Life from a bottle: Post-thryroid reflections

I’m at that point in my post-thyroid cancer bout when the cancer itself is no longer a threat. I was a high-probability success story from the start, with a well-contained tumor and no sign of cancer in my lymph nodes (knock on wood.) This summer I was so busy moving that I forgot to celebrate two years since my surgery, and just last week would have been two years since my quarantine for radioactive iodine treatment. I can say with confidence I’m cancer free.

What I’m learning now is how to live without a thyroid. I’m grateful for the people who can relate and post to the Facebook group Dear thyroid lovehateyou, and other cancer survivors who bitch with such relish about their missing body parts. Some days I’m so down on how I don’t have a thyroid anymore. I wish I had known more about what my thyroid was doing for me before the diagnosis, instead of learning all about it once it was on its way out. “But Maria, whatever do you mean? It was such a small, meaningless set of hormones whose function can be replaced by a pill.” Yeah, right.

This is the deal – the invisibility of your thyroid when it is functioning well is a beautiful thing – you run around with some sort of regular energy level, your body can amp up or ramp down your metabolism, you skip along like you are in a tampon commercial and constantly feeling awesome. Yes, I’m painting a rosier picture than it really is, but twenty-twenty hind site is very important here, in this post-thyroid land where my dose has reached a new plateau for a couple years (212.5 mcg per day) and where I have to be careful about having too much calcium too close to when I take my pill, where I can’t tell if my weight gain is from lack of exercise or wrong dose, where my body doesn’t adjust like it used to (and I’m older now, yeah, yeah). I am in a better position than most people, perhaps, because I have a job that comes with health insurance and so by virtue of having this very precious status I should be able to live my life with very little impact on it given that I don’t have a thyroid.

Wrong. Simply the having of insurance does not make life without my thyroid easier. During this transition from graduate student in Seattle to faculty member in San Francisco (yay! I have a degree and a job!) I’ve been struggling with how to re-start medical care in a new place. I know I have hundreds of dollars a year in prescription drugs and the need to access a qualified endocrinologist, and these factors weighed into my selection of medical insurance through my new job that requires me to pay on top of my employer’s contribution. That hard decision behind me, I sat down to count the number of days I had left before I needed to somehow get a new prescription of levothyroxine, and confront a new person who doesn’t know me nor know that all they have to do is write a prescription for a small pink pill I’m already taking everyday. This is how my brain put it together – a mixture of an identity crisis, the burden of building a new relationship with a doctor who wasn’t there through my cancer treatment, and some emotional insecurity linked to how I would be judged by my new doctor, as if they could take one look at me and decide I wasn’t handling my forced hypothyroidism correctly. For me, there is real anxiety that comes with trying to work with a new doctor, I think because I know I will be seeing this person more than once a year for the next few years, and that’s more than I ever needed a doctor before cancer. I have a new provider in mind, but I’m still nervous about meeting her.

But even before I go too far down the line of new face to face doctor interactions, there’s still the issue of the dwindling supply of pink pills. That is a strong cause of fear in my life. I’ve woken up on more than a couple of occasions wondering how many pills I have left before I need to get a new prescription. For those of us for whom the memory of being hypothyroidic during radioactive iodine treatment or other causes is still fresh, the idea of going low again is not at all appealing. I wrote a song for guitar about how badly I just wanted to be able to take levothyroxine to feel normal during my iodine treatment. I think I called it “Days until myself again” and I will probably never play it live for anyone (I was seriously down and had no sense of judgment, so I just played it to myself sitting along at home all radioactive.)

Most recently, counting the pills the other week, I figured I had enough to last two more weeks, which was plenty of time to call the pharmacy that had my prescription, find out if they could still fill my prescription and have it mailed two states over to my new home, and keep up my schedule. Alas, though I see myself as partially identified as this person who take that particular pill every day, those who control the pharmacy have a different view of me as a number. After calling the pharmacy, I was informed that though there were still two refills left on my prescription it could not be refilled since it was over a year old. I asked the pharmacist in Washington to explain to me in California what that meant, and all she could say was that they can’t fill a prescription more than a year old. I froze. In my mind I thought, “well yeah maybe for those other people, but you don’t know me and you don’t know that I take this every day, have for two years, so clearly this rule doesn’t apply to me.” Instead I asked her to explain how I could have two refills left and still not be able to get the prescription filled, and she explained again, that even though I have two refills left the prescription on file was over a year old and so she couldn’t fill it.

I don’t every really have a nice metaphor for the feeling that followed, but it was that feeling of being completely unknown, of total strangerhood when all I needed was to be rehumanized, reanimated by my history, remembered as a whole person who was coming to be partially defined by this small pink pill. Instead I was helpless. If only the pharmacist knew that this piece of paper she needed updated was just going to be a very similar piece of paper, that this was normal for me, and that stopping me from getting my pills was abnormal – then maybe she would just say she could pop it in the mail. But no, we were in this legal land where suddenly her hands were tied. I looked again at my small supply of little pink pills, and even though I knew I wouldn’t die without them, I thanked the pharmacist for her time, hung up the phone and started to cry. I cried because she wouldn’t just send the damn pills. I cried because I had papers to grade and instead I was stressing out about medicine. I cried because although I have new medical insurance I don’t have a doctor yet and so I don’t have a new piece of paper from a new doctor yet. I cried because the last time I called the office of my primary care provider I had been told a new patient appointment was about a month away. I cried because I felt so powerless to help myself.

Then I called my husband and cried some more in frustration. We were mutually frustrated over the phone, but couldn’t really do anything. My brain kept insisting, don’t these people know I just need more of the same damn little pill I take every day? I don’t need rules, I just need that little bottle. Finally I calmed down, I got off the phone with my husband, I called my old clinic in Seattle, who paged my old doctor, who called me back in ten minutes. I finally talked to someone who knew me and who had the power to call in a new prescription. Everything was going to be fine, for now.

This is what the medical industry is like for me, a person who is coming to be partially defined by her reliance on it, who is learning how to navigate it, and who doesn’t have the time to figure out all the ins and outs when she’s trying to do her new fantastic job.

As a well-insured person in the medical-industrial complex, I should be able to access adequate and timely health care that is appropriate for my needs and I should not have to sift through hours of webpages, manuals, or phone calls to do it. Shit, even uninsured people should have those same rights. In my world vision, as one of millions of people who take a prescription drug every day I should be able to carry on with my life with some kind of special status associated with me and my prescription that at the very least does not require a new one every year. I feel like I’m in this special group of people who have a reliance on medicine that is still regulated like it’s our first time using it. I don’t feel like I am in a relationship with the medical world that acknowledges my experience with it. Instead, I feel powerless. So much of my energy these past two months have gone in to figuring out how to re-start health care in a new place, and that’s time I don’t have.

So thyroid, I miss you. And I look forward to the next chapter in becoming a post-thyroid cancer person, where I care less about my pink pills, and maybe even stop taking them all together as I explore alternatives to medicine, and know and trust and new doctor.

Word Art: What does it mean to have “Place value understanding”?

Here is a word cloud I made from text from the responses my class wrote on a bonus question on their final about math knowledge for teaching. Click on the picture below to go to the link.

I was interested in finding a way to see what ideas popped up the most in their writing, and so made a quick text document in which I typed up chunks of their responses, making sure to use essential phrasings from their one page hand written responses, then wordle did the rest (such a cool website!)

I-131 Treatment (with Photos!)

“Swallow this radioactive pill,” sounds like a tall order.  The day I went in for my treatment dose, I was feeling as good as someone who’s hypothyroidic can feel.  I wasn’t nervous, because this was the second radioactive pill I’d taken.  I took a small imaging dose the previous Friday, then was scanned on Monday, and now Wednesday, Adam and I were in the waiting room at our scheduled time.  Okay, I was a little nervous because I wasn’t sure what was in store for the next five days – what would isolation bring?  How was I supposed to sleep alone in a strange room, with strange noises?  would I puke?  I had read awful things about stomach linings and radioactivity, so I just didn’t know.

We were called to the lead-lined walls area shortly after arriving.  We waited for the nuclear safety officer.

Waiting for the radioactivity safety officer

and waited….

waiting for the nuclear safety officer

We didn’t wait that long.  In the pictures, you can see that the area we were in was a nice, comfortable space off of a hallway, with mirrors to reduce claustrophobia (I think.)  So we took pictures while we waited.

The nuclear safety officer came, and had me sign some papers.  We talked about questions I had and what to expect.  Because my cancer was caught so early, but I had a big tumor, the doctors had decided my treatment does was around 100 micrograms.  This was good, because it meant I should experience less side effects.  Nonetheless, I had a million questions, mostly related to contact with people, laptop usage, walls in my house picking up radiation.  So we chatted for a few minutes.  It was good to ask these questions even though I had researched them beforehand, because the internet is full of conflicting information, so I wanted to know the UW way to simplify my choices.

After that, the doctors arrived to chat, and we talked about what was going to happen.  I would swallow the pill, and go home immediately. They don’t want you to linger around the hospital if you are doing out patient, because you start emitting gamma rays. They explained again what my doctor at the Seattle Cancer Care Alliance had already said: the uptake would be only in my remaining thyroid cells, should kill most of them, and be expelled by my body where it is not taken up mostly in the first 36 hours.  Thus, I would need to drink a lot of water, take a laxative, and suck on lemon candies so that I could help all my body’s systems expel the radioactivity and reduce my risks of colon cancer.

Next, they went over the procedure. At UW, they hand you a glass of water, and the pill in a little plastic tube.  You are to tilt the tube back and swallow the pill.  I know in some cases they have put the pill in people’s mouths for them, to reduce the risk that it ends up on the floor.  Frankly, if this pill had fallen on the floor I would have scooped it up and swallowed anyway.

When all my questions were answered and the procedure was clear, the radioactive saxophone case holding the pill was wheeled in…

saxophone case full of gamma rays, my nuclear officer Jen in the background with me.

Tell me that doesn’t look like a saxophone case, people.

The doctor handles the pill in the plastic tube, note how he has gloves and I don't (hahaha, probably don't do anything around radioactive substances)

And then it was down the hatch,

mmm...radioactive iodine

Start the clock! I'm radioactive!

Just before they hustled us out, they measured how much I was emitting.

I'm emitting gamma rays through my tummy!

Placing a yardstick directly on my belly button, and placing her instrument at the other end, the reading that came out is that I was emitting the number 11.4, compared to a range of 3-4 which is normal radioactivity in the atmosphere.

At twice the distance, the levels drop to acceptable

Measuring at twice the distance (around 6 feet), the level drops to around 3.3, which is approximately the square root of 11.4 (well, numbers are close enough).  Turns out, it is a quadratic relationship.  In plain English, as long as I stayed 6 feet away from people, they were getting exposed to acceptable levels of radiation. So that was our fun with numbers.

Then, we hustled to the car, drove the 20 minutes home, and watched a movie, sitting at opposite ends of the living room.  I wasn’t allowed to eat for 2 hours after taking the pill, and wasn’t supposed to eat for 2 hours before my appointment, so I was pretty hungry later that day.

On the first day, I didn’t feel very different.  But the following couple of days, you put together the hypothyroidism, the still on the low-iodine diet, and the new found slight nausea from the pill, and I was a little bit of a mess.  However, I had a great group of friends checking on me, and a wonderful partner to make sure I was taken care of.  So no big whoop.

And now, months later, with relatively normal thyroid levels, I’m doing okay.  Waiting on that six month check up…

“My Radioactive Sister”

Tomorrow I go in for the treatment dose of radioactive iodine.  I’m doing this as outpatient, and will then be in a type of quarantine for the next five days.  To prepare for the iodine uptake, I have been off of my thyroid hormone replacement pills for three weeks, and have been on a low iodine diet (including no dairy, among other restrictions) which will continue until three days after treatment.  I’m nervous.  But in the midst of my anxiety, this cartoon with original music from my brother Luis Zavala is giving me a great laugh.  I just have to share it with you all.

click picture below to open the video in a new window/tab, and turn your volume up!:

My Experience with a Low Iodine Diet

As I prepared for the radioactive iodine treatment that follows surgery and is the next step in my papillary thyroid cancer diagnosis treatment, I was placed on the not-so-dreaded low iodine diet.  If like me you find the information in the thyca.org cookbook useful but overwhelming, here is a little sample of my experience with the low iodine cookbook and low iodine diet in general.  I hope you find it helpful.

What and why the low iodine diet?  A much better resource to answer this question is available at http://www.thyca.org/rai.htm#diet

Low iodine diet as a home-made foods diet

When I was a week into my low iodine eating, I realized that my interpretation of the diet has been to eat entirely foods I make from scratch, short of pressing my own olive oil or caning my own sugar.  It’s like a real food diet, without dairy, soy, or sea salt.  On this diet, you are welcome and invited to eat many natural healthy foods, like veggies, fruits, and nuts.  You are asked to limit your meat intake to 6 oz a day, and your bread intakes to four servings per day – excellent to make sure you are filling up on non bread items like a big healthy salad.  Now that I am in the swing of things and have some staples pre-prepared, I am seeing the positive side of this diet in that I am entirely off of processed foods and paying attention to exactly what goes into my body. I will try to continue to make my own foods from scratch even after the low-iodine restriction is lifted because I am just feeling better eating what I am making with my own two little hands.

A Breakfast: Potato, onion, yellow pepper, and egg-white scramble, with avocado and a lil' ketchup.

Why pre-prepare?

For those of you who are doing the low-iodine diet as part of preparation for RAI, you have probably also been taken off of your thyroid hormone replacement, and you will get tired, tired, tired over the weeks that follow.  So make meals that you can heat up easily, make the little things that you will reach for (in my case, ketchup for my egg whites) and won’t have to worry about.  All these things will keep for at least the two weeks you are on the diet.  And since you will not immediately regain your energy by the time you are back on hormones, you can make extra entrees and re-introduce iodine into the foods through using sea salt instead of table salt, adding yogurt as a dessert or side, adding milk back into your coffee, etc.   I am also the primary cook in my personal relationship, and so I just cooked the same stuff for my man, but he added other items to make sure he was getting more iodine, like a dollop of sour cream to a potato, or extra meat, or wrapping his lentils with rice in a tortilla and eating it like a burrito.

Step 1: I flew my mom in

Well, she wanted to come and help out.  That was fine with me! To prepare for cooking, this is how I recommend approaching the low-iodine cookbook:

1. Sit down with a copy of the low iodine cookbook, a pad of post-its, and a pen or pencil. I printed a two-sided copy from my home printer, but ask your doctor’s office to help print it if that is a hardship.
2. Read through the basic guidelines of the diet before you look at the recipes. Be familiar, so you have a sense of how to balance the food you accumulate in your freezer or fridge.  For example, there are many bread recipes, but you are limited to four servings a day.  There are many meat recipes, but you must keep you intake down to no more than 6 oz a day.  And so on.  Don’t take my word for it – read the guidelines.
3. Take a moment to both think about the kinds of food you are really going to want to eat when you are not feeling at your best, and kinds of foods you always like to eat before you read the recipes. In my case, minestrone soup, lentils, and chili are good comfort food for me.  I am not much of a meat eater but I decided a couple of meatloafy or hamburger patty type items might be good to have on hand, and maybe reheat well.  I also figured a loaf of bread is a good thing to have around.  Aside from plenty of fresh fruits and vegetables, these are the kinds of items I thought I would eat the most on the diet.
4. Skim through the table of contents of the low-iodine cookbook and get familiar with the sections of the book. Since this is a free book lovingly compiled by the people at thyca, there are many, many recipes representing a variety of palates.  You may not need to look at all sections.  For example, I knew to skip anything that was pork based because I really don’t like pork.  I skipped the entire section of dessert, but that’ because I had a good recipe for peanut butter cookies and figured that would do me for a couple of weeks.
5. Flip to the sections of the cookbook that are most compelling to you. Your goal is to tag a few entrees, a few sides, and a couple of other items.  Maybe 10 items that catch you eye all together.  As you come across a recipe that looks good to you, tag it only if you are sure you want to cook it.  Remember, it’s a big book.  You might just start with recipes you want to cook that look like they will freeze well, so you can cook entrees for your most low energy times (so skip the salads).  You can always look through the book again.
6. Tag recipes you want to cook by sticking the post it on the page so that it sticks out over the edge. On the edge of the post it that you can see when you close the book, write the name of the item (this is because every page has a few recipes, and you are making a quick tab to find it by sticking the post it there.)
7. Finally, go through the recipes you tagged and see if they require any item that you need to make in advance. For example, anywhere you see tomato sauce, you need to make your own tomato sauce in advance if you don’t have access to very carefully made de-iodized tomato sauce.  Find the pages with recipes of these from scratch items, and tag them.
8. Have a cooking extravaganza and freeze/refrigerate/store the food in individual containers. My mom and I packaged the food up and stored it away for easy reheat down the road.

The FOOD: What I actually ate and had on hand

I got into a habit of having egg whites, potato, and fresh fruit for breakfast, some kind of large saladish thing for lunch, and then an entrée with a side of veggies for dinner.  If I felt like it, I had a bready snack or side with dinner.  Sometimes the dinner entree was pasta.  So those were my habits in general with some other variations.

Lunch: spinach apple chicken salad, with dried blueberries, sunflower seeds, and tomatos. Drizzle of balsamic vinegar and olive oil.

Many of the recipes that I wanted to make, such as minestrone soup and chili, called for tomato sauce.  Not one to take chances, I decided to make my own tomato sauce.  In addition, just as thyca.org recommends, I wanted to make and store the basics before I got too hypothyroid or irradiated to take proper care.  Here are the things we made and stored in advance for cooking later on:

• · Tomato sauce
• · Tomato ketchup (some guidelines say that the ketchup in the bottle is okay, but I wasn’t taking chances)
• · Pesto (frozen in an ice cube tray, then popped into a plastic bag, frozen)
• · Olive oil infused with garlic and parsley

I tend to use lemon, balsamic vinegar, and olive oil as a salad dressing, so I didn’t make any dressing in advance.

Here are the items we made that froze very well.  Many are directly from the book, with our own variations such as lots of cumin (which I love), and some are just my mom’s staples:

• · Beer bread (wrap in plastic, then stick in a freezer bag)
• · Blueberry muffins (individually wrapped in plastic, then stuck in a large freezer bag)
• · Minestrone soup
• · Chilly con corny
• · Lentils with some pork and carrots
• · Chicken fajitas without the fajitas (froze better than I thought they would, in individually portioned plastic freezer bags)
• · Mini meat loaves (love this recipe! I want to make them all the time!)
• peanut butter cookies (based on recipe in the book, plus apple sauce, so I stored these in the fridge)

And finally, I always kept boiled potatoes in the fridge (easy side dish), fresh spinach, carrots, yellow pepper, avocado, and onions.  With all this, I could make many satisfying meals by re-heating and barely chopping.

In my pantry, dried blueberries and cranberries, roasted unsalted almonds, and raw sunflower seeds were a good thing on hand to enhance any salad for lunch, or mix all together for a quick snack.

A note about meat: I found it easier to tell myself only one meal that contained meat a day, and that helped me to stay well in the 6 oz per day range, since 6 oz of meat is a lot.  I tended to eat more like 4 oz in a meal once a day, and that was just fine.

A dinner: shell pasta with brussel sprouts, garlic, and red onion, side of tomato and cucumber salad.

Final words

I have actually really enjoyed being on the low-iodine diet since I have been encouraged to make things from scratch that taste better than what I buy in the bottle.  I know time is always an issue, but more than time for some of us is prioritizing our health.  I hope the low-iodine diet is seen by some of you out there as a chance to re-connect with homemade foods and discover your strengths in the kitchen.

Hope this has been helpful!  I sit here irradiated sucking on my sour candy and wishing you the best of health

Mz

Mortality panics that go bump in the night

I had an unsettling dream, that even in the brightness of day makes me tear up a little if I try to recount it.  In the dream it was dark.  I was sitting at table in the kitchen in a place that looked very much like our old apartment in Sunnyvale – you cross through the living room, climb the stairs and two bedrooms and a bathroom were at the top of the stairs.  In the dream, this place I was in was under some construction.  Plastic sheets covered the sparse furniture.  It was night time.  I was checking my phone, but put it down to walk upstairs.  The lights were off.  In the dream, the room at the top of the stairs was being converted into a large bathroom with a big tub.  I walked towards this room because I could hear water running.  This room was under the most construction, covered in the most plastic.  I thought perhaps there was a broken pipe and walked in to check.  Turning the lights on, I noticed a figure floating in the large tub, only a face at the surface among sheets of plastic. I ran to the tub, my heart pounding in the dream, because I was sure I was coming across a dead body.  It was my youngest brother, his eyes closed, his face still.  I started chanting “no, no, no” under my breath, and grabbed him, sat him upright, feeling the stiffness of his body.  I momentarily got angry that I left my phone downstairs and couldn’t immediately call 911.  Had he drowned? Had he slit his wrists? The water was luke warm, but clear.  What had happened?

I woke up.  I didn’t jolt awake, but rather my consciousness woke up and tried to start changing the dream, change what was really going on, suggesting that maybe foul play was afoot, as if murder was some consolation from suicide, as though it’s far better to remember your loved one as taken from life, not taking their own life.

Reality edged in as my internal monologue raced through my head, reminding me my brother was fine and just laid out with a broken foot home in California.  Was this the source of the dream?  Did my mind meld the brief worry over his foot into a what-if-he-died, then-how-would-you-feel scenario?  I don’t know.  It’s more possible to me that his recent trip to the emergency room piled on a lot of new worry to an already worrisome situation – a lack of steady employment, a lack of medical insurance, it all plants the seeds of what would happen if he didn’t get the care he needs.  What would happen if he was allowed to expire? And would I be responsible, as an older sister, even though we’re all adults?

I also think that my own cancer diagnosis has me homing in on the mortality of those I love, especially my family who is a little far away.  I was told point blank by my radiologist that I’m not going to die from my cancer.  Try telling that to my mother.  But while she worries over me, I worry more about her!  (So if you’re reading this mom, take care of yourself so that I don’t have to worry about both of us while I’m radioactive.) Perhaps I’m subconciously converting worries about my own death to worries about having to keep living without people I love.  This is far more depressing than thinking about my own mortality, so my command to my brain is to stop it.  I’m seeing my family this weekend and I’m going to see that they’re all just fine, including me.

Surgery number 2

Let’s not get into the long boring details, but my tumor turned out to be thyroid cancer. Now I’m going in tomorrow at 6 am to have the rest of it removed. wish me luck! If you are awake and think of it, sing me a little song or dance in my direction – send light.