I got this shirt right after my Daddy died from lung cancer. Every single time I wear it, someone tells me they love it or asks where I got it. Every time. Cancer is a universal evil. It does not discriminate – it loves every age, gender, and race just the same. It has its own agenda, one that never seems to fit within the plans we have for ourselves. In most cases, it’s unstoppable and unpredictable, which makes it incredibly scary. Even so, there is one comforting fact that helps me keep it in perspective: my God is bigger than cancer. If He means for me to be around for a while, no cancer can stop His plans for me; if He doesn’t, no treatment can stop them either. There is peace within His promises.
I have one of the “nice” kinds of cancer. My malignant journey has been nothing compared to most, a fact that sometimes causes me a great deal of guilt, especially at funerals where cancer won and Relay for Life events. Even so, cancer sucks. In any form, at any time. If you are brilliant and sitting on your haunches while millions die from this wretched disease, then I suggest, implore, plead with you to get busy finding a cure – I made new friends at M.D. Anderson last week who desperately need your help.
My cancer story started when I was only twenty-two. I found a knot in my neck while in the shower one day. I even joked with Angel May and Super Man’s daddy and said, “Dude, I think I have cancer,” when I showed him the lump. He made me go to the doctor. The doctor made me go for an ultrasound, where they found a nodule on my thyroid.
Nodule is just a fancy term for a spot that doesn’t look right. You don’t want nodules, trust me.
The doctor then sent me to a specialist. I’m going to give you some basic 8th grade science here, not to insult your intelligence, but because at twenty-two I had to be reminded of a lot of this stuff too. So your thyroid is a butterfly-shaped organ in your neck that controls many things in your body with the hormones it produces. It is very common, especially in women, for a thyroid to not make enough hormone (hypothyroidism) or to make too much (hyperthyroidism). Your thyroid is part of your endocrine system, so the specialist who handles hypo- and hyperthyroidism is an endocrinologist.
I was sent to an endocrinologist after the nodule was found on the ultrasound in 2002. He promptly diagnosed me with hypothyroidism and put me on Synthroid which is a synthetic hormone replacement pill very commonly used for that disorder.
Now, I’m not blaming him for the spread of my disease, buuutttttt there are folks in my family who do. He didn’t follow up with the nodule until a full year later when I asked him the status of it, to which he replied, “What nodule?” Yes, really, he said that to me. I said, “You know, the nodule they sent me here for.”
“Oh.” [flips back in chart] “Yea, we probably need to biopsy that.”
Yep. We probably should have. Notice the past tense there.
So they tried to, but dang that hurts. If you’ve never had a biopsy right through the middle of your neck, I pray you never do. They stick that big ole needle right through all those muscles and then wiggle it around for a while. It hurts. A lot.
I squirmed too much the first time, so the results were “inconclusive.” That’s just fancy talk for “the sissy la la wouldn’t be still so we couldn’t get enough cells to actually run the test.”
Then they were going to do another test which involved radioactive iodine, but I found out I was pregnant with Angel May and they nixed that idea. They watched my thyroid levels very closely while I was pregnant because if they are off even slightly, it can mess up the development of the baby. Even with a cancerous momma, she came out healthy at a whopping 9lb 14oz! When I think about the last few weeks of my pregnancy now, I shake my head in wonder. I was teaching 7th grade at my first full time teaching position, had a rambunctious two-year-old, was HUGELY pregnant and swollen, lived in an apartment on the THIRD floor, and all the while had cancer in an organ that controls whether or not you feel up to doing anything. Smh. I can’t imagine I was a good teacher that year. If you are reading this and you worked with me or I “taught” you that year, please forgive me. I promise I got much better at my job. 😉
When my chunky baby was three months old, they did a second biopsy. I cooperated a little better for that one and the results were positive. They scheduled surgery immediately and within two weeks, I had my thyroid and four lymph nodes removed from my neck. All of that was positive for malignancy. That means the cancer had spread out of my thyroid into my lymphatic system surrounding it. That was no bueno. When dealing with cancer, a “nice” kind or not, you never want to hear the word spread, the fancy word for which is metastasized.
The month following that surgery was the sickest I ever got and it wasn’t very sick. They stopped giving me the Synthroid in order to prepare me for radioactive iodine ablation, or a radiation treatment. Our thyroid cells are the only cells in our bodies that take up iodine. Therefore, when dealing with thyroid cancer, doctors use radioactive iodine. When they’re looking for it, they put you on a low-iodine diet (the likes of which are evil I tell ya, pure evil), in order to “starve” the cells of iodine, making them more likely to take it up. Then, they give you the radioactive iodine and it glows so they know it’s there. Or in the case of a treatment dose, the cells take up the iodine and they die because of the radioactivity.
After my surgery, without a thyroid making hormones and without the hormone replacement pills, any thyroid cells in my body were seriously craving iodine. That helped make the radiation treatment more effective, but it also made the symptoms of hypothyroidism much, much worse. When your thyroid is under-active, symptoms include dry skin, dry hair, brittle nails, irritability, constipation, bloating, weight gain, trouble losing weight, fatigue, memory trouble, trouble thinking clearly, and always feeling cold, especially in your hands and feet.
[I’d like to say that it is a cruel joke that one disease can cause weight gain AND trouble losing weight. That, my friends, just ain’t right.]
During that month for me, all of those symptoms were magnified times a million. I even had some pain in my back from the muscles doing something weird. I think that was also the only time I ever really looked sick. I was very, very pale. Not my normal lovely alabaster paleness [insert eye roll and giggle here]; it was more of a sickly “what the heck is wrong with the girl?!” pale.
The radiation treatment was an interesting experience. I actually ate it. Weird. They poured two pills out of a specially made metal container with skulls and crossbones on it and told me to eat it. There’s just something unnatural feeling about voluntarily eating something that others won’t even touch. I had to stay in a hospital room in total isolation for three days. The only people who could come in were specially trained folks with special badges that measured the amount of exposure they had every month and they only came in to bring my meals. Paper, clothing, and every other thing you can imagine in a hospital room could potentially take up the radiation too through my skin (weird) so they covered the entire room in Saran wrap. No kidding. The smell of all that cellophane was overwhelming. To this day, just a tiny whiff of the stuff makes me think of that room. They warned me that I would have to leave whatever I brought with me. I brought a framed picture of my children and the latest John Grisham novel; I left them both there. I probably shouldn’t confess this, buuutttt I wasn’t quite finished reading the novel, so when I was discharged, I went straight to the local bookstore and finished the last two chapters in a chair there. A friend from college wandered in and excitedly started to hug me and I had to back away and warn him that I was radioactive. He said, “Oh hush!” and hugged me anyway. I remember feeling so happy to have that tiny second of human interaction after being so alone for three days. I’m an extrovert – we don’t often go that long a period by ourselves. I needed that hug! Thanks, Chance! The chair and the book were probably both radiated when I left. I still feel kind of bad about that.
After that, I had to wait two weeks before I could be around children or elderly because the radiation was still strong enough in my system to hurt them if they were exposed. I had a four-month-old and a three-year-old at home. After nine years of treatment since then, I still maintain that not seeing them for two weeks was the hardest part of having cancer. No mother should be without her babies that long. It was hard.
The next steps were body scans (like a pet scan, but with radioactive iodine) and ultrasounds to watch for a re-occurrence. The very first scan I had after my radiation treatment did show more malignancy, but the radiation continued to work for six months afterwards, so my second scan post-radiation treatment, in February 2005, was clean. Every year since then, I had either an ultrasound of the neck or a body scan or both. They’ve all been clean.
Until February of this year. My routine ultrasound showed a swollen lymph node (about 1.5 cm at its biggest point) with signs of malignancy. Let me explain the “signs of malignancy” part: It is normal for our lymph nodes to swell. They filter bad stuff out of our bodies and while they’re doing that, they swell and contract. For example, that’s why sometimes when we have sinus infections, our necks are sore and swollen. Lymph nodes in action. But when a lymph node is swollen with cancer is looks different, just slightly, but enough that a trained eye can spot it immediately. A benignly swollen lymph node is circular or oval with smooth edges. A malignantly swollen lymph node looks more like a splat on the screen, with the edges of the circle or oval just sort of going out at random. I have four swollen lymph nodes in my neck right now that don’t look malignant. They have noted them and their sizes and they will watch them, but there is no reason to believe they’re cancerous yet because of their smooth edges. The one they found in February, though, didn’t have smooth edges.
Before I could even get home from the ultrasound appointment, they had called and told me to start the two week low iodine diet. Ugh. Hate. That. Diet. I really dislike dieting period, but that one is hard core. If it doesn’t grow out of the ground, I couldn’t eat it. Sure, sure, eat a salad you say, but what about the dressing?! Agghhh! There are recipe books online for low-iodine cooking, but I’m culinarily challenged (did I just make up a word??? lol), so that didn’t help me. I was just hungry for two weeks. I lost nine pounds, which was fun, but I gained it all back immediately after the test.
Strangely, the body scan was clear, suggesting it wasn’t thyroid cancer. And no signs of cancer were showing up in my blood work either. So she started thinking maybe the spot they saw was just a fluke on the ultrasound and she sent me for a CT scan. The CT scan clearly showed the same spot. She said, “Well, I know it’s there; I just don’t know what it is,” and she sent me to a thyroid surgeon in New Orleans so he could figure it out. He did a biopsy, which came back positive.
If it was cancer, then why didn’t it glow on the screen you ask? We asked too. Apparently, sometimes after a radiation treatment, thyroid cells mutate. They get smart. They say, “Hey, you know that iodine stuff? It’s killing us – we probably shouldn’t eat it anymore.” Then, they stop taking up iodine. Therefore, the ONLY treatment known to KILL thyroid cancer is rendered ineffective. Bummer.
The only way to get it out then is to cut it out. I had another surgery on May 2. Since I already didn’t have a thyroid, this surgery wasn’t considered a thyroidectomy like the last one.
This one was considered a “neck dissection.” I can now report that those are about as fun as they sound.
Recovery from this surgery was much harder and much more painful.
[Shout out to the ladies from my church who graciously fed me and the Minis for two weeks after my surgery. You girls rock!]
The pathology report explains why. They had to cut all of the muscles from right under my chin all the way down to my chest in half, then move them out of the way, and dig underneath them to get the tumor out. It was very, very deep in my neck. Unfortunately, it had already spread out of the one lymph node they knew it was in and into the fatty tissue and scar tissue around it. The pathology report literally says it was “matted” on my trachea and he had to “scrape” it off.
Also unfortunately, he nicked one of my vocal cords while he was digging and scraping. They did a scope during my post-op visit and it seems my left vocal cord is paralyzed. My right vocal cord is compensating nicely, but tires out after a while. The result: I kind of sound like Minnie Mouse now. And sometimes I even sound like Minnie’s been smoking a pack a day because my voice is so raspy and scratchy. It is much, much better than it was right after the surgery. Sometimes first thing in the morning when I haven’t talked in a while, I almost sound normal. Rest assured, this is not because I didn’t have a good surgeon. He’s excellent, in fact. The surgery was just a very, very complicated one and while maintaining my vocal cords would have been nice, it wasn’t his primary goal.With the cancer spreading and matting on things, getting it all out was very tricky. However, all of the tests indicate that he got every bit of visible malignancy out of my neck. Yay!
Normally, the next step would be a radiation treatment, but since evidence suggests that these cells have mutated and are now immune to the iodine, my doctor was leery about doing that. And since the cancer didn’t show up in my blood work either, it is tad more dangerous. It’s smart (mutating) and sneaky (hiding). After the year we’ve had, smart and sneaky cancer didn’t surprise me much. The fact that my doctor wanted me to go to MD Anderson for further testing and treatment did though. Like I said, my cancer story hasn’t been too bad, so in my head I wasn’t really a cancer patient; therefore, why would I need MD Anderson?
For the record, I now think it was a humble and sound decision on the part of my doctor to send me there. You don’t often find doctors willing to admit they don’t know what’s best. I appreciate and admire her for that. I think the story of my trip there deserves its own post (for one, because this one is already monstrously long and for two, because I’m confident that there’s no place on earth quite like MD Anderson), so I will write that for y’all as soon as I can. Until then, if you know someone who has cancer, go give them a hug (if they’re not radioactive); they could probably really use one right now.