The happiest I have felt in a long time, especially at Christmas, is today. I have been doing a year-in-review mentally, as I have had the pleasure of spending time with family and friends, surrounded by love and laughter all day long.
Now I am too excited to sleep, I want to keep basking in the glow of our upside-down Christmas tree, listening to the "Holiday Classics" channel all alone, waiting for Santa with all of the kids in town, fending the dog off the cookies(and carrots) Paige carefully left out for tonight's much-anticipated visitor(s)... NORAD currently reports Santa over Antarctica and I know he is coming here, as we have always been fortunate enough to have had.
We are fortunate in countless ways, and I find myself again at a loss to put into words our gratitude for the love and support we receive as a family.
Thank you to everyone who has helped make our year a successful one. It may not have been perfect, but it is closing with a double-dose of "remission" which is pretty close to perfection, in my experience. I/We cannot thank everyone enough for the thoughtful help and messages and encouragement and surprises and and and and and and and .... your care is felt and appreciated today, and always.
We are all looking forward to the next week or more of festivities and visiting with our respectful families and friends near and far. I hope you all have such wonderful things to look forward to. And in addition - a full moon!
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:
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!
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 :-)
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!
