You don't know if you don't ask

I found a fantastic new (to me) resource this morning.  I am always buoyed by the virtual "meeting" of fellow melanoma and/or thyroid cancer patients/warriors/survivors, and wow did I hit the jackpot today! 

I found this informative and current site: Canadian Cancer Survivor Network  

About CCSN

The Canadian Cancer Survivor Network was created by a group of Canadians concerned about cancer.

CCSN's mission

• Empower collaborative action by cancer patients, families and communities to identify and work to remove barriers to optimal patient care.
• Ensure that cancer survivors have access to education and action opportunities to have their voices heard in planning and implementing an optimal health care system.
• Educate the public and policy makers about the financial, emotional and health costs of cancer and offer considered, positive ideas and recommendations to alleviate their effects.
• Research and encourage research on ways to alleviate barriers to optimal patient care and follow-up.

Additionally, they boast a comprehensive list of cancers, and with each they list blogs and websites belonging to regular peeps from all over the place.  
So.... I sent them a little email asking if they may be interested in sharing my blog there as well... and they immediately responded with a yes!  Humbling...  I am honoured.  

Thank you CCSN, here are the links:

CCSN - Skin Cancer - Melanoma http://survivornet.ca/en/groups/blogs/skin_cancer__melanoma_2

(please scroll down a bit if you want to see mine... they are listed alphabetically)
AND
CCSA - Thyroid Cancer  http://survivornet.ca/en/groups/blogs/thyroid_cancer_2

The Impatient Patient... blogging my way to serenity.  Thanks for joining me! 

My feelings about the Sun

In the last few weeks my relationship with the Sun has come into question more publicly than usual.  Preparing for my photo and bio to be posted on the I'mLivingProof.ca website, I searched through photos of myself and I came up with a few options that may have been outdated but were of me nonetheless.  I consider myself to be very UN-photogenic, plus I tend to be the body behind the lens in my family, so photos of me are few and far between.  I sent a couple:

The site coordinator at SYSF politely asked me if I had any other photos of myself, in NOT the Sun.  Hhhmmmm.... nope, not really!  

Until that day I had not admitted to anyone else that I could see why it may be inappropriate for a melanoma patient to be on a melanoma awareness project portrayed in sunglasses and a halter top.  

I had used these tanned happy photos several times over the years in my writing, facebook, friends' photos/albums, etc. and I was still using them, thumbing my nose at the idea of the Sun being solely responsible for my skin cancer.  

I toss it around in my mind every sunny day, especially in summer when I am sitting inside looking out - yes my lifetime of sun exposure may have contributed to the onset of disease, but yes it may have been a case of bad genetic "luck," as is also known to happen.  

Even during the video-shoot interview I attended in December I was stumped when asked how I now feel about the Sun?  What is my relationship with the Sun?   I was silent.  I couldn't put it into simple words that would make sense on camera.  I stuttered and fell silent again, and I desperately hope they cut out that part of the interview.
  

Almost two years since melanoma entered my life and I do not have a good answer to this question, or at least not one that I would comfortably share with young people looking for definitive advice on whether or not to spend time in the sun and be careless about sun protection.  Yes I am FOR sun protection, and yes I will be careful in future, but no I will not live the rest of my life in fear of sunlight.  

Not until working on my book have I been able to put into words how I feel about the Sun. I have been mulling it over as in posts last February and March, and I still stand behind the words I wrote last year...

In the article Skin, written February 2015, I couldn't help but say about my Dermatologist: 

"She intimidates me like no other, she is my least favourite of all of my medical appointments (no offense to her, it's just the nature of the beast:  she is the one to lay blame on my sun-loving habits and express little sympathy over my willingness to repent in darkness for the rest of my life in exchange for never having to visit a Dermatologists' office again)."    

And an excerpt I wrote in: The Sun, April 2015

"I have yet to put in writing my thoughts about the sun.  I am a melanoma patient, however that may pan out in the future, at this point in time it is what it is.  I have always loved the sun, it makes me feel good, I haven't spent any time in it for the last year, I miss it tremendously, and every single day in the back of my mind I mull over how to handle myself sun-wise this coming summer.  

The doctors said that I need to stay out of it, wear a hat, stay in the shade, wear sunscreen and UV-protective clothing, stay away from windows and even be careful in the warmth from inside the car windows - avoid it at all costs.  In the next breath, I was told that I have as much chance of developing a NEW melanoma as anyone else does, or at least as much chance as I had before developing the first melanoma. 

Either way, fact is, my being in the sun will not affect my current melanoma, it doesn't make it grow, or spread, it is not a tumour that feeds on UV rays... what I have now is a disease inside my lymph system. That's what I have.  

SO, what I take from this is that I still have to be safe in the sun, as everyone should be, but... I may occasionally improve my quality of life by not banning myself from the thing that makes me most content and warm.  I am a sun baby, through and through."

Clearly I am still struggling with this, repeating and re-wording my thoughts every time I think about it, as I suspect I will do for the rest of my life. 

An excerpt from my future book, if you please:

I was never in it for the vanity.  Yes I enjoyed my complexion most when it was a luminous tan, the golden highlight of my collarbones and naturally glowing cheeks.  But the largest draw for me was the life I felt when my eyelids were closed against that light.  I consistently thanked the rays warming my skin and relieving me of my despondency.  I was never compelled to analyze the reason or the cause...

Perhaps my childhood always near some body of water, or my lifelong trips to Florida and even farther south spending vacations basking.  Or maybe an innate paganism that made my existence entirely reliant on worship of the Sun?  

I cannot give just one answer or explanation, but I can say that even in the height of my fight against a potentially deadly diagnosis of metastatic melanoma I still longed for my time in the Sun.  I felt I had been robbed of the life for which I had been made.  

The loss I felt upon being told by my oncologists that I could - should - never again be exposed to sunlight made me wilt on the spot.  That grief rivaled even the fear and desperation I felt at the thought of losing my very life.  To never bask in the Sun again? For what other purpose was I expected to live?  And for what reason was I doomed this punishment?  

I argued and kicked and fought, I bought the SPF and the clothing.  I stared longingly through the window on countless summer days, but until today I could not define my relationship with the Sun.  Modern-day pale youths would interview me, in awe that I could still say I love the Sun.  And every time I have been asked if I could change anything would I have kept away from the Sun? Would I trade my deadly diagnosis for a lifetime of peace in cold, pale skin?

No.

I could not answer.  

I could never explain what life-giving power the Sun has over me.  I was not laughing in the face of my diagnosis.  Admittedly, I have always had a problem with authority, but this is larger than that.  It is my nature, my need.  "Give me sunshine or give me death!"  I could not live in purgatory. 

Article © Natalie Richardson 2016

Sushi at Home, seven years later

I'm doing it again, re-posting from my old blog. I couldn't find that V-Day rant, so here is one better: my all-time favourite: How To Make Sushi.  

I have made no secret about how cranky I have been feeling (again) (still) and some have even gone as far as to suggest that I should just keep to myself until I feel more human.  And I quote: "Start being nice! Old mean cat with her claws out. Just eat your prednisone and be mean to Scott and call me when it's over!"  Yep, my friends are sick of me.  I knew this was going to happen.  That's okay, I'm busy writing my book anyway!! GRRR  (damn that better be worth it!)  Scott has escaped for his week away for work so I will just soothe my shattered nerves with some good old blogging. So there! 

(Photo cred: Cass)

There has been a lot of talk about sushi in our house lately, the kitchen renovation makes food preparation (and cleanup!) enjoyable, plus the girls and I are seriously working on learning to cook things we love (and augmenting their mother-daughter-memory cookbooks we are working on), AND last but not least, we happen to enjoy a little Valentine's Day treat tradition of a real sushi/sashimi dinner out at a deliciously authentic Japanese restaurant in Owen Sound.  I am always impressed by their food.  The girls and I are going on Sunday.

I put a lot of work into this blog post in 2009, so seven years later I feel it is still worth sharing.  A few of the little details have changed but over all it is just as yummy making this stuff in my small town now as it was then.  Here goes:

~~~~~~~~~~~~~~~~~~~~~~~~~

Living in the city we ordered sushi frequently. Here in the boonies, we had to learn how to make our own. So we did.  It's not as hard as you may think, going into it.  I do not use raw fish, as I don't know where to source it sushi-grade, I will leave that to the restaurants.  

We use the odd crab meat for california rolls, but otherwise it is all veggie.  Nothing to be afraid of!  (technically the term sushi IS the type of rolls we make at home, what people commonly think of when they hear the word.. Sashimi is the raw fish preparation with similar other ingredients. I include this caveat for those who are squeamish about the word SUSHI)

After several attempts, looking up technique online, and experimenting with our own flavour combinations, we were ready to start making it for friends. It's time consuming, and a bit finicky, but so incredibly worth it.
Thought I'd try my hand at taking pics as we go and creating a foodie magical blog post like the experts.

There are basically 4 main components:

• preparing and cooking the rice
• cutting up the fillings
• toasting the Nori
• making the maki
  

A few tools handy to have for making this dish:

•  large wooden or glass bowl for preparing the cooked rice (must be non-metallic)
•  wooden spoon
•  some sort of fan (we use a plastic plate)
•  bamboo mat for rolling

 

List of ingredients:

Rice:
3 c. rice - we use short grain Japanese rice, usually labelled sushi rice or sticky rice. Even the PC sushi rice at valu-mart works well.
3 1/3 c. cold water

To prepare the rice, rinse it under cold water until water clears.

 

Add the 3 1/3 c. water to the pot of rice, let soak for at least 30 minutes, in the stainless pot, covered.

Rice vinegar mixture in a separate small pot:

1/2 c. rice vinegar
1/4 c. sugar (organic fair trade cane sugar works well)
sea salt

Prepare rice vinegar mixture in a separate pot on back burner, mix vinegar, sugar and salt and simmer a few minutes just until sugar is dissolved. Let sit, heat off.

Vegetables:
You can use what you prefer... whatever you use needs to be cut into thin strips, longer is better but short pieces will work too. Our favourites are:

• portobello & red pepper            
• avocado & cucumber
• cucumber, red pepper & carrot
• carrot, cucumber & red pepper
• crab, avocado, cucumber, carrot

Note - we fast-fry/grill our portobello mushrooms in a tiny bit of Bragg sauce and maple syrup, or black bean sauce, or any sweet/salty combo we may have on hand. Slice into strips, set aside to cool.

Nori: 

 Nori is the Japanese name for edible dried seaweed. Comes in packages of 10 sheets, can be used for other dishes as well, such as julienne in salads - although it keeps well in the pantry sealed in a bag. It is thin and crispy, with one shiny side and some faint lines stamped into it. We get ours in Owen Sound or Collingwood, it is not too hard to find even around here and is inexpensive.

 

Preparing the nori is simple but crucial. For yummy sushi that is easy to chew: prior to rolling the maki, toast the nori one sheet at a time on a dry pan over medium-high heat.

It comes out of the package a greenish-black colour, toast until it is a lighter green. If the heat or your pan is uneven you will get spots in your nori that get very bright green and thin, this is okay but will serve as a challenge when rolling as it will tear when the moist rice hits it.

Try to toast evenly - I stand over it with my tongs constantly flipping it back and forth, takes only 30-90 seconds per side. I have accidentally ruined a few pieces learning to toast them, but I have gotten the hang of it now. Toast all of the sheets you will be using for this batch of sushi - we use 5 sheets per 3 c. rice recipe - and set aside on a dry plate. They cool quickly so don't worry about that, they should be room temp. to use.

So.... When your rice has soaked, your rice vinegar is cooling, your veggies are prepared, and your nori is toasted, it is time to cook the rice.

As your rice has been soaking, just turn on the heat, bring to a boil, then reduce to simmer for approx. 15 minutes, or until water is absorbed (and when you tip the pot sideways no water pours out). Turn off heat, allow to sit 5 min.

This is another key step - the rice has to be cooled rapidly to handling temperature, approx. room temp or slightly above. Too warm will make your veggies/nori mushy, too cool will be hard to handle - this rice must be used immediately. One time we made it ahead and then took it to our friends' but it was already fanned to temp. and sealed quickly so it held it's temperature/consistency.

With wooden spoon or bamboo spatula, scrape rice into large wide wooden or glass bowl. Pour vinegar mixture onto hot rice. Gently stir/fold rice over and over to blend vinegar mixture - it will absorb quickly and become very shiny and sticky. This is where the munching begins for me - this rice is so good, tastes like in a restaurant.

Fan the rice constantly while stirring, this does whatever magical thing it does to make the rice perfect.
 
At this point, you have gathered everything you need, and you can begin rolling!

Have a bowl of cool water handy for keeping your fingers wet - the rice is SUPER sticky.

Begin with bamboo mat flat, with plastic wrap on top. Place one piece of nori (shiny side down) on the plastic wrap. Begin pressing the rice gently onto the nori, putting an even layer all over the nori, leaving approx. 2 cm at each end. Arrange vegetable combination along the middle as desired, being sure to place veggies right to the edges, sometimes hanging over:

To learn to roll it is truly trial and error - practice practice practice.  It took me a while to master rolling, and I still flubber it up a bit sometimes but the kids love to eat those as well as the perfect ones, no worries! You have to pull the plastic wrap a bit taught under the nori/over the bamboo mat, and neatly tuck the short end over the veggies and press it with the mat, keeping all of the goodies inside:

Then pull back, gently tuck it over again, and squish it evenly with the support of the mat again. The 2 cm. exposed edge of nori will stick to itself, sealing the length of the roll.

 And repeat...

  

Cut into bite-size pieces with a sharp WET knife. Arrange as desired. Repeat.

We usually cut the ends off and use only the neat rounds on the platter, but this is primarily because I like to munch the ends as they arrive - serving as an excellent appetizer! Quality control! I would have taken pictures of the ends but they um, didn't last long enough.

The finished product! We like to garnish with dry-toasted sesame seeds, Bragg sauce or gluten-free Tamari, pickled ginger and wasabi. Normally we use the tin of dry wasabi that you rehydrate with boiled water, but we do keep a prepared tube in the fridge for "emergency."
  

  (Photo cred: Z) :-) ~ like my new sushi plates?

This is a fun meal to prepare as a family, and to enjoy together. I realise it is not a very locavore-friendly meal, but it is a great way to experience another culture.  Sushi is a healthy and beautiful example of how others around the world take pleasure in their food, respecting their bodies and the ingredients they are fortunate to have.  

On sushi day I always end the day grateful to be alive. 

Best beverage to accompany is Asahi or other Japanese beer, or simply green leaf tea. I don't mind a little bubbly with it, personally.  Such a special time and feast with family deserves celebration. 

Enjoy! 

Article & Photos © Natalie Richardson 2009-2016

(with hand-modeling cred to S)  :-)

"Nail polish gives you cancer"

I have not tackled chemical/environmental discussions to date on this blog, I guess I'm still fairly bitter over having been diagnosed with cancer even after a relatively clean life looking after my temple.  I have long been teased by my friends for being a "tree hugger," in my vegetarian days my Sista even called my food "bird seed." I am still quite green-leaning though I have returned to using the likes of aluminum-laden anti-perspirant, Tide pods, and Keurig cups.  Oh and nail polish.  

I have never been a crazy nail diva, just every now and then I enjoy sassing up my manicure for fun.  I even began painting my daughters' nails with chemicals when they wanted to copy Mommy and have shiny nails.  For a few years we used only natural/non-toxic polishes such as Piggy Paint.  But mainly we used whatever brands provided the colours we wanted.

My main polish fetish is for my toes; I like pretty tootsies.  My manicure usually suffers the realities of hard-workin' woman syndrome anyway: dishpan hands, mom-please-open-this, bank teller cash counting (and constant hand-washing), cash office manager paper shuffling and other grocery store perils.  But there are a couple of times per year that I crave a nail design to suit the holiday.  Deep red at Christmas for example, tiny witch and ghost stickers at Halloween, and my favourite for nail decorating: Valentine's Day.  

Ah yes, Valentine's Day.  Honestly I am a romantic at heart, but for me Valentine's Day appeals only to the black of my soul.  Too many fairy-tale let-downs perhaps. Therefore I enjoy a glossy black manicure at Valentine's Day, it's a tradition I can't seem to shake.  

It used to make the gentlemen customers at the bank chuckle... I think they shuddered inside? But they always asked me about it, and comments on the timing of a BLACK manicure on the PINKY RED "holiday" were fodder for many cynical romance jokes at my wicket.  

I think it is what got me through the holiday where everyone else was vomiting hearts all over.  (That is one problem with working a retail or public-facing job, you have to cater to the masses. Sell sell sell!  Well baby I could sell a black heart to a cupid on V-Day.)

As this Valentine's Day approaches, I have felt the pull toward the manicure kit.  I had visited the spa last Saturday for a toe treatment, now my fingernails needed a touching up.  I asked Claire if I could borrow her black and she said "MOM - nail polish gives you cancer!"  UGH  Yes dear, now hand it over, Momma needs a  shine!!  

This is what has made me chuckle all day, my kid straightened me out as to the poor life choice I was making by wanting to paint my nails.  Good for her, I'm glad she is listening (as she absent-mindedly scrapes the rest of the chipped grey polish off her nails while reading her David Suzuki book).

I have decided to leave the issue rest with my teenagers - I learned early with twins to choose my battles.  I harass them enough on the big stuff (which seems to be working all right), so some of the little stuff I leave alone. 

I can hardly argue with them about nail polish when they see me drinking coffee (or other chemicals haha), or cleaning with Windex, or driving a car, or having wi-fi currents pulsing through our house, or burning candles simply for fragrance, or any selection of the life-threatening non-green stuff I do daily... such as breathing, crossing the street...receiving pharmaceutical treatments with residual effects the likes of the Chernobyl disaster.    

A little nail polish here and there isn't going to kill us.  I'm pretty sure it's cancer that's gonna get me, and I already have that so HA.  Malignancies do not grow on nail polish fumes, just like melanoma in the lymph system does not grow from new sun exposure.  Just saying! 

In any case, I will remain on the fence where I typically reside anymore.  I will paint my nails pretty today, but I will be mindful of the compromise I maintain will be our saving grace:  I will use "3-free" polish.  It is available in my favourite brand anyway, O.P.I. always has the funkiest colours, and last year I purchased the perfect shade to compliment the ladybug tattoo on my foot.  

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have been searching through my old blog documents for a post I wrote a few years ago about Valentine's Day.  If I recall it was a rant... pretty environmentalist-leaning and anti-Valentine's Day candy distribution in schools.  Ahh.. the good old days, simple.  My kids were younger, and my ideals were less complicated. Live and learn.   I can't find the old rant so I guess it was meant to be shared only once.  In it's place I will leave you with a couple of funnies from my old blog photo archives:

                               ;-)

Happy Valentine's Day!  Or should I say, 

Happy Black Nail Polish Day  :-)

(Of course I reserve the right to post a photo on Sunday of the adorable heart-shaped box of chocolates my dear friend gave me - it has a pair of CHOCOLATE LAB PUPPIES on the front of it!  That stuff still gets me... I am definitely going to run with the chocolate lab jokes this Valentines Day.  I didn't say I was against chocolate!)

World Cancer Day 2016

World Cancer Day is the one singular initiative under which the entire world can unite together in the fight against the global cancer epidemic. It takes place every year on 4 February.

www.worldcancerday.org

Why is World Cancer Day important?

Currently, 8.2 million people die from cancer worldwide every year, out of which, 4 million people die prematurely (aged 30 to 69 years).

World Cancer Day is the ideal opportunity to spread the word and raise the profile of cancer in people’s minds and in the world’s media.

 

Just for interests' sake..... 

here is an updated list of cancer awareness ribbon colours: 

I guess I can boast black and teal/pink/blue.   Strange thought.

   

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