Past columns from Sue Hendler

I look forward to Sue Hendler’s column about her metastatic breast cancer journey in the Kingston Whig Standard every 2nd Friday. Today is the Friday in-between, so I thought I’d give you links to a few past columns. I will continue to post links to the new columns as they are published.

Stricken with chemo-envy: My cancer journey continues June 27, 2008
On my cancer journey, the writing is the easy part July 11, 2008
Getting used to the ‘new normal’ takes some time July 25, 2008
My quest for the holy grail of breast cancer treatment Aug 22, 2008
Sharing the ups and downs of my life with cancer June 13, 2008
On the cancer roller-coaster June 7, 2008

If you would like to read other columns by Sue Hendler, click on her name below after "Labels".

The Middle Place

A few people have sent me links to YouTube clips of Kelly Corrigan reading from her book “The Middle Place”. After viewing the videos, I think this will be the next book I read. You can watch the videos at the links below.

The Middle Place Trailer
Transcending: Words on Women and Strength
Going bald: Learning to live without hair

How many calories in vitamins?

I seem to take a ton of ‘stuff’ every day; everything from multi-vitamins to immune boosters. Here is a picture of what I take most days, although some of them (anti-nausea & steroids) were just around my chemo days and I'm hoping I won’t have to take them with the new treatment.

It is complicated to keep track of what I should be taking, and when. Some things need to be taken with food, others at least 20 minutes before or after eating. I keep my pills in a container from Dollarama that’s meant to organize hardware or sewing tools. It allows me easy access to my pills without having to open a ton of pill bottles. It makes travelling a bit easier too.

Some days I’ve had a hard time swallowing all of the pills and drops. The pills make me gag and the smell of the drops from my naturopath make me nauseous. I’ve learned to take my morning pills with oat bran; I bury a pill in a spoonful and swallow. I mix my drops up in the morning with the juice of a whole lemon, in a jug of water, and drink it during the day.

It seems like a lot but I’m doing well, so I’m reluctant to stop taking anything. My oncologist advised me to keep doing what I’m doing, so that’s what I plan to do. Even if I gag!

I Like My Eggs SunnySide Up

Eggstra, Eggstra read all about it!!!!! ....the new e-book by Heather Pardon....

On January 31st, Heather Pardon (Urban Poling Coach, owner of the Wild Daisy B&B, Personal Trainer, and a familiar face at Bushtukah), will be ‘hatching’ her new book “I Like My Eggs Sunnyside Up – One Dozen Tips for Cooking up Positivity in the Frying Pan of Life”. Heather is well known to those of us who took her survivor urban poling course last year.

For more information on Heather's book and how to order, go to I Like My Eggs SunnySide Up.

Political correctness for cancer patients

Julie Mason wrote an article in yesterday’s Citizen with the headline “I am not a ‘warrior’ in the ‘battle with’ cancer”, explaining why she’s not comfortable with the militaristic language of disease.

Julie writes: “The cancer bureaucracy loves to talk about Winning the War on Cancer or Conquering Cancer; it’s language that makes those of us with the disease into unwilling combatants or at least civilian casualties. Well-meaning folks also impose the language of conflict on us. I can’t count the number of times I’ve been told to “keep fighting,” or that I will “beat” it. Like so many people with cancer, I’ve been gratuitously assigned the hero language of “brave” or “strong”.

There seems to be a political correctness evolving regarding the terms we use about cancer. Is it any wonder that people worry about inadvertently saying the wrong thing and offending us?

I’m not sure where I sit in the wide range of opinions on this. On one hand, I have worked hard to alleviate stress, focusing on finding peace in my everyday life. I meditate (or at least I’m well intentioned). I surround myself with people who are gentle and funny. I try to spend time in nature, when I feel up to it.

But there is still a part of me that is a fighter. I’m not content to just light pink candles, hold hands with other cancer survivors and sing Coombya. I’m not necessarily “brave” or “strong”. The truth is that when faced with this disease, you don’t have a choice. You go forward because the alternative is to curl up in the fetal position and stay there. Then the cancer truly has beaten you and you do become a “casualty”.

Although I’m usually a peaceful person, I believe that rightly-directed aggression, can sometimes be good for the soul. Some days it just feels good to think of kicking cancer in the ass. Passively waiting for what comes next makes me feel too much like a victim. I like to think that I’m taking charge, considering what I can do to bring joy and meaning to my life.

I think I am a ‘peaceful warrior’; kicking butt some days and finding strength in peacefulness on others. I have no judgement about the words that others use regarding cancer. We all have unique experiences and we have the freedom to use whatever descriptions, emotions or language that gives us strength and hope.

Related reading:
Is Pink too Passive?
Gag me with a Pink Ribbon
The assertive Cancer patient: Living with cancer – and an attitude

When you get to the root of it, hair loss isn't all that bad, by Sue Hendler

Check out Sue Hendler’s latest column in the Kingston Whig Standard called “When you get to the root of it, hair loss isn't all bad”. You won’t get the benefit of the humorous picture from the column in the online version, so I am including it here. Sue told me that she's proudly wearing a 'Fuck Cancer' hat these days, and I think that's what she has on in the picture, although I suspect it's been strategically cropped for the newspaper.

This is what Sue Hendler usually looks like… with hair. Sue writes a column every second Friday in the Kingston Whig Standard about her metastatic breast cancer journey.

Previous columns by Sue can be found online at the links below.

The elephant in the room: Talking about cancer

My decision to take the first-best medicine
Can I trust that my test results are accurate?

It isn't just doping athletes who get 'roid rage

Spiking the holidays with my Festive Anti-cancer Cocktail

Living with the 'median': I hope time is on my side

If you would like to read other columns by Sue Hendler, click on her name below after "Labels".

Goodbye to Taxotere

I had my last Taxotere treatment today. When you finish chemo in the Ottawa Cancer Centre to get to ring a bell to celebrate and let everyone know it's your last one. Even though I’m not technically finished chemo, I am done with Taxotere (at least for now) and I’m not even sure that I’ll have to come to the chemo room next time. I think that the new drug will be administered in my oncologist’s office, but I have to check on that. So I asked the nurse if I could ring the bell and she said to go for it. Anka was with me and everyone applauded when I rang the bell. It felt great!

Good News!!!

Just home from seeing the oncologist and the news from the CT scan I had before Christmas is amazing. They cannot clearly see any cancer in my lungs on the scan. They only can see where the ‘remnants’ (my word) of the bigger tumors are by comparing the December scan to the previous scan.

Tomorrow will be my last Taxotere treatment and I will be switched to Fulvestrant, a less invasive drug that will be administered by intramuscular injection. The common side effects include loss of appetite. I say, bring it on! Maybe I can lose some of this Taxotere weight. Hair loss is NOT one of the side effects. Bonus!

According to my oncologist, my situation is not typical (I’m not one to follow the pack). Usually they expect to see the tumors shrink and then stabilize; they don’t often disappear completely. Keep in mind, this scan was from even before my last treatment. Both doctors seemed really happy with my progress. I said: “I wonder if it has anything to do with what I’ve been taking from my naturopath or the weird energy treatment I had in Nova Scotia”. The answer was: “No, it was the chemo”. I laughed and said: “Somehow I knew you were going to say that”. :-)

They cautioned me that, while this is great news, the cancer cells are still there. There is no cure. The aim is to treat it like a chronic illness and manage the symptoms. The cancer will eventually become immune to a particular drug. That’s why they don’t want to continue with the Taxotere; because I’ve done so well on it, they want to reserve it for possible use down the road when I may need it more.

I’m not looking too far ahead. I’m just happy about receiving great news. I asked about a possible trip to Holland to be with family and he said to go ahead and plan it.

Steriods and good news is a dangerous combination. I might sustain an injury from doing cartwheels in my living room. Life is good!

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.

Support Groups

When I was first diagnosed in 1998, I signed up to attend an 8-week support group without giving it much thought. Some of us decided to continue meeting after the formal group finished. Over the years we have evolved into something different; more like sisters than a support group. We refer to each other as our Bosom Buddies.

In 1999, I joined the Busting Out breast cancer survivor dragon boat team. I made lasting friendships on the team and there were lots of spin-off activities: a bc-survivor running clinic, a Saturday morning walking/running group, ski weekends, hiking, Nordic poling, snow shoeing, yoga classes, etc.

Over the years I’ve questioned the wisdom of forming such strong friendships with other women with breast cancer. While they are a great support and most have remained healthy since I met them, there are some who have not. A small number have died.

Carol was one of my Bosom Buddies. We were both single, our sons were the same age, and we became close friends. We joined the dragon boat team together. When her cancer returned I watched her live my worst nightmare. When she died in 2001, I was devastated and had pretty much made up my mind that I was done with the dragon boat team and anyone who had breast cancer.

I spoke at Carol’s funeral. Another Bosom Buddy played the harp. The first row on one side was reserved for Bosom Buddies. Several rows were reserved for dragon boaters. We shared stories of Carol and there was such a feeling of love for one another. I remember thinking that, while we will all lose people we care about in our lifetime, I couldn't imagine finding that level of support anywhere else.

Although Carol’s death was a terrible blow, I did continue dragon boating for several years. I have travelled with my breast cancer friends. We’ve shared birthdays and celebrations. We’ve supported one another through difficult times. We’ve laughed and cried together (thankfully there has been more laughter than tears). They’ve become like extended family, people that I can truly be myself with without judgement.

I can’t help but reflect on what my life might be like since my cancer returned if these women were not in my life today. I think I would feel very alone. Not that I don’t have caring family and friends who haven’t had cancer. But no one understands like my breast cancer friends. They pick me up when I’m down and get me out of the house. They know it’s OK to not know what to say when I get bad news. They know how to enjoy life and aren’t afraid to be ridiculously silly (I have pictures!). Most importantly, they make me laugh.

Would I recommend a support group to others? Cancer isn’t for wimps – and neither is attaching yourself to others who you may go through some difficult times with. But if I could do it all again, I wouldn’t change a thing. I thank the universe for my community of loving, courageous, funny, insightful and wise breast cancer sisters every day.

Here are some of the amazing women I call friends. Others can be found throughout this blog.

Advancedbc.org

If you are looking for information on metastatic breast cancer, the advancedbc.org website is a great resource. Also, there is now a group called Crazy Sexy Metastatic Breast Cancer Babes on the my.crazysexylife.com website.

An Update on the War on Cancer

An article in the National Post: An Update on the War on Cancer

I failed Intro to Juicing

There my juicer sits, on my counter, taunting me, making me feel guilty because I’m not reducing vast amounts of vegetables into highly concentrated nutrient rich juice – otherwise known as sludge.

The first time I used it, in true Chris style, I didn’t follow a recipe (mistake #1). I just threw in one or two of every vegetable I had in the fridge, including too many beets (mistake #2). The result was this thick red slime that resembled clotted blood, which I couldn’t bring myself to drink.

I was a bit more cautious with my second try, choosing a basic recipe with three ingredients from the juicer manual: carrot, apple and ginger. The color was better than my first try but I still had a problem with consistently. I ignored my gag reflexes and managed to drink the entire glass.

Then I was left with the clean up. The machine has lots of parts that get stained by juice and filled with vegetable pulp. The thrifty part of me couldn’t bring myself to toss out the massive amounts of pulp produced during the juicing, so I froze it, planning to use it in muffins or find some other use for it. (In other words, I’ll throw it out the next time I defrost my freezer.)

The juicer is still sitting there. If I was a knitter I would knit it a tea cozy type cover, because it’s starting to gather dust. Maybe on a day when the mood hits me I’ll give in another try. In the meantime, I think I’ll stick to carrot sticks and celery, the old fashioned way: raw and crunchy.

The Littlest House Guest

My friend Jen is dog sitting Zak while her cousin Mary (Zak’s mommy) is away. He’s staying with me for a few days to keep me company. I thought Zak would get me out of the house walking, but today is so bitter cold that we only did a quick walk around the block.

He’s very little trouble (although I must admit I haven’t embraced the whole scoop & poop thing yet). It’s nice to have Zak around so that I’m not just talking to myself. He almost always agrees with me and we even like the same TV shows.

Tribute to Yolaine

Peggy sent me this great picture of Yolaine dancing at the Vancouver dragon boat festival, along with some lovely words of rememberance.
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Yolaine embodied a warm spirit and had a quiet joie de vie that radiated from her smile. She was a quiet woman, not because she was shy, but because quiet was her nature.

It took me a little while to get to know Yolaine, and then I realized that Yolaine spoke her life, not through words, but by action. She didn't tell people that she was going to run the Half Marathon, she just did the training then ran the Half. But when complimented on her running success, she glowed with the joy of her own success and with the pleasure of people having noticed what she did.

Dragon boat was the same - she never complained; she just got to work and paddled her heart out. Even during the last few years, when she may not have been feeling her best, she would come to practice and smile radiantly, with the pleasure of being in the boat.

Quietly but passionately, she spoke about her children, about how much she loved them, about how proud she was of their accomplishments and how they each brought special gifts to her life.

Mostly, I remember Yolaine at the Vancouver Dragon boat festival in 2006. I can close my eyes and see her still - wrapped in her pink feather boa, and along with thousands of others, dancing in a frenzy of Pink Celebration. Her smile, her dancing, and her paddling spoke for her, telling her story of dedication to the things she loved.

Peg
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You can read the lovely words that Elaine Scarboro spoke at Yolaine's memorial service at Yolaine.

For those of you who knew Yolaine, please feel free to share a memory of her in the comments section. Add your name to the text portion if you want, but you can avoid having to log on by clicking on anonymous at the bottom of the window.

A lifeline for young women with breast cancer

A friend sent me a link to this article in the Globe and Mail about younger women (20s and 30s) with breast cancer. (Thanks Mary T.) http://www.theglobeandmail.com/servlet/story/RTGAM.20090112.wlcancer12/EmailBNStory/specialScienceandHealth/home

Living with the 'median'

Check out the Kingston Whig Standard newspaper for Sue Hendler’s ongoing column on her metastatic breast cancer journey. The columns are published every second Friday and topics vary from irreverently funny to somberly serious.

This past Friday’s column, entitled “Living with the ‘median’: I hope time is on my side”, definitely fits into the more serious category. Susan discusses survival statistics and reactions to those statistics from family and friends in a way that is both honest and hopeful.

If you would like to read other columns by Sue Hendler, click on her name below after "Labels".

Susan

My email connection with Susan started shortly after I read an essay called Simplicity and Silence that she wrote for CBC’s This I Believe project. I identified with her journey of finding meaning and peace amid the chaos and uncertainty of ongoing cancer treatments. Susan is an associate professor at Queen’s University in Kingston, so she was easy enough to track down and we started emailing back and forth about our experiences.
Susan was diagnosed in 2003 with sarcoma, a fairly rare cancer of the soft tissue and the bone, in her right leg. Despite a return of the cancer in the same place two years later, and the spread to the lungs and dangerously near the heart, she is doing well and back at work in the Philosophy department at Queens.

Susan writes:

My tool for living with this situation is meditation. I took a ten-day Vipassana course in March 2004 before my first chemo because I needed a tool to deal with the anger and resentment I had about being sick. I've practised meditation ever since. I've done five more ten-day courses to learn to focus my mind. My mind is all I have to respond to this ongoing situation. I am happy to see the beginning of 2009, something I did not expect one year ago. I do not think about 2010. I don't look forward or back and I live my life simply,

Peace and freedom are pursued through silence, at least in important part. Or so I now believe. I don’t mean just exterior silence, often experienced in agitation. I mean silence of the mind, which is freedom from endless mental conversations, rooted mostly in fear and self importance, and from unfounded and domineering expectations that undermine sensitivity to the here and now.

You can read Susan’s story in her own words at Susan. You can also read her essay, Simplicity and Silence, at This I Believe.

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

Brenda

Have you ever ‘kissed the cod’? Well I did, when a group of us enjoyed an evening of Newfie initiation at Brenda’s a few years ago. She prepared the most amazing assortment of Newfoundland dishes (including my favorite, Fish n’ Brews) and there were lots of belly laughs as we went through a series of initiation rights to become honorary Newfies.

Brenda’s down-home common-sense approach serves her well when it comes to dealing with life’s challenges. After her initial breast cancer diagnosis in 1997, she faced a recurrence in the same breast 2 years later, only to learn after mastectomy and chemo that there was another lump on her chest wall.

More than 10 years later, Brenda is spending weekends at her family’s chalet in Lac Ste Marie and is enjoying life. She is an example of someone who is fulling living today and looking forward to tomorrow.

Brenda’s advice for others:

First, give yourself time to grieve and do not feel guilty. If you do not grieve you cannot move on. You also need the time to absorb and sort it all through in your mind. People cannot do that for you. Tell well meaning people that you need some alone time to get used to the whole ordeal.

Secondly, do not get stuck in the grieving phase. Do not feel you have to continue grieving - move on to helping yourself. Do what you have to do to get your life back. Remember this is your life and if you are going to go through chemo and radiation again, it is because you want your life back. When you are unwell, rest and ask for help. When you are feeling better - live your life and continue to do for yourself. Think positively and live everyday as if it is your last (although it isn't).

You can read Brenda's story in her own words at Brenda. If you would like to read about other women living with cancer, click on "Cancer Heroes" below.

Who am I?

It’s easy to lose sight of who you really are when going through chemo treatments. On my good days I am a ‘cancer warrier', putting a brave face forward in the fight against this disease. On my bad days, I am a helpless cancer patient, a victim of my body’s betrayal. On the days in between, I’m just me, Chris, a mother, a daughter, a friend; a woman with many interests, hopes and dreams.

When I found out that I was facing chemo treatments at the end of last summer, I decided that I wanted a visual reminder of who I am – before I lost my hair and the effects of the treatments changed my physical appearance. I hired a photographer to take some pictures and we met at the gazebo on the Rockcliffe parkway, a common site for wedding pictures.



At first I felt a bit ridiculous, like a disoriented middle-aged woman posing as a bride. My discomfort eventually passed and I began to have fun with it, allowing myself to just enjoy the surroundings and feel happy, almost obilvious to the photographs being taken. The result was an assortment of pictures that represent a side of me that I want to hold on to – the healthy me.

No, I don’t look like a model in the pictures (although I could use some air brushing...). But I look like me: healthy, surrounded by sun and nature, and that puts a smile on my face.

When I look at the pictures I’m reminded that cancer doesn't define me, that it is only a very small part of the whole person that I am.