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