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The Memorial Service

Many thanks to all who were present in person and in spirit.

Text of the service;     Pictures of Rebecca (1958-2009)

Order of service (background image: live oak in front of Tallahassee home)

Memorial Service Details

A memorial service for Rebecca will be held at the Community Church of Chapel Hill Unitarian Universalist at 2:00pm on Saturday, January 31.  After the service, there will be a reception in the Jones Building Activity Room.

CCCHUU is located at 106 Purefoy Road, Chapel Hill, NC.
( Google map,   Mapquest )

Gifts to Honor Rebecca

Rebecca believed strongly in many worthy causes. She would have been delighted to have donations made in her name to humanitarian relief agencies, environmental conservation advocacy groups, women’s rights groups, and civil rights groups. Perhaps the best way to help sustain her special contribution to improving many lives is to support the Child Medical Evaluation Program that she directed. Information about the program can be found at http://www.med.unc.edu/cmep/ .

Checks should be made payable to “CMEP Trust Fund” and sent to the following address:
CMEP Trust Fund
c/o Molly Berkoff
101 East Weaver St, Suite 203
Carrboro, NC 27510

Rebecca died at 11:00 last night. She peacefully stopped breathing while Yvonne was reading to her.

Rebecca had a massive GI bleed on Sunday night due to colon cancer with liver metastases, compounded by ITP (untreatable low platelet count in her blood). Her last two days were spent in the hospital. She was unable to speak clearly due to liver failure and pain medication, but we hope she heard our words of love and encouragement.  During the day the room was full of friends and family.  More later about memorial plans.

“I carry your heart.  I carry it in my heart.”

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Update

We’ve just come from our church, which held its service in commemoration of Martin Luther King, Jr, including a sermon by Tim Tyson (“Blood Done Sign My Name” — read it if you haven’t yet) with powerful music from Mary Williams. It was great to see that kind of spirit as we deal with our difficult news.

A CT scan late Thursday revealed that the cancer in Rebecca’s liver has progressed significantly. It appears extremely unlikely that further treatment will be possible or effective, and we are now preparing to begin hospice care, which means that we will be working to keep her as comfortable as possible rather than attempting to beat back the cancer. The doctors seem to think that she has anywhere from a few weeks to a few months left with us. We are hoping that whatever time we have can be peaceful, not requiring hospitalization.

The symptoms directly attributable to the tumors now are flank pain, which we control with dilaudid, and declining liver function. If that were all, it would be likely that Rebecca would simply get more and more tired as the liver function worsens. There are some other symptoms as well, though. She is generally short of breath due to accumulation of fluid in her lungs. She also has significant swelling of her feet and abdomen. Finally, she still has a low platelet count of unknown origin, which prevents us from draining the fluid in her lungs and from keeping her on the anticoagulant she has been taking to prevent DVTs. We are hoping that the large dose of steroids she just completed will bring the platelets back up.

We don’t know what the next weeks and months will be like. If bleeding or clotting becomes an issue, we may have some trips to the ER in store. Our hope is that Rebecca can stay home and be up and about for a few hours a couple of times each day. We’ll try to rent a wheelchair that can travel over the paths of the Duke forest around our home.

We’ve talked over the various scenarios as a family and the kids are responding with strength and grace. Yvonne will continue her senior year and start at Swarthmore in September. Jacob will return to Swarthmore in a week and we’ll fly him home for some weekends. Josh will continue to teach and supervise student research projects, but will cut back on other work activities that cannot be done from home.

It is very hard to let go, but harder still to contemplate the misery that would surely come with continued aggressive treatment. We are so grateful for the words and deeds of encouragement we’ve gotten from family, coworkers, neighbors, and old friends.

No SIR

We had a rough day. Rebecca was all set to head to the SIR treatment room when the news came that her platelets were too low for the procedure to be done safely. We’ll be spending the next few days doing various tests to try to understand the source of the platelet problem and state of the liver.

Rebecca battled through a few weeks of rather severe nausea and pain in December. We finally figured out that the oxycodone was causing the nausea. We switched to dilaudid and the nausea has largely gone away, which makes a big difference. The pain is intermittently bad, but basically under control. She has shortness of breath, some swelling in her legs, and a somewhat distended belly, all of which are a bit uncomfortable but not debilitating. She can be reasonably comfortable lying on her back most of the time and getting up for meals and a bit of walking. In our travels to two hospitals today we needed to use wheelchairs to keep the flank pain from flaring up. The pain meds sometimes make her a bit loopy — she’s been having strange dreams.

The situation is getting quite complicated, requiring balancing risks of bleeding with risks of clotting, risks of tumor progression with risks of inducing liver failure, and pain management with mental clarity. We’re glad we have each other and the support of so many friends.

Update

Happy New Year to all our devoted readers.

We had a lovely trip to Florida between Christmas and New Year’s day. The weather was perfect in Venice (just south of Tampa) and we saw 5 sunsets from the beach. We also got to spend an afternoon with Rebecca’s dad. Rebecca has been struggling mightily with nausea and flank pain, but our B&B accommodations were just right — a couple of blocks from restaurants in downtown Venice and only a minute from the beach by car. ( http://www.horseandchaiseinn.com ) Even the travel was OK; just a short nonstop flight from RDU to Tampa on Southwest.

Since coming home, things have gotten complicated. Rebecca is still scheduled for SIR treatment on Wednesday, but a recent blood test showed that her platelets are quite low. We’ll go early tomorrow for an ultrasound to help determine the cause, then, assuming that the SIR treatment is not ruled out, we’ll spend the afternoon at Duke getting a platelet transfusion to prepare for Wednesday.

On top of all this, it turns out that Jacob needs to be treated for leishmoniasis — 7 days of antimony infusions. We’ll get them started Wednesday as well. We’re not expecting any bad side effects, but he does have to be at the clinic for 2 or 3 hours every day.

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