A Day Late and Thyrogen Short (Dealing with the Thyrogen Shortage)

Hypothyroidism sucks.

You know that feeling when your eyelids are taking a trip on the Gravitron and your head is threatening to collide with anything in its downward path--a pillow, a wall, the steering wheel--and the rest of you just aches like the day after that first session at the gym? I usually get this feeling between 3-5pm for a half an hour. Now imagine (or remember) what it is like to have that feeling 24 hours a day for two weeks or more.

Post-thyroidectomy, this is what it is to be like without synthroid. I went into a lot more detail on the experience of hypothyroidism in my earlier blogs. While waiting for my RAI, deprived of synthroid, I had no idea that there was an alternative. No one said anything to me about taking Thyrogen. So my pre-scan experience was quite miserable.

What is behind the thyrogen shortage?

Thyrogen is the medicine used to detect any remaining thyroid cancer (god forbid) in the follow-up RAI scans of patients. It is also the only thing standing in between thyca patients and zombification (I so did not even make that word up). This drug, exclusively owned by Genzyme, appears to be caught up in some kind of horrible monopoly scheme where the company artificially increases the demand by withholding or limiting the amount of thyrogen produced (I think this is called jerkonomics).

I am not 100% sure on this. It is just my impression based on what I've read. Don't get all litigious on me. But what is with all the shortages? I came across a bunch of articles on the 2010-2011 shortage when I was first diagnosed and wasn't even sure what I was looking at. I asked my endocrinologist if I had anything to worry about. He said no. But now, when I am calling to schedule my RAI appointment, I find out everything is being delayed because of the CURRENT thyrogen shortage.

I read an article on Salon.com that argues that these shortages are not limited to Thyrogen and that they are a reflection of the darkest side of capitalism. Essentially Mary Elizabeth Williams argues that drug companies are not making enough of a profit off of expensive life-saving drugs, and without this monetary incentive, are ceasing to produce them without any obligation to inform the public. Yikes! She includes a list of current FDA drug shortages. Big surprise: Thyrogen is on there.

I may have missed this day in Economics 101, but what in our capitalistic legal system allows Genzyme to hold a monopoly on rare lifesaving drugs? Ostensibly it is the Orphan Drug Act, but given that Thyrogen has been manufactured for more than 7 years and the fact that thyca is not all that rare, I don't think it qualifies. And Genzyme is not a company I want my life to be dependent upon. Apparently they use such questionable manufacturing processes as to be under investigation by the FDA, which sounds helpful, but is in fact further delaying our access to these drugs. They also do not appear to be above exploiting the people with life-threatening diseases, charging as much as $150,000 per patient per year for drugs without competitive brands.

Don't get me wrong. I'm quite grateful that treatments like Thyrogen even exist, especially when there were no options before. But something rings false here. Why is there so little media buzz about the current shortage? Has it been long enough for all the objections to die out, the sense of outrage? Did all the angry people get their supply? Or just curl up in a ball and fall asleep?

Genzyme issued this statement regarding Thyrogen's availability in 2012: "We understand that 2011 was a difficult year, and we regret that our constraints will continue in 2012. Genzyme is investing in increasing our manufacturing capacity, and working to reduce the time it takes to release Thyrogen from our facilities."

Is it just me or does it seem like they are pointing fingers? Specifically at the FDA for hassling them? Maybe it is all my built-up anxiety talking, but this is scary stuff. It is bad enough being drug-dependent for life. What if that drug gets taken away? What if we lose whatever is protecting us from having to pay limbs for that drug?

For me, the worst thing about cancer would be to give in to that unavoidable feeling of helplessness. I like feeling in control. My mother is always telling me to "give my problems over to God." The first step in addiction recovery is to admit that you have no control. I guess it's a matter of perspective.

You have cancer. Your life is no longer in your hands. Do you embrace this or run away?

Sidenote: On the official Thyrogen website, the first words to prospective patients (people diagnosed with thyca) are "you are not alone." Does anyone find that comforting?? I mean sure, you don't want to be the ONLY person in the world with a singular disease that no one has bothered to diagnose or treat or even name, but I find the fact that there are so many of us rather disturbing. A great many people get in car accidents too. Try taking comfort in that the next time your car takes on those stupid yellow poles at the bank drive-thru.

Cautionary Cooking: Tips for Low-Iodine or Iodine Free Diet

 It is almost time for another pre-scan iodine diet, and I am preparing by testing out the Thyca book recipes. Cooking is a pretty new thing for me. My mother taught me how to poach an egg, my father taught me how to microwave, and a couple of kids I babysat for taught me how to scramble eggs. My palette is rather unrefined.

As a result, I have always thought of cooking as something overrated and dreary, more 1950's housewife than I ever cared to be. I was an only child until I was fifteen, so I never really got the opportunity to experience the kitchen as a positive communal space, a haven of female culture, as its described in Esquivel's Like Water for Chocolate.

Now that I am subject to yearly radiation scans (sounds cool, but as of yet, no super powers) cooking is a necessity. Unless you have someone in your life who cooks you three meals a day and who would be willing to then adjust these meals for low-iodine standards, you will also have to cook. It is likely your doctor has given you a copy of the THYCA cookbook, or at least a basic list of guidelines and link to the thyca website.

Here are some basic tips on Thyca cooking you may not find in the cookbook:

• Begin cooking a few days before you are scheduled to start your diet. Store up hearty freezer-friendly dishes like stews, casseroles, meatloaf, etc. If this diet is the first after your thyroidectomy or if you are not on thyrogen, you are likely extremely HYPO and will not be up to cooking more complex things like homemade chicken broth. You'd be amazed at the number of recipes that call for chicken broth.
• Hide or dump the foods that would most tempt you to cheat. This is one diet you really don't want to cheat on. Your life, or at least some very expensive medical procedures, could be compromised. Sometimes the "cheating" is not even conscious. I once started the diet with a lovely beef stroganoff recipe and then couldn't eat any of it, because I realized too late that I had added some Tony Chachere's to the mix (love that stuff). I created an off-limits spice cupboard after that so there would be no further mistakes. I also designated his and hers shelves in the refrigerator for the duration.
• Purchase allowable ingredients in advance. Be sure to stock up on allowable spices, especially Kosher salt. This diet has plenty of flavor if you experiment with spices. Peruse the cookbook beforehand to make a list of things you might need. Substitutions are difficult if not impossible, so you'll want staples on hand. Everything but produce will keep.
• Stock up on bananas. This is the one kind of produce that won't go to waste, even if it over-ripens. Bananas are the super-filling ingredient for any kind of smoothie and when they turn brown are great in baked goods like muffins. Toss a few frozen bananas in a blender (with a bit of water), refreeze and you've got a delicious banana icecream.
• Cook in bulk on weekends and stock up on allowable ready-to-eat snacks. Cooking three times a day is exhausting, even if you are feeling healthy. Do not underestimate the helpfulness of snacks like unsalted nuts, portable fruits & veggies, raisins & other dried fruits, honey sticks, etc. for helping you keep on track during a busy week. Muffins are your best friend when going to parties or restaurants where everything else is off limits.
• Know your microwaveables and stock up. Unsalted canned veggies, old-fashioned oatmeal, unsalted grits, tea, instant coffee, homemade cocoa, corn, potatoes, sweet potatoes. These are the foods I am aware of that can be prepared solely via microwave, no precooking necessary. In this age of convenience, on a diet of inconvenience, cherish them.

More blogs on Low Iodine Cooking: LID Essentials, How to Make the Diet Bearable, and LID Peanut-Butter Chocolate Chip Cookies

Do not touch the Jalepenos. They bite.

But, like many young ignorant novice cooks, I assumed that foods you can pick up with your bare hands at a grocery store are safe to touch.

I WAS WRONG. There is this horrible debilitating infliction that no one talks about. It is called "Jalapeno Hands." I kid you not. This is a real affliction caused by touching the inside (seedy part) of a jalapeno.

It looks something like this: ____________[insert beloved family member here] is innocently chopping peppers for a delicious recipe she found in the THYCA cookbook. Lately she has been experimenting with spice, so she decides to add some zip with jalapenos. She takes a small bite of one to test their spiciness. Mmmm, not bad.

She begins slicing the peppers, but all those tiny seeds get in the way. It would be so much easier if she just rinsed the seeds out of the pepper with her hands, so she does. She goes about sautéing the peppers and onions, etc., but the stove must be on too high. It feels like she is burning herself, but she isn't touching the pan.

Pretty soon her hands are on FIRE. They look normal, but she is in terrible terrible pain. Something is WRONG. Web MD to the rescue. Turns out, she isn't alone. She comes across a website where dozens of people are talking about "jalapeno hands" and the remedies that do and do not work.

So she soaks her hands in vegetable oil. Nothing. Milk. Vinegar (gag). Baking soda. Aloe. NOTHING WORKS. The only thing she can do is sit with her hands in a bowl of ice water until 5 am when the pain finally subsides enough for her to fall asleep with her hands wrapped in cool washcloths.

Don't let this happen to your loved ones. I know you are skeptical (my husband still is). I know it sounds hilarious. But at the time I was pretty damn miserable. And it could have been prevented by a simple warning. I am now an advocate of putting such a warning on all recipes including jalepenos**. In all caps. And red lettering. And maybe some skulls and crossbones. If I were to go into the business of warning label making, mine would look like this:

At least my stuffed peppers came out. This is my spicier version of the thyca recipe. Enjoy cautiously.

Low-Iodine Stuffed Peppers:

-8 bell peppers
-1 medium onion
-2 jalapeno peppers (optional) ** WEAR GLOVES OR YOU WILL REGRET IT
-1 pound of ground turkey
-2 cups of cooked rice
-2 chopped tomatoes
- pinch of parsley
- pinch of garlic salt
- kosher salt and pepper to taste
- a pinch of cayenne (optional)

(SIDE NOTE: If you are not on the low-iodine diet, you should add Tony Chachere's Creole Seasoning to this recipe and just about everything else you cook. That s*** really is great on everything.)


Preheat the oven to 350 degrees. Chop the tops off the bell peppers. The main bell of the pepper is to be stuffed. The tops can be chopped and added to the filling. Chop onion, garlic, and tomatoes. Chop jalapenos ONLY IF WEARING GLOVES.

In a large pot of boiling water, boil the peppers until just tender, 2 to 3 minutes. Remove and dry on paper towels.

In a large sauté pan or skillet, heat the oil over medium-high heat. Add the onions and chopped bell peppers and cook, stirring, until soft, about 3 minutes. Add the turkey, garlic, parsley, salt, black pepper, and pepper flakes. Cook until the meat is browned, stirring with a wooden spoon to break up the lumps, about 6 minutes. Add the rice and tomatoes and stir well. Remove from the heat and adjust the seasoning, to taste.

Pour enough water into a baking dish to just cover the bottom, about 1/8-inch deep. Stuff the bell peppers with the rice mixture and place in the baking dish. Bake until the peppers are very tender and the filling is heated through, 25 to 30 minutes.

Remove from the oven and let rest for 10 minutes before serving.
Per Serving: Calories: 330; Fat: 17g (Saturated Fat: 5g); Protein: 17g; Carbohydrates: 26g; Sugar: 6g; Fiber 0g; Cholesterol: 52mg; Sodium: 542mg

I'm Not Dead Yet: Living with Thyroid Cancer (Papillary Carcinoma)

Thy CA Cycle r Front thycacyclerback

Well, I didn't start the year off on a terribly cheerful note. In fact, my last blog appears to have only succeeded in worrying others unnecessarily. My mother-in-law checked my neck (it is surprisingly hard to do on your own) and didn't feel anything to cause alarm. So I'll start again, this time with levity. Who doesn't love levity? Especially British levity? After all, I'm not dead yet, and I might very well be getting better. If you haven't yet seen the hilarious Monty Python clip I'm referencing (welcome to Earth) or just want to enjoy two minutes of silliness, watch this video:

My New Year's Resolution: Live with cancer like you don't have cancer.

Being not dead, I, like every other fool in this country, have made several new year resolutions and even started working towards some of them. In fact, my very first act of the new year was to sign up for the 62 mile ride for the 2012 Tour de Cure. Participating in this ride last year exponentialy increased my interest in bicycling and gave me a tremendous sense of accomplishment. I did feel like I was dying the last two miles of the 32 mile ride, so signing up for the 62 mile is a bit ambitious for me. However, I have five months and change to get into shape for it, combining two goals into one. If you too have made some sort of physcial reassessment goal (and I know you're out there) and want/need a challenging event to push you in that direction, you can sign up as an individual for only $25. Oh, and it's also a great way to raise money for Diabetes research.

I rode twenty miles last Saturday, now the mileage to beat. I also signed up for a boot camp starting in February, so I'll let you know if I recommend it. Or make it out unscathed. And I have my awesome THYCA Cycling jersey, gifted to me by my grandfather-in-law, so hopefully this will be my "before" photo, with an awesome "after" photo to follow (I will most definitely look like that in 6 months):

BEFORE:

AFTER:

I have written and submitted two books to publishing houses, received three rejections (and one conditional acceptance), so I feel more officially like a writer. I have written twenty pages into my latest novel and five new poems for the poetry manuscript my grandmother and I are trying to get published. I am determined to be the published author of all three (my children's manuscript, poetry manuscript, and novel) before the end of the year. Yay blind ambition.

I am still in the process of launching my online business, but I feel sure to finish the website in the next few months. In the meantime I am learning an entirely new language made up of mostly acronyms. For instance, today I learned how to transfer the A records of my external DNS to my FTP web host via an IP number. This morning I wouldn't have known what that sentence meant.

I have also taken up cooking and am not terrible at it. I am determined to come up with some delicious iodine-free recipes of my own, which I will of course share with you. My first is a variation on the THYCA cookbook greek chicken and orange chicken, which I will call "Nothing Rhymes with Chicken a l'orange," because I can. You can leave it topped with onions and garlic (as pictured), but if you like sweet, topping this with a bit of marmalade or honey is even better. Also, I like the citrus combo of lemon and orange together, but you can go with one or the other if you prefer; just double the orange/lemon juice and fruit quantities. **Recipe below.

These are just a few of the things on my 2012 Checklist. Checklist with a capital "C" because I am a big believer in them. My daily checklist usually takes me about a week to get through, but if I didn't make them tons of small undone tasks would accumulate into a giant mess. Also, there is something truly therapeutic about crossing something off a list.

The best cure for worrying is staying busy. So make a check list. At the top write "read awesome blog." Now cross it off. You're welcome.

**Nothing Rhymes with Chicken a l'Orange Recipe:

* 6 chicken breasts (can be done with other chicken parts)
* 1 cup orange juice
* 1 cup lemon juice
* 1 chopped onion
* 1 lemon
* 1 orange
* 2 chopped cloves of garlic
* 1 tsp oregano (honestly I usually guesstimate with the spices, sprinkling until it looks good)
* 1 tsp thyme
* 1/2 tsp orange extract (if you have it and like a strong orange flavor)
* 1/4 cup white whine (optional but adds flavor)
* 1 tbsp cornstarch
* kosher salt and pepper to taste
* orange marmalade/honey (also optional)

Make sure chicken is defrosted. Place the breasts in a pan. Preheat oven to 375. Chop the onion and garlic and top the chicken with it. Mix the lemon juice, orange juice and cornstarch. Add spices and extract. If you have time, cover and let marinade in fridge for 4 hours to overnight.

Pour all contents into a baking pan, separating chicken pieces. Cut slices in the sides of each breast so the marinade can get in while cooking (this also makes it easier to check whether they are fully cooked. Slice the orange and lemon thinly and place the slices on top of each breast (I try to fit at least one lemon and one orange slice on each breast).

Bake for 40-50 minutes. The meat will be really tender and delicious. Top with marmalade or honey or be creative. Serve with Basmati rice.