Julie’s Story: 16. The Hospital Epistles – May 1998

Introduction

One predictable result of shifting the format of Julie’s Story from a serialized narrative to sporadically published anecdotes is the loss of chronological order. My recall of events in our lives together, especially after the wedding, is based on a process that assigns a low priority to calendar correlations, and, sooner or later, that will inevitably be reflected in a jumbling of the timeline.

Making a convenience, if not a virtue, of this reality, I am posting material today from a period 18 years after our marriage and less than two years before Julie’s death.

By the late 1990’s, I would typically notify family and friends of Julie’s hospitalizations or other healthcare problems, when she was incapable of managing that task, by email. When she was admitted as an inpatient for the last two weeks of May 1998, I simplified the work by sending the same daily report of her condition to the folks she listed. While this communication was supplemented by individual emails and phone calls, the daily report proved a useful means of keeping in touch with those folks important to Julie.

Because Julie was often delirious or otherwise incapacitated, these summaries were also helpful to her post-hospitalization as a record of what had happened.

Today’s post consists of a collection of those emails I sent during her hospital stay those two weeks of May 1998. This correspondence was composed on the run and is recorded here as it was originally written, so it contains 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.

The Email Report Of Julie’s May 1998 Hospitalization

18 May 98
I am saddened to tell you that Julie has been hospitalized this afternoon. The problems which have plagued her the past week or two have not remitted, and her physician felt that hospitalization was necessary, both for symptom relief and for further testing to determine the cause of these problems. As of mid-afternoon, she was heavily sedated and receiving fluids and medications via an intravenous line.

At this time, no one is willing to speculate on how long she will be in the hospital. As I know more, I will let you know.

Julie’s room number and address follow. She can be reached by phone by calling the number listed below and following the voice mail instructions. She is scheduled for a bevy of tests yet this evening so I suggest deferring calls until tomorrow.

Bed 307-2
Alexian Brothers Medical Center
800 Biesterfield Rd # G1
Elk Grove Village, IL 60007
(847) 437-5500

I apologize for the impersonal tone of this note but I wanted Julie’s friends to know what was going on as rapidly as possible and, frankly, I don’t think I’m up to anything more affectually-laden. All of us appreciate your prayers and hopes.

–Allan

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19 May 98
Julie remains in the hospital.

She has asked me to thank folks for the flowers but I have, of course, lost the list she gave me. My apologies. I do recall she asked that someone be told that “lilies were, indeed, available and delivered.”

The immediate problem appears to have been identified as inadequate functioning of her kidneys. Julie’s kidneys were damaged some time ago, probably as the result of one of the courses of chemotherapy. The relevant blood work was significant enough that dialysis was considered although now it appears that rehydration may be sufficient. Consequently, the decision re dialysis is still pending.

A brain CT Scan showed no pathology. She continues to undergo extensive testing today and was, in fact, out of her room most of the day. This may have taken a toll on her. Although she sounded cheerful and quasi-alert on the phone throughout the day, by the time we arrived at the hospital at 6 PM, she had undergone an episode of nausea and pain requiring extra doses of medication which rendered her scarcely awake for the few minutes we stayed.

I did deliver her e-mail printouts which she plans to review tomorrow morning. I’ll relay her responses.

A million thanks for all the kind words and multiple offers of help

–Allan

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21 May 98
I should preface this report with my recognition that some folks might prefer not read this kind of thing. especially when it’s presented in what may appear a cold, technical manner. If so, just send me a note and I’ll be happy to remove you from further mailings. I find it maddeningly difficult to select and adhere to just the right shibboleths of appropriateness. If I’ve upset anyone, I apologize and will do my best to prevent future problems.

Little has changed with Julie’s condition. She remains fatigued and mildly confused (from the medications) and is still vulnerable to episodes of severe nausea and pain.

When Julie underwent her CT Scan of the brain the first day of hospitalization, this test was done, because of Julie’s poor kidney functions, without the injection of contrast fluid that radiologists prefer for the clearest images. So, although the CT Scan showed no pathology, to assure that no tumors or other problems were overlooked or obscured, Julie had an MRI done today. As of this time, we don’t know the results.

A neurological consultant opined that her headaches were more likely migraine derivatives than the charmingly labeled “tumor headache.” Consequently, she has begun a regimen of pain medication designed to treat migraines. The early results are equivocal.

Julie’s white cell count has dropped to the point that infection has become a danger. Hospitals are, in my opinion, wonderful places if you are sick; unfortunately, hospitals are also wonderful places if you’re a bacterium or virus, especially a bacterium or virus of the sort physicians categorize as “atypical.” As a result, Julie is now in “reverse isolation” (i.e., visitors must wear surgical masks to enter the room, gloves if they plan to touch her, and, as the nurse peering over her glasses at me explained, surgical gowns if one intends to hug her). The “reverse” in “reverse isolation” just refers to the intent which is to protect Julie from our bugs rather than vice-versa.

The working hypothesis remains that impaired kidney functions are at the root of all this. The decision about dialysis is still pending.

Because Julie is sedated and weakened, she cannot muster much attention for any activity, even calls from folks she loves. I read her e-mail to her daily as she requests, but she turns down my offers to read other material to her. She’s received a bevy of flowers which she enjoys (and for which the senders will be thanked if I ever find the list I lost yesterday). At the risk of offending anyone or sounding officious, I do suggest that, if you’re considering a visit, to call first to determine if she can manage the contact.

Again thanks for the expressions of concern, assistance, and love.

–Allan

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22 May 98
There has been almost no change in Julie’s condition. Faced with this lack of improvement, her clinical team has decided to begin dialysis in hopes of clearing the toxins from her blood, a task her kidneys have not been able to accomplish.

A brief explanation of dialysis procedure is necessary at this point. Because dialysis involves the patient’s blood being shunted through a mass of tubes, pumps, and membranes that performs the filtering in place of ones own kidneys, it is necessary to establish a large enough pipeline such that large amount of blood can flow rapidly from the body to the dialysis machine and back tot he body. This is routinely accomplished by installing a port — essentially, a larger, permanent version of the needles used to obtain blood samples and the i.v. needles used to infuse fluids and medicines.

The immediate delay is the belated discovery that her blood is not clotting as rapidly as it should. Consequently, the port cannot be installed until this defect is repaired. So, Julie is now receiving blood products to enhance clotting. These products are stored in a frozen state and require approximately an hour for thawing and another four hours or so for each unit to be infused. Julie has two units ordered.

Consequently, the earliest the port can be installed is very late tonight. It is more likely to be installed tomorrow morning with the dialysis itself to follow shortly thereafter.

Otherwise there is little to report. Julie regularly requires i.v. morphine and other pain meds as well as a batch of anti-nausea and supplementary agents. It therefore comes as no surprise that she cannot focus attention or maintain the energy to read a magazine or carry on a conversation.

While there are no guarantees nor any reason to don rose-tinted glasses, dialysis can result in startling improvements, and I’ve chosen to believe such will be the result for Julie.

–Allan

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23 May 98
You may recall my evaluation that dialysis sometimes results in miraculous results. Well, apparently even the threat of dialysis can be pretty dramatic. Since yesterday, Julie has made an impressive improvement. She is clearly more alert, she is in less pain, and she is less nauseated. Her kidneys have begun to function somewhat better. She has also been removed from the reverse isolation restrictions.

This is by no means a guarantee of continued improvement, and Julie remains very ill. And, dialysis remains a possibility. The doctors, however, thought the change significant enough that they chose not to proceed today with the scheduled insertion of a port or the dialysis.

Julie was able to spend a prolonged period visiting today with her sister, brother-in-law, and nieces. For the first time in four days, she felt up to seeing Sam and Max.

While I am by nature too cautious to feel that Julie is, as we say back home, out of the woods, I cannot help but celebrate.

–Allan

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24 May 98
This morning, Julie seemed as good as but no better than yesterday. This external appearance was matched by her blood tests which revealed that the level of toxins normally cleared by the kidneys remains abnormally high and, more significantly, has not diminished over the past week.

Julie and I spoke with the renal consultant on her Sunday rounds. The consultant, in answer to Julie’s queries, thought it increasingly unlikely from this point on that her kidneys would spontaneously begin functioning more effectively and recommended going ahead with the dialysis. Julie’s response was that she wanted to start the process as soon as possible. By the time I left the hospital, the team that would insert the port had begun gathering. A “half-speed” dialysis (to allow her body to adapt to the changes in blood chemistry) is scheduled for this afternoon with a regular session scheduled for tomorrow. While there is some chance that the dialysis would be a one-time intervention, it is more likely this will be an ongoing procedure even after Julie leaves the hospital.

As was true yesterday, Julie’s sister, Tommye, is spending most of today with her. Tommye and her family return home tomorrow. Sam and Max visited again this morning as well.

Several folks have asked me whether they should visit or not. I discouraged outright any visiting prior to yesterday and still urge that anyone who wishes to visit call Julie first to determine whether she can manage the contact. She remains nauseated and fatigued most of the time. I am ecstatic that she is less nauseated, less fatigued, etc but do not wish to mislead anyone into thinking she is at a point that in any way approaches her normal health and activity level. I also ask that even phone contacts be kept brief. Several of us, including Julie’s doctors, have noticed that her talking for more than a minute or two typically exacerbates her nausea.

While I’m disappointed that her improvement has stalled, I am incredibly grateful that she is able to function as well as she is.

Again, thanks to all for the good wishes and offers of help.

–Allan

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25 May 98
One of the problems with reporting on Julie’s condition is that she shares the characterologic pathology of all Rothwell women which allows only two possible presentations during an illness:

  1. Julie is perky
  2. Julie is in a coma

Today, she displayed both.

I arrived at the hospital after the completion of the full session of dialysis at 1:45 PM. She awoke briefly, muttered a few words I couldn’t understand, and slept while I read. She was still asleep and barely rousable when I left at 4:30 PM. I returned home, picked up the kids, and made my routine evening call at 6:30 PM. Although her voice was hoarse, she was otherwise in full-perky mode. For the first time in two weeks, she laughed at one of my jokes (Yeah, I realize that I can tell jokes for 2 weeks before hitting a funny one; she’s usually just too polite — and too perky — not to laugh). By the end of the call, she was singing, for reasons too complex, too arcane, and, yes, too salacious to explain, “Looking For Love In All the Wrong Places.”

So — she is still in some pain and has some episodes of nausea (although these episodes are less frequent than before). She remains on that the “Mess-O-Meds” drug regimen. But I’m almost sure that in the internal medicine rotation of my 3rd year of medical school at the University of Missouri I was taught that the warbling of trashy lyrics by good-looking female patients is a good omen.

I hope to catch the doctors tomorrow and, if so, should know substantially more then.

–Allan

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26 May 98
Julie’s condition has worsened. After being somnolent most of the day, late this afternoon she became agitated and much more confused. She continues to be in pain and to experience nausea. This deterioration has taken place despite dialysis which has corrected most of the lab values dependent on kidney functions.

The doctors are running still more tests and manipulating her medications but can provide little explanation re the reasons behind the deterioration.

I’ll let you know more as I hear it.

–Allan

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27 May 98
The only change I can detect is that Julie is less agitated than she was last night. I stay with her through the afternoon but she couldn’t stay awake for us to talk for more than a minute or two or to listen to my reading. When she did talk, it was apparent that she remains very confused. There was no dialysis today; her laboratory values are in fine shape but there is no correlative effect in her presentation.

I have spoken to all the doctors who are major players in her care. No one seems to have a clear theory about the origin of Julie’s acute problems. The current plan, such that it is, is to allow some of the narcotics she has been taking to wash out of her body after their discontinuation. If that causes no change, the oncologist, nephrologist, internist, and neurologist plan to meet to map out a strategy.

–Allan

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28 May 98
The news I have is good; there’s just not nearly enough of it.

Julie is, as evaluated by the nurses, physicians, and me, more coherent today and much less agitated than a couple of days ago. The mildest probing, however, reveals that she is still delusional. I should point out that delusional content is not unusual with certain medications and with certain physiologic disorders. As any good shrink knows, being delusional doesn’t necessarily affect cognition except indirectly. After a couple of days during which she couldn’t even tolerate being read to, for example, Julie today listened to a short batch of accumulated e-mail.

Nausea persists and Julie has taken, by my estimates, less than 200 calories of food in the past two weeks. Modest exertion, such as talking for more than a minute or two results in vomiting.

The nephrologist (kidney specialist) is convinced that, while her kidneys remain dysfunctional, the dialysis (another session of which was held today) has cleared away any of the toxins which could have caused the problems which have plagued Julie the last few weeks. The persistent nausea, pain, mental status changes, and so on must, according to the nephrologist, have another origin.

The oncologist (cancer specialist), who has treated Julie since Sept 96 when we moved to Crystal Lake, suspects that there may be an invasion of the meninges (membranes that surround the brain) by cancer cells. This diagnosis would explain the series of symptoms Julie is exhibiting. A lumbar puncture about 5 days ago showed no diagnostic cells in the spinal fluid although some nonspecifically abnormal cells were found. The neurologist and oncologist have decided to perform a second lumbar puncture to again look for these pathological cells and are considering taking a larger than usual quantity for special testing that uses radiological labeling of certain antigens which are markers for cancer.

Julie and I do thank you for all the continued support.

–Allan

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29 May 98
I have observed – primarily to captive patients – that medicine (and this is perhaps true for most professions) is a humbling occupation if it’s done well and if the practitioner possesses self-awareness and intellectual honesty. The course of Julie’s hospitalization is yet another example of this principle. (I have also observed that finding anecdotal manifestations of my own beliefs is surprisingly easy, almost as easy as it is to discover flaws in those events that might seem to the unwary to be in conflict with my hypotheses.) In any case, she seems back on that roadway (assuredly a toll road) labeled “Out of the Woods.”

When I walked into Julie’s room today, she was, for the first time in three weeks, reading. Admittedly, she was reading a one week old Time magazine rather than The Collected Works of Tolstoy. But she was reading and comprehending what she read. She has had no acute pain for two days despite decreases in some of her pain medications and discontinuation of others. Late yesterday, with the help of a nurse, she strolled a few feet down the hospital unit’s aisle and back. She demanded I read her e-mail to her for 45 minutes (which brings her within 24 hours of being up to date) before she tired.

My core pessimism coerces me to point out that Julie remains constantly vulnerable to nausea and vomiting — although she was able to eat some toast for breakfast. She is profoundly weak. While the severe and specific pain she suffered before is, at least for now, in abeyance, she has much generalized aching and soreness.

She also remains pervasively delusional. I point this out in such bald language (the nursing staff prefers “confused” and I sometimes cop out with “mental status changes”) for two reasons: (1) to warn you that if you talk to Julie by phone or in person, she may well, in a matter of fact way, lay out for you, for example, an internally consistent tale of hospital cabals, murder conspiracies, or electronic listening or telepathic devices and (2) to avoid the fallacy that afflictions that affect the brain are somehow more fundamental than a dermatological symptom.

The folks on this mailing list are adults so I am not proclaiming to anyone in contact with Julie “the right way” to handle this. I do, on the other hand, have these thoughts that may be useful: (1) these symptoms are likely to attenuate and disappear as the others have; (2) using logic to prove delusions inaccurate is a fool’s task with mutual agitation the only likely outcome; (3) validating delusions is also counterproductive; (4) talking about non-delusional topics seems to comfort her.

If I adhered to a purer strain of Freudian thought (a constraint, by the way, that Freud honored primarily in the breach), I would see more significance in the increasingly benign content of Julie’s delusions. This afternoon’s fantasies featured a new baby daughter and me appearing naked – just your basic wish-fulfillment mental mechanisms.

I spoke to Julie’s oncologist at the hospital today. After much muttering of medicophilosophical ideas (an exercise which does seem to assuage my anxieties and those of the oncologist without interfering with Julie’s well-being too much), we concluded that Julie’s acute decline a few days ago and her equally abrupt improvement were most likely caused by either the diurnal shifts in humours or karmic vibrations. Otherwise, beats me.

The aforementioned lumbar puncture was completed this afternoon. The blood tests of kidney function are still well below the danger level and her morning cortisol was normal. The newest addition to Julie’s medical corps are the gastrointestinal troops who are consulting on possible causes of the nausea. At their request, a series of x-rays of the g-i system was completed this morning.

Forgive my indulgence in prolixity and lame wit; it’s the closest I can come to a celebration. I apologize for having fallen behind in answering some specific e-mail messages and having been brief albeit not, one hopes, abrupt on the phone. Please be assured Julie and I are each aware and appreciative of the outpouring of caring and the deeply felt hopes of her friends.

–Allan

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30 May 98
With the recent improvement in Julie’s condition, I’ve had several requests that I publish again her address and phone.

Julie Showalter
Bed 307-2
Alexian Brothers Medical Center
800 Biesterfield Rd # G1
Elk Grove Village, IL 60007

(847) 437-5500

–Allan

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30 May 98
Julie seems to be on a winning streak. She reports that the nausea is decreased although not altogether vanquished. There was no evidence of impaired reality testing. She is still weak and seems to have lost her voice. She was eating the traditional hospital-jello of ambiguous flavor and swigging (well, sipping) plastic tubs of red fluid emblazoned with a label pronouncing the contents, with perhaps more hope than accuracy, to be “cranberry cocktail.” Ah yes — the inpatient version of the high life.

With a husband’s precision of timing, I appeared just as she completed today’s dialysis and thus obligated her to a visit when she was at her weakest. Nonetheless, we caught up on e-mail reading. Julie was incredibly touched by the realization of how many folks were sending her messages every day or so and how many hopes, prayers, good vibes, etc were being presented in her name.

Today’s lab report: Gastrointestinal exams and X-rays show no pathology and the second lumbar puncture was clear of abnormal cells.

A somber assessment must include the recognition that Julie is still ill, that her underlying conditions have grown worse in the past two months, and that the last two attempts to treat her were ineffectual and triggered horrid side-effects. Further, while Julie appears to tolerate the fatigue, she is increasingly frustrated that she still loses her chain of thought after five or six sentences and suffers from muddled logic and flawed memory. Nonetheless, my response, reflecting the fact that this represents a notable improvement in her cognition over the past few days, consists of hoots of glee. Go figure.

–Allan

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31 May 98
Like Julie herself, this is short and sweet. She continues to improve, approximating once again her usual standard, shared with Mary Poppins, of being “nearly perfect in every way.”

She complains of poor hand-eye coordination although this seems to correlate with how much energy she has at a given time. And, her concentration, while progressing back toward normal, is still a problem.

On the other hand, around midnight, she developed cravings for and convinced the nurses to concoct a ham sandwich, which she devoured without apparent trauma. She has been sitting up much of the day. She visited with the boys for a full 30 minutes today (although this is probably more indicative of how happy Sam and Max were to see her than of Julie’s stamina). She required that I bring in reading material of a meatier variety so Time and Newsweek have been displaced by The New Yorker and Irving’s A Widow for One Year. She has fired me from my e-mail reader position and plans to take on that task herself. I’ve also been instructed by She Who Must Be Obeyed to inform her fan club that she will gradually contact you all beginning this week. (I think the covert message is not to believe a word I tell you unless she confirms it.) I suspect the only reasons I’ve so far retained this e-mail commentator’s role, are because of Julie’s poor concentration (when that facility is recovered, I will, no doubt, be reduced to an amanuensis) and her problem with coordination which precludes keyboard use.

–Allan

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1 June 98
It is with gratitude and happiness that I announce Julie’s return from the netherworld of Hospital-land to the Showalter homestead (AKA The Crystal Palace). Julie is very weak (the 30 mile drive from the hospital and our walk from the driveway to the living room were of approximately equal duration). And there are still islands of confusion about past events but she is recognizably and uniquely Julie again.

She now begins thrice weekly hemodialysis. She has a follow-up appointment this week with her oncologist to determine the next step in that course of treatment. Those, however, are small potatoes indeed when compared with her recovery.

I am, therefore, signing off as your health/social correspondent, leaving you to Julie’s tender mercies. Thanks to each of you for all the support and help.

–Allan

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Julie Showalter

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.

Julie’s Story

 

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