~ 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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“Cancer comes into a life and worms its way in. It’s the unspoken presence every day of the person’s life—‘the cancer’s back’ or ‘in remission’ are common references in the life of the person with cancer. However, it continues to be the people who can fight it that make the whole disease seem beatable and worth fighting.” ~Anonymous

I was so touched by this inspiring quote, that I had to share it with all of you.  There were so many thoughts that came up for me when I read it.  As a cancer survivor, I can look back and see that it was a fight.  There were so many times that I wanted to give up, but I kept on going.  I am grateful to be in remission.  There is an “unspoken presence” ever since I was diagnosed.  I don’t feel it most days, but it is there.  It is something that I have accepted.

My hope is to stay in remission.  There is a recurrence rate of about 30% with my type of cancer.  But percentages don’t really mean much to me.  When they found my tumor, I was told that there was a 95% chance that it was non-malignant.  Regardless of the percentage, I knew in my gut that it was cancer.  When the results came back, it was confirmed that the tumor was malignant.  I was one of the people in the 5% category.  Those were not odds that I was happy about beating.  But it did teach me not to give percentages too much power.

I also learned that my health and well-being were worth fighting for.  Surviving cancer was worth the fight.  I was worth the fight!  It changed me.  I discovered my inner-voice and spoke up instead of staying silent.  I asked doctors all of my questions, instead of filtering the ones out that didn’t seem important.  I made the calls to my insurance company many times to resolve issues with coverage and billing instead paying the first bill I received.  I didn’t pay the price for the disconnect within the healthcare system.  I opened my mouth and talked about how I felt and didn’t pretend that everything was alright all of the time.  I prayed and prayed and had faith that it would all work out.  I created this blog to share my experience and help others.  In turn, I was able to get my virtual voice heard.  And to my pleasant surprise, I have gotten back so much love and support in return.

We are all worth the fight!

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

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.

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.

I met with my doctor yesterday afternoon.  He went over the results of the blood work and neck ultrasound with me. My levels look good!!  There were a couple of lymph nodes that we are watching, but they look normal on the scan.  Once again, I am cancer free!!!

My levels of calcium and vitamin D were a little low.  I should be taking calcium and vitamin D pills daily.  My doctor smiled at me and said “Take the damn pills.”  So this is something that I will start doing on a regular basis.

My doctor also told me to get Thyrogen shots and blood work to make sure we are not missing anything. Hmmmm…what? This caught me off guard.  I got Thyrogen shots during the low iodine diet to help my body prepare for the radioactive iodine treatment, but I did not know that it could also be used to further test my levels My understanding of Thyrogen is that it tricks your body into thinking that you have gone off of your thyroid medication.  This sure beats actually going off of your thyroid medication for a couple of weeks.  (I have not had to do this, but know many people who have done it.  More power to you!)  Anyway, when I got my Thyrogen shots in May 2009, I was amazed to find out that my insurance company covered it.  Each shot is around $1,200!  Two are required to get the job done.  So I was extremely grateful to my insurance company for covering the shots.  Now, I am supposed to get the shots again?

What a great topic to blog about!  I am going to do some research to learn a little more about Thyrogen.  I plan to write another post about my findings soon.  This opened up the door in my mind about the Thyroid Cancer SURVIVOR blog.  There are still many topics that I would like to write about here.  I’m going to do a “brain dump” to name a few.  Here is my random list:

  • Life beyond cancer
  • Preparing for tests and doctor visits
  • Affirmations and Mantras for cancer survivors
  • Being an advocate for your health – Ask questions, Speak up, Second Opinions, Feel heard
  • Health insurance coverage
  • Thyrogen
  • Calcium and Vitamin D post thyroidectomy
  • Swallowing food post thyroidectomy
  • Voice post thyroidectomy
  • Hot and cold flashes
  • Fertility with RAI (Radioactive Iodine)

That is all that comes to mind for now.  I would really appreciate your feedback, experience and input on any of these items.  What has your experience been?  What other items would you like to see posted on this blog?

Thank you!!!

As a cancer survivor, I get to go back for follow-up doctor visits, blood work, scans and more every six months.  Here we go again!  I got the blood work done yesterday.  Tomorrow I go to have my ultrasound scan after work.  Then I have an appointment with my doctor to go over the results at the end of next week.  Deja Vu!!

I’m getting the hang of it now.  The fear seems to lessen each time.  I’ve learned that worrying and negative thinking does not do me any good mentally, spiritually or physically.  (It reminds me of this quote I found.  “Worry is a huge waste of time; it doesn’t change anything, except maybe your blood pressure!” ~Author Unknown)

Trust me, I can list many other things that I would rather do with my time then getting more tests, scans and sitting in doctors offices.  But the reality is that I need to continue to be responsible for my health be doing these things. In turn, I am able to live a healthy life and free from cancer.