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)

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)

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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 )
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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
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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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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.
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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.
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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. ( 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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We’ve waited to post on this topic until now because we weren’t sure we’d be going through with it. SIR (Selective Internal Radiation) is a technique for killing tumor cells by infusion of radioactive beads throughout the liver. A specialist in Raleigh has looked at Rebecca’s case and we all believe she can benefit substantially from the treatment. This is being written in the recovery room after an angiogram that showed Rebecca’s arteries are in good enough shape for us to proceed with SIR treatment.
So now we are “looking forward” to Jan 7. We expect some very uncomfortable days, perhaps weeks, immediately following the treatment. The hope is that she will then feel significantly better for the spring and summer — and maybe much longer. In the meantime, we are dealing as best we can with pain (from the tumors), nausea (from the pain meds), and a rash (from the chemo drug). We had a new experience with chemo yesterday — a reaction that gave Rebecca severe chills and a fever that had to be controlled with benadryl, solumedrol, and demerol. But enough of these details. In the words of Sidney Poitier (Mr. Thackeray) “There are certain things a decent woman keeps private.”
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The news is not surprising, which is not good. The tumor marker levels have doubled since three weeks ago. So we start chemo tomorrow. The drug we’ll try this time is Vectibix (http://www.vectibix.com/), which is similar in its action to Erbitux. We start tomorrow (Friday) afternoon. This first treatment will just be Vectibix and the main side effect will likely be a fairly severe rash. Future treatments will add Irinotecan because there is some evidence that Vectibix resensitizes tumors to Irinotecan. We’ve had experience with Irinotecan, though, and we are not looking forward to the nausea that comes with it.
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Rebecca’s daily health report has been mixed for the past three weeks. She doesn’t have the horrible nausea and terrible headaches, but she does have worsening neuropathy — numbness in her fingers and feet — along with abdominal pain, particularly when she takes deep breaths. She also has some mild nausea and often feels tired, so she can’t be up and about for more than four or five hours at a time. We got a prescription today for stronger and longer acting pain meds (oxycontin) which could make a big difference.
Today was supposed to bring another infusion of Avastin as well, but things don’t always (or maybe never) go according to plan. At the end of a long wait and then a long talk with the oncologist about Rebecca’s options for the coming weeks and months, we got blood counts back and learned that the liver enzymes were elevated. It is conceivable that this is due to the Tarceva, but we have to find out whether it is actually indicating that the tumors are progressing. If the latter, we’ll have to start our third line of strong chemotherapy quickly. We’ll get more info tomorrow in the form of tumor marker levels from that same blood draw, so we’ll post another blog entry tomorrow or Thursday.
On the brighter side, we had a wonderful Thanksgiving break. Jacob was home; we had a lovely Thanksgiving dinner/evening with Jon, Barb, Anelle, and Audrey (Barb’s mom); and we had a nice two-day visit from Yvette. Having Jacob and Anelle in town was particularly nice for Yvonne.
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