Life Support

For the last nine months I have struggled to write meaningfully and intelligently about Shannon's death, but intelligence and meaning elude me. I want to give a name to what grief and loss feel like, but all words disappoint me: none are good enough. I want to work out in my own mind how to learn to be alone and move forward, but I see only here and now. The future is a concept I don't really believe in any more. I fight for meaning or reason or anything that makes sense, and I end up where I started: confused and psychically mute, unable to speak because I have nothing to say.

I have diversions enough that keep me from wallowing in the psychic void where pain lives. Work keeps me busy, although I find it increasingly irrelevant except as a way to generate honest cash. I care about doing a good job, but that's more a manifestation of neurotic perfectionism than anything else. Managing my health takes more time that it ever has, but I've never had surgery or a blood clot before. It takes time and slows me down, but I don't want to die or live with complications of a mismanaged surgical recovery. I see and talk to friends and family who are always there if I need them, but they generally give me the space I asked for while I try to rebuild my life.

And that is where I hit the wall: rebuilding. How do I do it? Where do I begin? What do I want it to look like? Are my best days behind me? What happens now?

I'll be 46 on Friday, but I am as unsure of myself as I was when I was a teenager starting college. Less sure of myself, to be honest. Back then, I was too naive to understand that I didn't know everything. I didn't have the weight of life and experience tugging me down. I can't think clearly about anything that isn't immediate these days.

I have maintained enough sanity, however, to realize that I was on the edge of an abyss, staring down into its eternal darkness. If I teetered and fell, I might or might not be able to claw my way out. Through my clouded perceptions, I could see that fact clearly. It's happened before, and even the prospect of it happening again scared me to my bones.

It scared me so bad that I called my doctor to talk about “mental health issues”. I told him about the abyss and my fear of falling. To my surprise, he listened and believed me. I spoke honestly and even cried a little. And he listened.

The long and short of it is that Celexa (an antidepressant) is now a part of my nightly pill regimen that also includes a blood thinner and blood pressure medicine. The last two are supposed to prolong and safeguard my life, and the first is supposed to help make me care about it again.

He's a good doctor, and I'm fortunate to be his patient.

It's been a couple of weeks, and I'm thinking a little more clearly, but not always. The crazy pills take 21 days or so to reach full impact, so we'll see where I am on clarity in a week or so. Somewhere, deep inside me, there's a will to live. A lust for happiness, in whatever form that might take. That part of me isn't dead, but it's on life support.

Tea Times

My hip surgery went remarkably well: a textbook case, I was reassured. My biggest problem post-surgery was nausea from the anesthesia (a common reaction, they said). So once I was able to hold food on my stomach the next morning, they released me with the best of prognoses. I went home and began my period of exile and recovery.

I learned to walk with crutches and how to use the motorized shopping cart at the grocery. I took pain pills and stared numbly at the tv. I worked on projects in the two-hour windows between when the meds began to wear off and the next dose hit.

Days dissolved into nights and then reconstituted into days again. I was bored silly and craved a change of pace. I should have been content with bored and recovering normally, I learned soon enough.

Four days in, my foot and leg began to swell inexplicably, and when they grew large enough for fear to override my instinct to ignore such inconveniences, I went to the emergency room (although not before calling a 24-hour nurse and almost daring her to tell me it was nothing). Three vials of blood and a sonogram later, the ER doctor came in with a terse diagnosis that belied the gravitas of his words: “You have a blood clot.” That was it. No explanation of how it might have formed or how serious it was.

I began to get a sense of the urgency those five short words implied when he immediately asked me if I had a family doctor I could see within 24 hours and was visibly relieved when I told him I did. “Good. We’ll get you fixed up tonight, but go see your doctor tomorrow.”

The nurse gave me a shot of blood thinner in the stomach (“it absorbs faster that way, honey”) and some pills (blood thinners, also), then sent me on my way. But not before I signed papers that conditioned my release on my promise to see my regular practitioner within 24 hours. Since it was 3:30 a.m., I hoped that it would be significantly less than that.

At the doctor’s office the next day, I was met by a large man who was not my doctor but who whisked me off to an exam room, nonetheless. Thus began my education about blood clots (aka "deep vein thrombosis" or "DVP").

It turns out that the clinic where my GP practices has an entire department devoted to patients taking blood thinners, which I quickly learned was the treatment of choice for clots. The large man was a Coagulation Management Certified Nurse, and he would be my guide through the next six months of treatment. He would teach me the ins and outs and dos and don’ts of survival.

He taught me how to give myself a shot in the stomach (the fatty tissue) so that I could do so myself every twelve hours for the next 7-14 days. He told me to take the pill that I will be taking for 6 months at the same time every night. That he would tweak my dosage until it was right. It needs to make my blood thin enough that new clots don’t form, but not so thin that I hemorrhage.

Then we got to dietary issues that affect how the anticoagulant warfarin (aka coumadin) behaves. Green vegetables contain vitamin K, which mutes the effect of the medication, so in order to calibrate a good dosage, I have to eat the same amount of them consistently. I can have all I want as long as I have the same amount every day. The more green I eat, the more warfarin I have to take.

Herb teas are out—there exist scant clinical tests exploring interactions with the many herbs that are increasingly accepted as having medicinal properties. Green tea is out, likewise, but for different reasons: it delivers a massive dose of vitamin K in a fairly concentrated form. Cranberries* are out for a reason that lost me, other than they can inhibit the warfarin's effectiveness. I just know “no cranberries.” And, last but very certainly not least, extremely limited alcohol.

The others will be easy enough, but for a confirmed beer-hound like me, the last one gave me pause. Both my doctor and the Coag Nurse reinforced it to me, though: alcohol interferes with the liver’s processing of the warfarin and causes a buildup of the thinner in the blood, leading to blood so thin that lethal hemorrhages can occur. To that end, they put me on a strict ration of one beer a day.

That one hurt. I can live without cranberries, but I like my beers. I like them a lot. I miss it, even. I miss it like I would an old friend that I talked to regularly and honestly. However, if I ask myself “is this worth dieing for?” every time I get the urge to crack one open, the answer is pretty obvious: of course it’s not worth dieing for. Not right now, at least. I’m not ready.

I make light of this to a degree, but I understand the seriousness of blood clots. They can kill or cripple with the same capriciousness that they form. All that can be done is to make conditions as unfavorable for that to happen as possible. Thin the blood to prevent secondary clots and hope the original one stays in place as it dissolves away over time. It’s the standard, well-accepted course of treatment.

But it’s imprecise, part science and part art, as my coag nurse told me in our first meeting. After several visits, he and my doctor are still tweaking my medication dosage. And there are no guarantees: I could do everything I’m supposed to and still end up dead or severly disabled.

Although I know that the contemporary treatment is grounded in medical science, it feels a bit medieval, somehow akin to leeches and blood letting. I think over and over again that there must be some other more advanced treatment that simply gets rid of the clot instead plying it with potions. What’s next, I wonder sometimes: burying chicken bones and dancing naked under a full moon?

I know that’s not a fair or intelligent assessment, and one that I don’t really believe. It’s just the fear talking. It lives right beneath the glib face I put on every morning and take off when I’m home again, ready to boil to the surface like a blister at any time. The awareness of what could easily happen and the impotence to prevent it leaves me in a no man’s land between knowledge and fear.

Given that I can no longer feed my inner beer hound, I’ve taken comfort in tea. Since herbal and green teas are out, I’ve rediscovered the joy of old-fashioned iced tea. The kind my grandmother always had on hand to wash down the cake she always mysteriously produced, no matter what time or when I dropped by. The tea that she made extra strong and then poured hot over ice and added enough water to finish the dilution.

We drank tea, ate cake and talked under the giant trees that shaded her front yard. When I was in college and feeling stressed or anxious, her house was just a short drive from campus. A short distance, but one far enough to transport me from a hectic urban, academic world to the relative calm and serenity of an old farm house in the country surrounded by pastures and fields.

My tension and worries began to evaporate the second I turned off the highway down her long driveway. By the time I made it to the bottom of the hill, I could breathe. Crossing the creek and climbing the hill in front of me took on a symbolic meaning. When I pulled in next to Grandpa’s truck, I sometimes sat there a few minutes, absorbing the peace. Then she’d appear from nowhere, and I knew I’d be okay.

Granny was a strong, practical woman whose eyes twinkled behind her weathered face with its rosy cheeks. She always looked taller than she actually was. She seemed afraid of nothing and knew what was important and what wasn’t. She made me feel like I could be in charge of my life as I grew into a man.

So for now, I’ll do what I’m supposed to: take my pills, watch what I eat, refrain from strenuous physical activity and ration my beer. I’ll be alert for complications like internal bleeding and call 911 if symptoms (chest pains, dizziness or shortness of breath) warrant. All the while, I know it’s a gamble, and no matter how much the odds are stacked in my favor, I’m not much of a gambling man.

All I can do is take charge and try to make peace with the unknowns. And drink tea. Not that over-priced noxious stuff that comes in a bottle and barely resembles tea. Real, fresh-brewed homemade tea. I make it like Granny: strong, to be diluted. (She was right: it’s better that way.) And I even made a banana bread (the closest I’ll ever get to a cake). It doesn’t bring me peace, per se, but it reminds me of peace. I find a small modicum of comfort in that.

It’s what I have. Here’s to you, old girl. Bottoms up.

----------------------------------------

*For conflicting opinions about cranberries and warfarin, see this article from the Lance Armstrong Foundation's LiveStrong.org site and this one from the Cranberry Institute.

Help

As I have grown older, my perception of my role in the universe (or in my universe, at least) has solidified and become part of my self-identity, evolving from malleable clay into fired ceramic. In my mind, I am the “fixer”. I always have been to one degree or another, but over time, words and phrases like “right hand”, “go-to guy” and “care giver” have come to define me more and more. And I haven’t minded.

The role feeds a certain naccissistic appetite for control. It reinforces to me that I am needed. It gives me a role to play in the grander scheme of things. It makes me strong. It’s what I do.

I am not used to being looked after, taken care of or helped by other people. I fiercely resist any attempts by any one to do so. I am independent. I can take care of myself.

That’s what I dreaded about surgery more than anything else: I was going to have to let people take care of me. And that was before I realized what the scope of my need would be. That the “procedures” weren’t going to be a single “procedure” and were going to be more complex and invasive than I was prepared for.

From the morning of the surgery, I had to let others help me. I could have taken a cab to the hospital, but a friend offered to drive me, and I let her. As we navigated the pre-dawn streets, I admitted to her that I was nervous—scared, even. She told me it was okay to be scared. That it was not a sign of weakness but of good sense.

At the hospital, I checked in, paid them and was shown to an austere pre-op room. As I changed from my real-people clothes into a paper surgical gown, I became acutely aware that, from that point on, other people were going to be taking care of me. I was temporarily ceding control to a group of people whom, save my surgeon, I had never met before. That I was depending on them to take care of me.

The operating room was cold, sterile and scary. “It looks like something from a science fiction movie where humans are adbucted by aliens,” I remarked. That was all I remember until I woke up in the recovery room several hours later.

I tried to sit up, but I couldn’t. I tried to move my legs. The right one wasn’t budging. “What if there’s a fire?” I thought. “How will I get out?”

“How do you feel?” a somewhat disembodied male voice asked.

“Awful. Like a car wreck. And I’m the car.”

As I got my bearings, the voice slowly materialized into a nurse standing by my bed. “At least I got a cute nurse,” I thought. Or at least hope I only thought. If I said it out loud, he didn’t seem to mind. He’s probably seen and heard it all.

That was when the real neediness began. I was parched, so Gerome (the cute nurse) put crushed ice in my mouth. What in another setting could have been a sexually-charged action meant nothing to me except helping to slake my thirst. And when he thought it was okay for me to have water, I couldn’t hold the cup. He held it for me, and I drank through a straw. I had temporarily lost the will the be a dirty old man.

Then I needed to pee, so he brought me one of those plastic hospital pee bottles and pulled the curtains. But I couldn’t get things positioned right, so he had to put my penis into the mouth of the receptacle until I could hold it in myself. Although he did so matter-of-factly, I was embarassed to accept such intimate help from a total stranger, no matter how cute.

And I said so. “Don’t worry about it. That’s what I’m here for. To help you in whatever way you need,” he replied. “You’re a lot less trouble that some of the people who come through here.”

I had never felt so helpless in my life. The tables were turned: I was no longer the fixer or caregiver. I was the one being cared for and attended to. And I couldn’t quite reconcile that role reversal in my mind.

The next 24 hours or so became a study in how to ask for and accept help, as well as accept and be grateful for help I hadn’t asked for. Like the friend who had been there to talk to the doctor after surgery and had called people to let them know I was out of the OR and that things had gone well.

Or the orderly who cleaned me up after my late lunch came roaring back up in a Linda Blair moment. Or the medical assistants who arranged my pillows, brought me water and ice and emptied my pee bottle.

Or the nurses who calmed my fears because I couldn’t keep food down. “It’s not that unusual,” they told me again and again. “Some people react that way to anesthesia. It’ll pass.”

Or my sister, who spent the evening with me in my room getting things for me that I couldn’t reach, fixing the tv and letting me use her netbook to get some basic emailing done.

By the time I was released, I gladly accepted being pushed outside in a wheelchair. I had given in to the reality that I had to accept help some times, whether I asked for it or wanted it or not. I was not comfortable playing the role, but I realized that my psychological hangups would, on occasion, have to subordinate themselves to my practical needs.

Leaving the hospital, I accepted one final offer of help: a ride home. Home, the place where I was in charge, independent and self-sufficient. Even though I now realized that those notions of control were mere illusions, I was ready to return to the role I knew.

I Will Survive

Tomorrow's the big day: I have to be at the hospital at 5 a.m. for 7 a.m. surgery. Part of me is relieved that it's finally here, and part of me is scared to death. I'm happy that I might soon be able to live without the pain, but I'm afraid of how I'll be able to take care of myself.

I'll probably be on crutches for a while, and I don't know how one carries anything on crutches. How will I get food out of the oven or microwave? How will I water the plants? How will I feed the cats?

When I woke up this morning, it all hit me, and I freaked out. All of the unknowns came crashing down on me. I've been trying to plan and take care of things in advance, but I suddenly realized how many things I hadn't anticipated and had no plans to deal with. I didn't think I could even possibly get them done.

I took care of work once I calmed down some. I think it's taken care of well enough. I have my rides to and from the hospital confirmed, and a baby sitter, as well. I have food stockpiled and medications refilled. Laundry's done. Rent is paid.

Now all I have to do is show up. I don't really know what I'm worrying about, but I've had an impending sense of doom for a while. I guess I know all the things that could go wrong.

My greatest fear is that the surgery will not provide any tangible relief from on-going pain. I can't say for a fact that it will help me in any way. It could hurt me.

I have faith in my physician, though. It may be misplaced, but I don't think so. He's been practicing since I was a kid. And he left surgery as a last resort. It was me that told him that it was time. That I was so tired of living in pain that I'd gladly face that option.

I'm scared. I'll admit that readily. I haven't had surgery since my tonsils came out when I was 5. 40 years ago. This is new, uncharted territory for me.

I'll push through it, though. I see a physical therapist in my future. And I already know his name.

In the end, I'll be okay. I won't let nerves get the better part of me. I will survive.