Clearing the Air: No. 7 (D-Day)

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.

***

My first recollections after crawling out from under the thick wall of anaesthesia are of two hospital employees talking about my case as I peered up from my bed to their workstations. I knew they were talking about me because, although I didn’t catch my name, I did hear other identifying information. One of them mentioned that a doctor had said “no” to my case, but I reckoned in my mind that others on the team were persuasive in giving the transplant the green light; or, it could have been that the doctor said “no” to the donor organ. I couldn’t tell in my bleary-eyed state. At some point after, one of these same two staff members said that I needed to try to cough and get some of the mucous up; he implied that this was dire in that early stage of recovery; that I might not make it if I didn’t. Or, given the continued sedation, wild early side effects of anti-rejection medicine and trauma associated with such an invasive procedure, perhaps none of that dialogue happened at all.

Another memory from the intensive care unit: When consciousness began to unfold, I noticed that the new lungs were extremely tight, and in my mind’s eye, I pictured a narrow rectangle above my head, representing the limited range of my breathing capacity, that was surrounded by amorphous shapes or clouds. This was a panicky time during the recovery process because I, indeed, felt a continuous need to cough up a lot of mucous but at the same time, I either wasn’t strong enough or the pain from the surgery was too sharp to make this possible.

Memory three: I came out of the operating room with about five chest tubes that were supposed to catch excess air and fluid coming from the lungs, so I remember a young UPMC fellow huddled over my chest hurriedly trying to undue one of these tubes while I was still under some sedation. He got one off and started on a second, but apparently my tolerance for grinding metal against skin had reached its limit, and when I began to call out in pain, he threw up his arms and said, “We’re done!”

And then came the victory lap. I was still drugged as hell at this point, but at the coaxing of a physician’s assistant in the ICU, I was able to get on my feet, with four chest tubes still in toe, I slowly walked some small distance. I guess I have four months of pulmonary rehab to thank for that ability. I could have heard clapping during this walk, but I really can’t remember. Emotionally, I felt little at this early stage. I was too numb.

lungs_small_by_jeanfan-d5yvgqc

The morning of January 31 had already gotten off to an unusual start. It was 8:30 a.m. on a Tuesday and a new coat of snow had covered the ground and road, such that the snow plows either hadn’t come or had been in effectual at clearing the apartment roadway. This was the most snow we had gotten on the road up until this point in the season, and knowing that I hadn’t missed any pulmonary rehab appointments since joining the program in September, I thought I was justified in taking a day off rather than trying to break my neck and brave the elements. I only learned this later, but when I called in to the rehab clinic, my therapist put me on hold to consult with my lung transplant coordinator who was, unbeknownst to me, on the other line at the same time. Minutes after telling my therapist that I was snowed in, my coordinator called and said they had a potential transplant offer for me. I was instructed go into nil per os mode (NPO, or no eating or drinking) and hang tight until further word.

Unfortunately, I had gotten into the habit of only having coffee before rehab because I tended to breathe better and had better oxygen saturation levels without a bunch of food on my stomach, so when I got the initial call, I was already NPO from the night before. In any case, the coordinator said rather than waiting around at the hospital, I could just stay at home until doctors had more information about the possible match. I called to check on my case at 2 p.m. and was told to have a light lunch — I had a Hot Pocket, which is the last bit of solid food I have eaten since that day — but to remain NPO from that point forward.

Later that evening, I was called to the hospital, got checked in and went through the usual array of routine tests — X-ray, EKG, vials and vials of blood work — before making it down to the pre-operational area feet away from the operating room. Right before one knows whether the operation is going to happen for real or not, hospital personnel give a full rundown of the transplant process and convey information about the various contraptions that may or may not be needed for the operation to be a success. In my case, because the pulmonary hypertension was so high, a special heart machine needed to be deployed. At some point during this extra hour of waiting, one of the doctors told my parents and I that a female patient had been called and sent back home from the hospital 19 times before getting the final green light on her operation. My dad asked hypothetically whether I could handle going through that process that many times. At the time, I said, reluctantly, that I didn’t know, but having thought about it further and having only suffered the stinging disappointment of being turned away twice, I’m still not sure that I could have.

That said, after an hour, I was finally called back to the operating room just at 2 a.m. the next day. The last thing I remember saying to the medical assistant as I was carted in the cold, cavernous place, taking a quick pan around the room as numerous cloaked people wrestled with tubes and wires: “Well, this is intimidating.”

***

I have already described the initial feeling of waking up from the transplant as panicky. I felt like I was being forced to breathe through an even a smaller straw than the one I had with lung disease. I was congested and wasn’t strong enough to cough up the mucous, and even if I was, it hurt too much to do so. Luckily, this stage of the process passed fairly quickly as my lungs began to open up little by little. The Thursday and Friday after the transplant are more or less a blur. I began to come to my senses a little on Saturday, but I would remain on heavy pain killers for the next several days. The main life goals of a transplant patient at this early stage seem to be to try to walk down the hospital halls once or twice a day and blow into the cucumber (air resistance device) and air incentive spirometer as many times as possible to help expand the alveoli sacs inside the lungs. Other than that, my days since getting transported from the ICU to my main hospital room on the ninth floor of UPMC Presbyterian have generally looked something like this:

  • 4-6 a.m.: X-ray inside room
  • 6 a.m.: Blood work
  • 7-9 a.m.: Breathing treatment
  • 8-10 a.m.: Medicine dispensing, check-in from nurse
  • 9-11 a.m.: Various visits from doctors, nurses and physician’s assistants from the lung transplant program and typically a walk down the halls.
  • 12-5 p.m.: Free time, sporadic visits from doctors, bath (if needed), etc. Since the first two weeks were largely spent in pain, mostly this free time for me has meant vegging out at the TV, sleeping or just staring at the bed and nodding off.
  • 7-9 p.m.: Second breathing treatment
  • 8-10 p.m.: Check-in with night shift nurse, medicine dispensing
  • Midnight: Final vital sign check.

As you can see, even if you can sleep in theory, you won’t sleep much with so many interruptions throughout the day and night, but it does make sense that people who are trying to recover from a major surgery need to be engaged and active in the process and not just left to occupy their own little corner of their room for 12 hours or more a day.

***

Let me back up. I need to describe the experience of breathing with the new lungs. As I said, I was a little out of it the first time hospital staff got me to my feet to walk in the ICU, but when I got the semi-permanent room on the ninth floor, therapists took me for a walk or two every day. The first walk on the ninth floor without oxygen felt like a true triumph. COPD is a slow, degenerative disease, so I didn’t always feel like I was breathing through a straw; I remember a time, sick as I was, when I could still pass a fair amount of oxygen through my lungs. I could still remember what it was like to walk for yards along the beach without feeling breathless; to take short hikes through the woods; to bowl; to toss the football around with friends; to shoot hoops; to set up my own musical equipment and play open mic night on the guitar. But in the last 10 years, and certainly the last five, those memories have been fleeting as my pace without oxygen has steadily declined, such that simply walking to the back of a department or grocery store took real effort.

Although I was still hampered by those chest tubes, the experience of freely passing air in and out of my lungs — physically feeling the increased volume — was like no other after being penned for so long inside my own respiratory prison.

***

The last three weeks haven’t been without setbacks though. The next week after the transplant, I developed a minor infection that had to be treated with a round of antibiotics. This was disheartening at first because by that time, through breathing exercises and walking, my respiration was steadily increasing and my oxygen saturation levels were hanging in the normal 97-100 percent range. I was surprised by how quickly these metrics changed when I got sick, as my chest suddenly got tight, my O2 saturation dropped into the low 90s at rest and I was getting tired just getting out of bed and going to the portable toilet. I suppose this speaks to the relative fragility of newly transplanted lungs. As I understand it, they are supposed to get stronger over time. In any case, thanks to a quickly scheduled bronchoscopy, doctors were able to clear out a lot of mucous and identify the specific illness that was attacking my system. After they started antibiotics, I began to feel better and get back to normal.

Perhaps the most difficult thing with which to deal throughout this whole process was, not the transplant itself, but proper implementation of a simple feeding tube. As a matter of convenience, doctors decided to add the tube in my stomach during the bronchoscopy procedure so I wouldn’t have to go to the OR for two routine procedures on different days. The feeding tube was, and is, necessary, because as I may have mentioned elsewhere, I have an abnormality called achalasia, which means that the esophagus does not properly move food down the throat into the stomach. Also, I can’t swallow pills, so doctors planned to install a feeding tube as a workaround and to keep my nutrients up during a prolonged NPO period.

The first feeding tube began leaking gastric fluids, possibly stool, right out of the gate, and the problem only seemed to get worse when the feeding tube was on. My transplant doctors wanted me to ideally have what is known as a combination G and J feeding tube, with the G section going into the stomach and the J tube emptying into the small intestines. I would be given food through the latter portion and only receive medicine through the G tube. Doctors wanted me to be fed through the deeper J tube because that presented a decreased risk of aspirating contents back into the new lungs. However, the surgeon charged with fixing the original, leaky feeding tube only put in a G tube and not the combination, so all contents, including food, would have been going right into my stomach. A smaller J tube was supposed to be installed inside the G tube in the interventional radiology lab, but the hospital did not have a small enough size. That trip to the IR being a waste of time, I was sent back a couple days later, and the doctor just removed the G portion of the original feeding tube and installed a J tube, which is what I have now. The smaller tube comes with an increased risk of blockage, but surgeons insisted that the tube needs to stay in at least a couple weeks, so the plan now is for me to go home with this tube in place.

In addition to the revolving door hell of being carted from the OR to the IR several times over the course of two weeks, the real headache in all of this has been the physical pain. Indeed, trying to recover from the initial surgical work after the first feeding tube was far worse that anything I experienced from the lung transplant — even worse that those chest tubes — and because of that, I have been on fairly high doses of oxycodone and Tylenol since the first feeding tube was implemented. The good news now is that the wounds are starting to heal up, and the pain is beginning to wane, and since doctors are just going to leave the current tube alone for the moment, I will have extra time to heal before they decide whether to add an extra access of point or just take it out altogether in a couple weeks.

***

The lung transplant was three weeks ago today, and from a breathing standpoint, I haven’t felt this healthy in at least 10-15 years. My doctors tell me this is just the beginning, that the lungs should continue to improve as I use them on a daily basis, with peak performance typically coming one or two years after transplant. As it currently stands, I am sitting here writing this on room air at 100 percent oxygen saturation and feel no breathlessness walking the halls of the hospital, whereas before the transplant, I averaged 93-96 percent sitting completely still, and the percentage would plummet the moment I began exerting myself with any activity from walking to the car or tying my shoes.

The best news that I have received since coming to the hospital came yesterday. Results from my lung biopsy showed no rejections from the new lungs (90 percent of lung transplant patients have some kind of rejection), and as such, I could be discharged as early as Friday or Saturday if all goes well.

All of this is incredible, of course. The skeptical, or realistic, side of me actually wondered whether it would ever happen or not. I wasn’t convinced, but remained hopeful in the midst of more than a few despairing nights, of windswept snow and the barren dawn and endless cycles of waking and dreaming that perhaps my time would come — and it did, and for that, I feel extremely fortunate and grateful. I guess that’s all I needed. That, and no shortage of support from my parents and family and good friends, all of whom convinced me, even if they don’t know it, to keep going and to fight for everything, for all that is, for love, for truth and beauty, for beauty and truth.

***

Next time, I will offer more insight into what the transplant actually means to me, and I will discuss perhaps the most important person in this whole process — the donor.

Read more: Clearing the Air: Nos. 1, 2, 3, 4, 5, 6.

[Artwork credit: “Lungs” by DeviantArt user JeanFan.]

Clearing the Air: No. 6

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.

***

Since arriving in the Pittsburgh area late last summer to get prepared for a double lung transplant and through those interminably long and portentousness days and nights of fall and winter — full up with hope, restless and boredom largely pent away inside myself — the waiting process was beginning to weigh on me as the holidays passed and one year bled into another.

Before Christmas, I learned that a doctor who was crucial to the lung-and-bone-marrow-transplant timelime was going to be away for 10 days and would not be back to town until Jan. 3, so I was taken off the transplant list temporarily, which gave me the chance to check on my place in Tennessee and see family and friends over Christmas and New Year’s. Even so, given my precarious health predicament at the time, I thought I could have ill-afforded to lose the 10 days off the list, but lose them I did.

Then came the second call to the hospital Jan. 6 when I again received notice that the night’s proceedings would not end with a date with my own destiny, but with a trip back home out into the darkness. After sitting around at the hospital most of the day and then well into the night, my parents and I, occupying a small station inside the pre-operational area of University of Pittsburgh Medical Center Presbyterian and surrounded by dangling wires and silent machines, a young fellow at UPMC had the unfortunate task of informing us that the potential donor lungs could not be transplanted because they contained pneumonia and some kind of mass.

Even though I was a little anxious to go under the knife at any time, as most sane people would be, this rejection was a big disappointment because I knew, as I mentioned elsewhere, the clock was ticking on my current medical state. I had been diagnosed with severe pulmonary hypertension a full 1 1/2 years before this night, and hearts can only handle the pressure for so long before they simply wear out. Once heart failure develops, a patient’s life expectancy greatly diminishes, and since more than two months had passed between this night and my last call back in October, I was concerned that time was increasingly not on my side if several more weeks or months had passed without finding a potential match.

But three weeks later, the sky above did break …

Read more: Clearing the Air: Nos. 1, 2, 3, 4, 5.

Clearing the Air: No. 5

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.

***

Twenty days and 20 nights have passed since the last time I sat down to write an entry in this series, and in that time, a lot has happened — most of it hastening the process by which I may soon finally find myself carted away to the operating room.

I waxed philosophical, as I am wont to do, quite a bit in the previous post, so this time I will try to be a little more to the point. My doctors at the University of Pittsburgh Medical Center submitted a series of appeals to my insurance company in an attempt to get me approved for a bone marrow transplant that is supposed to take place a couple months after I receive the new lungs. The bone marrow transplant is crucial to the entire plan because without the bone marrow transplant component, I don’t qualify for the lung transplant at all for the simple fact that my current immune system, compromised as it is, will not respond well to the battery of immune suppression medicine that I will have to take post-transplant in order to prevent an organ rejection. So, doctors are seeking to do the bone marrow transplant fairly quickly after I receive the lungs and am more or less recovered.

hospital

In short, a previous appeal was denied because the insurance company said the policy only covered bone marrow transplants for terminal cancer patients. I obviously don’t have terminal cancer, so that appeal failed. In a subsequent, expedited appeal — expedited because of the sensitive and timely nature of my particular case — new or modified language was “uncovered” that allowed for BMTs in the case of terminal cancer patients or those with other critical conditions. Thus, my doctors won the appeal, and I was added back to the list Oct. 17 after being deactivated for a couple weeks.

In the meantime, I have been undergoing pulmonary rehabilitation three times per week (Tuesday, Thursday and Friday) at UPMC and have been working to build more tolerance each week. The details are boring as hell, but suffice it to say my workout times are increasing and my oxygen saturation levels have actually gotten a little better since starting the regimen, so that seems to be a good sign. The goal is to just make sure I’m in good enough shape that I am able to get out of bed and begin walking around a little after the transplant. As I understand it, at some point after the immediate recovery period of three to five days in the ICU, I will reenter the same rehab program, this time with the goal of making me stronger and more physically ready to step back out into the world with the new lungs.

I unexpectedly received my first call for a transplant last Thursday about 11:45 p.m. as I was in the middle of a conversation with my friend, Kim. When I looked down and saw the Pittsburgh area code and a number that looked like it was coming from the hospital, I was, of course, in shock for split second before I picked up the phone. The nurse on the other end said the hospital was prepared to offer me a lung transplant and to get to the facility as quickly as possible. When I hung up the phone, I told Kim, “Oh my god. I just got a call to come to the hospital now,” to which, she replied simply with a stunned

I then finished up what I had to say to her in that moment and began to get ready.

My parents and I set off in the rain and got to the hospital as quick as possible. After a waiting period in the ER lobby, I was taken to a room on the ninth floor, where I underwent a quick and successive series of tests, including a lot of blood work, an X-ray and an electrocardiogram. After this, a physician’s assistant came in and told me what was going to happen next. During talks with doctors before being added to the list, I chose an option by which the new lungs, before being transported to Pittsburgh, would go to Maryland (I think) to be tested on a machine to ensure they were working properly. I knew this would add a few hours to the waiting process, but I thought it would be an important fail-safe. After the series of test, we were told that the doctors’ goal was to have me in the operating room by 7 a.m. assuming the lungs were in good shape and could be transplanted. The hang of it is that I would have been put to sleep before knowing for sure whether or not the surgery was actually going to happen.

Because doctors plan to use cells from the lung donor in the subsequent bone marrow transplant, the bone marrow has to match as well, so about 6 a.m., the PA came in and told us that the bone marrow was not a close enough match to make it feasible to go forward with the transplant. We were sent home that morning. Later that day, I learned from my hospital case manager that the lungs were not of high enough quality to transplant anyway, so this is what they call a “dry run.” My case manager made it a point to tell me multiple that these “dry runs” happen fairly frequently because right before the transplant takes place, the lungs have to checked one last time to ensure viability, and that can’t take place until the patient is on-site and completely ready to enter the operating room. So, the news, a letdown though it was, was not a surprise.

Needless to say, last Thursday night was a surreal experience, perhaps made even more so by the fact that I didn’t sleep at all until I got back home, surmising that if the transplant went forward, I would have all the sleep I would need and then some. That, and the fact that, up until about 5:30 a.m., I was too wired and consumed by own thoughts to attempt sleep.

Kim stayed up and talked with me through almost the whole night, from the car ride to the hospital in those first few anxious moments, in between all those tests and up until I decided, unsuccessfully, to try to get some shut-eye. And so, in those dim hours as I was waiting high above the city, we talked from about 2:40 a.m. until 5 a.m. and covered a lot of ground about the state of my current life, what I might hope to achieve after a successful transplant and what life could be like on the other side of the precipice. Mostly, the long conversation, just one of too many to name these last few weeks, helped me to remain positive, not just about the surgery itself, but about my future.

My physical therapist asked me earlier today if I was frightening that night, having been called for my first potential transplant, which, as everyone knows, is one of the most invasive surgeries, if not the most invasive, a person can undergo and more than a little risky. I wouldn’t describe what I felt as fear; I was, and still am, confident that I will get through the surgery and confident in the doctors’ abilities to get me through it. I was certainly anxious most of the time that night, and as I told Kim, I used the half hour between 5-5:30 a.m. as a time to gather my thoughts and come to terms with what might be about to happen; that is, being put to sleep for most of the day, undergoing a serious surgery and not knowing whether I was going to wake up at all, much less wake up in better or worse shape.

In any case, until next time, I remain in the struggle and the struggle remains in me.

Tomorrow, I will be going in to receive a dose of Rituximab, an antibody that is used to deplete B cells in certain patients, which is a step geared to prepare me, not only for the lung transplant, but for the bone marrow procedure. As I understand it, a depletion of B cells decreases the likelihood for a rejection of the new lungs, and of course, as I said, the full BMT will be quick to follow after the lung surgery. When that times comes, my current immune system will essentially be wiped clean by a small dose of chemotherapy and radiation and be supplanted with cells from the donor of the lung.

It is a sound plan … in theory. We will see how it pans out in practice.

[Artwork credit: “Hospital” by DeviantArt user FarDareisMai.]

Clearing the Air: No. 4

The notorious stage theory of Elisabeth Kübler-Ross, whereby one progresses from denial to rage through bargaining to depression and the eventual bliss of “acceptance,” hasn’t so far had much application in my case. In one way, I suppose, I have been “in denial” for some time, knowingly burning the candle at both ends and finding that it often gives a lovely light. But for precisely that reason, I can’t see myself smiting my brow with shock or hear myself whining about how it’s all so unfair: I have been taunting the Reaper into taking a free scythe in my direction and have now succumbed to something so predictable and banal that it bores even me. Rage would be beside the point for the same reason. — Christopher Hitchens, “Topic of Cancer,” Vanity Fair, August 2010

***

Christopher Hitchens has said, upon contemplating his own medical predicament in the above piece and in interviews, that having cancer was nothing like a “battle,” as most people politely frame the discussion when the grim news comes around. There is no battle, he said. “You feel as if you’re drowning in powerlessness,” he said, and elsewhere, “I’m not fighting or battling the cancer. It’s fighting me.”

As for myself, I wasn’t as far along into respiratory degeneration as I am now when the Reaper turned his wintry stare on Hitch six years ago — and in the process, cut down one of the preeminent thinkers of our time and one of the greatest writers of any time — but I think I knew, even then, what he was ultimately implying, even if he didn’t come right out and say it. Outside of extreme intervention — aggressive chemotherapy, bypass heart surgery and organ transplantation — human beings usually can’t come back from the brink when faced with certain forms of cancer, obstructed arteries or lung disease. And fortunate as we are to live in an era of research and discovery, without modern medicine and science, we, as a species, would be left exactly where we started: trembling before the stars and wondering, in our own baffled ignorance, what capricious god we must have angered to be stricken with all sorts of maladies — a weak heart, bad sight, a wobbly gait — to send us to our unceremonious graves. In many cases, then, cancer isn’t a battle so much as it is a civil war; a person’s own cells, metastasizing and turning against them in an unwinnable, merciless onslaught. It’s Pickett’s charge without the bayonets and the ensuing inevitability of surrender. That’s certainly what cancer is without medicine, and that’s sometimes what it is with chemotherapy, which Hitchens preferred to call “venom.” With cancer, then, there are a few winners, no shortage of brave fighters and unfortunately, a disproportionate number of losers.

The struggle

Hitchens, as do I, preferred the analogy of the struggle when thinking about chronic illness. Readers, or people who know me personally, will no doubt know by now that I draw a lot of inspiration from “The Myth of Sisyphus” essay by Albert Camus and the tale of a man who, after daring to trick one of the gods, was ordered to heave a rock up a mountain, only to have it roll back down to the bottom and to repeat the process endlessly. It is in this essay and in the imagery of Sisyphus’ seemingly “futile and hopeless labor” that we see one of the most profound illustrations of struggle and perseverance.

sisyphus_by_ahermin

Camus invites us to imagine the sweat and toil Sisyphus mustered to get the boulder up the mighty slope just one time and then, as with all other subsequent ascensions, he watched as the rock inevitably crept back down the mountain. At the summit, Sisyphus turns and prepares to meet his fate once again.

Camus calls this brief interlude — “that pause” — Sisyphus’ “hour of consciousness” constituting mankind’s singular point of triumph:

At each of those moments when he leaves the heights and gradually sinks toward the lairs of the gods, he is superior to his fate. He is stronger than his rock. … If this myth is tragic, that is because its hero is conscious. Where would his torture be, indeed, if at every step the hope of succeeding upheld him? The workman of today works everyday in his life at the same tasks, and his fate is no less absurd. But it is tragic only at the rare moments when it becomes conscious. Sisyphus, proletarian of the gods, powerless and rebellious, knows the whole extent of his wretched condition: it is what he thinks of during his descent. The lucidity that was to constitute his torture at the same time crowns his victory. There is no fate that can not be surmounted by scorn.

Sisyphus, then, becomes what Camus calls an “absurd hero,” who relishes in what it means to be alive, spurns death and defeat and goes about the only things that he now knows: self-preservation and his rock. Thus like Oedipus, Sisyphus and modern man must eventually conclude, “Despite so many ordeals, my advanced age and the nobility of my soul make me conclude that all is well”:

I leave Sisyphus at the foot of the mountain! One always finds one’s burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night filled mountain, in itself forms a world. The struggle itself toward the heights is enough to fill a man’s heart. One must imagine Sisyphus happy.

Unlike Oedipus, Sisyphus is not a tragic figure, but a person who perseveres and finds purpose, and possibly even contentment, in circumstances that, on the surface, seem to offer little. He finds wonder in each atom of that rock; he marvels at life in the void of night. The lesson is poignant because it teaches us to appreciate life, to carve out a little corner of happiness and enjoyment for ourselves, regardless of the circumstances. Or, as Milton said, to “possess a Paradise within thee, happier farr.”

Indeed, in order to weather the inevitable battery of tragedies that could befall us at any given time, one must imagine what life would be like during a worst case scenario, and we should emotionally prepare ourselves for it because before I get to the end of this paragraph, someone, somewhere, is indeed approaching the precipice and lowering their eyes on the darkness. None of us are all that far away from the edge, from the worst of things, as we might like to imagine.

And so, realistic hopefulness is where you find me here amid the struggle — the creeping ascent, an upward gaze, a cloudbreak before the retreating fall and a turn toward the heights in the gathering dust.

Philosophical musings notwithstanding, the physical analogies I draw from Sisyphus should, by now, be obvious. The process of breathing with COPD is like walking up a steep hill all the time or holding your breath too long in the deep end of the pool. It’s a slow and inevitable march that will catch up with me sooner or later without a transplant. That’s not resignation; it’s just basic medicine, and so, realistic hopefulness is where you find me here amid the struggle — the creeping ascent, an upward gaze, a cloudbreak before the retreating fall and a turn toward the heights in the gathering dust.

The middle

I said in the last post that I would cover some of the other complications that have made getting on the list and on the operating table a tough sell. In addition to an irregular immune system, I also have what is known as achalasia, which, compared with these other health issues, is actually pretty common. It simply means that the esophagus does not carry food down the throat to the stomach as well as it should. As such, food sometimes gets lodged down the gullet, and in bad cases, patients have to regurgitate and just hope the passageway opens back up on its own. So far as I know, I have had this since I was a child, and I have had to eat slowly and at a measured pace ever since.

A person with this condition doesn’t have to swallow food whole in order for substances to get stuck. Some foods, like rice, pasta, chicken and steak, require lots of chewing, and even then, if you eat too fast, they will get stuck. Since I have lived with this for the better part of three decades, I usually don’t throw up anymore. I know what foods tend to get stuck and eat and drink accordingly.

It’s hard for me to describe what it feels like when food does get stuck. Most people will be familiar with the experience of drinking a cold swallow of water and feeling it go down their throats. If the esophagus is closed, even water doesn’t go down, so if you keep drinking or eating after the problem occurs, it feels like fluid and food is building up in the middle of your throat. If it doesn’t “clear” on its own, there’s nowhere for it go but up. Once enough food and liquid start to build up, patients tend to feel a lot of pressure until eventually, it just feels better to throw up than to continue to hold it down. In the past, I have been able to hold it long enough where it did clear on its own, but that’s a far from pleasant experience. The best of all options, of course, is to eat slowly and don’t get sick in the first place because once a person throws up the first time, it usually takes longer for the esophagus to go back to its normal state. In previous episodes, I have spent the better part of a day waiting for the damn thing to open back up. Pretty disgusting, huh?

Doctors have a few treatments for this, including muscle relaxers, a rather routine surgery called an esophageal dilation and a more complicated procedure known as a heller myotomy. I have had numerous dilations, and if I move forward with a lung transplant, at some point after the operation, doctors will want to perform a myotomy to mitigate the issue.

The complication, as it relates to the lung transplant, is that achalasia patients usually also have problems with acid reflux and aspiration, which means, because the esophageal muscles don’t function properly, materials from the stomach can come back up into the throat and damage the lungs. As I said earlier, doctors don’t seem to know for sure, but this could have been what contributed to some or all of the initial lung damage in the first place, and this is why Duke did not approve me for the lung transplant, although they knew beforehand that I had achalasia.

In any case, the sequence of steps will be to first get me through the lung transplant, look at performing the myotomy a few weeks into the recovery period and then the bone marrow transplant two or three months after the lung transplant. The kick in the nuts about the swallowing problem is that I will not be allowed to eat or drink anything for four to eight weeks after the lung transplant and will get nutrients through a feeding tube. I have assured doctors that I have the wherewithal to sustain this exercise in mental endurance. We will see if I actually do. Not eating is one thing; not drowning myself in coffee every day will be another one altogether.

***

I’m not sure yet what I will write about next, as I have been fairly restless the last several days. My parents and I have since left the Family House in the medical district of Pittsburgh and am currently living in an apartment in a place called Wexford. I sustained what hopefully will be a minor setback regarding insurance. While the lung transplant itself was covered, the bone marrow transplant has yet to be approved. The two procedures go together. Because of the aforementioned complications, I don’t qualify for new lungs without the bone marrow transplant. My case manager at the hospital was under the impression that the bone marrow procedure would be covered through a research grant, and it may well be, but at this preliminary juncture, the insurance has to be approved before we can move forward. As such, I was made inactive on the transplant list temporarily until funding is approved for the bone marrow transplant. I am hoping for a resolution this week.

[Artwork credit: “Sisyphus” by DeviantArt user ahermin.]

Clearing the Air: No. 3

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.

***

Lest it appear that my last post was nothing short of a whole-cloth evisceration of all private health insurance companies everywhere, I do have more information to share that may balance the scales a little. Obviously, I did get another evaluation and did get approved for a transplant, or else I would not be sitting here looking out over UPMC at this moment. But more on all that later.

But first, let me say a word about customer service. In dealing with my company’s insurance carrier, UMR, I was almost solely in communication with one person — the transplant case manager. As we all know, the robotically trained peons who answer the phone at any insurance company’s 800 number are, by and large, utterly useless. Case managers, then, are supposed to be more skillfully trained in being able to answer complicated questions, and my particular case was about as complicated as it gets. Even so, the failures were many.

corporate_lobby

Here is what I tried to explain for weeks and months during the previously referenced appeals process: I didn’t know that my insurance company even had a limit on the number of medical evaluations a potential transplant recipient could receive until I had already reached the mark. There is nothing special about a transplant evaluation. All it is, is a weeklong series of tests and meetings with doctors and consultants to ascertain whether a patient can be accepted into the program. As such, I was under the impression that these appointments would, for insurance purposes, be treated like all other appointments. But no. Transplant evaluations are categorized differently because they can get quite costly, usually totaling $50,000 or more. Thus, from an insurance company’s perspective, if a patient is unhealthy enough to “fail” two evaluations, she is unlikely to be approved on the third try, so companies usually set the cap at two. So, while I wasn’t aware of the limit — technically, again from the insurance’s perspective, it was my fault for failing to find the pertinent language, plainly spelled out in black and white, on page 80-something of the voluminous policy — perhaps I could have been afforded a little slack in being solely concerned about getting access to health care rather than having an atomic-level knowledge of every nuanced detail in the document.

Although my insurance case manager knew that I was trying to get approved for a transplant, no one bothered to mention before I set up the second evaluation at Duke that the University of Pittsburgh Medical Center could become an in-network facility in a matter of weeks (see previous post) or that it was even being considered. Surely, this process doesn’t take place overnight. At the time, I was more confident than not that Duke would accept my case, so it’s not like I went there kicking and screaming, but had I known that UPMC was a possibility in the near future or if someone had told me about other in-network options like Cleveland Clinic or John Hopkins — both of which treat high-risk cases like myself — perhaps I would have waited. 1 As I have said, only after I used up the second evaluation did I learn that UPMC had become an in-network facility, which is what I tried to explain multiple times to my case manager who should have had my best interests at heart. I saw little evidence of it.

With the above information, I requested a narrow exemption given the particulars of my case, the severity of my condition and the requisite expediency. During the earlier, verbal part of my appeal, the case manager claimed she would take my case to her superior, but after that failed — who knows whether she actually did or not — I was told to write a letter and send it to some shady post office box address in Wisconsin. That was the second appeal. After that was rejected, I was told to send yet another one, and following the third fruitless endeavor, which included the aforementioned letter from myself and my doctor in New York, I was told I could then petition my secondary insurance for evaluation coverage. During all of their delays, belated return phone calls and long waiting periods between appeal responses, I lost at least five to six months, jerked along all the while, that could have been spent on a waiting list.

… It’s water off my back as long as I maintain the physical and mental ability to excoriate the idiocy and cold intractability of the system, plainly spelled out in black and white, as I am doing now.

The fire drives me on. I’m fairly young and have a strong constitution, and so, although all of this was certainly irritating and makes me think we should rip the insurance industry asunder and start anew, it’s water off my back as long as I maintain the physical and mental ability to excoriate the idiocy and cold intractability of the system, plainly spelled out in black and white, as I am doing now. But imagine the typical transplant patient: weak, infirm, emotionally drained. How much more difficult would it have been for them to go through this labyrinthine process only to get turned away with a few blithe keystrokes? How much more defeating to have gotten that far and have to start over?

Back to the story. Having thus exhausted all options to get coverage for a transplant evaluation with my company’s insurance carrier, I, along with a helpful case manager from my secondary carrier, who had more sympathy in her voice on the first phone call than I got with the other company in six months, began the process by which I am here today. Essentially, the medical director at the second insurance company discussed my case with the transplant director at UPMC and got the necessary approval for me to be seen, assuring the insurance director that the hospital in Pittsburgh had “different techniques” that could be deployed to mitigate my particular set of complications, of which, I will take up next time.

[Artwork credit: “Corporate Lobby” by DeviantArt user ianllanas.]

Clearing the Air: No. 2

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.

***

In a perfect society — hell, in any society such as ours claiming to toe the moral high ground — patients who, through no fault of their own, require an organ transplant or any other life-saving procedure should be put on the fast track to receiving swift and affordable access to health care. But not here in the United States of America, where we claim to be the best nation in the world, yet fall wide of the mark on a great many fronts, health care not the least of them.

Credit: "On The Other Hand" by DeviantArt user gilad.

Much like our justice system, when it comes to health care, we don’t put a premium on systems that are efficient, cost-effective and actually serve the best interests of those who need to heal and rehabilitate their lives; health care is a grossly for-profit venture that, even after the implementation of Obamacare, doesn’t go far enough in closing the loophole between those who qualify for Medicaid and disability and low- to middle-class working families who are just one medical disaster away from bankruptcy.

The similarities between our failures in health care and our failures in the criminal justice system deserve to be explored further. Consider the timeless words of Chris Rock on why we have yet to find a cure for HIV/AIDS and other terminal illnesses:

They ain’t curing AIDS because there ain’t no money in the cure; the money’s in the medicine. That’s how you get paid — on the comeback. That’s how a drug dealer makes his money — on the comeback. … You think they’re going to cure AIDS? They’re still mad at all the money they lost on polio. … Curing AIDS, shit that’s like Cadillac making a car that lasts for 50 years. And you know they can do it. … They got metal on the space shuttle that can go around the moon and withstand temperatures of up to 25,000 degrees; you mean to tell me you don’t think they can make an El Dorado where the … bumper don’t fall off? They can, but they won’t, so what they will do with AIDS is the same thing they do with everything else. They will figure out a way for you to live with it. Cause they don’t cure shit. They just patch it up. Get you to the next stop so they can get more of your money.

This is a comedy skit, so obviously it contains some hyperbole, but it also speaks to an important truth. It is true that we have largely eradicated, by way of vaccines, the likes of polio, the measles and chicken pox, but one would have thought in the year 1999 when Rock performed this famous stand-up routine, and certainly in 2016, we would have made more headway on things like childhood leukemia, Alzheimer’s disease, Parkinson’s, Lou Gehrig’s disease, diabetes, sickle cell anemia and many others. I won’t go so far as to entertain any conspiracy theories about researchers actively blocking potential cures for any of these illnesses, but it seems incontrovertible, and not even that controversial, to say that pharmaceutical companies and medical supply companies have more to gain from treatments than cures and that we, as a nation, have propped up a health care system, like criminal justice, that is perfectly content with throwing money at symptoms — and turning profits hand over fist — rather than tackling underlying causes, both medically and those in society at large.

The amount of money Americans pour into the health care industry each year is disturbing when compared with Canada and European nations. The United States spent $2.9 trillion on health care in 2013, which amounts to more than $9,000 per person. Are we getting positive returns on our investment? Hardly. According to the Commonwealth Fund, America was the highest spender on health care among 12 modernized nations, yet ranked last in life expectancy, and while we did well in mortality rates for cancer, we were at the top of the pile in obesity, infant mortality and chronic illness.

David Blumenthal, CF president, was on point here:

Time and again, we see evidence that the amount of money we spend on health care in this country is not gaining us comparable health benefits. We have to look at the root causes of this disconnect and invest our health care dollars in ways that will allow us to live longer while enjoying better health and greater productivity.

That will mean more education, an increased focus on preventative medicine and, of course, more health care reform.

This excerpt from Vox on the same topic is, perhaps, even more sobering:

If the health-care system were to break off from the United States and become its own economy, it would be the fifth-largest in the world. “It would be bigger than the United Kingdom or France and only behind the United States, China, Japan and Germany,” says David Blumenthal, executive director of the non-profit Commonwealth Fund.

Or here’s another way to put it in its (insane) perspective: The US, which has a mostly private health-care system, manages to spend more on its public health-care system than countries where the health-care system is almost entirely public. America’s government spends more, as a percentage of the economy, on public health care than Canada, the United Kingdom, Japan or Australia. And then it spends even more than that on private health care.

The result has been a health care system that has little accountability. Buoyed by free enterprise and in the absence of firm regulations on costs, pharmaceutical companies can literally charge whatever they want for medicine in America. For instance, Nexium was, at one time, $215 for a single prescription in the U.S., compared with $60 in Switzerland and $42 in England. Likewise, doctors offices and hospitals by and large have to pass along exorbitant fees to patients because they know, and they are quite right, that they may or may not get fully reimbursed by private insurance companies or the government, so they up their charges in hopes of getting back a certain percentage of the total. Many hospitals, of course, have to take all comers, including indigent patients, so fees increase over time to offset losses. Add to this unnecessary treatments, services and misdiagnoses, bloated administrative costs, fraud and other inefficiencies, and the unwieldy and broken nature of our health care system becomes self-evident.

To briefly turn now to the American justice system, whereas we should, again, be going after the underlying causes of crime, dereliction and drug abuse and working to keep more people out of jail, silly, nonviolent simple possession laws, a lack of robust addiction therapy options and the proliferation of for-profit “corrections” companies has created another failed system.

Here is what The New Yorker called a “chilling” memo from an ironically-named privatized prison outfit called Corrections Corporation of America:

Our growth is generally dependent upon our ability to obtain new contracts to develop and manage new correctional and detention facilities. … The demand for our facilities and services could be adversely affected by the relaxation of enforcement efforts, leniency in conviction and sentencing practices or through the decriminalization of certain activities that are currently proscribed by our criminal laws. For instance, any changes with respect to drugs and controlled substances or illegal immigration could affect the number of persons arrested, convicted, and sentenced, thereby potentially reducing demand for correctional facilities to house them.

Using the prisons as a profiteering venture is, to state the obvious, antithetical to the idea of “corrections” in the first place. Prisons and jails are supposed to be about the business of helping troubled people rehabilitate their lives; not turning their misery into monetary gain. Although private corrections companies might be the most high-profile example of this cynical and deleterious business, local police department and sheriff’s office certainly don’t get off scot-free and also stand to benefit financially from locking up and processing as many petty, nonviolent offenders as possible to get court fees to help bolster local budgets.

Using the prisons as a profiteering venture is, to state the obvious, antithetical to the idea of “corrections” in the first place.

The common thread in all of this is that individuals, whether in health care or the criminal justice system, tend to get lost somewhere in the monolith, and our health insurance system suffers from acute intractability when it comes to assessing the needs, not of “customers” who are identified only by their policy numbers, but patients as people.

After learning in the summer of 2012 that I needed a lung transplant, my local doctor, who said I should have begun the process “yesterday,” as he put it, referred me to Vanderbilt, and after getting turned down there, I attempted to get a transplant evaluation at the University of Pittsburgh Medical Center on the advice of my long-time physician in New York. But since the hospital was not in-network with UMR, my insurance company at the time, I was forced to get checked out at Duke, which, as I have already said, turned me down. This resulted in using up the second of my two evaluations allowed under my insurance plan.

So, if it’s not clear what happened here, I could have been where I am now two or three years ago — in other words, where I should have been all along — were it not for health care’s in-network and out-of-network provider system. It works in many cases, but in some instances, like mine, patients are not always matched with the right providers in a timely fashion. Weeks after Duke turned me down for a transplant, I learned that UPMC had finally become an in-network provider for my insurance carrier, but of course, it was too late at that point, as I had already used up my two evaluations.

Convinced that I needed to be seen at UPMC, I began an appeal process with my insurance company asking for an exemption to their policy to try to get a third evaluation. Or else, I would have to quit my job and got on disability.

Insurance companies and their representatives are professionals, if nothing else, at using any number of stall tactics and delays in hopes of patients either forgetting about their appeals, losing interest or just dying out, whichever comes first.

As such, I filed the first appeal sometime in the late summer of 2015, and weeks then turned into months as the year dissolved into the waning winter. In my last request, I even attached a lengthy, impassioned plea from my doctor in New York asking that I receive access to health care based on my case’s importance to medical history (as outlined in previous links).

After five or six months of calls, voice mails and letters, the blithe, dismissive, one sentence reply letter I received from UMR was, to put it mildly, an insulting affront to myself as a long-time “customer” and to humanity. Something is seriously wrong in a system that is so intractable and beholden to policy that there is no room for case-by-case exemptions — in other words, exemptions based on the individual needs of actual people.

We are, to them, it seems reasonable to conclude, little more than numbers lost in the monolith.

Next up: The ready and easy way?[Note]http://oll.libertyfund.org/titles/milton-the-ready-and-easy-way-to-establish-a-free-commonwealth[/note]

[Credit: “On The Other Hand” by DeviantArt user gilad.]

Clearing the Air: No. 1

The transplant chronicles of a journalist, bibliophile, epistemophiliac and homo sapien.

***

Now that I have taken a medical leave from my newspaper job in the Knoxville area and relocated to Pittsburgh, in hopes of getting a lung transplant at some point in the future, I thought this would be an interesting opportunity — or, if nothing else, a way to kill time — to record some of my unfiltered thoughts and observations as I go through this process in a way that might not have been possible in print. If you are reading about me here for the first time, you can get most of the background on what I am about to say from this newspaper column and from this post.

Credit: "Breathe" by DeviantArt user mesme8

Credit: “Breathe” by DeviantArt user mesme8

While the immediate aim of this blog series is to write down my ruminations in the days, weeks and months leading up to the transplant — and probably thereafter, if there is a thereafter — I will also roll back time a bit and reflect on what it has been like to deal with this illness through my teens, 20s and 30s — in other words, what should have been, and perhaps in an alternate universe, what would have been, the prime years of my life. But this is not, and I will not allow it to be, a sob story of loss and regret because believe you me, given the limitations, I have squeezed a hell of a lot of life out of 39 years.

To make a long story short for the benefit of those who already know the basic details, I was born with severe combined immunodeficiency and spent 3 1/2 years in a sterile hospital room in New York City, eventually undergoing an experimental mismatched bone marrow transplant in the early 1980s, which gave me a functional, if somewhat irregular, immune system. I developed COPD in subsequent years, and although doctors have some theories as to what might have damaged my lungs, no one seems to have any concrete answers.

When I was young, doctors simply thought I had asthma and would have to write me a “pass” so I would not be forced to run as much as other children during physical education classes. I was conclusively diagnosed with COPD in high school, and as such, I more or less knew that a lung transplant was coming at some point down the road, but I did not know the time or the place. Now, as I write this seven stories up at Family House University Place in the medical district near the University of Pittsburgh Medical Center, those two questions have been narrowed considerably.

I began breathing medicines shortly after the diagnosis, so even as I was getting ready to embark on new life trajectories after high school and again after college, my lung capacity was half or less than that of healthy human beings, so while the degeneration has been a glacial process over these two decades since graduating from high school, it has nonetheless been inevitable. Ironically enough, I began a career in sports writing in 2005, covering football, baseball, track and field and other activities that I could not have participated in myself. 1

After a short time in sports, I moved over to the news department and worked as a news editor for about nine years at publications in Northeast Georgia and East Tennessee and one year as a night editor in Upstate, South Carolina. Not until about five months into my most recent tenure at the newspaper in Tennessee, when a doctor said I needed to go on oxygen at night all the time, did I realize that the disease was starting to catch up with me.

In previous years while covering football and basketball games and other events, I would certainly have to take it slow at times walking up hills and climbing bleachers, etc., but other than the usual maintenance medications, I didn’t have any oxygen requirements until the summer of 2012 when I learned, through what is known as a sleep study, that my O2 saturation levels, unbeknownst to me, had been dropping into the low 80s at night. Any level below 88 percent can, over time, damage the heart and eventually lead to heart failure. Who knows how long before 2012 my nighttime O2 saturation level was dipping below this mark?

In any case, even though I wasn’t ordered to wear oxygen around the clock at this time, strapping on the tube before going to bed that hot summer night for the first time was, pardon the pun, deflating, and was the first step in the long and winding road that led me to the doors of UPMC.

Coming up in post No. 2: The insurance industry as an evil empire.

The Last Way Out

This fictional narrative is based on the real-life story of Jeremy Delle.

***

By Jeremy Styron

… By the time you get this letter I will have blown my head off, aka suicide, better known as (last way out). … I was just writing to see if you wanted to go to the funeral. … At least you didn’t have to hear the boom. — Jeremy Delle

***

They resembled specters swirling and then fading into the howling winter air. Tufts from her labored breaths followed behind as she carried her frame deep into the heart of the Rocky Oaks Cemetery just west of town.

Rainwater pushed through her plastic frames, darted her eyelashes and blurred her vision. She blinked, pulled at her coat, and then peered up the grassy knoll to the resting place of hundreds of once-living, laughing souls lying in wait for friends and relatives to visit. Entire lives here were reduced to fragments, a few words here and there, or at most, a sentence, in long-forgotten epitaphs.

“And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away. — Revelation 21:4,” was etched into one stone.

Sarah quickly made her way toward another.

Armies of drops exploded against the cold stone of another: “Against you I will fling myself, unvanquished and unyielding, O Death! — Virginia Woolf.”

And on his, only this: “O lost, and by the wind grieved, ghost, come back again.- Thomas Wolfe”

She cast her own round, petal bright eyes across the heavy air of the cemetery, the streetlights creating orange halos in the translucence, and then down to his now 12-month home. She crouched and ran her fingers over his soaked name and sounded out the letters.

She stayed with him 15 minutes before finally whispering:

“Silly Boy,” addressing Jeffrey by a school nickname, her tears mixed with those from above. “Where are you now, Jeff? You know how it goes, right? Remember? We used to sing this by the lake together.”

She would never forget the lyrics:

Pussy willow that smiled on this leaf. When I was alone, you promised the stone from your heart. My head kissed the ground. I was half the way down …

She paused, barely able to sound out the rest.

Won’t you miss me? Wouldn’t you miss me at all?

“Well, wherever you are, I hope you are happier than you were here. I’m sorry for all they didn’t do … for all we didn’t … for all I … But we had some good times, didn’t we, you and I?”

Her tiny mouth formed a half smile.

“Don’t you remember how we would ditch school and go down to the 7-Eleven on Campbell Street and get slushies? Anyway, I just wanted to come here tonight, one year after … well, you know … to wish you happy Valentine’s. It’s today, ya know? If you would have stuck around, I was planning to bring you a card after school. Did ya know that, Jeff? I just needed more … time. Bobby and I didn’t stay together long. But it’s over now. If you can hear this, just know that not everyone hated you. They maybe thought you were quiet or strange or whatever, but as for me, I wasn’t afraid to call you my friend, and I’ve prayed and thought about you ever since.

“I will always remember our time together. I’ve still got your journal, too. It sits by my bed stand. But I’ve gotta go. My parents are probably wondering where I am.

“Write back, OK. … someday?”

Her thin, pale legs rose against the night. She breathed slowly and hid her hands in her pockets. Looking out among in the field covered in iron, grass, and granite, she thought of that Tuesday morning and shut her eyes. The precipitation had now turned to ice on that rare, frosty day in Richardson, a rural town just north of Dallas, Texas. She listened and tried to empty her mind of everything but of that moment, there with him, far removed from that day, exactly one year ago, when darkness gushed down his spine.

“Write back,” she said again, turning back down the hill toward the halos that burned through the fog and mist.

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Trevor and Blair

By Jeremy Styron

Vapors rose, stinging his palm as he grasped the lip of the coffee mug with his left hand and slowly spun it in fourth-turn increments. His right hand hovered over a notepad. She, with her small hands and sharp, blue eyes hung there in his mind, weightless, her straight, dark hair falling over a black trench coat. White flakes trickled down from the ether and rested in contrast on her shoulders.

“My dear Blair,” he scribbled in a type that would have been readable only to himself.

He shook his head, while the sound of ripped and crumpled paper crackled through Mama Green’s, a tiny, grease spot, family-owned diner on the corner of Main and Pine in that suburban desert of Glennville.

A fresh sheet soon revealed these words: “Red wine and sleeping pills help me get back to your arms.” He dried the steam from his hand and cupped his head there, remembering the rest of the Radiohead song that dragged him through many scattershot nights.

He choked his pen and continued: “Stop sending letters. Letters always get …”

“Can I top that off for you, sir?” interrupted a waitress as she was making the rounds with a full pot of the sobering, gut-warming goo. He glanced up at her name tag, giving him pause.

“Sure, thank you, Angel,” he said. “I’m ready for the check too, just whenever you get a second. No hurry.”

“Yes, sir. Right back.”

He continued, searching his memory for something … anything. He lifted his pen, turned the pad sideways, and in quick movements, pressed down on the yellow surface, his hand tremoring across the page. “All that’s sacred comes from youth,” he wrote perpendicularly to the computer-rendered, blue lines of the pad as memories returned of a girl dancing in front of him on a cold, snow-lit day.

Trevor took a sip of the sugarless, creamless drink. He always imagined it had been mixed by equal parts water, coffee grounds, and cigarette ash, for it tasted more like a product of Marlboro Country than of Brazil or Colombia. He scanned the restaurant from the upper tip of his round, wire frames. The wood-paneled walls led up to a water-damaged ceiling and down to a cold, white-tiled floor. Scents of breakfast hung in the air, as the lunchtime crowd numbered about 20, mostly hobbled seniors and construction workers seeking the breakfast they missed five hours ago. Four 50-something men were seated on benches at the bar, watching two cooks crank out meals as if on some Detroit assembly line.

“Tammy, you’re up!” Trevor heard from one of them, as he put the once full plate of pattied sausage, fried eggs, and hash browns to the side.

Despite the decayed environs, Trevor felt as if this was the warm center to which he could daily come. This was home. Not his wall-papered, carpeted, dirty-clothes strewn apartment on the north side of town, but in this place. It was here, at the center, where he could listen to songs that made him fall away from this seemingly mindless glob of planets, stars, and people without distraction. He didn’t need the help of an MP3 player; the songs in full would come roaring whenever he summoned them from the ever-present tape deck of his soul.

“Here’s your check, sir,” Angel told him.

“Thanks.”

As he grabbed his brown, corduroy jacket and scooted out of the booth, Ravel’s “Bolero” pushed through his cell phone speaker into the restaurant.

Pausing a few seconds to listen to the soaring march, Trevor finally answered. The voice on the other end said, “Hey, man. We need you to cover something. We’ve got a bus wreck on Sprucewood near the mall. Apparently, a class of middle schoolers were on their way back from a field trip to the courthouse, and a TrailBlazer pulled out in front of them. The driver of the SUV was intoxicated, according to the report.”

“Alright, I’ve got the camera in the car, so I’ll head over there,” Trevor replied.

“Sounds good,” answered Stephen Lambert, managing editor of The Glenville Post.

It was a chilling, overcast, and windless Monday afternoon.

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Out of time

Your years consumed
here [
spreadsheets and pensions
401k heart attack, red bull,
slim fast, sales cost analysis,
charts, graphs, shrinkage, cold calls,
“sell me,” you say, “and i’d buy. i would keep me.”
atomic clocks, the laughing, the typing,
the cold productivity,
and the reasons to compete with richard so-and-so.
salary commensurate with experience, retirement,
the ice age, glaciers, a frozen shore, line them up,
send them off, you wish she would
come invest with us, your block of ice
left you yesterday, and all along, you knew.
you just knew march was gone.
the laughing clowns at the office,
green bills and paper weights,
reports. yes. redlights blinking,
traffic overflow, taxis streaming over the edge,
blinding sun and heat wave, your suit, your tie,
your spit-shined, polished desk,
your fucking shiny novelty pendulum swings] and
and the beloved irises that visit when you wake.

(2003?)