Friday, March 11, 2011

Nihum Avelim

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

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.

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.

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.


Thoracentesis
 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.

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.

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.

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.