What's in it for me?

Well, it's been almost a month since the launch of the #NotJustSkinCancer video, and it has reached over 53 000 people on YouTube so far, with additional media coverage on radio, TV and in print. The intensity of the campaign is going to move on across Canada, with opportunities for other melanoma survivors to share their stories, and other audiences to be reached.  I will happily continue to watch it all from the comfort of my home.  

I have enjoyed being part of it, and I appreciate the amount of opportunity it has afforded my writing goals.  Everyone involved in this project has been wonderful, and I am grateful to have been able to share in it.  

I have also appreciated the other benefits I have received from working on this initiative:

• hopefully helping others to feel less "alone" than I did upon melanoma diagnosis
• education & advocacy; I'm not out of the woods, and my daughters are now at risk of a melanoma heredity, so I want to do everything I can to make sure there are treatments if and when we need them in the future (I never claimed this volunteer effort wasn't also for self-preservation!)
• being a good example for my kiddos: taking action about something I believe in ~ making lemonade out of my lemons
• for my writing career: I finally know what I want to be when I grow up!

And last but certainly not least:

• to see what I really can do ie. energy level, concentration, stamina

I have mentioned plenty of times how I feel that I am not the same person I used to be, especially physically speaking: my mobility is hampered, my leg is damaged, cancer/treatment weight gain plagues me, and I am struggling with the side effects of Reverse T3 hypo-AND-hyper-thyroidism.  

Add chemo brain on top of it all and based on my experience, I am not (yet?) fit to manage a cash office and payroll process for a large group of people who depend on me for accuracy, efficiency, resourcefulness, and quick-thinking.  

The kind of effort I have been putting into the #NotJustSkinCancer campaign is reminiscent of my professional work experience... conference calls, writing projects, statistics, a bit of commuting, public-speaking, organizing, committing to being specific places at specific times.  

I have accomplished a bunch of those items, but at a slow pace and usually from the privacy of home.  I could nap when I needed to, I didn't have to worry about wardrobe or mascara, or keeping a happy face when discouraged, anxious, or tired. 

I have enjoyed testing out my strength and steadiness, both mentally and physically.  Overall I have met most of the goals of my small part of the #NotJustSkinCancer campaign, but not without cost.  I am exhausted.  And I don't think I have really done that much!  Mental energy spent mostly?
It's strange, some days I have the energy of an ENTP Gemini Fire Dragon LOL  but then I am more like a hibernating (cranky) bear for a few days.  It is in line with my roller coaster experience with this disease from the start, but it is frustrating to be still living it every day.   And not to worry A, or anybody, it's okay, it's not irreparable exhaustion, it will be fine. 

I am motivated to keep pushing myself for this cause, for the reasons mentioned above but also for my peace of mind.  I am getting to know my "new self," figuring out whatever it means to say "new normal."  If I can again start running around customer servicing and being intelligent then by all means I will.  And I consider advocating for melanoma awareness a great way to test the waters.

The next few weeks still bring work in the melanoma awareness category for me, as May is Melanoma Awareness month here in North America(ish).  This weekend the girls and I will be in Toronto again for Melanoma Monday, on behalf of Save Your Skin Foundation, at the Become a Skin Checker event hosted by LaRoche-Posay.  

I will be sharing my story to help bring awareness to the importance of skin health and routine checking of skin for moles or irregularities that could prevent a late-stage diagnosis of skin cancer.  

My personal transition from #NotJustSkinCancer to #BecomeASkinChecker is an easy one, as it is all very close to my heart.  

After a couple of cool projects for Melanoma-Awareness-May I will be exploring a volunteer opportunity offered to me by The Cancer Society, participating in a very cool event in the Fall, right here in our southern Georgian Bay neighbourhood!  More to come on that... I can't talk about it just yet.  :-)  

In the meantime of course family life continues, and Sunnybrook appointments loom.  May and June always bring chaos but this year seems to be exorbitant: end of school year, projects to tidy up, 4 birthdays to celebrate, summer jobs to find for 2 teenagers, 3-day trip to Ottawa for their entire Grade 8 class, and... drumroll please... Grade 8 GRADUATION.  Buckle up folks, I'm gonna be a wreck. 

LOL!!

Me, Guest Blogger! HerMagazine.ca - Parenting While Fighting Advanced Melanoma

I am honoured to say that I was asked to write a guest blog for Her Magazine, about my experience with melanoma and how that has impacted my role as a parent.  The article also introduces the #NotJustSkinCancer video.  

Among all of the pieces I have written to date, this is one of my favourites.  It is honest, emotional, and, in consultation with my girls, it captures a personal insight into the last two years of life in our household.  Please click here to read my perspective on:

Parenting While Fighting Advanced Melanoma

(update 30-March-2018: sadly, Her Magazine has been retired from the internet, so the links to my articles there no longer work.  This article however, was re-published on HuffPost.  You can find it HERE - thanks!)

Thank you so much to HerMagazine.ca for giving the opportunity to share my story and that of the #NotJustSkinCancer discussion.  I love your site and the refreshing, informative, vibrant articles you share.   

Thanks also to the "contributing editor," you know who you are A ;-) - couldn't be doing this without you and your team.  Endless thanks to all who have embraced my participation in this project and enabled exploration of my passion to WriTe.  

Her Magazine is a lifestyle magazine for women that are smart, strong, successful and inspiring.

Launched in Canada in 2013, Her Magazine is the brainchild of Tal Srulovicz and Stephanie Kleiman – two 35+ aged women seeking authentic online content on issues that really matter to their demographic.  

Their mission is to share tell-it-as-it-is content for women 35+ written by women 35+.

Contributors write about love, marriage, sex, life, womanhood, travel, work, money and health issues. It’s the stuff every woman really wants to read about.

PS - Please feel free to click on the article and share from their website onto your facebook/twitter/pinterest etc... it all helps share the message!  

Thank you 

 

(This photo is the first digital pic ever taken of us; Claire is on the left,
Cassandra on the right, Me with NOT-grey hair wink wink! ~ Elmvale Zoo, Sept. 2004)

 

Day 732

Here it is, the two-year mark since I was informed I have stage 3b nodular melanoma, an aggressive form of skin cancer; with Breslow depth of 12.5 mm, Clark level 5, three mitoses per millimeter squared.  I have since learned what that means.  Bad news.

It was a clear sunny day, which quickly became dark, as my family physician explained to me that the sentinal node biopsy I had had the week prior showed metastases (spread of cancer) to my lymph nodes.  It was in my lymphatic system.  Even more bad news.  

Two years (plus a 'leap day') later: 731 days, 4 surgeries for melanoma, 8 immunotherapy treatments, 2 months on complete bedrest (9 weeks NO driving!), several missed events for 1 set of twins trying to keep on living during this battle, 9 CT Scans, 1 leg with lymphedema, 2 years away from work, a team of 10 physicians across 4 Ontario hospitals, 30,000 hits on my blog, countless emotional days spent in recovery later I am content to report that I can enjoy today with a feeling of peace that, upon diagnosis, I did not expect to feel ever again. 

Today I was invited to speak to a group of youth about the importance of sun safety, and I could not think of a better way to spend this clear sunny April anniversary.  Thanks to the Rocklyn Agricultural Society for inviting me to speak to Junior Ambassadors (Fall Fair) from around our region, about the importance of sun safety, skin health, and the serious nature of skin cancer, in that it is #NotJustSkinCancer.  

I was able to present to them the #NotJustSkinCancer video, as well as the Become a Skin Checker video which is a great representation (especially to kids/teens) of how to examine your own skin and that of your loved ones for dangerous-looking moles or potential problems.  The dalmatians are a fantastic way to give a visual representation to "SPOT Skin Cancer to STOP Skin Cancer."

I was happy to pass around the audience samples of sunscreen (which most applied to their noses and cheeks - it was so cute!) as well as the art piece I was gifted from the group filming the #NotJustSkinCancer video.  

They asked some great questions and I even ended up with homework to do!  I must get back to the group about "UVC" exposure, as we discussed broad-spectrum SPF and UVA and UVB radiation from sun rays, one student had heard about UVC rays as well - I promised I will ask the LaRoche-Posay experts next week at Melanoma Monday and I will get back to the Rocklyn Ag. Society with the answer.  

Thank you for the heart-warming way to spend an afternoon folks, and thank you for the flowers.  I will speak to you again soon!

As for the rest of the day, I am resting up from a busy week, an enlightening-as-always visit from The Warden --oops my Mom-- ;-)  and chillin' with the kiddos in the shade.  

Love and gratitude from me to you... thank you for being through 731 days and counting....      Thank you All!

And thank you to Claire for joining me today... "Daughter of the Year" as proclaimed by Cass  ;-)

PS - Today also marks 577 days since my diagnosis of papillary thyroid cancer, which was found in CT Scans for melanoma.

Day 577

All this talk about melanoma has almost made me feel badly about neglecting my other cancer baby: papillary thyroid cancer.  

577 days ago, a few months into my melanoma diagnosis, I was diagnosed with a second "primary" cancer, a tumor on my thyroid gland.  It appeared on my CT scans for melanoma and I was instantly referred to the head of Head & Neck Surgery at Sunnybrook, in late September, 2014.  I had surgery to remove the tumor - and my thyroid gland as well as 2 of 4 parathyroid - in December 2014.  

It was at this point in my melanoma journey I truly moved from the denial stage to a deep-seated fear.  

The painful needle biopsy of a lymph node in the base of my throat showed a metastases of cancer from a tumor (on my thyroid) to the surrounding nodes, but it confirmed that the cancer spread was that of a new type of cancer, not a melanoma.  Believe it or not, that was the good news.  

Melanoma spreads silently, appearing anywhere in the body other than its original site, but this... this was a new one.  Which made it "less dangerous" than that of a spread of melanoma.  And this is where my fear deepened.. my fear of melanoma that is.  

Here I was, with a double-whammy of cancer (which is now a source of wary fodder in our household), planning surgery and treatment of papillary thyroid cancer in between that of melanoma.  

For those of you who have been reading this blog all along, you understand why I have been so pissy.  For those of you who may be new to this blog.. please understand this is another reason why I have been so pissy! 

I thought I would re-cap the highlights of my journey through thyroid cancer, for anyone who may wish to hear more about it, or may wish to connect if they are in the same boat.  I had thyroidectomy in December 2014, I had radioactive iodine treatment in March 2015, I take Levothyroxine Sodium 200 mcg daily (one hour before coffee every morning!) for thyroid hormone replacement plus TSH (Thyroid Stimulating Hormone) suppression (due to my intermediate-risk of recurrence).   

Today's melanoma anniversary also marks the time that I would be able to become pregnant again should I so wish to do (which I do NOT); I signed a contract saying I wouldn't become preggers for a year after I-131 Radioactive iodine treatment as it would harm a baby.  I am now deemed clear of said radiation.

In any case, here is a re-cap of links from my thyroid cancer journey since September 2014:

Well... THAT happened.

Dreaming of morning coffee on a sunny day

Lymph Nodes

Radioactive Iodine Treatment, Part 1

Low Iodine Diet

Highs/Lows of my 2-week LID

Radioactive Iodine Treatment, Part 2 

Radioactive Iodine Treatment, Part 3

Life After Thyroid Cancer 

Nuclear Medicine Scan - Thyroid 

PS - the 577 days was slightly more difficult to calculate than the 732-day(2 year) melanoma anniversary, so I used a little calculator site. 

Gratitude Fuels My Determination - Column - Meaford Express - Simcoe.com April 2016

My family and I have been cared for through my cancer experience by countless members of our community, and I can now begin to try to give back.  

I am immeasurably grateful for all of the messages, letters, cards, gifts, flowers, meals, rides, care for the girls, snow removal, shoulders to cry on, kicks in the ass, patience with my anti-social behaviour, support of my writing efforts - my family, friends, and community members are the most fantastic people anyone could have by their side.  

Thank you for everything!

I am pleased to announce that I have been asked to write a little column in the Meaford Express, rather online Metroland Media - Simcoe.com.  My first column is published today, woweee!  

I write all the time but I still have so much to say.  I plan to talk about my experiences with melanoma of course, but also thyroid cancer, as well as local cancer-related events or tips for caring for a cancer friend, or how to quell the crazies while in treatment... please keep an eye out for it! 

For my first one though, I knew immediately what I wanted to say.  Thank you. Thank you! Thank you my dear generous loving community, my family and I are grateful for everything you do and have done.  There are plenty of examples around town of people helping others, and I am grateful to say I am one of them.  And I plan to return the favour!  Somehow... I will.  

Gratitude Fuels my Determination 

PS - For anyone who may be curious... this is a guest column, and as such, is an UN-paid position.  I am still employed, but remain on medical leave until such time as I am able to return to work.  All of this writing is for voluntary advocacy, hobby, and/or catharsis.  Any questions or complaints please feel free to contact me directly at natalie.richardson@gmail.com   Thank you.

Meaford resident helping raise awareness of the dangers of skin cancer

And the PR continues... :-)  Great for the #NotJustSkinCancer campaign!  

(I promise I will get back to writing about the usual stuff shortly) 

This week's edition of The Meaford Express has an article about my experience with melanoma and the #NotJustSkinCancer video.  Please feel free to check it out, I feel Chris Fell captured our story very well.  Here it is:

  Meaford resident helping raise awareness 
of the dangers of skin cancer

This Editorial also accompanied the article: http://www.simcoe.com/opinion-story/6481706-skin-cancer-awareness-is-important/

Thank you!

Me, Guest Blogger! Huffington Post Canada - It's #NotJustSkinCancer

I am proud to be part of the #NotJustSkinCancer campaign.  It is an excellent launch for discussion of the complacency in social media about sun safety (or the lack thereof) and skin cancer.  It also provides a message of hope for those already diagnosed with this silent killer.

Every day I deal with the pain and side-effects of melanoma, as well as the stigma of "Just Skin Cancer."  I am happy to share my perspective on that to change the perception of this disease - It is not JUST skin cancer, it IS skin cancer.  I wish to share my experience in order to prevent others from traveling the same journey my family and I are on. 

Thanks to the collaboration of the PR team behind the video, as well as Save Your Skin Foundation and Melanoma Network of Canada, I was invited to share my story on Huffington Post Canada.  Yes... Huff Post... I have finally stopped hyperventilating...

Please feel free to check it out and to "like" and "share" it - thank you for your support in helping to spread this message.  It's #NotJustSkinCancer

#NotJustSkinCancer and ME - Rogers Daytime TV, Barrie - April 5, 2016

Yesterday the girls and I zipped to Barrie for a press opportunity to help promote the #NotJustSkinCancer campaign.  I am passionate about this video and I will talk about it to anyone who will listen!

With gratitude, I can report that the live daily cable TV show Daytime in Barrie, Ontario, was happy to share our story.  

In the wake of the #NotJustSkinCancer video launch, I was invited to put a local face to the issue of sun safety and melanoma awareness.  In case you have not yet seen it, the video, a collaboration of Save Your Skin Foundation and Melanoma Network of Canada, is here:

Yesterday, Claire was the official family photographer, and Cass helped keep us all "cool."  

When we arrived we were guided to the "Green Room" and I signed my speaking agreement on Rogers behalf.  We freshened up in the ladies' room, and snooped (just a little!) around the hallways, taking great interest in the giant glass wall tinted black behind which we could make out the blinking lights and multiple monitors of what we figured to be THE Control Room.  Neat!

We hung out in the green room with other guests, one of which I was to learn is living with a stage II melanoma diagnosis (although that is not why she was to be a guest on the show).  We watched a vocal group warm up, and got to know some details about the Re-Store chain/group, from fellow guests in the studio to talk about Habitat for Humanity.   

It was a very casual atmosphere and we were nervous but comfortable at the same time.  

The hosts Jeff and Jennifer came in separately to introduce themselves and briefly discuss the nature of our imminent interviews.  They were both warm, friendly, and funny!

I was assigned to Jennifer, so we had a quick chat about the purpose of my interview; she was educated about the topic and quickly grasped why I wanted to speak about it.  She was also successful at reassuring me not to be nervous.  

Just before she left, she turned to Claire and said "And are you the one who saved your Mom's life?"  Claire beamed and I almost burst into tears.   

Yes.. yes it was Claire who forced me to show our family doctor my "Just A Mole" almost two years ago to the day.   They had a quick chat and I was pleased that the lovely Daytime host had read my story closely enough to pick out that detail.    

Five minutes 'til showtime came and we were escorted to the studio, where we all sat on a large sectional couch equipped with our microphones, waiting for our respective segment interview times.  We got to watch the whole show right across from where Jeff and Jennifer were being filmed LIVE, very neat process!  

Claire snapped photos of the set, cameras, lighting, the interviews, everything.  She even noticed how the camera guys were moving their focus and putting the shot on the monitor somehow.  She got photos of my interview with headlines on the screen!  My BLOG was on TV LOL - I was amazed when I got home and saw the photos she took.  

I think the interview went well, I said everything I wanted to say, bringing focus to the #NotJustSkinCancer campaign, why we want to discuss and eradicate complacency in social media about sun safety and skin cancer awareness (or lack thereof).  I even managed to discuss the lovely Save Your Skin Foundation and their initiative Melanoma Connect, as well as the Melanoma Network of Canada.
  

My total interview time was 7:34 but it felt like 60 seconds!  Thankfully Jennifer made it easy for me to answer questions and if I hesitated on anything she skillfully glossed over it and directed me into the next question.  Very cool, I remain impressed.  At the end she patted my knee and said "You're great!"  

Thanks to the PR powers behind this campaign, I have been provided the link to share, here is the show should you wish to see it:  PLEASE CLICK HERE

Here are a few more photos of Rogers Daytime studio action.  Thanks to Claire for the pictures, and a heartfelt THANK YOU to Rogers TV for giving me the opportunity to share my story and that of the #NotJustSkinCancer video.  

Keepin' It Real

I always try to keep in mind how my blog appears to those who take the time to read it - thank you dear readers, friends, family, medical professionals, mela-homies, writers, publishers... ;-) 

Thank you also to my Grandmothery friends as well, who I know would prefer to hear my news and thoughts in person or by phone, but because they love me so much they read my blog for the scoops, as I ask them to.  Thank you all!  

With this in mind, I want to insert a little something to start the month off with my typical perspective, rather that just links to all of the other stuff.  And there will be more links... I have been asked to participate in a few cool projects that I will be blah-blah-ing about in the coming weeks. :-)

It is no secret that I am proud to be part of the #NotJustSkinCancer campaign, and I have been busy working my social media circuits to help spread the message.  

I have also been writing some guest blogs/articles for other sites - all of which will be linked from here of course.  I am happy to do some media interviews etc. as well, as it is all part of generating awareness of the #NotJustSkinCancer video, and in turn the message it was created to discuss.  

I knew it would be busy once the video launched, and I had prepared my family for a bout of writer-needs-quiet-time and that they'd be seeing only the top of my head over computer until I was done.  The freezer is stocked with frozen pizzas, just saying.  

What I didn't expect was the emotional response I/we have been receiving.  The texts, emails, facebook messages, tweets, phone calls, etc. have been amazing.  *humble thank you*

My friends and supporters seem just as shocked as I was to learn about the negative hashtags such as #SkinCancerDontCare.  

Complacency about skin cancer is scary, and crazy.  But I was there once, and not that long ago.  I get it.  

And yes, it is very emotional for me to react to the discussion in such a public way.  I want to spread the message and increase awareness about melanoma, but I still have the underlying emotional freakout every time I hear the word.  

It's okay though, that is the cathartic piece for me... that is where my passion lies right now: 

1. melanoma prevention 

2. support and friendship for those in the same boat as I

Yesterday afternoon I had a little meltdown.  Flaked out a bit, burst into tears and had to put the computer away for the rest of the day.  Scott patiently listened and poured me a glass of wine.  

I'm okay, just a bit messy over the gravity of the topic, excited about the success of the campaign launch, and a little tired.  Of course a bout of insomnia would hit me this week as well, why not!?

In the meantime though... the rest of life beckons.... 

Wednesday evening Claire delivered her speech in the French public-speaking event at the School Board office in Chesley.  She did a great job of course, this was her third speech at the Board level. I was so happy to be able to be there, as last year I missed it as I was at Sunnybrook receiving my radioactive iodine treatment in isolation.

We had plenty of time to reminisce about her speaking day at York University when she competed at the Provincial level of Concours in grade five.  This week she placed third of the six in her category - way to go Claire!  This year her speech was about what it's like to be a twin.  An identical, mirror-image twin no less.  

Cass and Claire in grade 5, when they both competed at the Board level

Another fun part of this week is that today is April Fool's Day.  Yes.... April Fools Day, and I happen to have a friend (who shall remain nameless for the purpose of this blog) who is a very thoughtful and dedicated PRANKSTER.  

My house apparently decided to dress up in an itsy bitsy teenie weenie yellow polka dot bikini last night!  The wind took some of it off, but that didn't foil my villainous friends' plan LOL!!  This is what we woke up to today:

And last year on April Fools day, my car:

And a few years back:

LMAO!  I don't have any photos of the pranks I attempted to pull off on my April Fools Day friend, not that you would see anything in the photos anyway. A few years ago I "forked' her lawn - stuck 300 plastic forks in her grass - only for it to snow! and cover up all of my handiwork!  I didn't prank my friend last night, the rain scared me away.  But I wish I had!! One day I will be back...plastic forks in hand... April Fools Day can be any day my friend... mark my words.  

Thanks for the smiles and laughter my friend.  
Thanks everyone, for keepin' it real around here.  xoxo