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