Failing the Thyroid Function Tests

In the year since I started cancer treatments I've had a lot of time to think about all the events leading up to my cancer diagnosis.  I felt completely dejected about having to leave the diagnostic ultrasound program without completing my degree.  Instead of a job skill I got cancer and thousands of dollars in student loan debt.

The more I dig into what is going on with me, the more grateful I am for those nine months of my life. Most especially I am thankful for my time spent with Dr. Peck, my pathology professor.  From the very first lecture, I knew she would be one of my favorite instructors.  Though she is a tiny woman, she is tough as nails with a larger than life personality and a heavy Russian accent.  The first thing she said to us after introducing herself was: "You may have noticed I have an accent. You will get used to this."

In her class I learned so many important things about the diagnosis of disease.  She taught me that hardly any patient ever has the "classical" presentation (signs/symptoms) of a disease, that "what's most common is most common", and most importantly that "tissue is the issue."  Except in a rare few cases, neither blood tests nor medical imaging are considered definitive for a diagnosis.  You must look at the tissue itself to know if the disease really exists.

For the last year, every six weeks I have been going to have my blood drawn for thyroid functions tests. The tests are intended to test thyroid function, but I don't have a thyroid anymore. As I have continued to feel unwell I started to question what these tests were really testing.

Thyroid function tests don't directly test the function of the thyroid.  What the test are a few hormones which might indirectly indicate whether there is a problem if their levels are abnormal.  An important thing to note, is that all of theses are serum tests, meaning they are testing what is in the blood and not what is in the tissue.  It's not possible to test at the tissue level without doing a biopsy. This fact will becoming important shortly.

Thyroid Stimulating Hormone (TSH) Testing

Let's start with TSH testing.  TSH is a hormone produced by the pituitary gland, sometimes called the "master gland", in response to low thyroid hormone in the circulatory system. .  It is the only gland in the body that has a direct connection to the brain.  Hormones released by the pituitary gland tell other glands to release their own hormones.  With respect to the thyroid, as TSH increases, it tells the thyroid to produce its hormones.  As those hormones rise, it tells the pituitary gland to stop producing TSH. This method of regulating hormones is called a "feedback loop" and it's how most hormones are regulated in the body.

That's how it works in a normal thyroid.  Without a thyroid, there is no feedback loop. My body doesn't make its own thyroid hormone so the TSH doesn't affect how much thyroid hormone is in my system.  TSH is produced in response to the amount of serum thyroid hormones.  

In other words, measuring TSH measures whether my brain thinks there's enough synthetic hormone in the system.  In terms of telling whether I feel well, it's a completely meaningless measurement.  The reason they measure TSH in patients with no thyroid who have had cancer is because TSH can also stimulate thyroid cancer cell growth so the theory is that if the TSH is low enough, cancer growth will be suppressed, and the cancer will be less likely to recur.  Unfortunately, studies have shown this might not be the case.

Thyroxine (T4) Testing

T4 is one of the hormones produced by the thyroid and is the "transport" form of the thyroid hormone.  Free indicates that it's only what is in the blood, not in any tissues or bound to any proteins. In patients with a thyroid, testing T4 can tell whether the patient is producing too little (hypothyroid) or too much (hyperthyroid) thyroxine hormone.  Comparing TSH and T4 levels is an established way of determining both whether there is a problem related to thyroid hormones and whether the problem is in the thyroid itself (primary) or caused by a dysfunction of the pituitary gland (secondary).

When you don't have a thyroid, you don't make T4.  This means that what T4 testing says is that I'm taking my pill every day.  I could tell you that without a blood test.  To some degree, it's important to measure because it keeps the doctor from making gross errors in medication amounts which can be damaging, but because this is just measuring the transport form of the hormone and only the levels in the blood, it doesn't say whether the tissue is responding well to the synthetic hormone treatment.

Triiodothyronine (T3) Testing

T3 is the working form of T4.  The thyroid produces a small amount of T3, but for the most part T3 is made at the cellular level in each organ by converting T4 to T3.  This allows each organ to convert the amount of T3 they need, independently of other organs.  "Free" indicates that it is what is free floating in the blood.  Only a very small amount of T3 is "free".  Most of it is bound to proteins, essentially disabling it from use.  Total T3 is a test of both the "free" and "bound" T3 together.  

T3 testing isn't regularly done because the test is considered unreliable.  While T4 can be in the system for a week, T3 will dissipate in about a day, making the levels of T3 highly variable even in a 24-hour period.  On top of that, most of the T3 that can be found in the blood is bound up to proteins so only a very small fraction of the already small fraction is available to cells anyway.  Most T3 is made at the cellular level so what is in the blood doesn't really say anything about what's in the tissue.

It's possible to get some useful data about T3 serum levels but only if the test is very controlled and performed days apart instead of weeks apart as is done for TSH and T4 testing.  In other words, for the practical purpose of balancing patients without a thyroid, there isn't a way to use this test reliably.

What's "Normal" Anyway?

If you've ever had any blood tests done you might have noticed on your results something called a reference range.  This is a range of samplings from people thought to be "normal" and in most cases the reference ranges are huge.  This means that the average range across many people is very large, but it doesn't mean that the average range of normal for an individual is the same size as the reference range.

In fact, it's usually the opposite.  Your personal reference range will be a small portion of the lab's reference range.  The range at which you will feel "normal" will be much smaller, but doctor's tend to disregard this and tell you that your labs are normal even when you could have subclinical hyper- or hypothyroidism.

A 2012 study published in the European Journal of Endocrinology discusses the difficulty of balancing thyroid hormones based on reference ranges:

Some studies showed that hypothyroid patients treated with L-T4 had impaired well-being despite their normal TSH levels. Meanwhile, patients with moderately suppressed TSH levels postoperatively had higher serum FT4 levels and unchanged serum FT3 levels compared with their native levels...

In other words, these patients had to be given more than normal amounts of synthetic T4 to achieve normal levels of TSH and even though there was more T4, the amount of T3 didn't go up along with it, and on top of all that they still had not managed to make the patient feel normal.

Many doctor's exclusively look at TSH to determine whether the patient's dosage of T4 is correct, but the study goes on to question whether we really understand what should be normal for patients without a thyroid.  With T4 alone it is seemingly impossible to balance thyroid hormone values in the blood serum.

Tissue is the Issue

As I mentioned before, all the above tests look at the hormones in my blood and none of them measure whether the thyroid replacement therapy is working, where "working" means adequately replacing the function of my missing thyroid.  Testing at the tissue level on a live human subject is not a great idea because you're talking about taking out pieces of brain, bone, or muscle.  Remember, T3 is largely created at the cellular level and each organ needs a different amount of T3 for proper functioning.  This fact alone means that no blood test will properly reflect what is going on on an individual organ level.

In 1995, a group of researchers set out to find what was really going on by doing research on the scientists' mascot: the lab rat. Their research studied the effects of varying doses of T4 on the brain, heart, lungs, kidney, liver, spleen, and muscle.  What the study found was that the effects on T4 on tissue T3 levels varied and there wasn't one dose that would make every tissue operate normally.  Replacing T4 doesn't replace the normal function of the thyroid.

A Big Fat Fail

In the end, what thyroid function tests can tell about a patient with no thyroid is very limited.  They do not directly test the effects of hormone replacement at the tissue level.  The range of normal values isn't useful under normal circumstances unless something is seriously wrong and may not even be correct for patients without a thyroid.

For the past 6 months I've suffered from debilitating muscle fatigue and pain even though all my lab values have been "normal".  I wake up every day tired and I go to sleep exhausted.  I can't remember what being rested feels like and yet my doctor insists that I'm "normal".  It almost feels as though she's saying "If you just believed what the test says you would feel perfectly fine."

Thyroid function tests are not definitive and should not be treated as such.  Looking at TSH and adjusting medication based off of the one number that means absolutely nothing in terms of the effectiveness of the treatment is so blatantly wrong that it surprises me that this is the measure most doctors use.  Most importantly, reading these research papers I have discovered the biggest flaw with these tests: None of them consider quality of life for the patient.  It doesn't matter if the lab values are spot on if the patient feels like crap every day.  

Putting the Pieces Together: A Tale of Autoimmunity

The horrible thing about shows like House and ER is that they give the impression that doctors care about "solving" your case and will put in the effort to diagnose and treat the underlying problem.  My experience is that doctors treat patients based on symptoms, medical history,and lab results. That sounds reasonable at first but often those things are a snapshot of the problem.  They don't dig deeper because if they treat the symptoms and the patient stops complaining, job done right?

Currently my doctors think I don't feel well because I don't sleep well enough and I'm depressed, despite the fact that I've assured them I sleep as well as I ever have and I don't feel depressed, just annoyed at them.  I've cried 3 times in the year since my diagnosis.  Every one of those times was in frustration over not being physically capable of living a normal life.  I refuse to be emotionally castrated by anti-depressants because some doctors think I shouldn't have any negative emotions about my chronic illness.  Besides that, depression is a symptom of hypothyroidism so even if I felt depressed I wouldn't be convinced that it's the cause and not another symptom.

When I was diagnosed with Papillary Carcinoma of the Thyroid (PCT), I had virtually none of the "established" risk factors for having it.  No one in my family had a history of thyroid cancer or thyroid disorders, and I'd never had any significant exposure to radiation.  Aside from being female and roughly in the right age range, the doctors didn't know why I would have it.

After my surgery they did a full biopsy and one of the things they found was that I was in the early stages of chronic thyroiditis.  In poor countries, chronic thyroiditis is usually caused by a lack of iodine, but because of iodized table salt, most people in affluent countries have thyroiditis due to autoimmune disorders.  My doctor never mentioned this during my post-op appointment, though I had read it in the pathology report.

It wasn't until I asked to be referred to another endocrinologist that I was told there was indeed thyroid autoimmune anti-bodies in my blood, so much so that they couldn't tell if I still had cancer.  When I tried to ask her more questions about it, she refused to answer, telling me that she didn't feel it was relevant. My experience is that the first step toward getting the worst care possible is letting doctors decide for you what is relevant.  I started doing my own research.

Hashimoto's and Papillary Carcinoma of the Thyroid 

It literally took me less than 30 seconds to find a 2012 study that showed that patients with Hashimoto's Thyroiditis (HT) are 16% more likely to have PCT, and 53.6% more likely to have Stage 4 disease (distant metastases).  Finally, there was at least the beginnings of an explanation of how I ended up with cancer and suddenly I feel so much more lucky to have had my cancer caught so early, a stage 1 tumor with minimal lymphatic invasion.

According to the study, the link between the two was first theorized in 1955, so even though this is a recent study, the link has been recognized for decades.  This was one of a number of studies I printed out for my doctor for our follow up appointment.  When I started talking to her about Hashimoto's she brought up it up to me as though it would surprise me at how much better informed she is than I am, and maybe I'd realize I was a dumb patient that should just go away and do as I'm told.  I handed her my printed copy of the study.  She looked crestfallen.

In this very limited respect, she is correct that the fact that I had Hashimoto's and then got PTC is not relevant because it already happened.  If I had been diagnosed with Hashimoto's at a younger age, a lot of problems, possibly even the cancer itself, could have been prevented, but hindsight doesn't cure cancer.

That doesn't make the disease irrelevant, though, for two very big reasons.  First, I still have Hashimoto's Thyroiditis even though I don't have a thyroid. My blood stream is still teaming with auto-immune antibodies and will be for years.  This means that the consequences of having treated a person with Hashimoto's with a thyroidectomy are still relevant.  Secondly, the Hashimoto's Thyroiditis is just another stepping stone. It explains the cancer.  What explains the Hashimoto's?

Hashimoto's Thyroiditis After a Thyroidectomy

It was not surprising to me in the least to know that very little (published) research has been done about the effects of thyroid autoimmune antibodies after a thyroidectomy.  Eventually as the cause for concern (thyroglobulin protein produced by thyroid cells) is no longer present, the antibodies will decrease in numbers, though as I understand it they'll never fully disappear.  I'm sure from the doctor's perspective, it's "job done" once the thyroid is gone.

Antibodies are what your immune system makes in response to perceived microbial invader.  Anytime your body gets sick, it tries to manufacture as many of the antibodies as it can.  The antibodies are specially designed to attack and destroy a particular invader.  In autoimmune disorders, the body thinks that normal, healthy tissue is an infection and tries to attack it.  This means that my body has been pumping out large doses of thyroid antibodies for years, perhaps my whole life.  Imagine your body thinking you were sick for 33 years.

What I did find was an interesting study that showed that patients with high levels of certain thyroid autoimmune antibodies (anti-TPO) had much worse symptoms even when their thyroid hormones tested as normal (euthyroid).  The link above is just to the abstract but I was able to read the whole study using my local libary's health database. This excerpt from the study essentially describes my symptoms:

In our female study collective, we could demonstrate that the following general symptoms were associated with higher anti-TPO levels: chronic fatigue, dry hair, whether patients became easily fatigued, dysphagia, chronic irritability, and chronic nervousness.

It goes on to conclude that the symptoms could be related to high levels of anti-TPO antibodies, not just hypothyroidism, and that patients with Hashimoto's Thyroiditis have worse symptoms.  I also found a paper that concluded that patients with HT have more complications after a thyroidectomy.

I tried to discuss with my doctor whether the symptoms I'm having now might be caused by the antibodies and whether that meant they would resolve themselves as the level of antibodies decreased. Rather than having what I hoped would be a productive dialog about thyroid autoimmune disorders, she shrugged, said "Maybe," and decline to look at the study I'd printed out.

I still feel that Hashimoto's may be relevant to the question of why I still feel unwell a year after I started treatment.  Unfortunately, my doctor didn't want to talk about it at all.  I don't get the antibody levels in my lab reports but I do know they are dropping so there's a chance that in a year or two they may dip low enough and these symptoms might "magically" resolve themselves.  If that is the case, the good news is that I need to do nothing but wait.  The bad news is that I might have another year or two of feeling unwell with no symptom relief.

It's ALL Related

Even if the thyroid antibodies aren't the cause of my current misery, it's important for another reason.  In 2005, after battling with doctors for several months, I was diagnosed with endometriosis after having symptoms for 9 years.  Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus, causing blood filled cysts that burst and cause massive scarring, pain, and infertility.

Although endometriosis is not considered an autoimmune disorder, it is strongly associated with several other autoimmune disorders, including autoimmune thyroiditis.  In an article published in May 2013, the authors wrote that the underlying causes for both diseases might be the same. This means that the endometriosis, thyroiditis, and cancer could all be the result of a single, underlying autoimmune disorder.  When I mentioned this to my doctor her response was, "So what?"

"So what", indeed.  I'd really hoped, again, that I'd be able to talk to her about autoimmunity and what research there was about treating the root cause of both diseases, as the authors of the 2013 article suggest.  In addition to being related to each other, both endometriosis and autoimmune thyroiditis are strongly correlated to a host of other autoimmune diseases which means that I am at greater risk for many other autoimmune disorders.  If they could treat the underlying cause it might reduce or eliminate the risk of my developing other disorders like Type 1 diabetes, rheumatoid arthritis, or fibromyalgia.

The authors of both the 2002 survey and the 2013 article suggest that autoimmune disorder screening should be performed for all women with endometriosis.  If my doctors had screened me in 2005, could they have found the thyroiditis and prevented the cancer?

What Does it Mean?

To be honest, I'm not entirely sure what all of this means.  I'm incredibly disappointed by my doctor's refusal to discuss the topic of thyroid autoimmune disease.  I'm worried that without treating the underlying disease, I'll continue to have problems for the rest of my life with these various, related diseases cropping up.  I'm hoping talking to my primary doctor and perhaps getting referred to an immunologist might provide more information and testing that might ease my mind.

What I do understand, and have read in other articles, is that if you have Hashimoto's Thyroiditis and pelvic pain, you should get screened for endometriosis.  If you have Hashimoto's, regardless you should get checked regularly for Papillary Thyroid Carcinoma.  If you have endometriosis, you should get checked for both.  Hindsight won't cure me, but maybe having written this it will save someone else the same trouble.

Recovery: 8 Months in 2 Words

It's been a little more than 8 months since I lasted wrote here. The one year anniversary of my surgery came and went and I am still sick, still not "cured". With the surgery and radiation behind me it seemed that all that was left was the work of getting well again. I can sum up the last 8 months of recovery in two words: It's hard. Though I was terrified of spending the night in a hospital and prepping for radiation was exhausting, I never expected these parts of my treatment to be the hard parts about having cancer.

Procedures are scary, but they happen to you, sometimes while you're not even conscious. Recovery is scary, too, but in a soul-grinding way where you have to experience every excruciating moment of your inability to function like a normal person: Cleaning the drain every time I shower because so much hair falls out, days where I can't keep food down, days where I can't stand up or walk so I crawl on the floor instead, taking pills that make me feel weak and ill because without them I'd die, going to sleep exhausted and waking up tired.

When I started this blog, shortly after my diagnosis, there were several reasons for writing. First, for myself to have a place to put down and process everything that was happening to me. When I can write it out as story, I can see it more objectively and less painfully. Second, was to have a way to keep those who cared but were too far away informed about my treatment. The last reason is that I wanted a record of my experience for anyone else who might be about to start the same journey. This last reason is the reason that I've decided to start writing again.

After my last blog post, my recovery seemed to be going well aside from repeated infections of my salivary glands which were damaged during the radiation treatment. In February, after having spent nine months doing treatments and trying to recover from them, I finally returned to work. Every day since then has been a struggle. I feel like I do nothing but work and sleep. The weekends are spent recovering from the weekdays. I no longer go grocery shopping with any regularity. My apartment is constantly dirty. If it weren't for my boyfriend I think things would be completely unmanageable. He gives me the motivation to do as much as I can and picks up the slack when I cannot do any more.

It scares me to say, but I'm running out of energy to do the work of getting well. Spurred by that fear, I've decided to step up my involvement in my recovery. I've started putting all those anatomy and pathology college courses to work, doing my own research into my condition and the treatments. I've begun the long and difficult task of fighting with my doctors to get the individualized care I need to complete my recovery.

I learned from the period of my life where I struggled with endometriosis that doctors don't want complex patients. They want easy solutions that they can cure with lifestyle changes or pills that will just make you go away. Most doctors only see the symptoms and therefore only want to treat the symptoms. They don't want to try another surgery, an experimental treatment plan, or anything that requires them to stretch themselves. In my experience, they will treat you as poorly as you let them.

I am exhausted now and I'm scared I've put this off too long, but I am also angry at the way my life is and the attitudes of my doctors so I'm hoping that will give me the energy to complete this fight. Upcoming posts will be about my research, the treatments I'm trying, and the struggles with my doctors to get the care I need to get well. I'm hoping by sharing this here, it will benefit others who are now on the recovery side of thyroid cancer treatment. Maybe it will also help those close to me to understand. Chronic illness is hard for everyone and I often feel like they think I should be better by now. They deserve an explanation of why I am not cured, and to see how I am trying to be. The road to recovery is not a six lane, smoothly paved highway. It's a dirt track through the wilderness with few signposts. This is the hard work of recovery, and this is how I will get well again.

The T4 Roller Coaster

I haven't posted much here or on Facebook basically because I've felt too awful.  Around the time I had my radiation treatment I contacted my endocrinoligist to let him know I was having severe symptoms of fatigue and hair loss.  He ordered some blood tests but because it hadn't been long enough since the surgery and they were giving me shots in preparation for the radiation the results weren't very useful.

I waited a few weeks after the radiation treatment and then decided I needed to go back to the doctor.  By that point I had lost about half of my hair and I was also having tremors, heart palpiations, and extreme insomnia to the point that I was only sleeping a few hours a night but the worst was the exhaustion. I was only functional for about 4 hours out of any day and other than that I was either asleep or resting.  I used to walk for an hour or more most days but even a 15 minute walk could completely wipe me out for the day.

The experience of visiting the doctor again was frustrating.  He seemed put out that I would just make an appointment and show up.  I told him all of my symptoms and he indicated he thought I could be hypothyroid (not enough medication) and ordered blood tests for me.  The next day the results came in with my TSH being about .34 when it had been 1.43 prior to the surgery (meaning my body though there was more than enough T4).  Still the doctor recommended increasing my dosage of T4 to solve my "complaint" of fatigue.

After reading that, I didn't know what to do. I didn't think he was listening to me, I didn't think I was hypothyroid, and I didn't think increasing my dosage when my TSH was already so low and my T4 so high was going to fix how I was feeling.  I started doing some research and that's when I discovered that extreme fatigue, while usually associated with hypothyroidism, is also a symptom of hyperthyroidism.

I've said before that the thyroid hormones (T4 & T3) control metabolism but what is "metabolism?"  I think most people have some vague notions of what it is based on dieting and exercising fads, but really metabolism is the rate at which all of your cells do work.  The more T4 there is, the faster and harder your cells work.  This is really not good because you're wearing out your body, and can be especially hard on the heart which is really sensitive to T3.  This is why hyperthyroidism is bad for you.

The reason I'm losing my hair is because thyroid hormones also control growth.  Most people know that dogs shed their coat, well its the thyroid hormone that triggers that in them and if it's excessive enough it'll trigger it in humans as well, so basically I'm shedding.  How long the process will go on, I don't know, but just like a dog doesn't go all bald and mangy when they shed their winter coat, I also won't lose all of my hair (in theory).  When the doctor examined my scalp he saw a bunch of 1-3 cm hairs which means it's trying to grow back but it'll be about a year before I have a full head of hair again.

In the end, after doing my own research, I told the doctor that I thought his diagnosis and suggested treatment were wrong, that I was probably hyperthyroid and needed to reduce my medication.  He said he completely agreed and so about a month ago I started skipping one dose of my T4 each week.  Skipping that first pill felt like a miracle cure, I immediately felt better.  As the week wore on I started feeling worse again and then the next time I skipped a dose I felt even better so I knew I was on the right track.

It's taken awhile for the change in dosage to settle itself out.  I'm still losing hair and am down to about a third of the hair I started with before surgery.  Most of my severe symptoms have receded (the heart palpiptations, extreme fatigue, and insomnia) but I still feel tired and groggy all the time.  I did another blood test about two weeks ago that showed my TSH was up and my T4 was down, but I'll have to wait another month to be sure how the changes in my medication are going. I might need to slightly increase the dosage or maybe things will work themselves out.

I'm tired of not feeling normal and I'm worried that I'll never feel normal again.  It's been over five
months since my surgery and I haven't felt right since then.  I expected there to be some problems with getting the hormones sorted out but it is still frustrating. From doing a bit of online reading, most people said it took them about a year to start feeling normal, with lots of messing around with medications to get them right.

I'm also having to get used to a new way of eating.  Because of the hyperthyroidism I've been craving protein like crazy even though I've never been much of a meat eater.  I woke up one day and had leftover meatloaf for breakfast because I was craving meat so badly.   Eating now has a noticeable effect on how I'm feeling.  If I'm feeling tired and I eat I feel more energetic.  I've also started eating more sugary stuff which I avoided for years.  I have to be really careful to eat often and I find I have to avoid low calorie food because it doesn't give me enough energy to get through the day.

This is all counter to what I've been doing as far as eating for the last couple of years and it feels horrible to be putting so much high calorie food in my body but on the other hand my body seems to be loving it.  I can only hope that at the end of this ride I've settled out to a diet and a body I can live with.

Think With Your Hearts

The events of the past few days have left me sad and hurt, not because of what some politician is trying to do to me in the name of greed and power, but because of what people who have told me they love and care about me have said how they really feel through their words and actions.

In my last post, I mentioned that I was cleared of metastatic cancer, but I am still not cured of cancer.  I won't be considered cured by my doctors until it has been a year without evidence of recurrence.  Further more, in order to save me from cancer, they had to give me a life-long incredibly serious condition that requires constant medication, testing, and maintenance by doctors.

I have been so unbelievably lucky thus far in that I was given charity insurance to cover my expenses, but that charity insurance was only for the first six months.  I have been in tears several times this past week wondering how I'm going to be able to pay for monthly blood tests and all the other tests and doctor's visits I'll need for the next six months, plus a life time of testing and medication.

When the surgeon took out my thyroid he took away my ability to regulate my metabolism.  Without medication, I will die.  With improper medication I will have a drastically shortened life expectancy.  With even slightly off medication, which is what I have been suffering through with the last month, I will be disabled.

When I was first diagnosed, people told me how afraid they were for me, not just that I would die but that as a full-time college student with no health insurance that I wouldn't be able to afford to get treated.  Until the charity offered to cover my initial expenses, I even considered foregoing the surgery for a year or two until I could get health insurance, even though it would have increased the risk of the cancer going metastatic or simply cutting off the blood to my brain.

I was incredibly blessed, but I want you to consider another scenario.  If my cancer had not been so easily treated, if my situation was more severe right now, if I weren't already dead I would be praying to die as quickly as possible so as to cost my loved ones the least amount of money.  I might even be making the choice to suffer through the end.  I might have had to choose to die of a curable disease as so many people in this country do, because I couldn't afford to be healthy again.  Before the ACA, it would cost me more in a month to have health insurance than all of my other living expenses combined (over $1,200/month) if I could even find someone willing to cover my preexisting condition.

When you say you are against healthcare reform and the Affordable Care Act (aka Obamacare) this is what you are wishing for me.  You are thanking your lucky stars that I didn't have it worse but wishing if it had been worse that I would die as quickly as possible to save on medical costs.  This is what it means to me when you say it's not the right time for healthcare reform, this is what it means to me when you say the ACA is only for people who want handouts, this is what it means to me when you believe the lies that greedy people spread that we cannot afford healthcare for every American Citizen.  You are saying to me: In lieu of tremendous good fortune I wish you pain and suffering, and death.

If you truly loved, if you truly acted through and thought through love, you wouldn't wish this on me.  I wouldn't wish this on my worst enemy.  I wouldn't wish this on Gus, the 4 year old with a brain tumor, or the 23 year old kid who died of streppe throat.  I wouldn't wish this on you.

I implore you to please think with your hearts.  Think with love, with compassion for everyone because you will be surprised how many people you know whose life would be better if they could just afford to be healthy.  Our system is broken and it's not going to get better without change.  We have to change our hearts and our thinking.  We have to love one another more than we fear what greedy people tell us to fear.  I need healthcare reform.  So many people need this.  If you truly loved me, you would want this for me, not death and suffering.

Phase 3: Radiation Treatment (Part 2)

My radiation toothbrush.

I had meant to write this sooner, but this past week has been nothing short of exhausting. I've had to be very careful with what I do each do so as not to run out of energy before the necessities get taken care of.  As it turns out, I have some great news to share today so it's a good day to write this.

But first let's rewind...

Quarantine!

Last time I wrote I ended with me on my sofa, glowing like a lightbulb.  Because I was radioactive with enough juice to kill not only my cancer but any remaining thyroid cells, I was also dangerous to every living person around me.  In large doses I could have burned out their thyroid, or in small doses put them at increased risk for the thyroid cancer.  In order to protect my loved ones (including my cat) I had to do the following:

• Not travel for long periods of time with anyone for at least 2 days including cars, mass transit and airplanes.  

• Sleep in a separate bed for 4 nights.

• Flush the toilet twice after each time I used it and wash my hands thoroughly.

• Rinse the shower after every use.

• Minimize contact with other people for 4 days.

• Use separate towels and other linens for 4 days.

• Hand wash all of my dishes separately.

The two biggest dangers were sweat and saliva.  I had to be careful to keep anything that touched my skin separate from anything else so I kept all of my clothes and towels in a plastic garbage bag.  My boyfriend slept in the spare room, and so did the cat.  She was very put out by the fact that I as ignoring her all week.  We arranged it so that my boyfriend was always showering first and me afterward so it would be as long as possible between shared uses.  I would let the water run for 10-15 minutes after I got out just to make sure it was good and rinsed.

I also bought a Hello Kitty toothbrush at the dollar store to use during this time and a new bath poof to replace my current one once the 4 days was over. I used separate everything: separate hand towels, separate dish towels, separate beds, separate sides of the living room.  I tried to avoid using anything disposable like napkins or plastic forks. Even though my dose was just a little over a quarter of the normal dose, it  is always better to be safe than sorry.

Then on Sunday I had Radiation Cleaning Day.  I stripped the bed and washed all of the linens, washed all of the clothes and towels I'd worn for the past 4 days, and bagged up any items like the toothbrush and bath poof.  Those items will sit in a Ziploc bag for the next month before they are safe to throw away.

Honestly, I had it relatively easy even though sleeping in separate rooms sucked and having to always be watching what I did with my dishes and everything else I touched. It used to be that they would quarantine you for a week with no contact with anyone and you had to collect all your bodily waste during that time so they could store it in a lead lined box for a month before it was safe to dispose.  These days it's considered safe to go through the sewage system so if I had to use something disposable I either had to flush it, wash it down the sink or store it in a plastic bag for a month.

Full Body Scan

Yesterday was both the two month mark since my thyroidectomy and my full body scan. The idea with the scan is that if there is cancerous cells anywhere else in the body taking up the radiation it would light up like Christmas.  The machine looked similar to an MRI, but about half the size.  I could feel the sides of the tube when they put me in. The worst, though, was that after being put in the tube they lower a plate to within about a quarter of an inch of my face.  I am claustrophobic so this was not awesome, but  I can usually logic my way through the panic.  I kept my eyes shut and that seemed to help but the entire left side of my face was twitching with the effort.

They did two scans.  The first was twenty minutes and went from my head down to my waist.  The second they had me lay with my head tilted back and they focused just on my neck.  After the radiologist approved the images I hopped off the table and headed back home.

One of the things I love about Virginia Mason is that they are very up on the current technology.  Instead of waiting a week to get my test results, they're posted to a website for patients as soon as they're submitted.  I checked my messages today and this is what I saw:

"Your scan shows no evidence of any metastatic thyroid cancer. Excellent news."

So that's it!  I'm done with cancer treatments for the next several months.  I am still not "cancer free" as of yet, but in a year I hope to get that news, too.  I also received the results of my thyrogen test that was done before the radiation.  It showed that my thyroglobulin levels were already very low which was a good sign.  They also found some antibodies that indicated I probably had some sort of autoimmune disease at the time my thyroid was removed.  It's a strange consolation in that if it had stayed I would have had more severe problems in the future even without the cancer.

Phase 3: Radiation Treatment (Part 1)

Bonus points if you recognize this movie.

The Morning Of

My day started with being woken up an hour before my alarm went off by the sound of my landlord ripping up our neighbor's deck, which shares a wall with our bedroom.   He'll be doing our deck tomorrow and the next day so I'll get to look forward to that for the next few days (and also not being able to leave my house because the deck is our "front porch" and is about 5' off the ground at the doors.  I told my boyfriend that we should just hang a rope ladder off the back deck (also 5' off the ground) and call it a our tree fort.

As I lay in bed wishing I could get back to sleep, my phone rang.  It was the Nuclear Medicine department at Virginia Mason.  Remember that pointless-but-necessary blood test I had on Monday to check if I was pregnant?  Well, it turns out according to state law the radiation must be administered within 48 hours of the test.  I had the test at 10 a.m. on Monday.  My appointment today was scheduled for 11:30 a.m., putting it at 49.5 hours from the time of the test. Thus I would have to go in early to have the test redone because at the time they called (8:45 a.m.) there was no way we were going to get into Seattle by 10 a.m.  This also meant breakfast was cancelled because I needed to not have eaten within 2 hours of the tests/radiation.

I took my thyroid pill and showered.  As I was getting dressed my endocrinologist called.  When I was on the phone with Katie on Monday about the injection snafu I mentioned that I had been feeling very unwell (hair falling out, sick to my stomach, exhausted, etc.) and she promised to pass a note on to him.  We spoke briefly about my symptoms and he ordered some tests so they could check my thyroid hormone levels.  At 10:30 a.m.  I said a silent prayer that I could maintain a pleasant demeanor and off we went to the hospital.

At the Hospital

We arrived at the hospital around 11 a.m., but the parking garage for the building we needed to go to was full so we had to circle the block and go back to another garage under a different building and walk the block back to where we needed to be.  Getting checked in went quickly but for some reason the elevators weren't coming (it turns out security had locked them all down) so after waiting several minutes we gave up and took the stairs to the fifth floor.

When we got there no receptionist was there so I signed in at the desk and sat down.  A little while later the receptionist returned and called my name.  She checked me in (again) and told me that I was early for my appointment so I'd have to wait.  I informed her that I had been called and asked to come early because they had made a mistake and needed to redo one of my tests.  She asked us to have a seat again but I could hear her on the phone talking.  From the sound of the conversation, it seemed like at the very least she didn't know what was going on and whomever she was speaking to might not either.  At this point I felt very much understanding of the term "murderous rage."

Finally, after waiting for another 15 minutes we were called back.  By the reaction I got from the tech, I could tell I had a look on my face that said exactly how I felt.  I always feel bad when I take my angst out on others so I apologized for looking less than thrilled and told her that it had been a rough morning, and that I was both starving and incredibly tired.  She gave me the paperwork I needed for the pregnancy test that I needed to retake and sent me up to the sixth floor.  My boyfriend and I agreed to "f' the elevators" and take the stairs, which is when we bumped into security guards calling "all clear" on the elevators.

Up on the sixth floor we found the lab.  I handed the paperwork over to the person at the desk and let her know that my endocrinologist had ordered additional labs which I would also like to get done with.  The waiting room was packed but the staff was quick. Within ten minutes I was in a room with Amanuel, the portly phlebotomist. There were so many tests ordered that he had to make a check list.  In all, he took five vials of blood.

Then he told me I needed to pee in not one, but two cups.  I told him I wasn't sure I had two cups in me so he grabbed one cup and said, "Fill this one the most, then this one only half as much." Sure, no problem Amanuel!  I won't go into details, but let's just say I rocked this little Lab Test Game Show.

Off we went back to the fifth floor.  I told the receptionist we had returned. I was expecting a wait because we were told it would take 45 minutes to process the tests, but shortly thereafter Yuri the Technician showed up and introduced himself.  He said that the situation was the radiologists were in a conference and wouldn't be back until 1 p.m. and that the radioactive material needed to be brought over from another building. Plus they were still waiting on the test results. The other tech from earlier had let him know I was starving so he said I should go get a light snack and come back at 1 p.m.

I was thrilled.  I dragged my boyfriend off to the 4th floor cafeteria where he got a roast beef sub and a frappuccino, and I got a banana and apple juice because I was still on my low-iodine diet.  Ladies and gents, I can't tell you the difference a banana can make to a person's mood when they haven't eaten in 18 hours.  I instantly felt about 100 times less likely to kill someone with my mind, if such things were possible.  With bellies somewhat satiated we headed back up stairs again.

The Main Event

Back in the waiting room, Yuri fetched us and took us back to meet Dr. Lee, a middle aged blonde, and Dr. Kim a younger Korean man.  They were both friendly and personable.  They ran through the information on the consent forms with us, explained what to do with my toothbrush (more on that later), and how the procedure was going to go.  Basically the only advice they had was don't put the radioactive pill in your hand, shoot it and drink the water.

Once they were done getting my consent, they sent my boyfriend back to the waiting room and took me off to the special shielded room for the administering of radioactive material.  Yuri had me put on a pair of gloves, then he pulled the radioactive pill out of some contraption.  The glass vial containing the pill was in a large metal cup.  He extracted the vial, removed the stopper and handed it to me.  I tipped it up onto my tongue then gulped the water.  He asked for the gloves back, told me to call the number on the paper if anything felt wrong, and off I went.  After the four hours of chaos it took to get to that point, it was mildly anticlimactic.  

I gathered my boyfriend from the waiting room.  We took the stairs down to the lobby and exited out a side door.  We managed to walk the block back to the other building, take the elevator down to the 4th level of the parking garage, and get in the car before it hit me.  It started as a burning sensation in my neck before spreading throughout my body.  Three hours later, I still feel the rosy glow of radiation as though I am laying out on a beach in 115 degree weather and not inside my apartment on a cloudy day.

The radiation will do its job within the next 24 hours, by which time most of it will have left my system. For the next 4 days I will be highly radioactive.  In about eight days I should be safe to be around again, but for the next 80 days I still might set off bomb detectors at the airport.  

Despite how difficult the past ten days have been with the crazy diet and the exhaustion, this is so much better than it could have been.  The next step from here is a full body scan in one week which I feel fairly confident will show no additional disease.  I'll also be waiting on the results of the blood tests related to my thyroid hormone levels which hopefully will explain why I've felt so miserable.  There's some concern that I might have an infection or some other problem because of the pain and swelling I've been having  so I am to call the surgeon and make an appointment with him as well.  For now, though, I'm enjoying eating whatever I feel like and then I'm going to go sleep.