What's in it for me?

Well, it's been almost a month since the launch of the #NotJustSkinCancer video, and it has reached over 53 000 people on YouTube so far, with additional media coverage on radio, TV and in print. The intensity of the campaign is going to move on across Canada, with opportunities for other melanoma survivors to share their stories, and other audiences to be reached.  I will happily continue to watch it all from the comfort of my home.  

I have enjoyed being part of it, and I appreciate the amount of opportunity it has afforded my writing goals.  Everyone involved in this project has been wonderful, and I am grateful to have been able to share in it.  

I have also appreciated the other benefits I have received from working on this initiative:

• hopefully helping others to feel less "alone" than I did upon melanoma diagnosis
• education & advocacy; I'm not out of the woods, and my daughters are now at risk of a melanoma heredity, so I want to do everything I can to make sure there are treatments if and when we need them in the future (I never claimed this volunteer effort wasn't also for self-preservation!)
• being a good example for my kiddos: taking action about something I believe in ~ making lemonade out of my lemons
• for my writing career: I finally know what I want to be when I grow up!

And last but certainly not least:

• to see what I really can do ie. energy level, concentration, stamina

I have mentioned plenty of times how I feel that I am not the same person I used to be, especially physically speaking: my mobility is hampered, my leg is damaged, cancer/treatment weight gain plagues me, and I am struggling with the side effects of Reverse T3 hypo-AND-hyper-thyroidism.  

Add chemo brain on top of it all and based on my experience, I am not (yet?) fit to manage a cash office and payroll process for a large group of people who depend on me for accuracy, efficiency, resourcefulness, and quick-thinking.  

The kind of effort I have been putting into the #NotJustSkinCancer campaign is reminiscent of my professional work experience... conference calls, writing projects, statistics, a bit of commuting, public-speaking, organizing, committing to being specific places at specific times.  

I have accomplished a bunch of those items, but at a slow pace and usually from the privacy of home.  I could nap when I needed to, I didn't have to worry about wardrobe or mascara, or keeping a happy face when discouraged, anxious, or tired. 

I have enjoyed testing out my strength and steadiness, both mentally and physically.  Overall I have met most of the goals of my small part of the #NotJustSkinCancer campaign, but not without cost.  I am exhausted.  And I don't think I have really done that much!  Mental energy spent mostly?
It's strange, some days I have the energy of an ENTP Gemini Fire Dragon LOL  but then I am more like a hibernating (cranky) bear for a few days.  It is in line with my roller coaster experience with this disease from the start, but it is frustrating to be still living it every day.   And not to worry A, or anybody, it's okay, it's not irreparable exhaustion, it will be fine. 

I am motivated to keep pushing myself for this cause, for the reasons mentioned above but also for my peace of mind.  I am getting to know my "new self," figuring out whatever it means to say "new normal."  If I can again start running around customer servicing and being intelligent then by all means I will.  And I consider advocating for melanoma awareness a great way to test the waters.

The next few weeks still bring work in the melanoma awareness category for me, as May is Melanoma Awareness month here in North America(ish).  This weekend the girls and I will be in Toronto again for Melanoma Monday, on behalf of Save Your Skin Foundation, at the Become a Skin Checker event hosted by LaRoche-Posay.  

I will be sharing my story to help bring awareness to the importance of skin health and routine checking of skin for moles or irregularities that could prevent a late-stage diagnosis of skin cancer.  

My personal transition from #NotJustSkinCancer to #BecomeASkinChecker is an easy one, as it is all very close to my heart.  

After a couple of cool projects for Melanoma-Awareness-May I will be exploring a volunteer opportunity offered to me by The Cancer Society, participating in a very cool event in the Fall, right here in our southern Georgian Bay neighbourhood!  More to come on that... I can't talk about it just yet.  :-)  

In the meantime of course family life continues, and Sunnybrook appointments loom.  May and June always bring chaos but this year seems to be exorbitant: end of school year, projects to tidy up, 4 birthdays to celebrate, summer jobs to find for 2 teenagers, 3-day trip to Ottawa for their entire Grade 8 class, and... drumroll please... Grade 8 GRADUATION.  Buckle up folks, I'm gonna be a wreck. 

LOL!!

Keepin' It Real

I always try to keep in mind how my blog appears to those who take the time to read it - thank you dear readers, friends, family, medical professionals, mela-homies, writers, publishers... ;-) 

Thank you also to my Grandmothery friends as well, who I know would prefer to hear my news and thoughts in person or by phone, but because they love me so much they read my blog for the scoops, as I ask them to.  Thank you all!  

With this in mind, I want to insert a little something to start the month off with my typical perspective, rather that just links to all of the other stuff.  And there will be more links... I have been asked to participate in a few cool projects that I will be blah-blah-ing about in the coming weeks. :-)

It is no secret that I am proud to be part of the #NotJustSkinCancer campaign, and I have been busy working my social media circuits to help spread the message.  

I have also been writing some guest blogs/articles for other sites - all of which will be linked from here of course.  I am happy to do some media interviews etc. as well, as it is all part of generating awareness of the #NotJustSkinCancer video, and in turn the message it was created to discuss.  

I knew it would be busy once the video launched, and I had prepared my family for a bout of writer-needs-quiet-time and that they'd be seeing only the top of my head over computer until I was done.  The freezer is stocked with frozen pizzas, just saying.  

What I didn't expect was the emotional response I/we have been receiving.  The texts, emails, facebook messages, tweets, phone calls, etc. have been amazing.  *humble thank you*

My friends and supporters seem just as shocked as I was to learn about the negative hashtags such as #SkinCancerDontCare.  

Complacency about skin cancer is scary, and crazy.  But I was there once, and not that long ago.  I get it.  

And yes, it is very emotional for me to react to the discussion in such a public way.  I want to spread the message and increase awareness about melanoma, but I still have the underlying emotional freakout every time I hear the word.  

It's okay though, that is the cathartic piece for me... that is where my passion lies right now: 

1. melanoma prevention 

2. support and friendship for those in the same boat as I

Yesterday afternoon I had a little meltdown.  Flaked out a bit, burst into tears and had to put the computer away for the rest of the day.  Scott patiently listened and poured me a glass of wine.  

I'm okay, just a bit messy over the gravity of the topic, excited about the success of the campaign launch, and a little tired.  Of course a bout of insomnia would hit me this week as well, why not!?

In the meantime though... the rest of life beckons.... 

Wednesday evening Claire delivered her speech in the French public-speaking event at the School Board office in Chesley.  She did a great job of course, this was her third speech at the Board level. I was so happy to be able to be there, as last year I missed it as I was at Sunnybrook receiving my radioactive iodine treatment in isolation.

We had plenty of time to reminisce about her speaking day at York University when she competed at the Provincial level of Concours in grade five.  This week she placed third of the six in her category - way to go Claire!  This year her speech was about what it's like to be a twin.  An identical, mirror-image twin no less.  

Cass and Claire in grade 5, when they both competed at the Board level

Another fun part of this week is that today is April Fool's Day.  Yes.... April Fools Day, and I happen to have a friend (who shall remain nameless for the purpose of this blog) who is a very thoughtful and dedicated PRANKSTER.  

My house apparently decided to dress up in an itsy bitsy teenie weenie yellow polka dot bikini last night!  The wind took some of it off, but that didn't foil my villainous friends' plan LOL!!  This is what we woke up to today:

And last year on April Fools day, my car:

And a few years back:

LMAO!  I don't have any photos of the pranks I attempted to pull off on my April Fools Day friend, not that you would see anything in the photos anyway. A few years ago I "forked' her lawn - stuck 300 plastic forks in her grass - only for it to snow! and cover up all of my handiwork!  I didn't prank my friend last night, the rain scared me away.  But I wish I had!! One day I will be back...plastic forks in hand... April Fools Day can be any day my friend... mark my words.  

Thanks for the smiles and laughter my friend.  
Thanks everyone, for keepin' it real around here.  xoxo

March Break Survival

As usual March Break was a strangely busy week with various kiddos coming in and out of the house ...some family, some temporarily adopted, some small, some grown-up... ALL hungry. Or thirsty ;-) 

Ahhhh March Break.  You exhaust me.  Thankfully Scott cooks a mean meatloaf dinner, and I'm handy at the consistent munchies and veggie trays and baking distractions during the day.  Even the dog was tired afterward:

Last week was a mix of appointments and relax time, including THREE trips to Barrie.  We had an appointment with our therapist at the cancer centre, the girls had a teen night event doing a special art project at Gilda's Club, and Friday night was the night the girls have been waiting for since Christmas... a rock concert.  

Their bestie gave them tickets (Moms too, so five of us in total) to see Marianas Trench, which is a Canadian rock/punk band bordering on "emo." (Apparently teenagers assess emo by amount of black eyeliner is on the lead singer?)  Opening band was Walk Off The Earth, whom I have wanted to see since the release of their acoustic 5-people-1-guitar rendition of Somebody that I used to know by Gotye.  

I haven't been to a concert in a looooong time, and I feared I would be out of practice LOL but it seems we made out just fine (and the MOMS didn't EMBARRASS anybody).  

The music was loud and great and the energy was so fun.  I have been to many concerts, including seeing The Hip at Barrie Molson Centre also, but this was my first all-ages concert.  It was strange but still good, I likely wouldn't have allowed my 10-11 year olds to attend such a show (the language is about as "EMO" as the eyeliner) but my almost 14-year olds handled it just fine.  

Both bands were incredible, and I can say I emerged from the concert a new fan of Marianas Trench.  Adding to the phenomenal volume and cool stage stunts, there is talent and real feeling that bursts out of the shirtless rocker. 

Thankfully the other Mom played chauffeur so it was a lovely treat to be passenger and not have to focus on the road (through the scream-singing of three boisterous teenage girls to the music they had blaring).  Thanks Z and C for the fun night, it wouldn't have happened without you! 

After that raucous finale to the week I remained chill (and quiet!) for the weekend, catching up on random electronic/writing and house work I had neglected over the holiday week.  For a stay-cation in which I worried I hadn't done enough for the kids, I ended up feeling satisfied that indeed I had.   

We had started the week off with a sleepover and ladies' breakfast date with a couple of the girls' friends, and we slipped in some shopping as well as a doggie walk (mud) at the beach, plus a marathon or two of Cathedral World (the boardgame).  We baked St. Patricks Day cupcakes - please know that I should NOT be in charge of the icing, I am a better chef than baker. Cass also invented a creative new dish that has quickly turned into a family favourite: Cassi's Cauliflower and Cheese Carnivore Casserole.  The recipe is top secret, but I can tell you there is a pound of bacon in this thing! 

(that icing was supposed to be shamrock green... yikes I would have been better off to just add cocoa to it and call it chocolate!!)

Scott and I celebrated our "anniversary" on St. Pats Day, we have been through thick and thin together for five years! That is the rose he got me and the clover/shamrock plant I got for him.  :-)

Anyway, I will sign off for now as I have a bunch of thoughts to organize for a piece I have been asked to write for the melanoma awareness project I will be talking a LOT about next week.  In the meantime I will leave you with these random items that reflect my thinking at this time...

 Thanks to @youngcafighter for these 2 memes.... they fit well! 

Keep up your fight #ThyCaSista !

True that @vermont76

#NotJustSkinCancer

I am a "Special Snowflake"

And no, I am not referring to my prematurely grey hair, because of which Claire calls me "Snowball." 

Yesterday I had the pleasure of meeting a new medical professional I have chosen to add to my team: a Naturopathic Doctor in Collingwood referred by one of my CCAC Nursing friends (CCAC says I'm a lifer, they will visit me every month on an on-going basis).  I adore the ND I have seen in the past, but I have chosen to go with this route as I need a specialist in post-cancer treatment care, specifically one who understands the details of immunotherapy and cancer side-effects.  Plus I travel in the Collingwood-Barrie-Toronto direction far more frequently than Owen Sound. 

This lady obviously does know the ins-and-outs of the beast called immunotherapy (for me, it was ipilimumab) - wow what a conversation in the place of one hour!  I am a reasonably informed patient, but I learned stuff yesterday that has already helped me to feel better and understand a bit more of what is happening in my foreign-feeling body.  

After a thorough explanation of my family physician's and medical oncologist's and endocrinologist's words and recommendations, I also summarized my 20-year experience with natural/alternative remedies/treatments and my preference toward using them in combination with a healthy diet of vegetables and "bird seed."  I was hoping to give her a high-level overview of my knowledge and personality so that she would know we don't have to start from scratch, ie. I already know what it is to be a vegetarian, to take vitamin supplements, and to be connected to my mind-body needs.  

I didn't want to spend any of my hour reviewing why I need to take calcium supplements; I want to cut to the chase: I am desperately trying to avoid further use of prednisone, imodium, and anything to do with the word colonoscopy.  

We reviewed all of the things my body, my family, and I have been through in the last two years; please bear with me while I write a quick review, in order, from April 2014 to now:

- diagnosed with stage 3b nodular metastatic melanoma with a relatively high rate of mitoses (spread)

- surgery to remove 13 lymph nodes (4 of which were positive for cancer) in my hip/groin as well as a second surgery to take a bigger hunk out of my original mole (tumour) site to get clear margins, this involved eight weeks strict bedrest, a round of antibiotics and a nerve-repair drug called Gabapentin, a month of recording the contents of daily drainage bottles attached to the interior of my incisions, and a mountain of stress and fear over what was to become of me 

- diagnosis of lymphedema in my right leg

- a 68-week course of 8 treatments of a potent immunotherapy on clinical trial for stage 3 melanoma, ipilimumab (affectionately known in my family as pacmen)

- a diagnosis of papillary thyroid cancer, thankfully not a melanoma, it was a separate, second primary cancer

- onset of side-effects from ipi treatments 3 weeks apart ie. fatigue, chemo brain, tummy trouble

- surgery to remove thyroid gland, tumour on thyroid gland, 2 parathyroid, and 37 lymph nodes (10 of which were positive for cancer)

- staph infection in my thyroidectomy incision, antibiotics, drainage bottle

- lymphedema in my neck and shoulder

- the weight gain really began

- I-131 radioactive iodine treatment to zap any remaining thyroid cancer cells, the result of which shows an intermediate risk of recurrence due to remaining level of irradiated thyroid cells showing on nuclear medicine scan

- CT scans every 3 months, ongoing, with toxic contrast dye injections every time

- a course of Prednisone to try to alleviate the tummy trouble which my oncologist feels should be on its way to disappearing by now.  Of course I would end up in the 20% of patients that end up with high-grade diarrhea from this trial.  I have before mentioned I am "lucky" in this regard.

Apologies to those of you who know my story already, I needed to summarize for new readers and for myself.  

Writing this list this morning has created simultaneously the feelings of stress and tension for all the crap I have been through, but also a feeling of accomplishment for surviving all the crap I have been through (to date).  This is my journey, and though some days it feels like it's never going to EFF-ing end, I still feel motivated to try to improve it: the journey, and myself, inside and out.  

Back to the ND and the Special Snowflake stuff... 

We discussed in detail the issues around my thyroid, ahem, or lack thereof.  Upon thyroidectomy, every patient has to take a daily thyroid hormone replacement in the form of a little pill, to be taken every morning with a full glass of water, one hour prior to coffee or any other food, beverage, or supplement.  

My dose is the highest they prescribe, I knew that.  But until yesterday I didn't know why.  ND explained that this high dose while it may be too much for my body, it is necessary to keep my remaining thyroid cell stuff suppressed, in order to help avoid thyroid cancer recurrence.  Wow okay I didn't realise that before.  I think it is true what they say, in a doctor's office you hear only 50% of what they say (especially in an oncologists office!) - my family physician has patiently explained this stuff to me before but I still didn't quite get it.  

Having said that, the high dose of thyroid hormone causes my body a bit of confusion.  It actually makes my body HYPERthyroid, which means faster metabolism, spurts of energy/hyperactivity, mood swings, insomnia, fatigue, muscle weakness, and guess what - diarrhea.  So because I have no thyroid I am not automatically HYPOthyroid?  

No... not exactly.  My body is roller-coastering between hyperthyroid and hypothyroid because the excess hormone replacement is being used by my body in a thing called "Reverse T3."  

The ND explained it well but my chemo brain is currently restricting my explanation of the details.  She told me to look it up and I did, here are a couple of links that explain things in line with what ND said: http://www.stopthethyroidmadness.com/reverse-t3/  and http://www.holistic-hypothyroidism-solutions.com/reverse-t3.html

The trick is, there is nothing we can do to treat my symptoms of hyper/hypo/reverseT3 stuff.  It is more important for me to live with these symptoms than to have the thyroid cancer come back.  

That's putting it simply but it is the end of that conversation.  I think family doctor will be happy to hear that because she (and endocrinologist!) doesn't want anyone messing with my thyroid levels/meds.  Bottom line Natalie: You are a SPECIAL SNOWFLAKE.  Suck it up Snowflake.  :-)

About the post-immunotherapy colitis symptoms however, I have news.  We are going to try a three week course of high dose of probiotics.  The good ones, the friendly bacteria.  

This is not the eat-two-yogurts-a-day challenge, this is take-a-minimum-of-50-billion-live-critters-every-night at bedtime, no matter what.  Swallow 4 capsules of nature's bounty.  Sounds good to me, I already had an inkling that these may help, in fact, this is the bottle I always keep on hand and have taken sporadically but had on my list of question for ND as to how to take them properly?  I know they are sensitive little bugs and taking them incorrectly can make them redundant:

She said we have a coin-toss chance of success with this, but it is worth a try.  If that doesn't work, we will investigate food intolerances.  Yikes, I hope the probiotics work, as I consume pretty much only the stuff I like! so... if I have food (or wine) intolerances that are causing my flare-ups then I will be a cranky camper.  

Chances are that all of the treatments/meds/antibiotics I have had have caused a Dysbiosis (also called dysbacteriosis) - a term for a microbial imbalance on or inside the body. Dysbiosis is most commonly reported as a condition in the digestive tract.  This would be understandable due to all the stuff on that list I wrote above.  

The other factor is that in my 20's I was diagnosed with Irritable Bowel Syndrome, and from that I have learned a lot about my food choices and intolerances (to gluten, for example, though I eat gluten anyway silly me).  For the most part those settled down over the years, but now with the intense immunotherapy treatment my digestive system has quite likely been provoked into reacting again to food intolerances OR it has developed entirely new intolerances.  

Should the probiotics not work, I will write about that more as we explore the options.  This post is long enough!  

Geesh... if you're still reading, thank you.   

PS - Don't worry... I won't let all of this "Special Snowflake" stuff go to my head!  My family keeps me firmly grounded with commentary such as Cassandra's observation yesterday that "Mom - EVERY snowflake is special, because they are all unique!"  *sigh* Thanks Cass.  ;-)

Embarrassing moments along the cancer journey... *revised - added Crazy Driver Problems*

...a.k.a. BLOOPERS from the cancer ward.  

Before I begin, please know I am not making fun of anyone (other than myself), and I am relaying stories based upon only my own experiences.   

Dealing with cancer in ANY aspect is serious. Deadly serious.  But... sometimes you have to remain grounded or simply get through a day hour minute moment by maintaining even the most fragile sliver of a sense of humour.  Please feel free to laugh at me:  I do! 

The CT scan waiting room and beyond ~ my first CT scan ever was in Collingwood in April 2014, and I have had eight CT scans and one MRI at Sunnybrook, Toronto, to date since then.  Over the course of that time I have learned several handy tricks from the sweet Sunnybrook CT nurses, such as what to wear in order to avoid having to change into the dreaded hospital g o w n.  GOWN my ass.  Oh wait - yes that's what shows in that gown!!  

On the first one at Sunnybrook however, in July 2014, I was freshly recovered from eight weeks strict bed rest to recover from my invasive groin/hip/leg surgery and I was determined to drive myself to and from the hospital, with an overnight visit to my dear friend in TO. I dutifully spent my hour and a half drinking the chemical water, had the mildly unnerving CT scans, quickly got changed back into my clothes from the scant gown, and followed careful directions to my friends' beautiful home to soak in a luxurious dinner and long-awaited visit with she and her spouse.  We had some wine and yummies, and I was wearing out, so before getting ready for bed I called my family at home to say good night.  

I stood casually at my friend's patio door overlooking deck/patio and a distant CN Tower in the view, chatting casually with my kiddos.  Trying to maintain my composure after a tiring day and sweet conversation with my family who missed me, I was fidgeting with my hand not on the phone, trying to find a comfortable way to stand even when so exhausted.  I was happy to be talking to them and very happy to be at my friends' house, but I was anxious, as any CT scan day tends to do to a cancer patient, and knew I would likely not sleep well despite my gracious hosts' efforts.  

I kept fiddling with my left hand, trying to put it casually in the pocket of my yoga pants (which I have since learned that I CAN wear in a CT scan because they have no metal zipper).  Try and try again I couldn't find the damn pocket of my pants?? What the..??!  Oh dear.... my pants were on inside out!! I looked down, and the seams were all exposed... pockets on the outside and my lovely hosts had not mentioned it (thankful!).  I had walked out of SUNNYBROOK, driven to the other side of Toronto, walked from parking place to my friends' house, eaten and imbibed, and until that moment in my exhausted state talking on my cell phone LMAO - I had no idea my pants were on inside out all that time!!   After I laughed about it I did all I could do:  not take myself too seriously.  

I was still freshly self-conscious of my new scars from two surgeries and dozens of stitches, and the memory of the drainage bottles I had had to wear for over a month after my melanoma surgery have scarred me for life.  
Looking back on it I (almost) wish I had taken some photos of the "bottle babies" as we called them, to commemorate the hideous and disgusting and painful things that humans can actually recover from.  Poor Paige especially, but all of the kids were a bit scared of or grossed out by the drainage lines running to the little pumps I had to empty and record the contents of twice daily.  
I was incredibly embarrassed by these things, they hung from my incisions and were impossible to keep untangled from whatever strange clothing I could manage to put on in my incapacitated state. 

I wish I was brave like this -->

(my drains looked like these except they were attached lower on my "gown" - uncomfortable and gross... had one in my neck from thyroid surgery 7 mos. later too)

     

I abhorred surprise - though well-meaning and appreciated - company stopping by, and I shrank behind the wall or under a massive quilt if anyone did pop by.  One time though I was caught unawares when a friend stopped in, and I was in the washroom.  
Without getting too graphic I'll just tell you a bathroom trip at that time was a big deal - I was only allowed to leave the couch or bed for a pit stop, and that included drainage bottle emptying and any other ablutions I was able to fit in before hobbling back to and collapsing in a heap on the couch. It was an awful time. Awful.  

Well this day that a friend came by I was standing in my nightgown barely draped around my drainage cords and not a quilt or an invisibility cloak in sight!  I was mortified.  I could not get back to my bed without passing through the kitchen which contained Scott and our visiting friend!  I was tiring quickly and needed to get outta there, but couldn't.  

I was also a bit under the influence of reasonably hallucinogenic painkillers I might add, so please bear with me.  

I was hideous, in pain, likely stinky, and in no mood to show anyone my disgusting scars and bottle babies.  AGH!  I started to cry.  I stood in the bathroom bawling my head off, feeling abandoned and alone, wishing I could sink into the floor of my newly renovated bathroom...add red puffy eyes to the previous description and I was even more mortified.  Of course Scott and friend assured me they didn't care and I could come out and walk by (which I eventually did), but it was the LAST thing I wanted to do.  I forced them to turn away and I sniffled and shuffled my way back to bed and avoided eye contact with them for the rest of the day.  
Wasn't perhaps too funny at the time, but looking back on it I realize my over-reaction must have appeared quite comical.  Ugh. 

Randomly crying is one of my on-going bloopers.  I have always been a cry-er.  Its terrible, especially in a professional setting!  Stupid tears spring out whenever I am frustrated, angry or tongue-tied.  Add cancer to that and poof!  Constant dehydration by crocodile tears.  Everywhere. All the time. Random and embarrassing.

Also embarrassing was a night I took the girls to the movies.  Poor kids are stuck with me everywhere they go... I thought it was a big accomplishment, taking them out for an evening after all those weeks I was unable to drive, walk, be in public, shop, be friendly, stay awake.  And here we were, walking smoothly into the cinema.  

I was focusing intently on getting to the ticket counter, dazzled by the noise and light, disoriented and trying to hide it. I thought I was so cool walking them in and SLIP! I skidded and stumbled with a NON-ballerina-style spin and almost falling flat on my face wiping out on the wet floor sign with my uneven footing and overwhelmed disposition.  
I quickly recovered, slunk to the ticket counter, hugged the girls quick and sank into the dark theatre with a bag of popcorn to soothe my shattered nerves.  No wonder the girls and I usually go to separate movies anymore!  They love and support me but they prefer I keep my random crying and clumsy tripping to the privacy of our own home.  *sigh*

Other highlights from my personal blooper reel include quietly observing the funny things other people sometimes say.  I have had grey/silver hair for several years, it is natural, early grey runs in my family on my Mom's side.  
One time a student doctor assisting my oncologist was giving me the habitual quiz but she must not have read my file very well as she seemed mixed up about my treatment meds and exclaimed "Oh wow did the PD-1 Blockers turn your hair white!?"  Um no. I did not have PD-1 Blockers.  And thank you for pointing it out so loudly yes I am prematurely grey.  *doublesigh*  
I am used to getting questions and comments about my hair, and thank you, usually I don't mind but this one went in the record books as embarrassing. 

Traffic Violations ~ I add this to my list of embarrassments with tongue in cheek, hoping no authorities take it the wrong way and confiscate my drivers license.  Yikes.  Some days I wonder if I should be allowed behind the wheel of a motor vehicle?? Silly little mistakes haunt me, I am easily flustered, and I have exited situations in one piece wondering just how many guardian angels I actually have protecting me from myself!?   
Just this morning in fact, I promptly got my car stuck in the snowdrift in my driveway (don't ask - I have a personal high score for escaping my driveway with minimal shoveling, making the kids squeal with delight when I Daisy Duke through the drifts, blowing snow all over the hood and windshield).  
I was truly puzzled, as I didn't think it was quite enough snow for getting stuck?  I dug out the tires a bit, told the dog to stand back, and tried rocking the car back and forth, to no avail.  Stupid thing! I tried digging out some more, tried revving some more, Claire offered to push, I had the car door open the whole time, the beeping was getting annoying.. O. M. G.  The emergency brake was on.  Seriously. The car was not stuck at all.  
It had stalled when I had tried to move it forward into the snow drift.  I restarted it and couldn't move forward or back.  The BRAKE WAS ON THE WHOLE TIME.  AAARRRGHHHH!!!!!  I calmly stopped the incessant beeping by releasing the brake, turns out it wasn't beeping due to the open door. It was the BRAKE.  

That my friends, is CHEMO BRAIN.  It is one of the reasons I have not yet returned to work.  Little mistakes, crappy memory, easily flustered - no major harm done but it all adds up. :-(  I couldn't Front End Manage my way out of a wet paper bag at this point.  

Last but not least: photo shoots.  Oh dear.  I despise having my picture taken, as I have previously alluded to.  But it is a necessary evil should I wish to pursue my writing/blogging hobby and melanoma awareness campaign interest.  Cameras are everywhere these days - did you see my "billboard" from SYSF?  I am still giggling over that one.. LOL  The photo on that was taken by Claire, on the day we were trying to shoot my little video for the I'm Living Proof map.  

Only Claire and Cass and I know what went into taking that photo and video, and it remains a source of blackmail material for the kids should they ever need help in coercing me into anything.  Yikes!  
I have fishy-faces on file and giggle fits caught on camera.  Not to mention the footage you will see of an upcoming project launch for which I was filmed in December.  Cameras and I have a love-hate relationship, I shall have to remain quietly embarrassed by my photos and leave it at that.

Chemo Brain

I have recently and reluctantly discovered that I am experiencing a reasonably common but little talked about medical condition nick-named "Chemo Brain."  

Though I have always been fantastic at multi-tasking and typically have abundant energy for professional and social details, I have also been able to laugh at myself for being occasionally dippy, and I am known for forgetful little things such as over-introducing people LOL -oops so you have already met this person I am introducing you to again? Several times? at my house?  I chalk that up to social graces and making sure nobody is left feeling uncomfortable not knowing each other.  ;-) 

But in the past few months I have noticed some uncomfortable changes in myself and my patterns of thinking. A few of my close friends, and my family doctor, spoke to me about my shifts in thinking being more negative than usual, and my depressy and lackluster approach to things seemed to be overpowering my usual cheerful-laugh-in-the-face-of-danger personality traits. Turns out there is medication for that, which I have never taken before in my life, but apparently is commonly prescribed to patients receiving the type of immunotherapy treatments I am. Since taking the meds I am feeling a bit better in the depression side of things, but I am still very aware of the Chemo Brain.

Though I am not taking a traditional chemotherapy (because melanoma does not respond to chemotherapy, it was not offered as an option in my treatment plan), I am indeed taking a chemical treatment that affects the human body head to toe.  

Though I don't have the intense nasty physical side effects of what we commonly know about chemotherapy, I do have the same potential for long-term organ and tissue damage, like chemo.  It is a risk, but apparently one worth taking. We shall see. 

One of those long-term side-effects which I am already finding to be affecting my life is Chemo Brain.  For the mothers in my reading crowd, you may be able to relate if you ever had "Baby Brain" during and after pregnancy?  It's kind of like that (speaking from experience!).

I took myself to see a fantastic movie in theatres a few weeks ago, and it had an unexpected cancer twist.  Without giving away any plot I can tell you that there was one scene where the main character had to openly discuss a health issue he had been hiding from his family and the public.  This character was a highly esteemed officer of the law and he did not want to admit his challenges with mental setbacks for fear of losing credibility.  

In one scene where he was being interrogated about something very important that he could not recall whatsoever, and his cancer treatment side-effects were being blown open to the public, he easily admitted to the nausea, vomiting, exhaustion, headaches, physical weakness, etc. But when asked about his memory loss and decrease in mental sharpness he defensively exclaimed "But that doesn't apply to me!"  This scene stuck in my mind, and I could relate to his reluctance to admit a decrease in mental function.  I can tell you about my physical limitations but I don't want to admit to my feeling like I'm losing my mind! I am too strong for that!  I can handle this! 

Why do we do that?  Are we weak if we admit defeat?  Are we weak if we admit that we are struggling with something, that we are afraid of the future, if we are afraid that we may never feel back to "normal" again?  Are we perceived at losing an edge or not being "positive enough" if we admit that we are not running on full mental capacity?  I'm sure there are plenty of mental health studies on that and I don't want to elaborate on mental health at this point, except for how my experience with cancer treatment is affecting mine.  It is a real factor, and I have no choice but to be open about it.  

My kids notice it the most LOL and they just tease me and take it in stride when I can't finish a sentence without searching my brain files to spit out what I started to say... or when I intend to say one thing and an entirely different thing pops out of my mouth.  I think their favourite (beyond my mixing up their names - to their faces - a 12-year long saga of twin parenting I'm sure) is my asking them to please tidy up their broccoli! and make sure their dirty laundry goes from the hamper to the fridge!? Geez Mom you're losing it!! 

I am easily exhausted, physically but mentally as well, I find I am overly sensitive to noise, I don't like surprises as much as I did before, I like my peace and quiet alone time even more than before (my best friends all know and lovingly understand and respect what I mean when I say I'm hibernating, but they do haul me out of bed if they feel I have been hibernating too long).  I have to write everything down, and I practically carry my calendar around with me to make every note in one place, pink sticky notes and paperclips have made my "calendar" quite thick. 
Driving my beloved car is a more stressful experience than it has ever been, I have questioned my own judgement a couple of times, which scares me.  My eyes get all burny feeling when I talk too much, and I have to lie down flat when the dizzies take over, which makes me angry and frustrated therefore tired and uncommunicative. I find I don't even want to drink anymore (after all this complaining about having to keep my liver clean) I feel uncomfortable with the loss of control even a little fireball or wine causes. Eeek I never thought I would say that!?! 

I worry about this side-effect specifically as it relates to my job.  I know it has been a while since I have been there.. but believe me I am actually gainfully employed. LOL I am pretty open with my boss about how I am feeling and he seems confident that I will recover and get back my "edge" needed for my busy multi-tasking management position, though I lack that conviction right now and I fear that I will not be able to do my job with the same physical AND mental prowess I had before.  Time will tell... until then I am comfortable knowing that I just have to look after my family and their broccoli troubles. And my friends can tease me about re-telling my stories, and enjoy the fact that they can re-tell me theirs because I am largely unaware of what I have already been told. :-) 

I'm thinking this is a main reason for this blog... y'all can read about how I'm feeling, and if I repeat myself it's just because you're re-reading. ;-)  I can look back on my written word to see if I'm repeating myself. Point for self-preservation - phew! 

I found a great article about Chemo Brain and I will share some points from it, in addition to the link to it:

What is chemo brain?

Here are just a few examples of what patients call chemo brain:

• Forgetting things that they usually have no trouble recalling (memory lapses)

• Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)

• Trouble remembering details like names, dates, and sometimes larger events

• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)

• Taking longer to finish things (disorganized, slower thinking and processing)

• Trouble remembering common words (unable to find the right words to finish a sentence)

"Doctors and researchers call chemo brain many things, such as chemotherapy-induced cognitive dysfunction/impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment. Most define it as a decrease in mental “sharpness” – being unable to remember certain things and having trouble finishing tasks or learning new skills. Some doctors call it chemo brain only if it doesn’t go away or get better over time. How long it lasts is a major factor in how much it affects a person’s life. When it starts, how long it lasts, and how much trouble it causes can vary a lot. So the term “chemo brain” is not completely accurate. Still, it’s what most people call it right now.

For most people, brain effects happen quickly and only last a short time. Others have long-term mental changes. Usually the changes that patients notice are very subtle, and others around them might not even notice any changes at all. Still, the people who are having problems are well aware of the differences in their thinking. Many people don’t tell their cancer care team about this problem until it affects their everyday life."

What causes brain problems during cancer treatment?

"Studies suggest that there may be more than one cause of chemo brain, especially for the short-term symptoms. Some people with cancer have very real brain problems even though they have not had chemo. Still others notice problems when getting hormone treatments, such as estrogen blockers or androgen deprivation therapy (treatments to lower testosterone levels). For some, problems start after surgery. Along with chemo, many different things can worsen brain function.

For instance, brain function problems could be caused or worsened by any one or any combination of these factors:

•    The cancer itself

•    Other drugs used as part of treatment, such as steroids, anti-nausea, drugs used during surgery (anesthesia), or pain medicines

•    Low blood counts

•    Sleep problems

•    Infection

•    Tiredness (fatigue)

•    Hormone changes or hormone treatments

•    Other illnesses, such as diabetes or high blood pressure

•    Nutritional deficiencies

•    Patient age

•    Depression

•    Stress, anxiety, worry, or other emotional pressure

Most of these cause short-term problems, and get better as the underlying problem is treated or goes away. A few, such as depression, can cause long-lasting brain problems unless the cause is treated.

So far, there is no known way to prevent chemo brain. For some people, treating their cancer will mean trouble with thinking, memory, planning, and finding the right words."

 Source and more interesting info: http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/chemo-brain