Linda's Thyroid Cancer Page
On making decisions about your health:
"As long as you are of legal age and able to think clearly, logically, and
coherently for yourself, you should never cede that responsibility to anyone
else - not to your doctor, not to your friends, not to your family, not to
the health gurus, and especially not to the media."
- Dr. Dean Edell, in
Eat, Drink and Be Merry
I will probably never get around to writing my thyca story, but since I was diagnosed more or less
during pregancy, my
has some of the thyca story in it.
I do have some photos of my
This section of the site is a
in which I will record any miscellaneous thing I feel like saying that has anything
to do with thyca.
September 15, 2006
Long time no write -- so long in fact that someone emailed me to make sure I'm OK! (Thanks
SimianBrute1!) But no news is excellent news, apart from my six-month checkups and daily
150 ug pill, I don't think much about my thyroid. But I do have a little rant I've been
saving up since my last RAI treatment, so here goes.
Have you been wondering what to bring with you to read when you check in to the hospital
for your RAI? I have one piece of advice: don't bring Agatha Christie. I had read a bit of
Christie in the past and thought it would be suitable for a convalescence. So I brought a copy of
Miss Marple: The Complete Stories to the hospital with me. Bad choice.
Ms. Christie apparently takes a very dim view of invalids.
Of the twenty stories in this volume, there are two which center on
an invalid ("The Blue Geranium" and "The Case of the Perfect Maid"). In both the invalid is
a perfectly horrible person. One is a hysterical hypochondriac, the other ridiculously demanding:
"Lavinia is very good to me. Lavvie dear, I do so hate giving trouble, but if my hot water
bottle could only be filled in the way I like it - too full weighs on me so; on the other hand,
if it is not sufficiently filled, it gets cold immediately!"
"I'm sorry, dear. Give it to me. I will empty a little out."
"Perhaps, if you're doing that, it might be refilled. There are no rusks in the house,
I suppose -- no, no, it doesn't matter. I can do without. Some weak tea and a slice of lemon --
no lemons? No, really, I couldn't drink tea without lemon. I think the milk was slightly
turned this morning. It has put me right against milk in my tea. It doesn't matter. I can
do without my tea. Only I do feel so weak. Oysters, they say, are nourishing. I wonder if I
could fancy a few. No, no, too much bother to get hold of them so late in the day. I can fast
Lavinia left the room murmuring something incoherent about bicycling down to the village.
Miss Emily smiled feebly at her guest and remarked that she did hate giving anyone any trouble.
That passage is admittedly pretty funny. But somehow, in the middle of hypo hell, one is already
wracked with guilt from causing so much trouble to one's loved ones, and physically feeling
so sluggish and lazy and worthless. The last thing someone in this sorry state needs
is a body of work where everyone in a sickbed is the worst sort of malingerer.
(Past Entries in my Thyca-Blog are also available.)
Celebrities with Thyroid Cancer
Here is the list I have, any additions please e-mail me!
Sorry for the long gap! Thanks FMF for your email about Catherine Bell!
- U. S. Supreme Court Justice
([medullary?] thyca diagnosed c. October 2004 at age 80)
The press release
states merely that Justice Rehnquist "underwent a tracheotomy on [October 25] in connection with
a recent diagnosis of thyroid cancer."
Hopefully we will learn more soon. He has apparently had some back problems over the years but
this is his first bout with cancer.
([papillary?] thyca diagnosed 1989 at age 21)
Ms. Bell is featured in the Thyroid Cancer Survivors Association's
Thyroid Cancer Awareness Brochure.
her thyroidectomy scar
(I can see it in this nice photo).
she writes that she doesn't cover her scar because "I think it's kinda cool". :-)
"I'm living proof that early detection and treatment work," she says.
- Movie critic
(papillary thyca diagnosed February 2002 at age 59)
Mr. Ebert noticed a lump in his neck while showering in December 2001, and had his
thyroidectomy on February 22, 2002 followed by RAI treatment.
has a witty article about him and thyroid cancer.
Mr. Ebert actually has one of the major risk factors for thyroid cancer:
as a youth he was given radiation treatment for an ear infection.
- Author Isaac Asimov. (papillary thyca diagnosed in 1972 at age 52)
Please see my write-up of
Dr. Asimov's Thyca Story.
- Rock singer
(diagnosed April 2000 at age 55)
The page with the best discussion I can find of Stewart's reaction to his diagnosis is at
which makes the (astonishing!) statement "His celebrity lifestyle included the
usual vices of rock stars, and his drinking and smoking are likely suspects for a
recent diagnosis of thyroid cancer, which has the same 'lifestyle' risk factors
as other oral cancers." Huh? Well, "vices" are not on any list of
thyroid cancer risk factors
that I'm familiar with! Just goes to show how much you can trust health information
from the Internet, even sources with official sounding domain names!
- Author Marc Ian Barasch. (diagnosed in 1986)
A fascinating Chicago Tribune article (by Bob Condor)
about Marc Barasch from February 2001
describes how, while still asymptomatic, he began to have intense dreams involving his neck.
"One night six long needles were stuck in his 'neck-brain' by a circle of
primitive tribesmen. Another night, a 'World War II bullet' was lodged in his neck,
and a kindly Chinese surgeon removed it." The first time he went to the doctor, there was
still no palpable lump or any other indication. Later, the doctor found a thyroid nodule
which turned out to be malignant. Marc went on to write books about the power of dreams,
Healing Dreams : Exploring the Dreams That Can Transform Your Life
(ISBN 1573221678, 2000).
(Note, I haven't read the book, if anyone has any further info please let me know!)
(medullary thyca diagnosed in 1981 at age 30)
There's an article about this up at the Thyroid Society web page,
- Folk singer
An unofficial fan website at
says she was treated for breast cancer in 1996 and for thyroid cancer in 1998, and that
"Nanci says her prognosis is good and the disease is in remission."
- Actor Richard Crenna. (diagnosed approximately 1998 about age 68)The Internet Movie Database at
mentions his thyca under the heading "Trivia" ... (no comment :-)
He passed away at age 72, on January 17, 2003, of pancreatic cancer diagnosed
in late 2002.
- Olympic-caliber triathlete
(papillary thyca diagnosed in 1999 at age 38)
She had her 'ectomy immediately after diagnosis, but
decided to postpone her radioactive iodine ablation until after the Olympic
tryouts in May 2000. She didn't make the team, unfortunately, and had her RAI
in June 2000. Read more at
- Baseball player Eli Marrero. (#26, catcher for St. Louis Cardinals)
He had a total thyroidectomy after being diagnosed in February, 1998, and went on
to win the 1998 Cardinals Rookie of the Year award.
- Baseball player Jerry DiPoto. (#45, relief pitcher for Colorado Rockies)
Missed much of the 1994 season after his diagnosis.
- Baseball player Danny Jackson. (retired in 1997)
- Olympic-caliber Canadian rowers Emma Robinson and
(diagnosed 1999 and 1997, respectively).
- Washington Redskins majority owner Daniel M. Snyder. (papillary thyca
diagnosed in 2001)
There is an astonishingly thorough Washington Post article about this at
My favorite line from the article: "Snyder has been put on a strict diet."
Hee, hee, we all know what that is. :-) The article doesn't say any more about the diet,
or that it is only temporary. A minor nit for an article that does a generally good
job describing thyca, its treatment, and its impact.
The Most Awesome 50-Microgram Iodine Diet
Some of us follow a low-iodine diet prior to RAI scanning or treatment. Usually it's handed to
you in the form of things to avoid. (An example is
My terrific endo gave me instead a 50 Microgram Iodine Diet
based on an article in a medical journal.
It is AWESOME. Rather than being just a list of things to avoid, it is a list of
the foods you CAN eat, and in what amounts. It is truly a "diet" at about
1400 calories per day. I have used it twice, and lost seven pounds each time. (Hooray!)
But the best part is the feeling that I'm truly flushing the iodine out.
My Letter to the USDA
For those of us who follow a low-iodine diet for scanning and treatment,
and want to get more exact information about the iodine content of foods, check
for my little rant and a letter to the USDA.
Fun With Nuclear Medicine
Ever wonder, when you take your dose of I-131, just how much iodine you are ingesting?
It's less than you think!
are the notes from my calculation. (Performed at 2 AM during hypo insomnia - I had nothing else to do!)
It was gratifying to find out that I really did learn something in that horrid physical chemistry class.
Thank you, Professor Van Hecke!
Prophylactic Potassium Iodide for Nuclear Accidents
Go here to read my pointless rant about prophylactic KI,
if you are really interested.
The Dumbest Thyca Riddle
Q: What does a person taking RAI have in common with a state-of-the-art commercial
A: They both emit xenon ions.
(Hey, I WARNED you it was dumb. Or maybe I should say lame.)
Some explanation is needed (and finally I get to rattle on about my vocation... yep I have been
working on communication satellites lo these ten years!). Part One of the explanation is that
I-131, being radioactive, breaks down by emitting a negative charge from its nucleus (in the
form of a beta particle, AKA an electron). This changes one of the neutrons in the nucleus
into a proton. The radioactive iodine atom originally had 53 protons - when it suddenly gets
54, it's not a radioactive iodine atom any more. It has become a xenon atom. (Look up
in the dictionary, you'll see I for Iodine at #53, and Xe for Xenon right next door at
#54.) More precisely, it has become a xenon ion, because the electron hurtles itself away from
the atom, travelling no more than three millimeters before smashing into something, hopefully
a cancerous thyroid cell's DNA which it obliterates (hooray!).
What happens to the xenon atom then? Xenon is gaseous and forms no chemical bonds, so it
dissolves in your bloodstream like the air you breathe. Eventually it will be emitted from
your lungs or skin and enter the atmosphere. Does it affect you while it's in your body?
Absolutely not, it is a gas very much like helium and can't hurt you at all. Besides, you
are getting such a vanishingly small amount of it
(see Fun With Nuclear Medicine) that even if I-131 turned into arsenic it
wouldn't hurt you.
Part Two of the explanation is the satellite part. You know that a satellite requires a bunch
of fuel to get up into orbit, that's usually the job of the launch vehicle (rocket). But, once
it's up there, the satellite also needs some fuel to make minor adjustments to its orbit from
time to time ("stationkeeping"), or occasionally to move to a different orbit. Various different
technologies are in use to make the thruster "burns" in space, usually with chemical fuel.
Another approach is to use an ion drive, which generates thrust from the electromagnetic
repulsion of ionized atoms or molecules. An especially nifty "engine" of this type is Boeing's
Xenon Ion Propulsion System
This contains a reservoir of xenon ions, which are squirted out through the thruster nozzles
to accelerate or decelerate the satellite. Xenon was chosen because it is a heavy ion,
chemically inert, and very safe. As the link above describes, the engineers considered using
cesium or mercury as the propellant ion, but cesium was too chemically active and caused
corrosion to the satellite, and mercury is too poisonous. (Let me stress here that xenon is
NOT radioactive. Radioactive fuel has been used for satellites in the past, but no one wants to
put radioactive materials in space if they can possibly avoid it, so this is not popular and
I don't think it's done any more.) Xenon is a good choice for satellite propulsion because it
is very safe, even though it is obscenely expensive compared to mercury or a number of other
candidate fuels. A xenon ion drive was also used on
NASA's Deep Space 1,
and will be used on
the Dawn Mission
to investigate the asteroids Ceres and Vesta, launching in 2006.
Resources and Links
- FIRST THINGS FIRST:
You're The Doctor
- This fab article by fellow thycan David Whitehorn-Umphres sums up why you need to be your
own advocate, and what an incredible asset the Internet can be. I simply must quote:
"The next time somebody tells you the Internet is a waste of time or isn't
transforming the world, please do me a favor. Ask him if he has ever had cancer."
- Thyca: Thyroid Cancer Survivors' Association
- Useful information and a big list of great links.
- Subscribe to the THYCA mailing list. The mailing list includes MD's as well as fellow
thycans, and is your true real-time source of support. Where else can you
post a message about Hypo Hell and have everyone understand what you're talking about?
The list has moved to Yahoo Groups. If you are already a Yahoo user join the list at
OR, subscribe for basic list services only by sending a blank email to
If you are not a Yahoo user and don't want Yahoo to get your private email address,
a friend of mine suggested the following:
There are also specialty email lists for people with advanced thyca, as
well as for those with pediatric, medullary & anaplastic thyca, more info is available at
- Create a new Yahoo ID/email:
- Join the group with that ID/email
- Choose the option NO EMAIL/WEB ONLY viewing format. "This way, they never get to your real
account, you never have to sign in and see all the spam loading up, and it just junks up their
own servers anyhow :)"
- Thyroid Cancer Support
- A forum hosted by Mary Shomon.
- Papillary Thyroid Cancer - An Inquiring Patient's Guide
- This site hasn't been updated in a while, but I still recommend
Julia Lawrence's eloquent FAQ essay on the topic of "How did I get this cancer?".
- Thyroid Cancer Survivor Tips
- By a mom. Includes some nicely gruesome photos from surgery, good questions to ask
your nuc med dept, and a preparedness list for entering RAI isolation.
by Steve Dunn - I highly recommend this site, with tons of great info like how
to read your pathology reports, and what do stages really mean? Good support info too.
- Dr. Dean Edell's
Site at HealthCentral.com - I hate cluttered over-graphicked pages, but this one
is worth it. Not thyroid or cancer specific, but it's got neat health info you won't
get anywhere else. From "America's Doctor," a true advocate of the scientific
- Megan Stendebach's Thyroid Cancer Songbook
is a real gem. My favorite is the "Blue Bayou" takeoff in "Thyca's Greatest Hits."
- Tims's Thyroid Cancer Journal
is the experience of a man in Colorado. Contrary to what he says (or what he said in a 1998 entry
is no longer true), you CAN give blood again.
American Red Cross guidelines specify that blood will be accepted if it has been
five years since your surgery or last radiation treatment. So get out there and donate!
I am looking forward to doing so again in 2005. BTW, my insurance agent assures me that
when I have been cancer-free for ten years, I can return to the preferred category.
- A couple more personal thyca pages are
Karen Ferguson's Homepage
Also see Thyca Stories by
at The Cancer Survivor's Network.
- Ric Blake is also being featured in a series of articles
in the Massachusetts/New Hampshire
Eagle Tribune. This is an
covering Ric's story as he deals with advanced follicular thyca. Lots to think about on being
proactive in your treatment, talking to docs about what to expect, and rolling with the punches
when the unexpected comes along anyway. Most of us will not have this kind of experience with
thyca (i.e. chemo and external radiation), but all of us should strive to be as well prepared
as Ric. And to maintain as good an attitude!
- One Man's Battle with Terminal Illness
- January 28, 2001
- Patient Fighting So Others Can Die
'A Good Death'
- January 29, 2001
- The Agony of Waiting
- April 8, 2001
- Acupuncture Brings Relief after Seven
Months of Pain
- May 20, 2001
- Terminal-cancer Patient Hopes it's The
Perfect Time for Throat Surgery
- June 3, 2001
- Despair Leads to Renewed Hope
- June 17, 2001
- Seeking a Miracle from the "Wizard"
- June 17, 2001
- Enduring the Ordeal of Treatment
- July 29, 2001
- Now it's Time to Wait, Wonder
- August 19, 2001
- Ric Blake is disheartened
but hopeful October 14, 2001
- Getting ready for the end,
savoring the now December 30, 2001
- Despite prognosis,
he's determined to see another year February 24, 2002
- 'Today is full of
possibilities' April 16, 2002
- Taking a vacation from cancer
May 19, 2002
- What he seeks:
Sympathy August 25, 2002
- A five-star caregiver
November 10, 2002
- Cat's cancer a metaphor for
Blakes' own struggle November 29, 2002 (this one is especially thought-provoking)
- Cancer patient trades tenuous
hope for a solid here and now June 15, 2003
"Patients who ask questions, elicit treatment options, express opinions,
and state preferences about treatment during office visits with physicians
have measurably better health outcomes than patients who do not. No amount
of technically excellent care will produce optimal outcomes if patients are
not actively engaged in managing diseases, particularly chronic disease."
- Sherrie Kaplan, Codirector of the Primary Care
Outcomes Research Institute, Boston MA
(quote lifted from
Mary Shomon's thyroid newsletter!)
The information provided herein should not be used for diagnosis or treatment of any medical
condition. Everything I know about medicine, I learned from watching
Oh, that hunky
I'd love to get him alone in Exam Room 2 sometime.
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