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!
Friday, January 29, 2010
Wednesday, January 27, 2010
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.
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.
Sunday, January 24, 2010
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
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
Wednesday, January 20, 2010
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.
Monday, January 4, 2010
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.
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.
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