The mitzvah of nuhum avelim (comforting mourners) is being carried out with great sensitivity. We all thank you for the warm, wonderful condolence messages. It has brought solace to get a glimpse of the many lives Faina continues to touch. A blessing of this internet age is the enabling of people to get such messages to us from across the region, across the country, and from Israel, Estonia, and Kazakstan in fractions of a second.
I am sharing a small, sample, unattributed, since they were private messages:
I was a patient of Dr. Nagel's and she was such a kind and gentle soul. She was always concerned about my pain and how to minimize it. When I panicked during a root canal procedure, she held my hand. To her dear family ... know that she touched the lives of many and we are all better for having known her. My husband and I are sorry for your loss.
Our thoughts and prayers go out to you and your family over the loss of your wife/your children's mother. We are so sorry that she was ill and now has passed. You are very strong and always seemed to light up whenever you talked about her. We want you to know that you and your family are in our thoughts.
I will always remember her warmth, the twinkle in her eyes, and how confortable she made me feel. I hope that you, Margo and Jamie will find comfort and peace now that she is no longer in pain. May her memory be a blessing.
We fondly remember going out to dinner with the two of you – how charming, how beautiful, how fun, how intelligent Faina was. We also remember visiting you at your lovely home when you had just discovered that Faina had cancer. I remember taking Faina’ hands into mine and feeling how powerful her life force was. We are so grateful that you let us into your lives at a very private moment. We cherish the memory of that visit.
This may speak for a lot of people:
I can't possibly communicate as insightfully, poetically, and perfectly as you have with all of us, but please know that I am one of many who were with you and Faina, if only in cyberspace, over the past few months and in moments of silence I will think of your love and her spirit.
The funeral will be this Sunday at Beth El @ 12:30. We will be sittting shiva, at home, through Thursday evening.
People have asked about donations in Faina's memory. Our daughters proposed something in Israel and related to cancer research. Faina got her masters degree from the Haifa Technion, a school that is often described accurately as the MIT of Israel and has several departments conducting cutting edge cancer research. Combining the three, we are asking for donations to be sent to the American Technion Society - http://www.ats.org/
Shabbat Shalom
Friday, March 11, 2011
Thursday, March 10, 2011
This is the Time
This is no time to be acting frivolous
because the time is getting late ....
This is no time to ignore warnings
This is no time to clear the plate
Let's not be sorry after the fact
and let the past become our fate ....
This is a time to gather force
and take dead aim and attack ....
The future is at hand ....
This is a time for action
because the future's within reach
This is the time (from There is no Time, Lou Reed)
The past few days have been extremely active. I've missed a lot of meals, caught my carbs and proteins on the fly and have not strung too many consecutive hours of sleep either. Nonetheless, this melancholy assignment has been a profound test of every inner and outer resource within my grasp. Margo and Jamie have been incredible in every way every step of the way.
Although Faina was told weeks ago that it was time to initiate hospice care, at the deepest levels of her Being, she had a need to hear confirmation of that assessment from Dr. Meng (Sloan Kettering), a definitive, respected, second opinion that there are no longer any treatment options. He had been holding to protocol that we would have to meet with him in New York. He finally offered to speak on the phone and with a fist full of recent CT, PT, and X-ray data communicated his assessment and suggested embrace the quality of life option at this point over suffering the rigors of any chemotherapy regimen he could propose. Faina acquiesed to his opinion and by extension, that of Dr. K. Today, home hospice is the reality.
As all of this was playing out, my brother-in-law, Igor was on his way from Israel. One of my first double dates with Faina was with her brother and his wife Galia. Like his father, fighting the Nazis from Stalingrad to Berlin, Igor was a part of the Israeli army chasing the PLO from southern Lebanon to Beirut in the 1982 Lebanon War. Years ago, when I asked him how he fought for four straight days with no sleep he said you just find the strength until the fighting is done. That is pretty much how I feel at the moment. Seeing his pain upon laying eyes on his sister on Tuesday morning was to look on a tragic scene. Despite the great distances that separated them, they were extremely close.
As I was writing this, while at her side, Faina quietly, peacefully passed away. She was always better than good, smarter than me, my guide and confidant. A fighter to the end. The greatest love of my life. My b'shert.
because the time is getting late ....
This is no time to ignore warnings
This is no time to clear the plate
Let's not be sorry after the fact
and let the past become our fate ....
This is a time to gather force
and take dead aim and attack ....
The future is at hand ....
This is a time for action
because the future's within reach
This is the time (from There is no Time, Lou Reed)
The past few days have been extremely active. I've missed a lot of meals, caught my carbs and proteins on the fly and have not strung too many consecutive hours of sleep either. Nonetheless, this melancholy assignment has been a profound test of every inner and outer resource within my grasp. Margo and Jamie have been incredible in every way every step of the way.
Although Faina was told weeks ago that it was time to initiate hospice care, at the deepest levels of her Being, she had a need to hear confirmation of that assessment from Dr. Meng (Sloan Kettering), a definitive, respected, second opinion that there are no longer any treatment options. He had been holding to protocol that we would have to meet with him in New York. He finally offered to speak on the phone and with a fist full of recent CT, PT, and X-ray data communicated his assessment and suggested embrace the quality of life option at this point over suffering the rigors of any chemotherapy regimen he could propose. Faina acquiesed to his opinion and by extension, that of Dr. K. Today, home hospice is the reality.
As all of this was playing out, my brother-in-law, Igor was on his way from Israel. One of my first double dates with Faina was with her brother and his wife Galia. Like his father, fighting the Nazis from Stalingrad to Berlin, Igor was a part of the Israeli army chasing the PLO from southern Lebanon to Beirut in the 1982 Lebanon War. Years ago, when I asked him how he fought for four straight days with no sleep he said you just find the strength until the fighting is done. That is pretty much how I feel at the moment. Seeing his pain upon laying eyes on his sister on Tuesday morning was to look on a tragic scene. Despite the great distances that separated them, they were extremely close.
As I was writing this, while at her side, Faina quietly, peacefully passed away. She was always better than good, smarter than me, my guide and confidant. A fighter to the end. The greatest love of my life. My b'shert.
Friday, March 4, 2011
Finding the Goldilocks Zone
In astronomy, the Goldilocks Zone is that distance from a sun where water would stay liquid, and therefore, potentially sustain life. It is the range that is not too hot to burn off water and not too cold that H2O would be frozen. Think Venus, "This planet is too hot;" Throw in Mars, "This planet is too cold;" and then consider Earth, "This planet is just right." A challenge for astrophysicists is to find an exoplanet, one not in our solar system, that is in the Goldilocks Zone of another star.
We have spent the last week trying to get Faina to the analgesic Goldilocks Zone. She has a whole solar system of potent medications in her orbit, Reglan, Ambien, Adivan, and Zofran. Other medications, such as oxycontin and oxycodone have passed by like comets or, like meteorites, burned up in her atmosphere. On Tuesday, she could not get enough dilaudid to be beyond the range of pain. That was a long, unpleasant day. The pills, that she now seems able to get down, help create a pharmacologic constellation. Her North Star (Polaris) is the PCA pumped, patient controlled, Dilaudid. These doses come two ways, a base dose that is continuously pumped and boluses, a sudden rush when the button is pushed. I spent a lot of time on the phone with Hopkins Home Health Care (HHHC) services, resetting the pump and over the course of the day, yesterday, her base dose was changed three times, from 2 mg/hour to 3 mg per hour to 5 mg per hour. The bolus was also changed from 1.5 mg with a 6 minute lockout to 2 mg with a 10 minute lockout. This progression took her from being in almost constant pain to what became, on the up side, a good night's sleep and, on the down side, a day of being alarmingly over sedated. She was as lifeless as the moon. Her speech tended toward incoherent. Today, I once again worked with HHHC, lowered her base dose to 4 mg. After a few hours she noticeably regained some of her sparkle. At about that point Jamie came home from her first night's performance in Atholton HS's production of The Drowsy Chaperone. Faina followed up the earlier "Break a leg" with a congratulations. The pharmacist tells me that it takes hours for the body to adjust to the new settings. Let's see what one more revolution of this world brings us along with a new dawn.
We have spent the last week trying to get Faina to the analgesic Goldilocks Zone. She has a whole solar system of potent medications in her orbit, Reglan, Ambien, Adivan, and Zofran. Other medications, such as oxycontin and oxycodone have passed by like comets or, like meteorites, burned up in her atmosphere. On Tuesday, she could not get enough dilaudid to be beyond the range of pain. That was a long, unpleasant day. The pills, that she now seems able to get down, help create a pharmacologic constellation. Her North Star (Polaris) is the PCA pumped, patient controlled, Dilaudid. These doses come two ways, a base dose that is continuously pumped and boluses, a sudden rush when the button is pushed. I spent a lot of time on the phone with Hopkins Home Health Care (HHHC) services, resetting the pump and over the course of the day, yesterday, her base dose was changed three times, from 2 mg/hour to 3 mg per hour to 5 mg per hour. The bolus was also changed from 1.5 mg with a 6 minute lockout to 2 mg with a 10 minute lockout. This progression took her from being in almost constant pain to what became, on the up side, a good night's sleep and, on the down side, a day of being alarmingly over sedated. She was as lifeless as the moon. Her speech tended toward incoherent. Today, I once again worked with HHHC, lowered her base dose to 4 mg. After a few hours she noticeably regained some of her sparkle. At about that point Jamie came home from her first night's performance in Atholton HS's production of The Drowsy Chaperone. Faina followed up the earlier "Break a leg" with a congratulations. The pharmacist tells me that it takes hours for the body to adjust to the new settings. Let's see what one more revolution of this world brings us along with a new dawn.
Monday, February 28, 2011
Eight Is Enough
We came home from the hospital Saturday night. It was eight days and seven nights at Howard County General. The experience was not an exercise in the best that our health care system can deliver. There were unnecessary medications prescribed, unnecessary tests called for, some mistimed administration of medicines, and, with more diligent administration, could have easily been two or three days fewer. There was virtually no continuity of care with a rotation of four different physicians and physicians assistants supervising Faina's care.
It took until Friday for it to occur to someone that some of Faina's discomfort could be relieved through a paracentesis and a thoracentisis. It was a good decision with more than a liter of peritoneal fluid being drained off and almost a liter of pleural fluid ending up in a bottle. This added a day to her stay and was a call that could have been made earlier.
Nurses shifts are 12 hours. With 15 shifts in our stay we only saw the same nurse twice, although Monday's day nurse stopped in twice to say hi and check on Faina, in a time she was assigned to other patients. The worst nurse was very good. The rest were excellent.
Most impressive, other than the newly renovated facilities, was that the hospital had a state-of-the-art tracking system for prescriptions. There was a computer file on each patient and laptops on mobile carts in which data was entered every few hours, vital signs, pain level on a 0-10 scale, and medications administered. This technology, no doubt, will serve to prevent drug interactions, which in Faina's case, with at least eight different prescriptions, has increased potential or mismatching medication to patient. Before a medication was given, the nurse would scan Faina's bracelet and a bar code on the drug. Not that it ever did, but supposedly, an alarm would go off if there was a problem.
Faina came home by ambulance. The discharging physician insisted.
Faina did not sleep at all well on her first night home in over a week. The line that is feeding an analgesic into her system was slightly clogged, so the medication was slowly reaching her. She still received the full dose, it was just inelegantly done with way too many beeps from the pump than necessary. The dosage was also way too low, a problem that was rectified with a phone call. Her dosage was raised significantly. The pain management is still less than adequate, in part because Faina represents a moving target. The pain level increases, the drug resistance also rises, and the dosage levels are challenged to keep pace.
Late last week, Dr. K. told us that resuming chemotherapy is not an option. The name of the game, for now, is holding the pain at bay and keeping comfortable. We can bring this about best, surrounded by family and friends, here, at home in Fulton.
 |
| Thoracentesis |
Nurses shifts are 12 hours. With 15 shifts in our stay we only saw the same nurse twice, although Monday's day nurse stopped in twice to say hi and check on Faina, in a time she was assigned to other patients. The worst nurse was very good. The rest were excellent.
Most impressive, other than the newly renovated facilities, was that the hospital had a state-of-the-art tracking system for prescriptions. There was a computer file on each patient and laptops on mobile carts in which data was entered every few hours, vital signs, pain level on a 0-10 scale, and medications administered. This technology, no doubt, will serve to prevent drug interactions, which in Faina's case, with at least eight different prescriptions, has increased potential or mismatching medication to patient. Before a medication was given, the nurse would scan Faina's bracelet and a bar code on the drug. Not that it ever did, but supposedly, an alarm would go off if there was a problem.
Faina came home by ambulance. The discharging physician insisted.
Faina did not sleep at all well on her first night home in over a week. The line that is feeding an analgesic into her system was slightly clogged, so the medication was slowly reaching her. She still received the full dose, it was just inelegantly done with way too many beeps from the pump than necessary. The dosage was also way too low, a problem that was rectified with a phone call. Her dosage was raised significantly. The pain management is still less than adequate, in part because Faina represents a moving target. The pain level increases, the drug resistance also rises, and the dosage levels are challenged to keep pace.
Late last week, Dr. K. told us that resuming chemotherapy is not an option. The name of the game, for now, is holding the pain at bay and keeping comfortable. We can bring this about best, surrounded by family and friends, here, at home in Fulton.Friday, February 25, 2011
127 Hours
Today at around 5:00 we passed the 127 hour mark of temporary residence at Howard County General Hospital. Rabbi Harris paid a call yesterday and Marilyn came by today. Margo picked up Jamie from play rehearsal and the two spent a few hours in this 12' X 12' room. Tanya, David and Donna came by. Brother Russell stopped by this evening. The room is now properly equipped with flowers.
Faina had a rough night last night. She was uncomfortable and in some pain, usually 5-8 on the 0-10 scale. She got out of bed at about 4:00 am, got caught in the tangle of hoses and cords, slipped and fell. The cold thud of her 120 pounds dropping to the floor woke me up to an un-pretty spill with an arm and wrist looking oddly twisted. It took two nurses to get her back on her feet. The only price she paid was a slightly bruised wrist, a better deal than the other 127 hour person.
By early afternoon Thursday, it was clear that another night would be spent on the fourth floor of this house of healing. As a door prize we will be taking home a pumper pack of hydromorphone. This was the sticking point that kept us here an extra two days. The pumper pack requires a steady dose in addition to an on-demand fix, the PCA had been set to only an on-demand dose. The PCA had to be re-set to a base, steady dose and an on-demand dose, with a 24 hour period to make sure the new settings are right. It made me think of the page I get with every BC/BS EOB statement about health insurance fraud. Faina has received excellent care over these 127 plus hours, but these last two days here could have been avoided with more careful, thoughtful administration. Such is our health care system and I'm not complaining. We have met some exceptional professionals over the past few days. The PAs, the pain management specialist and the nurses with whom we have been interfacing have been good to exceptional, sensitive, patient, and caring. Nonetheless, we look forward to getting home.
Faina had a rough night last night. She was uncomfortable and in some pain, usually 5-8 on the 0-10 scale. She got out of bed at about 4:00 am, got caught in the tangle of hoses and cords, slipped and fell. The cold thud of her 120 pounds dropping to the floor woke me up to an un-pretty spill with an arm and wrist looking oddly twisted. It took two nurses to get her back on her feet. The only price she paid was a slightly bruised wrist, a better deal than the other 127 hour person.
By early afternoon Thursday, it was clear that another night would be spent on the fourth floor of this house of healing. As a door prize we will be taking home a pumper pack of hydromorphone. This was the sticking point that kept us here an extra two days. The pumper pack requires a steady dose in addition to an on-demand fix, the PCA had been set to only an on-demand dose. The PCA had to be re-set to a base, steady dose and an on-demand dose, with a 24 hour period to make sure the new settings are right. It made me think of the page I get with every BC/BS EOB statement about health insurance fraud. Faina has received excellent care over these 127 plus hours, but these last two days here could have been avoided with more careful, thoughtful administration. Such is our health care system and I'm not complaining. We have met some exceptional professionals over the past few days. The PAs, the pain management specialist and the nurses with whom we have been interfacing have been good to exceptional, sensitive, patient, and caring. Nonetheless, we look forward to getting home.
Tuesday, February 22, 2011
85 Hours and Counting
It has now been four days at Howard County General Hospital. The first day was mostly spent in the emergency room. The second day was punctuated by refining the pain management with a lot of sedative induced sleep time. On the third day Faina was comfortable, awake most of the day, up, walking around, and always straddling that border between comfort and pain. Today Faina was up a good part of the day. We took one walk covering the fourth floor from end to end and a second, shorter walk.
This whole exercise has been driven by the need for pain management. While the nurses are completely clear in their understanding of this as the first order of business they are often stymied in their efforts. While in the emergency room, the nurse had to wait for the doctor's ok to give a pain killer. It took three one-hour cycles before he finally made the four mg dose a standing order. This was a case of be involved and be present or delegate where delegating is really not an option. After being admitted to the hospital and given a PCA (patient controlled analgesia) pump, there were two times where the pharmacy did not have the dilaudid ready before the pump's supply ran out. In one instance it was on its way to the room and in the other, the nurse hustled downstairs to get the syringe the moment it was ready, cuttting out the delivery man/middle man from the process. One other nurse said she orders the next syringe early and keeps it in her pocket, at the ready. All of today, the pain was under control.
At one stage there was concern that Faina could have a blood clot, so she was sent to radiology for a CT scan. A later concern led to an order for an X-ray, but Faina refused to go along with that. Three times Faina was offered a flu shot. After the third refusal, and a question asked along the lines of: do you get a bonus for giving flu shots. The nurse said, "As a matter of fact, we do." She added that she could check a box that said "Patient refused" and the question would not be asked again.
There were a number of visitors today. Mom, Dad, Margo, and Jamie. Also our wonderful neighbors, Amy, Linda, and David. They are constant reminders of the wisdom of selling the Wolf Creek house and moving a few miles southwest to Fulton. Given the hit to the price of real estate, we are underwater on our mortgage, but taking residence in this community, is worth every shekel.
Among the last of the visitors was Dr. Knight. He has been covering for Dr. Koutrelakos, who is on vacation this week. He saw the CT scan results and his concern is fluid build up. He thought it could either be retaining water since the hospital has Faina hooked up to many constant flowing IV solutions. He said there is also the possibility of ascites. He suggested a PT scan as soon as possible and an appointment with the well rested Dr. K. without haste.
The last visitor was Dr. Matsunaga, the pain management specialist. Dr. M. was pleased with the situation and said that Faina could be discharged tomorrow. She would get a take home PCA pump and Hopkins Healthcare would keep her supplied. While we were hoping for a speedy discharge process, the nurses disabused us of such fanciful thoughts, and described a timetable that is likely to bring us close to sunset.
86 hours and counting.
This whole exercise has been driven by the need for pain management. While the nurses are completely clear in their understanding of this as the first order of business they are often stymied in their efforts. While in the emergency room, the nurse had to wait for the doctor's ok to give a pain killer. It took three one-hour cycles before he finally made the four mg dose a standing order. This was a case of be involved and be present or delegate where delegating is really not an option. After being admitted to the hospital and given a PCA (patient controlled analgesia) pump, there were two times where the pharmacy did not have the dilaudid ready before the pump's supply ran out. In one instance it was on its way to the room and in the other, the nurse hustled downstairs to get the syringe the moment it was ready, cuttting out the delivery man/middle man from the process. One other nurse said she orders the next syringe early and keeps it in her pocket, at the ready. All of today, the pain was under control.
At one stage there was concern that Faina could have a blood clot, so she was sent to radiology for a CT scan. A later concern led to an order for an X-ray, but Faina refused to go along with that. Three times Faina was offered a flu shot. After the third refusal, and a question asked along the lines of: do you get a bonus for giving flu shots. The nurse said, "As a matter of fact, we do." She added that she could check a box that said "Patient refused" and the question would not be asked again.
There were a number of visitors today. Mom, Dad, Margo, and Jamie. Also our wonderful neighbors, Amy, Linda, and David. They are constant reminders of the wisdom of selling the Wolf Creek house and moving a few miles southwest to Fulton. Given the hit to the price of real estate, we are underwater on our mortgage, but taking residence in this community, is worth every shekel.
Among the last of the visitors was Dr. Knight. He has been covering for Dr. Koutrelakos, who is on vacation this week. He saw the CT scan results and his concern is fluid build up. He thought it could either be retaining water since the hospital has Faina hooked up to many constant flowing IV solutions. He said there is also the possibility of ascites. He suggested a PT scan as soon as possible and an appointment with the well rested Dr. K. without haste.
The last visitor was Dr. Matsunaga, the pain management specialist. Dr. M. was pleased with the situation and said that Faina could be discharged tomorrow. She would get a take home PCA pump and Hopkins Healthcare would keep her supplied. While we were hoping for a speedy discharge process, the nurses disabused us of such fanciful thoughts, and described a timetable that is likely to bring us close to sunset.
86 hours and counting.
Sunday, February 20, 2011
Chai Bahem
אֲשֶׁר יַעֲשֶׂה אֹתָם הָאָדָם וָחַי בָּהֶם
My ordinances ... which if a person does, they shall live by them (Vayikra 18:5)
The third book of the Torah does not get the enthusiastic attention the first two books get because of its lack of compelling narratives as are found "In the beginning" through the exodus from Egypt. Vayikra has going for it some of the most compelling rules on which to build a society. It also has an escape clause, a rule that essentially says, you can break almost any of these hard and fast rules in order to save a life, pikuach nefesh, the highest value. Chai bahem, live by them is interpreted to mean, don't die for the sake of following these laws. Not that I purport to be a halachic Jew, but waking up Saturday morning, I was looking forward to a quiet Shabbat. It immediately became a pikuach nefesh day.
Faina had not been feeling well most of the week. She had a few uncomfortable nights and was finding it increasingly difficult to get her pills down or to keep them down. Friday night was a new level of difficult and matters digressed over the night with the sunrise bringing pain and an inability to take the analgesics that would relieve it. This was "No Messing Around" time.
A few things were thrown quickly into a bag. We hopped in the car and sped along to Howard County General Hospital. Red lights became yield signs. There were plenty of parking spaces outside of the Emergency room at that quiet, chilly, early hour. Then came hospital bureaucracy, a form to fill out, the triage nurse, waiting for a bed to be cleared, the appearance of Dr. Martinez, and finally the first of many IV doses of Dilaudid. Pretty soon Faina progressed to 4 mg/hour and the pain receded. The doses consistently wore off before the hours ran out so I became the yenta-in-chief to various nurses. By sunset, she had been admitted to the hospital's 4th floor oncology wing. Saturday night was another long night, but of a different nature. Faina received a lot of attention. Sleep, wake-up in pain, get a dose of hydromorphone, repeat.
a
Sunday was a better day. It looks like there will be no return to the pain pills. Analgesic medication will be through IV while in the hospital and upon discharge. The pain management specialist wanted to start Faina with a Fentanyl patch. Despite us telling him that we have tried those, up to the maximum dosage, and they have been totally ineffective he was insistent. She now has a Fentanyl patch. She was also started with a pump delivering a steady dose of the Dilaudid which Faina can boost by pushing a button. She has added a few medications to her pharmacopia, but the IV pain killers are what this hospital visit was all about. She is finally sleeping easily.
My ordinances ... which if a person does, they shall live by them (Vayikra 18:5)
The third book of the Torah does not get the enthusiastic attention the first two books get because of its lack of compelling narratives as are found "In the beginning" through the exodus from Egypt. Vayikra has going for it some of the most compelling rules on which to build a society. It also has an escape clause, a rule that essentially says, you can break almost any of these hard and fast rules in order to save a life, pikuach nefesh, the highest value. Chai bahem, live by them is interpreted to mean, don't die for the sake of following these laws. Not that I purport to be a halachic Jew, but waking up Saturday morning, I was looking forward to a quiet Shabbat. It immediately became a pikuach nefesh day.
Faina had not been feeling well most of the week. She had a few uncomfortable nights and was finding it increasingly difficult to get her pills down or to keep them down. Friday night was a new level of difficult and matters digressed over the night with the sunrise bringing pain and an inability to take the analgesics that would relieve it. This was "No Messing Around" time.
A few things were thrown quickly into a bag. We hopped in the car and sped along to Howard County General Hospital. Red lights became yield signs. There were plenty of parking spaces outside of the Emergency room at that quiet, chilly, early hour. Then came hospital bureaucracy, a form to fill out, the triage nurse, waiting for a bed to be cleared, the appearance of Dr. Martinez, and finally the first of many IV doses of Dilaudid. Pretty soon Faina progressed to 4 mg/hour and the pain receded. The doses consistently wore off before the hours ran out so I became the yenta-in-chief to various nurses. By sunset, she had been admitted to the hospital's 4th floor oncology wing. Saturday night was another long night, but of a different nature. Faina received a lot of attention. Sleep, wake-up in pain, get a dose of hydromorphone, repeat.
a
Sunday was a better day. It looks like there will be no return to the pain pills. Analgesic medication will be through IV while in the hospital and upon discharge. The pain management specialist wanted to start Faina with a Fentanyl patch. Despite us telling him that we have tried those, up to the maximum dosage, and they have been totally ineffective he was insistent. She now has a Fentanyl patch. She was also started with a pump delivering a steady dose of the Dilaudid which Faina can boost by pushing a button. She has added a few medications to her pharmacopia, but the IV pain killers are what this hospital visit was all about. She is finally sleeping easily.
Saturday, February 19, 2011
Rabbinic Wisdom and Pain Management
For pain in the stomach he should take three hundred long pepper grains and every day drink a hundred of them in wine. (Talmud: Gittin 69b)
After a few days of comfort, energy, and enthusiasm to go about in the world, things have been like a computer with way too many windows open at once. There has been a system crash. Faina has been in pain and the medications have at best tamped down level eight or nine pain to four or five. There have been a few nights that, were it not for Ambien, Oxycotyn and Oxycodone would have been totally sleepless. Since the slice of lemon-poppy loaf cake on Tuesday, there has been no wading into the pool of oral intake of food. Pure TPN nutrition (IV) and the monthly B12 injection.
The rabbis of the Talmud thought they had the solution. Their prescription of pepper grains and wine would not have been helpful in any way, but I won't sell those sages short. I have seen their wisdom come through:
"Abba son of Hanina said: One who visits an the sick takes away a sixtieth of their pain" (Talmud: Nedarim 39b). It was almost a miracle, in and of itself, but Faina was up to a visit from Rabbi Kahn yesterday. She got her energy up for seeing him and the conversation was restorative.
Rabbi Kahn has played a special role for Faina. After her introduction to the rabbinate, in the form of Israeli Orthodox rabbis and the influence they have in that society, Bruce was a radical alternative. She got to know him best when we met with him for several sessions of pre-marital counseling. He also officiated at our wedding which took place at what was already a museum, the Lloyd Street Synagogue.
Visiting takes many forms, particularly in today's world. Whittling away a the pain is a mitzvah. Special guests in our house tonight are a challah, lovingly baked by Janice, and an apple crisp, equally flavored with rachmanut, from Marilyn. The math is challenging, but imagine one-sixtieth of 59-sixtieths and then one-sixtieth taken away from that. Whittle away and whittle away.
After a few days of comfort, energy, and enthusiasm to go about in the world, things have been like a computer with way too many windows open at once. There has been a system crash. Faina has been in pain and the medications have at best tamped down level eight or nine pain to four or five. There have been a few nights that, were it not for Ambien, Oxycotyn and Oxycodone would have been totally sleepless. Since the slice of lemon-poppy loaf cake on Tuesday, there has been no wading into the pool of oral intake of food. Pure TPN nutrition (IV) and the monthly B12 injection.
The rabbis of the Talmud thought they had the solution. Their prescription of pepper grains and wine would not have been helpful in any way, but I won't sell those sages short. I have seen their wisdom come through:
"Abba son of Hanina said: One who visits an the sick takes away a sixtieth of their pain" (Talmud: Nedarim 39b). It was almost a miracle, in and of itself, but Faina was up to a visit from Rabbi Kahn yesterday. She got her energy up for seeing him and the conversation was restorative.
Rabbi Kahn has played a special role for Faina. After her introduction to the rabbinate, in the form of Israeli Orthodox rabbis and the influence they have in that society, Bruce was a radical alternative. She got to know him best when we met with him for several sessions of pre-marital counseling. He also officiated at our wedding which took place at what was already a museum, the Lloyd Street Synagogue.
Visiting takes many forms, particularly in today's world. Whittling away a the pain is a mitzvah. Special guests in our house tonight are a challah, lovingly baked by Janice, and an apple crisp, equally flavored with rachmanut, from Marilyn. The math is challenging, but imagine one-sixtieth of 59-sixtieths and then one-sixtieth taken away from that. Whittle away and whittle away.
Wednesday, February 16, 2011
Rabbinic Comfort Food
Faina has been rediscovering the foods she enjoyed growing up. We just made a more authentic version of ленивые вареники (lenevie vareniki - lazy dumplings) with farmers cheese from the Russian store, had some caviar (unaccompanied by a shot of distilled beverage), and cooked up a fresh pot of chicken soup. In a similar vein, Faina brought up a spiritual reaching back to a more youthful time, proposing meeting with a rabbi. Dr. K has been suggesting we pursue this spiritual side of healing almost from our first meeting.
Growing up in the Soviet Union, Faina had no contact with rabbis. Her six years in Israel did nothing to convince her that she had any need to have one be a part of her life. If anything, rabbis in the holy land had the opposite effect. Of the five rabbis I have worked most closely with Bruce Kahn was the first. He officiated at our wedding and his wisdom has had the most lasting influence on us. We are getting together with him later this week.
We had a scheduled meeting with Dr. K on Monday. Faina had had a rough week last week. The chemo is usually awful the first seven or eight days and then things settle down. It was not the case this last cycle and she was not feeling at all ok until the weekend. Faina suggested that rather than resume the chemo on Tuesday that we postpone it a week. Dr. K was enthusiastic about her taking a week off, thought it was a good idea.
Feeling better in all senses, we took in a movie (No Strings Attached). The following day Faina felt ready to eat and Margo fried up an egg. Faina made it disappear. This usually leads to a sort of hibernation-discomfort-digestion period, but all went well and an exceptionally uneventful hour followed. Later, we took a walk at Lake Elkhorn, enjoying particularly the pleasant weather and the antics of a flock of geese. A little later in the day, emboldened by the earlier gustatory experience, Faina wanted a piece of cake. Give her credit for her sense of adventure, but this did not go down well and she spent the rest of the evening regretting her ingestational assertiveness. Tomorrow's another day.
Growing up in the Soviet Union, Faina had no contact with rabbis. Her six years in Israel did nothing to convince her that she had any need to have one be a part of her life. If anything, rabbis in the holy land had the opposite effect. Of the five rabbis I have worked most closely with Bruce Kahn was the first. He officiated at our wedding and his wisdom has had the most lasting influence on us. We are getting together with him later this week.
We had a scheduled meeting with Dr. K on Monday. Faina had had a rough week last week. The chemo is usually awful the first seven or eight days and then things settle down. It was not the case this last cycle and she was not feeling at all ok until the weekend. Faina suggested that rather than resume the chemo on Tuesday that we postpone it a week. Dr. K was enthusiastic about her taking a week off, thought it was a good idea.
Feeling better in all senses, we took in a movie (No Strings Attached). The following day Faina felt ready to eat and Margo fried up an egg. Faina made it disappear. This usually leads to a sort of hibernation-discomfort-digestion period, but all went well and an exceptionally uneventful hour followed. Later, we took a walk at Lake Elkhorn, enjoying particularly the pleasant weather and the antics of a flock of geese. A little later in the day, emboldened by the earlier gustatory experience, Faina wanted a piece of cake. Give her credit for her sense of adventure, but this did not go down well and she spent the rest of the evening regretting her ingestational assertiveness. Tomorrow's another day.
Saturday, February 12, 2011
True Blood
When you then slaughter the ram, take its blood and place some of it on the right ear lobe of Aaron and his sons, as well as on their right thumbs and their right big toes. (Shemot 29:20)
It is interesting that this week's parsha has a reference to blood. It is describing the ceremony for consecrating the priests, Aaron, the high priest, and his sons. The ritual can be understood that a person should be a good listener, responsible for what they do, and thoughtful as they go about life's journey.
On Wednesday, Faina got a blood transfusion. She had been anemic for several weeks and the time came for a significant response to the low RBC (red blood cell) count. Even though her blood type is well documented, we had to go in the day before for a blood test. This is SOP as a mismatch is deadly.
The phlebotomist who did the test was, thankfully, patient and skillful. A vein did not appear with the first standard measures, but Agnes, obviously was not new to this line of work. A few taps at various points on the arm, a hot pack, cycles of squeezing the sponge ball, relaxing, another hot pack and, like a balloon being inflated, a healthy vein bulged to the surface. Even with the needle skillfully placed, the vial did not fill very quickly, but Agnes encouraged a recalcitrant circulatory system and finally an adequate sample was drawn.
The next day was the transfusion. We got to the hospital at 7:30 a.m. and everything proceeded smoothly. Two out of the three nurses working the ward were cheerful and friendly. Faina was being taken care of by the third. The hours passed fairly quickly, Faina burning through a double issue of the New Yorker and catching a few winks. I got started on Cleopatra. We had seen the author interviewed when we went to the Daily Show back in December. That feels like a lifetime ago. We also had a visitor. Larisa, a gastric cancer survivor who Faina has been in touch with for over a year, took time away from her lab work in the hospital to see how we were doing. It was a pleasant distraction.
Faina has now had two significantly better days. Better energy and even a semblance of an appetite. She had some mashed potatoes and a spoonful of caviar.
Shabbat Shalom
It is interesting that this week's parsha has a reference to blood. It is describing the ceremony for consecrating the priests, Aaron, the high priest, and his sons. The ritual can be understood that a person should be a good listener, responsible for what they do, and thoughtful as they go about life's journey.
On Wednesday, Faina got a blood transfusion. She had been anemic for several weeks and the time came for a significant response to the low RBC (red blood cell) count. Even though her blood type is well documented, we had to go in the day before for a blood test. This is SOP as a mismatch is deadly.
The phlebotomist who did the test was, thankfully, patient and skillful. A vein did not appear with the first standard measures, but Agnes, obviously was not new to this line of work. A few taps at various points on the arm, a hot pack, cycles of squeezing the sponge ball, relaxing, another hot pack and, like a balloon being inflated, a healthy vein bulged to the surface. Even with the needle skillfully placed, the vial did not fill very quickly, but Agnes encouraged a recalcitrant circulatory system and finally an adequate sample was drawn.
The next day was the transfusion. We got to the hospital at 7:30 a.m. and everything proceeded smoothly. Two out of the three nurses working the ward were cheerful and friendly. Faina was being taken care of by the third. The hours passed fairly quickly, Faina burning through a double issue of the New Yorker and catching a few winks. I got started on Cleopatra. We had seen the author interviewed when we went to the Daily Show back in December. That feels like a lifetime ago. We also had a visitor. Larisa, a gastric cancer survivor who Faina has been in touch with for over a year, took time away from her lab work in the hospital to see how we were doing. It was a pleasant distraction.
Faina has now had two significantly better days. Better energy and even a semblance of an appetite. She had some mashed potatoes and a spoonful of caviar.
Shabbat Shalom
Wednesday, February 9, 2011
4 a.m.
Four in the morning
crapped out, yawning (Paul Simon)
Last week, Margo shared this clip with me "Rives on 4 a.m" (http://www.ted.com/talks/lang/eng/rives_on_4_a_m.html) It is an engaging exploration of this deadest hour in the dead of the night. Going beyond Rives, I now know that SAA NNE is 4 in the morning in Swahili. Mirabilis Jalapa is a variety of the 4 o'clock plant (its flower opens up nocturnally and closes diurnally) and when a phenomenon is called to your attention, you suddenly take notice of it as it appears and reappears. I'm now far more aware of how often I am awake at 4 a.m.
Faina woke me up last night at 4 a.m. She was in pain, congested, agitated, and despairing. We explored her evolving pharmacopoeia and one of the medications I had been reading about earlier in the day, hydroxyzine was my suggestion. Will Shortz would have noticed it for the same reason I did, having the name of a cookie and the letters XYZ consecutively in its name. It was also first synthesised in the year Faina and I were born. Above all, it is remarkably effective as an antihistamine, analgesic, and a sedative. Everything we needed all in a 20 mg package. Here is what it looks like chemically:
-Hydroxyzine_Structural_Formulae.png)
I held Faina in my arms, helping her calm down, giving the meds some time. On the clock, I saw 4:32, 4:44 and 4:56. After about an hour she drifted off to sleep.
At that point, I was quite wired. I did a load of laundry, answered a few emails, paid a bill, made a donation, and, realizing that I would not likely be waking up before 8:00, took out the garbage. It was a beautiful moonless night. The storm clouds were gone and the stars shone bright. It was easy to spot Ursa Major heading up the driveway and Orion on the way back. It is delightfully quiet at that hour, like being that first astronaut to step out of the LEM, "That's one small step ... " At this point it was game on. I brewed a cup of coffee, fed the cats and checked to see if Jamie was up. She wasn't, but she sounded worse than she did hours ago at bedtime, so I let her go back to sleep and take a sick day.
Later in the day, I took Faina to HoCo General for a blood test. She is getting a transfusion tomorrow, so it was necessary to identify her blood type. Unsurprisingly, it was hard to get a vein. Fortunately, the phlebotomist had patience, skill, and a few tricks up her sleeve. As Faina was mentally preparing herself to be subject to physical abuse, the procedure proved to be minimally painful. Immediately afterward, the room was filled with a collective sigh of relief. Faina made sure to communicate to the woman that her ability to rise to a challenge was recognized. We made our way to the car, barely feeling the 32 degree chill or the 40 MPH winds.
crapped out, yawning (Paul Simon)
Last week, Margo shared this clip with me "Rives on 4 a.m" (http://www.ted.com/talks/lang/eng/rives_on_4_a_m.html) It is an engaging exploration of this deadest hour in the dead of the night. Going beyond Rives, I now know that SAA NNE is 4 in the morning in Swahili. Mirabilis Jalapa is a variety of the 4 o'clock plant (its flower opens up nocturnally and closes diurnally) and when a phenomenon is called to your attention, you suddenly take notice of it as it appears and reappears. I'm now far more aware of how often I am awake at 4 a.m.
Faina woke me up last night at 4 a.m. She was in pain, congested, agitated, and despairing. We explored her evolving pharmacopoeia and one of the medications I had been reading about earlier in the day, hydroxyzine was my suggestion. Will Shortz would have noticed it for the same reason I did, having the name of a cookie and the letters XYZ consecutively in its name. It was also first synthesised in the year Faina and I were born. Above all, it is remarkably effective as an antihistamine, analgesic, and a sedative. Everything we needed all in a 20 mg package. Here is what it looks like chemically:
I held Faina in my arms, helping her calm down, giving the meds some time. On the clock, I saw 4:32, 4:44 and 4:56. After about an hour she drifted off to sleep.
At that point, I was quite wired. I did a load of laundry, answered a few emails, paid a bill, made a donation, and, realizing that I would not likely be waking up before 8:00, took out the garbage. It was a beautiful moonless night. The storm clouds were gone and the stars shone bright. It was easy to spot Ursa Major heading up the driveway and Orion on the way back. It is delightfully quiet at that hour, like being that first astronaut to step out of the LEM, "That's one small step ... " At this point it was game on. I brewed a cup of coffee, fed the cats and checked to see if Jamie was up. She wasn't, but she sounded worse than she did hours ago at bedtime, so I let her go back to sleep and take a sick day.
Later in the day, I took Faina to HoCo General for a blood test. She is getting a transfusion tomorrow, so it was necessary to identify her blood type. Unsurprisingly, it was hard to get a vein. Fortunately, the phlebotomist had patience, skill, and a few tricks up her sleeve. As Faina was mentally preparing herself to be subject to physical abuse, the procedure proved to be minimally painful. Immediately afterward, the room was filled with a collective sigh of relief. Faina made sure to communicate to the woman that her ability to rise to a challenge was recognized. We made our way to the car, barely feeling the 32 degree chill or the 40 MPH winds.
Thursday, February 3, 2011
Tahrir Square
We have been following events in Egypt closely. We've spoken to nervous friends and family in Israel, checked out a variety of news outlets including Israeli and Russian sources, and pored over our morning papers. Today, what seemed to be a peaceful "people power" revolution turned violent with rocks, Molotov cocktails, fists and bullets flying. All of this paralleled our day which dawned with relative tranquility.
Faina was in good spirits in the AM. Other than an uncomfortable tingling in her fingers, she woke up with good energy, replied to a few emails from patients, enjoyed watching a few deer passing through our back yard, and became hungry for ленивые вареники (Lazy Dumplings), Russian comfort food. We had a regular cooking show project going on in our kitchen, guided by a quick consult with Tatiana's mom, Lydia. Shortly afterwards, Faina tuned into a favorite soap opera and talked of us making a trip to the hardware store a little later.
Late afternoon was all Tahrir Square. Agitated, nervous, and an unstoppable heartburn came back with a vengeance. She took as many pharmaceuticals as she could, pushing the limits a little, with only temporary relief, at best. This went on for hours. She did not find quiet or sleep until, as we were being told by a slightly battered Anderson Cooper, dawn was breaking in Cairo.
I hope tomorrow is a better day for both the people of the Nile Valley and us of the Maryland Piedmont.
Faina was in good spirits in the AM. Other than an uncomfortable tingling in her fingers, she woke up with good energy, replied to a few emails from patients, enjoyed watching a few deer passing through our back yard, and became hungry for ленивые вареники (Lazy Dumplings), Russian comfort food. We had a regular cooking show project going on in our kitchen, guided by a quick consult with Tatiana's mom, Lydia. Shortly afterwards, Faina tuned into a favorite soap opera and talked of us making a trip to the hardware store a little later.
Late afternoon was all Tahrir Square. Agitated, nervous, and an unstoppable heartburn came back with a vengeance. She took as many pharmaceuticals as she could, pushing the limits a little, with only temporary relief, at best. This went on for hours. She did not find quiet or sleep until, as we were being told by a slightly battered Anderson Cooper, dawn was breaking in Cairo.
I hope tomorrow is a better day for both the people of the Nile Valley and us of the Maryland Piedmont.
Tuesday, February 1, 2011
It's About Time
We are at the oncology center. The sound system is schizophrenic, sometimes playing pure muzak, occasionally light pop tunes, but at the moment it is some dreamy new age vibe. Women patients outnumber the men, seven to two. Today is the first day of a new chemo cycle. Usually, Faina starts to feel the discomfort within the first few hours, generally a painful tingling in the finger. It builds over the first few days, peaks, and leaves her feeling "toxic" or "poisoned" for about a week. I look forward to that second week, especially the last days when Faina's energy level is higher. We did not get much of a bump last week, but she did enjoy a drive and running a few errands. She did bravely venture into direct nutrition, some yogurt, chicken soup, oatmeal, rice. Visualize about two tablespoons as a meal every two hours. She eats and then sits for at least 30 minutes letting it work its way, uncomfortably, through her system. Understood as reward vs. punishment, it is a punishing experience, but Faina hopes to get off of TPN some day and so she endures.
The time we spend together is precious. Looking at the hours that we are in doctors' offices, in clinics, in traffic, reading, watching TV-movies-news, reading, and in quiet repose, I wonder about this concept we have for fixing events in sequence and duration.
The first place I like to turn to for a point of reference is in sacred text, pursuing a Biblical view of time. Obstacles are translation/interpretation and our cultural understanding of this construct. While one translation renders a phrase in Bereshit/Genesis 1:14 as "sacred times,"a more faithful reading is more specific "festivals, days, and years." A verse appearing, a few chapters later, is regularly related as, "In the course of time" (4:3). A more accurate reading is "It was the end of days" (in the sense of the end of an era). One other example calls Noah (6:9) "blameless in his time" while a more literal understanding is "faultless in his generation" (6:9). One of the last mentions of "time" in the Torah, "a long time" (Devarim 20:19) is really "yamim rabbim" (many days). This gives a sense that the term "time" is casually and imprecisely used to to stand for anything ranging, based on these examples, from a milestone monent, the period of one revolution of the earth, on to many revolutions of the sun. My account covers "time" based on those terms, but really how could it not, so it is time to find another sponsor.
My favorite philosopher, Martin Heidegger writes, "The Being of time is the 'now'." This is how time is best experienced, in the immediate moment. He goes on to say that "'now' ... is-no-longer ... (and) ...is-not-yet." This strikes me as the great challenge of all-time and especially era in which we live. Do we diminish the "now" with the imposition of the past and the future? Does our hyperkinetic 21st century society make living in the "now" an old fashioned artifact or does it just add degrees of difficulty to achieving that state of Being? I'll take this as a challenge to really mean it when I say, "I'm here for you." It is a V'Ahavta'esque "B'chol livavcha, u'vchol nafshicha, u'vchol m'odecha" (with all your heart, with all your soul, and with all your might) being present.
Time to go. There is tea to be brewed, a hand to hold, and a presence to be experienced.
The time we spend together is precious. Looking at the hours that we are in doctors' offices, in clinics, in traffic, reading, watching TV-movies-news, reading, and in quiet repose, I wonder about this concept we have for fixing events in sequence and duration.
The first place I like to turn to for a point of reference is in sacred text, pursuing a Biblical view of time. Obstacles are translation/interpretation and our cultural understanding of this construct. While one translation renders a phrase in Bereshit/Genesis 1:14 as "sacred times,"a more faithful reading is more specific "festivals, days, and years." A verse appearing, a few chapters later, is regularly related as, "In the course of time" (4:3). A more accurate reading is "It was the end of days" (in the sense of the end of an era). One other example calls Noah (6:9) "blameless in his time" while a more literal understanding is "faultless in his generation" (6:9). One of the last mentions of "time" in the Torah, "a long time" (Devarim 20:19) is really "yamim rabbim" (many days). This gives a sense that the term "time" is casually and imprecisely used to to stand for anything ranging, based on these examples, from a milestone monent, the period of one revolution of the earth, on to many revolutions of the sun. My account covers "time" based on those terms, but really how could it not, so it is time to find another sponsor.
My favorite philosopher, Martin Heidegger writes, "The Being of time is the 'now'." This is how time is best experienced, in the immediate moment. He goes on to say that "'now' ... is-no-longer ... (and) ...is-not-yet." This strikes me as the great challenge of all-time and especially era in which we live. Do we diminish the "now" with the imposition of the past and the future? Does our hyperkinetic 21st century society make living in the "now" an old fashioned artifact or does it just add degrees of difficulty to achieving that state of Being? I'll take this as a challenge to really mean it when I say, "I'm here for you." It is a V'Ahavta'esque "B'chol livavcha, u'vchol nafshicha, u'vchol m'odecha" (with all your heart, with all your soul, and with all your might) being present.
Time to go. There is tea to be brewed, a hand to hold, and a presence to be experienced.
Thursday, January 20, 2011
Tinker to Evers to Chance
I just left behind a beautiful scene, Faina snuggled in bed, sandwiched in between Margo and Jamie, giving an account of the past two days. She started a new cycle of chemo today and is carrying the pump pack for the 46 hours of fluorouricil (5-FU). It is a little after 9:00 pm and we just returned from an appointment with Dr. Gertner. Margo once again took care of the TPN so at the moment, Faina has chemo flowing into her right arm and nutrition streaming into her left.
Faina has been encouraged to try eating. It is a tough challenge when the zone from tongue to the last stop on the intestinal freeway feels like an ongoing napalm attack. She had some chicken soup, a few hours later a little bit of Kefir, and several hours later, some rice pudding. It is amazing when ingesting a forkful represents a leap of faith and an expression of bravery. She generally has to lie down for a half hour after even a quarter of a cup of food.
The scoop on some of the doctors visits -
Dr. Schulick - There is no surgical solution to the intestinal problems. HER-2/neu test results - Negative. This is a disappointment. It means she is not a candidate for a new drug, Herceptin, recently approved for recurrent gastric cancer.
Dr. Narayen - checked out the abdominal x-rays that were taken over the weekend. He said there is no blockage in the intestines and suspects that the cancer in the peritoneum (the lining of the abdominal cavity) is interfering with the motility of the intestines, that is, the ability of the intestines to flex and move food through them. He wrote prescriptions, suggested an over the counter product, and advised raising the head of the bed so gravity could help move things along.
Dr. K. - Some serious weirdness here. At one point in the conversation he suggested Faina go off the chemotherapy altogether. The implications are obvious. That proposal was a non-starter. Then for Faina's intestinal discomfort he suggested a G-tube, essentially a pressure valve. We also scheduled Wednesday's chemo.
Prescription slip in hand, I went back upstairs to Dr. N's office to set up this procedure. I spent all of about 30 seconds in the waiting room when, at his request, his secretary ushered me into his office. He told me that he could not insert a G-tube since Faina does not have a G, as in Gastric - "of and related to the stomach." He begged off attempting to do the procedure to the intestines, being honest in saying it would be beyond his capabilities. (Dr. K called later, somewhat embarrassed, realizing the lack of G for a G-tube.)
We were undeterred by this obstacle. In the car, on the way home, we called Dr. Gertner and set up today's appointment. Dr. G is a story in and of himself and figures prominently in this 21 month journey, but I will let that narrative sit for now. Suffice to say, we have well placed, enormous confidence in him. He looked at the CT scan and the abdominal x-ray, did his own sonogram and said he was confident he could laparoscopically run a tube for decompression. He ordered a "Small Bowel Series." This story is to be continued.
It has been a rough night with Faina up every half-hour or so. She's taken Oxycontyn. She's taken Ambien. Time to check her and maybe catch a few Zzzzzz.
Faina has been encouraged to try eating. It is a tough challenge when the zone from tongue to the last stop on the intestinal freeway feels like an ongoing napalm attack. She had some chicken soup, a few hours later a little bit of Kefir, and several hours later, some rice pudding. It is amazing when ingesting a forkful represents a leap of faith and an expression of bravery. She generally has to lie down for a half hour after even a quarter of a cup of food.
The scoop on some of the doctors visits -
Dr. Schulick - There is no surgical solution to the intestinal problems. HER-2/neu test results - Negative. This is a disappointment. It means she is not a candidate for a new drug, Herceptin, recently approved for recurrent gastric cancer.
Dr. Narayen - checked out the abdominal x-rays that were taken over the weekend. He said there is no blockage in the intestines and suspects that the cancer in the peritoneum (the lining of the abdominal cavity) is interfering with the motility of the intestines, that is, the ability of the intestines to flex and move food through them. He wrote prescriptions, suggested an over the counter product, and advised raising the head of the bed so gravity could help move things along.
Dr. K. - Some serious weirdness here. At one point in the conversation he suggested Faina go off the chemotherapy altogether. The implications are obvious. That proposal was a non-starter. Then for Faina's intestinal discomfort he suggested a G-tube, essentially a pressure valve. We also scheduled Wednesday's chemo.
Prescription slip in hand, I went back upstairs to Dr. N's office to set up this procedure. I spent all of about 30 seconds in the waiting room when, at his request, his secretary ushered me into his office. He told me that he could not insert a G-tube since Faina does not have a G, as in Gastric - "of and related to the stomach." He begged off attempting to do the procedure to the intestines, being honest in saying it would be beyond his capabilities. (Dr. K called later, somewhat embarrassed, realizing the lack of G for a G-tube.)
We were undeterred by this obstacle. In the car, on the way home, we called Dr. Gertner and set up today's appointment. Dr. G is a story in and of himself and figures prominently in this 21 month journey, but I will let that narrative sit for now. Suffice to say, we have well placed, enormous confidence in him. He looked at the CT scan and the abdominal x-ray, did his own sonogram and said he was confident he could laparoscopically run a tube for decompression. He ordered a "Small Bowel Series." This story is to be continued.
It has been a rough night with Faina up every half-hour or so. She's taken Oxycontyn. She's taken Ambien. Time to check her and maybe catch a few Zzzzzz.
Friday, January 14, 2011
Marching Orders
It has now been a second week of delay on resuming the chemo.
It has finally happened, they don't ask for my name at the pharmacist. I would rather be known at the local pub.
Yet another specialist has entered the narrative. Yesterday we met with Dr. Narayen at Digestive Disease Associates P.A. One of his colleagues was suggested to us, but given the time sensitive need to get in to a gastroenterologist and her unavailability until February, we took the appointment we could get. Dr. N turned out to be impressive in skill and ability to explain what he thinks is going on. He was confident that the intestines were not completely blocked and that there is an as yet unidentified a mass on the lower right side of the abdomen. Immediate marching orders: 1) Liquid diet only!; 2) Stop taking some of the over-the-counter laxatives, they can cause more pressure on the system and bring about the rupture that would be disasterous; 3) Ease back on the pain meds, they aggrivate the blockage; 4) Get an abdominal X-Ray in the next few days; and 5) Come back next Tuesday. Surgery is prettty much not an option. The goal is to get the chemo started again. It's a plan.
My parents stopped by yesterday. Mom brought the ingredients for chicken soup and got busy in the kitchen.
Margo did all of the set-up of the TPN last night. I had taught her how two nights earlier and this time, all I had to do was sit back and watch. Faina appreciated the new skill set.
Some of the next big things coming up: The first Shabbat dinner with and for our guest Emmalene. Getting through the weekend. Tuesday appointments - Dr. Schulick (Hopkins), Dr. N., and Dr. K. Going from there.
It has finally happened, they don't ask for my name at the pharmacist. I would rather be known at the local pub.
Yet another specialist has entered the narrative. Yesterday we met with Dr. Narayen at Digestive Disease Associates P.A. One of his colleagues was suggested to us, but given the time sensitive need to get in to a gastroenterologist and her unavailability until February, we took the appointment we could get. Dr. N turned out to be impressive in skill and ability to explain what he thinks is going on. He was confident that the intestines were not completely blocked and that there is an as yet unidentified a mass on the lower right side of the abdomen. Immediate marching orders: 1) Liquid diet only!; 2) Stop taking some of the over-the-counter laxatives, they can cause more pressure on the system and bring about the rupture that would be disasterous; 3) Ease back on the pain meds, they aggrivate the blockage; 4) Get an abdominal X-Ray in the next few days; and 5) Come back next Tuesday. Surgery is prettty much not an option. The goal is to get the chemo started again. It's a plan.
My parents stopped by yesterday. Mom brought the ingredients for chicken soup and got busy in the kitchen.
Margo did all of the set-up of the TPN last night. I had taught her how two nights earlier and this time, all I had to do was sit back and watch. Faina appreciated the new skill set.
Some of the next big things coming up: The first Shabbat dinner with and for our guest Emmalene. Getting through the weekend. Tuesday appointments - Dr. Schulick (Hopkins), Dr. N., and Dr. K. Going from there.
Tuesday, January 11, 2011
Playing Chicken
Faina enjoyed a basket I brought home from last night's Religious School Committee meeting. Everyone had pitched in and obviously people have been reading this blog. The choice of a DVD of "I Love Lucy" was beyond brilliant. I have long appreciated how my darling wife is a combination of the naturalized citizen-uniquely talented-bandleader Ricky and the vivacious-adventurous-live-for-the-moment Lucy.
It was a good cap on an interesting day. First thing in the morning, after a miserable weekend, Faina called Dr. K's office. Their answer was, where have you been, you have a 9:00 appointment. Actually, the appointment had been cancelled last week, just someone had failed to delete it from the schedule. That aside, there was an opening at 9:30, so the question became can you get here by then, so it was hustle out the door. The appointment was a touch on the surreal side. Dr. K said that the problem was likely a kink in the intestines, something not unusual for someone who had undergone several surgeries in the abdominal cavity. He said to stick to a clear liquid diet for the next few days and the next cycle of chemo would be postponed to the following week. Then somewhat spontaneously, with some concern for dehydration, Dr. K recommended Faina get a two liter infusion of saline solution, with an antacid chaser. At the rate of a drip, that meant an unplanned three hours of drip, drip, drip. This led to thoughts on my part of: the Chinese Water Torture (apologies if there is a more PC phrasing of that cliche), the books I habitually keep in my car-but we had taken Faina's, the fully charged laptop sitting by my desk, the NYT languishing in our driveway, and appreciation for my Crackberry. At about 1:00 we get home and Marianne, the home health care nurse, is waiting, having arrived a little early, and wondering to where we had disappeared.
Next up was a series of phone calls.
First an idea inspired by a seeming inability on the part of Hopkins to test tissue samples for HER2 positive status: We called Dr. H, the gastroenterologist who performed the endoscopy, at Faina's urging, that discovered the gastric cancer 20 months ago. His administrator said that he was away on vacation and would get back to us, meanwhile they will check to see if they still have a tissue sample.
Then Faina connected with her worldwide network of physician friends. Dr. I, in the Netherlands, was aghast at the lack of aggressive treatment for the inflamed colon or the blocked intestines. She cautioned that a rupture and peritonitis would complicate everything else with which we are dealing.
The next physician conversation was with Dr. K who said that he recommended we speak with a gastroenterologist. Neither of us heard him offer that advice at that morning's appointment. Whatever! Well, our original gastroman is away, so we called Dr. K's recommendation, Dr. M who as luck would have it is also on vacation; perhaps she is with Dr. H. So, knowing that time really is of the essence, we took the first appointment we could get, with an associate, on Thursday.
When I got home from the RSC meeting, it was time to feed Faina, or more accurately, to set up her intravenous nutrition. After adding the vitamins, setting up the pump ... I go to flush her PICC line and it is completely blocked. I even switch out the "positive pressure valve" and still no success. I finally go to the alternative line and that works. Yay! It wasn't panic time, but with no other source of nutrition, getting the TPN started was not unimportant.
And there was evening and there was morning, another day.
It was a good cap on an interesting day. First thing in the morning, after a miserable weekend, Faina called Dr. K's office. Their answer was, where have you been, you have a 9:00 appointment. Actually, the appointment had been cancelled last week, just someone had failed to delete it from the schedule. That aside, there was an opening at 9:30, so the question became can you get here by then, so it was hustle out the door. The appointment was a touch on the surreal side. Dr. K said that the problem was likely a kink in the intestines, something not unusual for someone who had undergone several surgeries in the abdominal cavity. He said to stick to a clear liquid diet for the next few days and the next cycle of chemo would be postponed to the following week. Then somewhat spontaneously, with some concern for dehydration, Dr. K recommended Faina get a two liter infusion of saline solution, with an antacid chaser. At the rate of a drip, that meant an unplanned three hours of drip, drip, drip. This led to thoughts on my part of: the Chinese Water Torture (apologies if there is a more PC phrasing of that cliche), the books I habitually keep in my car-but we had taken Faina's, the fully charged laptop sitting by my desk, the NYT languishing in our driveway, and appreciation for my Crackberry. At about 1:00 we get home and Marianne, the home health care nurse, is waiting, having arrived a little early, and wondering to where we had disappeared.
Next up was a series of phone calls.
First an idea inspired by a seeming inability on the part of Hopkins to test tissue samples for HER2 positive status: We called Dr. H, the gastroenterologist who performed the endoscopy, at Faina's urging, that discovered the gastric cancer 20 months ago. His administrator said that he was away on vacation and would get back to us, meanwhile they will check to see if they still have a tissue sample.
Then Faina connected with her worldwide network of physician friends. Dr. I, in the Netherlands, was aghast at the lack of aggressive treatment for the inflamed colon or the blocked intestines. She cautioned that a rupture and peritonitis would complicate everything else with which we are dealing.
The next physician conversation was with Dr. K who said that he recommended we speak with a gastroenterologist. Neither of us heard him offer that advice at that morning's appointment. Whatever! Well, our original gastroman is away, so we called Dr. K's recommendation, Dr. M who as luck would have it is also on vacation; perhaps she is with Dr. H. So, knowing that time really is of the essence, we took the first appointment we could get, with an associate, on Thursday.
When I got home from the RSC meeting, it was time to feed Faina, or more accurately, to set up her intravenous nutrition. After adding the vitamins, setting up the pump ... I go to flush her PICC line and it is completely blocked. I even switch out the "positive pressure valve" and still no success. I finally go to the alternative line and that works. Yay! It wasn't panic time, but with no other source of nutrition, getting the TPN started was not unimportant.
And there was evening and there was morning, another day.
Monday, January 10, 2011
Ebb and Flow
Friday morning started off with a boost for the spirits. We stopped by Faina's office for some dental care. It is always a delight to see Faina in an environment that has long brought her great joy. She enjoys the atmosphere of that busy practice and the chance to connect with her colleagues. It was good to run into Dr. W. and to personally thank him for a particularly well timed bouquet. The mood changed in the car on the way home. Faina suffered from the thought of the life she has built for our family and herself and the randomness of the disease that has come to afflict her. We tried to take a walk at Lake Elkorn, but it was just too cold, even properly bundled up.
When Dr. K. proposed a one week hiatus from the chemotherapy, we had hoped Faina's body would use the time to heal, be more ready for a next cycle, and that it would be a week of energy and appetite. It did not work out that way. If anything the trajectory of the past week has been in the opposite direction. Friday night was particularly difficult with Faina being in pain and experiencing nausea all through the night. While the recent CT scan showed no sign of anything untoward, her belly is swollen like we have not seen in months. I'm hoping that this is just a terribly rocky period and that Faina will be feeling better in a few days. At that point, she will begin a new cycle of chemo.
Faina perked up for a visit from a few friends and later for the arrival of our latest houseguest, a student from Rwanda. Heraclitus said, "The only constant is change." Amen.
When Dr. K. proposed a one week hiatus from the chemotherapy, we had hoped Faina's body would use the time to heal, be more ready for a next cycle, and that it would be a week of energy and appetite. It did not work out that way. If anything the trajectory of the past week has been in the opposite direction. Friday night was particularly difficult with Faina being in pain and experiencing nausea all through the night. While the recent CT scan showed no sign of anything untoward, her belly is swollen like we have not seen in months. I'm hoping that this is just a terribly rocky period and that Faina will be feeling better in a few days. At that point, she will begin a new cycle of chemo.
Faina perked up for a visit from a few friends and later for the arrival of our latest houseguest, a student from Rwanda. Heraclitus said, "The only constant is change." Amen.
Wednesday, January 5, 2011
Ups and Downs
We just enjoyed an incredible, long weekend with some of our nearest and dearest friends. The conversation was constant, lively, and therapeutic for Faina. A lot of story swapping, a lot of eating, a contribution to the bottom line at Stolichnaya, and an instant shrinking of the distances of time and space. When the last of the guests was dropped off at BWI, instead of a sigh of relief we wondered how the time passed so quickly.
Monday was mostly awful, Tuesday a little less bad, and we shall see what Wednesday brings. Dr. K thought the ascites was back, an indication that the chemo was not being effective. Among his comments, "There are other chemotherapy regimens we can try," "Gastric cancer is a vicious, aggressive cancer," "You've dealt with this disease with an uncommon dignity" and then the suggestion that we meet with our rabbi. It didn't take the interpretive skills of an English lit major to read this as "Put your affairs in order." Soldiering on, our next stop was American Radiology for the tri-monthly CT scan. Somehow their staff must have collectively taken their 100 mg Unhappy pills that morning as everyone we encountered there seemed to be snippier than the previous person. We didn't get the report, but we got a CD of the test and rushed it up to Dr. Esquivel's office at St. Agnes Hospital to see if Faina would qualify for a surgical procedure. We then headed directly home for the appointment with Marianne, the home health care nurse from Hopkins. On the way, a car made a dangerous maneuver, cutting in front of us then realizing that there wasn't much space in his new lane slammed on his breaks. No accident, but it was one more reminder of the fragility of life and the conversation turned to finalizing our wills. We anticipated a call from Dr. K. reporting on the CT results and telling us if we should come in the next day. It was a draining last day before a new cycle of chemo.
Today was a slight scramble out the door with a side trip to Atholton HS to drop off a well rested Jamie. Give the child credit, in 10 minutes she can be up, brushed, dressed, made-up, fed, and out the door. We get to the oncology center and nurse Allie says she does not have her orders from Dr. K. and that he will be out in 15 minutes to speak with us. She gives us a hint of what he has to say, so it isn't a quarter of an hour mired in deep dread. Dr. K. then appears and says, the bloating is not from ascites, but from an inflamed colon. I never thought an inflamed colon would be considered good news, but here we are. His suggestion, let's not do the chemo this week, give the inflammation a chance to calm down and pick up where we left off next week. We also got a call from Dr. Esquivel's office, the cancer has not shrunk sufficiently to go forward with the surgery. Try again in three months. Dr. K. does not think surgery is the way to go anyway, so should the option appear we will be in the position of arbitrating between doctors opinions. Margo prepared all the makings for burritos, cranked up the MacBook with some mood music, and, when Jamie got back from her rehearsal, we all enjoyed a meal that would have put her in strong position in an Iron Chef competition.
Monday was mostly awful, Tuesday a little less bad, and we shall see what Wednesday brings. Dr. K thought the ascites was back, an indication that the chemo was not being effective. Among his comments, "There are other chemotherapy regimens we can try," "Gastric cancer is a vicious, aggressive cancer," "You've dealt with this disease with an uncommon dignity" and then the suggestion that we meet with our rabbi. It didn't take the interpretive skills of an English lit major to read this as "Put your affairs in order." Soldiering on, our next stop was American Radiology for the tri-monthly CT scan. Somehow their staff must have collectively taken their 100 mg Unhappy pills that morning as everyone we encountered there seemed to be snippier than the previous person. We didn't get the report, but we got a CD of the test and rushed it up to Dr. Esquivel's office at St. Agnes Hospital to see if Faina would qualify for a surgical procedure. We then headed directly home for the appointment with Marianne, the home health care nurse from Hopkins. On the way, a car made a dangerous maneuver, cutting in front of us then realizing that there wasn't much space in his new lane slammed on his breaks. No accident, but it was one more reminder of the fragility of life and the conversation turned to finalizing our wills. We anticipated a call from Dr. K. reporting on the CT results and telling us if we should come in the next day. It was a draining last day before a new cycle of chemo.
Today was a slight scramble out the door with a side trip to Atholton HS to drop off a well rested Jamie. Give the child credit, in 10 minutes she can be up, brushed, dressed, made-up, fed, and out the door. We get to the oncology center and nurse Allie says she does not have her orders from Dr. K. and that he will be out in 15 minutes to speak with us. She gives us a hint of what he has to say, so it isn't a quarter of an hour mired in deep dread. Dr. K. then appears and says, the bloating is not from ascites, but from an inflamed colon. I never thought an inflamed colon would be considered good news, but here we are. His suggestion, let's not do the chemo this week, give the inflammation a chance to calm down and pick up where we left off next week. We also got a call from Dr. Esquivel's office, the cancer has not shrunk sufficiently to go forward with the surgery. Try again in three months. Dr. K. does not think surgery is the way to go anyway, so should the option appear we will be in the position of arbitrating between doctors opinions. Margo prepared all the makings for burritos, cranked up the MacBook with some mood music, and, when Jamie got back from her rehearsal, we all enjoyed a meal that would have put her in strong position in an Iron Chef competition.
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