve been averaging about twice a week, but next week I’ll be there 5 times for radiation. Today it was for something unrelated to cancer: to get a cortisone shot for my carpel tunnel syndrome. I was there for 3 hours and had to leave ½ way through to move my car so I wouldn’t get a parking ticket. As I ‘expertly’ pulled into a new spot I realized that I’ve become very good at parallel parking since having cancer, because I seem to be parking on a side street near the hospital every few days.

What I’m grateful for today: That the cancer clinic seems to be much better at scheduling than the plastic surgeon who gave me the shot

Artist by Design

Liz Ciesluk's Artist by Design studio will be open every Saturday for the summer, offering unique one-of-a-kind gifts for everyone.

...so don't miss out!

244 A Britannia Rd.

Open 10 - 4

613-558-3103

Or visit www.lizziebiz.etsy.com

I don't usually 'advertise' on my blog. But Liz Ciesluk has been a great supporter; donating door prizes to our last Ammas to Grammas event, creating cards for Cards for Cancer day, and offering a workshop at a retreat for women with breast cancer. And besides, her art is fabulous!

Pictures from the LBBC conference

I just had a look at the LBBC (Living Beyond Breast Cancer) site and saw that I’m in a few of the pictures (in the centre of the larger one, sitting beside Sue from Calgary). In some pictures I have a mike in my hand, so I must have asked a question, but I can’t for the life of me remember what it was...

New tats

I went for my markings for radiation this morning and received 4 freckle-like tattoos so that the technician can target the treatments to my rib properly. My first appointment is next Monday and I will have 10 sessions.

What I’m grateful for today: Rain for my hostas