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!

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.

Elizabeth Edwards talks with Larry King about her cancer

Nicole Bruinsma

I came across this sign on a trail in Chelsea last week. (It's in French and English but there's a glare on the French side of my picture - apologies to my Francophone friends).

Nicole Bruinsma was one of the original members of the Busting Out dragon boat team. I didn't get to know her well but I remember thinking that she must have been well loved in Chelsea. The town really rallied around her when she was ill and even organized a fund raiser to help pay for some expensive treatment she had in Germany.

Nicole was one of so many Busting Out paddlers that have made a difference in their community.

Philadelphia

I am sitting in a hotel in Philadelphia, happy to have internet access once again. (If there’s not a support group for this addiction, there should be).

I just spent the weekend at the LBBC (Living Beyond Breast Cancer) Conference for Women with Advanced Breast Cancer. The speakers were informative, the breakout sessions were interesting, and the food was tasty and plentiful.

But the best part of the conference were the attendees themselves. About 200 women attended, some young and some not so young, some bald, some wearing wigs, some looking amazingly healthy, some struggling with symptoms and/or treatment side effects; everyone looking for information, for advice, for answers, for hope.

I attended a session this morning called Creative Coping: Healing through Writing. The facilitator had us do several exercises where we wrote free-style for 5 minutes. As some of the women shared what they wrote, you could feel the connection in the room. We didn’t know each other, but we didn’t need to; no judgement, no need to explain. It felt like a weight lifted to be with people who understood.

Here are a few random lines that I made note of because they moved me.

I’ve come back. Again and again, I’ve come back.

We huddled together, my sister and I, knowing that I am going to die.

Because I have a season…

One of the exercises we did was to look at a picture of a flower and write whatever comes to mind. I chose a poppy and here’s what I wrote. I’m no poet (and keep in mind that we had 5 minutes to write, without thinking about it!), but here it is, for what it’s worth.

Poppies remind me of Theresa.

Theresa, painter of poppies,

mother of young daughters,
friend to her bosom buddies.
Theresa, feisty, determined, opinionated, concerned, talented, bold, loved.

I carry Theresa and the other women that have gone from my life, not as a burden,
but as internal companions; reassurance that I can follow on their path and that my family will be OK and carry on.

Theresa, Carol, Sue.
These sisters of my heart will always be part of me,
And their examples continue to guide me on my journey.
I feel their love and strength as I carry them with appreciation for all they brought into my life.

What I'm grateful for today: That I am not alone.

The prodigal son returns in: 7 days

Joanne's hair-raising fundraiser

When her cancer returned and she had to have more chemo, my friend Joanne came up with a creative way to raise money for the Busting Out dragon boat team. She asked people at the Canadian Martyrs Church to sponsor her to attend a service 'unadorned'. Yup, that's right: no wig, no hat. Brittney Spears crazy-phase bald.

She even got up and made an announcement during the service so, not only did she raise $705, she didn't have to explain to everyone individually at her church that her cancer was back. Sometimes telling your story over and over again can be exhausting.

Talk about turning a negative into a positive. Joanne, you rock!

Surprise for Mary - Plan C

We’ve been missing our friend Mary at the Saturday morning walking/running group. She’s been in the hospital and, while she hasn’t been feeling well enough for visitors, we’ve all been desperately wanting to see her.

Plan A was to meet in the hospital parking lot this morning and get someone to bring her to a window so we could all wave to her. When we found out yesterday that she had a weekend pass to go home (for good behavior?), we moved on to plan B.

Plan B was to wait in the park across the street and have Eric bring her over on the way to the car when she was released. Getting her ‘sprung’ (waiting for the doctor to see her) ended up taking longer than anticipated, so it was decided that the trek across Smyth in a wheelchair would be too tiring after the wait. So… we moved on to plan C.

We were determined! And Plan C worked!

Mary’s sister Frances (who just arrived from Ireland yesterday) waited at the front door of the hospital with Mary while Eric went to get the car. Then they both distracted her while the group of us walked over to the entrance, signs and all, and surprised her.

I hope Mary was as pleased as we were to see her. We sent her off with Eric and Frances for some well needed rest after all the excitement (or should I say ambush?).

Mary: You are such a good friend to all of us and we wanted to do something to let you know that we love you. I know I’ve said this before, but it’s worth repeating. You are a wonderful blend of classy lady and tough broad. I'm honored to call you my friend. xo

Achieving Milestones When Living with Metastatic Breast Cancer

In this spring's Living Beyond Breast Cancer newsletter, Jill Cohen writes about Achieving Milestones When Living with Metastatic Breast Cancer. I can relate when she says: 
 
When you’re diagnosed with cancer, you get on the cancer roller coaster. You go up and down for a while, and then you get off. But when your diagnosis is metastatic cancer, your life is more like being on a merry-go-round. Sometimes you go up and down on the ponies and sometimes you get to relax on the bench, but you never get off. That’s my life.
 
Read the full article at:
http://www.lbbc.org/data/newsletter/LBBCspring10insightsonmets.pdf

Daria at Living with Cancer always finds and posts the best videos. So, being the resourceful type, I steal her video links. :) (Thanks Daria!).

Here's a video of Kris Carr with some Crazy Sexy Cancer tips.

Death Can Wait

“Facts and details about cancer in its many forms are readily available. What is not that available is true, unvarnished insight into what goes on behind the scenes, behind the outer facade. What goes through peoples' minds when they get the shattering news? What feelings and emotions do they wrestle with as they cling onto life? What attitudes are helpful, what attitudes are destructive? This is a book that addresses these issues.” – Amazon.ca
“Death Can Wait” is a book full of survivor stories, including those written by Alice McClymont, Barbara MacIntosh, Cheryl Kardish-Levitan and local newscaster Max Keeping. All profits from the sale of this book support cancer research, with a goal of raising $1 million. You can order it through Amazon at the link above.

What I’m grateful for today: That I am able to stay indoors today and don’t have to go out and brave the storm that is brewing outside my window.

Not Done Yet - Alice's review

Some time ago a group of us attended a book launch of Laurie Kingston’s “Not Done Yet”. Alice kindly offered to write a review of the book. (Thanks Alice!).

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Not Done Yet: Living through breast cancer by Laurie Kingston 2009
Review by Alice McClymont

Laurie Kingston was 38 with an active life, a family and a demanding job when she was diagnosed with breast cancer in December 2005. In November 2006 she learned that the cancer had spread to her liver. Her book “Not Done Yet” published in 2009 by Women’s Press Toronto is a very personal journal of her diagnosis and treatment, written with the utmost honesty, wit, insight and feeling. What makes the book unusual is that it is in the form of a blog with various lengths of entries and that it is a positive, witty and inspiring book in spite of the severity of the topic. Reading this book is like reading someone’s personal journal which involves the reader in the day to day life of Laurie, her very supportive spouse Tim and her two sons. Especially touching are the entries about her sons Sacha and Daniel and, as children often do, they provide some light moments in the midst of difficult times. For example when the boys are playing “pirate treasure” they find Laurie’s prosthesis in a box and ask what that pinkish. squishy thing is. When Laurie replies that it is something to make her look the same on both sides her sons retort with “ Cool”, taking it all in stride.

The book is very informative about various procedures such as bone scans, chemotherapy, ultrasounds and radiation and gives an honest account of both positive and negative communication with various health professionals. It is chilling to read about the kinds of comments that can be made by those who should know better like the medical student who referred to her portacath as a “lump” and the radiation oncologist who, when told the area radiated was still too tender for a prosthesis said ”Well, you have to wear something in public”, this the same doctor who objected to her having a different surname than that of her spouse.

The book will be of interest to different people for different reasons. To other cancer patients or survivors, the book shows how someone with a difficult prognosis can have a superlative outcome and the ups and downs of getting there. To the medical professionals, there are many hints about the importance of treating the patient with care and respect and being very careful of what one says. It is always better to look at the glass as half full no matter the prognosis. To relatives and friends of a cancer patient, the book clearly shows the importance of small gestures and kindness. As one of Laurie’s cards says “Between me and insanity stand my friends”.

As a breast cancer survivor with metastasis I particularly related to this book. I am much older than Laurie but relate so well to her love of reading and how getting into a good book can take your mind off the cancer, and like Laurie I believe a glass of wine can cure many ills. I also relate to Laurie’s wanting to write about her experience, both as therapy and to provide information to others who need positive stories. No one would choose to have cancer but as Laurie says “ my life with cancer is infinitely better than I would have thought possible”.

Laurie's blog: Not Just About Cancer

Read about Alice's journey

Never give up hope, by Laurie Kingston

October is Breast Cancer Awareness month. Laurie Kingston, author of “Not Done Yet”, tells her story. This is the advice she wished she had when diagnosed.

Read the article
Laurie's blog

Cheryl Kardish-Levitan on 'A' Channel - Sept 25

Set your VCR/PVRs!

Cheryl Kardish-Levitan, one of our Just Doing It team members who has now raised more than $110,000 for the Run for the Cure over the years, will be on A Channel tomorrow at 9.15 am.

If you can watch please do so and support her from afar.

Congratulations Cheryl!!!!

Cottage dreams

I’m just back from a week of eating, drinking, swimming, napping, socializing and relaxing at a beautiful cottage in Minden Ontario. (Notice I put eating and drinking first?).
The week was arranged through a cancer recovery initiative called Cottage Dreams, which offers recent cancer survivors the opportunity to reflect upon and celebrate recovery in a positive and relaxing setting.

After showing us around on our first day and making us feel very comfortable, our very generous hosts, Jim & Victoria, left us to enjoy their beautiful cottage for the week. The 5-bedroom cottage overlooks a picturesque lake and was the perfect place to relax and enjoy the company of my mom and some ‘extended family members’.

Mom & Mary & I were there for the full time, with visitors coming in two groups. Jennifer, Frances & Joanne left because of other commitments after the first few days. Unfortunately they missed the best weather days but I think they had fun anyway. Dianne, Anne & Sylvia came later in the week and enjoyed the warm and sunny weather.

So, in total, 8 cancer survivors were able to benefit from the donation the owners made. We were all amazed at their generosity and trust in handing over their lovely cottage to a group of strangers. I guess we didn’t look like the types to go all ‘rock star’ and trash the place. :-)

This was definitely a positive experience for me and I would recommend it to both cancer survivors and cottage owners. I was glad to see the recent addition of fall cottage visits on the Dream Cottages site. Unfortunately the deadline for applying was July 13th and has now passed.

Cottage Dreams

Calling all Cancer Heroes

I am always looking for positive stories about people who have had a recurrence (local or metastatic) to post to this blog. I call the subject of these posts “Cancer heroes", because anyone who is a role model of how to live a full life with cancer is my hero!

If you have had a recurrence of cancer and are living your life with meaning and purpose, I would like to add you to my list of cancer heroes. If you are willing, please send me your answers to the questions below, along with a picture or two that I can post to the blog.

I may not use all of your comments (I like to keep my posts rather short), but will put together something that will hopefully capture the spirit of your story.

Thanks!
Chris
christine.lynds@rogers.com
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Questions:
When was your original diagnosis?
When did the cancer return and how?
How did having the cancer return affect you? (Mentally, physically, emotionally)
What changes have you made in your life since the cancer returned, if any?
Where do you draw your strength from? How do you look at life today?
Do you have any advice for others with a recurrence?
Anything else to add?

Read Cancer Hero stories

Jennifer: Cancer hero

Jennifer was diagnosed with breast cancer at the age of 28. Despite a recurrence in her bones, lungs and liver 3 years later, she hasn't let cancer keep her from doing the things she loves, or from trying new things.

“I have done more things in my life in the last 3 years then I did for the first 28 years. I have experienced life and done things that I always wanted to try. Some of the things I tried were photography, kayaking, cross-country skiing, rock climbing, hiking, snorkeling, singing, swing, Latin and ballroom dancing. I received my Reiki master, scuba diving certification, directed 2 plays, and I'm working toward my black belt in Kenpo (martial art). I have traveled more and have been to Ireland, Scotland, England, Wales, and Paris among my favorites. I also returned to school for something I have wanted to do almost my whole life.”

Jennifer’s advice for others:
“You made it through the first time so that means you have the strength and determination to make it through again. Take one day at a time and still continue to live your life. Don't let this run your life, take control.”

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"Cancer Heroes" are people with cancer who are continuing to live life in a way that inspires others.

Read Jennifer’s full story, in her own words

Read about other Cancer Heroes

Bosom Buddies

I met my 'bosom buddies' in a support group in 1998. Unfortunately, all but one of us has had a recurrence of some sort - either local or metastatic. Our friendship has not only been a support to me, they have become like sisters, part of an extended family.

Patricia was visiting from Victoria last week and four of us got together for lunch.


In the picture: Beverly, Mary Lou, Patricia and Chris

Missing from the picture: Jill

Stories of Trials, Perseverance and Hope

Surprise, surprise. I’m not the only woman living with advanced cancer that has a blog. :-)

When I read what others write online, I often want to link to videos or other websites that they reference. In the interest of sharing information (not just stealing other people’s links!) here is a video I found on Laurie K’s blog, featuring women living with metastatic breast cancer.

Metastatic Breast Cancer: Stories of Trials, Perseverance, and Hope
Laurie’s Blog

Not Just About Cancer

I knew about Laurie Kingston’s book launch on May 7th, but didn’t realize that the content from the book comes from her blog Not Just About Cancer. I wonder if there are others out there in Ottawa with advanced breast cancer that are bloggers...

Earlier this year Laurie went to Dallas to attend a Conference for Young Women Affected By Breast Cancer. In one of her posts called Living With It, she lists some of the comments that resonated with her from the conference sessions she attended.

Because some of the items on her list also resonated with me, I thought I’d comment on the comments she noted (if that makes sense).

• It's hard to explain to people that we will never be "done with treatment." I agree, this can be hard for others to understand. They ask me how many treatments I’ll have and when I’ll be finished. The reality is that I’ll probably be on some sort of treatment for the rest of my life and there is no way to predict how long each one will last. After an undetermined period of time the cancer will start to become immune to a particular drug. When that happens, you move on to another drug and start the process again.
  


• "Coping is temporary. Adapting is permanent." I think this is what Sue Hendler wrote about in her column, Getting used to the 'new normal' takes some time. You have to learn to adapt to the new normal and continue on with your life as best you can.
  


• Talking about our cancer "takes the power out of it. It's like deflating a balloon." For me, as an introvert, talking with the right people is good; writing about it is even better. (See Bloggin' is good for the Noggin).
  


• Strike a balance between hope and acceptance - "hopeful acceptance." I really like this term – hopeful acceptance. I’m not in denial, but I’m open to the possibilities that every day brings my way.

Meridy

After going through chemo treatments for breast cancer for most of the first half of 2008, Meridy thought that she was “done”. I hadn’t seen her for several years and when we reconnected, she had finished chemo and was looking forward to putting the whole cancer thing behind her.

Unfortunately, that wasn’t to be. Soon after completing her initial treatments she found out that the cancer had spread to her liver and that she has to face yet more treatments.

Always practical and positive, Meridy is taking control of what she can. She says she has a one month plan, a one year plan and a five year plan. “I try to stay very focused on the next goal - a trip to Florida in February, a trip to Italy in September.”

To the left is a picture of Meridy's 'new hair' that is growing in since her original chemo.

She writes:
I get my strength from my friends and the goodness that people display, especially those who have been on this journey.

Her advice to others:
Read Bernie Siegel's books. Know that cancer has become a chronic disease, and patients can be treated for years, thus buying time for a cure, or better/kinder treatment options and procedures. Be kind to yourself, do not repress emotions - find an outlet (counselling, support group). Do not give up hope.

You can read Meridy’s story in her own words at Meridy.

If you would like to read about other women living with cancer, click on "Cancer Heroes" below.