Category: cancer

My Year of Learning How to Kick Cancer to the Door

Published on by LouiseSattler9 Comments

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.

A CASE OF IDENTITY THEFT

Published on by LouiseSattler5 Comments

I have been the victim of identity theft.  Not the kind that steals your bank account numbers or my pay pal account, but that which has taken me.. the person.  You see Mr. #$%! Cancer  decided to steal my identity about the same time that I had to divulge having Mr. #$%! Cancer, at all.  From that moment on my identity was not mine, but his.  Now I am the wife/mother/sister/daughter/friend/co-worker/ etc. with cancer. DAMN!

So, I am going to do something about it.  I have decided to now declare that I am DONE being a cancer patient. It is gone.  The beast has been zapped out of me with high doses of radioactive iodine.  Only remnants of this nightmare is an impressive case of laryngitis and a scar.  Oh well… they are my war wounds.  Now please.. permit me to have my identity back and stop staring at my neck.  I really want to revert back to the “old me”.  The one where I get to tell bawdy jokes, shop til I drop, eat lots of chocolate and watch more movies in a weekend than most critics with my family.  I want to walk freely without my scarf and not have to explain each time I pick up the phone who I am and why I sound so “sultry”. And most of all I don’t want to breathe another word about Mr. #$%! Cancer to anyone who doesn’t get paid to hear my woes.. so that means only Top Doc and I will be discussing the identity stealer and everyone else can stop.

WHEW.. that felt good.. Now know that I thank each and everyone of you for letting me rant this week.  And if you ever wonder how you can help others who are fighting the beast here are few tips that I have generated and I also have had received from others who had their identities stolen, too…

1- Help the person who has had their identity stolen by offering services.  Flowers are nice and welcome but also consider giving of your time such as driving the kids home from after school events, grocery shopping or picking up prescriptions.

2. Don’t talk about the person with Mr. #$%! Cancer in front of them as if they aren’t there. And, please don’t talk about all the people you know who have had to deal with Mr. #$%! Cancer or who have died.  Seriously.. everyone I have connected with who has been fighting the beast has said that they are not helped by hearing other war stories.  Especially when the outcomes were not good.

3. Don’t do nothing.  I have been really  lucky that so many people reached out to me and helped me through my process.  Other people, however, tell me of their experiences which are far less “blessed”.  I have heard stories of friends who stop calling because Mr. #$%! Cancer was just too sad for them to deal with and calling  to offer help was too hard. (Well isn’t being a  true friend about taking the good, bad and the ugly?) I advised these people to press the “Delete” button with these so called “friends”.  And that means to delete them on Facebook, too.  Friends who don’t come to help you during troubled times don’t deserve to be privy to your life .. at all.. just saying.

4. Get help.  You can’t do it alone, so reach out to those who can help you and share similar experieces.  I was lucky to have connected with a super organization called Dear Thyroid. They helped me in a way no one else could.  I am indebted to them. Each person with their own situation should reach out.  Your family and friends can only do so much.

5. Lastly, laugh, learn and leave the anger behind.  Keep your eye on the end of the tunnel and don’t get stuck mid-way.  It is sooo easy to get stuck because of feeling the perpetual feeling as if you have been robbed. You can only be a victim if you allow others to treat you as a victim.  I refuse.

Thanks for reading and helping me to get my identity back.  Now go have a groovy week….

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SIGNING FAMILIES has been “on fire” now! But, we need to continue to ask for votes as we are still trying to gain as much attention as possible in order to help families and children who use ASL to communicate.  To vote, simply press on the ICON below. THANK YOU!!

GEARING UP TO GLOW

Published on by LouiseSattler4 Comments

Well, it has been almost exactly three months since my neck was cut open by Top Doc to get rid of thyroid cancer (THYCA).  Since, that time I have managed to keep myself busy by tweeting like a “mad woman” about my Twitter Charity Scarf Campaign, filming PSAs, speaking at MacWorld, filming the Chronicles of EMS, baking loads of cookies for college kids, and much more…..  Alas… it is the time for what I hope is one of the final steps in ridding for “GOOD” this THYCA…the radioactive iodine treatment (RAI).

Now for those of you who don’t speak THYCA– this is a treatment that begins with a funky low-idoine diet and ends with you drinking some radioactive goop which is suppose to kill off any microscopic cancer cells in  my  body that Top Doc might have not seen during surgery.  All in all, it is suppose to be a much easier treatment then enduring chemo, which is not the plan for this type of cancer. (And my heart goes out to those who are undergoing chemo.)

So, I am nearly in week two of the RAI diet.  Which means if it is in a bag, can or restaurant I probably cannot eat it.  I can eat all the fruits and veggies I want.  Black coffee, no problem.  But….nothing chocolate! And.. No  dairy or breads-except for Matzo. And note the irony has not escaped me that this diet will end about the same time frame as Passover begins. This year I bought unsalted matzo- by the six-pack! OY VEY!!  I will say that I discovered some yummy fruit and nut bars by Larabar that are all organic with no other “stuff” –  They tasted so good I called the company twice to make sure I wasn’t cheating on the RAI diet..

After I get my RAI treatment I will be glowing… and in solitary confinement.  Don’t feel sorry for me. I have outfitted my “suite” with tons of kids toys like JENGA, PICK UP STICKS, jigsaw puzzles and added in to the room some fun trashy novels.  I also have every DVD and VHS in the house that was an award winner or has a brat packer in it!  Plus, twenty episodes of NCIS await me on the DVR.

But, here is the one draw back… I may not get to use my laptop or iphone….. If that happens know that I will have groovy hubby checking my “social media stuff” and passing me notes through the door…

Oh well… at least when I get to go back “online” I will be able to order chocolate and ice cream and a pizza and ……….

I conclude with a HUGE thanks to those of you who have been voting for SIGNING FAMILIES on the STARTUPNATION.com competition.  According to the “meter” we are almost HOT!!  Please continue to vote so we can help people to learn ASL and continue to build communication bridges one SIGN at a time!

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Can a Prescription for Chocolate, Italian Ices and Laughter be Bad for You?

Published on by LouiseSattler4 Comments

Hello and thanks to all who follow this blog and have been of tremendous support during the past weeks of my new role as “Cancer Warrior Goddess”.   I am pleased to announce that my self prescribed usage for medicinal purposes of  chocolate, italian ices and laughter were just the right ingredients to kill off enough cancer cells to make me up and running again.  I simply need to swallow some hi- test nuclear gizmo to eradicate whatever little varmints are left in a couple of months. With any amount of luck (and chocolate) I will be making the Cancer Free Victory Dance sometime in late Spring!

Anyway, back to my “prescriptive” care.  For the first time in my life I have given myself permission to eat as much chocolate as I want.  I lost weight this week.  Evidently if you balance a diet of chocolate with italian water ices then you have a sound and effective diet plan.  Laugh while chewing and you are really burning calories by the dozens.

I also found out some other funny stuff this week.  Since, I have a hoarse voice (post surgery complication to subside in a few more days)… I have resorted to signing more.  No biggie in this family.  Also, I whisper to those who don’t sign when my voice is really hoarse.  Now I need to ask….why do people insist on fake signing or whispering back?  I think it is hysterical to watch this set of human behavior.  Whole teams of doctors and nurses trying to “fake” sign is a riot!  Especially when you understand ASL and can “read” what nonsense they are “saying”.

And lastly, I found out the “junior doctors” are adorable and quirky.  Earlier  this week I had a post op appointment with my Senior Top Doc, Junior Doc and two “wanna be, but not fully there yet- docs” (notice they are docs with a little “d”).  The two wanna be docs didn’t say a word.  I don’t think they blinked either.  Somehow they looked scared but ended up following Senior Top Doc … Hmmmm.  Anyway- back to why Junior Docs are adorable… my Junior Doc had weird terminology and “explanations” of my symptoms.  For example, when I described post surgical neck pain he answered, “Feels like you have been hit by lightening?”.  Well, let me think about this.  How many patients, who also have thyroid cancer, ALSO are hit by lightening and come to this practice?  Please tell me that “Thyca” is not a prerequisite to being hit by a thunderbolt!  When I suggested that the pain was more like a spasm and perhaps the feeling of a “bee sting” he thought that was by far a better explanation.  I guess a course in “descriptive terms of patient symptoms that are acceptable, relatable and actually possible” should be added to Junior Doc’s curriculum.  I can only hope.  If not, I may slip him a few “key phrases” hidden in a chocolate wrapper.

Have a great day and thanks for reading!