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!

Time Goes So Slowly…

…when you are waiting to find out if you have cancer again.

I’m anxiously awaiting the biopsy of “Jo” and the days seem agonizingly long. As of today there are 18 more days of waiting until the biopsy and who knows how long after that to hear results.  We *might* know something preliminary that same day – I really hope so.

So in the meantime, my imagination is left to run wild with all the things it could be. Based on my latest thyroid tumor marker labs, a recurrence of that is not likely to be the culprit. That leaves things like an infection, cyst, lipoma, and of course a second primary cancer as possibilities. 

While cancer is probably the lowest possibility on the list, its hard to ignore. Since I’ve had cancer once, I have about a 20% higher chance than the rest of the population of getting a second type.  If you look at studies on my specific type of cancer & its treatment, you find that I have a 30-40% chance of getting a second primary cancer at some point.

To get my mind off things for a while, I’m heading to Michigan to see my new nephew so I know at least the next 6 days will fly by!  Then its back to work in St. Louis for 8 days and then home to Tennessee for Easter weekend before B-Day.

One Advantage

Hearing all the reports of the radiation worries in Japan lately makes my heart go out to the people there.  The country is already devastated from the damage caused by the earthquake on March 11.  Now those poor people have to worry about their water and food and even the air…

I’ve been reading the news reports and thinking how bizarre it is that the radiation that is causing all the hubbub is the very same stuff that I had to ingest in quite a large and concentrated quantity just 17 months ago.  The very same radioactive isotope used as the treatment for thyroid cancer also causes thyroid cancer. 

I have first hand knowledge of what can happen if you ingest this isotope in high doses. I won’t recount all the dirty details of just exactly what did happen in this post but if you are interested you can read about it here, here, or here. 

After going through all of that and having every last thyroid cell radioactively burned out of my body, its nice to know that there is at least one thing I won’t have to worry about should a nuclear disaster happen nearby.

Micrometastasis? Maybe.

micrometastasis (n.): the spread of cancer cells from the primary tumor to distant sites to form microscopic secondary tumors.

My post-RAI WBS turned up activity in my “residual thyroid tissue and/or local lymph nodes”. (great specificity nuc med) The residual thyroid tissue is expected to show up because your thyroid is literally attached to most of the structures in your neck (most notably your windpipe) so they can’t physically get EVERY cell without damaging other, more important organs. The part about them not knowing if it was also showing uptake in local lymph nodes makes me entirely not confident in the nuc med physicians at my hospital. Well that and the fact that they didn’t think I needed a post-RAI WBS when it is ALWAYS done everywhere else… but I digress…

The WBS also showed “diffuse uptake in the left lung posteriorly” in a pattern “not consistent with focal metastatic disease.” What this means is there was RAI uptake in my lung but it didn’t show focal tumors (macrometastasis). If you remember, radioactive iodine is ONLY taken up by thyroid cells in the body (cancerous or regular) and whatever they gave me that wasn’t taken up by my residual thyroid tissue was excreted in urine, sweat, and saliva. There is NO reason there should have been any uptake in the lung with the exceptions of the presence of thyroid cells in the lung tissue OR an infection/inflammatory process (like pneumonia or pleural effusion). The recommendation by nuc med was to get a chest x-ray for further characterization which I had done on Friday. My chest x-ray was CLEAR. Meaning I have no pneumonia or pleural effusion or any other inflammatory process.

So what does this mean? Without the presence of focal metastatic disease (cancerous nodules) there is the strong possibility that I have diffuse micrometastasis of my cancer throughout my left lung. It could also have been a fluke in the machine but that is the less likely scenario.

So ok, what does that mean? In patients without metastatic disease elsewhere (this is why the lymph node comment bothers me) long term survival rates are very high when lung mets are too small to see on x-ray and have only shown up on post-treatment WBS. 10-year rates are still near 100% with these diffuse micrometastases… but when the mets become micronodules (<1cm) survival rates drop to around 40% and when mets become macronodules (>1cm) rates drop to 15%. It not showing on the x-ray is common in patients my age and is actually a good thing. Also, the dose of RAI I had (200mCi) is exactly what would have been prescribed had we known about this prior to my treatment and the follow-up course should not change at this point. In 8-12 months I should have a follow-up scan and if uptake is present on that scan, I will need another 200mCi of RAI, repeat that cycle until no uptake is seen on the post scans. We should also be monitoring my thyroglobulin levels and if they are elevated that will indicate persistent disease.

That all being said, I think its time for a second look/opinion on my case. I plan on calling my PCP for a referral to a thyroidologist and the only ones in state are at U of M. Any metastasis in thyroid cancer tends to mean higher chances of recurrence and/or further spread so I think having a specialist review my case would be a good thing at this point and if they have a more aggressive treatment plan in mind I will probably transfer my care to them.

So lots to think about, pray about, and try not to worry about in the coming months!

Too Much, Too Soon

I decided to make my first foray back into the public today [aside from Dr’s offices that is] by going to breakfast with my family and then grabbing some groceries.  According to my hospital issued isolation precautions this was ok but just in case we made some extra precautionary plans to avoid pregnant people and kids for lengths of time.

From the moment I woke up I knew it was going to be a tough day.  You see, I haven’t slept more than a couple hours at a time for days now but last night I fell asleep around 12:30am and then slept straight through my alarm an extra 45mins.  When I realized how late it was I had 15mins to get ready before my parents picked me up! [note: still not able to drive]  I was feeling the exhaustion down to the very center of my bones.

We went to breakfast and afterward, mom asked if I needed anything from the store.  Of course I did because the only food I had in the house was LID friendly [nightmare] or was the normal random odds and ends that don’t make up an actual meal.  So I told her yes even though all I wanted to do was curl up in a ball in bed.  We grabbed things at the store and my mom said I was looking pale so she knew it was time for us to go.  We had to make one more stop for my kitties [food] but then they took me home.

Sounds like a crazy big exciting day huh?  Apparently it was for me.  The exhaustion is ridiculous and there is simply no way to explain it to its depth or breadth.  My entire body hurts.  My neck is throbbing and I can’t lay down because of the interminable reflux.  I could go on and on complaining of various symptoms but I won’t.  I will just say at the moment I'm completely miserable and I hope that I can sleep again tonight.

Worst part of today?  I didn’t even enjoy my breakfast because I can no longer taste anything.  Another one of those “no side effects” side effects from the RAI.

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.

Small Change Of Plans

I am now getting a post-therapy whole body scan on Friday.

After thinking about it, researching things, and getting a second opinion from a top Dr in the country via email… I called my Dr and explained my position on wanting one. The therapy dose of iodine is much higher making the post scan much more sensitive to showing metastasis to lymph nodes, bones, etc.

My Dr said even if it did show metastasis, we have already treated it, it wouldn’t change the follow-up, and might make me worried about metastasis we have already treated. I told him I understood but I wanted to know exactly what I was facing so that if my 1yr scan came back clean, it would be even better news – or if something popped up on my 1yr scan that doesn’t show on this one, we will know it hasn’t been there long.

Well since the hard part is getting the isotope and I've already had that, he worked out a time for me to “go under the camera” and I'm feeling very good about advocating for my own healthcare.

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!

Here We Go…

I love this graphic (a combo of a couple clip art designs mashed together by moi) because to me the image portrays strength, confidence, and a certain sass but also the intimidation, fear, and uncertainty that comes with having a radioactive chemical coursing through your body.

Tomorrow (Wednesday) I will get my scan dose of RAI (about 3-5 mCi) at the hospital in the morning and then I will come home. 

Thursday morning I will return to the hospital to get my scan at 7am.  Then I will review my scan with the Nuc Med Dr at 8am.  The scan should tell us how much thyroid tissue I still have left in my body.  Based on the amount of thyroid tissue left, he will determine the treatment dose of RAI (usually 100-200 mCi) which he will then prepare and at 1pm I'm scheduled to swallow the dose.  From what I've heard, I will have to stay there for a couple hours to make sure there are no immediate side effects that would require a hazmat team, then I will be released to go home. Well I'm not going home exactly… but I will be free to go and will be in isolation from everyone for 7 days and then I will be isolating from pregnant people and kids for another week.

Sometime during my isolation period, I will be scheduled for my post-treatment scan which should give us a very clear (more sensitive because of the high amount of RAI) picture where any remaining thyroid tissue is – goal is to see uptake only in the thyroid bed area.  If we see anything in the jaw, chest, spine, or lung area we could be looking at metastasis to the lymph nodes, bones, or lungs.

So it all begins tomorrow and then we wait once again!

Gettin’ Dosed!

The surgeon’s office called this morning to tell me that my TSH was 35.67 and that my Nuclear Med stuff has all been scheduled! I will be getting my tracer (scan) dose of RAI on Tuesday and have my WBS, Consult, & Ablation dose RAI on Wednesday! Stop the bus – WHAT?! I’m not ready!!!

Everything I had heard said that it was hard to get into Nuc Med so expect at least a week lead time – guess that isn’t so at SH! Needless to say, I still have to figure out where I'm going to go for isolation, I haven’t been on the LID, and I have a wedding out-of-town to go to this weekend so I feel like there is no time to prepare or start cleansing my body of iodine! I have to believe that this is His timing and not mine… and that everything is going according to His plan…

So here is the timeline:

• Tuesday 22nd 6:45am (about 1/2hr-1hr) – head to the hospital, get my tracer dose of RAI, go home.
• Wednesday 23rd 6:45am (ALL DAY) – head to the hospital, WBS at 7am (2hrs), consult with Nuclear Medicine Dr. to discuss scan results and RAI dosing at 1pm, sometime in the afternoon receive my ablation dose of RAI.
• Wednesday 23rd – Tuesday 29th – ISOLATION
• Wednesday 30th (??) – Post-Ablation WBS – this one hasn’t been scheduled yet.

After this is all done, I can start back on the thyroid hormone meds and start bringing myself out of this extreme hypothyroid state (expecting TSH in the 60-80’s by RAI time). I expect for this to take about a week before I feel normal-ish again.

So I'm currently a bit stressed. Being gone this weekend for the wedding is making things a bit more stressful too. I have a lot to do & prep before Tuesday but I'm sure that everything will work out.

At least my hair will stop falling out sooner, right? Its been getting pretty thin so I was starting to worry!

Lab Rat

So ok, I realize I haven’t done an update on how I'm doing physically in a while. Mostly, there hasn’t been much to tell… Last week I got my labs drawn to check my calcium and my Dr hasn’t called to tell me I can back off on the Tums yet so it must not be normal yet. I plan on calling next week to see if I can start tapering the dose and/or if I need another level drawn soon.

Today I got my labs drawn to check my thyroid stimulating hormone (TSH) and I hope to hear about that on Monday. We need it to be at 30.00 or higher in order to schedule my pre-ablation WBS, radioactive iodine ablation, and post-ablation scans with Nuclear Medicine. They won’t even consider talking with you until you get to that point. I’m feeling positive that my TSH has been rising because I've been experiencing hypothyroid symptoms more acutely this week. I’ve been sleeping 12-14hrs/day, hair is falling out regularly, I've stopped feeling like I have hot flashes, and have stopped running a constant temp of 99F+ (that was annoying for over a week).

Yesterday and today I've been COLD. Yes, I know the weather has cooled a bit but I live on the 3rd floor, have my windows shut, layers of 3 shirts and 2 blankets and my hands and feet cannot get warm. I probably should try some socks too but I like the barefoot freedom of summer and its not officially fall… yet! I’ve also started getting the stupid body aches and headaches… and my mom and dad think I'm not making much sense or remembering things they told me so there goes my cognition! (sorry if the blog doesn’t make sense in the next couple weeks! lol) I have noticed it’s harder to concentrate on anything for more than a few minutes so its a good thing I'm a list-maker!

Other than that, I'm hot on the trail for sugar free lemon drops – I have to eat one every 15 minutes when going through RAI for the first 48hrs, even waking every couple hours overnight to eat them. The sugar ones can make you nauseated (hazmat team needed) and the increased acidity of saliva caused by the RAI is hard on teeth so adding sugar into the mix means cavity city. The parotid glands also tend to have swelling and blockage issues after RAI so having these on-hand to stimulate salivation is key. I also need to remember to buy baking soda to do rinses several times a day to neutralize some of the acid. The stuff I have is OLD and I'm NOT putting it in my mouth!

Still trying to figure out what to do after RAI too but all will be clear in time I guess! I’m not worrying too much about it until I know when it will be, hence why I'm praying my TSH went up, uP, UP!

Is That True?!

I’ve found myself saying or thinking this exact thing so many times over the past few days. If any of you have gone through or know someone who has gone through a cancerland journey, maybe you can relate to the confusion that happens when you start reading up on a particular disease. One study says this another says that… several studies say this but overall the medical community doesn’t endorse those thoughts… With so much science and research out there you would think there would be more concrete answers! I guess it goes to show the awesome wonder that is the human body.

Some of the questions I have been asking myself (and the Internet research engines) if they are true:

• Can RAI really kick you into premature menopause?
• Can getting pregnant (in the future) kick up a recurrence of my cancer?
• Do most young people with one primary cancer get another primary cancer? (I personally know 4 women for whom this is true)
• Since my tumor had burst, did the cancerous cells spread out all over the left side of my neck?
• Does the LID really work to increase the effectiveness of RAI?
• Will my hair stop falling out? (it isn’t as bad as having chemo but every time i touch my head, i come back with hair in my hand)

There are a lot more i’m sure, I just can’t think of them now! They tend to pop in and out all day…

Surgery #2 Update

I'm coming off some darvocet so bear with me ;o)

I know you are anxiously awaiting my update on surgery so here it goes! We got to the hospital pretty much on time (6:55am), picked up Grandpa in the lobby and headed to the surgery check in. We were surprised to find a nearly empty surgical check-in room! Either everyone was much earlier than me or much later or... they just didn't have a big schedule? Anyway, once I got checked in I waited maybe 10 minutes before getting called back to the pre-pre-surgery area. (btw i like their scale, it said i was 4lbs lighter than my home one) When we got back there I was told to pee in a cup (urine preg, required on all women of age) and disrobe and then wait. So wait we did... About 8am they took me to the pre-surgery area where my IV was started in my hand (ouch) and I chatted with my surgeon and anesthesiologists briefly. Then I got some happy medicine, dropped my parents off at the surgical waiting room, and remember being told to move to the other bed and then I was out!

I woke up in PACU to someone in the next bed moaning like crazy. I didn't make a sound and I think I startled the nurse when she saw my eyes were open. She asked if I was doing ok, I said yes but it was starting to hurt so off she went to get some meds. She came back with toradol and dilaudid - the good stuff - and I was feeling good in a matter of seconds. My mom came back to see me and it seemed like just a few minutes later I was off to my room! (this was maybe noonish?)

When I arrived on 5West I was promptly told that I had the best room on the floor -5 West has all private rooms and is usually reserved for hysterectomy patients (my connections are in the OBGYN world) and the views of downtown were amazing!

I was also near the helipad so I saw aeromed land and take off a few times. By this time I had several visitors in my room - Gma & Gpa K, Gpa S, Mom, Dad, Katie.. I started drifting off to sleep and they headed to grab lunch. Everyone was amazed that I was talking so well - much better than last time but this time they didn't have to scrape my vocal cord. I was armed with my new pink quilt (from work) and pink pillowcase (from Jessa) and all the nurses & techs loved it!

So basically my stay went like this: I had my vitals taken every 30mins-1hr, was poked by lab for calcium levels every 4-6hrs and got up to walk a couple times that night. They kept me packed with ice to keep some of the swelling down but I still have chubby cheeks :) Someone in surgery was a bit overzealous because the pulse ox was on so tight it had bent my nail down – yeah that hurt a bit. Then I noticed that my nose hurts a little because I have a bruise on the bridge of my nose and some slight bruising under my eyes from the breathing tube/mask. I also had betadine from my nose to the backs of my shoulders to about 5 inches below my collarbone. I guess I would rather have them be overly cautious!?

This morning I was told that although my calcium levels were still in the “good” range, they had continued to drop during my stay. My surgeon wanted them to stabilize before sending me home so I had Tums ordered and another blood draw. One of the side effects of my surgery is damage to the parathyroid glands which control blood calcium levels. Hypoparathyroidism (hypocalcemia plus hyperphosphatemia) can cause numbness & tingling, muscle cramps and in severe cases seizures. So you can see why they were concerned with my levels dropping… It means that my parathyroid glands took a bit of a beating through both surgeries. My last blood draw showed that my levels were stabilized after the Tums so I was able to come home!

Now i’m home and ready to ice and rest once again. I have darvocet for pain and have to take 2 Tums 4 times a day (8 total per day) until further notice. I have band aids in both elbows and on both hands from blood draws and IV’s and of course the giant bandage on my neck! :) That can come off tomorrow when I can finally shower so i’m eager to take a peek behind the “curtain.” I will be back at the Dr. on Tuesday to get my stitch out and then we start more blood draws to see how fast my TSH rises… hopefully it goes fast so I can get my RAI and be done!

Decisions

Something has been on the back of my mind since this whole mess started. The RAI that I have to get could potentially kick me into menopause - not likely but still a possibility. What does that mean, well you all know what menopause is [i think?] but being I have no children at this point in my life, it could also potentially mean that having children would no longer be an option.

I've been trying not to really think about it much because who likes to focus on the negatives? This past weekend at the 3 Day, my Aunt was working on the medical crew with some Oncology nurses who told her to tell me to freeze my eggs ASAP.

I did some reading on this when I first heard of this as a possible side effect. I found that it is very expensive [about $10,000] to harvest the eggs and then you have to pay to keep them frozen as well as pay for the implantation procedures. Also, there is only a 2-4% chance that a frozen egg will result in a live birth. If you freeze a fertilized egg the percentage is much greater, but then there is that little problem of not having a someone around to fertilize the egg... Yes, I could use an anonymous donor or ask a friend to do the honors but that just feels wrong to me. If I was engaged or in a serious relationship talking about marriage, then maybe it would be a discussion to have. If I was married it would be an obvious discussion to have. Being single, its my decision alone to make.

My decision when I first did some research and even now after the well meaning warnings from the oncology nurses is to let go of this worry and put it in God's hands. If i'm meant to be a biological mother, I will be. If that is not possible, adoption is always an option. If i'm not meant to be a mother in any way, then there must be another mission for me out there...

I'm at peace with this decision and am not worried about what the future may or may not bring.

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?

Guinea Pig

I was reading about advances in thyroid cancer treatments and really, there have been few to no changes since the 1950's! Apparently, the scientific community found something that worked pretty well so they figured why fix it. Well, with the emergence of more aggressive thyroid cancers and RAI resistant strains, there are more and more research projects out there. Most of them deal with advanced (with distant mets) or non-RAI avid (doesn't uptake the radioactive iodine) types but there is currently ONE clinical trial out there for stage 1&2 papillary thyroid cancer. There are 2 locations running this trial - Bethesda, MD and Washington DC and both are currently accepting participants.

So why am I thinking about this? After all, its basically like being a human guinea pig or donating your body to science before you are gone, right?

Well, let me tell you some small details of this trial. They are doing RAI therapy in small doses (30mCi instead of standard 100-200 mCi) given with small doses of Lithium. I know that the RAI is "safe" and I know that the Lithium is "safe" and of course the placebo pill is safe. So this isn't involving some new, crazy drug. Apparently, the docs believe that the Lithium increases the uptake time and sensitivity of the RAI so the body isn't exposed to so much radiation. The lower dose of radiation has less risk of side effects...and if the small dose doesn't kill off the cancer, you can get another dose.

So it seems there are a lot of good points to this one and I could be helping future thyroid cancer patients. Anyone have thoughts to ponder on this?

The LID

As my completion surgery date approaches, i've been thinking a lot about the recovery period and the prep for my WBS and RAI. One part of that involves going hypo for the scan as well as being on the LID. (that lingo post should be coming in handy right about now!) There are a few things that worry me about this period...being ridiculously tired, not being able to drive, losing hair (not as bad as chemo, tG!)... will I be able to function enough to make all my meals from scratch? So far all I have pre-prepped is a few containers of broccoli frozen into single serves and homemade fruit sorbet. Pretty much everything in my pantry currently will be off limits as well as the little bit I have in the fridge.

Here are the "rules" of the diet... if anyone has recipe suggestions please post em!

Avoid Completely:

• Iodized salt & Sea salt
• Seafood & sea products (this includes seaweed, kelp...goodbye sushi!)
• Sea based additives - carrageenan, agar-agar, algin, alginate, nori
• Dairy products in all forms (butter, whey, ice cream, milk, cheese...)
• Egg yolks or foods containing whole eggs
• Commercial bakery products
• Red Dye #3 (basically avoid any brown, red, orange processed foods)
• Chocolate (for its milk content, cocoa powder and some very dark chocolate is ok)
• Molasses - sulfur or blackstrap kinds, also brown sugar containing molasses
• Soybeans and most soy products (soy oil and lecithin are ok)
• Beans: red, kidney, lima, navy, pinto, and cow peas (all others are ok)
• Rhubarb and potato skins
• Iodine containing medicines, vitamins, & food supplements
• Restaurant, Fast, Manufactured & Processed foods - take a look at your labels, nearly everything contains salt and you can't guarantee it was non-iodized

Limit:

• Fresh Meats/Poultry - 5oz per day - make sure not injected with broths
• Grains & Cereals - 4servings per day
• Rices - iodine content varies widely depending on the region where it was grown. Basmati rice is best for LID.

A-OK:

• Fresh fruits and fruit juices
• Vegetables - preferably raw, fresh cooked or frozen (not canned)
• Unsalted nuts and nut butters - no JIF for me :(
• Grain/Cereal in moderate amounts
• Meats & Poultry in moderate amounts
• Sugar, jelly, honey, maple syrup, & unsulfured molasses
• Black pepper and fresh or dried herbs
• All vegetable oils. Salad dressings if they have only allowed ingredients
• Homemade foods
• Cola, diet cola, lemonade, sodas (with no red dye #3), non-instant coffee, tea, beer, wine, & other alcohol.

Ok, so do you have ideas? I'd love to hear them!!

Top 15 Things NOT to Say to a Cancer Patient

We know that people mean well, but more often than not it becomes open mouth, insert foot. Don't try to think of the "right" thing to say, just try to be normal. In my case, my cancer is about all I can think about and I am more than willing to talk about it and answer any questions... but this isn't true for everyone. If you know someone going through this just be open, we appreciate that! If you have said one of these things below, don't worry, we forgive you! And remember, this list is supposed to be humerous :)

1. "Other than that, how are things?" [uhm....]
2. "Oh, my aunt/cousin/grandfather died of that same cancer!" [i was having a good day]
3. "My (fill in blank here) had (fill in type here) cancer and that was (fill in number) years ago. You'll be fine!" [all cancer is not created equal]
4. "Just think of all the money you'll save on shampoo!" [yeah it will really help with the $10,000 I just dropped on my chemo bill for the week!]
5. "You just have to stay positive" [ok, i'm positive i want to give this cancer back]
6. "You'll be fine" or "So, your fine now... right?" [if fine means i'm not dying, then yes]
7. "God gives you only what you can handle" [i wish i had known that sooner, i would have worked harder on being a weaker person]
8. "Every cloud has a silver lining" [oh yeah, well my radiation therapy room is lead lined!]
9. "Its just a bump in the road" [living with a cancer diagnosis, having multiple surgeries, gaining weight, ingesting radioactive iodine for scans, insomnia, being depressed and anxious, being hypo, going on the LID, being isolated, ingesting really high doses of radioactive iodine for radioablative therapy, lifelong daily replacement TSH, labwork, yearly follow-up labs and scans...its more like a long and winding mountain road!]
10. "Don't worry" [be happy.. don't worry, be happy now...do dodo dodo dodododo dododo...sorry must be the lack of concentration symptom shining through]
11. "Lance beat cancer" [uhm do i look like a 40yr old MAN?]
12. "At least you got a good kind of cancer" [yeah, i was going for prostate cancer but this one is WAY better!]
13. "You'll be fine, you have a great attitude" or "If anyone can beat it, it's you" [I don't have cancer, I don't have cancer, I don't have cancer...ah the power of positive thinking!]
14. "Don't worry, your hair will grow back" or "You look good bald!" [Its the newest fashion, let's do your hair next!]
15. "If there's anything I can do..." [ok so this one isn't really something not to say, just make sure that you really would do anything. Better yet, don't wait for them to ask (most of us are used to taking care of others, not being the ones taken care of) - send flowers, cards, visit, make a meal without being asked because its always welcome!]