It used to be that “overdoing it” meant trying to do an Olympic distance rather than a sprint triathlon. Or doing a half marathon instead of a 5k. I never would have dreamed that “overdoing it” could mean sitting on the couch for an hour. But that’s what happened yesterday. I had what felt like the most modest of days.
I took a shower, got dressed and dried my hair.
I had two visits. I sat kind of propped up on the couch.
I sat up for dinner (total time = 10 minutes).
I didn’t feel like I was pushing it too much. But apparently it was. Apparently I can’t even lounge on the couch without paying a steep price. I’m back to my previous pain medication schedule. I have zinging, burning pains in my forearm and the hot-poker stabbing sensation between my shoulder blade and my neck. It really hurts to try and use a utensil, a pen, a toothbrush. (bending my neck + using my right arm is not a good combination) My stomach is feeling funky.
I’m discouraged. I’ve been trying to take it easy, really I have. But even the smallest of things, what feel like NOTHING, is still Too Much.
I have been reading Jennette Fulda’s memoir, Chocolate & Vicodin, about her years-long battle with a terrible headache that would not go away. I am feeling like there is someone out there who understands. She started by thinking it would go away in a few hours, and then a few days. Starting with over-the-counter meds, then prescription meds, and injections, and MRIs and neurologists and acupuncturists, massage therapists and more. I turn the pages and I keep murmuring, I know. I KNOW.
I am back to wanting the surgery. And thinking, if it doesn’t work, I just don’t know what I will do. But I will take that as it comes.
In the meantime, I’ll be trying another Alternative Treatment this afternoon. We shall see.
So until this afternoon, I was mentally trying to prepare for surgery tomorrow. But things have been changing. I have been getting progressively better since Sunday (2-3 days ago). Whereas last week I was desperately gulping down painkillers every 3-4 hours, I am now down to about two a day. HUGE difference. I am now going long periods of time without having to lie on ice packs. I am relatively comfortable in a flat position. This is all good. But I am still only able to tolerate being up (above a 45 degree angle) for about 10 or 15 minutes at a time. That means a quick shower, lie down and rest, getting dressed, lie down and rest, then another quick blowdry of my hair. Then painkillers.
Still, it is way better than last week. A week ago, I was getting intravenous morphine in the ER and even at 3-4 doses, when I was almost unconscious, I still had level 6-7 pain. That was bad. It was so bad. I am so thankful to not be there anymore.
The surgeon called earlier this evening and we had a good long talk. I really like this guy. He is so thoughtful, and reasonable and smart.
We decided to postpone the surgery for another two weeks and then re-evaluate.
He said I might just keep getting better until I am ALL better. He also said I might plateau at a certain point and when that happens, I am just going to have to see if that is at an acceptable place. For example, if I were to plateau where I am right now, this would NOT be acceptable. As comfortable and improved as I am, I am not about to live the rest of my life lying on my back.
I’ve been feeling great empathy/solidarity with Frida Kahlo these days. And inspiration and awe. Especially images like this. If she can paint, I can write.
I feel like I bought a little more time. To see how things go. I am feeling a lot more alert, like I can do things again. I can write. I can read and get some things done.
This is going to take a lot more patience. We asked the doctor, the difference between resting-healing and surgery, in terms of pain relief. He said the surgery would give me immediate and total relief because the nerve would not be getting squeezed anymore.
What about a chance of relapse if I don’t get the surgery? There’s a 30% chance of relapse (in the next year or two), just because the nerve doesn’t have as much space as it did before the disc ruptured. That sure doesn’t sound like fun. Just saying: if I DO have a relapse of this experience, I’m getting that surgery lickety split. No question.
So I’m back in wait and see mode. I am feeling…. mostly good about this. I have to admit some degree of disappointment because I was getting pretty darn excited about the IMMEDIATE AND TOTAL PAIN RELIEF. But I also know there is are risks with any spinal surgery.
Patience. Patience. I’m learning so much about patience. And again, letting go.
I let go of the Grotto reading at LitCrawl. I let go of our grand 25th anniversary trip to San Miguel de Allende (sob!).
Next up on my calendar is the Adoption Policy & Reform Collaborative Conference in Minneapolis in two weeks. I am scheduled to speak on a panel and perform. I want to do this SO BADLY. For so many big, big reasons. If I did do the surgery tomorrow, chances are I’d be recuperated enough to fully participate. But doing this the nonsurgical route, I am not so sure. It makes it much less likely. I am going to wait until the very last minute to decide. It could just be one more in a long list of letting-gos.
I’m also learning so much about kindness. I’ve been astounded and overwhelmed at the level of support and encouragement coming my way. Lovely gestures of caring and friendship. Today I had three visitors. One friend brought me this fabulous ice pack contraption. And a “happy skeleton” cookie.
Another friend brought some beautiful orchids and my favorite clam chowder from Sam’s Chowder House. I’ve been feeling very, very loved and cared about. Which has been humbling and sometimes enough to make me cry.
I’m mostly feeling a lot of gratitude. A LOT. To all the people who have left me sweet comments and words of support on Facebook, who have texted and sent cards and stuff to cheer me up. Who have brought food to my family, and visited me when I am able, and who have understood when I am unable. Who have listened, who have supported Mr. McB who has really been worn down to a nub by all of this. Who have filled in for me at work. Who have tracked this whole weird journey and just been so nice. Thank you.
Three times now since this all began, I’ve had wild hopes for various medications that initially feel awesome, and then after 12 or 24 hours, suddenly turn on me with mad ferocity. The first one was a patch that gave incredible blessed relief for a day or so. It knocked me out and I was able to sleep comfortably for the first time in weeks. I was so grateful. But the next day, I was overcome with vomiting which began a bad spiral of dehydration and misery. Stopped that.
The second one, I was thrilled at first. It seemed to give complete pain control AND I was alert (maybe even a little buzzed/hyper). I thought, wow, I can actually FUNCTION on this one! Maybe I could even get some stuff done! But by the second day, it had bizarro psychological symptoms that made me feel like a bona fide insane person. I was hysterical, paranoid, fearful and just living some kind of nightmare (and having bad nightmares when I slept, on top of it). That one went into the trash.
This past week, I tried a new medication that came highly recommended from a physician friend for whom it has worked wonders. My neurosurgeon also recommended and wrote me a prescription on Thursday. I tried it out and felt AWESOME on Friday. I was up and about for much longer than my normal tolerance (normal = I can be upright for about 5 minutes before the red hot poker stabbing thing begins, and on Friday I was able to have an entire meal sitting up). I felt great. GREAT. I was so excited.
But then 2am on Saturday morning, the side-effect hell began. Splitting headache. I felt like my eyeballs were going to explode. Nausea. More vomiting. And uncontrollable, out of control weeping. I was, as they say, a hot mess. Despair.
It took all day Saturday and Saturday evening to detox and let that stuff leave my system. Finally today, I am back to baseline. Tired, pain when I get up, but as long as I remain horizontal, I am relatively okay. I took a little field trip to the hospital this morning to get my pre-op testing done (blood, urine, EKG). It wiped me out. But now I am back in my cozy bed, able to eat a little of my favorite toast and yogurt.
I am so ready for this surgery. It’s definitely a go. 3:00pm Wednesday. If you’re interested in the details: a posterior cervical laminotomy at C5-6 and C6-7. It’s going to be done arthroscopically, which I am uber excited about. A small incision. Just done through a little tube, with microscopic tools. I have utter confidence in the neurosurgeon and I feel like it is the very best option I could have hoped for.
I’m estimating that I have lost about 15-20 lbs of muscle mass since this began. I absolutely CANNOT WAIT to begin my rehab, to start gaining my strength back, to be back in the world. I am hoping that by next week at this time, I will be well started on my way back. I couldn’t be more ready.
A lot of people know that I had a neurosurgeon appointment this afternoon. I’m blogging about it here rather than repeat the story every time someone asks, “How was your appointment?”
In a word, it was good. It was hopeful. I feel like there is light at the end of this tunnel.
I liked this doctor very much, and so did Mr. McBody. (for the record, we’ve liked ALL of them so far) He said, there is a chance it might improve on its own. There is a chance you could get through this without surgery. But there is also a chance that this very painful and unbearable condition could go on much longer.
He described a few possible surgical procedures that will most likely bring great relief. One of which was not discussed previously. I’m not going to go into great detail here because … well, I just don’t want to. I feel like I want to make this decision together with this surgeon, my own self and with Mr. McBody. The options that he laid out made good sense to me and I am comfortable with them. I am going to research more over the weekend and give it some thought. I’ll say more when we know for sure what’s going to happen.
We are going to try and put one of these surgeries on the calendar for next week (probably Wednesday). But this depends on getting authorization from my insurance company, and getting onto the calendar at the hospital, and all that. A lot of things need to come together.
I also got a new medication that could possible alleviate some of the dreadful nerve pain. Cross my fingers, it could help. I started it tonight and we shall see.
The plan is to lay low, keep it unstressed and comfortable, and re-evaluate on Monday or Tuesday. If it feels the same or worse and it gets approved, we will go ahead and try to do the surgery midweek. But if it feels better… then we might wait a while longer. Wait another week or two and see if it might continue getting better. Maybe the surgery can be avoided.
So that’s the plan. I’m laying low. I’m crossing all the digits. I’m packing on the ice and continuing to do all I can in the supine position.
But I feel happy that there’s a plan. It makes sense. I’m ready for whatever comes next. I feel…. hopeful.
It is no exaggeration when I say that there is no way I could have survived this past month without my Mr. McBody. He has been my advocate, my companion, my comfort, my nurse. He has cleaned up my messes and held my hand. He has woken up every 4 hours with me at night (sometimes more than that) and helped me keep track of the myriad of medications I’ve needed for all the things that have gone awry in my body. He brings me food and water. Extra blankets and socks for my feet.
He sits next to me and reads me the New Yorker. Including finding me cartoons he thinks I will find amusing.
Nothing has given greater meaning to the words “for better for worse, in sickness and in health” than this past month.
He has seen me through a lot before – but other than high-risk pregnancies, this is probably the longest lasting and most intense and enduring conditions he has ever had to see me through.
He takes care of me in every way imaginable but mostly he is my friend. He stays by my side. He has taken a leave from work so that he could be with me. This means more to me than words could ever say. It is the most precious 25th anniversary gift ever, more than any diamond in the world, more than the trip we were supposed to take. He holds my hand in the waiting room. He is with me. For better and for worse.
That’s a direct quote from Junior. Both of us have had a lot of miserable experience with dehydration. This used to happen with me quite a bit with longer races and it was BRUTAL. Like HERE. But somehow, I did not put all the pieces together this last week and realize that it was the same exact devil. Loss of appetite, nausea, vomiting, sudden weight loss (I was pretty much losing a pound a day and was about 10 lbs down from 2 weeks ago), weakness, just FEELING LIKE DEATH. But since I was already feeling pretty deathish due to the bedrest and neck pain, it was hard to separate it out. It all felt like a version of the same thing. I thought I was feeling bad from various painkillers. I didn’t know which end was up.
But I remember how it used to be after races. I would be literally feeling like death, and then all I needed was fluid, electrolytes, salt. Chicken soup could do wonders and it was like a miracle had occurred. Like putting a dried out old sponge into water, and soak soak soak — voila.
That’s how I feel today. It’s a miracle! I’m ALIVE!
I’m back to my “baseline” which is: fairly OK lying down, more pain when I get up, but overall alert and feeling a lot, lot, lot better. A LOT BETTER! I actually WANTED and ATE a panini sandwich that Junior made for me and it was the most delicious thing ever. I’m on the way back.
It’s amazing what 12 hours of sleep, three liters of IV fluid and some antibiotics (for my urinary tract infection) can do.
That’s what happened after a weekend of pain meds that didn’t work, vomiting, dehydration, low blood pressure, high blood sugar and general misery.
Junior brought me in in the morning and stayed with me, regaling me with tales of her 20-mile hike to a hidden hot spring over the weekend. It was hilarious and kind of like a Junior version of Wild. It kept me very entertained and distracted.
Nine hours of IV fluids to replace what I lost, intravenous morphine that only kinda sorta took the edge off, testing that revealed a urinary tract infection, and eventually coming home.
Praying I can stay in my own bed the rest of the week.
Here I (still) am. It’s getting surreal, isn’t it?
This is what happened this week.
I had an epidural injection, hoping that it would cut down on the inflammation and give me some pain relief. I was nervous about it. But the procedure itself was not traumatic. The bad news is that it really didn’t give me any relief, either immediately or in subsequent days. So that was disappointing. To say the least.
I escalated the pain medications to even higher intensities. The result was about 4-5 hours of total pain relief, and about 2-3 days of complete CRAZY. I mean, I lost my mind. It really did a number on me. Like out of control crying, and a kind of paranoid panic and fear. I felt like I was disappearing. Dissolving. Maybe dying. I was an extremely unhappy little camper.
I stopped taking the heavy-duty pain meds.
The pain is worse. But I don’t care. I have my mind back.
I went for a neurosurgery consult. Because of the size and location of the ruptured disc, surgery is recommended to remove it, rather than waiting the 6 months for the disc material to re-absorb into my body. Mostly because of the profound weakness I am having in my arm. Nerve damage, if left too long, can be difficult or impossible to reverse, and this is my dominant arm/hand.
I’m going for another appointment next Thursday and hopefully will then be put on a schedule for surgery.
I am ready for this.
This has been an incredible experience, really. It is teaching me so much about patience. About understanding who I am aside from what I DO. It has taught me what it really means to conserve energy. The smallest things take so much energy; even lying on the back porch talking to friends wiped me out. I’m still learning.
I’m taking it as a gift to be able to read, to meditate, to sleep a lot. (a LOT) I love it when my friends come and lie down next to me and we just look at the ceiling and talk. It’s very comforting. But I can only take about one visit a day and it has to be very… low key.
When my mind is working, I can still write.
I have had pretty much no appetite. I think because I am burning about zero calories per day. I’ve lost weight. My muscles are thin and noodley. I think my muscle mass has pretty much left the building. I try to be my own home care physical therapist and take myself through the exercises I do with people who are in bed all day. I’m not sure if it’s helping or not.
Those goals I had — tomorrow night is the Grotto Litcrawl reading. It’s still up in the air. I’m going to wait until the last minute to decide. But there’s a BART strike. These events are notoriously crowded and intense. Energy wise, it just might be too much.
Sadly, the trip to Mexico is off. It’s disappointing. What can I say? There will be other chances out there. I’m tripping around my own private Mexico these days, wandering around inside my head.
I know beyond a doubt that this experience is changing me. It’s one of the most challenging things that has ever happened to me, but it is not the worst one by far. I’m learning a lot. In this small space, I am growing.
So I finally got some answers to this vexing pain last week. I went to see a spine specialist (orthopedist) who looked at my MRI and pointed out quite clearly that I have a ruptured cervical disc. The disc material is pressing quite intensely on my 7th cervical nerve, causing this crazy pain AND some weakness in my arm. It was upsetting to see this but also unmistakeable, and also a relief to see in black and white how much absolute sense it makes (all that PT training came flooding back). He has recommended an epidural injection tomorrow to try and bring down the inflammation and swelling. He said it will most likely result in dramatic pain relief (OH BOY! I can’t wait!) and then it will remain to be seen if there is continued weakness from any nerve damage. Then I will have to have a surgical consult, and I don’t like the sound of that, but I am just taking one day at a time, which is about all I can do.
It was a pretty rough weekend. Mr. McBody was away at a conference all weekend, and I had a lot of time and space to wallow around in a hazy painful cloud. It got a little surreal at times. I learned by Sunday that it is a good thing to try and keep a schedule. To try and be as functional as possible. I had some company come visit on Sunday and it made a HUGE difference to shower, get dressed and see friends for just a little while. I have learned that I have about a two-minute window from lying down to sitting or standing up, and after that time passes, it just hurts like the devil. However, assuming the “ballerina” position does take some pressure off. When I was at the doctor, he said that this is a classic diagnostic tool and he sees it all the time.
I was really upset when I went to the doctor on Friday, and they told me I had missed my 9:30 appointment. What! It turns out, in my narcotic haze, I had heard “October 11th” and I just kept focusing on the “11” part of it, and showed up at 11:00. But the doctor saw me in the waiting room, looking desperate with my arm over my head, and he squeezed me in. I think he pretty much diagnosed me from across the room, even before seeing the MRI.
It’s amazing how life can just shift from one version of reality to another. In the span of a few weeks, I have gone from being one of the world’s busiest people, to someone who needs to gather every bit of endurance and energy just to take a shower or get through a five-minute meal at the table.
It’s been a real opportunity for reflection. To really consider my priorities, my identity and what is important. It means a lot to me to be able to continue to write and read. I’ve been snarfing down books. I spent all day Friday reading Alice Munro. So excited about her Nobel Prize. I’ve also been able to spend some real time working on my own writing and editing, when I’m not knocked out by painkillers. I have been able to enjoy some pretty alert hours every day.
I started reading Dave Eggers’ The Circle, yesterday, and I’m almost done. It’s pretty mesmerizing, especially under the circumstances. Right now I feel like I would go mad without social media to keep me connected to the world. But there’s a balance. There’s nothing like human contact, face to face. There’s also nothing like snail mail. I got this awesome get-well gift from one of my writer friends which made me laugh out loud.
It is amazing to me how quickly a body can degenerate. Today I stepped on the scale just for curiosity and I am down more than five pounds. I am sure this is 100% muscle wasting. It takes all my strength to pick up a wet towel. I get shaky standing up even for a few minutes. I feel like I am just dissolving. But I also know that once this pain is managed, it also does not take too long to regain what has been lost. I’m not totally distraught over it, it’s just kind of remarkable.
I’m eating well, under the circumstances, even though I’ve had about zero appetite (I’m burning about zero calories, too). Before this all began, I had hired a Task Rabbit as kind of a “sneaky caregiver” for my mom. She often is lonely and bored in the afternoons, while we’re all (normally) rushing around working. I thought it might be a good idea to have someone help out with cooking a couple of times a week, with her involvement, so she has some company, AND so that we have some decent food to eat rather than some takeout on the fly. As it turns out, this person has been an absolute godsend. Whereas she was first helping out because I was too busy, now she’s helping because I”m just incapable. THAT part has been like a dream come true. I scroll through Foodgawker and send her links to things that look good, and voila- a few hours later there it is on the kitchen table. AND, my mom really likes her. It’s a win-win.
The last few days have just felt like interminable WAITING. Waiting for an answer – and now waiting for a treatment. I really, really hope that this injection will do the trick so that I can get back to my life. But it will be “going back” in a different way. I’ve had a lot of time to reflect on my priorities. I don’t want to just be rushing around madly from one thing to another, just because I can. I want to slowly re-integrate the things that really matter.
I’m also zoning out a fair amount. I watched the entire first episode of Scandal, which I’m finding addictive, ludicrous and entertaining. Probably just the medicine. And I’m getting to be all long distance doting-grandma to Juniorette’s new baby. Everyone, meet Junie. Isn’t she adorable?
So, tomorrow morning I’ll be going to the Surgery Center and facing the needle. I’m ready. SO ready to turn some kind of corner.