Never going to keep me down

I get knocked down
But I get up again
You're never going to keep me down.
Tubthumping (by Chumbawamba)

When naturalist and science writer Steven Jay Gould was five years old his father took him to the Museum of Natural History, on the itinerary, the skeleton of a twenty-foot tall tyrannosaurus rex. Gould writes, "As we stood in front of the beast a man sneezed; I gulped and prepared to say my Shema Yisrael [last prayer]. But the great animal stood immobile in all its bony grandeur, and as we left, I announced that I would be a paleontologist when I grew up."

The Shema is our traditional prayer for when dying is immanent. When the doctor says, "It's cancer," you are facing a protracted struggle, not the quick strike of a giant animal. In Faina's case, it is like getting knocked down, but not knocked out. She has been getting up, making her days meaningful, just about every flick of the calendar, since the doctor's call (yes, she found out by phone) on April 13th, the first knock down. She pines for returning to her office and resuming her practice. She occasionally despairs of her life on hold. Through it all, nothing keeps her down.

Things have been much better lately, the knock downs farther apart. Last Tuesday, she was told she can start drinking and the varieties of herbal tea in our cupboard have grown. She called me at work, two days later, when the flow from the fistula went from near zero to about 40 milliliters over the span of about an hour. Since that episode it has gone back to zero, so drink up. A few days ago, she even took a sip of my IPA while watching the Phillies make their way back to the World Series.

Today, a big step. Real solid food. Ever true to her Leningrad upbringing, stepping up to the plate, she did the mashed potato. Now we watch, wait, and listen as the tuber makes its way through her intestinal tract. This can be a milestone, starting the transition from TPN to gaining nutrition, for the most part, the old-fashioned way, fork and knife in hand. We'll have an order of tyrannosaurus burgers please!


Warning! This song was number 12 on Rolling Stone's list of the 20 Most Annoying Songs.

Tubthumping

Hatov V'Hameitiv

The news yesterday could not have been much better. Dr. Schulick took a look at the quickly approaching single digit numbers on the output from the fistula, and the healthy looking, progressively less open incision, liked what he saw, and told us that there is an 80% chance that the fistula will heal on its own and there will be no need for another surgery. He went on to say we will not have to come back to Hopkins for a month and that we will report in by phone, twice a week.

Faina's fear of a possible kink in the intestines was allayed by the evidence that from end to end the GI tract is fully functioning. To really put the system to the test, Dr. S said Faina could start drinking two cups of liquid a day. We have to phone in results on fistula output on Friday, but by the end of next week the possibility is that Faina will be able to start eating real food.

We left Hopkins turning left on N. Caroline Avenue and not stopping until we reached Fells Point. We took a stroll around one of the "City of Neighborhoods" original neighborhoods, enjoying the real and metaphorical sunshine, and Faina ordering her first cup of tea since early August.

Baruch Ata Adonai Eloheinu Melech HaOlam HaTov V'Hameitiv
Praised are You, Adonai, Ruler of the Universe the Good and the Doer of Good.

Tossing and Turning All Night

Faina often wakes up in the middle of the night. The two leading causes are nightmares, which have not been in the least bit unusual since last April, and the TPN alarm going off if there is a pinch in the line. Last night featured both.

The nightmares she rarely shares with me and at 2:00 am I really wasn't in a mood to probe. Two hours earlier or four hours later my curiosity is in fuller bloom. They are usually stories of death and destruction, pain and suffering, and populated with people near and dear to her.

The TPN alarm is another matter. With the usual tossing and turning in her sleep the IV line gets pinched. In particular, its not good for the pancreas to have the nutrition suddenly cut off, but generally it would be a problem just to wake up with the feeding cycle incomplete. This wake up call is a regular occurrence and I usually get it straightened out before Faina even wakes up.

Today is finally the Dr. Schulick appointment we have been anxiously awaiting for two weeks. It could be hugely informative or it could be a total letdown. The possibility is that Faina will have regained enough of her health to be ready for a third surgery to close off the fistula and that Dr. S will advise proceeding with that procedure, that our patience has been rewarded and the fistula is closing off of its own accord, or that we'll all have to wait another week or two.

Time to go play, Good Morning Baltimore.

Posting Numbers

The cool temperatures that have settled over the area put a chill on Faina's interest in a daily stroll. She did take to the road and did a little clothes shopping. A stop at the local supermarket yielded a box of L'oreal Excellence and a cover-up of Faina's salt and pepper follicles.

It was a strange feeling having Tuesday morning come and not having to head up to Hopkins. This non-appointment served as a punctuation mark on this wait-and-see period and we are somewhat looking forward to the October 20th date with Dr. Schulick.

In the meantime, some interesting numbers:

We keep a daily log on the output from the fistula. The numbers on that have dropped from having been in the 500-600 ml range about a month ago to the double digit range, the past few days going under 50 ml. Could this mean the fistula is actually closing up on its own? The chances were 50-50 according to Dr. S. so we are hopeful that that is the case. We are getting closer to an answer to that penultimate question, surgery or natural healing and the more prosaic, corollary question, real food or TPN/IV nutrition.

Now for some big, rising numbers reported by The Johns Hopkins Hospital with the all caps qualifier "THIS IS NOT A BILL": Total Amount $106,244.76. The statement also says "Please note that the charges for services provided by a physician are not included in the total hospital charges." That particular number, still rising like the counter on a pinball machine, with the ball (Faina) bouncing off bumpers (doctors charges), dropping into holes (tests), cruising over rollovers (pharmacy expenses), and staying in play with flippers (our trusty automobile), some gentle nudging, and the ever welcome "Extra Ball' (the next day). A most daunting medical mystery is how these bills get paid.

This narrative has played out for us amidst the backdrop of a national health care debate. What is obvious is that in any system all of this medical care has an economic cost. The tests, pharmaceuticals, nurses, technicians, physicians and the administrative apparatus that facilitates this system is a percentage of the GNP. Some of the questions provoked are the relationship of the individual to the greater society, the respective responsibility of one to the other, and respect for the dignity and value of the individual. Taken to an extreme, should we have amassed a $200,000 fund for this contingency? Not having done that, would anything resembling a bank give a loan in such a situation? (Is maxing out a credit card a back door route to this end?) Stepping aside from those alternatives, what choices would any of us want to see, for ourselves, for the family next door, for an individual ten postal codes away? What do the choices we make as a society regarding health care say about our appreciation for collective responsibility? What is health insurance? It is a pooled bet that we statistically know some will need to draw on and others won't. Questions become who is in the pool, what does membership cost, and what are the club benefits? Huge questions.

At the risk of an implied partisanship:

There is not a liberal America and a conservative America -- there is the United States of America. There is not a Black America and a White America and Latino America and Asian America -- there’s the United States of America. (Obama Convention speech 2004)

I would add, there is not a "young invincible" America and a medically challenged America --there is the United States of America.

See You In Two Weeks

Last Tuesday's regular appointment with Dr. Schulick was more of a "Keep Me Posted" review than anything dramatic other than Dr. S saying I won't need to see you for two weeks. When he came in, he said you look great. You look healthier, stronger, more energetic. He looked at the two openings and commented on how well the upper wound was healing. The output from the fistula has been steadily decreasing, but he didn't take that as particularly significant. When asked about the potential for a third surgery, he advised we'll have to be patient. Officially we are in "wait and see" mode and should have a better sense of the when and where of a next step at the October 20th appointment. This whole visit took less than five minutes and Dr. S. was not accompanied by his usual entourage.

Upon his exit, the nurses, playing the part of the ancient Biblical m'turgemon (translator/interpreter), said, you've received the, "you're looking good ... healing well ... be patient ... hang in there ... (and) ... let things develop at their own pace ... Dr. Schulick Pep Talk."

Faina is feeling a lot better. She has been spending more time with visitors and taking longer walks. We have explored a few local trails and, following brother Russell's advice, headed to the Pig Tail Trail. That turned out to be well timed for time of day, temperature, and moisture as there were mushrooms in great abundance. Faina the Mycophagist pointed out the good and bad ones and took home a few prizes that she dried and put away for another day, when her nutrition will be the more traditional method, not TPN. (Indeed, real food is still on her mind.)

Our sukka was blown to smithereens twice this year. Kohelet, like everything else in Torah and tefillah it seems, takes on greater meaning this year, both for what is going on in our lives and in paralleling world events:

There is a time for everything, and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace. (Kohelet 3: 1-8)

Radiating Charm

Tuesday's Hopkins appointment was delightful, really, bordering on a social call. Dr. Schulick was away and Faina was in the care of nurses. Ms. Potter changed the ostomy bag. Ms. Coleman took care of everything else. Throughout they kept up a running narrative on the surgical department; Dr. Schulick; Dr. Cameron, the chief of the surgical department; the progression from medical school student through fellowship and beyond; and what it is like to work at Hopkins. They convey a passionate respect and admiration for the physicians, a love for the institution, the culture of collegiality, and a delicious sense of rivalry with Memorial Sloan-Kettering.

A Talmudic verse says, "It is not proper to stucco or decorate or paint [our houses at the present time]" (Baba Batra 60b). The "present time" was just after the disasterous destruction of the Temple. This verse is respected in the tradition of not completely painting a room or house, leaving a bare spot. There is also a tradition of women not being held to time based obligations because they are naturally spiritual. What am I getting at?

This all fits an exceedingly non-traditionally observant, yet plenty spiritual Faina. Upon our return from Hopkins she went down to the basement and dug out painting supplies. I pulled out the ladder. By the time I got back from school she had masked a foyer and taken a trip to the local paint store. On Wednesday she put down a first coat. On Thursday she applied a second coat (In this week after Yom Kippur, you could say she "Re-painted."). Besides being a clear sign of re-newed energy, revived spirit, and optimism, it fits as a grand step forward, and upward (let's take the ladder as a literal and figurative symbol) after a disasterous past few months. Call it a proper present time to paint.

Sanhedrin 14a says of a great person, "Neither paint, nor rouge, nor (hair) dye yet radiating charm." Faina has never stopped radiating charm. Now she is looking toward the future: today painting, perhaps, but not at all needed, rouge and hair dye tomorrow.

Chag Sameach!