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).