This entry is not in chronological order. In the original publication of Julie’s Story, this disruption of the time sequence was, in part, an artifact of when I happened to stumble across this set of emails. The other reason was that, at the time, I didn’t have the fortitude and psychological energy required to write about the end of her life.
I am reposting these chapters in the same order as when they were originally published. And, the nonlinear sequence mirrors the chaotic intrusions of these exacerbations into our life.
Except for the time period covered, this post is similar to The Hospital Epistles: May 1998, and Uncompromising Faith, Unremitting Hope, Unyielding Love. I will preface it with the same explanation and apologies: This is a collection of emails I sent our family and friends to let them know about Julie’s condition during her hospital stay from March 29 to April 6, 1999. This correspondence was composed on the run and is recorded here as it was originally written, so it may contain more than my usual quota of typos and grammatical glitches and, because I was not privileged with foreknowledge of the plot line, the dramaturgy is disadvantaged. The content is also more medically oriented than one might otherwise have anticipated. I’ll leave it to the reader to decide the mix of psychological and pragmatic elements that led to my choice of subject matter.
Sunday, March 28, 1999 8:40 PM
To Our Friends & Family –
I regret that I am writing to let you know that Julie has again been hospitalized.
Since Saturday evening, Julie had grown increasingly disoriented and confused. I contacted her nephrologist who thought that her routine evening dialysis might resolve the problem. Early this morning (Sunday, 28 March), however, it was apparent the situation was worse, and I again called her physicians, who agreed that an evaluation was needed. By mid-morning, she was seen in the Emergency Department at Alexian Brothers Hospital and by early afternoon she was admitted to the Intensive Care Unit, where she remains at present. By this afternoon, Julie was unable to respond appropriately to any queries or to follow simple instructions. She also had two seizures while in the Emergency Department.
Serendipitously, all three of her primary physicians — her internist, her oncologist, and her nephrologist — were on on-call this weekend and saw her before she left the ER. She has already undergone her usual gauntlet of examinations, including blood tests; blood pressure, temperature, and pulse readings; chest X-ray; EKG; brain CT scan; and a variety of poking, probing, and prodding by various clinicians. None of these has revealed pathology sufficient to account for the mental status changes. A neurological consultation is scheduled for tomorrow.
The smart money re diagnosis appears to be on a new medication introduced to Julie’s regimen Thursday in hopes of ameliorating the spasticity in her mouth, neck, and jaw. After Julie became disoriented Saturday night, I did a quick Internet search and found that not only are confusion and ataxia occasional side-effects of the medication (baclofen) but also that fully 80% of this agent’s metabolism is accomplished through the kidneys. In effect, that means that, even with dialysis, patients such as Julie who have compromised renal function are at risk for toxicity from this medication if given at routine doses. If this is indeed the cause of the problems, the treatment of choice is tincture of time, i.e., waiting for the liver (which is responsible for the other 20% of the drug’s metabolism) to eliminate the active agent. It’s not certain, according to the literature, but ongoing dialysis may be helpful as well.
Sam & Max are concerned but have seen their mother pull through so many crises that they are certain of her recovery. I am striving to share their faith and optimism.
The ICU allows only immediate family to visit and, in any case, Julie is unable to participate in an interchange. I will forward any changes in her status, including transfers to a less restrictive ward. As was true in her last hospitalization, I am sending these notes to a list of folks composed of those who would, by my guesstimate, be interested; if you do not wish to receive these reports, just let me know.
As always, we appreciate your thoughts and prayers.
Monday, March 29, 1999 9:18 PM
There has been almost no change in Julie’s status over the past 24 hours. She remains arousable but cannot carry out simple instructions; it’s not clear that she recognizes anyone.
I spoke at length with Julie’s attending physician. The working hypothesis is still that this syndrome was and continues to be caused by the medication she took for two or three days last week. If this is correct, it could take several days for the drug to be metabolized sufficiently for Julie’s mental status to improve.
Julie’s treatment in the ICU is limited to supportive care, ongoing dialysis, and supplemental oxygen. Diagnostically, the doctors remain concerned about the possibility of her cancer invading the central nervous system. Consequently, she received an EEG today; a lumbar puncture and MRI are also being considered.
We value the support, prayers, and offers of help we’ve received. If I have not yet responded to your calls or email, it’s because of the time crunch in which I find myself, not because we are not appreciative. Thank you all.
Tuesday, March 30, 1999 9:10 PM
Good Evening –
There is little to report about Julie. She continues to be arousable and able to move her limbs but does not respond to requests or queries.
Hemodialysis did start today and will continue as a supplement to her peritoneal dialysis. I spoke to the neurologist, who saw nothing to be gained at this time by a lumbar puncture or MRI so those tests will not be carried out — at least for now. I also spoke to the nephrologist and internist, but neither had anything new.
The core message is that — unless her symptoms change — significant adjustments to the treatment she is receiving now are unlikely.
Now we wait.
Wednesday, March 31, 1999 5:06 PM
You may recall that my last message closed with something like “now we wait.” Well, sometimes the wait is a long one; sometimes, it’s not so long. I received a call from the ICU between 6 & 7 AM that Julie wanted to talk to me. (Actually, she wanted to talk to me at 4 AM but she couldn’t convince the ICU nurses that I am always awake by 4 AM.)
Julie is able to respond to instructions, understand questions, and participate in her treatment. When I walked into her ICU “room” in late morning, she and the dialysis nurse were discussing details of her complicated dialysis routine.
This is not to pretend that all is well. Julie is delusional (she thought, for example, that the kids had been at the hospital that morning), is still confused as to date and time, and occasionally hallucinates. She also has abdominal pain, moderate respiratory difficulty, and back & leg pain (from being confined to a bed for four days). While she asked for her computer to write email, this is not yet in her capacities — either mentally or physically. Nonetheless, being able to talk to Julie again has overcome even my overdeveloped pessimism, rendering me, if not giddy as the proverbial schoolgirl, at least downright joyful.
I haven’t spoken with her physician yet so I don’t know the official plan. I do know she had been seen today by Occupational Therapy, the Dialysis Therapist (Julie continues to receive both hemo- and peritoneal dialysis), Physical Therapy, and a very nice nurse whom Julie has unfortunately if not inaccurately designated “the Vomit Therapist” (her job is actually administering the optimistically named “swallow test”). Julie apparently passed the test since the Nutritional Therapist came by to schedule Julie’s first meal since Saturday. If you’re interested, Julie’s choices were soup & sherbet with a side of Ensure.
It seems spectacularly unfair that anyone as good and gentle as Julie should spend so much of her time and effort either biting the bullet or dodging it. Of those rotten choices, however, dodging –- trust me on this — is the way to go.
Julie, whose manners surpass mine even when she’s delusional and hallucinating, made me promise to thank everyone for their concern and prayers. My thankfulness, if less obsessively expressed, is no less heartfelt.
Thursday, April 01, 1999 5:01 PM
The content of my update this evening is, I suppose, less dramatic than Julie’s reawakening yesterday. Nonetheless, this may be one of those times when “more of the same” isn’t so bad.
Julie is much more cogent today than yesterday although there is still significant confusion on her part. To meet her requests, I lumbered into the ICU burdened by two bags that United Airlines might have denied carry-on status. Thankfully for my back, the ICU permits no cellular phones or laptops (I offered to make sure she turned them off until five minutes after takeoff but they stood firm). Julie did smuggle on board her own nightclothes, two books, pen & paper, a Walkman, a recorded book on tape, my Jimmy Buffet and Beach Boys tapes, pictures of the kids, her phone directory downloaded from her computer, and printouts of all her email (half of which I read to her during today’s visit). I have no idea how much of this stuff she will be able to operate (I thought it was a tad early for the squash racket), but as many of you have observed, her requests have always proven irresistible to me. I also managed to track down some decent strawberries which were a big success (admittedly, it’s not so hard to achieve “big success” status when the high point of the preceding meal was Gerber’s Baby Food applesauce).
Discussions now involve what kind of dialysis Julie should have in the future, when to pull the femoral catheter, how much longer to stay in the ICU, and so forth. As decisions are rendered, I’ll pass them along.
Sam wants me to let folks know that the first of his mother’s daffodils is now is full bloom. Julie passes on her love.
Friday, April 02, 1999 10:22 PM
My update tonight is less cheerful than those of the last two or three days.
You may recall from an earlier message that Julie had experienced some problems with her breathing. These have worsened. After conferring, the internist and neurologist have ordered a minor tranquilizer, a ventilator mask (AKA oxygen mask), and medications administered in the gas mixture to shrink congested tissues within the breathing apparatus. When these proved unsuccessful, a laryngoscopy was completed with the discovery that two of her vocal cords were paralyzed. At this point (approximately 9 PM Central Time), a pulmonary consult is planned for later tonight.
The difficulty breathing increases Julie’s anxiety which then increases the difficulty breathing and so on.
I’m hopeful that the pulmonary consultation will lead to a definitive treatment plan. I’ll let you know what happens.
Saturday, April 03, 1999 8:16 PM
Good Evening –
I fear that this hospitalization may permanently warp Julie’s sensibilities as a writer. The conscientious writer, I’ve been instructed, keeps in mind the rhetorical question favored by her writers’ workshops, “Did the narrative earn that ending?” (To achieve the proper literary affect, it’s essential to voice this phrase in a taunting, disapproving tone and to emphasize and extend the fifth word as “earrrrrrn.”) Were Julie to write an essay on the course of her illness (I envision a long Susan Sontagesque piece in the New Yorker), it would, I’m sure, point out that the Sturm und Drang laden descriptions of her medical problems — whether in her medical record or my email updates –- inevitably leads to an anticlimax.
And, as it turns out, I have a specific example in mind. Remember that ominous stuff in yesterday’s update about respiratory problems and such? Well, as my east coast metroplex buddies say, “fugedaboutit.” At 11 PM Julie was gasping for breath and was so agitated that despite medications and restraints she pulled out her femoral catheter (no small task). The nurses worked with her throughout the night. The pulmonary consultant arranged for emergency CT Scans and an MRI. (I feel compelled to include these details by way of declaring, in emulation of my literary role model, Dave Barry, “I am not making this up.”)
By the time I called to check on her this morning (showing rare restraint, I waited until 7 AM), however, Julie was, in technical terms, “a heck of a lot better.”
She has had no breathing problems today, she is more cognitively intact, and she just looks better.
When queried as to the cause of the sudden improvement, the pulmonary consultant, the internist’s on-call coverage, the nephrologist’s on-call coverage, the infectious disease on-call coverage, and the ICU nurses (I didn’t poll the oncologist’s on-call coverage), in a display of remarkable interdisciplinary accord, responded as one —
Julie is still confused about what has actually happened versus what she has hallucinated over the past several days, but seems in touch otherwise. She remains weak, not having been out of bed for a several days and not having been allowed food or drink by mouth because of the fear of aspiration.
Nonetheless, things were so ho-hum by this afternoon that Julie was deemed no longer pathological enough for the ICU and was summarily moved to a regular room. Should you wish to contact her, the address and phone number follow.
She tells me she will be ready to handle phone calls Sunday. My experience, for what it’s worth, is that she tires easily.
What can I say? To that rhetorical question, I rhetorically answer,
Well, “thanks” seems inadequate but I can’t think of anything better.
Monday, April 05, 1999 11:15 PM
OK, who had Tuesday in the pool?
Yep, Julie now has an estimated date of discharge: 4/6/99.
Da Boyz & I visited tonight. Sam and Max were polite enough but they were clearly underwhelmed — no seizures, no new tubes going in and out of her body, no hallucinations, … .
Julie seems, in fact, fully recovered from those symptoms that began cropping up 10 or so days ago with the only obvious sequelae being pervasive and profound fatigue.
Unless there’s a catastrophic change in plans, this concludes my epistolary efforts until the next episode of crisis journalism or the Christmas newsletter, whichever comes first. While these messages fall in a specialized niche and provide an inherently one-dimensional view of Julie, I will point out that when I turn up in her short stories, I’m not exactly portrayed as a testosterone-enhanced version of Alan Alda. The most sympathetic version of yours truly I can find in her work features me as an accountant (one of the few trades arguably duller than psychiatry) who has died before the story starts. So — if Ms Pushcart Prize doesn’t like it, she can quit going into the hospital.
We thank you for you thoughts, prayers, and support. We invite you to celebrate this homecoming with us.
Wednesday, April 07, 1999 12:09 PM
Well, maybe this is the “catastrophic change” mentioned below. Apparently, some folks got the following note and others didn’t. So — if it’s redundant, you have the chance to be happy twice. If you hadn’t received it, I offer my apologies.
Julie has left the [hospital] building.
Julie Showalter was the fiercely intelligent, sexy, and loving woman with whom I had a outrageously wonderful marriage that ended with her death in late 1999 from cancer diagnosed the week of our wedding nearly 20 years earlier. She was also a brilliant scholar, the mother of our two sons, and a prize-winning author. Many posts on this blog are about her and still others consist of her writings. Julie’s Story is the account of our unlikely romance, Information can be found at Julie Showalter FAQ.
- Next Installment: 20. Julie In-Hospital In June 1999 – Email, Notes, & More
- Previous Installment: 18. Julie – November 21, 1999 Status Report
- First Installment Of Julie’s Story: 1. This Is How A Love Story Began
All posted chapters can be accessed at Julie’s Story
Note: Originally posted Nov 12, 2006 at 1HeckOfAGuy.com, a predecessor of AllanShowalter.com