Monday, October 27, 2008

Marie-Andrée

When was your original diagnosis?
My original diagnosis was in 1999 - I had a lumpectomy, chemo and radiotherapy then and returned to work in January 2000.


When did the cancer return and how?
I found out the cancer had returned (a new tumor in the same breast) in August 2007. I had my yearly mammogram (very important) and from there it was pretty clear something was not right. The good news is there are no signs of metastasis anywhere. I had a masectomy and chemo between September 2007 and April 2008. I am now waiting for surgery to remove my ovaries; I am going through genetic testing (I might go for a prophylactic mastectomy once I have the results).

How did having the cancer return affect you? (Mentally, physically, emotionally)
At first, it was the proverbial hit in the stomach. I was totally panicked but a wise soul (you,Chris) told me that I would rise up to face the music. And I did. It has been really tough but has also had its glorious moments.

Mentally (and physically): Somedays, I feel a bit broken because that second round of chemo and the Femara (hormonal drug) have given me aches and pains I did not have before. I hope these will settle down as time goes on. I had a wonderful summer vacation and I enjoy so much the people around me...it is all about friends and family. I am blessed with an optimistic personality and that has been handy...Intellectually: multitasking is out. I can't tackle a lot at once. Which is quite likely a good thing.

What changes have you made in your life since the cancer returned, if any?
I have slowed down a lot. The thing I absolutely love is not being in a hurry. I purposely walk and drive slowly and I don't wait until I have 54 errands to run to go out. I love not having to run through the grocery store at 7:00 p.m. on Sunday nights!!! If one day I don't "accomplish" much, well it is just fine. I love being at home so I am not sure when I will go back to work.

I have started reading a lot again. When I am in a book, my husband and son know that my ears do not work anymore. I was like that as a teenager...

Since early September, I have started exercising regularly. BCA offers a wide rage of fitness classes and soon will offer yoga. I go to the morning sessions at the Rideau Tennis Club 2-3 mornings a week. I have started Saturday morning nordic walking (and breakfast) again and I walk my dog Tina as many afternoons as possible with a good friend. So fitness and eating well is what I will do for a living this Fall - and forever. I hope to be well enough to paddle next year.

Where do you draw your strength from? How do you look at life today?
My strength is my small and big families: my husband and 12 year old son; my parents, brother, sister, niece and nephew; my parents in-law and my brother and sister-in-law who live close-by and have kept us going, cooked for us...Another huge part of my support network has been my colleagues - this is an absolutely amazing story: once we found out that I was going to go through chemo again (last Fall), about 50 of my colleagues got together and created my very own Fan Club. They divided themselves into 6 groups (for 6 cycles of chemo) and before every treatment sent care packages full of food, books music, chocolate, knitted shawls, hats., etc. My husband often had to go back to the car two or three times to bring in the boxes of stuff.....if was amazing, overwhelming and one of the most wonderful compliment I have ever had.The neighbours, hockey parents, my son's friends and their parents, my old friends from school - all have been my strengh. Every card, letter, e-mail, gift arrived exactly when I needed it. As if there was a cosmic dispatcher who was coordinating all of this...The Dragon Boat team has also been a great source of inspiration because of my teammates courage, tenacity, sense of humour and kindness, I turned to some of them in the few days after finding out I had another battle on my hands - they know. I wore my team shirt to every treatment - I had 60+ women paddling with me throughout...How do I look at life today? Some days with fear but most days with hope and a very deliberate attempt at making every moment count big time. Watching our son grow and play and become a fine young man is what I want to keep on doing for a very long time.

Anything else to add?
Thanks Chris for your fantastic blog...I truly admire your courage, openness and generosity.

Saturday, October 11, 2008

Talking Turkey - by Mary O'Rourke

With apologies to the the author if some of the punctuation didn't translate properly across our versions of Word...

The turkey, as you know is a bird. A North American bird if I'm not mistaken. Which seems to be what my mother had against it.

I'm not talking abut the jolly gold and red cardboard birds that show up in department store windows every fall, or even the smaller orange and brown table-top ones with that kind of webbed paper center. I'm talking about the real thing, the actual bird - or more precisely the dead bird, which traditionally graces North American dinner tables at least once and, more often, twice in fall and winter, at Thanksgiving and Christmas.

A Britisher from the gritty industrial North, Mum could not see the point of turkey and she never let us forget it as long as she lived - all 89 years. Celebratory turkey was unheard of in Britain in her time. With charming Lancashire bluntness she'd ask, "Why do you want that dry old tasteless thing when you could have a lovely goose or roast beef and drippings?" Channel Coronation Street and you get the idea.

I'm not sure my mum was ever a good cook, even before living through rationing and World War Two. The few times she did try to get with the program and cook Canadian, the turkey was definitely less than succulent. And just thinking about the leftovers seemed to bring on a nervous breakdown, not to mention the same boring annual recitation about what a trial it was. Clearly, Mum's reserve of festive cheer didn't run to cheerily skinning and gutting the carcass and whipping it into a delightful potage.

And there was no pumpkin pie at our house either. Mum was convinced my older sister had caught food poisoning from it at a neighbour kid's Halloween party. "Ooh, imagine eating vegetable marrow with sugar and spice and things. No wonder her tummy was all funny."

This was pretty rich coming from someone whose idea of good nutrition was 'mince', or ground hamburger meat stewed in a watery gravy of onions and potatoes. Spam sandwiches with Kraft salad cream were a regular lunchbox delight, long before Monty Python got onto the spam shtick. But then the Brits have never been renowned for their irresistible cuisine.

"Enough with the turkey talk, already" we said as we got older. "Cook whatever you want and we'll eat it." By the seventies, roast beef was getting to be a bit of a luxury, not the regular Sunday dinner we'd all grown up on. And we were bringing wine to grease the wheels or drown the taste, if necessary.

One sister married a Brit who grew up with roast beef Christmases, so he didn't expect turkey. A second sister moved to Ireland. And a third sister (me) stayed home. She didn't go to market, although she did develop a taste for a nice turkey dinner, without ever feeling the particular urge to master it herself. Until her Canadian husband the traditionalist started to insist, that is. By now Mum had moved to my city and was living in a nearby senior's residence.

Thanks to divine intervention and the web, a Thanksgiving miracle occurred in my humble home in 1999, just a month before she died. I'd found an online recipe for a turkey basted liberally with a mixture of soy sauce, apple juice and a few seasoning. We had all the usual trimmings, fluffy mashed potatoes, cranberry-orange relish, broccoli and even Brussels sprouts for my anglophile sister. Grandma not only enjoyed the turkey, she asked for seconds!

But she was still on turkey patrol in daily life. A few weeks later at her residence, we attended a 'care conference', an opportunity for frank dialogue between residents and staff. "How's the food, Mrs. Smith?" asked the nice young woman in social-worker speak. "Do you have any concerns you want to share with us?" Mum shook her head to indicate no. (Actually, I know she was thinking, why don't they teach you to speak plain bloody English in those fancy universities of yours, but I digress.)

"That's not what you told me", I nudged her. "Why don't you share?"

"Well, I did wonder if you had shares in a turkey farm" she replied, alluding delicately to the frequency with which turkey appeared on the residence menu. Sadly, nobody laughed.

Humour is what got the Brits through the war, in spite of all those soggy Brussels sprouts. Too bad humour isn't on the curriculum for all those earnest social workers and geriatric carers.

Monday, August 25, 2008

Wisdom from Patricia

Over the past 10 years, members of our support group have continued to struggle with issues related to cancer, including recurrence. Patricia has not been exempt from those struggles. In 2001, while studying Music Thanatology (prescriptive harp music as palliative care for the dying) in Missoula, Montana, she had a local recurrence and underwent a mastectomy. Now living in Victoria, she has had another recurrence, this time in her axilla (armpit).

A few of the many things that Patricia has taught me:

Find your own way to focus on what’s important. For Patricia, that includes yoga, the practice of Chi Gong and spending time at an ashram. What works for one person may not work for another. Walk in nature; sit on a hillside overlooking the ocean; explore alternative ways of caring for your mind, body and spirit.

Trust your body’s wisdom. Patricia teaches Dream Yoga, which involves using guidance from your dreams to develop a spiritual path. Sometimes friends and family can have an idea of what we should do, but we need to trust our own instincts and be clear on what we want so others can support us.

Life is precious. ‘Live for the moment’ has been said so many times that it sounds cliché. While all humans have the same condition – we are all going to die eventually - few of us live each day with that knowledge as our guide. Having cancer challenges us to live life NOW. We have to straddle the chasm between knowing that we have cancer and getting on with life. This awareness sharpens our sense of living; our relationships with children, friends, family become sharp, brilliant and precious.

Don’t make decisions based on fear. Fear is natural when dealing with cancer; doctors use words like ‘recurrence’ and ‘metastatic’ and ‘palliative’. Information on the internet can be terrifying. Keeping the fear hidden inside can magnify it. Patricia’s openness about her fears has taught me to deal with what I refer to as ‘the dark side’ and find space that’s not fearful that I can make decisions from.

The war on cancer doesn’t always have to be violent. Patricia pointed out to me that, even though we use the term ‘fight fire with fire’, we actually use water to fight fire, and use fire only as last resort. As an example, my friend Mary has found a way to peacefully live in the same body with the tumors in her lungs.

Patricia recently lost her beloved dog Kelly to cancer and continues to search for meaning in grief, loss and life. I hope to spend a week at an ashram in southeastern BC with Patricia this fall, where I know I will continue to learn so much from my ‘bosom buddy’ Patricia.


Namaste means:
I honor the place in you where the entire universe resides.
I honor the place in you of Love of Light of Truth of Peace.
I honor the place within you
where if you are in that place in you and I am in that place in me,
There is only one of us.

Namaste Patricia

Sunday, May 18, 2008

Yolaine

When was your original diagnosis?

My original diagnosis was July 2000

When did the cancer return and how?

My cancer return August 2005 after a complete routine test ordered after 5 years. An ultra sound of the abdomen revealed 3 lesions on the liver.

How did having the cancer return affect you? (Mentally, physically, emotionally)

The first year of treatment did not go very well. I have some complications. I started on the clinical trial and I lost 30 pounds the first 3 months. Then I was scheduled for insertion of portho-cath. Unfortunately, the vascular surgeon perforated my lung. I was sent to the emergency a week after the surgery for a pneumothorax intervention. This was done after chemotherapy. The sad part is the pneumothorax intervention was not done in operation room (under sterile technic). I ended up having a systemic infection and was hospitalized for 5 days. They thought I might have my chemotherapy drugs injected in my lungs due to perforation and added a potential brain tumor due to the large size of my head. Luckily no brain tumor but it was a heck of difficult time. My husband thought that I would not make it for Christmas. They stopped chemo and started Femora. Sadly on December 31 the doctor informed me that my lesions had doubled in size and Femora was stopped. I started on Xeloda for 1 year with neuropathy in my feet and hands. They could not flush my portho-cath and I ended in emergency for removal of the portho-cath with a severe risk of a potential stroke because a large clot from the portho-cath has travel to my jugular. As you could see, this was a very difficult time.

What changes have you made in your life since the cancer returned, if any?

After the first year I decided to read a lot on different type of body mind therapies. As before I was doing visualization twice daily. After an extensive reading on meditation I started on transcendental meditation and other eastern holistic therapy. I included heart healing meditation, self massage and continued to stay active physically by walking 40 to 60 km per week plus free weight training and a core training and yoga daily. I kept myself spiritually as well by meditating in a chapel one hour weekly. I started to evaluate my own journey by giving that special time for reflecting on my personal and professional life. I discovered more aspect about myself and feel grateful to the cancer to give the chance to discover myself in a way I never did before. This was the very important part. Accepting this challenge as a gift as curious as it sounds.

Where do you draw your strength from? How do you look at life today?

I draw my strength from my family and my friends. Keeping fit and stay positive. Life is a journey. Every step is important even the difficult one.

Do you have any advice for others with a recurrence?

My advice will be getting involved in decision making and put you first. Keep yourself active and have a good laugh. Surround yourself with positive people and appreciate every day.

Anything else to add?

Keep in contact with people and take one day at the time.


Sunday, April 27, 2008

Judy

When was your original diagnosis? When did the cancer return and how?

Original diagnosis 1993. Lumpectomy chemo radiation. Four years later a routine exam uncovered a thickening in the same breast, which turned out to be 2 tumors of a different sort than the first. After another 4 years a little lump on my chest wall turned out to be another tumor. Four years from that diagnosis I held my breath for almost the entire year.

How did having the cancer return affect you? (Mentally, physically, emotionally)

Having had no personal experience with cancer of any sort i was floored by the diagnosis. At first it was all about the kids. They were young (11 and 14) and I felt guilty about putting them in such a position. I didn't have much support so floundered for quite some time in an almost surreal state of terror. The first few months were like a nightmare. Then, as with anything, you adjust and begin to work with your new reality.

With the last 2 recurrences the freak out times were shorter and the transition to positive, constructive behaviors was much smoother. Practice makes perfect.

What changes have you made in your life since the cancer returned, if any?

After the first diagnosis I swore off meat, wine, coffee, sugar, dairy products etc, etc. When the cancer returned I tried even harder. The third time I kind of reconsidered and decided a beer and a hamburger may be good for my soul if not my body.

Since the beginning I have been jumping on and off bandwagons. I tried acupuncture, Chinese herbs, reiki, vitamin supplements, visualization, relaxation, psychotherapy, homeopathy etc. It's interesting, enlightening and gives a sense of control. The best bandwagon ever is physical fitness. This has changed my life on so many levels. I think it has been my salvation.

I had a bucket list long before Jack Nicholson. At first it was pretty basic - watch my kids grow up, see Newfoundland. It has evolved into something that will take a very long time to complete. It also now includes physical challenges for myself that I wouldn't have even considered BC. As I check off items I had new ones at the end. This is a never-ending list.

Where do you draw your strength from? How do you look at life today?

I think my strength comes from within. But it's the influence of the strong, positive, supportive friends that surround me that has made me realize that the strength is indeed there. I don't think I knew that before.

Do you have any advice for others with a recurrence?

The most helpful thing you can do for yourself is seek the company of others in the same boat who are living life to the fullest. Surround yourself with positive energy and enjoy each day. And never say "no" to an adventure.

Anything else to add?

I look at life as a gift-full of surprises and opportunities. I feel stronger and more confident. Seldom will I refuse the offer of an adventure. In the past few years I've run a half marathon, ripped down zip lines, skied in shorts, skinny dipped, etc. Sometimes in the midst of one of these adventures, surrounded by kindred spirits and the beauty of nature I am overcome by a feeling of utter peace. In these moments I realize that I have found heaven on earth. This is the silver lining.

Tuesday, April 15, 2008

Alice

My original diagnosis of breast cancer was in January 2002 and it was caught through a mammogram and a physical check. It was a small lump, lobular invasive but I was fortunate in that there was no lymph node involvement. I had a lumpectomy in February and radiation in April. In March I went to the Dominican Republic for a week with my husband and daughter and in May I went to Greece and Turkey for 3 weeks. It was very successful. Dr. Mark Hardy was my surgeon and Dr. Keller my oncologist. I took tamoxifen for 5 years and saw each doctor once a year. I finished my tamoxifen in the summer of 2007 and was put on Evista. In September-October 2007 I started dragonboating in 2005 and I was fortunate to be part of the group going to the International Festival in Australia in 2007.

In December 2007 I started noticing changes in my right breast, the same one that the cancer was in in 2002. It was shrinking and lumpy. Since my mammogram was scheduled for January 2008 I waited for that. After that I had an ultrasound and an MRI and the MRI showed a lesion in the right breast and probably cancer in the bones. After a biopsy and a bone scan, my oncologist sent me to a new surgeon Dr Chadwick as Dr Hardy had left Ottawa . Dr Chadwick was sure it was a recurring cancer and wanted the bones treated first before he would think of doing surgery. So back to the oncologist who did a CT scan and the decision was to treat with chemo. Dr Keller believes it is a new primary although it is in the same breast and lobular invasive. I started chemo March 14 and have now had 2 sessions, will be finished June 27.

The cancer return was a shock initially but it was more the fact that it was Stage 4 metastatic. The binder I was given at the Breast Health Centre had the same stories as six years ago and there was only one on Stage 4 and it was very depressing. I read up a bit but decided I had to stay positive and not read too much and just get treated and be hopeful and get support from others on the dragonboat team I knew were going through this stage. The other negative thing was the way the oncologist handled it. He was very kind but he left a message on my phone at work and it was frightening. I was also not happy with the way the surgeon handled our meeting. He was rushed and impatient and the news was very surprising as it was much more definite than what I had been told by the oncologist. The only time I have cried though is at the surgeon”s and that night when I tried to tell my choir. It was still so fresh in my mind. Physically I am doing very well. Even the hair loss was not too big a shock as I figure it will grow back and in the scheme of things it is not such a big deal. I have a wig that looks good and I am actually quite comfortable without it as well. Emotionally I am coping very well as I have a tremendous amount of support and feel physically well most of the time except for a few days when I am more tired. I am trying to pace myself a bit more.

The changes I have made to my life are to concentrate on getting well more thus I am working less in my job, hardly working at all at home as I have the support, pacing myself with more rest, drinking much less wine , drinking a lot more water and ensuring I get my exercise.

I draw my strength from all the support I have, my husband, my family, my dragonbaot team, my walking group, other friends, my church and choir, my neighbours, my bookclub and so may friends in and out of town who send me emails and cards and flowers and phone me. I also love to read and to listen to music and watch some of my TV shows.

I look at life today with hope and joy at being alive, feeling good physically, being able to go for long walks, continuing my paddling, looking forward to the paddling outside and the festivals and the summer which is my favorite season. I have always been a positive person and love to help others and I am getting all of that back now through all the support. This is also true of my work situation where I have been very supported even though I have not been there long.

My advice to others with a recurrence is to stay positive, have someone with you when you see the medical professionals, don”t read too much that is negative, stay as healthy as you can, accept support from others, don”t work too hard and be good to yourself. Enjoy each day and don”t think too far ahead.

Alice