Dear friends,

Hello from the other side of neck surgery!

 I had my C1/C2 fusion surgery at NYU Langone, New York on 4/17/24. To repair the unstable fractures in these two vertebrae, that I sustained last October when I had an accidental fall in my Waimea home.

The surgery was done painlessly (under anesthetic, of course – 5 hours).

Pain followed. Quite a bit of pain. Who knew?? Ha Ha!

I guess I’d been very optimistic in my aspirations for a quick and easy recovery. I’d had to wait so long for the surgery to be done because of various good reasons to delay it that I was just so eager to be past the actual operation that I didn’t allow myself to prepare mentally for weeks of pain and discomfort. Or avoidance. Maybe that’s a good thing. Anyhow, I had somehow imagined feeling better by now, with less pain and a lower level of constant consciousness that my neck has been in some trouble. Over my 6 months in the rigid Aspen neck brace, the pain was minimal when the brace was on. It was just super annoying to have to wear it 24/7, and to feel like I was going through the world wearing a motorcycle helmet.

Ominously, the discharge notes included, in large letters, the warning:

“It gets worse before it gets better.”

Of course it does!

One’s mind can get around this idea.

However, like many before me, I imagined that the first week would be the most painful. That the pain likely worsens in the middle of that week and then starts reducing and the patient improves steadily. This scenario was not even close to reality! It’s therefore been quite a ride, but I’ve managed to stay on the horse, in the saddle. (What other choice did I have?) And, as I have frequently reminded myself over the past 5 years, “This ain’t my first rodeo.”

“Smile, then pivot.”

That’s what I did - because that’s what I have to do, even if it’s hard to smile. At the knowledge I'm likely to continue having some significant periods of pain for some time. I learned the "Smile and then pivot" ‘mantra’ from someone in the Kidney Stories Toastmasters club whose meetings I sometimes attend. It’s a club created for people around the country either waiting for a kidney transplant or recovering from one, and it includes people who work as advocates for living kidney donation. In one of their speeches, a member noted that they had learned, when faced with an unexpected change, to “smile, then pivot.” To be better able to handle the new situation. ‘Smile, then pivot’ has become another of the tools I’ve come to use to handle unexpected changes and challenges. I like the saying because the encouragement to smile under tough circumstances is amusing in itself! Smile? Yeah, right!

So I pivoted. Decided to consciously be more patient for signs of improvement, to make note of where I am today and how I feel right now vs how I was and how I felt felt a week ago. And yes, there is some forward progress.

And fun is re-entering my life again after taking a pause for a few weeks. Last night, my daughter Tanya, her husband Jamie and my sister Sally (who’s here from Indiana taking great care of me) attended a free outdoor performance of Moliere’s “The Miser”. It was held in the performance outdoor space at Prospect Park, Brooklyn, where the cherry trees (actually ‘redbuds’) are in full bloom. It was a reasonably good 5-10 minute walk to the park performance space from the place where the Lyft driver was able to drop us after our tasty restaurant dinner. So I felt glad about getting a walk in – walking is important PT for me. “The Miser” was an excellent performance, really funny and very contemporary in setting, while the dialogue still feels up to date. Many many laughs, dramatic over-the-top acting. A very good diversion from feeling neck/shoulder pain or noticing the cold of the evening outdoor air. Misers are misers, whether in the 17^th century when Moliere was writing, or now, in 2024. We have all met someone who matches that description.

What a delight to be out at a play, to laugh out loud every couple of minutes, to savor the cleverness of each of the actors as they played their roles with great exaggeration yet remained plausible in their attempts to get what they wanted. Even the cold evening, with outdoor temperatures in the mid-50’s, didn’t dampen our enthusiasm. It was very civilized – chairs and even an elevated back tier where we sat, which made it much easier to see the action. 

I’ve always been a fan of Moliere plays. So well done – so witty and ‘cheeky’. This was the first time I’d seen ‘The Miser’. I have seen performances of ‘Tartuffe’ and ‘The Imaginary Invalid.’ But not in New York – the quality of the acting was as exciting to experience as the quality of the restaurant food here. Lots of competition is good for the public in both arenas.

Yes, my neck was very stiff and rather sore by the time we got home, but I warmed up quickly and was happy to take the pain relief tablet for the day. I’m limiting myself to one small dose (or half a dose) of the oxycodone per day. I’ll phase it out soon. Tylenol works fine during the day now. Getting out for this cultural experience was definitely worth it. It gave me motivation to envision the better quality of life I’m looking forward to having in the future.

I know some of you have been a bit concerned not to have heard anything from me on Caring Bridge since the surgery. I was focused on getting through each day, eating, walking, sleeping (naps are getting fewer now.) Up until now, doing the daily NYT puzzles and crossword have been about the limit of my mental abilities.

A very big thank you to my team of caregivers here. Tanya and Jamie, Milo and Sally. All of them have gone above and beyond to make me as comfortable as possible, to feed me, and to provide company and encouragement. They take me out walking and even shopping; they pick up after me and are constantly bringing me things I need/want that are out of reach or just not what I feel like getting up for. I am so grateful to these wonderful people for the sacrifice and dedication to me that all of them have shown. Milo came from Tacoma just before the surgery, spent the long surgery hours with Tanya, stayed with me in the hospital during the days and for at least one night and did the major caretaking for my first 4 days and nights at home – the pain medication the hospital sent me home with gave me horrible nausea so the nights were very disrupted for all of us for the first nights home.

I’d been staying with Tanya and Jamie since April 2 for pre-surgery testing and to have sufficient after stopping the blood thinner prior to surgery.  So it was good to be able to give them a nice break when my sister Sally arrived from her home in Indianapolis on April 24, the day Milo returned to Tacoma WA. I relocated that evening to join Sally in an Airbnb she had arranged for us, only a 10 minute walk from Tanya and Jamie’s apartment. It’s even closer to Fort Greene park which is a lovely little park, very busy every day with families, dogs and strolling folks. Sally has been chief cook, bottle and dishwasher and picker-up-after. (I have to follow the BLT rules for 12 weeks: no Bending, Lifting or Twisting, so I leave a trail of things I’ve managed to drop on the floor. I am now a dedicated convert to owning a ‘grabber’ tool to pick things up!)

Sal is here for 2.5 weeks total and she leaves on May 10. She and her husband have sold the house that their children grew up in, in Bloomington Indiana, which they kept after moving to Indianapolis in 2017. They’ve rented it out on Airbnb a fair bit. It was actually Sally’s main place to live during the first very scary part of Covid – before vaccines – when she continued to work as an ER doc during the pandemic. Staying on her own after shifts kept the rest of the family safe from  potential exposure. Sal and her husband Lynn need to  complete the tasks of sorting, selling, moving some possessions to Indianapolis – in general clearing the house for the new owners taking possession at the end of the month.

I want to convey just how important to me my children and my sister have been in seeing me through of my difficulties over the past five years. How they have stepped up and put me first, even when it wasn’t especially convenient for them. I am truly blessed to have all of them in my life. After making my long-drawn-out recovery from transplant, I’d imagined that I wouldn’t be calling on them for such close, intensive care so soon. (As intoned ominously in Rowan Atkinson's TV series, The Black Adder,

“One never expects the Spanish Inquisition.'  

However, “Smile, then Pivot.”

Tanya, Milo and Sally have themselves kindly  taken the same mantra to heart. They’ve put their regular lives mostly on hold for some weeks on my behalf. While not at the same level, Jamie and Cam have also provided great support to the effort of helping Gail. 

And thank you to all of you who keep up with my Caring Bridge updates. All of the good wishes and funny bits and pieces, the cheery cards and emails from friends, and the well wishes on my Caring Bridge site have added to my recovery. All have helped me keep a positive attitude. I’ll likely stay on the mainland with friends or family for the next 10 weeks or so until I have gotten through the 3 month BLT restrictions – no bending, lifting or twisting – rules that would be really hard to comply with at home on my own.

But, like Arnold, “I’ll be back!”

Both physically and emotionally, as well as geographically.

With time and a little help from my friends. If you are far away, or near, please provide encouragement by sending me humorous and entertaining snippets. Humor has been one of my main survival tools. So please share anything that makes you laugh out loud, even chuckle!

Best to everyone,

Gail