~ 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!!
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1/29/10

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!

3/22/10 UPDATE TO UPDATE: Dear Thyroid posted my Dear Thyroid letter today!!! WooHoo!! Please take a looksy at http://dearthyroid.org/rip-my-thyroid/and share your comments.  Thank you in advance 🙂

Thanks!

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/)

Last week I went for my six month follow-up thyroid ultrasound.  I was pleasantly surprised to be greeted by a very nice person at the front desk who treated me like a person with feelings instead of a person ordering cheese at the deli. (Next in line!)  Even Marie, the Ultrasound Technician was compassionate and relaxed.  She really took her time with me during the ultrasound.

The last time I had the ultrasound, they found two lymph nodes that were swollen.  My Endo said that we would keep an eye on it during the next follow-up ultrasound.  So this time when I was laying on the table with the warm gel on my neck and the ultrasound wand sliding around, my nerves were shot. 

Marie told me that there were two lymph nodes sticking out on the left side.  They were in the same area as the ones that were swollen six months ago.  Oh No!  She moved around and hovered the wand over the other side of my neck and found two more that were sticking out.  I felt sick and a wave of fear rushed over me.  Marie said “off record” that the lymph nodes looked like regular ones to her.  Well that did not make me feel better.  What Marie didn’t know is that I found out after my thyroidectomy that the cancer had spread to five  of the seven lymph nodes they removed during the surgery.

When I left the appointment I decided not to let the potential upsetting news get me down.  I walked back out as a thyroid cancer survivor!  I have not heard any good news or bad news yet.  I’m waiting for the results.  My appointment to go over the ultrasound results and blood work is not until February 2.  I can’t remember if my doctor called me prior to our appointment last time or not. 

Waiting for the results is starting to take a toll on me.  I am so good at focusing on gratitude and holding on to the fact that everything is going to be alright.  I consider myself to be a positive person with a wonderful support network that are here for me through it all.  But this waiting for results thing is really difficult.

I’ve been really emotional the past couple of days.  I feel really sensitive to everything and on edge.  The fear of what might be lurking in those lymph nodes is in the back of my mind.  I’m scared.  I hope and pray that the cancer has not come back to more lymph nodes.  Regardless, I can’t do anything about it now except write this post and know that the other people reading this understand.  And in turn it helps me to not feel so alone.

From the start, I’ve had a great group of doctors treating me during the pre-cancer diagnosis, cancer treatment and post-cancer visits.  Looking back, I realize that living in Baltimore and being referred to the Endocrine team at the Johns Hopkins University School of Medicine was a BIG blessing.  After all, I had so many questions and wanted as much information as I could get from the experts at JHU. 

Since I had a thyroidectomy, I needed to take a thyroid hormone medication to replace my thyroid gland function.  So one of the questions I had was “What are the patient guidelines for thyroid hormone therapy?”  I have heard and read about all kinds of “rules” when it comes to guidelines patients are supposed to follow.  I came across the guidelines that were sent to me from JHU the other day.  Warning:  Before making any changes to your thyroid hormone therapy, always check with your doctor.  I am not a medical professional (I’m just a thyroid cancer survivor trying to help others by sharing my experience.)  The guidelines below will hopefully bring you some awareness and serve as a “conversation piece” for you to have with your doctor.

  •  Take your medication consistently at the same time, ideally in the morning OR at bedtime on an empty stomach. If a dose is missed you can make it up at a later time or the next day.
  •  Separate your thyroid hormone by 4 hours from iron containing multi-vitamins, iron tablets, calcium supplements, antacids, and soy products.
  •     Thyroid medication doses vary from 0.025 mg to 0.3 mg tablets. Your medication dose is embossed on the color-coded tablet. Your doctor will select a dose appropriate for your situation.
  •  Take the same brand of thyroid hormone regularly, since all preparations are not the same. Generic forms of thyroid hormone are not recommended.  If you switch to another preparation, a blood test should be done in 4-6 weeks to confirm the adequacy of your new medication.
  • Sometimes it is necessary to “fine tune” a dosing schedule by adding or subtracting a weekly tablet.
  • There are other medications that may affect your requirements for thyroid hormone. Notify your doctor if you start or stop the following medications: estrogen replacement (HRT), oral contraceptives, cholestyramine (Questran®) , cholestipol (Colestid®) , aluminum hydroxide gel (Amphogel®), sucralfate (Carafate®), phenytoin (Dilantin®), carbemazapine (Tegretol®), phenobarbital, valproic acid (Depakene®), rifampin (Rifadin®), raloxafene (Evista®), sertraline (Zoloft®), amiodarone (Cordarone®) .
  • Thyroid hormone is safe to take during pregnancy. If you become pregnant while taking thyroid hormone, notify your doctor immediately. It is important to monitor your blood work frequently during pregnancy since the dose may need to be increased.  A TSH (thyroid stimulating hormone) blood test will confirm if you are on the correct dose of medication. It is usually done 4-6 weeks after thyroxine is begun or after your dose of medication is changed.  You do not have to be fasting for this test and it maybe done anytime of the day. You should take your medication the day of this testing.

Side effects of thyroid hormone are usually related to an incorrect dose. Your doctor has selected this strength based on your weight, diagnosis, and goal of treatment. Frequent dose adjustments are not regularly required. 

Possible symptoms of thyroid hormone excess (too high a dose of medication) include:

  • Palpitations (rapid heart beat)
  • Heat intolerance
  • Hand tremors
  • Anxiety
  • Insomnia
  • Fatigue
  • Difficulty concentrating
  • Frequent stools, diarrhea
  • Unexplained weight loss 

Possible symptoms of thyroid hormone deficiency (too low a dose of medication) include:

  • Fatigue
  • Cold intolerance
  • Constipation
  • Dry skin
  • Weight gain
  • Coarse skin
  • Impaired memory
  • Depression

If possible, I’d like to keep my “thyroid cancer survivor” status for the rest of my life.  That’s what I was yesterday and again today and hopefully tomorrow as well.  But to stay on top of those sneaky thyroid cancer cells, my Endo Dr. recommended a thyroid ultrasound and blood work tests twice a year for a very long time to come.  Oh Joy…NOT!

I just made my “thyroid-less” ultrasound appointment for next week.  (Since I had a total thyroidectomy last January, I now refer to it as a “thyroid-less” ultrasound.)  This will be my second time doing the six month check of my neck routine.  The first time (post-cancer) I had the ultrasound done, the technician seemed to hover over the upper left side of my neck. She smoothly glided the ultrasound wand around the gel over my neck without any cause for suspicion.  Then she got to that one spot on the left and I felt my stomach start to form imaginary knots.  It’s one of the worst feelings in the world…overwhelming fear!

The results did show some swollen lymph nodes which usually happen if you’re getting sick.  Normally there is no cause for concern, but since I had cancer, my Endo Dr. wants to see what the results show next time.  I guess that is supposed to make me feel better?  So almost six months have gone by and I have only thought about the thyroid ultrasound a handful of times.  But the occurence in the number of thoughts dramatically increased after I made that ultrasound appointment for next week.  The overwhelming flood of thoughts and feelings are back! 

At times, being a cancer survivor is like being a passenger (or hostage) on a ship sailing along the sea of the unknown.  I’m not in control of where it will go.  At times, there are lots of storms out at sea.  Then without warning, the ship sails into peaceful, calm waters.  I found myself starting to feel a little sea-sick thinking about the upcoming ultrasound.

It starts with the fear-based thoughts.  “Is there going to be a swollen lymph node on the left side of my neck again?”  “I don’t want to go through this again.”  “What if they find another nodule in my neck?”  “I’m gonna have to have surgery again.”  “I feel so anxious.”  “I can’t stop thinking about it.”  “I know the cancer is back.” “I’m going to have to miss more time from work.” “People are probably so tired of hearing me talk about it.”

Then come the faith-based thoughts.  “Everything is fine in this moment.”  “My Higher Power is right here with me.”  “I am taking care of myself by getting the ultrasound.”  “Everything is fine.”  “I’m a survivor!”  “I’m going to keep things in perspective.”  “What’s the point of worrying?”  “I am focusing on the good thoughts and allow the negative ones to melt away.”  “I have so many friends and family that love and support me.”  “I am so grateful to be alive today.”  “I’m going to live each moment to the fullest!”

So back and forth my thoughts go over the course of the day.  And as I write about it, I feel a calmness coming over me.  There’s a quiet voice that let’s me know once again that it will work out the way it works out.  Besides, it will all be done by this time next week.  Well, at least done until the next six months go by. 🙂