Friday, June 29, 2012

Radioactive Iodine: Preparations

I'm a bad, bad blogger.  I promised all kinds of updates, and what do I do?  Nada.  I'm sorry about that.  On to the bloggage.

So, since my last long overdue post, I've quit my job, had our baby, finished up the Cubbies year, and had my radioactive iodine (RAI or I-131) treatment for thyroid cancer.  (Caution: that link goes to a Wikipedia page, complete with a lovely picture of a cancerous tumor-studded thyroid.  Oh ye weak of stomach, thou art warned.  Oh, and if you're preparing to go through the thyroidectomy surgery, do NOT look at/for images beforehand.  Really.  Trust me on this.)

The treatment took place on Monday, June 25th.  (This will be a lot of dates and dosages, mainly for me to remember [Ha!] what happened, and for the benefit of anyone else going through the same thing.)



I went off of my Synthroid (thyroid replacement medication) on May 28th.  I had been on 150mcg, still working my way down from the pregnancy dose of 275mcg.  I started a low iodine diet (LID - more informational post to follow) on Monday, June 11, and did the very last breastfeeding for Madeline (oh yeah, I had a girl, named her Madeline Joy :D ) on Wednesday, June 13th.  My husband Aaron and I had an appointment with the hospital physicist, who oversees the radiation safety, and the nuke med nurses, Jan and Trent, on Monday, June 18th.  They were wonderful about answering all of our questions, reassuring us about any trepidation, and just plain letting us know everything that was going to happen and what to expect.

After that, I received a short call from the nuclear radiologist who would be setting my dosage, and he had me go in for lab work to see what my TSH (thyroid stimulating hormone, that is now provided by Synthoid due my thyroid being MIA) level was.  During the call, he told me that my TSH level would not be near the level he required for this treatment (60), as I was far too "perky".  He said that if I was high enough, I wouldn't have answered the phone and wouldn't have the energy to crawl out of bed.  I tried to tell him that I have fibromyalgia and years of experience with fatigue, not to mention a five-month-old to care for, but he kept talking over me and said I had too much "pep" (he has now been dubbed Dr. Pepper, privately).  He apparently called my primary care physician (PCP) to order the lab work.  Now, I haven't seen my PCP or anyone in her office since... September, maybe?  So, while I thought that my endo was sending reports to them, I personally haven't given them any updates on where we were in regards to my health or the cancer treatment.  Anyway, I went in to the office and left my donation of blood.  The next day, I received a call from my endo's office.  My TSH level, which I was told would be nowhere near 60?  Over 100.  The lab tested it twice to be sure.  And they don't measure, or at least report exactly, anything over 100.  (Too much pep, eh?  Vindication!)  They thought I had gone off of the med (yes, I had called them) for the treatment, but wanted to double check.  By the way, the recommended level is 0.3 to 3.0, so...  yeah.  A wee bit high.

So, hang up with the endo, a little while later I got a call from Jan, the nuke med nurse from the hospital.  She told me my level, again, and said we can go ahead and schedule my RAI for the next week.  She needed to make some calls, and would call me back.  Hang up with her, and then I received a call from a very concerned-sounding nurse at my PCP's office.  "We got the results of your lab draw back, and your TSH level is waaay elevated, I mean off the charts.  So, we made an appointment for you to see an endocrinologist tomorrow, because this is not good.  At all."  Since when do specialists do new patient appointments the next day?!?  O_O  I had to explain that I was under treatment by an endocrinologist who was aware that I had stopped my med for a cancer treatment, blah, blah, blah.  Yeah, I need to call my endo's office and have them update my PCP on everything and keep them in the loop.  Oops.

Anyway, my level was high enough for the treatment ( :insert more gratuitous laughter at being too "peppy": ), so after some back and forth, we set it up for Monday, June 25 at 6:30 in the morning.  Blech.  Sooo not a morning person.  But, whaddya gonna do.


One (four, actually, but they can condense into one basic conversation) more phone call from the nurse on Sunday.  She had gotten the room all shrink-wrapped for me and then remembered - the pregnancy test!  Radiation during pregnancy = mega not good.  So we had to make a quick run to the hospital for a blood draw to make sure I wasn't pregnant.  (TMI warning: My last visit from Aunt Flow had been a week before, and we had abstained since then, as my dear husband didn't want anything to deter me getting a treatment that will get rid of this cancer.  So we knew I wasn't pregnant, but the hospital still needed the test, to be 200% sure.  I don't normally give out this much info, but with the very little I've had to go on in regards to others' experiences, I want to put as much out there as is reasonable, for any other people who have to go through this and are looking for any and all information to soak up.)  Then one last evening at home with my husband and daughter.  One last night to sleep next to my love.

The next morning we were off to the hospital...

2 comments:

Momma H said...

You are such a breath of fresh air - even talking about stinking CA treatment! Praying for good reports - especially after Monday's scan! Please keep us informed.
You are loved, dear Marla!!

The Ekeland's said...

Hey sister, at the top of your blog it said it began on Monday June 28th, it was really the 25th.

5 days down!!!