Melanoma Blog(s) Updates - a Quick Check-in

Every year around this time I get a bit twitchy about my upcoming cancer-versary, it's soon annual CT scan time, and so I need to stop and smell the roses. Many amazing things have happened in my life in the last year, it's really been non-stop around here - all good stuff! And never a dull moment. Mike and I travelled around BC a bunch, including a raucous Camaro trip to the Kooteneys, and a stunning camping trip to Bella Coola. 

Also news: Claire and Cass moved here to Prince George (haha right - I never thought I'd say those words!) and are settling in beautifully. I of course am thrilled that we are back to living close to eachother!!! They are loving PG and immersing themselves in their new city.  We're slowly but surely getting their Toronto-blood-pressures down, and the imminent spring weather is going to greatly help that when we can get back out there for camping, exploring, and adventuring. 

In the meantime... work. Mike and I both have been burning the candle at both ends the past couple of seasons. Mike worked BC Elections as he loves to do, and then took on a side gig here in town to help him pass the winter (aka non-Camaro) season. I've still been working with Community Futures but also was part of a Scientific Planning Committee (my first one!) to bring a two-day accredited for Physicians hybrid conference to Prince George for Lymphedema Education. It was a large undertaking and I am honoured to have been able to support this event with my conference planning skills. Not long after that, I was part of the team who brought the B2B Expo to the Prince George business community - another large project I am proud to have been part of. These recent refreshers have reminded me how much I love to plan and facilitate corporate events, and how my professional efforts need to swing more in that direction. 

Sprinkled in between all of that was also a little bit of time with Save Your Skin Foundation! In February, SYSF invited me to host their Fireside Chat and speak on the topic of "Connecting to Your New Normal." It did stretch my cancer patient muscles a bit - I dusted off some decade-old feelings about this disease and shared my story and perspectives on life after cancer, hopefully giving even just one person a glimmer of hope in their skin cancer journey. 

SYSF has now posted the recording of my talk, and a short blog re-capping my melanoma and Save Your Skin story. You can check these out here and here: 

SYSF February 2025 Fireside Chat: "Connecting to Your New Normal" 

with host Natalie Allan, Cancer Survivor & Motivational Speaker

Thank you Kathy and Save Your Skin Foundation, for being there for me, and for Mike, our families, and all of the patients and caregivers your life-saving work supports in the cancer community. 🙌

I'm grateful to have some re-connects with my melanoma friends and family, and these opportunities help me to pause and reflect, and celebrate almost 11 years since I was first diagnosed, and I am HERE. 🙏 xoxoxo

🧡

One more quick note before I dash off to the next thing - just this very morning I received an email from Feedspot notifying me that my blog was again on the Top Melanoma Blogs list! Surprising as I haven't posted as much since last receiving this honour in 2017, but a very welcome nod and neat timing as I was just preparing to post about the SYSF event. Thank you @Feedspot - I appreciate #29 and will happily share your new badge. Great to see so many of my old friends and melahomies on this list as well! 🥰

A Year to Review

As I prepare to spend the next year writing a book and pursuing a career as a freelancer and advocate in the oncology space, I have been reviewing the multitude of resources collected in my cancer travels over the last nine-plus years. I am inspired to share the knowledge I have gained through my work, but also to re-visit it with the additional perspective I have developed since first being diagnosed with advanced cancer. 

Some resources I'll mention in the coming months you will have heard me touch on before, some might be familiar only to those who follow Save Your Skin Foundation (where I wrote about them but didn't share on my personal blog), and others will be completely new to all of us. I will be expanding on my experiences with these items, and in some cases, I expect my extended thoughts on the topic will reveal some new context. 

January is as great a time as any to kick off a new plan - I'll start with a plug for those who enjoy setting new years resolutions. An easy one for the year is to perform a monthly skin self-exam to stay on top of any changing skin spots, moles, or conditions. Our skin is our body's largest organ, and we need to check it to protect it. Set a reminder in your calendar, google, or Alexa, and/or align your skin check with the full moon every month - easy peasy!  (Just saying... if I hadn't neglected my weird mole all those years ago, I wouldn't now be sitting here talking about metastatic cancer.)

Click here to learn how to do a skin check

Also in January, it is Children Impacted by a Parent’s Cancer Month (CIBAPC), in the United States.

I have set a plan for my blogging to align with a calendar of cancer awareness days for 2024. As you know, through my work I have inadvertently become an "unofficial expert" on melanoma and non-melanoma skin cancers, as well as ocular (or uveal) melanoma. Also having had a simultaneous diagnosis of thyroid cancer, and becoming extensively familiar with the treatments for all of these, as well as related conditions and topics such as lymphedema, gene testing, and treatment side effects, I will share news and insights on each of the ones I feel equipped to speak about.

You may have already noticed I added an image with a link in my blog sidebar to the right showing the I Had Cancer calendar for 2024. This calendar is the most comprehensive of its kind, that I've seen. I Had Cancer is an online patient support community I have been a part of for many years, wrote a blog for them once upon a time too. I'm inspired to share their excellent resources and to be able to do so on a wider array of cancer indications and related topics. 

My journey with melanoma skin cancer has many similarities to that of folks with other cancers, so I will speak to that throughout the year. 

Also, I realize that you know people other than myself who have cancer - it isn't all about me.... so you may find some interesting information and additional cancer resources such as awareness months/days and ribbon colours, and support resources for a wider community.

This calendar is free to download so if you'd like a copy you can click here to get it. I'll keep it in the sidebar this year and refer to it in upcoming posts, but also please feel free to get it and share with your family and friends. 

Why do I feel cancer or health-related awareness activities are important? For the same reason I still write about my journey almost ten years after it began: to be part of a community of support. When I was first diagnosed, I felt very isolated, filled with fear, and like no one understood what I was going through. When I started to research melanoma and found people who had survived it, I felt hopeful. They helped me, and now I can help others.

Everyone everywhere who is diagnosed with any life-changing disease or condition goes through a unique and often terrible range of emotions as they learn about their condition, their "new normal" - or wonder if there will ever be anything "normal" again. Cancer, diabetes, MS, heart disease, lung disease, Crohn's, lupus, hepatitis - too many to list. We all have something. And, pack animals that we are, we often find comfort in engaging with others who are in the same community. It is part of coping, learning, sharing, and giving back.  

Another great resource for patients and caregivers includes the National Comprehensive Cancer Network® (NCCN®) Guidelines on melanoma and non-melanoma skin cancers, and many other indications, as well as supportive topics such as immunotherapy or treatment side effects, mental wellness, and survivorship.

I wish I had had NCCN® guides for melanoma and thyroid cancers back in 2014-2015, though these have been newly developed in recent years. Through my work at SYSF I got to research and endorse many of these guides, and provide patient quotes from our community, and somehow my little face is even on the cover of the 2021 melanoma guide. That is how much I love these guides and recommend them to patients and caregivers. 

(Clicking this image will take you to the most current 

Melanoma Patient Guide from NCCN, updated in 2023)

Though these guidelines are developed with best practices in use in the United States, the resources do apply to patients and clinicians in Canada (where treatment options and access apply), as I have personally confirmed with members of the SYSF Medical Advisory Board. Canadian doctors do refer to the NCCN® clinical guidelines, and they do support the distribution of NCCN® patient guidelines to Canadian patients.

Plus - the other day when I was researching NCCN® updates I found they have published a new guide on thyroid cancer in late 2022! This is exciting, as I have never really understood the details of my thyroid cancer diagnosis. I knew I had papillary thyroid cancer, and that they were happy the tumour wasn't melanoma, so I had a complete thyroidectomy and radioactive iodine treatment. That's kind of it. Until now - I just finished reading this and I'm clearer now on more of my details. Check it out: Thyroid Cancer

Also please feel free to see other NCCN® guides related to this community, including the Survivorship books, which contain quotes from yours truly: 

NCCN Guidelines for Patients®: Melanoma

NCCN Guidelines for Patients®: Squamous Cell Skin Cancer

NCCN Guidelines for Patients®: Basal Cell Skin Cancer

NCCN Guidelines for Patients®: Immunotherapy Side Effects series:  

Immunotherapy Side Effects: CAR T-Cell Therapy and Immunotherapy Side Effects: Immune Checkpoint Inhibitors

NCCN Guidelines for Patients®: Survivorship Care for Healthy Living and Survivorship Care for Cancer-Related Late and Long-Term Effects 

NCCN Guidelines for Patients®: Distress During Cancer Care

NCCN Guidelines for Patients®: Adolescents and Young Adults with Cancer

The Patient books are easy to read, well-illustrated, and are all available for free to view and print at NCCN.org/patients or via the NCCN® Patient Guides for Cancer App: Virtual Library of NCCN Guidelines® App – Available for iPhone/iPad and Android Smartphone/Tablet.  Keep an eye out for new guides all the time, they are ever-expanding. 

So there, that is my plan for the year - laid out in January - how organized! I'm also set for a couple of my own appointments in the coming months, including my annual CT scan in March. I'm also happy to be co-supporting, with a lovely group of inspired volunteers, an accredited 'Lymphedema Education Day' to take place later this year for Physicians and allied health care professionals in the Northern Health region. Stay tuned!

When things come full circle: OneWalk, Toronto

I'm having one of those days where everything seems ironic. In a good way.  This afternoon I am being interviewed for an article in the National Post, for a project that I have been working on behalf of Save Your Skin Foundation since last year.  We are working with the folks at Post Media to do a Spotlight on Immuno-oncology in the Patient Diaries series. 

Save Your Skin advocates for cancer patient access to life-saving immunotherapy treatments, and is helping to bring patients and the media together to shed light on this subject.  Patient Diaries is spotlighting some patient stories for the feature to run this Fall, so I shouldn't have been surprised when I got the call the other day asking if I would be willing to share my story for it.  Guess I kinda forgot I still am a melanoma patient (who received immunotherapy) - have been so busy living and working it didn't occur to me that they would want my story in there. LOL It will be neat to see this Spotlight come together from both sides, as a project manager from the inside, and as a patient interview on the outside.  Stay tuned for more info!

Another full-circle event is upcoming for me too - the OneWalk in downtown Toronto September 8, 2018.  Two years ago my dear friend Rhonda walked in my honour the fund raiser for melanoma research at Princess Margaret Cancer Centre, when there was no way I could have walked that distance.  Just finishing my treatments at the time, I was struggling with side effects and a difficult emotional cancer battle, and I was incredibly moved that she did that for me.  

That's Rhonda :-) -->

Now I am feeling much better, and I have been invited to walk 15km downtown Toronto with a team that has been part of my life for several years. You may remember me talking about La Roche-Posay, the sunscreen and skin care brand who created the "Become A Skin Checker" campaign and invited me to share my story at their Toronto awareness events. 

This year La Roche-Posay graciously accepted my request to become an official sponsor of Save Your Skin Foundation, and they donated a whole bunch of their excellent sunscreen to us for distribution at our events.  We are building further on the relationship by my joining their OneWalk team this year, to raise money for melanoma research at Princess Margaret (at which Save Your Skin closely works with melanoma oncologists on a regular basis).  

In September La Roche-Posay Canada and I will join forces again, this time to raise $15,000 for melanoma research.  A very exciting prospect!!  Being as I have the honour of working directly with lead melanoma researchers at Princess Margaret, I can assure you personally that the funds go directly where they are supposed to go.  I fully support this endeavour, and I hope you will too.  

To donate to our team, please click here: 

OneWalk.ca/goto/Natalie_Richardson

Thank you! 

More about La Roche-Posay at OneWalk Toronto 2018:

La Roche-Posay is a skincare brand committed to preventing and fighting skin cancer. Recent studies indicate that of cancers diagnosed worldwide are a form of skin cancer, which is why our mission to provide a better life for sensitive skin is more than ever. Developed in collaborating with dermatologists and toxicologists, our products contain only the necessary ingredients, at the right active dose.

To further contribute to the cause, we introduced an annual public service campaign in 2017 with the mission to inform the public about the dangers of sun exposure and the importance of protecting your skin from UV rays. This year, we are taking our commitment one-step further. La Roche-Posay is proud to be an official partner for this year’s OneWalk to Conquer Cancer™, one of Canada’s life-changing cancer fundraising experiences. Every year, thousands of walkers unite to take the streets of Toronto and challenge themselves to walk and raise vital funds for cancer research and care at the Princess Margaret Cancer Centre. 

This year, La Roche-Posay will be walking 15 kilometers and raising $15,000, which will go directly towards melanoma research. These funds will go directly toward supporting the Princess Margaret Hospital’s world-leading clinicians and researchers to detect cancers earlier, diagnose with more precision, target treatment for each patient and support patients and their families throughout the cancer journey.

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 

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

 

 **************************************

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:

 

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

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....

Understanding Your Pathology Report - SYSF Webinar

Last week Save Your Skin Foundation facilitated a very informative webinar with Dr. Alan Spatz, Director, Pathology Department, Jewish General Hospital & Professor, Pathology and Oncology, McGill University. 

To diagnose diseases such as cancer, a sample of tissue called a biopsy is taken from a patient and examined by a pathologist to determine if cancer is present. A pathologist will then examine specimens removed during surgery (resections) for conditions such as cancer, to determine whether the tumour is benign or cancerous, and if cancerous, the exact cell type, grade and stage of the tumour. The pathologist, who is a member of your medical team, writes the pathology report that your treating doctor uses to provide the best care for you as a patient. In this webinar, Dr. Alan Spatz,Director of the Pathology Department at the Jewish general Hospital in Montreal, will provide insight on understanding your pathology report so that you can play an active role in your treatment. (source: SYSF)

When I was newly diagnosed with invasive nodular melanoma, I did not know where to turn for more information about my disease.  I was "banned" from googling it, so I asked every Physician I came into contact with for an explanation of the bizarre-looking terms on my medical reports.

After watching this webinar last week I am happy to report that my Oncologists and Fellows and my Family Physician all explained my pathology reports very well.  Consistent answers have led to my thorough understanding of the condition of my melanoma and it's effect on my body, and this was all reinforced on this webinar Understanding Your Pathology Report.  

I highly recommend anyone diagnosed with skin cancer at any stage watch this.  It is detailed for sure, and may even be a bit intimidating for someone newly diagnosed, but you can always bookmark it and check it out at a later date.  

I particularly liked the diagrams of microscopic samples of the various stages of a skin cancer, include basal cell carcinoma, squamous cell carcinoma, and melanoma.  Also, this is the first image I have found on the internet of my type of nodular melanoma, the black one on the right (gross), though mine was larger and had an irregular border.  Blech. 

Anyway... the other details I found of interest was the explanation of HOW skin cancers are defined, and how the classification method for each of the factors that make up a diagnosis, are universal around the world.  All Pathologists use this method of defining each detail, ie. Breslow thickness (anything over 1mm in depth is considered invasive... mine was a 12.5mm).  

Please click here to watch, to register only your name and email address are required, then it goes right into the webinar: https://attendee.gotowebinar.com/register/4021315721502861060

Thank you yet again, Save Your Skin Foundation!

#MelanomaThroughMyLens - Huffington Post

Hot off the press!  Please check out my new article on HuffPost Living - Canada

Sharing My Melanoma Journey Through Photographs 

Please click to "Like" and "Share" - I appreciate your support!

#MelanomaThroughMyLens Reflection Project - Press Release

Canadians with advanced skin cancer share 

their disease journey in empowering photo series:  

Melanoma Through My Lens

Campaign aims to raise awareness about different forms of the life-threatening skin cancer and its impact on patients and their families

TORONTO – August 17, 2016 – In celebration of the 10th anniversary of the Save Your Skin Foundation, the organization, in collaboration with Novartis Pharmaceuticals Canada Inc., has launched a unique awareness campaign called Melanoma Through My Lens. The campaign centres around a compelling photo series, the Melanoma Through My Lens Reflection Project, which is entirely created by six Canadians from across the country, living with advanced melanoma, who creatively showcase their own personal journey with the disease – from diagnosis to today, through a unique photo e-book that is available online at www.saveyourskin.ca 

The campaign aims to kick-start a public conversation about advanced melanoma, the patient journey and to raise awareness about the various gene mutations involved with it to empower Canadians to know more about the disease. A change in a gene is called a gene mutation, which can disrupt normal development or cause a medical condition.i  The disease can vary from person to person because of gene mutations that may be present in melanoma cells, and that are unique to each person.ii In fact, melanoma is one of the cancers with the highest frequency of genetic mutations.iii While the BRAF mutation is the most common mutation in advanced melanoma, other known mutations include NRAS and c-KIT.iv  

“Every advanced melanoma patient lives their own journey in a very personal and profound way. The moment you get that diagnosis, it is life-altering for you and everyone in your circle,” said Kathy Barnard, Founder and President of the Save Your Skin Foundation and herself a 10-year survivor of the disease. “Patients and their families go through so much; it’s literally like a roller coaster ride. When I was first diagnosed I felt alone. This is why I created the Foundation in the first place. Through this campaign we want to raise awareness of the advanced melanoma journey and let other advanced melanoma patients know they are not alone.” 

Know Yourself, Know Your Options

Melanoma is the deadliest form of skin cancer, accounting for an estimated eight per cent of cases of skin cancer in Canada but approximately 70 per cent of deaths from the disease in 2014.v  

If left untreated, melanoma can spread or metastasize to other parts of the body, such as the brain, bones, liver, and lungs and is known as metastatic melanoma.vi When it cannot be fully removed by surgery, it is called unresectable melanoma. Both metastatic and unresectable melanoma are forms of advanced melanoma.vii Until recently, advanced melanoma was a disease with limited treatment options and a poor prognosis.viii   

“Our knowledge of, and ability to treat, advanced melanoma has advanced significantly in the last few years, in large part because of our knowledge of different gene mutations that can cause the disease,” said Dr. Marcus Butler, Oncologist at the Princess Margaret Cancer Centre in Toronto. “Though the diagnosis is still devastating, these advances allow us to offer real hope to patients when they embark on this difficult journey. It is important for Canadians to know the disease they are dealing with, know their genetic make-up and know their options, which is where campaigns such as this play a key role.” 

Melanoma accounts for about three per cent of all new cancer cases, placing it among the top 10 cancers diagnosed in Canada.ix An estimated 6,800 Canadians were diagnosed with melanoma last year.x It is also estimated that in 2015, 1,150 Canadians died from their melanoma.xi   

For more information about melanoma and the different gene mutations that can play a role in the disease, visit www.melanomajustgotpersonal.ca and www.saveyourskin.ca

  

 

About the Save Your Skin Foundation

The Save Your Skin Foundation is a national not-for-profit organization dedicated to the areas of skin cancer and skin disease with a focus on education and awareness, supporting research and ensuring equal and timely access to treatment for all Canadians. Please visit www.saveyourskin.ca for more information.

 

SYSF Media Relations: 

Karran Finlay  

Save Your Skin Foundation

T: 778-988-8194 

karran@saveyourskin.ca   

References      

          
i Canadian Cancer Society. Genes and cancer. Available at: http://www.cancer.ca/en/cancer-information/cancer-101/what-iscancer/genes-and-cancer/?region=sk.

ii American Cancer Society, Melanoma Skin Cancer 2015, pg. 10, A.

iii Watson IR et a, Emerging patterns of somatic mutations in cancer, Nat Rev Genet. 2013 October; 14(10): 703–718, Author manuscript pg. 6, A.

iv National Cancer Institute, Melanoma Treatment for Health Professionals, 2015, pg. 1-2.

v Canadian Cancer Society’s Advisory Committee on Cancer Statistics. Canadian Cancer Statistics 2014, Chapter 7, Special Topic: Skin Cancers, pp. 77, Toronto: Canadian Cancer Society; 2014.

vi ACS Melanoma Skin Cancer 2015, pg. 26 B and 1, A. 

vii ACS Melanoma Skin Cancer 2015, pg. 42, A; NCCN Guidelines for Patients_Melanoma_V1_2014_pg1-108, pg. 76, A.

viii Kushnir I_The evolution in melanoma treatment as a reflection of precision-oriented medicine_ Pg1-5_2013, pg. 2, A.

ix Canadian Cancer Society’s Advisory Committee on Cancer Statistics. Canadian Cancer Statistics 2014, Chapter 7, Special Topic: Skin Cancers, p. 78, Toronto: Canadian Cancer Society; 2014. 

x Canadian Cancer Society’s Advisory Committee on Cancer Statistics. Canadian Cancer Statistics 2015, p. 25 and 47, Toronto: Canadian Cancer Society; 2015.

xi Ibid.