Good news

Ok I finally spoke to my endocrinologist today.

I got the report last week, but I was unsure of what exactly it meant. What I could get from it was that there was an area that lit up in the scan in my ‘superior left mediastinum” (upper left chest) that they couldn’t determine if it was clear because of the ends of the sternal wires (what they used to stitch me back up).

However after talking to her this morning, she explained that they expected to see that so soon after the surgery and the radioactive iodine. She didn’t say “cancer-free” or “remission” but she did say that this was positive and ‘very good news!’

In addition, the blood work came back. The T4 is still high and the tumor markers are still elevated, but it was only 34 when she said it can be in the thousands this soon after treatment.

The TSH (the measure of my thyroid hormone) is 1.1, which is normal for people with a thyroid; however mine should be lower. This means that she will have to increase my dose of the thyroid replacement hormone.

The other thing we discussed is that I’ve been experiencing strange mouth symptoms; including a metallic taste and the feeling that the inside of my mouth is covered in cuts. She thinks this is from the iodine and should clear up on it’s own, but it could also possibly be from the generic version of the thyroid replacement. I see her in the office next Wednesday, so if it doesn’t clear up by then, she is going to call in a higher dose of the brand name drug instead of the generic.

I also have to get a second set of labs for my autoimmune. I had my levels checked for that last week after the radioactive iodine because I was concerned that that would cause something else to go haywire. I didn’t think this through, but of course all of the inflammation markers were super high! My rheumatologist said that wasn’t a surprise after surgery and everything else that I’ve been through and so I will repeat labs in a month.

I’m definitely grateful and relieved, but I don’t feel out of the woods quite yet. I will get more blood work in 6 weeks and a neck ultrasound in 6 months. I will find out Wednesday during my appointment what the long term plan is and when/if I can be considered ‘in remission.’

With all of this health stress, the elimination of my job and still having a nasty cough, it almost seems like there is too much to hold. I am kind of bracing myself for an implosion. I have started updating my resume and linkedin, but I think I just need to step back and give myself some space. I had a trip planned to visit my friend in San Diego this weekend. It’s an easy direct flight, I had already requested the time off, and I’m excited to see my friend; so I’m just going to go. I think it will help me clear my head and get some perspective. Maybe also a little warmer weather!

Thanks for riding the rollercoaster with me. I can’t tell you how grateful I am for all of the support.