I started writing this for myself, but I was inspired to share my story by my friend Michelle Tomlinson after her ordeal with thyroid cancer. What I’m going through is no where near as harrowing as Michelle’s journey, or yours perhaps, but maybe it’ll convince someone with similar issues to mine, or to hers, or health issues in general to go to the doctor and get it sorted in order to feel better. At least, that’s my hope.
For a number of recent years, I’ve been going through different health issues. My voice has changed, gotten a bit weaker or more hoarse intermittently regardless of how much water I’ve had, and I discounted it as the fact that I’m getting older and I scream my head off at Fleetwood Mac and Stevie Nicks concerts (judge away, I love them like you can’t even imagine.) And it could be.
My neck is often sore or stiff and I discount it as a bad angle while sleeping or an accumulation of stress. Or both. And it could be.
I’m unable to lose weight consistently and I discount it as me not being active enough even though I was exercising consistently (which is certainly possible and also affected by an upcoming symptom), even though I don’t eat that much and it’s all healthy (I’m a partial raw foodist, mostly vegetarian (eggs, cheese, and butter are yum), and very rarely indulge in sweets - if I do, I’ve made them myself or make sure to read the ingredients and steer clear of corn syrup and artificial stuff as much as possible.) And it could be.
I’m not as focused as I used to be. Easily distracted in some cases. My brain is always firing, goinggoinggoing, but sometimes it’s just…not there. I have so many stories in my flesh dying to get out that there are days where I feel like my skin is going to split open, but as any writer knows that there are days or times where articulating those stories is tough. It's felt even more difficult lately.
The hardest one of all is feeling exhausted all the time. I would tell myself constantly that I’m just being whiny or lazy and to get over it. That’s how I’ve powered through everything that’s been affecting me physically, or even mentally: stop being a whiner and work through it. I’m very hard on myself.
Over the past three years alone, I’ve moved myself and my disabled mother from Florida to Oregon while also helping to organize and run a non-profit organization and film festival in Los Angeles, made an amazing short film with Shannon Lark, the most amazing partner and one of the best friends I could have ever hoped for, written a novella, a wonderful treatment, and three feature length screenplays (two of which were written with that same amazing partner as well as the treatment), written a few short stories, travelled and networked to advance my career as well as support the short film and get some traction on the feature version of that short film, worked like hell on a feature in Houston, busted ass on dreary and soul-draining freelance copywriting jobs, and a million other things I can’t even remember right now and yet I still feel like I’m lazy because of how my exhaustion has affected me, and how I’ve allowed it to affect me, mentally and emotionally.
All of these things are very plausible in their individual possible causes. Absolutely. I don’t discount that. I don’t want to give excuses, I want to feel better. It takes a lot for me to openly admit when I’m not feeling well, but then something happened that brought everything to a head.
Below is the start of a journey that starts with a lump in my throat…
January 3, 2015
The day I went to the doctor about the lump in my throat (that turned into lumps under their probing, discovering touch), I swear that I could smell the lotion my grandmother used to use. The rational, logical part of me recognizes that it probably came from the black man who descended the stairs to the train in front of me. I only point out his race because even in my worry, I find it humourous that his lotion reminds me of an older white woman.
This is my neck. There are many like it, but this one is mine. The Mickey Mouse shape in the middle of my neck is my enflamed thyroid with two tumours, one on each "lobe".
My grandmother’s been dead since the early eighties and I have very few memories of her, but sense memories are the most powerful of all. I swear that I smelled her lotion, never mind the source. It was happenstance that I was behind him, that we were both headed to the same train stop, but perhaps it wasn’t. Perhaps I needed to smell the lotion of my grandmother, who died of pancreatic cancer, the day I started this journey to find out about the lumps in my thyroid.
At this point, January 3, there are no answers yet. I have a biopsy scheduled for this coming Thursday (January 8 for future reference) and my very sweet and bubbly substitute doctor, who I’ll refer to as Dr. Smith, called to deliver that news yesterday. It so happens that she’s a student and perhaps more prepared for people who flip out at the mention of the word “biopsy” or “lump”. She’ll have plenty of those, I’m sure. I’m slightly more stoic about it. A biopsy doesn’t mean cancer, it means that I have lumps, in both hemispheres of my thyroid, that are abnormal. Could be cysts, could be benign tumours, could be cancer. We’ll find out at some point after the 8th.
The day I went to the doctor, they scheduled me for an ultrasound to be conducted several hours later. The waiting room in the ultrasound office was deserted, tastefully decorated, and quiet.
I’d set up my desktop computer so I could watch movies I have stored on it from anywhere (so long as my computer’s on) via my phone so I watched the 1910 silent version of Frankenstein. Moments after it ended, I was called in for my appointment and taken down several twisting hallways to the ultrasound room. It was small, dominated by the gurney that was in the middle of the room, and lit like an eye doctor’s exam room.
The technologist had me lay down on the remarkably comfortable gurney and positioned me so that my head was tilted back enough to get a good picture of my throat. I wanted so badly to take a picture of what was a strangely absurd situation, this tiny woman bent over my body pressing a wand covered in what’s more or less KY jelly into my throat, but I didn’t.
She prepped the work station as I lay there. No small talk, which was a relief for me. I just stared at the ceiling, the tiles were the dotted kind that only schools and hospitals would ever use. The technologist pumped the foot pedal to raise the bed while I was staring at the ceiling, an eerie sensation, watching the ceiling get ever closer.
She wrapped a towel around the neck of my shirt and slathered the wand with the ultrasound gel, then proceeded to maneuver the thing around, taking pictures of whatever growths there might be, marking them on the stills she took. I wanted to look, but didn’t want to screw up the test and the plastic frames on my glasses severely limit my peripheral vision. I should’ve asked her to see what I was made of, but alas, I didn’t.
The test itself was physically okay. There were a few times that she pressed a bit hard on my trachea to get an image, but I’d rather have that moment of discomfort and get a good image than not have it. Then, it was done. I wiped the KY off my neck as best as I could and got my jacket and everything on in the waiting room before leaving. I’m very lucky that the hospital is in my favourite part of town and was within easy walking distance of Trader Joe’s where I promptly went and picked up some snacks before heading home.
Since that was December 30, I ended up having to wait several days longer than I would have normally because of New Years. I got the call yesterday, January 2, that they needed more tests, which brings us, more or less, to now.
Very few people know what’s going on. I’ve told close family and friends who are so close they’re practically family. Now, it’s a matter of waiting. Hurry up and wait. Wait and hurry up. The soonest they could get me in for the biopsy is five days from today. In eleven days from today, I head to L.A. for a week. I should get the results of the biopsy before I go. Whatever comes next, aside from pills (if it’s hypothyroidism) or more tests, will have to wait until after I get back.
Am I scared? To be perfectly honest, yes though I’m mostly nervous. Today was a hard day as my period just started and I was eating peanut butter on flax seed crackers and I started asking myself if it was okay that a part of me is scared and I started to tear up - I do cry easily, I can’t help it - but my overall attitude is still that whatever happens will be handled. Worrying about it, being scared, doesn’t help anyone and doesn’t do anything positive. I suppose I’ll worry once the biopsy’s done. I’ll worry when I wait for the results. I’ll worry about how to fix whatever’s wrong. But right now, I’m going to try to not worry.
January 7, 2015
So, I had a bit of a meltdown last night (Tuesday, January 6.) I let it happen simply because I figured that it’s better to have come out last night than while I’m on the bed getting stuck with needles. And, I need to feel what I’m feeling when I feel it, as Robert Downey Jr. said in Home for the Holidays. All the things are going through my mind. All of them.
They sent me the text-based ultrasound results yesterday so I lay down and picked it apart. A lot of the numbers don’t really mean much to me, they’re measurements of the nodules in the lobes as well as a measurement of the “isthmus” of the thyroid, which is at 6mm thickness, which is what I’m feeling. The words I focused on were, of course, the ones I didn’t know…“heterogeneous”…”(mixed) echogenicity”…”isoechoic”.
Heterogeneous in terms of a thyroid means that I have an autoimmune disease of the thyroid. Mixed echogenicity means that it’s made of all kinds of different things that bounce the sound waves differently. Isoechoic means that the mass is easily found in the body as it bounces the sound back almost exactly as it was sent into the flesh, but from what I read it’s most often cited with the word “cancer”.
Cancer is a scary word. It’s also the birthsign of some of my favourite people. As unlikely as it is that I have cancer, it’s a possibility I have to consider. Can one have thyroiditis AND cancer at the same time? Who knows. We start on the path of discovery tomorrow.
My mantra is “Whatever it is, it will be dealt with and it will be okay.” Sometimes, it’s hard to hold on to that mantra, but it becomes the overarcing feeling. It will be okay. No matter what it is.
So, I go in tomorrow and according to my research, it’ll take two to four business days to get the results back. Since the procedure will be done on a Thursday, that puts the results to come in on the 12, 13, or 14. I leave for L.A. on the 14 so it’s entirely possible that I’ll get the results while in L.A. Either way and whatever the news, I’ll be surrounded by love.
January 8, 2015
The video below is a fairly graphic informational clip about the procedure I had done, a fine needle biopsy (link goes to the Wikipedia entry about it in case you'd rather read about it than see it.) There are needles in the video...you've been warned.
So the biopsy happened a few hours ago. The doctor was late getting to the exam room so I was there with the radiology tech and a doctor who would be checking to make sure they’d collected enough viable cells to perform the test. I tried my best to make small talk and ask questions because they seemed more uncomfortable than I was and I was the one in the blue and white gown about to get poked and prodded. I made a joke about feeling like Regan McNeil in The Exorcist except they wouldn’t be inserting a wire into my carotid for images of my brain. They giggled, not knowing what to make of my sense of humour. I get that a lot.
Eventually, Dr. White (another pseudonym) came in and we got down to brass tacks. I laid down on the bed and the doctor used the foot pedal to raise it up, so I had that same surreal feeling as when I went in for the original ultrasound as I watched the ceiling inch closer to my prone body. They covered me with towels and incontinence pads and the doctor used the ultrasound to confirm the sites they’d be investigating, marking them with a sharpie. The first site was over the isthmus of the thyroid and the second was over the right lobe. Reading the ultrasound results, I thought they’d be testing three different areas, but apparently the left lobe with its isoechoic, solid mass wasn’t a concern that required testing. I did ask afterwards if that was really all and she said, “Absolutely.”
The doctor injected my neck with a local anesthetic to numb it and it took effect almost immediately. Then, she grabbed the first of six needles, three per site, and proceeded to insert it into my skin and then jab it around to get the cells needed for testing. Do a google search for what a liposuction procedure looks like and you’ll get an idea of what the fine needle aspiration was like. Less violent, but still painful. And the ultrasound was pressed against the other side of the site so they could be sure to collect from the right area so it was like having my trachea squeezed over and over and over.
The first site was painful at first, but then the lidocaine took effect and it was just really uncomfortable. Then she injected lidocaine into the second site and started collecting there and it was very, very painful. She was almost done so rather than have her stop and jab me with an additional needle, I just beared it, but I started crying. Man, it hurt. It still hurts, but the Tylenol just kicked in. It hurts to swallow, it hurts to talk, my neck is swollen, and I’m sure I’ll be bruised. (Addendum: I wasn't!! Yay!)
Anyway, the second doctor said that we got enough viable cells for the tests and the doctor concluded the procedure complete, after trying to calm me down. She said my face turned red, which I explained happens normally, and she said that my forehead turned red, too, so she wanted me to lie there a little longer, to make sure I was okay. The tech cleaned me up (they used iodine on my skin…made me feel like Regan! As did the crying!) and put a bandaid on me, gave me an ice pack, and sent me on my way.
My mom was in the waiting room and she could tell instantly that I was in a lot of pain. I told her that it hurt so much that I started crying and she told me that she started crying as soon as I left her sight to get the procedure done.
It wasn’t until I got home and looked in the mirror that a suspicion was confirmed. The tech only put one bandaid on, which is fine. I thought it was some weird hospital bandaid because the wounds are close together, but not close enough for one bandaid. No, it was one standard bandaid. And the tech put the sticky parts over the injection sites. I joke that maybe the hospital is trying to save money, too (or maybe my insurance doesn’t cover two bandaids), but I have to admit that I’m afraid of how much THAT’s gonna hurt when the time comes to remove it. I’ll probably just let the bandaid stay on until my showers melt it off. It’s cold here and I have this neat scarf thing that a friend gave me so I can hide it.
Surprisingly enough, I was not very bruised!
Now it’s the hard part…waiting. They said the results should come early next week. I’m thinking it’ll be the 14, the day I leave for L.A. They said I could still leave and I fully intend to. I need to step away for a bit, work on other things, have a bit of fun. If I have something that will be time intensive, I want to have fun now. If I don’t, then it’ll be a celebration.
January 9, 2015
Sleeping last night was fun. I’m a toss-and-turner so I woke up quite often as the pain spiked through my neck. Around five or six in the morning, I thought I was going to be fully awake, but thankfully I was able to get back to sleep for another couple of hours. I went to bed at around 11:30 last night and pretty much passed out within minutes.
It’ll be such a relief to have this figured out, to not be exhausted all the time, to have my voice back, to feel good. I don’t know if I can remember a time when I felt really good, except for when I do something creative. What does it mean to feel good? To relax? I have fun, that’s not something I don’t know how to do.
Ironically, or perhaps not, I have the show House on in the background while I write this. There’s a mini-marathon on the Universal HD channel. I own all of the seasons, of course, but it’s nice to not have to worry about changing the disc if I’m in the middle of a writing jag.
This section was written in reference to January 13, 2015, but I wrote it a few days later, while I was in L.A.
Five o’clock rolled around on Tuesday and I didn’t think I was going to hear from the doctors. I figured my initial feeling was right, that I’d get a call in the middle of traveling to L.A. and it wouldn’t be good.
5:45 rolls around and my phone went off. It was the doctor’s office, Dr. Smith specifically. It’s not cancer!
There was MUCH rejoicing.
The doctor said that the tumours are benign and affirmed that I should go to the ENT to find out my next step. She said that I shouldn’t need to take the thyroid out, but that was a conversation for my ENT and I to have. I have to admit that I thought it was a huge leap to go right to talking about how surgery might not be necessary, but now I can see where she’s coming from.
It was too late at that point for me to call the office to which I was referred and I was busy over the ensuing few days in L.A. The Oregon Clinic’s ENT office called me themselves and we set up the appointment for a week after I get back, January 26.
The next step is to see what flavour hypothyroidism I have and to start to figure out how to fix it. I could lay out my predictions for what will follow, but I think it’s just safer to wait and see what happens next, what they’ll have me do, and what tests they’ll want to run. The best part is, however, that I will hopefully start feeling better very soon!
The bill: the biopsy cost a little over $2,600. With insurance, I only had to pay $86. This obviously doesn’t count the next step in the process yet, the testing, the new medications, etc., but that’s all in the future and unquantifiable for me. But think about that… How many people do you know who have had cancer and it was like the cancer metastasized out of their bodies and ate up their bank accounts? That’s a rant for a whole ‘nother time, however.
For me, the important thing to focus on is that I’m okay. I’m still tired as hell, I’m still “sick” in the indefinable way because I don’t look sick, but overall I’m okay. Now that I know I’m not just lazy or whatever, maybe I’ll be more kind to myself and actually take a day when I get back home and rest.
January 22, 2015
I returned from L.A. last night. The first day or two, my neck was still sore from the biopsy in addition to it’s “regular” soreness, but then that cleared up and I only had to fight my exhaustion and general soreness. I had a fairly big headache when my amazing partner-in-crime and I went to Disneyland and we left fairly early, but at least we got to ride the Alice in Wonderland ride (not the tea cups, but the storybook ride, which I LOVE, even if they did “update” it a bit.)
I got home around 9 and passed out while watching Mythbusters around 10. I hauled myself to my room and slept until around 7. Had my mind not decided that it was time for the wondertwins to activate, I could’ve slept longer. I had to take my laptop in to the Apple store and run a few errands so I went ahead and got my day started.
Monday is my appointment and I’m very much looking forward to it. I’m looking forward to feeling better, to not being so tired as I feel right now, which is still fairly early in the evening. I’m looking forward to not nodding off while watching a movie or reading a book or working on something on my computers. If I was able to do everything I’ve done over the past few years alone while feeling like this, though I think this has been going on for much longer, can you (or can I for that matter) imagine what I’m going to be like when I actually feel well?
More to come later as the next phase of my journey happens.