Tag: Johns Hopkins Hospital

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

 

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.

 

 

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