Scan Negative, Tg 4.0

Good news: WBS is negative; Thyrogen-stimulated Tg is 4.0.

It seems there is less thyroid tissue in my body, and my Tg seems headed in the right direction (down). Even applying Dr. Ain's one-third rule ("Thyrogen-stimulated Tgs are about one-third the level of hypo ones"), I still come up with 12 (4.0 x 3 = 12.0), and no matter how you slice it (and believe me, I've sliced it every which way!) 12 is less than 16.7. So I feel good about it. It seems headed in the right direction.

Testing Week, Day 4, Hoag Slumber Party

I should just take my sleeping bag and PJs to Hoag Hospital. I've been there every day this week, and I have to admit that it's not a bad place to spend a little time. I had my second Thyrogen injection Tuesday (Day 2), my scan dose of radioactive iodine Wednesday (Day 3) and my whole-body scan (WBS) today (Day 4), and I'm having my blood work done tomorrow...looking for thyroglobulin (Tg), which indicates the presence of thyroid tissue/thyroid cancer (the blood work can't tell which). I hope for a very low Tg (would it be unreasonable to hope for an undetectable Tg?) and a clear WBS.

I've had some nice (read: warm and fuzzy) moments at Hoag this week and some funny ones, too. One fabric softener commercial moment happened while visiting the infusion center on Monday with my 9-year-old son, Jack. I'd never been to the infusion center before, and apparently it's where patients go to get chemotherapy, blood transfusions, and other major stuff I'm clueless about. When I went in to get my injection (Easy Street compared to absolutely everything else they do to patients there), Jack waited for me in the main waiting room. When I came out after the shot, Jack told me one of the ladies who worked there had given him a wrapped gift. Apparently, at Hoag they have an entire committee or group (the Toy Auxiliary) of people who go around and give kids who are there with their parents or caregivers gifts "for being so patient," Jack said. Is that the nicest thing ever? Also, both days I was at the infusion center, they had a group of older volunteers who made the rounds with a cart of coffee, muffins, etc., for patients--all free. I know Hoag is a big operation, and I guess this could result in cold, sterile care, but they have really thought of everything as far as making sure cancer patients are comfortable and well taken care of. It was touching to see the staff and volunteers compassionately interacting with patients.

A funny couple of moments occurred when I think I might have accidentally acted like a cougar to a male Nuclear Medicine tech when I got my 4 mCi dose of radioactive iodine Wednesday. This is a different location than Hoag's infusion center, which really isn't relevant or important, but I thought I'd throw that out there. First of all, let me just say that when I've been to this facility in the past, a female usually comes out to the waiting room to get me. Well, this time a dude came out, and I think I was initially so thrown off by the gender switch that I never fully recovered, and I wound up acting quite weird and spastic throughout my time with him. As he was leading me down the hallway to the weird locked door behind which was my dose of radioactive material), he asked me a few questions (which I dutifully answered), and I observed that he had a nice, deep voice. Nothing wrong with that, right? But what I said was (with an increasingly frenzied demeanor as the words tumbled out faster and faster and I became increasingly horrified with the impression I was making): "You should be on radio. [and then, worried he'd be offended because people jokingly tell "ugly" people they have a face for radio...I continued, faster...] I mean, not that you're not an attractive person, you are, but you should be a deejay or something because your voice is good. What I mean to say is you have a good voice. You have a good voice for radio... [And then nervously...] Heh heh."

Whatever.

Our interaction got a little more normal inside the dosing room where he gave me the 2 pills (I like my scan dose of radioactive iodine in two 2-mCi pills, thank you very much), and he asked me a few more questions about my thyroid cancer, and I presumably answered more normally, but I did spill a little bit of the bottle of water he gave me when I was pouring it into my mouth after the first pill went in.

My two sisters say I acted like a cougar to our waiter at Red Robin a few weeks ago, and I can see their point. I get hyper, and this comes off very, very friendly, and this may sometimes seem a little desperate...although I think I'm just earnest, not desperate, but whatever my true intent, I come off pretty weird and spazzy sometimes.

Oh well.

Life goes on.

I'll post my test results next week. I should have them Tuesday after my endocrinologist appointment.

Thyrogen: So Far, So Good

Got my first Thyrogen injection this morning, and so far, so good. No reactions or side effects as of now. Will write more when there's more to write. :--)

It's Testing Time Again

Follow-up, monitoring, checking for thyroid tissue...

Next week is testing week...meaning I get 2 shots of Thyrogen (one Monday, one Tuesday), a small dose of radioactive iodine on Wednesday, a whole-body scan Thursday and a Thyroglobulin (Tg) blood test Friday to see if anything has changed since my testing last December. My Tg was then 16.7 (hypo, not using Thyrogen), and my scan showed nothing.

Although it's awesome that I don't have to go off Synthroid for my testing this year (instead, I'll get the Thyrgoen injections, which will elevate my TSH for more sensitive testing), this also means my doctor can't compare apples to apples (a Thyrogen-stimulated Tg is always lower than a hypothyroid measurement). Thyrogen-stimulated Tg measurements are typically one-third the level of a hypo-stimulated Tg, so we'll have to keep that in mind when comparing numbers.

Does anyone else besides thyroid cancer patients care about comparing Tgs? ("Dude, what's YOUR Tg? Mine's undetectible.")

I wish for mine to be undetectible, because this would mean I have NO thyroid tissue anywhere in my body, and I would finally earn my NED (no evidence of disease) badge.

Yes, please!

In other news, my salivary glands are super pissed this week and last. It's likely I have permanent damage from my 2 radioactive iodine treatments. My mouth is dry, and I've had a lot of jaw pain near my parotid glands, which has resulted in some doozy headaches.

Good news: I ran the inaugural "Rock N Roll Los Angeles" half-marathon yesterday with my sister and 3 dear friends--Diane, Lisa and Valerie.

Bad news: a woman died at the Biltmore Hotel (where we stayed) on Saturday morning, a few hours before we checked in. It's not known yet whether it was a homicide, a suicide or an accident, although her husband has been questioned. "America's Got Talent" auditions were being held at the hotel, too (in addition to it being the host hotel for the half-marathon), and this made the scene at the hotel completely, absolutely, depressingly surreal. (Picture young girls in sequined costumes with guitars and cowboy hats, an obese transvestite whose "talent" was unclear but whose makeup and dress were scary as all hell, a gaggle of orange-turbaned dancers...all these people milling about the hotel lobby, singing and rehearsing and in costume...while policemen were swarming everywhere...investigating a death.) Our floor, the 11th, is said to be the floor from which the woman fell down the staircase (she's rumored to have fallen all the way to the 3rd floor), so we had an extra share of cops 20 feet from our room, at the top of the stairwell.

Is this what blogging is for? I highly doubt it, but I had a really weird weekend, and I'm getting ready to find out where I stand with thyroid cancer, and I really wanted to get all this off my chest!

I'll write next week as I get my testing stuff done...

No News is Good News~Suddenly Summer

I haven't posted in a while because there's nothing new going on with my thyca status. I'm being monitored with bloodwork and periodic neck ultrasounds, and there's nothing new to report. I've gotten used to this watch and wait thing--primarily because there's not a darn thing I can do to change it!

Summer is around the corner, Jack is almost out of school (8 more days, but who's counting?), and my mother-in-law is coming for a visit next week. The next few weeks will be busy but fun...Jack's in a talent show doing a hip-hop dance with some of his friends, there's lots going on at school, and the end of the school year always has an exciting feel to it.

I love summer. Here's to having a great couple of months!

The Finish Line

Well, we did it. My sister and I finished the LA Marathon on Sunday, March 21, 2010. It was her 10th full marathon and my fourth. I'm tired and sore as all heck, but I want to say this: Chef Gordon Ramsay (of TV's "Hell's Kitchen" fame) ran it, and he dropped out about halfway through, so my sis and I outran him. I love this! For exciting details about the race, click here.

Life is a marathon.
Pace yourself.

Running 26.2 Miles Away From Thyroid Cancer

Running a marathon requires preparation, patience and endurance--like most everything in life that's worth doing.

I've run 3 full marathons, and I'm currently training for my fourth. The first three were before my thyroid cancer diagnosis. If I finish the LA Marathon on March 21, it'll be my first marathon since having my thyroid removed and having 2 radioactive iodine treatments to try to get rid of the rest of the cancer cells...some of which, unfortunately, remain.

So I guess I'll be running with cancer. I guess this morning when I cooked breakfast, I cooked breakfast with cancer. I don't think about it that much, but it's true, I suppose.

In some weird way, if I finish this marathon (and I intend to; I've finished the others), I think I'll be telling my thyroid cancer off. ("Thyroid cancer, you suck. Get lost.")

I never would have started to run marathons if it weren't for my little sister, Carolyn, who started running marathons after her MS diagnosis almost 11 years ago. I always thought it was absolutely INSANE to run 26.2 miles (and I still do think it's insane, even though I do it), and while she ran her first 6 marathons, I just shook my head and said only crazy people would want to run that far. Then, in 2004, I hit a rough patch in life and started training for my first one. Training took my mind off what was bothering me at the time, and having a goal 6 months away gave my brain something healthy to fixate on.

Finishing the LA Marathon in March of 2005 gave me such a great feeling of accomplishment, and I earned a little respect from myself for myself. (Yes, I threw up behind a dumpster after I crossed the finish line, but that's small potatoes as post-marathon horror stories go...) Training for and finishing my next two marathons in 2006 and 2007 kept me focused on the positive while life, with its many challenges, moved forward.

2008 brought with it several neck ultrasounds, an inconclusive biopsy, a thyroidectomy, a cancer diagnosis and my first radioactive iodine treatment. 2009 brought another radioactive iodine treatment and some considerable worry because I still couldn't say I HAD thyroid cancer. Evidence points to the fact that I still HAVE it.

And now, training for my fourth (and, I think, final) marathon, I'm able to focus on doing something good for my body while it's in limbo between cancer and the cancer-free status I want so much. I know I can't run the cells out of my body, but maybe I can persuade them they're not welcome here.

Here's to crossing the finish line and convincing thyroid cancer that I can--and will--outrun it.

Every Hypo is Different

For a year and a half, I didn't understand the term "hypo hell," which we thycans use to refer to that period of time when we have no thyroid and have not yet started to take thyroid hormone replacement (required to continue living) or when we have to stop taking our thyroid hormone replacement (I take Synthroid) for 4-6 weeks when we are preparing for testing to see where we stand with our disease.

After I had my thyroid removed (and went hypo before receiving my first RAI treatment) and the first two times I withdrew from Synthroid to go hypo for scans and/or treatment, I felt pretty tired but not horrible.

This last December I went hypo for testing, and the experience absolutely flattened me. For almost 2 months (on the way to hypo and on the way back), I was freezing cold, exhausted as if a train had hit me, I gained weight, fell asleep at night at 8 pm, woke up exhausted, had insomnia, dreamed weird dreams all night when I did sleep, woke up sweaty in the middle of the night, lost hair, had very puffy eyes. I felt depressed and couldn't wait to feel like myself again.

I've been back on Synthroid for 6 weeks now, and I am finally feeling almost back to normal.

After this experience, I told my endocrinologist (who's in charge of my thyroid cancer treatment and follow-up) that I never wanted to go off my Synthroid again, and she agreed that we could do my scan with Thyrogen next time. YIPPEE! Thyrogen is an injectable drug that prepares your body for testing by raising your TSH (making you clinically hypothyroid) without having to stop taking your thyroid hormone. (I'd been prepared to find a new endocrinologist if she had insisted I go hypo. I felt that bad.)

Everyone's experience is different, and they say every hypo period is different, but I didn't believe that until this last round of testing. I'm here to tell you that it's true.

Three cheers for never withdrawing from Synthroid again!

Finding Motivation In Others' Challenges

My little sister, Carolyn, has Multiple Sclerosis. She's 41 years old and got the diagnosis 11 years ago when she was only 30. It's the remitting-relapsing kind. I'm sure it took her a while to come to terms with the diagnosis, but from the get-go, she has amazed our family with her courage, bravery, strength and positive friggin' attitude. She's a Tigger, and the way she has coped with her MS diagnosis has blown us Eeyores out of the water.

Carolyn's response to her diagnosis was to start training for and running marathons. She's completed 9 full marathons in the 11 years since hearing she has MS, and if all goes as planned, she'll complete her 10th marathon this coming March 21 in Los Angeles. (We're training for it together. I've run 3 marathons, all before my thyroid cancer diagnosis and treatment and only because I let Carolyn talk me into it.) Here's a picture of Carolyn and me after my most recent marathon in San Diego in 2007. Carolyn is on the left:



Since my thyroid cancer test results have come back not very awesome, I've been wondering how Carolyn got to a peaceful place with her MS. I asked her this last Saturday when we were running our 14-miler in training for the LA Marathon. (Long runs are the best time to receive great wisdom and have the heartiest laughs.)
She gave it to me straight and simple:
"1. It could be worse
2. I could die in a car crash tomorrow."

Yup. That's what she said. And you know what? It's helped me tremendously. Yes, I've thought "it could be worse" a zillion times since my diagnosis, and I've said it out loud many times, too, trying to remind myself not to feel sorry for myself. But that knowledge has not had a lasting effect on my perspective. I still feel sorry for myself occasionally, even though children are starving to death in Africa and Haitian babies have no parents to hold them. Whenever I think "it could be worse," I quickly switch into guilt mode, feeling like a self-centered jerk because I have the audacity to be sad over having a treatable cancer. But the way Carolyn said it, it finally hit home.

And yes, we could all die in car crashes tomorrow, and would I want to spend my final day on this planet worrying about a disease that will likely not kill me? No.

However, there is a place for planning and strategizing about how to deal with this disease. It's just a matter of keeping it in perspective...remembering that it's not a life-or-death matter (at least not now, anyway).

Watching my little sis go bravely about her life is one way I get enthusiasm to take my challenges head-on and with a positive outlook. I also find motivation to deal with this disease from others who have much worse prognoses than I do. Ric Blake on the advanced thyroid cancer listserv is eloquent and thoughtful and profound and has had to deal with a very challenging prognosis from the start.

Dana Jennings, a writer for the New York Times, has prostate cancer and writes beautifully about the ways in which a cancer diagnosis fundamentally shifts your perspective...and the perspectives of our families, friends, co-workers...

If you're looking, motivation to do better, to deal better, to be better, is everywhere. You just have to open your eyes to find it. And, of course, God is always there to remind you that you're not alone on your journey.

E-Mail To Friends & Family

Hi, everybody.

I hope this message finds you all healthy and happy in 2010. Some of you know the latest about my thyroid cancer saga (yep, it's become a saga...sigh) and some of you don't, but I'm just going to sum it up here and send it to y'all...and bore you with the details...

My blood test in December revealed that I still have some persistent thyroid cells. After a total thyroidectomy and 2 radioactive iodine treatments, when blood work shows that tissue remains, it's most likely malignant. On the plus side, an ultrasound and a body scan performed in December could not locate anything suspicious-looking, and unless and until imaging studies can locate something, there's nothing we can do.

So I'm in a watch and wait mode. I won't lie to you: It's not the "all clear" I was hoping for, and I hate "watch and wait," but maybe this is God's way of trying to teach me patience and to trust him. I'll be followed with periodic blood tests and ultrasounds, and we'll see what happens.

In the meantime, I'm training for the LA Marathon with my little sis, Carolyn (who has MS), and running is keeping me relatively sane. :--)

Hope all's well with each and every one of you, and I'll keep you posted as my journey continues.

Love,
Lynn

Update on Parotid Uptake

The parotid uptake turned out to be nothing, and the MRI is good to have because it also shows nothing suspicious--no masses or lesions or anything--or even lymph nodes that would warrant a closer look. So that's good. Now I don't feel so bad about having such shoddy, quickie neck ultrasounds now that I've had an MRI, which presumably shows everything and is not technician-dependent.

WBS Results and DCR Surgery

My scan results showed no definite thyroid tissue, but there was “intense focal uptake” of the radioactive iodine in my right parotid gland. So my endo told me to get a referral from my primary care doctor to an ENT to get that checked out. At first, I thought, “Well, this is another wild goose chase I’ll be sorry I went on,” but now that I’ve seen the ENT (this morning), I’m glad I’m getting it checked out. The ENT ordered an MRI of the neck, which I have scheduled for Friday.

This makes me feel very good because I think the ultrasounds I’ve had of my neck have been worthless. They look at the thyroid area, don’t see anything, and then they’re done. MRIs are not technician-dependent (that is, the results will be what they are no matter what the skill level of the technician performing the MRI). A week or so ago I was crying to Pommy that I would feel better if I had a thorough ultrasound, and my plan at that point was to try to get my endo to order another one (a “neck ultrasound” instead of a “thyroid ultrasound”), but an MRI is even better. So going to the ENT to investigate the parotid uptake will hopefully shed light on the parotid gland and give a good picture of the entire neck.

Also over the past few weeks, I’ve been pursuing correcting the weepy eye problem that has arisen since my last radioactive iodine treatment. I’ve seen an ophthalmologist twice, who did a few procedures to pinpoint the problem, which is a blocked nasolacrimal duct on the right side and excessive tearing. He referred me to a surgical ophthalmologist to look into doing the eye surgery (it’s called a DCR, or dacryocystorhinostomy) that will hopefully correct the problem by creating another path from my eye to the inside of my nose so my tears will drain the way they are supposed to. (Man, I’ve done a lot of research on a lot of different things since my thyroid cancer diagnosis not even two years ago.) I don’t have an appointment with the eye surgeon yet. I’m trying to collect some info on how many of these procedures he has done before I go see him.