Bread of Life

I was blessed this weekend to have so much support from out of town. 
 
My brother flew in from New York, which is such a rare treat!  Thankfully, given some timing and the need to wait (as I will explain more later) for some further testing, I was able to abandon the low iodine diet for the weekend and we actually were able to eat real food.   Sadly, Michigan basketball didn't deliver fully.  Still, Rylie and I have really enjoyed Zach's company and conversation. 

My friend from Boston/Chicago (now back in Boston) was ordained this weekend (congrats Kristin) and returned to Chicago to be ordained.  She lived here last year and it was so nice to be able to talk with her again.  She had a beautiful and moving ordination ceremony on Saturday. Part of the ceremony was her giving communion for the first time.  It was such a genuine blessing to receive communion from her, particularly at this moment in life.  As she broke the bread, she spoke the words "this is the bread of life" and while I've heard them before, the power and meaning was precious to me in that moment.  I'm glad I had a handkerchief in my purse as the entire experience was very moving.  As an added bonus, Kristin's ordination brought other Boston friends from our small fellowship group who I haven't seen in far too long.  Their presence, as always, was grounding, amusing, and inspiring.    

A friend from grad school was also in town (for other reasons) and we were able to meet up too!

On the medical end, there is good news, bad news, and no news.  

The good news: I love my endocrinologist!   I met with him for the first time on Tuesday.  He is an MD/PhD and really got me.  He said he had some things for us to accomplish, but first what are my questions. I said I was an academic and could ask questions all day, but primarily I wanted to discuss whether I should do radiation given the current state of the literature with it being "recommended for select patients based on expert opinion, but with no data to say it reduces recurrence".  He looked at me, and said "what is it you do again?"...and we were off to the races.  He understood my questions and for each of them had a study or two to cite.  The newer studies seem to indicate that for people in what we think is my situation, more to follow on that, there is evidence that radiation does not reduce rates of recurrence, particularly if my Tg is less than 1 (see below).  My friend, also an academic/scientist, was with me seemed to enjoy the visit and appreciated the endocrinologist "nerding out" with us.  He has been very responsive to the secure email messaging and answering questions.  He took a lot of time with me and at the end said, now I'm running an hour behind...but in a totally upbeat manner.  I said I was sorry, I know I had a lot of questions, and he said "no, this is what I love".  So there are many more conversations to be had and decisions to be made...but not quite yet.     

The bad news:  my parathyroids, though supposedly all four were at least partially preserved, are not working...at all.  On last measurement they are doing zip, zero, zilch.  We would think that they would have recovered by now and they seem to not be doing that.  I have a blood test tomorrow again of calcium levels and parathyroid hormone levels to see if they have started back to work yet (as I do tomorrow).  This means I got all tingly again with low calcium.  It doesn't matter how much calcium you throw in your body, if your parathyroids can't help absorb it with the right type of vitamin D then it won't be absorbed or used.  Turns out the vitamin D we take, or even the prescription D I have been taking once a week since January is converted into another more active type which I am now taking twice a day...along with calcium three times a day.  So prayers for those very important parathyroids to wake up already are very welcome.  

The no news:  There is a blood test that is the best indicator of disease presence (or at least one of the best) called your thyroglobulin level (Tg).  It can tell you if there is very low disease (less than 2 and ideally less than 1) or if there is some or a very high risk.  Mine on Tuesday was just over 2...so in the right direction, but not where I yet want it.  This is best measured as an indicator while your TSH (thyroid stimulating hormone) is high and at least 4 weeks post surgery.  I am at 3 weeks post surgery (and was 2.5 weeks out on Tuesday).  Your normal TSH is 0.5 to 4 and the desired "elevated" level for this test is above 30.  On Tuesday, mine was 87.  Clearly we couldn't wait another week without some action, so I started levothyroxine (artificial T4 thyroid) on Friday.  We will get my TSH back up again (likely with some injections) and do the blood test and whole body scan the week of the 24th ish.  So then I/we will have more data upon which to base decisions about whether to do radioactive iodine or not.  So more, but necessary, waiting.  And this type of cancer is very slow growing, so we certainly have plenty of time in which to make these decisions.