Thyroid Cancer


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. :-)

Wings of Hope Week 4 Update  12/21/09 – 12/26/09

*Written by our Team Coach Chris Kidwell Prestano

Four weeks into our fundraising for Relay for Life and we are STILL number 1! To date, we have raised $1,868 for the American Cancer Society. I could not be prouder of our team. We would like to give a special thanks to the following people:

• Supporters Dr & Mrs. Barry Cohan, Jonathan Meads, Robert E Ballard Jr, Frances Mankiewicz, Marie Drohan and Darren Johnson.

• ThyCa

• The thylicious Katie Schwartz

We would also like to welcome our newest team members: Darren Johnson and Brian Ferrina. Darren has walked a very personal road with cancer as both his mother and grandmother are survivors. We are very proud to have this caretaker on our team.

Angel McMellin is working away at planning our bake sale. So if you know a location in the Baltimore, MD area where we can have this event, please let us know. We are also in the process of creating team signs for the Relay.

We need to start tracking down camping gear for April 16th – tents, chairs, sleeping bags, coolers, etc., so please start asking around to your friends and family if we can borrow these supplies for the event.

Please keep Darren Johnson in your prayers this week. He just lost a friend to cancer (the same day my two aunts died). He needs our support and comfort during these times. And please say a prayer for Marie Drohan. She just lost her grandmother to cancer.

We hope the holiday season is finding you safe and happy and wish all of you a wonderful New Year. And thank you again to all of our generous supporters and our energetic team members.

Until next week… Wings of Hope

Since my papillary thyroid cancer diagnosis over a year ago, I have been on a mission to learn as much as I can about it.  It has also become important to me to spread awareness and help others that have been diagnosed or survived cancer.  I’ve noticed that the mainstream media often covers the “popular” cancers, but I haven’t heard anything about thyroid cancer.  So I was very happy to hear that NBC Nightly News was going to do a segment on the increase of thyroid cancer in women.

I watched the segment and thought it was interesting to hear some of the statistics.  This year more than 27,000 women will be diagnosed with thyroid cancer and 10,000 men.  The incidences in women have been increasing by an astounding 6.3% per year.

They made mention that the cause of thyroid cancer is still a major medical mystery and why women are more susceptible than men is still unknown. Scientists have long known that radiation can be a cause of thyroid cancer.  Studies last week found that CT Scans can give off more radiation than doctors are even aware of. (Well that’s extremely upsetting to learn.)

Before I go on and on, here is the actual NBC Nightly News segment on thyroid cancer in women http://www.msnbc.msn.com/id/3032619/#34516179.  I welcome you to review it and leave a comment.

The good news is that the increase in thyroid cancer is getting noticed and in turn the public is hearing about it more and more.  So awareness is spreading and that is hopefully going to cause someone who found a nodule in their neck go to the doctor sooner than later to get it checked.

Wings of Hope Weeks 2 & 3 Update (12/6/09 – 12/20/09)

-The following was written by Chris Prestano

If you thought our first week was exciting, wait until you read about our progress over the last 14 days! Wings of Hope is still the number 1 fundraising team for the Relay on April 16th! In only three weeks we have raised $1,803.00 for cancer research. Way to go team!

We would like to give special thanks to the following people:
• Supporters Damien Lau, Kat Caverly and Linda Santagelo
• Our anonymous supporter who generously donated $50.00 to our team.
• Team Members Rachel Markus, Lynne Bridge and Larry Bridge for their fundraising efforts.

In addition, I would to thank Co-Captain Jennifer Bridge for all of her continued hard work. Not only has she been keeping her blog up to date with our progress, but she has been incredibly busy on our facebook page and she has been recruiting team members with a vengeance!

We would like to welcome our new team members:

• Thyroid Cancer Family Members Lynne & Larry Bridge
• Supporter Christina Colley
• Supporter Mary DiMaggio
• Supporter Rachel Markus

We now have a team logo, which can be seen on both our team facebook page (http://www.facebook.com/group.php?gid=186281329422&ref=nf) and our Relay for Life page. (http://main.acsevents.org/goto/wings2010), our team facebook page.  Also, our t-shirts from Dear Thyroid are on their way. Thank you again ladies!

We would like to welcome our team member Angel McMellin home. She received her radioactive iodine (RAI) 131 treatment seven days ago and it is now safe for her to be home with her family – just in time for the holidays.

We have many exciting things in the works to keep our momentum going. The very talented Angel is planning a bake sale and working on a team banner. If you would like to help with the bake sale, please contact her. I know she can take on the world, but I’m sure she’d appreciate the help.

On another note, I am sad to say that my aunt Thelma Kidwell passed away from cancer on Saturday. She battled stage four lymphoma and was in remission for five years before it returned and took her life. She will be honored with a luminaria at the April 16th event.

Remission should be permanent. And we need all the money we can get to find a cure for cancer. 

We hope the holidays find your safe and happy, but please take a moment to say a prayer for all of those whose lives have been affected by this terrible disease.

Until next week…

Wings of Hope

Some may call it six degrees of separation, the butterfly effect or good timing, but I call it a small world.   Here’s the cool little story.  About a year ago, I started “tweeting” on the international social networking site called Twitter.  At the time I had just been diagnosed with having papillary thyroid cancer and was tweeting all about it.  That’s where I “virtually” met Chris Prestano.  She had also been recently diagnosed with thyroid cancer.  So we had a common bond.  (Now keep in mind that Twitter has millions of people on the site from all over the world.  What are the odds of Chris and I connecting?)

Chris and I eventually became friends on Facebook as well.  We needed a place that gave us more than 140 characters at a time to message back and forth!  We emailed and IM’d over the course of several months, keeping each other updated on our progress and treatments. 

I soon discovered that Chris was living in NYC and traveling to Johns Hopkins Hospital for her doctor’s appointments, treatments and all the other fun things we get to do when being treated for thyroid cancer.  Well that might not seem like such a big deal to you, but it was to me.  Why? Because I was also was going to Johns Hopkins Hospital for my treatment during that time!  Well that’s just the beginning, so read on…

Chris told me about an organization called ThyCa and how they had monthly thyroid cancer support meetings in Baltimore, MD.  This sounded great to me and it close enough for me to drive there.  I really wanted to connect with other people face to face who had experience to share about thyroid cancer.  I decided to go to my first ThyCa meeting in November.  Chris was going to be in town that same week, so we decided to meet at the meeting.  It was nice to finally meet her in person.  We went to lunch after the meeting and spent a couple hours sharing “our stories” and our ups and downs.  What strong women we are!  During lunch, we were talking about cancer fundraisers and how thyroid cancer is in the shadows of it all.  I mean how often do you see people walking around with a ribbon for thyroid cancer? Exactly!  We wanted to do something.  Chris mentioned the American Cancer Society’s Relay for Life and it sounded really interesting to me.  So that is when the seed was planted for what has now turned into our “Wings of Hope” team.

I was contacted by the wonderful Katie Schwartz, Founder of the amazing site Dear Thyroid to write a post on my blog in December for their upcoming “Thyoliday Blues and Truths” series. When Katie asked me to pick a date for Dear Thyroid to post it on their site, I went with December 1.  

It seemed like all of these “thybulous” things started to snowball.  Chris got more info about Relay for Life and registered our team. Angel (another thyroid cancer survivor and ThyCa meeting attendee) joined our team and we were super excited!  It was actually coming together.  And it just so happens that Dear Thyroid had been in contact with Chris and offered to provide us with shirts for Relay for Life!  

So December 1 came around and my blog post was on the first page of the Dear Thyroid site!  What a proud moment that was for me. (Here’s where it all comes back together again.)  I scrolled down and the very next post was one titled, “Chris Prestano, Thyroid Cancer Survivor & Fighter Is Racing For A Cure” written about Chris and our Wings of Hope Relay for Life team!!! What? Are you kidding me?  I just happened to pick December 1 for Dear Thyroid to put my blog post on their site and it was the same day that they posted the one Chris wrote about our team.  Oh come on!!!

So that’s the cool little story about how Chris and I were brought together by thyroid cancer and joined forces to kick cancer’s ass.  It’s a small world!

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 (http://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

“Kicking Thyroid Cancer’s Ass” is what it will say on the front of our team’s shirts at this year’s Relay for Life for the American Cancer Society.  Oh yeah!!!  Our team name is “Wings of Hope” which was given by our rockin’ team captain, Chris Prestano. We are putting the team and details together now and it is off to an amazing start.  Our friends at Dear Thyroid have been kind enough to provide us with the shirts.  ThyCa is going to send us literature to hand out so we can spread more awareness about thyroid cancer.  We’ve raised almost $600 and have a team of 4 wonderful women at the moment.  Much LOVE to my girls Chris, Angel and Jen E!! (By the way, did I mention that all of this has happend in less than a week?)

According to the American Cancer Society…”Relay began in 1985 when Dr. Gordy Klatt, a colorectal surgeon in Tacoma, Washington, ran and walked around a track for 24 hours to raise money for the American Cancer Society. Since then, Relay has grown from a single man’s passion to fight cancer into the world’s largest movement to end the disease. Each year, more than 3.5 million people in 5,000 communities in the United States, along with additional communities in 19 other countries, gather to take part in this global phenomenon and raise much-needed funds and awareness to save lives from cancer. Thanks to Relay participants, we are creating a world with more birthdays a world where cancer can’t claim another year of anyone’s life.” 

So this is the part where I reach out to my supporters and ask for you to write an inspiring comment below and/or make a donation for this “Kicking Thyroid Cancer’s Ass” cause by going to my page at http://main.acsevents.org/goto/thyroidcancersurvivor and help me reach my personal fundraising goal.  Thank you!!!

I will be posting more about my thoughts, ideas and other random things leading up to this amazing event.

  

Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Questions from Dear Thyroid:

1)       Have the holidays and your experience of them changed since you’ve been diagnosed?  I was diagnosed a year ago.  I’ve now had a chance to experience all of the holidays over the past year since the diagnosis.  I have found that my attitude has changed to an “attitude of gratitude” on a deeper level since I was diagnosed with having thyroid cancer.  Being able to spend time with friends and family during the holidays really is a gift.  I don’t take it for granted anymore.  At Thanksgiving we go around the table and share what we are grateful for one by one.  The top things on my list were “surviving cancer” and “family that supported and loved me through my journey.”

2)       What is your favorite holiday food/dish from childhood?  What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)  My favorite holiday food from childhood was mashed potatoes.  Now it’s changed to stuffing, cranberry sauce, sweet potatoes and string bean casserole (during Thanksgiving).  I like the sides better than the turkey.  Oh and pumpkin pie is one of my all time favorite desserts anytime of year.

I did have to alter my diet to a LID (low-iodine diet) to prepare for the RAI (radio active iodine) treatment.  The good news is that it was not during a holiday and I’m thankful for it!

3)       Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?  Nothing comes to mind for this one.  I’m very close with my family, so everyone knew that I was diagnosed with thyroid cancer during the holidays last year.  This year they all knew that I was a cancer survivor.  There are certainly tons of “what-were-they-thinking” things said during holiday dinners, but that’s as much a part of the holidays as overeating.

4)       How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?  I focus on being grateful for all of the blessings.  We all have a choice of what we spend time thinking about, so I give power to the good thoughts.  It’s easy to feel pity for myself or negative about life at times, but that just adds to the stress.  I talk about how I feel with the people that are closest to me.  Verbally processing it with someone else always helps relieve the stress and put things back into perspective for me.

5)       Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses?  If so, how do you educate them?  This usually happens in side conversations if someones asks me.  I don’t have the need to just talk about it when we’re together for the holidays.  However, they have become supporters of my thyroid cancer survivor blog.

6)       Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?  My voice has been affected since the thyroidectomy.  Over time, my speaking voice is pretty much back to normal, but when I talk loudly or try to sing, it is very noticable.  It is upsetting to me.  I am looking into some options to strengthen my voice.

7)       Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?  Of course I have!  I could write many letters including a love letter, hate letter both to and from my thyroid.  I’m still on the thyroid cancer survivor “journey” and will be for the rest of my life.  So as I think about it, I believe that all of the different thyroid cancer phases and experiences have given me reasons to write a variety of Dear Thyroid letters.

8)       If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?  Thyroid cancer is cancer.  Through my experience, I was so surprised at how many people minimized thyroid cancer by calling it the “little C” instead of the “big C” or compared it to other cancers.  It made me feel like my cancer wasn’t good enough.  I was even told that if I had to have cancer, this was the “best kind of cancer” to have because it is so treatable.  I have learned that cancer is cancer.  

Education and information about thyroid cancer will help.  People need to understand more about thyroid cancer, early detection, symptoms and treatment. I don’t think many people realize the impact that it has on the life of the person diagnosed with cancer.  So it does not help to minimize it to the person that was just diagnosed.  The treatment and mortality rate might be different with certain kind of cancers, but it does not mean that the person diagnosed with cancer feels any different.  We are still human.  We all have the same feelings in common.  We all need support, love, compassion and positive motivation in our lives.  I’m thankful to have people that have given me these things.  I started my thyroid cancer survivor blog to give back, promote awareness and information about thyroid cancer and give everyone touched by cancer a common place to connect.

9)       What is the greatest misconception regarding thyroid disease and thyroid cancer?  Many people don’t think you can die from thyroid cancer. I also found that people believe once the thyroid is removed, the cancer is gone.  The fact is you can die from it and it can come back even if after a thyroidectomy.

10)    What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry? Some people seriously asked me if I glowed in the dark after my radio active iodine treatment.  That one still makes me laugh. :-)

Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

Knowledge is power!  Below are some websites I have found to be helpful.  They have good information about the thyroid, thyroid cancer, radioactive iodine (RAI) treatment, low-iodine diet (LID) and other thyroid cancer related topics. 

   

ThyCa: Thyroid Cancer Survivors’ Association http://www.thyca.org/  If you’re looking for yummy LID recipes be sure to visit Thyca Low Iodine Cookbook 

 

Thyroid Cancer Songs  http://www.thyroidcancersongs.com/index.html  These fun songs are sure to lift the spirit and remind people with thyroid cancer that they are not alone.

 

Thyroid Cancer Site http://thyroidcancersite.com

 

American Cancer Society http://www.cancer.org 

 

Relay for Life http://tinyurl.com/jhurelay4life

 

 American Association of Clinical Endocrinologists http://www.aace.com

 

American Thyroid Association  http://www.thyroid.org 

 

 http://www.thyroid.org/patients/brochures/ThyroidCancer_brochure.pdfhttp://www.cancer.gov/cancertopics/types/thyroid  

 

http://www.mythyroid.com/thyroidcancer.html

 

http://www.cap.org/apps/docs/reference/myBiopsy/papillary_thyroid_cancer.html

 

http://www.hormone.org The Hormone Foundation 

  

http://www.cancerhelp.org.uk/help/default.asp?page=5437#recover Life after thyroid cancer 

 

http://www.thyroid-cancer.net Johns Hopkins Thyroid Cancer Center  

http://www.thyroid-info.com Unbiased News, Books and Support 

 

http://www.dearthyroid.org Literary thyroid support community 

  

http://checkyourneck.com  Light of Life Foundation 

 

http://twitter.com/tcancersurvivor  If you’re on twitter, follow me! 

If you have helpful thyroid cancer sites to add, please post them in the comment section.  I will add them to this blog after reviewing them. 

 

Thanks in advance!

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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