Eight Is Enough

We came home from the hospital Saturday night. It was eight days and seven nights at Howard County General.  The experience was not an exercise in the best that our health care system can deliver. There were unnecessary medications prescribed, unnecessary tests called for, some mistimed administration of medicines, and, with more diligent administration, could have easily been two or three days fewer. There was virtually no continuity of care with a rotation of four different physicians and physicians assistants supervising Faina's care.



Thoracentesis

 It took until Friday for it to occur to someone that some of Faina's discomfort could be relieved through a paracentesis and a thoracentisis. It was a good decision with more than a liter of peritoneal fluid being drained off and almost a liter of pleural fluid ending up in a bottle. This added a day to her stay and was a call that could have been made earlier.

Nurses shifts are 12 hours. With 15 shifts in our stay we only saw the same nurse twice, although Monday's day nurse stopped in twice to say hi and check on Faina, in a time she was assigned to other patients. The worst nurse was very good. The rest were excellent.

Most impressive, other than the newly renovated facilities, was that the hospital had a state-of-the-art tracking system for prescriptions. There was a computer file on each patient and laptops on mobile carts in which data was entered every few hours, vital signs, pain level on a 0-10 scale, and medications administered.  This technology, no doubt, will serve to prevent drug interactions, which in Faina's case, with at least eight different prescriptions, has increased potential or mismatching medication to patient. Before a medication was given, the nurse would scan Faina's bracelet and a bar code on the drug. Not that it ever did, but supposedly, an alarm would go off if there was a problem.

Faina came home by ambulance. The discharging physician insisted.

Faina did not sleep at all well on her first night home in over a week. The line that is feeding an analgesic into her system was slightly clogged, so the medication was slowly reaching her. She still received the full dose, it was just inelegantly done with way too many beeps from the pump than necessary. The dosage was also way too low, a problem that was rectified with a phone call. Her dosage was raised significantly. The pain management is still less than adequate, in part because Faina represents a moving target. The pain level increases, the drug resistance also rises, and the dosage levels are challenged to keep pace.

Late last week, Dr. K. told us that resuming chemotherapy is not an option. The name of the game, for now, is holding the pain at bay and keeping comfortable. We can bring this about best, surrounded by family and friends, here, at home in Fulton.

127 Hours

Today at around 5:00 we passed the 127 hour mark of temporary residence at Howard County General Hospital. Rabbi Harris paid a call yesterday and Marilyn came by today. Margo picked up Jamie from play rehearsal and the two spent a few hours in this 12' X 12' room. Tanya, David and Donna came by. Brother Russell stopped by this evening. The room is now properly equipped with flowers.

Faina had a rough night last night. She was uncomfortable and in some pain, usually 5-8 on the 0-10 scale. She got out of bed at about 4:00 am, got caught in the tangle of hoses and cords, slipped and fell. The cold thud of her 120 pounds dropping to the floor woke me up to an un-pretty spill with an arm and wrist looking oddly twisted. It took two nurses to get her back on her feet. The only price she paid was a slightly bruised wrist, a better deal than the other 127 hour person.

By early afternoon Thursday, it was clear that another night would be spent on the fourth floor of this house of healing. As a door prize we will be taking home a pumper pack of hydromorphone. This was the sticking point that kept us here an extra two days. The pumper pack requires a steady dose in addition to an on-demand fix, the PCA had been set to only an on-demand dose. The PCA had to be re-set to a base, steady dose and an on-demand dose, with a 24 hour period to make sure the new settings are right. It made me think of the page I get with every BC/BS EOB statement about health insurance fraud. Faina has received excellent care over these 127 plus hours, but these last two days here could have been avoided with more careful, thoughtful administration. Such is our health care system and I'm not complaining. We have met some exceptional professionals over the past few days. The PAs, the pain management specialist and the nurses with whom we have been interfacing have been good to exceptional, sensitive, patient, and caring.  Nonetheless, we look forward to getting home.

85 Hours and Counting

It has now been four days at Howard County General Hospital. The first day was mostly spent in the emergency room. The second day was punctuated by refining the pain management with a lot of sedative induced sleep time. On the third day Faina was comfortable, awake most of the day, up, walking around, and always straddling that border between comfort and pain. Today Faina was up a good part of the day. We took one walk covering the fourth floor from end to end and a second, shorter walk.

This whole exercise has been driven by the need for pain management. While the nurses are completely clear in their understanding of this as the first order of business they are often stymied in their efforts. While in the emergency room, the nurse had to wait for the doctor's ok to give a pain killer. It took three one-hour cycles before he finally made the four mg dose a standing order. This was a case of be involved and be present or delegate where delegating is really not an option. After being admitted to the hospital and given a PCA (patient controlled analgesia) pump, there were two times where the pharmacy did not have the dilaudid ready before the pump's supply ran out. In one instance it was on its way to the room and in the other, the nurse hustled downstairs to get the syringe the moment it was ready, cuttting out the delivery man/middle man from the process. One other nurse said she orders the next syringe early and keeps it in her pocket, at the ready. All of today, the pain was under control.

At one stage there was concern that Faina could have a blood clot, so she was sent to radiology for a CT scan. A later concern led to an order for an X-ray, but Faina refused to go along with that. Three times Faina was offered a flu shot. After the third refusal, and a question asked along the lines of: do you get a bonus for giving flu shots. The nurse said, "As a matter of fact, we do." She added that she could check a box that said "Patient refused" and the question would not be asked again.

There were a number of visitors today. Mom, Dad, Margo, and Jamie. Also our wonderful neighbors, Amy, Linda, and David. They are constant reminders of the wisdom of selling the Wolf Creek house and moving a few miles southwest to Fulton. Given the hit to the price of real estate, we are underwater on our mortgage, but taking residence in this community, is worth every shekel.

Among the last of the visitors was Dr. Knight. He has been covering for Dr. Koutrelakos, who is on vacation this week. He saw the CT scan results and his concern is fluid build up. He thought it could either be retaining water since the hospital has Faina hooked up to many constant flowing IV solutions. He said there is also the possibility of ascites. He suggested a PT scan as soon as possible and an appointment with the well rested Dr. K. without haste.

The last visitor was Dr. Matsunaga, the pain management specialist. Dr. M. was pleased with the situation and said that Faina could be discharged tomorrow. She would get a take home PCA pump and Hopkins Healthcare would keep her supplied. While we were hoping for a speedy discharge process, the nurses disabused us of such fanciful thoughts, and described a timetable that is likely to bring us close to sunset.

86 hours and counting.

Chai Bahem

אֲשֶׁר יַעֲשֶׂה אֹתָם הָאָדָם וָחַי בָּהֶם
My ordinances ... which if a person does, they shall live by them (Vayikra 18:5)


The third book of the Torah does not get the enthusiastic attention the first two books get because of its lack of compelling narratives as are found "In the beginning" through the exodus from Egypt. Vayikra has going for it some of the most compelling rules on which to build a society. It also has an escape clause, a rule that essentially says, you can break almost any of these hard and fast rules in order to save a life, pikuach nefesh, the highest value. Chai bahem, live by them is interpreted to mean, don't die for the sake of following these laws. Not that I purport to be a halachic Jew, but waking up Saturday morning, I was looking forward to a quiet Shabbat. It immediately became a pikuach nefesh day. 


Faina had not been feeling well most of the week. She had a few uncomfortable nights and was finding it increasingly difficult to get her pills down or to keep them down. Friday night was a new level of difficult and matters digressed over the night with the sunrise bringing pain and an inability to take the analgesics that would relieve it. This was "No Messing Around" time.


A few things were thrown quickly into a bag. We hopped in the car and sped along to Howard County General Hospital. Red lights became yield signs. There were plenty of parking spaces outside of the Emergency room at that quiet, chilly, early hour. Then came hospital bureaucracy, a form to fill out, the triage nurse, waiting for a bed to be cleared, the appearance of Dr. Martinez, and finally the first of many IV doses of Dilaudid. Pretty soon Faina progressed to 4 mg/hour and the pain receded. The doses consistently wore off before the hours ran out so I became the yenta-in-chief to various nurses. By sunset, she had been admitted to the hospital's 4th floor oncology wing. Saturday night was another long night, but of a different nature. Faina received a lot of attention. Sleep, wake-up in pain, get a dose of hydromorphone, repeat. 
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Sunday was a better day. It looks like there will be no return to the pain pills. Analgesic medication will be through IV while in the hospital and upon discharge. The pain management specialist wanted to start Faina with a Fentanyl patch. Despite us telling him that we have tried those, up to the maximum dosage, and they have been totally ineffective he was insistent. She now has a Fentanyl patch. She was also started with a pump delivering a steady dose of the Dilaudid which Faina can boost by pushing a button. She has added a few medications to her pharmacopia, but the IV pain killers are what this hospital visit was all about. She is finally sleeping easily.  

Rabbinic Wisdom and Pain Management

For pain in the stomach he should take three hundred long pepper grains and every day drink a hundred of them in wine. (Talmud: Gittin 69b)

After a few days of comfort, energy, and enthusiasm to go about in the world, things have been like a computer with way too many windows open at once. There has been a system crash. Faina has been in pain and the medications have at best tamped down level eight or nine pain to four or five. There have been a few nights that, were it not for Ambien, Oxycotyn and Oxycodone would have been totally sleepless. Since the slice of lemon-poppy loaf cake on Tuesday, there has been no wading into the pool of oral intake of food. Pure TPN nutrition (IV) and the monthly B12 injection.

The rabbis of the Talmud thought they had the solution. Their prescription of pepper grains and wine would not have been helpful in any way, but I won't sell those sages short. I have seen their wisdom come through:
"Abba son of Hanina said: One who visits an the sick takes away a sixtieth of their pain" (Talmud: Nedarim 39b). It was almost a miracle, in and of itself, but Faina was up to a visit from Rabbi Kahn yesterday. She got her energy up for seeing him and the conversation was restorative.

Rabbi Kahn has played a special role for Faina. After her introduction to the rabbinate, in the form of Israeli Orthodox rabbis and the influence they have in that society, Bruce was a radical alternative. She got to know him best when we met with him for several sessions of pre-marital counseling. He also officiated at our wedding which took place at what was already a museum, the Lloyd Street Synagogue.

Visiting takes many forms, particularly in today's world. Whittling away a the pain is a mitzvah. Special guests in our house tonight are a challah, lovingly baked by Janice, and an apple crisp, equally flavored with rachmanut, from Marilyn. The math is challenging, but imagine one-sixtieth of 59-sixtieths and then one-sixtieth taken away from that. Whittle away and whittle away.

Rabbinic Comfort Food

Faina has been rediscovering the foods she enjoyed growing up. We just made a more authentic version of ленивые вареники (lenevie vareniki - lazy dumplings) with farmers cheese from the Russian store, had some caviar (unaccompanied by a shot of distilled beverage), and cooked up a fresh pot of chicken soup. In a similar vein, Faina brought up a spiritual reaching back to a more youthful time, proposing meeting with a rabbi. Dr. K has been suggesting we pursue this spiritual side of healing almost from our first meeting.

Growing up in the Soviet Union, Faina had no contact with rabbis. Her six years in Israel did nothing to convince her that she had any need to have one be a part of her life. If anything, rabbis in the holy land had the opposite effect. Of the five rabbis I have worked most closely with Bruce Kahn was the first. He officiated at our wedding and his wisdom has had the most lasting influence on us. We are getting together with him later this week.

We had a scheduled meeting with Dr. K on Monday. Faina had had a rough week last week. The chemo is usually awful the first seven or eight days and then things settle down. It was not the case this last cycle and she was not feeling at all ok until the weekend. Faina suggested that rather than resume the chemo on Tuesday that we postpone it a week. Dr. K was enthusiastic about her taking a week off, thought it was a good idea.

Feeling better in all senses, we took in a movie (No Strings Attached). The following day Faina felt ready to eat and Margo fried up an egg. Faina made it disappear. This usually leads to a sort of hibernation-discomfort-digestion period, but all went well and an exceptionally uneventful hour followed. Later, we took a walk at Lake Elkhorn, enjoying particularly the pleasant weather and the antics of a flock of geese. A little later in the day, emboldened by the earlier gustatory experience, Faina wanted a piece of cake. Give her credit for her sense of adventure, but this did not go down well and she spent the rest of the evening regretting her ingestational assertiveness. Tomorrow's another day.

True Blood

When you then slaughter the ram, take its blood and place some of it on the right ear lobe of Aaron and his sons, as well as on their right thumbs and their right big toes. (Shemot 29:20)

It is interesting that this week's parsha has a reference to blood. It is describing the ceremony for consecrating the priests, Aaron, the high priest, and his sons. The ritual can be understood that a person should be a good listener, responsible for what they do, and thoughtful as they go about life's journey.

On Wednesday, Faina got a blood transfusion. She had been anemic for several weeks and the time came for a significant response to the low RBC (red blood cell) count. Even though her blood type is well documented, we had to go in the day before for a blood test. This is SOP as a mismatch is deadly.

The phlebotomist who did the test was, thankfully, patient and skillful. A vein did not appear with the first standard measures, but Agnes, obviously was not new to this line of work. A few taps at various points on the arm, a hot pack, cycles of squeezing the sponge ball, relaxing, another hot pack and, like a balloon being inflated, a healthy vein bulged to the surface. Even with the needle skillfully placed, the vial did not fill very quickly, but Agnes encouraged a recalcitrant circulatory system and finally an adequate sample was drawn.

The next day was the transfusion. We got to the hospital at 7:30 a.m. and everything proceeded smoothly. Two out of the three nurses working the ward were cheerful and friendly. Faina was being taken care of by the third. The hours passed fairly quickly, Faina burning through a double issue of the New Yorker and catching a few winks. I got started on Cleopatra. We had seen the author interviewed when we went to the Daily Show back in December. That feels like a lifetime ago. We also had a visitor. Larisa, a gastric cancer survivor who Faina has been in touch with for over a year, took time away from her lab work in the hospital to see how we were doing. It was a pleasant distraction.

Faina has now had two significantly better days. Better energy and even a semblance of an appetite. She had some mashed potatoes and a spoonful of caviar.

Shabbat Shalom

4 a.m.

Four in the morning
crapped out, yawning (Paul Simon)

Last week, Margo shared this clip with me "Rives on 4 a.m" (http://www.ted.com/talks/lang/eng/rives_on_4_a_m.html) It is an engaging exploration of this deadest hour in the dead of the night. Going beyond Rives, I now know that SAA NNE is 4 in the morning in Swahili. Mirabilis Jalapa is a variety of the 4 o'clock plant (its flower opens up nocturnally and closes diurnally) and when a phenomenon is called to your attention, you suddenly take notice of it as it appears and reappears. I'm now far more aware of how often I am awake at 4 a.m.

Faina woke me up last night at 4 a.m. She was in pain, congested, agitated, and despairing. We explored her evolving pharmacopoeia and one of the medications I had been reading about earlier in the day, hydroxyzine was my suggestion. Will Shortz would have noticed it for the same reason I did, having the name of a cookie and the letters XYZ consecutively in its name. It was also first synthesised in the year Faina and I were born. Above all, it is remarkably effective as an antihistamine, analgesic, and a sedative. Everything we needed all in a 20 mg package. Here is what it looks like chemically: 

I held Faina in my arms, helping her calm down, giving the meds some time. On the clock, I saw 4:32, 4:44 and 4:56. After about an hour she drifted off to sleep.

At that point, I was quite wired. I did a load of laundry, answered a few emails, paid a bill, made a donation, and, realizing that I would not likely be waking up before 8:00, took out the garbage. It was a beautiful moonless night. The storm clouds were gone and the stars shone bright. It was easy to spot Ursa Major heading up the driveway and Orion on the way back. It is delightfully quiet at that hour, like being that first astronaut to step out of the LEM, "That's one small step ... " At this point it was game on. I brewed a cup of coffee, fed the cats and checked to see if Jamie was up. She wasn't, but she sounded worse than she did hours ago at bedtime, so I let her go back to sleep and take a sick day.

Later in the day, I took Faina to HoCo General for a blood test. She is getting a transfusion tomorrow, so it was necessary to identify her blood type. Unsurprisingly, it was hard to get a vein. Fortunately, the phlebotomist had patience, skill, and a few tricks up her sleeve. As Faina was mentally preparing herself to be subject to physical abuse, the procedure proved to be minimally painful. Immediately afterward, the room was filled with a collective sigh of relief. Faina made sure to communicate to the woman that her ability to rise to a challenge was recognized. We made our way to the car, barely feeling the 32 degree chill or the 40 MPH winds.

Tahrir Square

We have been following events in Egypt closely. We've spoken to nervous friends and family in Israel, checked out a variety of news outlets including Israeli and Russian sources, and pored over our morning papers. Today, what seemed to be a peaceful "people power" revolution turned violent with rocks, Molotov cocktails, fists and bullets flying. All of this paralleled our day which dawned with relative tranquility.

Faina was in good spirits in the AM. Other than an uncomfortable tingling in her fingers, she woke up with good energy, replied to a few emails from patients, enjoyed watching a few deer passing through our back yard, and became hungry for ленивые вареники (Lazy Dumplings), Russian comfort food. We had a regular cooking show project going on in our kitchen, guided by a quick consult with Tatiana's mom, Lydia. Shortly afterwards, Faina tuned into a favorite soap opera and talked of us making a trip to the hardware store a little later.

Late afternoon was all Tahrir Square. Agitated, nervous, and an unstoppable heartburn came back with a vengeance. She took as many pharmaceuticals as she could, pushing the limits a little, with only temporary relief, at best. This went on for hours. She did not find quiet or sleep until, as we were being told by a slightly battered Anderson Cooper, dawn was breaking in Cairo.

I hope tomorrow is a better day for both the people of the Nile Valley and us of the Maryland Piedmont.

It's About Time

We are at the oncology center. The sound system is schizophrenic, sometimes playing pure muzak, occasionally light pop tunes, but at the moment it is some dreamy new age vibe. Women patients outnumber the men, seven to two. Today is the first day of a new chemo cycle. Usually, Faina starts to feel the discomfort within the first few hours, generally a painful tingling in the finger. It builds over the first few days, peaks, and leaves her feeling "toxic" or "poisoned" for about a week. I look forward to that second week, especially the last days when Faina's energy level is higher. We did not get much of a bump last week, but she did enjoy a drive and running a few errands. She did bravely venture into direct nutrition, some yogurt, chicken soup, oatmeal, rice. Visualize about two tablespoons as a meal every two hours. She eats and then sits for at least 30 minutes letting it work its way, uncomfortably, through her system. Understood as reward vs. punishment, it is a punishing experience, but Faina hopes to get off of TPN some day and so she endures.

The time we spend together is precious. Looking at the hours that we are in doctors' offices, in clinics, in traffic, reading, watching TV-movies-news, reading, and in quiet repose, I wonder about this concept we have for fixing events in sequence and duration.

The first place I like to turn to for a point of reference is in sacred text, pursuing a Biblical view of time. Obstacles are translation/interpretation and our cultural understanding of this construct. While one translation renders a phrase in Bereshit/Genesis 1:14 as "sacred times,"a more faithful reading is more specific "festivals, days, and years." A verse appearing, a few chapters later, is regularly related as, "In the course of time" (4:3). A more accurate reading is "It was the end of days" (in the sense of the end of an era). One other example calls Noah (6:9) "blameless in his time" while a more literal understanding is "faultless in his generation" (6:9). One of the last mentions of "time" in the Torah, "a long time" (Devarim 20:19) is really "yamim rabbim" (many days). This gives a sense that the term "time"  is casually and imprecisely used to to stand for anything ranging, based on these examples, from a milestone monent, the period of one revolution of the earth, on to many revolutions of the sun. My account covers "time" based on those terms, but really how could it not, so it is time to find another sponsor.

My favorite philosopher, Martin Heidegger writes, "The Being of time is the 'now'." This is how time is best experienced, in the immediate moment. He goes on to say that "'now' ... is-no-longer ... (and) ...is-not-yet." This strikes me as the great challenge of all-time and especially era in which we live. Do we diminish the "now" with the imposition of the past and the future? Does our hyperkinetic 21st century society make living in the "now" an old fashioned artifact or does it just add degrees of difficulty to achieving that state of Being? I'll take this as a challenge to really mean it when I say, "I'm here for you." It is a V'Ahavta'esque "B'chol livavcha, u'vchol nafshicha, u'vchol m'odecha" (with all your heart, with all your soul, and with all your might) being present.

Time to go. There is tea to be brewed, a hand to hold, and a presence to be experienced.