Toronto today

Many times over the years I have encountered that difficult catch-phrase "go outside your comfort zone!" --as if I don't do that regularly!?  If you think about it, everything is outside our comfort zone.  If it is comfortable, we already do it, and we do not feel the need to draw attention to it.  

For years I have been challenged at Toronto driving.  I have lived in cities yes, and I am reasonably adept at driving vehicles other than my little Civic, but Toronto driving is a different animal.  In the late 90's I drove myself to meet friends at the ACC for an Alanis Morissette concert and then booted my car all the way back to Cambridge without taking a single breath, considering myself lucky to be ALIVE after a trip to the base of the CN TOWER!  

Since then I have basically considered my life complete in my small town of three traffic lights.  No need to go further... I have explored Florence ITALY without panic - for god sakes surely I can close the chapter on "needing to accomplish traffic-related ambition" outside my "comfort zone!"

But nnnoooooo..... today I took a casual meander down to the Queen West neighbourhood in Toronto for a day of artwork, public relations, open-mindedness, and melanoma speak.

  

I left early this morning, drove down to 401 East to Dufferin/Yorkdale and followed Scott's perfect directions to downtown TO, drove straight to the building I was invited to, turned around a time or two to get a parking spot in a Green P lot, walked back through a neighbouring schoolyard as primary students were going to their outdoor recess (remarkably they looked a lot like my own country kids!?), and got a maple latte to accompany me in this supercool space, my hangout for the day:

(photo cred: click here)

Warmly greeted by the public relations firm hosting the event, I settled in to the old school-building converted to not-for-profit artists' space humming with activity such as a day care centre, a delicious cafe, art installation space, and rental studios such as the one I was in, on the 2nd floor.  

We were here to discuss melanoma, in a way new to me.  

There was a film-camera crew - a make-up artist even! - and a sound guy (who looks remarkably like a young Anthony Bourdain), A Director, and some patients of the little-known disease melanoma.  The patients were the stars of the day, and they were treated as such.  Oh wait.. I keep trying to forget, I am one of those melanoma people... shit.. 

One-on-one interviews were filmed and then a mixer of patients and artwork (it's all top-secret until launch in the new year) - all "Action!" and "Cut!" style until a yummy catered lunch.  Okay well there weren't really "action"s and "cut"s but there was a real little black and white striped clappy thingy snap in front of every take.  It was supercool.  Very interesting.  

Fast-forward to the highlight of my day:  meeting some fantastic people.  Not only were the PR people empathetic, knowledgeable, and truly interested in the project, the accompanying melanoma patients/victims/survivors were supremely awesome.   

I have mentioned before my struggle to meet people in the same boat as I am, melanoma-wise.  Well today I found myself in the company of some lovely folks who speak the same language as I do:  BRAF NRAS ipilimumab MEC excision node biopsy metastatic devastation gene mutation resection margins mass oh my! No need to clarify, we were on level plains.  

Film or no film, I have made some new friends, and even if we are not able to keep in touch I gained a feeling of power today that they may never know they contributed to, but that I will always be grateful for. 

I value their experience and their knowledge beyond words, and I am inspired by the fact that they were all standing with me in the same place, after being through worse battles than mine (really, I was the baby of the group, not in age but in melanoma incident... I have had five surgeries... these folks ran circles around me).  The most important thing:  they are still here.  They were in Toronto today as well, hoping to help others by spreading the word about sun-safety and non-complacency in skin CANCER.  

They were serious about their desire to help others fall short of the fate we have encountered, they are passionate about keeping people out of the sun in order to avoid the risk of developing melanoma. Melanoma. It is not JUST skin cancer.  It IS skin cancer.  

I will be sure to post news of the campaign launch as it comes available.  In the meantime I will email my new acquaintances (we all exchanged business cards) and lend support where I can.  Judging by how well we all hit it off I can envision us having a "cast party!?" when this launches LOL  I would even drive back down Dufferin to do that.  :-) 

Toronto traffic and camera-shyness aside, I feel today was a powerful day.  I received support and hope at the same time, plus I was able to explore the side of myself that I enjoy when I travel to new places.  

In fact in one of the alleys I traversed this morning I recalled Firenze as if it was yesterday. The light and air and temperature seemed the same in the Toronto alley I walked today, as it was in Florence eight years since this photo:

On the way home I casually noticed one pedestrian that I almost ran over didn't even flip me the bird!  Sure sign of my comfort in the Toronto traffic - after all these trips to Sunnybrook and other attractions I must be doing something right! 

Oh PS ~  All day when commenting on our unseasonably mild weather and asked if we have snow in Meaford I replied that "no we don't, as I requested we not get any snow until I was home tonight after this Toronto event." and we laughed... haha...  Seriously, the second I pulled into my driveway it began to snow.  My car is now covered and I am going to go to bed wishing for six feet in the morning.  I am done my work for a couple of weeks and I think we are due a white Christmas!  

PPS ~ Thank you Save Your Skin Foundation for connecting me with this great day 

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Another edit add-on to this post: I appreciated the warm-up conversation the film crew afforded my nerves.  When I told them I am from Meaford one of them said hey isn't there that cool restaurant up there in the middle of nowhere?  Teds Road something... I said Yes! Ted's Range Road Diner LOL  It's in a quonset hut style building and he serves amazing food.  So we talked about game meat and my history up north of salivating at every "Bear BBQ" in Barkway etc.  Anthony Bourdain Jr. said he did the sound for a film piece a few years ago at Ted's..? COOL!  So I just googled it and found this, perhaps it is the one?  Enjoy  :-) 

 

December

I have been taking stock of the losses and accomplishments my family and I have experienced in the last year.  

It occurred to me when I was at Sunnybrook on Monday, that a year has passed since my most dismal cancer-related days.  I had had my thyroidectomy at the beginning of December, missed Claire and Cassie's theatre production, had an extremely painful incision and infection around my throat, was on bed rest trying to recover, and was just barely coping with the task of adjusting to my impending to-do list... calcium supplements, thyroid hormone replacement drug, inevitable radioactive iodine treatment, continued melanoma treatments, and... smile for Christmas!

At the same time, we received so much love and support... a catered turkey dinner gift, a raft of treats and gift certificates from members of our business community, a huge tasty delivery from my silent partners (in crime LOL) at my place of employ, even help with snow removal as I couldn't even lift a shovel at the time.  The support was priceless, and it carried us through a rough time.  My gratitude remains, and I continue to convey it through small gestures as I am able.  I will return the favours if it's the last thing I do! 

Thankfully it appears I will still have some time to do so.  All of the work my medical team has done and all the chomping my personal pacmen have done have bought me some time.  My diagnosis at the beginning was pretty dismal - average time of survival for my type of situation is around nine months - but the speed with which the oncologists at Sunnybrook helped me (and the swiftness with which my family physician booted me to them) saved my life.  I sit here a year and a half after diagnosis contemplating my past and my future, and I am deeply grateful for that.  

On Monday I saw my surgical oncologist for a 12-month checkup.  She is a lovely lady, strikingly tiny, obviously intelligent, and very kind.  The last time I saw her was the day I was to get the staples out of my neck/thyroid incision (performed by a different surgeon), and I had to show her my right leg which was at the time six months post-surgery she had performed in May 2014.  That day we had set the appointment for this year's follow-up, and it felt like neither of us were sure I would see her again.  

I was looking forward to seeing her Monday, and surprisingly she came into the room smiling as well and with questions about my long drive into the city - she actually remembered me! We chatted for a bit, she examined the scars she had given me, and she slapped my wrist for procrastinating on the lymphedema therapy.  

Happy to report she did not feel any tumours or ominous tissue around the sites of my two surgeries (mole excision and lymph node dissection).  She then moved to examine the lymph nodes in my neck and I joked that there were 37 less nodes in there from last time she saw me and she commented back "well he was generous! How many did I take?"  I replied 13! (I can't recall my own postal code but these numbers are stuck in my brain)  "Hhmm," she said, "but I did more damage."  I told her it was okay, it was worth it.  I thanked her for saving my life.  And she smiled "don't thank me, it's a team effort."  How modest. 

We also discussed my CT scan reports of the last year, and I told her about the enlarged nodes in my neck.  She offered the perspective that the ipilimumab immunotherapy treatment I had been receiving was quite likely to affect lymph nodes.  Fair enough, that echoed my medical oncologists comments as well.  Surgeon also suggested that this treatment would wreak havoc on my thyroid (or lack thereof) situation, and she concurred that I should start feeling better in the new year as we move farther away from my last ipi treatment in September.  

All in all it was a good follow-up, and we agreed to meet again next December.  12-month check up with surgical oncologist, that is good.  I am still in the 3-month check-up zone with medical oncologist (melanoma) for a while, and still 6-months with endocrinologist (thyroid cancer related).  

I did my bloodwork and had meeting with medical oncologist on Monday as well, we had just seen each other four weeks prior so not much new to discuss.  So far so good! 

Did my CT scans Monday as well, and that went better than usual! I learned something new that day - you can put clear liquid flavouring in the huge jug of yucky chemical water stuff you have to consume prior to a CT scan.  I was being whiny to my favourite CT nurse about the water and she said well you can flavour it!  She squirted in some of her Mio orange-flavoured stuff and I was able to drink the whole bottle without gagging.   I told her she changed my life!  True story.  That's how much I hate that stuff.  

My tummy hates it too, and I was pretty much bed-ridden Tuesday after late return home Monday night and lots of bathroom stops, but I am feeling better today.  Which is good, because it is Christmassy-chaos around here, plus I have a big day tomorrow.  

Back to the city tomorrow: I am going for the filming of an interview with a team producing a video about living with skin cancer for the purpose of educating people about the dangers of frivolous sun-tanning.  This video is a collaboration between a pharmaceutical company and a couple of other teams, and it will launch in February.  I have been jotting down some notes on how to concisely express my perspective, Wordy-Me has to keep it to a few short seconds!?!

I have yet to be able to explain my feelings about the sun and how I feel about it's role in my life and also in my illness, but I am keen to share with others that they should not take risks when it comes to their skin health.  Sun-tanning for vanity or cosmetic reasons is not safe.  It can ruin your life.  I'm living proof.  

Speaking of  "I'm Living Proof," I am also working on a written bio and short video for the SYSF "Melanoma Connect" initiative to help melanoma patients find peers to help support them in their diagnosis and cancer journey.  Via social media including their new website "I'm Living Proof.ca" the folks at Save Your Skin Foundation are working to help people feel less alone in their melanoma diagnoses.  

It is indeed a frightening disease, and patients need every tool they can possibly embrace to help them through it.  I am part of this community and I will put my star on their map, perhaps to help someone recently diagnosed, but also to receive support myself as I live with metastatic melanoma.  

Otherwise around here things are running as quickly as always, the three girls and I put up our tree last weekend, yesterday I attended Claire and Cass' school Christmas Dance Extravaganza, today they are having their classroom gift exchanges, and tomorrow is their dance and continued partying at school while I venture to Toronto.  One cool thing, their homeroom teacher is showing them the movie One Magic Christmas, which was filmed in part here in Meaford in 1985. 

All in all this December is so far better than last December, different challenges lie ahead, but they are bouyed by hope and definitely ambition.  

Thank you again for your continued friendship and support.  Merry Christmas!

The "Quote Board"

One side effect of a kitchen renovation is that all artwork and wall hangings have to be removed for the new paint.  Everything has been gone from our space for a couple of months, and now it is time to unpack and survey possessions to see what goes back in.  

My "Spaghetti Guy" (a.k.a. "The Man of the House") painting was back on the wall in his new spot before the new counter top was even in... but other pieces are still stacked in the basement awaiting judgement.  

One such piece is our "Quote Board."  Our infamous quote board, which is actually an old recycled piece of faded yellow bristol board stuck on the wall with tape. This piece of paper has been an institution in our family for almost five years.  It has been decorated and written on, referred to and often autographed by our female friends and family visitors.  

It may not be pretty, but it is our family creed.  It evolves with us, it grows as we grow, and it lifts us when we fall.  We all contribute to it, and we all take from it what we need: 

One winter morning in the wee hours I was sitting quietly in the kitchen pouting over a broken heart, looking around at my house, at my life, and I thought of one of my favourite quotes from childhood.  Early in my life I began collecting quotes, my first memory of this quirk began with Eleanor Roosevelt saying on a page "We teach people how to treat us."  

I noticed how much I missed the whiteboard/corkboard that had hung beside my EX-armoire in the kitchen, how I had printed a Dr. Seuss quote beside a balsamic vinegar dressing recipe and the newspaper clipping of Bill's valu-mart store hours.  I needed to replace that quote, and I couldn't think of any better time to do it.  

Rummaging around in the basement at 4 a.m. I found an old bristol board from my Meaford Farmers Market Board of Director days, flipped it over on the kitchen counter, sat down with my couple of fancy coloured Sharpies and started writing.  I surprised myself by remembering quite a few of the items on the whiteboard, then I ran down and retrieved the EX-whiteboard from the rubble to copy the quotes I had missed.

In my idiom-inspired Sharpie-fume fervor I barely noticed Cassie sleepily perched across from me until she asked if she could put something on that piece of paper.  "Of course!" I said, and rustled up some crafting supplies for her to create that big pink butterfly stuck on the left in the photo above.  We chatted and crafted until the sun came up, and when Claire woke up she was only briefly puzzled by our very awake state.  She hopped on board and had to create something as well, hence the heart-filled peace sign to the left of their tiny school photos stolen from the proof thingy from the school photographer. 

Those items have remained there all this time, as have the original quotes I neatly printed that morning.  We have added to the "board" numerous times and we still have plenty of room, although the girls all know that additions to the board are a sacred act, approved only by myself.  

Should they wish to have quote boards in their homes when they grow up they can put whatever they want on them.  For this one I will rely on my wisdom and experience to sift through the superficial social media stuff they come across daily, and allow only true, intelligent, and inspirational comments.

The photo is small so I thought I would share some of our favourites.  These quotes may be historical, may be realistic, may be deep in meaning for some and not for others, but they are all essential to who Claire and Cass and I are.  I hope you enjoy some of our favourites:

Fortune favours the brave

Luck = when preparation and opportunity meet

A MISTAKE MADE MORE THAN TWICE, IS A DECISION.

Honesty is the best policy

If you're never scared, or embarrassed, or hurt, it means you never take any chances.

You are what you think you are! 

What do you think you are? ~ Oprah

There are also some clippings that have meaning for us, a romantic card, a medal of friendship from a birthday party, a couple of photos, including one of Captain Jack Sparrow.  If you happen to not be familiar with him here is a closer look:

(YAHOO!!! Now I have Robert Downey Jr. AND Johnny Depp on my blog!!!)

 We must not weep for what might have been... for there is still time. ~ Edward Matchett

And one of my personal favourites and possibly the most true:

Treat every problem like a dog would: 

PISS ON IT AND WALK AWAY

 Yes, the quote board will be taped back on the wall... at 4 a.m. tomorrow.  :-)

Renovation Reflections

Yesterday my kitchen renovation was officially complete. It began October 5, there were few snags, it's all done now ~ overall project success! 

Thought I would post a few photos and notes for amusement...  #1 tip I would pass along to anyone about to undergo a major reno?  Keep your cold air return and vent registers covered during the work process!! 

Random items such as dog toys (namely bouncy roll-y BALLS) (which are expensive!) easily roll into the ducts when they are open.  Dog thinks it's fun.  Duct-cleaning-furnace-maintenance guy does NOT. 

Claire and I began the demolition process when the dumpster arrived a couple days before the contractor, with Reese looking on in confusion/horror, perhaps wondering if his humans had gone crazy (there may have been some raucous yelling while we bashed apart the old cabinetry and flinged it with glee into the dumpster):

Our strong-silent-type Contractor continued the demolition with careful removal of the 70's decorative bulkheads on the ceiling, and properly cleaned and repaired the sub floor to prepare for the new 12mm laminate flooring I chose (our house is too doggy and high traffic to have easily-destroyed hardwood).  

 

The Electricians helped us map out the grid for all new recessed lighting - I think the new pot lights are my favourite part of the reno?  hhhhmmm.. that and the dishwasher.  Yah baby - D I S H W A S H E R

Felt like we were camping in our own home for a couple weeks there, but worth it.

Cabinets started coming together, major drywall patching on the ceiling, flooring in half a room at a time, fresh paint... just a four-week wait for the new countertop. Beloved countertop...

The bench, with storage, for which the Warden is fashioning a cushion. :-) 

The hutch, for all the paperwork junk and technology our family loves to use:

Nod to my beloved Norwex representative for showing me awesome and environmentally-friendly products for cleaning the new sink!

 

And.... tah dah..... done! 

I have dreamed of this renovation for the 12 years I have owned this house, and it has turned out even better than I had imagined it would. It's like my very own little Make-A-Wish dream come true (except I got to pay for it all LOL).  

Many thanks go out to everyone involved, from the Home Depot folks who walked me through the whole design process, to the amazingly talented and cool-as-a-cucumber Contractor who became part of our family for the time he lovingly spent restoring my home to my specifications, to the family and friends who patiently put up with me through the process.  I have not been a peach to deal with some days.  Imagine!

I thought long and hard before making the decision to renovate while off work battling cancer; was it the right time to do it or should I have waited until I was back to work and had to deal with that stress as well as reno stress?  

I found it to be a surprising amount of work, it increased my busy factor by quite a bit.  Lots of decision-making and errand-running, not to mention packing, cleaning, and unpacking.  I thought I would want to and have time to escape reno commotion to catch up on visits with friends out of my house but it was just the opposite; any time I wasn't involved in reno stuff or every day  family stuff, I was doubly exhausted than my normal.  Thankfully Contractor made it easy on me, he is extremely neat and thorough, and considerate in everything he does.

We jumped in with both feet and just went for it, and now I am glad we did.  Not only is the kitchen more functional (especially for my bum leg the drawers are SO much easier to use!) it is more comfortable for us to relax, cook, and hang out in.  Our family and friends can sit and enjoy this fresh start and MY fresh start all together in one beautiful, healthy environment.  I am so grateful! 

Article & Photos © Natalie Richardson, 2015

...and in other news... Melanoma Awareness

We have had a busy couple of months around here, all the usual stuff plus kitchen renovation, Cassie's ankle physio/recovery, grade eight homework times two, the girls' play rehearsals for the Kids in the Meaford Hall production of Aladdin in December, kitchen renovation, my antisocial crankiness, trips to Toronto, oh and did I mention kitchen renovation?  Phew it has been a whirlwind!  Overall good though, lots to report.

With my "remission" revelation comes renewed energy and desire to promote awareness of melanoma and it's related issues.  In May I participated in a cool Melanoma Monday event in Toronto on behalf of Save Your Skin Foundation (SYSF), the La Roche-Posay Become a Skin Checker campaign.  I had also written a blog as a guest on the SYSF website, and spoke in a webinar on my perspective of survivorship, also with SYSF.  

I am pleased to report I have been asked to participate in another upcoming SYSF event also in Toronto.  I will be among a small number of people presenting to the Ontario Government in early December on the top needs of a melanoma patient going into 2016.  Patient advocacy is a large part of the work SYSF does, and I am happy to share my perspective as a patient on the melanoma experience as it is today.  I have been relatively fortunate in my melanoma treatment and I know I am lucky to still be here to talk about it a year and a half after diagnosis.  I wish to bring awareness to this disease so that other Canadians can also have timely access to treatment of metastatic melanoma. 

This week I am also booked for a conference call with a Toronto-based team managing an upcoming skin cancer awareness project in collaboration with Save Your Skin Foundation. It sounds like it will be a social media campaign bringing awareness to sun safety and some other stuff that I can't share just yet but will discuss if and when it works out.  I am looking forward to hearing more about it! 

More details to come...  In the meantime I will share one of my favourite photos from treatment days at Odette Cancer Centre, Sunnybrook, in Toronto.   It was a random photo I took of my bracelets.  My hospital ID, and my beloved charm bracelet given to me by a friend for Christmas, on which I have charms that I have collected as rewards to myself for milestones in the last couple of years.   I feel this photo shows many facets of the state of my personality at this time.  Juxtaposition of cancer treatment and my real life, if you will:

 PS - Just for the record, for those of you who may wish to ask: no I do not have a "return to work" plan in place as of yet.  I still have quite a way to go in my physical and emotional recovery, and I am still going to need time before returning to my very public-facing employment position.  I have been in shock for a year and a half, it is quite reasonable to expect that it will take some time for myself and my family to recover from that alone.  Just saying.  


Thank you for your continued love and support!

Week 68 and the R-Word

I am here.  We made it.  Week 68 marks the conclusion of the MEC3 clinical trial for ipilimumab treatment of metastatic melanoma in which I have been participating at Sunnybrook since August 2014.  

I will still have head-to-knee CT scans every three months for monitoring recurrence, and my bloodwork will still travel to Chicago for research purposes, but the technical time frame of the trial is finished.  Pacmen are in and continuing to do their work, and I am looking forward to January when the three month post-treatment time hits and (we are hoping) my side effects will subside.  My last treatment was at the end of September but the tummy trouble, fatigue, and chemo brain remain - January 2016 brings the first of a treatment-free period since my diagnosis in April 2014.  

It is no secret that I have been struggling with my cancer battle, both physically and mentally.  The emotional turmoil rivals my physical scars for pain and confusion.  I can recall the exact moment that I last felt I was my care-free self.  Let's just say it was a long time ago.  My carefree is gone, replaced by anger and fear; I have been working hard to put my life back together in some semblance of what it used to be.  Like a puzzle with some broken pieces, I am hoping I can be put together, just maybe with some tape on the damaged spots. 

This is where I will begin: remission.  Yes, I said it.  Last week I met with my Endocrinologist who monitors my post- thyroid-cancer situation, AND my Medical Oncologist who has my post-melanoma situation under close surveillance.  They both confirmed what my lovely Family Physician suggested, that I can consider both cancers in remission at this time. 

I have told a few people but this is the first official shout from the rooftops... I have had to let the information sink in and have enjoyed a quiet swim in it privately before I could put to words my feelings about it.  I have been in a state of shock since diagnosis a year and a half ago, and now I feel that stress may actually get a reprieve.  

I am in remission.  I feel relieved. 

This is the first time since April 2014 that I actually believe I may live to see my daughters graduate post-secondary school and see them build their lives and families.  

This is the first time I have instinctively felt that I can refer to myself as a Survivor.  

In the past year I have referred to myself as "survivING," but that pales in comparison to the relief and hope I now feel in my heart and soul.  I really may actually have that pacman party I have been talking about.  I may not be done with my cancer war, but I have survived the first battle. Major battle.  Survived. 

My gratitude is enormous, for my family and friends who have helped my girlies and I in countless ways.  I am grateful for the stroke of "luck" that got me the ipilimumab treatment in the randomized draw I signed up for.  I am grateful that my body has been strong enough to tolerate the treatment.  I am grateful for the continuous care and support I get from my medical team.  There are so many pieces that have come together to get me through this past year and a half, it will take me another year and a half to name them all!

A few weeks ago I wrote about the R-Words in cancer, and I do need to clarify my use of the word REMISSION, as it relates to me:

Papillary Thyroid Cancer - my Endocrinologist said that remission is not a term used in this type of cancer.  But my 6-month thyroid ultrasound shows "no evidence of disease."  That is the good part! My bloodwork and scan was normal save for a few enlarged lymph nodes, and I will have another ultrasound six months from now, but in the meantime yes, I can call it "no evidence of disease" thanks to the surgery last December and the radioactive iodine treatment in March 2015.  Thank you!! 

Stage IIIb Nodular Melanoma - similar to the Endocrinologist's explanation, my Oncologist said that remission is not a term used in the field of melanoma treatment, it is actually a Hematology term (blood-related cancers).   She said we can refer to my melanoma as "under surveillance," no evidence of disease at the moment, based on clear CT scans.  I'll take it!  Thank you!!!

In any case, I am going to use the word remission. Remission Remission REMISSION!!

I am still at high risk for recurrence and the melanoma remains the more serious threat, but for now I will bask in the glow of some sweet sweet survivorship and work my ass off to get my life back.