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

Hug a cancer survivor on #WorldCancerDay

February 4th is recognized as a day to commemorate those who have lost their battle with cancer, as well as to give hope and support to patients, their families, and survivors of the various forms of the disease.  World Cancer Day aims to save millions of preventable deaths each year by raising awareness and education about the disease, pressing governments and individuals across the world to take action. 

Claire asked me if we could do a photo for World Cancer Day again this year, and I was touched, I appreciate she wanted to celebrate this small feat with me today.  Here is her inspiration (and skillful photo editing):

(and on my wrist yes, is my new tattoo)

For me personally, it is a day to reflect on what is important to me, what I have accomplished lately, and how I can achieve my goals for the future.  It's also a good day to write a bit - I am tucked away in the master suite with pen in hand.  It's been a while... very busy few months being back to work and all; I'm still feeling my way around the balancing act which is life (most days thinking I will never make headway on that one). 

I've also been battling a severe sinus and ear infection for almost a month, including 15-day course of antibiotics, and - if you can imagine - it has made me even more cranky and anti-social than usual.  Not possible you say?  HA - take it from me, yes, its true.  

  

Unfortunately, one side-effect of my thyroidectomy is all the cancerous lymph nodes that went with it.  Like, literally went... they were removed.  That means my body is missing a section of it's lymphatic system, which moves stuff around, namely bad stuff that needs to get away from an infection in order for it to heal.  This is actually my second ear infection since August; I was not prone to them before, but now I have to be careful of any infections from the neck up. And well... from the neck down.  

It seemed that my super-boosted immune system (from the ipi treatments for melanoma) was warding off everything else too - for almost two years, I hadn't had so much as a sniffle.  Now I worry that it has worn off, is that a thing? and what does that mean for my melanoma?  Will it come back like the cold/flu?  My Mom says I'm just getting old, somehow that is comforting - before cancer I never thought I'd say that.

I'm happy though, to report that my kiddos are well.  They survived the first semester of grade nine in a new school; they have almost straight A's and a gaggle of new friends, plus unflagging spirits ready to tackle anything - everything - that comes their way.  They have been very helpful in the past few months as we have all been adjusting to my every whim, even though they have been fighting challenges of their own.  Don't worry, they are healthy, it's just some of the other stuff can be overwhelming; we all know it's not easy being a teenager. 

They still hold the philosophies reflected in our photos from last year's World Cancer Day, Scott too... I don't know how they all put up with me:

Happy New Year everyone, may 2017 bring you peace and happiness.  xoox

Patient Advocacy 101

eeeek - when I first explored the "advocacy" option of my melanoma journey, it wasn't entirely intentional... and I was intimidated, to say the least.  I had to read and re-read the advice posted online and really think it through.  

I was sure I needed to have my voice heard (and my family may or may not have been tired of hearing it!!); I had to go big... just a bite at a time, but bigger.  

I had already asked as many Oncologists as I could get my hands on about my disease, and how it may affect my future, and that of my kids (who, for the record, now have the dubious distinction of a close family history of cancer. For the rest of their lives they have to answer those questions when asked about their family medical history.)

I am starting to get more comfortable with advocacy, but the most important thing I have learned about it is that any little bit I do to contribute to it is helpful.  Every little bit helps, as with everything worth working toward in life. 

Last February I spoke at the meeting Save Your Skin hosted at Queen's Park, and I was nervous.  But I spoke about what I knew.  I was sure about what message I wanted to convey to the people in the room that night, it was my story after all, my family and I had lived it.  

Following that meeting I wrote a letter to Federal Minister of Health: Hon. Dr. Jane Philpott - thankfully I had help writing that letter! (I'm a decent writer, but not the political kind) It was my story, but with the background information and format needed to support it's credibility.  

A few months later I wrote another letter, to Dr. Eric Hoskins, Minister of Health in Ontario.  And just yesterday I attended a conference at which many patient groups were represented, and I learned even more about how I can get help trying to get my needs met, as a cancer patient in Canada.  

The painful memories of my experiences not that long ago motivate me to spend a bit of time sharing the reality of the situation.  And I have been hearing even more painful stories from across the country about Canadians that are not able to get access to cancer drugs that have been approved for use in Canada, but are not funded in their province. 

That's a thing.  That happens.  These days.  And you never know when it may affect you until you're right smack dab in the middle of it.  

The reason I am telling you all of this now?  RIGHT HERE:  this excerpt from yesterday's press release by Save Your Skin Foundation:

"In June 2016 the first PD-1 immuno-oncology treatment for melanoma, Keytruda, was listed to the provincial formulary with a recommendation to fund either Keytruda or Yervoy, but not both – so that anyone having received either of these treatments through standard treatment or in a clinical trial as of June 2, 2016 would not have access to any other immuno-oncology treatment, regardless of having two distinct mechanisms of action. Meaning any patient who does not respond to one immunotherapy has no opportunity to access a second line therapy option (in the BRAF wildtype population)." 

:-(

It's not as hard as I thought it would be to share my opinion with the leaders of our country and as such, our health care system.  Please... take it from me (one who always backs away from politically-charged conversations) - if I can do it?  YOU can do it.  

Should you feel inclined to take a few moments to email - doesn't even have to be snail mail - our provincial and federal leaders to ask for the treatments that I needed but received only through clinical trial, or... really, I have been spoiled enough with all this surviving stuff... how about an Ask for those patients who have yet to be as fortunate as myself: those on the wrong side of the coin toss, the gene mutation, or the province borders. 

It is made very easy here! 

I will list the individual resources so you can skip more of my blabbing on.  But for those who might like more description, check it out below this list:

1. Send(with edits) this letter to  Federal Minister of Health: 

Hon. Dr. Jane Philpott

House of Commons Ottawa, Ontario Canada K1A 0A6 

TO: Jane.Philpott@parl.gc.ca

2. Send same letter(with edits) to your Provincial Minister of Health.  Find your province here.

3. Read this  

4. If you are able to do more? Check out the details below:

Patient Advocacy – How YOU Can Help: 
Patient Advocacy Tools and Templates

We urgently need your help. Now is a critical time to push for provincial and federal support for equal timely access to new treatments for all melanoma patients so that no Canadian is left behind.

We urge you to consider writing to your Federal Health Minister and to your local government representatives to convey a request for support. We have also included this template letter, as well as links to appropriate government contacts, making it easy to find out who your provincial and federal representatives are.

The Save Your Skin Foundation has assembled materials to assist you to do the following:

1. Write to your Members of Parliament to share your thoughts on this issue or to request a meeting – contact information for local government members can be found at: http://www.parl.gc.ca/Parliamentarians/en/members
2. Write to your MLA/MPP asking that he/she write to the Minister of Health (click here to download sample letter)
3. Prepare for and have a meeting with your MLA (talking points and fact sheet)
4. Report back the results of your MLA meeting – contact us by email or phone any time
5. Write a letter for your MLA to send to the Minister of Health
6. Write to your provincial Ministers of Health -(Click here to find out who your provincial Minister of Health is: http://healthycanadians.gc.ca/health-system-systeme-sante/cards-cartes-eng.php)
7. Write to the Minister of Health – contact information can be found here: Federal Minister of Health: Hon. Dr. Jane Philpott – https://goo.gl/MB1XtI

If you’d like a general overview of patient advocacy, you can also download our 2016 advocacy outline by clicking here.

Thank you for taking the time to become involved on behalf of everyone affected by Melanoma across Canada.

Together we can and will make a difference!

Let your voice be heard via social media as well!

Tweet or post to share your message to accounts such as @HealthCanada using hashtags like: 

#FairChance

#MelanomaTreatment #FightMelanoma #HealthCanada #PublicHealth

#CureMelanoma #MelanomaSurvival #PatientsVoice #PatientsFirst

Facebook: 
www.facebook.com/SaveYourSkinFoundation/
www.facebook.com/FondationSauveTaPeau/

Twitter:  
@saveyourskinfdn  
@sauvetapeau

Important new cancer treatments approved by Health Canada marred by major provincial reality disconnect for patients - Press Release 22-Nov-2016

Patient access to innovative new cancer treatments seriously limited by provincial funding recommendations across Canada

Press Release body:

TORONTO, Nov. 22, 2016 /CNW/ - Health Canada recently conditionally approved an advanced new treatment option for Canadians battling metastatic melanoma. The treatment consists of a combination of two immuno-oncology agents: Opdivo + Yervoy, the first combination in the immunotherapy space. While many applauded the approval, numerous patients and doctors are holding their breath to see what provincial recommendations will come if approved for reimbursement by the pan-Canadian Oncology Drug Review (pCODR). Across Canada, cancer patients are being restricted to access to innovative new treatments due to funding recommendations made by health technology assessment agencies and provinces. Over the past year, patient access to some cancer treatments approved by Health Canada have been seriously limited as the result of these recommendations.

In June 2016 the first PD-1 immuno-oncology treatment for melanoma, Keytruda, was listed to the provincial formulary with a recommendation to fund either Keytruda or Yervoy, but not both – so that anyone having received either of these treatments through standard treatment or in a clinical trial as of June 2, 2016 would not have access to any other immuno-oncology treatment, regardless of having two distinct mechanisms of action. Meaning any patient who does not respond to one immunotherapy has no opportunity to access a second line therapy option (in the BRAF wildtype population).

 

Many more immuno-oncology drugs are currently in review, including a number aimed at treating non small cell lung cancer, the number one cause of cancer related deaths in Canadians and women. 

The Save Your Skin Foundation, along with other patient advocacy groups, are exceedingly concerned about what recommendations these approvals will come with and how they will affect access to important, potentially lifesaving therapies.

Kathy Barnard, Founder of the Save Your Skin Foundation, owes her survival of metastatic melanoma to Yervoy, which she received in a clinical trial, after failing on all previous treatments. "Finally, after 30 years, we are seeing innovative treatments that are helping patients live longer, but when provinces make funding recommendations that limit treatment options for patients, we are no further advanced than we were 30 years ago when no treatment options existed at all," says Barnard. "We're hearing from patients all over the country who are not getting the drugs they need and they don't know why."

It is not known yet what the funding recommendations on this new combination drug will be, however, currently in Canada, Yervoy, a CTLA-4 checkpoint inhibitor, as a single agent treatment, has now been restricted across all provinces - the only country in the world where this is the situation. 

"With this, we find Canada one step forward and two steps back, leaving some patients without access to the treatment they need. There is a clear lack of transparency as well as a lack of innovation in the approval process that is in stark contrast with the ever-evolving developments we are seeing in the treatment of cancer," expressed Barnard.

Barnard goes on to state that health technology assessment (HTA) agencies, governments and manufacturers must work together with oncologists to find strategies that translate to the best course of treatment for patients. "We need to work together to find innovative solutions that ensure breakthrough treatments are available to all patients, while also reducing time delays, in order to keep our health care system sustainable," said Barnard. "Cancer patients need to have access to cancer drug options, and access needs to be available from within the communities where they live."

About the Save Your Skin Foundation

The Save Your Skin Foundation is a Canadian registered not-for-profit that supports those touched by skin cancer by helping patients to navigate their journey through informed, compassionate care and personalized support to those touched by melanoma and non-melanoma skin cancers. Through programs and outreach, we support education and ongoing awareness about skin cancer, from prevention to survivorship. The Foundation also acts as a conduit for health care professionals and patients in the Canadian health technology assessment and reimbursement landscape. Please visit www.saveyourskin.ca for more information.

SOURCE Save Your Skin Foundation

For further information: Save Your Skin Foundation Media Relations: Karran Finlay, 1.778.988.8194, karran@saveyourskin.ca, saveyourskin.ca

Plumbing vs. Electrical

Even in the renovations I have had done to my homes over the years, I have always preferred the electrical work to the plumbing.  The way electrical wires and cords connect or disconnect and trigger each other to do things fascinates me. Electrical panel is the master, it all makes sense!  

As opposed to the gravity-fed, dark, wet, twisty-turny pipes... draining stuff and leaking all over, they have always caused me anxiety and headache.  

Much in the same with the host of "situations" that can happen in one's health when dealing with cancer: the pipes are dreadful.  I received a second opinion from a local Surgeon/Gastroenterologist this evening (as if I had not had a crazy enough day already).  Just saying. 

I was given a diligent reminder, in the form of a very frank conversation with a Resident Physician (who was very caring BTW), that I have a serious form of a deadly disease.  Much as the positive-thinking crew and let's-move-past-it friends in my life cheerfully try to distract me (which I appreciate!), it is I who sits in the appointment chair discussing my very personal plumbing issues.  This is an unmistakable hallmark of living with advanced cancer.  

Once it's in there you're screwed.  It can go anywhere.  

Prevention is key.  

Early detection is almost even more key (because at least then treatment, in whatever form may be appropriate, is targeted to the detected disease).   

But still early detection can be a struggle on it's own - I have been resisting the damn scope for over over a year!  Stupid! you'd think I would have learned after the whole MOLE-NEGLECT problem in the first place!?! 

No..... I have been putting off further examination of my plumbing since the damage apparently done by the pacmen... 

But the buck stops here.  The Boss spoke to the Singing Surgeon and told him to get me in the hot seat.  Uurghh

Off I go for a scope and a gastroscopy.  We need to rule out any other form of cancer in my digestive system before we just go and blame my tummy trouble on the immunotherapy.  I mean, we all KNOW it's from the immunotherapy, but.......

As my Medical Oncologist told me at Sunnybrook a couple of weeks ago, we need to make sure that the reaction of my immune system to the treatments I had did not bring to the surface any other anomalies in that time.  I have dodged it so far this year, even tried all the diet and NON-(alcohol) tricks I could think of this summer, but no escaping the Boss-Surgeon team, they have me in their sights.  

Stupid cancer.  I used to be free!! Please let me re-iterate ...click here to politely re-cap one of my early admissions to having tummy trouble.  If not no worries, just take my word for it, it's been a long friggen time that I have been dealing with this.  Once you have cancer, it never goes away.  

O n c e  Y o u  H a v e  C a n c e r,  I t  N E V E R  g o e s  A w a y !  Your ass is grass.  So to speak. 

Have to rant every now and then, keeps it real.  All true though, seriously. 

One interesting note though that I would like to add, is that the Singing Surgeon (as I have lovingly dubbed him) happens to be the actual person who removed my melanoma-infused mole in April 2014, and did my sentinal node biopsy.  True story!  He is a surgeon in the next town over, but he also happens to specialize in gastro-stuff, and he is the Chief of Staff at the hospital in which I had my first CT scan.  

He has followed my story since diagnosis, he has been CC'd on my clinical notes from Sunnybrook for 2.5 years, and tonight he said right to my face that he reads each one.  Crazy guy! He must work 24-7.  
He recognized me, and even asked how the girls are (he also removed moles on my kids, hence the singing story).  His warm personality and honest humour made me giggle when he said "I always remember a face!  I don't always remember what procedure I may have done on you though... which makes it far less awkward if we run into eachother in the grocery store!!"  wink wink     LOL I'm in good hands, must trust my physicians.  

OK, I'll quit whining now.  

https://impatientpatientmomma.blogspot.ca/2016/03/as-stomach-churns.html

https://impatientpatientmomma.blogspot.ca/2016/01/relaxing-saturday.html

https://impatientpatientmomma.blogspot.ca/2015/02/little-things.html

Gastroenterologist: To Be, or Not to Be?

That IS the question.  More like... My relationship with the Gastroenterologist... will there be one?  or not.  Frankly, I'm still leaning toward NOT.

I have had a busy week of medical appointments to start the month of June.  Two trips to Toronto and plenty of anxiety, dread, and confliction.  I await results from the two rounds of bloodwork I had on Monday, as well as the routine head to thigh CT scans I had also at Sunnybrook on Monday.  

I haven't been feeling well, physically or mentally; CT scan drink plus contrast dye IV typically provide me a couple of days of tummy trouble and fatigue, and this time I have been in and out of a low-grade fever as well.  It's stupid - I hate it! *stomping my feet in tantrum*  I was a good girl though, and rushed to my family physician immediately on Tuesday after Monday's Toronto trek.  Family Doc has note of all of my experience and will be in touch upon receiving my test results. 

Part of my family Dr. de-briefing on Tuesday included an update on the Gastro situation.  

Quick re-cap: along the course of my ipilimumab (immunotherapy) treatments on clinical trial August 2014 through September 2015, I received some damage to my intestinal tract, and it presented itself for a while as some pretty persistent need to stay close to a bathroom.  (I am still squeamish about using the word diarrhea on my blog but I digress...)   20-ish% chance of getting colitis from these treatments, as I was aware when I signed the paperwork to become a fortunate guinea pig recipient of a drug that could "cure" my melanoma.  As chance would have it, I am dangerously close to a diagnosis of ulcerative colitis, but I am fighting it all the way.  

In March I met with a Naturopath to get a 2nd opinion (3rd..4th..), in preparation for my meeting with a Gastroenterologist at Sunnybrook.  We decided that I should begin taking 50-billion multi-strain probiotics every night.  So I did.  Most nights before bed I have taken four capsules of a reputable Canadian-made 12-strain probiotic and ...drumroll please... my tummy has vastly improved.  Not perfect, still have a random day or two per week surprise dash to the bathroom, but it is nothing like the exhausting daily struggle I was having.  

My medical oncologist is worried about said tummy trouble, and strongly encouraged me to have a colonoscopy, to assess the damage done by our beloved pacmen.  I refused scope without first having a consultation with the Gastro (which has made Onc slap my wrists - but I wanted to try the probiotics first! Not to mention I am only 8 months post-treatment so it is reasonable to expect my body will need time to heal).  Finally last week I had a consultation with the newest member of my medical team.  

Interesting gentleman, quite close to retirement but still going strong, with a waiting room full of patients wanting his help with their varied experiences with Crohns and Colitis.  He gave me a quick run-down on the most common causes of diarrhea (high-fibre foods, dairy, caffeine, gluten, alcohol) (most of those I already avoid...except..um of course the alcohol), and ran over the statistics of possible risks my intestines could face during and after a scope. (ick)

I informed him that in the time that I had been waiting for my consultation with him, my tummy was much better, and told him about the probiotics (which is the only thing I have changed in my diet since March).  

He gave me a haughty explanation of how a probiotic wouldn't work as it is an unregulated natural product that is a shot in the dark very unlikely to affect my immunotherapy-induced inflammation. "Just as we wouldn't treat an infection with the wrong type of ANTIbiotic, we couldn't expect one PRObiotic to help if we don't know what the exact problem is." (but I am taking a 12-strain probiotic. I kept quiet as I would have appeared to be arguing) 

He also said I should not use the refrigerated probiotics found in a health food store, that I could catch some worse bug from a faulty bacteria floating around in the probiotics.  He said I should seek out a pharmaceutical brand in a drug store.  Really.  Hhmmm that goes against everything I know about probiotics. 

He suggested that I stop taking the probiotics altogether for a week, and if the diarrhea flares up then take the probiotics again and it if stops then he would say I am the ONE person that works for.  *huff* 

I asked him if the scope would show damage done last year, and if yes, would the only cure be to take prednisone?  Because if so I could save him some time as I will NOT be taking prednisone.  He puffed up and said "WHY NOT? Prednisone is man's best friend!"  I gaped in disbelief as he went on to ask me if I was saying that if I was lying on my deathbed from diarrhea would I refuse to take prednisone and just agree to die?  I said NO, but I am not in that situation right now! Aarrghhh  

I asked for help to understand how immunotherapy had damaged my digestive system, and if it can heal itself with time (and/or probiotics, which I didn't mention again), and he said well Dear, I don't know.  "These immunotherapy drugs are all new territory for us and we don't know."

Well that's what I needed to know!  I had refused scope appointments because I wanted to hear that - ARE we going to find anything concrete out from a scope?  Because if my tummy is feeling better and I am managing it on my own then WHY undergo another invasive medical procedure?  I'm all for being a guinea pig, but I draw the line at some tests that are costly to the medical system and to my own mental and physical well-being. 

I say that at the risk of offending my wonderful Medical Oncologist, the Boss.  She was adamant that I have this test, and I am still considering that I will, if for the purpose of her research.  Or if I have another flare-up.  I was planning to speak to her about that in our appointment on Monday, but she wasn't there, so I escaped the slap on the wrist I am sure I am going to receive.  

Her stand-in happened to be the lovely Dr. I met at the Queen's Park event, and I filled her in on the situation.  She said she would relay my experience to my Dr. and have her call me upon her return from the melanoma conference in Chicago.  

I have mentioned before that I am amazed at the amount of self-advocacy a patient has to do in order to find balance in a complicated medical situation.  I know that I risk offending my Oncologist by refusing the scope, and I am not doing it out of disrespect, I am simply following my gut feelings ..oops, pun not intended.  I just want to get over all of this stuff and move on with my life.  Isn't that what I'm supposed to be doing?? Yes, I am stomping my feet in tantrum again.  I am incorrigible. 

So.... I relayed all of this to my ever-calm family practitioner and she agreed that is is completely acceptable to wait it out and see what happens.  She agrees with myself and the Naturopath about the probiotics, and encouraged me to continue as I have been.  If my tummy trouble persists or flares up, we will cross that bridge then.  And I will have the scope, but closer to home, with a copy of the report to go to my team at Sunnybrook.  

The Gastro also left it with me to call back if I want a scope or another appointment, but until then I am free to go... he did not consider a scope urgent, especially after my report that things have improved since the winter.  Perhaps we will meet again, perhaps we will not.  

Keep Melancholy and Be Calm On

I find myself to be a bit of an emotional heap today, and I keep ranting to anyone who asks me how I am, so I have decided to stay home for the rest of the day and just pout in private rather than embarrass myself further.  Oh wait.. no... first I'll blog about it  - on the world wide web! - you didn't ask, but I'm going to tell you anyway!

I'm mad at cancer today.  I think I have been most of the week, but it is really pissing me off today.  

Two years ago to the day, in a dumbfounded haze of fear and panic, I prepared to be away from work (for a few months?!) for surgery for stage 3b melanoma.   I had only been at my new employ for eight months, was just settling in as nicely as anyone could expect in the environment I was in, managing a busy cash office and payroll system, constantly jumping hurdles to keep shit together PLUS being a mother and home owner and all that regular good stuff.    

My boss and I chose a team to cover my work in my absence, and I had full confidence in the leader(s) we picked.  I still do, though we rarely see each other (I have needed it to be that way) and we have managed to pass months into years - two years - and the store is still standing and everyone is still alive.  Including me, which is great.  Well, in my opinion.  

Today it is my replacement friend's last day as Acting Front End Manager, and I am a mess.  I wish her well in her future endeavours, and I certainly harbour no hard feelings! I have changed jobs many times along the steps of my career so I understand why she is going.  Hanging on waiting to see what my schedule is going to be is hard enough for ME to do, I certainly don't expect my friends and co-workers to pause life and wait as well!  But it still sucks.. I should be there today.  I should be in there counting cash and slugging carts and working my ass off.  But I'm not.  

This SUCKS.

Thanks for listening.  

On a personally-melancholy day like today I typically kill myself listening to sad jazz music that makes me reminisce, or I pore over photos, wondering at all the antics my friends and kids and I have caught on film, and I remember what a great life I have.  How far I've come.. And what I feel I have left to do.  

But today I distract myself with some images I have been collecting along my journey of stealing - ahem borrowing - graphics for my blog.  I have noticed a trend: I have always liked the "Keep Calm and Carry On" adage, and I have giggled lots of times when I have come across a new adaptation of that saying, and have saved it to my files.  

Enough pouting, this is what I need to do:

Oh yes.... and this too:  

PS - If anybody out there comes across the code for an image I have posted that is theirs please comment below or email me some hate mail and I will happily add your link to my site - apologies in advance, I stole them yes, but in malice? No.   

Oh and one more.... GGGGRRRRRRRRRRRRRRRRRRRRR

Day 732

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

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

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

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

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

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

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

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

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

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

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

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