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.


  1. This one made me cry!! So glad you had a wonderous time!!!! Love you!!

  2. My Dearest Most Special Friend,

    I know how much this sucks--and it sucks in a big way--but we'll fight it and we'll beat it! I love you and I'm here for you every step of the way! Hang in there! (And keep listening to awesome music!) BIG HUGS! xoxoxo

  3. Thanks Sage and Tami :) Love you both!