surgery

Grateful.

Yesterday was Thanksgiving day, and I had a lot to be thankful for. Just a few weeks prior, I thought I might have to bail on the holiday altogether, as I had been bailing on many things right and left since September. But thanks to my successful surgery and my gradual recovery, I had a wonderful day that managed to keep the majority of beloved traditions intact.

For the past four years, I have been participating in our local Weight Watchers 5k Turkey “Trot” (mostly a walk, although I did partially jog it a few times). This is something I really did not want to miss; starting the day out with some good company and activity. I had missed my WW members so much and I was hoping to see some of them there.

Hooray! Quite a few of them were there and it was great to walk along the shoreline with them. Pretty soon, though, I was feeling like “whew you guys are walking awfully fast!” and I fell back to the group behind them, and then behind them, and I was walking slower and slower and then I felt my gas tank start to sputter. I knew I had to turn around to the start point. I didn’t measure the distance but I was guessing it was maybe half – like a mile and a half? The last few blocks back to my car felt like forever. I waited to meet up with them coming back the other way and got to see the fabulous Julie, who has been generously and enthusiastically holding down my meeting for me in my absence. I am forever grateful for HER for giving my members consistency while I’ve been away.

It was tiring, but I was really really happy to have gone, and to be out there on the shore at sunrise. It felt like the beginning of a new day.

The triple challenge for drive-walk-drive, from 6:30am-9:00am pretty much took the stuffing out of me. I went home, gave instructions for various food preps, and took to my bed for several hours. Whew.

Right before dinner, we had a little holiday card family photo shoot.

My family has been amazing. A billion more gratitude points for them. They lifted all the heavy pots and pans, reached into high cabinets, chopped and prepped and stirred and did everything that I couldn’t. It all came together into a beautiful meal.

After dinner, I needed another very big lie-down. The one task I had taken on was the Making of the Pan Gravy, and standing over the stove with my neck bent over the pan didn’t prove to be very comfortable in the long run. I was incredibly grateful (AGAIN) to everyone for doing ALL of the cleanup while I took some medication and lay on the couch.

Round 3 of Thanksgiving tradition: dessert and games! We had good friends come and join us for the grand finale of the evening. We have been playing games after Thanksgiving dinner for as long as I can remember, and it always ends in great hilarity. This time we played the old chaotic game of Pit, and then moved on to Balderdash so that all 14 of us could participate. We were laughing so hard we were wiping tears. Good times.

By ten o’clock another wave of major droopiness was setting in. But that was fine. All of the major holiday traditions had taken place: turkey trot, family photo shoot, dinner, friends and games. I managed to get through out with several big rest breaks and not a whole lot of pain. Considering where I was just four weeks ago, this was nothing short of a miracle.

Today is rest day.

November 29, 2013 2

Post. Op.

So, it finally happened: I had a cervical laminotomy, microdiskectomy and foraminectomy on Wednesday afternoon. I had been hoping hoping to avoid surgery, but after eight weeks of really relentless pain, I was glad to try something that promised the hope of relief. I won’t lie, I was nervous. And emotional. But ready.

We got to the hospital a few hours ahead of the 3:30pm surgery time. I put on my stylin’ hospital gown (very nice design, with a big pocket in the front!) and settled in to wait. I was visited by the neurosurgeon, the anesthesiologist and the OR nurse. Finally they wheeled me into the operating room. The last thing I remember was going through the swinging doors that said OPERATING ROOM on them, and then… nothing.

I woke up and there was a nurse who kept saying, Take another deep breath. Another one. Apparently I had to hang out in recovery for a couple of hours because the breathing thing wasn’t happening to their satisfaction. I had about a minute of “I think I’m going to be sick” but they shot me up with anti-nausea stuff right away and nipped that in the bud, so for the first time I didn’t have terrible vomiting after anesthesia. I was very grateful for this.

Finally they brought me up to my room where Mr. McBody had been waiting for me. I was so happy to see him. And by the time I was awake enough to notice, I realized that the arm/shoulder blade pain that has been torturing me for two months was gone. GONE. AWAY.

I did a lot of sleeping. I managed to get up, with a lot of help from the nurse and Mr. McB, to the bathroom. The next day (Thursday), the physical therapist came by and stated we were going for a walk around the hall. This sounded very ambitious to me, but lo and behold, holding on to the IV wheel, I did it.

the physical therapist took me on my first walk

There was a big board in my room with all of my pertinent information. One thing they do is ask every several hours, What is your goal? (I thought this was kind of amusing). I said my goal was to go home.

I got home around noon on Thursday. I think I slept most of that day. Friday and Saturday I felt pretty sore in the incision area, which they said was to be expected. Even though my incision was pretty small, it was deep and a lot of stuff had gone on in there. As Mr. McBody is fond of saying, “they really raunched around in there.” He was able to get ahold of my surgery report which I found very interesting.

I had noted that there were these two spots above my ears (on my skull) that were very, very sore and tender. Then I realized that this was because my head was clamped to the table!

The head was secured with the Mayfield head fixation device

Which I suppose was a good and necessary thing. I was taken by how many times the words “careful” and “carefully” were used in the report. Like a dozen. Somehow this made me feel good. I mean, he wouldn’t say “casually” or “messily” but I liked that he made a point of being “careful.”

It became clear that there was a large disk herniation causing marked compression of the ventral nerve root at its exit from the spinal canal… the larger pieces of the herniated disk were mobilized…this resulted in immediate decompression.

Reading this, and talking with the surgeon the next day, made me feel so relieved and also like… so there was a REALLY BIG REASON I have had so much pain. He said that the nerve had basically been strangled and stretched and he was surprised I had been able to go 8 weeks in this condition. I was also so relieved that it was so straightforward – there was a very specific, physical cause for my pain and he fixed it.

So since I’ve been home, I’ve had different pain. The place where the incision happened has been pretty sore, but it mostly bothers me when I’m changing position. (lying down to sitting up is the worst) Once I’m in the new position, it kind of calms down and then I’m good unless I move too much. It’s a completely different sort of pain, and I am noticing that it is improving every day.

Yesterday, Lily came by and took me for a walk up on the trail. We went a whole mile and although it was exhausting, it didn’t make my pain worse. So YAY!

I feel like I am finally on the road to getting better. I’m still not able to drive (too much head turning) and I don’t have a lot of energy, but that terrible, awful stabbing pain has left the building.

I didn’t get to Minneapolis this week. Which was sad and disappointing. But tonight I am actually going to show up for something on my calendar. I’ll be reading from this new book tonight and I’m going to be out in the world, even for just a few hours.

Yay. Whew. Yay.

November 17, 2013 24

(Getting To The) Moment of Truth

This weekend was such a mixed bag. Yesterday I had that great walk in the park. Last night some good longtime friends came over and brought us a beautiful dinner. It felt so good to hang out and laugh, to eat good food and visit with friends we’ve known for decades.

This morning I woke up feeling pretty optimistic and confident. I decided, it’s probably time I start really cutting back on the prescription painkillers I’ve been taking. Narcotics. Way less than I was at the start, but still way more than I want to be taking. I tried taking some over the counter Tylenol in hopes that I could maintain my level of comfort. We planned to go out for another little walk in the park, but it felt really different than yesterday. By the time we had driven up from our house to the parking lot (about 1/4 mile), the familiar stabbing near my shoulder blade had started up.

I took a deep breath. This is not going to get the best of me, I said. We walked maybe a total of ten minutes and at that point all I could think of was coming home and getting horizontal.

Discouraging. I gulped down my pill and lay on my back. Again.

Tomorrow the surgeon comes back. I was still hoping to get to Minneapolis on Thursday. But I think some kind of reality hit me today. When I realized that even though I am so much better than I was a month ago, I am still so far from normal.

Here is the hard truth. I still can’t:

work (any of my three jobs: physical therapy, writing or leading Weight Watchers meetings)
get through a day (0r night) without prescription pain meds
exercise in any meaningful way (including: Nia dance class, work out with my trainer, run, swim or ride a bicycle, lift weights or do any of the workout videos in my house)
carry a purse or a backpack
drive my car, or independently get myself anyplace outside my house
pick up anything heavier than a coffee cup
prepare meals for my family that involve more than a microwave
go shopping or run any errands
do anything that involves being upright for longer than an hour maximum

People, these are a LOT of big things on the “can’t” list. Yes, I am super happy for the progress I have made. But this has been going on too damn long. Too long. An entire season has passed by while I have been down.

The surgeon comes back tomorrow. I expect we will probably have a conversation sometime in the late afternoon or evening.

I’m ready to be done with this.

November 11, 2013 7

ThinkingThinkingThinking

Lying around like this gives a lot of opportunity for thought. I’ve been reading, thinking, meditating, contemplating. Sometimes whining and complaining. A few things I’ve been thinking about lately have been:

What’s worth it? In Weight Watchers, we often consider our choices in terms of deciding whether something is “worth it” or not. Is that donut or piece of chocolate worth it? Sometimes it is. Sometimes it isn’t. There aren’t hard and fast rules for these things. And I’m finding that the same question comes up for me regarding being up and active during the day. Is it worth it to take a shower? To spend those precious upright minutes in that way? Knowing I’ll have to pay for it later? I didn’t shower Friday or Saturday. I was resting relatively comfortably and I just did not want to break it by getting up and “blowing it.” But by Saturday evening, I was soooooo depressed by feeling grungy and unshowered. So by Sunday morning, it was MORE than “worth it” to get up, take a shower, put on clothes and dry my hair. I ended up lying on my ice pack, medicated up again, but it was worth it to me. I needed that shower.
I think I’m getting better, because I am much more aware of being bored/restless. For much of the past several weeks, it was more of a matter of survival/getting through the next several hours. Now I’m a lot more aware of being bored and antsy. I want to get OUT of here. I want to DO stuff.
How good is good enough? I think I am definitely improving, but I am also definitely nowhere near better. I think this means that surgery is coming. Maybe next week. I hate not knowing. But I also know that this “plateau” is not where I want to be.
I MISS THAT LIFE OUT THERE. This weekend, seeing so many of my friends/heroes doing the New York City Marathon, other half marathons, etc., I was just longing to be out there with them in any capacity. I am really hoping I can at least complete a 5k (walking! anything!) before this year is up. That is my new goal.

November 4, 2013 5

Step by Step

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.

Thank you so much.

October 29, 2013 11

Side Effects

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.

October 27, 2013 7

Another Week Down

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.

October 18, 2013 10

The Week In Which I Cried A River, then Found Hope

So it’s been a rough couple of months out here. I’ve basically been having nonstop right hip pain ever since the Oakland half marathon, and it’s been bumming me out big time. The hardest part has been not knowing for sure what was wrong – was it a muscle pull? Bursitis? For a month or so I thought it might be due to some pretty big fibroids I have. But although they are clinically classified as “huge,” they have not grown or changed in size since 2009. So my gynecologist was not ready to do anything drastic until I got a complete workup from an orthopedist.

I finally went and had that evaluation on Wednesday. First he did a physical exam. He said he was pretty sure that I did have hip arthritis, and also based on my symptoms, pretty sure I am going to need a total hip replacement.

Thud.

(that was my heart falling out of my body onto the floor)

I had been sort of bracing myself for this possibility. I tried to recover myself quickly and then I asked, “But what about running?” I think I had this picture in my head, like, as soon as I can just get FIXED, then I can carry on with all my usual stuff, that has, been by the way, on hold for a long time. He said, you know, people are going to do what they’re going to do, but we really do not recommend it. Especially for a young person, we want that new joint to last a long time, and the more you use it, the faster it will wear out.

And then I started crying. And pretty much didn’t stop for about eight hours, until I passed out from sobbing. I had to go to my Weight Watchers meeting. I drove past the site of See Jane Run and totally LOST MY SHIT.

I thought, that was my last race. Of my entire life. I thought, I was going to do that half marathon. And now I never will. I was choke-sobbing all the way to the parking lot of my WW center. I tried to pull myself together. A few of my observant members noticed that I looked like hell. They asked me if I was having a bad day. I really could not even talk about it for fear I would start hysterically wailing right there. I went and hid in a storage closet until the meeting was supposed to start, and miraculously I got through it more or less. It was frankly a relief to talk about SALADS for half an hour.

I got back in my car. The waterworks resumed. I had this image of coming into the house and seeing my beloved medal rack with all my race bling hanging there. I was wailing as if the world was over. Part of my world WAS over. I went home and crawled into bed. I felt like I was seventeen years old and the love of my life was breaking up with me. The love that I had never thought I’d have. Who ignored me my whole life and then finally turned their attention to me and said I was worthy.

Mr. McBody came in and held me as I carried on. I told him that he was not allowed to utter the words “swim” or “bike” until I deemed it acceptable. It was like when we lost our first child. People kept saying I would go on to have other wonderful children. Which turned out to be TRUE, but at that moment it was the last thing on earth I was able to hear. So, I might go on to have a wonderful biking or swimming life, but at that moment I needed to mourn the running.

Sometime during all this melee, I received a text from my dear friend Carla. She texted, Have you seen hiprunner.com? They have an e-Book….

I took a look at the site on Thursday, when my head was throbbing and my eyelids looked like giant waterbeds. I made some sort of wild noise of disbelief and joy as I read about other runners who had undergone hip replacements and who were… RUNNING! WHAT!?!?!?!?!? I immediately posted a comment of OMG OMG OMG are you kidding me?! I received a very warm welcome and an invitation to join the Hip Runners Club. Did I want to participate? HELL YES.

So. I have dried my tears. I am dusting myself off and looking toward the next whatever-it-is. I don’t know when this will actually happen because I need to find myself a new orthopedist (the one I saw this week is retiring) and I am going to find one who believes that some form of running post-op will be okay.

And I’m gonna order myself this T-shirt. Game on.

July 26, 2013 29

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