Recent Media - it's still a family affair

For years Claire and Cass were by my side for awareness events and opportunities when we would share our story about how I was diagnosed with metastatic melanoma, and how it went from there for our family. Especially with Save Your Skin, we did many video and print advocacy pieces, often making the trip from Meaford to Toronto to meet with journalists and crews, SYSF staff, the La Roche-Posay team - anyone who would listen, really! - to raise the profile of skin cancer and the importance of early detection. The three of us were a melanoma-awareness-posse! And we had some great media hits in addition to my guest blogging for HuffPost, Her Magazine, Yahoo Canada, and others.

Claire and I on CTV News - Melanoma Monday, May 2016

In recent years the girls have taken a well-deserved break from that scene, and I placed all of my own advocacy and media attention under the Save Your Skin banner. 

Well... fast forward to the last two days - and Cass is now on CTV News as well! I've woken up at balls a.m. (stay tuned for more on my move from the centre of the universe Eastern Standard Time to Beautiful British Columbia Pacific Time LOL) to hold interviews with a couple of lovely media providers in Ontario to speak about the Sty-Lives (Styling Hair & Saving Lives) program.  And Cass, recently graduated from Marca College of Hair and Esthetics and now working at a swanky salon in downtown Toronto, jumped on board to help share the message. 

Early Monday morning we bravely prepared for a zoom interview together with two Physicians on CTV News Sudbury, and I'm proud to say Cass nailed it! She has a very firm grip on how to be successful in her chosen vocation and she works toward that goal every day, while maintaining her beliefs and bringing her personal experience to the job as well. Cass is an advisor on the Sty-Lives initiative, helping us shape it to be relevant to the Hair Professionals perspective. Of course she is also passionate about the program as it brings full circle our family's desire to increase melanoma skin cancer awareness. 

Enough of my talking about it - how about I just show you the interview recording!  :-)  Click here to watch:

The written article is also located at this link, though the video at the top hasn't yet been updated to our interview (at the time of this blog posting). An excerpt:

Toronto hairstylist Cassandra Richardson joined the initiative for a very personal reason, her mom is a skin cancer survivor. Richardson said she’s ready to help anyone who sits in her chair.

"I’m very passionate about prevention and early detection so this really means a lot to me in the fact that you can absolutely change someone’s life by simply doing your job," she said.

"It’s so easy with the instructional video that Miranda sent. Like it’s so easy to tell someone that 'you have a spot on your head, you should get checked out.' It doesn’t have to involve anything  more than that. Just that simple step of telling that person that it exists is just one step closer to saving their life."

Adding, "It’s just so easy. There’s just no excuse not to do it as a hairstylist."

Atta girl Cass!  #ProudMomma

In addition to the above coverage, Global News Radio 640 Toronto picked up the story on Tuesday, and I had the privilege of speaking with Kelly Cutrara about Sty-Lives and skin cancer detection. Check it out here:

The recent story of hockey fan and medical student Nadia Popovichi who alerted a Vancouver Canucks equipment manager about a cancerous mole she spotted on his neck while at a game has gone viral and is helping to highlight the importance of early detection.

I'd like to say thanks to these media networks for sharing news of the Sty-Lives program, and I am happy to report that registration from hair salons across the country is growing very rapidly!  I'll keep you updated on the progress, and in the meantime please feel free to share this link and video with your Hairstylist or Barber:   

https://saveyourskin.ca/sty-lives/

Thank You!

My work at SYSF, explained

A few years ago I posted about finding this group called Save Your Skin Foundation (SYSF), founded by BC-based melanoma survivor Kathy Barnard, and all about how Kathy and the SYSF team helped me through my cancer experience.  (Click here for a quick re-cap: "Queen's Park Yesterday")

Since that time I volunteer-blogged for SYSF, and was a Spokeperson for them at Ontario events and then nationally, until I felt well enough to go back to work, knowing I needed to do something meaningful with my career and help others the way SYSF had helped me. I badgered Kathy into hiring me part-time as a Project Coordinator, and off we went! 

I tested the employment waters for about eight months, got my legs back under me, and then moved into a full-on Director role in which I have been working for the past five years. As you know, that didn't leave me much time to write on my blog - but it's okay - I was able to pour all of my creativity and combined professional skills into my work at Save Your Skin, and I love it. Love working in this field, though stressful at times, I am proud of what we do, and I endlessly appreciate my mentor and friend, Kathy.  

Recently we were both interviewed for a joint article for AIM at Melanoma in the States, and this write-up took me right back to how I felt about Kathy and SYSF six years ago, and it is still how I feel today:

From Survivors to Advocates: Two Leaders are Pushing for Progress in Canada and Around the World

It is true that the Oncologists on our team joke with Kathy and I about how they help save melanoma patients and then Kathy hires them.  Kathy saved me - then she saved my career, and then she saved my love life LOL!  (More on that later - as I mentioned, Mike is a melanoma survivor and he has long been a Spokesperson for SYSF, and that is how we first met and became friends years ago. 😊 )

Many of my family and friends have asked me over the years "what IS your job?" 

I can explain. It is oncology patient support and advocacy across Canada. Helping patients like myself navigate the health care system, figure out - and access! - treatments, support them through the emotional and sometimes financial hardships of a skin cancer diagnosis, inform them about their disease and options, and simply in general BE there for them.

In the last five years, along with the Team and Board and Medical Advisory Board at Save Your Skin, I have supported the Foundation's work by:

• facilitating 14 educational webinars on melanoma, non-melanoma skin cancers, and ocular melanoma 
• hosting two fund raising Galas in Toronto, and one virtual one (since covid)
• attending the Canadian Melanoma Conference in Banff three times
• traveling around the world to attend conferences such as the Society for Melanoma Research Congress, European Post-ASCO Melanoma/Skin Cancer Meeting, CureOM Science Meetings and Patient Symposiums, Society for Immunotherapy of Cancer, European Society of Medical Oncology, and many more - next post is all about these! (Travel to all the conferences helps us learn all the latest news in skin cancer and advocate for the best treatments to come to Canada)
• representing SYSF and working with many Canadian and international groups to endorse and support work in the field of melanoma skin cancer research and support, including being on the cover of the newest National Comprehensive Cancer Network® (NCCN®) Patient Guide for Melanoma. True story:

• writing content and guiding awareness and support initiatives in all aspects for the SYSF community across Canada - annual Melanoma Awareness Month, Cancer Survivor Day, press releases, city proclamations, media opportunities, development and publishing of video productions, educational materials, blogs, newsletters, countless patient/caregiver meetings and roundtables, the list goes on...

Below are a bunch of photos of my work in the last five years.  

To kick those off I want to show you our newest video - among other items, most recently we launched a project about which I am very proud and excited: Sty-Lives - Styling Hair and Saving Lives.  (You may or may not know my Cass is a Hairstyling Apprentice, graduated from Marca College in Toronto, so she was a contributor on this project.)

Sty-Lives is being rolled out across the country by a team of Medical Student volunteers, plus our SYSF staff and supporters, to hair salons and barbershops for the education of hair professionals to help detect suspicious spots on clients' heads/ears/necks, encouraging them to seek an appointment with a Dermatologist for professional examination. All salons are eligible to register for this free program, so if you'd like more information or for me to mail you some materials for your salon, email me or let us know, here:

https://saveyourskin.ca/sty-lives/

And here is the video:

***

Collection of photos  - just some of the many friends I have made and experiences I've had along the way.  Enjoy!  

Giving Hope Gala

<--- oh and there's Mike! :-)

Move for Melanoma Annual Event

Global Coalition - Melanoma Research Foundation, U.S.

           ( and you might recognize this guy... --->  )

Conferences and Roundtables

MI-PAC - AIM at Melanoma, U.S.

And some random shots from over the years at the Cdn. Melanoma Conference at the Banff Springs Hotel:

And a random selection of our materials:

Thank you Save Your Skin Foundation, I love you! 

Save Your Skin Foundation (SYSF) is a patient-led organization dedicated to the fight against non-melanoma skin cancers, melanoma, and ocular melanoma through education, advocacy, and awareness initiatives across Canada. SYSF provides a community of oncology patient and caregiver support throughout the entire continuum of care, from prevention and diagnosis to survivorship.

Blast from the Past

A few weeks ago I had major surgery - unrelated to cancer, not to worry - and I can't help but notice how the whole experience took me right back to 2014 when I got a diagnosis of advanced melanoma. If you know me from those days you will remember my tales of traumatic surgeries, bizarre post-op procedures, life-saving immunotherapy treatments, and all that goes along with. 

It is a head space that a cancer patient may endure for all or part of their journey, or they may go in and out of it as the situation strikes - our "Cancer Companion" as my therapist called it. When your Cancer Companion taps you on the shoulder, you may need to sit with them for a while, work through it, maybe hear them out, maybe tell them to piss off, but they will choose when they may leave again or come back. Might as well keep the kettle on the back burner as you never know when they could drop in for tea.  

My cancer companion has found me here in my new home in northern British Columbia, where for the last few months I prepared to have a full abdominal hysterectomy.  One benefit of regular CT scans for surveillance of melanoma (I have been N.E.D. for six years but will be monitored for life to check for recurrence) is that things can show up that one may not have know about otherwise.  I have had some trouble with my "lady plumbing" for a couple of years now, nothing too crazy, or concerning enough to look into - I kind of assumed it was just related to peri-menopause. My Mom seems to get a particular chuckle out of telling me that I am "at about that age." Thanks Ma LOL

But when my new GP reported that I have lots of fibroids in my uterus, and we cross-referenced that with my ongoing situation of low iron/hemoglobin which has led to anemia, it seemed like the time had come to investigate further. I had been having some new tummy pains on top of the monthly aggravation, and some early steps to helping the anemia did give me more energy, so I agreed to a consult with a Gynecologist.  45 seems like a good time for a tune-up, right? 

I'll spare you the gory details, but the Gyno did her exams and biopsies, and gave me a thorough and much-appreciated presentation on my options for remedying a fibroid uterus.  Given all my variables a full hysterectomy sounded like the right option. 

So I signed the consent forms, remembering all the paperwork I filled out to take part in the clinical trial at Sunnybrook in 2014, and sat back to relax until my year-long wait for a surgery date would come to fruition (thanks covid, for the extra delays in our health care system).  On my way out of her office, the Gyno commented that if I was to end up in the hospital or have a blood transfusion to let her know, as that could shorten my surgery wait time.  

Weird, I thought... why would I have to have a blood transfusion?   And went on with my day. 

Fast-forward a month from that time, to a night in early November. I was having a particularly tough time with my "cycle," and was taking a new-to-me drug from the Gyno to help with that. Apparently weird reactions or allergies to random drugs runs on my Mom's side of the family, and I ended up in the emergency room at 3am with the most severe abdominal cramping I have ever experienced. Like - worse than be in labour with and give birth to TWINS bad.  

Poor Mike - my loving partner and reason I moved here to Prince George - not an ideal time to introduce you to this fabulous man, but I digress... Mike sped me to emerg (he happens to be an epic race car driver, actually) and advocated for me when I was unable to speak (Mike is also a melanoma survivor - he takes no guff!). 

An hour or so in, bloodwork assessed, morphine running through veins, x-rays inconclusive, I was able to speak to the doctor while we waited for an emergency CT scan. She said my hemoglobin was dangerously low (hhmmm where had I heard that before..?) and she wanted to give me a unit of blood while we wait to see if I would need some sort of surgery or procedure to deal with this mystery lower-abdominal pain.  

A blood transfusion? Must admit, that freaked me out. Not only did I feel that those are only for people in accidents or emergency situations, I was a bit weirded out by the thought of having someone else's blood given to me.  If you recall, I have always been a supporter of blood donation and always wanted to give it - but it never occurred to me that I would ever be on the receiving end. 

I'm happy to report that they were very careful about the procedure for this, testing my blood again for some sort of matching criteria, blood type etc., and then giving me a special green band with a code to match the labels on the pint that would arrive soon as my new gift. I was nervous but grateful. 

Long story short, two nurses arrived and read my bracelet codes aloud and triple-checked the green card on my new blood, it went in via IV for an hour or so, I had my CT scan (which was also inconclusive), and I was sent home.  The mystery pain had disappeared, and I was repeatedly assured that nothing on the xrays or CT showed any masses or problems that could be related to melanoma, which I was pretty confident was right as I had just had my melanoma-surveillance scans a few months prior.  As far as I know the pain was caused by my weird and apparently uncommon reaction to the tranexamic acid. In any case it was gone, and I was home, exhausted, and with a couple days off work to recover. 

One result of this however, was a phone call to my Gyno to let her know I had had to have a blood transfusion, and a subsequent iron infusion, so.... poof that got me on the emergency surgery list and I was scheduled for mid-December.  *gulp*  Surgery, full on. The goal of this hysterectomy is to get rid of the fibroid uterus, and with it any chance of random crazy pains, but also to stop the extreme monthly loss of hemoglobin and give my body a chance to fix the anemia.  

So here I sit, 3.5 weeks post-op, comfortably tucked in and recovering well in the grand scheme, pampered by Dr. Mike. Can't help but have some mega deja vu though, after a major surgery with all that time to stare at the ceiling between pain-med-induced naps I couldn't help but remember all that I/we went through years ago.  And I have the exact same feeling of that in-between and frustrating phase of starting to feel better but still not being quite up to snuff... no driving, reduced work capacity, etc. This surgery requires a full eight weeks recovery, no heavy lifting and all that stuff.  No snow shoveling either - bad timing with this PG winter! 

While I rest and recover, figure out some adjustments in my career (more on that later), and reflect on "life after cancer" I find myself here, blogging.  Hello old friend!  If you only knew how much credit you deserve for getting me through 2014-2016 wowww... you are amazing. I think of you all the time but never give us time to spend together. Well guess what - 2022 is our year. :-)  

Might have to re-name this blog to "Menopause, Melanoma, and making it to my Maserati"  haha!  But we shall see... and of course I'll keep you posted.  My desire to share (bitch about) medical experiences is never far from the surface, and of course has served as a perfect segue back into writing here on my blog.  Thanks for reading! (apparently I have not lost my long-windedness)

And thank you to my gorgeous grown-up girls who have been a huge support from a distance.  It was weird for us to be so far apart during this recent hospital event, when they were so entwined in the past. But they are excelling at their exciting Toronto lives, and we are always connected by skype (yes, people still use that), TikTok, and bank account haha.  They connected with Mike too - I suspect they warned him of my post-surgery whiny-ness and consoled him by text, though he is a champ caregiver and claims I was angelic and wonderful. Ahh love... 😇 😍  Thank you Mike 💖