During the 8 months I was on my OMG-it’s-cancer blog sabbatical, a lot happened. I mean, a LOT. Not just with me, but also with Jerri and the rest of the family. I need to catch you up. But where to begin?
Hmm, let’s see. I could tell you about Jerri’s eviction and frantic search for new housing. Housing for New Hope, the organization managing Jerri’s apartment complex didn’t call it eviction, of course. They called it “helping Jerri to achieve her goals.” In all fairness, Jerri did want to move to a safer part of town but I don’t know. She was told she had to vacate the premises by October 1. She was given 8 weeks to find a new place and that’s not much time when you’re unemployed with bad credit and no deposit saved. Not to mention your income is only $700 a month and there’s a waiting list for all subsidized housing in the city. That reeks of eviction to me. Just stinks to high heaven. Plus your sister, who would normally help you is recovering from a thyroidectomy and treatment, which Hap, the apartment manager knew. It’s as if someone was purposely taking advantage of my incapacitation and inability to advocate for her.
I could tell you how Jerri found an apartment all on her own–a brand new apartment in an elderly gentleman’s home with a separate entrance in a good part of town with utilities included for $600 a month. Her new landlord interviewed several prospective tenants then called Jerri to say he really wanted her to take the apartment. I could tell you how she teared up when she told me. “He really wants me. Nobody ever really wants me!”
I could tell you about dumpster diving for a microwave that works just fine except for the LCD panel. Dumpster-diving. I can check that off my bucket list.
I could tell you about Jerri’s job search, because let’s face it, no one can live on $100 a month after paying for housing. I could tell you how “felony friendly” companies like Walmart and Sears hired her and then took back their offers when her background check included a 21 year old felony charge. A charge, BTW, that our parents filed. I could tell you how she persisted and again, all on her own, found a part-time position doing in-store promotion for a new dog food.
Those are all great stories filled with indignation, wonder, potentially useful insights, and tossed with just the right amount of snarkiness. But perhaps I’ll leave those for another day. What I find I most want to tell you about is this, a recent conversation with my sister. She was in her new apartment which is virtually unfurnished, sitting on an air mattress, which aside from one chair is the only place to sit other than the floor, and she looked around at the dumpster microwave in her tiny kitchen, her ancient TV on a bookcase (another dumpster find), and said, “You know, I’m lucky.”
I looked around too, and said, “How’s that, Jerri?”
Her eyes lighted. “You probably don’t think so because you’ve got a nice house and a good job making good money. You drive a Lexis and can pretty much afford whatever you want. But for a person like me, I’m really lucky.
“Just look at all I have!” She swept the room with her hand. “I’ve got a nice, safe apartment with heat and air conditioning. A lot of people like me don’t have that. They live in a ratty boarding house, or a group home, or they go to a shelter at night or sleep in box on the street.
She got up and took the 2 steps required to reach her tiny kitchen and threw open the refrigerator door. “I’ve got a refrigerator full of food.” (Her case worker had taken her to a food bank that week.) “Just look at how much food I’ve got! I can eat for weeks and weeks. A lot of people like me don’t have enough to eat.
She motioned to her coat closet. “I’ve got a coat and plenty of clothes and shoes.” (She buys everything at the Durham Rescue Mission store or Good Will.) “A lot of people like me don’t have clothes like I do.
She sat back down on the air mattress and looked up at me. “I’ve got you and Catherina (her case worker and friend). A lot of people like me don’t have anyone. They’re all alone. But I’m not. I’ve got you.
“When you think about all I have, I’ve got so much more than a lot of people. I’m just, you know, really lucky. For someone like me.”
You know, when I embarked on this grand adventure of helping my sister recover from bipolar, I never expected to be the one who gained anything from the experience. Life is just full of surprises.
Just when I was starting to get a vision for this blog, life took a little detour.
In May of last year, I went to see my Gynecologist for ye old annual visit. She walked into the room and before even saying hello, her eyes zoomed to my neck. “Oh, my. You have a nodule on your thyroid.” Pulling on gloves, she walked over and began feeling my neck. “Yeah, that’s a big one. You haven’t noticed it? We need to get an ultrasound of that.”
And no, I hadn’t noticed it. I try not to look in the mirror if I can help it. I’ve reached the age where nothing good comes of it.
So I did the ultrasound and the nodule was solid and about 4.6 cm in diameter. The size of a lime. That’s right. L-I-M-E. Not dime. Lime. No, really, I hadn’t noticed it. I’ve got a small fruit growing in my neck and I’ve got NO idea.
My Gyne said, “Well, we better get that biopsied. It’s probably nothing. Only 5% of nodules turn out to be cancer. But we need to be sure. If its benign, they’ll probably just keep an eye on. They won’t remove it unless it’s pressing on your esophagus and making it difficult to swallow.”
I had the biopsy, all the time knowing it was benign and worrying about how I would get them to remove it because I wanted it out. Out, out, OUT.
My Gyne called with the results of the biopsy. “It’s a Hurthle Cell Neoplasm,” she said. “You have to have surgery to remove it. There’s about a 35% chance that it’s cancerous and the only way they can tell is to remove it and do pathology.” She recommended a surgeon and scheduled an appointment.
Huh. This wasn’t exactly going as I’d expected. I googled “Hurthle Cell” and quickly wished I hadn’t. According to one publication, the probability of cancer increased with nodule size. It was 80% for any nodule over 4 cm.
The surgeon my Gyne recommended was an Ear, Nose, and Throat Surgeon. He does 100-150 thyroid surgeries a year. This seems like a decent amount except during the consultation, he repeatedly talked about removing the right lobe of my thyroid. Which was problematic for me since the nodule was on my left lobe. And again, size of a LIME, so pretty damn hard to miss!
I went home and consulted the All Powerful Internet (API). API suggested I might want an endocrine surgeon, someone who specialized in thyroid. I scheduled a second opinion with the Chief of Endocrine Surgery at Duke. She does about 15 thyroid surgeries a week. You do the math. I scheduled the surgery with her.
On July 3, the nodule was removed. One week later, the pathology report came back. It was official. I have Hurthle Cell Carcinoma, a rare form of thyroid cancer.
Now wait. Just wait. Before you tell me, “Thyroid cancer? Well, you’re lucky. That’s highly treatable. If you’ve got to have cancer, thyroid cancer’s the one to have!” Just consult API. Go ahead. Google it. Hurthle Cell Carcinoma. Yeah. That’s right. There’s some scary stuff out there. Metastases. Recurrence. Gulp.
On August 15, the rest of my thyroid was removed. After that, I followed a low iodine diet for a month. The low iodine diet requires you to pretty much make everything from scratch: bread, salad dressing, salsa, mayo–no prepared foods, whatsoever. No egg yolks, only 6 oz. of meat a day, no fish, only kosher salt. I lost 8 lbs. just because I was too lazy to even prepare food.
The diet rids your body of iodine stores in preparation for a body scan that uses radioiodine to light up any remaining thyroid cells in your body. Because thyroid cells love iodine, when you starve them for a month they soak up the radioiodine. The scan shows any metastases. I had none. Whew!
The scan was followed by radioiodine treatment (RAI) in October followed by 3 days of quarantine from my family. The RAI makes you radioactive–the Imagine Dragons song took on a whole new meaning for me–so you can damage the thyroid of other people if you touch them. The purpose of RAI is to kill all remaining thyroid cells in my body.
Since my surgery, I’ve been on a thyroid stimulating hormone (TSH) suppressant dose of Synthroid, a synthetic thyroid hormone I will have to take for the rest of my life. TSH is produced by the pituitary gland and tells your thyroid to make more hormone. If you don’t have a thyroid, this message could cause any thyroid cells left behind to replicate, which could lead to cancer recurrence. The suppressant dose tricks my pituitary gland — I’ve got tons of thyroid hormones so it doesn’t generate TSH.
So here’s what I’ve learned through this experience.
- The thyroid is involved in just about everything. Sleep. Body temperature. Hair, skin, and nail health. Mood. Energy level. Memory. Concentration. Weight. Bowel function. Metabolism.
- There is still an awful lot Science doesn’t know about the human body.
- Sleep is precious. What I wouldn’t give for just one night of uninterrupted sleep.
- Bad genes trump healthy practices. Despite your best efforts to eat healthy, exercise, practice moderation in alcohol consumption, avoid smoking and drugs, etc., you can still get cancer. You still can.
- People who say, “Please let me know if there’s anything I can do,” really mean it. They just don’t know what you need. Tell them.
- Life may be shorter than you expect. I may not have another 30-40 years on this planet. I might only have 10-15. I might have even less. Stop taking time for granted.
- There is still time to eliminate regret. When I examine the life I’ve had, most of my regrets are outside my power to change. The things that are within my power, I’m working on now.
- Do what’s important, what you love, now. Now is really the only time you can count on.
- Stress reduces your body’s ability to fight and kill defective cells. Your job can kill you. Don’t let it.
- Even dying is an adventure.