The Fault in Our Stars: Writing About Cancer

Writing about Cancer means you have to know how to laugh at yourself. There is a LOT of drama involved with cancer, but all GREAT dramas come with comic relief. Since it is unlikely other people will laugh at your cancer (it just seems crass), you will have to provide your own comedy.

I have had some issues writing about cancer. A lot of blockage and a lot of procrastination. There have been month-long droughts in this blog. And this blog is the easiest way for me to write about cancer, largely because I make fun of myself every chance I get.

I recently started reading The Fault in Our Stars by John Green. The reason I haven't finished reading it is because I was reading the "look inside" clip on Amazon, and now I have to wait for the actual book to ship before I can read the rest. So far it is excellent. A cultural phenomenon. Why? Because it is hilarious! Green has the gall to poke fun of cancer, even its darkest facets, and people gobble it up because no one in their right mind can get through those depressing cancer-victim-journeys-toward-death-with-a-smile-so-family-is-at-peace narratives more than once. (Anyone read My Sister's Keeper twice? Anyone??)

** Since last working on this blog I have FINISHED reading The Fault in Our Stars. I will commence reviewing the book without spoilers because I hate spoilers.

Wow. I have to (kind of) take back what I said before. Good writing about cancer must include laughter. GREAT writing about cancer must inspire both laughter and tears. This book made me laugh my ass off and cry my eyes out. Hazel Grace and Augustus Waters are two of the most genuine and emotionally compelling contemporary characters written into life and they are scribed indelibly in my heart. Hazel Grace is a teen with thyroid cancer, (and as far as I know may be the ONLY fictional character with thyroid cancer) which has metastasized to her lungs, requiring her to carry an oxygen tank and leaving her perpetually breathless. Augustus Waters traded a leg to bone cancer. They fall in love. This is NOT a typical teen romance.  A) There are no vampires or werewolves. B) And yet, these are no ordinary teenagers.

The protagonist and her love are lovable because of their attitudes towards their illnesses. These are not people who take life for granted, dwell on the bad, or waste time feeling sorry for themselves. While the few angsty, volatile moments they have are entirely understandable, for the most part these are the people we want to be (or would want to be) in moments of crises. They neither rail against fate nor submit to it. They allow themselves to be ill, but do not let it change who they are. They are (almost) impossibly strong in weakness, joyful despite pain, defiant in the face of death, and somehow Green accomplishes this without the slightest hint of bravado, or sap, or other excessive emotional narrative traps easily fallen into. Every bit of dialogue and action stays true to the characters, with whom you fall more in love with every page-turn. Isaac, who initially read as a simple foil character to the heroes and somewhat obvious symbol of social and psychological blindness, despite his more realistic and less appealing sensibilities, becomes a third unforgettable, about whom you will truly care.

DO NOT READ THIS BOOK IMMEDIATELY AFTER YOUR DIAGNOSIS

So here is the caveat. This is NOT an easy book. In some ways, it was one of the most difficult books I have read, in terms of emotional and psychological impact. I won't go into detail, but the sadness quotient is comparable to that of Tess of the D'Urbervilles, Anna Karenina, Tinkers, The Book Thief, A Tale of Two Cities, or The Women of Brewster Place, to name a few books that have caused me to sob for a long time and to reexamine life and its meaning in a philosophical, often existential way.

As the title indicates (a quote from Julius Caeser) there is a star-crossed lovers element to the plot. This is not only Green being clever, but also him hinting to his audience: "prepare yourself for a not-so-happy ending." So I don't think I'm spoiling anything when I say that at some point in the book you will be very, very sad. And possibly horribly angry at Green for having such an impact on you with his beautiful language and for not using that power to make you feel cloud-floating happy. All I can say is DO NOT GIVE UP ON THE BOOK.

I  had a very Gwyneth-Paltrow-as-Emma struggle ("I love John!" "I hate John!") with the author at the crisis. I put down my book and cried and could not return to it for another day. But I was very grateful when I did return for the conclusion. Green fully redeems himself for the heartache caused by the words of wisdom encapsulated in the last pages. Re-reading them for the sake of this blog causes me to tear up.

Green's writing is unequivocal evidence of having experienced personal loss. But he learned something from this loss important enough to pass on to the world. He tells us that that horrible, heart-wrenching, gut-stabbing pain we feel when losing, having lost or remembering the loss of someone we love is completely worth it. That we would not regret a second of time with that person or the smallest measurement of affection because it means that we loved with passion, we truly lived.

Cancer takes away your sense of security.

But it also gave something back to me. It gave me an appreciation for every day unlike what I had before. It gave me an intense desire to spend as much time as possible with my friends and family, to never waste a moment. There are people in my life whom I do not believe I could live without. I believe their loss would tear my soul to pieces. I believe it will be the most devastating pain in my life. And I could not be more grateful.

Call for Cancer Resistance

Cancer Awareness is not Enough

September, Thyroid Cancer Awareness Month, has come and gone. Several times during that month I started to blog about awareness and how important it is and blah blah blah. But a few sentences in it would start to sound blah blah blah to me. If I'm not convinced, there is no way you are going to buy it. And I DO absolutely believe that awareness is important. I think I've reiterated its importance in just about every post. Which is why I felt like I needed to say more than what I've already been saying and possibly more than what I myself know.

If you don't have cancer, you probably know someone who does or you wouldn't be reading this blog. Unless you are a hypochondriac or stumbled upon this while looking for horoscopes. So chances are you are aware of cancer.

If you have cancer, you are obviously aware of it. But you want more. You want action. Because just knowing about it isn't going to save you. In fact, you were a perfectly healthy, relatively normal person BEFORE knowing about your cancer, and knowing about it has screwed everything up.

Terrible confession of the day: I used to joke about cancer. I still joke about MY cancer a bit, with complaints about radiation (no spidey-senses yet) and what-not, but not in the same way. It is a little too close to home now. Before I had cancer, I used to tell my friends that of course I was expecting to get cancer, everybody got cancer, so why not have another Twinkie? When I was very young, cancer was a kind of status trading-card of sorts, i.e. how many grandparents have you got? 3, 1 died of breast cancer OR my dad works in pharmaceuticals and my uncle Herbert has skin cancer. Not really all that different from the other family facts and sometimes considered more interesting.

 But I doubt you are shaking your head and clicking your tongue at me right now. Because chances are you have joked about it too.

We Take Cancer for Granted

Don't quote me on this, but I think I am the only person who really takes my cancer seriously. With the possible exceptions of my parents. (And since reading this blog, my dad has strongly objected and fairly pointed out the many ways he has supported me through this ordeal. He will even wear a bracelet. So I am making him an honorary member of my caring club.) I felt a bit discouraged during awareness month when I discovered that my friends and family did not want to wear THYCA wristbands or display THYCA car stickers, even if I bought them for them. I will give a shout out to my friends Christina and Donna, who helped me distribute Neck Check cards. It's not that my family and friends don't care about me. It's just that my cancer is not that big of a deal to them. Thyroid cancer is supposed to be the "good" cancer (HUGE misconception). I didn't lose my hair. I'm doing lots of stuff, possibly more than before. I am officially in remission. So when I do something as radical as change my diet to get healthy, they think I'm crazy. Some of them even seem to take it a bit personally. My own husband thinks it is completely unnecessary and selfish.

And then there is society. As I've complained before, Thyroid Cancer tends to get the shaft in the contest of worthwhile cancers, and it's no use pretending such a competition doesn't exist. Breast Cancer is obviously the gold-medal standard. The whole NFL supports their cause. Thyroid Cancer doesn't even have a walk-a-thon in DFW, the largest metroplex of the South. With over 6 million people, and thyroid cancer affecting 1 in 97 people, we have the potential to have 67,000 persons with thyroid cancer (keep in mind I am not a math person). And most of them do not even know what the thyroid IS!

And it isn't JUST thyroid cancer. It is ALL cancers. I was not the only little kid who just ACCEPTED that people, especially old people, get cancer and die from it. I was not the only teenager who laughed because I just ACCEPTED that I would one day get cancer myself. And I am certainly not the only adult who has had a rude awakening when I in fact found out that it DID happen to ME.

We joke it away, because it is a bad thing and what else can we do? And at the same time we secretly believe it won't happen to us.

So here is my 1-2 punch to cancer:

1. BELIEVE THAT IT WILL HAPPEN TO YOU. 

If it doesn't, great. But you should care like it's your cancer. And keep this in mind: 1 in 2 men will get cancer; 1 in 3 women will get cancer; and 1 in 4 people will die from cancer.

2. BUT DON'T ACCEPT IT. RESIST.

As much in your heart and head as anywhere else. Resistance has to start somewhere, and all the money in the world won't fix things if we don't believe it can and should be fixed.

Can You Resist Cancer?

Okay, awareness is an important first step. Keep sending out the fliers and telling people you know and signing up for those walk-a-thons. But whatever you do, don't accept cancer as the inevitable. As a norm or a natural force like the wind. Fight the wind! Buy a windshield or a windbreaker or a window! Okay, the metaphor has been stretched too far.

Basically, the power of cancer lies in our thinking that it cannot be stopped. It is like He-Who-Shall-Not-Be-Named. In spite of all these fundraisers and t-shirts and ribbon stickers and sponsorships, we still just nod our heads to cancer, only outraged if it takes our closest loved ones from us, and only then if they are under fifty.

 I think I've mentioned before that I read comedian Albert Brooks' novel 2030, which suggests that cancer is a natural way of keeping the population in check and ensuring that people don't live too long. But it does not feel natural to me. It feels like the product of the chemicals and toxins that have also become normative in our society.

What happened to the Erin Brokovichs? Are we only outraged by cancer when it happens because of the pollutants soaking dumped by major chemical corporations? When it happens to a large number of people in a small area? When it happens to children?

With the anniversary of Steve Jobs death 3 days ago, there has been a bit more talk about cancer. To me, it is sad that it takes a celebrity death for some outrage to be expressed. But at least it is there.

Author and oncologist Siddhartha Mukherjee wrote an article titled "I'm Sorry, Steve Jobs: We Could Have Saved You," in which she argues that the deficit in cancer research funding is preventing us from finding treatments and cures. This article includes an impressive chart showing that the U.S. spent twice as much money on the Middle East conflict EVERY MONTH ($12 Billion) in 2008 as the leading cancer institute got that same YEAR ($5 Billion). She also mentions a rather impressive-sounding breakthrough in cancer research and the possibility that it will not be fully explored. 

You might say that the NFL sponsorships and ribbon-stamped milk cartons are strong indicators that our society does not accept cancer. I am not so sure. In fact, I believe it is now a kind of badge to wear. A do-gooder stamp that says "I am a nice caring person" or "I am a member of a sorority" or even "I am manly enough to get away with wearing pink."

Thanks to these breast cancer campaigns, cancer has a cool factor. It has catch phrases. TV time. Sex appeal.

It seems to me that with all the noise we are making, our hearts just aren't in it.

When you donate money or buy the specially-labeled yogurt cup, do you actually expect results? Do you think that you will see a news bulletin in the near or far future announcing that a cure has been found? Or do you secretly think that cancer is just one of those things that has always been around and will always be around.

Have we given up the fight before it even begins?

WHEN IS CANCER OKAY?

The answer should be: NEVER.

Death is inevitable. But painful deaths from invading tumors are not. And if you don't find old people all that sympathetic (shame on you), think about the fact that it isn't just grandparents anymore. More than 10,000 U.S. children are diagnosed with cancer annually. Childhood cancers are on the rise. Thyroid cancer, which largely affects young adults, is the fastest increasing cancer. It is now common for people in their 20s and 30s to be diagnosed with cancer.

But should this become normative? NO.

 Obviously, I do not have all the answers. At the end of the day, I have to climb down from my high horse and admit that I have not solved any world problems. Perhaps the best I can say is that I am aware of them.

But in my heart, a resistance has started. Will you join me?

It's Not That I'm Afraid of Cancer

It's just that I feel a little less invincible. At least, this is the way I've been trying to explain my recent "health kick."

My mother got back from CA yesterday, which means that today was DAY ZERO of our mostly vegan diet. I say "mostly" because chances are, if we are confronted by a piece of free, non-vegan birthday cake, or someone takes us out to a nice fish dinner, we are going to cave like dixie cups. But at least we are aware of our weaknesses. That's what counts, right?

I have spent my life sneaking food, afraid of the judgments I'd be faced with if caught with a Snickers bar or mouthful of peanut M&Ms. Turns out, people on the other end of the spectrum are judged just as harshly. The general reaction to my going on a six-week vegan diet has been that I have lost my marbles.

Honestly, I was one of the loudest protesters of this diet a few weeks ago. To me, veganism seemed just as unhealthy as one of those Hollywood liquid diets. But for all the reasons mentioned in my last blog, I have decided to give this a try.

It is one of the ways I am trying to fight cancer, which oftentimes feels like some omnipotent fate-weaving force, not to be looked at directly, nevertheless challenged. Cancer makes you feel vulnerable. It is a betrayal by the body you cannot escape.

The only way to beat cancer is to be healthy. This is not as paradoxical as it sounds. I have an unhealthy (missing, in fact) thyroid. But I have healthy legs because I ride my bike three times a week. I have healthy arms because I lift weights. I have been healthier on the inside because I have been eating whole foods and calorie counting. And I believe I will be healthier still after trying veganism.

Ultimately, both my Mom and I feel that the most important change to our diets that we can make will be reducing our intake of processed foods. And since meat and dairy are often hyper-processed by the time we consume them, they are to be avoided more than other foods. This is an experiment.

Today's experiment went like this:

Breakfast: 1cup of Cheerios with 1/2 cup of almond milk
Lunch: Orange Quinoa and Black Bean Salad
Snack: 2 Vegan Oatmeal Raisin Cookies (okay, 3)
Dinner: Another cup of Orange QBB Salad

So I think I did pretty well. Except for the whole giving in to my sweet tooth and making a batch of cookies thing.

My mom had a harder time because she didn't have time to cook and just had plain beans and rice to eat for lunch and dinner.

It tastes much better than it looks, I promise!

I've come to believe that all diet success comes down to spices. I love experimenting with flavors; the more flavor, the better. My QBB Salad was awesome, but only because I added a ton of flavor. This is actually the first time I've ever eaten Quinoa (pronounced keen-wa; I went around saying kwi-no-ah for days before people figured out what I was talking about). By itself, it is not that flavorful, close in consistency and taste to overcooked rice. But I added orange juice, chili powder, tumeric, salt, pepper, green onions, and Tony Chachere's and BAM--awesomeness.

Even my nay-sayer husband said it was delicious.

My downfall today came when I went to Whole Foods fifteen minutes before closing. This sent me into panic mode, which is never a good mode to shop in. I got the fresh fruits and vegetables on my list, some lentils, some millet (pronounced mil-it, unless you are French and then you can probably get away with mil-ay), more quinoa. But then I started just kind of snatching things off the shelf that said "vegan" on them.

I ended up with a bunch of processed vegan foods, which, if I had really thought about it, are not all that essential to this diet, but seemed like must-haves in my supermarket-sweepstakes moment.

Here is the rest of what I bought (the ones with stars by them were actually on my vegan essentials shopping list):
- Vegan Mayo * (I have had unpleasant experiences creating my own mayo when on the no-iodine diet; turns out I have an aversion to the smell of vinegar.)
-Vegan Butter * (I don't actually eat a lot of butter, but I figured I might need to cook with it and I certainly am not about to churn my own, even if it is made from soy.)
-Almond Dream No-Dairy Ice-cream (whoops)
-Gluten-free Organic Graham Crackers (I had a coupon and it didn't occur to me until later that regular graham crackers are vegan anyway.)
-Canned black beans (boo, canned food)
-Frozen mixed veggies * (fresh is wonderful, but goes bad too quickly)
-unsalted cashews *
-2 Amy's frozen burritos

So I guess I'm covered as far as vegan junk food goes. Sigh. It doesn't really make sense to cheat on my regular diet so I won't cheat on my vegan diet, but again, I plead sheer panic and flashy-label brainwashing. At least most of the junk I bought is junk that lasts forever. I'll start with all the fresh stuff.

Cheers to all you vegans for letting me hop your bandwagon!

I'll let you know how I'm feeling six weeks from now....

Is There a Cancer Conspiracy?

Does Corporate America Secretly Want You to be Sick?

Sounds pretty Orwellian right? I'll admit I've been reading manifold dystopian novels lately, but that isn't the only reason a cancer conspiracy, or really an overall keep-people-sick conspiracy, is beginning to sound plausible to me.

When you are diagnosed with a disease, one of the first things you go looking for is a cause. "Why me?" you wonder. In my case, the doctors explained it away as genetics (I have a strong family history of thyroid cancer). But before they knew about my family history, they basically shrugged their shoulders. Like it doesn't matter what the cause is as long as there is a treatment. Why prevent what can be fixed via expensive medical procedures, most of which are not covered by insurance?

But it is human nature to seek answers, and if you can't blame your genes, you usually blame yourself. Why didn't I eat more superfoods? Why did I microwave so many plastic dinners? Why didn't I exercise more? After all, the media tells us that these are the quick fixes to obesity, diabetes, heart disease, cholesterol, etc., so why not cancer? You may already be thinking these things, but if someone else dares to suggest that your bad eating caused your cancer, you want to slap them.

This is a dangerous road to go down. No one deserves cancer. And everything we consume, down to our drinking water, has a certain level of carcinogens in it. So who is to say whether that strawberry poptart was the last straw, the thing that told your body it couldn't win the fight?

HOWEVER, what if we really are slowly poisoning ourselves? What if poptarts (or candy bars or hamburgers or cheese fries, etc.) are not just "junk food," but food filled with addictive chemicals and cancer-causing animal proteins and dairy?

The Forks Over Knives Theory

This is the basic thesis of the Forks Over Knives lifestyle changing documentary/ diet program. The idea that the foods we eat are not just making us overweight, but killing us with terrible debilitating diseases that are reversible, is what makes it different from the usual Jenny Craig, Weight Watchers, Atkins dieting phenomenons.

A lot of people see FOK as an extreme lifestyle. After all, it is essentially veganism. You are allowed very little animal protein or dairy (5% max). When my mom told me she would be giving up meat and dairy, my reaction was basically "Yeah right, crazy-pants."

I have had a strangely high number of vegetarian friends and roommates in my life and have never been tempted to give up meat myself. I don't consume a lot of fatty red meats, but I do eat a LOT of fish and chicken, which are HEALTHY, right? Hmmm..... Now I'm not so sure. Yes I believe people are naturally omnivorous. But it seems to me that even once-healthy and natural foods are no longer safe due to toxins, hormones, steroids and preservatives.

Here are the basic arguments of FOK:

1. The foods we eat, especially animal-based and processed foods (ABAP), are directly causing most, if not all, degenerative diseases.
2. These same diseases can be controlled, or even reversed, by rejecting ABAP foods and turning to a whole-foods, plant-based diet (WFPB).
3. The ideas that we need meat for protein and dairy for calcium are capitalist lies promoted by corrupt corporations who want us to buy their products. 
4. Food and health care corporations actually benefit from keeping us sick and have no incentive to promote healthy eating among citizens (globally). 
5. While genetics predisposes individuals to diseases (like me), whether the disease actually manifests or not depends largely on that person's diet. Hmmm.....

Their evidence includes:

1. The research of Dr. Campbell (nutritional scientist), who studied children in the Phillipines and found that those eating animal proteins got liver cancer while those who ate WFPB did not. 
2. The research of Dr. Esselstyn (breast cancer surgeon) who also conducted studies where WFPB patients did not get the same cancers as ABAP patients.
3. The combined efforts of these doctors, who now use and promote the use of WFPB diet as medicine for degenerative diseases. 
4.  Dr. Campbell's The China Study, a twenty-year survey of diseases and lifestyle factors in rural China and Taiwan that details the connection between nutrition and heart disease, diabetes, and cancer.
5. A half-dozen "reality patients" who are filmed while on the WFPB diet, and who lose weight, reverse diseases and eliminate medications.
6. Other studies mentioned in the film and an impressive list of celebrity/ expert advocates of the diet.

Now if you are like me, you are probably thinking something along the lines of NO WAY am I going to give up ice cream and sloppy joes for the rest of my life. Not even if I wanted to.

The typical carnivorous counterarguments to FOK and other veggie plans are:

1. Humans are naturally omnivorous (we have those nice shiny canines).
2. Humans need meat and dairy (why? because the government says so).
3. Everything we consume is carcinogenic (we're doomed anyway). 
4. Vegans are scary-thin skeletons who shove scary-gross pamphlets in my face (ack!).
5. Meat lover's pizza (yum).

Etc. And then there are whole lists of counter-counterarguments from veggies about world hunger, pesticides, antibiotics, natural resources, etc. 

When in Doubt, Cut Back on the Processed Foods

I am not entirely sold on FOK yet. But the notion of "consumercide" makes sense to me. If executives of Nestle and McDonalds and Kraft have infiltrated the boards that determine American health standards (the USDA, the FDA, the health pyramid, etc.), then of course we are going to be manipulated into making unhealthy food choices. We already are manipulated by commercials, deceptive packaging, and misleading labels like "Fat Free" and "Sugar-Free." Have you ever noticed those magazines where the front cover says "Lose 25 pounds!" AND has a picture of a new chocolate cake recipe on the front cover?!

There is no doubt in my mind that processed foods are bad for you. There is no doubt in my mind that animal protein and dairy are bad for you in excessive amounts, and that the processes used to raise and feed and kill these animals are suspect, if not inhumane and unsafe. There is also very little doubt in my mind that if I attempt to completely eliminate two food groups from my diet, for LIFE, I will fail.

However, I have signed on to do a 6 week trial FOK diet with my mom when she gets back from California. Already, I am a bit deterred by the strange, difficult-to-find ingredients in the FOK recipe book. It took me two hours to shop at Walmart, and I never did find brown rice syrup or tahini (which I now know is an Indian herb, NOT sold at Walmart).

This is not going to be easy. But, if I can truly eat my way to better health, garner more energy, lose weight and not have to worry about cancer recurrences, skipping that once-a-month burger might actually be worth it....

Ride for Life: 2012 Tour de Cure

CHANCES ARE YOU KNOW SOMEONE WITH DIABETES

Well I survived again! Today (Saturday) was the American Diabetes Associations big bikeathon, or as they like to call it, the Tour de Cure. I started doing this last year after my step-father-in-law Leighton told me about it. He has diabetes. Chances are, you know someone with diabetes. Or have at least sat next to one in the waiting room of your endocrinologist’s office. In fact, many people with diabetes also have thyroid problems as a result of their disease. Leighton is on a higher dose of Synthroid than I, and I have no thyroid!

The Tour de Cure is AWESOME even though it is extremely difficult and SOME family and friends (AHEM) told me I was crazy to do it. The SOLE reason this event is a matter of survival as opposed to just fun exercise for a good cause is because some crazy person decided to hold the Dallas ride at the end of July. July 28^th actually has no significance to the ADA. In fact, the Tour is a nationwide event and many states cooler than ours hold their event from February-June and August-October, any of which would have been far better than JULY. I clicked on about thirty different locations on the event map and found only ONE other location that rode on July 28^th, and that was in Hillsboro, Oregon. Guess what the high in Hillsboro was today. 76 degrees. 76!!! Our high was 106.

If the ADA had a suggestion box, I would be sending a lot of letters. Anyway, I wanted to do 64 miles this year, but A) did not ride further than 35 miles when training and B) did not want to DIE of heat stroke. If it were in winter maybe. New York and New Jersey have rides in October. How does that make sense??

YOU CAN STILL BE A HEALTHY PERSON (WITH A DISEASE)

Okay enough griping. Tour de Cure really is a fun and fantastic event. It is held at Texas Motor Speedway, and while I am not a car racing fan, it is pretty cool to bike a round such a big fancy track. They let us do a lap around the track and then the rest of the ride is along 1-2 lane country highways next to fields of sorghum and sunflowers. There are two rest-stops at the 10 and 16 mile marks, where wonderful volunteers give you food and water and cold towels and sunscreen and mist you with sprayers and let you sit in the blessed blessed shade while you catch your breath. To the right is a picture of the starting line. I am in there somewhere.

And once you survive the event, you get to sit in more blessed shade and drink more water and eat and listen to a band and visit a million booths giving away free merch and massages. I’m still mad at myself for not getting a massage while I was there.

Oh and I got to ride next to a guy on a penny-farthing bike for a while (Pictured left. The bike, not the guy). So if that doesn't raise my cool status I don't know what does.

This year I rode 32 miles in 3 hours and 8 minutes. That includes stopping 3 times to rehydrate, eat, sit, get sprayed in the face with water and use the port-a-potty. I completed the last 10 miles in 33 minutes. Both of these are personal bests for me.

Yes, I am tooting my own horn. But this is a HUGE improvement over last year, when I felt a bit weak and goofy. I took up bicycling as a hobby after my cancer diagnosis because it makes me feel absolutely and solidly alive. Even though you can feel perfectly healthy at the time of your diagnosis, cancer threatens to take away all those feelings of health, security, strength, independence. Until you are convinced that you ARE the cancer. That it has taken over your identity and no one (including yourself) will ever see you as a unique, productive or desirable individual again.

Cycling is my way of countering those feelings. Being outdoors, using all my senses at once, I become healthy again: feeling the strain of my quads as I push forward, hearing my breath pushing rhythmically against the air, smelling the sun-soaked earth and my sun-soaked skin, tasting the life force that is icy cold water and seeing myself reach each goal I set, go a little further than I thought I could. Those experiences have been everything. Someone so alive cannot be sick. Someone so alive cannot be defeated.

Last year, I was mostly in the back and would just try to follow someone who didn’t look too muscular. I did not finish until about 1:30, meaning it took me about 5 and a half hours to complete. The moment I remember most distinctly is finding myself along on a country rode and having a car full of teenage girls drive up next to me, cheering me on, saying “You can do it!”as if I didn’t quite look like I was going to make it. No one would say “You can do it!” to Lance Armstrong. He KNOWS he can do it.

This year, I would pick a muscular person, the kind with the square calves and bulging biceps, and tell myself to follow them, only to end up PASSING them! And I kept right on passing people. I definitely got passed, and the ride is not meant to be competitive, but I wanted to have a decent time and I think I accomplished that goal. I found myself going speeds I have never been able to maintain in the past.

Here is what I suspect were the keys to my cycling success:

1) The whole crowd aspect of a group-ride is super motivating.

2) I kept humming “Situation” by Yaz in my head, a strangely excellent beat for exercise. Mostly I was just singing “move out” over and over, especially when going uphill.

3) AND I just really wanted to get out of the heat. So I guess if the event WERE in October, I might not have been as motivated to ride quickly.

DONATE TO SUPPORT THOSE WITH DIABETES

Here is my “Sick people should stick together” plug: It feels good to help a cause even when it’s not your own. I have raised $355 so far. If you would like to donate, there is still time! They are collecting donations through August. Just click the icon below if you want to show your support for those with Diabetes and promote the research and awareness of this disease!

DREAM BIG THYCA CYCLERS

The next step is to start a THYCA fundraising event! How amazing would it be to have something comparable to the Tour de Cure?! I have not given up on my dream of a THYCA cycling team and eventually a bikeathon.

It reminds of Pollyanna dreaming of the bazaar:

“Picture it. Darkness. And out of the night,

50 bicycles appear moving down the square.

And hanging from their handle bars, two hundred,

TWO HUNDRED, gorgeous Japanese lanterns!"

Be Your Own Health Advocate

I credit this title to my friend Donna, who works in health care. I wanted to write a post cautioning against blind faith in doctors and diagnoses and this sounds much better than "Don't Trust Your Doctor." Chances are your doctor may be a kind wonderful person with all your best interests at heart. My mother-in-law, one of the nicest, cheeriest people I know, is a doctor. But you should still be your own advocate when it comes to your health.

What Do I mean by Health Advocate?

Take a proactive approach to all stages of health and illness: prevention, diagnoses, treatment, and again prevention. Take a daily vitamin or two. Eat more fruits and veggies. Exercise. Research your symptoms. Go ahead, WebMD that sucker. Just be sure to write down all your symptoms first, so you have in mind the difference between what you are actually experiencing and 101 more seductive sounding diseases you might have, according to your inner hypochondriac. If you aren't incapacitated by your illness, maybe try a few home remedies first. And if you do make an appointment with your doctor, bullet list symptoms and questions you want to discuss. Mention your relevant family history two or three times. If your Aunt Myrtle recently tested positive for such-and-such, go ahead, ASK if you should also have the test. It never hurts to ask.

Your Doctor is Not God

If you are like me, you have probably been giving your doctor both far too much credit and far too much responsibility.It is only over this past year that I have reexamined my perception of doctors. Typically I only go to the doctor when I believe something is wrong with me. I go the appointment believing that if I list my symptoms and the doctor pokes and prods me, they will unequivocally know what is wrong with me and how to fix it. WRONG. Doctors are human and thereby make mistakes. They are working off two things: their own medical expertise and the context you give them. Even the best of doctors may never have encountered, experienced or researched your condition and the fewer details you give them, the more it is like guesswork.

Why My Doctor Missed My Cancer

One of the greatest conundrums I have met with since my cancer diagnosis is the question of why I was not diagnosed sooner. Obviously, my doctor and I were both at a disadvantage, given that neither of us knew about my family history of thyroid cancer. I have two aunts with thyca, which I found out only after my throat sonogram. However, I did go to my PCP 6 months before my diagnosis, specifically for the purpose of getting tested for thyroid conditions. My mom insisted that a faulty thyroid could be the source of the many health difficulties I was facing. So I had my blood tested for TSH levels (Thyroid Stimulating Hormone) and everything came back normal. 

This is the part that confused the heck out of me. How could my test come back NORMAL? I had severe Hashimoto's Disease, a 3cm malignant tumor, and 9 malignant lymph nodes. I must have been (and certainly was displaying the symptoms of being) severly hypothyroidic at the time I was tested.

Well, the other day, I found the answer. Or at least as close as I am ever going to get. I was browsing the internet for articles on Hashimoto's and found this article on TSH testing. (The article is actually a series of 8 slides, and well worth reading in full. This links to slide #6.) Well, guess what! According to Mary Shomon, founder of Thyroid-Info.com, "Currently, most laboratories in the United States still use the old 0.5 to 5.0 range as their normal reference range for the TSH test."

So what, you ask? "New" guidelines, recommended by the American Association if Clinical Endocrinologists, state that anyone with a TSH level between .3 and 3.0 should be flagged for further testing and treatment. These standards were changed in 2002!!!! But today many doctors either do not know about these guidelines or purposely ignore them. I can't fathom why they would simply ignore them; too many sick people = inconvenient? The article goes on to say that the "AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now."

As long as these standards are ignored, people experiencing hypo and hyperthyroidism are not being diagnosed because they fall into the old normal range. Like me. My TSH level was a little over 4.0 (I'll have to check my records to find out the exact #.)When my doctor came back and said everything was fine, I just accepted it. I took her word for it. I can't help but wonder how long I would have gone undiagnosed if that dog had not bitten me. And how much further the disease would have metastasized.

 The moral of this story is to question everything. If your doctor says you are fine, check and double check. Don't be shamed into suffering a treatable illness! If you have a family history of thyroid disease or multiple symptoms, follow up your test with these questions:

If your doctor is simply unaware of the changes in TSH standards, you can help all their patients, by getting them the right information! This article tells you what to give your uninformed doctor.

If your doctor simply disagrees with today's TSH standards, find another one!

You can even circumvent a doctor altogether and order your own thyroid blood tests from MyMedLab:

• Order Basic Thyroid Profile: Thyroid/TSH, Free T4 (FT4), Free T3 (FT3), Thyroid Peroxidase Antibody (TPO), Reverse T3 (RT3)
• Order Thyroid Followup Profile: Thyroid/TSH, Free T4, Free T3
• Order Adrenal Stress: 24-hour Saliva Cortisol (4 collections) and DHEA-Sulfate

Doctors Forget What it Means to Be a Patient

Medical Degrees do not require communications courses. They Should. I absolutely believe that our health care system and patient satisfaction would improve if doctors had to take at least one course on communicating with patients. Hospitals and medical programs do, ironically enough, offer classes for patients on How to Talk to Doctors (but not often the other way around.) Too often patients leave an appointment confused or fearful when it could have been prevented. The thing is, you HAVE to be your own advocate, because your doctor EXPECTS you to be. Your doctor expects you to tell them everything. In fact, they probably anticipate hypochondriacs, while getting reticent introverts. If you go to the doctor with a suspicion, fear, question or purpose, but never voice it, how will they know?

Something else you may want to keep in mind is that doctors are motivated by money. We all are. Drug reps visit the same hospitals and doctor's offices weekly. They hold lunches in their break room. They leave behind little "freebie" presents of food, notepads, pens, mugs, samples, etc. If someone gives me something, I feel indebted to them. I'm not going to trade my ethics for a sandwich, and your doctor probably won't either, but when prescribing something for you, how likely are they to ignore the brand names that have treated them so well and now decorate their office or even write out your prescription? And of the dozens of times doctors offered me "free samples" of some new drug, I never once thought that maybe it wasn't such a good idea. That is might have more to do with convenience and ease than my actual health. Free is very seductive. 

Where it starts to cross the ethical line is when doctors start prescribing pills and treatments you DO NOT NEED. Like I said before, I have found countless forums on Hashimoto's Disease, where patients have been prescribed unnecessary thyroidectomies. A few of them questioned their doctor's suggestion, looking for second or third opinions, or seeking alternative treatments, but most do not even believe they have an option. They do not distinguish between doctor's words and doctor's orders.

Are You a Fully Informed Patient?

This is the question you should ask yourself every time you visit a doctor. There are a million and one things that I learned about my body, my thyroid, and thyroid care over the last year that I simply did not know before. The best way to be your own advocate is to be self-educated. I'll give you an example.

In an earlier blog, I talked about unnecessary x-rays, known to be a cause of thyroid cancer when delivered in excess. Today's dental standards recommend that patients receive only one diagnostic dental x-ray per year. Unfortunately, many dentists are indiscriminately prescribing these x-rays every 6 months!

The American Dental Association cautions that patient history, health, age, family history, risk and symptoms should all be considered when using x-rays as a diagnostic: "However, the dentist must weigh the benefits of taking dental radiographs against the risk of exposing a patient to X-rays, the effects of which accumulate from multiple sources over time."

Yet, BOTH my husband and his father were refused dental treatment because they refused to get a dental x-ray at their 6 month checkup. Obviously, something sketchy is going on here. And I suspect it is more fiscally motivated than anything. If you REQUIRE that all your patients undergo expensive albeit needless procedures, you make more money. Period. The end. 

Oh! And here is some fine print on the ADA website, you may not be aware of: you should be wearing a thyroid collar during these dental x-rays!!!! Their MouthHealthy website states: ". . .  a leaded thyroid collar can protect the thyroid from radiation, and should also be used whenever possible. The use of a leaded thyroid collar is recommended for women of childbearing age, pregnant women and children."

Did you know that? I didn't! I have been of childbearing age for sixteen years now and I have never once requested a thyroid collar!!!! Don't be afraid to do your own research. Yes, the internet is a tricky place to navigate. There is a lot of unsubstantiated crap out there, and you have to go through a lot of sources and know what to look for in order to find reliable information. Your doctor might even look at your list of questions and printed WebMD pages and laugh. But think of how much better it is to be an active advocate than a silent sufferer!

Mom's Diagnosis: What is Hashimoto's Disease?

2012 is turning out to be a far better year than 2011. My mom does NOT have cancer!!! Thank you to all who prayed and sent good thoughts our way.

Thyroid disease has attacked at least four women in my family and so far we are all strong survivors. Every single one of my mother's eight brothers and sisters has some kind of thyroid ailment, so it was rather unlikely she would escape scott-free. And she hasn't. She was positive for Hashimoto's Thyroiditis. This blog is dedicated to you, Mom, since you asked me to do research on Hashimoto's.

What is Hashimoto's disease?

I went into signs and symptoms a little in my last blog, but did not really discuss the implications of the disease itself. For all the details, read this article. For summary and observations keep reading.

Look at the model on the left. The thyroid on the trachea is an example of what a nice, normal thyroid should look like. The one to the right of it with the ugly red growth is an example of papillary carcinoma in a nodule. The Swollen pink one is Grave's disease. And that really hideous one? The one that's kind of gray-beige in color and looks more like a dog bone than a butterfly? That's the thyroid of us HD patients.

Like other diseases of the thyroid, Hashimoto's is an autoimmune disease that damages thyroid cells. This disease inhibits thyroid hormone production, causing the patient to experience all the glory of hypothyroidism (fatigue, weight gain, sensitivity to cold, muscle pain, etc. (and in extreme cases a tendency to slice your own head open if you believe the "Post Mortem" episode of House. Maybe avoid doctor TV shows after diagnosis; it tends to lead toward paranoia.)).

Unfortunately, the symptoms of hypothyroidism are easy to ignore. Put on weight? Blame that extra piece of birthday cake. Sensitive to cold? You're cold-blooded. Feeling tired? Who isn't?? Most articles on Hashimoto's have a line or two about how it can take years for symptoms to manifest. But even if they are manifesting, you might not be paying attention! Hardly anyone goes to the doctor for achy legs or constipation. People would think you were a hypochondriac. In some ways our societal attitudes towards illness could really stand to be reexamined.

What are the causes of Hashimoto's Disease? 

The most obvious cause is genetics. Four cases of it in my family (so far). I was diagnosed with HD at the same time as my cancer, but it was rendered moot by my total thyroidectomy. Like thyroid cancer, this is also a disease that mostly targets women. I've also read that it mostly targets middle-aged women, but I question the usefulness of this statement. I dismissed cancer as a possibility because I was (and still am) in my late twenties, which I don't think is considered middle-aged by anyone old enough to have graduated high school. I don't want others to dismiss the possibility of HD for the same reason. Given the strong correlation between Hashimoto's and Thyroid Cancer, it is likely that you can contract HD in your twenties.

Here are the three most interesting causes: pregnancy, too much iodine or other drugs, and radiation exposure. Apparently pregnancy can cause a number of thyroid illnesses due to increased thyroid hormone or hyperthyroidism. Strangely enough, this has a strong correlation with developing HD post-pregnancy.

Here's the one my mom needs to pay attention to: TOO MUCH IODINE. "Other drugs" refers to iodine supplements or drugs containing iodine. I don't know how this happened, but at some point my mom decided that a lack of iodine is the cause of her hypothyroidism. Unfortunately, she has started taking iodine supplements, which I found highly suspect even prior to researching. I have now found several articles that say NOT to take iodine, including this one, which also argues that iodine supplements are harmful for those who already have Hashimoto's.

Most people in America get PLENTY of iodine. Unless you are a complete health-food junkie who never eats anything other than what you have cooked yourself, you are safe. Here's why: most processed foods have iodine and iodized salts in them. In addition to the LONG list of foods with naturally occurring iodine (as iodide) (meats, grains, eggs, beans, dairy, anything from the sea), the U.S. has a salt iodization program (started in the 1920's), whereby iodide is added to all table salt.

According to The Office of Dietary Supplements, taking too much iodine can have the same impact as taking too little:

High intakes of iodine can cause some of the same symptoms as iodine deficiency—including goiter, elevated TSH levels, and hypothyroidism—because excess iodine in susceptible individuals inhibits thyroid hormone synthesis and thereby increases TSH stimulation, which can produce goiter [2,58]. Iodine-induced hyperthyroidism can also result from high iodine intakes, usually when iodine is administered to treat iodine deficiency. Studies have also shown that excessive iodine intakes cause thyroiditis and thyroid papillary cancer [2,58]. Cases of acute iodine poisoning are rare and are usually caused by doses of many grams. Acute poisoning symptoms include burning of the mouth, throat, and stomach; fever; abdominal pain; nausea; vomiting; diarrhea; weak pulse; and coma [2].

And finally, radiation exposure. This mostly refers to anyone who has been exposed to HUGE amounts of radiation, like that of an atomic bomb or nuclear disaster. Radiation is actually naturally occurring and all people produce radiation. Radon is the biggest source of radiation, medical x rays the second, and everything the third. The only one we can do anything about is medical x-rays (and I guess this now includes those taken at airports). I'm not saying to avoid x-rays, but be aware of when they are necessary and when your doctor or dentist is just trying to get a few extra bucks. For instance, getting x-rays every time you get your teeth cleaned is NOT medically necessary. And the thing I learned only AFTER my diagnosis is that you can request a cover for your neck during x-rays, to protect your thyroid!

What are the treatments for Hashimoto's Disease? 

Well, Mom, you don't have to be on any sort of special diet. Although you do have to stop taking those darn iodine pills. Sorry. You'll have to avoid donuts for other reasons. Basically, those with HD are put on a thyroid-replacement supplement such as Synthroid or Levothyroxine. It will take a couple of months to get your hormone level balanced.

Occasionally a thyroidectomy is recommended for those with HD. However, unless you are suffering from severe Hashimoto's and medication alone is not helping your symptoms, a thyroidectomy would be a drastic and possibly unnecessary procedure. Of course I am not a doctor. But I understand from thyroid forums and articles such as this one, that "There are a few voices out there that would recommend that all patients with Hashimoto’s Disease undergo thyroidectomy."

Make sure your doctor isn't one of them! Surgery is not fun. I hope I never have surgery again. The only reasons to undergo a thyroidectomy with Hashimoto's are if the scar tissue has built up around your wind pipe, making it difficult to breath or swallow, or if hard nodules have formed that are indistinguishable from thyroid cancer. Even then, I would get a biopsy first. 

So that's it. My nutshell description of Hashimoto's Disease, which was named after its discoverer, Hakuru Hashimoto. I leave you with this thought: If you discovered a disease, would you really want it to be named after you?

 "In 2012, (your name) Disease swept across North America, killing millions." "We pledge to wipe out (your name) Disease! Beat (your name) before it beats you!"

Hmm. And he looks so nice....

Cancer Free! (And Mom's Thyroid Biopsy)

Has anyone seen my cancer?

Because my doctor CAN'T FIND IT ANYWHERE!! 

(I credit this bit of cleverness to another survivor)

WOOHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

What can be better than that?

font family: 'Coming Soon'

I am as cancer free as I will ever be again. 

Both of my tests are negative and while the doctors are still trying to get a confirmation test, something would have to go horribly wrong for this to be contradicted. So I feel confident enough to say I am cancer free.

Obviously I am thrilled about this. It pushes a humpback whale of stress and worry off of me, my family, my friends. It means a whole year test-free, surgery-free, relatively pain-free. It means I can relax and focus on other areas of my life. It means I can return to whatever semblance of normalcy I conduct my life in. It means I won't have to see that strange look on faces when I tell people I have cancer. Something between surprise and pity and relief.

So I don't even want to discuss anything else. I don't want to leave myself or anyone else with a thought other than the beautiful silk-wrapped thought that I am cancer free.

And if that is what you want to be left with too, the little bird of hope perched on your hand, stop reading. Wait until another time to read my thoughts on being a lifelong cancer patient or my mother's biopsy.

BUT.

(sigh.)

But I am not cured. And there is a difference. Don't get me wrong; I am as grateful as a pardoned prisoner to have this diagnosis. I want to carry this diagnosis around in my pocket and pull it out proudly to show strangers or frame it above the couch and invite friends over to admire it.

But there is something a bit anti-climactic in only being cancer free for a year, as opposed to a lifetime. I am still a cancer patient and will have to undergo tests next year and am still high risk for the next 2-4 years. The cancer will still be there, if in no other form than a slight shiver in the back of my mind. And it will resurface every year for the rest of my life. Given what I have read of the experiences of others, how fortunate I am to not be in the throes of recurrence or metastases or more aggressive cancers or harsher treatments, any dissatisfaction on my part seems selfish, petty even. But it would be dishonest of me to say that this reversal of my diagnosis is a psychological cure-all. I still envy those who are truly cancer free.

But! This IS the best possible news I could hope for. And I am gifted a year of health, which, as the cliche says, you don't truly value until it is gone. So I will do my best to be fully appreciative and use this year wisely and CELEBRATE life more fully!

Doctors should be required to take communications courses. 

On a side note: I finally deciphered my cancer-free status on Wednesday, though it appears I was told about it on Monday. To the credit of the doctor and nurses I have been calling repeatedly in an effort to get my results, it only took 4 days past the original deadline to tell me my results, as opposed to the 6 days I bemoaned yesterday. Against their credit, I was told in such a convoluted manner as to once again misunderstand my diagnosis. I am an intelligent person with 7 years of higher education in English language and literature, a field dedicated to the analysis and interpretation of language. And yet, in dealing with the medical community I have encountered an excessive number of language barriers in situations where communication is critical.

I have already censured the medical community for 1) contrary use of 'negative' and 'positive' in diagnoses without additional clarification and 2) contradictory body language during diagnoses (e.g. smiling and cheerful tones during the delivery of bad news.

This most recent misunderstanding comes from such phrasing as "so far so good, but I cannot say for sure until I receive written confirmation" and "your thyroglobulin level is low, but not low enough for a confirmation." This phrasing led me to believe that the "confirmation" was equivalent to a final evaluation of my lab work. I have since been informed that it is simply a precautionary measure, equivalent to double-checking and that my thyroglobulin level (.25 NOT 2.5) IS low enough to be considered negative. The nurse seemed quite bewildered as to why I was still persistently calling for my results as I was supposed to realize that what was relayed to me, sans confirmation, is as good as it gets.


So now that we are officially done worrying about me, let's worry about my mom for a bit....

Today I went with my mother to her biopsy appointment.

Doctor Speak played a significant role in our understanding of what happened.

Whereas all of my cancer testing and treatment has taken place at the Harris hospitals (HEB and Fort Worth), my mother chose to get treated at UT Southwestern Medical Center, which has a nationally recognized endocrinology department ranked 24th in the nation. Harris FW scored a 26.5 out of 100 on the same test (U.S. News). That's like getting drunk before a trigonometry exam you didn't study for and sleeping half-way through. Only it's your doctor who is taking the test and the subject is how to heal you. That and the hassles I have dealt with... I am seriously considering switching.

The wait time was not bad at all. We arrived at 8:45 for a 9:00 appointment and they got her almost exactly at 9. She only had three lines of paperwork to fill out and two places to sign. However, we did run into another language barrier with the paperwork, which asked if she had a Mental Directive and an Advanced Directive, neither of which we had ever heard of. Considering more than 60,000 people search the terms "what is an advanced directive?" every month, we are not alone in our confusion. I guessed it was some kind of legal document like a will and I was right, but why didn't they just say, "Do you have a living will?" Who besides lawyers and doctors ever refers to these things as directives?

The rest of what happened was described to me by my mother since I had to stay in the waiting room. You might want to compare her experience with mine. I have to assume that my doctors/technicians were superior in explaining what they were doing to me throughout the biopsy than these doctors/techs were because my mom was pretty confused about what had happened to her. Here is our conversation as close as I can remember:

ME: Did the anesthetic hurt?

MOM: I didn't get any anesthetic.

ME: What? Seriously? Are you sure??

MOM: Yeah. They just poked me with needles.

ME: Was one of these needles small?

MOM: They were both about the same size. I was watching them on the screen.

ME: Okay, but did you actually see the needles with your eyes? You can't really judge the size of things just from the screen. Did they at any point say "This is going to hurt a bit" and stick you with a needle that pinched a bit?

MOM: Oh yeah, they did that. 

 (This was the anesthetic needle.)

ME: So how do you feel? How was it?

MOM: My neck is sore. It hurts a bit. But it wasn't terrible. But my neck hurts.

ME: Well how badly? Was it worse than you expected? Should I tell people you experienced more pain than me?

MOM: No. Just painful enough to want sympathy. 

:) So I guess it is still safe to say that the biopsy is not as scary as it seems on paper (that pre-web text venue). Don't let the giant needle worry you. You will feel pressure and soreness but not much more.

And I could happily end this saying I am perfectly hopeful.

BUT. (Bigger sigh.)

I am worried. For one, my mother drew a picture of her ultrasound for me. She is an incredible artist, so I know her rendering is accurate. Unfortunately, what it shows is five nodules in two clusters, all on the left side of her thyroid and all about 1.5-2 cm in diameter. The doctors described what they saw as "lumpy" and "mushy." If you recall my biopsy, my thyroid was described as being "lumpy and bumpy." I think these terms may be Doctor Speak for cancerous.

The only other thing she noted the doctors saying was that it was likely she has Hashimoto's disease. I was also diagnosed with this along with the cancer, but the cancer trumped, especially since it meant the removal of the thyroid (and thereby the removal of H disease).

The symptoms of Hashimoto's disease that my mom displays are (click here for a full list):

• A large, lobulated (lumpy) and holey (in the Swiss-cheese sense) thyroid 
• Sensitivity to cold
• Migraines
• Cramps
• Memory Loss
• Hair Loss
• Muscle pain and stiffness
• Hypothyroidism (slight)

 According to a 13 year study on the correlation between Hashimoto's and Papillary Thyroid Cancer, those with HT and " undergoing thyroidectomy are 30% more likely to have PTC." I'm not sure exactly what the role of the thyroidectomy is in this equation, but I suspect it means that if the Hashimoto's is severe enough to warrant surgery, the probability of cancer increases.

After my mom's appointment, I felt her neck and found that the left side was protruding a bit more than the right, meaning either her thyroid or lymph nodes or both could be swollen on that side.

All these things mean that my mother has the following symptoms of thyroid cancer (click here for a full list):

• Enlargement of the neck/lymph nodes
• Difficulty swallowing & a choking feeling (which we both strangely attributed to her getting older)
• Asymmetry in the thyroid (big nodules on one side, nothing on the other)
• Hypothyroidism (slight)
• A lobulated and holey thyroid

This plus our amazing family history makes me nervous.

And perhaps a better daughter would lie to her mother and tell her she thought everything was great to spare her a couple of hours of worrying. But everyone told me things were fine and that only made me MORE upset when it turned out not to be true. In fact, the constant reassurances from well-meaning strangers and questionably motivated medical staff made my diagnosis a veritable shock. Sorry Mom. We will just have to pray that much harder.

God, if you are reading my blog, please give us one more cancer-free verdict.

Close But No Banana: Half of My Cancer Results and More about Thyroglobulin

Cancer Free or Not Cancer Free?

To this question, I have half an answer. Or even slightly more than half, but nothing definite. Basically the most annoying maybe ever. I feel mostly better but a lot frustrated and a dash fearful still. It would be really nice to know for sure. My scan is negative and my doctor felt confident enough to tell me that (a week later, following begging and tears). However, my thyroglobulin level is 2.5, which is "low", but not low enough to get an all-clear yet. A 2.0 or below is usually the strong indicator of no recurrence, so the best my doctor could do was say "so far so good" and he'd get back to me when he had written confirmation.

The frustration I've been experiencing, for those of you not playing along, is largely stemming from the fact that to even get HALF of my results has been like trying to stuff a cat in a dress (notice how few kitty-outfits are sold in pet stores). I have been put off for a week-and-a-half now, mostly by callous answering machines. After having been told I would get my results Wednesday, Thursday, Friday and Monday (yesterday), I finally had it. I had already left three new messages for my doctor's nurse, so I tried calling the operator (even though the answering service makes it clear this is for doctors and hospitals only). The first operator immediately transferred me BACK to my doctor's nurse's answering machine (every bit as confusing as it sounds).

So I called again, this time on the verge of tears and the second operator took pity on me when I begged her not to put me through to a machine. She told me my nurse was right there, talking to a patient, and she would put me on with her as soon as they were done. And unlike all the other people making promises to me, she kept her word. After ten more minutes I talked to the nurse who told me my scan was clear, and everything looked good, but the doctor would need to confirm and she would have him call me before the end of the day. A few hours later he did call and told me basically the same thing, but in a little more detail. No one has been very clear on WHY my results have been so difficult to get a hold of. The doctor expressed his own confusion, saying something about how they had been sent to an outside lab and he wasn't sure why. So far the excuses have been: We don't have them yet; The lab is broken; You should have called; Oh, you did call? Well, I was out of the office; They can only send three or four tests at a time; I need to check with the doctor; and I'm waiting for confirmation. Over six days....

Anyway, I called again today, hoping to shut this thing down once and for all, but no banana. No return call either. I am beginning to wonder if I will ever get an all clear.

And even though I will only be "cancer-free" for a year, this period of relief has become more and more desirable to me with every trip to the hospital and needle injection and unanswered phone call. A whole year of pseudo-normalcy and health? I'll take it.  While a recurrence would certainly not be the end of the world, I very much dread undergoing the whole surgery-radiation-hypothyroidism process again.

REVISION: I am still rather confused about calculating chance of recurrence and what constitutes a good thyroglobulin level. Hopefully I will have a doctor explain this to me soon so I can relay the information to you.

From what I have read, I have anywhere from a 30%-80% chance of recurrence. Most articles I have read predict the lower end of the spectrum, saying that low risk thyca patients (young, white, female, no metastases) have a 10% chance of recurrence and high risk patients (older than 45, larger tumors, metastases, male, "certain other demographics"). Since my cancer had already metastasized to my lymph nodes by the time of my surgery, I am considered high risk.

Here's where I get confused. A  few articles say that higher risk candidates have an 80% chance of recurrence. The first that I read, a 2005 article on thyroglobulin tests, states:

'We were surprised to find that even with relatively low thyroglobulin levels, and even when there is no sign of a tumor, about 80 percent of patients had a recurrence of their cancer within three to five years,' says first author Richard T. Kloos, associate professor of internal medicine and of radiology.

 The strange thing about this article is how there are no qualifications to this argument. To say all patients have an 80% chance of recurrence seems unlikely, since doctors only take special measures to annually monitor those in the high risk category.

Another study, discussed in a 2011 article of Clinical Thyroidology, says that I am at an 80% risk not because of my metastases as much as my thyroglobulin level:

In the second study, 107 patients with thyroid cancer treated at The Ohio State University were studied. All patients underwent thyroidectomy followed by radioiodine treatment. All had thyroglobulin stimulation testing with rhTSH and were divided into the following groups: Group 1 - thyroglobulin ≤0.5ng/ml, Group 2 – thyroglobulin 0.6-2.0 ng/ml and Group 3 - thyroglobulin > 2.0 ng/ml. Thyroid cancer recurrence rates were as follows: Group 1 - 3%, Group 2 - 11% and Group 3 – 80%. This study demonstrated that a rhTSH stimulated thyroglobulin threshold of 2.5 ng/ml or greater indicated a high risk of thyroid cancer recurrence.

Again, I do not have the full story on my cancer testing yet, but when I spoke with my doctor he said that a 2.5 thyroglobulin level was low. Not low enough, but still low. And yet the study above suggests that this is the highest level and highest risk.

I am obviously going to have to talk to someone with a medical degree to get this sorted out.

Tomorrow I am going with my mom to her biopsy appointment. I will do my best to document her experience; it will be interesting to get a second perspective on the experience.

Now I'm off to harass my doctor with more harrowing phone messages. I leave you with some thoughts on the current quality of healthcare: