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...

The "C" Word

Yup, cancer. THAT dreaded "C" word. I certainly never thought it was something I'd hear at the age of 32, while pregnant with my first child.

I was diagnosed with papillary thyroid cancer at the end of July or the beginning of August. I can't keep track - it's been a crazy time recently. The good news is that the doctors all say that if you could choose your cancer, this would be the one to pick. It grows very slowly, is relatively easy to remove and there is a very low mortality rate. The problem is that it seems to grow more quickly during pregnancy.

It was discovered because I've thought for years that there was something wrong with my thyroid, but since labs came back normal, my doctor & I never pursued it. Once I was pregnant, I wanted to make sure everything was okay for the baby, so I had the ARNP check it out at my first OB appointment. She had labs done and palpated it. She said it felt slightly enlarged, but still within normal limits. Labwork came back, also slightly high but still within normal limits. She thought she had felt a nodule, so I was sent for a sonogram of my neck, which revealed a nodule about 3 x 4 cm, so I was referred to a surgeon. He did a fine needle aspiration, which is where they use several needles to get cells of the nodule to send to pathology. They said they would call the next Monday with the results, but I hadn't heard anything by Wednesday afternoon, so I called the nurse. She said the doctor had the results, but he hadn't told her anything yet. She called back later and said she hated to do this over the phone. I told her to go ahead. She said there was a small amount of cancer found. I think I took it easier than I might've otherwise, after learning the evening before that my grandmother, my last remaining grandparent, was diagnosed with breast cancer. The nurse said that it would probably be removed in a surgery, but that we needed to come in to talk to the surgeon. Long story short, he (and the endocrinologist I went to for a second opinion) advised removing it ASAP. There is no other way to really get rid of this kind of cancer, other than radioactive iodine, but more on that lovely subject later. There were certainly no other treatment options available at the time since I'm pregnant. So...

I had a total thyroidectomy on Friday, September 2nd. They estimated I'd be out for 1-1.5 hours, and had an ENT (Ear, Nose and Throat specialist) there to hopefully help the surgery go more quickly and smoothly. The surgery took about 2.5-3 hours. They took out the left side, which is where the original nodule was, had pathology do a frozen section to verify the cancer (yup, cancer) and then took out the whole shebang. The main left-side nodule was 5 x 4 x 3.5 cm, and there was another pea-sized nodule on the right side that was also cancerous. They removed eight lymph nodes and found cancer in three of those. They also removed the parathyroid on the left side because it (they? not sure if they took one or both) was right next to the tumor. The parathyroid is what regulates calcium usage, so I had blood drawn every six hours while I was in the hospital to check calcium levels and am now to be on a calcium supplement in addition to the thyroid replacement hormone.

Frodo, our little baby, was monitored before and during the surgery by checking her heartbeat. They also checked her heart tones at least every six hours while I was in the hospital and she sounded good and strong every time. The second trimester is best time for a surgery and, at 21 weeks, we were good to go. Hubby and I were both worried about her, but the doctors said the risks of letting the cancer go during the rest of the pregnancy were worse than the risks of the surgery.

After the surgery, the worst part has been getting over the breathing tube. The incision hasn't hurt, except for the first couple days and the few times I accidentally stretched too far. The drainage tube was a pain, especially since it was left in when I went home. I had it taken out the following Tuesday afternoon and everything is healing nicely. I have a very slight infection in the incision and there's some puss under the glue - they used dissolving stitches inside and glued it shut on the outside - but I'm on an antibiotic and go to see the surgeon about it on Wednesday. My PCP didn't want to mess with it when I saw her on Thursday. I am having to be careful not to overdo it, and have failed miserably both Wednesday nights - being in charge of 46 3-5 year-olds while short on leaders does not lend itself to resting much. I've been having some pain - fibromyalgia and pregnancy-related - after Cubbies and during the next several days. I had a nurse in the OB's office (we share some of the same space at my new job) threaten to tell on me to my doctor. I'm working on delegating more to relieve some of that stress and pressure. My hubby helps by fussing at me to sit down more. I did go back to work the next week after the surgery and worked half days Tuesday through Friday (Monday was Labor Day). I did full days last week and am getting my energy back. Mostly.

I have an appointment on October 7th to talk to my endocrinologist (endo) and go over the pathology report. I have a copy, but I don't speak much medical-ese, so it might as well be written in Old High Gallifreyan. The doctor I work for looked the report over and said that it is a more aggressive form than hoped for, and the surgeon told my family during the surgery that he would advise we do the next step of treatment ASAP after Frodo is born in January.

That next step of treatment is radioactive iodine. The surgeon is pulling for doing it six weeks to two months after the birth, but I want to breastfeed as long as possible. The endo said that, depending on the aggressiveness of the cancer, it can be postponed for even up to two years. I'm pulling for a year, because once I have this treatment, I can't go back to breastfeeding Frodo. I've talked to a pediatrician who said that I would be able to "pump and dump" for two weeks, but the milk ducts have to be cleared out before the treatment and, even if that wasn't done, the remaining radiation would nuke the baby's thyroid. I guess we'll see what the endo says on October 7th. This will be the toughest part, as I'll be radioactive (I'll need a Superman cape when I go for the treatment ;) ) and will be in isolation for one to three days (guess-timating) at the hospital, then will need to be in isolation for at least two to three weeks (also a guess-timate) at home. No holding my baby, no sitting with or sleeping next to my husband. That hit me very hard when I first learned that. I didn't even have my baby in my arms yet, and they were telling me I wouldn't be able to touch her for weeks! I did have a lady on my hair forum tell me that all three of her babies were in the NICU for weeks or months, and she had to go most of that time without holding them. If other parents can get through that, so can I, but I'm certainly not looking forward to it. We're already discussing getting a webcam for the main computer and I've got one my laptop, so we can communicate that way. We'd like to find a video baby monitor for the nursery as well.

Well, that's the latest on the cancer saga. I'll update again once we've met with the endo next month. I know there are a lot of people out there showering us in prayer and it means so much to know that Heaven is being bombarded on our behalf. Thank you, thank you and keep the prayers coming. :)