Countdown to Australia

Next month I will be attending the 9th World Congress of Melanoma in Brisbane, Australia, as the representative of Canadian patient advocacy group Save Your Skin Foundation.  This four-day congress serves as the meeting of world leaders in the field of skin cancer research, prevention, and treatment.  I will be attending sessions covering all of the latest news and topics in melanoma and other skin cancers, and I will bring this knowledge back to Canadian patients. 

In conjunction with the congress, I have the honour of sitting on a working group in the Global Coalition for Melanoma Patient Advocacy, in which we will continue the work spearheaded by Melanoma Research Foundation (MRF).  I have followed MRF since my own diagnosis, and celebrated their work from my corner so far away; namely, this year in May was the first annual World Melanoma Day.

My itinerary for the week is pretty much booked.  In addition to the main plenary sessions discussing melanoma, I have chosen sessions which speak to my personal experience and interests, as well as those of Save Your Skin, as we want more detail in the following areas:

• Advances in Merkel Cell Carcinoma (a rare but very serious form of cancer)
• Basal Cell and Squamous Cell Carcinomas, Actinic Keratosis, and if I can, Uveal Melanoma (a.k.a Ocular Melanoma)
• Surgical management of Stage III melanoma (directly relates to my scars)
• Immuno-Oncology in melanoma
• and one that I REALLY want to know about so I can put to rest the controversy - Sunscreen: Bioavailability and Toxicity (this topic was always on my mind in my tree-hugger days, and it is still a common question asked to SYSF)

My brain is going to be SO full!  I must admit, in the almost-year that I have been working for Save Your Skin, I have allowed myself to be intimidated at times, by the science and politics behind what the Foundation does, but as I buckle down and study it piece by piece, I realize I know far more than I thought.  My colleagues have been patiently teaching me, and I have been soaking up the information but now I find myself actually being able to apply the information to my own experience with melanoma, and it makes sense.  

I was there (still am, of course, my 6-month CT scans are Monday in fact) - I know what they're talking about, I have done my time at Sunnybrook and analyzed every word my medical team has told me over the years.  Now I get to learn from the best, about people just like me, and I understand. It is science - and I'm okay with that - thanks Kathy! ;-)

Aside from the conference, I am taking a day to go hug a koala.  IN AUSTRALIA!!!!!          :-) :-) :-)   #spoiledgirl #gonnawearlongsleeves

 

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22 days remain in my countdown to Australia, and I am reflecting on how this has all happened.  Three years ago at this time I was recovering from extensive surgery, my family and friends were looking after me, I was heading into my third systemic immunotherapy treatment, and I was in a psychological tailspin.  I had no idea whether or not I would survive to see any semblance of the future I had hoped I would have, and fear overtook most of my days.  

Step by step I walked out of that place, I worked to overcome those challenges, I leaned on the supportive people in my life, and I got back out there.  And I talked about it.... blah blah blah... you already know, I talked.  Blogs, youTube, radio, TV, magazines, speaking appearances, more blogs: it gave me something constructive to do with my cancer experience.  When I realized that there were others like myself, others navigating an advanced melanoma diagnosis with the same mysterious dark cloud over their future, I wanted to share.  I wanted to reach out and help them know they were not alone, and I wanted them to tell me it would be okay too.  Which they did. And still do.

Now I have the honour of being able to help others through their skin cancer journey on a grand scale.  I will go to Australia, attend the World Congress of Melanoma, fill my brain with all the latest news from the world leaders in this field, and bring it back to Canada in the form of reports from Save Your Skin Foundation.  Not bad for a humble little patient like me... as if I'm not already grateful enough just to be alive.  

Thank you Save Your Skin Foundation, for bringing out the best in me, and for encouraging me, now that I live permanently outside my old comfort zone.  Thank you for posting my first guest blog, it all started here:

 

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 :-)

CT Scans clear, and blue skies ahead

Two months since I have last written here - that is a record.  Not one I'm proud of, geesh, blog neglect tisk tisk! 

Has certainly been a busy couple of months, being back to work has really kicked my butt.  In a good way for the most part - don't get me wrong - I love my new job!  The people I get to work with are inspiring, caring, intelligent, and the work we do is real.  We are working together to try to improve cancer care in Canada, by way of fighting for patient access to immunotherapy treatments that many people don't know are not currently provided in our country. 

My last post was the night before the conference I helped to plan in Toronto, the IO Network Patient Leader Education Summit March 31 - April 1, 2017.  I was nervous for it; our team had put a tonne of effort into inviting patient advocates from across cancer types to meet in person, to discuss how we can all work together to help save lives.  Long story short, the meeting went well, there were two days of exploratory discussions, and a solid foundation was built for future collaboration.  I will post more about it when we launch the Network website and publish the report from the conference.

From that busy weekend in Toronto, I went directly to my six-month oncology appointments at Sunnybrook: bloodwork, CT scans, exams and consult with the Boss, and another night in a hotel.  Though it had been six months since my last checkup I moved through the routine as if I had just done it the week before.  I fell into quick conversation with my friend the CT Nurse with the twin girls close in age to my own twins, my backpack was light, my wardrobe was CT scanner-approved, and I got a good seat in the D - E waiting area at Odette. 

It was a pensive day for me, as it happened to be exactly three years from the day I first had my troublesome mole removed in Collingwood.  Three years to the day of my first surgery for melanoma, I lay in the CT machine, tears streaming... I walked like a zombie through the tunnel underneath Sunnybrook, and sat quietly waiting for my consult without any desire to read or fidget, my mind racing.

I have been struggling with many three-year milestones the last little while.  Three years since mole excision, three years since needle biopsy, three years since stage IIIb cancer diagnosis, three years since debilitating node dissection surgery, three years since I have become afraid of the sun, three years since my family has been burdened with my lot in life.  

Strange to be thinking this way, trust me I know, and it is not intentional.  Seriously - I can hardly remember my own postal code let alone random dates in April and May.... but these I remember.  

In any case, I got out of the city after that round of appointments, grabbed some pad thai for the girls on the way home, and snuggled in with my puppers to rid my soul of the trauma (and vats of tea to rid my kidneys of the CT contrast dye).  A couple of weeks went quickly by, I finished my post-conference tasks and got back into our home routine of being grateful to be alive (and not dwelling on the three-year mark), plus I had the distraction of facilitating a website upgrade/overhaul for Save Your Skin Foundation. 

 

The Easter Bunny came, and though I was spoiled with flowers and chocolate, I also got a call from my beloved family physician, with the news that my CT scans were clear.  No Evidence of Disease - YASSS!!!  Onward an upward my friends!  I got another six-month pass, therefore I get to cram as much life as possible into the time until September when I go back for the next round of tests.

And cram in life I have been, as evidenced by my lack of indulgence in personal time for my favourite pastime, namely, writing.  This is a particularly busy time of year for my family anyway, with Melanoma Awareness Month being May, my daughters' pending birthday, and the end of school year rush of deadlines, events, and then... high school exams.  

I have become acutely aware of my time spent on various activities, and I have noticed a change in my personal relationships as a result.  Some of my closest friendships have morphed into a sort of shadow of what they were before, and I am powerless to change that at this time.  I have several hand fulls of single parenting and home maintenance, work hours and physical limitations, taxi-ing to teenagers' events and jobs, not to mention my long-standing love affair with quiet alone time.  I believe this will resolve itself with time - I will either get better at it, or my kids will grow up and I will have a clean, quiet, peaceful empty nest.         Love you girls! ;-P

 

In addition to lots of inspiring work-work on my to-do list, I have a few posts planned in the coming days, one being about melanoma awareness month and the efforts I am supporting with regard to patient advocacy.  I am also catching up on spring cleaning and garden work - my beloved canine has (accidentally) compounded the damage done to the flower bed closest to my front door where the driveway gets snow-plowed in winter; poor plants don't stand a chance with him running through, I think I will plant ROCKS.  

I do have additional appointments on the horizon: head-to-toe with my new Dermatologist in July, ongoing thyroid surveillance, and in the second week of June I will be at Sunnybrook to sit on a Melanoma Patient Education Panel.  Will keep you posted!  

Thank you

Top 70 Melanoma Blogs - blog.feedspot.com - WOW! Thank you

I woke up to a poignant surprise today - my little blog was named #38 in the top 70 melanoma blogs and websites worldwide! 

I didn't know such a list existed, I simply write (whine) about my experience with skin cancer, and I read (alot) about others' experiences with skin cancer.  I feel a generous sense of community when I identify with others in my shoes, and I have made many friendly and supportive connections in the almost three years since I hit the internet post-metastatic-melanoma-diagnosis.   

I feel like I know many of the others on this list today, I read their blogs and I follow their journeys.  They help me in ways they don't even know.   So now to be named among them is an honour I can't even describe.

Please check out this blog and the list of experienced melanoma SURVIVORS living with the disease.  I guarantee each one will inspire and inform you, they will lift you up and they will teach you.  If you want to know anything about melanoma skin cancer, this is the list for you:

Thank you so very much Feedspot.com, for helping us all to share awareness of this serious skin disease.

A little by-product of making lemonade out of the lemons life handed me:

Hug a cancer survivor on #WorldCancerDay

February 4th is recognized as a day to commemorate those who have lost their battle with cancer, as well as to give hope and support to patients, their families, and survivors of the various forms of the disease.  World Cancer Day aims to save millions of preventable deaths each year by raising awareness and education about the disease, pressing governments and individuals across the world to take action. 

Claire asked me if we could do a photo for World Cancer Day again this year, and I was touched, I appreciate she wanted to celebrate this small feat with me today.  Here is her inspiration (and skillful photo editing):

(and on my wrist yes, is my new tattoo)

For me personally, it is a day to reflect on what is important to me, what I have accomplished lately, and how I can achieve my goals for the future.  It's also a good day to write a bit - I am tucked away in the master suite with pen in hand.  It's been a while... very busy few months being back to work and all; I'm still feeling my way around the balancing act which is life (most days thinking I will never make headway on that one). 

I've also been battling a severe sinus and ear infection for almost a month, including 15-day course of antibiotics, and - if you can imagine - it has made me even more cranky and anti-social than usual.  Not possible you say?  HA - take it from me, yes, its true.  

  

Unfortunately, one side-effect of my thyroidectomy is all the cancerous lymph nodes that went with it.  Like, literally went... they were removed.  That means my body is missing a section of it's lymphatic system, which moves stuff around, namely bad stuff that needs to get away from an infection in order for it to heal.  This is actually my second ear infection since August; I was not prone to them before, but now I have to be careful of any infections from the neck up. And well... from the neck down.  

It seemed that my super-boosted immune system (from the ipi treatments for melanoma) was warding off everything else too - for almost two years, I hadn't had so much as a sniffle.  Now I worry that it has worn off, is that a thing? and what does that mean for my melanoma?  Will it come back like the cold/flu?  My Mom says I'm just getting old, somehow that is comforting - before cancer I never thought I'd say that.

I'm happy though, to report that my kiddos are well.  They survived the first semester of grade nine in a new school; they have almost straight A's and a gaggle of new friends, plus unflagging spirits ready to tackle anything - everything - that comes their way.  They have been very helpful in the past few months as we have all been adjusting to my every whim, even though they have been fighting challenges of their own.  Don't worry, they are healthy, it's just some of the other stuff can be overwhelming; we all know it's not easy being a teenager. 

They still hold the philosophies reflected in our photos from last year's World Cancer Day, Scott too... I don't know how they all put up with me:

Happy New Year everyone, may 2017 bring you peace and happiness.  xoox

In response to this press release last week, I wrote below article for HuffPost: 

This article was originally called "Canadians Need to Know They May Not Get Available Cancer Treatments" but I digress....