Update from Jane

Jane Miller

A little over a week ago, on November 2, Erik and I boarded a bus in Victoria at 9:30 a.m. We caught a ferry in Sidney at noon,  picked up our car in Friday Harbor at 2:30 p.m., drove aboard another ferry at 4:00 p.m., left Anacortes at 7:30 p.m. and arrived in Oregon City before 11:00 p.m.

Fourteen hours. This is why Erik doesn’t want me back on the boat yet, so far from the medical care that might be necessary to save my sight.

And we were with Dr. Lin, one of the top uveitis specialists in the world, on November 3. I wish I could say the universe opened up and took back the game of “gotcha” it’s been playing with me, but I can’t. It was a mixed bag of information and decisions. All of which are doable, bearable even. Few of which are agreeable.

There are signs of improvement in my left eye. There is also a spot of fluid that wasn’t there before, but while it’s a “setback” it’s not “BAD.”

I am now on a quick 3-week taper down off prednisone as opposed to the slow 4-month taper as the methotrexate ramps up. The wrenching stomach pain and my history of ulcerative and eosinophiliac esophagitis require that prednisone be discontinued as quickly as possible. That, plus the fluid in my eye, is cause for concern, so while we eliminate the prednisone, and maintain methotrexate to see if it’s powerful enough to keep my eye safe, we are reinstating 4/day prednisone eye drops. Much better for someone with my history, but not as strong against sympathetic ophthalmia.

The last news I received is the hardest to take. I am forbidden from being more than three hours from OHSU. My mention of international travel, as in being on the boat in Victoria, caught Dr. Lin’s attention. “Wait!! When is that scheduled???” It was priceless – and telling. “Well, it’s not on the schedule anymore,” I reassured her. So I am staying in Sisters and Erik will be travelling up to the boat to work on batteries and things that need to be fixed, refurbished, restored after our summer journeys. He’ll stay there long enough to do the vital tasks and enlist the aid and expertise of our boat mechanic and friend, Ron. Then back down he’ll come. When that happens is nebulous.

The appointment was long and draining, but the news was mostly what we expected, and we stopped by the Physician’s Pavilion cafeteria for a bit of food before heading home. I was unsettled, though, disquieted. And it took a bit of searching to understand and then explain.

I have a follow-up appointment in one month. December 6.  Exactly one year after my first appointment at Casey Eye Institute.

The last thing I need to engage in right now, though, is a day-by-day remembrance of this past year. A friend noted on Monday that I’ve come so far. But it has cost me dearly, despite my attempts not to allow it. I want to move on from the injury. I want to forget it happened. I want my face to move the way it’s supposed to, not to hurt, not constantly remind me of the terror and the pain. But there’s always something else lurking, right around the corner, ready to trip me up.

It takes me a long time to reach the point of disconnect and sadness, but here it was. Erik thinks this moment is because this is where we sat the afternoon I learned my eye was forever broken and I decided to have it removed. But he’s wrong. The reason for turning inside myself for just a minute. I’m just tired of it being one more thing.

“But you know what?” my internal voice said 36 hours later. “Life is dealing with ‘one more thing.’”

It’s dragging your ass out of bed – and then making the bed – every morning. It’s putting a smile on your face, even if the smile doesn’t quite meet your eyes; it’s taking care of yourself, body and soul; and it’s thinking of and helping others, in whatever way you can. The universe hasn’t conspired against me, and it would be hubris and self-indulgent to think otherwise.

I will deal with whatever and however many “one more things” come my way. It beats the alternative.

 

Modified Alaska

by Jane Miller

Modified Alaska: It’s sort of like a baked Alaska, but without the ice cream and flames.

Plans for Alaska have officially been changed and I have scheduled what I hope will be the last surgery for my eye on July 10.

The surgery will be done by my wonderful, confidence-inspiring, Jeff Bridges-like surgeon before he relocates to San Diego, and Dr. Ng, who wrote the book on this kind of ocular and facial surgery (seriously!). He is the “Chief of the Division of Oculofacial Plastics, Orbital and Reconstructive Surgery” at OHSU, and assisted in my first surgery there.

Erik has told me that … Being more than a little gorked at the time, I don’t remember him. 

Dr. Perry told us the operation would take only about an hour … outpatient. We’ll see, but the thought of it not lasting 5.5 hours, not followed by a three-day hospital stay, and not causing vomiting for a week — Whew!

We left Victoria June 2 for Friday Harbor for a few days. From there to Port Townsend, which Erik loves (though he spent a lot of the time on boat repair!), and from there to Anacortes, where the boat was set up after Erik purchased her.

We spent a couple of days with friends in Roche Harbor, then reentered Canada, two weeks after leaving Victoria. After a long slog over a couple of days, we made it to Campbell River, where we met new friends, Steve and Pat, cousins of one of Erik’s racing buddies. We texted them when we had cell service off Texada Island, and they invited us to Pat’s birthday party that night!

This cruising community is a lot like Erik’s (and now our) racing community.

We’ll finish restocking for Alaska tomorrow and Tuesday, and work on more of the repairs that are endemic in owning a boat.

We’ll be in Ketchikan in time for me to catch an Alaska flight down to Portland. I’ll see my boys, have the surgery, then head to Sisters to recuperate. In two to three weeks, I’ll have my follow-up exams, and schedule an appointment with my ocularist for the “final” revisions and fitting of my prosthetic eye. (This can’t take place until at least two months post-surgery.)

I am also researching therapists. (Of course, what else would I do?)

Then I’ll fly to wherever Erik is. We don’t know where that will be, but we will find each other! I’ll be missing most of the Alaska part of our sail to Alaska, but dealing with that is for another time.

Now is the time for healing and gratitude. It’s not a new revelation, more like a new appreciation, but the people in my life are pretty wonderful. Erik. My sons. My friends old and new, spread across three countries.

Laura, my person, has arranged her work so she can come up from California (with her nurse’s uniform!) to help. This will be the third operation she’s seen me through. How is that even possible??? One broken nose, one frozen shoulder, and now one face. “Thank you” is not big enough for all she has done.

My new friends in Sisters, with whom I have shared yoga, wine, and laughter (and with whom I am already making a when-we’re-old-ladies pact), have volunteered to help me.

My sorority sisters, once lost and now found, are wonderful. We pick up conversations begun more than thirty years ago. In our heart’s eyes, we still look like we did when we were in college, as if only a spring break  had passed since seeing each other.

The adventurers I’ve met in the racing and sailing communities. Families, really. The Big Bore Bad Boys who race vintage cars with huge engines and have hearts of gold. The friends I have made at the track. Cruisers and new friends from around the world who have buoyed my spirits and shared so much of themselves.

I may have had to face more physical hurdles than I would wish on anyone. There may be more to come. I may not have two pennies to rub together, as Dad used to say. But I have people I love and who love me back. And that makes all the rest bearable.

 

Rounding Corners, or, How Janie Gets Her New Eye

BY JANE MILLER

I’m rounding the corner. Maybe it’s only a small padded corner, so when I run into it I don’t hurt myself, but at least it’s a corner. On Tuesday, February 28, I have an appointment with my ocular surgeon. Dr. Perry will tell me then if my eye has healed enough for a permanent prosthetic.

Continue reading Rounding Corners, or, How Janie Gets Her New Eye