Silence Is Golden ... Mostly

The past few weeks, things have been all quiet on the blog front for an extremely wonderful reason - I've been busy living.

Until this year, I'd never realized how much in life I took for granted.  I guess wrist surgery with months of physical therapy plus a cancer diagnosis with ongoing treatment all in one year really packs a pretty powerful punch of perspective.  To have your body function the way it is supposed to, to be able to get up in the morning and say "Today, I want to go here" or "I feel like doing this" and be able to just do it is something that is normally so insignificant and yet in reality so incredibly amazing.  I don't think I'd ever realized this before.  Although "you don't know what you got til it's gone," I'm lucky enough to have gotten it back, and I appreciate it all the more.

What I'm trying to say is that the reason for my absence on the blog is that my presence has been elsewhere.  I didn't realize how terrible I had been feeling until I started feeling better, and as soon as I did, I dove headfirst back into life.  The first weekend after having recovered from surgery and the stomach bug, we were out of the house for a day of shopping and errands by 9:30 in the morning.  On top of that, I decided to start completely rearranging my craft room that weekend.  And come Monday, I still felt like I'd had a restful weekend.  After weeks of deciding whether it was worth the energy to shower before lying on the couch to read, this was such a huge deal.  Since then, there's been a lot of shopping, cleaning, rearranging and reorganizing, visiting family, spending time with friends, going to dog class, playing games, going on walks, working on craft projects, and decorating the house, and I'm still finding time to relax and rest in all of that.

On top of the normal list of craft projects I want to do, it's almost Christmas, which means I keep adding Christmas-related projects to my list.  There hasn't been a ton of progress on the cancer quilt, but that's okay because it's still serving its purpose.  I'll work on it when I feel like it, and will probably get a lot accomplished while I'm in radioactive isolation.  There will be a quilt update soon, but in the meantime, here's what's been keeping my crafty side busy:

Curtains for my door at work:

Curtains for home (sidelights and bathroom):

 Stockings for the mantle:

Some snowflakes, yet to be hung:

And some mistletoe:

Things are not completely golden though.  My scar is healing, I'm working full time again, and I've felt so much like myself again that at times, I've forgotten that there's even anything still wrong.  There isn't a day that goes by where I don't think about cancer, but lately it's been feeling like something that happened a long time ago.  So getting a call from the endocrinologist this past Friday and learning that my TSH levels are crazy bad was a bit of a shock.  Normal TSH levels are supposed to be around 0.35 - 4.00 uIU/mL.  For a cancer patient, the target is the low end, maybe even lower.  My TSH is at 39.  Apparently, at this level, the nurse would have guessed that I wasn't taking my medication and I was exhausted all the time (neither is true).

This is all frustrating and complicated for a variety of reasons.  My TSH level is high enough that we could go ahead with RAI treatment right now, with no need for Thyrogen or going hypo.  We can't do that though, because I haven't gone on the low-iodine diet yet (you know, since we'd decided it was easier to wait until January and then I could actually enjoy my holidays).  Even if I had started the diet on Saturday after finding this out, you have to be on it for an absolute minimum of 1 week before treatment.  After accounting for weekends, that would put us right at Christmas, which means the earliest that treatment could have been scheduled would probably be around the 27th.  The problem with that option is that it would mean leaving my TSH high for 2 more weeks, and that is no good.  Since TSH stimulates the thyroid, having a very high level is telling any remaining thyroid cells in my body to go into overdrive and is encouraging them to grow.  Since there's still the possibility that there are cancerous cells remaining, you can see why this is a bad idea. 

So in summary, I have to up my synthroid dose to try to bring my TSH level down for a couple weeks so that I can bring it back up again next month for treatment.  While this is not an overly big deal, it's just an unwelcome reminder that I'm not okay yet.

The Next Step

I had my first appointment with my endocrinologist last week, and I like him so far.  The main reason for this appointment was to sketch out a plan for what comes next.  Although some people have to option to just monitor things going forward, since my tumor was so big (4 cm), the next step is to do radioactive iodine (RAI) treatment.

A quick lesson in thyroid function:
The thyroid uses iodine to make T3 and T4, hormones critical in the regulation of metabolism.  When levels of T3 and T4 are low, the pituitary gland secretes thyroid stimulating hormone (TSH), which, as the name suggests, tells the thyroid to get working.

How RAI treatment works:
If you provide the thyroid with a radioactive form of iodine (¹³¹I), the cells will concentrate the radioactivity and die.  If you have a healthy thyroid, this would be very bad.  If you have thyroid cancer, you can use this to eliminate any remaining thyroid cells that may or may not be cancerous.  The neat thing about this is that the thyroid is the only part in the body that uses iodine, so there are minimal side effects from this treatment.  In order to maximize the uptake of the radiation, you want to do two things:  starve the thyroid of iodine and make sure that the levels of TSH are high.  So you go on a low iodine diet and either get injections of synthetic TSH (Thyrogen) or go off of your thyroid medication to naturally elevate your TSH levels.

Because of two main factors, scheduling has been a bit of an issue.  The first complication is that my insurance will be changing on January 1.  My endo likes to send his patients to a certain health system for the treatment, but next year they will be out of network for me.  The reason that he sends people there is because the way they do the procedure, they have an easier time of getting Thyrogen, which brings us to the second complication - Thyrogen has been in short supply for a couple years.  I initially didn't want to do the treatment until January so that I could enjoy my holidays, but since I don't want to have to go off of my meds (go hypothyroid) and deal with possibly being exhausted and feeling crummy for a few weeks, we decided to try to schedule before the end of the year.  Unfortunately, as part of the low iodine diet, I found out that you can't eat fish for 4 weeks before treatment.  We eat fish at least once a week, so that put us at the week of Christmas as the earliest option.  So the plan is to wait until January and hope that I can get Thyrogen then.  If not, I'll have to go hypo and hope for the best.

Giving Thanks

This year more so than ever, I am acutely aware that I have so much to be thankful for.

I am thankful that I found the cancer so early and that it is so treatable.  I am thankful for the wonderful medical team treating me and for an excellent surgeon who kept the incision as small as possible so that I wouldn't have a huge scar on my neck.  I am thankful for good insurance, which has allowed me to not have to worry about money while worrying about my health.

I am thankful that I am finally feeling like myself again.  I am thankful for having energy to do the projects and activities that I want to do.  I am thankful for my relative good health - thankful that everything else still seems to be working as it should.  I am thankful that even after months of not really exercising, my run this morning felt pretty good.

I am thankful for my incredible husband.  I am thankful that he rarely gets sick and that he takes excellent care of me when I do.  I am thankful that he always knows how to make me smile, but will let me be sad when I need to be.  I am thankful for our dog, for our home, and for the wonderful life that we share.

I am thankful for my amazing support network.  I am thankful for my family, both near and far.  I am thankful that my mom was able to be with us for both of my surgeries.  I am thankful for all of my friends, both new and old.  I am thankful for the local ThyCa support group that I found.  I am thankful for all of the messages, cards, and care packages that I have received.  I am thankful for all of the thoughts, prayers, and love sent my way that are helping me stay strong throughout this ordeal.


Happy Thanksgiving, everyone!

A Rather Long Update

The blog title is now official.  Surgery #2 went well.

We checked into the hospital right around 11 last Monday morning and got paperwork taken care of pretty quickly.  I changed into my stylish hospital garments and found out that the doctor actually wanted to move my surgery time up by about 30 minutes - no complaints from me there!  Since everything went so well last time, they gave me all of the same drugs for anesthesia and for nausea, which worked just as well the second time through.  I was told that this surgery itself went faster than the first (I wouldn't know), but that I spent longer in the recovery room.

Last time when I woke up in the recovery room, I remember being very mentally alert but not able to really talk or move for a while.  My doctor came by to talk to me, but all I could really do was mumble, so he had to come back later when I was more awake.  This time, I was much more with it when I woke up, but my throat was hugely sore and I had almost no voice at all - I guess whoever did my intubation this time wasn't as gentle.  I also remember having an argument with myself over whether anesthesia having worn off meant I was supposed to stay awake or not - the sleepy part of me won.

The dinner situation was decidedly better the second time around.  Last time, by the time I got to my room and wanted to eat anything, the cafeteria was closed and all they could bring me that was gluten-free was jello, applesauce, and rice chex, which, while delicious, do not a dinner make.  This time, I asked a nurse if a dinner could be held for me, explaining what had happened before.  She said she would take care of it.  There was a full dinner waiting for me when I got to the room, and it had apparently come up with strict instructions to make sure it was saved for me.

The night was mostly uneventful.  Various nurses came and went throughout the night to check my vitals, take blood to check my calcium levels, see if I needed pain medicine or to go to the bathroom, etc.  I managed to go through the night with only a couple doses of pain meds.  (I took the meds religiously after the first surgery, and I think they contributed to the migraine I had a few days post-op, so this time around I tried to stay off of them as much as possible.)  Knowing the routine was a big help, and I definitely slept better the second time through.  (My incredibly wonderful husband stayed with me both times, though I don't think sleeping in one of the hospital recliners was any better the second time than the first.)

Breakfast, oddly enough, didn't go as smoothly this time.  I had thought that after getting dinner worked out, breakfast wouldn't be an issue.  Somehow, even though it was clearly marked on my dinner that I needed gluten-free, breakfast showed up decidedly not.  We double-checked, because last time when french toast showed up, I just assumed it was a mistake only to find out that it was delightfully gluten-free.  This time, however, was a mistake, but one of my nurses called in and got some of the good french toast sent up for me.

Both times through, all of the nurses I had were incredible.  They were all kind, friendly, and helpful, and to me, their presence and demeanor always felt calm and reassuring - all very much needed and appreciated in a stressful situation.  So a great big THANK YOU to all nurses:  this whole experience has given me a huge appreciation for what you do, and I am so incredibly grateful that there are people like you who can handle it as well as you do.

After we checked out Tuesday, we stopped by our polling place to vote on the way home.  I kept my hospital bracelets on just in case I needed to flash them to get to the front of a line.  There was no one else there, so we were done very quickly with no bracelet-flashing needed (though the woman who signed me in did see them and told me to feel better soon).

Overall, minus the more sore throat, I felt better after surgery #2 than I did after #1.  Maybe it was because after the first surgery, my poor half thyroid couldn't really keep up and I was low on thyroid hormone, whereas this time I started taking synthroid Tuesday morning.  Or maybe it was because this time I only took half doses of vicodin and switched off of it pretty quickly and that stuff really messes with me more than I think.  Whatever the reason, I was feeling pretty good about everything.

And then on Thursday night, I got leveled with a stomach bug.  A really nasty stomach bug.  A 'sleep on the bathroom floor because you're not going anywhere else' kind of stomach bug.  About 12 hours after it all started, I was finally able to keep some water down again.  And it wasn't until the next day that I was eating food with any amount of confidence.  One big problem with not being able to keep anything down is that 'anything' includes medicine, and that includes thyroid medicine.  So combine the stomach bug with missing my medication on Friday, and the result is that my speedy recovery turned into me only starting to feel normal again today (which is part of why this update is so late).

But the surgeries are over.  My thyroid is completely gone - and the good news is that the pathology on the left side came back clean.  Next week is my first appointment with an endocrinologist, and that's when we'll find out what happens next.

Cancer Quilt - Part 2

Even after deciding on the color scheme, picking the fabrics for a quilt usually takes me quite some time.  I start by wandering around all the fabrics to get an idea of what's available.  Then I'll start pulling out all of the bolts in my color scheme that catch my eye - I always pull out more fabrics than I'll ultimately need so that I can play around with the combinations.  Once I've got all the bolts in a pile, it's time for a tried and true technique:  I take a step back, tilt my head to the side, and squint.  I'll rearrange the order of the bolts, switching different fabrics in and out until I'm satisfied with what I've got (with lots of stepping back and squinting throughout).

This time things went a lot more quickly than I had expected.  Teal, pink, and blue is not a color combination I would have come up with on my own, so I thought I might struggle trying to find a cohesive group of fabrics.  Instead, all of the right fabrics seemed to just jump off of the shelves, and after a few rounds of shuffling bolts, I was done.

A closer view of the pinks ...

... and the teals/blues

The frustrating thing this past week was that even though I had a free day off of work (due to the power outage), I couldn't work on the quilt (due to the power outage - everything needed to be ironed!).  But due to the storm, Trick-or-Treating got postponed until Saturday evening, and I discovered that waiting for kids to show up at the door was a great time to be working on the quilt.  After that work session plus a little bit more this morning, all of my squares are cut and are ready to be sewn into 9 patches.

Oh Sandy

Things that went according to plan this week:

My parents got here on Sunday to spend the week with us while I recovered from surgery #2.

We went to work Monday morning.

Things that did NOT go according to plan this week:

We came home from work early on Monday due to increasingly bad weather.

My surgery was cancelled.

We lost power Monday night.

We didn't get power back until this morning.

For the most part, Sandy left us relatively untouched. Obviously, there was the whole power outage thing, but we didn't flood, we didn't see any sign of wind damage to our house, and we are all safe and sound (even if we were a little chilly).  We're learning that we're lucky to have our power back at this point - a lot of people still don't (my sister included), and the power company is saying it might be Monday before everyone has power again.  We're also lucky to have a very generous neighbor who let us (practically insisted on it) siphon power from his whole-house generator by running extension cords from his house through our window.  He wanted us to plug everything in (TV, internet, fireplace, fridge, phones, etc.), promising that the generator could handle it all.  We were a little wary of putting too much on the extension cords, so we just plugged in our fridge and charged a couple phones, but that alone was a HUGE help.

We actually ended up having a blast both Monday and Tuesday nights. My best friend and her fiancé were over for dinner on Monday night. We made it through dinner and dessert and were partway through a game of Settlers of Catan when we lost power, so we finished the game by candlelight. Having also lost power, they came back over on Tuesday night and we did everything by candlelight that time: cooked dinner, cleaned up, and played more Catan.

The biggest stress was surgery being cancelled - I don't like when my plans get changed on me.  Completely understanding why it would be cancelled (the hospital was running on back-up generators) doesn't make it not stressful.  Fortunately, I was able to get in touch with the doctor's office this morning, and am rescheduled for surgery on Monday.  So for now, I am still thyroid partly included.

Thank You

So much can be said about finding blessings in tough times, about friends in need - so very true.

Thank you to everyone for all of the love, thoughts, prayers, messages, kind words, etc.  All of your support and encouragement is absolutely invaluable to me.  I love hearing from everyone, whether we talk every day or haven't been in touch lately.  And whether it is through phone calls and texts, emails and Facebook, or even through this blog, hearing from you helps me stay positive.

Please keep it coming :)

Thyroid Cancer Awareness

If you would like to learn more about thyroid cancer:
     http://www.cancer.gov/cancertopics/wyntk/thyroid
     http://www.thyca.org/
     http://www.checkyourneck.com/

If you would like something to sport to show your support and promote awareness:
     http://www.choosehope.com/category/thyroid-cancer-teal-pink-blue

Cancer Quilt - Part 1

When I first started quilting two years ago, I absolutely fell in love with the art - both the physical making of the quilt and the concept of taking small, separate pieces and putting them together into a beautiful whole.  Seeing the whole thing evolve from choosing the pattern and the fabrics all the way through to a finished quilt is incredibly rewarding, and so far (knock on wood), each quilt has looked better at the end than I imagined it would.

Making a quilt now makes perfect sense to me, not only because it's something that I love to do, but also because it's something over which I am in complete control.  I get to decide everything: the size, the pattern, the colors, the fabrics, the block size, the arrangement, the borders, the backing, the stitching, the thread color, the binding - every decision is mine and is not dependent on what the doctor says or when I can get an appointment.  If I feel like spending three hours working on it in the evening, that's fine.  If I'm too tired and don't feel like even looking at it, that's fine too.  It feels strangely like I can take my cancer and put it into the quilt ... cut it into small pieces and arrange it the way I want and make it into something better.

Since I am still relatively new to the world of quilting (this will be my 4th quilt) and I haven't done anything particularly advanced yet, I knew I wanted whatever pattern I chose to be fairly simple.  It needed to be something that I wouldn't have to think about too hard while making, something that wouldn't add any stress in trying to perfect a difficult block.  After a little bit of looking, I settled on a Disappearing 9 Patch, which is very easy but can look completely different depending on fabric choice and placement.  Picking the colors was easy:  the awareness colors for thyroid cancer are teal, pink, and blue, so the quilt will be in those colors.

Next time - choosing the fabrics!

May The Odds Be Ever In Your Favor

I've never been a big fan of probability and statistics in general, but even less so when they are mixed with such serious matters as my own health.

It's hard to retrospectively talk about how the odds looked good each step of the way.  Something like 90-95% of all thyroid growths are benign.  Even once it was determined to be a solid nodule, the likelihood that it was benign was still around 80%.

But this was part of how I knew I liked my surgeon the first time I met him.  He said:  It's great if you're in the 80% that's benign, but if you're in the 20%, you don't care at all about the 80% because for you, it was cancer 100% of the time.

Exactly.

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During the first surgery, they removed the right lobe and the isthmus of my thyroid.  There were two nodules: one was the giant one that I had found, measuring in at 4 cm, and one was much smaller, at 0.7 cm.  Pathology results showed that both nodules were cancerous, but there was no sign that the cancer had spread.

I have papillary thyroid cancer, which is the most common and least aggressive of the thyroid cancers.  Specifically, mine is a follicular variant, but that isn't important since all variants of papillary cancer are treated the same way and have the same good prognosis:  totally treatable and curable.  After getting the rest of my thyroid taken out, I'll have to go through radioactive iodine treatment to kill any thyroid cells that are left behind, and then I'll be on replacement thyroid hormones for life.

-------

I was looking at a chart earlier today about the odds of getting different types of cancer and the risk of dying from that particular cancer.  I've read a lot about how sometimes thyroid cancer is called the "good kind of cancer" because it is so treatable.  Obviously, this is a poor choice of words, since there is no such thing as a good cancer.  But at the same time, I do feel at least a little lucky, because it could be so much worse.

The Day Everything Changed

It was Monday, August 20th, and I had just gotten back to my office after lunch.  I was playing with my necklace while I read some emails, and I felt a lump on the right side of my neck just above my collar bone.  After going to the bathroom to check if there was actually something there (yes, it was visible), I did what anyone in my generation would do - I googled it.  And then I got on the phone and scheduled a doctor's appointment for later that afternoon.

At the doctor's office, they took blood to check my thyroid function and had me schedule an appointment for an ultrasound.  The blood work came back normal, which meant that my thyroid was functioning as it should and I didn't have one of the thyroid-related autoimmune diseases.  But when we got the ultrasound results, it showed that the lump was a solid nodule, which probably meant nothing but might be something and so I needed to get a thyroid biopsy to check.

The biopsy itself was quick and painless, although we ended up having to wait about an hour and a half for a 5 minute procedure.  (The technician who assisted on the procedure was so nice about it though - she felt so bad that we had to wait so long because they had gotten backed up that she got us lunch passes to the cafeteria.)  Unfortunately, my results came back as suspicious for follicular cancer, which meant that I had to have surgery to remove the nodule even though it might be benign (~80% of the time, they are) because they couldn't tell for sure.

We met with a surgical oncologist on September 19th (just under a month after finding the nodule), I had surgery on October 2nd, and on October 15th, I learned that I did indeed have cancer - papillary carcinoma, follicular variant.

It may be strange that the only date that is so concretely stuck in my head is August 20th.   That's not when I learned that I would need surgery, or when I found out for sure that it was cancer.  But that's the day that I found the lump on my neck - the day when everything really did change.

The Reason

Let me start off by answering some questions.

Why am I writing a blog?  

Because a cancer diagnosis at age 26 was one of the last things I ever would have guessed would happen.  Cancer is not something you can control, and that does not jive well with my personality - I like to have things organized, I like to plan, and I like to know what's coming next.  So in an effort to regain some control, I decided two things.  The first hit me very quickly: I'm going to make myself a cancer quilt.  I love to craft and I find it very cathartic, so I can channel my energy into making something that will later serve as a testament to what I've been through.  The second thing was more of a logical progression: I've found that so far, the most exhausting thing has been telling people what's going on.  I want all my friends and family to know what's happening, but I don't want to have to keep rehashing all the details.  Which meant it made perfect sense to keep a blog.  I'm hoping that this will also be a good way to channel my energy, especially in the times when I have less of it and sitting is all I can manage.  And I realized that as an added bonus, I can show the progression of the quilt here too.

What's with the blog title?

I'm holding onto the old adage that laughter is the best medicine.  As I was searching online for some swag (because every situation calls for some good accessories!), I came across this:

It just made me laugh, so I'm just holding onto it for now and I'll get it for myself when I'm done treatment.  It's only half true right now, but after October 30th, I'll be completely sans thyroid.

What about the tagline?

Initially, I wanted the blog address to be thyroidnotincluded, but that was already taken.  I ultimately decided that this was a good thing, because maybe something less cancer-focused would be good.  I settled on something that comes from one of my favorite quotes of all time (a line from Lord of Chaos by Robert Jordan), and I just modified it slightly for the tagline.  

The Result
And so this blog was born.  Maybe it will be helpful for someone else, but if not, that's okay.  Even though my initial intent was to write this for other people, I realized that it's mainly for me - to help me organize my thoughts, to chronicle what I'm going through, and to help me remember that "We are always more afraid than we wish to be, but we can always be braver than we expect."