Blogging @ GetSkinHelp.com

Over the last couple of years I have had the pleasure of doing some work with the GetSkinHelp team, and I’m pleased to continue! Wrote a blog for them – click here to read:

What to Expect at the Dermatologist

GetSkinHelp is leading the charge when it comes to digitizing the complete patient circle-of-care.

Not only are they providing quality virtual services across Canada, but they are collaborating with government agencies and hospitals to bring their technology and services to more people.

GetSkinHelp found its footing amid the Spring 2020 lockdown, when Dr. Colin Hong saw a surge in people coming in for skin cancer. Teaming up with entrepreneur, Keith Loo, the two began planning how to help patients right from their own homes. From there, what started simply as an online skin cancer screening tool, has quickly amassed to become a company that covers a variety of skin conditions.

They are also working to demystify the Canadian healthcare sector, particularly as it relates to dermatology, chronic skin conditions, and skin cancers. They investigate how drugs are developed, how AI will affect healthcare, and the forces at play in society that affect our wellbeing.

Some of the challenging questions they investigate include:

Why are there so few Dermatologists in Canada?

And

How much do you think it costs to remove a melanoma?

I'm fascinated to learn the answers to these questions - much of it is news even to me!  So thanks for your great work GetSkinHelp, I look forward to continuing to support your initiatives.

To learn all about how the GetSkinHelp app works click here to go to their website.  They also have their informative discussions and interviews on their youTube channel, and their podcasts are on Spotify and iTunes

Countdown to Australia

Next month I will be attending the 9th World Congress of Melanoma in Brisbane, Australia, as the representative of Canadian patient advocacy group Save Your Skin Foundation.  This four-day congress serves as the meeting of world leaders in the field of skin cancer research, prevention, and treatment.  I will be attending sessions covering all of the latest news and topics in melanoma and other skin cancers, and I will bring this knowledge back to Canadian patients. 

In conjunction with the congress, I have the honour of sitting on a working group in the Global Coalition for Melanoma Patient Advocacy, in which we will continue the work spearheaded by Melanoma Research Foundation (MRF).  I have followed MRF since my own diagnosis, and celebrated their work from my corner so far away; namely, this year in May was the first annual World Melanoma Day.

My itinerary for the week is pretty much booked.  In addition to the main plenary sessions discussing melanoma, I have chosen sessions which speak to my personal experience and interests, as well as those of Save Your Skin, as we want more detail in the following areas:

• Advances in Merkel Cell Carcinoma (a rare but very serious form of cancer)
• Basal Cell and Squamous Cell Carcinomas, Actinic Keratosis, and if I can, Uveal Melanoma (a.k.a Ocular Melanoma)
• Surgical management of Stage III melanoma (directly relates to my scars)
• Immuno-Oncology in melanoma
• and one that I REALLY want to know about so I can put to rest the controversy - Sunscreen: Bioavailability and Toxicity (this topic was always on my mind in my tree-hugger days, and it is still a common question asked to SYSF)

My brain is going to be SO full!  I must admit, in the almost-year that I have been working for Save Your Skin, I have allowed myself to be intimidated at times, by the science and politics behind what the Foundation does, but as I buckle down and study it piece by piece, I realize I know far more than I thought.  My colleagues have been patiently teaching me, and I have been soaking up the information but now I find myself actually being able to apply the information to my own experience with melanoma, and it makes sense.  

I was there (still am, of course, my 6-month CT scans are Monday in fact) - I know what they're talking about, I have done my time at Sunnybrook and analyzed every word my medical team has told me over the years.  Now I get to learn from the best, about people just like me, and I understand. It is science - and I'm okay with that - thanks Kathy! ;-)

Aside from the conference, I am taking a day to go hug a koala.  IN AUSTRALIA!!!!!          :-) :-) :-)   #spoiledgirl #gonnawearlongsleeves

 

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22 days remain in my countdown to Australia, and I am reflecting on how this has all happened.  Three years ago at this time I was recovering from extensive surgery, my family and friends were looking after me, I was heading into my third systemic immunotherapy treatment, and I was in a psychological tailspin.  I had no idea whether or not I would survive to see any semblance of the future I had hoped I would have, and fear overtook most of my days.  

Step by step I walked out of that place, I worked to overcome those challenges, I leaned on the supportive people in my life, and I got back out there.  And I talked about it.... blah blah blah... you already know, I talked.  Blogs, youTube, radio, TV, magazines, speaking appearances, more blogs: it gave me something constructive to do with my cancer experience.  When I realized that there were others like myself, others navigating an advanced melanoma diagnosis with the same mysterious dark cloud over their future, I wanted to share.  I wanted to reach out and help them know they were not alone, and I wanted them to tell me it would be okay too.  Which they did. And still do.

Now I have the honour of being able to help others through their skin cancer journey on a grand scale.  I will go to Australia, attend the World Congress of Melanoma, fill my brain with all the latest news from the world leaders in this field, and bring it back to Canada in the form of reports from Save Your Skin Foundation.  Not bad for a humble little patient like me... as if I'm not already grateful enough just to be alive.  

Thank you Save Your Skin Foundation, for bringing out the best in me, and for encouraging me, now that I live permanently outside my old comfort zone.  Thank you for posting my first guest blog, it all started here:

 

Understanding Your Pathology Report - SYSF Webinar

Last week Save Your Skin Foundation facilitated a very informative webinar with Dr. Alan Spatz, Director, Pathology Department, Jewish General Hospital & Professor, Pathology and Oncology, McGill University. 

To diagnose diseases such as cancer, a sample of tissue called a biopsy is taken from a patient and examined by a pathologist to determine if cancer is present. A pathologist will then examine specimens removed during surgery (resections) for conditions such as cancer, to determine whether the tumour is benign or cancerous, and if cancerous, the exact cell type, grade and stage of the tumour. The pathologist, who is a member of your medical team, writes the pathology report that your treating doctor uses to provide the best care for you as a patient. In this webinar, Dr. Alan Spatz,Director of the Pathology Department at the Jewish general Hospital in Montreal, will provide insight on understanding your pathology report so that you can play an active role in your treatment. (source: SYSF)

When I was newly diagnosed with invasive nodular melanoma, I did not know where to turn for more information about my disease.  I was "banned" from googling it, so I asked every Physician I came into contact with for an explanation of the bizarre-looking terms on my medical reports.

After watching this webinar last week I am happy to report that my Oncologists and Fellows and my Family Physician all explained my pathology reports very well.  Consistent answers have led to my thorough understanding of the condition of my melanoma and it's effect on my body, and this was all reinforced on this webinar Understanding Your Pathology Report.  

I highly recommend anyone diagnosed with skin cancer at any stage watch this.  It is detailed for sure, and may even be a bit intimidating for someone newly diagnosed, but you can always bookmark it and check it out at a later date.  

I particularly liked the diagrams of microscopic samples of the various stages of a skin cancer, include basal cell carcinoma, squamous cell carcinoma, and melanoma.  Also, this is the first image I have found on the internet of my type of nodular melanoma, the black one on the right (gross), though mine was larger and had an irregular border.  Blech. 

Anyway... the other details I found of interest was the explanation of HOW skin cancers are defined, and how the classification method for each of the factors that make up a diagnosis, are universal around the world.  All Pathologists use this method of defining each detail, ie. Breslow thickness (anything over 1mm in depth is considered invasive... mine was a 12.5mm).  

Please click here to watch, to register only your name and email address are required, then it goes right into the webinar: https://attendee.gotowebinar.com/register/4021315721502861060

Thank you yet again, Save Your Skin Foundation!

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.  

Family Physician's Role in the Cancer Journey

I have the relatively unusual distinction of having ten medical professionals involved in the care of my two primary cancers: metastatic melanoma and papillary thyroid cancer.  Among this collection are Oncologists and Surgeons of various specialty, a Dermatologist, an Endocrinologist, a Gastroenterologist, and even a Naturopathic Doctor. 

Add the complication of long-distance travel to see said professionals, and my calendar notebook is a kaleidoscope of sticky notes and forget-me-nots.  Names, phone and fax numbers, dates, and directions to offices in the maze that is Sunnybrook Health Sciences Centre crowd my notes and cause me the odd moment of confusion.  

There is one individual who tracks all of this even better than I do, and that is my Family Physician, a.k.a. Primary Care Provider, or the Saviour.  She has known me for years, she has cared for my children at every bump and (bone) break, and she gives me straightforward advice about cancer.  She is organized and has detailed notes about my health and history, and she magically delivers questions in a painless way, even when I am trying to dodge her about something. 

She gets all the shit jobs really; she was the one who had to tell me - TWICE - that I have stage 3 cancer, she kicked my butt into gear when I was panicking about surgery, she closely monitors my thyroid hormone levels, AND she is in charge of my day to day complaints (of which there are many, if you can imagine!?  - I should issue a formal apology to the other patients in her practice who have had to wait after one of my "quick" appointments).

She has spent countless extra hours researching treatment options for me, she translates medical speak into common language, and she asks the questions that need to be asked, of myself or of other doctors in my circle.  She patiently explains my CT scan or bloodwork results, and she always offers to print them out for me.  She goes above and beyond by expeditiously filling out employer and insurance forms, and she even communicates with me after hours if we have an urgent concern.  

She also maintains an air of reality about my situation; for example, when I was first diagnosed I exclaimed that I wanted to have every cancer test known to mankind, and she gently explained to me all the tests I would not need as they are not related to my particular type of diagnosis.  She also said some of the tests could wait as I would become simply "Doctored Out."  And she was right.  I have been pacing myself on the peripheral tests unrelated to melanoma, and I am definitely Doctored OUT.  (I say that with all due respect of course)

I am fortunate to have the thorough General Practitioner that I do, as I am aware that it isn't like that for every patient.  It could be considered that we have a shortage of GPs in Ontario Canada, so many patients do not have the luxury of a choice in family physician, let alone the quality of care they may (or may not) receive.  

My advice to a patient in a dubious or uncomfortable relationship with their family doctor is to be prepared, stay strong, and ask LOTS of questions.  

It can be intimidating to be in the clinical office, but being honest about your fear or anxiety will help build a straightforward rapport with your doctor.

• Make detailed notes of any questions you may have, and prioritize those questions just in case you aren't able to get them all answered if there is a rush.
• When calling to book your appointment, be polite but firm with the assistant answering the phone.  They are trained to be gatekeepers, carefully guarding the precious resource that is their employer, but if you treat them with respect and explain that you may need extra time with your doctor in order to not go over the allotted time slot, they will usually soften. 
• If they cut you off on the phone?  Call back.  
• If that still doesn't work?  Lay the "Cancer Card" - softly ask them how they might wish to be treated had they been diagnosed with a life-threatening disease.  They cannot withhold the care of your physician.  Yes we have to be considerate of others' time and availability, but we also have to fight for ourselves.  To me, self-advocacy is as important as waking up every morning, so every now and then I place a well-timed hissy fit.  
• Arrive for your appointments slightly early, and be prepared in case you have to stay later if the appointment is delayed.  Not always easy to coordinate rides and other appointments etc., but it is imperative to keep a cool tool at these times.  What else is more important than your health care - Nothing!
• Ask for a second opinion on the big stuff - or on any stuff.  You're not going to hurt anyone's feelings, you are simply looking after your own best interest.  All's fair in Canadian health care. 
• Be organized, keep notes, have a friend or family member with you at appointments whenever possible.
• Follow your Dr.'s instructions, unless your gut tells you otherwise - and if it does tell you otherwise, ask more questions. Let your doctor know that you don't feel good.  They are humans after all... just like us.  

The Family Physician is an integral part of the cancer care journey, or any extended health care situation.  They coordinate, monitor, translate, advocate, and guide our best interests.  Whether or not we want to be in the situation we are in, we are best to make friends with our primary caregiver, as they are there for the long haul.   

Hard to see in this very well-put graphic, but that blue horizontal arrow at the bottom?  That is the Family Physician, in the cancer journey. All the way through it.

 (click for larger image, it will take you to the website of the Ottawa Hospital, with an excellent article all about navigating the cancer journey)

Note:  

These points are just some suggestions based on my own experience with cancer care and the medical system, in Ontario, Canada.  Some or all of them may or may not be helpful if you are a patient of another affliction(s) and/or you live in another part of the country or world.  I wish you the best in whatever medical journey you may be on.  

And for the record, I am not a medical professional... I'm just doing time in the system. 

And to the lovely Dr. E MD, this post is dedicated to you.  Thank you for all of the crazy and wonderful things you do for my family and me.  You serve as an example of what I wish every cancer patient could have in their family doctor, their family member.  xoxo

Prednisone

Here we go.  Yesterday I began a course of prednisone to attempt to help my body stop the severe and often unpredictable tummy trouble with which I have been struggling.  I have been trying to avoid this drug for over a year, and yesterday my medical oncologist phoned me (again) and strongly advised (again) that I get my sorry butt to the pharmacy and take the prescription she faxed to Meaford.  

It is nasty stuff, I have read about the side-effects and I know of several friends' horror stories about it.  This is a pharmaceutical that is evil to the human body. I am inspired to write a blog post about a patients right to refuse any given treatment, and how self-advocacy works in the medical system.  I know I can refuse this drug, but I also have to balance the medical opinion of my very experienced highly trained doctors.

My chief oncologist explained a course of prednisone like this:  for someone in my situation, who had eight treatments of a very potent immunotherapy, my immune system was kicked into overdrive and seems to have stayed there.  

Under the influence of immunotherapy, the body is triggered to fight melanoma cells, which it seems to be doing, as I have not had recurrence since August 2014.  Well it doesn't "fight" the melanoma cells exactly; the true medical explanation is this: ipilimumab is a fully human monoclonal antibody, blocking CTLA-4 receptor and potentiating T cell activation.  

Along with this trigger, the immune system can start to attack the body itself, usually beginning with the intestinal system.  So now I need the help of a powerful steroid to calm the inflammation in my digestive system, tell my body to stop being upset in there.  

Prednisone belongs to the group of medications called corticosteroids. It is used to treat a number of conditions. It is more commonly used to treat allergic reactions, some skin conditions, severe asthma, and arthritis. It can also be used to treat steroid deficiency in the body, certain blood disorders, certain types of cancer, and ulcerative colitis. It works by reducing swelling, inflammation, and irritation; by suppressing the body's immune response; or by replacing steroids when production by the body is deficient. (for more info click here)

I will take a 15-day course of this drug, beginning with 50mg (10 pills) per day for three days, then 8 pills per day for 3 days, 6 pills for 3 days, 4 pills for 3 days, 2 pills for 3 days, then stop.  The pharmacist explained that the first large dose should boost the body's ability to calm the inflammation, then the dose tapers off gradually so that the body realizes that it needs to produce it's own steroid (still/again?) to do the job itself. 

When I signed up for this trial I knew a future of ulcerative colitis was a risked side-effect, but dying of melanoma was the alternative, so I did what I had to do.  I went for it, figuring I'd somehow escape the chances of the bad or long-lasting effects I had been informed were a possibility.  I am in no way upset with my physicians, they are not responsible for this, and I am not angry with them.  

I am simply upset that I have to take this shit.  Weight gain and severe mood swings are just the things I have been trying to step away from!  And now I am set back.  I spent most of yesterday in tears; I have been just starting to feel better about how to manage my melanoma going forward, start thinking there may be a light at the end of the tunnel and then I get pushed back down again. Get a reality check.  Things will never be better again. Normal is gone. Carefree has checked out of the building.

My lineup: prednisone, and a "tummy protector" to help reduce stomach damage from pred, then daily vitamins - B12, iron, calcium, and the special D. Plus the two meds on my nightstand that I was too pissy to photogragh.

I took the pills at lunchtime and sure enough the predicted nausea remained until bedtime, where insomnia took over.  I am dizzy, very thirsty, my hands are shaking, super hot/sweaty last evening now freezing this morning, and I feel like I am already puffing up.  My family physician said that the weight gain or puffiness associated with prednisone is water retention, and that when I am done taking it the puffiness will go away.

  

The trick will be to not increase eating, as the possible side effect of increased appetite goes hand in hand with the spikes of energy and/or perceived euphoria from the prednisone.  Family doc said that my house will be spotless because I'll have so much energy!?  HA  I'd like to see that.  That is a positive though I guess, as my fatigue has still been a problem.  

So the next few weeks around here will look this: Fat me running around the house brandishing the swiffer, alternating between crying and yelling at my family. Oh yes and let's not forget the constipation... diarrhea be gone, but the alternative?  Great.  :-( 

Hopefully we achieve the goal of stopping the intestinal distress, and I can get back on here in a few months lamenting how much better I feel and wondering why I ever fought against the prednisone in the first place.  If it doesn't work however, I will be referred to a gastrointestinal specialist to investigate further.

In the meantime, I will deal with this step along the journey privately, stay tucked away at home for a bit, and just suck it up.  I have already been pretty antisocial, and hibernating has been therapeutic for me and for the girls, but for the next couple of weeks I am going to lay low and just stay in my corner licking my wounds.  

 

 

 

Article © Natalie Richardson 2016

Relaxing Saturday

Another busy week in the house of melanoma momma-ing, wow I am glad I'm getting some energy back as these days make me wonder how we survived the last year and a half while I was napping!?  I still celebrate the small accomplishments but I really love it when they add up to more than the "new-normal" standard I set for myself.  

Couple of random updates from here:

I have lost eight pounds!  Yahoo, I have been paying very close attention to my nutritional habits for the last few weeks, and I am inspired by my body's quick response to the less meat, less alcohol, no wheat, dairy, or sugar regime that I have dug out of my back pocket from years ago.  

I am not new to weight-gain weight-loss due to life or health circumstances -having twins pretty much surrenders ones body to an involuntary increase in fluffiness that takes hard work to remove - and this post-cancer-treatment weight gain is no different in my mind.  I am determined to feel better, get my strength back, resume my graceful-swan mountain-goat-like athletic ambition into hiking and biking... okay, I may be exaggerating a bit there HA! Anyone who knows me knows that I am the clumsiest duckling out there.  I try though, I do try.  LOL

This week I visited my family doctor for a mid-point check-up, I don't go back to Sunnybrook until March so I wanted to have a local run of bloodwork to see how I am doing this far after treatment.  With all of this vitamin-taking and liver resting I wanted to see if my bloodwork reflects the benefits I think I am feeling.  I needed to check in on my vitamin D and calcium levels (I am terrible at taking those hateful supplements) and B12 (wanted to see if the tablet chewing was really working) and thyroid hormone/supplement levels.

  

We checked everything top to bottom and great news, everything is perfect!! Motivation to take that darn calcium!  The only thing a bit low is my Iron...again.  I struggled with that years ago, now time to boost it again I guess.  That's fair, I found an iron supplement I actually tolerate well:

So that's good news, I am detox-ing and de-puffing, which is helping me with the de-stressing.  Vitamins supporting the body systems that have been out of whack for so long, herbal teas to reduce fluid retention and cleanse the liver, and apple cider vinegar to do everything it seems to do, all topped off with essential oils for pain-relief instead of analgesics, I am a happy camper.  There is hope anyway.    

One snag is the tummy trouble.  My medical oncologist (The Boss) is concerned with the prolonged bout of Imodium-need I am having let's just say, and she is urging me to consume a course of Prednisone to try to stop it.  I am desperately against adding a new medication to my regimen now that I am working so hard to clean up post-treatment, especially a medication as harsh as that one.  

Prednisone is a cortico-steroid that can reduce inflammation in the bowels and stop or reduce the damage that has been done by the pacmen, but the side-effects of it include weight gain, mood swings, and a host of other scary things I am trying to leave behind.  

I am putting her off for now as I feel we are still too close to my last treatment to get a good indication of whether or not this side-effect will clear up on its own.  I want to wait, I am willing to see if it stops by itself.  My bloodwork shows I am doing okay, and I am feeling quite a bit better, so the bathroom trips seem not to be affecting my general health.  

I knew colitis was a risk of the ipilimumab treatment, but I am not going to call it just yet.  I am quite aware that it can take months, years to recover from the crap I went through. Pun intended.  Family Doc and I will confer with The Boss if it comes to that point, and in the meantime I am going to get a third opinion from a Naturopath in Collingwood that my CCAC Nurse recommended for colitis-symptoms specifically.  

Dietary-wise, I have been cooking a lot.  Funny for a person working on weight loss, but indeed, I have been cooking and trying new recipes, especially for soups.  With trying to eliminate foods that may aggravate or trigger my tummy trouble, I have been having a lot of fun experimenting with new recipes again.  I used to do this a lot, and it's nice to be back.  

It is such a phenomenal pleasure to cook in my new kitchen, everything is so easy to use, keep organized, and to clean WHOA! Dishwasher is a whole new world.  I have satisfied my cravings for veggies with spicy soups such as this Coconut Curry Sweet Potato soup ....extra yummy with pumpkin seeds or hemp seeds as a garnish.  I am going to blast that cancer with beta-carotene, omegas, and alkalinity!

  

Okay... so body details done, I have lots to report on the mental/emotional side of things too.  I was a bit cranky this week but (maybe that was full moon related?) overall have been feeling pretty productive.  The kids seem to have been extra busy/needy and I think I handled it all right, plus I have been thinking a tonne about my book and the research I have been doing for it.  The preparation for writing is just as important as the writing itself, and I have found a couple of new avenues for inspiration.  Instagram for example, has been a new pet addiction for me this week.  There are SO many creative people in this world, and I am having fun connecting with them! 

I have also been thinking of blog updates as that all goes hand in hand, in my experience.  My book relates to my blog but they will be two separate entities so I am carefully planning how I will mesh the two, or how I will write publicly in the meantime.  I have been reminiscing quite a bit, about my Italy trip and photos, and my old blog which displayed much of my perspective on environmental issues, family environment but also Earth environment.  I was rooting around in my old laptop files and even managed to find a screenshot of my old blog.  Weird!  I had been trying to remember what it looked like and voila! One snow day last week I found this:

I found my old blog post about making sushi as well, I may have to dig it out and re-post.  The girls have been bugging me since the kitchen reno was done to have a sushi party for their friends.  I fear I am rusty at rolling but I guess I won't know until I just jump back in?  I'll keep you posted.  haha

Well, my simmering Spicy Thai Coconut Chicken soup is calling my name, so I need to go for lunch.  Then a walk with Reese, and for supper I am thinking of trying out a Jamie Oliver recipe for a dish with the fresh fennel I bought last night.  I am quite content to have my vegetarian recipes back out, feels good.  

  

(Thanks to my cousin for the photo, via Instagram xoxo)

Happy Saturday!

December

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Week 68 and the R-Word

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

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

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

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

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

I am in remission.  I feel relieved. 

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

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

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

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

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

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

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

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

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