January 12, 2011
September 1, 2010
- What kind of thyroid cancer were you diagnosed with? How many years have you been a survivor?
I was diagnosed with Papillary Thyroid Cancer in October 2008. I believe that I became a cancer survivor the moment after I was given the diagnosis. That is when I started my fight. Some consider themselves cancer survivors once they become cancer-free, which for me was May 2009. After going through this battle, I see anyone diagnosed with cancer as an immediate survivor.
- September is thyroid cancer awareness month. What does that mean to you? Why do you think awareness is important? How do you spread awareness?
To me, thyroid cancer awareness month means joining forces to spread the word about prevention, early detection and the facts about thyroid cancer. One of the reasons I started my Thyroid Cancer Survivor blog was to spread awareness about thyroid cancer and to share my journey as a cancer survivor with others. Awareness is important because it gives people a better chance to check their neck and find thyroid cancer earlier.
- Many thyroid cancer patients have been told, “If you have to get cancer, thyroid cancer is the one to get.” What do you think of that statement? When you’re told this, how do you respond?
When my doctor told me that I had papillary thyroid cancer, I was shocked. I remember him telling me that if I had the option to pick which cancer I would want, I would want thyroid cancer. At the time, it made me feel better. I didn’t know too much about thyroid cancer back then. I guess my doctor was trying to make me feel better and take some of the fear away. Now I know that cancer is cancer. One is not better or worse. No type of cancer should be minimized. I’ve also heard people refer to thyroid cancer as the little “c”. It’s not worth getting upset about. That only feeds those cancer cells. I usually smile and let them know cancer does not come in a “lite” version.
- Dear Thyroid is constantly working to dispel the myth that thyroid cancer is the good cancer or the easy cancer. What other myth would you like to dispel regarding thyroid cancer?
Some of us get to go through the radioactive iodine treatment, people asked me if I glowed in the dark. It was tempting to say yes, but the truth you don’t glow in the dark. That is a myth!
Another myth is that once the cancer treatment is over and you get a clean scan, you can put it behind you. Thyroid cancer survivors have to go back every six months the first few YEARS for scans and blood work. There is a 30% recurrence rate, so it is very important to stay on top of it. Thyroid cancer is never over. That is the myth. It is a lifelong battle because those sneaky thyroid cancer cells are always trying to multiply.
- What one thing would you tell the world about thyroid cancer?
This cancer journey has given me a new perspective and appreciation for life. I am so grateful to be a survivor.
- What advice would you give to a newly diagnosed thyroid cancer patient?
You are not alone. You will get through it. Learn all that you can about it (Tips for ThyCa Newbies and ThyCa is a good place to start). Be an advocate for your health. You are responsible for your health and to speak up. Never be afraid to ask the doctor a question. Talk about how you are feeling. Find people who have gone through it. Use it as an excuse to follow a dream and do something you have always wanted to do!
Dear Thyroid is a thyroid support community and literary brand. Our goal is to connect patients with each other, to create awareness for thyroid diseases and cancers, and to give all thyroid patients a voice. We come together as a united front to invoke change on behalf of thyroid patients worldwide. Thyroid patients are invited to submit letters to their thyroids, thyroid rants and raves, and other literary creations. Help us to create awareness for thyroid diseases and cancers by wearing your disease on your sleeve and by requesting one of our free awareness bands. Visit DearThyroid.org to learn more!
August 29, 2010
Summer is almost over. (frown) The back to school bug is in the air. September is just around the corner. You know what that means? Yep. You got it. Thyroid Cancer Awareness month is almost here. So I’m taking a moment to be proactive and get this virtual pep rally going!
Let me start by giving you some of the history behind Thyroid Cancer Awareness month. According to the Thyroid Cancer Survivors’ Association (ThyCa), “Thyroid Cancer Awareness Month is a worldwide observance, sponsored and initiated by ThyCa: Thyroid Cancer Survivors’ Association. It began in 2000, as a week in September. In 2003, it expanded to the whole month of September…Thyroid Cancer Awareness Month promotes thyroid cancer awareness for early detection, as well as care based on expert standards, and increased research to achieve cures for all thyroid cancer. People and organizations in 55 countries around the world take part.”
As a thyroid cancer survivor, I am on a mission to spread awareness and do my part to help others. This blog gets the word out about thyroid cancer, cancer survivorship and more. Are you playing a part to spread awareness? If you need some tips, take a look at ThyCa’s 10 Tips on How to Help.
March 22, 2010
One of my goals the past few months has been to write a “Dear Thyroid” letter and submit it to the Dear Thyroid site. I finally wrote the letter!! Yay!! I’m so excited for you to read it. I found it quite therapeutic to write.
I posted my Dear Thyroid letter called “RIP my Thyroid, August 1973 – January 2009” on my blog this week, but I had to take it down. Why? Well after posting it on my blog, I found out that Dear Thyroid will only publish original content. (Ok, I get it. Rules are rules!) I do admit, I did not read all the requirements set by Dear Thyroid before submitting my letter. So I have learned my lesson :-)
I will post the link to my letter on the Dear Thyroid site as soon as they post it. Stay tuned for details…
3/10/10 UPDATE : Dear Thyroid still has not posted my Dear Thyroid post so I might post the letter on my blog after all. Stay tuned!
March 16, 2010
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We would like to thank the following people for their generous donations to our cause: Irv Hamet, Diane Hamet, Ian Baumel, Ivan Hurwitz and Jody Clelland Richards.
I am very pleased to announce that Darren Johnson has volunteered to head up our bake sale the day of the relay and he will be coordinating the donated baked goods. Please note: we are requiring each team member to donate a minimum of one item for the bake sale. So please contact Darren at email@example.com.
Next, I would like to thank Jennifer Rudd Monath for volunteering to be in charge of campsite decorations. Her email address is firstname.lastname@example.org.
We still need one person to be in charge of coordinating food and beverages and another person to be in charge of coordinating campsite equipments (tents, sleeping bags, etc). Please contact me a email@example.com if you want to learn more or volunteer for these opportunities.
And don’t forget to participate in our online discussion board on facebook. We’re currently asking every team member to give us in one sentence why you relay (and “Chris guilted me into it” is not a legitimate answer).
As always, thanks to our supporters and our team members for their tireless fundraising efforts.
Until next week,
Wings of Hope
March 7, 2010
Life rarely goes according to plan. If you have recently been
diagnosed with thyroid cancer, and if you are like most of us,
you will find yourself flooded by a range of emotions including
fear, disbelief and anger.
The following steps are suggested to help focus your thoughts
and actions, in order to make the best informed decisions
for yourself in the least stressful way.
1) FIND A SPECIALIST
If you don’t already have a thyroid cancer specialist, ask your family
doctor, or members of this group for referrals (most thyroid cancer
patients are monitored by endocrinologists rather than oncologists).
While some people don’t see this doctor until after their surgery,
it’s helpful to meet with them beforehand, and let him/her coordinate
surgery, treatment, etc. (see “Finding a Doctor”)
2) LEARN ALL YOU CAN ABOUT YOUR DISEASE
(BUT NOT NECESSARILY ALL AT ONE TIME)
Knowledge is your greatest asset when facing down fear and when
making decisions about your treatment. Obviously, by joining this
group, you’ve made a huge step in that direction.
While it’s helpful to have a sense of the bigger picture, don’t try to
learn everything at once. Focus on each step of the treatment as
you’re going through it, and then move on to the next one.
In a few months, you’ll be an expert.
3) MAINTAIN A THYCA JOURNAL
I can’t emphasize this one enough.
While you are going through this journey, it may seem that you
couldn’t possibly forget anything that is happening.
Trust me – unless you have an exceptionally powerful memory
(and even if you do), you will forget details.
In addition to being a wonderful outlet, a journal is an excellent
reference for your unique thyca experience.
When things are looking bad, it’s nice to be able to see that you
have felt bad before and come out of it. When you are feeling great,
it’s great to put that in writing, too.
This doesn’t have to be anything formal, but will be an invaluable tool
as you make your way through your treatments and follow up. You
may want to keep a separate small notebook intended for doctors’
visits (Cynthia: ” … it is essential to have a notebook with notes
from all your doctor’s visits in it. My notebook is small enough that
I can fit it in my purse (although my purse isn’t small). This gives me
the ability to write questions down at any time during the day, no
matter where I am.”)
Keep track of all the doctors you have seen, questions you want to
ask them, as well as their responses and instructions.
Keep track of your favorite coping tricks, so you can refer to them
again. (As a thyca friend says, if you don’t do this, you’ll have to
ask your friends what the heck you ate while on the LID* and that
can be embarrassing ….. :- )
*LID – low iodine diet
Some things to keep in your journal:
– doctors’ names & phone numbers (most handy if it’s on the first
page or inside cover)
– questions for the doctors, with room for their answers
– very brief summary of each appointment (including date)
– favorite resources (internet links, books, articles, etc. – either
your own, or recommendations from others)
– medications, dosages, conditions under which they are taken
(empty stomach, etc.), and how you feel with that protocol
– LID menus & favorite recipes
– medical reports received (this should include all of them, including
– tips you want to try when you reach another stage of your treatment
– records of your treatment, including dates and number of millicuries
of each RAI, TSH levels and thyroglobulin (Tg) levels
– on one page, a timeline of appointments, scans, tests, treatments
– while you are hospitalized, list doctors and staff members who came
in, and what they did to/for you
NOTE: Your journal can also be a place for your family and friends
to jot down their thoughts and well wishes. Particularly while you’re
hospitalized, they may also be able to write down things you may be
too out of it to notice.
4) ALWAYS GET COPIES OF ALL YOUR REPORTS
This includes blood tests, surgical reports, scans, etc. You probably
won’t understand everything contained in the reports when you first
get them, but you will in the future, and having your reports is an
important part of understanding your disease and your treatment.
(It also implies to your doctors that you are serious about your care
and they’d better be too!)
You can ask your doctor’s office staff to give you copies of lab
reports, radiology & pathology reports and even the final summaries
from your surgeries. Many doctors recommend getting copies of films,
5) PARTICIPATE IN YOUR TREATMENT
It’s important to consider yourself a partner in your medical care.
Learn about your diagnosis, the treatment and follow up protocols.
Be prepared to ask questions of your doctors.
If you are given instructions that don’t make sense to you, get an
explanation. If you think your doctors’ instructions contradict
generally accepted protocol, and you can’t get a reasonable explanation
for this variation, it may be time to consider finding a new doctor, or
at least a second opinion.
6) GET SUPPORT, GIVE SUPPORT
Support comes in many forms (this group, local support groups, church
or work acquaintances, friends & family). Remember that by being part
of a thyca support group, you are not only getting invaluable
information and support from people who have been there, you are also
giving invaluable support to others who need your perspective. This is
a very healing thing in itself; it will come back to you in spades.
If you’re not getting the support you need at home, remember that you
may have to ask for it. Friends and family members may want to help,
but don’t know want to do or say. They are scared, too, and may need
reassurance that you will be okay, that you really are getting the best
of care, and that what you’re going through is perfectly normal. (see
“Asking for Help” and “Talking to Children about Your Cancer” )
7) DON’T GET CAUGHT UP WITH PHRASES SUCH AS “THE GOOD CANCER”
Most of us have heard some variation of that phrase, which is clearly
intended to be reassuring, but which rarely is. We all know there’s
no such thing as a good cancer, although the truth is that when
compared with other cancers, the survival statistics and treatment are,
for the most part, better than most.
And of course, we know it’s the cancer with the best support group :-)
Unfortunately, some people find that phrases such as “the good cancer”
diminish their experience to the point that they feel they don’t even
have cancer, or that they’re not entitled to participate in such
empowering experiences such as cancer walks. Or, some people feel
guilty for feeling bad, because, after all, they don’t even really have
cancer. Please don’t let this happen to you.
Think of your diagnosis as a temporary detour, not a change of
direction, and continue to plan your future as if this detour hadn’t
occurred. More than likely, you’ll be forever changed by your cancer
diagnosis and treatment, but difficult as it may be to believe, chances
are it will ultimately be a positive change, and believing that you WILL
recover (and remembering that you had a life with goals before your
diagnosis) will contribute greatly to your recovery and your spirit.
Don’t allow your cancer to become the sum total of your life, but
only a part of it. Always fill your life with other diversions,
however mundane (or, hopefully not).
8) MAINTAIN YOUR SENSE OF HUMOR
It’s not always easy, but if you have any doubt that the worst events
make the the best stories later on, see the humor index for tales of
members’ hypo blunders and other true confessions. If you need
inspiration in seeing the lighter side, consult the list of 100 funniest
movies, and see how many you can check off.
9) NEVER, NEVER, NEVER, NEVER GIVE UP
As you read letters on this, remember that we are all in
different stages of our thyca journeys, and that we all take different
paths. Some of us have a single surgery and RAI treatment, and
are free of cancer forever, while others require more time, and
sometimes repeated treatments.
Sooner or later, however, most of us will have the joy of “clean” scans
and blood levels, indicating that we are, indeed, cancer free. Look
forward to these moments, and enjoy every single one of them, but
remember that vigilance is paramount. Thyroid cancer has been known
to return even 20 years after initial diagnosis, so don’t ever let down
OTOH, also remember that there are many thousands of people who
have had thyroid cancer, who consider themselves to be fully cured,
and who are living full and joyous lives. Their follow-up thyca tests
are scheduled along with – and have no more import than – all of their
other regular medical exams.
10) THE FIRST YEAR IS THE HARDEST
No matter how low you may be feeling at any given moment,
remember that there is light at the end of the tunnel, that tomorrow
will be a better day. There are people who love you; there are those
of us who understand what you are going through, and who are there
for you when you need a shoulder (in a perfect world all those traits
will be in one person, but that’s why we have many persons to help
us through an imperfect world).
It may be hard to imagine now, but there will come a day when you’ll
forget all about the scar on your neck and when you’ll need to mark
your calendar to remember to schedule your follow-up tests.
Until that time, be prepared to be patient. Especially in the first
year, it seems that everything takes too long to happen. You’ll probably
feel like you’re always waiting for something – test results to be
completed, blood levels to be where they need to be, medication
dosages to be finally stabilized.
And when all that finally happens, you’ll be waiting to plan your first
series of follow-up tests. Nothing moves fast enough in the beginning.
Through all this, remember to find time to live your life.
Pay for 10, get this extra!
11) GET TO KNOW YOUR PILLS
Whenever you have a prescription renewal filled, examine
the pills to be sure you were given the correct ones.
Mistakes happen, and you never know when they might
happen at your pharmacy.
*I did not write this post. It is from http://www.bird-on-a-line.com/2009/01/thyroid-cancer-tips.html “TOP 10 TIPS FOR THYCA NEWBIES”
February 23, 2010
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2/15/10 – 2/21/10
The heat is on! There are only 54 days left until the Relay for Life at Johns Hopkins
Again, if you haven’t all ready, I encourage our team members to log in to their participant centers on the ACS website and start updating their personal pages for donations. There is also an application on facebook that will help you with meeting your $100 personal goals. Both of these tools will provide donators with official receipts from the American Cancer Society.
We have a lot of exciting things happening the first week of March!
Thursday, March 4th from 6 a.m. to 1 p.m., we are holding our own bake sale at Johns Hopkins Outpatient Center, 601 N Caroline Street, Baltimore, MD. We need food donations and volunteers to help us run our booth. You do not have to be a team member to help us, our supporters are just as important as our relayers. Please contact Angel (firstname.lastname@example.org) or myself (email@example.com) if you want to help.
Friday, March 5th from 1 p.m. to 4 p.m., there is a relay wide fundraiser at Johns Hopkins University. We need volunteers and fundraising ideas. If you are interested or want more information, please contact me at firstname.lastname@example.org.
Saturday, March 6th at 11:30 a.m. we have a team meeting at M&S Grill, 201 E Pratt Street, Baltimore, MD. This is an open meeting, so if you have joined team Wings of Hope yet please join us.
We are currently holding two online fundraisers: The first contest is all thanks to our wonderful friends and supporters at Dear Thyroid. We are encouraging the Dear Thyroid community to form fundraising teams to help us in our goal for the American Cancer Society. The first team to raise $3,000 wins TEN free “Invisible No More” bracelets; the first team to raise $1,500.00 wins FIVE free bracelets; the first team to raise $750.00 wins THREE free bracelets; and the first team to raise $500.00 wins TWO free bracelets. For more information, contact me or visit us at http://main.acsevents.org/goto/wings2010. The contest ends March 16th!
We would like to welcome our newest team member: Melissa Lorenzo. Welcome to the team!
Until next week,
Wings of Hope