14. No One Likes to Diet

“How are you feeling?”

Over the last two weeks I’ve been off of my T4 but still taking T3 (the medicine that works in short bursts of 5 to 6 hours). I have felt… absolutely fine. The T3 does it’s job until it doesn’t- all of a sudden I’ll feel like I got hit by a ton of bricks, but then I take my second dose of the day and I’m off to the races again! Tomorrow, however, my beloved speed pills will be pried from my tired fingers. It marks the 16 day countdown until Glow Time and also the start of the LID (Low-Iodine Diet).

Dieting = Starvation (duh!)

Thyroid hormones rely on iodine to work properly (to put it simply). So, by going on a LID prior to RAI (Radioactive Iodine), I will be “starving” the thyroid hormones that are helping my body function. The “hungrier” they are for iodine, the better they’ll take up the RAI. With me so far? Starve the workers, then feed them poison.

I wanted to give my PCOS and insulin resistance a break, in addition to getting my cells into fighting shape, so this past January we adopted a mostly Paleo lifestyle. We started with the Whole 30 (30 days of torture where you only eat meat, produce, and some nuts while thinking you’re going to die for the first 14 days) but we felt SO GOOD after we decided not to add many foods back in. Now, we occasionally eat whole grain oatmeal for breakfast, some cheese, or throw some beans in with our tacos, but that’s about as non-Paleo as we get. Oh, and some rice when we eat out. We loooooove sushi! Don’t me wrong- we aren’t super strict about it, especially with the kids, and I WILL devour a slice of cake at your party (that was me audibly drooling in the corner before you lit the candles). I’ll pay for it later, though, and it will be weeks before I try sugar again. While eating Paleo is crucial for my health, none of us have an allergy or an intolerance (that we know of) and I consider us extremely fortunate to have the luxury of being flexible with our food choices.

What to Expect When You’re Dieting

When Dr. Gru told me about the diet I think I literally waved my hand at him and said “Psh, I’m not worried about that.” He looked pretty surprised, and when his minions came in later he quietly mentioned “She said she’s not worried about the LID…” All three of their heads turned simultaneously to study the strange creature who “isn’t worried” about giving up pre-packaged food. Thinking it wouldn’t be that different from the Whole30, I procrastinated on preparing myself.

You guys, I was wrong.

While it might not be as difficult for a Paleo person to adapt to the LID, it still sucks. Here are my thoughts while I read through the LID rules (or as I like to call it, the “Cook a lot of stuff when you feel the worst” Diet).

-No seafood
(Bummer, no sushi. I guess I know what my first meal after RAI will be!)
-No Soy or soy products
(Whew, I already gave that up. Too much soy is bad for you anyway. )
-No iodized salt 
(Not so bad, just get the other kind of salt, right?)
-No dairy
(I don’t really have a lot of dairy anyway, but I’ll miss butter.)
-No egg yolks
(Shit, wait a second, I eat a LOT of eggs and the yolk is the yummy part…)
-Nothing pre-packaged, including breads (anything containing salt is not safe, so… everything).
(It’s cool, I don’t eat bread anyway! Hold up, my mayo has salt in it? NO! I hate making my own! My hummus, my guacamole, my plantain chips, my GF crackers… omg what am I going to EAT?! I guess just a lot of chicken.)
Limit meats to 6 ounces per day
(Shit.)
-NO CHOCOLATE
*sobs quietly, rocking while clutching dark chocolate

Since eating Paleo already limits my food choices, taking away the few things I know I can eat feels extra mean. Here’s the worst part: my birthday is next week, and so is Easter. Bummer. I’ve moved into acceptance though. We have a giant LID cookbook (thanks ThyCa.org!) to work with and a husband who loves to cook dinner (I know, I’m the luckiest!), so I’ll be fine! I’m also going to be a little more flexible with the whole Paleo thing which will help a lot. You better believe I’m going to have some kick-ass meals when this is over though- it will be like a whole week of birthdays!

Nothing.

I might tease about the LID and how “horrible” it is, but it is NOTHING. It’s nothing, not even a blip, on my radar of life. Three weeks? I can eat some bland food for three weeks. I can feel yucky for three weeks. I can be alone for a whole week (what mother doesn’t wish for that sometimes?). All of this pales in comparison to what other cancer fighters go through. Years of surgery, chemo, radiation… I cannot fathom going through all of that day after day for months and years, tearing your body apart, especially if you have other people relying on you. I am in awe of all of those amazing, brave, and truly incredible people.

Last week I took the kids to a museum and as we were leaving I saw a mother walk in pushing a double stroller. She had a two small children, a protruding round pregnant belly, and a scarf on her bald head. While many things can cause missing hair and eyebrows, my heart obviously went to Cancer. The immense flood of emotions I felt almost brought me to my knees. I wanted to go over and talk to her, maybe offer her help. I wanted to tell her that she’s amazing, and brave, and I am in awe of her (and others like her). Mostly I just wanted to quietly hug her for a long time.That would cross even my line of weirdness though, so we left. This is not the first time I have been truly humbled by someone else’s cancer journey- it’s not even the most recent time. In fact, I am touched quite a bit deeper by the word “Cancer” than I ever was before my own journey started.

I have said many times that Thyroid Cancer is just my “thing.” Everyone has one, and this is mine. Every single day I count my blessings and thank higher powers that my “thing” is very treatable and that we have so much help and people who love us. My treatment window is a few short weeks, and I will occasionally have to battle thyroid issues throughout my life but it’s nothing I can’t handle. I am continually inspired by the bravery and courage of the others who have gone before me and those who are fighting now. And, as always, life keeps moving forward.

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13. Despicable RAI

Two weeks ago I met with Dr. T at the Nuclear Medicine department. He looks and sounds JUST LIKE Gru from Despicable Me. I’m serious, it’s crazy.

Gru

Dr. Gru and I spoke for over 90 minutes about my RAI treatment (while I tried not to giggle at the cartoonish resemblance). Even though it’s no longer the go-to treatment for thyroid cancer patients, they are recommending it in my case because my thyroglobulin levels have been fluctuating since surgery. My big concern is that I still have a tiny bit of milk. Since RAI concentrates itself in bodily fluids, my milk ducts would essentially be sitting filled with radioactive material (which puts me at risk for breast cancer). Thyroid cancer patients are already 30% more likely to develop another cancer later in life (usually breast cancer because of the out-of-whack hormones) and I have a family history of breast cancer on both sides so I am understandably worried about increasing my risk even further. Dr. Gru conferenced in a medical physicist who was VERY knowledgable and told us which precautions to take to minimize risk. We are also really hoping I’ll dry up completely in the next 5 weeks (since it has already been 5 freaking months!).

Here is the schedule for March and April: 

March 1st: Stop T4 medication, get blood drawn. We need to deprive my body of thyroid hormone for as long as it’s safe (about 5 weeks) so that the cells will be “hungry” for the RAI. My body will slowly start to shut down, but I can continue taking my T3 medication for a little while so hopefully it won’t be too bad.

March 22nd: Stop T3 medication and start the Low Iodine Diet for two weeks.

*During this time I will feel awful. To quote Dr. Gru and his nurses (minions?): “Tired, muscle pain and  weakness, swollen, weight gain, hair loss, angry, depressed, emotional, and brain fog.” They even advised against driving because my brain function will be so impaired. My favorite part was when the nurse mentioned “and you’ll get bags under your eyes.” I just laughed and said “Well that’s one thing that won’t be any different than usual!”

April 4: Get my blood drawn.

April 5: Tracer (very small) dose of RAI.

April 6: RAI uptake scan.

April 7: RAI TREATMENT DOSE. I’ll be very radioactive at this point and I’ll be in complete isolation for at least 3 days. I can start being around adults at arm’s length for short periods of time after that. I’ll have to be away from the kids for at least 8 days and sleep away from them for longer.

April 14: Whole Body Scan

 

Starting Off Right

Today is March 1st, so off I went to get my blood drawn (and I stopped my T4). Dr. AOK wants to get a baseline on a veritable alphabet of hormones (other than thyroid) so they needed to take 5 tubes. Henry was at preschool and I thought I was being SO clever by wearing Eleanor so I wouldn’t have to push the stroller through a crowded lab.

Photo Mar 01, 9 03 03 AM

It was very clever… until I passed out. I should add here that, although I believe needles to be torture devices, I get my blood drawn regularly and I power through. This was a fasting test though, and did I mention they needed 5 tubes? When the nurse started saying things like “Your blood is just not flowing well today. I don’t know why it’s not coming out…” I started to fade. I mentioned I was going to pass out, she looked at my face, and all hell broke loose (my mother has always said that my freckles pop out when all the blood drains away). The nurse yelled for help and 4 people rushed in. I had to walk them through getting Eleanor out of the carrier while I tried not to throw up. They brought ice and juice and put me on a table. They were so wonderful- they gave Eleanor a brand new toy and we each got a lollipop (it was her first one and the glee on her face was contagious). Within 15 minutes I was feeling much better and pretty embarrassed. Why am I telling you all of this? Because it’s hilarious (after the fact). At home I couldn’t help but chuckle to myself as I wiped the decimated grape lollipop off of Eleanor’s happy face.

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Notice my death-like parlor here.

So, the first day of the second part of this Thyroid Cancer journey has started out with a bang. Good thing I’m always up for an adventure!

12. Catching Up

Well Hello there!

To say I haven’t written in awhile is a massive understatement. It has been approximately 18 months since I spent an hour writing a blog post. For those more mathematically inclined that’s roughly 546 days or 13,104 hours. Something like 4,368 of those hours are attempted sleep (pause for laughter) which leaves 8,736 hours that I have been wiping, snuggling, reading, driving, feeding, eating, cleaning, rocking, mending, washing, folding, separating, consoling, exploring, building, bathing, dressing, hugging, kissing, loving, and everything else on repeat. For a short time I pretended to have time to sew, but in reality that was just subtracted from my allotted sleeping hours.

Could I have written during the handful of times both children napped at the same time or were in bed early? Probably, but I would have had to sacrifice eating while sitting down or reading a trashy historical romance novel. Also (and I think this is the major point here): no one wants to read about the stuff I have been doing. It’s delightful for me and I try to document these moments with as many photos as my phone will hold in one day (because I forget them so easily) but in reality everyone else is busy having their own moments. Some of mine are worth sharing, but the blog-worthy moments over the last 18 months have been few and far between, especially those medically related. Things are starting to pick up again, however, and I find myself in the position of needing to spread information without repeatedly answering the same questions. So here I am!

Let’s play catch up

My last blog post was a week after my surgery. Here is a very sped-up version of events since then:

August-December 2014: It took a couple of months to fully recover from my surgery and its side-effects. My belly grew more grotesquely massive every day as I waddled around preparing for the impending events (let’s just say that Santa definitely over-did Christmas that year).

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December 22, 2014: Miss Eleanor Rosina made her long-awaited debut at a whopping 9lbs, 9 oz, 21 inches long with a 15 inch head. True to form, she danced out when she decided the moment was right (40 hours of back labor later). Since she was a successful VBAC (vaginal birth after a caesarean) I’ll try to not to guilt trip her quite as often in her teenage years (kidding…sort of).

Photo Mar 01, 8 02 47 PM

December-October 2015: Eleanor had colic until about 6 months old, and refused to eat for several months. At one point she was even diagnosed as Failure to Thrive (which is laughable to anyone who knows her as the hollow-legged creature she is now). During all of that our breastfeeding relationship was crucial for her nutrition. I saw my Endocrine Oncologist every 6-8 weeks for blood and ultrasound checks, begging each time to just breastfeed a little longer. Finally, when Eleanor was about 9 months old, he saw what he is “sure is scar tissue” on an ultrasound, but combined with a very slightly increased thyroglobulin* level we decided that it was time to start the weaning process and prepare for Radioactive Iodine Therapy (RAI).

*Thyroglobulin is the number they use to determine if there are any thyroid cells in your body. For a thyroid cancer patient the ideal number is Zero since there is no way to distinguish healthy thyroid cells from cancerous ones. It’s impossible to get every cell with surgery, however, which is why RAI is performed.

November-January 2016: Eleanor put up quite the fight but eventually we stopped nursing completely. Since I went straight from breastfeeding Henry to pregnant with Eleanor, my body has spent the majority of the last five years dealing with crazy hormones. Around Eleanor’s first birthday, it was as if my body suddenly woke up and realized (for the first time) that my thyroid is truly gone.

Photo Mar 01, 8 03 27 PM

Time to back up for a minute.

Up until this point I never really felt like the “typical thyroid patient.” When I was first diagnosed, I did what I always do- I researched. I read as much as I could, including many personal accounts from blogs and chat groups. I read countless stories and memes referencing the “typical thyroid patient” as being overweight, fatigued, and weak with thinning hair, dry skin, and severe mood swings (among many other things). So when someone would ask how I felt I would, in all honesty, tell them I felt fine. I thought I must be one of the lucky people who can just take Synthroid and live a normal life (even though my body is missing a major organ). In fact, that’s exactly what doctors tell you when you’re diagnosed:

The typical “Thyroid Cancer Speech” 

Doctor: “Hey, you have Thyroid Cancer. Listen though, it’s really no big deal. You’ll have surgery, you’ll drink a radioactive drink, and you’ll take a pill every day. Other than that, you’ll live a totally normal life. If you’re going to get cancer, this is the cancer you want to have.”

I’m going to pause here while everyone rolls their eyes. Why? Because we all know better. Your body can function without a thyroid, but it’s not supposed to. Here is an important thing for everyone to remember:

Everything in the body is connected. EVERYTHING.

Simplified summary: when you mess with the thyroid (which is a hormone), your other hormones usually go out of whack. When your hormones go crazy, usually your insulin is affected. Your insulin levels tie into your kidneys and gut health and fat storage… you get the idea.

Breastfeeding kept my other hormones relatively stable, which is why it took weaning for my endocrine system to remember that, prior to children, I had PCOS* and Insulin Resistance* and now I have them without a thyroid. All of a sudden I felt like I lost control of my body.

*PCOS: Polycystic ovary syndrome, or “Psychotic hormone imbalance syndrome.”

*Insulin Resistance: where your body doesn’t absorb insulin properly, so it’s fooled into thinking you don’t have enough and continues to make more. It stores the extra insulin with your fat, usually in your midsection.

The good news is that I found a new Endocrinologist (had to stop treatment for awhile because we switched insurance. Don’t even get me STARTED on the mess that is private insurance). His hyphenated last name has the initials A-K so I like to call him Dr. AOK (that’s totally his personality too- everything is A-okay!). He started me on metformin to help my insulin levels (at least while we treat the cancer), he added in a T3 medication*, and he set me up with the Nuclear Medicine department to get the RAI ball rolling. Dr. AOK is an older arab gentleman who sat next to me and promised he would treat me “just like his own daughter.”

*T3 is the thyroid hormone (there are actually 5 of them) that every single cell in the body uses. Synthroid, and other thyroid medications, are T4 which the body is supposed to convert to T3 for use. Well, without a thyroid, sometimes the body can’t keep up with the conversion and that’s when the symptoms start to kick in. Giving patients T3 twice per day (a short-lived medication that is almost like a burst of energy) is controversial among Endocrinologists but I’m glad I found one willing to try it. I do notice a difference when I’m taking it. 

I’ll continue with the treatment plan in a separate post here.

11. On the Other Side

Well, yesterday marked one week after the surgery and it has not been an easy one. All the Doctors (and most of the people who have been through this before) made it seem like it would be no big deal, in and out of the hospital in less than 24 hrs, a couple of days of pain meds: easy peesy! Maybe a few extra days of being tired because of pregnancy, but that’s it. Well, apparently we all grossly underestimated the roll Super Baby would play.

Here I am before going in:

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Let’s go over some of the more technical aspects of the surgery. Here is the good news: it went really well! The Doctors said that the tumor was much larger than they expected The thyroid + 5 cm tumor= about half of a grilled cheese sandwich (why they chose this as a metaphor is beyond me- I personally find that gross). The surrounding lymph nodes are unaffected though so Yay!

Also, a quick shout out to my husband to thoroughly enjoyed using UofM’s technology to update everyone during every step of the surgery:

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It made me nervous that they only check SB’s heartbeat right before and right after the surgery, but I could feel her kicking away so I knew she was fine.

Recovery in The Hospital: Not Fun Stuff (feel free to skip ahead).

They had to dig some tumor out from under my sternum, and they used a special (larger) intubation tube that measured my vocal nerves. For those reasons I woke up with major chest and throat pain. It was difficult to swallow or talk, but thankfully that only lasted a couple of days.

The major problem: I couldn’t keep anything down for almost 3 days. By Tuesday night I hadn’t kept down any food OR meds and I was almost in tears (throwing up after neck surgery is not fun). That’s right- no pain management AT ALL after surgery. Eventually they had to give me morphine through my IV, but each dose only lasted about 2-3 hours so there was very little sleep for me. After the first night they wanted me to be on pills only on the off-chance we would find something I could go home on. The choices were very limited because of pregnancy. *A quick appreciation and Thank You to my nurses, especially my night nurses. Kristen and Liz really fought to help me manage my pain and were on top of my every need. Truly amazing people.

I ended up staying until Thursday afternoon (2 days longer than expected) until I could keep applesauce down and some calcium pills at least (your parathyroid, which manages calcium levels, gets stressed during surgery).

Let me just take a minute to thank my great hospital visitors and well-wishers. You all truly kept me going! My Mom brought beautiful pink hydrangeas and my sister found the PERFECT accessory set for Super Baby, and even Noodle came to visit and say hello to Super Baby:

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Our Amazing Support Team

C desperately wanted to be with me in the hospital, but we wanted Noodle’s schedule to be as normal as possible. Thank god for our amazing family! My Dad watched Noodle ALL DAY on Tuesday, and my sister and brother-in-law watched Noodle on Wednesday (he had the absolute time of his life with them!). By Thursday, though, C was running himself ragged with juggling everything and trying to be at the hospital an hour away, so his incredible Mama flew in last-minute for support. She stayed until Monday and we would NOT have made it without her. I cannot express how great it was having her helping hands with the house, with Noodle, but mostly with the two of us. A very big and sincere THANK YOU to everyone!!! Our hearts are so filled with gratitude and love for all of you.

At Home

Coming home has been harder than I thought. I am supposed to be getting better every day, but that is not the case. The first day or two I felt great! Well, I felt great after C spent 2 hours going to 6 pharmacies trying to get my pain meds filled. Apparently no one carries that hard stuff anymore. My MIL told him to just head on down to 8 mile (we live at 9 mile) and get some- certainly not covered by insurance but way easier to get! If we have a sudden influx of cash you’ll know where we sold the rest of my meds 😉

Friday night we went for a walk to get ice cream, and Saturday morning we went out to breakfast. Apparently though, that was too much. I crashed HARD. I stopped keeping things down anymore and the pain meds weren’t working. It’s Wednesday now and I’m keeping most food down, but I’m still struggling with finding a working combination to treat the pain. I had to stop taking the heavy stuff (it made me dizzy and sick) so I am relying on just 1 Tylenol every 4 hours (read: pretty much nothing).

It’s not even the surgery site that hurts. My incision looks great! I’m so grateful to have such a talented surgeon! Here are some photos from our vacation one week before the surgery showing the major lump in my neck:

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and a photo from my first day home (Thursday) compared 2 photos from today:

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The problem lies with the horrible headache/migraine I’ve had 24/7 since the surgery. It could be from the surgery positioning, it could be from my other neck muscles compensating for the weakness in the front muscles, it could be hormones: or everything combined. The only other problem I have is the extreme fatigue! It feels like someone attached weights to my bones (like Wolverine!) and then put me in Jello. It could be my body healing, or it could be adjusting to synthetic Thyroid hormone.

You know what though? If headache and fatigue are my two biggest problems I’m doing pretty great! I feel SO LUCKY and extraordinarily grateful for my medical team, my family, my friends, and my life. This is especially true in light of the recent flooding. So many of our friends and neighbors lost so much, and even though poor C has been cleaning sewage out of our basement for 2 days we are still the lucky ones (we lost very little).

I am alive, and I am surrounded by love 🙂 That, combined with the kicks and nudges of the life growing inside me, make me feel over the moon. Continue reading

Surgery Day!

Today is surgery day! Let’s run over what I’ve learned about the surgery since my last post:

The Big Ultrasound

On Thursday July 31 we went to UofM for two things: the anatomy scan, and the meeting with the High Risk Obs to discuss the surgery.

I was so incredibly nervous about the ultrasound. All I have wanted to know the whole pregnancy is that everything is developing normally, especially after being exposed to radiation so early on. I didn’t sleep the night before (I scared the crap out of C when he came downstairs at 4am and I was scarfing down graham crackers in the dark).

They checked EVERYTHING on this ultrasound- we’re talking brain, heart, kidneys, bladder, diaphragm, mouth, stomach, spinal cord, bones: the works! I don’t remember all of that with Noodle but as the tech walked us through it all she said “Everything looks perfect! I wish all of my babies were this photogenic!”
Plus, we found out that Noodle correctly predicted that Super Baby is a GIRL (he never wavered in his declaration)! We are thrilled, and I feel a huge sense of relief that she is so healthy.

Super Baby Takes On Surgery

Apparently, baby is too small to keep on a monitor the whole surgery so they will check on her just before and just after. Plus, if something happens, there is little they can do because it’s still early. While I don’t love this answer I certainly understand it. There are a few other precautions they’ll be taking because of the pregnancy (putting a towel under one side of my back to make sure I’m not lying flat the whole time), but for the most part the surgery is routine. General anesthesia will put both of us to sleep and relax the uterine muscles so preterm labor is not really a concern. The Ob I spoke with said in his whole career he has yet to see someone lose a late 2nd tri baby because of surgery, which is reassuring!

Prepping

In the last several days I’ve done my best to Type-A everything currently within my control. Cooking, cleaning, planning, you name it. Unfortunately, the high level of nerves also meant several sleepless nights leading to the inevitable Knock-You-Down-Migraine and accompanying sickness on the day before surgery. I had to let go of a lot of my to-do list, but let’s be honest: none of it really mattered anyway. The house is (relatively) picked up, our freezer has enough food for a month, and we can handle anything that comes our way.

All of that aside, I’m extraordinarily nervous. I told C (and anyone who asked if I’m ok) that there is nothing in this world that will make me feel ok with having major surgery while pregnant. When it was just me I was a little nervous, but not really. Now, however, there is another life involved. I am putting her through this. Here’s the thing: I know she’s a tough cookie, I have total faith in our (large) team of amazing doctors, and I know things will be ok. It doesn’t stop me from being scared. Last night, scrubbing down with antibacterial soap at 11:30pm, my biggest concern was if they’ll give my socks to hide my mulberry stained feet. It was all I could focus on without losing it.

I scarfed down some food right before midnight and tossed and turned until the alarm went off. I’m currently writing from my pre-op hospital bed and we are rating our best to crack jokes about my hospital gown and “flying Scottish” and how much Noodle would love the Lightning McQueen stickers.

The love and support we have received in the form of visits, messages, and even a special pillow has been overwhelming. We are so grateful and it really helps- keep the positive thoughts coming!

We love you all!

9. Life Finds A Way

I’m back! You thought I was gone, didn’t you? You thought I just gave up, forgot about the blog, and abandoned all of you that have questions. How could I do that to you? After a cliff-hanger no less?

Ok, listen, before you bring out the pitchforks let me just tell you I’m sorry. I mean truly, awfully sorry. I promise to be better in the future! Now, let me see if I can explain a little bit.

For those of you who don’t know, the “surprise that needs investigating” found in my pre-surgical testing is… a baby!

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Yes, a week before I was due to have my thyroid removed, we found out that I’m pregnant. My intention was to wait until we were out of the first trimester (and felt like things were continuing normally) to update the blog. Let’s be honest though: that was a month ago, and the weeks since we passed that crucial point have been a little nuts. Noodle was sick, I was sick, we started potty training (a weeks-long process requiring constant watching of the sneaky toddler), and a whole bunch of other stuff. I’ll stop making excuses because the point is: I’m here now.

I am going to try and break this down into logical sections: How We Found Out, What Happened Next, The Plan, The Schedule, and Reflections. Feel free to skip any sections you don’t really care about! I thought about stretching these into separate blog posts, but I think it’s best to just get it all out now. Please bare with me!

 

HOW WE FOUND OUT

It was a Friday afternoon when I had my second CT-Scan done. Right before the test was performed, the nurse asked me the basic question: “When was your last period?” I told her, and she stopped and said “Um, you’re a day late. Are you pregnant?”

I scoffed at her in my head. I have PCOS with insulin resistance, I had just stopped breastfeeding Noodle, and the timing didn’t line up for me to be pregnant. I mean, Noodle only happened after 4 months of blood sugar medication and extensive lifestyle/dietary changes and even that totally baffled my Doctors! He was considered a miracle. One day “late” was not something to even blink at for me: I haven’t been “regular” in my entire life. Plus, we had been pretty conscience to try and ‘avoid’ this situation (stop laughing!).

So I laughed a little and said “If I’m pregnant it would be a miracle.”

Nurse: “Ok, but this is RADIATION. It’s serious. You don’t want to mess with that. Are you really sure? Do you want to reschedule?”

Reschedule?!?! ARE YOU KIDDING ME? That will be WEEKS!

Horrified at the thought, I said “I’m not pregnant, I’ll sign the form. It’s more important to keep ME healthy.”

The thing is though, her insistence nagged at me. Waiting in line to pick up our sushi dinner on the way home, I made the decision to pop into the Dollar store across the street and buy a cheap test. As I stood in line, clutching my $1.06 and my Pregnancy test among the people who were buying groceries for the week, I felt silly. I almost left several times.

At home, as C got dinner situated, I took the test. When I saw the second pink line appear I whispered “No no no no no this is not real!” and my heart stopped. “Dinner’s ready honey, come on!” C called. I put the test in the closet, took a couple of deep breaths, and ate sushi with my family. I was in shock, but I was still conscience to only eat the cooked fish, just in case.

After Noodle was asleep that night, Clint and I were in bed and I turned to face him. “Honey, I have to tell you something.”

As soon as I finished the story, I burst into tears.

I sobbed for hours and hours and hours, harder than I ever have. With the exposure to radiation so early, and the risk that pregnancy would make the cancer grow faster, I was devastated. We wanted to have another baby (before we found out about the cancer) but not like this! I didn’t know what any of it meant. I was terrified and wracked with guilt. All of this, of course, happened on a Friday so we had to wait until Monday morning before we could do anything. It was the longest weekend I have ever had- knowing I was pregnant and unsure if it might end or harm me in the process. Talk about a rock and a hard place!

 

WHAT HAPPENED NEXT

Weeks of doctor’s appointments. The midwives/Obs I used with Noodle sent me directly to a Maternal Fetal Medicine Doctor. My surgeon Dr. T wanted to see me, my endocrinologist Dr. K wanted to see me- I was a hot commodity! Dr. T was extraordinarily reassuring and said that an extra 9 months would make little to no difference in the size the of cancer. The MFM Doctor was useless- he talked to me like a child and told me that everything depended on what my endocrinologist said. When I asked him about the baby (the whole reason we were seeing him) he said “Well, this is a Catholic hospital, so I’ll just see you when you’re farther along and we’ll talk about possible problems.” The only helpful information he had was that the CT exposure was not a problem, especially since it was of my neck.

Seeking second opinions, we called University of Michigan. What it had taken our other team of Doctors weeks to schedule, they did in one day. The Obs had phone consultations with me right away, and said “I’m so sorry you have to go through this.” It was the first time a medical professional recognized me as a person, not to mention acknowledged the turmoil I was in.

The Obs assured me, again, that the exposure to radiation posed almost NO risk to the baby and they were happy to walk me through this pregnancy. I met with a new Endocrinologist (Dr. K), who happens to be the HEAD of the Endocrine Oncology department at UofM. He is a leading tenured professor, an expert at treating Thyroid disorders in pregnancy, and treated me like a human. He introduced me to the amazing surgeons he works with, and we were off to the races.

Everyone agreed: there is no reason I can’t go on to have a totally normal pregnancy.

WHOA. I’m having a baby for Christmas. WHAT?!

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THE PLAN

Dr. K put me on thyroid medicine right away. He said that keeping me in a hyperthyroid state will (besides keep me awake at night) suppress the growth of the cancer, and make the transition easier when I have my thyroid removed.

Yes, the surgery is still on! Apparently, Dr. K found lumps and bumps ALL over my thyroid. He proclaimed it “Huge!” six times (C counted). The good news: he said it looks like the cancer has not spread to my lymph nodes which is a great sign! It’s very likely that the cancer is only in one or two “lumps” and the rest is benign. We won’t know more until the actual surgery though. The radioactive iodine will, of course, wait until after the baby is born.

He has me check my thyroid levels once per month, when I’m at UofM to see the Ob. After he gets the results, we communicate via email (YES, my Doctors email me. It’s GREAT!). Another wonderful perk to the UofM system: it’s SO easy for the Doctors to communicate with each other. My whole team knows everything that’s going on with me and I don’t have to repeat myself all the time. It’s an hour-long drive for every appointment, but SO worth it!

So far, the pregnancy has been progressing very well! I can’t believe it! I was pretty sick (and still am some days) and exhausted. The first trimester was pretty rough, but now I am growing rapidly at 18 weeks pregnant and baby is moving all the time!

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My sister started calling the baby Super Baby, because he/she HAD to come RIGHT NOW in spite of a thousand odds stacked against him/her. It’s fitting 🙂

 

THE SCHEDULE

Friday July 18: Meet with the surgeon (Dr. H), and have my pre-surgical screening done.

Thursday July 31: See the Ob to discuss the surgery, and have an ultrasound to (hopefully) find out the sex of Super Baby!

Tuesday August 5: SURGERY. The big day! 

 

REFLECTIONS

The last few months have, quite possibly, been the craziest I have ever had. If you’ll recall, in one of my very first blog posts I compared finding out I have cancer to finding out I’m pregnant, with my sub-conscience chanting “I have cancer, there is death inside of me, I have cancer.” How prophetic of me. Now it’s both, and it’s mind-blowing.

The night I found out about Super Baby, I sobbed to C “How did this happen?! I didn’t think it could and we were careful just in case!”

My amazing husband held my hands, looked me in the eye, and said calmly:

“Em. Life finds a way.”

He’s right. I repeat it to myself when I start to panic: Life finds a way of going on, and it happens One Day At a Time.

I feel nothing but gratitude for this miraculous opportunity to be a parent again (the greatest gift I have EVER been given) and for the fact that my health concerns are relatively minor and treatable. I have incredible family and friends who lend us unending support. I am SO LUCKY!

Thank you, all of you, for reading this and for hanging in there with me 🙂 I PROMISE to update again soon! I’ll leave you with the words of the ever-wise Albus Dumbledore:

“Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

8. A Lesson in Patience *Info Post*

First order of business: My surgery has been postponed- it will NOT be on April 22nd. I will explain more later.

I have been neglecting my blog duties and for that, I sincerely apologize. The last two weeks have been crazy, and I didn’t want anyone to worry before we knew for sure what was going on. Let me catch you up:

The CT-Scan of my neck a couple of weeks ago showed a lump lower into my chest cavity, on the area they call the “mediastinum.” Insert a week of complete panic, in the midst of trying to find Clint a new car (the original deal we looked at didn’t work out). I knew that there was a possibility that the cancer had spread in the year that I’ve known about the nodule, but to hear about an extra 1cm by 4.5cm “mass” was, in reality, much more terrifying. Was is an extension of the thyroid cancer? Was it a different kind of cancer that requires more aggressive treatment? Would my surgery be more involved than a simple 2 inch cut?

I started to retreat into myself the more I panicked. My ENT surgeon (Dr. T) suggested I see a thoracic surgeon (Dr. M), so I made an appointment immediately. On the day of my appointment, I got a call from the office saying that Dr. M wanted a more in-depth look at the mass. Off I went to schedule another CT-Scan, this time of my chest. Each little step took days, and each one of those days seemed to stretch on endlessly before me.

Finally finally finally I had the chest CT-Scan done and I waited (again) to talk to the thoracic about it. I scheduled a second appointment. Apparently, the mass they saw is my (enlarged) Thymus. Your Thymus is a gland that works with the immune system. According to Dr. M, since I am young there is absolutely nothing to worry about, but he does want to watch it for a week or two.

HUGE sigh of relief. I told C: I think Thyroid Cancer is about all I can handle right now!

Somewhere in the Universe, fate laughed at the temptation I dangled in front of it.

The relief didn’t last long. The surgical pre-screening tests uncovered another surprise that requires a bit more investigating (unrelated to the cancer). It’s nothing serious, but I’ll have to take a medication for a little while and we will just watch it and… you guessed it: WAIT.

So: no surgery yet. We will re-visit it in a few weeks. Luckily, Dr. T assured me (repeatedly) that waiting poses NO danger to me because Thyroid cancer grows very very slowly (years vs. months).

I have asked myself over and over again why this might be happening to me (I believe that everything happens for a reason), and I seriously think one of the reasons is to force teach me to be more patient.

I will probably go radio silent for awhile. As soon as something changes I promise to update immediately! In the mean time, we will continue with our lives. I may not feel great in the coming weeks, but I will certainly be enjoying the warmer weather!

I cannot thank all of you enough for your continued support and well-wishes. It means so much to us. C and I feel incredibly lucky to be surrounded my so much love, hope, and encouragement. It makes all the difference in the world!

All our Love to each and every one of you,

Em