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!!

After lots of prayers to the insurance coverage gods, I got my answer.  Melanie from BioScrip pharmacy called to let me know that my insurance (United Healthcare) WILL cover the thyrogen shots at 100% once my $250 deductible is met.  What? What? YAYYYY!!! WOOHOOOO!! Paying $250 is much better than having to pay $2,400 which is what it would have cost for two thyrogen shots without insurance coverage.  What a relief!

I started asking Melanie some questions so I could update my blog readers.  She was more than happy to give me some of the “inside scoop” and I am happy to share it with all of you.  I hope it saves many other people thousands of dollars and many phone calls to the insurance company.  (Please read my last post Thyrogen Shots and Insurance Coverage – Not? for information about thyrogen and to to hear about my first round of calls with the pharmacy and insurance company.)  My conversation with Melanie from BioScrip went a little bit like this:

Me: Is BioScrip pharmacy part of ThyrogenOne?

Melanie:  We are one of the approved pharmaceutical companies that supplies the doctors with thyrogen.

Me: How did you manage to get it covered by my insurance company?  Last week I was told it was not covered.

Melanie:  I went through the medical side of your insurance coverage.  It is not covered under your prescription plan.  So when your local pharmacy called it into the prescription side of United Healthcare, the coverage was denied.   It has to be called in and billed through the medical side.

Me: Ohhhhh. That is good information Melanie.  Thank you!  It really upsets me to think about all of the people who are trying to beat cancer or stay in remission and are told that the thyrogen shots are not covered by insurance simply because it was put through on the prescription side instead of the medical side.  It is tiring enough to live with cancer and go through all of the time-consuming, energy draining things we need to do to fight cancer.  If more people knew about ways to get their treatment covered by their insurance company, then it would make a positive difference.  I’m gonna blog about this!

Melanie:  I understand.  That is a good point.  I hope it helps other people when you blog about it.

Me: I hope so to.  I really appreciate you taking the time to talk with me.

There you have it.  That is how my conversation went with Melanie from BioScrip.  She was very knowledgeable and took time to explain things to me.  But I also asked the questions.  It is so important to speak up.  I didn’t go to school and take Cancer 101 classes.  This is not something that I had planned for my future a couple of years ago. There is a lot to learn and it all starts the moment we are diagnosed with having cancer.  So learn all that you can.  Make sure you get your information from reliable resources.  Ask all the questions you want to.  If something is not covered by insurance, fight for it.  This is your body, your health and your life.

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/)

Almost a year ago, I was told that I had papillary thyroid cancer.  I will never forget that day.  A few months later I had my thyroid removed.  A couple months after that I had to prepare for RAI treatment by going on LID for 18 days.  After a couple months I went back and had bloodwork which brought back good news and the cancer was gone!  So now it’s a few weeks later and I realize that I’m just beginning to process the experience.  It’s too much to wrap my head around at once.  Today for no reason the thought popped into my mind, “I had cancer!”  It brought up a lot of fear and then I felt my heart start to beat a little faster.  I took a deep breath in…1-2-3-4-5…and out…1-2-3-4-5.  Then I thought, “I’m a cancer survivor!” I felt a calmness wash over me.  All is well in my world.  Grateful to be alive, healthy and a survivor today. 

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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!

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