Thursday, December 24, 2015

Happy Christmas 2015

The happiest I have felt in a long time, especially at Christmas, is today.  I have been doing a year-in-review mentally, as I have had the pleasure of spending time with family and friends, surrounded by love and laughter all day long.  

Now I am too excited to sleep, I want to keep basking in the glow of our upside-down Christmas tree, listening to the "Holiday Classics" channel all alone, waiting for Santa with all of the kids in town, fending the dog off the cookies(and carrots) Paige carefully left out for tonight's much-anticipated visitor(s)... NORAD currently reports Santa over Antarctica and I know he is coming here, as we have always been fortunate enough to have had.  
 
 


We are fortunate in countless ways, and I find myself again at a loss to put into words our gratitude for the love and support we receive as a family.   
Thank you to everyone who has helped make our year a successful one.  It may not have been perfect, but it is closing with a double-dose of "remission" which is pretty close to perfection, in my experience.  
I/We cannot thank everyone enough for the thoughtful help and messages and encouragement and surprises and and and and and and and .... your care is felt and appreciated today, and always. 









We are all looking forward to the next week or more of festivities and visiting with our respectful families and friends near and far. I hope you all have such wonderful things to look forward to.  And in addition - a full moon!  


Merry Christmas to All!
  
I am thinking of you 
and wish you well for 2016 and always. 



Thank you xoxooxxo

Friday, December 18, 2015

Toronto today

Many times over the years I have encountered that difficult catch-phrase "go outside your comfort zone!" --as if I don't do that regularly!?  If you think about it, everything is outside our comfort zone.  If it is comfortable, we already do it, and we do not feel the need to draw attention to it.  

For years I have been challenged at Toronto driving.  I have lived in cities yes, and I am reasonably adept at driving vehicles other than my little Civic, but Toronto driving is a different animal.  In the late 90's I drove myself to meet friends at the ACC for an Alanis Morissette concert and then booted my car all the way back to Cambridge without taking a single breath, considering myself lucky to be ALIVE after a trip to the base of the CN TOWER!  
Since then I have basically considered my life complete in my small town of three traffic lights.  No need to go further... I have explored Florence ITALY without panic - for god sakes surely I can close the chapter on "needing to accomplish traffic-related ambition" outside my "comfort zone!"

But nnnoooooo..... today I took a casual meander down to the Queen West neighbourhood in Toronto for a day of artwork, public relations, open-mindedness, and melanoma speak.
  
I left early this morning, drove down to 401 East to Dufferin/Yorkdale and followed Scott's perfect directions to downtown TO, drove straight to the building I was invited to, turned around a time or two to get a parking spot in a Green P lot, walked back through a neighbouring schoolyard as primary students were going to their outdoor recess (remarkably they looked a lot like my own country kids!?), and got a maple latte to accompany me in this supercool space, my hangout for the day:

http://artscapeyoungplace.ca/
(photo cred: click here)

Warmly greeted by the public relations firm hosting the event, I settled in to the old school-building converted to not-for-profit artists' space humming with activity such as a day care centre, a delicious cafe, art installation space, and rental studios such as the one I was in, on the 2nd floor.  

We were here to discuss melanoma, in a way new to me.  

There was a film-camera crew - a make-up artist even! - and a sound guy (who looks remarkably like a young Anthony Bourdain), A Director, and some patients of the little-known disease melanoma.  The patients were the stars of the day, and they were treated as such.  Oh wait.. I keep trying to forget, I am one of those melanoma people... shit.. 

One-on-one interviews were filmed and then a mixer of patients and artwork (it's all top-secret until launch in the new year) - all "Action!" and "Cut!" style until a yummy catered lunch.  Okay well there weren't really "action"s and "cut"s but there was a real little black and white striped clappy thingy snap in front of every take.  It was supercool.  Very interesting.  

Fast-forward to the highlight of my day:  meeting some fantastic people.  Not only were the PR people empathetic, knowledgeable, and truly interested in the project, the accompanying melanoma patients/victims/survivors were supremely awesome.   

I have mentioned before my struggle to meet people in the same boat as I am, melanoma-wise.  Well today I found myself in the company of some lovely folks who speak the same language as I do:  BRAF NRAS ipilimumab MEC excision node biopsy metastatic devastation gene mutation resection margins mass oh my! No need to clarify, we were on level plains.  
Film or no film, I have made some new friends, and even if we are not able to keep in touch I gained a feeling of power today that they may never know they contributed to, but that I will always be grateful for. 

I value their experience and their knowledge beyond words, and I am inspired by the fact that they were all standing with me in the same place, after being through worse battles than mine (really, I was the baby of the group, not in age but in melanoma incident... I have had five surgeries... these folks ran circles around me).  The most important thing:  they are still here.  They were in Toronto today as well, hoping to help others by spreading the word about sun-safety and non-complacency in skin CANCER.  

They were serious about their desire to help others fall short of the fate we have encountered, they are passionate about keeping people out of the sun in order to avoid the risk of developing melanoma. Melanoma. It is not JUST skin cancer.  It IS skin cancer.  

I will be sure to post news of the campaign launch as it comes available.  In the meantime I will email my new acquaintances (we all exchanged business cards) and lend support where I can.  Judging by how well we all hit it off I can envision us having a "cast party!?" when this launches LOL  I would even drive back down Dufferin to do that.  :-) 

Toronto traffic and camera-shyness aside, I feel today was a powerful day.  I received support and hope at the same time, plus I was able to explore the side of myself that I enjoy when I travel to new places.  
In fact in one of the alleys I traversed this morning I recalled Firenze as if it was yesterday. The light and air and temperature seemed the same in the Toronto alley I walked today, as it was in Florence eight years since this photo:

On the way home I casually noticed one pedestrian that I almost ran over didn't even flip me the bird!  Sure sign of my comfort in the Toronto traffic - after all these trips to Sunnybrook and other attractions I must be doing something right! 


Oh PS ~  All day when commenting on our unseasonably mild weather and asked if we have snow in Meaford I replied that "no we don't, as I requested we not get any snow until I was home tonight after this Toronto event." and we laughed... haha...  Seriously, the second I pulled into my driveway it began to snow.  My car is now covered and I am going to go to bed wishing for six feet in the morning.  I am done my work for a couple of weeks and I think we are due a white Christmas!  

PPS ~ Thank you Save Your Skin Foundation for connecting me with this great day 

************
Another edit add-on to this post: I appreciated the warm-up conversation the film crew afforded my nerves.  When I told them I am from Meaford one of them said hey isn't there that cool restaurant up there in the middle of nowhere?  Teds Road something... I said Yes! Ted's Range Road Diner LOL  It's in a quonset hut style building and he serves amazing food.  So we talked about game meat and my history up north of salivating at every "Bear BBQ" in Barkway etc.  Anthony Bourdain Jr. said he did the sound for a film piece a few years ago at Ted's..? COOL!  So I just googled it and found this, perhaps it is the one?  Enjoy  :-) 


 

Thursday, December 17, 2015

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!


Monday, November 23, 2015

The "Quote Board"

One side effect of a kitchen renovation is that all artwork and wall hangings have to be removed for the new paint.  Everything has been gone from our space for a couple of months, and now it is time to unpack and survey possessions to see what goes back in.  

My "Spaghetti Guy" (a.k.a. "The Man of the House") painting was back on the wall in his new spot before the new counter top was even in... but other pieces are still stacked in the basement awaiting judgement.  

One such piece is our "Quote Board."  Our infamous quote board, which is actually an old recycled piece of faded yellow bristol board stuck on the wall with tape. This piece of paper has been an institution in our family for almost five years.  It has been decorated and written on, referred to and often autographed by our female friends and family visitors.  

It may not be pretty, but it is our family creed.  It evolves with us, it grows as we grow, and it lifts us when we fall.  We all contribute to it, and we all take from it what we need: 


One winter morning in the wee hours I was sitting quietly in the kitchen pouting over a broken heart, looking around at my house, at my life, and I thought of one of my favourite quotes from childhood.  Early in my life I began collecting quotes, my first memory of this quirk began with Eleanor Roosevelt saying on a page "We teach people how to treat us."  

I noticed how much I missed the whiteboard/corkboard that had hung beside my EX-armoire in the kitchen, how I had printed a Dr. Seuss quote beside a balsamic vinegar dressing recipe and the newspaper clipping of Bill's valu-mart store hours.  I needed to replace that quote, and I couldn't think of any better time to do it.  

Rummaging around in the basement at 4 a.m. I found an old bristol board from my Meaford Farmers Market Board of Director days, flipped it over on the kitchen counter, sat down with my couple of fancy coloured Sharpies and started writing.  I surprised myself by remembering quite a few of the items on the whiteboard, then I ran down and retrieved the EX-whiteboard from the rubble to copy the quotes I had missed.

In my idiom-inspired Sharpie-fume fervor I barely noticed Cassie sleepily perched across from me until she asked if she could put something on that piece of paper.  "Of course!" I said, and rustled up some crafting supplies for her to create that big pink butterfly stuck on the left in the photo above.  We chatted and crafted until the sun came up, and when Claire woke up she was only briefly puzzled by our very awake state.  She hopped on board and had to create something as well, hence the heart-filled peace sign to the left of their tiny school photos stolen from the proof thingy from the school photographer. 

Those items have remained there all this time, as have the original quotes I neatly printed that morning.  We have added to the "board" numerous times and we still have plenty of room, although the girls all know that additions to the board are a sacred act, approved only by myself.  

Should they wish to have quote boards in their homes when they grow up they can put whatever they want on them.  For this one I will rely on my wisdom and experience to sift through the superficial social media stuff they come across daily, and allow only true, intelligent, and inspirational comments.

The photo is small so I thought I would share some of our favourites.  These quotes may be historical, may be realistic, may be deep in meaning for some and not for others, but they are all essential to who Claire and Cass and I are.  I hope you enjoy some of our favourites:


Fortune favours the brave


Luck = when preparation and opportunity meet


A MISTAKE MADE MORE THAN TWICE, IS A DECISION.


Honesty is the best policy


If you're never scared, or embarrassed, or hurt, it means you never take any chances.


You are what you think you are! 
What do you think you are? ~ Oprah

There are also some clippings that have meaning for us, a romantic card, a medal of friendship from a birthday party, a couple of photos, including one of Captain Jack Sparrow.  If you happen to not be familiar with him here is a closer look:


(YAHOO!!! Now I have Robert Downey Jr. AND Johnny Depp on my blog!!!)


 We must not weep for what might have been... for there is still time. ~ Edward Matchett


And one of my personal favourites and possibly the most true:

Treat every problem like a dog would: 
PISS ON IT AND WALK AWAY



 Yes, the quote board will be taped back on the wall... at 4 a.m. tomorrow.  :-)



Sunday, November 22, 2015

Renovation Reflections

Yesterday my kitchen renovation was officially complete. It began October 5, there were few snags, it's all done now ~ overall project success! 


Thought I would post a few photos and notes for amusement...  #1 tip I would pass along to anyone about to undergo a major reno?  Keep your cold air return and vent registers covered during the work process!! 
Random items such as dog toys (namely bouncy roll-y BALLS) (which are expensive!) easily roll into the ducts when they are open.  Dog thinks it's fun.  Duct-cleaning-furnace-maintenance guy does NOT. 

Claire and I began the demolition process when the dumpster arrived a couple days before the contractor, with Reese looking on in confusion/horror, perhaps wondering if his humans had gone crazy (there may have been some raucous yelling while we bashed apart the old cabinetry and flinged it with glee into the dumpster):


Our strong-silent-type Contractor continued the demolition with careful removal of the 70's decorative bulkheads on the ceiling, and properly cleaned and repaired the sub floor to prepare for the new 12mm laminate flooring I chose (our house is too doggy and high traffic to have easily-destroyed hardwood).  


 

The Electricians helped us map out the grid for all new recessed lighting - I think the new pot lights are my favourite part of the reno?  hhhhmmm.. that and the dishwasher.  Yah baby - D I S H W A S H E R


Felt like we were camping in our own home for a couple weeks there, but worth it.

Cabinets started coming together, major drywall patching on the ceiling, flooring in half a room at a time, fresh paint... just a four-week wait for the new countertop. Beloved countertop...



The bench, with storage, for which the Warden is fashioning a cushion. :-) 


The hutch, for all the paperwork junk and technology our family loves to use:

Nod to my beloved Norwex representative for showing me awesome and environmentally-friendly products for cleaning the new sink!
 


And.... tah dah..... done! 







I have dreamed of this renovation for the 12 years I have owned this house, and it has turned out even better than I had imagined it would. It's like my very own little Make-A-Wish dream come true (except I got to pay for it all LOL).  
Many thanks go out to everyone involved, from the Home Depot folks who walked me through the whole design process, to the amazingly talented and cool-as-a-cucumber Contractor who became part of our family for the time he lovingly spent restoring my home to my specifications, to the family and friends who patiently put up with me through the process.  I have not been a peach to deal with some days.  Imagine!

I thought long and hard before making the decision to renovate while off work battling cancer; was it the right time to do it or should I have waited until I was back to work and had to deal with that stress as well as reno stress?  
I found it to be a surprising amount of work, it increased my busy factor by quite a bit.  Lots of decision-making and errand-running, not to mention packing, cleaning, and unpacking.  I thought I would want to and have time to escape reno commotion to catch up on visits with friends out of my house but it was just the opposite; any time I wasn't involved in reno stuff or every day  family stuff, I was doubly exhausted than my normal.  Thankfully Contractor made it easy on me, he is extremely neat and thorough, and considerate in everything he does.

We jumped in with both feet and just went for it, and now I am glad we did.  Not only is the kitchen more functional (especially for my bum leg the drawers are SO much easier to use!) it is more comfortable for us to relax, cook, and hang out in.  Our family and friends can sit and enjoy this fresh start and MY fresh start all together in one beautiful, healthy environment.  I am so grateful! 


Article & Photos © Natalie Richardson, 2015

...and in other news... Melanoma Awareness

We have had a busy couple of months around here, all the usual stuff plus kitchen renovation, Cassie's ankle physio/recovery, grade eight homework times two, the girls' play rehearsals for the Kids in the Meaford Hall production of Aladdin in December, kitchen renovation, my antisocial crankiness, trips to Toronto, oh and did I mention kitchen renovation?  Phew it has been a whirlwind!  Overall good though, lots to report.

With my "remission" revelation comes renewed energy and desire to promote awareness of melanoma and it's related issues.  In May I participated in a cool Melanoma Monday event in Toronto on behalf of Save Your Skin Foundation (SYSF), the La Roche-Posay Become a Skin Checker campaign.  I had also written a blog as a guest on the SYSF website, and spoke in a webinar on my perspective of survivorship, also with SYSF.  

I am pleased to report I have been asked to participate in another upcoming SYSF event also in Toronto.  I will be among a small number of people presenting to the Ontario Government in early December on the top needs of a melanoma patient going into 2016.  Patient advocacy is a large part of the work SYSF does, and I am happy to share my perspective as a patient on the melanoma experience as it is today.  I have been relatively fortunate in my melanoma treatment and I know I am lucky to still be here to talk about it a year and a half after diagnosis.  I wish to bring awareness to this disease so that other Canadians can also have timely access to treatment of metastatic melanoma. 

This week I am also booked for a conference call with a Toronto-based team managing an upcoming skin cancer awareness project in collaboration with Save Your Skin Foundation. It sounds like it will be a social media campaign bringing awareness to sun safety and some other stuff that I can't share just yet but will discuss if and when it works out.  I am looking forward to hearing more about it! 

More details to come...  In the meantime I will share one of my favourite photos from treatment days at Odette Cancer Centre, Sunnybrook, in Toronto.   It was a random photo I took of my bracelets.  My hospital ID, and my beloved charm bracelet given to me by a friend for Christmas, on which I have charms that I have collected as rewards to myself for milestones in the last couple of years.   I feel this photo shows many facets of the state of my personality at this time.  Juxtaposition of cancer treatment and my real life, if you will:


 PS - Just for the record, for those of you who may wish to ask: no I do not have a "return to work" plan in place as of yet.  I still have quite a way to go in my physical and emotional recovery, and I am still going to need time before returning to my very public-facing employment position.  I have been in shock for a year and a half, it is quite reasonable to expect that it will take some time for myself and my family to recover from that alone.  Just saying.  


Thank you for your continued love and support!

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.  
 

Monday, October 26, 2015

Good Intentions

October 26 today? Last post so enthusiastic about the lymphedema therapy journey to which I was hellbent on committing?  Dermatologist appointment postponed AGAIN?  Several friends questioning my actual existence due to (my) lack of communication?  Shit, it has been a busy few weeks. 

I find myself frustrated again today. Surprise!!  Not necessarily cancer-related, but I'm sure I will inevitably spin it that way.  Every day I examine my actions, more than I did before (cancer).  (See - did it already!)  I want to accomplish things, I want to nail that to-do list, I want to be everything my kids need me to be, I want to NOT be a downer to my friends, I want to survive my kitchen renovation without the hair loss I was fortunate to avoid during my immunotherapy... but I somehow always feel like I fall short. 

I'm doing the best I can but that "take one day at a time" stuff is actually very difficult to do.  When you break it down into small pieces and truly look at it and realise you're just too tired to do it all, it's a real pain.  I try, but.. what's that they say about the road to hell being paved with good intentions?

I ran into a friend today that I haven't seen in a while, and we chatted quickly to catch up "in code" in a busy store with our kids in tow.  I was open about the fact that yes I did want to get together for coffee and a visit, and I was also open about the fact that I probably wouldn't be able to commit to the actual coffee date in the next couple of weeks.  She seemed to understand and is equally busy, we hugged and wished each other well and we will try again in a few weeks.  *sigh*  I feel bad!  

More importantly what I got from the conversation is my friend's comparable feelings of guilt for not being able to do the things she "normally" does.  She happens to be temporarily off work for health reasons as well, and one of her first identifications of things we have in common right now is the guilt for being "off."  She said the same things I feel every day; in our quick conversation we bonded over that mutual feeling but we also agreed that we need to look after ourselves and our kids numero uno.   Why can't we just shake the rest of the feeling and just go with the looking after ourselves and kids thing?  Aarrghh

Part of looking after ourselves IS the visiting with friends and the social support we receive in doing so.  And I truly mean it when I say I want to visit!  But I notice that I am less and less able to commit to the coffee date.  With the people who are my FRIENDS!  
I am so absorbed with what my family and I are doing, and I am inconsistently and sometimes unexpectedly exhausted so I just run out of time.  Days run into weeks and my feelings of guilt compound until they feel like a noose around my scarred neck and I retreat, I hibernate, I listen to my therapist saying "stop being so hard on yourself!"  I love my friends from a distance.  And I keep plowing through the to-do list as I see fit.  

Therapist says that's okay, I (we all) should be doing exactly what I (we all) want. At any given moment.  Oohh that's a huge statement, what a can of worms!  I believe that if we all just ran amuck doing what WE want then everything would be a disaster!  But that could be my Catholic upbringing speaking... how do the Sociopaths do it, like really?? 

The core of what is bothering me I think is actually the number of times I have had this happen lately.  I haven't invited my veggie friends for a visit since.... ummm.. as I told them last week when I ran into them downtown - I still have their Christmas gift from last year!  I am the WORST.  We talked about having tea, they emailed me, I still haven't caught up on email.... and I have not had the visit.  And last week also I completely stood up another friend I haven't physically seen since I was first diagnosed - how the hell could I FORGET that we were going to meet?  I can blame chemo brain, but I really hate that.  I postponed my much anticipated lymphedema treatments again. My CCAC nursing visits too, I have cancelled the last three due to scheduling conflicts.

The road to hell is paved with good intentions is a proverb or aphorism. An alternative form is "hell is full of good meanings, but heaven is full of good works."
One meaning of the phrase is that individuals may have the intention to undertake good actions but nevertheless fail to take action. This inaction may be due to procrastination, laziness or other subversive vice. (I don't think this is me...)

Nonetheless, the saying is an admonishment that a good intention is meaningless unless followed through.

But how?  I WANT to have the friend visits.  I WANT to deal with the lymphedema.  I DON'T want to see the dermatologist...but anyway...  I think maybe I'm just tired of all of it.  I want my life back.  I cannot fathom that this is my "new normal."  I want to go to work, be healthy, run around doing everything all the time, not have to discuss why I am not at work and why I am so antisocial.  The stigma alone is worse than the diagnosis!  

I have no idea what to say when people ask me about my health.  My years of intermittent therapy-couch time have taught me to truly answer WHY I'm frustrated.  Well, this is likely it: I don't know what to say.  Metastatic Melanoma is a shitty goddamned enigma of a fatal disease and I am back to feeling like I have a digital clock blinking above my head counting down my time to live.  

I'm pretty sure that's simply Fear speaking, I don't have any medical-speak news as to why I feel this way. My last CT scans were same, no progression of disease. Unremarkable. Fantastic.  But I am still plagued with confusion about what to say when asked by friends how I am doing.  

I don't know.  I know I'm still here today, and I know I am helping my kids throw their kick-ass annual Halloween party again this weekend, and I know I have three trips to Sunnybrook in the first three weeks of November.  I know I'm still having major insomnia and I know I'd like to strangle the surgeon who made my baby cry a couple of weeks ago when re-opening her ankle surgery scars to remove TEN-FOOT LONG screws with a WOODEN screw driver!!

I can't get any more honest than that.  I hate everything. (to quote George Strait.) (Yes. George Strait.)

Thank you for listening, if you're still here reading my complaints, then awesome, yes, writing is therapeutic for me.  I wish I could learn to write FICTION!!   

Did I mention we are half-way through a kitchen reno right now?  I took a photo of my pooch the other day which just perfectly summed up my feelings.  He was looking all dejected curled up on the most uncomfortable part of the half-remodeled living room floor in the middle of all the renovation rubble and I couldn't help but giggle at that woeful little face:



PS - It's also full moon time.. that accounts for a certain amount of crazy in this household.  ;-)

 

Friday, October 9, 2015

Building a Team (New: Lymphedema Therapy)

Yesterday I met a very insightful lady. She was informative, caring, we have an interesting number of quirky things in common, and she gave me a headache.  Yes, a headache.  She worked me hard, though she did all the work: my first assessment and massage for treatment of my pain-in-the-leg lymphedema.

I have been procrastinating on this method of treatment for over a year, don't ask me why... I think it has something to do with general denial of my situation and having enough appointments to deal with already and being a busy Mom blah blah blah.  
I know that getting help with lymphedema is a whole-life approach, but I also know that if I want to fully rehabilitate my body after the beating it has gone through in the last year and a half, then I have to stop weaseling out of the lymphedema appointments and get my ass in gear. Literally, like hang that mole excision scar out there and let a professional help me with the healing.  

Indeed as I suspected, I will be learning how to properly care for my limb post-surgery, and that includes a holistic methodology for my head-to-toe mess.  Diet and fluid-intake tracking, walking and post-cancer exercises, massage therapy, manual lymph drainage, stretching/yoga/pilates, oh dear this is as big as I was afraid it would be.  

In my experience, fear and procrastination go hand in hand.  BUT, due to the nagging - Ahem encouragement! - of the Warden, the Curser, the Cheerleader, and my girls, I finally dragged myself to the lady who has studied hard to become qualified enough to deal with me.  

And I am glad I did.  I am ready to give myself the time and energy that I have known all along I need to do.  I will have to work hard; though she was very caring yesterday I detect a hint of Drill Sergeant in her therapy and I will be held accountable for my part in this effort.  We will work together.  

Work me she did too... the lingering headache is actually a side-effect of the detoxification she massaged my remaining lymph nodes into doing.  She explained the basics of the technique and informed me that I will learn how to help with lymph drainage as my homework also.  Eeek... for over a year I have pretty much avoided contact with my right leg as much as possible because it is uncomfortable.  There is a unique combination of heaviness, numbness, and tingling that plagues my every day use of the leg, but it turned out to be okay for her to touch it.  Out of my comfort zone I jumped, and gave it a sincere try. 

Patiently she listened to my story and what my concerns are now with my body, and she gently reminded me that I am not alone in this journey and to just take it step by step.  She said something I identify with: I am "building my team."  She is correct, I have a huge team and I am apparently still building it.  In addition to my loving family(ies) and friends, my medical team is growing in the diverse way I have always wanted it to. 

It did help that we had calming quiet conversation about our commonalities, namely Motherhood, Melanoma, and even Maserati! I like this lady - she was in Europe earlier this year so we talked caprese salad and Italian coffee.  My goals mesh with her experience, and I am grateful to have met her and to be working with her. 

I will be going back weekly for the near future, with my notebook detailing diet and activity and any patterns I may notice in the progress of my lymphedema limb.  I can tell already, I will learn a lot about how my body works with regard to lymph and glandular function.  Stuff I thought I already knew enough about!?  HA. Learn something new every day.  

Couple of neat points I learned yesterday about lymphedema:
  • lymph fluid (I know that sounds gross!) is a protein-rich fluid which travels along the lymph nodes throughout the body, helping the body to expel toxins and waste stuff through the pores, perspiration and saliva.  
  •  anyone with lymphedema has to watch for infection in that limb - especially cuts or insect bites - as it can become a problem very quickly.  Patients with advanced lymphedema (which mine is NOT) can be so vulnerable even as to have a standing order for antibiotics that can be filled immediately upon a danger sign, that is how quickly infection can become a problem. 
  • my affected areas are two-fold: my right leg from the node dissection surgery for metastatic melanoma in May 2014, and my left shoulder and neck area from thyroidectomy and removal of 37 lymph nodes for thyroid cancer in December 2014.  I am permitted to consider getting a new tattoo after my clinical trial is completed, but I am not permitted to get it on my left shoulder as I was thinking I would.  Interesting for sure (and not a devastating piece of information, I just thought it was intriguing)

Friday, October 2, 2015

The "R-Words" in Cancer

Long before I was ever diagnosed with the big C, I rode along the congratulatory wave whenever in the presence of someone declared "In Remission."  

I didn't really know what it meant, except that it was good, and that commonly, after a number of years "In Remission" a cancer patient could call themselves cancer-free.  They could also resume normal living, recover from treatments, and reside in the general hope that they would remain in remission and their cancer battle was one they could proudly refer to as having been in their courageous past.  

I have yet to hear any of my oncological team say that word, in reference to myself or to anyone we have spoken about.  I don't know if it's an 80's term?  Or one for cancers other than melanoma?  Or a fictional definition?  

It can't be fictional or old-fashioned, because I have several cancer friends and family members who have been officially titled In Remission.  For years in fact, and recently!  
My vision-of-beauty breast-cancer Survivor Auntie for example, and my world-traveling Gramma who is surviving not one but two diagnoses! My Uncle too. And my local friend who battled a brutally complicated tumor and has worked incredibly hard to recover and create her new normal.  I even met a friend in a support group in the winter who is battling her FOURTH primary.  That means four different cancers throughout her life, and she is still fighting.

All very inspiring people who have every right to be proud of their accomplishments and bravely continue their fight every day.  I look up to them, and I admire them, as I do all of the cancer friends I have met along this journey, whatever stage or phase they may be at.  

I envy them as well.  I want to be In Remission.

In my experience, I am consistently informed of another R-word in cancer: Recurrence.  I have written this word in passing several times, but until now have not really explained it.  

I remember thinking a few years ago when a friend was explaining details of his wife's cancer that I couldn't possibly ever understand the kind of stuff he was talking about, the words and phrases and percentages and what it all meant!?  But now I throw these words around without taking into consideration that those listening to me may wonder what the heck I'm talking about.  

Dictionary.com gave me these definitions:

 Remission (Medicine/Medical):
  • a temporary or permanent decrease or subsidence of manifestations of a disease.
  • a period during which such a decrease or subsidence occurs:  The patient's leukemia was in remission.
  • A period during which symptoms of disease are reduced (partial remission) or disappear (complete remission). With regard to cancer, remission means there is no sign of it on scans or when the doctor examines you.
Recurrence (Medicine/Medical): 
  • A return of symptoms as part of the natural progress of a disease, as in relapsing fever. 
  • Cancer recurrence is defined as the return of cancer after treatment and after a period of time during which the cancer cannot be detected. (The length of time is not clearly defined.) The same cancer may come back where it first started or somewhere else in the body. 
My future is based on my likelihood of recurrence.  I have diagrams drawn by my oncologists depicting what the percentages and statistics say about my two primaries (Papillary Thyroid Cancer and Nodular Melanoma), and I struggle every day to overcome the numbers that seem to be very clear to my medical professionals.  

I am at "Intermediate" risk for recurrence of papillary thyroid cancer, based on the results of my post-radioactive iodine treatment full body nuclear medicine scan in March.  Here is a very informative website re-capping much of what I have described or am experiencing: American Thyroid Association

As for the melanoma?  Not so easy to define, and certainly more depressing.  The reason for the 68-week clinical trial was to try to extend the time before inevitable recurrence of melanoma.  Typically someone in my situation after the node dissection surgery I had in May 2014 is given approximately nine months until the melanoma "returns" or is detected elsewhere in the body.  The pacmen are the best defense at the moment to delay that, by another nine months to a year.  

Thankfully I can report some melanoma patients have a much better story to report than that.  Save Your Skin Foundation founder Kathy was first diagnosed with stage IV malignant melanoma in 2003 and she is still here fighting - and very vocally fighting, I might add.  She had four treatments of the same stuff I had eight doses of, so here's hoping I got the same lot as she did!  I have not heard Kathy use the word Remission, but I have heard her use the word Survivor.  And for much longer than nine months.  

Every three months I await my CT scan reports... remission? or recurrence?

My heart goes out to cancer friends who experience recurrence; I have been thinking of two ladies in particular who very recently have been prescribed places back in the hot seats: CT, MRI, bone scan, Chemo, Radiation, all of those words are back in their daily vocabulary.  It is terrible, and catches one by scary surprise.  

It is this ominous mystery in a cancer patients life that gives them equally the right to celebrate survivorship as it evolves, and to dread the possibility of recurrence.  It is that which defines how the cancer journey molds a previously "normal" person into a completely new being.  


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What is metastatic melanoma?

Melanoma a type of skin cancer that forms in the pigment-producing cells of skin, mucosa, eye and rarely other sites. Metastatic melanoma is melanoma that has spread to other sites of the body. The spread occurs through the lymphatic system and/or the blood vessels. Melanoma can spread to the subcutaneous tissue which lies underneath the skin, the lymph nodes, and to other organs such as the lungs, liver, to bone or to the brain.

Metastatic melanoma can be classified into local recurrence, in transit metastasis, nodal metastasis and haematogenous spread.   I am at high-risk for the first three.

Local recurrence of melanoma

Local recurrence is defined as a recurrence of melanoma within 2cm of the surgical scar of a primary melanoma. It can result either from extension of the primary melanoma, or from spread via the lymphatic vessels.

In transit melanoma metastases

In transit metastases are melanoma deposits within the lymphatic vessels more than 2cm from the site of the primary melanoma.

Nodal melanoma metastasis

Nodal metastasis is metastatic melanoma involving the lymph nodes. Every site on the body drains initially to one or two nearby lymph node basins. The lymph nodes first involved are the regional lymph nodes. Usually the involved lymph nodes become enlarged and may be able to be felt.

Haematogenous spread of melanoma

Haematogenous spread is spread of melanoma cells in the blood stream, which can happen either by a tumour invading blood vessels or secondary to lymph node involvement. Once in the blood stream, melanoma cells can travel to distant sites in the body and deposit. It can proliferate in any tissue but most often grows in the lungs, in or under the skin, the liver and brain. Many patients also develop metastases in bone, gastrointestinal tract, heart, pancreas, adrenal glands, kidneys, spleen and thyroid.  

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 Article © Natalie Richardson, 2015