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!

Innovation is a Journey

Quick post to share a campaign that just launched: Innovation is a journey

I am honoured to have been part of this project and to support the work being done by life-saving pharmaceutical companies in the cancer space. Their research and development in innovative medicines is invaluable. 

Thank you BMS - you saved my life!

Watch the video

There is also an accompanying article for which I was interviewed, please feel free to check it out, here. 

“Even if something only works temporarily, that option could buy time until another treatment — and potentially a cure — comes along.” 

Wise words Mike, thank you. We live by this. 

Queen's Park 2.0

Again this week I had the opportunity to visit Queen's Park, a little more than two years since the first time the girls and I were invited by Save Your Skin Foundation to attend a reception and presentation on the landscape of melanoma treatment in Canada. 

In fact I was there twice this week, once to meet with our very own Bruce-Grey-Owen Sound MPP Bill Walker, and a second time to attend a breakfast event to inform on the topic of immuno-oncology in cancer treatment.  One of the big parts of my cancer story is that I was lucky enough to receive immunotherapy treatments in the adjuvant setting, following my stage IIIb nodular melanoma diagnosis in April 2014.  I am a special snowflake in this regard, as I received it by clinical trial, when it wasn't (and still isn't) available in Ontario - or Canada.  It quite possibly saved my life; with each month that passes I celebrate that I am getting that much more time than I was first given when diagnosed.  

Anyway, in the name of sharing the importance of a story like mine in order to to give hope to others, and to advocate for better access to these life-saving treatments, I was invited this week to represent Save Your Skin at the "Queen's Park Advocacy Days" in Toronto.  This event was coordinated and hosted by Canadian Cancer Survivor Network (CCSN), and included a series of advocacy meetings with MPPs and other provincial government advisors and representatives, to discuss the importance of timely access to the cancer treatments that Ontario patients need.  

CCSN is a patient organization based in Ottawa, which works on behalf of all cancer indications, recognizing the value of immunotherapy treatments in various types of cancer such as lung cancer, some types of lymphoma and myeloma, and even bladder cancer.  Melanoma is the poster child for research in immunotherapy, as it was among the first to respond to this type of treatment, one that uses the body's own immune system to fight cancer cells.  

CCSN President Jackie Manthorne delivered heart-warming opening remarks at the breakfast event, and then we heard from an Ottawa-based Oncologist as to how immunotherapy works and what benefit it holds for treatment of lung cancer, as well as Sudbury MPP France Gélinas who commented on the need for improvement in the Ontario healthcare system, and the importance of the patient voice in our drug approval process across Canada. 

It was my first time seeing Jackie speak, since I first "met" CCSN online in 2016, and she did a great job of addressing the patient advocates in the room, as well as the government folks who took the time to attend the event.  Any opportunity to connect patients with decision-makers is a great one.  I was pleased to represent Save Your Skin Foundation as a friend of CCSN, and enjoyed seeing my colleagues from fellow patient groups such as Lung Cancer Canada, Myeloma Canada, and Lymphoma Canada.  We often work together in this field and join voices at events such as these.  

Another group we have crossed paths with in the past is Bladder Cancer Canada, and I had the pleasure of chatting with one of their representatives this week at both meetings.  Bladder cancer survivor and incoming Chair of their Board Ferg Devins, a communications strategist in Toronto, was my advocate-buddy in meeting with Bill Walker, and an experienced navigator of the many hallways and entrances/exits of the "pink palace" that is the Queen's Park main building.  We had a productive discussion about cancer care in Ontario with Bill, and I expect we will collaborate again in future. Shout-out to Ferg - and thanks to Bill Walker for generously offering for us to use his parking spot yesterday! (super huge help for this non-city girl trying to find a parking spot anywhere in downtown Toronto agh! - and a nice bonus for those of us who wear stylish high heels to meetings ;-) 

I also had the honour of bringing my daughter Cass with me, so she saw first-hand what I work on in my job every day.  She was pleased to realize she understood what everyone was talking about, and she even had a nice conversation with a curious MPP who asked her what it was like being the caregiver of a cancer patient who received "this immunotherapy stuff."  

She had expressed some nervousness on the way to the event, worried that she might not know what to say if anyone asked her a question, but I assured her she would be great, as she has first-hand experience with the topic at hand... and sure enough she was a fantastic spokesperson!  And who knows, she may have touched a nerve with the gentleman she spoke to, and he may have left the meeting with just that little bit more insight into the reason for the event and the need for government to understand and work to improve. 


After the immunotherapy information session we were invited to attend Question Period!  Thanks to CCSN and to Bill Walker MPP, Cass and I, along with my colleague Louise Binder, Health Policy Consultant (Toronto) with Save Your Skin, were introduced in the Legislative Assembly of Ontario.  It was awesome to hear our names and that of Save Your Skin Foundation go on record in Ontario, an experience I was happy to relay to my boss and friend Kathy Barnard, President & Founder of this Vancouver-based group. Save Your Skin Foundation is a national not-for-profit patient organization, and we were all thrilled to be recognized in Ontario.  We support patients across the country, and have many friends in Ontario, so it was a sweet moment to make it official.

Was interesting to witness Question Period too, especially the day after the budget dropped - woo hoo lots of clapping and table-banging theatrics between party representatives! You can view archives of the Question Period HERE. Of course we couldn't take any photos inside the chambers, but at that link you can see what we saw.  Cass and I concur it was worth leaving Meaford at 4am to travel to!   
I also got a look at the new Minister of Health and Long-Term Care for Ontario, so I can picture who I will be addressing in an upcoming letter about melanoma patients' needs in immunotherapy treatment.  :-) 


A few more pics from the day, enjoy...

 

Queen's Park, Toronto, Ontario, Canada

Oh and as we were walking around the outside of the building too, and I was oooh-ing and ahhh-ing about the architecture and lamenting the history of this building, Cass sweetly breezed past me unconcerned, and with a flip of her hand said "MOM... please remember I just travelled to EUROPE!"  LMAO - point made.  This is not Gaudi.  But I do appreciate the history of our local capital.  Huff.  ;-)


PS - the kid did have a great trip to Italy and Spain, we all survived. LOL  I am proud of her for putting herself far outside her comfort zone and achieving that trip (and daily gelato tastings!)  And I am proud of her twin, for holding her own while her sister was away, and for going to school yesterday while Cass and I went to the city.  Claire - I will ask Mr. Walker for another opportunity to visit Queen's Park, so you too can see the spectacle that can be our government in action.   Love you both!

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

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....

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.  

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.

As the Stomach Churns...

*insert theme music from old American soap opera As the World Turns*

The other day my Aunt commented on one of my facebook/blog updates:  "Another interesting episode in 'The Life and Times of a Fighter'" and since then I have had this theme song stuck in my head.  Thanks Auntie! ;-)  

I appreciate the complimentary sentiments, and I was thinking on my drive home from the city last night that I have no choice BUT to fight.  There are certainly times (and I often publicly air them here!) that I am sick of the fight, but somehow I know I have no choice but to rage on... my only alternative is to just lie down.  And I've never been great at that.  

Yesterday was my three-months-of-work-fit-into-one-day trip to Sunnybrook for CT scans and oncology consults.  For CT scans at 1:30p.m. I had to be there at noon to register and get my bottle of disgusting chemical water juice stuff.  

To drink the litre of stuff they advise you drink a styrofoam cupfull every 15 minutes.  YUCK  I still prefer the old-school chalky liquid I had at my first CT scan in Collingwood because it's a much smaller bottle and you can just chug it and get it over with.  Well at least I have picked up some tips over the course of the last eight CT scans I have had, and they look like this:

 

Lovely CT nurse said I can add flavouring to the water, and she suggested I bring a glass or cup other than the styrofoam they provide. Bingo!  I was able to drink this jug with less than usual interference from my gag reflex.  And nobody batted an eyelash about me carrying this wine glass around the hospital with me!  Gotta love the anonymity of city dwelling.  

I took my cocktail through the tunnel at Sunnybrook and up to the Odette Cancer Centre to multi-task my drinking time by registering for my late afternoon appointment with my medical oncologist.  This involves routine bloodwork (only three vials this time!) as well so I got in queue while sipping my mango peach beverage, had my blood drawn, then found a comfy spot downstairs in Odette to wait until 1:30.

I arrived back at CT with empty wineglass in hand, and prepared for another needle poke for the contrast dye which is injected at a certain point in the scan.  

Typically this part of the day doesn't phase me but for some reason when the nurse tried for a vein (in the less favoured arm) it hurt SO much!  She couldn't find the artery but must have hit something because I immediately broke into a sweat and the room started to spin.  I tipped over, barely escaping fainting, thankfully I was able to lie down on the stretcher before I tipped forward right in her lap.  The dizzies calmed down once she removed the needle from my arm and was patting my forehead with a cold cloth.  Geesh... some CT pro I am!?!   Embarrassing... humbling.  Scary.  

Got the IV/needle all set up in my other arm and made my way to the waiting room, already feeling nauseated from the jugga stuff.  It commonly makes me feel sick, at both ends if you know what I mean.  I always hope the CT machines are running on time so I can run to the washroom ASAP and don't vomit my hard-earned glow worm juice before the scans are taken.  

As "luck" would have it, CT was running behind... It was a dizzying experience in a hot stuffy room with standing room only and a gag reflex being kept in check only by my awareness of the mustachioed dude beside me wearing just a hospital gown.  I was afraid to make any move for fear he might jump up to try to help me - or avoid any dashing accident I might make?!

I felt as badly for the staff as I did for myself with that waiting room full of people... some days you win, some days not so much. But they handled everyone with smiles as they always do.

Finally it was my turn in the huge machine, a fresh breath of air in the cool technology room.  Lie down on the platform thingy, zip back and forth through the giant doughnut, hold breath, breathe, arms up, arms down, IV needle out, and done!  Had a little chat with the Medical Radiation Technician about the schooling for her job (research for Claire), and off I went back through the tunnel to Odette.

My blood sugar was getting a bit low at this point too which wasn't helping my nausea, so after my beeline to the washroom I nibbled on the sandwich I had brought from home and tried to quell the burning throat sensation from all of that Mio (psychological maybe?).  Waiting for my oncologist appointment I was able to collect my wits, touch base with home, and catch up on my social media.

Into medical oncologist's room and updated her on the latest happenings, as this was the first time we had seen each other since the prednisone attempt.  She was disheartened to hear that my tummy trouble started up again so quickly after taking the prednisone, and she commented that perhaps she should have kept me on it for four weeks instead of two.  *GASP* 

I told her about my conversation with the naturopathic doctor and the probiotics I am taking every night now, and she said she appreciates the effort and yes the probiotics will help any imbalance in the gut, but the damage done by the immunotherapy is still a different animal.  

It's a chemical deal she said, no dietary influence will remedy it if there is damage to the intestinal tract.  SOoooo... off to a Gastroenterologist I go.  No ifs ands or buts about it.  I must.  And a scope will determine the extent of the damage plus they will take biopsies (enter my second near-fainting spell of the day).  

There is no getting around The Boss.  What this lovely lady lacks in physical size she makes up for in quiet force.  

She said we have to get to the bottom of this problem (so to speak) so that I don't end up with further damage and end up in surgery for a perforated bowel.  (I am NOT looking that up to find out what that is... I'll just take it for how it sounds) (Bad.)  I guess my foolproof plan of taking imodium for the rest of my life is not so foolproof after all.  Where my use of ipilimumab ends, my investigation of ulcerative colitis begins.  #melanomaSUCKS

I was open about my reluctance to have a scope etc. and she calmly answered my questions and patted my knee reassuringly as she always does.  

I seriously don't know how she keeps being nice to and caring for me when I am such a pain in the ass. (pun intended!) I give her a hard time about this issue every time I see her.  I can't help it!

I gave up my protest while she examined my breathing and felt around my remaining lymph nodes, until she got to my sensitive neck/throat.  Since thyroidectomy I have had enlarged nodes and some bumps in my neck that we have been watching on CT and ultrasounds.  I asked her if I should see my head and neck surgeon as I did not have a follow-up booked with him.  I was content with her exams and her scrutiny of my quarterly CT scan images, but, always aware of the importance of self-advocacy, I asked just in case.  

She said "Hhmm yes good idea, hey, he is here in clinic this afternoon, how about I go see if I can snag him to come take a quick look?"  Really?  Fantastic yes please!! And sure enough, not 15 minutes later I was in consult with my thyroid surgeon, completely unplanned but very much appreciated!  

I have said before that I feel Sunnybrook has rolled out the red carpet for my family and I in the last two years, and my sentiments were just reinforced yesterday.  Amazing... thanks peeps.. wow what else can I say.

Quick chat with my ever-efficient surgeon and he gave me what he called a neck massage (with the ultrasound machine on a cart). Awesome.  He is really the only person I want poking around my neck anymore so this worked out very well.  

He examined the bumps and ruled out cancer recurrence by the visual aid, but said he would also look at my CT scan to double check.  He said it is some scar tissue from surgery and will likely remain for the life of my neck.   Okay, thank you, I trust him.  

All that said and done, I got my shit together and hit the dusty trail.  Well, the 400 Northbound to go home.  Another whirlwind trip done, and I remain grateful for the strength to be able to take myself down and back like that.  I know there will come a day when I can't, but for now I'm on it.

I am paying for it today however, feel like I've been hit by a truck.. exhausted and extra tummy trouble.  

 

Tomorrow I head to RVH in Barrie for radiation oncology consult (to keep me on file there and always provide a built-in second opinion) and my therapist visit.  

Hopefully I will sleep better tonight than I did last night.  I try to pace out my appointments a bit better than this week is planned, but CT scan is a biggie and therapist at the RVH Cancer Centre is also worth the schedule.  The girls are joining me tomorrow as well and we are meeting friends at Gilda's Club for a visit too so it will be a well-rounded day.  I predict takeout for supper!

Article & Photos © Natalie Richardson