Here, in order, (with a few lost to computer crashes) are all the messages
we've sent out on Ceal's recovery:
(Hit control + click to follow the links)
Ceal's Surgery I,
05/23/02
Ceal's Surgery II,
06/02/02
Ceal's Recovery I
06/03/02
Ceal's Recovery II
06/04/02
Ceal's Recovery III
06/07/02
Home from the Hospital 06/09/02
Heal Ceal! 1
06/24/02
Heal Ceal! 2
07/14/02
Heal Ceal! 3
07/29/02
Letter to India
08/02/02
Ceal's Condition
08/17/02
Heal Ceal! 4
08/18/02
Healthy News
09/10/02
Heal Ceal! 5
09/26/02
Heal Ceal! 6
10/27/02
Heal Ceal! 7
11/29/02
Heal Ceal! 8
12/21/02
Heal Ceal! 9
02/16/03
Heal Ceal! 10
04/04/03
Heal Ceal! 11
04/04/03
Heal Ceal! 12
09/19/03
Heal Ceal! "Yet Again"
Early 2004
Heal Ceal! 13
March/ 04
Heal Ceal! 14
06/04/04
Missing some here from a crash.
If you have anything from these dates, please send it.
Heal Ceal! 15
03/14/05
Heal Ceal! 16
08/17/05
Heal Ceal! 17
09/11/05
Heal Ceal! 18
12/05/05
Heal Ceal! 19
06/04/06
Heal Ceal! 20
10/11/06
Heal Ceal! 21
06/04/07
Heal Ceal! 22
06/04/08
Heal Ceal! 23
10/30/08
Heal Ceal! 23a
11/20/08
Heal Ceal! 24
04/19/09
Heal Ceal! Web 1
05/11/09
Heal Ceal! 25
06/05/09
Heal Ceal! Web 2
06/08/09
CaringBridge 1
06/18/09
CaringBridge 2
CaringBridge 3
CaringBridge 4
Heal Ceal! 26
CaringBridge 5
CaringBridge 6
07/11/09
07/15/09
07/17/09
07/18/09
07/18/09
07/18/09
Ceal's Surgery I
Malvern, 05/23/02
Dear various families,
Some minor bleeding that Ceal experienced on rare occasions over the last few
years got substantially worse a little while ago. She saw our doctor who sent her
to a Gastroenterologist who set her up for a colonoscopy this morning. (Side bar:
she was supposed to open in the lead in a huge world premier play at our theatre
tomorrow and the preview last night had to be cancelled so that she could do her
purging prep.) The scoping found a small polyp which was removed then
encountered one further along that was too large to get the scope past. They
went into quick time and sent her to a lab for blood work and radiology for a
barium enema x-ray and thence to a surgeon who will remove the afflicted
section of the colon on June 4. No biopsy was done as they just knew they
wanted the tumor out whatever it may be. We'll find out after surgery what
further implications there may be.
I'm writing from the theatre because our Windows has crashed and I can't get
online at home. Ceal finally got some rest and food this afternoon and is here
with me getting ready to do the show tonight. She will play until she has to leave
the show on the 4th.
We thought you should know this sooner than later. We'll keep you posted on
developments. Send love and hold Ceal in the light.
love, Peter
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Ceal's Surgery II
Malvern, 06/02/02
Friends and familyThanks for your notes. We've had many highs and lows in the last week
entertaining the range of possible outcomes to Tuesday's surgery: from no
discernable malignancy through to widespread metastasis. It seems that those
two extremes are unlikely (though not impossible). Ceal's admission sheet says
she's in for surgery "for colon cancer." Because she was continuing to lose
weight even though our Dr. had her on IV nutrition drips and loads of protein in
the diet, we were briefly convinced that she was already in an advanced stage.
We're no longer convinced of that. Weight loss could be from many factors and
nothing in the blood work or x-rays done pre-admission indicated anything that
drastic.
So. We assume that they will find some cancer and they will take out what they
can and then, probably, treat the rest with chemo over then next several months.
We won't know the extent of the spread (or the "stage" as they define it) until
sometime after the tumor is out and tested on Tues.
We are finally back on line at home. We will email Mon. night when we're told
(roughly) when she'll be in surgery. We'll email again Tues as soon as we know
something. Our telephone at home is (610) 644-2973.Our cell (which almost no
one knows about and which is seldom on) is (610) 639-9677. It's worth a try.
We're already pretty overwhelmed and may not want to field a lot of calls, but we
know that many of you will need to know sooner than we can get around to doing
it ourselves.
The folks at the theatre are organizing to look after all three of us when Ceal's
home and I'm in rehearsal and performance. The folks at the Friends Meeting
are doing likewise and will hold a special prayer meeting for Ceal on Tues.
Please keep her in your prayers. We'll be in touch.
with love, Peter
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Notes on Ceal's Recovery I
Malvern, 06/03/02
Dear Friends and Family,
For a few of you, this is last week's news. For all of us it came so suddenly that
we've been trying to catch up to the information and have had difficulty
processing and getting it out to those of you who we thought would need to
know. Here's a nutshell version:
Ceal recently needed a colonoscopy which took place on Thursday, May 23.
That and further testing confirmed that she needed surgery to remove a tumor.
Pre admission blood work and x-rays show no definite evidence of extensive
spread, but she will be admitted for treatment of colon cancer. She shows up
tomorrow morning at 7 am for surgery at 8:30. Paoli Memorial Hospital (610)
648-1000. She will be in for about a week and then will recover at home for
another 4-6 weeks. There will probably be a course of chemo starting soon, but
we won't know for sure until after surgery and then a few days for the pathology
lab's report.
Her spirits are good just now. She was about to open in the leading role in a
huge world premiere play at People's Light the day after the colonoscopy. We
had to cancel one preview but, other than that, Ceal played every performance
and was extraordinary. She will be replaced for the rest of the run, starting
tomorrow. It's a blessing to have good work to focus on. We've been through
the stage where we're convinced that the spread is extensive and untreatable
and we have come out the other end. Nothing but her weight loss indicates that;
and it can be attributed to many other causes. We truly do not know, however,
what will be found tomorrow. The range is great. Early and mid stage (and even
some late stage) colon cancer is curable in a large percentage of cases. We
have heard from good friends who have recently gone through this and we are
somewhat comforted. But each case is different.
We're writing today because we know you want to know. But we also know we're
not going to be in shape to handle a lot of calls and visits. I will email to this list
when there is news. The front desk at People's Light & Theatre Co. (610) 6471900 will be kept posted on Ceal's condition. Folks at the theatre and at our
Friends Meeting are organizing to help support all three of us--particularly when
Ceal is home and I have to be in rehearsal and performance. I will let you know
through this list if Ceal is in a place where she wants to see or hear from people.
In the mean time, think of her, pray for her, hold her in the light.
with love, Peter
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Notes on Ceal's Recovery II
Malvern, 06/06/02
Dear Friends and Family,
Ceal's recovery began this morning. I am sorry to tell you that it will, at best, be
long and very difficult. Without your concentrated prayers and healing thoughts,
it could in fact be in doubt.
The surgeon removed the affected section of the sigmoid colon (the lower end,
after the transverse section). Ceal's tumor was about 20 cm up the colon, so no
colostomy bag was needed. He found that the tumor had penetrated the outer
wall of the bowel and there was evidence of cancer in the lymph nodes close by
(some of which he removed with the section). There was also evidence of some
in the liver, though he could not tell to what extent.
This is definitively not good news. It is classified as Stage D colon cancer. We
will find out from the pathology report and from a CAT scan which will be
performed in a few days the extent of the involvement in the liver.
Ceal will unquestionably undergo an aggressive phase of chemotherapy.
Perhaps several. 5 year survival rates are low for Stage D, but it is not hopeless.
This is where you come in. I'm still learning a lot about this, so some of what I
have to say here may sound naive. It will probably take a miracle for Ceal to be
"cured." But I think she is ready to fight, and that is a miracle in itself. Ceal has
always sworn that she would never entertain the thought of chemo. I think that
she has been convinced, for the sake of her family and her friends, to do what
she needs to do to get through and stay with them. For the last week before the
operation she has been laying in eggs and fish and even drank chicken broth(!)
the whole day she was on a liquids only preparation diet. She's over in her
hospital bed at this moment, morphined out of her mind, but still making the
nurses teach her the inhalation therapy and foot exercises she will need to
recover a soon as possible from the surgery to be strong for the next step. And
she is said to be recovering quickly from surgery.
So a miracle is needed. This morning a circle of Quakers from our Meeting met
in the Maternity waiting room (as the chapel was being renovated) during
surgery. All through the theatre, prayer groups are forming for Ceal. Incense in
burning on Buddhist altars in NYC and elsewhere. Our friends from Cyprus who
are associated with a world-wide ministry are putting it into full swing. This is
what we can do right now to save Ceal. Pray and pray hard.
If prayer is not easy to you, do what Ceal sometimes does for others when no
words come: send a healing energy her way in the form of a positive vision of
her. Ceal loves her work, she loves to garden, she loves her family, she loves to
take long fast walks. Picture her confidently doing those things. A few weeks
ago we ordered her a lovely new Land's End "Tankini" swim suit (turquoise- if
you want to check it out in the catalog or on the web site). Ceal loves to splash
and float in gentle surf. When I'm at a loss for what to say next, I see her in that
suit floating in the Mediterranean and send that vision her way. Help me, please,
get here there for real.
Calls are still tough for me to handle and impossible for Ceal. The theatre (610)
647-1900 has reports. She will recover from surgery in Paoli Memorial Hospital,
rm. 208 for another 4 days and then will be at home. Jake brought her books
and flowers today.
With love and with hope, Peter
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Notes on Ceal's Recovery III
Malvern, 06/07/02
Friends & Family,
It's a little before 7pm on Fri. Ceal ate her first meal (all clear liquids, of course)
about an hour ago. Actually she started it then and is keeping it to luxuriate in all
evening, sipping slowly so as not to get nauseous before she FINISHES IT! She
has spent the last 2 days running laps of the ward with her IV in tow. They will
probably remove that tomorrow and then there's no holding her back. The
surgeon says she'll probably go home late Sun. or Mon.
She's had several visits from friends in the area and is cheered by them. Calls
are still difficult, just because it's tough for her to get to the phone most of the
time. (Also, she has a new, noisy roommate who kept her up most of last night
and she needs to nap during the day.) I carry in your piles of emails and cards
every day and she gets comfort from them.
I haven't written for a little while because we've had a couple of dark nights (and
days) of the soul since I last wrote. We're assessing options for treatment.
We're coming to terms with the range of possible outcomes from the various
treatments (none of them, in all probability, the very long, healthy active life we
planned to continue together).
With the help of friends and books, we're pulling out of the black hole and
beginning to appreciate that the difference between curing and healing is not just
semantic -- it is very real and very important to Ceal's recovery. We may still
hope and pray for the miracle of a "Cure," (and the statistics allow for that
possibility). But we can count on our ability, with your help, to begin the process
of healing Ceal.
Keep her in your thoughts and prayers. Pass the news along to anyone who
may know Ceal. I'll probably write next when we've got her at home.
love, Peter
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Home from the Hospital
Malvern, 06/09/02
Dear Family and Friends,
Yes, I'm out of the hospital, where the nurses were fantastic and said, "Come
back and see us." Well.... As wonderful as they were, it sure is better to be
home. I can't tell you how much I feel your prayers and thoughts and healing
vibes. I really feel we're plugged into the universe together. My soul's dark nights
of the last week have passed into positive thinking. I'm glad so many of you
believe in my toughness, because it makes me believe too. Pete and I are
going to seek support groups and counseling as well as the chemo that is
required. We're researching alternative healing techniques to augment the
chemo. We begin shopping tomorrow for oncologists. Please continue to wish
us luck. We love and appreciate you all. Actually, I can't find the words to
describe our gratitude.
Love, Ceal
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Heal Ceal! 1
Malvern, 06/24/02
Dear Friends & Family,
For a few of you this is news, sorry. For a few of you this is the first message
you've gotten from us although you've heard the news already. Our computer
crashed a little while ago and I'm just getting my address book back up.
For the rest of you this should make up for our not having been in touch for a
while. We haven't been in touch for a while because:
a) since Ceal came home from the hospital she's been healing (including a
one day return visit to the hospital last Sunday with a post-operative infection),
I've been rehearsing (open this week) and we've both been madly learning all we
can about her disease so that we can better fight it; and we've have had very little
time to correspond and;
b) we considered the play-room admonition that if you don't have anything
nice to say...
There's not much nice to say about Ceal's condition except that she continues to
astound all doctors involved with her strength and the speed of her recovery from
surgery. All the reports are now in and it is clear that she has stage 4 colon
cancer with 9 metastases in the liver (none of any measurable size found
anywhere else, so probably none). This is bad stuff. We've been "auditioning"
oncologists since the day after Ceal was released from the hospital. They use
phrases like "Your job is to stay alive until we find a cure for your type of cancer."
and "we measure response by a % shrinkage of the tumors and we measure
survival in units of 1 month." The statistics are discouraging for stage 4.
Depending on who you ask there is a 2% - 20% 5 year survival rate and the
average is 1 to 3 years.
We have decided on the following actions to combat the inertia in the medical
establishment that is bent on dragging Ceal into becoming a victim--the sick lady
in the chair getting no treatment but poisonous chemicals pumped into her to
extend her life for awhile:
1) We practice something called "Sacred Denial": a phrase given to us by a
couple of friends (one of whom is a naturopathic doctor who was diagnosed with
inoperable pancreatic cancer and given "6 months" about a week before we
found out about Ceal's condition). Statistics and percentages are only that.
Every case is different. SOMEONE is in that 2% - 20% even if it IS only 2%.
The statistics are ALL cases (including the very old and patients with many other
diseases along with the cancer) divided by the number and duration of survivors.
Ceal is considered by her doctors to be relatively young and very strong. One of
them told our GP, "That's some powerful protoplasm. I think I could keep her
alive for years." When folks tell us we've got to be realistic, we tell them, "No,
we don't." We try to follow a good Buddhist admonition that we should "first
prepare to die." And then not assume that that will necessarily occur in short
order if we apply ourselves to healing.
2) We recognize that there is no "cure" for this condition, but we determine to
learn as much as possible about ALL the things that are being done throughout
the world to fight it and to use as many of them as are remotely possible and
appropriate. Every thing we do (according to one expert we're about to contact)
increases the chance for survival by some percentage. If you stack up a lot of 5
and 10% increases, you've got a pretty good shot. To than end:
3) Working with our GP (who is an internist and runs a center for integrative
cancer treatment associated with Jefferson University Hospital in Philly) Ceal has
been on a very active regimen of homeopathic and naturopathic treatments since
before she went in for surgery. She gets I-V drips of immune system builders,
nutrients and anti-oxidants twice a week and takes an enormous number of pills
several times a day. I give her subcutaneous injections of mistletoe and she is
about to start a course of "anti-angiogenesis" medicine designed to interfere with
the tumors' ability to grow by denying them the means of creating new blood
supply. Ceal eats as much as she can as many times in the day as she can.
One of her favorites is a "Sun Soup" we make of Chinese medicinal mushrooms,
herbs and beans. It's been used as the only treatment in the cure of stage 4
cancer in documented cases. We're looking into oxygenation therapy and
hyperthermia. We've got our passports in order and almost flew to one of a few
klinics in Germany and Denmark we've been talking to about treatments. (We
still hold that as a future possibility.) We are contacting a surgical group in Philly
that is working with Radio Frequency Tumor Ablation--a new out-patient surgical
procedure to kill the liver metastases with probes creating a temperature of about
160F.
4) We employ the mind's power to heal the body. Ceal does a good deal of
healing meditation. Many friends have sent or brought books (I don't think we'll
get through all of them for a while.) A friend from our Quaker meeting sits with
her often to lead guided meditation. Ceal does calm, healing meditations; but
she also does "Mean Meditations. "In these she uses directed imagery on the
disease. In the hospital, she did a double take when she saw a picture in the
paper of the firefighters digging clear cut and setting backfires to stop fires raging
in the west because that is one of her favorite images in her work against the
disease. She blasts it with blow torches. She is merciless.
5) While we decline meekly to accept the statistics of the pharmaceuticalcompany-controlled-American-medical-establishment, we certainly don't decline
to accept what they have of value to offer. Chemotherapy is considered by
virtually everyone with whom we've talked to have a good chance of helping
shrink the tumors and give a lot of these other therapies a chance to work more
effectively. We've been in touch with the Fox Chase Cancer Center, Jefferson
University Hospital and the Hospital of the University of Penn. locally. Through
friends and family in NY, we're in touch with some specialists at Memorial Sloane
Kettering.
We met with an Oncologist on Friday whom we liked very much. We had an
appointment with our 4th scheduled today. We were in no hurry and wanted to
see a few more. We also wanted to make sure that whoever we chose, much as
we might like him or her, would be someone who would work in concert with our
GP and continue the integrative work we're doing already. Last night (Sunday)
Ceal started to experience some considerable abdominal pain. It continued into
the morning. Our usual Monday morning visit to our GP confirmed that it was the
onset of pain from the liver metastases. He called the Oncologist we met and
liked on Friday. They got on well and it was clear that they could work together.
They set up an appointment for 11:30 and now Ceal is through her first dose of
chemotherapy. She didn't experience any of the possible "immediate" side
effects, which is a good sign, though not an indication that it will all be clear
sailing. We are experiencing some relief in just getting started.
She'll be going in every Monday afternoon for the next 3 weeks. Then 2 weeks
off. Then on for the next 4 weeks, and so on. Help Ceal with her imagery.
Monday afternoons (and periodically throughout the week) come up with some
terrifically MEAN image of the horrible death by poisoning or fire or something
equally nasty of all those flaccid, weak, pasty, parasitic cancer cells. Then
periodically throughout the week, imagine Ceal free from suffering, at peace,
healing in whatever vision of strength and happiness you've been using for her
(and, believe me, we are sustained by the many images you've been sending
us).
As many many people have told us over the last month, one of Ceal's great
strengths is the fact that she is so well and so widely loved. Our immediate
communities (the theatre and our Quaker Meeting) have taken us in hand. They
organize care and feeding. Someone is always around for the jobs we don't
have time or strength for: driving Jake around (he's taking a summer class at the
theatre and working backstage on the show about to open), shopping, etc. Two
strong young guys just came over to install an AC unit in the bedroom to help
Ceal with the heat this week. We are thankful for all your support from near and
far.
Ceal defied the statistics by contracting this disease. She profoundly doesn't fit
the profile for susceptibility for colon cancer (which is why the minor symptoms
were allowed to go on so long ignored as something less dangerous). Using our
sacred denial, all the means of standard and alternative medical practice and,
most importantly, the thoughts and prayers of her many friends, we mean for her
defy the statistics that say she can't survive it.
with great love, Peter (& Ceal)
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Heal Ceal! 2
Malvern, 07/14/02
Dear Friends & Family,
Once again, I've delayed writing until we have something at least a little positive
to report. It's sort of odd to type that here in the hospital on the laptop I've
brought because Ceal is going to be back in here for at least a week. But it is so.
When I wrote last Ceal had just started chemo with her Oncologist, Michel
Hoessly. She has now been through 3 weeks of treatment. Today was to have
been her 4th, followed by 2 weeks off.
Ceal gets once a week IV drips of the "Saltz Regimen" -- a small bag of an antiemetic (helps ya not throw up), a big bag of Camptosar (a relatively new and
quite caustic chemo agent), a small bag of Leukovorin (a vitamin mix tailored to
enhance the effect of the last drug) and a final rapid injection ("push") into the IV
line of the 50 year old stand-by drug "5-FU." The whole routine takes about 2
hours after the15 minute exam by the oncologist. It's in a small office near the
hospital in a pleasant lounge sort of room with about 6 comfy chairs and great
nurses. We're getting to know all the other patients who show up at the same
time on Monday.
After the first two sessions, Ceal experienced not much in the way of side effects.
She had a little fatigue and developed a strange rash that we've come to believe
is the result of eating unbelievable quantities of soy products (including
thousands of calories a day in shakes made with a soy-based weight-on
product).
Following the 3rd session, all hell broke loose. Her white blood cell count
plummeted, she was extremely tired, she developed pain in her upper belly, then
diarrhea, and then began to run a high fever. A friend took her to the emergency
room Saturday between my matinee and evening show and she was admitted
that night. They are controlling the infection with various antibiotics and expect
her to be in for about a week. They are giving her other stuff to rebuild the white
blood cells and control the diarrhea, nausea and vomiting that are the result of
the infection. She is isolated in a private room and visitors have to clear the
nurses' station and wash hands, etc. before going in. No flowers, no fresh fruit or
veggies, etc. She's in better shape already, but still weak and experiencing a lot
of intestinal difficulties.
So where's that good news? you ask. You'll remember from the last message
that Ceal started chemo earlier than expected because she was beginning to
experience some pain from the tumors that had developed in her liver after
metastasizing from the colon. The oncologist prescribed some heavy duty pain
meds to relieve that. Ceal took those for 2 days and on the third morning (after
her first chemo session) she woke without pain. It returned a few days later and
has come and gone over the last few weeks, but she has needed pain meds only
2 or 3 days since starting chemo.
The Saltz 3-drug regimen produces a beneficial effect in fewer than 50% of
patients with stage IV colo-rectal cancer. So most of the people in Ceal's
condition get all the side effects and little or no positive results. Neither we nor
any of our doctors want to be on record as reading too much into anything, but
with little good news to find, we grab what we can. Everyone agrees that the fact
that Ceal's pain has not increased from its onset and has in fact decreased
somewhat, is potentially a good sign that the chemo is working.
The oncologist will keep her in the hospital until the white cells are at a good level
and she is active and strong. He expects her to begin to be able to start putting
on some weight soon. (She was never very big and has lost a lot in the last 2
months.) He will give her a week off chemo after she's out and then will probably
put her on a schedule of every-other-week treatments. He wants to make sure
that she continues getting the drugs that he now has a high level of confidence
are doing their job of shrinking the tumors and killing off the free cancer cells
while not overwhelming her system and putting her back in the hospital. He will
adjust his treatment schedule to allow us to travel in August if she seems up to it,
so we're looking into some possibilities.
Ceal was to start team-teaching a 3-week class for teens at the theatre today.
We have great employers/fellow-workers/friends who are making this possible for
all of us. I help a bit to cover for Ceal on that class while still doing my show in
the evenings. The theatre continues to rally to support us all. Jake just finished
an earlier 3-week class at the theatre and is now participating in this one. He
also works on my show at night and on weekends. We've determined with our
friend who directs the theatre that it would be wiser for Ceal to concentrate on
healing this fall and not to try to rehearse and perform a show as scheduled. She
will be teaching two advanced classes in our theatre school (with me and several
other actors ready to cover for her if necessary).
We continue to work with our friend and GP, Ira Cantor and his wife and RN,
Jeannie, on complimentary and alternative treatments. We continue to explore
future palliative and now possibly curative(!) options: surgery, radio-frequency
ablation, etc. We need to get through a few months of the current treatment,
however, to see if the tumors shrink or vanish (!). We continue to look at
treatment options available in other countries as a follow-up, supplement or
replacement for the current treatment. We continue to pray and to heal through
meditations both kind and MEAN! We hope you continue to send Ceal your own
brand of healing energy. We mean to get her through this.
Ceal sends her love and her intense gratitude for all your emails, cards and
support. We're in a little bit of overwhelm at the moment. I can print out emails
and carry cards to the hospital. We can't handle calls very well. Don't send
flowers.
With love and hope,
Peter (& Ceal)
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Heal Ceal! 3
Malvern, 07/29/02
Dear friends & family,
It's Monday, 7/29, and I'm writing this beside Ceal in the Chemo room of Dr.
Hoessly's office. Ceal came home from the hospital a week ago on her birthday.
She was in for nearly 10 days and most of that time she was isolated because of
her neutropenic condition. She was the "Masked Flash"--running laps in her
surgical mask and pushing her IV. There were some pretty rough days in the
hospital, but she got through them with the excellent care of a bunch of terrific
and quite overworked nurses and techs. She had careful visits from several
friends and students (from the summer class that started the first Monday she
was in). Nurses quizzed visitors regarding any infections they might have and
made sure they washed hands before proceeding through the 2 doors into Ceal's
private room. She also had visits from some of the nurses and tech we
befriended while she was on the floor below during her last 2 stays. She had
pretty severe diarrhea from the infection that put her in the hospital. That,
together with the cancer-induced anorexia that she had been experiencing before
going in, dropped her protein level so low that she developed extensive edema--
a swelling that occurs when the blood vessels allow water to leech through and
slosh around wherever gravity takes it. That condition wasn't helped by the
gallons of IV liquids that were being pumped into her. The swelling and the
effects of the chemo on her once proud and prominent arm veins transformed
her from an IV tech's dream into a nightmare of poking and prodding. The upshot
was that she came out of the hospital with about 15-20 pounds of extra water
swelling her legs and feet; and the need for the surgical implantation of a "mediport" to facilitate access to her veins. After a few days out, she was put on a
diuretic to help reduce the swelling, which was making it difficult to walk.
However, the diuretic is much more effective at removing the water that is readily
available in the veins than at reversing the osmosis and getting the extra stuff
back into her veins from her swollen legs. So taking too much too fast can lower
blood pressure dangerously. After about 5 days of that careful dance, she has
her own legs back and only a little swelling in her feet. She's back to a slow daily
walk. She had outpatient surgery on Friday to have the medi-port implanted in
the left side of her chest. It allows easy and instant access to the sub-claviary
(sp?) vein. The port is in use at the moment for this week's chemo treatment. A
lot of tests were done in the Emergency Room before Ceal was admitted this
time. So there was a lot of new info for our Oncologist to sort through. We've
mentioned Dr. Hoessly before. We find him quite personable, compassionate and
straightforward. However, he's very circumspect. Anything that we think might be
a really good sign, he tends to say things like: "Well, we don't want to read too
much into things at this early stage of treatment, but that could possibly prove to
be a positive indication." So he walks into Ceal's hospital room on Tuesday and
says, "I've got some good news." Floored us. We weren't sure he was familiar
with the phrase. There is a blood protein called CEA, which is produced by a
growing colon cancer tumor. For some reason there is a "normal" level (which I
guess all of us have) of 2.5. After her surgery and the removal of the colon tumor,
Ceal's CEA level was over 260. That's pretty bad, but we've heard of levels over
2,400. The blood work they did in the ER showed that she was already down to
about 65 after 6 weeks of alternative treatment and 3 weeks of chemo. That
means, essentially, that 75% of the disease that was still aggressively at work
after surgery is no longer alive. You'll remember from the last email that over
50% of stage IV colon cancer patients have no positive response to the chemo
treatment. It is clear to all that Ceal is one of those who does respond. The
tumors are in retreat for the present. Dr. Hoessly is changing her schedule to
every other week for chemo. He says he fully expects that will "continue reducing
the tumors" while allowing her to live a relatively normal life with few noticeable
side effects. He expects her to start putting on weight soon (now that the tumors
are diminishing). He is delighted to hear of her large appetite and about how
much fish and how many eggs she's putting away. We have become extremely
sensitive to the subtle atmospherics of this world of cancer. Phrases like
"continue reducing the tumors" don't escape us. Since Ceal's admission to the
hospital this time, we've noticed a slight change in his way of dealing with us.
He's always been kind and solicitous, but with a certain reserve that we thought
was just the oncologist's defense against the despair of losing patients. Lately he
seems to be opening up a little more--as if we're no longer a 6-12 month case,
but one he's in with for the long haul. He had another of his patients call Ceal in
the hospital to talk to her about his similar experience with the same treatment for
the same stage of colon cancer. Walt, like Ceal, was diagnosed (at age 65 in
1999) with inoperable multiple liver metastases from colon cancer. He was put on
the same chemo schedule and, like Ceal, ended up in the hospital with
neutropenia. He was in over 2 weeks and nearly died from it. He went on the
every-other-week schedule and his tumors responded so well that he became a
candidate for liver resection. He had that operation and is now on a maintenance
regimen of oral chemo. He's not "cured" but he's surviving and thriving. He called
Ceal on his 68th birthday. None of this assures us that Ceal will be able to have
the affected section of her liver removed anytime soon (if ever). But we allow
ourselves to think of that possibility now and imagine that Dr. Hoessly wouldn't
have had Walt call if he didn't feel that Ceal might have a good chance to follow
his track. A friend at Memorial Sloane Kettering confirms that the CEA numbers
indicate progress toward that end and encourages us to consider looking into it
soon. Liver resection is the only means of effecting a cure for this condition that
is practiced in the US and it is considered practical for a very limited number of
Stage IV patients. This is the first time that anyone's thought it might be possible
for Ceal. I read Lance Armstrong's book about surviving Stage IV cancer, "It's
Not About the Bike" (appropriately enough, as he was winning his 4th Tour). He's
a far cry from quiet, Quaker Ceal. However, he talks about himself in terms that I
find familiar. He wasn't much at standard sports in school but quickly discovered
that, if what it took to win was putting your head down and taking the pain longer
than anyone else was willing to take it, he could beat anyone he came up
against. Ceal, in her own quiet way, was a nationally ranked distance runner and
a state marathon record-holder. She knows what it is to keep going through pain
and against odds. I think a lot of people might have given up already in her
situation. Many friends have said that if anyone can get through this, she can.
Things accumulate to give hope that she might. Hold her in the light. With love,
Peter (and Ceal—who will soon write)
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Snail Mail to India
August 2, 2002
Vijay Pandit, Superintendent
Mahipathram Rupram Ashram
Outside Raipur Gate,
Ahmedabad-380022
Gujarat
INDIA
Dear Vijaybhai,
I’m enclosing two pictures so that you might better remember us. You helped my
wife and me in 1988 to make arrangements to bring our son, Jake (Bansi) to the
US from Mahipathram Rupram Ashram in 1989. You helped us again when we
returned with Jake to visit in 1997. (After that visit, we were able to raise some
money for the support of the Ashram. We sent that to you through a couple from
the Virgin Islands who were traveling to Ahmadabad to pick up their child from
you.) Now we need your help again. My dear wife, Ceal, is very ill with an
advanced stage of colon cancer. We are doing all that is medically possible here
in the US. And Ceal is responding very well to the treatment. However, this is a
disease that a very small percentage of people are able to survive. We are
praying hard for a miracle and for Ceal to be in that small percentage of
survivors. We have asked friends all over the world to pray with us. I am writing
today to ask you and your friends who might have met Ceal and for the workers
and children of the Ashram to pray for her. Please pray that she be given
strength, health and courage. Pray that she will be held safely in God’s hands.
Pray that she be given this chance to continue doing the hundreds of things for
the good of the world that she has done so well for so many years. Thank you for
all your help in the past: for keeping our son safe and making it possible for him
to join us here; for helping us when we brought him back to see the country of his
birth. And now thank you for this, most important help. Pray for Ceal!
Yours very truly,
Peter DeLaurier
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Ceal's Condition
Malvern, 08/17/02
Dear Friends,
Some of you know most of this already. To some of you this is news. Sorry for
the delay, sorry for the news. Our computer crashed shortly before Ceal’s
surgery in early June. Between coping with her condition (details to follow) and
opening and running a show over the summer, I’ve not had much luck rebuilding
our email address book Consequently many of you who probably would have
liked to know earlier have fallen through the cracks. On June 4th after being
replaced halfway through the run as the lead in a huge world-premiere show at
our theatre, Ceal had a section of her sigmoid colon removed together with a
rather large malignant tumor and several affected lymph nodes. Later tests
showed that the cancer had metastasized to her liver in 9 tumors (2 rather
large). It does not seem to be anywhere else. This is bad stuff. The statistics are
daunting. Depending on whom you talk to, the 5-year survival rate for Stage IV
Colon Cancer is 2-20%. We’ve gone through great despair and have acquired
(with the help of many friends and loved ones) great hope. We practice “sacred
denial” when it comes to statistics. Someone is in that 2-20% even if it is only
2%. Ceal is as likely to survive as nearly anyone. She is relatively young and
very strong for a colon cancer patient. The percentages are based on the few
survivors divided by all the patients (including the very old and those with many
other complicating conditions). We are working with an excellent Oncologist and
Ceal is responding to the 3-drug treatment that is standard for this disease. Over
half of stage IV colon cancer patients have no positive response to these drugs.
The size of Ceal’s post-operative disease (as measured by a blood enzyme
“tumor marker”) was reduced by 75% in 6 weeks of alternative treatment and 3
weeks of standard chemotherapy. Our family doctor (and friend) is an internist
who is a leader and organizer in the American alternative/complementary cancer
therapy field. Ceal is in good hands. Ceal is a “battling Quaker”—a quiet fighter
who means to do everything she can to beat this disease. I read Lance
Armstrong's book about surviving Stage IV cancer, "It's Not About the Bike"
(appropriately enough, as he was winning his 4th Tour de France). He's a far cry
from quiet, Quaker Ceal. However, he talks about himself in terms that I find
familiar. He wasn't much at standard sports in school but quickly discovered that,
if what it took to win was putting your head down and taking the pain longer than
anyone else was willing to take it, he could beat anyone he came up against.
Ceal, in her own quiet way, was a nationally ranked distance runner and a state
record-holder in the marathon. She knows what it is to keep going through pain
and against odds. I think a lot of people might have given up already in her
situation. Many friends have said that if anyone can get through this, she can.
Things accumulate to give hope that she might. We have had many very rough
times in the last 3 months and will have many more, we are sure. Ceal has been
hospitalized 4 times: 2 surgeries and 2 serious infections (one of which kept her
in isolation for nearly 10 days). There have been times when the cure was so
bad that it almost seemed to her that allowing the disease to progress rapidly
might be easier. We have kept on with the help of our friends. Now that I’m
finally getting addresses back where they belong, we want to add you to that
group. All over the world, people have been praying for Ceal and sending her
healing thoughts and energy. We need that. It sustains us. Please hold Ceal in
the light as she struggles to overcome this. Imagine her strong, healthy and
serving this world as she has for so long. Imagination and prayer are powerful
forces in fighting disease. Ceal meditates for quite a while each day. Please add
her to your thoughts and prayers and pass this information along to anyone you
know who might know Ceal or be able to help her. I have been sending
information regularly to a growing list of friends and family for a while. I’ll now
add you to that list and follow this with the latest installment. Yours in hope, Peter
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Heal Ceal! 4
Malvern, 08/18/02
Dear Friends & Family,
Well, it’s many steps forward and a few back. I almost wish I could have written
3 days ago before the few steps back.
Jake’s and my show closed Aug. 4th. I am infinitely indebted to the folks who run
our theatre; to my fellow players and the stage management staff who kept me
focused and supported me through a very difficult show and period in my life.
The last 2 Sundays, we had a great potluck between the matinee and evening
shows. Mark smoked huge amounts of salmon and we all brought in stuff to
share. Ceal joined us and everyone had a great time together.
On Tues. last week, we drove with Jake up to Falmouth, MA where Ceal’s sister
and brother-in-law have a beautiful house 2 minutes from the beach. They kindly
gave us the master suite on the 2nd floor and we had a view of the ocean and
Martha’s Vineyard from our deck or our king-sized bed. We rented a tandem
bike for a day (I was a little worried about Ceal’s balance and strength on the few
hills on Cape Cod). After staying married for that day on the bike we kept it for
the week. We usually rode over an hour a day and walked an additional hour to
boot. Ceal got stronger every day. Toward the end of the week we did a 3.5mile charity walk-a-thon to support the Cape Cod free clinic. All the fish is fresh
and wonderful and we ate unbelievable amounts of it each day. We drove out to
Chatham to visit friends from the theatre for a day. We read, wrote, meditated,
talked, went to movies and the beach, played miniature golf and bowled.
All in all, it was a great trip. The Oncologist told us that his hope for the new
every-other-week chemo regimen was that it would continue to kill the tumors
while allowing Ceal to put on weight and live virtually free from side-effects. This
seemed the beginning of that new, more stable, phase of her healing. Indeed, it
may be. But we ain’t out of the woods yet, if we can even actually see the edge
thereof. Ceal did put on 6 pounds in the last 10 days. She looks more like
herself (we’ll try to post pix with the next message). So you’re waiting for the
other shoe to drop just as we were.
We got back to Malvern on Mon. and Ceal went in for her routine blood work on
Tues. in prep for her chemo treatment on Wed. Tues. afternoon we got a call
from the Oncologist’s office saying that the tests showed very low hemoglobin
and white counts and, not only was she not in condition for chemo the next day,
but she needed to come in to the Cancer Center to get a blood transfusion to
help build her red count back up. So, on Wed. she got that instead of chemo..
The low blood count and returning edema in her feet and ankles are reactions to
chemo and another med she’s been taking. Our doctor has substantially lowered
the dose of that med. and we asked that it be lowered further..
The main problem at present is that Ceal can’t get her next chemo treatment until
the blood counts are back up. She’s scheduled for testing and possible
treatment next Wed. That blows holes in our next 2planned trips. We’re
scrambling trying to figure out how we can still get out to Kansas City to see my
family there. The airlines no longer recognize medical emergencies and have
eliminated stand-by flying. Ceal also needs the next treatment fairly soon to
keep ahead of the disease. She was off chemo for 3 weeks in July while in the
hospital and recovering and it will be over 3 weeks since that last treatment if she
is treated next Wed. The pain is starting to nibble at her again and we are
anxious to get on top of it. I hope my next message is full of the positive results
of this new regimen.
Some good stuff:
Tibetan “long-life” prayer flags wave over our yard—a gift from our friends who
are also dealing with cancer. They are off to Europe again this week for another
treatment in Germany and a new intracellular hyper-thermia treatment in northern
Italy. This new treatment is quite remarkable. Patients they know have traveled
there with abdomens extended with disease, not expecting to return alive and
have returned disease-free.
We have great family and friends. Your messages, visits, cards, calls and
prayers sustain us. Please keep them coming.
Love, Peter
Here’s Ceal: I find joy in work, and was able to teach for a week and a half with
the teen program of our theatre’s Summer Stage after I got out of the hospital. It
was an extraordinary group of kids, including Jake, who was positively brilliant in
a monologue from Anna Deveare Smith’s “Twilight.”
Actually, this bend in the river shows me how much joy there is everyday, in
everyday things. I sometimes yearn for the Before – especially in athletics and
gardening – but sure have a new perspective on the preciousness of the
moment.
I’m slated to teach again in the fall and plan to direct a one-woman show based
on “The Poisonwood Bible.”
More thanks than I can express to all of you for your tangible and spiritual
support.
Love, Ceal (and Peter – whose heroism through all this has been incredible)
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Healthy News
Malvern, 09/10/02
Hi everyone Pete and I just returned from a week on Lake Muskoka in Ontario. Prior to that,
we were able to visit Pete's folks in Kansas City, unfortunately for only a long
weekend; we hope to get back again to catch up and visit for a much longer time.
A friend made that visit possible by forking over about a zillion frequent flier miles
for us. Owing in large part to your thoughts, prayers, healing vibes and
heartening support, the two of us walked and canoed each day in Muskoka and
swam a little (when the lake temperature became bearable). The tranquility of
the place and the wonderful company of our friends Peter and Fran Carnahan,
who have opened their summer home to us so often, de-stressed us and gave us
joyful days. So our thanks to all of you who helped me get strong enough for an
active vacation, and helped Peter's blood pressure take a plunge. So....back to
chemo today. My white cell count is much improved with a new (6-month-old)
drug injected the day after a chemo dose. Please keep those strengthening
prayers, vibes etc. coming - I'll need them!!
Love, Ceal and Peter
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Heal Ceal! 5
Malvern 09/26/02
Dear Family and Friends,
Ceal was sitting in the oncologist's lovely back room on Monday at noon getting
her bi-weekly dose of toxins (as she says) as the equinox came through
Malvern. This morning was cool and misty ("a fine, soft day, by th' grace o' God,"
as the Irish would say) and it was clear that we have seen the end of summer.
We have mixed feelings about that. This was a summer with many faces. Of
those, one we're happy to see the end of--one straight out of hell--a bizarre,
unreal, terrifying time that saw us clutching and sliding out of control through the
end of May until we fell through a hole in our lives on the 4th of June. But, while
we were down there in that wild shadowland--in and out of hospital, dragging
from doctor to doctor vainly seeking good news, running from work to hospital,
eating every meal out of old yogurt containers, wondering who'll look after Ceal
while I'm at work tonight--we learned how many friends we had and how much
we are cared for. The summer also had better times--times we will miss. While
still shifting considerably and giving us many frights, Ceal's condition became
relatively stable by the end of July. She finally started being able to eat and did
so with great appetite. She put on weight. It was clear that she was responding
to the treatments and that the disease was, not only not progressing, but in
retreat. We were able to visit family and friends and to receive very welcome
visitors. Now we're here in the beginning of autumn learning to come to terms
with a "new normal." I've started back to work rehearsing "A Delicate Balance."
Ceal was originally cast in that show but was replaced early in the summer
because of the volatility of her illness. She is teaching two classes in our
theatre's school and recently got a job teaching an acting class at a local
community college. After 6 weeks of being rarely out of each other's company
for more than an hour, we're now rarely together. Ceal's condition continues to
be stable and possibly improving. She continues to build weight and strength.
She walks an hour a day and has been jogging for between 10 and 30 minutes of
that time for the last couple of weeks. Both of her principal doctors are pleased
with the rate of her healing. The oncologist--circumspect as ever--can't help but
beam when he sees her increased weight and high blood counts (aided by a new
drug for which our insurance company pays thousands of dollars per injection!).
Our GP, conservative as ever, has begun to suggest the possibility of our being
able to consider Ceal's disease someday as a "chronic" (something that you
always have to deal with--like diabetes) rather than "progressive" (read
"terminal") one. So, my answer when folks ask: "How's Ceal doing?" is
something like: "We're not out of the woods yet by any means..." ("out of the
woods" for you desert dwellers and English-as-a-second-languagers is an
American idiom meaning: "out of a dangerous, life threatening situation.") "...but
we're getting familiar with these woods. We're starting to find paths we can use
to move around in them and thinking we may someday be able to find a clearing
where we can camp here productively for a long time." Ceal continues to work
hard at healing. In addition to the every other week chemo, she does her
mistletoe injections and the wide assortment of homeo/naturo-pathic
supplements. She does acupuncture and Chinese herbal treatments and just
recently started oxygenation therapy (regularly practiced all over Europe). She
does daily healing meditations and we feel that those, together with your healing
thoughts and prayers, are largely responsible for the positive attitude which
certainly helps in the healing process. We're looking for a new phrase to
describe where she is now. The common ones don't work well for Ceal: "living
with cancer" is much too passive and accommodating and "fighting" and "battling
cancer" seem a bit un-Quakerly. I favor something like "defying" or "thwarting
cancer." Any ideas? Part of our "new normal" will be less frequent missives like
this one. It is our hope that Ceal will remain stable and that we'll just have to say
the same things every 2 weeks if we keep up at this rate. There is a "Donor
Fatigue" phenomenon that major NGO's have observed over chronic trouble
spots around the world. We know you probably want to remain informed, but we
don't want to tire you out. What we DO want is your continued psychic
contribution to Ceal's healing. We're certain that your healing thoughts and
prayers have helped and will continue to help. Please try to find a time (even for
a minute) each day to think of Ceal. Ceal, and many other people with the
disease, come to think of cancer as an opportunity: for learning, for changing.
We've certainly learned. We've learned patience. We've learned not to grasp
quite so much. I've learned that there are some things I'll never find the skill,
strength, craft or perseverance to fix. Ceal has learned that even one who
always helps must sometimes accept help. We've learned to be thankful for our
families and our friends and for thousands of small things we overlooked before.
We've learned that every day we wake up beside each other is a blessing. with
love, Peter (& Ceal)
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Heal Ceal! 6
Malvern, 10/27/02
Dear Friends & Family,
As hoped for and predicted, there is not a lot to report. Ceal continues to feel
surprisingly good. The chemotherapy is doing an excellent job against the
disease in concert with the many alternative therapies she is doing. She's
tolerating it pretty well, too—just a little fatigue and queasiness. Her energy and
her spirits are good. She exercises over an hour a day—one of the best ways to
fight chemo fatigue—and she is now jogging (quite steadily, if not up to her old
marathon record pace) for as much as 45 minutes of that time. Last Saturday,
with friend and co-worker, Larry Malvern, she did the 8.2 mile AIDS WALK in
Philadelphia as our theatre's team. They had raised a good bit of money to
support research. She has gotten back up to her pre-operative weight and is still
working to put on more.
Both doctors following her case closely were very pleased and a little surprised at
two recent developments: You may remember that in July(when she went into
the hospital for the 3rd time) she was re-tested for a blood enzyme that the
doctors use to mark the progress of the disease. CEA is usually produced by
young, aggressively growing colon cancer cells. For some reason, there is a
"normal" range of 1-2. After surgery, Ceal's level was elevated to over 260. In
July, it had already dropped to a little over 60. Two weeks ago it was 1.7--back
in the normal range. Her liver (in which the only metastases have been
found)was quite swollen and lumpy over the summer. Both doctors have
recently commented on the fact that is has gotten smaller and softer. None of this
means that she is "cured." Stage IV colon cancer is a very persistent and
aggressive disease and could easily come back if the treatment regimen were
halted. But these are VERY GOOD signs. In about a month the Oncologist will
order a new C/T scan to see more clearly what effect the treatments have had on
the tumors.
I’m writing tonight backstage at the theatre. We opened “A Delicate Balance” last
night and it’s going very well. Ceal flew this morning to Indianapolis to see the
closing performance tonight of “He Held Me Grand,” a play by our friend, James
Still. She was playing the lead in the world premiere of that play in June when
she had to drop out to go into the hospital for the first time. The Indiana
Repertory Theatre production involves many friends including Ceal’s college
roommate Priscilla Lindsay in the role Ceal played. Pris’s husband, Richard,
spent last year recovering from colon cancer and they have been very supportive
through all of this. It’s great for all that Ceal is up to the trip. It’s a little strange
being left here at home. We’ve not been apart since she was diagnosed. Her
growing strength allows and/or necessitates my “letting go hold…” as Thorton
Wilder would have it. It’s a good but slightly confusing thing.
We’ve been made aware of a new treatment being done only at a small
outpatient clinic in western Ireland. Photodynamic Therapy exploits the fact that
cancer hates light. It has been approved by the FDA for treatment of certain
cancers in the US—usually those close the surface or easy to reach with fiberoptic light. At this clinic in Ireland they have found a new drug which
accumulates rapidly in abnormal cells and makes them ultra-sensitive to light.
They then locate the accumulations and hit them with infrared and laser light and
are able to reach quite deep tumors in this way. They cite a man with liver mets
from colon cancer much worse than Ceal’s who, after one treatment, was
completely clear. They say that one of the principal side effects from the
treatment is discomfort from the rapid death and breakdown of tumor tissue and
the body’s difficulty in removing it quickly enough. It is done on an outpatient
basis and is non-invasive. (For those who would like to know more, click on this
link: http://www.cancerclt.com/) This therapy is new and there are no long-term
studies of its effects. It’s also outrageously expensive and not covered by
insurance. We’re looking into this treatment for somewhere down the road, in
case the current regimens should begin to fail or become too difficult to continue.
It's cutting edge treatment and is getting a lot of support from leaders in the
international complementary and alternative cancer care community. Our GP is
closely connected to some of those folk and is trying to find out if Ceal could be
treated for a shorter time (perhaps without the week-long stay at the posh local
health spa) and at considerably less expense than usual. We’ll find out soon
about that. Our Quaker Meeting has a fund for “needy friends” and several kind
people there have suggested that it is available for Ceal’s use if there are
expenses that would overtax our insurance coverage and savings.
All that, as I said before, is somewhere down the road. Coincidentally though,
when we were visiting them in August, my parents wondered if we might be in a
position to join them for a short trip to Ireland sometime next year. It sounded
good at the time and even better now. We may go in March to look over the
clinic and meet the doctors as a part of that trip.
For now, we still believe that your continued prayers and healing thoughts in
combination with Ceal’s ongoing healing meditations are some of the best
therapy she does. When someone at our Friends Meeting is in need of prayer
and healing, Quakers ask that we “Hold her in the Light.” So please remember:
Cancer hates light, so hold Ceal in it!
With love and hope,
Peter (& Ceal)
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Heal Ceal! 7
Malvern, 11/29/02 Thanksgiving
Dear Friends & Family,
We have much for which to be thankful this year. We have each other and we
have Jake and Nok whose concern has helped us both in the last 6months. We
have two loving families who send us support from near and far. We have
families beyond our families of origin. We have good friends across the country
and around the world. We have the members and attenders at Willistown
Friends Meeting--especially Ellen Hill and Sue Bickel who stayed with Ceal and
organized others to help when I couldn't be at home through the summer. We
are so lucky to be a part of the People's Light & Theatre Company. The support
we've gotten from Abbey Adams, Grace Grillet and the whole company and staff
is truly extraordinary. We are also blessed with the care of some excellent
medical folks. Our friends Dr. Ira Cantor and his wife, Jeannie--our GP& our
nurse--have encouraged and cared for us and helped us in so many ways. We
were very lucky to have found our oncologist, Dr. Michel Hoessly, and his
excellent, caring and supportive staff. Cara Frank, through acupuncture and truly
nasty Chinese herbal teas, has gotten Ceal through 5 months of chemo with only
very minor side effects. Dr. Stephen Halbert's staff increases the effectiveness of
the chemo through oxygenation treatments. Dr. Dennis Mariano (found for us by
Nok) is doing chiropractic adjustments on Ceal to raise her comfort level and
immune system response. We have also gotten excellent advice and support
from our friends Dr. John Foster (who is fighting his own battle with pancreatic
cancer) and his wife, Angie.
Their combined work, together with Ceal's careful adherence to their(sometimes
very difficult) protocols and her daily meditations have brought about an excellent
result so far. Maybe it's something shy of the miracle we've all been hoping and
praying for, but it's beyond anything any of the doctors expected.
Ceal was rescanned and retested a little in advance of her 6 month mark
because of some pain in the area of her liver. We got the results last week: The
CEA levels (the blood enzyme tumor marker) remain in the normal range and
have even dropped slightly from the test I reported to you last month. The C/T
scan was so positive that Jeannie Cantor called us over the weekend to give us
the news as early as possible.
I quote from the report: "The lung bases remain clear. Again noted are multiple
hepatic (liver) masses consistent with metastatic disease. These metastases
have dramatically decreased in size since the 6/16/02study. ... IMPRESSION:
Significantly improved hepatic metastatic disease since 6/16/02. ... there is no
evidence of new metastatic disease..." The report noted that the two largest
tumors had dropped in size from 4.5 x 4.5cm to 1.6 x 1.6cm and 1.7 x 1.4cm.
That is (very roughly) dropping from the size of a medium sized lemon to that of a
medium sized grape. Depending on how you do the math it's a reduction of
something between 65 and 85%! On Monday I spoke to the radiologist who
wrote the report. He said that the smaller tumors shrank commensurately though
they are mostly so small that the change is barely noticeable. He cautioned that
with metastatic disease, even if the masses disappear completely, it is safer to
assume that they are still there and just too small to measure. However, he said
that it was, overall, a great result--a feeling shared by both of Ceal's doctors. Dr.
Hoessly told her that he had expected the report to show some improvement
judging from her level of energy and her ability to put on weight, but he definitely
had not expected anything this good. The nurses at her chemo session last
week were asking, "So what is this Dr. Cantor doing to you?"
Indeed, we have much for which to be thankful. We're thankful for each day we
have together and these results suggest that we may have very many of them to
keep up this struggle. I'll go on giving Ceal mistletoe shots in the belly every
other day. She'll go on ingesting hands-full of pills at carefully timed intervals and
driving hours each day to her5-8 doctor's appointments each week. It snowed
here this week, just after I got on the 4 new studded snow tires to keep her safe
on these trips. (Next best thing to the 4-wheel-drive Subaru we had saved to buy
this year which is going to pay for all the above.) Ceal will go on getting chemo
every other week. It's all working, so why change it now? We'll continue to hope
and pray that the need or the price for chemotherapy (a little less than $5,000 a
session!) will drop before Ceal's one million dollar lifetime medical insurance cap
is reached. Perhaps we'll throw a few hopes and prayers and a little effort into
getting some reform in pharmaceutical pricing or maybe even universal health
coverage in the US. We'll continue to explore alternative therapies to
supplement or replace chemo. The photodynamic therapy in Ireland we told you
about last month is still a possibility but all the doctors are advising against
pursuing it right now. I've been researching PDT in the US and have been in
correspondence with some of the major researchers. There is an NIH stage one
trial just closing now involving a drug similar to the one in use in Ireland. That
clinical trial specifically treated liver metastases. We'll learn the results soon. It's
good to know that such work is being done closer to home and might get the
AMA/FDA/GMPC (giant multinational pharmaceutical cartel) imprimatur so as to
make it available through insurance plans to the likes of us. We are very thankful
to live in a land where such advances have been made in medicine and we are
thankful that we are covered by insurance so that we can afford them (at least for
a time). We'd just be so much more thankful if Bill and Hillary had played their
cards better and succeeded in getting it all nationalized 8 years ago.
We are truly thankful for your contributions to Ceal's healing--for each of your
thoughts, prayers and suggestions. Keep them coming. Keep yourselves strong
and healthy. Maybe it's just that we're much more keenly aware of cancer now
than before, but there seems to be so much more about. Within our memory, the
incidence of breast cancer in women has more than quadrupled. Two members
of our Friends meeting died in the last month: one after a 9-year battle with
kidney cancer and one quite suddenly from pneumonia resulting from treatment
for leukemia. Both were in their middle age. Please eat well and get medical
checkups and tests. Ceal's disease would have been caught at an early and
easily curable stage if we had been more proactive and aggressive in our worry 2
years ago. This Thanksgiving we are thankful for you and eager to keep you.
with love, Peter (& Ceal)
This is from Ceal: Get a life, right? We actually do others things besides medical
stuff. Pete's been brilliant for his run of "Delicate Balance"; goes into rehearsal
for "In the Blood" next week. I'm teaching at PLT and a local community college;
just directed a stage dreading at PLT and am currently directing a staged reading
in Philly. Jake is working backstage for "Del. Balance," but now wants a "real" job
AND has finally said he wants to learn to drive. Thanks, as always, for your
much-needed and appreciated (more than I can express) support.
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Heal Ceal! 8
Malvern, 12/21/02
Dear Family & Friends,
Good News!---no news.
All is pretty much as reported in the last month's message. Keep sending Ceal
your healing thoughts and prayers. They're working.
Shortest day of the year. We wait quietly in hope for the return of the light.
A Solstice verse from T. S. Elliott by way of our friend, Angie Foster.
"I said to my soul, be still, and wait without hope For hope would be hope for
the wrong thing; wait without love For love would be love of the wrong thing;
there is yet faith But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought: So the darkness shall
be the light, and the stillness the dancing."
This yuletide, be still dancing.
love, Peter (and Ceal)
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Heal Ceal! 9
Malvern, 02/16/03
Dear Friends and Family,
Ceal's healing. Whatever you're doing, keep it up. It's working. Keep thinking of
Ceal each day. Hold her in the light. See her strong. There is magic in
imMAGInation--imagine Ceal many years from now still serving this world as she
has done so well for so long. By doing so you will get here there.
Ceal is still in chemo, still in alternative therapies. She's made it back to the
weight she held before the disease started wasting her a little over a year ago.
She knows she was too thin even then and she means to put on at least 10 more
pounds of reserve strength. She's still jogging and walking a lot every day. At
every doctor's office, I hear medical folks saying, "I just can't believe how good
you look!"
She is teaching 2 acting classes at People's Light & Theatre and one at
Delaware County Community College. At DCCC she is also directing (and
producing) my translation of Moliere's "The Misanthrope" (for the equivalent of 2
additional classes). She's doing some coaching on the side. When the show
closes she's got another 2 classes at PLT in the spring session and will be
working beside the director of PLT's late spring extravaganza, "Once in a
Lifetime." It would be a mighty difficult schedule for her 10 years ago! But she's
pulling it off admirably.
She'll get a break in the middle of the semester. The last 2 weeks of March (her
spring break plus an extra week) we're going with my folks to Ireland and briefly
to London. We'll be mostly in the west and I'll do all the driving, so it should be
fairly restful for Ceal.
The Irish clinic I told you about a few months ago has recently stopped doing the
light therapy. They were absolutely overwhelmed by the demand and are now
training several residential clinics--mostly in Germany--to take over the treatment.
We'll probably stop at the clinic anyway and glean what we can.
Our friend, John, was recently back in Germany for a new treatment for his
pancreatic cancer. This uses a derivative of spider venom and has proven very
successful in tests in Germany. We'll check it out soon and hold both that and
the light therapy as good possibilities for the future. Please keep John in your
thoughts and prayers. This is a crucial period for him as we wait for the spider
venom to take effect. He is a gifted healer and we need to keep him with us.
We just shoveled off the first foot (30 cm) of an expected 2 feet (60cm!) of snow
outside. We hope that'll give us a jump and make it possible to clear the rest
tomorrow morning. Inside, the wood stove is keeping us very comfortable. Jake
just called from his girlfriend's house (where he's staying for a while!) to make
sure we're all right. We took some new folks from the theatre last night to have
dinner at Nok's restaurant. She looked great but was still recovering from the
huge crowd she served the day before (St. Valentine's Day--her 27th birthday).
We're glad to have those 2 kids and a whole world full of friends pulling Ceal
through.
love, Peter (& Ceal)
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Heal Ceal! 10
Malvern, 04/04/03
(Prologue- April 9, 2003: Our server has been inaccessible for several days.
Things have happened in the interim. Please note epilogue.)
Dear Family & Friends,
This was supposed to be the message in which I reported on our trip to Ireland.
Didn't happen. My father hurt his back in February. We all hoped for
improvement, but on March 12, 2 days before we were supposed to leave, it was
clear that it would be impossible. We got a quick flight to join them in Kansas
City for most of a week (which was the real point of the trip anyway). We plan to
reschedule for the end of the summer when we're all free and strong again. After
returning from KC we went up for a few days to visit Ceal's sister, Betty, and her
husband, Ted, at their lovely place near the beach in Falmouth, MA. Great trips,
both. Not quite Dingle on St. Patrick's Day as planned, but great.
Things were on an even keel here this Spring Equinox. Ceal continues to heal.
She was retested and rescanned in early March. CEA (blood tumor marker)
levels continue to fall. From a high after surgery in June of223 she fell to 65 in
mid-July, way down to a normal range of 1.6 in the fall, to a sub-normal 0.5 in
early March. The C/T scan shows no new disease and continued reduction in
the liver tumors. Of the original small ones (approximately 7, they're pretty hard
to count on a scan)several now seem to have disappeared. The two large ones
(and they started out pretty large—45mm x 48mm, about medium sized lemons)
are now10 x 14mm and 10 x 10mm (about medium peas) and smaller than some
of the little ones were when they were first scanned. She now weighs more than
she has any time in the last 5 years (and still means to keep growing).
Yesterday we spent well over half an hour with our friend and Doctor, Ira Cantor
(as his office schedule backed up), pouring over all three sets of scans—
following the steady decrease in the tumor load. Ira said that he really couldn't
remember seeing Ceal look this good in many years. Considering the starting
point last June, he said he couldn't have imagined a better result at this stage.
Later in the day at the Oncologist's office, Michel Hoessly beamed over the
reports saying several times: "Well, I'm pleased. I'm really very pleased."
Both doctors agreed things were working so well that we should make no major
changes in treatment now. We'll again check out the possibility of RadioFrequency Ablation. This is a minimally invasive outpatient procedure, usually
done under sedation, in which a probe with a transmitter is inserted directly into
the two largest liver tumors and they are baked with low-heat radio waves until
they die. Ceal was not accepted for this procedure earlier because of the
number of tumors on the scans. It's possible that, with the reduced number and
the rapid reduction in the size of the others, they might consider her at this time.
We'll make some contact with the folks in Germany who are now doing the light
therapy that started in Ireland (reported on several times earlier). But we are not
planning any immediate changes.
Healing is hard work. Ceal's back in chemo (after a 3-week break for the
proposed trip). She's still doing her wide variety of complementary and
alternative treatments--seeing doctors between 3 and 8 times every week. She
continues to feel that her healing meditations (and your contributions to them) are
vital to her success. She meditates between one half and one hour every day.
I’ve sat with her a few times and it is some of the most strenuous stillness I’ve
ever experienced. Keep helping her out. Spend a little time with her each day.
Keep sending healing her way. She’ll focus it and put it to work.
Love, Peter (& Ceal)
From Ceal: We’re busy with work (teaching, some directing for me; acting for
Peter) and with war protests. Our best wishes for peace in your lives.
(Epilogue—April 9, 2003: Our friend, John Foster, MD, died Monday morning at
2:15. A little less than a year ago he was diagnosed with pancreatic cancer and
was given less than 6 months. We shared much information and support over
this time and feel his loss strongly. John was a comfort and an inspiration to
many—as a gifted healer and as one striving to heal. His spirit continues to work
powerfully with us and many others. Please hold him and his wife, Angie, and
children Reed, Deshka and Lhotse in the light.)
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Heal Ceal! 11
Malvern, 06/04/03--Anniversaries
Dear Family and Friends,
Our little Japanese holly bush is thriving and that’s an amazing thing. It’s less
than half the size it was when we bought it on May 13th a year ago for our 30th
anniversary, but then it’s been through a lot this year. It suffered through a
summer of drought and neglect while we had our minds otherwise engaged and
then through a winter of heavy snows and harsh, cold winds. But this spring we
trimmed it to the quick and fed it and hoped for the best. Now, on the 4th of
June, it’s shiny and bright and covered with pale green new leaves. It’s been a
difficult year and a year of growth for all of us here. I just read over what I wrote
to this list on June 4th a year ago (as many of you as I had email addresses for—
our computer had just crashed and I was trying to rebuild the address book). I’ll
paste it here rather than try to describe it:
Notes on Ceal’s Recovery II
Malvern, June 4, 2002
Dear Friends and Family, Ceal's recovery began this morning. I am sorry to tell
you that it will, at best, be long and very difficult. Without your concentrated
prayers and healing thoughts, it could in fact be in doubt. The surgeon removed
the affected section of the sigmoid colon (the lower end, after the transverse
section). Ceal's tumor was about 20 cm up the colon, so no colostomy bag was
needed. He found that the tumor had penetrated the outer wall of the bowel and
there was evidence of cancer in the lymph nodes close by (some of which he
removed with the section). There was also evidence of some in the liver, though
he could not tell to what extent. This is definitively not good news. It is classified
as Stage D colon cancer. We will find out from the pathology report and from a
CAT scan which will be performed in a few days the extent of the involvement in
the liver. Ceal will unquestionably undergo an aggressive phase of
chemotherapy. Perhaps several. 5-year survival rates are low for Stage D, but it
is not hopeless. This is where you come in. I'm still learning a lot about this, so
some of what I have to say here may sound naive. It will probably take a miracle
for Ceal to be "cured." But I think she is ready to fight, and that is a miracle in
itself. Ceal has always sworn that she would never entertain the thought of
chemo. I think that she has been convinced, for the sake of her family and her
friends, to do what she needs to do to get through and stay with them. For the
last week before the operation she has been laying in eggs and fish and even
drank chicken broth(!) the whole day she was on a liquids only preparation diet.
She's over in her hospital bed at this moment, morphined out of her mind, but still
making the nurses teach her the inhalation therapy and foot exercises she will
need to recover as soon as possible from the surgery to be strong for the next
step. And she is said to be recovering quickly from surgery. So a miracle is
needed. This morning a circle of Quakers from our Meeting met in the Maternity
waiting room (as the chapel was being renovated) during surgery. All through
the theatre, prayer groups are forming for Ceal. Incense in burning on Buddhist
altars in NYC and elsewhere. Our friends from Cyprus who are associated with a
worldwide ministry are putting it into full swing. This is what we can do right now
to save Ceal. Pray and pray hard. If prayer is not easy to you, do what Ceal
sometimes does for others when no words come: send a healing energy her way
in the form of a positive vision of her. Ceal loves her work, she loves to garden,
she loves her family, she loves to take long fast walks. Picture her confidently
doing those things. A few weeks ago we ordered her a lovely new Land's End
"Tankini" swim suit (turquoise- if you want to check it out in the catalog or on the
web site). Ceal loves to splash and float in gentle surf. When I'm at a loss for
what to say next, I see her in that suit floating in the Mediterranean and send that
vision her way. Help me, please, get here there for real. Calls are still tough for
me to handle and impossible for Ceal. The theatre (610) 647-1900 has reports.
She will recover from surgery in Paoli Memorial Hospital, rm. 208 for another 4
days and then will be at home. Jake brought her books and flowers today. With
love and with hope, Peter
That night the doctors told me that Ceal had 1-3 years at best. And they may yet
be right. But we know, at least, that they’re wrong about the short end of that
projection. Ceal ran this morning for an hour in the rain. I can beat her over a
short distance, but I can’t keep up with her over time. I need to stop and walk
every now and then. Ceal just puts her head down and goes. She’s pretty well
smashed the odds the doctors have given her so far; and so we go on — nibbled
at by worry, but filled with hope. When she came out of surgery last June 4th,
Ceal was already substantially underweight. She proceeded to lose another 15
pounds by the end of July. She’s now got all that back and is 10 pounds stronger
than she was a year ago. If we can’t afford to get her to the Mediterranean yet,
at least she can finally fill that new swimming suit in preparation for the trip. She
has kept up a very full schedule of teaching and directing over the last 6 months
while maintaining her grueling regimen of bi-weekly chemotherapy and her
multitude of alternative therapies. She’s now enjoying a few weeks of time off —
catching up and preparing for the Theatre’s teen program in July. She’ll be
teaching again at the college in the fall and is cast in a Dec.-Feb. show at our
theatre. As I’ve reported, Ceal’s blood enzyme levels, which mark the progress of
the tumors, have dropped steadily over the year from more than 150 times
normal to a current sub-normal level. Each C/T scan shows a marked decrease
in the number and mass of the tumors. This Friday she has an appointment with
a surgeon who performs Radiofrequency Tumor Ablation. Ceal was turned down
for this very effective and minimally invasive procedure last July because of the
number of her lesions. She’s got a good chance of getting in this year. We’ll let
you know. The 13th of May was quiet this year. We celebrated our 31st
anniversary with breakfast out at the diner and a trip to the garden center for
tomato plants and a bag of Hollytone fertilizer for that indomitable Japanese holly
bush. It was a rare dry day in this damp spring. (Our daily walks are usually
under umbrellas.) Ceal gave me an anniversary postcard with a print of an Ando
Hiroshige woodblock from 1857 titled: “Sudden Shower at Atake.” It shows 6
figures bent to the rain, crossing a bridge as another poles a raft below them.
She inscribed it with 3 lines. Writers of English prose often ask editors to check
them for inadvertent blank verse—but inadvertent Haiku? Ceal swears she didn’t
intend it (and she did miss by a little: it’s a syllable short - 5-5-6 instead of 5-7-5):
“What care we for rain?
We cross those bridges—
Put our heads down and go!"
Your thoughts and prayers have helped us greatly this year as we crossed those
bridges. We both thank you for being with us. Keep sending healing Ceal’s
way. Help her to cross many more. With love and hope, Peter (& Ceal)
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Heal Ceal! 12
Malvern 9/19/03
Myths & Visions
Dear Family & Friends, They say the age of miracles has passed. I suppose
they say the same of myths and visions. I have some, though, to recount. I’m
beginning this message in the surgical waiting room of the Thomas Jefferson
University Hospital in downtown Philadelphia where Ceal is at this moment
undergoing Radio Frequency Ablation. I’ll probably finish it tonight or tomorrow
when we get her back home.
Sorry to have taken so long since the last message. We wanted something
concrete to report and, once we got it, there was no time to write. This is
practically my first day off since we returned from our trip to Ireland with my folks
in late August (great trip, by the way). I’m doing two shows at once: a one-manshow downtown and a weekday morning show for high school students at
People’s Light (our home theatre).Ceal is taking a few days off for this procedure
from her schedule of teaching for the theatre and the college and getting ready to
direct again at the college.
So— Radio Frequency Ablation (RFA, RITA, etc): This is a new procedure used
to destroy solid tumors in a relatively non-invasive way. It was considered
experimental until a few years ago and still only a few teams in the country do it.
We have some of the best. As I told you last time, Ceal was turned down for
RFA a year ago. It was thought then that it would be pointless given the large
number and size of her liver tumors. This year she was accepted for evaluation
and when we went in, the doctor told her that, after reviewing the scans, he
thought her "an excellent candidate for burning”… if she needed it at all. He
thought that the few remaining small dots on the scans might be scar tissue. He
ordered PET scans, MRI’s and ultra-sounds and ultimately determined that there
were three tiny lesions—two of which might already be dead—and that they’d
burn all three of them.
So that’s what’s going on as I write this. Ceal is out under general anesthesia.
The procedure is done mostly by the Radiologist (a world-renowned doctor who,
when he introduced himself asked if it was OK to call her Ceal—he’d seen her on
stage so often he felt like he knew her.) The world-renowned surgeon is
evidently there only in case of complications. Guided by ultra-sound, Dr.
Needleman (yes, that’s his name) inserts a needle through the skin of the
abdomen into the liver and then into the tumor. RF energy is transmitted and the
tumor is cooked at about 120-140 degrees F. until it is dead along with a margin
of healthy tissue around it. We were talking about it with our GP the other day,
assessing the likelihood of success and he said: “How’s it not going to work? I
mean, they’re going in there with a howitzer. “Recovery is supposed to be fairly
quick except for about six weeks of low-grade fever caused by the liver removing
the dead tissue that remains. Here’s a link where you can learn a little more
about it:
http://www.mayoclinic.org/rfatumortreat-rst/index.html
Now on to myths and visions:
VISION:
Over a year ago—7/25/02— Ceal was had been out of the hospital only for three
days. She was in for neutropenia— the chemo had wiped out her immune
system and the cancer had wasted her down to about 80 pounds. We concluded
recently that she was exhibiting symptoms of advanced starvation and it was only
her years as a marathoner that left her strong enough to avoid heart failure. We
were, at that time, both taking a small dose of a sleeping aid (which I later
discovered had “mild hallucination” as one of its potential side-effects.) The night
before, Ceal woke me up to ask if I had just been hovering over her breathing in
her face. (I had not, by the way!) In the morning she told me that she had been
awakened by something like a dragon breathing on her. In the middle of the next
night I looked over to check up on her. In the dim light I saw her features
hideously exaggerated and contorted: nose elongated, long fangs bared. Then I
could see that it wasn’t her face at all, but another face emerging from hers as if
rising out of her mouth: a vulpine snout, fangs, wild eyes, scaly skin, catfish-like
tendril/whiskers flowing away from the chin. It seemed to be emerging with great
reluctance and in great pain. The face was followed by a very long neck or body
that grew thinner and less substantial until it reached the ceiling of the room nine
feet away. It looked back at Ceal in anguish and, as I moved my hand over her
face and severed its connection to her, it let out a silent cry, exploded and
vanished soundlessly.
>From that moment on, through many difficult stages, Ceal has steadily
improved. By the end of our trip to Ireland, she had been off chemo for four
weeks and it had pretty well cleared from her system. She said that she felt
better than she had in five years or more.
When it was clear in July that she would be getting the RFA. We had a rather
extraordinary meeting with her delighted oncologist. He said that she was
presenting a very interesting and difficult problem: there is very little precedent
for someone with stage IV metastatic colon cancer going disease-free. He’d
have to consult with colleagues. He was rather pleased to say: “I’m not really
sure what to do with you.”
MYTH:
Myths, I’ve found, are cute or scary or encouraging stories until you yourself live
through the piece of life they were meant universally to illuminate. We’ve been
through a bunch over the last year and a half. Late last Spring, a teen group at
our theatre did an adaptation of several of the myths from Ovid’s Metamorphosis.
One of them spoke strongly to my condition and I pass it on to you:
Jupiter and Mercury are traveling in ragged disguise and are shunned and turned
from a thousand doors. They come to the poor cottage of Philemon and Baucis,
an old and loving couple who married young and have lived a difficult, but long
and happy life together. The disguised travelers are given a warm but meager
welcome—the best the couple can provide. The gods in gratitude, reveal
themselves, turn the hut into a beautiful marble temple and say:
“You are good people, worthy of each other, Good man, good wife--ask us for
any favor, And you shall have it.' And they hesitated, Asked, 'Could we talk it
over, just a little?' And talked together, apart, and then Philemon spoke for them
both: 'What we would like to be is to be priests of yours, and guard the temple,
And since we have spent our happy years together, may one hour take us both
away; let neither outlive the other, that I may never see the burial of my wife, nor
she perform that office for me.' And the prayer was granted. As long as life was
given, they watched the temple, and one day, as they stood before the portals,
both very old, talking the old days over, each saw the other put forth leaves,
Philemon watched Baucis changing, Baucis watched Philemon, and as the
foliage spread, they still had time to say 'Farewell, my dear!' and the bark closed
over sealing their mouths.”
You can read the full story in translation at this
link:http://dlib.stanford.edu:6520/cgi-bin/hugo
It’s the evening now of Saturday, the 20th. Ceal is home. They decided to keep
her overnight as her procedure was late in the day. Even this morning she was a
little nauseous from the anesthesia. We had a long conversation with Dr.
Needleman, the radiologist, yesterday evening. He said it went very well. The
one small lesion that had showed metabolic activity on the scans had grown
slightly since the last scan. That one he treated “very aggressively” – three times
from two different directions. He aggressively treated another small lesion that
showed no sign of malignancy before he started. The final one, the smallest, he
decided to leave untreated. It is near a blood vessel, which makes treatment
much more dangerous and less likely to succeed. He said that there was
virtually no sign that it was anything but scar tissue and he felt very confident
leaving it untreated.
So, AT THIS MOMENT, as far as any of the experts can tell, Ceal is free of any
MEASURABLE disease. I emphasize “measurable” because it takes about a
million cancer cells to make up a mass the size of a pencil dot, and a lot more
than that to make up something that will show up on a C/T scan. I emphasize “at
this moment” because of the dozens of caveats that they add. If the original
colon surgery was poorly done, there could be local recurrence at that site (very
unlikely). Ceal is obviously prone to developing colon polyps but now will be
checked with regularity and have them removed before they become malignant.
Of the patients treated with RFA: 1/3 have recurrence of liver tumors; 1/3develop
metastases in other areas and 1/3 have no recurrence of active disease
whatever. He won’t use the word cured, but rather controlled, because no one
yet seems to feel that “cure” can apply to this disease. A year ago we were
hoping to get into a 2% group of survivors. These odds sound a bit better. He
said that RFA could be repeated in the liver and in some other areas as often as
needed. There are many other therapies available should disease recur. He
said: “With you, we’re just at the beginning of our means of controlling this
disease—we’re nowhere near the end.” Ceal will be OFF CHEMO!!! for an
indefinite period of time. She’ll be scanned and monitored for any change in the
blood tumor marker. She’ll continue with most of her alternative therapies. She
returns to the stage in January! We’re working together in an adaptation of
“Holes” for People’s Light with our son Jake also in the cast.
So, I’ll be writing fewer times in the year (and, one would hope, shorter
messages). Our great thanks, once again to each of you for your participation in
Ceal’s healing. Every note or prayer, every pause in your day to think of her has
brought her closer to this. But keep it up! From now on, my prayer will be “AT
THIS MOMENT keep Ceal well and strong and happy.” “…and at THIS moment,
too!… and this one… and this…” Keep that dragon floating, bodiless and
homeless. Help this already crotchety couple grow older still… together. And, if
our hut never turns to a marble palace, maybe we’ll be able to spend a week in
one sometime thanks to sneaky Saskia and her mad-Med schemers. Thanks to
you all.
With love, Peter (& Ceal)
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“HealCeal Yet again”
Malvern, Sometime early in 2004
Hi, Everyone—
Hope you’re well and staying warm. We’re spending the winter creeping from
heat source to heat source and fighting the overwhelming desire to hibernate.
I’d like to ask you again for your prayers and positive energy. My latest scans
show a recurrence of cancerous tumors in my liver. Luckily, they’re at present
small and not too numerous, so I’m scheduled to have another radio-frequencyablation procedure at the end of the month. I may then have to go back into
chemo, using a new protocol. My oncologist expresses frustration rather than
alarm.
Meanwhile, we’re nearing the end of our run of HOLES at People’s Light—Jake
is doing a terrific job as one of the Bad Boys.
Thanks for your continued concern. Please keep Peter in mind, especially—I
believe it’s harder on the caregiver than on the care-ee.
Love, Ceal (& Peter)
Peter adds:
The two small active lesions seem to have developed from microscopic leftovers
from the last burning in September. Nothing new, we think. The radiologist
concurs and considers it no big deal. Everyone seems to think that, with these
pockets of survivors from the last procedure and no chemo for 5+ months, Ceal
is doing very well, indeed, to have just this little recurrence.
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Heal Ceal 13
Malvern, Early March, 2004
Dear Family & Friends,
The radiologist and surgeon who did the work on Ceal on 26 Feb. are extremely
pleased with the outcome. But it's been a hard recovery. We would like to have
written earlier, but keep hoping that if we wait 'til tomorrow we can say Ceal is "all
better." That'll be several tomorrows more.
She had three different procedures back-to-back and was in the operating room
from 1:10 'til after 5:00. The radiologist, we think, was not pleased that there was
recurrence and treated her aggressively and at length. He came back to talk to
us that evening and said that "It went better than I had any right to expect it
would." He feels quite confident that the stuff is at least as dead and probably a
lot deader than after the last burning. We got the idea that he was trying to make
sure it would be a very long time before we needed his services again. We told
him that we sleep easier knowing he's there to do this work for Ceal.
So, recovering from these three procedures (radiofrequency ablation, removal of
a non-functioning medi-port and placement of a new one) has been rough. She
had fevers over 101 for several days together with a lot of pain. As the pain
started to lessen, Ceal became quite keenly aware of her growing peripheral
neuropathy (PN). This started a few weeks before as a side effect of a
medication that she has recently stopped taking. Evidently PN has a "coasting
phenomenon" and continues getting worse for a while (after the offending
medication is stopped) before it starts improving. It is now her greatest difficulty
and it's truly a big problem. We're working on several tracks to try to get control
of it and hope that it quits its coasting soon.
Meanwhile, we're looking at various possibilities for follow-up to the
radiofrequency burning procedure. A return to chemotherapy is possible but not
likely. She'll stay on her huge battery of naturopathic therapies. We liked one
suggestion of the surgeon at the follow-up visit this week. He said that in cases
like Ceal's, where the disease seems to be confined to the liver and is under
pretty tight control, they tend to treat it like arthritis: when if flares up, knock it
back down. He feels we could go on for many years like that.
Here's a link with very good information on radiofrequency ablation if you're
interested:
http://www.radiologyinfo.org/content/interventional/rf_ablation.htm
Ceal is hard to slow down. A little over a week after getting home she was
teaching a new class at our theatre. She just finished a week's residency
teaching for the theatre at a local high school. In May she'll travel to Chicago to
rehearse for 2 weeks with the Lookingglass Theatre on a revival of their awardwinnig production of "Hard Times" which is being brought into a theatre in
Philadelphia. We're reviving for the summer the extremely successful production
of "Holes" in which Ceal, our son Jake and I appeared. She'll also be directing
the advanced teen program at the theatre while that show is running.
Please keep Ceal in your thoughts and prayers. They keep us both going.
love,
Peter (& Ceal)
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Heal Ceal! 14: Surviving
Malvern, 06/04/04
Well, we're two years out and, at this moment, still free of measurable disease.
That, in itself, is quite an accomplishment based on the prognosis I was getting in
Paoli Hospital's surgical waiting room two years ago today.
The scans are back following up on the second radiofrequency burning
procedure in February and everything looks great. So we're hopeful that the
second burning was much more successful and could last a lot longer. Many of
the doctors say it's possible that there will be no recurrence at all. Ceal's still off
chemo. She's still on most of the alternative treatments. She'll be rescanned in
early August. And we'll go from there. We live in hope.
The peripheral neuropathy that I wrote about in the last message is still an issue.
In fact a pretty big one. It's not a reaction to one of her medications as we first
thought. We keep exploring causes and possible treatments. The radiologist who
did the radiofrequency burning said: "Oh, yeah. I've got that too. They told me it
could be caused by a million different things, some of them fatal, but I'm still
alive, so you deal, right?"
She deals. Ceal opened this week in downtown Philly at the Arden Theatre in a
production of Dickens's "Hard Times." She's got a small role in a revival of an
award winning show by the Lookingglass Theatre of Chicago. It's a wonderful
production, very well reviewed and received here and she's pleased and proud to
be a part of it. Ceal was out in Chicago for the first two weeks of rehearsal in
early May. It's the first time we've been apart for more than a few days for these
two years. We got CELL PHONES!!
So, we're two years out. Another 12 months and Ceal will have exceeded the
longest expectancy of the one to three years that she was given on June 4,
2002.I don't guess, until we hit that mark, that we can really call her a survivor.
But that's certainly how we are beginning to feel. One must be careful not to
boast while the gods are listening (as the Greeks say). And we've learned over
the last two years that the gods are listening most of the time and behind nearly
every corner. And it's not a boast, I think, nor is it a matter of luck.
SUR VIVE: live over, live beyond, live above, outlive, live in spite of. LIVE, in any
event. And live in a different way than one did before. There are so many things
we've been learning over the last two years. Health isn't just the lack of illness.
Healing isn't cure. Surviving cancer isn't like getting all better after a cold or the
measles. If we ever do write the book that so many of you have encouraged us to
write, there will surely be a chapter or two on Surviving. We were talking to our
GP the other day about it. As cancer affects so many more people these days
(and it does in amazingly increasing percentages) and as treatments that can
control but not cure it become more available (and they are, slowly, but surely),
there is a growing new demographic. Survivors have been reshaped by the
disease and the treatments--physically, emotionally, socially and spiritually. And,
while they live their new-made lives--above, over, beyond, in spite of--the
disease, the disease also lives--above, in spite of, within--them. It depends over
their survival like the sword over Damocles. It's a presence from treatment to
follow-up scan to unexpected side effect. We can understand how many would
choose not to take on the considerable job of living in spite of something that
goes on living in spite of them.
So, two years out, survival isn't a boast or a matter of luck. It is a matter of
knowing that the gods are listening; and a matter of doing your best to listen to
them in return. Ceal still meditates every day and is working very hard to get me
to start doing so on a more regular basis. It is a matter of wanting to spite the
disease and being proactive in doing so. It's a matter of finding excellent healers
and listening to them and pushing them. It's hard and constant work. It's also a
matter of resting sometimes in the healing love of your friends and your family.
We're both so thankful for each of your part in this journey.
Love, Peter (& Ceal)
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Heal Ceal! 15
Malvern 03/14/05
Dear Friends and Family,
We ask again that you take a few moments to hold Ceal in the light.
On March 17, she is having the residual tumor in her liver cryo-ablated. This is
the same rascal left untreated in the first burning and which survived in
microscopic form after the second burning. They've tried boiling it, but it sits just
over a major vein which cools the needle. They then tried destroying it with an
injection of pure alcohol, which didn't take as it wouldn't absorb enough. Now
they're going to try to freeze it to death. They have great hopes. They will
probably keep her Thursday night for observation, but may send her home the
same day. We'll have follow up scans in about a month, so won't know anything
for sure til then.
If you have room, hold a few friends in the light as well. Jan in Indiana in
treatment for leukemia and Nancy in Springfield, PA, in treatment for esophogeal
cancer. The list grows. Take care of yourselves.
love, Peter & Ceal
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Heal Ceal! 16
Malvern, 08/17/05
Dear Friends and Family,
It's been awhile since I wrote and that's how we like it. June 4th of this year was
pretty uneventful. We were in the first day of our 2-day drive with a yowling cat
back to Malvern from visiting my folks in Kansas City. 3 years ago on June 4th,
Ceal had the primary tumor removed from her colon and we were told that she
had 1-3 years. A few days later, friends gave us a string of brightly colored
Tibetan "long life" prayer flags which we strung over our yard. They and a lot of
excellent health professional and your thoughts and prayers have worked pretty
well.
The cryo-ablation procedure Ceal had performed on her last remaining (visible)
tumor in March seems to have been very effective. Scans in April and again at
the end of July were a bit confusing and show a tiny area that may still be active,
but the radiologist seems to feel that it is not of great concern. Her blood tumor
marker levels are dropping, showing a lowering of tumor activity. She is now well
into the normal range.
We've had a summer full of work and now some fun and travel. Ceal directed a
one-act and acted in 2 others and I was in
3 in our summer festival "30 Fest." (It's our theatre's 30th anniversary.)
When Ceal was first sick, we wondered if we'd ever get back to our favorite
campground, Pine Grove Furnace State Park - just north of Gettysburg. Ceal
would do a healing meditation visualizing herself hiking with vigor up the steep
sections of the Appalachian Trail that wind through that park in her blue "power
shirt" - a ratty blue t-shirt she favors for such hikes. After the shows closed, we
spent a week there. We're both a little slower and more careful than the last
time, but not by much. We camped at the beach in southern Delaware while
there for a friend's wedding. Tomorrow we're off for a week in Cape Cod with
Ceal's family. The first week of September, we're in KC again to see my folks.
We're extremely lucky and extremely thankful. We've got each other. We've got
great friends and families. We've got great doctors. We're achieving the
perspective to appreciate them. Thanks.
Not a lot of words this time, so I've included a link to a few pictures from the
summer here:
(NB: This link is no longer active.)
http://pg.photos.yahoo.com/ph/peterdelaurier/album?.dir=mail&.src=ph&store=&p
rodid=&.done=http%3a//pg.photos.yahoo.com/ph/peterdelaurier/my_photos
<http://pg.photos.yahoo.com/ph/peterdelaurier/album?.dir=mail&.src=ph&store=&
prodid=&.done=http%3a//pg.photos.yahoo.com/ph/peterdelaurier/my_photos>
You'll find:
Prayer Flags flying over our yard.
Ceal in "The Cuban Swimmer."
Ceal in "How We Talk in South Boston."
Both of us in "How We Talk..."
Ceal on top a mountain.
We both hope you're well.
with love, Peter (& Ceal)
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Heal Ceal! 17
Malvern, 09/11/05
Dear Family and Friends,
Too soon to be good news, right? But it's not so bad. I said in the last message
that there was confusion in reading the scans from 25 July. That confusion has
finally been cleared up by our radiologist with the determination (backed by blood
test results) that a small residual liver tumor has started to grow. That's the bad
news. All else is good: It's not the very-difficult-to-attack tumor adjacent to the
major vein that they've been going after in the last 2 tries. That one's dead. And
it's not new material, it's an expansion of a microscopic remnant of a previously
treated lesion.
So, Ceal will be having another radio-frequency burning procedure on that area
this Friday morning (9/16) at Jefferson. It will be done under local anaesthesia
and sedation rather than general, so she should be discharged the same day and
her recovery will be much quicker. Please think of her on Friday.
Our experience with this team leads us to anticipate a good outcome and few
complications, so I don't plan to write for some time after. I'll be in touch with
better news in a few months.
with love, Peter (& Ceal)
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Heal Ceal! 18
Malvern, 12/05/05
Dear Friends & Family,
We have received a few gifts in the form of faxes this holiday season that we
pass on to you. As I wrote in early September, Ceal had another radiofrequency
ablation procedure on a residual tumor in her liver. The recent scan results are
clear and blood tests are in the normal range. So, once again, Ceal is, at this
time, at this time clear of measurable disease. We are thankful for this and for
your thoughts and prayers.
Be well this holiday season. Celebrate the return of the light. Please hold in the
light our friends Jan (healing from Leukemia in Indianapolis) and Scott (working
to heal from advanced lymphoma in Seattle).
love, Peter (& Ceal)
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Heal Ceal! 19
Malvern, 06/04/06
Dear Friends & Family,
Another June 4 passes uneventfully. Four years ago Ceal was operated on for
Stage IV Metastatic Colon Cancer. We continue writing (now much less
frequently) to let you know she's still dealing with it, much better than anyone
could have expected back in 2002. We got another spring together and it's been
a great one. We got another couple of shows together already this year. The
Crucible closed recently and we played Man From Nebraska twice today. We're
some pretty lucky folks.
Ceal had scans and blood work a few weeks ago and meetings and calls with
doctors last week. They all confirm that there is no change from the previous
scans: no measurable disease at this point in time.
In the past few years, we would have expected the ablation procedure in Sept,
05 to have allowed some questionable areas by the Nov. follow up scans, and
those areas to have been confirmed as residual tumor in January. We would
have scheduled another ablation by March and be looking at the follow up scans
from that by now. Not this time.
Dr. Needleman (who does the ablations) was determined not to leave a chance
for anything to remain alive anywhere near the treated area last Sept. He
worked her over pretty good. At one point, over an hour into the procedure, she
stopped breathing on the table and he had to call the code on her. I was sitting
in the hall about 30 feet from the procedure room. It was pretty weird to see
these 20 grim, determined people rushing past me with all sorts of impressive
equipment towards her door. She had revived by the time they got there. At any
rate. Dr. Needleman did the job. There has been no sign of residual or recurrent
disease for three sets of follow ups now. Ceal's Oncologist and the surgeon
following her case at Jefferson U. Hospital have cut her loose for an extra
month. We're now on 4 month rather than 3 month rescans.
So, all good news. Ceal's got a pretty good season coming up. She is, among
other things, directing two shows for regional theatres in our area and playing
Marilla in my adaptation of Anne of Green Gables at our home theatre, People's
Light.
As I said, we'll keep writing updates infrequently. Please continue holding Ceal
in the light. We have been blessed by your concern and support over these
years.
love, Peter (& Ceal)
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Heal Ceal! 20
Malvern 10/01/06
Dear Family & Friends,
I had hoped to be writing a message about how we'd made it a whole year with
no measurable disease. We didn't quite. Scan reports in mid-September
showed two small tumors, both still in the liver. One is the old friend-- now three
times ablated-- nestled among blood vessels near the inferior venacava and
there is a new one that may be residual from some long dead lesion or MAY be
new material.
The radiologist who has performed all the ablation procedures says they're both
treatable and Ceal will have a radiofrequency ablation procedure as an outpatient on Wed., 10/4. He says that both are probably old disease. But, on the
chance that the new one is actually new, all of us have concluded that Ceal will
have to go back on systemic chemotherapy, at least for a short time.
The new chemo regimen is said to be much more effective and easily tolerated
than the one that she was on 4 years ago. It has additional side effects, but we
live in hope that she will be on for a short enough time that they will not be a
large problem.
A show Ceal directed just opened at a local regional theatre. She starts, just
after her procedure, directing a show for our theatre school. We'll both be acting
in my adaptation of Anne of Green Gables in Dec. / Jan. / Feb. None of these
activities is expected to be adversely affected by these procedures.
We hope you're well, healthy and active. The mid-term elections are coming fast
and Ceal is working hard for 4 candidates in our area. We're definitely
underdogs in this affluent community but, right now, all four of our candidates are
polling ahead.
We ask for your good thoughts and prayers on Wednesday, and for Ceal as she
re-enters the world of chemo. It's been 3 years since she's been there.
Peter (& Ceal)
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Heal Ceal! 21
Malvern, 06/04/07
Dear Friends & Family,
June 4, 2007! Who would have thought we'd still be at this? 5 years ago Ceal
was operated on and diagnosed with stage 4 metastatic colon cancer. A few
days later, we visited an oncologist who sat across his desk and barely endured
our urgent suggestions of alternative treatments. He said that her treatment was
his job (and basically we were not to question it). Her job was "just to stay alive
until we find a cure for this." That, by the way, was a job he certainly couldn't
imagine her being able to accomplish and one at which, if we had let him take
charge of her treatment, she would have no chance.
5 years. It's supposed to be some kind of magic number. "You've made it this
far, so you must be in the clear." It's not quite so. It's just another June 4th (and
that, in itself, is something). This has been a hard year. Ceal's recurrence in
September was quite aggressive. The two new tumors in her liver were pretty
thoroughly burned out by the radiology team and she went on a 6-month course
of chemotherapy. That course stretched to more than 7 months because of
treatment delays to allow her to recover from some pretty severe side effects.
Her doses had to be lowered several times to reduce the toxicity and finally, her
chemo regimen had to be changed because the new protocol was too toxic for
her to take. During all this, Ceal kept working -- playing Marilla beautifully in my
adaptation of Anne of Green Gables, directing The Taming of the Shrew and The
Three Sisters. She wore her portable chemo pump under her costume for dress
rehearsals and performances. Finally, we negotiated an end to her course in late
April. Her blood work shows no sign of active disease at this moment. We
expect her recent scans to show the same.
Our oncologist sees a period of ease, a recurrence, more chemo, reduction in
disease, another break, another recurrence, more chemo, etc., etc. That's the
way it typically goes -- until it doesn't go anymore. We don't like that scenario
and so we've been doing a lot of reading and a lot of negotiating to find
something better.
Modern clinical oncology (largely funded by research money from the big drug
companies) is based on the principle of MTD -- Maximum Tolerated Dose
(usually of the most expensive new chemo drug). Cytotoxins (cell killers) are
administered at a level that kills as many tumor cells as possible and at the same
time, as collateral damage, kills an enormous amount of good, rapidly dividing,
cells: mucous and digestive tract lining, hair, bone marrow, etc. The bad stuff is
beat down as long as the patient can stand the damage to the good stuff and
then treatment is stopped to allow the body to recover. However, the disease is
opportunistic and will, typically, recover faster than the rest of the body and
learns to build immunity to the cytotoxins. Over time, the massive doses of
caustic drugs break down the overall health of the patient and eventually become
ineffective.
A lot of people have felt that there's got to be a better way. Much research has
been done on therapies not necessarily designed to kill the tumor, but to prohibit
the disease from forming the blood supply without which tumors can't grow.
We've been following the research of teams in Boston and Toronto who are
doing work in Low Dose Metronomic (timed-dose) chemotherapy. Doses of
cytotoxins and other drugs that prohibit the growth of blood vessels are given at
levels low enough that there are said to be no measurable side effects. The
therapy is constant because there is no need for a chemo vacation to let the
body (and the disease) recover. This therapy is still in clinical trials and it has
been a lengthy process of negotiation to get our oncologist to go along, but we're
ready. Today, we've got all the prescriptions in hand and the new way of treating
this disease and keeping it chronic ('til that elusive cure is found) begins.
Five years ago good friends gave us a string of Tibetan Buddhist prayer flags for
long life. Every flap in the breeze, every thread sent adrift is a prayer. We sent a
link to a picture of them a year ago. They were a little worse for wear by this May
-- a lot of prayers sent into the cosmos. So we've renewed them with three long
strings: new prayers for a new way for another five years -- during which time
we'll be looking for yet another way.
We think of you and hope you're well. Think of Ceal. We sometimes feel that you
-- individuals in Ceal's far-flung network of well-wishers -- are a little like those
prayer flags. Every time a zephyr of a thought of Ceal hits someone,
somewhere, healing comes her way. Keep it coming.
With love,
Peter (& Ceal)
Here are a few links:
Photos of: The prayer flags a year ago; What was left of them in May; and The
new prayer flags today. Also Photos of Ceal and Me (with our friend, Erin) in
Anne of Green Gables and in The Crucible:
http://pg.photos.yahoo.com/ph/peterdelaurier/album?.dir=7f86re2&.src=ph&store
=&prodid=&.done=http%3a//photos.yahoo.com/ph//my_photos
(NB: This link is no longer active.)
An article on Low Dose Chemotherapy citing some of the researchers we've
been following:
http://jnci.oxfordjournals.org/cgi/content/full/94/2/82
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Heal Ceal! 22
Malvern, June 4, 2008
Dear Family & Friends,
It's another June 4 - now the 6th anniversary of Ceal's diagnosis of Stage IV
metastatic colon cancer. It's been a year since I last wrote and a lot has
happened. I'll fill you in briefly.
First, Ceal feels great and has no measurable disease on the most recent scans.
When I last wrote, she had just finished 9 months of big guns chemo following a
recurrence in late 2006. We were starting a protocol of constant, metronomic,
low-dose oral chemo that was intended to keep the disease at bay while not
producing any noticeable side-effects. That protocol was in pediatric clinical trial
in Boston and we got it from the doctors there and adapted it for Ceal.
We did weekly blood tests and adjusted the dose to keep the blood tumor marker
down and the red and white blood counts up. It was an intricate dance and it
worked pretty much as intended for 7-8 months. At that point the tumor marker
started rising as the blood counts fell, so it was clear we would have to try
something else.
We got in touch with a major international researcher in North Carolina who tried
to help us (from a distance - by email and phone) put into practice a low dose
protocol. This one uses a portable IV pump which is programmed to supply a
standard chemo drug (5-fu) on a schedule designed to take advantage of the
drug's maximum circadian effect. He had effected a cure in one patient with this
protocol. After 7 weeks of trying to make it work (and schlepping around the 4 lb.
pump) we gave it up. Our oncologist's office couldn't get enough information to
program the pump properly and, finally, ANY chemo at all proved to be too much
for Ceal's now pretty beat up bone marrow.
She's currently on a break from chemo to build her blood counts back up. We
have several options should we need to start up again later in the summer.
We're monitoring the blood tumor marker carefully to see when we have to start.
It's rising, but very slowly. It's now just above the "normal" range so we've got
some time.
At the suggestion of our GP, we've contacted a doctor in California part of whose
practice is to do research on behalf of patients with difficult cases. It sounds
perfect for Ceal. She's years beyond the cases that our doctors see and no one
is quite sure what to do with her. Our hope is that this guy can locate and put us
in touch with some immunotherapy and low dose chemo protocols that we've not
yet found. In any event, his skill at discovering cutting edge, effective therapies
far surpasses ours. So we have great hope for the telephone consult we've got
scheduled with him in the middle of July.
Ceal's kept up a heavy schedule this year - teaching, acting and directing. Next
year is shaping up to be just as full. Our daughter, Natalie (Nok) is getting
married this Sunday. Ceal just got back from Paris with her sister, Betty. She
has been organizing a new "Malvern Gardeners' Market" where local vegetable
gardeners can sell their overage. In the fall, of course, we'll both be heavily
involved with the election campaign. We hope that you're well and we hope to
write you an even more sedate note next June 4th. Please keep Ceal in your
thoughts.
with love,
Peter (& Ceal)
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Heal Ceal! 23
Malvern 10/30/2008
Dear Friends & Family,
It's been intensely busy here since we went into rehearsal for THE PERSIANS in
late August. We've also been teaching 2 new courses at Temple Univ. this
semester. The show closed today and we're finally able to think a little (around
our duties organizing our precinct for the election next week).
Ceal was found in August to have a recurrence of the pesky tumor that is
adjacent to the large vein that passes through the liver. This time, it turns out, it
has wrapped itself around the vein. It's too long and too weird a shape to do the
usual radiofrequency ablation, so she's scheduled for a new type of procedure.
It's called SIRSpheres (microsphere radiation). Here's a website where you can
learn more about it:
http://sirtex.com/content.cfm?sec=world&MenuID=A040E9B4
Essentially, they will insert a catheter into the femoral artery at the groin and
direct it up to the arteries immediately serving the tumor. They will then inject a
viscous solution containing radioactive plastic microspheres. These will inhibit all
normal blood supply to the tumor so that it gets only a weak supply containing a
heavy (but VERY localized) dose of radiation. It's supposed to work very well
over the course of a few months.
Ceal had an angiogram to assure the docs that her liver blood supply was
contained so that none of the little radioactive dots could get into the lungs,
stomach, etc. She passed that test and is set up for the procedure on
November 6 (2 days after our work at the polls comes to its hoped-for
conclusion). The puncture in the femoral artery for the angiogram blew last
Monday night a few hours after we got home and we ended up rushing to the
hospital twice last week (missing one performance in the process) with severe
hematoma. That seems to be resolving now and we have hope for a better
outcome the next time they go into her artery.
Please think of Ceal on Thursday for the procedure. It will be a few months
before they have conclusive evidence of success, but they have very high
expectations. We'll try to keep you posted.
with love,
Peter (& Ceal)
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Heal Ceal! 23a
Malvern, November 20, 2008
Dear Friends & Family,
A lot of folks have been asking how Ceal's doing after the procedure on 11/6, so
I'm writing sooner than I'd intended. She's doing very well. The recovery from
the 11/6 catheterization procedure was much quicker and easier than from the
tests in October. She was very careful. She's now finishing her second week of
rehearsal for a very physically active children's show at a theatre downtown.
We were told that the radiation might take as much as a month to begin showing
positive effect. The serum tumor marker measured in blood tests was supposed
to rise for a while, then begin to fall. It did rise, briefly. Then for the last two
weeks it has fallen quite substantially. So it's clear that the radiation is working,
and much earlier than anticipated.
We had to fit Ceal had on Thanksgiving Day (her only day off) for the fangs she'll
wear in the show (she plays Mrs. Spider in "James and the Giant Peach"). We
thought of sending this photo to her doctors to ask if this condition was one of the
common side effects of Yttrium-90 radiation, but then decided that might be
pushing it.
http://ccil.org/~pjdel/CealFangsgiving.JPG
Happy Fangsgiving, with love,
Peter (& Ceal)
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Heal Ceal! 24
Malvern, April 19, 2009
(NB: A similar message with greater introductory detail went out to some people
who were added to the list because we are going out of the country and will not
be in touch as often in person.)
Dear Friends and Family,
There are some exciting things happening soon in Ceal's healing. I last wrote to
you in December about the SIRT procedure (they injected a radioactive solution
right next to the tumor to choke its blood supply and irradiate it). That procedure
effectively reduced the tumor to a size and shape that allows the doctors to kill
the rest of it with a needle ablation. So, on April 23 Ceal will have another
ablation. Please think of her on that day.
Here's the exciting part of all this. We've been in contact for over half a year with
a brilliant doctor in Israel. Dr. Shimon Slavin is working in immunotherapy helping the body's immune system to kill the disease itself. This work is
considered "experimental" in the USA because Big PHARMA and the FDA have
kept it on the fringes as it doesn't involve lucrative, patentable medications. But
in Israel and several other countries, it is accepted medicine and it is healing
people. This doctor is the first person who has seriously spoken the word "cure"
for Ceal since we started this work seven years ago. We are finalizing dates with
him at the moment, but we expect to be in Tel Aviv for the last two weeks of July
and the first week of August. We're still figuring out what it will all cost. And
we're quite sure that our insurance will cover almost none of it. But it is
something that we really need to do.
Over the years we've often heard surprise from friends that we're still at this. "I
thought she was cancer-free." That has never been the case. At the best of
times we ride for 2-3 months waiting for the other shoe to fall at the next scan or
blood test. Most of the time we're working month-to-month or, more often, weekto-week waiting for the latest test results to see where we go from here. We're
beginning to feel that we're approaching the end of our ability to control the
disease in the way we have for the last several years. This therapy in Israel
offers the possibility - for the first time - to wonder if Ceal can be cured. If all
goes well, she will arrive in Tel Aviv with little or no measurable disease. Dr.
Slavin says his treatment is particularly thorough and effective at finding and
killing the remnants if there is very little residual disease.
Because we'll be out of the country for a while for intensive treatment, we'll
probably set up a more streamlined way of communicating. Our friend, Jan
Lucas Grimm in Indiana, set up a sort of healing blog on a site called
"CaringBridge.com." We'll probably do that soon so that people can check in for
the latest posts and offer their comments on the Guest Book page.
Here are a few links in case you'd like more information:
An article on Dr. Shimon Slavin in Tel Aviv:
http://thefutureofthings.com/articles/1012/smart-bombing-cancer.html
All the past Heal Ceal! messages:
http://ccil.org/~pjdel/HealCeal!New.doc
Peter (& Ceal)
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Heal Ceal Website #1
Malvern, May 11, 2009
Dear Friends & Family,
As promised in my last email, we've set up this website to make it easier to keep
in touch as we proceed through this summer which will involve an actual as well
as a symbolic healing journey.
On 15 July we'll be in Tel Aviv, Israel to begin treatment with Dr. Shimon Slavin
at his International Center for Cell Therapy & Cancer Immunotherapy, which is
part of the Weizman Center of the Tel Aviv Medical Complex.
On our way to Tel Aviv, we'll stop in Cyprus for 5 days. We have dear friends
there from our three working trips to the island and felt we must take this
opportunity to see them (we'll be only about 100 miles away).
Treatment Update: The radiofrequency ablation that Dr. Laurence Needleman
performed on Ceal in late April seems to have been very successful. She will
probably arrive in Tel Aviv with "minimal if any imaging evidence of disease."
When he was informed by Ira Cantor (our friend and GP) of this result, Dr. Slavin
replied that the "chances of very good response - potentially cure - are good, but
there is no guarantee." As always during these 7 years, we live in hope.
We have all our airline reservations. We're very thankful that our daughter Natalie
and her husband Zig arranged the major flights through their frequent flyer miles,
so our transportation costs are small. Through Craigslist we found a studio
apartment in Tel Aviv about 10 minutes' walk from the hospital. When the couple
who own it learned we were coming for treatment, they decided to let us have the
place for a great deal less than they could charge at this high tourist season.
Discounting the savings on air fare and housing - and depending on how many
cycles of treatment Dr. Slavin needs to do - the trip and the treatment will run
between $25,000 and $30,000. Since this trip became a real possibility in the fall
we've saved over $15,000, which we will use for this treatment. We've been
discussing options for covering the rest with friends from our Quaker Meeting.
They reminded us that many people are interested in helping and kindly urged us
to get over ourselves and accept help when people want to offer it.
We could figure out how to pay for this ourselves. Because of the uncertain
nature of our profession we've always tried to live deep within our means. As a
consequence, we've managed to put by some long-term savings for retirement.
We could sell some of those savings to pay for this treatment. We own our house
and can borrow against it. But our friends at Willistown Meeting have encouraged
us to accept the offered help. They have also made it possible for friends and
family - if they choose - to take a tax deduction by making a contribution
through our Meeting's "Caring Fund." They make their case below.
One of these friends made an application to Philadelphia Yearly Meeting's
Emergency Fund to help with expenses. She received $1,200 on Ceal's behalf the maximum grant PYM can make. Arthur M. Larrabee, the General Secretary
of PYM, wrote: "May God's healing energy, which surrounds and infuses you,
accompany you on this journey... We are glad to provide this kind of help to our
members, knowing that those who find themselves in need now likely have
offered and will offer help to others as they are able."
Here is a message from Ellen Simmons and Claudie Brock of Willistown Friends
Meeting:
Dear Friends of Ceal,
Ceal has been a beloved member of Willistown Friends Meeting for many years.
We see how she uses her intelligence, her truthfulness and her skills to work for
peace and social justice locally, nationally and internationally. She is respected
for her quiet, kind activism.
When Ceal was first operated on and discovered to have colon cancer in 2002,
some of us gathered at the hospital to "hold her in the Light," our Quaker term.
(Interesting that Ceal and Peter work for the People's Light and Theatre Co.)
All of you who receive the Heal Ceal letters know that Ceal is a courageous and
amazing person. With Peter's tremendous love and tireless research and Ceal's
incredible stamina, focus and pure bravery, Ceal has kept the cancer at bay.
Now there is the chance that she can be cured.
As Peter says, the treatment is expensive and Ceal and Peter welcome your
help.
You may make a tax-deductible gift to support Ceal's healing journey by
sending a check made out to "Willistown Friends Meeting." In the memo line
write "Caring Fund" and send to:
Ron Ploeg
Willistown Friends Meeting Treasurer
23 Marlborough Road
Newtown Square, PA 19073
(you will receive an acknowledgement)
In friendship,
Ellen Simmons, Clerk
Claudie Brock, Clerk of Care and Counsel
Willistown Friends Meeting
Please Note: For some of us a tax deduction is not useful. If you don't itemize
deductions and you still would like to help, please send checks directly to Ceal:
Ceal Phelan
113 W Broad Street
Malvern, PA 19355-2509
The CaringBridge site is up and running. There is a link above. We'll be using
this site in lieu of emails to keep you up to date. At this site, we will be posting
Journal Entries through the summer, particularly as we get to Israel and begin
treatment. You'll also be able to sign and leave messages to be read on the
"Guestbook" page. (You'll have to enter an email address and password to do so,
but we've never had any spam from them.) I'll post pictures. You'll be able visit
the site as often as you like.
Our son, Jake, is in the middle of Navy boot camp. Peter is teaching a summer
course at Temple. Ceal is currently rehearsing Doubt: A Parable at People's Light
& Theatre - our artistic home. It previews June 3rd and runs through June 28th
(just less than a week before we travel to the middle east). If you're in the area,
please come.
http://www.peopleslight.org/season/show.php?id=6
With love,
Peter & Ceal
CEAL ADDS A NOTE:
After hearing concerns from some of you who have read this website, we think
that we may have created the false impression that we are in dire financial
straits. We're not. Please be assured that the cutbacks we mentioned are part of
our effort to live more "greenly," which carries a side benefit of enabling us to live
more cheaply. This has helped us save money toward our Israel trip. We are
comfortable reducing our carbon footprint and we still live comfortably.
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Heal Ceal! 25
Malvern June 5, 2009
Dear Friends and Family,
June 4th passed almost without notice. It was the 7th anniversary of Ceal's
surgery for and diagnosis of Stage IV Metastatic Colon Cancer. She is now in a
tiny percentage of patients who make it this long. We'd like to keep her there.
Ceal spent the day rehearsing and performing in the final preview of Doubt: A
Parable. She plays Sister Aloysius. I've now seen two dress rehearsals and she
is quite extraordinary in the role. It opens tonight.
Plans for the trip and treatment in Israel go on apace. Our profound thanks to
those who have contributed already to that effort. A great deal has come in and
we are very grateful. Particularly so because I made the mistake of basing my
estimates of costs for the treatment on conversations and emails with the Doctor
rather than the administration of the Medical Center in Tel Aviv. Though the
treatment will cost considerably more than we originally understood, we are well
on our way there thanks to the efforts of our friends at Willistown Friends
Meeting, a friend from the acting company at Peoples Light & Theatre and the
generosity of many others.
Ceal goes for scans on Monday to determine how effective the burning
procedure in April was. If she has no measurable disease, it bodes very well for
the long-term success of the treatment in Tel Aviv.
I've posted more information on the website so that I can keep this anniversary
email short.
Go to www.healceal.org.
We both hope you're well.
With love,
Peter (& Ceal)
PS: So many have had issues with our old email addresses, that after over 12
years at CCIL, we've finally changed to gmail:
pjdel51@gmail.com
cphelan22@gmail.com
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Heal Ceal Website #2
Malvern
June 8, 2009
Friends and family have expressed confusion over Ceal's condition.
Is she still sick? She looks great. Is she in danger?
Should she be doing this strenuous work onstage when she's ill?
Why this treatment in Israel? When will you know if she's cured?
To clarify as well as we can:
-Ceal is 7 years out with what is considered a terminal condition.
-For most of the time since 2003 Ceal has felt very well. There have been
treatment related problems, but there has been no physical effect of the disease.
Her life is in the theatre and she has been overjoyed to be able to continuing
working.
-It's also worth noting that a professional stage actor has to work 20 weeks a
year under union contract to qualify for health insurance coverage. So Ceal has
to keep working as much as she wants to keep working.
-Because she responded well initially to major chemotherapy, because she's
been doing a battery of alternative treatments throughout her healing process
and because we've worked with our doctors to stay at or ahead of the cutting
edge of standard medical treatment - we've managed, so far, to render her
cancer, effectively, a chronic rather than a terminal condition.
-For 6 years we've kept the disease at a very low level and located only in the
liver.
-We've done this mostly by ablations (killing tumors by running a needle through
the skin of the abdomen, into the liver and into the tumor - then burning, freezing
or injecting with alcohol).
-There have been major recurrences which required chemotherapy as a followup to the ablation. Chemo went on for 6 months in one case and then was
followed up by a year of low-dose chemo.
-Ceal responds fairly well to chemotherapy, but it also destroys her bone marrow.
It is very difficult for her to keep producing enough red and white blood cells
when she is on chemo, so we are very reluctant to depend on that therapy.
-The cancer will always return and we will always have to find some way to heal
from it. Chemo is increasingly difficult for Ceal to handle. So we've had to find
other ways to cope.
-The doctors are amazed that the disease has remained confined to her liver all
this time. There are almost certainly microscopic collections of cancer cells
elsewhere in her body and, given time, they will grow into measurable, active
tumors.
-Dr. Slavin's therapy in Israel will be targeted specifically to Ceal's cancer cells
and will find and kill them wherever they are - no matter how small the collection.
It is his intention to kill all of them.
-This therapy is only truly effective when done at a stage of minimal residual
disease. So, while it is expensive and inconvenient to travel there for it, it only
makes sense to do so now - when Ceal seems to be in excellent health.
-The only way to track the success of this therapy is by the same periodic blood
tests and scans that we've been doing for 7 years. They may be clear for 3
months or 6 months and then, as in the past, begin to show small recurrence. Or,
they may be clear for a year - or 2 - or always. We'll just have to keep checking.
-Nothing else, besides this treatment, promises anything nearly so hopeful.
Plans for the trip and treatment in Israel go on apace. Our profound thanks to
those who have contributed already to that effort. A great deal has come in and
we are very grateful.
We're particularly grateful because I made the mistake of basing my estimates of
costs for the treatment on conversations and emails with the Doctor rather than
the administration of the Medical Center in Tel Aviv. I wishfully or willfully
misunderstood the total amount for treatment as $24,000USD and have been set
straight by someone in accounting that we should expect to pay $60,000USD.
We are well on our way there thanks to the efforts of our friends at Willistown
Friends Meeting, a friend from the acting company at Peoples Light & Theatre
and the generosity of many others.
I had a couple of telling conversations this week with a very nice lady at CIGNA,
our health insurance provider. While she clearly understood that we were 6 years
past anybody's expectation because we seek out the next thing in treatment and
did her best to sell the new treatment to her Medical Director, she was not able to
make a dent in the bureaucracy. CIGNA would much prefer to pay $120,000 for a
year's worth of chemotherapy that carries a huge array of side-effects and has
been shown to be almost completely ineffective rather than pay a percentage of
half that cost for something potentially curative. Go figure.
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CaringBridge Journal #1
Thursday, June 18, 2009
Things are moving quickly. Ceal had her final scans before the trip and all looks
very good. The PET and MRI scans show no new growth and show that the
burning procedure in April was a success. There is NO IMAGING EVIDENCE
OF DISEASE. The blood tests showed that the CEA level (the tumor marker in
the blood) was at the high end of the normal range. We checked with Prof.
Slavin in Israel (and with our doctors here). All concur that Ceal is in the state of
"minimal residual disease" that will produce the best possible effect of the
transplant treatment she will be given in Tel Aviv. We thought she might need a
couple weeks of chemo here before we left to keep her that way, but none of the
doctors feel that it is indicated. So we're set to go medically. Now we're finishing
up practical matters.
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CaringBridge Journal #2
Saturday, July 11, 2009
We're back in Cyprus! It's amazing how quickly we fall back into the rhythm of
Droushia Village.
The travels were long, but uneventful to date. Those to come promise to be more
eventful. More on that later.
Ceal's CEA - the blood tumor marker - rose to just above normal in the last
month. No one seems concerned, but it is clear that we're doing the right thing at
just the right time in coming to Israel for this treatment.
Cyprus is such a healing place. We came here to see friends that we haven't
seen in years and needed to see if we were this close. But we also came here to
begin the process of healing. We're getting our feet on the ground in the Middle
East in a place we know and love and where the foreign language and alphabet
are ones that we sort of know. We're in the same time zone and climate as we'll
be in Israel and we're getting used to them again in a place that is very familiar.
Thanks to our friends Danny Fruchter and Nicos Shiafkalis, we've spent more
time here than anywhere else outside of the USA.
We're walking the dirt roads of Laona for an hour every morning. Laona is the
area where we're staying in the north west corner of the island - just south of
Polis. We drive our little rented Hyundai 15 minutes down to the beach early
each afternoon. We have dinner with our friends, Michael and Stephanie Wood
each evening - on their balcony garden, at one of the tavernas in town or at a
kiosk down on the beach.
On Monday we'll drive to the airport at Larnaca hoping to get on a flight to Tel
Aviv. We made reservations months ago through a travel agency in Barcelona
because they were the only source I could find for Arkia Israeli Airlines. They've
cancelled our flight and rescheduled and they don't seem to talk to each other
and no one seems to know for sure if we're booked. Arkia is closed for Shabbat
today and the agent is closed tomorrow when Arkia might be able to confirm. So
we live in hope. If we're not on the arranged flight, we'll probably be able to jump
on a Cyprus Air flight at the last minute.
We'll post again from Tel Aviv (assuming we get there).
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CaringBridge Journal #3
Wednesday, July 15, 2009
Hello all!
Just a quick note as we get our thoughts in order. We're in our lovely little flat in
Tel Aviv. All the groceries and all their ingredients are in Hebrew. There's usually
someone close by who can help us identify what we're looking for.
We saw the doctors for nearly 2 hours today. They've started Ceal on a low-dose
drug regimen in preparation for more substantial biological treatments after they
digest the great deal of additional info we supplied them today. We hope to see
them again before the weekend (tomorrow - Thursday night) but may not be able
to before Sunday when the work-week starts up again.
The clinic is a very impressive operation and these doctors and their staff are
extraordinary.
More later.
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CaringBridge Journal #4
Friday, July 17, 2009
We've got a lot to catch up on and it's the beginning of Shabbat, so we've finally
got a little time to catch up. I'll do this in a few installments.
First Cyprus and our getting here:
We lived with Michael and Stephanie Wood for a month the last time we worked
in Cyprus (2000). We became and have grown over the interim much closer to
them than the short time we actually spent together would seem to allow. They
are wonderful people who live in Droushia Village in the Paphos region in the
west of Cyprus (about 12 kilometers south of Polis). Their beautiful home houses
the "Levant Study Center." Their guest houses and beautiful patio gardens (not
to mention the warmth of their support) are available to workers and seekers of
faith who have come to a place in their lives where they need to stop and recreate themselves in an atmosphere of tranquility, support and inspiration. They
chose Cyprus so as to be near the Holy Land in a situation uncharged with the
politics of the Israeli-Palistinian conflict (which they have set up conferences to
help address through work with Arab and Israeli Christians). As I've said before, it
was the perfect place for us to begin this journey of healing. The picture above is
the view from our terrace down to Chrysocholous Bay where we went to swim
every day on the cleanest beaches in Cyprus. I could go on for some time about
the wonders of this island, this village and these people, but I'll just encourage
you to come and experience them for yourselves.
We had great worries about getting from Cyprus to Tel Aviv as we had not been
able to get any form of confirmation of our reservation. When we got the the
airport at Laranca, it seemed the easiest flight we'd ever taken. There was no
need for confirmation to them. They had us and they were going to take good
care of us. And they did. It was a great (short) flight on a small prop plane. The
arrival in TLV was completely uneventful. We were waved through customs and
got our quick, cheap train and cab to our flat in Tel Aviv quickly and without any
problem.
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Heal Ceal! 26
Tel Aviv, Saturday 18 July, 2009
Hopefully?
Dear Family and Friends,
It's our first Shabbat in Israel and we're beginning to relax along with the rest of
the city. Our time in Cyprus with our friends Stephanie and Michael Wood was
wonderfully healing and restful and brought us to an excellent place to begin this
part of the journey. More on that on the websites.
We've met with the doctors and their staff a few times and have a very specific
schedule and course of treatment arranged. We've detailed that on the
CaringBridge site as well. I'll give links below to the sites as some friends have
found it difficult to get directly to the HealCeal site.
I think, in an effort to keep these emails short and keep the detailed information
on the websites, I only want to say a few things here:
We are astonished at the outpouring of support that this project has received. We
thank you for your part in making this trip and treatment a reality. In one of my
first emails on Ceal's behalf - four days after her initial surgery in June of 2002, I
wrote:
"If prayer is not easy to you, do what Ceal sometimes does for others when no
words come: send a healing energy her way in the form of a positive vision of
her. Ceal loves her work, she loves to garden, she loves her family, she loves to
take long fast walks. Picture her confidently doing those things. A few weeks
ago we ordered her a lovely new Land's End "Tankini" swim suit (turquoise- if
you want to check it out in the catalog or on the web site). Ceal loves to splash
and float in gentle surf. When I'm at a loss for what to say next, I see her in that
suit floating in the Mediterranean and send that vision her way. Help me, please,
get here there for real."
On the CaringBridge site is a picture of Ceal in that same turquoise swim suit in
the Mediterranean. Thanks.
I've always hated the incursion into English of the expression: "hopefully." I now
find NPR news anchors and even my censorious self splitting infinitives and
saying "hopefully" on unfortunate occasions when I really mean "it is to be
hoped." I spoke at our Friends Meeting shortly before we left the US about hope
and humility - how one must be careful of expressing one's hopes too openly.
The Greeks say: "Don't boast while the gods are listening." However, on our first
evening in Tel Aviv our eyes were caught by a bit of English graffiti scrawled on a
wall while we were out on our walk - about the only English to be found in the sea
of Hebrew characters which we are only beginning to be able to distinguish. It
said: "Hope Fully." Pretty good advice. That's where we are on our first Shabbat
in Israel with our detailed course of treatment in front of us.
The moon changes to its fortunate waxing phase on 22 July - Ceal's 60th
birthday.
Please get details on travels and treatments at:
http://www.healceal.org (or, if you've had trouble with the redirection:)
http://ccil.org/~pjdel/HealCeal/
Here's the direct link to the CaringBridge site:
http://www.caringbridge.org/visit/healceal
Thanks for being with us on this journey.
love, Peter (& Ceal)
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CaringBridge Journal #5
Saturday, July 18, 2009 8:17 AM, IDT
Next: Tel Aviv
Our flat here is on a quiet, shaded little street called Bilu a block from major
thoroughfares. We're on the 1st floor (US 2nd floor) - a 15 minute walk from the
Medical Center and a 20 minute walk from the sea. For those of you who know
Tel Aviv (or want to map it online) we're at 43 Bilu between Marmorek and
Toscanini (just south of Disengoff) and just west of Ibn Givriol.
Danny and Hannah Levy are renting us the master bedroom of their flat, which
has microwave, hot plate, refrigerator (enabling us to self-cater) and private bath.
They take great care of us - inviting us in for movies in the evening, etc. We
found them through Craigslist Tel Aviv. When they learned of the purpose of our
visit they offered to rent us the place at well below what they could be getting at
this high tourist season.
We're slowly learning the aleph-beth and beginning to sound out street signs and
the labels of groceries. Very little is written in English, but there's usually
someone close by who can help us and interpret for the clerk if necessary. As I
said in an email recently, the one prominent piece of English we've seen was a
bit of graffitti encouraging us to "Hope Fully!" We've enjoyed finding bargain
goods at the nearest outdoor market - off Allenby Street about 15 minutes from
our flat.
The beaches stretch nearly the entire western end of the city. They are clean and
beautiful and filled with beautiful people. The surf is pretty high many days which
encourages the surfers and discourages the likes of us. We try to get in each
morning and have succeeded 3 days.
It's hot, but not nearly as hot as we had expected - 83-90 degrees the high. The
sun is intense but there are lots of tree lined streets, overhangs and awnings.
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CaringBridge Journal #6
Saturday, July 18, 2009
The International Center for Cell Therapy and Cancer Immunotherapy, Ltd.
We've been in touch with Dr. Shimon Slavin for nearly a year. He has spent 30
years at the cutting edge of cancer immunotherapy. Many people have noted that
Israeli doctors have greater freedom to engage in research because they are not
bound so much as their American colleagues by the need to get big
pharmaceutical companies to pony up the huge costs of research and trials.
They are also given much greater freedom in their ability to put their research
into clinical application. Our friends the Woods from Cyprus lived in Israel for
several years. They point out that Israeli doctors are also simply more
independent and inclined to charge forward with a good idea when they see a
chance to improve the situation and generally feel less bound by the system in
which they operate.
The Center is in Top Ichilov in the Weizman Center - the Tel Aviv Medical
Center. Dr. Slavin's office is on the 20th floor of one of the main buildings in the
center and is seriously impressive. We met with Dr. Slavin and his associate, Dr.
Beni Gesundheit, for well over an hour on Wednesday. They took a very
thorough history and did an exam. They determined that we had been doing a lot
of the right things for a long time and had achieved: "some impressive results..."
but that she was at a "high risk for relapse." They felt that we had come at an
excellent time for their treatments. They needed a good deal of additional
information - some from tests and most from my laptop back at the flat. I think
they appreciated our concern that we might have to wait until after the weekend
to get started on Sunday, so they called us back in on Thursday. Ceal was set up
with a very detailed and complete plan of treatment.
First a little background on the biological treatment of cancer (to illustrate a point,
"The Professor," as Dr. Slavin is affectionately called by his devoted and
extraordinary staff, jumps up, grabs a marker and begins drawing on his window
- covering the northern skyline of Tel Aviv with diagrams): All cells are
programmed to divide and, eventually, to commit programmed suicide - called
"apotosis." (Otherwise your skin, for example, would grow several inches thick.)
Cancer cells are genetic mutations that missed the 2nd half of the programming.
Our bodies' immune systems probably recognize many such mutations daily and
kill them off as aliens. Every now and then, something happens to let one get by then cancer starts. Immunotherapy endeavors to train the immune system to
recognize the cancer as an enemy, to discourage cancer cell division and to
encourage cancer cell apotosis. So, Ceal's treatment:
1) She's already started on a "metronomic" or metered protocol of drugs (similar
to one she's been on for years but with adjustments) to urge the immune system
toward the ends just stated.
2) She's scheduled for a transplant of "activated alogenic killer cells." A donor
(myself, as it happens) will give blood from which the most active anti-cancer
cells - T Cells and N-K (natural killer) Cells will be separated out. These will be
tagged in the lab with a chemical that attracts and then binds them directly to
Ceal's particular type of cancer cells. The big problem over the years with
transplants of any kind is the host's immune system going to war with the
transplanted material creating a "graft vs. host disease." The Professor's work for
years has been specifically to deal with that problem. This therapy recognizes
that it will happen and deliberately mis-matches the transplanted cells to the
patient. Ceal's immune system will quickly kill off the transplant so there will be
no lingering GVHD. However, the super-charged, transplanted killer cells will do
their work - finding, binding and killing her cancer cells wherever they are and in
however small collections before they meet their own end.
So: on Tuesday, 21 July, I'll donate blood which will be processed and treated
with the targeting agent in the lab for several days. On Sunday, 26 July, Ceal will
be transfused with the treated cells. She will be given an injection of
Recombinant Interlukin 2 (RiL2) that day and for the 4 days thereafter to
maximize the destructive effect of the killer cells. That will be a good time (26-30
July) to keep Ceal in your thoughts as the therapy is at its most effective and as
the 2 treatments will combine to give her fever and malaise.
3) After the cell therapy and before we come home, Ceal will be given her first
vaccine therapy. This one will be made in the Center's lab from a biopsy of her
own cancer which we sent on dry ice in April. It will be mixed with and activated
by a chicken virus - benign to humans - which will teach her immune system to
recognize her cancer as an enemy.
We will then be sent home with a 6-month supply of another vaccine. This one
will be a soup of other patients' colon cancers. Her immune system will recognize
each of them as alien and attack them all. They will be genetically selected to
match her DNA so that one gene of each alien cancer will match one of hers. In
that way her immune system will be taught to attack their sum which is
genetically her own cancer.
As we were leaving Prof. Slavin's office he asked if we were going to the concert
in the park. People in his office gave us careful particulars on trains and paths.
So Thursday night we went (along with much of Tel Aviv and about half the rest
of the country) to a huge park along the river to hear Daniel Barenboim conduct
the Israeli Philharmonic and the 200+ chorus and soloists from LaScala in Verdi's
Requiem. We could barely get to a place where we could see the shell and finally
gave up - with teen-age dates crowding in front to get a better view. What we
could hear of the concert was magnificent. We watched post-concert fireworks
from the train station platform.
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