Thursday, June 30, 2016

Column - Meaford Express - Simcoe.com June 2016

Please click below to read my column in The Meaford Express this month.  Thanks!

"When I was a teenager, I lost my father to a chronic illness with which he suffered for seven years before he passed away. My young adulthood was quite consumed with his condition; he couldn’t walk, speak, or see properly; he had had strokes which left him trapped inside a body that was no longer his own. He must have felt absolutely tortured every single day with his limitations.

I did not understand then as fully as I do now how he felt..."

http://www.simcoe.com/opinion-story/6743957-from-a-caregiver-s-perspective/


Saturday, June 18, 2016

The mid-June Rush

Been a crazy week around here. Again. Still LOL (do I sound like a broken record?)  

Quick run-down: 

I turned 40 this week!  Yahoo!  I am very happy about this, for a couple of reasons... I was SO ready to ditch my roller-coaster tumultuous 30's, and... when diagnosed with stage 3 cancer at 37 there was a while that I feared I would never see the age of 40.  

To say I am thankful to be forty is an understatement, but I am. Thankful!  Have had a low-key week or so of celebrations, no big party this year, will save that for another time.  But did get to spend time with a bunch of my Besties over various lunch dates and quick visits, and can even say I am stretching it til tomorrow when I visit another.  The theme of my birthday this year is like this:


Wednesday evening we had our bicycle-riding photo shoot for the local magazine in which I will be published in the Summer 2016 issue.  Was nice to get back on my bike... might make that a habit.  I would say it is NOT true what they say: just like riding a bike, you never forget how.  That is BS - as I almost crashed in to Claire a couple times at Beautiful Joe Park!

I have been working diligently on taking photos for the upcoming "Melanoma Through My Lens" project, more information to come.  Yesterday I was even up at dawn to take photos at the harbour... I love our beautiful town.  


All things grade-8-related are in full explosive swing; grad dresses are purchased and are at the seamstress' for alterations.  Photo session is booked, homework is done, and report cards are on way.  Bus schedule and class details are en route from new high school in Owen Sound eek!  
Next week WE go to Ottawa for a three day adventure, I am excited to be a parent chaperone!  

I have two articles to write before we leave for Ottawa (oops I was late for the Meaford Express last week, but we did have great coverage for Mudmoiselle so it worked out that "I" didn't overload the paper anyway ;-)  

http://www.simcoe.com/news-story/6721955-beaver-valley-mudmoiselle-returns-in-september/
 
Speaking of Mudmoiselle... yesterday I accompanied Jen from the Bluewater Canadian Cancer Society for a promo spot on Rogers TV in Collingwood. 



http://convio.cancer.ca/site/PageServer?pagename=%2FUFE_ON_Mudmoiselle_2015_homepage&s_src=Offline&s_subsrc=mudmoiselle_ca&utm_campaign=Mudmoiselle_ON_2015&utm_source=Offline&utm_medium=VanityURL

And in the afternoon I attended the Heroes for Hope assembly at Meaford Community School to watch my little friend and neighbour have her pretty blonde ponytail cut off to be donated for wigs.  It was a great turnout and lots of funds raised for Canadian Cancer Society.  Great job kiddos!! And even the police/firefighters present shaved their heads and got mohawks for the cause! 



One more thing... I found out the other day - very exciting news!! - The Toronto Blue Jays are doing a skin care/skin cancer awareness day on July 2 2016.  They are playing the #NotJustSkinCancer video at the game!!! and featuring Save Your Skin Foundation and Melanoma Network of Canada WOW!!! And they have invited us four participants in the video with complimentary tickets to the game and a chance to give a big wave on the Jumbotron!   The girls and I will be there to represent Save Your Skin Foundation.  



This invitation is an honour and a fun bonus - thank you Toronto Blue Jays!!  We can be there in person to see the Jays beat the Cleveland Indians.  ;-) 






PS - One more tiny thing - I have an appointment with a new Dermatologist, whom I will be able to see in Meaford.   VERY happy about that!  Farewell, Ice Queen.  



PPS - One regret I have from this busy season... I have had to cancel/postpone my speaking engagement at a high school friend's grade4/5 class about Sun Safety.  I'm sorry to postpone, but I will aim to be better prepared next spring to speak to youth about skin care and sun safety.  Thank you for the invitation, I owe you one! 


Thursday, June 9, 2016

Sun Awareness Week June 6-12, 2016

Since 1989, the Canadian Dermatology Association’s annual, nationwide Sun Awareness Week has helped educate Canadians about dangers of excessive sun exposure — and reduce the incidence of skin cancer in the country.

This year’s Sun Awareness Week takes place Monday, June 6 to Sunday, June 12, 2016.
http://www.saveyourskin.ca/events/sun-awareness-week/

I celebrated National Sun Awareness Week by having a mole removed.  I had this funny mole that was developing a black edge, so... I took it to my doctor and she relieved me of it right on the spot! So to speak.

She said it was a classic "S K"(seborrheic keratosis) - Nothing to worry about, totally normal.  She burned it with liquid nitrogen right there and confirmed that yes indeed, it was even freezing up like a SK.  So yay!  I was stressing about that mole a bit, even though I was told melanoma would be more likely to appear internally than on the surface, especially in a new spot so far away from the original wide excision.

Otherwise I have been working on various melanoma awareness initiatives during this, National Sun Awareness Week.  I am preparing for a photo shoot with a local magazine that I will share when the Summer Issue is published - very exciting.  Bucket list stuff, that one.

I have also been invited to participate in a project with Save Your Skin Foundation to bring awareness to the "journey" of advanced melanoma.  It too is top secret until reveal time, but it is a very creative concept that I am proud to be a part of.  Stay tuned!

Thank you Save Your Skin Foundation for arming me with a whole bunch of great swag to help spread awareness of Sun Safety and Skin Cancer Awareness!  I will wear it with pride and share it with everyone I meet.  

The bracelets especially will be of interest at the speaking engagements I have been invited to at a couple of elementary schools. They change colour in sunlight to indicate the level of the solar UV index.


The key chains as well... the centre changes colour depending on the level of solar UV index. The darker the shade the higher the UV. The shades match the tones around the outside as a guide.  Very cool! 


Mudmoiselle - Beaver Valley

Well here it is.. June.  A new month for cancer/melanoma/survivor advocacy, and a new announcement.  

I am excited to tell you that I have been asked to be an Ambassador for Mudmoiselle in the Beaver Valley.  A MUD Ambassador!  


It is an honour to be invited to participate in this event.  I will be there to cheer on teams of women and crowds of volunteers who will gather at Talisman Resort in September to raise awareness and funds for cancer support via the Canadian Cancer Society.  

The Bluewater Community Office is working hard to coordinate a 2nd annual for-fun 5km "mud run" style event going up and down a ski slope.  Teams of women dress up in crazy outfits and have a day of outdoor fun after raising pledges to benefit the Bluewater area supported by the Canadian Cancer Society. 


Thank you for inviting me to be a Mud Ambassador!  I am assured I will be very helpful simply being at the event and cheering the others on and being there to share my story... but... I have a sneaking suspicion I will be getting dirty too.  :-D  

I look forward to sharing lots of information about this event and its benefits in the coming months!  Look out cancer - Mudmoiselles are after you!!!

Please see CCS Bluewater's release from the press launch and photo opportunity we had yesterday afternoon at Talisman Resort in Kimberley/Beaver valley, Ontario:   Oh yes and check out the video (below) of last year's event woohoooo!!!!





FOR IMMEDIATE RELEASE

Canadian Cancer Society, Bluewater Community Office

c/o Jen Wright or Carly Furniss, Fundraising Department

jwright@ontario.cancer.ca or cfurniss@ontario.cancer.ca

519.376.6011

Mudmoiselle in the Beaver Valley Officially Kicks Off with Cancer Survivor Mud Ambassadors On Site

Beaver Valley, ON (June 8, 2016) – To be able to take on the obstacles, the mud, the pushing, the pulling, the jumping, the climbing and the grueling uphill hike on the former ski hill of Talisman Resort is a very humbling experience. “We’re running for people who take on battles bigger than this every day,” Jennifer Wright, Community Fundraising Specialist with the Canadian Cancer Society says. “Mudmoiselle is an obstacle course that raises funds to help fight back against cancer, while proving that there are a whole lot of people who want to drag this disease through the dirt!”

Last September, 347 Mudmoiselles dragged cancer through the mud and raised an admirable $100,000 for the Canadian Cancer Society to throw in the ugly disease’s face. This year, the Bluewater Community Office is hoping to push that total raised to $120,000 and more Mudmoiselles taking part.

Natalie Richardson, a local mother to identical twins, writer, and two-time cancer survivor is helping the Society push for a stronger Mudmoiselle turn out by taking part as a Mud Ambassador.  

“Participating in Mudmoiselle gives me another opportunity to show my unending gratitude to my community and all of the resources that have been there to support my family and I in this difficult time,” Richardson says.

Richardson was first diagnosed in April 2014 with stage 3b nodular melanoma, and was then diagnosed with papillary thyroid cancer (unrelated to the melanoma) the following September. She is already a spokesperson for Save Your Skin Foundation and has been sharing her journey on her blog, ‘Impatient Patient Momma’.

“Sharing my experience online helps my family, friends, and I cope with this roller coaster ride in a brutally honest and often comical way,” Richardson states.  She remains positive and inspirational to readers and friends and is sure to be an asset to the promotions of this year’s Mudmoiselle run. “To know that funds from this event go directly back to Bluewater Canadian Cancer Society for the needs of cancer patients right here at home is enough to get me on that hill on September 10 th !”

Richardson joined Jen Wright, the Mudmoiselle planning committee, some of last year’s Top Fundraisers, and other cancer survivor Mud Ambassadors Sophie Voss, Pauline Kelly, Michelle Metcalf, and Carolyn Letourneau at Talisman on Wednesday to officially launch the September run. Promotions will be rolling out online, on air and through print media over the next few weeks.

“We’re really hoping to get some more Mudmoiselles up there this year and increase our fundraising efforts,” Wright explains. “There’s something in it for everyone and we’re really looking forward to another day of inspirational fun!”

If you’d like to learn more about, or register for, Mudmoiselle in the Beaver Valley, please visit mudmoiselle.ca or call 519.376.6011. Early bird deadline is August 12 th , after which the price to participate will increase.

About the Canadian Cancer Society

The Canadian Cancer Society is a national community-based organization dedicated to preventing cancer, saving lives and supporting people living with cancer through research funding, services and advocacy. We are Canada’s largest charity fighting all types of cancer and leading authority on cancer statistics and information. To learn more, call 1 888 939-3333 or visit cancer.ca.

For further information or to book an interview opportunity, please contact:

Canadian Cancer Society, Bluewater Community Office

Jen Wright or Carly Furniss, Fundraising Department

jwright@ontario.cancer.ca or cfurniss@ontario.cancer.ca

519.376.6011


Social media information:

Twitter: @MudmoiselleRun or @CCSBluewater

Facebook: Mudmoiselle in The Beaver Valley (event) or Bluewater CanadianCancer Society

Hashtag: #Mudmoiselle


Gastroenterologist: To Be, or Not to Be?

That IS the question.  More like... My relationship with the Gastroenterologist... will there be one?  or not.  Frankly, I'm still leaning toward NOT.

I have had a busy week of medical appointments to start the month of June.  Two trips to Toronto and plenty of anxiety, dread, and confliction.  I await results from the two rounds of bloodwork I had on Monday, as well as the routine head to thigh CT scans I had also at Sunnybrook on Monday.  

I haven't been feeling well, physically or mentally; CT scan drink plus contrast dye IV typically provide me a couple of days of tummy trouble and fatigue, and this time I have been in and out of a low-grade fever as well.  It's stupid - I hate it! *stomping my feet in tantrum*  I was a good girl though, and rushed to my family physician immediately on Tuesday after Monday's Toronto trek.  Family Doc has note of all of my experience and will be in touch upon receiving my test results. 

Part of my family Dr. de-briefing on Tuesday included an update on the Gastro situation.  

Quick re-cap: along the course of my ipilimumab (immunotherapy) treatments on clinical trial August 2014 through September 2015, I received some damage to my intestinal tract, and it presented itself for a while as some pretty persistent need to stay close to a bathroom.  (I am still squeamish about using the word diarrhea on my blog but I digress...)   20-ish% chance of getting colitis from these treatments, as I was aware when I signed the paperwork to become a fortunate guinea pig recipient of a drug that could "cure" my melanoma.  As chance would have it, I am dangerously close to a diagnosis of ulcerative colitis, but I am fighting it all the way.  

In March I met with a Naturopath to get a 2nd opinion (3rd..4th..), in preparation for my meeting with a Gastroenterologist at Sunnybrook.  We decided that I should begin taking 50-billion multi-strain probiotics every night.  So I did.  Most nights before bed I have taken four capsules of a reputable Canadian-made 12-strain probiotic and ...drumroll please... my tummy has vastly improved.  Not perfect, still have a random day or two per week surprise dash to the bathroom, but it is nothing like the exhausting daily struggle I was having.  

My medical oncologist is worried about said tummy trouble, and strongly encouraged me to have a colonoscopy, to assess the damage done by our beloved pacmen.  I refused scope without first having a consultation with the Gastro (which has made Onc slap my wrists - but I wanted to try the probiotics first! Not to mention I am only 8 months post-treatment so it is reasonable to expect my body will need time to heal).  Finally last week I had a consultation with the newest member of my medical team.  

Interesting gentleman, quite close to retirement but still going strong, with a waiting room full of patients wanting his help with their varied experiences with Crohns and Colitis.  He gave me a quick run-down on the most common causes of diarrhea (high-fibre foods, dairy, caffeine, gluten, alcohol) (most of those I already avoid...except..um of course the alcohol), and ran over the statistics of possible risks my intestines could face during and after a scope. (ick)

I informed him that in the time that I had been waiting for my consultation with him, my tummy was much better, and told him about the probiotics (which is the only thing I have changed in my diet since March).  

He gave me a haughty explanation of how a probiotic wouldn't work as it is an unregulated natural product that is a shot in the dark very unlikely to affect my immunotherapy-induced inflammation. "Just as we wouldn't treat an infection with the wrong type of ANTIbiotic, we couldn't expect one PRObiotic to help if we don't know what the exact problem is." (but I am taking a 12-strain probiotic. I kept quiet as I would have appeared to be arguing) 
He also said I should not use the refrigerated probiotics found in a health food store, that I could catch some worse bug from a faulty bacteria floating around in the probiotics.  He said I should seek out a pharmaceutical brand in a drug store.  Really.  Hhmmm that goes against everything I know about probiotics. 

He suggested that I stop taking the probiotics altogether for a week, and if the diarrhea flares up then take the probiotics again and it if stops then he would say I am the ONE person that works for.  *huff* 
I asked him if the scope would show damage done last year, and if yes, would the only cure be to take prednisone?  Because if so I could save him some time as I will NOT be taking prednisone.  He puffed up and said "WHY NOT? Prednisone is man's best friend!"  I gaped in disbelief as he went on to ask me if I was saying that if I was lying on my deathbed from diarrhea would I refuse to take prednisone and just agree to die?  I said NO, but I am not in that situation right now! Aarrghhh  

I asked for help to understand how immunotherapy had damaged my digestive system, and if it can heal itself with time (and/or probiotics, which I didn't mention again), and he said well Dear, I don't know.  "These immunotherapy drugs are all new territory for us and we don't know."

Well that's what I needed to know!  I had refused scope appointments because I wanted to hear that - ARE we going to find anything concrete out from a scope?  Because if my tummy is feeling better and I am managing it on my own then WHY undergo another invasive medical procedure?  I'm all for being a guinea pig, but I draw the line at some tests that are costly to the medical system and to my own mental and physical well-being. 

I say that at the risk of offending my wonderful Medical Oncologist, the Boss.  She was adamant that I have this test, and I am still considering that I will, if for the purpose of her research.  Or if I have another flare-up.  I was planning to speak to her about that in our appointment on Monday, but she wasn't there, so I escaped the slap on the wrist I am sure I am going to receive.  

Her stand-in happened to be the lovely Dr. I met at the Queen's Park event, and I filled her in on the situation.  She said she would relay my experience to my Dr. and have her call me upon her return from the melanoma conference in Chicago.  

I have mentioned before that I am amazed at the amount of self-advocacy a patient has to do in order to find balance in a complicated medical situation.  I know that I risk offending my Oncologist by refusing the scope, and I am not doing it out of disrespect, I am simply following my gut feelings ..oops, pun not intended.  I just want to get over all of this stuff and move on with my life.  Isn't that what I'm supposed to be doing?? Yes, I am stomping my feet in tantrum again.  I am incorrigible. 

So.... I relayed all of this to my ever-calm family practitioner and she agreed that is is completely acceptable to wait it out and see what happens.  She agrees with myself and the Naturopath about the probiotics, and encouraged me to continue as I have been.  If my tummy trouble persists or flares up, we will cross that bridge then.  And I will have the scope, but closer to home, with a copy of the report to go to my team at Sunnybrook.  

The Gastro also left it with me to call back if I want a scope or another appointment, but until then I am free to go... he did not consider a scope urgent, especially after my report that things have improved since the winter.  Perhaps we will meet again, perhaps we will not.  

http://www.slideshare.net/spa718/immunooncology-in-lung-cancer