Thyroid Treatment Process and Timeline...

As best as I understand it...

Step 1: Thyroidectomy. Thursday, July 27th.
Impact: I’m told that I’ll be back at work w/in a few days (probably Tues or Wed of the following week. No guarantees of course). One issue is that my vocal chords (due to proximity to thyroid) may be sore and thus I will be limited in my talking abilities. I know, a net positive for all of you.

Step 2: Iodine Free Diet (target begin date approx. August 13th)
Impact: 2 weeks of significantly less than 100% energy
Explanation: I won’t be able to eat anything that has iodine in it (salt, fish are two of them, but there are a lot of things, I’m told). What this means is that I will be exceedingly tired (sounds like a carrot and celery existence) and won’t have as much energy as I’d like. Long days may be out of the question.

Apparently, the thyroid has a unique ability to absorb iodine. This is the first part of a 2 step process where the we starve the body of iodine so that any remaining thyroid cells are hungry for iodine.

Step 3: Radioactive Iodine (target date: end of August)
Impact: 2 days of hospitalization followed by a few days of limited contact w/the outside world.
Explanation: In an effort to remove any remaining thyroid cells, this stealth/nuclear iodine is taken via pill/liquid. The remaining cells are tricked into absorbing the iodine they crave and then destroyed from the inside. Kind of cool, eh?

I’ve asked if there’s wi-fi in the hospital (the Dr. said no one had asked that one before), but using a PC [for fear of making it radioactive-although that could be a good reason to get a new laptop J] may be forbidden. Basically, a few days of reading, watching NetFlix, and not being able to help around the house w/the kids. Hmmm….maybe I should do it for a week or so.

Step 4: Recovery (1st part of September)
Impact: Apparently it takes a week or so to get back to “normal” as the body adjusts to the TRH (Thyroid Replacement Hormone).

Conclusion
Not your typical summer vacation, but since insurance (thankfully) picks it up, much more economical. Surprising that more people don’t do it.

A visit to the Endocrinologist...

New guy is MUCH, MUCH better. Funny, nice, and knowledgeable. Stepped back and really explained the whole process. What’s better is he’s offered up a solution where I don’t have to become hypothyroid and consequently, I won’t be dragging as much during the iodine-free diet stage (which kicks off tomorrow morning-bummer!)

Tamar didn’t come with me, but that’s ok, I recorded most of the conversation in Microsoft Office OneNote, it was pretty cool. The Doc was impressed, “that’s the first time that’s ever happened.”

For you medical geeks, here’s the way it works, as I understand it.

The normal functioning Thyroid generates a hormone called Thyroidglobulin (TG). For people who don’t have a thyroid, well, you shouldn’t have any of it. If you do, however, that’s an indication that there are some functioning thyroid cells…which you don’t want to have.

The goal, then, is to have a situation where you negative for Thyroidglobulin.

Now, there’s a hormone, generated by the pituitary gland called TSH-Thyroid Stimulating Hormone, which, surprisingly enough, stimulates the hormone. When you don’t have a lot of TG, you have A LOT of TSH since the body is saying, “hey we need some TG.” They are inversely proporitional.

When a patient goes through the Radio-Iodine process, the doctors want a very high TSH level so that any remaining thyroid cells are stimulated to crave iodine…which they get in a big, nuclear type of way.

After that, you take Synthroid to get your TG back up to its proper levels and theoretically, you’re in good shape (though artificial). As a result of this process, however, there’s a tabula rasa (clean slate-still remember that from 7^th grade Latin) so your physicians can track you over time and determine if recurrence is an issue.

Bottom line—this guy is good, very good. Knows his stuff, great bedside manner, and a good attitude.

Still waiting on final dates, but we’re looking at the week of September 10^th.

Cancer...why not me?

I was diagnosed this morning with papillary thyroid cancer.

I don't like to be alarmist-from what I'm told it's very curable, but I don't like to be secretive either.

Quick Background
Right before Mother's Day I felt a lump in the back of my neck. It was sort of cyst-like and after a few days of it not going away, I got a bit concerned. A friend of ours who is a nephrologist was at our Mother's Day dinner. He felt it and advised me to get it checked out.

The doctor felt it and said that it was probably just a swollen lymph gland and there was nothing to worry about, but just to be on the safe side, "do you want me to examine your thyroid?"

"Sure," I responded, not even sure where the thyroid was located and certainly having no idea what the thyroid does.

She felt it and said, "the right side of your thyroid feels a bit larger than the left. I'm recommending an ultrasound."

About a week later, I had the ultrasound and they found a "complex nodule" (or at least I think that is what it is called) and recommended a biopsy. 20% of the nodes are cancerous, I was told. My initial reaction was “Why me?” but that quickly changed to “Why not me?” I figure if there are 10,000 cases diagnosed each year in the US, who’s to say that I wouldn’t be one of them? That helped me begin the process of assimilating and synthesizing the information.

A few years ago, I read a book by the Dalai Lama called “The Art of Happiness” where he suggests that you should prepare yourself for difficult situations by envisioning what you will do when you face them.

This morning, I went in for a fine needle aspiration biopsy. The doctor was very nice and she pulled out the specimen from my neck. She wanted to validate that enough of a sample was taken, so she put it on the slide and looked under the microscope. I asked to look as well.

Of course, I had no idea what I was looking at, but had a good time anyway peering through the lenses.

She turns to me and says, "do you want me to give you the diagnosis now or wait until I make the final report on Thursday to your doctor?"

"What kind of ridiculous question is that?" I asked myself. "Uh, I think I'll go with right now."

"You have papillary cancer," which caused a shiver to go down my spine, of course, “but it’s highly treatable.”

For the past month, I was preparing for those words (in between early morning wake-ups with Erez and all of the other stuff of life) and so I am just going to take it one step at a time. Not worrying about all of the “what if’s” just dealing with the facts that are in front of me and taking the best course of action at each moment.

Just wanted to share the status.

"It was a fluke..."

Yesterday's discussion with the Endo really gave me pause to once again think about the randomness of life.

"It was a total fluke," he said, that we found the tumor when we did. The lump in my neck had nothing to do with it. Had I decided not to ask my friend, the doctor, or not see my own physician, it would have gone unnoticed.

It was caught early, didn't metastasize, and didn't spread. The "magic age" is 45...the tumors start in your 20's and grow slowly. But by the time they are detected, your chances of survival are much lower.

There are 4 types of Thyroid Cancer (with their cancer survival rates after 15 years)

• Papillary (98%)
• Follicular (80%)
• Medullary (40%)
• Anaplastic (20%)

Chief Justice Rehnquist had Anaplastic.

And he says, "so remember when people say, 'ah, thyroid cancer is the best cancer to get,' that it really depends. Just tell that to the Anaplastic folks...80% of them are dead." [all other mortality factors were equalized.]

Basically, I got lucky, very lucky. But before you run to your doctor, don't worry too much...there are only 20,000 new thyroid cancer cases diagnosed per year in the US. 

However, the lesson here is, don't take things for granted. If you think something may be wrong, get it checked out.

Surgery complete...

For the days leading up to the surgery, I was begging Tamar NOT to stay overnight in the hospital with me. I was most concerned that she would be exhausted and be stretched to the limits when I got home between the kids and me.

Well, am I sure glad she was there. I was wrong (again). She was the greatest medical advocate one could hope for.

The day began at 11am when we checked in to the Surgery Center. Eventually, we made our way back to the waiting area where I disrobed and put on a hospital gown. Not any hospital gown, mind you, one called Bair Paws. I LOVED it. Why? For two reasons....first of all, there was a socket where you could attach a hose the blew either hot/cold air out and surrounded your body with the temperature you wanted. It was pretty neat.

I also loved it because it was a great example of teh razor/blade business model. Each gown costs $10 and is only good for one use. Since there is the special socket, the hospital can only buy replacement gowns from the one company. Talk about lock-in!

We had plenty of time there so I was reading (a great book that Tamar got me on Fatherhood for Father's DAy) and listening to classic CD titles like: What's New in Internet Explorer 7; How to Sell Windows Vista; The Top Benefits of Microsoft MapPoint (no joke) and of course, we were chatting about life, etc.

The surgery was scheduled for 2pm, but things were running late and I was still in the OR prep room at 2pm. I was the only patient there and heard the nurses at the station saying something about Excel. I turned to Tamar, "duty calls," and I went over to fix their problem as best I could.

Georgetown is a teaching hospital so I got a lot of attention from medical students and residents, some with great bedside manner, others where some attention needs to be paid.

The anesthesiologists came in and did their work and I was out. Next thing I know (sort of) I am in recovery and EVERY TIME I swallow, I am in a world of hurt (they intubated me) and I feel nauseous. I have no idea what time it is and for the next 12 hours, I'm getting pricked and prodded for blood ever 3 hours or so, I think.

Poor Tamar is sleeping in the chair and she looks most uncomfortable, but she was right there by my side if I tried to get out of bed (which I had to do since my room was like a sauna--the maintenance guy came in at 2am to no avail) and pushing the nurses for water, ice, and blood test results.

The water was a mixed blessing because it was (and continues to be) such a chore to swallow.

The key factor they were watching was my calcium levels because there is an organ called the para-thyroid behind the thyroid that regulates calcium and which can be injured during surgery. If your calcium levels are too low (as mine were and continue to be), there is a risk of heart arrythmia and tingling. The calcium issue was ultimately the cause of the delay in leaving the hospital (we didn't leave until 5pm and there was talk I'd have to stay another day).

I kept drifting in and out of consciousness. I'd received some morphine because my back was spasming since I'd been lying on it for 15 hours straight and my neck (I'm constantly in a position where my chin is basically touching my chest). I'm also on Percoset. Sometimes I'm lucid and sometimes lethargic. It's really tough for me to talk so I can't return the number of very thoughtful calls I've received inquiring about my status. I really appreciate it, of course.

OK, Tamar is calling for me from upstairs (I'm supposed to be in bed, but had to blog :-)...more later.

Bottom line: I'm home, my wife is amazing, my neck is killing me, I'm devoid of energy and there's still a long road ahead of me (they also found a bizarre looking lymphnode which was sent to pathology so let's hope it's nothing serious) and I have no thyroid but a ton of medication.

On Blog Sharing and Thyroid Cancer..

I've been asked a lot about why I feel like it's important or worthwhile to post some of my personal experiences on the blog.

My basic answer is that: I feel like many of us are going through similar experiences. I just want to pull out the common parts of mine, share them, and get your feedback.

Now, obviously, not every experience falls into that category...

Not to be self-validating, but to be self-validating, I share the following anecdote.

An acquaintance approached me and told me that she had been diagnosed with
thyroid cancer. She thanked me for all of my posts on the blog (which she had
read) and felt like she was better prepared for the upcoming process.

I guess I feel like in the challenge that is life, if I can help you think about something in a different way (and vice versa) because of the blog (or in the case of the cancer patient, be better prepared), then the blog has served its purpose.

Thyroid Cancer Comrade...

Walking through the waiting area of the nuclear medicine department, I saw a woman with a bandage on her neck.

"Thyroid?" I asked.
"Yes," she smiled.
"Welcome to the team," I said, showing the scar on my neck. "Looks like you are 2 weeks behind me."
"Cancer?" she asked.
"Why else would I be in a nuclear medicine department?" I laughed.
She nodded. "Don't worry," I encouraged her, "you'll be fine!"

We high-fived and moved on, sharing a common experience that neither of us could have foreseen 2 months ago.

I guess I'm part of another sub-group now (8,000 new cases a year; 250,000 survivors in the US).

Bedside manner...

I know full well that my type of cancer is, in the grand scheme of things, not that big a deal. Doctors who know this, and there are a bunch on my list (though not all), tend to say "you'll be ok."

Now, I may not need or want sympathy, but that doesn't mean I don't like it.

I've noticed that the doctors responses, directly and indirectly, have lacked a bit of the bedside manner, a skill they supposedly foster in med school.

Ranging from, "you'll be fine" to outright dismissive, it's been a bit shocking to see.

Now, maybe it's because when a layperson hears 'cancer' s/he thinks grave no matter what and doctors know that thyroid, compared to other, more serious cancers, just isn't a big deal.

Still, it'd be nice to hear a "it must be tough as a young father to confront the concept of cancer. Fortunately, thyroid is highly curable," or something like that.

A few did say that, but it's been remarkable that not all of them have.

Doctors must hate the Internet...

The beauty of the Net is the democratization of information. Patients can research and understand their own diseases faster and begin the healing process. The danger lies in misunderstanding and/or misdiagnosing causing conversations with doctors to go off on completely irrelevant tangents. 

Perhaps too much knowledge is a dangerous thing?

We slightly frustrated an oncologist yesterday when our line of questioning showed him that we had done some research, but had gotten confused in our understanding of the impact of Thyroid replacement hormones and their potential impact on gonadal function. 

In so many words, he said, “I’m not sure where you found that, but one has nothing to do with the other. There’s no impact on gonadal function.”

“Actually, Doctor,” I said, “isn’t it true that men on Thyroid Replacement Hormone drugs need to have more sex than other men?”

Tamar was on the line in the other room and I could feel her cringe. J

 

Book Review: Adventures of Kavalier and Clay

A chronicle of the early and nascent days of the American comic book industry, The Amazing Adventures of Kavalier and Clay is blessed with some of the most exquisite prose I've come across in a long time.

You really get a sense for the characters-a Jewish Czech refugee who escapes Prague inside the box with the famous Golem, his cousin in Brooklyn who struggles with admitting his own identity, and the daughter of a Surrealist socialite who...well, I don't want to ruin it.

The book takes you through Europe to New York to Antarctica and then back. WWII and the post-war era are the backdrop. I wasn't clear where the fiction started and the non-fiction ended. It was clear that the author was passionate about the subject.

A long (630 pages), but VERY solid book.

It's funny...my cousins Russ and Shira sent this book to me during my thyroid cancer treatment, but I didn't pick up until I saw a teenager reading it a few weeks ago at our friends' house. He recommended it, so it got pushed up on my priority list.

I'm glad he did...and thanks to Russ and Shira for sending it over!

ER Visit on Labor Day

My parents took the kids to the Maryland State Fair today so I had ample time to do some yard work. And I went all out.

Well, at some point, I landed on my ankle in a weird way, but I just shook it off.

About 3 hours later, I was in a world of hurt and I couldn't even walk.

Huge call out to Dr. Ira Rabin who made a housecall and said, "go get x-rayed."

And I've go to hand it to the team at Holy Cross Hospital.

I limped into the ER (and some kind folks let me go in front of them). Within 8 minutes (I was prepared to be triaged for hours...having worked one graveyard shift at an ER before with my brother0n-law), I was in the "Express Care" room and about 20 minutes after that, on the X-ray table. The process, every part of it, was smooth and efficient.

It was actually remarkable. EVERYONE from registration to the woman who wheeled me up to the X-ray tech...just a first class job. You hear so much about healthcare problems (and there are many as I know from my thyroid cancer treatment), so it’s just great to see a team of people (on a holiday no-less) working together, getting the job done, and doing it quickly and cheerfully.

No break, fortunately, just a severe sprain...splint, crutches, and a TON of Advil (4 every 8 hours). Hopefully, it'll only be a few days, but I already have an apprecation for those who can't walk w/ease. It's not simple moving around a 3 story house or even around the kitchen.

Cancer Free Blood Donor…

I gave blood every 3 months for about 13 years.

Then, when I was diagnosed and treated for thyroid cancer, I was told I was ineligible for 5 years.

Last month, the American Red Cross contacted me, saying that the rules had been changed. It was now only 1 year, so I went back and donated my O negative blood and got my sticker and lapel pin. It’s something that always makes me feel good.

More on Loyalty and the 529 plan...

The post on how I feel about my financial advisor generated a email from a very close friend (blog reader, Seth) of ours who is also a financial planner...basically asking, jokingly-sort of, 'where's the love?"

I wrote..."Love doesn't get you ROI."

But then I said...

My current advisor’s transition means that I am going to have move my stuff anyway. While I am not making any promises, I am open to the idea that you might be a fit.

As you’ll see on the blog, I’ve gotten some more 529 advice. Attached
is my most recent statement….and I’m not happy.

The performance hasn’t been very solid at all and I’m wondering if I’m missing out by paying these higher fees (my Ameriprise guy says it’s part of the compensation he gets since I don’t pay him anything.) 5% for every contribution seems pretty
stiff.

For example, what am I giving away by not doing the MD one? I know the tax deduction but the argument is that the Fidelity plan gives higher returns…

Being a friend means that you have a foot in the door, but after that, it’s all business. Fair enough?

So, if you want…take a look at the 529 info, ask any questions you want to “discover” what else you want and offer some advice.

I am VERY impressed by his response...take a look at the comments section for it in its entirety.

Let me know if you want his contact info.

What's interesting here is that the fact that my current advisor is making a change is creating an opening for a competitor. While loyalty certainly does play a role, it does give me a chance to get a 2nd opinion...and if there's anything I learned from my thyroid cancer, it's that 2nd opinions can't hurt.

Mother's Day Random Thoughts...

It was one year ago today that the thyroid cancer saga began.

First Mother's Day without Nana.

“They’re not telling anyone.”

I heard some bad news a few weeks ago. Actually, I discovered it by accident, when a friend of mine let it slip that a mutual friend from college had recently been diagnosed with cancer.

“But,” he said, “they’re not telling anyone. In fact, his mom thinks it should be a total secret.”

Now, it’s pretty well known that I don’t mind sharing my medical condition publicly (see here for thyroid cancer story), but I need some of my introvert friends to explain this approach to me.

Assuming that the medical condition is not because of something you did like shoot up heroin with drug addicts in Thailand or whatever and it’s not your fault at all, why keep it a secret?

If it’s not a secret, your friends (whose help you need), can help you.

What’s more, when it’s a secret, people actually talk about it MORE.

When everyone knows, it’s not news anymore.

So, the “we’re not talking about it,” seems like it defeats the purpose of secrecy since everyone kind of knows anyway.

What am I missing here?

Why blog about your personal life?

Every now and then I’ll meet someone who asks me “why do you share so much about your personal life online?”

(Sometimes I meet people who make fun of me, but that’s a different story.)

Why?

Aside from the fact that I like sharing it, I also like hearing how it makes people feel.

I got a note from Jacob the other day, saying he was unsubscribing from this blog.

I didn’t recognize his name and thought that, perhaps, as is sometimes the case, he was a business associate looking for the Never Stop Marketing blog and, accidentally, had chosen the wrong blog.

“No,” he wrote, “I subscribed back when I was first diagnosed with thyroid cancer and was reading about your experiences. I enjoyed your blog and reading about your family and your other musings. It’s just gotten to the point where I can’t keep up with all the other blogs I read.”

So, for 2.5 years, this random guy decided that the stuff I was sharing was of interest to him.

In some ways, though the comparison is probably not apt, I suspect this is what artists look for.

Affect people you’ve never met through your work.

Feelings on a Bike Ride...

You know that scene at the beginning of "Raiders of the Lost Ark" where Indiana Jones is running to avoid being crushed by that huge boulder?

Every great drama has a similar scene.

If life is a drama, then I had one of those scenes this morning.

I had to go in for some thyroid-related follow-on blood work and the lab is about 1 mile from my house.

After dropping Tungsten off at school, I got on the bike, figuring...it's summer, I am working from home, and the exercise never hurt. By the time I was about 3 blocks from the lab, it was obvious...there's going to be a MASSIVE storm coming through. It's just a question of when.

In an unusual experience for the medical profession, I went in, signed one form, had the blood taken and was back out the door in under about 9, no 7, no 9 minutes.

I got on the bike and scanned the skies.

I had a chance.

I pedaled my heart out, feeling the wind picking up, seeing leaves swirl about on the ground, watching the sky become more and more ominously grey.

On the way, I went by the playground next to Tungsten's school/camp. Today is Carnival Day and the kids were lined up waiting for their turn on the moonbounce.

I am reading a book now at the suggestion of Rachel Milner called Difficult Conversations. The basic premise is how to have conversations with others where you can honestly talk about your feelings so that they are not a hidden obstacle to conflict resolution. It's been an eye-opener for me, particularly the part that differentiates Intention from Impact.  Don't get me wrong, I have a long way to go....

So, the book, I think, has made me a bit more in touch with/aware of my feelings and when I rode past the playground, I truly FELT two distinct emotions. It was a great moment...for me, at least :-)

The first was pride. Pride that I was able to give my daughter an experience like going on the moonbounce. In my travels over the years, it's clear to me that experience is what makes Life great, not things.

And the second was sadness. Sadness that, in all likelihood, this carnival would be delayed, postponed, or canceled by the pending storm.

And I guess there were two more. Curiosity...how would Tungsten handle the disappointment of having the carnival delayed/postponed/canceled. And then, Hope. Hope that she would understand that, like we read every night in "Oh, the Places You'll Go," sometimes Life doesn't work out the way you want it to, but you just need to push on.

I wanted to stop and look for her in the throng of kids, savor the moment, take, as we say, a 'mental snapshot.'

But, I was outrunning a boulder...a lone guy on a bike, trying to make it to the safe haven before the "heavens opened up."

Not 2 minutes after I walked through the door did the thunder crack right over our heads and now, it's torrential.

Coming down to the wire...

If you scroll down a bit and look on the right side, you will see that I posted to the blog 860 times last year.

Like I said, "thyroid cancer was good for ratings' and for content production.

So, this year, with this post, I am up to 811 with 20 blogging days remaining. That's 2.5 posts per day for the rest of the year.

Don't want to force it, but Stewart has put the pressure on.

And now I'm blogging about blogging. Is that blogflation?

How It All Plays Out...

I was thinking about Nana this afternoon while the kids and I were watching a Sesame Street DVD.

Paco yells, out of nowhere, "A car!" and I looked out the window to see our neighbor exit from his Prius.

He looked very tired and hunched over (he's about 60) and I started to think and wonder if he had any clue that his life at this age would be how it is. [We really like him and his wife].

I am willing to bet that he didn't.

Here's how I know.

Unfortunately, one of his sons committed suicide a few years ago. That's not something a parent, I would surmise, thinks about really happening to him. Even if he does (I suppose I just had that thought), you can't possibly imagine how it would feel to have that happen.

Or to have a son killed in the Israeli Army, as our dear friends, Sue and Max Singer had (see the moving tribute they have built around Alex's life here)

Or any number of other ways that the road of life twists and turns in front of you as you move along it.

Poppy didn't think Nana would go before him. I never envisioned thyroid cancer for myself.

I don't know if there's a "trick" other than to expect the unexpected, trite as that may be.

Just something I was mulling about.

Medication Dependent Travel...

This past trip to Israel was my first international foray since my thyroid cancer experience.

That meant, it was the first time I traveled where I had the requirement to have daily medication (synthroid) with me for my survival.

Losing checked baggage therefore becomes a much more serious concern.

I had to bring it all in my carry-on.

Not a huge deal, but one thing that I had to consider prior to packing.