11/23/16

Marker

Sherri slipped away from us at 11:23 pm on 11/23/2015, when the “hour met the day and the day met eternity.” This quote from Sherri’s memorial service reminds me of that turning point as we approach the one year mark. It has been a year of adjustment, of course. Who would expect otherwise? But we are okay.img_1037

Last January, I wrote about an extraordinary sign that came to us when our cut Christmas tree started sprouting new growth. I took this as a fairly straight-forward reminder that life goes on, expressed through Sherri’s love of botany. But even while that was happening, our family was also quick to recognize that our lives would never be the same.

When we lose someone who is a part of our daily existence, we are forced to take a longer view. Against the backdrop of eternity, life on earth is pretty short. Yet it is the time we have to define who we are. We are grateful that Sherri has given us many reminders of who she is, and that many people celebrate those gifts with us.

Love seems to be the defining force in the universe, because it can not itself be defined. It is universally recognized, though we can only experiment with its effects. Guided by love, the human form evolved to receive love, and to give it with unlimited capacity. Life itself is not ours, so we define “our life” by what we love and shape it with our conscious action and determined purpose. Yet we mourn the loss of the material form of someone. Without that form, their life, consciousness, and self-awareness are harder to see, but they are still there if we look for the signs.

We appreciate having you all in our lives. Happy Thanksgiving everyone.

01/28/16

Birth of a Botanist

An old friend sent me a package recently, which contained a book titled “A Guide for the Perplexed” by E.F. Schumacher. At first I was perplexed about what he might be trying to tell me with this gift, but eventually got the connection. The book contains a very interesting discussion on four levels of being: matter, life, consciousness, and self-awareness. It asserts that science operates at the first level because it is the only level directly accessible to objective, scientific observations by means of our five senses. Physics and chemistry describe matter, and even the “life sciences” deal with the carriers of life rather than life as such. Life itself, along with consciousness and self-awareness, can be noticed and studied, but explaining them requires a leap of faith. Plants have life, animals add consciousness, and people add self-awareness (we are conscious of our own consciousness). So we share with plants the characteristic of life, but even with our powers of self-awareness we can’t really prove exactly how that happens, or where it starts or ends.

Today marks Sherri’s 60th birthday. She hoped to get past the holidays and make this milestone with us. But on December 5th, the day of her memorial service, we picked out a Christmas tree without her. Or so we thought. This tree has been holding up unusually well and hasn’t started dropping needles, so we decided to leave it up in the house a bit longer. Over the last couple of weeks it started sprouting new growth, though it has no roots or soil. It is still growing. Maybe our botanist found a way to live among us until her birthday after all.

Sherri would say that the soul of a plant has to do with it’s use. From whence cometh it’s life?

Happy Birthday to our beloved botanist.

Happy Birthday to our beloved botanist, born January 28, 1956.

12/22/15

The Storm Before the Calm

thunder.stormbefore.com

The thunderstorm before the calm. I suppose life is like that. We face challenges, and for the most part we learn and are stronger after they roll through. Many of our most meaningful accomplishments come as a result of a fight, or at least after some work. But it sure is hard to see while the storm is raging.

Our first breath is a struggle. Sometimes we suffer, only to take our last. But in the long run it’s not really the challenges that matter, nor the accomplishments. It’s our response that defines us; the choices we make during the storm. The destruction from the thunderstorm is ultimately balanced by the nurturing rain, and the calm that follows can be a place of new perspective and renewal.

This Christmas, we reflect on the life of a beautiful soul. Sherri’s thunderstorm has passed; ours continues for a little longer. But the Christmas story reminds me to be patient for the calm. When love is born it produces a light we may choose to follow; and peace comes from a deliberate journey toward it.

Let’s see what the New Year brings.

Blessings,
Dave, Zia and Anji Cooper

Special ornaments.

Special ornaments.

12/3/15

Honoring a Life

On Saturday Dec 5, 2015 at 3;30 pm we will hold a memorial service for Sherri at Bryn Athyn Cathedral (900 Cathedral Rd., Bryn Athyn PA 19009). The service will be livestreamed. During preparations, it has been shaping up more like a celebration of life than a farewell event. There are so many people involved, I can’t possible know or acknowledge you all. Here are a few examples, though. Special music will start at 3 pm, featuring cellist Tom Rosenberg, a friend of Sherri’s since second grade. Additional music selections during the service will be performed by Sherri’s friends and former students. The service will be conducted by Rev. Dr. Jonathan Rose, who has spent many hours with Sherri and me over past 2 years, talking over important stuff about life. Yup, a valued friend.

There will be a reception immediately following the service, at Bryn Athyn College’s Doering Center for Science and Research. The College is hosting this event in Sherri’s honor, and Dr. Allen Bedford, Dean of Academics, will facilitate people who may want to say a few words. Several adminstration and faculty members intend to reflect on Sherri’s impact at the College. Friends of ours. The College has also established a memorial trust that will encourage faculty and student research. Information on how to contribute to the Sherri Rumer Cooper Research Fund can be found on the Support Page. Might as well call it the friends of Sherri Cooper fund.

All of these meaningful tributes to Sherri’s life are but the tip of the iceberg. There are event organizers, volunteers, walking buddies, meal providers, pay-it-forward cleaning and yard crews, afternoon visitors, advisors, sponsors, pen pals. People have covered for us, and anticipated what we might need. And you don’t seem to expect anything in return.

Thanks friends. We are honored to know you.

11/24/15

Imagine

Sherri slipped away from us at 11:23 pm on 11/23. The timing must be symbolic; maybe it says there is meaning in the smallest details of our lives, and right to the transition point. Sherri’s life carried meaning to many people, and I am continually amazed at her impact. We will miss her tremendously.

Remarkably, she approached her final moment with a smile on her face and a sparkle in her eyes. She seemed to be gazing out into a realm that we can only imagine.

So I imagine a mother in the beauty of her prime, waiting for her children with patience, unlimited by time. I imagine a daughter reunited with her mother and looking at her face as if in a mirror. I imagine a sister who always keeps in touch, finding a way to call. I imagine a scientist discovering but looking further still. I imagine a teacher offering truth to inspire. I imagine a friend listening with calming eyes. I imagine a beautiful soul living, unlimited by time.

We are planning a memorial service and celebration of Sherri’s life at the Bryn Athyn Cathedral on Saturday, December 5, 2015 at 3:00 pm. There will be a reception following the service, right across the street at the Bryn Athyn College Grant R. Doering Center for Science and Research, the science facility that Sherri worked to establish and believed was vitally important to the success of the College. All are welcome.

Sherri with Anji and Zia, 2003

Sherri with Anji and Zia, 2003

11/19/15

Gravity

coyote-06I’ve been thinking about gravity. Not just the gravity of the situation, but the force of gravity.

One might consider gravity to be a “fair” law, because it acts equally and predictably. You might be able to overcome gravity with ingenuity or animation, but you can’t truly defy it. Each time Wile E. Coyote experiences another epic fail, gravity certainly has a hand in the result, but he can’t blame gravity for the injury.

Mr. Coyote seems to be able to survive any calamity so he probably wouldn’t spend much time contemplating transcendental matters, but we humans have an ongoing debate across time and culture. Why are we here, how did we materialize in such a functional order, and what happens next? We could say that God put us here, God made us in his image, and we go back to God. But as a species, we can’t seem to agree on what or who we mean by God. In his theological writings, Swedenborg offers this interesting perspective: The Lord appears in the spiritual world as a sun, emanating love as warmth and wisdom as light, which actively creates and sustains life. This is easy to visualize; after all, our natural Sun provides warmth and light, and actively sustains life.

So where does gravity fit in? For one thing, the gravity of our Sun keeps us in an orderly rotation, so we don’t fly off into outer space. Maybe spiritual gravity is the law that keeps our lives in an orderly rotation around love, wisdom, and action. As we speed through life, our love, careful consideration, and positive actions keep us from becoming space cadets.

It’s hard to explain what love is, but we know is what it does, how it makes us feel, its effect. We fall in love with people, get all passionate about things we love to do, and expound on the merits and pitfalls of love in every movie, song, and piece of artwork ever created. Love draws everything to it like the gravity of the Sun. Love is clearly an “attractive” force. People are formed in the image of love. It is, quite literally, our reason for being and it is what makes us human in both form and function.

Yet, love does not predestine the path our lives will take. Love, like gravity, regulates our orbit, keeping us in a place of equilibrium where we can make good choices. We endure diseases, afflictions, injustices, and misfortunes, but they are not designed for us. They are never deserved. We fall, but we can’t blame gravity, love, or God for the injury.

Sherri left a position at Duke in 1999 to teach biology at Bryn Athyn College because this institution encourages the inclusion of moral and spiritual values in the classroom. She is tuned in to a higher channel, and I believe this has benefited her students over the years, and sustained her while she has battled first breast cancer starting in 2009 and then pancreatic cancer since 2013. Her love of scientific inquiry, her belief in the eternal spirit in each of us, and her perception of how these fit together have enabled her to find courage, to support her family and her friendships, to teach and inspire.

Last week we decided to enter a hospice program. This is the next phase in Sherri’s journey and ours, and it changes the focus from the tumors and the science to peace for the spirit within her. The battle has taken a toll, and her natural body can no longer tolerate medical attempts to cure, though the efforts have been well-founded and promising. She hopes the clinical trials have helped advance us toward a solution. We hope to keep her comfortable, able to participate in life, and at home.

As we fall, we don’t blame gravity, but we know it will still hurt when we hit the ground.

10/30/15

House of Cards

There are many foundations on which we build our lives; assumptions that guide our actions. Once in a while, we are reminded that change is the most reliable assumption of all. Unfortunately, while maybe reliable, change is not very predictable.

A few years ago, Sherri’s health was one change we didn’t think would hit us this drastically, or this soon. We’ve had some runway to deal with Sherri’s cancer, and she’s acted bravely, pragmatically, and with focus on what really matters. It’s a precarious balance between being hopeful while shooting for positive outcomes on the one hand, and preparing for the inevitable on the other hand. Of course, it’s just a matter of time for all of us. We’ve been focused on positive action and trying to make the best of Sherri’s time, carefully building our house of cards. We do not regret that. But when the first card pops out of place the rest of the house starts to waver.

Sherri has been on a biological treatment called Herceptin for the past few months. This is an approved breast cancer drug that addresses a gene mutation that was found in her pancreas tumor. Her oncology team speculated that some of the same mechanisms may be at work in both types of cancer. For a while, it seemed like this treatment was keeping things stable (which is a noble goal for anyone in this predicament). Recently though, Sherri has been a little worse for the wear.

Medically speaking, Sherri’s pancreas is not her main worry. The panceatic tumors had already spread to other organs (which is what defines a cancer as Stage 4) when it was first detected in August 2013. The biggest problem is her liver, which has tumors encroaching from one direction and has been damaged by the chemotherapy from the other direction. Slow the chemo, and the tumors accelerate. Speed up the chemo, and the liver damage accelerates. That’s why the immunotherapy trials have been important; we needed something to slow the tumors without toxic chemicals. Dodging back and forth between chemo and immunotherapy trials has been a balancing act, but slowly we’ve been noting the progression of pseudocirrhosis. In this scenario, eventually you lose your body’s filter and other toxins start to make it into your bloodstream. There are signs that we have hit the point of convergence where there is very little left to balance. For example, a recent check of her ammonia levels showed 4 times higher than normal. That would make you really, really tired.

We are having ongoing discussions with our primary oncology team at Fox Chase Cancer Center to consider whether there are any treatments that might still work, how well they are likely to actually work, and what the cost in time and comfort might add up to. There is no obvious course of action. Either way, we’ve decided to start looking at how this fight might come gracefully to a close, whatever the timeframe might be. That first card is bending…

08/9/15

Of All The Gall

Well folks, things haven’t exactly gone as planned lately. The little bout we had in the hospital back in June when that whole stroke thing happened turned out to be a precursor to a recurring problem. Namely, the fever kept returning about a week following each time that Sherri finished a course of antibiotics. The latest episode landed us back in the hospital at Fox Chase for 6 days to try to sort it out. The short version of the story is that it appears she has been playing against a gall bladder infection that thinks it has a shot at the Final Four, so it won’t go away.  In the meantime, we missed the start of the scheduled NIH PDL-1 clinical trial while tending to this problem, and now the docs have determined Sherri is no longer a good candidate. So we are moving on to “Plan H.” Our oncology team warned us we needed a Plan A, B, and C, but fortunately we are not out of options quite yet even though we’ve had to move substantially further down the alphabet. It seems that the pancreas is a very active area for cancer research these days, so we can’t complain about that.

Want the longer story? Read on if you dare (because we already know you care…)

GALL DARN IT

Apparently gall bladders are known to start having problems when one’s liver is in jeopardy. There are a load of ominous sounding diseases of the gall bladder, and Sherri undoubtedly has one of them but so far we don’t know exactly which one. Normally, the prudent course of action would be to ditch that particular organ – it’s not that important. However, Sherri is not a good candidate for abdominal surgery just now so other alternatives are vastly preferable. The most conservative option is to treat it with a longer course of several different antibiotics to try to sterilize the infection and keep the fevers at bay. This is the first time since diagnosis that a new organ has gotten involved in the symphony, so we are wary that this could be a sign that things are progressing differently. We’re working it.

TRIBULATIONS

The NIH trial is an immunotherapy, and the trial team has taken the position that messing with the immune system when there has been a recurring infection could be dangerous. My take is not quite so conservative, but I’m not in charge. Last week they told us they would reschedule Sherri for this trial when her blood parameters came back in line (which they have) and when the infection was handled. Recently, I asked them how long we would need to go off antibiotics without a recurrence of the fever before they would consider it gone. They called back the next day and said never mind, we think it’s too risky.

<RANT> NIH moves at a different pace than the research centers they fund in industry. They have been unable to schedule this trial since we visited them on June 10, when we were originally accepted. I have to wonder if their concern is that they might not get the outcome they want for getting their treatment approved, as opposed to this being about patient safety. NIH allows their doctors to invest in the drugs they administer in their trials, and because they disclose this they say it is not a conflict of interest. If your patient is a scientist, maybe they could be involved in the safety judgment, just sayin’. </RANT>

PLAN H

Meanwhile, back at the ranch… We have been working to get a treatment for Sherri that has been approved for breast cancer, but not specifically for pancreatic. Insurance has agreed to it, so that makes life a little easier.

The treatment is Herceptin, which attacks the cancer cells that make too much of a protein called HER-2. It has been relatively successful in treating breast cancer. Herceptin works by attaching itself to the HER-2 receptors on the surface of cancer cells and blocking them from receiving growth signals. By blocking the signals, Herceptin can slow or stop the growth of the cancer. Herceptin is an immune targeted therapy, but so far we don’t think having the recurring fevers will prohibit Sherri from starting the treatment. Her pancreas tumor was tested for a variety of gene mutations, and was found to have the HER-2 mutation, and there is a chance this will work in the pancreas similarly to it’s relatively high success in treatment of breast cancer. It’s still working the percentages, but let’s see what happens.

LIFE’S A BEACH

In addition to messing up the NIH trial, Sherri’s latest hospital stay threatened a few of our family plans. But we have to draw the line somewhere, don’t we? Sherri recruited one of the nurses at Fox Chase to help her escape in time to make our planned trip to North Carolina for a reunion with her mom’s family at her beloved Core Point on the Pamlico River. So we got out of the hospital on Thursday July 23 and drove 10 hours to NC on Friday… It was therapeutic and the trip back was a little more sane thanks to our friends Buck and Deb in Virginia Beach. Many others in our friends and family network have offered to accommodate, fly us around (thanks JC), or hide us from doctors and nurses wielding syringes. Thank you, as always.

Last Wed, Sherri ended her latest course of antibiotics, and predictably with disappointing undertones, her fever came right back. We persuaded her docs to extend the antibiotics and yet again we escaped, this time to a beach house in Ocean City NJ, her dad’s birthplace. So we are still working hard to deny fate, with some degree of success so far.

In the process, we are reflecting on the amazing gift of life. Won’t you join us?

Of course you will… Thanks for your continued support, your gifts of meals and walks in the park and good vibes and check-ins and visits and prayers and random acts of kindness.

The Coops

06/28/15

Stroke of Luck

In the last episode, our heroine had been cornered by Peter Pancreas, a smallish villain who flits about undetected, then emerges from the fairy dust and strikes with random impunity. Shootin’ Sherri had deployed a Gem-Abrax nerve agent, but it was not effective on the elusive abusive. Faced with diminishing returns, she activated her trusty FOLFIRINOX belt as an interference tactic to confuse her foe while considering her next move. Momentarily disoriented by the fumes, she was still able to slip past the threat to continue the fight for peace and justice.

Meanwhile, Sherri’s trusted network of friends were back at the lab devising the next counterattack. Feigning sleep, SS fell into a trance and channeled the immunotherapy research machine. Scanning the vast universe of clinical trials, the network pinpointed several options that could advance her cause. Zeroing in on a promising technology she implemented a difficult mind-meld with the an-NIH-illator.

On Tuesday June 16, Sherri completed her 3rd FOLFIRINOX treatment since dropping the Gemcitabine-Abraxane cocktail that had failed to make any noticeable improvement. FOLFIRINOX is the same treatment that she started upon her initial diagnosis back in 2013. It worked then (although it became more toxic as time progressed), and it appears to be having some positive effect this time as well. Her CA19-9 marker, which had elevated up into the 900s, was back down in the 600s after two treatments. At the same time, we’ve been working on getting Sherri  accepted into a new immunotherapy trial at the National Institutes of Health (NIH) National Cancer Center (NCC) in Bethesda MD.

Different Strokes

Sherri provided me with some good drama for the blog this week. Anji and I were camping at Assateague Island in Maryland, and Sherri’s sister Sue was in Bryn Athyn to help out and accompany her to Fox Chase for a scheduled abdominal CT scan. During the few days prior to her appointment, she started to develop a fever, became confused, and had some trouble speaking clearly. On Thursday they went for the CT and met with Sherri’s primary oncologist. He indicated that the scan had shown improvement (!), shrinking the liver tumors substantially. He also admitted her to the hospital to check into the fever and confusion. We headed for home that afternoon.

Then things got interesting. By Friday morning, Sherri was incoherent in her speech and very shaky and unstable on her feet. The staff sent her for a head CT scan, and found a troubling shadow that they felt warranted evaluation from a neurology team. Their initial diagnosis was a stroke, but don’t worry this turns out okay! During an initial exam, the neuro team asked Sherri a series of questions and to identify left and right sides when they touched her arms and legs. She failed most of these tests, something like this: How old are you? (24)  What year is it? (25) What is 3 x 3? (I don’t know). Show me your left pinky finger (holds up a peace sign with her right hand). It’s amusing in retrospect… But based on these indications, they confirmed the stroke theory and scheduled an MRI to get a better picture of what might be happening inside her head.

The MRI showed the same shadow, but clearly indicated that it was not the site of an acute stroke, and they could not find any other indications. In the meantime, she continued to move toward lucidity and by the afternoon she was correctly answering more complicated questions from her doctor: What genus am I? (homo)  How many carbon atoms are in a glucose molecule? (6). I would have gotten these wrong, and been sent to rehab. It wouldn’t have helped me. The doc told her that she had scared the hell out of him, and he wasn’t alone. One new theory is that this was a reaction to the chemotherapy, so we’ll seek some additional opinions on that. She continues to show improvement day by day.

NIH Trial

The new clinical trial is another immunotherapy that targets a PD-1 pathway in the immune system. There are quite a few of trials approaching this same pathway with different treatment variations. This one involves Medi4736 with stereotactic body radiation therapy (SBRT of pancreatic tumor). Medi4736 is an experimental drug developed by MedImmune, Inc. to target the protein PDL-1. The way I understand it, PD-1 is like a switch that can turn off your immune response for self-regulation, and PDL-1 flips the switch. The trial that we recently requested at Penn (where Sherri was not eligible) blocks PD-1, so the immune system can’t be switched off and therefore stays active. The NIH trial is to block the PDL-1 so it doesn’t turn off the PD-1 switch, which has a similar effect on the same pathway but using a slightly different mechanism. The radiation component is to damage the pancreas tumor to attract the immune system so it’s working where it’s needed.

This approach has been recommended by some of the best science minds we know – Sherri has reached out to contacts at leading university research centers (Penn, Hopkins, Duke) and bio-tech industry labs (Regeneron). They have communicated together about her case, and she has gotten a universal thumbs up that this line of treatment shows promise. It is not without risk. Still, she’s anxious to get started on or about July 15th, especially now that the severe neurological reaction is likely to be attributed to the chemo and does not put her at further risk in the trial.

It feels like we dodged a bullet this week. I guess it just highlights how fast things can change. Despite preparing for many scenarios we can think of, we still were caught off guard by this one. Nice to have another reprieve for the time being.

As always, thank you to our family, friends, and community for holding Sherri in your thoughts and prayers.

 

Sherri and the girls at Anji's graduation.

Sherri and the girls at Anji’s graduation from 8th grade, June 2015.

 

04/29/15

Progression

Dear Friends,

The time has passed quickly and I find it’s already been a couple of months since we’ve given you an update. It’s been a tough road, as we expect when being systematically poisoned. But sometimes chemotherapy is the best we’ve got. Sherri has been back to the balancing act between the pain of side-effects management, and the side-effects of pain management. In other words, its a vicious cycle…

I promised to update you on a few things the last time: the results of the previous CAR-T trial at UPenn, where we are in the scarf chronicles, and the status of upcoming immunotherapy clinical trials that we are monitoring. When we left this story, our heroine had recently finished a clinical trial that created a clone army of genetically modified t-cells. This trial worked for a time, keeping the tumors stable with far fewer side-effects and relatively good quality of life. As it came to an end, the team at the University of Pennsylvania was beginning their analysis. As it turns out, Sherri was the only patient in the trial that had a positive outcome – all the other participants saw continued progression of their disease. So they are now back to the lab with another variation of the technique to see if they get better results overall. We are on the waiting list for this new one as well, but it’s apparently a ways off.

Since there were no other trials on the near horizon, we figured the law firm of Gemcitabine & Abraxane might be available… Ok, that’s a lie; they are not a law firm. Gem-Abraxane is the new chemo kool-aid that Sherri’s oncology team recommended. Well, not really kool-aid; maybe we’ll call it one-two punch. Any hoo, the point is that it sucks when they put this stuff in your bloodstream. Right on cue, she converted a full head of hair to a patchy fuzzy peach. Along with other side effects, she has more pain and fatigue to deal with. So it’s just been hard to get stuff done. Today, we also got the results of a CT scan taken yesterday. The bottom line is that this treatment is not working. There is growth, primarily in her liver tumors but marginally in her lungs as well. It is not alarmingly aggressive (the radiologist called it “moderate progression”), but we are looking for shrinkage so this is clearly going in the wrong direction. Docs recommend stopping this treatment and moving on to the next option.

We already knew this chemo was only a temporary solution, so in the meantime, we had thrown a wig into the ring for a new clinical trial in immunotherapy. This UPenn trial is targeting the protein PD-1 that regulates the immune system by preventing the activation of T-cells. Inhibiting PD-1 lets the T-cells go to work doing what they do best. This technology has shown positive results in other types of cancer, and in fact there are some parallel trials using the same techniques for pancreatic cancer at other institutions. So far, Sherri has been deemed ineligible for the UPenn trial due to her previous problem with inflammation of the pituitary gland (this occurred during our first immunotherapy trial at Johns Hopkins). We are still working the system to see if we can be admitted to this or a similar trial, and also looking at alternatives.

Three additional alternatives in front of us for consideration are:

  • A trial at Fox Chase Cancer Center that uses an antibody that binds to pancreatic cancer to carry a radioactive isotope called 90-yttrium that targets the cancer cells. One problem with this trial is that it’s a double-blind test and one-third of the patients get a placebo.
  • A relatively new treatment being used successfully in breast cancer that targets a particular gene mutation that showed up in Sherri’s genetic profile when we ran those tests back in 2013. The docs are checking into it to see if it makes sense to try it. There appears to be little down-side, but it’s unproven for pancreatic treatment.
  • A return to the FOLFIRINOX chemotherapy, which had very good results in the initial round (with some escalating side-effects, of course)

It’s been a tough couple of months in our community and other families close to ours have been thrown into turmoil. Together, we find the courage to continue. Thank you yet again to everyone who has summoned the time and energy to reach out in so many ways.