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!

All Clear! (well kind of…)

I had a busy day with 2 doctor appointments! Grandpa was my chauffer to the first and mom drove me to the second.

First one was with the dentist to get my new retainer. His assistant saw my stitches and steri-strips and asked what happened to my neck (I had a diamond necklace surgically implanted so no one could steal it). My dentist knows what has been going on and he asked how I was doing and what the results were. I said I didn’t know yet but I was getting my results (hopefully) and my stitches taken out in the afternoon. Then he graciously offered to take my stitches out and I told him no way, I still wanted to like him after the appointment!

Then I had lunch with Grandpa and mom at Russ’ where they did the handoff. Then mom and I headed up to the Surgeon’s office to get my stitches pulled out and to hear the results of my pathology. He came into the room and immediately said that my right lobe and lymph node were all clear of cancer! YAY! I was still digesting this news as he pulled out the stitch. Then he did some reflex tests because of my calcium issues and gave me lab slips to check my calcium (today) and my TSH (next week). I’m still on the Tums but he did mention tapering the dose if this test comes back good!

Future plan: I'm still having the RAI because of the tumor on the left lobe - we still don’t know if it spread on that side to lymph nodes, etc. I will have a whole body scan with a tracer dose of RAI and whatever that shows determines the dosage for the real RAI. After I get the real deal RAI I will get another super sensitive whole body scan – this one will tell us if even a tiny amount of cancer went anywhere else, and the real deal RAI will kill it.

So its now a waiting game until my TSH levels go above the 30’s. (I’m starting from 0.34), at which time we can schedule the first scan and appointment with nuclear medicine (the thyroid cancer version of chemo/radiation).

	Z scar & swelling 3 days after surgery
scar & swelling 1 week after surgery with stitches removed a

Calci-YUM!

Tum, Tum, Tum, Tum….TUMS!

So my calcium is still all out of whack! I get crazy tingling in my hands, arms, feet… it basically feels like my hand fell asleep and is starting to wake back up almost constantly. The Dr. said that if I got this sensation in both hands and around my mouth that I would have to get checked ASAP. So far i’ve had both hands, one hand & one foot, or just my mouth tingling - but never 2 limbs plus my mouth at the same time. Believe me I will be having a chat with the Dr on Tuesday when my stitches get pulled out because this is nuts!

To combat a calcium plunge, i’ve been dutifully chewing on 2 peppermint Tums tablets every 4hours while i’m awake. That equals 8 peppermint Tums a day or approximately 160% of my daily recommended value. Even this cannot stop the tingling and I wonder if I will ever be able to stop chomping on the chewable chalky peppermint goodness that is Tums? I’m thinking I must have some parathyroid damage so is it permanent or are they in a recovery period? Only time will tell… in the meantime, its time for my 7th & 8th breath refreshers of the day!

Hit by a Truck

Ok so i’ve been feeling pretty good overall since surgery. There has been the “normal” pain and swelling but my voice has only been a little hoarse and I didn’t have the vicodin nightmare that happened after the last surgery. Feeling good, however, can be a fleeting thing…

After I got home from the hospital, I pretty much spent the day sleeping on the couch while my dad watched Top Chef (and dozed off) on my loveseat. So when my mom came over after work I was wide awake and feeling good. I was so awake that I stayed up reading after my mom went to bed. (Mom is staying with me for a few nights – good thing I have a guest room!) I woke up once during the night but took some meds and got a new ice pack and went back to bed until morning. Thursday morning I was able to take of the bandage and shower for the first time since Tuesday morning. The bandage was taped on really well and it hurt to pull off. I’m also slightly allergic to surgical tape adhesives so it had burned my skin in one place. It didn’t really help that the betadine also makes my skin break out - yay for being a blonde with fair, sensitive skin! The shower was wonderful though and I felt so much better after washing my hair!

My mom had the day off and my aunt Pat came over so we could have a girls day. We looked at pictures, talked, watched Confessions of a Shopaholic and ate Chinese food. I was sitting up and talking almost the entire time but still felt good. When she left, Vanessa and Lindsay stopped by for a visit and I was up and talking for another couple hours but still felt good. Then my mom and I had dinner and I finally laid down to relax a bit… My neck was throbbing and my ice packs couldn’t get cold enough. It was at that point that I knew I had done too much, too soon. I took some extra meds and got out a heavy duty ice pack and slept like a rock.

I woke up this morning and feel exhausted and bruised from the bridge of my nose to my waist – basically like i’ve been hit by a truck! Today’s plan is to rest all day so I can be up for any visitors that stop by tonight, and to also save up some energy so I can visit a little with family this holiday weekend. If i’m feeling up to it, my mom is going to bring me up to Gma/Gpa K’s house in Newaygo for a few hours on Sunday and to Gpa S’s BBQ on Monday. That’s the goal at least!

	Flowers, cards, magazines, scrapbook supplies… My family and friends rock!

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!

Random Thoughts

I thought this was hilarious...why not add a bit of humor to surgery day? (ps i set this to auto post so don't get upset this isn't an update on my post-surgery status!)

Random thoughts from people our age...

-I wish Google Maps had an "Avoid Ghetto" routing option.

-More often than not, when someone is telling me a story all I can think about is that I can't wait for them to finish so that I can tell my own story that's not only better, but also more directly involves me.

-Nothing sucks more than that moment during an argument when you realize you're wrong.

-Have you ever been walking down the street and realized that you're going in the complete opposite direction of where you are supposed to be going? But instead of just turning a 180 and walking back in the direction from which you came, you have to first do something like check your watch or phone or make a grand arm gesture and mutter to yourself to ensure that no one in the surrounding area thinks you're crazy by randomly switching directions on the sidewalk.

-I totally take back all those times I didn't want to nap when I was younger.

-Is it just me, or are 80% of the people in the "people you may know"feature on Facebook people that I do know, but I deliberately choose not to be friends with?

-Do you remember when you were a kid, playing Nintendo and it wouldn't work? You take the cartridge out, blow in it and that would magically fix the problem. Every kid in America did that, but how did we all know how to fix the problem? There was no internet or message boards or FAQ's. We just figured it out. Today's kids are soft.

-There is a great need for sarcasm font.

-Sometimes, I'll watch a movie that I watched when I was younger and suddenly realize I had no idea what the f was going on when I first saw it.

-I think everyone has a movie that they love so much, it actually becomes stressful to watch it with other people. I'll end up wasting 90 minutes shiftily glancing around to confirm that everyone's laughing at the right parts, then making sure I laugh just a little bit harder (and a millisecond earlier) to prove that I'm still the only one who really, really gets it.

-How the hell are you supposed to fold a fitted sheet?

-I would rather try to carry 10 plastic grocery bags in each hand than take 2 trips to bring my groceries in.

-The only time I look forward to a red light is when I’m trying to finish a text.

- A recent study has shown that playing beer pong contributes to the spread of mono and the flu. Yeah, if you suck at it.

- Was learning cursive really necessary?

- Lol has gone from meaning, "laugh out loud" to "I have nothing else to say".

- Answering the same letter three times or more in a row on a Scantron test is absolutely petrifying.

- My brother's Municipal League baseball team is named the Stepdads.Seeing as none of the guys on the team are actual stepdads, I inquired about the name. He explained, "Cuz we beat you, and you hate us." Classy, bro.

- Whenever someone says "I'm not book smart, but I'm street smart",all I hear is "I'm not real smart, but I'm imaginary smart".

- How many times is it appropriate to say "What?" before you just nod and smile because you still didn't hear what they said?

- I love the sense of camaraderie when an entire line of cars teams up to prevent a dick from cutting in at the front. Stay strong, brothers!

- Every time I have to spell a word over the phone using 'as in' examples, I will undoubtedly draw a blank and sound like a complete idiot. Today I had to spell my boss's last name to an attorney and said "Yes that's G as in...(10 second lapse)..ummm...Goonies"

- While driving yesterday I saw a banana peel in the road and instinctively swerved to avoid it...thanks Mario Kart.

- MapQuest really needs to start their directions on #5. Pretty sure I know how to get out of my neighborhood.

- Obituaries would be a lot more interesting if they told you how the person died.

- I find it hard to believe there are actually people who get in the shower first and THEN turn on the water.

-Shirts get dirty. Underwear gets dirty. Pants? Pants never get dirty,and you can wear them forever.

-I can't remember the last time I wasn't at least kind of tired.

- Bad decisions make good stories

-Whenever I'm Facebook stalking someone and I find out that their profile is public I feel like a kid on Christmas morning who just got the Red Ryder BB gun that I always wanted. 546 pictures? Don't mind if I do!

- Is it just me or do high school girls get sluttier & sluttier every year?

-Why is it that during an ice-breaker, when the whole room has to go around and say their name and where they are from, I get so incredibly nervous? Like I know my name, I know where I'm from, this shouldn't be a problem....

-You never know when it will strike, but there comes a moment at work when you've made up your mind that you just aren't doing anything productive for the rest of the day.

-Can we all just agree to ignore whatever comes after DVDs? I don't want to have to restart my collection.

-There's no worse feeling than that millisecond you're sure you are going to die after leaning your chair back a little too far.

-I'm always slightly terrified when I exit out of Word and it asks me if I want to save any changes to my ten page research paper that I swear I did not make any changes to.

- "Do not machine wash or tumble dry" means I will never wash this ever.

-I hate when I just miss a call by the last ring (Hello? Hello?Dammit!), but when I immediately call back, it rings nine times and goes to voicemail. What'd you do after I didn't answer? Drop the phone and run away?

-When I meet a new girl, I'm terrified of mentioning something she hasn't already told me but that I have learned from some light internet stalking.

-I like all of the music in my iTunes, except when it's on shuffle,then I like about one in every fifteen songs in my iTunes.

-Why is a school zone 20 mph? That seems like the optimal cruising speed for pedophiles...

- As a driver I hate pedestrians, and as a pedestrian I hate drivers,but no matter what the mode of transportation, I always hate cyclists.

-Sometimes I'll look down at my watch 3 consecutive times and still not know what time it is.

-I keep some people's phone numbers in my phone just so I know not to answer when they call.

-Even under ideal conditions people have trouble locating their car keys in a pocket, hitting the G-spot, and Pinning the Tail on the Donkey - but I’d bet my ass everyone can find and push the Snooze button from 3 feet away, in about 1.7 seconds, eyes closed, first time every time...

-My 4-year old son asked me in the car the other day "Dad what would happen if you ran over a ninja?" How the hell do I respond to that?

-It really pisses me off when I want to read a story on CNN.com and the link takes me to a video instead of text. -I think the freezer deserves a light as well.

-The other night I ordered takeout, and when I looked in the bag, saw they had included four sets of plastic silverware. In other words,someone at the restaurant packed my order, took a second to think about it, and then estimated that there must be at least four people eating to require such a large amount of food. Too bad I was eating by myself. There's nothing like being made to feel like a fat bastard before dinner.

-I think all of the water/ice-in-door dispensers should be larger. Since my whole glass doesn't fit under there, I would say I wind up water my kitchen floor at least as often as I get a nearly-full glass of water.

Anxious?

The biggest question I have gotten the past few days is "Are you anxious about surgery?"

Very simply put - no, I am not.

I feel I will be in very capable hands and I have a few hundred or so people praying... so what is there to be anxious or nervous about? I can say that i'm dreading the stupid IV in my hand because that isn't very pleasant but i'm not worried about the pain of my surgery site. I'm also not looking forward to being hooked up everywhere so it takes 20 minutes to get unhooked just to go to the bathroom but I became a pro at that the last time around and can cut 10 minutes from that time! ;o) The next week or two will not be very fun that's for sure but I know I will be surrounded by friends and family so the time will pass quickly.

So what did I do tonight to get prepared? I kept busy by finishing up cleaning my house. Everything is put away, dusted, vacuumed... when my house is clean and things are tidy, I feel calmer so it was important to have this done before surgery. I have the dishes scheduled to wash overnight, I took out the trash, I packed a bag to bring to the hospital and laid out my clothes (ok that may sound dumb but i'm getting up at 4:30am). I firmed up plans with my mom about the pickup time tomorrow morning and learned a private room has my name on it (thanks AP!).

So right now i'm finishing up some email, writing in my blog, eating a frozen strawberry fruit bar, and drinking some water. I have 2 more hours to eat/drink all I like before not eating solids again until Wed so I may have to find another snack! After I log off, i'm planning on reading a little of My Sister's Keeper and then trying to fall asleep early.

Tomorrow morning my alarm will ring at 4:30a and i'm sure I will hit snooze a few times before getting into the shower. Then getting the last minute things in my bag, feeding the cats, making my bed, pulling some reports for work and then heading to the hospital at 6:20am. I have to be there by 6:55am and surgery is at 8:55am (weird times i know!). Then its off to lala land while they take out the rest of my thyroid and then a lovely stay overnight at the hospital. I will be back home Wed sometime and will hopefully post an update then... don't plan on an update the day of surgery because i'm not confident in my writing ability while on morphine!

That's about it... chat at ya in a couple days!

Quick Update

Still waiting on results of the mammo. If i get a phone call today or tomorrow that is not good news... if I get a letter in the mail by sometime next week, that means all is normal. I'm hoping I get the letter before my completion surgery on Tuesday so I have at least a little time to enjoy the negative films!

Other than that... trying to get things wrapped up at work and taken care of at home before being off for the next 6 weeks or so.

Work has been absolutely crazy lately because we've been working through a "shared service" arrangement with our downtown group. Basically this means integrating my department with downtown's coding department. It was a loooong period of discussion where I wanted to make sure that we would all have jobs and that the transition would be mostly smooth for everyone. I was sure that my girls would all have jobs but was actually more concerned they would cut out my management position for a while! Talk about anxiety... going through cancer treatments and worrying about loss of income and benefits! Thankfully we are all keeping our jobs and I will not be transitioning until after I get back from my surgical leave so it doesn't disrupt any of my benefit coverage. Again thankful that I work for a great company with wonderful people! We have our full info/paperwork meeting this Friday so it will be interesting to see the new compensation packages offered... Then during all of this we have 2 audits going on - barf! These are the least favorite part of my job! I hate having to defend WHY we coded a patient a certain way because sometimes things are subjective and always there are thousands of rules to remember. I'm getting things done before I go so I don't worry while i'm off and i'm trying to set up my girls with a solid plan so they aren't so disrupted by my absence. Right now there aren't enough hours in the work day and i can't stay over because of the hours i need to use in my personal day! I'm excited for the surprise potluck the girls have planned for tomorrow to wish me good luck...at least i think it was supposed to be a surprise! Oops! LOL

So on to everything else i need to get done... I did laundry this past weekend (had to after not doing it for 3 wks!) but I still have to put it away - UGH! I need to unload/load/run the dishwasher, clean out the fridge, dust, vac, and just put everything away. If I don't get this done before surgery it won't be the end of the world but it will drive me nuts when i can do nothing but sit and stare at it all day! I also want to make a list of the books I have to read and decide what order i'm going to read them in... i think i have 20 or so in the lineup. I need to get my pics printed from 3 Day 2008 so I can work on my scrapbook when i'm bored or can't concentrate to read. I need to find some LID compatible recipes for bread and pasta sauces so I can find people to make me some ;) Oh and I have to get a water filter, yoga DVD (know any easy ones?), and thermometer! I will probably have some paperwork for the merger mentioned above to complete. Oh and this weekend I have a meeting at Gilda's Club, a wedding shower out of town, church... Monday i'm actually working but may decide to work from home so I can cut out my hour drive and work on my to do list instead. Everyone thinks i'm nuts for working on Monday but if my first day of my surgery leave is the day I stay overnight in the hospital, I don't have to use 40hrs of my PTO before my leave pay kicks in - crazy!

So that's basically the peek into my mind at the moment... i'm a bit scattered so i'm sure this post reads that way too! Any suggestions/thoughts/comments on any of the above?

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?

On The Books...

So after trying to figure out my schedule this fall and speculating on surgery, hypo, and radiation dates, I talked with mom and she said it would be a good idea to call the Surgeon's office and get my surgery on the books now. [She schedules the patients in her office all the time and knows how hard it can be to get appointments] So we called and talked with the surgery scheduler there and asked what she thought. She said it couldn't hurt to get it scheduled and that we could always change it later if we needed. Sooo I'm scheduled to have my completion thyroidectomy on Tuesday September 1st. I should know more about times and such after my next appointment with Surgeon on August 10th.

Pancakes Make Everything Better

My mom and I went to my big doctor's appointment today.

For those of you out of the loop a bit - it was my first appointment since finding out I have cancer and the appointment at which we would discuss further actions.

In the nearly 3 weeks since getting my diagnosis by phone call, I have been researching thyroid cancer and in the week since I got copies of my path reports, i've been researching my specific type of thyroid cancer. So I walked in with my notebook of information and my list of 20 or so questions to ask. The doctor started out by telling us his thoughts and assesment on things and then let me ask my questions...

The biggest question I had was "what size was my tumor?" The path report does not mention a size which is slightly odd [but all of this has been] and so he called the pathologist who was miraculously on duty right before the holiday. She said they couldn't define a size really - I could have had cancer first and a cyst grew around it which spread the cells out or the cyst grew first and the cancer cells developed all over the lining. Either way she didn't think if you put all the cancerous cells together that it would be much more than 1/2cm. He asked her if she thought they got it all and what she would do if it was her body they were talking about and she said "I would want the rest of the thyroid out."

He then said to us that yes, with me being 30 and having a very long time for a chance of any remaining cancer cells growing and spreading that he thinks taking the other half out was a good idea but the decision was ultimately up to me. With everything I've read [estimated 80% have cancer in both lobes of the thyroid], I knew going into the appointment that I wanted to do everything to get it all out.

I need 3-6mos to heal from my prior surgery so we are looking at early September for the thyroidectomy completion. Four weeks after that I will have a whole body scan with a small amount of radioactive iodine to check for remaining thyroid cells in my body. And a few weeks after that we are planning on a large dose of radioactive iodine to kill off any remaining thyroid cells. I will have to be in "isolation" for a week because I will be radioactive and will leave traces of radiation on whatever I touch. Isolation means total isolation for 24-48hrs where no one is allowed in the room, then pretty much total isolation for about a week to ten days after that with minimal contact with adults and still no contact with children. Well I have 2 cats and have heard horror stories of pets getting radiation poisoning from their owners so i'm considering a hotel for the week if i can scrounge up the money! After that I will need blood tests and scans periodically to check for recurrence. Starting tomorrow I will be on thyroid hormone medication for the rest of my life to supress recurrence and keep my body functioning.

If all goes well, by Christmas of this year I should be able to say that I'm "cured". [correction: in remission, "cured" means no trace of the disease for 5yrs]

After all that news, mom and I went out for pancakes.

Post Surgery Update (may be TMI for some people)

So surgery was Tuesday morning at 7:30am..had to be at the hospital at the lovely hour of 5:30am... But they have valet (no i didn't drive) and I didn't have to do my hair or pick out an outfit so it really wasn't all that bad. Plus I got to go back to sleep! ;o)

Anywho, I apaprently shared too much during my pre-encounter call (nurse calls, gets your history and current stats before surgery) because everyone (nurses, doctors, interns) thought that it was hilarous that my nodule/mass thingy had the lovely nickname of "Bob." A bit of a backstory there...my lovely brother-in-law said i had a baby in my neck and my lovely sister decided to name it Bob... well i told the pre-encounter nurse that i was looking forward to "Bob" coming out! Hey, she caught me on my last day of work (Friday no less) and in the middle of an intensive audit prep/clinical documentation training session! It was a moment of slap-happy weakness.

So back to the details... I was prepped for surgery which included getting into my new, cool hospital style dress/shirt and an IV in my hand and talked with my surgeon, anesthesiologist, senior resident and the med student assigned to my case. Just after 7:30am i was rolled into the surgical suite, had a mask put on my face and some "calming meds" put into my IV and thats the last I remember until about 11:30am.

I woke up in the recovery room freezing to death (I was shaking) with a nurse that wanted me to tell her the number of my pain...yeah my throat felt like it was on fire except for the ice pack on my neck and I just wanted to go back to sleep! I got some morphine shots and warm blankets and then I remember my mom coming in to help wake me up. Then i was wheeled past my dad and A.Pam and maybe another person or two (?) and into my lovely private room overlooking the new children's hospital and downtown GR (I had 2 windows- Thanks A.Pat!). The next few hours are a bit blurry - I had several visitors including mom, dad, A.Pam, Pastor Rick, Gpa, A.Pat, Mayme, KT, Brian, doctors, interns, nurses, techs... At this point they were giving me dilaudid and ice packs so I was just out for the count. I had a few ice chips, and by the time evening rolled around I was upgraded to Jello and chicken broth. I was also unhooking myself of the leg circulation machine and BP machine to get up to the restroom so I could rid myself of the betadine beard I had aquired.

I had also learned that once they got in there to look around, they found my nodule/mass thingy had ruptured at some point which made it stick to other essential items in the neck. (fantastic) They had to scrape it from the other structures including my laryngeal nerve (the one that controls the voice) so basically things were very inflamed and angry in there. Good news is that the frozen section biopsy looked good and they only ended up doing a partial thyroidectomy.

The next morning I was visited by the med student at 5am - she asked me a lot of really dumb questions for that time in the morning. Then the resident visited at about 6:30am to rip off the bandage over my incision and she wrote orders that I could try real food (YAY!). I was promptly given a menu that I could order my "room service" from LOL - totally not lying on that one! I ordered a fruit and yogurt parfait which was very yummy and was working on some apple juice and cream of wheat when my surgeon came in and wrote the order that I could go home! (another YAY!) So i said goodbye to my absolutely fabulous nurses and was wheeled to the parking structure while my mom got the car.

While waiting there in all my dirty hair/no makeup/bandaged glory, I see some of the big-wigs from the hospital pass me and hope they don't recognize me... then the president of the 2 hospitals I manage for came strolling by and said hello. I think he only had a vauge recognition... at least i hope!?

So home I was and feeling pretty good overall. I made it up the 2 flights of stairs into my apartment, was continuing on some solid foods, was taking my vicodin and putting the ice packs on my incision... was still a bit in and out of things and fell asleep while my mom was trying to talk to me about a movie we were watching (sorry!). Grandpa and dad came over for dinner and I was feeling pretty good so I took my pain meds, put an ice pack on my neck and decided to turn in for the night. Well about 3:30 am I woke up and had that horrible feeling that I was going to be sick. I ran to the bathroom and was immediately and violently sick... this was my worst nightmare come to life! My mom came running from the guest room saying things like "oh no!" and "take a deep breath!" I felt like i was going to die as I tried to hold my head on my neck in a stationary position so I would not rip out my stitches. Seriously - I have a gash across the front of my neck and now i'm so sick that I feel like my head is going to detach from my body - it was horrible!! And then it was over and I felt remarkably better (well in loads of pain but not like i was going to be sick again) and I crawled back into bed where Moses Jean put her paw on my arm and I drifted back to sleep... only to wake up about a half hour later to repeat the whole thing! This continued every 15-30mins or so until my mom called my dad to bring some Phenergan from their house... when he arrived at oh maybe 7:30ish I was in a down time but waited to take the meds until i was sick again so it would stay down and work for a bit. I took the meds and drifted to sleep hoping to not wake up for quite a while but I woke up again about a half hour later, sick once again. By this time my mom was calling her work to say she wouldn't be in and calling the surgeon's office and was (I think - i was a bit delerious) making plans to get me in the car to ER. Well thankfully after that last bout I drifted to sleep and stayed that way until about 2pm...

Of course when i woke up I felt like heck and was back on liquids and jello once again. I gradually took some tea and toast and then actually had real food for dinner... but avoided the vicodin completely because that's what was deemed the cause by my surgeon. Vicodin is EVIL!! So I went to bed Thursday night with some dread but ended up sleeping fairly well with no repeat of the previous night's nightmare. (YAY!)

Today I was feeling better but still a bit weak... just a bit bored because I only got 1 phone call of the millions promised (my mom had enlisted a bunch of people to check up..apparently they aren't good babysitters!). I did get caught up on my Gilmore Girls episodes and a couple movies and read an entire book (chick lit but still over 500 pages) and now i'm on the internet for the first time in a couple days :) Aren't you so lucky?

I really appreciate all the thoughts and prayers...keep em coming as the surgeon says it will be months before i'm able to raise my voice or attempt to sing even one note. My neck is still swollen and I have a nasty looking incision (ala Sweeny Todd) but if you can stand it, visitors are welcome. Otherwise keep sending your love via internet so i have something to do for the next week of recovery! :)

Surgeon's Hands...

Just got back from Surgeon's office...

Started out with a general exam where he explained that I would most likely need surgery because of the size of the nodule and then a detailed explanation of thyroid cancer and its survival rates for people like me (under 50yrs and in good health and a woman - generally live longer than the normal population after treatment!). Yikes - uhm could this really be a possibility?!

Then we moved into the ultrasound suite where he did the u/s himself - said whoa a couple times then said I have "good news and bad news" and then showed mom and I what he was looking at... a massive nodule (over 3cms) on my left thyroid lobe that is compressing my carotid artery, my trachea (windpipe), and my esophagus (food tube) as well as the nerve that controls my vocal cords.

Good news: its most likely benign because it is mostly cystic and calcified parts
Bad news: it requires surgery

Because of its size it will most likely not respond to just taking synthroid (thyroid hormone pill) to shrink it and like i said its pressing on some pretty vital parts! Then he said he wanted to do the biopsy to be sure of things because if it is malignant then they will do a thyroidectomy instead of a lobectomy (take the whole thyroid out instead of just the left lobe of it) when they do surgery.

So had the biopsy - long tiny needle was stuck into my neck a few times after they numbed it with lido. It only hurt a little and still hurts only a little but that's kinda been my norm for a week or so. They are sending it out for pathology and cytology results and we should know benign/malignant by mid next week.

My surgery is scheduled for May 26th (day after memorial day) and I have to be in the hospital overnight. They do that because they want to make sure the airway wasn't compromised and I don't develop any complications. I will be off work the rest of that week and the following week to recover because apparently the thyroid is an extremely vascular structure in the body. I won't be able to talk much at first and will have some voice problems for a while because they have to inject a nerve stimulating substance into the nerve that controls my vocal cords to make sure they can see it during surgery and not cut it - he said it usually affects the singing voice more than the speaking voice so i'm off singing for quite a while too...

So that's as much as I know at this point... going to take it easy for a couple days sporting my new fashion accessory (small round neck band aid) and then try to sort things out and prep for surgery.