Category: thyroid

13 years in print with orange background

13 Years – Post-Thyroid Cancer Diagnosis

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January 2, 2011. The day I wrote my first blog about being diagnosed with thyroid cancer. Little did I know then about what life would look like 13 years later.

January 5, 2011. That was the day that I was rolled into the operating room at Johns Hopkins Hospital and found to have Stage 3 thyroid cancer. It also was the start of my life as a Cancer Warrior Goddess. I decided to make the BIG C into a set of teachable moments (and blogs). One that people loved was for TWITTER SCARVES for CHARITY. How times have changed as I gave up my active Twitter account when it became X!

And, after 13 years I have written much about what I have learned from this cancer journey—the good, bad, ugly, and occasionally comical. Yes, like much in life, my cancer journey has come with a few humorous moments. For example, I will never forget a Hopkins “Junior Doc” asking me during a post-op check-up if the pain in my neck felt like I had been “hit by lightning?”. I tried to explain to him that my discomfort wasn’t THAT serious.

Shortly after, I wrote about this interaction, I discovered “Top Doc” read my blog and decided to use my “lightning” example as a teachable moment. Frankly, I was amazed that Top Doc found the time to read my blog!

Moreover, in these last 13 years I shared some information to educate. This included a few articles about thyroid cancer’s red flags. Also, I have been a contributor to the THANC Foundation and filmed a PSA using sign language about thyroid cancer for the Deaf community.

Related: American Cancer Society – Thyroid Cancer and disorders

In closing, I am lucky. 13 years lucky. Thank you to all who have taken this journey with me and been a support. Most of all – thank you to the medical community who made sure I could celebrate 13 years… and counting…

After 10 Years I am STILL a Cancer WARRIOR GODDESS!

Published on by Louise Masin SattlerLeave a comment

January 5, 2011 I spent 7 plus hours under the knife at Johns Hopkins Hospital to remove Stage 3 thyroid cancer throughout my neck. My hubby can give you a play by play as how that day went through his lens. How he waited all day to hear I was done and instead received lots of medical updates- hour after hour. He also can tell you he was one of the first to arrive in the JHH waiting room and the last one to leave that day. As for me, I remember very little except being asked upon my waking to recall anything I said from the morning before they dosed me with heavy duty anesthesia. My answer: “I am STILL a cancer warrior goddess?”. The nurses and doctors laughed and looked relieved. I laughed with a very froggy throat, too. Apparently, my talking was a sign that my vocal chords were still working, albeit very raspy. “Top-Doc” wasn’t too sure that would be the case – so my declaration – was considered the evidence of medical success.

Related: Warning signs of thyroid cancer: click here

Ten years later and countless tests, trips back to Hopkins for follow-up exams, and blogs later, I remain vigilant with my health and a bit of a crusader for thyroid wellness of others. I also recognize that I have had my own challenges after ten years. My voice still gets raspy and there have been times when I simply couldn’t talk for days, weeks or months. (Once again proving that knowing sign language is a skill we all should have!) Plus, a good head cold can put me down for the count for a week or more. I don’t have the immune system of most folks and that makes Covid 19 really really sucky! And, losing the weight I have gained is my biggest challenge.

Yet, I do have an immense sense of gratitude for the medical professionals who have cared for me since my diagnosis late 2010. I also want to reiterate my “mantra” – be your best advocate. I had ZERO of the usual red flags for thyroid cancer except for weight gain. Rapid weight gain! I was told it was menopause. It wasn’t. So, if you feel something is “amiss” – then you are more than likely correct and should keep seeking answers until you feel better or more at ease.

No blogger should post without taking time out to stop and thank their audience. That includes me. I want to extend a heartfelt THANK YOU to all of YOU. For more than a decade many of you have read this blog, commented and shared. You helped to educate others and also yourselves. I appreciate you. I pray for your health and hope that all of us have better days ahead.

If you are new to my blog and wonder what the heck I am talking about?… Well … here are links to get you started to learn about my journey and perhaps find some nuggets of help for you, too. If you are a recurring reader – again thank you and enjoy the re-runs below.

2010: Hello, Now Go Away!!

January is Check the Neck Month!

Dear New Thyroid Cancer Patient

Remission

My Year of Learning How to Kick Cancer to the Door

TWO YEARS LATER… My journey with Thyroid Cancer

My annual reminder that I survived cancer

Six Years Later

Lucky 7 – Life after a thyroid cancer diagnosis

9 Years – Post Thyroid Cancer Diagnosis

ASL video on my cancer experience

Twitter Scarves

This blog is dedicated to all the wonderful healthcare professionals who have helped me during my cancer journey and have supported and cared for the the health needs of others.

Also, dedicated to my friends who have experienced “lumps” in their roads and have survived with grit and grace. You are my inspiration.

9 Years – Post Thyroid Cancer Diagnosis

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9 years. Nearly a decade. That is how long it has been since I learned that I was joining a “club” of thousands. The one with people diagnosed with metastatic thyroid cancer – papillary form.

9 years… since I declared myself a “cancer warrior goddess”.

On January 5. 2011 I rolled in to a Johns Hopkins hospital operating room with Dr. Ralph Tufano and his expert team of surgeons awaiting me. From what I understand my surgery was atypical, intensive and extensive. Geez, I guess I was an over-achiever!

I chronicled my journey – including post treatments and all the ups and downs on this blog. You will find those writings here:

Click here for Thyroid Cancer blogs by Louise

Thyroid concerns?

Let me do the education part of my annual missive. These are my recommendations for those who may ponder if they, too, have thyroid issues /cancer. And what to do if you hear those words that are never easy to process – “You have cancer”.

First, please read the warning signs of Thyroid Cancer. You will find them here:

WARNING SIGNS OF THROID CANCER

Diagnosis of thyroid cancer? Do your homework. Ask questions. Find support. Don’t be shy and certainly remember to advocate for yourself!

Keep good records with a file folder – you will be getting a ton of paper from insurance agents to physician visits.

Write a journal. This can be your safe place to express all the thoughts that will be racing through your head – especially at 2a.m.

Have a theme song! You may think I am crazy – but I had a theme song and to this day I would like to thank the Black Eye Peas for releasing the tune ” I Gotta Feeling. This version with a flashmob during the taping of an old OPRAH show kept me smiling through your treatment.

Give yourself permission to grieve. Give yourself permission to be angry. Give yourself permission to eat chocolate and ice cream.

Have questions? Comments? Want to share your experiences? Feel free to do so in the comment section below.

Tweet me your comments too.. I am @LouiseASL

Time to give thanks…

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I love November. First, it is that time of year where the ocean and sky take on wonderful hues here in Southern California. The air is a bit crisper and some days, like today, we have “actual weather”. I am typing this blog while it is raining with impending thunderstorms. A rarity here in SoCal!

November also forces me to slow down and take count of all the wonderful people and opportunities I have in my life. Starting with Hubby. This week we celebrate 32 years of marriage. I like to keep our personal life fairly private – so let me just say that I am grateful for him – every -single -day. Of course, the rest of my family, including our two “offspring”, are amazing, Yes, I am bragging, as I hope all Moms do, when it comes to their kids – young and grown.

I am grateful for a group of friends that keep me grounded, busy and laughing. I have the privilege of calling some very talented, interesting, smart and spectacular people my lifelong friends. Sadly life gets busy – right?! So… even though I don’t see some folks on a regular basis, I hope they know I am a phone call or email away.

I am thankful for good health. I have chronicled my cancer journey many times on this blog. Feel free to read my story about survival by starting here, if you wish.

If you have ever met, Bayla, our 6 – year old Rhodesian Ridgeback mix, you will know why I adore this dog and am grateful that some “force” brought us together. She is the light and comedian in our home. This week she received a few new toys – including a creative gift from a pet company – the Smart Dog pull toy.

Full disclosure – Our dog is spoiled. I am to blame.

Which leads me to my next reason to be thankful …the privilege to work as a freelance digital media marketing specialist with super clients. Never underestimate the ability to work as a freelancer – which allows people, like myself, to work with a flexible schedule and write my own “office rules”.

Lastly, I am grateful to those who serve in positions that keep us safe, protected and able to live with freedom and liberty. It does not go unnoticed that while I sit at my Thanksgiving table with my family there are scores of families that don’t have all their loved ones joining them as they are working to protect and help all of us. So, to the individuals and families of those who serve in the military, medical/ caregivers or as first responders – thank you, thank you, thank you!

Anniversary #8 – My Journey with Thyroid Cancer

Published on by LouiseSattler2 Comments

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

Published on by LouiseSattler3 Comments

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

Cycle for Survival is the movement to beat rare cancers. Our high-energy indoor team cycling events provide a tangible way for you to fight back—100% of all money raised directly funds lifesaving rare cancer research.*

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

Published on by LouiseSattler2 Comments

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

Published on by LouiseSattlerLeave a comment

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.

 

 

Dear New Thyroid Cancer Patient,

Published on by LouiseSattler2 Comments

logo

I am writing this letter nearly three years to the date of my thyroidectomy for thyroid cancer.  I was so lucky to be surrounded by great docs at  Johns Hopkins Hospital  and many others.

I know it  seems like the trips to doctors offices, tests and treatments will never end. Your scared, frustrated and perhaps feeling a sense of doom.  Welcome to cancer- land. Sorry it isn’t fun – just beastly.

For some of you this will be a short “lump” in the road (thanks to Margaret McSweeney who coined that phrase during her own bout with cancer). For others, the road will be long and bumpy.  Here is perhaps a few little suggestions to help you endure whatever path you now have found yourself taking –

1. Surround yourself with those who truly care about you and don’t shut out anyone who genuinely wants to help you because you are too “embarrassed”.   NOW  is a time to accept anyone with good karma to help you out.  (If they have a drivers license and can do errands for you post-surgery – even better!)

2. Delete from social media,  your contact list and your life anyone who brings negative energy to you and yours.   You don’t need them right now.  Maybe never.  Also, expect that some people will believe cancer is contagious and will dump your friendship like a hot potato.  So be it.  Remember stay positive, rid yourself of negative. There are a lot of great people in this world. Those who tossed you aside are not them.

3. Your body will betray you.  The surgery will be only the beginning of the changes to happen to your body.  Expect a shift in how you look.  A few more pounds. A few less pounds. I haven’t met anyone who had thyroid surgery who weighed the same before and after.  Your hair will get all funky for a bit. Your voice may change and you will find other oddities that are either annoying or a bit humorous. Just go with it!

4. Ladies – retail therapy for new scarves is a must!   Indulge and don’t go too cheap – you want the kind that look fashionable but don’t scratch or make you sweat.

5. Men- scarves can help you out too. So can turtleneck sweaters, etc.

6. Or… wear that scar proudly!!

7. If you have a voice problem – go ask your doctor for recommendations to speech therapist who work with voice disorders.  You may need help with your vocal quality (I sounded like James Earl Jones for about two months, frankly!). Also, don’t be shy and discuss with your physician any of your concerns. You paid him/her big bucks to get the cancer out- and you want your monies worth!

8. Accept that you will have a whole host of emotions, from sad to laughing for no reason.  Let’s face it – cancer is absurd!

9. Take a break. Even if it is to have a mini vacation at the local Holiday Inn Express for one night.  Bring chocolate for medicinal reasons.

10. Celebrate your NEW life.  It is not all bad. You have learned some valuable lessons and will learn many,  many more. Most of all – every day is IMPORTANT and there is no room for EXCUSES.  Now is the time to re-evaluate what  you want to keep, change and add to your life.

11. Here is a link to many more of  my cancer related posts)

 LASTLY… Know that I and many more thyroid cancer survivors are in your corner.  Good luck and have a great life!

HAPPY NEW YEAR!

~Louise