My Thyroid Cancer Journey
Three and a half years ago I was diagnosed with cancer, albeit the “good” kind: thyroid. Considered “good” because it is the only type of cancer that doctors ever use the word “cured” with. I kept a journal during my ordeal in order to keep my friends and family updated during my surgery and recovery; and also with the hope to reach out to others who are newly diagnosed, to give them some comfort when they just don’t understand what’s happening with their bodies during their ordeals. Today I relish life because I am cured. Here is my story.
15 June 2009: The Butterfly Affect
No, it’s not a typo. I know most people are familiar with the term “the butterfly effect”, connected to chaos theory, and although that does apply, I felt that I’ve been more affected by my thyroid. Affect defines as:
- Definition: influence, affect emotionally
- Synonyms: act on, alter, change, disturb, impinge, impress, induce, influence, inspire, interest, involve, modify, move, overcome, perturb, prevail, regard, relate, stir, sway, touch, transform, upset
So there you go. This little butterfly-shaped gland has literally become a pain in the neck and altered the way I look at things. I’ve had an enlarged thyroid for several years, and my TSH tests just kept coming back normal. I had an ultrasound five years ago that confirmed a multi-nodular thyroid, but again, blood tests were normal. It was only until a few weeks ago when I went to my primary care nurse practitioner about allergies, that she decided to take another look. She seemed to think that my left nodule had grown in size recently. So off again to radiology for another ultrasound that confirmed the nodules had grown.
Next step was a needle aspiration biopsy. Not fun, let me tell you! I’m a bit claustrophobic anyway and laying there with an 8” needle stuck in my throat while a doctor fishes around for cell samples is not my idea of a fun time. I bruised badly and it’s taken over a week for the pain to subside. Needless to say, the pathology report came back confirmed that I had a follicular neoplasm in the left lobe, and suspicious for papillary carcinoma in the right lobe and central thyroid. Basically what that means is it’s necessary to remove my entire thyroid, and the sooner the better.
That’s all we know at this point. We have an appointment on Wedneday, 17 June with a surgeon (the same guy who took out both my and Joe’s gallbladder last year). I’ll post more after we know when the surgery will be. Right now we’re concentrating on eating lots of antioxidants, meditation, and qigong (pronounced chi-kung), which is an ancient Chinese form of moving meditation that has been documented to actually help cure cancer. I’m doing more research, but for now, everything is helpful.
18 June 2009: The Surgery
Okay, surgery is scheduled for 9:30am on 1 July, a Wednesday. The surgeon, Dr. Agee, is the same guy who took out both my and Joe’s gallbladders, and is very familiar with this surgery. The appointment with him last over an hour, and he went way into graphic depth about the surgery, so we have a very vivid idea of what’s going to happen. I will spare all of you that picture! Needless to say, I will be out of work for at least two weeks, and in the hospital for up to four days right after the surgery.
Good news is, he said that even though the initial pathology report stated follicular cancer, and suspicion of papillary carcinoma, that doesn’t mean I have necessarily have cancer. Apparently the FNA (fine needle aspiration) biopsy can often have false positives. He actually said it’s close to 80% chance of being a false positive. Unfortunately, the only way to prove it one way or another is to biopsy the actual tissue. And since I have nodules and suspicions on both sides of the thyroid, then it just makes sense to remove the entire gland and test it all at once. Otherwise, I would have had to go through two surgeries. If I am in that 80%, then I don’t have cancer, and they put me on Synthroid for the rest of my life and I’m good to go. If, however, I do have C, then it’s a long, drawn-out, exhausting process to find any possible remaining tissue that’s infected, and radiating them with iodine. I won’t go into that horrible process unless we have to.
So that’s it. Now I wait a couple of weeks, and hope I’m in the majority. Will post more as we know it. Take care everyone!
30 June 2009: Tomorrow…
Well, tomorrow is the big day. I’m not going to lie — I’m really scared. Having the gallbladder out is one thing, but this one has so many more risks: damage to the parathyroid glands and vocal chords… and I’m terrified of waking up with the trach-tube in. Doubt it’ll happen, but it’s still a fear.
We should know by Friday (hopefully) what the pathology comes back as — either benign or malignant. If benign, I’m home free. If malignant, they’ll keep me off of Synthroid (synthetic thyroid hormone) for several weeks preparing for the radioactive iodine treatment. Let’s all hope that’s not the case. I guess being off of Synthroid without a thyroid gland is pretty much hell. Extreme fatigue, depression, hair loss, weight gain. That stuff worries me more than the actual surgery does.
Since Joe and I have our nifty new iPhones (big smile), it’ll be easier for him to keep everyone up to date as to what’s going on. After phone calls, he’ll post onto Facebook for those of you who are on there, then he’ll send texts to some. I’ve given him authorship to this blog, too, so he may put something up here as well. If not, I’ll post how I’m feeling as soon as I can get my hands on a laptop. Oh yeah, I’m also worried about computer withdrawls! 😉
Wish us luck and love, and we’ll be in touch soon. Take care everyone.
02 July 2009: Surgery, Day 2
Update from Joe…
Tara made it through surgery just fine. Dr. Agee told us that the right lobe of the thyroid was much harder to remove than the left side. It was much more fiberous, and larger.
08 July 2009: Recovery
Well, it’s been a week since the surgery, and all in all, it’s not too bad. I still have my voice, thank goodness, but am still sore and my throat and neck are all swollen, although the swelling is going down quicker than expected. Plus, it looks like I survived a slasher movie, with a 6 inch scar across my neck. Michael: thought you’d get a kick out of that one.
The surgeon told us that even though the initial biopsy came back as cancer, that a lot of the time there’s an 80% chance of false positives and that it’s benign after they do pathology on the actual thyroid tissue. Well, I never was good at odds. I didn’t beat these. Mine was malignant papillary cancer in both lobes of the thyroid. Good thing is, they removed it, and the lymph nodes looked clean. Bad news is, over the next two months I have to be off of the Synthroid (synethetic thyroid hormone), which has some nasty side effects: extreme fatigue, depression, weight gain, hair loss, cold, dry skin, and a few more I can’t remember — oh yeah, brain fog and lack of concentration.
They do this because when the body is starved of the thyroid hormone, it makes any remaining, hiding cancer cells very attracted to the radioactive iodine which comes next. Once they’ve found those, I take the iodine, which leaves me radioactive for about a week. They kill the cells, and I’m cured, but I’ll have to be sequestered for a week. Luckily, we have the master suite upstairs with my own shower, toilet and bed, but Joe and the cats can’t be near me during that time. That’ll probably happen some time around my birthday. Lucky me.
But first they want me to get over the surgery, which is over the next 2-3 weeks. I actually feel better than when I had my gallbladder out, but I can’t move my head around much, and it feels like I have a perpetual hand around my throat all of the time. That’s the worst part. I’ve almost gotten over the mini panic attacks of being choked, but it’s still really uncomfortable. I am off of all pain meds except for Aleve or Tylenol, so apparently have a high threshold for pain.
06 August 2009: The Fun of Waiting
Well, we’re five weeks in now since the surgery. I can say safely now that I’ve bottomed out with the hypothyroidism. If there was any remaining hormone left in me after the surgery, it’s gone now. Each day I feel more and more tired, even though some days it’s difficult to nap. I told Joe I think I’m so exhausted, that I’m too tired to even rest. I’ve gained weight, am puffy and have edema, and found out yeserday that I have mild orthostatic hypotension. Basically, my blood pressure is dropping too quickly when I stand up, so it feels like my ears are filling up with water, I get dizzy and sometimes have to fight not to fall down. It’s frustrating, so I’ll warn you all reading this now that I’m using this blog as not just a way to keep you all in the loop, but also for myself to vent a little about how I’m feeling. Today is one of those days.
I had my TSH tested last week and it was at 30.1, so almost to 40 but not quite. We’ll try again next week. As soon as it hits 40, we’ll schedule the full body scan to see if we can detect any remaining thyroid cells. If none are found, then I’m good to go on Synthroid and off on my merry way. If they do find some, then as I understand it, I’ll have to do a two week iodine-free diet, then take the dose of radioactive iodine to kill those cells. That’s when I’ll probably have to be sequestered for about a week while I’m leeching green radiation emissions with possible violent mood swings and unprecedented strength — no, just kidding! But I will be radioactive and have to stay at least 6 feet from anyone.
Contrary to the above statement about being radioactive, I find myself not nearly as easily amused (even though Joe keeps trying), and the annoyance trigger is much more sensitive. Getting up at 5:30a in order to catch the bus at 6:40a is really annoying! It pretty much renders me useless for the rest of the day. I know I need to work — my surgeon released me to only 4-6 hours per day — but with a one hour commute on either end of that 5 hours that I average, that’s pretty much an entire day of being up and out and about. My office has been supportive of the only half days, I mean, really, they don’t have a choice at this point, but when I’m here, it’s business as usual and they expect the same level of work out of me as before. Apparently I “look great”, so when they (incessantly) ask me how I feel, and I say “tired”, they kind of look at me like they don’t believe me because I don’t show outwardly that I’m “sick”. I do try, but I struggle with concentration, I’m sleepy, and my muscles feel weak and achy. And on days that I stay home, it’s pretty much expected that I do some work from there as well. Luckily I have a job that I can do from home, and would much rather do that so that I don’t have the exhausting commute, but work is work, it’s still tiring.
This morning I got caught in an intense rain storm while walking the 3 blocks from where my bus drops me off. By the time I got to the building, my pants and shoes were completely soaked, my jacket mostly soaked, my leather bag stained with water, and I am still freezing cold. Bad thing about not having metabolism, is I’m cold a lot now. Guess that is a major contributor to my mood this morning.
11 August 2009: Day 42
Well, day 42 without a thyroid, and without Synthroid. On day 40 I woke up with extremely weak limbs, and taking just a few steps is terribly laborious. The exhaustion is overwhelming at times. Yesterday morning I woke up at the usual 5:30a to get ready for the bus to work and uncontrollably broke down into sobs and couldn’t stop. I was so frustrated and so exhausted that I just couldn’t bring myself to do anything but get back into bed. Now I’m trying to work from the sofa.
This afternoon we’ll go and get another blood test to see if my TSH has breached the 40 mark, let’s hope! I’ve finally hit the wall that I was hoping to avoid. Things had slowed down, but I was still coping and getting around okay. Now, I get about five minutes and I’m done. **sigh**.
13 August 2009: TSH Madness
Well, 2 weeks after the last TSH test, which was at 30, I had more blood drawn yesterday and it’s only at 33.4. SO FRUSTRATING!!! We were sure because of how bad I felt, that it’d be higher. Nothing can be done to make me feel better until after it’s at 40. This could take forever! I asked the nurse if there was anything to do to make it go faster, and told her that I can barely move around because of muscle pain and weakness, and she basically said, “oh, well.” *&^%*^F%$#!!
25 August 2009: And the magic number is…
45.9! Finally, the wait is essentially over! Still don’t know when the body scan will be, but hopefully only a few days. HUGE sigh of relief and elation! Will keep all posted on when the scan is and what the results are. Thanks for checking in on me. 🙂
12 September 2009: Day 74: I’m radioactive!
Yesterday, on 9-11-09, 74 days after my surgery, I take the last step in recovery and officially became radioactive. We went to the hospital, two different people gave me a set of instructions about flushing, washing, keeping to myself, etc., then they gave me an anti-nausea pill and took me into a little lead-lined room where they carefully took this little plastic bottle from a lead container, told me to swallow the big blue pill inside, then RUN! RUN HOME QUICKLY! (The tech had a great sense of humor, and since he personally had gone through what I currently am going through, the comic relief was well received. When I complained about how the hypothyroid state was so crappy, and mentioned that my TSH was probably close to 80 by this point, he rolled his eyes at me and called me a “little whiner” since at the point where he went radioactive, he was virtually catatonic and his TSH was 135! Okay, point taken, I was lucky to be functioning at this level and I should be thankful.)
So, it’s Saturday afternoon, and has been 24 hours since I took the pill. Nearly 80% of the radiation should be out of my system at this point, mainly through urine, but also sweat and saliva. All in all, I feel “normal”, at least normal compared to how I’ve been feeling for the last month. I have had a bit of nausea, but think part of that is all of the sour candies I was instructed to eat to keep my salivary glands working. (The one side effect from the radiation.) I stay secluded until Monday morning, then that afternoon I will go back to the hospital for a geiger-counter reading, which should be relatively low. After that I still have to stay 6 feet or so away from anyone for the remainder of the week, but don’t have to be isolated. On Thursday, 17 Sept., I will have another body scan to double check that everything worked, then I’m done!
GOOD NEWS IS: My doctor deferred opinion on when I could start Synthroid to the radiologist, and he said I could start the hormone on MONDAY!! So only a day and a half more and I get to finally start taking the magic (in my mind) pill that will allow me to finally start getting back to normal.
Since I recently made this blog available for anyone, for any of you out there who have recently been diagnosed with thyroid cancer, I will give a list of various symptoms that you will most likely go through while being starved of the thyroid hormone. Not to scare anyone, but it really has been so much more uncomfortable than I ever could have imagined, so if I can help anyone understand what might happen to them, and put their mind to rest whilst it’s happening, I have done my job with this blog. Here goes:
- Extreme fatigue and lethargy
- Lack of concentration
- Foggy thinking/decision making
- Muscle weakness (I can barely walk across the room some days)
- Muscle cramping, burning, stinging
- Extreme edema, especially limbs (hands, fingers, feet, calves, forearms)
- Hands and fingers fall asleep seconds after starting to use them, also when sleeping
- Stomach distention (sometimes feel pregnant because of stomach fullness)
- Lower back pain/sciatic nerve pain
- Fullness in the throat/neck
- Headache/dizziness/orthostatic hypotension (sudden drop in blood pressure when standing)
- Tinnitus (constant high pitched hum in both ears — and I do mean CONSTANT)
- Weak, husky, gravely voice
Every day something new seems to pop up, and I know it’s all related to having no thyroid or supplement hormone, but I still worry. I keep googling for a post from someone that may confirm what I’m feeling as being related to this state, so for those of you like me, I hope this list gives you a bit of peace. I know it doesn’t help with the near-maddening state you may be in, but believe me, peace of mind can go a long way. I suggest stretching as much as possible, or go through yoga or tai-chi or qigong if you know it, just keep moving as much as you can to keep the sinews long and the circulation going.