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!

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 💖

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 

Re-group, restore, and re-charge

This summer has been exactly that of the title of this blog: a few months to re-group and recover from an unexpected turn in the roller coaster of life, restore my faith in others - and in myself, plus re-charge my batteries via some changes in pattern.

afternoon siesta in Cuba, just sayin'  :-) 

I am happy to report that I have achieved all of the bucket-list goals I set for myself in the spring, and I have many loving friends and family members to thank for the support along the way.  Life is crazy enough without adding the post-cancer dynamic to it, but with the love of true friends it is possible to get through.  Knock on wood, my health has been great - energy great, losing weight, have full confidence for another good CT scan in September.

Last night the girls and I celebrated a huge milestone with a bunch of new friends; the end of summer vacation brought the last shifts of their summer job(s).  They have worked hard all summer at a high-end restaurant in the next town over, as the resident "Aquatic Technicians," working three nights per week each sweating their asses off in the dish pit.  

There were many times they dreaded going to work and feared the pressure and fast pace, but they stuck with it and buckled down with the team and "dumped it every night!" - I quote the Executive Chef's compliments of them last night LOL  There were several times we all thought they might quit but nope! They persevered, and they are now basking in the glow of a job well done and the power of sticking with a well-laid plan.  This accomplishment is in part to the credit of the Chef's team in the kitchen, they are an inspired group of young entrepreneurs who welcomed the girls with open arms, taught them well, and supported them when they needed it.  This respect in turn earned the girls' desire to do a good job for them and to pitch in extra when the team needed it.  

All summer I watched this transformation in the girls, from anxiety and trepidation to full-on confidence and a lift in understanding of the working world as they experienced what it is to be part of a team that values their effort.  They were inspired - as the rest of the staff are - it was contagious, and as a result it has provided them with a plethora of fun memories of stinky dishwater and singing chefs.  :-)  I am one proud Momma.  *I may or may not also be slightly relieved that our six-night-per-week 10pm drives to Thornbury are over* LOL 

We made lots of memories in addition to work; one notable experience was seeing Green Day in Toronto, now ranked as my favourite concert of all time.  We also traveled a bit, the girls to a friend's cottage, Canada's Wonderland, several shopping trips to the city, and my long-weekend getaway to Cuba.

  

Yes, Cuba.  I, the eternal skin cancer patient, went to sunny Cuba in August.  It's not what you think, rum-soaked resort life beach pool sun sun sun, no... there was some rum LOL  but I got to drink it in the home of friends of my traveling companion, with whom I had previously traveled to Cuba in 2008.  We wanted to get away for a weekend this summer just the two of us, a girls' weekend - and as we priced hotels etc. in the likes of Niagara, my Cuba-expert friend suggested for the same price we could buzz down there for a few days.  And so we did, staying in the city of Moron, at a hostel, living the local Cuban life - and enjoying the local Cuban food (which is amazing, and a FAR cry from what is served at Cuban resorts).  

We went on horse-buggy rides to tour the city, relaxed on the balcony, went to a friend's birthday party, ate avocados and mangoes unlike the puny imports we have here, had carefree afternoon naps (in our blessedly air-conditioned room), generally just took a step back and chilled out... we laughed, we cried, and we talked non-stop, as has been our talent since we met in grade eight.  :-)  It was SO good to re-connect, I really needed that time with my buddy, and I came home feeling strong and empowered, refreshed in exactly the way I was hoping this trip would do.  (more pics below)

This trip is actually the start to a busy few months of travel plans in my household, I am happy to say.  I have always loved to travel and wanted to do more of it, but with the setback of the last three years I thought I was grounded, I had sort of written off my plans for world travel, staying home with young kids and a career taking most of my available energy.  But.... intrepid as I am... I have somehow landed myself in the wonderful position of being invited to travel again, and I am repeatedly proving to myself that I can actually do it.  

Flying to Montreal with Save Your Skin Foundation last September changed my life, and in the year since then I have come to realize the extent of the changes are even still unfolding.  

I am grateful beyond measure to be freshly back into the foray of international travel, Cuba was a good tester.  My next trip is for a September weekend at Whistler, via Vancouver, for a work meeting.  November I have work in Toronto and Ottawa, and in December the girls and I are going on a much-deserved (and long-delayed) vacation to the States - we are going to California!    

The pièce de résistance is in October...  I can hardly even believe I am saying this right now, but... drumroll please...  I am going to Australia!  I have the honour of representing Save Your Skin at the World Congress of Melanoma 2017 and subsequent meeting of the Global Coalition for Melanoma Patient Advocacy.  I will blog more about this in the near future; there is lots to explain, as I have been remiss in my blogging about the work I have been participating in for melanoma patient support in Canada.  My Aussie travel visa is approved, I am working on booking flights, and I will soon choose the sessions to attend at the Congress: I get to select relevant information and data to bring back to Canada from the world leaders in the prevention, diagnosis, and treatment of melanoma skin cancer.  Words cannot express the honour I feel for being given this task.    

So as I daydream about the summer passed and the koala bears to come, the girls are preparing for back to school on Wednesday - there is much organizing of backpacks and choosing of outfits happening upstairs LOL   Tonight we are having an end of summer campfire to celebrate our successes over the past few months, and we will renew our vow to take life one step at a time, and to live every day to the fullest.  

 Sickest taxi I have ever been in

 Casa guard dog my buddy Rosie

 Laguna de la Leche

Market day in Moron, Cuba

Cheers!  Viva Cuba

April 2008 hot messes ~ August 2017 hot messes part 2 :-)

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

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....

Column - Meaford Express - Simcoe.com Oct. 2016 - Work after a cancer diagnosis

This subject has been forefront on my mind during recovery from cancer surgeries and treatments, though I have not discussed it publicly.  Until now.  

It is a difficult topic for many folks dealing with a life-interrupting illness: what to do about work?  How to maintain or regain a sense of purpose? How to deal with the stigma of being away?  How to get back in.... and how to be true to yourself, your family, and your "new normal."

Please click here to read my column:

17-Oct-2016 ~ Added note: 

I received a helpful email from my Aunt, suggesting I add a bit more information to this article.  Although I can't add it to the published version on simcoe.com, I can add it here.  

What she says is true, and more can be found elsewhere online or with one's personal employer in such a situation, and I was indeed offered these alternatives at my place of employ (thank you Bill's valu-mart).  If you find yourself in a health crisis such as mine, please consider the following: 

You might want to include something on the legal right to accommodation:  the employer's duty to accommodate – short of undue hardship. While individual choices are important – and the accommodation requirement must be individualized – I think that many people do not know that they also have legal rights, for example, that a gradual return to work, or shorter hours, or other accommodations aren't just at the preference or 'good intentions' of their employer or union.  (Of course, the employee must also be willing to 'accommodate' and seek solutions.)

Click image:

Or visit http://www.ohrc.on.ca/en for more information re: Ontario 

Thank you Auntie C! 

Last week's milestone, and other news...

We are two weeks into high school, and still alive... well, mostly alive - Claire had a little trip to emergency last week after an ankle injury in gym class.  Thankfully her ankle is not broken, but it is painfully sprained.  This renders her helpless for the girls' newspaper routes, so that responsibility rests fully on Cass until her sister is recovered.  Have I mentioned the paper routes before?  Oh no? Maybe because I have been trying to block them out of my memory!?!

This summer I got the bright idea to encourage my offspring to start earning their own money; summer jobs did not pan out as hoped, but local newspaper carrier routes did.  This is where the story should stop: I should have thrown out the flyer and not have helped Claire contact her potential new boss... BUT.. anyway, long story short, both girls have toiled six days per week since July delivering papers and flyers in our neighbourhood and downtown, and they have reaped the benefits of the direct-deposit world.  (this did NOT save me any money at back-to-school-shopping time, just saying)

In any case, none of us are loving the paper routes, but it is a great life lesson.  I keep telling the girls if they work hard and make good choices then this may be the worst job they ever have... and they'll be able to tell their children how they had to SLAVE over newspapers, biking them all over town, in their pajamas, in six feet of snow, UPHILL... BOTH WAYS!

I'm finding it hard to believe that it is the middle of September already.  We are all adjusting to school schedule time again, and the girls' autumn theatre production rehearsals begin again this week.   And at the end of next week I will be one full year post-treatment for melanoma.  

I get to mark this anniversary with a small graduation.  Last Monday I had my quarterly check-up, bloodwork, CT scans and consult with my Medical Oncologist at Sunnybrook.  Pending clear scans this time around, I will move from CT scans every three months to every six months!  

I knew this was coming, but I didn't know how I felt about it until the actual moment when my medical friends said OK then see you in March!  MARCH!! 2017 YAH!  I wished them a speedy Merry Christmas and high-tailed it outta there before they could change their minds.  I swear that was the fastest I have ever made it to my car in the far parking lot.

Sitting in the car for a moment I caught my breath and absorbed the news.  Six months - that is wonderful.  But for a cancer survivor it can also be very frightening.  To move farther away from the safety net which is the Oncologists' close and careful watch, allowing more time for any undetected diseased cells to roam around doing their evil work, can cause some hefty anxiety.  Can't go on forever having 3-month scans, I know... but...   I started the car, blasted some "Victorious" and charged up the 400 Northbound.

Still have to wait about three weeks for the CT scan reports, but we are all planning on them being clear - No Evidence of Disease (NED).  My June scans showed a small inflammation on my right lung so that has had me a bit stressed, but... as my Gramma always says: worrying won't help it at all, so just live on and deal with it if it happens.

One snag - I still have the issue of the tummy trouble, so my Oncologist requested that I pursue the examinations she had ordered in the winter.  Dammit, I'm not going to get away with ignoring it - she wants to rule out any other damage or trouble from the ipi treatments.  I am going to pursue these tests closer to home though, through my family doctor.     

Otherwise living on I am, newspaper routes, theatre auditions, high school lunch arguments, Huffington Post blogging for Melanoma Through My Lens (coming soon!), and continuing to work through my fears toward the goals I have been setting for myself.