Tag: Thyroid Cancer

Anniversary #8 – My Journey with Thyroid Cancer

8 years.  

That is how long it has been since I heard the diagnosis that I had Stage 3 thyroid cancer and received a total thyroidectomy with neck dissection.  Over 80 nodes removed from my thyroid and neck –  with 1/3 or more of them to be found riddled with papillary cancer. Thankfully, I was in AMAZING care thanks to Dr. Ralph Tufano,  my surgeon from the renowned Johns Hopkins University Hospital.  Eight years later, I continue to be in his debt – as his surgical skills earned his place in the global medical arena as “Top Doc”.

I hate to disappoint, but that is all for my walk down memory lane. If you are really curious about the first seven years of my journey hit this link >> Louise’s Cancer Journey.   (Note; the first blog is here)

Now I am going to fast-forward with an effort to educate and enlighten readers with a few new updates in the world of thyroid disease.

First… not all diseases of the thyroid are malignancies.  There can be other “stuff” that goes awry in your body caused by a thyroid issue.  Here are some common maladies and disorders that may surprise you are caused by this little gland! 

Sadly, thyroid issues are on the rise and appear more than ever in children – even younger than 10 years of age! Reasons for this phenomenon vary – but many feel that environmental issues may be part of the problem. 

Also, new information about thyroid cancer is the updated research regarding this cancer’s genetic components.  After participating in a few medical studies, I was interested  in these findings about which variations of the cancer can be passed on to family members and which are just due to bad luck happening in your own body! (After genetic counseling and testing, I found out I had bad luck but my relatives are all “good to go”!)

Lastly, a reminder to  trust your intuition.  I have said this year after year –  I KNEW something was NOT right with my body.  I was gaining weight at a rapid pace and just didn’t have the energy I usually did. For someone as hyper as me, that was a concern! Only after a crazy string of events was my cancer discovered and by then it was aggressive.  Thankfully, I received GREAT medical care and am happy to report that all is “status quo”.  I did receive a bit of a lecture this year from my other Top Doc, Dr. David Cooper, from JHH.  He advised me to reduce the stressors in my life so I can  stay healthy. I took his advice to heart and  I deleted what didn’t need to be in my life.  It hard for someone as ADHD as me to work on having more work-life balance – but I am!

Feel free to share your experiences with thyroid issues in the comment section. We are all here to learn.  Also, here is a PSA I made several years ago with the corresponding outtake video.

Also, the number 8 when placed on its’ side looks like the INFINITY ∞ sign.  I would say that is quite apropos!

Be well.

xo,

Louise.

 

 

 

*Music by Will Z

RIP Tess Sattler (our beloved White Shepherd)

Lucky 7 – Life after a thyroid cancer diagnosis

Is 7 really a lucky number? For me it is. Or at least I think it is.  You see, I realized this week that the number seven has resonated with me throughout my thyroid cancer journey. Yet, only recently did I connect the dots as to why it is indeed “lucky” or at least significant.

7a.m – The time I arrived to the surgical unit for my operation.

Seven hours. The number of hours Dr. Ralph Tufano, (my hero) performed surgery on me at Johns Hopkins Hospital.

Seven days.  That was the length of time the post-operative drains remained in my neck. (Seven minutes was all had on the “patience meter” for living with said drains.)

Seven weeks.  That was the time it took for me to get my voice sounding more like me and less like a prank phone caller.

Seven months.  That was about the amount of time I needed to brave going out without a scarf around my neck to shield people from seeing my scar. (July is one hot month and the seventh one!)

Seven years have passed since January 5, 2011 when I had my surgery and my life was forever changed.  You may think this was a tantamount day filled with dread, but in reality many amazing things have happened from that day forward.

Related articles: If you are interested in the “whole saga” here is a link.

And, per usual I will use this forum to share some life lessons. (Forever an educator) Although this year the theme may be a bit “lighter” than in the past. (Side note: read to the very end, please.)

The seven lessons I want to share in my annual “post cancer blog” are … 

  1. 7 is the number of continents in the world. Go explore them while you can.
  2. 7 good friends is better than a lot of people pretending to be your friend.
  3. 7 pairs of shoes may be an Ok amount, but in reality I own three times that number.
  4. Social media forums cite 7pm as a popular time to be online engaging with others and reading articles.
  5. 7 is considered one of the luckiest numbers, according to Quora, because there are  Seven Seas, Seven Heavens, Seven Continents, Seven Colors in a Rainbow, Seven Notes on a musical scale, Seven Days in a week, Seven Wonders of the World and so on. Seven is considered to represent the “extraordinary”.
  6. 7 is the number of chakras the body possesses.
  7. Seven minutes can be all it takes to check your neck with an ultra-sound to see if you have a healthy or unhealthy thyroid. Seven minutes- worth every one of them.

The seven chakras.

 

 Now for the serious “stuff”…

First, be your own health advocate. If you feel that something isn’t right with your health – go see a doctor or two if you are not satisfied with the first opinion.

Next, CHECK YOUR NECK.  At least once a year – have your doctor check your neck for irregularities.  Are you gaining weight suddenly or losing it without dieting? Do you have a chronic sore throat or persistent cough.  These are all red flags that something could be amiss and a due to a thyroid issue!

It wouldn’t be my annual “cancer” blog without a nod towards helping others via #socialgood

Each year, since my cancer journey began, I  spotlight ways to help people who are  diagnosed and living with cancer.  This year I am asking that readers of my blog consider supporting the  CYCLE FOR SURVIVAL campaign.  My daughter, Natasha, is participating with the Cycle for Survival fundraiser and any support would be greatly appreciated.  Here is the link.  EVERY DOLLAR RAISED goes towards funding  research for rare cancers via the Memorial Sloan Kettering Cancer Center.

 

About Cycle for Survival

Join the Battle

 

  • *An estimated 1,688,780 new cancer cases will be diagnosed in 2017.
  • Approximately 50% of people with cancer are battling a rare cancer.
  • Rare cancers include brain, pancreatic, ovarian, thyroid, and stomach cancers; leukemia and lymphoma; all pediatric cancers; and many others.
  • Each year MSK treats more than 400 subtypes of cancer.

 

As always, thank you for reading and remember… CHECK YOUR NECK!!  Lastly, If you do donate to Cycle for Survival, please let me know and I’ll be sure to thank you personally on Twitter via my account (@LouiseASL).  You can leave me a message here or connect via any of my social platforms. Thank you!

xo,

Louise

 

Six Years Later

I am a lucky person. Very.  Rarely a week goes by that you don’t hear about someone being diagnosed with cancer and about others’ who don’t survive. But, I was. And, I did. That makes me a very lucky person and I don’t take being a survivor for granted. Ever.

Now I know I had the “good cancer” – thyroid.  But, let me tell you there is no good cancer.  No sentence that has cancer as one of the words will ever be “good”.  (Correction: The only acceptation would be if the sentence read: Scientists have a 100% cure for ALL cancers.)

As many of you know, I am a consummate educator. That means I like to share life lessons.  Let me tell you what I have learned six years and seven months after my 7-plus hour surgery for papillary thyroid cancer.

  1. Don’t get lax with taking care of yourself.  Go to your regular scheduled medical tests. Listen to your body and seek help when you feel that “something isn’t quite right”.
  2. Delete the toxic things in your life.  That may mean bags of chips, soda or some people. All can make your life challenging and your health compromised.
  3. Keep a journal or a blog.  The big “C” is too hard to keep to yourself.  You can’t do this journey alone. So, don’t.  Moreover, you shouldn’t  rely solely on friends and families. Some of the heavy lifting with improving your health has to come from within yourself. It is amazing how strong one becomes when it comes to doing this kind of “lifting”.
  4. A sense of humor is as important as anything else that keeps you going. Laughter may be your second weapon in your arsenal of getting healthy.  Or at least a key “player”.
  5. Pay it forward.  Your path with cancer will never be the same as another person’s. However, your experiences may be helpful with the education of another. So, share what you have learned and be willing to sometimes switch roles and be a student.  I for one freely share that Johns Hopkins Hospital and Drs. Ralph Tufano and David Cooper were KEY to my diagnosis, survival and continued health.  I will be forever grateful the them and their respective teams at JHH.
  6. Reward yourself.  Each year when I leave JHH after my annual tests I stop at the hospital gift shop. If my tests are negative (good news) then I get to buy myself a gift.  After six years of prodding from tests and lots of “negative”, I have amassed a number of JHH t-shirts, hoodies, bags and this year a birthstone ring.  (One can only have so many shirts and hoodies!)
  7. Celebrate. In the last six years I have learned to celebrate the small and large milestones of life.  Every completion of a treatment, an anniversary, birthday, family event, milestone – they all get celebrated!

 

Thanks for reading and feel free to comment below!

My annual reminder that I survived cancer

Every year I go on my annual trek to Johns Hopkins Hospital (JHH) to undergo a few assorted tests and visit with one of my Top Docs.  As you may know, JHH is known for Top Docs across many specialities, mine happen to focus on “matters of the neck and thyroid”.   This annual “date” with Top Doc is important, albeit nerve -wracking. I tend to use this time to reflect, write and educate – about Thyroid cancer and navigating the world as a cancer patient.

Read about my initial diagnosis with Thyroid cancer here

What I have learned to get me through the annual ritual “recheck” process?  Well, for starters it is good to have a support team who will cheerlead you in to the appointments and then help (hopefully) celebrate afterwards (or pick you up if the news is not so good.).  Pick your cheerleaders carefully.  You don’t want those that are “armchair quarterbacks” or wanna be docs. You just want people who will bring you coffee and candy upon request.

What I also learned through this ridiculous process is to surround yourself with only positive people. There is no room for negativity when you are dealing with matters of importance – such as kicking cancer’s ass out the door.  I prefer to do most of my appointments alone and then pace the corridors of JHH until given the “all clear” to go home.  But, others may wish to have their “team” present and waiting. Just make sure they are all helpful vs. hinderers to your wellness.

And, when the Top Doc says you continue to be LWD – living with disease – albeit microscopically – you just shake your head and thank the good Lord that the news isn’t worse. In my case, LWD just means that you get to live a long life with some cancer varmints hanging out somewhere, but not being more than a microscopic pest.  Kinda like knowing there is one bug in your house that  survived a fumigation, but you just can’t seem to locate it.

Most importantly, when all the tests are done go and conduct retail therapy.  In my case, I always purchase something totally weird from the hospital gift shop. This year a very odd looking sweatshirt with Johns Hopkins Hospital emblazoned on the front.  I wore it proudly on the plane ride home.

To summarize my recommendations for post-cancer check-ups:

*Go where there is the best of the best. Your health deserves it.

*Bring positive friends and family (if you wish), celebrate good news, and surround yourself with those who will be helpful if the news isn’t so great.

*Eat chocolate and drink … whatever!

*Conduct retail therapy.  Remember that tie-dye is never out of style if it makes you happy.

Wishing you all the very best of health,

~Louise

p.s.

Here are more articles about my experience. Hope it may help someone who reads this blog.

 

 

TWO YEARS LATER… My journey with Thyroid Cancer

It has been two years since I went “under the knife” and started my battle as a cancer warrior goddess against Thyroid Cancer.  I didn’t intend to do an annual update blog, but considering that several of my friends are now members of the cancer club, been diagnosed with thyroid disease or are enduring other trials and tribulations of simple aging… I thought a post on the light side of life might be what the “doctor ordered”.

Enjoy the list of must haves when you are battling “whatever”…

1. Have a theme song.  It was very important for me to have a theme song that made me smile no matter what treatment or follow-up evaluation I had to endure.  Trust me the drinks for a PET scan and wait for results is much more bearable when you are listening to the Black Eyed Peas sing  I GOTTA A FEELING.

2- Have a special “lucky outfit” that you wear to your treatments and tests. I LOVE my Gallaudet sweatshirt and so far .. it is dang lucky!

3- Load up the Kindle, iPad or other device with mindless games, books and magazines to make the endless waiting for procedures or results go faster.  I am now a huge fan of ANGRY BIRDS and SCRABBLE online.

4- Celebrate each step of the process that you can cancel off the list.  Last treatment. Last pill. Last visit for six months.  Just celebrate, if you can.

5- Wake up happy. Each day is a gift- so don’t waste it.

p.s. Thanks to Top Doc at Johns Hopkins for being a great surgeon and making this my two year survival anniversary!  I know you read my blog.. 😉

Video from YouTube – Blacked Eye Peas and Oprah- thanks!

REMISSION

REMISSION – To  a cancer patient this is a word that makes your heart sing and your feet want to dance.  Almost two years ago to the day of my writing this blog I had the news that no one likes to get.. “Your test results show that you have cancer.”  If you read this blog on a regular basis you may recall that I was diagnosed with Thyroid Cancer in 2010 and underwent invasive surgery January 2011.  My story is chronicled in the articles you will find listed below (among others) on this blog.

Two years later and countless more encounters with doctors, patients new to the world of cancer and media folks this is what I have learned…

  • REMISSION is a beautiful world.
  • The longest wait is the one from the moment you take your “tests” until you get your results. It could be a few minutes, days or even weeks. But, if you are like me it is hell whatever the time period.
  • Your story is your own.  Others may have similar circumstances or “know someone” who had cancer “just like you”, but the reality is that everyone has a unique story and that is because the devil- cancer- likes to change its’ course from person to person.
  • Never give up hope and faith.  For some, this is all they have during their battle.
  • Share and educate.  I learned so much from others that was helpful (like lemon drops to soothe the effects of radioactive iodine treatment).

Feel free to comment below so that others can have hope, faith and be educated. THANKS!

~Louise aka “woman in remission”

Previous Blogs of my Cancer Journey:

HELLO, now go AWAY

My Year of Learning to Kick Cancer Out the Door

I am the face of Thyroid Disease- PSA in sign language

January is Check the Neck Month

Happy January everyone!  This week is the anniversary of when my thyroid and I “divorced”.  We parted ways in a surgical room at Johns Hopkins. Although it was a bitter divorce I am glad that I walked away from my experience healthier, wiser and more appreciative of the family and friends who helped play the role of CANCER WARRIOR GODDESS SUPPORTERS.  In my ongoing efforts to stop Thyroid Cancer from being a beast in another’s life, I am reminding all of you to check your dang neck!

If you have a persistent cough, are hoarse, have small lumps or unexplained weight loss or gain- it is time to go to the doctor and be an advocate for your personal health! Ask for an ultrasound, bloodwork, etc.  The facts are that cancers of the thyroid, especially among women, are on the rise. Don’t let a physician tell you that it is because of menopause, allergies, etc. I heard ALL of that and guess what.. it was CANCER!   My cancer was found on a procedure for a dental problem!

Here is some information that I also had posted on the 411 VOICES website.  And, for those who missed the PSA I made for the I AM THE FACE OF THRYOID DISEASE campaign last year, I am reposting the video.

Lastly, I don’t ask for a lot of readers.. but this time I will request one itty bitty favor.  CHECK YOUR NECK and remind someone you love to do the same! Thanks….

 To learn about Thyroid Cancer symptoms, treatment and support   see the info sites below.   

Dear Thyroid  (website)  Dear Thyroid LOVEHATEYOU (Facebook)

THYCA.org  (for information about “all things” thyroid)

Thyroid-Cancer.net

Medicine Net

2011 – Learn, Create, Support, Educate and Breathe

This has been quite a year! So, as usual I will defer to photos instead of words to capture the year – end synopsis. From many traveling opportunities such as to Mac World with The PaperShow, EMS trainings, Parent- Child workshops, to creating educational videos for abcteach.com, products for SIGNING FAMILIES (hence all the kids in photos), and including tons of time working in media and social media and with Education.com, expanding my professional horizons with the  co- creation of 411 VOICES and my joining The Linicomn Agency – LA Division for Exceptional Talent, to time time with family and friends and battling the beast (cancer) only to turn those lemons in to a Twitter-esque lemonade, and much more!… WHEW..

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My Year of Learning How to Kick Cancer to the Door

It has been a year since I heard the words that no one wants to have burned in to their brain- Sorry, but you have metastatic cancer.  Yep, that was me.  A little more than a year ago.  It was a sunny day. I was going for what was suppose to be a “no brainer” ultrasound of a few “probably nothing” nodes in my neck. I walked in an optomist thinking of nothing more than how I would spend the rest of the day after the procedure shopping.   I walked out of Johns Hopkins outpatient center a statistic – someone with cancer. WOW! In fact, according to some recent stats, I was one of 357,000 women living with Thyroid cancer. Oh Goody!

Because people sometimes read what I write or ask me to speak in media, I get to talk about my Life with Cancer – a lot. As an educator, I don’t mind. It gives me an opportunity to set the record straight and educate others about being proactive with personal health issues. I learned from the best on how to be an example of someone who lives with cancer BUT is not defined by cancer, from my friend and colleague, Maimah Karmo.   I learned to blog about my  pre-op, post-op and treatment phases. I helped others learn too by talking to groups, being interviewed and blogging for others on websites such as, DEAR THYROID.    I even filmed a PSA for IamtheFACEofTHYROIDDISEASE.org.

I learned that you can’t be a member of this “club” alone. That people will come and rally around you. Friends and family will support you in ways that are just too numerous to count. I was really lucky to have a bunch of Cancer Warriors join my team. They all should know who they are and consider this a group hug and THANK YOU!   And, a huge thanks to  all the Top Docs at Johns Hopkins Hospital.  Overall, I was damn lucky this year to have so many in my corner.

     

I realized pretty quickly that if I had to go through this crap that I should do it with grace, humor and a purpose. So, I decided to run a TWITTER SCARF campaign. I stole the idea from my friend, Shara Lawrence-Weiss.  (Pictured wearing her TWITTER avatar hat.Read the TWITTER story here). In essence, I changed my TWITTER avatar to be a free advertisement for a company or foundation. I simply would wear a different scarf and photo shop their logo.  The company would then in turn donate monies to the charity of their choice. I had a lot of response and together we all donate almost a thousand dollars. Purpose.. yep- cancer can give you purpose when you are not caught up in the anger.

Now it was not all fun and games. Cancer never is. The treatment for thyroid cancer is not as bad as other cancers. I didn’t have to have chemotherapy, but I did need to have Radioactive Iodine treatments – which are no joy.  The worst part of the process, however is the waiting. Did the treatment work? Do I need another? Is anything else growing and if so, where?

I also learned some really important life lessons. Cancer is expensive and insurance companies can’t make those co-pays magically disappear.   I learned that not all people want to stick by you and remain friends because cancer may be “contagious”.  Real friends stick around and those who are just in it for only the “good” but not the “bad or the ugly” will run for the hills.  I heard from others who also are in the cancer world that it is not uncommon for  relationships to unravel. That is a shame, but a reality. As I mentioned, I’m grateful for those who stuck around (including my amazing hubby) and deleted the rest. Cancer can be an emotional brain sucker.  No need to spend any synapses worrying about those who were afraid that they may “catch’ the BIG C.

I will no doubt have more journey in the coming years. Cancer doesn’t like to just go away easily. There is always follow-up scans, blood work and more. Even if you are in remission you still have “more to do”.  But, I intend to kick cancer to the door in 2012. Not the front door, but the back door. Cancer doesn’t have the right to go out nicely.

Lastly, Happy Holidays and please feel free to share your pearls of wisdom if you too have been on a cancer journey this year or in the past. Let’s all learn from each other.

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