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.

Three weeks + 1 day

Just a quick update:

I know more today than I did yesterday, but still very little about what the next months will bring and/or how aggressive treatment will be.  I have some labs pending that dictate how we proceed, how successful the surgery was, and how often I get to go back to visit the north side of Appleton for doctor visits. 

{Perk: Copper Rock Coffee shop in the medical office building.}

My endocrinologist felt at least one unsavory lymph node. He also made sure to ask Issac if he could get him a good deal on a mortgage ;) I have been referred to radiation oncology and will see them next week about a radioactive iodine treatment (more on this later) that will occur somewhere in the first half of December.

I just spent the last couple of hours trying to figure out what I will be able to eat (as well as what I will have to avoid) over the next 2-3.5 weeks. To prepare for the treatment, patients have to be on a low/no iodine diet. Quick & very basic lesson: Thyroid cells eat iodine. Thyroid cancer cells eat iodine. Other cells leave iodine alone, for the most part. Iodine comes into our bodies via our diet, sometimes things just contain iodine (like milk) and sometimes it is added by way of iodized salt. By starving the thyroid cells of iodine (by consuming a low/no iodine diet), their little bellies are empty. When I take this radioactive iodine, the cells are so “hungry” for iodine that they will take up more iodine than they would if I had not been restricting the iodine intake in my diet. Then radioactive part of ‘radioactive iodine’ will then blow up these thyroid+thyroid cancer cells. Oversimplified, but you get the basic idea.  So anyway..   I was making a list (imagine that..) and have one column of “Avoid This Like The Plague” and another called “I Think This is Okay..” I had to laugh aloud when I realized the “Eat This and Waste Tons of Money on Expensive Radioactive Treatment”  list included potatoes, gravy, meats injected with salt water broth, red dyes (often found in canned cranberries), butter, molasses, chocolate, and most breads. Sounds like I will be having a very “interesting” and non-traditional Thanksgiving dinner this year! I’m having a much easier time finding out things that I cannot eat versus those that I can. I have found sources that state that wine is approved on a low/no iodine diet, so if all else fails I will munch on carrot sticks and sip Cabernet for three weeks. 

::Diversion of the Day::

Photo 1: Intention of pinto bean sensory bin
Photo 2: Ingrid's interpretation

Three weeks.

{I hope the two smallest Olson girls forgive me for high jacking this little family blog, previous to now all posts revolved around sharing toddler antics and updates.}

I haven’t meant to leave anyone hanging, but honestly nothing relevant has been going on since I had that second surgery on the 17^thof October. It doesn’t do me much good to speculate on what I *think* will happen next, and although I’m pretty sure I know what is coming my way I will refrain from jumping to any conclusions. I do have an appointment with an endocrinologist tomorrow that should be quite telling in terms of staging and what the next couple of months will look like in terms of treatment, scans, etc. … so I am feeling both anxious and dreadful and hopeful about tomorrow and hopefully will leave feeling at least a small bit of direction for what comes next.

I also think that maybe it has taken me three weeks before I was prepared to sit down and write something because sitting down to write something means that I had to slow down and admit that this is actually happening to our family right now. It has been so much easier to just go on with each day as it was before I got that phone call three weeks ago today.  Some might call this “denial” or “avoidance,” but I guess I feel like at this point in the process.. at the “in between” stage that we are in where the surgery is complete and the diagnosis has been delivered but no treatment plan has been set.. I feel like someone in my position in the 'in between' has two choices: you can spend your time worrying and hemming and hawing about what might happen and letting that word "cancer.. cancer.. cancer" bounce around in your head and worrying what the future will bring, or you can spend that ‘in between’ time spending quality time thinking about and doing those things that keep you positive. Lucky for me, I have two EXTREMELY busy kiddos that have served as the ultimate positive distraction. To those of you who have offered to watch the girls for us, I promise there will be a time in the not-too-distant future where I will take you up on such an offer, but honestly right now their busy little lives have been a welcome distraction. I can honestly say that there are days where this whole cancer diagnosis doesn’t cross my mind until they are both asleep. I'm in a good and positive place, and feeling like, "Let's just get on with this treatment thing.."

Most often, I am asked how I am feeling. Right now, I feel fine. Not great.. just ‘fine.’ :) The surgeries were relatively uncomplicated and the recovery was as expected: it took a week or so, but eventually the range of motion in my neck was back. Even my scar is looking good, see:

This necklace was a gift from a great friend. It makes me smile.

The only physical thing keeping me in the “fine” category and not “good” or “great” has been the removal of my thyroid. This little gland is one of those things you cannot fully appreciate until it is gone, as it seems to control everything from energy level to metabolism to body temperature regulation. And while there are synthetic thyroid replacement medications, their half-life is long so it takes weeks and weeks to tweak dosages and get a person back to where they feel like themselves. For now, I have ‘good’ days and ‘fine’ days.. in general, my gas tank just runs out of gas earlier than usual. Instead of running at full-speed-ahead until my head hits the pillow at 1am, I have days where anything after 3pm is a challenge. Issac jokes that I am struggling with this because I now have to sleep "like a normal person." Previously, I ran consistently on about 5 hours of sleep.. but now my brain isn’t tired, but my body is exhausted. I have been drinking coffee like nobody’s business because it seems to help a bit. I am also thankful for my slow cooker, because I have been able to do some cooking early in the day while I still am running at full speed. {Please forward any favorite slow cooker recipes my way! I love soup, and feel that both fall and winter in Wisconsin are made for meals of soup& bread!}  Emotionally and mentally, I am really feeling good. I feel guilty about doing a poor job of responding to messages, phone calls, emails, USPS mail. I hope you all know how much your thoughts and kind words mean to me, the messages you have sent cross my mind at various points in this process and leave me feeling very supported.

I guess what I am saying is that I’m doing well right now.  I’m anticipating some rough patches ahead in December, and I get a little emotional and sad when I think that it will quite likely affect both our Thanksgiving and Christmas holidays, the very much anticipated wedding of some dear friends, and  the celebration of both Amelia & Issac’s birthdays. I know everyone understands, but this doesn't make the guilt any easier for me. 'Tis a busy time of year to throw some cancer into the mix..

I realize many of you have questions and I look forward to answering them (up next: “How did you know something was wrong? Should I be concerned about my own thyroid?” and “How fast did this all happen?”) but it is time for me to catch some sleep before these small people arise way too early tomorrow morning: daylight savings time is SO hard to explain to a one year old.

Much love and appreciation of your kind thoughts,

Nicole & Family