four months out.

So, this week Thursday marks four months since my diagnosis. In some ways, it feels like October 16th was years ago. In others, it really doesn't. I still haven't been back into Gordman's, so I guess I may still not be over that initial painful shock of that inopportune phone call. Or maybe I just don't need any more bargain home decor, I'm not sure.

I feel bad that it has been so long since my last update about what has been going on. If I'm being completely honest, writing a status update has been really difficult for me. I'm not sure why. It has been on my mind and I bet at least once a day I feel guilty when someone says something like, "I'm just wondering how you're doing.. I haven't heard anything.. ..." I apologize if I kind of fell off the grid, I really do. I promise that I have read all of your wonderful messages (sometimes twice and three times!) but I haven't been ready to talk about it.. like really talk about it.

In high school once, we had this speaker come in to talk about something (I seriously have no idea what..) but he started off by trying to motivate us to always convey a positive outlook by answering "Good!" or "Great!" whenever we were asked, "How are you doing?" He said, "No one really wants to hear that you're 'just fine' or 'had a rough morning'.. they're just asking you that to be polite." I don't know why, but this kind of stuck with me, and I hate that it did. I think there are people out there who really do care if you had a rough morning. My 16-year-old self probably distorted this message completely; I don't think this guy was totally off the mark. Because he's sort of right: no one wants to hear every single day that you're having a terrible day or that you despise your job, or any of those other negative comments that eventually start to wear on a relationship. Still, I can't say that I would rather have my friends answer "Great!" when their answer is really, "I'm okay.." I like to think that I have always been a pretty open communicator, but sometimes the stuff that needs communicating isn't exciting or funny or positive and it is just kind of "Eh.." That is kind of where I have been. Nothing bad, certainly nothing to complain about, but a little bit of the winter doldrums combined with some lack of energy from my lack of thyroid. Throw in two toddlers with a stomach flu and BAM: that's February. ;)

Anyway..  I think that time should just stop when bad things happen: a little break to allow for some processing, some grieving, time to prepare for what comes next. I would say that I just needed some time to process this whole turn of events, but I would also be lying if I said that I have been sitting here doing a lot of processing. Pretending it isn't happening would be more accurate. I haven't quite decided if this is completely a terrible thing.  Readers out there with Ph.D.s in psychology (I know there is at least one of you.. hello smarty pants!) would probably examine my psyche and use some fancy terminology, but suffice to say I am probably wavering somewhere between avoidance and denial. It's weird, and I'm sure someone can tell me why my reasoning is all kinds of wrong, but I just can't wrap my head around why I should grieve about this cancer. It's kind of like if I do that, then I let the cancer win. It has taken up enough of my time already in surgeries and quarantines and doctor's office waiting rooms. I'm lucky: I have a cancer that allows me to not be in the hospital, I don't feel physically ill, no chemotherapy, I have my hair. It is nearly invisible to an outsider who doesn't know me personally. Not everyone is so lucky -- so many diseases and cancers and accidents, so many scary scenarios. Even if the very worst case scenario happened and I succumbed to my thyroid cancer, I still don't think I would look back and think, "wow.. I should have taken more time to process this." I think I would be saying, "I should have taken more time to play Go Fish" and "I should have rebooked that trip to Italy." Who knows, maybe I have it all wrong and I should be doing more 'processing' and worrying and stressing, but this is working for us right now.

So, since my last thyroid cancer update:

• I completed the radioactive treatment quarantine, visited the resident physicist to ensure that I was safe to go home and snuggle my wee ones, and did just that. 
• Spent an amazing mini-vacation in Wisconsin Dells with Issac and the girls, compliments of our very kind Minnesota friends. We swam. We laughed. We made memories. Amelia is still talking about it. 
• The day we returned from Wisconsin Dells, I had an uptake scan. This scan looks for the areas in the body where the radioactive iodine was "absorbed" during treatment.  Radioactive iodine attaches to thyroid cells (good thyroid cells as well as thyroid cancer cells). Similar to how a metal detector beeps when uncovering metal, the scan lights up in the areas where the radioactive iodine is hanging out in the body. Physicians use this information to monitor for potential metastases (spread of cancer). All of the "lights" should be in the thyroid bed in my neck. If there were "lights" elsewhere, it might signify spread of disease. My scan looked good. I also got to take a nice 1.5 hour nap, which probably hasn't happened since 2008.
• Issac had a birthday. It was pretty uneventful, but I did make him some kick-ass tacos and the girls made and decorated a green Rice Krispie treat "cake." Issac likes Rice Krispie treats probably more than any 31 year old man should admit to. If he had a blog, it might be all about Rice Krispie treats. 
• Amelia turned 3. I felt bad that her annual "Breakfast with Santa" was put on hiatus this year, but I wasn't sure where my energy level would be at and didn't want to overcommit to hosting an event if it wasn't meant to be. She was okay with it because she was still on Cloud 9 from all of the watersides.  
• Amelia's amazing little preschool closed it's doors. This was super sad for all of us, but the silver lining was some extra quality time together. 
• We spent a wonderful extended Christmas with our families. Many laughs. Very special.
• I had a followup with endocrinology in early January. They told me some very disappointing news - one of my lab results was not awesome. It wasn't terrible, but certainly not where they wished it to be, optimally. In light of this, my next big diagnostic scan will be sometime in December 2013. I'm not going to say that this was the worst news ever, but I took it pretty hard that I am going to have to walk around for the next eleven months wondering if I still have cancer or not. It seems like an exorbitantly long amount of time to wait to hear an "all clear." I decided that afternoon that 2013 will not be defined by "waiting for December" and again, I will fall back on my semi-support of avoidance/denial tendencies here and continue the 'business as usual' attitude. I will be seeing them frequently (like every-four-weeks frequently) as they continue to tweak my medications into the optimal ranges. Many pokes. Many visits to friendly neighborhood pharmacist.  
• My scar - it's healing pretty nicely, I guess. I haven't been doing anything crazy like putting all kinds of fancy lotions or creams on it. This is probably mostly because I'm lucky to remember to wash my face before I go to bed at night :) I'm not concerned about the scar, really, and the only time I felt self-conscious about it was immediately after surgery when I still had the creepy Frankenstein stitches in. Luckily, that was in October so I just kind of looked like I was very into Halloween. 

Yes, those are little snowflakes on my shirt. It's 10pm on a chilly February eve, cut me some slack :)

So, that's what's new. Or, that's what's going on. Nothing is really new, but I guess this is one of those times for the cliche: "No news is good news." 

five.

week five of fifty-two

 Pool Party, Chicago-style.

"Hey guys, follow me!" - Ingrid

four.

week four of fifty-two

through the eyes of babes: for my children... once a week... every week in 2013

"Grandpa Bill and Grandma Mary came to visit. Even more people to read to me. This is incredible." 

-BabyIngrid

three.

three / 52
through the eyes of babes: for my children.. once a week.. every week in 2013
 "Every day, when my clock says three, I can choose a snack!" - Miss Amelia

I'm one of those moms who mixes the "good cereal" with the healthy stuff.
If only we could get Issac to do the same with his bowls of Trix,
the boxes of the "good" stuff would stick around quite a bit longer! 

one + two.

I have never been good at having my New Year's Resolutions up and running by January 1st. With 2 family birthdays in December, quickly followed by family Christmases and New Year's with friends, I'm lucky to have enough groceries in the house to make dinner on January 2nd. But who am I kidding? Even before kids and the December-birthdayed husband, I still delayed my resolutions until somewhere around the end of January. So really, I'm ahead of the game this year.. or that's what I'll keep telling myself, anyway.

I have not finalized my goals and vision for 2013, but I do hope to make progress in taking notes and documenting pieces of the girl's little lives. I guess there's nothing like a little cancer diagnosis to make you check yourself (and your mortality). It blows my mind how once a week or month, something that they do or say seems so funny or precious that I could never ever forget it. And alas, a week or two later, I have no idea what it was that was so funny.. or I forgot how they adorably mispronounced something. I chalk it up to lack of sleep, coupled with quantity of hilarious/adorable little moments, and the chaos of our somewhat over-schedule lives. Each little lady has an email address (see: Email for Babies) that I am good about documenting "big" things (like, "Hey.. you got your first tooth today" or "Today was your first day of school") but I always intend to email them some heartfelt thoughts on life.. but then I fall asleep or something. So I'm working on that. I want them to know what life was like when they were so little, before I forget and have to start worrying about things like boyfriends, Facebooking teenagers and covert text messages.



Anyway, this year in conjunction with documentation, I'm joining some friends of mine in the blogosphere as we take 52 photos, 1 each week, for the rest of the year. Obviously, I missed week one, but that certainly doesn't mean that I'm without photos from 1/1-1/8. We'll just double up this week one time and roll with it. As for the topic, in contrast to Instagram's "little bit of this and a little bit of that," the intent here is to share a highlight from the girls themselves. I'm constantly reminded that the perspective of 3 and 1.5 year olds is vastly different than that of their parents - Issac and I don't squeal with excitement when we pass windmills (wind turbines) on the drive to the grocery store, or get overwhelmed with giggles at the word "re-fridge-a-re-rator." So, without further ado.. 

one / 52

"through the eyes of babes: once a week.. every week in 2013"

Amelia's view while lying in bed: 

"I don't know what it says, but it is pink and has sticks so I like it 

and I see it all of the time every day and stuff" -A

____________________________________________________________________________

two / 52

through the eyes of babes: for my children.. once a week.. every week in 2013

First Dentist Appointment: 

"They gave me a toothbrush! A Toy Story toothbrush, and Ingrid doesn't have enough teeth to go to the dentist and mine are all shiny and sparkly and I have twenty teeth!" -A

Some other 52 Week Photo Projects to check out: 
buffaloes & butterflies and her incredible brood of seven!
bleubird's beautiful babies (how's that for alliteration?)  sunnylit style's fashion-related photos
thesmiths : mr&mrs version

Radioactive Quarantine: Here we go..

First of all: thankyouthankyouthankyouthankyou for all of the outstanding book, movie and activity suggestions. More on what has been keeping me busy in a minute, but I wanted to make sure that if you only read one thing, it was that I THANK YOU for your thoughtful messages and suggestions!

Since my last post, I have done quite a bit of waiting. I don't like idle time, though, so I certainly was not waiting in my house. Between appointments and bloodwork, the girls and I did some preparing for the holidays and tried to get out and go for walks before I was relegated to solitary confinement. The girls have been handling all of this extremely well and Amelia loves to see my bandaids when I get home (which makes her more courageous than her very squeamish father). After a few lengthy waiting room experiences, I finally packed an "Appointment Tote" containing a few snacks, some of my own magazines (thanks, Kim!), my smartphone, and a small knitting project. Of course, now that I am somewhat prepared, I haven't had as many long waits -- go figure!

One of the things we had been hoping for was that my TSH (a thyroid hormone) would be high enough that I could avoid the painful and expensive injection alternative. If you take out someone's thyroid and/or they stop taking their thyroid replacement medication and/or the thyroid is not working as hard as it should, the body responds by making more of something called TSH (thyroid-stimulating-hormone). So they took out my thyroid, I stopped taking the medication, and we hoped the number would come up to 30. At 30, your body is ready for the radioactive iodine treatment. Week 1, the number was 14, which was very promising.. but at Week 2 we were only at 18, so injections it was. Alternatively, I could have waited a few more weeks for the TSH to come up on its own, but then we ran the risk of these December treatments and followup scans running into Amelia's birthday, Christmas, and (importantly) the New Year. Certainly we will have plenty of fun followups and things in 2013, but I prefer to pack as many as possible into this deductible-satistfied 2012. And as it turned out, the injections in my rear end were not as painful as I would have imagined, but as one of my friends reminded me: "I wouldn't say that they weren't painful until you see the bill for them." Funny.

In addition to the pokes, my radiation oncologist added two additional medications to my regimen to prepare for radioactive iodine treatment: lithium and pilocarpine. Quick story: When I was in pharmacy school, I did a summer internship in a community pharmacy. The pharmacist used to say that he was going to sweep the pharmacy floors every evening and the interns had to try any tablets or capsules he found and try to guess what they were based off of how they made them feel. He was joking (I think??) because none of us ever did this, but this story certainly stuck in my memory this past week.

When I picked up my prescriptions, I  glazed over the information I had seen a hundred times, "may cause upset stomach if taken on empty stomach.." .. "may cause blurred vision, use caution when operating a vehicle.." Pharmacies are mandated to give you this laundry list of side effects that could possibly happen.. it is so extensive that I might bet that you can find "nausea" listed for ANY medication. I knew this stuff. I knew these medications. But I didn't. In my case, lithium is certainly not anything hope to ever be on again. The first couple of days were fine (thank goodness, because we were able to fully enjoy and celebrate the wedding of our dear friends!!) but by day 2.5 or 3, I was dizzy and nauseous to the point that thinking about taking my next dose made me dizzy and nauseous. Last evening was my final dose, and I am just now starting to feel less dizzy.... and more capable to jump into one of the books that I brought along!

For those who are wondering, the lithium was used to augment the radioactive iodine treatment. It takes some time to build up to a therapeutic level of lithium in the blood stream, so I started it five days before treatment. There are frequent blood tests to monitor if levels are too low or too high, and once that was fine tuned I was ready for treatment. The pilocarpine is used to protect the glands from radioactive iodine. It helps to flush out radioactive iodine from the salivary and sweat glands. It can cause side effects like flushing, sweating, et cetera; but the most bothersome-but-expected side effect was excess saliva. Nausea + Excess Saliva made for an overall unpleasant couple of days. But that's done now, so hooray for that!

So, I'm radioactive right now. Apparently. I don't feel any different than I did when I walked into that metal walled room, but I trust that something is going on. The nuclear treatment portion of this process was quite streamlined: walk in. get pregnancy test. wait for results. sign wavier saying you won't get pregnant for at least a year because you might harm baby. go over rules of being radioactive. take pill. go hide in proverbial cave for 8 days.

Now, if you have to be locked in a room for over a week, I hope you have an awesome sister with an adorable little studio apartment who is willing to displace herself. Isn't she a great decorator?

As I mentioned.. I'm feeling better today. Monday and Tuesday were not my favorite. Wednesday and Thursday I was very dizzy and nauseous, so I watched some mindless television and a few mindless movies. Today I am starting to feel more like myself! I have a stack of books and articles that I have been looking forward to, and a few Christmas projects as well.

I am sad to be missing some awesome events this weekend, but looking forward to the ones that I WILL be able to be a part of. We are beyond thankful for some friends who generously gifted us a trip to Wisconsin Dells a few days after I return back home. Aside from being an incredibly awesome gesture, this is also serving as something that Amelia has to look forward to during a tough time. She knows that I am gone and that we can talk on Skype, but this has still been sad for her. She gets very excited when we talk about going swimming after mom gets home!! A thousand hugs to Minnesota to the Brezinkas!

Up next: Tomorrow I will begin the thyroid replacement medication that I will take for the rest of my life: a simple-but-important little tablet taken (on an empty stomach) each morning. It contains synthetic thyroid hormone to replace the work that my thyroid would be doing if it was still around.

Equally important, tomorrow I will also be reunited with coffee creamer!! And other things, obviously, but that tiny splash of coffee creamer has been one of the most painful concessions. The low iodine diet that I have been on for the past 3 weeks will conclude tomorrow and I am free to eat whatever I like.  Those of you who know me well: I haven't had a piece of bread in three weeks. ME. No bread. Unheard of!!

Low Iodine Dinner at the Van Handel Wedding!

The limitations of the diet were not so bothersome until Wednesday. All of a sudden I started craving things (Egg McMuffins?!? Chipotle?! Lasagna!!) that I could not have, and my only option was to make a Wishlist for Saturday and beyond. I hope my bathing suit still fits in Wisconsin Dells!

House Arrest (and a favor to ask!)

As a part of my treatment, I will be undergoing radioiodine ablation on November 28^th. The goal is that the radioactive iodine will ablate, or destroy, any thyroid cells in my body. You might be confused at why there might be remaining thyroid cells when the purpose of my first two surgeries was to remove the thyroid gland: since it is a gland and not a solid organ, removing the thyroid is not like taking out kidney or a tooth. The thyroid is wrapped around your esophagus, so removing it is like trying to scrape room temperature butter off of corn on the cob: most of it is gone, but little fragments remain that are impossible to remove without damaging my esophagus, voice box, etc. I had a blood test done (thyroglobulin) which indicated that there is definitely thyroid tissue remaining somewhere in my body, but it is impossible at this point to tell if that number represents remnant thyroid cells in the thyroid bed (still some butter on the cob of corn) or if the cancer has metastasized into other areas like lymph nodes. If the treatment works, blowing all of the thyroid cells up with radioactive iodine will ablate that mystery thyroid tissue, wherever it is. The treatment is not supposed to be painful or bothersome, though some experience nausea, headaches, and achiness in their neck. There are rare scary possible side effects, just like there are with everything else, but nothing scarier than untreated cancer floating around my body. 

To prepare, I stop taking thyroid replacement medication. Yikes. You see, I have no thyroid – so my body depends on synthetic thyroid replacement to regulate things like metabolism, energy level, concentration, temperature regulation. Without that synthetic regulation for two weeks, I may become a very sluggish and confused version of myself. I am already cold all of the time, so poor Issac’s blood pressure is going to rise every time he walks by the thermostat for the next 2 weeks.  I have to take a few other medications in preparation as well--lithium and pilocarpine, for all of you medicine-curious folk—the former to possibly increase efficacy of the treatment and the latter to protect salivary glands from long term side effects. I now know my community pharmacist by name, and currently have a bag of vitamin and medicine bottles that would make a medicine reconciliation pharmacist nauseous.

Another way you prepare is via your diet. I outlined the basics last week. I have started my {crazy} iodine-free diet, which makes me appreciate the small arsenal of convenience foods we all use on a daily basis. Example: Last night I didn’t have a fresh lime (gasp!) as I wanted to add some lime juice to the corn/black bean/squash concoction that I made for dinner – but no luck, because even a bottle of lime juice has preservatives. No dairy or milk products. No soy. No bread, unless you make it yourself. Nothing preserved or packaged. If it says “salt” on the ingredient label, it’s out (because that salt could be iodized). Sodium is not a problem, but iodine is. Iodine isn’t listed on nutrition facts, so you just kind of have to know what products contain iodine (broccoli, spinach, strawberries, etc) and what doesn’t. It is pretty restrictive, but not impossible. Impossible if you’re trying to eat out or go to someone else’s house for dinner, however. I’m trying to come up with a sweet sack-lunch idea for our good friend’s wedding next weekend, but I did promise him I wouldn’t bring it in an Elmo lunchbox.  Thank heavens for my friend who delivered me her bread maker tonight, for now I will celebrate with a toast (pun fully intended). Three days without bread for this girl is UNHEARD of!

Anyway, I stay on this diet until three days after I become radioactive. I have already started my “first meals” wishlist. Oddly, the diet itself is not the problem – it is the combination of exhaustion from lack of thyroid hormones + having to cook everything from scratch. I don’t know anyone who says, “Hey.. I feel exhausted.. I think I’ll cook a meal from scratch!” It’s more like: “Hello, Cy’s Asian Bistro? I would like to order some take out.” Luckily, I have some awesome friends who promised to follow recipes to a T. I’m getting the feeling that I’m going to be forever indebted to many many many many people, which is a very new&awkward-yet-incredibly-comforting feeling.

The kicker of this whole treatment is “The Quarantine.”  You see, after I take this radioactive iodine, I will be radioactive. Like set-off-alarms-at-the-airport radioactive. This is dangerous to people I come into contact with, because my radioactive iodine can also harm their thyroid. I must maintain a distance of six feet away from another person for 8 days. I need to use a separate bed, bathroom, and eating area than that of other people. It is especially important to avoid small children, not because I will harm them more, but because they tend to get physically closer than other adults would (climbing in your lap, hugging, carrying, etc). I’m going to be very sad about being away from my girls for this long – but at the same time am very concerned about the potential risk to their little thyroids. As I have explained it to some, if I were instead leaving for a pharmacy convention I would miss them just the same, but the longing would be less because I would be busy with work and traveling and networking with others. Sitting in a room, alone, 15 minutes away from my house, 3 weeks from Christmas puts a bit of a different spin on it, but I am hoping to find a way to Skype or video chat with them somehow. I don’t know how much of this Amelia understands, but I can tell you that she is pretty gosh darn excited that Grandma Mary is coming to stay for more than a whole week. She even told the cashier at Target today about it!

I have lovingly displaced my sister from her studio apartment and will be camping out there solo for the duration of my quarantine.  The radiation oncologist I met with was extremely empathetic to my desire to “get it over with” and to be home and able to snuggle my family by December 19^th (Amelia’s third birthday). The routine chest xray and neck ultrasound on Tuesday came back clear, so everything should run on schedule so long as my TSH rises enough in the next week. If it doesn't, I will be relegated to taking two big & expensive shots in the behind the two days prior to ablation to ensure that my body is good to proceed with treatment.

 

If you know Issac, you know he isn’t a huge fan of Christmas décor. In lieu of a house full of holiday decorations, we just have one big tree. A compromise, of sorts, but we sure do adore our one big tall Christmas tree! Since I am going to miss out on two weeks of holiday happenings, I coerced him into putting our tree up a bit earlier than usual.  Though the tree is not fully trimmed, the two feet closest to the floor are covered in ornaments, and the girls had a blast!

So now.. the favor:

Just under two years ago, a good friend of mine was placed on bedrest. She was pregnant with her second and bedrest was the very last thing she wanted to be doing. At the time, I was working way too many hours a day, sleeping way too little at night, juggling Amelia’s newfound toddler-hood and had literally JUST found out I was pregnant with Ingrid. To me, bedrest seriously sounded like a vacation. I was actually jealous that she was going to have some “forced relaxation.” So jealous, in fact, that I sat down and wrote her a detailed list entitled, “Things I would do if I were on Bedrest:” and delivered it to her with a stack of magazines that I didn’t have time to read.

The grass is always greener, I suppose J In an effort to view it in a positive light instead of a negative, I’m less than two weeks away from embarking on a “forced relaxation” of my own. I am trying to prepare ahead of time, as I imagine the lack of thyroid hormone will start to wear on me more and more between now and the 28^th. If you were going to be locked in a room for eight days by yourself, what would you bring? Which books would you read? How would you keep busy to avoid thinking about the fact that you are locked in a room for eight days? Help me out here, people.