Showing posts with label I-131 Radioactive Iodine Treatment. Show all posts
Showing posts with label I-131 Radioactive Iodine Treatment. Show all posts

Friday, January 12, 2024

A Year to Review

As I prepare to spend the next year writing a book and pursuing a career as a freelancer and advocate in the oncology space, I have been reviewing the multitude of resources collected in my cancer travels over the last nine-plus years. I am inspired to share the knowledge I have gained through my work, but also to re-visit it with the additional perspective I have developed since first being diagnosed with advanced cancer. 


Some resources I'll mention in the coming months you will have heard me touch on before, some might be familiar only to those who follow Save Your Skin Foundation (where I wrote about them but didn't share on my personal blog), and others will be completely new to all of us. I will be expanding on my experiences with these items, and in some cases, I expect my extended thoughts on the topic will reveal some new context. 

January is as great a time as any to kick off a new plan - I'll start with a plug for those who enjoy setting new years resolutions. An easy one for the year is to perform a monthly skin self-exam to stay on top of any changing skin spots, moles, or conditions. Our skin is our body's largest organ, and we need to check it to protect it. Set a reminder in your calendar, google, or Alexa, and/or align your skin check with the full moon every month - easy peasy!  (Just saying... if I hadn't neglected my weird mole all those years ago, I wouldn't now be sitting here talking about metastatic cancer.)


Also in January, it is Children Impacted by a Parent’s Cancer Month (CIBAPC), in the United States.

I have set a plan for my blogging to align with a calendar of cancer awareness days for 2024. As you know, through my work I have inadvertently become an "unofficial expert" on melanoma and non-melanoma skin cancers, as well as ocular (or uveal) melanoma. Also having had a simultaneous diagnosis of thyroid cancer, and becoming extensively familiar with the treatments for all of these, as well as related conditions and topics such as lymphedema, gene testing, and treatment side effects, I will share news and insights on each of the ones I feel equipped to speak about.

You may have already noticed I added an image with a link in my blog sidebar to the right showing the I Had Cancer calendar for 2024. This calendar is the most comprehensive of its kind, that I've seen. I Had Cancer is an online patient support community I have been a part of for many years, wrote a blog for them once upon a time too. I'm inspired to share their excellent resources and to be able to do so on a wider array of cancer indications and related topics. 

My journey with melanoma skin cancer has many similarities to that of folks with other cancers, so I will speak to that throughout the year. 

Also, I realize that you know people other than myself who have cancer - it isn't all about me.... so you may find some interesting information and additional cancer resources such as awareness months/days and ribbon colours, and support resources for a wider community.


This calendar is free to download so if you'd like a copy you can click here to get it. I'll keep it in the sidebar this year and refer to it in upcoming posts, but also please feel free to get it and share with your family and friends. 

Why do I feel cancer or health-related awareness activities are important? For the same reason I still write about my journey almost ten years after it began: to be part of a community of support. When I was first diagnosed, I felt very isolated, filled with fear, and like no one understood what I was going through. When I started to research melanoma and found people who had survived it, I felt hopeful. They helped me, and now I can help others.

Everyone everywhere who is diagnosed with any life-changing disease or condition goes through a unique and often terrible range of emotions as they learn about their condition, their "new normal" - or wonder if there will ever be anything "normal" again. Cancer, diabetes, MS, heart disease, lung disease, Crohn's, lupus, hepatitis - too many to list. We all have something. And, pack animals that we are, we often find comfort in engaging with others who are in the same community. It is part of coping, learning, sharing, and giving back.  


Another great resource for patients and caregivers includes the National Comprehensive Cancer Network® (NCCN®) Guidelines on melanoma and non-melanoma skin cancers, and many other indications, as well as supportive topics such as immunotherapy or treatment side effects, mental wellness, and survivorship.

I wish I had had NCCN® guides for melanoma and thyroid cancers back in 2014-2015, though these have been newly developed in recent years. Through my work at SYSF I got to research and endorse many of these guides, and provide patient quotes from our community, and somehow my little face is even on the cover of the 2021 melanoma guide. That is how much I love these guides and recommend them to patients and caregivers. 

(Clicking this image will take you to the most current 
Melanoma Patient Guide from NCCN, updated in 2023)

Though these guidelines are developed with best practices in use in the United States, the resources do apply to patients and clinicians in Canada (where treatment options and access apply), as I have personally confirmed with members of the SYSF Medical Advisory Board. Canadian doctors do refer to the NCCN® clinical guidelines, and they do support the distribution of NCCN® patient guidelines to Canadian patients.

Plus - the other day when I was researching NCCN® updates I found they have published a new guide on thyroid cancer in late 2022! This is exciting, as I have never really understood the details of my thyroid cancer diagnosis. I knew I had papillary thyroid cancer, and that they were happy the tumour wasn't melanoma, so I had a complete thyroidectomy and radioactive iodine treatment. That's kind of it. Until now - I just finished reading this and I'm clearer now on more of my details. Check it out: Thyroid Cancer

Also please feel free to see other NCCN® guides related to this community, including the Survivorship books, which contain quotes from yours truly: 


NCCN Guidelines for Patients®: Melanoma

NCCN Guidelines for Patients®: Squamous Cell Skin Cancer

NCCN Guidelines for Patients®: Basal Cell Skin Cancer

NCCN Guidelines for Patients®: Immunotherapy Side Effects series:  
Immunotherapy Side Effects: CAR T-Cell Therapy and Immunotherapy Side Effects: Immune Checkpoint Inhibitors

NCCN Guidelines for Patients®: Survivorship Care for Healthy Living and Survivorship Care for Cancer-Related Late and Long-Term Effects 

NCCN Guidelines for Patients®: Distress During Cancer Care

NCCN Guidelines for Patients®: Adolescents and Young Adults with Cancer

The Patient books are easy to read, well-illustrated, and are all available for free to view and print at NCCN.org/patients or via the NCCN® Patient Guides for Cancer App: Virtual Library of NCCN Guidelines® App – Available for iPhone/iPad and Android Smartphone/Tablet.  Keep an eye out for new guides all the time, they are ever-expanding. 


So there, that is my plan for the year - laid out in January - how organized! I'm also set for a couple of my own appointments in the coming months, including my annual CT scan in March. I'm also happy to be co-supporting, with a lovely group of inspired volunteers, an accredited 'Lymphedema Education Day' to take place later this year for Physicians and allied health care professionals in the Northern Health region. Stay tuned!



Saturday, April 23, 2016

Day 577

All this talk about melanoma has almost made me feel badly about neglecting my other cancer baby: papillary thyroid cancer.  


577 days ago, a few months into my melanoma diagnosis, I was diagnosed with a second "primary" cancer, a tumor on my thyroid gland.  It appeared on my CT scans for melanoma and I was instantly referred to the head of Head & Neck Surgery at Sunnybrook, in late September, 2014.  I had surgery to remove the tumor - and my thyroid gland as well as 2 of 4 parathyroid - in December 2014.  

It was at this point in my melanoma journey I truly moved from the denial stage to a deep-seated fear.  
The painful needle biopsy of a lymph node in the base of my throat showed a metastases of cancer from a tumor (on my thyroid) to the surrounding nodes, but it confirmed that the cancer spread was that of a new type of cancer, not a melanoma.  Believe it or not, that was the good news.  

Melanoma spreads silently, appearing anywhere in the body other than its original site, but this... this was a new one.  Which made it "less dangerous" than that of a spread of melanoma.  And this is where my fear deepened.. my fear of melanoma that is.  

Here I was, with a double-whammy of cancer (which is now a source of wary fodder in our household), planning surgery and treatment of papillary thyroid cancer in between that of melanoma.  
For those of you who have been reading this blog all along, you understand why I have been so pissy.  For those of you who may be new to this blog.. please understand this is another reason why I have been so pissy! 

I thought I would re-cap the highlights of my journey through thyroid cancer, for anyone who may wish to hear more about it, or may wish to connect if they are in the same boat.  I had thyroidectomy in December 2014, I had radioactive iodine treatment in March 2015, I take Levothyroxine Sodium 200 mcg daily (one hour before coffee every morning!) for thyroid hormone replacement plus TSH (Thyroid Stimulating Hormone) suppression (due to my intermediate-risk of recurrence).   

Today's melanoma anniversary also marks the time that I would be able to become pregnant again should I so wish to do (which I do NOT); I signed a contract saying I wouldn't become preggers for a year after I-131 Radioactive iodine treatment as it would harm a baby.  I am now deemed clear of said radiation.

In any case, here is a re-cap of links from my thyroid cancer journey since September 2014:

Well... THAT happened.

Dreaming of morning coffee on a sunny day

Lymph Nodes

Radioactive Iodine Treatment, Part 1

Low Iodine Diet

Highs/Lows of my 2-week LID

Radioactive Iodine Treatment, Part 2 

Radioactive Iodine Treatment, Part 3

Life After Thyroid Cancer 

Nuclear Medicine Scan - Thyroid 



https://www.ihadcancer.com/h3-blog/09-27-2013/thyroid-cancer-a-visual-guide



PS - the 577 days was slightly more difficult to calculate than the 732-day(2 year) melanoma anniversary, so I used a little calculator site


Wednesday, April 22, 2015

Nuclear Medicine Scan - Thyroid

Yesterday I met with the Endocrinologist to get results from my post-iodine radiation treatment nuclear medicine full body scan.  

Other than finding the scan to be quite relaxing and restful - no needle pokes or yucky potions to drink - I did not really know why I was having this scan other than to do as I'm told and follow the treatment instructions as advised.  Usually I dig into things more ahead of time, but I was so tired of researching thyroid stuff I just put my trust in the care of my Endocrine System Physician and showed up on time.

I figured we would be measuring any remaining radioactive cells left after one week post-iodine treatment.  Yesterday it was explained in full:  yes indeed we were checking to see how many glowing bad guys were left, and where they might be.  

See, thyroid cells left behind (cancerous or not) after surgery can still travel throughout the body, settling elsewhere and causing another carcinoma.  The point of the radioactive iodine as I mentioned prior, was to zap those thyroid cells with radiation-flavoured iodine treats and destroy them.

Good news and mostly good news: good news is that there was no evidence that any thyroid cells had traveled to other parts of my body.  Yahoo - that means they didn't float around either post-surgery or post-treatment and settle somewhere else to cause more cancer. 

The mostly good news is that the radioactive thyroid cells left behind (these continue to fade/decay as time goes on), did remain all around my ex-thyroid area. Throat, neck, clavicle.  

The amount I have left in there sit on a scale at "intermediate" level risk of recurrence of papillary thyroid cancer.  We are relatively comfortable with that. With the high rate of lymph node infection we already knew I wasn't yet out of the woods on the "easy cancer," but intermediate we can handle.


 


<--- Nice neck, no stupid scar, just sayin!









Follow up will be with ultrasounds on the thyroid area every six months at Sunnybrook.  I can technically call myself thyroid cancer free after one year without recurrence.

I still take the thyroid hormone replacement for life, dosage to be monitored by my family doctor, with whom I will be visiting tomorrow. 

I can also back off the calcium and prescription-vitamin D (Calcitrol/Rocaltrol) that I have been taking since thyroidectomy.  Should I have any symptoms of low calcium ie. numbness or tingling in the lips or face, or tingling or cramping in my fingers, then I need to hop back on that calcium and see my family doc immediately.  




Otherwise, that's it for the thyroid stuff and the nuclear medicine scan.  

Yesterday after my CT scan when the nurses reminded me to drink lots of fluids for a couple of days, I laughed out loud, thinking "ha ha honey - that teensy bit of contrast dye is NOTHING compared to the walking talking radiaoactive hazard I was almost a month ago!"  LOL anyway... I am now home, resting, drinking tea and waiting for my next CT scan results.

Monday, April 6, 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:


http://365daysofthankyou.com/2014/01/27/be-a-good-girl-and-do-what-the-doctor-says/


Article & Photos © Natalie Richardson 2015

Sunday, April 5, 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



Tuesday, March 24, 2015

Almost outta here... Radioactive Iodine Treatment, Part 2

I have been feeling too tired/crappy to write or even read while here at Sunnybrook for my radioactive iodine treatment, which I received yesterday afternoon.  Overall everything is okay though - no remarkable problems or complaints, just starting to go nuts and can't wait to get out of here!
I have a heap of funny stories to share, but in the meantime I just wanted to touch base with anybody who hasn't witnessed my going bonkers on facebook today LOL! I have taken some interesting photos and notes also, I really can't believe that we don't hear more about this treatment method, given how common I am told it is?
It has been one of the most bizarre experiences of my life and I am grateful to have had it, but I am also glad it is almost over with!
Most notably, I will state for the record that I should not have complained about my LID at home - I have had such terrible food here that I would give anything for my own bland but FRESH salad back right now! Thankfully being so hypothyroid keeps one borderline comatose (haha) therefore without much appetite.
I will post more once I'm safely in isolation and resting at home, but in the meantime thank you for your good vibes! I passed my radioactivity meter reading this aft and have decreased my number from 125 to 50, right on target for goal of 30 for discharge at lunchtime tomorrow.  Spending the rest of the night drinking the rest of the fluids I brought with me!
Also I get to take my thyroid hormone replacement medications - times double! - beginning in T minus 12 hours YAHOOOOOOOOO!!!! and no more LID... tonights serving of boiled white mystery meat and rice was the last!
Okay back to flushing radioactive waste and driving my family nuts with phone calls.  :-)
PS - I managed to get photos of what is INSIDE this box:  

Saturday, March 21, 2015

Highs/Lows of my 2-week LID

Almost done - LID (Low Iodine Diet) ends Monday once I am at the hospital for my treatment. WOOT WOOT  This has been hellish.  As usual in my life, I take one step forward then two steps back!? 

Hypothyroidism is BAD.  Please do not try this at home. Consult your physician before attempting this treatment of your body.  Side-effects include but are not limited to dizzyness, nausea, chills, fatigue, headache, irritability, low blood pressure, anxiety, tummy troubles, restlessness, exhaustion, confusion, frustration, apathy, lethargy, food flavour deprivation, complete and utter insanity.  

I have not even felt up to writing *gasp* - but I see the light at the end of the tunnel.  Tomorrow is the last day, on Monday I will still be LID but it is also treatment day so I will be distracted by the bizarre situation I imagine will be at the Sunnybrook Nuclear Medicine Department.  Adventure always distracts me.  So one more sleep in this hypothyroid hole alone and then on our way to rid body of thyroid cancer - buh bye!!

I have kept a few notes to share with you as to how the last two weeks-ish have gone.  I'll break it down into good news and bad news, which to tell first?  

Bad news, the Lows:
  • terrible food. Sucks. Even though I am a decent cook at alternative diets, this one is terrible. Who the heck would ever bother eating an egg without the yolk, except for in angel food cake perhaps?
<---- I did try to tuck the cherry tomatoes in there to look like yolks?  Maybe?  Fool myself?  The rest was tasty... organic rice blend, garlic potatoes, hemp seed, sauteed greens in olive oil, home-made balsamic dressing, good but bland even with cayenne








  


  • low blood pressure - ahem yes, being the over-achiever I tend to be, I was so well-behaved on my LID that I knocked my sodium level too low (which is bad), and also affected my blood pressure, which is already on the low-normal side.  Combine that with a wee hours of the morning trip to the bathroom and WHAM!  Ultimate LOW: I fainted, I fell to the floor and smashed the back of my head, giving myself a concussion and whiplash.  Thankfully we have carpet and underpad on the concrete floor, and thankfully I was not impaled in the skull by the random Barbie dolls and parts lying about where I fell. Nonetheless, I managed to get to the bathroom and laid there in shock until I was able to get myself back to bed.  Left a note for the girls in case... and kept myself awake for a bit until I dozed off amidst the thundering headache.  This happened last Sunday. In the morning I called my CCAC nurse, she advised I go to emerg, Claire and I went, Dr. did thorough bloodwork and checkup and sent me home to rest.
  • Monday saw family doc for further examination, she gently suggested I get a big roll of bubble wrap and lie still for the remainder of the week.  All joking aside, she assessed me able to drive, but very much in need of rest, and instructed me on how to slowly move around, very carefully making adjustments to standing/sitting/lying down and vice versa. She also said based on my detailed blood results that I can eat some sea salt (non-iodized) yay!
  • low self-esteem.  Who gets an EFFing concussion while battling two kinds of cancer??  Me. 
  • low body temperature. Freezing, all of the time. When hypothyroid, the body cannot control its own temperature, so after a shower or any activity, exhausting heat wave. All the rest of the time, socks sweaters blankets heating pad brrrr!
  • low moisture; dry skin, cracked lips, dehydration.
  • low energy, and on March break, great choice Mom. Thankfully I have the best family ever and we all managed to get through it and even still accomplish a couple of the things I had had planned for March break.  DID get the girls to their appointment with the therapist in Barrie, likely best timing ever.  They haven't run away from home yet... and they did all the dishes.
Okay, for the Highs... 
  • Wait one more low: record low parking fee at Sunnybrook yesterday.  Yes, that machine actually charges under $24 per shot?? There was literally zero waiting time in the main lab at Sunnybrook so we were in and out in less than half hour including walking time to the car, and I paid a one-time low-fee of $4.75. 
  • A high of the week:  I didn't commit homicide.
  • I had the most delicious fresh romaine and tomato salad with unseasoned grilled portobello mushroom and my own salad dressing for supper at our fave burger place in Barrie after the therapist visit, while my lovely and sympathetic offspring devoured their bacon peanut butter burgers and poutines directly beside me. 
  • I did not commit homicide.
  • and on the way home I found the most delicious thing!!!

The only bread permitted on the LID! Thankful to my European background (and deprived, desperate tastebuds) I find this DELICIOUS!!  Toast a piece of that puppy up with fresh avocado, tomato slices and a sprinkle of sea salt and I would sell my soul to have a bite. 

Hhhmmm...that's it for Highs. LOL  I thought there were more but... oh wait - no I didn't!  This has all been bad!!  Even wine was not a tempting distraction, stupid no thyroid = no metabolism = no appetite (except for salt) = no desire to live, even tipsy living. 

One more sleeeeep til tomorrow.... I'm going to start now.  Thanks for listening to me whine!!

Tuesday, March 10, 2015

Whoosh

...and down a hill we go!  It has been seven weeks since I met with the Endocrinologist about my post-thyroidectomy radioactive iodine treatment.  I have had seven weeks to prepare for the two-week LID preparation and then the actual treatment itself on March 23.  Not to take away from the melanoma, but I have been a bit distracted by this.  

Yesterday was day one of the LID, I had oatmeal with blackberries for breakfast (no milk), made home-made olive oil balsamic dressing for my greens salad for lunch, and a bowl of salt-free beef stew (with onion, sweet potato, and butternut squash - I nailed it) for supper.  Not bad at all, I found myself quite enthusiastic all day - even while my family had bacon and eggs breakfast for supper, I didn't mind one bit.  One tiny piece of cheddar cheese almost sabotaged my LID day, but I stopped it!

I know two weeks is short in comparison to other preparation procedures and recoveries I have had to do along this journey.  I am dreading this upcoming treatment, as I know the risks it carries with it, and I hate the disruption to my family.  But I know the payoff is my only option at this point, so I just have to dig deep and do it.  

"You'll have to dig deep for this fight Natalie" was advice I was given very early on, and boy was it correct.  We do pepper that sentiment with the odd Starsky & Hutch re-make imitation: "Do It"  ddoo-iiiT  for comic relief.  


The dread I feel for this next step is similar to the dread I felt for the other procedures I have had.  It is a bizarre feeling, going through the motions of preparing for everything almost like a vacation, but it's not one I'm wanting to go on. Must have the house clean and pantry filled and fridge stocked, pack bag, make driving arrangements, assure the kids that the trip will be worth it, be away from the kids, all while in the back of my mind I feel like a cat being lowered into a tub of water for a bath - scrambling and talons out, all fours stretched out straight with the brakes on clawing at any option for rescue.

I have had two needle biopsies.  Those are bad.  Local freezing is given but you are otherwise awake, and when they biopsy a lymph node, please know that that poor little node is far below the surface of the skin where the freezing occurred.  Terrible, bad, hateful.

And two surgeries, those are the worst.  I have mentioned before how much I hate surgery.  In the final dark moments where I know it is the last second, my fur is about to be soaked, I will be put to sleep and (hopefully) wake up, but quite seriously altered and in pain, at the mercy of uniformed strangers that may or may not properly administer my morphine: that all-consuming dread is likely what kept me from getting that mole checked earlier.  I had a feeling it was going to be disruptive to my life, dammit.

Thankfully it is not that kind of dread I am experiencing now, it is moderate, comparatively speaking.  My family is being kind and considerate about the food stuff, but honestly it hasn't bothered me yet (we're just starting day two though, I reserve the right to update you on this later on in the week LOL).  I am tired, but strangely excited.  I want this over with.  I have been waiting long enough.  
Hurry up and wait - it's the cancer routine.  Seven weeks ago I was told this would happen; while I suppose I should be happy I have lived those seven weeks, I can't help but let you know that it is constantly on my mind.  Peaceful nights' sleep? I don't even know what that is anymore.

Two weeks from right now I will be willing a powerful force to rid my body of thyroid cancer, it will be over with, and I will be able to move on, giving full attention to my pacmen again. But in the meantime I still get to anticipate and dread, that roller coaster slows down the odd time but it never fully stops.  

http://www.fiked.com/30-dare-devil-things-to-do-before-you-die/


Saturday, March 7, 2015

Drink Please!

I have amassed a collection of my favourite beverages to take for my three-day Sunnybrook stay.  They will provide iodine-free hospital-food meals of course, but the instructions say I need to bring plenty of my own beverages with me.  

The more I drink the faster the radioactive bad stuff will be flushed from my system, so after I take the iodine capsule and whatever waiting period it is, I have to just relax and drink.  What a coincidence - that's one of my favourite things to do!

Think I have enough? 

  • Bottled water (nurse at Toronto East General already confessed to me that the hospitals just use their Toronto tap water *gasp*) (LOL Toronto friends - sorry!)  ;-)
  • No-added-sugar green smoothies, containing spirulina and chlorophyll to help absorb toxins (I just have to watch that Bolthouse one has Nova Scotia dulse in it and that is a "sea food," but I will be able to have it on the Wednesday)
  • Meredith's ginger syrup mmmmmmm! I can have a straight shot or mix it in my water or tea - if you are not familiar with Meredith's beautiful product, made in Meaford, please check it out
  • Pellegrino, my favourite (Italian) sparkling water
  • Kombucha tea, detoxifying and energizing, cancer-fighting
  • ginger-lemongrass sparkling water, yes I'm taking my big suitcase with an ice pack!
and last but certainly not least...
  • a couple minis of cinnamon tequila :-)
  • and Prosecco, my favourite (Italian) bubbly!! What would three days in a peaceful silence retreat be without a wee cocktail?  I even found a baby Prosecco - I imagine they wouldn't be too impressed if I brought a magnum LOL