On the Line

Ever see the movie version of Mamma Mia? I am borrowing a line from the movie: I occasionally torture my almost-teenagers with jumbled techno-terms such as this version of the word "ONLINE" - when I say "On the Line" referring to the INTERNET *gasps from the girls*  they groan and correct me - it's ONLINE Mom!!  hahahaha  Yes, I know that, I was ONLINE before YOU were born!  All of my other accidental gaps from Chemo Brain they seem to forgive (or at least overlook), but if I want to get a rise out of them I use that one on purpose.  

During research for my little guest blog post I showed off the other day, and since that was posted, I have met even more people online either via email or blogs or websites or facebook, etc.  I have found more friends battling melanoma, and I have had several moments of "wow! You took the words right out of my mouth!"  I want to jump up and say me too me too!  It is interesting, and a relief.  It is that unique sense of community that I take comfort from.

I am truly grateful for the good news and writing distraction this week, the timing couldn't be better, as I am having a low bunch of days.  I find myself cranky and explosive and exhausted. My family concurs. :-(  

I think it is because of the lingering effects of the thyroid cancer treatment complications plus the side-effects of the pacmen, but also because I am dreading my trip to Toronto next week.  

Another couple of days away from home, for ipi treatment #6 and CT scan #5, plus get results from Nuclear Med body scan with Endocrinologist.  It will be a busy couple of days, and I am being a whiny baby stomping my feet - I don't want to do it!  I am sick of doing this stuff, I want my "old normal" back!  I am tired of my life being on the line.

Anyway... 

I thought I would share some of my online findings with you, if you wish to verify any of my information, or if you just wish to get someone else's perspective on what I'm talking about:

A Melanoma Journey - experience remarkably similar to mine (Canadian)

Hotel Melanoma - cool expression of experiences through song lyrics - I wanna be sedated too! (U.S.) This blog caught my attention when I read the description in the header: "The "Hotel Melanoma" moniker is a metaphor for living with my particular brand of cancer. Except for those lucky few of us deemed "cured", all we cancer survivors are guests of one of the many, many branded hotels in the "Hotel Carcinoma" chain. We can check out any time we like, but we can never leave. Meanwhile, let's be livin' it up; and please support cancer education, prevention, and treatment research."  

Huffington Post Generation WHY - lots of funny and oh-so-true blogs such as this one: Cancer Has Made Me Socially Awkward

Dear Melanoma - Australian, perspective on such things as Life After Cancer 

Very true and real issues faced by stage 3/4 melanoma patients!

And, the actual article Emma from Dear Melanoma discusses: Lost in Transition After Cancer

Article: Melanoma Caught Me by Surprise - Don't Let it Happen to You, by Summer Sanders (Shared on FB by Save Your Skin Foundation)

Thank you to all of you who are willing to share your experiences online, and Thank you to all of you who support and encourage us in our journeys, online and on the line.  

Me, Guest Blogger! Save Your Skin Foundation

Recently I was honoured by the request to write a guest blog piece for the Save Your Skin Foundation based in BC (and Quebec).  I am very excited to share that I finally wrote it, and they posted it! 

Please see it here:
One Melanoma Patient's Need for Community

AND - In French! Here: Quand un Patient Atteint de Mélanome Recherche le Soutien de ses Pairs

(confession - I did NOT write it in French, the Save Your Skin Foundation experts did)

The Sun, co-written by: Claire

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

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

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

metastasis [muh-tas-tuh-sis]
noun, plural metastases [muh-tas-tuh-seez]
1. Pathology.  the transference of disease-producing organisms or of malignant or cancerous cells to other parts of the body by way of the blood or lymphatic vessels or membranous surfaces.

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

  (Cass says I was an ugly baby!?)

A new friend in my support group asked me point blank if I have yet to forgive myself for that?  I couldn't answer... I think I have not, but my personal jury is still out on whether or not I need to forgive myself for it.  

In any case, I wanted to share with you Claire's speech for her public speaking assignment in grade seven this year.  She wrote about the Sun.  

The French Immersion support group Canadian Parents for French (CPF) holds an annual contest for the best French public speaking: Concours.  In grade five both Claire and Cassie won at their school level, and competed at the Board level one March 2013 evening in Chesley.  

Claire won second place that year, and after the first place winner could not go, Claire stepped in when invited to say her speech at Glendon College, York University, in Toronto.  We three girls went and made a weekend out of it, rented a dorm room at the university and everything, it was fun!  Claire won prizes and accolades and she got the itch for the performing arts. 

 

Last year their class was not given the opportunity to do speeches in time for the competition, but this year they did... and poof!  Again, Claire won their grade level and went on to compete in Chesley.  She placed second again - congratulations Claire!! (and we may or may not be secretly hoping that she will be called to Toronto again in May). ;-) 

I didn't get a chance to mention this before, because I was ill after my treatment and behind in blogging, but yes yahoo great job Sweetie!  I was not able to attend her speech performance in Chesley, as I was just returning from Sunnybrook that evening and had to remain in isolation.  But Cass, their Dad, and their grandparents went, and Dad video'd it for me and shared it on Dropbox. Yay technology, and yay Dad, thank you.  

Claire did an amazing job, what a trooper.  It was a heartbreak for us when she came home with the winning announcement and I had to break it to her that the Chesley night was the same as my Toronto night.  But she did it anyway, and smashed it.  :-)

Missing that performance compounded the guilt I have been feeling for missing so much over the past year.  I missed the girls' 12th birthday party (which I always host, much to the chagrin of the neighbourhood LOL) because I was two weeks post-op and couldn't move.  That was a terrible weekend, though my out of town friends Sonya and then Crystal swooped in for visits and rescued me from imminent depression and brought me food and thoughtful gifts, I missed the girls so much it physically hurt, moreso than my elevated leg and percoset-hazed headaches.

We got over that of course, in part due to my friends, Mom, family, and the girls' graceful nature, and proceeded with a summer of hit-and-miss-me attending traditional outings: I missed Claire's piano recital, but I was able to not-very-gracefully attend Cassie's guitar recital.  We were able to make Canada Day fireworks at the beach but Cassie had to lug my anti-gravity chair through the sand for me.  And back to school shopping happened, but in short bursts and then with me throwing a hissy fit that I had to sit down in the mall.  Frustrating!

Then came December, and my thyroid surgery.  And wouldn't you know it?  Damned surgery date was the day before Cass and Claire's opening performance of Narnia with Kids in the Meaford Hall.  I cried endlessly over that one, they had been practicing all Autumn, and now I was going to miss it.  Again, between Scott taking me to Toronto and staying there with me, and my Mom and the girls' Dad doing the home stuff, we got the girls fed, watered, rested, and taxi'd to and from every performance. I finally got to see the dvd of the performance last weekend, it was awesome of course.  

Then Chesley March 25 2015, and I missed it.  Next week Claire has her piano class/competition in the Kiwanis Festival in Owen Sound, and we have been advised it is Monday April 13.  Seriously!?!  That is my follow-up with the Endocrinologist.  Aaarghhh  I refuse to miss it.  I postponed my appointment, and will now see the Endocrinologist the same morning as my next CT scan at Sunnybrook, Tuesday April 21, 2015.  So what if I have to drink the pre-CT radioactive stuff while chatting with the thyroid Dr.?  I don't care how little sleep I get that day, I am not missing Claire's Kiwanis next week!  

Anyway... I did promise a speech didn't I...?   Here it is, Claire's grade seven speech about the sun, even I learned a couple of things from it!  

Please keep in mind that it has been translated from French to English, so it may seem a bit bumpy in a couple of places, but the smoothness just didn't quite survive the translation.  Also imagine her saying the numbers in this speech LOL if you know French at all you know that the key to success of any public speaking feat such as those numbers is to print them out in word form on the cue cards for practice when memorizing!

I hope you enjoy:

Le Soleil - The Sun     by Claire Richardson

What is in the center of our solar system, and in the center of our lives?  Greetings...ladies, gentleman, dear teachers, parents, and friends, today I will be talking about the sun.

As a warmup, I will be talking about the science of the sun, and how it affects your mind and the body.  Sadly, there are some negatives also. 

The distance of the sun to the earth 149 600 000 kilometres - that is 402 150 trips from Meaford to Toronto and back!  The earth is an oval, so the sun is closer to the earth more times than others.  Its closest July 4th, and it is farthest January 3rd.  The temperature in the middle of the sun is 27 472 540 degrees Fahrenheit.  It is HOT!

That brings us to what the sun does for our bodies.  When I think of the sun, the first thing I think of is vitamin D.  When the sun shines in the window, it does not give us vitamin D, as the sun in winter does not either, the rays are not strong enough, it is too cold.  But when we absorb the sun's rays directly, UVB energy converts to a form of cholesterol in vitamin D3 that travels to the liver and kidneys, where it meets with oxygen to become active.  The vitamin D from the rays helps our bodies to absorb calcium for strong bones, muscles, and a good immune system. 

The rays of the sun are white, which means that they are mixture of all of the colours in the rainbow, but when they pass the atmosphere, gases, dust, crystals of ice and little balls of water divide the rays into different colours, bouncing some toward toward our eyes and absorbing others.  The colours we see depend on which colours are reflected and absorbed. 

The sky is clear because the gases in the air reflects a lot of the blue light of the sun, the sky turns pale when extra dust or humidity reflects other colours. Sunsets are yellow-red if the air is dusty, because the rays of the sun have to travel farther in the atmosphere where only yellow and red are absorbed. 

The atmosphere of the earth blocks 88.7 per cent of the UV radiation of the sun that penetrates the atmosphere.  The 12.3 per cent of rays that travel have positive and negative effects.

Some positive effects include it helps some skin conditions.  UV is used in the treatment of the skin condition psoriasis, that is a condition when the skin loses cells too fast and develops itchy scaly patches.  Exposure to UV stops the growth of the skin cells and relieves the symptoms.  

It helps your mood because the sun stimulates the pineal gland in your brain, which produces a certain chemical named tryptomine.  That chemical improves mood.

The negatives... it is one cause of cancer.  UV is a human environmental carcinogen.  It is the most prominent and universal cause of cancer in our community.  There is strong evidence that the three types of skin cancer, basal cell carcinoma, squamous cell carcinoma, and melanoma, are caused by exposure to the sun. 

More than 90% of skin cancers come from UV rays.  Sun also causes skin burns.  UV burns the skin - a sunburn is a burn that happens when your cells are damaged, your cells are damaged by the absorption of UV rays.  Extra blood goes to the damaged skin to repair it, which is why our skin turns red when we have  a sunburn.

A lot of exposure to UV rays is dangerous to your immune system, because sunburns can change the distribution and function of white blood cells.  It ages your skin: UV accelerates the aging of your skin, causing wrinkles, brown spots, and loss of elasticity in your skin. 

The sun can do good things, the sun can do bad things.... Either way, the sun is in the centre of our solar system, and in the centre of our lives.

By: Claire Richardson         

 

<----- My Mom and Moi,        

Port Stanley, ON,  

197---something?    :-)

Article & Photos © Natalie Richardson 2015                         

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

Life After Thyroid Cancer

Yes, I am calling it.  I have decided to consider myself DONE with thyroid cancer.  Since diagnosis in September, surgery in December, and now the radioactive iodine treatment in March, there is nothing left to do but adjust to life without a thyroid and focus on beating melanoma.  

As long as it doesn't come back within a year, I am considered a thyroid cancer Survivor.  Whoa big word... the first time that word has appeared on this blog.  

I am so sick of typing the words RADIOACTIVE IODINE TREATMENT and ENDOCRINOLOGIST - those call for writers' cramp all on their own!?!  Let's go with SURVIVOR.  

Technically I do not have the go-ahead to say that but who cares, this is my life, and I am going to do what I want, um.... like always.  LOL My support group friends might get a small chuckle out of that, as the "baby" of the group I was identified as "still having issues with the loss of control" in my life (that cancer provides), I am told a few more years of the cancer journey will knock the control issues right out of me.  

As I sat in my lead room (should have been padded room?) I willed the vile stuff in the capsule to chase down and destroy every remaining thyroid cancer cell in my body, and I did that with an inner strength I have not summoned with that kind of ferocity in a while.  So I am sure I nailed it - I have shit to do here people, no time for thyroid cancer!  

Just before I left, I wrote a private letter to my thyroid cancer, bidding it goodbye.  I thanked it for its part in my "journey," I read it out loud in that hateful room, and I folded up the letter and left it there in the garbage with my radioactive recycling. 

I have thrown out my radioactive toothbrush and done all of my separate isolation laundry and dishes: Good Bye Thyroid Cancer, it is Over between us!

So now I can go back to my fight with melanoma.  I am somehow still hanging on to my clinical trial, pending good results on my bloodwork on the 20th when I go.  

I see the endocrinologist next week, to check in on everything and get the results of my nuclear medicine full body scan.  Oh yes, I had that last week - coolest scan I have ever had by the way.  

So easy... no needles, no drinks: just lie still for an hour on a padded table with arm rests and a pillow under my knees, and the scanner thing quietly hovers above.  Speakin' my language!! I had a nap.  True story - I came out of the scan and stumbled into the waiting room to Scott and he was like "geez Nat, you might wanta fix your hair a bit, you look like you just woke up!"  hehe  I did.  :-)

Also notable: I am back on my thyroid hormone replacement medication yahoo!  For six weeks I take double the meds, then back onto the just one pill per day for the rest of my life.  I have even gotten into a good habit of waking up early to ever so briefly take the pill and go back to sleep so that I can have my beloved coffee IMMEDIATELY upon waking.  I don't even bitch about it anymore, I am so grateful to have it back.  

As for the other post-treatment symptoms I am experiencing, namely the swelling and exhaustion, my family physician suggests that it should all get back to normal soon, and if it persists longer than a month we will investigate further.  In the meantime I am trying to "be gentle with myself," drink plenty of water, rest as much as possible, not be pissy about having to cut the straps off my favourite Mary-Jane shoes, and look forward to being back on my feet, puffiness and concussion-symptoms FREE.  

A few more photos from my farewell to thyroid cancer...

The beautiful flowers my friend Rhonda sent me (that were not permitted in the area of the hospital I was staying in and caused Rhonda and the florist some grief going to the trouble of RE-delivering them to me on Wednesday while I was waiting for my ride home).  Thank you my friend, they were gorgeous:
 

The couple shots of tequila that I did end up having after all on my second night in isolation - thanks Jenn for the phone call date and partnership in cinnamon-booze drinking to help solve life's problems!  ;-) 

And last but certainly not least, the people who inspire me most, to call the shots on this one and fight fight fight:

Article & Photos © Natalie Richardson 2015

Radioactive Iodine Treatment, Part 3

Almost two weeks have passed since my I-131 Radioactive Iodine Treatment, I am out of "quarantine," and I am beginning to feel moderately human again.  This part of my cancer treatment did not go as smoothly as anticipated, but... I am starting to feel like I am recovering and may someday feel more like myself again.  

A combination of factors may or may not have contributed to the crappier than typical outcome of the relatively simple/common radioactive iodine procedure: the fact that I have been under treatment for melanoma since August and dealing with the side-effects of that drug already, the concussion a week prior to treatment, my body's reaction to the treatment itself, after it's reaction to the LID and forced hypothyroidism for two weeks prior... recipe for disaster, in my experience.  

The radioactive pill I swallowed on March 23 did not make me nauseated or sick, but wow it had other effects.  Dry mouth, exhaustion, swollen face/neck/salivary glands, hot flashes, terrible nightmares, tummy trouble, mouth sores, exhaustion, all in addition to the hypothyroid symptoms I was already dealing with: exhaustion, chills, irritability, dry skin, low blood pressure, no appetite but lovely weight gain, tummy trouble, oh did I mention exhaustion?   

I have been mainly resting and drinking plenty of water, but I am still puffy and swollen and feel like a blob.  My right foot was so swollen the other day I broke the strap off my favourite shoe - dummy me I wasn't looking down when I jammed my foot in in a hurry like Drizella! Ouch!

I bet my quiet and ever-so-patient boyfriend was SO happy his work/load was cancelled last week and he got to (had to) spend two weeks looking after Queen WhinyPants and the three Busy Princesses?!

In any case, I am getting back in the game, have a bunch of writing I want to do, and have a week of relative quiet before two weeks of Toronto trips and my next Pacman treatment and CT scan. 

I want to share some photos from my two-night visit to Hotel Isolation, it was an interesting experience to say the least!

Scott and the girls took me to Sunnybrook early March 23 morning, and waited with me while I was registered in the Nuclear Medicine Department, in the basement tunnel between Odette Cancer Centre and the MRI/CT area of Sunnybrook, with which I am very familiar.  

I met with the Nuclear Medicine Physician and signed more consent forms after receiving the power point presentation explaining that I may not become pregnant for at least a year (yah, not too worried about that one!) and that I may not cuddle even my CAT for a week upon returning home.  (For the record, I believe I was correct about my personality assessment of the Nuclear Medicine Physician...just saying!) ;-)

I was instructed to go to my room in the C wing, on the 2nd floor, and off I went with my suitcase and cooler bag full of tasty beverages from home.  I settled in to my room, complete with my quilt and kidlets' pillow for comfort, plugged in notebook, set out the books I never did read, and took some pics. 

 

 

The Nuclear Medicine Technician came in, with her cart, and another consent form/contract that I signed verifying that I would not go within four metres of any other human for two days, and not within one metre for one week after returning home.  I started to get a bit nervous.  

The technician taped disposable mats all over the floor beside my bed, instructing me to not touch the floor barefoot please.  She also taped mats all around the bathroom so as to make cleaning up after me easier in case there was to be any microscopic splashing of any radioactive fluids.  I was instructed to flush the toilet three times every time I went, and to use my own towel and face cloth, not the paper towels.  

 

<----------- THE CART

 

My cool new flip flops - so glad I grabbed them at the last minute 

- my slippers were too hot! ------>

She also explained that I had to keep my rolling hospital table directly beside the door (which would remain closed for the duration of my stay), so that the nurses or dietary staff could easily drop my meal trays off without coming into the room. 

I had to cut all of my food into small pieces to that my mouth didn't touch anything I didn't eat ie. cut up an apple, do not bite it to the core, and I had to flush down the toilet anything I did not eat.  I had to use only one set of cutlery, put the subsequently delivered ones to the side, and wash all plates and cups etc, keep trays neatly stacked in the corner of the bathroom as the nurses would not be coming back to pick them up after every meal.  

I was starting to mildly freak out.

I looked at the big windows, nope, they do not open... aarghhhhh  the pre-conceived simplicity of this operation was quickly draining out of the sink I was told not to splash in when I was brushing my teeth.  Even my saliva was going to be a dangerous weapon after this treatment!?!  I am not claustrophobic, but I was considering becoming so with every new instruction the Technician gave me.  

Finally she handed me two large styrofoam cups, and told me to drink out of these only for the next two days.  I glanced at my cool pink "I'll have a Cafe Mocha Vodka Valium Latte To Go Please" cup and she said nope - pour everything I will be drinking into one of the two styrofoam cups and leave them on the collection of used food trays at the end of the two days.  Waaaahhhhhhhh!!!!  Nothing that belonged to the hospital could touch my lips or skin, and she would be scanning the lead-lined room upon my departure before cleaning it for the next person.  

Two people per week receive this treatment in the room I was in, one Mon-Wed, and the second Wed afternoon-Friday.  

The radioactive iodine pill contains 125 Ci (Curies - the amount of radiation being given off, or emitted, by a radioactive material is measured using the conventional unit curie (Ci), named for the famed scientist Marie Curie, or the SI unit becquerel (Bq), ~ source)

I would be "scanned" again in 24 hours to see how much my level had gone down from 125, and by Wednesday I needed to have excreted enough radiation to be at or below the number 30.  This is where the beverages come in.

And she led me to THE CART.  In the top there is a grey box.  It is made of lead.  It is marked with the famous Radioactive Hazard sign, which matched the one the Technician taped to the outside of the door of to my room before she closed it. 

She opened the lead box, and reached in, and opened another, smaller, lead compartment inside the box.  She then indicated to me the small round lead circular box inside that one and told me I would open that and take out the clear plastic pill bottle with no lid inside, the capsule was inside there.  I could not touch the capsule itself, but had to tip the bottle to my lips and drink it down with a full glass of styrofoam cup water, while she watched.  

She then backed up four metres.

And I took the pill as instructed.  Down the hatch!

I then had to set down the container and back up from her, and stand in a spot with my back to the wall.  She marked a set space on the floor with a piece of tape and scanned me with this radar-gun looking thing:

I measured 125!  Holy wow...it was in.  I didn't feel any different.  But I was hell-bent on sending all 125 Curies after my thyroid cancer cells to zap them and send them toward the flusher.  

With that the Technician left, told me happy drinking!  She said I should pee at least every hour, as I should be flushing as much and as quickly as possible, as the risk of future cancer lies in the radioactive cells being in my body... the longer they are stored there, the greater the risk.  From salivary glands to skin cells to bladder and tummy stuff, empty them all as much as possible.

Each meal tray came with several lemon wedges as I was to use the lemon to stimulate my salivary glands several times between meals in order to keep them from getting a buildup.  But I couldn't just suck the lemon, I had to squeeze it into my styrofoam cup and them flush the peel.  *sigh*  Tequila anyone??

 

<----- BLECH!!! Boiled white mystery meat, and does that REALLY pass for rice? Not for this sushi-lovin' Momma.... the only thing edible on there is the lemon wedge. 

The silence set in.  Bizarre to be in a hospital room with the door closed and no nurses coming in to take vitals every five seconds.  No IV machine beeping, no one else in the room, just the odd page over the phone speaker for the floor staff.  If I had a problem I was to call the nurses station extension, otherwise they would phone me at every shift change to introduce themselves (and make sure I was still alive), but I would never see their faces.   

My Endocrinologist popped his head in both days to say hello and check to be sure I was okay.  But he stayed by the door LOL.

After night one of the worst and most realistic nightmares of my life, and a bunch of jokes on facebook and cell phone calls to home, I finally broke down and ordered TV.  To Hell with the stupid silence spa retreat bullshit I had planned for myself - I was starting to go nuts in there.  

How come I love my alone time so much and absolutely relish entire weekends of solitary hibernation in my basement Master Suite but can't handle 48 hours of peace and quiet with no chores to do in a stupid little hospital room?  I plead insanity.  

It was terrible.  I didn't expect it to be as hard as it was... between the awful excuse for food they sent in and the creepy empty windows all fishbowl into my sealed shut windows, barely any wifi, and an exhausted body afraid of falling asleep for the nightmares, I suggested to the Technician at the end of it that perhaps they could consider cleansing the room with burning sage (Smudging) between patients?   She looked at me funny.  

In any case, it's done, and I'm here to write the longest post ever, being WHINY.  :-)  My superwoman friend (with an extra car to be able to rest the gamma-ray-contaminated one for a few days afterward) picked me up Wednesday afternoon on her way home from work in the city, and we chatted and guzzled Timmies coffee all the way back to Meaford.  Well, I guzzled, she remained Ladylike.  

I had also chowed down on my first breakfast (AND second breakfast!) already - upon discharge at the hospital I bee-lined straight for the familiar cafe at the Cancer Centre for a toasted bagel with extra cream cheese and BACON.  BUH-BYE stupid low iodine diet!!!!  

Awesome.. all the better to absorb my doubled up thyroid hormone replacement medication with! I had eggs too, a beautiful scrambled egg wrap with cheese and avocado and tomato.... it was sheer heaven.  

I kept looking around and sniffing - me, my suitcase and I were happy to be in fresh air eating real food, with real people all around.  It was the best wait in that Centre I have ever had!! And if anyone sat down near me I just casually got up and walked away... no biggie, I can be responsible with my radioactivity.  

Going to have to save the rest of the stories for another post... this must be getting just too damn long.  Phew it's good to be back on here though - I won't leave it so long next time! 

Article & Photos © Natalie Richardson 2015