You’ve Come A Long Way, Baby!

Four years.  Four years.

It’s been exactly four years since I took my I-131 radioactive iodine treatment for my papillary thyroid cancer. My oh my, how my life has changed since then!

I’d like to say I haven’t given cancer another thought since that day, but truth is, I think about it every day. Every morning I wake up and take my thyroid replacement pill first thing and wait an hour before eating or drinking anything that might affect the absorption.  During my pregnancy my daily dose was changed 5 times to meet the increasing demands from my body and from Maddie. Since her birth 2 months ago, my dose has been changed twice as my body readjusts to my “new normal.” Without this one little daily pill, I would slowly go more and more hypothyroid and eventually my mind and body would shut down.  I would be so screwed in a zombie apocalypse scenario.

I have just one more year until I can say I’ve been cancer free for the magical five years = cured mark.  In this upcoming year, I have plans to undergo a whole body scan once my daughter is weaned.  Once again I will have to go hypo on purpose.  Once again I will have to take some RAI and go into isolation for a short time – this time from my husband and daughter – to protect them from my radioactive self.  Hopefully this time nothing shows up on the scan in my thyroid bed or in my lungs.

If I think on it too long, it terrifies me. So I try not to let my mind go there.  I have a long life ahead of me – including seeing my great-grandkids grow up – and I'm positive there are many adventures awaiting me!

World Cancer Day

Every year 12 million people receive a cancer diagnosis.  Of those, 7.6 million will die of their disease. 

I am one of 12 million who heard those words in 2009.    It’s amazing how isolated you feel when you hear those words yet there are 12 million others that have heard the same thing within that year. 

Reading the statistics above, I feel extra lucky today that I am a survivor.  Did you do the math?  Those numbers mean that over 60% who have cancer die of cancer. But it is estimated that 30-40% of those deaths could be prevented and as many as one third could be cured through early diagnosis and treatment.

It’s time for us to fight this global epidemic. Click on the logo above and sign the declaration urging our global leaders to come to action.

A cancer patient will thank you.  I thank you.

I’m Home!

A few random thoughts about isolation and coming home:

One. Cross Live In New York/Chicago/LA off the list of things to do. I could never make it living in a studio apartment which is definitely all I could afford in any of those cities. The longer I spent in isolation, the more I hated the fact that my chair was next to my bed which was next to my desk which was across from the dining table and kitchen.

Two. When spending all your time in a small space, little things start to amuse or annoy you. Like I was completely annoyed that every time I turned on the bathroom light, the bathroom fan also went on. Why did this make me mad? I have absolutely no idea. On the other hand, I was amused by the “Tree People” – guys that worked for a tree company and were staying at the same hotel. They parked right outside my room and their trucks multiplied during the week. Then voila! Yesterday a major front blew through and knocked out power lines and trees everywhere! Were they migrating in hopes the storm would bring damage? I may never know.

Three. If I have nothing to do but watch TV, I better have the full cable options because 5 ESPN stations are just not good enough for this chick. I spent most of my time sleeping through Oxygen and Discovery Channel series or desperately hoping that Showtime would show something other than football or boxing specials. Seriously, there are enough ESPN’s in the world and yet the premium channels feel the need to further expound on mindless sports. And before someone jumps down my throat for saying I am not fond of sports, let me elaborate. Nearly all professional sports players are grossly overpaid to play with a ball or puck yet some have the gall to complain about only getting $2.5mill a year and how that is unconscionable. Really? Same goes for the bankers who feel they are more entitled to the American public’s money than the ones breaking their backs working 3 jobs to feed their children.

Four. I missed my DVR. I just got one in May ‘09 and I don’t know how I ever lived without one before. I liken this to the need to have internet and a cell phone at all times. I lived very happily for at least 17years without even a computer let alone the internet and about 21years without ever having a cell phone. Losing either for a week now would be devastating.

Five. My sense of taste is now wonky. Everything I taste has a sweet tinge. Like eating pea soup for dinner but having an aftertaste of sweet that lasts until you eat something else. Because the sweetness is constant, I can’t stomach the thought of eating anything that is supposed to be sweet right now. The only time I don’t taste it is when eating and even then some things just don’t taste right. Brushing teeth does not help, nor does drinking water or tea. This is one of those side effects that patients tell you about but the Drs swear don’t exist.

Six. My sense of smell is now also wonky. I liken it to what pregnant women describe having – a super heightened sense of smell. I can smell rotting flowers before they start to wilt. I can smell the BO of people around me and it about makes me sick. I could smell the feathers in my comforter and could tell they need to be dry cleaned. All these things do not help when you are nauseated. Oh yeah but crazy smell and persistent nausea are also non-existent side effects.

Seven. There is no place like home.

Isolation Station

This is my new slogan for the week… or really pretty much since surgery over a month ago… Staying In is the new Going Out. Yes, I have the t-shirt thank you very much.

Today I happen to be feeling much better for the first time since last Wednesday. Not feeling normal yet, but I hardly remember what normal feels like so I'm just happy to not be fighting nausea for 98% of the day! Yesterday I started back up on my thyroid meds and even though it will take about 2 weeks for my TSH to start dropping into a more acceptable range I'm so glad that I'm finally on the way there.

I’ve had some questions about where I'm staying during my isolation period so I'll tell you I'm in an extended stay type hotel with a mini kitchen area and such. No maid service to radiate, brought my own pillows & comforter & towels & food… trying to keep the kitties and the hotel staff safe from my radioactive waves. For those of you who find this radiation thing to be a little far fetched, I'll give you the snapshot of my homeland security card – the one that will get me out of interrogation at the airport when I set of their radiation detectors for the next months. I was told to have this card on me at all times as it gives details about my treatment and contact numbers for verification. Anywho, back to the isolation room… Here are some more shots for your enjoyment.

You can see I was was watching an ANTM marathon on my hotel TV which is sitting next to my own personal TV. Odd I know, but with no TLC, Lifetime, A&E, 5 Discovery Channels, my DVR… I decided I needed my DVD player which wouldn’t hook up to the ancient hotel TV. So my wonderful parents brought me a TV that would work! I’ve also had a couple flower deliveries since “moving in” that have helped brighten the days.

So I guess that’s about all I have for today! For those curious what I ate as my first meal – it was the BK followed by dinner of grilled chicken and mashed potatoes from KFC. Since then I've had pizza, salsa from the Dungeon, toast with butter, Dutch cream curls, and ramen noodles. I know it sounds super nutritious but I've only been concerned with what will stay down. When I get back home is when I will actually start eating more normally in part because I will have my pantry, fridge, freezer, pots/pans, oven… Oh and I can’t wait until I can get my hands on some popcorn at the movies! I have missed that salty, buttery goodness…sigh… Oh and actually going out to see a movie would be nice too!

NOT Fun

I’ve had many calls/emails/FB/posts/texts asking me how I’m feeling now that I “glow in the dark.”  In one word: SICK.  Looks like my first 24-48hrs of this will be all about trying NOT to throw up.  If I do, I have to call the hospital immediately.

At first I felt ok, but after a couple hours the nausea started to set in.  Now it won’t go away.  I’m supposed to be sucking on lemon drops every 15mins but those make me feel sicker so I'm popping one as often as I feel I can.  I’m supposed to swish with baking soda every 30mins but that is dis-gust-ing so I'm doing that as often as I feel I can.  I’m supposed to be drinking [and going] twice as much as normal, but I can hardly stand to eat so I'm drinking as much as I feel I can.  My salivary glands are very sore and swollen so I'm massaging and putting a heating pad on – that is one thing I can actually stand to do at any time [yay for small victories!].

Other cancer patients and their families are advised “If it sounds good to the patient when they are feeling nauseated, give it to them because that is probably the one thing that will stay down.”  NOT me!  I wanted pizza last night at 10pm that was a big fat NO. [Mom said so!]  I’m resigned to oatmeal and rice cakes and chocolate zucchini bread – the same things I've been eating since September 18th – until Saturday 1pm. 

I do have to toot my own horn a bit and say I'm very proud of myself for NOT cheating on the LID, not even a little.  Granted I started a little earlier than expected because of the scheduling mix up and I was not total LID the weekend of my cousin’s wedding [Sept 19-20] but since then…

Oatmeal w/ brown sugar and cinnamon	bow tie pasta w/ homemade pomodoro sauce [v.good]
Rice cakes w/ Peanut butter and bananas	Flowering Teapot

On a more positive note, flowers were delivered to my “isolation station” today!  No pics yet but ich war sehr suprised und glücklich!  They were from “Gpa 09” [yes he did sign the card that way!]. My grandpa is about the sweetest thing ever – Thank You!

I Am Radioactive!

Got to the hospital this morning about 6:45am and headed to the now all too familiar radiology department. I have been the teensiest tiniest bit radioactive since yesterday so I was whisked away to the Nuc Med area pretty much as soon as I walked in the doors. 

First up on the docket for today – the whole body scan!  Basically you lay on a long plank like thing that is only about 1.5-2ft wide for 45min-1hr trying not to move while the circle (camera) passes over your entire body. Then they take you to another room, aim a telescope like camera at your neck and tell you not to move for 5 minutes, then they point it at your leg and tell you the same thing.  Its all a very strange process and I realize now it is harder to be still when you are told to do so!

After the scans were done, we were taken back into the whole body scan room to meet with the Nuc Med Dr.  My parents were with me and he was slightly confused as to who the patient was (kinda uncommon to get cancer so young huh?) which I found slightly amusing.  He basically gave us an overview of what RAI is and it’s purpose – I felt like I was in kindergarten because my knowledge on the subject is much higher than his explanation, I let him continue for my parents.  If anything he told them exactly what I've told them so that was good! (I will accept my doctorate now, thank you very much!) Then he said I would be give 200 mCi’s of RAI!  Ok so 200 mCi’s is pretty much the top dose they give anyone at one time so this slightly freaked me out.  Unfortunately my brain wasn’t working fast enough to get the questions out before he was gone so we headed home for a few hours to return at 1pm for my dose. (they don’t stock this on-site)  So we went to my place and I took a nap, my parents ate some Wendy’s while I chowed on a plain baked potato, and we gathered up the last of my isolation “gear” before heading back to the hospital. 

When I returned I was once again taken right back into a little room where they brought in a lead lined capsule that contained my tiny container of 2 radioactive iodine capsules.  We then had a bit of confusion over me getting/not getting a post treatment scan so when I left I was waiting for a call back.  Well because of the confusion, my Dr called me and said they saw very little thyroid remnant left in my neck (good) and no indication of metastasis (v. good) so with the large treatment dose they expect that everything will be ablated (killed) and they didn’t see any suspicious areas that would make them need a second look with the more sensitive post treatment scan.  I will be followed of course, and the scans can be repeated at any time if my tumor markers go up so overall this plan feels comfortable by all.

So now I'm in my isolation location for the next 7 days so I don’t damage my kitties with radiation!

Bored, Bored, Bored

The title pretty much says it all!

I’m bored of being cooped up in the house all day with no one visiting… bored of my stupid LID… bored of the repetitive TV shows… bored of the internet (gasp!)…

Dreaming of the moment I can eat real food again…

My brain isn’t working right so I can’t focus enough to read books, attempt to scrapbook, organize fundraisers, or even remember if I took my Tums 2 hours ago (no joke). I can’t even finish a sentence without losing a thought or forgetting an important detail!

My parents and Grandpa came by last night to restock my LID approved food stuffs and after not being able to find unsalted/unbuttered/no soy involved popcorn, they decided to buy me an air popper instead! So now I have the ability to make some popcorn to watch movies but I am a total disaster in the kitchen at the moment too!

I have over a week ahead of me where the hypo symptoms will continue to get progressively worse and then I go into complete isolation for 7-10 days… I think I just may go completely nutso by that point!

Go With The Flow

Had another doctor's appointment today with my surgeon. He's a cool guy so basically he came into the room and said "So... yeah, you already know what to expect so i don't have much to tell you!" LOL I have had this surgery before (left side) so I know what to expect pain/recovery wise after surgery. I know I will be hooked up to an IV with fluids until I can eat solids and that nurses will come into my room at 3am to make me hit my cheeks. (muscles there will twitch if my parathyroids were damaged causing my calcium levels to plunge) I also know to avoid Vicodin completely. He said he will be making my scar more symmetrical (oh thanks!) and that he will actually cut away the current scar tissue in order to have a cleaner, new scar. He did feel my neck again and then decided to do another ultrasound to make sure things looked the same. He said the right lobe still looks disease free (no nodules) but that there could still be microcarcinomas that don't show up on tests.... so basically we decided to proceed as originally planned. (anticlimactic, I know)

So I asked him some questions... I always have questions! My TSH was drawn on Friday and he said that turned out to be 0.34 suppressed which is right where I should be (0.3-0.5) so my daily thyroid hormone dosage is good. I asked him if the lymph nodes appeared to be fine and he said we won't know for sure until after my scans but they aren't concerning at the moment. Then I asked him if I would have a nuclear medicine or radiation oncology doctor do my RAI and he said it would be a nuc med Dr and that I would have a consult with him a few days before my scans/RAI. I told him i've been reading the research and it says I have an increased risk of breast cancer, couple that with my family history, I wanted to know if it would be a good idea to get scheduled for a baseline mammogram - he said yes, that would be a good idea... I asked him a few more questions and I believe I have a good estimate of a timeline...

The Flow:

• Pre Surgery - Call my PCP to get a Mammo ordered and performed (yay fun)
• September 1st 8:30am - completion thyroidectomy performed, stop all thyroid meds
• September 2nd - go home still off all thyroid meds, this time with no thyroid at all
• September 2-October 2 (approx) - be off thyroid hormones to go hypo, currently my TSH is at 0.34 (which is almost hyperthyroid for normal people) and I need it to get to 50.00 (10 times more hypothyroid than the almost hypothyroid normal people). This takes approximately 4-6 weeks and you feel like total h-e-l-l as all your body functions slow to a crawl.
• September 8th - post-surgery appointment & stitches removed
• September 20th - start the LID, hopefully this only lasts 2 weeks but this again depends on my TSH levels.
• October 4ish - Hopefully levels will be high enough to meet with the Nuc Med doctor and schedule my tracer WBS for a couple days later (low dose of RAI)
• October 6ish - tracer dose WBS to check for thyroid cells still in the body - this will be the first time we will be able to find out if the cancer spread to lymph nodes or elsewhere
• October 8ish - get 100-150 mCi dose of I-131 (radioactive iodine) - unsure at this point if I will have to stay overnight to protect the safety of the public from my radioactive cuteness. No seriously, I will be emitting gamma rays sorta like X-Rays at not so safe levels.
• October 8-15ish - the isolation period. I can't be anywhere near children or pregnant people and have to be at least 3-6ft away from all others and only for very short periods of time. I have to suck on lemon drops for the 1st 24-48hrs to keep the radiation from burning my salivary glands. I have to pee every hour for the first 24-48hrs to prevent it collecting in my kidneys and I have to flush twice after each use. If I vomit they have to call the hazmat team!
• October 10ish - get a post-RAI WBS. This one should show what the 1st WBS did, except the very high dose of RAI will make it much more sensitive in showing any possible mets.
• October 11ish - I can start taking my thyroid meds again - YAY!
• November 22ish - check TSH levels. Goal: 0.3-0.5. Continue checking levels every 4-6 weeks if not in the goal range. It can take months after going so hypo to get your levels back to the goal range.

So that's my life for the next couple months in a nutshell - any questions?