More on the Good and Bad of Treatments for Thyroid Cancer

 The First Two Days After Receiving Radioactive Iodine Treatment.

Are kind of a blur. The only real distinction between them was that each day brought a new privilege. On day 1, I was allowed to begin my Synthroid dose. Nothing happens right away of course, but after such a lengthy anticipation, simply taking the pill was a kind of communion. I wouldn’t have been surprised if moonbeams had shot out of my fingers and toes. (They didn't.)

Mostly I spent these days sleeping or trying to sleep. I was in quite a bit of pain, but I think it was related more to a stomach virus than the RAI. The list of side effects for radiation suggested mild stomach issues and rarely nausea. My stomach churned, my intestines did the mambo, I vomited twice, and my urine (in the interest of total disclosure) "burned" in the sense that it gave off a lot of heat (it did not hurt, but made me feel even more like an alien). So if you are thinking a few days of isolation are going to be like a mini-vacation or will be a fantastic opportunity to catch up on that ever-growing to-do list, think again. It is, however, a great chance to get in all those naps you’ll be missing when life returns to normal.

Losing Your Taste Buds After RAI. 

Day 1 is also lemon candy day*. Although the studies done on the effects of lemon candies seem inconclusive at best, many doctors (including mine) recommend you suck on lemon candies to save your salivary glands from excess radiation damage. I recommend them for another reason. Save yourself from your taste buds!

The worst side effect of by far is a horrible mutant after taste left by the RAI. I had read many personal testimonies regarding the side effects of RAI, several of which mentioned the loss of taste buds for 1-2 months. A loss of taste buds would have been a godsend. I hate to once again be the bearer of bad news, but radiation has a taste and it tastes like death. Neon green death. (I know the color of the taste because I was one of those “rare” people who puked.) More specifically, my mouth was suddenly and strongly filled with the metal-and-salt taste of blood. Hardly Hallmark movie material, but not exactly pleasant. And unless you are really into the whole vampire culture, not likely to make food or drink of any sort appetizing.

This also affects day 2 and its privilege: getting to the end of  the low-iodine diet. I have spent quite a few hours during that diet dreaming of the foods I was going to indulge in as soon as I could eat regularly. My first meal was going to be something low-calorie and nutritional, like fried chicken and ice cream. Unfortunately, after radiation, food of any kind seemed adversarial, and I subsisted mostly off of lemon candies and water.

*I started eating those little lemon candies as soon as I woke up on day 1 and ate hardly anything else the next two days. I recommend eating Lemonhead candies, because they are small and round and less harsh on gums than the Brach’s brand. Also, the outer coating of sweetness helps prep what buds are left for the bitter lemon taste. Between these two flavors (lemon and blood), I ended up experiencing a very strong aversion to anything salty during these first few days; I’m sure this has something to do with the iodine.

Resuming Human Contact, Post-RAI.

However, the night of day 2 also meant that I could finally be within 3 feet of another person. If you are not familiar with RAI contact restrictions, they are basically 2 days of complete isolation from humanity, 6 days of freaking out if anyone comes within your imaginary 3 foot personal bubble, 12 days of running away from children and pregnant women, and the vague promise that one day, with thyrogen, you will be allowed to rejoin humanity (but only until your next RAI scan).

If you are an RAI alien, you may be wondering:
• Who came up with these restrictions?
• How completely arbitrary are these restrictions?
• If the radiation is only secreted in bodily fluids, why is it dangerous to sit in cars with people or get closer than three feet to them?
• Is it safe to dance, oh is it safe to dance?

Let me know if you figure out the answer to any of these. Back to Day 2….

My husband agreed to meet me at the duck pond on the conditions that I shower and change clothes (he’s really quite a lovely person). I agreed to meet him on the condition that he bring me a loaf of warm French bread, the one food luxury I felt my stomach could stomach.

After two days of no human contact, I finally had a date, although it was truly the strangest date I have ever been on. I was as excited about seeing my husband as I had been on our wedding day. At the park, I found a bench away from most people and parked myself on the edge of it, trying not to touch it with my mutant skin.

As I waited I became rather conscious of how strange and awkward I must look: a woman alone at a duck park, not feeding or reading or drawing, but sitting perfectly upright, craning her neck around, and occasionally shooing the ducks away as if afraid of them. I was also becoming really anxious about the limited amount of time I would have to interact with my husband, given that it was getting dark and I was not allowed to use public facilities. When he finally arrived (an excruciating fifteen minutes later), I almost forgot the rules and ran into his arms. Instead, we had to wave hello and sit on opposite ends of the bench. He fed the ducks with some of the loaf from his end, while I snacked on some of it from my end.

I’m not sure what people might have thought in looking at us. Overly conspicuous spy meeting? Exchange of divorce papers? Most awkward first date ever? I am, however, pretty sure that we might have unwittingly scared the wits out of a young boy (maybe 9 or 10) who wandered a bit too close to our bench. He rather innocently planted himself on the shore directly in front of us to feed the ducks. Unfortunately, ducks are somewhat indiscriminate about which humans feed them and whether those humans are radioactive. A drove of them came too close to me, leading to the following very strange conversation, overhead by aforementioned little boy:

ME: Noah, the ducks are coming closer.
NOAH: Yeah, I see them.
ME: Noah, they are getting too close. Get them away from me!
NOAH: (Trying to lure the ducks by tossing bread near his side of the bench.) I’m trying.
ME: Noah, I might hurt them. Get them away before I hurt them!
NOAH: (Now shooing the confused ducks away.) I’m trying!
ME: (Screeching.) Oh no! Baby ducks! Save the baby ducks!! Get them away from me!!

Shortly after this, the little boy left. Now, maybe he was a very intelligent little boy who thought to himself, ah that lady is undergoing RAI therapy and has a 3 foot boundary to maintain when in contact with other creatures such as adorable baby ducks. Otherwise he may have left under the mistaken impression that I am some kind of psychotic who experiences uncontrollable homicidal urges when around ducks.

Your guess is as good as mine.

Radioactive Iodine Therapy: Day Zero

What it is like to undergo Radioactive Iodine Therapy.

RAI and the isolation period are difficult times, but to what extent probably depends on your home and family situation. I live with my husband and two cats in a small apartment with one bed. This meant that both my husband and my cats had to leave for 6 days (separate bed minimum regulation). Yes, technically, he could have slept on the couch. Yes, the doctors tried to convince me that having cats is not the same thing as having small children and that the risk to them was significantly less. But neither of these things would have been very good for my peace of mind or household. Our couch sags in all the most inconvenient places, making even naps a semi-hazardous ordeal. Also, I do not trust the perspective of doctors on pet health. I’m not going to carry my cats around in a handbag or push them through the park in a stroller or dress them in tiny outfits, but they are members of my family and I’m not going to risk their thyroid health on any statement containing the word “probably.”

So point fingers where you will, I was completely alone during my ablation. When I was reading about others’ experiences with isolation, I was tempted by the idea of staying in a motel for a couple of days. However, some very wise people pointed out that this could endanger the housekeepers, especially the pregnant ones. As careful as you want to be and promise to be, it is hard to be vigilant about everything you are touching and every body fluid you secrete. A sneeze becomes something to fear; getting on an elevator becomes an ethical decision. Have you ever tried wearing rubber gloves for 24 hours? They become uncomfortable and inconvenient after a few minutes. So it is best to accept that you are not going to be as pristine or vigilant as you could hope for even in perfect health, and to follow the regulations as closely as possible.

RAI Day 0*: Infection

Sound like the title of an apocalyptic film? While the overall experience was not quite as sci-fi as I anticipated (no hazmat suits), I think this is as close as I’ll ever get to understanding what it would be like to be an untouchable. My perspective on self changed radically, unwillingly, and in a matter of minutes. I could not help but see myself as toxic, infected, dangerous. I had to keep reminding myself that it was only temporary.

The morning of ablation (process of receiving RAI), I was nervous, but ready for the whole thing to be over with. In the extreme stages of hypothyroidism, devoid of energy and desire, my body started to feel like a prison. I was simply waiting for the next step and the promised miracle drugs that would follow. There was also some confusion with the hospital staff that made me a little more impatient during the last stretch of waiting (I was initially promised a treatment on a holiday when no one was working).

In my hurry, I dressed for the outside weather (100’s) and not hospital temp (about -20 in hypo degrees). Hospitals are not terribly speedy or efficient. Dress warmly! I wore shorts, a t-shirt, and sandals and was shaking so visibly that they offered me a blanket. I would recommend long pants and close-toed shoes as minimum precautions. Most of the appointment felt very usual. Like usual, I got lost. Like usual, I went through patient registration. Like usual, I got lost again. They really ought to consider some kind of hospital escort service. Like usual, some kind staff member eventually led me to the right place. Like usual, I sat in a waiting room, reading, for about an hour.

Then a nice, young, very nervous-seeming doctor led me to an area. The area consisted of a door, a chair and a table and became a kind of room when he pulled a screen like a half-moon around us. For the next half-an-hour I sat reading in my new “private” waiting room, while he occasionally popped in and out of the door to ask me questions or hand me paperwork. He was quite thoughtful, constantly asking if I needed anything (including, thankfully, the blanket), but everything he said sounded like an apology. His words tripped over each other and his eyes slipped from ceiling to floor and back again. I wondered if he was socially awkward or just felt really sorry for me.

Eventually another older, habituated doctor came along to tell me matter-of-factly everything I had already read online about RAI treatments and precautions. Once I signed my life away (again), the nervous doctor led me to a room with a large yellow and red caution, radiation sign on it. The room itself looked like a storage closet. It was long and narrow, with some tables and junk piled at the back. At the front of the room, near the door, was a table with two bottles of water, three Oprah magazines, a telephone and a television on it. The doctor invited me to sit at this table while he retrieved the pills.

I very much expected a HAZMAT suit, but the only noticeable difference in his appearance when he returned was a pair of large rubber gloves. He was also carrying a heavy lead box, gray in color, which he set on the table in front of me. He then explained that one of the seemingly discarded “tables” in the room was actually a radiation screen. At this point, there was a kind of stooge-like miscommunication about who was to stand behind the screen. I confused him right out of his ability to speak by getting up and standing where he pointed. He explained to me that I was in his spot. We switched places and I opened the box. Inside were two plastic tubes, and inside these were three clear capsules filled with gray powder. I took the three pills with the water, closed the box and was told to wait another half-hour so they could monitor my reactions. During this time, nothing more exciting happened than the phone ringing. It rang four separate times, one ring each time, and I’m still a bit confused as to whether I was supposed to answer it or not (they had not warned me to anticipate calls).

Then I was released. No fanfare. No troops. No persons in HAZMAT suits escorting me to my car. And honestly, I didn’t feel any different. Chilled to the bone, but not different. I could feel the ice water sloshing around inside of me and the goosebumps pricking my skin, but physically, I did not feel radioactive.

Psychologically, I felt like a freak. I guess the lack of precautions should have clued me in that I was safe, at least for the ride home. But they ask you to drive yourself so you don’t endanger anyone else. How could I be sure that bumping into a small child in the lobby might not damage it? That years down the road, that kid wouldn’t have thyroid cancer because of me? And so suddenly, they were everywhere. Moms with strollers, kids with extended fingers, to-be moms with extended bellies. All too close. All unaware that I was a ticking toxic time-bomb whose sweat and saliva were like so many guns pointed at their children.


I must have been quite a sight, dodging and weaving, trying to stay three feet from everyone I passed. I even refused to take the first two elevators that came, because there were kids on both of them. I felt like a murderess simply handing my parking ticket and money to the garage toll collector. My husband has since informed me that it is unlikely the radiation could have absorbed into my bloodstream yet. That it was unlikely I could have harmed anyone. But still. In my mind, I was infected.

Not a lot changed over the course of that first day. I was told not to eat until 5pm, and having not been allowed to eat the rest of the day, my stomach was my biggest concern for the first few hours at home. After eating I was in and out of sleep, like usual. At most I might be able to say there was some tingling sensation, like when a limb falls asleep. But that could be the calcium deficiency.

In reality, most of the drama of the day had occurred in my head. Not sure what to recommend for that....

*According to my husband, a math guy, starting at Day 0 makes sense. Somehow it makes counting easier. So on Day 3 patients can be in the same room as others and that is better than them assuming that their 3 day no-people rule ends on the third day. Idk. To me it feels more like one of those 3 Stooges scenes where they say they are going to do something on the count of three but can't get it right. "Wait, on three or after three?"

Light and Shadow: The Good and Bad of Cancer Treatments

7.17.11

I am beginning to resurface from hypothyroidism. 

Today I am in love with the world. I would like to say that this is for some lofty spiritual reason, but I have promised to be completely honest here. The real reason is rather material: I woke up PAIN FREE!

Oh, the glory of FEELING healthy! Even for a moment! I think I could tap dance down the street if someone asked it of me (and I haven’t taken lessons since I was five). This simple absence of pain is as dear and real to me as the ecstasy of falling in love. The chirping birds outside my window are no less sonorous than a choir of angels, the sunlight that I have blocked out so tightly is now the fountain of youth, and even this apartment fills my heart with champagne bubbles. I am alive. I am pain-free. I can do anything.

Let me explain. This is actually Day 4 of my confinement and the RAI treatment. It is the first day I have felt like doing anything more than curling into a ball and willing myself to sleep and/or expire. I pray that this is not the case for everyone who goes through this. The truth is hypothyroidism sucks. It turns you into a cranky vampire. Going without any thyroid for six weeks is horrible and painful and life-draining. But in the long run it is only six weeks. During the last few days of my ablation. I have  had the added misfortune of experiencing the negative side effects of radiation that doctors claim to be "rare." I really hate that word. I am always in that 1-10%. Blech.

Before I discuss the hardships of RAI (darkness), I would like to share some light. There is a reason these are the most basic and universal of symbols, at the heart of many religions and attempts at understanding human nature. Light and shadow cannot exist one without the other. But they are not as simplistic as good and evil. They are both indispensable. And while most of us prefer light and would rather never have to face the shadows, it is precisely those moments of darkness that make us truly appreciate and delight in the day. I would have no reason to find such joy in my current state, had I not been in pain for the past four days. The removal of pain is a far more beautiful and recognizable blessing than if it had never been there.

Have you ever noticed how a simple glass of ice water can be liquid ambrosia after a long hot day of exercise? Or how a warm bath can feel almost spiritual after a day in the snow? I am not arguing that one’s life will have more meaning and verve if one seeks pain and conflict. Just that when you inevitably find yourself in a seemingly unending tunnel, imagining how wonderful it will be to drink in the light can help you get to the end of it.

When you have Cancer, there is nothing so wonderful as support from loved ones.

On that note, I would like to share some of the beautiful gifts that others have shared with me.
Here is the sign my friend Meredith made for me, my initials spelled out in thyca ribbon:

The beautiful roses my husband brought home on our one-year anniversary (other people have sent me equally beautiful flowers, most of which are still alive, but a bit camera-shy):

Gifts from a friend and roommate I lost touch with five years ago:

A prayer shawl knitted for me and notes of love and cheer from my church:

The huge stack of books and movies my parents gave me to get through isolation:

My first bottle of Synthroid!!!!

My neck scar, healing nicely (about 5 wks post-op):

“There's no disaster that can't become a blessing, and no blessing that can't become a disaster.” –Richard Bach

But it’s best to focus on the blessings.

What It Means to Be HYPO: Signs and Symptoms of Hypothyroidism

What is hypothyroidism?

This was a question I had from day one of my diagnosis, when terms like hypo, hyper, TSH and RAI were introduced like catch phrases. When your entire physiology is about to change, a Wikipedia definition or list of symptoms proves deficient. Read too many forum fears and complaints and you might start to feel a bit like blind Gloucester.

I will try to describe, thoroughly, how I have experienced hypothyroidism. I was hypothyroidic for a long time before my cancer diagnosis and had no idea I had a thyroid problem. I had Hashimoto's Disease, the most common cause of hypothyroidism in the U.S. for so long that my thryoid had been ravaged by it prior to my thyroidectomy. I had years of fatigue, weight gain, mood swings, sensitivity to cold, muscle aches, depression, etc. I chalked it up to life for a long time. When I finally did seek help from a doctor, six months prior to my cancer diagnosis, I went because my mother begged me to. She said thyroid problems were common in our family and I should get tested. Well, I did, and my test was negative! Six months before they found a 3cm tumor in my neck. Even if your test comes back clean, you may STILL have a thyroid problem.

Remember the beloved Shel Silverstein poem “Sick”? I recited it in third grade. A gash, rash and purple bumps? All the basics of hypothyroidism. It’s like getting beat up by God. Okay, I might be exaggerating slightly, but I’m extremely hypo right now and feeling a tiny bit sorry for myself.

A freakish number of people do not even know what their thyroid is until they are diagnosed with a condition. I had heard about "thyroid problems" because they run in my family, but had no idea what a thyroid was, where it was located or what it did. To the right is a picture of the thyroid. It looks like a shiny pink butterfly wrapped around your trachea.

The thyroid is an endocrine gland (a gland that produces hormones and releases them in the bloodstream) that controls just about everything. It controls your body's ability to use energy, make proteins, and react with other hormones. When your thyroid is messed up, it is a big deal.

In simple terms, hypothyroidism is an extremely common thyroid condition in which your thyroid does not make enough thyroid hormone for your body to function normally. It affects 2-6% of women and .2-2.5% of men (the % increases with age). While the definition of hypothyroidism is simple, its symptoms are not. The reason I compare this illness with the "Sick" poem is because the list of symptoms is as unending as the little girl's attempt to get out of school. The symptoms of hypothyroidism are many, vague, and common. Because of this, it is often dismissed, by doctors and society.

Hypothyroidism is real. Recognize the symptoms.

One of the biggest problems with thyca awareness is the lack of drama surrounding it. We do not go bald or turn colors or forget who we are. And our society loves drama. Have you ever seen a movie or TV show in which a character had a thyroid problem or was diagnosed with thyroid cancer? Probably not. It just can't hold a candle to  breast cancer, lung cancer, heart attacks, Alzheimer's. Don't get me wrong. I am extremely grateful that I do not have these conditions and do not have to face the horrific treatments and symptoms they come with. But thyroid conditions are no less deserving of awareness and treatment.

The symptoms of hypothyroidism sound a lot like the symptoms of life. No one thinks to themselves, “I put on five pounds; I wonder if I have cancer,” or “Man I need a nap; must be my tumor coming back,” or “I probably shouldn’t have yelled at my husband like that; maybe I should get my thyroid checked.”So people ignore them. Doctors ignore them. Patients try new diets or longer nap times or anti-depression medications. And when they don't get better, we blame THEM.

America (or American meritocracy or U.S. patriarchs) decided long ago that everything good depends on PRODUCTIVITY and EFFICIENCY and everything bad stems from being FAT and LAZY. So while we all have a good laugh at Homer Simpson, we certainly don’t want to be him. Then we would be laughed at. So we ignore the extra pounds, the tiredness, the sore throats, the muscle aches, the mood swings and chalk it all up to not being all we could be. But at what point were we supposed to stop and say, “Wait, something is wrong here. It’s not just me, something is wrong with my health”?

I don't know. No one does. Which is part of the problem. Our best step towards diagnosis and treatment is patient awareness. If people know these problems exist, know their family history, and know when their body is acting strangely, they are more likely to seek help. 

Even on a lot of thyca support group sites, there seems to be a very fine line drawn between advising people on how to deal with the symptoms and warning them against “blaming it all” on the thyroid. While I do not think the disease or surgery should be a “Get Out of Judgment Free” card, these symptoms are very real, very hard to deal with, and definitely deserving of consideration.

So if you are popping out at parties or feeling unpoopular or know someone who is, this is for you...

The Symptoms of Hypothyroidism

(Please keep in mind I have no medical expertise. These are the symptoms as I understand and experience them.)

MIND LEAPING

On several websites this is described as “memory loss,” forgetfulness,” “depression,” “irritability,” “difficulty concentrating,” etc. I feel like my term, “mind leaping” encompasses all these things. It is not so much that you lose your capacity to think. Instead, it’s a sad trickle-down economizing of the brain. Things that were once easy are hard, things that were once hard, now seem impossible, so the brain disperses its wealth a bit less directly.

This is strongly tied to the complete lack of motivation symptom. Whereas before you might have taken the time to find the right word or look for those glasses or censor yourself before you speak, these filters and skills now seem a superfluous waste of brain energy. Your mind just leaps over them. So you make up words, buy another pair of glasses or walk around blind, and tell your boss, family and friends exactly what you are feeling in that moment. Not good.

This also makes daily tasks like driving not such a good idea. I’ve read a lot of debates on whether to drive or not while hypo. I really don’t believe it is comparable to drunk driving, unless your drive also coincides with naptime. When I had severe Hashimoto’s 3-5pm was “naptime,” which meant if I attempted to drive home between these hours I looked a lot like one of those bobbing, water-drinking, plastic birds. So I had to wait it out to be safe. My commute was about 1-1.5 hours long. As hypo as I am now, that would be extremely dangerous. However, short drives have not been dangerous, just confusing. For instance, I have been going to a friend’s house 7 minutes away for the last 17 years. The other day it took me about 20 minutes because I forgot where I was going, passed it, and couldn’t remember how to get back right away.


Other examples of mind leaping:
• Got lost going home while following another car.
• Experienced a surge of homicidal rage towards a stranger with a “No fat chicks” license plate.
• Wore a shirt inside-out.
• Have said “you know what I mean,” about 1000 times. They never do.
• Frequently find myself in rooms, wondering why I am there.
• Missing: one pair of eyeglasses, two pair of sunglasses, several outfits, multiple dishes, one toothbrush, shampoo and conditioner, a scrabble piece, a scarf, books, Tupperware, the remote, a TV for the remote, and (surprise) socks.

GARFIELD SYNDROME

Refers to the laughable and lovable cartoon cat, not the former Pres. Described as “weakness,” “fatigue,” “tiredness,” etc. In my opinion, also inextricably linked with a complete and utter lack of motivation. From a physical standpoint, a lot like having the flu. This is probably the worst and most debilitating part of it all, especially if you are used to being a productive member of society. We have all had those days where waking up is the hardest thing to do (holidays, weekends, illnesses, unwelcome tasks). You are lying there because some godforsaken creature (an alarm clock, a bird, a cat, your husband) has woken you, but you can’t think of a single thing that makes getting out of bed worthwhile. Even with a full bladder or rumbling stomach, you lay there, mentally tabulating the pros and cons of staying in bed forever. Now imagine that that is every day.

I am quite lucky in that I do not have a job to go to right now. If I did, I would most assuredly lose it. If there is not one already, someone should create a thyca website devoted to tips and tricks for getting through a normal workday. On the worst days I have barely managed to get myself to the kitchen (downstairs) for food and to the bathroom (3 feet away). My absolute favorite activities—painting, writing, reading, biking—have all lost their appeal. I have gone a week without checking email (Inbox: 124), a month without checking mail (bills!), and several days without stepping outside (blindness). It took me more than five days to complete this blog. I do not recommend this.

I have found that the best treatment for GS is outdoor exercise, preferably with a friend who is willing to kick you a couple times if you decide to nap in a stranger’s front yard. Actually getting out the door is the hardest part, but I found that once I was actually doing something, a fair amount of the usual desire to do it returned.

ACHY-BREAKY EVERYTHING

As with all other symptoms here, it is difficult to tell what to attribute to hypo and what was already a problem. For instance, I was in a car accident in June 2008 and have experienced neck pain and major knots in the neck and shoulder area ever since. I have had headaches my entire life, but they tend to get more frequent during specific times in my life (stress-related) and most recently are tied to my neck issues. This is why I was seeing a chiropractor and a neurophysiologist.

However, when I told my neurophysiologist about my thyca diagnosis, he told me he would hold off on recommending any further treatments until I’ve been on Synthroid for a while. Apparently this miracle drug might just help with my neck as well (yay!).

Being hypo definitely exacerbated the usual amount of pain I experience in these areas. It also caused a general but bearable soreness in my legs, arms, stomach area. I think if you were not previously experiencing any kind of injury, this will be an inconvenience akin to normative menstrual cramping: nothing to scoff at, but nothing debilitating. Again, the best medicine for me was outdoor exercise, but take it easy.

Weight Gain

Check. Uncheck. Check. During treatment I would not let this become a major concern. I am not above vanity, but when your body is dealing with so much confusion and your hormones and metabolism being dealt such rapid alteration, it is hardly worth stressing over. I have not really kept track of pounds over the course of this, but the fit of my clothes has altered both ways over the last month. I went from liquid only diet (loss) to a few days of gorging on soon-to-be taboo favorites (gain) to the low-iodine diet (both). My appetite has come and gone, but is generally smaller (likely due to food restrictions). The diet is great because I have had to give up processed, restaurant and fast foods, but the benefits here are probably outweighed by the increase in sloth. So rather than drive myself nuts with a balance sheet, I am trying to stick to the healthier recipes in the cookbook and force myself out of bed.

Sensitivity to Cold

Check. I was already a very cold-natured person. My mother and I are those strange people who carry sweaters around our waists in July (in TX) in case we have to go into a grocery store, movie theater, restaurant or other place that have no fear of A/C bills. Post-op, it was even worse, manifesting in A/C battles with my husband (I kept turning it off completely and he is very hot-natured), going around in the car with no A/C (if you are from TX, I just heard your gasp), and wrapping up in those sweaters (indoors and at night mostly). If you live in a colder climate or are experiencing this during the winter, I recommend migration or dressing like this guy>>>>>>

Slow heartbeat

Also called bradycardia This is a little scary. Most of the time I do not notice it, but when going to sleep, I no longer feel entirely comfortable sleeping on my back. Lying down still feels a bit like choking, my heartbeat sounding loudly in my throat and my breaths gaspy. So I lie on my side.

Dry Skin and Brittle Nails

Not a big deal. The most I noticed were little patches of dry skin around my fingers and toes. No peeling or irritation. A small bottle of lotion helps.

Constipation

I’m talking bowels, people. A TMI topic, so I will leave it at this: my mother-in-law warned that it would behoove me to stock up on things like Benefiber and things ending in “lax.” She was right. Use sparingly.

Heavy periods 

Did not notice a difference.

Hair Loss

Not yet. But I have plenty to spare.

Depression

Seriously? Mary frickin Poppins would be a little depressed in these circumstances. Just hide the knives and stay away from tall windows.

Tingling Hands and Feet

Also called paresthesia. Annoying but not painful. Take lots of calcium supplements, especially since you can’t consume any dairy. TUMS also help with stomach discomfort.

Slow Healing

I’ve noticed that I bruise more easily, that they last longer and that they are more painful than usual. For instance, I have never had a problem giving blood in the past. When you have cancer, doctors ask for blood like cops asking for a driver’s license. Normally I wouldn’t even remember which arm they took it from, but lately I am left with achy green and purple marks at the site, each lasting a little over a week. Also, I had my first stye and it lasted a month. Would not go away for all the wash cloths in the world.

Some Tips for Making Hypothyroidism Bearable:

• Heating pads and a tube of Icy Hot are indispensable for aches.

• Triple-check ovens and locks.

• Take off your valuables and put them in a safe place. Tell someone you trust where that place is. As someone who is forever losing things, I decided not to risk the additional memory loss. So my wedding ring and other jewelry are on vacation (helps with hand-swelling anyway).

• Put aside some good books and a stack of movies. Even if you are the most ambitious type-A personality in the world, you will be forced into downtime. Might as well make it enjoyable. I preferred to revisit favorites because I keep falling asleep in the middle of things.

• Carry water and energy snacks with you everywhere. My favorites are a baggie of unsalted peanuts and raisins, apples, bananas and clementines. Just don’t forget them in your purse for too long…

• Long hot baths are great. Just don’t fall asleep.

• Do fun, stress-free, non-food activities with the most forgiving of your friends and family. Try not to play games that are too competitive or high-risk. Make sure whomever you are spending time with is aware that you may not be feeling your best, may say offensive things, may get emotional and may need to leave. If these things do not deter them from wanting to spend time with you, count your blessings!

''Nobody can tell what I suffer! But it is always so. Those who do not complain are never pitied.'' –Mrs. Bennet, infamous hypochondriac of Austen’s Pride & Prejudice ☺

The Low Iodine or Iodine Free Diet

7.6.11

Be Prepared for the Low Iodine Diet

Hmm. Things have been a bit more confusing than usual lately. My mind is definitely fogging over at this point. I was hoping the brain-washing part of hypothyroidism was exaggerated. More on that later.

I did not officially start the low-iodine diet until this past Wednesday, because the Red Lobster leftovers in the fridge were far too tempting on Tuesday. I do recommend having one last big seafood/salt bash before the diet, because it makes it all feel a bit more celebratory, but it’s not such a good idea to bring anything home. Also, that meal will be thought of often and with great lust. You may even have strange dreams about shrimp and salmon.

My BIGGEST mistake by far was not preparing way in advance for this. Not that I wasn’t warned. All those handouts and cookbooks have it printed right on it: “Before you start becoming hypothyroid, prepare the basics and freeze.”

But it’s not in bold. Or 2000 point font. Like it should be. Consequently, I went from glorious seafood feast to nothing but raw fruits and veggies. Under normal circumstances, I like these foods. But a whole day of eating only blueberries, pears and carrots made me a bit cranky.

Worst crash diet ever. Not great on the digestive system either. But I had nothing else to eat. Most everything else is off limits unless you cook it yourself and I am not a cook. And depending on whether you are a heavily processed-food dependent, microwave-meal toting person (like me) or a super health nut (they do exist), this could be easy (the latter) or could cause you to shoot daggers of hate at your otherwise beloved husband as you munch on another damn carrot stick and he delves into the most coveted leftovers in the world (the former).

For the sake of my marriage and sanity, I had to learn to cook quickly. Fortunately, I have awesome friends, Lillian and Jenny, who actually like to cook. They definitely saved me from cheating by helping me prepare no-iodine foods other than raw fruits and veggies.

The THYCA Cookbook is Your New Best Friend

Initially I was quite suspect of the thyca cookbook. I figured that “low-iodine” was comparable to “gluten-free” or “vegan” or any of those other code words that I (ignorantly) assumed meant having no taste. But everything I have made from this cookbook has been amazing. Truly delicious. The oatmeal cookies (made for me by my mother-in-law) are the best I’ve ever had.

Again, I can’t totally or sometimes even partially take credit for these successes, because as a novice cook with a half-functioning brain, I am a bit helpless in the kitchen. With Lillian I made three delicious dishes:
Pasta salad (p.19)
Rachel’s Greek-style chicken (p. 44) and
Chocolate zucchini bread (p. 90)

In my fervor to make consumable food, I made almost three times as much pasta salad as the recipe calls for. While the first six bowls or so were delicious, I now cannot bring myself to even look at the leftover pasta salad in my fridge. I certainly cannot bring myself to eat it. Moderation and variety are definitely key to this diet.

However, I will say that I replaced the peas and corn it called for with sweet peppers and avocado and it was, initially, a very tasty dish. We also improvised with the chicken a bit. Being short on lemons, we added one orange and some orange juice to the dish (yum).

The zucchini bread is a definite hit. I have had 3 requests for the recipe from people not on the diet. And, if you are a chocoholic like me, a treat like this is almost a necessity. I recommend sharing the desserts in this book as much as possible. It helps you gain back some of the normalcy and popularity you lose in not being able to share in normal meal practices.

With Jennifer, I made the Spanish potato salad (p.20) and orange and apple muffins (p. 99). Again, we varied the recipes a bit, out of necessity. For instance, the potato salad recipe is far too similar to the pasta salad recipe to make its consumption desirable. So we replaced the oil-and-vinegar dressing with the homemade mayo (p. 23).

Warning: prior to refrigeration, the look and smell of the blender mayo is almost unbearable, especially if you have an aversion to vinegar. It is a horrible puke-orange due to the paprika and not even close to the fluffy consistency you would hope for in a condiment. DO NOT SMELL IT. Just trust me. Despite this, when chilled and mixed with the potatoes it is actually a quite pleasant and mild tasting addition to the diet.

I never quite realized how much of my social life revolves around food until this diet. Eating out at a restaurant is no longer an option. After a fun day at the zoo with my friend Brooke and her daughter Kynlee, we went to Chili's. I considered ordering the one allowed restaurant food, a baked potato no skin, but on a 100 degree day and without access to non-iodized salt, the appeal was not great. So I munched on the snacks I had hidden in my purse (carrots, apple, zucchini bread) and sipped on a Sprite. I felt like a criminal. The waitress never said a word and, perhaps if I had gone through a lengthy “this is my cancer diet” speech, any complaints would have been nullified, but still. Criminal. A sneaky food trafficker.

I also had to miss out on a birthday dinner at P.F. Chang’s. My one year wedding anniversary is around the corner and I will not be going out to eat. I will not be able to eat the piece of wedding cake that stares me in the face every time I open the freezer. Not that I’m terribly superstitious or anything, but it would have been kind of cute to participate in a nonsensical good luck tradition with my husband. We don’t do nearly enough nonsensical things.

Fortunately, I have this beautiful loving family. Have I mentioned this before? One group of my in-laws (paternal) found ways to include me in their cookout, and I got to enjoy a pre-4th of July no-iodine burger. The best treat of all was having an entire no-iodine feast prepared for me by my maternal (?) in-laws. No-iodine pork chops, corn, bread, salad and those cookies I mentioned before, the ones that taste like angels made them. Angels who have the sole task of making cookies for god. I’m not joking.

As of now, I am scheduled to go in for RAI treatment on the 13th. I have, at different points been scheduled for July 4th, 5th, 27th, and the 1st of August. This doesn’t make for a great story, but it’s part of my experience. The sources of this scheduling confusion appear to be two-fold: 1) my TSH levels skyrocketed beyond what was expected; after only 2 weeks post-surgery they were well above 50 (they only need to be above 40 for RAI). 2) my doctors keep disappearing; I suspect they are all on vacation. In fact, I have to wait for one to return from vacation in order to get my latest appointment officialized. I am making up that last word because I can’t think of a real one.

Time for another nap. But before I go....

Some tips on how to make the low-iodine diet bearable:

• Cook and freeze weeks in advance, before the surgery if possible
• Celebrate with your favorite meal before you start the diet
• Purchase non-iodized kosher salt
• Aim for variety, not quantity. The diet is usually for two weeks, but even after a
week on 5 different dishes (not including fruits and veggies) food feels repetitive.
• Sweet was once my favorite flavor, but it is almost the exclusive flavor of this diet. Make as many unsweet things as possible. This means if you are preparing meat, don’t make the fruity meats. Make a plain bread in addition to the dessert ones.
• Carry snack bags of food everywhere you go. Energy is a constant problem.
• Since you have to cook, cook for others beside yourself. Bring low-iodine dishes to parties. You might hook some low-iodine bandwagoners.
• Try not to spend too much time around restaurants or people eating foods not on the diet. You might resent them in spite of yourself. Try not to resent the non-dieters. It’s not their fault.

A Bit of Advice Regarding Cancer

For those with cancer: As easy as it is for this disease to make a me-driven life even more me-centered, do your best to focus on others. It helps. A lot.

For everyone else: Please be patient with the me-focused cancer people. And please continue to share all aspects of your lives with us. Even the bad ones. It helps our world feel a little less cancer-centered.

The Confusion: How to Interpret Doctor Speech

7.1.11

Doctors Are Confusing.

The bad news I received on Monday does not feel as end-of-the-world today. I went to my new endocrinologist on Tuesday and my husband and I spent a cautious hour and a half asking questions so that there will be no more future confusion.

If you read my “Bad Day” post, you may have picked up on the fact that, up until Monday, I was under the mistaken impression that, not only had my surgery been a success in the sense that I survived, but an awesome success in the sense that they removed all the cancerous tissues and that these were strictly limited to the tumors on my thyroid. This is not the case. The reality is:

• Instead of two smaller tumors/nodules on my thyroid, I had one large tumor, approximately 3 cm in size. How I managed to miss this is beyond me. How my PCP managed to miss this when we were specifically checking for thyroid problems 6 months prior to my diagnosis makes me think I need a new PCP. According to doctors throughout this process, it is better to have multiple nodules than a single nodule, because this likely means a larger nodule is dominant rather than cancerous. This was, of course, told to me as a piece of hope during a time when I was supposed to have multiple nodules. More than 10 medical professionals had examined me before it was determined that I had a single tumor. I guess the lesson here is to not take your doctor's word for it, but double and triple check their assertions.

• Instead of having the cancer limited to my thyroid, the cancer metastasized to nine surrounding lymph nodes. Nine out of nine (apparently everyone has a different number of lymph nodes). Not a good one in the bunch. However, this does not, ostensibly, mean I am more likely to die. I have the same prognosis as before. What it does mean is that I have a higher chance of recurrence (scary) and have to take small radiation doses for yearly scans (scarier) and be on this stupid low-iodine diet for at least two weeks of every year (ugh). I’m rapidly coming to the conclusion that the worst thing about thyroid cancer is that you can never truly be cancer-free. Even if all thyroid tissues are successfully eliminated, even if I never actually have a recurrence, the scans, blood tests, diet, synthroid dependence, scar, are all for the rest of my life. There is a decided loss of freedom in that.

Like me, you may be wondering how the heck I ended up so confused about my diagnosis. How did it get to the point where not a single member of my family understood my status or prognosis, except my mother-in-law, the doctor?

I have a theory. Remember how I found out about my cancer at work? Because the phone message I had received from Dr. K was so darn chipper sounding? Same principle at work here. I am dubbing this the Medical Professional Tonal and Terminological Irony Theory©.

Medical professionals must and will give bad news. They will potentially do so multiple times a day, every day, for the rest of their professional careers. Nobody likes giving bad news. Once upon a time, bad-news messengers actually got killed for delivering their bad news. That’s how the phrase came about.

So doctors, being as smart as they are, have come up with a fool-proof system for delivering bad news: do so in the most positive tone of voice possible, using the cheeriest terms you can think of. Perhaps you have already considered the medical “positive v. negative” conundrum. How in any other situation, they have a single, given denotation, as elucidated in dictionaries and first-grade classrooms everywhere. But in medical situations, presto! The meanings switch! Positive now means you have contracted some horrible, possibly fatal illness and negative means you are going to be just fine.

Add to that a giant smile, a delivery of large vocabulary statedinanextremelyfastsideeffectsanddisclaimersmanner and a honey-molasses tone and the patients are instantly fooled. Not a clue as to what is really going on. The end result looks something like this:




So while I was in my post-op, drug-hazed, state of mind listening to my peppy surgeon talk about how positive everything was, I managed to misinterpret my state of health as being hunky-dory.

If  You Have Questions About Your Diagnosis, Ask Them!

Lessons learned:
• Be wary of smiling, cheerful-sounding doctors
• Always anticipate bad news (can’t be disappointed)
• If you don’t understand something, ask. Then ask three more times and get a printed copy.
• Don’t be afraid to ask doctors to slow down when speaking.
• Don’t try to understand things when on heavy pain meds. Have someone else with you to do the understanding (preferably a sober adult).
• When it comes to your health, positive is not.
• Do not get distracted by singing and dancing barbershop quartets.