We're Expecting a Baby

That's right!  It's very early still and all I know is that I should be due in June (basic math)... but I haven't seen the doctor that gives us the date.  I've seen the "the lab tells us you're pregnant" doctor, as well as "we're going to have to watch your thyroid levels very carefully" doctor, but not the "this is how your baby is doing" doctor... but I have an appointment.

So in keeping with blogging tradition I shall post the home pregnancy test photo.  I know some folks think it's gross-- whatever-- for me it's the first tangible reason for why I've been sick for weeks.

Don't Mess With My Meds!

I should have been for protective, but I didn't know what would happen.  My doctor had me do some blood work to check my thyroid levels.  The nurse practioner called to tell me that my levels where on the high side (which is what the blood work said) and that she would like to prescribe a slightly lower dose of my hormone replacement.  

"Sure" I said... like an idiot.

For each of my thyroid scans I had to go off my replacements completely and during that process I felt mostly fine so my reasoning lead me to believe that just a mere decrease of a mere 25 mg would be hardly perceivable.

Wrong.  Very Wrong.

Now it wasn't all that bad.  The thing about these hormone replacements is that they are long acting.  A change in dose takes a whole six weeks to take full effect.  This can be a very good thing, say, if I forget to take my pill one day it won't make me crash-- that's a very good thing.  But about three weeks after taking the new slightly lower dose I started to drag and it took me a few days to realize why.  But I would have to wait another three weeks before my next round of blood work to show that this was bad and that it needed to be fixed, which I did.

This was a new experience for me.  I've felt tired before, but not like this.  I've been lazy before, yet this was different.  Tired, but not sleepy, and sleep didn't make me less tired.  I faked it, I did what I needed to do and even some things that I just wanted to do when I was coasting on the fake mustered energy.  That actually helped a little, it felt good to get some things done but I would pay for it later in extra tiredness.  I made it a point to get up and still do things.  I know sometimes acting tired or lazy can cause additional tiredness or laziness.  It's an odd sensation to just 'run out of gas' especially when I wasn't trying to do anything extraordinary or physically demanding.  After a while it just got frustrating.  Immensely frustrating.

It was finally time to do blood work again.  The next day I started taking my old pills because at that point I didn't care what the results would say, I concluded the experiment was a failure.  Typically the nurse practitioner calls me the day after I receive my copy of the lab results to make further adjustments.  When no call came that week I made an appointment.  

During the appointment she said that my numbers looked fine and I'm grateful that when I told her that the new dose wasn't working for me and that I felt normal with my old dose she agreed to write a new prescription for my old dose.  Funny, I was half-expecting her to say 'well you're numbers say you're fine' and leave it at that-- not because of my interactions with her in the past but just because I know that medical professionals can do that sometimes.  I was prepared to get defensive... I'm glad that was not necessary... I didn't want to hurt her.

About three weeks after that (long acting is also code for slow acting) I started to feel a slight improvement.  I'm now feeling pretty normal and getting back into the usual swing of things.

yay!

Clear Scan #2

Very good news! My thyroid scan went very well. I needed two clear scans in a row and that what we got! So now I am finished with thyroid scans and getting radioactive every six months-- I won't miss that at all... well... playing with the giegercounter was fun, and being called 'hot' and we were able to make a lot of jokes about it... But this is a good thing and six months from now will be much more fun than getting ready for another scan!

Also I never crashed off my hormones like I was told to expect. I caught a cold and so I had a sore throat and a cough which was no fun but nothing like the horror stories I've heard. It got to the point that Dennis decided that apparently I do not need a thyroid and that thyroids are surprisingly optional. Which is fun to joke about (I had thoughts of making a "thyroid optional" t-shirt to wear to my scan) but I feel the need to give credit where credit is due.

Since this is a public blog I will keep it brief. At the beginning of all this, before the surgery, I received a priesthood blessing (it's a very awesome Mormon thing... if you have questions about it let me know and we can talk about it). It was a powerful experience in which I was told that I would be alright and that I would have strength. I truly believe this made the difference, why the doctor would look at my blood work numbers and tell me I should be feeling sick.

I am Grateful.

...and radioactive...

Thyroid Scan

Last week I had a thyroid scan and was completely expecting to find that there were still thyroid cells. I had good reason to believe such because I've been feeling exceptionally well while being off of my replacement hormones-- which is exactly what happened last time. I felt tired for about two days but then a felt a wind of energy and decided to go with it. During that time we planted our garden (more on that later) and I got things done.

Much to my surprise the scan came back negative! WooHoo! Below you will find a visual comparison between my first scan and my most recent scan. The scan detects the radioactive iodine I ingested two days prior.



See how in November there is a very very bright bean shape in my neck and how there is absolutely NO bean in my neck in May? It is, you may notice, more concentrated in my stomach and bladder (again, a good thing meaning the radioactive iodine is just on it way through and not getting absorbed anywhere). What a difference 100 millicuries can make!

We are very happy about this! We will do another scan in January or February and if that one comes back negative as well then we will be completely finished with these scans... which will be fantastic-- even though these scans have been entertaining I'd be just fine not having them be a regular part of life!

yippee!

The New Start on My Day

Everyday an hour before breakfast I take my generic synthroid. I've been at it for a few months and I will be at it for the rest of my life so it's good it's not too annoying and it's good that the pills are tiny and as cute as pills can be. Cute always helps!

The top is a representative of the pills they started me on after my first scan. The little blue one is the higher dose they started me last month. In March I get to do more blood work to check my levels and there may be another adjustment after that. Thyroid medications take six weeks to show their full effect so it can take a while to find my ideal dose. I'm pretty happy with what I have-- the blue ones are so cute! I'll take an increase if it's recommended and wonder what color it will be.

A nice thing about these adjustments is that it allows me the opportunity to build something of a stash since the insurance does not allow me to get more than a 30 day supply at a time. This way I can have some put away in our 72 hour kits (the ones I still have to assemble) and know that I'll be covered just in case-- I'm okay with having an out of date dose in an emergency. It's strange to think this way-- all worst case scenario governmental collapse and such but I find it's part of living with a dependency-- I need these pills-- I will die without them. How many things can you say that about and mean it very literally? At times it's still hard to wrap my brain around this concept when I stop to think about it.

I'm positive I'll get completely used to it. Cute always helps!

Geiger Counter Fun

At first it sounded like we had crickets in our house... occasional little chirps. Then it abruptly sounded like we had several very angry crickets...

"That was your toothbrush." Dennis called from the bathroom.

Really what's the point of being radioactive if I don't get to play with a geiger counter? Well, to be honest I don't get to play with it much of course because being the source of the radioactivity makes impossible to measure anything else accurately. But others get to play so that's fun... except when I can't be in the same room... but when they provide a nice narrative of what they're scanning and how it's reading (we turned the beeping off after not too long-- when I got close it turned into one solid, very shrill, beep).


It was fun-- thanks Honey-- and educational! I learned a lot more about radioactivity because of all this.

taken this morning almost 48 hours after dose
set on the second to least sensitive setting, measuring the I-131 that is "sticking"

We went in for the scan at the hospital on the 5th. When we met with the doctors to review the results they asked how I was feeling and I told them that I was feeling quite well.

"Any guesses as to why that is?" surprisingly sarcastic for an oncologist.

We suspected as much when the scan was days away and I wasn't feeling exhausted-- there were a lot of thyroid cells left over and the little over achieving stragglers where producing enough hormones to keep me functional and feeling fine.

It kind of makes me sad to kill them -- very cruel but then I remember that (collectively) they fired the the first shot and that this is no time to get soft.

My dose of radioactive iodine [100 millicuries (mCi) of Iodine-131] was ready for me the next day. It has a half-life of 8 days and comes with restrictions to protect others, namely, Dennis.

To keep the loved ones safe it comes down to Proximity, Time, and Hygiene.

Here is my brief science lesson some of which I actually remember learning in high school:

There are lots of types of radiation (notably from the sun etc.). Like light and heat, the closer you are to the source the more potent it is.

Unlike light waves radioactive waves can travel through things including people --this is what we're trying to limit because as it's passing through it can damage one's molecules along the way which can have an accumulative effect of being bad.

Different radioactive particles/wave types have different strengths. I'm sending out beta (kind of a sissy) and gamma (more of a school yard bully, not a real thug) both of which drop off in strength significantly with distance. **Dennis noted different ways of personifying these particles. That the beta particles are pretty big schoolyard bullies but they can't climb fences or run very far and thus not much of a threat once you're out of noogie distance. He then said that the gamma particles are like a pipsqueak with a B-B gun in that they can hit you from further away but the chances of it really hurting much is slim... especially the further away you are.**

To illustrate this the medical physicist measured me directly after taking the dose up close I measured at about 500, at three feet away I measured roughly at 75, and at six feet away I measured a 4. This shows why proximity (aka cuddling) is bad.

It also stands to reason why the amount of time someone spends in proximity makes a difference and why the restriction recommendation is to keep seven feet away from the people you see all time but they say I can go out in uncrowded public now that it's been a couple days. (keep in mind the rooms of our house are about nine feet in each direction, making it challenging to hang out even in the same room)

The third area of consideration is hygiene. I'm emitting radioactivity all the time but I'm also secreting it-- mostly through urine, then through mucus, then through saliva. In this way it's like the flu and obsessive hand washing really helps cut down on the creation of new radioactive surfaces. The couch where I've been sleeping had very little radioactivity but the waste basket containing my discarded tissues was on fire (I made it a point to discard all of my tissues in the same basket). And since my computer keyboard measured clean it shows I've been keeping on top of the hand washing.

Other odd precautions that make sense:

Flushing toilet several times after each use
keeping toothbrush completely segregated
using my own tube of toothpaste
making a few dinners ahead of time (just so Dennis doesn't have to after he gets home... although he is more than capable and willing)
covering my sleeping couch with blankets that can be easily washed once I get to move back to the bed.
having my own dishes and disposable flatware
my own box of tissues and waste basket
my own hand towel and segregated laundry
no kissing (bummer!)
no cuddles (total bummer!)

So yes it's very inconvenient and not very fun but before the week is through I'll be able to go about business as usual. I'm going to add extra time to the limitations because we know that there are a lot of thyroid cells that the I-131 is sticking to.

Questions? I might revise this when I re-read this tomorrow and give Dennis a chance to point out any glaring errors. The logical thing would be to hold off on pushing the publish button until then-- but it's late and I want to get this up.

Doing Well

We have been enjoying our visit with my husband's mother. Yesterday I took her to Old Town Lansing where we got to look at cute little shops and walk along the river. and for dinner we roasted a turkey and had biscuits and mashed potatoes along with some other goodies-- It's been great to have Lois with us-- we really like her! (I have some nice pictures of her, and I'm glad to have them but I think she would be happier if I didn't post them on the internet even though the pictures are nice and she looks very nice in them)

So far we've gotten out of house every day and I hope that will get to continue as this afternoon we sticking to rainy day activities-- because today it turned into a rainy day.

Rainy day activities have consisted of sewing and reading... but mostly sewing. Between the two of us over two days we've finished 5 quilt blocks which is pretty sweet as I have many more to do and it feels good to whittle down the number of unfinished blocks.

"But Kristen, where did these quilt blocks come from in the first place?"

I'm so glad you asked! These are all from 'quilt block of the month' programs-- which are very fun and get you to try new things. It basically works like this: your local quilt shop sells you a pattern and fabric to make one quilt block (about five bucks) with the idea that you come back the next month with that block completed to receive another pattern w/fabric which you finish and bring back the following month so in theory you can make 12 coordinated quilt blocks for $5. This is great and fun... and just the beginning. Once they get you in the store there are all sorts of things they sell at you (it's a store, I don't hold it against them, I just don't have the cash). The most common, aside from all the little things you can buy that do one thing really well, is the "finishing kit" which gives you instructions and fabric to turn your block into a quilt top-- these typically cost at least $60 (so I never buy them) which sometimes does not contain the batting backing or binding that you will also need to truly finish. They also get you with 'bonus blocks' which cost a little extra and often look so nice and if you don't complete your previous month's block then it will cost another $5 to start up again.

And then sometimes you can get behind (like me right now) because inevitably life gets in the way. This problem is compounded by the fact that I still have blocks to do from last year's block-of-the-month program in Sacramento that I didn't get to because we got married and moved out of state (but I still had very nice people pick up my blocks for me). It's fun to see how different shops run their block-of-the-month programs. All in all I'm having a good time of it and learning new things but will probably take next year off with the hopes of finishing some of these quilts.

Since this afternoon I've felt considerably tired... a little more than I think is normal. We'll see if this is the beginning of the downhill slope or just a lazy rainy day.

A Quick Update

In recent days I've had a slightly noticeable influx of "how are you feeling?" It's not bad to ask but it reminded me that perhaps I should give an update since it has been a little while.

I feel fine, quite normal, it might take me a little longer to get going in the morning-- but I think that that is really more of a motivation issue than a chemical imbalance issue. I usually have been getting my first wind around 1:30 or 2pm-- but other days when I know I have something with a deadline to do and somewhere to be I've been able to get up and at them without a problem-- so I'm being lazy lately.

I stop taking the temporary replacements on the 20th. This is also the same day that Dennis' mom, Lois, is coming for a visit. We're looking forward to that-- we'll see how my energy goes. I could see it going either way-- down because I'll loose thyroid hormones or level or up because we'll have out-of-town company and I like to have visitors! ... especially when they are nice like Lois!)

I'm reminded that life is good by times like yesterday morning I had a visit from a cardinal just outside our kitchen window. At that moment I was really glad I hadn't yet pack up the humming bird feeder. Perhaps there is something to be said for procrastination? no.

Time Line

This morning we met with the radiation oncologist for a consult and now we have a working time line for the first test to find straggling thyroid cells.

So I will continue to take my Cytomel (thyroid replacement hormone with short half-life) until the 20th of October (it's a Tuesday)... which means I have just under a month of feeling relatively well-- yay!

The Tuesday after that (the 27th) I get some lab work done and stop eating certain things and taking certain drugs (nothing I regularly consume was on those lists-- i.e. Slim-fast shakes).

On Monday the 2nd of November I do more blood work.

Then the next day (the third) I go to the center to take my little dose of radioactive iodine.

This allows us to do the scan on the 5th and review it with the oncologist. They say about 80% of patients still have thyroid cells on their first scan so I'm guessing I will too. If I do we will schedule a time when I can come back and get my big dose of radioactive iodine. They used to be able to give the big dose on the same day as the scan if needed but there is a shortage of radioactive iodine so I must wait until they have a pill for me. (they say it takes about a week)

After I take the big dose and live secluded for a few days I may start hormone replacements again-- yay!

So now you are updated! Thanks for reading.

New Update

We got back from the doctor's office with some news with which I am quite happy-- although not that much has changed.

First we have an appointment to see the radiation oncologist Wednesday morning (the very next happening Wednesday-- yay) and will find out more info about that process (how long will I be radioactive? will I leave something like a radioactive snail trail behind me? and important things like that)

Second and more exciting is that I got a prescription for a temporary hormone replacement. Here's the cool thing that I learned today:

Thyroid hormones have a pretty long half-life so it takes quite a while for them to naturally dissipate (about six weeks) taking the thyroid-less person on a slow gradual decline into a pit of despair. Where as this version of thyroid replacement has a short half-life so it dissipates roughly twice as fast as the stuff my thyroid left behind. So this is roughly how I think of it. This has no scientific bearing... it's just my current understanding.

The x axis is time in Weeks, the y axis is how I'm feeling (very measurable).
The red line is my perceived progression with taking the temporary hormone replacement, the blue line is my perceived natural progression.
The aqua shaded parfait illustrates bonus better feeling time, the brighter the better.

Hormone Dissipation: Feeling vs. Time

(channeling my father here)

So now I'm feeling just fine! It's nice to know that I can somewhat rely on feeling fine for a given time but there is still a lot that we'll just have to wait and see.

Pathology Report-- and the Envelope Please...

-














cancer

You know it's a bad sign when it's the day you're supposed hear back, it's 5:45 pm, the phone rings and it's not a nurse, it's your surgeon.


Cancer on both sides so it's good we took the whole thing out. Only one lesion was on the surface, the rest were safely tucked within the thyroid tissue. We have an appointment on Friday and will schedule a meeting with a radiation oncologist who will oversee my radioactive iodine treatments. It will be probably about six weeks before the first treatment because right now I still have thyroid hormones inside and they have to be completely gone before we send radioactive iodine after any rogue thyroid cells. And in a very brief description of the feeling of getting the thyroid hormone to zero my doctor said, "you'll be pretty miserable."


I'm going to ask for clarification on that.


It's been just under a month since Dennis and I celebrated our one year anniversary. I cannot help but liken this situation to when someone buys a new car or washing machine... as soon as the warranty expires ::poof:: the thing falls apart and you're just out of luck. Sorry Honey. And I bet it's even worse when you're still making payments! I told him that he should have gotten the extended warranty.


Even though we knew that the thyroid could contain cancer and the cancer has already been removed I'm surprised by how it feels, relating oneself to having cancer. I think it's a very loaded word, perhaps because it runs in my family it carries a lot of weight with me-- but I think it carries a lot of weight with everyone-- cancer = bad, that's pretty clear.

Then I feel a little betrayed by my own body-- we're supposed to be on the same team-- seems you can't trust anyone, especially your own freaking body, how could she do this to me?

Then I realize that's not very productive and that I just need to process this a bit more and adjust. hmm... I'll be back a little later.

Back from the Hospital

So I just had a total thyroidectomy... and in case I didn't know what it was called before arriving at the hospital I would be sure to know after being there for ten minutes. It was like a quiz with every new person I encountered leading up to the procedure, that and my birthday and how to spell my last name.

I'm fine with them being thorough-- please please be thorough!

So I'm feeling alright. My throat is sore, it hurts to swallow, and the muscles in my neck are stiff. None of this is surprising.

It was scheduled as a outpatient procedure but I was held overnight for observation. I was glad for that little extra time to make sure things were fine before sending me home.

Dennis has been especially sweet. Before heading into the hospital he braided my hair-- into pigtails. I got a couple of blisters on my left hand the day before so did not have the dexterity to do it myself. The braided pigtails were a stroke of genius as they allowed me to be in bed for days without getting into a tangled mess-- so if you ever know anyone with long hair who will be in bed for several days, do them a favor and braid their hair into pigtails! It was nice to have something be comfortable.

We took some pictures before leaving the house, knowing I'd never be quite the same. Here is one of those pictures (the lack of glasses and the button-up shirt were part of planning ahead):



So naturally when you have a before picture you have to have an after picture. This one was taken this morning almost two days after surgery:



So yeah, no bandage-- I was surprised by that too. I'm stitched on the inside and glued shut. The surgical tape in the center is from when the doctor removed the drainage tube the next morning... but we don't have to talk about that. This is about as high as I can currently lift my head comfortably without feeling any pulling. If your gruesome sense of curiosity is not yet satisfied you may click on the above picture to see it larger.

So I'm off to take another nap but just wanted to let my three readers know that I'm doing fine and I really appreciate all the prayers and well wishes and good thoughts sent my way-- I feel it made a difference-- Thank you!

-- and the free slipper socks are totally worth it!

Last Day

I'm going in for surgery tomorrow... wish me luck!