RAI + Pregnancy = ?? (Part 2)

Part 1 and our disclaimer, found HERE.

So after my endocrinologist made me question if the baby was going to have three arms or something, he said he wanted to have the hospital do some calculations and give that information to my OB so someone a little more knowledgeable could figure out what the effects of the RAI would be on the baby.

And then I didn't hear from anyone for like a week.

Phil and I were pretty anxious at this point.  Phil put on his chemist/toxicologist hat and began doing some calculations.  He even found the same guidelines the doctors ended up using regarding risk exposure so fetuses.  Plus Phil called one of his good friends who also happens to be a nuclear pharmacist and asked him a few questions.  After we got done with our own research (which yielded very little on the internet), we felt A LOT better.  And a little mad at my doctor for implying I should consider an abortion.

We finally heard from my OB, who recommended we see a perinatologist, just to make sure everything would be alright.  Technically, I was a "high risk" pregnancy.

We met with the perinatologist who basically said we really didn't need to be too concerned about the radiation exposure to the baby.  WHEW!!  Huge confirmation of what we already suspected.

However, they recommended we have some extra ultrasounds done.  They wanted to make sure the baby didn't have a goiter (enlarged thyroid) forming and that the baby was growing at the proper rate (since radiation exposure can affect growth rates).

And that's where we are now.  These ultrasounds started with the 20 week anatomy scan and we'll continue to have ultrasounds every 4 weeks until Baby Janney makes his debut.  So far, Baby Janney is growing just as he should be, measuring exactly as he should.  He hasn't even been born and he's already being such a good little boy.  :)

I know there are some that believe ultrasounds can be harmful to the baby, but the perinatologist said that isn't true.  Plus I already exposed him to some radiation, so what's a little more, right?

So that's the skinny on that.  If you have any questions, feel free to ask them.  I just wanted to put all of the information about this pregnancy out there.  The complete back story.  It wasn't the ideal situation, but I also wouldn't change it at all.

RAI + Pregnancy = ?? (Part 1)

*This post is my opinion, based off the medical advice I was given as well as research/calculations Phil and I did.  I'm not a doctor and definitely think it is best to follow doctor's orders especially when it comes to cancer treatments and making babies.

When we first found out I had thyroid cancer, we had been trying to have a baby for about a year.  We were about to start working with a fertility clinic to figure out why were weren't able to get pregnant and move towards having a baby, but I felt like I really needed to get this pesky neck nodule thing all figured out first.  So for more than just the obvious reason of not wanting cancer, we were really hoping the nodules would come back as benign.

But they didn't.

So we started down the road towards cancer treatments and my doctor told me, clear as day, that there was no way I could get pregnant within a year of having radioactive iodine ablation done.  I'm pretty sure she even said, "I'm not kidding, Natalie.  If you get pregnant, you will have to have an abortion."  It wasn't what I wanted to hear, but I knew it was something I needed to do.

Feeling sad that it wouldn't be until 2014 that we had a baby, we went forward with the RAI but we were kind of curious as to why we had to wait so long to have a baby.  So we did what any normal couple would do and consulted the internet.

Site after site after site said you only needed to wait 6 months post RAI to get pregnant, and even then nobody really knew how radioactive iodine would affect a fetus.  All they knew was that if a fetus was exposed to radioactive iodine when the baby's thyroid was developing, obviously that would be bad.  But that was it.  Phil and I decided we would definitely wait the minimum 6 months, but we would discuss in October how we wanted to move forward.  We knew that the fertility clinic would not work with us until we had a letter from our doctor saying there was a green light for baby-makin'.

During this time, I switched doctors.  And my new endocrinologist echoed the research Phil and I had done saying we only needed to wait 6 months.  That was great news to Phil and I.  It was July when I made that switch and that was already 3 months into the 6 months. October would be here before we knew it!

But because I had no thyroid, my doctor had given me specific instructions that I needed to call him right away when I found out I was pregnant.  I would need to have my thyroid levels checked every 4 weeks for the duration of the pregnancy to make sure the baby and I were getting enough, since you tend to need more thyroid hormones when you are pregnant.  He sent us on our way with the reminder that we couldn't get pregnant until October.

2 months later at the beginning of September, I found out I was pregnant.

Oops.

I was SO EXCITED and terribly dreading having to call my endocrinologist.  I knew he would not be happy.

And he was not.

I had to leave him a message and he called me back, leaving me a voicemail to call his after hours number.  That's usually not a good sign.

I called him back.  He congratulated me and proceeded to tell me how I really wasn't supposed to get pregnant and he's not sure what exactly that means for the baby because he's never had someone get pregnant before the 6 months were past and then he asked me if I was planning to proceed with the pregnancy.

Of course I was.  But what were the possible side effects of the RAI on my baby?

He didn't know.  But his doubt about whether or not the baby would have any long lasting effects from the RAI freaked Phil and I out.

Reunited

Iodine and I have been reunited for about 5 days now and it is nothing like I thought it would be.  You read about my Food Lust last week and I seriously thought I was going to be so busy eating this weekend, I would have time for nothing else.

In a sick twist of irony, now that I can eat I really don't want to.

I'm not sure if it is the result of even higher TSH levels (I get to take my medicine again starting Thursday morning), the radioactive-iodine treatment, or my brain's own defense mechanism from being on the low-iodine diet.  Either way... it is lame.

My stomach growls and the thought of eating makes me want to vomit. 

Yesterday's lunch:

{I have LOVED Fruity Pebbles since I was really little. 

My Grandma always had them when I came to stay at her house.}

Another reason I might not have an appetite... I am a wee bit scared about my scan.

I know I shouldn't be.  Phil and Rikkie went over and over with me all the logical reasons that I shouldn't be worried:

1.  My endocrinologist and surgeon BOTH recommended I not have the second surgery and radioactive iodine.  My tumor was small, fully encapsulated, with clear margins, and minimally invasive.

2.  The Mayo Clinic guidelines for treating cancer with the size and type of tumor I had said I didn't need the second surgery and radioactive iodine.

3.  I am well under 45, but over 20 so the odds are in my favor that everything will be fine.  At worst, my cancer will be Stage 2 which still has an excellent survival rate.


Either way... I am freaked out about it.  And it kind of sounds like the endo's office has no plans to tell me the results of the scan until my next appointment... in a month.

Yeah that is SO not happening.  Especially since the imaging lab told me that my doctor should have my results by Friday.  Basically my doctor's office will be hearing from me at least once a day every day until I get those results.

You know what does sound good?  An ice cream sandwich.  I think I will have one of those a little later.

My Dexter Room

After I got all admitted to the hospital, we walked over to my cell hospital room.  On the way there, the nuclear med tech says, "Have you seen Dexter?"

I've seen a couple of the episodes, but couldn't actually watch it.  The premise totally freaked me out.

I replied, "Just a couple of episodes."

Tech, "Ok... the room you will be staying in looks like the room Dexter prepares for his victims."

O-kay...  Not sure how I feel about that.

I kind of get it.

Phil also said to me, "Do you feel like a dog?  You have to stay on the paper."  Very true.

I also kind of felt like a kid.  Every uncovered surface was like lava and I couldn't touch it.

Across the hall from me was a patient who had some kind of airborne illness that required the nurses to wear respirators into their room.  Phil was kind of curious what other kind of secluded patients they had on the floor with me.

In the Leper wing.

Our Infertility Story PART 2

(continued from PART 1...)

The next Thursday was my annual. It had been a year, so it was time to get it done. And I figured I would just get it out of the way. Afterall, the fertility clinic was going to insist I have a recent pap smear done and in their file.

I was so anxious for the appointment. At the time I had no idea why. Now I know it was a surge of thyroid hormones which had caused my extreme anxiety. I told the nurse doing my exam about our struggle to have a baby and our recent appointment with the fertility doctor. She decided that since I had been struggling to get pregnant, she was really going to do a thorough examination of my thyroid (which had been enlarged for at least 10 years).

That's when she found the nodule. Which turned out to be nodules. But I am pretty sure she found the cancerous one.

{Snoqualmie Falls, June 2011.  Our anniversary trip. 

A much needed break for us during the infertility stuff.}

I still remember the shot of anxiety that went through my body. Of course she reassured me that 95% of all nodules are benign, but I needed to get it checked out to be sure.  What followed were some blood tests, a neck ultrasound (can I just say waiting for a diagnostic ultrasound when you are infertile is like torture.  I saw AT LEAST 4 couples coming out with huge smiles on their faces and pictures of their developing fetus in their hands), and a referrel to an endocrinologist.

It took all my strength to not cry right there.  I was so afraid and at the time so SURE something was wrong.  It could have been intuition, but honestly I think I was driven by my anxiety and fear.  Some of the posts about my journey to the thyroid cancer diagnosis can be found HERE, HERE, HERE, and HERE.

I just can't believe how much has happened since last Easter. I had no idea what was ahead of me. I had no idea the pain and fear and craziness that was awaiting us.

I looked at Phil and said, "I am so glad it isn't this time last year." And then I thought about this next year. At the very least, we will have to wait this year next year to start fertility treatments. But I will take it. After everything that has happened this past year, I can take a year of waiting.

I pray and pray and pray that my scan comes back clear. Assuming everything comes back alright, Phil and I are starting to come up with quite a wonderful list of things to do in hopefully our last year without a baby (or pregnant if you will).

I am hopeful that, eventually, I will get pregnant and have my baby. And when I do, I will be able to look down at him/her and thank him/her for taking so long to get here. He/She may have saved my life in doing so.

So please, if you will, send some prayers my way. Prayers that the Radioactive Iodine treatment kills any and all remaining thyroid and thyroid cancer cells. And prayers that the scan comes back clear (that the cancer hadn't spread).  Prayers for peace and comfort during the next couple of weeks.

Phil and I are so appreciative of every kind word and prayer that is said for us.  Your support means a lot to me.  Thank you so much from the bottom of my radioactive heart.  :)

Our Infertility Story PART 1

I haven't talked much on here about our infertility story.  The "I" word has been dropped a few times and definitely alluded to, but the details haven't been shared.  For a while I think it was because Phil and I were a little ashamed.  After we got over that and realized the only reason infertile couples feel ashamed is because it isn't talked about enough, we branched out a little.

Since I am currently in one of the last steps of my thyroid cancer treatment (God willing), it seemed like a good time to discuss how I found out about the cancer.  And in our case, infertility helped in finding my cancer.  Not to be too dramatic, but infertility may have saved my life.

..................................................................................

Easter Sunday we went to church and then to my parents's house for dinner.  After dinner, we went to my dad's cousin's widow's house (did you follow that?) for an Easter egg hunt and dessert.  The drive to the Easter egg hunt was about an hour.  During the drive, Phil did his weekly phone call with his parents and drove (hands-free, don't worry) while I sat.

And it got me thinking...

I remember Easter last year.  We had just found out again that I wasn't pregnant and I had a feeling that things just weren't right.  Even though statistically it can take up to a year to get pregnant, for our age, it really shouldn't take longer than 6 months.  And we were past that.  We had decided we were going to explore some fertility tests to figure things out.

I remember thinking how sad I was that day.  Talking to my family was hard because I was just so upset that I wasn't pregnant.

Oh how little I knew at the time.

{The Columbia River Gorge, Oct. 2011.  I just think every post needs a picture.}

A couple of weeks after that, we got some of our fertility tests back.  Things weren't normal.  And nobody would really tell us what it meant.  We would need to see a reproductive endocrinologist for that.

For about a month and a half after that, we could hardly look at each other without bursting into tears.  There is something so fundamentally heartbreaking about having fertility issues.  I still can't figure out exactly why that is.  I think it could be because reproducing is such a basic human ability so many take for granted.  I mean, 16-years-olds can get pregnant in the back of cars.  Surely a responsible, financially stable, married couple should be able to have a baby.

When we had finally dealt with the news, we decided it was time to move forward and find a reproductive endocrinologist.  We are fortunate enough to live close to a couple of wonderful fertility clinics who offer several open houses and free seminars.  And since this is a HUGE decision to make (I think everyone is aware how expensive fertility treatments can be), we wanted to be completely informed when we picked a clinic and a doctor.

After 2 months of research, we had picked a clinic.  A couple of weeks after that, we had an appointment.  The appointment was excellent.  The nursing and administrative staff were so helpful.  The doctor walked us through every possible procedure.  And we left with the doctor saying, "We are going to get you pregnant by the end of the year."  We left feeling totally optimistic and with instructions to call on the first day of my next cycle.

That was a Thursday...

(It was a super long post, so I split it in 2.  Come back for PART 2 tomorrow...)

I've got a certain GLOW

{image from here}

I am headed to the hospital for what I am calling my "Thyroid Cancer Prison."  I will be in the hospital until my radioactivity levels drop to a level that is deemed safe for the public.  It can take between 18 hours and 3 days.

Everything I take with me into my "cell" has to stay there indefinitely.  They will hold everything I touch for 3 months and then dispose of it.  The room will have a TV and a phone.  No visitors.  And still on the low-iodine diet.  So here is what I am taking:

{Just some of the loot I am trekking to the hospital}

- My mom has been saving me magazines
- Sudoku book
- Crossword puzzle book
- Matched
- Two tennis balls (to play catch with myself)
- Fleece blanket (just a big piece of fabric I got for cheap)
- Socks (my feet get cold)
- Some low-iodine snacks
- A toothbrush (even though they are providing one, I wanted a good one)
- Soap (I won't be able to shower, but I can wash my face)
- Pens
- Phone numbers
- Lemon drops and Green Apple Jolly Ranchers (to help keep my salvatory glands working, a side effect of the RAI)

I had quite a bit of anxiety a couple of weeks ago about this part of the process.  Something about being kept in a hospital room and not being to leave, even if I wanted to.  I am guessing that is what jail feels like (without the yard time).  Or maybe what being committed feels like (without the fun crazies to talk to).

Phil will have my phone and is going to read me any of the comments you guys send me.  If you get a response, it is coming from me via my wonderful husband.  Not sure who is more looking forward to this process being over: me or him?

I've written some posts for the rest of the week, so I hope you will check back.

Another WILD Weekend

I got a call from the hospital Friday afternoon regarding my radioactive iodine treatment this next week.  They asked if I had any questions regarding my treatment.  I mentioned that I hadn't heard from my endo's office regarding my the results of my bloodwork.  He looked for me and told me my TSH (thyroid stimulating hormone) was above 50 (they stop measuring at 50) so I was good to go for tuesday.

Side note:  Normal TSH should be between 1.0 and 3.0.  For radioactive iodine, you have to go off your thyroid medicines to elevated your TSH above 30.  But it makes you feel like garbage.

My last weekend on the low-iodine diet was spending gearing up for my radioactive iodine treatment.  We ran errands Saturday morning which included a trip to Costco to get a book Tegan had recommended called Matched.  On our way to the book section, we found this:

Otherwise known as Phil's worst nightmare.  He is getting his PhD in Environmental and Molecular Toxicology and his dissertation research focuses on pesticides in watersheds.  He isn't anti-pesticide, but he is pro-educated pesticide management.  He has a problem with Round-Up because it is so readily available and people over apply it.  Even though it degrades relatively quickly in the environment, the constant use provides a steady concentration of Round-Up in most surface waters constantly.

We got the book, watched some more Big Love and then went to my brother and sister-in-law's house for Canasta, boys vs. girls.  We have gone 3 full rounds (5 hands in each round) and the boys are slightly ahead of the girls.  But we didn't lose any ground, so it was a success.

Sunday morning, we got up to head to church.  As I was getting ready, I made the unfortunate mistake of yawning.  My entire left side seized up, from my hip up through my shoulder and I was in so much pain.  I managed to yell for Phil who found me on the floor of the bedroom.  He gently rubbed my side, ribs and shoulder until the cramp went away and I was able to get back up.  But for the rest of the day, breathing was painful and I felt like the muscle cramp could come back at any minute.  Stupid high TSH!

I can imagine that is pretty close to what a heartache feels like.  Let me tell you... Not a fan.  I definitely don't want to be having one of THOSE any time soon.  Or ever.

After church and a few more errands, I worked.

Using leftover plywood from my DIY Chalkboard, I set up a little lap desk in my recliner.  With Harry Potter and the Half Blood Prince playing in the background, I spent over 4 hours designing some buildings.  Awesome.

I finished the bulk of the work I needed to do to be gone all this week (and probably most of next week).  I can't start taking my thyroid meds until the 26th, so I can't imagine working will be very easy, even after the diet is over.

And I fully intend to take the afternoon off today.  :)

That was a long post about nothing.  Thanks for hanging in there.

Phlebotomy Hell

To prepare for my Radioactive Iodine Treatment, I had to have some blood work done.  In case you were wondering, thyroid stuff means you have to get your blood taken A LOT.  Anyway... the blood tests included thyroid panel, thyroid cancer marker tests, CMP (whatever that is), and a blood pregnancy test (please...).

Now, I am not someone who is afraid of needles.  I'm not a huge fan of them, but getting my blood taken doesn't invoke a panic attack or make me want to vomit/pass out.  I think it is because whenever I had to have my blood taken when I was little, my mom bribed me with a Happy Meal if I was a brave girl.  Which I always was.  Loved me my McDonald's.

Usually, the tech that draws my blood does a wonderful job.  Can't even feel it.  No bruise.  She is wonderful.  So there really hasn't been any need to be anxious

But my last blood draw from the lab at the endo's office was SO PAINFUL.  I had a different tech and she was horrible.  It was one of those where they dig around and say, "Oops!  I went too far."  And thyroid tests take like 6 vials, so it isn't a short process.

So when I went in on Tuesday, I was really hoping for my previously wonderful phlebotomist.  I got a different lady.  My previous interactions with her haven't been that stellar.  This is mostly because she lacks any people skills.  And partially because she was wearing a Star Trek pin.

I sit down and she asks to see both arms which she then proceeds to grope, trying to find the right vein.  For those of you who don't know me, I am white.  Like super white.  Practically translucent.  I make vampires and albinos look they are from the Jersey Shore.  She finally finds a vein and it is a SUPER PAINFUL blood draw.

At this point, I was kicking myself for not requesting a different phlebotomist.

The one redeeming thing about this woman was when she said, "It must be scary to think about them cutting into your neck like that."  That is nice.  She then followed it up with, "Hopefully the doctor has a steady hand."  Yes.  That very sentence caused about a month of panic attacks before my first surgery.

My arm hurt for the rest of the day.  Literally 10 hours of arm pain.  And she left me with this:

{I told you I was white. You can see my veins in this picture.}

I love looking like an intravenous drug user.  Good times.

Lethargic and Random

My medically induced hypothyroidism is really starting to take the wind out of my sails.  I am really surprised at how I feel, actually.  I thought I would feel sick.  Kind of like I had the flu or something.  But it isn't really like that at all.

It is just this overwhelming lethargy (mixed with lots of other lovely symptoms).  Getting myself to do the smallest and most important things takes a HUGE pep talk from myself.  The day of the popcorn incident, it took my an hour to eat a banana.  And I was starving.  And then last night, I had to pee for like an hour and a half and just couldn't make myself get up and go.

It has to be getting on my husband's nerves.  Thankfully, I married up and he has been SO WONDERFUL with me this week.  Last night I was in bed and Phil was downstairs (I've been giving him some alone time to help him keep his sanity) and I started getting a headache.  There was no way I could get up and get my own Tylenol and I didn't have the energy to yell at him.  So I sent him a text message.

That's how we roll.

For those of you keeping track, I go in for my RAI treatment (or what I call "Thyroid Cancer Prison") next Tuesday.  I don't know how long I will be held hostage kept in the hospital.  It depends on how quickly the radiation levels drop.  Could be a day.  Could be 4 days.  We will see.  I started thinking that I should have been a little more proactive in planning my absence from the world, maybe arranged for some guest posts.  But I am pretty sure it is too late now.  Plus that would require energy to plan and organize it which I do not have.

I would have asked Grace from Camp Patton, since she has had Thyroid Cancer and been through all this jazz.  Although I don't think she whined about it, unlike me.

I would have had Tegan from EnLove with Life do a post since she and I are real life friends.

{Proof.  Tegan was in my bridal party.  And man... my friends are good lookin'}

I probably would have asked Jes from Two Smuppies.  We "met" through Tegan and I have determined that we are best friends, even if Jes doesn't agree (which she does).

But I didn't do any of that.  My bad.  You can always go read their blogs in my absence since they are all funny ladies.  However, it is my intention to plan ahead (a little) and post anyway.  I just won't be able to put the links one Facebook and Twitter.

This post had no purpose.  I'm honestly shocked I had the energy to write this much.  I should probably stop now.

A Sleepy Compromise

Saturday night, Phil and I made some Low-Iodine French bread and it ACTUALLY tastes like french bread!  Crazy.  Since I'm only allowed 4 servings of grains per day, I used 3 of them yesterday to have french bread and dip it in balsamic vinegar and olive oil.

It was crazy good.  Almost made me want to cry.

Until it made me want to vomit.

About 10:30 Sunday night, acid reflux was raging war.  I am pretty sure it was the olive oil and whiskey.  Not the best combination.  I didn't go to sleep until after midnight and then woke up every single hour until 6 in the morning, when Phil had the alarm clock going off every 15 minutes until about 7:30.  THEN Phil was downstair wrestling in the kitchen or something.  I don't know but it was loud.  And after his shower, he proceeded to bump into the bed every 2 seconds.

After Phil left, I COULD.NOT.GO.BACK.TO.SLEEP.

{image found HERE}

I am tired.  And I decided to use my excellent mood this morning to call the hospital I had my surgery at to discuss the bill and then the hospital I will have my RAI to ask some gentle questions.

It was a resounding success.  Not really.

I confirmed that next week I WILL be headed to "Thyroid Cancer Prison" as I like to call it.  But I also found out that my LID diet can stop about 5 days sooner.  A little give and take.

The idea that I only have 10 days left on this diet makes me want to run through the streets rejoicing.  I probably won't be running though.  I'm too tired.

Radioactive Iodine and Low-Iodine Diet

A part of my thyroid cancer treatment involves a dose of Radioactive Iodine (RAI), which is oral chemotherapy.  To prepare for this, I will have to stop taking my thyroid medicine and go on a low-iodine diet for about 5 weeks (4 weeks before, 1 week after).

Educational moment:  Thyroid tissue is the only tissue in the body that takes up iodine and iodine is actually really important for normal thyroids.  Lack of iodine in the diet is associated with goitars and other thyroid malfunctions.  For this reason, developed countries have added iodine to pretty much everything to make sure that people get enough.

The type of cancer I have likes to spread via the bloodstream to your lungs and bones, but really it can pop up anywhere in the body.  And even after a thyroidectomy, there is still some remnant thyroid tissue left in the body (around the parathyroid glands).

Since iodine is only taken up by thyroid tissue, it is the perfect mechanism for killing leftover thyroid tissue and killing any thyroid cancer cells that may be in other locations of the body.  RAI will help get rid of any cancer cells which may have spread (which hopefully none did) and help keep the cancer from coming back.

A nuclear pharmacist (like our friend, Reid) will prepare a radioactive form of the iodine (I-131).  In terms of side effects, it doesn't have many.  It is a MUCH better alternative to systemic chemotherapy.

The Low-Iodine diet will basically starve my body of Iodine so that when I get the I-131, the thyroid tissue will soak it all up.

There are quite a few restrictions on this diet.  They differ a little depending on who you talk to, but here's the jist:

-  No dairy (that includes cheese, milk, ice cream, butter, yogurt, and chocolate)
-  No egg yolks
-  No soy products
-  Basically nothing processed
-  No iodinized salt
-  Nothing from the ocean.  No fish, shellfish, sea salt, seaweed, etc.
-  No chicken plumped with brine.
-  Only 6 oz. of meat a day
-  Only 4 servings of grains a day
-  No Red #3
-  Distilled Water
-  Certain types of beans are off limits
-  Not too much spinach and broccoli
-  No canned anything (except peaches, pineapple, and one other thing I can't remember)

There's still plenty to eat, but it requires a little more planning than usual since almost EVERYTHING has to be made from scratch.  And it will be a lot of fruits and vegetables.  I am secretly hoping I will lose weight while doing this, but that isn't likely.  In addition to the restricted diet, I have to stop taking my thyroid medicine so my metabolism will be virtually non-existant.  And I'll probably feel like crap. 

But it must be done!  I can do it.  Hopefully this will be one of the last steps in this process.