Birthday Update: Four Months!

Ok so this is a few days after Miss M’s birthday but I wanted to wait until after our doctor appointment today!  See? I didn’t forget you all!  So what has little miss been up to?

Birth Deets: 21.5in, 8lbs 12oz 
2month Deets: 11lbs 13oz, 23.5 inches
Height: 24.8 inches
Weight: 14lbs 2oz
Nicknames: Maddie, Miss Me, Bay, babydoll
Exciting Events: Miss M had her very first Halloween!  She went dressed as a zebra one day and a ballerina the next and came home with a very impressive haul for mommy and daddy! Lots of suckers in that haul but hey, we aren’t complaining!  She also went on a trip to Pigeon Forge, TN and ate at Joe’s Crab Shack… well mommy and daddy did.  And probably the biggest thing that happened is… mommy went back to work and little miss is playing with her Grandparents 3 days a week.  More on that…
What She Does: She’s still no longer sleeping through the night and mommy is sleep deprived some nights are a bit rough. Ok, we’ve had it easy up until now and have stocked up on solid 6+ hour stretches of sleep since she was about 6 weeks old but they aren’t kidding when they talk about the Four Month Wakeful Period! She is back to waking up 2-3 times a night for the past couple weeks.  She still prefers standing over sitting, however, she is now able to sit up unassisted for perhaps 5-10 seconds before her noggin topples her over.  We shall soon have a sitter on our hands folks! She always has her hands in her mouth and the drooling is positively disgusting.  Yes, we think she’s working on those little teefers in there!  She will still talk your ear off and this month we have had the joy of hearing her laughing.  It is perhaps the best of her sounds so far.  We hear it most often when she is being tickled or when we are dancing and singing the “no pants dance” or “all the single babies”… songs mommy made up for Maddie’s silly pleasure. She also now cries for me by name… “mama…waaaaahhh….mama…waaaahhhh…mama….” oh joy! 

Wake Up!

Things around the blog have been quiet for the last few weeks months… I can give you a hundred and one excuses as to why but the biggest one… I’ve felt like I’ve been in a fog, almost like I’ve been asleep, for quite a while now.

Between traveling 20+ days out of every month, to planning a wedding from thousands of miles away, to having a cancer recurrence scare… some days it was all just too much. Not to mention I spend 10-12hrs a day working on a computer so some days the last thing I want to do is stare at a computer screen for “fun.”

Being on the go for so long has zapped me of my energy. And my creativity. But slowly I can feel it coming back…

I’ve started working from home which is a HUGE change but I can already tell it’s going to be great!  Meaning no more getting up before dawn to catch a hotel breakfast and shuttle to work 10+ hrs and wait for a shuttle back for a hotel dinner and an empty room. No more weekly trips in and out of airports with baggage fees, layovers, and delays…

I am starting to feel like myself… I’m eating better, sleeping better, and starting to enjoy life again. Shoot, I’m having a life again. I wouldn’t change the last 8-10 months a bit though.  I’ve learned a lot and met some great people. I got engaged for goodness sakes!  What’s not to love about that?

I’m hoping that as things get back to a more “normal” state around here I have all kinds of creative moments to share with y’all.  I guess you should just stick around and see!

Some Down Time

Since this journey began over 5 months ago I don’t think I've ever asked the question “why me?” [If i have in a previous post, I blame the brain fog] I’m still not asking that question, but I am going to pull my cancer card [read: get out of jail free for just about anything card] and say I have a right to feel down about things. Sorry if this comes as a shock to those who have been so encouraging to me or who have said they are amazed by my positive outlook. I can only say that I am human… and hypothyroid… therefore, I am prone to the occasional mood swing now and again.

What brings this on now you ask? I really don’t have a good answer for that. I know that my life has basically been on pause since May and I barely register that we are only 2 weeks out from Halloween. Moreover, in the last 5 months I've been living and breathing Cancer World. Not Sassy Vibrant Young Carefree 30-Something World. I’ve felt weak, sick, diseased, isolated, alone… While the people around me have gotten pregnant, married, engaged, changed jobs, bought houses… basically moved forward in their lives.

I was told that getting cancer was just a speed bump in life. [which is probably true in the overall grand scheme of things] Right now it just feels more like I’ve come to a washout in the road and everyone else is on the other side.

Longing…

A friend of mine recently went on vacation to one of my most favorite places in the world. Pigeon Forge/Gatlinburg, TN. If you have been there, you know what a tourist trap this place can, especially during the summer months. Its home to DollyWood, Dixie Stampede, the Ripley’s attractions, country themed wedding chapels ‘ala Vegas, gem mining, and mini golf among other things. But it is also at the foot [or middle depending on which city] of the Smokey Mountains National Park which is so incredibly beautiful. I love all of it mixed together. Yes, even the funnel cakes. I even convinced KT & Brian to go there on their honeymoon and played travel agent! [not sure they recommend me as travel agent… long story!]

I love the mountain cabin rentals that include awesome views, fireplaces, hot tubs, pool tables… and i love hiking through the park to see rapids and waterfalls and old mountain settlements not to mention the random deer & bears! Its the first place I think of going whenever I need peace and rejuvenation. Hence why I'm longing to go there now [and the teensiest bit envious of my friend who just returned]. Sigh… It will have to wait until next year so until then I have to settle for old vacation pics!

Enjoy… you just may want to plan a trip for yourself ;o)

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.

Sigh…

Today was my 1month post-surgical check.  He liked the way my scar was looking [much better than the 1st surgery] but said it will probably get pinker before it starts to fade.  AOK with me - ‘tis turtleneck and sweater season after all!  I told him about my experience with the RAI and he seems to be the only Dr that wasn’t surprised to hear of the “no side effects” side effects.  I am scheduled for a whole body scan tomorrow morning and he said I can call him next week for the results.  He also said I need to come back in another 6 weeks for a follow-up and another neck ultrasound and that we will check my labs again to make sure my meds are the correct dose.  He also said I don’t have to keep taking my calcium supplements much longer.  Right now I'm on 1 Tums twice a day.  If you remember, I started out at 2 Tums 4 times a day after surgery because of injury to my parathyroids.

So then we turned to the topic of when I can go back to work.  I said I was thinking that after 2 weeks of being back on my thyroid meds, I should be good to go.  Dr seemed a bit hesitant and said I would still be exhausted and coming out of hypo hell at that point because my TSH is extremely high.  I bargained with him and said I could work from home when I was feeling the exhaustion and he agreed to write me the note!  So I'm set to return on October 19th as I originally planned! 

Here comes the sigh…SIGH…

If you have seen me over the last year, you know that last year I worked very hard to lose 25-30lbs over the summer.  I was feeling better than I had in a few years [aside from unexplained thyroid symptoms].  Over the holidays and such I had gained back 5-10lbs but still felt really good.

Before	After

Well since the start of this whole thyroid cancer mess in May, I have successfully gained back all but 5-10 of those hard lost pounds. What really sucks is in just one week before my RAI, I gained 10lbs!!!  Seriously?!  At that point I was eating less than 1,000 calories a day. Basically my TSH went so high that my metabolism became non-existent and all of my body functions slowed to a ridiculous point.  There were days when I didn’t even feel hungry because what I ate the day before was still there.  Yes, some of it is water retention and swelling from surgery, hypo hell, and RAI and when my TSH gets back to "normal” my metabolism will return to “normal.”  But you can bet your bippy the weight isn’t just going to magically fall off. [Another thing to liken to pregnancy?] I know that I can lose it again but I also know it is going to be a long, slow climb back to “normal.”  Thank God I haven’t sold/donated any of my bigger clothes yet!

The Doctors Say…

There are no side effects to taking this radioactive pill into my body… apparently they have never taken it themselves. 

I took my scan dose of radiation this morning and they had to give it to me in 4 pills!  They explained they had to give me the pediatric dose pills because they have had trouble getting the adult doses.  They used to get this from Canada but their nuke plant has been down for the last 6mos so they now have to get it from a plant in South Africa… I’m thinking is this stuff that dangerous that we don’t even make it on US soil!?  Apparently, yes.

So I took my pills like a trooper and I swear, even if the pills have no affect on normal people they completely enhance the effects of hypothyroidism.  Since taking them, I've been nauseous, feel extremely weak, fatigued and headachy, and absolutely cannot get warm. 

My hands, nose, and feet are literally like ice cubes and everything else is covered with 2-3 layers of clothing as well as 2 blankets!  I know I need to try to eat something solid but I barely got down a small bottle of organic fruit smoothie (yay for getting 3.75 servings of fruit/veg!) and frankly, being on the LID leaves little appetizing options that don’t take long to prep.  Right now my best options are air popped popcorn with no butter and a small amount of non-iodized salt or organic unsalted brown rice cakes with natural, unsalted peanut butter and banana slices.  Yummy. I’m thinking I should go with the rice cakes because the PB would give me some protein and the ‘nana would get me to almost 5 fruit/veg servings for the day.

Anyway, trying to muster up the strength to make some food and pack for my isolation location.  I’ve pretty much slept all day and will most likely eat and then sleep again for a while so maybe I can pack during the commercials of Glee, Mercy, Toddlers & Tiaras… and whatever other shows I'm DVR-ing tonight ;o)

A Little Sleep Please?

The past couple days have been pretty bad for me… I find that I'm not feeling very cheery at all and am welcoming the cloudy skies (hoping for some storms soon!) because they match my mood perfectly. 

I am in a state of extreme fatigue, as most of you have probably gathered, but have been finding it increasingly hard to sleep. 

This is what my nights are like: finally fall asleep between midnight and 1am, wake up between 3-4am and stay awake for about an hour or so, fall asleep again between 4-5am, wake up between 7-8am and then I give up on trying to go back to sleep.  I know I'm not getting enough sleep, sometimes I am able to take a nap during the day which helps some but is still only an hour or so at a time.  Well after a few days of sleeping like this, then I seem to crash and can do nothing but sleep.  Its getting ridiculous!

At some point I thought I had read something about insomnia being linked to a hypothyroid state but of course now can’t find it… I do have references that state when you are hypothyroid you are unable to reach “stage 4” sleep, the deepest, most restful level of sleep which only contributes to the fatigue.  Could explain why I haven’t dreamt in years except on rare occasions?

I’ve also been in pain pretty much constantly for the past couple days.  I try to ignore it all day but last night it was too much so I took some motrin and just curled up into a ball.  This morning is pretty much the same as last night.  I feel like I have arthritis or something and feel like jumping out of my skin. Its superfun.

I can’t wait until this is all over!

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!

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!

Outtie

ps – i’m heading out tomorrow morning for a Cancer Retreat at Camp Geneva on the shores of Lake Michigan. I won’t be posting until I get back (Sunday) but i’m sure to have some fun stories!

Hello Blister, I've Missed You!

Went walking for the first time in months with Lindsay, Vanessa, & Heidi. My trusty blister "squirt" decided to show up for the occasion too!

I don't know how to express how good it felt to finally have a day where my energy level felt like it was back to normal! It has been so frustrating wanting to do what used to be no big deal, to plan on doing it, only to find that by 3pm I can hardly think straight because the extreme exhaustion has set in. Most nights I drive home from work and pass out on the couch while trying to muster up enough energy to get up and check things off my to-do list...

I'm sure friends are sick of my backing out at the last minute but I hope they understand that I just can't do it. I really want to be out there with them doing things that were normal for me once upon a time. I hope that in 6mos my energy returns and training next year will be no big deal...

And so it begins...

It was moving day! I was so exhausted i couldn't haul another box up the 3 flights of stairs to my door. Chalk it up to a whirlwind week of packing, stressful meetings at work, terribly little sleep and an even worse diet - right? As i hauled my booty out of bed to unpack the maze of boxes, i brushed off the exhaustion and the aching muscles and got to work. By the end of the weekend I had unpacked nearly everything and the place was starting to feel like home!

On Monday i was back to work shrugging off the muscle pains and popping motrin here and there to keep moving. During a lull in the action i decided a mini neck massage would work wonders... wait...what was that?! There was a painful bulge in my neck just above my collar bone...this is totally not normal! Could i have pulled a muscle in my neck somehow causing it to want to shoot out of my neck?! I called my mom [and my own personal nurse] with a mini freak-out. She assured me that i was over reacting and that she was sure i was fine... maybe i had caught a 'bug' and my lymph nodes were swollen... ok sure, she would stop by tonight and check it out only to prove i was a nutjob.

So she came over and her reaction was more of the 'what the heck IS that?' than 'yup, you just got a bug' variety. After some discussion it was decided that if it didn't go down/stop hurting/stop half choking me when i ate by Tuesday, I would call the doctor.

Now my doctor is fabulous, he is super funny, laid back, super smart, and doesn't mess around...which is why he is always so stinkin busy! I was told he was booked but that I could head over to Urgent Care to be checked if i thought it was necessary. Well by this point i had looked up my symptoms on WebMD and decided that i had some extremely rare disorder so of course i headed to the UC. In the waiting room i watched the swine flu epidemic unfold while anxiously awaiting my name. I was called back, my vitals were taken and soon a lovely MD was in to see me. He took a look and had me swallow while pressing on the lump [not comfortable at ALL mind you!] and quickly ordered me an EKG, xray and lab tests. Apparently my heart rate was over 100 resting which is not good and is ridiculously high for me, hence the EKG. The xray and lab work covered everything else. Oh yeah and at that point he also said 'You most likely need a biopsy of your thyroid and should follow-up with your doctor in 1-2 days.' Uhm....

In my world, biopsy = not good. My grandparents, dad, aunt... all had biopsies...all had cancer.

So i called my most wonderful doctor again and was able to squeeze an appointment into his day off [i wasn't the only patient he saw that day..i told you he is fabulous!]. He took a look and had me do the swallow while pressing thing too - again not fun - and said i needed to talk to Surgeon and he will most likely do a biopsy of my thyroid nodule. Ok so it now has an official name i could Google! Dangerous.