A couple of weeks ago I had a painful reminder from my salivary gland that the RAI (radioactive iodine) treatment is starting to take a toll.  Almost two years ago, I took RAI (I-131) to kill any remaining cancer cells lurking around in my thyroid tissue.  This was done a couple of weeks after my thyroidectomy.  I didn’t have any issues with my salivary glands during that time.
If it’s not one gland, it’s another.  Instead of my thyroid gland being diagnosed with cancer, now my parotid gland has been diagnosed with sialadenitis.  Oh joy!  At this point, it is hard to say if my sialadenitis of the parotid gland is a direct result of the RAI or not.  There is not too much research on the long-term effects of RAI to date.  However, I did find a case study in the JADA called Salivary Gland Injury Resulting From Exposure to Radioactive Iodine that was very informative.  According to this study, “In the majority of cases, when a patient receives therapeutic doses of 131I, the patient develops an asymmetric radiation sialadenitis. Obstructive symptomatology is to be expected. Oral dryness occurs less often and is related directly to high dosages and the passage of time. Clinicians should be aware of the condition to avoid unnecessary diagnostic and therapeutic measures.”
Back to my story…
The pain and swelling continued for several days.  I finally went to the Otolaryngologist (Ear, Nose and Throat (ENT) doctor) last week and was told to drink a lot of water, suck candies, massage the salivary gland area and put a warm compress on it. The goal is to keep the saliva flowing and wash away any blockage. I did all of those things and it got better. I went a couple of days without swelling or pain. Then this morning I had a few bites of breakfast and the pain came back with the swelling. Nooooo! Not again!! I took Advil, massaged the area and put on a warm compress. It helped. But a girls gotta eat, so by lunch time I tried again.  It didn’t go too well. I called and left a message for my ENT and am waiting to hear back. This is very frustrating. I’m trying to keep it in perspective. Things could always be worse. I’m grateful that the thyroid cancer is in remission. Since that is the reason the RAI was even done, I need to remind myself that it did work.
My life is really good! However, eating is kind of important, so I’m hoping my parotid gland gets better soon!  Until then, I will be massaging away, chain chewing gum and sucking candies, drinking lots of water and sharing my journey with all of you.
~ I’m grateful to be a ThyCa survivor ~ I’m grateful to be a ThyCa survivor ♥ ~ I’m grateful to be a ThyCa survivor ~ ♥ ~ I’m grateful to be a ThyCa survivor ~ I’m grateful to be a ThyCa survivor ~ My parotid gland still hurts when I eat from the RAI (RadioActive Iodine). I get small bits of food caught in my throat at times. My vocal chords are still a little damaged from the thyroidectomy. My fear wakes up every 6 months when I go for follow-up scans and blood work. I get hot flashes and chills now more than ever. My memory is not was it was before. So I need to remind myself, despite it all. I FOUGHT THE FIGHT. I AM A CANCER SURVIVOR and THRIVER!!!  AND FOR THAT, I AM SO GRATEFUL!!

At times I wonder if certain cancer treatments are more dangerous or harmful than cancer itself.  A couple of years ago, my cancer treatment made me radioactive for a couple of weeks to kill the remaining cancer cells.  (No, I did not glow.)  But I was isolated from friends and family for over 3 days.  They even gave me a letter to carry in case the radioactivity left in my body set off any alarms in government buildings or airports! That caused me to step back and wonder if that treatment was worth the risk.  It worked, so I guess it was.

I have friends that have gone through chemotherapy and take all kinds of medications with terrible side effects to treat cancer.  The goal is to kill the cancer, not the person.  At times, I wonder if the doctors remember that part.  It seems like the side effects from the treatments drain what little energy is left in our bodies at the time.

I’ve moved on from cancer treatment to cancer follow-up procedures.  My doctor recommended that I get Thyrogen shots and blood work to see if my levels change.  The Thyrogen stimulates the cancer producing cells.  The shots are administered two days in a row.  One shot is the left buttocks and the other shot in the right.  It is literally a pain in the @ss!  I got the first shot this morning.  Ouch!! It hurt and burned.  Now I have a headache and feel a little nauseous from the Thyrogen.  I don’t want to go back tomorrow for the second shot.  I’ve learned that part of surviving cancer is staying positive and doing things that I don’t necessarily want to do.  I will continue to fight the fight!!!

The results should be back next week.  I will do my best NOT to think about it and live my life. (Although every time I sit, my sore butt will remind me of the shots!) There is no point in worrying about it today.  I will need to remind myself of this several times a day.  If the blood work results are high enough to detect cancer, then they will move forward with treatment.  If not, then I will continue going back every six months for follow-up visits and testing.  Either way, I guess this pain in the @ss it worth it.  I am praying that the results are good.  Regardless, I will get through it and continue sharing my journey.

xoxo,

Thyro-Jenn

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am all about promoting thyroid cancer awareness month in September.  That is why I was super-excited when I found out that Dear Thyroid had a blog tour to help spread the word.  They posted the following on their site:   “During the month of September, Dear Thyroid is going on a blog tour to promote awareness for thyroid cancer. For this blog tour, we’ll be asking bloggers to write a post on their own blog that addresses some questions provided by Dear Thyroid regarding thyroid cancer and thyroid cancer awareness. On the day we are scheduled to make a “stop” at your blog, Dear Thyroid will post a brief description of your blog along with a link from our website to yours.”
September 2, 2010 is the day the link to this post that you are reading at this very moment will be featured on the Dear Thyroid site.  So pleeeeease continue to show your support by sharing this post with others and making a “virtual” difference.  (Thank you!!)  Below are the questions from Dear Thyroid and my answers.  And away we go…
  • 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!

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”

 

Dear Thyroid posted my letter to my thyroid on their site at http://dearthyroid.org/rip-my-thyroid/ and I encourage you to take a visit over to see it.  Below is the beginning of my Dear Thyroid letter…

Dear Thyroid,

It’s hard to believe that a year has gone by without you regulating my metabolism, hormones, body temperature and energy level.  You were a good gland and did the best that you could do with the hand you were dealt.  We spent over 35 years together, yet I never knew you until …(To read the rest, go to http://dearthyroid.org/rip-my-thyroid/)

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!

IMG00187

So the day has finally arrived for the iodine radiation pill.  I’m glowing with anticipation.  After 18 days of the LID (Low-Iodine Diet), my remaining thyroid tissue/cells are starving for some iodine.  It has been hard to stick to the LID, but I did it!

Before Dr. Ladenson came in, we met with his Assistant, Marge and discussed my questions.  So I cannot be within 3 feet of anyone for 3 days.  (Frown)  I can have visitors over, but they just have to stay at least 3 feet away.  Well that is good to know!  Marge went on to let me know that I might set off some radiactive detector alarms. What? No way!  She gave me a letter that I need to carry with me for the next month just in case an alarm goes off.  These alarms are in airports, government buildings and other buildings.  Check out the JH Radiation Letter for the interesting details.

 And now for the big moment.  I was in the room with my Mom and in walks Dr. Ladenson and his 5 interns.  He explained that once I took the pill with the iodine radiation, it would make me radioactive for a few days.  The radiation will kill any remaining thyroid cancer cells and reduce the remaining layer of thyroid tissue.  It will go through my digestive system and come out in my urine, saliva and persperation.  (That is why I’m supposed to flush twice and put the toilet seat down, which made me think that some men might have a tough time remembering to put the seat down.)The actual thyroid area will be radioactive for a few months, but it will not be harmful. (Um, okay?)  Some of the radiactive iodine will go into my saliva glands which may cause soreness over the next few days, so sucking on hard candies is recommended to keep the saliva flowing. (Very interesting – huh.)

The room got very quiet.  Dr. Ladenson looked at me and asked, “Are you ready?”  I said “Yes I am.”  A few silent seconds went by as the intern was getting the pill out of the container.  Yes, a container that was within a container.  This is radioactive stuff and so that one little capsule of radioactive iodine was housed in layers of containers.  See the pic below…

IMG00189

I then said, “It is so quiet in here.  We need some music for this.” Within a half a second my Mom’s (bless her soul) cell phone started ringing in the form of a song.  Perfect timing Mom!  So she jumped up and left the roon to answer the call. 

The intern brought over the capsule with a cup of water and gave it to me.  Everyone watched as I took the capsule.  Down it goes!  Then my Mom came back in.  She missed the big moment.  And just like that I became radioactive.  Let the 3 feet for 3 days begin.

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