It’ll leave you breathless. Or with a nasty scar.
Maybe both.
There are a lot of parts of the past week I don’t remember. And that’s probably a good thing. But here’s an account of what happened, and where we’re going, as near as we all understand it right now.
Katie and I left BG around 4 on Friday for the BGSU-Maryland football game. She drove Angel – she always drives; my driving makes her queasy – and I rode shotgun, working on school stuff, and sleeping on and off. We made stops. Lots of stops. I was 2,000 steps shy of my daily goal of 12,000, and I was trying to get at least 500 steps at each rest stop. I folded myself up and slept a lot after 10, as we entered into Maryland on I-70.
At 12:30 a.m. Saturday, we arrived at Betsy and Ben’s, about halfway between Baltimore and Washington, and I fell straight asleep without pain, without a problem.
Two hours later, I woke up in pain. I hobbled into the bathroom and turned on the light. I looked down at my right leg, and it was definitely darker than my left. I looked around and the back of my calf, and there was no definition. I pushed on my foot, and it went fleshy colored for a second, and then went back to purple. In that moment, I knew this was another deep vein thrombosis. I hobbled back to the bed, and tried to wake up Katie, who’d only fallen asleep 50 or 60 minutes earlier.
“I think I have a blood clot, honey,” I said, as calm as I could. She wasn’t having it. “No, really,” I said. “You need to get out of bed and look.” She got up, and checked it out. I went out to the hall and knocked on Betsy and Ben’s door – “Hey guys, I need help. We need to get to the ER.”
I hopped downstairs. Katie, Betsy and Ben met me, and Betsy pulled the car around. Ben stayed home, the rest of us got in the car, en route the county hospital. The whole way there, I felt the leg getting worse. It got harder and harder to maintain composure. By the time we were in the ER doors, I was sure it couldn’t get worse. But it did.
It was visible even through my jeans that the leg was getting larger and larger. I couldn’t pull my cuff past my calf. I was in a ton of pain, but more than that, I was scared. There was a decided lack of urgency on the ER’s part, even as the patients ahead of me were checking out at the desk, so they could leave and get some McDonald’s, and come back. Triage checked me out, told me there was a line for the ultrasound, and they really couldn’t do anything for me but a vicodin.
If you’ve ever had one of these things, you know vicodin may as well be a lollipop. I was shakin in pain, but moreover, shaking in fear. Last time this happened, the word ‘amputation’ had been tossed around. And in the back of my head I knew that at any second, one little piece of that clot could burst off, and I’m done. Dead.
And the triage nurse’s suggestion? “You need to calm down.”
Oh. Thanks.
Finally, after nearly an hour, we got back to ultrasound, and the ultrasound tech was the first person who really saw that something bad was happening. As soon as she drove the probe into my leg, she’s like “Oh. Oh. Oh my. Oh. This is gonna hurt. This is textbook. It’s beautiful, I mean, I know it’s horrible, but this is textbook!” She got us to an ER room, where we got a great nurse, and a good doc. By this time, my pain is a 12 out of 10. Katie is stroking my good foot to get my mind to focus on that instead of the pain. It’s barely working. I’m not breathing. They shoot me with morphine, twice, and I feel the warm rush over my chest, but never even a sliver of relief from the pain. It’s horrible. My mouth dries out. The docs can see it, and they order up dilaudid. Finally, the pain comes down, even a little bit. Our doc is back and forth, trying to get a vascular specialist from Johns Hopkins on the phone. It’s fruitless. He tries University of Maryland Shock/Trauma, and finally hits jackpot. He tells us they’re trying to arrange the helicopter to come get me.
Helicopter? Oh, fudge, I think. This is more serious than I thought – and I thought it was pretty serious.
Betsy and Katie negotiate on who, if anyone, should ride the helo with me. Betsy’s an old pro from her time with the Coast Guard, Katie – well, if you think my driving in the Corolla is nauseating, wait until you meet my old friends pitch and yaw!
As we’re figuring that out, they come in and say, nope, you’re going in a regular-old ambulance. Time passes
And
So
Do
I
* * *
The dilaudid dream state envelops me. And my memories from this point around 0600 Saturday through Monday morning are really, really sketchy. I remember getting strapped onto the transit stretcher, and bumping up into the ambulance; two-person team, both with big personalities, and I remember thinking that I wasn’t sure I was ready to deal with big personalities. I can see just enough out the back window that I know we’re having a tough time getting out of the parking lot, and then I see runners. Later I learn that there was a 5K run that morning at the hospital.
Bitter irony, that.
Occasionally, I can peek over and see Betsy’s car trailing us. Traffic picks up, and the highway widens, and I assume we’re getting close to Baltimore. I see the metalwork of a stadium.
“Is that where the Ravens play?” I ask.
“Yeah,” says the paramedic in the back of the ambulance with me.
A million awesome Cleveland insults and retorts go through my mind, and then I remember that I’m strapped to a bed with needles in me.
“Oh.” I say.
The ambulance rolls into an ambo bay that’s like something out of Robocop, concrete, steel, stink. They get me out, and the jarring ride over long-neglected city streets has me squealing in pain again. Katie hops out of Betsy’s car, and is by my side immediately. We go into an octagon of elevators that’s like something from Harry Potter. Which door will we choose?
We go up a floor. Wrong. Down to another floor. Wrong. Ambulance crew can’t remember where they’re taking me. We go back to the Chamber of Secrets, and dash down another hallway to an elevator that he’s “pretty sure” will get us where we need to be.
We hit the sixth floor of the shock trauma building. It’s the Critical Care Resuscitation Unit, and there ain’t enough dilaudid in the world to calm me down now. They roll me right into a room, and there’s a team of 6-8 doctors and nurses waiting for me. They know who I am, everything about my history. I’m more than a little freaked out, because I know they aren’t rolling out the red carpet to be polite.
Again, the details come in and out for me. My pain is, most assuredly, under control, because I barely know who I am. I remember Betsy coming in at some point; I have no memory of Ben coming in, though I know he did. I remember us turning some college football on the TV, but being bummed we couldn’t get the BTN for Maryland-BGSU. A surgeon comes in, a wryly funny guy, Sri Lankan. He sets out the options: We can do this like they did your last one, blast you on heparin for a week, and let you out of here, hoping the clot goes away. Or we can do a surgery, not without its risks, that will remove as much of the clot as we can, and a follow-up surgery the next day. Option 1 keeps you in here for a week, no surgery. Option 2 could have you out by Tuesday or Wednesday. On timeline alone, we choose the surgery. We FaceTime with my mom, dad, and the kids, who are all up at the lake. I remember the kids looking really scared. When I talk to Joey, I tell him I have some bad news. He starts tearing up a little. I tell him I can see the Ravens stadium from the hospital, and it’s TERRIBLE. He laughs his big, full, from the toes laughter, and I feel better. I pray his laughter always will have that effect on people.
By 2 p.m., they’ve got me wheeled out. I’m scared inside, but not sure how to express it outside. I remember them getting me to a hall of operating rooms, and I tell the nurse I really have to pee. She gives me a urinal. And I sit there for the better part of five minutes with shy bladder syndrome. The anesthesiologist comes through to explain what’s planned.
“We’re not going to put you all the way under. I’m going to be monitoring you, and we’ll put you in deeper, but never all the way under.” Then they tell me they’re gonna catheter me. Without being all the way under. I freak. NOW I’m able to pee. My nurse is disapproving of the sleepytime docs. I’m anxious, again, as we go into the OR. I remember sliding over to the operating table. I remember a mask over my face. I remember waking up, and being asked to roll on my belly, and as I do, I REALLY notice I have a catheter, and then, I’m blanked out again.
* * *
Four hours later, I wake up in a dark room with a curtain. As I remember it, I see a doctor or nurse, and said “On your left,” in the most awesome Captain America joke I’ve ever made. As the nurse told it to me a little later, I woke up and asked if the admiral and the director knew what had happened to me. Which admiral, and which director, I do not know.
And this is where my blank spaces get really, really blank. I remember virtually nothing from the rest of the evening, except that I couldn’t ever seem to get my left leg comfortable. This, it turns out, is because there was a large drain coming out the back of my calf. I’m honestly very glad I do not remember much of this. I remember telling everyone how hungry I was, and then eating two bites of a cookie and nearly vomiting.
Sunday morning, I apparently wake up to a text from JD. Then, I am told, I call him at an indecently early hour and prattle on about God-knows-what. I text my nurse from the Cleveland Clinic, Laura, about my condition. She texts back and asks how I am doing, and I shoot a selfie with my tongue out. I do not learn about this until Thursday. I find myself very grateful today that I apparently didn’t do any worse than that.
Around lunch, I start remembering a little. I remember them saying my second surgery was going to be in the afternoon. I remember Katie having to leave, to go home and be with the kids and try to keep the ship together through this storm. I’m scared to see her go. I am teary, and scared. There’s still one more surgery to go. I tell her to tell the kids, and a friend who's been a blank space way too long, that I love them. I cry a little when she leaves. I cry a lot later, and they bring me xanax.
I may not have Katie physically by my side at this point, but I have Betsy with me, and she’s a rock. Absolute champion. I remember Kristin getting to the hospital, arriving on a train from DC; and one of the greatest hugs I’ve had. I remember two fantastic nurses, Christina and Tina, more than anything else on the hospital-side this day. They’re awesome.
Then it’s back to surgery. Back in the haze. Back in my room, and not knowing where I am, again. Kristin leaves with Betsy while visiting hours take a two hour hiatus for shift change. I cry again. I sleep, a lot. I FaceTime with home. I FaceTime with my sister and her family. I try to make some videos for my classroom, which is a little of a blank space in my heart – I want to be back with those kids. My kids. My biologic kids, and my East Side kids.
* * *
Monday morning, I start to come out of it all. I have a new nurse again, Katherine, and she’s fantastic. Betsy is back; Kristin is back. Think about all that for a moment, and it brings you to your knees in thanks. A sister in law, and an old time bestest of friends, totally skipping work to make sure you’re OK. There’s almost nothing more humbling.
The fog is lifting. I have one vicodin today, and that’s it. The dilaudid’s gone, and the goofy gas from surgery has worn off. My mind is back in action, and that’s a little dangerous, because I have zero information. I don’t know what the plan is. I don’t know what they found, and I really don’t know what they did. Kristin and Betsy start filling in the details, and they talk about a blockage in my inferior vena cava. The way they talk about it, I am sure they have something wrong. That’s what they found on the left side, right?
I get frustrated. I feel pretty decent. The catheter comes out. Katherine gets me out of bed, and I use a walker to hobble around the room a bit. I poop. I’m ready to go home! But I still don’t know the plan. The doc in charge of the ICU tells me I’m cleared to go to a ‘regular’ floor, but there aren’t any beds. And as long as I’m in the iCU, I have to be hooked up to a bunch of monitors and whatnot. I’m more frustrated. I want PT, so I can check that off my list. OT, to get me another step closer to the door. Katherine keeps working with me, and gets me out of bed a couple more times. Betsy saves the day repeatedly with pita bread. My stomach is still in open revolt. I’m afraid of what the hospital meals might do. So I eat warm, soft pita. And it’s the best thing I’ve ever eaten.
Another shift changes, and Betsy and Kristin are off again. Kristin’s back home to the District, Betsy’s back after shift change… with more pita! It’s night again, and I watch the Orioles. Late that night, Jerry – a man who is a friend through a friend – shows up in my room. He works with Hopkins’ APL – he’s a lawyer who deals with issues surrounding space exploration – can you even imagine how cool that is? We talked about a probe they’re sending to the Sun, with a delicate dance between protecting it from the star’s power, but getting enough data through to be scientifically meaningful. And we talked a little about those old Voyager craft, leaving the solar system, drifting into blank space. I start to drift, too.
* * *
I wake up at 0600, surrounded by vascular docs. Finally, I am awake and aware enough to start asking questions. What happened? Where do I go from here? They explain that the IVC was completely blocked – in surgery, they worked up into upper leg and pelvis as far as they could, but there’s still significant blockage there – as if it had been sewn shut. They tell me that the contrast showed that my body had adapted significant alternate pathways for the blood, that may be enough to keep things going down there. They tell me they’ll get me out of the hospital today – music to my ears – but have to wait on a few reports.
This Tuesday drags on. Every time the broken curtain opens, I expect the news of discharge, but it’s a plumber to fix the toilet, another piece of paperwork, another delay on getting scans. The bright spots through the whole day are Kathleen, who for my money, may be the greatest nurse who ever lived, and the doctor-in-charge of the floor, a maxillofacial surgeon who absolutely exudes cool. They’re fun people. Kathleen and I share Jesuit heritage, and we have a few cool moments talking about lives influenced by the idea of Ad Majorem Dei Gloriam. PT comes through, and I nail it – down the hall without a walker, up the stairs, down the stairs, back to the room. I am cleared. Within hours, the papers come, and I go back home with Betsy, to see Ben, who shouldered all of the baby burden, and Tessa, cute as a button. I’m cleared for flight the next morning, to make it halfway home.
* * *
Well, maybe not flight. Sitting’s a bad idea, a procession of doctors tell me that last day. Long flights aren’t in your vocabulary anymore, one says. You don’t do long car trips anymore, he continues. You’re up and out for 15 minutes every hour of driving. I watch my autumn plans fall apart – the long anticipated trip to New Orleans for the “Understanding Sacrifice” roll-out, gone. A few other hoped-for trips, probably not happening. I’m sort-of grounded.
And I start to realize that grounding is probably going to have other effects, too. Running on the one bad leg from the 2011 DVT was tough. It’s probably just not possible on two legs with reduced return capacity. Biking is out forever; I’ll be on blood thinners as long as I live now, injected twice-daily into my abdomen. So I guess I’m a swimmer now. Or a stationary biker. I like swimmer better.
It’s going to be a lifestyle adjustment. It’s going to be a reinvention of who I am. Travel and running – that’s who I am. Or at least, a big part of who I am. I guess it isn’t so much anymore. I am working around grieving that in my head and heart right now. That’s the blank space far bigger than all the details lost in the dream-state of drugs; a blank space in my personal identity, who I think I am.
* * *
I’m in the books for vascular follow up at Cleveland Clinic, possibly as soon as next week. It’s entirely possible there’s a big surgery looming in the wings. I hope not with all my soul. It’s also possible my situation just is what it is, and we live with it.
The blankest space is the space of not knowing. I just don’t know what’s going to happen. I have scans in less than two weeks now; it’s been easy to forget with the crisis of the last seven days that I still have that pesky Stage IV cancer. The weeks leading up to scans are always difficult, nerve-wracking, knowing that it’s possible you get that news of growth, and then a dwindling set of options.
That’s why we still said yes to treatment on Thursday, even after all of the immediate scare. This blood clot battle is dodging a bullet. The cancer battle is still a BLU-82 waiting to detonate. And it’s scary. It’s all really scary.
I’m grateful for the spaces that aren’t blank: Family – blood and adoptive – who have come through in so many ways. Friends who have been there for all of us, 500 miles separated over the past week. And especially for faith. I have been praying a set of prayers for the canonization of Mother Mary Alphonsa – a daughter of Nathaniel Hawthorne who formed a religious order caring for indigent cancer patients at a time when they were cast aside by others’ fear of ‘catching cancer.’ I don’t think it was an accident I had a Jesuit-influenced nurse for half my stay. It wasn’t an accident my Aunt Nora took me to meet Fr. Paul Burke, chaplain of the Hawthorne Dominicans’ Our Lady of Perpetual Help home in Atlanta, who prayed over me, and told me about Mother Mary Alphonsa’s cause.
A lot of you have asked what you can do for us – and honestly, right now, we don’t know. We have no idea what the tally is going to be for the last week's transport and accommodations, but I am guessing you could do a two-month, round-the-world trip for the pre-insurance cost; we aren’t sure if I’ll be in the hospital for another surgery on the IVC. Who knows? But the one thing you can do, if you’re the praying type (and I take absolutely no offense if you’re not), is pray for Mother Mary Alphonsa’s sainthood. She needs a miracle… and so do I. Your prayer might fill a couple blank spaces.
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