I'm still waiting for my surgeon to call me back to discuss the MRI I had on Tuesday. In the meantime, through indirect channels, I acquired a copy of the report from the radiologists. Not surprisingly, it is written in doctor-ese and there is much there I don't understand but the "impression" noted at the end seems clear enough: there is a cystic mass at the site where I had a cystic mass removed in January and it is "probably minimally smaller" than what showed up on the MRIs I had in December. December -- as in BEFORE I had surgery to remove said mass. I'm particularly confused, because what is there now is about the same size as what was there 6 weeks ago (or 5 weeks post surgery).
Did the surgeon miss most of it? Did it grow back quickly to almost its previous size and stop? Is there something else entirely going on? I don't know. And while I am interested to hear what my surgeon has to say, I'm looking elsewhere for ideas and treatments.
It is time, I've decided to seek a second opinion from neurosurgeons outside the U of M system. I'm also going to get a referral to the pain clinic. The latter feels like a bit of defeat, since much of their treatment seems to be about finding ways for individuals to live with chronic pain apand I haven't not yet resigned myself to living with chronic pain. But, at least according to their definition, I'm already there:
What is Chronic Pain? Chronic pain is often defined as pain that persists for more than 3 months or that outlasts the usual healing process. Persistent pain can also result from chronic diseases such as arthritis, cancer, musculoskeletal or neurological disorders. Chronic pain affects all aspects of a person's life including daily activities, family life, work, leisure time, sleep patterns, and mood.
The doctor asked me five and a half weeks ago if I could live with the pain. I couldn't really wrap my brain around the question then. Part of that was denial. The pain was not supposed to be there. He was supposed to tell me that it was just inflammation from the surgery. He was absolutely not supposed to tell me the cyst I'd had removed from my spine five weeks earlier was growing back.
So when he asked the question, "Can you live with this pain?" I couldn't stop flashing on how bad the pain had been before surgery to assess where the pain was in that particular moment. And I couldn't think about saying "no" -- because what would no mean? Would no mean that I would kill myself over the pain?
Weeks later, the pain has gotten worse. The last week has seen the return of the searing sensation in my lower leg. It has been waking me up. And the pattern is the same. I awaken and there is a peaceful moment -- when I'm aware of being awake, but I'm enjoying the pleasure of my bed, but as soon as I move, the pain builds and I have to get up -- usually whimpering while I do it. It's not that I can't live with a couple of shortened nights of sleep (I have two kids -- I've done it), but now I'm playing the doctor's question through the lens of my daily life.... Can I live with never sleeping more than 4 hours at a stretch? That is where I was for more than a month before my surgery. Can I live with not being able to sit through an entire meeting? Can I live with cutting my students short and shooing them out the door so I can stop trying to hide my hurt?
When the pain first appeared, I tried so hard to ignore it. The first time, during a meeting, that I had to stand to relieve the leg pain, I felt such defeat. I could see the downward slope ahead of me.
I'm no longer standing at the top of that slope. And it is worse because I know where this is going. I was here so recently. And I know that I can't parent, I can't grade or write, I can't concentrate when I have to hold my body so carefully and so intentionally all the time.
Right now, I am achingly tired, but I can't go to bed. It is too early. I'll be up at three, even with narcotics (but the narcotics will help me get to 3am quite nicely). In moments like these, I can almost see myself saying "no" to the doctor. No, I can't live with this. But that leaves me in a place that might be scarier than the pain.
To continue my recent trend of blogging about weighty things and frivolous things back-to-back, I give you this:
I'm over cupcakes. Oh, sure, they are cute and all, but after Saturday, I'm done. This revelation didn't stop me from downing a leftover cupcake from the festivities this morning for breakfast, but I couldn't really let it go to waste, now could I?
So here is the deal: a party for 100 people, a weighty cake (10 x 10 and four layers deep), and 70 cupcakes. I sliced the cake -- it was a bit messy (because it was a real carrot cake full of carrots, crystallized ginger, pineapple, raisins, and walnuts!!!) and therefore a bit more labor intensive than normal -- but let's face it, cutting a big cake always takes some effort and skill (in grad school I worked for caterers and cut many, many cakes). But it is worth it. Saturday's party-goers filed right past the pretty cupcakes (in four flavors) to wait in line and get a slice of cake from me. Only when the cake was all gone (and I stretched its servings to 48), did people reach for a cupcake. I had the dregs of the cake (the bits that fell off the real slices) and I had a cupcake (okay, there were lots left over... I've had several cupcakes). The cake wins (and not just because carrot cake is the best cake on the planet): the cake/frosting ratio is better, the distribution of frosting is better, and the cake has more moist surfaces.
I'm hereby committing myself to the cake camp. I'm a cake enthusiast.
Here is what I concluded after sitting through another school board meeting tonight:
1. No meeting should run until midnight -- at least no meeting where lives are not at risk.
2. People talk about transparency, yet most have no idea what it actually is.
3. Communication between individuals on basic information -- like the time and place of meetings or basic facts on data or timelines -- is a waste of time. That information, even if only one person asks for it, should be immediately and consistently be made public.
4. Acronyms should never be used in a public forum/meeting.
5. Ad Hoc committees should actually get to function as committees and not just as proof-readers for plans generated by an administration that has a stranglehold on the data needed for a real committee to generate viable plans (plans, not plan!).
6. School boards -- any board -- should not wait to be told what it will get but should ask for it wants.
I can barely describe how frustrating it was to watch an elected board try to lavish praise on students, teachers, and principals, debate procedure in an open forum, analyze school performance data, and sidestep the looming budget crisis in the district. Oh, how I want to push the board to get on the front end of the message, to look proactive, instead of reactive. There was a glimmer of hope in one resolution offered hours into the meeting but it was killed by the rest of the board's 'wait and see' approach and nauseatingly-high levels of civility.
And no one should say to me "we face tough choices..." It is time to tell me the choices and don't ask me to sit through 3 hours of minutiae to hear it.
I have an enormous amount of respect for the school board and the commitment its members have made, but we can do better.