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
blood tests)
– 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,
too.

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
your guard.

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”

The following update was written by Chris Prestano, Captain of the Wings of Hope Team…

We are very pleased to announce that only after ONE week, Wings of Hope is Number 1 out of 71 teams for the most money raised for the American Cancer Society’s Relay for Life Johns Hopkins University on April 16, 2010. And we couldn’t have done it without you! We would like to give special thanks to the following people:

• Supporters Robert Bruce, Robert Hansen, Shawn Jirik, Kim Spisler, Kim Eisenberg, and Lisa Redmond

• Thyroid Cancer Survivor Carol DiFelice

• Thysister Robyn Davis Hahn

• Thyrella Lori A. Callahan

• Thyroid Cancer Family Member Jeane Kidwell

In our first week, we have grown our relay team to four members: • Co-Captain Chris Prestano • Co-Captain Jennifer Bridge • Thyroid Cancer Survivor Angel McMellin • Supporter Jen Engesser

A very special thanks goes out to Dear Thyroid for joining our cause. The three thyroid cancer survivors on our team will be proudly wearing Dear Thyroid t-shirts stating that we are “Kicking Thyroid Cancer’s Ass” during the relay. In addition to donating our attire, Dear Thyroid has been a tremendous help by promoting our cause on their website: www.dearthyroid.com. Thank you, ladies! Your support has been tremendous momentum for us.

We would also like to thank ThyCa (Thyroid Cancer Survivors’ Association, Inc.), a national non-profit 501(c)(3) organization dedicated to the support, education and communication for thyroid cancer survivors, families and friends. They have donated brochures and other information for us to distribute at the event.

While I was on my latest medical trip to Baltimore, Co-Captain Jennifer Bridge has been a very busy lady. In addition to recruiting team members, getting donations and keeping up with her thyroid cancer survivor’s blog (https://thyroidcancersurvivor.wordpress.com); she has been working on our team website (http://main.acsevents.org/goto/wings2010), our team facebook page (http://www.facebook.com/group.php?gid=186281329422&ref=nf), and attended her first team captains meeting. This lady seriously rocks!

 This is a really kick ass start in our fight against cancer! Our second week is all ready off to a great start with new team members joining and fundraising plans in the works.

On another note, please keep the following people in your thoughts and prayers this week: Team member Angel McMellin. She is currently prepping for radioactive iodine treatment and living with the joys of the Low Iodine Diet (LID) and being hypothyroid. We pray for to find continued strength and energy in the days ahead. Victoria. An older lady I met this weekend who has a 3 cm tumor on her thyroid. Even though her fine needle aspiration (FNA) came back clean, she will be having a partial thyroidectomy on January 26 – just four days after the birth of her first grandchild.

This is why we fight back. These are the reasons that we relay!

Until next week…

Wings of Hope

The iodine radiation treatment worked.  Oh yeah!  I got the follow up results from my bloodwork and thyroid ultrasound today.  It looks good and the blood levels were close to perfect.  Some extra unexpected good news was I lost about 8 pounds since March. I could tell by how my clothes fit, but the confirmation was nice to hear.

So if you’re about to go on the LID (Low Iodine Diet) to prepare for the iodine radiation, I’m cancer-free proof that it works.  Stay positive, replace fear with faith and keep walking through that storm.  There is lots of light on the other side.  I know because I’m taking it all in today!

2006052501_road_to_heaven

After 18 days on the low-iodine diet, my taste buds were sure looking forward to the freedom of tasting normal food again.  I had been fantasizing about sushi for days and that was my first post-LID meal. 

sushi

Little did I know that my taste buds were affected by the radioactive iodine.  Loss of taste? Are you kidding me?  The sushi was good, but not great.  The low iodine diet was already bland enough, but at least I could taste the food then.  What is going on now?

As the days went on, I noticed my sense of taste became worse!  I had the yummy taste of metail in my mouth.  Mmmmm. Mmmmm.  As a bonus, it felt like had burned my tongue.  But the loss of taste was mostly on the front part of my tongue and the soreness was on the back of my tongue.  I had read that this was a possible side effect from the RAI.

So now I’m off the LID.  I can have my cake now and eat it to.  I just can’t really taste it!

butterfly_003utterflyau

There is an invisible three foot barrier around me for days to come.  It is to keep others out of harm’s way from the radiation.  So here I am at home thinking about my life.  So many people have told me write a book over the years.  I plan to one day. 

So many storms have come and gone, but I never gave up.  I’m aware of my purpose and will continue to welcome the experiences good and bad to come my way.  Because there are lessons in each one to be learned. 

As I sit and think about my life;  the pain, the joy, the love, the loss, I can feel my eyes start to well up with tears.  Then I remember to be careful where they fall.  My tears are radioactive today.  Some might think that they are tears of saddness and a few years ago they would have been.  But these days I cry tears of joy and gratitude.  These tears are from being overwhelmed with all that has touched my spirit.  For I am alive.  I did it again.  I surrendered to the fight.  I’m a cancer survivor!

LID diet

In order to prepare my body for the radioactive iodine (RAI) treatment and scan, I had to go on a low-iodine diet (LID). I must admit that I was not too thrilled to find out that I was going to have to greatly limit my diet for over 2 weeks by going on a low-iodine diet (LID).  But in reality that is such a short amount of time when I compare it to the remaining wonderful years of my life.  Plus I’m doing it so that those cancer cells will be zapped away once and for all! 

So I got fired up, made an adjustment to my attitude and started searching online. I had to be on the LID for 18 days.  That is 54 meals and lots of snacks…Yikes!  One low iodine diet food item at a time.  To my surprise, it was not too easy to find things to eat at first.  Sure ThyCa lists recipes on their site, but I didn’t want to have to spend hours in the kitchen preparing dozens of meals. 

In an effort to save YOU time and worry, I have put together some lists.

Food products with no or low-iodine that I used:

  • Condiments: Kosher salt, Pepper, Mrs. Dash, Heinz No Salt Ketchup, Thyca red wine vinaigrette
  • Trader Joes No Salt Wheat Bread
  • Trader Joes No Salt Corn Tortilla Chips (surprisingly good)
  • Yehuda Matzos (Jewish unleavened flat bread)
  • Trader Joes Steal Cut Oatmeal – I added blueberries and sweetner for taste
  • Trader Joes No Salt Peanut Butter
Fruits and Veggies:  There are so many fruits and vegetables to pick from in April/May, so that made things a bit easier for me:).   However, with so many to select from, it got a bit overwhelming.  Below are some ideas for snacks or sides that I used.  Hopefully some will work for you!
  • Mashed Butternut Squash – Cut a butternut squash into cubes. Boil a pot of water with a bit of Kosher salt.  Put the squash into boiling water and cook for about 15 minutes.  Drain and put the squash into a bowl.  Add honey, cinnamon and sugar (or sweetner) and mash away!  It is so good and goes great as a side dish for lunch or dinner.
  • Celery and Trader Joe’s no salt peanut butter (Good snack)
  • Snow Pea Pods (Enjoyable, crunchy afternoon snack)
  • Baked apples with cinnamon
  • Frozen Grapes (A sweet, cold treat)
  • Fruit salad – grapes, pineapple, blueberries, strawberries & any other fruit you desire
  • Homemade Guacamole (Avocado, finely chopped onion, chopped tomato, lime, kosher salt, cilantro) with non salt tortilla chips
Additional Food products with no or low-iodine that I read about, but did not get a chance to use:
  • Nature’s Path called Manna Bread in a range of flavors
  • Manischewitz unsalted potato chips
  • Newman’s Own Unsalted Organic Microwave Popcorn
  • Terra Unsalted Hickory BBQ Potato Chips
  • Mr. Spice Honey BBQ Sauce
  • Mr. Spice Thai Peanut Sauce
  • GottaLuvIT Raspberry Balsamic Vinaigrette
  • Gotta Luv It Sweet & Tangy Italian Dressing
  • Health Valley No Salt Added Split Pea Soup
  • Trader Joe’s Low Salt Items – Low salt is NOT low iodine, however I found this to be very helpful.  As it turns out, many of the products on their list were low iodine.  Just read the ingredients carefully and you’ll see what I mean.

Helpful Low-Iodine Cookbooks:

Post-LID Suggestion:

I suggest putting together a schedule of LID meals for the week.  I did NOT do this the first week and felt totally overwhelmed.  Planning in advance made things much easier.  I made a list of LID meals for the second week and it made a world of difference. 

If you are about to embark on the low iodine diet journey, I wish you the best.  I reminded myself on a regular basis why I was on the LID and it always helped to put things in perspective.  Changing my diet for a few weeks to beat cancer is a small sacrifice for the big gift of remission. 

Sending you hope, strength, patience, positivity and prayers…

The Low-Iodine Diet (LID) is a little easier to follow if you know what ingredients to avoid on the food labels.  Iodine is in so many things that it is really hard to go food shopping without some good information.  It is not as simple as looking for the word iodized salt (althought that is one of them).  So here is a list of some food ingredient items to AVOID during the LID time.

  • Iodized Salt
  • Sea Salt
  • Iodine
  • Iodate
  • Iodide
  • Alginate
  • Algi
  • Agar
  • Carrageenan
  • Nori
  • Red dye #3