Kate Stowell

Lots of news as usual. Starting with the biggest:

1) My parents bought a house here! It’s a 5 bedroom colonial 0.3 miles from our house. They’re coming out around Thanksgiving to stay for a week or two and gets some things settled. Right now my dad is still working for Kaiser and it may be that they’ll stay in Oregon until he retires in a few years. If that happens the house will be rented in the mean time. Send positive thoughts he’ll be offered a job in the DC area!

2) My cousin Tiffany had her stem cell transplant last month. Here’s to a healthy new cancer free life. Thank god us Potter’s are all tough and hard to kill :).

3) Passed my RNC exam. The RNC is a national certification in Neonatal Nursing. You’re eligible to sit for the exam after 24 months of practice as  NICU nurse. Since most of us military people rotate before then a lot of Navy Nurses never get the chance. So there is an upside to being medically stationed a command forever! On that same note, the other day in a code on a 23 weeker I realized halfway through the reason I didn’t see the fellow was that the fellow WAS there all along…I just didn’t realize it was her because I still remembered her as the intern from four years ago! Yikes…I’ve now seen a whole intern class go through residency and graduate.

4) Todd and I are going to the UK and France next summer. I am SO excited and waste a good hour or two every week researching where I want to stay and what I want to do. I’ve already been to London once and seen a lot of the top touristy stuff, so this time I want it to be a little bit different. Definitely on the list: Dr Who tour of Cardiff (Wales)and eat at a really old pub.

5) And on the list of the disgusting: Oliver has giardia! Blech. The only good thing is we didn’t discover it because he was symptomatic- it just showed up on a routing puppy stool screen. Apparently it can takes weeks to treat. Greeeaaat.

6) I suppose I couldn’t end the list without mentioning thyroid cancer somehow or another. The last few days I’ve had this awful salty taste in my mouth between meals. Imagine tasting seawater every so often with no warning. Yet another potential side effect of the RAI. Somewhat comfortingly another woman on the thyroid cancer Yahoo listerv told me she had the same thing happen months after radiation and that it eventually went away. I hope it does for me too! Other than that I’m feeling well enough, and I won’t have any more scans/tests until this fall.

Hope everyone is enjoying their August,

Kate

It’s been awhile since I’ve updated but not because anything bad has happened…I’m actually doing ok. Just busy with life! I had a tg level drawn about a month after RAI and it came back at 0.57. Ideally it would be 0 meaning that there are NO thyroid cancer cells left, but apparently it can take about 6 months after surgery or RAI for cells to completely die off. I’ve had my Synthroid adjusted once and am currently taking 175mcg per day, although that may change since I just had my TSH checked again.

In non-thyroid cancer news the kids are doing well. Daniel has started walking a little bit by himself but still prefers to crawl. Ethan is now in the Dinosaur classroom which is age 2.5-3.5 years. My mom came out to visit last month and it was wonderful. They are still considering buying a house here and I hope that happens.

Friday we are getting a puppy. The new puppy is a bouvier, a type of belgian cattle herding dog. Right now he’s a 10 lb ball of fluff but when he’s grown up he will be close to 100 lbs of shaggy black dog! We found him through a friend of mine at the dog park. I hope Annie is ready.

Lots of pictures to post tonight and many thoughts. First of all the good news. I had my repeat total body scan after my RAI today. I’ve been so nervous all this week it’s almost made me physically ill…even though the first scan was negative this one is done with 150 mCi on board vs. 5mCi so it is a much more definitive scan in looking for distant metastases. The first two scans showed nothing too unexpected but my nuke med doctor said being a woman I had a lot of uptake into the chest so they wanted to repeat with lateral images to totally rule out the possibility of any lung mets. I think I about died right there I was so nervous.

Try and picture any test taking anxiety you might have an multiply by 1,000, with this being a test that can determine whether you will live or die except that you have no control over it. That’s maybe a fraction of what it feels like to wait for a cancer scan.

They did two additional lateral views and about 15 min. later called me back. Here’s where I have to put a plug in for Navy medicine…in the civilian world they probably would have done the two initial scans and called it quits. However this being military medicine, since the scan adds no additional radiation and I had the time they were willing to go the extra mile to DEFINITIVELY prove to myself and nuclear medicine that I have NO LUNGS METS. On the lateral views you can clearly see the breast tissue overlaying the chest wall. Breast tissue- scattered uptake throughout. Chest- per nuke med completely clear! I was squeezing Todd’s hand so tightly when we got the news.

And just because my nuke med team is so thorough I am going back Monday to get one more abdominal image done to prove the one remaining bright spot is stool in the large intestine vs. a bone metastasis. One big step to being a patient with “No evidence of disease”. The next step will be negative thyroglubulin levels at 6 weeks and 6 months.

Now the sad news. Please say a prayer for my cousin Tiffany and her family this weekend. She needs all the good thoughts she can get this weekend since she is in intensive care and on a ventilator. Until her body heals up some more they can not go forward with the bone marrow transplant she so desperately needs.

And now some of my life in pictures:

The boys

The family

Grandma

Annie

Synthroid- 150 mcgs. Day 1. Also Day 1 of back to real food!

I decided it was time to update since it’s been a few days…I haven’t felt like writing before because I’m just so darn tired from the hypothyroidism and honestly I’ve felt a little bit down about the whole thing. However don’t worry, I think I’m pretty much done feeling sorry for myself :).

Basically on Friday I came in at 9am and was whisked right off to the scan room to do a whole body scan. Below is a CT scan picture of a thyroid…you can see the trachea and the “butterfly” shaped thyroid:

Here’s a picture below of what a radioiodine uptake scan looks like. It takes about 30-40 minutes and you lay flat and very still. It’s not as claustrophobic as getting an MRI done, but they do still bring the scanner very close to your face.

Based on my scan they decided to give me 150 mCi. Happily my scan showed no signs of distant metastasis, but it did show POSSIBLE local lymph node metastasis right above my trachea. However it was so close that they can’t be entirely sure, and from what I understand that shouldn’t affect my long-term survival rate anyway.

If you are really into some of the science behind it, a fellow thyroid cancer survivor wrote out the calculations for a 150mCi dose of RAI figuring out exactly the weight of radioactive isotope in the little special pills : 1.2microgram

This is not me, but here is a video of a woman getting her dose. This is pretty much exactly how it went for me too. The RAI uptake room

A lot of people have minor side effects such as nausea, but I actually didn’t notice much difference. The only effect I’ve had so far is a sore throat but the nuclear medicine doctor warned me it would be expected as my remnant thyroid tissue dies off. After I was cleared by radiation safety to leave Todd whisked me right off to a hotel where I will be staying for 5 days.  Since we have little boys at home I didn’t want to possibly expose them. Basically I have been hanging out in the room by myself, taking lots of showers, and drinking lots of water to get rid of the excess radioactive iodine. Todd and my mom have been dropping off food as needed. The room is outfitted with a microwave and a tv and I pretty much keep to myself.

Sunday was Daniel’s first birthday and I was sad not to be home for it, but I did get to watch him eat his birthday cake on Skype. We also had a celebration on Tuesday before I started treatment so I didn’t feel as cheated. However as much as I wanted to be home I REALLY don’t want to expose the babies to radiation until my levels come down, and it is only a matter of days now until I should be “safe” enough. It’s still recommended to limit contact and I will sleep downstairs separately and limit contact, but at least I will be home to see them!

Well tomorrow is the big day. Initially I thought today was when I would be getting the whole body scan, but my protocol is a little different than I thought. Wednesday I got a 5mCi dose of I-131 and today I got a 2mCi dose of I-123. The I-131 came in a little test tube with a straw and the I-123 was a pill.

I have to admit I am a *huge* worrier so I’m a little freaked out right now because when they did the uptake studies today the tech commented that I had a “large” amount of uptake. What does that mean?!?!?! I expect to have some, because no surgeon can perfectly remove the entire thyroid remnant but does that mean I am shot full of cancer in all my lymph nodes? I sure hope not.

I was looking at my path report again after the thyroidectomy and I keep coming back to how large the tumor was…3.5cm. Anything over 1cm is considered “large” and it seems like 4cm is associated with a much poorer outcome. Blah. At this point I’m just counting on my extremely tough Potter family genes to get my through to a good outcome even if I have a poor prognosis.

Luckily even with incurable thyroid cancer you can live a really long time and be relatively symptom free. That’s what gives me hope.

Today is the day before my iodine scan starts…I’ll get the tracer tomorrow and go back on Thursday for the actual scan. The closer it gets the more nervous I am, but I do have full confidence this will turn out ok.

On a happier note my mom and I will transplant my tomatoe and bell pepper plants to a bigger container until they can finally go in the ground a week or two. I’m so ready for gardening! I also ordered a savanna seed mix from Prairie Moon. I’m not a total tree-hugging hippy but I am very into organic food and minimal pesticide use. We even do “green” cleaning in the house with a lot of white vinegar, lemon, juice, and water.

To further that goal I’ve pulled out almost all of the English Ivy garden growing in our yard and I’m replacing the back area by the fence with an entirely native plant and flower seed mix made for a woodland area. I also ordered native plants from the local conservation society. Todd’s contributing by building me a bat house :) (seriously!).

Just wanted to wish everyone a happy almost Easter! I am feeling pretty done with the whole hypothyroid thing and low iodine diet but doing ok. Wednesday and Thursday I am scheduled for the radioactive tracer and scan, and Thursday I will sit down with nuclear medicine to get the results and plan my ablation dose.

The boys are doing great. Daniel will be ONE on April 11th. I can’t believe it…it seems like we just brought him home from the hospital. We put a swing set out in the yard and they play almost every night out there.

The garden is coming along pretty well too. I have tomatoes and bell peppers seeded inside and have already put in quite a few perennials. Today as an early mother’s day present Todd and the boys put together a wrought iron bench in a new flower garden section of the yard. All it needs now is a little water barrel :).

I’m working this weekend and tomorrow we’re having a little Easter party so Todd is out buying some fruit to make a fruit salad. It will be my last day of work for at least a week or so. I am very proud of the fact that I have been able to work my full schedule up until right before my scan, no special exceptions or light duty. Plus it has kept my mind off all of the “what ifs”.

I just got the word from endocrinology that I can go forward with my radioactive iodine treatment. It certainly took long enough to become de-iodinated! I’m just waiting for a call back now from nuclear medicine to figure out when.

I’m scared and excited. Excited to be done, scared of what they will find (metastases?!?!?!) It’s supposed to be rare with PTC, but I’ve met several people now who have them. It seems pretty darn common if you ask me.

Still have not done my iodine treatment. Hopefully it will happen soon?

Overall the holidays were great. I can’t believe it’s January already! The boys and I just got back from a trip to visit grandma and grandpa Potter out at the beach house. I will post some pictures when I get a chance. While I was out there I got a chance to visit my cousin Tiffany, unfortunately in the ICU. She got a central line infection and went into septic shock but is now doing MUCH better and is home again. We got to keep her son Loghan for a day and he and Ethan had a very good time.

While we were gone Todd worked very hard on renovating our upstairs bathroom and it is now almost complete.  All that is left is to sand and paint the walls and install the new cabinets and sink/toilet. I will also post pictures for this when it is complete.

Annie is settling in great and has become a wonderful family dog, even though she snores like an adult with sleep apnea and chews up her bones like a beaver. She and Daniel are both teething!