Sunday, March 27, 2011

Ninja Cancer and Amos Lee

I've been having trouble figuring out how to write this post.  I knew I needed to post an update after my various doctors appointments were finished, but the more I discuss everything the more real it all gets.  Frankly, I was finding myself overwhelmed.  Then, I went to see Amos Lee tonight at the Vic Theater in Chicago, and everything changed. 

As I had mentioned earlier, I was preparing for my every-6-months endocrinology visit as well as a sleep study.  The sleep study went well, and it turns out I don't have sleep apnea, but I do kick my legs a lot when I sleep.  The technician said that I kicked over 100 times during the 2nd half of the night.  Once I even woke myself up.  I have absolutely no recollection of this during the sleep study, or any other night for that matter.  I'm guessing we will address this during my follow up appointment in April.  If I can coax a little more energy out of my sleep by not attempting to swim (what else could I be doing given my swimming history) during the night, then I'll take yet another medication.

The endocrinology visit yielded very little in the way of actual data, but the discussion was extremely helpful.  I did get my TSH checked again and I am at 0.35 which is technically perfect.  I don't feel any worse or better than normal, so I see no reason to change it.  Hopefully I can stay stable for awhile.  I discussed disease management at length with my endocrinologist.  Usually, I would go in for a neck ultrasound within the next few weeks, but we have decided against it for the time being.  Lymph nodes can swell for a number of reasons, and there is no specificity with the ultrasound.  Most times it worries us for no reason.  In the future, there might be a reason to do it again, but not right now.

The biggest thing that needs addressing right now is my Thyrogen stimulated thryoglobulin (Tg) level.  It should be undetectable since I don't have a thyroid, and it had been undetectable until recently.  The fact that it went up tells us that something is growing.  All of my scans are negative, so it is too small to see, but it is there.  Ninja cancer.

I'm going to have the Thyrogen stimulated Tg blood test again in May to see what's going on.  Most likely it will have gone up a little bit more.  Thyroid cancer grows slowly.  Our best educated guess is that I will have to have surgery and another radioactive iodine ablation in 3-6 years.  Until then, we wait for it to grow into a mass we can locate and get rid of.  Stupid ninja cancer.

As I tell more people about this, I get a little upset.  I will admit, I get caught up in the "this isn't fair, why me" of it all from time to time.  It's a lot of emotional energy that I don't need to be expending.  I am so very grateful that everyone I tell is supportive and willing to listen.  My sister assures me that whatever happens in the future, it will be better because she will be there.  I believe her.

I was happy to be going to my cousin's house this weekend for good times, good beer (inevitably) and good music.  Now that I am sitting here in this amazingly comfortable bed and have gotten to spend time with my cousin and her husband, including an un-freaking-believable Amos Lee concert, I'm downright thrilled.  This is a welcome distraction from all of the drama.  I was excited to get semi-dressed up, put on my DNA bracelet (yes, I am that nerdy) and go out in downtown Chicago.

Music has always been a powerful thing for me.  Spiritual and emotional energy in--"in a big bad way," as Kevin Smith would say.  This Amos Lee show is definitely one of the best concerts I have ever seen.  In addition to having the best voice ever, he interacted with the crowd, was funny and told great stories to go along with the songs.  He also talked about a program he participates in called Musicians On Call(Here is more on MOC in Amos's own words.)  Basically, they bring music to the bedsides of patients who can't leave the hospital.  Amazing.  His songs were fluid and resonant and powerful--and he had strep throat.  Sometime during Street Corner Preacher I felt something in me change.  Have a listen.  The performance from tonight is remarkably similar to the one in this video.  He even had on the same shirt.

I felt a little calmer.  A little better.  A little more whole.  Yes, music can do that.  It can change you fundamentally.  It can clarify things.  It can give you perspective.  It can give you strength.  I don't think it was the words to this particular song as much as the passion that had been so apparent the entire night overflowing at this one moment.  It continued for the rest of the set.  The lights were bright yellow during Windows Are Rolled Down and everything felt warm and wonderful.

Somehow things make a more sense to me now.  This is my life.  My lifeMY life.  Only I can choose how to live it.  It can be sad or beautiful, boring or wondrous, frantic or calm.  Whatever it is on any given day, I claim it as my own.  Tonight I choose amazement, wonder, acceptance and peace.

Until next time, Check Your Neck.

Saturday, March 19, 2011

Managing Energy and Living Primal

The thing I struggle with the most since my diagnosis is my low energy level.  I'm not sure there is a way to convey how it feels to wake up every day for five years and feel exhausted, the whole time knowing you have a life that needs living.  Someone else has already explained this far better than I can hope to, so please, read this story before you continue.  The Spoon Theory written by Christine Miserandino from

As a scientist, I wish I could lay out my spoons each morning, count them, and meticulously plan when I am going to use them throughout the day.  Ideally, I'd have the same number of spoons every day and I would know how to manage them.  No two days are exactly the same for me.  Sometimes the actions of the previous day weigh heavily on me the next day.  Sometimes I feel just fine.  Sometimes there are repercussions for a week.  The bottom line is, there are never enough spoons.

I have learned a lot recently about managing the energy I have.  Much of this knowledge has come to me from my therapist.  What I have found most helpful (surprise, surprise) is collecting data.  More specifically, taking stock of my energy levels on a daily basis.  Energy In/Energy Out.  Physical, mental, emotional and sprirtual.  If I'm consistent with my journaling, then it is easy for me to see where my energy has gone and, as a result, I don't get as frustrated when I am tired.

Even after I started tracking my energy levels, I still felt pretty tired.  I understood it better, but I didn't notice any overtly careless uses of my energy.  This left me with one option--increase my daily energy pool.  I needed more spoons!  There were ways to improve my "energy in" for each of the four groups I track.  I find spiritual connections in nature, so I have been spending more time outside admiring the world and its beauty.  I get a tremendous amount of emotional energy in from spending time with friends and family.  The fact that I live with my sister is amazingly helpful to me.  I was surprised to find through my data collection that I hadn't found a way to recharge mentally, even though all I do at work is expend mental energy.  I have started meditating and it has been surprisingly difficult, but wonderful.  

Finally, physical energy.  My exercise routine was fairly non-existent.  I walk occasionally when my friends take their dogs out, but other than that it is just standard everyday exertions.  I rarely feel that I have enough spoons left at the end of the day to ride my bike, go for a walk, or hop in the pool.  I was a competitive swimmer for almost 10 years and would love to get back to that.  I've tried a few times in the past five years, and I overdo it so badly that I can hardly get out of bed for a week.  It's hard to figure out where to put exercise when I often find myself trying to decide whether to use my last spoon of the day (or one of tomorrow's spoons) for doing laundry or eating dinner.  It seemed to me that I had two options for increasing my physical energy:  sleeping more/better and changing my diet.

I mentioned in my first post that I wanted to use this blog as a way to hold myself accountable as I start living primal.  If you're not familiar with that phrase, I get most of my information from two related sources: and  The simplest way to describe it is "eat like a caveman."  One of my friends told me about the websites.  I had shared a lot with her in the past about my disease, and since she suffers from a chronic illness as well, she knows a bit about where I'm coming from.  She went primal months and months before I did.  I kept getting emails from her about how much better she was feeling.  Her disease symptoms were reduced greatly.  She had more energy.  And when I saw her in December she looked happier and healthier than I had ever seen her--and I had worked with her for 4 and a half years.

I should have jumped on board right away, but I was hesitant.  How would I be able to manage this lifestyle with such limited energy?  It seemed worthwhile to me to invest some extra spoons (and money) in purchasing and preparing quality food.  I started living primal 2 weeks ago.  I think it is still too early to tell how it will affect me.  There is a phase called the "carb flu" that happens as the body goes through withdrawal from all of the sugar it is used to receiving from all of the processed foods that are part of the standard American diet.  Also, I've cheated a few times.  I have no willpower when the bad foods are sitting around the house.  Luckily, they're almost all gone.  Everything I have cooked so far has been delicious and I am beyond excited to continue eating this way.

I have a sleep study on Tuesday night to evaluate the quality of my sleep.  It will be interesting to go from the one doing the experiments to the one being experimented on.  If I do end up having a breathing issue, I welcome the cumbersome C-pap.  Anything to give me a little more energy.

T-minus 2 days until the endocrinology appointment.  I'm definitely getting nervous about it, which is nothing new.  What has changed from 6 months ago until now is that I have the tools to calm myself down.  I'll be meditating shortly :)

Until next time, Check Your Neck.

Wednesday, March 16, 2011

My ThyCa History

Welcome to my little island on the interwebs.  The purpose of this blog is threefold for me.  First, I want to chronicle what I have experienced living with thyroid cancer up until now, and what I will experience in the future as I continually work towards accepting my disease.  Second, I want to hold myself accountable as I embark on a new chapter in my life--living primal (more to come on this in future posts).  Finally, if there is anyone out there in the vast ether of the internet who is going through what I am going through, I want them to feel slightly less alone.  Try to bear with me on this first post.  It's going to be a long one.

Let me start by saying that I am a very lucky person.  I try hard to never forget that.  My thyroid cancer was found completely by accident--by my dermatologist, no less.  I went in to see him because I had a rash on my legs after I had returned from a trip to Europe.  I am very fair-skinned and he wanted to check me for skin cancer as well.  He did a cursory thyroid exam that was more thorough than any I remember having before the cancer was found.  He said to me, "Your thyroid is kind of easy to feel.  Have your primary care doctor check it out at your next physical."  That was December 6, 2005. 

I followed up with my primary care doctor at my scheduled physical.  He agreed with the dermatologist and scheduled me for an ultrasound.  Shortly thereafter I met Bob the Nodule.  He was approximately 1 inch in diameter and located on the left lobe of my thyroid.  I was continually reassured that the likelihood that Bob was cancerous was very low.  I had many factors in my favor.  I was female, and only 23 years old.  How could it be cancer?

Everything else happened very quickly.  On January 16th my endocrinologist performed a fine needle aspiration biopsy.  I would be lying if I said it was a pleasant experience.  He had trouble getting enough cells, and had to repeat it five times.  I should have taken someone with me to that appointment.

I got a phone call the next day while I was at work.  It was my endocrinologist calling to inform me that the results were in, and it appeared to be cancer.  He said a lot more than that, but I honestly can't remember what it was.  I tried to write down a phone number so that I could schedule an immediate consult with a surgeon.  I failed.  My endocrinologist could tell that I wasn't functioning and offered to set up my appointment for me.  I gladly accepted and hung up the phone.  He called back in a few minutes to tell me the time and location of the surgery consult.  I know I called my parents that day.  I remember calling my sister too.  I don't remember much else. 

The next day I saw my surgeon for the first time.  He explained to me that the surgery was very straightforward and we needed to schedule it ASAP.  I hesitated a little, and he questioned that.  I just wanted to make sure my family could be there on the date we had chosen.  I felt a little better after he had explained things to me.  The fixed schedule of appointments that had been laid out before me appealed to my scientific nature.  We had a plan.  I liked that.  He said that they would only take the half of my thyroid with the tumor.  While I was in the operating room they would stain a cross section of the lobe with the tumor to determine, finally, if it was cancer.  If not, they would leave the other half of my thyroid so that I would have some natural thyroid function left.  If it was cancer, then they would take the whole thing out and I would go on replacement hormone for the rest of my life (Synthroid).

On January 24, 2006 I went in for my thyroidectomy.  The day started before 5am--I was the first surgery of the day.  Once I was settled in I said goodbye to my mom and the nurse came to wheel me in to surgery.  She made small talk on the way to the OR.  "Where do you work?" she asked.  "I'm in the cancer biology graduate program at the university," I replied.  "Oh, that's ironic," she said.  Nice, right?  The only other thing I remember is having trouble breathing right before they put the mask on me.  Then, nothing.

I woke up in recovery.  It was too bright so I asked for something to cover my eyes.  I remember having to go to the bathroom very badly, which I announced to everyone in recovery.  I also related that story to my mom as we went by the waiting room to get her.  Everyone there heard me too.  I had no idea there were other people around since my eyes were covered.  Something funny had to happen along the way, I suppose!

After awhile, a doctor came in to tell me that the Bob the Nodule was, in fact, cancer.  The surgeon had found three positive lymph nodes as well.  When I asked how he knew which lymph nodes to take out, he informed me that they had turned black.  The next steps had already been explained to me.  I would be put on replacement hormone for a short time while I was recovering.  Then I would go off my meds to prepare for my radioactive iodine (I-131) ablation.  The goal of going off meds is to raise my thyroid stimulating hormone (TSH) extremely high so that any remaining thyroid tissue/cancer will more readily absorb the iodine.  Once the tissue has absorbed the I-131, my body's immune system will destroy the cells.  Then, the cancer would be gone, and I could go on with my life.  I can say now, that it isn't quite that simple.

I  had to stay overnight in the hospital so my parathyroid function and calcium level could be monitored.  The parathyroid glands are very small and basically buried in the thyroid, so it is not uncommon for them to be accidentally removed during surgery.  I was by myself, and it was the loneliest night of my life.  I couldn't wait for my mom to come back in the morning.  The waiting was so difficult.  My surgeon had done a fantastic job and my parathyroid function and calcium levels were stable the following day.  They released me to go home, and I had no idea how draining that process would be.  I could hardly hold my head up.  My roommate had to brace my head from the backseat to keep me from crying.  Every move I made was excruciating.  I remember sitting at the pharmacy while my mom picked up my pain medication and thinking that I should be embarrassed because of the iodine all over my neck and chin.  I didn't even consider the fact that I had a giant, red slice across my neck as well.  I was too tired to be embarrassed anyway.

I didn't allow myself to recover as long as I should have.  I felt an obligation to get back to work.  I suppose I was a little bored as well.  The longer I was off my meds, the worse I felt.  By the time I went in to have my TSH checked one week before the ablation it was at 146.  A healthy person should have a TSH between 1 and 5.  The higher you go, the more hypothyroid you are, meaning your thyroid is underactive, or in my case, gone.  I had my 2mCi tracer dose of I-131 on March 14, and a whole body scan the following day.  The scan showed minimal uptake in the thyroid bed, meaning the surgeon had done a great job removing my thyroid.  There were no additional positive nodes on the scan, or any other metastases.  We could proceed with the ablation to get rid of any thyroid tissue or thyroid cancer left anywhere in my body.

I took my 96mCi pill of I-131 on March 16, 2006.  That's five years ago to the day.  I was isolated for about a week at home.  I didn't interact with my roommates or my cats.  I ate off of disposable dishes, used plastic silverware, drank through straws and had a separate bathroom.  I played a lot of World of Warcraft.  I started feeling worse and worse.  I had been started on Synthroid immediately after the ablation, but it takes 6-8 weeks for the levels to stabilize in your body.  I felt terrible.  This phase is known as "hypo hell" for a reason.  I was cold all the time.  I was sleeping for about 20 hours a day.  My hair was falling out.  I was pretty much non-functional.   I slowly regained some energy as the replacement hormone started to stabilize in my body.  I lost my sense of taste for awhile after the I-131.  Luckily, it came back.  By May 26, 2006 my TSH was down to 20.  Still a long way to go, but we had to make adjustments in dose in small increments since the relationship between Synthroid dose and TSH is not linear.

I had started working on a regular basis again.  The most frustrating part about being hypo was realizing that my brain was not functioning how I wanted it to.  I couldn't trust my brain to tell my hands to do the right things, and my science was suffering.  I knew if I waited long enough for my TSH to get down to where it should be, then I would be able to do my job well again.  It was a long wait.  In July my TSH was 13.  In September it was 1.73.  I was starting to feel human again. 

As a cancer patient, we were shooting for a TSH of under 0.3.  If the TSH gets too high, it signals the pituitary gland to tell the thryoid to grow and make more thyroid hormone.  If that pathway is activated in a ThyCa patient, the only thyroid tissue that could be left is cancerous.  The last thing we want is for the cancer to grow, if there is any.  So my goal for the next 3-5 years was to keep my TSH low.  To keep myself hyperthyroid.  To prevent that signaling pathway from being activated by taking a high dose of Synthroid.  Being hyper comes along with its own fun set of side effects.  I had heart palpitations, muscle pain, fatigue, trouble falling asleep, and trouble regulating my body temperature.

For the past five years I've been in a state of semi-controlled chaos.  I see my endocrinologist every 6 months.  We adjust my dose of Synthroid often.  My body seems to use it differently in different seasons.  I started having neck ultrasounds every six months about a year and a half ago to monitor my remaining lymph nodes for changes in size or appearance.

When I hit the four year mark my endocrinologist and I discussed how I was feeling.  Basically, I had been exhausted for four years.  We decided that we would back off my dose of Synthroid a bit and try to let my TSH come up to approximately 1.5.  That is where I had been before diagnosis.  It is a reasonable number for someone four years out.  We dropped my dose down and my TSH went up to 3.5.  Way too high.  We have been working on bringing it down ever since.  Last time we checked I was at 2.14.  I have had a combination of hypo and hyper symptoms for about a year now.

On September 21, 2010, I had my most recent ultrasound.  My doctor called while I was vacationing in northern Wisconsin to tell me that my lymph nodes had grown since the last ultrasound.  He was worried about this result and wanted to look into it further.  I went in for a PET/CT on September 30th.  My mom went with me to the appointment.  It was a long appointment, but the results were almost immediate.  The scan was negative.

We continued with two more tests.  First, I had a course of Thyrogen to artificially raise my TSH so that any remaining thyroid tissue/cancer would be more able to absorb iodine.  Then, a 2mCi tracer dose of I-131 and whole body scan.  Then, blood work to check my thyroglobulin levels.  The scan was negative.  However, my thyroglobulin levels are slightly elevated.  This means that something is growing somewhere, we just can't see it yet.  So, we wait.

Am I upset?  Yes.  Am I devastated?  No.  All I can do is get through it.  One day at a time.  I can be as proactive as possible.  I can make my life with ThyCa what I want it to be.  I've been seeing a therapist since September, and she has helped me in more ways than I can possibly explain.  I'm finally starting to feel like me again and not just a cancer patient.  I hope I can hold onto that throughout whatever happens in the future.

I go in for a visit with the endocrinologist on Monday.  I'm having my TSH drawn in a few days.  After the office visit we will set up another Thyrogen stimulated thyroglobulin blood test, as well as another neck ultrasound.  Once the results are in, we decide if more scans are necessary.  I'll update soon.

Until next time, Check Your Neck.