July is my favourite month because it overflows with early-summer pleasures: days are long and languid; local strawberries and peaches burst with flavour; lake water is swimmable. August, on the other hand, displays twinges of coloured leaves and Back-to-School shopping, prompting subconscious “Here comes the cold weather again” thoughts.
July 1st, 2024 I slipped into a shimmering glass-surfaced lake for my first pre-breakfast swim of the summer. Being at our friends’ northern cottage, I was in heaven. Days later husband Eric and I were ensconced at the Killarney Mountain Inn on Georgian Bay – canoeing, sailing, hiking, and swimming lay ahead.
July 8th When tucking into a salad of greens and grated carrot, excruciating pain pierced my right jaw. Had to stop eating. What’s going on? I wondered.
Washing my face the next morning, left temple felt tender. Magnifying mirror showed no bruise. When gentle pressure applied, parts of forehead and scalp hurt.
“Eric, do you recall me bumping into the bathroom door jamb or anything last night?” He replied, “Nope.”
As holiday pursuits continued, my glasses-enhanced eyesight wasn’t as crystal clear as usual. Sometimes it took several blinks to reconcile images produced by my two eyes.
July 18th Back in Toronto, heading to morning tennis, the vision of my left eye was rather cloudy. As Eric drove, I covered each eye momentarily, assessing vision. Left eye had a dark grey blob covering the lower right quadrant! Kept quiet until tennis over.
“I think I should see my eye doctor TODAY,” I declared. Booked an appointment with Dr. H. for that afternoon. Medical journey jumped to warp speed.
After a checkup, Dr. H. said, “I am concerned that you may have Giant Cell Arteritis, or GCA. It’s inflammation of the arteries in your temples, which can cause the jaw pain, temple pain, and double vision you’ve recently been experiencing. The trouble is, if left untreated, it can cause sudden, irreversible vision loss. If enough oxygenated blood doesn’t reach your optic nerve, you can have a stroke in the eye.”
I burst into tears. “I’ve been taking Prednisone for 17 months due to Polymyalgia Rheumatica,” I sobbed. “Monthly blood tests have shown ongoing mysterious inflammation somewhere in my body. My last test was two days ago.”
“The fact that you’ve been already controlling inflammation is great,” she said. “Your rheumatologist will decide what to do with these new symptoms.”
She faxed a report to Dr. F., gave me a copy, and suggested I phone to give her a heads up. Dr. H. said, “You were so smart to come see me immediately!” For once, my natural impatience served me well.
Over Zoom Dr. F. said, “I want you to see three specialists as soon as possible. We’ll set up an ultrasound, an ophthalmologist, and a plastic surgeon. The latter will do a biopsy of your temple.”
Wow, I guess this is serious, I thought. “If I do have GCA, how will it be treated? “I asked.
“Tomorrow raise your Prednisone dose from 5 mg to 60. Then we’ll apply for you to get the biologic Actemra, which you will inject yourself once a week. We’ll wean you off the steroid. See your GP to be sure your vaccines are up to date, have a TB test, and a chest x-ray. And wear a mask when you ride the TTC or are in a crowd. Don’t let anyone other than your husband hug or kiss you. If anyone insists on shaking hands, use hand sanitizer.”
Loved her thorough approach. Online I read that Actemra affects the way the immune system works so I must avoid getting sick or any infections. Side effects of huge doses of Prednisone are weight gain, jittery feelings, and insomnia. Annoying, but preferable to going blind! Long term Prednisone can lead to osteoporosis or diabetes, so the goal is to stop it completely.
July 23rd Another rheumatologist interpreted the ultrasound of my temples, by declaring, “Yes, you have GCA. 100% positive.”
With a definitive diagnosis, I expected to skip the biopsy. Not. So. Fast. Turns out that Actemra is expensive, and I’ll likely need it for a year. Dr. F. needs to build a case to convince the government to pay for it. A nurse will teach me how to inject it.
I tell my sons and close friends what has been going on. (The only people who’ve heard of GCA work in health care.) I explain that it’s not life-threatening, and the Prednisone I’ve been taking for months will likely prevent my sight deteriorating. If my vision ever suddenly changes, I must hightail it to a hospital’s ER.
Due to sore jaw, I alter my diet to avoid chewing anything crunchy or substantial like meat. One morning I pureed my cereal, milk, and strawberries. No culinary triumph.
July 30th After extensive testing, ophthalmologist Dr. P. declares, “There has not been any deterioration in your vision.” Big relief. Off to the plastic surgery clinic at Humber River Hospital.
Plastic surgeon Dr. R. injected anesthetic near my left ear and described the procedure. “I’ll make a 4 cm cut just in front of your ear and into your hair and close it with stitches. You need to wait 2 days before washing your hair and 4 weeks before colouring your hair.”
I asked, “What about my sports: tennis, golf, swimming?”
“Avoid all those things for 2 weeks. Don’t do anything that gets your heart rate up. The incision could burst.”
“How lucky I am to have had all these interventions happen so quickly,” I said. “I saw my eye doctor with the symptoms only 12 days ago and the health system has all been very well coordinated. People complain about socialized medicine but I’ve been so well cared for!”
“Actually, the reason you’ve been so well treated is the seriousness of GCA. It’s on a list of emergency situations.” Oh.
While recovering from having a 4 cm trench dug in my cheek and scalp, I vowed to never hire a plastic surgeon to perform cosmetic surgery – no facelifts or tummy tucks for me, thank you.
August 2nd I asked Dr. F., “Is this inflammation in my temples what’s shown up in blood tests since March 2023?”
“No. If the inflammation had been in your temples for all these months, you’d be blind by now!” was her sobering reply. “The results of your biopsy were inconclusive, i.e. neither positive nor negative. Taking some cells is like dipping a ladle into a pot of soup. You may miss the piece of chicken in the bottom. He didn’t capture any giant cells, but it’s still good that he did it. We want to get you on Actemra.”
July 2024 was not the summery, carefree month I’d anticipated.
Note to readers: Pay attention to sudden, bizarre symptoms. Timing matters.