Patient First

I woke up this morning to an email from youTube that my favourite account had posted a new video.  Naturally, I clicked on it, watched the video. Then I snuggled back down, and spent an hour lying there watching more and more (great job youTube, just as you intended!).  As I lay there daydreaming about my favourite car, I thought about how I have had little time to write on my blog anymore.  I rarely have a quiet Saturday morning to myself anymore, and I rarely put money into the savings account that is to fund the lifestyle which is portrayed in my video-watching guilty pleasure this morning.  But today I was brought back into the room, so to speak.  

Hearing the rumble of the subject in the video reminded me of why my blog is named what it is - and thinking of blogging reminded me of why I started in the first place.  

I am a patient, first.  I am a writer, patient advocate, and now full-time Managing Director of a fabulous Canadian skin cancer patient support organization, but I am a patient first.  Almost four years ago I was diagnosed with metastatic melanoma, and I remain at high risk for recurrence of the disease. That will never change.  In the time that I am here I feel it is my responsibility to talk about this, share it, help others the way I have been helped.  

But there is also a natural progression that comes with all of that. I am learning so much about the disease, and about the landscape of treatment access (or lack thereof) in Canada, that I sometimes find it difficult to separate my work from my personal, especially in a public forum such as this blog on the big ole' world wide web.  I don't want to become one of those advocates that becomes just another name in the melanoma world that can't relate to those who are newly diagnosed.  

I am now farther along in my journey and one would have to use the tags to the right side of this screen to go back to see all of what my family and I went through.  Not many people want to do that, which is okay, it's there if they change their minds, but I still want to stay relevant, let others know they are not alone.  

Though I am now working in the field and traveling a bunch to further this work for Canadian patients like me, and haven't had time to write about it as much, I am still dealing with the every day challenges of being an advanced melanoma patient.  

I still parent my kids 24-7, I still have CT scans (and Scanxiety!) every six months, I still have bloodwork every six weeks to monitor my health (because I have proven inconsistent in taking my prescribed meds and supplements - tisk!), I still have the very valid fear that the next mole or bump or swollen lymph node could land me back on the surgeon's table, and I still really fear the possibility that I won't get treatment if I need it, because my government doesn't deem it (but I digress..). 

I follow several well-known melanoma advocates and bloggers around the world that were a huge support to me personally; we went through a lot "together," they helped me so much (though they are not aware of me LOL).  Actually in October in Australia after one session I was on Twitter and realized that I had been sitting LITERALLY two seats behind one of my fave Aussie bloggers!! I missed my chance to meet her but we did have a brief Twitter conversation afterward, where I could adequately fan-girl over her presence in the room I had been in. Yah, you remember me Naked Gardiner, I know you do. ;-)

But sometimes I read their articles and feel they are harder to reach than normal people, normal patients.  These blog celebrities shared their painful experiences, their challenges and their triumphs as they encountered them, as I have, but they have moved on to the higher-level advocacy that comes with the territory.  When I was first diagnosed I didn't understand those things, and I felt they weren't entirely accessible.  
Now I do understand those things, and I want to remain accessible. That's part of why I don't post as much as I used to, the stuff I talk about on the advocacy front is perhaps more applicable to those who seek out an organization like Save Your Skin, not necessarily "regular people" like myself, who are simply melanoma patients.  But I still am that regular person, and I still want to speak to melanoma patients.  Give hope.  You too can survive.

Recently I have been in the situation where my blog has come up, and I have told my story, and shared tears with the new friends I made in that conversation, and I remembered that this is where it all started.  My blog to keep friends and family updated, turned place to vent my whiny fears and frustrations, turned dream career, is still the mainstay of my goals for my future and that of my kiddos.  

I still want to move to Italy and live in my Maserati. Just saying.  (and my boss says no problem - I can work from there just as well!)

But in the meantime, I will stay here, get the girls through high school in the town they have lived all their lives, and continue my work in the Canadian melanoma space, as an advocate, as a patient.  

Actually there are a couple of opportunities on the horizon where I will be sharing my story in a public space again.  Both happen to be in Montreal (poor me, I know, having to randomly fly to this lovely city); one is a speaking engagement in which I will share my story with a room full of pharmaceutical industry representatives (who are wonderful people by the way - don't let the tree-huggers make you think they are the evil in the world) (THEY saved my life).  

The other is a filmed interview for a website that was launched in 2016 in conjunction with our patient project "Melanoma Through My Lens."  More to come on these, I will be facebooking them etc. as well as sharing them through the Save Your Skin Foundation website - shameless plug - on which I spend a lot of time writing and updating. 

In the meantime I'll be working on our report from attending the Canadian Melanoma Conference in Banff last weekend.  Since I have heard that there is such a thing, I have wanted to go, so that was a very cool experience.  I was fortunate to meet in person many of the Oncologists from around the world that we work with on a regular basis, plus, from Sunnybrook, my very own Medical Oncologist AND my Surgical Oncologist (who I haven't seen in a couple years!) were there and presenting on the agenda.  It was an unspeakable honour to be in the same room as all of these melanoma experts and to be able to bring back their teachings to our knowledge base. 

Was awesome too, to be having lunch with my Surgical Onc. and she recognized me, I certainly didn't expect her to.  I had spotted her name on the program and planned to stalk her at the conference teehee - She said she saw my name as an author on the scientific poster displayed at the conference and wondered if I was the same one as her patient - sure enough it is me. :-)  We had a nice chat to catch up.  

And yes we did just complete our poster, we are working to have it peer-reviewed, and possibly published at the Society for Melanoma Research Congress in October in Manchester UK.  I am making that a personal mission.  The poster is based on our patient survey results from last Fall, about the mental wellness of patients after a melanoma diagnosis.  Feel free to check it out here.  We are continuing work on this project so I'll keep you posted.  hehe  posted... on the poster... get it  ;-)    OK time for me to stop rambling and get to work on the report.  

Happy Saturday All, and thank you again for your interest and support (extra thanks if you have made it this far in yet another long blog post).  

For your viewing pleasure, here is a photo of my future Maserati.  Mine is the black one, although I haven't yet decided whether or not it will be a convertible... I'm leaning toward not, to help protect myself from gratuitous sun exposure (for which I used to be a glutton, hence the melanoma blog).  

PS - Eleven years ago I spent a week in Florence, and next Tuesday my daughter is going there on a school trip.  Emotions are high in my house at the moment, as this is the first time the twins will be so far apart for so long.  And because I am jealous as hell. LOL  I want to go too waaaannhh 

Re-group, restore, and re-charge

This summer has been exactly that of the title of this blog: a few months to re-group and recover from an unexpected turn in the roller coaster of life, restore my faith in others - and in myself, plus re-charge my batteries via some changes in pattern.

afternoon siesta in Cuba, just sayin'  :-) 

I am happy to report that I have achieved all of the bucket-list goals I set for myself in the spring, and I have many loving friends and family members to thank for the support along the way.  Life is crazy enough without adding the post-cancer dynamic to it, but with the love of true friends it is possible to get through.  Knock on wood, my health has been great - energy great, losing weight, have full confidence for another good CT scan in September.

Last night the girls and I celebrated a huge milestone with a bunch of new friends; the end of summer vacation brought the last shifts of their summer job(s).  They have worked hard all summer at a high-end restaurant in the next town over, as the resident "Aquatic Technicians," working three nights per week each sweating their asses off in the dish pit.  

There were many times they dreaded going to work and feared the pressure and fast pace, but they stuck with it and buckled down with the team and "dumped it every night!" - I quote the Executive Chef's compliments of them last night LOL  There were several times we all thought they might quit but nope! They persevered, and they are now basking in the glow of a job well done and the power of sticking with a well-laid plan.  This accomplishment is in part to the credit of the Chef's team in the kitchen, they are an inspired group of young entrepreneurs who welcomed the girls with open arms, taught them well, and supported them when they needed it.  This respect in turn earned the girls' desire to do a good job for them and to pitch in extra when the team needed it.  

All summer I watched this transformation in the girls, from anxiety and trepidation to full-on confidence and a lift in understanding of the working world as they experienced what it is to be part of a team that values their effort.  They were inspired - as the rest of the staff are - it was contagious, and as a result it has provided them with a plethora of fun memories of stinky dishwater and singing chefs.  :-)  I am one proud Momma.  *I may or may not also be slightly relieved that our six-night-per-week 10pm drives to Thornbury are over* LOL 

We made lots of memories in addition to work; one notable experience was seeing Green Day in Toronto, now ranked as my favourite concert of all time.  We also traveled a bit, the girls to a friend's cottage, Canada's Wonderland, several shopping trips to the city, and my long-weekend getaway to Cuba.

  

Yes, Cuba.  I, the eternal skin cancer patient, went to sunny Cuba in August.  It's not what you think, rum-soaked resort life beach pool sun sun sun, no... there was some rum LOL  but I got to drink it in the home of friends of my traveling companion, with whom I had previously traveled to Cuba in 2008.  We wanted to get away for a weekend this summer just the two of us, a girls' weekend - and as we priced hotels etc. in the likes of Niagara, my Cuba-expert friend suggested for the same price we could buzz down there for a few days.  And so we did, staying in the city of Moron, at a hostel, living the local Cuban life - and enjoying the local Cuban food (which is amazing, and a FAR cry from what is served at Cuban resorts).  

We went on horse-buggy rides to tour the city, relaxed on the balcony, went to a friend's birthday party, ate avocados and mangoes unlike the puny imports we have here, had carefree afternoon naps (in our blessedly air-conditioned room), generally just took a step back and chilled out... we laughed, we cried, and we talked non-stop, as has been our talent since we met in grade eight.  :-)  It was SO good to re-connect, I really needed that time with my buddy, and I came home feeling strong and empowered, refreshed in exactly the way I was hoping this trip would do.  (more pics below)

This trip is actually the start to a busy few months of travel plans in my household, I am happy to say.  I have always loved to travel and wanted to do more of it, but with the setback of the last three years I thought I was grounded, I had sort of written off my plans for world travel, staying home with young kids and a career taking most of my available energy.  But.... intrepid as I am... I have somehow landed myself in the wonderful position of being invited to travel again, and I am repeatedly proving to myself that I can actually do it.  

Flying to Montreal with Save Your Skin Foundation last September changed my life, and in the year since then I have come to realize the extent of the changes are even still unfolding.  

I am grateful beyond measure to be freshly back into the foray of international travel, Cuba was a good tester.  My next trip is for a September weekend at Whistler, via Vancouver, for a work meeting.  November I have work in Toronto and Ottawa, and in December the girls and I are going on a much-deserved (and long-delayed) vacation to the States - we are going to California!    

The pièce de résistance is in October...  I can hardly even believe I am saying this right now, but... drumroll please...  I am going to Australia!  I have the honour of representing Save Your Skin at the World Congress of Melanoma 2017 and subsequent meeting of the Global Coalition for Melanoma Patient Advocacy.  I will blog more about this in the near future; there is lots to explain, as I have been remiss in my blogging about the work I have been participating in for melanoma patient support in Canada.  My Aussie travel visa is approved, I am working on booking flights, and I will soon choose the sessions to attend at the Congress: I get to select relevant information and data to bring back to Canada from the world leaders in the prevention, diagnosis, and treatment of melanoma skin cancer.  Words cannot express the honour I feel for being given this task.    

So as I daydream about the summer passed and the koala bears to come, the girls are preparing for back to school on Wednesday - there is much organizing of backpacks and choosing of outfits happening upstairs LOL   Tonight we are having an end of summer campfire to celebrate our successes over the past few months, and we will renew our vow to take life one step at a time, and to live every day to the fullest.  

 Sickest taxi I have ever been in

 Casa guard dog my buddy Rosie

 Laguna de la Leche

Market day in Moron, Cuba

Cheers!  Viva Cuba

April 2008 hot messes ~ August 2017 hot messes part 2 :-)

The Mudmoiselle Effect

As I mentioned before, I was asked to be a "Mud Ambassador" for the 2016 Mudmoiselle run in the Beaver Valley at Talisman Resort near Kimberley, Ontario, Canada.  I was honoured from the start, but also a bit nervous. 

Obviously, I openly share my cancer story at any given moment...blog...public speaking...etc.  Usually I take the opportunity in stride, motivated to try to help others avoid at least some of the challenges I have met, but the odd time I do find it overwhelmingly emotional.  Melanoma Monday this year was like that, I was very sensitive and almost backed out at the last moment.  

I am happy to share, it is cathartic for me, but even after all this time I still sometimes have an anxiety attack from the fear in which I live.  BUT.... buoyed by the support of my family, friends, fellow Ambassadors, and the organizers of the event, I stomped that fear and jumped on the Mudmoiselle train in my bright pink shirt. 

From the moment I began talking about the event on social media, I received texts and messages from friends all over saying they wanted to participate.  Crazy ladies - I posted the previous years' videos and photos and made sure they all knew I wasn't myself doing the run but I would be there to cheer them on - and they did it!  

Some old friends (like haven't seen them since Ukrainian school in Sarnia almost 30 years ago old!) and some new friends, with whom I have vowed to get Mudmoiselle tattoos in preparation for next year!! haha..just kidding on that one, not sure about the tattoo part.  

All these lovely ladies dived into the event head first so to speak, raising pledges to smash our team goal, getting their friends to join in the fun, and showing up on a pouring rain muddy ski hill to fight the cancer fight.  

 The Crazy Mud Sisters - my Uky childhood friends from Sarnia :-)

Seeing my friends and all of the other 300+ women so pumped up to have fun for such a huge cause made me feel incredibly humble, and empowered, at the same time.  

My emotional moment was private, from my viewpoint partway (a very tiny part) up the hill; looking down across the organized area all set up, the music pumping, the obstacles shiny and ready, and I felt ready too.  I felt like a survivor.  I felt like the kind of person these women might be thinking of as they were getting muddy for their families and friends. I was ready to represent.  

I was given the honour of representing those who could not join us that day, and of being a symbol of hope to anyone who may need it, now or in future.  All of the Ambassadors were.  We all had our own reasons for being there, but I know they were mixed with the honour of simply being alive, and being able to keep kicking the crap out of cancer.    

The well-spoken DJ for the day made a very good point that hit home for many of us:  100% of people are touched by cancer.  

We ALL know someone who is or has been fighting the cancer fight, is or has cared for someone, or lost someone in a cancer battle... it was a heavy point but an effective theme for the day.  300+ Mudmoiselles wore their names proudly and fought to overcome the obstacles of the day.  Rain, mud, sweat, tears, smiles and cheers - it was all there - in the name of fighting cancer. 

Very powerful! And so inspiring.  I got to personally THANK so many of the muddy ladies as I gave them their medals at the finish line.  I felt like I was somehow giving back to them at least a tiny bit of the grit and effort that showed on their faces as they overcame all sorts of challenges to arrive at the finish line smiling and triumphant.  

I felt so energized by the day, and that strength is still sticking with me.  It's incredible.  Thank YOU Mudmoiselles, thank you Canadian Cancer Society, thank you friends near and far, thank you to everyone involved.  For donations and media, organizers and volunteers, for the hugs and the cheers of encouragement, I will remain grateful.  

Mudmoiselle in the Beaver Valley September 10, 2016 will always be in my memory books as stellar. 

Thought I'd share some photos in addition to the ones I or Bluewater Canadian Cancer Society put on facebook... enjoy!

These are the shirts Sonya had made up for "Natalie's Team(s)" - everyone generously donated to "buy" the shirts and then Sonya and Greg donated the money back to the event!  Thanks All!  *honoured*

Oh and my kiddos were Volunteers for the day as well, they helped run a couple of the obstacles - was SO fun!  Can't wait 'til next year!! 

Thank you to Save Your Skin Foundation for the UV indicator bracelets and key chains for the event - next year we'll need some more ;-)  ---^

Photos are all mine except where hyperlinked... thanks!  

Escarpment Magazine - Guest Writer, me!

I was thrilled when Escarpment Magazine asked me to write an article for their Summer 2016 issue; about the importance of sun safety and skin health, based on my experience with stage three melanoma.  

An elegant and informative local publication that I have admired for years, Escarpment Magazine covers a collection of local home/garden design, recreation, fashion, real estate, health/wellness, and foodie finds that delight all audiences.  They cover everything in local sporting life such as bicycling, hiking,  and skiing, as well as fashion layouts featuring local models in clothing from shops all across Bruce, Grey, and Simcoe counties.  

Luxurious yet accessible, and 100% LOCAL.  I love it!! 

It is available in our area on stands in grocery stores, news outlets, and at several of their advertisers places of business, as well as subscription by mail.  (In fact I bought a subscription for my Mom so that all year round she can appreciate Georgian Bay Living from her Sarnia and Florida homes) 

It is also available online free of charge.  Please click here to see the article I wrote:

Applying SPF to Your Summer Plans

Thank you Haily, Clay, and everyone at Escarpment Magazine for inviting me to share in your Summer 2016 issue.  I am honoured, as a writer, and as a melanoma survivor.  

Congrats also to Clay and Cara for their upcoming promotions based on Deena's semi-retirement... I smiled ear to ear when I read that in her Editor's Note!  :-)