Wine Country Post #4

*Note: This is Posting #4 in a series of posts. If you haven’t read these before, start here.

First, the Wine Country…

If you look at a map of Sanoma County, just north of a little town called Healdsburg off the 101, there is a squiggly line called Dry Creek Rd. It starts out straight enough as it wends its way north west, eventually becoming Skaggs Springs Rd, at which point all hell breaks loose. It snakes its way south, then east, then south, then west, then north all in a seriously compact stretch of road, and it does this most of the way to the coast. On either side, there are vineyards with grape vines in neat little rows dripping with large green leaves and little clusters of purple and red.

We’d stopped in Healdsburg earlier to pick up something to eat on the road (my diet was destined to be very restrictive for some time eliminating fast food or even mainstream dining for the most part). I’d selected a freshly made vegetable sushi roll, some fruit and spring water. So there we were; driving our Porsche with the top down, a brilliant blue sky overhead, lightly dotted with fluffy white perfect clouds, vineyards on either side of the road stretching up hills and valleys as far as the eye could see, eating fucking sushi. I looked at Grant and said, “Are you fucking kidding me? This is like a scene from a movie. Who actually does this?” Apparently we do. Unreal.

It took us the better part of the day as we made our way to the California coast line. The road winded and dipped, passing old bridges, climbing and then dipping again. Being a race car driver, my husband was in heaven. I was enthralled by the scenery. Eventually passing through the wine country, we entered a denser region of trees that changed in character and size as we made our way north west. Towards the end of this stretch, redwood trees lined the roadside. The sun’s rays peeked through the canopy high above us, lending a very Lord of the Rings quality to the world. It was one of the most stunning drives we’ve ever done.

We climbed a small hill, passing through the last bit of forest and arrived at a stop sign at Route 1 (aka the Pacific Coast Highway). It’s called Stewarts Point, and was like being dropped in the middle of what I imagine Ireland to look like. Holy fuck. Don’t believe me? Google it and look at the images.

I’ll wait…

See? I wasn’t even kidding.

We stopped at the quaint little store conveniently called Stewarts Point Store where I bought an avocado, settled on the picnic bench and enjoyed some tasty eats. Grant was staring at me with warm yummy eyes and took the first of many photos of me.

Me and my avocado. Yum.

Me and my avocado. Yum.

Six Weeks of Wha? Post #3

*Note: This is Posting #3 in a series of posts. If you haven’t read these before, start here.

After…

Within hours of my arrival in California, I had my appointment with my doctor, and for the first time ever, I had a diagnosis. Turns out I have a rare condition called Adiposis Delorosa, aka Dercum’s Disease (named after the fellow who discovered it in the late 1800’s). I won’t get into all the technical details, but the bottom line is that my body had been producing painful fatty tumors (lipomas) for decades. There’s a lot of them, and though you can’t see them on me, you can feel them. It’s so rare, there is very little known about it, and the existing medical treatments are mostly barbaric and ineffective. But the details of my illness are not the point of this post; I’m just trying to impart a frame of reference for the rest of the story.

The good news is there were things my doctor felt he could do to help me, not only with the acute symptoms that had intensified more recently, but also long term. I was admitted and underwent specific treatment, diet, etc. all monitored daily, with weekly blood work and whatnot. I thought it would be just a couple of weeks, but I was there for six, and apart from my husband for a full month.

It was the most difficult month I’ve experienced in I don’t even know how long. The treatment was rough on me and my strength was diminished. I was alone for the most part, and missed my children and husband immensely. I watched the Food Network and attempted to write. After all, I had fuckloads of time on my hands. But my mind was a puddle of mush. Words escaped me, and forget about prose. Not a fucking chance. I mostly rested. Which was what I was supposed to do anyway.

My husband and I Skyped every day. I pretended I was doing fine. Turns out, he wasn’t. As the weeks passed, he was less able to sleep without me. My daughter told me he wasn’t handling it well and she’d resorted to leaving him reminders to eat and to try and get some rest. He even blew off the last day of a racing weekend because he just wasn’t into it. I was worried. We both needed some time together, and after what I’d gone through physically, I needed some space.

I finished my treatment rather suddenly because I was, quite frankly, not managing well. After two days of dry heaving, I was fucking done. More than a hundred tumors had either completely diminished or were the size of a grain of rice. Brilliant. But nonetheless, I was fucking done. But I wasn’t. There was still another two weeks of after-treatment recovery and stabilization.

However, I was tired, weak and wanted to explore the world beyond the confines of my room. So, we decided that we’d rent a convertible when he arrived. We’d take a slow trip down the Pacific Coast Highway taking in the sights and getting plenty of space. Being raised in LA, some of my closest friends are still there, so the plan was to take it easy for a week there, and then fly home. Two weeks of R & R, lots of aesthetic space to help with the recovery process, and some much needed him and I time. That was the plan. And it was a good fucking plan.

“So, I was thinking,” he said. “What do you think of maybe taking a slow drive down the PCH, spending a week in LA, and then driving home from there.”

I looked at his adorable face on the screen of my laptop. “Um…”

But before I could answer, “I was thinking we could make a road trip of it. Take our time heading home, stop and check out random, obscure landmarks like the World’s Largest Ball of Twine or Tombstone, or whatever. We could take our time and give you a chance to really recover mentally and physically.”

How sweet. I was startled by the suggestion, but oddly excited. I loved the idea of taking our time. My doctor had already warned me that it would be a month at least before I would be back to any kind of normal (if I was lucky), so I was no hurry anyway. Although I missed my kids and my grandkids. California in September was pretty sublime, and that would get us home just in time for fall.

“Sounds like a great idea,” I said. “But what made you come up with this?” I know my husband. He is romantic, but there was more to it. I could feel it.

He hesitated for a moment, and then explained, “Well, it turns out it’s about a grand a week to rent a convertible. We need one for two weeks, and that’s at least two grand. I can’t just throw away two grand. So, I started checking around on Ebay and I found a convertible that I can pick up out there for about six grand, and I know I can sell it for at least eight when we get back, so…” I laughed.

This is my husband. Savvy as hell when it comes to things like this. Sold!

He arrived a week later in a 1999 Porsche Boxter. Unfuckingbelievable. The car was beautiful, but I only had eyes for him. A whole month without him; I missed him so badly, my sleep had gone to hell too. We held each other for many long minutes before letting go, and even then, our fingers remained intwined. He fell asleep with his head on my chest at 7:00pm, and slept soundly throughout the whole night. It took three days for him to catch up on the sleep he’d missed. I slept better than I had in weeks.

A couple days later, we headed out on our road trip adventure. Such a good fucking plan.

Continue to the next post: Wine Country >

Before California Post #2

*Note: This is Posting #2 in a series of posts. If you haven’t read these before, start here.

Before…

It had been weeks and I could no longer walk any distance without assistance. Forget about driving. I just didn’t trust myself. The exhaustion was nearly overwhelming, and my body ached all over. But that wasn’t the worst. I remember seeing a friend I’d known for over a decade. My mind groped for a name to match this face I recognized. “Hi…you,” I said awkwardly. What the fuck was wrong with me? This would be forgettable if it were a rare occurrence, but it had become part of my every day life, and scared the hell out of me.

I kept it to myself as much as possible, downplaying my symptoms while I searched for answers. Doctors, specialists, blood work, tests. No one knew what was wrong with me, and all of my test results indicated that I was the picture of health. Except that I wasn’t. Not even kind of.

Just before I left, my husband and I were walking from the car; he supported me as we slowly made our way to the door. The look of worry was plain on his face. “It’s okay, it isn’t anything life threatening,” I said, trying to sound reassuring. For an instant I saw a look of terror in his eyes; he’d been pretending that he was okay, too. “How can you know that,” he said. “You don’t even know what’s wrong.” And I could see that he was frightened. Fuck. He was right. I didn’t know. I had no idea. What’s worse is that we’d lost friends and watched friends lose spouses over the years. Each time it happened, we held each other a little tighter; kept each other a little closer. We’d talked about what it must be like for them. He’d get that haunted look, and that was the end of the discussion. It was just too gruesome to consider. After twenty four years, you get used to having someone there. The idea of losing that person is unimaginable. Yet, there I was, clearly not at all okay.

But we’d found a doctor. He was in California, but he could help me. That’s how I ended up in NorCal (Northern California for those unfamiliar).

Continue to the next post: Six Weeks of Wha? >

There and Back Again Post #1

A little over a year ago my husband reluctantly drove me to the airport and put me on a plane to California.

It was frightening for both of us with so much yet unknown. He’d made all the arrangements in advance; there was a layover in Houston, so he’d ordered a wheelchair to get me to my connecting flight.

I remember slowly walking up the ramp past the wheelchairs and attendants in Houston. I made my way to a flight attendant and asked how far my connecting gate was. My heart dropped as she explained that it was literally on the other side of the airport. Are you fucking kidding me? I swallowed hard and gave her my name. Within moments, I was shuffled over to a transport cart for passengers with special needs and whisked off to catch my connecting flight. There were two other women, each in their seventies or eighties at my best guess. Oh geez. It was several minutes, and numerous turns before we made our gate. There wasn’t a chance in hell I would have made it on foot.

The flight to San Francisco was uneventful, and as I departed, I inquired the distance to baggage claim, hopeful. “It’s on the other end of the airport,” said an attendant without feeling. I took a deep breath and reluctantly gave her my name. Within minutes a wheelchair was there for me. I climbed in a little unsteady on my feet, and was relieved to have the sudden support. At that moment, a tiny Asian woman, well over fifty stepped up and took the handles of my chariot, hefting me forward. I was mortified.

This remarkably small, but capable woman pushed me through crowds, up ramps, around corners, and all the while I was thinking, “This is not happening to me.” But it was. And people were staring. No, I can assure you that I didn’t imagine this. They really were. There I was, perfectly normal and healthy looking. No casts on my feet or legs. No signs of physical trauma whatsoever, being pushed by an 80 pound Asian grandmother. It was comical and horrifying, and a part of me desperately longed for a companion with a camera to film it and post it on FB for all the world to see because it was just too ridiculous to imagine or convey otherwise. When we arrived at our destination, I gave her a nice tip and thanked her profusely.

This was the beginning of my unexpected journey.

Read the Next Post: Before California >