March is Lymphedema Awareness Month

Over the years I have written quite a bit about my experience with lymphedema - secondary lymphedema in my right thigh, from surgery for melanoma skin cancer. Lymphedema (lim-fa-DEE-ma): lymphedema is a lifelong condition caused by a buildup of lymph fluid. This happens when the lymphatic system is either faulty or damaged and cannot function as normal. It leads to chronic swelling in the tissues where the lymph flow is blocked.*  I've dabbled in pursuing treatment for this but will admit I have not yet established ongoing management of it. Still on my to-do list. Mike also has lymphedema, from the same surgical procedure for melanoma, but it settled more in his foot. 

In any case, having bolstered a bunch of melanoma-related patient support and education initiatives with Save Your Skin Foundation and on my own over the years, I am now adding a lane, and lending a hand with lymphedema patient support. Recently I have joined a team in Prince George who are planning a Lymphedema Education Conference later this year for Physicians and allied HCPs in the Northern Health region of BC. I am happy to be working with an esteemed local Physiotherapist who is leading the initiative; I will support with my event planning and tech experience. 

Not only am I learning more about lymphedema, and the needs of patients, but through this project I am learning more about the health care system in our region, and the access to resources that Physicians may or may not have. 

Our group is excited to be planning this informative event, which will consist of a full day for Physicians, including a lymphedema care doctor guest speaker from Ontario, and then a half-day for allied health care providers on lymphedema care and bandaging, etc. While planning all of this we are learning about the process of hosting - and funding - an accredited conference for Physicians. It's a big undertaking! But a necessary one, as continuing lymphedema education fights for attention just as many other medical infirmities have to. 

View this video from Shirley Bond, MLA, Prince George-Valemount speaking about World Lymphedema Day and the local work and recent initiatives underway in our area:

I'll update with more information when I can, but in the meantime, I'll end with a shout-out to the 1 million Canadians impacted by lymphedema and bid them a healthy Lymphedema Awareness Day. 

For more information, please check out the Canadian Lymphedema Framework, and/or the lymphedema association in your province:

Canadian Lymphedema Framework

Blast from the Past

A few weeks ago I had major surgery - unrelated to cancer, not to worry - and I can't help but notice how the whole experience took me right back to 2014 when I got a diagnosis of advanced melanoma. If you know me from those days you will remember my tales of traumatic surgeries, bizarre post-op procedures, life-saving immunotherapy treatments, and all that goes along with. 

It is a head space that a cancer patient may endure for all or part of their journey, or they may go in and out of it as the situation strikes - our "Cancer Companion" as my therapist called it. When your Cancer Companion taps you on the shoulder, you may need to sit with them for a while, work through it, maybe hear them out, maybe tell them to piss off, but they will choose when they may leave again or come back. Might as well keep the kettle on the back burner as you never know when they could drop in for tea.  

My cancer companion has found me here in my new home in northern British Columbia, where for the last few months I prepared to have a full abdominal hysterectomy.  One benefit of regular CT scans for surveillance of melanoma (I have been N.E.D. for six years but will be monitored for life to check for recurrence) is that things can show up that one may not have know about otherwise.  I have had some trouble with my "lady plumbing" for a couple of years now, nothing too crazy, or concerning enough to look into - I kind of assumed it was just related to peri-menopause. My Mom seems to get a particular chuckle out of telling me that I am "at about that age." Thanks Ma LOL

But when my new GP reported that I have lots of fibroids in my uterus, and we cross-referenced that with my ongoing situation of low iron/hemoglobin which has led to anemia, it seemed like the time had come to investigate further. I had been having some new tummy pains on top of the monthly aggravation, and some early steps to helping the anemia did give me more energy, so I agreed to a consult with a Gynecologist.  45 seems like a good time for a tune-up, right? 

I'll spare you the gory details, but the Gyno did her exams and biopsies, and gave me a thorough and much-appreciated presentation on my options for remedying a fibroid uterus.  Given all my variables a full hysterectomy sounded like the right option. 

So I signed the consent forms, remembering all the paperwork I filled out to take part in the clinical trial at Sunnybrook in 2014, and sat back to relax until my year-long wait for a surgery date would come to fruition (thanks covid, for the extra delays in our health care system).  On my way out of her office, the Gyno commented that if I was to end up in the hospital or have a blood transfusion to let her know, as that could shorten my surgery wait time.  

Weird, I thought... why would I have to have a blood transfusion?   And went on with my day. 

Fast-forward a month from that time, to a night in early November. I was having a particularly tough time with my "cycle," and was taking a new-to-me drug from the Gyno to help with that. Apparently weird reactions or allergies to random drugs runs on my Mom's side of the family, and I ended up in the emergency room at 3am with the most severe abdominal cramping I have ever experienced. Like - worse than be in labour with and give birth to TWINS bad.  

Poor Mike - my loving partner and reason I moved here to Prince George - not an ideal time to introduce you to this fabulous man, but I digress... Mike sped me to emerg (he happens to be an epic race car driver, actually) and advocated for me when I was unable to speak (Mike is also a melanoma survivor - he takes no guff!). 

An hour or so in, bloodwork assessed, morphine running through veins, x-rays inconclusive, I was able to speak to the doctor while we waited for an emergency CT scan. She said my hemoglobin was dangerously low (hhmmm where had I heard that before..?) and she wanted to give me a unit of blood while we wait to see if I would need some sort of surgery or procedure to deal with this mystery lower-abdominal pain.  

A blood transfusion? Must admit, that freaked me out. Not only did I feel that those are only for people in accidents or emergency situations, I was a bit weirded out by the thought of having someone else's blood given to me.  If you recall, I have always been a supporter of blood donation and always wanted to give it - but it never occurred to me that I would ever be on the receiving end. 

I'm happy to report that they were very careful about the procedure for this, testing my blood again for some sort of matching criteria, blood type etc., and then giving me a special green band with a code to match the labels on the pint that would arrive soon as my new gift. I was nervous but grateful. 

Long story short, two nurses arrived and read my bracelet codes aloud and triple-checked the green card on my new blood, it went in via IV for an hour or so, I had my CT scan (which was also inconclusive), and I was sent home.  The mystery pain had disappeared, and I was repeatedly assured that nothing on the xrays or CT showed any masses or problems that could be related to melanoma, which I was pretty confident was right as I had just had my melanoma-surveillance scans a few months prior.  As far as I know the pain was caused by my weird and apparently uncommon reaction to the tranexamic acid. In any case it was gone, and I was home, exhausted, and with a couple days off work to recover. 

One result of this however, was a phone call to my Gyno to let her know I had had to have a blood transfusion, and a subsequent iron infusion, so.... poof that got me on the emergency surgery list and I was scheduled for mid-December.  *gulp*  Surgery, full on. The goal of this hysterectomy is to get rid of the fibroid uterus, and with it any chance of random crazy pains, but also to stop the extreme monthly loss of hemoglobin and give my body a chance to fix the anemia.  

So here I sit, 3.5 weeks post-op, comfortably tucked in and recovering well in the grand scheme, pampered by Dr. Mike. Can't help but have some mega deja vu though, after a major surgery with all that time to stare at the ceiling between pain-med-induced naps I couldn't help but remember all that I/we went through years ago.  And I have the exact same feeling of that in-between and frustrating phase of starting to feel better but still not being quite up to snuff... no driving, reduced work capacity, etc. This surgery requires a full eight weeks recovery, no heavy lifting and all that stuff.  No snow shoveling either - bad timing with this PG winter! 

While I rest and recover, figure out some adjustments in my career (more on that later), and reflect on "life after cancer" I find myself here, blogging.  Hello old friend!  If you only knew how much credit you deserve for getting me through 2014-2016 wowww... you are amazing. I think of you all the time but never give us time to spend together. Well guess what - 2022 is our year. :-)  

Might have to re-name this blog to "Menopause, Melanoma, and making it to my Maserati"  haha!  But we shall see... and of course I'll keep you posted.  My desire to share (bitch about) medical experiences is never far from the surface, and of course has served as a perfect segue back into writing here on my blog.  Thanks for reading! (apparently I have not lost my long-windedness)

And thank you to my gorgeous grown-up girls who have been a huge support from a distance.  It was weird for us to be so far apart during this recent hospital event, when they were so entwined in the past. But they are excelling at their exciting Toronto lives, and we are always connected by skype (yes, people still use that), TikTok, and bank account haha.  They connected with Mike too - I suspect they warned him of my post-surgery whiny-ness and consoled him by text, though he is a champ caregiver and claims I was angelic and wonderful. Ahh love... 😇 😍  Thank you Mike 💖

Timeline - April 2014 to Now... (April 2015)

I have been reminiscing since our trip to the beach yesterday, one year almost to the day of this photo from last year:

Cassie last April 8, 2014 ---^    

...and Cassie this April 6, 2015:

(just for the record, she cut her hair off last June to raise funds for Cops for Cancer, and has just kept chopping ever since!)   :-)

We make an annual early-spring trip to the beach at Memorial Park, typically around March Break, and usually there are still bunches of ice and snow on shore, lots of little "icebergs" and plenty of sandy mud to explore.  We run and squeal and goof around until we all get freezing cold soakers and then we speed home with the car seat warmers on high and ditch our cold muddy pants and socks in the washer, giggling all the way.  

I seem to take the exact same photos every year, I never get tired of this view:

(Claire, 2008)  :-)

Looking at last years photos triggered my trip down memory lane, the evening the girls and I went to the beach was a few days after the disfigured mole on my hip/leg had been initially removed, a missing chunk of meat and a line of stitches had kept me down and out for a few days; I did the bare minimum at work and lay on the couch the rest of the time.  We had just returned from the girls three-day grade six field trip to the Outdoor Education Centre in Oliphant, and our contractor was remodeling the main floor bathroom.  I had been feeling so sore and startlingly upset over the surprise mole excision, that I had neglected the girls for almost a week.  

The evening of April 8, 2014, I felt well enough to get off the couch (I had no idea at the time that that was to be just the beginning of my prescribed bedrest time!) and we trucked off to the beach to check it out. 

My leg was sore that evening last year, but nothing like it was yesterday.  I don't have a tonne of pain at this point in my journey, it is a different kind of discomfort.  I am even more clumsy than before: I tend to be tippy, especially easily thrown off when my right foot hits uneven ground. Between heavy, slow-to-react right leg, and topsy-turvy concussion symptoms, I stumbled all around the bumpy terrain on the beachy ice and mud yesterday and wiped out twice, being the record first to get the soaker!! 

It was super fun, and nobody got hurt, but I couldn't help but notice how different things are now, in fact, after one of my falls Cassie walked with me and held my hand "so that you don't get another concussion Mom!" - she even asked me if I had happened to have a sip or two of tequila before we went to the beach?? HA HA Cass, NO, I did not.  I just have to slow down and remember that I am not quite yet back to my mountain-goat-like graceful swan self.  LOL  Lymphedema alert... watch yourself on spring beach ice!

So yes, a lot can change in a year.  It is now April 2015, I have been off work almost a full year (which is longer than I actually WORKED there, as I started in July 2013), the new bathroom is already showing wear and tear, and my children are old (and bold) enough to ask me if I got tipsy before taking them to the beach.  *SIGH*

I do get lots of feedback regarding how long I have been on this journey, so I thought I would take a moment and chronicle it to date, put to rest any curiosity or questions:

April 1, 2014 - I had Claire at the doctor's to check on her sore throat/fever, and she saved my life.  Claire said, in front of the Dr., who was until that time unaware of the mole nagging the back of my mind, "hey Mom, while we're here why don't you show Dr. your mole?"  So I did.  Doc immediately referred me to the surgeon in Collingwood, and Claire deserves the credit.  

April 3, 2014 - I drove myself to Ambulatory Care at Collingwood Hospital, thinking I was having a consultation with a dermatologist, and I left a couple hours later missing half a pound of flesh and reeling from the apparent reactions of both surgeons who worked on my leg. I was to go back in two weeks to have the stitches removed and get results from pathology. 

One day the week after-ish? - the surgeon's office called and told me I would have to have a Sentinal Node Biopsy, that the mole and surrounding tissue was positive for Melanoma.  My family Doc phoned me that afternoon as well and explained more, as I cried at my desk at work, with my co-workers supportively rubbing my back and then packing me up and sending me home.  

April 17, 2014, the day before Good Friday - I had my stitches removed at the Collingwood surgeons hand, and underwent a needle biopsy of a swollen lymph node in my groin area, where my abdomen meets my hip - extremely painful.  Lymph node biopsies are worse than childbirth.  I went home and stared into space throughout Easter weekend, afraid for my life.  

My Mom came home early from their winter in Florida.

April 23, 2014 - I was lying flat on my front deck in the spring sun after work, trying to be calm, waiting for the phone to ring.  My family doctor called me with news and an explanation of my biopsy results. The first thing she asked was "Who is there with you?"  Nobody, but the girls were due home from school any minute.  "Okay... Are you sitting down?"  Mark my words, it is bad when your Dr. starts a conversation with you in that way.   It was official, I was diagnosed with Stage 3b Invasive Nodular Melanoma.  Right there in my kitchen.  

I did not go to work the next day, except for a brief meeting with my boss to let him know what was up and that I would need some time off for the upcoming hospital visits and testing.

April 24, 2014 - I received my first call from an Oncologists' office, I was to see a team at RVH in Barrie the NEXT DAY, and on my way home I was to have my first CT scan in Collingwood.  Mom and the girls accompanied me, and Mom stayed for the weekend. I also received a call from my new surgical oncologist at Sunnybrook in Toronto, I was to be there on Monday, and please bring a CD of the images from my CT scan.

April  28, 2014 - My introduction to Odette Cancer Centre at Sunnybrook Health Sciences Centre. Consultation with surgical oncologist, I signed consent forms for surgery and received a big envelope full of pamphlets and forms.  Mom and I drove home from Toronto mostly in silence.  We were told to expect a call within a couple weeks with a surgery date. 

I no longer kept my frenzied work schedule, and I used what little time/energy I could give to work without bawling my head off preparing my department with plans for me to be away for a while, probably until Autumn? 

May 16, 2014 - Surgery at Sunnybrook:  They re-opened my mole scar and took a bunch more, thankfully I did not require the skin grafting they had prepared me for the possibility of waking up with.  The second part of the surgery was what is called Node Dissection, right groin, spare you the gory details - they removed 13 lymph nodes and a bunch of who-knows-what-stuff, sending me home after an agonizing night on morphine to be on total bedrest for eight weeks.  Mom stayed with us for a couple of weeks on and off, I do not remember much of it.

June 17, 2014 - I met my medical oncologist, with whom I am still partnered, she is the Boss of my clinical trial drugs for Melanoma.  She explained my options to Scott and I, drawing diagrams of percentages and possibilities for my life expectancy. 

June 20, 2014 - Mom and I met with the team at RVH Cancer Centre, got second opinions on the Toronto offerings.  This new drug was not available in Barrie, I needed to decide how to proceed.  On my own.  Here's all the info.. we don't know what to do but here is what we suggest - now YOU pick! 

All of July 2014 - agonizing decision-making as to how to handle the treatment of MY melanoma, while recuperating from invasive surgery.  Finally decided to go with the clinical trial, and had my first CT scan at Sunnybrook, three months since my first CT scan in Collingwood.

August 11, 2014 - Had first of eight ipilimumab(Pacman) treatments at Sunnybrook.  The first four treatments were three weeks apart.  The next four are three months apart.  (April 2015 brings my sixth treatment, July 7th, then September 8th treatment, end of this trial)

August 28, 2014 - Had an ultrasound of the neck/throat, to investigate something they saw on July CT scan.

September 17, 2014 - Had a needle biopsy of the lymph node in my throat (hateful!!) to further investigate something they saw on the August ultrasound. 

One blurry day the following week - My family Dr. phoned me on a sunny afternoon, "Who is there with you? ...Are you sitting down?"  I was diagnosed with Papillary Thyroid Cancer, it had spread to the lymph node(s), I needed surgery and would be immediately referred to the best Head & Neck Oncological Surgeon/Specialist at Sunnybrook. 

Guess I was not destined to return to work in the Fall.

September 27, 2014 - I started this blog.  I could no longer keep up with all of the information I wanted to share, email and text messages weren't cutting it for response to all of the amazing support and TLC my family and I were receiving, and I was more than ever allergic to talking on the phone.  I wanted to express myself by writing... my old standby.  In consultation with my appreciated blogging/writer friend, I named the Impatient Patient Momma and was gifted this fantastic logo/image (in case you have not noticed it at the bottom of this page).  Thank you, S:  

December 3, 2014 - I had surgery in Toronto, a full Thyroidectomy, and they removed two of four parathyroid, and 37 lymph nodes from my throat and neck. 

Spent Christmas spoiled by many family and friends, resting, recovering.  January and February: licking my wounds, adjusting to all of the changes in my body in the last year, and...

Fast forward to March 23, 2015 when I had my Radioactive Iodine Treatment for thyroid cancer, and you know the rest.... Here we are! 

I'm not sure what the next year will bring, but I have no doubt it will be eventful and interesting!  I will be keeping you posted, thank you for being there for me.  I appreciate all of the support I receive, immeasurably!! 

Article & Photos © Natalie Richardson 2015

My assessment of my medical team

In the past year I have gathered quite a collection of concerned medical professionals, they invite me to their workplaces and give me rafts of paper and needle pokes and bruises and they work to keep me alive.  I learn from them, I get scars from them, they make me cry, they make me laugh, they confuse me and they amuse me.  Time for me to give something in return... 

I have mentioned before the "posse" of friends and family that are incredibly supportive to myself and my family, and I have come to recognize the individuals in my posse inadvertently have different roles ie. the Cheerleader, the Researcher, the Curser, the Warden, the Florist, the Chef... My cancer posse is my lifeline. Or my pillow and blankie. 

Rightly adjacent to my cancer posse is my medical team.  I want to share their specialties in the way I see them - maybe it's the chemo-brain perspective or just my imagination running wild - these descriptions are not meant in any malice, and I will not mention their names as I do not intend any slander.  Just sharing one angle of my perspective on all of the medical people that make our health care system go round.  

I'll start with the Endocrinologists - they are the Nerds of the crowd.  Sorry guys, don't get me wrong, I love nerds (have been called one a time or two!!), and we need you brainiacs to sort out whatever mysterious stuff goes on in our endocrine systems.  Who better to be expert on glands and hormonal systems than the nerds, I really don't want them to mess that up! :-)

The Surgeons:  I have had the unique pleasure of experiencing four surgeons to date, and my assessment is that they are the Artists.  They are masters with their hands, they aren't afraid to start something intangible and stick with it until it is done to their satisfaction.  They flit around in their decorative head covers and sometimes even sing during surgery. True story!

The Anesthetists, they are the Invisible Man.  You see their names on your surgery reports, you meet them, and then halfway through your greeting to them zzzzzzzzzzzz they're gone.

The Dermatologist:  She is the Ice Queen.  Flawlessly fair-skinned and floating above her chair, she obliquely addresses my situation with the air of knowing that it is because of people like me she has to shake her head and tisk any time anyone anywhere sees a ray of light from the big bad sun.

The Radiation Oncologist (with whom I meet every six months but have not actually had her treatment):  she is the Goth.  She likes tattoos and to zap people.

The Social Worker: the Heart. The private place where I can indulge my emotions, good or bad... or as the Heart would say: embrace the comfortable and the uncomfortable feelings.  

Nuclear Medicine Physicians:  I have not yet met them but I suspect they will strike me as the Experimenters, they are the children of those fathers who secretly built rocket ships in their basements.  We actually had one of those in the small town where I went to high school... I remember their street, and the eerie glow coming from the end of it. 

The Medical Oncologist:  She is The Boss. The MOB Boss.  She is on top of everything, she's smooth, she's good, she's got my back, she wears leather, she's my very own Tony Soprano.

The Nurses:  they are the Flowers.  They are all over the medical garden, at the reception desks, on the phones, in the hospital rooms, at home, everywhere you want them to be and sometimes where you really don't want them to be, but you appreciate them regardless. There are sunflowers and daisies, aloe vera plants and forget-me-nots, roses, definitely not pansies!  And there are also the likes of stinging nettles and thistles (such as the one who I reported to her supervisor for yelling at my elderly/disoriented/post-op neighbour in the middle of the night. Grrr!), so beware... treat them all with sugar-water and step lightly, they have the ability to make or break the scene. 

The Lab Technicians, obvious: Vampires. 'nuff said. 

The Naturopathic Doctor: the Neglected House Plant.  I want to run to my valuable green friend but I can't find my way to her from this pharmaceutical maze in which I am trapped.

The Radiologists: Sherlock Holmes.  They read black and white pictures of my insides and discover clues to my medical mysteries. It is Professor Plum in the Liver Room with the Poisoned Apple!

Mmm..the Pathologists: oh wow, I haven't yet decided, as I try not to think of them too much, they have only given me bad news to date, well except for the girls' moles, they did redeem themselves a bit on that one.  I imagine they liked to play in mud when they were kids, they are the Mud-Pie Makers.  They dissected dead creatures they found in the dark forest and created haunted doll house fences with their tiny bones.  

The Family Physician, She is the glue that holds it all together: the Saviour.  She makes sure I am sitting down before she gives me bad news, and she picks me up when I fall anyway... she medicates my pain, and soothes my shattered nerves, she answers my questions and thinks of me even when I am not bugging her. She kicks my ass.  She calls me to cheer for the good news.  She is my Interpretor, my liason with the world of oncology, she is my mother, my sister, my guardian, and my Hero.  She is the person I want to be when I grow up. 

Article © Natalie Richardson 2015

Well... THAT happened.

Hello, I'm back!  I'm still in bed but starting to return to the land of the living.  Sorry for all the texts and emails etc I have not returned, please accept my thanks for your love and support!  I will soon be back to bugging you and blabbing on and on again.  That's a promise.

Sooo.... just for the record, I feel justified in having dreaded this thyroid surgery so much, it was certainly worth it. LOL  Does that make sense?  I may still be under the influence of some lovely prescription narcotics so writing could be sketchy..... ;-)  It was deserving of the dreading, is what I am trying to say. 

Just wanted to post a very quick synopsis of what happened in Toronto and since.  

First some great news - this morning Claire's Dad took her for her xrays for her broken ankle and YAY she can ditch the crutches and put weight on the ankle! One more week of air boot cast then a week or so of tensor bandage but overall: relief of the crutches!  

The girls' play went off without a hitch over the latter part of last week.  I am told each performance of Lion, Witch and Wardrobe presented by the Kids in the Meaford Hall group was fantastic and very fun.  Claire and Cassie the "wood nymphs" were chauffeured to and fro by Baba and GeeGee and ate and napped in between and had a blast!  I can't wait to see the dvd.  Thanks to all who attended and helped the girls enjoy their time onstage so much. :-)

As for my sorry ass, I can answer a few common questions I seem to be getting, just in quick point form, then I will be back to napping.  Major sleeping these days holy, I am so completely pooped.

• Tues. aft we saw medical oncologist for the clinical trial consult, everything still on track to go as planned, next Pacmen treatment for Melanoma is Jan. 19, 2015.  And no, unfortunately the pacmen won't go after any thyroid cancer cells possibly left behind, it is specific to melanoma only, which is why the surgeon worked so hard to remove as much thyroid area as possible so that hopefully I can avoid iodine radiation treatment which could affect my trial drug treatment schedule. Med. Onc. and Thyroid Surgeon working closely together - thankfully!
• Surgery was Wed. a.m. first thing, I spoke with surgeon before going under - I think the part I hate the worst about surgery is having to climb onto the cold operating table myself and lie there while they talk to each other and hook stuff up to me knowing that I am about to have who knows what happen while I am asleep.  It is literally terrifying.
• Surgery took 4+ hours, ended up being far more extensive than originally thought, and I now have 32 (yep, Mom counted) staples circling my throat.  Dr. Higgins told Scott that he took as much as he could so as to try to avoid having another surgery.  I have a drain in the incision as well, but it is working well so hopefully my homecare nurse can remove it tomorrow.
• Total thyroidectomy, and central and right node dissections as well, plus extensive work on the left side, in fact the left is worse for pain and swelling so I am looking forward to reading the surgery report and pathology reports to see what happened??  Also he took two of four of my parathyroid? which I am told is crucial to calcium levels so I am being  heavily supplemented and monitored for calcium. 
• Have another fistful of prescriptions, major calcium supplements to take 3x daily for a month, plus the thyroid hormone replacement for the rest of my life.  
• Night in the TEGH semi-private was better than the night in Sunnybrook short stay unit, the nursing staff was far better than I had feared they would be after the dismal pre-op appt.
• Post-op recovery not as great as last time, very heavy chest and lots of coughing even still today, which hurts. Nausea too, darn no purple tarantula this time? 
• Long story short we got home around 8pm Thursday, major traffic jams longest day ever but got home phew... and sadly Scott had to quickly pack up and head to work back downtown Toronto for Friday morning rushhour! :-(  Poor guy - don't know how he handled it all but he was amazing.  Thank you Scott!  <3
• Everything at home has been great too, the Warden mothered us all over the weekend while I primarily sleep, she has gone home now and a new Warden is coming, Iris, the girls' other Grandma, to help taxi, feed, and shuffle my adorable and busy offspring. Thanks in advance Gramma - I'm staying downstairs!! ;-)
• I am able to drink, cool liquids especially yummy, protein shakes and chicken broth with the odd coffee for good measure.  I can eat, but chewing and swallowing meat is a terrible feat right now so screw it, handy I'm not hungry anyway! It's hard to open my jaw much anyway and I still have a tonne of swelling on my left side so it's fairly painful. 
• Pain is better than I thought it would be, it is manageable which is good.. and I did figure out how to wash my hair and brush teeth this morning - nothing like a Monday morning to get you moving. I cannot get my incision wet so thankful for the handheld showers we have plus all my practice after surgery in May.
• And the incision.... yes... it is large. It is uncovered and wide open for viewing, you can't miss it, and I think it is totally GROSS. Frankenstein jokes abound LOL  and its OK, I don't mind.  The girls aren't afraid of it so that is my main concern, I freaked out when I first saw it but I am assured it will heal well and scar should be minimal.  It is disgusting, I can say it.  
• I have not had much company and honestly I just can't right now, it's too tiring and painful. AND GROSS! Kids Grandmas and nurse is all I can handle, especially 'til the drain comes out. But I am feeling better every day so should be more mobile faster than the May ordeal.  
• Post-surgery appointment is this Thursday, hoping at least some staples can come out then?  But will see.  

OK think that covers it.. thank you again for your wave of support.. I need it, and I appreciate it without measure.  xoxo

Pre-Operative Assessment Clinic

You might think that at your Pre-op you would get a feeling for what to expect in your upcoming visit to the hospital at which your surgery will be... a feeling for the facility and the nurses and the other medical professionals that will be taking your life into their hands.  What to expect when you're under the knife, and how you will be handled afterward.  

I am here to tell you that that is not always how it goes - or at least I hope that is not why my day went the way it did yesterday!

I left the building with more confusion than I had when I went in, not very much confidence in the staff that looked after me, and with painful bruises on both of my cubital fossa! (hehe cubital fossa = the inside of your elbows, like, where they put in the needles to take blood - brutal vampire nurse yesterday, just sayin'!)

My Mom and I bombed down to Toronto East General Hospital yesterday to get the lay of the land for my surgery next week, and to provide health stats, bloodwork, and any information about my life that my surgeon may be missing; get all my ducks in a row for surgery.  Other than the bloodwork I think it could all be done by phone or skype, or fax, or smoke signals..?   But no, I had to physically trip down there to dot the i's and cross the t's.

I have done this before, I clearly remember how my pre-op was at Sunnybrook before my surgery in May, and it was no fun either - I am starting to think it may just be a symptom of pre-op visits that they are a shit-show?  You don't actually get to see the surgeon, it is all looked after by nurses and pharmacists, and sometimes the anesthesiologist, though I did not see mine yesterday. 

Overall, the visit did not provide a fantastic first impression of the hospital in which I will spend some time next week.  Maybe I have been spoiled by the excellent care I receive at Sunnybrook, or maybe I just have a bad attitude about this thyroidectomy and node dissection(S) because I hate surgery. AND because I find it truly inconvenient that I have to have parts of my precious body removed, when really I didn't ask for this in the first place! Yes, could be a slightly bad attitude, but I digress.....   

After a lengthy wait in an empty holding room (which to be fair, was nicer than Sunnybrook's pre-op hole in the wall waiting cell), I was escorted to an assessment room to have my vitals taken and my visits with various parties participating in my surgery prep. 

How my blood pressure remained lower than normal through this ordeal I do not know.  The nurse didn't even look at when introducing herself to me, and I find that inexcusable.  I cannot imagine my paperwork being so engrossing that there wasn't time for eye contact.

   

Ah well anyway, after a bunch of paper shuffling and calling of other nurses to figure out just how many vials of blood I needed to give, I was very grateful that my family physician had sent extra printouts for me to take with me in case TEGH didn't receive the faxes from Sunnybrook etc.  Turns out that was smart -yay Doc thanks so much for having my back!  Apparently there was some miscommunication from the surgeon?  Or not enough orders provided? Or..? 

Two hours later, all done, bandaid on one sore cubital fossa (now please remember I get tonnes of pokes these days and I am not fussy about it, I don't watch them do it but I don't cry or wince or bitch either, but this nurse was OUCHIE) (GRRRR), jacket on and in line at the Timmies in the lobby to get a cuppa joe for the long ride home in rush hour traffic, and I hear "hellooooo hello! Hello? Look up!" 

A voice in my head?? Is a deadly chandelier going to fall from the ceiling of this dump and end all my complaints about cancer in one quick crushing blow?  Nope. No such luck.  It was my no-eye contact vampire nurse calling from the open balcony above the lobby, asking me to please come back up - she found the paperwork and she was so glad she caught me in the lobby!  grrrrr

Two more bad pokes and five more vials of blood with two more nurses involved to confer over whether or not they had the right vial colours for my apparently fancy blood test orders (does "ionized calcium" ring a bell to anyone?) that had to be contained on ice, and another 20 minutes later I was heading back downstairs to my exasperated MotherBear who had somehow contained her obvious criticism of the situation (remember, she is a retired nurse who has many times offered to do my bloodwork for me herself! LOL). We ditched the coffee run and instead broke free for the parking lot.  Yes, we actually ran. As in, get us outta here!!!  

Overall, not a great first impression of TEGH, and I said as much to my surgeon's assistant this morning.  She apologised for the inconveniences and assured me she needed to know how things went so she can monitor their dealings with other hospitals at which her boss works.  She said that I should in no way doubt my surgeon, that despite the bad first impression of the hospital, she is completely confident that I will be well taken care of next Wednesday when directly in my surgeon's hands.  oh dear.  I hope so!!  yikes.

One of the highlights of the excitement yesterday, and the reason for my hasty call to the surgeon's office this morning, was that the nurses blithely stated that I should plan on a three day stay in the hospital - THREE DAYS IN ADDITION TO SURGERY DAY.  WHAT?? I asked several times if she was sure, if that is common, if she was sure, as the surgeon told me himself that as long as everything goes okay I will be released the next day.  

She said yes plan for three days and I asked repeatedly how I could find out for sure as this would be crucial information to know as I have a young family and we live three hours away!?  She said she didn't know but was pretty sure - I suggested that having a backup plan in case of emergency something goes wrong is far different from PLANNING for a three day stay.  Aaaarrrghhhhh 

Long story short, this morning my surgeons office confirmed that I need only plan for one nights stay, unless there should be an emergency.  They used to keep people in intensive care for three days after a thyroidectomy, due to necessary monitoring of calcium levels, but not anymore.  So... as it stands, I am expecting to come home Thursday Dec. 4.  

Lots of shuffling has happened since I got the surgery date, but we are now one week out and I think it is all organised.  Scott will be taking me to my operation, we will be in Toronto Tues. Dec. 2 through Thurs, Dec 4, and my Mom is coming to stay with the girls and taxi them to and from school, ankle x-rays, and play performances etc.  Then Scott leaves for work likely on the Friday, Mom will stay until Sunday, and Grandma Iris is coming first of the following week to help taxi and look after the girls while I rest and recuperate for a few more days.  Yes, I do expect to get some much-needed rest in my cozy master suite LOL - can I start now??  ;-) 

No confirmation of post-operative assessment date, but looks like it will be one week after surgery, on or about Dec. 11, 2014.  

In any case, I suppose I am grateful that the pre-op is over with and an accomplishment to add to my cancerous list, but I am grateful that my post-op care will continue at Sunnybrook and the whole thing will be behind me about a week from now.  I will be tired I am told, and I will have to start taking a supplement to replace my natural thyroid function, and I will have to start taking a calcium supplement, but otherwise everything is rolling along as it should. 

I am just about to the point where there is nothing else I can do to prepare for this thing, so I have to let it all go and just roll with it.  I lost control of this bus ages ago!!

I'm not supposed to look this stuff up, but if you want to know more about my diagnosis of Papillary Thyroid Cancer, this is where I would maybe start looking. Here too.  :-)  Oh and Canadian site here: http://www.thyroidcancercanada.org/

Thyroid Hormone Replacement and Papillary Thyroid Cancer?

Regardless of whether a patient has just one thyroid lobe and the isthmus removed, or the entire thyroid gland removed, most experts agree they should be placed on thyroid hormone replacement for the rest of their lives. This replaces the hormone in those who have no thyroid left, and to suppress further growth of the gland in those with some tissue left in the neck.

There is good evidence that papillary carcinoma responds to TSH secreted by the pituitary, therefore, exogenous thyroid hormone is given, which results in decreased TSH levels and a lower impetus for any remaining cancer cells to grow. Recurrence and mortality rates have been shown to be lower in patients receiving suppression.

Thyroid surgery date

So.. three weeks from now I will be without my thyroid gland and all the lymph nodes in my throat and right side of neck. Ew gross, I guess that sounded a bit graphic. Blech  Surgery grosses me out SO much!!

I finally got the date confirmed yesterday, my next surgery will be Wed. Dec. 3, 2014.  Complete thyroidectomy, central node dissection, and right node dissection. Hey did I mention I don't want to do this? I can say I have had a "node dissection" before and it's not friggin pleasant. 

Oh and did I mention that that week is crappy timing??  Claire and Cassie are in their "Kids in the Meaford Hall" Christmas 2014 production of "The Lion, the Witch, and the Wardrobe" for which they auditioned in September and have been furiously practicing twice weekly. *sigh*  Yes, I know, I can watch the dvd.  But this is Cassie's first play, Claire's second, and they both have stage roles with lines for the first time.  :-(  Not to mention the sheer number of performances (2 Thurs, 3 Fri, and Final show plus cast party Sat, THEN Meaford Santa Claus parade Sat. evening, in which the girls will be on the Bill's valu-mart float) and all the dress rehearsals and people-shuffling that will be going on from our house that week, Dec. 2-6 will be a total write-off.  Someone - Please sedate me!!

If you have kept reading through my whinyness again so far today, I will continue with a few quick details. LOL Thanks for listening.  :-) 

The surgery will be at Toronto East General Hospital. Yep.. why not throw us another curveball - I'm someday going to accept that I am just like one of the Super Mario Brothers: constantly jumping and diving obstacles. On fire.

I asked if I should be concerned that my surgery won't be at Sunnybrook and my new best friend at Dr. Higgins' office assured me that no, this happens all the time, and I should only be concerned if I was to not have Dr. Higgins. OK. So pre-op admission appointment and surgery date will be at Toronto East General, and post-surgery appointment will be back at Sunnybrook. 

My lovely and loving Mommy :-) will be taking me to surgery again and putting up with my sorry ass seeing purple tarantulas in the recovery room, and will assist me home upon discharge which should be the following morning Thurs. Dec. 4.  As for the situation at home I am still working on that, thank you for all the offers to come stay with the girls, we will work it out ASAP.

Pre-surgery date is Tues. Nov. 25, and it's looking like post-op will be Dec. 11 but that is not yet confirmed. (hey... why not wait til the last minute?)  I do currently have my Week 18 clinical trial check-in appointment for Dec. 8 but that will have to be moved, as will my Dec. 9th 6-month follow up with my first surgeon for the "right groin node dissection" surgery I had in May. hehe How many more times can I say "dissection" today?  YUCK.  Don't even ask me how to pronounce that - I think it's something like what I used to do to frogs and earthworms and cow eyeballs in high school biology.

OK enough bitching for now... have a great weekend everybody.  Thanks again for your xo's and support.