Faina is back in Israel visiting with family and friends. She is still somewhat surrounded by physicians. Some of her classmates from the Leningrad Pediatric Medical Institute made aliyah and continued their careers in our historic homeland. She also has friends from her years at the Technion.
Above all, though, is family time. Mom is the main reason for going; brother and sister, of course; nephew Noam, no doubt; and two freshly minted nieces, the family's contribution to Israel's continued population growth, a new reason to visit.
Faina got to spend time with a branch of the family tree she rarely sees, adding another unique dimension to this visit. Faina, Igor, and Maya make for a fascinating set of siblings. Looking at today's map, the three were born in different countries. Maya, the oldest, was born in Siberia, Russia. Igor, the middle child, was born in the Soviet Zone of Berlin. Faina celebrated her first April Fools Day in Babrusk, Belorussia (White Russia). Maya also has a different father then her brother and sister. Maya's father gave his country the last full measure in the opening days of "The Great Patriotic War." Faina tagged along with Maya for a family event in the Tel Aviv area breaking bread with relatives she has not seen in decades.
Faina spent Shabbat in Tzfat. For most people, that holy "city" conjures associations with the Kabbalah, an historic battle in the War for Independence, a few historically significant synagogues, or the artists' colony. For Faina it is Fima and Olya, friends she thought she would never see again when she left the USSR and delights in checking in with when the opportunity presents itself. Their home has a spectacilar view of the Upper Galilee from which you can see the Golan and the northernmost tip of Lake Kinneret. Fima is not only a physician, but is also a TV personality known for his remarkable, insightful sense of humor. Despite the 24 hours of clouds, cold, and rain, Faina sounded as pleased as if she was sipping margaritas on a sun drenched Caribbean beach. Fima is a one man festival of lights and Olya is hardly a lesser light.
The trip has been restorative, a welcome break. Return flight, Saturday night 11:15 pm arriving 5:10 am in Philadelphia.
Tuesday, December 15, 2009
Monday, December 7, 2009
Looking Good and Feeling Stronger
The latest word from Dr. Schulick is that the percolating fistula has closed. That is pretty much the last of the post-surgical concerns. The next big date is December 22nd when Faina will have a CT scan. It will roughly mark the four month point since her surgery.
Faina is certainly gaining strength and expanding her culinary options. Other than spicy foods and sugar almost anything is fair game. On the other hand almost anything is like a spin of the roulette wheel. Will it make its way through the intestines dropping off vital nutrients along the way or not? Today yogurt is a good choice, tomorrow less agreeable. Keeping an eye on portions is also a challenge. Eating too much, or something more challenging to process and she becomes like a python, crawling into a quiet place and lying still until she has finished digesting.
She is not yet ready to go to work, so that will still be a few months off. We have resumed some of our social life. The first big public event we attended was the Gala at the synagogue, a great experience for both of us. Last Friday, Faina sat through a Shabbat service for the first time in almost a year. We also attended another BSO concert, conducted by the extraordinary maestra Marin Alsop.
About 24 hours ago Faina arrived in Israel. She missed her mother's 90th birthday anniversary in the summer and wanted to get to Haifa as soon as possible. Now looked like the best opportunity. She is looking good, feeling strong, and has a window of opportunity.
Faina is certainly gaining strength and expanding her culinary options. Other than spicy foods and sugar almost anything is fair game. On the other hand almost anything is like a spin of the roulette wheel. Will it make its way through the intestines dropping off vital nutrients along the way or not? Today yogurt is a good choice, tomorrow less agreeable. Keeping an eye on portions is also a challenge. Eating too much, or something more challenging to process and she becomes like a python, crawling into a quiet place and lying still until she has finished digesting.
She is not yet ready to go to work, so that will still be a few months off. We have resumed some of our social life. The first big public event we attended was the Gala at the synagogue, a great experience for both of us. Last Friday, Faina sat through a Shabbat service for the first time in almost a year. We also attended another BSO concert, conducted by the extraordinary maestra Marin Alsop.
About 24 hours ago Faina arrived in Israel. She missed her mother's 90th birthday anniversary in the summer and wanted to get to Haifa as soon as possible. Now looked like the best opportunity. She is looking good, feeling strong, and has a window of opportunity.
Wednesday, November 18, 2009
Music of the Intestines
The latest adventure for Faina has been that of eating real food. In the quiet of the night, and even sometimes with all the noise of the day, the tune of her intestines is abundantly audible. Last night, I got to listen to the melody of a somewhat benign biscuit working its way through the system.
I've been asking people, what would you do if you were in a new place, all foods were new to you, some were yummy and went down well and others made you violently ill? Would you find a few things that work and stick with them or experiment with new and different things? Faina is abundantly in the later category. No surprises there.
Yesterday, Faina got to turn around the bikur cholim (visiting the sick) obligation making a visit to a friend recovering from ACL surgery.
Fistula, after a period of silence, has resumed a low level of perkiness. We see Dr. Schulick next week for a scheduled appointment. We keep in contact with the oncologist, Dr. Koutrelakos, maintain a correspondence with a specialist at Sloan-Kettering, and keep networking with professionals in San Francisco and Haifa. Limbo, it's the new normal.
I've been asking people, what would you do if you were in a new place, all foods were new to you, some were yummy and went down well and others made you violently ill? Would you find a few things that work and stick with them or experiment with new and different things? Faina is abundantly in the later category. No surprises there.
Yesterday, Faina got to turn around the bikur cholim (visiting the sick) obligation making a visit to a friend recovering from ACL surgery.
Fistula, after a period of silence, has resumed a low level of perkiness. We see Dr. Schulick next week for a scheduled appointment. We keep in contact with the oncologist, Dr. Koutrelakos, maintain a correspondence with a specialist at Sloan-Kettering, and keep networking with professionals in San Francisco and Haifa. Limbo, it's the new normal.
Thursday, November 5, 2009
Sheherazade
Saturday night we went to the Baltimore Symphony Orchestra. They performed what feels like our theme song Sheherazade. This story has not quite been a thousand and one nights, even though it feels that way. Looking back, the preface to this story began in the Spring, with stomach discomfort, an appointment with a gastroenterologist, an endoscopy, and the discovery of "something common that you need not worry about." Dateline - April 6, the 12th of Nissan, a few days before Pesach, Judaism's three millenia challenge to the GI tract. Chapter one began with, "I'm sorry to have to tell you, but ... " That was just over six-months ago.
To the right are the accoutrements of TPN, the source of Faina's nutrition since August 12th. Since coming home from the hospital, every day it has been the exercise of organizing a sterile work area, pulling the TPN bag from the refrigerator, adding: 6 ml of Zantac, the pre-filled Ascorbic Acid syringe, and 5ml from each of the two MVI (Multi-Vitamin Infusion) vials. This last ingredient's package takes a magnifying glass to read, but on close examination the ingredient lists vitamins A, B1, B2, B6, B12, C, D, K, and more. The next step is attaching the IV tube, priming the pump, cleaning Faina's PICC line, injecting a saline wash, attaching the tube to the PICC line and starting the infusion. This whole process is pretty meditative. It is about the only block of the day that nothing breaks my focus as I proceed from step one, to step two, to step three, and on. There is a beauty to filling the syringe with the two vials of MVI. Vial 1 is a clear solution and Vial 2 is a light yellow. I push 5ml of air into the vial and then the pressurized vial pushes back and fills the syringe itself. With the second vial I slow down the pushback. The vitamins are suspended in an oily solution so the yellow streams in and swirls into the syringe, a bit like a three dimensional paint spinner artwork, except with a higher purpose. Sometimes as the fluid streams in, the yellow goes to the bottom of the syringe and slowly the two mix together, like a rising tide; other times the mixing seems to go from the center of the tube toward the outside, like a growing tornado.
My dwelling on this procedure borders on the nostalgic. In reality, I look forward to it being a part of the past and as of this Shabbat morning, we will put this daily exercise to rest. Other than a monthly vitamin B shot, for life, Faina's nutrition, will all be the old fashioned way. Over the past few weeks she has been testing the culinary waters, yogurt, cottage cheese, potatoes, pasta, kasha, salmon, and tuna, pretty much easing into everything she ever ate before our personal Sheherazade began telling this story for 203 American Nights and counting.
Tuesday, October 27, 2009
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
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
Wednesday, October 21, 2009
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.
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.
Tuesday, October 20, 2009
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.
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.
Thursday, October 15, 2009
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.
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.
Monday, October 12, 2009
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)
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)
Friday, October 2, 2009
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!
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!
Tuesday, September 29, 2009
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.
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.
Sunday, September 27, 2009
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.
Thursday, September 24, 2009
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)
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)
Tuesday, September 22, 2009
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.
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.
Friday, September 18, 2009
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.
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.
Thursday, September 17, 2009
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.
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.
Tuesday, September 15, 2009
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).
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).
Monday, September 14, 2009
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 ...
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 ...
Sunday, September 13, 2009
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.
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.
Saturday, September 12, 2009
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.
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.
Friday, September 11, 2009
Maybe Tomorrow
Just a really short note: It looks like Faina is going to be sent home from Hopkins tomorrow.
Ken yehi ratzon
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.
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.
Wednesday, September 9, 2009
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
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).
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).
Tuesday, September 8, 2009
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.
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.
Sunday, September 6, 2009
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 ...
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 ...
Friday, September 4, 2009
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!
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.
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.
Wednesday, September 2, 2009
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.
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.
Tuesday, September 1, 2009
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.
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.
Monday, August 31, 2009
A Long Slow Slog
The weekend was mostly devoted to the incremental, slow process of healing. On Friday Faina had a drain put in to clear the fluid that had pooled up in her pelvic region. By late afternoon Sunday, that appeared to have been effective. The staples that were removed from just below her navel continue to allow the draining of the slowly leaking bile from some small hole, probably at the connection between the esophagus and the intestine. The doctors advise that this can be expected to heal on its own. Dr. Sichar, one of Dr. Schulick's residents, gave a clear explanation of this less than rare occurance.
Faina's hemoglobin count dropped and so on Saturday and Sunday she received transfusions of blood. Given the choice between a new IV line and using the port she had put into her chest for the chemotherapy she opted for the port, even though that meant more than an hour without the pain killing morphine.
All of the doctors and nurses encourage walking and Faina is getting the reputation of a marathon walker. We were given the opportunity to leave the 4th floor and the suggestion was made to go to the "Jesus statue." The statue is a bit of a curiosity since Johns Hopkins was a Quaker and founded the university, hospital and medical school to be a non-sectarian institution. This was a heretical concept in 19th century Baltimore and was righted, somewhat, some would say, by installing this 10.5 foot work. The highly polished foot was clear evidence that people touch the foot of the statue, presumably accompanied by a prayer or a meditative hope for healing. At any rate, the statue has taken on secular meaning and it served as a milestone, a destination, a measure of progress from the limits of the 4th floor of the Weinberg building.
Faina's hemoglobin count dropped and so on Saturday and Sunday she received transfusions of blood. Given the choice between a new IV line and using the port she had put into her chest for the chemotherapy she opted for the port, even though that meant more than an hour without the pain killing morphine.
All of the doctors and nurses encourage walking and Faina is getting the reputation of a marathon walker. We were given the opportunity to leave the 4th floor and the suggestion was made to go to the "Jesus statue." The statue is a bit of a curiosity since Johns Hopkins was a Quaker and founded the university, hospital and medical school to be a non-sectarian institution. This was a heretical concept in 19th century Baltimore and was righted, somewhat, some would say, by installing this 10.5 foot work. The highly polished foot was clear evidence that people touch the foot of the statue, presumably accompanied by a prayer or a meditative hope for healing. At any rate, the statue has taken on secular meaning and it served as a milestone, a destination, a measure of progress from the limits of the 4th floor of the Weinberg building.
Friday, August 28, 2009
3:00 PM
Faina is beginning to despair over whether or not she will ever get out of Hopkins. Sharing her feelings in darker terms with Dr. Schulick he replied, "I promised I will get you through this and you will get through this" and you will get your life back. It has now been 16 days in the Weinberg building.
This morning's CT scan showed that her intestines are not blocked, the contrast made it through practically to the terminus of the GI system. Encouraging news. It also revealed that she has a small leak in her intestines, around the sutchers now connecting her esophagus to her small intestine. There is also fluid pooling just under the skin at her belly. For now the prescription is closely monitoring her progress, giving her time to heal, and draining the leaks. A third surgery remains a possibility, but is on the back burner for now. Pain is consistently a nine. Envisioning a discharge date is not a subject of active speculation.
This morning's CT scan showed that her intestines are not blocked, the contrast made it through practically to the terminus of the GI system. Encouraging news. It also revealed that she has a small leak in her intestines, around the sutchers now connecting her esophagus to her small intestine. There is also fluid pooling just under the skin at her belly. For now the prescription is closely monitoring her progress, giving her time to heal, and draining the leaks. A third surgery remains a possibility, but is on the back burner for now. Pain is consistently a nine. Envisioning a discharge date is not a subject of active speculation.
3:00 AM Call
Soupy is starting to look like a leak of indeterminate origin. Faina is just back from an early AM CT scan and there is fluid pooling outside the abdominal cavity. Dr. Schulick has been called and he will be meeting with his team in a few hours. It could be another surgery.
Thursday, August 27, 2009
Elevated White Blood Cell Count
An elevated white blood cell count is an indication that the body is fighting off an infection. Faina's numbers continue to call for attention and she is getting regular doses of antibiotics. This morning Dr. Cunningham removed a few of the staples from the incision, described the site as "soupy," absorbed some of the moisture with gauze and cotton swabs, packed in one piece of gauze (pointing out to the two students he had in tow that this will lower the chance of leaving something behind), and covered the now open wound.
Earlier in the day, Dr. Schulick visited telling Faina that it will take time for her intestines to get active again. He pointed out that at this point she has had nine weeks of aggressive chemotherapy and two surgeries. This is going to take some time.
She is still seriously uncomfortable and not sleeping well at night. Despite that, she looks well, takes everything in stride, and enjoyed reading the stack of cards I brought in of wishes for a speedy recovery, admiration, and encouragement.
Earlier in the day, Dr. Schulick visited telling Faina that it will take time for her intestines to get active again. He pointed out that at this point she has had nine weeks of aggressive chemotherapy and two surgeries. This is going to take some time.
She is still seriously uncomfortable and not sleeping well at night. Despite that, she looks well, takes everything in stride, and enjoyed reading the stack of cards I brought in of wishes for a speedy recovery, admiration, and encouragement.
Wednesday, August 26, 2009
Slowly, Slowly
At this point, almost every nurse on the 4th floor recognizes Faina. A lot of them cheer her on when they see her up and walking around. The encouragement serves to motivate her to do more. There are some exceptional nurses here. May, Maria, Jennifer, Heather, and Kerry in particular are skillful, attentive, and knowledgeable. They are all patient, positive, and encouraging.
Progress is slow. There is some gurgling from the intestines, but not much other activity. Walking and chewing gum are supposed to help, but it is mostly going to take some time. She had her first post-surgery drink of water, about two ounces. Dr. Schulick is in no hurry to discharge her from the hospital and thinks that will happen Friday, at the earliest.
Faina is making a project of weaning herself from the morphine. She only gets a dose at the push of the button, but tries not to take that step. She is in constant pain.
Tuesday, August 25, 2009
Up Your Nose With A ...
One of the first things Dr. Schulick did along with the second surgery was re-insert a drain hose up Faina's nose, down the esophagus, and into the intestines. Besides being an uncomfortable procedure, just imagine the discomfort level of a rubber hose running down the back of your throat, not to mention up your nostril. One a scale of 0-10 ... I was happy for Faina yesterday evening to see her sans hose. Besides being a lot more comfortable, she is also free of the connection of the hose to one of the multitude of ports behind her bed, in this case to a slow drawing vacuum.
There is still very little sound coming from the intestines. This condition is challenging Faina's sense of peace. What can it mean that her intestines are not perking back into action? In medical parlance, her body suffered an insult, "a bodily injury, irritation, or trauma." For now chalk the quiet up to an insulted intestine. Nurse Jen advised patience, "These things take time. Meanwhile do what you are doing, get up, walk around. It is the best thing you can do. Give it some time."
There is still very little sound coming from the intestines. This condition is challenging Faina's sense of peace. What can it mean that her intestines are not perking back into action? In medical parlance, her body suffered an insult, "a bodily injury, irritation, or trauma." For now chalk the quiet up to an insulted intestine. Nurse Jen advised patience, "These things take time. Meanwhile do what you are doing, get up, walk around. It is the best thing you can do. Give it some time."
Monday, August 24, 2009
Pain Management
The two biggest questions asked the past few days have been: 1) "On a scale of 0-10 with zero being no pain and 10 being excruciating pain how would you rate your level of pain?" 2) "Have you passed gas?" The main exam is listening to her abdomen for signs of activity.
Until about six hours after the surgery Faina's answer to the first question was consistently nine or ten. It was constantly insisted that she could not be given a steady IV dose, that she would have to push the button on the pump. That meant a cycle of pain, push the button, 2 minutes later feel relief, fall asleep from the dose, wake up in pain, push the button ... The pain management team visited Faina Friday morning and put her on a steady base dose of morphine that she supplements by pushing the button. Yesterday she infrequently pushed the button although she reported the pain level to be about 5-6.
Another hospital team inserted a PICC line so Faina is now taking her nourishment through a line that goes into a vein that goes directly into her heart. She has swollen up a bit from all of the fluids.
Faina placed an excited call in the afternoon, "Guess what I just did?" It was a yes to question number two. On a scale of 0-10 it was not quite Blazing Saddles campfire scene, but a start.
Her intestines gave off minimal signs of activity. The latest buzz is possibly real food tomorrow and expect three-four more days at Hopkins.
All of this gives special resonance to the Asher Yatzar.
Blessed are You, Adonai our God, Ruler of the universe, who formed
humans in wisdom, and created in us all manner of openings
and cavities. It is manifest and known before the throne of your glory
that if any one of them ruptured or were blocked,
it would be impossible to survive and stand before You.
Blessed are You, Adonai, who heals all flesh and is wonderful in Your acts.
Until about six hours after the surgery Faina's answer to the first question was consistently nine or ten. It was constantly insisted that she could not be given a steady IV dose, that she would have to push the button on the pump. That meant a cycle of pain, push the button, 2 minutes later feel relief, fall asleep from the dose, wake up in pain, push the button ... The pain management team visited Faina Friday morning and put her on a steady base dose of morphine that she supplements by pushing the button. Yesterday she infrequently pushed the button although she reported the pain level to be about 5-6.
Another hospital team inserted a PICC line so Faina is now taking her nourishment through a line that goes into a vein that goes directly into her heart. She has swollen up a bit from all of the fluids.
Faina placed an excited call in the afternoon, "Guess what I just did?" It was a yes to question number two. On a scale of 0-10 it was not quite Blazing Saddles campfire scene, but a start.
Her intestines gave off minimal signs of activity. The latest buzz is possibly real food tomorrow and expect three-four more days at Hopkins.
All of this gives special resonance to the Asher Yatzar.
Blessed are You, Adonai our God, Ruler of the universe, who formed
humans in wisdom, and created in us all manner of openings
and cavities. It is manifest and known before the throne of your glory
that if any one of them ruptured or were blocked,
it would be impossible to survive and stand before You.
Blessed are You, Adonai, who heals all flesh and is wonderful in Your acts.
Friday, August 21, 2009
Two Steps Forward, One Step Back
We're in a pretty good spot now, but the last 36 hours have been horrendous. After Faina's first bites of real food she was mildly uncomfortable. Through most of the day Wednesday she was slightly more uncomfortable with sharp pain in the abdominal region. This morning (Thursday) the pain was excruciating. She had a CT scan early in the morning and a Upper GI series an hour later. By early afternoon Dr. Schulick was scrubbing in, Faina was under, the week old stomach scar was re-opened, and surgery was underway. At about 5:30 Dr. Schulick reported that Faina had a kink in her intestines caused by adhesions, he removed them, and we will proceed slowly with re-introducing food. It is just one of those things that happens, not often, but not rarely.
Following surgery Faina was suffering from a great deal of pain until it was brought under control by 6 mg of morphine roughly every six minutes. That is triple the dose she was getting before the surgery. By about midnight her pain level was in the tolerable zone, a 5-6/10 by her scoring and at about midnight she was ready for some sleep.
This will probably mean another 3-4 days in the hospital.
Sister-in-law Maya arrives from Haifa on Saturday to lend a post-operative hand.
Following surgery Faina was suffering from a great deal of pain until it was brought under control by 6 mg of morphine roughly every six minutes. That is triple the dose she was getting before the surgery. By about midnight her pain level was in the tolerable zone, a 5-6/10 by her scoring and at about midnight she was ready for some sleep.
This will probably mean another 3-4 days in the hospital.
Sister-in-law Maya arrives from Haifa on Saturday to lend a post-operative hand.
Wednesday, August 19, 2009
I think we're going to beat this thing
Faina called this morning after Dr. Schulick stopped by to check on her. During the surgery he removed 38 lymph nodes and said he would have the results by today. He reported that they all tested negative for cancer and added, "I think we're going to beat this thing."
HaTov v'hameitiv
HaTov v'hameitiv
Tuesday, August 18, 2009
Would You Like Fries With That Order?
Plenty of good news today. Faina was relieved of one more tube (that connected to a bag), generally speaking another step toward heading out the front door. From her left hip she only has the "just in case" feeding tube that, thus far, has not been needed.
She has not lost any weight. OK, she is probably full of IV fluid, but still, she looks healthy, radiant, in fact, kenahora. The biggest news of the day, a first meal. It happened to be the regular hospital fare, loaded with things straight from the list of foods "To Avoid" that the nutritionist gave her a few hours earlier. Maybe someone did not get the memo about a restricted diet or perhaps it was a test of her resolve. At any rate, her first solid food in nine days was chicken breast and mashed potatoes.
After another trip around the 4th floor we can safely say room C-19 is the cheeriest of them all. Adding to the visual appeal, an amazing balloon bouquet from friends at Beth El.
She has not lost any weight. OK, she is probably full of IV fluid, but still, she looks healthy, radiant, in fact, kenahora. The biggest news of the day, a first meal. It happened to be the regular hospital fare, loaded with things straight from the list of foods "To Avoid" that the nutritionist gave her a few hours earlier. Maybe someone did not get the memo about a restricted diet or perhaps it was a test of her resolve. At any rate, her first solid food in nine days was chicken breast and mashed potatoes.
After another trip around the 4th floor we can safely say room C-19 is the cheeriest of them all. Adding to the visual appeal, an amazing balloon bouquet from friends at Beth El.
Monday, August 17, 2009
Field Trip - Upper GI Series
Today’s visit to Faina played like a bit out of the Keystone Cops. I came to her room and she wasn’t there, but the bathroom door was closed and the lights were on. “Hello,” and a tap at the door went unanswered and for good reason, she was not there. Maybe she is on a stroll? Stepping out into the hall, the nurse said she was in Nelson, having an Upper GI (Gastrointestinal) series, that she would be there for a few hours, and that I could go over and sit with her. So down I went, two floors, crossed the “Bridge” to the main building, up a hall, down a hall, then downstairs another floor, to Nelson. First I was escorted to a seat while they located Faina. Then I was taken down the corridor to a chair outside of room six and said I couldn’t go in, but that I should wait there for her to be brought out. A few minutes later, the same receptionist came back to me and said, “What is your wife’s name?” As she was bringing me back to the desk from which I had started this dance in Nelson, my phone started to buzz. It was Faina, back in her room. The nurse was embarrassed and apologetic. I told her it was no problem, I needed the exercise. The Upper GI results were good, no leaks.
Faina is still getting up, sitting in a chair more than in the bed, walking around a few times a day, pretty much has explored every inch of the 4th floor corridors, hits the pain medication button with reasonable frequency, smiles a lot more, has good color, talks about the future, and generally has a great attitude about life, the world, and health care in America.
Sunday, August 16, 2009
Six Minute Cycles
Faina never ceases to amaze. She took her first walks yesterday reaching, pretty much, every inch of floor space to be traversed on the 4th floor at Weinberg. As each day passes she is hooked up to fewer tubes that put fluids in and take fluids out. She is extraordinarily patient as doctors and nurses constantly come to administer various injections, test her insulin level, check her vital signs, inspect the various incisions, including the seven inch line from just below her navel to the sternum, and to ask the questions the protocols require. The miracle of modern medicine is a delicate balancing act of causes and effects. Months ago it was a matter of the body tolerating chemotherapy. Now, in post surgery recovery, the pain killers cause skin irritations, the Benadryl countering that brings on drowsiness. Heparin thins the blood to help prevent clotting, but also makes for easy bruising and it is a painful shot to receive. After daily changes to the pain killer, yesterday's fix was morphine. Faina has a button that activates the pump that doses out the pain relief. It is available on a six minute cycle. Along with the pain relief is a quick nap, just a minute at most. All day it was rare for Faina to push the button and not have the pump go to work. Her pain level, which on Friday she put in the eight to ten range, was more in the five to six zone yesterday.
Room 19C is coming to represent a botanical garden. It makes for smiles, visual appeal and compliments from the various physicians and each new shift of nurses.
On Monday they will try introducing a liquid diet and on Tuesday, the baby steps of solid food, possibly apple sauce or mashed potatoes. We are seeing good steady progress.
Room 19C is coming to represent a botanical garden. It makes for smiles, visual appeal and compliments from the various physicians and each new shift of nurses.
On Monday they will try introducing a liquid diet and on Tuesday, the baby steps of solid food, possibly apple sauce or mashed potatoes. We are seeing good steady progress.
Friday, August 14, 2009
Out of the ICU
Yesterday was a day of great progress. By noon Faina was sitting up, took a few steps, and moved to a regular room. She is still hitting the button to get a dose of the pain medication faster than the pump can give it, so her dose was upped from 22 to 30. She is dutiful about breathing exercises with the spirometer, lowering the risk of pneumonia. Her spirits are good, she made and took a few phone calls, and mostly bounced through short wake-sleep cycles. Hospital is far from restful as the day was punctuated by a steady stream of doctors and nurses checking on her progress.
Margo and Jamie are doing well. Margo is serving as an intern at a downtown Baltimore law firm, and made a bee line down Orleans Street after work to visit. Neighbor Amy stepped up to get Jamie to camp/class and back and Russell got her up to Baltimore later in the day.
I still hear Faina ask, "Am I in the ICU?" with hope that the answer is "Yes," meaning yes, they did the operation. It is an odd joy to have this milestone behind us. I look forward to a day of nurses coming in and out of the room, doctors with residents in-tow, family and friends, and Faina making further progress.
Margo and Jamie are doing well. Margo is serving as an intern at a downtown Baltimore law firm, and made a bee line down Orleans Street after work to visit. Neighbor Amy stepped up to get Jamie to camp/class and back and Russell got her up to Baltimore later in the day.
I still hear Faina ask, "Am I in the ICU?" with hope that the answer is "Yes," meaning yes, they did the operation. It is an odd joy to have this milestone behind us. I look forward to a day of nurses coming in and out of the room, doctors with residents in-tow, family and friends, and Faina making further progress.
Wednesday, August 12, 2009
Gastrectomy
What a day? At this moment, Faina is in the ICU following a successful surgery. Now begins the next chapter, the road to recovery.
Today started with the alarm going off at 4:00 am. The four of us were out the door by 5:00 and we were at Hopkins, on time, by 5:30. Faina was taken into the operating room at 7:35, pretty much right on schedule. All the earlier waiting, anxiety laden as it was, was really a build up to this next two hours of waiting, anxious by multiple degrees greater. In the balance was a repeat of April 27th, when Faina went in for a gastrectomy, was told the cancer had spread to her liver, classified as stage 4, and that she would have to undergo chemotherapy. Now, after three three-week cycles of chemotherapy, a month to heal, numerous doctors appointments, consultations and tests, it came down to this morning and an announcement that would take place sometime around 8:30: had the cancer spread or not, would the gastrectomy take place or not, and would the options suddenly all be either unspeakably horrible or a relatively well trod path toward recovery. The word came from the operating room: moving forward with the gastrectomy and, in an alternative universe sort of way, that was cause to celebrate.
This week's Torah portion begins, "See, this day I set before you blessing and curse: blessing if you obey ... and curse if you do not obey" (Devarim 11:26-28). Staring this particular biological beast in the face I can see blessing and curse. Is it health and good and bad choices? Is it to follow the advice of one person or another? Is it to do what one doctor or another proposes? Or is it ultimately to listen to that inner voice, the one that mediates between the yetzer tov and the yetzer ra, the one that we all really know is pointing us in the right direction. Parshat R'eih goes on to say, "You shall pronounce the blessings at Mount Gerizim and the curse at Mount Ebal" (11:29). I take this as a command to bear witness, to learn from experience, and to teach.
We are beginning a new chapter in this narrative. I pledge to probe it for its deeper meaning, find the path of the blessed, and steer clear of the cursed.
Today started with the alarm going off at 4:00 am. The four of us were out the door by 5:00 and we were at Hopkins, on time, by 5:30. Faina was taken into the operating room at 7:35, pretty much right on schedule. All the earlier waiting, anxiety laden as it was, was really a build up to this next two hours of waiting, anxious by multiple degrees greater. In the balance was a repeat of April 27th, when Faina went in for a gastrectomy, was told the cancer had spread to her liver, classified as stage 4, and that she would have to undergo chemotherapy. Now, after three three-week cycles of chemotherapy, a month to heal, numerous doctors appointments, consultations and tests, it came down to this morning and an announcement that would take place sometime around 8:30: had the cancer spread or not, would the gastrectomy take place or not, and would the options suddenly all be either unspeakably horrible or a relatively well trod path toward recovery. The word came from the operating room: moving forward with the gastrectomy and, in an alternative universe sort of way, that was cause to celebrate.
This week's Torah portion begins, "See, this day I set before you blessing and curse: blessing if you obey ... and curse if you do not obey" (Devarim 11:26-28). Staring this particular biological beast in the face I can see blessing and curse. Is it health and good and bad choices? Is it to follow the advice of one person or another? Is it to do what one doctor or another proposes? Or is it ultimately to listen to that inner voice, the one that mediates between the yetzer tov and the yetzer ra, the one that we all really know is pointing us in the right direction. Parshat R'eih goes on to say, "You shall pronounce the blessings at Mount Gerizim and the curse at Mount Ebal" (11:29). I take this as a command to bear witness, to learn from experience, and to teach.
We are beginning a new chapter in this narrative. I pledge to probe it for its deeper meaning, find the path of the blessed, and steer clear of the cursed.
Tuesday, August 11, 2009
24 Hours To Go
What do you do when you have less than 24 hours to go before an operation that could very well define the rest of your life? Matters are out of your control. It reminds me of the verse from Jonah, "All the sailors were afraid and each cried out to his own god" (1:5). That is pretty much where we are. To pass the time today, we have talked to friends and family, taken a walk in the park, read poetry, and hugged, a lot.
The question of existance never gets straightened out except through existing itself. (Heidegger, BT)
The question of existance never gets straightened out except through existing itself. (Heidegger, BT)
Monday, August 10, 2009
48 hour Countdown
The weekend was spent mostly trying to keeping otherwise occupied. Shabbat dinner was gastronomically memorable. Lively conversation inevitably turned to politics, Obama, health care reform, and the "liberal media." We managed to fit in "(500) days of Summer," a trip to the Hirshorn and a few rooms at the National Gallery. (Where would you go if you had an hour to spend in that building?) Faina also picked up a few new blouses. She is wearing one now and looks terrific.
Last night's dinner was the last solid food for Faina for, hopefully, many weeks. Larry took on the challenge of preparing a meal that would go down as one of the great exhibitions of cooking skill, to be remembered through the ages. Julia Child, Emeril, Wolfgang Puck, check your rear view mirrors. Someone's gaining on you.
Faina goes in to work today to clear up a few cases. She is surrounded by people who care deeply for her, having invoked the powers of Buddah, Allah, Jesus, God, and the power of modern medicine for her healing. The anxiety level is on the rise. In just under 48 hours, its a date with Dr. Schulick at Johns Hopkins. Our hopes and prayers are that he can go ahead with a gastrectomy.
U'fros aleinu sukkat shlomeicha.
Spread over us Your shelter of peace.
Last night's dinner was the last solid food for Faina for, hopefully, many weeks. Larry took on the challenge of preparing a meal that would go down as one of the great exhibitions of cooking skill, to be remembered through the ages. Julia Child, Emeril, Wolfgang Puck, check your rear view mirrors. Someone's gaining on you.
Faina goes in to work today to clear up a few cases. She is surrounded by people who care deeply for her, having invoked the powers of Buddah, Allah, Jesus, God, and the power of modern medicine for her healing. The anxiety level is on the rise. In just under 48 hours, its a date with Dr. Schulick at Johns Hopkins. Our hopes and prayers are that he can go ahead with a gastrectomy.
U'fros aleinu sukkat shlomeicha.
Spread over us Your shelter of peace.
Thursday, August 6, 2009
Keeping Busy
The plan for Friday is to work a typical schedule. Out for dinner tonight ran into a patient. As is typical, no note or recognition of wearing a head scarf. Thanks to Janice, the kitchen smells of fresh challah, waiting for tomorrow night's dinner. Everyday is a countdown to surgery, scheduled for August 12th.
Wednesday, August 5, 2009
Here We Are
For now we are in that odd in between bracketed by chemotherapy, which ended on July 9th, and surgery, which is scheduled for August 12. At a recent oncologist appointment, the physicians were amazed by the appearance of general health and vigor. Keeping mind occupied by continuing to work part-time and staying busy with activities and social engagement leads to a better sense of well being. Just as "All roads lead to Rome," the future's fulcrum is an August 12, 7:30 am surgery at Johns Hopkins Hospital.
Subscribe to:
Posts (Atom)
