It all started with a headache. A horrible, mind-numbing, persistent headache that appeared out of the blue. I was coming off of a very fun but hectic 4th of July weekend with family and friends. Around July 6th, I woke in the middle of the night with a piercing pain in my right forehead. Confused, I tried to go back to sleep, but when this proved futile, I decided to get up, took two Advil (which has always done the trick for my rare time-of-the-month headaches), drank two large glasses of water and went back to bed.
In the morning, I was still lying awake in pain. It felt as if something in my forehead above my right eye was exploding. The pain was constant and exhausting, but a headache devoid of other symptoms didn’t seem worth a trip to the ER or even a call to the doctor. So I decided to wait it out in hopes that it would go away on its own. My preferred treatment method was to complain to Rick over his birthday weekend (a strategy that didn’t prove very effective).
Because the pain was worse at night and whenever I tried to lie down, I was barely sleeping and exhausted. When I tried to exercise I felt dizzy and my heart began racing. But still, it was just a headache.
The following weekend (Week 2), I was looking forward to a weekend get-away with old friends; three days of sleeping-in, lounging, and relaxing at a mountain resort. I figured if the cause were exhaustion, stress, or even my mattress or pillow, I would finally get some relief.
Instead I increasingly felt worse. While the pain persisted in a single spot on the right side of my forehead, the right side of my face began to feel “full,” as if I had a head cold or bad sinus infection. It was becoming increasingly difficult to breath out of the right side of my nose and the pressure was becoming unbearable. By the time I returned home from my trip, my right eye felt “funny,” bulging , and blurry.
At the earliest opportunity, I raced to the Urgent Care near my office, determined to get an answer. Upon my suggestion, the doctor sent me to Ophthalmology for a full eye exam. Maybe it was eye strain? Maybe my vision was deteriorating slowly with age and I hadn’t noticed? The exam revealed nothing abnormal and my vision was still 20/20.
So I walked back over to Urgent Care, determined to get an answer and start feeling better. Instead, the doctor suggested I had a sinus infection and sent me off with a prescription for Vicodin and a round of antibiotics. Knowing that I clearly did not have a sinus infection, I asked what the next steps would be if the antibiotics didn’t work. She suggested I follow-up with my primary care physician.
So before leaving, I called and scheduled an appointment with my primary care doctor for her earliest appointment which was the following week.
The wait for my appointment on August 1st seemed eternal. By this point I honestly had started to think I was dying or at the very least was going to go berserk in the doctor’s office! I had never experienced anything like this before (and hope never to again). I was trying my best to hold it together at my full-time job and watching the kids every afternoon and weekend.
Pretending to feel “normal” was exhausting. When the appointment finally came, I tried to be optimistic, but the doctor seemed rushed and uninterested; she suggested a “persistent sinus infection” and sent me off with prescriptions for Sudafed and a stronger antibiotic. Knowing that I still did not have a sinus infection, I asked her what the next steps would be if the antibiotics didn’t work (sound familiar?). She said to contact an Ear-Nose-Throat specialist (an otolaryngologist), if I really felt it was a sinus issue. So before leaving her waiting room, I called the ENT to schedule their next available appointment.
I was feeling optimistic about ENT #1. He seemed nice and knowledgeable and I trusted him. Rather quickly he concluded that I didn’t have an ENT issue and my symptoms were likely neurological. He ordered an MRI for the following week. I scheduled an appointment to meet with him immediately after the MRI to go over the results.
Aside from a deviated septum, and a small “sphenoid/clivus osseous projection” (a possible meningioma – a brain tumor that is usually benign), the MRI didn’t show anything interesting . . . or at least it didn’t in the opinion of ENT #1. He said the next step would be to see a neurologist because he felt I was suffering from “atypical trigeminal neuralgia,” a nerve disorder. That afternoon I called to schedule a neurology appointment.
Still convinced I had a sinus issue (and a little alarmed by the abnormal mystery mass in my brain) I decided to seek a second opinion. I felt beyond desperate for more certainty. I managed to get in relatively quickly with ENT #2, who was part of an entirely different practice (and whose online bio claimed he “enjoyed challenging cases”).
Dismayed by the lack of respect and quality care I had received from the previous three doctors, I decided to take charge of this next appointment. No pleasantries were afforded. I told him to sit down and LISTEN. Just listen to my history, my symptoms, my desperation. And he did.
After an endoscopy, ENT #2 decided he wanted more tests, but didn’t think I had a sinus issue. He sent me to a second ophthalmologist for a more thorough eye exam (which came back normal) and ordered a complete head and neck CAT scan with contrast dye. He concluded by seconding the neurology appointment.
The CAT scan came back confirming the “abnormal mass” in my brain as well as revealing several nodules on and around my thyroid. ENT #2 called me with the results (I was told at this time that I had only one small nodule on my thyroid – I guess he didn’t find the others “interesting”?) and assured me that thyroid nodules are very common and typically benign (which is true) but that he still recommended a Fine Needle Aspiration (FNA) biopsy to make sure.
I was too distracted about my head exploding, my eyeball popping out of my skull, and my non-functioning nose to worry about some small nodules. Who cared if my thyroid was lumpy?
While waiting for my biopsy appointment, I decided to schedule an orthodontist appointment and finally got in to see the neurologist, who seemed to know nothing more than Wikipedia on the subject. She suggested I either had either an ENT problem, an orthodontic issue (this came up after I told her about my appointment, of course), or trigeminal neuralgia, for which there’s no cure. Interestingly, she merely repeated to me what I had previously been told (maybe that’s some kind of brilliant neurological treatment?)
So after ruling out ophthalmology and neurology, my “eye on the prize” was the orthodontist. I had noticed a pain/pressure in my lower teeth and experimentally had stopped wearing my retainer at night (and thought I had noticed some improvement in the headache). Her earliest opening was six weeks out – I had to believe she was worth waiting for.
Next up was my neck ultrasound and Fine Needle Aspiration (biopsy) which was unpleasant but not as traumatizing as a head MRI or CAT scan. ENT #2 called at the worst possible time, at the end of the day, with my results. The biopsy was positive for tumor cells of papillary thyroid carcinoma.
What I heard when he called was, “You have Cancer, but it’s not that bad.” I had no time to deal with the news at the time, so it wasn’t until the next morning that I was able to call the office back to find out what I was supposed to do about this news. He recommended ENT #3, who specializes in throat surgery.
I called and got the next available appointment, two weeks away on Sept. 7th, which was a full two months after I first awoke in misery. After a few days I called the surgeon back and asked if there was anything I should or could be doing while waiting for my appointment. He sent me to a hospital for blood work and a second hospital for another (apparently better) ultra sound.
Everything that came next was a whirlwind. I was having to work later to try to make up for all the work I’d missed for appointments. The kids were in aftercare at school and exhausted (and taking it out on me). Near mid-September I finally got to meet ENT #3, who would be performing my Total Thyroidectomy and Neck Dissection.
And he was wonderful! For those keeping count, he was the 8th new doctor I had seen in two months. He was confident, comforting without being condescending, and easy on the eyes to boot (I immediately nicknamed him “Dr. McPreppy” b/c of his well selected button-down and tie). I felt and continue to feel confident in his hands. He also (very quickly) diagnosed my sinus issue, which was separate from the cancer: a collapsed nasal valve resulting from a previous surgery (all it took was a quick, painless, non-invasive, one second “Cottle maneuver”).
The next steps were to schedule my surgery and make an appointment with an endocrinologist (booked months out) for my follow-up thyroid cancer care. He also recommended his colleague (ENT #4), who specializes in nasal surgery, to fix the collapsed nasal valve.
Feeling like I at least had diagnoses and a plan, the following week I was off to the orthodontist. As renowned as she was, she wasn’t much help. She tried to get me to focus on “more immediate concerns” [i.e. cancer] and getting the nasal collapse repaired. Used to getting the brush-off, I wasn’t impressed (especially after waiting so long and paying out-of-pocket for the appointment!).
But a few days later, I was in the office of ENT #4, who is assisting with my thyroid/neck surgery. He confirmed that I had a collapsed nasal valve, in addition to the deviated septum, enlarged turbinates and a bone spur all on the right side (collapsed nasal valves can cause “contact headaches”). He also explained that I have several other “abnormalities” which needed to be addressed and my condition would only continue to worsen without surgery. He recommended a cosmetic surgeon at Oregon’s Health and Science University, who is one of the only surgeons in the state who could perform such a complicated procedure. Trying to get used to defeat, I called the plastic surgeon from ENT #4’s waiting room.
In early October, I met with my plastic surgeon, who was curt but seemed competent; he entered the room trailed by several (7? 10?) eager doctors who were hanging on his every word. Facing a facial surgery under general anesthesia, I couldn’t help but ask what other “issues” he could take care of at the same time. In the end we agreed to a “package” of the nasal reconstruction (which entails removing cartilage from my ear and implanting it across the bridge of my nose) and a little “something something” that had been bothering me since high school (at this point I am willing to take feeling good OR looking good).
With both surgeries scheduled for November, I begged/threatened/stalked my endocrinologist’s office to get an earlier appointment and managed to get her to stay late one day and see me. On Oct. 19th I entered her exam room with a five-inch stack of research and 21 typed questions.
To my surprise, she let me lead the show, sitting quietly while I rehashed my story and went through my questions. These two tasks filled an hour and a half. She seemed surprisingly optimistic, much more so than any doctor I had previously seen (well, maybe aside from the “sinus infection” nincompoops!). [BTW on an aside, I have scheduled an appt. with a new primary care physician in Nov. If she claims I have a sinus infection I am prepared to slug her!]
Of course, I’m cautiously optimistic. I won’t know how bad things are until after the post-surgical pathology results. But I left her office feeling for the first time like I could “hope for the best” instead of “preparing for the worst.”