Who shall I say is calling?

Contrary to expectations, Yom Kippur did not quite live down to expectations. The first reading for Kol Nidrei is one of my favorite passages:

Behold I set before you this day
life and death, blessing and curse.
Choose life, that you and your children may live. (Devarim 30:15, 19)

This is pretty much the first message anyone with cancer is told, choose life, don't give in to despair, you can beat this thing.

Unetanneh Tokef came and went. Such references to God as "Master of life and death," and phrasings "seal us in the Book of Life,"and "Seal our fate in the Book of Life" had poignancy they never held before. Occasionaly these passages provoked self-reflection and at times led me to think of my place in the congregation (Beth Shalom, Columbia) among people who did not know me or my family's situation. To me, it gave added nuance to the readings about our transgressions, our "Missing the Mark" (we gossip ... we insult ... we quarrel ... we are unkind). It made me think of how we treat others, often in complete ignorance of their personal circumstances. I have found this whole experience since April a humbling, sackcloth and ashes narrative. As for Yom Kippur, it was probably the most meaningful one.

Faina slept far later on Yom Kippur morning. She woke up with a decent energy level. In the afternoon we took a walk around Lake Elkhorn. Very shortly after we got inside the rains came pouring down. Tuesday morning will be a trip to Hopkins. Just a check in with the nurses.


Below - Leonard Cohen's version of Unetaneh Tokef, Who By Fire.

Be The Light

Faina has pretty much settled into a quiet routine. A few walks a day, maybe a visitor, a movie, and some news. Empty the ostomy bag, record the amount drained, change the wound bandage, and the 12 hours of TPN. That she misses eating is a steady refrain. Her frustration level is fed by reflecting on what was supposed to be a surgery and up to a week-and-a-half in the hospital that turned into two surgeries, a month in the hospital and a high likelihood of a third surgery in early November.

Now we are coming toward the close of the Ten Days of Awe. I have always felt that prayers and the parsha strike you different over the course of a year and over a lifetime. For example, the daily prayer for refuah shlaymah (a full return to health) has taken on an unexplored level of significance to me in the last few months. It is not uncommon to be uncomfortable with some aspects of our tradition and to find a way to make peace with objectionable language. I don't say part of Birkat, I'm glad I've never been a part of a congregation that makes a show of the second verse of the Aleinu, and Beth El included the Matriarchs in the Avot before it was formally in the siddur (and then we were among the first congregations to change over from the old to the new Siddur Sim Shalom). I have to admit to a whole new level of discomfort with some High Holy Days traditions this year. "Hatimah Tovah," may you be inscribed (in The Book of Life) just does not square with my concept of God. Taken a step further the piyyut Unetanah Tokef further ramps up the level of theological challenge:

On Rosh Hashanah it is inscribed,
And on Yom Kippur it is sealed.
How many shall pass away and how many shall be born,
Who shall live and who shall die,
Who shall reach the end of his days and who shall not,
Who shall perish by water and who by fire,
Who by sword and who by wild beast.

I guess this is the year that this prayer and that traditional blessing rings hugely different, stimulates a never tested nerve. There is too much of great beauty and too much that the world needs in our tradition to throw the bracha out with the klalla bathwater. For the first time in decades Faina won't be up to joining me for Kol Nidrei. I'm sure I will cringe at times, but I'll be refocused by some of my favorite verses, Ki Hine KaChomer, Ashamnu, Vidui, Al Het and by this charge in the Haftarah:

This is the kind of fast that I desire:
Unlock the shackles put on by wicked power!
Untie the ropes of the yoke!
Let the oppressed go free,
And break off every yoke!
Share your bread with the hungry.
Bring the poor, the outcasts, to your house.
When you see them naked, clothe them;
And from your own flesh and blood don't hide yourself.
Then your light will burst through like the dawn.

To all of my friends, colleagues, acquaintances, and the many others with whom I come in contact: If I have done anything to hurt your feelings or offend you in any way, I hope you will forgive me.

Still Riding the Roller Coaster

Yesterday started off well. The weather was pleasant and we took a long walk. Faina had felt strong and positive enough the day before that she took the car out for a drive; She even filled the tank with gas. She was excited to have a friend coming by for a visit around noon.

By the end of the day, she was saying, "My life is Hell." She was despairing over whether she would regain her health, focusing on the fact that she has not eaten since August 10th and wondering when she would eat again. She returned to the gastrectomy which was supposed to be a week in the hospital, but turned into a month. "Is there no end to this?" became her prevailing mood.

Still, she maintains a focus on Margo and Jamie; Margo's upcoming LSATs and internship and Jamie's homework assignments.


Well, while I’m here I’ll do the work-and what’s the work?
To ease the pain of living. (“Memory Gardens” – Allen Ginsberg)

Hopkins Quick Visit

Some really good signs of progress today at Hopkins. Dr. Schulick gave a look at the two open incisions and was exceptionally positive about the healing of the upper incision, pronouncing the tissue "granulated." Once again there was some back and forth between Dr. S. and Dr. Cunningham as to whether to replace the ostomy bag or pack the wound with gauze and bandage it. The later choice won out. I really hope this works. Faina has needed attention at about 3:00 am, the magic hour, for the past four nights, with the ostomy bag leaking and needing to be cleaned up, re-sealed, and bandaged. Somehow, come morning, she does not even recall the episode. My out-of-the-ordinary third cup of coffee before noon is added testimony to my nocturnal ministrations.

After Dr. S. pronounced the still closed part of the incision to have healed sufficiently, Dr. C. removed Faina's last three staples. He also removed some more necrotic tissue (debridement is the technical term). Faina is still dehydrated, so she will be getting a liter of saline solution for the next few days. Dr. S. said, "Her kidneys can handle it." We were expecting to return to Hopkins on Thursday, but Dr. S. decided a weekly examination would be all that is necessary. Nurse Potter put a new ostomy bag on the lower incision and we were pretty much good to go.

Faina was pretty wiped out from all the poking and probing and conked out a few minutes after we got home. At this point, Dr. S. is pretty casual about talking about a third surgery, to close up the fistula, so that future chapter, in about five weeks, is a virtual certainty.

Just Another Day at the (Doctor's) Office

Thursday picked up where Tuesday left off. Every so often there is an element of Keystone Cops to this story. On Tuesday we were told to go to the 4th floor of Weinberg and Dr. Cunningham would examine Faina. Nurse Potter, commented that there wasn't an examination room on 4C, but the assembled doctors apparently thought an empty bed would be available. Well it didn't work out that way and after about 30 minutes of waiting we had to truck downstairs, through the underground corridor into the Outpatient Center and up to the 8th floor. We waited there about 45 minutes before Dr. C. and his entourage arrived and they began the examination.

In the end, they removed a bit more necrotized fascia, identified a bit of intestine poking out, and returned Faina to using two ostomy bags. The upper incision opening will be given time to heal and it is progressing well In answer to one of the more pressing questions, a learned opinion was offered that the fistula is not likely to seal up on its own and that a third surgical procedure will be necessary in about six weeks. We will be visiting Hopkins every Tuesday, and probably Thursdays as well. Our parting gift, we cooled our heels while Faina took on hydration, about two liters, a drop at a time.

Faina is increasingly anxious and frustrated. Mindless waiting, the examination room confusion, and the unanswered questions, are tests of her usually abundant patience. On the other hand she also has plenty of energy and enthusiasm. She is up and alert for hours at a time. Being untethered to pumps or bags most of the day she is up and around, taking regular walks, and finding ways to keep busy.

We wish everyone a Shannah Tovah V'Metuka. A year of health and happiness, blessings and peace.

Still Dripping, Percolating , and Leaking

The Good Ship Faina is still listing a bit and will once again put into the port of Baltimore this morning. She comes in with a hold full of questions:

1. Do I have hypovolemia (low blood volume)?
2. How do you explain my still elevated pulse?
3. What are we waiting for and for how long are we waiting?
4. What tests are you considering to find the perforation in my intestine?
5. I am experiencing severe thirst. Can I drink small amounts? (and do you recommend Corona or Corona Light?)
6. I played hookey from the blood test on Tuesday. Did you realize I had a blood test the day before? If you still need it can you do it through the port or PICC line?
7. What sedatives can you prescribe to help with anxiety?
8. Can I use this Russian herbal medicine, Corvalol?

Let's see how this all goes.

Am I Really Watching This?

I thought I was really hot stuff this morning. First, I did all the end game work with Faina's TPN. That is, turning off the pump, doing the two saline flushes and the Heparin flush. Scientifically, this last step is amazing, but not worth reporting deeper than to say it is what keeps the PICC line from clogging. I even replaced Faina's ostomy bag for the first time. Oh, I was really firing on all eight cylinders.

We ( I say "We" because this really is a team effort, keep that in mind if anyone you know is dealing with cancer) had a 10:30 appointment with Dr. Schulick at Hopkins. I got the best parking space of all time, ninth from the entrance, without holding anyone up while waiting for the person to pull out and drive off.

This appointment is going to be a weekly thing for God knows when (I'm hoping for some insight into that this weekend). Well, the appointment started off pretty weird and got progressively more crazy by the second. About 15 ticks into the appointment the ostomy bags were gone, so I'm staring into about 1" below Faina's surface. I like looking at her soul through her dark brown eyes. This is different and the aroma is not Channel #5, but more like Gastro-Intestinal #2. When Dr. Cunningham, a brilliant surgical fellow, and Dr. Schulick, one of those surgeons who makes Hopkins Hopkins, start exploring her insides I am treated to front row seats into the surgical healing process. Differences of medical opinion are debated as necrotic fascia is removed, stitches come out, her lower incision is opened up so it will become the primary site of her still percolating fistula, and a discovery, the exit site of her fistula. At one point Dr. Kosravi tells me that typically by now any spouses present have fainted, Dr. Schulick has asked me for the second time if I'm ok with this. I've now seen Lidocaine injections, skin cut with a scissors, about half a cup of necrotic tissue being removed, and watched Faina lie on the table as she is operated on eyes, mostly, wide open, barely even wincing. I really don't know who is the more incredible person in the room, the three surgeons, the nurse or Faina, but I feel honored to be among enough courage and intellectual candlepower to lift a space shuttle into orbit.

Afterwards, all Faina could talk about was a Corona. She can't eat yet and is allowed about enough water to knock down a pill. We made a stop at a Federal Hill/Cross Street pub. Here's to a refuah shlaymah (a speedy-full recovery).

Great News

Dr. Koutrelakos, Faina's oncologist, told us today that she will not have to undergo chemotherapy. The primary source of the cancer, her stomach, is now in some pathologist's lab, the lymph nodes tested negative, and her liver is clean. Under any circumstances the ECF regimen would have been difficult. The cumulative effect would have made cycles 4, 5, and 6 a particularly tough uphill climb. I feel a little like my friend David's father felt in August 1945 when after fighting in Europe in Patton's army, he was at a port in Italy, about to be shipped out to the South Pacific, when he got word that the Japanese surrendered and he would be going home.

We still have to keep an eye on the fistula. Draining the ostomy bags is a two-three times a day exercise and noting the outputs reminds me of an 11th grade chemistry experiment. Dr. Schulick said that the chances of it closing on its own were 50:50. Another doctor said it was unlikely to close on its own and to get used to the idea of a further surgical procedure in the not-too-distant future.

All in all Faina's mood is much improved. She talked to Maya who had just gotten back to her apartment in Haifa. We took two good long walks around the neighborhood, enjoying another glorious day of pleasant sunshine and cool breezes. She arranged the flowers Amy and Charlie sent over in one of her favorite vases. At this hour the nutrition pump is going, a fresh Fentanyl patch and Ambien are working their magic, and I am staring at a $17,276.39 medical bill.

To Be Continued ...

Day One at Home

Faina said her spirits are 100% better since coming home. She took two good walks around the neighborhood and thoroughly enjoyed the incredible weather.

The morning was our first foray into closing down the TPN, nutrition package. In the afternoon was our first, with a clearly fantastic example of adult ADHD, Nurse Lisa looking over my shoulder, as we added in the secret ingredients. She gave me a heads up that when you pull off the cap from the syringe pull it like you want to clear the end by about two feet, because there is a natural reaction to jerk back. No sticks, but I could feel the tendency to return back with the cap.

Faina's sister has been spending the last few weeks with us, helping out. She flew over from Israel and had booked her flight well before the August 12th surgery with the intention of helping Faina around the house after she had been discharged. The fickle finger of fate had other plans, but Maya was a great help in the hospital, spending many night shifts at Hopkins. Maya is 15 years older than Faina and had to graciously endure well intended assumptions that she was Faina's mother. In the East Baltimore neighborhood surrounding Hopkins, that not so fantastic a concept. Adding to this bit of angst was that the sisters had to concoct a ruse for Maya to come to the States. Their mother turned 90 at the beginning of August and, by everyone's judgment, Faina's health crisis would be best kept on the down low. Mom lives in Haifa and they called her regularly, maintaining the story line that Maya came for Faina to do some dental work on her.

At this moment in time, Maya is a few hours into her flight home. Thank you for all of your help, Maya.

Home At Last

Today marched along without a hitch. It is poetic that the last connection severed was for hydration that fed through her (medi)port. Ergo, in order to be discharged she had to be deported.

Later in the afternoon Nurse Lisa came to our house to explain how to do the TPN (IV nutrition package). There is sort of a base package and a variety of ingredients to add. Mixing, attaching to the pump, and getting started is about a 15 step process. The whole feeding cycle takes about 12 hours so Faina will be taking in nutrition all night. What does she miss the most? She would love to have a drink of water, from a glass, the old-fashioned way.

Emptying the ostomy bags in the comfort of our own bathroom bordered on the joyous. Faina is dressed in her own comfortable clothes enjoying these first steps toward normalcy. She spent a few minutes on the deck enjoying the flowers, trees, and fresh air. She fell asleep watching the first set of Serena Williams and Kim Clijsters battling it out at the US Open.

On our way out the door, the residents warmly said, "We'll see you in clinics." This Tuesday, and every Tuesday for at least a few months, we'll be seeing Dr. Schulick and his retinue. Clearly, this narrative has plenty of chapters to be told. For now, however, all is right with the world.

Maybe Tomorrow

Just a really short note: It looks like Faina is going to be sent home from Hopkins tomorrow.

Ken yehi ratzon

Like Watching Grass Grow

On Thursday Nurse Kathleen taught us how to put in place a second kind of ostomy bag. It is larger, since the now wide open incision is a larger opening than the other opening. With this new piece of equipment in place an its clear front with a zip lock opening you can look right into this open chasm in the middle of Faina's chest. Nurse Kathleen cheerfully goes about her work narrating as she moves along, with a countenance much like Julia Child, have no fear, you can do this, and working around any obstacle.

Asked if this bacteria rich fluid percolating out could cause sepsis, she said we would know if that was going on. Faina would be running a fever, there would be swelling and sensitivity to being probed.

Faina is very much in a low energy state, not even energetic enough to be depressed. Her patience is remarkable. And so we wait for the almost imperceptible progress to move along to a fuzzy point at which she can come home to lick her wounds. At this point, it is much like watching grass grow.

Let's Give This A Few More Days

This morning Dr. Schulick gave Faina a close examination and decided it is not yet time to send her home. The wound at the top of the incision, sternum end, still looks really soupy and now we have a new explanation for why. The bile, those juices that have been percolating from Faina's intestines, exiting from the bottom of the incision, near the navel, and being caught by the ostomy bag, carved a new route, up the line of the incision and out the top. In the process of this procedure, the good doctor removed a few more stitches so now the incision is open by about 2-3 inches (or 5-7.5 cm).

Faina took this all remarkably well. The coals of her otherwise go-go-go, do-it-now temperament have been banked, at least for now. Her spirits are remarkably good. She is still up and walking around as much as she can. Dr. Schulick ordered an anti-depression pill and Faina opted to leave the blue and white capsules in the little cup on her table, showing absolutely no interest in the medication.

Hopkins is the original teaching hospital, a purpose that is central to its mission, and this makes for an engaging environment and a different level of interaction with just about every level of staff. Nurse Kathleen gave us our workshop in ostomy bag maintenance, in anticipation of being discharged. She is a wonderful teacher and showed us a few tricks that an experienced nurse figures out to be efficient and effective. The aroma from the intestinal fluids was a challenge to the olfactory senses, but that's just the price of admission. I look forward to doing this for Faina at home, hopefully soon.

Chazak V'Amatz

Pre-Discharge Training

Tuesday's news is that Faina will be discharged on Wednesday.
1) She still has the ostomy bag over the fistula.
2) She gets her nutrition through a PICC line.
3) Her pain meds, fentanyl, are administered on a 72 hour time release patch.
4) She has an open wound that is still draining at the top of her original surgical incision.
Otherwise, everything is honkey dory.

It took a team of three nurses to give Faina and me lessons in home health care. Do you really want to ever hear that they are bringing in Nancy, the "Wound Specialist?" Kerry covered everything else. Lori oversaw the process. A home health care nurse will stop by, but we will pretty quickly be essentially on our own for these basics. We will be coming up to Hopkins every week to check in with Dr. Schulick.

Faina is pretty happy to be discharged and a little overwhelmed by the amount of responsibility we will be taking on. I am ready to take this next step. Six years of medical school, an MS in pharmacology, and a DDS and she is edgy. I have degrees in education and Jewish studies. In which harbor would you drop anchor in this particular storm?

The theme of the day, one of my favorite Biblical exhortations, Hazak Ve'Ematz - Be strong and of good courage (Yehoshua 10:23).

Labor Day

The long slow holiday weekend fit in well with the overall prescription for Faina at this juncture, give things time to heal. She is now off the morphine altogether, no basal dose, no demand dose, not even an IV hookup.

Over the weekend she seemed to be regaining some strength. In the early afternoon we ventured down to the lobby and out the door! It was Faina's first breath of outdoor air since about 5:15 am on August 12th. On our second outing, about an hour later, we went down to the interstection at Broadway, taking in a glance at the cobblestoned street and the original hospital building, ironically named after John Shaw Billings. Jamie suggested jokingly we head down to Fell's Point. Later in the day Faina took a third trip outside. She greatly enjoyed the cool breeze, sunshine, and fresh air.

There is a chance that she will be discharged this week and a home healthcare nurse will take care of the few things that have to be attended to regularly. She is still getting her hydration and nutrition intravenously, the compazine shots to counter the nausea that accompanies the octreatide injection (this is to help advance the healing of the fistula), the heparin, and the insulin.

It was a good weekend and a milestone Labor Day worth remembering.

Signs of Progress

Faina is still in a low energy state, but she was up for more walking today than she has been since early last week. She also pretty much slept through the night Friday and Saturday.

She also is no longer getting the morphine drip, either the basal dose or the demand dose. This has been replaced by a fentantyl patch. It is still pain medication, but it means being hooked up to one less tube. The tube that went into her pelvis is out, too, and she felt good to be relieved of that. She is also off the antibiotic drip. At this point the IV lines are for administering medications, hydration and nutrition.

The fistula continues to command medical attention. Dr. Schulick said that the output has been decreasing. He is optimistic that it will close up of its own accord.

Once again, today, home healthcare was brought up. We even got a pamphlet. We'll see how serious Dr. Schulick is about this or if it is hospital staff being a little premature in their estimations. It would not be the first time that has happened. They can't even do the GI series they have been at the edge of their seats waiting for since some of the barium from the last effort seems destined to take up permanent residence in Faina's intestines. Lots of experiences to look forward to.

Jamie came by to see Faina today. It has been several days and she clearly misses her mother. We have been lucky to have some great friends helping to keep Jamie occupied. Starting Tuesday, that job goes to her English teacher, her math teacher, her Spanish teacher ...

Excruciating Pain

It is strange to see nurses pleased to see a patient experiencing level eight, sharp pain, but that was the reaction earlier today. No they are not sick individuals. They took this as a sign of intestinal activity, gas and all that implies. Positive signs.

They also gave Faina a fentanyl (pain killer) patch and will take her off the morphine drip later in the day.

The fistula still leaks, an early afternoon X-ray showed that the barium still resides in the intestines so a CT scan is still over the horizon, and progress is slow. Faina still gets up and walks around, but her energy level is lower than it was a week ago. Put in some perspective - These complications are after an all clear on the cancer, so in the big picture, this is more like the Battle of the Bulge than D-Day. We hope it is, "Onward to Berlin!

Shabbat Shalom!

Drowsy, Tired, and Sleepwalking

Yesterday Faina stopped taking the antibiotics. Her white blood cell count was in the satisfactory range.

Two nights ago they gave Faina Ambien to help her sleep and that helped tremendously. There was a bit of a zombie effect as she got up and walked around a few times in the middle of the night, sort of sleepwalking. Last night they gave her Benadryl instead.

They adjusted her nutrition infusion. Keeping her on a 24 drip is hard work for the kidneys so two days ago they adjusted her to 16 hours, just a speedier feed, and then yesterday to 12 hours. The IV tubes are not what one typically thinks of as life support, but that is how Faina is getting her hydration and nutrition.

Going home anytime soon is no longer being discussed. We are still waiting for the fistula (the little hole that couldn't) to close. They can't even do a fresh CT scan because about 25% of the barium from the CT scan from over a week ago is still sitting in Faina's intestines.

I'll try to weigh in later today with a fresh update.

The Third Law of Physics

Until about a week ago the daily question was, "Did you pass gas?" An awakening GI tract was our hope. Now we want a quiet GI tract to let the little hole (wherever it is) close up. Yesterday's CT scan didn't reveal anything new particularly the location of little fistula. Word is that Faina could be discharged with this unresolved and a possible third surgery some time down the road.

It was a day of less than optimal blood levels, high sugar (so get insulin shots), high white blood cells (must be fighting an infection, so take Zosyn), and low hemoglobin (keeping an eye on that).

What Faina was not passing was water, so a catheter was put in. This made her uncomfortable all day, but it was doing it's job. The nurses checked the Foley in late afternoon and found it was not in the bladder any more, more like the ureter, and began preparing to put in another catheter, but decided not to, calculating the risk of infection vs. the probability of her UT strightening itself out.

Message from the Department of You Have to Keep an Eye out for these Guys: Faina met with a doctor from the pain management team. She had her goal, a decent night's sleep, he had his questions to figure out the proper course. Everything copacetic, so far. A decision was agreed on, leave the morphine base level as is, lower the demand frequency and dosage, and take Benadryl before going to sleep. It all sounded reasonable, but then nurse Kerry, who would get Florence Nightingale's seal of approval and has helped Faina through some rough days, appears with a cartridge of Fentanyl, the pain killer we had just told the doctor had been the first pain killer prescribed (weeks ago) and was ineffective. Dr. Pain Management just got confused, but the surgical team got that matter straightened out fast.

There was some buzz of sending Faina home with home health care. One of the challenges will be nutrition, but she would continue, for now, to drink it in intravenously. This post-gastrectomy period (today marks three-weeks) has become an exercize in the third law of physics, for every action, there is an equal and opposite reaction.

Here I Am, Trying to Stay Calm

Faina says that she is a "Zombie by day because she is not sleeping at night." On Monday she was first visited by Dr. Cunningham who told her that this fistula (the slow leak) might be one of those things that is with her the rest of her life. Later, Dr. Schulick came by with a contrary, more optimistic view and said, "You are my number one priority.... We are going to fix you." He ordered up a series of injections which Faina said, "Hurt like Hell," burned, and made her nauseous. The idea is to dry up the moisture in her GI tract and let the hole seal. She also started getting insulin. The sugar level in her nutrition package is high and according to the nurses, "We expected your sugar level to go up days ago." She has also had high blood pressure. Faina the fighter, tells me "Here I am, trying to stay calm."

Was it good cop, bad cop? Doubtful. Dr. Schulick is really the authority and we've seen this sort of thing at Hopkins for decades; both Margo and Jamie were born there under less than ideal circumstances. He did not become Chief of the Cameron Division of Surgical Oncology purely based on his charm and good looks, not to say he is lacking in either.

Faina is scheduled for another trip to radiology this morning. We'll see what new adventures today brings.