Bringing Sexy Out of the Thyloset

Most of my friends and family are going to look at this post title and picture and be like, wtf!?!  Allow me to explain.  In the course of searching the Web for others in my situation, I found this wonderful group of folks on a Web site called Dear Thyroid.  Here is a description of the group...

"Dear Thyroid is a thyroid support community and literary brand. Our goal is to connect patients with each other, to create awareness for thyroid diseases and cancers, and to give all thyroid patients a voice. We come together as a united front to invoke change on behalf of thyroid patients worldwide. Thyroid patients are invited to submit letters to their thyroids, thyroid rants and raves, and other literary creations. Help us to create awareness for thyroid diseases and cancers by wearing your disease on your sleeve and by requesting one of our free awareness bands. Visit DearThyroid.org to learn more!"

Awesome, huh?!  As for the pin-up picture, check out http://dearthyroid.org/dear-thyroid-pin-ups/ for an explanation.  And so, with the month of September being thyroid cancer awareness month and all, Dear Thyroid is hosting a tour of blogs by folks who have or have had thyroid cancer.  I love these people!!!  So, I asked to participate in the blog tour and am featured today, September 17, 2010! w00t!  (Thanks, Joanna, for all your encouragement!)

Here are the questions I was asked to answer:

• What kind of thyroid cancer were you diagnosed with? How many years have you been a
survivor?

I was diagnosed with papillary thyroid carcinoma about 3 months ago.  After a total thyroidectomy about 3 weeks ago, it was found that there was no metastasis (spreading) of the cancer to my lymph nodes, the extra nodules found on the thyroid were benign, and the original cancerous nodule was completely encapsulated.  What does this mean?  No radioactive iodine treatment (RAI)!!  Hooray!

• September is thyroid cancer awareness month. What does that mean to you?
Why do you think awareness is important? How do you spread awareness?

Well, according to recent statistics given on the Thyca Web site (www.thyca.org), thyroid cancer "is expected to reach a new record of 44,670 people newly diagnosed (with 1,690 estimated deaths) in the United States in 2010."  And most types of thyroid cancer respond so well to treatment, that if you can catch it early by doing regular neck checks (know your throat!), you can sure save yourself a lot of crappiness!  I was super lucky we caught it so early; if it hadn't been found for a couple more years, the cancer might have expanded and metastasized by then, requiring RAI.  

I've attempted to spread some awareness by printing out and posting a copy of one of Thyca's thyroid cancer awareness flyers on the bulletin board at my office and I'm participating in this blog tour.

• Many thyroid cancer patients have been told, “If you have to get cancer, thyroid cancer is the one to get.” What do you think of that statement? When you’re told this, how do you respond?

Frankly, I do feel lucky that it was papillary, as compared to other, more tricky forms of thyroid cancer, or leukemia or a brain tumor, etc.  However, what most people don't think about is that removing a major endocrine gland that regulates most of the other hormones in your body and risking the parathyroids is no walk in the park.  Once it's gone, it's gone.  There ain't no transplant replacement option on this puppy.  We rely on the pharmacy for replacement T4 and/or T3 for the rest of our lives or become vegetables (literally!).  We become extremely vulnerable in the face of disaster, travel, or any situation that would separate us from our lifeline.  Additionally, those whose parathyroids never recover from the surgery spend the rest of their lives playing the unpleasant calcium intake balancing act: how to eat enough calcium to get it in the bloodstream without suffering excessive calcium deposits in other parts of the body, kidney stones, etc. 

• Dear Thyroid is constantly working to dispel the myth that thyroid cancer is the good
cancer or the easy cancer. What other myth would you like to dispel regarding thyroid
cancer?

I'm not really sure what other myths there are about thyroid cancer.  Frankly, I don't think 95% of the population even knows what a thyroid is!



• What one thing would you tell the world about thyroid cancer?

I don't think this is particular to thyroid cancer, but perhaps applies to anyone who has a life-threatening illness.  I was stunned to find that the most difficult and draining part of having thyroid cancer was telling people I had it.  Although it was fascinating, as each person would respond differently to the news, it was exhausting because I could never tell how they were going to respond.  Some burst out in tears and I had to console them, some want to know every single detail about everything relating to the cancer. (Unfortunately, a lot of going through cancer is not knowing what's going on and preparing for a test or treatment that you have to wait on the results for.  Waiting. Hoping. Waiting.)  Others become very uncomfortable, some suddenly become super helpful, some can't take it and completely avoid you. 

I'm not saying these are bad reactions--people care and some have strong reactions, and you never know what kind of experiences they've had with cancer before.  What I'm saying is, if someone tells you they have cancer, please try to remember that they are going through something *huge.*  Try not to burden them with your own cancer baggage--they've got enough on their plate to deal with.

• What advice would you give to a newly diagnosed thyroid cancer patient?

Get a great surgeon, who does *a lot* of thyroidectomies and knows how to carefully spare your parathyroids!  YOU ARE NOT A TEST DUMMY.  Travel a long way if you have to.  Do what you must.  Your future quality of life depends on a skilled thyroid removal.

• Do you have a funny thyroid cancer-related story you are willing to share?

An amusing thing (to my kids and me) was the "C card" (using cancer as an excuse for things).  We had a running joke about using the C card for just about everything.  I would ask, "Hey, could you get that for me?  I have caaaancer."  <said in a pitiful voice>   My daughter woke late for school one morning and I joked, "Let's use the 'C card'--just tell them it's because I have caaaaancer."  Another time, "Oh crap, I forgot to move the clothes from the washer to the dryer.  Probably cuz I've got... <by now, eyes are rolling> ...caaaancer."

Surgery Day Recount

August 30, 2010.  After checking in to the hospital and receiving a personalized wristband (it was either that or a personalized luggage tag, but I don't travel much), we went up to the surgery waiting room.  They called me back, verified my entire medical history and asked me to change into this very fashionable outfit, which included rather scratchy, gray socks that were printed on both sides with a slip-proof pattern and were surprisingly comfortable; a high tech nightgown with quick release seams and an air conditioning system;

and a very chic, blue mesh beret.

Then an I.V. was inserted into the thumb side of my wrist, like a sidecar vein.

A very nice gentleman in a jungle-print scrub cap hummed a calming tune while pushing me, with mom, dad, and Scott (my boyfriend) in procession, down to the surgery roller-bed starting gate.  My surgeon, Dr. Goicochea (goy-koh-CHEE-uh), bopped in and made sure we were all on track with what was happening.  The anesthesiologist came and did the same, and then injected an amnesiac into my I.V. (after I gave everyone a last with-thyroid hug) and pushed me off to the O.R.  The last I remember, we were chatting merrily as he pushed me down the hall.

I woke up still on a roller bed and nurses were asking me to carefully move from the bed to this nice, big, comfy recovery chair.  I expected a sore throat from being intubated and some pain at the incision site, but they must have given me something super good to carry me for a few hours, because I was fairly comfortable.  Then Mom and Scott came around the corner and joked with the nurses and me a bit.

Other than a constant, low-grade nausea, things were blurry until getting into a wheelchair and being wheeled to the car.  The ride home was pretty rough, as I was really nauseous by then, but we finally made it home and got me situated in a hundred pillow prop.  Narcotics magically appeared and I was delighted that they were a bright pink color that Hello Kitty would certainly approve of. >^,,^<

Other than a brief freak out with the pins-and-needles finger and thumb tips and lips, my parathyroids going AWOL (quickly alleviated with an extra dose of calcium), the rest of the day was all about swapping out cold packs and gagging down sets of horse pills.  What an adventure!

Playing Chess with Symptoms

Recovering from surgery is really a lot like playing chess.  (Ok, so, to be honest, what in life is NOT a lot like playing chess? lol)  You take a look at all the player positions in your situation and try to figure out what you can do to keep ahead of the game.  Currently, winning is all about being able to sleep, and I'm happy to say that Thursday night, I finally achieved check mate!

You wouldn't think that simply sleeping would be such a challenge, but, Oho!  It is!  Here are the issues and how I've resolved them, so far:


Situation Impeding Sleep:  Frequent doses of medicine.  After seeing that there were 2 additional nodules on my thyroid when it was removed (one on each lobe, as well as one on the isthmus--middle section), to prepare me for a Radioactive Iodine Treatment, the surgeon switched me from the once-a-day Synthroid (replacement T4 thyroid hormones) to Cytomel (replacement T3 thyroid hormones), which needs to be taken twice a day, 12 hours apart.  Additionally, he put me on mega doses of calcium, to be taken 3 times a day (please read Little Lentils of Calcium Happiness, below); however, I've been having symptoms of low calcium (pins and needles/numbness in finger and thumb tips and lips), so we added an extra dose of calcium.

Counter Move:  Because calcium interferes with the absorption of thyroid hormones, it shouldn't be taken within 4 hours of taking the Cytomel (T3).  Foods made with soy may impede thyroid hormone absorption, so should not be eaten within 2 hours of taking T3 or T4.  This makes the doses spaced out widely, but we arranged the med schedule so that I can potentially get 5 hours of uninterrupted sleep.  Here is the current schedule:

6am - Cytomel (T3)
8am - 4pm - can have foods/drinks with vitamin supplements (smoothies, etc.) or soy
10am - Calcium (1200 mg)
12pm - Calcium (1200 mg)
6pm - Cytomel (T3)
8pm-4pm - can have foods/drinks with vitamin supplements (smoothies, etc.) or soy
10pm - Calcium (1200 mg)
1am - Calcium (1200 mg)


Situation Impeding Sleep:  Nausea

Counter Moves:  1) Mom realized that some of my initial nausea and headaches were probably being caused by the extra minerals in the calcium supplement we originally bought.  She then bought me a calcium supplement with as little extra stuff added as possible, and my headaches went away and the nausea was reduced.  2) The Darvocet was also making me nauseous (and very itchy).  I finally decided to go completely off it, and was surprised to find that I wasn't in as much pain as I thought.  3) Keeping a reusable gel cold pack on the back of my neck and over the voice box area of my throat really helps--even a cool, damp, lightweight cloth helps.  4) Eating blended frozen drinks with a spoon seems to be the best for instant relief.*

*Peanut butter, heavy dairy-based foods (ice cream, etc.), bananas--anything that leaves a sticky, slimy, or gooey residue--makes the nausea worse.


Situation Impeding Sleep:  Pain at the surgery site.

Counter Moves:  1) The hundred pillow prop.  (Keeping in an upright or mostly upright position is extremely helpful--it reduces the blood pressure in the chest and throat.)  2) Keeping the pain under control with meds, as needed.  3) Keeping reusable gel cold packs on the incision site, continually.  I rotated 2 long ones.  The best kind was the one that is blue on one side and clear/white on the other and are used to wrap around an ankle or wrist.  I folded it in half, with the white side out, and tucked the rolled side gently into the crook of my neck to help with the nausea.  I also used a small "Peas" pack (it has a clear cover and blue and clear gel beads inside) for the back of my neck to help with nausea.  4) Consciously keeping the neck and shoulder muscles relaxed (see Neck and Shoulders Loose like a Noodle, below).  5) Reiki or Healing Touch, as much as possible.  6) I am finding the Young Living essential oil blend, Pan-Away, very helpful.  Plus, it smells fantastic!  7) Cooling and healing imagery is also very helpful.  I imagine my whole neck and chest area resting in a small, cool pool of fresh spring water.


Little Lentils of Calcium Happiness--Parathyroid glands are these 4 cute, little glands that my surgeon described as lentils, that has to be very gently peeled off the thyroid gland and left in the neck after removing the thyroid (see http://www.medterms.com/script/main/art.asp?articlekey=4773 for a nice visual).  Parathyroid glands control the calcium and phosphorus levels in the body.  If the glands are damaged or removed, very unpleasant things happen!  Even if they aren't damaged, they tend to go into temporary shock from the surgery for a couple weeks, so my surgeon always has his patients take mega doses of calcium after the surgery until it's clear that the little lentils have recovered.  A few hours after my thyroidectomy, I felt very strong and distinctive pins-and-needles numbness and tingling in my finger and thumb tips and lips, which are typical symptoms of the parathyroid not working.  Within about 15 minutes of taking the calcium, the pins and needles went away.  Thank goodness this is such an easy thing to treat!


Neck and Shoulders Loose like a Noodle--the surgeon told me that one of the main causes of pain after a thyroidectomy (or a thyroid biopsy) is a person's instincts to keep the neck area still protected.  Holding the neck and shoulder muscles tight and still is exhausting and, although it helps reduce pain from movement of the surgery site, excess/unnecessary muscle tension quickly causes an incredible amount of pain.  To prevent this, frequently, consciously relax any muscles that do not need to be tense.  It's more challenging than it sounds!  Very gently and slowly rotate the shoulder muscles (without raising the arm) and don't move it in any way that causes pain to the incision site.  Very gently and slowly rotate your head and neck in different directions to encourage muscle relaxation.  Also, consciously allow your shoulders to relax and settle.  Breathe slowly and think relaxing thoughts.

*EX* Thyroid

Woo hoo!  I'm now thyroid free!  I have this image of a little ghost thyroid fluttering around my head now and then (the thyroid gland looks very similar in shape to a butterfly) or floating on the end of a little ghost balloon string from my throat.  It went peacefully and I wish it well, cute little kipper.

So, the surgery went very, very well--smooth as silk.  I'll write about my experiences later today or tomorrow. I'm in rest and recuperation mode right now, but just wanted to let everyone know that it was a safe and successful procedure and that I'm home recovering comfortably.  Sending a call out to my new friend, Darvocet-- oh yes, I'm feeling just fine! (lol)

Ok, I'm off--got a hot snooze date with my mattress and about 300 pillows.  God, I love pillows. 

Just the Facts, Ma'am!

LJ's Two Month Whirlwind Tour of Medical Appointments En Route to a Thyroidectomy
(Also known as "Can anybody spare a few extra hours of personal leave?")

6/15/10 - Saw new doctor, who recommended thyroid ultrasound.
6/28/10 - Thyroid ultrasound
7/1/10 -  Called in to review ultrasound results with doctor, who ordered biopsy ("fine needle aspiration" or FNA)
Spent a couple weeks collecting ultrasound results, orders, and reports to hand carry to a clinic that accepts my insurance for both the biopsy and the pathology (lab evaluation).
7/28/10 - Biopsy
7/29/10 - Doctor who did the biopsy called.  Papillary thyroid carcinoma.  Evidence of lymphocytic thyroiditis (Hashimoto's Disease).  (Will explain in a later post.)
8/6/10 - Saw surgeon
8/16/10 - Pre-surgery appointment.  EKG (aka human marionette).  Peed in cup.  Gave blood.

Surgery date: Monday, August 30, 2010.  Report to hospital at 8:30am, surgery 10:30am.  Outpatient surgery ("same-day" surgery--no overnight).

Wheeee!  Nothing like a roller coaster ride with reality!

Zip Lock Bag of Humor

So I texted Mom, asking if she had any favorite resources for cancer humor from when she was kicking her breast cancer's butt. She wrote back, "No, but I did have my zip lock bag of humor :)". "Zip lock bag of humor?" "Yeah, if I started feeling low I could just whip it out and I'd start smirking again. Anything that makes u laugh - put a copy in ur zip lock bag."

Lol! That's brilliant! I ran and grabbed a small zip lock bag and threw in the Mexican wrestling thumb masks I just bought. I'll keep you posted about further additions. :)

I'm still on the search for a really hilarious thyroid cancer t-shirt. But funny is not one size fits all. My favorites so far are DUDE - where's my thyroid? and Cancer Survivor *thyroid not included. But these are really just amusing, not hilarious. There's one t-shirt design out there that's all a bright green and says "Pee on thyroid cancer" and has a drawing of an alien peeing. Honest. I'm fairly certain this references a Radioactive Iodine treatment. I love the inappropriateness of it, but don't really get it. Could someone school me on that one?

T Minus 8 Days

In T minus eight days, my thyroid will no longer be living in my throat--it's being evicted for harboring cancer cells without paying a pet deposit.  I wonder what it feels like to have a throat without a thyroid.  Do you get phantom T3 release sensations?  Right now, that cute, little butterfly-shaped gland feels like a Nerf golf ball tucked in my throat. 

So, what's with writing a blog, other than everyone and their goldfish is doing it?  Perhaps the possibility of losing my out-loud voice has inspired me to find an alternative.  I mean, sure, I'm fluent in American Sign Language, but what good does that do me when no one around me signs!  I'd just be mumbling to myself all the time without anyone understanding what I'm saying...which, according to my kids is exactly what I do now, so maybe that's not so bad.

I'm not planning to let the lovely little nugget of joy in my throat take me out.  However, it's best not to underestimate the power of mutant thyroid cells.  It's time for me to listen and learn and keep my eyes open for the opportunities that this kind of experience can bring.  This blog is my visual voice and opportunity to share my thoughts, feelings, and experiences with anyone who may be interested in hearing about them. =)