Today marks three hundred and sixty five days since "before."
and obviously by "before" I mean "before cancer."
I knew today was coming, and I wasn't sure how I felt about it:
relieved?
anxious?
grateful?
frustrated?
I'm not really sure that I'm able to put an emotion on it.
I guess it would be better if I had some closure on the whole thing
if I were cured or in remission
but nothing like that will be known until after the myriad of testing (and the return of that horrible diet) I go through this upcoming January.
Still, for some reason, this date of October 16 is really a sticking point for me.
Because on Tuesday October 16 2012, while standing in the home decor section of Gordmans with my mom
watching Ingrid carry around a stuffed big bird in a plastic baby carrier,
I received a phone call from my surgeon.
I don't need a photo to remember this moment, but I have one
because let's face it, I'm kind of a fan of random snapshots.
So just after I took this picture
while my mom was deciding between some photo frames,
my phone rang.
I almost didn't answer, but I thought they were calling to reschedule my post-op appointment
to remove stitches from the lump they removed in my neck.
This surgery was supposed to be really benign:
my ob/gyn had found a lump at my post-partum checkup when Ingrid was 6 weeks old.
The specialist didn't think it was anything concerning but they biopsied it anyway.
That biopsy came back negative, but at my check-up eight(ish) months later,
the lump had grown.
I remember them telling me "whether it is benign or not, we need to take it out before it starts to bother your swallowing or become noticeable on your tiny neck."
It was decided that surgery was the best option, though I was really concerned with being away from Ingrid as I was still nursing - I chose a surgery date as far out as possible (4-6 weeks, I think) and started planning the logistics: weaning. someone to stay with the kiddos. someone to be here to lift the kiddos while I was on restrictions post-operatively. someone to cook food.
FYI: "Someone" = my mom. She rocks.
So otherwise that was a quick surgery - one night in the hospital and I was home with some lifting restrictions and some ugly neck stitches. It wasn't too sore or cumbersome. I might not even need to take thyroid replacement as something like 80% of people can function with just half of their normal thyroid! My mom was in town until I could pick up my small children and put them into their car seats. This was the day I was to go into the office and have those stitches removed, and after that my mom was heading home. But instead, the phone rang in Gordman's and it went something like this:
"Hello? Nicole? This is Dr. Specialist-person.. how are you this morning?"
"Uh.. I'm guessing I'm not doing that great if you are calling me personally." - Me
and so on and so forth...
The gist of it was that my in-surgery biopsies had come back cancerous and I needed to have another surgery tomorrow (!!) to completely remove the thyroid and any affected nodes. Tomorrow!?! It had taken 4-6 weeks to prepare for that first surgery and we now had less than 24 hours. The kids? The extended lifting restriction? I didn't cry, there was too much to do and furthermore I was in public. In a retail store. I'm pretty sure that when someone imagines how it would go down that someone tells them they have cancer, they are sitting in a doctor's office across the desk from someone in a white coat. I might have been staring at a 40% off sign in a department store. I'm also pretty sure my mom wanted to just go back to my house immediately, but I figured since we were out, we might as well stop at the grocery store and run a few errands since I had cancer and would be occupied for awhile with that. Even writing that, I realize how weird it sounds, but it was more of a practicality thing than anything else. We needed organic whole milk, cheddar bunnies, and apparently, a better thyroid.
And Issac.. I called him: no answer. I called again: no answer. And again. Plans had to be made and it is the world's strangest feeling to be talking with someone (anyone) else about your cancer before your spouse even knows that it exists. People who knew: my neighbors. Amelia's preschool teacher. My friend Jess. The checkout lady at JoAnn fabrics. He had no idea for the better part of the day. Rough day. Wow, I sure hope 2013 has something better to deliver on this October 16th day than last year :)
Late that night.. and pretty much the entire next day were the lowest points in this entire journey. I don't chide myself for my lack of strength or positive thinking. I'm the first to admit that I was a hot mess, and I couldn't find a positive thought anywhere in the entire mess of that day but I am happy to report that everything since then has been an upswing. My second surgery went well. My doctors rocked. The food didn't suck. I didn't sleep a wink but watched an entire season of New Girl in the hospital and even laughed a little bit. I came home, and started on the journey that many of you have been following since a few days after that when I shared the news.
So why write about it now? The other day, while reflecting on this approaching milestone-of-sorts, I realized that I never really talked about what happened that first day. I think I had always meant to. Somehow as time passes, I am more willing to share more of the emotion.. I surely remember these details like it happened five minutes ago, but sharing raw details can be harder to communicate than facts or cheeky photos of my goofy kids.
P.S. I haven't been back to Gordmans. I don't think it would be weird, but who knows. I never frequented it much to begin with, so it hasn't been an active avoidance. I do find it different to be at my sister's apartment sometimes. I spent so much time there alone while on quarantine that the last time I was there with my parents, the girls and my sister, it almost felt uncomfortable to have other people in that space I occupied alone for ten straight days!
Showing posts with label thyroid cancer. Show all posts
Showing posts with label thyroid cancer. Show all posts
Wednesday, October 16, 2013
Sunday, February 10, 2013
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 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."
Friday, November 30, 2012
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!!
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!
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!!
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| Low Iodine Dinner at the Van Handel Wedding! |
Thursday, November 15, 2012
House Arrest (and a favor to ask!)
As a part of my treatment, I will be undergoing radioiodine
ablation on November 28th. 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 19th (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 28th. 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.
Wednesday, November 7, 2012
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::
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| Photo 1: Intention of pinto bean sensory bin Photo 2: Ingrid's interpretation |
Tuesday, November 6, 2012
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 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
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