Be-Attitudes

The Beatitudes are defined as the 8 blessings made by Christ during his "Sermon on the Mount".  They are the rules of appropriate behaviour which supposedly gain you entrance into heaven.  They all begin "Blessed are..." and then are followed with an instruction. 

The Beatitudes are a good guideline, but how about coupling them with the The Be-Attitudes - forgetting all that business about peacemakers, the meek and the mild?  The Be-Attitudes should read much like the Declaration of Independence and be an automatic entitlement to all cancer patients, their family and friends, giving them the right to rant and rave in the face of so many failures - failure to detect, failure to treat, failure to cure. 

There were two new posts on Inspire.com this week from family members who are trying to cope with a relative dying from ovarian cancer.  It isn't pretty - it isn't a Disney scene - it's how we pass.  Be-Attitude.  Don't try to cope.  It's OK to rail against sporadic disease and it's more than OK to cry.  Be-Attitude.  Bravery is often a cheap facade masquerading fear - it isn't courage that is needed - it's the relief of honesty.  Be-Attitudes are a necessary step for all of us in finding acceptance.

True to my own convictions, I had one of "those" sessions with my oncologist last week.  It was a very hot day - he was wearing a short-sleeved dress shirt.  Before leaving, he put his arm around my shoulder, smiled and said "these sleeves may be short, but I've still got plenty of tricks up them!" 

Be-Attitude - for you shall be rewarded...in this case, with a reassuring message and a comforting hug.

 

Ethical Will

Ethical Wills are not new  - apparently, they have existed verbally for millenia and are even mentioned in the Bible.  I was unaware of the concept however, and find the idea novel and thought-provoking.

An Ethical Will is not a binding, legal document but rather one that is written by you, to your family and friends, as a legacy of what you want them to know and remember about you.  Its contents can be summarized by the following questions (familiar to some as the prologue to meditation):

1. Who were you?
2. What did you truly want?
3. What was your purpose?

An Ethical Will is based on your values, not possessions.  According to the legal society, it is a more treasured inheritance than any material gift.  It may take the form of a letter, a book, a voice recording, a video, favourite music, pictures, crafts - a combination of all of these - in essence, your memoires as you have experienced them.  Many of us have attended "Celebrations of Life" - post funeral gatherings - where family members have amassed some of the foregoing and leave its interpretation to the viewer.  An Ethical Will is you, writing about your life, your view of how you want to be remembered - your "bequeathed comments" made to specific individuals.

Why do it?  An Ethical Will is an extension of who you are - a form of continuity, perpetuity.  It explains.  It gives you the ability to say things you may have left unsaid.  It's introspective and passes on your hopes and wishes for others.  In a sense, it's a way of controlling your outcome.

http://www.survivorship.org/ lists some topics you may want to consider:

• What would I not want left unsaid if I died tomorrow
• My definition of true success
• The lessons I've learned in life
• Why I love you and why I will miss you
• What I appreciate the most
• What I've learned from mistakes
• What I've learned from other members of my family/friends
• What spirituality means to me
• My happiest/saddest/funniest moments
• My wishes for you/my husband/my children etc.

I'm not sure that this is the appropriate forum for bringing up old grudges or complaints - but who knows?  Maybe it is - you certainly will have the last word!  That is, until Aunt So-and-So dies, her Ethical Will is read and she denies everything! 

Preparation of an Ethical Will is a soul-searching process - it's a special inventory of your aspirations, hopes, principles - your life's work.  Open a file - add to it when you think of something that says "you".  Keep this information in the same safe place as your other legal documents.  Here's a free template: http://www.ethicalwill.com/

Weighing In

We've all felt the shock (and fear) of seeing an extremely emaciated person at the cancer treatment centre.  With ovarian cancer, there are many reasons for severe weight loss including complications from surgery, intestinal blockage, ascites, disease encroachment, chemotherapy side effects, pain and depression.  Our tabs on Advanced Disease and Advanced Disease Dietary Help give an in depth description of the more notable causes.

Putting on weight during illness is as daunting as dieting and is equally frustrating for the patient and their families.  A "healthy" appetite is viewed as just that - healthy. Oncologists have reported that some of the most stressful times in a patient's journey is when their spouse or loved ones interpret their lack of appetite as giving up - an unwillingness to live. 

Whether you're being weaned off TPN or recovering from a bowel obstruction, knowing that you must put weight back on is challenging, a bit scary and requires diligent work.  Not regaining  weight weakens your immune system, puts you at added risk for osteoporosis, causes nutrient deficiencies and will ultimately lead to disease progression. 

Theoretically, one needs to add 500 calories a day in order to gain one pound per week. 32 years ago, when my mother was originally diagnosed with breast cancer, she was told by her doctor to eat everything and anything she wanted.  He told her to choose cream over milk, butter over margarine.  Today, we think we're a little wiser (maybe not!)... remember being taught the difference between good and bad calories?  Also be reminded that cancer thrives in an acidic environment so try to choose the majority of your foods accordingly.  Here's a chart outlining foods which are alkaline and those which are acidic:
http://www.rense.com/1.mpicons/acidalka.htm 

Normally, a patient's healthcare provider should guide them as to what form of food is appropriate - i.e. if you're post-bowel blockage or surgery, you would be encouraged to start with juicing and purees rather than raw foods.

Here are some basic suggestions for regaining weight:

1. Plan and count your calories.  Make every mouthful count.  Livestrong has a neat calorie counter app for either wanting to gain or lose weight.  It will calculate your ideal weight, let you search their library to see the caloric benefit of millions of individual foods and help you track your progress.  http://www.livestrong.com/thedailyplate/  Check out the site before preparing your shopping list.
2. Start slowly and eat/snack six times a day.  Overwhelming yourself with large meals can be harmful and discouraging.  Additionally, carefully planning scent and taste can make a significant difference in stimulating your appetite.  I remember my own emancipation from the "feed bag" - having been nourished with a completely balanced liquid (TPN) for ten days following surgery - then with the flick of a switch returning to solid foods - was very confusing and more than a bit frightening. 
3. Add healthy fats such as nut butters, avocado, omega 3 oils.
4. Make liquid calories count - choose 100% fruit drinks.  Wine is a fruit drink and an appetite stimulant!  Don't be afraid to revert to a food supplement drink in lieu of a snack.  Freeze it in a popsicle container for variety.
5. Be consistent - keep a journal - write down what you've consumed and add it up each day.
6. Include exercise...it builds muscle, increases your appetite, helps with chemo fatigue and improves your mood.
7. Go easy on yourself...leave a little room for a treat!

Educating caregivers is essential in supporting patients with weight loss "whiplashes".  The speed of the decline can be alarming and the recovery can take time.  In cases of very advanced disease, recovery is not always possible - this too, requires special understanding.

Survivor

Barbara Ehrenreich wrote a brilliant essay called Welcome to Cancerland  for Harper's Bazaar in 2001 http://www.barbaraehrenreich.com/cancerland.htm in which she says:
"Does anyone else have trouble with the term 'survivor'?' I ask, and, surprisingly, two or three speak up. It could be "unlucky," one tells me; it "tempts fate," says another, shuddering slightly. After all, the cancer can recur at any time, either in the breast or in some more strategic site. No one brings up my own objection to the term, though: that the mindless triumphalism of "survivorhood" denigrates the dead and the dying. Did we who live "fight" harder than those who've died?" 
 
By definition, everyone is a survivor...one that survives...to remain alive, to continue to function.  Society however, celebrates most cancer survivors - bestowing upon them a rarefied status as if we'd come through a great battle - blazing with glory.  Some survivors would agree, others would take the stance that cancer is a man made disease, supported by the continuing abuses of man made products and then chemoed to near-death by man made pharmaceuticals.  These are the "mad as hell" variety of survivor - the type that are more comfortable using the word victim.
 
Wikipedia makes this highly interesting comment on the definition of a cancer survivor:
"The ideal survivor, like a superwoman who simultaneously manages her home, family, and career, struggles valiantly to prevent cancer from affecting loved ones by appearing, behaving, and working as much as possible. Once the immediate crisis is past, the person may feel strongly pressured to donate time, money, and energy to cancer-related organisations. Above all, the ideal survivor does not die of cancer. People who publicly conform to this ideal are given social status and respect." 
 
Good grief!  "Social status and respect" - for conforming and not dying (publicly) from cancer!  I'll certainly try not to!

I think if we were arguing the semantics of the word "survivor", we could come up with any number of alternatives but what is really at odds here is society's head-in-the-sand approach to the realities of cancer survivorship - ignoring the ongoing physical dramas, psychological scars, relationship struggles and financial worries.
 
On June 3rd, National Cancer Survivors Day http://www.ncsdf.org/ - a day for all survivors wherever they are on their journey - I will celebrate being alive - continuing to live.  I welcome this opportunity to educate and increase awareness (with or without the promise of social status) - and hopefully earn society's respect by working hard for answers for those who have gone before us as well as for ourselves.



There is an excellent website called Survivorship A-Z http://www.survivorshipatoz.org/ which includes topics which are extremely practical without the sugar-coating. 
As well, http://www.livestrong.org/  was formed for survivorship and the challenges which a survivor faces in the real world.  They have a national network of Centers of Excellence in Survivorship which provides support of all types.

Run Report

Sunday, May 13th marked the 10th Annual Run for Ovarian Cancer, London, Ontario.  Sunflower Sisters put together a team of 25 runners, walkers and "strollers" and at last count, raised over $11,400.  We're still a bit fuzzy about the grand total due to the Run Treasurer's need to manually handle and post personal cheques and cash.  The overall event goal was $160,000 and they announced a (sub)total of $180,000!!

Sunflower Sisters Team 2012

The day started out ominously.  I was awakened at 5:20am by two things - firstly, the sound of slashing rain on the skylight and secondly, by my darling husband moaning with a sore tummy and flu-like symptoms.  Oh boy...

As for the weather, my Dad claims a direct connection - a hot line to the Almighty - and told us not to worry.  Not to worry?  Hours later, we arrived at the Run grounds and it was still pouring - with all of us standing around in rain gear and umbrellas or simply getting soaked.  Hubby perked up (not sure if that was true) with the help of Gravol and tea - he refused to be left at home.

We assembled in the soggy parking lot - handed out t-shirts and caps - worked our way down to the rallying area and miraculously, on cue, the rain stopped and the sun made a valiant attempt at peaking out.  Thanks Dad!

Our brother-in-law - now claiming bragging rights for years to come, after recently running and (more importantly) finishing the Boston Marathon - led the men to the starting line - those who would actually run the 5km.  Nice to have a ringer!  His wife, our own webmaster and Team Leader, Lisa, also a running enthusiast, led the women.  Not only did they run, but they doubled back and joined up with the rest of us so we could all cross the finish line together!  And cross the line we did - in style - everyone jogging and pretending that we'd done that all the way!  We had a great walk, lots of good chatter and laughs and thoroughly enjoyed the beautiful venue.  The running/walking path follows the Thames River - lined with wildflowers, old arboreal forest and teaming with birds and ducks...and yes, everything in London, Ontario is named after everything in London, England!

I was profoundly moved by the arrival of my departed teal sister's husband, two sons and daughter-in-law who joined us for the walk.  They were overcome with emotion from the flood of memories and our hugs.  We can only hope that it was a giant step in their healing.  Another Sunflower Brother, a friend who'd lost his wife to this disease two years ago, joined us as well - it too was cathartic for him.

We entertained about 30 people after the event - the house was abuzz with chatter and conviviality for hours.  We wished all of you could have been with us for the celebration.

I'll end this Run Report by saying how extremely humbled I am by the overwhelming enthusiasm, love and support that was given for a cause that united us as none other could - in the combined hope that the efforts made and funds raised, will make a difference.

Thank you!

Mother's Day 2012

Sunday, May 13th is Mother's Day in North America but for some reason we've gotten our dates mixed up with our families in the UK.  They celebrate "Mothering Sunday" on the fourth Sunday of Lent - so this year, it was on March 18th.  

No one really knows how Mothering Sunday/Mother's Day began other than the fact that it has been celebrated since the 16th century. The day was possibly conceived as a celebration of Cybele, the Roman Mother Goddess.  Other theories include the fact that it is simply the mid-point of Lent. 

It was an extremely important day for boys and girls, men and women "in service"  i.e. maids, butlers, serfs etc., as it was declared the only day they had off - yes, in the year!  The holiday was given to go and visit their families and was considered quite a privilege.

Traditionally, these reunions included the baking of a Simnel Cake - a fruit cake with marzipan - but as it was Lent, it was saved for Easter.  Just for fun, here is a recipe for Simnel Cake:  http://projectbritain.com/easter/simnelrecipe.html

Some customs migrated easily across the sea - as one friend recounted, "It was in the '50's and I would buy a bunch of violets for my mum - they cost 6p - I remember - it was the same price as a chocolate bar."

A lot of families, both near and far, will be without the centre of their family this Mother's Day.  Many of us, myself included,  have lost our mothers prematurely to the dreaded disease which we now find ourselves facing.  Many of us however, have been given the legacy of a compassionate and caring role model.  We have seen first hand, how to live, love and die well.  My mother looked after her family first and foremost.  She doted upon all of us until she couldn't - was hospitalised and died peacefully the next day.

To all of my Sunflower Sisters - may you be given the gift of wisdom to know that the steps that you take along this path are being carefully recorded in the hearts of those who love you - to be brought out in times of need and as a constant reminder of what is important.

Happy Mother's Day to All!


P.S. For those who have forgotten, it's not too late to encourage our team in the 2012 Run for Ovarian Cancer on Sunday:

http://runforovariancancer.kintera.org/faf/search/searchTeamPart.asp?ievent=1003000&lis=1&kntae1003000=4693CBB0DC2D487B8D34408FA371D52D&team=4984407

Many, many thanks to all of you who have so kindly and generously supported us!  I'll report fully next week with pictures!

May is Melanoma Awareness Month

May is melanoma awareness month and with that comes the reminder of sun safety, tanning bed safety and the ABC's of melanoma detection.  For those of us who have forgotten, when you discover a mole or something that you think looks like a mole, here's the watch list:

A = asymmetry - one half is unlike the other
B = border being irregular
C = colour - varied from one area to another
D = diameter - greater than the size of a pencil eraser, itches or bleeds
E = evolves - changes over a period of time

Melanoma is one of the deadliest cancers but has a 95% cure rate with early detection.  It is often unrelated to sun exposure as it can be sporadic or genetic.
   
A story about one of the more interesting Awareness Campaigns was told to me by my hairdresser.  Volunteers with the Skin Cancer Foundation visited hundreds of salons reminding their operators to look carefully at their clients' scalps.  It is one of the most notorious hiding spots for moles/melanoma and difficult for any individual to detect or follow. 
  
Melanoma can strike at any age and occur anywhere on the body but is more prevalent in adults.  It doesn't discriminate between male and female.  There are actually 3 types of skin cancers of which melanoma is only one.  The three types are treated similarly and are stage dependant.  This is an excellent website for further information:
http://www.cancer.gov/cancertopics/pdq/treatment/melanoma/Patient/page1

Great controversy continues over the use of tanning salons - the type of light bulbs they use - and the amount of time one spends in them.  Vermont and California are currently the only two States in the US which prohibit minors from using tanning salons.  A very prominent media campaign is being staged by an 18 year old Canadian girl - who is believed to have melanoma caused from habitual tanning salon use - hoping that we adopt similar laws.  "There exists significant scientific evidence that indoor tanning is linked to increased risk of developing melanoma..." says the American Academy of Dermatology.  UV light occurring both naturally and artificially is a known carcinogen.

I have had two friends die from melanoma - both male - both quickly - as a result of their moles having been unseen - one had his occur on his lower back and the other on the back of his arm.  Here is a step-by-step guide for self-examination:
http://www.skincancer.org/skin-cancer-information/early-detection/step-by-step-self-examination

Finally, here's the lowdown on sunscreens per Dr. Joseph Mercola - with him saying that many of the popular brands contain even more harmful ingredients than the sun:
http://lewrockwell.com/mercola/mercola127.html
If you can't be bothered to read it, the bottom line is that he recommends the best sunscreen to be covering up - wear a hat and long sleeves.