back again, a cruise, and dizzy

Last year turning into this one has been interesting for me, to say the least. It was sometimes amazingly wonderful, to say the best, and sometimes pretty lousy, to say the worst. I had a re-occurrence of back issues, followed by an amazing Disney cruise, followed by a bizarre (but familiar to me) case of dizzyness I’m still shaking off the dregs of now. So that was ouch, yay, and ugh, for anyone keeping score.

I had back surgery in 2012. It was, well, mostly successful, but not completely so. An oft-repeated mantra I’ve had to accept is that “the purpose of back surgery is not to fix your back, but to make it better than it was”. You rarely fix backs. Sometimes you make them better. Sometimes you don’t even do that. I’ve had a couple of bad back pain incidents since the surgery, and each one scared the bejeezus out of me. This one made it impossible to sit comfortably — that’s not hard on anyone’s life, right? (Anyone else ever have sciatica? Cringe with me now.) Luckily, I found a great new doctor, a physiatrist who helped me get past the pain and back on my feet, with some drugs, some physical therapy, and some patience. I also got a brand-new MRI that at the very least assured me there’s nothing terribly wrong with my back, just the usual bulges and whatnot everyone has — in other words, this time when a doctor looked at my MRI he didn’t say, “Oh dear god this is terrible”, so that was a step in the right direction.

Back pain Public Service Announcement: we were somewhat startled to realize that each time my back has been bad, since the surgery, it’s been the end of November/beginning of December. Like clockwork. My doctor says this is actually quite common — fall, and the change of seasons, is his busiest time. Moral of this story: go south.

As luck would have it, we had plans to go south, to the Caribbean, to be specific, for a wonderful cruise on the Disney Fantasy — back after having a terrific time on our honeymoon. I can’t say enough good things about the Fantasy. The rooms are spacious, the service is impeccable, the fun is everywhere to be had. A short glimpse of our trip:

The warm weather got my back feeling a thousand percent better on just the first day alone. (The jacuzzi helped too.) We had a terrific time.

But… the moment the cruise was over and we got back on land, something I dreaded happened. After the last cruise I found myself stuck with my sea legs. As the days and weeks went by, I still felt like I was on the ship, swaying back and forth, sometimes almost violently. It wasn’t a pleasant rocking. It wasn’t something that went away after a few days. Several different medicines and several different specialist visits later, we learned I had something called Mal de Débarquement syndrome. It’s super rare. It stinks. There’s no treatment. You just have to wait for it to hopefully subside. Luckily, that time, it did, after a miserable month. (Some people have it a lot longer. Like, even for years.)

Why did I cruise again, if this had happened to me before? Eh, I don’t know. I thought I hadn’t taken the right seasickness meds, I thought it was a fluke, I thought it wouldn’t happen again. But I did everything I could, this time, and it didn’t matter. They don’t know what causes this, but it tends to happen to women in their 40s who get migraines (raises hand) more than anyone else, so apparently I’m the poster child for MdDS. And this time it was worse. We came back from the cruise on January 9. This time it took closer to two months for my symptoms to fade, and they were stronger. Two really miserable months, and I didn’t want to talk about it, or the cruise, or anything much else for most of that time.

Today, though, I’m pretty close to being completely better. I feel like I’m just getting off the ship, in more ways than one. My back is in better shape, the world isn’t tilting precariously, and the snow is melting. So, it’s good to be back, finally. Land ho!

probably not cancer

daymammoSo while I haven’t mentioned it much of anywhere, or to too many people, I’ve spent the past six months in various states of anxiety over my last mammogram. To give away the end of the story, everything is fine. The problem is, everything was always fine, and those six months of panic could have been avoided by a better system.

I’ve had mammograms before, so this wasn’t my first trip to the rodeo — but it was my first time having one here on Long Island. Back home in Buffalo, I used a particular lab group that had a different way of doing things. We’ll get back to that later. Here, I made my appointment, showed up, put various bits of me in a machine to be squeezed (while it’s not something I’d do for kicks, I don’t find it all that painful), and that’s when the technician said, “Oh, looks like you’ve got a cyst.”

“A cyst?!” I asked, instantly freaked out.

“Or a nodule or lump or some kind,” the tech replied, as if we were talking about a weather system moving in later that day, or a sale at Target. She didn’t elaborate, and I was ushered into the ultrasound room. A different technician directed me to lie on the table. She was taciturn and didn’t respond to my questions. I asked what this all meant, and she told me to hold still and not talk. At this point I started crying, silently as ordered. When she finished she left the room, came back, and said I should get dressed and go home. I asked, again, what was going on. She said my doctor would contact me. I asked to see the radiologist. She said he wasn’t available.

I went out to my car and cried out loud this time. I called my husband at work — something I *NEVER* do in tax season — and talked until I was calm enough to drive home. This was a Friday afternoon, of course. There was no reaching my gyno all weekend. By the time I finally spoke to her on Monday, it wasn’t really much help. She said she hadn’t had a chance to look at my report but had it in front of her now. She rattled off a lot of medical terms that made no sense to me and did say she wasn’t worried so far. I should go back for my recheck in six months and then if there was anything I’d be referred to an oncologist (which is one of the top ten most frightening words in the English language, imho).

And that was it. That’s all the information I got. For six months all I had to hang my ramped-up worried, concerns, fears and panic on was that and a form letter from the lab that said, “We found something abnormal on your last mammogram that we believe is probably not cancer.” There’s something not very reassuring about that phrase. I mean, of course it’s better than hearing “it probably IS cancer”, but it’s not exactly the kind of thing to make you sleep well at night either.  “You’re probably not going to have a fatal accident on the way home tonight.” “You probably won’t fail your final exam.” “The guy who just moved in next door probably isn’t a serial killer.” It’s technically positive, but it whiffs a bit too much of the possibility of the negative.

For six months I worried, I fretted, I told myself it would be okay, I told myself it wouldn’t. I clenched my jaw so hard I gave myself shooting headaches. Dave was there when I was up and when I was down, of course, always, reassuring me everything would be okay. And of course it probably would be, but I still worried. I couldn’t help it. And that worry and anxiety colored everything I did and everything we planned.

Last Tuesday, I went back for my recheck. I started off the day doing relatively alright, but as the morning wore on, I got scared. I spent a half-hour in the waiting room with a locked jaw, focusing on the boring repetitive news reports on the TV, afraid I would throw up if I lost focus for even a second. Finally, they called me in. I apologized to the technician — a different one than last time — in advance, and said I was so anxious I was shaking a little, and would try my best to hold still. She asked why I was so concerned. I told her about the cyst or nodule they’d seen on my last scan, and how worried I was. She frowned. “You didn’t have a cyst, or anything,” she said.

I’m going to make what’s already a long story short and skip past the next 45 minutes, where we did the recheck and I put my foot down and insisted on seeing the radiologist this time. He was actually very nice and did, in fact, bring me in to look at all of my scans, went over everything with me, and answered all my questions. I’m fine. I was always fine. I don’t have a cyst or a nodule or a lump or anything. There was a spot on my mammogram six months ago, so they checked it with an ultrasound. The ultrasound showed there was nothing there. This happens because of something called overlapping tissue. In blunt layman’s terms, when they squish your breast in the machine, sometimes you’ve got a flap of skin or some tissue or something that makes a spot on the mammo. They do the ultrasound to see if there’s anything there. When there’s nothing, they send you home. You have to (and by have to, I mean by law they are required to tell you you should) come back in 6 months  for a recheck, just to make sure they see the same thing.

The nice radiologist told me that yes, he saw the exact same nothing this time. I made sure I understood him correctly and asked the same question every way I could think of. He didn’t waver. But I also asked a lot of apparently unanswerable questions about why this happened this way. Why did the first technician use a word like “cyst” or “lump” to me at all? Why didn’t the ultrasound technician tell me that the radiologist said they’d found nothing? Why didn’t the radiologist himself just explain this all to me six months ago? And this is where I’m giving Buffalo one, Long Island zero, because at the lab I went to in Buffalo, you ALWAYS spoke to the radiologist before you left — unless you didn’t want to. So the person reading and analyzing the scan was the one who went over it with you. The best we could make out what happened here six months ago was that someone wrote a report somewhat badly and then sent it to my gynecologist, who clearly didn’t understand what she was reading and therefore conveyed the information to me very badly, if not incorrectly. I was scared and terrified and confused unnecessarily. The system let me down. Mind you, I’m VERY grateful for my results. I’m lucky, and aware of that. But I’m still downright pissed about the negative effect this bad process had on my life for half a year.

To maybe turn that negative into a positive, thuogh, I’d like to share two articles I found that every woman should read — the first is a PDF about “The Dreaded Callback“, and the second is titled “Abnormal Mammograms Often Terrify Women Unnecessarily“. Neither of these articles minimizes the importance of regular breast cancer screening — it’s incredibly important. But there’s often no reason for it to be as frightening a process as it is. I wish I’d read them before all this happened, but at least from now on, I’ll be informed, and possibly someone else reading this will be too.

this is huge: Unprecedented Breakthrough for Spinal Cord Injuries

hp_feature_bimovementLast weekend, Dave and I went to the New York ComicCon. That was an adventure in itself. 🙂 But the most amazing thing we saw was a panel from the  Christopher & Dana Reeve Foundation.

Christopher Reeve was a talented actor, director, husband and father. He died ten years ago this week, almost ten years after suffering from a near-fatal riding accident that left him a quadriplegic. While he never walked again, he recovered far more quality of life than even the most optimistic of his doctors could have imagined. He fought tirelessly for progressive treatment of spinal cord injuries. He had faith that a solution would one day be found.

Now, the Christopher & Dana Reeve Foundation has news to share that is beyond exciting. Epidural stimulation has resulted in an “Unprecedented Breakthrough” for the paralysis community. Four young men who have been paralyzed for years achieved groundbreaking progress – moving their legs – as a result of epidural electrical stimulation of the spinal cord. New research published in the medical journal Brain documents the effectiveness of epidural stimulation as a therapy option for chronic motor complete spinal cord injuries. The study was funded in part by the Christopher & Dana Reeve Foundation.

At the panel, we heard from Matthew Reeve, Christopher’s son and now on the Board of Directors of the Christopher & Dana Reeve Foundation. We then watched a video about their campaign, The Big Idea. There were heard from four exceptional young men who have achieved progress thought impossible. You can view the video in its entirety at www.reevebigidea.org. Below is a portion featuring Rob Summers, who was the first person to receive epidural stimulation.

Finally, we were honored to meet and hear from those four men. They were inspirational. We were incredibly moved by the entire experience.

Here are some words from Matthew Reeve. I hope you will read, visit the site, and share this amazing, wonderful news.

 


 

Honor My Father In 3 Simple Ways

Earlier this year, we brought you the exciting news that as a result of epidural stimulation of the lower spinal cord, four young men, all classified with a chronic motor spinal cord injury, were able to move their legs and stand. This was an unprecedented, unparalleled, and unexpected achievement.

Even more surprisingly, these men also experienced significant improvements in autonomic functions, including bladder and bowel function, sexual control, and temperature regulation. This is a major breakthrough for millions of people living with paralysis and signals the start of a new era in research.

The Christopher & Dana Reeve Foundation just launched a new campaign titled The Big Idea, which will support the next phase of epidural stimulation research.

The goal of this initiative — the largest in our history — is to raise $15 million to accelerate this critical study.

This money will fund 36 new participants to further evaluate the efficacy of epidural stimulation in restoring autonomic functions and movement. From there, our goal is to expand the program to hundreds, then thousands, then hundreds of thousands of people living with SCI to dramatically change their lives.

This is a HUGE undertaking. And we need your help.

Here are three ways you can show your support and be a part of this revolutionary new step toward reversing some of the most life-threatening effects of paralysis:

1. Visit ReeveBigIdea.org and make a financial contribution. Just $36 to change 36 lives will make all the difference but any amount can go a long way.

2. Email your friends, family, colleagues, neighbors, and anyone you can, to encourage them to show their support as well.

3. Rally for the Reeve Foundation by posting to Facebook or Twitter using #JoinReeve and linking to ReeveBigIdea.org — and let everyone know that you are investing in the future of SCI research.

On the 10th anniversary of my father’s passing, we have a chance to change the future of what it means to live with paralysis.

My father once said, “Nothing of any consequence happens unless people get behind an idea. It begins with an individual and they share the idea with more individuals…and eventually it becomes a movement.This is our movement. This is our moment. Let’s make it happen.

Thank you,
Matthew Reeve
Board of Directors
Christopher & Dana Reeve Foundation