Sunday, May 18, 2014

Thyroid Cancer and Upcoming RAI

Where to begin?  My wonderful and turns out, life saving Primary Care Physician, found a lump on my thyroid.  She sent me to radiology for ultrasound which revealed several nodules on both sides of my thyroid.  Nothing to be concerned about.  My mom and grandmother both have Hashimoto's so it was a given I'd probably have it too.  A couple of the nodules were larger than 1 cm which is an indication for a biopsy.

During the biopsy, the attending physician was teaching a medical student and a resident.  While I was being numbed for the procedure, I felt like a circus sideshow.  I got a play by play of which needle he was using and why as well as instruction regarding jiggling the needle to obtain better biopsy results.  I actually love being a part of a teaching hospital even if it can be uncomfortable.  Those kids need to learn and I'm happy to be the guinea pig.  After numbing my neck, everybody left while the anesthetic took effect.  I was so upset.  I don't know why.  I was assured by my husband, also a physician, my PCP, and the doctor doing the procedure that it was unlikely I'd have cancer.  I had no family history, I am young, and I had several nodules.  I guess one big whopper is a bad sign.  Regardless of all the reassurance, I was panicked.  While I was alone, I distinctively felt the presence of my father, who passed several years ago, in the room.  What a comfort that was.  About a week later, I got the biopsy results - atypical cells indicating papillary cancer.  Now I know why dad was there.

A week after the biopsy, the thyroid was removed.  Surgery for a total thyroidectomy (TT) should take about 2 1/2 to 3 hours, but mine took 3 1/2.  I don't remember anything after they gave me the Versed, but when it started to kick in, my husband cried, "Mazel tov!"  I love that man.  He has the best since of humor.  I guess I begged the anasthesiologist to pray for me as well as the surgeon.  As I was wheeled off, I told the anesthesiologist, "you take care of me, you!"  Oy vay.

The surgery was more difficult than a "normal" TT.  The tumor had grown out of the thyroid bed and was inflamed and hanging on to some muscle under my collar bone - ew.  One of my lymph nodes also looked funky, according to the surgeon.  The big butterfly and lymph node were sent off to the lab for biopsy.

The hospital stay was great!  My nurses were wonderful.  Here is a picture of me with my lovely drain hanging out the side, affectionately called "the blow hole."

I didn't experience much pain, but my voice....oh my voice....was gone.  The surgeon did not nick the chords or any nerves but I could only whisper.  My vocal chords were paralyzed from the shock of the surgery.  That was the worst part of the whole ordeal.  I gained some tone to my voice but would get easily winded when talking.  Then, I would suck in air which sounded like an ancient squeeze box, to get the next sentence out.  I guess the vocal chords shut the airway when you talk.  However, when paralyzed they sort of stay halfway open.  Therefore, you don't have the strength of your voice and air goes easily out when you talk.  I couldn't cough, sniff, sneeze or clear my ears by holding my nose and blowing.  It was like my throat was one empty hole.  When I talked, I sounded like Gollum during a ring rant.  My precious.....

I stayed in the hospital for 5 days.  My calcium levels would not stabilize.  The parotid glands, which hang out behind the thyroid, help regulate calcium and can get damaged, paralyzed, or even removed during a TT.  I was told they were still there but probably stunned.  I think one got removed during the whole affair.  I must say, the hospital stay was quite nice.  I slept, and slept, and slept some more.  It was nice just to recover and sleep.

After coming home, I was put on Cytomel, which generates T3, a thyroid hormone.  We were waiting for the biopsy results before starting Synthroid.  If the biopsy was bad, the Cytomel exits the body quicker than Synthroid therefore, preparing me for Radioactive Iodine (RAI) treatment.  More on this later.  I felt really great on the Cytomel, but we did have to adjust as my TSH got around 0.02.  Normal is somewhere between 0.5 - 2.0, I believe.  At one point, I truly felt like I was unraveling.  Lots of itching skin and a massive panic attack.  I told my husband I thought I was flying over the cuckoo's nest.  We reduced the dose and I felt much better.

The scar is healing nicely.  Other than looking like a hairy gummy worm, no infection or other issues.

I even made a few necklaces to wear to Church so I didn't scare the little kids - Frakenneck

Cute huh?  I love the angel wing.  I honestly didn't have much trouble with the incision site.  The trouble began with my voice and a day alone with the kids.  What was I thinking?  Even with help, it was a catastrophe.  I was out of whisper mode but could not raise my voice at all.  It was bedlam.  Luckily, my in-laws have Amazon Prime so I ordered this bad boy which came the next day.  Would you like fries with that?

Scar is looking better, huh?  Anyway, the headset wasn't the most practical thing but it was much better than sounding like Vincent Borelli in "Casino."  Alas, vanity got the better of me and I decided not to wear it into Sprouts during a shopping excursion with my 9 year old.  Of course, he disappeared in the store and all I could do was gurgle his name as I stomped down the aisles.  The poor checker had to call his name over the loud speaker, "wandering, insensitive child, your vain mother is very agitated and looking for you!"  I wanted to strangle him when he finally showed up.  That afternoon I ordered a mic that clips to the clothing.  Its not the greatest but its working for now.  No more deadly sins for me.  I learned my lesson.  I wear that bad boy everywhere.  I don't care what I look like.

I have a consult for speech therapy with the possibility of getting a more powerful device, insurance willing.  I'm looking forward to the whole experience.  Maybe I'll come out of there an Opera singer.  As I said, the voice strength is improving as is the breathlessness.  Baby steps.

We received the pathology on the thyroid and it was no bueno.  Official diagnosis is differentiated papillary cancer with follicular variant.  The lymph node also contained papillary cancer.  Currently, I've been on a low iodine diet (LID) for a week and off all thyroid meds in preparation for RAI.  Here's the low down on RAI:  The thyroid is really the only organ that takes up iodine.  So, the idea is to starve the body of iodine for 2 weeks then give it a big whoppin' dose with a Trojan Horse of radiation.  The radioactive iodine then nukes any remaining cancer cells.  In conjunction with the LID, I have to stay off all thyroid meds, until my TSH reaches 30 or above so the therapy is most effective.

Soooo, I've been enjoying no dairy, no beans, no bread (I made my own which is okay), no soy, and no potato peels.  Yep, no potato peels, you can be jealous, its okay.  Its really not that bad.  I would liken it to the Paleo Diet.  That being said, I can't wait for a huge grilled cheese and some bacon!   Sorry, I'm not interested in the hunter/gatherer diet.

I'm going into the hospital for the first 3 days of treatment as I have little kids who could potentially be overexposed to radiation.  After, taking the RAI, the body emits X-ray type radiation which is really strong the first few days.  Here is a picture of my room.  Look a little like the bunker in "Lost?"

Lovely, isn't it?  It's better than nuking my kids though.  I can't take any electronics in with me unless I want to let the hospital keep them for 70 days until the radiation wears off.  I guess all hospitals are different regarding the protocol.  I've got some great books written by my lovely friend, Penelope King, to keep me company along with a 1000 piece puzzle.

Currently, I'm on day 7 of my journey to RAI.  I've been happily surprised at my level of energy despite not having any thyroid hormone.  I am experiencing achey joints but I've been trying to keep active as my endocrinologist says patients who are active during hormone withdrawal fare the best.  Today, I went to Church and surfed the web and truly felt terrible.  After a long walk and playing with the lils, I feel so much better.  Still achey but not cramping like I was earlier.  No hypo-hell, yet.

This has been a journey I tell ya!  I feel so blessed to have my family and wonderful ward family too, both of whom have been a huge support.  More updates to come.



I'm so sorry! That is really scary. I hope you can heal quickly and this is just a bump in the road. Good luck and I will be praying for you.

my3littleblessings said...

Oh my gosh..I need another update STAT! tears reading are my hero!!! you tons